Janet O'Keefe, Speech and Language Therapist

 Parents of children with special education needs and the professionals who support them attended a national conference, Towards a Positive Future,  in Newbury on Saturday, 16 June.

Speakers included Jane Asher,  President of the National Autistic Society, who spoke to the gathering at the Arlington Arts Centre, Mary Hare School, and said afterwards:

 “At a time when the procedures for families of those with autism and other conditions are in a state of flux, it’s more important than ever for those affected to have access to information that will help them access the support services they need. This Wordswell conference impressed me enormously with its range of speakers, and the professionalism and knowledge exhibited by them: I found it extremely interesting and was honoured to be a small part of the day – I’m sure all those attending found it as informative and useful as I did.

‘One of the biggest problems that we hear about at the National Autistic Society is that of accessing the right school for a child with autism. From getting a diagnosis in the first place, via the difficulties of getting a statement through to the minefield of having to go to tribunal against the Local Authority, every step of the way can be fraught with tension, unhappiness and despair. All of us who are involved in the world of special educational needs are waiting to see just how the proposed changes to the system will turn out, and whether they will improve the current complex and often ineffectual situation.

“Janet and her colleagues are extremely well informed about this area, and her new book, Towards a Positive Future, contains a wealth of information, based on her own experience and that of relevant case studies, about what it’s like to be on the other end of the system and how tricky it can be to negotiate.”

Organiser Janet O’Keefe, who founded Wordswell Speech and Language Therapy Services in Cambridgeshire, and is an expert witness for families at appeal tribunals, said their second annual conference at the Arlington Arts Centre had been very successful:

“We are tremendously grateful to Jane Asher for her support, and for our excellent expert speakers too. Without exception, the range of speakers and presenters at this year’s Towards a Positive Future conference were exceptional and all the delegates feedback is overwhelmingly positive. Parents and professionals learned much from each others experiences, and particularly those parents who have had previously bad experiences feel a sense of renewed hope for their children as they realise there are passionate, knowledgeable and caring professionals working in the field of SEN.”

Some of the topics covered by expert speakers included the government’s planned reforms for SEN, how the care system was failing vulnerable young people who disappear or die in care before the age of 25, as well as the parent perspective and writing SEN statements.

In addition, there were 12 seminars covering social skills, speech language and communication needs, dyslexia, deafness, acquired brain injury, NLP, Down Syndrome and autism.

We hope to offer these presentations in a webinar and e-course soon so they are available to a wider audience and make the conference an annual event.  Please put 19th June 2013 in your diaries now.  Venue tbc but is likely to be Central London (and 2014 in Birmingham).

Yesterday we attended a Special Educational Needs and Disability Tribunal.  Not unusual as I often appear with parents as an Expert Speech and Language Therapy Witness but yesterday I went with my parent hat on.  Our child is a delightful, happy and loving child who has to cope on a daily basis with a complex cocktail of competing symptoms. He does it all with a smile as long as he has at least one adult’s sole and undivided attention which is not how most 8-9 year olds function.

 The surgery he has is palliative. We do not know what his life expectancy is. However, all we have ever set out to do is to provide him with as normal a life as possible and as happy a life as possible for as long as possible.

 It is easy to forget how ill he is when most of the time he looks so normal and appears so alert we believe because his heart condition is masked by his ADHD.

He is described in the Tribunal papers as a lively and busy boy who wants to run around and be the same as the others in his class. He knows the script and he can tell you about his heart condition and frequently chooses this as his show and tell topic! He can tell you that he can’t weight bare with his arms but then runs off to try to climb or do yoga poses so he has to have 1:1 to keep him safe!  He is also physically small for his age compared to his same-aged peers.  

Although we are now special guardians, we are applying to adopt him because it has become very clear that he needs us to do that for his security and identity and to progress in his mental health and future resilience.  It is impossible to leave him with anyone who does not know him well because of the complexity of his needs but we need the respite because he is exhausting to be with due to his emotional needs arising from his attachment disorder.

 He does have a short attention span, he is easily distracted, he doesn’t finish things, he is disorganised, he fidgets and fiddles, he talks too much and can’t wait his turn. His behaviour disrupts his life and well being. He is impulsive. There is evidence that this occurs in all settings and with all people. He cannot inhibit it. Both at school and at home the behaviours are well managed but if you take away his 1:1 support his behaviour quickly becomes life threatening and dangerous to him and others.  He is very active for a child with such a severe heart condition.

