Children with special needs
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Lord Adonis - speaking now - is evasive and disingenous. Clearly unable to make tough choices and think in real reformist terms. His comments about the 'free' nature of SEN tribunals beggars belief. These are quasi-legal proceedings and LEAs will come equipped with solicitors and legal advice. As you suggest only the wealthy, articulate and middle class can make the system work for them and then only with difficulty and often less than satisfactory results
My son is autistic and I would like to say, what every parent in my psoition knows, which is the number of places which LEAs have for chgildren with these difficulties is stunningly low. In my district there are 8 places for a number of applicants which I have been told exceeds 400.
With Lord Adonis so out of touch what hope do we parents with struggling children have?
I am the mother of a severely dyslexic 11 year old. I have been a school governor and have endeavoured to work very closely with the school my son attends in the hope that I would understand "the system" and be able to get the help he so badly needs. The bottom line is that the LEA are obstructive and do nothing to help parents who know their children have difficulties.
In the end we paid 拢250 for a private assessment with an educational psychologist and she confirmed what we already knew. Now we pay 拢60 per week for our son to have one to one tuition with a private tutor - we are on working family tax credits so this 拢60 is quite a chunk out of our weekly income - what choice do we have!
Wake up lord adonis!
Some emails sent to us:
"As a parent of a severely disabled child Lord Adonis spoke utter nonsense. The Tribunal is a fact finding lower court and parents must present a legal case, to win their appeal, which costs money. Parents of disabled children do not appeal to Tribunal becuase they cannot afford it. Finally perhaps Lord Adonis can explain why his ' ex boss' chose to ignore the system and place her child in a private special school, rather than face the battles we do.
Les Coombs"
"We have been dealing with HCC LEA with regards to our complaint against them. The lady who just spoke on your programme summed them up exactly. They are no help, they hope you will go away, they make mistakes but will not admit them. In total, they are a disaster. We have educated our children at home. The LEA have NO idea of how HE works.
They are USELESS!
Yours,
Bryan Lawrence."
"I too found the process of obtaining a Statement of Special needs horrendous.. While we lived in Buckinghamshire it took nearly 3 years of struggle to get a statement for our Autistic son, indeed we never succeeded while it was important for my son's education in Buckinghamshire, however when we sold our house to move to Shropshire, a few days after exchanging contracts on the sale of our home, and when the county council was sure we were moving out of county, the Statement arrived.. they knew they would not have to pick up the bill and that Shropshire CC would!. I always maintained that the process was / is a form of child abuse.
Raef Baldwin"
I work in a Children and Families Mental Health service and it is frustrating that so many children get referred here NOT because of mental health problems but because they are not getting their special needs recognised and met in school. Due to this they often don't perform well, misbehave ore refuse to go to school..... hence a referral to Mental Health!!
I then assess the children and realise that the LEA have no intntion of meeting the childs needs by giving Statements of Special Educational Needs because of financial limitations or, using their explanation "Even if we gave the child a statment, he wouldn't get any more support than he is getting now".
Not good enough and wasting Mental Health time and money.
Srry Adonis incorrect the experience is typical.
My sister has a 12 year old son with Aspergers and is on medication.
He currently receives no schooling as he cannot cope with mainstream + mainstream schools want to exclude him.
We new 5 years ago that he had problems but LEA did everything possible to prevent an Aspergers diagnosis.
Lord Adonis says that only 1 in 400 children go to SEN Tribunal. Clearly he has never tried. It would be interesting to find the number that are discouraged by the number of "hoops" they have to jump through, the number that do not have English as a first language, and the number that are "bought off" with the offer of minimal increases in support. Lord Adonis says that the Tribunal is free. The LEA's have all of "their" employees to call on to give evidence and it is an expensive business financially and emotionally to go against the very people who will subsequently be responsible for delivering any services that the Tribunal might insist are delivered. This is not an even playing field. I speak as aparent and an SEN Governor in a primary school.
More emails:
"Lord Adonis - speaking now - is evasive and disingenous. Clearly unable to make tough choices and think in real reformist terms. His comments about the 'free' nature of SEN tribunals beggars belief. These are quasi-legal proceedings and LEAs will come equipped with solicitors and legal advice. As you suggest only the wealthy, articulate and middle class can make the system work for them and then only with difficulty and often less than satisfactory results
Sean Hanley"
From A Kingston: "I worked at a state primary school helping children who were falling behind. I soon realised that one little girl was severeley dyslexic - as indeed was her older sister - but although it was perfectly obvious what the problem was that was holding her back, she had not been statemented and when I enquired (off the record) why this had not been done I was told that once she had been officially statemented she would have to be assigned a special needs teacher and the budget was already overstretched. Don't let anyone tell you that your examples were rare cases. This girl came from a family who would never have taken action themselves and so she was condemned to not having the help she needed."
and this:
"hello there is an organisation IPSEA- Independent panel for special educational advice, which provides free advice and support for parents going through the system. from assessment through to statementing and if needed tribunal. As an organisation it has been very successful at representing lower income families. Please speak to them whenever you have this issue come up again as it has a wealth of experience. Thank you John King of Hampshire."
I have dyslexia, so I consider my special educational needs as significant, but my condition quite mild. I recieved no educational support during my primary and high school education, yet, when I went to university, my Local Education Authority fell over itself to help me. I was given a computer and software worth 拢2000 to assist me with spelling and grammer.
I wonder just how far an Lea is prepaired to go to invest in children with special needs. Perhaps they saw me as worthy of help, once I'd finally struggled into higher education with the promise that I might earn enough to pay the Government back.
Louise Fearn,
Staffordshire.
The education system is definatley letting the children of the future down. My child has language problems and the health and education systems do not work together to provide effective help. Pressure is being put on teachers to teach children who need specialist help and understanding. All too often these children are written off as being naughty or bad when all they need is specialist help. A class of 30 is too much for a child with language difficulties and the fact that teachers have become obsessed with statistics and achieving government set goals adds more pressure on the child and teacher. Often children with special needs are left lacking in self confidence and low self esteem because the education system is not geared to those who need specialist help. Speech & language support is not provided within the school which makes children feel different. The teachers at school are unable to support the therapy within the class room because the expertise and experience is not shared. If I had the money I would pay for private education for my special needs child because the state system is letting us down.
Lord Adonis, I think it was, said that only 1 in 400 cases go through to Tribunal. I believe this is because it is made so difficult for parents to get to Tribunal in the first place. We fought our LEA for an appropriate education for our blind daughter over the course of two years - it cost us just over 拢20,000, and it was probably only because my husband and I both have a secure educational background that we eventually succeeded.
I really feel for those who don't have the confidence or social/educational background to stand up the LEAs. Many of them are not necessarily aware of the options that are - theoretically - open to them.
My vote certainly goes to separating the assessment and the funding.
Adonis's comments were a disgrace. He avoided all the valid points made by the parents interviewed. THey highlighted the huge difficulties parents find in getting assessment , let alone provision, for special educational needs. He ducked out of the point that better-off parents can finds ways round the problem to some extent: paying for private assessments, legal representation at tribunals, and independent provision. Ruth Kelly, former education minister, did this for her son with dyslexia. PM programme should insist on interviewing her.
I heard the Lords statement that the LEA is a democratic body. Can He tell me who elects them? If not I will take the rest of what he said with a piece of salt
As an LSA who works with KS2 children with SEN it is my experience that there are many children in school who need additional support but the case is that unless the child has severe behavioural problems which interfere with the education and safety of other children then they are very unlikely to get any audit funding. The funding criteria for other than behavioural problems are so strict that a child has to be severly impaired to even apply for funding and even then funding is a lottery dictated by the LEA's SEN budget.
It is so true that early intervention and help for children with cognitive problems like dyslexia or dyscalculia or who are just too immature to keep up with the curriculum, results in many problems later on. These children become disaffected, switched off and disruptive individuals who see no point in school and will end up unemployable or worse in prison - how much does that cost the country in the long term compared with a few hours a week extra help for these children from an LSA?
Short term budget decisions today cause long term costs to society tomorrow.
Srry Adonis incorrect the experience is typical.
My sister has a 12 year old son with Aspergers and is on medication.
He currently receives no schooling as he cannot cope with mainstream + mainstream schools want to exclude him.
We new 5 years ago that he had problems but LEA did everything possible to prevent an Aspergers diagnosis.
The governments policy of inclusion has effectively been excluding children from education for the past few years. children who need to be in special schools do far better in those schools than they can ever do in mainstream. They are not bullied about their conditions, they can work in small class sizes, with teachers who can plan lessons according to the range of needs in teh class. In mainstream their needs are lost in a class of 30 despite teh best efforts of the classroom teacher to tailor teaching to the huge range of levels. Children with special needs who attended my mainstream school were excluded for behaviour, truanted, were bullied and effectively learned nothing. Children who attened a local special school where my parent was a teacher came away as well rounded individual, with many useful life skills, and most go on to play a useful role in society.
Lord Adonis's responses were at best devious. As a Governor of a Special Needs School it is clear to me that many LEAs subject parents of disabled children to a horrific experience. Whatever facts and figures Loed Adonis used were tailored to what he wished to justify and it is quite clear that he has not listened to nor discussed the difficulties with such parents. His comments will have enraged many and I would strongly urge and others would beg the PM team to continue further this debate.
Unless much has changed in the last few years, I'd guess it's still a struggle for parents of children with SEN to get their needs assessed, let alone to move towards having those needs formally statemented, and then there's the small issue of provision .......
I think I may have mentioned this before on the Blog, but before I moved out from teaching a few years ago, I found myself teaching a class of over 30 pupils, at least half of which were statemented, and a large proportion of the other half having behavioural problems. None of these children had the support to which, theoretically, they were individually entitled during my classes. On the other hand, the school where I taught before that was extremely good in the way it organised SEN support. Two schools, same educational authority, two entirely different approaches.
I'm a parent who is a veteran of two SEN tribunals. It's not pleasant, it's not easy. Problems with SEN tribunals and mainstream school education for my son destroyed my career. I was supported through the tribunal process by solicitors through legal aid and by a pro bono barrister provided through IPSEA. It's not easy, and absolutely not possible to do it by yourself, in spite of what the video provided by the tribunal says.
I was most shocked at the tribunal when one of the panellists thanked a headteacher 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, my barrister wanted to be there... yet was I thanked? No. I was treated as the agitator.
It's well known to parents in my area that if you send enough documents to the LEA with your appeal, they'll just go 'too hard' and settle with you the day before your tribunal hearing - and anyone whose statement goes to panel in the second half of the financial year? Forget about it. There's no money left so you won't get a statement.
My son has cerebral palsy and epilepsy and goes to mainstream school. He was excluded 3 times by the age of 6. The LEA did nothing about this, and the NHS psychologist refused to interfere with internal school matters. But then the headteacher changed, and my son is now treated as he should be - as a child with special educational needs. Our new head as a no-exclusions policy... Now only poorly behaved teachers are shown the door. Headteachers who exclude disabled children should be called to account.
My 13 year old grandson was diagnosed with Asbergers syndrome luckily before he was 4 years old. However, his mother had to take his case before the education authorities and honestly make a great fuss before they would acknowledge his needs and a place at school. He was probably one of the lucky ones but now at 13 years the provision has fallen apart. He is bullied at school, becomes depressed, is quite aware he is different and wonders what hope there will be for him in the future. There is little provision for him at school and no alternative facilities which can cater for his intensity and obsessive behaviour. He is a lovely boy and could have great potential. I feel so sad for him.
I bet that I am just one of hundreds and hundreds of others who have just been jumping up and down and screaming at the radio in absolute disbelief at what I was just hearing from that ridiculous man! Does he genuinley have such a conveniently illconceived idea of the sheer amount of time, money and stress that parents go through trying to get the appropriate education for their children taking on the mite of the LEA who are determined not to part with a penny to support children with the most complex needs? That parents are going to tribunal not only once, but twice and three times to get an assessment and provision that should be an entitlement. My sisters current bill stands at 拢12,000 for private assessments, witnesses and solicitors bills and its not over yet! Plus her son has no school to go to in September when other children are looking forward to moving on, because the school with the specialist provision is not acessable without a statemnt and the LEA refuse to issue one. So far the process has taken 22 months! The situation must change it is completely ridiculous and must be against everything that is fair and reasonable.
to understand the statement/or lack of statement/ scandal you need to understand how LEAs work.
Over a period of fifteen years or more they have systematically eroded the criteria for allowing access to a formal assessment by an educational psychologist, and therefore possible access to a statement
Fifteen years ago, a statement would be likely to be given to a child whose literacy ability was at the 7th centile or below, now they have to be at the 1st centile.
My experiance is awful. My daughter is deaf and visually impaired but very bright. She has failed to be included into mainstream education. She has not been educated for 2 years. No body knows what to do with her and they take on notice of us. The SEN Code of Practice should be binned. Statements of Special educational Needs need to be written by independent people who are not driven by budgets. School Governorns need to wake up to the needs of children with special educational needs. Ofsted inspectors should look in detail at SEN in schools and talk to all parents of children with statements. The whole system needs a big shake up or we will continue to fail our most vulnerable children.
My son has very recently been diagnosed as having ADHD and is still waiting for an assessment for ASD (Autism Spectrum Disorders). He is eight, and has been having problems at school since day one (around four years).
Until my son's diagnosis all linked professionals concerned with his case have directed blame towards him, and us as parents. Any support provided was directed at the school rather than my son or us. Very little support was directed towards his education, as his behavioural problems were of top priority.
We had no real help, no support and felt lost. It is only with this diagnosis and the help of our local ADHD Foundation that we now feel empowered to push for our son's rights, and to question professionals involved.
We are still facing a culture of 'ADHD is another label for naughty', and we have been told that he won't be statemented, nor will extra provision be made, as this is 'not done any more'. So how is he meant to access education fully and with the support he needs?
The system is in dire need of a TRULY independant professional body to assess children with special needs. Not one that is thinking of financial issues, or one that is out to protect the school's best interests.
Too many parents are scared to question so called professionals, and too scared to fight for their child's true rights as an individual.
We felt like that, and feel really sorry for anyone who is in the position we were until recently. We still have a long way to go, but we now at least have some access to help. Help that is truly independant - no thanks to the LEA, the school or other professionals involved.
There is a recognised problem with the small amount of training that educationalists have received in special needs. They very often rely on there being a medical diagnosis - which can be years in coming, for various reasons - and in its absence many schools will deny there is a need. If parents insist, they tend to be labelled as nuisance parents or even worse, as fabricating their childrens conditions - this holds with it the danger of getting into the secretive and somewhat biased child protection system. Using legal remedies via the Tribunal is only open to those seeking an Educational Statement which is the top level of SEN recognition. There are two other lower levels that ideally ensure that a child is given appropriate help - but they won't within the cycle of fighting for recognition and meanwhile the increasing difficulties of child within an education system that is not working well for them and is very likely blaming them and their parents for the effects.
As a professional specialist AS counsellor researching an MA in Autism and the mother of a teenager with Asperger Syndrome, I take massive issue with Lord Adonis' assertion that most parents are 'satisfied' with the services they receive from LEA's regarding the special educational needs of their disabled children.
For the past five years I have been working with many, many parents of AS children and I have yet to find ONE parent who was satisfied with the services or found them easy to access. On the contrary, most fight through a minefield of red tape only to find a lack of provision at the end of it.
This leaves them feeling despairing and, in some cases known to me, suicidal.
Lord Adonis is WAY out of touch with reality here. Perhaps he should actually try talking to some of these parents. He would soon find that his assertion this afternoon is frankly risible.
Lord Adonis said there was no difference between the LA undertaking the statement and a Quango doing so. That is as maybe but I am certain there would be a difference in practice. After all the LA has the authority in principle but in practice fails many children.
CHRIS
I am an independant speech and language therapist who has been driven out of the NHS system because of the inequities, disorganisation and ineffectiveness of the LEA SEN system. I now work independantly for two mainstream schools in South East London, both of whom employ me because there is little or no SLT service to the children with communication difficulties. In my experience it is next to impossible to get a statement for a child, even those working at three, four or even five years below their chonological age.
In addition, I provide INDEPENDANT advice, i.e. I am not told what to write in the recommendation section of my reports, which happended while I was working in an LEA funded post. I attend several tribunals per year and am outraged by the idea that they are free for parents. Independant reports, which are necessary to prove that the LEA's frequently biased reports are inacurate or imprecise cost a great deal and if you want one of the experts to attend the tribunal, that incurs a further fee. This is without employing a solicitor to oversee what is an exptremely lengthy and stressful procedure.
It is high time that there was an effective overhaul of an outdated and inefficient system.
I taught childre withspecial needs for 20 years and felt that many of them were getting a rough deal. Because of the necessity for an asssessment by an Educational Psychologist, there was lengthy waiting period and in some cases children wait years because the number of children that the Special Needs Coordinator can refer is restricted. Statements are written to fit the provision that the authority has in place which is not necessarily the best place for the child.
Childen with dyslexia are expected to be catered for in the mainstream class with a curriculum that does not allow for children to learn through a multi-sensory approach or individual needs to be considered, and we all know what Ruth Kelly did about that!
Having previously met Lord Adonis and questioned him as to his view concerning the current crisis in special needs education in the UK and his subsequent assertion that everything was fine, I believe that he his hopelessy out of touch with how the system operates at the sharp end. He seems to only articulate views put forward by DfES civil servants rather than get out there, get his hands dirty and face up to the failings of the system. Of course only the few end up at tribunal. It is an expensive, time consuming, litigious process that only a few will or can attempt to undertake. It took our family 2 years and circa 拢20k (our total savings) to get our son an appropriate education. Rather than be condemned to fail in an inappropriate setting, he now thrives in a special school. He is fortunate in coming from a family with the income to take on the fight and for being supported by the very special people who have come forward to support and assist us in securing James his right to an appropriate education.
Important people in assessing and helping support children with special needs are educational psychologists. Most people in education already know that educational psychologist are in short supply. I am currently training to become an educational psychologist and due to funding issues, I may not be able to continue my course. Unfortunately, I am not alone as only about 33% of trainees have the required job to continue on the course next year. If the funding issues continue this could have a severe impact on quality of education for children with special needs. I am disappointed that we run the risk of failing a great number of vulnerable children.
I am deeply concerned with the statement by Lord Adonis because, I along with many other parents in this county have experienced signifcant obstruction and deliberate avoidance by the LEA of their duty of care and their duty to assess. Lord Adonis seems to believe that local authority officers understand the law and actually comply with it. The way the county officers avoid meeting their duty to assess or giving you access to Tribunal is by creating a pre-qualification stage and excluding you from any access to assessment by use of very inappropriate, self-determined criteria. Because they have not refused to assess under the terms of the Education Act but have stated that you do not meet their criteria to be considered for assessment they are not obliged to apply the 1996 Education Act and are therefore not obliged to give you your right to appeal to the SENDist Tribunal. If Lord Adonis were to Google the East of England Forum he would find Minutes of meetings where several Counties Representatives are openly planning and discussing how to prevent parents winning at Tribunal and all the associated techniques they use to ensure that their budgets are not spent on special educational needs.
I believe the Select Committee on Education has demonstrated a competent insight into the very serious deficits currently inherent in this matter.
I believe Lord Adonis has demonstrated in his response into your programme that he has no intention of bringing this very serious matter to the fore and that his blind belief that councils are not breaking the law in the face of hundereds of parents having stated this for many years, shows that his position of denial renders him unfit for the position that he holds. I would ask that Lord Adonis stop belittling the "two parents" on the interview and start listening to the real voices of the hundereds of parents and children being hurt, stressed and in sometimes destroyed by these type of circumstances and actions by LEA'S.
Our daughter Aimee has had no education since April 2005 we had to remove her from school due to the LEA's failure to provide the support she requires.
Aimee is severely autistic and also suffers from Pica and the incidents of her swallowing in edible items increased to such an extent we had no choice but to remove her for her own safety. We have been going to tribunal for about 2 years tribunal orders LEA to do something, LEA doesn't and so on.
It is only in these last few months that the LEA has finally agreed that Aimee requires one-one support in fact her statement doesn't even mention Aimee being autistic or her pica.
early intervention? every child counts?
sounds good but rarely happens
I worked for an LEA for five years, presenting cases on behalf of the LEA to the Tribunal. In my experience it is true that LEAs have conflicting and irreconcilable roles in being both assessors and funders for children with special needs, and in some instances providers too. The danger is not so much that just one public body is responsible (although organisational separation would be preferable) but the main problem lies with the LEA staff who have to operate the procedures leading to assessment, funding and provision. It is impossible for them to behave impartially and they will invariably pursue the cheaper option, which is not always the most appropriate educational solution. My manager had responsibilty both for financial management of special educatiional needs provision, and for the LEA's statutory duty regarding assessment, and she was incapable of taking decisions on the basis of the individual child's needs.
Perhaps if the minister actually had experience of what he speaks, his views might be different. I think from the interview we know how the government will react to the proposals of the Select Committee and what their spin will be.
I find something ironical that a politcial party that prides itself as protecting and championing the weak in our society, should be so blind to the needs of those who are most vulnerable.
I have rarely heard a politician so out of touch with reality as Lord Adonis on PM. He claimed that parents of children with special needs are satisfied with the system and questioned the views of the parents interviewed as unrepresentative. On what research is he basing these comments? I know of no parent (and i mean no parent) of a child with specIal needs who is happy with the current system. It was the select committee who discovered the views of parents and no less than the children's commissioner who described, for example, the provision for children with autism as a "national disgrace". Is he going to ignore all these views as unrepresentative?
For him not to see the obvious conflict of interest of LEA's as assessor and provider is beyond belief. We went to tribunal last year without legal represenatation and lost. We asked sendist to review the decision and found that it was the same chairperson who made the original decision who would review the case!! Our only recourse was to the High Court- which we won! SENDIST had made an error in Law! In the meantime my daughter has been placed in a wholly unsuitable school, which does not meet her needs in any way and she has seriously regressed.
Shame on you Lord Adonis!
Our 15 year old son has Asperger's Syndrome and is currently excluded from school because the school refuses to recognise his educational needs. He is also an Able child in Mathematics and Science and is in danger of loosing out on his GCSEs due to the repeated exclusions by the school.
We even got out own Educational Psychologists reports for the schools as they said they didn't have thhe funds to get them. When we provided the reports the school ignored them.
We asked for him to be statemented but this they also refused to do.
Every parent I have met who has a child with a Special need has had to battle with the authorities to get any help for thier child and the schools know that they only have to procrastinate long enough and the child will have moved on.
No wonder the Secretary of State for Education sent her child to a private school. Funded from her inflated salary from the public purse. i.e. from the taxes of the very people she is putting at a disadvantage for the whole of thier lives.
The sooner this disreputable government goes the better.
As a former primary teacher, I have found the support provided for my son, who has multiple mild sensory impairments, little short of pitiful. His problems are not severe, and are not uncommon amongst 'normal', children with but since class teachers have no training in SEN, and there is a national shortage of occupational therapists, speech and language therapists, educational and paediatric clinical psychologists, teachers don't have a clue how to approach his learning difficulties and nowhere to go to find out. i started out with a positive approach to the education system, but I've found teachers defensive, head teachers in denial, governors referring me to the LEA and the LEA referring me back to the school. Our support for children with learning difficulties is a national scandal, and no amount of empty rhetoric can disguise the fact. The only reason nothing has been done about it is because parents of SEN children have too much to do negotiating the byzantine SEN system to campaign effectively for its complete overhaul.
I submitted a post a few minutes ago and have now read the previous comments. I have to say that, as someone who has attempted to argue the LEA's case before the Tribunal for five years, all of your contributors make valid points. The LEAs themselves do not have a particular view, except in so far as they subscribe to the politically correct "inclusion" agenda. It is the attitude of staff which determines the life chances offered to individual children, and during my time with the LEA I found it necessary to combat both staff cynicism, and ignorance of the LEA's statutory duty.
Our experience is typical. An obstructive LEA, who make life as difficult as possible to get what your child needs. As soon as you put in for a tribunal, the LEA become interested, and try to buy you off with small concessions. Don't be put off, get IPSEA (01394 384711)working with you, and go for what your child needs. Our child is 21 now, and would have greatly benefited from speech therapy which has always been on his statement, but rarely provided due to lack of funds from the LEA.
Lord Adonis's lame comments and arrogant manner clearly sumed up for our family the government's attitude towards pupils with special educational needs. I have a 14 year old son who is autistic, dyspraxic, severly dyslexic and now, thanks to a mental breakdown during his transfer to secondary school, suffers from anxiety and depression. We live in Nottinghamshire and have been discouraged at every step from discovering his problems and seeking solutions.This attitude comes straight from the schools he has attended who take their lead, I believe from the local LEA.Our LEA refuse to statement dyslexics, preferring, we have been told on numerous occassions, to spend their money on providing provision in the school rather than spending it on the expensive statementing process. We are about to begin applying for a statement for our son, but have little faith that we will be successful
There are good fee-paying schools to accomodate many of the children so far mentioned and there could be more, but it comes down to cash, doesn't it? I tutor state -school pupils in homes which could well afford a major contribution to the education of their children. We will never vote for a government which will increase taxation to pay for proper SEN provision, but if the middle classes paid a real contribution to educating their children, then there WOULD be cash left for SEN provision for those who can't afford the existing fee-paying SEN schools.
I can only refer to my experience from having a 16 year old daughter who is severely autistic but also intelligent. She has now been at Broomhayes in North Devon, a wonderful school run by the National Autistic Society, for four years and her progress has been remarkable. Thankfully in the end our local authority saw sense but until then we too had struggled with most of the problems outlined by other contributors, mainly the inability of local authorities to organise themselves, or their overriding priority to find the cheapst option. Of course this contradicts the Education Act where the first prioirty should be the needs of the child; if only it were true! Regarding the debate about whether children with special needs should attend mainstream or special schools, most such children can only cope in a special school. Of course some can cope with a mainstream school if support exists, but they will always be the minority. Sadly too many children and parents continue to pay for the policy introduced by David Blunkett when he was Education Secretary to force children with special needs to go to mainstream schools which was based on his personal experiences of blind schools 40 years ago. It is unbelievable that such things could be allowed to happen in thsi day and age, but it did.
I have taught in various schools, both Secondary and Primary, for almost 12 years. To hear Lord Adonis say that the experience of the parents interviewed might not be typical, and that they have no way of telling if that is the case, is quite ridiculous. I don't know of any teachers who would say anything but the system is too slow, too complex and geared up to try and stop children getting extra money allocated to them. I would agree that the LAs default position is to turn children down, presumably to defer the possibility of having to find the funding and in the hope the applicants will give up. Lord Adonis clearly doesn't have a clue what it is like to have a child in mainstream education with Special Educational Needs. No wonder nothing changes.
I have taught successfully in an SEN school in Lewisham for many years. The LEA has stopped providing statements for pupils with Moderate Learning Difficulties. (This practice is now common amongst many LEA's - Bexley, Greenwich to name but two). The process has always been protracted and difficult for many parents, a significant number of whom may also have learning difficulties. There has always been conflict with the LEA as they are responsible financially for carrying out the assessment and providing the placement. When the statementing process first started many pupils with a statement were given 1:1 support from designated teachers whether in mainstream or allocated a place in a special school but this soon stopped when the LEA realised how expensive this provision was proving. Statements were soon changed or modified. Now the LEA's SEN review is proposing the closure of a very successful MLD school and placing pupils with Moderate Learning Difficulties into mainstream schooling. These pupils will not be allowed to have statements. Parents and pupils will not have a choice of mainstream or special school. Mainstream schools already have a significant number of pupils who could/should be placed in a special school. Because of the LEA's poor consultation process the overwhelming majority of teachers in mainstream schooling will be blissfully unaware that they will have a significant increase in the number of pupils with SEN. These are pupils who are unlikely to achieve C grade or above at GCSE. I wonder what will happen to them? Nor will these pupils be able to take part in a specially designed curriculum that provides yearly school journeys, tailored drama projects, film making, poetry projects as well as providing GCSE's for those whom it is appropriate. They will not be taught in groups of 1:14 by specialist subject teacher with SEN training and experience. (Many activities take place with a ratio of 1:7 or lower.
Statmenting may be difficult for existing pupis with complex learning difficulties - it is already impossible for pupils with Moderate Learning Difficulties.
A note to Julie Barlett (comment No.26)
I am satisified with the system and have had no difficulty getting a statement or appropriate provision for my son, who is severely autistic.
I have met Lord Adonis and told him that I am delighted with the education my son is receiving.
Reading the other blogs, I realise our family have been fortunate.
