WINSTON CHURCHILL MEMORIAL TRUST

STUDY FELLOWSHIP REPORT

A CONTINUING JOURNEY -

THE EDUCATION OF CHILDREN WITH CEREBAL PALSY

This report is submitted in compliance with the terms of the Fellowship 2007. My grateful thanks are due to the Trustees of the Winston Churchill Memorial Trust for the award of the Fellowship, by which I genuinely feel honoured. My grateful thanks are also due to all those people who gave so generously of their precious time, to share with me thoughts and ideas. “The pessimist sees difficulty in every opportunity. The optimist sees opportunity in every difficulty.”

Winston Churchill.

I would be delighted to be considered a ‘Churchillian optimist”.

Norman Perrin March 2008

INTRODUCTION This report is not a diary nor a journal and certainly not some sort of a travelogue. I deliberately did not take with me a video camera or a voice recorder. Although I did take still photographs, these were solely to upload to the internet as a means of sharing with colleagues and family at home where we were at any one time. I say “deliberately” because my intention was quite otherwise; I did not want to be distracted by technology myself nor, when meeting people, did I want the meeting to become formalised by the intrusive presence of a recording device and the necessary requests for permissions that recording would have entailed. Nor did I want, as would have tended to happen with such devices, to turn precious meetings into formal interviews, with the assumption of a prepared set of questions. Those, I certainly did not have. My intention rather was to travel and to meet; to listen and to absorb; later to reflect and to consider how the Fellowship experience should impact on and change my own practice. In this sense, in a very real sense, the Fellowship journey is a continuing one - long after the actual journey has ended. In this very real sense, too, the Fellowship has lasting value and inspirational. However, there was an actual journey. I was fortunate that, with arrangements for our adult disabled daughter settled at home in Sheffield, my wife was able to accompany me, at least on the American stage of the Fellowship. In Vancouver, we met two individuals with cerebral palsy whose passion is inspiring: Yoshi Tanabe, a activist, whose energy, at an age not much younger than mine, challenged me to renew my own commitment; and Glenda Watson-Hyatt, who has created a web presence for her life and work. Along with Yoshi, mention should be made of his team at the Voice of the Cerebral Palsied of Greater Vancouver, Karen and John, and, likewise, having met him, no mention of Glenda should pass without mention of her husband Darrell, himself also a person with cerebral palsy; two impressive teams. Yoshi has created an organisation as I have. I know it is not easy. I do not have cerebral palsy. He reminds me that such organisations should be organisations of people with cerebral palsy. Things should be done. Things can be done Glenda is using the internet as a tool for economic activity and for personal communication. She has used her blog in remarkably innovative ways, to create and to network an international community. In Seattle, the internet theme was continued in conversation with Scott Newlon. The value of Web2.0 social networking and collaboration tools change the possibilities and potentials of the internet – a theme that was to be repeated as the Study Tour unfolded. My passion, of course, is parents. One of Paces’ founding values, along with a commitment to inclusion and partnership working was to put parents at the heart of the service delivery. Two California organisations showed how this might be done in the UK. Firstly, in Santa Clara, California, CEO Mary Ellen Petersen, introduced me to “Parents Helping Parents”. PHP is a services delivery organization and is a model for much of what Paces aspires to be doing. How often have I myself said – and heard others, say “I’m just a parent”? How often during the growing up of our disabled children do we British parents, for all the fine words that come our way about ‘partnerships’, realise that the truth of the matter is that we are very much second to the professionals, in their view? PHP challenges us by demonstrating what parents, helping parents, can achieve.

Secondly, in San Jose, California, Mimi Kinderlerher, Director of Consumer Services at the San Andreas Regional Centre, introduced me to the most radical idea of my whole journey – an innovation in services’ delivery in which I have no doubt California leads the world: a State policy – implemented through State legislation, that puts non-profits at the heart of a totally unique services’ delivery system, solidly based in a services’ Entitlement enshrined in Law – the Lanterman Act. Evidence-based public policy is the coming thing; it’s happened in the medical world; it’s beginning to happen in education. As the culture of contracting public services engages the voluntary organisations, demands for evidence-based statements of ‘added value’ are increasing. My own organistion, to secure a modest grant of £10,000 from the Primary Care Trust, was recently required to evidence the value of our work before the grant was awarded. Yet where is the research on which evidence can be based? At the University of North Carolina, Chapel Hill campus, Dr Debbie Thorpe is leading ACT NOW, a unique research project into promoting well-being among adults with cerebral palsy. This single piece of work has continued to stimulate my own thinking and strategic planning around ageing and well-being in the context of independent living. Debbie Thorpe was alert, too, to the value of “the social web” and the notion surfaced of online social networks of ‘innovators’ and researchers in services for adults with cerebral palsy. And so to Washington, to a visit with Stephen Bennett, Chief Executive of United Cerebral Palsy, that brought me back to matters “OBACE” – “on being a chief executive”- and my responsibilities as CEO for the direction, leadership, policy and strategy of the Paces organisation. For the fourth of the four weeks of the Fellowship, a month later, I went alone to Sweden, to the Sixth World Congress of Conductive Education, and there returned to my core interest in the company of colleagues – practitioners and non-practitioners alike – enjoying the conversation of friends old and new as we explored developments from around the world. I came home with a sense of the abiding importance of the PASSION of INDIVIDUALS, if the TRANSFORMATIONS still necessary to embedding public POLICY in local services’ delivery are to be achieved; of the need for new and renewed ORGANISATIONS and of celebrating best practice based on RESEARCH evidence. The value of the Fellowship is still unfolding: in the actions taken directly as a consequence and also of actions informed by the vision of people I met and the work they were doing. What follows in this report is something of the flavour of that: an attempt to capture it, in a weblog that has been maintained since the Fellowship formally ended and which is now, according to statistics, receiving between 6-7 hits each day. The Fellowship was not a once-and-for-all event, now history, but a continuing journey, the record of which is maintained in the weblog that can be viewed - and commented upon – at http://paces.typepad.com/paces/ In the entries that follow, I have retained the original Title, Category(s) and Date of each weblog posting. In the original, the weblog permits the allocation of multiple Categories. This allows flexible searching and grouping, not possible, of course, in print. Therefore, for easier reading here, I have re-grouped the weblog postings under five broad headings: (a) People. Places. Ideas; (b) Practice. Research. Policy; (c) Being a Parent; (d) Organisation: Governance. Management. Futures. (e) eCommunications. My hope is that in reading this report, the reader will see the Fellowship embedding itself in the continuing journey for change on behalf of those with cerebral palsy and their families. Norman Perrin March 2008

PEOPLE. PLACES. IDEAS. TITLE: Exploring separation CATEGORY: Winston Churchill Travel Fellowship DATE: 07/10/2007 01:57:12 PM I read just a day or so ago, in a newspaper article that I cannot recall the title of (so can't post the link), that separation was an important responsibility of parenthood. We left the UK, dropping our car with our son and daughter-in-law at Watford, going on to Gatwick by taxi after a quick lunch. Youngest grandson, aged one, had decided that he was not going to be separated from Mum under any circumstances. He'd just found his feet and obviously decided to retreat from exploring, back to Mum. The Gatwick airport, terrorism lock-down experience was so horrendous that even duty-free shopping was no relief: heaving with people, most in interminable queues. No seats. Strict checks. We protected available seats and table for over an hour by taking turns to buy tea, go walkabout. Relief came with the flight (Air Transat to Vancouver), which was excellent. Met by friends at Vancouver. So here we are, on the first leg of this remarkable Winston Churchill study tour. Excited by the opportunity we've been given, the breathtaking views of the Canadian Rockies as we flew in; the people we are going to meet ... and I'm thinking about Sarah; the miles that separate us, concerned she's OK. The separation. Grandson understands the tension between exploring and separation pulls first this way and then that. Why then is it so difficult to get across the importance of transition to independence for both child and parents? And the need for parents to be properly supported in that? -------- TITLE: Glenda Watson-Hyatt II CATEGORY: Winston Churchill Travel Fellowship DATE: 07/13/2007 01:24:25 AM Today we met Glenda and her husband Darrell. What a simple sentence that is. What an inspiration! The laughing face that shines out from her weblog1 is everything in reality and more. An indomitable woman; the title alone of her book “I'll Do It Myself”2 (buy it - they should make a film of it) speaks volumes about her. And beside her, what a wonderfully kind, sensitive and supportive man is her husband Darrell. Meeting them has been a privilege that would make the whole tour worthwhile, if only to reinforce the conviction that 'things can be done'. We talked of many things. Most must wait to find a place in my Winston Churchill report. But two are worth a quick mention here: Paces working with Glenda to do a Sheffield stop on her virtual world book tour in the autumn, so Paces' People can meet her - and Darrell too; and of PLAN (Planned Lifetime Advocacy Network)3 one Canadian answer to the question nearly all parents of a disabled child ask, “What happens when I drop of the tree?” I shall explore further, later. -------- TITLE: Voice of the Cerebral Palsied of Greater Vancouver CATEGORY: Winston Churchill Travel Fellowship DATE: 07/13/2007 01:45:15 AM Yoshi himself said he was “a born trouble-maker”. Well, if that's all he is, then he is

1 http://www.doitmyselfblog.com 2 http://www.doitmyselfblog.com/ill-do-it-myself-the-book 3 http://www.plan.ca/AboutPlan_Glance.php

magnificent and we need more like him to give voice to adults with cerebral palsy. Yoshi Tanabe is founder and executive director of the Voice of the Cerebral Palsied of Greater Vancouver (VCPGV). If, when Dru and I yesterday met Glenda and Darrell we thought for even one moment that it was not possible we should be so fortunate to meet another inspirational group of people within such a short space of time, then we had not allowed for Yoshi, and Karen and John and Linda at VCPGV.4 Again, time was not enough and we talked of many things. We came to listen and learn. Listen and learn we did. Tomorrow we leave Vancouver for the next leg of our journey. In 2010, Vancouver will host the Winter Olympics and Paralympic Games. Will Vancouver be ready? This vibrant and welcoming city (with its disabled mayor, Sam Sullivan) should be listening to Yoshi and Karen and everyone at VCPGV and celebrating their voice and input. -------- TITLE: Blink & Leadership CATEGORY: Winston Churchill Travel Fellowship CATEGORY: Third Sector CEO DATE: 07/21/2007 02:39:53 PM Of all the people I am expecting to meet during the Study Tour, only Scott Newlon have we met before; indeed we regard him both as a personal friend and a friend of Paces. We first made contact some years ago when he was a career-break postgrad at Evergreen State in Seattle, and helped DISC in its first attempt to put the LifeMaps project online. We talked about LifeMaps, about how Web2.0 tools might be used for social networking among our parents and, especially, about how the development of the whole Paces Campus might be taken forward as an online project using the same Web2.0 tools. More of that another time. Flying is great opportunity for not much more than reading books. In Seattle, I bought two Malcolm Gladwell books: “The Tipping Point” and “Blink”. The first I'd been recommended; the second I got with it in a 3-for-2 deal. The following, on leadership, is from “Blink”: “The first thing I told our staff is that we would be in command and out of control,” (General) Van Riper says, echoing the words of the management guru Kevin Kelly. “By that, I mean that the overall guidance and the intent were provided by me and the senior leadership, but the forces in the field wouldn't depend on intricate orders coming from the top. They were to use their own initiative and be innovative as they went forward.” .... This kind of management system clearly has its risks. It meant Van Riper didn't always have a clear idea of what his troops were up to. It meant he had to place a lot of trust in his subordinates. It was, by his own admission, a “messy” way to make decisions. But it had one overwhelming advantage: allowing people to operate without having to explain themselves constantly .... enables rapid cognition.” I'd like to think we had built up a similar advantage within Paces: though not everyone, all the time, appreciates this. -------- TITLE: San Francisco CATEGORY: Winston Churchill Travel Fellowship DATE: 07/21/2007 10:00:10 PM All our pre-planning for online communication while away on the Study Tour - setting up Skype and Messenger schedules, this blog, Flickr and such - were brought to nought in San Francisco by one simple event: the failure of the hotel's wireless network for the whole time we were there. Only now, in Charlotte, can we catch up with San Francisco events. The Fellowship journey so far has been an excellent experience; I have learned much already that will inform Paces’ 4 http://www.vcpgv.org

work with children with cerebral palsy and their families. However, more broadly, I am particularly interested in the successful Californian public policy service model of Regional Centers for all people with disabilities and their families, a model which gives a prominent role to not-for-profits, based on the Lanterman Act5 introduced as long ago as the 1960s. However, the Study Tour has already also served to confirm that Paces is still a leading edge organisation when it comes to innovation, especially in education/training and that the Paces Campus model of service delivery - a community of interest within a geographic community setting - is unique, and has attracted much favourable comment everywhere I have been. This blog is not a diary of the Study Tour, but I really must record here the very warm and friendly welcome we received from the San Andreas Regional Center6 and from Parents Helping Parents in Santa Clara7 - and from all the people we visited with them. -------- TITLE: Parents Helping Parents CATEGORY: Winston Churchill Travel Fellowship CATEGORY: Paces' Futures DATE: 07/24/2007 10:56:29 AM California is a powerful reminder that the way we do things in Sheffield and the UK is not the only possible way. The following is from the website of Parents Helping Parents in Santa Clara.8 You should visit and see for yourself. “Parents Helping Parents, a nonprofit 501(c)(3) public benefit agency meets the needs of one of our community's most vulnerable populations-children with any special need and their families. “Parents are a child's greatest resource. The needs of the child are inseparable from that of the parents. Reinforcing and building upon parental strengths is an unsurpassed means to meet the needs of the child. Parents Helping Parents expands the strengths of families through mutual support.” (The author of this comment is Mary Hudler, California Director of Special Education.) “PHP is a 30-year-old nonprofit, family resource center that benefits children with special needs. This includes children of all ages (birth through life) and all backgrounds who have a need for special services due to any special need, including but not limited to illness, cancer, accidents, birth defects, neurological conditions, premature birth, learning or physical disabilities, mental health issues, and attention deficit (hyperactivity) disorder to name a few. “PHP's mission is to help children with special needs receive the resources, love, hope, respect, health care, education, and other services they need to reach their full potential by providing them with strong families, dedicated professionals, and responsive systems to serve them. 83% of all revenue goes directly to programs that benefit children with disabilities or special health care needs, while only 17% is spent on administration and fundraising. “PHP provides education and skills training, information, guidance, and peer support for families with the unexpected diagnosis of and ongoing impact of childhood disabilities, including but not limited to intellectual, learning or physical disabilities and special health care needs.”

5 http://www.dds.cahwnet.gov/Consumer/LantermanActGuide.cfm 6 http://www.sarc.org 7 http://www.php.com/en/index.php 8 http://www.php.com/en/index.php

-------- TITLE: San Andreas Regional Center CATEGORY: Winston Churchill Travel Fellowship CATEGORY: Paces' Futures DATE: 07/24/2007 11:06:05 AM Another powerful reminder from California that the way we do things in Sheffield and the UK is not the only possible way. The following is from the homepage of San Andreas Regional Center's website9. ”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.” As we at Paces prepare our Strategic Plan for 2007-12, I was particularly struck by SARC's Vision Statement:10

• San Andreas Regional Center has a vision for becoming a leader in the field for persons with developmental disabilities

• San Andreas Regional Center will accomplish this vision through an

organization that is trusted to be responsive, supportive, innovative, proactive, well managed, technologically-advanced, and non-bureaucratic.

• San Andreas Regional Center utilizes staff and service providers who are well

trained, competent, creative, compassionate, and committed to this vision.

