The research report describes young people with complex disability as “one of the most marginalised groups in Australia”, with little choice or control of where they live. Many are forced to live in residential aged care facilities because they have nowhere else to go.

The research team compared the support needs and lives of 173 young people with complex disability living in shared supported accommodation (SSAs) in Victoria, NSW and the ACT, with information we already have about young people living in aged care.

It found that in a typical week these (mostly) young people in SSAs spent more time with friends and family, travelling outside the home and participating in community based activities, compared to young people with disability living in aged care.

But even in small-scale supported accommodation young people with complex disability still had low levels of social interaction, working, studying or volunteering.

The research team also found that people with complex disability in small-scale supported accommodation usually need daily support with a number of every day activities, most often linked to their complex health issues.

5 key findings

Based on the research, key implications for how the NDIS is designed are:

1. The health and disability supports for NDIS participants with complex healthcare needs must be recognised and coordinated.
2. Scheme participants and family members, NDIS planners, and policy makers need education and capacity building to help them plan for the range and complexity of supports required by young people with complex disability. Participants will also need this support before their NDIS plan is approved.
3. Lifetime care costs and outcomes will be improved with early intervention within an insurance model approach, by engaging young people during the planning process, as they enter residential aged care or other accommodation such as SSAs
4. There needs to be coordination of supports, delivered by people who have experience in working across the health and disability sectors to properly meet the needs of people who are at risk of entering residential aged care or long term hospital admission.
5. Participation can be improved by investing in more small-scale, well located and designed supported accommodation, but there is more work to be done to build the social and economic participation of people with disability with complex needs.

The report says there are three key factors that will help the NDIS address the support needs of young people with complex disability:

1. Assistive technology;
2. A range of housing options, and
3. A focus on information, co-ordination and “capacity building” to make it easier for young people with complex disability to access services such as health, employment, education and public transport.

The research project was led by Summer Foundation, Yooralla, Monash University’s Occupational Therapy Department and Multiple Sclerosis Limited.

Further reading

Full report: Consideration for National Disability Insurance Scheme Design.

Media Release: Urgent action needed to co-ordinate health and disability supports.

The Conversation: Sorry, not my department – why the NDIS and health systems need to collaborate.