Memorandum submitted by Autism-in-Mind (AIM) Provision for SEN pupils in “mainstream” schools: availability of resources and expertise; different models of provision. Provision for SEN pupils in Special Schools. Raising standards of achievement for SEN pupils.
The system of statements of need for SEN pupils (“the statementing process”). The role of parents in decisions about their children’s education. How special educational needs are defined. Provision for different types and levels of SEN, including emotional, behavioural and social difficulties (EBSD). The legislative framework for SEN provision and the effects of the Disability Act 2001, which extended the Disability Discrimination Act to education. Autism-in-Mind can only address the issues being looked at by this Committee from the perspective of a National Group who supports parents and carers who have children with Autistic Spectrum Disorders.
Provision for SEN pupils in “mainstream” schools: availability of resources and expertise; differentmodels of provision. The provision for pupils with an ASD in “mainstream” is very much a postcode lottery. The service provision and resources differ greatly depending on where you live. “What autism provision? There are continuing difficulties in mainstream provision, but that’s not autism provision!”
This is what many of our parents have told us. The biggest problem continues to be lack of awareness of ASD and how it affects the child because there is still nowhere near enough ASD specific training delivered by professionals who do have the awareness and understanding of this very complex disorder. Parents are still not being believed that their children have an ASD. Far too many schools “Nationwide” see the child’s problem as being something that the parent has perpetrated and in some way contributed to. All Mainstream Schools need accredited and continuous training to address this problem and in our opinion it must be made mandatory. The Government must also make sure that all training teachers have ASD modules included in their training. This was recommended in the National Autism Plan for Children (NAP) but is still a very long way from being a reality. The reality is that the NAP provides a comprehensive map for the way forward for children with ASD. There is no need to reinvent the wheel it has already been invented. Devolved Funding into schools is not providing the support for children with ASD. There are LEA’s who are operating policies, many of which IPSEA consider to be illegal, where a Statement will not be issued to a child with Aspergers syndrome. It appears that a child not only has to be failing, but has to be at least 4 to 5 years behind it’s peer group before a Statement will be issued! Rita Jordan has been saying for years that support structures must be in place for a child with ASD before it fails. We have very serious concerns about children who have a diagnosis of Aspergers Syndrome. Most Authorities see these children as only ever being placed into a mainstream setting with no hope of their parents ever being able to obtain a statement. LEA’s lie to parents who are vulnerable and expect to be told the truth by professional bodies of people. They are told that there children do not fulfill he criteria need to be issued with a Statement. They are told that School Action Plus will meet the needs of their children. How can the needs of any child be met when there has not been an assessment of needs? It simply does not make sense.
Provision for SEN Pupils in Special Schools.
Sadly many of our children have suffered dreadfully when placed within a Special
School. This is because children with ASD require “specialist provision” rather than Special Schools. Autism is a unique disability which we believe does not pigeon hole with any other disability for educational purposes. We therefore feel that some Special Schools are as inappropriate for our children as Mainstream Schools. Raising Standards of Achievement for SEN Pupils
