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TX: 21.10.04 - Autism Education
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PRESENTER: LIZ BARCLAY
THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.Ìý BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE 91Èȱ¬ CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

BARCLAY
In our month long investigation into autism we're looking at education. There are thought to be between 90 and 120,000 children with autism in the UK. The severity of the condition can vary enormously, some may have above average intelligence and be able to cope in school without extra support. But many have severe learning disabilities or little speech, yet there are only around seven and a half thousand specialist educational places. The vast majority of children are taught in mainstream schools in line with the government's policy of inclusion. But the provision of specialist services differs widely across the UK. Last week the school's inspectorate, Ofsted, produced a report which concluded that many children with special needs aren't getting the education they require.
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Lord Filkin is the Education Minister with responsibility for special educational needs. I asked him whether in his view the government's inclusion policy is working.
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FILKIN
The Ofsted report which we welcome clearly shows that the system has got to get better at giving a high quality education to those children with special educational needs in mainstream schools. And whilst we've seen that most mainstream schools welcome having a policy of inclusion clearly we are not happy, nor will they be, about whether the system is as yet delivering good enough results.
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BARCLAY
Well this week we visited a specialist autism school in Meopham in Kent and a mainstream school with an autism unit at Cricklewood in London. Today we're at the Millennium Primary School in Greenwich. It's a mainstream school catering for 250 pupils, a quarter of whom have special educational needs. Some of the pupils have their own one-to-one learning support assistants or LSAs but others don't. Carolyn Atkinson joined Rose Adumijeki [phon.] and her seven year old autistic son Karame [phon.] as they attended the school's end of week good news assembly.
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ACTUALITY - MILLENNIUM PRIMARY SCHOOL
Hello.
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Hello Karame. Are you here for assembly?
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Yes.
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That's the class over there.
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Okay.
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He's very popular in the school, all the children in mainstream school they kind of like chip in to help out.
[CLAPPING]
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Can we have the good news from year three? I see in the book that it's the red numeracy group, so can we have Karame, Ramazan, Aron and Sadira out, brilliant work this week. [CLAPPING]
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ATKINSON
Now we've just had assembly and Karame you were mentioned, was it nice to stand up at the front there?
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KARAME
Yeah.
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ATKINSON
Did you feel proud of yourself?
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KARAME
Yes.
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ATKINSON
Rose, obviously he's taking a full part in the lessons and he's doing extremely well. Was it always like this?
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ADUMIJEKI [PHON.]
No it wasn't. When your child is diagnosed you're going through this pain and you're taking your child from one school to the other and because you - as soon as you mention the fact that he's got autism there's a bit of a pause and so - Oh has he got a statement? - because they're scared, they don't want you to dip into their resources because it's quite pain when they have too many special needs children in the school. He's been here for three years now and there's been a lot of improvement in his life, he's been able to write and read and have friends, make friends with his peers, which is something I really tried my best to make sure he has achieved.
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DENNIS
I'm Amanda Dennis and the head teacher of Millennium Primary School in Greenwich. We believe in full inclusion at the school, we're very proactive in including children in all aspects of school life, they have a full curriculum, they attend playtimes, they contribute in assemblies and really in everything that happens in the school all the children who come are part of all those aspects of it. Each individual child comes with their individual needs and on the statement of education it will give them the number of hours they're entitled to for learning support assistant time, some children have 32½ hours support, some children have 10, so it purely depends on their needs and that's reviewed every year.
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ADUMIJEKI [PHON.]
He has a class teacher and a learning support assistant who is with him for one-to-one tuition and for safety as well because of his disability - he's not aware of danger and he may wander away, so he needs somebody with him all the time.
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WOODS
I'm Kirby Woods and I'm the special needs coordinator. The learning support assistant helps Karame and enables him to do the things that perhaps he wouldn't be able to do independently. That may be breaking down tasks that the teacher has set, and perhaps Karame is unable to follow the instructions and see the big picture or it may be that the LSA is literally just repeating what the teacher has said quietly because Karame hasn't understood the instructions.
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ATKINSON
Funding is always the key issue. If you think or parents think that the children need more support than that how do you get extra funding, how do you give the children as much as they need?
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DENNIS
We often have to fight battles for extra funding for children, that's very difficult to get extra funding, so in Karame's case he gets nine additional hours a week above what's recommended on his statement and that comes out of the school budget. And if you take into account the high percentage of special needs children that we have at the school many of them don't come with enough additional hours we feel to cover all their needs, so it eats into the main budget of the school quite dramatically.
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ADUMIJEKI [PHON.]
As parents what we're fighting for is for the government to cover all the hours they are in school because if they've got autism they shouldn't be excluded from activities because of lack of funding from the government because most of the children they are being funded for like part time hours, well according to the law every child is entitled to a full time education.
