Channel 4 News carried a worrying story on Monday, 14 July. While I would not go as far as my good friend Kev in describing it as evidence of fascism, it does raise serious questions about parental rights and the use of the law to decide issues of child welfare. The story concerns an autistic boy, Ben Haslam, who was making good progress at The Shires. I say “was” advisedly because Bedfordshire County Council, who were funding his 52 week a year placement, were due to cease payment at the end of the week. This was the result of a high court ruling which upheld Bedfordshire’s appeal against the decision by a Special Educational Needs and DISability Tribunal, aka SENDIST, that had upheld a previous appeal by Ben’s parents against Bedfordshire’s refusal to fund Ben’s place at The Shires.
From the news report it is obvious that Ben, who has severe learning difficulties and no spoken language has benefitted from his residential school placement. He used to constantly demand food and was clinically obese. He was incontinent. He was violent. He was self injuring and very unhappy. After 5 months at The Shires he has lost weight, is almost toilet trained and is a lot happier. As his mother says,
“It’s a pleasure to have him around. It really is a pleasure”
But happiness has a price. In Ben’s case it was £250,000 in annual school fees. This was too much for Bedfordshire who argued that they could meet Ben’s needs for less than half the price, £120,000 to be precise. It was not clear from the report whether or not they had included his need to be happy in their calculations.
Ben’s parents clearly do care about Ben’s happiness. It cost them £43,000, their life savings, to gather the evidence to support their case and hire expert legal representation to win their appeal. Now, after losing in the High Court, they face additional bills for costs, including those of the local authority, of around £20,000.
Bedfordshire propose to educate Ben in a local authority special school and house him in a local children’s care home. Neither the school nor the care home are autism specific. If we consider Ben’s problems prior to going to The Shires, his previous local authority special school, which is now closed, did not exactly cover itself in glory. This is no disrespect to local authority special schools. I teach in one. But I remember two pupils with whom we struggled, who went on to make excellent progress at residential schools. I can think of others I have taught who would have benefitted from the 24 hour curriculum that specialist, residential schools can offer. There is no way that you can replicate 52 week total provision by talking a child into care and bussing them to a local authority special school for 40 weeks a year.
Bedfordshire claim that Ben’s case, like every other, is
“considered individually and according to a child’s specific needs.”
If true this marks a dramatic change from their position of 3 years ago when Bedfordshire were the subject of criticism from government because they were writing generic statements of educational need and leaving it up to schools to decide on provision instead of specifying what provision to make. In the view of the government minister, if this were general policy, Bedfordshire
“will not be complying with its statutory duty and determining the special educational provision in other cases, perhaps the majority of cases.”
So have Bedfordshire put their house in order? Can the Haslams place Ben in local authority care with any degree of confidence? It might help if Bedfordshire agreed to waive costs and remove at least one financial burden from Ben’s family. After all they did tell Channel 4 News that the relevant section of the law (section 20 of the Children’s Act)
“promotes partnership in meeting a child’s needs.”
It strikes me that this is a very strange partnership if it is based on adversarial law and the parents are left making all the concessions and picking up the bill for both sides of the legal proceedings. and the Haslam’s are not a unique case. The BBC disability forum, OUCH!, provoked some interesting comments on Ben’s case.
Take this from a Bedfordshire employee who knows Ben.
I work within Children with Disabilities in Bedfordshire, and have previously worked with Ben. To see the change in him is incredible, and shows that residential schools do offer the best facilities for children with severe autism as they provide a high level of care, knowledge, structure and consistency.
Or this:
Bosscat, you are absolutely right there is no effective provision for severe autism in Bedfordshire. Local provision is based on resources and not the needs of the children and for far too long Bedfordshire has been getting away with funding the cheapest option, which generally means inadequate and substandard provision for our most vulnerable of children. Children with severe autism need access to specialist support for their severe and complex needs; they need extended support beyond the school day, more than this authority can reasonably give.
Or this from a parent in Bedfordshire:
The day-school system is failing children with severe autism in Bedfordshire and lack of resources within the county means that many severely disabled children are being denied access to programmes, treatments and therapies that could significantly improve their quality of life - Ben’s transformation is an example of what can be achieved.
