Janet O'Keefe, Speech and Language Therapist

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Statistics published by the Department for Education today show that pupils with statements are nine times more likes to be permanently excluded from school than those pupils without any SEN. Meanwhile, the number of pupils with statements of SEN receiving one or more fixed period exclusions is six times higher than for pupils with no SEN. The Statistical First Release (SFR) provides information about exclusions from schools and exclusion appeals in England during 2010/11. It reports national trends in the number of permanent and fixed-period exclusions together with information on the characteristics of excluded pupils such as age, gender, ethnicity, free school meal eligibility, and special educational needs (SEN) as well as the reasons for exclusion. The key points from the latest release are: There were 5080 permanent exclusions from state-funded primary, state-funded secondary and all special schools in 2010/11. In 2010/11 there were 271,980 fixed-period exclusions from state-funded secondary schools, 37,790 fixed-period exclusions from state-funded primary schools and 14,340-fixed period exclusions from special schools. The average length of a fixed-period exclusion in state-funded secondary schools was 2.4 days, for state-funded primary schools the average length of a fixed-period exclusion was 2.1 days. The permanent exclusion rate for boys was approximately three times higher than that for girls. The fixed-period exclusion rate for boys was almost three times higher than that for girls. Pupils with SEN with statements are around nine times more likely to be permanently excluded than those pupils with no SEN. Children who are eligible for free school meals are nearly four times more likely to receive a permanent exclusion and around three times more likely to receive a fixed-period exclusion than children who are not eligible for free school meals. What are we to make of these statistics?

A mainstream school it would seem is, quite often, unable to cope with the high level of demands placed upon it by children with special educational needs and challenging behaviour and for these children, inclusion is the last thing they need. They need a specialised environment that can help them overcome difficulties of background or learning style or hidden disability so they have the same chance of a successful life as everyone else. Timely intervention is crucial for these children so that they can be identified and assisted long before things get to the stage of an exclusion being considered. When thinking specifically of children with statements, I wonder what percentage of these SEN children, or of children with SEN but without statements, were excluded for persistent disruptive behaviour compared to the other reasons above. A child displaying persistent disruptive behaviour almost certainly has underlying issues, whether BESD, ADHD, ASD etc, that prevents them from accessing the curriculum and hence makes them feel that school is a waste of time. A large percentage were also recipients of free school meals, which also indicates that poor children (with or without SEN) are hugely at risk of not getting the support they need in a mainstream school environment. Many may come from difficult family backgrounds and would be much more suited to a nurture group environment such as those set up by child psychologist Charlie Mead, if only they existed more widely.   See http://www.wordswell.co.uk/tapf-conference/october-charlie-mead.php

There is much interesting analysis that can be taken from these stats aside from the startling SEN figures, for example the comparatively high ratio of exclusions for traveller children (who may or may not have SEN). These would take far more time to ponder than I have available, but I hope someone does and lets me know.

First published by Tania Tirraoro on Special Needs Jungle where you will find links to all the stats

 Today Tania Tirraoro of Special Needs Jungle has continued her post regarding the presentation by Charlie Mead, Educational and Child Psychologist at the Towards a Positive Future SEN conference on 16th June 2012.

‘He spoke powerfully about the plight of these ‘Looked After Children’ or, as it would appear, not very well looked after children. Charlie works in many children’s homes in the Midlands and South West of England and if you want to know about how he sees the state of provision of children in care – our most vulnerable members of society – please read on, share it, reblog it, quote it on your own blogs, anything you can do to help highlight it. ‘

“Children are being ignored, abandoned and abused within the care system. The tension between available finances and how they are spent is at the cost of children’s development. Children in care are some of the most vulnerable people in this country yet they are given no more priority (in many cases less) than privileged young people from stable and wealthy backgrounds. They are denied access to the basic rights of most children. The right to security, protection, opportunity and equality.

We now have over 73,000 children in care in England and Wales – but we are losing some every day. Sometimes physically – they disappear; but also socially and emotionally. We lose them as potential contributors to society – as ‘net gain adults’ in HMRC speak. The number is an increase of 12 per cent since 2008 and rising since the case of Peter Connolly.

■56% of all children in care are there because they were abused or neglected

 ■26% are in children’s homes.

