The boy in the corner: Why do children with special needs still get such a raw educational deal?

The system set up to help children with special educational needs can be as frustrating to parents as mainstream classes seem to their kids. With education a key pillar of the coming election, Bill Tuckey - who has himself battled the authorities on behalf of his son - corners Ed Balls and Michael Gove to ask: why is it so difficult to give our children the education they deserve?

It was only after her 12-year-old son had called her a bitch and thrown his rucksack so hard against the car windscreen that she thought it would break, that Catherine Hastings decided something radical needed to be done about his schooling. It was the second time she'd tried to drop off Max that day – on the first occasion he'd sneaked back home as soon as she'd left him at the school gates. "He was so distressed at having to go," she says. "And when I finally got him out of the car, I could see he was just hanging around waiting till I drove off. I wound down the window and said, 'What are you doing?' He looked at me and his shoulders drooped. He said, 'I'm not going in.' I told him. 'You better get in the car then.' He sobbed on the way back, and actually said to me, 'I can't cope' – it was awful, can you imagine your 12-year-old son in that state? It was at that point that I said to him, 'I've found this special school, it's got motorbikes,' which he liked at the time."

Before that meltdown in his mum's car, Max's journey through six different schools in seven years of mainstream education could be described only as Dickensian, peppered as it was with tales of bullying, neglect, exclusion and misunderstanding of his needs. For Max is on the autistic spectrum – "very, very clever," as his mum points out, "on the genius scale clever" – but nonetheless in need of much support.

His story resumes later – just one out of many such horror stories that, as a parent of a child with special educational needs (SEN), one hears about in my particular liberal north London village.

There's Margaret and Alastair, who are fighting their second, eye-wateringly expensive legal duel in two years to stop the local education authority removing their dyslexic and visually impaired 11-year-old son from his specialist school, in order to place him somewhere cheaper; the school which finally cured him of the suicidal thoughts that five long, alienated years at his local primary had allowed to creep in.

There's Eleanor, whose son has been excluded several times from the shiny new flagship academy he studies at, one of several autistic pupils whose behavioural tics have fallen foul of its much-trumpeted zero-tolerance behavioural policies.

Paul and Helen, meanwhile, have been left bewildered and angry by their newly adopted son's string of primary-school exclusions. He's only six years old, and with all the upheavals in his young life, it's hardly surprising that he's occasionally bewildered and angry himself.

I could go on – list them by the dozen, all within a mile or two of where I live, all struggling with unsympathetic teachers or incompetent professionals, penny-pinching local authorities or draining legal wrangles – a toxic morass in the middle of which their child sits, miserable, let down, or excluded.

We meet up to share stories from the front line, unpicking the reality of Britain's long-standing policy of mainstream inclusion. This is the SEN underground – we're everywhere, if you know where to look.

One in five British schoolchildren are diagnosed as having special educational needs – which could mean anything from a minor hearing impairment to a profound developmental delay. The Lamb Inquiry, published in December, was a comprehensive, Government-funded survey looking into how to improve parental confidence in their schooling. Its chairman, Brian Lamb, reported that he had met some of the "angriest" parents in the country among the 1,000 he spoke to during his nationwide research.

He advised Schools Secretary Ed Balls that, "Parents need to be listened to more and the system needs to be more ambitious for their children... We need a radical overhaul."

Lamb set out 51 recommendations, all of which Balls' department agreed with and is now busy turning into a flurry of initiatives to try to plug the holes in the inclusion ship, which almost everyone agrees is a very leaky ship indeed.

There will be more training for teachers and closer scrutiny of schools' and local education authorities' (LEAs) performances, including the number of exclusions – shockingly, SEN children are, at present, eight times more likely to be excluded than their peers. Parents will have more input in schools, and more support, including a new national SEN helpline.

But come 6 May, should a Tory government be elected, all that caulking and replanking could prove a waste of time. David Cameron, who, like the present prime minister has his own parental experiences of special needs, is planning to scupper the whole craft. To end what his draft manifesto calls "the ideologically driven closure of special schools" and "the bias towards the inclusion of children with special needs in mainstream schools".

