“We are all the experts in our own lives.”

This simple statement feels intuitive and self-evident. Who understands my needs and wants better than I do myself? Not some government body, that’s for sure.

But when it’s extended to the rights of people with disability, this simple statement can have big implications.

The concept that people with disability are the experts in their own lives just like everyone else isn’t new. It was included in UN’s Convention on the Rights of Persons with Disabilities, which Australia signed in 2008.

Unfortunately, it’s a concept that’s not always translated into reality.

Hundreds of younger Victorians with disability are living in aged care homes. People like Molly, who was told that because of her complex disability needs her only housing option was a nursing home. She was 18.

People with disability are regularly denied other things most of us take for granted

People with disability are regularly denied other things most of us take for granted, like decent employment, access to public spaces and the right to parent.

Change might be on the horizon, with the release of a new State Disability Plan for Victoria. The goal is to improve the way people with disabilities are empowered to make choices about their own lives.

There’s a lot to like about the new Victorian Government plan. For instance, it:

• RECOGNISES the human rights model of disability. For someone with complex disabilities, being able to run their own life the way they want might require supports to participate in the community, as well as the removal of physical, social and cultural barriers. The human rights model emphasises the need to provide this support.
• EMBEDS co-design as an important principle, so that people with disability – including Aboriginal people, women, LGBTIQ+ people, multicultural people, older people, and young people – can be the voice of their own lived experience and needs.
• ACKNOWLEDGES the importance of making new buildings and infrastructure accessible, including public places like parks as well as new homes. (As the late, great Stella Young said: “My disability exists not because I use a wheelchair, but because the broader environment isn’t accessible.”)
• SUPPORTS the importance of so-called “disability-confident and inclusive workforces”, and of improving community attitudes to disability.
• FOCUSES on family and sexual violence, and on what needs to change to keep both adults and children with disability safe. This includes reforming and strengthening the family violence and sexual assault sectors and building a stronger workforce.
• UNDERSTANDS that children and families need to be connected with the right supports at the right time – long before a situation reaches crisis point. Pleasingly, the plan proposes “whole of family” support to improve the health, safety and development of both kids and parents with a disability.

But the plan isn’t perfect.

There are some parts that need greater detail and depth (for example, in the employment) or rigour (in relation to tools to support reporting).

The plan is also hazy on implementation. While it identifies the parts of government that are responsible for discrete actions, the description of the Office for Disability’s oversight role is light-on.

The plan also doesn’t commit to the establishment of an Interdepartmental Committee (or any other piece of reform architecture) to drive whole-of-government action.

It is also silent on implementation funding. (Not an insignificant matter.) So while the Plan is big and ambitious, it will only create real, effective positive change if it’s backed by funded rolling action plans with clear indicators, targets and measures for success.

Read our full State Disability Plan Briefing Document, for people with disabilities, their families and the organisations that support them.

• Support for Victoria’s LGBTIQ+ community
  $45.4m in 2021-22 to celebrate and support the LGBTIQ+ community, including $21.3m for mental health and wellbeing services for trans and gender diverse young people, $2.4m for Victoria’s Healthy Equal Youth project, $8.8m for wellbeing services and $9m to support community organisations and peak bodies to help LGBTIQ+ Victorians navigate vital services.

• Increased funding for disability advocacy support
  Funding for the Office for Disability has been increased by 16.7% to $15.6m for 2021-22, which will support the development of the State Disability Plan and deliver a $1.7m boost to disability advocacy services.

• Support to build inclusive and safe communities for Victorians with disability
  As part of a $9.2m package over 4 years, funding is provided for communications, preparedness and response to emergencies and disasters and Disability Liaison Officers in health services. $9.1m in 2021-22 ($29.3m/4 yrs) is also provided to support Working with Children Check and National Disability Insurance Scheme worker screening. 

• Building better connected communities
  $1.8m in 2021-22 ($3m/4 yrs) funding is provided to continue the Australian Red Cross hotline to support people feeling disconnected or lonely to engage with their local communities, to deliver a reimagined Seniors Festival, and to continue the Justice Connect not-for-profit law program.

• Public transport infrastructure, accessibility and amenity upgrades
  In addition to an investment of $986m in 2021-22 to build a fleet of 25 more accessible, reliable and energy efficient trains and related infrastructure, and $368m in 2021-22 to deliver enabling infrastructure for Next Generation Trams, the Budget commits $7.3m in 2021-22 ($9.9m/2 yrs) to improve public transport accessibility through a new strategy and a range of design and access improvements, including level-access upgrades to seven tram stop pairs aligned to the Metro Tunnel network. 

Analysis

The Budget commits funding to a range of initiatives focused on improving access, inclusion and support for Victorians who experience additional barriers, discrimination and disadvantage. COVID-19 exacerbated the issues and challenges faced by many Victorians, including people from culturally and linguistically diverse backgrounds, older people, people with disability, the LGBTIQ+ community, carers and support networks.

Lessons learnt through the pandemic – including the importance of partnering with and working alongside communities – have informed the delivery of further funding for continued and enhanced community engagement activities with residents of the North Melbourne and Flemington public housing towers, an expansion of the prevention and preparedness work of the Culturally and Linguistically Diverse (CALD) Communities Taskforce, and accessible emergency communications and preparedness support for people with disability.

Support for culturally and linguistically diverse Victorians

Multicultural communities were disproportionately impacted by the COVID-19 pandemic, the associated economic downturn and increased racism. Continued and new funding in the Budget to support multicultural Victorians is welcomed.

Welcoming $23.7 million in #VicBudget for new initiatives for multicultural communities, including support for seniors, young people and migrants and refugees.
Read our budget response https://t.co/bVrJyJqFQw#springst pic.twitter.com/9XQ0sUHYlk

— ECCV (@ethnicvic) May 20, 2021

The Budget includes a focus on newly-arrived people, with $8.7 million over four years to improve settlement outcomes for migrants, refugees and asylum seekers. Through the funding, the capacity of programs delivering legal support, case management, and information on employment protections will be extended. The funding will also increase the capacity of Regional Community Hubs to improve services for new migrants, refugees and asylum seekers across Victoria. $3.8 million in 2021-22 is provided for continued health supports for people seeking asylum who are ineligible for Medicare and income support, including nurse and GP care, mental health programs, assistance with food, medication and utilities, homelessness programs and case coordination.

Funding is provided to support multicultural communities to build employment skills and improve access to services. Targeted economic security programs to support migrant and refugee women into employment and the Asylum Seeker VET program, providing eligible asylum seekers with access to subsidised training, are both funded. The Budget also commits $4.1 million over two years for jobs and stimulus initiatives for Victoria’s multicultural communities. The package supports the development of a cross-government bicultural worker strategy, focused on recruiting and supporting bicultural workers to assist diverse communities to navigate government services.

Racism is not new, but it is entrenched and persistent. A three-year funding package to tackle racism in Victoria is welcomed. The $1.5 million package will support the implementation of communication, community engagement and training initiatives to reduce vilification and hate-based conduct. These initiatives are part of the Government’s response to the Parliamentary Inquiry into Anti-Vilification Protections. Multicultural festivals, events and seniors’ groups will also have access to funding to celebrate and promote diversity, foster social cohesion and support community connections.

Advancing the rights, safety and wellbeing of older Victorians

The Budget makes a range of commitments to improve the quality of life, safety and wellbeing of older Victorians. The recently released recommendations of the Royal Commission into Aged Care provide policy and program directions for all jurisdictions to better support older people living in residential care. The Budget provides an additional $28.8 million in 2021-22 to meet nurse-to-patient ratios in public sector residential aged care, and a further $1 million in 2021-22 to continue the work of Elder Abuse Prevention Networks and strengthen elder abuse identification and response in public health services.

Funding of $65 million over four years is allocated to rebuild the Glenview Community Care aged care facility in Rutherglen and to undertake detailed planning and design work for the future redevelopment of the Camperdown and Cohuna public sector aged care facilities. Close to $76 million will support ongoing infrastructure works for public sector residential aged care services in Cheltenham, Kew and Wantirna, and regional and rural facilities renewal.

The isolating impacts of the pandemic are unfortunately far from over for those who cannot risk returning to face-to-face social and community activities, particularly older Victorians and people with health conditions. We welcome continued funding for a hotline operated by the Australian Red Cross to provide emotional support and to help people connect and engage with their local community. Continued funding in 2021-22 of $2.5 million for the Victoria Together online platform, which shares a range of creative content and virtual experiences, and $400,000 for a reimagined Seniors Festival to provide outreach to isolated older people in aged care facilities through online, video and radio-based entertainment, will also support people to access and enjoy social interactions, arts and cultural experiences.

Promoting and realising the rights of people with disability

While the Victorian Government’s role as a disability support provider and funder has changed substantially through the roll-out of the National Disability Insurance Scheme (NDIS), the state’s vital and ongoing responsibility for delivering inclusive and responsive mainstream services and civic spaces, and in eliminating systemic disadvantage and inequity, remains unchanged. This includes, but is not limited to, child and family services, housing, health, education and training, employment, emergency management and response, justice, and transport.

The Budget includes funding for targeted initiatives, including $1.4 million for accessible communications before, during and after emergencies and disasters, $6.1 million for Disability Liaison Officers in health settings to improve access to services, continued funding for the Impact21 Program to support employment pathways for people with an intellectual disability, and $3.9 million over four years for a team to support young people with disability who have matters before the Children’s Court. A range of measures to support inclusion in education also received funding, as detailed in our Education analysis.

Funding for quality and safeguarding measures is provided in the Budget, including additional funding for regulators and complaints handling bodies like the Victorian Disability Worker Regulation Scheme and the Disability Services Commissioner, for workforce screening, and for advocacy services to promote the rights and voices of people with disability.

Disability advocacy has been consistently recognised by inquiries as an important safeguard to help prevent and report abuse, particularly for people who are afraid or unable to have their voices heard. The disability advocacy sector is struggling with the weight of demand associated with the NDIS, and COVID-19 has put additional pressure on services. While more is needed to reduce waiting lists and improve the sustainability of the sector, this Budget boost is nonetheless welcome. We look forward to additional detail about how funding will be directed to increase the coverage, reach and access to disability advocacy and self-advocacy support.

Supporting and celebrating Victoria’s LGBTIQ+ community

The Budget makes a range of commitments to deliver improved support for Victoria’s LGBTIQ+ community. $8.8 million is provided for mental health supports, including $6.4 million to expand the Rainbow Door program to support people who identify as LGBTIQ+ to access and navigate the mental health and wellbeing system, and $2.4 million to continue the Healthy Equal Youth project to support young LGBTIQ+ Victorians. A further $4.6 million is provided for the development of a diverse communities’ mental health and wellbeing framework and blueprint for action.

The Budget includes $21.3 million to support the mental health of trans and gender diverse young people through the Royal Children’s Hospital and Monash Health’s Gender Clinics. An additional $9 million is provided to support community organisations and peak bodies to help LGBTIQ+ Victorians navigate vital services. Specialist legal services for the LGBTIQ+ community are also funded as part of a $31.1 million, four-year package for legal assistance and critical early intervention support services.

Funding is provided to continue the LGBTIQ+ organisation grants program and the LGBTIQ+ Leadership Program, and $1 million for Melbourne Pride 2021, a major one-off event to celebrate and support LGBTIQ+ communities. Melbourne Pride 2021 will mark the 40-year anniversary of the decriminalisation of homosexuality by the Victorian Parliament.

The first ever Victorian LGBTIQ+ Strategy is currently in development and will guide the Victorian Government’s efforts to achieve equality for LGBTIQ+ communities over the next decade. We look forward to the next phases of this Strategy and the priority areas for change it will progress.

Caring for carers

Over 730,000 Victorians care for someone with a disability, mental illness, terminal illness, chronic illness, or an older person with care needs. The Budget provides funding to assist carers and support those they care for.

A $93 million, four-year package will support families and carers of people with mental illness through the establishment of eight family and carer-led centres across Victoria and increased funding for the Carer Support Fund, Tandem and its carer participation registers. The Families where a Parent has a Mental Illness (FaPMI) program will be expanded, and funding will be provided to co-design and expand supports for young carers.

Today's State #Budget includes $93 million in dedicated support for families & carers in mental health, incl. $23 million for young people & children caring for a family member. Read more: https://t.co/eo1VeoffEr

— Tandem (@tandemcarers) May 20, 2021

Funding is provided to improve supports available to young carers and strengthen referral pathways across mental health and wellbeing and education systems. Other initiatives that will support carers to learn, upskill, work and maintain their health and wellbeing are also welcome. As the implementation of the Victorian Carer Strategy 2018-22 reaches its latter stages, we look forward to hearing more about how priority actions of the Strategy will continue to be pursued.

We are pleased to see that “Caring for Victorians” is a headline from the Victorian Government’s 2021-22 budget and we welcome the focus on wellbeing and early intervention. See our detailed analysis of the #VicBudget2021 – https://t.co/kS7WRQUxcQ

— Carers Victoria (@CarersVictoria) May 25, 2021

Community and social participation

Supporting Victorians to access and take part in social and community life is crucial to wellbeing. We welcome funding provided for the continued delivery of Reclink’s ActiVIC program, which supports diversity and inclusion by providing more equitable access to sport and active recreation for people with disability, people from culturally and linguistically diverse backgrounds, First Nations people and people experiencing financial hardship. In addition to the public transport infrastructure investments outlined above, funding is provided to continue the Multi-Purpose Taxi Program lifting fee and wheelchair accessible vehicle subsidy, which aims to incentivise the supply of wheelchair-accessible vehicles and services for people with mobility needs.

Further investments should be targeted towards making public and community spaces accessible and inclusive for people with disability, older people and people with mobility or health conditions. The Budget’s modest $2.5 million investment in Changing Places accessible public toilets is positive, but only one piece of the puzzle. Infrastructure Victoria’s Draft 30-year Strategy recommended the immediate establishment of an accessibility upgrade fund for priority public building upgrades. Funding accessibility upgrades for public places would be a win-win for Victorians, businesses and the building sector alike. In addition, community participation and independence should be supported through the provision of additional resources for aids and equipment programs that support the independence and mobility of older people and people with disability who are ineligible for the NDIS. 

It’s a big day – your first Disability Reform Ministers Meeting with your State and Territory counterparts. 

A lot has changed since the last meeting in December 2020, attended by your predecessor Stuart Robert.

The vaccine roll out started, then faced fresh challenges. The Commonwealth’s proposed changes to the NDIS sparked widespread concern fear, anger and mistrust.  And disability advocacy organisations continued to deliver critical support in the face of funding uncertainty and growing need.

Disability Ministers have a lot to discuss when they meet today. Below are three issues that must be resolved. 

While these matters will require shared leadership, decision-making and coordinated implementation by the Commonwealth, States and Territories – as equal partners – there is much for the Commonwealth to do to restore the trust of Australians with a disability, families, carers and support workers.

1. Vaccine roll out

Some people with disability are at greater risk from becoming very sick if they catch COVID-19, but many feel left behind and forgotten in Australia’s vaccine roll out.

In Australia’s vaccine roll out schedule, people with disability in residential settings and support staff were prioritised for Phase 1A of Australia’s roll-out schedule, and adults with disability with underlying medical conditions or attending centre-based services eligible for vaccination as part of Phase 1B.  Under Australia’s COVID-19 vaccination policy, responsibility for this aspect of the rollout has resided with the Commonwealth.  Concerningly, we got to the end of March 2021 with residents and staff of just 50 residential disability facilities across Australia vaccinated. 

People with disability, their families and carers and those who support them want answers and timely access to vaccines.

2. NDIS reforms

The Commonwealth’s proposed changes to the NDIS have been a hot topic for many months. Over 100 allies across the sector, VCOSS and our members hold serious concerns about what the reforms could mean for people with disability – for example, the introduction of independent assessments and recently released information proposing a new way of funding support for children with autism. While we welcome news of a pause on the plan to roll out compulsory independent assessments, trust and confidence needs to be rebuilt.

The NDIA received over 760 submissions to its consultation process. Three days after submissions closed, the NDIA announced the organisations successful in their tenders to deliver independent assessments. High-level post-consultation summaries were released one month after submissions closed, yet as noted by Every Australian Counts, whose own submission contained 700 individual stories from individuals, “even the quickest scan makes their cherry-picking clear”.

Leaked draft changes to the NDIS Act also raised concerns among people with disability, advocates and State and Territory ministers alike.

When the Ministers last met, they talked about the importance of consultation between governments and people with disability about any changes to the NDIS – and we hope they talk about it again.

Victoria’s Minister for Disability, Ageing and Carers is one of many State Ministers who has urged the Commonwealth to go back to the drawing board and engage in meaningful consultation with people with disabilities.  People with disability want to be listened to and to see a meaningful co-design process to explore and address NDIS implementation challenges.

People with disability want to be listened to and to see a meaningful co-design process to explore and address NDIS implementation challenges.

3. Disability advocacy funding

Disability advocacy and self-advocacy organisations work alongside people with disability to understand, protect and exercise their rights. Disability advocacy has been consistently recognised by inquiries as an important safeguard to help prevent and report abuse, particularly for people who are afraid or unable to have their voices heard.

But despite the critical role disability advocates play, services are chronically under-funded and under pressure. Our members continue to report demand is outstripping supply, forcing organisations to maintain waiting lists.

For years, many disability advocacy organisations across the nation have been strung along on a series of short-term contracts that threaten their sustainability and make it difficult to retain skilled and experienced advocates.

Funding for disability advocacy is delivered through a combination of Commonwealth, State and Territory sources, however, funding has been a “constant battle” for many groups in recent years, with a lack of clarity around government roles and responsibilities for funding since the introduction of the NDIS. NSW organisations and Queensland organisations recently successfully campaigned for funding lifelines, however, we hear from our members in Victoria that funding for specific programs like the Commonwealth-funded NDIS Appeals program remains under a cloud.

A national project to assess demand and gaps in coverage for disability advocacy support has been on the table of the Disability Reform Ministers Meetings since December 2019 (PDF). We hope to see this project back on the agenda to drive certainty and stability for the disability advocacy sector, and in turn, people with disability across Australia.

We wish you well today.

We wish you every success.

The roughly four million Australians with disabilities are counting on it.

Sincerely,
The Victorian Council of Social Service.

This Issues Paper is specifically prompted by our network’s concerns that the NDIA’s proposed model of mandatory independent assessments will reinforce the growing inequalities in the Scheme. In addition to concerns, our Issues Paper outlines proposed alternative solutions.

We urge the Joint Standing Committee on the NDIS to explore these issues with rigour and to provide opportunities for people with disability, their families and carers, advocates and allies to share their views and be part of the development of a solution.

This Issues Paper is endorsed by the following VCOSS and Empowered Lives members and allies:

Introduction

The original vision of the National Disability Insurance Scheme (NDIS) was to deliver a person-centred, rights-based approach to disability support. Through a scheme based on insurance principles, people with disability, their families and carers were promised a new funding approach that focused on supporting people’s independence and participation in social, economic and community life, and promoted choice and control.

The Victorian Council of Social Service (VCOSS) and many of our allies fear the fabric of the NDIS is being eroded and the original vision for the Scheme is being lost. We hold concerns that the NDIA’s proposed model of mandatory independent assessments will reinforce the growing inequalities in the Scheme. Instead of improving access and reducing out-of-pocket expenses, independent assessments will present another hurdle for people with disability. This hurdle will be higher and harder for people who experience multiple and intersecting forms of disadvantage, and will add another layer of stress, complexity and anguish for people with disability seeking support.

The NDIS is often described as the largest social policy reform in a generation. It is right that, as the NDIS matures, we continue to identify and address implementation challenges to ensure the NDIS delivers on its promise and fulfils its goals. However, it is our position that the NDIA’s proposal to introduce mandatory independent assessments is the wrong solution to a complex implementation challenge. This Issues Paper sets out our key concerns and proposed alternative solutions.

The NDIS Participant Service Charter commits the NDIA to include people with disability and the community in developing and testing processes, and to listen to feedback to find better ways of doing things. Participants, families, carers and advocates should be engaged as equal partners with the NDIA to identify Scheme challenges and co-design fair and practical solutions. Our network – along with others – stands ready to assist in this vital work.

Issue: The proposed Access and Eligibility Policy will perpetuate barriers to access

Our concerns at a glance

The NDIA’s proposed Access and Eligibility Policy does not recognise or address the preliminary barriers that prevent access in the first place – low awareness, complex information and a lack of support.

Context

Learning about and accessing the NDIS continues to be difficult for the very people it is intended to support. Access to the NDIS relies heavily on an individuals’ agency, supports, social and financial capital. Being literate, including digitally literate; knowing about and understanding the NDIS; having the skills and confidence to self-advocate, identify support needs and goals, and exercise choice and control; and having a strong support network are all pre-requisites to access the NDIS.

The NDIS is a complex support system and, as the Scheme has evolved, a sea of key terms, acronyms and ‘magic words’ have flourished.

“You have to have the special code words to go through their programme, you’ve got to say it’s – oh, what is it they told me? Someone told me ‘psychosocial disability’ or something… so you can’t even say what it is as a mental illness, you have to know these special code words, which makes it hard for anyone to get through because, if you don’t know the special code words, you can’t even get through the front door, so to speak.”[1]

The prevalence of cheat sheets, blogs and resources that aim to explain the NDIS and NDIS-related phrases demonstrates just how murky the messages have become. The information overload, and conversely the absence of information, presents an overwhelming barrier for people commencing the access process and navigating the participant pathway. Gathering evidence and completing the Access Request and Supporting Evidence Forms is time and resource intensive. The process is inaccessible and overwhelming for many people with disability and their support network, and many people need dedicated support for this process.

People who do not have easy access to identification documents, and people who do not have an ongoing relationship with a GP, allied health professional or specialist, are likely to face difficulties in completing their access request. Expenses to gain reports, to travel to specialists and find private providers – especially where there are long wait lists in the public system – are exorbitant and out of reach for many participants and families. These challenges are particularly pronounced for people experiencing intersectional disadvantage and isolation, who may contend with additional social, financial and cultural barriers.

First Nations people with disability

While prevalence of disability is high among First Nations people, participation in the NDIS remains lower than projected by the NDIA.[2] Data from the NDIA shows a larger proportion of First Nations people with disability have their access requests cancelled due to their form not being returned, or because the NDIA was unable to contact them.[3] After completing the access process, over 40 per cent of First Nations NDIS participants do not know what happens next.[4]

Culturally and linguistically diverse people with disability

People with disability from culturally and linguistically diverse backgrounds are significantly less engaged with the NDIS than anticipated across every age group.[5] Migrants and refugees with disability, their families and supporters face challenges due to language and cultural barriers, a lack of information and resources, and problems applying for and receiving services.[6] Cultural beliefs, stigma and shame surrounding disability in some cultures can also make people and families fearful or wary of seeking support.[7]

Research by the Ethnic Communities’ Council of Victoria found almost 80 per cent of research participants reported they and their family did not have good knowledge about disability supports and the NDIS, and 90 per cent believe there is not enough information and help available.[8] A lack of supporting evidence is the leading cause of cancelled access requests for culturally and linguistically diverse NDIS applicants.[9]

People with psychosocial disability

One of the first barriers to accessing the NDIS for people with psychosocial disability is that many do not identify as having a disability or are wary of stigma. Psychosocial disability can be episodic and fluctuating. On a good day, symptoms could be easily masked or misunderstood; on a bad day, intensive support from known and trusted specialists is vital. Over one-third of people with psychosocial disability who apply for the NDIS have their application rejected.[10]

Young people with disability

Young people with disability often find it hard to understand and engage with the NDIS and to have their voice heard. The forms and resources are complicated, and sometimes the supporters and professionals young people turn to and trust are not confident in their own knowledge of the NDIS. Young people with disability who are not living with their family or carers, or who do not have stable housing, face additional challenges collecting paperwork and evidence to support their application.

People experiencing poverty, isolation and disadvantage

People experiencing poverty, isolation, socio-economic disadvantage and homelessness find it hard to learn about and access the NDIS. A study into the experiences of people facing socio-economic disadvantage who were likely to be eligible for the NDIS found 72 per cent of interviewees were either unaware of, or had distorted views about, the purpose and the eligibility criteria of the NDIS.[11] A lack of assistance, uncertainty about eligibility criteria, discouragement from or limited access to medical professionals and social isolation all present significant barriers for people seeking to apply for the NDIS.[12] People without stable accommodation and people experiencing financial hardship are not able to prioritise the NDIS access process when their focus is on their basic and immediate needs.

People with complex and co-existing needs

People living with episodic or fluctuating disabilities, or co-existing health issues, often find it hard to prove the ongoing and permanent nature of their disability and to identify the right service system for their needs. The interface with the health system, and battles over which system is responsible for what supports, is an ongoing concern for people with progressive diseases that impact their daily functioning.

People experiencing drug and alcohol issues, including many who are highly likely to be eligible for the NDIS, and frontline clinicians in this sector often find NDIS processes overwhelming and time-intensive. There are no dedicated groups or resources to support people and clinicians to understand and navigate the NDIS, so accessing the Scheme often comes down to capacity, commitment, connections and luck. People with co-existing substance dependence and disability, from falls, accidents or acquired brain injury, find the wall of engagement with the NDIS too hard and high to climb, meaning many miss out on the opportunities available through the NDIS.

Rural, regional and remote communities

People with disability living in rural and regional areas often have reduced access to health professionals due to a lack of local services, long waiting lists, lengthy travel times and transport issues. These delays and service gaps mean it can often take far longer for people with disability in rural and regional communities to collect the required evidence for their NDIS access request.

Issue: A stark shift from the principles and vision of the NDIS

Our concerns at a glance

The introduction of mandatory independent assessments, and the ways in which assessments will be used, is a worrying departure from the vision and principles of the NDIS.

Context

The NDIS was promised as a game-changer for people with disability and all Australians – a once-in-a generation opportunity to replace inefficient, stretched and rationed state-based systems with a fair, timely and reliable national system Our members fear the introduction of mandatory independent assessments will take away choice, control and independence that was intentionally placed at the heart of the Scheme.

Instead of taking a person-centred approach, and ensuring participants’ voices, dignity and agency are prioritised, independent assessments place power and influence in the hands of assessors who may not have skills and expertise in specific disabilities, functional impacts and fluctuating needs. The potential return to deficit-focused language and a renewed emphasis on the medical model of disability is a big step backwards.

“We want a scheme that provides reasonable and necessary supports for people with disability. Support so they can live an ordinary life and enjoy the same kinds of opportunities as other Australians. A fair go. No more and no less.”[13]

We urge the NDIA to not lose sight of the original vision of the NDIS and to build on the strengths of the Scheme by listening to the voices and expertise of people with disability, advocates, organisations and the wider community.

Issue: A cherry-picked solution for a complex, unsolved problem

Our concerns at a glance

The selective interpretation and use of the Productivity Commission inquiry and Tune Review reports to introduce a significant change to the Scheme is deeply concerning for many people with disability, families, carers, advocates and allies. The disparity between what was recommended and what is being proposed has contributed to confusion, concern and lack of confidence in this policy change across the disability community.

Context

The concept of independent assessments for the NDIS was initially proposed in the Productivity Commission’s Disability Care and Support inquiry in 2011. The inquiry report proposed a system that would deliver individual funding “determined by the independent assessment of need, rather than the present arbitrarily rationed amount.”[14]

The Productivity Commission suggested independent assessments, conducted by allied health professionals approved or appointed by the NDIA, could be made using a ‘toolbox’ of assessment tools. The results of assessments would then inform eligibility for the Scheme and the development of an individual plan that considers support needs and the role of informal supports. Independent assessments were not included in the design of the Scheme roll-out, in part due to the absence of the right tools.

The 2019 Tune Review, in its commentary on independent assessments, noted potential benefits including a decreased financial burden for participants; however, it also highlighted a range of considerations for the implementation of any assessment changes.

The correlation between the recommendations of the Productivity Commission and the Tune Review, and the NDIA’s proposed model for introducing mandatory independent assessments, is limited. Caveats and commentary in these reports about implementation considerations are not recognised or represented in the proposed model for independent assessments.

For example, the NDIA’s proposed approach fails to reflect the following advice from the Productivity Commission and Tune Review that:

• where possible (and with the individual’s permission), the Scheme should make use of existing medical reports[15]
• assessments should be portable across the system — subject to protection of privacy — so people do not have to repeat information for different providers or government agencies[16]
• assessments and re-assessments should occur when people join the Scheme, and again at key life stages or when circumstances change[17]
• where an informal carer provides substantial care, they should receive their own assessment if they wish[18]
• the power to require prospective participants or participants to undertake an assessment be discretionary[19]
• at least in the short term, the NDIA should not implement a closed or deliberatively limited panel of providers to undertake functional capacity assessments[20]
• key protections would need to be embedded into the approach, in particular:
  • the right to choose which NDIA-approved provider to conduct the assessment
  • the right to challenge the results of an independent assessment
  • the need for uniform accreditation requirements, designed and implemented jointly by the NDIA and disability representative organisations
  • the availability of clear, accessible publicly available information about independent assessments.[21]

Issue: Limited evidence base from pilots or community engagement

Our concerns at a glance

The narrow nature of the pilots to date and the absence of detailed evaluation does not provide sufficient evidence to support the sweeping introduction independent assessments.

Context

The first pilot of independent assessments was deployed in nine areas across New South Wales by one service provider, primarily to existing participants across three disability groups. 513 people voluntarily participated in the pilot – of this cohort, 65 per cent were aged 7-14 and 71 per cent were male.[22] Just 7 per cent were from a culturally and linguistically diverse background, and 1 per cent were First Nations people.[23]

A survey completed by 145 participants found a 91 per cent satisfaction rate with the experience[24]; however, it is not clear whether survey participants are representative of the cohort. Additionally, the survey was completed by only 35 NDIS participants themselves with the remaining responses from family members or carers.[25]

A second pilot, which was delayed due to COVID-19, recently recommenced with a view to engaging 4000 existing participants.[26] Senate Estimates figures show that as of 11 November 2020, just 215 participants accepted the invitation to participate in the pilot, 185 declined and 4496 have not yet responded.[27]

NDIS participants and the broader disability community feel they have not been listened to or provided with fair and authentic opportunities to share their thoughts and co-design solutions. The lack of information and limited transparency about proposed NDIS reforms continues to fuel fear and anxiety.

Issue: Goals and aspirations are relegated and restricted

Our concerns at a glance

The NDIA’s proposed Planning Policy flips the current participant-led, goal-oriented process and places participant planning conversations after an independent assessment and after the development of a draft plan and draft budget.[28]

Context

Goals are highly individual, personal and empowering. From moving out of home to getting a job or making new friends, the nature and scope of goals varies for every NDIS participant. Nurturing aspirations, expanding expectations and establishing a path to goal achievement takes time, commitment, systemic change and targeted support.

Placing goal conversations after the development of a draft plan and budget, informed by a brief independent assessment, will limit the pursuit of goals and see participants’ aspirations restricted by funding decisions. This change in process means people will have to fit their goals, needs and ambitions within a defined budget, and potentially present a strong argument for why they need more funding and support. There are concerns this process will not facilitate full and fair consideration of a participant’s personal circumstances. Functional capacity is not the only reason a participant may need support. Two people with similar functional needs ‘on paper could be living vastly different lives and it is not clear how social, environmental and cultural factors will be comprehensively captured by the assessment process and the subsequent plan.

In its commentary on assessments, the Productivity Commission’s 2011 report noted, “while the assessment process would primarily be about assessing an individual’s needs, it should not disregard their aspirations.”[29] Devaluing and demoting goals in the planning process reduces participants’ choice, control and agency, and does not align to the objects and principles of the NDIS Act 2013. Any assessments, where necessary, would be better placed after conversations with participants. The NDIA should invest in Planner training and capacity to have respectful, strengths-based conversations with participants about what is important to them and practical ways to pursue their goals.

Issue: Emotional impact for participants, families and carers

Our concerns at a glance

Independent assessments perpetuate – rather than resolve – participants’ concerns about Scheme access. They present a new hurdle for participants to pass – one that requires people to share personal details with a stranger who has the power to make life-altering decisions. This process creates additional and unnecessary stress and anxiety for people with disability seeking support and has the potential to be traumatic and confronting.

Context

As part of the Tune Review, people with disability, families, carers and advocates raised their concerns about access to the NDIS. People shared their personal difficulties and frustrations about navigating the bureaucracy, finding information, getting appropriate assistance, and of the evidentiary burden of accessing the NDIS.

NDIS participants are rightly afraid about independent assessments. The concept of independent assessments as proposed creates a situation where participants need to re-tell their story to another stranger and prove that it is true. The power of assessors to influence the outcomes of their NDIS access request and plan budget based a snapshot in time is significant.

Participants may feel pressure both to perform for the assessor or to illustrate what their worst day looks like to ensure their needs are understood and captured. Children who are being assessed by people they are unfamiliar with may respond or behave differently than they would with a person they know and trust. Likewise, there is a risk some participants with complex needs could mask or downplay their needs, or that their responses to questions may not be fully understood. Participants who have had had poor experiences with other government assessment processes, such as the Disability Support Pension job capacity assessment, may be especially anxious about undertaking an independent assessment. People who may have faced additional barriers to finding out about and applying for the NDIS in the first instance may be confused about and traumatised by having to re-tell their story.

Participants are able to have a support person with them for their assessment, and it is important his person knows them well and is able to contribute to the assessment where needed; however, not everyone has someone in their life who could fulfil this role.

Issue: Continued equity issues regarding evidence costs

Our concerns at a glance

The model for introducing independent assessments does not achieve the objective of reducing costs to access the Scheme.

Context

One of the key messages promoted to support the introduction of independent assessments is the need to deliver fairness and equity, particularly for people from low-income households or facing additional barriers to accessing the NDIS. The NDIA estimates Australians with disability are currently spending between $130 million and $170 million on assessments associated with accessing the NDIS.[30]

Visits to GPs and medical specialists can be expensive and wait lists are often lengthy, particularly in regional and rural communities. The cost of a private autism assessments can easily run into thousands of dollars. While some people may seek private services at their own cost, or travel long distances to see a specialist, this is not an option for participants and families on fixed or low incomes, and those without reliable support and transport.

