Action For Autism

Polly Tommey and the Adult Autism Strategy.

Last year I wrote a couple of posts (here and here) criticizing Polly Tommey for pulling expensive publicity stunts that resulted in her meeting with Prime Minister Gordon Brown and his wife at Downing Street. She presented herself as just a mother speaking for thousands of other mothers. Her remarkable success was contrasted with the apparent failure of autism organizations to work together for the benefit of autistic people.

At the time I pointed out that many other organizations had come together to support the Autism Bill, soon to become an Act of Parliament and to to advise the government via the External Reference Group. Chaired by the NAS chief executive, Mark Lever, with an autistic vice chair, it included organizations of autistic adults as well as parents. The only significant absence from the campaign were representatives of the biomedical cure organizations, including Polly Tommey’s Autism Trust, which seemed intent on disregarding the rest of us in pursuit of its own agenda.

The result of all our campaigning and lobbying of government officials and politicians saw the government adopt the Autism Bill, guaranteeing its passage into law, and shaped the adult strategy for autism that was published this week. Then Polly Tommey appeared on GMTV to discuss the strategy. We learned that it was her poster campaign that galvanized the government. They had consulted with her on the strategy and the next step was to be a new poster campaign which presumably would drive the next phase of the project.

Then I turned to Age of Autism (AoA)which provided more details.

In 2009 Polly Tommey was approached by Gordon Brown to represent The Autism Trust within the External Reference Group (ERG).  This followed a meeting with the Prime Minister as a result of The Autism Trust’s “Dear Gordon Brown” charity billboard campaign.  Polly was part of the ERG that helped formulate “The strategy for adults with autism in England (2010).”

Actually, after months of patient negotiation in which various organizations learned to work together and gained the respect of government officials and ministers, I can think of nothing more disruptive to the process than for someone to be parachuted in on the strength of an advertizing campaign and lay claim to all the credit. AoA also suggests that she organized the public consultation on the strategy.

Last year, following the campaign, Polly announced on national television that everybody could take part in formulating this plan; no one was left out of the strategy. It was announced via a direct email address to the Department of Health so that everyone who wanted could get involved.

AoA does not mention the 14 other organizations led by the NAS that campaigned for the Autism Act and organized over a thousand responses from their members to the consultation process. It does not mention any of the other members of the ERG. It does not explain why the ERG report does not list Polly Tommey as a member or that it published its report before she is supposed to have been invited to join it. Nor, if she already has the ear of the prime minister, are we told why another poster campaign is needed. Perhaps it will be aimed at persuading the rest of the autism community that we are all wrong and we should be following her lead instead.

One thing is certain. Although Tommey continues to support Andrew Wakefield and his failed hypothesis you will not hear about that in her campaign to take credit for the success of a movement in which she was at best peripheral and at times a hindrance.

All these organizations supported the passage of the Autism Bill through Parliament. No mention of Polly Tommey’s Autism Trust.

This is the membership of the External Reference Group on Autism that published the Initial Report by the External Reference Group for the Adult Autism Strategy for England. No mention of Polly Tommey

External Reference Group Members

Chair Mark Lever, Chief Executive, The National Autistic Society

Vice Chair and Chair, Choice and Control Group Anya Ustaszewski, Member of the Autism Rights Movement and an adult with Asperger syndrome

Chair, Health Group Juli Crocombe, Consultant in Neurodevelopmental Psychiatry

Chair, Social Inclusion Group Eileen Hopkins, Director – International Development, Autism Speaks

Chair, Employment Group Carolyn Bailey, Chief Executive, Autism West Midlands

Chair, Training Group Clive Stobbs, Chief Executive, Autism Anglia

Members:

Wendy Atkinson Oldham County Council

Chris Austin Liverpool Asperger team

Amanda Batten Head of Policy and Campaigns The National Autistic Society

Richard Bremer Goldman Sachs

Maria Bremmers Autism London

John Dickenson Parent of an adult with ASD

Christina Earl Surrey County Council

Graham Enderby Carer of an adult with ASD

Ian Ensum Clinical Psychologist

Andrew Grainger Autism Initiatives

Ian Hall Royal College of Psychiatrists

Carolann Jackson Parent of an adult with ASD and chair of SAFE (Supporting Asperger

Families in Essex)

Sandra Knaggs Living Ambitions

Ann Le Couteur Professor of Child and Adolescent Psychiatry, University of Newcastle

