Paces

Queen's Speech & SEN - more next week

We can, next week, expect DfE Ministers to set out their detailed response to consultation on the SEND Green Paper "Support and Aspiration" and a timetable for what they are describing as the biggest reform of special education in 30 years.

In a DfE press release, accompanying the Queen's Speech to Parliament yesterday, the Minister, Sarah Teather, says, "In our Green Paper, Support and Aspiration, we set out plans for the biggest SEN reforms for 30 years – giving parents real choice and joining up health, education and social care services." (In fact, the SEND Green Paper does not set out "real choice" for parents when it comes to choice of school; as a careful reading shows, it sets out arrangements for expressing a preference; not at all the same thing, but let's not quibble here just now.)

Yesterday's Queen's Speech, which sets out the Government's proposed legislative programme for the coming year, announced "My government will propose measures to improve provision for disabled children and children with special educational needs." (Full text: Guardian)

A Children and Families Bill, to be introduced "early in 2013", will cover SEN, adoption, family law, shared parenting and the Office of the Children's Commissioner. The key measures of the SEN element will be:

• replacing SEN statements and Learning Difficulty Assessments (for 16- to 25-year-olds) with a single, simpler 0-25 assessment process and Education, Health and Care Plan from 2014
• providing statutory protections comparable to those currently associated with a statement of SEN to up to 25 in further education – instead of it being cut off at 16
• requiring local authorities to publish a local offer showing the  support available to disabled children and young people and those with SEN, and their families
• giving parents or young people with Education, Health and Care Plans the right to a personal budget for their support
• introducing mediation for disputes and trialling giving children the right to appeal if they are unhappy with their support.

The SEND Green Paper was published in March 2011. In September 2011, DfE announced arrangements for 20 'pathfinder' projects, covering 31 local authorities, to pilot the Green Paper reforms. "The interim evaluation will be published in autumn 2012 and final evaluation in 2013. The work of the pathfinders will continue to inform the changes we make to legislation through the Bill."

And that's about it. You can read more on the Department for Education website, where there are all the links mentioned above: "Children and Families Bill to give families support when they need it most".

Me? I'd like to see a Bill setting out truly radical changes in the education and upbringing of children with cerebral palsy - and I'm talking training, pedagogy and curriculum as well as the role of local authorities in assessment, provision and funding.But that's a debate for another day. Alternatively, you can read Scope's first response, in the form of a statement from CEO Richard Hawkes "Scope responds to the Queen's Speech".

We'll have to wait and see the detail. The measures for extending assessment and planning to 25 years particularly interest me, given Paces' long-standing commitment to achieving 'independent adulthood as active citizens' - and how that provision is to be funded. "Ambitious About Autism", "welcomes the commitment made in today’s Queen’s Speech to extend the legal right to educational support up to the age of 25 for young disabled people". On the other hand, these provisions need to relate to the provisions of the also-proposed draft bill to modernise adult care and support, about which Mencap has this to say "We now have serious concerns about the Government's desire to address the crisis in social care and move beyond the limited remit of the draft Bill. People with a learning disability and their families are increasingly unable to live full and independent lives".

To end this post on a positive note, then. This, which I agree with, from Mark Atkinson, Director of Campaigns, Policy and Research at Ambitious about Autism on extending entitlement to 25 years: “This reform has the potential to revolutionise the life chances of tens of thousands of young people with autism who are currently denied access to any educational opportunities beyond school."

More next week ......

Hanif Kureishi can't skip .... but he is an artist of his own life #CondEd

Here's an article I think most of us in Conductive Education will understand. Unfortunately, it's in yesterday's Sunday Times Magazine section, behind Rupert's paywall: Think and You'll Miss It by writer Hanif Kureishi.

He begins with an amusing admission that, having recently tried, he cannot skip with a rope; his 13-year old son, on the other hand, to whom he handed the rope, "did the whole thing backwards, singing a Beatles song".

Which leads him shortly to:

"My son who can skip and sing, found it difficult for a long time, to read and write at the level of others his age. At primary school he was castigated, even insulted and punished for his inability. After the experts were called in, he was investigated and berated some more, and finally labelled dyslexic and dyspraxic.

"There is, at least, some relief in diagnosis. One is not alone, joining a community of others who have, it appears, a similar condition. But can the inability to do a particular thing be described as a "condition" at all. Would the fact that I can't do the tango, read music or speak Russian be considered a "condition"? Is it a failure of my development? Am I ill?"

He then considers that he was "not much impressed by the imagination and curiosity of the experts" who used an "awkward, objectifying language" and quickly began to talk "fashionably, about brains and chemicals", observing that "Biological determinism is one of psychology's ugliest evasions, removing the poetic human from any issue." ... "What I'm talking about here, I believe, is the attempted standardisation of a human being, and of a notion of achievement that is limited, prescriptive and bullying".

