NSW — If you
have had any sort of temporary physical disability, then
you might be able to comprehend how difficult life can
become for individuals, particularly children, who have a
lifetime of permanent disability ahead of them. Po Yi
Leung reports on the frustration experienced by
children and families at the lack of available equipment
to help them live independently.
Posted April
2006
Imagine what it would be like for a
child to be restricted in their movement due to their
physical disabilities. Without the aid of a mobility
device, the condition of their disability deteriorates,
and also denies children the chance of becoming
independent people in society.
Robyn Chapman, Executive Officer of
the Physical Disability Council of NSW agrees that apart
from physical challenges, children are also vulnerable to
social influences. “Society should want that child
to grow up as equal as their peers being able to choose
to do activities, and participate fully in those
activities,” said Chapman. “Without those
mobility items, children may have to sit at home on the
floor and doing nothing,” she said.
A wheelchair costs between $3000
and $5000, even up to $10,000 if the child requires a
complex seating system. It is an amount few Australian
households can afford. Alison Carmichael-Rulten,
Marketing Manager of the Spastic Centre is concerned
about the impact of these costs on the families that need
them most. “Thanks to current advances, technology
is now playing a huge role in giving people with
disabilities the chance to lead more independent and
fulfilling lives than ever before,” said
Carmichael-Rulten. “However, with some pieces
costing as much as a small family car, much of this
technology remains out of reach for many ordinary
Australians,” she said.
“Disability equipment, whether
it be wheelchairs, walking frames, bar sticks, lifting
aids, anything like that is very important. Not only for
the family but it’s also the first step of
independence for any child before they actually grow up
into an adult,” says Greg Minahan, Managing and
Founding Director of AMC Children’s Foundation.
“That equipment is very important. Its like - I want
to make myself a cup of coffee, but I won’t be able
to use a spoon to do it.”
The NSW Health Program of
Appliances for Disabled People (PADP) was established in
1982 to provide eligible citizens who had permanent or
long-term disability with appropriate appliances and
devices on a low-payment basis. Chapman thinks PADP has
the potential to become a highly valuable government
disability program. However, the difficulty with PADP is
that the current budget of $21.8 million is not
sufficient to provide all the equipment people need. The
result is long waiting lists for equipment, leaving
families and children at a crossroads.
In May 2005, the Department of
Health made the first attempt to measure the waiting
lists. It estimated that there was $5.5 million worth of
equipment families were waiting for at the time. The
latest updates of that figure will not be available until
next month.
The competitive funding environment
of PADP leads to a lengthy and complex assessment
process. “It’s not uncommon to wait for a
wheelchair for 18 months to two years,” said
Chapman. “Walking sticks and walking frames can
actually be provided much sooner than that. But for
wheelchairs, beds, all those sorts of things you wait
much longer,” she said.
Long waiting periods for equipment
means children with disabilities fail to take the first
steps of independence as early as they could, to reduce
the level of the disability at an early stage.
Furthermore, the continuous absence of equipment
increases the burden on the whole family in terms of the
time and effort needed to take good care of the child.
Greg Minahan, Managing and Founding
Director of AMC Children’s Foundation says that with
any sort of transportation such as a wheelchair, the
family does not have to pick up the child and constantly
help them 24 hours a day, seven days a week. “They
[disabled children] need to feel they’re an
independent person, to do things by themselves,”
said Minahan. “If they don’t have the equipment
they are not going to do that and they’re going to
think ‘I’m really worthless’,” he
said.
The Spastic Centre’s
Carmichael-Rulten agrees. She says that being able to
stand up and look somebody eye to eye with the help of
lifting aids and walking frames, can help build
confidence in children and offers a lot more benefits for
them to participate in society like their
peers.
To allow the children to have
maximum ability to grow with minimum impairment, an
appropriate piece of equipment really helps when it can
be obtained at an early stage. “While the children
are still growing, while their bones are still
developing, if you can get [them] a program as
early as say two months after birth, you’ve got the
window of opportunity that you could actually straighten
the limb,” said Minahan. The only other option for
many children is multiple rounds of painful surgery.
According to Chapman, the impact of
a child with a disability on the entire family system,
and especially to other children, can be problematic.
“Particularly if family resources are having to be
directed to that child, to support that child, and then
the siblings’ resentment may build up over the
numbers of years,” she said. “And when parents
pass away, the children who build up resentment over the
years have to support their brother or sister but it may
not be appropriate to do that,” said
Chapman.
Minahan is clear that something
needs to change with regard to mobility equipment waiting
lists. While waiting for assessments and procurement of
the aids, he says life is extremely difficult for the
families. “If you take the equipment completely out
of the equation … I think the life, not only for the
carer of the family but for the person as well, would be
hell,” Minahan said. No one wants to be watched and
looked after all the time. Everybody wants to go wherever
they want, when they want, how they want.
