Our son’s rare disease sparked a search for answers- and support

Tania writes:

I am often contacted by desperate parents searching for help with finding the special needs solutions for their children.

It’s something that Helen never imagined herself having to do. She had never had to worry about SEN support for her son Jake, until he became a teenager and his health began to deteriorate.

He has since been diagnosed with a rare disease, Kleine Levin Syndrome. From having a healthy 13 year old, Helen found herself searching for answers, support and a way through the jungle of health, social care and special needs services.

Here is her story….

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We never thought our world would be turned upside and we would suddenly be fighting for our son’s right to his education.  Our son Jake, was a healthy, happy 13 year old with predicted A grades at GCSE when he got sick.

He got sick slowly, in an unexpected way, it was so difficult to explain – but his behaviour was no longer normal.

kleineHe slept for a longer periods of time, he fell asleep in shopping centres, on woodland walks in the rain, every time we got in the car – and at the same time he lost his confidence, he did not know his address, what day it was, some days he could barely speak – yet nothing had happened to him, he had not had an accident or even a bad virus – but suddenly he was not the son we use to know. It was so much more than sleeping, but sleeping was the most obvious symptom and the easiest to talk about.

We were being told, don’t worry he is just a teenager – teenagers like to have lie-ins, sleep all day and barely grunt at you, and they can change into teenagers overnight! But teenagers still leave the house, can walk for two miles without having to sit down and sleep, teenagers can be woken and it is not like they are in a comatose state with pounding headaches and having hallucinations when awake, and although teenagers might choose to ignore you, our son just didn’t hear us some times.

We saw doctors, we saw neurologists, we visited CAMHS, we made our own private referral to London and we had the same response – it is very interesting. Who wants to be interesting? We wanted to know when our son would be back.

We noticed that despite seeing all these doctors and reading the reports about Jake’s condition, they were missing the point, they were not seeing everything we were seeing; the points we felt were key to his condition.

We wrote to our GP and our neurologist and told them in a detailed letter what they were missing – it was a hard letter to write, to describe everything our son could no longer do – but this letter struck gold, it was the best thing we ever did up to that point.

A week later we had an appointment with a paediatrician who, from our description and the tests he had had so far, suggested Jake  may have the rare neurological condition of Kleine Levin Syndrome.

We had never heard of KLS – we read up on it, Googled for information and learned that it was episodic and that the episode would end, but may repeat. Shortly after that, Jake was back, it was nearly Christmas and his last memory was the summer holiday. For a while, he was the bright young person who we had before – until it happened again.

It has happened a lot since. The episodes have been a variety of length from one to 118 days, with gaps in between episodes from 1 to 33 days – KLS affects Jake severely.

We went from 100% attendance to 30% at school and we realised that when unwell, Jake was cognitively unable to learn, he could barely write his name. Yet when he was well, he was a bright, able student who had just missed loads, with topics moving on at school so rapidly he could barely catch up.

In Year 9, we focused on just his core subjects, dropped the ones he was not continuing with and school agreed to half-days to reduce the stress, and for him to do catch-up work in the mornings. We muddled through, thinking it was all okay.

We’re in Year 10 now and KLS continues. Jake is still missing huge chunks of time and we think he is doing OK. But when his  first exams arrived,  Jake panicked because he realised he has not been taught what he needs to know to succeed and that to catch up involves him copying from books, working independently but on some days doing nothing as no one knows what work to give him because he has missed so much. We also asked the school to put in writing what would happen if he was ill for exams and missed them.

In all this time we have not been chased for school attendance as they have marked him as ill and school have looked to us for guidance – but we don’t know what the options are.

After having the exams and then having five weeks off for another episode, Jake returned to school to watch a video all day as they had no work planned and we saw “red” –  there has to be more help for him.

We discovered the Local Authority Inclusion Services, who might be able to help Jake have catch up education. They had not been told about us and could do nothing without medical records and a referral.

We sent them all his notes and they contacted school. At the same time we began researching education in more detail and although we had an IEP, we had no real support or action, so after broaching the idea with my paediatrician, she agreed that applying for Statutory Assessment might be a good idea.

We also approached local colleges to find out about his post-16 options and they had been in touch with school… and we found SPecial Needs Jungle and bought the book.

Two weeks after we got to this point, we were in shock; the Maths teacher rang us at home to ask if he can put Jake into exams early, so he has a chance to sit his GCSE’s twice, and he has had some 1:1 catch up in Maths.

His Science teachers wrote to us and invited him to attend a ‘catch up’ assessment day in the Easter holidays if he was well enough and the English team have delivered a copy of his curriculum, the books he needs and some research guides to my door at 4.45pm in the evening. We have also had our first meeting with our head teacher (we have dealt with the head of year and SEN department to this point), who is looking into offering us five hours of 1:1 support a week when Jake is well, looking at reducing his time-table further and offering us easier GCSE options.

All because suddenly we have asked for more support – we are still applying for a Statuary Assessment – we may only have four terms left, but Jake deserves the opportunity to achieve the best he can, and we know school were in the wrong, as otherwise the arrival of the Statuary Assessment notification would not have had the reaction it has had.

We have done a detailed report for the Local Authority, the form we received allowed for just a small paragraph, instead we have sent a lot of evidence of Jake’s condition and we can only hope they read it and  support us.

Kleine Levin Syndrome is hard to understand – if affects only around 1000 people world wide, most patients go undiagnosed for 7 years, and most grow out of the condition within 20 years, and go on to live a normal life, but in the mean time are robbed of their teens and twenties – have little or no qualifications and struggle to be understood…. we are hoping our case will be different.  To follow our story – then visit our parents guide to KLS – www.kleineLevinSyndrome.co.uk

Here is our video about out story:

Don’t rush SEN reform – get it right, not fast

I’ve just watched the Education Select Committee on SEN – the Next Steps and many of the concerns raised mirror the points I raised in my presentation at the Towards a Positive Future Conference.

Sarah Teather, in her part of the committee, said there will be a ‘slight delay’ in bringing the draft bill until the autumn. This will be followed by a ‘carry-over’ bill in Spring 2013.

But most of the trials are not planned to get started in earnest UNTIL the autumn. So I think the government is still jumping the gun. And I’m not the only one. The experts (yes, Ms Teather, experts) all share my view that legislation should be delayed. You can find the recording of the today Select Committee here. Having listened to Ms Teather, she seems to think the pathfinder trials are a lot further along than they are –  certainly in the SE7 group, to which Surrey belongs.

I’m including a portion of my talk below where I cover both where we’re up to in Surrey with the EHCP and why I think the apparent rush to legislation is foolhardy.

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The SEN Green paper of course, is still being developed. In fact we are only now edging closer to what an EHCP might look like. Who will be writing a child’s EHCP or supporting the parents through it – a so-called key worker –  has still to be decided.

This process is one that is supposed to be informed not just by the professionals and the politicians, but also by the voice of the parents. Parents are part of every pathfinder and every workstream from EHCP to complex needs to early intervention, looked after children and so on..

This is where the parent-carer forums come in. Our Surrey Forum,  Family Voice Surrey, is still quite new. We work with other parents on the committee to represent a strong voice for parents of SEN and disabled children. For the Surrey pathfinder, we are there, putting the parents’ voice forward, as other parent-carers forums do in the other pathfinder areas. We also sit on the high-level Local Change Board, giving us a voice at the very heart of the local authority’s decision-making process for SEN.

Surrey is part of what is called the South East 7,  SE7 group of pathfinder authorities that includes Kent, Medway, East Sussex, West Sussex, Brighton & Hove &  Hampshire

The pathfinders will all test some core elements of reform, including:

  • The single education, health and care plan from birth to 25 years old, focusing on whether outcomes for disabled children and their parents have been improved
  • personal budgets for parents so they can choose which services best suit the needs of their children  although no one will be forced to take control of their own budgets if they feel they can’t or don’t want to.
  • improved commissioning, particularly through links to health reforms – though it has to be said health are, in many areas, reluctant party-goers.
  • and how voluntary and community sector organisations will need to be involved in making the new system work
  • it will also look at the cost of the reform.

Crucially, the new process is also supposed to go from birth up to 25 years old. This is a huge change from the current system where parents of disabled 19 year olds face considerable difficulty in accessing appropriate support or education for them. It’s also anticipated, as I mentioned, that a key worker will support the parents through the process.

Another aspect being worked through is the ‘local offer’ which each LEA will need to draw up to set out to parents whose children do NOT have an EHCP what provision is available for them within the county to support their children’s needs.

It’s aimed at giving parents more information about the services and expertise available locally, for health, education and social care, and increasing their choice. At the moment, we don’t actually know in Surrey what will be in the local offer, it’s still at the development stages.

The principles are for it to be holistic, accessible and easy to understand for parents as well as transparent, sustained and sustainable  –  ie, continually updated – as well as realistic.

As a parent involved in the pathfinder, it can be difficult. After all, you are not experts in every single field. You are, by definition,  informed mainly by the experiences of your family, and other families that you know. This can be a strength and a weakness:  the parent needs to be able to extract from their experience, what is useful to the process and not get bogged down by past injustices in dealings with the LA or present worries about their own child.

You’re there, after all, to represent all parents, carers and most importantly, the often unheard voice of our children. And let’s not forget, some children aren’t lucky enough to have parents and are ‘Looked After’ by the local authority – someone needs to speak for them, too.

The Regional Framework for Parent-Carer Participation says that Parents and Carers are central to, and key partners in, the SE7 Pathfinder activity, which is a learning process for all parties. Sometimes this is hard to believe. Comments I have heard include  “Some parents just want to get a statement to get their child into a good school.” This from the (now former) head of SEN. Or, from another professional, “Some children have too much provision in their statement.” Not to mention that even now, parents still say that their LA case worker seems to feel the money for provision is coming out of their own pocket.

I think one of the most important things that needs to happen and right now, is a cultural change in attitudes to one where parents and LEA are not seen as being on opposite sides. This, I think, may be the most difficult part of the whole process but it is crucial.  There are too many examples to count where parents have been forced to the brink of despair, have just given up or had to remortgage their homes in order to secure the right educational solution for their child.

