News Articles and analysis Disability Ageing and Carers

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

Introduction

The Victorian Council of Social Service (VCOSS) welcomes the opportunity to respond to the Emergency Planning and Response Issues Paper released by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (Royal Commission).

VCOSS is the peak body for social and community services in Victoria. Our members include charities, peak bodies, frontline service groups, advocacy organisations and individuals passionate about the development of a sustainable, fair and equitable society.

As part of our sector leadership, VCOSS advocates for systemic change to improve the lives of people with disability. VCOSS supports over 40 Victorian disability advocacy organisations to undertake collaborative systemic advocacy under the banner of the ‘Empowered Lives’ campaign[1]. This submission is informed by the insights and experiences of Empowered Lives members during the recent bushfires and the continuing COVID-19 pandemic[2].

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.”[3]

 

The ability of people and communities to adapt to change and cope with crisis is connected to and influenced by their life circumstances, experiences and resources.

People and communities with strong social capital, connections and resources are often better placed to prepare for, respond to and recover from an emergency[4]. Conversely, people and communities facing disadvantage are “socially vulnerable” to emergencies and more at risk of the immediate, medium and long-term effects of disasters, such as loss, injury, and social and economic hardship[5]. As a consequence of these inequalities:

  • People with disability may not have access to the tools, resources and supports to prepare for emergencies and stay safe, and this can have a significant and sustained impact on their wellbeing.
  • Disruptions to physical, social, economic, and environmental networks and support systems due to emergencies can affect people with disability more than the general population. For example:
    • People with disability may not be able to access emergency facilities and services, including shelters, camps, food distribution and transportation
    • Access to vital support services may be lost or reduced.
  • Discriminatory attitudes, actions and practices can impinge on the human rights of people with disability during emergencies, which can result in limited access to support, ignorance of the interests and needs of people with disability, and restrictions on people’s choices and freedoms.

Pre-existing inequities experienced by people with disability must be addressed to ensure people have social and structural support to prepare for, respond to and recover from emergencies.

The rights and needs of people with disability are often relegated in emergencies.

In recent (and current) crises, such as the 2019/20 summer bushfires and COVID-19, people with disability have not been accorded priority during disaster management activities and in emergency responses. During the COVID-19 pandemic in particular, people with disability, their families, carers and support network have been feeling ignored and excluded[6].

Emergencies and disasters do not discriminate; so it is important, too, that emergency planning and responses do not exclude or ignore the rights, interests, needs and expertise of people with disability.

As a signatory to the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD), Australia is obliged to protect and promote the rights of people with disability. Article 11 of the CRPD focuses on the protection and safety of people with disability during times of risk, including emergencies, natural disasters and armed conflict. As a signatory to the Sendai Framework for DRR (2015-2030), Australia must engage the community to develop policies, plans and standards and ensure the whole community is well prepared for natural disasters[7].

Early and ongoing engagement with people with disability is crucial in ensuring ongoing and future emergency responses are timely, tailored and considered. By adopting proactive approaches and including people with disability in emergency planning, a range of barriers and issues can be prevented and addressed. There is significant scope for access to crisis support, essential supplies, financial assistance and specialised services to be strengthened through better engagement with people with disability, their families and carers, before, during and after times of crisis.

VCOSS and Empowered Lives members commend the Royal Commission for proactively seeking to listen to, learn from and elevate the experiences of people with disability in emergencies. As Australia emerges from recent and ongoing emergencies, we must work together to reflect on lessons learnt, to confront new and existing challenges, and to design inclusive, accessible and equitable emergency planning and responses.

 

Case study: Disability advocacy during crisis and in recovery

The devastation caused by the Black Summer bushfires of 2019-2020 has had, and continues to have, a significant and sustained impact on people with disability, their families and carers, and entire communities. In Victoria’s East Gippsland region, a local advocacy organisation worked with people and families during the disaster and continues to provide support through the recovery phase.

More than 60 people with disability were evacuated to relief centres. Due to the low number of accessible and available options in the local area, people and families were evacuated to unfamiliar towns, for weeks and months, away from their families, vital aids and equipment and support services. Advocates worked with people with disability and families to break down barriers and ensure their voices were heard.

Family members, friends, pets, homes and livelihoods were lost in the fires. The destruction of the fires, combined with the emotional toll, continues to affect people in a range of complex ways. Many people continue to live in temporary accommodation or unsafe housing, including those whose homes were under-insured. Homes equipped with accessible features and technology destroyed in the fires are especially difficult to rebuild.

The grief, trauma and mental health impacts are profound and diverse. People continue to grieve the loss of loved ones. Children with sensory disabilities remain fearful and stressed by the sounds of emergency vehicles. People with pre-existing mental health conditions require intensive support to access services and funding, to maintain tenancies, and to care for themselves and their family.

Six months after the fires, advocates continue to meet and support new clients who have multiple and complex needs. Many have ‘fallen through the cracks’ and are not connected to any form of support. People with disability experiencing homelessness, with dual disability or without a diagnosis, and people experiencing family violence need high levels of specialist advocacy and support.

There remain high concerns about ongoing support for people with disability impacted by the bushfires. People will need support to access and navigate mainstream services, financial assistance, insurance, housing options, support service eligibility and funding, and to access counselling for some time to come. COVID-19 and social distancing measures have re-traumatised some people and families, and has further complicated what was, and continues to be, a precarious situation.

 

Summary of recommendations

Include people with disability in emergency preparations and planning

  • Address the existing inequities experienced by people with disability to increase their capacity to plan, respond to and recover from emergencies.
  • Promote, protect and respect the rights, safety and wellbeing of people with disability in line with Australia’s obligations as a signatory to the UN CRPD.
  • Engage people with disability and their support networks to co-design inclusive emergency management plans, strategies and resources.
  • Ensure emergency community education campaigns are inclusive and accessible.
  • Expand access to, and promotion of, person-centred emergency planning resources, and ensure resources include a focus on documenting formal and informal safeguarding supports.
  • Fund disability advocacy and self advocacy organisations to deliver person-centred emergency planning training, in partnership with emergency management entities.
  • Support people and communities to build and maintain social and community connections – which act as an informal safeguard – before, during and beyond emergencies.

Ensure emergency responses are inclusive, accessible and timely

Access to emergency information

  • Partner with media organisations, the Media Entertainment and Arts Alliance and other interested parties, such as the Organisation of News Ombudsmen, to develop a best practice Inclusive Emergency Reporting Model that broadcasters and publishers are encouraged adopt, embed within editorial policies and promote to staff.
  • Communicate emergency messages clearly and consistently so people know what to do to stay safe.
  • Ensure all emergency updates include Auslan interpreters and captions.
  • Make Easy Read communications and resources available to support people with intellectual disability to plan for and respond to emergencies.
  • Ensure translated resources and ongoing community engagement approaches are used to connect and communicate with culturally and linguistically diverse communities.
  • Train people on-the-ground in emergency settings about how to communicate with people with disability and how to access communication supports.
  • Engage people with disability in the review of the Australian Disaster Resilience ‘Communicating with People with a Disability Handbook’.
  • Fund disability advocacy organisations to deliver responsive and proactive phone and text support for people with disability during and after emergencies.

Sustain vital support services

  • Ensure comprehensive, cross-government continuity of support strategies are in place to maintain service delivery for people with disability during emergencies.
  • Support community organisations to prepare for and respond to emergencies by providing ongoing and responsive funding that:
    • meets the real costs of service delivery
    • enables participation in local emergency planning, networks and partnerships, and
    • supports safe and agile responses to emergencies.
  • Ensure community organisations are well engaged and informed during emergencies, to increase the reach of emergency messages into and across the community and to enable the delivery of safe, agile service responses.
  • Require service providers (funded by the government and/or registered with the ACNC) to engage with service users to develop service-level and individual emergency plans that value, respect and uphold people’s rights, freedoms and choices.
  • All levels of government and the NDIA must urgently collaborate and take action to address existing and emerging workforce, funding and market issues, which have been exacerbated by recent emergencies.
  • As part of state and national emergency planning, ensure people with disability can maintain access to aids, equipment and technology.

Deliver equitable and responsive universal services

  • Ensure emergency planning and responses for all universal services, including health, housing and education, include and prioritise the rights and needs of people with disability.
  • Continue funding Medicare-subsidised telehealth to enable people with disability and other communities to gain greater and more frequent access to health care.
  • Invest in increasing the supply of sustainable and accessible long-term housing.
  • Make emergency evacuation centres, crisis and temporary accommodation accessible and inclusive for people with disability.
  • Ensure children with disability have ongoing access to learning and developmental support during emergencies.
  • Deliver targeted, timely support for carers before, during and after emergencies to support their caring role, health and wellbeing.

 

 

Support financial capacity and independence to maintain access to essentials

  • Address the higher levels of poverty experienced by people with disability as a contributing factor to health, safety and independence in emergencies.
  • Require essential service providers to provide relief to customers during and after emergencies and disasters, including extra time to pay bills and banning disconnections.
  • Ensure people with disability have equitable access to emergency relief payments and income support measures.
  • Encourage businesses to work with people with disability to develop emergency responses that enable people to access essential supplies and food.
  • Include people with disability in financial stimulus, economic measures and employment strategies implemented during and after emergencies.