The NDIA’s independent assessment framework itself states:

“At present, an individual is required to gather evidence of their functional capacity, prior to Scheme access, either through publicly funded services or through the private health sector. For many, obtaining this information through the private health sector is financially prohibitive and waiting lists in the public sector can be extensive. There may also be gap fees even with Medicare funded services which are prohibitive for some people. In addition, other cultural and social barriers may make access to the Scheme problematic for some. Changes to the assessment process should seek to level the playing field so that financial, cultural, social, education and literacy factors do not contribute to delays or barriers to accessing the Scheme.”[31]

Under the proposed access process, independent assessments are available after a participant has met the NDIS eligibility requirements[32] – to meet eligibility, prospective participants will still need to provide evidence of their disability[33]. This barrier is not removed or reduced for people experiencing disadvantage, marginalisation and hardship, and the change in policy will not improve the equity of experiences and outcomes.

The anticipated costs to introduce independent assessments, or alternative options, have not been made publicly available. This is unusual given the NDIA’s focus on Scheme sustainability.

Cost modelling for a range of assessment options and measures to increase equity (see page 24) should be conducted to ensure the most efficient, effective and fair option is selected.

Issue: Communication and advocacy barriers

Our concerns at a glance

The NDIS ‘assumes empowerment’. While we applaud a strengths-based approach, an assumption of empowerment fails to consider the long-tail effects of entrenched systemic discrimination of people with disability and required mitigation.

Context

The NDIS requires participants to self-advocate to have their needs met. This is predicated on an assumption that all participants have the skills, knowledge, confidence and opportunity to do so. NDIS participants are not one homogenous group. There is a diversity of lived experience.

This assumption about self-advocacy capacity can unwittingly hinder the participation of diverse communities who may face barriers in accessing and understanding the system and in articulating and advocating for their goals and needs[34], while people who feel confident and empowered to articulate their needs are likely to receive greater support from the Scheme.

The assessment tools, which collect evidence through interviews, questionnaires and observation, are likely to be more accessible and beneficial for people who can confidently self-advocate for their rights, interests and needs. People who speak English as a second language, who communicate with the support of an interpreter and people with complex communication needs may find it harder to participate and be heard in these assessment processes. People with psychosocial disability may also find this process challenging due to the impact of their condition. For example, people who experience auditory hallucinations or delusions of grandeur, or find it hard to trust and communicate with new people, may have difficulty expressing their needs during assessments.

Participants will be able to have a support person with them during their assessment, and under the proposed policy, the NDIA will help to find a support person for people who request one. However, it is not clear who the NDIA anticipates will undertake this role. Any resulting increase in demand for individual advocacy, which is already under considerable pressure, will need to be supported by appropriate, timely and ongoing funding.

Issue: Inconsistencies in the use and interpretation of assessments

Our concerns at a glance

Despite the focus of independent assessments being on delivering consistency, the window for varied interpretation of assessments remains wide open.

Context

Under the current and proposed models, people with disability must provide evidence to support their access request and the planning process. An ongoing and outstanding issue with supporting evidence that is not addressed by the proposed Access and Eligibility Policy is the variable interpretation of reports by NDIA delegates, Planners and Partners in the Community.

Feedback provided to the Tune Review indicated some Planners are either not fully considering the reports participants provide, or are not sufficiently taking into account the recommendations of experts.[35]

These findings were echoed in the NDIS Joint Standing Committee’s NDIS Planning Inquiry, which heard Planners may be ignoring or changing expert recommendations provided by allied health professionals about participants’ personal needs, recommending cheaper supports or asking participants to choose between supports.[36]

Under the proposed planning process, NDIS delegates will develop a budget based on the outcomes of an independent assessment[37], but it is not clear if or how delegates will be trained in understanding and interpreting assessments for this purpose. Our members hold concerns that assessment results will be used to generate an arbitrary amount of plan funding.

Issue: Independence of assessors

Our concerns at a glance

Assessors contracted by the NDIA will face unavoidable conflicts of interest and challenges to their genuine ‘independence’.

Context

The NDIA has already progressed work to establish a panel of assessors through a tender process. The tender was opened in March 2020[38], before the pilot of independent assessments was completed, before an evaluation of the pilot was completed and made publicly available, and without any targeted communication to participants, their families, carers and supporters.

In 2011, the Productivity Commission recommended assessors be drawn from an approved pool of allied health professionals, who do not have an existing connection to the person being assessed, to reduce the potential for ‘sympathy’ bias.[39] However, the more recent Tune Review in 2019, informed by the reality of the Scheme roll out and participant experiences, recommended the NDIA should not implement a closed or deliberatively limited panel of providers to undertake functional capacity assessments, at least in the short term.[40] The Tune Review notes risks related to the introduction of a closed panel, including disengagement and the potential for disproportionate impact for First Nations people with disability, culturally and linguistically diverse people with disability and people with psychosocial disability.[41]

In choosing a panel approach, whereby assessors are engaged and paid by the NDIA, conflicts of interest are not removed; they are displaced. Assessors contracted by the NDIA will face unavoidable conflicts of interest and challenges to their genuine ‘independence’ – delivering the desired outcomes to the structures, timeframes and priorities of the NDIA will be vital to assessors’ ongoing employment. The NDIA’s 2019-2020 Annual Report and Corporate Plan 2019–2023 pay considerable attention to delivering a financially sustainable Scheme and managing cost drivers. These aspirations may impact the work and decision-making of independent assessors, who hold considerable power in relation to the supports participants receive.

Issue: Quality and expertise of assessors and assessments

Our concerns at a glance

Under the proposed model to introduce independent assessments, the expertise of health professionals and the value of existing clinical relationships is diminished.

Context

Through the transition to the NDIS, participants and health professionals have navigated significant confusion about the evidence required by the Scheme. The Tune Review heard:

“…that it is unclear what evidence is needed to support decisions about a person’s functional capacity, and there is no actively promoted or standard format for prospective participants, participants and their health professionals in which to provide that evidence. This has resulted in people submitting evidence that is not always fit for purpose, varying in quality and consistency and requiring back-and-forth interaction to obtain what is needed for the NDIA to be satisfied in discharging its functions under the NDIS Act.”[42]

Reports and other supporting evidence are often rejected or dismissed by the NDIA if they do not use particular language or ‘magic words’. This remains the case even where the evidence provided is substantial, carefully considered and completed by experienced and qualified professionals with deep understanding and rapport with participants.

The core problem has been a lack of clarity about evidence requirements. This has given rise to frustration, expense and wasted time for people with disability and health professionals alike. However, the NDIA’s proposed model for mandatory independent assessments is not the right solution to this problem.

GPs, specialists and allied health professionals play an important role in the lives of many people with disability. Over time, through building trust, rapport and understanding, health professionals get to know people with disability well.

The assessments made by independent assessors, who do not have deep knowledge of participants, will take precedence in determining access to the Scheme and the provision of funding. It is not clear how, and to what extent, existing evidence from other health professionals will influence access and planning processes and decisions.

People with disability have a diverse range of experiences and histories with medical and health professionals. Forcing people with disability to ‘prove’ their disability to a stranger in a matter of hours is likely to be traumatic, intrusive and ineffective. The time-limited nature of the proposed independent assessments, which can take place for as little as 20 minutes, is highly concerning for many people with disability and their supporters. People who have difficulties in speaking up about their rights and needs, for a range of social and cultural reasons, are likely to be more disempowered by this approach.

Independent assessments will not have the scope to capture how people function in different settings, times and days. For example, one-on-one interactions may be manageable for a person who is Deaf or hard of hearing to communicate without support, however, group situations or other environments may be more difficult. Likewise, a participant’s needs in work, home or social settings is likely to vary.

A recent case in the Administrative Appeals Tribunal (AAT) highlights the disparities in the depth and quality of assessments by known, trusted health professionals versus an unknown independent assessor. The tribunal found the observations made by the existing treating health professional across 50 to 60 occasions in a variety of environments to be more reliable and accurate than a single, three-hour assessment in one environment.[43]

Issue: Workforce considerations

Our concerns at a glance

The availability of allied health services and the strength of the allied health market, particularly in regional and remote areas, was already a chronic issue prior to the introduction of the NDIS.[44] There is currently a shortage of allied health professionals working in the disability care sector[45], and providers find allied health roles the most difficult to recruit and retain[46]. Placing a new, additional demand on the stretched allied health sector to deliver independent assessments may further constrict access to treatment and care.

Context

Under current NDIS processes, where participants may be required to seek an additional assessment at the NDIA’s request and cost, workforce challenges are contributing to significant delays. In some instances when alternative, local therapists cannot be found, allied health professionals from other regions travel long distances to the participant, or the participant’s initial treating health professional is eventually engaged for the assessment.

Allied health professionals with past negative experiences of completing NDIS assessments, where their professionalism is questioned or advice ignored, may be even more reluctant to participate in this new process.

VCOSS members believe the implementation of independent assessments will be unachievable, or detrimental to the market, unless workforce development and retention strategies are developed. Recruiting trained and experienced assessors will be a difficult and long process, particularly in rural and remote areas, and the need to create a large, additional workforce quickly raises concerns about the experience and expertise of assessors.

Issue: Right to pursue grievances and seek exemptions

Our concerns at a glance

Under the NDIA’s proposed approach, the findings of an independent assessment can only be challenged in limited circumstances.

Context

The NDIA consultation paper states:

“Disagreeing with the results of an otherwise sound and robust independent assessment is not sufficient for the NDIA to fund another assessment. Applicants can only seek a second assessment where the assessment was not consistent with the independent assessment framework, or if the applicant has had a significant change to their functional capacity or circumstances.”[47]

Placing tight parameters on participants’ rights to request a review of an independent assessment denies access to fairness and justice. Under the principles of the NDIS Act 2013, people with disability have the right to pursue grievances, to determine their best interests, exercise choice and control, and engage as equal partners in decisions that affect their lives to the full extent of their capacity.[48]

The process for determining inconsistencies with the independent assessment framework, and the supports available for current and prospective participants to seek a second assessment, are yet to be defined or publicly released.

As with NDIS review and appeal processes, many people with disability, families and carers will need support to pursue these options. Demand for individual disability advocacy support is already under pressure across Australia and would need a significant boost to meet this need.

Exemptions from independent assessments are available in exceptional circumstances, but these circumstances are not defined.[49]

VCOSS members are concerned that the participants who are most likely to need an exemption may face greater barriers in seeking one, because they may not have the resources, capacity and confidence to pursue this avenue. The proposed policy also states that requests for exemptions that are rejected cannot be appealed.[50]

These policy provisions run the risk of deepening disadvantage and accelerating Scheme exits for people who do not know how to interact with the access and assessment processes.

Solutions: A reasonable and necessary approach to evidence requirements

VCOSS members believe the hasty introduction of independent assessments is the wrong answer to a complex and multi-faceted problem. NDIS participants and the communities they live in are diverse. Applying a one-size-fits-all approach to gathering evidence is unlikely to promote equity. Ensuring all participants have access to assessments is one means to address access and planning inconsistencies, but it is not a silver bullet.

The NDIA should work in partnership with people with disability, their families and carers, advocates and allies to carefully and transparently explore all options for improving the NDIS.

Adopt a human rights based approach to co-design a solution

Under the UN Convention on the Rights of Persons with Disabilities (CRPD), Australia is obliged to closely consult and actively involve people with disability in decisions that affect their lives and rights, particularly the development and implementation of legislation and policies.[51]

People with disability, their families and carers, advocates and allies know more than anyone what it is like to navigate the NDIS and are well placed to share their expertise and ideas for change.

To respect and abide by the CRPD, the objects and principles of the NDIS Act 2013, and uphold commitments made under the NDIA Participant Service Charter, the NDIA must undertake open-minded, meaningful and substantial stakeholder engagement and consultation to co-design practical, fair and impactful solutions to key Scheme challenges.

Recent research into the disability assessment practices of 34 European countries and compatibility with the CRPD identifies key features of best-practice, rights-based assessment processes and policies.[52]

Analysis by Waddington and Priestly suggests public authorities should:

• Consult with and involve disabled people’s organisations and human rights bodies in design and regular review processes
• Embed the social and human rights model of disability in the design and implementation of assessments
• Support people with disability to actively participate in generating evidence for their individual assessments, for example, through peer-supported self-assessment
• Involve multidisciplinary expertise within the disability assessment system, including human rights expertise
• Provide accessible and user-friendly information about application processes, eligibility criteria, appeal and support options, and supports available after an assessment is completed
• Eliminate duplicative or multiple methods of assessments, to increase consistency and transparency in processes and reduce administrative burden.[53]

Additional CRPD articles the NDIA’s approach to assessments should specifically abide by include:

• The right to dignity, respect, participation, inclusion and opportunity
• Respect for the autonomy and independence of people with disability, including the freedom to make choices
• The right to access information and access justice – including the right to review or appeal the contents and outcomes related to assessments
• The right to an adequate standard of living and social protection.

People with disability, families, carers, advocates and allies are ready and willing to support the NDIA and the Department of Social Services to design fair and equitable solutions to the address the barriers and challenges experienced across the NDIS pathway.

Explore and cost alternative options

To ensure NDIS reforms and initiatives target the true barriers to access and equity, the NDIA should explore multiple options and strategies. While independent assessments may work for some participants, in some circumstances, the process may be traumatising, unnecessary or a waste of time for others.

VCOSS and Empowered Lives members readily identified a range of alternatives that may be more cost-effective, beneficial, and respectful of existing care relationships. Enabling participants to access local, culturally safe and gender-sensitive options, through approaches that integrate with existing systems and workforces, would be practical and sustainable option.

Suggestions to improve the access and eligibility pathway include:

• Better resourcing pre-access communications and engagement initiatives to help people to understand the NDIS, consider whether they are eligible and prepare for applying by:
  • Strengthening the capacity of the Information, Linkages and Capacity Building stream to deliver targeted and ongoing early engagement activities through Partners in the Community and grant-based programs
  • Partnering with existing, trusted organisations and networks to provide information, advice and soft entry points for communities, ages and life stages
  • Investing in research to explore the prevalence of disability across a range of cohorts and service systems to inform action to address specific NDIS access barriers.

• Developing clearer guidance and templates for health professionals completing reports, noted as a potential driver for inconsistency and an area for improvement by the Tune Review and the NDIS Joint Standing Committee inquiry into NDIS Planning.[54]

• Addressing financial barriers to collecting evidence by funding access to early, free and optional assessments to support participants’ NDIS applications:
  • Assessments should be conducted by the participants’ chosen local provider
  • Assessment costs could be offset by a Medicare rebate or similar financial support
  • Assessments should be targeted to assist people who are new to adapting to their disability, people who do not have a history with or access to an existing provider or assessor, and people whose support needs are unclear.

• Honouring the integrity and value of existing expert advice, reports and assessments, and only seeking additional assessments where necessary.

• Improving capacity and skills of Planners and delegates to understand, interpret and apply the findings of reports and assessments to access and planning processes.

• Increasing employment of people with disability across the NDIA and Partners in the Community to deliver experience-informed support across every step of the NDIS journey.

• Working with Governments and sectors to address systemic issues that impact access to the NDIS, including health and allied health workforce challenges and waiting lists.

Given the heightened focus on the financial sustainability of the Scheme, it is important that a range of options and pathways to are identified, modelled, costed and tested. Without this detailed analysis, there cannot be confidence that the selected approach is the best approach – for participants, their carers and families, or the Australian Government.

[1] Mavromaras et al, Evaluation of the NDIS: Final Report, National Institute of Labour Studies, February 2018, p.191.

[2] NDIA, Aboriginal and Torres Strait Islander participants, 30 June 2019, p.18.

[3] Ibid., p.23.

[4] Ibid., p.83.

[5] NDIA, Culturally and Linguistically Diverse participants, 30 June 2019, p.20.

[6] ECCV, ‘It’s Everybody’s Business’: Multicultural Community Perspectives on Disability and the NDIS, June 2019, p.8

[7] Federation of Ethnic Communities’ Councils of Australia et. al., Barriers and exclusions: The support needs of of newly arrived refugees with a disability, February 2019, p.24-25; ECCV, ‘It’s Everybody’s Business’: Multicultural Community Perspectives on Disability and the NDIS, June 2019.

[8] Ibid., p.10.

[9] NDIA, Culturally and Linguistically Diverse participants, 30 June 2019, p.23.

[10] NDIA, NDIS Quarterly Report to disability ministers Q2 2020-2021, December 2020, p.96.

[11] C Cortese, F Truscott, M Nikidehaghani & S Chapple, Hard-to-reach: the NDIS, disability, and socio-economic disadvantage, Disability & Society, June 2020, p.13.

[12] Ibid.; K Paterson, Homelessness and the National Disability Insurance Scheme – Challenges and Solutions, Council to Homeless Persons, May 2017, p.2

[13] Every Australian Counts, ‘The politics of distraction…’, 5 February 2021, accessed 15 February 2021.

[14] Productivity Commission, Disability Care and Support: Inquiry Report Volume 1, July 2011, p.257.

[15] Ibid., p.334.

[16] Ibid., p.314.

[17] Ibid., p.326.

[18] Ibid., p.340.

[19] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.67.

[20] Ibid.

[21] Ibid, p.66.

[22] NDIA, Independent Assessments: Pilot learnings and ongoing evaluation plan, September 2020.

[23] Ibid.

[24] Ibid.

[25] R Clun, ‘Just not OK’: Only 6 per cent of NDIS trial participants completed survey, Sydney Morning Herald, 23 December 2020. accessed 23 December 2020.

[26] NDIA, The second independent assessment pilot, accessed 22 December 2020.

[27] Senate Community Affairs Legislation Committee, Budget Estimates – 29 October 2020: Answer to questions on notice, Social Services Portfolio, National Disability Insurance Agency, Reference NDIA SQ20-000342, 16 December 2020.

[28] NDIA, Consultation paper: Planning Policy for Personalised Budgets and Plan Flexibility, November

[29] Productivity Commission, Disability Care and Support: Inquiry Report Volume 1, July 2011, p.308.

[30] NDIA, Independent Assessment Framework, August 2020, p.27.

[31] Ibid., p.8.

[32] NDIA, Consultation paper: Access and Eligibility Policy with independent assessments, November 2020, p.10.

[33] Ibid., p.13.

[34] Federation of Ethnic Communities’ Councils of Australia et. al., Barriers and exclusions: The support needs of of newly arrived refugees with a disability, February 2019, p.19-20.

[35] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.62.

[36] Commonwealth Joint Standing Committee on the NDIS, NDIS Planning Final Report, December 2020, p.xxi, 48-49, 55-56, 115-124.

[37] NDIA, Consultation paper: Planning Policy for Personalised Budgets and Plan Flexibility, November 2020, p.9.

[38] Australian Government, Aus Tender – Closed ATM View – RFT 1000724626, accessed 22 December 2020.

[39] Productivity Commission, Disability Care and Support: Inquiry Report Volume 1, July 2011, p.327.

[40] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.67.

[41] Ibid., p.66.

[42] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.60.

[43] Villamanta Disability Rights Legal Service Inc and Gippsland Disability Advocacy Incorporated, Joint media release: AAT rejects NDIS Independent Assessment, 9 September 2020, accessed 23 December 2020.

[44] Commonwealth Joint Standing Committee on the NDIS, NDIS Planning Final Report, December 2020, p.202.

[45] Department of Social Services, Building the Local Care Workforce: Allied health, accessed 24 December 2020.

[46] National Disability Services, State of the Disability Sector Report 2020, December 2020, p.48.

[47] NDIA, Consultation paper: Access and Eligibility Policy with independent assessments, November 2020, p.23.

[48] Australian Government, National Disability Insurance Scheme Act 2013, s.4(7) and (8).

[49] NDIA, Consultation paper: Access and Eligibility Policy with independent assessments, November 2020, p.20-21.

[50] Ibid., p.21.

[51] UN, Convention on the Rights of Persons with Disabilities Article 4.3, 2006.

[52] L Waddington and M Priestley, A human rights approach to disability assessment, Journal of International and Comparative Social Policy, 1–15, October 2020.

[53] Ibid., p.10.

[54] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.73; Commonwealth Joint Standing Committee on the NDIS, NDIS Planning Final Report, Recommendation 17.

The NDIS is a tangled web. I often describe it as like dealing with Centrelink, Telstra and the tax office all rolled together – a frustrating bureaucratic system where you can’t just contact one person and get a straight answer. I sometimes feel like you need a university degree just to understand what funding you have and how you can use it.

I’m Deaf. I have excellent English and comprehension, but even I opted to be NDIS Plan Managed because I wanted this all to be someone else’s problem – it was a bridge too far for me to try and work it out myself, on top of the daily tiredness that most people with disabilities feel from scaling the barriers we hit up against every day. How must people who have English as a second language feel, or people with disabilities that affect cognition, trying to navigate a scheme that I and so many others just cannot work out?

The first hurdle I faced was having to prove I needed the support in the first place. I wear a Cochlear Implant, and on a good day – if the environment and lighting is right, the room is quiet, and the people speaking to me aren’t accented/bushy bearded/chronic mumblers – I can hear and speak really well. I can hear around 75 per cent of speech, and a tad more with the aid of lipreading.

However, once the environment changes – or I’m tired or I have a headache or your accent is unfamiliar to me – my capacity to understand reduces significantly. Sometimes to zero. My audiologist gets it. The services I use (providers of Auslan interpreters, Live captioners) all get it. My closest family, friends and colleagues get it. But now I had to explain it to a Local Area Coordinator who didn’t come from a background in disability.

Having heard all the horror stories, I was prepared to show up presenting myself on my worst ‘zero capacity’ day. I had to advocate hard for what I needed, but I got my NDIS plan and it met my basic needs.

Then came the announcement about Independent Assessments.

The plan is that there will be independent allied health professionals, not previously known to you, who will assess your functional capacity – so not what you can’t do but what you can do. This will take between 20 minutes and three hours. You need to have someone who knows you well attend the assessment and be interviewed, to back up what you say about your function.

Once the Independent Assessor makes the call on how functional you are, you’re then issued with a funding amount to spend on your access needs for your entire plan life. You get the funds given to you at different intervals and you need to budget for the support you need.

The clincher though: you cannot dispute the results of the Independent Assessment if they get it wrong. 

I have so many problems with this. One is that, of the types of allied health professionals listed – seven altogether – none of them know my disability, and nor have I had any interaction with any of them.

Who are they to come and visit me for 20 minutes to three hours and judge how ‘functional’ I am? They may catch me on a good day, or a bad day, and this has the potential to make or break whether I get access or not.

My second problem is the interval payment – why do I have to save for access and support needs the way I might have to save to buy a handbag? For example, I can’t predict when I’m going to get sick, need to see a doctor and need hours of Auslan interpreters to help me with access – what if I run out of funding that month? Is it reasonable to expect me to contact the NDIA and go through a rabbit hole of processes to try and get more funding released, all while I’m at my worst capacity level and need access right at that moment? 

Another problem is that I still need to run around and get my own reports from my own medical professionals to get access to the scheme in the first place. I still need to advocate my case, and now I need to go through the process of ‘proving’ my disability again with an Independent Assessor. Why? And why do I need someone to be with me to make sure I’m telling the truth? Is there a reason why I – and specialists who’ve known me my whole life – won’t be believed?

The worst part: if they get it wrong, I cannot contest their assessment. Where is the justice in this? What are MY rights?

Who are they to come and visit me for 20 minutes to three hours and judge how ‘functional’ I am?

I got angry about it, but I also decided that I would do the right thing and attend the consultations or respond to the consultation papers. Surely, I thought, when the NDIA hears about all the problems with the Independent Assessment process they’ll review their decision. I was certainly not the only one with these concerns.

I attended the consultation online, to answer questions about the proposed changes. However, what became quickly clear was that the NDIA was only interested in asking specific, narrow questions: about how they can make sure that people with disabilities get the message and understand the Independent Assessment process, and how they can get the message out further in the community.

There was not one question about what we thought about Independent Assessment, the impact on us as participants, or any concerns we had about the process itself.

It was clear that the decision had already been made.

I tried to include my concerns and feedback in the chat box anyway, and the response I received – on repeat after every comment I made – was “we are ensuring that all feedback is documented and sent to the NDIA. If you have a question or comment during the session, please type it here.”

The NDIS was set up to enable us to have choice and control over the support we receive, so that we’re able to live an ordinary life. Independent Assessments are putting complete control over my ability to live an ordinary life in the hands of seven groups of professionals that I’ve never had contact with – and providing me no recourse if they get it wrong. The possibility of them getting it wrong is extremely high.

I’m the best judge of my function and capacity; no one knows what I need more than I do. But you don’t even have to trust me – instead listen to the specialists who’ve known me my entire life and who understand my disability.

It is time for the NDIA to get up on the balcony and look at what they have created and how far away it has moved from its original vision of empowering people with disability to have choice and control.

Independent Assessments are absolutely appropriate in some cases, but a blanket rule for everyone will create more problems that the scheme doesn’t need.

It is a lot more worthy of respect – in fact it would show great and daring leadership – to retract, apologise for getting it wrong, listen to the participants and make changes to get it right; rather than powering ahead with something that is going to cause far more pain.

The delivery of the final report of the Royal Commission comes with great emotion and expectation for older people, their families and loved ones, particularly those who bravely shared their personal experiences and ideas for change, and all Australians who want to see a safe, high quality support system for older people. 

The Commissioners made 148 recommendations in their final report. While we continue to work through the detail of the final report, we summarise below some of the key recommendations. 

Promising initiatives 

A new rights-based Aged Care Act 

The Commissioners recommend a new Aged Care Act be established, with a focus on the protection and promotion of the rights of older people to access to quality, safe and timely support, enjoy social participation and dignity, exercise self-determination and live free from harm, mistreatment and neglect (Recommendations 1, 2 and 3). As stated by the Commissioners: 

“For too long, legislation has focused on the funding requirements of aged care providers rather than the genuine care needs of older people.”¹ 

The Act would set out the rights of older people to access care in a significant shift away from the current ration-based system.² 

A comprehensive, national approach to ageing 

Australia needs a long-term plan for how housing, health and community-based aged care services will meet the changing needs of our ageing population. Recommendation 4 provides a vehicle for this. It calls for an integrated system for the long-term support and care of older people, to be delivered through the creation of a new National Cabinet Reform Committee on Ageing and Older Australians, established between the Australian and State and Territory Governments, with immediate work to develop a 10-year strategy in consultation with older people (Recommendation 4). 

More choice and better access to services 

The Commissioners recommend a range of reforms to improve access to support, including: 

• the replacement of existing assessment programs and services with one assessment process by July 2023 (Recommendation 28) 

• addressing the Home Care Package waiting list by: 

• clearing the waiting list by December 2021 
• publicly reporting on progress in clearing waiting list from 31 March 2021 
• approving new Home Care Package applications within a month from January 2022 to July 2024 
• establishing a short-term program to help people connect to providers (Recommendation 39) 

• replacing the Aged Care Provision Ratio (“a tool for limiting and apportioning subsidies”) with a needs-based planning regime by July 2024 (Recommendation 41) 
• the implementation of grant-funded programs by July 2022 for: 

• early and more frequent respite support (up to 63 days per year) in-home and centre-based (Recommendation 32) 
• social supports to reduce and prevent isolation and loneliness, including centre-based activities, delivered meals and transport – coordinated locally and provided by councils, community organisations and businesses (Recommendation 33) 
• assistive technology and home modifications (Recommendation 34) 

• a star rating system to share performance information for people seeking care (Recommendation 24). 

Through a range of measures, the Commissioners outline an agenda to ensure no young people enter aged care from January 2022, and no young people live in aged care from January 2025 (Recommendation 74). The Commissioners also recommend measures be taken to ensure every person receiving aged care who has a disability can access equivalent supports to those that would be available under the NDIS for people aged under 65 with the same or similar conditions (Recommendation 72). 

The Commissioners also provide commentary on the need for greater oversight and stewardship of the increasingly marketised aged care sector, which has become dominated by large for-profit providers and lost focus on its values and social ‘mission’ to provide safe and high quality care. 

Advocates and system navigators to support people to access services that meet their needs 

The Commissioners recommend funding for a new workforce of personal advisers for older people, their families and carers, called ‘care finders’ from July 2023 (Recommendation 29). Care finders would help people to find information, identify and link into options and act as a case manager. The Commissioners also recommend further consultation to determine the extent of unmet demand for advocacy services, and in light of findings, increased funding to establish a sustainable funding base. In the interim, additional funding should be provided by July 2021 to enable at least 5 per cent of older people to access advocacy services, to increase education and systemic advocacy, and to support the capacity of the advocacy network through training and consistent guidelines and processes (Recommendation 105). 

Support for carers of older Australians 

The Commissioners recommend strengthening support for carers by ensuring carers are identified during assessment processes and referred to respite and other supports. They call for better links, referral and information sharing between My Aged Care and the Carer Gateway (Recommendation 42).  

Carers’ rights to access support for themselves and those they care for would be enshrined in the new Act proposed by the Commissioners. This has been welcomed by Carers Australia: 

“The Commission has highlighted a clear common theme in what the community expects from the aged care system which includes the desire for a good quality of life and ageing at home. This can only be achieved if informal carers are supported in their role with readily available respite, training, and support services.”³ 

A community-based Carers Hub network is also proposed.  

Commissioner Briggs also proposes the Government examine the potential impact of amending the National Employment Standards to provide for an additional entitlement to unpaid carer’s leave, with results of this investigation made public by 31 December 2022 (Recommendation 43). 

Safe, high quality, person-centred residential aged care 

There is a suite of recommendations to improve oversight and regulation of the quality and safety of residential aged care including: 

• new provider approval requirements by July 2024 (Recommendation 94) 
• accreditation requirements for high-level home care services by July 2024 (Recommendation 93) 
• protection for whistle-blowers through the new Act (Recommendation 99) 
• a new and expanded incident reporting scheme (Recommendation 100) 
• greater monitoring powers of Quality Regulator to conduct inquiries, enter premises and access documentation (Recommendation 97) 
• a wider range of enforcement powers to issue infringement notices, banning orders, suspend or remove people responsible for non-compliances and/or revoke a provider’s approval (Recommendation 103) 
• Improved complaints management through a Complaints Commissioner responsible for handling complaints, referring and coordinating complaints, and promoting open disclosure and better practice in complaint handling (Recommendation 98). 

Minimum staff time quality and safety standards 

The Commissioners recommend the introduction of minimum quality and safety standards relating to staff time and skills mix for approved residential aged care providers. It is proposed that from 1 July 2022, a minimum staff time standard of 200 minutes per resident per day for the average resident is recommended, with at least 40 minutes of that staff time to be provided by a registered nurse. In addition, the standard should require at least one registered nurse on site per facility for the morning and afternoon shifts (16 hours per day). These timings and shifts are proposed to increase from July 2024 to a minimum of 215 minutes per resident per day for the average resident, at least 44 minutes of that staff time provided by a registered nurse, and a requirement to have at least one registered nurse on site per residential aged care facility at all times. (Recommendation 86). It is also recommended providers be required to report quarterly staffing hours by July 2022 (Recommendation 122). 

Restricted prescription of antipsychotics in residential aged care 

The Commissioners express concern about the overuse of medication or chemical restraint via inappropriate use of antipsychotics. They recommend that the Pharmaceutical Benefits Scheme Schedule is amended by November 2021 to enable only psychiatrists or geriatricians to initially prescribe antipsychotics as a pharmaceutical benefit, and to enable general practitioners to issue repeat prescriptions of antipsychotics as a pharmaceutical benefit for up to a year after the date of the initial prescription. 

A skilled, experienced and valued workforce 

The Commissioners make a range of recommendations to attract, retain and upskill the aged care workforce, which needs to grow to over 800,000 people by 2050 to meet the demands of the ageing Australian population.⁴ Key recommendations include: 

• the establishment of an Aged Care Workforce Planning Division to undertake long-term workforce planning and modelling and develop an interim workforce strategy and framework, informed by a workforce census every two years, consultation with the education and training sector, and a focus on addressing service coverage in thin markets (Recommendation 75) 
• a review of the aged care qualifications and skills framework, occupational groups and job grades, competency and accreditation requirements, job titles and definitions (Recommendation 76) and of certificate-based courses for aged care (Recommendation 79) 
• collaborative work to map aged care career pathways and deliver a national multimedia awareness campaign (Recommendation 76) 
• the introduction of Certificate III as the mandatory minimum qualification required for personal care workers performing paid work in aged care (Recommendation 78) 

• the establishment of a national registration scheme for the personal care workforce (Recommendation 77) 
• fast-tracked development of accredited, nationally recognised short courses, skills sets and micro-credentials for the aged care workforce (Recommendation 81) 
• funding for teaching aged care programs, in collaboration with educational institutions and facilitating placements for students (Recommendation 83) and a scheme to reimburse providers for the cost of education and training of their direct care workforce (Recommendation 114) 
• the introduction of policies and procedures to preference direct employment of staff (Recommendation 87). 

The Commissioners also recommend the Government, the Aged Care Pricing Authority, employee representative organisations and employers collaborate to apply and vary wage rates and awards to reflect the work value of aged care workers, seek to ensure equal remuneration for men and women workers, and ensure pricing reflects the costs of delivering high quality and safe care (Recommendations 84 and 85). 

Better access to health services 

To support the health of older Australians, the Commissioners recommend short-term changes are made to the Medicare Benefits Schedule to improve access to medical and allied health services (Recommendation 61) and the establishment of a new Senior Dental Benefits Scheme from January 2023, to fund dental services for people living in residential aged care, people who receive the age pension and/or qualify for the Commonwealth Seniors Health Card. Dental benefits are proposed to be set at a level that minimises gap payments and to subsidise the additional costs related to outreach services and travel to remote areas (Recommendation 60). 

Clearer roles and responsibilities between governments 

The Commissioners recommend the National Health Reform Agreement is amended to include a specific statement of roles and responsibilities of aged care providers, States and Territories in relation to health care (Recommendation 69), similar to the Applied Principles and Tables of Support established to support interfaces with the National Disability Insurance Scheme (NDIS). 

Further policy directions 

Achieving the transformational change required to improve and reform the aged care system will take commitment and investment. The Commissioners note in their summary: 

“Over the last several decades, successive Australian Governments have brought a level of ambivalence, timidity and detachment to their approach to aged care. Responsibility for critical governing functions of setting goals, close monitoring and timely interventions has not been articulated adequately.”⁵ 

While the Commissioners provide alternative recommendations in some areas of the final report, they both strongly conclude that fundamental change is needed.⁶ The positioning of aged care as a lower priority, and insufficient and insecure funding that focuses on restraining growth in expenditure, must be addressed. 

