Paces

She's leaving home: cuts, mortality and independent living

Some subjects are just not easy to write about.

One's mortality, for instance. 

How many times over the years have I heard parents of severely disabled children express their worry about what will happen to their child once they themselves 'depart this stage"?

I am minded of this by an article in the Irish Independent and the distressing story of a Mum and Dad forced to give up looking after their daughter at home and to put her into residential care because the funding is no longer available for her to be cared for by them at home and attend a day centre each day.

Inevitably, it seems, the Independent journalist blames 'the cuts': "'Idiotic' cutbacks force family to place disabled daughter in care". 

Aside from the obvious question about whether this in the long run will save the Irish Government any money at all, the cost of residential care being what it is, there is something else.

I was 66 when my daughter moved out of the family home and into her own home with two other young women. She was 29.  That was 18 months ago.  She comes home to us every weekend. It has become increasingly obvious to us, her Mum and I, that since then our capacity to care for her full-time had we continued to do so, would have become almost impossible.

Siobhan Powell is 29 years old. Her Mum, Johanne, is 59.

Clearly, the breaking up of the family home on the basis of the cost of transport to a day centre is an absurdity and a cruelty, the sort of which is all too frequent.

But the day is relentlessly coming when the family will have to manage things differently; when Siobhan may have to live elswhere than the family home. It is the same for all of us: Timor mortis conturbat me.

The issue here is not "the cuts", as "foolish" as they are but the apparent lack of any process to manage transition from where the whole family are now to where they will, in due to time, perhaps shortly, need to be. 

Such matters are managed no better in Ireland, it seems, than in the UK.

 

Please, (Sir/Miss as you like), have I reached my potential yet?

Not so long since, I was driving home from Pembrokeshire and up the M42 when I passed a wagon on which was proudly declared that the company that ran it was the largest large vehicle and coach recovery company in the UK.

I remember thinking, for some bizarre reason, I wonder if the guy who runs it has fulfilled his potential?

 

Careers' Master (I went to a boys' grammar school) to bright pupil: You'll go a long way, young man.

Bright pupil to Careers' Master: Yes, I'm going to run the biggest large vehicle and coach recovery company Britain's ever seen.

So there you go. Potential fulfilled.

Actually, I really was at school with a great guy who became, for a couple of years,  Colonel Gaddaffi's personal pilot.  

Careers' Master (all boys school, remember): And what do you want to be when you grow up, young man?

School friend: Sir, I want to be the personal pilot of a mad despotic dictator.

Careers' Master: Well, we'd better qualify as a pilot first, hadn't we?

So, there you go again. Reached his potential didn't he?

As for me, on my school reports, I tended to get stuff, guff, like "Norman isn't working to his potential". "Could do better." (If you think of it "Norman is working to his potential" would sound quite damning, wouldn't it, as if the teacher really wanted to add "... it's just that he's thick.")  

Potential "reached"; potential "fulfilled". Was there ever a politician, trying to say something meaningful about Education, who didn't say they wanted every child to "reach" or "fulfil" his or her potential? (No, I shall resist googling potential in Hansard).

So why this sudden outpouring about "potential"? Because I currently have an active and practical interest in Trustee Board governance. And on twitter about 30 minutes or so ago, I read (Sean Whetstone @schoolgoverning) that 'A Recommended Code of Governance for Schools' had just been published by the Wellcome Trust and thought I'd take a first look. Sounds authoritative.

"The Wellcome Trust believes that good education is impossible without good governance." Just so, I thought. Up-front with a strong statement. Spot on.

"The Recommended Code aims to improve how school governing bodies work, including how they set strategic direction, how they evaluate their own performance, and how they hold the headteacher and other senior school leaders to account for the performance of the school." Just so, I thought, again. Governance in three words: strategy; self-evaluation; accountability. Governance for Dummies: get the book. Or rather "The Recommended Code". So I did. Downloaded it. 

Just at the moment I've been doing some work exploring what performance indicators (cf Ofsted "School Data Dashboard") can mean in an independent non-maintained special school, all of whose pupils have statements of special educational need and which practices conductive education. (As I write that, I'm wondering whether my perspicacious teacher wasn't correct after all about me not working to my potential!).  So I dipped straight into Section C of "The Recommended Code": 

“High-level school performance indicators, encompassing all outcomes for an effective school, on which governors report annually to parents. Linked to the high-level performance information that governors need to monitor the performance indicators.”

And there it was: the very first 'school peformance indicator' that I saw as I scrolled down the downloadable .pdf file:

Do learners at this school achieve to their potential?

I just have no idea what this can mean. Try: "Do teachers at this school teach to their potential?" Is that any more sensible? Does it mean anything more? Does it mean anything? If so, what? 

