Supporting families supporting disabled children into independent adulthood as active citizens, especially those with cerebral palsy and particularly through Conductive Education.
The essence of 'care' is the relationship between the person cared for and the carer.
The terms need to be used with a strong note of caution. Today,
'care-giving' carries with it a history that is suffused with notions
of dependency and "otherness". Where the recipient is also disabled,
that notion is reinforced with cultural views of the meaning of
disability. The prevalence of the notions of dependency and "otherness"
is simply illustrated by the carer who, when challenged that she had
arrived early to help our perfectly healthy 25-year old daughter to
bed: "Would you like to be put to bed at 8.00pm?", replied "No. But I'm
not disabled". In the context of public services founded in an ethos of
paternalism such a response is unsurprising. Increasingly, however,
such notions are unsupportable and the delivery of public services must
change, partly in response to service users demands for control and
individuality of service, partly led by national policy-decisions
based, for instance, on human rights agendas, which all three major
parties largely espouse. New understandings of "care", new delivery of
"care" needs all involved to throughly understand the primacy of the
individual's right to independence and control.
Care is a personal matter. It is not a function. The 'care plan'
sets out the tasks that the carers need to undertake. It is a
mechanistic document setting out tasks. It is functional. "Care",
properly understood, is more than the care plan. True "Care", I
suggest, exists in the relationship between the givers and receivers.
It follows that it is possible to rigorously complete all the tasks on the care plan without "care".
Yesterday evening, in the 19 days since our daughter's care was
reinstated, she has had 21 different carers. Leave aside that she was
promised a team of 8. Leave aside that, by simple arithmetic, it could
have been even worse; that in 19 days, with two visits each day by two
carers, she might have had 76 different carers (less the two nights she
was in respite, giving a maximum of 68).
The fact of the matter is that 21 different carers in 19 days simply
cannot engage in the personal relationship which is the essence of
"care". Whatever it is they are doing, however we describe what they
are doing, the word we are looking for is not "care". Whatever the
'care company' thinks it is doing, whatever it's managers are managing,
it is not "care".
So, revising the question above that we asked of the carer and
addressing it to all the care company managers and social service
delivery managers and local council contracts managers and Quality
assurance managers: "Would you like 21 different people in 19 days,
dressing and undressing you; washing you and attending to your personal hygiene?" And
when you think of your answer to that, do not dare even to think of
answering, "No. But I'm not disabled."
And lest we forget the parents in this, whose home this is, let's
ask them too: "Would you like 21 different strangers in 19 days trampled through
your home, morning and evening, every day?"
---------------------
In supposing that "care" is more than the functional completion of tasks, I am reminded of postings by Andrew Sutton about "love" and by Susie Mallett about "der seele" (the 'soul') in conductive education. On this occasion, my apologies for not hunting down links to their specific postings.
The personal story in the Guardian ("I half hoped that I might miscarry") of the Mum of a baby boy with Down's Syndrome, well illustrates the first trauma and guilt, followed by the later emotional contortions that some parents go through in having and loving a child with a disability. I say "some" quite deliberately, partly to leave the number unquantified and partly so that should your experience as a parent be different, well, that's OK, too.
A number of thoughts struck me. For instance, whilst obviously this is a mother's account of her own emotional journey, the father's emotional journey is almost entirely absent. "He" or "we" in this account are almost entirely extensions of "I". Most remarkable is the passage, "I told my husband that I wanted Paddy adopted and that we'd have to go
and live in New Zealand so that no one would know and condemn us. He
agreed as he endlessly stroked my hair and told me all would be well." Do not misunderstand me. I do not criticise Mum here at all. Partners give such emotional supports to each other. But over the years, often enough, and again on reading this, I have thought that Dads have feelings too and, too often, Dads feelings are neglected in such institutional supports as are available (the clinics, the professionals making home visits, the letters addressed only to Mum). I have wondered if there should be some formal, local level, system offering supports to Dads?
Another thought that struck me was the emotional similarity to that piece I first read many years ago, "Welcome to Holland", by Emily Perl Kingsley, the Sesame Street writer, who had a son with Down's Syndrome. My point is the emotional contortion, almost the necessity of the contortion, that can set apart the experience of parenting for the parent of a child with a disability from that of other parents.
But my main thought, as a parent, a Dad, for now 25 years, of daughter "I love to bits", just as I love all my children and grandchildren, is that, for some (perhaps for many or even for most parents with a disabled child), it doesn't get any better. Indeed, when our children reach school leaving age, adult services are even worse. How can it be otherwise when, for instance, the Government doesn't even know how many adults with learning disabilities there are who need adult services, be they for health or for independent living or whatever, that most people take for granted?
Annie Rey, the mother and writer of the Guardian story ends with a sentiment we can all share: "I truly believe that if my precious boy did not exist, our world, and probably the world at large, would be a poorer place." What bothers me most, always has done, and probably always will, is what will happen to my daughter when her mother and I can no longer fight her corner? What happens to her when we "drop off the tree"?