• San Andreas Regional Center assures community involvement, advocacy for every person serviced, and excellence in customer service.

• San Andreas Regional Center fulfills this vision through mutual respect for

people with developmental needs, families, friends, service providers, agencies, staff, and community. - San Andreas Regional Center supports rather than controls individuals and families, entering into partnerships that promote self-determination and interdependence.

• San Andreas Regional Center supports the vision of the Department of

Developmental Services- “Building Partnerships, Supporting Choices.” •

-------- TITLE: Lanterman Developmental Disabilities Act CATEGORY: Winston Churchill Travel Fellowship CATEGORY: Paces' Futures DATE: 07/24/2007 11:22:07 AM Extracts from the Lanterman Developmental Disabilities Act:11 Note especially the extract from Section 4620 in bold. Section 4501 of the Lanterman Act12 states: “The State of California accepts a responsibility

9 http://www.sarc.org/index.html 10 http://www.sarc.org/overview.htm 11 http://www.arcanet.org/lanterman.htm 12 As 10.

for persons with developmental disabilities and an obligation to them which it must discharge. Affecting hundreds of thousands of children and adults directly, and having an important impact on the lives of their families, neighbors and whole communities, developmental disabilities present social, medical, economic and legal problems of extreme importance.” Section 4620 states “In order for the state to carry out many of its responsibilities as established in this division, the state shall contract with appropriate agencies to provide fixed points of contact in the community for persons with developmental disabilities and their families, to the end that such persons may have access to the facilities and services best suited to them throughout their lifetime. It is the intent of this division that the network of regional centers for persons with developmental disabilities and their families be accessible to every family in need of regional center services. 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.” -------- TITLE: Project ACT NOW CATEGORY: Winston Churchill Travel Fellowship CATEGORY: CE, CP, Learning, Neuroscience DATE: 07/29/2007 09:34:59 PM I continue to be surprised and delighted both by the warm welcome I have received everywhere and the dedication of all the quite exceptional individuals I have had the good fortune, thanks to this Fellowship, to meet. Debbie Thorpe is the leader of a research study, Project ACT NOW13, that I (and she) believe to be quite unique: to provide an understanding of the importance of fitness for maintaining life-long function and quality of life in adults with cerebral palsy, especially the benefit to be derived from aquatic exercise to improve their well-being. We covered many topics, but one topic in particular exercised my imagination, the possibility of a network of innovative practitioners and researchers. Given the lack of opportunities for adults (and children for that matter) with cerebral palsy to access fitness and wellbeing facilities, I was much taken with Debbie's very simple view that the single most important factor was raising heart-rate and sustaining it over specified period of time. Surely we should be able to do that? -------- TITLE: An unexpectedly challenging visit CATEGORY: Winston Churchill Travel Fellowship CATEGORY: CE, CP, Learning, Neuroscience DATE: 07/29/2007 10:07:13 PM From the outset, as I reported here, conversations with many people met during this Fellowship, I should have made repeatedly clear that thoughts and opinions expressed are my recollections only of our conversations, for which those who gave so kindly of their time are in no way responsible. This blog entry, and those that precede it, are not 'minutes' of meetings. Indeed, I deliberately took no notes of the many conversations preferring to avoid the intrusion and distraction of recorders, or even simple pen and paper notetaking. My aim throughout has been to absorb and reflect and draw general 'lessons' for Paces. The Visioning document The story CEO Stephen Bennett told me of how United Cerebral Palsy came to work with the Institute for the Future14, (ITFI) one of the leading 'think-tanks' in the USA, to produce a Visioning document is a tale worth telling that this brief blog entry will not allow. Sufficient to say that, like Paces and most charities, UCP thought it a pretty neat move to be into strategic planning; only to find ITFI regarded strategic planning several rungs down the ladder 13 www.med.unc.edu/ahs/physical/actnow.html 14 http://www.iftf.org/index.html

from Visioning. The output, in one of its forms, is a startling 4' by 12' wall display, a Vision, not for UCP nor even of 'disability', but a Vision of the world context in which UCP would be operating down road 10 years. Out of this came the notion, not of “Problems” that lead to identified “solutions, nor even, as I was expecting Stephen to say, of “Opportunities” to be grasped. Instead, the Vision incorporates “Dilemmas” that need to be managed, charting a strategic course amongst and through irreconcilables. In making available to me and to Paces, the Vision document in its leaflet form, Stephen has made available to us the work of one of America’s leading think tanks. The Virtual Conference Prompted by Stephen’s express tour (normally three hours) through the UCP Vision document (especially “Tools” one of the six Headline Stories around which the Vision document is structured), my first thought was of video-link up for Stephen to present this document to our Annual Conference 2008. My next thought was to wonder whether: we might organise a virtual conference, with a real-world Sheffield audience; or might this be wholly online, all participants being joined up through their laptops; perhaps with new inputs from individuals spread over several days, with an ongoing discussion Forum; whether there were in Sheffield the skills sets to make this happen? Private sector From the outset, UCP went to the private sector for advice on how to conduct effective strategic planning; they went to the private sector for financial support to fund the Visioning programme; the American Association of Disabled Peoples15, whose celebration16 of the anniversary of the passing of the Americans with Disabilities Act17 at Capitol Hill we went to as Stephen’s guests; the AADP went to the private sector for its support in making inclusion real, mainly because it makes business sense (as Dr Christine Bellamy also said at the recent inclusion workshop in Sheffield). Appropriately scaled, there is no reason Paces should not do something similar in Sheffield/South Yorkshire as part of the new Strategic Plan. David Body, as Chair of Trustees, is already heading Paces in this direction. Cerebral Palsy is not measles I forget the phrase Stephen used about the phrase “cerebral palsy”. But it was clear that he felt it was in many contexts largely valueless. An English phrase that comes to mind that he might have used (but didn’t) is “rag bag”. I have read something similar in my research on the internet: that cerebral palsy is merely an administratively convenient term with little other value: certainly, it is not a diagnosis. Andrew Sutton, I recall, most frequently refers to “the cerebral palsies”. Often enough, I have myself said cerebral palsy is not measles; it is not a thing. Emily Dolenz of UCP said something similar. I asked her, as a person with right-sided spastic hemiplegia, how she regarded cerebral palsy. She initially responded with the common observation that everyone with cerebral palsy is different and quickly followed this with the thought that it was therefore impossible to develop one-size-fits-all cerebral palsy services. (This seems to me to lead to one of UCP’s dilemmas: if on the one hand we strive for inclusion, how can we possibly train and provide the 1:1 specialists required by every child with CP, if every child is different? But that is another story.) I offered Emily the thought that if cerebral palsy was not a useful term, one moreover that derived from and was deeply embedded in a medical context, would it be better to adopt some such term as neurocognitive impairment. She herself seemed happy with the phrase brain

15 http://www.aapd-dc.org 16 http://www.aapd-dc.org/News/aapd/pr070726aapd.htm 17 www.usdoj.gov/crt/ada/adahom1.htm

damage which, when explaining to others, she said that she likened to having a stroke before birth. She then said something that startled me (though on reflection it should not have) and that was that her mother had been told that her stroke occurred (I think she said) when her mother was only four months pregnant; that her brain therefore had a further 5 months to develop and mitigate the effects of the stroke. From my researches prior to and also as part of my preparation for this Study Tour, I have become familiar with brain plasticity post-birth and throughout life. I had not considered that, of course, the growing brain is equally plastic in the months leading up to birth. This startling notion opens a whole new set of questions relating whether cerebral palsy is unhelpful as a label for what is a neurological or neurocognitive impairment and therefore of the importance of structured learning, especially in those cases where the stroke is more severe or later in pregnancy, or both. Here is much to ponder on. -------- TITLE: Pessimist-Optimist CATEGORY: Winston Churchill Travel Fellowship DATE: 07/30/2007 10:18:05 PM “The pessimist sees difficulty in every opportunity. The optimist sees opportunity in every difficulty.” Winston Churchill. Having completed, at a particularly difficult time for Paces, my monthly report to Trustees, the then Chair of Trustees asked me for my general view. “OK”, I replied. “OK?” he responded (jokingly, I should add): “When things were dire, desperate and bloody suicidal, you said they were 'good'. What sort of state are we in if you say things are only OK?” I'm happy to be an optimist according to Churchill's definition. How apt, as I return to Paces having completed the first leg of my Study Tour, funded by the Winston Churchill Memorial Trust. -------- TITLE: Nice to travel ... so much nicer to come home CATEGORY: Winston Churchill Travel Fellowship DATE: 08/21/2007 08:42:27 PM And so, the 6th World Congress of Conductive Education draws to a close with tomorrow morning's session, and with it my Winston Churchill Travel Fellowship. Both will require time for reflection on what I have seen and heard. However, I was struck here in Goteburg, as never before in a Conductive Education Congress, of the number of contributors and delegates from professions other than CE, and of how much higher is the number of people working in multi-disciplinary or trans-disciplinary settings, in at least one case, the Conductor in the team not having a lead role. As CE spreads world-wide it will no doubt, sometimes temporarily, sometimes more permanently, take on many, sometimes strange, shapes. Sometimes, no doubt, those stranger shapes may have little connection with CE as Peto or Hari would recognise it. That is the reality; or one reality. Another, different, alternative reality is to question the need for these shapes: why, for instance, do we need the increasingly common, apparently, multi-disciplinary or trans-disciplinary teams? One answer, in Hong Kong, for instance, is that there are no conductors. It's true: there simply aren't enough Conductors to go round. Another answer might be that these 'professions ancilliary to medicine' that make-up the membership of these 'teams' pre-exist CE and so want a piece of the action as the price for admitting CE to the therapeutic feast (that's assuming we agree CE is a therapy of course. Another day: another debate). Such a view (perhaps too cynical/realist, for some tastes,) does not preclude the fine work of those who approach CE via physical therapy, occupational therapy or communication therapy; nor does it preclude the fine work multi-disciplinary or trans-disciplinary teams might do. Yet, for some, it does raise the question as to whether what is happening in such teams is actually “Conductive Education” as Peto or Hari would recognise it, despite the claims of some to be 'applying the principles of conductive education'.

So, as Conductive Education enjoys its travels around the world, it is nevertheless good to be reminded by Congresses such as these, that, as the song has it, it's 'so much nicer to come home' and to be reminded why we set out on the journey in the first place: to listen to those speakers, meet those colleagues, who talk of a practice and a system that is recognisably Conductive Education. To everyone, I would say thank you for coming together to share your work; to these last ones, however, I am especially grateful; just as I am to the Winston Churchill Memorial Trust for making possible my journey this past 6 weeks.

PRACTICE. RESEARCH. POLICY -------- TITLE: So no different then? Why worry? CATEGORY: CE, CP, Learning, Neuroscience DATE: 07/28/2007 02:16:57 AM As I was writing up visit notes and checking details online, I came across this recent research report from the University of Newcastle, reported in The Lancet, the opening of which is quoted below. I need to consider it further and, if possible, obtain the full research report. It strikes me as complacent, though I am not yet sure why. Take a look, and see what you think. “Children with Cerebral Palsy have similar quality of life to other children. Date released 29 June 2007 Most children aged 8-12 years with cerebral palsy will have similar quality of life to other children according to an article published in this week's edition of The Lancet.” By the way, BBC news online reported this under the wonderful headline18: “Cerebral palsy children 'happy'”. Their opening paragraph reads “Children with cerebral palsy are just as happy as children without the condition are, a study has shown.” So that's alright. Nothing to worry about there, then. -------- TITLE: Parallel Worlds CATEGORY: CE, CP, Learning, Neuroscience DATE: 08/01/2007 09:19:54 PM There's not much in common, is there, between life with cerebral palsy and life as a busy trader on the financial markets? No? Then read this: “We cannot experience ourselves as dynamic and energetic if we exert little dynamism and energy. Exercise provides us with our most immediate, physical sense of self”. Better still, read Brett Steenbarger's whole blog posting19. I've no idea what the evidence for his assertion is, but it seems plausible to me. As it perhaps did to the Roman poet Juvenal: “Mens sana in corpore sano”.20 But how do busy traders and adults with cerebral palsy achieve such a healthy balance in their mode and quality of life? Pondering the answer to such a question is not unrelated to the Project Act Now study being undertaken by Debbie Thorpe whom I visited at the University of North Carolina in Chapel Hill. And Brett Steenbarger's whole blog posting, setting out “a very healthy attitude to life, lifelong brain plasticity, brain health, and success” is not a million miles from “neuroplasticity and cognitive and emotional (health)” as the people at SharpBrains very nearly observed21. Actually, another of his observations in the same posting: “By setting do-able goals, identifying and expanding strengths, and receiving feedback from others, we internalize a growing sense of mastery”, seems remarkably close to how Dr Maria Hari22 once characterised conductive education as being about “enhancing the quality of intention to achieve”. (Apologies - I do not have the reference to hand.) -------- TITLE: A New Conductive Community

18 http://news.bbc.co.uk/1/hi/health/6248332.stm 19 http://traderfeed.blogspot.com/2007/07/when-traders-lose-confidence-part-three.html 20 http://en.wikipedia.org/wiki/Mens_sana_in_corpore_sano 21 http://www.sharpbrains.com/blog/2007/07/30/neuroplasticity-lifelong-learning 22 http://www.guardian.co.uk/obituaries/story/0,3604,579662,00.html

CATEGORY: CE, CP, Learning, Neuroscience DATE: 08/04/2007 09:27:30 PM For many years, the only comprehensive conductive education website has been that of the Foundation for Conductive Education23 in Birmingham UK. Its Forum24 has been a compelling focus for all with an interest in discussing matters in conductive education. We have indeed reason to be grateful to those at the Foundation who have maintained the site and monitored the site's Forum. However, it is not the vibrant place it once was. Now there is a new “Forum”: a new “Conductive Community”25. My first response, therefore, to reading of a new “Forum” was a deep concern about the possible fracturing of the CE community - rival websites, and all that might bring. However, on reflection, I welcome the initiative, especially after reading the “open letter to the Conductive Community regarding the establishment of the Conductive Community website” from its founder Elliot Clifton. The Foundation's Forum, in my view, has a number of problems: the most serious of which is that the Forum has almost ceased to have any credible intellectual standing, either in the quality of topics raised for discussion or in the language and attitude in the quality of postings. Having just returned from three weeks in America, that took me to Vancouver, Seattle, San Francisco, Chapel Hill in North Carolina and Washington thanks to the Travel Fellowship funded by the Winston Churchill Memorial Trust, and finding everywhere I went people keen to engage in courteous, professional and challenging discussions, returning to the Foundation's Forum was a disappointment; some contributors seem content with unpleasantness (long a problem) and the low level of topics and discussion. Actually, what quickly persuaded me that a new conductive education community online was worth attempting was Elliot's claim: “I take my inspiration from the success the open source software and open content movements have had in building web-based communities to share knowledge and develop collaborative projects.” Elliot's interest mirrors my own: I have myself become increasingly convinced of the value of building virtual social networks and collaborations. I have experimented at Paces with using wikis to write funding applications and draft strategic plans - with some success, although it is requiring a greater commitment to training of collaborators than I expected. I am also experimenting with this blog - trying to work out what I want to use it for as CEO at Paces. I did not at all want to simply write a blog diary. I did want to communicate some of the thinking that I have exposed myself to, and share this with Paces' People, as well as anyone else who cared to be interested. I wanted it to be an exploration of ideas: around 'cerebral palsy', recent research in cognitive neuroscience, on being a charity CEO and - for the moment - thoughts arising from my Fellowship. Like Elliot, I am inspired by the potential of networks and collaborations to support and advance conductive education and have some projects - though not his technical skills - that I would like to implement. I am also inspired by my wife who is part of the team at The Sheffield College responsible for developing the multi-award-winning GCSE and A level English courses online and who are now developing an eCommunications Foundation degree course26 with Sheffield Hallam University, which has involved her in close engagement with open source and web2.0 initiatives and tools - some of which has rubbed off on me. Then there is the Visioning undertaken as part of UCP's “Big Sky Project”,27 which I will return to in another posting. So it's 'wait and see' time. Elliot's new “Conductive Community” has been launched at the quietest point of the academic year, and there's not much yet for the visitor to engage with.

