Children with special needs deserve better than a rush to

reform
The government's frantic approach to special education threatens vital provision for
thousands of children like mine

BY: John Harris

The Guardian, Sunday 20 May 2012 21.59 BST

Plans at Michael Gove's Department for Education could see up to 450,000 children
taken out of the catagory of special needs.
The government bounces from crisis to imbroglio and back again but at Michael
Gove's Department for Education, the revolution rolls on. A green paper on special
educational needs was published last year and after the inclusion of the plans in
the Queen's speech, last week saw an explosion of news coverage. As many as
450,000 children, said ministers, could soon be taken out of the category of special
needs altogether. The resulting stories paid no mind to the idea that we are talking
about a sliding scale, and the infinite complexities of child development as far too
many people saw it, you either have special needs or you don't, and too many
people are playing the system. "Schools on a scam and an excuse for lazy teaching"
was one of the more sensitive headlines on Mail Online.
None of which is to suggest that the way things are done isn't in need of change, or
that some in government don't have a keen understanding of the mess special
needs provision is in. Everybody seems to know someone who has been through the
special needs grinder (if you have experience yourself, please get in touch at the
email address below). It is a deeply malfunctioning system, in which the obligation
in law to make decisions solely based on a child's needs eternally bumps up against
limited council budgets, but no one is allowed to say so. As a result, good people
serve messed-up imperatives and, more importantly, thousands of families are
denied most of the help they need. As so often happens, the machine often can only
be satisfactorily played by the sharp-elbowed, so class is a constant subtext.
I speak from experience. One of my children is autistic. He was diagnosed just after
his third birthday. In our innocence, my partner and I had some vague sense that
the public sector would provide, not least because the most common theme in any
introductory text about autism is the need for early intervention. But no: it quickly
became clear that NHS speech therapy was effectively nonexistent, no one
mentioned my son's obvious problems with motor skills, and too often we were
effectively told to go away, depend on threadbare arrangements and wait till he was
eligible for school. Looking back, I'm not sure how we did it, but we read up on a
research-proven technique called applied behaviour analysis (ABA), found an
independent consultant, and set up a three-days-a-week home programme. My
son's use of language hugely improved. He learned many of the other crucial skills
that were either lacking, or absent: the ability to point, and imitate; the habit of
commenting on his surroundings; how to divert his energy away from tantrums into
productive activity.
The next step was to approach our local authority with a view to what's called a
statutory assessment, so my son's needs could be officially analysed, and we could
make the case for public funding of the programme, enshrined in a legally
enforceable statement of special educational needs. We knew what was required: in

cases like ours, to stand any chance of meaningful success, you need a truckload of
informational wherewithal, the will to fight, and the money to hire a good lawyer
which, at a stroke, scythes out millions of parents, who are left with only piecemeal
help, and hotchpotch provision.
To start with, despite my son's diagnosis, the local authority did what a lot of local
authorities do, and refused to assess him, on the most specious of grounds. We then
appealed via the official tribunal system, and endured grim months of compiling
reports and writing a lengthy case statement. And then, one morning, mere weeks
before our hearing, my mobile phone rang, and I spoke to someone from the local
authority I had never dealt with before. Rather than obstinacy, we were suddenly
met with a guarded kind of openness. We were granted assessment, and then a
statement and after long months of grinding negotiation, my son's programme
was introduced into his brilliantly co-operative state primary school just as he
started there in September 2011. The arrangements seem to be working well: last
week, while getting changed for school, he turned round to me, beamed, and told
me for the first time about all the classmates he would be seeing that day.
Inside two years, the government's new system will be in place, which will change
arrangements that lie at the heart of lives like ours. Statements, which can hold
councils to detailed commitments to particular children, are to be replaced by single
plans covering education, health and social care between birth and the age of 25
but there are clear signs that they will not be as dependable as what they will
replace. There are plans to introduce personal budgets, but no real sense of what
benefits they will bring to families who already juggle huge responsibilities, or
whatgenuine innovations if any they will involve(therapies such as ABA appear
to be off-limits). Late last week I spent two days on the phone, talking to people
involved in special needs charities and pressure groups. It's fair to say that no one
had any real clue about what might be coming.
The government has announced 20 "pathfinder" projects, to pilot some of their
plans. Freedom of information requests made by one education activist in late
March eventually highlighted the fact that,as against the official claim that the
authorities involved "are testing" their plans, at least a third had not yet decided
which families should be included; one council insider I spoke to last week said the
government had issues of "credibility" in "moving so fast"; even such apparently upto-speed authorities as Gateshead and East Sussex will not have their schemes in
place until September. But a draft bill will be published in the summer, the
government says its interim evaluation of the pilots is set to be published "in the
autumn", and the plans proper are meant to be in place "for 2014". There are
reportedly rumblings on Facebook from families who wonder why they're bothering
taking part, and an increasingly familiar coalition odour hangs over the whole
enterprise. Is all this a sign of ineptitude, or cynicism? Or both?
Meanwhile, massive fundamental issues remain, and it looks as if the government's
plans will barely touch them. Autism is my specialism, and I well know that our
health and education systems exist in a state of collective denial about the
necessity of concerted early intervention. A survey this year by the National Autistic
Society found that 34% of its respondents had had to wait three years or more for a
diagnosis after first raising concerns: precious time, often completely wasted.
Without powerful forces that will pro-actively hold public institutions to their
obligations something singularly lacking from what's now proposed legal argybargy is set to remain the most reliable means of getting children what they need,
and is often just as time-consuming. In any case, for thousands of people it's simply

not an option. At a huge cost, we later pick up a bill for a mountain of missed
opportunities, which is why even people mindful of the need to control public
spending should favour early intervention, and a means of making sure it happens.
The arguments are obvious: in the absence of essential life skills, too many autistic
life-paths unnecessarily end with round-the-clock institutional care, mental health
problems even prison.
What, we should also wonder, of those 450,000 cases now said to be in the
government's cross-hairs, and the fact that even if a "need" is nuanced and perhaps
temporary, it may still be very real? Reforming zeal and raging stories in the press
are no substitute for careful analysis and even more careful action. Looking at the
current proposals, and mounting concerns about them, I'm rather reminded of
cliched advice always thrown at parents with worries about a child: if you suspect
something isn't right, then it is no good assuming that everything will somehow turn
out OK you must act, and fast.