Paces

The Autism Education Trust - impressed, I want one for #CondEd

The Autism Education Trust: I'm impressed with what can be achieved, though since it was set up in 2007, I suspect I should have known of them. Is this what we need for Conductive Education in the UK?

"The AET was launched in parliament in November 2007 with support and funding from the government. It is the only umbrella organisation working specifically on autism education across the voluntary, public and private sectors.

The Autism Education Trust (AET) is funded by the Department of Education (DfE) and was founded by Ambitious about Autism (formally TreeHouse), The Council for Disabled Children (CDC) and The National Autistic Society (NAS).
The AET is a partnership of organisations with an interest in autism and works to improve education for children with autism. It is hosted on behalf of the partnership by the NAS.

The AET helps raise awareness of the importance of appropriate educational provision for children and young people on the autism spectrum through a range of dedicated events, information sharing conferences, web based resources and ongoing research and project work.

The AET is governed by a Programme Board made up of professionals, parents and people on the autism spectrum. Its work is informed by a voluntary Expert Reference Group and Youth Council (young people on the autism spectrum and their siblings).

Are we being crazy enough? #CondEd

My last post, following Steve Hilton's departure from Number 10, asked "Why aren't we being more radical?" I was thinking of Paces, of course, but also of conductive education in the UK in general.

We had two workshops at Paces this week. I tried on both days to remind Trustees, managers, staff and parents that conductive education is not just another "alternative therapy", one option among many, but a radical departure, a quantum leap forward in the understanding and practice of the education and upbringing of children with motor dysfunctions.

Here's another Steve, the late Steve Jobs:

“Here’s to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes… the ones who see things differently — they’re not fond of rules… You can quote them, disagree with them, glorify or vilify them, but the only thing you can’t do is ignore them because they change things… they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.”

If we are the ones who really are going to "change the world" for children and adults with motor dysfunctions, are we being crazy enough?

Actually, another thought occurs to me. Where are the young ones, conductive education's young crazies?  Don't just leave it to the old men like me! Write to me! Come to Paces! Let's make Paces a crazies place to be!

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#CondEd is a twitter hashtag

On sharing data. Lessons for conductive education centres maybe?

Just a link, really. The article speaks for itself.

"Data for Promotion. Engagement and Reporting" source Stanford Social Innovation Review.

"Many organizations use selected statistics, data, or other information in press releases and calls to action, but we may not look at those numbers or statistics as stories that compel us to share, respond, and take action."

Paces' Trustee becomes regional ambassador for Cerebra

Martin Bown, a Trustee of Paces Sheffield, has been appointed a regional ambassador for Cerebra, the "charity set up to help improve the lives of children with brain related conditions through research, education and directly supporting the children and their carers".

From the Yorkshire Post 22 July 2011:

"Accountant helps charity make sums

A national charity has appointed a Huddersfield businessman as its regional ambassador.

Cerebra says it works to improve the lives of children with brain-related neurological conditions, through research, education and direct support.

Martin Bown, who is managing director of an accountancy company and has numerous links with the profession in the region , says he became involved with the charity as his daughter Isabella, three, has cerebral palsy.

She goes to the Paces High Green School for Conductive Education in Sheffield.

This year, Mr Bown raised £2,200 for Cerebra when he ran in the London Marathon.

Mr Bown said: “I was delighted when, as a result of the marathon, Cerebra asked me if I would like to become a representative for them in Yorkshire.

“Our family live with cerebral palsy and know how important it is to receive the right levels of support.”

Mr Bown added: “I’ll be raising the profile of Cerebra throughout the region and telling people not only about the marvellous work the charity does but also encouraging them to get more involved themselves.”

 

Julie Evett wrote to her local MP and to David Cameron

You can find Julie on Facebook. She's a campaigning Mum of 4-year old Rose who more than once has made national headlines. Her personal story was one of those featured in the November 2009 documentary "When a Mother's Love is Not Enough", Rosa Monckton's film about the pressures on parents of children with disabilities.

Julie has now written to her local MP, Nick Harvey, and to David Cameron. She has kindly allowed me to copy them here. Unfortunately, I can't reproduce the unique layout of the originals but you can download them here:

Download Dear_Mr_Nick_Harvey

Download FOR_THE_ATTENTION_OF_DAVID_CAMERON

Text of Julie's letter to the Prime Minister, David Cameron:

FOR THE ATTENTION OF DAVID CAMERON

Dear David Cameron.  My name is Julie and I have a four year old daughter called Rose who has an undiagnosed brain disorder. You and I took part in the same documentary

 ‘When A Mother’s Love Is NOT Enough.