Promote and protect safety and freedom from violence, abuse, neglect and exploitation

  • Support people with disability to build, grow and maintain their support network and community connections before, during and after emergencies.
  • Adequately fund independent disability advocacy organisations, self-advocacy groups and safeguarding bodies to meet increased demand and support personal emergency preparedness initiatives.
  • Provide flexible contingency funding for disability advocacy organisations, self advocacy groups and safeguarding bodies to scale up their capacity in the event of an emergency in their community.
  • Learn from and listen to people with disability, disability advocacy organisations and self-advocacy groups about their experiences of emergencies to strengthen future planning and responses.
  • Engage disability advocacy organisations and self-advocacy groups in local emergency planning processes and committees.

Deliver an equitable recovery from emergencies

  • Ensure people with disability can access immediate and ongoing counselling and support for the mental health impacts of emergencies.
  • Make financial assistance, including recovery grants and insurance support, more accessible for all.
  • Apply universal design principles to enhance the accessibility of homes, communities and public spaces after disasters that impact physical and built environments.

 

Include people with disability in emergency preparations and planning

Address structural barriers and pre-existing disadvantage

RECOMMENDATIONS

  • Address the existing inequities experienced by people with disability to increase their capacity to plan, respond to and recover from emergencies.
  • Promote, protect and respect the rights, safety and wellbeing of people with disability in line with Australia’s obligations as a signatory to the UN CRPD.

Resilience to emergencies is best built before and beyond times of crisis, and is deeply connected to the resources, opportunities and structures that support people and communities in everyday life. People facing disadvantage, including people in poverty, people with disability, older people, people without housing or living in poor quality housing, and people from culturally and linguistically diverse backgrounds, are more “socially vulnerable” before, during and after emergencies and disasters[8]. They are hit the hardest and longest by emergencies, have less capacity to prepare and respond, and often have fewer resources and social support to recover.

The pervasive impacts of disadvantage, discrimination and marginalisation compound the challenges faced by people with disability in emergencies. To ensure people have a solid foundation to prepare for, respond to and recover from emergencies, pre-existing structural disadvantage and inequalities must be addressed.

As a signatory to the UN Convention on the Rights of People with Disability (CRPD), Australia has committed to promoting, respecting and realising the human rights of people with disability. Meeting these obligations – in every aspect of people’s lives – would ensure people with disability have greater opportunities and capacity to build their emergency resilience.

Place the lived experience of people with disability at the centre of emergency planning and response

RECOMMENDATION

  • Engage people with disability and their support network to co-design inclusive emergency management plans, strategies and resources.

Responses to the rights and needs of people with disability during emergencies are slow and fragmented. A key impediment is that there are limited or inconsistent mechanisms to ensure people with disability are engaged in emergency management planning and reporting[9]. Additionally, there are no nationally consistent emergency management standards that ensure access to disability-specific and disability-responsive supports are provided during emergencies[10].

Too often, disability-specific plans and measures are introduced as an afterthought, and usually only come about as the result of sustained, sector-wide advocacy. During the COVID-19 pandemic, the development of a management and operational plan tailored to people with disability was woefully late. While plans for other communities facing high risks, such as older people, were prioritised and quickly developed[11], a strategy to address the needs of people with disability was released almost a month later[12].

People with disability must not be forgotten, ignored or excluded in emergency planning, management and response. To effect real improvements, emergency management entities, businesses and organisations should adopt co-design approaches to meaningfully engage people with disability, their support networks and community organisations. People with disability, and those who support them, know very well the unique and varied challenges they face – they are forced to solve problems and overcome social and structural barriers every day. Including people with disability, and organisations that support people with disability, in the development of emergency planning and risk reduction strategies is crucial[13].

Co-design in practice – Disability-Inclusive Disaster Risk Reduction (DIDRR) Framework and Toolkit

By bringing together the disability, community and emergency sectors, the DIDRR initiative aims to increase inclusion of people with disability in disaster preparedness[14].

Through the collaborative co-design of tools, resources and supports, the project aims to support person-centred emergency preparedness and increase engagement of people with disability in community-level emergency planning. One of the resources developed through this initiative, the Person-Centred Emergency Preparedness (PCEP) Toolkit[15], is designed to assist people with disability to plan for emergencies and engage their support network.

A version of this toolkit and supplementary resources were developed in response to COVID-19[16]. Disability advocate and co-author Ricky Buchanan’s experiences of using these resources were positive: “Someone in my home got the dreaded phone call last week – he’d been exposed to COVID-19 and needed to self-isolate. And to my extreme shock, all our contingency plans actually worked as intended!”[17]

Genuine co-design goes beyond consultation; it is an approach that responds to and learns from people’s perspectives and ideas, values multiple forms of expertise including lived experience, and shares the power in exploring and designing different and creative solutions[18]. By engaging people early, co-design prevents preconceived ideas and assumptions from limiting both a deep understanding of issues and the identification of new, realistic and effective solutions[19]. After and during Australia’s recent emergency experiences, many people with disability and community organisations will have experiences to share that will be invaluable for future planning and responses. We encourage emergency management entities to listen to and learn from people with disability to develop and strengthen emergency strategies and resources.

Enable person-centred approaches

RECOMMENDATIONS

  • Ensure emergency community education campaigns are inclusive and accessible.
  • Expand access to and promotion of person-centred emergency planning resources, and ensure resources include a focus on documenting formal and informal safeguarding supports.
  • Fund disability advocacy and self-advocacy organisations to deliver person-centred emergency planning training, in partnership with emergency management entities.

Personal preparedness is one of the best ways to mitigate the risks posed by emergencies[20]. During emergencies, safety for people with disability depends on both optimised self-reliance and planned reliance on support networks and services[21]. Although personal and household emergency resilience has become a key component of emergency management policy and practice in Australia[22], people with disability and their support network are often not engaged in these vital preparation activities[23]. Public awareness and education campaigns tend to be very general and broad, and often do not cater to or include people with disability[24].

People with disability should be empowered to undertake personal emergency planning, with the support of practical training and resources. The process of developing a personal emergency plan gives people choices, control and confidence ahead of any challenging situations. Person-centred planning tools give people space, time and guidance to think ahead about potential scenarios, identify any risks, and to document important information, decisions and preferences.

Projects like the Person-Centred Emergency Preparedness (PCEP) Toolkit outlined above, and the Red Cross REDiPlan resources for individuals and households[25], are a welcome step in the right direction. These types of resources could be further strengthened by an increased focus on formal and informal safeguards. For example, in addition to listing key support network contacts and medical and utilities providers, a section on safety could provide a space for people to list contacts and organisations they would feel comfortable talking to about any issues or concerns. This may include trusted family and friends, important safety hotlines, formal complaints bodies and disability advocacy organisations.

The roll out of these resources should build on and leverage existing connections and networks, and encourage trust between people, communities, organisations and government bodies[26]. We recommend disability advocacy organisations, self-advocacy groups and community organisations are resourced to lead these activities in their community, in partnership with local emergency management entities.

 

Promote strong communities and social connections

RECOMMENDATION

  • Support people and communities to build and maintain social and community connections – which act as an informal safeguard – before, during and beyond emergencies.

Connected, informed and inclusive communities are a powerful force for good, in times of crisis and beyond. Knowing neighbours, staying in touch with friends and family, having someone to call for help or a chat, and being connected to community groups are all ways in which we collectively look out for and support each other.

The strength of existing community and social networks are identified by Australia’s National Strategy for Disaster Resilience as fundamental features of a disaster resilient community[27].

People with disability experience greater social isolation and have less “social capital” to call on than people without disability[28]. In emergencies, low social capital can impact people’s access to information, financial support and channels of recovery, and increase feelings of isolation[29].

People with disability with fewer connections and informal supports, particularly people living in closed and segregated settings, may face greater risks to their health, safety and wellbeing before and during emergencies. Reductions in services and activities, and having fewer opportunities to socialise and connect with others, can be isolating and can limit the visibility of violence, abuse, neglect and exploitation.

Strategies to build and nurture social and community connections, which act as an informal safeguard in both emergencies and everyday life, should be explored, encouraged and resourced by governments.

 

Ensure emergency responses are inclusive, accessible and timely

Inclusive and rights-based approaches to emergency management ensure people with disability have equitable access to ‘mainstream’ assistance as well as access to specialist disability-related services and supports[30]. In line with its obligations as a signatory to the UN CRPD, Australia is required to promote, protect and ensure full and equal enjoyment of human rights and freedoms by all people with disability.

As we have witnessed during recent and ongoing emergencies in Australia, the choices and actions of governments, organisations and businesses can impinge on the rights and freedoms of people with disability.