With an election looming in which education is such a hotly contested issue, writing this article presented me with an irresistible opportunity: to collar voter-hungry politicians such as Ed Balls and Shadow Schools Secretary Michael Gove, and thrash out with them the issues which I and my fellow SEN parents get so worked up about around our kitchen tables.

First, let me tell you about my experiences with my own son, Alex. He is 10 years old and has been at a mainstream primary school since the age of six. It wasn't an easy choice to send him there. The experts were divided as to whether it was a suitable setting for a child on the autistic spectrum, a child who can be overwhelmed by too much noise or visual stimulation.

We went to see some special schools before opting for it. In one, there were several children in crash helmets who'd learnt from each other the habit of repeatedly banging their heads against the wall. In another, the headteacher casually referred to the "strap chair" used to restrain the more unruly pupils. A third offered a clapped-out building and staff who looked as if they'd been there since dinosaurs roamed – a common picture, given that there are nearly twice as many teachers over 50 in special schools as in mainstream ones.

None of these places matched our ambitions for Alex, who, despite his delayed speech and language and a tendency to withdraw into his own world, is also a clever, friendly child; a computer expert who has been reading PC Professional magazine since the age of four.

So, partly because there were no other attractive options, we made our decision to go local. We would make it work. Bus in all the expertise that he needed, build a team around him. It would be a struggle, but at least he would be there with his siblings, be a part of the community – and that was surely the way it should be.

We had to fight hard to get that team in place. When we first asked the local authority for a statement of special educational needs (the document that sets out the provision your child is entitled to), the locum who assessed Alex thought he'd be unlikely to get any help – she'd seen a child only the day before, she told us, whose arms and legs were "just three inches long", and she hadn't agreed to give him a thing.

In his inquiry, Brian Lamb speaks of meeting LEA-employed educational psychologists who "described a settled professional culture where it is expected that they... will not recommend provision that they know the local authority cannot immediately provide".

It was only by threatening to go to SEN Tribunal (the judicial body where parents can complain against LEA decisions), that we eventually managed to squeeze out of them a full-time learning support assistant (LSA), and weekly visits from a speech and language therapist and specialist teacher. We'd argued for more, but all in all, it was a pretty good package.

We were lucky not to have to carry out our threat. There is a flourishing offshoot of the legal profession whose sole raison d'être is to support parents at such tribunals, where LEAs will often come armed with barristers and an intimidating array of expert witnesses, and where parents will need to lay out well in excess of £10,000 to amass a convincing counter-argument. One mother described the experience to me as being "like a job preparing for it, and so stressful. There were six people from the LEA up against us. Walking in there, I couldn't stop crying."

On his first day at school, Alex hid under the climbing-frame in the playground and refused to come out for half the morning. He's fearful of any kind of change. But he had a brilliant LSA, an enthusiastic class teacher and a supportive head, and with each passing day, he settled further into the life of the school. Staff were sent off on extra training days and, as parents, we were allowed to participate in his planning meetings. Within a year, he was being hailed by all as the very model of successful inclusion, benefiting from just the kind of provision that the Lamb Inquiry wants to make commonplace.

But it has not been all sunshine; as the years have gone by, the shortcomings of this model have become more obvious. Every September, Alex has a new class teacher who is at square one in terms of understanding Alex's needs – some make the effort to get to square two more enthusiastically than others. And in a class of 30, regardless of the class teacher's expertise, there is very little time to bring it to bear on any one child. As a result, Alex's LSAs bear a heavy weight of responsibility – again, some more enthusiastically and competently than others.

Then there are Alex's classmates. As they have grown older, they have grown more aware of his difference; his circle of schoolfriends has dwindled to virtually nil.

I don't think my wife or I are naturally pushy parents, but we have learnt to be. We have to constantly encourage, cajole and organise, to make Alex's support package work. To ensure all the professionals keep their eye on the ball. When you've hung out in as many NHS and LEA waiting-rooms as we've done, you get to see the results of a more laissez-faire approach – children with complex cognitive difficulties, some of whom haven't even been diagnosed, let alone supported. Parents who perhaps do not have the education to get the help they need: isolated, driven to divorce – utterly failed by the system.

