Supporting families supporting disabled children into independent adulthood as active citizens, especially those with cerebral palsy and particularly through Conductive Education.
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.
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.
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.
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".
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."
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
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.
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.
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?
Let me say right from the outset that we will participate; that we will do so to the best of our ability, recognising the hard work of others that has created our opportunity to do so; hard work that has fallen, we strongly suspect, on the shoulders of just one Council officer; wanting to support her as well as wanting to take hold of any opportunity open to us as parents that will help lay the path toward independent living for our 25-year old daughter; knowing that with all else, our age being not the least of it, never mind both being working parents, we ourselves need help to help her, and so will take this help; and knowing that she, to achieve independence, needs to look to other people than ourselves for the supports she needs. So tonight, albeit a day late, we as her parents will complete the questionnaire, due back by today, that she, being able neither to read nor write, cannot - or we will complete it and send it in the morning, if tonight, while she is at a disco, we are not just too tired. Or we cannot find all her financial information, needed in answer to the first questions; and, yes, we know that we should have these neatly filed away but I do not know about your life but our lives ceased to be "neatly filed" years ago; or perhaps we never managed to neatly file our lives anyway, as if managing another person's life as well as being her parents were not enough. But we'll try, tonight, to give filling in their questionnaire a try. Her Mum has just this minute found her Independent Living Fund financial details, which is a start. So please be in no doubt that we will do our best.
Having said that, we do not know why we are doing this, this "Planning Live" (at the link, look down the page); except it's "the only game in town" that might, perhaps and in the end, lead to our daughter finally being able to live in a place of her own. After the first of the "Planning Live" sessions, with two more to come, our daughter told the carers who came to help her to bed that she was going to live with her friend K. We three together share that goal. We do not know if those who plan and organise the meetings share the same goal. In other words, we do not know if what they want from the "Planning Live" events is the same as what we want. They are testing a process for certain; for certain we are willing guinea pigs (we will try to be the best guinea pigs we can, so do not read into my comments, reluctance or criticism), so to that extent, their purpose is different; indeed, to test the process, it might be said, is their primary purpose and, as a result, if it is successful, to implement the process across the city, for others; if not, well, back to the drawing board, to see what can be improved in the process and how. In a sense, as with all experiments (tests, trials, pilots) 'failure' is a sort of success. For us, for us as parents and for our daughter, failure is just that, failure. Because for us, success is her moving into a place of her own or, at least, taking a significant step towards that thanks to being involved in "Planning Live", whereas success for those managing the event is what comes next in terms of process. No doubt, for instance, for the consultancy who developed Planning Live, the adoption of the "Planning Live" package for others, and therefore further profitable business, will be a success. And do not think I am one of those who regard profit or enterprise as somehow ignoble, to be sneered at. It is simply their goal, as a business, or one of their goals, but not our goal, as a family, that is all.
And so we play by their rules; They being the City Council and the Consultancy: what is to be, and when, and where, and how we are to relate to the events, and what the questions are and who decided what the questions should be. Who decided. That seems to me the significant difference. Who decides whose questions get answered. In "Rosencrantz and Gildernstern Are Dead" by Tom Stoppard, the one raises with the other - it does not matter which, they are as indistinguishable in Stoppard as in Shakespeare - whether, on their journey to Elsinore, and thence to England to their fated death, they could have said 'No', could have refused the King's invitation, knowing that the journey, for them, could have no good end. They are just 'bit part players' in someone else's play. Someone else's play. Some other's rules - or "others' rules" if you enjoy the distinction of the apostrophe. Just so, are we: 'bit part players' in a drama of someone else's devising, making our way to our goal, hoping, unlike what befell R & G, for a happy ending. So we join in with a City Council imperative, laid on it by Government policy, to move towards a system of individual budgets - to be distinguished from "personal budgets", getting right the language is vital; join in with a Consultancy that has a pre-devised package to deliver in a pre-devised way, asking pre-devised questions that have been tested out on previous participants; that requires our attendance at a certain place, on a certain date, at a certain time (and I would say thank-you for a very tasty lunch) - their rules, a drama scripted by them. The pinnacle of the English public services, of public service in England - and maybe the UK and Northern Ireland - as it developed in the nineteenth and twentieth centuries was one of service based on paternalism, which is to say, to use a derisive twenty-first century phrase that fails to recognise the achievement, "Nanny knows best".
How can it be otherwise? Can you imagine a system of public service that begins with "How can I help you?" and continues through such practical questions as When? and Where? and How? and - crucially - by By Whom?
Actually, you do not need to stress your imagination. In California they do do things differently. Let's first go to Santa Clara, to "Parents Helping Parents" (Parents helping parents - there's novelty). For PHP the focus, the locus, the fulcrum is the parent. "Parents Helping Parents (PHP) provides lifetime guidance, supports and services to families of children with any special need and
the professionals who serve them." Take a look at their video, but before you do, let me just say to look out for the Mum who says of PHP: "They asked how they could help." Really that's all you need to know, to know that PHP is different, sees things differently, works differently, from anything we have here in Sheffield and, probably, where you live too. Take a look.
I'd like you to read a little more about PHP in Santa Clara, to see what a different public services delivery model it is part of:
"As a parent-directed, community-based organization,
PHP's mission was developed in response to the need in our community
for information, training, and support services for families who have
children with special needs and the professionals who serve them.
PHP receives federal funding as aParent Training and Information Centerthat serves families of children and young adults from birth to age 22
with all disabilities: physical, cognitive, emotional, and learning.
Our Education Program Specialists help families obtain appropriate
education and services for their children with disabilities; work to
improve education results for all children; train and inform parents
and professionals on a variety of topics; resolve problems between
families and schools or other agencies; and connect children with
disabilities to community resources that address their needs.