■That means more than 17,000 are looked after in children’s homes or accommodated in institutions (LA or Private), while the rest are in foster care.

■More than half of all children in care (53%) leave school with no formal qualifications

■13% get 5 A*- C grade GCSEs, compared with 47% of all children.

■6% enter higher education.

■20% of women who leave care between the ages of 16 and 19 become mothers within a year, compared with just 5% of the total population.

Parents who have been through the care system are twice as likely to lose the right to care for their own children.

I’ve seen cases of 14 year old girls serially sexually abused; criminalised boys; neglected young people; children who were heroin addicts from birth. But they DO have a voice and they let it be heard – believe me. They know what they want. And it isn’t institutionalised living. They want opportunities to develop relationships to build their own lives. So, I am asking why we can’t and won’t protect, educate and cherish children in care as our own? They have already experienced degrees of rejection and loss of control hard for others to imagine, before the system neglects their needs to the point of losing them altogether. In the area I work these are the most vulnerable groups of children – many do not have a voice of their own and their parents are ignored or dismissed, especially if they have learning difficulties or addictive behaviours of their own. Their social workers are ignored, their care workers are ignored… They don’t have the “opportunity-language” even if they were to be listened to…..they do not have the leverage. They have become part of the system as soon as the system decides they should be!

All children need: safety; security; health; continuity; routines; knowledge; opportunities; equality.

■73 %of school age looked after children have some form of special educational needs – especially social, emotional and behaviour difficulties

■In the 2009/10 school year, 130 children who had been looked after continuously were permanently excluded from school.

■7.9 % of looked after children who were aged 10 or over had been convicted or subject to a final warning or reprimand during the year

■4.3 % were identified as having a substance misuse problem during the year 2010.

Why are these simple basic rights not only denied children in care but are routinely flouted by a whole range of agencies? Even safeguarding issues are ignored if Duty Officers and social workers make wrong decisions based on lack of knowledge – and then D.O decisions are rarely rescinded

For example:

■The child who is allowed to return to their abusive and neglectful parents because they have made significant progress in care and the money is tight.

■The child who absconds, arrives home and is left there because there are no Social Workers on duty.

What is it that makes adults lack any sense of what they are doing and abdicate responsibility for the care of children.? Much of the answer lies in the stories of the children themselves. As a psychologist, I am driven by empirical evidence that is usually supported by strong theoretical hypotheses. In this case it is my theories that have been formulated and are driven by observable and measurable data taken from the circumstances around children in care. So, what evidence is there? These are the circumstances of just nine of the children that I am currently working with – when we can find some of them. They reflect the overall pattern and range of difficulties they face – some made more so by the response of adults who should be providing them with opportunities – not further rejection.

■Child 1: Secure unit – Children’s Home – disappeared

■Child 2: Looked After Child – drug runner – sexually exploited

■Child 3: Subject of physical abuse from boyfriend

■Child 4: Missed schooling – now costs the authority £1,500 a week

■Child 5: Withdrawn, self-harmer – low self-esteem

■Child 6: Sexually abused, absconds – returned home

■Child 7: No awareness of risk – in independent living

■Child 8: Intelligent – but no school will take her

■Child 9: Neglected, also bright – no support available

Where does it all go wrong? They have parents who are addicts or criminals, they are abused and have early exposure to that abuse and to criminality. For example two year old girls sold for drugs, five year olds who rob and steal. They live in an environment where failure, abuse and lack of normal behaviours are normal. They have a very low socio-economic status. The full range of normal opportunities can be denied children and they are constantly being rejected. And rejection results directly in lack of control…

Examples include:

■Failed parenting – even though children might not realise it at the time.

■Failure by the extended family: abuse, or relatives not believing children

■Failure of Social Workers: so many changes and missed appointments. Part-time staff with large case loads.

■Courts who have no understanding of what sending child in care to secure accommodation means.

■Schools that won’t let them in – ‘had one like you and it caused so much disruption’

■Friends – generally they don’t have many. Parents of peers are wary.

■Fellow children in care want to control them. If they don’t comply they are then bullied – possessions stolen etc. It’s about regaining control in an uncontrollable environment.

