“We are all the experts in our own lives.” Disability Ageing and Carers

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

ANALYSIS

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

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

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

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

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

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

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

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

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

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

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

But the plan isn’t perfect.

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

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

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

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