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).

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

Tania Tirraoro is a mother of two sons who have Asperger Syndrome, a wife, author, journalist and the founder of the special needs jungle website. The special needs jungle is a solid resource for suggestions, advice and tips for parents with children with special needs.   She has personal experience and writes about life, the care of her sons with special needs and much more.

Tania is one of the four keynote speakers at this year’s Towards a Positive Future Conference having attended as a delegate last year.

“The event was held at the Mary Hare School for hearing impaired children near Newbury. The school does inspirational work in providing an education for its pupils, helping each through individually designed hearing equipment. As a non-maintained state school, the school’s head, Tony Shaw, said they are ‘not considered to be part of inclusion’ and have had their funding cut by central government. This, despite the Education Secretary, Michael Gove, himself having a sister with a hearing impairment.”

Her talk will provide feedback for one of the pathfinder sites for the UK Government Green Paper on Special Education Needs:’ Support and Aspiration, A new approach to special education needs and disabilities’.

The Green Paper states that every child needs the right resources early in life to reach their full potential. The need for resources is in great demand with the growing identification of over 2 million children and young people who are in need of support for their needs.

IPSEA were among many charities, support groups and individuals who responded to the 2011 Government Consultation on the ideas published in the green paper. IPSEA, who represent parents who have had difficulties with their school or Local Authority, replied: “In many cases, by contacting us and using the existing legal framework, these parents have achieved a satisfactory outcome for their children.  Where we oppose any of the proposals in the Green Paper, we are aiming to ensure similar outcomes in the future – and to protect the existing rights parents have.”

“We question whether currently parents see Local Authorities as having a role as champions for vulnerable children and families. In order for that to be achieved there needs to be a re-building of trust and confidence. It is essential that Local Authorities apply the SEN legal framework in a consistent manner in order that no postcode lottery exists between geographical areas in the delivery of provision.”

Tania has been informed that there will be NO White Paper published.  Instead the UK Government will soon issue a new document called “The Way Forward”.  This will set out that:

• There will be a new SEN Code of Practice by the academic year 2013/4.
• The Education Health and Care Plan will replace the Statement of SEN by 2014.
• There are no plans to remove parents’ right to appeal.
• The EHCP will still have statutory protection.
• Occupational Therapy and Speech and Language Therapy will continue to be funded by education if an educational need.
• Money allocated per child will be up to £10,000 per child based on a needs-based formula and schools can commission services directly from this budget.
• Personalised budgets will come in in September 2013 controlled by parents.
• Screening at 2 to 2.5 years is to be reintroduced with the training of an additional 10,000 Health visitors.

Tania Tirraoro considers that  Local Authorities are still seeing parents as ‘separate’ and on an ‘opposing side’.  Book now to hear Tania and other speakers at the Towards a Positive Future 2012 conference.