Chinese Whispers and Garth’s Uncle

As you may have read on Friday, Special Needs Jungle has a new regular contributor in Debs Aspland, the director of Kent PEPS and parent of three children, all with disabilities. Today is her first post about the essentials of good communication.

Communication:  the imparting or exchanging of information or news

It sounds so easy.  It requires one person (the sender) to give another person (the recipient) a piece of information.  The communication is complete when the person receiving the information understands what the person giving the information has said.  So why is it so difficult?

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When the words move by themselves – it could be Visual Stress

I met a lady on Twitter a while back, Michelle Doyle, who was talking about ‘Visual Stress’. I wasn’t really clear about what this was so Michelle has kindly written about it for Special Needs Jungle about how it affects her son and her fight to get him the support he needs. Here’s her story:

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After years with my son struggling with his reading and writing and being given the impression that he was lazy in class, in Nov 2009 at the age of eleven, he was given a coloured overlay by a teacher at his Primary School.

After I questioned him about this, I was shocked and extremely surprised to find out that when he looked at a page of writing it moved around the page. My son has Visual Stress, the movement of letters on a page of writing and there is a fairly long list of symptons that are associated with it.

I spoke to his Optician who confirmed that my son has Visual Stress, Visual Stress – Meares Irlene Syndrome, Scotopic Sensitivity Syndrome, or Visual Dyslexia the different names I have heard it called. He has to have two pairs of glasses one for everyday use, i.e. going out  and a coloured pair for his educational needs.  He also has severe long-sightedness.

Precision-tinted Lenses are only available by private prescription and the cost can vary from area to area by quite a considerable amount.

I got in touch with the local Primary Care Trust and after about 6 months I finally managed to get a second voucher issued for his distance vision to be put into his tinted lenses. This is also now done for all the children in my area who suffer from Visual Stress.

I have also been in touch with my MP.   She wrote to the Secretary of State for Health and the Chief Executive for NHS in my area.  The replies basically told me what I already knew about the vouchers for children etc. I do not feel that the question of extra funding for the vision of these children was answered at all.   Basically I felt as though i was being swept under the carpet.  [Currently vouchers will not cover the cost of tinted lenses – only the prescription lense]

My MP wrote to the Group Director for Social Care and Learning. His reply gave me the impression that he didn’t have a clue what I was talking about. I then sent an e-mail direct to the Group Director of Social Care and Learning, begging of him to do his homework and find out more about this condition. I sent him two examples of Visual Stress so he could see for himself the reason’s behind these children struggling so much with reading and writing.   Once again I received a reply stating what I already knew, with no offer of looking into this more.

I also got in touch with the Education Dept. for Disabled Children.  They then referred me to The Visual Impairment Coordinator for my area. She told me herself that what my son had wrong with his eyes is not dyslexia. She described it as Scotopic Sensitivity Syndrome or Visual Stress. Even she had to research Visual Stress before she got back to me.   She told me not to force my son to read as the stress he feels, makes the stress on his eyes worse and therefore the Visual Stress symptoms get worse.

When my son first started year 7 he had a reading age of 7.2 years even thought he was 11 years of age. Now at 13 years and year 8 he has the reading age of 9.5 years. [this is an amazing achievement!] I was told by my son’s school that the Education Authority in my area would not issue my son with a Statement of Educational Needs.   So I went directly to the Head of SenCo in my area.  I told them that he needed and I wanted him to have a Statement of Educational Needs.  He was assessed and It took approximately three months for him to be issued with a Statement.

The school were very surprised that I had managed to get a Statement for him.

I was told that my son also had dyslexic tendencies I asked the school about getting him assessed; they told me that my Education Authority didn’t recognise Dyslexia as a learning disability. I told them that I wanted him assessed. Strange that if my son goes to College or University all of his sight problems will then be recognised.

In the mean time I have started a group on Facebook called Parents of Kids with Visual Stress.   This is where all our members can discuss the problems that they are having and also get ideas of how to tackle things from other people. We are also there to support each other with our fight.

I also have an e-petition running for the funding of tinted lenses for visual stress.   I need to get 100,000 signatures for it to be discussed in Parliament. The more votes that we can get the quicker the help can be put in place to help our children.

So far it has felt as though I am being pushed around an ever increasing system of managers etc.  Yet not one of these people are able to tell me if my son can get any help towards funding the glasses he so obviously needs. Without these tinted lenses my son will never be able to read and write at the same level as his peers.

