Young People with Disability

26 November 2019

Today I add my voice to those calling for urgent action to prevent younger people with disability from living in aged care, and, certainly, for much stronger action than that announced by the government yesterday.

The interim report of the aged-care royal commission concluded:

Now that the National Disability Insurance Scheme exists, the Royal Commission does not accept that the problem is intractable, only that there has been a lack of will and effort to address the issues that have left younger people to be accommodated in aged care.

In response to the royal commission's findings of neglect and failure in our aged-care system, the government has announced an additional $4.7 million to meet new targets to stop young people with disabilities being placed in aged-care facilities. The federal government says that no-one under the age of 45 should be living in aged care by 2022 and no-one under the age of 65 by 2025. The revised targets are welcomed, but my fear is that the government's insipid response won't deliver on that promise.

Nationally, there are around 6,000 people under the age of 65 living in permanent residential aged care. In Geelong and south-west Victoria the number is 155. This is despite the fact that the NDIS has operated in the Geelong region for six years already. Article 19 of the 2006 Convention on the Rights of Persons with Disability says that it's a human right that persons with disabilities have the opportunity to choose their place of residence and are not obliged to live in a particular living arrangement.

Last weekend I had the privilege of meeting Kirby Littley and her parents, Carol and Kevin. Kirby is in her mid-30s, but when she was 28 she was working as a teacher. She had just bought her first home, but then she was diagnosed with brain cancer. Following emergency surgery, Kirby suffered two strokes, leaving her with significant mobility and communication issues. After being in hospital for nearly a year, Kirby was admitted to aged care. She was given no other choice. Kirby spent a year in the nursing home, where she missed vital rehabilitation and often had her communication aids removed, and her life was scheduled to the nursing home timetable.

Of course, Kirby didn't want to be in aged care. She wanted to live her own life and not have that life dictated by an institution, especially one focused on the latter years of life. She is not alone; Kirby's parents became her fiercest advocates, and worked hard to get NDIS funding to modify their house so they could bring their daughter home. Kirby now lives independently in an SDA funded home. But I ask: what about those who don't have powerful advocates and supports like Kirby does? Kirby and her parents gave evidence at the aged-care royal commission. I acknowledge their courage in speaking out about this crisis for younger people stuck within aged care.

The government's response of $4.7 million is totally inadequate. By my calculation, even if only 3,000 people chose to move to independent living across Australia, that would amount to a pitiful $1,570 each. I contrast that with this year's federal budget. The government took an alleged $4.6 billion underspend by the NDIS back into general revenue so they could announce a budget surplus. They defended that action by claiming that the NDIA could have spent that money if there had been a demand for more services. They continue to argue that there was no demand and therefore there was no cutting of the NDIS budget. On this side, we completely disagree. Here is a very well-documented need, to get as many of these 6,000 younger people as possible out of aged care. There is clearly a need, and there should be a demand as well.

There is clearly a market failure in providing properties. Neither the government nor the NDIA are willing to act to get the hundreds of houses built or modified, and yesterday's press release didn't change that. It promises yet another housing audit and yet another task force but no actual building. At a time when our national economy is stalling, stuff such as infrastructure spend would seem to be a no-brainer. The $4.7 million interim response smacks of tokenism. It smacks of a government knowing it needs to be seen to address an issue but not really wanting to tackle it head on. The government needs to provide sufficient resources to ensure that the new targets are met, otherwise Kirby Littley's journey to independence will be an isolated success story.