If the new process doesn’t come with a shift in the entrenched local authority belief that parents are trying to get ‘more than they’re entitled to’ or to ‘game the system’, then any number of new laws will not bring about real change. Let’s not forget  parents don’t go into this process for a laugh. It’s gruelling, it’s exhausting and it’s distressing. Often parents turned down at the first application just give up  and they are often the parents who are most in need of support but who have no knowledge of how to get it, because they find all the information leaflets sent out just too confusing.

So, you’re probably wondering how this new system will work  and key to this is the new Educational Health and Care plan. What will an EHCP look like? For a start, lots of outside commentators seem to be mistaking a single plan for a single assessment. The different assessments will depend on the needs of the child but the idea is to have a single plan that encompasses all the child’s needs from educational, health and social care.

Because it’s such a broad ask, actually designing what the finished Statutory plan should look like is taking some time. In Surrey we have just prepared a second draft of our own, which is shaping into a workable document through lots of feedback from professionals and, I’m delighted to say, our parental contribution has informed its development a great deal.

The plan involves multiple entry and exit points and the plan will be updated as the child develops. This is fine in theory, but many parents will be worried that this contrant review process will end up with their child losing provision and if it’s updated every year regardless, it’s going to cost a lot of money.

The idea is that once an initial problem with a child is raised – at whatever age it is found- then a Multi-Agency meeting is planned with all the relevant services. The main idea is that the parent should only have to tell the child’s story once. I’m not sure, in practice, how practical this will be.

The parent will be able to choose a key worker to support them through the process. After the meeting, it will then be decided whether any action needs to be taken at this point, or if an assessment is required. It’s intended that at any decision point, an appeal can be heard although they do intend to include more of a mediation process. Again, how this will work has not been finalised.

You can see that even at the early stages of drafting, there is no intention just to have one assessment  it just wouldn’t be possible if a child has multiple and complex needs.  After this, it will be decided whether the child’s needs can be met within the local offer or whether an EHCP should be drawn up.  At the forefront of the EHCP is a focus on ‘outcomes’ which will, of course change as the child progresses through this endless cycles of reviews during their education and on until they are 25, if necessary. And at the heart of the process is the child.

On the face of it  a good, holistic idea, but the devil, as we are all finding out, is in the detail. For example, there is the question of who will be writing the final plan. At present, the statement is written by a statement writer whose usual background is a case worker with a few years experience. They like to, so I’m told, sit in isolation in a darkened room writing up a document that will affect the rest of a child’s education. This explains perhaps why most of them are pretty inadequate.

As the idea is to involve the parent and/or keyworker at all stages, this will certainly have to change. The person writing the plan will, in collaboration with the parents & key worker, have to sift through the results of the assessments to find the key needs that need to be provided for. So to me, as a parent, the major people in this whole process, aside from the child, will be the Key worker and the plan writer.

To me, and this is only my opinion, the key worker should be an independent advocate for the child: that is, independent of the LA or the parent, but who also has regard to the parents’ support needs. If this is the case, then negotiation can be made at the plan writing stage to come to an agreed plan so that the need for appeal is minimised- because nothing is finalised until all parties have agreed and all parties are fully involved.

At the moment, a statement writer is supposed to distil the evidence into a statement to fit in with what might be available from the LA. And so when a parent wants an independent special school, further negotiations or an appeal has to take place. And that appeal is usually for parts 2, 3 and 4.

On top of this, I think parents should be encouraged to think about placement at a much earlier stage. Some already do, but other, perhaps less socially mobile parents are left with a statement that the local school can’t possibly hope to meet.

This is where the key worker is a bonus  as a person who, presumably, does this for a living, they will be familiar with the range of provision both in and out of county and will be able to present a shortlist of schools for the parents that is suitable for the child  who, after all is who this whole process is about.

So the plan writer needs some pretty sterling qualities: – someone with a keen analytical mind; compassion; knowledge of education; health and care services, who is also able to work collaboratively. Wow! What a person!

And the Key Worker: This needs to be a person of infinite patience who also has knowledge of education, health and care providers, compassion, independence and an ability to withstand the pressure of the LA and its focus on budgets and the pressure of the parents who may or may not be able to clearly see what is suitable for their child. They also need an awareness of what is available to support parents (they may need a magnifying glass for that!)

This is a vital issue:  parental stress through the needs of a disabled child, can lead to family breakdown, which is counter-productive to the future of the child.  It can also lead to illness of the parent who is then unable to care for the child.

So, I strongly believe that it is impossible to be able to carry out satisfactory pathfinder trials until people of this calibre are identified and recruited, because these are people vital to the process. This does not fit with the government’s stated timetable and it would be a shame to have to cave in to pressure from the government when there is a huge opportunity to reform the SEN system for future generations.

Unfortunately, the coalition government sees the reform process as an unstoppable train that they are pushing through with, on their on timetable, with no regard for the realities of what is happening on the ground.

It’s little short of crazy and they have been told their timetable is unrealistic but, by all accounts, they are NOT listening and so everyone is under extreme pressure to push through a process at break-neck speed that will be in danger of being just as ‘not fit for purpose’ as the one it aims to replace. I think that the government should not rush to legislation. As I have outlined, the trials are yet to begin in earnest  and at this stage in the year with the summer holidays around the corner, look set to be delayed even further.

And yet the government says it aims to use the results of the pathfinders to inform its draft bill this Summer. I’m not sure where they’re planning to get these results from and, with the exception of West Sussex, few families have been registered for the pilots. Surrey for example have ‘identified’ a number of parents for various aspects of the trials, but none have been registered yet for the EHCP, which is the crux of the whole reform. And we are far from alone.

If the government are serious about making a change that will truly benefit children with SEN and disabilities, surely it is better to get it right, than to get it done quickly.

A government spokesman is reported in The Guardian to have said they do not expect to get Royal Assent before 2014 so why the rush this summer? A lot of money is being spent on the pathfinders  even down to catering for all day sessions, hiring meeting rooms, paying attendance and travel expenses.

It is only right that spending, what is taxpayer money, should be rewarded with a system that is sound, reliable, works for families and provides appropriate, lasting educational and social solutions to children with special needs and disabilities.

Special Needs Jungle in the Daily Telegraph. What I really think

There’s a story about SEN in the Daily Telegraph today “Can 20 per cent of schoolchildren really have special needs?” by Peter Stanford. It’s already attracted lots of comments, some informed, others somewhat less so, shall we say.

The story is a follow on to other, recent reports blaming rising SEN figures on either bad parenting or bad teaching or both. Peter wanted to find out the real root of it, but it seems even he was flummoxed.

He interviewed me for the piece and the general gist of what I said is there, although I didn’t give up my TV career to go into school to help, I gave it up to be with my children at home because I decided it was a much better use of my time than giving good “TV smile”. Being able to help in school and see for myself how things worked was very useful, especially in the light of my boys’ difficulties. I could see for myself how different they were to other children, in a classroom setting. I could see that the teachers were, in my opinion, of varying quality, ranging from totally brilliant to inexperienced and out of their depth.

What I said when speaking to Peter but didn’t make it into the piece, was that I believe that the pressures of today’s society on children, parents and teachers are immense. Responsible parents are faced with the knowledge that their kids are going to have to survive in a highly competitive world and are more vigilant when they see their child not doing as well as they might. Responsible parents just want their child to have the same opportunities as every other child to reach their potential – and that sometimes means accessing extra help through the SEN system.

Are these parents all middle-class? Many are, but far from all of them. I know this to be true from the emails I get. It doesn’t matter what class you are, the difference is how much attention you’re paying to your child and that has nothing to do with class.

Now, it is obviously true that a child does not automatically have SEN just because they are not at the top or even the middle of the school class. But a parent knows their child the best. When their profile of achievement is uneven or their social difficulties affect their ability to learn, intervention is warranted. In a mainstream school, a teacher has thirty children in the class. That’s thirty children of differing ability, different learning styles and varying levels of attention and behaviour, whatever their background.

Teachers aren’t super-human. They’re overworked, stressed (whatever the man from OFSTED says) and under-resourced. Can one person pay as close attention to the needs of thirty totally different children as each child requires? Of course not and the blame is not theirs. The SENCo might have three other roles in the school. The IEP may not be worth the paper its written on because it’s rarely looked at (through time pressure, not because the teacher doesn’t care).

This is why responsible parents have to step in to make sure their children get the help they need. They’re not “sharp-elbowed” or any other derogatory term. They are responsible, vigilant and determined, because if they don’t help their children, no one will. And don’t think that they are able to somehow ‘cheat’ the system. Only around 2% of children actually get a statement – far less than should have one in my opinion, but those that do have been through an unforgiving assessment process of experts and, sometimes, the scrutiny of an appeal to the SEND Tribunal

And what about those children who are not blessed with determined parents like these? The ones who are often put on the SEN register because it’s the only thing in a teacher’s toolbox to give them a leg-up? This is the huge inequity of society. These children often fall through the cracks. They end up in a continuing cycle of deprivation. They may even end up in the criminal justice system.

They may or may not actually have special educational needs to start with, but if their home life is insecure and they live in poverty, it is sure to have an impact on their learning. They may just need attention and nurturing to give them self-esteem and confidence in themselves. Former head teacher, now an Educational Psychologist, Charlie Mead, has an answer and it’s not rocket science. He has instigated ‘nurture groups’ in secondary schools with amazing results.

In this presentation he describes how nurture groups in mainstream secondary schools can enable children with “special educational needs” to receive the support they need and improve their educational outcomes making the best use of scarce resources. Watch his presentation below. To see him speak, book for the TAPF SEN conference in June at this link

If ‘child centred’ help is a no-brainer, why isn’t it happening?

One thing that’s become very familiar in the last few years, both personally and from reading your comments and emails, is how outragously hard it is to get the right medical and psychological support for ASD children and their families.

Our family has been waiting for a CAMHS appointment since the beginning of the year. I’ve called up the consultant’s secretary on numerous occasions and still nothing happens, despite being promised an appointment at the beginning of April. It’s frustrating, stressful and my son meanwhile, is not getting the help he needs.

Not that going to CAMHS is a particular help in many cases. When Son1 went, we were told that CBT wouldn’t work because he had Asperger’s and as he was now in the right school, goodbye to you!

And professional support for parents? Don’t get me started. My GP told me candidly that there wasn’t help for anyone and that’s just the way it is.