 He attends an outstanding Primary School with a fantastic Head Teacher, but it is a large busy school and there are many occasions when we consider that they feel he is just too much trouble and his original statement was not ever fully implemented. When he started there we were told that he was achieving at an average level for his peer group for reading, spelling and comprehension and at a below average level for writing, speaking and listening. We sought a review and a statutory re-assessment in order to increase the provision in his statement to include learning objectives and help with literacy and numeracy. We did not expect the County Resourcing Panel to strip out the provision which was and continues to be appropriate from the original statement including an Occupational Therapy programme and Clinical Psychology oversight of his behaviour programme.  He does not appear to have made very much if any measurable progress in his National Curriculum levels between January 2011 and February 2012.

 If he only had his heart condition he may not even need a statement. It is not his heart condition that is stopping him from learning and behaving normally. It is the combination of the heart condition with hyperkinesis which mask eachother, whatever their respective causes and overarching both of these are his severe and complex mental health needs (anxiety and attachment disorder) for which he needs and receives weekly psychotherapy from CAMHS. My husband and I wish with all our whole hearts that this was not the case but it is.

The LA questioning these diagnoses does not make us doubt them at all but it does make us question the motivation of the LA in so doing.  We and our expert witnesses were questioned for 6 hours.  We now await the judgement of the panel as to what they believe they can order to be in his statement as an educational need. 

A recent Freedom for Information search has revealed that Cambridgeshire County Council has paid £3500 in legal fees in each of 7 cases this year where parents have appealed against the contents of a statement of SEN for their child.  If you add this to the cost to the public purse of the Expert Tribunal Panel, the administration and court fee which is likely to be another £3000 is the cost really justified? In our case the extra provision we were asking to be included in the statement would at most have cost the LA an additional £420-£450 a year as most of it is either already provided or provided free by the NHS.   

I am lucky that I have expert witness colleagues who supported me pro bono as did Inez Brown of Harrison Clark Solicitors.  Most families do not.  Some families are eligible for Legal Help.  Most are not.  In Cambridgeshire it would appear that if you are articulate parents who have a higher degree the LA will resist your appeal with solicitors even if your requests are reasonable and supported by all the professionals who work with your child on a daily basis.  I would really like to know why the LA officers do not negotiate with parents directly and provide what the child needs as I thought that was their job. 

Without expensive experts and solicitors or barristers parents have to represent themselves at the cost of many sleepless nights and the stress of appearing in a Magistrates Court.  The LA rely upon the fact that most parents do not have the skills, resilience or resources to use this appeal process and achieve the education that children with disabilities need to access the curriculum and stand any chance of achieving academically or in life. 

This is the reason that last year I wrote ‘Towards a Positive Future: stories, ideas and inspirtation from children with special educational needs, their families and professionals’ published by J & R Press and the second conference of the same name is happening on Saturday 16th June 2012 at Arlington Arts Centre, Mary Hare School, Newbury, Berkshire http://www.wordswell.co.uk/tapf-conference-2012/

It may also help Tribunal Panel Chairs and Lay Members get an insight as to the effects of their decisions on children and their families.

Please join Jane Asher, President of the National Autistic Society, and I, share your story and find the support and information you need to support your child and navigate this system and the new one being proposed.  Tickets cost £45 for parents and £90 for professionals.

When you come to Wordswell for speech and language therapy for yourself or your child, our therapists will listen to you and establish with you a really clear outcome for therapy.  All our therapists attend a 4 day NLP Diploma course with Vievolve as early in their employment with us as possible and always within their first year.  This develops their ability to notice what is happening in interaction, both verbal and non-verbal, have flexibility within and between therapy sessions and build a deep rapport with you and/or your child in order to maximise progress and the effectiveness of therapy.  Albert Mehrabian in 1972 published research from controlled experiements that demonstrated that non-verbal signals are significantly more influential than other stimuli.  In his work Mehrabian concentrated on the face as the source of non-verbal information.  Other researchers have since demonstrated similar results with non-verbal data including the elements of posture, gestures and so on.  The key message is that 93% of our ability to communicate is not the words that we use.  38% is intonation, tone, accent, rhythm, pauses and stresses and 55% is facial expression, eye movements, muscle movements and skin colour.  It is therefore impossible for individuals, even if non-verbal, to not communicate.  With this in mind we know that the environment that speech and language therapy occurs in will greatly influence the effectiveness of that therapy.  We have therefore developed a really clear visual identity for our therapists and the therapy materials we use based on the senses of sight, hearing, touch, taste, and smell.  We work closely with our Occupational Therapy colleagues to also incorporate appropriate movement and ensure that we are enhancing and developing self regulation of sensory processing rather than over stimulating.  Whenever possible out therapists wear clothing and use equipment that incorporate our colours of purple/lavender, yellow/gold/lemon and cream.  We have identity badges and lanyards and a striking Wordswell logo which incorporates shape and texture too.  The beginning and end of therapy is signalled by an auditory tone and the room and materials smell of our unique lavender, lemon and vanilla blend of scents from Busy Bee Candles.