  • A lack of accessible information before and during an emergency can prevent people with disability from understanding the issues and risks, and from developing personal strategies to stay safe.
  • Disability support services, including those providing vital daily care and assistance, may have to reduce or cease supports during emergencies.
  • Emergency responses by universal services, including health, housing and education, often do not have an intentional focus on delivering equitable support to people with disability.
  • Financial pressures can be heightened for people with disability, families and carers, and compounded by limited access to, or exclusion from, emergency relief and income support measures.
  • Despite good intentions, initiatives implemented by businesses, based on a limited understanding of the needs of people with disability, may exacerbate the barriers and stress people face to access food and supplies.
  • Disability advocacy and self-advocacy organisations, which are already under huge pressure, may experience a surge in demand, be constrained by funding agreements, and be less resourced to adapt their service model quickly.
  • Informal and formal quality and safeguarding measures may have less visibility of and access to people with disability, particularly people living in segregated settings.
  • Crisis response services, including accommodation and family violence services, are often not accessible for people with disability.
  • People with disability who already experience social isolation and mental health concerns may be further disconnected from their support network and community.

All these challenges combined create an environment where people with disability may be at greater risk of violence, abuse, neglect and exploitation, which can be both more prevalent and invisible during times of crisis. There are many short and long-term actions governments, organisations, businesses and communities can collectively take to promote the rights, safety and wellbeing of people with disability as part of emergency responses.

As Australia navigates a path forward from recent, devastating emergencies, VCOSS and Empowered Lives members urge all parties to reflect on recent experiences and to work with people with disability to design better, more inclusive emergency responses.

Provide timely and equitable access to emergency information

RecommendationS

  • Partner with media organisations, the Media Entertainment and Arts Alliance and other interested parties, such as the Organisation of News Ombudsmen, to develop a best practice Inclusive Emergency Reporting Model that broadcasters and publishers are encouraged adopt, embed within editorial policies and promote to staff.
  • Communicate emergency messages clearly and consistently so people know what to do to stay safe.
  • Ensure all emergency updates include Auslan interpreters and captions.
  • Make Easy Read communications and resources available to support people with intellectual disability to plan for and respond to emergencies.
  • Ensure translated resources and ongoing community engagement approaches are used to connect and communicate with culturally and linguistically diverse communities.
  • Train people on-the-ground in emergency settings about how to communicate with people with disability and how to access communication supports.
  • Engage people with disability in the review of the Australian Disaster Resilience ‘Communicating with People with a Disability Handbook’.
  • Fund disability advocacy organisations to deliver responsive and proactive phone and text support for people with disability during and after emergencies.

Clear communication is a vital component of emergency planning, management and response. It enables people to take action, stay safe and limit their exposure to any risks.

“Communication is the lifeline between emergency management and people with disability. Everyone needs to have good access to information to better prepare for disasters and warnings when disasters are imminent”[31]

While international human rights obligations promote the importance of providing equal access to spaces, services and information[32], people with disability face barriers in accessing public spaces or understanding government information[33]. Despite the heightened risks people with disability can experience during an emergency, vital emergency communication is often not accessible due to the complexity of messages, the methods of delivery and the impact of the ‘digital divide’.

To ensure people with disability can prepare for and respond to emergencies, information must be accessible and made available at the same time as broad community updates. This has not been the case with Australia’s response to COVID-19. In the early stages:

  • government press conferences did not include an Auslan interpreter or captions[34]
  • crucial factsheets were released as PDF only, making them largely inaccessible to people with vision impairment who use screen readers
  • over 80 per cent of families of children and young people with disability reported lacking information about COVID-19[35].

More than 20 per cent of Australians have low literacy, numeracy and digital problem-solving skills[36]. Complicated flow charts, graphs and dense medical terminology make it hard for many people to understand what is happening and to know what they should or shouldn’t do. Access to timely, meaningful information can be even more challenging for people with disability and their families from culturally and linguistically diverse communities. For example, important messages communicated in English over the loudspeakers at Melbourne’s high-rise public housing estates locked down during COVID-19 was not accessible to residents who do not understand English and residents who are Deaf or hard of hearing.

Where emergency information is delivered on-the-ground in impacted communities, it is essential people in any face-to-face roles know how to communicate with people with disability so they can access support and stay safe. Communicating in a disability-inclusive way does not mean people need to be an “expert” in what to do or say – communicating clearly, being calm, considerate and patient, taking the time to listen, and ensuring people can access language and Auslan interpreters if they need to are all ways to be an inclusive communicator. Training and support before or during emergencies can also be valuable. During the 2019-20 bushfires, Wellington Shire Council in Victoria worked with Scope to develop an e-learning module on communicating with people with disability for staff working in Emergency Relief Centres and other public facing staff[37].

To ensure people could access information and resources during COVID-19, disability advocates, organisations and academics worked rapidly to develop and share resources such as Auslan-only video news updates[38], Easy Read and Easy English factsheets[39] and social stories for people with autism[40]. A range of web pages to collate and promote accessible materials continue to be updated by disability advocacy organisations. While these initiatives are a powerful demonstration of the resilience and resourcefulness of the disability community, there is a risk that through these grassroots approaches, the meaning and detail of key health and safety messages could be lost or misinterpreted, or materials may become quickly outdated as emergency advice changes.

Emergency management entities, governments and media outlets must work in partnership with people with disability to develop inclusive communications strategies and resources. The current review of the ‘Communicating with People with a Disability Handbook’[41], released by the Australian Institute of Disaster Resilience in 2013, is an ideal opportunity to engage people with disability to co-design refreshed guidance for emergency managers.

Online and mobile communications provide incredible platforms to share emergency updates quickly and broadly. However, people with disability, people living in rural and regional areas and people on low incomes are more likely to be ‘digitally excluded’, due to limited access to the internet, lower digital literacy, and cost barriers to accessing technology[42]. These barriers may be greater for people with an intellectual disability, people living in shared accommodation who do not have reliable personal internet access, and people with disability from culturally and linguistically diverse backgrounds. Isolation, income support and technology access – issues all linked to enabling access to information, services and social connection – were identified as the top three emerging issues during COVID-19 in a survey of Australian disability advocacy organisations[43].

Phone-based services should be scaled up and resourced to provide additional, tailored support for people with disability and their support network during emergencies. Disability advocacy organisations experienced a 70 per cent increase in information calls during the COVID-19, mostly related to maintaining support services, managing NDIS plans and accessing government payments[44]. While we welcome the Federal Government’s establishment of a dedicated disability hotline for COVID-19, its development was too slow. The Disability Information Hotline was introduced close to a month after the World Health Organisaton’s declaration of the pandemic[45], and almost four months after the first case was confirmed in Australia[46].

A smarter, more sustainable investment would be to boost funding for existing disability information services to provide responsive and proactive phone-based support during emergencies and in the recovery phase. Disability advocacy organisations are well-placed to deliver this type of support, given their existing relationships, extensive knowledge and understanding of inclusive communication approaches. Where phone services need to provide specific health advice or safety recommendations, partnerships and referral pathways could be established with relevant government agencies and organisations to ensure people can access detailed, accurate and timely information.

Sustain vital support services

Plan for and prioritise continuous, quality support for people with disability

Recommendation

  • Ensure comprehensive, cross-government continuity of support strategies are in place to maintain service delivery for people with disability during emergencies.

Many people with disability, their families and carers rely on a range of services and supports to survive[47]. When services are forced to close or change due to emergencies, there are a range of impacts for individuals, families and households.

At a practical level, people may receive less or none of the day-to-day support they need. This may include support to shower, cook, eat and access medical care. The loss of social connections and routine is equally significant, and can contribute to loneliness, isolation and challenges at home.

Restrictions on movement across and within communities, from natural disasters and other measures like border closures, can cut off access to vital face-to-face support that simply cannot be delivered online or over the phone. Over 40 per cent of people receiving NDIS or non-NDIS funded services have received less support due to the COVID-19 pandemic[48].

Pressure on families and carers also increases during emergencies, impacting people’s capacity to work and to look after their own health and wellbeing. During the COVID-19 pandemic, 47 per cent of carers lost some or all of their supports[49].

Existing and emerging workforce, funding and market issues – many of which were well-known and critical before the COVID-19 pandemic – have become more pronounced and problematic. Governments, regulators and service providers must work together to fix these issues, and to prepare for and respond to emergencies to ensure people with disability can continue to access safe, quality support during emergencies.

Support the emergency resilience and responses of community organisations

Recommendation

  • Support community organisations to prepare for and respond to emergencies by providing ongoing and responsive funding that:
    – meets the real costs of service delivery
    –   enables participation in local emergency planning,
    networks and partnerships, and
    –   supports safe and agile responses to emergencies.
  • Ensure community organisations are well engaged and informed during emergencies, to increase the reach of emergency messages into and across the community and to enable the delivery of safe, agile service responses.
  • Require service providers (funded by the government and/or registered with the ACNC) to engage with service users to develop service-level and individual emergency plans that value, respect and uphold people’s rights, freedoms and choices.

During and after disasters, Australians often turn to community organisations for support or advice, and to help communities to cope and recover. Community organisations are often at the frontline, providing resources, support and triage services to people impacted in the immediate aftermath of an emergency.

Community organisations have deep and broad knowledge of the challenges and barriers experienced by people facing disadvantage in their community, and established, trusted relationships with people and communities who may face higher risks in an emergency. Ensuring community organisations are engaged in local emergency planning networks and partnerships, and well informed during emergencies, is vital.