One lady who wrote to me recently said, “The two consultants in our CAMHS team told me that my son doesn’t tick enough boxes to fit easily into a diagnosis but they did acknowledge that he’s a complex boy with significant processing deficiencies (whatever that means). I stamped my foot a bit and said that they jolly well need to try to fit him into a box so that we can get some help and support for him and they agreed to carry out some diagnostic tests. Unfortunately, all did not go to plan as when we arrived at the department for the cognitive tests, the consultant had collapsed and was being taken away in an ambulance. The other consultant told us that his colleague had been made redundant and that we wouldn’t have another chance of an appointment with her. This was in January and then I never heard from them again.”

She went on to say that her GP wanted to refer her son elsewhere, but CAMHS refused to support the referral as they want to see the diagnosis through themselves and are expecting a locum to come in the near future. “It seems that at every step of the way we are faced with obstacles. I can’t believe what they are prepared to let these children go through before they get a diagnosis. I am determined to get things sorted for my son but feel so sorry for the other children out there who have parents who are less able to challenge the professionals. I hope that one day things will be different.”

Another mother told me that her 11 year old daughter, who suffers from chronic pain and ASD, was refused an assessment by the LEA. After a period of homeschooling, her daughter went back into school as although her anxiety and self-esteem had improved, the mum was concerned about her daughter becoming isolated.

She said, “During this time, I applied for a statement but the LA refused to assess her, saying the the school were meeting her needs. I didn’t appeal because I was so wrapped up with dealing with her pain and needs myself.

“She spent about two weeks in school, before it became quite apparent that her new levels of self esteem had dropped through the floor. She bacame anxious and her pain got worse. So she was signed off sick by the doctor. I was told that if a child was signed off for over a certain period they would get some help, but none arrived. So during November and December she remained at home, waiting patiently for her medical appointment in January, which we have waited for since July. The school sent her a few SATs papers.

“After an understandable meltdown in the hospital and the trauma of the whole experience of day surgery, she returned to school a couple of weeks later and lasted three and a half days. She was signed off again with anxiety and pain but without any firm diagnosis that would satisfy the LA that we had new information to reapply for a statement.”

After seeing a different specialist, she has now been given the diagnosis she needs but is still out of school. The diagnosis means that she can now, however, access out of school education. The LEA has now agreed to assess but only after putting this family through an incredibly stressful year of relentless rounds of school and medical appointments as they tried to convince someone to help their daughter. The young lady was, during all this time, in a lot of pain.

Still, it’s not over yet the mum says, “I just hope we do get a statement so fingers crossed, and in the meantime I’ll learn all about tribunals just in case we don’t!”

Will the new Green Paper make things easier? Will it really put the child at the centre and bring together health, education and care? We’re still waiting for the government’s document, “The Way Forward” to be published, despite it being ‘imminent’ since February.

The only way a reformed system can work is if all the services do work together for the good of the child and on top of that, if the family or carers supporting the child are in turn, supported themselves. It seems like such a no-brainer, so why does it just never seem to happen?

Got the statement? Great, but your work’s not over yet.

Many parents are so relieved to get that letter saying the LEA has decided to issue a statement of special educational needs for their child that they think their work is done. And they’d be very, very wrong. A statement is useless if it does not define your child’s needs completely and set out in detail how they will be met.

When you receive your draft statement, you or your advocate, must ensure that all your child’s special educational needs have been properly identified and stated in part two of the draft statement. Then, you must ensure that every stated need should be met with appropriate provision in Part three.

Each special educational need specified in Part 2 must be met by provision specified in Part 3: R –v- Secretary of State for Education ex parte E [1992] 1 FLR 377, CA

If your child’s needs have been inadequately stated in part two, now is the time in your response (which normally needs to be within 15 days) to make sure you add them so that they can be included ans provision provided.

This process is not made easier by the way the statement is set out. Instead of listing Need, then Provision next to it, all the needs are set out then all the provision, so it is up to you to match one against the other. I would recommend using a table to do this – one column headed Needs- Part 2, the next, Provision, Part 3 and a third column entitled,  My Comments.

Then go through part two and pick out each separate need and list it in a separate row under the first column. Then go back down your list and search through part three of the proposed statement document for a matching provision. The statement document has evolved to be quite narrative in format, often just pasting in chunks from the Ed Psych report (in our case from the Ed Psych report that we had paid for ourselves) This does not necessarily mean that the statement writer has understood your child’s needs, just that they know how to copy and paste.

Part 2 can include narrative description of a child as well as specifying SEN (cf R –v- Secretary of State for Education ex p E [1992] 1 FLR 377): W –v- Leeds CC [2005] EWCA Civ 988, [2005] ELR 617, 29/7/2005

So your final table should have all your child’s needs in column one that have been stated and with your own additions if needed (make sure it is easy to understand you have added these yourself)

In the second column, which reflects Part 3 provision, you should have listed everything you can find that matches with the needs. This may well be eye opening.

Then in the third column make your notes and observations about the provision.

Then go back through Part 2 and Three and make sure you have covered everything. You may well find that there are unstated needs or needs that have been stated that there is no provision for. Of course, you may see that your statement writer has done a sterling job and everything is as it should be.

If you have non-educational needs and provision listed in part five or six, ensure this is also adequate. Sometimes speech and language is listed as non-educational. If your child needs this help for living (eg eating) then is is non-educational. If they need OT or SLT for learning – ie, writing help for dyspraxia, communication skills, then is should be in parts two and three as educational provision.

You can ask for a meeting during this time with the LEA and after the meeting you have another 15 days to ask for further meetings. Within 15 days of your last meeting, you can send in any more comments. If you would like more time to comment, you should talk to your case officer.

There should be no school named in part four at the point of issuing a draft statement. But be aware that the LEA is not obligated to name a school that can provide ‘the best’ education, just one that provides an ‘adequate’ education that meets your child’s needs.

The LEA/SENDIST is under a duty to secure provision which meets the child’s SEN but is not “under an obligation to provide a child with the best possible education. There is no duty
on the authority to provide such a Utopian system, or to educate him or her to his or her maximum potential. …”: R v Surrey CC ex p H (1984) 83 LGR 219.

It’s a very good idea to research suitable schools before you even know if you’re getting a statement so you know what type of school can meet your child’s needs. Often you will know exactly which school you want them to go to – and that’s the next step!

SEN-Getting Started With Statements

This advice and more is detailed in my SEN statementing book, Special Educational Needs, Getting Started with Statementing. It’s available in paperback or ebook from Amazon & WH Smith online or paperback from Waterstones.com. Or you can order it from your local bookstore. So many SEN books are expensive so I have priced this at just £6.99 to make it accessible to as many parents as possible.

Legal Quotes Source: ISC

I want your statementing stories

I get emails from lots of people with questions about statementing and I do my best to answer them within the best of my knowledge or signpost them to someone who can. I also read lots of stories on message boards from people going through the process who are looking for information or other people’s experiences and so I’ve had an idea.

If you’ve been through the statementing journey with one or more of your children, I’d like to hear from you. Sharing stories can help other people on the same journey and helping people by raising awareness is what this blog is all about. If you’d like to share your story with others via the Special Needs Jungle blog, please email it to me (Tania) at info@specialneedsjungle.com. If you’d like more information before committing, drop me a line. Also, if you have any burning ideas for topics you’d like to see covered, send them in.

Post are usually less than a thousand words and I’d love to include a photo if you wish and/or, if you have your own blog, a link to it. If you’d prefer to remain anonymous, you can change the key names in the story.

I may need to edit for length or legal reasons (we don’t want to libel anyone – even though they may well deserve to be named and shamed!)

Over the next few months, I’ll be writing more about the new SEN process as it develops – there will be more news from central government soon, maybe in the next week or so. Make sure you subscribe by email to the blog so you don’t miss any updates!

Thanks!

Tania

2012 brings a School Run SEN Qn’A and a win for Pat! #specialneeds

SEN-Getting Started With StatementsIt’s January 6th and my boys are still off school; they finally go back on Monday. It’s been an interesting Christmas break with my eldest having a party for 12 of his closest teen pals at our house (my sister who was staying with us cleared off to the pub). This was preceded by just minutes by my 12 year old slipping off his bedroom ‘Balcony’ (he doesn’t have one) and me seeing him tumble past the kitchen window to the floor. He was mercifully unhurt, though I had to reach for the Christmas sherry at 4pm.  No surprise that I was almost catatonic by Christmas Day. Still, Jamies’ turkey was a hit, the gravy went down a storm and the brandy for the pudding ended up in my glass.

The teenage years bring their own set of issues and these are intensified by their Asperger’s. They are both completely different in their needs and idiosyncrasies – as they say, if you’ve seen one child with Asperger’s, you’ve seen one child with Asperger’s. Finding new ways to parent in adolescence is challenging and exhausting. 2012 looks to be an interesting year for us!

It’ll also be interesting to see how the SEN Green paper progresses though its pathfinder stages in the coming months. Our LEA, Surrey and that of neighbouring Hampshire are among those chosen to test run the proposals and Special Needs Jungle will be watching closely.

When the changes, in whatever form they come, are implemented, I’ll have to update my SEN guide to Statementing book. The name will have to change for a start, though I’m quite certain all the advice to parents having to gather evidence to prove their child’s needs will stay exactly the same. They may abolish the word ‘statement’ but if you want your child to get high level SEN support, you’re still going to have to prove your case and my book can help. Nothing is going to change in the next few months anyway, so if you’re thinking about applying for an assessment, don’t delay – the process is long and often arduous so start gathering your evidence as soon as you can.

I’m soon to be hosting a Q&A on The School Run website about statementing – get your questions in now and I’ll be answering them during the week beginning 16th January.

If you’re interested in the book – and it’s sold quite a few copies it seems, so there’s a lot of people who are looking for advice – it’s just £6.99 on Amazon or £5.18 for Kindle. If you fancy a free copy, I’m offering two for people taking part in The School Run Q&A, check out their site at the link in the para above.

Also, congrats to Pat Bolton Arkless who won the free copy in my Christmas giveaway. Son2 wafted down from his Technolair that he’d scented with cinnamon Glade, graciously leaving his 32″ TV (thanks to fab pre-Christmas sales) Xbox experience to select a name from the hat. Pat, it turns out, runs Parent Power in Gateshead that helps families with special needs kids, so I popped an extra copy in there to help her very valuable work. And now I’ve found her, I also cheekily asked if she could find time to write a guest post about her work. Even though she’s a busy woman, she’s kindly agreed so we’ll feature this in the coming weeks (No rush, Pat, if you’re reading!).