Effective therapeutic interventions, in any discipline, have always depended on a careful identification of the factors comprising the presenting problem; the systemic processes shaping, and shaped by, the child; and the information and belief structures supporting the coping strategies developed as a result. For the Speech and Language Therapist, difficulties in the acquisition of social communication skills frequently signals the presence of a wider range of language, emotional and educational issues, all of which could be impacting on the child`s potential for independence, integration in society, educational attainment and long- term mental health. As a result, social communication work is often an integral part of programme delivery, and much time and energy has been devoted to the development of the many excellent resources available to address social communication needs in a range of settings and client- groups.
Shapwick School is a specialist day and boarding school for pupils (8yrs – 19yrs) with dyslexia, DCD, ADHD, developmental verbal dyspraxia, sensory processing difficulties and other related disorders. Approximately 70% of our pupils attend weekly individual and/or group Occupational and Speech and Language Therapy sessions and all new students are screened by both therapies on entry. The Therapies are seen as an integral part of the school`s multi-disciplinary approach to the educational process and are involved in all aspects of the school`s functioning. We take the view that, while language and sensory processing difficulties impact on every aspect of our students` lives, they can be remediated or compensated for most effectively when a unified approach is applied by the whole system- school/ college, parents, students and their peer group. Systemic thinking is by no means new in education or therapy, but its application often presents a thornier issue as daily life interferes with theory! I feel it is vital that we at least acknowledge that every decision or action we take, as teachers, clinicians or parents, will have a knock-on effect on every other aspect of our children’s provision, and ultimately the child’s decision- making. As social communication is about making decisions which affect oneself and others, the ability to recognise chains of reaction is a cornerstone of the SCAEP approach.
The Social Competence and Enhancement Programme (SCAEP) was formally introduced about 8 years ago as a weekly group session for students with identified social skills difficulties. It drew on a range of materials from published social skills, emotional literacy and pragmatics programmes and ran for two terms every year. Other forms of medium and short- term interventions (e.g. Circle of Friends; “Pitstop” ) were also regularly used in the rest of the school in response to perceived need, but varied from year to year and were often driven by the needs of specific pupils or contexts.
However, over the last 5 years I have become increasingly aware of three important factors which seem to be impacting on the long- term carryover that our students achieve in real- life situations, when trying to apply the principles they have worked on in SCAEP group viz. 1) In many cases the severity of their sensory processing problems, literacy, working memory and language needs interferes with their access to language- based social skills interventions. Co-working between Occupational Therapy and Speech and Language is becoming increasingly vital in laying the sensory processing groundwork to support our social communication work across the school. 2) Our students have marked difficulties in connecting the ideas and concepts contained in social skills programmes with their own understanding of how the world works. Many of them have difficulties with theory of mind, but also with basic semantic issues such as categorisation, so that identifying social similarities and differences becomes a language test rather than a coping strategy. These difficulties appear to have a particular impact in Yrs 8/9, when the opinions of the peer group assume primary importance, and has resulted in the complete reworking of SCAEP delivery at Shapwick School. 3) At the same time, there is an increasingly alarming body of research emerging from different clinical, psychiatric, educational and criminological fields indicating a significantly high incidence of literacy, social communication and language difficulties amongst young people with severe mental health problems and in the justice system. My concern is that if the sensory processing problems of our students have such a fundamental effect on the development of their cognitive constructs, and if many of our students cannot fully access remediation programmes on offer because of language difficulties, then they are also prevented from accessing the mainstream talking therapies on offer in the NHS. This raises the issue of where our students will go for support as adults.
In the current climate of continuous cost- led reform, there is a temptation to sit tight, rely on existing resources and protect our personal fields of influence. It is vital that we do not lose sight of the fact that our disciplines exist as a result of need, and that meeting those needs continues to rely on an expanding knowledge- base and willingness to share, adapt and apply principles from related fields in order to fine- tune our work and counteract some of the effects of continuous instability in the systems we live and work in.
My workshop will outline the key features of the SCAEP programme and describe an attempt (in progress!) to design a multidisciplinary intervention which serves three purposes: 1)Taking students back through the sensory building blocks of basic social communication concepts e.g. personal space, in order to construct more complete concepts /schemas based on sensory processing of, and shared attention to, key sensory characteristics; 2) The development of sensory and language correlates (shared code) needed to describe participants’ experiences of (mis)communication and to develop verbal problem- solving strategies and an understanding of chain reactions; 3) The core language and sensory building blocks to understand analogy and metaphor, allowing students to compare how a situation appears to them and someone else, and improving our students` potential use of talking therapies e.g. CBT, family therapy etc.