■Themselves: they’ve lost faith in their own abilities, except how to survive – so allow themselves to be exploited – sex, drugs, alcohol….and so on.

AND THEN REPEAT THE CYCLE. We MUST break the pattern – but who will do this? Not the targets of my evidence. This is the system…

■Government – not prioritising its resources for those most at risk; not supporting those that want to effect change and challenge the status quo; using its agencies (Ofsted, inspectorates) to create fearful institutions; and all the while definitely not doing what it preaches!

■Local Authorities – Child and Family Services – a multi-agency approach that is dysfunctional and buck passing – child deaths in Birmingham; CAMHS waiting lists; Education – refusing to encourage collaboration outside its own self-interest. Placement Panels…..hiding the gatekeepers.

■Communities: for tolerating complacency and not getting involved to enable change – for perpetuating bias and discrimination (targeting children’s homes for drugs in the local press)

■Agencies – who exploit the state of confusion in all of the above to suit their financial needs

■Charities – for putting their image before either its core clients or the people who work with them at the lowest paid levels. For presenting one face and delivering another

■Private providers who charge high fees and deliver low levels of service

Complex needs demand a complex solution and each of these points could be an area of research on its own. But to give an example, asked whether it was an appropriate use of government and national funding to support children in care achieve in school the answer was put in financial terms by the Minister for Children. All questions about costs for anything would be referred to as part of the national debate on the deficit – budgets being the principle behind all policy decisions. So, children in care are better not educated, especially after 16 – but kept in residential care units where costs can be kept down. It is symptomatic of a complete lack of understanding – even of simple financial expediency of children able to work paying taxes! This is short-termism – based on today’s budget NOT tomorrow’s costs. These are the dynamics – or lack of them – that come out of the evidence gathered around children in care. Simply put, decisions appear to be made and situations developed based on Assumptions and Opinions, Financial demands and Exclusivity. Not on research, need and the idea of doing the best for all. Generally the children in care themselves would prefer not to go to the types of school they find themselves in – mainly because they don’t see how those schools can help them. PRU’s, specials, units, PLS etc. They have been failed again and again. They don’t see the CARE they are supposed to get so why should they bother? The Problem is they can’t get into proper schools. Nearly all CiC are within the average band of intelligence and achievement and would be able to access the full national curriculum. However, many have missed school and are behind with reading, spelling and maths. Even if they are willing to catch up, schools won’t take them for fear of it affecting their results. Even those who are ahead of their peers in Literacy and Numeracy are not allowed in because of the fear, prejudice and discrimination against children in care. Schools, in my experience, go out of their way to find reasons NOT to take children. So these children get access to ASDAN and work experience at best – at worst – nothing. So it’s no wonder that private educational companies charge £1,500 a week for 1:1 programmes for young people unable to access any form of education. How can that be right in any sense – for either the child or the tax payer?

The System

There is the full range of quality of provision for CiC – from excellent to appalling. In the worst, children are locked up for eight hours a day with poor nutritional food – and the provision is different because no one provider, authority or government has a shared view of what constitutes a child in care and his or her need. Organisations are oppositional; Placement Panels are highly secretive and make fallible decisions. Commissioning officers then have to place children based on highest level of provision for the lowest cost – which is then not delivered by children’s homes. Children’s details are then circulated to a range of providers who make bids to deliver the resources able to be paid for. This will vary from residential care and may expand to include education, therapies, medical provision with varying levels of security and safeguarding needed. Costs vary from £1,500 a week to £7,000 a week. And if you can guarantee a minimum of 3 places from any one LA then bulk reductions in fees take place – but the provision is the same for all three children irrespective of their need.

In an interview with CEO of a major provider of care homes she made the following comments:

Local authorities want more for less;

children in most need are having provision withdrawn as money is reduced – and this affects holidays, education, therapy, training for staff and even food;

Education should be supporting children in care and social services, but they are opposing factions in a multi-agency joined up world that is fast becoming dysfunctional.

So, this is what I have seen over the past year. These are the difficulties children have faced in care. Some children not in care also face these difficulties – but not at the frequency or severity of CiC.