I doubt I can do justice to the main part of his article, but here goes. An 18-year old known to Kureishi, mentioned having been given Ritalin to help him focus, "his mind, he said, kept going off in numerous directions". Rejecting Kureishi's suggestions for alternative causes, the young man, says Kureishi asked himi if "given the choice, I wouldn't prefer to focus at will". This leads Kureishi to consider his own teenage years when "I wanted to be good at things, but, like the Ritalin boy, I fell badly behind at school, finding myself not only unable to learn but at the bottom of my class".

He then goes on to make a powerful case for the value of distraction, provided that the individual be able to "distinguish between creative and destructive distractions by the sort of taste they leave ... and this can only work if he is, as much as possible, in good communication with himself - if he is, as it were, on his own side, caring for himself imaginatively, an artist of his own life."

"There might be more to our distractions than we realised we knew. We might need to be irresponsible. But to follow a distraction requires independence and disobedience; there will be anxiety in not finishing something, in looking away, or in not looking where others prefer you."

It's a challenging thought.

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All the italics here are mine.

 

"Care" is not enough

"Let's not put those with learning disabilities on the scrap heap" urges John Buchingham at the "Labour List" blog.

Prompted, I suspect, by the recent abuse revelations from BBC Panorama at the Winterbourne View care home and, perhaps specifically by a speaker on BBC Question Time, the central point John makes is, in my view, an absolutely correct one:

"So let’s focus not on who owns care homes; but on changing them from just ‘care’ homes into extensions of schooling – into places where those with delayed abilities can continue to learn ...."

John opens his blog post with an observation about how, for people with PMLD, the experience of leaving school can be very different from that of most people. John is making his point mainly around communication but he might have made the point more broadly true - and perhaps does so when he writes: "Learning is a lifelong process for all of us – but even more so for those who learn less quickly and who need extra help".

As someone involved with the conductive schooling of children with statements of special educational need and then with the same group as they make the transition to adulthood, I come back time and time again to wondering what, in the ideal world, conductive education should be offering this group. At Paces, we have experimented with some innovative ideas - but have precious little funding to establish something sustainable.

The recent SEN Green paper proposes a single "straighforward plan" covering 0-25 years, which points in the right direction as far as "the family's ambitions for their child from the early years to adulthood". However, this aspiration may not have the concrete detail that John Buckingham is reaching for so that learning is lifelong for everyone. For that to be a reality for people we at Paces try to help, we all need to be asking how learning is sustained at 35, 45, 55 and older.  Simply being in "Care Homes", whoever runs them, does not go far enough, as John says.

ICF & CP - a link. Maybe useful to you too?

Over on Andrew Sutton's blog, prompted by recent posts on László Szögeczki's blog, and there too, are discussions about ICF (the International Classification of Functioning, Disability and Health) and conductive education.

Thinking I ought to learn more about the ICF (why is it not ICFDH? and what is ICFDH-CY?), I did some googling about. I came across this website of the Sunny Hill Health Centre for Children

Looking a little down the page, I found and downloaded two documents:

ICF-CY CP core sets powerpoint

Text of Veronica's talk

"Veronica" is Veronica Schiariti, MD MHSc PhD (C), Developmental Paediatrician, Children and Youth with Disability in Society (CYDiS), Child Family Research Institute, University of British Columbia.

It's all quite recent: May 3, 2010

Actually, a bit of a confession: as Sarah's Dad, I've never quite 'got' all this "medical", "health", "treatment" "habilitation" "rehabilitation" stuff. OK, she's had a couple of operations but so have I and a friend has had both hips and knees 'done' and he hasn't got CP. Sarah's really rather healthy. Always has been. Good appetite too. No - what first triggered me & CE was her education and what was or was not happening for her at school. And CE quite quickly got me thinking about her upbringing (her nevelés) and what her Mum and I should be doing about that (I really will read Dina, one day, Susie) so it all rolled into "learning" for me or just her "growing up". And now I'm busy doing exactly the same for my grandchildren (the youngest, Ryan, is 4 tomorrow; the next, his cousin Maisie, starts big school in September; his sister, Ria, has already got school and teachers sussed and his cousin Billy, well he's 6 going on 6-and-a-quarter, so what's new!). But I'm thinking about their schooling and how they're getting started on behaving as little learning animals with a lifetime of learning ahead of them - not their health. I think about their health only when they are not well. Same with Sarah. Now I know that our experience with Sarah and her CP is not everyone's experience. I know that not all people, with and without CP, are fortunate with their health.

