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Losing Sleep over Aids
& Equipment
I have a five year old
daughter, who has cerebral palsy resulting from a rare complication
of twin pregnancy called twin to twin transfusion. Penelope is a
surviving identical twin - her sister did not survive the complication,
and was stillborn. Having just had a particularly sleepless night
worrying about funding for Penelope's communication device and her
need for a wheelchair, I've decided it is time to put on the record,
from first hand experience, some of the costs being faced by families
of children with a disability and the inadequacy of government funding
for aids and equipment.
Penelope needs a great
deal of support to do even the most basic things. She can not sit
or stand unaided, walk or talk, toilet or feed herself without a
great deal of help. Despite these problems, she has a bright personality,
an infectious smile and a great sense of humour. She genuinely brings
warmth into the lives of those who know her, and tries very hard
to be as independent as she can. She understands all we say, and
you can see she would dearly love to communicate more with us, beyond
the head nodding, hand gestures and occasional word like sounds
she can use now. She is quite capable of shouting at her little
brother when he pinches her toys!
Bath chair $720. Specialised
car seat for when the child has grown out of a baby seat - $780.
Chair for eating and playing on - $1,500. Standing frame to allow
weight bearing and stand up play - $2,500. Walker - $10,000 (including
ongoing maintenance). Supportive potty seat $1,500. Wheelchair $9,500.
So far the total is $26,500, and that doesn't include the $15,500
communication device we have spent the last 18 months fundraising
for. These are only current equipment needs; I'm not even going
to attempt to list the medical or therapy expenses.
I¹ve even spent
$27.50 on an adapted spoon so Penelope would be more successful
at feeding herself. At the time, it seemed such a lot to spend on
a SPOON, that it was a month later before I could bring myself to
allow her to use it, in case it got damaged.
There is some government
funding to help provide for these items. Of the $42,000 listed above,
the government would fund about $10,000 (after you have sat on a
waiting list for up to one year). So families are either out of
pocket (and there is no way the average family could fund all these
things), or relying on charitable organisations and trust funds
to make up the difference. Many miss out. There are some wonderful
organisations out there attempting to make a difference. In a lot
of cases these consist of individuals getting together and holding
lunches or raffles or walks, donating their time and effort to make
up the shortfall. The Lions Club paid for Penelope's walker (and
are continuing to pay for its maintenance) without any fuss or waiting,
or intrusive questions about our financial situation.
I do not wish to cry
poor. We are not poor. My husband earns a good income, we are buying
our own house and have no worries about food or clothing. But if
we can't manage to provide all these things for our daughter on
our income, then there must be a lot of children who have disabilities
who are missing out. And do you know something else IT IS
VERY STRESSFUL. Even if at the end of the day we have managed to
scrounge together enough for the communication device and the wheel
chair and even a new special trike ($570 frivolous or leg
strengthening? you decide), there has been an enormous amount
of stress involved. Writing letters, and asking for money, and worrying.
Quite frankly, I have a daughter with high support needs and two
other children who are missing out. I've had enough. Why can't we
have an entitlement system? If a child with a disability has a need
for aids and equipment, they should simply just get it - without
a waiting list and without families having to fundraise!
Liz Manning
This article is an extract
from a longer piece where Liz makes the case for a Transport Accident
Commission (TAC) style 'no fault' levy to pay for a substantial
increase in funding for disability support services. Look out for
further discussion of the levy idea in future editions of NoticeBoard.
Meanwhile, if you'd like
to add your experience to the debate about government policy and
funding for aids and equipment, we'd love to hear from you.
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