It's a long leap of reasoning from this point in this blog posting across the gap of years back to the point why Paces and then Paces Campus were set up. Nevertheless, it is a direct leap. It was to put parents at the heart of public services; to be an exemplar of transformation in those same public services; in our case, of the benefits of conductive education. As I write this, I am asking myself - I will ask our Trustees - Have we ourselves still not done enough to put parents at the heart of what Paces does?
" 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?"
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.
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.
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.
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?
Trevor and Charmaine White have a campaigning weblog with the 'headline' mission statement: "To find a cure for Mitochondrial Disease and Save Our Son". Brave people whom we can only wish every success. Let's hope they avoid the burn out that afflicts so many parents who set out on similar courses. I have lost count of the number of times over the past years that I have wondered whether, if I had known what I know now, I would have ever have begun the journey. (And that is no counsel of despair or defeatism. Just reality. "KBO" was apparently how Churchill signed off his transatlantic phone calls with Roosevelt. "Keep buggering on.")
Trevor and Charmaine also have a website, which is just as well. There are many disabilities and conditions that I know nothing whatsoever about. Mitochondrial disease is one.
Apart from yet another set of brave parents battling "the system", the posting on their blog caught my attention in other ways too:
- Trevor and Charmaine's enthusiasm for conductive education, and for an unexpected condition; - their understanding that CE is a school-based system of learning - near enough, I reckon; especially compared with those who still use the language of therapy; - that the mainstreaming funding for the CE programme is under threat sounds all-too-familiar;
But two thoughts, especially, struck me: the first, here is another powerful parents' blog, like "Terrible Palsy"; where are the blogs from UK parents setting out their battles, for instance, for conductive education for their children? I'd be delighted to learn of any. The second, how many CE programmes are there across the world, with mainstream or Government funding. It might be interesting (and politically useful in campaigns) to have a list. How might we go about compiling such a list?
I'd like to end this post with what drives parents, time after time - Hope.
Trevor, Charmaine - my wife and I said the same 20 years ago, when we first encountered conductive education, the same Hope. I have only this to tell you: it's not about the walking, it's about "the new little boy" Jack is, about his "learning", about doing "things for himself". From one parent campaigner to two others, my very best wishes to you both - and to Jack too.
Dear Johann Hari Somewhere at work I have a large box of floppy discs. You may remember the uproar when Apple removed floppy disc drives from their computers. How would we cope? Who has floppy discs now? “Thinking different” can be difficult.
Set aside Keith O’Neill’s prejudicial use of quotation marks around the word “choice” and his pejorative use of the adjective “Thatcherite”. In setting out his categorical opposition to choice in education, he asserts “What the Thatcherite parties fail to realise is that most parents are not particularly bothered about choice. They just want to know that their nearest community school is of a good standard.”
We might ask for Keith O’Neill to produce his evidence on which he makes these statements about parents. However, my greater concern is with the confusion in his thinking. Either, Keith O’Neill’s hypothetical parents (given a choice) are expressing a choice, in favour of a good local school, in which case, the wishes of parents, in asserting and exercising a right to such a choice, should be taken into account in arrangements for schools locally and nationally or his hypothetical parents are not expressing a choice, “not particularly bothered” as Keith O’Neill says.
I grew up in a working class family and within a working class community for whom the education and schooling of children, far from being a matter on which people were “not particularly bothered” was, in fact, of great importance to them, especially at transitions: this primary school or that; when it came to the 11+, which schools to opt for and in which order; were there other options – the Catholic school, perhaps; and, for some, the only option was the local secondary modern. They understood the importance of education, and of the importance of exercising what little choice the State and the local education authority afforded them. For Keith O’Neill to deny parents a role in this process (“they just want to know that their nearest community school is of a good standard”) or to assert that they are “not particularly bothered” is paternalistic; indeed, it is to continue the paternalism on which much of the late 19th and 20th century achievement of public services has been erected.
When, in your article, you write, apparently approvingly, of “the school lottery system introduced in Brighton”, a system that removes from most parents any vestige of interest in the choice of education or of school or of schooling, you ally your argument to paternalism. For the fact of the matter is that somebody always decides; somebody always makes choices or decides what the choices should be, or should not be, for others. The important question is not whether choice is or is not a good thing, but who decides.
Consider for a moment, Montessori Schools, or Steiner Schools. Would you do away with such schools, on the Brighton model, to preclude choice? Or would you allow such schools, knowing that only parents who can afford the fees will have the choice? For such schools are not just different buildings, but different and alternative views of childhood, upbringing, learning, curriculum, pedagogy and the training of teachers who work in them; alternatives not available in the maintained sector. Consider the non-maintained special schools (NMSS) and the larger category of independent schools for children with special educational needs. Among their number are schools that offer an education as radically different from local authority schools as do the Montessori and Steiner schools. Should such schools not exist, in your view? Should parents not be allowed (and who is to decide?) a choice of such schools? On the No 10 web site there is currently an ePetition from a Barnsley parent regarding the education of her child with special educational needs. She would have her child attend Paces School in Sheffield. Barnsley LEA thinks otherwise. Who decides? Perhaps it would be easier if the parents simply had no choice - simply achieved if Paces School and schools like it, old or new foundations, should not be allowed to exist, or if all school places were only arranged by ballot, or if all children were compelled to attend their local school. Who decides?