Our experience: One SENDIST, 2 complaints to Local Government Ombudsman for Maladministration upheld. Son with severe autism, learning difficulties and epilepsy diagnosed at 2.5 years and now 14 and are we battle hardened! Lord Adonis may not realise that an awful number of tribunal cases are "suddenly" agreed on the day of the hearing by Local Authorities who have taken families to the absolute brink, delaying the process of Statementing or funding provision in order to save money. The toll on families like ours is enormous. Many, many families are not satisfied with the process but are simply worn down. Also, re the "free" SENDIST. We both work in education (one in a special school), yet despite 238 pages of evidence from numerous professionals, we found the process very stressful and intimidating. There are still lawyers presiding, legal language is used and many parents will feel out of their depth. We did it ourselves knowing our case was extremely strong but for those who have less professional support in terms of teachers, Educational Psychologists reports and witnesses etc. the procedure of gaining your child's entitlements is stressful, adversarial and not conducive to anyone's health or welfare least of all the child. Reform it!!!
Things don't change. We had two sons with learning difficulties and nearly thirty years ago we fought the same fight that parents face today with our local (Somerset) Education Authority. It was a battle all the way for both boys.
Statementing requires money and provision requires more money. The Authority will drag their feet at every turn and it takes grit and determination to get somewhere approaching meeting the "needs" of your child.
Make no mistake,children with special needs are not high on the vote winning agenda. As parents you are a small and insignificant number and your problems in coping with your offspring will make it harder for you to exert pressure than other more vocal and larger pressure groups.
Just keep trying. I know we did make a difference for our sons. When the youngest died (aged 17) we had letters of condolence from some of those with whom we had fought the toughest battles within the Education department. They expressed their admiration for our grit and determination in seeking the best possible provision for our son.
The PM programme must follow up its report on SEN assessment and provision. It should:
1. present Adonis with the blog comments;
2. seek to interview (or 'empty chair') Ruth Kelly who got her son out of the system by paying;
3. interview IPSEA- Independent panel for special educational advice, which provides free advice and support for parents going through the system, to get a differnt view from Adonis's.
What!!!!
I am not sure that I am hearing this correctly. Lord Adonis talks about knee jack reactions, lack of evidence and so forth to justify his assertion that there is not a problem. Unfortunately he is completely deluded! I was a deputy headteacher in an upper school in Buckinghamshire and now lecture in education and my wife is a Special Educational Needs Coordinator and we both have absolutely no doubt that the comments of your contributors regarding the horrendous difficulties in gaining suitable and adequate support for their children are typical. In fact , when we were concerned that our daughter should have more support we discovered that there was not an Educational Psychologist in post in Bedfordshire at that time! So much for knee jerk!!
Wake up and smell the coffee, Lord Adonis!
I am 100% on the side of all the parents who have suffered under the hands of the corrupt system of SEN
Only the heroes of 'Lord of the Rings' could break down the evil deception that exists at present.
It has to be changed. Too many children are suffering and continue to suffer.
Token support is not good enough. Fully qualified specialist teachers and therapists are needed to support all areas of SEN. Learning Support Assistants cannot be expected to carry this huge responibility.
Could Ingrid Clark (comment 45)-who does realise the problems everyone else faces- tell us which LEA and school has provided so well for her child? Then everyone could move there and hope for the same.
Could Ingrid Clark(no 45) -who does clearly realise the problems everyone else faces- tell us which LEA and school has provided so well for her child? Then everyone else could move to the area and hope for the same.
Again I wanted to recommend IPSEA ( Independant Panel of Special Education Advice ) www.ipsea.org.uk
We used them when our daughter who has Down's syndrome was refused a statement. Through their help we got her statemented with full time support and it didn't cost us a penny
Its sad that we have to fight for our children and what they deserve and we have found early intervention has been essential to helping our daughter
At the moment we want to try and keep our daughter back a year ( she is the youngest in her class ) and even consider doing a dual placement after hearing how sucessful it is for other children in other parts of the UK but our LEA don't agree with any of it, so still the fight continues
I have cerebal palsey,despite this my parents had to fight to get me statmented when i first went to school. One educational psychiatrist told my parents that my "problems may clear up when she starts school" ! Throughout the local authority resisted a statment and it was obvious it was all about money.My junior school head teacher told my parents not to let me go to the local secondary school as I "would be lost"educationaly. A suitable private school was found and my parents said they would pay the fees but wanted the LEA to pay for the full time teacheing assistant I need. They refused and with the help of Mr Friel we went to a tribunal; even the LEA'S barrister said we had a case and they agreed the funding.It was all a waste of their money and they were wrong.With the help of my school and my assistant I have 7 GCSE'S at C or above , I am now on an A level course .I am very sorrow to say many children with special needs are "written off" and do not get the help the need to achieve!!
Note to Ingrid Clarke (45):
1. I would like to know where you live, because i (and presumably everyone else on this site)want to move there!
2. How did you get to meet Lord Adonis? i will be writing to him and asking him for a meeting. I wrote to our local Conservative chair of education commitee to discuss our problems and she did not want to know- she refused to meet me. Yes that's right an elected official refused to meet a member of the electorate. So much for local democracy Lord Adonis!
Note to Ingrid Clarke (45):
1. I would like to know where you live, because i (and presumably everyone else on this site)want to move there!
2. How did you get to meet Lord Adonis? i will be writing to him and asking him for a meeting. I wrote to our local Conservative chair of education commitee to discuss our problems and she did not want to know- she refused to meet me. Yes that's right an elected official refused to meet a member of the electorate. So much for local democracy Lord Adonis!
With regard to the ghastly approach to SEN tribunals this is something that i am well aware of, because we at Hypermobility East Anglia group are constantly having to give parents advice on how to go through the process, i have to do go and deal with a case in June, which is particular difficult, which will result in me having a slanging match.
Lord Adonis what planet is he one, to say that there is no trouble with them is plain rubbish, i know of families who are distraught, broken up as the stress is to much, not only that the LEA and the government are in breach of the Disability Discrimination Act, because if a child have specific needs it should be catered for. We as a charity would love to be able to provide specialist equipment, but why should we when this is clearly down to LEA.
When i heard this was going on i sat in disbelief utter lies from the government, so much for Education, Education, Education, better still more Lies, More Lies and more lies
For any parent who does not have an SEN child that needs to go to tribunal against an LEA decision, would not believe how staggeringly difficult,expensive, frustrating and depressing it is.
It is bad enough that you have an impaired child that is difficult to live with at their best, without having to spend 拢3500.00 on a case that the LEA conceed to the night before tribunal, after you have spent your money.
All SEN decisions are based on LEA budget. We took our LEA to tribunal over our sons provision for mainstream school, he has a diagnosis of an Autistic Spectrum Disorder and they were only prepared to give our son 10 hours per week 1:1 support. After a long battle and a great deal of money spent they caved in the night before tribunal and he now gets 31.5 hours per week 1:1 with one hour Autism Outreach Support. These tribunal cases appear to be commonplace within LEA SEN depts.,as you cannot give a child 1 years worth of 1:1 support retrospectivly. Therefore money saved by them and money spent by parents fighting for their childs basic rights to be educated (with the right support) to the best of their ability.
Fortunately at that time we were not a low income family and whilst we could not afford it we did. What do others families do?
We are now experiencing these same curcumstances AGAIN with the same LEA for my niece, a tribunal date is to be set.
Two children in the same family, Lord Adonis would have us believe that it is an unfortunate coincidence and that we were TWO of his 1 in 4 that ends at tribunal..... I think not.
Lord Adonis ignored the fact that a large proportion of parents are dissatisfied and do not go to Tribunal for the reasons detailed in your report. If Tribunals were accessible to all, the numbers would be much much higher.
This governments has issued a number of DfES guidelines to LEAs that ignore statutory obligations under the Education Act and Disability Discrimiation Act, so the LEAs are briefed to behave in an illegal manner when it comes to SEN. It is so wrong it is rotten to the core.
AMMENDMENT NEEDED PLEASE>
Apologies for my last blog entry I need to correct my last line to 1 IN 400 NOT 1 IN 4.
Thank you
I moved back to the UK in August, having spent nearly 20 years living in New Zealand. Things weren't great there, so our expectations were not massive. I think there will be adequate support here (eg, we won't be paying extra for someone to toilet my son) but ... it takes so long. We arrived in August. He started school - he had to, being 7 - in mid-September, which was the fastest we could get anyone to answer phone calls. We started the statementing process in September. I got the draft in December. We still have no statement, and it is unlikely it will be sorted before the end of the school year. Oh, I was bolshie. Well, wouldn't you, if a statement made no reference to quantity of provision? (I know enough to know that isn't good enough). And there was no speech therapy report. Actually, we still haven't had the speech therapy report. Once the final version is done, there will be a battle over whether he gets 25 or 30 hours of support ... I am lucky, I understand the system and I'm a lawyer by training. But what about the others? If you don't have those resources, it is a disaster. Sorry, Lord Adonis, you're talking through your b*tt*m.
I am a parent of a child awaiting our first Statutory Assessment statement - I have been told by bodies in the know that it is likely to be turned down due to our daughter having a diagnosis for ASD and ADHD and because it is our first time of asking. We have already waited nearly 3 years for her diagnosis to be confirmed and now we may have an uphill battle to get her the support she so badly needs to participate in her school. As the UN convention on the rights of the child and the SEN code of practice and indeed the Disability Discrimination Act are there to ensure our children are seen as part of the human race where education is vital to enable independent living, I can't help but feel that something is going badly wrong. As a disabled person I welcomed the inclusion agenda as a way of including disabled people into mainstream society by abolishing segregation in education showing we can grow up to accept difference and understanding that life is not all about the body perfect. I am sad to say that it appears like Every Child Matters is a lie - it depends where you live and what your school or LEA is prepared to spend its SEN budget on. It has become a money saving excerise - not putting the needs of our children first
Meantime I battle every day knowing the school sees my daughter as a disruption, and I fear we are losing the battle to keep her 'happy' when her isolation, and disaffection in school increases each day. I feel our focus may be turned away from supporting her to battling for the rights to have her access needs met through appeals and paper trails which have already dominated the first three years of her education.
Todays news has made me weep -
Response to comment 51
It is Hackney and the specialist autism provision at Mossbourne Community Academy
I would be grateful if PM researchers could check whether Lord Adonis is being truthful when he says that parents do just as well at Tribunal without legal representation, as I find this very hard to believe. We are going to Tribunal, and know that our LEA will engage a barrister to rubbish our attempts to get my severely disabled child the help he needs. I know that we won't stand a chance of winning unless we get our own legal representation.
All the evidence in his Statement comes from staff employed by the LEA, and their recommendations for his education merely reflect their loyalties to their employer, and not my son's special needs. Therefore we will be paying a fortune for independent advice.
Parents are depressed, exhausted, and financially crippled by this process. As if we don't have enough to cope with caring for disabled children. The whole system stinks.
Am I the only person reading this distressing litany of failure and political blind-eye-turning, who thinks Radio Four should be doing a Special on this subject?
There is plenty of evidence, clearly.
No government (who let's face it starve the LEAs of the funding it could ring-fence to put many of these matters right in the short term) should be allowed to tell outright lies and patronise members of the public on 大象传媒 Radio.
Not enough educational psychologists? Then INCENTIVISE THE COURSES! (duhhh)
Fifi
When your LEA attempts to minimise your concerns for its plans for special needs provision, it is wonderful to read the comments posted.
The LEAs have too much involvement in determining who gets what.
The statementing process is open to abuse, by delay, by the LEAs.
Gaining a statement for an MLD child is becoming impossible - and that is determined by the LEA.
The LEA will opt for the cheapest option and will cloak this in "inclusion" language. The argument has moved on from simplistic notions of special school bad: mainstream good. The argument should be focused on correct provision. Is failing in mainstream a form of inclusion?
Watch out for "personalised learning" another phrase coming your way to convince you that mainstream schools are managing every aspect of your child's learning. Special schools have done this for decades, and let me tell you, it is labour intensive, if it is going to be done right.
We are fighting to keep open a school for MLD pupils in Jack Straw's constituency. We had a public meeting last night and, in 30 years of being a teacher, I have never witnessed such a sense of blight by parents about their own time in school and their sense of absolute pride (even a sense of redemption) in achieving proper support for their children, at our school. It was truly moving and humbling. I wish the authority had come along.
Today we have been inundated with parents telling us about the action they have already taken and with ideas for action and requests for our assistance.
Re message 46:
>>
Too right! We went to Tribunal for the third time last July. On the first day, the LEA had no real evidence and no witnesses, and tried unsuccessfully to use procedural measures to stop the hearing going ahead. We returned in September for a second full day at the end of which the Tribunal was minded that there wasn鈥檛 a school that could meet my son鈥檚 SEN within daily travelling distance. I then proposed that my 6 year old son, who has autism, rather than go to boarding school, might attend the local LEA Special School part-time and also have an ABA (Applied Behavioural Analysis) programme at home; everyone seemed happy with this proposal and the Tribunal adjourned so the LEA and I could sort out the details, with a back stop position that we would go back to Tribunal if it were not sorted out. The back stop hearing was due to go ahead in mid-January. The day before, after my solicitor persuaded the LEA we would get our costs if it went to a third day, the LEA agreed to our proposed arrangements. From start to finish the Tribunal process took 10 months.
Other people have referred here to LEAs鈥 tactics of obstruction and delay. Yes, that is what our LEA is about, in my view. Refusal to carry out Statutory Assessment saves money. Eventually, when Statementing can be avoided no longer, failure to describe all of the child鈥檚 SEN means there鈥檚 less to go in Part 3. Part 3 should be vague, if at all possible. Consequently the resulting Statement is unenforceable, because vague, and incomplete, because Part 2 has failed to describe the child鈥檚 SEN properly: this saves a lot of money! When I read my son鈥檚 old Statement I wonder why the little boy it describes needed to be Special School at all: it basically said what a lovely little boy he was and wasn鈥檛 he doing well.
Yes of course, R4 should do a special on this. Most people will know a family with child/ren with SEN and it would generate a large amount of interest.
Don't let Adonis get away with his inaccurate and feeble remarks. |
There is enough expertise and experience expressed on this site for R4 to make a programme based on it , starting tomorrow.
My 12 year old son has aspergers syndrome and ADHD. We first suspected the problem when he was 4 when he was experiencing problems at nursery school. When he joined primary school we pursued a statement with the help of the school staff. It sounds like we were traeted a lot better than the posters here. We quickly gained a Level 9 (24.5 hours equivalent LSA support) from the LEA without any trouble or cost . Both my wife and I are middle class and degree/professionally educated. I think this helped enormously, not because we could afford the legal process (it didn't cost us a penny) but that we were able to submitted well articulated and research arguments and documentation and were confident in standing our ground. As a result the LEA have been very supportive and we have not had any obstructions from them at any of the annual statement reviews. The continue problem we have experienced though is with the schools themselves. Although they receive the money from LEA they always seem to have trouble recruiting LSAs or perhaps they don't want to and would prefer to spend the money elsewhere. We have just had strong words with the school at the last annual review because we found that although they were receiving payment for 24.5 hours LSA support per week, our son was only receiving 3!!!!
I aympathise with the problems that many of the other bloggers have had in obtaining support.
We were lucky in having an LEA who fought against discrimination and threatened exclusions. They also adequately funded a SEN statement. But the school, a well endowed school with few children from deprived backgrounds or with language problems, have been less than helpfu l in its the administratation of the precious funds. The headmistress and parents see the school as a publicly funded 'prep -school' whose main objective is to get as many children as possible into the independent sector or to selective schools in adjacent boroughs. The needs of special children are seen as a handicap in this and little attention is given to seeing they have the attention that they diserve and which they are funded to get.
My complaint with the LEA is about their failure to stand up to rather intimidating headteachers to see they perform their statutory duties towards special needs children. They are often intent on getting rid of them - and with many ASD children especially those with Aspergers - it is relatively easy to provoke a situation which might lead to exclusion.
Greater surveillance of Schools administering SEN statements is needed. Otherwise much of the hard won funds will be dissipated on poor teaching delivered by poorly trained special needs assistants.
We are another family who have had a 7 year battle with the LEA, trying to force them to provide the legal minimum for our autistic son. And yes, it cost us more than we had to fight the 2 tribunals, and has left the whole family suffering from depression. It also cost my partner's job, though in doing all the research needed for the tribunals she has become an expert on autism in education. We thought this would help, but as other parents have found, this just leads to accusations of Munchausen's. Sometimes you just can't win.
Lord Adonis claims that LEAs are democratic. Here in Leeds we have a flagship LEA - run by a private company. I fail to see any democracy there. But it does show Lord Adonis' ignorance (to be generous) of his own subject.
Another factor that Lord Adonis has missed is that there now exist forums on the internet where parents give each other advice, support and encouragement when fighting their LEAs, so the number of tribunals is set to rise noticably.
After 7 years our son now gets the legal minimum hours education a week at the Home and Hospital Teaching Service school. The perfect environment without all the sensory traumas and bullying of mainstream and for the first time in years our son is peaceful and happy. But the LEA do not want us to tell anyone in case other parents find out that it is possible. And yet it would cost them less to allow access to the children who need it than to fight parents.
Such a senseless policy has to change soon.
Like many others I found myself wondering just how government ministers manage to become so out of touch with what really happens.
Reading the comments here I am deeply saddened that things seem to be so much worse than when my sons were failed by the system nearly 20 years ago. Then their schools failed to spot severe dyslexia; we had to pay for independent assessment; there was no educational psychologist (he having moved north as being unable to afford life in the south-east); there had been no speech therapy in primary school because the LEA no longer provided it. When help was eventually offered to my younger son it came in the form of closely typed duplicated notes on 'how to study'. The one thing I have to be thankful for is that there was no National Curriculum to make them feel even more like total failures.
The numbers of students being diagnosed at university and only then obtaining useful help shows how many are failed by the school system.
The school experience affects one for the rest of ones life. It is a dreadful indictment of the system that so many parents and children are still suffering.
Can I add my voice to those asking PM to investigate further please.
Fifi: re Educational Psychologists and the dearth thereof .... When I switched careers into psychology, as an ex teacher I gave serious consideration to that role, as did many of the people with whom I was studying. However, what put me, and others, off that role was that we heard time and again from people in the profession that they were rarely able to focus on cases as they would have wished, they were extremely stretched, yet it wasn't easy to get a post. Which leads me to speculate that there is a dearth of funding for Ed Psych posts. They are, incidentally, funded locally, not nationally, so different councils will put different levels of resourcing into the profession. The course is three years, on top of a three year degree course, so the training currently takes around six years. After that, starting salaries are around 拢25K, the maximum being around 拢58 for the most senior. Not many will make it beyond about 拢35K, the mean for an Ed Psych.
To summarise: To get into the profession , you must study for six years at Higher Education level, and after that you'll be paid about 拢25K, possibly moving to around 拢35K after a few years. All this with an onerous and professionally unfulfilling workload. It was the latter aspect of this which deterred me from taking up the challenge. I forget quite how the funding worked for the study, but I vaguely recollect that this, too, wasn't easy to secure.
Peter Webb - you're famous! In case you haven't seen the latest new thread from Eddie.....
"Peter Webb. Can you help?
Eddie Mair 10 May 07, 11:53 AM
Yvonne who did our report last night on children with special educational needs would URGENTLY like to hear from Peter Webb, who posted this comment
"No 34: At 06:21 PM on 09 May 2007,
Peter Webb wrote: I worked for an LEA for five years, presenting cases on behalf of the LEA to the Tribunal. In my experience it is true that LEAs have conflicting and irreconcilable roles in being both assessors and funders for children with special needs, and in some instances providers too. The danger is not so much that just one public body is responsible (although organisational separation would be preferable) but the main problem lies with the LEA staff who have to operate the procedures leading to assessment, funding and provision. It is impossible for them to behave impartially and they will invariably pursue the cheaper option, which is not always the most appropriate educational solution. My manager had responsibilty both for financial management of special educatiional needs provision, and for the LEA's statutory duty regarding assessment, and she was incapable of taking decisions on the basis of the individual child's needs."
As part of our follow up, could Mr Webb pleas email us: pm@bbc.co.uk. Thanks."
Peter, I hope you're reading this and are able to respond!
..And Big Sister, thank you for that. Explains a lot doesn't it. I repeat: duhhh.
Fifi :o(
I'm grateful for Peter Webb's honesty. As a manager in an independent residential school I often attended SEN tribunals to support parents trying to get their children into our school. The remit given was so narrow that we failed most of them - it was only about money in the end, not quality or holistic needs - so I decided not to attend any more tribunals and leave the parents to do the fighting! The (potential) virtual monopoly of the LEAs - as funder and provider - means our school is constantly under threat. On the other hand the government gives the message that a continuum of special educational provision is valued. The mis-match between rhetoric and reality is not helpful. I feel for parents, already under massive strain due to the challenges their children present to family life - I hope we can sort this out to make a more positive approach to SEN provision.
We are currently battling with our LEA regarding our daughter who has learning difficulties as well as a medical condition known as Ehlers Danlos Syndrome. Our daughter was statemented back in 1998 and we have had very little to worry about until we hit secondary education.
How the MP for special education can say that all parents are happy with the system i will never know. Our daughter has been in secondary school for two years now and has been bullied by her peers as well as teachers. We have been to panel four times in the last year to try and get her into a special needs school. our daughter is now refusing to attend school having had three months off with a broken Ankle. The school she attends refused her access with her wheel chair even though it was a new building with disabled faciilities.
I would like a meeting with the MP to inform him how on a daily basis we are fighting the system, our daughter has now been placed on a waiting list to be seen by a mental health team as she has very low self esteem and is not sleeping.
I have now got to make a decision as to if i can continue to work as i am finding it very difficult to have a work life balance...
My daughter at a recent meeting with the education psychologist described her school life as being 'TRAPPED IN A CAGE'
I would like to know what Lord Adonis thinks to that????
Any help on where to go from here would be appreciated.
Cheryle & Les Howard
"What's your experience of getting the education help they need?"
I'm a School Governor in North Kent. I have been Chairman for many years and have acted as a Governor in two primaries and one secondary school, all in this area.
I am profoundly unimpressed by the majority of the public servants in the Local Education Authority. In Kent the Director of Education is paid remarkably well - his salary is the highest for that kind of post anywhere in Britain. There are large numbers of staff involved in the administration of education, all well paid with excellent benefits and pensions. Frankly, many of them do not have the skills or abilities that one might expect from professionals.
By contrast, in many schools (not all, I accept) it falls to the senior staff - usually the Headteacher - to battle with the authorities to provide adequate funding and resource for children with Special Needs. I have sat on Exclusion Panels where children have been permanently excluded from schools - as a means of ensuring that their care provision is enhanced to suitable levels. There was a tacit understanding by the participants - including the unfortunate parents - that this was the only means of ensuring adequate provision. And this led to what amounted to conspiracy to manipulate the system. The problem is that parents themselves are often not capable - for whatever reason - of fighting their corner.
Education for those needing Special Provision continues to be a lottery. Those who shout loudest will, eventually, be provided for. But I do not believe that LEAs do very much more than carefully control their budgets. Certainly they do not actively seek to help parents, as this will cost money. If one were to be cynical one might say that - given finite budgets - money spent on children and their needs leads to less money being spent on administrators.
The whole system is geared to saving rather than spending. Given that is so it's hardly surprising that parents feel they are powerless. In the meantime, it's the children and the community at large which suffer.
My son is 9 and is 3 years behind in his education, with dyslexia and mild autisem. His school teacher admits he needs more help but the School SENCO and Hammersmith and Fulham say no to a statement. The excuse being their are others with more problems and they don't have a statement. I will have to go through hell to get it, but I will fight. I am looking at private schools including the one Ruth Kelly sent her son to, but my son is so far behind he may not be able to go there.
Lord Adonis is either incompetent or dishonest, as if he did his job properly he would know there is a major problem and do somthing about it!
Please send him all your responses to his utterly ignorant comments.
I've worked in Special Education in the East of England for fifteen years.
I can tell you for a fact that most of the opinions parents give here about LEA people are dead wrong.
They are actually worse than this ; far , far worse.
Parents, believe it or not, when they are talking to you and flipping you off and abandoning your children this is their *best* behaviour. You wouldn't believe the stuff that goes on that you can't see.
A relatively recent remark for example. I quote, verbatim : "Can you interview XXXXXX please ? You don't want him, he's horrible, but if you interview him it looks like we are doing something about it and we can put off making provision for him to get him past 16". (It says much for the total unaccountability of these bureaucratic thugs that they are so open about it)
LEAs will lie continually about the rules and laws, whether parents can have statements or assessments, they will block and delay and ignore comically obvious conditions. The DfES colludes in this by refusing to take any action against any LEA caught (ask IPSEA) other than to say "that's naughty , don't do it again".
Okay to be fair, in fifteen years I've probably met half a dozen people in LEAs who are actually trying to do their best for the children (like Peter Webb seems to be) but they are a tiny minority. Most of them, quite literally, do not give a damn about the children.
Their interests are themselves ; finances ; personal power ; internal politics ; promotion ; covering their backsides.
The needs of the children, despite the endless whines "We're only doing our best for the little children" ; this statement basically means "XXXX off how dare you question my motives ?" are of no interest.
They only care on two counts:
(i) if it gets into the paper/on the TV. The most effective parents I know use the media a lot. I knew one couple who (more or less) simply copied all the documentation straight to the local TV station. It worked.
It is true to say that with almost 100% consistency, parents who make a row or show strongly that they are prepared to fight get a result and parents who quietly work with the LEA get dumped on.
The attitude of the LEA people, and apparently Andrew Adonis as well, is that as long as no-one finds out how appalling it is and how dreadful the provision is, who cares. The apotheosis of spin.
(ii) it causes them direct problems ; the parents keep pestering them or using legal threats.
To almost all LEA bureaucrats, a child is not a person. A child is a collection of documents from about 5mm to 10cm thick. He/she is a "problem" to be "sorted", as cheaply as possible, something to be moved from the in-tray to the out-tray.
If Adonis seriously believes all parents, or even a majority of them, are happy with the process he is with the fairies.
The posts here that surprise me are not the ones that go "we had a massive fight" "it took four years" and the like ; it's those parents who seem to have got provision without too much of a struggle.
Sorry I can't suggest anything for Cheryle Howard (message 76) but as far as I know, Lord Adonis isn't, nor has ever been, an MP. Please correct me if I'm wrong.
I am currently on the training programme to become an educational psychologist - a role which involves conducting statutory assessments.
The funding situation with our training course means that the number of places in the next cohort have been cut, and it is possible that people in the current cohort will be unable to complete their training due to a lack of training positions becoming available for years 2 and 3 of the new doctorate programme.
This will mean the supply of EPs is reduced even further making it potentially impossible for any local authority to meet their statutory assessment requirements.
The DfES, when lobbied by MPs, has rejected the idea that this problem is their concern calling it 'a local authority issue' but I feel this view is short-sighted considering there is already a national shortage of EPs, and as this forum indicates...a dire need for our services!
I have have found our LEA far from helpful in meeting the nneds of my twins, both of whom have autism. They refused to assess my youngest twin initially until his paediatrician took up our case. My elder twin's difficulties were disguised by his previous school (he passed his key stage 1 sats desite being assessed 4 months laters as working toward national curriculum level...he could not write!). When I approached the LEA, I was told not to make a fuss as he no longer attends that school.
My younger son's provision was so poor, that he didn't sleep properly for 2 years and self harmed. The LEA refused to allow my son to attend a unit school...18 months, his current school has proposed putting him on 30 points and sending him to a special school part time; if the LEA agree.
When my son was discriminated against at his previous school, I could not afford specialist representation. Although the panel found in our favour that he had been discriminated against, the barrister representing the LEA was far more adept than I was at arguing against any detriment to my son, despite him telling us how stressed he was.
In summary, there is no decent provision available for children with complex needs without a fight and without a healthy bank balance. The LEA makes there decisions based on budgets alone. I was told time and time again by my children's previous SENCo that there was no money available to fund a laptop, occupational therapy, speech and language therapy or music therapy and that I should pay myself. Like most parents, If I could pay, I would. I am now studying autism so that I can provide the interventions that my children cannot get through the LEA.
Lord Adonis should know better but then perhaps he should share the experience of the masses rather than look through rose tinted well funded glasses.
I have a duaghter who is 13 and has had a statement which funds her to attend an independent special school for dyslexic children. To get this she has to have multiple special needs - you can not get funding in my Borough unless you have more than one thing wrong with you HOWEVER AWFUL the need is.