So, Happy New Year to you all and if you have any ideas for great posts, or want to write one suitable for here, get in touch!

Have you ever applied for a Statementing Assessment for your child? If so, take this poll!

I’m carrying out a poll into how people fare when they initially apply for a Statutory Assessment for their child. If you’re been through it please take the poll and share the poll with as many people as possible. The results will be published in the New Year. Thank you!

Book Review of Special Educations Needs: Getting Started with Statements

Special Educations Needs: Getting Started with Statements – the parent to parent guide to getting your child the help they need

Reviewed by NAS Surrey Branch member Emma Searle, mother of a 4 year old recently diagnosed with ASD

SEN-Getting Started With Statements

“This is a brilliant little book. We are just starting on the statementing process and it’s a bit depressing to find that it’s such a battle, but it is refreshing to get an honest and real account of what happens. I really liked the detail on the process – for example, I hadn’t realised that you don’t have to stick to the form to give your evidence, but can write your own account. It was really useful to have all the detail and being able to read extracts from other people’s statements is invaluable.It shows you how to use the SEN Code of Practice – I haven’t seen any other examples of this. Because it’s written by parents for parents, it can give you information you don’t get on official we sites. I found it quick and easy to read and easy to dip into when you’re waiting at school for example.”

A huge thank you to Emma for taking the time to write the review and I hope very much the book has helped you so far. If anyone else has found the book useful and would like to leave a review, I would be delighted if you would post it on the Amazon book page

IPSEA – A wonderful charity for free advice and support for SEN

In my book, Special Educational Needs, Getting Started With Statements, I make several references to a special educational needs charity called IPSEA.

IPSEA provide free advice and support for people who have children with SEN and offer an invaluable service. Today I am delighted to have a guest post from the charity’s Chief Executive, Jane McConnell

Jane McConnell, Chief Executive of  the Independent Parental Special Education Advice charity or IPSEA, became an IPSEA volunteer 10 years ago. She has been a paid IPSEA staff member for the last 7 years and has a 12 year old son with complex SEN. Jane has overcome several substantial hurdles to get the right education for him and has firsthand experience of what thousands of parents have to go through. Here, she explains what IPSEA are all about and how the charity can help you:

What is IPSEA?
IPSEA is a registered charity providing free and independent legally based advice for parents whose children have SEN / disability. We have been supporting parents since 1983. IPSEA covers England and Wales. We use highly trained volunteers to deliver all our advice and support. We offer more support to the most disadvantaged families. A small team of paid part time staff co-ordinate and train our volunteers.

What does IPSEA do?
IPSEA advises families whose children have all types of SEN / disability, including behavioural problems, communication difficulties, learning disabilities and autism. IPSEA often helps families before their child has even been diagnosed. IPSEA’s legally based advice gives parents the confidence to exercise their rights. This basic understanding of the law equips families to be more involved in the decisions that affect them and helps them to avoid future issues. IPSEA helps around 3,000 families each year – thanks to our dedicated volunteers and supporters.

How can IPSEA help me?

IPSEA offers parents the following free services:

Common problems

Many simpler and common issues with the SEN system can be resolved with the help of IPSEA’s on-line resources:

What parents say about IPSEA

Our website has quotes from parents we have helped. We survey the parents that have used our services to ask them for feedback. Their feedback helps us improve our services and secure the funding we need to keep them going.

Using parents’ experiences to influence change

IPSEA gathers evidence and uses it to lobby for changes to current legislation. We also attempt to correct the practices of local authorities whose policies are not in line with legislation.

1,039 people took part in our SEN Green Paper survey. 796 of them were parents of a child with SEN. They agree with IPSEA’s strong belief that parents’ views need to be listened to and respected by the professionals responsible for assessing and educating their children. Without this basic respect, mistrust builds up. This can have a detrimental effect throughout the child’s education. IPSEA’s full response to the SEN Green Paper proposals is here .

IPSEA works constructively with the government. We were particularly pleased that the new administration activated the right of parents to make an appeal to the SEND Tribunal if their child’s Statement did not reflect the needs of the child.

We gave evidence to the parliamentary education committee on the SEN Green Paper. We also successfully campaigned to protect legal aid for SEN appeals.

Keeping IPSEA going

It costs IPSEA around £30 to provide telephone advice to a family and around £300 to provide a tribunal caseworker. We appreciate all the donations we receive. You can donate using PayPal or debit/credit cards. You can also set up regular donations.

IPSEA is always looking for more volunteers. You need to complete our training first. This training is very thorough so we ask you to commit to actively volunteering with us for at least 2 years. “I enjoy the feeling of empowering parents – talking them through their problem and sending them off with a clear plan of action” says one of our experienced volunteers.

SENAC for Special Needs Advice in Northern Ireland

If you’re in Northern Ireland and you’re looking for help with getting your child the special educational needs support they require, there is a service for you. The Special Educational Needs Advice Centre, or SENAC,  is a regional charity set up in 2003.

They provide FREE independent advice on behalf of children and young people with disabilities and special educational needs (SEN) attending schools in Northern Ireland up to the age of 19 years. SENAC offers  information to parents and carers on all aspects of the statutory framework of SEN provision in Northern Ireland.

SENAC also offers an individual advocacy service for children and young people and work with parents to facilitate positive communication with schools and assist them to make more meaningful representations of their child’s needs.

SENAC OFFERS:

  • An independent and confidential telephone advice-line service, providing advice and information to parents/carers at all stages of the process for the Assessment and Statementing of Special Educational Needs.
  • Written information and guidelines on the Assessment and Statementing procedures both on this website and in print on request.
  • Assistance to parents in understanding policies and procedures in relation to their child.
  • Information on contacting other relevant organizations.

SENAC operates an Advice Line on 028 9079 5779. Further information can be obtained from their website www.senac.co.uk

About SOS!SEN, a fantastic SEN charity

SOS!SEN is a small charity based in Middlesex that offers a fantastic service to parents who are trying to secure the right educational support for their children. It was started by a small group of individuals who had spent much of their lives in education or related services. They now have a team of volunteers made up of parents and friends who have children with special education needs. They deal with an ever growing number of cases, including representing parents at the SENDIS Tribunal.

SOS!SEN have a telephone hotline and lots of useful information on their site. They are well-versed in the tactics of local authorities and during 2009, the SOS!SEN helpline fielded 6,000 calls. About 30 per cent were new referrals.

They offer a free, friendly, independent and confidential telephone helpline for parents and others looking for information and advice on Special Educational Needs (SEN). We concentrate on helping people to find their way through the legal and procedural maze which is so daunting to so many who try to obtain satisfactory provision for a child’s special needs.

Their aim is to empower parents and carers, and to encourage them to become sufficiently confident to tackle for themselves the obstacles and difficulties that arise in battling for SEN rights. In turn, they hope they will use their knowledge and experience to help others.

They offer our services throughout England and Wales and run monthly walk-in advice centres in Twickenham, Thornton Heath and Aldershot, so that parents from surrounding local authorities such as London, Surrey, Hampshire, Kent and Middlesex can come to see them, if they have a particularly complex problem.

They are also launching a series of workshops that will be very useful for parents to attend about the various stages of statementing.

If you are on the statementing road and you encounter problems, do get in touch. The workshops mentioned above will help get you started as well.

Part Two, SEN conference, Towards a Positive Future, Review

This is the second part of the SEN conference review in Newbury, leading, logically enough from … Part One

Former Head Teacher, Charlie Mead is a consultant Child and Educational Psychologist, advising schools, the NAS and health and prison services about working effectively with young people with complex needs. He has a wealth of knowledge and experience in the field of helping children with special needs and makes the analogy of how the system is like an egg timer – with all the resources at the top not being able to filter down to those who need them at the bottom – ie, children. He spoke of how he had introduced nurture groups to a school in Birmingham where children with special needs were taught, mainly in the same classroom without the need to move around the schoo0l. They were given the help they needed and this had greatly improved their outcomes and allowed them to participate and be included within the mainstream of education. This is a fascinating idea that, with a some effort and will, could be adopted by every school in the country. It deserves greater public attention than it so far seems to have had.

One form of ‘hidden disability’ I have not dealt with before is that of acquired brain injury – that is, an injury not present at birth that occurs by illness or accident during childhood. Often these injuries present in a similar manner to developmental disorders. Every year it is estimated that at least 50,000 children and young people acquire a brain injury. Often, it is not until some time after the injury that a connection is made between a behavioural or learning deficit in the young person and the injury or illness that previously occurred. Research shows that 50% of those in custody have some kind of ABI. Louise Wilkinson, Training Manager of the Child Brain Injury Trust spoke at the conference of the issues faces by people with ABI. Her charity has been working to educate teachers on how to deal with such children. The charity is holding a conference in 2012 on the issue.

Finally, conflict resolution & NLP coach, Ian Ross and Lynne Kerry of Vievolve held a session about how to approach and deal with conflict and negotiations. They explained how to negotiate on ‘interests’ rather than ‘positions’ and how to maintain your cool when involved in a difficult discussion. One of the pieces of advice was to put yourself in your ‘opponent’s’ shoes and think what they are thinking. This was exciting to me as it was exactly how I approached applying for my sons’ statements. I considered the arguments that the LEA might come up with for not giving the statement and in my application, I ensured that I had a convincing answer for every possible reason to deny me what I wanted to achieve. The company offers NLP coaching to businesses and individuals and has a number of courses at its South Oxfordshire venue coming up.

All in all there was great concern over what the future for special needs might bring. It is clear that the green paper is far from perfect and that changes will need to be made. But it is heartening that there are plenty of people who are concerned with SEN that do not forget that the child is at the heart of everything. It is impossible to ignore the fact that money is always an issue, especially in these times, but our priority must surely be with the most vulnerable and childrenwith special needs are undeniably that.

The site for the conference, where the transcript of the presentations will soon be posted it here: http://www.towardsapositivefuture.wordpress.com. Another event is being scheduled for next April.

