Paces

Taking the long view, for the moment

Just heard Sarah's going to be home late. Hasn't yet left Paces. Don't know what time she'll be in for tea. Transport company being evasive about where her taxi is and likely time to pick her up. Funny same thing happened last Friday. 

Next week she's joining her two friends - and soon to be housemates - for afternoon tea, to see their new bungalow. All refurbished and newly painted and kitted out by AbbeyCare. Sarah has chosen lilac for her bedroom colour scheme. The great and probably unique thing about AbbeyCare is that it was set up by parents of a child, now young woman, with cerebral palsy, and their speciality is caring for the younger disabled client with complex health needs in their own homes.

It's good to feel there'll be someone to care for Sarah when in future the taxi is late, as well as the team at Paces.

Sometimes it's hard to take the long view. Just now I'm more concerned about the next few weeks and Sarah leaving home for her new home.

What set me off with this little posting was a comment over on Conductive World, Andrew reflecting on the "inevitably long-term perspectives" of parents, as he draws attention to a posting on a Belgian Conductive Education blog, which Andrew kindly translates on his blog.

It's a familiar story - and worry:

This anxiety refers to a question: what can be the sense of a process of guiding one's children on a along a path... that ultimately takes the form of an dead end? What is the sense of a process that ask someone to go forwards... towards a brick wall.
Unfortunately, the answer is a simple one: there is no sense!

The writer calls it "a brick wall"; we've said it's like "jumping off a cliff" or "hurtling into a void" (which is why we called our young adult group "Leaping the Void"). The challenge is continuity, taking the long-term perspective, the long view, helping young people "into independent adulthood as active citizens" as it says in the header to this blog.

The SEN Green Paper is an odd document, I find; rather muddled and internally contradictory. But it does propose one much needed radical change, the recognition - insistence even - on the importance of individual planning from 0 - 25 years. For me, of course, this raises - as it has at Paces since about 2000 - all sorts of questions about how Sarah (and others in Leaping the Void) should be helped to discover for herself what a 'conductive life' might mean and how 'conductive living' might- or should - replace 'conductive upbringing' or 'conductive pedgagogy'.

I wish our Belgian friends every success as they try to work out how, sustainably, to create "a place for ​conductive pedagogy that can accommodate children up to age 18" .... and beyond, no doubt, to independent citizenship apart from their parents.

Cherish the Parents

Over on Conductive World, Andrew Sutton asks "Cherish parents. Is this bureaucratically possible?"

Together, Sarah, her Mum and I are perhaps about to experience a time of enormous change. It is one we, her parents at least, are looking forward to and yet are anxious about, swinging constantly between these two extremes. Sarah is about to move into a new home, along with two of her friends.

As part of this process, we have received the following questionnaire. It is entitled "Individual Support Plan". Presumably to be filled in by Sarah, there are 7 questions:

1. My Life at the moment

2. What is important and essential to me?

3. What do I want to change?

4. What can I bring with me? (e.g. mobility car, special equipment, Informal Support, DLA)

5. How will I make, or be supported to make, decisions?

6. How will I be supported and how will I spend my budget?(Including contingency)

7. Making my plan happen. (E.g. Bank account; arrange service start etc.)

I cannot find the words to describe how this makes me feel other than that I haven't a clue how to help Sarah go about filling it in.  Do you?

"Care" is not enough

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

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

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

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

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

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

Wolf review of vocational education

With the uncatchy title "Review of Vocational - The Wolf Report", DfE has announced the publication of the review of vocational education by Professor Alison Wolf.

The report "considers how vocational education for 14- to 19-year-olds can be improved in order to promote successful progression into the labour market and into higher level education and training routes, and provides practical recommendations to help inform future policy direction, taking into account current financial constraints."

Secretary of State, Michael Gove's widely reported take on the report, in a parliamentary written answer is that "too many existing vocational qualifications are of poor quality or are offered inappropriately to young people. Too many young people are studying courses that do not enable them to progress." 

Of general interest, the report is a challenging contribution to an important debate, and worth reading carefully on that count. But my first, admittedly quick, reading suggests there is not much here in curriculum terms for those of us engaged in creating innovative new opportunities in conductive education classrooms for this age group.

There is, however, this:

"… this country has many young people who are classified as having ‘special educational needs’, without being severely disabled, and/or are highly disengaged, persistently truant, and, at the extreme, excluded from school. This is an international phenomenon; but England is towards the top end in its proportion of young people who are failing to achieve basic academic competencies by the age of 16 The performance of both other countries, and of the best schools in this one, make it clear that our current levels of low attainment are in no way inevitable.

"Although Foundation Learning was and is a genuine attempt to develop a curriculum suited to these young people, in practice there is a risk that it will simply legitimise failure with a significant proportion of this low-attaining group. A detailed examination of educational programmes designed for the most low-achieving was beyond the remit of this Review. They are not necessarily or even predominantly vocational in any real sense of the word; and concrete recommendations here would also pre-empt the Department’s ongoing review of SEN provision."