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ATKINSON
People who say that children with autism should go to a school that's only for children with autism what do you say to them?
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ADUMIJEKI [PHON.]
I think they should try mainstream education, it does work, it does work, you have to face reality, they're going to be discriminated against whether I like it or not so I want him to be in an environment where we have people who are different from how he is.
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WOODS
Karame's made tremendous progress and he's a star, he's brilliant.
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ATKINSON
He brings a smile to everybody's face.
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WOODS
Yeah we all love Karame.
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BARCLAY
So a positive experience of mainstream education there but both Rose Adumijeki [phon.] and the teachers accept that there's a battle to get the necessary resources. And we've heard similar stories from many of our listeners, as Marion Strudwick puts it, even getting a statement for a child with autism is a struggle for parents as they hit, what she calls, the brick wall of bureaucracy - refusal by LEAs to carry out statutory assessments and then if successful on appeal they're usually provided with statements which are kept deliberately vague, inadequate and often unenforceable. And as ever it often boils down to resources, given the growing number of diagnoses of autism. Lord Filkin, is extra money being put into special needs for children with autism?
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FILKIN
There's a very substantial increase in funding going into education, into schools generally. For example, about £3½ billion is spent it's estimated by the Audit Commission on special educational needs in schools. And that's about 15% of the total school budget. So a lot more money has gone in and it's also of course an issue about how we make better use of that resource.
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BARCLAY
But as we said provision varies. Now piecemeal provision of extra services inevitably means that some parents are dissatisfied with their child's education. Sam Hilton from Crowborough in East Sussex has two children with autism, she's taken the unusual step of creating a new school to cater for their needs but that's brought her into conflict with her local education authority. Liz Pearson has been to the Step by Step school where she met Sam, Max and others involved in the new school.
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ACTUALITY - STEP BY STEP SCHOOL
Come on then let's go in and see your friends.
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HILTON
We opened officially in April but already you can see by the set up of it that it's working, it's a fully functional school and the children are benefiting greatly from it.
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ACTUALITY
Glen are you here? Max are you here?
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Yes.
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HILTON
At first I was very determined that he would go the mainstream route but very, very quickly I began to realise that mainstream for an autistic child is quite a scary place - big classes - and it's all the things that autistic children find hard to cope with. He was producing beautiful work but he wasn't actually producing anything that he understood.
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ACTUALITY
How many people are at school today Max?
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Four.
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You're so clever, you're right there is four. And how many teachers are there?
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Four.
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Four. Wow.
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PEARSON
Unhappy with mainstream and unable to find a suitable special school in her area Sam took drastic action. She and a small group of other local families decided that if the council couldn't give them the specialist autism school they wanted they'd start their own from scratch. Susan James has a seven year old grandson Josh who's full time at Step by Step.
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JAMES
Well we have done a huge amount of research, we've engaged independent professionals - educational psychologists - who are autism specific. We set up this school which has been an incredible struggle and still is but we've put everything in place that we know the children need.
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HILTON
The tutors and the teachers here totally understand the condition and how it affects Max and he's very relaxed here, it's very calm. As Susan said it's been a long hard battle just to get the school up and running and we've all had our own private battles to try and get the children to actually be here.
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PEARSON
The parents invited East Sussex county council to support them in the creation of their school but the authority already had its own strategy for autism which didn't include Step by Step. Undeterred the families decided to go on alone and when the school finally opened after three years of hard work Sam took Max out of his mainstream school for two days a week so that he could join Step by Step.
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HILTON
They told my mainstream school to mark it down as unauthorised absence. They said that we were in their eyes breaking the law by taking them out of their mainstream setting and have insinuated that we are being neglectful parents because we're denying them of the education that they deserve. When in fact I actually see that we're ensuring that they get the education that they deserve.
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PEARSON
Disputes like this aren't uncommon and they're dealt with by an independent special needs tribunal. Sam took her case to the panel, hopeful that they would rule in her favour and order East Sussex council to fund Max at Step by Step. Instead the experience was disappointing.
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HILTON
You felt like you were on trial, it was terrifying in fact. You have to prepare this huge case, you have to get all this evidence together. We got so many reports and they seemed to interrogate us about what we were trying to do for Max, it just didn't seem very fair. They ruled against us based on the evidence that the LEA gave and the tribunal went so far as to say that they thought Step by Step was inappropriate for Max, which I find absolutely crazy because how can a school for autistic children be inappropriate for an autistic child?
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PEARSON
A parent who defies the decision of the tribunal is something new for East Sussex county council. Peter Weston from the council's education department says legally they have no choice but to abide by the ruling.
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WESTON
We sought guidance from the Department for Education and Skills and they were very clear that if we were not satisfied that the provision is appropriate and that's why we're monitoring the progress of the children very, very carefully indeed, then we would have to issue an attendance order.