Links for this post:

Charlie Mead: http://www.cpsforchildren.com  Twitter: @CharlieMead53
Child Brian Injury Trust: http://www.childbraininjurytrust.org.uk  Twitter: @cbituk
Vievolve: www.vievolve.com Twitter: @Vievolve

SEN conference, Towards a Positive Future, Review part one.

I attended a very interesting conference on special educational needs on Friday. It was held to mark the launch of a new organisation aimed at providing a ‘one stop shop’ to parents needing to find professional services such as speech and language and occupational therapy for their children. It aims to establish a database of professionals who can work with children in teams that talk to each other and deliver a seamless service for the child. It’s still at an early planning stage and its founder, SLT professional, Janet O’Keeefe, is actively looking for ideas and people willing to join her.

The event also marked the launch of Janet’s book, Towards a Positive Future, which I have written about here.

The conference had several interesting speakers some of whom I hope to be able to bring you more from on this site in the weeks to come. The event was held at the Mary Hare School for hearing impaired children near Newbury. The school does inspirational work in providing an education for its pupils, helping each through individually designed hearing equipment. As a non-maintained state school, the school’s head, Tony Shaw, said they are ‘not considered to be part of inclusion’ and have had their funding cut by central government. This, despite the Education Secretary, Michael Gove, himself having a sister with a hearing impairment.

The school has had to diversify to survive, establishing an ear mould lab that services the NHS. Despite this, Mr Shaw says they never forget what they’re there for. He said, “At the core are the children we have the passion of serving.”  It’s a sad fact that, in the politics and cost-cutting of government both local and national, this message is too often overlooked.

Another speaker was Kevin Geeson, CEO of Dyslexia Action, who talked about the opportunities and risks of the Green Paper. He highlighted concerns about the assessment of hidden disabilities such as dyslexia in that it may not be picked up early enough and the question of who will control the personal budgets given to children to provide for their SEN. Mr Geeson said the Green paper brought an opportunity to provide the proper skills and support for teachers to include all children in the curriculum. He said, “Good teaching for children with hidden disabilities is good teaching for all.”

Education solicitor, Inez Brown of Anthony Collins solicitors, set out the legal framework and funding of special needs and pointed out the problem with parents appealing against SEN decisions for children at the new Academies because the Academies do not fall within the Education Act. She also pointed out that the Green paper removes Speech and Language and Occupational Therapy out of educational provision – something every parent of a statemented child should be aware of. This means that the local authority cannot be challenged about these things at a Tribunal.  Ms Brown also made a startling  statement about the trialling of the new green paper which has just been announced and I am hoping she will be writing more about this on this site very soon.

The conference also heard from internationally acclaimed academic, Professor Heather Van Der Lely who has developed an early-identification test for dyslexia called GAPS. I will write a separate piece about this so won’t go into detail here. The professor pointed out that seven per cent of children have a specific language impairment – seven times the incidence of autism. She is trying to bring about the widespread use of GAPS which, she says, is quick, efficient and highly accurate. The crucial issue is, of course, that there are not enough Speech and Language Therapists to help all those that the test could identify. Perhaps the government should focus on how to recruit more SLTs into the profession and create a environment that enables enough of them to stay within the NHS.

The next post will detail the speakers from the afternoon session of this very enlightening conference.

Links for this post:

http://www.dyslexiaaction.org.uk

http://www.AnthonyCollins.com

GAPS

Mary Hare School

Twitter: @JanetOKeefe@kgeeson

My new book for parents looking for SEN help – launched Monday 10th October 2011

On Monday, I officially launch my new book aimed at helping parents of special needs children get the education they need. It’s first coming out in ebook format, followed by a paperback in a month.

The book’s called Special Educational Needs – Getting Started with Statements. It’s a parent-to-parent guide to starting to compile a statutory assessment application for you special needs child.
It’s tough enough having a child who has special educational needs – getting them the right help can seem like an impossible task. This book sets out in a simple, easy to follow way, a step-by-step guide to how to prepare the best application you can. While aimed at the UK Education system, parents everywhere will find it useful if they are trying to organise a case for their child.

I’ll write more about it on Monday, together with links to where you can buy it. In the meantime, it would be brilliant if you would pop over to the facebook launch page and say hello!

The event page is here: http://www.facebook.com/event.php?eid=297761316917633

New Foundation Launched to Support Children with Special Educational Needs

A new foundation which will enable practitioners to join together to provide multi-disciplinary specialist services for children with special educational needs is being launched next month – and could transform the present fragmented and bureaucratic system.

The Clarity Foundation hopes to attract health and social care providers, as well as education specialists, to join as members who can be referred to families and local authorities as approved providers meeting statutory guidelines.

The foundation is the brainchild of speech and language therapist Janet O’Keefe and Robert Ashton, best selling business author, social entrepreneur and campaigner, who are passionate about providing a new joined-up efficient system which supports children and their families with educational support, while at the same time eliminating unnecessary duplication and bureaucracy.

It will be launched at a conference entitled, Towards a Positive Future, aimed at parents and professionals, to inspire, share experiences and discover how they can achieve more for children with special needs. The conference is being held on October 14-15 at Arlington Arts Centre, Newbury, which is based at the Mary Hare School for deaf children.

There are currently 1.7 million children with special educational needs in England who require support for wide ranging conditions, from dyslexia, dyspraxia and Down’s syndrome, to autism and attention deficit hyperactivity disorder.

Janet says: “We believe that having a one-stop shop is the best way to enable parents and local authorities find all the support services desperately needed by children with special needs, and that our foundation is the most practical and efficient way of ensuring that those services are integrated and coordinated. We need to bring practitioners from health, education and social care together and plan for the future while the present guidelines for new contract arrangements is under review. Our foundation will be a valuable database of all heath and social care providers, as well as education specialists.

“Additionally, we can streamline time consuming and expensive administrative processes. For example, we can help with criminal bureau checks and professional indemnity insurance. At the moment, if a practitioner is not directly employed by a school or local authority, every school they visit should conduct its own CRB check. Many practitioners regularly visit 20 schools a week sometimes in several different counties and are therefore checked 20 times.”

Robert says it makes good sense to become more efficient during the present shake up of these services:

He says: “However you feel about the Government’s “Big Society” agenda, the fact is that the worlds of education, health and social care are undergoing massive change. The Clarity Foundation is being formed to help parents make sense of those changes, and in parallel to help practitioners create their own enterprises. That way both groups can connect, create opportunities and meet the needs of young people striving to overcome disadvantage.”

Specialist speakers include educational psychologist and former head teacher Charlie Mead, who has worked with children with severe emotional and behavioural problems and special needs for 20 years. He has grave concerns about the present system and highlights failures he has observed, leading to neglect in some cases for vulnerable young people.

He says: “Charities are afraid to stand up for their clients in case their funding is withdrawn. Academies are afraid of further failure by taking on exactly those students who would benefit most from their resources. Children and Family Services have neglected the vulnerable due to bureaucratic inertia and a lack of consistency. All these situations can be changed if the interests of the child are put first.

“When working with highly vulnerable children in care, many of whom have been sectioned, it is clear that the recession is having a considerable impact on the young people and their families – especially those who cannot cope emotionally, are addicts, are sexualized early and have been abused. They need expert consistent provision – not piecemeal services from organisations who are threatened by lack of funding.”

Other key speakers are Kevin Geeson, CEO of Dyslexia Action, who will highlight the impact of the SEN Green Paper; speech and language specialist Prof Heather van der Lely, who will highlight her simple test for an early diagnosis of specific language impairment; and both Sandy Burbach and Alex Kelly, who will describe the importance of developing social skills and self esteem in children.

Janet is also launching a book she has edited at the conference also called Towards a Positive Future which includes stories, ideas and inspiration from children with special educational needs, their families and professionals.

Full details about the conference can be found at their website, Towards a Positive Future:http://towardsapositivefuture.wordpress.com/

There is a range of ticket prices: parent £90 (one day) £155 (both days); second parent £60 (one day) £120 (both days); professionals £200 (one day) £385 (both days).

Source: PRWeb

 

The SEN Green Paper: history repeating – from SEN Magazine

The following article extract is taken with permission from SEN Magazine, the UK’s leading special educational needs magazine.

The SEN Green Paper: history repeating

More than three decades after her influential report, Baroness Warnock fears that the Government’s SEN proposals will deliver little meaningful change

The subtitle to the long awaited Green Paper is “A new approach to special educational needs and disability”, and the document promises that all those children and young people who would now have statements of SEN should have one statutory assessment and be issued with an education, health and care plan, which would be agreed between all the professionals involved and the child’s parents (and where appropriate, with the child him/herself).
There would be a statutory obligation on the various authorities to provide the specified services, and it would be clear which authority was to fund which service. Voluntary and community organisations would also be involved in the single assessment so as to provide a measure of independence from the service providers. This new system, at the heart of the “new approach” of the report’s title, is promised for 2014, after a period of consultation and some local tests by “pathfinders”.
When I first got the Green Paper in my hands, I was optimistic. This was because the foreword, signed by Michael Gove and Sarah Teather, and presumably written by the latter, was agreeably frank about the urgent need for reform of the system, and seemed to have taken account of the numerous recent reports, including those of Graham Adams and Frank Field, as well as the earlier critical reports from Ofsted and the all-party Commons Select Committee on SEN. Moreover, since one of the worst features of the present situation is the number of cumbersome assessments by different professionals that a child may have to undergo, and the fact that all of them are dictated by the then availability of funding, rather than the true needs of the child, the single assessment with an independent element seemed a good way forward, especially if the overall plan could be carried from one local authority to another if a family were to move.

But as I read on, my spirits sank…

The read the full article click here
SEN Magazine is currently offering a FREE trial copy of the magazine, with no obligation, to all parents/carers and SEN/education professionals. To sign up for their free copy, all you have to do is visit
http://www.senmagazine.co.uk/index.php?option=com_chronocontact&chronoformname=trial&responsecode=SNJ0911

Great Expectations – Educational Support campaign from NAS

This post is reproduced with kind permission from the National Autistic Society

Half of all children with autism wait over a year for appropriate educational support, and over a quarter have waited more than two years, finds a new report by The National Autistic Society, published today.

The report launches our Great Expectations campaign on Special Education Needs (SEN), which aims to inform and influence the Government’s proposed overhaul of the SEN system.