“Update on Special Educational Needs and DISability Tribunal Regulations”

28th July 2009 at 9.30am – 4pm

Location: Anthony Collins Solicitors, 134 Edmund Street, Birmingham, B3 2ES, (within walking distance of New Street Train Station)

Speaking will be:

John Friel, Barrister of Hardwicke Building

“…good technical knowledge.” – Chambers UK (2009)

“…achieves success in cases that may not appear so strong on paper.” – The Legal 500 (2008)

John is featured in Legal 500 and Chambers UK as an Education Law specialist.

Inez Brown, Solicitor of Anthony Collins

Inez leads on the educational support for individuals. She has vast experience in educational matters providing support on statutory assessment of children with special educational needs and admission/exclusion issues arising from maintained schools.

Melinda Nettleton, Solicitor of SEN Legal

Melinda qualified as a solicitor in 1980 working initially for a local authority and then for the Crown Prosecution Service. She specialized in litigation (evidence and advocacy).  Melinda has three children, one of whom has dyslexia, dyspraxia, and a severe language disorder.

Janet O’Keefe, Speech and Language Therapist, Wordswell Ltd and Chair of the MLSIG

 Janet has specialised in working with children and adults with hearing impairment, autistic spectrum disorder and dyslexia.

If you would like to attend, please email MLSIG@wordswell.co.uk to register your interest.

  You can pay in advance by posting a cheque for £25, made payable to “MLSIG” to Wordswell, 82 Cannon Street, Little Downham, Ely, Cambs, CB6 2SS.

For further information, please do not hesitate to get in contact.

Brian Keenan

Let me explain how I came up with the name.  To be fair, I didn’t come up with the name. Brian Keenan did. 

In April of 1986 Brian Keenan was an unknown university teacher from Belfast until he was seized by Muslim gunmen in Beirut, Lebanon and became their hostage for nearly 5 years.

I met Brian in Henley in 1997 and wrote to him asking him to name the building I was constructing to work from. This is the letter he wrote in return:

“I thought a lot about this. So for what it is worth, here it is. I focussed on the notion of a language therapist being a kind of WORD smith – like a blacksmith! For some reason the wooden building and the work being done there made me think of a NUT. But the Nuthouse would be entirely inappropriate!!! My wife, who is a physiotherapist suggested “awakenings” as you awaken up the lost but residual capacity in people. I thought “The Wakenings” might be a good name for the place but it’s hardly a corporate term. – Awakenings or Wakenings might be more suitable. But still that didn’t suit my own “draw” on things. I went back to my original thought about blacksmiths, and foundries and workshops. I liked the term “Smithy” – a place where new forms are created. But I also liked the notion of a well, a permanent place of substance – we draw from the well, water, life perhaps meaning. I thought of something like “Holywell” being the well of nourishment and Holy, meaning to make whole. So it became “The Holywell Clinic”. Still I wasn’t sure and juggled again in my Blacksmith’s forge and finally came up with “WORDSWELL”. It has a plethora of associations for me too long for me to elaborate, but that’s what I resolved on. It may not be up your street but it seems to me to have a corporate and personal ring to it. It also “fixes” exactly what you do – I think!”

Thank you Brian.