May 28, 2008

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.




May 20, 2008

Paces’ business is supporting families.

Paces’ business is supporting families.

Paces is a strategic project: aiming at nothing less than the transformation of opportunities open to parents in the upbringing of children with motor disorders.  Paces’ strategic vision is the embedding of ‘conductive education’ routinely in the institutions with which parents interact: locally regionally, nationally.

The Paces’ Project is not solely about being an outstanding small, private special school, somewhere in South Yorkshire – no matter how excellent Ofsted says that school is; no matter how proud we are of its success. 

For Paces, like ‘conductive upbringing’, is about Life not only classrooms. Paces is about banishing the fears of parents for our children becoming adults – and giving substance to our hopes: for our very youngest children even before school; and for when they leave school, venturing into adulthood, independence and citizenship.

Our children. Our hopes.
Paces is of parents, by parents, for families.

The Paces Campus is an exemplar; a test bed; a model; as much a beacon as a service; a way of demonstrating what can be achieved that cannot be denied. It is a place of co-operation and collaboration; nationally unique and innovative; serving two communities with a distinctive governance form; which should, like all the groups and people that comprise the Campus, be celebrated.

For all these reasons, we are engaged in winning ‘hearts and minds’; in taking our proposition not just to parents, wherever we can reach them, but to those who make public policy and decide strategy; who manage public services’ delivery and control budgets; those who promote research and provide training; those who would be sponsors and friends. We must keep inviting, talking, engaging.

The road is not easy. The temptation - the release from frustrations, the escape from knock-backs - is to retreat into thinking operationally; to imagine that having and building a fine school is all that really matters; to settle for that.

Unless it is simply to be an oddity, a local one-off, sooner-or-later unsustainable, Paces is and must continue to be, above all, strategic. That is how we will best support families.

May 13, 2008

Too much learning is a dangerous thing

By chance, this morning, I came across the following FAQ-type posting on the web site of the Downs Syndrome Association. Whether the question is genuine or not and when it was posted, is not clear.


"What advice do you have for an infant school teacher, just about to accept their first pupil with Down's syndrome?

Most schools that are accepting a young person with Down’s syndrome will be doing so for the first time and those who may have had a child previously should not make the assumption that the child will have the same kind of personality. Being concerned and asking for information is a positive first step.

Too much information on the child’s disability can become a barrier to effective inclusion and can lead to a situation where both staff and children see the disability first and the individual second."

In what other area of human activity would a practitioner be told that "Too much information" is bad? That "too much information" is a "barrier" to doing the job properly? And what is 'doing the job properly'? Answer: "Effective inclusion".

Think of it: the supposed-infant-school-teacher is seeking advice on the professional  practice of being a teacher. There are many ways this question might have been answered (not including the obvious one as to why her/his initial training has failed to equip him/her properly,  or, lacking the training, she/he is being entrusted  with the education of a child for which she/he is not equipped). From all the possible answers to this question that might enable this poor teacher to be a better teacher, the answer given is about "inclusion", as if that is what matters most in the education of the child, the most important thing for the teacher to be told in preparing to receive a child with Downs Syndrome into her/his class.

Too much learning is evidently dangerous.

May 09, 2008

Writing this blog

One of my initial purposes in setting out ot write this blog, was to explore what I might use it for and how I might use it - or "learning by doing". Two current "work in progress" notices then:

I am currently abandoning the system of a short list of 'Categories' with which I began in favour of something that looks more like 'Tags' as used on sites like deli.cio.us, for instance. It will take a while to  adopt that fully and until then, the 'categories' will not work properly. Apologies.

Having introduced a music 'playlist', I've tried to bring variety by regularly changing the track playing. Until a moment ago, the track was from "Koyaanisquatsi", the musical score by Philip Glass for the amazing and very contemporary film of the same name. ("Created between 1975 and 1982, the film is an apocalyptic vision of the collision of two different worlds -- urban life and technology versus the environment.") "Koyaanisquatsi" is a Hopi word meaning "Life out of balance". I also saw it translated as "If this is Life, there's got to be a better way".  Made me smile, anyway. Actually, what I intended to say was that if you want to turn the music off - to watch and listen to the YouTube video of Glenda Watson Hyatt for instance - you can do so on the Playlist box at the bottom right corner of this page; just pause it.

Is this not a species of insanity?