Children should expect an education that sets them up for life, yet our research, with over 1,000 parents of children with autism and young people with autism themselves, found that far too many children with autism are not getting the education they need and deserve. Our research found:

  • just half of parents (52%) feel their child is making good educational progress
  • 30% of parents feel that their child’s educational placement is not adequate
  • 43% of young people feel teachers don’t know enough about autism.

This whole experience has been utterly destructive for the family. An ongoing, uphill daily battle, trying to help a child who is becoming increasingly socially isolated.
Parent of a child with autism

Parents should expect an education system that works with, not against, them, but too many parents have to fight the system to make it work.

  • 7 out of 10 parents say it has not been easy to get the educational support their child needs.
  • 47% of parents say their child’s special educational needs were not picked up in a timely way.
  • 48% of parents say they have waited over a year to get the right support for their child, and 27% have waited more than two years.
  • 18% of parents have had to take legal action to get the right support for their children, and have been to tribunal an average of 3.5 times each.

Stop picking on meParents told us that while they waited and fought for the right support, their child’s educational progress (70%), mental health (60%), behaviour (68%) and self-esteem all suffered enormously.

It’s really hard to go to school. People don’t understand how hard it is. They judge me for doing things I can’t help.
Young person with autism

Mark Lever, NAS Chief Executive, says: “We have Great Expectations that the necessary changes to the education system can, and will, be made. It is completely unacceptable that so many parents are still fighting a daily battle for their fundamental right to get an education for their child.

“The Government rightly recognises that action is needed, and that they need to reform a system which continues to let many children with autism down.

“Our report sets out the practical, often simple, steps that the Government can take to create a system that works for everyone. The proposed ‘biggest SEN reform in 30 years’, will shape the future of a generation of children with autism. Let’s get it right.”

Our campaign will be launched in Parliament this evening at a reception expected to attract around 80 MPs, including the Disability Minister, Maria Miller and Shadow Education Secretary, Andy Burnham.

We need your help

You can support our Great Expectations campaign by emailing your MP to ask them to raise these issues in parliament. To find out more about the campaign, and other ways you can get involved, visit our campaign homepage.

Our key recommendations

An education that sets children up for life and a system that works with, not against, parents.

Children with autism expect:

  • to get the support they need quickly and easily, regardless of whether they have a statement or EHCP
  • teachers who understand how to support them and who have easy access to autism specialists for help.

Parents of children with autism expect:

  • to have robust, simple ways to challenge the system if their child doesn’t get the support they need
  • local authorities to have a thorough understanding of the needs of children with autism in their area, and to plan provision accordingly
  • to be equal partners in the system and genuinely involved in decisions about their child’s education and the planning of local services
  • local information that empowers them to make the right decisions for their child.

Illustration - let's work togetherWe expect the Government to listen and to act.

Let’s work together. Let’s get it right.

To read the full report please visit www.autism.org.uk/greatexpectations

The SEN Green Paper

I’ve been wading my way through the Green Paper on SEN and one thing really sticks out – what happens to those children who, like mine, already have a statement? Parents, like me, fought hard to get them the provision they need, enshrined in law.My boys are both funded by the LEA – what happens to that?

One mum, Lisa, said to me, “I had to self refer and battle and luckily with the support of a very experienced Ed Psych, get the statement and still battle to keep the stability, so I am worried. I keep ploughing through little by little. IPSEA have said they need finer details I just don’t trust any government at the moment because of the cutbacks and recession.”

The NAS says,”Parents have told us that they really value the protections that statements provide, which are an essential tool in helping to fight for their child’s rights and to hold schools and services to account if they fail to provide adequate support. Many parents we speak to have been battling for years to get their child’s needs recognised, understood and met. If the Government is to remove statements then they must ensure that they fulfil their promise to provide the same level of legal protection, otherwise they will be unsuccessful in their commitment to stop vulnerable children falling through the gaps.”

Any efforts to join up the different threads of SEN and help parents get the assistance they need for their children is to be welcomed. I did note that although the numbers of SEN at School Action and School Action+ have grown, the number of children with statements has stayed stable – indicating that there is no ‘explosion’ in the number of children with complex needs. In fact, there are many children who need to be statemented who can’t get one no matter how hard they try.

The last thing I want is to have to go through the support process again – been there, done that and proved without doubt that my children need the support they now have. I’ll be looking forward to getting more detail as the process continues.

Green Paper on SEN – Get Your Voice Heard

You have a chance to comment on the newly published Green Paper on children and young people with special educational needs in England and Wales.  See below for more details:

On 10 September the Minister of State for Children and Families, Sarah Teather, invited views from everyone with an interest in services for children and young people with special educational needs (SEN) or disabilities in England. All views and perspectives received will be considered as part of developing proposals for a Green Paper on SEN and disability to be published this autumn.

You have until Friday 15th October 2010 to make your voice heard. The link is below:

http://www.education.gov.uk/consultations/index.cfm?action=consultationDetails&consultationId=1736&external=no&menu=1

Should children with Asperger Syndrome automatically be statutorily assessed?

What’s your opinion – should children diagnosed with Asperger Syndrome automatically be statutorily assessed? I think they should because despite seeming to ‘cope’ in a regular class, so many children suffer psychological difficulties that goes unrecognised in busy classrooms. An assessment could open doors for them to get the psychological and educational support they need to thrive.

Others may say of course, that they should be left to get on with things and only have intervention when really thought to be needed. My argument against this would be that teachers are not sufficiently trained in spotting the difficulties encountered by AS children (and why should they be – they’re mainstream teachers after all, not special needs teachers) and in order to access the curriculum to their best, it would take an expert to assess them. Then, the correct level of help can be determined and the child has the best opportunity to get the right help.

Or maybe you have a different opinion on this? I’ve set up a poll on poll daddy for you to give your opinion Either way – please take the poll at the link below or leave a comment.. or both!

Back to school – but is it the right one?

For the first time since my sons started at their special school, this term we have had no fees to pay as they are both now being funded by the local LEA. I’ve written in post passim about finding our way through the special needs “jungle” of statementing and I hope if you are in that position now you will find some of the things on this site useful.

Indeed, I am only too aware of how many people are going through the process and are having a much tougher time of it than we did. We applied at a time when our LEA was reassessing the way it looks at Statutory Assessment, Statementing and Funding. For children with high-functioning AS, like our boys, it recognised that it had little suitable provision and that these children, who may have so much potential, so often fall through the cracks. They may end up in the benefits or mental health care system when they become adults because they have not received the social education they needed and cannot put to use  any academic education they gained into a worthwhile career. Or any career.

If they are lucky, they may have had supportive parents and may have been able to progress to university and into a job in a narrow-focused industry (sciences, accounting, research) where their ability to do the job is more highly prized than the ability to make lively and reciprocal conversation. These are likely to be the young people from the very highest and most able end of the spectrum, who are from middle class backgrounds with university educated parents themselves.

But too many AS young people will be in low-paid jobs far below their intellect because they cannot cope with the social interaction needed to progress up the career ladder and they have not had access to or found a route through to the support they need to thrive. Others may find their ASD so disabling that they will have to live in sheltered accommodation, relying on Disability Living Allowance and other benefits.

Now, it is not true to say that if you don’t reach the top of a well-paid profession you won’t be happy. For many people with AS, happiness comes just from having a friend to talk to or being able successfully to cope with everyday living. Many people with AS get married and have families of their own and are perfectly happy within their own circle, thank you very much.

But just think how different it could be if everyone who was diagnosed with Asperger’s Syndrome got the help they needed at an early enough age for it to make a significant difference to the outcome of their life. Yes, some may still need to live in sheltered housing and will work in in low-stress jobs because their condition dictates it. But for others it could mean the difference between a life of just coping and a life of thriving. Every single person with AS should have access to the right kind of education that my boys are lucky enough to be getting.

Parents who are worried that there my be something socially ‘different’ about their child should not just bury their heads in the sand and hope they will ‘grow out of it’. They should not just shrug and say their child is ‘coping’ at school when you really know they are just keeping their heads above water. Your kids have one shot at education and one shot at a successful and happy life and it is the duty of their parents to ensure they have the best opportunity of achieving that. Even if the option of a specialist school is not open, you can speak to your school’s SENCo, make your concerns known, ensure they are getting appropriate support at school and do your own research as well. Parents’ instincts are not often wrong.

I am speaking here from experience. We were once in the position of knowing something was different about both of our boys but not what to do about it. I spoke to their teachers, I researched their symptoms, I got them referred to a paediatrician. We got a diagnosis. We were told we’d never get a statement for either boy as they were too able so not to bother trying. We were told they had to be three years behind to get a Statutory Assessment. We were told all sorts of inaccurate things by teachers who didn’t know any more about Statementing than we did.

We didn’t listen and now we have two statements for both our sons who are both in the top few percent for ability. More than that, our LEA is paying for them to go to the school of our choice where they can be supported. It can be done. Your battle may be harder than mine; you may have to go to Tribunal. You may live in one of those LEAs like Hampshire that think brinkmanship is the order of the day. These councils will oppose you to the very last second in the hope that you will be scared off or you will end up broke, broken or both. They don’t care as long as they don’t have to shell out for your child. Shame on them, but do not be deterred. Even when you are tired and stressed and thinking of giving up, remember who you are doing this for and that they deserve the best you can give them.

If you need advice you can always leave a comment here and I will try to help or point you to someone who can. And things are changing. There are politicians out there who know about special needs, and parliamentary candidates such as Maria Hutchings who are fighting every day to improve the situation for young people with ASD. We just need to get the ones who are actually in the government to make sure that reviews that are currently being undertaken are acted upon so that the next generation of young people on the spectrum don’t face the same uphill struggle as ours do.

Give ASD children the school provision they need

The Times today (Saturday 13 June 2009) has an article about children with special needs being excluded from school. It points to a recent survey showing that 55 percent of parents of children with autism saying their child had at some point been unofficially excluded from school.

Other figures in research by the paper show that although children with special needs make up a small proportion of children in schools, they make up a huge percentage of those excluded. The problem is worst in primary schools, largely because of a lack of resources.

I think that it is not just a lack of resources but the fact that schools are increasingly expected to cope with children with  emotional and behavioural needs as well as autism, with little or no extra training. A mainstream teacher should be just that – a teacher who teaches mainstream children. He or she is not trained to be a special needs teacher and should not be expected to be one just because the government says so-called ‘inclusion’ is key.

