When Home Is Not Where The Heart Is

The place we call home has a unique and significant role in our lives. It is our safe haven, the place we can be ourselves, our foundation. But every week, more than 40 younger people in Australia move into their new home of a residential aged care facility.

There are more than 6000 people aged under 65 living permanently in residential aged care across Australia. We know that for those people it’s a life that is lonely and more excluded from peers. Vital research by the Summer Foundation tells us that more than half of younger people living in residential aged care receive a visit from a friend less than once a year, and 82% seldom or never visit their friends. Almost half seldom or never participate in activities in their local community. For more than 1000 younger people each year, it will be the last place they ever live: of the people leaving residential aged care, more than half leave due to death, while only 11% return to their own home.

Part of the problem is that the two systems - the disability support system and the aged care system - have different aims. The NDIS Act is clear that the aim of the Scheme is to support independence, enablement and social & economic participation. The aged care system often focuses more on slowing the rate of loss of autonomy that is seen as a natural part of ageing. The NDIS is about growing and building links with family, community, employment and social networks, whereas the aged care system aims to maintain those links that have already been built over the course of a lifetime. The average age of a person entering permanent residential aged care is 83 years old, while in the last quarter alone 73% of active Participants were aged under 45 years old. It’s often difficult to see how residential aged care is compatible with the aims of the NDIS.

In addition to this, there are hundreds more people using residential aged care as a short term accommodation option. All in all, that’s a pretty damning picture of the NDIS marketplace. It’s difficult to imagine how younger people end up living in an aged care facility, but there are a number of reasons:

  • Lack of suitable housing options locally

  • Relationship or family breakdown

  • Complex health needs that hospitals or disability support providers may struggle with (particularly if governments are unable to find a way of making the NDIS : health system interface work)

  • Delays in getting an NDIS Plan, or NDIS Plan is unsuitable

People within the Scheme have very diverse goals about where they want to live - some people love living in group home arrangements, others wouldn’t consider it. Independent Living Options are music to some people’s ears, while others prefer to live at home with family. What we can all agree on is that residential aged care is not a suitable place for younger people with disabilities. Our governments agree.

In 2008 (well before NDIS was formalised and rolled out), COAG acknowledged that aged care services are not designed to meet the needs of younger people with disability and that specific support services are required. In 2015, a Senate Inquiry recommended a national register of every younger person living in residential aged care (which is yet to happen), to address how invisible and hidden many people living there are. In early 2019, the Australian Government released a Younger People in Residential Aged Care Action Plan, aiming to reduce the number of people with disabilities living in facilities, which includes involvement of the NDIS. We know there are some younger people living in residential aged care that choose to stay there, whether through a lack of other housing options, a lack of support choices (especially people accessing palliative supports), concerns about being a  “burden” on their family, or other reasons. But that’s a pretty depressing view: “I’m best off living somewhere that everyone agrees isn’t the right place for me, because there’s nothing else suitable.”

The Royal Commission into Aged Care Quality and Safety recently held a hearing specifically about the experience of younger people in residential aged care. While we’ll need to wait for the final report to see all submissions, the experiences of people at the public hearing were characterised by loneliness, depression, fighting the system, a decline in health and eventually an early death.

Of those younger people living in residential aged care, around 60% have been deemed eligible for the NDIS and around 3000 (roughly half) have an active Plan (these rates have increased significantly in the last two years). In the most recent Quarterly Report, 2.2% of people who received a Plan in the quarter were living in residential aged care. Although average total Plan funding is low for Participants living in residential aged care ($105,000, with almost three-quarters of that covering aged care costs), the rates of people living in aged care entering the Scheme have increased substantially since rollout began as the Agency has made these people a priority. Although there are still very concerning individual statistics within that progress: 173 people living in residential aged care were found ineligible for the Scheme, and only 66 had SDA approved in an NDIS Plan...it doesn’t bear thinking about what the future looks like for those groups.

The NDIA has committed to establishing a Complex Needs Pathway specifically for younger people living in residential aged care. In practice, it will include quicker access to the Scheme for people living in residential aged care, Planners with specialised training, and a focus on looking at alternative housing options including home modifications or Specialist Disability Accommodation where suitable. In announcing this, the Agency included a subtle line that bumps more responsibility back to the market, stating that “key to the success of this plan is the availability of facilities for Participants to move into”. Firstly, the use of the word ‘facilities’ is either a clumsy oversight or a worrying insight into what the Agency sees as independent housing options that support people to live an ordinary life. Does anyone, NDIS Participant or otherwise, really want to live in a ‘facility’? Secondly, the Agency can’t underplay it’s role in creating a market where options for people to leave residential aged care are developed sustainably. It’s unrealistic to expect providers to step up to the plate when for several years getting SDA approval in Plans has been a battle, there has been instability in SDA investment, assistive technology approvals have been inconsistent, significant hours of Support Coordination to explore alternatives has become more difficult to access, other service systems (like the health system) are unclear about their role...the list goes on. The newly announced pathway should alleviate some of these systemic problems but it will take time, and cooperation from all parties. 

Solving the problem needs multiple systems to work together. If a greater number of and more diverse dwellings need to be built, the Agency needs to offer security of investment so properties can be truly co-designed and individualised. If there are younger people living in aged care that don’t know about the Scheme, aged care providers need to be trained to support their residents to access the NDIS. Hospital Social Workers need to be supported to better understand how the health system can support a person leaving hospital to go to their choice of home, not straight into residential aged care.

Life in residential aged care is no life for a younger person with a disability. It’s easy to see these statistics and feel deflated at the size and scale of the challenge of getting younger people out of residential aged care. It’s even easier to feel that way on hearing the experiences and stories of people living it and families affected by it. But it’s important to remember that the NDIS is an incredible, once-in-a-lifetime opportunity to line up the support systems needed to move younger people out of residential aged care. There are those who will respond that with every challenge with the rollout of the NDIS, 6000 people in a pool of 475,000 total Participants is a small cohort, yet the NDIS is as much about (arguably more about) individual stories as it is about systemic change. For those people and their families, the NDIS can help create more than just a home.