Heartbreak of young in aged care must end

Imagine the agony of putting your 16-year-old child into a nursing home because you cannot meet their care requirements at home.

This is a tragic reality for the parents and carers of nearly 6500 younger Australians under the age of 65 who have disabilities, including 510 West Australians.

Too often they have to put their dependants into aged-care facilities or inappropriate accommodation because there is nowhere else for them to go.

It was for this reason last November I initiated a Senate inquiry into the adequacy of existing residential care arrangements for young people with physical, mental or intellectual disabilities.

This year the Senate Community Affairs References Committee was given a rare insight into the life of a young person living in aged care during testimony from parents, family members, friends and young residents themselves at hearings across the country. The stories of these young people, who are consigned to the life of an elderly person because of a lack of accessible, affordable and suitable residential alternatives, were heartbreaking.

Most have few visitors because the environment is too intimidating. They are required to eat denture friendly food, and conform to the sleep, ablution and social routines of the elderly. As a result feelings of disempowerment, despair, desperation and a loss of dignity are common.

I was hit hardest by the story of Perth mum Kirstine Bruce who had to place her daughter Ariana into a nursing home at the age of 17 after she acquired a rare illness Anti-NMDA. Kirstine’s testimony was devastating. “As a mother of a child who now has a brain injury living in an aged-care environment, it rips my heart out watching her sit in a chair in front of the TV all day,” Kirstine said.

“The frustration and anger just rips my soul. No young teen or adult should have to live the life of an elderly person.”

Sadly, Kirstine’s story is just one of thousands. Alarmingly, the numbers continue to rise with more than 300 people under the age of 50 admitted to nursing homes each year and many more housed in inappropriate accommodation.

During her testimony in Perth last month, 61-year-old Robyn Keyte detailed her experiences living in aged care from the age of 32 after she sustained quadriplegia as a result of a motor vehicle accident in 1986. Robyn is now reliant on others for personal care and daily living. From 1994 to 2007 Robyn successfully secured funding through the disability services commission, which enabled her to live independently in the community.

Unfortunately, her State housing rental was burgled and trashed, and she lost everything after going into hospital for surgery in 2007.

The Department of Housing and Works no longer considered it safe for Robyn to live in the property and her funding was discontinued. She now lives in an inappropriate care facility, despite having lived independently with her disability for 13 years. She has been back in an institution for the past seven years, and she is rightly angry. “We are only allowed visitors up till nine o’clock and I have two young daughters that I would like to have to talk a bit longer,” Robyn said. “I have six grandchildren that I like having around, but it is a place where you cannot have six grandchildren.”

When I asked what her one wish would be, her answer was simple and heartbreaking: “To move out.”

After scratching the surface of this largely hidden social issue, the extent of the problem has become apparent as has the need for urgent and decisive action. It is clear these younger Australians crave freedom of choice to live a full and liberated life. Instead most feel stuck and see no way out. It doesn’t have to be this way and it must change. The rollout of the NDIS is a testament to how a rethink focused on the needs of the individual can change lives in a meaningful way, but this is only part of the picture.

I cannot pre-empt the committee’s findings or details of its final report, but it is my belief that Australia needs to develop an effective long-term strategy for more accessible and affordable housing for younger Australians living with complex needs and we must bridge the gap between health, housing and disability sectors.

The current “one-size-fits-all” approach and a tendency to categorise and allocate people on the basis of their illness or disability is not good enough. A recurring theme running through the testimony is the lack of communication and passing the buck between agencies and departments.

Providing accurate information to carers, families and to the young people themselves is a crucial step in ensuring they regain control over their circumstances. I am optimistic that the committee’s final report will include tangible and implementable policy solutions to change the lives of these young people. As a society we can and must do better.

Linda Reynolds is a Liberal senator for WA