Marie Lovell Skills for Care

Julie Lynes-Grainger Learning and Skills Council

Campbell Main Parent of an adult with ASD

Melissa McAuliffe East London NHS Foundation Trust

Andrew Merchant Priory

Richard Mills Research Director Research Autism

Chris Mitchell Adult with ASD

Thomas Moore Surrey County Council

Andrew Monaghan Hampshire Autistic Society

Liz Osman Secondee to Treehouse from Connexions

Fred Parsons NORSACA

David Perkins Prospects The National Autistic Society

Rebecca Rennison Policy Officer The National Autistic Society

Carole Rutherford Parent of an adult with ASD

Dinesh Sattee Adult with ASD

David Shamash Member of the London Autism Rights Movement and an adult with Asperger syndrome

Sarabjit Singh Adult with Asperger syndrome

Kobus Van Rensburg Northamptonshire Transition and Liaison Team

Adrian Whyatt Member of the London Autism Rights Movement and an adult with Asperger syndrome

March 5th, 2010 Posted by Mike | National Autistic Society, Polly Tommey, Uncategorized, adults, campaigns, government, politics | 2 comments

Autistic Adult Strategy published in the UK

The UK government have published their strategy for autistic adults, Fulfilling and rewarding lives: the strategy for adults with autism in England. This was welcomed by the National Autistic Society.

The National Autistic Society (NAS) is pleased to welcome the publication of the first ever strategy for improving the lives of adults with autism in England.
Last year, when we achieved the Autism Act 2009, we committed the Government to publishing an Adult Autism Strategy to transform services for adults with autism. The publication of this strategy meets this commitment.
The strategy sets out a number of key actions and recommendations for central Government as well as for local authorities, the NHS and Jobcentre Plus.
In particular, we welcome the following aspects of the strategy.
• Improved training of frontline professionals in autism.
• The recommendation to develop local autism teams.
• Actions for better planning and commissioning of services, including involving people with autism and their parents/carers in this process.
• Actions for improving access to diagnosis.
• Leadership structures at national, regional and local levels to support delivery.
• Proposals for reviewing the strategy to make sure that it is working.
We are particularly pleased that the strategy encourages the development of local teams and the development of local autism partnership boards.
These were key actions that we have been calling for throughout the development of the strategy.

I have just read the report and it is an important step forward. I do have a couple of concerns about the strategy. Michael Baron, who organized a conference on ageing and autism last year copied me into an email that points out that the needs of elderly autistics are largely ignored. This may be because care of the elderly, with or without autism, is low on the government’s list of priorities. Michael also suggests that there is little in the strategy for severely impaired individuals who are least able to offer themselves for employment.

The economic crisis means that there is little money for new initiatives and I am not encouraged by this passage from the strategy.

This not only reflects the current economic
situation, where every public sector
organisation is facing budget restrictions
and is required to do more with less, but is
also in line with the Government’s overall
policy direction of reducing statutory
requirements and encouraging frontline
staff to develop services and solutions
to meet local needs. While we recognise
that these factors make it a difficult time
for public services to respond to a new
strategy, we can no longer ignore the moral
imperative to address the unmet needs of
so many members of our society.

How do they propose to meet a moral imperative without additional financial resources? Part of the answer is in helping autistic people to find jobs.

Over the last few years, the Government
has made it clear that work is the best form
of welfare, the most effective route out of
poverty and a vital part of social inclusion.
However, adults with autism are currently
significantly under-represented in the
labour market. That is why chapter 5 looks
at how we will help adults with autism
into work. It explains changes underway
to the welfare system to better support
adults with autism, through effective work
preparation programmes and through
improvements to our benefits and tax
credit systems.

In the middle of a recession with mass unemployment this may not be realistic. There are lots of autistic adults who are quite able and willing to work right now. What we need is a programme for employers who may be doubtful of the wisdom of employing autistic people and a programme to support autistic people once they are in employment. The structural factors in the labour market that contribute to autistic unemployment are at least as important as the personal difficulties that some autistic people need help with.

Another part of the answer, suggested by the National Audit Commission report which helped to inform this strategy is that timely provision of services may be cost effective if it saves on long term provision and support for people in crisis. In the past this sort of intelligent financing has failed because there is no incentive say for social services to spend money that reduces future costs to the health service. Managers are concerned to defend departmental budgets and have no incentive to contribute to global savings. It will be interesting to see how this is actioned.