23 http://www.conductive-education.org.uk/2007/index.htm 24 http://nexwebsites.com/cgi-bin/mbview.cgi?site=NICEForum. Currently offline. 25 “ http://conductive-community.com. Currently disappointingly inactive. 26 http://www.sheffcol.ac.uk/index.cfm?ID=813c0c00-67f9-4663-b8b4-9a756f31050c, 27 “ http://www.ucp.org/ucp_general.cfm/1/16243

Take a look; tag the new site on del.icio.us28 -------- TITLE: CP - an old-fashioned label? CATEGORY: CE, CP, Learning, Neuroscience DATE: 08/04/2007 10:39:26 PM Should we dispense with the term “cerebral palsy”? It is a question I keep coming back to. Listen to three different voices: In an article that first appeared earlier this year in the Parliamentary Monitor (April 2007) entitled “The very special needs of children with cerebral palsy”, Jim Ferris CEO of the Percy Hedley Foundation had this to say29: “Even today, typical definitions of cerebral palsy say something like “cerebral palsy is a non-progressive disorder of movement or posture due to a malfunction or damage of the brain”. Definitions go on to describe physical aspects and talk about other “associated” difficulties There is the danger that the child with cerebral palsy is considered physically disabled with learning or other associated difficulties. It is vital that we think of cerebral palsy as a neurological condition which can impact on the whole of a child's development. It is equally important that we consider development as an integrated process where one difficulty will almost certainly impact on another.” Secondly, on the website of the Institutes for the Achievement of Human Potential30 (not an organization of which I otherwise approve), the term “cerebral palsy” is quickly disposed of: “The most common term used to describe children with mobility problems is “cerebral palsy.” “Cerebral palsy” is not a diagnosis but rather a description of a certain type of brain-injured child. The children who are given this label are primarily injured in the subcortical areas of the brain. .... Using symptoms in place of a proper diagnosis often leads to the attempt to treat those symptoms. This does not work. .... Old-fashioned labels like “cerebral palsy” are not found in the literature of The Institutes, but rather the term “brain-injured.”” Thirdly, it has long interested me that Cerebra31 on its website takes a broad view that that has something in common with the two perspectives above: “Every year in the UK there are approximately 650,000 new babies born and The Decade of the Brain research suggests that one in four will, at some point in their life, develop a neurological problem. These problems manifest themselves in conditions such as cerebral palsy, epilepsy, learning difficulties, attention deficit, behavioural and emotional problems or developmental delay. In the UK it is known that one in forty children is severely disabled for life.” -------- TITLE: Intelligence and Cerebral Palsy CATEGORY: CE, CP, Learning, Neuroscience DATE: 08/18/2007 07:52:22 AM I have just read a most remarkable sentence. You can check the context - a book summary - for yourself32: “Characteristics of cerebral palsy are described, and it is pointed out that most children with this affliction have average or above average intelligence.” 28 http://del.icio.us 29 http://www.percyhedley.org.uk/speaksout/specialneeds.asp 30 http://www.iahp.org/Articles-about-Cerebral-Palsy.310.0.html 31 http://www.cerebra.org.uk/AboutUs/Introduction.htm 32http://www.eric.ed.gov/ERICWebPortal/custom/portlets/recordDetails/detailmini.jsp?_nfpb=true&_&ERICExtSearch_SearchValue_0=ED235167&ERICExtSearch_SearchType_0=eric_accno&accno=ED235167

Is it true? Can it be true? What if it is true? However, I am concerned about the logic of the sentence. I'm uncomfortably reminded of those populist politicians who make wonderfully nonsensical statements about wanting most children to score above average on national tests. I shall have to do some thinking. I shall start by wondering: where is the evidence. I may have to acquire the book. BTW I am always sceptical of the level of understanding and sensitivity, not to say intellect, of people who still regard disability as an “affliction” “Suffers from” is a common variant. Glenda Watson-Hyatt's weblog33 is a useful corrective. BTW2. I am tempted to suggest that if we allow for the moment that intelligence in persons with CP follows a curve of normal distribution, (and there is no certainty of that, as far as I am aware) then it might just as accurately have been stated that "most children with CP have average or below average intelligence". Neither statement offers much in the way of meaning or value to any discourse on cerebral palsy and the education of children with cerebral palsy. -------- TITLE: Integrated and harmonious CATEGORY: CE, CP, Learning, Neuroscience DATE: 08/23/2007 10:56:17 AM As I was writing the most recent posting to this blog, a distant echo was tickling my memory of something said by Andrew Sutton, former Director of the National Institute for Conductive Education in Birmingham, England34. This afternoon I located the source of the tickle in a paper (unpublished, I believe, but available I expect from the National Institute Library35, based upon an informal presentation Andrew made to the conference “Children’s Trusts: Transforming Futures” held at the Institute of Directors, Pall Mall, London, on 10th March 2005, co-hosted by Paces and the National Institute and sponsored by Irwin Mitchell36. The paper is entitled “Joining up to the joined up agenda: What can the conductive movement offer the joined-up children’s agenda?” Andrew states, correctly, as every Conductor would agree: “Children with difficulties of movement experience difficulties in integrating their experiences and what they learn from them into a harmonious whole.” He then asserts, again correctly, the importance of specialist assistance: “the experience and learning of children with motor disorders and their families may remain fragmented, difficult or impossible for them and their parents to fit together as do their non-disabled peers without specialist help”. So far, so good. Perhaps not many would find either of these two preceding statements contentious. But then this, a statement worth taking our time over, having read once, to read again and read slowly: “But what specialist help do we presently provide (not just in the United Kingdom, but in most developed countries)? Not a service designed a priori and systemically to match their particular developmental needs but an ad hoc assembly of different professional structures, each developed originally for other purposes and each delivered by different professionals working to the requirements of their own philosophies, timetables and priorities.” If we are in any doubt, Andrew follows on, saying: “Even were everything that these

33 http://www.doitmyselfblog.com 34 http://www.conductive-education.org.uk/2007 35 http://www.conductive-education.org.uk/2007/CE%20nationalLibrary.htm 36 http://www.irwinmitchell.com

professionals do within their own professional roles specifically geared to advancing the child’s development and the family’s functioning, even were all these professionals working towards common goals according to a common theoretical understanding, then the children and their families would still be confronted with services that themselves constitute a fragmented and disharmonious experience.” (The emphases are mine.) Since the dominating introduction of the “Every Child Matters” agenda into UK public services for children and young people, and the consequent restructuring of public education, health and care services to encourage “joined up working” (ie integration and harmony) between the previously disparate professionals involved, we have heard much - as much in Sheffield as elsewhere in the UK - of “multidisciplinary” service delivery teams, and behind them “multi-disciplinary” service planning panels. It is an observation so simple as to be self-evident that the first and most difficult task of such “multi-disciplinary” teams is to weld themselves into an integrated and harmonious whole: a task, I suspect, and as Andrew implies, to be impossible, and that even were it possible, such a service would still be experienced by parents and their children as “fragmented and disharmonious”. I have already observed that I have become very aware at this 6th World Congress of Conductive Education, how many more, including Conductors, seem to be working in “multi-disciplinary” or “trans-disciplinary” teams. We can dispute whether or not this is a “good thing”. That is not my purpose here. My purpose here is to follow Andrew's thoughts in his 2005 paper and contrast the multi- or trans-disciplinary models with the model offered by Conductive Education, in which “... children’s development and their families desire to enhance this are served by a single professional worker, the conductor, who teaches and advises on the totality of the child’s upbringing and education, through a unitary theoretical perspective channeled at given points in a child’s learning through a single professional.” He continues: ”Conductive Education’s practical and theoretical contribution present aspirations for joined-up services as a service model specifically designed to respond to a specified range of human issues, and provided predominantly through the uni-disciplinary agency of a conductor of development, who can of course, consult, link to, call in and mediate with other professionals should specific need arise.” (My emphases). To counter the reality of continuing 'fragmentation and disharmony', Andrew offers a solution: “From this perspective, the next obvious step for serious consideration is provision of professionals and professional services specifically designed for specific jobs, not jobs for already existing professionals and already existing professional structures.” For this, Conductive Education offers one possible - tested and effective - model of a unified, uni-professional approach. “So what then is this model? It comprises a unitary service provided for a coherent, definable range of developmental problems, staffed and oriented through common training, goals and values; it offers a one-stop reference point for children and adults with movement disabilities across the life-span, and their families yet remains able to call in and mediate with other professions and agencies. In service and in training Conductive Education manifests a unity of philosophy, methods and organisation directed to effecting change in development and function.” Finally, Andrew points to a remarkable (to me anyway) historical precedent. Now nearly 40 years ago, in 1970, the influential Younghusband Report, concluded its chapter on the training, supply and employment of staff by making 4 observations on improving practice, three of which were essentially seeking to improve the functioning of “multi-disciplinary collaboration”; the fourth was different and new, a call for 'hybrid' training, for which Younghusband's model was conductive education: “Unfortunately it often happens that a spastic child, for example, has to leave his classroom on successive occasions to receive speech therapy, physiotherapy or occupational therapy. Many workers in these professions recognise that there is something unsatisfactory in this situation.

We have been interested to learn of experiments being carried out in this country on the Peto method of treating cerebral palsied children, which originated in Hungary. In this method, called conductive education physical training, social training, speech therapy and education are carried out by the same person, who naturally has to receive a long course of training.” (My emphasis). From Younghusband's 'hybrid' training, it is a short logical next step to a 'hybrid' or uni-professional; a sub-specialism of whom would work with children with motor disorders We might call them “Conductors”. -------- TITLE: What is the difference between therapy and teaching? CATEGORY: CE, CP, Learning, Neuroscience DATE: 09/22/2007 10:37:12 AM On the PMLD Network Forum37 Peter Limbrick from Interconnections38 posted a most interesting question. He wrote: “A young child with visual disability will be helped by a visual impairment teacher. If there are hearing problems, there will be a hearing impairment teacher. For a child who needs help with movement and posture there will be a physiotherapist. For speech, language and communication support there will be a speech and language therapist. Some children require all of these as early intervention. My question is: Why is helping a child learn to visually track a toy, or to match sounds to objects considered to be 'teaching', while helping a child learn to sit or roll or use a sign to ask for a drink considered to be 'therapy'? In this context, what is 'teaching' and what is 'therapy'? Does the distinction have any meaning or value, or is it just another way to confuse parents - and the rest of us?” Peter’s question about the distinction between therapy and teaching has intrigued me. It is an important question. I cannot say I have an answer for Peter. However, the following are some of my reflections. 1. Therapy is what therapists do; teaching is what teachers do. A simple even silly - statement but pointing to a larger fact that the practitioners and the practice exist in separate professional worlds. These sometimes overlap and, in the experience of parents and service users, seem at times to do similar things when it comes to service delivery. The separation of these two worlds might be evidenced in the current fashion for and difficulties in achieving joined up services at strategic, resource and management levels. 2. Meanings of words exist as much in lexical sets as in individual dictionary definitions. We can test the different lexical sets of these words by asking ourselves what first comes to mind when we hear the words therapy and teaching. Therapy would seem to be a word firmly from a medical or health lexical set whilst teaching belongs in an educational set 3. Does the observation that therapists are professions ancillary to medicine whereas teachers are not ancillary to education tell us anything about the difference between therapy and teaching? 4. Is there a relevant difference of time-frame? Although some people can receive therapy for years, therapy is mostly associated with the comparatively short-term whereas teaching, especially as far as children are concerned, can now extend from early years to the end of further or higher education. 37 http://www.pmldnetwork.org, 38 www.icwhatsnew.com

5. Might there be a difference in purpose? Could the purpose of therapy be summarised as individual wellbeing or health whereas that of teaching is up-bringing (or, in a perhaps old-fashioned academic term, socialisation)? It comes to mind that the lexical sets around therapy might include words like ‘intervention’ and ‘rehabilitation’, words not usually found with teaching, pointing to different purposes. Peter’s choice of examples is interesting and points to further speculation about differences. 6. Could the difference between therapists and teachers be mainly one of western culture, history and society (1)? The current fashion for multi-disciplinary service teams simply underscores the fact that there are multi-professions. Is it possible to imagine a uni-discipinary professional? Over 35 years ago, the Younghusband Report (Living with Handicap: the report of a working party on children with special needs. 1970) seemed to envisage as much in its proposal for hybrid training courses. Conductive Education offers such a single-profession model in the profession of the Conductor. As an aside, for parents of disabled children, dealing with a single professional instead of the very many professionals that some parents now manage, the advantages should be self-evident. 7. Could the difference between therapists and teachers be mainly one of western culture, history and society (2)? Peter rightly points out that in the case of the young child with a visual disability or hearing problem there will be a teacher, whereas for a child who needs help with movement and posture there will be a physiotherapist. Is it not the case that whereas we provide specialist initial teacher training for those who would teach children with sensory impairments, we do not do so for those who would teach children motor disabilities nor even other disabilities? In other words, the physiotherapist is the first trained option our society offers, even in the classroom? Why did we decide to abandon specialist training for most teachers of children with disabilities and is it still right that we do not do so? This question was approached but not fully addressed in the House of Commons Education and Skills Committee on special education needs, chaired by Barry Shearman MP which reported in 2006. I am indebted to Dr Andrew Sutton for the origin of thoughts 6 and 7 - though Andrew cannot be blamed for the wording here, which is down to me. 8. I will add one further thought with something of a wry smile. As an example, Peter chooses the child who needs help with movement and posture for whom there will be a physiotherapist. If the child’s movement and posture problems derive from a neuromotor disorder such as cerebral palsy, Conductive Education asserts that there is a problem of teaching. Finally: After two decades of pioneering work in brain research, the education community has started to realise that understanding the brain can help to open new pathways to improve educational research, policies and practice: “This calls for holistic approaches which recognise the close interdependence of physical and intellectual well-being and the close interplay of the emotional and cognitive39”. -------- TITLE: Exercise builds strong brains (for children with CP) CATEGORY: CE, CP, Learning, Neuroscience DATE: 11/14/2007 06:38:11 AM To be filed under the general heading of “So how does this apply to children with motor disorders such as cerebral palsy?”: 39 (Understanding the Brain: The Birth of a Learning Science. Organisation for Economic Co-operation and Development. Centre for Educational Research and Innovation. July 2007.