Lord Adonis is utterly wrong. The process has real cost to parents and it is NOT just money. It costs huge amounts of time, a lot of money and incomprehensible stress. The stress was so horrendous that I, a professional middle class mother who is used to systems, ended up in hospital. I wish I was the only person I knew who had suffered major health problems created by the stress of the process.
Good LEAs would wish to provide more support but there is insufficient funding and they are between a rock and a hard place. The system has a fundemental flaw and this means that children who should and could be in mainstream if they were properly supported are out of school or failing and children who need special school provision are not getting it.
I didn't hear the comments made by Lord Adonis but I've gleaned more than sufficient from other contributors and would like to weigh in against his astonishingly ill-informed views. Iam the parent of a severely disabled teenager (both physically and mentally). Yes, absolutely one has to fork out for assessments etc. and it is all but foolhardy to go to SEN Tribunal without a solicitor and a very good one at that. More expense, which we certainly could not afford and stress piled upon stress as if having a disabled child and all that goes with it were not enough.
The lady who estimated this process at say 22 months was right on the button. There is no satisfactory provision in our county for our daughter but the LEA were not interested. They wriggled, prevaricated and used any means possible to drag out the process and to avoid addressing the situation. I know many parents who have faced and still face similar circumstances.
We finally won our Tribunal but we had to return for a second hearing (more expense) despite the fact that the Chair of the first Tribunal directed the LEA to go away and sort out appropriate provision for our daughter.
The attitude of our LEA is so entrenched that they ignored the Tribunal's directions rather than create a precedence. Fortunately our solicitor had found one.
Any approach that suggests the current situation is in any way acceptable is disgraceful and an affront to British values.
How can a LEA assess and fund the sen provision within schools without stepping outside their budget? I have no doubt most LEA officers wish to be able to fund the educational needs of all the children in in their care, but the money is just not there.
My own child school had the sen budget cut thru the use of a clever scheme.
THE FUNDING BY THE LEA FOR SEN WAS ASSESSED ON THE NUMBERS WITHIN THE SCHOOL THAT RECIEVE FREE SCHOOL DINNERS.
Not on their needs, but on if the child qualified for free school dinners.
Some clever accountant must have worked out this would reduce the burden of funding Sen within the county.
The sad thing is: all parents of children with special needs have to fight for their child and despite the good work of NGOs we all feel as if we do it in isolation. The authorities know and exploit this weakness. Clearly, Lord Adonis, an education guru, is ill qualified for his self appointed post. Perhaps he needs a bit of extra help.
As a mother of a 12 year old son with special needs I would just like to agree with what the many other parents have said on this forum. We went through an SEN tribunal last summer and lost. Because our LEA had been 'economical with the truth' at Tribunal we wrote to SENDIST and managed to win a review of the decison. Before we went back to Tribunal for the review we came to an agreement with our LEA (with the help of a solicitor) to send our son to a school where his needs would be met. Over the years we have spent thousands of pounds on assessments, legal fees etc.The whole process is draining emotionally and financially. As Sean Hanley stated only the articulate and monied can make the system work and then only with a great struggle. There must be so many SEN children without articulate parents who are left to flounder - it's a disgrace. So much for 'Education, education, education'.
Three years ago we challenged our local authority over school provision for our deaf son. We had to take the local authority to tribunal with legal support and independent specialist reports costing in excess of 拢10k. He was moving from a lovely, small village primary school where he was not allowed to sit all the SATS exams. He was clearly failing to access an education and his self esteem was low. The local authority, following its inclusion policy, wanted him to continue to a large secondary school where conditions were even less suited to his needs. The arguement used was that even if he wasn't deaf he wouldn't have achieved more. Thankfully the tribunal found in our favour and although this means our son has to board away at school during the week he is now getting an education, is a happy confident social teenager and proving that he can achieve academically and now has the confidence to play for a high standard football team at weekends. One day hopefully he will now be able to give back to the economy and society because he will be employable and confident. These situations are incredibly traumatic for parents and children. It sometimes appears that advantage is taken of vulnerable families by piling inadequate education provision for children with special educational needs on top of the difficulties they already have. Why do families have to fight for this.Deafness like many disabilities can be very isolating, poor education and lack of self esteem perpetuates this. Many of these children have huge amounts to contribute to society. We were lucky to be able to take our sons case through to tribunal. What about those who are unable to do this. Every special needs child is different and the answer to giving them access to education is unique to that child. Coming originally from a local government finance back ground myself I am in no doubt that limited money and budgets play a big role despite claims that they don't. Inclusion policy for example may be a political ideology that is believed to be right most, but for some children it is wrong and the reality is that some children feel more excluded, both academically and socially. Surely the huge response to this item must be an indicator to ministers that this system needs to be reviewed and that parents are not happy with the hoops they need to jump through to adequately meet their childrens special needs.
Lord Adonis commented that access to the tribunals is free. He is either very badly informed or dishonest.
We started down the process and spent 拢2000. We discovered that the additional reports, solicitor fees etc would mean a grand sum of about 拢12000 to 拢15000 with no guarantee of a positive outcome. We gave up as we can ill afford to lose that sum and the stress for the family was too great.
The idea that all special needs pupils can be met in main stream is irresponsible and damaging. [As Ruth Kelly can testify!]
Given no alternative we are going to educate our son at home.
No surprise to hear Labour propaganda on the nationally-funded media, spinning their web of deceit.
The problem lies with the apparatchiks in the LEA's, and they are in cahoots with the DfES to minimise spending on individual children.
It seems to be an article of socialist faith that the needs of the many are more important than those of the few, and it's OK to deprive SEN children because "it's not fair for them to get more money than other kids".
The DfES guidance to SENDIST Tribunals states they are to ignore any risk to the child. This is the Labour government sanctioning the abuse of the children it is supposed to protect, and undermining the Health & Safety Acts, Children Act and Education Acts. So much for all the mealy-mouthed promises from Blair, Brown, et al.
Unfortunately, I doubt whether things will change under the Conservatives - after all, Conservative-run Councils are as guilty as any other. Hampshire's SEN unit has a full-time member of staff dedicated to representing it at Tribunals, it routinely retains barristers to represent it at SENDIST hearings, and its staff lauch personally abusive attacks during hearings on other members of staff who disagree with them.
If the DfES and LEA's spent as much time and money doing their jobs instead of shirking their responsibilities, SEN children would be better off. We have spent 拢40,000 and the past 10 years fighting for our son and daughter. At every point where Hants LEA could do something to undermine them, they did so.
Special Needs is a Kafka-esque world, in which the individual is pitted against the full might of the state. No branch of government will help - not the DfES, Local Government Ombudsman, HSE, District Auditor, or County Councillor.
There is no answer in seeking legal redress. If our children sue the LEA for the harm they have caused them, it will cost the LEA far more than they saved from not providing for their needs. But it will be all of us as taxpayers who pay in higher taxes, while the bureacrats waddle off with their index-linked pensions.
The current approach is so short-sighted. Society as a whole will carry the long-term cost of children who grow up to be unproductive and potentially dangerous citizens, when a fraction of that money would help them become net contributors to society. But shovelling money into the current system won't help - LEA's would just spend it on more barristers and staff to help them run their one-size-fits-all utopias.
It's clear Labour won't help us, but who will?
As the grandfather of a severely dyslexic child I would endorse all the comments about the tactics of evasion, misleading (deliberately?) statements, delaying tactics, refusal to apply the Code of Practice etc., etc.
It cost my daughter 拢20,000 in costs and school fees before the LEA withdrew just before the Appeals Tribunal having saved itself two and half terms' fees.
We were told by the LEA Education Officer dealing with our grandson's case that the LEA would go to appeal even with a weak case. If the decision of the Appeals Tribunal were to be backdated it would make a lot of LEAs think twice before automatically going to Appeal.
My daughter's MP tells her that she gets an average of two or three parents at every one of her clinics complaining about the LEA's special educational policy (yet she is doing nothing about this!). This must be happening round the country. How can we collate and co-ordinate this information ?
We desperately need a Jamie Oliver for Special Education to shame this Government into action.
We have a 14 year old son who was diagnosed with Asperger's Syndrome in 2000. Because he presents as well behaved, articulate and bright his special educational needs have been grossly undersestimated and as a result of appalling bullying by students and teachers he suffered a breakdown last year and has been out of mainstream school eversince. We have requested an assessment for a statement since he was diagnosed. At the time the LEA said that his educational needs were not severe enough to merit a statement. He should have been followed up but never was and because he acheived what he should achieve for his age the schools refused to support a request for an assessment. He was given a statement of special educational needs in February of this year and now attends a referral unit until a decision is made by a tribunal in June. We have requested that he attend an Asperger specific school 6 miles from our home and this has been supported by all professionals involved with our son but the LEA refused. A new unit is being set up some distance from home (about a 40 minute drive) but no funding has yet been agreed. We have had to jump through hoops to support our request. My son has had to be prescribed medication for anxiety and depression which he is still taking. I have been diagnosed with severe stress and depression and have also been prescribed medication. I have virtually taken on the role of a full time liaison officer making sure that all agencies involved are kept up to date with our progress (for want of a better word). Parents in similar positions to us not only have to take on the "system" and write endless e-mails and letters, make hundreds of phone calls but we also have to deal with the everyday problems arrising from having a child with special needs. Parents wanting to obtain a statement or special education for their children need to be tenacious, articulate and just bloody minded to last the course. The policies might exist to support children with special needs but they aren't worth the paper they're written on. THEY DON'T WORK IN PRACTICE! When will someone listen? There are enough parents saying the same thing to make the government question the effectiveness of the policies surely.
I am in the rare position of having a son with Downs Syndrome thriving in a mainstream school with full time support. But what an effort to get there! I are fortunate to be well educated, resourceful and married to a solicitor. LEAs have a breathtaking range of techniques for making what should be a simple process as obscure, difficult and ambiguous as possible, all with the aim of spending as little money as possible.
It took us 3 years to get his support right; with the right support, children with SEN thrive in mainstream school. Without it, it's a disaster for everyone.
I see others have put in a good word for IPSEA - I'd like to add my support as even with our legal connections, we couldn't have got through our Tribunal without them.
We are in the middle of a statement battle with our local LEA in getting our daughter a suitable placement for her further education. Right from the start, we have had to pay out serious amounts of money in assessments to enable us to get to the tribunal process in the first place. My wife has stopped working as a teacher for the foreseeable future as we could not cope with the workload required to gather all the required information over the last year. We are expecting to spend up to 拢12,000 in fees, lawyers & professional organisations before we have hopefully got what we need for Lucia. We are spending a lot of money paying for private therapies & lessons to enable Lucia to keep up with her peers whilst all these court matters are in progress. The waiting lists for LEA assessments are measured in years sometimes. Lea officials are there to obstruct at every level and lead the unwitting down dead end alleys in their efforts to avoid spending money on educational provisions as needed by the childen. They are desperate not to encourage parents to take up the option of going for a statement. It is a farce for Lord Adonis to suggest we are in the minority and the majority are happy with the current regime. If you are not middle class and/or prepared to spend 拢10k and more you have no chance of a fair hearing or assessment for your children. Thankfully there are some independant charities out there giving advice to enable the parents to fight the current system, as fight we must to win. SOSSEN! in Twickenham is one such organisation. Call them to find out the scale of resentment against the LEA and its funding methods. Please do not let this matter drop away in nothing. Thank you. Simon bain
As a regular listener to PM, I have never been tempted to blog (until now).
As I drove home last night I was incensed by 'Lord Addonis'. Unfortunately the man is in a position where he could do a lot to help children with special educational needs, and their parents. However, he lives in denial of the truth. Listening to him enraged me that he can be so oblivious to the plight of those who struggle against LEA clerks, who see it as their duty to prevent statements being obtained. Using delay tactics, using and abusing the system set up to provide protection for those who would benefit. Why? to save money on Local Authority spend.
My wife and I fought the system on behalf of our son, we were one of the lucky ones. It took us 2 and a half years of fighting the authority - or should I say certain individuals in that Authority, who obviously thought they were 'doing their job'. The fact is our son was statemented. At tribunal the chairman found in our sons favour on all points and accepted the special needs school suggested by us was the right school for our son. Despite all this, the individuals who were obviously covering their backsides, protecting their jobs and justifying their positions, still did not accept it. They appealled on 1 word in the summary and we were on our way to the High Court with Barrister fees etc.. etc..
We were one of the lucky ones, we managed to get a meeting with the Head and the chairman of the education department, both of whom when we told them the facts had their heads in their hands as they only had reports from their subordinates and did not know the truth of the matter.
There are people who care and there are people who listen.
Obviously Lord Addonis needs to wake up and become one of these people.
The fact is there are conflicts of interest with LEA's and specifically within LEA's.
The sooner this changes, the better!
(message 80 ) At 06:04 PM on 10 May 2007, Sue Gerrard wrote: Sorry I can't suggest anything for Cheryle Howard (message 76) but as far as I know, Lord Adonis isn't, nor has ever been, an MP. Please correct me if I'm
please accept my apology i meant to write Lord Adonis instead of MP
It has been and continues to be a long drawn battle and i forgot who i was refering to
hope i have not offended anyone
This has certainly stirred up A major Metamorphosis of tadpoles into active singing froglets!
;-)
ed
(Re:message 96). Please accept MY apologies Cheryle. I wasn't complaining about what you had written. I was complaining about the system. I have major reservations about non-elected government ministers because a) they don't have constituents to keep them grounded and b) you can't vote them out.
Although I missed the interview with Lord A, I feel that I've gleaned enough from reading all the accounts to say how reassuring it is that so many people are 'on the case'. Such moving accounts backed up by immense professional expertise !
It would certainly be a good idea to keep the presssure on with a follow -up,don't you think?
It's obviously a huge issue which won't go away.
Nor should it.
Mollyxx
Nearly all the messages above illustrate very clearly why the process of assessment of children鈥檚 special educational needs should not be carried out by the body responsible for meeting them. Every trick in the book is being used by LEAs to avoid, if possible, identifying those needs and if not possible, then to delay their identification for as long as possible. Health also plays this game: one message here says their local speech therapy service is refusing to quantify and specify the provision their child needs. This is against the law: they are explicitly required by the 2001 Code of Practice and the Guidance Notes for Professionals in the writing of Statements to be specific; we had the same problem of refusal to quantify speech and language therapy provision in our area until the head of the service received a solicitor鈥檚 letter. (I fear to discover that they have slipped back into their old ways again, now the heat is off.)
Assessment shouldn鈥檛 be a one-off event, to be carried out before the initial Statement is drafted, but there needs to be sufficient professional time to do this. I worked out that Educational Psychology time was about 20 minutes a year per pupil (to include attendance at meetings and report writing) at one special school. Teenagers have Statements that are substantially unchanged from when they were nursery age. LEAs don鈥檛 like to amend Statements following Annual Review because that opens up the possibility of appeal to Tribunal during the two months after the new Statement is issued.
The Regional Partnership Boards receive central government funding to enable regional groups of LEAs to share good practice concerning children with special educational needs. From what I have read, there is no evidence that my local Board is using this money to improve the processes of identification and assessment of children鈥檚 SEN at a young age. There is strong evidence they are spending money on improving the LEAs鈥 chances of winning at Tribunal. I tried to get more information about what was discussed at meetings only, after a chain of correspondence, to be told they no longer took minutes of meetings! I wonder why?
I am an independent chartered educational psychologist but I previously worked for many years for Local Authorities in East Anglia and in the South West of England.
One of the reasons that I became a totally independent educational psychologist was the constrained and compromised position within which I sometimes found myself working. I wanted to have the freedom to state clearly and specifically what an individual child requires to meet their needs without regard to the resources the authority might have available.
The decison whether to carry out a statutory assessment of a child s based on criteria but these vary from one LEA to another depending upon the level of resources available within that authority. The post code lotteries that exist within the health service are as nothing compared to those that exist within education - a fact of which Lord Adonis mucst be only too aware.
The legislation states that a statutory assessment should be carried out and a statement issued where a child has needs that cannot be met fromt the provision that is normally available within a mainstream school. No criteria for what should "normally be available" even at the basic level of how much money a Local Authority should spend per child have ever been established by this or any other Government - the historical disparities between the educational spending of different local authorities are so great that bringing all Local Authorities up to the best would be prohibitively expensive.
As a rsult, parents in one Local Authority can find that they have very little chance of getting a statutory assessment of their child and that even if they do there are very limited options in terms of the provison available while those in the neighbouring authority have a much wider range of provision available and a better chance of obtaineing a statement. For example, the expertise and provison available within Cornwall differs markedly from that available within neighbouring Plymouth.
Most professionals employed by local Authorities try to be fair and try to do a professional job in difficult circumstances but are put in an impossible position. They are of course constrained be the resources available to them. As in the Health Service there is a system of rationing but this will always have to be the case while resourses are finite and resources will always be finite. The dishonesty is in not admitting this and in not making the system transparent and equitable across the country.
I know of many local authority colleagues who are not happy with the way the current system works but who are constrained in what they can do or say, not because they fear losing their jobs but on a day to day basis they have to work with administrative colleagues who have to make the system work because it is the only systme that is there.
I also have expereince of appearing at tribunals both as a local authority psychologist and as as an independent psychologist. I know that parents who can afford legal representation and theri own 'experts' have a far higher probability of obtaining the provision their child needs than those who don not. Therefore for Lord Adonis to state that tribunals are "free" is at the very least disingenuous. The House of Commons Select Committee in its report last year said that the system was "no longer fit for purpose" a statement with which I and many of my colleagues, not as free to state their views as I am, would heartily concur.
In case anyone hasn't seen it, there's an interesting LEA persepctive on the "more on Lord Adonis" thread by Simon Vilette (no 26).
I sent this out recently as an email to try and highlight the suffering of children with Aspergers and HFA that still goes on in mainstream schools, and someone suggested I put it on your page, (which I was not aware of before):
I do not represent any organisation in this (my)opinion.
I am writing as the parent of a child (now 19) with Asperger Syndrome, but also as someone who has met many such children, Aspie adults, and their parents / carers over the years.
Aspie adults will tell you about their horror stories in our education syspem. The problem is - it's still going on.
I am writing as someone who cannot come to terms with the ongoing social injustice / cruelty / mental child abuse that goes on in our education system.
Please see my email to the NSPCC below.
Thanks.
Dear NSPCC,
How do you define mental child abuse?
If you met a child of 8 who was confused, suicidal, and isolated, what questions would you ask yourself?
What if it were the result of a child being forced and kept for years in a totally unsuitable environment, which resulted in them feeling high anxiety, having regular panic attacks, and exhibiting other unusual behaviours, and aggrevating an existing known disability?
What if this were widespread in the UK and known to all the authorities concerned, but nothing was being done about it?
What if this environment was set up and defined and maintained by our government and local education authorities? What if - when parents brought this to the attention of the authorities concerned, complained or tried to change things, they were then themselves blamed or censured?
Well, this kind of mental child abuse is widespread across the UK and goes on every single day.
Far from government or LEAs holding up their arms and denouncing the daily mental cruelty involved and human rights being violated, and doing something to right this wrong, they blame the parents. Parents are forced to fight for every little thing. It makes every waking moment a nightmare for child and parents / carer / family alike.
Many children with Asperger Syndrome or High Functioning Autism threaten to commit suicide from the age of around eight or so onwards. There are many of our children who are out there, unhappy confused and lonely, at this very moment, and government and LEAs won't do anything about it. Families suffer breakdown because of the stress and the immensely damaging effects on their lives.
Who cares enough to do anything about it?
We are talking here about CHILDREN from as young as 8, across the UK. We are talking every single day.
These children find it hard to communicate, (which is part of their condition / disability) and cannot express this to you themselves.
Hidden disability is easily denied because the suffering is internal. "Guest mode" also confuses the issue.
This suits the money-saving agendas of thise in authority - who should be ashamed of themselves for putting money above the suffering of - often very young - children.
I read somewhere the other day, (I think it was on the NHS info service on SKY,) that a child threatening suicide amongst the Asperger or HFA community is taken almost as one of many symptoms of AS, and not as an indication that a young child, an individual person, a human being, is actually suffering needlessly, because they are placed in a situation that is unbearable for them, they are getting no suitable support and are, understandably, as any human being under those circumstances would - reacting.
When children with AS or HFA are placed in mainstream schools, with little understanding or support, they are often confused, isolated, and become as a result of these, plus sensory overload = suicidal.
Because they are basically very anxious in any case, the pressure and stress of being in mainstream school aggrevates their underlying anxiety, fears and phobias and sensitivities (they are prone to sensory overload) and actually exaggerates / brings out the "autistic" behaviours that they and their parents are then often blamed for.
They are being treated / blamed as if they have behavioural problems, as if they are at fault, as if it's deliberate behaviour, but these behavioural problems are often the result of being placed in mainstream schools with no support.
Children and adults with AS do not fit into any handy category, re mental health, or mental disability, as often they are bright. This argument is used against them - "ahh but they are bright"!!! Bright but suffering terrible stresses, unimaginable to the outsider, and which because of their social and communicstion difficulties they often cannot tell you about.
They probably don't even know you need to know. They have problems with theory of mind, with empathy.
Silent but immense everyday suffering.
Please would you let me know where the NSPCC stands on this?
I feel that the education system in the UK ("Inclusion" - shoving everybody into mainstream with little support or regard for their human rights) subjects AS children to institutionalised mental abuse, and then, unhelpfully to say the least, judges the child and parents negatively for what happens - the reactive / additional autistic behaviours.
A lot of this institutionalised mental child abuse arises from ignorance in the first instance, but the government and LEAs must know full well by now how children with Aspergers & their families are affected - from the information / feedback from the many tribunals that parents have to go through, and from all the forms that parents have to fill in, via schools to LEA special needs teams.
LEAs and government ministers etc collude to maintain this cruel system in order to save their own jobs and to save money.
Yet, in my opinion, because many of our children are suicidal as a result of being forced into mainstream schools, and not getting the support they need - in fact many services have actually been axed - it amounts to institutionalised, knowing, mental child abuse, and violation of basic human (child) rights.
If an institution is wilfully and knowingly perpetrating such abuse, can they be prosecuted or sued?
Please would you let me have your official thoughts / policy on this.
Yours sincerely,
Pat Smith
I have been in local and national papers. I am a parent of five children. George one of my sons has complex special needs. He attends Brent knoll special school in the borough of lewisham. We have been actively campaigning to keep the primary provision of the school open. Lewisham education authority have given us one option therefore giving us no choice. They have been implementing there preferrred option some 7 months before any consultation process was discussed. Our school has lost funding for 7 pupils which amounts to 拢70,000 and by coincidence a mainstream primary that has a unit has recieved 拢70,000. This mainstream school has ten places for children with SEN yet only 6 have been filled.
Parents do not have confidence or trust in the mainstream schools. 97% of parents at our school voted against closing the primary. Lord Adonis stated that parental choice is paramount, parents should have a choice and better provision has to be in place before any provision or school is closed. Well there is no better provision in the borough or surrounding boroughs, The parents are not being listened to, We are not being given a choice and there is only one proposal on the table.
We are told by the experts that early intervention is crucial if a child is to stand a chance of maximizing his/her emotional,academic and social potential. In which case why is Lewisham authority hell-bent on axing one of the most brilliant primary provisions around. The school serves as an amazing outreach facility to over 25 schools.
This education authority knows the cost of everything and the value of nothing!
I would love to have some feedback from Lord Adonis.
I have organised a March and Lobby on Wednesday 23rd May from 6pm. This will be from Lewisham Hospital to the civic suite in Catford. This march is to defend education for everyone. You are all very welcome to attend.
I am an Educational Psychologist specialising in autism and I have supported many hundreds of families through the tribunal process. The system is, as the Education Select Committee noted 'not fit for purpose' as the LEAs have no vested interest in supporting the needs of the children but rather prefer to look after their budgets. They have an irreconcilable conflict as they are both commissioners and providers of special education and Lord Adonis is merely washing his hands of a system in crisis by pretending there is no problem. It is sad that our politicians no longer have the desire to support the most vulnerable people in our society but would rather hide behind easy platitudes instead of actually listening to the people that the system actually affects - children with special educational needs and their families!!
I am a parent of a child with speciaal needs and SEN governor at her school. I am very highly educated and articulate and, as one might say, well contacted with people who pull strings. I have set myself the task of finding out what statutory obligations for SEN children are for ur school, however I detect a serious need for open debate about the situation at point of delivery. As I delve I find just about every child with a statement is not getting everything he or she should in this relatively affluent and very good school. However, dare I suggest to people in responsible positions in the LEA I must prepare myself for excuses, rationalisations, deviations and vague promises. I have challenged some of them with their stautory obligations after they have described something they have said that is not akin to the truth. The outcome is usually a defensive withdrawal into explanation of lacking funding and resources. Lord Adonis and his like simply do not know what is happening at point of delivery, nor does their attitude imply that they particularly care. So yes, everybody appears to be washing hands rather than rolling up sleeves and getting down to providing. The inarticulate and weak members of society who do not know how to go out and demand what their children are supposedly entitled to have absolutely no chance and one might suspect that that is exactly what is intended. It is so shameful in a country where both leading parties say so much about social justice, but then our SEN children are only one of too many groups who are being let down. Of course, this leads on to the fact that when these children end educatin they pas on into other neglected groups who will be cajolled into low paid, menial work because they lack the qualifications for better they might have achieved with the support they are entitled to. The circle never ends...
I'd just like to point out that Tribunals are not all bad (in retrospect). At our first one, the LEA gave in after 2 minutes (we had refused their last minute 'compromise' a couple of days before). We then got to listen to the chair berating them at length about the waste of time, money and resources they had put everyone through on cases that they knew they would lose.
At our second one, the LEA knew they would lose so their representatives decided to go 'on holiday', leaving the case to an underling who knew nothing about the case until the morning of the Tribunal! I will never forget the look of open-mouthed horror on everyone's face when she admitted that the LEA's admissions policy had been specifically designed to break the law for Special Needs children. Obviously we won that one as well, and the LEA were ordered to change the policy so that it obeyed the law. We heard later that the Chair was furious, but not surprised, when the LEA wrote to him, asking for the decision to be revoked as complying with the law would cost them more.
It appears that budgetary concerns are all-important to LEA's and that any claim that "every child matters" is simply a charter for lies, delays, threats and law-breaking on a nationwide scale. As parents of SEN children we all know this, but it is time the rest of the population were made aware.
How can this man talk about 'a complex system' on this radio programme ..... Does he have any understanding whatsoever of what the word 'complex' really means ? How about starting off with 'the complex' challenges of having a child with special educational needs .... does he have any understanding at all about this... It appears not.
It is complete and utter rubbish to try to justify what is happening. I have listened time and time again to these comments (from 'the powers that be') who clearly have no idea whatsoever what it's like to be a parent of a child with special educational needs.
Why oh why should these parents be subjected to this - it shows the value which is placed on our special children against that which is placed on 'financial burden' by the LEA's / Government.....
I apologise if this note comes across as one written by an angry and frustrated' parent. I am sure, however, if my child were in a position to express his feelings about our system, he would probably say the very same ! Sadly he cannot do so..... he is autistic. So take this as a letter from my little boy..... (not I am sure that this will make the slightest bit of difference to Lord Adonis !) and please please try to consider carefully the comments made on this subject by so many good and kind people, who simply only want what is best for their children.
The alleged statistics are 1 in 400 reaches tribunal.
I wonder if Lord Adonis can give us the statistics for the amount of cases that get within 7 days of that tribunal (or in our case one) before the LEA backs down.
The advantage to the LEA is obvious. By stalling even the assessment of a child with severe SEN, they are saving a huge amount of money per week until the tribunal date is close. Who cares what it does to the child, when they're saving thousands of pounds from their budget for no cost to themselves.
The entire system is corrupt. Yes, every child matters - but not to the LEA.
I have a son aged 9 with Autistic spectrum disorder , Dyspraxia, Speech and language delay and ALD. Lord Adonis what qualifications do you have!.......... to be able to tell us what is best for our children . you can only know what is truley best for them, if you live and breath special needs, on a daily basis.
Parents and carers are the most valuable source of knowledge , yet we are not listened to and constantly ill treated. Why would any parent of SEN children have faith in a system like this.You are denying our children their right to a FIT FOR PURPOSE EDUCATION.
As one of the parents featured on PM highlighting the plight of children with special needs, I wanted to express a big thank you to all bloggers who have contributed to this debate, and to thank PM, especially Yvonne Murray for her determination to try and hold this Government to account for its treatment of disabled and special needs children.