I have asked before on this blog, when and where the debate on the education of children with motor disorders such as cerebral palsy is taking place.  I was interested then to read in an email I received this week, the announcement of a "Cerebral Palsy Feature in the July/August issue of SEN magazine" and inviting Paces to buy advertising or advertorial. "The lead editorial will be produced in conjunction with Scope," the email informed me.

It's not often cerebral palsy features in any educational context, so I responded by enquiring about the content and "angle" of the lead editorial. Impressively quickly, I received the following reply: "The lead editorial in the Cerebral Palsy feature will provide an overview of the condition. It will then go into detail about how the educational sector will cope now that more and more children with disabilities, especially those with cerebral palsy, are going into mainstream schools."

This is all I have and it would not only foolish but also quite wrong to prejudge the content before it is published. Nevertheless, I am not encouraged.

Why so?  Firstly, because a professional journal that was proposing to do more than re-hash the traditional "overview of the condition" would be promoting itself by trumpeting "a challenge to traditional views of cerebral palsy in education". That it is not doing so, makes me fear yet another re-hash.  Secondly, "it will then go into detail about ....". About what?  There are some extremely important questions that need addressing:  Why do we in the UK & NI not require our teachers of children with almost any disability, to gain an understanding of the disability before they set foot in the classroom?  Why do we reject the need for pedagogies specific to specific disabilities? Ditto curricula? What can neuroscience teach us? Where is the research? One could go on. These are questions of national and even international importance if we are to bring about necessary change in the education, schooling and upbringing of children with cerebral palsy. These are questions of importance to the children themselves and their families.  Instead, it seems SEN Magazine is proposing to give over rare and valuable space to focus on  ... problems experienced by teachers in mainstream schools; on "how the educational sector will cope now that more and more children with disabilities, especially those with cerebral palsy, are going into mainstream schools". In other words, having blithely followed the yellow brick road of 'inclusion', the only thing it seems worth talking about is what to do with the children now we have got them there. Shouldn't we have thought about this first?

I am not opposed to the inclusion of everyone in all the opportunities open to us all. I am opposed to the notion of "one size fits all, local schooling", (though, of course, now that certain sections of the Labour Party are busily adopting  lotteries as an answer to allocating school places , it is logically impossible for them to advocate all children inclusively attending their local school).  I am opposed to compulsion in education. I am in favour of a definition of "inclusion" that does not argue for compelling sameness, but recognises our diversities (were there not diversity, you would not need to argue for inclusion), puts parents' wishes first and promotes alternatives and choice.

A local primary school is faced with its first pupil with cerebral palsy. They will admit, privately, that they have not a clue how to teach this child (learning difficulties, a touch of autism maybe, some visual impairment, weak fine motor control - but able to manage an electric wheelchair). Sheffield is heading towards the closure of its only specialist school for children with physical disabilities. Barnsley did so some years ago. Doncaster is, I believe, doing so this year. Rotherham I know not of. And all of this is happening before we have any debate on training or pedagogy or curriculum .... and with the result that SEN Magazine can think it appropriate, even important, to have a special feature, not on the needs of these children, not on the wishes of their parents for alternatives nor on the latest research into the education and upbringing of children with cerebral palsy but on "how the educational sector will cope".

Is this not a species of insanity?



May 08, 2008

Misbehaving Woman

OK so the Title to this posting is a tease. But someone for whom I have enormous respect, who I personally find an inspiration in my own life at home and at work, and whom I had the honour to meet last year along with Darrell, the great guy who is her husband,  was nominated for an award at the "Misbehaving Women of the Year" event in March in Vancouver, Canada.

As far as I know, she has no interest in or maybe even no special knowledge of conductive education. It's just that as a person, as a blogger, as an author, she is amazing. "Ladies and Gentlemen," as they say, "courtesy of YouTube, I give you Glenda Watson Hyatt, being nominated for her award, and her short thanks afterwards. Take a look for yourself."

May 01, 2008

Putting in a word for Buddy Bear and Conductive Education

Yesterday, following the lead taken by Andrew Sutton, I sent the following letter together with the separate  attachment below it, in support of Buddy Bear and Conductive Education in Ireland.

30 April 2008.

The Rt Hon Dr Ian Paisley MP MLA. First Minister.
Mr. Martin McGuinness MP MLA. Deputy First Minister.
Office of the First Minister and Deputy first Minister
Castle Buildings
Stormont
Belfast
BT4 3FW

Dear Dr Paisley and Dear Mr McGuinness

Conductive Education in Northern Ireland

Like Brendan McConville of the Buddy Bear Trust, I too am a parent who has sought to achieve change in the education of children with cerebral palsy having experienced conductive education in the life of my daughter, in my case through founding the registered charity Paces in 1992 and helping open Paces Campus and School in Sheffield, England in 1997.