Another study, this one presented by Catherine Davis, an associate professor of pediatrics at the Medical College of Georgia in Augusta, has concluded that “children who play vigorously for 20 to 40 minutes a day may be better able to organize schoolwork, do class projects and learn mathematics”40. Without entirely resolving my own thoughts towards practical implementations at Paces and in Sheffield, I keep coming back to this as an important issue in the education of children with motor disorders. If exercise is so important to brain activity and academic performance in children without motor disorders, such that Catherine Davis can state “School systems need to know that to reach their achievement targets, they need to add physical activity to the school day rather than reduce it” then what are the pedagogic and curricular implications for children with motor disorders? What are the implications for early learning in the UK's “Childrens' Centres”? What are the implications for workforce training, for all who work with children and adults with motor disorders who cannot organise their own exercise programmes? Footnote:The same applies to adults with motor disorders. The awful image that keeps coming to this Dad's mind is of adults in care homes slumped in wheelchairs, dumped in front of televisions or the budgie cage, minds switched off. Is this the future for my daughter in her old age when her mother and I can no longer care for her? Debbie Thorpe's research study, Project ACT NOW, that I good the fortune to visit in July, might help build the evidence base that physical activity is as important to the well-being of adults with motor disorders as it is in children - and that there are public policy, training and service delivery implications for adults in care just as much as for schoolchildren and babies. I wonder where policy and practice is starting to change? (The research was reported in USA Today41 and then picked up on the SharpBrains website in “a collection of recent news coverage on brain heath, fitness and training topics42”.) -------- TITLE: Exercise Training Program Benefits Children With Cerebral Palsy CATEGORY: CE, CP, Learning, Neuroscience DATE: 11/14/2007 07:07:27 PM Coincidentally with my earlier posting, “Exercise Builds Strong Brains”, this evening I came across a report43 published 13 November 2007: “An exercise training program improves physical fitness, participation level, and quality of life in children with cerebral palsy when added to standard care,” the study authors write. “Limited exercise and sport opportunities in their neighborhoods might impede transfer of the gains in fitness into extra participation in regular physical activities. Supervised training programs at schools or in the community might provide fitness training for children and adolescents with CP.” I note the benefit is from an exercise training programme and not just exercise and that lack of local opportunities might be a barrier to benefits. More pointers towards what is needed in public provision, maybe. -------- TITLE: Suffering under the delusion that things can be done CATEGORY: CE, CP, Learning, Neuroscience

40 http://www.usatoday.com/news/health/2007-10-29-exercise-brains_N.htm 41 http://www.usatoday.com 42 http://www.sharpbrains.com/blog/2007/11/13/brain-and-mind-news-and-articles 43 http://www.medscape.com/viewarticle/565756?src=rss

DATE: 11/27/2007 08:49:43 PM “Norman is not working to his potential” (or variants that flowed through my school reports). ”We want every child to reach his or her potential” (or variants of all purpose apolitical party tosh). Sentiments like this are common in the phrase book handed out to teachers, educationalists and politicians; the notion that potential is some fixed entity within the child and not a dynamic that grows in the interaction of the child with its environment. It's interesting how this polarity re-occurs. This first example from an interview44 with Carol Dweck, professor of Psychology at Stanford University, “a leading expert in the field of human motivation and intelligence”: “In my book (Mindset: The New Psychology of Success) I identify two mindsets that play important roles in people's success. In one, the fixed mindset, people believe that their talents and abilities are fixed traits. They have a certain amount and that's that; nothing can be done to change it ..... In the other mindset, the growth mindset, people believe that their talents and abilities can be developed through passion, education, and persistence. For them, it's not about looking smart or grooming their image. It's about a commitment to learning - taking informed risks and learning from the results, surrounding yourself with people who will challenge you to grow, looking frankly at your deficiencies and seeking to remedy them. Most great business leaders have had this mindset, because building and maintaining excellent organizations in the face of constant change requires it.” This second example from long ago, so long ago that I suspect it predates the Sunday Times Online archives, where in one Sunday's edition I read a report of an interview with Susan Scott-Parker, CEO and founder of the Employers' Forum on Disability45. (At least, my memory tells me it was with her - if I'm wrong I can only apologise - but its an instructive story anyway and I'd still love to meet her!) The report began by saying that, a Canadian, she took a senior post with the British civil service; that at her first appraisal it was said that she was an excellent civil servant except that “she suffered under the delusion that things could be done”. Like Susan Scott-Parker, (and Yoshi Tanabe and Glenda Watson-Hyatt in Vancouver), I too suffer under the same delusion; that things can be done; that potential is dynamic; that “talents and abilities can be developed through “passion, education and persistence” - traits which in the corner of the educational world I inhabit I collectively call “conductive education”. Why, as a parent and CEO of a third sector enterprise, does it so often feel that we are in a minority, “suffering under the delusion” that change in services for those with disabilities and their families is not only possible but that it is essential? -------- TITLE: Not fully human - not able to learn well enough CATEGORY: CE, CP, Learning, Neuroscience DATE: 12/03/2007 08:09:01 PM The findings of neuroscience into how the brain develops are beginning to seep into mainstream media. An example46 from The Sunday Times, 2 December 2007 from 'Guest Contributor' Eleanor Mills. I shall quote at length from her middle section: “Neuroscience shows that emotional experiences in infancy have a measurable effect on how we develop as human beings; our earliest experiences of social interaction are translated into precise physiological patterns of response in the brain that then set the neurological rules for how we deal with our feelings and those of other people for the rest of our lives.

44 http://www-psych.stanford.edu/~dweck 45 http://www.employers-forum.co.uk/www/index.htm 46 http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article2982765.ece

It is all down to the hormone called cortisol. When a baby is upset, the hypothalamus at the centre of the brain produces cortisol. In normal amounts that is fine, but if a baby is exposed for too long or too often to stressful situations its brain becomes flooded with cortisol, and it will then either over- or under-produce cortisol whenever the child is exposed to stress. Too much is linked to depression and fearfulness; too little to emotional detachment and aggression. Babies can’t regulate their stress response on their own; they learn to do so by the reaction of their carer when they are upset. When the baby’s needs are met, the brain learns to produce only beneficial levels of cortisol. What the science shows is that good parenting isn’t just nice for small children; it actually leads to proper development of the baby’s prefrontal cortex, which in turn enables the child to develop self-control and empathy and to feel connected to others. I have always been haunted by those Romanian orphans, left alone to cry in their cots from birth with no mummy to love them. Well, when scientists studied their brains, they found a virtual black hole where the orbitofrontal cortex should have been (this is the part of the brain that enables us to manage our emotions, to empathise with others, to experience pleasure and appreciate beauty). Turns out that I was right to be haunted: the lack of love had inhibited their capacity to be fully human. The point about my mini brain science lecture is that there is no point in taking kids who have been appallingly badly parented whose brains haven’t been programmed right, because their needs haven’t been met and expecting that they will be able to absorb the kind of education-based nursery curriculum that the government has in mind. One psychologist told me that it’s like pouring water into a bucket with no bottom. The maths and phonics won’t stick. The brains of these very deprived children are simply not chemically wired well enough to be able to learn.” The writer is criticising the Government's proposed curriculum for 3-4 year olds, that The Times made its front page feature earlier in the week under the headline “Stealth curriculum is 'threat to all toddlers47”. If it is true that “love matters” in the development of infant brains, and all that I have been able to read of recent research says it is, and if it is also true, as I believe it is from my observations as a granddad to four grandchildren, that the physical and sensory interaction of the child with its environment, especially with its mother but also other family members, is the key medium through which 'love matters' is expressed - my question, yet again, is what happens in the growing infant brain of a child with cerebral palsy that maybe cannot manage the physical and sensory interaction with its environment and its mother, especially when the mother, father and other family members are themselves coming to terms with having a, possibly seriously, disabled child? Referring to Romanian orphans, two phrases that Eleanor Mills employs chill me: “the lack of love had inhibited their capacity to be fully human” and “The brains of these very deprived children are simply not chemically wired well enough to be able to learn.” Try that again: not “fully human”, not “able to learn” well enough. To understand that educational policy needs to be evidence-based and that neuroscience is increasingly generating that evidence is fine. To oppose the Government's plans for 3-4 year olds for the lack of an evidence base is also fine. However, to then somehow conclude that there are children who are less than “fully human” and “not chemically wired well enough to be able to learn” is not only an intellectual place to which I prefer not to follow the writer 47 http://www.timesonline.co.uk/tol/life_and_style/education/article2971600.ece

when it comes to children with severe disabilities, it is also, as I understand the evidence, a misunderstanding of the neuroscientific evidence of brain plasticity throughout life and contradicts a truly human understanding of human potential, that is dynamic and not fixed. Deprived or disabled , these children deserve better. “Better” might include alternatives and choices that the Government appears not to conceive of, insisting that all nursery environments, whether public, private or voluntary will conform to its model of child development. Montessori and Steiner offer two such alternative developmental models on which nursery education is founded. For children with cerebral palsy, conductive education offers another choice. How much harder it is going to be to ensure parents have these choices, when officers in Children and Young People Directorates across the country are busy asserting that 'one size fits all''? What price then, evidence-based public policy? What price then, parental choice? And where does that leave children with cerebral palsy and their families in the new Children's Centres? Better off than now, or not? -------- TITLE: Mind Brain Education CATEGORY: CE, CP, Learning, Neuroscience DATE: 12/20/2007 10:43:12 PM I read to day (“Trouble in Toytown,” The Times) that “the first journal in the field of the application of brain science to education was inaugurated in March48” of this year. I was mildly surprised at the claim but set out to see if I could track it down. It might be “Mind, Brain, Education49” published by IMBES, the International Mind, Brain and Education Society. The new journal complements a newsletter first published in January 2006. Both the journal and the newsletter are available online, free, via the links above. If anyone is aware of another journal explicitly linking neuroscience and education, I'd be pleased to learn of it. Whilst tracking down the journal, I came across the “Learning and the Brain Society50”, “an online academic community to enhance learning and teaching”, that is promoting two conferences in 2008 (Feb. San Francisco; April, Cambridge MA. Their website still has a link to the recent November 2007 IMBES conference, too. -------- TITLE: Shay Allias CATEGORY: CE, CP, Learning, Neuroscience DATE: 12/27/2007 04:05:52 PM An inspiration51. Take a look for yourself. Andrew Sutton describes this YouTube video as “one of the best personal expositions that I’ve seen arguing both the necessity for and the effectiveness of a conductive upbringing.” -------- TITLE: Pirate on the beach CATEGORY: CE, CP, Learning, Neuroscience DATE: 02/07/2008 06:05:05 AM While England were building up a half-time lead against Wales, Maisie and Billy sailed their pirate ship across the seven seas. They captured treasure ships and rode out great storms until they came to a tropical island. The sun shone high in the sky over a beach with glistening white sand. Maisie started to pull her socks off. “Maisie! Maisie!” cried the pirate captain, her

48 http://women.timesonline.co.uk/tol/life_and_style/women/families/article3074019.ece. 49 http://www.imbes.org/journal.html 50 http://www.edupr.com 51 http://www.youtube.com/user/tsadkad

grandmother, fearing she'd catch a chill, as 2-year old pirate Maisie had had a stomach bug all week and not managed to keep her food down “What are you doing? Why are you taking your socks off?” “I'm going for a walk on the beach” said Maisie. And with that she leapt out of the pirate ship into the calm, shallow waters of the living room carpet and stomped up and down the white sands, between the easy chair where Grandad was asleep, one eye half open, and Auntie Sarah in her wheelchair. There was a sequel. Three days later, long after the adult world knew how the second half of the rugby international turned out, Maisie ran up to her Mum and said, quite out of nothing in particular, “When we go on our holiday, I really am going to walk on the beach.” I have marvelled before at the sheer physical energy that my grandchildren put into their play and how utterly the imagination of the play is real to them, absorbing them completely. Actually, the day Wales embarrassed England in their first match of the Six Nations, it was Billy's fourth birthday. He'd no sooner opened the box with his new football boots in (with real screw-in studs), torn the wrapping from white socks, blue shorts and blue shirt, than he was stripped naked, scrumming to get his new kit on, grabbing his new ball and sprinting out for the back garden stadium, oblivious to the cold wind and the different rugby and soccer codes, shouting while waving at the uprights of his swing, “Grandad. Grandad. Come on. You're in goal.” It all put me in mind of another little one, 25-years ago, who, on her back on the living room carpet, would flail her legs and arms in the air, struggling to roll over. Did she imagine sailing pirate ships and putting six goals past a hapless goal-keeper? And if not, how did her brain develop? How did she learn about the world and herself? How did she separate fact from fiction? How did she manage, days later to be thinking about her imaginary world and the real world and share the difference with her Mum? And if she did not do these things, what did Auntie Sarah in her wheelchair, watching her nephew and niece protectively as a good Aunt always does, make of their play-world, real-world now? And another thing, why, as a society, do we still not show any convicted understanding of the vitality of the link between 'nature and nurture', of the importance of the physical and sensory in the engagement of self with the environment, that drives brain development, so that there should be initial training courses for those who would teach children with cerebral palsy, who can understand about pedagogy and the need for a structured curriculum, that deals with the integration of all aspects of the development of the brain and personality of the child with cerebral palsy? Never mind the schools and the SEN managers from the LEA who still will not talk to us at Paces, why are those who run the local Children's Centres likewise not beating a path to our door, seeking advice of our trained specialists? What can we do to change the professional mindset that does not see cerebral palsy as being potentially as much a developmental disorder as a physical one? Nor see, I was reminded last week, of the close inter-connection of all aspects of the education of the person, understood and advocated over 400 years ago by the founder of the Jesuits, Ignatius Loyola52 - and asserted more recently and in our lifetimes by the founder of Conductive Education, Andras Peto? Meanwhile, parents who do understand, who are faced with the reality, 53continue to struggle heroically against intransigent local education authorities, like the Ramsbottoms of Barnsley54 for the daughter Isabella55. I, of course, am not an expert, a specialist, a professional, an education officer, a consultant paediatrican, a politician. I'm just another irritating parent, and a soft-in-the-head Grandad. But if I know and can see with my own eyes what the ancient Greeks and Loyola and Peto

52 http://www.loyolaneworleansonline.com/loyola_jesuit_university.asp 53 http://andrew-sutton.blogspot.com/2008/02/struggle-continues.html 54 http://www.thestar.co.uk/barnsley/Parents-pledge-to-raise-funds.3727610.jp 55 http://www.isabellaivy.co.uk

knew, why can't you? -------- TITLE: Potential barriers CATEGORY: CE, CP, Learning, Neuroscience DATE: 03/07/2008 07:40:27 AM Through the Office for Disability Issues56, the Government has announced plans “to transform the lives of disabled people, including extra funding for organisations that are run by disabled people57”. The Independent Living Strategy, a cross-government strategy which underlines the Government’s commitment to supporting disabled people to do the things non-disabled people take for granted, aims to increase choice and control for disabled people. The Independent Living Strategy sits alongside such other strategic documents such as “Improving the Life Chances of Disabled People58” and “Removing Barriers to Achievement59” (the SEN strategy) that evidence a move towards a society in which “everybody is treated with dignity and respect and has the chance to fulfil their potential and unlock their talent.” This last quotation, about dignity and respect, potential and talent, is from the first statement in the Executive Summary of the new strategy. Gordon Brown uses a similar set of phrases in his “Prime Minister's Introduction”: “everyone has the opportunity to fulfill their potential” “and barriers to access removed”. On the Standard's website, the SEN strategy is introduced60 with the phrase “The Strategy sets out the Government's vision for enabling children with special educational needs to realise their potential.” Now in the face of such evident earnestness of purpose and commitment, to ask questions about “potential” and “barriers” might seem like quibbles. Many, perhaps most, disabled people and their families will welcome the strategy and press on, rejoicing that at least there is still evidence of forward movement. My point is not to gainsay that but to raise questions - I think quite serious questions: what do such phrases tell us about the writer's (and our) understanding of “potential”, and about how we should go about achieving equality of dignity and respect? It seems to me that common phrases, cliches even, such as “fulfill their potential” and “unlock their talent” betray, or reveal, an attitude to abilities that is commonly held, indeed underpins, for instance, teachers' everyday thinking and assumptions about pupils and their abilities - everyday assumptions since I was at school in the late 50s and early 60s at least; an assumption that, like “potential” and “talent” are fixed on the one hand and somehow internal or inside ourselves on the other, waiting to be metaphorically “unlocked”. Such attitudes, it seems to me, are solidly traditional - and stated, as here by the Prime Minister and those who draft Government strategy, without conscious thought about meaning. What if our potential is not fixed, our abilities and talents not waiting locked inside ourselves waiting to be unlocked? What if our potential as individuals is dynamic, ever changing, susceptible to learning and teaching in structured and unstructured environments? What if our brains, as the neuroscientists are recently telling us and

