Lisa lives with multiple sclerosis. She used to live in aged care after being admitted there in her late 40s.

It isn’t living, it is existing. You are told what to do […] when to go to bed, what to eat, that isn’t life. It affects the person that I am.

Aged care is set up to support older people in their final years. It can’t adequately support younger people with ambitions, friends, goals and years of life to live.

In 2019, the Coalition government committed to measurable, time-bound targets to solve the issue of younger people in residential aged care by 2025. The federal government invested A$50 million in the aim of having no people under the age of 65 entering residential aged care by 2022, and no people under the age of 65 living in residential aged care by 2025.

With only six months to go, the current government is unlikely to meet the 2025 target. Australian Institute of Health and Welfare (AIHW) data released last week shows at end of 2023, 1,470 people aged under 65 (excluding First Nations people aged 50–64) were still living in aged care.

What has changed?

The gains have been mixed.

There has been a welcome decrease (the numbers are down 31% from the end of 2022). But this is largely due to people either dying (47%) or “ageing out” (24%) of the younger classification by turning 65.

The aged-care system is also making it much harder for younger people to enter residential aged care. The implementation of proposed aged-care legislation will further strengthen this position by making most people under 65 ineligible for an aged-care assessment. This will close the door to most new admissions of younger people.

The latest AIHW data describes two younger groups who are eligible for residential aged care “where it is their preference”: First Nations people and homeless people aged 50–64 years.

People who experience long-term homelessness are at risk of experiencing “accelerated ageing”, so they may benefit from early admission to residential aged care. However, it is highly likely hospitals will use “inadequate housing” as a loophole and go back to discharging younger people to aged care once the target period ends.

Helen lives with MS and lived in aged care for 7 years before moving out to specialist disability accommodation.

Significantly, the recent AIHW report excludes First Nations people aged 50–64 years from the data on younger people living in aged care. This may be because of reduced life expectancy (71.9 years for First Nations males, 75.6 for females). But it is critical to ensure each person’s housing preferences are considered to avoid systematic racism.

Moving out is not a magical fix

Moving out of aged care does not guarantee better outcomes or moving to more appropriate housing for younger people. In 2023, 59 people moved out of aged care and into specialist disability accommodation. Lisa moved out into new specialist accommodation a couple of years ago and is now “living life how she chooses”.

After seven years Lisa moved to new specialist disability accommodation.

However more people (89 in 2023) move out to “closed system” group homes (where a single provider is both the landlord and the provider of intimate supports such as personal care) with National Disability Insurance Scheme (NDIS) support or other accommodation where they are at heightened risk of violence, abuse, neglect and exploitation.

This is in part due to a lack of consistent, expert and independent help for those under 65 to explore their housing options. Young people in residential aged care who have a goal to move out are currently supported by National Disability Insurance Agency staff.

The roll out of housing and living navigators, as recommended by the NDIS Review, may provide the ongoing relationship required to ensure better outcomes for people with a need for access to 24/7 support.

Supply below demand

The NDIS and the market have failed to deliver quality housing and support options for people with a mix of complex disability and health needs, some 5% of NDIS participants.

A decade ago there was optimism in the disability community the NDIS would enable a range of innovative specialist and mainstream housing and support options.

But support provided in disability housing in Australia remains poor quality and expensive. The rising cost of support $10.2 billion per annum provided to the 5% of NDIS participants in supported independent living arrangements represents a quarter of total scheme payments. Ensuring home and living supports are fit-for-purpose will not only drive better outcomes for NDIS participants, it is critical to overall scheme sustainability.

Not driving innovation

There are no incentives for providers to redesign their service delivery and consider how technology might be used to enhance or replace support to NDIS participants.

Providers are financially rewarded for delivering as many hours as possible of in-person support, with no drivers for quality, fostering independence or delivering good outcomes.

The current funding model also reduces or replaces support from friends and the community, yet we know people with disability fare better with services designed to maintain or activate social and community connection and informal support. Lack of social and community connection leaves people with disability vulnerable to abuse, neglect and exploitation.

What a difference 5 years makes

In 2019, the targets seemed achievable.

Five years later the policy is a hollow victory for the hundreds of younger people in aged care and families who have told their story to senate inquiries, the Disability Royal Commission and the media to advocate for change.

Getting the NDIS “back on track” via amended legislation is a positive first step in building a scheme that drives innovative, high quality and cost effective supports in housing. Better is possible and affordable.

Di Winkler, Adjunct Associate Professor, Living with Disability Research Centre, La Trobe University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Image: https://jti.edu.au/

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