The real deal will come in December when the government publishes statutory guidance which will impose duties on agencies to act to meet the strategy. That was mandated by the Autism Act and is a legal requirement that will still be there after the general election, whichever party comes to office.

On balance this is a good start. But this is a long haul, not a quick fix. And as ever, as pointed out by Zoe Thompson on Facebook, it will depend on how well it is resourced and who is monitoring the outcomes.

March 5th, 2010 Posted by Mike | adults, campaigns, government, services | one comment

Polly Tommey Woo-ing Gordon Brown

This post first appeared on LBRB Apr 15, 2009

Polly Tommey was due to see Prime Minister Gordon Brown today after a successful billboard campaign, costing a reported £500,000, that invited Gordon Brown to meet with her if he wanted to save £508 million pounds. Ms. Tommey’s son is autistic and she is concerned that there is a terrible fall off in provision and support when you transition from school to adult services. She wants the government to invest in autistic people and her message is that appropriate support will save the government money by lifting autistic people out of benefits and into paid employment. As she says in her press release:

“We want better support, we want politicians to engage with us and we want the acknowledgement and support that our children deserve as fully contributing members of society.”

This is all very admirable. But Dr Michael Fitzpatrick has written An Open Letter to Gordon Brown in which he questions how she expects to achieve her aim.

In her campaign posters, Mrs Tommey, whose 12-year-old son Billy is autistic, offers to save the UK government £500 million a year by helping people with autism to get jobs. But it is not clear from the posters how she thinks this can be achieved. However, The Autism File, the magazine she edits, focuses on two issues: supporting the campaign led by the former Royal Free Hospital researcher Andrew Wakefield against the MMR vaccine and promoting ‘unorthodox biomedical’ treatments for children with autism.

The main point that Dr Fitzpatrick makes is that if her message to the prime minister is the same as the one she promotes in The Autism File she would be well advised to think again. He ends thus:

If she wants better provision of diagnostic, supportive and educational services, she might consider adding her energies to the long-running campaigns of the National Autistic Society and others, currently focused on the Autism Bill.

Ms Tommey’s supporters have been quick to respond. At The Age of Autism, Teri Arranga accuses Dr Fitzpatrick of carrying out an inquisition against the Autism Trust and quotes Trust Chairman. Oliver Jones who responded to Dr Fitzpatrick as follows:

I am both shocked and astounded having read your open letter on the Internet this afternoon. How dare you act in such an ill informed manner about a campaign that I and many others have invested significant time and effort in - when you evidently have no idea about what we are actually focused upon.
I find it remarkable that a professional person can take such an aggressive stance as you have done about The Autism Trust’s campaign without having the decency or following proper protocol by making contact with any of the Trustees and specifically myself to determine the objectives and intent of our forthcoming meetings.

The tone of the article is plain. The Autism Trust is trying to improve services and quality of life for autistic people in the UK and Dr Fitzpatrick is misrepresenting their aims and undermining their efforts because he resents Ms Tommey’s support for biomedical interventions. Having read the Autism Trust’s lengthy press release I agree with Dr Fitzpatrick.

“A Personal Campaign”

The press release is clear that this is Ms Tommey’s “personal campaign.” She wishes to speak to Gordon Brown “on behalf of the thousands of mothers of children with autism in the UK.” It repeats that this is “Her campaign” and highlights her role as Editor-in-Chief of The Autism File.

Credibility

Ms Tommey obviously has a lot of business acumen and is an astute campaigner who is adept at using the media to position herself “as one of the leading figures in autism in the UK.” But, as Dr Fitzpatrick points out, her support for discredited notions about MMR and autism and her promotion of unproven treatments do call her credibility into question. This is underlined by errors in the press release. Ms Tommey claims that:

autism numbers have increased dramatically in the last twenty years from 1 in 10,000 in 1988 to 1 in 100 today.

As long ago as 1966 Lotter established a figure of 4 in 10000 for severely autistic children. When Wing and Gould examined the broader autistic spectrum in 1979 they found 20 in 10000. The present figure of 100 in 10000 includes people without significant cognitive impairments who were only added to the diagnostic criteria in 1994.

But Ms Tommey uses these false figures to argue that we face a fresh challenge as for the first time a significant number of adults enter the system. This is a direct contradiction of the NAS I Exist campaign which has successfully persuaded the government that generations of autistic adults have been ignored. The NAS is continuously engaged in discussions with government ministers and officials to get a commitment to action based on the provisions of the Autism Bill which enjoys unprecedented support amongst MPs.