You watched my daughter screaming in pain, you listened to me talking about wanting to commit suicide and wanting to take the lives of my other two children as I couldn’t cope with the huge demands of caring for Rose 24 hours a day 7 days a week.

I still can’t cope with the daily battles.

I moved from Lincolnshire to Devon in the hope of better services and i’m still battling daily. I’m emotionally and physically tired.

 I just want to be a MUM

PLEASE help my family and every other family with a disabled child before its too late.

THERE ARE HUNDREDS OF FAMILIES WHO ARE EXHAUSTED, many close to breakdowns, others contemplating suicide .

FAMILIES LIKE MINE.

Julie and Rose, Devon

 

Text of letter to Nick Harvey MP:

Every Child Matters?

Every Disabled Child Matters too! And their siblings AND their carers.

Dear Mr Nick Harvey, I have an appointment on the 18^th of February with yourself. I shall be attending with another parent, her disabled daughter  and my disabled daughter Rose. Both girls are severly disabled and will be in wheelchairs. Here is a brief email to give you some background information.

I have had to give up work to care for my daughter around the clock and find myself battling everyday to make sure my daughter has a good quality of life. I have two other daughters aged 13 and 10.  These are the things I’d like you to help me with.

To make my life bearable and to manage caring for Rose I desperately NEED:

A suitable affordable home. I have been placed in band B on the housing register. I am allowed to bid for a four bedroomed home (these are very rare) however my family need a home on all levels, I do not wish to care for Rose in a downstairs bedroom away from the rest of the family. Can you please discuss this with the housing department on my behalf.

Rose has had many admissions to Caroline Thorpe Ward and will do for the rest of her life. The nursing staff do a fantastic job however the ward needs new specialist equipment, also a member of staff dedicated to families with disabilities to support them throughout their stay.

On two occasions I have had to stand my ground when doctors have ‘discharged’ Rose home. On both occasions (after battles) I have had Rose transferred up to Great Ormand Street Hospital. This severly impacts on family life and incurs great costs and is physically and emotionally very draining. I would like doctors on the ward to be reminded that parents are the ‘lead’ when it comes to their childs’ care. Parents need to know that they can ask for second opinions and need support in this area.

There are many many services that are not available and many that clearly lack funding. Children like Rose are fully depended on their carers to speak up for them and many families are too tired to do this. I can completly understand this. In my opinion it seems that those who ‘shout loud enough’ get heard. I do not want special treatment for my daughter I just want peoples attitude to change towards every single disabled child so that they are  all treated equally.

North Devon is a beautiful place, with many elderly and vuneralble residents. I’d appreciate your help and support in making changes so that North Devon can offer excellent care to the disabled as well as the abled and set examples for other counties.

I have also sent you an email that I sent to David Cameron and also to the press,  I have met with you on a couple of occasions and you have been very thorough and chased up things very quickly, I hope this will be the case again.

Kind regards Julie Evett

 

 

2 blogs and a blogswarm - new to me anyway

Thanks to Glenda Watson Hyatt (@GlendaWH) for the ReTweet which led me to two blogs not previously known to me and to a "blogswarm" (also a word not previously known to me) campaign around the withdrawal of the mobility component of Disability Living Allowance from those living in care homes.

I've not explored either blog thoroughly enough yet to recommend them but here they are:

The Broken of Britain - the disabled people's campaign. On Facebook and twitter too. Their DLA campaign is called "One Month Before Heartbreak" and the original link from Glenda was this here.

Carer Watch's Blog - of the non-party-political group Carer Watch - a campaign group for carers across the UK run by independent unpaid carers.

What loss of benefits means for the family of one adult disabled son

Susan and John Kirkman of Sheffield are parents of a 24 year old autistic son. Today, they had a letter published in The Independent on the changes to housing benefit and how it affects their son and themselves. Their letter ends:

"To be a parent of our son means unending anxiety and a constant battle against the ignorance and thoughtlessness of the state."

I do not quote this letter to make some negative party political or anti-government point. Rather, I want to emphasise the perspective which a parent, perhaps only a parent, can bring to national debate. Their conclusion struck a chord.

It is also not my practice to quote wholesale from newspapers - the journalists have a living to earn, after all. But on this occasion I make an exception. Here is Susan and John Kirkman's letter:

What loss of benefit means

The spending review has yet again revealed the Government's lack of forethought and concern for the disabled. They show no awareness of the unintended consequences of denying people under 35 the right to housing benefit if they live alone.

Our 24-year-old autistic son lives alone, except for full-time care support. Under the proposals he will lose his housing benefit.