We must wait, therefore, until the publication on Tuesday next of the DfE's Green Paper on Special Educational Needs for further insights. (The link is to a post on Conductive World blog).

What does catch my eye is ".... educational programmes designed for the most low-achieving ... are not necessarily or even predominantly vocational in any real sense of the word".  So what might a curriculum look like that is in any sense at all vocational for this group?

May I be allowed to end on a small quibble? It's with the perspective in the phrase "most low-achieving". Of course we know what Professor Wolf means. But it rather belittles the amazing achievements of some, perhaps many, in this group - despite all the odds. And, perhaps, adds then to the wrong expectations and solutions.  Something of the same perspective, which I dare say is pervasive, is also found in the earlier "young people who are failing to achieve". Again, one understands what is meant and undoubtedly there are young people who are not achieving what they might; but the failure is on the part of the system and the teachers, not the pupils. Let us not "blame the victim". It is we who are failing them; not they who are failing us. The perspective is important. It is a perspective I first learned from conductive education.

 

Unlike me, they would not love her

"Unlike me, they would not love her", so said Janet Cameron, in April 2006, rejecting the option of her 24-year old daughter being in permanent care. "One day, we may have to accept that Sophie would be better off living elsewhere, that we can no longer manage. But I will feel that I have failed her again." For a year, Janet had been writing in the Guardian of being a carer for her daughter. It is evident that being Sophie's parent, her Mum, was first and foremost.

On 30th May 2006, Sophie died suddenly and unexpectedly.

Janet's last "Who Cares?" column appeared on 6 September 2006.

Sarah' like most evenings, is sitting on the sofa in the front room, drawing while listening to tapes and watching Jamie Oliver on TV. Her Mum has gone upstairs - possibly to check emails. I'm .... well, I'm writing this.  In all, a very ordinary evening. Typical even.  We've had an easy pleasant day. Indistinguishable from almost any other Saturday.  The sun shone for a while: a chance to continue tidying up in the garden, ready for spring.

We are at the point when it is becoming increasingly difficult to manage and - what is perhaps more important but probably counts for little in the scheme of things - we should like to have for ourselves what time remains to us of our own lives. 

Ideally, we would find somewhere for Sarah to live with her friend, Kirstin. But we are no nearer solving that than we were when she left school 11 years ago.  As a society, we seem to have no solution, no system to manage the transition to living independently - for young adults or their parents.

Like Janet Cameron, I find the thought of Sarah going into care unbearable. yet if something should happen to one of her parents before we get her settled, that is what will happen. Who, in care, would love her, like her Mum and I do?

50 minutes with Lars Mullback - inspiration

At 50 minutes, "Yes, you can" is a long film but every minute an inspiration.

Thanks Lars for making available a version with English sub-titles. Thanks to Andrew Sutton and Susie Mallett for the alerts.

My simple message is this: Watch it  - all the way through.

Being enterprising ... Talking Enterprise

I've mentioned Mike Chitty on this blog a number of times.

His approach to community development is one that for me resonates with conductive education work with adults or rather how such programmes might be developed, as we have some way to go. Located in "assets" not "needs", focusing firmly on the individual rather than "community" or "business skills", with an emphasis on "being enterprising" and "becoming", Mike's take on development is about people having "active agency in their own lives".

Drop in on this talk and listen to Mike himself: "Talking enterprise, community and entrepreneurship" ... and stay to the end, when Mike shares his thoughts about schools and education.

 

  

 

Taking the negative view

A few weeks ago we had an assessment to do with our daughter Sarah's respite funding and allocation.  It was obvious that we needed to emphasise what Sarah could not do. Ten days or so later, we still felt the impact of that couple of unrelenting hours - it felt like when we looked at Sarah we saw a person who could not rather than the person we love who can.

Today I heard about and visited a new website mapping the impact of "the cuts" on the voluntary sector in England and Wales. Voluntary Sector Cuts is fascinating and worth a moment of your time. The site is a collaboration between some well-known, mostly national and regional, infrastructure organisations. Visitors from voluntary and community organisations are invited to fill in a simple form and share their experiences of the impact the cuts are having and so build "a wider picture of the scale of the challenge ahead".  (The post I was writing when I came up against "bloggers' block" was about "the cuts". ) Twitterers can follow @vscuts, too.

Earlier this week, I filled in an online questionnaire for a national carers' organisation about my experience as a carer. No doubt it will help "build a wider picture of the scale of the challenge" (to borrow those words) facing carers across the UK. Mostly it made me feel uncomfortable - partly because of the difficulty I have with the word "carer" used exclusively in such a way as to preclude my role as a Dad, which is important to me and my expereince in "caring" for my daughter; and partly likewise because it failed to address me as one of a couple who share the caring - loving - relationship we together have with our daughter. But most of all because it seemed really to want me to say how bad being a carer is.

And that's what all these three examples have in common: a relentless focus on the negative.