Centres of Excellence

The Centres of Excellence proposed by the Autism Trust seek to provide residential communities in rural locations that provide a “safe haven” for autistic adults. They hope that such centres will provide support for autistic adults in the community, setting up in business or becoming self employed. But most people live in urban settings so it hard to envisage how they will benefit. And despite Mr Jones’ protests it is clear that the Autism Trust is as committed as Ms Tommey is to nonsense cures and treatments. Each centre of excellence will feature a wellness centre offering all manner of quackery including homeopathy, chelation and hyperbaric oxygen therapy, as well as training centre and a conference centre promoting these “biomedical interventions.”

I think that Mr Jones’ complaints against Dr Fitzpatrick are disingenuous. If anything Dr Fitzpatrick should be taken to task for failing to mention the Autism Trust in his open letter. At a time when service providers are moving away from the model of self contained autism communities in favour of closer integration of services within everyday society the Autism Trust proposes to build a worldwide network of such communities.

They expect local authorities to fund places in their residential homes while they are free to develop profitable spin offs promoting quackery. Or, as they describe it in their financial model:

The capital development and business operating model will depend on the facility mix and local partners – as well as the engagement and support available from local and national government. A mix of charitable status and commercially self-standing models will be explored in each location.

Danger

The greatest danger is not that Ms Tommey and the Autism Trust are going to persuade the government to follow their lead. But by muddying the waters with their campaign they may give the government an excuse to back pedal on existing commitments while they consult with this self appointed autism constituency. The best way forward is to get behind the NAS campaign and keep up the pressure for the provisions of the autism bill to become law.

July 12th, 2009 Posted by Mike | Polly Tommey, Quackery, adults, government | 8 comments

A better future for autistic adults

Following on from the National Autistic Society’s I Exist campaign and the massive support for the Autism Bill in Parliament the UK Government, after working closely with an external reference group chaired by NAS chief executive, Mark Lever, has launched a

consultation process for the first government strategy to support adults with autistic spectrum conditions (ASC) to live life as full and equal citizens.

The consultation documents can be accessed online at the Department of Health. At present the consultation documents are print only but should be available to complete online before the consultation period ends on September 15th. The consultation only applies to England. The Welsh Assembly Government already has a Strategic Action Plan for Autistic Spectrum Disorders (ASD), published in April 2008. An ASD Strategic Action Plan is being finalised for publication in Northern Ireland and in Scotland the ASD Reference Group has published guidance to local agencies on commissioning services for people with autism. While these separate arrangements may reflect local differences it will be interesting to compare them in order to see how adults are being served across the United Kingdom.

The government has outlined 5 areas of need: social inclusion, health, choice and control, awareness raising and training, and access to training and employment. The NAS has a broader range of concerns on its website which it would like people to consider when completing the government questionnaire.

So, after years of being ignored or ineligible, autistic adults are finally being considered and their views taken into account in formulating statutory guidance for local authorities. So spread the word and mke sure the government hears your views.

This post first appeared on LBRB April 29, 2009.

July 11th, 2009 Posted by Mike | LeftBrainRightBrain, National Autistic Society, adults, government | one comment

Government Responds to Autism Bill

The NAS have announced that the government is to take action in line with the proposals in the private member’s bill currently before parliament. We still have to make sure that the government acts on its word. And it will be interesting to see how they propose to finance their proposals in the current economic circumstances. But for now let us enjoy a piece of good news on the autism front and another success for the NAS campaign strategy that has focused on provision rather than prevention.

Government Responds to Autism Bill

Chief Executive
The National Autistic Society

February 22nd, 2009 Posted by Mike | National Autistic Society, adults, campaigns, government | 9 comments

Autism Bill to go before Parliament

Mark Lever, Chief Executive of the National Autistic Society, has written an article for the Joe Public Blog at the Guardian, welcoming the publication of a private members bill on autism. In the UK members of parliament who are not members of the government are able to introduce private members bills. There is limited parliamentary time to discuss these bills so there is a ballot of MPs and the top 5 get to be debated. This year Cheryl Gillan MP came first in the ballot and she is sponsoring the Autism Bill that has the support of 13 autism charities.

This means that the Bill should at least get a hearing, providing 100 MPs vote for it on February 27th. UK readers can lobby their MPs via a standard campaign letter on the NAS website that includes the option to add your own personal message to your MP. While it is very unusual for private members’ bills to become law, if they generate enough support they may be adopted by the government or form the basis of future legislation. So if you agree with the aims of this bill please lobby your MP.