I am one of many parents who have no confidence or trust in Beds children Services. In Ben’s case (and countless others) they have demonstrated a complete lack of understanding and empathy, their sole purpose is to cause misery and despair for those children and their families who are made vulnerable by severe disability and an uncaring authority. It is my sincere hope that those officers responsible for this appalling situation are sacked or at the very least not employed by the new unitary authority that comes into effect next year, anyone who supports them is not fit to hold public office.
The £250,000 cost of care at The Shires School is an average figure when compared with other independent residential special schools offering the same level of support and care. This begs the question of how Bedfordshire can provide the same level of support and care for £120,000? The simple and short answer is that it can’t. It doesn’t help to open the local paper and see that the local authority is spending thousands of pounds on hiring conference rooms, is this really what public service is about?
Apart from the inadequacy of the provision, Ben’s case raises important questions of law. As the Haslam family barrister, John Friel makes clear,
“Either we have a voluntary system or we impose it. If you impose it one would normally go through family court proceedings. So, as this is the first situation in which this has arisen … I think this is objectionable, both morally and politically.”
John Friel’s point is that children are usually taken into care either because the parents are failing their child or because they voluntarily opt for local authority care as being in the best interest of their child. In this case the Haslams are clearly not bad parents. And they are not being offered a choice. They are being coerced into placing Ben into care. The Family Court has not decided that Ben would be better off in care. In fact the Family Court has not even been involved. According to Bedfordshire, the SENDIST tribunal upheld the Haslam’s appeal “on a technicality.” So, presumably, the High Court overturned the SENDIST decision on a similar “technicality.” This whole case has been decided, not with reference to Ben’s best interests, but with reference to arcane interpretations of the workings of English case law.
I agree with John Friel. This is morally and politically objectionable.
EDIT:
I have just carried out a brief edit to remove some garbled code that came with the cut and paste comments from the BBC website and made it look as if I am a Bedfordshire parent. I am not. But my experience in Cumbria and that of many other parents I have met in the course of my NAS activities suggests that Bedfordshire is not the only authority that tries to shoehorn children into existing resources rather than tailoring resources to meet individual needs.
I am familiar with the argument that council budgets are already under a lot of pressure and they have to make best use of resources. But wasting resources on inadequate provision and pretending it is in the best interests of the child is both a false economy and a falsehood perpetrated on families who struggle with disability and the taxpayers who have to foot the bill.
And, as Kristina has noted in her blog on this subject, parents in the USA face similar conflicts. Sharon has blogged this as well and Madeline provides an interesting link to a story by Sarah Spiller, the reporter in the Ben Haslam story. She is an autism parent herself and had to battle through the courts to get proper provision for her child. And so it goes on.
July 20th, 2008
Posted by
Mike |
Autism, autism parents, education, government, parents, politics |
3 comments
Thanks to Bev for alerting me to this story about the emotional abuse of a 5 year old by his kindergarten teacher, Wendy Portillo. Portillo thought it would be a good idea to stand young Alex Barton, who has Asperger’s Syndrome, in front of the class and invite other pupils to say what they did not like about him. Then she conducted a vote on whether he should remain in the class. The pupils voted 14 to 2 to exclude him. He spent the rest of the day in the nurse’s office and has not returned to the school. He screams whenever he accompanies his mother to drop off his sibling at the school. The police have investigated and the district attorney has decided not to prosecute. The school district is still investigating the matter.
Bullying of children with disabilities is commonplace. But I was shocked to read that a teacher was leading the bullying when I read Amanda’s blog about Alex, which suggested that bullying by adults or the sanctioning of bullying by adults who should be defending vulnerable children is a regular occurrence. Amanda also provides a valuable perspective on a culture that not only rewards the “winners” but also sets out to deliberately punish the “losers” as well.
Statements by public figures suggest that we aspire to an inclusive society that embraces diversity. The reality is somewhat different. Amanda asks a very pertinent question.
I also want to know what on earth it means that it’s considered “good social skills” to learn to be one of the people that excludes. And autistic and non-autistic people alike can eventually learn to be that, even if we weren’t much like that to begin with. I’m not trying to say we can’t, I’m not going to pretend not to notice what happens to autistic people who gain the power to become exclusive. But it’s sheer ugliness that these horrible things are treated as normal, and being the target of them makes you seen as somehow worse than the people doing the targeting. And the people doing the targeting are seen as the ones to emulate, it seems like.