A strong governance approach 

The Commissioners present different approaches to future governance of the aged care system –Commissioner Pagone recommends an independent statutory body, the Australian Aged Care Commission, is established to act as system governor, administrator and regulator (Recommendation 5), whereas Commissioner Briggs recommends these responsibilities remain with a reformed department.⁷ The Commissioners also recommend an independent review of the Aged Care Quality and Safety Commission by May 2021, with findings to be addressed by January 2022 (Recommendation 104), as well as more public reporting from the Commission or its successor body (Recommendation 105). 

Adequate and sustainable funding 

The Commissioners made separate recommendations in relation to how aged care should be funded. Commissioner Pagone recommends a Productivity Commission investigation into financing of the aged care system through an Aged Care Levy (Recommendation 138) and Commissioner Briggs recommends the introduction of a 1 per cent flat rate levy on taxable personal income by July 2022 to establish an aged care improvement levy (Recommendation 144). Both Commissioners recommend individuals who assessed as needing certain supports should not be required to contribute to the care-related costs (R 125). Commissioner Pagone and Commissioner Briggs provide different proposals for co-contribution and means testing for individuals accessing residential aged care (Recommendations 128, 129, 140, 141). The question of funding should not undermine the urgency with which governments need to act. 

Additional measures that support people to age-in-place 

The recommendation to immediately address the Home Care Package waiting list will support more older people to age in place, and support carers in their caring role – however, other measures will be important in supporting people to live at home for longer, including improved access to affordable and accessible housing, reducing poverty and disadvantage, promoting health and wellbeing services and building social and community connections. 

To read the Royal Commission’s full report, summary and recommendations, visit the Aged Care Royal Commission website. 

The words ‘snap lockdown’ have been added to our communal shudder-inducing lexicon – alongside exponential, unprecedented and late press conference. 

Most of the state is moving on quickly from that five-day blip, now that the outbreak appears to be contained and the donut days are rolling again. 

But for some Victorians the ripples of the lockdown continue to be felt – particularly young Victorians with disability and their families. 

The Association for Children with Disability has heard from families whose children were so distressed by the changes that it’s impacted their ongoing wellbeing and behaviour. 

For some children with disability, change can be hard to deal with. Children with intellectual disability can struggle to understand the reasons for everything changing so quickly, and to understand how long changes will last. 

It doesn’t help that the rules have been so shifting for them: during the early lockdowns children with disability were at home like their peers, but in regional Victoria the recent snap lockdown was the first time since May 2020 that they couldn’t go to school, and in the mid-year lockdowns students with disability in metropolitan Melbourne were able to keep attending.  

During these last weeks parents have reported new levels of distress and meltdowns: “They were behaving in a way we hadn’t seen for years.” 

This impacts whole families – the child themselves, their parents and siblings.  

And it doesn’t necessarily end when the lockdown does. Returning to school after the disruption can be just as stressful. For some children and their families the distress is very much ongoing. 

“They were behaving in a way we hadn’t seen for years.”

In a pandemic, decisions often have to be made quickly to keep us safe and well. But how these decisions are applied and communicated can make all the difference for some families. 

The Association for Children with Disability is calling on the Victorian Government to:  

• ensure school closures are a last resort 
• create a consistent and transparent approach to school attendance during lockdown with specific consideration of students with disability 
• ensure that when lockdowns occur families know what support is available. 

All early childhood services and schools should provide all families with information about what is permitted during the restrictions, and about services such as child minding.  

This information should include the specific support that’s available for families with children with disability.  

And it should be available in Easy English and translated versions. 

These are simple and common-sense measures that can help children with disability and their families in any future lockdowns.  

So everyone can come through the hard times and snap back to normal. 

VCOSS strongly supports the vision and goals of the National Disability Insurance Scheme (NDIS) to provide people with disability greater choice and control over their support services, and to improve social and economic inclusion. However, as identified in our previous submissions regarding the NDIS[2] and in our issues paper on independent assessments, VCOSS and our members are concerned that people experiencing multiple and intersecting forms of disadvantage continue to be the least resourced to understand, engage with and benefit from the NDIS.

The Planning Policy proposes wide-ranging changes to the way individual NDIS funding plans are developed and implemented. While some of these changes may provide greater flexibility and choice for people with disability, other aspects have potential to deepen inequitable experiences and outcomes.

Our members’ experiences of NDIS planning suggests the quality of NDIS plans largely depends on participants’ capacity to learn about and understand the system and to self-advocate for their rights and needs. The proposal to place planning conversations with participants after mandatory independent assessments relegates and devalues the expertise of people with disability, their families and carers.

There is a real risk participants’ goals and aspirations will be bound by a pre-defined amount of funding, and that key context about people’s lives and circumstances will be missed. This may contribute to higher rates of reviews and, for people unable to access review processes, the loss of vital funding and support.

The introduction of flexible plan funding will be a welcome relief for participants who understand the NDIS well and feel confident in using their funding. During COVID-19, flexible funding measures have worked well to support many participants to navigate a challenging time. However, the loss of the current plan format, which allocates funding to specific categories, may be difficult for some participants who are familiar with and appreciate the structure it provides. Having a pool of funding, without support and guidance for how it can be used, may lead to lower plan utilisation, particularly among participants who already find it hard to understand and engage with the NDIS.

Our members believe any changes to the NDIS Planning Policy should ensure processes remain participant-led and focused on getting things right the first time. Ensuring NDIS participants have choice, control and agency early in the planning process is key to avoiding costly and stressful mistakes. Plan implementation support will become even more important with the proposed flexible and fixed planning structure. NDIS participants, their family and carers should be supported to understand and use their funding and to step into their power as consumers, to ensure the opportunities presented by plan flexibility are available to all.

Preparing for planning

Clear communications and meaningful engagement

Recommendations

• Implement the recommendations of the Tune Review and the Joint Standing Committee NDIS Planning inquiry to:
  • Provide additional funding to support people with disability to navigate the NDIS
  • Communicate in accessible formats
  • Develop and publish a clear diagram about the planning process
  • Release a detailed checklist of documents that participants can provide to support the development of their plan.
• Work in partnership with people with disability, advocates, allies and communities to co-design and deliver tailored communications and engagement approaches to connect with people with disability.
• Ensure all participants can receive accessible information about the NDIS and their plan.

As explored in our issues paper on independent assessments, learning about the NDIS continues to be difficult for the very people it is intended to support. Accessing the NDIS and experiencing good outcomes relies on the literacy, self-advocacy skills and confidence of participants and their support networks.

Participants who face barriers in learning about and accessing the NDIS, including people who do not have a support network, or the social and financial capital to navigate the Scheme, are at a disadvantage.

NDIS literacy is a pre-requisite for NDIS planning, and while communications and resources have improved over time, many people find the process daunting. The level of preparation and administration is high, because the consequences of a poor plan can affect every area of a participant’s life and future.

“Planning determines so many things about my life and the NDIS has absolute control. This can never not be terrifying for anybody who is severely disabled. If anything goes really wrong – like a gap in my plan – my worst nightmare is that I lose my remaining independence and in the worst case would have to move into a hospital or aged care facility… Because everything is SO high stakes, the emotional toll planning takes on a person is enormous…”
Ricky Buchanan[3]

People with disability may be supported by important people in their lives to prepare for and go through the NDIS planning process – by family, friends, doctors and health professionals, support services and advocates – but these formal and informal supports are not available for everyone. Goal-focused language and other NDIS terminology, unless clearly explained, can present a barrier to people getting the support they need.

As recommended in the Tune Review and echoed by the Joint Standing Committee on the NDIS, further investments should be made to support people to understand and engage with the NDIS. Changes to the NDIS planning process are likely to generate additional demand for information, advice and advocacy. A comprehensive approach to addressing these challenges could include:

Every step of access and planning processes should be responsive to the access needs of the participant. Plain and Easy English information, translated information and accessible resources should be available to every participant who needs it. Information should be provided in writing, by voice message, by text, by email, on the NDIS portal or via the post depending on a participant’s needs and preferences.

Defined and resourced roles and responsibilities

Recommendations

• In partnership with all stakeholders:
  • Clarify the roles, responsibilities and boundaries of Partners in the Community, advocacy organisations, service providers, community and mainstream organisations in relation to NDIS information, advice and pre-planning
  • Co-design and disseminate resources to ensure clear information is available to participants, families/carers, advocates and other stakeholders
  • Ensure pre-planning support is appropriately resourced to assist new participants to access the Scheme.
• Develop the NDIA Supported Decision Making Policy in consultation with people with disability, advocates and representative organisations and other key stakeholders.

Advocacy services and community organisations continue to deliver NDIS navigation and pre-planning support without, or with very little, targeted funding and training. Advocates report feeling overwhelmed by the demand from their local community for more information and support in relation to the NDIS. There are growing demands and increasing expectations that advocates can support participants who do not have informal supports, however this is not their role and nor are they are not adequately funded to undertake this role. 

VCOSS, in collaboration with the Future Social Service Institute, is in the final stages of completing a research project exploring the impact of the NDIS on Victorian disability advocacy and self advocacy organisations. The research has found disability advocacy and self advocacy organisations are regularly asked to support people to navigate the NDIS access, pre-planning, implementation and plan review stages, even when this work is the responsibility of other parties. This sustained, increased demand on disability advocacy has   not been met by reliable or sustainable funding – short-term grants and funding extensions have provided time-limited support, however our members report demand is still outstripping supply. The lack of stable funding also impedes organisations’ ability to retain staff and plan for the future.

NDIS service providers have also provided un-funded NDIS pre-planning during the transition to the NDIS.[4] Three-quarters of service providers surveyed say that helping people to understand and navigate the Scheme is taking them away from service provision.[5] Close to 80 per cent of service providers have received requests for services they cannot meet.[6]

NDIA Planners and Partners in the Community, including Local Area Coordinators and Early Childhood Partners, play a crucial role. They are the ‘face’ of the NDIS for many participants, families, carers and supporters, and the experiences people have with Partners and Planners shape and impact their expectations and outcomes.

While the role of Partners in the Community was intended to include community development, capacity building and market connection activities, the scope and focus of their role shifted during transition to the Scheme. The capacity of Partners in the Community has been largely absorbed by planning processes and plan implementation.[7] If action is not taken to revisit and resource the role of Partners in the Community, it may become challenging to introduce changes to their remit and broaden the focus beyond procedural aspects of the NDIS.[8]

There is no clear framework or dedicated resourcing to deliver supported decision-making for NDIS participants. The Access and Eligibility consultation paper notes the development of a Support for Decision Making Policy.[9] This Policy must be designed and implemented in collaboration with all key stakeholders and supported by appropriate, sustained funding.

We encourage the NDIA to collaborate with the Commonwealth, states and territories and all key stakeholders to ensure all roles in the NDIS eco-system are well defined and supported to deliver high-quality, responsive support.

Plan development

Protect and promote a participant-led approach to planning

Recommendations

• Value and prioritise the expertise and agency of people with disability in the planning process.
• Remove the additional, mandatory hurdle of independent assessments and provide funding for assessments as needed to support plan development.
• Support participants to understand the goal setting process and how goals translate to support.
• Work in partnership with the Commonwealth Government, states and territories through the National Disability Strategy to improve employment opportunities and income support measures for people with disability to enable social and economic inclusion.
• Provide further detail about how eligibility and funding for high-cost supports, such as Specialist Disability Accommodation, complex assistive technology and home modifications, will be determined through the planning process.
• Implement the recommendations of the Tune Review and the Joint Standing Committee NDIS Planning inquiry to ensure:
  • Participants and their supporters have sufficient time to communicate their goals and needs in planning meetings
  • Families and carers are aware of the kinds of supports the NDIS can fund to sustain and support their caring role
  • The planning process takes into account any expert advice developed for participants about their support needs
  • Draft plans are provided to participants before they are finalised.

Under the proposed Planning Policy, participants will face the additional step of completing an independent assessment after meeting the eligibility requirements. The results of this assessment will then inform the development of a draft plan and budget, before any planning conversations with participants.

As outlined in detail in our issues paper on independent assessments, VCOSS members and allies hold a range of concerns about the mandatory introduction of independent assessments, including:

• the departure from the vision and principles of the NDIS, and a return to the medical model of disability and a deficits-focused approach
• the relegation and restriction of participants’ goals and aspirations, which will be forced to fit within a pre-defined budget
• the risk that key contextual information about a participant’s life and circumstances will be missed and with no opportunity for inclusion in their plan
• continued equity issues during assessment and planning conversations for people who do not feel confident or supported to self-advocate for their needs
• the limited avenues to review, appeal or re-do an assessment.

Independent assessments have not been comprehensively tested as a reliable tool for informing plan budgets, yet through the proposed Planning Policy, they will have a considerable impact on participants’ plans. Our members fear the results of independent assessments will be used to generate an arbitrary amount of funding without genuine consideration of a participant’s individual goals, needs and circumstances.

The full context of someone’s life will only be revealed through thorough planning conversations. Two participants could present similarly ‘on paper’ but could be experiencing very different lives due to their living arrangements, work and income, family and social connections, culture and identity. An example shared by an advocate was where there may be two people with autism with similar function – one person who is more introverted and chooses to stay home and play video games most days, and one person who is extroverted and wants to socialise in their community every day. These two participants’ goals may not be well supported under the assessment-based funding model, as they will both receive the same funding regardless of their goals, interests and life choices.

Social and community access supports are often out of reach for participants on low or fixed incomes. Going for coffees, joining community activities and other social outings are unaffordable for many participants, regardless of their NDIS support to engage in these activities.

Under the proposed Planning Policy, funding for high-cost supports, such as Specialist Disability Accommodation, complex assistive technology and home modifications will be considered separately to draft budgets informed by independent assessments. It is not clear how eligibility and funding for these high-cost supports will be determined, and whether support will be provided for participants to seek additional assessments and reports. Home modifications support participants to maximise their independence and assist family members and carers in their caring role. Home modifications are often necessary due to the poor accessibility of most Australian homes. Current processes for seeking home modification funding require extensive discussions, home visits and expert advice from occupational therapists, architects, consultants and builders. If participants and their support network do not have these reports in place for their planning meeting, or face barriers in advocating for their need for home modifications, there is a risk participants will miss out.

There is a high likelihood the new approach to planning, that prioritises the results of independent assessments over conversations with participants, could generate additional administrative demands on the NDIA, Partners in the Community and the Administrative Appeals Tribunal through reviews and appeals; and an equally high risk that people who find the review and appeal process too challenging will go without the support they need or disengage from the Scheme.

Inconsistencies in planning decisions, including which supports are reasonable and necessary, feature strongly in the final report of the NDIS Joint Standing Committee into NDIS Planning[10] and in the Tune Review[11]. Even where participants have very similar medical reports and needs, participants can receive vastly different plans and funding allocations.[12]

The mandatory introduction of independent assessments will not fully or fairly address NDIS equity issues. Where assessments are needed, they should be paid for by the NDIA – however, participants should have choice and control in which provider they engage for the assessment.

There are a range of other measures the NDIA could implement to improve plan consistency and quality, including many recommendations outlined in the Tune Review and the NDIS Joint Standing Committee NDIS Planning inquiry. At the heart of these recommendations is respect for the rights, expertise and agency of people with disability. Common-sense system and process changes which would provide a better planning experience – including allowing sufficient time for meetings, considering the needs of families and carers, and listening to expert evidence – should be implemented without delay.

Build the skills, capacity and expertise of Planners and Partners in the Community

Recommendations

• Employ more people with disability as NDIA Planners and Local Area Coordinators.
• Implement the recommendations of the NDIS Joint Standing Committee NDIS Planning inquiry to:
  • Develop and implement detailed guidance for Planners and delegates about how to engage participants and their supporters during planning meetings
  • Publish information about the training provided to Planners and Partners in the Community
  • Give greater preference to candidates with experience or qualifications in allied health or disability-related areas when recruiting for Planners.
• Provide ongoing, comprehensive training for NDIA Planners and Partners in the Community to build their knowledge and capacity in:
  • Different disabilities and functional impacts
  • Applying evidence and assessments to the development of a plan.

Planning meetings work best when all parties – including Local Area Coordinators and Planners – do their homework. Our members continue to report participants being asked inappropriate or insensitive questions about the duration or impact of their disability, which makes it difficult to build trust and rapport to develop plan.

NDIA Planners and Partners in the Community should be supported to do their job well through comprehensive, ongoing training. Enhancing workforce capability in communicating with people with disability and their support network, understanding different disabilities and functional impacts, and interpreting reports and assessments would improve plan quality and consistency.

The NDIA and Partners in the Community should also recruit more people with lived experience of disability as across all roles. People with lived experience would be well-placed to build trust and rapport with participants through their NDIS journey.

Provide participants with plan length options and targeted support

Recommendations

• Clearly communicate plan length options to all participants.
• Ensure shorter duration plans and more frequent check-ins are easily available for people with episodic, fluctuating and deteriorating conditions.
• Implement processes to ensure the NDIA or Partners in the Community re-engage participants with inactive or underutilised plans.
• Provide proactive plan check-ins for participants impacted by emergencies and disasters.

The proposal to introduce longer plans of up to five years will provide a level of certainty for some participants. It will reduce the administrative burden of annual or bi-annual planning for participants whose needs remain largely the same.

However, people with episodic, fluctuating or deteriorating conditions may need a higher level of engagement and review with their plan. Regular check-ins can help to identify health, safety and quality issues earlier and act as a safeguarding mechanism. Participants with longer term plans who face barriers in understanding and implementing their plan may fall through the cracks without regular engagement. In addition, participants who have a negative experience with their independent assessment or planning process may disengage from the Scheme, or be reluctant to go through the process again when they are due for a check-in or plan reassessment.

The NDIA should ensure plan length and check-in options are clearly communicated so participants and their support network can choose the level of engagement that best meets their needs. Measures should also be in place to ensure participants with inactive plans or low plan utilisation are contacted by the NDIA or Partners in the Community to support their connection to and re-engagement with the Scheme. Emergencies and natural disasters can change participants’ needs and circumstances overnight. Bushfire and COVID-19 measures to proactively contact participants to discuss what they need should be embedded as part of the NDIA’s response to future emergencies and disasters.

Ensure funding structures meet participants’ needs

Recommendation

• Provide participants with the choice of a flexible and fixed budget format, or a budget with more structured categories.

Changes to provide greater flexibility in the use of NDIS funding by removing the 15 support categories has great potential to offer more choice and control for participants, their families and carers. The current funding structure can sometimes prevent participants from using their plan to purchase what they need, when they need it. The price guide is long and confusing. The names of support categories do not clearly reflect types of services, and it can be hard to work out where different supports sit and how much funding is available. The administrative burden and delays caused by seeking quotes and approvals, particularly for low-cost and low-risk supports, adds unnecessary stress and work for participants and the NDIA.

While the transition to a flexible and fixed budget format will work for many participants, some participants may want more structure in their plan to assist with budgeting, goal alignment and achievement. Having a large pool of funding may make it harder for some people to use their plan, and to know whether their plan will be sufficient for their needs. For some participants, naming the supports needed and the frequency required will be necessary to ensure budgets are sufficient. Knowing the recommended hourly rates for different types of support will also help participants to make informed choices about providers. If participants are not assisted to understand and implement their plan, they may spend their funding on only specific service types or they could run out of funding too quickly.

Similarly to participants’ options to choose how their funds are managed, participants should have a choice in how their funds are structured in their plan. The NDIA could conduct further engagement with stakeholders to determine how each option would work for participants, their families and carers, and providers.

Plan implementation

Clarify and resource plan implementation roles

Recommendations

• Provide NDIS participants with support and resources to understand and implement their flexible and fixed funding plan, aligned to their circumstances and needs.
• Clarify roles and responsibilities for plan implementation.
• Release the findings report for the Support Coordination discussion paper and outline the future direction of Support Coordination in relation to plan implementation.
• Ensure Partners in the Community are appropriately resourced and trained to deliver high-quality, ongoing plan implementation support.
• Explore options to expand the availability and reach of self advocacy and peer support groups, where people can share ideas, learn from and support each other.

Implementing a NDIS plan, by finding, purchasing and managing services, is challenging for many participants, their families and carers. After completing the NDIS planning process, 18 per cent of participants are unclear about what happens next.[13] Understanding the connection between pursuing goals and purchasing supports can be difficult for many.

VCOSS members report participants and their families often feel alone and confused after receiving their funding plan. People with disability experiencing disadvantage, isolation and financial hardship may find it even more difficult to use their funding plans without guidance and support. First Nations NDIS participants use less of their funding and often face challenges in implementing their plan due to a lack of local and culturally safe services.[14] The concept of ‘choice’ may also be unfamiliar for some culturally and linguistically diverse communities, who may need further support to explore what they need, understand what is available and make fully informed choices.[15]

As identified in a study of ‘hard to reach’ people, researchers reported:

“Oftentimes, it appeared that for many of our interviewees the notion of ‘choice and control’ over matters related to managing their disabilities was simply outside of their day-to-day considerations. Instead, many of our interviewees were concerned with basic needs such as of food, accommodation, safety, electricity bills, social inclusion, medicine and transport. In many instances, the idea of reaching for anything beyond day-to-day survival did not even occur to them.”[16]

This study also found that among people with NDIS plans who experienced disadvantage, many were not using their plans.[17]

Ensuring service connection roles are available and work well is central to a successful and fair transition to a market-based model of support. Research commissioned by VCOSS found that the roles and remit of Support Coordinators and the NDIA, Partners in the Community and disability advocates are not well understood or resourced in regard to plan implementation. This contributes to confusion, poor boundaries and attempts to handball tasks and responsibilities. For example:

• Partners in the Community are expected to undertake the dual roles of planning and coordination, however the pressure to bring participants into the Scheme has driven a higher focus on planning, potentially at the expense of plan implementation.[18] Support from Partners in the Community is not always provided, or enough, for many participants and families. Time pressures on these workforces and high turnover rates also hamper the delivery of quality plan implementation support.

• High quality Support Coordination offers invaluable support for participants, their families and carers to navigate a complex system and find and choose services based on their goals and needs. Support Coordination is especially critical for people with complex needs, who need intensive and ongoing support to navigate the NDIS. Despite the value of Support Coordination, only 41 per cent of NDIS participants receive funding for this assistance.[19]
  Even when participants are funded for Support Coordination, funded hours are not always sufficient to support participants’ needs.[20] In September 2020, a discussion paper on Support Coordination was released for comment by the NDIA and received over 400 submissions[21], however, the findings report has not yet been publicly released. VCOSS calls for this report to be published without further delay, and engagement with stakeholder to agree and prioritise areas identified for improvement.
  
• Self advocacy and peer support groups provide a space for participants to share how they have used their plan, talk about the supports they access and solve problems. They can play an important role in the NDIS eco-system alongside Partners in the Community and Support Coordinators. The NDIA should actively create the conditions for these groups to flourish through targeted and ongoing funding. Through the Information, Linkages and Capacity Building grants program, seed funding could be provided to establish, coordinate and facilitate peer support groups. Longer term funding is also crucial to support the sustainability of the self advocacy sector, which can be especially impacted and disrupted by short-term funding cycles and competitive grants processes.

NDIS participants will continue to need early and ongoing assistance to understand and use their plan and to step into their power as consumers. The need for plan implementation and capacity-building support may increase with the transition to flexible budgets, as participants adapt to the new structure and ways to use their funds.

Future iterations of the Planning Policy and related operational guidelines should provide clear guidance about the roles, responsibilities and resourcing for plan implementation support. Timely, quality plan implementation assistance and capacity-building supports should be available to support participants to build their consumer confidence and self-advocacy skills, and to confidently and independently exercise choice and control.

Support a diverse, thriving and sustainable market

Recommendations

• Support a sustainable, innovative and responsive market through market oversight and stewardship, fair pricing and strategic workforce development.
• Foster connections and collaboration between NDIS providers and community organisations to increase the coverage, capability, capacity and diversity of service offerings.
• Release and implement the National NDIS Workforce Plan.

Participants’ access to services, and choice over which services they engage, is a fundamental tenet of the NDIS. While there are over 15,000 registered NDIS providers across Australia[22], people with disability, their families and carers continue to face barriers in accessing services.

The NDIS market for services remains immature and thin in many regions across Victoria and Australia, particularly in rural, regional and high-growth areas. Even when participants have funding and are ready to purchase their services, the market may not be available or adequate to meet their needs. A lack of services or long waitlists are problematic for many NDIS participants who require timely support, including children with disability and developmental delay.

While the number of registered providers continues to grow, providers have mixed experiences of operating in the NDIS market. A survey by the NDIA found less than 60 per cent of NDIS providers are optimistic about the health of the NDIS market.[23]

Sector surveys show larger providers report faring better financially than smaller providers, who report breaking even or making a loss.[24] Close to 70 per cent of providers report receiving requests for services they were not able to meet, due to their capacity, service offering and funding availability.[25] Conversely, 42 per cent of registered providers were inactive over the past quarter.[26]

In tandem with work to improve planning experiences, the NDIA should take a more active role in market oversight and stewardship to ensure the supply of services adequately meets demand – including which services are offered, where they are delivered, and protecting their quality. Partnerships between NDIS providers and community organisations could also be supported and strengthened, to increase the diversity, capacity and cultural competency of services and staff.

NDIS pricing should be reviewed to reflect the true costs of service delivery, promote access to best-practice, evidence-based support and improve provider sustainability.

The National NDIS Workforce Plan should also be finalised, released and actioned to build a skilled workforce to meet current and future demand.

Plan reviews

Provide fair and transparent avenues to review or appeal decisions

Recommendations

• Improve the quality of planning experiences to reduce the need for reviews and appeals.
• Ensure plan review and appeal processes respect and uphold the rights of people with disability to access justice.
• Provide clear, accessible information about review and appeal processes, including timelines and support services.
• Increase funding for independent disability advocacy and legal assistance to enable participants to exercise (and be supported to exercise) their rights.
• Ensure check-ins and plan variations are flexible to participants’ needs and circumstances, and responsive to plan utilisation triggers.
• Implement the recommendations of the NDIS Joint Standing Committee NDIS Planning inquiry to:
  • Reduce the time it takes to resolve Administrative Appeals Tribunal (AAT) appeals
  • Review the amount of funding provided to advocacy organisations through the NDIS Appeals program and ensure organisations are sufficiently funded to support participants through AAT processes
  • Develop and publish de-identified summaries of key themes arising from AAT settlement outcomes.

Making changes to NDIS plans has been a source of stress, frustration and delays for many participants since the start of the Scheme. Current NDIS review and appeal processes are inaccessible and overly bureaucratic. Making even a minor change to an NDIS plan takes considerable effort and commitment from participants and their support network.

Administrative Appeal Tribunal (AAT) appeals for access and planning issues increased by almost 50 per cent over the past year.[27] If a review is escalated to the AAT, participants find themselves up against a team of lawyers engaged by the NDIA, often without legal representation themselves.

Demand for independent disability advocacy and legal assistance to pursue an appeal also continues to increase – demand that is not matched by increased resourcing.

The best way to reduce the need for plan changes is to deliver high quality, participant-led planning experiences from the very beginning. Ensuring participants have fair opportunity to share their goals, interests and needs through the planning process respects their expertise and improves the quality of plans.

Check-ins, plan variations, reassessments, reviews and appeals must be designed to respect the rights of people with disability to access justice. As described in the principles of the NDIS Act 2013, “People with disability have the same right as other members of Australian society to pursue any grievance”.

The proposed introduction of check-ins and plan variations will go some way to alleviating bottlenecks in current review processes. To provide confidence in this new process, specific timeframes for plan variations should be included in the NDIS Participant Guarantee and the steps for seeking a plan variation should be clearly communicated to all participants.

Participants should have the opportunity to request check-ins and plan variations as needed and when their circumstances change. Triggers should be in place to initiate a check-in where plans are underspent or on track for being overspent.

There will continue to be reviews that require referral to the AAT. Participants should be supported to engage in this process on equal footing with the NDIA through free and timely access to experienced appeals advocates and legal representation.

_________________________________________________________________________

This submission was prepared by Rhiannon Wapling and authorised by VCOSS CEO Emma King. For enquiries please contact Deborah Fewster at deborah.fewster@vcoss.org.au.

A fully accessible version is available online at vcoss.org.au/policy

[1] VCOSS, Empowered Lives, accessed 8 February 2021.

[2] VCOSS, Building choice, control and confidence: Submission to Support Coordination discussion paper, September 2020; Delivering on the promise – a better and fairer NDIS: Submission to the Review of the NDIS Act and the new NDIS Participant Service Guarantee, October 2019; Active market stewardship for the NDIS: Submission to the NDIS Thin Markets Project, July 2019; Strengthening the NDIS: Submission to NDIS Joint Standing Committee inquiry into market readiness, March 2018.

[3] Senate Joint Standing Committee on the NDIS, NDIS Planning Final Report, December 2020, p.3.

[4] National Disability Services, State of the Disability Sector Report 2019, November 2019, p.9

[5] G Carey, M Weier, E Malbon, G Duff and H Dickinson, How is the Disability sector faring? A report from National Disability Services Annual Market Survey, CSI: Sydney, 2020, p.17.

[6] National Disability Services, State of the Disability Sector Report 2020, December 2020, p.19.

[7] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.41; Mavromaras et. al., Evaluation of the NDIS: Final report, National Institute of Labour Studies, February 2018, p.83; E Malbon and G Carey, ‘Market stewardship of quasi-markets by street level bureaucrats: The role of local area coordinators in the Australian personalisation system’, Soc Policy Adm. 2020;1–16, April 2020.

[8] E Malbon and G Carey, ‘Market stewardship of quasi-markets by street level bureaucrats: The role of local area coordinators in the Australian personalisation system’, Soc Policy Adm. 2020;1–16, April 2020.

[9] NDIA, Consultation paper: Access and Eligibility Policy with independent assessments, November 2020, p.19.

[10] Senate Joint Standing Committee on the NDIS, NDIS Planning Final Report, December 2020, p.50-53.

[11] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.64-65.

[12] Ibid.

[13] NDIA, NDIA, NDIS Quarterly Report to disability ministers Q2 2020-2021, December 2020, p.36.

[14] NDIA, Aboriginal and Torres Strait Islander participants, 30 June 2019, p.43; S Avery, Indigenous people with disability have a double disadvantage and the NDIS can’t handle that, The Conversation, 8 October 2018, accessed 22 January 2021.

[14] Federation of Ethnic Communities’ Councils of Australia et. al., Barriers and exclusions: The support needs of of newly arrived refugees with a disability, February 2019, p.21-22.

[15] Ibid.

[16] C Cortese, F Truscott, M Nikidehaghani & S Chapple, Hard-to-reach: the NDIS, disability, and socio-economic disadvantage, Disability & Society, June 2020, p.3.

[17] Ibid.

[18] D Tune, Review of the NDIS Act: Removing red tape and implementing the NDIS Participant Service Guarantee, December 2019, p.41 and p.119.

[19] NDIA, NDIA, NDIS Quarterly Report to disability ministers Q2 2020-2021, December 2020, p.134.

[20] VCOSS, Building choice, control and confidence: VCOSS submission to Support Coordination Discussion Paper, September 2020.

[21] NDIA, NDIS Provider Newsletter, November 2020, accessed 18 January 2021

[22] NDIA, NDIA, NDIS Quarterly Report to disability ministers Q2 2020-2021, December 2020, p.59.

[23] NDIA, Provider sentiment and satisfaction survey: Fourth national collection, November 2020, p.15.

[24] National Disability Services, State of the Sector Report 2020, December 2020, p.12-13.

[25] Ibid., p.19.

[26] NDIA, NDIA, NDIS Quarterly Report to disability ministers Q2 2020-2021, December 2020, p.59.

[27] Administrative Appeals Tribunal, Annual Report 2019–20, p.37.

The Victorian Council of Social Service (VCOSS) supports over 40 Victorian disability advocacy organisations to undertake collaborative systemic advocacy through the Empowered Lives network. VCOSS and many of our allies fear the fabric of the NDIS is being eroded and the original vision for the Scheme is being lost. This Issues Paper is specifically prompted by concerns that the NDIA’s proposed model of mandatory independent assessments will reinforce the growing inequalities in the Scheme. Instead of improving access and reducing out-of-pocket expenses, independent assessments will present another hurdle for people with disability. This hurdle will be higher and harder for people who experience multiple and intersecting forms of disadvantage, and will add another layer of stress, complexity and anguish for people with disability seeking support.

The NDIS is often described as the largest social policy reform in a generation. It is right that, as the NDIS matures, we continue to identify and address implementation challenges to ensure the NDIS delivers on its promise and fulfils its goals. However, it is our position that the NDIA’s proposal to introduce mandatory independent assessments is the wrong solution to a complex implementation challenge. This Issues Paper sets out our key concerns and proposed alternative solutions.

The NDIS Participant Service Charter commits the NDIA to include people with disability and the community in developing and testing processes, and to listen to feedback to find better ways of doing things. Participants, families, carers and advocates should be engaged as equal partners with the NDIA to identify Scheme challenges and co-design fair and practical solutions. Our network – along with others – stands ready to assist in this vital work.

Issue: The proposed Access and Eligibility Policy will perpetuate barriers to access

Our concerns at a glance

The NDIA’s proposed Access and Eligibility Policy does not recognise or address the preliminary barriers that prevent access in the first place – low awareness, complex information and a lack of support.

Context

Learning about and accessing the NDIS continues to be difficult for the very people it is intended to support. Access to the NDIS relies heavily on an individuals’ agency, supports, social and financial capital. Being literate, including digitally literate; knowing about and understanding the NDIS; having the skills and confidence to self-advocate, identify support needs and goals, and exercise choice and control; and having a strong support network are all pre-requisites to access the NDIS.

The NDIS is a complex support system and, as the Scheme has evolved, a sea of key terms, acronyms and ‘magic words’ have flourished.

“You have to have the special code words to go through their programme, you’ve got to say it’s – oh, what is it they told me? Someone told me ‘psychosocial disability’ or something… so you can’t even say what it is as a mental illness, you have to know these special code words, which makes it hard for anyone to get through because, if you don’t know the special code words, you can’t even get through the front door, so to speak.”[1]

The prevalence of cheat sheets, blogs and resources that aim to explain the NDIS and NDIS-related phrases demonstrates just how murky the messages have become. The information overload, and conversely the absence of information, presents an overwhelming barrier for people commencing the access process and navigating the participant pathway. Gathering evidence and completing the Access Request and Supporting Evidence Forms is time and resource intensive. The process is inaccessible and overwhelming for many people with disability and their support network, and many people need dedicated support for this process.

