End the Bureaucratic Pain

"Bureaucratic pain" is the phrase that Tory leader David Cameron used (see the July 16th Guardian) to describe the seemingly endless paperwork and protocols, assessments and waiting lists, that parents of disabled children and persons with disabilities face left and right. Take a quick tour of news stories about autism and not only is it apparent that getting access to services and programs is as much a Herculean task as figuring out what services and programs are needed.

In Kennewick, Washington, the July 18th TriCity Herald reports on the additional challenges faced by Hispanic families whose children have been diagnosed with autism, from language barriers to different cultural understandings, and misunderstandings, of autism. Families move from town to town and state to state (like this Florida family, who is moving to New York) in the hope that services will be better funded and simply better, and more accessible. And as noted yesterday in a post on homelessness and disability, programs and initiatives exist, but are those in need able to access them?

David Cameron's 6-year-old son Ivan had the neurological disorder Ohtahara syndrome and, very sadly, passed away in February, as noted in the July 16th Guardian.

He says he and his wife Samantha were not only "deeply shocked, worried and upset" when told of Ivan's condition, but also "incredibly confused". He adds: "It feels like you're on the beginning of a journey you never planned to take, without a map or a clue which direction to go in."

He also repeats a pledge to halt the closure of special schools and make it easier for parents to get the education they need. "So many parents get stuck on a merry-go-round of assessments, appeals and tribunals to get a statement of special needs and the extra help their child needs.

"There is a structural reason for that. The people that decide who gets specialist education – local education authorities – are the ones who pay for it. We're seriously looking at how we can resolve that conflict of interest, so parents don't have to enter such a huge battle for special education."

While things aren't set up in quite the same way in the US, bureacratic hoops seem inevitable. It's not that you just get your child evaluated and diagnosed and figure out what to do, but then you have to wait and, too, to talk to all sorts of people who aren't in charge and have been answering calls all day from people in your situation and while I'm not saying they don't care, you and your child are just another case to them.

And this is what your child really is, as noted in the Guardian:

Cameron once said his family often talked about whether it would have been better to let Ivan die. But friends say the Camerons are in no doubt that they were blessed with a boy who, despite his profound disability, was intelligent and happy.

"Ivan had a wonderful gentle aura with extraordinary eyes," one friend said.

And without getting too over-sentimentalizing, I have to say that my son has such, too and that's why one is always willing to go through bureaucratic pain---and it's also why we need to end it.