AIMS

The Bill has three sections.

1. It places a legal requirement on local authorities put systems in place to record the number of people with autism in their area and ensure that they are included in local planning and commissioning strategies.
2. In the transition from child to adult services many autistic people fall through the net because of a lack of coordination between different agencies. The Bill will require a high degree of inter-agency co-operation during planning for transition.
3. Adults are frequently denied services because they do not meet specific criteria set up by local authority teams and are wrongfully deemed ineligible for services. Lack of training in autism means that many health and social care assessments fail to identify the specific needs of autistic adults. Services to meet these needs are virtually non-existent anyway. The Bill addresses all these structural barriers to adults accessing services.

A bill like this is necessary because of the success of the NAS I Exist Campaign in persuading the government to commit itself to developing an adult autism strategy this year. But we have been here before. We worked with the Education Department to create good practise guidelines for schools. We were commissioned by the Department of Health to produce guidance on services for adults with Aspergers Syndrome: Taking Responsibility.

But neither of these documents has the force of law. As late as 2006 the government was still issuing guidance that

clarifies the nature and intent of existing government policy as it relates to adults with an Autistic Spectrum Disorder (ASD). It is intended to encourage people in the social care and health field to develop local agendas for action.

We have had enough guidance and clarification. We want government to give leadership by mandating local government and health authorities to carry out its policies and provide the funding that will enable them to do so. Please support this bill.

January 22nd, 2009 Posted by Mike | National Autistic Society, government, politics, services | 2 comments

Stoller has no idea for Change

Change.org is canvassing for ideas to

be presented to the Obama Administration on Inauguration Day, January 20, 2009 as the “Top 10 Ideas for America.” We will then launch a national campaign behind each idea and mobilize the collective energy of the millions of members of Change.org, MySpace, and partner organizations to ensure that each winning idea gets the full consideration of the Obama Administration and Members of Congress.

At present there are nearly 4000 ideas organized in different categories. You log in to vote and the top three ideas in each category go into a final ballot. One of the categories is Health Care. The most popular ideas in health care are for free or affordable health care, an end to non-medical circumcision and legalizing marijuana, particularly for therapeutic use. Until recently there was an idea related to autism in 4th place.

The author was Ken Stoller,

an anti vaccine activist who offers unproven, alternative therapies for autism like hyperbaric oxygen therapy. So it is no surprise that in his proposal he claims

a positive association between  environmental factors, such as mercury and pesticide  exposure, and neuroimmune illnesses, most notably autism.

No evidence is offered for this positive association, nor for his claim that autism is a neuroimmune illness.  He also seems to think that “pernicious chemicals” found in vaccines are to blame for a lot more than autism.

Many illnesses,  including breast cancer, prostate cancer, Parkinson’s disease,  and Alzheimer’s have their origins in the rising levels of  pernicious chemicals we come in contact with including, but  not limited to, the contents of vaccines.

As the piece progresses it is clear that Stoller is targeting pesticides rather than vaccines. He even cites Rachel Carson’s Silent Spring, in preference to the usual anti vaccine screeds from Kirby, McCarthy etc. Stoller talks about unspecified neurotoxins and carcinogens which he claims are to be found in pesticides and herbicides commonly used in the USA before going on to cite some alarming statistics about childhood illnesses.

Today, almost 1 out of 3  American children suffer from at least one chronic illness, and  12 million have some form of developmental disorder. The  U.S. has the 4th highest incidence of childhood cancer in the  world. Since the 1970’s, there has been a 50% increase in  childhood acute lymphocytic leukemia and a 35% increase in  brain cancer.

Almost 1 in 3 American children are permanently sick? Not exactly. According to this news report

more than 7 percent of U.S. children and youth were hampered in their daily activities by an illness that lasted three months or longer in 2004, compared to just 1.8 percent of children in 1960.

It goes on to list the three most common chronic conditions in childhood: obesity (18%), asthma (9%) and ADHD (5%). Add them all together and yes, 32% is almost 1 in 3. But the most common causes cited are not exposure to toxins but poor diet, lack of exercise and spending too much time indoors, which increases exposure to the dust mites and cockroaches that trigger asthma.

Childhood cancer is another matter and Stoller’s figures do look alarming. But the background information at the National Cancer Institute makes Stoller’s interpretation seem unnecessarily alarmist rather than alarming.

