Disability inclusion should involve more community connections, Sarah Byrne believes

July 16, 2020

Sarah Byrne has a job she loves, can catch the bus to work and is about to begin living on her own for the first time.

Born with Down syndrome, Ms Byrne needs some help understanding how to look after herself and build relationships — but she leads a very full life.

“I do netball, I do rock ‘n’ roll dancing, bowling, cheerleading. Then I meet my friends and catch up with them,” she said.

“I do have a very busy, social butterfly life.”

At home, Ms Byrne has a support worker — who she has known all her life — to help with her daily routine.

“I see them every day, and they do shopping, cooking, helping me to manage my friendships and relationships, taking me to places,” Ms Byrne said.

But she knows what it is like to feel invisible.

Ms Byrne is an inclusion worker for the South Australian Council on Intellectual Disability (SACID) and helps provide feedback on new programs.

Friends Bek Touzeau and Sarah Byrne sit on a park bench, smiling at the camera
Sarah Byrne (right) with her friend and colleague, Bek Touzeau.(ABC News: Helen Frost)

SACID executive director Felicity Crowther said she had been delighted with Ms Byrne’s growth in the position.

“She has gone from maybe helping to set up things at the workshop, to now co-facilitating a lot of the workshop and doing that really confidently,” Ms Crowther said.

Ms Byrne’s friends, co-workers and family ensure she is safe and looked after, but not everyone with a disability can build such strong ties with their community.

Disability expert Sally Robinson highlighted the death of Adelaide woman Ann Marie Smith as an example.

Ms Smith appeared to have had limited connections with anyone outside of her carer.

Disability care recipient Ann Marie Smith.Disability care recipient Ann Marie Smith.
The circumstances surrounding Ann Smith’s death caused public shock.(Supplied: SA Police)

Professor Robinson said one in three young people with a disability experience some form of abuse, and that risk increases with the level of care they need.

Her research shows isolation is a major problem for people with physical and intellectual disabilities, and she found that, where possible, they would like a say in their own care plans.

“Their priorities are around feeling comfortable, feeling safe, feeling known, and feeling their communities are accessible to them — places where they feel not only physically able to go, but where they feel welcome,” Professor Robinson said.

“I think a lot of people are not aware that only 10 per cent of people with disability use the NDIS [National Disability Insurance Scheme] … so the NDIS is not the answer to everything.”

Community effort needed to drive change

Ms Smith’s death has prompted several inquiries into disability care, but Professor Robinson said such responses sometimes “don’t get to the fundamental issue”, and are only part of the solution.

“We can put in place more and more safeguards for people with disability,” she said.

“But until we put our resources into preventing harm happening in the first place, we’re responding to problems that have already happened in people’s lives.”

Professor Sally Robinson smiles at the camera for her professional headshotProfessor Sally Robinson smiles at the camera for her professional headshot
Professor Robinson said one in three young people with a disability experience abuse.(Supplied: Flinders University)

South Australian Council of Social Service CEO Ross Womersley said change would not happen without investment and community effort.

“We have to embrace people, we have to decide that people who live with disability, who might be vulnerable are in fact of value to us as a community,” he said.

“By being present, people would be much more likely to build relationships, not necessarily because they’re paid to be with them.

“The more that people are kept separate, the less they have the opportunity to make those relationships that we all rely on to stay safe and secure through most of our lives.”

Mr Womersley said a common response of governments was to implement another inquiry or royal commission.

Although he acknowledged the need for such steps, he believes it is sometimes also necessary to go back and “start at the beginning”.

He would like to see inclusion for people with disabilities from an early age so they are included in all aspects of school life, to teach the community about building relationships.

“Without that support and without that clarity about what’s going on, the person is just likely to continue to live in community without attention and we all know the best support we can get is love,” he said.

Ms Byrne’s job gives her the opportunity to build those connections.

“If Sarah didn’t come to work, we would be really worried about her and we would follow up on that straight away,” Ms Crowther said.

“If somebody doesn’t have those places that they go regularly, and people that miss them, that puts them at really great risk.”

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