It just seems so much woolly thinking. Language as fluff. How can anyone know? How will I know when I reach my potential? Perhaps I already have done. Now there's a worrying thought. All down hill from there on? What if my potential peaked when I was 21? 42? 62? Teaching in Kenya in the 1970s? Sharing running the documentary-making company in the 1980s? Having had three great children? Being a loving husband? 

And just how is the Wellcome Trust proposing to measure whether learners achieve to their potential? In special schools, by pupil "Progress against appropriate measures".  Progress against approriate measures is just that, useful and important as it is, a measure not of "potential achieved" but of progress against appropriate measures. 

In what way is "Progress against appropriate measures" any more a measure of learners achieving their potential than it is of teachers teaching to their potential, especially when no-one can possibly yet know the "potential" of either learner or teacher? And when, if "potential" has any meaning whatsoever in education, it can only be something that is not "achieved" or "fulfilled" but "created". And what of the child for whom progress is, maybe only sometimes, agonisingly, almost unmeasurably, slight? Is their progress against appropriate measures evidence of their 'achieving their potential"?

"Potential achieved" is for educational bean-counters. The transaction between teacher and learner in education, in schooling, is transformational or it is nothing.

The real challenge for Trustees and Governors (and how much more so is this true in special education) is how to evidence that the school of which they are custodians and guardians is truly a transformational place for children, young adults and, yes, even the teachers and governors and all the other staff and the parents. 

 

 

 

 

 

 

 

What can we learn from the 9th drop?

Wonderful item on BBC Radio 4 Today. Report on an experiment begun in 1927 to test the viscosity of pitch. (at about 2hrs 18 mins in).

"At room temperature pitch feels solid - even brittle - and can easily be shattered with a blow from a hammer. It's quite amazing then, to see that pitch at room temperature is actually fluid!" 

"In 1927 Professor Parnell heated a sample of pitch and poured it into a glass funnel with a sealed stem. Three years were allowed for the pitch to settle, and in 1930 the sealed stem was cut. From that date on the pitch has slowly dripped out of the funnel - so slowly that now, 80 years later, the ninth drop is only just forming" ... and no-one has ever seen any of the previous 8 drops actually happen.

Today interviewer Justin Webb asked the current professor in charge of the project "What can we learn from the 9th drop?", a question that his fellow presenter John Humphries characterised as one of the most "profound" "meaningful" questions ever asked on the Today programme for which Justin Webb was to be congratulated. Big chuckles in the studio! And in my car, too, as I was listening while driving to work.   

What can we learn from the 9th drop? What it put me in mind of was the person at a child's annual review who, comparing two consecutive annual reports from the child's school, said that he could detect little progress over the year, was not happy with this and would have to report it. Mum and others present took a wholly different view, that despite the child's considerable difficulties progress had been made. 

Two views, seeming almost to be seeing things at different speeds. Yes and no. No-one saw the first eight drops fall. Anyone who cares to access the website can stand by to see the ninth drop. I'm reminded of the philosophic question "If a tree falls in the forest and no one is around to hear it does it make a sound?"

If at the annual review, someone does not recognise the progress of the child, does it mean the child has made no progress?

The onus, of course, is on us in conductive education to find ways to describe and evidence that progress. Even if we all have to wait to discover what we can learn from the ninth drop. 

A depressingly, narrowly, medical account of CP from Contact-a-Family

A depressing account. Coming up to half-time in the Barcelona-Paris St Germain Champions' League quarter final second leg - and I should not have started fiddling with Twitter.

Had I not done so, I would not have linked to the Contact a Family's website, to "Read all about our enquiry service for professionals who work with families with disabled children", nor would I have checked out what they had to say about Conductive Education (nothing), nor would I then have checked out their link to cerebral palsy, the advice they offer, and I would not have found the following:

Most children with CP will have a normal life, jobs and families, but seven per cent are so disabled they require around-the-clock care and assistance with daily tasks, such as feeding and washing.

Sounds great "most .... normal life, jobs and families". But is it true? Can anyone confirm this from actual figures? I'm sure it must be; as no less than a Professor of Paediatric Neurosurgery, Michael Vloeberghs of Nottingham University Hospital, is apparently credited with it.

Looking further down the page, I thought I'd check out what Contact a Family and Professor Vloeberghs has to say about "treatment" and read this:

As CP is a brain injury, there are only treatments for the physical symptoms and at the moment no cure is available for the condition.

What a depressing statement this is! Is it any wonder that parents are left feelong hopeless - without Hope? There's more. The medical profession can offer:

Treatments can consist of oral medication to relieve the muscle tightness, surgery to avoid deformity of joints because of the muscle tightness and injections of botox in selected muscles, which provides relief from spasticity. Severe spasticity can be relieved with an implanted drug pump that injects baclofen (a muscle relaxant and anti-spastic agent) into the spine, with good results for the general care of the child.

