A lack of suitable accommodation tops the list of problems faced by younger people living with disabilities, according to new research, with thousands of Australians under the age of 60 languishing in nursing homes indefinitely and many others in housing inadequate for their needs. The survey, conducted by the Summer Foundation and Empirica Research, also found an overwhelming majority of Australians believe the government should be taking more steps to resolve the issue.

It’s estimated there are around 3500 people under the age of 60 currently living in nursing homes across the country. It’s difficult to know the exact number of those who are under 30, as the Department of Health and Ageing has suppressed some figures in order to protect the privacy of individuals. What is known, though, is that those who are in nursing homes are often excluded from the community.

The National Disability Insurance Scheme may help with some accommodation concerns. While the Coalition has said it would not privatise or wind back the disability reforms, Treasurer Joe Hockey flagged the possibility of contracting out some administrative functions in order to cut costs and streamline services — the pilot program has cost almost a third more than anticipated, and the full rollout will not receive any further funding than originally promised. But even if fully funded, the NDIS would not get young people out of nursing homes.

The NDIS was launched by the Labor government last year in response to the Disability Care and Support inquiry. The report found Australia’s disability system was “underfunded, unfair, fragmented, and inefficient”. Although Di Winkler, founder and CEO of the Summer Foundation, says the NDIS is a once-in-a-lifetime reform, she says it will not solve the issue of young people in nursing homes by itself.

“The NDIS is great for young people in nursing homes and a critical first step,” she told Crikey. “But the next thing we need to do is increase the scale of affordable housing. While the NDIS will provide people with greater opportunities to participate in the community, it was never set up to develop the scale of housing required for people with disabilities in Australia.”

Past research by the Summer Foundation and Monash University found 53% of people under the age of 50 living in aged-care facilities are visited by a friend less than once a year. And 33% do not have the opportunity to participate in the community through activities that most of us take for granted. These include basic tasks such as going to the supermarket or visiting family members.

So how do we begin to address this complex issue? Winkler says the responsibility lies with government, the housing market and the wider community.

“It would be more cost effective to stop people going into aged care in the first place than to try to get them out later,” she said. “And that’s where the NDIS can help to have more support and resources, putting the modifications into the family home. The other thing we’d really like to see is public, social and private housing working together with disability organisations to develop accessible and affordable housing.”

Winkler cites the example of a housing project in Melbourne where residents living with disabilities will be included in the community but still have access to the support services they need. Six apartments for people with disabilities are spread throughout the larger complex, with a workplace on site with disability support workers able to provide 24-hour care and support if necessary.

“Rather than building separate housing for people with disabilities, we should actually routinely think about allocating housing to people with disabilities and set an outreach model for the people that live there. If people are given quality, well-located and accessible housing they will become less dependent on paid support,” she said.

Despite recent media coverage of young people in aged care following the announcement of the NDIS, 61% of respondents in the Summer Foundation survey said they were aware of the issue — down from 68% the previous year. Winkler says we need to act sooner rather than later.

“If we don’t do something now there will be 200 people admitted to nursing homes in Australia that are under 50 each year,” she said.