Through early engagement and strong relationships with emergency management entities, community organisations are better placed to build their operational resilience to ensures the rights and needs of the people they work alongside are known, promoted and supported. Preparing for and responding to emergencies takes time and resources.

Community organisations often have little in reserve to call on in a crisis, as funding restrictions, grant processes and low unit prices do not always sufficiently account for overhead and administrative costs[50]. Emergencies and natural disasters, which are likely to increase due to climate change, place pressure on community organisations, their delivery of services and their workforce. VCOSS surveyed Victorian community organisations in 2019 about their experiences of climate change[51] and 44 per cent of respondents said they had been affected by extreme weather or a disaster in the past 12 months. The most common impacts reported included staff transport, access to and demand for services, staff absences and health.

In emergencies, community organisations work hard to maintain service continuity while rapidly increasing the reach and breadth of their support – often with little to no certainty about how their responsive support will be funded. Under the fee-for-service model of the NDIS, service providers are funded and required to deliver safe, quality support services; however low pricing leaves little capacity for proactive initiatives and insufficient funding for comprehensive workforce training and development[52]. When community organisations rise to the challenges facing their local community, governments and funders must be fast, agile and flexible in delivering additional funding and support

Community organisations must also be valued and engaged as a messenger and connector to people and communities. Their role in sharing emergency information, particularly with people facing disadvantage and ‘hard to reach’ communities, should be supported and encouraged. Emergency advice and guidelines also have a direct impact on how and where community organisations provide support. When advice is unclear or inconsistent, organisations must make fast and difficult decisions based on the information available.

Hazelwood Mine Fire

One Morwell-based community organisation that provides day programs for people with disability noted with concern the tenuous position that the Hazelwood Mine fire had placed its organisation. Despite an order to evacuate, they had no choice but to accept clients to the day program as the clients’ accommodation is not staffed during daytime hours. “On really smoky days we relocated our day programs and did trips to the beach. It was very challenging trying to organise at short notice transport for 40 people with varying disabilities.”[53]

In some circumstances, the interpretation of emergency directives can go too far and breaches the rights and freedoms of people with disability. The introduction of health and safety measures during emergencies, by governments or providers, can also impinge on the human rights of people with disability.

COVID-19 – Excessive interpretations of emergency guidance

Social distancing and public health measures introduced during COVID-19 by State and Federal Governments aim to reduce the potential spread of the virus by reducing community movements and interactions. During the pandemic, some service providers implemented additional, tighter measures beyond government guidelines which prevented people with disability from leaving their home, exercising, working, having visitors or accessing health care[54].

An Empowered Lives member organisation also reported some people with disability were being denied access to return to their shared accommodation after staying with family unless they did a ‘COVID test’. Despite being in good health and ineligible for testing based on criteria at the time, the residents could not return home. Conflicting advice from government sources further complicated the issue.

Greater care needs to be taken to balance risk management and human rights in emergency planning and responses. Service providers should work with service users and their support network, including family, friends and advocates, to develop emergency plans that value, respect and uphold their rights, freedoms and choices. This planning is particularly important for people with disability living in shared, segregated and closed settings.

Address critical workforce, funding and market challenges

Recommendation

  • All levels of government and the NDIA must urgently collaborate and take action address existing and emerging workforce, funding and market issues, which have been exacerbated by recent emergencies.

The precarious nature of disability support work – which is heavily casualised and low paid – alongside market and funding issues present significant risks to service delivery and continuity in emergencies. These issues, which pre-date Australia’s recent and ongoing experiences of emergencies, must urgently and comprehensively be addressed.

Disability support workers feel “dangerously overlooked” in response to the COVID-19 pandemic[55]. Casual workers, in particular, face a multitude of financial and health risks, including a reduction of shifts, the potential loss of income while having to self-isolate for their own health or due to contact with a positive COVID-19 case, and the risk of contracting or transmitting COVID-19 through the course of their work[56].

The choice and control afforded by schemes like the NDIS can present additional challenges for governments responding to public health events, as it can be harder to track, train and mobilise the workforce to meet existing and emerging needs[57].

People with disability living in areas with ‘thin markets’ for disability support, particularly regional and rural communities with high exposure to natural disasters, face greater risks and challenges in securing and sustaining services before, during and after emergencies.

While measures have been introduced to support workers and the sustainability of NDIS providers in response to COVID-19[58], a comprehensive and well-resourced strategy to attract, skill, retain and nurture the disability support workforce and market is urgently needed. Now more than ever, all levels of government and the NDIA must work together to support a strong and sustainable sector that delivers choice, control, quality, safety and certainty for people with disability and disability support workers.

While the disability workforce was growing strongly prior to recent emergencies[59], there are concerns about if and how this growth can be sustained in the future. As Australia builds back better and designs employment and economic strategies, opportunities to boost awareness of and access to careers in disability support, in tandem with investments in free or subsidised vocational training, should be considered[60].

Maintain access to aids and equipment

Recommendation

  • As part of state and national emergency planning, ensure people with disability can maintain access to aids, equipment and technology.

The impact of emergencies and disasters on access to and supply of aids, equipment and technology cannot be overlooked. Devices and technology enable independence, support communication and increase dignity for many people with disability. During emergencies, people may be forced to leave their fixed equipment behind in an evacuation, aids may be lost or damaged, electricity for charging devices may not be available, and replacements may take months (if not years) to access.

While pop-up initiatives, such as the eBility website to connect people to donated disability equipment and non-perishable consumables[61], can and do offer some relief, governments and the emergency management sector need to take greater responsibility for managing and maintaining access to aids and equipment.

Deliver equitable and responsive universal services

Recommendations

  • Ensure emergency planning and responses for all universal services, including health, housing and education, include and prioritise the rights and needs of people with disability.
  • Continue funding Medicare-subsidised telehealth to enable people with disability and other communities to gain greater and more frequent access to health care.
  • Invest in increasing the supply of sustainable and accessible long-term housing.
  • Make emergency evacuation centres, crisis and temporary accommodation accessible and inclusive for people with disability.
  • Ensure children with disability have ongoing access to learning and developmental support during emergencies.
  • Deliver targeted, timely support for carers before, during and after emergencies to support their caring role, health and wellbeing.

In addition to support from disability and community services, it is crucial people with disability have access to ‘mainstream’ and universal services before, during and after emergencies. Across health, housing, transport, education and employment, governments and organisations must deliver full and fair access and support to people with disability. Emergencies disrupt a range of supports and systems and force governments, organisations and businesses to adapt to new or uncertain environments quickly, increase their capacity and reach, or implement different models of service delivery. While these changes happen rapidly during times of crisis, the important principles of inclusion must not be forgotten.

Health

People with disability report experiencing poorer health and higher levels of psychological distress than people without disability[62]. Working-age Australians with disability also face significant health inequities across several social determinants of health[63]. Existing barriers faced by people with disability in accessing healthcare, such as the availability of services, costs, communication issues, staff training and discriminatory attitudes[64], can be exacerbated during times of crisis. As evidenced during the Royal Commission hearings into healthcare[65], and as is emerging through COVID-19 locally and abroad, these barriers can deter or prevent people with disability from accessing health care and enjoying quality of life.

“I have a chronic cough so it is very hard for me to know if I have the virus, and you have to have a car to get tested. I did go and have a test but it cost me a $70 taxi fare. The government needs to be aware many people with a disability don’t have cars and can’t drive.”
Heather, self-advocate, Melbourne [66]

During and after emergencies, people with disability must be equally supported to access health care for existing medical conditions and as well as emergency assistance, screening and assessments. VCOSS and Empowered Lives members welcome the expansion of Medicare-subsidised telehealth during the COVID-19[67] and urge the Department of Health and GPs to continue providing this option into the future. There remain serious access barriers to COVID-19 testing for many people with disability, and our members remain concerned about how people with disability will be supported throughout the pandemic’s trajectory, particularly pandemic peaks. While the Federal Department of Health’s Management and Operational Plan for People with Disability provides a foundation for further work[68], the true test will be in its implementation.

Housing

A safe home provides a solid foundation for health and wellbeing; Australia’s housing crisis is well documented. 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 people with disability. While the NDIS is anticipated to support 6 per cent of participants to access specialist disability accommodation[69], over 80 per cent of people with disability who access government-funded services live in private housing[70].

Housing challenges faced by people with disability can be more pronounced during and after emergencies and disasters, where home can be both a source of protection and a place of greater risk. In emergencies where people are required to evacuate for their safety, there are a range of issues that may prevent or deter people with disability from leaving their home. A lack of evacuation planning can result in people with disability being left behind, which can cause significant emotional trauma and contribute to potential loss of life[71].

People with physical disability are less likely to evacuate from their home and wait longer to do so due to a lack of accessible transport and concerns that evacuation shelters will not accommodate their needs[72]. These fears were realised for some people with disability seeking shelter during Australia’s recent bushfires:

“We had mattresses on the floor, but neither I nor my mother is able to get up off the floor once we’re down. It was hard, for example, to get my mother up to go to the toilet. Eventually I took my mother out of the evacuation centre because it was too distressing. We went home in the middle of the night.”[73]

Short term initiatives, such as the Find A Bed website[74] and pop-up accommodation for people experiencing homelessness[75], provided support during recent emergencies. However, these options may not work for people with disability who require assistance from support workers or access to essential aids and equipment.
People should not have to rely on informal, community driven initiatives for support. There needs to be greater focus on, and investment in, increasing the supply of sustainable and accessible long-term, temporary and crisis accommodation.

