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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