By the time her son was 14 Jenny decided that he had become so damaged by the system which had repeatedly promised to help and subsequently failed him, that her only option was for him to attend a specialist asperger boarding school. This decision was made because her son had become so aggressive and unpleasant and she and her husband could no longer cope or protect her two younger children. He was regularly smashing the house and assaulting his siblings. At school he was not receiving an education that reflected his very high IQ and his natural curiosity had no means of expression. The LEA set up a package of education which they insisted was adequate and refused to consider a boarding school. Jenny and her husband asked for a tribunal and have spent well over a year preparing their case. This has entailed a phenomenal amount of time and emotional distress. The solicitor has given minimal guidance and failed to line up expert witnesses in time for the tribunal day. The child has been assessed and reassessed by legions of experts for both sides of the debate. One wonders why the LEA had not had the child properly assessed before deciding on his education package but manages to do so for a tribunal. The staff and experts for the LEA are all in cohoots and frequently talk to the child about the case. The parents have had to attend meetings, correct the notes taken at the meetings, correct false and misleading opinions about the family, write hundreds of letters etc. The effect on the entire family has been far reaching - time has been wasted, emotional energy expended on a daily basis, relationships tested and finally finances stretched - all to try and get her son an appropriate education that might heal the damage done to date and give him a chance of a future. The parents are so exhausted and can no longer cope with their son so if they do not win this tribunal their son may well be put into care and all this could have been avoided had his needs been identified and met earlier. The long term and pervasive cost to society of failing these children is enormous and the human cost to the entire family cannot be quantified.
Jenny sent me a link to the Department of Education Green Paper ‘Support and aspiration: A new approach to special educational needs and disability - A consultation’. She felt that we should collectively respond to the content through asteens. The document is 134 pages long so I groaned and procrastinated before speed reading the content. I approached the job having decided that it would be yet another example of a government coming up with hairbrained schemes without fully understanding the range and complexity of the problems and certainly without listening and responding to the real experts - Mums and Dads. It became evident to me very early on that someone had done their homework. The entire document showed a breadth of knowledge and understanding of the issues which astounded me and has clearly tried to integrate a lot of feedback from multiple sources into suggested solutions. I felt that most of the ideas put forward were creative but grounded by common sense.
I have selected a few of the principal ideas:-
They hope to:
- reduce bureaucracy
- Increase parental choice of schools,
- Identify problems earlier,
- Make the process of accessing help simpler,
- Enable children to reach their potential from birth to age 25 by possibly replacing the statementing system with a joined up education, health and social care package to provide families with support that reflects all of their needs.
- To share information and assessments thereby cutting down unnecessary duplication.
- The information could even be used to simplify access to appropriate benefits eg DLA,
- Give the personal budget to the parents to choose how to apportion the funds.
Parents are to be given more choice of schools but for those of us with children on the spectrum, there are very few Asperger schools. There are few which are capable of coping with those at the gifted end, so in reality will we be any better off?
I feel gratified that the problems many of us have faced throughout our children’s education have at last been acknowledged. I feel sad at the cost we and our children have had to pay in terms of their education and for the needless and constant suffering and stress at having to fight a system that has become deceitful, powerful and corrupt with excessively complex and bureaucractic practises. This has meant that only a few exceptionally determined, strong and educated parents stood any chance of getting the information, help and education their child needed to flourish, to be happy and to reach their full potential. Many of the rest had to settle for inappropriate and often sub-standard care. Many of us never worked out how to use the system and accepted it when we were told our child did not need a statement, our child could not flexi-school, our child did not require specialist help etc.
My feelings about the future are mixed - on the one hand the failings have been identified and noted so change is now at least possible. I am not confident about any government's ability to translate theory into practise and I am not confident that the necessary training and funding and the selection of only top quality staff, will materialise. Too much is at stake for the children now and in the future, their families and the cost to society at large, if we don’t sort this out. So, I very much hope that the work invested in the paper continues. How wonderful if the next generation of SEN children get the expertise, support and education they need within a flexible, personalised package with creative and innovative solutions.
Below are the notes which asteens made in response to the Green Paper.
