Lisa Markwell: It's her needs that make my daughter special

A label might sound nebulous - but for parents it can be the key to unlocking help
  • @lisamarkwell

I'm sorry. I'm sorry my daughter kicked your daughter and that she ran out of the classroom and climbed up the bookcase. I'm sorry you felt you couldn't invite my daughter to your son's birthday party and that the school felt unable to include my daughter on the adventure week away. I'm sorry that my gorgeous, mercurial, unpredictable, music-loving and, yes, difficult child does not fit the standard-issue template of a child. But I'm not sorry that she has a Statement of Special Needs. I'm not sorry that she gets funding for extra help at school.

It's not her fault. Would you rather the funds that have now enabled her to manage all of the above weren't there? That a class was halted to coax her down off the table? Thought not.

You understand. Of course you – readers of The Independent – understand. But not everyone does. And those people greeted with satisfaction the news that the Special Educational Needs (SEN) system is to be overhauled. At last an end to the culture of "naughty" children being given an excuse for their bad behaviour; at last an end to failing schools being given our hard-earned money to shore up bad teachers with huge numbers of learning support assistants.

Of course there are times in which both of those situations are true – when was a system ever beyond exploitation? In the vast majority of cases the school has to manage with one lump of money however many – or few – children are classified as having SEN. So it's of little help for a school to thus classify the low-performing, troubled and disruptive children. I accept that the figure given yesterday by the Government – that of 18 per cent of all children currently being deemed to have SEN – is shockingly high. But there's a catalogue of underlying reasons why these children can't or won't cope with school. That's another, vast, story.

Of this 18 per cent, just 3 per cent have what is termed "complex needs". They are the ones who receive a "statement" and are eligible for extra funding. Some of them are physically disabled, have autism or a distinct learning difficulty. But some of them are like my girl, who has problems that are not easily defined.

Without compromising her privacy, some background. Ruinous deprivation and a catastrophic array of bad decisions led to her being placed in care – she then came to live with me and is now my daughter. That she's a walking, talking, funny, sharp, radiant personality is astonishing. But the nearest definition of her struggles with the confinement of a classroom is BESD. Behavioural, emotional and social difficulties. It is a nebulous term, I concede. But a label helps.

Yes it does, as any parent who has a child with special needs will tell you. Rather than encouraging teasing or bullying of the child (that'll happen anyway), it is the key to unlocking help.

And now it's changing. Around the country, users of the SEN system are bracing themselves, wondering if they'll have to reopen the stack of box files that contain the paperwork with which they negotiated their child's provision.

There are two issues here: Sarah Teather, the Minister for Children and Families, announced that many – as many as 450,000 – children are wrongly labelled as having SEN when what they really have are social problems. These are the children that get money from the "pot" that local authorities give every school to deal with those requiring "School Action" and "School Action Plus" (more bodies in the classroom, in layman's terms). Those are to be scrapped. What happens to those children with a legitimate, but mild, difficulty remains to be seen.

The second issue is that tricky, pricey 3 per cent. The "statement" label itself is disappearing, to be replaced by an integrated Health, Education and Care Plan. And the big news – for owners of those bulky box files – is that each parent will be given a "personal budget" to source and organise a tailored arrangement of help for their child.

On the face of it, this is a good thing. Nobody knows a child's need like their parent. But (forgive me if this is getting into tiny fractions here; the figures involved are not tiny) even the most committed and articulate of parents would struggle with the task. I know of the long days spent finding educational psychologists and long nights spent trying to work out how to afford them. Endless letters fired off and chasing phone calls. And that's before parents are pitted against each other to buy the services of the better therapists. Then there's the ever-diminishing number of special schools that don't offer quite what you need, but you'll have to put your daughter or son into because it's better than nothing. Meanwhile, what of the parents who either can't or won't engage with their child's needs? Who will act for their children?

Apparently the Government has been advised to provide advocates for those families to guide them. Money, money, money – is it really available? And how long will it last?

The bottom line: I've said this before but when I had cancer, the decision whether to have chemotherapy or not was given to me by my oncologist. All to do with empowering the patient. I felt very strongly then that I'd much rather an expert made the decision. It's the same with education. I want to be involved but I want to be guided by an expert. My daughter's future depends upon it.;