Paces School was founded by parents; parents who were not satisfied with local authority provision; parents who found an alternative in Conductive Education. You dismiss, I think rather too readily, Swedish experiments (there are similar experiments in America), “where parents can set up their own schools and receive funding from the State”. Paces School is seeking NMSS status, which will entitle it to some State funding. Another option would be Foundation Special School status, which would bring the school more closely within the local education structure, funded centrally from the State. For the time being, Paces School offers an alternative, provided parents can pay the fees or, as most do, battle heroically with the local authority.
There are always alternatives, in education and schooling as in Life generally. The “nearest community school … of a good standard” is not always, or only, the best option. Alternatives present options and choices. Introducing alternatives, as Apple found, and the rest of world of computer manufacturers and users eventually discovered, can be managed, despite the difficulties and fears, opening up new possibilities for all. At issue is not “choice”, whether or not in quotation marks, whether or not a simple issue of a ‘swelling gap between Labour and the Tories”. The real question for the 21st century is “Who decides?” In the historic struggle in European societies between the State and the Individual, between the Sheriff of Nottingham and Robin Hood to put it humorously, I’m for the greater devolution of power to individuals and communities, in general and in particular in the education of children.
So my preference leans towards more power to parents in the education of our children. In particular, my preference is for more power to “working class” parents and finding ways of supporting them. As long ago as 1948, the United Nations published its “Universal Declaration of Human Rights”, Article 26. Paragraph 3 of which reads: “Parents have a prior right to choose the kind of education that shall be given to their children.” It is a principle against which I have yet to read a coherent argument.
Yours sincerely
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I had an email in response from Johann Hari, thanking me for the email, but no other comment.
Two cases. First case. Dr Bethan Marshall, writing in today's Independent, argues that 'punctuation does not matter'. "It's the meaning that matters," she concludes. She makes much of her article starting with the one word sentence, "Punctuation", reminding the reader of Dickens magnificent verbless opening to Bleak House, the first paragraph of which begins: "London. Michaelmas term lately over and the Lord Chancellor sitting in Lincoln's Inn Hall" and the second that famously begins, "Fog everywhere." I likewise began this piece with two sentences each comprising a single phrase. Deliberately. And that's the irony. Deliberation implies control. Control implies a learned craft. Meaning is conveyed, in part, by control of punctuation. And Dr Bethan Marshall's article exhibits every evidence of sophisticated control of punctuation for her purposes of style and meaning. And just where did she learn that control?
I admit guilt, here. As one who started teaching English after the so-called 'summer of love' and "Ho! Ho! Ho Chi Min!" in Grosvenor Square, I embraced enthusiastically the notion that teaching English was about 'expression' and 'poetry'; that grammar and spelling and punctuation mattered not a jot. But that was forty years, a life-time ago. Since when the Soviet Union has imploded. And leading hippies long since moved into corporate management. So what is shocking is that Dr Bethan Marshall is today a lecturer at one of the country's leading universities, King's College, London (that's "King's" with the apostrophe. of course, before the final 's' and not after it, which would have a wholly different meaning). More yet, she is a lecturer in English Education. If punctuation does not matter, then it's place in education, in schooling, in the curriculum does not matter, or matters less (less than previously or less than 'expression' or 'meaning'). How then are our children, our pupils, to learn to control the written language, some as successfully as Dr Bethan Marshall?
Second case. An LEA SEN officer, defending, to a parent, the naming on a child's statement of special educational needs, of an LEA school rather than the parent's preferred conductive education non-maintained special school, asserted that the 'system' in this country was first to recommend the placement of children in LEA schools.
This, I do not believe to be so. The law, as I as a lay person understand it, requires firstly, that the needs of each individual child, for whom a statement of special educational needs might be appropriate, be individually assessed; and that, secondly, the means of meeting those needs by specified. Only then, should the question of the naming of the appropriate school be considered. (And, so strongly is the emphasis on meeting the child's individual needs, that in undertaking this process, an LEA cannot refer to nor apply general "policies".)
In that regard, the law further requires LEAs to provide parents with a list of all potentially appropriate schools, the list including maintained, non-maintained and independent schools; that the LEA should have regard to the parents' choice of school, provided, among other considerations, that the parents' choice, if not of an LEA school, should not be an excessive use of public funds.
Nothing in this process, which has been legislated for over the past 10 or so years, should leave any LEA officer asserting (as may once upon a time have been the case) that the LEA is required to place children first at maintained schools. The Law now directs LEAs to meet the child's needs and consider parental choice, if such can be achieved without draining the public purse.
Two cases. What is the connection between them? These are educated people. More than that, they are people with responsibility for the education and learning and upbringing of others. And they both have an opinion - for in both cases that is all it can be - that is wilfully wrong-headed, to put it no more strongly.
What is to be done? No doubt Independent readers will write to the Editor and leave comments on the newspaper's website. How the SEN officer might be challenged will be a different story. Partly because the former is 'on the record' and the latter 'off the record', just a comment in a phone conversation that can be denied. Parent's word against an SEN officer's word. But it is worrying, nonetheless.