The situation is made worse by the lack of specialist places for children with special needs. With the closure of many special schools and lack of places for children with conditions such as Asperger’s Syndrome in the first place, these children often end up with an inadequate education because they have difficulty accessing the curriculum in the same way as their ‘normal’ peers. They also have problems making friendships because they are perceived by other children as ‘weird’ and who wants to be marked out as being friends with the weird kid? This leaves the ASD child socially isolated, sometimes bullied and learning that they have no place in ‘normal’ society.

There are those whom I have heard say (including the Schools Minister Sara McCarthy-Fry), ‘Well, they’ll have to mix with all sorts when they’re grown up, so school is a good training ground for when they’re adults.’  This makes me incensed; so, they should get used to being friendless, excluded, shunned and bullied because it’s going to happen to them as adults? Is that what they would want for their children? Secondly, it is not true that they are likely to mix with all sorts of people when they are adults. We all live in fairly small mini-societies and communities where we tend only to meet people broadly similar to ourselves, unless you are someone where it is your job to mix with all sorts of people such as those in public life or public service (note the word ‘public’). This is hardly the likely career path of someone with ASD. Unless of course, they get the proper training when they are young.

If they can’t get this specialist training at mainstream school because of a lack of resources and expertise, where are they going to get it? At a special school? Don’t be silly, they’ve either been closed or are over-subscribed.

It then falls to the independent sector to fill the gap. These independent special schools usually cost a lot of money because that’s what it takes to provide suitable specialist help to give these children a shot at a reasonable life. I say, if that’s what it takes, then that’s what it takes and the Local Education Authorities should cough up and pay unless they’re willing to find capital resources to invest in their own facilities.

There are good state special schools that can provide for children with severe special needs. But it is those with higher-functioning autism who are left to cope in mainstream school with or without support because there’s nowhere else in the state system for them to go.

My boys, both with Asperger’s, have experienced both mainstream and independent special school. I have nothing but praise for the teachers in their mainstream school; they did their best given the resources and time they had at their disposal. But it was not enough and I am sure they would be the first to admit it. Now at their independent school, they have the vital small class sizes they need, specialist teachers, access to Speech and Language and Occupational Therapy where needed, counselling when required and mentors who keep in close touch with them.

I was told by one SENCo at a good secondary that they could cope with children with Asperger’s and sometimes she didn’t have a problem for ‘months on end’ until something kicks off and it all goes pear-shaped. At our school, this never happens. Things never get out of hand because they are not allowed to. It’s a small school and teachers know what’s going on with the boys so things can’t kick off in the first place. That’s the difference.

My boys are getting the social and key skills training they need to help them cope with the ‘real world’ as well as a good academic education. For them, you can’t have one without the other. I had to work hard to get the LEA to pay for one son and I’m still waiting on the outcome for funding with the other. Until then we’re paying £12,000 a year ourselves which is not easy to find.

The point of ‘inclusion’ is to be included in society when they are adults, not stuffed into a one-size-fits-all classroom in the hope that they may learn social skills through osmosis. That’s politics at its worst, where dogma overcomes common sense and expert opinion.

Well said, Mr Bercow!

I’ve just read in full the House of Commons debate on the second reading of the Special Educational Needs and Disability (Support) bill last Friday. I must highlight one particular section of the bill, introduced by John Bercow MP:

John Bercow: “Hon. Members have referred to the phenomenon of children suffering from autism. We know that children on the autistic spectrum vary greatly, but they all tend to suffer from what is commonly known in the trade as the triad of impairments—lack of social imagination, social interaction and social communication. It is important that we train staff so that we do not continue to experience the problem whereby innocently enough, but very damagingly, professionals in the education sector mistake a disabled child for a disobedient child. When we talk about people on the autistic spectrum being more likely to be excluded from school, let us be clear: that is what is taking place in so many cases. The professionals do not understand that the child is not in any sense a conventionally badly behaved child.

The understanding even of autism, which is a relatively high-profile condition, is too limited. We have to try to stimulate awareness. I was with my young son in a park in central London only a week or two ago. My son has phobias about a number of things, as children often do, and perhaps autistic children do in particular. He is anxious about hand dryers. I have always explained that they cannot do him any harm and are not dangerous, but he hates the sound that they make. When we went to take him to the loo, I said to the park-keeper, who quite properly, has to turn the key and open the loo, “Would it be okay if my son went into the disabled loo?” because I happened to know that it had no hand dryer whereas in the ordinary loo there was one. She looked completely uncomprehendingly at me and at him—I make no personal gibe at her; I am simply making a wider point—and I repeated the question. She said, “But he’s not disabled.” Again, I put it to colleagues that there is an issue of understanding. People often think that to be disabled, someone has to sit in a wheelchair, lack a limb or have a demonstrable and immediately apparent impairment, such as blindness, but children with problems on the autistic spectrum or with speech, language and communication impairments—there is often a close link between the two—can, in some cases, be disabled.”

From one parent of an ASD child to another, well said, Mr Bercow!

Read the whole debate here: Read the minutes from the second reading here

Source: Hansard,

Mother Needs Help For Self-Harming Son

I have just been contacted through this site by Sharon, a mother from Kent, whose son has been excluded from school following incidents of self-harming.

She writes, “My ADHD, ASD, Dyslexic, self-harming son, has just been excluded from school, because they don’t think Luke trying to strangle himself in class or him regularly saying he wants to kill himself, is a good role model for the other pupils. Their answer, discriminate (against) Luke for his disability. He needs support, not rejection and that’s all this exclusion is to him, rejection!”

This is apparently the second time Luke’s school has excluded him. His mother, Sharon, believes it is not Luke’s fault but it is because the staff in his mainstream school are not trained to deal with ADHD or Autistic Spectrum children.

Sharon is at her wits end. She says, among other self-harming incidents, her son has also tried to hang himself in the school’s P.E. cupboard. I have recommended that she contact SOS!SEN. Luke has been refused a Statutory Assessment Kent LEA and his parents have appealed to the SENDIST tribunal, which will be heard later this year.

Sharon says, “It looks like Luke will not have a secondary school to go to this year. The tribunal is only for a Statutory Assessment, then we need to go through the whole process yet again for a statement! We have already been to CAMHS for over a year now. No counselling, he was put on a waiting list for a ASD assessment, but there was a 13 month waiting list for that. The last time we went to CAMHS a new Dr. saw Luke and we now have a diagnosis of ADHD & ASD tendencies. Were awaiting a dyslexia test, and counselling for the self harming, which is quite evident to everyone, but they chose to ignore it, or put it down to bad parenting!”

Sharon says that Luke’s primary school failed to get him the help he needed and his problems are now worse as a result. I don’t know all the details of Luke’s case but it certainly seems to be an impossible situation to be in. However, it isn’t sadly, unique. Why is it that children in severe need of help with psychological problems are so often failed by those professionals around them?

I send my best wishes to Sharon and hope she manages to get the education and counselling for Luke that he deserves. If anyone reading this can offer free legal or medical advice to sharon, please contact me at info@specialneedsjungle.co.uk or make a comment below. Thank you.

Great News – A Statement!

Got the news we had been waiting for today – Son1 has got the Statement of Special Educational Needs we had applied for. Don’t have all the details yet and we still have to sort out placement (which if I have anything to do with it will be his current school).

This time last year the head of our school’s Learning Support department told me I should apply for a statement for Son1. I thought she was mad, because he is achieving well although his educational profile is uneven and his progress is affected by his social and communication difficulties caused by his Asperger Syndrome. Still, I thought, she wouldn’t say it if she didn’t mean it. We had been through the process before withour younger son and he is now funded at their independent special school by the Local Education Authority and I didn’t relish another trip down the same road. Still, I reminded myself, it’s not for you, it’s for my boy, took a deep breath and plunged in.

I started out by applying for an assessment, which was initially turned down (see earlier post). After they reversed the decision and carried out an assessment, it went to the area special needs panel yesterday and the news came through that he had been given a statement.

It does beg the question, why was he refused an assessment and then is given a statement and I think this is largely down to the ‘new broom’ approach at the local LEA.

I now have to convince them that paying for him to attend his current independent specialist school is the right thing to do, so no time to waste! It does show however, that if you do your research, persevere (like I said, I started this path a year ago) and you are sure of your case, then you can come out with the result you believe your child should have.

It may take longer than a year for some, depending on whether you need to appeal, but I was originally told neither of my sons would get a statement and now they have one each. I used the methods I have described on this website (see links at the top of the page) both times. So, anyone reading this who is onthe same road, take heart and don’t give up!

See the outcome here

New SENDIST rules

At the same PWP workshop, Simon Oliver, Deputy President of Care Standards Tribunal and judicial lead for SENDIST management team gave a presentation about the new SEND rules. He wanted to set minds at rest about the changes, particularly to the notion that all evidence had to be in by the two-month deadline. He said as long as you appealed by the deadline and told them when the evidence would be available, that was okay.

He also spoke about Case Management – the process intended to provide clarity at an early stage about what needs to be done and by whom, to ensure the Tribunal has all the information required. These include telephone hearings where it might be possible for the sides to be heard by the judge over the phone and the matter to be resolved before a Tribunal hearing.

Among many others, he made the following points:

  • At Tribunal, parents must set out in as much details as possible what it is they want from the LEA and for their child.
  • Appellants should note the new 5pm deadline for appeals, rather than one minute to midnight as previously.
  • The Tribunal is not bound by LEA policies, but by the law governing SEN education.
  • The views of the child concerned will be taken into account
  • Trainees would now be allowed to be observers, as long as permission is sought.

Simon Oliver said that he firmly believed the new rules meant that fewer cases should actually end up at Tribunal and fewer cases would have to be adjourned because of missing documentation. Updates on the process changes canbe found at http://www.tribunals.gov.uk/Tribunals/News/news.htm

Surrey to review SEN Assessments

I recently attended a Partnership with Parents workshop in Surrey. The subject matters were an explanation of the new SEND rules given by one of the co-chairmen,an update on the Lamb inquiry and a presentation from the new Head of Surrey SEN, Debbie Johnson, asking ‘Why do so many parents appeal against Surrey’s ‘Refusal to Assess’ decisions’.