People who do not have easy access to identification documents, and people who do not have an ongoing relationship with a GP, allied health professional or specialist, are likely to face difficulties in completing their access request. Expenses to gain reports, to travel to specialists and find private providers – especially where there are long wait lists in the public system – are exorbitant and out of reach for many participants and families. These challenges are particularly pronounced for people experiencing intersectional disadvantage and isolation, who may contend with additional social, financial and cultural barriers.

First Nations people with disability

While prevalence of disability is high among First Nations people, participation in the NDIS remains lower than projected by the NDIA.[2] Data from the NDIA shows a larger proportion of First Nations people with disability have their access requests cancelled due to their form not being returned, or because the NDIA was unable to contact them.[3] After completing the access process, over 40 per cent of First Nations NDIS participants do not know what happens next.[4]

Culturally and linguistically diverse people with disability

People with disability from culturally and linguistically diverse backgrounds are significantly less engaged with the NDIS than anticipated across every age group.[5] Migrants and refugees with disability, their families and supporters face challenges due to language and cultural barriers, a lack of information and resources, and problems applying for and receiving services.[6] Cultural beliefs, stigma and shame surrounding disability in some cultures can also make people and families fearful or wary of seeking support.[7]

Research by the Ethnic Communities’ Council of Victoria found almost 80 per cent of research participants reported they and their family did not have good knowledge about disability supports and the NDIS, and 90 per cent believe there is not enough information and help available.[8] A lack of supporting evidence is the leading cause of cancelled access requests for culturally and linguistically diverse NDIS applicants.[9]

People with psychosocial disability

One of the first barriers to accessing the NDIS for people with psychosocial disability is that many do not identify as having a disability or are wary of stigma. Psychosocial disability can be episodic and fluctuating. On a good day, symptoms could be easily masked or misunderstood; on a bad day, intensive support from known and trusted specialists is vital. Over one-third of people with psychosocial disability who apply for the NDIS have their application rejected.[10]

Young people with disability

Young people with disability often find it hard to understand and engage with the NDIS and to have their voice heard. The forms and resources are complicated, and sometimes the supporters and professionals young people turn to and trust are not confident in their own knowledge of the NDIS. Young people with disability who are not living with their family or carers, or who do not have stable housing, face additional challenges collecting paperwork and evidence to support their application.

People experiencing poverty, isolation and disadvantage

People experiencing poverty, isolation, socio-economic disadvantage and homelessness find it hard to learn about and access the NDIS. A study into the experiences of people facing socio-economic disadvantage who were likely to be eligible for the NDIS found 72 per cent of interviewees were either unaware of, or had distorted views about, the purpose and the eligibility criteria of the NDIS.[11] A lack of assistance, uncertainty about eligibility criteria, discouragement from or limited access to medical professionals and social isolation all present significant barriers for people seeking to apply for the NDIS.[12] People without stable accommodation and people experiencing financial hardship are not able to prioritise the NDIS access process when their focus is on their basic and immediate needs.

People with complex and co-existing needs

People living with episodic or fluctuating disabilities, or co-existing health issues, often find it hard to prove the ongoing and permanent nature of their disability and to identify the right service system for their needs. The interface with the health system, and battles over which system is responsible for what supports, is an ongoing concern for people with progressive diseases that impact their daily functioning.

People experiencing drug and alcohol issues, including many who are highly likely to be eligible for the NDIS, and frontline clinicians in this sector often find NDIS processes overwhelming and time-intensive. There are no dedicated groups or resources to support people and clinicians to understand and navigate the NDIS, so accessing the Scheme often comes down to capacity, commitment, connections and luck. People with co-existing substance dependence and disability, from falls, accidents or acquired brain injury, find the wall of engagement with the NDIS too hard and high to climb, meaning many miss out on the opportunities available through the NDIS.

Rural, regional and remote communities

People with disability living in rural and regional areas often have reduced access to health professionals due to a lack of local services, long waiting lists, lengthy travel times and transport issues. These delays and service gaps mean it can often take far longer for people with disability in rural and regional communities to collect the required evidence for their NDIS access request.

Issue: A stark shift from the principles and vision of the NDIS

Our concerns at a glance

The introduction of mandatory independent assessments, and the ways in which assessments will be used, is a worrying departure from the vision and principles of the NDIS.

Context

The NDIS was promised as a game-changer for people with disability and all Australians – a once-in-a generation opportunity to replace inefficient, stretched and rationed state-based systems with a fair, timely and reliable national system Our members fear the introduction of mandatory independent assessments will take away choice, control and independence that was intentionally placed at the heart of the Scheme.

Instead of taking a person-centred approach, and ensuring participants’ voices, dignity and agency are prioritised, independent assessments place power and influence in the hands of assessors who may not have skills and expertise in specific disabilities, functional impacts and fluctuating needs. The potential return to deficit-focused language and a renewed emphasis on the medical model of disability is a big step backwards.

“We want a scheme that provides reasonable and necessary supports for people with disability. Support so they can live an ordinary life and enjoy the same kinds of opportunities as other Australians. A fair go. No more and no less.”[13]

We urge the NDIA to not lose sight of the original vision of the NDIS and to build on the strengths of the Scheme by listening to the voices and expertise of people with disability, advocates, organisations and the wider community.

Issue: A cherry-picked solution for a complex, unsolved problem

Our concerns at a glance

The selective interpretation and use of the Productivity Commission inquiry and Tune Review reports to introduce a significant change to the Scheme is deeply concerning for many people with disability, families, carers, advocates and allies. The disparity between what was recommended and what is being proposed has contributed to confusion, concern and lack of confidence in this policy change across the disability community.

Context

The concept of independent assessments for the NDIS was initially proposed in the Productivity Commission’s Disability Care and Support inquiry in 2011. The inquiry report proposed a system that would deliver individual funding “determined by the independent assessment of need, rather than the present arbitrarily rationed amount.”[14]

The Productivity Commission suggested independent assessments, conducted by allied health professionals approved or appointed by the NDIA, could be made using a ‘toolbox’ of assessment tools. The results of assessments would then inform eligibility for the Scheme and the development of an individual plan that considers support needs and the role of informal supports. Independent assessments were not included in the design of the Scheme roll-out, in part due to the absence of the right tools.

The 2019 Tune Review, in its commentary on independent assessments, noted potential benefits including a decreased financial burden for participants; however, it also highlighted a range of considerations for the implementation of any assessment changes.

The correlation between the recommendations of the Productivity Commission and the Tune Review, and the NDIA’s proposed model for introducing mandatory independent assessments, is limited. Caveats and commentary in these reports about implementation considerations are not recognised or represented in the proposed model for independent assessments.

For example, the NDIA’s proposed approach fails to reflect the following advice from the Productivity Commission and Tune Review that:

• where possible (and with the individual’s permission), the Scheme should make use of existing medical reports[15]
• assessments should be portable across the system — subject to protection of privacy — so people do not have to repeat information for different providers or government agencies[16]
• assessments and re-assessments should occur when people join the Scheme, and again at key life stages or when circumstances change[17]
• where an informal carer provides substantial care, they should receive their own assessment if they wish[18]
• the power to require prospective participants or participants to undertake an assessment be discretionary[19]
• at least in the short term, the NDIA should not implement a closed or deliberatively limited panel of providers to undertake functional capacity assessments[20]
• key protections would need to be embedded into the approach, in particular:
  • the right to choose which NDIA-approved provider to conduct the assessment
  • the right to challenge the results of an independent assessment
  • the need for uniform accreditation requirements, designed and implemented jointly by the NDIA and disability representative organisations
  • the availability of clear, accessible publicly available information about independent assessments.[21]

Issue: Limited evidence base from pilots or community engagement

Our concerns at a glance

The narrow nature of the pilots to date and the absence of detailed evaluation does not provide sufficient evidence to support the sweeping introduction independent assessments.

Context

The first pilot of independent assessments was deployed in nine areas across New South Wales by one service provider, primarily to existing participants across three disability groups. 513 people voluntarily participated in the pilot – of this cohort, 65 per cent were aged 7-14 and 71 per cent were male.[22] Just 7 per cent were from a culturally and linguistically diverse background, and 1 per cent were First Nations people.[23]

A survey completed by 145 participants found a 91 per cent satisfaction rate with the experience[24]; however, it is not clear whether survey participants are representative of the cohort. Additionally, the survey was completed by only 35 NDIS participants themselves with the remaining responses from family members or carers.[25]

A second pilot, which was delayed due to COVID-19, recently recommenced with a view to engaging 4000 existing participants.[26] Senate Estimates figures show that as of 11 November 2020, just 215 participants accepted the invitation to participate in the pilot, 185 declined and 4496 have not yet responded.[27]

NDIS participants and the broader disability community feel they have not been listened to or provided with fair and authentic opportunities to share their thoughts and co-design solutions. The lack of information and limited transparency about proposed NDIS reforms continues to fuel fear and anxiety.

Issue: Goals and aspirations are relegated and restricted

Our concerns at a glance

The NDIA’s proposed Planning Policy flips the current participant-led, goal-oriented process and places participant planning conversations after an independent assessment and after the development of a draft plan and draft budget.[28]

Context

Goals are highly individual, personal and empowering. From moving out of home to getting a job or making new friends, the nature and scope of goals varies for every NDIS participant. Nurturing aspirations, expanding expectations and establishing a path to goal achievement takes time, commitment, systemic change and targeted support.

Placing goal conversations after the development of a draft plan and budget, informed by a brief independent assessment, will limit the pursuit of goals and see participants’ aspirations restricted by funding decisions. This change in process means people will have to fit their goals, needs and ambitions within a defined budget, and potentially present a strong argument for why they need more funding and support. There are concerns this process will not facilitate full and fair consideration of a participant’s personal circumstances. Functional capacity is not the only reason a participant may need support. Two people with similar functional needs ‘on paper could be living vastly different lives and it is not clear how social, environmental and cultural factors will be comprehensively captured by the assessment process and the subsequent plan.

In its commentary on assessments, the Productivity Commission’s 2011 report noted, “while the assessment process would primarily be about assessing an individual’s needs, it should not disregard their aspirations.”[29] Devaluing and demoting goals in the planning process reduces participants’ choice, control and agency, and does not align to the objects and principles of the NDIS Act 2013. Any assessments, where necessary, would be better placed after conversations with participants. The NDIA should invest in Planner training and capacity to have respectful, strengths-based conversations with participants about what is important to them and practical ways to pursue their goals.

Issue: Emotional impact for participants, families and carers

Our concerns at a glance

Independent assessments perpetuate – rather than resolve – participants’ concerns about Scheme access. They present a new hurdle for participants to pass – one that requires people to share personal details with a stranger who has the power to make life-altering decisions. This process creates additional and unnecessary stress and anxiety for people with disability seeking support and has the potential to be traumatic and confronting.

Context

As part of the Tune Review, people with disability, families, carers and advocates raised their concerns about access to the NDIS. People shared their personal difficulties and frustrations about navigating the bureaucracy, finding information, getting appropriate assistance, and of the evidentiary burden of accessing the NDIS.

NDIS participants are rightly afraid about independent assessments. The concept of independent assessments as proposed creates a situation where participants need to re-tell their story to another stranger and prove that it is true. The power of assessors to influence the outcomes of their NDIS access request and plan budget based a snapshot in time is significant.

Participants may feel pressure both to perform for the assessor or to illustrate what their worst day looks like to ensure their needs are understood and captured. Children who are being assessed by people they are unfamiliar with may respond or behave differently than they would with a person they know and trust. Likewise, there is a risk some participants with complex needs could mask or downplay their needs, or that their responses to questions may not be fully understood. Participants who have had had poor experiences with other government assessment processes, such as the Disability Support Pension job capacity assessment, may be especially anxious about undertaking an independent assessment. People who may have faced additional barriers to finding out about and applying for the NDIS in the first instance may be confused about and traumatised by having to re-tell their story.

Participants are able to have a support person with them for their assessment, and it is important his person knows them well and is able to contribute to the assessment where needed; however, not everyone has someone in their life who could fulfil this role.

Issue: Continued equity issues regarding evidence costs

Our concerns at a glance

The model for introducing independent assessments does not achieve the objective of reducing costs to access the Scheme.

Context

One of the key messages promoted to support the introduction of independent assessments is the need to deliver fairness and equity, particularly for people from low-income households or facing additional barriers to accessing the NDIS. The NDIA estimates Australians with disability are currently spending between $130 million and $170 million on assessments associated with accessing the NDIS.[30]

Visits to GPs and medical specialists can be expensive and wait lists are often lengthy, particularly in regional and rural communities. The cost of a private autism assessments can easily run into thousands of dollars. While some people may seek private services at their own cost, or travel long distances to see a specialist, this is not an option for participants and families on fixed or low incomes, and those without reliable support and transport.

The NDIA’s independent assessment framework itself states:

“At present, an individual is required to gather evidence of their functional capacity, prior to Scheme access, either through publicly funded services or through the private health sector. For many, obtaining this information through the private health sector is financially prohibitive and waiting lists in the public sector can be extensive. There may also be gap fees even with Medicare funded services which are prohibitive for some people. In addition, other cultural and social barriers may make access to the Scheme problematic for some. Changes to the assessment process should seek to level the playing field so that financial, cultural, social, education and literacy factors do not contribute to delays or barriers to accessing the Scheme.”[31]

Under the proposed access process, independent assessments are available after a participant has met the NDIS eligibility requirements[32] – to meet eligibility, prospective participants will still need to provide evidence of their disability[33]. This barrier is not removed or reduced for people experiencing disadvantage, marginalisation and hardship, and the change in policy will not improve the equity of experiences and outcomes.

The anticipated costs to introduce independent assessments, or alternative options, have not been made publicly available. This is unusual given the NDIA’s focus on Scheme sustainability.

Cost modelling for a range of assessment options and measures to increase equity (see page 24) should be conducted to ensure the most efficient, effective and fair option is selected.

Issue: Communication and advocacy barriers

Our concerns at a glance

The NDIS ‘assumes empowerment’. While we applaud a strengths-based approach, an assumption of empowerment fails to consider the long-tail effects of entrenched systemic discrimination of people with disability and required mitigation.

Context

The NDIS requires participants to self-advocate to have their needs met. This is predicated on an assumption that all participants have the skills, knowledge, confidence and opportunity to do so. NDIS participants are not one homogenous group. There is a diversity of lived experience.

This assumption about self-advocacy capacity can unwittingly hinder the participation of diverse communities who may face barriers in accessing and understanding the system and in articulating and advocating for their goals and needs[34], while people who feel confident and empowered to articulate their needs are likely to receive greater support from the Scheme.

The assessment tools, which collect evidence through interviews, questionnaires and observation, are likely to be more accessible and beneficial for people who can confidently self-advocate for their rights, interests and needs. People who speak English as a second language, who communicate with the support of an interpreter and people with complex communication needs may find it harder to participate and be heard in these assessment processes. People with psychosocial disability may also find this process challenging due to the impact of their condition. For example, people who experience auditory hallucinations or delusions of grandeur, or find it hard to trust and communicate with new people, may have difficulty expressing their needs during assessments.

Participants will be able to have a support person with them during their assessment, and under the proposed policy, the NDIA will help to find a support person for people who request one. However, it is not clear who the NDIA anticipates will undertake this role. Any resulting increase in demand for individual advocacy, which is already under considerable pressure, will need to be supported by appropriate, timely and ongoing funding.

Issue: Inconsistencies in the use and interpretation of assessments

Our concerns at a glance

Despite the focus of independent assessments being on delivering consistency, the window for varied interpretation of assessments remains wide open.

Context

Under the current and proposed models, people with disability must provide evidence to support their access request and the planning process. An ongoing and outstanding issue with supporting evidence that is not addressed by the proposed Access and Eligibility Policy is the variable interpretation of reports by NDIA delegates, Planners and Partners in the Community.

Feedback provided to the Tune Review indicated some Planners are either not fully considering the reports participants provide, or are not sufficiently taking into account the recommendations of experts.[35]

These findings were echoed in the NDIS Joint Standing Committee’s NDIS Planning Inquiry, which heard Planners may be ignoring or changing expert recommendations provided by allied health professionals about participants’ personal needs, recommending cheaper supports or asking participants to choose between supports.[36]

Under the proposed planning process, NDIS delegates will develop a budget based on the outcomes of an independent assessment[37], but it is not clear if or how delegates will be trained in understanding and interpreting assessments for this purpose. Our members hold concerns that assessment results will be used to generate an arbitrary amount of plan funding.

Issue: Independence of assessors

Our concerns at a glance

Assessors contracted by the NDIA will face unavoidable conflicts of interest and challenges to their genuine ‘independence’.

Context

The NDIA has already progressed work to establish a panel of assessors through a tender process. The tender was opened in March 2020[38], before the pilot of independent assessments was completed, before an evaluation of the pilot was completed and made publicly available, and without any targeted communication to participants, their families, carers and supporters.

In 2011, the Productivity Commission recommended assessors be drawn from an approved pool of allied health professionals, who do not have an existing connection to the person being assessed, to reduce the potential for ‘sympathy’ bias.[39] However, the more recent Tune Review in 2019, informed by the reality of the Scheme roll out and participant experiences, recommended the NDIA should not implement a closed or deliberatively limited panel of providers to undertake functional capacity assessments, at least in the short term.[40] The Tune Review notes risks related to the introduction of a closed panel, including disengagement and the potential for disproportionate impact for First Nations people with disability, culturally and linguistically diverse people with disability and people with psychosocial disability.[41]

In choosing a panel approach, whereby assessors are engaged and paid by the NDIA, conflicts of interest are not removed; they are displaced. Assessors contracted by the NDIA will face unavoidable conflicts of interest and challenges to their genuine ‘independence’ – delivering the desired outcomes to the structures, timeframes and priorities of the NDIA will be vital to assessors’ ongoing employment. The NDIA’s 2019-2020 Annual Report and Corporate Plan 2019–2023 pay considerable attention to delivering a financially sustainable Scheme and managing cost drivers. These aspirations may impact the work and decision-making of independent assessors, who hold considerable power in relation to the supports participants receive.

Issue: Quality and expertise of assessors and assessments

Our concerns at a glance

Under the proposed model to introduce independent assessments, the expertise of health professionals and the value of existing clinical relationships is diminished.

Context

Through the transition to the NDIS, participants and health professionals have navigated significant confusion about the evidence required by the Scheme. The Tune Review heard:

“…that it is unclear what evidence is needed to support decisions about a person’s functional capacity, and there is no actively promoted or standard format for prospective participants, participants and their health professionals in which to provide that evidence. This has resulted in people submitting evidence that is not always fit for purpose, varying in quality and consistency and requiring back-and-forth interaction to obtain what is needed for the NDIA to be satisfied in discharging its functions under the NDIS Act.”[42]

Reports and other supporting evidence are often rejected or dismissed by the NDIA if they do not use particular language or ‘magic words’. This remains the case even where the evidence provided is substantial, carefully considered and completed by experienced and qualified professionals with deep understanding and rapport with participants.

The core problem has been a lack of clarity about evidence requirements. This has given rise to frustration, expense and wasted time for people with disability and health professionals alike. However, the NDIA’s proposed model for mandatory independent assessments is not the right solution to this problem.

GPs, specialists and allied health professionals play an important role in the lives of many people with disability. Over time, through building trust, rapport and understanding, health professionals get to know people with disability well.

The assessments made by independent assessors, who do not have deep knowledge of participants, will take precedence in determining access to the Scheme and the provision of funding. It is not clear how, and to what extent, existing evidence from other health professionals will influence access and planning processes and decisions.

People with disability have a diverse range of experiences and histories with medical and health professionals. Forcing people with disability to ‘prove’ their disability to a stranger in a matter of hours is likely to be traumatic, intrusive and ineffective. The time-limited nature of the proposed independent assessments, which can take place for as little as 20 minutes, is highly concerning for many people with disability and their supporters. People who have difficulties in speaking up about their rights and needs, for a range of social and cultural reasons, are likely to be more disempowered by this approach.

Independent assessments will not have the scope to capture how people function in different settings, times and days. For example, one-on-one interactions may be manageable for a person who is Deaf or hard of hearing to communicate without support, however, group situations or other environments may be more difficult. Likewise, a participant’s needs in work, home or social settings is likely to vary.

A recent case in the Administrative Appeals Tribunal (AAT) highlights the disparities in the depth and quality of assessments by known, trusted health professionals versus an unknown independent assessor. The tribunal found the observations made by the existing treating health professional across 50 to 60 occasions in a variety of environments to be more reliable and accurate than a single, three-hour assessment in one environment.[43]

Issue: Workforce considerations

Our concerns at a glance

The availability of allied health services and the strength of the allied health market, particularly in regional and remote areas, was already a chronic issue prior to the introduction of the NDIS.[44] There is currently a shortage of allied health professionals working in the disability care sector[45], and providers find allied health roles the most difficult to recruit and retain[46]. Placing a new, additional demand on the stretched allied health sector to deliver independent assessments may further constrict access to treatment and care.

Context

Under current NDIS processes, where participants may be required to seek an additional assessment at the NDIA’s request and cost, workforce challenges are contributing to significant delays. In some instances when alternative, local therapists cannot be found, allied health professionals from other regions travel long distances to the participant, or the participant’s initial treating health professional is eventually engaged for the assessment.

Allied health professionals with past negative experiences of completing NDIS assessments, where their professionalism is questioned or advice ignored, may be even more reluctant to participate in this new process.

VCOSS members believe the implementation of independent assessments will be unachievable, or detrimental to the market, unless workforce development and retention strategies are developed. Recruiting trained and experienced assessors will be a difficult and long process, particularly in rural and remote areas, and the need to create a large, additional workforce quickly raises concerns about the experience and expertise of assessors.

Issue: Right to pursue grievances and seek exemptions

Our concerns at a glance

Under the NDIA’s proposed approach, the findings of an independent assessment can only be challenged in limited circumstances.

Context

The NDIA consultation paper states:

“Disagreeing with the results of an otherwise sound and robust independent assessment is not sufficient for the NDIA to fund another assessment. Applicants can only seek a second assessment where the assessment was not consistent with the independent assessment framework, or if the applicant has had a significant change to their functional capacity or circumstances.”[47]

Placing tight parameters on participants’ rights to request a review of an independent assessment denies access to fairness and justice. Under the principles of the NDIS Act 2013, people with disability have the right to pursue grievances, to determine their best interests, exercise choice and control, and engage as equal partners in decisions that affect their lives to the full extent of their capacity.[48]

The process for determining inconsistencies with the independent assessment framework, and the supports available for current and prospective participants to seek a second assessment, are yet to be defined or publicly released.

As with NDIS review and appeal processes, many people with disability, families and carers will need support to pursue these options. Demand for individual disability advocacy support is already under pressure across Australia and would need a significant boost to meet this need.

Exemptions from independent assessments are available in exceptional circumstances, but these circumstances are not defined.[49]

VCOSS members are concerned that the participants who are most likely to need an exemption may face greater barriers in seeking one, because they may not have the resources, capacity and confidence to pursue this avenue. The proposed policy also states that requests for exemptions that are rejected cannot be appealed.[50]

These policy provisions run the risk of deepening disadvantage and accelerating Scheme exits for people who do not know how to interact with the access and assessment processes.

Solutions: A reasonable and necessary approach to evidence requirements

VCOSS members believe the hasty introduction of independent assessments is the wrong answer to a complex and multi-faceted problem. NDIS participants and the communities they live in are diverse. Applying a one-size-fits-all approach to gathering evidence is unlikely to promote equity. Ensuring all participants have access to assessments is one means to address access and planning inconsistencies, but it is not a silver bullet.

The NDIA should work in partnership with people with disability, their families and carers, advocates and allies to carefully and transparently explore all options for improving the NDIS.

Adopt a human rights based approach to co-design a solution

Under the UN Convention on the Rights of Persons with Disabilities (CRPD), Australia is obliged to closely consult and actively involve people with disability in decisions that affect their lives and rights, particularly the development and implementation of legislation and policies.[51]

People with disability, their families and carers, advocates and allies know more than anyone what it is like to navigate the NDIS and are well placed to share their expertise and ideas for change.

To respect and abide by the CRPD, the objects and principles of the NDIS Act 2013, and uphold commitments made under the NDIA Participant Service Charter, the NDIA must undertake open-minded, meaningful and substantial stakeholder engagement and consultation to co-design practical, fair and impactful solutions to key Scheme challenges.

Recent research into the disability assessment practices of 34 European countries and compatibility with the CRPD identifies key features of best-practice, rights-based assessment processes and policies.[52]

Analysis by Waddington and Priestly suggests public authorities should:

• Consult with and involve disabled people’s organisations and human rights bodies in design and regular review processes
• Embed the social and human rights model of disability in the design and implementation of assessments
• Support people with disability to actively participate in generating evidence for their individual assessments, for example, through peer-supported self-assessment
• Involve multidisciplinary expertise within the disability assessment system, including human rights expertise
• Provide accessible and user-friendly information about application processes, eligibility criteria, appeal and support options, and supports available after an assessment is completed
• Eliminate duplicative or multiple methods of assessments, to increase consistency and transparency in processes and reduce administrative burden.[53]

Additional CRPD articles the NDIA’s approach to assessments should specifically abide by include:

• The right to dignity, respect, participation, inclusion and opportunity
• Respect for the autonomy and independence of people with disability, including the freedom to make choices
• The right to access information and access justice – including the right to review or appeal the contents and outcomes related to assessments
• The right to an adequate standard of living and social protection.

People with disability, families, carers, advocates and allies are ready and willing to support the NDIA and the Department of Social Services to design fair and equitable solutions to the address the barriers and challenges experienced across the NDIS pathway.

Explore and cost alternative options

To ensure NDIS reforms and initiatives target the true barriers to access and equity, the NDIA should explore multiple options and strategies. While independent assessments may work for some participants, in some circumstances, the process may be traumatising, unnecessary or a waste of time for others.

VCOSS and Empowered Lives members readily identified a range of alternatives that may be more cost-effective, beneficial, and respectful of existing care relationships. Enabling participants to access local, culturally safe and gender-sensitive options, through approaches that integrate with existing systems and workforces, would be practical and sustainable option.

Suggestions to improve the access and eligibility pathway include:

• Better resourcing pre-access communications and engagement initiatives to help people to understand the NDIS, consider whether they are eligible and prepare for applying by:
  • Strengthening the capacity of the Information, Linkages and Capacity Building stream to deliver targeted and ongoing early engagement activities through Partners in the Community and grant-based programs
  • Partnering with existing, trusted organisations and networks to provide information, advice and soft entry points for communities, ages and life stages
  • Investing in research to explore the prevalence of disability across a range of cohorts and service systems to inform action to address specific NDIS access barriers.

• Developing clearer guidance and templates for health professionals completing reports, noted as a potential driver for inconsistency and an area for improvement by the Tune Review and the NDIS Joint Standing Committee inquiry into NDIS Planning.[54]

• Addressing financial barriers to collecting evidence by funding access to early, free and optional assessments to support participants’ NDIS applications:
  • Assessments should be conducted by the participants’ chosen local provider
  • Assessment costs could be offset by a Medicare rebate or similar financial support
  • Assessments should be targeted to assist people who are new to adapting to their disability, people who do not have a history with or access to an existing provider or assessor, and people whose support needs are unclear.

• Honouring the integrity and value of existing expert advice, reports and assessments, and only seeking additional assessments where necessary.

• Improving capacity and skills of Planners and delegates to understand, interpret and apply the findings of reports and assessments to access and planning processes.

• Increasing employment of people with disability across the NDIA and Partners in the Community to deliver experience-informed support across every step of the NDIS journey.

• Working with Governments and sectors to address systemic issues that impact access to the NDIS, including health and allied health workforce challenges and waiting lists.

Given the heightened focus on the financial sustainability of the Scheme, it is important that a range of options and pathways to are identified, modelled, costed and tested. Without this detailed analysis, there cannot be confidence that the selected approach is the best approach – for participants, their carers and families, or the Australian Government.

_________________________________________________________________________

This submission was prepared by Rhiannon Wapling and authorised by VCOSS CEO Emma King. For enquiries please contact Deborah Fewster at deborah.fewster@vcoss.org.au.

A fully accessible version is available online at vcoss.org.au/policy

[1] Mavromaras et al, Evaluation of the NDIS: Final Report, National Institute of Labour Studies, February 2018, p.191.

[2] NDIA, Aboriginal and Torres Strait Islander participants, 30 June 2019, p.18.

[3] Ibid., p.23.

[4] Ibid., p.83.

[5] NDIA, Culturally and Linguistically Diverse participants, 30 June 2019, p.20.

[6] ECCV, ‘It’s Everybody’s Business’: Multicultural Community Perspectives on Disability and the NDIS, June 2019, p.8

[7] Federation of Ethnic Communities’ Councils of Australia et. al., Barriers and exclusions: The support needs of of newly arrived refugees with a disability, February 2019, p.24-25; ECCV, ‘It’s Everybody’s Business’: Multicultural Community Perspectives on Disability and the NDIS, June 2019.

[8] Ibid., p.10.

[9] NDIA, Culturally and Linguistically Diverse participants, 30 June 2019, p.23.

[10] NDIA, NDIS Quarterly Report to disability ministers Q2 2020-2021, December 2020, p.96.

[11] C Cortese, F Truscott, M Nikidehaghani & S Chapple, Hard-to-reach: the NDIS, disability, and socio-economic disadvantage, Disability & Society, June 2020, p.13.

[12] Ibid.; K Paterson, Homelessness and the National Disability Insurance Scheme – Challenges and Solutions, Council to Homeless Persons, May 2017, p.2

[13] Every Australian Counts, ‘The politics of distraction…’, 5 February 2021, accessed 15 February 2021.

[14] Productivity Commission, Disability Care and Support: Inquiry Report Volume 1, July 2011, p.257.

[15] Ibid., p.334.

[16] Ibid., p.314.

[17] Ibid., p.326.

[18] Ibid., p.340.

[19] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.67.

[20] Ibid.

[21] Ibid, p.66.

[22] NDIA, Independent Assessments: Pilot learnings and ongoing evaluation plan, September 2020.

[23] Ibid.

[24] Ibid.

[25] R Clun, ‘Just not OK’: Only 6 per cent of NDIS trial participants completed survey, Sydney Morning Herald, 23 December 2020. accessed 23 December 2020.

[26] NDIA, The second independent assessment pilot, accessed 22 December 2020.

[27] Senate Community Affairs Legislation Committee, Budget Estimates – 29 October 2020: Answer to questions on notice, Social Services Portfolio, National Disability Insurance Agency, Reference NDIA SQ20-000342, 16 December 2020.

[28] NDIA, Consultation paper: Planning Policy for Personalised Budgets and Plan Flexibility, November

[29] Productivity Commission, Disability Care and Support: Inquiry Report Volume 1, July 2011, p.308.

[30] NDIA, Independent Assessment Framework, August 2020, p.27.

[31] Ibid., p.8.

[32] NDIA, Consultation paper: Access and Eligibility Policy with independent assessments, November 2020, p.10.

[33] Ibid., p.13.

[34] Federation of Ethnic Communities’ Councils of Australia et. al., Barriers and exclusions: The support needs of of newly arrived refugees with a disability, February 2019, p.19-20.

[35] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.62.

[36] Commonwealth Joint Standing Committee on the NDIS, NDIS Planning Final Report, December 2020, p.xxi, 48-49, 55-56, 115-124.

[37] NDIA, Consultation paper: Planning Policy for Personalised Budgets and Plan Flexibility, November 2020, p.9.

[38] Australian Government, Aus Tender – Closed ATM View – RFT 1000724626, accessed 22 December 2020.

[39] Productivity Commission, Disability Care and Support: Inquiry Report Volume 1, July 2011, p.327.

[40] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.67.

[41] Ibid., p.66.

[42] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.60.

[43] Villamanta Disability Rights Legal Service Inc and Gippsland Disability Advocacy Incorporated, Joint media release: AAT rejects NDIS Independent Assessment, 9 September 2020, accessed 23 December 2020.

[44] Commonwealth Joint Standing Committee on the NDIS, NDIS Planning Final Report, December 2020, p.202.

[45] Department of Social Services, Building the Local Care Workforce: Allied health, accessed 24 December 2020.

[46] National Disability Services, State of the Disability Sector Report 2020, December 2020, p.48.

[47] NDIA, Consultation paper: Access and Eligibility Policy with independent assessments, November 2020, p.23.

[48] Australian Government, National Disability Insurance Scheme Act 2013, s.4(7) and (8).

[49] NDIA, Consultation paper: Access and Eligibility Policy with independent assessments, November 2020, p.20-21.

[50] Ibid., p.21.

[51] UN, Convention on the Rights of Persons with Disabilities Article 4.3, 2006.

[52] L Waddington and M Priestley, A human rights approach to disability assessment, Journal of International and Comparative Social Policy, 1–15, October 2020.

[53] Ibid., p.10.

[54] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.73; Commonwealth Joint Standing Committee on the NDIS, NDIS Planning Final Report, Recommendation 17.

VCOSS is the peak body for social and community services in Victoria. VCOSS supports over 40 Victorian disability advocacy organisations to undertake collaborative systemic advocacy under the banner of the ‘Empowered Lives’ campaign.

We welcome the opportunity to provide input to this inquiry.

The State Disability Plan is the Victorian Government’s key platform for driving a cohesive public policy direction to improve the lives of people with disability. The 2021-2024 State Disability Plan will replace the current plan, Absolutely everyone 2017-2020, and is a requirement under the Disability Act 2006.

VCOSS and Empowered Lives members are passionate about our shared vision for an inclusive Victoria, where people with disability have the same opportunities as their peers. Every day, people with disability face a range of physical, social and cultural barriers that impact their independence, limit their freedoms and impede their rights. COVID-19 has presented a range of new challenges for Victorians with disability, and exposed the impact of existing and pervasive systemic barriers and discriminatory attitudes.[2] As consultation for the next Plan re-commences, the concept of building back better – in a way that is inclusive and accessible for everyone – is key to designing an equitable recovery.

While the Victorian Government’s role as a disability support provider and funder has changed substantially through the roll out of the National Disability Insurance Scheme (NDIS), the state’s vital and ongoing responsibility for delivering inclusive and responsive mainstream services and civic spaces, and in eliminating systemic disadvantage and inequity, remains unchanged. This includes, but is not limited to, child and family services, housing, health, education and training, employment, emergency management and response, justice, and transport.

