New National Disability Insurance Scheme (NDIS) data shows there are more than 5,400 people under 65 living in residential aged care. There were more than 6200 in 2017 but the numbers are way too high and account for about five per cent of all aged care beds. The number of younger people entering residential aged care each year is still more than 380.

The aged care system is designed to support the needs of older people, not younger people with disability. Nursing homes just don’t have the equipment, staff levels or medical knowledge to look after the health and wellbeing of a young person with fluctuating and very individual needs.

The Aged Care Royal Commission hearings highlighted the problems having younger people in aged care creates for younger people but also for aged care facilities and other residents. When the Commission released its damning interim report in October 2019 it recommended getting younger people out of residential aged care as one of three areas for immediate action, describing it as a “national embarrassment” and “human rights issue”.

Specialist Disability Accommodation (SDA) is one solution to help young people access the rehabilitation needed to restore health and independence; and to live in the community as other able-bodied young people do.

Young people in aged care mostly have an acquired disability, as a result of catastrophic injury or through progressive neurological diseases, with complex support needs. They require support from different parts of the health and welfare system including health, disability and sometimes aged care.

They often end up in aged care from the hospital system. Once acute care is no longer needed, the hospital, understandably, looks to discharge the person as soon as is possible in order to free up beds.

But there are barriers to young people moving from the health system to specialist disability housing, rather than aged care, that we must urgently address.

The Australian Government has new targets to tackle this problem. It wants no people under the age of 65 to enter residential aged care by 2022, none under the age of 45 living in residential aged care by 2022 and none under the age of 65 will in residential aged care by 2025.

Prior to the Commission’s report it had developed a national action plan, commenced a new NDIS Complex Support Needs Pathway and announced significant reforms in SDA to improve choice and control for eligible NDIS participants, build market confidence and drive stronger investment.

But eligible people need to have SDA included in their NDIS plans up front so they, or the people who support them, can commission a home from the market that suits their individual needs.

The problem is that NDIS processes mean it takes time to get SDA in a plan and people with disabilities are not getting NDIS funding quickly enough to modify their houses or look for an SDA home.

Residential aged care facilities have places readily available while there has been a shortage of suitable disability housing and the NDIS has been much less responsive. Health practitioners lack knowledge of NDIS pathways and processes. NDIS processes delay hospital discharge so staff look for “easier” options such as aged care.

The national action plan aims to give young people in aged care with access to specialist NDIA planners via the Complex Support Needs Pathway to help them to exit and avoid residential aged care. We need support coordinators who can tap into housing and support options including SDA but many are unaware of the available SDA.

SDA providers are building more special disability housing. Compass Housing Services has vacancies in modern, high support, homes. We need more awareness of SDA amongst people with a disability, their families, and others in the community. I recently spoke to a mother of a person with a disability, who is also a disability worker, who was unaware of SDA and the need for it in NDIS plans.

Every day I have the joy of seeing people with disabilities thriving in this new accommodation. They are learning new skills as they are supported to live more independently, in the community, rather than an institution.

Let’s work together to make this a reality for more people with disabilities, including those trapped in aged care.