Drugs, surgery and implants. And just in case you have any doubt at all that the medical people have got all this sussed, be warned: 

There are many unconventional treatment programmes ....  None of these treatments are endorsed by healthcare providers and aside from being very expensive they can be dangerous or even fatal.

None of these "treatments" (sic) "are endorsed by healthcare providers" ... "dangerous or even fatal".  So if feeling hope-less is not enough, parents should now feel fearful - or even guilty, for looking elsewhere than the "healthcare providers" on whom they are now so dependent. 

What if we look beyond the "healthcare providers"? Contact a Family's "enquiry service" has nothing at all, nothing at all, to offer the  "professionals who work with families with disabled children" for whom the service is provided, never mind the parents, when it comes to learning development, learning, teaching, and most of all education and upbringing of a child with cerebral palsy.

Why not? Why not? Conductive Education has been available in the UK for years. Contact a Family has been around the block a good few times, too. To purvey such a throughly medical account is no longer acceptable or good enough. No excuse. Hopeless. Depressing. A disservice.

Back to Barcelona.

 

 

 

 

How many pupils will be entitled to an Education, Health and Care Plan?

Following a lead from @scope on Twitter, "Excellent article from @jreynoldsMPon the battles families with disabled children face & the current #ChildrensBill", I find that in a knowledgable article for Progress Online, "Transforming the Lives of Disabled Children", Jonathan Reynolds MP repeats a statistic I have read elsewhere: "it is estimated that only 13 per cent of disabled children or those with SEN will actually be entitled to [an Education, Health and Care Plan]."  

Where does this figure come from? I seem to have seen it in several places elsewhere, including as I recall, in blog by Richard Hawkes CEO of Scope, which may have briefed Jonathan Reynolds MP. 

On the face of it - and I tested this statistic a few days ago on one of Paces' Trustees, who was duly shocked by it - only 13% of disabled children and those with special educational needs qualifying for an EHC Plan is indeed shocking: undoutedly a wretched example of "the cuts" on the most vulnerable.

Yet consider this:

Education, Health and Care Plans are intended to replace Statements of Special Educational Needs.

Currently, 2.7% of the total pupil population have such a Statement.

Currently, 20% of the total pupil population are designated as having a special educational need.

In other words, currently, a maximum of 13.5% of the total pupil population with special educational needs (20/2.7*100=13.5) has a Statement of Special Needs:  a percentage remarkably similar to that 13% quoted by Jonathan Reynolds MP (and others).

In fact, the figure quoted by Jonathan Reynolds applies both to pupils with special educational needs or a disability taken together ("... only 13 per cent of disabled children or those with SEN ...")

As there are children with a disability who do not have a special educational need, the total of both categories must exceed the 20% of children with a special educational need. In which case, currently, the percentage of pupils with a Statement falls as a percentage of the total population of those with special educational needs or disabilities, when the number of children with disabilities (but not SEN) is included.

You can test it for your self. Take a number. Say there are currently 20% of pupils with SEN. Say there are currently a further 5% of pupils with a disability but no SEN. The total population together is 25%. 25 / 2.7 = 10.8%.

On this calculation, the estimated "only 13%" of pupils who will be entitled to an EHC Plan, is actually more not less than currently. 

So, assuming the data and my arithmetic are correct:

1. How many pupils will really be entitled to an EHC Plan?

2. Where does the figure of "only 13%" originate?

3. Is what's going on here more to do with politics than statistical data and analysis or the interests of those (currently 2.7%) most educationally vulnerable children in our society? It's certainly confusing.

PS. A liitle more confusion: Jonathan Reynolds' article is entitled "Transforming the Lives of Disabled Children".  Or should that be children with special educational needs, who may or may not have a disability rather than disabled children, who may or may not have a special educational need?

 

 

 

 

IPSEA warns of loss of legal protections in draft SEN Code & Regulations

28 March 2013 

IPSEA has published a briefing on the potential loss of existing legal protections for children with SEN in the indicative SEN Code and draft Regulations. 

There's a downloadable briefing from IPSEA.

About nothing much ... and everything SEN, maybe

Not long awake. Contemplating the snow falling outside again. Do I set off before or after the early rush? First, a cup of tea. Read the newspapers online. 

I'd not previously taken notice of the Pupil Premium. It's for "disadvantaged" pupils not specifically special education, though there must be pupils "with special educational needs" who are also "disadvantaged". Setting that puzzler aside as I couldn't work it out without breakfast, I checked out a couple of pages on the DfE website.

That brought me to the Education Endowment Foundation, like the Pupil Premium, something else I was only dimly aware of. It is, it says of itself, "an independent grant-making charity dedicated to breaking the link between family income and educational achievement, ensuring that children from all backgrounds can fulfil their potential". All very well.