To drive meaningful and lasting change, the State Disability Plan must take a whole-of-government approach by promoting a shared vision and articulating a clear and accountable agenda.

Through the State Disability Plan, the Victorian Government must outline how it will build on progress to date, create connections between services and systems, and measure outcomes. The State Disability Plan should also work to advance the human rights of people with disability and shift community attitudes.

The high-level National Disability Strategy, which focuses on the realisation of Australia’s human rights commitments, is also due for replacement in 2021. Particularly in the context of COVID-19 recovery, we urge governments to align planning and take a constructive and collaborative approach to addressing critical government and community-wide issues.

While the State Disability Plan will focus on areas of Victorian Government responsibility, it also should consider the broader political and social context and be flexible and responsive to:

• the Royal Commission Royal into Violence, Abuse, Neglect and Exploitation of People with Disability
• the Royal Commission into Aged Care Quality and Safety
• the Royal Commission into Victoria’s Mental Health System
• workforce initiatives including the introduction of the Victorian Disability Worker Regulation Scheme, the ongoing implementation of the Keeping the sector strong workforce plan and the development of the National NDIS Workforce Plan
• the current and future impact of emergencies including the bushfires, natural disasters and pandemics on people with disability, carers, families, advocacy organisations and service providers.

Where are we now?

VCOSS and Empowered Lives members came together in February 2020 to reflect on a range of themes and progress across government, business and the community. Through these conversations, participants and advocates reflected on the current state of access and inclusion in Victoria.

The findings of an Australia-wide online survey developed to inform the next National Disability Strategy echo some of these sentiments and concerns.[3] While survey respondents reported observing improvements in visibility, accessibility, inclusion and attitudes, they also said things have not changed or become worse in regards to income, safety, health and wellbeing, and discrimination.[4]

Meaningfully engaging with people with disability

Improving the description of disability and disability inclusion in the next State Disability Plan (Topic 1)

RECOMMENDATION

• Draw on human rights approaches to develop a contemporary description of disability that promotes government and community-wide action and change.

One in five Victorians live with disability, and through the delivery of services, supports and spaces, the Victorian Government plays a significant role in supporting people with disability to participate in civic, social and economic life. We support the intention to take a human rights approach to describing disability in the next State Disability Plan.[5]

Across various laws, policies and programs, disability is often defined in medical terms with a focus on limitations, impairments and conditions. A human rights approach to describing disability makes inclusion everyone’s business. It draws attention to the responsibilities we all have to remove systemic physical, social, cultural and environmental barriers, and to change attitudes and behaviours. The description of disability as part of human diversity, promoted by the UN Special Rapporteur on the rights of persons with disabilities, highlights the role of governments, organisations and communities to remove barriers.

“Imagine a world where we embrace human diversity. We remove the barriers in society and institutions that create discrimination and inequality. We go past the fear and misconceptions that have historically resulted in so much social exclusion. We see disability as part of human diversity, like any other difference. And we see the contributions that persons with disabilities can make in all areas of society.”[6]

Through a contemporary, rights-based definition of disability, the State Disability Plan can lead and promote a whole-of-government and community-wide approach to ensuring the rights, freedom and agency of Victorians with disability are promoted and realised.

Finding better ways to include people with disability in making the next State Disability Plan (Topic 2)

Recommendations

• Work in partnership with people with disability, communities and organisations to co-design engagement strategies that enable maximum participation during COVID-19, while promoting and protecting people’s health and wellbeing.
• Work with advocacy and community organisations to design targeted approaches for engaging ‘hard to reach’ communities.
• Use the State Disability Plan consultation to test, refine and build upon the draft Victorian Government Public Consultation Framework.

People with disability are the experts in their own lives, and their experiences, perspectives and voices must be heard through the development of the State Disability Plan. People with disability are best placed to identify their own needs, and how government decisions, policy-making and service design will impact them. Lived experience must be not only heard, but truly valued. The State Disability Plan must reflect and respect the insights and ideas of people with disability, as well as carers and families, advocates, academics and community organisations.

While traditional face-to-face community engagement techniques may not be safe or suitable in the context of COVID-19, the Victorian Government must provide accessible and meaningful avenues for people to contribute their perspectives. Consultation on both the State Disability Plan and the National Disability Strategy has been extended – decisions we welcome, as these strategies are too important to be rushed.

While Victoria is well positioned in its response to COVID-19 at the time of writing, the pandemic continues to impact the daily lives of all Victorians. People are stressed, anxious and juggling a range of challenges that might limit or prevent their participation in consultation processes.

Through this time of uncertainty, well-designed and considered engagement strategies would give people the chance to have a say, feel heard and contribute to change at a state and national level. We recommend the Victorian Government designs and provides further consultation opportunities to enable people to easily and safely share their insights in 2021.

Co-designing safe and meaningful engagement opportunities

The co-design principles noted in the Consultation Paper – inclusion, respect, participation and testing – should be embedded in the developmental stages of the State Disability Plan by working with people with disability to co-design “COVID-safe” consultation strategies.

Co-design goes beyond consultation; it is an approach that listens to and learns from people’s perspectives and ideas early on, values multiple forms of expertise including lived experience, and shares the power in exploring and designing different and creative solutions.[7] Co-design allows space for preconceived ideas and assumptions to be challenged and for new, realistic and effective solutions to be identified.

Across government departments and programs, there are many ways in which co-design principles can be applied to find creative, new solutions to complex problems and enhance civic participation.[8]

Some recent examples in Victoria include:

• The co-design process led by the Department of Premier and Cabinet to shape the transfer of disability services to non-government providers[9]
• Victoria’s 10-year plan to end family violence, where a range of people are involved in co-designing the Rolling Action Plan, developing Support and Safety Hubs, and providing advice through ongoing engagement forums[10]
• The Accessible and Inclusive Geelong Project, which leveraged deep community engagement and participatory design to with a range of stakeholders to identify accessibility issues and solutions[11]
• The Wellington Shire Council’s work with Scope to create e-learning on communicating with people with disability for staff working in Emergency Relief Centres[12].

Integrating co-design principles and into the development of the State Disability Plan will improve engagement and deliver better outcomes. We encourage the Victorian Government to work carefully and creatively to co-design a range of alternatives and options. Some ways the State Disability Plan could do this include:

• Engaging the DHHS Accessible Communications Reference Group, established during the pandemic, to provide advice and guidance on communications and engagement approaches to support safe, equitable participation in the development of the next Plan.
• Employing people with lived experience to co-design targeted engagement strategies to reach people with disability, carers and families, and the broader community.
• Creating resources that encourage people to think about and capture their ideas, individually or in a group, to feed into the State Disability Plan. For example, through the development of an Easy English discussion guide, people could work through the questions in their own time and at their own pace.
• Establishing multiple, accessible means to listen to and capture people’s perspectives, building on the existing online forms and discussion boards. This could include video submissions, small group teleconferences, a hotline, an online survey, and using social media to drive conversations.
• Using peer models of engagement by employing people with lived experience and local community leaders to extend the reach of consultation in the community. For many people, speaking to others who share and understand their experiences can build faster, stronger connections for people to feel comfortable sharing their thoughts and ideas.
• Sharing and testing concepts and drafts with people and groups as the State Disability Plan develops to allow space for further feedback and discussion.

Engagement strategies should focus on enabling maximum participation while promoting and protecting people’s health and wellbeing. It is also important to note that online-only approaches may not effectively or fairly reach with disability living in rural and regional areas or on low incomes, who are more likely to be ‘digitally excluded’ through limited internet access, lower digital literacy, and cost barriers to accessing technology.[13]

Connecting with ‘hard to reach’ communities

We support the Victorian Government’s commitment to inclusive engagement and creating safe spaces for diverse voices. Many people with disability experience additional barriers in accessing engagement processes, which can be compounded for people who experience multiple and intersecting forms of discrimination and disadvantage. Social and cultural stigma around identifying as having a disability, fear of speaking up, mistrust of government and support services, negative past experiences and trauma can all contribute to reluctance to engage in consultation processes – even when policies and decisions have a direct impact on people and communities. The barriers are particularly heightened for people with complex communication needs.

We recommend the Victorian Government works with advocacy and community organisations to design targeted approaches for engaging ‘hard to reach’ communities. These organisations can assist the Victorian Government to:

• explore the challenges and barriers experienced by some communities
• develop engaging and inclusive consultation opportunities
• find and connect with existing groups and networks
• promote consultation opportunities.

Testing and refining the draft Public Engagement Framework

Consultation for the State Disability Plan presents an ideal opportunity for the Victorian Government to test, refine and build upon the draft Public Engagement Framework[14] and to try new community engagement techniques in the context of COVID-19. The learnings of this experience could feed into the ongoing development of the Public Engagement Framework.

Driving systemic, state-wide change

Introducing overarching approaches to strengthen government commitments under the new State Disability Plan (Topic 4)

Recommendations

• Finalise and publicly release the whole-of-government universal design policy.
• Mandate the application of universal design principles across all government-funded building and construction projects and all publicly funded services.
• Role model best-practice in universal design and promote the social and financial benefits of inclusive infrastructure to commercial developers, councils, and other states and territories.
• Ensure the valuable insights of people with disability are heard clearly and early in the development or refurbishment of all public places, spaces and services.
• Develop and fund targeted, evidence-based and co-designed community awareness and education campaigns.
• Measure the effectiveness of community awareness and education campaigns through ongoing research and continuous improvement approaches.

People with disability experience a range of social, physical, environmental and cultural barriers that limit their participation in the community and prevent the realisation of their human rights. We support the Victorian Government’s intention to include universal design and community attitudes as overarching approaches to strengthen the State Disability Plan.

Universal design

Good design supports inclusion and equity for everyone. The principles of universal design focus on making products, buildings, environments and experiences accessible to as many people as possible of all ages, abilities and cultural backgrounds.[15]

By focusing on the user experience, universal design promotes the proactive inclusion of features that support equitable access. Embedding universal design in projects from the outset is not only more cost-effective; it enables more people to participate in social, economic and community life.

Universal design guidelines are increasingly being used by the Victorian Government in educational settings, in parks and recreational spaces[16] and in the online environment to ensure resources are easy to use and accessible[17]. In the midst of Victoria’s construction blitz, and during a significant shift to digital service delivery, it has never been more important to prioritise the principles of universal design. As a state and as a community, we cannot afford to make avoidable, expensive and exclusionary mistakes.

VCOSS and Empowered Lives members are concerned that too often, universal design principles are not applied in the development or refurbishment of public spaces. Our members and the communities they support report that people with disability are often not consulted in the development of new community facilities, or not engaged early enough, which can see accessibility features added-on at later stages of development projects. It is not acceptable that in 2020, we continue to see stories of equitable access being an afterthought in the design and construction of community spaces[18] or that investments in inclusion are not prioritised[19].

We welcome the ongoing development of the whole-of-government universal design policy, identified in the 2018 State Disability Plan Annual Report. As part of this policy, we urge the Victorian Government to mandate the application of universal design principles across all government-funded building and construction projects and all publicly funded services. This includes all homes build and refurbished through Victoria’s $5.3b Big Housing Build.

As the one of leading influencers and funders of construction in the state, the Victorian Government is well-placed to model best-practice and ensure publicly funded places and spaces can be used by all Victorians. Through this leadership role, the Victorian Government should also advocate to commercial developers, councils and other states and territories about the social and financial benefits of inclusive infrastructure.

We encourage the Victorian Government to build upon universal design approaches by engaging people with disability early and effectively in consultations about public spaces and projects. Through the development and implementation of the Victorian Government Public Engagement Framework[20], there is an opportunity for the government to promote clear and consistent guidelines about community engagement and to reinforce the importance of early and meaningful engagement of people with disability.

Community attitudes

While VCOSS and Empowered Lives members have noted improvements in public visibility, awareness and understanding of disability, harmful and stigmatising views persist. People with disability continue to experience high levels of discrimination, with one in four people with disability in Australia aged over 15 have experiencing some form of discrimination in the past year.[21] Of 1633 complaints to the Victorian Equal Opportunity and Human Rights Commission (VEOHRC) last year, 32 per cent were in relation to disability discrimination.[22]

There needs to be broad and sustained work to change attitudes across government-funded services, such as schools, healthcare providers, public transport and the justice system, and throughout the wider community.

The benefits of applying universal design approaches can only truly be realised in tandem with concerted efforts to change community attitudes. Using the findings of its 2018 community survey, the Victorian Government should make informed and strategic investments in behaviour change campaigns and education programs.

Ideas from VCOSS and Empowered Lives members include:

• Comprehensive training and tailored resources, co-designed and delivered by people with disability, for staff across all government departments and services
• More visible and valued leadership opportunities for people with disability across government and the community
• Initiatives to improve the disability confidence of employers through better training for HR professionals and greater knowledge of the resources and funding available for reasonable adjustments in the workplace
• Public awareness and education campaigns that show the diversity of disability and work to break down barriers and stigma.

We also recommend the Victorian Government builds on the learnings of previous campaigns, and leverages insights from other pilot programs and sectors, to inform a continuous improvement approach. Some examples include:

• The Change Your Reactions campaign to promote better understanding and inclusion of people with autism, led by Amaze with investment from the Victorian Government[23]
• Public Transport Victoria’s ‘Access Your Awareness’ campaign
• Television programs such as ‘You Can’t Ask That’, ‘Employable Me’ and ‘Love on the Spectrum’ that explore issues, assumptions and everyday experiences through documentary-style content.

Any further campaigns, resources or training programs should be co-designed by people with disability. Post-pandemic, opportunities to leverage the expertise of the Department of Premier and Cabinet’s Behavioural Insights Unit for awareness and attitude change campaigns should be explored.

Supporting the interface between NDIS and mainstream services (Topic 5)

Recommendations

• Work collaboratively with the Federal Government and the National Disability Insurance Agency (NDIA) to identify service gaps, address interface issues and support a thriving disability support workforce and market.
• Improve support for people who are ineligible for the NDIS through specialist state-based programs and by advocating for a stronger, innovative Information, Linkages and Capacity Building (ILC) program.
• Provide ongoing assistance and capacity-building opportunities to support organisations to transition to new funding environments, including training, networking, peer support and targeted resources.
• Improve access and inclusion across all Victorian Government services and departments through targeted action and investment.
• Continue work to design and implement practice models and procedures to improve access and connections between NDIS-funded and state-funded services.
• Support work to develop the next National Disability Strategy and advocate for a new, fit-for-purpose National Disability Agreement.

We are now four years into the full scheme roll out of the NDIS in Victoria, however, there are persistent concerns about equitable access to the scheme and service gaps. System boundaries, attitudes and awareness continue to limit access to integrated, holistic and outcomes-focused support from different service systems.[24] The interface between the NDIS and universal or ‘mainstream’ services, including health, education, justice and aged care, is also often unclear.

While Victoria’s role as disability service provider has changed through the transition to the NDIS, there remains a strong and essential role for the Victorian Government to support people with disability, families and carers by:

• Ensuring all people with disability, regardless of their eligibility for the NDIS, can readily access universal healthcare, public education, the justice system, employment assistance and other mainstream services
• Working collaboratively with the Federal Government to resolve any outstanding interface issues between state-based mainstream services and the NDIS.

We welcome the Victorian Government’s four-year, $208.8m investment in supporting services that are out-of-scope for the NDIS in the 2020-21 Budget. This will make a significant difference for people who do not fit within the NDIS eligibility criteria.

VCOSS and Empowered Lives members are concerned that people experiencing disadvantage and isolation face additional challenges in navigating eligibility processes for NDIS and accessing universal services. As noted by many respondents to the independent review of the NDIS Act 2013, there is a risk that people experiencing disadvantage may be more vulnerable to falling between the cracks.[25] Our members play an active, typically unfunded, role in supporting people to find alternative services or funds.

The Information, Linkages and Capacity Building (ILC) part of the scheme, which was intended to assist all people with disability, their families and carers, regardless of their eligibility for individual packages[26], is currently not delivering effective or fair support. Two key streams of the ILC policy framework – the role of Local Area Coordinators (LACs) in connecting people to services, and the capacity-building grants program – are not working as envisaged and require further attention and investment to ensure people are connected to the supports they need.[27]

While LACs are expected to spend 20 per cent of their time supporting people with disability through information, referrals and building community capacity[28], we know from our members that LACs do not have capacity to deliver this assistance on top of the large workloads and high targets associated with individual NDIS funding plans.

The ILC grants program, which supports the delivery of additional community assistance, requires organisations participate in competitive, often short-term, funding rounds. Grant application processes take time and resources that many stretched organisations cannot access or afford. Alternative funding options are limited for organisations who miss out on ILC grants.

The Victorian Government has invested in building the capacity of organisations to transition to the new funding environment, including through the Strengthening Sector Resilience Project coordinated by VCOSS. Our review of the learnings of this project, which included interviews with project participants, found organisations want further support from the Victorian Government and the NDIA, including opportunities for ongoing dialogue, feedback on their applications, and further capacity-building training, networking and peer support.

Two key national policy instruments – the National Disability Agreement and the National Disability Strategy – are now significantly outdated. As identified by the Productivity Commission in 2019, the current National Disability Agreement “no longer serves its purpose, has a weak influence on policy, and its performance targets show no progress in improving the wellbeing of people with disability”.[29] The National Disability Strategy is also due for renewal and community consultation is underway.

Through the concurrent development of state and national plans, strategies and funding agreements, there has rarely been a better time for governments to collaborate and create meaningful change. VCOSS and Empowered Lives members urge governments and the NDIA to move beyond patchy policy approaches and seize this critical and timely opportunity to deliver comprehensive, sustainable, fair and meaningful support for people with disability.

Children and families

recommendationS

• Ensure universal parenting supports, sexual and reproductive health services, family violence services and child, youth and family services are responsive, accessible and inclusive for children with disability and parents with disability.
• Provide timely, affordable access to assessments for children and young people with disability, and ensure early intervention supports can be easily accessed.
• Develop and release accountable annual action plans to support the implementation of the Victorian Government Carers Strategy 2018-2022.
• In introducing an Intimate Lives outcome area for the next State Disability Plan, fund and expand initiatives that boost access to sexual health and reproductive services, family planning services and parenting supports for people with disability.
• Continue investment in professional development for child, youth and family services staff and family violence services staff in understanding disability, disability rights, early intervention and support pathways, and inclusive practice.
• Fund specialist family violence initiatives to support women, children and young people with disability to be safe and free from violence.

State-funded programs and services play a vital role in supporting children with disability, their families and carers, as well as parents with disability, to grow, learn and thrive. For many children with disability, the pathway to early support starts with their doctor, maternal child health nurse or in early learning settings, where developmental or learning delays are often identified.

While early childhood intervention services have transitioned from the Victorian Department of Education and Training to the NDIS, the Victorian Government has continued to support children and families by boosting professional development for people working in important early identification and support roles.[30]

To access specialist programs services, including inclusion support in early learning, kindergarten and school settings, and NDIS funding, evidence or assessments usually need to be completed and collated. Assessments can be expensive, confusing and overwhelming for many families trying to seek support for their child. For example, long waiting lists and limited services for autism assessments have a significant impact on people living in regional and rural communities and low-income families, who may travel long distances to see a specialist or seek out private services at their own cost.[31] In addition, girls and women with autism are often underdiagnosed or misdiagnosed[32], which may reduce their access to timely and appropriate supports and services.

We welcome the Victorian Government’s commitment to fund 3150 additional autism assessments over four years, through a $7m commitment in the 2020-21 Budget. We encourage the Victorian Government to review evidence requirements for supports for children and young people with disability in all settings, to ensure an emphasis on assessments does not limit access to early intervention.

Support for carers and siblings has also changed through the transition to the NDIS. One-third of carers do not feel the NDIS has helped, and feel unable to access services, programs and activities.[33] Over half of carers report the NDIS has reduced their ability to provide care[34], and the majority do not access any carer-specific supports[35].

Carers are also facing increased challenges in the context of COVID-19, including working and learning from home and added financial strain. We welcome the Victorian Government’s release of its first-ever, whole-of-government strategy to recognise and support carers[36], and recommend annual action plans are developed to support implementation and accountability.

Across family services, out-of-home-care and child protection services, children and young people with disability must be connected to the right supports. Too often, support is only available when a situation reaches crisis point and children enter the out-of-home care system. While children in out-of-home-care generally experience poorer outcomes across a range of indicators, for children with disability in care, these outcomes are likely to be worse, particularly when children are not connected to appropriate disability supports.[37] Analysis from the Australian Institute of Health and Welfare (AIHW) in 2018 estimated 14 per cent of children in out-of-home-care have a disability.[38]

Family services, child protection workers and carers are not always equipped with the knowledge, skills and training to support children or parents with disability. As outlined in the Roadmap for reform: Strong families, safe children, the Stronger carers, stronger children strategy and the DHHS Disability Action Plan 2018-2020, the Victorian Government is progressing a range of professional development initiatives to boost the knowledge and skills of the child, youth and family services workforce. These investments must be sustained to improve outcomes for children and young people with disability.

The rights of people with disability to exercise freedom, agency and risk in their personal lives are impacted by discriminatory attitudes and beliefs. Sex and relationships education is not adequately provided to children and young people with disability, and sexual and reproductive health services are often not accessible or inclusive. Parents with disability do not receive the same level of support during pregnancy, to build their parenting skills or to meet with and learn from other families. Untested assumptions about the parenting capacity of expecting parents with disability contribute to higher, earlier involvement of child protection and higher rates of child removal.

The proposed addition of an Intimate Lives outcome area to the next State Disability Plan is welcome – but true change will only happen if targeted initiatives are funded and expanded. The Victorian Government should maintain and boost investment in universal and targeted parenting and carer programs that deliver tailored support for children with disability, and build the skills, strengths and capacity of parents, families and carers. This should include:

• Improving inclusion and access to universal parenting programs, playgroups and peer-support programs, and sexual and reproductive health services
• Funding and expanding specialist services and programs, such as the Women with Individual Needs Clinic at the Royal Women’s Hospital and the Positive Powerful Parents Self-Advocacy Group
• Additional and ongoing professional development to build the capacity of the child, youth and families sector to support the rights and needs of people with disability.

Women, children and young people with disability are more likely to experience family violence and more often face barriers in accessing support and justice.[39] A range of structural barriers and a lack of disability expertise across family violence services limits and prevents the provision of appropriate support to women with disability.[40] Victim-survivors with disability are often not systematically identified, and women with disability face additional challenges in disclosing and reporting abuse, and in accessing protection and justice.[41] Co-resident violence in disability group homes often does not receive practical attention or support for victims and perpetrators.[42]

Given the evidence that domestic and family violence increases during disasters[43], it is vital that services are responsive and inclusive for women with disability during and beyond the COVID-19 pandemic. While many services have transitioned to online or digital delivery during COVID-19, there are limitations in these models that may particularly impact women with disability. Women and children may not be able to seek support or flee violence until the peak of the pandemic has passed. It is crucial that family violence support services and crisis centres are supported to respond to an anticipated increase in demand.

We urge the Victorian Government to build the capacity and disability awareness of family violence support services, while continuing to invest in specialist services to assist women, children and young people with disability. A multi-faceted approach could include:

• Professional development and training for all family violence support services in working with women, children and families with disability
• An accessibility audit of all crisis accommodation services and the development of Disability Action Plans for service providers (see Housing section)
• Sustained, long-term investment in specialist family violence initiatives to support people with disability to be safe and free from violence, including ongoing funding for the Disability Family Violence Crisis Fund and a tailored response to the growing issue of co-resident abuse.

Health

Recommendations

• Ensure timely and appropriate medical services and healthcare are available for people with disability during and beyond the COVID-19 pandemic, including access to COVID-19 screening and treatment, and ongoing access to general medical and specialist services.
• Drive attitude change and boost knowledge about disability across all health services through ongoing investment in training, promoting collaboration between health and disability services, and improving policies and procedures.
• Extend funding for psychosocial services to ensure people who are ineligible for the NDIS can access timely, ongoing support.
• Ensure the State Disability Plan is responsive to the findings and recommendations of the Royal Commission into Victoria’s Mental Health Services.
• Require all health services to finalise and publicly release their Disability Action Plans, and develop annual implementation plans to set, measure and report on outcomes.

Australia’s healthcare system is often referred to by government and politicians as one of the best in the world, however health and wellbeing support and outcomes vary considerably across the community. Adults with disability are six times more likely to assess their health as ‘poor’ or ‘fair’ and are 12 times more likely to report high levels of psychological distress.[44] Half of people living with a chronic health condition also have a disability.[45] The barriers faced by people with disability in accessing healthcare are influenced by a range of structural and social factors, from the availability of services to costs, communication issues, staff training and discriminatory attitudes.[46]

People experiencing multiple layers of disadvantage and complexity, including people with complex communication needs, dual disability and/or psychosocial disability, can face additional challenges in accessing healthcare. Communication issues, combined with the attitudes of health professionals, may mean people’s symptoms are missed or dismissed, or incorrectly attributed as being related to their mental health or behaviours, which can place people at greater risk of receiving inappropriate diagnosis or treatment.

As evidenced during the February 2019 hearings of the Disability Royal Commission into healthcare[47], and as has emerged through the COVID-19 pandemic locally and internationally, these issues can deter or prevent people with disability from accessing medical care and enjoying quality of life. While advocates from across the globe[48], the World Health Organisation[49] and Australia’s Disability Discrimination Commissioner[50] called for governments to ensure the rights of people with disability are protected, and that people are not discriminated against in medical decision-making, VCOSS and Empowered Lives members remain concerned about what will happen over the pandemic’s trajectory.

We welcomed the Australian Government’s release of the Management and Operational Plan for COVID-19 for People with Disability in April 2020[51], however, the plan must be continually updated as the pandemic evolves. Like all plans, the key to its success will be in implementation. We urge the Victorian Government to work with all healthcare providers to implement the plan and to ensure people with disability can stay safe, well, and access healthcare during the pandemic. The recommendations of the Disability Royal Commission, which explored the impact of the COVID-19 pandemic for people with disability during hearings in August 2020[52], should be heard and acted upon by all levels of government.

Through the previous State Disability Plan, the Victorian Government implemented a range of initiatives to improve access and inclusion across the state’s healthcare services, including requiring all services to develop a draft Disability Action Plans, promoting dental and cancer screening programs, and professional development and training programs.[53]

The interface between the NDIS and health services continues to be difficult and confusing for people with disability, families and carers, and service providers. While discrete arrangements have been met for some health-related supports[54], there remains a lot of uncertainty about which system funds which type of support.

For example, funding for community mental health services has transitioned to the NDIS, leaving the Victorian Government with responsibility for a relatively small range of psychosocial support services.[55] While interim funding has been provided to support people who are ineligible for the NDIS[56], there remain concerns that many people with psychosocial disability are not being supported.

Of around 690,000 Australians living with a severe mental health condition, approximately 21,700 receive psychosocial supports under the NDIS and a further 42,300 are likely to be eligible for NDIS-funded psychosocial support but are not yet receiving assistance.[57] In Victoria, almost a quarter of NDIS applications made by people with psychosocial disability were rejected.[58] Across Australia, the rejection rate was worryingly highest for people who are new to receiving any support.[59]

Victorian community service organisations have long provided a range of support to people with mental illness, including treatment, psychosocial support and rehabilitation to help people manage their illness and build life skills. These services are a vital component of the mental health system, sitting alongside clinical care and NDIS disability supports. Psychosocial supports keep people out of hospital, help them recover at home and stay well.

The interim report into the Royal Commission into Victoria’s Mental Health Services explores many of the funding and eligibility challenges that have arisen through the transition to the NDIS, including growing service gaps. Among its extensive findings and recommendations, the Productivity Commission’s inquiry into mental health recommends people who require psychosocial supports should be able to continue accessing them, regardless of changes to the source of funding for the service, and that access barriers should be removed.[60]

While it is likely the findings of the Victorian Royal Commission, and responses to the Productivity Commission’s inquiry, will change the shape of mental health services in Victoria in the longer term, we cannot leave a hole in the support system in the meantime. Funding for continuity of support and for programs like the Early Intervention Psychosocial Response service should be maintained and expanded.

Hospital patients with disability often remain in hospital long after they are due to be discharged. In 2019, 80 Victorian patients with disability were stuck in hospital for more than three months after they were ready for discharge because of NDIS-related delays.[61] While collaborative work to develop a Hospital Discharge Delay Action Plan[62] is welcome, to work effectively, the plan must be supported by the availability of appropriate services and housing options.

Through the next State Disability Plan, we encourage the Victorian Government, the Department of Health and all health and medical services to focus on addressing the health inequities experienced by people with disability and increase access to timely, appropriate support. This should include work to finalise and release actionable and meaningful Disability Action Plans to drive change and improve outcomes.

Housing

Recommendations

• Continue work to amend or improve Victorian building codes and guidelines to increase the application of universal design approaches and the inclusion of accessibility features in homes.
• Through representation at the Building Ministers Forum, advocate for the inclusion of universal design principles and minimum accessibility standards in the National Construction Code 2022.
• Increase awareness of disability rights in residential tenancies among property managers and landlords, including anti-discrimination laws and home modifications.
• Expand and improve home modification rights for tenants with disability through amendments to Victoria’s residential tenancy regulations.
• Work with the Federal Government to clarify roles and responsibilities for funding home modifications, to ensure people with disability or all ages living in all settings can access appropriate accessibility adjustments.
• Advocate for the development of innovative housing models for people with disability that maximise independence, choice and community participation.
• Conduct an accessibility audit of all crisis accommodation services in Victoria and fund capital works to improve inclusion.
• Work with all Victorian crisis accommodation services to develop and implement a Disability Action Plan.

A safe, affordable and appropriate home is essential for people to live a good life, but across Victoria, many people with disability find it difficult, if not impossible, to meet this basic need. The lack of affordable and accessible properties in both the private and social housing markets, rental insecurity, and inaccessible crisis accommodation present significant issues for Victorians with disability.

The NDIS supports around 10 per cent of Australians with disability. Of this 10 per cent, just 6 per cent are likely to be eligible for specialist disability accommodation (SDA) funding.[63] This means that most Victorians with disability live in private or social housing.

Victoria has a severe shortage of accessible housing, particularly in rural areas, as our homes have not been built to meet the needs of every Victorian. The lack of suitable housing, combined with issues in connecting to timely and appropriate supports, can mean people with disability are forced to stay in inappropriate settings including hospitals and residential aged care facilities[64] and experience lengthy delays in exiting prison[65].

Through funding, advocacy and policy levers, we urge the Victorian Government to act with urgency to boost the availability of housing for all Victorians experiencing disadvantage, including people living with disability. A safe home provides a solid foundation for health and wellbeing; this has never been more evident than during the COVID-19 pandemic. We welcome the Victorian Government’s four-year, $5.3b investment to build 12,000 new social and affordable homes through the Big Housing Build. In addition to this funding, there are additional measures the Victorian Government can take to make more homes accessible.

As part of the next State Disability Plan and whole-of-government approaches, we encourage the Victorian Government to take a leadership role to improve the accessibility and livability of new and existing homes through stronger universal design standards and guidelines. Simple changes to building codes, such as requiring adequate door widths, access paths and stepless shower recesses, can make homes more accessible to more people and 22-times easier to adapt if needed.[66] The Victorian Government could make state-based improvements to regulations and guidelines and advocate for the inclusion of minimum accessibility standards in the National Construction Code (NCC).

Measures should also be strengthened to prevent discrimination against people with disability in seeking, applying for and living in rental properties. While it is against the law to discriminate against people with disability who are applying to rent or renting a property[67], people with disability continue to experience discrimination from property managers and landlords.[68]

Funding eligibility for home modifications, and people’s rights and obligations regarding installation and removal, varies depending on the type of housing and the source of funding.[69] Information on funding options, installation rights and obligations for home modifications should also be clarified and promoted to ensure people with disability are able to enjoy greater independence and mobility at home. Regardless of the type of housing, and a person’s eligibility for the NDIS, all people with disability should be supported to make reasonable accessibility adjustments to their home without excessive red tape and out-of-pocket costs.

It is also crucial that SDA funding is used to drive the development of innovative housing options that support people with disability to have greater choice, control and independence. Shared living arrangements, especially where people are forced to live with other people they do not choose, can contribute to higher levels of violence, abuse and neglect, including staff-to-resident abuse and co-resident abuse.[70] VCOSS and Empowered Lives members have shared their concerns about the development of new accommodation options that embed restrictive practices, for example by installing two-way mirrors and locks on kitchen cupboards.

Research shows that small-scale and dispersed housing produces better outcomes for people with disability.[71] The NDIA’s SDA Innovation Plan outlines a range of objectives and actions to stimulate the development of diverse and progressive disability accommodation, informed by the interests and needs of people with disability.[72] The Victorian Government, in its role on the COAG Disability Reform Council, should advocate for new housing options that support the goals, needs and interests of people with disability.

Where housing arrangements are unsuitable or dangerous, people with disability must be connected to timely, appropriate support, including crisis accommodation. Without access to emergency accommodation, there is a significant risk that people with disability will be forced to remain in unsafe environments.

Most refuges, shelters and transition accommodation are not built to universal design standards.[73] Unfamiliar surroundings, a lack of privacy and transport issues can also present barriers for people with disability[74]. Ensuring environments are accessible also extends to the attitudes, knowledge and awareness of people working in crisis accommodation services.

The 2017 State Disability Plan annual report notes work with RMIT to review refuge facilities.[75] We encourage the Victorian Government to continue this work by conducting an accessibility audit of all crisis accommodation services and working with each provider to develop and implement a Disability Action Plan for their service.

Justice

Recommendations

• Ensure people with disability have full and fair access to information, systems and procedures across Victoria’s justice system.
• Increase funding for legal assistance, independent disability advocacy and self-advocacy, and strengthen partnerships between these services to support people with disability to exercise their rights.
• Support the implementation of guidelines and procedures through a robust, comprehensive mandatory training program about working with people with disability for all staff across the justice system.
• Expand Communication Access accreditation to all Victoria Police stations to boost the knowledge and communication skills of all officers and station staff.
• Continue and expand specialist programs for people with disability in justice settings, including liaison offices and intermediaries.
• Improve screening processes to identify people with disability at entry to the criminal justice system to enable early and ongoing provision of supports.
• Increase assistance for people with disability leaving prison, by improving collaboration between departments and increasing access to housing, employment supports and the NDIS.
• Ensure COVID-19 physical distancing measures and stay at home orders are clearly communicated to people with disability, and that police enforcing these laws and rules understand and consider the individual needs of people with disability.

