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.

As an SLT working both for the NHS, Privately and for a major Charity I must say a huge thank you for all the time you have invested writing this book.

Put simply it’s a fantastic reference point for any professional working with children and adolescents with SEN and their families.

I like how the vastly complicated process of statementing is clearly described in terms of not simply what happens but when it should happen. When I was a newly qualified SLT I wish I had such a resource to refer back to as it has taken years of experience to get my head around (and I still don’t feel overly confident). I will definitely recommend this resource to NQT (and experienced) professionals who work with children with SEN.

Whilst the book does not expect a particular level of prior understanding of SEN having some certainly helps. The majority of (affected) families greet having more information on the SEN ‘with open arms’ however I do feel that due to the complexity of the process, and hence the complexity of the book itself, it is not accessible to all families. Personally I would recommend reading particular chapters to some of my families and the whole book to others.

I think the icing of the cake are the inspirational stories. Whilst they are heart breaking at points, the positive messages found are clear. I like the way they are categorised into SLCN diagnoses/disorders as it helps the reader to relate to particular children they know.

Finally, with all the cuts and changes happening across the UK it is very easy to become disillusioned; the ‘making it happen’ has lit my fire of enthusiasm and I can’t wait to go into work tomorrow and begin to make a difference!

by Chris Wade