I am aware that Andrew Sutton has written to you in support of Brendan McConville, of the work at Buddy Bear and of conductive education.  I wish to add my voice to his, and trust that this will be of use to you in your deliberations.

My daughter, a young woman diagnosed shortly after her birth with spastic quadriplegia, now 25 years old, is currently participating in a programme that includes age-appropriate conductive education which will lead her to living independently with two friends in a home of their choice.  Her mother and I attribute her achievement almost entirely to conductive education, of which she has had the benefit since the age of 6 years.

Why conductive education? The reason for me is simple and can be expressed through four straightforward questions that I invite you to ask of yourselves and your colleagues in the Assembly and in the Ministry of Education. Please see the enclosed sheet. My answers apply to England and Wales.

There is much more that I could say about conductive education, about learning and about the education of those with motor disabilities. I would be happy to do so if requested.

Yours sincerely

Norman Perrin
Chief Executive, Paces Sheffield.
Churchill Fellow 2007

-------------------------------------------------------------------------------

The following was sent as a separate Table, which I do not know how to replicate here. (It looks more impressive as a Table, with the column of "No"s against State Schools and the "Yes's" beside Conductive Education).  The information was as follows.

Title: PERSPECTIVES ON THE EDUCATION OF CHILDREN WITH CEREBRAL PALSY AS BETWEEN THE STATE SYSTEM IN ENGLAND AND CONDUCTIVE EDUCATION

Question 1.  Initial Teacher Training

Do trainee teachers who would work with children with disabilities such as cerebral palsy in mainstream English schools undergo specific training in order to qualify as teachers of children with disabilities and specifically cerebral palsy?
State schools: No   
Conductive Education: Yes

Question 2.  Pedagogy
Is there recognition of the need for specific pedagogies for specific needs?
State schools: No   
Conductive Education: Yes

Question 3. Curriculum
Is there recognition of the appropriateness of specific curricula for specific needs?
State schools: No
Conductive Education: Yes

Question 4. Understanding Disability
Are teachers in training or qualified teachers required to have any understanding of the nature of the disability  (such as cerebral palsy) of the pupils they might be teaching?
State schools: No
Conductive Education: Yes

April 30, 2008

On being a parent

Sometimes, words I read touch me so closely, remind me how far we have to go in supporting parents of children with disabilities, and demonstrate how parents are the only ones who can ever really help other parents, that I have no words of my own. You must just read for yourself.

Here is an extract to give you an idea of it:

"The other parents sat around in the front yard and had a few beers. The kids ran off in different directions, to play on their bikes and scooters and cars, to climb on the jungle gym. You know, the usual. Some moms helped their kids get a plate of food, then helped themselves while their kids sat and ate.

That's what I want. I want to be one of those moms. I want to sit on the bench at the park chatting with the neighborhood moms while my kids run and climb and slide. I want to hand them a hot dog or an ice cream cone to eat while I finish my plate. I want to help the women preparing food and cleaning up in the kitchen while the kids play in the other room. I miss those simple things."

There are 29 comments added to this posting as I write here.

April 29, 2008

Does anyone at Supporta know what best practice is?

As well as this blog, I keep another occasional blog recording our tribulations with our daughter's care agency. Other parents, I fear, will recognise a story of unprofessionalism and lack of integrity in a care organisation that is only exceptional in that it is unexceptional.

I have decided to republish the posting on this blog, to give it the widest currency. Tonight, carers arrived with a clearly prepared speech that assisting our daughter to make transitions from chair to wheelchair to stair lift to toilet was an illegal manouevre. The carers clearly also had no alternative plan by which her care should be delivered.  We instructed them to leave and dealt ourselves with our daughter's very great distress. We do not ourselves expect to get to sleep very early. There can be no starker contrast between the practices of conductive education and the often out-dated thinking of 'moving and handling' so-called experts in care companies.

The republished posting follows.

----------------------------------------

An All Party Group of MPs on Dementia has called for training in dementia for all staff working with clients with dementia in care homes.