Access to justice is a human right for people with disability.[76] However, across the justice system, people with disability experience a range of challenges and barriers that deny or frustrate their access – from the attitudes and beliefs of authorities to the lack of accessible information, advocacy and legal supports.[77] Without clear information and processes, adequately trained staff and specialised supports, people with disability are prevented from understanding and exercising their human and legal rights. It is fundamental that these issues are addressed, particularly in light of research that shows people with disability are more likely to be victims or witnesses of crime[78], are more likely to experience violence[79] and are overrepresented in the prison population[80]. Women with disability are particularly at risk of experiencing violence or abuse.[81]

Through the previous State Disability Plan, the Victorian Government continued work to improve access and inclusion for people with disability, including through guidelines, inter-agency protocols, better communication and training programs. Pilot programs such as the Communication Access accreditation of Box Hill Police Station[82] and court-appointed intermediaries[83] are working towards improving communications and engagement and should be evaluated and expanded. The introduction of an NDIS readiness program to assist prisoner transitions and access to supports, as well as e-learning modules for corrections staff, is also welcome.[84] Unclear processes and planning can contribute to delays to discharge or release, or can result in inadequate or ineffective supports being put in place, which may make people more vulnerable to re-offending.[85]

We encourage the Victorian Government, particularly the Department of Justice and Community Safety, and all relevant entities to continue building upon these initiatives to ensure people with disability can access fair, equitable outcomes.

Work must continue to empower people with disability to speak up, report crimes and exercise their rights through additional funding for independent disability advocacy, self-advocacy programs and free, timely legal assistance.

Further investment in training and professional development will be central to the successful implementation of guidelines and protocols and in driving long-term, cultural change. Greater attention must be paid to screening and assessments during entry to prison, to identify people with disability who may otherwise fall through the cracks. Prisoners with disabilities must be connected to appropriate supports during their time in prison and assisted to plan and prepare for their release through improved collaboration between housing, NDIS, employment supports and justice.

As Victorians adapt to ongoing and changing public health advice during COVID-19, measures must be communicated to people with disability through accessible materials. People responsible for enforcing compliance with public health directives, particularly police, should also be adequately trained in communicating with people with disability, their families and carers, and measures should be in place to ensure people with disability are not issued with unwarranted or unfair fines.

Places and spaces

Recommendations

• Through collaboration between the Department of Transport, transport operators and people with disability, develop and release Victoria’s plan for meeting the Disability Standards for Accessible Public Transport 2002.
• For every Victorian Government funded infrastructure project, consult with people with disability and mandate the use of universal design principles, to ensure the state’s “big build” benefits everyone.
• Ensure accessibility, inclusion and universal design principles continue drive state-wide infrastructure priorities, including through the work underway to update Infrastructure Victoria’s 30-year strategy.
• Increase the number of Changing Places facilities across the state, particularly in new developments such as sporting or recreational facilities and train stations.
• Work with the Federal Government and the NDIA to clarify roles and responsibilities in transport funding to ensure people with disability have access to safe, affordable local services.

Accessible transport, places and environments enable greater inclusion and participation of people with disability, older people and the whole community. As outlined earlier in this submission, we support the Victorian Government’s intention to embed universal design principles in the next State Disability Plan. Through initiatives like the Inclusive Schools Fund and the Accessible Building Program in schools[86], upgrades to 700 bus stops[87], the expansion of the Multi-Purpose Taxi Program[88] and the ongoing investment in Changing Places facilities, the Victorian Government is working to improve social and economic participation for people with disability.

While VCOSS and Empowered Lives members are supportive of these investments, accessibility and funding issues continue to impact people with disability every day.

“One day, I’d love to not have to think about accessibility. Every building, event and public transport option in Melbourne would be wheelchair accessible and I could simply go about my day like everyone else, not having to plan my day around accessibility.”[89]

Victoria’s transport network, including public transport, community transport and commercial passenger vehicles, is especially of concern for many people with disability, their families and carers. Without reliable and affordable transport, people with disability have limited opportunities to learn, work, socialise and connect with the community. In an online survey conducted by DRC Advocacy, 67 per cent of people with disability said transport barriers meant they missed out on doing things they would like to do.[90]

Under human rights conventions and discrimination laws, Australian Governments must work towards improving public transport access and meeting the Disability Standards for Accessible Public Transport 2002. While Victoria is required to provide a fully accessible public transport network by 2032[91], a plan has not been released in relation to how this goal will be achieved. There have been welcome investments to improve accessibility across Victoria‘s transport networks, however, progress remains slow and disappointingly, Victoria’s rail network operators also recently sought to extend exemptions for some aspects of the transport standards[92] pushing progress further down the line.

Accessible public transport is about both physical access to stations and vehicles, and the awareness and attitudes of transport staff. The Victorian Government and transport operators have made inroads to improving the accessibility of the network and fleet in recent years through upgrades and improvement works[93], however financial and logistical challenges have impeded the speed of works. Transport operators have also implemented staff training and customer service initiatives to improve inclusive practices.[94]

Unfortunately, experiences of exclusion and discrimination across the public transport network continue to be reported by our members, to complaints bodies[95] and in the media[96]. The Public Transport Ombudsman received a complaint every two days about accessibility in 2018-19[97]; however, given people are often reluctant to complain or do not know where to go, the true figure could be much greater.

As Victoria continues its “big build” across a range of infrastructure projects, we encourage the Victorian Government to leverage this opportunity to increase accessibility and inclusion. Work underway by Infrastructure Victoria to update its 30-year strategy[98] will also be crucial in demonstrating Victoria’s long-term commitments to inclusive approaches.

The investment in key projects, such as level crossing removals and new train station developments, present a rare and valuable opportunity to get it right from the start. We recommend the Victorian Government continues work to embed universal design approaches in all public developments and refurbishments, while also investing in the development of disability-specific infrastructure such as Changing Places facilities.

It is also important that there are transport options for Victorians who cannot use public transport, and for people living in areas with fewer transport options. More than one-third of Victorians with disability face difficulties or are unable to use public transport[99], and may instead use commercial passenger vehicles, including taxis and rideshare services, or community transport.

Through the transition to the NDIS, there have been a range of changes to how transport funding and assistance is provided. NDIS participants may be eligible for funding through their individual plan for transport[100], however in accessing this funding, they no longer receive the Mobility Allowance previously paid by Centrelink.[101] State-based initiatives like the Multi-Purpose Taxi Program, which provides discounted fares and covers lifting fees, will continue until longer term policy and funding agreements are resolved by governments.[102]

Training for drivers of commercial passenger vehicles is not mandatory or monitored, due to the dispersed nature of providers.

Transport challenges are even greater for people with disability in regional or rural communities, who often have to contend with unreliable or inaccessible public transport options or rely on very limited commercial passenger vehicles.

This highlights the important role of community transport. Community transport providers across Victoria support people with disability and older people to get to medical appointments, shop for essential supplies, socialise and connect to their community. The familiarity, safety and affordability of community transport is appreciated by many passengers who are often unable to use other forms of transport, including many who live in areas not serviced by public transport, taxis or rideshare services. The reach and capacity of community transport services is hamstrung by outdated and inadequate funding arrangements, despite growing demand for support, particularly during during COVID-19. Due to the pandemic, many community transport providers pivoted their services to help people access priority shopping hours and essential medical appointments safely, to deliver food and groceries, and to offer proactive and responsive support over the phone.

Transport issues and costs for people with disability are likely to have increased during the COVID-19 pandemic, as more people with disability choose socially distanced options to limit their exposure to the public. As the pandemic continues, and in the longer term, the Victorian Government, the Federal Government and the NDIA must work together to ensure people with disability can access safe and affordable transport options in their local community.

Education

Recommendations

• Include students with disability, families, carers, educators and advocates in the design and implementation of the new Disability Inclusion package.
• Ensure timely, targeted supports continue for students with disability through the transition to the Disability Inclusion package.
• Continue to fund infrastructure improvements and deliver state-based support programs to improve inclusion in early learning, primary, secondary and tertiary education settings.
• Improve the implementation of inclusion policies and procedures at a school level by introducing greater accountability measures and tools.
• Ensure children and young people with disability are supported to access education and additional supports during and beyond the COVID-19 pandemic.
• Include comprehensive units on disability rights, access and inclusion, designed and delivered by people with disability, as mandatory learning in all tertiary courses for future teachers and support staff.
• Continue to invest in professional development for educators, careers advisors and support staff on disability rights, inclusive practices, and strategies for developing and implementing tailored adjustments.
• Ensure social, emotional and vocational programs are available to all students in all settings, including excursions and camps, mental health support, sexual and reproductive health education, careers counselling and work experience.
• Work with the Federal Government to map and clarify service gaps and overlaps in learning environments, with the shared goal of reducing confusion and ensuring students and families can access the support they need.

Every student with disability has the right to access an inclusive, engaging and high-quality education. Educational experiences and learning outcomes have lifelong social and economic impacts for children and students with disability. All education settings – from early childhood and beyond – have a role to play in supporting students with disability to build their skills and confidence, explore their interests and pursue their aspirations. Learning opportunities and outcomes pave the way for each child’s future, and as stated in the Victorian Government’s Early Childhood Reform Plan, “if children start behind, they often stay behind”[103].

Children and students with disability face a range of barriers in accessing inclusive early learning and education. Inaccessible physical environments, a lack of supports, aids and equipment, discriminatory attitudes and a culture of low expectations all impact on learning experiences and outcomes.[104]

COVID-19 measures have also increased and or highlighted the challenges and inequities experienced by children with disability in accessing education.[105] There are growing concerns children and young people with disability who haven’t been able access and fully participate in remote learning, due to a lack of reasonable adjustments or in-home support, may be at greater risk of falling behind and disengaging from learning.

Despite operating under a range of conventions, laws and guidelines, some schools continue to turn students away by refusing or discouraging enrolment.[106] Once enrolled, students do not always receive adequate, targeted support, are often excluded from classroom and extra-curricular activities and are significantly impacted by bullying and discrimination[107], which impacts engagement and outcomes. Three-quarters of students with disability have difficulties at school related to their disability, including challenges with learning, fitting in socially and communication[108], and 97 per cent of students with autism experience educational restrictions[109]. One-third of Australian school students don’t receive any support or receive support but need more.[110]

Students with disability are at particularly high risk of being excluded from mainstream school due to behavioural issues[111] that often relate to insufficient support. Young people with disability are also over-represented in flexible learning settings, highlighting the need for individualised and tailored support in schools.

To truly make Victoria the Education State, we recommend the Victorian Government and the Department of Education and Training continue to build upon initiatives and programs that break down barriers and increase inclusion.  As part of its inclusive education agenda, the Victorian Government has invested in improving physical access to early learning centres and schools through targeted funding and updated building standards for universal design. The Education for All school policy framework implementation, improved work readiness support for students with disability, and professional development resources and training modules all aim to improve the capacity and consistency of school-level responses.

However, VCOSS and Empowered Lives members report these initiatives are not fully embedded or embraced on the ground, by principals, leaders and teachers within schools and across school communities. Too often it takes a ‘champion’ to promote action, or a student, family member, carer or advocate to agitate for change, when inclusive approaches should be standard practice.[112] Current and future teachers need specific and ongoing training on inclusive practice, including how to make reasonable adjustments.

The Victorian Government supports children and students with disability through a range of programs, including the Preschool Field Officer program and Kindergarten Inclusion Support in the early years, and the Program for Students with Disabilities for school-aged children.

We welcome the Victorian Government’s five-year $1.6bn investment in the Disability Inclusion package announced in the 2020-21 Budget. Through a new needs-based funding model, this funding will ensure more students are eligible for targeted support and that classroom and school-wide adjustments can be made. The five-year transition to the new approach, to be rolled out by geographic regions from mid-2021, will allow for a staged roll-out; however, five years is a long time in children’s learning and development.

It is vital that through the transition, students with disability receive timely support to participate in learning, and that student’s voices are heard and respected in the design and development of individual adjustments.

In addition to educational supports, VCOSS and Empowered Lives members report that many school-based programs, including mental health services, sexual and reproductive health education, careers counselling and work experience, are often not fully or equally available for students with disability, particularly in specialist school settings.

Students with disability need early, tailored support to foster their aspirations, explore career pathways, undertake work experience and plan for post-school transition.[113] Across vocational, applied learning and tertiary studies, students with disability should also be provided with additional support aligned to their goals and needs, including reasonable adjustments, accessible materials and work placement opportunities.

Under inter-governmental agreements, all levels of government have responsibilities to support students with disability in educational settings.[114] While the NDIS provides funding for individualised, personal supports related to a student’s disability, schools must provide reasonable adjustments to the curriculum, the built environment, learning assistance and inclusion support. In Victoria, just under 25,000 school-aged children and young people are NDIS participants.[115] The interface between Victorian and Federal funding streams and systems continues to present challenges for students, schools and families – challenges that have become more pronounced during COVID-19.[116] We urge all levels of government to work together to support the learning and development of children and young people with disability.

Employment

Recommendations

• Ensure the Victorian Government leads the way as an employer of choice for people with disability by developing career pathways, providing targeted employee supports and increasing efforts to reach public sector employment targets.
• Advocate to the Federal Government for fairer access to income support for people with disability and carers, including supplementary payments and temporary increases during the COVID-19 pandemic.
• Ensure new State Budget investments in skills development, employment support and job creation, developed to support COVID-19 economic recovery, are inclusive and accessible for people with disability.
• Build community and business awareness of the benefits of employing people with disability by developing and promote tools and resources.
• Develop accountable annual implementation plans to support the achievement of key outcomes in Getting to work: Victorian public sector disability employment action plan 2018–2025 and Every opportunity: Victorian economic participation plan for people with disability 2018–2020.

People with disability have a diverse range of skills, talents and experiences, and are loyal, reliable and productive employees.[117] Many businesses who employ people with disability report experiencing clear, positive benefits from stronger workplace morale to an improved skills set, better productivity and greater customer satisfaction.[118] In addition to enabling financial independence, employment provides a sense of purpose and identity, and supports people to build social and community connections.

In Australia, people with disability are twice as likely to be unemployed as people without disability, are more likely to work part-time and want more hours, and spend significantly more time looking for a job.[119] Poor school experiences, including a lack of support, discriminatory attitudes, and limited access to careers education and work experience, impact aspirations and employment pathways for people with disability. When engaging with employers, people with disability face a range of barriers, including discriminatory attitudes and behaviours underpinned by low awareness and understanding.[120] These challenges are even greater for women with disability, who are less likely to be employed than men, have lower incomes, often work in precarious or casual roles and may experience both gender and disability biases.[121] Volunteering, which can be a gateway to future career opportunities, is also more difficult to access for people with disability.[122]

Almost half of Australians with disability live in poverty, and government support is the main source of income for 42 per cent of people with disability of working age.[123] Eligibility for the Disability Support Pension (DSP) has been tightened in recent times, and people who do receive the DSP have been excluded from receiving the COVID-19 supplement.[124] This is despite the already high living costs of many people with disability[125], and increasing expenses in response to the pandemic, including added delivery costs for essential items, greater use of private travel for essential appointments and higher utilities bills[126].

While workforce participation for people with disability in Victoria has increased over the past decade, as acknowledged in the Department of Jobs, Precincts and Regions Strategic Plan, more needs to be done to boost employment, particularly for people outside Melbourne.[127] The economic impact of COVID-19 is likely to have a lasting impact on employment opportunities for many Victorians. It is crucial that all employment and training initiatives developed by the Victorian Government are inclusive and accessible for people with disability. This includes opportunities to skill or reskill in growth industries, such as community services, access Jobs Victoria employment supports (eg. Jobs Advocates, counsellors and mentors), and job creation through social procurement and wage subsidies.

As one of the state’s largest employers, the Victorian Government is well-placed to lead and deliver best practice in inclusive employment. The Getting to work: Victorian public sector disability employment action plan includes a 6 per cent target by 2020, increasing to 12 per cent by 2025.[128] This target will only be achievable if it is supported by actions including comprehensive policies, practices and initiatives. The Victorian Government must strengthen and promote career opportunities for people with disability, ensure environments are accessible and build an inclusive workplace culture.

We welcome the release of Every opportunity: Victorian economic participation plan for people with disability 2018–2020 and its range of actions to drive change within government and across businesses and the community. Despite a range of supports being available for employers to support people with disability, including for reasonable adjustments, many businesses do not know about these initiatives, are concerned about the time, complexities and costs involved or lack ‘disability confidence’.[129]

Through both the Getting to work and Every opportunity plans, the Victorian Government has outlined a clear agenda for change – now it’s time to take action and achieve real outcomes.

Strengthening disability inclusion under the Disability Act 2006 (Topic 6)

Recommendations

• Facilitate separate detailed conversations and engagement opportunities with people with disability, carers and families, disability advocates and community organisations to ensure appropriate time and attention is provided to thoroughly review the Disability Act 2006.
• Lead further cross-government collaboration to review and enhance safeguarding and complaints mechanisms and legislation to ensure comprehensive protections are in place to support and protect Victorians with disability.
• Support the Office of the Public Advocate Community Visitors program to provide support for more Victorians by reviewing and responding to all recommendations in their 2019-2020 annual report and previous annual reports.
• Recognise and resource disability advocacy organisations and self-advocacy organisations as a vital part of Victoria’s safeguarding eco-system, by delivering increased and ongoing funding to meet demand and improve the reach of individual advocacy support and capacity-building programs.
• Promote the establishment of a single independent oversight body for complaints and monitoring systemic issues.
• Refresh Disability Action Plan guidelines to improve consistency and promote the use of shared, consistent themes and outcome domains.

As the funding and regulatory landscape has changed significantly in recent times across Victoria and Australia, it is timely for the Victorian Government to thoroughly review Disability Act 2006 in close consultation with people with disability.

Many of the issues and ideas raised through consultation on the State Disability Plan are likely to have implications for the Disability Act 2006; however, it’s important that the Victorian Government facilitates separate, detailed conversations and engagement opportunities to ensure any law changes or additions reflect the needs of the community and the sector. Particularly in light of the COVID-19 pandemic, additional time must be provided and innovative engagement strategies must be designed and implemented.

While technical legislative amendments have been made by the National Disability Insurance Scheme Transition Amendment Act 2019, as deeper review of the Disability Act 2006 must work to:

• ensure adequate and appropriate safeguards and supports are available for all Victorians with disability, including in mainstream and universal services
• reduce red tape and confusion and remove any gaps, by clarifying the roles and responsibilities of State and Federal Governments and departments
• embed national agreements and policies agreed by the Council of Australian Governments (COAG) Disability Reform Council and future iterations of the National Federation Reform Council
• respond to the findings, recommendations and decisions of a range of national inquiries and initiatives, including the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

At 387 pages, the Disability Act 2006 is substantial in both its length and significance. The review of the Disability Act 2006 must allow sufficient time for meaningful consultation and community education. People with disability, carers and families, disability advocates and community organisations will all have varying experiences and perspectives on the issues and concerns that could be addressed through changed or stronger legislation. Any opportunities to participate in a review should be widely promoted across the community and designed to be safe and accessible in the context of COVID-19.

Quality and safeguards

The Disability Act 2006 underpins a range of quality and safeguarding measures and complaints bodies in Victoria. Over the course of the transition to the NDIS, new and additional strategies, regulations and authorities have been introduced at a state and national level, including:

• Victoria’s zero tolerance approach to abuse, formalised in the Disability Amendment Act 2017 and a Code of Conduct for disability workers
• the 2018 Victorian disability abuse prevention strategy and the state-based Disability Worker Exclusion List
• the introduction of the Victorian Disability Service Safeguards Bill 2018 to strengthen safeguards through a workforce commission and registration
• the July 2020 launch of the worker complaints service through the Victorian Disability Worker Commission
• the national NDIS Quality and Safeguards Framework, which underpins the operation of the NDIS Quality and Safeguards Commission, the NDIS Code of Conduct and the Intergovernmental Agreement on Nationally Consistent Worker

Screening for the NDIS.

Additional workforce measures, including the national NDIS Worker Screening Check and database[130] and the worker registration component of the Victorian Disability Worker Regulation Scheme[131] have been delayed due to COVID-19 and will commence in 2021.

While we welcome measures which extend and enhance protections for people with disability, the current regulatory environment is becoming increasingly complex to understand and navigate.[132] The layering and duplication in many instances is still necessary to maintain coverage across all contexts as the NDIS transition continues; however, this patchwork approach will not be sustainable or effective in the long term.

The Victorian Government has led the way in introducing additional and stronger safeguards for people with disability. As noted in the Disability Services Commissioner’s 2019-20 annual report, “We need to remain vigilant about maintaining relevant safeguards so no person with disability falls through the safety net”.[133]

VCOSS encourages the Victorian Government to maintain its leadership role by driving further cross-government collaboration to protect the rights and safety of people with disability, and to attract, support and retain a skilled workforce to deliver quality services.

This work must be informed by ongoing, meaningful engagement with people with disability, families, carers, advocates and the disability support sector. The interim report and final findings of the Disability Royal Commission will also be crucial in shaping the future of quality and safeguarding measures and all related legislation.

Community Visitors

Community Visitors are independent volunteers who are empowered by the Disability Act 2006 to visit people with disability in a range of residential settings. A range of state and national inquiries and reports have noted the critical value of Community Visitors[134], who work to promote and safeguard the rights of people with disability through individual support and by highlighting systemic issues.

During their unplanned and planned visits, Community Visitors talk to residents about the support they receive and any issues they have, observe the environment and quality of care, make enquiries and inspect documents. They document their observations, issues and best practice, and raise concerns with relevant authorities for further investigation.

Over 2019-2020, 400 active Community Visitors made 4142 visits across Victoria.[135] The collective reports and observations of Community Visitors reflected in the 2018-2019 Annual Report reveal some concerning trends, including:

• a 36 per cent increase in reports of abuse, neglect and assaults, including between co-residents
• NDIS access, eligibility and planning issues
• challenges accessing incident reports, especially as visits were not able to happen in-person due to the pandemic.[136]

The scope and nature of Community Visitor programs varies widely across service types and jurisdictions in Australia.[137] The Senate inquiry into disability abuse in 2015 recommended that Community Visitor programs could be more effective through funding for greater capacity and improved training.[138]

Through the transition to the NDIS and related regulatory change, the remit of Community Visitor programs has changed and in some cases expanded. A national review found that there remains a role for Community Visitors in the NDIS-funded environment, in both supporting people with disability and boosting visibility and information on systemic issues.[139] It also proposed further collaboration between governments and regulators to achieve consistency in the coverage, scope and operations of Community Visitor programs.

With limited funding and a team of experienced volunteers, the Community Visitor program delivers crucial support to people with disability in ‘closed’ environments. The face-to-face nature of the Community Visitors model is vital and resource-intensive. The Office of the Public Advocate has called for greater resources to undertake more visits, refresh its service model and support digital reporting for a number of years.[140]

During the COVID-19 pandemic, the Community Visitors program is one of many that has had to suspend in-person services and explore new ways of working.[141] A grant of $78,000 from the Victorian Government enabled a trial of remote safeguarding during the pandemic, using phone and video visits – while not a substitute for face-to-face visits, this funding ensured people could continue to be supported.[142]

To the support the continuation and development of the Community Visitors program in Victoria, we encourage the Victorian Government to review and respond to the recommendations made by Community Visitors in their 2019-20 annual report, to ensure support is available to more Victorians with disability during the pandemic and beyond.

Independent disability advocacy

Independent disability advocacy protects and advances the rights and interests of people with disability. Disability advocacy and self advocacy organisations work alongside people with disability to understand their human and legal rights, communicate their needs and have their needs met.[143] In addition to individual support, advocates also play a crucial role in identifying and reporting systemic issues to improve sector practice and help prevent future cases of violence, abuse or neglect.

Advocacy helps all parties to solve problems and encourages self-advocacy by supporting people to understand and exercise their rights. Disability advocacy has been consistently recognised by previous inquiries as an important safeguard to help prevent and report abuse[144], particularly for people who are afraid or face difficulties in raising issues or making complaints[145].

Despite the importance of disability advocacy in protecting and promoting the rights and safety of people with disability, its role is not well understood and services are chronically under-funded. In Victoria, there are more than one million people with disability[146], yet the Victorian Disability Advocacy Program (VDAP) is only funded to support 2000 individual disability advocacy clients per year[147]. While Victorian advocacy organisations have been supported by funding increases and extensions, the drip-fed and short-term nature of this funding makes it difficult for organisations to deliver sustainable services and retain experienced staff. The introduction of the NDIS has also increased demand for advocacy support, as people navigate a new, complex and confusing system.

Disability advocacy must be valued, prioritised and fully funded to ensure the Victorians with disability can access tailored, timely advocacy support. The Victorian Government should deliver certainty and stability to the advocacy sector, and in turn people with disability, by engaging organisations on long-term agreements, increasing core funding to meet existing demand and emerging need, and providing additional resources for innovation and partnerships.

Complaints

The complaints avenues for Victorians with disability and their support networks are complex depending on the type, nature and location of the issue. As identified by the Victorian Ombudsman in 2015, despite areas of good practice:

“…oversight arrangements in Victoria are fragmented, complicated and confusing, even to those who work in the field. As a result there is a lack of ownership of the problem and little clarity about who is responsible for what. In some areas there are overlapping responsibilities between agencies and no clear understanding of the boundaries.”[148]

In some ways, this fragmentation has increased through the introduction of the NDIS as responsibilities have shifted and new reforms have been introduced, including workforce safety screening and registration schemes:

• The Disability Services Commissioner handles complaints about Department of Health and Human Services (DHHS) in-kind or funded disability services and Transport Accident Commission funded services[149]
• The NDIS Quality and Safeguards Commission handles complaints about NDIS-funded services[150]
• The new Victorian Disability Worker Commission handles complaints about individual disability workers, regardless of the funding source[151]
• Consumer Affairs Victoria handles complaints about specialist disability accommodation providers[152]
• The Commonwealth Ombudsman handles complaints about the National Disability Insurance Agency (NDIA) and Centrelink
• The Victorian Equal Opportunity and Human Rights Commission (VEOHRC) handles complaints about disability discrimination[153]
• The Complaints Resolution and Referral Service handles complaints about federally-funded disability employment services (DES), disability enterprises and disability advocacy services[154].

There are a range of additional authorities people with disability may be directed to, including Victoria Police for crimes and the Victorian Ombudsman for a range of public services. While most complaints bodies promote a ‘no wrong door’ approach, the confusion of seeing so many doors may in itself deter people from pursuing an issue or a complaint. People with disability, their families and carers must have trust and confidence in these systems – that their rights will be upheld, that complaints and disclosures will be taken seriously, and that there will be an appropriate response.

Through the ongoing Disability Royal Commission, it is likely that the complexity of complaints mechanisms and the vital role of advocacy will be explored in further detail. We encourage the Victorian Government to be responsive to the findings of the Disability Royal Commission and to take a collaborative approach to creating real, lasting change.

At a state-level, and as part of its role on the COAG Disability Reform Council and future iterations of the National Federation Reform Council, the Victorian Government must advocate for greater clarity and further funding for disability advocacy and complaints management for people with disability. We recommend an approach that includes:

• additional resources for disability advocacy organisations and self-advocacy organisations to provide individual assistance and capacity-building programs
• the establishment of a single independent oversight body, that is resourced to support people with disability to raise and pursue complaints and who monitor and report on systemic issues.

Disability Action Plans

Under the Disability Act 2006, public sector bodies are required to develop Disability Action Plans to reduce barriers, promote inclusion and change attitudes. While public sector bodies must report on the progress of their Disability Action Plans in their annual reports[155], the scope and depth of reporting is inconsistent and there is no central source of insights and data on outcomes.

Existing resources for developing Disability Action Plans, available on the Department of Health and Human Services website[156], are now 11 years old. Establishing clear guidelines for developing Disability Action Plans in a consistent way is a crucial enabler of consistent, meaningful measurement.

As part of work to connect and cascade the next National Disability Strategy and the State Disability Plan, we recommend the updated resources are developed to support disability action planning. Guidelines could be used by a range of government bodies, local councils, businesses and non-government organisations to design plans aligned to a common framework, measure their individual achievements, and feed into a collective assessment of progress towards key outcomes in Victoria and Australia.

Over time, as Disability Action Plans transition to a common structure, reporting requirements for specific entities under the Disability Act 2006 could also be strengthened. Accountability and outcomes measurement are explored further in the final section of this submission.

Measuring what matters

Strengthening the State Disability Plan outcomes framework (Topic 3)

Recommendations

• Engage people with disability to co-design meaningful outcomes measures and indicators.
• Further embed rights and recognition focused measures and indicators across all areas of the State Disability Plan outcomes framework.
• Continue collaborative work to explore and address gaps in disability-related data at departmental, State and Federal levels to inform better outcomes measurement.
• Strengthen reporting requirements for Disability Action Plans for government departments and local councils to improve accountability and outcomes measurement.
• Explore the development of an online reporting tool, aligned to the State Disability Plan outcomes framework, to enable collective progress and achievements across government, business and the community to be measured and evaluated.

For the State Disability Plan to drive better outcomes, affect genuine change and promote accountability across government and the community, it must include clear and measurable benchmarks and indicators. VCOSS and Empowered Lives members often share concerns that government strategies, while well intentioned, do not regularly or efficiently report on meaningful outcomes. Public and community trust and confidence in the State Disability Plan is crucial in supporting both its development and delivery.

There is some room for improvement in identifying meaningful measures and indicators, and in increasing the evidence-base, frequency and impact of outcomes reporting. Outcomes measurement should be used to understand where we are now, highlight progress, identify emerging priorities and draw attention to areas for improvement.

To ensure the plan is measuring what matters most, we recommend the Victorian Government takes a co-design approach to reviewing and designing outcomes measures and indicators.

The diverse experiences and knowledge of people with disability, including their experiences of state-funded services and systems, should shape both the development and measurement of the State Disability Plan. The State Disability Plan should also be well integrated with and connected to the vision, outcome areas and measurement framework of the next National Disability Strategy.

The Consultation Paper proposes to add or strengthen outcomes measures regarding freedoms, rights and recognition of people with disability.[157] We welcome the extended focus on these themes, which reflect and promote the human rights of people with disability. The realisation of freedom and agency for people with disability, the opportunity to take risks, and meaningful recognition, spans all areas of life. Victorians with disability, like all Victorians, access or are impacted by a range of state-based policies, program and initiative. Therefore, we recommend that a government-wide focus on rights and a deep understanding of inclusion is broadly embedded and evaluated across all departments and entities.

Smart, collaborative reporting

Annual reports on the progress of Victoria’s State Disability Plan outline the achievements driven by the Plan each year. The tabling of these annual reports in the Victorian Parliament demonstrates the Victorian Government’s commitment to accountability.

The current format of the annual reports draw attention to specific government-funded initiatives over the course of the year and share narratives that illustrate the impact of programs. As noted in the 2018 report, there are data gaps that limit the measurement of change and progress. There are long-standing data collection issues across intersecting services and how they record the existence and prevalence of disability, including child protection[158], justice[159] and family violence[160]. In other data sets, the metrics collected focus on funding-based data, rather than outcomes-based measures.

We are supportive of the extensive work underway to explore and address data gaps in the State Disability Plan outcomes framework[161] and the ongoing development of the Victorian Government outcomes architecture[162].

We recommend the Victorian Government continues to explore a range of avenues to boost the evidence base for measuring short and long-term outcomes for people with disability. We also encourage the Victorian Government to actively engage in national initiatives to improve data collection and consistency, such as the development of the National Disability Data Set[163].

Better and smarter outcomes measurement could be strengthened by the development of a consistent framework for Disability Action Plans. For example, the Department of Health and Human Services (DHHS)[164] and the Department of Education and Training (DET)[165] have aligned the structure of their Disability Action Plans to the pillars and outcomes framework of the State Disability Plan. This alignment means both departments would be well-placed to assess their impact and feed into a collective measurement of government-wide outcomes.

Businesses and non-government organisations are increasingly developing their own Disability Action Plans to set goals, measure progress, identify areas for improvement, and benchmark themselves against their peers. Through initiatives like the Australian Network on Disability’s Access and Inclusion Index, participating organisations can assess and compare their disability confidence across 10 key areas.[166]

As outlined earlier in this submission, there is great potential through the next State Disability Plan to boost the value and accountability of Disability Action Plans. Clear guidelines that encourage governments, departments and organisations to develop their Disability Action Plan using consistent pillars and outcome areas would support smarter, deeper assessment of collective impact across Victoria. Legislation could also be strengthened to increase the reporting requirements of government departments and local councils. An online reporting tool to aggregate data from businesses, community groups and other entities could also be developed to provide a more comprehensive view of outcomes across Victoria. Through the digital collation of data from a range of sources, powerful visualisations could be created like the implementation progress tracker for the 227 recommendations of the Victorian Royal Commission into Family Violence.[167]

Building back better

Responding to COVID-19 (Topic 7)

Emergencies and disasters magnify and intensify the existing barriers and issues experienced by people with disability. Recent emergencies, locally and worldwide, have placed a spotlight on how governments, services and systems respond during times of crisis. As outlined by the UN’s Policy Brief on a Disability-Inclusive Response to COVID-19:

“Even under normal circumstances, persons with disabilities are less likely to access health care, education, employment and to participate in the community. They are more likely to live in poverty, experience higher rates of violence, neglect and abuse, and are among the most marginalised in any crisis-affected community. COVID-19 has further compounded this situation, disproportionately impacting persons with disabilities both directly and indirectly.”

We welcome the State Disability Plan’s focus on ensuring Victoria’s COVID-19 recovery, and future planning for and responses to emergencies, is inclusive, accessible and equitable for people with disability.

VCOSS and Empowered Lives members shared our recommendations for change in:

• A joint statement: Supporting Victorians with disability during COVID-19 restrictions
• A submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability – Emergency Planning and Response Issues Paper: Equitable and inclusive emergency planning and responses

We provide these resources as our response to Topic 7.

[1] VCOSS, Empowered Lives, accessed 27 November 2020.

[2] VCOSS, Equitable and inclusive emergency planning and responses: VCOSS submission to Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability – Emergency Planning and Response Issues Paper, August 2020.