I hope that PM will now as a result of the response it has received continue to pursue politicians and accept they rather than the unpalatable truth, they much prefer to say what it thinks the public wishes to hear about how children with special needs are treated as opposed to the cold reality, which is it turns a blind eye.
I just wanted to add, what does Lord Adonis have to say to the two teenage boys I know of (one Asperger, the other had an original diagnosis of Semantic Pragmatic Disorder, later updated to High Functioning Autism) who while in mainstream school tried to take their own lives, one threw himself from a school window, the other drank weedkiller.
Lord Adonis, what do you say to our children suffering unsupported in mainstream?
Have read people's comments with much interest. And they all confirm what we at SOS! Special Educational Needs (SOS!SEN) have experienced over the last few years. The refusal by LEAs to provide the right support and/or a suitable educational setting for children with special educational needs is appalling. At SOS!SEN we provide free help and guidance for parents through our Helpline: 020 8538 3731. We also run Workshops to help people understand the Practicalities of SEN: from School Action to SENDIST - the next one is next weekend 19/20 May. Find out more about this by emailing SOSSEN@blueyonder.co.uk or call the Helpline (or leave a message) to find out more.
I recall Lord Adonis's interview during the week, and how I sat in my car outside my eight year old son's school staring in disbelief at the radio, practically banging my head against the steering wheel!
This issue with a conflict of issues within LEA special needs assessment/funding is happening too, in the US. I recently came across this article: www.wrightslaw.com/advoc/articles/ALESSI1.html
I am one of these (if you like) lower class parents who did not have the means or knowledge to approach this problem. I am a single mother, until last month living on one of the most poorest of council estates in the country.
My son has been having trouble since starting school four years ago. He apparently displayed all of the symptoms of ADD, however when I suggested that this was the cause of his symptoms the teachers closed down - they even stopped reporting his problems to me.
I met with the Educational Psychologist at the school (after I wrote to the Head in complaint), and they refused to even consider getting him formally assessed. (I am beginning to understand why now.)
Luckily for my son and I, an ADD assessment can be arranged for free through the NHS, so this is what occurred.
After confirmation by two NHS specialists I was informed that unless I agreed to medicate him they would not 'formally diagnose', (yet another issue). I refused to medicate him as he did not display the hyperactive qualities usually associated with this condition. I attended specialist parenting classes and continued to beg the school for more support.
The school, after much pressure from me, and one of the NHS specialists agreed to place my son on a special educational plan "but only to tackle his behavioural issues".
My point is, not at any stage was I treated with any credibility, I did not know about how the LEA are 'supposed' to help in cases such as these, and I was made to feel like it was my fault that my son cannot behave 'normally' in school. How can Lord Adonis say that the majority of parents are happy with what they are 'provided with' if the majority of parents don't even know it is there (supposedly) - his evidence is unreliable.
I have complained about the system and have a letter to our MP, copy sent to me, signed by Ruth Kelly, before she opted out with her own child. 'There will, of course, always be some parents who are unhappy about the support being provided for their children. However there are many more who are content with the provision being made.' We, who are unhappy are, of course, that element of society known as 'difficult parents'.
I am not only a parent but also a SENCO, many parents do not have the finances to fight Tribunal, nor the knowledge of what should and could be made available. It is so sad for the children. I will support anyone who chooses to fight but it is career suicide for me, what choice do I have?
As a parent advocate working with SOS!SEN Helpline, working closely with families, writing documents in preparation for Tribunal, and representing at Tribunal I have a rather different view on the reasons why local authorities let down children with Special Educational Needs so badly Yes, the lack of resources explains much but there is something else and something more sinister 鈥 the psychological enjoyment and exercise of power by local government officers who know they have the information 鈥渆dge鈥 over vulnerable parents and their children.
Those in national and local government who are elected or appointed have their positions, and their careers to protect or advance and, whether Lord Adonis mouthing inaccuracies or the SEN officer for borough X doing the same thing, both know that most of the time they can get away with inaccuracies because they are 鈥渋n power鈥. Lord Adonis may appear not to listen or to understand. Believe me he does. However, if he admits he does really listen and understand he may have to act upon the evidence 鈥 and that could weaken his own position of power. He chooses, therefore, 鈥減olitician speak鈥. Your local SEN officers may appear not to listen or understand. Believe me they do. However, they want to preserve their positions of power too. Power for them does not come from taking commonsense decisions upon what a child needs, or acting now to avoid much greater expenditure in the long term. It comes through the 鈥渂rownie points鈥 gained by being seen by the elected 鈥渂osses鈥 to save money in the current budget. The officers know that conformity pays 鈥 delaying tactics, weasel words, unlawful Statements of SEN, backdoor reductions in provision on a Statement, seeking adjournments at Tribunal on the day so that parents have double fees to pay to witnesses鈥︹︹︹︹.no need to go on.
I have recently come across a newly appointed SEN officer who has replaced two disastrous and status crazed predecessors. This one does listen, treats parents like human beings, accepts the value of evidence provided and is prepared to stand up against the infamous SEN Panel for what each child needs. (Don鈥檛 all rush to ask me which authority 鈥 that officer will either leave or conform I fear!). I am sure that in the long term that approach could cost the local council much less than that of the previous conformist creatures and could force a real understanding of what is needed by way of provision.
Finally, Lord Adonis, I am sure you know that Tribunal costs a great deal of money if parents are to have an even chance of winning 鈥 local authority reports often recommend only what the services wants to provide. Assessments by independent professionals cost hundreds or even thousands. Worse still, Legal Aid has now virtually been banished by government action, leaving the poor even more powerless and the authorities overjoyed. If you don鈥檛 believe the parents, Lord Adonis, do please contact SOS!SEN 020 8538 3731 and we can give you several examples of costs and, perhaps even try to arrange for you to go as a family supporter to SENDIST and see for yourself (incognito, of course!)
Hi Everyone
I have read the comments regarding SEN statementing and the appeals process with great interest. Below is an excerpt from my 大象传媒 action site regarding education for my daughter. I wrote to Lord Adonis Tony Blair and my local MP none of them bothered to reply.
my 12 year old daughter, Jodie, who was born 13 weeks prematurely. Jodie is disabled and has Cerebral Palsy, Hydrocephalus and Epilepsy.
As Jodie reached her 5th birthday, I was looking for a school for her to attend. At that time, Barnsley Local Education Authority were in the process of closing all the special schools in Barnsley, in favour of one single big school, Greenacres. Despite 5 visits to this school, I knew it was not suitable for Jodie. With no other options available to us, I placed Jodie in a mainstream school, Barugh Green Junior & Infants. Although this school and its staff were very good to Jodie, she was held in the Reception class until she reached the leaving age of 11 because the school and the LEA felt that Jodie couldn't follow the National Curriculum
Jodie was very happy at Barugh Green and enjoyed her time there. At this point, that's all I really hoped for, a place where she was happy, as I accepted that Jodie wouldn鈥檛 be able to follow the National Curriculum. However, aged 11 Jodie had to leave this school and I was faced with the same problem of finding her a suitable special school. I was told by the LEA that I had to find one for her myself, so I set about doing this.
After some research, I found a special school called Paces in High Green, Sheffield. Paces is a school that teaches Conductive Education. I must admit I didn't know much about Conductive Education at this point 鈥 however, I went and spent time at the school and was very impressed and could foresee real benefits for my daughter. Only children with Cerebral Palsy are eligible to attend and therefore it is ideal for Jodie and for her development. As Barnsley LEA refused to fund her place, I went to a SENDIS tribunal (Special Educational Needs Disability and Inclusion Service) - but unfortunately we lost. However Jodie was offered a bursary for one year and has been attending Paces school since September 2004.
Thanks to the dedicated focus that Jodie receives at Paces, her progress and development have been more than I could have ever hoped for. She is a different child now, showing visible improvements in both her overall behaviour and her mobility. At the end of the year I had Jodie assessed by a Mr Mike Davies who is an educational consultant and neuropsychologist. His report stated that Jodie should be disapplied from the National Curriculum as she would gain no benefit from it - it would go straight over her head. After visiting both schools he also stated in his report that he felt that Greenacres School was not suitable for her, and that to move her from Paces would be detrimental to her continued improvement and that she would regress as a result of this.
Encouraged by the findings from Mr Davies鈥檚 report, I went back to the SENDIS tribunal feeling very positive. On my arrival, I was met by my barrister who advised me that we were extremely likely to lose again as all three panellists were very pro LEA - this was before we even went into the tribunal. Sadly, he was right - we lost again. Despite the fact that we had video evidence of Jodie's progress at the school, two of the teachers giving personal testimony and evidence AND the psychologist鈥檚 reports, all these factors were ignored. It was as if the decision had been made before we even entered the room. I was truly devastated.
Jodie can now attend Paces school only until July 2006 and then I must raise the money to enable Jodie to stay there. My only other option is send her to Greenacres School, an option that I just cannot consider. I have had to fight for so many things for Jodie, even to get her a decent wheelchair and now I have to fight the LEA for a place at a school where she can really achieve something and not just be a number. It鈥檚 a fight I will willingly undertake to give my daughter a real opportunity to shoot for the stars in her own way and continue to develop towards her full potential.
Jodie has already been through so much in her short life. She has had over 40 major operations and is due to have another on the 20th February. Despite all of these challenges, she is such a little fighter and battles through it all with her usual cheerful smile, which inspires me to fight for her no matter what.
In order to try and raise the money to keep her at Paces, we are now organising some fundraising events. 大象传媒 Look-North filmed our story yesterday and this was shown on Monday 13th February. The Barnsley Star published an article on Tuesday 14th February and The Barnsley Chronicle are publishing Jodie鈥檚 story in this next week鈥檚 edition. We are trying everything we can think of to bring attention to Jodie鈥檚 story and would be very grateful for any help.
The whole system is a complete joke. SEN children are deprived of the right of fair assessments due to therapists being told what they can and cannot provide due to finances, not need. My little boy was deprived of education and we were forced to spend our savings on obtaining assessments and legal fees for a tribunal that was awarded in our favour. We could not have achieved this without the expense involved. The tribunal system is a farce and allows the local education authorities to do as they wish with regards to the procedure, whilst parents have to stick to the rules set down. Even then we had to go back to using our solicitor to force the education authority to provide what was awarded at the tribunal. The education authorities can do as they wish, with no penalty for not delivering. Only a few months after the tribunal the school have now said they no longer want our child at the school. The local education authority is now trying to shoehorn our child into a school for children with profound difficulties due to a test that was collated incorrectly and it will once again cost me money to challenge this. Children are suffering as a result of an inadequate system and ill informed parents like myself are being fobbed off with poor assessments carried out by people worried about budgets. The system is in meltdown. I know my rights and will keep challenging, but many cannot or do not have the ability, time or finances to do this. We all want the best for our children, I do not think it is too much to ask for a good education, but somehow doubt this will ever happen fairly or easily for SEN children. It is short sighted for anyone not to provide a proper education for our SEN children, but sadly no one appears to be looking at the longterm gains and no one in a position to give our children a chance appears to be listening and making the changes.
Our children's memories of their education should be a happy one where they all feel they can blossom through these years regardless of any learningdifficulty/disorder knowing that they and their families are being supported by teachers/education professionals who have been given sufficient funding for specialized training and guidance so that they can understand each individual child whatever the challenge. We are at present trying to move or son from mainstream primary to a special school environment because he cannot cope with the anxieties that occur due to a busy changing bustling mainstream school and lack of teacher understanding. Trying to get a Statement is stressful and adds to more anxieties and when you think that you have acheived this piece of paperwork you are only just starting on the next battle to win!! A decision to move our child is based just on a panel of people who sit round a table and ignore reports from hospitals who state our son must be moved to a special school. The decision not to move our son to a special school even though he has been offered a place by that school is based upon a cognitive test done over a 20 session!! If your child is classed as an odity as ours was you do not fit into Counties criteria, you are placed in a category and your mental state is ignored!!
My son will not be able to walk into society with confidence and his self esteen intact if he does not get the help he is entitled to now - he is only 8 yrs old and already has 4 different disorders including Tourettes Syndrome which is worsening daily. We have instructed a solicitor to start the Appeal process for Tribunal and yes we have been told that this will cost thousands - my eldery mother is using her long term savings which would pay for her nursing because we would not be able to fight and get our son helped due to lack of funds!!
What is this future society coming too????
I stupidly once believed the SENDIST video and went to Tribunal without expert and legal help and guess what... lost. Thanks to a special person who volunteered to help me the decison was reviewed and my son now attends a special boarding school. I have recently won a special school for my daughter who is only 7, because there is no provision she has to board to receive an appropriate education. The whole SENDIST process took 15 months and 4 hearings, and that was after her out of school for a year because she was being physically restrained without my knowledge and taught by nursery nurses. I asked to meet Lord Adonis so he could see my daughter experiences, but for some reason he didn't want to meet me. Of course Tribunals are going to cost both financially and emotionally - why doesn't Lord Adonis attend just one Tribunal and find out for himself what it involves and costs?
I am the mother of a severely dyslexic son but also a primary headteacher. I have views from both sides of the fence and neither is positive or encouraging!
Despite my knowledge of the sytem and experience of applying for statements for pupils I was told by the SEN caseworker of my authority my son would not get a statement for dyslexia! I had no idea that the clerks were now taking decisions on funding!!??
We moved house and into a neighbouring authority who are, I have found, even more difficult to deal with. I was given misleading and indeed incorrect information several times which went against the Code of Practice. Without my knowledge of the system and pure determination for our son's right to the appropriate provision and backup of family I am sure we would have given up.
After 18 months, 拢20,000 and a huge amount of distress the authority gave in a week before the tribunal, once the new financial year had started! Our son is now succeeding in education for the first time in 11 years and most importasnt of all is happy and pleased with himself.
Lord Adonis' comments left me speechless, which I can only assure you is an unusual occurence!
This issue cannot be allowed to fail for the sake of all those children and parents who cannot get through the system.
I work as a teacher in a mainstream school. I agree with almost everything that has been posted on this site already. The situation makes mey angry and sad in equal measure. I have contacted my union, my M.P., Alan Johnson and others to voice my dismay at the way we are failing our childen with special needs. Is there any organisation I can join in order to attempt to change the government's policy?
It is great to see other teachers on the blog who are also angered by the system. We should certainly be getting together to fight an iniquitous system What hope is there when, in our area for instance a 'looked after' child cannot be referred to speech and language because being 'looked after' is one of the criteria for children who should not be referred?
I , like Kate Dadd, fought, paid thousands and won through SENDIST. There are many many children who are in even more vulnerable positions because their parents do not have the money to fight and yes, they do need money for reports and, usually, representation. The LEA pulls out barristers whenever it feels like it.
I have even had a prinicipal special needs officer tell me I was on 'their side now' because I am now being employed in an LEA school rather than fighting for my child. So much for all the professionals being on the side of the child.
I agree with Marion Strudwick, those in power know exactly what is going on. Most like their jobs, want to preserve their status quo and won't speak out, others are working with passionately held theories about inclusion (also, of cours, an amazingly cheap option!)but preferring to ignore the reality. They know what the reality is because they run training courses for teachers doing the jobs, I have heard plenty of complaints about what is really going on in schools. Speaking out is incredibly difficult for teachers but more should come out. Ann Bauer
I think the only way forward is for some coordination and public representation of the strength of views displayed here.
Making our points piecemeal has clearly not had enough impact. Perhaps PM could be part of the creation of this positive move for change for our children.
Hello Kate and Ann
I was one of the parents whose story was covered by PM and I represent parents in Tribunal voluntary.
If you could e-mail me at juliemaynard at aol dot com
I think I will be able to help.
Hi ....
I am blown away by all these comments. I did not hear this dozy politician talk and wish I had been a part of the interview.
I am a parent of a 10yr old little girl who has quadriplegic spastic cerebral palsy with associated complex learning difficulties and emotional and behavioural issues.
My husband and I are about to take on our LEA and appeal against their decision to place our little girl in a wholely inappropriate secondary school against our wishes and after having a meeting with our Head of SEN to explain our reasons why. We have taken advice from SOSSEN (Marion comment114) which has been the best we could have wished for and have found through them excellent solicitors and ind ed pysch for the first round of the battle.
We as a family are being put under unneccessary financial and emotional pressure and above all are having to put our little girl in situations that cause her high anxiety and stress because she has to be independently assessed by people she doesnt know for long periods of time in a highly formal and testing environment.
What happenend to 'Every(disabled) child matters'...'eductaion education education' and SCOPES 'Time to get Equal'....!!!! Doesnt bode well does it...
Lord Adonis.......wake up...why dont you come back down to earth and see whats going on...sit in on our tribunal....meet with our LEA and get back to basics...our children have to fight all their lives for everything they need....Somethings neednt be this difficult...all we ask is the right learning environment that will enable our children to meet their full potential...your comments are disgraceful
Amazing! My experience in using the SOS! Special Educational Needs (SOS!SEN) Helpline proves that all of what is being said is so true. 1 in 400? Rubbish! Lord Adonis may be right with the actual figures. But that's probably only because parents just don't know what to do and believe that their LEA is doing the best for their child. But that distorts the reality. Believe me: there are many parents who need help but don't know where to turn. Marion Strudwick is absolutely right: Get Lord Adonis to sit in and observe a typical Special Needs Tribunal and he will see the reality.
Virtually every message here is from someone who as a parent has been fighting individual battles with their LEAs, or who has very useful experience and knowledge gained from working within the system. LEAs use central government money through the Regional Partnerships to share knowledge and experience - to defeat us and deny our children the education to which they are legally entitled, it would seem. Is there some way we could get together to shine a light inside the LEAs with the aims of publicising the present situation and eliminating bad and illegal practice from the system?
I worked for 4 years on a SEN Helpline. I listened to hundreds of parents, tell me of the battles they had to get their child's SEN met; just like all the others above. I have also watched countless other parents I know personally, suffer stress to themselves, their marriage, their other children and their work/careers, while fighting for their children to get the education to which they are legally entitled.
I agree with the comments above by Pat Smith that "inclusion" for some children is institutionalised child abuse. That was my husband's exact comment, after attending our daughter's Year 5 annual review, while they discussed her mainstream integration in the afternoons, contrary to our wishes and hers. None of the so-called "professionals" ever asked HER how she felt about it or whether she could cope with it. It was imposed on her, through an ideological commitment. (I often wondered why those people worked with children, when they had no empathy or compassion for them whatsoever)
Our daughter has told us subsequently that her life at that time was "torture" and she was suicidal. Not only that, her twin sister developed anorexia, which took a year of child psychotherapy to shift.
How much does all this cost the NHS in terms of stress-related mental and/or physical illness, not just for the children but the parents?
Lord Adonis is right in that appealing to the Tribunal is free, but nobody can go to a Court without any evidence and that costs the money, with or without legal representation!
My husband and I appealed three times to the Tribunal over our daughter at a cost to us, in total of 拢17,000 to get her SEN met. We also had to initiate High Court action (at a cost to the taxpayers) after the first two Tribunals in an attempt to get the LEA to make the provisions in the statement, as ordered by the Tribunal. The second time, the LEA removed the specific provisions from the statement, thereby manipulating the High Court action and leaving us no other remedy, than to appeal to the Tribunal again! Fortunately, the third time, the LEA backed down and gave us the residential special school, everybody knew our daughter needed - she is now the happiest she has been, ever since she entered full time education.
I agree with Marion Strudwick that Lord Adonis must know exactly what goes on. After all, I know of numerous parents, who have complained to the DfES - but the DfES does nothing but slap LEAs on the wrist. There is no effective policing of the system, other than by individual sets of parents, appealing to the Courts, Local Government Ombudsman.
The bottom line is they have put in place a system, they don't want to afford! The tacit attitude is that these children are second class citizens.
Having read the comments above, including those of my wife, it seems that the most charitable slant that can be put on Lord Adonis' comments (which I confess I did not hear) is that he must be too remote from the SEN "coalface" to understand the issues and the reality faced by parents and their vulnerable children.
Might I suggest two possible remedies?
1. Would the 大象传媒 be so kind as to invite Lord Adonis to a one hour televised question and answer style debate with the people who have posted here and other interested parents? That would enable him to gain an understanding of the issues and depth of feelings; or, perhaps would give him the opportunity to demonstrate his overriding wisdom in this area.
2. Failing that, perhaps he should do the decent thing and resign?
I can't agree more with David Lyons (127) and other contributors who think the 大象传媒 is ideally placed to take this issue forward. One heartening feature of the debate that's resulted from the Andrew Adonis interview is the contributions from people who don't themselves have children with SEN, such as teachers and LEA employees. Most parents simply don't have time to co-ordinate an effective campaign since we are preoccupied with supporting our children, dealing with problems caused by the education system and corresponding with schools, LEAs and solicitors. I would be so grateful if PM could push for a meet-the-parents session with Lord Adonis.
Trying to get a diagnosis is very very difficult , especially if it is a hidden disability such as Aspergers. If it is hidden, it is DENIABLE by LEAs etc. Believe me they do deny, lie, withold information, put the blame on parents etc. No holds barred in this fight to save money. They are often unscrupulous and indifferent.
They say "We do not want to LABEL your child". Trying to make parents feel awful. (Subtext - we want to save money) It is not a label it is a handle on something that needs to be dealt with using common language and terms, because hidden disability is hard to describe. Parents need to know what they are dealing with and how best to help.
Diagnosis is crucial for the child's self knowledge, and state of mental health. They need to know they are not alone in encountering constant rejection from their peers, and it is not their fault - it is due to a social and communication difficulty / lack of empathy which is not being supported. They should not have to feel like bad / horrible people.
Our education system damages our fragile vulnerable children. Should an education system be about damaging a child?
Our Aspie children say things like "I thought I was horrible" (either to look at or as a personality), or "I thought I was the only one". Their attempts at making friends feel forever fated, they feel isolated and different. To deny a diagnosis is cruel in itself. Children with AS need to meet others like themselves. Most face a similar experience of isolation, rejection etc in mainstream school. They face everyday reinforcement that they are different and isolated. Their reactive distressed behaviours / panic attacks are then blamed on them / their parents. This is soul destroying.
If a child with SENs is unsupported in school, for parents it means constant struggles re supporting them as best you can in the home, constant battles with the LEA, and trying to get a diagnosis = if your child refuses school you may become unable to work = financial hardship = housing problems, no social life, no holidays, no days out, sibling distress. Your situation & distress as a carer is cruelly compounded. Parents of children with SENs like this, are made to feel outside of society themselves, through no fault of their own.
How many parents here have been made to feel like a criminal, punished for having a child with SENs? How many have been threatened with legal action when their child could not cope in mianstream school and refused to go anymore?
How has the stress affected your and your child's mental health? When you went for counselling help via your GP, & got a referral to mental health unit, were you told to go away and pay for help yourself (even if on Carer's Allowance) as it was reactive stress / distress, and not chemical depression???
When the education years are over, the pressure is off somewhat, as we do not have to try and force our little lumps of gristle through the state education sausage machine.
Plus - please Lord Adonis, drop the word "Lord", it sticks in my throat.
I can only comment on the comments on Lord Adonis and his words, but its the same old story.
As an Adult with Aspergers who works for the National Autistic Society, its all very simple to me.
Lord Adonis is typical of most of the planet population, who have no knowledge of Autism. Simple as that. You hear the same comments made on them, you read/hear such people making the same wrong judgements.
There is a big gap between those in the know on these matters, be they 'special needs' or Autism.
All these exchanges on the list - which is now I note considerable - are invariably from people who DO know what they are talking about and have a personal, usually family, stake in the issues discussed.
So Lord Adonis, you were saying? I mean, you do know as much as all these people, dont you? Dont you?
I have just played the Wednesday PM programme back to my Mum, via Listen Again, and her eyes nearly popped out, her gasps of disbelief at what she was hearing coincided with my own at Lord Adonis' response.
He is not just "spin"ning, evading, misleading, denying, but blatantly LYING.
Lord Adonis your lies do not become you or this government. Your lies condemn our SEN children to years of misery. I cannot put it any less strongly. This IS the situation.
The situation is a national scandal, disgrace and tragedy.
Who cares enough to do anything NOW?
I can confirm the effects on parents. Just in my circle I know of: A mum who had an early heart attack, another who had an early stroke, a Dad who died of cancer, and other Mum with breast cancer, the rest of us have kept going despite being near the edge on far too many occasions than is good for us.
Despair, exhaustion, an almost paranoid state re how those in Authority treat us (we fear them, they are strong and lie to us and bully us, yet we have to fight them to get help for our children.)
The Mum of a child with SENs does her crying in the bath.
She cries not so much because her child has SENs, because she loves her child unconditionally and wants what is best for them, but she fears for her child's future in such an indifferent society. She just wants her child to be happy, but how can they be within this education system which is all geared up to competition, league tables, exam results.
& She cries because she can get no support for her child and feels like a failure - she is treated as a nuisance and troublesome mother by the school and LEA, (the spectre of bad parenting, lack of discipline and that old chestnut munschausens is always there). She cries because the inflexible education system makes her child stand out as different and not fitting in, she cries because there is only mainstream (Inclusion) or nothing - there is NOTHING else, no other suitable provision - she cries because she may have housing and financial problems, & her other children are suffering. She cries and feels oh so guilty for thinking about such a thing - because she has to take a job, any old job, which fits in with caring responsibilities - she watches her own career slide away from her.
And then we have to listen to stuffed shirts like Lord Adonis, who deny it all goes on.
I posted this on another thread last week, but I thought I might be useful to attach it to the main blog as well:
We are currently going through the seemingly endless process of trying to get our daughter's SSEN reassessed. She is 8, has severe autism and cannot communicate meaningfully at all, even with us.
As a result she is not making any significant progress at the special school she has attended for the last 4 years.
We are therefore trying to get the amount of speech and language therapy she is receiving increased, and have had a continuing battle with the local education authority - Sheffield Children and Young People's Directorate (Sheffield CYPD) - to quantify this in her SSEN. Their view is that unless the Speech and Language Therapist's advice recommends a specific amount they are unable to quantify in the SSEN, and we have been unable to get the Speech and Language Therapist to include such quantification in her written advice.
Following a meeting with the head of the Speech and Language Therapy unit involved the reason is becoming clear.
We were told during this meeting (only, we might add, having asked the question direct) that Sheffield CYPD have advised or instructed them (the local PCT Speech and Language Unit) NOT to quantify in their advice.
We can only assume that this is because if such quantification were commonplace Sheffield CYPD would be unable to meet the demands for speech and language therapy.
Surely, if this is indeed the case, rather than going to such devious and disingenuous lengths to deny desperately needy children the support that the law (see Children's Act) states that they are entitled to, the CYPD should be trying to help these children by insisting that additional funding be provided to enable them to offer appropriate support.
Although we have as yet no proof, we have no doubt that what we have been told is true, and it is probably safe to assume that similar measures are taken in many other areas. If so, the local education authorities are, as well as failing in their legal duties, taking the pressure off central government to provide proper and adequate funding for children with special educational needs.
Maybe this explains why Lord Adonis seemed so smugly ignorant?
LEA's are reluctant, in the extreme, to quantify provision in SSENs (see Hugo Ferguson's post, 135) as inclusion of specifics in the SSEN means that LEAs are legally obliged to deliver. Delivery costs money. Again, it's a question of budgets being more important than kids' life chances.
I do wish that we had a statesman rather than a politician as a Minister. Despite the mountains of evidence that the system is not working, he still has the same ideas that he put forward in the House of Commons debate, having rejected the findings in the SEN report by the select committee chaired by Barry Sheerman. Then, every speaker, Conservative, Liberal, and Labour spoke for the report, but he chose to ignore them all.
On PM, he chose to belittle the evidence of the parents, because there were only two of them. He chose to ignore the opinion of John Friel, probably the leading SEN barrister, just as he had previously ignored the evidence from the select committee, although they had done a really thorough job of collecting evidence. As Barry Sheerman remarked in his closing speech in the debate 鈥淭he Minister鈥檚 response bears all the hallmarks of having been written before he received the report鈥
If he thinks that the mothers who spoke were unrepresentative, he need only read this blog. He will probably choose to ignore it, but, if he genuinely wants a representative sample, SOS!SEN, the parent helpline can provide him with hundreds of similar cases!
His clever answer: 鈥淭here is no charge to go to SENDIST鈥, is technically correct. There is no fee, and in the early days, the parent鈥檚 views would have had weight. Unfortunately, na茂ve parents were no match for experienced LEA officers, with technical and legal advice, who knew how to play the system, and the parents lost.
