Anj Barker was 16 years old when she was bashed to near death by her ex-boyfriend. She sustained permanent, profound brain injuries. After many months she was released from hospital with such high care needs that her parents were unable to look after her at home. There was no alternative but nursing home placement, an experience Anj describes as ‘‘pure hell’’.
There are more than 600 people under 50 in Australia forced to live in nursing homes simply because there is nowhere else for them.
Young people living in nursing homes is a multifaceted problem, but with continued effort it is an issue that could be resolved within the next decade.
Research by the Summer Foundation and Monash University has found that 21 per cent of younger people in nursing homes never go outside, 34 per cent never have the opportunity to participate in community-based activities such as shopping, leisure pursuits or visiting friends and family, and 53 per cent receive a visit from a friend less than once a year.
This group of people are effectively excluded from society.
As Anj told us: “Nursing homes are a place that people go to die, not a place for young people to live.”
In 2006 the Council of Australian Governments funded a five-year, $244 million Younger People in Residential Aged Care program. The program, which ended last year, was a good start and made a tremendous difference to the lives of the people who received funding through it, allowing them to either move out of, or avoid going into, a nursing home.
In Victoria, 22 shared supported-accommodation services were developed for 104 young people as alternatives to nursing homes.
People who have moved out of nursing homes through this initiative (and their families) reported marked improvements in their quality of life, as well as opportunities to make everyday choices and participate in daily activities.
However, since this program ended, the system has largely begun reverting to the way things were in the past and younger people are once again at risk of placement in nursing homes.
This month the federal government announced that 21 organisations across Australia would share in the $60 million Supported Accommodation Innovation Fund to provide housing and respite for people with disabilities.
These services will be delivered by mid-2014 and demonstrate innovation that has been sadly lacking in housing for people with disabilities in the past.
The fund will provide new accommodation options for 53 people with disabilities in Victoria. However, this program needs to be put into context. In December 2009 there were 1291 people with disabilities with a critical need for supported accommodation in Victoria – thus the fund will address a need for only 4 per cent of this group.
The issue of young people in nursing homes is one clear reason we need the national disability insurance scheme proposed by the Commonwealth government. Such a scheme would provide funding for the support people such as Anj need to live in the community. Although bipartisan support appears likely, the scheme will not be fully implemented until 2018 or 2019.
In the meantime, while the accommodation projects are constructed, and the scheme is shaped, what happens to younger people with profound disabilities who are at risk of placement in nursing homes? They wait, and they experience the social isolation and lack of choice and control that a previous group of young people in nursing homes experienced before the start of the Younger People in Residential Aged Care initiative more than five years ago.
We have come full circle, with no real change to the system faced by this marginalised group of vulnerable Australians.
The national disability insurance scheme promises once-in-a-lifetime disability reform. It must be delivered in a planned manner, and the model has to be based on the best evidence available regarding effective and sustainable delivery of lifetime support to a group of people with complex and varied needs.
In the short term, while this planning is undertaken, more individualised funding support and innovative accommodation places must be provided for this group. We need services that prevent new admissions to aged care and create pathways back to community living.
Slow-stream rehabilitation and transitional services will give people with severe brain injuries in acute hospitals the time they need to demonstrate their potential before they are forced into nursing homes.
If the government does not change the system and invest in other accommodation models, individualised support and alternative pathways, hundreds of people under the age of 50 will continue to be admitted to Australian nursing homes each year.
Dr Di Winkler is the chief executive of the Summer Foundation and director of Building Better Lives. Libby Callaway is a lecturer in the department of occupational therapy at Monash University.
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