Asteens Response to The Green Paper
www.asteens.co.uk
Asteens is a non profit making, on-line resource and support for parents of children on the autistic spectrum. It was set up by two mothers who researched and wrote a book about what it is really like to rear a child with Aspergers. During the research phase of the book over 200 parents shared their stories and the recurring and depressing theme, that the education system and other services were failing this group, was observed. As a result it was decided that further research was needed to identify whether this finding was representative or just an anomaly. We have now carried out the research and await the results but a provisional eyeball would suggest that the stories we were told when researching for the book do indeed accurately represent what is happening in the larger community.
We have read the Green paper and overall feel that it has has successfully picked up on the weaknesses inherent in the current system.
Parents are to be offered more choice in the school that their child attends. If they would like their child to experience an inclusive education this is to be provided if the school feels they can cope. However, there is no mention of what resources are to be made available to ensure that the school can adapt their environment, provide extra support etc - a flexible and creative approach is often needed. A child on the spectrum may not be able to attend mainstream because they cannot cope with the sensory issues - noise, smell, lighting etc - this could be overcome by having small study rooms (specially designed to control sensory issues) which has a video link to classes and lessons with a two-way communication. Alternatively a separate asperger unit could be provided which shares peripatetic teachers as well as having core base teaching staff. An article on satellite schooling can be viewed here.
At the moment most of those who chose a special school do not have any choice because there are very few specialist asperger schools and those that do exist are generally run by NCH on a boarding school basis. This means that it is either mainstream, a special school which is not adapted for a gifted child on the spectrum or trying, and usually failing, to get funds for boarding facilities.
At the moment all LEAs have a limited budget and once a child is statemented they then have a legal requirement to meet the assessed needs. This means that when funds are low, the LEAs do not want a child statemented or fully assessed because they haven’t the money to carry out their legal obligation . They appear to get round this by under or misdiagnosing. There is therefore a conflict of interest which needs addressing and they can select and build up relationships with assessors who may not be the best people to assess the child. In many cases we hear of, the ed. Psychs that the LEA employ appear to be operating at a sub-standard level compared to the private ed psychs. They may also employ a paediatrician to look at a child with undiagnosed Aspergers who will not pick up on the diagnosis. Many parents report to us that they are told that their severely affected child does not need a statement and because they are ignorant of what this means, they accept it. In reality this decision is made due to financial constraints and not because the child does not need a statement.
Information sharing has a surface rationale. However, information sharing is only of benefit if the information being shared is accurate, fair and true. Many parents report inaccuracies in their child’s case, over-opinionated experts stating something which is merely an opinion or belief but which can all too easily become viewed as a fact. When the information is inaccurate or based on opinions but is sold as fact because an expert said it eg. psychologist says the mother is depressed and not able to offer consistent and clear boundaries - this all to easily becomes a universal truth. Left unchallenged this can colour the services offered and may well be untrue. Quite often personality clashes, current beliefs and a professional’s particular leanings can colour their interpretation of the case.
There needs to be a very clear hand over at around aged 25 from childhood provision to adult services - a transition which should begin anytime between 18 and 25 depending on the individual case.
The current emphasis on 5 GCSEs as a measure of success is straight-jacketing schools. They are frequently so concerned about meeting this target and therefore push children to achieve this, when it is not in that child’s best interest. Many children with Aspergers cannot accept a rigid curriculum especially if there is inaccuracies in the content or if the content is deemed ridiculously easy or ambiguous. A very bright child on the spectrum may be better served by project work or OU or going straight into A-Levels and the schools should not be badly judged in these instances. For some children the fact that they are engaged in school at all may be a huge success so the success needs to be measured against a different set of starting criteria.
The proposition of enabling benefits (where appropriate) to be accessed through the assessment team is an enormous step forward and should, if at all possible be worked into the system. This would save untold stress and ensure that those in need will automatically receive the help. Many of us missed out on a lot of financial support because we did not know it was available, how to access it or how to fill the forms in.