The point that interests me is "training":  firstly, that up to now training has not been thought necessary and secondly that, at last, a group of MPs have recognised the need. Speaking on "You and Yours" on Monday 28th April, Jeremy Wright MP, the Chair of the Group pointed out that currently the only training that was mandatory on companies employing staff in care homes was for fire regulations and for moving and handling. He emphasised the importance the All Party Group placed on training in dementia for such staff.

Let us assume that those staff delivering care to clients with dementia living in their own homes should also be trained.  Let us also assume that training should not just apply in the case of clients with dementia but also to those serving clients with other conditions, such as cerebral palsy, say.  Let us further assume that, as the All Part Group of MPs seem to have done, that it is in fact not possible to deliver appropriate care without such training.

Let us finally assume that as part of the training in cerebral palsy for those who work with clients with cerebral palsy, that training will bring about an understanding of the importance of maintaining and, if possible, enhancing, independent mobility (a) as essential for the lifelong mental and emotional, as much as the physical, wellbeing of the client and (b) that anything less, anything which promotes or tends to promote, a reduction in physical mobility, or unnecessary dependence on carers, is a form of abuse of the client and of the client's human right to a full life.

Now consider this.
1. Carers who arrive consistently and persistently 10 minutes late in the morning, so that the 30 minutes allocated to our daughter is reduced to 20 minutes, for showering, dressing and coming downstairs on the stairlift - leaving no time for careful and managed transitions from chair to lift, lift to chair; no time for our daughter to properly participate herself positively in managing her independent mobility skills;
2. Carers who now find that "assisted mobility" has become something more akin to "lifting". 

But do not leap immediately to blame the carers. Ask yourself what the care company, Supporta, should do. Ask yourself the quality assurance question: How does the care company know with certainty that they are delivering a quality assured service appropriate to the client's needs? The answer, of course, is that they don't.   Not only do they not train their staff in working with clients with cerebral palsy (for whom patient time is often essential to success); not only do they not provide the specialist training for their staff in the assisted mobility with people with cerebral palsy, they actually have no way of knowing that their staff are cutting by a third (cutting 10 minutes off 30 minutes) the time allocated for an appropriate service. Of course, one might say "Why would they bother to find out?" when they get paid under their contract with the Council anyway.

And then what happens?
"
Moving and handling", suddenly becomes an issue for somebody.

What does Supporta do?
1. Shortly after 9.30pm last Friday night, we ring  Mission Control at Supporta to enquire when to expect carers who should have arrived  by 9.00pm or Mission Control should have called us by 9.15pm to advise us of the delay.  Justina, for she is the voice of Mission Control, says "While you are on the phone ...." a moving and handling expert will be coming on Tuesday morning to assess the situation. My wife points out that this cannot happen (a) because he is male and a stranger, and cannot be permitted to see my daughter undressed, getting dressed and use handrails to assist the process and (b) because his visit needs to be part of a proper process shared with the client (our daughter) of which she has been properly informed and been able to contribute.
2. On Monday midday, the moving and handling expert himself rings and identifies himself as from the Primary Care Trust.  A long conversation (20 minutes and maybe more) ensues in which he says that he is calling because Justina (Supporta Mission Control) has said that 'we did not understand' what we had to do. (Try to imagine how condescending and patronising we find this simple statement). The M&H expert is informed that (a) he should first arrange to visit the programme our daughter attends during the daytime where he can observe positive practice in what our daughter can do, before making an appointment to see her at home; (b) he might consider doing so on a weekend morning rather than a week day morning, when there is less pressure on her time to be up and out. (He says he does not work weekends; the carers do and we do with our daughter, so we rather think that is his problem and not the client's problem.) And (c) that we cannot permit a male and a stranger to undertake this assessment. Somewhere in this conversation the M&H expert, who is somewhat ambiguous when it comes to his point of view, when, of course, his point of view should be entirely neutral and independent, says some thing to the effect that if we refuse a moving and handling assessment the care company, Supporta, might withdraw care services altogether. It is difficult to see how this comment might reasonably arise in a professional conversation, based in good practice, a conversation simply about how an appointment might be arranged, taking into account the needs and wishes of the client as well as of the M&H expert and Supporta. (We did not at that moment know what his relationship is with Supporta, nor precisely who the M&H expert is employed by, nor the process by which he is involved, whether it is a statutory or voluntary/contractual process. ie in a very ordinary sense, we do not know, at the time the conversation takes place, who this man is, who is requiring and expecting to visit our daughter the next morning.)
3. Monday afternoon, about 4.00pm, Supporta's own moving and handling expert, Rosie, telephones. She asks if she can "... just pop round ...." in the morning when the carers attend and the PCT M&H expert will be doing his assessment. She is told that this assessment is being re-arranged with the PCT M&H expert. She refuses to accept this statement and her manner on the telephone is harrassing and threatening.  We immediately seek to report these phone calls to our daughter's social worker but she is off work.
4. On Tuesday, the Social Services duty officer leaves messages and we finally get to speak to her about 5.00pm. She kindly comes out of a meeting to do so.
We point out that this travesty of process has completely by-passed the client, not taken into account her needs or wishes nor her interests but has been driven solely by and for Supporta; that this is wholly and totally unacceptable in a 'Valuing People' service; that Sheffield Social Services should not tolerate such poor practice from a contracted organisation. It then transpires that someone, Chris Webster of the family that formally owned Hallam Health Care and who stayed on as manager after it was taken over by Supporta at the turn of the year and who never came back to us on any of the issues we were discussing with HHC last autumn and who knows that HHC/Supporta owes our daughter £200 for a pair of glasses broken by one of the carers at least as long ago as last November, that Chris Webster, had rung Social Services to complain that we had "cancelled an appointment".  Isn't "an appointment" a mutually agreed thing not one imposed?  And it turned out that the moving and handling issue had been raised by Supporta with Social Services last week, without any thought to when and how the client was to be involved or her wishes and needs taken into account; and it turned out the PCT M&H expert was involved because a "referral" had been made by Supporta, without the client's wishes  etc etc again, and without the client being informed.