Additionally, PHP is a Family Empowerment Center (FEC)
that provides information, resources, technical assistance, and systems
change advocacy for a statewide network of local FEC's who provide
family education, empowerment, and parent-professional collaborative
activities for families of children with disabilities ages 3-22 years
old.
PHP is also the Family Resource Center for Santa
Clara County's Early Start Program. Families of infants and toddlers,
birth to 36 months at risk of or with developmental delays and
disabilities, can receive parent-to-parent support from Early Start
Family Resource Centers and Networks. Family Resource Centers/Networks
(FRC/Ns) actively collaborate with local regional centers and education
agencies and help many parents, families and children access
information about early intervention services. A listing of the Family
Resource Centers is included in theCentral Directory of Early Intervention Resources (PDF)."
Now let's go to San Andreas, to the Regional Center: "San
Andreas Regional Center is a community-based, private nonprofit
corporation that is funded by the State of California to serve people
with developmental disabilities as required by the Lanterman
Developmental Disabilities Act. The Lanterman Act is part of California
law that sets out the rights and responsibilities of persons with
developmental disabilities. San Andreas is one of 21 Regional Centers
throughout California serving individuals and their families who reside
within Monterey, San Benito, Santa Clara, and Santa Cruz Counties".
And the Lanterman Act? Section 4620 of the Lanterman Act states "The Legislature finds that the services provided to
individuals and their families by regional centers is of such a
special and unique nature that it cannot be satisfactorily
provided by state agencies. Therefore, private nonprofit
community agencies shall be utilized by the state for the purpose
of operating regional centers."
Let's hear that again: ".... services .... of such a special and unique nature ..... cannot be satisfactorily provided by state agencies .... ".
In short, in California, the State funds the non-profit Regional Centers which fund non-profit organisations like Parents Helping Parents. And the result? As the Mum in the video says: "They asked how they could help.
When, above, a moment ago, I invited you to imagine a different system, one that began with the question, "How can I help you?", did you think I was simply being absurd?
An informative table comparing provision in 20 countries for the training of teachers of children with special educational needs can be downloaded from the INCA website. The countries in the table are listed in blocks: ‘UK and Ireland’ (5), ‘Europe’ (8) and ‘the rest of the world’ (7).
Of the 20 countries, 9 offer "specialist initial teacher training": Germany, Spain, Hungary, Australia, Canada, Japan, Korea, Singapore, USA.
18 of the 20 countries are said to offer "post qualification specialisation", the exceptions being Hungary and Spain.
14 of the 20 offer some element of "Special needs education [as] part of initial teacher training".
2 of the 20 rely solely on "post qualification specialisation" as the only means of training teachers of pupils with special educational needs.
In addition to the Table, for each country it is possible to discover, by means of a simple search facility, a wealth of information about arrangements for the training of teachers of children with special educational needs. For instance, I copy below an extract from the information on England.
As I read this extract, I am struck by (i) the intellectual and academic poverty of the "basic knowledge and skills in
the field of special educational needs" required of all newly qualified teachers; (ii) the question as to whether there is any such "field" as that of "special educational needs" and (iii) a curiosity as to the reason why teachers of children with sensory impairments - and not other disabilities - are required to obtain a "recognised specialist qualification within
three years of appointment" as a Mandatory Qualification.
Is it fair and reasonable to conclude from this that when newly qualified teachers in England (and presumably the rest of the UK and Northern Ireland) begin their first day of teaching in a special school for children with cerebral palsy, they are largely bereft of the slightest clue what they are doing and why?
As I read this extract, I am also reminded that Conductors have undertaken 3-4 years of specialist initial teacher training to work with children with motor disorders before setting a first step in a classroom in earnest.
In The Times today is the story ("How could my boy be racist") of a boy with Down's Syndrome being charged by the police with assault and racial abuse after an incident at a college between him and an Asian girl also with special needs. Remarkably, The Times allocates nearly two whole pages (minus a very large photograph) to the story. The parents comment on the lack of training and of specialist knowledge of children with Down's Syndrome. This is supported by David Congdon, Head of Campaigns and Policy at Mencap: ".... it is surprising and concerning that more attention has not been given to the support needed by suspects with learning disabilities" and "Better training about the needs of people with a learning disability would equip police officers when dealing with suspects."
I would stress that my point here is not to criticise the police generally nor those in this case specifically. Indeed, the parents of the boy are reported as saying that the officers who first interviewed the boy "were very pleasant".
But in the light of this report and the extract quoted from the INCA research, I cannot help but wonder: why would a society that decides against the initial training of specialist teachers to work with pupils with special needs regard as a proper, effective and efficient allocation of scarce resources to the specialist training of police officers? In a similar way, I once asked my daughters home carers what they new about cerebral palsy. I'll leave you to guess the answer.
-------------------------------------------------------------------------------------- Extract from the 'England' section of the INCA database:
There is no longer any initial teacher training (ITT) focusing on special educational needs as
a specialist subject. All initial teacher training courses in England
must provide all student teachers with basic knowledge and skills in
the field of special educational needs (SEN). Requirements have been introduced to ensure that all newly qualified teachers are:
Familiar with the "Code of Practice on the Identification and Assessment of Special Educational Needs" (see section 1.2.1.)
Able to identify students with SEN in their classes and know where to obtain help to give positive and targeted support.
SEN teachers are usually classroom teachers with several years of teaching experience.
Specialist SEN training
In addition to Qualified Teacher Status (QTS), teachers of classes of students with hearing impairment (HI), visual impairment (VI) or multi-sensory impairment (MSI)
must, in addition, obtain a recognised specialist qualification within
three years of appointment. This qualification must be approved by the
Secretary of State as a so-called Mandatory Qualification (MQ). Institutions are approved to award MQs.
