Saturday, July 07, 2007

Parents Fight Education Bureaucracy for Autistic Son's Education

When it comes to education of autistic children the story seems to be universal. Cost priorities determine education plans but are hidden behind the rhetoric of an education for all children with the "educators" stubbornly maintaining that they know best; they are the professionals. And of course the resistance by "educators" to use of Applied Behavior Analysis, ABA, is also almost universal. Canada or England, educators do not want to provide a real ABA based education to autistic children. Nor do they want to admit that costs, bureaucratic control and professional pride drive their resistance.

We couldn't get a proper education for our autistic son

By SARAH SPILLER - More by this author » Last updated at 22:12pm on 7th July 2007

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Channel 4 presenter Alex Thomson and his partner describe their battle with the bureaucracy that rules the teaching of children with special needs.

On a bright spring morning, we headed for luxurious offices in the shadow of St Paul's Cathedral.

For all its modern exterior, Procession House sits in an ancient part of London. Holborn is famous for its lawyers, for their interminable battles and, of course, for their fees.

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My beautiful boy: Sarah Spiller with Henry

So perhaps it was appropriate that this was the setting for our final, nerve-racking shot in a year-long fight to secure help for our much-loved but severely disabled son.

Ahead of us, walking briskly, we spotted 'the other side', an officer from our local education authority (LEA) in Essex.

We had been dealing with her for 14 bruising months. Now she was trundling a suitcase full of papers - the case against us at the Special Educational Needs and Disability Tribunal we were about to face.

We took refuge in a cafe to settle our nerves. In our struggle with the educational bureaucracy, we had, believe me, exhausted all other options.

In one sense, we were not alone. More than 3,000 families a year seek independent arbitration on behalf of their children.

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Sarah Spiller with partner Alex Thomson and the twins

One in five children is said to have special educational needs. For some, and our beautiful seven-year-old Henry is among them, the problems are serious enough to warrant a formal "statement of special educational needs". This is a contract spelling out the difficulties and promising appropriate help.

Or that, at least, is the theory. As my family was to discover, in practice the system is shot through with delays, obfuscation and, at times, outright confrontation. Far too many children never receive the teaching, the support or the equipment they need.

No wonder the LEAs that fund the system, and the Ministers in overall charge, face mounting complaints. The tribunals were set up in response to parents' growing frustration and were supposed to dispense professional, fair-minded justice at almost no financial cost.

The reality, though, has proved very different. When we walked into the tribunal, we did so accompanied by a barrister and a growing sense of panic. The battle had already cost us £11,000.

Why on earth was this so hard? After all, we are both used to taking on the authorities - we have made it a career. I am a freelance journalist, and Alex Thomson, my partner and Henry's dad, presents the news on Channel 4.

We hadn't, though, reckoned on fighting a system that can pit parents against the very people who are supposed to have children's interests at heart.

Going up to London on the train, clutching our photos of Henry, we had talked about the many twists and turns in his short life. Henry and his twin George were born three months early, both weighing less than three pounds. As they grew into toddlers we prayed they would develop normally.

And then Henry started having strange shudders, as if his whole body shivered down one side. His limbs would jerk up and his eyes rolled. Shortly before his third birthday, a neurologist diagnosed an aggressive childhood epilepsy.

Henry, we were told, might have severe learning difficulties and would need a great deal of help at school.

The differences between the twins became ever more apparent. While George was getting into Lego, Henry flitted around the house at top speed, emitting high-pitched shrieks. He rarely stopped and, when he did, he would conk out exhausted.

We put both boys into the local village primary's pre-school section and, in line with professional advice, waited to see how things panned out.

While George thrived, bringing home his cheerful artwork, Henry couldn't get his hands to do very much at all. They trembled, sometimes continuously. He found it very hard to concentrate and his balance was precarious.

Often, when we picked him up, all he wanted was a big hug, reassurance and then a long sleep. One night, Alex spoke to Henry's teacher. She told us: "If he stays here, he'll sink."

If it was clear that Henry had serious problems, the solution was far from obvious. It seemed the private sector might be the answer.

We come from families of state-school teachers, so it was a wrench when we moved both boys to a normal independent school, with small class sizes and expertise in special needs. The staff backed us immediately when we said we wanted Henry assessed for a "statement".

However, this was a long, drawn-out process. Henry was assessed by the LEA's educational psychologist and other health professionals. A full five months on, the LEA drew up a draft statement.

It accepted he had severe problems and offered to pay for 15 hours of one-to-one support from a teaching assistant at Henry's school.