Start by accepting that our children are different and therefore require specialist teaching. As well as the core subjects our children require specialist teaching to assist their communication and their socialisation skills. Being taken out of school one day each week for 12 weeks, as often happens is not the answer. Many of the Social Skills groups and Emotional Literacy Groups that our children are sent to were never designed for children with an ASD. Once again they are being made to “fit in” to an inappropriate setting. Effective Communication and Socialisation skills should be core subjects for our children and very much on going. If the barriers of communication and socialisation were being worked at then the standards would rise. Make sure that the needs of these children are met within the classroom. Many of our children are now being taught in a corridor. Is this really inclusion? There is still far too much emphasis being placed on our children having to “fit in”. The educational provision should ALWAYS wrap around the child and not the child wrap around the provision. How can a child who is being expected to maintain coping strategies for 13 years ever going to achieve anything? The Literacy and Numeracy Hour is a disaster for our children. It highlights their difference and inadequacies and leaves them feeling frustrated and useless. Is this really how we want disabled children to feel? If the teachers teaching our children had been given the correct training then they would have a greater understanding of them. This in itself would help raise standards in achievement. Far too many of our children are actually being taught by Non Teaching Assistants and Learning Support Assistants, simply because it is the easiest option for the school. What about the child? Because many children with Aspergers Syndrome are unable to obtain a Statement they are failing in mainstream classrooms. Their needs are not being assessed because we now have a generalised attitude that children with AS and High Functioning Autism (HFA) do not need support. Please go back and revise this way of thinking. More and more children with AS and HFA are being referred to Child and Adolescence Mental Health for their input for very serious mental health issues which are being seen as a direct result of mismanagement of the child in school.Children with AS and HFA are seriously socially disabled. When you do not even understand yourself how on earth are you supposed to make sense and make friends with the child sitting next to you? Who is teaching our children about themselves? Children with ASD cannot multi-task placing them in a classroom with 30 other children will not teach them effective communication and social skills. It merely highlights their differences it also makes our children easy prey for bullies. The System of Statements of Need for SEN Pupils (“The Statementing Process”)
One of the biggest challenges for parents is obtaining a statement of SEN and then “policing” their LEA to ensure provision happens. Parents are often placed under pressure by the LEAs and other Authorities not to pursue a Statement for their child. LEA’s make their criteria for obtaining a Statement very difficult to achieve. With the LEAs, cost always comes before need. School Action/School Action Plus is cheaper and not legally-binding. How can one meet the needs of a child with complex and specific needs without a full and formal assessment of that child’s needs?
Solution: Meet the Needs of the Individual Child and not the System Many of our parents have fought for years to obtain a Statement for their child and are still fighting. You can only enforce the legal responsibilities of any LEA once the child actually has a written Statement. Far too many parents never actually reach this point. Form a governing, national body (similar IPSEA). Ensure that every LEA has an independent body that can monitor and “police” the LEA when they are not complying with their duties under the current legislation.
Ensure that this independent body has legal powers to ensure the LEA carries out these duties. Simplify the process. (Most parents don’t understand the legal implications and procedures). Speed up the process. Parents would trust an independent body more than an agenda-run LEA. In addition to that, we believe that if an independent body were policing LEAs there would be fewer parents appealing to SENDIST. Many parents go to SENDIST to ensure that the LEA complies with its legal duties (writing a statement as it should, carrying out an assessment, making a statement etc.) This was never the reason for SENDIST being set up. LEAs are very aware that appealing to SENDIST is a lengthy and stressful process and many parents do not appeal for this reason. We have had parents who have appealed to SENDIST, obtained provision in their child’s statement and yet the LEA do not arrange the provision. The parent has then to go through the process of complaining to the Ombudsman. Bare in mind, this is the action of an informed parent. Not all parents are as informed. It is difficult enough raising a disabled child without the added stress of having to “police” the LEA and fight for their child’s legal right to obtain the provision to which they are entitled.