This is why the system is not working –

■Lack of principles

■Simplistic Solutions

■Wrong funding priorities

■Lack of engagement with children

■Lack of aspiration

■Lack of creative thinking

■Outdated measures and targets

So it is not a system then! The only part of the process that appears systematic is the inspection process that is beginning to flex its authority in the interests of children but is still pre-occupied with health and safety detail rather than addressing the issues here.

The system, in its complexity:

■Abdicates responsibility by passing the buck

■Blames the children for who they are

■Refuses them opportunities to develop

■Does not engage with local people and communities or allow CIC to take part in local activities

■Where staff even buy into the failures…“There’s no point in getting her up-she’s late for school already”

So, what would work and how can we replace the problems with solutions that may have a more positive impact on the outcomes for CIC. Research suggests CiC respond best to localised, dynamic groups of adults that focus on their needs.

Complex problems need complex solutions – which means individualised assessments and recommendations that can be delivered immediately and locally.

■We need to give care staff responsibility for the outcomes of CiC – how much they are involved in local community for example.

■We should fund the child not the place. With flexibility to move if necessary.

■And we should involve the children – and not just lip service.

If it’s working – keep children where they are. We have been putting this model into practice for the past three months and have already seen positive outcomes for children. Vulnerable children are by their nature the most vulnerable people in our society – but we continue to under resource and under prioritise their needs. Apart from the waste they have a right to a life. Positive change can be made when priorities are identified and addressed. Resources can be limited but positive management can influence outcomes for the better . This leads to hope, high expectations, self-esteem and value for money! It also increases educational and work prospects, decreases crime and addiction, improves individual and group safety and security. Children develop the ability to build relationships and improved social behaviours. These positive changes also lead to improved health and increased life expectancy all of which helps break the cycle of failure and despair.

What is stopping this happening?

I would suggest it is mainly the lack of will and the dishonesty of governments and agencies to face up to the fact that they have continually failed. By giving the appropriate weight and resources to this issue they would flag their own failures even more. As if that were possible. So, we must make a change – it could be any type of change but it cannot be the same system that has failed for so long. Because if we don’t, children will continue to be lost, uncared for and barely provided for. It is absurd that we are still having to fight for the rights of anyone in this day and age – but if we can’t do that for children we can’t do it for anyone. And if we can do it for children – we can do it for everyone. ”

Charlie Mead, June 2012

CPS For Children

 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).

Families whose children have special educational needs and seek the best provision for them at schools are often treated like second-class citizens by local authorities and tribunal appeal panels.

 Sheridan Humphreys, the mother of a 12-year-old son, Max, who has hemiplegia, a form of cerebral palsy and epilepsy, has experienced three traumatic SEN tribunal appeals which cost her her marriage and twice her career as a PR Consultant in the entertainment industry.

Sheridan is sharing her devastating experiences to promote an SEN conference, Towards a Positive Future, for families and professionals, which is being held on Saturday, 16 June at the Mary Hare School, Newbury.  Speakers include Jane Asher, President of the National Autistic Society.

Max is now settled in a specialist residential school in Surrey for boys with severe emotional and behavioural difficulties 50 miles away from her home in Godalming, Surrey.

 “It’s the right school for him and I am now concentrating on rebuilding my career, my emotional health and my family,” says Sheridan, who is a parent representative on Family Voice in Surrey which ensures the voice of parents is heard with regards to the design and delivery of services for children with disabilities and SEN in the county  and nationally as part of the National Network of Parent Carer Forums. She is also a parent representative on Surrey’s Local Change Board, which governs the progress of the  government’s pathfinder trials which are taking place there, part of the government’s reforms for SEN provision.

However, Sheridan admits she has paid a heavy price in seeking recognition of Max’s condition, which has been made much worse by the unhelpful approach of LEAs and the present intimidating tribunal appeal system.

“Not a week goes by without my being asked to prove to various statutory authorities that Max is a) disabled, or b) still has the ‘incurable’ conditions. By the time he was nine-years-old we had been through three SEN tribunal appeals,” says Sheridan.

 “The first appeal was when he was coming to the end of his nursery school. The nursery school led the process to apply for a Statement of SEN. This was declined, and so we appealed. And the day before it went to court, we were advised that our appeal was successful. I did this appeal myself, but it cost my marriage and my job.