Even with all the help we have secured for Alex, he has had some very dark moments indeed in his school career, moments when he has declared he hates being there, hates himself, and hates his life. As with any mainstream model, the expertise to address his issues is always an add-on, a peripheral; with the best will in the world, Alex's undeniably excellent team are often obliged to use their limited time to manage Alex's problems, rather than solve them.

As you have probably gathered by now, for parents like me, the issue of SEN schooling can become something of an obsession. At the moment, the focus is where Alex will go to secondary. The local choices are limited. There is the giant comprehensive in which he would have to shunt distressingly from class to class throughout the day, and where there is no great expertise on site. There is an academy with a massively oversubscribed autism unit. There is a special school that attempts to meet "a rainbow" of wildly divergent of needs, where a large minority of students have complex behavioural and emotional difficulties, and GCSE results are very low. It is a pretty typical local picture, which may explain why the number of SEN pupils in private schools almost trebled over the past decade.

In a high-ceilinged room somewhere in the depths of Westminster's Portcullis House, Shadow Schools Secretary Michael Gove is trying to convince me that it is the Conservatives who can provide parents such as myself with the kind of real choice we're all desperate for. "We need to have a fundamental review of how we provide education for children with special educational needs," he says, a hint of Aberdonian burr in his voice. "My view is that inclusion has been used as a doctrine by people who are not primarily interested in the welfare of the child, they are interested in saving money under a cloak of benevolence; while inclusion probably works for some, parents should be able to choose an environment where their child's needs are understood, and where they can have an education tailored to their requirements."

Gove says that the Tories' first step on this road would be to wrest control of SEN assessment from local authorities. Instead, independent educational psychologists would assess each child and create a "Special Needs Profile" for them, based on a dozen or so clearly defined "Support Categories". Each of these categories would legally attract a sum of money, which would be paid to the child's school.

He also aims to cut miles of red tape out of the system in order to encourage more teachers and parents to set up special schools. "Ultimately, what we want to move to is a system of pupil funding where you assign to a child a particular sum and they can take that to whichever provider they want."

The obvious question is: how are they going to pay for all this? Better assessment will presumably mean more children needing funding. And a wonderful chocolate box of assorted special schools surely won't come cheap either. Even now, shelling out for the paltry five per cent of SEN children who are taught in special schools accounts for around 40 per cent of Britain's total SEN budget.

"We had a conference where a variety of heads of special-needs schools spoke," he says. "All of them believed that if we gave them the freedom to change the way they operate, and the money being spent on children in a mainstream setting, they could easily provide the same, if not more, and significantly better suited to children's pastoral needs.

"I wouldn't want anyone to vote Conservative on the basis that we would spend more on this area," he warns. "But we will not be looking at SEN funding as an area where savings can be made."

The Conservatives have been jumping up and down about the 9,000 or so special-school places lost since New Labour came to power, so it is odd to note that it was while they were in charge that the numbers slipped most dramatically, by nearly 30 per cent between 1979 and 1991. This followed 1978's Warnock Report, a radical document commissioned by Margaret Thatcher, which highlighted the way in which SEN children were marginalised, out of sight and out of mind. It set out recommendations to improve their schooling, drag them back from the howling wilderness and include them more fully in mainstream society. The report formed the basis of the 1981 Education Act, which created the whole SEN framework still in operation today.

But if the Tories first floated the inclusion ship, New Labour sailed it into the deep blue sea. New legal guidance to schools and LEAs introduced in 2001 insisted: "The starting point is always that children who have statements will receive mainstream education." Removing Barriers to Achievement: the Government Strategy for SEN (2004), rammed the message home: "The proportion of children educated in special schools should fall over time," it said, and there should be a "reduced reliance on statements", as schools were given more direct cash to support SEN pupils.

Sure enough, the number of statements issued nationally did begin to fall year on year. But at the same time, the number of tribunal appeals shot up – the majority by parents complaining about their local authority's refusal to statement their child. And, as the Lamb Inquiry found, those pots of SEN cash in school coffers are still all too often being surreptitiously spent elsewhere – on library books, school orchestras, whatever.

Watching all of this unfold, Baroness Mary Warnock shocked educationalists in 2005 when she came out in public to denounce the legacy of her own report. The ideal of inclusiveness, she wrote, "springs from hearts in the right place" but moving pupils out of special schools had turned out to be "disastrous".