I think we owe it to Alex to let the school authorities in Port St Lucie know that this teacher’s behaviour is beyond the pale. There is another way. I am emailing this story, originally posted by Fargo on alt.support.autism to the school principal, Maria Cully with copies to Wendy Portillo and the St Lucie County School Board.
SOMETHING SPECIAL ABOUT BENJI
Once upon a time there was a Benji. He looked like a little boy. He had
brown hair and big brown eyes and a very sweet smile. But Benji wasn’t like
other little boys. Sometimes Benji was very quiet and the other children at school didn’t
think that Benji knew how to play.Sometimes Benji was very noisy and the other children didn’t think that
Benji knew how to be serious.
And sometimes…sometimes Benji was very angry.
There was something very different about Benji.
But all the time, inside, Benji wanted to be like the other children.
He liked to watch them run on the playground. Sometimes they told him not
to stare.
He liked to watch them go down the slide but he didn’t like to go down the
slide himself and they thought he was a sissy.
He liked to play characters in movies and sometimes the kids said he was a
crazy guy.
Yes, there was something very different about Benji.
Then one day, the teacher told the classroom what it was that was different.
Benji was Autistic.
Benji could hear and could see and could feel things. But sometimes he
didn’t know what was said. Sometimes he didn’t know what to do. Sometimes
there were things he didn’t like to touch or to taste.
The teacher explained that while Benji was just like all the other kids on
the inside, sometimes things he heard or saw or touched or tasted got
confused before they reached his brain.
And this could make him very angry because, Benji was waiting and wanting to
be friends.
She told the children that each of them was different from the rest of the
class, just like Benji.
Mary was the tallest girl and Angie was the shortest.
Billy had the most freckles, and Charlie had the longest hair.
She told the class that being different wasn’t a bad thing because being
tall or short or having freckles or having long hair wasn’t a bad thing.
Sometimes it was very special.
She continued to go around the classroom telling each child something
special about them.
Toby told the funniest jokes and Max was the best speller.
Tammy could run the fastest and Richard drew the best airplanes.
Each child was different yet each child was special.
The teacher asked the children to try to help Benji learn how to do the
things the other kids knew how to do. And she asked for them to each find
out the answer to this question.
How is Benji special?
The kids decided to try to help Benji.
When Benji was quiet they would talk to him by saying “It is a nice day”
instead of asking him what kind of day it was.
When he was loud they would say, “Benji, we have to be quiet now. We will
be loud at recess.”
When he watched them run on the playground they would go over to Benji and
say, “Benji, will you run with me?”
And when he was afraid to go down the slide, they did not call him sissy.
They told him things they were afraid to do.
They played like they were characters in movies, too, and Benji joined in on
their games.
But most of all, they stopped calling Benji a crazy guy. Because once they
got to know him…they found out what was special about Benji.
Benji was “Cool.”
Alex is cool as well. I hope someone can tell him that.
May 24th, 2008
Posted by
Mike |
Autism, abuse, bullying, education |
18 comments
Barbara Wilson, the National Autistic Society Regional Councillor for the South West has had a petition to the Prime Minister accepted by the office of the Prime Minister. UK citiizens can sign the petition on the Prime Minister’s website
The petition reads:
We the undersigned petition the Prime Minister to make it
compulsory for Local Authorities, NHS and Social Care to work
together to produce a strategy with guidelines for Autism /
Asperger syndrome including diagnosis, pathways to services
and criteria that are realistic and address supportive and
lifelong support,rather than waiting for people to fall into
crisis before services respond. Also to create a national data
base of the numbers of people diagnosed as being on the ASD
spectrum.
for people on the Autism/Asperger Spectrum specifically to
address the issues on Fair Access to Care and support that many
consequently fall through the services. Also adopting a clear
pathway to services for adults on the spectrum who currently
are referred to as ‘high functioning’ rather than awaiting
their move into ‘crisis’ To include more preventative and
supportive approach. We need to have a national data base on
the numbers of people affected. Currently services are only
estimating numbers consequently do not see the need for
strategies and specific services.
I am sure this petition will strike a chord with many people in the UK and chime with the experience of autistic people and their families around the world. In the UK we have plenty of good practise guidelines for health, education and social care but very little effort on the part of government to mandate these guidelines or provide adequate funding. Sometimes these guidelines come together and are implemented in the provision of children’s services. Even so,
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Over 50% of children are not in the kind of school their parents believe would best support them.