But there's this: why can't we stop talking (or just leave to the medics) all the different classifications of CP and simply talk about whether Sarah (when she was at school) should or should not learn French, or do music (not, so help me, "music therapy") and stuff. She'll be home in a minute. She's been out to the pub up the road with a couple of friends (staff) from Paces and she'll have had a really great time. Just like everyone else in the pub (except the sad guy in the corner). How did she learn that? Not by getting her ICFDH classification right.

Too stupid for words?

Coincidences. Don't you love them?

I'm in that minority of the TV-watching public who finds no interest in "Britain's Got Talent". So it may be no news to you that Susan Boyle is a person with some sort of learning disability. I only learned this reading press reports after her apparent breakdown after coming second in the final. The Daily Telegraph has just one such report. 

A couple of days before that I read of the Nottingham Mum, "Rachel", who is "too stupid to keep her child": and that was the front page headline in the Sunday Times. Mum, who may or may not have a learning disability, is now fighting Nottingham social services to stop her baby being adopted, it seems. Mum was also deemed "too stupid" to instruct legal advisers so she was represented by the official solicitor - who declined to contest the Council's case.

I can think of people whom I might regard as "too stupid". But these would generally be people who ought to know better. One might think of some bankers, maybe, or some MPs. What I would not do is regard someone with a learning disability as "too stupid"; never mind calling them that. Nor, for that matter, have I enjoyed the abuse heaped upon Susan Boyle for her looks.

What do you make of it all? What do these two stories tell us about our society's view of people with a disability? 

On Woman's Hour (BBC4 1000am - you might be able to hear it via the web) this morning (I listen to anything on Radio 4 when I am driving), a Mum of an 11-year old with cerebral palsy was telling of her experiences as a "carer" (that is, a parent, but lets not get into a PC quibble here). She said that she hated leaving their house with her daughter because she knew that they would be stared at. After 25 years and more, I still hate that too.  The point was, she talked of the need she and her husband had for support.

And that might be what the two stories, of Susan Boyle and "Rachel" have in common: an absence of and a need for support in any meaningful sense. Mencap apparently take the same view in the case of Susan Boyle at least: "Mencap spokesperson says that singer with a learning disability needs the right support". 

And, as the Mum on Woman's Hour makes clear, so do their parents.

Hopeful signs on consultation with parents in Sheffield

On Friday morning, I went along to a demonstration by parents of children with autism, who were giving voice to their concerns about lack of consultation on the part of Sheffield Children and Young People Directorate, especially the SEN team, in the implementation of wide-ranging changes in the schooling of children with special needs. I was especially keen to meet the organiser, Claire, with whom I had spoken on the telephone earlier in the week and whom I shall be meeting next week.

I am posting Claire's report of the demonstration, circulated by email, partly in the hope  of giving it wider circulation locally, and partly to share with a much wider community who are struggling with similar issues, something of the flavour of what is currently happening in Sheffield.

(As a revealing aside: a representative of Paces School, which is the only independent non-maintained special school in Sheffield, was not invited by the SEN team to attend the meeting in question.)

Consultation with parents on strategic planning is essential to the implementation of the Government's education policy - for instance as  evidenced in Every Child Matters. (The same is true in adult services strategic planning, by the way). Slowly this message is seeping throughout local authorities and changing embedded cultures of paternalism. As one who is a strong advocate of consultation, partnership and collaboration, I am therefore optimistic that the report below brings hopeful signs, here in Sheffield, on consultation with parents of children with SEN, a road which the City's adults with learning disabilities team has already set out on, led by Richard Parrott, the Strategic Commissioning Manager, with its wide consultations at the draft stage of an extensive Strategic Plan. It is encouraging to see parents once more starting to reach out to each other, beyond the specific disability of our children, and attempting to contribute to real change.

At present, Sheffield does not have a Strategic Plan for the education and schooling of children and young people with disabilities. That is a serious omission which must be addressed by the new Director when she takes up her post.  A strategy is simply a plan. It is difficult to imagine how any local authority, let alone the fourth largest city in England, would wish to proceed to the implementation of education and schooling arrangements for children with disabilities without a plan to do so, to which parents have essentially contributed and which is widely accepted by all those it concerns and benefits.

Small signs - yet cause for some hope that we can move forward. Take a read for yourself.

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Today's parent demonstration went ahead as planned.  The LEA had moved the venue just 20 hours before the meeting, so parents held a protest at the original venue (Salvation Army on Psalter Lane) which was attended by the local press (look out for coverage/photo in local press) and also attended the new venue (Mega Centre) where representatives of Sheffield special schools and integrated units were handed a flyer about our 'No Voice' campaign.  (Copy attached below for your information).

We understand that, in the meeting with Mariam Haque (Head of SEN Sheffield), Jane Ludlum (Children Services) and David Dickinson (SEN Advisor, National Strategies Team), the representatives from the special schools and integrated units of Sheffield, raised the same concerns about failure to consult and the inherent weaknesses of the proposals.