Now, the SENDIST chair will ask for supporting evidence. So, you need experts, who have examined your child and also a representative who knows the law and the SEN Code of Practice to have any chance of winning. All this costs a great deal of money. Legal Aid is based on the parent鈥檚 earnings, and is anyway well short of the amount required.
Lord Adonis must know that a parent has to pay heavily to get satisfactory provision for their child at SENDIST!
I worked for IPSEA for many years, and am now one of their volunteer parent advisors.
I don鈥檛 think it would help to argue with Adonis, with or without PM鈥檚 help. He knows the score, but chooses to ignore!
Instead, I think an attempt should be made to organise ourselves (parents, concerned professionals, parent-advisors) around an agreed set of demands, to be put to the current government. If they fail to respond, then the agreed demands could be made the focus of a campaign when the next general election comes along. Someone commented that parents of children with sen are a very small proportion of the population, yet a 2% swing could scare politicians in quite a few seats 鈥 and kids have aunts, uncles, grans and grandads who might lend their vote for the kids, upping the swing!
Where we are now, as everyone on the list knows, is that the Select Committee has recommended a split in duties (to assess and to provide). If Adonis is to be believed, the government don鈥檛 want to be bothered with this, and in truth, it won鈥檛 remove all of the problems. There鈥檚 also a need for some amendments to the law, for example so that professional advice and statements would always have to quantify the amount of provision being referred to, as well as specifying the kind.
But the separation, together with these amendments, give something to aim at. I think they are easy to argue for. And might even be achievable.
I sense there is far and away enough of a head of steam on this site for campaign like this to take off. I suggest what鈥檚 needed is:
a. a fresh grouping/loose organisation which is outside the existing charities so that it can be as political as needs be 鈥 if it gets to the stage where (say for example) a point had to be made by targeting a specific MP/MPs, charitable status would be a huge drawback;
b. a grouping which avoids the special school versus inclusion split 鈥 by having a goal which both sides should be able to support;
c. someone who can offer to set up and manage a website, which could serve as a home for the debates that will need to take place to agree on the aim of the campaign and a programme of action. And thereafter be the launch pad and give the steer for a virtual campaign.
What do people think?
Further to Mr Blair's comments today, which have painted a very simple picture that his bright new Academies and its Independent Trust State Schools will resolve all the problems within the SEN field once they come into play.
What Mr Blair did not say was that he was very concerned that the current LEA's and the current State Schools are not complying with the law. That law being the Education Act 1996.
Whilst Mr Blair (and indeed Mr Brown should he become PM) may believe these marvellous academic institutions may deliver an improvement in SEN support for individual children, the system will still be reliant upon specific money to support the specific needs of an individual as appropriate to his/her age. These needs will change as that individual grows. The mechanisims for delievering that support to the individual will still require assessment and will still require a level of monitoring and will still require a system to ensure that the delivery is appropriate and robust. At the moment the Code of Practice requires teachers, head teachers and other agencies to provide early identification. It is this specific set of actions that the LEA manifestly prevent coming to the fore.
It is the second step that the LEA then prevents the parents from seeking assessment and it is all for the purpose of reducing budget expenditure.
I heard nothing in Mr Blair's statement that the government will be addressing the intimidation and fear that the teaching staff and Head Teachers and Governors experience from the LEAs.
I heard nothing in his statement that gave me confidence that the enforcement of the Education Act by either the DFES, the High Court and the Judges or the Local Government Ombudsman, all of whom are profoundly inept in their duty to protect the disabled children of this country who have been suffering by deliberate actions of local government officials.
It is a national disgrace that such bad practice, such inhumane dealings, have been allowed to persist for so many years without competent scrutiny and such lack of acountability and consequence to the law. I hope comments on this blog will be used as a basis for some positive action to improve the life outcomes for the SEN children of this country who are so sadly neglected as the many entries on this blog shows.
Re John Wright's message (138): Is anyone in touch with any members of the Select Committee? They clearly weren't happy about the situation.
I think that John Wright of IPSEA (Comment 138) is thinking along the right lines. I am perpetually outraged by this system that we have that is not only unfit for purpose but also, in many instances, applied in a corrupt manner. Our 19 year-old son has severe ADHD and moderate learning difficulties; we have had to battle afresh for an appropriate education for him at every transition point in his education. His Statement of Special Educational Needs ceases in two months, so our current battle is no longer with the LEA but with the LSC (Learning and Skills Council). The continual battles we have faced are stressful, draining and life-consuming. I have also acted as advocate for other children with 'invisible' SENs and their families. The level of suffering they too have experienced is extreme. This is an issue of child abuse and violation of human rights.
John Wright is wise to try and avoid the 'special school' vs 'inclusion' split. What we parents want for our children is APPROPRIATE EDUCATION - in whatever STRESS-FREE setting a curriculum that they are capable of accessing can be delivered, using teaching methods which suit their particular neurology, giving them opportunities to succeed.
Unless a human being has a reasonable level of self-esteem, it is well accepted that he or she cannot learn readily (Maslow's famous Hierarchy of Needs). Not only is the inappropriate education that is being dished out to our children with SENs cruel, but it may, ultimately, be useless.
Just looked at the PM's website to try and find what he said today and I noticed a webschat advertised with Alan Johnson to take place on Thursday. We can place questions vis this link:
I am the father of a 15yr old child with many disabilities among them deaf/blindness which in itself is a profound handicap. We have recently been involved with the local education authority in the reviewing and upgrading of our sons statement as the original statement was done when he was 4yrs old and his condition and circumstances have changed. What a battle we had, it took from June 2005 to Feb 2007, endless meetings, a professional independant assement, sleepless nights, worry, stress and eventually a date for an appeals tribunal. We had to issue a subpoana to the person who gave the independant assessment for our son as they worked for a different education authority and the authority were not willing to let them have the time off to appear as a witness on behalf of our son. Eventually 10 days before the tribunal our local education authority decided to accept the amendments to our sons statement and cancel the tribunal hearing. It was a phyric victory for us, our son had lost 18 months of appropriate education, the LEA had saved 18 months of extra funding. I believe that there should be some form of legal redress for compensation for costs ect. awarded to families against the LEA if it could be proven the LEA have used unjustifiable delaying tactics, eg a tribunal, and pull out at the last moment when they have known they were going to lose the appeal anyway,based on Government guidelines (National Service Framework and Every Child Matters). Perhaps this would help speed up the statementing process by holding the LEA accountable and they would be less likely to put obstacles in the way of families that are asking for their children to be given the appropriate education that their children need.
John (143), sadly this approach by LEAs is all too common. The Tribunal body itself used to issue statistics which showed that certain authorities regularly pulled out at the last-minute after the parents had had the expense and stress of preparing for Tribunal. They probably still produce the statistics, it's just that I have not seen them for a few years (although I think you may be able to order a report from the Tribunal's website).
I agree that there should be sanctions against LEAs to make it too expensive for them to be so cynical but I cannot see the current government doing anything about it!
Your child may, in principle, be able to bring an action action the LEA for negligence when he is an adult but I understand that it is exceedingly difficult to prove.
I have two children with special educational needs. They now both have statements, BUT NOT because the normal statutory assessment process was a just and satisfying means of obtaining the things they need. I firmly believe that the only reason both my children have statements, is that we catalogued every LEA ineptitude, inappropriateness, breach of their own regulations, and lies. We then took our file to the chief executive of the LEA and said that if our children could not have the help they needed, then we would be going to the Press, the judicial review, and would make a complaint for maladministration. This was after trying a total of five times to get statements for both our children, having two SENDIST tribunal cases under our belts, two out of area hospital referrals, and one complaint against the chair of governors at our children's school.
It is only by not going away, knowing the law inside out, and keeping the profile of our children's cases high in the minds of professionals that they now have statements.
It is appalling that we should have had to do all this, to the expense of our health and our careers (you can't concentrate on a career when properly meeting the needs of disabled children). There is something fundamentally WRONG about how the social, educational and medical needs of our disabled children are met in this country. I have yet to meet ONE parent who is happy with how the LEA has met the needs of their disabled child.
My eldest child now approaches secondary school. Now he has had help for the past year and a half, it is evident that he is very able, if not the MOST able child in his class but prior to accessing the right help he appeared to be amongst the LEAST able. It is essential, if these children are to have any life at all and to have any hope of being productive members of society, that they get the RIGHT help when they are at school.
Jan
re John Wright's message (no 138): yes this is is good idea, please count me in.
I should also like to learn from someone with expertise how to use the Freedom of Information Act to maximum effect. I think it is likely there is a lot of information on file that LEAs would rather we didn't know about, information not relating to an individual child, but which would show how they were operating. Do I hear those shredders being switched on now...
I am fairly intelligent, articulate, educated and work flexible hours but when it came to sorting out a statement for my daughter I still called on help from a local voluntary group called SOS SEN, we did manage to get the care my daughter needed but not without a struggle - what hope have less able parents got? I have noticed that some of the parents of children with special needs have special needs themselves and I can see their children are not being adequately provided for at school.
The long term costs of allowing this injustice to continue are far greater than the short term costs of doing the job properly. The strong may survive but the weak will grow up to bite them on the ass.
Re Accessing files
Parents new to this game will have too much trust in schools, LEAs and Central Government than is good for their special needs child. Diagnosis is actively resisted in any way "they" can. They withold information, deflect, water down, lie .... (who does this remind you of???)
I was told at one point that my daughter "no longer has semantic pragmatic disorder". You do not grow out of autism.
It takes years sometimes. Each appointment has a several month wait.
When I first approached the Child and Family Consultation Service I was given photocopied sheets on discipline (which suggested I was a lax parent). (Funny that my other child - the "control" in this experiment doesn't have AS and didn't show the sort of behaviours I was so desperately worried about in my other daughter.)
Two years later when I went for a second opinion within the same organisation the psychiatrist read from a list of about 8 or so rigid criteria (there are different sets of criteria for diagnosis,) using it as a crude checklist "Does she do this, does she do that etc..." My daughter hid inside her coat, because he insisted we spoke about her problems in front of her. After this, she did not hug me at all for years. (We are OK now.)
When Educational Psychologists test our children for Aspergers / HFA / type problems, they do not have time, or just do not do all of the tests. On some tests our children will excel, on others, they will do the complete opposite. The difference between 98 percent and 2 percent, on different areas. Our ASpie children have a very typical up and down profile, which will be revealed via the right set of tests. "They" hope that parents do not know this, and just do limited teats. I was told my daughter was more or less a genius. A headteacher more or less told me what was I going on about? After all my daughter was in top two per cent of the population. On other tests, had they chosen to do them at the time (they were done later independently) my daughter scored about 2 per cent. What's the use of being in top 2 percent of the population for one or two test results, if you have no friends, are not coping in school, are not supported or understood in school, have everyday panic attacks - hit yourself on the head, slam doors, punch your hand through windows, and do not understand yourself and why this is all happening to you.
He wrote to me after the "consultation" saying that I was trying to pressurise her into a diagnostic category. A few months later I thought of asking our GP if he had written to her. she copied his letter to me, which said yes my daughter "showed some of the symptoms of Aspergers but that it was not a full blown case". While to me he denied it. He would rather I was blamed for seeking a diagnosis, than help my daughter.
Incidentally many of my Aspie friends and aquaintances have been told theirs was not a full blown case, or it was borderline, or not typical AS, or unusual early presentation.
You either have Aspergers or you don't. "They" will say anything to water down the need for provision.
To be the parent of a child with special educational needs in the UK you have to be a very special and fortunate person - strong mentally and constitutionally (the stress is enormous), persistant, have lots of time and pots of money.
You also need to have taken a course in politics and critical thinking, so you can read between the lines of .... that you are so often subjected to.
I think the following extract taken from the Best Value Sub-Committee that is currently posted on the Hillingdon Authority website (www.hillingdon.gov.uk/central/best_value/bestvaluereviews/education_special_needs.pdf page 19) reflects very well the approach authorities take about statements-'The proposal is to cease 30 additional statements through this scheme so saving approximately 拢105,000 at 拢3500 on average per statement. This would be achieved through the creation of a part time post, to be reviewed at the end of the year, at a cost of 拢30,000. This is a 'spend to save' proposal. ......Any extension of the post would be dependent on evidence that it had directly resulted in savings by reducing the number of statements'
Is Lord Adonis expressing his personal point of view, or that of the elected Government? If the later then I would be interested to challenge Gordon Brown on his comments made to the World at One this lunch time in which he has promised to provide individualised learning for 5-11 year olds. I would like to know if this is going to be provided by qualified teachers who have received additional training to provide the correct support for the relevant need. I suspect not.
The current system is not providing a good education to any of our children those with, or without SEN, and will not until this is properly addressed.
So will you ALL please sign our petition that SEN is not FIT FOR PURPOSE, which you will find on the number 10 website.
My husband and I have been fighting schools and LEAs for 6 years. We have a severely dyslexic son who has auditory processing difficulties, dyspraxia and suffers from anxiety and depression due to low self esteem. He attended a mainstream school until he was 8. We were forced to put him in a special school because his self esteem had become so low that he was extremely depressed and self harming. He even tried to kill himself. We had a statement but for only 7.5 hours with a variety of learning support assistants who had no qualification for teaching dyslexic children. The mainstream school did not really try to help us as our son was a blip on their 鈥渆xcellent鈥 SATs results.
We went to Tribunal and lost. We had help from IPSEA and a lot of evidence but unfortunately it wasn鈥檛 enough. SENDIST can cherry pick their way through evidence. We asked SENDIST for a review but the chair refused. When we requested all the documentation pertaining to our son鈥檚 case, we were told that SENDIST is one of the organisations which does not have to provide information under the Freedom of Information Act.
We thought that the government would overhaul SEN after the Education and Skills Select Committee鈥檚 Report in July 2006. How wrong we were.
Parental choice is not paramount in the eyes of the LEA or SENDIST. Saving money is. Every child matters 鈥 what a joke!
Hi
Regarding John Wright's comments. I would really like to be involved in a campaign. I have had years of fighting, being made to feel powerless and it is time the worm turned! It has taken too long to get the help my kids need and this is valuable time that cannot be got back.
I agree that the roles of assessing need and the allocation of resources for provision need to be reassigned to two seperate bodies, so that the LEA is not doing both, thereby creating a conflict of interest. We need to find a way of meeting need without budgetary concerns getting in the way. I also think that a keyworker role needs to be created, with individuals briefed to ensure that the terms of all statements are carried out and the children are receiving everything the statement stipulates. Nobody polices the implementation of statements, and it is down to parents to take LEA's to task where there are problems....... if they have the strength!
The government (whichever one we end up with) is only likely to be motivated to prioritise special educational needs highly if they think it will influence the number of votes they can obtain.
I gave our MP the IPSEA pledge to sign a few years ago, in which he undertook to ensure the LEA kept to the law when dealing with special needs but it did not seem to matter to him when things went wrong and I pointed out to him that he had signed this document and should still have a copy.
I do hope we can come up with a way of making SEN important to politicians.
It is nonsense to suggest that the tribunal is free. The simple fact is that tribunals will not accept any assertion about a child's difficulties or the provision he needs unless it is backed up by expert evidence, and that evidence does not come free.
Access to SENDIST is about to become even more restricted. Current proposals for Legal Aid reform will mean that few, if any, solicitors will be able to help parents under legal aid in preparing for tribunals and obtaining expert evidence. This will mean that tribunals in effect will only be accessible to parents with a reasonably substantial income, and in turn that will mean that in practical terms it is only those parents who will be able to get their children into independent special schools. For a government which alleges that it wants to target help towards the socially vulnerable, this is an extraordinary situation.
Re comment 150; I couldn't find your petion on Number 10's list but I did find this one by Pat Smith who has commented above:
Petition to: 'Allow youngsters with SENs to receive funding for education beyond the age cut ...
It would be good if we could all support Pat's petion; I shall be in the same possition as Pat next year when my son turns 19, and I am sure we are not alone.
I unfortunately did not hear Lord Adonis' comments, but at the risk of sounding arrogant, do not feel that this would have made any particular difference to my views and experienceof the current system for SEN children, ie. that it is a shambles, and for the majority, woefully failing to meet the needs of our vulnerable children.
As a mother of a 6 year old with complex special needs, I already feel something of an old-timer on the battle-field. I have been through one tribunal, and could possibly be facing another in the near future, have lodged complaints to the Local Govt. Ombudsman twice, and via our solicitor presented our Authority with 2 legal letters threatening High Court action over their unlawful actions concerning my son's education. The latest gem from my Authority has been for them to use a recent judgment case concerning another child with completely different needs, age group and educational setting and 'by analogy' as they put it, apply the ruling to my son's circumstances. Although somewhat akin to comparing chalk and cheese, this hasn't prevented the Authority from quickly and gleefully removing all reference to this statemented need from every part of his Statement. As others have suggested, and has indeed been suggested by legal and education professionals, being marked as 'a difficult parent', the SEN Officers see me and others like me as fair game and fight tooth and nail accordingly. Heaven forbid we should get to a state where the Authorities are judging each case on its merits and striving to meet the childrens' needs.
So, I hope that Lord Adonis and all politicians and Local Govt. SEN officers sleep well at night, safe in the knowledge that they are doing their job and that the system works. I like countless other parents and carers have forfeited sleep, my career, thousands of pounds, holidays, and anything remotely akin to a 'normal' family life!
If children with SENs had the right support, many (especially single) parents would not have to give up so many things and live on Carer's Allowance, sometimes for a long time. They thus have reduced pension, no savings for emergencies etc.
I'd like to know what happens when - "take the case of" - a carer who has had to give up work / career because of both their caring responsibilities and having to fight the LEA, and live with their child in their parent's (the child's grandparent's) house, the child's grandparent dies, and the carer has to give up their home because on Carer's Allowance they cannot pay Gordon Brown's Inheritance Tax?
What happens to the parent carer and child with SENs then?
I've just 'listened again' to Lord Adonis' comments and held my head in his hands. This man has obviously never had any connection with anyone with special needs. He would have a different opinion if he had.
I'm the mother of four adopted children all of whom, it transpired are on the Autistic Spectrum, plus a mixture of ADHD. Semantic Pragmatic Disorder, Auditory Processing Disorder, Dyslexia, Dyspraxia and Attachment Disorder.
However, having been sent around in circles for years they weren't diagnosed until they were 16, 17, 15 and 16 yrs of age - and that was after a huge battle for each child. LEA failed each of our children in turn.
We endured two Tribunals, and I mean endured as it was a VERY stressful time for our entire family.
We are not wealthy and incurred debts with the bank because of the all costs of having to pay to get help/diagnoses/reports/ advice from the independent professionals who obviously have to charge for their time. As mentioned in aprevious post it is essential to have an unbiased report and preferably an expert witness - but you have to pay for them.
Many, LEAs now have a barrister to represent them at Tribunal. If you don't have legal representation you are immediately at a disadvantage. It is not a level playing field
Having won the the second Tribunal our middle son at last received the appropriate support at an appropriate school that finally understood his special needs. It was life-changing. I agree with other comments. Two of our children have been clinically depressed, self-harming, suicidal because of their expereiences in mainstream schools.
I use the word 'appropriate' as this is what SENDIST have to look at - 'best' is not what they take into account.
I have also endured ill health brought on by the stress of constant battling to just try to help my children who are all decent human beings, but human beings with difficulties.
We were totally naive when we started on the long route of just trying to get help for our children. I have learned a lot over the last 16 years!!
To help other parents I have detailed what happened to us and how we improved the situation for all our children in a book which was published a couple of years ago.
It is called 'Surviving the Special Educational Needs System: How to be a Velvet Bulldozer' , Jessica Kingsley Publisher ISBN 1 84310 262 5. Borrow it from your libary if you can't afford to buy. It should help you and you won't feel so alone. I've passed along all the helpful contacts I've made over the years. I continue to add to this on my website
www.special-educational-needs.co.uk
I have met parents from all over the UK now and their stories of their experiences with their children are very similar and very sad.
Our children do have something to give back. They do have talents and abilities. BUT they need properly trianed people to understand them and often quiet, calm environments in which to be taught. Sadly, most schools are large and noisy which makes our children stressed and anxious before anyone even tries to teach them anything.
I am still battling now as my children are moving on from special needs colleges (excellent all of them) and trying to help find and set up places for my (still Autistic) and vulnerable young adult 'children'. I'm afraid it isn't easy at this stage either. But that is another story.
As John Friel commented it is a very short-sighted Government policy. By not appropriately helping our children when they are young extra difficulties manifest themselves in the form of mental health problems, etc., thus adding to the cost of caring for our children.
Our children, once adult 'children', are also prey to the less desirable elements of society and can become 'stooges' for criminals or targets for sexual exploitation.
As Julie Maynard said Autisim is a life-long condition. they aren't going to get better. The best we can hope for is a calm and happy life - somehow.
I'm afraid that the Government must be made to realise that the National Curriculum just doesn't fit our children and exacerbates their problems.
I agree with John Wright, we should all come together as one voice to try to make the Government listen and to expose the suffering of children and families the length and breadth of the UK.
There is hope for a better life for our families but unfortunately, because of Government policy,
you have to fight and fight and fight to achieve it.
Good luck all of you with your very special children! God bless. Sandy x
I think LEAs are storing a huge problem up for themselves in future. If I was a judge 10 years down the line with access to this blog page alone I would be able to infer that most LEAs wilfully neglected the needs of children with SEN in this era, contrary to the law of the land. I would happily hand out huge sums in negligence damages / damages for psychological damage / bullying, etc (see the Australian case this week of the 18 year old awarded $1million as a result of bullying).
The USA (often used as an example by HMG when trying to save costs) has much better research / literature on many of those "hidden" difficulties which mean inclusion is a non-starter. They have also recognised it is cost-effective to meet the SEN of the kids with those sort of difficulties - as when they grow up they otherwise have no real survival option than to turn to crime. Our government chooses to ignore the facts in its irrational pursuit of short-term objectives.
Like interest rate policy I think responsibility for education (not just SEN) should be taken away from HMG as they have proved over decades to be meddlesome and, quite frankly, inept in the arena.
For a so-called "Labour" government to treat the country's most vulnerable individuals in the way it does (albeit at arms-length via LEAs) gives an clear insight into cynicism. Let's hope Mr Brown with his alleged socialist credentials will change things!
Who would you trust more on the SEN issue, Mr McGuiness in Northern Ireland, who I understand may have had a "terrorist" background, or Lord Adonis, a spokesman and minister in Her Majesty's Government? A rheotorical question but one has more integrity than the other. Make you own minds up which.
As to the SEN system / law, I think it is pretty good and should not be subject to wholesale meddling / review. What should happen though is that compliance with the law and implementation of appropriate policy be overhauled. At present we appear to have LEAs (and others) disobeying the law; LEAs employing personnel in the field to obstruct rather than deliver for kids; LEAs as well as not delivering for those kids with established need also denying the needs of many, many more. If LEAs were to completely review their systems, by establishing true needs and catering for them locally I believe they could greatly reduce unit costs of provision and, in effect, provide world-class provision to a much greater number of kids than the few that get a good deal at present. The sad thing is though they cannot see beyond what they've always done, the schools they'vev always had and short-term initiatives to reduce the immediate spend.
As I said upfront, this will come back to haunt them and society at large too.
I would also be interested in being involved in a campaign to raise awareness of the difficulties our children face and those we face trying to get their needs met.
Having been through the statementing process once, I am struggling to summon up the energy to face the battle again. Two educational psychologist assessed my youngest twin and found there to be little wrong with him. Our fantastic paediatrician spoke out for him and 4 years later he will be on 30 points as from September. My eldest twin is much higher functioning so I envisage an even harder battle.
Whilst the mainstream school my children attend (Tillingbourne) is fab with ASD children, the LEA has been taken to task by the DfES over the appalling blandness of their statements (that is their refusal to specify interventions). The LEA refuse to admonish schools that fail children...both of my boys care was minimal, I was even asked by one SENCo 'what is it you expect of your son?', sats results have been exagerrated. This LEA has managed to trim 拢2000 off of statement costs for children with 25+points and dressed it up as their needs being met through earlier intervention. Yet in so many of their mainstream schools there is no speech and language therapy available, little differentiation of curriculum delivery and a blanket refusal to organise the appropriate referalls to gain much needed resources. Statement reviews take over 6 months to be completed and when you raise concerns about education delivery (including incidents that could be construed as child abuse), they do not wish to investigate or quite frankly care.
I feel the government rely heavily on the exhaustion parents feel and the prohibitive costs involved to minimise the amount of bad publicity they receive on the delivery of SEN provision. Perhaps the last 4 years have made me cynical. But an organised, media campaign involving many parents may be just what is needed.
Further to my earlier post, I forgot to mention that one of the reasons it took 10 years before the first of our Autistic children received the diagnosis/help she needed was because I didn't know that you could Appeal to Sendist (or that Sendist existed) if the LEA refuse to issue Statement,not just about the content of the Statement. Doh!!!
My children's lives could have been SO different had I known this simple fact and so many of their additional psycholigical/emotional difficulties avoided.
Only two of our children received any Statement at all. Both were inadequate Statements, one remained inadequate due to our ignorance. The other (manyyears later) we challenged at Tribunal and when we won and a proper Statement (written by our legal representative) implemented it changed our son's life. A good Statement, that is implemented by the LEA is worth having BUT what you have to go through to achieve this is beyond belief.
THIS IS AN EMAIL FOR THE MODERATOR...
I sent the following email before the second email but it hasn't appeared.
I believe I made some valid points, including the helpful point about borrowing my book from the library as a help to parents - I cannot be accused of 'plugging my book surely?
If you do not agree with mentions of something helpful then pse edit but I would like my comments blogged please. This is a very important subject and I have been involved with the special needs system on behalf of my 4 autistic children 4 times so do know a bit about it!!
Kind regards, Sandy...
Original email follows now:........
I've just 'listened again' to Lord Adonis' comments and held my head in his hands. This man has obviously never had any connection with anyone with special needs. He would have a different opinion if he had.
I'm the mother of four adopted children all of whom, it transpired are on the Autistic Spectrum, plus a mixture of ADHD. Semantic Pragmatic Disorder, Auditory Processing Disorder, Dyslexia, Dyspraxia and Attachment Disorder.
However, having been sent around in circles for years they weren't diagnosed until they were 16, 17, 15 and 16 yrs of age - and that was after a huge battle for each child. LEA failed each of our children in turn.
We endured two Tribunals, and I mean endured as it was a VERY stressful time for our entire family.
We are not wealthy and incurred debts with the bank because of the all costs of having to pay to get help/diagnoses/reports/ advice from the independent professionals who obviously have to charge for their time. As mentioned in aprevious post it is essential to have an unbiased report and preferably an expert witness - but you have to pay for them.
Many, LEAs now have a barrister to represent them at Tribunal. If you don't have legal representation you are immediately at a disadvantage. It is not a level playing field
Having won the the second Tribunal our middle son at last received the appropriate support at an appropriate school that finally understood his special needs. It was life-changing. I agree with other comments. Two of our children have been clinically depressed, self-harming, suicidal because of their expereiences in mainstream schools.
I use the word 'appropriate' as this is what SENDIST have to look at - 'best' is not what they take into account.
I have also endured ill health brought on by the stress of constant battling to just try to help my children who are all decent human beings, but human beings with difficulties.
We were totally naive when we started on the long route of just trying to get help for our children. I have learned a lot over the last 16 years!!
To help other parents I have detailed what happened to us and how we improved the situation for all our children in a book which was published a couple of years ago.
It is called 'Surviving the Special Educational Needs System: How to be a Velvet Bulldozer' , Jessica Kingsley Publisher ISBN 1 84310 262 5. Borrow it from your libary if you can't afford to buy. It should help you and you won't feel so alone. I've passed along all the helpful contacts I've made over the years. I continue to add to this on my website
www.special-educational-needs.co.uk
I have met parents from all over the UK now and their stories of their experiences with their children are very similar and very sad.
Our children do have something to give back. They do have talents and abilities. BUT they need properly trianed people to understand them and often quiet, calm environments in which to be taught. Sadly, most schools are large and noisy which makes our children stressed and anxious before anyone even tries to teach them anything.
I am still battling now as my children are moving on from special needs colleges (excellent all of them) and trying to help find and set up places for my (still Autistic) and vulnerable young adult 'children'. I'm afraid it isn't easy at this stage either. But that is another story.
As John Friel commented it is a very short-sighted Government policy. By not appropriately helping our children when they are young extra difficulties manifest themselves in the form of mental health problems, etc., thus adding to the cost of caring for our children.
Our children, once adult 'children', are also prey to the less desirable elements of society and can become 'stooges' for criminals or targets for sexual exploitation.