Long-term trends in incidence for leukemias and brain tumors, the most common childhood cancers, show patterns that are somewhat different from the others. Incidence of childhood leukemias appeared to rise in the early 1980s, with rates increasing from 3.3 cases per 100,000 in 1975 to 4.6 cases per 100,000 in 1985. Rates in the succeeding years have shown no consistent upward or downward trend and have ranged from 3.7 to 4.9 cases per 100,000 (2).

For childhood brain tumors, the overall incidence rose from 1975 through 2004, from
2.3 to 3.2 cases per 100,000 (2), with the greatest increase occurring from l983 through l986. An article in the September 2, 1998, issue of the Journal of the National Cancer Institute suggests that the rise in incidence from 1983 through 1986 may not have represented a true increase in the number of cases, but may have reflected new forms of imaging equipment (magnetic resonance imaging or MRI) that enabled visualization of brain tumors that could not be easily visualized with older equipment (3). Other important developments during this time period included the changing classification of brain tumors, which resulted in tumors previously designated as “benign” being reclassified as “malignant,” and improvements in neurosurgical techniques for biopsying brain tumors. Regardless of the explanation for the increase in incidence that occurred from 1983 to 1986, childhood brain tumor incidence has been essentially stable since the mid-1980s.

According to Stoller the cause of all this is the trillions of pounds of pollutants  that are being poured into the environment. The government has failed to act because

the governance of medicine and  science has been overly affected by corrupt corporate influences void of humanitarian concerns and focused solely  on financial gain.

So there we have it. Totally unrelated disorders and conditions are lumped together and blamed on a vague assemblage of pernicious chemicals. Statistics are abused to make the situation seem more scary than it is. Big government and big business are conspiring to cover up the damage they are causing to the nation’s health … again!

There was an idea

related to autism. It is no longer there. Stoller withdrew it when it became clear that it was not going to make the cut. Despite appeals on all the anti vaccine/autism lists for people to vote for it Stoller had only gained round 400 votes and was slipping down the list. Stoller gave another reason for withdrawing. As he was not going to win what was the point of leaving it up? It was only providing a platform for Neurodiversity to attack him in the comments section. Actually one man, Ken Reibel was asking awkward questions and pointing to errors of fact in Stoller’s replies

Ideas for Change

is a great idea itself. Some of the more interesting proposals are generating a lot of serious discussion as well as votes. But Stoller is not interested in discussion. His is not an idea for change. It is the same old anti-vaccine nonsense tagged onto a lot more unsubstantiated claims about environmental pollution backed up by the misleading use of statistics.

This is unfortunate. There is no doubt that environmental pollution is having an impact on the planet that goes way beyond human health. But we need scientists to investigate specific causes for concern and find out what is really happening. When scientists do investigate the hypothesis that there is a link between pesticides and  childhood cancers they often get contradictory results. A review of the literature concluded that

The available literature does not allow firm conclusions with regard to pesticides and any type of childhood cancer. Investing in the acquisition and critical review of exposure information appears to be the crucial step for causal assessment in future research. However, focusing on the presence of pesticides, and not asking the question why they were used, might mask relevant associations to other causative agents.

So, even if we were to demonstrate a consistent association between pesticides and cancer it could well be that the cockroaches or whatever it is we are killing, are themselves the cause. Following Stoller’s lead and imposing a moratorium on organochlorine pesticides would be one heck of a way to find out.

December 22nd, 2008 Posted by Mike | Quackery, government, science | one comment

The case of Ben Haslam

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 | 4 comments

Petition the UK Government for Autism

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,

• Over 50% of children are not in the kind of school their parents believe would best support them.

• 66% of parents said their choice of school was limited by a lack of appropriate placements for children with autism in their local area.

• Only 30% of parents of children in mainstream education are satisfied with the level of understanding of autism
  across the school.

• 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).

• 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.

• Over 40% of children with autism have been bullied at school.

• 45% of parents say it took over a year for their child to receive any support. 

• 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. 

• Parents say the biggest gap in provision is social skills programmes. 

• 1 in 5 children with autism has been excluded from school, and 67% of these have been excluded more than once.

• 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,

• Nearly two thirds (63%) of adults with autism do not have enough support to meet their needs.

• 92% of parents are worried about their son or daughter’s future when they are no longer able to care for them.

• 61% of adults with autism rely on their family financially and 40% live with their parents.

• 60% of parents believed that a lack of support has led to higher support needs later on.

• 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

Autism Education Trust

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 | 5 comments