56 http://www.officefordisability.gov.uk 57 http://www.officefordisability.gov.uk/independent/strategy.asp 58 http://www.cabinetoffice.gov.uk/strategy/work_areas/disability 59 http://www.standards.dfes.gov.uk/primary/publications/inclusion/883963/ 60 http://www.standards.dfes.gov.uk/primary/publications/inclusion/883963

quite contrary to the traditional and commonly held view, are plastic and capable of learning throughout life? What are the implications for education and training? What are the implications for all of us, never mind just those with disabilities? And ironically, is not one of the greatest “barriers” to achieving dignity and respect, the clinging on to this outmoded view of “potential” and “talent”, “ability” and “disability”? Which brings me to “barriers”. This, I will admit, is something of a personal hobby-horse. Let me put it this way: I have lost count of the meetings and workshops that I have attended over the years where, faced with the moment where suggestions for 'ways forward' are requested, some one proposes to undertake a 'mapping exercise' to 'identify gaps in provision' (Most often this comes from public sector delegates in cross-sector meetings - largely lacking awareness of what is happening in the VCF or Third Sector). Very rarely indeed does anyone suggest mapping innovation or best practice, and then building on that by extending it. Similarly, I was at a meeting this week, listening to an interesting presentation on commissioning of public services and the Third Sector. Much was made of outputs, of accountability - criteria determined of course by the commissioning body (local authority, health service, government). I asked how, within the commissioning process they proposed to “commission innovation”; innovation, of course, being what they voluntary sector has long been good at - see a problem, create a solution. I suggested that without innovation, “commissioning” was sterile, infertile, could only deal with solutions to what we (or rather the commissioning bodies) think we know. Potential is fixed, to put it another way. So, it seems to me, with barriers; the “dismantling of barriers” as a way forward deals only with what we know; what is or has been known hitherto and not what could be or should be It is like walking through Life backwards or driving endlessly watching the rear view mirror or perpetually weeding the garden without planting. It seems essentially negative. By all means remove the barriers, the overgrown hedge across the public right of way. But once the barrier is gone, will everyone be able to use the muddy lane? What is needed is a national plan for public rights of way that allows everyone to enjoy the places the paths lead us through and to. “Removing barriers” is simply a task, not a purpose. We need a positive purpose - and the means to achieve it. -------- TITLE: "Child Advocate" - a new profession? CATEGORY: CE, CP, Learning, Neuroscience DATE: 03/10/2008 10:08:29 PM We recently had a 'Child Advocate' attend an Annual Review of a child with a statement of special educational needs I intend no reflection on the Child Advocate's performance of her duty by raising the following queries: 1) By what Statutory authority or under what Statutory regulation does a 'Child Advocate' attend an annual review? Nobody (except myself it seems) thought to ask this question. Perhaps everyone else knows the answer? 2) What training is necessary to become a 'Child Advocate'? What level of qualification is required to be accepted on a 'Child Advocate' training course? What qualification is awarded? Which institutions offer this training? 3) Is 'Child Advocate' a new profession? If so, who employs them? Should anyone reading this have answers, I would be most grateful. BTW a search on Google under 'Child Advocate' and 'training' or 'profession', (search limited to the UK) reveals little or nothing of interest in connection with the above questions. -------- TITLE: Rambling on about the value of education CATEGORY: CE, CP, Learning, Neuroscience

DATE: 03/12/2008 08:59:16 PM Walk with me awhile down an educational by-way. The Britain media, and politicians both national and local, are currently obsessed with parents who have sufficient interest in their children's education and upbringing as to be particular about the school their child should attend. Far from being praised or held up as exemplars to others who have less interest in their child, as one might expect, such parents are vilified. The popular term of abuse is “middle class”. The other evening I was chatting with my Dad. His Mum, my grandmother, died when she was just 50, of a massive epileptic seizure. He once told me that he witnessed the first time she had a seizure: she fell, burning her hand in an open fire. She was an amateur pianist and occasional piano teacher. She would have been about 30 years old then. That was about the time, too, that her husband, my grandad, finally left home, leaving her as a single parent of five children. The local Council, bless their cotton socks, continually wanted to take her children from her and put them in care. She fought, by all accounts, with every inch of her being. Despite the odds against them, she inculcated in her children a love for learning, education and school; all five children in turn passed the matriculation exam to go on from the village primary school to the local grammar school in the town. My grandmother is buried in an unmarked grave, somewhere in a Devon village parish churchyard. There were no funds for a headstone. Parish poor. Working class. My Mum's Dad, my grandfather, died when I was in my final year at University. He was a Staffordshire miner. He died of pneumoconiosis - 'Miner's Black Lung”. I remember that lovely man bent over with the pain of coughing and the straining to drag oxygen into his clogged lungs. He'd have been a couple of years younger than I am now, when he died. Sometimes, when I'm out on my bike, I remember him pedaling the couple of miles or so to work at 'the Michelin'. Working class. Proud of it. Yet I remember, too, (and this was what I was actually talking with my Dad about) the conviction in the whole family of the importance of education and me getting into a good local school. (I can tell stories of learning italic handwriting through long hours of copy-practice at night-time at home, but you don't need to know more. I am not romantic about it.) When I in turn came to matriculation, the 11+ (for which, of course, I and others practiced for hours on past papers at home), I remember the importance placed on the list of school choices. And so it was for my younger brother and sisters when their turn came. Education was important. Schooling was important. Choice of schools was important. And I do not remember that we were in any way unusual among neighbours and other families. How could we be? The demand for education and schooling for all children was a nineteenth century working class-driven ambition that lasted well into the mid-twentieth century at least. When I started teaching in the 1970s, there were still in Sheffield and probably just about in every other city and town, “ESN Schools” - schools for the “educationally sub-normal” What went on there I do not know. I do know that when I came to Sheffield in 1976, I learned (for some reason that escapes me now, I had no personal or professional interest) that Sheffield had a national reputation for the quality of education in its “special schools”. Walk with me know just a little further. I was reading tonight of a “scientifically rigorous and independent evaluation of the effectiveness of conductive education and to help guide parents, cerebral palsy care providers and policy-makers61” in which “functional and school readiness outcomes are assessed by independent physical therapists and through parental questionnaires. Data from Gross Motor Function Measure, quality FM, Pediatric Evaluation of Disability Inventory, Manual Ability Classification System, Communication Function Classification System, Devereux Early Childhood Assessment and other qualitative reports will be analyzed using various statistical 61 “ http://andrew-sutton.blogspot.com/2008/03/another-conductive-education-evaluation.html

methods.” What I wanted for each of my own three children as they in turn approached schooling milestones, was a good education, in a good school. What I wanted for my daughter with cerebral palsy and want, now that she is an adult beyond the reach of mainstream educators, for all children with cerebral palsy, is a good education in a good school. It is now nearly 20 years since I first was introduced to conductive education. Twenty years in which I have yet to find a comparable system and philosophy of education. Without doubt, conductive education needs the exposure to “scientifically rigorous and independent evaluation” of its effectiveness, for the benefit of parents choosing a school for their child and for policy-makers so that they can remove the blinkers of tradition and entrenched practice. I want a good education. I want good schooling. Let me be very simple. I am not talking about “interventions”; nor “therapy”; I am talking about “education”, “schooling” - the same as for my other two children; as my family wished for me; as my Grandmother wished for her children; as I do for all children with cerebral palsy. Can we not talk about 'education', quite simply, for children with cerebral palsy? Can we not devise the necessary research into the effectiveness of conductive education as 'education', where 'education' has the same meaning as it does for other children? Would research, then, into the effectiveness of conductive education - any education - or into “conductive upbringing”, be led by a paediatrician however distinguished and honoured, or be undertaken by colleagues, from a University Department of Epidemiology? Would assessments be undertaken by “independent physical therapists”? The walk is getting tiring. I am older now than when I road my bicycle around the Essex countryside as a teenager. But the other day, as I tried to summarise an especially difficult piece of writing, I realised that I was able to do so, thanks to a man who was then close to retirement, who we tormented mercilessly, as he tried to teach a bunch of 13-year old boys how to do a proper précis. Would we, should we, could we, attempt to research the effectiveness of any “education” or “upbringing” after a trial of just “one four week session” when the effects, the benefits, of education can appear a lifetime later? Conductive education seeks to teach 'orthofunction', a term that I am not clever enough to comprehend fully, but it means something like “the learned capacity for adaptability to one's environment”. (The important thing is to recognise this as a dynamic; not as a static set of achieved attributes; a journey, if you like, not a having-arrived). My daughter is now an adult in her mid-twenties. Quite recently, the manager of the short-stay place she goes to remarked that she and the others who attended the “Leaping the Void” adult conductive education programme at Paces were so “positive” in everything they did. They say you can spot an independent schoolboy. Perhaps, in the same sort of way, exposure to conductive education, good education, good schooling, produces adults with cerebral palsy who are “positive” about themselves, able to adapt dynamically to wherever they find themselves? My point is not that independent schools are good per se; nor even that children with cerebral palsy can only succeed in life through conductive schooling and upbringing. My point is that (unless you take a purely mechanical, functional, test-obsessed view of education as currently in mainstream UK schools), how can you ever assess the effectiveness of education unless you do so over long periods of time? How can the effectiveness of education be assessed by paediatricians and therapists and, God help us, epidemiologists? (“The branch of medicine that deals with the study of the causes, distribution and control of disease in populations62”. The traditional story of the elephant and the blind men63 is, I know, supposed to teach us the 62 http://www.answers.com/topic/epidemiology?cat=health 63 http://www.jainworld.com/literature/story25.htm

virtue of respecting others' opinions, views and perspectives; as each blind man felt a different part of the elephant, so each had a different, partial impression. Respect and tolerance. So, my best wishes to the team from the Department of Epidemiology. But sometimes I just want to say, I don't care what you think it is - it's an elephant! It's education! Can we just do some educational research? Can we just talk about the best education in the best schools for children with cerebral palsy? And what that would look like? And how it should be achieved? For once? Sometime soon?

BEING A PARENT TITLE: What Carers Need CATEGORY: Being a parent DATE: 11/01/2007 01:26:44 PM A straight lift, this, from a posting on a weblog written by the Mum of a child with cerebral palsy, the ironically titled “Terrible Palsy64” 26 October 2007: “What Carer’s Need. Someone has been working incredibly hard on this wiki65. If you are Australian, come and have a look or give your support in the lead up to the federal election. Things need to change.” The same things need to change in the UK too. The posting also alerted me to another weblog produced by another Australian parent: Roller Coaster Parenting66. Where are the UK parents writing such powerful experience pieces? I'd be interested to hear from anyone able to point me in the right directions. -------- TITLE: Conductive Education fantasy CATEGORY: Being a Parent CATEGORY: CE, CP, Learning, Neuroscience DATE: 11/18/2007 04:26:21 PM Andrew Sutton has a wonderfully ironic posting on his blog. I will return to this shortly and extend this posting. In the meantime, take a read67. (This quick posting is really by way of testing/learning how to use Trackback and whether I can make a connection with Andrew's Blogger blog). Some days later: As will have been seen, I had intended before this to return to Andrew's posting - but that was before some form of plague invaded me. I failed also to find out how to use Trackback with Blogger. Apparently it cannot be done at this time. In his posting, Andrew takes a report of an announcement68 from Andrew Adonis about autism services and, throughout, replaces autism with cerebral palsy, making a few other accommodating adjustments for the sake of sense. By this clever device, Andrew spotlights how conductive education “has fallen out of the public gaze over the years” and asks “what have the conductive people done wrong?” To his own question, Andrew offers several possible answers “to account for the political failure of the political movement for Conductive Education in the UK”: “Was it the Balkanisation of the parents movement, dodgy research, conductors failure to create a national professional presence, the destructive activity of the Spastics Society (now Scope) or what?” I doubt there is one cause. And offer the further thoughts: Perhaps conductive education having “fallen out of the public gaze” is all a reflection of the extent to which cerebral palsy has dropped below the radar of education professionals - whether civil servants or teachers or teachers' unions? The research undertaken by Peter Gray Associates on behalf of DfES and published in mid-2006, comprehensively eliminated cerebral palsy from the 'official gaze'. Perhaps it is a reflection of 10 years of a national policy of 'inclusion' into mainstream

64 http://terriblepalsy.wordpress.com 65 http://whatcarersneed.wikispaces.com 66 http://rollercoasterparenting.blogspot.com 67 http://andrew-sutton.blogspot.com/2007/11/cerebral-palsy-some-hope.html 68 http://www.24dash.com/education/29040.htm

schooling of children with special needs? When was the last time anyone ever heard of a teachers' union conference debating the difficulties presented to classroom management and the successful learning of other pupils by the inclusion of pupils with cerebral palsy? How often, on the other hand, is the inclusion of pupils with cerebral palsy still most often approached as one of physical access and not of learning (pedagogy, curriculum)? Perhaps it's just a sign of the (disability) times? I was taken recently by the press campaign for “Creature Discomforts”, the “new ad campaign to change attitudes to disability” from Aardman Animations in association with Leonard Cheshire, which features a bull terrier in a wheelchair. The clip I saw on BBC TV and the quote I read in a newspaper (neither noted so cannot link to) both focused on a statement along the lines of “because you use this - pointing to the wheelchair - doesn't mean you are deficient up here - pointing to the head”. Of course that's true. How can anyone possibly say otherwise? I wish that more people took notice of this simple advice when talking with my daughter, now in her mid-20s. And yet .... in an oddly contradictory sense, this excellent message somehow helps make it more, not less, difficult to get appropriate services. I was in a workshop meeting this week where the person making notes apologised for their spelling - and was assured that it was not the disability (dyslexia) that mattered but the message. It brought to mind my seeing, some years ago (beyond any possibility of giving you a link), an Oprah Winfrey show where she reflected on her identity and being black: that for some years she had wanted people to be 'colour-blind' and 'see the woman, not the colour'; but that she had come to realise that being black was an important part of her identity, and that if people did not see her colour, they did not see an important part of her. Similarly, we are urged to 'see the athlete and not the disability'. And what of Oscar Pistorius, the South African athlete who is “forcing the sports world to rethink what it means to be a disabled athlete” (Wired.com March 200769), because his disability potentially represents an advantage over non-disabled athletes? Can Oscar Pretorius' disability, like Oprah's blackness, like my daughter's cerebral palsy, be ignored? Should it? If, for instance, those carers who deliver home care to people like my daughter, or those such as classroom assistants (or teachers) who work with children with cerebral palsy, do not understand cerebral palsy, or what it means to be a person with cerebral palsy, or how cerebral palsy impacts on identity and self-esteem and sense of self-hood, how can they deliver services appropriate to need? And before any attempt is made to answer that question, it is worth remembering (again) that in this country we do not consider it necessary for teachers who work with children with cerebral palsy (nor anyone in the new Children's Services in local authorities) to undergo any initial training in working with children with cerebral palsy, or in understanding what cerebral palsy is, or in consideration of whether special pedagogic techniques or curricular arrangements are necessary. For what other group, other than the disabled, would it be possible to set out upon a professional career, knowing so little? The problem with cerebral palsy is that no-one really thinks its a problem. So there's no need of a “solution”. Why waste time and public resources, when there are more serious and pressing issues? An education officer from Barnsley LEA, now retired, with whom I was having an otherwise amicable conversation a year or so ago about placements at Paces School (or rather why Barnsley LEA would not place children at Paces School) explained to me that the problem was that LEA officers relied in making these “difficult educational decisions” on input from therapists and paediatricians, who by and large, she said to me “do not agree with your understanding of cerebral palsy nor of the educational arrangements you propose.” I, of course, thought that her understanding of cerebral palsy was locked in somewhere around 1860 and the discoveries of Dr Little. All of which is perhaps, and maybe altogether too tentatively, to say that the problem lies not so much in public understanding or lack of it, of conductive education (deficient as that is), but in public understanding of cerebral palsy, 69 http://www.wired.com/wired/archive/15.03/blade.html