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66% of parents said their choice of school was limited by a lack of appropriate placements for children with autism in their local area.
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Only 30% of parents of children in mainstream education are satisfied with the level of understanding of autism
across the school.
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In mainstream schools only 27% of parents say that all their child’s teachers could adjust their approach and
teaching materials - and therefore meet their legal duties under the SEN and Disability Act (2001).
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Special Educational Needs Co-ordinators (SENCOs) are responsible for co-ordinating provision for children with
autism in schools, yet 23% of parents are dissatisfied with SENCOs’ level of understanding of autism.
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Over 40% of children with autism have been bullied at school.
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45% of parents say it took over a year for their child to receive any support.
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There are more appeals to the Special Educational Needs (SEN) and Disability Tribunal in England about
autism than any other type of SEN. 79% of parents who appealed to the Tribunal in this survey won their case.
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Parents say the biggest gap in provision is social skills programmes.
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1 in 5 children with autism has been excluded from school, and 67% of these have been excluded more than once.
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Only 53% of young people aged 14 to 19 years have transition plans, falling to just 34% of students in mainstream schools.
Source: Make Schools Makes Sense Autism and education: the reality for families today. (NAS 2006)
The Makes Schools Make Sense Campaign did make a difference. The government has responded to our concerns and made a number of commitments designed to improve education for autistic children in England. That still leaves the rest of the United Kingdom. But it is a start.
If the situation for children is bad, then for adults it is dire. This year, the Think Differently About Autism Campaign is focusing on adults under the slogan “I exist” Its main points are that,
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Nearly two thirds (63%) of adults with autism do not have enough support to meet their needs.
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92% of parents are worried about their son or daughter’s future when they are no longer able to care for them.
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61% of adults with autism rely on their family financially and 40% live with their parents.
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60% of parents believed that a lack of support has led to higher support needs later on.
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At least 1 in 3 adults with autism are experiencing severe mental health difficulties due to a lack of support.
Source: I Exist. The message from adults with autism in England (NAS 2008)
Barbara’s petition can only help to focus attention on these problems. Autistic people and their families, along with autism professionals and advocacy organizations spend a lot of time arguing about important issues like causation, cure and the various interventions that are supposed to help autistic people fit in with society. But while we may disagree on how to assist autistic people in coping with society, we should all agree to support Barbara’s petition and campaign to make society better able to understand and cope with autism.
NB. Throughout this blog post I refer to England and link to materials pertaining to NAS campaigns in England. This is a consequence of the different forms of government that pertain throughout the United Kingdom and the way these differences impact upon the provision of services. There are parallel campaigns in Scotland, Northern Ireland and Wales that take account of these differences.
April 23rd, 2008
Posted by
Mike |
Autism rights, National Autistic Society, adults, autism advocacy, disability rights, education, government, parents |
4 comments
The National Autistic Society website proudly proclaims that they are now hosting the Autism Education Trust.
The National Autistic Society is delighted to host the Autism Education Trust and welcomes the opportunity to work in partnership with colleagues across the sector. The trust will play an important role in sharing best practice, influencing decision makers, developing high quality support for early years and school staff and involving children with autism and their families in shaping provision.
So far so good.
The Autism Education Trust (AET) is a new organisation established with funding from the Department for Children, Schools and Families. It is dedicated to coordinating and improving education support for all children with autism in England.
About the AET
The aim of the Autism Education Trust is to create a platform for voluntary, independent and statutory providers to plan and develop appropriate autism education provision across all education settings, including early years.
This is excellent news. I went straight over to the Department for Children, Schools and Families to get some more information … and found no mention at all of the Autism Education Trust. So back to the NAS website to learn that the Department for Children, Schools and Families has only made an initial commitment to fund this for one year. It is actually an initiative of the The National Autistic Society, TreeHouse and The Council for Disabled Children.
The best estimates available to the UK government indicate that perhaps 1% of school children are on the autistic spectrum. Is it me or should the government be making a more long term commitment to financing this initiative?
Never mind, the money is there for now and full marks to the voluntary sector for taking the initiative and persuading the government to provide some backing. The question is, “How can we make the best use of this opportunity?” I suggest that people contact Judith Kerem, the project manager <info@autismeducationtrust.org.uk> if they have anything to offer to this project.
November 18th, 2007
Posted by
Mike |
Autism, National Autistic Society, aspergers, education, government |
no comments