Has anybody at Supporta read  "Valuing People" never mind acted on it? Has anybody at Supporta read "A Good Life", Sheffield's draft strategy for people with learning disabilities? Does anybody at Supporta have any understanding of what "Valuing People" and "A Good Life"mean for best practice in their company?

Does anyone at Supporta seriously think that a ""While you are on the phone ..." at 9.30pm on a Friday night and a 'can I just pop in ... phone call on Monday, that gets unpleasant when the caller does not get the simple compliance she obviously expects, are exemplar ways in which to go about best practice?  Will Sheffield Social Services remind them of their duty to their clients under the law and under their contract?

I told the Social Services Duty Officer that this would be posted on the internet. This is it.

An orthofunctional organisation?

On Saturday, I found myself in much the same situation as Jane, "Student Conductor" blogger at Birmingham, pondering answers to the question "what is conductive education".

I was attending the spring meeting of the East Pennine Association of Churchill Fellows at Leeming, an association of which I am member as a result of being awarded a Travel fellowship by the Winston Churchill Memorial Trust. (You can register now to receive information when the Trust opens for applications for the 2009 travel grants on 2nd June.) 

As it was the first meeting I had attended since completing the Fellowship, people naturally asked about it .... which led inevitably to conductive education and the "What is .... ? question."

Of course, it's a question I have now been asked many times (though I do not have a rehearsed and simple answer).  Earlier on Saturday I had read Jane's blog and added a comment, hopefully encouraging. I pointed her to an article by Dr Hari "Conductive Education. Occasional Papers 2. Orthofunction - A conceptual analysis."

I wrote: "In my own mind, I fall back on my version of something Dr Hari wrote. It's a bit of a polysyllabic mouthful but it keeps my head on the right lines: 'Conductive education is about enhancing the quality of intention to achieve'. You can peel that apart, onion-like, layer upon layer of meaning."

What Dr Hari actually wrote was: " ....conductive education enables individuals to build up a new quality of life and a new quality of intention to achieve higher levels of co-ordination and some increase in coherence and power .... For the everyday course of life this means that the individual is able to establish aims (intentions, to retain them, to monitor progress towards them, to resist failure and to overcome obstacles to their achievement."

Since Saturday, this last bit put me in mind of a thought my colleague, Karen Hague, once asked: was it possible for management to be conductive? I recall we spent some time pondering this. Dr Hari is writing about the individual and orthofunction: "establish aims ....  retain them .... monitor progress .... resist failure .... overcome obstacles .... achievement" - a near perfect description of how to carry out strategic planning for an organisation.  Which suggests that organisations, as well as individuals, can be orthofunctional.  With the flipside that if organisations can be orthofunctional, they can just as well be dysfunctional - all parts pulling in different directions.  I wonder how far Paces is an orthofunctional organisation?

 

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