David Cameron’s right to flag up provision for families with disabled children.
I don’t often agree with the Conservatives – but this time I did – I’m writing this in the hope that it will stimulate a little thought and perhaps encourage Labour to make it plain that they are every bit as committed to these issues as David Cameron.
I felt that David Cameron’s article outlining his position with regard to provision for children with disabilities for the Independent on Thursday was a very important one.
Of course I would do – I’ve spent my whole career working in special schools – but I feel that the article has far wider importance – and signals an attempt to place the politics of disability centre stage, as we approach a general election.
If so then he has made a very good start. He rings most of the bells which families of disabled children, and those working with those children want to hear.
He also has a personal interest through his own personal experience as parent of his child Ivan who sadly died recently. The authenticity with which he relates that experience will certainly ring true with many parents and carers. I applaud his article – and hope that it kicks off a wider debate about the issues which he raises.
What I’d like to do is to look briefly at each of the 5 areas which he raises, and state how and why I’d like to go further :
Lesson 1 : The importance of early intervention and help : The next Conservative government is going to increase radically the number of health visitors
It’s hard to disagree with this – but I’d go further – we also need therapeutic input – Physios, OT’s, Psychologists and Speech & Language therapists as well.
David quite rightly tells us of the trauma which parents suffer on finding out that their children are disabled. Much of the help provided, will need to be as much for parents as for their children.
There’s no mention of who will pay for this radical increase in health visitor numbers – but I for one will not be picking holes in his suggestion.
Lesson 2 : Life for parents of disabled children is complicated enough : a crack team of medical experts – doctor, nurse, physio – [should] act as a one-stop-shop to assess families and get them the help they need.
Well he’s absolutely right about the complications – the politics of statements, about who does what, which number to ring for what service, who pays for which piece of equipment. It’s ridiculous – parents should be able to access one point of contact to deal with all of their issues. My own feeling (and I freely admit to my bias) is that this should be via the schools.
I do like the idea of a “crack team” – and I certainly endorse the “one-stop shop”. I’d caution against seeing disability as a primarily medical issue though. Some disabilities can be of course, but many are educational, psychological, and sociological in nature and the professional input most needed is often not a doctor or nurse at all. In fact a side effect of viewing disabilities as a medical issue, is that it can encourage the view that the disabled person is “ill” – and the corollary that they can be “cured” – which almost by definition is unlikely to be the case.
I’d suggest actually that in many cases these “crack teams” already exist, which is not to say they can’t be improved. One suggestion I would certainly like to see is the re-introduction of specifically trained teachers in the education of children with special educational needs.
I wonder how many people reading this think that teachers in Special Schools for example, had specialist training in order to teach there ? Well some do of course (me for one) – but the last courses leading to qualified teacher status, and specialising in “Special Needs Education” closed their doors in 1989. Most teachers in special schools are mainstream trained teachers with no prior specialist training. I think it’s time we did something about that.
Lesson 3 : we’ve got to make it easier for parents to get the right education for children with disabilities we’re going to stop the closure of special schools and give parents more information and greater choice
If I could change one thing in the world of special education it would be the way in which disputes are settled with respect to special educational needs provision. I could write a book about it – and I’ll blog another time about the specific frustrations of securing out of placements in the specialist independent sector – but briefly here’s the problem :
The local authority has the responsibility to meet the needs of a child with a statement of special educational needs. The statement is a relatively complex legal document (especially if you’ve never seen one before – which most parents haven’t) – which is drawn up by the local authority. It has to be agreed by the parents, and reviewed annually, and any dispute can ultimately be decided by a Special Needs Tribunal under the auspices of SENDIST.
Problems are usually sorted before that – but sometimes not. It can be a tough situation though.
I wouldn’t wish an educational tribunal on my worst enemy. They are heavy going even for seasoned professionals. For parents with no experience of taking on the great and the good, and worried about their children’s future they can be daunting in the extreme.
Like David Cameron, I want this situation to be improved and I suggest the following :
- SENDIST tribunals to be replaced with a non-adversarial arbitration and conciliation services, which provides a free advisory service to parents – and if necessary to local authorities.
- The removal from local authorities of the financial burden of funding non-maintained and independent special school places. This funding to be handled by regional bodies, drawing an averaged amount from LA budgets, allowing LA’s to reach decisions on suitability of placements on a purely needs driven basis.
The thinking behind the closure of special schools is a complex and philosophical one. I’m certainly encouraged that David Cameron appears to be in favour of a special school provision – but do remember : Most children with special educational needs, can and should be educated in main stream schools.
As of course they are. Some would do better in special schools though – but the nuances of where we draw the lines, how we decide who is placed where, though tiny in the national picture, are huge life changing decisions for some young people and their families. It is an area that certainly would benefit from further public debate.
I’d like to see :-
- A national review of LA policies on special school versus mainstream special needs provision, basing outcomes not on ideology, but as far as practicable on the choices of young people and their families, and the needs of individuals not populations.
Lesson 4 : Like all other carers, parents need a break.
Respite care is such a massive need for families with disabled children. It must become a major priority. Like David I feel that the voluntary sector will undoubtedly be key agents in addressing this need – but let’s not undervalue it – and if funds are needed they should be allocated.
Lesson 5 : “Here is the total budget for you or your child, you choose how it’s broken down.”
This is of course already happening for some –but not for others. I love this approach because it’s radical and progressive – in some respects extremely right wing, in others extremely left wing – it doesn’t matter. It’s an idea that is about enabling the most powerless, vulnerable, and disenfranchised people in society to make directly the decisions that will improve their lives and give them control over what happens to them. Get on the case Labour – and tell the world what we’re doing towards this !
If I was to offer a few words of caution, they would be to look at who really makes the decisions in the end – is it the parents, the person with the disabilities – or is it someone else ? Parent’s don’t always choose the things for their children that their children would choose for themselves. If you’re an able bodied teenager you tend to find that out and make yourself heard and make your choices accordingly. If you’re a severely disabled teenager you might not be able to make your feelings heard quite so easily.
In a similar way parents of disabled children are not necessarily skilled in managing the responsibilities of spending delegated budgets to meet their children’s needs – and may need help.
I hope I’ve given a brief hint of how I feel about these issues – and that it may stimulate a little debate elsewhere – hopefully within the Labour party – about these important issues. I’ve tried not get bogged down in detail – but if this article is a little on the long side it’s because I could literally write a book on each of these 5 “lessons” – they really do mean an awful lot, to an awful lot of people – who are still a tiny minority within our society.
I’d like to finish by drawing attention to a sixth area that David Cameron hasn’t covered : Our provision for children with disabilities is strong, but could be stronger. Yes – but many of them will need our services for their entire lives though, and there is a reality that provision beyond school age is no where near as intense in terms of either quality of frequency as that which they receive as children. I think this is a problem.
I’ll leave that one for people to think about.
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