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.

SEN – The Next Steps – My views & Meridian Tonight feature

So, there’s been much furore today about the headlines for proposals that  450,000 children be ‘struck off’ the SEN register. This is a bit of a stupid headline, to say the least. I was interviewed by Meridian Tonight (clip at end of post) about it for my views as a parent of SEN children.

The story was linked to this announcement from the DfE today that continues on from the SEN Green paper on Special Needs and Aspiration, that was trailed last week. It seems that any story about children with special needs is pounced upon by the haters and the critics. Oh, those bad teachers. Oh those terrible parents. Oh those benefit scroungers. I can guarantee you that none of those people who make moronic comments like that are either a teacher or have a child with special needs, which means that they should, quite frankly, shut up.

The key points in today’s “Next Steps” announcement were:

  • The new Education Health and Care Plan (EHCP)  will eventually replace the statement and will last from birth to 25 for those children who need it. The EHCP will be a “single assessment process, … ensuring that families have confidence that all of the different local agencies – across education, health and social care are working to together to meet their needs. This will stop parents having to have to undergo repeated assessments with different agencies.”
  • Personal budgets: all families with an approved education, health and care plan will have a legal right to request a personal budget, if they choose.
  • Joint commissioning: LAs and clinical commissioning groups would have to put arrangements in place to ensure that services for disabled children and young people, and those with SEN are planned and commissioned jointly.
  • School choice: parents whose children have an education, health and care plan would have the legal right to seek a place at any state-funded school of their choice – whether maintained, academy, Free School or special. LAs would have to name the parent’s preferred school so long it was suitable for the child, did not prejudice the education of other children or did not mean an inefficient use of funds.
  • Local offer: all LAs would publish a ‘local offer’ of  support, so parents would know exactly what is available instead of having to fight for basic information.
  • Mediation and the tribunal and children’s right to appeal to a tribunal: introducing mediation before Tribunal for disputes and trialling giving children the right to appeal if they are unhappy with their support.
What some sections of the press jumped on was that the statement from the DfE mentioned an OFSTED report from 2010 that claimed many children were wrongly identified with SEN. I touched on the reasons for this in my post on Saturday, so you can read it there. But to say that this happens often or even routinely is a huge exaggeration.
It is quite right that the government should seek to provide the most appropriate provision for children whether they have actual SEN or whether they need nurture groups because of family difficulties. If they can bring forward the funding and expertise to put this in place, then they should do it as soon as possible.
What they should NOT do as soon as possible (ie, this summer) is think that their policy can be informed by any results from pathfinder trials of the EHCP. In Surrey, this is still at a very early stage – ie, we, at Family Voice Surrey, are not even sure that any families are yet trialling it, so to have any firm conclusions drawn by this summer is optimistic in the extreme.
Tomorrow, Surrey has another day-long EHCP meeting that myself and my FVS colleague, Angela Kelly, will attend with great interest.
What must NOT be done is for these plans to be rushed through for political reasons – we are talking about the futures of some of society’s most vulnerable and if you’re going to shake up the system it should be done properly, in a considered manner.
Anyway, now for the light relief. Christine Alsford from Meridian (where I cut my TV reporter teeth) came over and filmed me and Son2. Son2 only agreed if he could be in his BodySox and the crew thought this was a genius idea.  What do you think?

SEN Green Paper: Ministerial “Detailed response” expected next week

So, next week government ministers will set out their detailed response and reform timetable as their next steps in the SEN Green Paper. They’ve been saying it’s ‘imminent’ since February, so we’ll see what they’ve come up with.

Ministers say they’ve committed to making all the necessary legal changes to put in place reforms proposed in the Support and Aspiration Green Paper and yesterday, in the Queen’s speech, they pledged that the planned Children and Families Bill would deliver better support for families. It would introduce a single, simpler assessment process for children with SEN or disabilities, backed up by new Education, Health and Care Plans – the same EHCP that Surrey, as a pathfinder council, is setting up now. As a member of parent-carer forum, Family Voice Surrey, I am one of two parent reps, along with FVS Chair, Angela Kelly, for this pathfinder stream. Our next EHCP meeting for this is next week, so it will be a very interesting day, I think!

