Source: Infoxchange Australia [Andrew Lowcock]

Facts and figures:

On 30 June 2006, there were 6731 people under the age of 65 who were residing in Australian aged care centres, of which 1049 were under 50 years old. It costs about $80,000 to $100,000 per year per person to support someone with high care needs, according to Bronwyn Morkham, national director of the Young People in Nursing Homes Alliance. A Senate Committee reported there were thousands of others at risk of entering nursing homes.

Why is it an issue?

All of these people have high and specific care needs, and their families are unable to care for them full time, commonly for financial reasons, or because no-one is able to be with them all the time. So families try to find accommodation for them, but often all they can find are places in nursing homes intended for the elderly, where staff is normally not trained to deal with the needs of a younger person. Nursing homes are not designed for rehabilitation, which younger people seek to rebuild their lives, especially those who have suffered catastrophic injuries, similar to the story of Grayden.

Also, in nursing homes, young people often have nowhere to go and the activities undertaken at the home are not catered with young people’s interests in mind, making them prone to social isolation. "One of the really sad things is they (young people) become terribly isolated in nursing homes and there’s no resourcing to get them out, no money for foster care or no money for a support worker, the money that they receive is pretty much taken up by their accommodation in the nursing home – they have no money. So they’re just stuck there," says Dr Morkham.

What’s being done?

At a February 2006 meeting of the Council of Australian Governments (COAG) it was decided to launch a five-year $244 million program to reduce the number of young people in nursing homes, to be jointly funded by the Commonwealth ($122 million) and the states and territories ($122 million), which would target those under 50. The program was designed to provide alternative residential care, improve support services for those who stay in aged care and for those at risk of entering nursing homes. Western Australia and the ACT were the last two jurisdictions to sign up to the agreement almost a year later, in early 2007.

Victoria’s contribution to the program is named ‘My Future, My Choice’. One of the projects undertaken involves the construction of a 10-bed specialist unit in Melbourne for people who need 24 hour care, due to completed in 2008. This is the first centre of its kind to be built in Victoria. There will also be opportunities for young people to live in small staffed units in the community and specialist wings of nursing homes designed specifically for young people. In Queensland, a non-profit organisation named Youngcare has raised enough money to begin building the Youngcare Apartments in Brisbane, which will cost $4.5 million and have 16 beds, which it expects to complete by June 2007.

What if young people don’t want to move?

Sometimes it is not convenient for young people to be moved out of nursing homes, because they may be separated from their families, or a centre doesn’t suit their particular needs. As Bronwyn Morkham says, that’s why it’s important for the young people and their families to be in control of their own destiny by making the decisions themselves. "None of us expect to be told where we should live and nor should they," she says.

"As a rule of thumb, we are advocating that any service development, no matter what it is, has to be done in consultation with these young people and their families. And that’s especially true if you’re looking at somebody moving from an aged care facility into a community setting."

The ‘My Future My Choice’ program offers people the chance to be part of the planning and assessment process, to identify which model of care best suits their needs.

Is this the end of the issue?

No. Only people under 50 years of age have been targeted for now, which Dr Morkham calls a wonderful first step. If $244 million is needed to cater for 1000 people, simple maths indicates that it would cost more than a billion dollars to cater for about 6500. So Dr Morkham has some plans that would help towards the realisation of her ultimate goal, a national long-term care and support strategy.

"In the short-term, we’ve been encouraging all governments to look at having a no-fault insurance scheme for catastrophic injuries. In Victoria, we have the Transport Accident Commission that’s seen as one of the world’s best. There are no young people in nursing homes under the TAC," she says.

"But they were insured against that while driving. So the Victorian Government’s actually taking a very, very important step and it’s looking at expanding the TAC scheme a little bit, to a point where we might be able to cover injuries sustained in, say, football. You’re playing football and you get a bad knock and you break your neck. At the moment, you’ll end up in a nursing home because there’s no money to give you the support or the rehab."

Dr Morkham’s long-term solution is the introduction of a Medicare-style levy to fund a long-term strategy that is based on need, not age, and will help to not only support, but rehabilitate young people.

"We are all very, very grateful and very happy to pay our Medicare levy and our taxes because it gives us back the free healthcare when we need it. Nobody’s discriminated against.

"I talked with some actuaries who’ve worked in this area and they say that because young people who are likely to need a lifetime of long-term care and support are a comparatively tiny proportion of the elderly demand, you have the time to build capacity in such a scheme."

Why does it matter to you?

Dr Morkham hopes there will be a long-term national strategy soon, because although people do not like to contemplate it, a catastrophic injury or serious illness could hit anybody at any time. "What would any of us want if we were in that situation? I think the biggest message of all is for people to be quite clear that anyone of us could find us facing this at any point in time. We’re all vulnerable."

Read more about Bronwyn Morkham in this 'A Day in the Life' feature.