[3] Australian Department of Social Services, Right to opportunity: Consultation report to help shape the next national disability strategy, December 2019.

[4] Ibid.

[5] Victorian Government, Consultation for state disability plan 2021-2024, December 2019, p.9.

[6] UN Special Rapporteur on the rights of persons with disabilities, Embracing diversity, accessed 27 November 2020.

[7] VCOSS, Walk alongside: Co-designing social initiatives with people experiencing vulnerabilities, 2015.

[8] Australian Department of Industry, Innovation and Science, Hidden in plain sight: Building an understanding of how the Australian Public Service can unlock community expertise to improve policy, programmes and service delivery, 2017.

[9] Victorian Government, Transfer of disability accommodation and respite services, accessed 27 November 2020.

[10] Victorian Government, Ending Family Violence: Victoria’s Plan for Change, 2016.

[11] Deakin University, Accessible and Inclusive Geelong Project: Video, accessed 27 November 2020.

[12] Wellington Shire Council, Sample video from Disability communication e-learning module, accessed 27 November 2020.

[13] J Thomas, J Barraket, CK Wilson, I Holcombe-James, J Kennedy, E Rennie, S Ewing, T MacDonald, Measuring Australia’s Digital Divide: The Australian Digital Inclusion Index 2020, RMIT University and Swinburne University of Technology for Telstra, September 2019.

[14] Victorian Government, Victoria’s draft Public Engagement Framework, accessed 27 November 2020.

[15] Victorian Health and Human Services Building Authority, Universal design, accessed 27 November 2020.

[16] Victorian Government, State Disability Plan: Annual Report 2018, August 2019, p.13.

[17] Victorian Government, Digital Standards, accessed 27 November 2020.

[18] S Wales and D Grindlay, ‘Horsham Aquatic Centre snubbed in sports rorts saga and disability advocates want answers’, ABC News, 6 February 2020, accessed 27 November 2020.

[19] A Ford, ‘Why is there still no disability access at the train station?’, The Courier, 21 January 2019; A Ford, ‘Ballarat train station to get access upgrades, but still not up to disability standard’, The Courier, 15 May 2019, accessed 27 November 2020.

[20] Victorian Department of Premier and Cabinet, Victoria’s draft Public Engagement Framework, accessed 27 November 2020.

[21] AIHW, People with disability in Australia: Disability discrimination, September 2019.

[22] VEOHRC, Annual Report 2019-20, December 2020.

[23] Hon Luke Donellan, ‘Victoria Launches Australia’s First Autism Campaign’, Media release, 17 February 2020.

[24] D Warr, H Dickinson, S Olney et. al., Choice, Control and the NDIS: Service users’ perspectives on having choice and control in the new National Disability Insurance Scheme, University of Melbourne, May 2017.

[25] D Tune, Review of the NDIS Act 2013: Removing red tape and implementing the NDIS Participant Guarantee, December 2019.

[26] NDIA, A framework for Information, Linkages and Capacity Building, 2015.

[27] VCOSS, Delivering on the promise: a better and fairer NDIS, Submission to the Review of the NDIS Act…, October 2019.

[28] NDIA, Submission to Productivity Commission Issues Paper on NDIS Costs, March 2017, p.56.

[29] Productivity Commission, Review of the National Disability Agreement 2019: Key points, accessed 27 November 2020.

[30] Victorian Department of Education and Training, Disability Action Plan 2018-2021, August 2018, p.15.

[31] L Taylor, P Brown, V Eapen, S Midford, J Paynter, L Quarmby, T Smith, M Maybery, K Williams and A Whitehouse, Autism Spectrum Disorder Diagnosis in Australia: Are we meeting Best Practice Standards?, 2016.

[32] Amaze, Position Statement: Autistic Women and Girls, March 2018; M Blakemore, G Robertson, S Hansford, T Richardson, J Dalcombe, S Smith and N McCaffrey, Multiple and intersecting forms of discrimination against autistic women: For the attention of the Special Rapporteur on Violence against Women.

[33] NDIA, COAG Disability Reform Council Performance Report – National 30 June 2019, 2019.

[34] Mavromaras et al., Evaluation of the NDIS: Final report, National Institute of Labour Studies, February 2018, p.29.

[35] Ibid., p.54.

[36] Victorian Government, Victoria Carers Strategy 2018-2022, July 2018.

[37] Senate Community Affairs References Committee, Out of home care, August 2015, p.265.

[38] AIHW, Child protection Australia 2017–18, March 2019, p.51.

[39] Disabled People’s Organisations Australia and National Women’s Alliances, The Status of Women and Girls with

Disability in Australia, November 2019.

[40] Ibid.

[41] Domestic Violence Victoria, Submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability: Criminal Justice System Issues Paper, April 2020.

[42] Office of the Public Advocate, Community Visitors Annual Report 2018-2019, September 2019, p.18.

[43] The Lookout, COVID-19 and Family Violence, accessed 27 November 2020.

[44] AIHW, People with disability in Australia: Health, September 2019.

[45] Ibid.

[46] AIHW, People with disability in Australia: Difficulties accessing healthcare services, September 2019.

[47] Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Health care hearings, Sydney, accessed 27 November 2020.

[48] International Disability Alliance, IDA’s letter to World Health Organisation in response to the #COVID19 pandemic, accessed 27 November 2020.

[49] World Health Organisation, Disability considerations during the COVID-19 outbreak, accessed on 27 November 2020.

[50] Australian Human Rights Commission, Pandemic requires comprehensive response for Australians with disability, accessed 27 November 2020.

[51] Australian Department of Health, Management and Operational Plan for People with Disability: Australian Health Sector Emergency Response Plan for COVID-19, April 2020.

[52] Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Report – Public hearing 5 – Experiences of people with disability during the ongoing COVID-19 pandemic, 30 November 2020.

[53] Victorian Government, State Disability Plan Annual Report 2018, August 2019.

[54] Council of Australian Governments, COAG Disability Reform Council – 9 October 2019 Communique, October 2019.

[55] Victorian Government, Submission to the Royal Commission into Victoria’s Mental Health Services: SUB.5000.0001.0001, July 2019, p.5.

[56] Ibid., p.8.

[57] Productivity Commission, Draft report: Mental Health, October 2019, p.31.

[58] NDIA, Psychosocial disability in the NDIS, June 2019.

[59] Ibid.

[60] Productivity Commission, Inquiry report: Mental Health, November 2020, Action 17.2, p.850.

[61] N Towell and M Cunningham, ‘$700 million dollars guaranteed to Victorians with disabilities following NDIS agreement’, The Age, 17 June 2019; A Cooper, ‘Unconvicted, Indigenous, disabled man is free after 543 days in jail’, The Age, 18 June 2018.

[62] Council of Australian Governments, COAG Disability Reform Council – 28 June 2019 Communique, June 2019.

[63] NDIA, Specialist Disability Accommodation Provider and Investor Brief, April 2018, p.5.

[64] GM Bishop, J Zail, L Bo’sher and D Winkler, Young People in Residential Aged Care (2017 – 2018) A Snapshot, Summer Foundation, August 2019.

[65] L Milligan, ‘Emergency intervention to remove disabled man left in prison after NDIS providers refused to care for him’, ABC News, 10 November 2017; E Baker, ‘’He was returned to prison’: Detainees fall prey to NDIS process’, The Canberra Times, 9 June 2018; C Schelle, ‘NDIS failing jailed Vic woman: report’, SBS, 14 December 2017.

[66] B Judd, D Olsberg, J Quinn, L Groenhart and O Demirbilek, Dwelling, Land and Neighbourhood Use by Older Home Owners, AHURI Final Report No.144, 2010, p.282.

[67]Consumer Affairs Victoria, Discrimination in renting, accessed 27 November 2020.

[68] Australian Building Codes Board, Accessible Housing Options Paper Consultation Report, April 2019, p.57.

[69] NDIA, Home modifications explained, accessed 27 November 2020; Access for All, How is assistive technology funded outside the NDIS?, accessed 27 November 2020; DHHS, Home modifications in public housing during transition to the NDIS: Operational guidelines, October 2018; Consumer Affairs Victoria, Tenants installing fixtures and altering the rental property, accessed 27 November 2020.

[70] Office of the Public Advocate, Community Visitors Annual Report 2018-2019, September 2019.

[71] I Wiesel and D Habibis, NDIS, housing assistance and choice and control for people with disability, AHURI Final Report No.258, 2015.

[72] NDIA, A Home for Living: Specialist Disability Accommodation Innovation Plan, October 2019.

[73] L Healey, Voices Against Violence: Paper 2: Current Issues in Understanding and Responding to Violence Against Women with Disabilities, WDV, OPA and Domestic Violence Resource Centre Victoria, 2013, p.47.

[74] Ibid.

[75] Victorian Government, State Disability Plan Annual Report 2017, June 2018, p.21.

[76] UN Convention on the Rights of Persons with Disabilities, Article 13 – Access to justice.

[77] Australian Human Rights Commission, Equal Before the Law: Towards Disability Justice Strategies, February 2014.

[78] VEOHRC, Beyond doubt: The experiences of people with disabilities reporting crime – Research findings, 2014, p.6; M Nixon, People with disability are more likely to be victims of crime – here’s why, The Conversation, 22 February 2020, accessed 27 November 2020.

[79] AIHW, People with disability in Australia: Violence against people with disability, September 2019.

[80] Civil Society CRPD Shadow Report Working Group, Disability Rights Now 2019: Australian Civil Society Shadow Report to the United Nations Committee on the Rights of Persons with Disabilities: UN CRPD Review 2019, July 2019, p.24.

[81] Disabled People’s Organisations Australia and National Women’s Alliances, The Status of Women and Girls with

Disability in Australia, November 2019.

[82] Victoria Police, Australian-first police station awarded with Communication Assess Symbol, 18 November 2019, accessed 27 November 2020.

[83] Victorian Government, State Disability Plan Annual Report 2018, August 2019, p.18.

[84] Ibid.

[85] Victorian Legal Aid, Ten stories of NDIS ‘Thin Markets’: Reforming the NDIS to meet people’s needs – Submission to the Department of Social Services and the National Disability Insurance Agency’s NDIS ‘Thin Markets’ Project, June 2019.

[86] Victorian Government, State Disability Plan Annual Report 2018, August 2019, p.7.

[87] Victorian Government, State Disability Plan Annual Report 2017, June 2018, p.11.

[88] Commercial Passenger Vehicles Victoria, Multi Purpose Taxi Program, accessed 23 December 2020.

[89] J Rachele, I Wiesel and E van Holstein, Making Australia’s most liveable city more inclusive, accessed 27 November 2020.

[90] DRC Advocacy, Transport For All, October 2018.

[91] Australian Government, Disability Standards for Accessible Public Transport 2002, Part 5.1.

[92] Australian Human Rights Commission, Exemption application: Australian Railways Association, accessed 28 September 2020.

[93] Victorian Government, Submission to the 2017 Review of the Disability Standards for Accessible Public Transport 2002, 2019.

[94] Yarra Trams, Accessibility, accessed 27 November 2020.

[95] Public Transport Ombudsman, Accessibility Bulletin 2019, April 2019.

[96] J Topsfield, ‘Sometimes train drivers forget you’: How to make Melbourne more accessible for people with disabilities, The Age, 27 September 2019, accessed on 4 April 2020; AAP, Guide dog discrimination regular: survey, The Canberra Times, 24 April 2019, accessed 27 November 2020.

[97] Public Transport Ombudsman, Annual Report 2018-2019, October 2019.

[98] Engage Victoria, Help us update Victoria’s 30-year Infrastructure Strategy, accessed 23 December 2020.

[99] ABS, Disability, Ageing and Carers, Australia: Victoria, 2018, Table 19.3 Persons with disability aged 5 years and over, living in households, disability status, by use of public transport – 2018, proportion of persons, February 2020.

[100] NDIS, Transport funding¸ accessed 27 November 2020.

[101] Department of Social Services, Mobility Allowance, accessed 27 November 2020.

[102] Council of Australian Governments, COAG Disability Reform Council – 9 October 2019 Communique, October 2019.

[103] Victorian Department of Education and Training, Early Childhood Reform Plan, May 2017, p.11.

[104] E Jenkin, C Spivakosky, S Joseph and M Smith, Improving Educational Outcomes for Children with Disability In Victoria: Final report, June 2018; K Cologon, Towards inclusive education: A necessary process of transformation. Report written by Dr Kathy Cologon, Macquarie University for Children and Young People with Disability, October 2019; Children and Young People with Disability, Time for change: The state of play for inclusion of students with disability: Results from the 2019 CYDA National Education Survey, October 2019; Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Education and learning hearings, Townsville, accessed 27 November 2020.

[105] N Campenella, Parents call for more support to ensure no disabled student is left behind amid coronavirus pandemic, ABC News, 7 April 2020, accessed 27 November 2020; E Kinsella, With no PPE to reduce coronavirus risk, some Victorian specialist schools haven’t been able to open, ABC News, 6 April 2020, accessed 27 November 2020.

[106] See reference 108.

[107] Ibid; VEOHRC, Held Back; the experience of students with disabilities in Victorian schools: Main findings, 2012.

[108] AIHW, Disability in Australia: changes over time in inclusion and participation in education, 2017.

[109] Amaze, Position Statement: Education, March 2018.

[110] AIHW, People with disability in Australia: in brief, accessed 27 November 2020.

[111] J Watterson & M O’Connell, Those who disappear: The Australian education problem nobody wants to talk about, University of Melbourne, Melbourne Graduate School of Education, Report No.1, 2019.

[112] VCOSS, The right standards for change: VCOSS submission to the 2020 Review of the Disability Standards for Education 2005, September 2020.

[113] Children and Young People with Disability, Submission to the Education Council’s Review of Senior Secondary Pathways Into Work, Further Education and Training, December 2019.

[114] COAG, Principles to Determine the Responsibilities of the NDIS and Other Service Systems, November 2015.

[115] NDIS, Participant data tool – Visual display from the September 2019 Quarterly Report, accessed 27 November 2020.

[116] VCOSS, Submission to The Education State: Lessons from Remote and Flexible Learning, June 2020.

[117] Victorian Government, Every opportunity: Victorian economic participation plan for people with disability 2018–2020, 2018, p.7.

[118] Australian Network on Disability, Disability Confidence Survey Report, 2017; Australian Human Rights Commission and Deloitte Australia, Missing out: The business case for customer diversity, February 2017.

[119] AIHW, People with disability in Australia: Employment, September 2020.

[120] Australian Human Rights Commission, Willing to Work: National Inquiry into Employment Discrimination Against

Older Australians and Australians with Disability, 2016, p.6.

[121] Disabled People’s Organisations Australia and National Women’s Alliances, The Status of Women and Girls with

Disability in Australia, November 2019, p.35.

[122] J Buckingham and D Perry, Literature review of the inclusion of people with disability in volunteering for the Victoria ALIVE project, 2019.

[123] Civil Society CRPD Shadow Report Working Group, Disability Rights Now 2019: Australian Civil Society Shadow Report to the United Nations Committee on the Rights of Persons with Disabilities: UN CRPD Review 2019, July 2019, p.39.

[124] AFDO, Increase Disability Support Pension now to deal with COVID-19, accessed 27 November 2020.

[125] J Li, L Brown, H La, R Miranti and Y Vidyattama, Inequalities In Standards of Living: Evidence for Improved Income Support for People with Disability, NATSEM, September 2019.

[126] People with Disability Australia, People with Disability and COVID-19, June 2020.

[127] Victorian Government, Department of Jobs, Precincts and Regions Strategic Plan 2019-2013, p.42.

[128] Victorian Government, Getting to work: Victorian public sector disability employment action plan 2018–2025, October 2018.

[129] Kantar Public, Building Employer Demand Research report: Commissioned by the Australian Government Department of Social Services, October 2017; Council of Small Business Organisations Australia (COSBOA), 89 Degrees East and Truth-Serum, Making it Easier for Small Business to employ people with disability, Prepared for the Employment Reform Working Group of the National Disability and Carers Advisory Council (NDCAC), September 2018.

[130] NDIS Quality and Safeguards Commission, Provider Alert: National worker screening arrangements, accessed 27 November 2020.

[131] Victorian Disability Worker Commission, Disability worker registration is delayed to 1 July 2021, accessed 27 November 2020.

[132] Office of the Public Advocate, Community Visitors Annual Report 2018-2019, September 2019, p.21.

[133] Disability Services Commissioner, 2019-20 Annual Report, December 2020, p.10.

[134] Victorian Ombudsman, Reporting and investigation of allegations of abuse in the disability sector: Phase 1 – the effectiveness of statutory oversight, June 2015; Parliament of Victoria Family and Community Development Committee, Inquiry into abuse in disability services, Final report, May 2016; Australian Senate Community Affairs Reference Committee, Violence, abuse and neglect against people with disability in institutional and residential settings…, Final report, November 2015.

[135] Office of the Public Advocate, Community Visitors Annual Report 2019-2020, December 2020.

[136] Ibid.

[137] Australian Senate Community Affairs Reference Committee, Violence, abuse and neglect against people with disability in institutional and residential settings…, Final report, November 2015, p.139; Department of Social Services and Council of Australian Governments Disability Reform Council, Community Visitor Schemes Review, December 2018, p.8.

[138] Australian Senate Community Affairs Reference Committee, Violence, abuse and neglect against people with disability in institutional and residential settings…, Final report, November 2015, p.147.

[139] Department of Social Services and Council of Australian Governments Disability Reform Council, Community Visitor Schemes Review, December 2018.

[140] Office of the Public Advocate, Annual Reports 2018-2019, 2017-2018, 2016-2018.

[141] Office of the Public Advocate, COVID-19: A message to People with Disability from Victoria’s Public Advocate, Colleen Pearce – 25 March 2020, accessed 27 November 2020.

[142] Office of the Public Advocate, Community Visitors Annual Report 2019-2020, December 2020.

[143] Disability Advocacy Resource Unit, What is disability advocacy?, accessed 23 December 2020.

[144] Victorian Ombudsman, Reporting and investigation of allegations of abuse in the disability sector: Phase 1 – the effectiveness of statutory oversight, June 2015; Australian Senate Community Affairs Reference Committee, Violence, abuse and neglect against people with disability in institutional and residential settings…, Final report, November 2015; Victorian Ombudsman, Reporting and investigation of allegations of abuse in the disability sector: Phase 2 – incident reporting, December 2015; Parliament of Victoria Family and Community Development Committee, Inquiry into abuse in disability services, Final report, May 2016.

[145] Ibid. Victorian Ombudsman, Reporting and investigation of allegations of abuse in the disability sector: Phase 1, June 2015, p. 86; Reporting and investigation of allegations of abuse in the disability sector: Phase 2, December 2015, p.18.

[146] ABS, 4430.0 – Disability, Ageing and Carers, Australia: Summary of Findings, 2018.

[147] Victorian Government, Victorian Budget 20/21 Service Delivery: Budget Paper 3, p.249.

[148] Victorian Ombudsman, Reporting and investigation of allegations of abuse in the disability sector: Phase 1 – the effectiveness of statutory oversight, June 2015, p.4.

[149] Disability Services Commissioner, Thinking about making a complaint, accessed 27 November 2020.

[150] NDIS Quality and Safeguards Commission, How to make a complaint about a provider, accessed 27 November 2020.

[151] Victorian Disability Worker Commission, Complaints and notifications, accessed 27 November 2020.

[152] Consumer Affairs Victoria, Specialist disability accommodation, accessed 27 November 2020.

[153] VEOHRC, Disability discrimination, accessed on 27 November 2020.

[154] JobAccess, The Complaints Resolution and Referral Service, accessed 27 November 2020.

[155] Victorian Government, Disability Act 2006, Part 4, Section 38.

[156] Victorian Department of Health and Human Services, Disability action plans, accessed 27 November 2020.

[157] Victorian Government, Consultation paper on for state disability plan 2021-2024, December 2019, p.13-14.

[158] AIHW, Child protection in Australia: 2018-2018, 2019, p.14.

[159] Victoria Police, Accessibility Action Plan 2013-2017, p.8, 10.

[160] Domestic Violence Victoria, Submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability: Criminal Justice System Issues Paper, April 2020.

[161] Victorian Government, State Disability Plan Annual Report, 2018, p.50-51.

[162] Victorian Government, Outcomes reform in Victoria, accessed 27 November 2020.

[163] Australian Government, Australian Digital and Data Council Communique – 6 September 2019, 2019.

[164] Department of Health and Human Services, Disability Action Plan 2018-2020, 2018.

[165] Department of Education and Training, Strategy – Disability Action Plan 2018-2021, 2018.

[166] Australian Network on Disability, Access and Inclusion Index, accessed 27 November 2020.

[167] Victorian Government, Family Violence Reforms – The 227 Recommendations, accessed 27 November 2020.

Ensuring children and people with disability are protected from harm is paramount. Governments and organisations have a responsibility to protect and uphold the safety, wellbeing and rights of children, young people and people with disability.

Worker screening initiatives act as a protective and preventative mechanism, by prohibiting or deterring people from working in roles where they present an unacceptable risk of harm.

The introduction of a nationally consistent approach to National Disability Insurance Scheme (NDIS) worker screening, and the establishment of a shared framework for conducting checks on both NDIS workers and people who work with children, are welcome initiatives. However, VCOSS is disappointed to see the regulatory impact statement (RIS) adopts a narrow definition of the problem that focuses primarily on financial impacts, options to negate costs to government, and meeting the minimum requirements of the national policy for NDIS worker screening.

To ensure the proposed regulations serve to enact and strengthen Victoria’s zero tolerance approach to abuse of people with disability, we recommend the Department of Justice and Community Safety (DJCS):

• conducts further analysis to present a fairer fee structure for volunteers who support people with disability
• undertakes further engagement, consultation and communication with impacted stakeholders, in light of awareness and engagement challenges during COVID-19.

Review fee fairness and coverage

Recommendation

• Further examine and clarify screening requirements for volunteers who support people with disability, within NDIS providers or through ILC-funded programs.
• Model a fee structure that ensures the costs of volunteer checks for supporting children and people with disability are offset by the fees collected for paid staff checks.

Around one in 10 Victorians with disability are supported by the NDIS.[1] People with disability who are not eligible for the NDIS may access a range of community services, delivered by paid staff and volunteers from large community services organisations through to small, local volunteer-led groups.

Volunteer-involving programs complement the support provided by NDIS-funded services. They are especially valued by people with disability who are not eligible for an individual NDIS funding package.

Based on the definitions in the Intergovernmental Agreement for nationally consistent worker screening for the NDIS, it is our understanding workers in paid and unpaid roles who support people with disability through a registered NDIS provider would be required to undergo an NDIS check. The Intergovernmental Agreement also states Commonwealth employees, NDIA-contracted organisations, state-funded organisations and services, and advocacy services may also be required to comply with the national policy on NDIS worker screening through funding agreements.

These definitions present a compliance challenge for volunteer-involving organisations who:

• are registered NDIS providers, but provide additional or complementary support for people with disability that is not funded by the NDIS (for example, volunteer companionship programs, community transport)
• are not registered NDIS providers, but work extensively with NDIS participants (for example, volunteer citizen advocacy for people with disability, community visitors)
• deliver volunteer-driven programs for people with disability with the support of multiple funding sources.

It is important that the regulations to promote safety are fit-for-purpose for volunteer-involving programs given that:

• Volunteers contribute more than $58m worth of benefits to Victorians[2], including vital and valued support for Victorians with disability
• Volunteers support people with disability to access information, socialise, advocate for their rights, participate in the community and build lasting, trusted connections and friendships – often in ways that paid staff cannot
• Delivering volunteer-involving programs is not free – organisations incur initial costs for recruitment, screening and induction, and ongoing costs for training, mentoring and supervision, and volunteers themselves are also often out-of-pocket[3]
• The transition to the NDIS and the Information Linkages and Capacity-Building (ILC) grant funding has adversely impacted the provision of volunteer-involving programs for Victorians with disability, including changes to, and loss of,
  block funding[4].

We note that the RIS proposes that no volunteer checks be available for volunteers who support NDIS participants; these checks will incur the same fee as an employee check.[5]

A fee structure that places additional cost imposts on volunteers and volunteer programs that support people with disability may discourage prospective volunteers and threaten the viability of already-stretched community programs.

We recommend DJCS conducts further analysis to explore the impact of the regulations on volunteers who support people with disability in a range of contexts, and models a fee structure that does not discourage volunteers from supporting Victorians with disability.

Engage, consult and communicate with all stakeholders

Recommendations

• Develop a clear, timely and realistic implementation plan to engage all stakeholders in the introduction of NDIS checks.
• Clarify and communicate the roles and responsibilities of different Victorian and Commonwealth safeguarding and screening mechanisms.
• Develop tailored and accessible communications about NDIS checks for people with disability, workers, volunteers and organisations.

The introduction of the NDIS check from February 2021 comes on the back of, and in the midst of, a challenging time for people with disability, carers and families, disability workers, service providers, volunteers and volunteer-involving organisations.

The implementation of nationally consistent screening checks will have varying impacts for different organisations and services. For example, some organisations who provide NDIS-funded services, particularly large organisations that provide a wide range of community services for children and families, may already have policies in place requiring all workers to have a WWC check, which will extend their time to transition their workforce to the NDIS check. Whereas other support providers without similar organisation-level policy settings, who employ workers and volunteers who do not have or require a WWC check, will have six months from February 2021 to ensure their workforce has NDIS checks.

The diversity and complexity of the community sector in implementing these changes cannot, and should not be, underestimated. While we wholeheartedly welcome the additional level of screening and protection for NDIS participants that will be made available under the Worker Screening Bill 2020, we hold concerns about the implementation of the proposed regulations due to:

• Limited communication and engagement with organisations, workers, volunteers, NDIS participants and their support network about the introduction of NDIS checks

• The short timeframes for all parties to provide feedback to the RIS process, and to prepare for implementation from February 2021

• A lack of clarity about how the new NDIS checks will intersect or overlap with other state-based safeguarding mechanisms, including:
  • the ongoing role of the Disability Worker
    Exclusion Scheme
  • the Victorian Disability Worker Commission, and
  • the Disability Worker Regulation Scheme and the launch of worker registration from July 2021

• Potential coverage gaps and financial impacts for volunteers and volunteer-involving organisations who support people with disability (as outlined earlier)

• The administrative and resourcing impacts for organisations to communicate with staff, review and assess workforce impacts and plan for transition; costs not considered in the RIS nor remunerated by NDIS funding

• The dual impacts of COVID-19 fatigue and reform fatigue which may increase difficulty in implementing change.

Without clear, accessible and timely guidance and advice, paid and volunteer workforces and prospective workers will also face difficulties in:

• preparing for the implementation of NDIS checks
• understanding the roles of different safeguarding mechanisms and bodies
• ensuring they are compliant with all required checks.

NDIS participants, particularly those who self-manage their plan or engage a plan manager, also need to know more about NDIS checks, how they will work and how they will be able to access the NDIS Worker Screening Database.

__________________________________

This submission was prepared by Rhiannon Wapling and authorised by VCOSS CEO Emma King. For enquiries please contact Deborah Fewster at deborah.fewster@vcoss.org.au

[1] NDIA, Quarterly Performance Dashboard, 30 September 2020, p.3; ABS, Disability, Ageing and Carers, Australia: Summary of Findings, 2018.

[2] Volunteering Victoria, State of Volunteering Report, 2020.

[3] Ibid.

[4] K McVilly, G Dodevska and D Newton, Value Added: Volunteer-Supported Services and the Challenge of the NDIS, University of Melbourne and Interchange Inc., 2019.

[5] DJCS, Regulatory Impact Statement: Worker Screening Regulations 2020, November 2020, p.17.

VCOSS is the peak body for social and community services in Victoria. VCOSS supports over 40 Victorian disability advocacy organisations to undertake collaborative systemic advocacy under the banner of the ‘Empowered Lives’ campaign.

We welcome the opportunity to provide input to this inquiry.

Second Review of the Disability (Access to Premises – Building) Standards 2010 (the Premises Standards)

Accessible premises, places and spaces open doors to a range of social and economic opportunities for people with disability and older people. Accessibility enables inclusion, dignity and independence in daily life, provides equitable choices and options, and supports health, wellbeing and community connectedness.

In Victoria, under state-based legislation and the Premises Standards, it is unlawful for public places to be inaccessible for people with disability, however, many places remain fully or partly inaccessible. Consultation for the next National Disability Strategy found more than 40 per cent of survey respondents believe accessibility in the community has not changed, or has become worse, over the past five years.[1] Poor accessibility also impacts older people, people experiencing temporary mobility restrictions due to illness or injury, and parents or carers using prams, and can limit their participation, independence and choices in the community.

The 2016 review of the Premises Standards identified a range of recommendations, including the need to improve connections between built environment standards, increase understanding and awareness of the Premises Standards across different stakeholder groups, and strengthen governance and data collection. While the Australian Government accepted or noted many recommendations in its response to the 2016 review, it is unclear what has been actioned and achieved since this time.

The second review should have a strong focus on the accountability and impact of the Standards, and should meaningfully engage people with disability, older people, families, carers and advocates to ensure key issues and barriers to building accessible, inclusive and age-friendly cities and communities are addressed.

Listening to and learning from lived experience

Engaging people with disability, older people, their families and carers, and advocates early on in the review process will ensure the review focuses on the experiences, insights and priorities of people with lived experience. People with disability, older people and their allies need to have trust and confidence in the power and scope of the Premises Standards to drive change, remove access barriers and eliminate discrimination.

The scoping survey, which seeks to hear diverse range of voices and perspectives, is a welcome starting point for the second review. We recommend the Department of Industry, Science, Energy and Resources builds upon this approach to comprehensively, and meaningfully, assess the impact and effectiveness of the Standards.

The second review should:

• Widely promote consultation stages
• Provide fair, equitable and accessible opportunities for people with disability, older people, families, carers and advocates to participate in all aspects of the review process
• Engage people with disability in all expert advisory panels or committees related to the review
• Give stakeholders confidence that the review will drive meaningful improvements, including increased compliance with the Standards.

The review is commencing in a time of immense change, challenges and complexity across the community and the policy and government landscape. The COVID-19 pandemic has been disruptive, difficult, and devastating for all Australians, and has particularly impacted people with disability, older people, families and carers, advocates and community organisations.

During the pandemic, several significant government inquiries and consultation processes have continued, including the disability and aged care Royal Commissions, the development of the next National Disability Strategy and state-based plans, and reviews of other DDA-related standards. The regulatory impact statement (RIS) on the proposal to include minimum accessibility standards for housing in the National Construction Code (NCC) was also recently released for comment.

The stress, anxiety and additional pressures of the pandemic – particularly for Victorians who experienced sustained lockdown measures – is likely to have prevented many people and organisations from sharing their lived experiences and expertise through these inquiries and processes. Wherever practical and possible, the Premises Standards review should seek to coordinate and collaborate with existing government review and inquiry processes to reduce duplication, mitigate consultation fatigue and ensure the insights people have shared in other forums is valued and elevated.

Key areas of focus

The review should seek to assess the impact and effectiveness of the Premises Standards in driving change and increasing access and inclusion across Australia.

Compliance with and enforcement of the Premises Standards, like other Standards under the Disability Discrimination Act 1992 (DDA), relies on people with disability and their allies knowing about, and advocating for, their rights. Under current arrangements, people with disability must lodge a formal complaint about inaccessible places and spaces for any remedial action to be considered. Complaints can be addressed to a range of parties, and while resolution can occur on an individual level, these complaints usually do not feed into or effect systemic change.

The Premises Standards are dense, technical, and likely to be inaccessible for many people with disability and the wider community. This presents a barrier to understanding, and in turn, impacts people’s capacity to make a complaint.

Since the last review of the Premises Standards, the Australian Human Rights Commission received on average just under 80 premises-related complaints each year.[2] Considering 4.4 million Australians live with disability, it can safely be assumed the current compliance measures are not well known, effective or fair.

People with disability can also make complaints about public premises directly to builders, local council, state, territory and federal governments, however it is not clear who is ultimately responsible for hearing complaints, monitoring systemic issues and ensuring appropriate action is taken.

To ensure the second review contributes to action and change, the review should:

• Examine and report on progress towards the recommendations identified in the 2016 review, particularly in relation to
  • awareness and understanding
  • measurement and reporting,
  • compliance and accountability
• Consider the fairness and effectiveness of current compliance and complaints measures, and recommend options to increase and strengthen measures
• Assess the social, health and economic benefits of universal design and improving access to public spaces for all Australians
• Identify areas of good practice, as well as settings and environments that do not meet the Premises Standards or community expectations
• Explore whether improving or expanding the Premises Standards, or implementing other approaches, would be likely to achieve positive outcomes
• Identify opportunities to harmonise relevant Standards and legislation to improve coverage, awareness and compliance.

Additionally, the review process should embed scope for responsiveness to the findings and recommendations of:

• the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability
• the Royal Commission into Aged Care Quality and Safety
• the next National Disability Strategy
• consultation regarding the proposal to include minimum accessibility standards for housing in the National Construction Code (NCC).

[1] Department of Social Services, Consultation report – to help shape the next National Disability Strategy (beyond 2020), December 2019.

[2] AHRC, Complaint Statistics, 2019-20, 2018-19, 2017-18, 2016-17, accessed 12 November 2020.

__________________________________

This submission was prepared by Rhiannon Wapling and authorised by VCOSS CEO Emma King.

For enquiries please contact Deborah Fewster at deborah.fewster@vcoss.org.au

By Connie Jones

This story is part of the My Corona series. We’re publishing personal stories about the pandemic, life in and after lockdown, and Victorians’ hopes and fears for the future. We have changed Connie’s name at her request. 

For a lot of people what’s gotten them through lockdown is knowing that it will end. But for some of us, this is life and it does not end.

I’ve had chronic illness for a long time. When I look back I can’t identify a point in my life when I didn’t have pain and fatigue, although it wasn’t until I was in my late twenties that I realised being in pain all the time wasn’t actually normal.

I’ve got a beautiful wife, Sara – we’ve been together since we were 21 – and we have a little kid, Alex, who’s eight. They’re my reason for everything, my reason to get up in the morning.

I’ve been a teacher for most of my professional life, although my health has interfered with that a lot. I used to be a secondary teacher but I had to take some time away from it, although I was still writing educational resources and creating educational videos.