The SEN key measures announced yesterday were:

  • replacing SEN statements and Learning Difficulty Assessments (for 16- to 25-year-olds) with a single, simpler 0-25 assessment process and Education, Health and Care Plan from 2014
  • providing statutory protections comparable to those currently associated with a statement of SEN to up to 25 in further education – instead of it being cut off at 16
  • requiring local authorities to publish a local offer showing the  support available to disabled children and young people and those with SEN, and their families
  • giving parents or young people with Education, Health and Care Plans the right to a personal budget for their support
  • introducing mediation for disputes and trialling giving children the right to appeal if they are unhappy with their support.

The legislation intends to draw on evidence from all the 20 local pathfinders set up in last September. Certainly, in Surrey, we have a long way to go before the LEA are in any sort of position to make evaluations on outcomes. This is despite the government saying that interim evaluation reports are due in summer and late autumn 2012, with a final report in 2013.

IPSEA, the charity that supports parents though the SEN process said, “It is essential that the Pathfinder pilots be given a rigorous evaluation before any legislation in this vital area goes on to the statute book. The pilots started only in late 2011, and have two years to run. It seems premature and potentially unsound to rely on the evidence from these Pathfinder pilots one way or the other before 2014.”

There are huge changes in the offing and no one is really sure, as yet, how it’s all going to work out. There certainly is an enormous amount of work being done by many committed people all over the country in the different aspects of the proposals.

I look forward to seeing the detailed response and finding out how much they’ve listened to what people at the SEN coalface really think.

Catch up with special needs news you may have missed this week

Another Friday is here – just one week to go before my boys break up for an almost-month-long Easter break. Here’s my weekly round up of the best special needs and disability stories and blogs I’ve spotted this week. As ever, if you have one to share, list it in the comments of this blog so others can enjoy it!

If you enjoy the Special Needs Jungle site, or have been helped by it, I’d be delighted if you would please nominate specialneedsjungle.com in the BritMums Blogging Awards in the CHANGE! section

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

Exciting news – a conference speaking invitation

I have exciting news – I am to be a keynote speaker at the forthcoming SEN Conference, Towards a Positive Future that is to take place in Newbury in June. I will be talking about being a parent of two sons with autism and how parents-carer forums such as Family Voice Surrey, of which I am a committee member, are helping to shape SEN services with the SEN Green paper pathfinders. Surrey will be trialing, among other areas, the proposed Education Health and Care Plan for which I attended a day-long meeting yesterday.

Apparently, children with existing SEN statements will not automatically be moved to an EHCP although their parents can request it. They may be moved at a transition point if appropriate, however.

It is clear from the meeting that there is much work to be done and in a relatively short time as it is expected the new procedures will be brought in by 2013/14. There are some positive proposals and still a lot of detail to be worked out, but the general principle is that the child and family should be at the centre of the process. It’s not very clear to me why this isn’t already the case.

The whole system at the moment is adversarial and there is much distrust on both sides, so to make the new process succeed there needs to be a major cultural shift towards working together for the benefit of the child. At the moment LEAs are (rightly or wrongly) seen as penny-pinching, budget-not-child focused parent-haters who are determined to give as little as they can get away with. LEA staff, meanwhile see some parents as just trying to bag a statement to get their children into the best schools that cost the council hundreds of thousands of pounds a year when (the LEA feels) local provision would do just as well. There are many parents left vastly out-of-pocket by legal fees as they pursue the most appropriate option for their child.

Personally, I can’t understand why any parent would head into the stressful, potentially expensive jungle of statementing unless their child has significant needs that are not being met within current school resources – I mean, why would you put yourself through that? Every parent I have encountered who is seeking a statement has experienced their child going through years of difficulties, under-achievement and unhappiness before they become convinced that this is the only route. I’m sure there are exceptions, but they must be just that – exceptions.

Anyway, by the conference in June I expect some parents will have been recruited for the trials and we will have more detail of how the final system will look. Other speakers include the National Autistic Society president, Jane Asher, Janet O’Keefe, editor of “Towards a Positive Future”, Educational Lawyer, Clive Rawlings and Kevin Geeson of Dyslexia Action among others.

Below is a link to a booking form that you can use with all the details on.

Towards_a_Positive_Future_Conference_2012_flyer

Poll results – Should children with Asperger’s automatically be statutorily assessed?

Last year I published a poll on this site asking whether people thought children diagnosed with Asperger Syndrome (quick, use the term before it’s abolished!) should automatically receive a statutory assessment by the local educational authority.

