Tuesday 15 May 2012

On empty budgets, and "looking disabled"

(I was lucky enough to have the opportunity to discuss the points below regarding the government's proposed changes to the special educational needs system yesterday: on BBC London Radio (I'm about an hour and five minutes in on that link), as well as on BBC TV News and Channel 4.)

So this morning we find that the government wants to make changes to the way we decide which children have special educational needs. And it wants to shift responsibility for providing the additional support these children require.

In a nutshell, the government believes that fewer children should be labelled as having special educational needs -- on the grounds that good teaching and pastoral care can provide what is required for many. The government also believes that parents whose children are actually classified as having special educational needs should be given a personal budget to go and get the support their child needs.

Frankly, anything that makes the system simpler is to be welcomed -- at present it's Kafkaesque.

But the proposed changes make me worry.

They make me worry that the plan to reduce the number of children categorised with special needs will make it even harder for those who do genuinely need help, to get that diagnosis or classification. We waited five years for a diagnosis of autism for my daughter, and now two years after that diagnosis we are still waiting to see whether, on our second attempt, we have successfully gained a statement of educational needs. My ten-year--old daughter is bright and articulate and funny. She also cannot tell the time, use money, or understand social cues. We are often told that our problem is that she doesn't "look disabled."

The proposed changes also make me worry that children who are not classified as having special needs under the new system will not get the support that the government claims they will get by way of better teaching and pastoral care. The provision of good teaching and pastoral care is entirely random in schools as it is, and in many places is getting worse as budget cuts are forced through. Who is going to pay for the good teaching and pastoral care that the government is now promising to children who are pushed out of the category of having special educational needs?

They also make me worry that being handed financial control of their child's SEN help will put an additional burden on parents who have got their hands full dealing with often distressed and difficult children, as well as trying to hold down jobs and meet the needs of the rest of their family, in an environment where disability living allowance is already being cut and employers' patience is worn thin by the demands of business in a difficult financial environment. I worry that in particular this will push even more mothers out of work -- if they haven't already had to do so -- in order to stay at home and organise care and balance the books.

And they make me worry that, when it comes down to it, the basic problem will remain the same. What's the point of handing over a budget to parents when there isn't enough money in it to actually pay for anything and when local resources are so stretched that even if you do have the money you'll have to wait eons until the one or two beleaguered support workers available can make time for your child among their towering caseloads?  So much of the difficulty we've had has come down to money. There isn't enough of it. There aren't enough people -- special advisors, support workers, teachers -- or training programmes -- because the resources have already been so badly cut. And these changes don't speak to any of that.

I talked a bit about this on BBC London Radio this morning. I was due to talk a bit about it on Sky News last night too but at the last minute they rang to say they wanted someone else instead, someone who "looks disabled."

Here we go again.


  1. I agree I find it terrifying and I know that it's going to make life much, much harder. I have the dubious advantage of having an obviously disabled child, so you would think that getting funding is easy. It really, really isn't as he needs a one to one to help him during his school day. If you saw the amount of paperwork I had to produce to prove the need for this you would be amazed, something that is so obvious to anyone has to have a rainforest sacrificed so it can all be committed to paper on a yearly basis *sigh*. If I get given a set amount of money, and something changes, which is does for kids like my son, and suddenly his needs increase, what then? Do I have to somehow find the money so he can still access school while I wait for the bureaucracy to catch up with us? I hope not considering that the same bureaucracy still hasn't let us start work adapting our house three years after we started the process stating that it was urgent.

    There are so many hidden illnesses that can see a child walking around happily one minute and barely able to cope the next. I have yet to come across a single person given any responsibility for assigning money to my son who has understood (or was even bothered to try to understand) my son's needs. Wheelchair service is a classic example. After 2 years, we still don't have a chair from them (they managed to *lose* one chair for a year), they then told me that what they have isn't suitable and all they can do is give me a £100 voucher, but then I can't contact them again for 3 years. Considering that a decent chair costs well over £1000 and you can see how ridiculous it is. Needless to say, as my 5 year old needs to actually be able to move around his environment, I bought one with my savings.

    They certainly need to address the issues, but they need to do it using an advisory group made up of parent representatives, just to make sure they don't completely fuck it up as I don't have the time or the energy for yet another fight or ridiculous hoop to jump through just to get my son the basics that everyone else takes for granted.

    Sorry this has turned into a bit of a rant!

  2. No apology needed! Thank you for your comments and I'm so sorry you've also had such a tough time of it. Appalling to hear that your local authority is unable to provide something as vital as a wheelchair. I agree entirely with your point about a parental advisory group and am investigating just that. Good luck with your fight. x

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