Sunday, November 16, 2008

The Uphill Struggle To Claim Your Rights

This year, I have successful claimed two very important rights for my son Joe - who has Asperger syndrome - and our family. Firstly, his Statement of Special Educational Needs, and secondly, Disability Living Allowance. The first means that he now has his own Teaching Assistant throughout the school day, playtime supervision and extra specialist teaching. The second means that we get sixty-odd quid a week towards the extra expenses of having a kid with his special needs.

But each claim was a struggle up a very steep hill, which not only used up a lot of our time and energy but also made me realise that many people in a similar situation to us will not be getting these rights.

To apply for a statement, you have to fill in a form and write about your kids' condition and needs. It helps if you can get other people to write supportive stuff too, so we enlisted Joe's speech and language therapist, child psychologist, consultant paediatrician and inclusion co-ordinator at his playscheme. The initial result we got was a 'high incidence' statement - so called because it rules that your kid's special needs are so common that the school should be able to deal with them within its existing budget. So that's no good to anyone. In fact, as a retired school teacher mate of mine said, it can be worse than nothing, as the kid gets all the stigma of having a statement but none of the support that comes with it.

So we had to appeal. We wrote more text, and enlisted more people to write more text. The appeal succeeded, and Joe got a 'low incidence level 3' statement, which gives him the support listed earlier in this post.

I strongly suspect that our local education authority - Hackney's Learning Trust - has a standard practice of offering crap statements all the while planning to improve them on appeal. Perhaps they are hoping to save cash with the families who are too poor, unsupported, vulnerable, foreign, lacking in confidence, inarticulate, pressed for time, stressed out or just plain grateful for the slightest support to summon the strength to appeal.

Drafting an appeal is, after all, second nature to me and Joe's dad, as we are both union reps who have lost count of the number of appeals we have drafted for members.

The application form for Disability Living Allowance is about 80 pages long. I submitted it online, and had to come back to it day after day after day after day, wading through the sections, reviewing what I'd written, adding things I'd overlooked, making sure that it really did accurately describe Joe's needs, and answered all their questions, including the several confusing ones. When my partner announced to the family support group that we attend that we had successfully claimed the benefit, he got a round of applause, as many of the other families there had been defeated by the application process.

In my experience and opinion, the system is biased against poor and working-class families.

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