For the last two years I’ve been doing my masters of primary teaching. I’m really passionate about education, but I have a lot of anxiety about whether I’m going to be able to physically do what’s required of me to pursue that career. Teaching is a job that takes all of you, and all of me is not enough sometimes, with all of the health stuff that goes along with it.

When you’re sick all the time and in pain all the time, it’s really hard to not be depressed and anxious all the time. The thing I find the most challenging is the mental health side of dealing with chronic physical illness.

It’s not linear. Some days I’m at peace with it and other days I’m really mad about it.

All of that emotional stuff, I think a lot of people were feeling that in the pandemic. People were realising Oh, I can’t do my job, I don’t have the things in my life that give me purpose and my sense of identity and my sense of connection with the world.

All of those things that make us human – a lot of people have found how depersonalising and anxiety-creating it is to not have that stuff.

I’m hoping that having been in lockdown will give people a bit of personal experience, a way to understand what it’s like for people with disabilities – how we live all the time. And that for some people it will create empathy. That’s what I’m hoping and what other people I know who are either disabled or love someone who’s disabled are hoping.

I think for a lot of people what’s gotten them through lockdown is knowing that it will end. Knowing we just have to get to a certain number of cases or we just have to get to November and this will be over and it will be okay. That’s the only thing that’s been getting them through without going insane.

For some of us, this is life and it doesn’t end.

At the moment my health is declining and I’m not leaving the house very much, while other people are going back out into the world.

I’m feeling a little bit like I had all these people with me in lockdown – I had my family with me in a very literal sense, but I had my friends with me in a figurative sense. We were kind of all in it together for the first time ever. And now everyone’s going back to their lives and I’m feeling quite alone again in a way that’s adding another layer to the mental health challenges.

I’m quite comfortable with dissonant emotions coexisting. I’m really happy for my friends who run small businesses and for my kid who gets to go back to school. I’m genuinely one hundred per cent thrilled for them.

But sitting right next to that is that sense of being sad that I’m by myself again. And that I’m feeling left behind. I don’t think those two things are mutually exclusive.

I was talking to my wife about my health. She said I don’t seem physically worse to her, and I explained that’s because for the last few months I haven’t had to go anywhere – my life has been entirely at home, contained and controllable and manageable. I haven’t had to go to the supermarket, which sometimes is all I can manage in a three-day period. I haven’t had to go to campus for uni; I haven’t had to navigate moving through the world, and that’s a huge part of what makes my life hard.

She had a bit of an aha moment, she was like, Oh, oh I see. And it’s funny because she knows the intricacies of my health situation; she often knows what I need better than I do. I think it goes to show that when you’re living that embodied experience of disability, the world really does look so different to you. And it’s very hard to communicate that to other people.

sitting right next to that is that sense of being sad that I’m by myself again. And that I’m feeling left behind.

I’m sad that everyone had to experience lockdown. I know that there’ll be long-term mental health and anxiety issues that people will have to process, so I’m not happy that it happened.

But I hope that people can take those negative experiences and think, some people have to live like this all the time and I now have a greater insight into how hard that is. So the next time they vote, or read an opinion piece about the NDIS, or do anything related to people with disabilities, I hope they’ll have a new insight into what we might need. And the world might become a little bit more compassionate.

VCOSS CEO Emma King presented to the Inquiry on 10 March 2021. These are her opening remarks.

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We all know that education transform lives. A good education can put somebody on a path to success and happiness. A bad experience can do the opposite.

‘Good educations’ come in many forms. There is no one ‘right way’ for a person—any person—to learn. But there are some key qualities and characteristics that are required.

Educational settings must be inclusive. They must be easy to access, and accessible for everybody. They must be flexible, supportive, and person-centered. In many ways, Victoria’s TAFEs are world leading.

They have a strong focus on equity and diversity, and provide an important pathway for people with a disability.

This is important context for any comments we make here today – from VCOSS’s perspective, we are starting with a very solid foundation. 

Could our TAFE system be more inclusive, easier to access, more flexible, more supportive and more person-centred? Yes, it could. 

But I need to emphasise: it’s about building from strength. 

I’ll explain our position in more detail shortly. But first, let’s reflect on why it matters…

Our educational institutions should look and be as diverse as the communities they serve. They should have people from all backgrounds, from all income brackets, and with all abilities.

When they aren’t diverse in this manner, two things happen:

1. People miss out.

   People miss out on the transformation I referenced earlier. They miss out on the ability to learn, to improve, and to thrive, to get a job, to earn a wage. They miss out on the opportunity to be the best they can be.

   And let’s be specific here. When I say ‘they’, I mean the people who are already starting from behind. People with difficulties at home, or no home at all. People with little money. People with health challenges, including mental health challenges. And, yes, people with disabilities.

2. The second thing that happens when our educational institutions let us down, is that society as a whole misses out.
   
   We don’t get the full participation in society of those who were denied a good education. We don’t get their wisdom or insights, their perspectives, their experiences and their contributions. Our workplaces, our TV screens and our parliaments are then denied a certain richness. We all lose.

People with disability already face significant barriers to education and employment. We’ve long known why this is.

Too many educators are simply uncomfortable with disability. It scares them. They’re not trained for it. Many wrongly assume people with disabilities aren’t up to the task. This can take the form of either outright discrimination, or the so-called “soft bigotry of low expectations”.

The proverbial ‘too hard basket’ is overflowing with applications for jobs and training opportunities, penned by people with disabilities.

Barriers are also created when educational institutions fail to provide the right supports for a person to learn. “Reasonable adjustments” are supposed to be made for students who need them — but we know this doesn’t always happen.

Often learners aren’t even actively engaged or consulted about their learning needs. We also fail people when we don’t provide the correct oversight and monitoring, which would allow us to know when something is wrong.

The numbers tell the story:

People with disability are twice as likely to be unemployed in Victoria, and;

About half of all young people with disability are living off Commonwealth income support, and that number is rising.

But we’re not here today to be negative. If we look at TAFE specifically, we are doing a lot right. I said earlier that Victoria’s TAFE system is world class.

Our ‘Free TAFE’ policy is the envy of other jurisdictions (and has been copied by many).

The system may not be perfect, but that just means we have opportunities to make it better.

When we get the chance during questions, we’d like to tell you about the Community Traineeship Pilot Program. This program is the result of a partnership between VCOSS and Jobs Victoria. At its core is a comprehensive, learner-focused structure of support.

It’s not designed to stop people ‘falling through the cracks’. It’s designed to ‘get rid of the cracks’, and put a stable floor underneath every learner.

The results have been nothing short of amazing. The average retention rate is 70%. In some groups, 90% of trainees finished. This compares to a national average of 56% for similar courses. Trainees have also reported decreasing anxiety, and increasing levels of wellbeing and resilience.

So what’s needed to make our system better?

We need to listen to what individual learner are telling us: about what’s working, what’s not, and how well their needs are being met.

We need to make sure the right help is provided to learners, at the right time.

We need flexible wrap-around supports for all students, and these must be easy to access. This could be a youth or support worker, or access to financial assistance.

And we need better disability supports at TAFE, including for learners who have a diagnosis, and those who don’t.

This support needs to be proactive, tailored and flexible.

What we are talking about is transformational change. 

We are already on this journey.

What we propose will cost money now, and save money later.

It will take time.

It will require a shift in attitudes, a lifting of aspirations, and a comprehensive government response.

It will also require a whole of community effort, to boost opportunities for learners and workers with a disability.

But it will be worth it.

Because if ‘we all lose’ when we get this wrong, then ‘we all win’ when we get it right.

Thankyou.

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VCOSS submission to the Victorian Parliament’s Inquiry into access to TAFE for learners with disability.

Access to high-quality education can transform lives. But all too often education systems do not provide the opportunities and supports learners with disability need to thrive.

Our workplaces and education settings should be as diverse as the communities they represent, but this can only happen if the education systems that provide people with opportunities to dream big are inclusive, accessible, and are able to meet the needs of individual learners.

TAFE provides a strong focus on access and equity by providing a breadth of foundational courses and offering a range of support services, however, there is an opportunity to be more flexible, more person-centred and for supports to more comprehensively ‘wrap around’ people and address barriers to participation and attainment.

This submission draws on the insights and expertise of a representative sample of trainees, TAFE teachers, youth workers and other stakeholders involved in the Community Traineeship Pilot Program (CTPP), a traineeship model developed by VCOSS, funded by Jobs Victoria, and currently implemented in Melbourne’s south-east and north. These lived experience perspectives, together with VCOSS’s policy insights, highlight opportunities to make TAFE more accessible and inclusive for learners with disability. In doing so, this submission shines a light on aspects of the current system that present barriers to engagement and retention.

What we are talking about is transformational change. It will require a shift in attitudes, a lifting of aspiration, and a comprehensive response by government and across the education and training system (including, but not limited to education and training providers), and the wider community in order to boost opportunities for learners with disability.

The challenge should not be under-estimated. People with disabilities confront significant, entrenched barriers to access and inclusion. Initiatives to improve awareness and understanding of disability and, crucially, the rights of people with disability will be required, alongside significant investment that enables learners with disability the opportunity to dream big and follow the education and employment pathway they choose.

The Community Traineeship Pilot Program

The Community Traineeship Pilot Program (CTPP), managed by VCOSS and funded through Jobs Victoria, supports young people experiencing barriers to labour market participation to undertake a Certificate IV in Community Services alongside paid employment, while supporting community service organisations to host traineeships and meet their future workforce needs.^[1]

This program is not designed specifically for learners with disability, however, as the program supports its fourth group of young people, anecdotal evidence suggests that a significant proportion of trainees who have engaged in this program have a disability or mental illness.

A key feature of the program is a comprehensive, learner-focused structure of support, designed to foster collaboration between a range of key stakeholders to ensure learners don’t fall through the cracks. These key stakeholders include trainees, employers, Local Partner Organisations, youth workers, VET providers and teachers who all work together. The model also has a strong focus on peer support, which provides further scaffolding for the trainee. For example, trainees are brought together in classes run specifically for them.  A dedicated youth worker attends class with them, providing 1:1 youth work support to individual trainees, whilst assisting the whole group to build connection and mutual support.  This assists trainees to build their identity as part of a learning community.

“[The CTPP] does put me as a trainee at the centre. I think it’s a combination between a person centred approach and collaboration as everyone is working towards a common goal… I think with regards to it being student led, we’re often encouraged to give feedback to our youth workers and our TAFE teacher, to see what goals are needed, what we want to accomplish throughout the traineeship, what social gatherings we want to achieve” – Trainee One

The Community Traineeship Pilot Program achieved a retention rate of 80 per cent for the first group of participants, with more than 50 per cent gaining further employment with their employer upon completion of their traineeship. This compares very favourably to the national rate for non-trade traineeship retention, which is approximately 55 per cent.[2], The developmental evaluation of the CTPP has identified the flexible, high-support components of the model as a key success factor thus far.

The program highlights the immense value in making an upfront, proactive investment in support for learners who experience disadvantage – rather than waiting until there is a crisis – and sustaining that support for the duration of the course, flexing up and down depending on the individual needs of the learner.

The long-term costs of not providing this support are significant – not only impacting the performance of the vocational education and training system but contributing to growth in inequality (for example, trajectories into unskilled, low-paid, insecure work or even long-term unemployment for young people who may have disengaged from education and training without a qualification). [3] In other words, the cost of not providing this support is much too high for young people and society more broadly.

Method

To inform this submission, VCOSS consulted with three trainees from the CTPP, two TAFE teachers and one youth worker. These participants spanned three participant groups of the CTPP.

VCOSS takes a broad approach to the term disability, which includes experiences of mental ill health, and does not limit this term to a medical model.

All three trainees interviewed for this submission identified with having a disability or illness. Two trainees gave consent for their names and quotes from their interviews to be used in this submission. We refer to the trainees as ‘Trainee One’ and ‘Trainee Two’ to ensure other program participants are deidentified and to provide continuity of each trainee’s experience. One trainee did not provide consent for their name or quotes to be used. We do not differentiate between TAFE teachers.

VCOSS’s aim is to amplify the voices of voices of the trainees in this submission to highlight their experiences and needs.

VCOSS also consulted with members, and disability advocacy organisations who are part of the ‘Empowered Lives’ network of Victorian disability advocacy organisations.[4]

Recommendations

Supporting access to TAFE

• Advocate to state and national counterparts for a comprehensive review of the Disability Discrimination Act 1992 and Disability Standards for Education 2005, in consultation with people with disability, families, carers, advocates, human rights experts and lawyers to strengthen protections and supports for learners with disability
• Provide new, targeted funding for secondary schools and Learn Locals to address identified gaps in transition support for students who are interested in pursuing a TAFE pathway.
• Provide greater opportunities for students in secondary school to access meaningful workplace experiences, including when undertaking VCAL or VET in Schools.
• Invest in additional pathway support to assist learners with disability transition from a Certificate I to a higher certificate or employment pathway
• Capitalise on existing Learn Local education infrastructure to ensure TAFE is accessible in a greater geographical spread and in trusted environments
• Increase funding for teaching hours to embed practical skill development including employment skills and complex skills (sometimes referred to as ‘soft skills’) into the training curriculum. This could also be supported by a youth or support worker in the classroom
• Provide access to a youth or support worker in the classroom to support learners with disability to address and overcome complex barriers to engagement, challenges that may arise during their training, and to support communication with TAFE teachers and employers
• Invest in resources to create supported peer connections and networks to boost engagement and retention and support learner wellbeing

Accessibility of TAFE

• Invest in awareness campaigns across the TAFE community to boost understanding of disability and the rights of people with disability
• Include comprehensive disability specific training in all teaching qualifications and provide additional resources for staff to undertake mandatory ongoing disability related professional development. Training design and delivery should be co-designed with people with disability
• Create accessible feedback frameworks and processes to enable learners with disability to provide direct and continual feedback about their experiences and learning needs
• Invest in technological infrastructure and resourcing to ensure online learning platforms are accessible, with enough human resource capacity to enable staff to troubleshoot issues promptly
• In the absence of changes to the Disability Standards for Education 2005, consult with people with disability to create robust institutional policy frameworks that put the needs of learners at the centre
• Ensure learners with disability are proactively informed about their rights at the time of enrolment, and about services and assistance available to support their learning needs
• Provide learners with disability individual and tailored support and adjustments to boost engagement, retention and course completion
• Ensure learners with disability are meaningfully consulted about what a learning adjustment looks like, and provide adequate resources to ensure adjustments are implemented and provided within a reasonable maximum timeframe.
• Provide learners with disability access to pathways for support without needing a formal diagnosis or having to undertake extensive paperwork
• Implement structures to facilitate better collaboration between learners with disability, teachers and disability supports to ensure learning plans and learning needs are communicated in a timely way
• Boost retention by resourcing language, literacy and numeracy support that takes place in the classroom or is offered proactively
• Create a compliance system that ensures quality but does not overburden training providers
• Bridge the funding gap between the ‘volume of learning’ set by the Australian Qualifications Framework and the nominal hours the Victorian Government funds
• Remove demand-driven funding and ensure training providers have sufficient resources to support learner retention
• Provide TAFEs with additional resources to design and deliver training to smaller class sizes to ensure learners with disability get access to the in-class support they need
• Streamline the compliance requirements and invest in infrastructure and resources to enable TAFE teachers to collaborate with employers to design context specific assessments for learners undertaking a traineeship, apprenticeship or student placement

Employment

• Build the disability knowledge and confidence of employers through targeted training, support and resources

Supporting access to TAFE

High expectations and aspirations

RECOMMENDATION

• Advocate to state and national counterparts for a comprehensive review of the Disability Discrimination Act 1992 and Disability Standards for Education 2005, in consultation with people with disability, families, carers, advocates, human rights experts and lawyers to strengthen protections and supports for learners with disability

“I asked a trainee for their strengths, and they said, ‘I don’t know, I’m not good at anything’” – TAFE teacher

Students with disability are less likely to pursue studies at TAFE or university than their peers.[5]  Discriminatory attitudes are a key factor.  From a young age, many children with disabilities are exposed to a culture of low expectations, in the community and in education settings.  This can impact the learner’s confidence, engagement, attainment and aspiration.

Key issues include:

• Current legislative frameworks that protect the rights of learners with disability are not well known or understood, are insufficiently robust and are not supported by training or expertise across the teaching workforce.[6]

• As a consequence of low expectations, poor attitudes and assumptions, some students with disability have less agency and are presented with fewer options and choices.

• These factors can heighten the risk of learners with disability disengaging from education (students with disability are less likely to complete Year 12 or equivalent compared with their non-disabled peers[7]) and have an adverse impact on post-school outcomes. Young people with disability who responded to Mission Australia’s youth survey indicated they were less confident about their ability to achieve their post-school goals in comparison to young people without disability.[8]

Education settings need to embed a culture of high expectations and aspirations of learners with disability from early learning through to post-education and training. TAFE and training institutions have a role to play in ensuring the teaching workforce is adequately equipped with the knowledge and skills they need to better understand and support learners with disability. TAFEs also have a role to play in supporting employers to hold high expectations of learners who undertake workplace training as part of their studies. This in turn needs to be supported by stronger legislative frameworks and protections for learners with disability, underpinned by access to appropriate and resourced individualised supports including reasonable adjustments.

Transitions

RECOMMENDATIONS

• Provide new, targeted funding for secondary schools and Learn Locals to address identified gaps in transition support for students who are interested in pursing a TAFE pathway
• Provider greater opportunities for students in secondary school to access meaningful workplace experiences, including when undertaking VCAL or VET in Schools
• Invest in additional pathway support to assist learners with disability transition from a Certificate I to a higher certificate or employment pathway
• Capitalise on existing Learn Local education infrastructure to ensure TAFE is accessible in a greater geographical spread and in trusted environments

Access to TAFE begins well before a learner steps through the physical or virtual door of a TAFE or classroom. For many learners, senior secondary school is a key transition point into pursuing further education and training. For others, the transition is via their local Neighbourhood House or Learn Local Organisation.

VCOSS members and trainees shared diverse experiences about the transition to TAFE for learners with disability. The consensus is that more needs to be done to support learners at significant transition points.[9] Transition supports need to be more robust, flexible and adaptive to student’s needs, and deeply embedded in mainstream as well as specialist education settings for school-aged students and need to be clearer and appropriately resourced for post-school learners.

Transition from senior secondary school

Students with disability in secondary school need access to early, individualised and tailored support to explore post-school pathways that align with their interests and abilities. This transition planning should ensure that students have access to the school-based pathway that meets their immediate needs and aligns with their post-school goals. For some students this will be VCE.  For others, it will be VCAL, VET in Schools, School Based Apprenticeships and Traineeships (SBATs), or Structured Workplace Learning (SWL) opportunities.

Key transition issues for students with disability across mainstream and special education settings include:

• Lack of support for learners to develop their interests and aspirations

• Schools and teachers have insufficient knowledge, training and resources to support transition pathways

• Insufficient engagement with families and carers. Families and carers are an important source of advice for learners and provide important opportunities to workplace experiences through social and family networks. There can be closer relationships between education providers and the families and carers of learners with disability. This should include support for families and carers to boost their aspirations and expectations of learners with disability[10]

• There is insufficient knowledge and provision of reasonable adjustments in school, during workplace or training opportunities, and at TAFE

• Students with disability need greater access to opportunities to engage in work experience and placements, including through VET in Schools to support successful transitions[11]

• Employers, who provide work experience, placement, volunteer and paid work opportunities, may have limited understanding of disability and how to provide an accessible and inclusive environment. Employers need training and support to understand disability, reasonable adjustments and access to funding, and how to support the needs of individual students and workers.

Access to career activities and workplace experience can be vital to supporting students with disability pursuing post-school pathways and reasonable adjustments, and employer knowledge of individual learner’s needs should be paramount. Evidence shows “the fewer career development activities young people participate in, the more likely they are to be uncertain about their careers, disengaged from education or training, and unemployed”.[12] Access to these important opportunities may be harder for students with disability in rural and remote areas, who have an out-of-home care experience, whose first language is not English, or who may experience the compounding effects of racism.

TAFEs have a role to play in building strong networks and connections with schools to provide clear and accessible information to students with disability about career pathways, and to promote available wellbeing and disability specific supports. VCOSS has previously highlighted existing gaps in the Victorian Skills Gateway website that could assist with providing clearer information or pathways to prospective students.[13] Students with disability also need access to information and support via communication channels other than the internet including face to face or via phone.

Mainstream education settings

VCOSS members highlighted mainstream education settings generally perform poorly in supporting students with disability to engage in meaningful career activities and explore post-school options including TAFE. Key issues for secondary students with disability in mainstream settings include:

• Lack of training, awareness and understanding of disability by career practitioners and teaching staff which can contribute to a culture of low expectations and lead to poorer post-school outcomes

• Insufficient tailored and individualised support in navigating career pathways and opportunities, including access to meaningful workplace experiences or Structured Workplace Learning. This can lead to a mismatch in the student’s interests and a placement, which can contribute to poor experiences and a placement failing

• Unclear information about pathways particularly in relation to TAFE and the VET system, including for students undertaking VCAL and VET in Schools.

All students with a disability have a right to access and experience inclusive education in a mainstream school setting.  There is still an identified need for more career practitioner positions within mainstream schools to ensure students with disability get the tailored and individualised support they need.

Special education settings

VCOSS members report special education settings generally perform well in providing students with disability highly tailored and individualised support post-school, and that access to TAFE to undertake a Certificate I can be well-supported.

Key issues for students with disability in special education settings include:

• Knowledge of and confidence in employment and training pathways in mainstream settings among family and carers can be limited. It can be confronting and challenging for families, carers and students to consider options beyond supported settings, such as day services or supported employment. Families and carers need support to understand a range of mainstream pathways available to support their children’s aspirations and choice.

• There is mixed quality and outcomes for students undertaking a post-school Certificate I

• Further pathways and transition supports from Certificate I are significantly underdeveloped and insufficiently resourced. This can lead to students with disability ceasing further education and training upon the completion of a Certificate I and/or being insufficiently supported to transition into higher qualifications or mainstream settings including employment.

Post-school learners

Neighbourhood Houses and Learn Local providers are important parts of the community and training landscape and provide important pathways into TAFE. For example, learners who transition from Adult and Community Education offered by Learn Locals into TAFE complete courses at higher rates.[14]

Learn Locals offer pre-accredited and accredited training and provide community-based learning environments that can be more accessible for learners with disability who find larger institutions such as TAFEs overwhelming, or as a soft entry point into the education system. Local environments and smaller class sizes can help overcome barriers including for people with limited educational experience, those for whom English is not their first language, or those who have had poor experiences with education in the past.

As this inquiry explores the accessibility of TAFE for learners with disability, it is important to reflect on the need to sustain a variety of high-quality options for learners with disability that suit their needs and are available in their local communities.

Where TAFEs do not service particular geographical communities, or there is poor engagement of learners with disability, consideration should be given to encourage TAFEs to leverage existing education infrastructure provided by Learn Locals. This could extend the availability of TAFE in a greater geographical spread in a trusted environment.

While Neighbourhood Houses and Learn Locals are a well-established pathway into TAFE, there is an opportunity to strengthen the transition for learners with disability.  A learner’s journey is not always linear and providing individualised and intensive supports to guide these transitions are resource intensive. Learn Locals and TAFE should be adequately resourced to provide these supports and to strengthen partnerships to support transitions.

Life skills

RECOMMENDATION

• Increase funding for teaching hours to embed practical skill development including employment skills and complex skills (sometimes referred to as ‘soft skills’) into the training curriculum. This could also be supported by a youth or support worker in the classroom.

“The traineeship I think is helping me achieve most of my goals with regard to people handling skills, empathy, person centred approach, and collaborative approaches with role plays as well as part of our assessment” – Trainee One

Trainees and TAFE teachers interviewed for this submission emphasised the importance of supporting learners to acquire a range of practical skills to assist their participation and engagement in TAFE and the workplace, such as how to behave in a professional environment, tips and tricks on managing course work, and developing complex skills (sometimes referred to as ‘soft skills’) which are becoming increasingly important,[15] such as collaboration and adaptability.

There is growing momentum to increase “general capabilities, employability skills, soft skills or graduate capabilities” across the primary and secondary school curriculum[16] which will be especially important for students who do not have the social capital to develop these skills outside of a school environment through family networks or extracurricular activities.

Learners with disability who have not been supported to develop these skills prior to TAFE need support to develop these skills. For learners with disability who experience mental ill health, have not completed secondary education, have not been in education for an extended period, or are experiencing adversity, the need can be compounded. As one trainee shared, being out of the education system for a long time while managing adversity or something else going on in your life, without support, means it can take a long time to understand how to study.

Compliance and funding act as constraints for TAFE teachers to provide a more active role in supporting learners to develop these skills. In the CTPP, this barrier was overcome by providing trainees with access to a youth worker who could deliver more tailored individual support for the trainee.

“There’s more room for skill development in relation to self-confidence, resilience, timetabling, basic skills… There is no capacity to do that in our teaching role. We would need more hours allocated.” – TAFE teacher

Wrap around supports

RECOMMENDATION

• Provide access to a youth or support worker in the classroom to support learners with disability address and overcome complex barriers to engagement, challenges that may arise during their training, and to support communication with TAFE teachers and employers

Support from a youth worker or support worker can make or break a learning experience.

“I think [the CTPP] is a great program. I don’t think students would have come into the Cert IV [in Community Services] without youth workers and the extra support” – TAFE teacher

Having a youth worker alongside a teacher in a classroom has proven to support the education and wellbeing needs of young people facing complex barriers to education.[17]

Feedback from trainees, youth workers and TAFE teachers in the CTPP highlighted the importance of youth worker support, not only to support the development of practical skills, confidence and resilience outlined above, but to:

• support social activities and engagement with peers, including supporting trainees to become peer leaders in their own right
• be an advocate and support communication of any concerns or barriers to TAFE teachers and employers
• provide extra supports such as tutoring, filling in complex forms such as enrolment, or a request for reasonable adjustments
• support trainees to navigate and overcome challenges that arise during their traineeships, for example, mental ill health, family violence or homelessness
• facilitate access to the Flexible Wrap Around Support fund (available as part of the CTPP) that can be used to address barriers to engagement, for example by providing access to financial support, crisis housing, wellbeing and mental health services, medical needs, right down to buying new clothes to be able to attend work.

When youth workers are deeply engaged and available, trainees spoke about the difference this made and how it contrasted with previous TAFE experiences.

However, when youth workers are unable to be deeply engaged or able to provide clear communication channels to support a learner navigate challenges, it can lead to significant barriers in access and participation at TAFE.

“… ever since [my previous youth worker] stepped down and he stepped in, he’s had zero involvement… It can be hard to maintain that sense of being represented…” – Trainee Two

The CTPP is designed to foster collaboration between a range of key stakeholders with a dual goal of supporting young people experiencing barriers to labour market participation to undertake a community services qualification, while supporting community service organisations to host traineeships and meet their future workforce needs.[18] Though this program is not designed for young people with disability specifically, the wrap around support model is an example of inclusive, learner-centred design that supports learners with a range of needs or experiences. TAFE teachers and the youth worker identified a significant percentage of all three traineeship participant groups having a disability or mental ill health.

The collaborative model of the CTPP means TAFE teachers and employers are supported to understand and meet the needs of each specific group of trainees, through the support of a youth worker.

“We advocate on behalf of young people with their consent to talk to TAFE teachers or people in the background who might seem unapproachable at times, to let them know the young person is doing great in the program, they have the support around them to maintain engagement, and that things sometimes happen because it’s real life. It’s important to have those conversations with TAFE teachers to support their understanding about what that means in real life. We’re getting teachers to understand the cohort that they’re teaching as well. We’re working with young people who previously may not have been given an opportunity… so here are the things you need to be aware of” – Youth worker

“Youth workers in the classroom – I found that to be really good… In terms of emotional support potentially needed for the cohort but also they had that original relationship with them… so it was good to have them supporting the trainees emotionally and knowing when things were perhaps off, given I hadn’t built those relationships yet” – TAFE teacher

Good communication is key. One TAFE teacher highlighted the connection between having an engaged youth worker with great communication to learner outcomes.

Peer support

RECOMMENDATION

• Invest in resources to create supported peer connections and networks to boost engagement and retention and support learner wellbeing

“Last year in Year 12 I did an SBAT (School Based Apprenticeship and Traineeship) and found it different because with the youth workers [in the traineeship] they collaborate with all the trainees and we’re put into a separate course together. There are more social gatherings, online obviously [due to COVID-19], whereas TAFE last year… we didn’t have that opportunity for [facilitated] social interaction, we mostly just texted each other for assessments… with my class now everyone is engaged… This changes how I enjoy class and how I engage. It makes it better because people get to know each other better, we can have a bit of a laugh. A traineeship is more than just assessments, you need to have some joy as well. It also increases my productivity” – Trainee One

Peer support and connection is a vital part of a good learning experience and can support engagement and participation in education. As highlighted by Trainee One, the youth worker supported their social engagement which led to a more meaningful and enjoyable TAFE experience.

Another trainee spoke about the importance of the youth worker supporting and participating in a peer support class which provides an opportunity to build relationships, but also helps with processing and reflecting on coursework. Facilitating these relationships is a core part of the traineeship as reflected by one of the youth workers:

“We work on creating social peer groups… so young people are sustainable in their own learning long-term. We want independent learners. We want them to be peer leaders in their own right” – Youth worker

Social connectedness is an important factor in maintain engagement and wellbeing in education settings. VCOSS members report young people with disability may disengage from education based on poor experiences such as discrimination, bullying and low expectations that can begin from as early as kindergarten.

A 2019 Mission Australia report found that young people with disability experienced higher rates of concern and stress than their non-disabled peers over a range of areas including:

• coping with stress (49.9% compared to 44.5%)
• mental health (45.5% compared to 32.4%)
• school or study problems (39.9% compared to 31.1%)
• suicide (25.6% compared to 13.5%)
• bullying/emotional abuse (25.5% compared to 13.6%), and
• discrimination as a personal concern (19.4% compared to 9.7%).[19]

These findings highlight the need for a wellbeing focus – including investment in individualised support – for learners with disability.

“At the end of the day, yes, assessments and work placement is very important and those are a core part of the traineeship, but alongside it’s good to have the peer to peer relationships and to build rapport that might help you get employment through them or they might get it through you, if you’re both recommending workplaces – so networking” – Trainee One

Accessibility of TAFE

Disability awareness

RECOMMENDATIONS

• Invest in awareness campaigns across the TAFE community to boost understanding of disability and the rights of people with disability
• Include comprehensive disability specific training in all teaching qualifications and provide additional resources for staff to undertake mandatory ongoing disability related professional development. Training design and delivery should be co-designed with people with disability
• Create accessible feedback frameworks and processes to enable learners with disability to provide direct and continual feedback about their experiences and learning needs

“I struggle with general questions being impolite due to having ADHD and autism. So I ask a question and they say, wow that’s rude. I don’t feel supported and I don’t feel like I’m able to ask the questions because there’s no attempt for them to understand in a way. I generally mute my mic in class and shut up because the way some people say things compared to how I say things – one of us is considered rude or not able to be understood, compared to how different I am to others and that kind of thing” – Trainee Two

TAFE is not accessible to learners with disability when there is low disability awareness among teachers, employers and students, and when learners don’t have the opportunity to communicate their learning needs.

Trainees spoke about the difficulties they experienced when they were still learning and understanding a new diagnosis and how it impacts them, or when trying new medication or ways of managing their disability or illness. It is important for learners to have opportunities to safely discuss these experiences and how they impact their learning needs with teachers and employers.

When trainees were consulted and listened to about their individual needs they reflected they felt supported in progressing by knowing their support needs, having a plan in place and being comfortable communicating with their youth worker, teacher and workplace supervisor.

Conversely, when communication is poor or the trainee has to ‘teach the teacher’ about disability, the learning experience can deteriorate quickly.

“We don’t use the terms high functioning and low functioning. It hasn’t been relevant in many years – it’s ASD [Autism Spectrum Disorder], you’re on the spectrum, we don’t label the part of it anymore. It’s difficult and unnecessary. So [the teacher says], oh, she’s high functioning, she’s coherent, she’s able to do this, she’s not learning deficient. And it’s not entirely accurate and I have still have difficulties. I can learn like everyone else can but my mannerisms are different.

It’s difficult for them to get it out of their head as it’s not an initial thing they’ve been taught so it’s a hinderance more than anything so from experience it became very problematic. They would try to help me and they’re looking up resources and using outdated resources like high functioning.

So yeah, it’s not a fun time and it can lead to some backwards progress and it gets in the way more than I would like to admit, more than it seems possible. It seems like little inconvenient things but they really build up and it’s pretty bad” – Trainee Two

The community has a long way to go to be inclusive and have better disability awareness, and educational and employment settings are no different. Embedding disability specific training in teaching qualifications like the Cert IV in Training and Assessment, mandatory professional development to ensure knowledge is up to date and supporting more people with disability to become teachers will support disability awareness and the accessibility of TAFE. Appropriate resources need to accompany these changes. However, just as important is the need to place learners with disability at the centre of their learning. This means asking each individual learner what their needs are, providing continuous opportunities to communicate feedback about what is working or not working, and acting on what the learner identifies they need.

Supporting engagement and learning needs

Technical challenges

RECOMMENDATION

• Invest in technological infrastructure and resourcing to ensure online learning platforms are accessible, with enough human resource capacity to enable staff to troubleshoot issues promptly

One of the first things trainees spoke about were the technical challenges in having work and assessments uploaded on time and difficulties in accessing the online learning platform.

“They don’t upload my assessments on time… The course work was uploaded late. It sits in a technical department, student engagement, and out of the teacher’s control. The teacher has been understanding of course but it’s frustrating when you want to do it but you’re unable to… When they accepted my enrolment form it was a bit demoralising when we were then unable to access the content. And then once you’ve got it, you’ve only got about two weeks or so, so the pressure.

The issue is it hasn’t been an isolated incident because it started back in April, then in Term 3, then in October as well” – Trainee One

When systems are unable to support learner’s needs, students are at risk of experiencing poor mental health which can lead to disengagement. All learners have different needs but current systems don’t have the level of flexibility required. TAFE can be more accessible to learners with disability by providing coursework and access to online learning platforms with sufficient time for learners to become acquainted with the material and the technology. Clear communication is also needed to minimise anxiety and stress brought on by uncertainty.

“There have been issues with the learning platform… It’s been very difficult and this is before my disabilities come into play.