which remains, after 150 years, as essentially a term in the medical lexicon, a condition discussed largely in terms of requiring surgical, or pharmacological or therapeutic “interventions”. -------- TITLE: A dislocated life CATEGORY: Being a parent DATE: 02/24/2008 08:22:23 PM The comedian Rob Brydon, interviewed for a feature “Rob Brydon's Identity Crisis” in yesterday's Times magazine section70, said this of his divorce: “However happy I am now, something is broken in my life, and I will have to live with that for ever”. I know how he feels. As I suspect does every parent caring for and supporting a child of whatever age, with a disability; and leading, as a consequence, a life “displaced from one's own life”. Something, if not quite “broken”, then dislocated. A before and an after. A loss of what might have been. Best not reflected on. But dislocated nonetheless, to be lived with forever. Yet Brydon begins: “However happy I am now ....” And I cannot, in just a few words, capture how much my daughter Sarah has contributed to my life as it is. -------- TITLE: ePetition - Cerebral Palsy, Conductive Education CATEGORY: Being a parent CATEGORY: Web2.0, Participation and eDemocracy DATE: 02/27/2008 04:54:15 PM My attention has been drawn to an ePetition71 on the Number 10 Downing Street website. We might question the effectiveness of ePetitions in principle; we might argue with the drafting of a particular petition. However, ePetitions give some airing to a cause that, with sufficient signatories, might just catch someone's attention They also provide a perfectly legitimate reason for writing to your local MP, to draw his or her attention to the issue. The LEA concerned is Barnsley The person who submitted the ePetition is a parent known to me, though I did not know she was planning an ePetition. Below, I've copied the ePetition from her email but don't just read it here, go to the Number 10 web site and sign the petition! The ePetition reads: “We the undersigned petition the Prime Minister to review the Special Needs Provision and the post code lottery that currently exists between different Local Education Authorities. All Local Education Authorities should be made to ensure the parent's wishes and child's needs come before any financial considerations. “Parents of children with Special Needs have to fight to get an education that their children deserve My daughter and another child in our LEA suffer from Cerebral Palsy and have to fight our LEA to get an education that will benefit them. Our LEA closed all schools but one and considers this school adequate despite clear documentary evidence that this is not the case. Parents are forced into a tribunal system that claims to be independent and must fund the fight themselves. We are forced to fund raise to place our children in a school outside the LEA area that has a proven track record in improving the lives of children with Cerebral Palsy allowing them to fulfil their potential in life. Currently only one of the children attends this school and her place is funded by constant fundraising by friends and family, she is the only child at the school who is not funded by their LEA. The other child's parents are now being forced into independent tribunals knowing that they have little chance of winning and face 14 years of trying to fundraise in excess of £290,000 to give their child the education she needs and deserves. This post code lottery is unfair and cannot be allowed to continue.” 70 http://entertainment.timesonline.co.uk/tol/arts_and_entertainment/tv_and_radio/article3389470.ece 71 http://petitions.pm.gov.uk/LEAfight

-------- TITLE: A dysfunctional system - amazing parents CATEGORY: Being a parent DATE: 03/04/2008 10:18:49 PM I commend to you two coincidentally related postings: The first, Andrew Sutton's comments72 prompted by the Tesco-sponsored award of “Mum of The Year73” to Jo Baker-Watson founder of Megan Baker House, who was feted at 10 Downing Street .... “It is nice to live in a still sufficiently pluralistic society to have a Prime Minister with ultimate responsibility for creating such dysfunctional policy throwing open his residence to an independent commercial body honoring someone whose efforts are only really necessary because that policy is so hopeless that it is left to ordinary people to try and put things right”, The second, Peter Limbrick's review74 of Not Stupid, by Anna Kennedy, a parent of a child with autism. “Books about amazing parents” begins Peter, “who set up wonderful projects come along regularly and share a broad pattern”, and he concludes, reaching a remarkably similar end-point to Andrew: “The lack of effective statutory support systems for people with disabilities in the UK means that this family’s incredible work is just one more patch sewn onto the sparse quilt and who knows how strong the stitches are?” Writing as just one such parent, I once met Tony Blair at Number 10. There's a picture of us presenting him with a Paces' leaflet in our cafe. End of story? Maybe not. Maybe there's a footnote: Where's he now? We, on the other hand, are in it for the long haul. -------- TITLE: A Prior Right? 60 years on. CATEGORY: Being a parent DATE: 03/06/2008 09:33:24 PM Universal Declaration of Human Rights. United Nations. 1948. Article 26. (3) Parents have a prior right to choose the kind of education that shall be given to their children75. What on earth can this mean, if it does not mean that children should not be allocated to schools by lottery against their parents' wishes? And, more to my concern, that parents such as Sandra Scattergood should not have to resort to ePetitions76 that “All Local Education Authorities should be made to ensure the parents' wishes and child's needs come before any financial considerations.” There's much talk of 'rights' just now. Just published is “A Life Like Any Other? Human Rights of Adults with Learning Disabilities77” a report by the British Parliament's Joint Committee on Human Rights, calling for a culture change in the provision of services for adults with learning disabilities and a move away from negative stereotypes. 1948. That was 60 years ago. Sometimes one just shakes one's head and wonders.

72 http://andrew-sutton.blogspot.com/2008/03/mum-of-year.html 73 http://ukpress.google.com/article/ALeM5jzlrUoD1slK-6XNve-JIxylfU 74 http://www.icwhatsnew.com/bulletin/0803/25.htm 75 http://www.un.org/Overview/rights.html 76 http://petitions.pm.gov.uk/LEAfight/ 77 http://www.publications.parliament.uk/pa/jt/jtrights.htm

ORGANISATION: GOVERNANCE. MANAGEMENT. FUTURES. TITLE: Business Model for charitable companies. CATEGORY: Paces' Futures DATE: 08/12/2007 08:14:10 AM What is Paces' “Business Model”? Do we need one? What is a “Business Model”, anyway? The question of Paces' Business Model arose quite early in the process of strategic planning our Trustees and management team are currently undertaking - and has remained unanswered. As often with the internet, I almost by chance came across a useful-looking blog posting78 from November 2005 that seemed neatly to set out what a business model is and then on the same blog almost a year later, November 2006, found a Business Model Template79, for generating business models, free to use under a Creative Commons licence. This interesting thread led me (thanks to a Comment added to the 2005 blog post) to a diagrammatic categorization of business models into 16 categories using a 4*4 matrix as part of the MIT SeeIT Project, apparently copyrighted 200180. At this point, I have that uncomfortable feeling of stepping out of my depth! These discussions, like other discussions of Business Models I came across, are around 'for profit' companies. Paces, of course, is charitable company - a 'not-for-profit' or 'non-profit', though I have never found either term especially appropriate. (All enterprises are 'for profit'. It's what happens to the profit that is one crucial difference. Another difference is the 'dual bottom line' familiar from 'social enterprises' - but debating the differences is a story for another day.) Does a charitable company, a charitable enterprise, a 'non-profit', need a Business Model and what might that look like? Stepping happily further out-of-my-depth, I came across the annual report for 2006, published June 2007, of the Wallace Foundation that contains “The President's Essay - Public Accountability for Private Action”81 which can be downloaded.. It will repay closer reading. For here and now, two brief 'taster' quotations: “As a nonprofit organization, of course, our ultimate goal is not financial gain but progress toward the social change goals expressed in our mission.” “Less easy to measure, and more difficult to discuss publicly, are the results of a foundation’s work. What progress have we made toward our ambitious social change goals? How do we know? How can we talk about what didn’t work? This second quotation starts to move away from the Business Model discussion. Yet, measuring results requires a knowledge of what the Foundation set out to do - which loops back to the question of the Business Model. -------- TITLE: More on Business Models CATEGORY: Paces' Futures DATE: 08/12/2007 09:06:31 AM Curious, I thought I would explore a little more Alex Osterwalder's blog “Business Model Design and Innovation” that began my enquiry into Business Models Very worthwhile. His

78 http://business-model-design.blogspot.com/2005/11/what-is-business-model.html 79 http://business-model-design.blogspot.com/2006/11/business-model-template-designing-your.html 80 http://process.mit.edu/Info/eModels.asp 81 http://www.wallacefoundation.org/KnowledgeCenter/KnowledgeTopics/PhilanthropicIssues/WallacesREPORT06.htm

posting on 15th June 2007, “Workshop Outcome In Mexico82” shares a thoroughly understandable slide presentation of work undertaken during break-out sessions when he got the participating executives to design parts of a business model of a soccer club. In addition, he shares a guide83 to underlying concepts in business model design and design thinking. Both presentations run to over 150 slides. I should mention that the slide presentation tool used is from SlideShare84, a web2.0 tool I was not previously aware of. Alex Osterwalder's SlideShare presentations can also be accessed via the SlideShare website - the Mexico workshop guide to underlying concepts is on SlideShare85. -------- TITLE: Dowding's Universal Business Model CATEGORY: Paces' Futures DATE: 08/12/2007 09:44:33 AM Other than this brief biography86, I have no idea who Howard Dowding is, and his Universal Business Model website87 is highly functional and sparse. However, the actual Universal Business Model88 is a bit different from anything else I've seen and claims to be applicable to 'charitable trusts'. It is also English. Whilst the model is copyrighted 2001 to Howard Dowding, it is possible to use the model online89 to create an organisation specific model. -------- TITLE: Two Audit Office Third Sector Reports CATEGORY: Paces' Futures CATEGORY: Third Sector CEO DATE: 08/31/2007 07:31:48 AM One of the responsibilities of a third sector CEO is to consider the future 'shape' of the organisation against the background of public policy in relation to the sector that is arguably changing more rapidly than at any time in history. Some suggest that we are witnessing the end of the traditional “voluntary” sector. The Audit Commission has recently published two important reports related to the third sector: and together they provide a wealth of contextual information on the national environment, including Government public policy, within which third sector organisations like Paces currently operate. Reading these documents prompts me to consider Paces future and the necessity, first raised by one of our Trustees, for a discussion regarding our business model. “Hearts and Minds - commissioning from the voluntary sector90” (July 2007) sets out the Commission's “findings on: the extent and nature of the voluntary sector's delivery of public services; the locally perceived impact of government efforts to build capacity; the current state of commissioning; and procurement practice. The report is primarily for managers in local councils who are responsible for commissioning services, but it will also be of interest to voluntary organisations and national policymakers.” “Evidence from 12 large national charities shows that their delivery of public services could be undermined and limited by the complexity of the arrangements by which they receive public funding.91”

82 http://business-model-design.blogspot.com/2007_06_01_archive.html 83 http://business-model-design.blogspot.com/2007_06_01_archive.html 84 http://www.slideshare.net 85 http://www.slideshare.net/Alex.Osterwalder/2-day-workshop-on-business-model-design 86 http://www.howarddowding.com/dowding.htm 87 http://www.howarddowding.com/home.htm 88 http://www.howarddowding.com/modelx.htm 89 “ http://www.howarddowding.com/example6.htm 90 http://www.audit-commission.gov.uk/reports/NATIONAL-REPORT.asp?CategoryID=&ProdID=418C38AF-0D97-49dd-95D6-EE7E7BA43773 91 http://www.nao.org.uk/pn/06-07/charity_funding.htm

-------- TITLE: A victory for red tape? CATEGORY: Third Sector CEO DATE: 09/08/2007 09:41:22 AM “The proliferation of more and more stringent and prescriptive monitoring requirements is choking the voluntary sector, and forcing its beneficiaries into second place in the pecking order.” So says Ben Wittenberg, Director of Policy and Research at the Directory of Social Change in a recent Guardian Online article92. He argues that a trend towards “funding structures more commonly associated with statutory grants and contracts” is a trend towards “bureaucracy and accountability, rather than flexibility and common sense”. He locates the problem in the lack of a reciprocal relationship between funders and recipients; in particular, funders' emphasis on project funding and monitoring. His answer is: “More funding of organisations, rather than projects, would provide more scope for development, more flexibility for the organisations receiving funding, and far less stringent additional monitoring.” Ordinary people still approach the setting up of voluntary organisations (“let's set up a charity”) in the expectation that their good heart and their willingness voluntarily to give their time in a 'good cause' were sufficient. Likewise, they imagine that putting on fund-raising events and applying for grants will bring in the income for their 'good works'. I have recently been involved helping set up just such a 'charity': hopefully alerting them to the real task they are taking on without destroying their dream and ambition to make a difference We were the same in 1992, when Paces was set up. My experience, certainly during the past 5 years, is that Ben Wittenberg is essentially correct: the burden of 'bureaucracy and accountability' has increased overwhelmingly to the point of having an adverse effect on our capacity to maintain a proper balance in staff time expended as between 'paperwork' and 'service delivery', and how this impacts on the interests of our beneficiaries. As CEO of a smallish regional charity, I am uncomfortably aware that it is not a simple issue of staff time but also of our morale as individuals and as a whole organisation: increasing demands for accountability which are seen as excessive are counter-productive and corrosive of the very commitment on which the whole charitable intention thrives. I am reminded of the question once asked of us by an officer of a regionally well known grant-maker, on being approached for a small grant to undertake a Feasibility Study, prior to launching a funding appeal for a modest project: “How do you know you need to do a feasibility study? she asked” The world separates into two camps: those who fall about laughing on hearing this - and those who regard it as a perfectly legitimate question to which a proper answer should be supplied if the application is to go ahead. The latter camp increasingly have the upper hand. (Unable to provide a satisfactory answer, we withdrew the application. The project has not yet gone ahead.) -------- TITLE: Paces Strategic Plan CATEGORY: Paces' Futures CATEGORY: Third Sector CEO DATE: 10/04/2007 12:04:53 AM Trustees having approved Paces' Strategic Plan93 on 24th September 2007, which I have been 92 http://www.guardian.co.uk/vukf/reach/story/0,,2101074,00.html#article_continue 93 http://paces.typepad.com/paces/files/0712_strategic_plan_v.5.4.doc

working with them on since back in March, my attention now turns to the related Business Plan. Aside from the very few who may be curious about what Paces is up to, perhaps the main general interest in the Plan is its structure. Being a third sector, charitable company, we have a commitment to the concept of the 'double bottom line' in evidencing our success - in the traditional financial accounting terms but also in the rather newer practice of 'social accounting'. The question was, how could we reflect that in our Strategic Plan? Alongside Corporate Aims and Objectives, we opted to set out Desired Outcomes and Key Outputs for Beneficiaries. It might be worth a look for that alone. There are some useful links that I should add at this point, for anyone interested in reading more. Actually, this is the first time Paces has really taken on laying out strategic planning on this scale - and it is an ambitious one, led by our Chair and the Trustees; which is also a major step forward. At several points, though not always to be detected, the drafting was influenced by my recent Study Tour funded by the Winston Churchill Memorial Trust. It's also the first time we have made our ambitions public. -------- TITLE: Governance and Priorities for a CEO CATEGORY: Third Sector CEO DATE: 10/09/2007 09:51:16 AM I see this year's ACEVO annual conference is entitled “Governing the Future - The Roles of Chairs and Chief Executives” and will “help CEOs and trustees answer the tough questions they face: - strengthening governance to meet future challenges? - developing high-performing trustees? - building better relationships between chair and chief executive?”