Given all the above, it is hard not to wonder why anyone would view the original inclusion dream as anything more than woolly minded 1970s hippie nonsense. But that would be over-simplistic. Mainstream does not work for everybody, but the vast majority of schoolchildren with SEN do cope well, especially those with purely physical disabilities. And there are also plenty of parents who still have to fight for the right to send their child to a "normal" school – with academies a particular battleground, as pressure over results tempts them to discourage the less able.

God knows we wouldn't want to go back to the segregation of the past. In the second half of the 20th century, tens of thousands of children with learning difficulties were deemed "severely educationally subnormal" and not entitled to any schooling at all. Instead, they were placed in "Junior Training Centres", under the charge of the local health authority. It was only after the Education Act 1970 that 400 or so of these dumping grounds were rebranded as "special schools", though the staff who worked in them didn't require any teaching qualifications. Some are still in existence today

When you go further back into the history of special schooling, the picture gets even murkier. In the late 19th century, interpretations of Darwin's theories spawned the eugenics movement, whose supporters believed the human race could be improved by selective breeding. In 1910, the eugenicist campaigner Mary Dendy wrote that mentally handicapped ' children should be "detained for the whole of their lives" to "stem the great evil of feeble-mindedness in our country".

Her work led directly to the Mental Deficiency Act of 1913, which categorised the disabled as "idiots", "imbeciles", "feeble-minded" or "moral defectives" and gave rise to a programme of special-school building.

With that background, it is understandable why inclusionists' hackles rise when the Conservatives breezily announce that the benefits of inclusion are, "in our judgement, far outweighed by the grievous damage that this policy has caused, not just to children with SEN but to their peers in mainstream education, their teachers, and their parents".

Is there room for any compromise between the two camps? Brian Lamb thinks so. In the diplomatic style that helped him to survive a year-and-a-half of ear-bashing during the course of his inquiry – and speaking strictly with his chairman's hat off – he says that "it would need massive investment" to create a national network of bespoke special schools. "I think what you're looking at is having a system where you try to integrate the support more, because there is evidence that specialist support co-located in a mainstream setting works better for everyone; it's not just about the money."

Co-location then. Is that the answer for Alex? To join an autism unit attached to a mainstream school, into which he can retreat during break and lunchtimes, and where he can receive extra, specialist help. It is an increasingly popular model, with units for everything from hearing impairment to dyslexia. They are cheaper and more inclusive than special schools, but talking to parents whose children are in such settings, there seem to be mixed experiences: some say it gives their child the best of both worlds, others that "the rest of the school kids treat it like a zoo" – and that while the less able SEN pupils spend every spare moment huddled within the unit "excluded within an inclusive setting", higher-ability kids cannot figure out where they belong.

Over in west London, there is a different model of inclusion on offer, one that reflects the seemingly paradoxical idea that inclusion does not necessarily mean mainstream schooling at all. Maybe it is the photos on the wall of pupils on a recent activity holiday, or the bustling preparations for a break-time cake sale, but The Moat School in Fulham exudes a quiet sense of energy and ambition that I haven't seen in many special schools I've visited. This is borne out in the academic results at this private co-ed for children with specific learning difficulties, a school which describes itself as "mainstream in structure but specialist in nature". "Over 30 per cent of our students got five or more A-star to C [grade] GCSEs, including English and maths," says headteacher Abigail Gray. "The Lamb Inquiry says the average is about 11 per cent for kids with SEN, so we're doing three times better than that, even though 70 per cent of our pupils have statements."

Gray says this success is attributable to her staff. Almost all of her teachers are specialists qualified to post-graduate level, and the school's therapists are on site, whereas in state schools they are bussed in for specific work, and contact is "brief and intermittent".

With its tightly targeted range of pupils, this ambitious – and relatively cheap – school is presumably one that Michael Gove would like to see more of. But I am taken aback when, during an occasionally tetchy phone conversation, Ed Balls says that he, too, would like to see LEAs offering this kind of option. "The particular policy about provision and the offer to parents is a local decision," he says. "It is not something which we centrally mandate. My view is that we do not have a commitment to inclusion or a dogma which says inclusion is better – my starting point is, I would like to give the parents and children the confidence to do what's best for them. To choose and to combine, which requires LEAs and schools to be flexible in their provision."