And it all reminds me of King Lear (Act 1.i)

Lear: Nothing will come of nothing: speak again.

Right-To-Control Trailblazer press release in full

I must admit, I've come not to like any programme title with the word "Right" in it and "Right to Control" just sounds naff to me.  If it's got to be "Right to", maybe "Right to Enjoy" would have been more positive? Anyway, here is the press release in full:

NEWS RELEASE

EMBARGOED UNTIL MONDAY 13 DECEMBER

 DISABLED PEOPLE GET RIGHT TO CONTROL SERVICES

 Today sees the start of a radical shake-up of the way disabled people use state funding, allowing them to buy their own support services or equipment through the Right to Control.  

For the first time, disabled people in the Trailblazer areas can combine money from different state funding streams, for example as a cash payment, to be spent on whatever they think most appropriate for their needs. This will allow a more personalised service, joining up housing, employment and community care.

There will be advice to help people choose services and decide how to spend their money, or if people are happy with the support they currently receive, they won’t have to change anything.

Minister for Disabled People Maria Miller, said: "This is about increasing personalisation and putting disabled people in charge of their own decision making – instead of telling them what they can and can’t spend their money on.

“Disabled people should have the same choices and opportunities as everyone else and I am convinced that this will help to deliver the greater independence that disabled people tell me they want.

“I need to make it clear, that Right to Control does not change eligibility for these services, but means that disabled people can use their funding more flexibly.” For example, someone with a learning disability may get help from Supporting People to learn skills like cooking and budgeting. They may also get support from Work Choice, which helps people find a job. They could choose to combine their support by paying for a local college course, where they learn life skills and job skills.  

Trailblazers, partnerships between local authorities, Jobcentre Plus and disabled people’s organisations, will work with disabled people to develop individual support plans. Each plan will make effective use of all the funding available to an individual, to meet their goals.

In total, Trailblazers received £7m to make the changes necessary to deliver the Right to Control and to identify the best way to deliver the new service.  

NOTES TO EDITORS

1. The support services included in the Right to Control Trailblazers are:

• Access to Work

• Work Choice

• Independent Living Fund

• Non-statutory housing related support (also known as Supporting People)

• Disabled Facilities Grant and

• aligned with Adult Community Care

 2. Disabled people taking part in the Right to Control Trailblazers will be able to choose to:

• continue with their existing services if they are happy with them

• let a public body arrange for a different support service or equipment;

• take a direct cash payment and buy services or equipment and support themselves; or  

• have a combination of these.

 

 3. Five Trailblazers are launching on 13 December:

• Essex County Council

• Leicester City Council

• London Borough of Barnet

• London Borough of Newham

• Part of Surrey County Council (the 2 parts are Epsom and Ewell Borough Council, and Reigate and Banstead Borough Council).  

 

4. Barnsley Metropolitan Borough Council and Sheffield City Council will start on 1 March 2011. Greater Manchester (including Manchester City Council, Oldham Council, Bury Council, Stockport Metropolitan Borough Council and Trafford Council) will start on 1 April 2011.

5. Disabled people in the above Trailblazers will have a legal right to:

• Be told the monetary value of the services available to them;

• Have choice and control over how this funding is used to meet agreed goals;

• Be entitled to receive a direct payments or to have services commissioned on their behalf or to have a mixture of both

6. The Right to Control has been developed in partnership with disabled people and their organisations, through the Right to Control Advisory Group, chaired by Baroness Jane Campbell. Government departments and service providers are also members of this group.

7. The Office for Disability Issues (ODI) has led the development of this policy. ODI is a cross-government organisation that is working towards equality for disabled people. Its website is www.odi.gov.uk   

ILF shut down by 2015. Today 5 Right-to-Control Trailblazers started.

News today from the BBC: the Independent Living Fund which which supports more than 21,000 people with severe disabilities is to be shut down by 2015. The £359m Independent Living Fund pays out an average of £300 a week, to help people pay for carers so they can live at home and not in a care home.

Further reading:

26 July 2010 Statement about the ILF -  Minister for Disabled People, Maria Miller MP

13 Dec 2010 – Disabled people get right to control services - Minister for Disabled People, Maria Miller MP

"Right to Control" is about increasing personalisation and is "a radical shake-up of the way disabled people use state funding, allowing them to buy their own support services or equipment" says the Minister. The Office for Disability Issues (ODI) has led the development of this policy.  Today 5 "Right to Control" Trailblazers started - with Sheffield and Barnsley to be added on 1 March 2011.

13 Dec 2010 Consultation? The Community Care website reports the Minister as saying that "councils would be expected to provide for people who would otherwise have received ILF funding" and that "it was the government's priority to safeguard the position of existing ILF users and that it would consult next year on how their needs would be met in future, following the report of the government's Commission on the Funding of Care and Support. 

12 Nov 2010 Better off in Work?  Report of the Disability Alliance conference addressed by the Minister, including her speeech and Q&As.