I will not be attending the conference. Not because I do not think the subject important. Likewise, I do not belong to ACEVO. Again, not because I do not think it would be useful to do so. It's simply that among the “tough questions” I daily face as CEO of a small, regional third sector organisation is managing my time by prioritising not simply what I think it important that I should be doing but prioritising where I consider I can have most effect. This morning I have responded to an email regarding an away day for the Board of our local Community Forum. I have followed up a note about the Special Education Consortium94. And I have pondered ACEVO and Governance. Each is a totally, brain-bendingly different sphere: neighbourhood renewal; special education and governance. In a very real sense, they only overlap in my head, and in organisations like Paces. To be effective as a CEO, and an organisation, we have to hold these disparate realms together, as a 'generalist' to meet with and converse with 'specialists' in these disparate fields. We at Paces have been here before, considering governance. Our first foray into governance a couple of years ago was to consider the Carver Policy Governance Model95. Carver was more complicated at that time than we were really ready for. Last month, Trustees approved our Strategic Plan which sets out as the sixth of six Key Strategies “Establishing a comprehensive governance framework, which meets effective governance standards”. What is governance? The Governance Hub provides a useful working definition: “the systems and processes concerned with ensuring the overall direction, effectiveness, supervision and accountability of an organisation96”

94 www.ncb.org.uk/Page.asp?originx_6575ud_86058461632917e47f_20071195132n. 95 http://www.carvergovernance.com/model.htm. 96 http://www.governancehub.org.uk/what_is_governance.html

That is no small task. One that Paces Trustees must collaboratively get their heads around. But it must also be a priority for the CEO: good governance is a prerequisite of good management. Or, as the Governance Hub puts it: “Good governance is key to the health and success of an organisation”. Nonetheless, I shall not be travelling to London for ACEVO's conference. I have work to do. -------- TITLE: How to be top in a 24/7 world CATEGORY: Third Sector CEO DATE: 11/27/2007 06:51:56 PM One of the purposes I had in mind in experimenting with this blog was how to use it to reflect upon being a Third Sector CEO. In today's “Times”, Penny Wark presents the conclusions of Heather Dawson, author of “Faster, Faster” as to why some CEOs succeed and some fail97. What traits make a successful senior executive?

1. Control. Successful executives are in control of their lives rather than being controlled by their jobs. They understand they have choices.

2. Time. They make time to think and focus. 3. Calm. They have the ability to lead in a climate of uncertainty and ambiguity. 4. Knowing when to stop. Those who cope best recognise when they are running on

empty. To these are added 3 'foundation skills':

1. Understanding they can't do everything and will benefit by surrounding themselves with complementary skills

2. The ability to process conflicting sources of information and work out exactly what is going on

3. A talent for thinking ahead and planning. The first thought that struck me was that these traits of success in 'top' senior executives seemed entirely familiar in my own role as CEO of a small regional charity. Once, at a critical moment in a Trustees' meeting, the Chair asked me how I assessed the Charity's situation in the light of the rather difficult circumstances I had just reported on. I reflected for a, perhaps overlong, moment and replied “OK”. The Chair reacted as if electrically shocked: “When things were dire, desperate and bloody suicidal,” he laughed “you said they were good. What sort of state must we be in now, if you only say they are 'OK'?” So I suppose I have ability to lead in a climate of uncertainty and ambiguity. A former colleague and friend has said that I have a 'high risk threshold'. Somehow, I never quite felt that was a compliment, though no doubt it was intended as such - or at least, a neutral observation. Actually, I only recall one moment when this skill or 'trait' deserted me and that was just about a fortnight ago. It has now taken nearly three years all but one and a half months to negotiate a proper lease with Sheffield City Council. Repeatedly we have sought to persuade the Council officer concerned to set out a time-frame. In Dec 2006, it would be completed by March 2007; in March 2007, by July 2007; in July 2007, by November 2007; in November 2007 .... throughout this time I have assured everyone on Campus and repeatedly urged my Trustees that we were close to a resolution and of the need to be patient just a little longer. On 12th November 2007, an email was received that said it would be a further 2-3 months after the Heads of Terms had been agreed and forwarded to Legal and Admin for the full lease to be drafted. As Gerard Hoffnung said in the great humorous monologue the “Bricklayers Story”, “at that moment I must have lost my presence of mind98”. For a few days, I actually saw no end at all to this monstrous saga of resource wasted in time and energy 97 http://business.timesonline.co.uk/tol/business/movers_and_shakers/executive_movers/article2948591.ece. 98 http://www.musicweb-international.com/hoffnung/bbc.htm

and good will. I am still only in recovery. On the other hand, 'scouting ahead for the wagon-train' as I used to see and describe “thinking ahead”, always seems to have come easily; as does 'knowing when I am running on empty', though I should say that as a Dad to a now 25-year old with cerebral palsy and managing an innovative and demanding project, I long ago learned to work, as I then said, 'with one cylinder permanently misfiring'. Latterly, as it has been possible (perhaps necessary) to dedicate more and more resource to operational activities, so it has seemed to me more important that someone (me?) takes/makes the time 'to think and focus' and to plan ahead. Since March 2007. I have led Trustees in a piece of work to set out our first proper Strategic Plan. Not easy. Trustees signing that off at the September meeting was satisfying. -------- TITLE: Valuing People Now; Healthcare Commission & Ed Balls CATEGORY: Third Sector CEO DATE: 12/13/2007 07:39:19 PM No comment, just a couple of useful links to recently launched reading: Valuing People Now99, a Healthcare Commission's document100 and a couple of DCFS press releases from Ed Balls: “Ed Balls Launches Plan for Children101” “£53m to Help Disabled Children, Young People and Their Families102” Light Xmas reading for a busy CEO and Dad. Seasonal Smiles. -------- TITLE: An awful warning for all CEOs CATEGORY: Third Sector CEO DATE: 12/14/2007 07:29:04 AM Matthew Parris in The Times is always worth a read: often witty and thought-provoking. Having, it seems, spent nearly all year as Paces CEO grappling with Strategic Planning, trying to engage Trustees and Staff, I couldn't help but relish the following. It is an awful warning for all third sector CEOs, striving to make their enterprises more business-like in the contracting culture it seems we must now inhabit. I shall quote it in full. For some reason, it reminded me of the great Gerard Hoffnung; just a little re-phrasing and I could almost hear his wonderful voice and comic timing. “A JOB FOR SPEAKERS OF FLUENT GIBBERISH103 “Last week I cited a Department for Work and Pensions list of its myriad heads of communications, strategic communications, communication operations etc. This has prompted a reader to send me a full-page newspaper advertisement, describing situations vacant in the Commission for Equality and Human Rights. “It advertises the positions of 13 different Directors (Salaries £55,000 - £80,000): a Director of Policy, of Foresight, of Research, of the Disability Programme, of Business Planning, of the Commissioners' Office, of Legal Policy, of Legal Enforcement, of Corporate Law and Governance, of Information Management, of External Affairs, of Stakeholder Management and of the English Regions.

99 http://www.dh.gov.uk/en/Policyandguidance/SocialCare/Deliveringadultsocialcare/Learningdisabilities/index.htm 100 http://2007ratings.healthcarecommission.org.uk/patientsandthepublic/healthcarefocus/learningdifficulties.cfm 101 http://www.dfes.gov.uk/pns/DisplayPN.cgi?pn_id=2007_0235 102 http://www.dfes.gov.uk/pns/DisplayPN.cgi?pn_id=2007_0234. 103 http://www.timesonline.co.uk/tol/comment/columnists/matthew_parris/article3042684.ece

“What is stakeholder management? What is information management? What does a Director of Foresight do? Why is there no Director of Hindsight? Why does the CEHR want a Director of External Affairs? Are quangos now to maintain embassies abroad? “Well, each job is described. All require (the ad says) strategic vision, the Disability Director being required to lead and direct a portfolio of strategic policy projects (as well as deliver the CEHR's mandate and cross-strand approach), while the Director of Business Planning is developing strategic policy projects, and the Foresight Director is busy identifying key strategic objectives. “The Director of the Commissioners' Office, meanwhile will fill a strategic role; the Legal Policy Director (working closely with external stakeholders) will build strategic relationships while leading the development of a legal strategy; and the Legal Enforcement Director will ensure the CEHR meets [its] strategic objectives. In a text no longer than this column, one clutch of vacuities occurs again and again:

• strategy/strategic: 8 • policy: 9 • manage/management: 10 • lead/leadership: 8 • relationship/s: 5 • build/develop/build and develop: 12 • co-ordinate: 3 • stakeholders: 4

“The landscape is littered with goals, objectives, and targets. An insane climax is reached in the description of the Director of Stakeholder Management's role: “You will help build and develop the external face of the CEHR [though the External Affairs Director will have a unique opportunity to build and develop the external face of the CEHR] as an accessible, ambitious organisation. Key tasks will include co-ordinating stakeholder relationships... whilst co-ordinating a process that categorises relationships... You will also establish relationship management objectives and goals.” “On what planet, in what galaxy, in which cosmos do these people live? Is theirs an internal language, known only to a priesthood? Does the language mean anything to them? An entire segment of our fellow citizens is spinning off into a kind of linguistic oblivion, leaving us, gaping and bewildered, behind.” -------- TITLE: Antidote to Strategic Planning CATEGORY: Third Sector CEO DATE: 02/01/2008 06:32:50 PM A month has slipped by since I last posted. A month of being very busy. In a moment of breath-catching, I found this, a humorous greetings card from the wonderful collection “the interesting thoughts of Edward Monkton104”. A drawing shows a line of figures walking a low horizon stretching from left to right. The caption reads: ”Where are we going?” “I don't know. Maybe he knows.” “No. He definitely doesn't know.” Pause. “Maybe no-one knows.” Pause. “Oh well. I hope it's nice when we get there.” 104 “ http://www.edwardmonkton.com

Sometimes I'm tempted to think that the most difficult part of implementing a Strategic Plan is persuading colleagues we even need one. The Third Sector has a long journey ahead if we are to compete for public sector contracts. I hope it's nice when we get there. -------- TITLE: A little encouragement CATEGORY: Paces' Futures CATEGORY: Third Sector CEO DATE: 02/13/2008 11:30:25 AM Andrew Sutton, ,in his posting “Blogs I Like105” on his own weblog, makes some kind remarks about my efforts here. He also writes, “The sort of things that concern him are the egregious ignorance of motor-disorder amongst decision-makers and bureaucrats responsible for providing the services”. For the past three months, and following on from our Trustees adoption last September of a new strategic plan, Paces has commissioned a researcher, Ann Menzies-Blythe,of Circle Consultancy, to review perceptions of Paces in our wider community and then to help us consider how we might broaden and deepen our conversations with the very “decision-makers and bureaucrats” Andrew refers to, as well as the academic and private sector communities. As a first step, she has been working with 'Paces People' to build a picture of how we (Trustees, staff, volunteers, parents) perceive ourselves and how we believe others perceive us. As CEO, I have had the privilege of reading an interim report, in which, at one point, she writes of us: “There was an almost wholesale despair at the failure of the authorities to recognise the sheer quality of the work being done” and again of “the apparent reluctance of the authorities to take on board, the leading edge thinking of a multiskilled/purpose campus- a concept that is perhaps year’s ahead of its time, in special educational thinking”. For those who do not know the Campus, it is a former 1970s-built local comprehensive school on a 5-acre site, with open space, park and woodland on three sides. You might like to take a tour on Flickr106. Our vision for the Campus was and is of a resource for children, young people and adults with motor and other disabilities and their families at the heart of an inclusive local community centre. In the synergy of two communities, one of interest and the other of geography, is our special achievement107. The trigger for Ann's observations here (that reflect Andrew's) is the lack of investment in the facilities and fabric of the building - the under-investment in capital development being directly attributable to the lack of a proper lease, negotiations around which have continued with “decision-makers and bureaucrats” at least since January 2005, when the City Council approved a long lease in principle. The tension between seeking, on the one hand, to maintain and even raise the quality of what Paces and other Campus-resident groups have to offer and, on the other hand, the slowly deteriorating fabric, is corrosive of energy, sapping of commitment and emotional strength and an almost total barrier to developing cross-sector partnerships. How can we invite others to co-locate services here when we can get “decision-makers and bureaucrats” to see neither the value and quality of what we do nor the need for properly resolving our tenure? These are the headaches of a being a CEO that I suspect Andrew is glad to be shot of

105 http://andrew-sutton.blogspot.com/2008/02/blogs-i-like.html 106 http://www.flickr.com/photos/9806805@N05/sets/72157602367958173. 107 www.achievementcentres.co.uk.