Children, young people and families

Children and young people with disability can be particularly vulnerable during emergencies; they may find it harder to cope when their environment and supports change, and often need additional support to understand safety risks, emergency signals and evacuation plans. The lives of children and young people with disability, and their families, have been “thrown into turmoil” by COVID-19[76]. Multiple existing and new barriers, including access to inclusive education, support services and daily essentials, place enormous pressure on children, young people and families.

“Many of those who care for children and young people with disability are constantly beset by difficult decisions and precariously balancing work, play, care and education to provide the best possible lives for those under their care. Many people can only manage these things when the world is operating as it normally does – but this global pandemic (especially when immediately preceded by bushfires) has thrown these precariously balanced routines off to such a degree that families are struggling to cope.”[77]

Maintaining access to vital learning and developmental supports, including education and therapy, can be challenging during emergencies. Students with disability, who often already face higher risk of educational neglect and exclusion, are exposed to heightened existing barriers and new challenges during times of crisis[78]. In school settings, emergency management plans often do not incorporate the needs of students with disability[79]. As witnessed during COVID-19, the transition to new learning models and the loss of tailored, individualised support has stretched and stressed many children and families.

In the first wave of the COVID-19 pandemic in Victoria, Association for Children with a Disability experienced a 25 per cent increase in education related calls to its Support Line, and 20 per cent of calls to the Victorian Department of Education’s newly established Parent Line related to students with disability, far outweighing the proportion of students with disability[80].

While the implementation of remote learning in Term 2 worked well for some students, an online learning environment is not always suitable or accessible for children with disability[81]. Face-to-face access to speech, physical and occupational therapy – vital in supporting inclusion and independence – has been replaced by digital service delivery for many children with disability. While some families have leveraged their NDIS funding to access additional support in the home[82], this option is simply not available to most children and families.

The increased responsibilities and additional pressure on carers and families during emergencies such as COVID-19 impacts their ability to work, their working hours and income, as well as their own mental health and wellbeing[83]. More than one in 10 people with disability who access support services are supported by informal carers, including parents, family and friends, who are aged over 65[84]. The impacts are gendered, with increased responsibilities and additional pressure disproportionately borne by women.

 

A range of social and health factors can make older people more vulnerable to the impacts of emergencies and disasters[85]; older carers may be forced to juggle their own safety and wellbeing while also supporting the person they care for. Parents, carers and families must be well supported during emergencies and in recovery, both with their caring role and with their own health and wellbeing.

Support financial capacity and independence to maintain access to essentials

Recommendations

  • Address the higher levels of poverty experienced by people with disability as a contributing factor to health, safety and independence in emergencies.
  • Require essential service providers to provide relief to customers during and after emergencies disaster, including extra time to pay bills and banning disconnections.
  • Ensure people with disability have equitable access to emergency relief payments and income support measures.
  • Encourage businesses to work with people with disability to develop emergency responses that enable people to access essential supplies and food.
  • Include people with disability in financial stimulus, economic measures and employment strategies implemented during and after emergencies.

Maintaining access to essentials during an emergency, including groceries, utilities, medications, aids and equipment, and transport, supports people to stay healthy, safe and well. In emergencies and disasters, a range of environmental and financial factors can impact access to these essentials, which can disproportionately impact people with disability.

Without access to a reliable, liveable income, people with disability and families may be not be in a financial position to prepare for and respond to an emergency. Research shows people with greater financial capacity are better placed to prepare for and respond to an emergency; including aspects of preparation that don’t have a monetary cost, such as developing a household plan[86].

Forty-five per cent of people with a disability in Australia live in poverty, and more than one in 10 experience deep and persistent disadvantage[87]. People with disability are more likely than people without disability to receive government income support[88]. According to a recent national survey, more than 70 per cent of people with disability feel that their financial security and independence has become worse or not changed over the past five years[89].

More than half of people with disability cannot afford to cover their basic needs on their current income[90] and households with at least one person with disability need a further $107 per week to reach the same standard of living as comparable households[91]. In emergencies, these costs are likely to increase even further. For example, greater use of delivery services, the need to bulk buy food and personal care products, higher utilities bills and the use of private travel for essential appointments can all stretch limited household budgets. Access to electricity, water, gas and telecommunications is vital for the safety, health and wellbeing of all people, and particularly people with disability. Lost income or extra expenses can make it difficult for people to keep up with bill payments. Essential service providers should be required to give customers reasonable time and support to catch up on bills.

The financial impacts of COVID-19 on people with disability have been extensive and largely ignored by government responses. Many people with disability, carers and families, have reduced their working hours or made new arrangements to stay safe during social distancing measures, further reducing their household income[92]. People with disability on the Disability Support Pension have been excluded from receiving the $550 fortnightly supplement available for people on other government payments[93]. People on the Carer Payment or the Carer Allowance are also not able to access this much-needed supplement[94]. Over 90 per cent of people with disability reported increased expenses during the pandemic[95] and 58 per cent of carers spent more money on supporting the person they care for[96].

A national survey of consumers shows close to a third of people with disability dipped into their savings, and one-quarter used a credit card or buy-now-pay-later option, to manage their household expenses during the pandemic[97]. More than 2.6 million Australians have also sought early access to their superannuation, including many who have completely emptied their accounts[98].

In addition to financial challenges, people with disability, families and carers may experience greater or additional barriers to purchasing groceries and supplies during emergencies.

“When I do go to the shops I can’t go by myself, because when I do, I can’t reach some the things I want. I have to ask for help and then I am worried about people touching the item, so I have to go with my husband. That has made a big impact on me because I used to go by myself and ask my community for help before the virus. Also once the virus started, people wouldn’t help.” Janet, self-advocate in Melbourne [99]

During the COVID-19 pandemic, more than 60 per cent of families of children and young people with disability were unable to buy essentials[100]. One in 8 Australians provided support and care for vulnerable people outside of their household during the pandemic, primarily through assisting with shopping and meals[101].

 

Before, during and beyond times of crisis, businesses and employers have a key role to play in ensuring their services and systems are accessible and affordable for people with disability and their families.

Supermarket responses to the COVID-19 pandemic

During the first wave of COVID-19, supermarkets quickly introduced a range of measures to improve access to groceries for people with disability, older people and essential workers[102]. While these initiatives were widely welcomed by the community, the design and implementation of some approaches limited their helpfulness for some people with disability and their support networks.

For example, our members reported:

·       The early times of “community hours” for people with disability and older people were very difficult to access for people who need support to get up,  get ready and go to the supermarket

·       Local store changes to the entry, layout, registers and exits to improve social distancing were hard to navigate for people with disability who require step-free access and people who have a vision impairment

·       Priority home delivery services for NDIS participants[103], while welcome, don’t include the majority of people with disability who are not NDIS participants

·       Delivery fees, which often do not flex and change with the size or value of an order, are a stretch for people on already tight budgets

·       The focus on identification and proof of age, disability or carer status to access community hours and priority shopping measures was challenging for people who either don’t have or couldn’t find their ID cards, and particularly stressful for people with “invisible” disabilities.

These promising, well-intended additional supports for customers with disability could be strengthened through further consultation with people with disability, carers, families and organisations.

The economic and physical impacts of emergencies on work and employment are also likely to have a disproportionate impact on people with disability seeking and retaining employment. Australians 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[104].

Low disability awareness and discriminatory attitudes and behaviours of employers also impact on jobseekers with disability[105]. Women with disability – who are less likely to be employed than men, have lower incomes, and often work in precarious or casual roles – may experience both gender and disability biases[106].

While emergencies and disasters can negatively impact employment prospects and the broader economic environment, they can also generate new opportunities through recovery. It is vital that financial and economic stimulus measures resulting from emergencies, as well as targeted employment strategies, are inclusive of and accessible to people with disability. All levels of government must work together to commit to equitable, fair responses that don’t leave people behind.

 

Promote and protect safety and freedom from violence, abuse, neglect and exploitation

Recommendations

  • Support people with disability to build, grow and maintain their support network and community connections before, during and after emergencies.
  • Adequately fund independent disability advocacy organisations, self-advocacy groups and safeguarding bodies to meet increased demand and support personal emergency preparedness initiatives.
  • Provide flexible contingency funding for disability advocacy organisations, self-advocacy groups and safeguarding bodies to scale up their capacity in the event of an emergency in their community.
  • Learn from and listen to people with disability, disability advocacy organisations and self-advocacy groups about their experiences of emergencies to strengthen future planning and responses.
  • Engage disability advocacy organisations and self-advocacy groups in local emergency planning processes and committees.

People with disability experience and are at far greater risk of violence, abuse, exploitation and neglect than people without disability[107]. Women, children and young people with disability, who are more likely to experience family violence than people without disability, often face barriers in disclosing and reporting abuse, seeking help, and accessing appropriate support, protection and justice[108]. Co-resident violence in disability group homes often does not receive practical attention or support for victims and perpetrators[109].

