Senators hear first hand accounts from young people in nursing homes

The Senators at hearings this week were clearly engaged and moved by the statements of young people in nursing homes and their families. Ann Newland, mother of Michelle told the inquiry "I was absolutely shocked that the nursing home was our only option, how could the system give up on a 19 year old?". The current Senate Inquiry focuses on the adequacy of residential care for young people with disability, including young people in nursing homes. Families described the trauma of finding that hospitals planned to discharge their young person to a nursing home because there was nowhere else for them.

The Senate Inquiry has given a voice to a group of people who are the most disadvantaged and vulnerable people in our society. The Senate heard about the first hand experience of Sam and Daniel, both young people who are currently living in nursing homes. Sam is 30 years old and has lived in a nursing home for over a year. Yesterday, Sam told the committee "I want to live with other people my age". Daniel aged 51 told the committee "Thank you for the opportunity to let our voices be heard, everybody has different experiences, every individual needs to be listened to". In his submission to the inquiry, Daniel wrote "I have made a lot of friends here but they pass away too quickly, so I have made a resolution not to get attached to people because it's too hard."

Young people should not be forced to live in nursing homes because there is nowhere else for them. The National Disability Insurance Scheme (NDIS) is part of the solution; it will provide funding for the support that people need to live in the community. However, there are three key issues that need to be addressed: making sure young people in nursing homes get access to the NDIS, preventing new admissions of young people and increasing the number and range of housing and support options.

Based on current research and experience with previous government programs, most young people in nursing homes will miss out on the NDIS. They are unable to initiate and complete the registration process due to their cognitive and communication difficulties. They often have no one to advocate on their behalf. However, we are confident that with the momentum generated by the Senate Inquiry, some practical solutions can be developed to streamline the NDIS registration and planning process for young people in nursing homes. Getting these processes right in the NDIS trial site is critical prior to the national roll out of the NDIS.

Once young people move in to nursing homes it is hard to get them out – they lose skills and their social connections. It is critical that the NDIS collaborate with health to prevent new admissions of young people to aged care. We need transitional and slow stream rehabilitation services that give people the time they need to demonstration their potential before they are forced into nursing homes. While there are pockets of excellent transitional and slow stream rehabilitation services throughout Australia, we need a national network of these services.

The most difficult but an essential part of the solution is the need for more housing and support options for young people in nursing homes. Very few young people will move out of aged care facilities as a result of the NDIS because people need some where to live. The disability supports, equipment and home modifications provided by the NDIS are not enough. Australia desperately needs more housing that is both accessible and affordable. Housing for people with disability needs to be incorporated into mainstream housing strategy instead of continuing to build segregated and specialist housing – this will create the scale and range of housing options we need.

We are hoping that as a result of the Senate Inquiry, the federal government will provide strong leadership to ensure that young people in nursing homes do not continue to fall through the gaps. Young people in nursing homes need a more co-ordinated cross sector approach that involves health, housing and aged care rather than just looking to the NDIS to solve the issue alone.