PM - Tuesday, 17 June, 2003 18:38:00
Reporter: Rachel Carbonell
MARK COLVIN: For elderly Australians, moving into a nursing home is often a traumatic experience that marks the end of their independence. But when disability forces a young person into a nursing home it often means the end of independent life before its even started.
Many younger people who live in aged care facilities say it's like going to jail, only it's easier to get out of jail. More than 400 young disabled Australians living in nursing homes, their families, carers and advocacy groups have gathered in Melbourne to renew their plea for a better life.
Rachel Carbonell reports.
RACHEL CARBONELL: In 1999 Hamish Farndon suffered a drug overdose and his brain was starved of oxygen. Doctors said he would be in a vegetative state for the rest of his life – but they were wrong.
HAMISH FARNDON: I couldn't speak then. I was PEG fed, couldn't even pee, couldn't feed myself.
RACHEL CARBONELL: You've obviously had a pretty good recovery then?
HAMISH FARNDON: I have, yeah, I've blown them away.
RACHEL CARBONELL: How long have you been living in a nursing home for?
HAMISH FARNDON: Quite a few years.
RACHEL CARBONELL: How do you find it?
HAMISH FARNDON: Depressing and boring. It's just not stimulating towards (inaudible) recovery. Sometimes I just wish I was dead.
RACHEL CARBONELL: Why is it boring and depressing?
HAMISH FARNDON: People die all the time. All your friends die. And I rage against that.
RACHEL CARBONELL: How would you like to be living?
HAMISH FARNDON: Independently. As I get better, my chances of independence are getting bigger and bigger.
RACHEL CARBONELL: Do you think that you're too young to be in a nursing home?
HAMISH FARNDON: I do, yeah, it's depressing, it's God's waiting room. It's not conclusive to recovery. It drives me crazy sometimes. Can you imagine? I'm only 37.
RACHEL CARBONELL: Hamish's sister Jane says with the right support, Hamish's dream could come true.
JANE FARNDON: Each individual that is a young person in a nursing home has different needs and requirements to one another, but ultimately I would like to see Hamish living independently with carers, where he has the ability to fit into the community and live with equal rights as everybody else has.
RACHEL CARBONELL: 20-year old Michelle Newland has a similar brain injury to Hamish, after suffering a severe asthma attack 18 months ago. Her mother Ann doesn't want Michelle to celebrate her upcoming 21st birthday in an aged care institution.
ANN NEWLAND: She was studying to be a teacher. She was in uni studying to be a teacher, she was very outgoing, loved life and lived it to the fullest and loved her friends. The effect, I suppose, is now she's you know she's lost a lot of things. She must be grieving for the things that she… yeah, I can see you nodding Shell… grieving for the things that she can't do at the moment.
RACHEL CARBONELL: What is it like for her living in a nursing home?
ANN NEWLAND: I imagine it would be tough. Shell, what it is like for you living in a nursing home? Have you got a word there? Is it hard for you?
MICHELLE NEWLAND: Yes.
ANN NEWLAND: It is, Michelle's words, she's just learning to say words and sentences and she's doing extremely well. I imagine it's very hard. When we have her home on weekends she doesn't want to go back.
RACHEL CARBONELL: There are 6,000 people under 65-years old in Australian nursing homes. They may have sustained brain injuries from a car accident, poisoning, a drug overdose a fall or a viral infection. They may have Multiple Sclerosis or another disability requiring 24-hour care.
20 to 30 years ago many people would not have survived trauma which caused the disability. Because of modern medicine more people are surviving, only there is often nowhere for them to go when they recover, except nursing homes.
The Young People in Nursing Homes Consortium is once again calling on state and federal governments to commit to a united system to help these people stay out of institutions and to live better lives.
Consortium member, Dr Mark Sherry, who suffered multiple brain injuries in a hit and run car accident ten years ago, has done a PhD thesis on independent living for disabled people and alternatives to institutionalisation.
MARK SHERRY: We have rights, we have entitlements, we deserve to be living in the community. We do not deserve incarceration. You have more chance of getting out of a prison than you do out of a nursing home and that is not fair. We have done no crime, it is no crime to be disabled.
MARK COLVIN: Dr Mark Sherry, from the Young People in Nursing Homes
Consortium, talking to Rachel Carbonell.
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