KERRY O'BRIEN: When we think
of a nursing home it conjures up images of older people,
many in the last years of their life. But thousands of
young people with severe disabilities or debilitating
illness find themselves forced to live in one, simply
because there's nowhere else they can get the care they
need. It's not good for their health and it takes away
much needed aged care beds. Now state and federal
governments say they want to address the problem. Is it
just talk, or can something be done? Mark Bannerman
reports.
SALLY MILNE, MOTHER: Good work,
good try, keep going, you're doing really well, come on.
MARK BANNERMAN: Her name is Allegra
Milne-Salter. Flanked by her mother, Sally, and her
father, Dale, she's trying to introduce herself the best
way she knows how.
COMPUTER: Hello, my name is Allegra
Milne-Salter.
MARK BANNERMAN: It's tough, but for
this young woman, taking up a challenge is nothing new.
SALLY MILNE: Really well done. Good
girl.
MARK BANNERMAN: Despite a profound
disability that makes her unable to talk and quadriplegia
that confines her to a wheelchair, Allegra Milne-Salter
went to school like most other children.
SALLY MILNE: I think it made her
very happy because she loved being at school. She loved
school from day one. Absolutely loved it.
MARK BANNERMAN: In September last
year, Allegra Milne-Salter graduated high school. It
should have been a time of rejoicing. It was not. While
her classmates planned their future thinking of work and
university, the future for this young woman requiring 24
hour a day care narrowed down to just two options: remain
here at home on her parents farm, forcing them to give up
their jobs and live on welfare, or to take a place in
this aged care facility, 40 kilometres away in a nearby
town. In the end, they chose the nursing home. It was a
painful decision.
SALLY MILNE: For everybody, and I'm
not just talking about the family and Allegra. The staff
at the nursing home have been very compassionate, very
caring, they've bent over backwards to try and look after
her and meet her needs.
MARK BANNERMAN: It's still really
hard for them?
SALLY MILNE: They know it's not the
right place for her, just as we do.
MARK BANNERMAN: This is hardly a
situation any parent would relish, and Sally Milne is no
exception. Four days a week she travels 40 kilometres
into town in a specially set-up van to bring her daughter
home.
SALLY MILNE: And we could leave
Allegra in the nursing home and, you know, she would have
nothing to do apart from the activities organised at the
nursing home, which really aren't age appropriate for
her, for an 18-year-old.
MARK BANNERMAN: Arriving to pick
her up only reinforces her deep concerns. Despite
top-flight care at the nursing home, it's plain to see
this young woman is far from happy.
ALLEGRA MILNE-SALTER: (Moans)
SALLY MILNE: I think that she is
very unhappy. I think that she is very angry with us,
because she's there. I think that no matter how much she
knows that we love her, she doesn't want to be there.
MARK BANNERMAN: Why not, can I ask
you?
SALLY MILNE: Because there are no
other able-bodied, talking, walking, normal, healthy
18-year-olds there that she can converse with or share
time with or do things with, and she's used to that.
MARK BANNERMAN: Sadly, this kind of
story is not unique and it is not new. Four years ago on
this show, we told the story of Lee Kellett. Just
21-years-old, he had suffered brain damage in an
accident. For his grandparents, there was just one option
- put him in a home with people three times his age. In
2002, they clearly hoped this was an interim measure. And
they made this plea to governments around Australia.
BRIAN KENNY, GRANDFATHER OF LEE
KELLETT: Please do something for the young ones, because
it is absolutely - they're our future, and it's their
future as well.
MARK BANNERMAN: Going back to meet
Lee Kellett four years later, we hoped something might
have changed, and in a way it had. The young man was in a
brand new nursing home with his own room and an ensuite.
But behind the smiles, there is also a sense that Lee
Kellett's life is deeply unhappy.
MARGARET KENNY, GRANDMOTHER OF LEE
KELLETT: I think a lot of it is boredom as well, because
the nurses just don't have time to be in there as often
as they'd like.
MARK BANNERMAN: For his
grandparents there is a potential solution. As they see
it, he needs to be in a home with people he can relate
to.
BRIAN KENNY: I think myself he
needs to be amongst young people. Being in with all the
old people, it's just not good for a young fella. It just
doesn't seem to work.
MARK BANNERMAN: If all this sounds
pretty grim, well it is, and the most extraordinary thing
about this story is that everyone we talk to say that
young people shouldn't be in aged care homes. The
question is, why isn't more being done to get them out?
Now the federal and state governments say that's exactly
what they're going to do.
JOHN HOWARD, PRIME MINISTER: We're
also together going to invest more in meeting the
challenge of the large number of younger people who
remain in nursing homes.
MARK BANNERMAN: After a landmark
meeting, the state and federal governments have now
pledged $244 million in matched funding over five years
to reduce the number of young people in aged care
facilities.
JOHN DELLA BOSCA, NSW AGEING AND
DISABILITY SERVICES MINISTER: I think very quickly
there'll be some serious improvements for people. We need
to be diligent and apply the funds where they're most
necessary and have discipline about the way we do that,
but I think we'll begin to see some immediate
improvements, certainly before the end of this year.
MARK BANNERMAN: These are brave
words indeed, even braver when you know that people like
Sally Milne and her husband have clear ideas about the
best way to use some of that money. Getting together with
a draftsman and community workers, they've developed a
plan for a new facility, funded in part by individual
families that would allow young people like Allegra
Milne-Salter to live together.
DALE SALTER, FATHER OF ALLEGRA
MILNE-SALTER: It would give her independence. It would
give her a chance of friendship, it would give her the
ability to be able to say, "This is my house and I can do
what I like with it".
MARK BANNERMAN: The question is,
how would the Government in NSW view such a proposal?
JOHN DELLA BOSCA: Very generally,
that is exactly what we're talking about. In the new
accommodation policy what we're talking about is one,
changing the funding model and looking at options for
people to make various contributions from their families,
or through not-for-profit organisations.
MARK BANNERMAN: Understandably for
Allegra Milne-Salter and her family, this is welcome
news.
SALLY MILNE: I've got this kind of
picture in my head of this wall of darkness with this
tiny little chink of light in the middle of it, and
that's what this is.
MARK BANNERMAN: Lee Kellett's
family, though, is a little less upbeat. Over five years
they have heard a lot of promises. Now they are waiting
for action.
BRIAN KENNY: Well, I think really
all you can do is just wait and see. I mean, you can't
tell what the Government will do. I don't think they know
themselves half the time.
KERRY O'BRIEN: Mark Bannerman with
that report.
