REVIEW OF PACE PARENTS’ HANDBOOK
Constructive Campaigning for Autism Services
By Anne Sutcliffe
Most of us parents have
been through the formidable, exhausting process of fighting to get specialist
education for our autistic children.
But even if we’re among the lucky ones and we’ve managed to ensure our
own child has one of the UK’s 7,500 specialist school places, we’re acutely
conscious that with 90,000 autistic children in the country, the majority of
families cannot get the same deal.
Many parents are channelling their frustration over this into
campaigning for better autism services so that other parents don’t have to go
through what they’ve been through.
What’s been lacking up
till now is a guide to point out tried and tested methods of campaigning,
together with potential pitfalls. Now
at last we have it. The PACE Parents’
Handbook “Constructive Campaigning for Autism Services” has just been
published, following extensive consultation with parents. It’s very encouraging reading, with
heart-warming success stories, for example, of parent action in some areas
bringing about allocated funds each year for early intervention programmes.
The book explains how
to find out who does what in local govt, and gives the low-down on potential
pitfalls, such as what to do if you suspect your council is not taking you
seriously, and when do you
approach your MP or publicise your
cause in the local press. And the
biggest potential pitfall of all is alienating LEA staff by being angry and
assuming they don’t care. The point is
made very heavily that the key to success is
being patient and conciliatory, and restraining yourself to one or two
issues when you want to hit them over the head with a million things.
There were times when I
found it hard to accept the author’s business-like approach. There is only one mention of parental grief
at the devastating impact of autism on a family, and I wanted to jump up and
down and shout “Yes! Yes! Yes!” when I read it. But the author is right.
It isn’t fair, but anger doesn’t get you anywhere, and
parent-campaigners are certainly more effective when they keep a lid on their
feelings. The book also opened my eyes
to the fact that many LEA officials get as frustrated as parents with the slow
pace of progress, though they can’t always voice this.
This is an excellent
and illuminating book that sums up the nugget of the problem, which is how hard
it is to balance supporting services that are under pressure with the needs of
children with disabilities which are becoming more complex and occurring more
frequently. It points to the ideal
scenario as being where parents and LEAs can jointly inspire those higher up to
work for change.
Here in Surrey, Sara
Truman and other parent-campaigners have fostered good relations through
regular meetings on education with Surrey County Council. There are no funds available to meet the
long-term aim that probably everyone would support – the building of a new
autistic school in Surrey. However, to
take some of the pressure off Linden Bridge and Fremantles, more places for
autistic children are being provided at two MLD schools – the Abbey in Farnham
and West Hill in Leatherhead. A new
site is being sought for Fremantles school that will allow it to expand to take
secondary school pupils. We’d all like
to see more, of course, from a Surrey-based specialist autistic boarding school
along the lines of Prior’s Court in Berkshire or the Forum in Dorset (we can
dream!) to more training in autism for staff at MLD and SLD schools.
© Anne Sutcliffe 2005.
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