No-one ever said it would be easy. Yet a little encouragement goes a long way. Thanks for the mention Andrew. -------- TITLE: Sheffield is "ah bit shitty" CATEGORY: Paces Futures DATE: 02/16/2008 05:07:05 PM Some years ago, Paces had some visitors from South East Asia. Walking out of the railway station, the leader, perhaps a little surprised at the city stretching before them, probably wanting to pay a compliment, but struggling with unruly foreign consonants, said to my wife who was there to greet them, “Sheffiewd is ah bit shitty”. On mornings like this morning, when I have heard of a parent weeping in frustration, disappointment and distress, Sheffield does not at all seem “a big city”, if by that we mean a city with a big heart and big vision for itself and for its children, especially those most in need. Indeed, it would seem our South East Asian visitor, had it about right: this city, which aspires to be a leading European city, over the centre of which tower cranes rebuilding its commercial and civic heart, can actually be “a bit shitty”. Not the people of Sheffield understand, but rather the City Council, or rather the Children and Young People Directorate, or rather the managers of the Special Educational Needs section of that Directorate , or perhaps just those officers in it who decide the educational futures of children they do not know. A city that still does not have a Strategy for children with special educational needs, or if it has, cannot and does not make it available; A city that has been seeking to relocate its school for children with physical disabilities inclusively onto a mainstream site since 1989 to my certain knowledge as a former parent governor - and still has no plan, or if it has, will not make it available; a city that can so mismanage an application for a Statement of Special Educational Needs that the family is requested to resubmit the application so as to begin the process again, and then, again (again!) mismanages it so as not to conform for a second time to its statutory obligations, and then has the temerity and indifference, the lack of compassion and decency, not to approve the School that the parents wish their child to attend. One would perhaps not mind so much if one had confidence in the judgement of the officers who make these decisions. But it is difficult to have that confidence in these officers when they cannot produce for public inspection a Strategy - which, when all said and done, is just visible evidence that they know what they are doing and have a plan; when these officers take 18 years to relocate a school; when they mismanage a straightforward process not once but twice. It is difficult to have confidence in officers charged with making these decisions who distribute lists of special schools to parents (as they must by law, and including Paces School), that after 10 years do not include Paces School and then ask us to believe that the omission was “an administrative error”. It is difficult to have confidence in the judgement of these officers in the placement of an individual child who, I repeat, is not known to them; who will not visit Paces School to see for themselves what we might have to offer; who have asserted that there is no reason to talk with Paces about the education of children with motor disorders in this city. This is best practice? How can these officers possibly know that the local authority school can provide for this child or that or any, when they give every indication that they themselves do not know what they are doing or why? The decision is perverse. 15 years ago, at a meeting hosted in the Lord Mayor's Parlour in the Town Hall and attended by a large group of people from public, private and voluntary sectors, the proposal was put to the then Local Education Authority to set up in Sheffield, in partnership with the International Peto Institute, a school and centre for the conductive education of the motor disabled. The senior education officer present responded by insisting that it would be necessary for a

committee to review the principles of conductive education. 15 years later, we are still waiting for a response. In the last 10 years, we have heard much nationally and locally, of cross-sector partnership working; of an increased role for the “third sector” in the delivery of public services; of the relationship managed according to a 'Compact'; of the expansion of choice in education and of an increasing diversity of providers of schools. Just rhetoric? “Yes, Minister”. Any reader who cares to, and there are few enough of you, is welcome to dismiss this as just another rant. A city council officer once told me that in his 25 years working for the Council I was “the single most difficult person he had ever had to deal with”. “Which only goes to show,” an experienced community Labour Party member said, “what a sheltered life he must have led.” Any reader can dismiss this posting by sticking on it the oh-so-familiar label of “difficult parent.” However, more thoughtful readers will recognise there are raised here (in the impact on the child and his family, the behaviour of the local authority, my reaction to it), the need for important national and local debates, for instance: How are children with cerebral palsy to be educated? What is the role of non-maintained and independent special schools? What should parental choice actually mean? So begins yet another struggle that will no doubt end in a Tribunal hearing; will cost the City public money; will cost Paces and the family precious funds and energies. Not to mention the stress and distress for a family that do not need it. How much differently they manage things in California under the Lanterman Act! -------- TITLE: Where can I find the debate on the education of children with cerebral palsy? CATEGORY: Third Sector CEO DATE: 02/18/2008 09:52:05 PM On Friday I attended a “third sector” event at SCEDU (Sheffield Community Enterprise Development Unit108) - a seminar entitled “Get Ready for that Local Authority Contract”. Part-hosted by Pelican109 the seminar included a presentation from Catherine Tyack of the Government's Office of the Third Sector Public Sector Partnership Team110 and two workshops: “Plan for Growth and Change” led by Brian James of SHIELD111 and “Networking” led by Ruth Livesey of Pelican. Feeling somewhat 'under par', I wasn't able to stay for the whole of this interesting event which was also the occasion for launching SCEDU's report for the Finance Hub112 on benchmarks of success aimed at third sector organisations that would like to get ready to compete for public sector contracts. The report and the benchmarks document that accompanies it are informative and useful. I will read them with care and share them with colleagues. However, enthusiasm for the 'contracting culture' needs to be tempered by a clear understanding of the needs of and commitment to the beneficiaries which 'third sector' ('voluntary') organisations were set up to serve. In short, there can be a tension within an organisation between a 'contracting culture' and charitable purposes. The Introduction to the benchmarks report hints at this: “The journey from grant funding to contracts is often a long and difficult process and is not appropriate or available for every organisation”.

108 http://www.scedu.org.uk 109 http://www.consultpelican.co.uk, 110 http://www.cabinetoffice.gov.uk/third_sector 111 http://www.shield.org.uk 112 http://www.financehub.org.uk

The purpose for which Paces was set up, in the words of our Mission statement at the top of this blog, is: “Supporting families supporting disabled children into independent adulthood as active citizens; especially those with cerebral palsy and particularly through conductive education.” At the seminar, during a break, I asked one of the speakers when she had most recently heard that the education of children with cerebral palsy was a 'problem', a matter for public debate? As she appeared not to comprehend the question, I suggested she substitute autism, or dyslexia or emotional and behavioural difficulties for cerebral palsy. She then agreed that she was indeed aware of the continuing public discussion about the education of children with autism or dyslexia or educational and behavioural difficulties, but was equally clear that she had never heard of any such public discussion regarding children with cerebral palsy. My point precisely: neither national nor local Government, neither the DCFS nor local education authorities, regard the education of children with cerebral palsy as presenting any sort of problem, in practice or principle. And if the education of children with cerebral palsy is not a problem, why would any public sector body contract with a 'third sector' organisation for the delivery conductive education services? Why then did I bother attending the seminar? Why would we 'get ready for that local authority contract'? I'd be delighted to hear answers to that question from anyone. I have one or two thoughts myself. But if the answer to the question “Where can I find the public debate on the education of children with cerebral palsy?” is that there isn't one, then perhaps it is time we started it; perhaps the only possible answer is: the debate starts here. -------- TITLE: Re:Lease / Release CATEGORY: Paces' Futures DATE: 02/23/2008 06:34:48 AM I read, alerted by a posting on Andrew Sutton's blog113, that efforts are being made to secure the future of the Buddy Bear School in Northern Ireland. The Motion before the Northern Ireland Assembly114 was due for Tuesday 19th February and I hope shortly to read of a positive outcome. Meanwhile, on Wednesday next, 27th February, the Cabinet of Sheffield City Council, is scheduled to decide whether to approve the granting of a lease to High Green Development Trust which manages the premises and site on which Paces is located. The grant of a lease was first approved in principle by Cabinet in January 2005. A new approval is now required because the terms negotiated with officers in the interim are, apparently, sufficiently different from those approved originally. We are assured that this fresh approval is a mere formality, that there will be 'no problem' It would be good to think so. The news that it is so will finally release energies pent up over 10 long years; energies that can finally find release in planning for capital investment in the premises and the 5-acre site, transforming the 1970s-built building. Such delays can be “corrosive”, wearing away not just at energies and commitment but at the very necessary sense of a collective purpose. Increasingly over the last 18 months, the question has been pressed as to whether we should have ready a “Plan B”, an alternative site, perhaps even in another Borough, in the event that securing a long lease should not be granted within a reasonable time scale. 113 http://andrew-sutton.blogspot.com/2008/02/standing-up-for-mum.html 114 http://www.niassembly.gov.uk/orders/papers/2007/order38_0708.htm

Such a course is entirely prudent. But it deflects limited resources, occupies people's time and attention, away from our core purpose, from the things that matter. It will be interesting to see, should the lease terms be approved on Wednesday, whether the siren-call of a Plan B simply evaporates, as we all feel the release to concentrate once more on what matters. I feel sure the people at Buddy Bear School must wish for the same.

eCOMMUNICATIONS -------- TITLE: A Paces' MindMap CATEGORY: Web2.0, Participation and eDemocracy CATEGORY: Paces' Futures DATE: 09/26/2007 10:58:14 PM The opportunities for third sector organisations presented by Web2.0 eCommunications tools increasingly interest me. As well as exploring, here, how I might use a blog, I have also been looking into the application of MindMaps115. I first began trying to capture some key aspects of the Paces' project, “from where I sit”: the Strategic Plan; Paces' activities; and my Web2.0 investigations. Following the adoption by Trustees on Monday of our Strategic Plan 2007-12, (which we drafted collaboratively using a private wiki), I have tonight begun to revise what I had already MindMapped and to add a new Networks section. I do not know if all MindMapping tools are more or less the same, but I find MindMeister simple to work with if rather frustrating in some respects: visually it's rather dull, being very angular; the text colours are not bright enough; inserting new ideas in existing strings seems not easily possible; moving whole strings is not possible. If it were in 3D, with the potential for multi-linear links, that would be impressive. Might such a tool exist? I long ago came across a thesaurus which did something similar. However, the MindMapping exercise is quite thought-provoking - about one's priorities, work load and interests as a CEO. Of course, I need to take the next step with both this blog and the MindMap and open them up to collaboration. -------- TITLE: Web2.0, Participation and eDemocracy CATEGORY: Web2.0, Participation and eDemocracy DATE: 10/17/2007 10:02:10 PM This post does not sit easily within an existing Category. Actually, though, it does fit well with our Strategic Plan' Key Output to create a Communication Plan. But mostly I just wanted to note a fine article I came across under the self-explanatory title “Some Lessons from Web2.0 for Participation and E-democracy116” under the names of Lee Bryant and David Wilcox, plus a couple of related links I noted about the same time. Noting that “most research into why participation is not generating the hoped-for results and levels of engagement” the article points to three key groups of issues and to an August 2005 report of a study “Effective participation in anti-poverty and regeneration work and research” on the Joseph Rowntree Foundation117 web site which underlines the importance of participation “of people with direct experience” - in this case, of poverty and regeneration. But the point is widely applicable. The study, by Peter Beresford and Martin Hoban, drew 6 conclusions that have wider application to participation generally: - Powerlessness is central to people's experience of poverty and disadvantage.

Conventional bureaucratic and managerial 'top-down' approaches to participation have very limited success

- Existing experience identifies barriers to people's participation at four levels: personal; political and institutional; economic and cultural; and technical. All need to be addressed

115 http://www.mindmeister.com/maps/show/1693939 116 http://www.headshift.com/archives/002787.cfm 117 http://www.jrf.org.uk/knowledge/findings/socialpolicy/0395.asp

for participation to work. - People are much more likely to get involved in work if they have a strong sense that

something tangible and worthwhile will come out of it. - Supporting independent organisations which people themselves develop and control, at

local level and beyond, is a vital building block for effective participation. - Capacity building to develop people's confidence, self-esteem and understanding

supports their empowerment and participation. It is not the same as skill development to equip people to work in the way that agencies traditionally work.

- Such capacity building is particularly helpful in encouraging diverse involvement and ensuring the participation of black and minority ethnic groups.

This is a drum on which I have been beating for quite a while and am encouraged not to be alone. There was a short follow-up by David Wilcox a few days after the posting by Lee Bryant,. David Wilcox also writes an interesting blog “Designing for Civil Society118”, “mainly about engagement and collaboration using social media”. Later in the year, in December 2006, David posted a further related note (and provided more food for thought through further links), entitled “Social Media Supports the Shadow Side119.” “Faced with questions about why blogs and other social media can make a difference to the way organisations work I haven't got much beyond they challenge hierarchies internally if people share information informally, and they punch a hole in the membrane between the organisation and members or customers. They also encourage conversations and storytelling ... help people find a voice and new roles. These issues were discussed a lot at the recent Gurteen Knowledge cafe120 and continue to be raised on the Gurteen forum121 What I have lacked is some ways of tying these ideas together - now neatly provided by Lloyd Davis in “It's Social Stupid”122, which David goes on to quote at length, and which is well worth reading as well as introducing another fascinating blog, Perfect Path. on using “social forms of media such as blogs, wikis, podcasts and videoblogs123”. -------- TITLE: Public services and Web2.0 CATEGORY: Web2.0, Participation and eDemocracy DATE: 10/22/2007 08:19:35 AM The blog at Sharp Brains continuously provides food for thought. A recent posting alerted me to a blog carnival of the best posts pertaining to web 2.0 and medicine124”. Medicine 2.0 - “how web 2.0 interacts with the medical field125”. Inevitably this opens up a whole world of new links, such as the Medical2.0 blog126, which points to Medical 2.0127 “a new platform/ service for physicians, researchers, other professionals in the fields of medicine and biological science ..... a directory that aggregate applications, platforms and websites that their content are on the fields of medicine and life science and they are based on web 2.0 tools”; which, in turn, points to PeerClip128, very similar to ClipMarks129, but “exclusively for physicians, physician assistants and nurse practitioners”: “an efficient way to store important medical information coming from a variety

118 http://www.partnershipsonline.org.uk/index.cfm?fuseaction=main.viewBlogEntry&intMTEntryID=2878 119 http://partnerships.typepad.com/civic/2006/12/social_media_su.html 120 http://partnerships.typepad.com/civic/2006/11/need_some_knowl.html 121 http://groups.google.com/group/gurteen 122 http://feeds.feedburner.com/%7Er/PerfectPath/%7E3/57738378/its_social_stup.html 123 http://perfectpath.wordpress.com 124 http://www.highlighthealth.info/articles/medicine-20-number-10.php 125 http://en.wikipedia.org/wiki/Blog_Carnival 126 http://blog.medical20.com 127 http://medical20.com 128 http://peerclip.com, 129 http://clipmarks.com

of online resources. With PeerClip, physicians are able to quickly capture key information in a central location while gaining insight from the collective intelligence of their peers”. Another world of links it opens up is through Health2.0130 which turns out to be a wiki “set up as a service to the community of visionaries, entrepreneurs, intrapreneurs, policy makers, and professionals who are working on fundamentally redefining the healthcare industry, along the lines of Web 2.0”. This movement was initiated at the first Health Camp, which took place in December 2006 in San Francisco, CA.” Now, I'm not especially interested in medicine or health from these particular perspectives, but I am interested in examples of how Web2.0 is coming to be used. I notice that these tools are mostly for professionals, not customers, clients or users of Public Services And that is an area that does interest me. The launch last Wednesday (17th October 2007) of Sheffield's strategy for adults with learning disabilities, “A Good Life”, is a case in point. Setting off a “consultation”, the strategy is not posted on the website, nor was even an electronic version available by email The launch was a very traditional event in a very familiar, officer-led, process. Whatever efforts officers make to consult with service users, Web2.0 - based on communities and collaboration - offers so much more in participation and eDemocracy, the means to influence strategically those services which impact on our lives. A footnote to this posting: also worth a quick look, together with the Comments it attracted – “An Open Letter to the Physicians of the World” posted just a few days ago, on 6 October 2007, by Bertalan Mesk, a medical student at the Medical and Health Centre of the University of Debrecen, Hungary131. -------- TITLE: And while you're at it .... CATEGORY: Web2.0, Participation and eDemocracy DATE: 02/27/2008 07:04:32 PM Coincidentally with my previous ePetition posting132, I have notice of another campaigning action you can take while you're at it ... this from the Every Disabled Child Matters people, via a colleague “Do you live in one of the 51 councils signed up to the EDCM Local Authority Charter? If so, we need you to make sure your council delivers on the key commitment they made when they signed the Charter - to make disabled children a local priority. Please take a few moments to go to the EDCM Local Authority Charter website133 and take Action 1. If you live in a Council which has not yet signed up, get them to sign! Go to the website and take Action 2. You can check if your council has signed up using the lists at the top of the page. The decisions about which issues will be local priorities are being taken right now. Please take action to make disabled children matter in your area. Also - EDCM is supporting the Special Education Needs (Information) Bill, sponsored by Sharon Hodgson MP. You can support the Bill too by emailing your MP - find out how from our news story134. Go on! Do it! You know you want to”.

130 http://health20.org/wiki/Main_Page 131 http://scienceroll.com/2007/10/06/open-letter-to-the-physicians-of-the-world 132 http://paces.typepad.com/paces/2008/02/epetition---cer.html 133 http://www.edcm.org.uk/la_charter 134 http://www.edcm.org.uk/Page.asp?originx_4729f84637792014498w62n_2008117542l.”

THE FELLOWSHIP JOURNEY CONTINUES. The Fellowship informed the final draft of Paces’ Strategic Plan for 2008-2013, which was adopted by the Trustees at their September 2008 meeting. A key element of that plan was the transformation of the charity from a regional to a national one, with a world-class’ reputation. This will involve broader and deeper conversations with all the charity’s stakeholders, across public, private and academic sectors. These conversations will, in some cases be challenging, as we address the themes that came out of the Fellowship and the study tour. More personally, I intend that my Fellowship journey will continue as I become involved as a Fellow with others. I look forward to attending my first meeting of the East Pennine Association. Norman Perrin March 2008.