As outlined through this submission, emergencies and disasters can heighten these risks by disrupting access to supports, social and community connections. Emergency responses can also introduce new and additional challenges, for example, when information and services are not inclusive or accessible for people with disability.

The reach of, and access to, formal and informal oversight and safeguarding mechanisms can also be reduced during emergencies due to physical, social and environmental barriers, as well as resourcing pressures.

All aspects of the safeguarding ecosystem must be supported to prepare for emergencies and to continue providing assistance during and beyond times of crisis. Without targeted and timely support, there is a real danger that people with disability will be hidden, disconnected, excluded and subject to harm.

The vital role and value of informal supports

Family, friends, neighbours, colleagues and other community connections are invaluable for everyone and can be especially important in a time of crisis. Having a trusted support network to turn to for advice, to solve a problem or for day-to-day help, also acts as an informal safeguarding mechanism. For people living with disability, having a wide network of informal supports can protect and promote their human rights, decision-making, safety, wellbeing, and quality of life[110].

Emergencies disrupt informal supports in a variety of ways. Trips to a local café or shops may not be possible, friends and family may not be able to visit, and people’s support networks might be dealing with the direct or indirect impacts of an emergency or disaster at home, work or in their community. As we have seen during COVID-19, social distancing measures to minimise the spread of the virus also limit or prevent people from connecting with their support network in the way they usually would.

VCOSS and Empowered Lives members are concerned about the impact of COVID-19 related visitor restrictions for people with disability living in group homes. Without connection to family, friends and supporters, people living in group homes may not be able to freely and comfortably share issues with those they trust, and other concerns are less visible for support networks to observe.

Additional restrictions placed on people’s movement and enjoyment of outside spaces during COVID-19, particularly residents of Melbourne’s locked-down public housing estates, have been extremely stressful for many people and their families, who need access to open spaces for their wellbeing.

Further attention must be directed towards supporting people with disability to identify and stay connected to their support network and community. While personal emergency preparedness tools are a great start in encouraging people to identify their support network, there is an opportunity to extend the reach and depth of this work through further investment in advocacy and self-advocacy programs and resources.

Access to disability advocacy and self-advocacy support

Independent disability advocacy promotes, protects and advances the human rights of people with disability, and promotes these rights to the wider community. Disability advocacy supports people with disability and their support network to understand their human and legal rights, communicate their needs, and have their needs met[111]. It is an important safeguard to help prevent and report abuse[112]

Nationally, all parts of the disability advocacy sector are under-resourced and under pressure. Before the COVID-19 pandemic and the summer bushfires, many Victorian organisations reported they had closed their books or were maintaining long waiting lists due to high demand[113]. Through the transition to the NDIS, requests for support have increased for many disability advocacy organisations, particularly to assist people to navigate the complex processes of applying for and accessing the scheme[114]. Access to a disability advocate is particularly important for people with complex needs or facing disadvantage, or those with limited informal supports or networks[115]

Self-advocacy and peer support programs empower people to understand and assert their rights, and in turn, build their capacity and confidence to speak up and take action. Funding for disability advocacy is inadequate in supporting the needs of all people with disability.

The legacy of these issues and the challenges they present are magnified during times of crisis and force disability advocacy organisations to make difficult decisions.

Advocacy on the frontline of the fires

In early 2020, many community organisations in areas heavily impacted by bushfires had to rapidly change or increase their services to support their local community. One small, under-resourced disability advocacy organisation in Victoria stepped up to the challenge by attending relief centres to help people with disability find alternate and accessible information, despite this being well outside their usual work. Their small staff team worked significant additional hours, without knowing if and how their work could be funded. There were no clear avenues for accessing crisis funding for this support which was outside their usual contractual obligations.

Disability advocacy organisations, like many others in the community sector, can be heavily impacted by emergencies and disasters. Community organisations are used to lean times and working efficiently, but often don’t have the resources to transform their service or boost their capacity in times of crisis[116].

In response to COVID-19, disability advocacy organisations have found new ways of supporting people with disability to reduce face-to-face contact, including the use of phone and video services. However, these forms of communication continue to present challenges in building rapport, gaining consent and communicating directly with clients, particularly people who are non-verbal or have difficulties using technology. The Victorian Community Visitors program also suspended in-person services and introduced new ways of working[117].

Across Australia during COVID-19, over half of disability advocacy organisations experienced an increase in demand, however, one in four had less capacity to take on new clients[118]. Many disability advocacy organisations reported challenges with access to and use of technology to support their work, due to both a lack of funding to support their operations and the barriers faced by clients in accessing digital devices and the internet.

The impact of sustained low investment in the digital capability of disability advocacy organisations – and the risk this presents to service continuity – has been exposed during COVID-19. The Office of the Public Advocate (OPA) had been calling for support to boost its technology capabilities for years[119]. As part of its response to COVID-19, the Victorian Government provided additional funding for disability advocacy organisations, including $1 million in funding for OPA to reduce waiting times for services for people under guardianship and to provide new technology[120].

Despite the difficulties faced during emergencies, they can also present opportunities to try new ideas and service models. For example, the increasing use of technology during COVID-19 enabled:

  • The Victorian Office of the Public Advocate to expand its Independent Third Person service to more police stations where a local support person was not available[121]
  • VALID to redevelop its Staying Safe presentation and deliver six sessions online for All Abilities Advocacy. The sessions, which cover human rights, neglect and financial, emotional, physical and sexual abuse, were well received by participants who appreciated the chance to learn about these topics and talk to others in a group[122]

As we emerge from times of crisis, we must allow space to reflect on and retain unexpected benefits that improve outcomes for people and communities. Technology will never, and should never, completely replace face-to-face interactions and support; however, as COVID-19 shows, digital approaches can be used to complement and expand the reach of some services.

Support for women, children and young people experiencing family violence

Existing and emerging evidence shows domestic and family violence often increases during and after emergencies[123]. Women, children and young people with disability experience higher rates of all forms of violence and abuse, and often experience more intense, frequent and ongoing episodes of violence[124]. Women with disability who need daily assistance with personal care may be at greater risk during emergencies, as they may face a reduction in their support services and be reliant on perpetrators for support[125].

While some family violence services can transition to online or digital delivery during emergencies, there are limitations in these models that may particularly impact women with disability. For example, women with disability may not have independent access to technology or devices to seek help, may have less privacy and time alone due to the support they need from others, and may not be able to access crisis accommodation due to transport issues or the accessibility of facilities. Social distancing measures and the transition to online shopping may also place some people with disability at greater risk of financial abuse, where others take control of their finances and purchases. The disruptive nature of emergencies also limits access to safe spaces, reduces the visibility of violence and abuse, and limits opportunities for safe conversations with people who can help, including friends, neighbours, health professionals and family violence workers.

The full extent of family violence experienced by women, children and young people with disability during COVID-19 may not be evident until much later when public health risks have reduced. An Australian survey of women’s experiences of the first three months of the pandemic show 4.6 per cent experienced physical or sexual violence, 5.8 per cent experienced coercive control and 11.6 per cent experienced emotional abuse[126]. Among women who reported experiencing physical and sexual violence during this timeframe, one in three said it was the first time their partner had been violent towards them. Family violence services and crisis accommodation services must be resourced to respond to higher demand and to deliver timely, tailored and inclusive support for women, children and young people with disability.

Deliver an equitable recovery from emergencies

RECOMMENDATIONS

  • Ensure people with disability can access immediate and ongoing counselling and support for the mental health impacts of emergencies.
  • Make financial assistance, including recovery grants and insurance support, more accessible for all.
  • Apply universal design principles to enhance the accessibility of homes, communities and public spaces after disasters that impact physical and built environments.

While natural disasters, extreme weather events and major health threats cause great physical, financial and psychological hardship for all affected individuals and communities, for people who are already facing disadvantage, the impacts can be overwhelming, leading – in the words of one mother – to a “cascade of sorrows”[127].

People facing single of multiple forms disadvantage face greater barriers and challenges at all stages of a disaster, higher risk of becoming socially vulnerable, and are often hit hardest and longest by emergencies. Long-term recovery and reconstruction efforts tend to overlook the rights and needs of people with disability. Not only is this grossly inequitable, it’s a missed opportunity to learn and make changes informed by lived experience, and to ensure that cities and towns are accessible and inclusively resilient to future disasters. It is essential that emergency recovery includes and engages people with disability.

Many people with disability already experience high levels of psychological distress and social isolation[128], which may be exacerbated in times of crisis. Emergency situations are incredibly stressful, disruptive and traumatic – whole communities can be uprooted, friends and family divided, homes, livelihoods and, of course, lives can be lost.

The stress, trauma and grief of emergencies impact people in many ways and can place pressure on family and community relationships[129].