As a result of the parent campaign and the concerns of the teachers and schools Jane Ludlum has agreed to 'tear up' the June 2007 paper 'Learning Difficulties and Disabilities (LDD) Development Paper', prepared by Mariam Haque, which outlined the proposals for change. (See details in 'No Voice' below).  She referred to a 'blank piece of paper' re the future of special education in Sheffield.  The LEA will reconvene work on SEN in September.  A working party, together with a series of sub-committees, will be set up.  We have received this information informally, and are awaiting official confirmation from the LEA about this change of direction.

This is a tremendous result.  Thanks to all parents who have been involved in this campaign.

However, this is just the beginning of our campaign to be consulted in the planning and implementation of improved educational services for our children. We are now looking at ways to organise our campaign (both in terms of creating an Autism Alliance, and in terms of creating an over-arching Alliance of all disability/special needs groups), to facilitate and formalise our role in consultation processes.  So stay in touch!

Claire

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“NO VOICE”

 

The Campaign to stop Sheffield Education Authority making Changes to the Education of Children with Special Needs Without Consultation

 

We are the parents of children with Autism and Aspergers Syndrome, joined at today’s protest by representatives of other disability groups. We are here to draw attention to the changes made to the special education system in Sheffield for all children with special needs. These changes have been made without consulting either parents, the children themselves or (in any meaningful way) the teachers and schools who support the children.

 

It is hard to say exactly what these changes will mean to individual children with autism since there has been no meaningful consultation.*  But it seems that the following changes will, or have already, taken place:-

1. Special school and integrated resource placements will be seen as short-term options for children with autism. The vast majority of children will be expected to spend no more than 1 to 2 years in these provisions before they are placed in their local mainstream school.
2. Mainstream schools will be expected to support the complex needs of all children with autism through a SEN budget devolved from the LA to the school. The new budget does not recognise the financial implications of the existing Statements of Special Educational Needs, (the legal documents that identifies and quantifies the specialist support required for each, named child with autism).  It is the Local Authority’s policy to reduce the number of Statements issued and maintained regardless of the number of children with special needs.
3. Specialist services for children with autism (which are already extremely limited) will be absorbed into a generic service serving children with any kind of disability.  The “autism service” has already been disbanded.

 

Parents, in collaboration with teachers and schools, are the first to recognise that there is a need to improve educational services for children with autism in Sheffield, and that the ideal scenario is for children and young people with autism to be successfully and happily ensconced in their local school and community.  However, the barrier to this ideal is not organisational and structural change within the LEA offices. The real obstacles are the need to recognise that autism is a lifelong developmental condition that impacts on every aspect of everyday life, the need to recognise both the quantity and expert nature of support required to work effectively with children with such a complex condition and the need to understand that effective services are planned round the child, not dictated from some remote office.

 

It is difficult to comprehend how the Local Authority intends to make progress with such a complex matter without involving the real experts – the children themselves, their families and the teachers.

 

* See Sheffield Council papers on Agenda item 3, 6 June 2007, “Learning Difficulties and Disabilities (LDD) Development Paper”.  To our knowledge this paper, which outlines proposals for Council changes to SEN, has not been widely distributed.

Can the Government count?

" In a report today from the Centre for Disability Research (CDR), the country's top experts admit: "It is not possible to estimate the numbers of adults with learning disabilities in England either from information held by central government departments or from large-scale, population-based surveys."

Describing this as a "brutally honest assessment" that is "startling enough in isolation", the Guardian's public services editor, David Brindle, today ("We need to know more about disability", Guardian 28 May) goes on to set this statement against the £4bn and "spiraling" expenditure on learning disability that "If you include the Supporting People programme .... accounts for almost a quarter of all personal social services expenditure".

David Brindle is clearly not advocating a reduction in spending. Rather he is endorsing the CDR report, asking "how can we make sensible judgments about the future when our knowledge is so poor?"

The report "People with Learning Disabilities in England" was commissioned by Mencap.

Heather Honour, director of the Learning Disability Coalition, said:  "We want to know how the government is doing its sums for learning disability services, when crucial information about learning disability isn't available.

"Without solid evidence on the emerging trends affecting demand for services, government cannot accurately estimate the resources needed to meet the rights and individual needs of people with a learning disability – both today and in the future.

"In addition, more research needs to be done into the number of family members and friends providing unpaid care, especially older carers. Not only do these carers need support now, but without clear information the government cannot be sure that the social care system will support those people with a learning disability when their parents are no longer around to care for them."

Indeed, it might be said that without the data - and, one might add, without the definitions, as to what in practice constitutes a learning disability, for instance - any planning of any sort is impossible.