As Julie Maynard said Autisim is a life-long condition. they aren't going to get better. The best we can hope for is a calm and happy life - somehow.
I'm afraid that the Government must be made to realise that the National Curriculum just doesn't fit our children and exacerbates their problems.
I agree with John Wright, we should all come together as one voice to try to make the Government listen and to expose the suffering of children and families the length and breadth of the UK.
There is hope for a better life for our families but unfortunately, because of Government policy,
you have to fight and fight and fight to achieve it.
Good luck all of you with your very special children!
I have a 13 yr old son with Aspergers and dyspraxia. I cannot bear to describe what the last 8 years have been like, but will summarise by telling you that, after spending about 拢20,000 for reports from Ed psychologists, physiotherapists, psychiatrists, pediatricians.. we lost our SEN tribunal. The whole process has beeen completely harrowing, humiliating and ulitimately fruitless. Furthermore, we, the parents, were made to feel like criminals both by the LEA AND the SEN tribunal. The tribunal was unbelievable; the chairwoman was aggressive, and interrupted our barrister on several occasions. WE later discovered that the chairwoman has a reputation for this and had been sent for retraining! It didn't work. Why is she still allowed to chair tribunals?
We have finally found a school for our son,which seems to be working, which we are paying for ourselves.
WE also have to pay for our son ( who suffers from depression) to see a psychologist for treatment because the local CAMHS team (mental health) are short staffed and cannot provide a psychiatrist. We have also paid for him to have physiotherapy, because he falls just ourtside the guidelines for treatment from the NHS. We pretty much pay for everything for him. Does this sound familiar to anyone? No prizes for guessing where my income goes!
I am both comforted and saddened by the huge number of responses above- comforted because I realise that others have had the same terrible experience as us and saddened because our government has failed us and our son in so many ways. Shame on you all.
I have a 13 yr old son with Aspergers and dyspraxia. I cannot bear to describe what the last 8 years have been like, but will summarise by telling you that, after spending about 拢20,000 for reports from Ed psychologists, physiotherapists, psychiatrists, pediatricians.. we lost our SEN tribunal. The whole process has beeen completely harrowing, humiliating and ulitimately fruitless. Furthermore, we, the parents, were made to feel like criminals both by the LEA AND the SEN tribunal. The tribunal was unbelievable; the chairwoman was aggressive, and interrupted our barrister on several occasions. WE later discovered that the chairwoman has a reputation for this and had been sent for retraining! It didn't work. Why is she still allowed to chair tribunals?
We have finally found a school for our son,which seems to be working, which we are paying for ourselves.
WE also have to pay for our son ( who suffers from depression) to see a psychologist for treatment because the local CAMHS team (mental health) are short staffed and cannot provide a psychiatrist. We have also paid for him to have physiotherapy, because he falls just ourtside the guidelines for treatment from the NHS. We pretty much pay for everything for him. Does this sound familiar to anyone? No prizes for guessing where my income goes!
I am both comforted and saddened by the huge number of responses above- comforted because I realise that others have had the same terrible experience as us and saddened because our government has failed us and our son in so many ways. Shame on you all.
Sarah Williams (10 on the site) touches on something which concerns me a lot. She writes, "The teachers are unable to support the therapy within the class room because the expertise and experience is not shared." My own experience as a teacher over the past four years is that there is such a shortage and lack of access to Speech and Language therapists, Occupational therapists, Dieticians, etc. that there is almost no 'therapy' going on at all. Yet that is what the most profoundly autistic need, not 'education' but therapy. Not schools but almost a clinical situation. There is no doubt in my mind that the success of ABA is founded on the fact that it requires 40 hours per week of input from undergraduate psychology students and parents who are involved and trained. Typically I worked with a class of six pupils and up to eight LSAs. All too often the LSAs were people who had very little education or were backpackers or 'resting' thespians or immigrants with very poor English language. Occasionally I got someone from abroad with a degree in Psychology or Qualified Teacher Status. These people were all trying to subsist in London on 拢15,000PA for a job which the schools were only prepared to regard as part time. This had several knock-on effects. They all dashed out of school at
3:30pm when I would have liked them to complete an eight hour day with training, case study, discussion or planning. They were dashing to their second jobs with the consequence that in the morning when I arrived bright eyed and bushy tailed after a proper evening meal a hot bath an early night and a proper breakfast they would arrive bleary-eyed and spend my pre-school pep talk drowsing over a coffee and something out of a paper bag. When at the end of the long Summer, Christmas or Easter holidays, which I spent in my caravan, I asked them what they had done they invariably replied, " I worked on a summer play scheme", " I worked as a care assistant in an old people's home" or " I worked on a respite scheme for kids with Autism". No respite then for those who already spent 39 weeks of their life being kicked, hit, bitten, spat on and attending to pupil's incontinence.
Working as an LSA is not babyminding. If done properly it is a skilled vocational job.
Whether in mainstream or special schools what is needed for LSAs is a full time paid job, proper training and education, qualification and a career ladder.
Post 161. Re: being made to feel like a criminal.
Some parents have been threatened with legal action, 拢2000 fine and criminal record when their child became school phobic and refused to go there anymore. So "criminal" is actually an appropriate term for how some of us were treated.
In effect parents are being crucified for having had the sheer audacity to have a child with SENs.
Mike Canty (163) I agree wholeheartedly with everything you have said. So many parents are going to Tribunal for ABA therapy for their children because it is MEANINGFUL and what is being offered by the LEA is a meaningless nonsense to children with autism.
My child has autism and severe learning difficulties and has been placed in an LEA special school. The TA's seem nice enough, but they have no training or expertise in Autism and no clue how to communicate with my son or teach him in a way that he can understand. The staffing level in his class for the most severely and profoundly disabled children is 3-1, so he spends much of his school day wandering aimlessly. My son needs 1-1 support and the idea that any staff member (trained or otherwise) can teach my son and two others at the same time is absurd. Having run a successful ABA program at home and seeing how my son is capable of learning given the right teaching methods, we are horrified with what the LEA believes passes for an "adequate" education. The treatment (or rather lack of it) for children with Autism in a national disgrace.
I have sat in a review meeting for my 7 year old with autism where all around the table (SENCo, class teacher, EP and I) were in agreement that my son should have additional 1:1 to help at afternoon playtimes with social skills training. When the SENCo asked the EP to write this in a report she replied "Oh, I couldn't. My life wouldn't be worth living if I did that." The "assessors" are too worried about the cost of appropriate provision because they are paid by the LEA.
I am a governor of a primary school and went to a "Budget Roadshow" where the LEA tells schools how little funding they'll be getting next year. The LEA has a major shortfall so one of the ways they said they had considered saving money was "reducing the number of statements". They obviously thought they were only talking to a bunch of accountants but I couldn't get over the bold cheek of the statement. They said that, in the end, this would be difficult (especially as the Roadshow was in March for the year starting in April) so instead they had decided to reduce the hourly rate they paid for TA support in the classroom (i.e. if you had 20 hours per week at 拢7.54 per hour it was now going to be 拢7.40 per hour) I can't exactly remember the numbers but in effect the school would have to fund the difference PLUS any inflation allowance PLUS any movement in salary scale.
Responding to J.David's comments (blog 166) -as a mother of a 4 year old child with mild/moderate autism who has made HUGE progress on an ABA programme over 14 months, I agree that for us too ABA was the only plausible education and I was not prepared to "chance" the local nursery unit for autistic children using the Teacch method that was offered to us by our LEA (2 hours per day, term time only). The ScAMP project ABA results were out two weeks ago, proving that the majority of ASD children responded really well to ABA and increased their IQs significantly. Yet another peer reviewed "it actually works" tick for ABA. (Where are the parallel reviews for Teacch?)
We are now facing a stressful and costly tribunal later this year (if tribunals are free, does that mean I'll be able to reclaim my costs?!). The LEA have provided plenty of positive rhetoric at "friendly" meetings, but the reality in my son's statement is a joke. I am an educated, articulate primary school teacher (when I can fit in work around my son's ABA programme), and have seen how some SEN children are let down by the system. I will not allow this to happen to my son. ABA is working for him, and will give him life skills that will prevent him from becoming a financial burden on the state in adulthood. So why the shortsightedness? Short term increased cost. How ridiculous is that?
I AM A PARENT IN LONDON BOROUGH OF LEWISHAM FIGHTING ONCE AGAIN FOR MY DAUGHTERS EDUCATION.
SHE ATTENDS A GET SPECIAL SCHOOL WHICH MEETS ALL HER EDUCATINAL NEEDS AND FELLOW STUDENTS NEEDS TOO.
YET AGAIN INSTEAD OF THE LEA PRASING THE SCHOOL AND ALL ITS GREAT TEACHING STAFF FOR BEING THE 1ST SPECIAL SCHOOL IN THE COUNTRY GAINING SPECIALIST HUMANITIES COLLAGE AND HAS BEEN ABLE TO OFFER STUDENTS A WIDE RANGE OF EDUCATION TO CATER FOR ALL THERE INDIVIAL NEEDS
THERE ARE STUDENTS AT SCHOOL SITTING GCSE WHICH THEY WOULD NOT EVEN BE ENTER FOR AT MAINSTREAM AND HOW DO THE LEA RESPOND TO THE GCSE RESULTS BY SAYING (THIS MEANS ALL THESE STUDENTS CAN GO TO MAINSTREAM SCHOOL) BUT 45 0/0 OF THE STUDENTS THAT ATTEND THE SCHOOL HAVE COME HERE FROM MAINSTREAM WHEN IT FAILED THEM AND THEY COULD NOT READ OR WRITE WHEN THEY STARTED AT THE SCHOOL.
WE DONT WANT MAINSTEAM UNIT WHICH THEY ARE PLANING TO SEND EXISITING AND FUTURE STUDENTS TOO.
CHILDREN SHOULD BE TREATED THE SAME AS ANY ONE ELSE HOW CAN YOU CALL UNITS INCLUSION I AND FELLOW PARENTS CALL IT EXCLUSION IN THE EDUCATIONAL SYSTEM.
WE WANT CHOICE OF SPEACIAL SCHOOLS AND MAINSTREAM SO EACH STUDENT AND PARENT CAN DECICED WHAT BEST FOR EACH OF THEM.
LEWISHAM SHOULD BE PROUD OF
(PENDRAGON SCHOOL) AND LEAVE IT ALONE.
THEY NEED TO BUILD AN ALL AGE SCHOOL FOR CHILDREN WITH AUTISUM SO BUILD IT BUT NOT BY TAKING TO GOOD SCHOOL THAT WORK AND REPLACING IT WITH ONE THAT NO LONGER CATERS FOR ALL EXITSING STUDENTS BUT STILL CALLING IT PENDRAGON SCHOOL.
THE MAYOR OF LEWISHAM CAME TO VISIT THE SCHOOL LAST WEEK AND MY DAUGHRTER AND HER FREINDS TOLD ME HE SAID HE WAS IMPRESSED WITH THE SCHOOL AND PRAISED THE STUDENTS, LETS HOPE HE THINKS ABOUT THIS WHEN HE HAS MAKE A DECISSION ON THE SEN REVIEWS TO CHANGE OUR SCHOOL.
THIS IS THE YEAR 2007 AND I CANT BELIVE WE ARE GOING BACK IN TIME NOT FORWARD .
WHAT GOING ON IN THIS BOROUGHOF LEWISHAM STOP TRYING TO FOLLOW OTHERS BE UNIQUE AND MAKE A STAND NOT TO CHANGE SPECIAL SCHOOL THAT WORK .
I am the mother of a profoundly autistic nine year old daughter. After a bitter battle we won funding for a home programme when our daughter was three (after using up all our savings paying for the home programme for the previous year, and solicitor's fees on top of this). We ran the home programme for five years resisting the LEA's attempts to force us to send our child to the local unsuitable LEA provision. Then we got an offer of a place at Treehouse School. We were over the moon.We foresaw a chance to escape the poverty trap and have our daughter suitably educated. We asked the LEA to consider the placement, instead they re-wrote our daughter's statement removing the funding for the home programme and naming the local provision that we had been resisting for five years. We went to Tribunal. As our LEA uses barristers to fight parents we hired a solicitor and an independent EP (borrowing money to pay for this). We spent in excess of 12K and lost at Tribunal because the three members of a Tribunal panel (who had never met our daughter) chose to listen to the views of the Head Teacher of the unsuitable provision (who had never met our daughter) the LEA's barrister (who of course had never met our daughter) and the EP who had met our daughter for twenty minutes twice in five years. They completely dismissed the views of her parents who had lived with her and educated her 24/7 for the previous eight years of her life. We were left to choose between sending her to the LEA's rubbish provision or continuing to educate ourselves at home with no help and no support. The LEAs provision was so unsuitable that we have had no alternative but to keep her at home and educate her ourselves. We are caught in a poverty trap which is inescapable thanks to the poor quality of the SEN system.
Lord Adonis is a politician. With all that that word has come to signify I don't find his comments in the least bit surprising. The great shame is that parents, families and their friends don't use the political system, and campaign TOGETHER to get rid of politicians such as Lord Adonis.
A sort of silence has descended.
I felt as if I have been crying out into a vacuum / space (remember the film Alien?) for years. I hope it's not the same silence.
I get the feeling that no one will help us. Not Government, not LEAs, not NSPCC, not Church or Temple, no one.
Other things, e.g. the millennium dome or the olympics are far more important obviously than children with special educational needs.
We need a champion, a charismatic, reliable, uncorruptible, steadfast champion for our children with SENs. Someone who doesn't care for money or power, someone with a sharp / barrister like brain. An almost mythological good creature. It therefore seems hopeless!!!!
Parents who are through the education years are burned out and weary but want to help those still in the midst of the fight. How? How can we help?
Parents still in the midst of the battle of the school years are just not able to get the time and strength to rise up out of their own situation and tackle the whole picture (unless extremely wealthy and do not have to work).
Parents are fighting the very same battle with their LEAs, reinventing the wheel in parallel, but spread out over the UK. They face the very same problems, but are not linked up as one fighting force. How can we join up together and take on the whole lot together???
Where is justice? Where is compassion? where is focus and momentum?
My husband listened to this programme after a day caring for and teaching our profoundly disabled child. Lord Adonis should be ashamed of himself, we are sickened by the hypocrisy of the special needs system which exists only to give employement to local pen pushers. Adonis insists that tribunal is free- but he LEA have ed psychs, barristers, solicitors and other staff ranged against you in order to defeat parental choice and place your child in sub standard teaching. How fair is it to have a review or tribunal with one parent lined up against 10 people? He should try it. I completely understand why Ruth kelly chose to duck this and move her child to independent provision, I would love to do this but it is not possibel!
John Wright's description of action seems to me to be a very good idea as we all seem in agreement that our stories are telling the same sad tale. I don't have the expertise to set up and manage a website but am happy to be vocal from the educational context; despite an SEN LA advisor requesting that I don't campaign, I believe that freedom of speech remains a fundamental right. Who else would band together and who could set up the website? Will the 大象传媒 respond to this site and invite some of us on to a programme to talk?
Here is a link to a draft document by the Commission for Social Care Inspection.
See: Appendix A - Definitions and Types of Abuse.
There must be other definitions, but this is a start.
Looking at this, I think the education system abuses both children and parents.
Further to your posting Ann, it would be great if they did. Surely it would become more difficult for the politicians to argue against the evidence if they are 'confronted' with anecdotes such as those posted on this blog.
The website sounds a fabulous idea too!
I think I spoke to you in november before I went to SENDIST. We didn't win (no suprise, they sprung a barrister on us the day before the hearing). You were realy inspirational. I wanted to phone you and say thanks but I lost your number.
Well done for taking your difficult experiences and becoming a SENCo...you are definately making a difference. If only people like Lord Adonis could share some of our experiences, perhaps the system would then change.
With the amount of postings, the 大象传媒 reallt should do an in depth programme looking into the realities of SEN.
The problem is, I still think that many parents going through it now are just too FRIGHTENED to get involved and speak out, because of what the LEA could do. I know I was SCARED STIFF.
Just one other thing that has come to mind, but what about the health implications of parents/carers struggling to manage their child's educational issues. Stress can bring on many symptoms and illnesses and I doubt one parent/carer who has written on this blog has sailed through all this with their health intact! So not only is the system costing thousands in monetary terms, but it is also costing people's health. It would be interesting if people could list just the costs involved and health problems they have suffered! Mine is 拢12000.00 and gastritis (brought on by stress)! Sadly I doubt this will remain at 拢12000.00 for long. At the end of the day he is still not out of infants and I have already had one JR, one tribunal and an ombudsman complaint.
Pat (165 & 171) has raised an important point (again). My partner and I were in the first tranche of CSA 'clients' in the 1990s. Having survived that Kafakaesque situation we have since seen exactly the same tactics brought into play by the educational welfare (sic) service who sent us thinly veiled threats of prosecution if we didn't send our daughter back to school (she had viral tonsillitis). So far we've been relatively lucky with our SEN son (hardly any support, mind you). I trained as a psychologist and a primary teacher so, with a bit (well, quite a lot actually) of homework, I've been able to figure out what support he needs - and he attended an excellent infant school. But I can see the storm clouds building as his current school mutters things like 'poor motivation' and 'not enough progress'.
I don't want to live in a country whose citizens are treated like this. The problem is that we,the victims of these grotesque systems, are too cash-strapped/ exhausted/ill/busy/frightened to organise collective action. We can't march or demonstrate easily because of childcare problems or the difficulties of taking the children with us. Collective visits to MPs' surgeries? Mass write-a-letter to your MP day? Mass phone-Andrew Adonis'-office day? Co-ordinated demonstrations outside county council offices? Sit-ins at local schools? For me, successive governments have broken the psychological contract over so many issues I'll sign up to more-or-less anything. Just don't ask me to organise it!
Re John Wright's idea count me in! I have just spent another hour reading harrowing accounts from parents about their treatment by the system. I am full of admiration for these people and left feeling so angry that the government is simply not listening to the only people who really know what is going on. I wouldn't know how to set up a website but would be willing to do whatever I could be it marching, writing, emails, co-codination support and ideas - anything. Our children deserve better.
I would like to support John Wright's idea. I am not the right person to set up a website but offer help in any other area. The messages above are heart breaking. Our children and their parent's deserve the best a country as rich as ours can offer. They should not be fobbed off with a one size fits all solution and in my experience the size fits noone.
The situation re special educational needs in the UK has been talked down and spun and denied out of all existance by government and LEAs.
So much so that parents are sometimes not quite believed when they tell those outside the SEN community what really goes on.
It is a situation managed by government and LEA denial.
Hard bitter unjust inhumane reality has been reduced to no problem at all - cue: smiles and waves, move on - politicians can walk away, but carers can't.
How can this situation be addressed unless the whole terrible truth of the situation is honestly acknowledged by someone in power?
How can you sort a problem till you take all factors on board?
Call a spade a apade Mr Blair, Mr Brown, Mr Adonis, and your like - the situation re SENs in the UK is a crisis, a catastrophe and tragedy.
Money saved on the back of silent child suffering. What voice do disabled or vulnerable children have?
Parents are ruthlessly stamped down merely for trying to get support or provision.
Kids lost to the system because they cannot cope in school are conveniently lost to the education statistics.
The situation re SENs in the UK is plagued by dishonest assessments of our children by LEAs and dishonest assessments of the whole situation by politicians. They collude and deny and spin.
Parents are forced to force their children into an ever more rigid and defined system, and if our children do not fit, cannot cope, they get the minimum of or no support at all, and parents get the blame for any reactive behaviours etc.
At the moment the majority of the general public seem unaware largely of what goes on in the SEN community. (I would like to believe that if they knew the reality / truth of the situation they would cry outrage.)
They are seeing the situation how the governents and LEAs have spun it together. They have kept parents of children with SENs busy with tribunals, so they have no time to speak out.
Tribunals are used as part of actual procedure now. Not as a recourse in particularly difficult cases, but in many cases. Tribunals are used to save money, to fend off parents. Was this what they were meant to do?
So we are now still having to deal with the situation on the government's terms, piecemeal, uncordinated etc.
Where are the independent checks on the system? Where?????????????
Meanwhile vulnerable children with SENs who cannot cope with what is thrust upon them by the state, still wish they were dead, and parents age before their time and get ill through stress.
They have learned to exist, survive without hope or respite.
Is ours an equal and civilised society?
The situation re special educational needs in the UK has been talked down and spun and denied out of all existance by government and LEAs.
So much so that parents are sometimes not quite believed when they tell those outside the SEN community what really goes on.
It is a situation managed by government and LEA denial.
Hard bitter unjust inhumane reality has been reduced to no problem at all - cue: smiles and waves, move on - politicians can walk away, but carers can't.
How can this situation be addressed unless the whole terrible truth of the situation is honestly acknowledged by someone in power?
How can you sort a problem till you take all factors on board?
Call a spade a apade Mr Blair, Mr Brown, Mr Adonis, and your like - the situation re SENs in the UK is a crisis, a catastrophe and tragedy.
Money saved on the back of silent child suffering. What voice do disabled or vulnerable children have?
Parents are ruthlessly stamped down merely for trying to get support or provision.
Kids lost to the system because they cannot cope in school are conveniently lost to the education statistics.
The situation re SENs in the UK is plagued by dishonest assessments of our children by LEAs and dishonest assessments of the whole situation by politicians. They collude and deny and spin.
Parents are forced to force their children into an ever more rigid and defined system, and if our children do not fit, cannot cope, they get the minimum of or no support at all, and parents get the blame for any reactive behaviours etc.
At the moment the majority of the general public seem unaware largely of what goes on in the SEN community. (I would like to believe that if they knew the reality / truth of the situation they would cry outrage.)
They are seeing the situation how the governents and LEAs have spun it together. They have kept parents of children with SENs busy with tribunals, so they have no time to speak out.
Tribunals are used as part of actual procedure now. Not as a recourse in particularly difficult cases, but in many cases. Tribunals are used to save money, to fend off parents. Was this what they were meant to do?
So we are now still having to deal with the situation on the government's terms, piecemeal, uncordinated etc.
Where are the independent checks on the system? Where?????????????
Meanwhile vulnerable children with SENs who cannot cope with what is thrust upon them by the state, still wish they were dead, and parents age before their time and get ill through stress.
They have learned to exist, survive without hope or respite.
Is ours an equal and civilised society?
I think special school are the dumping grounds for children who the LEA see as without hope. Even now there is good evidence that disabled children can make great progress with the right help, they are still treated like they're not worth the effort and parents are horrified. We can see our children's unique talents and enormous potential, but the system can't afford for parents to have hope for their children because it's too expensive.
So anxious parents are treated like trouble-makers and children are left to struggle without appropriate support.
Meanwhile the only kids getting the help they need are the ones whose parents can afford Tribunals with hot-shot lawyers. The LEA doesn't mind because they know how difficult the system is for parents to navigate and they know only a few will make it over the final hurdle. So going to Tribunal is still much cheaper for them than providing for all children.
It may be a cheaper option in the short term, but sadly it doesn't take any account of the long term costs or the human consequences to the families struggling to cope. Whenever I hear of a mother and son jumping from a high place to end their lives I guess right away that these are the actions of a desperate parent like myself. These are devoted parents for whom death looks like an appealing option.
What does that say about our society and our treatment of disabled children?
The Government has apparently announced that an extra (extra to what?) 拢340 million is to be spent on services for disabled children and their families.
Where and to whom will this go? On LA penpushers and gatekeepers?
Let's also wait and see how much goes on those with HIDDEN disability / learning difficulties / autism /ASpergers etc. Those whose challenge is internal.
A ramp or a handrail is no earthly use if your main problem is autism or Aspergers syndrome.
See:
www.edcm.org.uk
Tricia Blog 150
Please can you be more specific about where on the No.10 website the petition is. I have tried to find it but there are thousands on the site. Even putting in words like SEN and Fit for purpose do not help.
Thanks
Alan Thomas
I support John Wright's suggestion as it actually echoes the point I had already made (124)
My father has in fact already got a website in place based on our experiences to date with my son. www.senproblems.co.uk
I would be very happy to help with any moves to set up an independent group to collate key views to take to the government.
It is possible to leave messages at the above website.
Kate Dadd
Alan Thomas (185): I assumed it was the one created by Tom Husband and Adriana Forte. Is that right, Tricia?
Thanks Kate, I have made contact on your website and urge anyone else who is willing to start some discussion about action to do the same, I know some of you have posted that you are interested. It seems an ideal opportunity, John Wright please contact us! Ann Bauer
Potted Asperger Syndrome
(A Mum鈥檚 experience of Asperger Syndrome, and of the UK education system etc., for Lord Adonis, Tony Blair, Gordon Brown etc to read and learn from. They either don't seem to have a clue / or / they don't care. This is written in the hope that they do have some sort of Jimminy Cricket lurking in their hearths.)
Asperger Syndrome is a hidden, complex, subtle, (not subtle as in negligible, but as in extremely hard to describe) disability. Other people often know nothing at all or very little about Asperger鈥檚. They therefore cannot make allowances and may make assumptions and judgements about the person with AS, or take their behaviour personally.
E.g.: Other people apply the usual criteria for judging others, and applying it to an Aspie, misunderstanding them as being 鈥渉orrible鈥, 鈥渕oody鈥, 鈥渟ullen鈥, 鈥渉yper鈥, 鈥渟elfish鈥, 鈥渁nti-social鈥, 鈥渟low鈥, 鈥渓azy鈥, 鈥渃ontrolling鈥, bossy鈥, 鈥渃lueless鈥, 鈥渄eaf鈥, 鈥渘ot paying attention鈥, 鈥渞ude鈥, 鈥渁brupt鈥, or 鈥渢actless鈥, etc etc. WRONG!
鈥淭hey should be able to do that鈥 you might exclaim. Well, they CAN鈥橳.
You CANNOT judge those with AS in the same way you would judge others. You CANNOT apply the usual criteria. They are wired in a completely different way, they behave in a completely different way, and have a completely different perspective.
Someone with Aspergers can seem contradictory. They don鈥檛 鈥渁dd up鈥. It doesn鈥檛 make sense that they can be or do this, yet not that.
It also makes their parents / carers look as if they are exaggerating, 鈥渕aking it up鈥, speaking a foreign language, etc etc. Please BELIEVE carers / parents. We are not having fun. We are having a very difficult life. We are trying our best to cope. Life is seriously difficult for us. Parent鈥檚 /carers are the 鈥渋nbetweenies鈥. We have a foot in each world. We are the interpreters both for our children about the world, and for the rest of the world about our children. Some of the difficulties and problems we STILL cannot put into words quite yet.
It affects the whole of carers鈥 lives. We spend most of our time trying to get help, understanding and support for our children. We are not being awkward. Although after a few years we might get very very frustrated at the ignorance of others and their unwillingness to find out about Aspergers.
The impatience and perplexed looks, and refusals of help on totally inappropriate grounds using totally inappropriate criteria frustrate us no end, and we too like our children feel cast outside of society.
If a carer cannot get / are hindered in obtaining a diagnosis for their child, imagine trying to interpret a culture and language without a phrase book.
You cannot judge parents鈥 behaviour in the usual way either. E.g. A teacher says of a parent, with horror, 鈥淒o you know, she did not hold his hand when he was a little boy鈥, as if the Mum was cold and indifferent. The reality of being the Mum of a child with autism / Aspergers, is that the child might be one of those that scream if you tried to hold their hand.鈥 This is upsetting for the Mum in itself, let alone when she is judged negatively for it.
Regarding hugs 鈥 they are on their terms when they feel OK to do this. A mum can鈥檛 just hug her child without asking / warning them, or may not be allowed to hug them at all. (Is this why some Mums in the past have been called 鈥渞efrigerator mothers鈥?!)
We adapt to our children. We allow for their behaviour, we absorb a lot of it ourselves. We manage our children ALL the time. We don鈥檛 cause all this stuff, except if we have inadvertently passed on the genes.
Parents accommodate their child鈥檚 behaviour from a baby when they scream non-stop day and night and we have to play Richard Clayderman music on a repeat deck all night to ensure sleep.
We take for granted the ways in which we accommodate our children, we avoid the people places, noises, that distress or panic them, and we give up the idea of taking them out for the day (鈥淚 have to go home now鈥) or of going on holiday 鈥 we just stay home, and cannot have much of a social life. Relationships are affected. The lone parent thinks 鈥淲ho will take me on, when I have this to deal with?鈥).