“It is awful – I can’t sleep at night, sometimes I think I will go out of my head I feel trapped in the house. It is very hard, sometimes I have good days and some days bad. Sometimes I feel the lock in is going on and on and on. I am very very bored.”
Effie, self-advocate in Melbourne[130]

Evidence shows between 5 to 40 per cent of people involved in an emergency event are at risk of sustaining severe and protracted psychological injury[131]. The cost of the social impact of natural disasters can, in many instances, outweigh the tangible financial costs; in Victoria, the estimated $3.9 billion cost of social impacts relating to the Black Saturday bushfires outweighed the direct financial impacts of $3.1 billion[132]. While governments increasingly recognise the social and mental health impacts of emergencies and disasters, responses and approaches are not always inclusive of, and accessible to, people with disability.

Most commentary on the current and long-term social isolation impacts of COVID-19 does not acknowledge people with disability[133]. During COVID-19, over half of children and young people with disability, or their families, responding to a survey by Children and Young People Australia (CYDA) reported a decline in their mental health[134]. More than 80 per cent of carers reported deteriorating mental health due and increased stress in their caring role[135]. Comprehensive mental health supports are sorely needed for people with disability, families and carers, both in the immediate and long-term recovery phases of disasters, but also before and beyond emergencies.

Financial and legal assistance can also be difficult for people with disability to access during the recovery phase of emergencies. Despite having higher living costs during and after emergencies, our members report people with disability often find it harder to access additional funds and recovery grants. Where crisis assistance programs are available, people often need support to navigate the complexities of eligibility requirements and lengthy paperwork. While rigour around the provision of funding and grants is important, processes and policies around these programs should not create unnecessary barriers for people rightfully seeking financial aid. Insurance policies are another area of confusion and stress for many people after an emergency. There should be greater support including legal advice for people to understand and access support from their insurer.

The impact of emergencies and disasters on the built environment, including homes, towns and vital infrastructure, can present additional barriers for people with disability. It can be harder to stay safe and well without appropriate accommodation, aids and equipment, and access to essential support services. The post-emergency phase of rebuilding homes and communities presents a chance to ‘build back better’ and improve accessibility and inclusion through the adoption of universal design principles[136].

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[137]. Embedding universal design in projects from the outset is not only more cost-effective, but enables more people to participate in social, economic and community life.

Emergency recovery can be strengthened by building awareness of universal design among government, builders and insurers, and applying universal design principles to reconstruction initiatives.

[1] Empowered Lives, empoweredlives.vcoss.org.au.

[2] Empowered Lives, Joint Statement: Supporting Victorians with disability during the COVID-19 pandemic, 8 July 2020.

[3] United Nations, Policy Brief: A Disability-Inclusive Response to COVID-19, May 2020, p.2.

[4] Australian Red Cross, Relationships matter: the application of social capital to disaster resilience,

National Disaster Resilience Roundtable report, September 2012.

[5] VCOSS, The social impact of natural disasters – at what cost?, 2 May 2016, VCOSS, Disaster and disadvantage: Social vulnerability in emergency management, 2014.

[6] Disabled People’s Organisations Joint Statement, Open Letter to the National Cabinet: Immediate Actions Required for Australians with Disability in Response to Coronavirus (COVID19), April 2020, p.5.

[7] United Nations, Sendai Framework for Disaster Risk Reduction 2015 – 2030, p.13.

[8] VCOSS, Disaster and disadvantage: Social vulnerability in emergency management, 2014.

[9] Australian Civil Society CRPD Shadow Report Working Group, Disability Rights Now 2019…, July 2019, p.22.

[10] Ibid.

[11] Australian Department of Health, COVID-19 National Health Plan – Aged Care – Aged Care Preparedness, 13 May 2020.

[12] The Hon Greg Hunt, Protecting the lives of Australians with disability during coronavirus, 18 April 2020.

[13] VCOSS, Bringing people with disability into emergency planning, 22 November 2016.

[14] M Villeneuve, B Dwine, M Moss, L Abson and P Pertiwi, Disability Inclusive Disaster Risk Reduction (DIDRR) Framework and Toolkit: A report produced as part of the DIDDR Queensland Project Series, November 2019.

[15] M Villeneuve, J Sterman and GL Llewellyn, Person-Centred Emergency Preparedness: A process tool and framework for enabling disaster preparedness with people with chronic health conditions and disability, 2018.

[16] Collaborating for Inclusion, COVID-19 Planning Resource for People with Disability, March 2020.

[17] R Buchanan, COVID-19 contingency planning: everything actually worked!,6 May 2020.

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

[19] Ibid.

[20] M Villeneuve, B Dwine, M Moss, L Abson and P Pertiwi, Disability Inclusive Disaster Risk Reduction (DIDRR) Framework and Toolkit: A report…, November 2019.

[21] Ibid.

[22] Australian Red Cross, Relationships matter: the application of social capital to disaster resilience,

National Disaster Resilience Roundtable report, September 2012.

[23] United Nations Office for Disaster Risk Reduction, UN global survey explains why so many people living with disabilities die in disasters, 10 October 2013.

[24] University of Sydney Centre for Disability Research and Policy, Disability inclusive and Disaster-resilient Queensland: Cross-sector Learning about Disability Inclusive Disaster Risk Reduction (DIDRR) in four Queensland Communities, Issue 1, No. 6, 2019; S Kilham, Bushfire planning leaves behind people with disabilities, The Conversation, 22 January 2014.

[25] Australian Red Cross, Resources to help you: Prepare for disasters.

[26] Australian Red Cross, Relationships matter: the application of social capital…, September 2012.

[27] Council of Australian Governments, National Strategy for Disaster Resilience, February 2011.

[28] J Mithen, Z Aitken, A Ziersch and A Kavanagh, Inequalities in social capital and health between people with and without disabilities, Social Science & Medicine 126 (2015) 26e35, 2014.

[29] Australian Red Cross, Relationships matter: the application of social capital to disaster resilience,

National Disaster Resilience Roundtable report, September 2012.

[30] Australian Red Cross, Guidance Note: Disability Inclusion and Disaster Management, November 2015.

[31] Australian Institute for Disaster Resilience, Handbook 5: Communicating with People with a Disability: National Guidelines for Emergency Managers, 2013, p.7.

[32] United Nations, Convention on the Rights of Persons with Disabilities (CRPD) – Article 9; Article 21.

[33] Australian Civil Society CRPD Shadow Report Working Group, Disability Rights Now 2019…, July 2019, p.33.

[34] Deaf Australia and ASLIA, Joint Statement: Access to information related to the COVID-19 outbreak and containment effort, 23 March 2020; M Boseley, There have always been barriers for us’: how Covid-19 has further isolated deaf Australians, The Guardian, 19 May 2020, accessed at on 20 May 2020.

[35] H Dickinson and S Yates, More than isolated: The experience of children and young people with disability and their families during the COVID-19 pandemic. Report prepared for Children and Young People with Disability Australia (CYDA), May 2020.

[36] P Singhal, One-fifth of Australian adults have limited literacy and numeracy: OECD, Sydney Morning Herald, 15 February 2019.

[37] Wellington Shire Council, Sample video from Disability communication e-learning module, March 2020.

[38] Expression Australia, Coronavirus (COVID-19) updates.

[39] People with Disability Australia, Accessible resources.

[40] The Autism Educator, What is the coronavirus?.

[41] Australian Institute of Disaster Resilience, Handbook Collection: Community Engagement for Disaster Resilience Handbook web page, accessed on 18 May 2020.

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

[43] Disability Advocacy Network Australia (DANA), DANA eNews – Advocacy Resources, Webinars, Jobs,

14 May 2020.

[44] Ibid.

[45] World Health Organisation, Press release: WHO announces COVID-19 outbreak a pandemic, 12 March 2020.

[46] Hon Greg Hunt, Media release: First confirmed case of novel coronavirus in Australia, 25 January 2020.

[47] Disabled People’s Organisations Joint Statement, Open Letter to the National Cabinet: Immediate Actions Required for Australians with Disability in Response to Coronavirus (COVID19), April 2020.

[48] People with Disability Australia, People with Disability and COVID-19, June 2020.

[49] Caring Fairly Coalition, COVID-19 Carer Survey: Summary of Results, May 2020.

[50] Social Ventures Australia and the Centre for Social Impact, Will Australian charities be COVID-19 casualties or partners in recovery? A financial health check, June 2020.

[51] VCOSS, Climate change resilience of community organisations, data from VCOSS Survey 2019, unpublished.

[52] 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, Centre for Social Impact Sydney, February 2020.

[53] VCOSS, Hazelwood Mine Fire Inquiry Submission, May 2014, p.14.

[54] J Magarey, People with disabilities refused exercise, healthcare as homes take coronavirus rules too far, The New Daily, 18 May 2020.

[55] N Cortis and G van Toorn, The disability workforce and COVID-19: initial experiences of the outbreak, Social Policy Research Centre, UNSW Sydney, May 2020.

[56] N Cortis and G van Toorn, The disability workforce and COVID-19: initial experiences of the outbreak, May 2020.

[57] H Dickinson, G Carey and A Kavanagh, Personalisation and pandemic: an unforeseen collision course?, Disability & Society, 35:6, 1012-1017, June 2020.

[58] The Hon Josh Frydenberg, Media release: Making it easier for charities to access JobKeeper, 5 April 2020; The Hon Stuart Robert, Media release: New measures to support NDIS participants and providers through COVID-19, 21 March 2020; Council of Australian Governments, Meeting of the COAG Disability Reform Council Communique, 9 April 2020.