 “The second appeal was more dramatic and came towards the end of year one. On starting primary school, he was only allowed to attend for half a day for most of his reception class, and by the time he was six, he had been excluded frequently. He had even had his hands tied up by an LSA who could not cope with him – which led to a child protection investigation. I found another mainstream school that I liked, and it had a place, but the head teacher of my chosen school denied there was a place at the school and did not want my son.

 “Fortunately, I won the other part of the tribunal – my son’s hours of one-to-one support increased from 20 to 32 hours, specifically so he could not be excluded for events taking place in lunch breaks!

 “I was most shocked at the tribunal when one of the panelists thanked a head teacher for coming, saying we realise your time is valuable etc. I had to take a day’s holiday to be there, the panel are paid to be there, even my pro bono barrister wanted to be there… yet was I thanked? No. I was treated as the agitator.

 “However, the exclusions continued until a new head teacher came along who did not believe in exclusions. I was relieved, but it turned out that my son was now spending most of his days sitting outside her office.

 “I came to the decision that if he was going to continue to go to school, then he needed to attend a special school, and I found one, in Surrey. Surrey LEA eventually started to look for a school for my son – after the new school year had started. The special school that I chose let my son attend, and while waiting for the LEA to name a school, I was asked to contribute what I could afford towards its £10,000 a year costs.

 “But, after three months, the school said they couldn’t meet my son’s needs without proper funding for his placement. Max was excluded after four months. Excluded from a special school! I thought my heart would break. I couldn’t believe that I was again facing another SEN appeal! We didn’t have to go to court. But it did cost me £1200 in legal fees. I suppose I was lucky. But once again, it cost me my job.

 “Most of my friends are parents of children with special educational needs. Most of them have children who are home educated and/or excluded from school. And they tell me that the SEN tribunal system is still the same.

 “This is what is the worst thing about it – no matter how much we could be learning from the system or from traumatic experiences like mine, nothing changes and nothing improves, and so much money is just wasted. Parents are treated like second-class citizens or trouble makers for wanting their child to have the best education to meet their special needs.

 “In my experience, we only ended up in the appeals system due to the errors and incompetence of two LEAs (in particular, their breaching the SEN code of practice). Yet only once have I heard of an SEN tribunal chairman telling an LEA that they have behaved inappropriately. It’s also hard, virtually impossible,  for parents to work out where to go or who to sue to reclaim any costs. I would like to see professionals and LEAs held accountable by SEN tribunals, either through financial penalties…or some other measure.  At the tribunals, there are no penalties for LEAs who break the law – so no incentives for them to change their pattern – and therefore parents are put through the same processes again and again.

 “Also, parents are the least respected ‘professional’ in the room at an actual SEN tribunal. I certainly felt that head teachers and LEA officials were regarded with greater respect than I was, while I was regarded as the trouble-maker who had brought the appeal.”

 Janet O’Keefe, a speech and language therapist who is organising the conference and is an expert witness for families at tribunal appeal hearings, said Sheridan’s experiences highlighted why urgent reforms were needed to make the appeal process more conciliatory and family friendly. While parents naturally seek the best education to meet their child’s special needs, this can lead to conflict as present laws state it only has to provide “adequate” provision. The government reforms says that each child should “reach their potential”, which I very much welcome.

“The present appeal system is very traumatic and expensive for families. Since all tribunals came under the Ministry of Justice, hearings have had to be held in government buildings instead of hotels or dedicated tribunal buildings to save money.  This means that instead of a formal business meeting, special education appeal hearings are now held in magistrates’ courts, asylum and immigration buildings, or social security offices.  Often there is security on the door like an airport to scan and search all bags and people entering the building. The whole process is increasingly stressful – and all because parents dared to disagree with the provision the local authorities are offering to support their child who through no fault of their own has special educational needs.”

 Please see www.wordswell.co.uk for further information about the conference.

Ends

Notes to editors:

1. For photos or interview requests, please contact media officer Ellee Seymour on 01353 648564, 07939 811961, or email ellee.seymour@btopenworld.com
2. Full details of the green paper for special educational needs, please see the Department for Education, http://www.education.gov.uk/childrenandyoungpeople/sen/a0075339/sengreenpaper

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.

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