But hold on just one minute there, Ed: surely your Government has made a very clear commitment to inclusion, and backed it up with legislation which forces LEAs to do likewise? I quote to him a cross-party select committee report from 2006, which found that "it is reasonable for those in SEN to assume that the Government holds a policy of inclusion from which it has given guidance to local authorities to reduce both the proportion of pupils in special schools and to reduce reliance on statements".

"I disagree with the select committee on that," he says. "That has never been an instruction from the centre. Every time I visit a local authority and I talk about building schools for the future, I say to them, 'How are you providing special-needs children with special schools?'"

It's tempting to see Balls' response as a classic New Labour switcheroo: pull the rug from under the opposition by stealing their best ideas. But there is evidence that New Labour did, in fact, soften its hardline inclusionist stance some time ago – it's just that it never got round to spelling it out in any statutory guidance. As one LEA officer admitted to me, it has left her SEN department floundering. "They're not giving us a clear direction," she says, "so now we've decided just to make it up ourselves."

I wonder what the reason is for this lack of direction. Is it that they don't want to admit that they got it wrong? Or are they worried about calls for more cash from LEAs wanting to build special schools? The fact that Balls commissioned, and has acted upon, the Lamb Inquiry suggests he does care about special educational needs. But that was overwhelmingly about improving mainstream provision – with a few minor tweaks to the statementing/tribunal merry-go-round. As a parent, I cannot understand why he let the opportunity pass to look at the bigger picture.

The charitable view would be that you can only do so much at a time. Or, as Keith Joseph is supposed to have said when he got into the Department of Education: "I spent 30 years trying to get my hands on the levers of power and now I've got there, I realise they're not connected to anything."

Whatever the reason, the fact is that, having talked to Gove, Balls and co, I'm left with the same feeling that I often have after speaking to my local authority about Alex's provision. The sense that nobody is really telling it like it is. That while there's a lot of lip service paid to listening to SEN parents, there is always an unspoken financial agenda at play that takes priority.

Meanwhile, the same old wasteful and uneven system creaks on. The conclusion to Catherine Hastings and her son Max's story is a case in point. When she took him to the special school "with motorbikes", he took one look around and told her, "I've got to go here." "It was just a complete relief," she says. "The idea that there was somewhere that he could manage to be himself. By the end of his time at mainstream he'd become phobic about even putting pen to paper, but the school he is at now has completely changed that. He's thriving. The massive difference is that instead of the one-size-fits-all approach, specialist schools have a very holistic approach. They ask, what are this child's needs? Then they set targets for them and decide what provision they need to meet that. They will only take that child if they feel they will fit in with the rest of the community.

"It took a year and cost me a fortune in legal fees to get the LEA to pay for it," she adds. "His school costs £75,000 a year. They only agreed after I told the case worker, 'I've worked out where Ed Balls lives, and I'm going to walk up to his front door and tell him exactly what's happening, and I don't care if I get arrested.' He looked at me as if I was a little bit crazy, but within a week we had the funding. But if they had appropriate provision within the LEA, we wouldn't have had to go through any of this in the first place."

Some might argue that the country can't afford to pay for children such as Max to have such an expensive education, but Hastings has a clear answer to that. "Max is very articulate and charming," she says. "He has massive problems too, but with the absolute ability, with the right input now, to become a completely functioning adult. He would have been living in a council flat on Disability Living Allowance for the rest of his life if he had stayed in mainstream."

As for Alex, our school search continues. I only hope that if and when we find it, we won't then have to start looking for the right lawyer to get a place there. There is something deeply wrong with a system in which that is such a realistic possibility.

Perhaps a more united parental voice in the whole special-needs debate might help change things. With that in mind, I am now working with others to set up a web-site, sensay.co.uk, as a national forum for SEN parents, a place where we can come together and try to figure out how to make ourselves heard. So that, instead of fighting our own individual battles for resources, we can finally get politicians, schools and local authorities to listen to us, instead of just saying they do.

Some names in this article have been changed