[59] National Disability Services, Australian Disability Workforce Report, July 2018.

[60] VCOSS, Submission to the Federal Joint Standing Committee on the NDIS Workforce Inquiry, April 2020.

[61] IDEAS, eBility.

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

[63] C Green, H Dickinson and G Carey, Debates in disability and health policy: Health inequities and the social determinants of health for working-age Australians with disability, 2018.

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

[65] Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Health care hearings, Sydney.

[66] Empowered Lives, Joint Statement: Supporting Victorians with disability during the COVID-19 pandemic, 8 July 2020.

[67] Hon Greg Hunt, Media release: COVID-19: Whole of population telehealth for patients, general practice, primary care and other medical services, 29 March 2020.

[68] Australian Department of Health, Management and Operational Plan for People with Disability: Australian Health Sector Emergency Response Plan for Novel Coronavirus (COVID-19), April 2020.

[69] NDIA, Specialist Disability Accommodation Provider and Investor Brief, April 2018, p.5.

[70] AIHW, Bulletin 149: Disability support services: services provided under the National Disability Agreement 2018–19, May 2020, p.21.

[71] J Quall, R Barker and C West, Experiences of individuals with physical disabilities in natural disasters: an integrative review, Australian Journal of Emergency Management, Volume 33, No. 3, July 2018.

[72] Ibid.

[73] E Young, What it’s like to experience a bushfire evacuation while living with a disability, SBS News, 8 January 2020.

[74] Find A Bed, About us.

[75] Hon Richard Wynne, Media release: More Homelessness And Public Housing Support In COVID-19 Fight, 18 March 2020.

[76] H Dickinson and S Yates, More than isolated: The experience of children and young people with disability and their families during the COVID-19 pandemic. Report prepared for CYDA, May 2020.

[77] Ibid.

[78] Australian Coalition for Inclusive Education, Providing inclusive education for children and young people

with disability in a ‘time of crisis’, May 2020.

[79] H Boon, L Brown and P Pagliano, Emergency planning for students with disabilities: a survey of Australian schools, Australian Journal of Emergency Management, Volume 29, No. 1, January 2014.

[80] Association for Children with a Disability, Submission to the Inquiry into the Victorian Government’s Response to the COVID-19 Pandemic, June 2020.

[81] VCOSS, Lessons from remote and flexible learning: Submission to the Education State, July 2020.

[82] N Hermant, N Campanella and L Kent, Parents of children with disabilities are struggling to teach their children during COVID-19, ABC News, 6 May 2020.

[83] Caring Fairly Coalition, COVID-19 Carer Survey: Summary of Results, May 2020.

[84] AIHW, Bulletin 149: Disability support services: services provided under the National Disability Agreement 2018–19, May 2020, p.22.

[85] VJ Cornell, L Cusack and P Arbon, Older people and disaster preparedness: a literature review, The Australian Journal of Emergency Management Volume 27, No. 3, July 2012; World Health Organisation, Ageing and life course: Emergencies and older people.

[86] H Boon, Preparedness and vulnerability: an issue of equity in Australian disaster situations, Australian Journal of Emergency Management Volume 28, No. 3, July 2013.

[87] Australian Civil Society CRPD Shadow Report Working Group, Disability Rights Now 2019…, July 2019, p.39.

[88] AIHW, People with disability in Australia: Income and finance, September 2019.

[89] Australian Department of Social Services, Consultation report – to help shape the next national disability strategy (beyond 2020), December 2019, p.17.

[90] Australian Civil Society CRPD Shadow Report Working Group, Disability Rights Now 2019…, July 2019, p.39.

[91] 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.

[92] H Dickinson and S Yates, More than isolated: The experience of children and young people with disability and their families during the COVID-19 pandemic. Report prepared for CYDA, May 2020; Caring Fairly Coalition, COVID-19 Carer Survey: Summary of Results, May 2020.

[93] Australian Department of Social Services, Factsheet: Information for Disability Support Pension and

Carer Payment recipients in response to COVID-19, 30 April 2020.

[94] Carers Australia, COVID-19 income support and other Government measures: Carers Australia policy response, March 2020.

[95] People with Disability Australia, People with Disability and COVID-19, June 2020.

[96] Caring Fairly Coalition, COVID-19 Carer Survey: Summary of Results, May 2020.

[97] Consumer Policy Research Centre, COVID-19 and Consumers: from crisis to recovery, June 2020.

[98] J Norman, ‘Early access superannuation scheme estimated to hit $42 billion in coronavirus support’, ABC News, 30 July 2020, accessed 6 August 2020.

[99] Empowered Lives, Joint Statement: Supporting Victorians with disability during the COVID-19 pandemic, 8 July 2020.

[100] H Dickinson and S Yates, More than isolated: The experience of children and young people with disability and their families during the COVID-19 pandemic. Report prepared for CYDA, May 2020, p.13.

[101] ABS, 4940.0 – Household Impacts of COVID-19 Survey, 12-15 May 2020, June 2020.

[102] IDEAS, Grocery shopping during the COVID-19 pandemic, 15 May 2020.

[103] NDIS, Priority home delivery services, accessed on 20 May 2020.

[104] AIHW, People with disability in Australia: Employment, September 2019.

[105] Australian Human Rights Commission, Willing to Work: National Inquiry into Employment Discrimination Against Older Australians and Australians with Disability, 2016, p.6.

[106] Disabled People’s Organisations Australia and National Women’s Alliances, The Status of Women and Girls with Disability in Australia, November 2019, p.35.

[107] Disabled People’s Organisations Australia, Violence, Abuse, Exploitation and Neglect Against People with Disability in Australia Available Data, March 2019.

[108] Disabled People’s Organisations Australia and National Women’s Alliances, The Status of Women and Girls with Disability in Australia, November 2019; 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

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

[110] Peer Connect, The importance of informal supports.

[111] Disability Advocacy Resource Unit, What is disability advocacy?, 2016.

[112] VCOSS, Submission to the Victorian Parliament’s Inquiry into Abuse in Disability Services: Stage 2, November 2015.

[113] VCOSS, Delivering on the promise: a better and fairer NDIS, VCOSS submission to the Review of the NDIS Act and the new NDIS Participant Service Guarantee, October 2019.

[114] Ibid.

[115] VCOSS, A smooth NDIS transition: VCOSS submission to NDIS Joint Standing Committee inquiry into Transitional Arrangements for the NDIS, August 2017.

[116] Social Ventures Australia and the Centre for Social Impact, Will Australian charities be COVID-19 casualties or partners in recovery? A financial health check, June 2020.

[117] Office of the Public Advocate, COVID-19: A message to People with Disability from Victoria’s Public Advocate, Colleen Pearce, 25 March 2020.

[118] Disability Advocacy Network Australia (DANA), DANA eNews – Advocacy Resources, Webinars, Jobs,

14 May 2020.

[119] Office of the Public Advocate, Annual Reports 2018-2019, 2017-2018, 2016-2018.

[120] Hon Luke Donellan, Media release: Supporting Victorians With Disability During Coronavirus, 6 May 2020.

[121] Office of the Public Advocate, eNews: Remote safeguarding update – OPA Updates May 2020, 28 May 2020.

[122] VALID, VALID enewsletter #32, 28 May 2020

[123] D Parkinson and C Zara, The hidden disaster: domestic violence in the aftermath of natural disaster, Australian Journal of Emergency Management, Volume 28, No. 2, April 2013; The Lookout, COVID-19 and Family Violence, accessed on 20 April 2020.

[124] Disabled People’s Organisations Australia, Violence, Abuse, Exploitation and Neglect Against People with Disability in Australia Available Data, March 2019.

[125] The Lookout, COVID-19 and Family Violence, accessed on 20 April 2020.

[126] Australian Institute of Criminology, Statistical Bulletin 28: The prevalence of domestic violence among women during the COVID-19 pandemic, July 2020.

[127] VCOSS, Disaster and disadvantage: Social vulnerability in emergency management, 2014, p.4.

[128] AIHW, People with disability in Australia, September 2019.

[129] VCOSS, The social impact of natural disasters – at what cost?, 2 May 2016.

[130] Empowered Lives, Joint Statement: Supporting Victorians with disability during the COVID-19 pandemic, 8 July 2020.

[131] Victorian Department of Health and Human Services, Psychosocial support: a framework for emergencies, 2014

[132] Australian Business Roundtable for Disaster Resilience & Safer Communities, The economic cost of the social impact of natural disasters, March 2016.

[133] Brotherhood of St Laurence, COVID-19 Insights: People with disability, May 2020.

[134] H Dickinson and S Yates, More than isolated: The experience of children and young people with disability and their families during the COVID-19 pandemic. Report prepared for Children and Young People with Disability Australia (CYDA), May 2020.

[135] Caring Fairly Coalition, COVID-19 Carer Survey: Summary of Results, May 2020.

[136] Australian Red Cross, Guidance Note: Disability Inclusion and Disaster Management, November 2015.

[137] Victorian Health and Human Services Building Authority, Universal design, accessed on 21 June 2020.