Allison Hope-West is Head of Education at the Sheiling School, Ringwood, an independent residential special school in the UK, and former Director of Special Educational Needs Placements for the Cambian Group, which provides specialist residential education and care for young people with autistic spectrum disorders.

Here she answers a few questions about her new book for parents and professionals, Securing Appropriate Education Provision for Children with Autism Spectrum Disorders.

How did you become involved in special education, and how did the book come about?

After leaving the corporate world and retraining as a primary school teacher, my first teaching post was in a local authority special school for children with learning difficulties (11-16). I spent eight years in this role initially working with a range of children and within two years was asked to run a small unit catering for children with autism. At this point neither I nor any of the assistants working with me had any knowledge or training in this area. There was little literature available and we learned through trial and error. The unit grew rapidly as there was a huge lack of provision in the authority. It surprised me at the time that we were working with some of the most complex young people in the county and yet we were simply left to get on with it. There was no therapeutic support available and access to psychologists and psychiatrists was extremely patchy and hard to secure. Parents of the students in the unit received little support from social services and there was a global view that they had to fight for any support. My team and I developed a parent support group attached to the school and ran information sessions and training to support them. Many of the parents were completely worn down by the experience of supporting their children with such a lack of access to services and most did not understand the complex SEN system. The school was being asked frequently to support pupils with needs that required very specialist approaches although there was little additional funding made available for this. I decided that I really wanted to see what independent provision looked like and if there was a difference in outcomes considering the fees that were being charged. At this point I was also being asked to train other professionals and advise on setting up of units within special schools. This included a memorable training session for Educational Psychologists in their final year of study one of whom asked me if I could explain what autism actually was.

At this point I started to look at how mainstream provision was providing for their young people with autism. Some were providing an excellent service for their students, but for others lack of understanding, training and budget continued to be an issue which impacted on the quality of experience of young people.

I then took a job as a deputy head in an independent 52 week residential school for young people with autism and complex needs including challenging behaviour. The difference from the start was phenomenal. The training that I received during the first year was more that I had during my whole time in a local authority school. All staff received an extremely comprehensive training package which ran throughout the year. There was also a realistic budget given to accessing other training, for example, I was funded to study an M(ed) autism. The knowledge and understanding of autism of all staff in the school had a significant impact on the experiences and lives of the pupils. Bespoke packages of support developed and delivered by multi-disciplinary teams meant that the challenging behaviours that pupils displayed were reduced and replaced with more appropriate ways of getting their needs met. The curriculum had been modified to more appropriately meet the needs of pupils with autism, and the environment (school and residential areas) had been considered to make an autism friendly environment. Opportunities had been created to allow pupils to consolidate and practise new skills in real life settings. Every aspect of pupil’s developmental needs had been considered. This gave enhanced opportunities for learning and community access. The results in terms of outcomes were a testament to the success of the packages. I became acting head in this school and then moved to a permanent headship in a charitable residential school for students with autism.

My next role brought me into contact with many parents who were battling with local education authorities to secure placement for their child. It was only at this point that I started to understand about the complexities of the Statementing system and SENDIST. At this time I was reintroduced to an old school friend, Evelyn Ashford, and her son Jasper. I was really shocked at some of the things that Evelyn had to endure simply to try and understand the complexities of the system and to secure an appropriate education for her son.

I worked within the local authority for a period of time and this gave me the opportunity to see how tight budgets were, and the pressure that they were under to deliver educational packages which met the needs of children with SEN, specifically those with autism. The government agenda of inclusion, and reducing reliance on statements had led to some very uncomfortable choices being made, and the number of tribunals against local authorities continued to grow. Local authorities were starting to use expensive barristers to defend their decisions in an attempt to balance their books.

I then joined The Cambian Group and on a number of occasions attended tribunal on behalf of the schools and parents. I worked with a number of exceptionally good barristers and expert witnesses and this led to a huge increase in my knowledge and understanding of the SEN system. During this time I was introduced to many families who were desperate and needed intensive support and advice to try and understand the SEN system. Evelyn was in the process of trying to secure appropriate educational provision for her son, and this eventually led to us preparing for tribunal.

It became apparent that there was no easy way for parents to access information about what to do when the placement for their child was breaking down or not meeting their needs. It had also become evident from discussions with staff in schools that there was a lack of knowledge of the Education Act, The Code of Practice and the implications of both. It was at this point that I decide to write the book, to provide information and support in an easily digestible format to both parents and professionals.

Where are the biggest information ‘black holes’ for parents, and how can your book help?

Securing diagnosis in itself is not always straight forward. Many GPs are not particularly skilled at the identification of children with autism. This can also be a very difficult route if you have a child with autism who refuses to attend a surgery. Securing a diagnosis via the school EP can also present issues because of the lack of experience some have of the identification of autism. The book can guide you through this process.

I am often asked by parents to explain what good provision looks like. This is a difficult question to answer because of the individual profiles of young people with autism. If your child has a sensory processing disorder good practice may look very different to provision which can meet the needs of a child with very complex communication and language issues. The book attempts to guide parents through the process of asking the right questions to ascertain if certain provision is right for their child. It also outlines the most common educational programmes and describes them, as again the needs of individuals will define which may be useful.

There is a lot of information contained within the book on how to secure a Statement of SEN which effectively outlines the needs of a child and the provision required to meet the need. It gives legal timeframes for this process and offers advice on how to request this, as well as signposting to other help such as where you can find template letters.

Some of the biggest information ‘black holes’ is in understanding the process of securing funding for specialist provision, and also how to appeal decisions made by the Local Authority. The book outlines your legal rights and how to do this. Many parents do not have access to funds to employ a barrister to advise them and support them in tribunal. The book offers signposts as to where you can further access help and advice, as well as giving information on tribunals and how they work.

Why was it important to start the book with Evelyn and Jasper’s story?

The first chapter of the book was felt to be really significant by way of giving a real life account as to one family’s experience of the SEN system. I felt that it was important to give the information a context and also to reassure families that they are not alone in their experiences. Evelyn often spoke to me about how after her son received his diagnosis that she expected the ‘autism fairy’ to arrive at her house and explain the implications of Jasper having autism to her, as well as helping her secure educational provision which met his needs. Other families also spoke about how prior to diagnosis they were labelled as being bad parents and told that it was their fault that their child was not behaving in school. Almost all stated that they had been through the most emotionally (and often financially) draining time of their lives to try and secure appropriate provision, and that little or no help or advice had been forthcoming. Many stated that they felt that they had actively been misled by professionals (albeit unintentionally in some cases). I found this absolutely shocking. I was also stunned at the number of parents who had children with autism at home full-time because they had been excluded from school, and the often slow response to this from local authorities.

Evelyn’s journey mirrors that of many other families. It is complex and confusing to try and understand the process of securing educational provision for children with SEN. Issues around budget and government agendas play a significant part in decisions that are made by authorities. It has also been acknowledged that the whole SEN system is far too complicated for parents and should be revised, however it would appear unlikely that this is going to happen any time soon.

Copyright © Jessica Kingsley Publishers 2010

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