In The Politics of Autism, I discuss red tape. I also discuss the need for more study of the issue in other countries.
A WEEK before we left for our wedding/holimoon in Jersey, a large, brown envelope from the Department for Work and Pensions dropped onto our doormat. My heart sank as I knew what was inside - Ryan's Disability Living Allowance renewal forms. This dreaded paperwork sends shivers right through me and every parent/carer that I know.
The document is 42 pages long, with a lot of specialist questions requiring very in-depth answers. There was no way I was even going to look at it until we got back home because of all the final preparation needed for the wedding and holiday, so I filed it at the top of my very extensive 'to do' list. And there it stayed for the rest of the school holidays, staring at me and I'm sure I could hear it keep whispering to me "Fill me in, fill me in, time is ticking. You don't want to lose Ryan's entitlement do you?"
No, of course not, but it's very time consuming and actually extremely depressing to complete and you need to be in the right frame of mind to tackle it, never mind the fact that Ryan requires 1:1 adult supervision at all times so I physically couldn't do it either.I psyched myself up to tackle it once Ryan was back at school and tackle it I did. I had to gather lots of evidence in the form of reports from professionals he is under and his current statement of special educational needs in order to back up the essays I wrote for every single question.
A report was also needed from 'someone that knows the child, asking how their condition affects them. I sent two, one by Ryan's previous teacher who knows him inside out and all of his complexities and one by my husband Lee, which was four pages long.
My answers to the questions amounted to an extra 14 pages on top of the 42 in the official renewal form. It was a mammoth task to complete and it actually took me THREE WEEKS to get it all done to my satisfaction, whilst the ironing pile resembled the Leaning Tower of Pisa and the housework was well overlooked.