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Realising it pays
to think ahead with disability we have already started looking into
secondary schools for Natalie and Juliet who are at present only 7. A
popular misconception is that all schools now have to be accessible
– they don’t, as schools, transport and clubs are
specifically excluded from that part of the Disability Discrimination
Act (would you not think education was about the most basic right?)
Two schools in our
authority are wheelchair accessible. Fortunately, one is a school we
like even if it is 20 miles away&ldots;.the fun will be to get
able-bodied twin Juliet into it as the school is well out of
catchment. As the charming Head said “I’m sure you’re
used to fighting battles”!
Parent power is
starting to assert itself as all local authorities are now obliged to
start up a Parent Forum. The theory is that education and health
organisations will be called to account. Therapies (lack of) and
information (lack of) were the bugbears that emerged at our first
meeting – we will see whether it becomes an ineffective talking
shop or leads to some real action. Goodness knows there is a need for
informed keyworkers – one parent (with a 6 year old disabled
child) had never heard of Disability Living Allowance and another
with a 10 year old was not aware of the Carers Allowance.
One real success
we had recently was getting the charity REMAP to amend Natalie’s
footplate on her new manual wheelchair. The manufacturers were unable
to get the footplate to swing away for ease of transfer in and out of
the chair. We contacted REMAP who sent out Alan, a charming retired
metallurgist to see if he could help. Within 10 days and over the
busy Christmas holiday Alan had done it. What a fabulous
organisation. If anyone needs something a little out of the ordinary
made/adjusted try REMAP. They have done all sorts of weird and
wonderful contraptions!
Please do ring us
up for a chat if ever you want to talk over any issues. Speaking for
myself, I know there are times I feel we are the only people in the
world with certain issues. (In my mind at the moment is the feeling
of not being able to call upon anyone else to do a school run or pick
up one’s child because of the wheelchair. One can feel very
tied. Not to mention the fact the disabled child would dearly love to
go off in a friend’s car for a playdate and have a little
independence). Sometimes just picking up the phone and sharing
something with someone who understands/faces similar problems is so therapeutic!
Chris (Mr
“Brief and To the Point”!) is going to tell me off when he
sees the length of this article! It is always a joint effort and I am
the long-winded one!
Till the
spring&ldots;..Chris and Laraine Brown |