The Role of Parents in Decisions about their Children’s Education “Try Listening to them!” That is the one thing that parents would like most. If we are ever to right the terrible wrongs that are being visited onto our children by the current system of education, then parents must be given the respect and the hearing that they deserve. “WE” are the experts—we know where it has gone wrong and why—we know how to sort out this mess. We would actually give you the information free of charge. Payment would be never having to see our children self-harm or retreat into their protective ASD shell again. Most Authorities have parent support groups up and running—why not use the knowledge held by these parents? Parents need to believe that they are being listened to, and that their knowledge and understanding of their child and is respected. Their input should be welcomed and valued and they should not be made to feel like intruders when asking questions about their child within a school setting.Get parents on board at grass root level. Although there are Strategic Partnership Groups and their counterparts up and running all over the UK there are few who actually pay more than lip service to any parents involved in their groups. There is a place for parents within these groups and they need to be on an equal partnership footing? All over the
UK we are gearing up for unified service provision with the appointments of Directors for Children’s Services. This is a brilliant opportunity to involve parents. BUT instead we find groups working on “integrated care pathways”—which would certainly benefit from the input of parents—alone. Parents are still viewed as people who interfere with the professional’s view of the ASD Big Picture. Could parents be included into the Big Picture? ASD Educational outreach teams need the parents of ASD children to be a useful resource for the team. Consult parents and ask for their opinions. If there are parent groups up and running in an Authority the Authority could and should be using these groups as a sounding board.If parents feel that they are being listened to and that their views and opinions are being taken seriously and valued—then they will remain on board any partnership groups. Not every Authority has access to Tony Attwood, Simon Barron Cohen or Rita Jordan—but they will all have access to parents, many of whom can provide them with a comprehensive broad base of information and knowledge. Many parents know a great deal about their subject as they ALL live with it. How Special Educational Needs are defined. Sadly a physical disability or an IQ usually defines them. This method of defining SEN is leaving thousands of our children and young people unsupported in schools. Autism-in-Mind seek to see Autistic Spectrum Disorder removed from within the umbrella of SEN simply because the needs of our children are so complex and specific. It is not our intention to neither compete with other SEN’s nor yet minimise the impact that other SEN’s have on children. But we believe that unless the uniqueness of this condition is recognised and accepted our children will be left failing into the next millennium. A high IQ is of little relevance when a child is so chronically socially disabled by a condition that it finds just sitting next to another child impossible. Sitting next to another child can actually disable a child learning abilities. This needs to be recognised and accepted. A high IQ does NOT reduce the level of autism and is entirely separate form the ASD. There are things that EVERY child with a diagnosis of ASD needs to be taught that would enable them to live as independent a life as possible, thus saving the State millions of pounds each year. At the moment these things are not even recognised as being part of the disability, simply because the child has a high IQ. What is the point of being able to crack the theory of relativity if you do not have the skills to purchase abottle of milk from a shop? Many of our children learn things, which they do not understand. This may sound rather stupid but it is a fact. We have children who can sit and read a book from cover to cover in Hebrew but have not understood a word of what they have read. So is there any point in acquiring a skill that you are not able to use effectively? We acknowledge that for many children with an ASD they have no shared meanings and understandings of things that the rest of us take for granted. This in itself is seriously disabling for our children and yet it is continually dismissed.We therefore need to see a huge turnaround in the way an SEN is defined. Autism-in-Mind would welcome the opportunity to discuss this very important issue with the Committee in more detail.
Provision for Different Types and Levels of SEN, Including Emotional, Behavioural and Social Difficulties (EBSD).
This question is not relevant to children with Autism, although sadly they are often included with children who have including emotional, behavioural and social difficulties. Again we feel that this is because professionals fail to understand that although these problems may occur with an ASD they are present because the child is being taught in an inappropriate setting. The Legislative Framework for SEN Provision and the Effects of the Disability Act 2001, which Extended the Disability Discrimination Act to Education Although LEA’s should all have a clear understanding of what is required of them by law they all continue to flout their responsibilities and drag their heels on timescales, which are clearly defined in the 1996 Education Act and 2001 regulations.This leaves parents with no choice but to “police” their individual LEA’s, which is a quite shocking state of affairs. The very people who are supposed to be providing for their children’s needs are punishing parents who have children with SEN. Although many parents do in fact “police” their LEA’s there are many who, because of the disability of their child and the restrictions this places upon them as a family, are unable to do so. Another serious issue is Statements that are issued without being specified and quantified. Unless a parent is very well versed they will again believe that a Statement is the answer to any problems that their child is facing in school. Sadly some Statements are so vague that it has been of little point obtaining one in the first place. We believe that there is widespread abuse of the current legislative position and it must either be stopped at once or changed so that there is no room for abuse.
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