If you asked us to describe our children or how we accommodate them/their behaviour, we would find it hard to describe it to you as it is like describing a foreign or alien land. We know you would not understand as it is outside of your experience. We know that you are more likely to judge us and our children with the criteria you would apply to a 鈥渘ormal鈥 child, and so we struggle to. (How do I explain it to them, put it in terms they will understand? They will think I am making it up.) If I were to explain part of it, it might not sound too bad, the thing is, it is part of an overall pattern of behaviours. The behaviours are concrete expressions of what is going on inside them. It should not be underestimated in it鈥檚 effects on the individual, the barriers it places upon their life chances, and the ongoing strain it places on families.
When they are young, they have trouble describing what causes / triggers their behaviour to us. E.g. standing in queues. They might keep looking at the people behind them, and being distressed. They pull you in beside them to act as a shield. You might think it鈥檚 just nervousness re proximity, but it is actually more like horror of proximity to others. Also the rules re queuing are hard for them to understand sometimes.
We see them suddenly 鈥済o off on one鈥, and have no idea what sets it off.
What is true for others, is unlikely to be true for those with AS. You can only understand this by living with someone with AS, or meeting and getting to know a number of them and listening to their stories of coping with life.
In some situations, for a while, they may seem to be 鈥渘ormal鈥 and coping, they may be in 鈥済uest mode鈥. However change, something unexpected happens, or an ongoing combination of assaults on their sense becoming too much to bear = panic attack. Even sneezing, laughing or coughing from a person near them, someone鈥檚 tummy rumbling, a radiator, clock or light humming, or high pitched singing TV or electronic noise. If a situation becomes crowded they panic, and want to leave the situation immediately, without thinking properly, and in a distracted distressed manner.
This needs repeating: A predisposition to sensory overload.
Asperger鈥檚 is a form of Autism but those with the condition are generally said
to be at the more able end of the spectrum. It is sometimes described as 鈥渕ild autism鈥, but MILD it is MOST DEFINITELY NOT.
Some Asperger people do not have a language delay, but some do. E.g.: A child could be diagnosed with a 3 year language delay, and Semantic Pragmatic Disorder, when aged 6, and this updated to Asperger鈥檚 syndrome at age They are often very good and fast de-coders / readers, but may not understand meaning or implication. This is a barrier to learning, and to interacting with others.
AS youngsters find verbal instructions hard to follow, or what is said to them in conversation. (The use of tape recorder could help with this.) AS school children often HATE homework, for this reason, also because the strain of being at school all day is too much and they just need to chill out at home. They may not appreciate a parent鈥檚 attempts to help with homework either. They are unable to take on board and in some situations find it hard to completely trust another person鈥檚 knowledge, experience and feelings. It often (well always in my experience) ends in frustration and tears.
They can have a Central Auditory Processing Delay 鈥 they may keep saying 鈥渨hat?鈥 Despite often excellent (over-sensitive 鈥 they can hear you talking the other end of a longish garden) hearing, processing can take time. Some AS people will not seem to have taken on board what you have said, but a complete answer may follow - and take you by surprise.
They may also find the pace of talk on the radio or TV too fast. Use Teletext subtitles where possible on TV. They often cannot follow the plot in films 鈥 the speed of conversation seems too fast and they miss some of the meanings and cannot keep up, and they cannot understand implied meaning. They might constantly ask what is going on, and you may need to give a running commentary. They may not appreciate your need to listen in order to tell them what is going on either, and not allow you to listen! Record everything!
Some say that the difference between Autism and Aspergers is that a
鈥渃lassicly autistic鈥 person does not need social contact, except to fulfil their needs, but those with AS want friends, but through no fault of their own lack the skills and ability to sustain relationships. This has terrible consequences for them.
Girls present differently from boys. This has made the diagnosis of girls
difficult. This may be why the ratio of boys to girls appears to be higher. Girls鈥 brains are wired differently from boys in any case. Girls are said to usually have more social ability, so some say girls with AS are actually therefore more severely affected than the boys. Those with AS may present very differently depending on their individual personality, and whether they are male or female. They are as individual as you or I, but with common autistic characteristics. They face many of the very same problems, as do their families.
Some Aspies, of either sex, are quiet, almost silent, some are very loud and hyper. Look at their clenched hands, many of them are on a daily 鈥渨hite-knuckle鈥 ride, dealing with life situations and other people. A lot also depends on situation and mood. They suffer from chronic (ongoing and ever-present) anxiety.
They have an inability to read body language, gesture and expression. You may give them a perfectly innocent look, but they think you are giving them 鈥渢he evils鈥. The rest of us take these skills for granted 鈥 we just acquire them as we develop, but they do not. They need to be taught these things literally, with explanations. 鈥. Again, parents of AS kids have to be their child鈥檚 鈥淚nterpreter on the World鈥.
Imagine feeling new to a foreign or alien land nearly every day of your life. Imagine not being able to understand everything in a conversation, imagine not being able to understand gesture, expression. How do you judge mood, intent or motive etc?
How do you think would being someone with Aspergers syndrome, and not getting any support from their school would affect YOUR long-term mental health?
How would coping with a child with Aspergers plus having to fight LEA departments, DSS, schools, etc for every little thing would affect a parent or carer鈥檚 health/ mental health?
How does being made to feel that e.g.: an LEA saving money is more important than your child鈥檚 well-being, education or future make you feel? When parents get upset, this is why. It is like this for them all the way.
Autism is a developmental delay. It takes Aspies years to learn how to cope better. They do become more understanding and reflective as they grow older but this can be a slow process.
There are other conditions that can be present at the same time, for example
Dyslexia, Dyspraxia (which includes both physical and language difficulties,) Tourettes Syndrome, Obsessive Compulsive Disorder, Anorexia, or Epilepsy.
Many are gluten or casein intolerant. There can be mild to very severe stomach problems. They may also have the typically autistic problems with the appearance, texture, smell or taste of different foods. So those with the condition may appear to be fussy / faddy eaters. It鈥檚 a genuine aversion / fear. E.g. An Aspie child may screams if they see the texture of rice, or smell curry.
It鈥檚 as if the wiring of their senses is crossed over sometimes.
Someone with Asperger鈥檚 syndrome may also have learning difficulties. However
often they are as bright or brighter than you or me.
The difficulties and characteristics of someone with Aspergers to a greater or lesser extent combine and compound all at the same time to actively influence the person鈥檚 state of mind and therefore behaviour, and make their life difficult. A panic attack or 鈥渕eltdown鈥 will result from various contributing difficulties.
An individual set of fears and phobias. Spiders, flies, germs, mud, rain, the London
Underground, their school peers, crowds, etc. E.g.: Sell-by dates on food expiring and a misunderstanding of how freezers preserve things - (the fridge regularly gets cleared out.)
Parents attempts to reassure or comfort with their own views, points or arguments may go unheeded. However if a parent can find an 鈥渆xpert鈥 鈥渁uthoritative鈥 set-in-stone-almost view/knowledge/fact from TV, internet or printed in books to back what they are trying to get across to their child, this can help dispel or lessen the fear.
Panic attacks (misunderstood as 鈥渢antrums鈥). These manifest in screaming, shouting, self-harming, throwing things, banging doors etc. Sometimes for what would seem to most people to be a very small trigger. E.g.: a spider, or a fly. Someone who is obsessive-compulsive about germs 鈥 if their coat brushes the floor it is immediately seen as 鈥渃ontaminated鈥 鈥 it will not be worn after that even on a cold day.
Sometimes this does not seem to add up 鈥 E.g.: you visit an Aspie鈥檚 home. You might have to take your shoes off at the front door, and check if you are allowed to sit on the sofa 鈥 (that鈥檚 if thy have considered that someone else might want somewhere to sit). You may be allowed to use the loo, but are not allowed to touch e.g. the soap or the left hand tap. Make sure you check which towel you are able to use without causing them a panic attack. Their home may even be quite dirty, as it is hard for some to cope with looking after themselves (because they may have sensory problems, or phobias) yet you are not allowed e.g. to touch a particular tap. So the possibility of contact with your germs cause them fear and panic, yet you cannot fail to notice that their bathroom is very dirty, the floors are dusty, and there are things all over the floor.
Panic attacks can occur for any number of reasons. Many of which will be invisible / a surprise to you. In an older Aspie, the arrival of a bill, a general final reminder / threatening letter or an update form from the DSS will trigger off a big panic.
(Why don鈥檛 these officious people realise the panic they cause with their threats to vulnerable people who might take it absolutely literally?)
Organisation is hard for them. Coping with more than a couple of things at once, sets them into a spin. However hard they try. They are already coping with their inner self, senses and perceptions. Other people do not understand this.
They have a tendency to feel overloaded and panicked with tasks, especially if there are more than a few to complete, and especially if they do not fully understand what they have to do. (HOMEWORK 鈥 aaarrrggghhh!!!!!!!)
The effect of their 鈥渆xplosions鈥 on the family 鈥 the family lives in a constant treading-on eggshells 鈥淎ction Stations鈥 mode. They never get used to these outbursts, and in fact it get worse, one gets less able to cope. In your mind you say 鈥渓et it go, they can鈥檛 help it鈥, but your body responds on an instinctive human 鈥渟tate of alarm鈥 level 鈥 shock / alarm / adrenaline / heart beats fast / stomach feels tight etc, and after a while this takes a toll on the carer in stress, weariness, and illness. It is everyday and relentless. It is made worse by being totally unsupported by and having to fight the LEA. It is not the AS child鈥檚 fault. They do not do it deliberately. You have to let it go, think how much they are suffering, and genuinely unknowing about how it affects you and start afresh with them after each episode. It is like being a prisoner, or being tied down with a multitude of strings like Gulliver. You have to live life a certain way. There are things you just cannot do as a family. There is no respite. Basically you just become a total everyday nervous wreck, just trying to cope.
It is important to realise that Aspies do not know the effect on their carer. This therefore also means un-tempered outbursts, and little or no self-restraint when in a panic attack.
You have to admire how well they can cope in school in 鈥淕uest Mode鈥, keeping their lid on when they are desperately panicking inside.)
They lack of empathy or 鈥渢heory of mind鈥. They may be seen as rude, demanding,
deliberately interrupting, self-opinionated, impatient, inconsiderate, controlling, selfish, etc, but they do not know the effect of their words or actions on others, they do not always understand the inner worlds of others, and that others may have their own motives. They have trouble thinking of what others motives or intentions might be 鈥 stranger danger. This can make them appear na茂ve, and it certainly makes them vulnerable.
They appear controlling because they cannot cope with the unexpected too well, and because they have their own way of doing things and cannot see your own way as valid too. They do not know and cannot imagine the likely thoughts, feelings, experiences of others. They can ask 鈥渋mpossible questions鈥, assuming you will know about the most unlikely of subjects. They may also assume that you know what they might be thinking.
They have problems with the concept of time. It makes it appear that they are impatient and demanding. Things need to be done exactly on time, or they get very upset. They can be very precise about times, or almost have to make an appointment with themselves to have a shower, etc. A combination of this with the above means that their carer might be ill, but if they want something done, it has to be right now, there is no allowance for your point of view or state of health. They cannot help this. They cannot show empathy because they do not have 鈥渢he software for empathy.鈥 You must never take it personally, or blame them, as they cannot help it and it is not intentional behaviour.
Changes, even what we might percieve to be positive or beneficial changes can be profoundly unsettling. They often hate their things being touched or moved. They find it very hard to cope with the unexpected 鈥 such as a train being cancelled, a change of platform. Other people on a train or bus. They may panic and get highly agitated and upset.
They can misunderstand social rules and conventions, and in conversations etc: E.g.
queuing systems in shops. Other people may think them rude and at worst selfish, and the AS young person is left with feelings of rejection. This leads to frustration, anger, disaffection, lack of confidence and independence, self-harm, suicidal thoughts. They think they must be horrible to suffer such continual rejection.
Other people misunderstand or misjudge them in turn. The resulting social
isolation, rejection and teasing from others makes them even more dependent on parents and siblings for understanding, companionship and support, going out, travelling etc. Parents / carers have to be their interpreters / minders and 鈥渟orter-outerers鈥 on the rest of the world.
They can develop phobias / fears at any time. E.g.: About revisiting the scene of past meltdowns or panic attacks, or about seeing school-age peers in the High Street so you have to walk via the back streets, and avoid school 鈥渉ome times鈥.
They can also lose phobias after a while, an idea, reason or contrary argument suddenly clicks in.
Mood can change very suddenly. Sometimes no amount of talk to try and calm them will solve the problem especially if it is based on a current obsession or phobia.
They have a tendency to get energy surges and go 鈥渉yper鈥 and need to go for a
walk, walk in circles, hit or bang something, throw something, etc. Many like the trampoline, or visits to the gym, or yoga classes to calm themselves down. Some like fairy lights, lava lamps and other forms of gentle lighting to calm down to.
Some deliberately drink cola or eat chocolate to make themselves hyper, as they enjoy this 鈥渉igh鈥 state.
They tend to have a current overriding or troubling obsession, or obsessions, or an obsessive way of thinking.
They tend to have a distorted sense of perspective around what is important / and priorities. Distorted sense of value of money. They sometimes cannot see the wood for trees / the main point, or find it hard to concentrate on the main point. They can get lost in detail. Panic. This is allied to a seeming lack of common sense, naivety, vulnerability, and immaturity. Some experts say autism is a life long developmental delay. Yet conversely they can have a seeming maturity and ability beyond years in other ways. As they get older they can become very wise and observant and seem much more 鈥渄own-to-earth鈥.
They cannot understand implied / suggested meaning, and need you to use simple direct uncomplicated language, but do not talk down to them, they will know this and be upset. They take things very literally. The way jokes operate /work has to be taught literally.
They may appear to be very good readers, (super readers or Hyperlexic,) but not understand the meaning of what they are reading.
They often 鈥渢une out鈥 into their own world. They often prefer to be in their own world than the real world. They can control their inner world.
Especially for younger Aspies - Difficulty crossing roads 鈥 they may be unable to read traffic patterns quickly enough. The danger is they may get impatient waiting for traffic to clear and just run for it.
Even adult Aspies can have great difficulty understanding and remembering directions, finding their way home. This may make them panic.
They can have unrealistic expectations of themselves, and their own coping ability in situations. They may take on things that their parents / carers know will be too much for them. Parents have to wait and see how they cope, be there (even hiding or at a distance, just in case) and afterwards ask them how it went for them. Then parents have to be willing to change / adjust provision / support etc, based on the reality / experience / what actually happens.
Those with AS usually desperately need their own space. Living with others can
prove to be utter HELL for them, and it adversely affects their mental health. They live by their own rules and ways of doing things, which can clash BIG TIME with other people.
They can calm down a lot when they eventually have their own space. It reduces the autistic reactive behaviours.
Those with Aspergers usually have a limited range of facial expressions. Usually their everyday face is plain, neutral, passive, set, mask-like, even smooth, immature or child-like and gives little of what they are feeling inside away.
Inner turmoil / feelings are hidden. Their difficulties are hidden.
If they are stressed, angry, about to have a panic attack, their neutral face can become even more set and appear 鈥渄etermined鈥. It has been described as thunderous. This is a misunderstanding. They are panicking.
This makes it hard for other people to really judge them properly, because only extremes seem to register. Teachers may think a child is coping and calm and content when 鈥渋n neutral鈥. This is highly misleading.
When they do smile it may light up their face extraordinarily and be in sharp contrast. It can be sudden, like the sun coming out, and might transform their faces.
鈥淕UEST MODE鈥 is where a person with AS appears to be a 鈥渕odel pupil鈥 or
鈥淒r Jekyl鈥 at school, and throws what are misunderstood to be 鈥渢antrums鈥 - is 鈥淢r Hyde鈥, at home.
Parents may not be believed, as the behaviour they witness at home will seem - when described to others - to be far-fetched, bizarre etc. The parent may be seen as fussy, or even suspected of being attention-seeking. What parents are actually (desperately) seeking is help to cope with their child鈥檚 perplexing difficulties , but they are often NOT getting ANY help.
It is so important for parents to feel that school staff believe them, and are taking them seriously.
School staff should realise they only see one side of what the child is like, and they do not see the turmoil and anxiety within the child, or what a lonely and desperate struggle it is for parents coping with this.
If it is hard for adult carers to describe and get help for, think how hard it is for the child with language / communication / social difficulties to describe how they feel, what is bothering them and why.
PARENTS HAVE TO COPE WITH: Their child鈥檚 behaviour, and all that entails, every day, rarely with any support.
Fighting the education system, (often via Tribunal).
Endless form-filling and 鈥榩hone calls, e.g. for DSS benefits (another Tribunal to attend for this, most probably.) (DLA forms are not written to cater for those with Aspergers / autism.)
Endless appointments with SENCOs, Teachers, Head Teachers, Educational Psychologists, (Annual Reviews etc.) Child Psychiatrists, Chiropodists (because of the dyspraxic tendencies that often accompany AS) , Community Paediatricians, Speech Therapists (if they are lucky).
However despite the long awaited, many appointments they rarely or never obtain support. E.g.: The local Community Paediatrician may be willing to refer a child for help 鈥 but there is no one to refer the child to.
Parents have to also cope with extreme lack of money, if they are unable to work because of all this.
Their energies and focus have of necessity to go on one child 鈥 at the expense of siblings, especially single parents.
Someone with AS and their siblings and parents cannot lead anything like a normal life.
SIBLINGS:
Can sometimes resent their Asperger sister or brother for the amount of time parents / carers have to spend dealing with their Asperger child鈥檚 very different behaviour, and needs etc. This is a recognised problem. They have to cope with the behaviours in the home too.
SUPPORT IN SCHOOLS
I asked my own child what support would have helped at school, and what other points should be highlighted.
A mentor or counsellor who genuinely understands autism / Asperger鈥檚, and who
They can feel comfortable around.
Teachers and TAs to be informed about AS, and what it means. INSET (in-
service training) on AS is crucial.
Teachers and TAs not to shout. (Sensory overload.)
If someone with AS has had a tantrum or panic attack, they may feel
humiliated. They do not like behaving like this, they cannot help it. Do not blame them or make them feel awful. Do not hold a grudge. Start afresh with them each time, and tell them this. Tell them you know it is not their fault. Talk with them about it when the time is right, when they are calmer, more stable and upbeat.
A quiet place to chill out and de-stress alone. Not the computer room or library. They need to be alone, and quiet.
Teachers and TAs to use uncomplicated straightforward language, but teachers
and TAs must not to be patronising and talk down. It is infuriating and
humiliating.
Patience please! If an instruction needs to be repeated because it has not been
understood for the first or even second time by someone with AS, no sighing with impatience or muttering 鈥渇or goodness鈥 sake鈥, however demanding a day you have had. They have a processing delay. They aren鈥檛 stupid. They get embarrassed too.
No changes of plan, etc. without PLENTY of warning. AS individuals hate changes, and cannot cope with them, even positive changes. They need plenty of
warning, for the idea of the change to be absorbed and accepted.
Do things exactly when you say you will.
They may be able to read out and spell to an average or above average level,
but this doesn鈥檛 necessarily mean they understand what they are reading.
Help with writing stories and poems. AS youngsters often but not always have
problems with imagination. A TA or teacher can help by writing down on a separate piece of paper (not just talking 鈥 they might not understand) about a real situation first and asking them questions to get them started.
Flexibility about hours at school. To avoid stress / sensory overload.
No homework. School children with AS hate homework. It cause much heartache
and stress at home. The school of course does not see the havoc it causes. It either needs to be done at school under supervision with someone who can check their understanding of the questions / task / instructions or it would help hugely if the child were able to tape record the teachers lesson and homework instructions. Better still, none at all. Is homework absolutely necessary?
A proper anti-bullying policy to be in place, and enforced effectively.
The personal qualities of a TA or Teacher are most important 鈥 flexibility, understanding, willingness to learn about AS (or whatever SEN a child has), willingness to start over with a clean slate each day, the understanding not to take the child鈥檚 behaviour personally, and patience.
THE DEBATE RE: INCLUSION.
Mainstream school can be TORTURE for many with AS. LEAs still refuse to
acknowledge their difficulties. At this very moment I can guarantee with complete confidence that there are many unhappy, suicidal young people with Asperger Syndrome in mainstream schools. I KNOW from our own experience and from the number I have met either in person or on the internet.
There are some children with hidden disabilities who will NEVER be able to
manage in mainstream. Many Special Schools have been closed over the past few years.
The Government says that every child should have the 鈥渞ight to be included in
mainstream schools鈥. This was an enforced 鈥渞ight鈥. With this 鈥渞ight鈥 there was no choice.
THE DIFFICULTY IN OBTAINING A DIAGNOSIS, THE DEVASTATING CONSEQUENCES OF THIS, AND THE DEBATE RE: 鈥淟ABELLING鈥.
Psychiatrists and others still seem to object to diagnosis (they call it,
emotively, 鈥渓abelling鈥 probably to make parents feel guilty, and stop pushing for support, which costs money) on the grounds of the child鈥檚 鈥減rivacy鈥. For whose
benefit do they say this? Do GPs do this re cancer, diabetes etc? If they do diagnose they still tend to downplay it saying it is: 鈥淢ild Aspergers鈥, 鈥淯nusual Presentation鈥, 鈥淏orderline Aspergers鈥, 鈥渁t cut-off point for Aspergers鈥 etc.
(Do not forget, girls present differently.)
There is more than one set of diagnostic criteria. These can contradict. Exact
criteria are still under discussion. E.g.: 鈥淓xperts鈥 still disagree over whether or not there can be an actual language delay and Aspergers. Their early language development is usually said to be untypical though. What are Aspies supposed to do while they wait for 鈥渆xperts鈥 and 鈥減rofessionals鈥 to argue it all out?
It is essential for someone with Asperger鈥檚 Syndrome to get a proper diagnosis.
Diagnosis is not a 鈥渓abel鈥, it is a 鈥渉andle鈥, or a 鈥渒ey鈥. It is essential for self-knowledge, and for the seeking of help and support. A GP can make a referral.
Asperger鈥檚 Syndrome is invisible. It is also extremely subtle in that it is very
hard to find the terms to describe, as it is foreign territory to many. Parents with no experience of autism whose child is not developing normally and is behaving in seemingly bizarre and contradictory ways are hard stretched to be able to pin down what the difficulty is and describe it to professionals. This, sad to say, seems to suit the agenda of those professionals who are 鈥済atekeepers鈥 on funds.
A diagnosis allows parents to find the means to describe and accept their child鈥檚
hidden disability, and allow them to speak with professionals in common terms, in order to attempt to get support, monitor progress, and deal with any problems in an analytical and precise way.
Diagnosis brings huge relief, especially to youngsters who feel as if they are
fated to fail at school and with relationships, and to undiagnosed adults who could never explain what kept going wrong. A diagnosis means they need not blame themselves any more. They can say: 鈥淚 thought I was the only one鈥, and 鈥淚 thought I was horrible鈥. They may also suspect that they must look horrible too in some way, because of the rejection, and get a phobia about seeing themselves in a mirror. They feel different, alien.
They also feel fated to 鈥渇ail鈥 at school, (because of negligible support).
Lack of correct diagnosis brings the danger of mis-diagnosis e.g.: schizophrenia. Proper diagnosis also checks for / eliminates other conditions, and prevents tragic lives, tragic misunderstandings. (Some girls are diagnosed with Anorexia or Obsessive Compulsive Disorder before they are finally correctly diagnosed with Asperger鈥檚 Syndrome.) A diagnosis of AS can rule out other disorders or put them in context.
鈥淎sperger United鈥, a magazine produced for AS people by the NAS, has printed several accounts from adults with AS who were not diagnosed till much later in life. It is very telling that they feel hugely relieved at being able to understand at last why their lives have gone the way they have.
Should such people - AS BRIGHT AS YOU OR I, but at a HUGE disadvantage in the world in many ways - be denied self-knowledge if the means is available?
Bookshops have huge sections on Self Improvement, Self Understanding (to the point of self-indulgence some might say,) etc. Yet Aspies are routinely denied diagnosis 鈥 the fundamental and essential knowledge about themselves.
They also need to know they are not alone with this. They can feel very different. Very isolated and lonely.
Quoting local support group Newsletter:
"Unbelievably, over a third of 鈥.鈥檚 members' AS children have NOT received a diagnosis yet鈥 ". Is this right?
THE DISAFFECTION OF AS PUPILS AND THEIR PARENTS.
Ordinary law-abiding people (AS pupils and parents) become disaffected from an
indifferent, inflexible one-size-fits-all, round-peg only, conveyor belt Education system that cannot deal with square-pegs at all, and disaffected from Local and National Government, Health Service, etc. They also soon begin to mistrust individual professionals who act as gatekeepers on funds. The education system make 鈥渞ebels鈥 of ordinary people. We feel alienated ourselves from the uncaring indifferent system.
More and more parents, especially those with children with special needs, are finding that the education system is failing or does not cater for their children.
Parents are thus forced into considering home education or setting up their own schools.
Including months /years out of school during juniors and seniors, time in an integration unit, and time in an MLD school, an Asperger child can miss out on YEARS of education to their level. Is this right or fair?
They have done nothing wrong, they have just been born Aspie. There is NO suitable provision for those with Aspergers.
Specialist Asperger Units attached to mainstream schools, run along the lines of current language units would be a good compromise. Most people think language units are where children are taught French or German, but they are places for children with autism spectrum disorders / speech and language disorders, (such as semantic pragmatic disorder), where there are small classes, and regular surgically precise speech therapy intervention. They have to be taught gesture and expression and social skills, to be able to cope with other people.) A child with Aspergers should be able to stay in such a place all their school life, and not pushed out ASAP to sink or swim in mainstream.
In the meantime, till this happens, language unit use could be extended, or adult education classes could be extended re their age limit to include senior school aged young people with AS. Adult Ed. classes are usually quiet with no discipline problems, so AS youngster are less likely to get sensory overload, phobias etc. about the situation. AS young people get on better with those younger than themselves or adults. They may be phobic about their peers, as they often have had a negative experience at their hands, in mainstream school.
Most Aspergers youngsters are less likely to mess about and waste time than their peers. They WANT to learn. They will have probably had such a hard time in mainstream, they will NOT waste this opportunity.
The choice for our Aspie children is mainstream, nothing, or an MLD school, where they do not really belong.
Where an Asperger child has had to have time 鈥 often years - out of school, cannot access an education to their level of ability at the usual time for a youngster, and thus has a severely delayed or compromised education, (having to leave an MLD school at 16, not having had the opportunity to take GCSEs there, and then have to travel out of area for GCSEs), the usual rigid criteria for support, funding, transport distances, and the timings of these, age limits etc should not be rigidly applied.
Why is the term 鈥渆xception鈥 then used, when parents appeal against decisions, as if the LEA is doing the child a favour, and yet again making the child and their parents feel different, rebels, and 鈥渙n the outside鈥 of society? Shouldn鈥檛 the LEA decision-makers examine the child鈥檚 (lack of) education history and acknowledge the LEAs own huge and damaging responsibility / part in it, and try to improve things for all Aspies?
Each set of parents of a child with Aspergers are treated as if they are bothersome exceptions, when the decision-makers should admit that all parents of children with AS / SENs have the very same problems.
If the system has failed a child / young person, the parent should not have to re-explain the difficulties, problems and situation again and again and again.
SOME GENERAL DISABILITY / SEN ISSUES.
Having a disability or being a carer isolates them, and puts people firmly outside of
mainstream society. It profoundly complicates and compromises their lives.
Stresses makes carers ill. Fighting for the most minimal of support and for
their disabled child鈥檚 rights and dealing with their behaviours becomes the carer鈥檚 life and career. FORM FILLING 鈥 aaarrrggghhhh!!!!!!!!!!!!
The stark cruel reality is that a parent is more likely to be dismissed, censured, or threatened than supported. We feel desperate, low, ill, completely alone and misunderstood, we can feel world-weary, ill-understood, unsupported and mis-judged, and without any hope for much of the time.
Disability reduces life chances and opportunity.
Disability impoverishes families. If parents cannot work 鈥 it affects their fundamental quality of life, their ability to be independent, their pride, and later affects their pension situation etc. It affects their housing situation 鈥 e.g.: if unable to work cannot afford decent housing. Their housing situation is complicated by and linked with the support situation of the child.
Disability disables the whole family. It can break up marriages and jeopardises
other relationships. It makes social life and travel by family difficult if not impossible.
WHO WILL HELP US???????????????????????????????
Every Local Authority is required by law to fund a Parent Partnership Service to provide information and support on educational issues to parents of children with SEN. The service may be based within the local authority or may be out-sourced (usually to a local voluntary organisation), but must always be able to demonstrate that it acts independently and impartially.