I was particularly looking forward to the latter, as although my younger son is statemented, my eldest son had recently been refused an assessment by Surrey. Ms Johnson was a very impressive speaker and was concerned about Surrey’s position at the top of the charts for councils that have appeals registered against it. Much to the surprise of many in the room, she said that what should be happening is that if Surrey LEA was not going to defend its decision at the SEND Tribunal or thought it might give way if an appeal was launched, then it should actually not be refusing to assess in the first place. This was new! Someone with common sense! We all sat up a little straighter.

Ms Johnson said there was a lot to be done in Surrey and the feedback she was getting was that parents weren’t being listened to, the process wasn’t helpful and she was going to change that. She said the changes had to ‘unbend the system’ and make statements ‘fit for purpose’. She would be disbanding panels that took parents around in circles and stop decisions being made that were not clear for either the parents not the authority.

It also appeared from figures she presented that, that in line with the large number of refusals to assess was an equally large number of pupils in Surrey diagnosed with ASD. Could these stats be related? Could it be that a lack of expertise within county provision in the field of high-functioning Autism and Asperger’s, coupled with an increasing number of parents unwilling to go down without a fight is at the root of Surrey’s large number of appeals? As Hong Kong Phooey would say .. ‘Could be!’

Ms Johnson then described the difficulties faced by a highly intelligent child with Asperger’s in a mainstream setting. She described my son to a tee. Afterwards, I spoke individually to her and she agreed to visit my son’s case again.

And guess what? True to her word, this week I heard that the decision has been reversed, my son is now going to be assessed and I am so relieved that this part of the application is now resolved. There was also additional evidence I presented to them as part of the reconsideration and I am sure this made some difference; having been turned down I had sprung into action and prepared an fulsome appeal so I was able to send it to them to see if we could avoid the necessity of going to Tribunal and it seems this has had an effect. The lesson is, if you believe strongly in your case, DO NOT give up! Those who make the decisions are only human, just like you, errors can be made or minds can be changed if you provide a convincing enough case. But you have to put the effort in – don’t ask and you don’t get.

Back at the workshop, in spite of her ‘new broom’ presentation, Ms Johnson wasn’t let entirely off the hook – many parents had serious grievances about the LEA’s past practices, including one family who had been threatened with costs (illegally) if they went ahead with a Tribunal hearing the next day. To her credit, Ms Johnson tackled the issues head on and took the particular case mentioned extremely seriously. I might pity the hapless LEA employee who made the threat if it hadn’t been such an unethical thing to do in the first place.

I left feeling vaguely cheered, though it remains to be seen how much difference Ms Johnson’s new broom makes to the way Surrey carries out its practices. I, and parents like me, will be watching closely.

See the next post ‘The SENDIST Tribunal’ for information on that part of the workshop.

Meridian TV Special Needs update

This is an update on the Meridian TV items aired last week. There was so far been around 150 posts from parents, almost all who feel they have been let down by their LEAs. Meridian’s Christine Alsford writes at http://blogs.itvlocal.com/Meridian/2009/02/11/struggling-with-special-needs/

“We are planning a follow-up piece based around teenagers for later this week. So don’t forget to tune in – we’ll be posting the report on the website too. We are persevering with this because so many of you are telling us how worried you are about provision at secondary level, and voicing your concerns about children who have been excluded and are going to end up with no qualifications and an uncertain future. But we also want to try and put together a whole board of photos of as many people as possible who have contacted us about their situation. This is to try and show the full scale of the problem and the sheer number of people who have contacted us. Please can as many of you as possible e-mail to us either a scanned picture of yourself and your child with special educational needs or just of your child. Please be aware that these will be used in a forthcoming broadcast and on the web so you should be happy for you child’s image to be transmitted. Please label them carefully –we will not be using surnames, and we won’t be saying what area they come from. Please just give their age, their learning difficulty and Christian name. The e-mail address to send them to is specialneeds@itv.com Many Thanks -Christine Alsford”

*Update note – Meridian are updating their website so this is not available at the moment

Meridian TV item on Special Needs Education

Last night, Meridian TV in the south, featured the first of two parts of an item on Special Needs provision. You can see it here: http://blogs.itvlocal.com/Meridian/2009/02/11/struggling-with-special-needs/ Reporter Christine Alsford visited two families whose children have Asperger’s Syndrome.

By this morning, 41 people had left comments on their blogsite about the site; almost all were affected by the issue and had faced ignorance, resistance and refusal by LEAs to get the most approprate education for their children. What amazed me was the Education Minister who said “Well when they grow up they have to function with regular people in the real world” or words to that effect. Yes, and that’s WHY is is vital that they get the proper education and social skills training as children to enable them to be full members of society! Sheesh! And that attitude epitomises the misunderstanding politicians have about Special Education. Is it any wonder we have to fight when the people making the policy have no idea what they’re talking about?

Note: Meridianis updating its website and this is not available at the moment

SEN Assessment Form Part 2

Further to the earlier blog ‘The SEN Assessment Form – Yikes!’ I thought it might be useful for some people to provide a template to help people get their thoughts down so you’re not facing a blank piece of paper. You can download it below, in MS Word format. If you need it in pdf format, just email info@specialneedsjungle.co.uk and I’ll be happy to send you one.

where-to-start (MS Word doc)

The SEN Assessment Form – Yipes!

A few people have mentioned to me how daunting they find the form that comes for you to fill in to apply for a Statutory Assessment for your child. They’re worried they’ll forget something, they won’t phrase what they want to say in the right way, or that they’ll just do it all wrong and blow their chance.

I don’t know how every LEA approaches the application; whether they all send out a form or whether some do it another way. Ours send a form with questions and boxes to write in your answers as a guideline to help parents know what to include. The LEA has made the form in the first place because they do actually want to help find out what a child’s issues are. The problem is, it often makes the task more difficult because some people may think that’s all they can put in, or leave stuff out that needs to be in because there was no obvious place to put it or stop at the end of the box because they think that’s all they’re allowed to write.

I would suggest putting the form to one side, sitting down at your computer or with pen and paper and just writing your child’s story. You, bar no-one, know them the best. You are the one who has agonised over your child’s progress, or lack thereof, you are the one who has more than likely wept over the fact that they don’t fit in or just can’t get to grips with things that other children have no trouble with at all.

Start at the beginning, from the day they were born. Note down any problems with the birth, unusual development, recurrent medical or social problems, how they get on with others and with school work. You will be amazed how much you can write and you’ll probably shed a few more tears as you do it as well.

If you then want to fill in the form, you’ll be able then to pull things out of your narrative to put in the spaces. Or just leave the form out altogether and redraft your narrative making sure you’ve covered all the questions on the form as well as everything else you want to say. This is your chance to put your child’s case. If you’re turned down for assessment you will be able to appeal, but the more relevant information you put in now, the less likely it is that you’ll have to.

Refer to reports your child has had done and send copies of them along as well with your application. Go through the reports you have and pull out the parts that strengthen your case.

For example. “In his assessment on 21/4/06, Dr X remarked that Johnny has great potential but his lack of social skills was likely to adversely affect his learning. Please see report (numbered 7) enclosed with application.”

Then number that report number 7 or whatever number you’ve given it, and enclose it with your application. You could then back this up with remarks teachers have made to you or with comments from Johnny’s year end report, which you will also number and enclose.

If their writing is a problem, send in samples of it. If reading is a problem, write down the level they’re reading at or perhaps that they avoid reading because they find it frustrating. If they are desperately unhappy because they are bullied because of their differences, mention this as well. If their frustration makes them angry and violent or unpredictable or friendless, write this down too.

But my best advice when approaching your application is to tell your child’s story first and foremost. You don’t need to be a world class writer, but do use the spell checker on your computer or get someone else to read it over for you if you’re unsure. Enlist the help of a group such as Parent Partnership if you’re lacking support.

No one knows your child like you do. Others, such as teachers, will have a different and valuable perspective, so speak to them and include what they say in your application. The SENCo will be asked in any event by the LEA to fill in their side of things but speaking to them yourself will inform you of things you may not have known.

Update: I’ve just added a help template under “SEN Assessment Form Part 2

Get to Grips with the SEN Code of Practice

When you dive into the world of SEN provision, you will undoubtedly come across a document called the SEN Code of Practice. This is the government document that spells out to schools and LEAs what their duties are regarding special education.

LEAs, under the Education Act “must have regard to” the Code of Practice. For parents, this means that it’s a document that you must get to grips with if your child has special educational needs.

For example, the SEN COP says that when a decision is made about whether to make a statutory assessment there is one critical question:

“7:34 In deciding whether to make a statutory assessment, the critical question is whether there is convincing evidence that, despite the school, with the help of external specialists, taking relevant and purposeful action to meet the child’s learning difficulties, those difficulties remain or have not been remedied sufficiently and may require the LEA to determine the child’s special educational provision. LEAs will need to examine a wide range of evidence. They should consider the school’s assessment of the child’s needs,including the input of other professionals such as educational psychologists and specialist support teachers, and the action the school has taken to meet those needs. LEAs will always wish to see evidence of, and consider the factors associated with, the child’s levels of academic attainment and rate of progress. The additional evidence that authorities should seek and the questions that need to be asked may vary according to the child’s age and the nature of the learning difficulty.”

Note it does not mention that they need to be so many years behind or that if they are above a certain level then they don’t need to be assessed. It is about the child themselves and their progress, rather than where they come on certain scales or test measures. This is particularly true for children with hidden disabilities such as Asperger’s or Dyslexia, who are often very bright, but whose achievement could be significantly higher and more in line with their potential if they got the right help.

Also remember that KS1 tests are teacher assessed and may not be an accurate reflection of what your child is achieving. Teachers have been known to misguidedly inflate actual test scores for a child who has a difficulty with recording answers because they know what the child is capable of verbally. But when you come to apply for assessment, the inflated score actually counts against you because although the Year 2 teacher has made an accurate recording of the child’s natural ability, it is not an accurate reflection of their achievement.

Download the Code of Practice from the Teachernet website. And then read it and use it to help your child get the help they need. This is, I know, easy to say, because it takes time and energy to get through it and if you’re working a long day and dealing with a child with special needs you’re probably short on both those things. But the document is fairly well set out, in sub-headed chunks to help you find what is relevant to you. To help, the relevant section for Statutory Assessment is from page 80, or 87/217 on the pdf document.