We showed the LEA a report from a psychologist at Great Ormond Street Hospital, who said Henry should get the highest levels of support. It upped the hours to 25 but Henry still found school life very hard.

Then we started to notice other things, too - odd mannerisms including a frenzied flapping of hands. He seemed in a world of his own, completely unaware of other children and obsessed with Thomas The Tank Engine and then with all aspects of the Jurassic age.

There was still the nerve-jangling screeching and squeaking. Sometimes, in a high-pitched voice, there was exquisite singing. He would also recite large chunks of his favourite video, Walking With Dinosaurs, adopting an orotund BBC voice to do so.

We knew by then that something was badly wrong. So when Henry was diagnosed as being on the 'autistic spectrum' we were not surprised, even though the news was shattering. I drove home from hospital in tears.

So now we had autism, one of the least understood conditions, to contend with. And once again we had to compile a mountain of research about the best way forward. We found that one of the most successful therapies for autistic children is a teaching method called Applied Behaviour Analysis, or ABA.

We found an ABA adviser, paid for school staff to be trained in ABA and hired tutors for Henry at home. He began to concentrate for longer periods and became calmer, slowly getting more of a grasp on real life.

All this cost, of course. We did the sums and realised that the burden of school fees and ABA therapy was not one we could carry on our own. So we approached Essex LEA about Henry's autism diagnosis in the hope it would reassess his needs.

But not only did the authority refuse to re-examine Henry, we were told that our paediatrician had decided he did not have autism after all. She had spoken to an LEA psychologist and she had changed her mind.

It was a hard one to fathom. There are no miracle cures for autism. Moreover, we now had another assessment from a different NHS consultant saying that not only was Henry definitely on the autistic spectrum but he also had a hyperactivity disorder.

We slowly started to realise the scale of what we were dealing with. It was painful enough coming to terms with our son's disabilities but, if we were to give him the help he needed, it would mean taking on all these people.

Reluctantly, and with our own costs rising inexorably, we hired a solicitor. We appealed against the LEA decision and it agreed to reassess Henry.

This time, we left nothing to chance. We paid for an independent educational psychologist, speech therapist, occupational therapist and psychiatrist to assess Henry. Each report cost £500. They revealed that, at the age of six, Henry's understanding of language was that of a child of two-and-a-half.

As well as autism and a hyperactive disorder, he had dyspraxia - severe difficulties with his motor skills and co-ordination. He needed the autism programme, intensive help with his language and weekly occupational therapy.

But the greater Henry's requirements, the more Essex would have to pay. Needless to say, when the LEA sent us a new statement on Henry last September, its recommendations were poles apart from those of our independent experts.

Terrified by our increasingly precarious financial position, we tried to negotiate with the LEA. But it would not budge - and it emerged it had hired a barrister to fight us. "This," said Alex, "is Kafkaesque."

Solicitors' letters went back and forth. Our house filled with mounds of paperwork. It was a struggle to keep going. Then, one night, Henry appeared, trailing down the stairs clutching his plastic dinosaur.

He drew himself up and began reciting his latest video of choice, ITV's Prehistoric Park. "Finding a triceratops is one thing," he intoned gravely. "Bringing him home is quite another."

We flung our arms around him. Without knowing, he'd told us what this was all about. We had to bring our lovely little triceratops "home". We had to ensure his autism programme continued. We couldn't give up.

As I had feared, the tribunal in March was like a day in court. On one side sat our witnesses and barrister; on the other, the LEA's.

And then, for the first time in more than a year, there was a chink of light. After putting us through all this, the LEA indicated it might be willing to compromise. And, yes, money was at the root of it. For a start, it had assumed it would have to pay £16,000 a year to transport Henry the nine miles to his school.

Had we ever managed a reasonable conversation, we could have told officials I was happy to drive both boys. I had to drive George anyway.

Then it emerged that the package we proposed could be cheaper than the support Henry might need in the local village primary. So - and this did seem to be a miracle - the LEA was prepared to settle.

It agreed to fund Henry's school autism programme, pay for weekly occupational therapy and pay his school fees.

We count ourselves lucky. I know of families who have remortgaged their homes and been to numerous tribunals to secure the help their children need. Appeals to tribunals have risen 61 per cent since Labour came to power.

It is a great irony that, had Essex recognised the true extent of Henry's needs at the outset, the authority could have saved itself - and us - thousands of pounds in administrative and legal fees.

Like many parents struggling under intolerable pressure to get the right education for their disabled children, we can't help thinking there must be a better way.

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