The service is free to parents; can support parents in negotiations with the local authority and their child's school; can lead parents through the maze of paperwork that surrounds statutory assessment, applications to SENDIST, admissions appeals, exclusions appeals; set up panels and forums to enable parents to voice their opinion on local services; help parents establish support groups....
Some services will provide supporters to help parents prepare SENDIST cases, and will be able to help with presentation of the case on the day.
Chris H - 190 - It sounds as though you may work somewhere within the SEN field and the above is what you genuinely believe. I hope you are able to demonstrate that this actually is the practice in many Councils. However, I can assure you this is not what happens in reality in my LA. Its very much a case of "that is what it says on paper". The reality is something else. This is another area where Council's can"fray the edges". If you are unfortunate to live in a LA where this occurs, what would you suggest a parent then does?
If you feel you would like some evidence of how it doesn't work here, please contact me through PM and I will be only too happy to demonstrate the recent past.
We have just learned that our LEA have lied to us by saying that the support available is strictly limited by their own banding system of funding, (I found out this would be illegal).
The SEN officer told the same lie to a key contributor to the statement, telling her what she could and couldn't recommend. Therefore in her advice she recommended much less support that she had felt my son needed.
No conflict of interest then, Lord Adonis?
Following on from 'mad as' (192): This is the main reason why last year the House of Commons Education and Skills Committee recommended that: 鈥榯he link must be broken between assessment and funding of provision鈥, rightly identifying what the Committee called an 鈥榓n inbuilt conflict of interest鈥. This conflict impacts not just on parents and children. Special educational needs professionals also suffer, because of the pressure Local Authorities put on them as employees not to record in their assessment advice their full and honest opinions on children鈥檚 needs and the provision required to meet them. Some job!
Although the Government initially rejected the recommendation, the Committee Chair, Barry Sheerman, managed this January to persuade the Minister to reconsider it. In return, Sheerman agreed that his Committee would come up with some practical suggestions on how the separation of duties could be achieved, without the need for the establishment of a new agency. In turn, the Committee issued a press release asking for ideas on how separation can be achieved.
The deadline for submissions to the Select Committee is June 25th. There is no guarantee that the Select Committee will chose any particular proposals to forward to the Government; and no guarantee that the Government will accept any particular proposals put to the by the Committee. But if it were possible for a group of parents and professionals (a large group, hopefully!) to agree a particular set of proposals and send these to the Select Committee, then there is at least a chance that this might influence the Committee, and the Government in due course.
I am posting this in the hope that as many parents and professionals as possible can come to an agreement on what changes might work, and send these to the Select Committee. This is my suggested list of changes, for discussion.
The Government have made it clear that are not asking for proposals which would involve the creation of a new public body or quango. So, of the existing bodies, I believe the most appropriate to perform the assessment of needs function would be the Department for Education and Skills. It would need to establish a panel of assessors (including educational psychologists, speech therapists, occupational therapists, specialist teachers, etc) and a team of statement writers, to analyse professional advice and translate it into the legal format of the Statement. The Department has the advantage of being democratically accountable, plus it has legal powers of enforcement and so could ensure (through the courts if necessary) that its independent assessments and statements would be honoured by Local Authorities.
Other bodies have been suggested as repositories for the assessment function (SENDIST and OFSTED, for example), but they lack formal accountability and legal powers of enforcement. It has also been suggested that Local Authorities could themselves establish regional panels of professionals for assessment and statement writing, which would guarantee independence by ensuring that professionals would not become involved in assessing children for whom their employer is responsible. But again, problems of accountability and enforcement arise. As well as the suspicion of deals being struck between Authorities (鈥榊ou gag your professionals when they鈥檙e assessing our children and we鈥檒l gag ours vice versa鈥).
Using the Department, an already existing body with already existing accountability and enforcement powers, would remove the need for wholesale change to the legal framework. But there are some small changes of detail to the law which would be needed if the separation of duties were to produce the desired result - children actually receiving the provision required to meet their needs.
First, the Regulations setting out the content of professional advice for assessment should be amended to make it absolutely clear that advice must describe the child鈥檚 needs and both the type and the amount of provision required to meet them. The drafters of statements cannot hope to produce honest and accurate documents unless they are informed by professional opinion on the amount of special educational provision a child鈥檚 needs call for. And parents have a right to expect to be told the professionals鈥 opinions on the amount of extra help their children need.
Second, the law setting out the content of statements should be amended in order that Part 3 specifies the type and quantifies the amount of help to be provided. All statements should unambiguously quantify the special educational provision which a child requires. Regardless of who has written it, a vague statement cannot protect the level of provision a child needs. The separation of duties will be an empty gesture unless the law covering the content of statements is tightened up.
Third, the Regulations covering the procedure for Annual Review should be amended in order to require professionals contributing to statement reviews to set out their opinion on whether the amount of provision specified in a statement remains appropriate or whether it needs amending.
Fourth, obviously a change in the law would be needed to switch the decision to assess a child from Local Authorities to the DfES, but in the interests of swift intervention, an amendment is needed to ensure that where both school and parents make a request for assessment, assessment is automatic, and never refused.
To summarise: I am suggesting that the Department for Education and Skills undertakes assessment of children鈥檚 needs and writes Statements of Special Educational Needs, which then must in law be honoured by Local Authorities.
Plus, I am suggesting 4 specific, small but crucial amendments to the existing law (the Education Act 1996 and the 2001 Regulations) to ensure that the benefits of separating the duties to assess and provide will be realised in practice.
I have also posted this for discussion on www.parentscentre.gov.uk/forum/messageview.cfm?catid=23&threadid=29285
For information:
The Select Committee has asked that submissions should arrive no later than noon on Monday 25 June 2007. A guide for written submissions to the Committee can be found at: Submissions should include at the beginning a short paragraph or set of bullet points setting out the main issues addressed in the memorandum. A copy of the submission should be sent by e-mail to edskillscom@parliament.uk with an additional paper copy to:
Education and Skills Select Committee, House of Commons, 7 Millbank, London SW1P 3JA. The Committee is not intending to take oral evidence on this subject.
I think those are excellent ideas. Another alternative would be for the current system for assessment to remain in place, but for the funding to come from central government.
At present there is a strong disincentive for LEA's to make good provision. Not only is it expensive, but there's the "double whammy" of encouraging more families of high support kids to move into that LA, putting additional pressure on local resources.
This system could end the current postcode lottery for provision. What do you think?
Have a look at:
This link is to Hansard. House of Commons PM's Question Time. 23.05.07
Question from Mr Simon Burns (W Chelmsford) (Con) to the PM, re Dyslexics in Chelmsford Prison.
Every Child Matters?
Here is how it is being presented to us:
(Also look up CYPSYP, and the Common Assessment Framework.)
WHY is this new arrangement for the delivery of services being introduced?
WHO was asked if they wanted this? Were YOU consulted?
WHAT examples of good practice was it based on?
WhAT will be the knock on effects, and the long term implications of this?
Is is because less money is being given by central government to LAs, so the responsibility for delivery of services is being handed over to the voluntary sector?
WHAT does it mean for children with special needs?
I have just read all the comments on SEN and the provision of education through the statementing process, and I cried at the scale of sheer frustration other parents have experienced in having to deal with a system that is unwieldy, unresponsive, beaurocratic, and to my mind abusive, when it comes to considering the needs of the child.
My daughter was excluded from her third secondary school last year. She has a statement of SEN only because I gave up work in order to appeal the LEAs decision not to assess. I won the Tribunal because the 'evidence was overwhelming' (chair of the Tribunal's comment). I also won it because I am articulate, have a pc and access to a photocopier. I also keep detailed records of all contact with the LEA, and I don't give up.
During this process I had countless sleepless nights and became increasingly depressed to the point where I needed anti-depressants to carry on.
My daughter has been out of school for the whole of this academic year - she is bright and was taking 8 GCSE's, no mean feat given her very patchy secondary school career. She has become increasingly depressed, has lost all sense of hope or motivation, is socially isolated, and severely doubts her capacity to make her way in the world.
There has been absolutely no help from the LEA, and no provision of education of any description. I have spent hours trying to find a school/college that was prepared to take a child on the autistic spectrum, who most of the time is bright and engaging, but like all children with ASD she has difficulties with social communication. Past schools have not wanted to deal with her being difficult, because it requires a different approach and understanding which takes time and effort, and can be frustrating in the short term when results are not instant.
I did find a college willing to take her, and asked the LEA to review her statement. Her case went to Panel and funding was turned down because it was deemed to be an inefficient use of local authority monies. They suggested she went to the mainstream VI form college. If this was the solution she would already have been there. I want my child educated and I want her to have a future, she needs to fulfill her potential, but she will not cope with that type of setting and will not go because of the level of anxiety she experiences.
It is high time that the whole system was reviewed - the assessment and review process needs to be carried out by independant assessors, made up of multidisciplinary professional who link up with parents, schools and child and adolescent mental health services.
At the moment information gathering for the LEA is largely the responsibility of the parent, as is finding appropriate education. There needs to be far more readily accessible and detailed information about the SEN process, a directory of schools in and out of the borough, local authority funded and independent, special and mainstream schools willing and able to take children with SEN.
There needs to be far more understanding and training of teachers particularly in relation to children on the autistic spectrum, many of whom could be educated ina mainstream setting given the necessary support. This would also help in the education of children deemed to be 'unteachable'
Why is that we persist in thinking that children must fit with the system. Every child matters and every child should have access to an education - not true at the moment.
How many children are there not on a school roll and not receiving education? How many of those have a diagnosed SEN, and how many should have been diagnosed but have nor been referred? How many of them actally want to be in school? What happens to them?
What are the financial implications for ensuring the there is a system that responds to children's special educational needs, mental well-being and social development, supports parents, and provides training, consultation and supervision to teachers.
At present the system works well as a financial gate-keeping mechanism. You have to be extraordinarily resilient and persistent to get what your child is entitled to.
Lord Adonis & SENs.
What he said in Hansard: 14.07.05.
"The House is indebted to the noble Lord, Lord Baker, for enabling us to have this debate. A civilised society is judged by the way in which it treats its most vulnerable members and the equal worth that it accords them with their peers. Many children with special needs and the parents who care for them are among the most vulnerable members of our society, as so many noble Lords have said in the debate. Our duty
to them is not merely one of care but to enable them to reach their full potential and to give them and their parents the educational choices required to achieve that potential. That is the aim of government policy. The noble Lord, Lord Baker, confessed to benign neglect in dealing with special educational needs when he was Secretary of State. Since he made an uncharacteristically one-sided speech鈥攊ndeed, almost a House of Commons speech鈥攊t is only fair for me to point out that when he was Secretary of State his policy in his own terms, given the policy that he now subscribes to, was not benign neglect but malign neglect. He presided over the closure of some 70 special schools, and the level of spending on special educational needs in real terms was significantly lower than that which we see today."
So what has this government / Lord Adonis done to remedy this "malign neglect" since then?
Has anyone noticed anything getting better for their children with special needs, under Lord Adonis / this government?
Well done PM team for continuing the SEN theme by introducing a debate on that rich source of confusion - diagnosis. I was a bit confused myself when the introduction to the piece appeared to be about an educational psychologist who was suggesting that children who couldn't read might actually be stupid. A quick websearch revealed that you were actually referring to Julian Elliott, who, as far as I know, doesn't think that at all. Have you been reading the Daily Mail?
Confusion over the causes of learning difficulties appears to be the root of all evil in the SEN world. Learning difficulties are variously attributed to:
medical conditions, with new syndromes being discovered (invented?) all the time
bad teaching
bad parenting
lack of intelligence
behavioural problems
depending on who's doing the hypothesising.
All these factors may affect learning of course, but usually very little evidence gets produced to support any of the models. We seem to be making needlessly complicated. Reading, writing, spelling, numeracy, language and social interaction may be 'basic' skills in educational terms, but cognitively they are all highly complex. A problem with any processing function required for a complex skill is going to cause difficulty with the skill itself. Minor auditory and visual information processing problems, or difficulties with working memory or spatial processing, can wreak havoc if they constitute a link in the chain which forms one of the 3R's.
The government's theory-in-use appears to be that all children are 'normal' unless diagnosed by a qualified professional as having one of the recognised developmental syndromes, and are therefore perfectly capable of learning to read, write and do arithmetic if only they, their parents and teachers pulled their socks up and put their noses to the grindstone.
My perception is that an awful lot of children have cognitive processing problems of one sort or another at some time during their school lives, and that most of the processing problems are commonplace. Unfortunately class teachers are generally not trained to recognise or address these problems nor do they have sufficient access to professionals who are able to do so. Consequently we are paying out huge sums of money for inappropriately trained people to do the wrong things with children. We should give Prof. Elliott a hearing. He's onto something.
If Asperger Syndrome children cannot access a diagnosis when young, what happens later? Will their hidden disability be picked up then?
'Fraid not.
There is nobody reliably trained in my local authority area to diagnose Asperger Syndrome in adults. The statutory bodies responsible acknowledge that there is a glaring gap in services, but it looks as if nothing is going to be done, at least not in the foreseeable future.
So, if an adult wants a diagnosis, there are only 2 real possibilities. The first is to apply for a private diagnosis where it might cost 拢500 per individual. It is disgraceful (and possibly discriminatory?) that Asperger adults have to pay for a diagnosis of AS, when a diagnosis of, e.g. schizophrenia, (which Aspergers is often confused with / misdiagnosed as) is available for free on the NHS. Aspergers can often appear to the uninitiated / untrained much like schizophrenia.
The positive point re private diagnosis is that you do not need a referral from a consultant 鈥 you can self-refer, however a diagnosis obtained from a private diagnostician is apparently not currently being accepted by the DLA (Disability Living Allowance people) etc, which means that a privately diagnosed person cannot claim disability benefits.
The only other route for diagnosis available is tedious and fraught with difficulties: the adult has to go to their GP and ask to be referred for diagnosis to the local Primary Care Trust, who then debate whether they can afford to send the person out of the area county for diagnosis. I know of 6 adults who have already gone down this route and have been refused funding.
So where do they go now? Apparently nowhere 鈥 they remain in limbo, undiagnosed and thus unable to claim appropriate benefits. It鈥檚 an utter disgrace, and for them a tragedy.
The worst case scenario is that the GP refuses to approach the PCT and instead refers the adult to a local Consultant Psychiatrist (or similar) for diagnosis, who knows nothing about AS and will probably give a misdiagnosis of social phobia, bi-polar disorder, personality disorder etc. This is common.
The chances of getting onto a local mental health team are almost impossible. Eligibility criteria is now set at such high levels that you have to be genuinely suicidal (or in severe danger of harming yourself or others) before they鈥檒l even look at you. And by that time, it鈥檚 often too late. The psychological damage has been done. Even then, the service offered by Mental Health teams to adults with AS is non-existent because they admit they have no training in how to deal with those with Asperger Syndrome at the intellectually high-functioning end.
If you have some form of recognised learning disability, you can access some sort of general service, although it鈥檚 not appropriate for Aspies, as some have reported back - things like Day Centres or Drop-Ins, with others who are referred from Mencap, Mind etc.
The same thing happens all over the country.
The Aspie community need support, but primarily diagnosis.
Frighteningly for our children and adults with AS, apparently the government is considering that autism should be downgraded to a lower level of Disability Living Allowance. This means that children who receive it will go down from middle to lower rate, and at lower rate, they are no longer eligible to claim Incapacity Benefit! Parents might then no longer be able to claim Carers Allowance? This will have the most profound effects on income and on family life for those who are often already at breaking point.
Is this true? Is this right?
Please could the PM team check the situation for us? Highlight it for us? Please.
" 28 Nov 2006 : Column 8WH
In my own county of Bedfordshire there are no specialist speech and language units. I understand that in the neighbouring county of Hertfordshire there are eight stand-alone speech and language units, whereas Essex county council recently closed all its speech and language units so all the provision is in mainstream schools. There is a patchwork of provision, differing according to local authority area. I am not saying that mainstream provision can never work, but it should be of concern that provision is so different in neighbouring local authorities. There is a patchwork lottery, no doubt for historic reasons, or reflecting the local taxpayer base and other issues. That is a matter of concern. "
For information:
"Spectrum - epetition reply14 June 2007
We received a petition asking:
"We the undersigned petition the Prime Minister to Recognise that many children with special needs are not getting the vital services that they require and that PCT's and LEA's should be held accountable for not providing the support these children need to reach their full potential!"
Details of petition:
"In my personal situation Speech and Language therapy has been taken away from children in Year 1 and above, in my local area ( west-norfolk )my son is 6 years old he has autism and is non-verbal- Speech and language therapy is VITAL for my son, he needs to form an effective communication system as do hundreds of children in Norfolk and i dare say all over the country! We need to make PCT's and LEA's become accountable for not providing our children with these services and make sure that our children get the provisions that they so deserve!! I am appaled by the treatment of people with special needs and desperatly want things to change!"
Read the petition
Petitions home page
Read the Government's responseThe Special Educational Needs (SEN) Code of Practice, which provides statutory guidance for schools and local authorities and which they must have regard to, sets out clearly a local authority's responsibility about provision of speech and language therapy.
As communication is so fundamental in learning and progression, the Code recommends that addressing speech and language impairment should normally be recorded as educational provision in a child's statement of SEN, unless there are exceptional reasons for not doing so.
We expect schools, local authorities and primary care trusts (PCTs) to co-operate closely in meeting the needs of children with communication difficulties. The prime responsibility for the provision of speech and language therapy rests with the local PCT. However, where the PCT is unable to provide speech and language therapy for a child whose statement of SEN specifies it as educational provision the ultimate responsibility for ensuring that provision is made rests with the local authority. This is because the Education Act 1996 says that where a child has a statement of SEN, the local authority "shall arrange that the special educational provision specified in the statement is made for the child" (unless the child's parents have made other suitable arrangements).
If therefore the PCT is unable to provide speech and language therapy the local authority has a statutory duty to ensure the necessary provision is made, this may be, for example, by employing or contracting their own speech and language therapists.
In May the children's communication charity I CAN, the Department for Education and Skills (DfES) and the Department of Health (DH) announced a strategic partnership to roll-out I CAN's Early Talk programme to up to 200 Sure Start Children's Centres across England to improve the speech, language and communication skills of children in the early years. I CAN's Early Talk programme is a unique, evidence-based programme designed to aid the communication development of all pre-school children through integrated therapy and educational approaches.
The DfES is also supporting a new Inclusion Development Programme which aims to build the confidence and competence of teachers and other staff in relation to areas of SEN and disability that causes most difficulties. In its first year (2007-08) the IDP will focus on speech, language and communication needs and dyslexia.
The IDP will operate via the National Strategies and involve close co-operation with specialist voluntary organisations, such as I CAN, and other interested parties to develop training materials, drawing on the best of what is already available, and cascading training down through local authorities to schools.
DfES is currently working closely with a range of organisations to develop a Communication Trust which will aim to raise the profile and awareness of communication disability, particularly in relation to children for whom speech and language is their primary disability. The Trust will look to promote and support the delivery of effective programmes to help develop the capacity of the education workforce to include and support such children."
By chance I was listening to Fridays PM (13th July) programme and heard some of the comments on Special Educational Needs. As a former Administrator of a private Consultancy on literacy difficulties I am used to talking to parents long before they get to the tribunal stage. There is a major deficiency in the SEN system as the assessments do NOT include one of the primary areas of difficulties in Learning. Parents will always take their child to an Optician to have their eyes checked, But they will not know that eye sight under the standard NHS test does NOT cover the Vision system which is used for doing anything at close distance such as reading, writing and spelling.
We all use our VISION system for close work but it is never tested for SEN assessments. Unfortunately 87% of all learning is done through the Vision system but is not known in educational circles. It is a differebt professional qualification
This professional information is all availble on the internet. Look under 'visionandlearning'.
I have recently helped a 46 year old man who has had three Dyslexia assessments in his life and had never heard about Vision. With suitable vision help he is now able to read accurately for the first time in his life. All the advice was given to him on the internet and he then viisted the right person.
Further information is available if required.
Yours - Henry Crowther
Mr Crowther - many thanks for your comment,
Our son was identified by an optician as having vision problems when he was 12 and it was recommended that he be referred to a specialist in London. Our local NHS was unable to assist, as funding was not available. We paid for a private assessment and provision. This cost us nearly 拢2000 not to mention time stress, and no understanding from the school to our child's needs. Our Son benefited greatly from this intervention.
In our child's case this was only one part of his problems. Most (if not all) of his other assessments were eventually identified and undertaken by us due to the refusal by the LA as to the severity of his needs.
There are many children who are not being assessed correctly for many disorders. These children do try hard. You may ask how do I know? I am a parent with a disabled child and I have seen how hard he tried to overcome his disabilities. He was not in a special school. He was misunderstood (I suggest deliberately by his state educators in the attempt to move the problem out of the school by means of exclusion to another bodies responsibility). The reason I believe this to be true is that I have attended many parent forums where the LA inform parents of what is available or not and why. Head teachers have told me that there were not the resources for our son. That he was not considered by them or the LA to be severe enough to be considered for an assessment. Because very limited support was put in place the problems got larger. When you read collectively the inputs to PM our experience is not unique.
Incredibly, seven years later and despite the promises of Every Child Matters, the Disability Discrimination Act and the strong focus by the Government on supported Inclusion and provision for children with SEN not a lot appears to have improved. At a local meeting by the LA only last week the Deputy Director for Education admitted that Schools/SENCOS/Teachers/Head Teachers were not trained enough in Special Needs and this needed to be addressed.
The LA is looking at providing better for children with SEN in the future and they stated they are using statistics from current Statements to do this. When questioned whether current Statements were accurate enough to base future provision for a County on, we were told that statistics would also be gathered from Schools. We were informed that schools are directed by the LA鈥檚 nationwide to tick only one box per child on what the school decides (without consistent of proper assessment of or knowledge across a county) is a child's prime difficulty. How can a teacher or other school-based person who is not an expert on all disabilities (some if not all which require proper expert assessment) decide what a child鈥檚 diagnosis or diagnoses is? Is it me, or is there something wrong here? It seems to me that matters are not going to improve for the children of this county and presumably the country, as the authorities will be basing their provision on incorrect data.
If the rest of the country is doing this, and our LA informed us that this is a Government directive to LA鈥檚 on how to collect the information, then the whole of the country鈥檚 children for the future are going to be disadvantaged. Good money will be wasted and the outcomes envisaged and promised will not be forthcoming. Another generation of our children鈥檚 lives will be blighted and no one will be held responsible. Is there anyone listening out there??
As the parent of a child with mild Asperger's Syndrome, and aprimary school SEN teaching assistant, I see the problem from different perspectives.
From the parental point of view, I wish my child could get more help with his problems in secondary school, (mostly social, and trying to make sure he isn't bullied), and from the teaching assistant point of view, I could just cry from seeing some of the children that we have, who are just the merest fraction away from being able to get funded help from our L.A.
When a huge percentage of the prisoners in our cells have learning difficulties, costing this country millions of pounds a year, where is the forethought in not investing NOW in helping these children, and preventing them becoming totally disaffected with the education system before they are even out of primary school?
((205) Couldn't agree with Carole more.)
I am in a whoopeee whoopeeee "way-to-go"!!! mood as my daughter has just passed 2 AS levels. If you knew all the trauma that went into achieving this - even into supporting her just staying on at college - and all the false starts at different places we've been through just to get to this stage, with no help from the school years education system, you would understand my massively whoopeee whoopeee mood.
(Yet her peers are well through/into university by now.)
This result is DESPITE the education system.
"Big respect" and pathetically grateful thanks from me to her current college, with it's wonderful learning support dept.
Our Asperger youngsters often have problems with understanding language, so just understanding what exam questions exactly want is a challenge. Even maths papers have questions that also in effect are testing language skills, so they are disadvantaged in taking these exams too.
Why should our young people be made to feel terrible when taking ("only") one or two GCSE or A level subjects at a time? They often just can't deal with pressure, as they are chronically anxious in any case, then have various other Aspie traits to deal with, (often all at once).
I find it amazing that even when a school KNOWS your child has had a diagnosis of a language disorder when young, and then this is updated to Aspergers, or similar, later, and remaining problems with language, they somehow still expect your child to do several exams at once, just like everyone else.
When your child can't cope and you have to say it's not a realistic or humane expectation for them, they will need to do one or two at a time, over time, it makes your child feel bad / a failure yet again.
The education system puts immense pressure on all children in any case. Our Aspie youngsters are often forced to do the same amount of work.
Anyway, today I am immensely proud, relieved and happy. Back to the fight again, sometime, (fighting over next years transport will be the next thing, as always) but not today!!!!!!!!
Celebrate whoo hooo!!!!!
Pat (206) : Whoo hooooo, indeed!
Fantastically well done to your daughter, and to everyone supporting her who made it possible for her to nail those exams.
We don't know each other ... but let me send you both a huge hug on behalf of the vast majority of posters on these SEN threads who understand only too well how much heartache and hard work goes into creating just one Whoo hooooo day.
Yeeeeee haaaaaaaaah!!!
Fifi xx
Thanks Fifi!!!
(I hope the Government takes into account just how many of us there are on this blog - who have votes, and who report very similar ongoing experiences from officialdom re when trying to get the right support for their children with SENs -neglect, lies & spin, corruption, bullying etc.
Not a pretty picture we have painted between us all - of the effect of Government SEN policy and local govt. implementation of this, is it?
Also I am sure that those on this blog represent a far far larger number of dissatisfied and disaffected voters.
From my own experience I know that just coping with a child with SENs, plus fighting non-stop to secure their rights (not to mention getting form-filling fatigue, and fighting ongoing feelings of despair) means you don't have time or energy left to for instance have a good old blog, or write to one's MP.)
But we might make time to vote ...
It's the same every time. My Aspie child's college transport application has been turned down.
It happens every year at the same time - just about a week before the start of term ... and I have to get my fighting gloves on yet again, and go through the same things yet again - as if I have never told them any of it before. Sigh.
It's part of procedure now. I think the LEA view is to turn children down and hope their parents will have so wearied of the ongoing battle that they will somehow accept it.
there is some evidence the government is involved in this as children with aen are not included in the human rights act.there is also some evidence for institutional child neglect involving the dfes,doh,leas and health authourities in an effort to conserve resources
Parents of children with speech & language difficulties - please take note:-
Review re provision for children with S & L communication difficulties
"I am very pleased to have been asked by Ed Balls and Alan Johnson to lead this review. It is the first major review in seven years for people with speech, language and communication needs and it provides an excellent opportunity to bolster support for vulnerable children and young people.
The remit of the Review is broad and challenging, as the Terms of Reference show. I am determined, with the help of expert advisors, to see and hear for myself what the present situation is and how we can improve the support available. I will be visiting speech, language and communication services across the country to learn what works, what the problems are and what people think should be done to facilitate effective early intervention.
I am delighted that Ed Balls and Alan Johnson are so interested in this review and will be updating them regularly on progress. I plan to submit an interim report by March 2008. Further work on the priority themes will then begin and I will hand in a final report by July 2008. This website will keep you informed of our progress.
I want to hear from service providers, commissioners, academics, charities, parents, children and young people themselves. People can write in confidence if they wish, they can share their thoughts through this site and, in some cases, will have the chance to participate in focus groups. The success of our efforts depends on all who have an interest in this field being prepared to give their views, evidence and proposals. I do hope you will feel able to help.
Doing more to help people who experience the often hidden disability of communication problems is both right in itself and says something very positive about this country鈥檚 political DNA. Over the next nine months, my task, which I am privileged to take on as an unpaid volunteer, is to formulate practical proposals for improved services. The litmus test of such proposals is that they tackle the problems and boost the prospects of the children and young people who need our help. I am determined to pass that test. "
John Bercow
"Get involved
You can give your views by responding to the call for evidence, or you can email comments, information or data to John Bercow at Bercow.Review@dcsf.gsi.gov.uk.
The Bercow Review is an independent review supported by officials from the Department for Children, Schools and Families and the Department of Health.
A review into speech and language provision
Tuesday 16 October 2007
John Bercow MP is seeking views on specialist provision for children and young people with speech, language and communications needs.
The review has been commissioned by the Children, Schools and Families Secretary, Ed Balls and Health Secretary, Alan Johnson.
It will make recommendations on how the very best provision can be mirrored in all areas, so every child and young person with speech and language difficulties gets support as early as possible. It will also advise on how local services can work closer together so children get the support they need, when they need it.
The review's website is now live and the final report will be published in summer 2008. The Government will then respond."
I can't help thinking the government has no business collecting information which it can't protect.
How dare they use terrorism as a justification for such wide-scale snooping.Who is going to protect us from the government?