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PEARSON
So you can't rule out fines?
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WESTON
The legislation regarding attendance is designed for parents who refuse to send the children to school. I've always said that I think it's inappropriate to use that kind of legislation for children whose parents are desperate for them to go to school. That said it is incumbent upon us, we do have responsibilities to those children and if the provision is clearly inappropriate to meet their needs then of course we have to take steps.
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ACTUALITY
Okay, so we've got a 10p and a 5p.
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PEARSON
How much has this actually cost you?
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HILTON
The tribunal cost us a lot of money, that was about - running into thousands of pounds. And to fund Max for two days a week is going to cost us about £6,000 a year.
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ACTUALITY
I want it now. He said.
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HILTON
You're being made to look like a criminal or an uncaring mother and I've just done my best for him and it's hardly neglectful. There are days when you just feel like you can't go on anymore but you have to and when I look at Max's face and I see him I just think I can't let you down, I'd be letting him down if I didn't carry on this fight and I wouldn't be doing my job as a parent properly if I just let them do what they wanted with him and that's the whole problem all along - policies have been dictating what happens to these children rather than the children themselves.
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BARCLAY
Sam Hilton ending that report. Now whatever the rights and wrongs of that particular case it does highlight a common concern - the confrontational aspect of parents trying to get special education for their children. Sam there talked about the conflict with the local education authority and mentioned the intimidating atmosphere of the tribunal that she not only had to attend but had to pay for. According to the National Autistic Society there was a 47% increase in such tribunals involving children on the autism spectrum between 1999 and 2003 - those are the latest figures available. Lord Filkin, why the big increase do you think, despite the high costs running into thousands of pounds?
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FILKIN
It's free to go to a tribunal ...
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BARCLAY
But in order to win it - I mean Sam Hilton there was looking at costs running into thousands of pounds in order to win a tribunal.
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FILKIN
Well let me not go into the detail of that specific case but tribunals are meant to be easily accessible for people without legal aid in most cases. You're quite right though that there has been a substantial increase in the number of appeals to the tribunal involving children with autism. I think that's probably because of two things. First of all more children are being defined as having autism and therefore in a sense the statistics are categorising cases as autism when previously they would have been bundled up with other forms of special educational needs. But more fundamentally I think also it does raise questions, which in a sense your sad report just then was illustrating, of a system where it is all too easy for it to feel that it's the parent in conflict with the education authority and the school.
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BARCLAY
But the obvious conclusion is that the system simply can't cope with all these additional special needs and that local education authorities are forced to stonewall, simply so that they can balance their books.
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FILKIN
Well I think that's why I want to look further at how it's happening. Clearly a high level of appeals to a tribunal and then a high level of success in appeal to a tribunal raises some significant questions. Because clearly you want the system to be able to work well without having to go to a tribunal. Therefore I shall be asking officials to look in more detail at that and I shall be discussing with SENDIST and with LEAs how we try to avoid the need for parents to go to tribunals if it's possible.
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BARCLAY
Who are SENDIST?
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FILKIN
Sorry SENDIST is the special educational needs and disability tribunal.
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BARCLAY
Another issue here is that there are a large number of interventions for people with autism but it appears from calls that we've had some of the local education authorities will pay for some interventions, some will pay for another, isn't it time that the DFES clarified the situation?
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FILKIN
I think we've given a lot of guidance and advice and are giving more. We've given in the national service framework, which was published recently, a practical illustration of how to care for a child who is diagnosed as autistic at three and it's a practical illustration about how services should work together in the future. And that's certainly one of the central thrusts of government policy - about how to get it better between the different services to support a child and their parents.
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BARCLAY
But you're talking about guidance, you're talking about practical illustrations of how the system should work, this is not statutory.
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FILKIN
Perhaps I should go on also. We're also putting SEN expert advice out in the field, we've also got SEN regional partnerships looking at autism as well. All of these things are intended to support LEAs and schools on getting it better and getting it right for autistic children. There's only so much that it's sensible to specify at the centre, we have to be clear on the general direction of policy but we have to support parents, we have to support children and LEAs and schools on making it work in localities better.
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BARCLAY
When will you have looked at these issues, when can we come back to you and say what has changed?
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FILKIN
Well I'm happy for you to come back in six months time and talk further if you'd like to. These are not sudden initiatives, they're issues that we have been working on and we launched in February of this year our strategy setting out how we thought that the system at both national and local level needed to move forward and dealing better with children with special educational needs.
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BARCLAY
Lord Filkin, the Education Minister with responsibility for special educational needs and we will be inviting him back on the programme in six months time to discuss progress. Tomorrow the author Nick Hornby and his ex-wife Virginia Bovell will be giving us their very personal account of the battle they've had to fight to get suitable education for their autistic son Danny.

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