He cannot share his house with people other than a range of support workers because of the severity of his autism. So what happens? He will cost the local authority thousands of pounds a week if he has to live in a residential home. He will be very unhappy and cause endless problems because of being with other people, at even more cost to the NHS. This makes no sense, morally or financially.

Our son gets a very small amount of housing benefit as we have helped him buy a house, which he is purchasing using our large contribution and a DWP mortgage support, the rules of which don't allow him to share the property with anyone else. We are grateful that he was given this opportunity, but it appears that the Government now wants to take away his independence and a life he values.

To be a parent of our son means unending anxiety and a constant battle against the ignorance and thoughtlessness of the state.

Susan Kirkman,

John Kirkman,

Sheffield

Top tips for reporting our impact #CondEd

With thanks to @NCVO on twitter:  "Reading: Top tips for reporting your charity’s impact"

"... a recent report from New Philanthropy Capital, Talking About Results, says that charities are much better at talking about what they do than why they do it and what it achieves ..."

I've been trying recently to work out how Paces can make better coordinated use of social networking on the internet to reach out to parents and friends.

I've also been pondering lately how Paces and, more generally, CE can report better what we do.

The 4 'top tips' for talking about results are:

• Bring it back to Why
• Use the voices of the people you support
• Think about how you measure success
• Be honest

I shall now go in search of the New Philanthropy Capital report. You can follow their top tips to the Ask Charity website - one I'd not previously come across and will explore after lunch.

The good ship 'Conductive Education in the UK'

Andrew Sutton ("The Future of Conductive Education in the UK: Catch the tide or miss the boat" - (the 7th in his reflections on the recent Conservative Party seminar on SEN) - quotes from Julius Caesar Act 4 Scene 3 to express the hope that "the good ship CE in the UK can get its act together, and act."

BRUTUS. There is a tide in the affairs of men.

Which, taken at the flood, leads on to fortune;

Omitted, all the voyage of their life

Is bound in shallows and in miseries.

On such a full sea are we now afloat,

And we must take the current when it serves,

Or lose our ventures.

For some several years now, I have been monitoring statements from all three main parties on a series of inter-related policy issues:  schools, special needs, parents, carers, charities, the 3rd sector, communities, regeneration and - because it is an interest of mine, digital inclusion.

Tonight, after having read Andrew's posting, I was idly doing some desktop tidying, updating and reinstalling software, when I came across this clip from The Times, 3 July 2008, the guest writer is David Cameron:

Let me give you two examples of how this virtuous circle can work. We will give parents the power to set up new schools. Once parents are more closely involved in how their child's school is run, they will take more responsibility for making sure it is a success. That will drive standards up and provide our society with the economic and social security that a skilled workforce brings.

The same goes for welfare reform. We will give more power to charities and social enterprises that really know how to get people into work - paying them for their success. Armed with this power, they will have a greater stake in - and a greater responsibility for - making success. And their success will mean more people moving from long-term poverty to long-term employment.

This is a commitment from Cameron which, if he forms the next Government, represents the best opportunity there has been for conductive education in the UK since 1986.

I have concerns about the emphasis placed here (and by all three main parties) on "employment". By this they mean "having a job", or being the waged employee of an employer, as someone-I-recall-not-who once put it, they mean being 'a wage slave'.  For many children with disabilities this is not a realistic aspiration for their adulthood. At Paces, ("....supporting disabled children into independent adulthood as active citizens ....") we have experimented (when funds have permitted) with alternatives to being an adult 'wage slave' as part of 'Leaping the Void', our conductive education programme for young adults.

Setting aside, for the moment, that particular discussion, I am of the view that there is indeed "a tide in the affairs of men" that is not just driven by the inevitability of public sector cuts but which represents new thinking about new forms and practices in the delivery of public services for the 21st century. There are real differences between the three major parties on these issues and choosing between them will,on the day, come down to a mark on a ballot paper.  But that there is a "tide" and that "we must take the current when it serves/Or lose our ventures", I have no doubt.

More than that, we can, because the policy debate in these areas is not yet settled in any of the three main parties,  if we so choose and if we are bold enough, influence policy formation on behalf of conductive education. 

To act, or not to act? as Hamlet might have said.

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When Cameron came to Ecclesfield in S. Yorkshire ...

When Tory leader David Cameron came to Ecclesfield in South Yorkshire ("Cameron Direct"), Karen Hague of Paces got to ask him a question about special educational needs, the 'statementing' process, and the problem of local authorities undertaking the assessment as well as holding the purse strings.

Hear Karen's question and Cameron's answer at about 30 mins into the recording.