Janet O'Keefe

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.

First let me declare an interest: Tania Tirraoro the award-finalist writer who hosts this blog is a good friend and a professional contact.  She and I trained together as journalists on the South Cornish coast way back in 1988.  Back then, Tania was vivacious, tenacious and keen to get on.  More than two decades later, absolutely nothing has changed.  Or has it?

Bringing up two boys with Asperger’s has directed her considerable energies into the field of special needs education.  As someone who spent most of his childhood at special boarding schools, she has asked me to share a few thoughts about my experiences and about the current debate about special schools vs. inclusive education.

Geoff Adams-Spink

I was born half a century ago with disabilities caused by the morning sickness drug, thalidomide.  The drug left me with extremely short arms, flipper-like hands and very limited vision in the one eye that I have – the other is completely absent.

Back then, children with physical disabilities were destined for special schools – mainstream either wasn’t geared up or wasn’t prepared to gear up to support us.  My parents were told in no uncertain terms that my safety couldn’t be guaranteed if I attended the same local schools that had served my two sisters and my brother perfectly well.

So, aged five, I was packed off to Penhurst school in Oxfordshire which was run by NCH – now NCH, Action for Children.  I recently revisited the place and found it transformed.  It no longer supports children with the sort of disabilities I have.  All of the students have profound and multiple learning disabilities or PMLD.  The 26 children require intensive support from the 150 or so staff.  The cost of a place there can only be guessed at.

And this has set me thinking about the current debate about special needs vs. inclusive education.  It seems to me entirely ridiculous that anyone should assume that one approach should be adopted exclusively.  If we are, in the words of a former Secretary of State for Education to “respond to the needs of the child” there is surely room for a mixed economy.  Plenty of children – myself included – would probably manage perfectly well in mainstream education with a few minor adjustments.  Others would be left in the margins and need the specialist support of staff who know how to encourage children with different needs to achieve their potential.

This is not simply about physical compared with learning disabilities: two children with, superficially, the same level of impairment could well require different responses from the system.  My nephew, for example, has Asperger’s and managed quite well in mainstream education.  But he has the benefit of supportive parents who have equipped him with the knowledge to know how to regulate his behaviour and manage his condition.  He’s also a big strapping lad who has no shortage of confidence.  Another child with the same level of Asperger’s may well struggle in the same environment.

Is there life after special education?  You bet!  I out-grew Penhurst quite quickly and was sent to another boarding school aged eight.  This establishment had an approach that – at the time – was quite revolutionary: that disabled children (the majority were vision impaired though some had physical disabilities as well) should be encouraged to acquire certificated qualifications.  I left the place after nine years with eight O-Levels and went on to study for A-Levels at an FE college and then on to university.

So how have mine and Tania Tirraoro’s paths crossed again?  Tania is now an expert in the use of social media.  After 22 years working as a BBC journalist, I am now Chairman of a European organisation that represents people with limb difference.  We have an ambitious project to create a global network of those affected by dysmelia (as limb difference is officially known) and to link this network with a knowledge base and another network of dysmelia experts.  Spreading the word using social media is a no-brainer.  And our choice of Tania to establish our social media networks to help us achieve our goal was equally simple.

On Monday May 21, Tania is helping us to launch DysNet – an online community that will help people to conduct conversations in five languages. We’ll have a knowledge-sharing website and a secure community forum on RareConnect, run by EURORDIS & NORD, the world’s leading rare disease organisations.

I wonder whether, when my distraught mother left me at Penhurst for the first time, she had any idea that her son would get so much from his special education.

First published as a blog post by Tania Tirraoro on Special Needs Jungle 21.5.2012

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.

The Social Competence and Enhancement Programme (SCAEP) was formally introduced at Shapwick School in Somerset, a specialist school for children with severe dyslexia, 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.

Many of the students 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.

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.

Sandy’s workshop at this years Towards a Positive Future Conference on 16th June 2012 will outline the key features of the SCAEP programme and describe 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

Book your place NOW to hear Sandy and learn about this new and exciting approach to teaching social skills.

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.

We are delighted that Sue Madraszek of Symbol UK will be presenting at the Towards a Positive Future Conference on 16th June 2012 http://www.wordswell.co.uk/

Sue’s presentation will give information about the typical communication profile of children and young people with Down syndrome. It will explore the implications this has on how parents, health care staff and educators should interact with these children and young people in order to develop their full potential in the field of communication and thus enable them to access educational and other settings successfully.  Participants will gain knowledge about this population of children and young people and be shown some very simple ways of making interaction with the children and young people more effective as well as learning about how to encourage these children and young people to communicate effectively, thus achieving their communication potential and supporting them in reaching their potential educationally and socially.