Ed psychs need to be held accountable for the accuracy of their results. One case we know of had a one hour LEA assessment where the parent was told the child had an average IQ with no particular problems. Three independent private assessments found the child to be gifted (genius level) and that the child had many areas of severe problems suggestive of significant developmental difficulties. The LEA psychologist also hinted that the child was from a single parent household where discipline might be a problem. In reality the child was gifted and had extreme sensory problems which led to distress. Had the parent concerned accepted the LEA assessment (carried out in a strange place at a time when the child was extremely tired and hungry) his entire education package could have been wrong and all involved in his case would have interpreted misbehaviour as bad parenting.
Where a child has ADHD, behavioural problems etc we need to take a holistic approach to identify the many potential causes and cures and diet MUST be assessed. PLEASE ensure that someone reads this report and that diet is on everyone’s radar as a potential contributor to behavioural and emotional problems - The Links Between Diet and Behaviour - Report of an inquiry held by the Associate Parliamentary Food and Health Forum. Also work with Health Department on maternal diet and the potential effects on foetal brain development and the consequences for behavioural and developmental problems and the influence of gut flora on mental health.
Without awareness of this cutting edge research we will continue to ignore a potentially important tool (holistic approach) in managing and possibly preventing educational and behavioural problems.
Home educators who educate their own children because provision locally is not responsive enough to their child, should receive extra support. Each child to be offered 10 hours a week tuition in an area of their choice, access to a resource grant, exams booked and paid for and a local representative (could even be voluntary) to match and introduce families who would like to share some of the resources, activities etc. Where appropriate/desired local schools to offer free on-line access to lessons and work marked by local teacher. Assistance with application and transition to further education. More flexi-schooling to be offered and supported where it best meets the child’s needs without schools losing funding. We had a case where a parent was refused flexi-schooling because the local school said they would have to list the time the child was at home as an absence and it would adversely effect their truancy figures - schools need to be educated on how to flexi school.
Teacher training colleges need to review training regarding SENs with more specialist teachers available to mainstream schools.
Gifted children (IQ over 135) with special needs such as aspergers, anxiety, interaction problems need specialist units and flexible education plans. Truly gifted children, as opposed to bright children in the gifted and talented section of schools, need special education with a different and flexible syllabus.
Where children are funded in a boarding school, the education side is often funded by the LEA and the living side and social care is funded by Social Services. Once the child reaches 18, the education package is often still funded; however the Social Services responsibility ends. We know of a case where a very bright child is in the middle of his A-Levels, having for the first time in his life been able to benefit from his education, only to be told, with a week's warning, that the boarding costs would no longer be provided. This has meant that hundreds of thousands of pounds which have been invested into his boarding education is now wasted for the sake of one more years social funding because he cannot travel to the boarding school on a daily basis as it is too far away. If the funding of social care is stopped at 18 then many children who currently board will prematurely have to leave their boarding school before completing their education. This, in the long run, will cost society dear because this child is now in danger of leaving school with few qualifications and little chance of getting a job. Had he finished his A-Levels, he was expected to go on to take a degree in an academic subject.
In extreme cases the effect of the SEN child on the entire family needs to be considered when assessing the child’s educational needs. If a child’s behaviour is severely stressing the entire family then a boarding school may be preferable even if it is not what the child wants, if the other children in the family are being adversely effected or the parents can no longer cope then in the longer run it may be in the child’s best interest to be placed away from home. The child’s educational needs cannot necessarily be viewed in isolation. We had a case where parents were no longer coping and the other children were in danger from their son with Aspergers. He had become aggressive and impossible to live with. The parents felt that he needed a specialist boarding school but the local school insisted their package of educational measures was satisfactory. The educational psychologist noted that the child did not want to go to a boarding school. On the surface the LEA response seems reasonable as they are considering, as they should, the child's desires. However, because he was so violent at home, it had reached the point where if the LEA would not fund the boarding school, the parents felt they had no option other than to put their child into care. They felt that they could no longer protect their younger children, both parents had been put on anti-depressants and one had started to drink as a result of years of intense stress. The child would then be boarding in foster care and would lose the educational package the LEA had put into place because any foster care would be out of area. In the end, by considering the child in isolation of the family, his educational and social needs would not be met and he and the rest of the family would be damaged for life and cost other services a lot more than if education had been willing to fork out.
Anna van der Post
Mar 2011
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