I hesitated over "Independent", one of those popular contemporary words that increasingly mean less and less. Take it out and is there any discernible difference? I suppose the EEF copywriter is trying to say that it's independent of the DfE from which, as far as I can make out, it gets much of the funding it gives out in grants, so if Ministers or DfE pull the plug on that, what price "independence"?  

I hestitated, too, over "fulfil their potential", that phrase, in various guises, that appears everywhere in educational thinking. It always strikes me as such a limiting phrase, as though potential cannot be transformed by inspirational teaching. Surely, what education is seeking to achieve is to transform the potential of all pupils? Anyway, leaving behind the untransformed EEF copywriter, I read that the EEF has funded 56 projects so far, some with very considerable grants, indeed. Fascinating. Well worth a look. "The EEF funds projects that it believes have the potential to raise attainment among disadvantaged pupils, and evaluates their impact through robust and independent evaluations. This section provides an overview of each project." Part of me is excited by these projects. Part asks, if projects such as these are needed, some of which seem pretty fundamental to good teaching as I understand it, what has been going on in our schools all these years? Stepping back and pausing before moving on, I wonder what the EEF's 56 projects would tell a researcher about the concerns of the modern 'educationista'?

And so to Ben Goldacre. The EEF Welcomes Ben Goldacre Report Building Evidence into Education. Bringing up children has long since struck me as essentially a messy business, all rather hit-and-miss, susceptible to waves of fashion. No matter how you professionalise upbringing as education or schooling or teaching (to be carried out only by 'qualified' teachers, of course), it remains, in essence, a messy business, into which research and evidence can offer only limited insights.

That's no case for not asking questions, of course, and seeking answers. Getting the questions right, would seem an important starting point. All of which rambling around these links and pages left me with a question.  According to the recently published "The Tail", one in five children leaves school in England without basic literacy and numeracy skills. These, I'm guessing, would be the same 'disadvantaged children whose potential the EEF is seeking to fulfil. Another puzzler not to be solved before breakfast is the extent of the overlap between these one-in-five disadvantaged pupils and the one-in-five pupils with special educational needs. Are they separate or different or overlapping?

Because my question - "just asking" - as they say on twitter - is whether or not there is a similar pot of funding for projects working with teachers in schools across England, and to "evaluate their impact through robust and independent evaluations", for special education, and especially for those nearly 3% of children who have Statements of Special Educational Need, soon to become the widely-welcomed Education, Health and Care Plan?

If there is such a pot of funding, then those of us working in conductive education settings - and the parents - would be glad to know of it. Perhaps you would let me know? 

Time for breakfast.

 

Are the big disability charities fighting hard enough for ILF funding?

Disability News Service reports growing fears that funding now provided for 19,000 Independent Living Fund recipients to help them be better able to be independent, to work, and to contribute to their community will be reduced to 'a safety net' after 2015-16.

Department of Work and Pensions papers handed to lawyers for the 5 judicial review claimants last week appear to justify concerns that former ILF funding will be substabtially cut.

Especially worrying is the posture of the "large disability charities" over ILF which is revealed. Scope, Mencap and the MS Society are specifically mentioned:

"The DWP documents also reveal officials’ surprise that none of the large disability charities had requested meetings with the minister when the government suggested ILF would be closed, while some had not even responded to last year’s consultation." 

 

Teachers and training and special education - and Tom Peters

Tom Peters argues that "The very best and the very brightest and the most energetic and enthusiastic and entrepreneurial and tech-savvy of our university graduates must—must, not should—be lured into teaching. (They need not stay for life—one would be happy with 5 years, ecstatic with 10.)"

Me? I'd settle right now just for teachers of children with cerebral palsy to be trained to do so. 

Fight to save Independent Living Fund goes to High Court

From Channel 4 News "Disabled living fund changes challenged at High Court"

This afternoon, in the High Court, a legal fight begins to prevent the closure of the Independent Living Fund (ILF).

The ILF is a £320m fund that helps around 19,000 people with severe disabilities to live independently, and these five men and women - on behalf of thousands of others - are challenging the Government's decision to scrap it from 2015 and devolve it to local authorities instead.

One of the claimants is 73-year old Anne Pridmore, who has cerebral palsy and needs 24 hour care. I've lived in this house for 47 years and didn't expect to have to campaign to stay in my own home at my age.

She has a rota of personal assistants who help her with everything from getting up, to eating, to going out - and to the loo. At the moment, half of that is paid for by the ILF, the rest by the Local Authority.    

Read More

My daughter, Sarah, and her two friends who share a house of their own, with a rota of support like Anne, depend on ILF income for continuing to live in their home.

"If we can't afford for people to be disabled, what's the plan?"  The Guardian

"This is about the most severely disabled people in society, people whose disability brooks no ambiguity, having money stripped from them until they can no longer live dignified, fulfilling, stimulating lives."

"Those with the greatest needs comprise 2% of the population yet are taking 15% of cuts. That's more than a loss of dignity".