I posed three potential answers:

  1. Yes, because teachers aren’t trained to spot underlying difficulties
  2. No, we should just see how they get on
  3. No, we should trust the school to decide what level of help they need

Now, I assume that most of my readers are parents with SEN children but there are also readers who have a professional interest in SEN, so I admit that the results may be skewed somewhat. Having said that, a whopping 96 per cent of respondents thought that AS is so complex in its presention that children with that diagnosis should receive a professional, school-based assessment to determine their special needs.

This isn’t to say that they should all be statemented (or get an EHC Plan as it will be), but most respondents believed that it is important to understand what their needs are and how they can be met to level the playing field, giving them an equal chance of success at school and beyond.

3% though we should see how they get on and just 2% thought that teachers were best placed to decide the level of help required. There were more than 150 responses.

I am a firm believer that school success and success as an adult does not depend on academic achievement alone. We all hope that our children, whether they are ‘normal’ or whether they face additional challenges, will grow up to be rounded, socially adept individuals. Even in this age of web interconnectedness, knowing the correct social response in a face to face meeting is still vitally important. We are, after all, social beings.

I know this only too well from my own sons. Even though our eldest is incredibly bright, we could see that he had many social difficulties and these, in turn, affected his school experience and academic achievements.  We did not want him to turn out to be an angry alienated genius and, thanks to interventions, support and the right school, he won’t be. Without an assessment that I fought for and drove forward, we might still be asking ourselves.. but he’s so bright.. why does he do this or that, it makes no sense.. (I’ve talked about his issues previously, with his agreement, now he’s a teenager I have to be careful what I say).

I say whatever you call Asperger Syndrome in the future, and whatever you replace statements with, when parents suspect their child has social difficulties they should always raise the issue with teachers and do their own research as well.

Some difficulties experienced by children with high functioning ASD can seem obscure and hard to verbalise. Yet if they go unaddressed, they can end up having a long-term negative impact on a child well into adulthood. I believe that every child on the spectrum should have an Ed Psych or Outreach assessment so that teachers who are not experts in autism (nor would most claim to be) can be given help to ensure that every pupil they teach has a fair chance of a decent learning experience.

Questions please for my stint at TheSchoolRun

TheSchoolRun website is packed to the gills with great ideas to help your child’s learning. It’s bright, colourful and is a fantastic resource. The site aims to demystify school for parents, giving you all the tools you need to understand what and how your child is learning at primary school. Their informative articles, packed with advice from experts and practical tips from teachers, help parents get to grips with new educational techniques and feel confident about supporting their kids’ schoolwork.

And the week starting 16th January, they’ve kindle invited me to host a Question & Answer board about Special Educational Needs statementing. I’m not a legal expert so I won’t be dishing out legal help but I will certainly be able to offer some great signposting and answer lots of your statementing queries. The board has already begun registering questions that I will be answering as best I can from next week.

To take part, head over to this part of the site. It’s a members site so you’ll need to register if you haven’t already – and if you’re new, a huge amount of great resources awaits you from the site as a whole. Even if you don’t have a specific question, you may find someone has asked a question you’d like to know the answer to.

Special Educational Needs stories of the week

This will be the last one of the year as i take a break and concentrate on my boys for Christmas. Have a great Christmas. If you do something different to accommodate the needs of your child, would love to hear about how you manage with the festive season.

Don’t forget my Christmas Giveaway – you just have to go to www.facebook.com/specialneedsjungle and ‘like’ it and you’ll be entered in the draw for a copy of my SEN book, Getting started with Statements – even if you don’t need it yourself, you may know someone who does.  If you already like the page, just leave a comment asking to be entered.

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

SEN Lawyer Links

If you are looking for additional help, there are free services such as IPSEA and SOS!SEN as well as the NAS Advocacy Service is your child has ASD. You may decide, however, that you would prefer to use the services of an SEN Expert Lawyer. Below are the names of some such experts. If you are an education lawyer not on this list or you know of a lawyer that you can personally recommend, please contact me

  • SEN Barristers –  Gulshanah Choudhri has a child of her own with Down’s Syndrome, so as well as legal expertise, she has a personal understanding of the SEN issues. She stresses that, due to recent changes, she can offer a full service from initial consultation through to Tribunal, if necessary.

“With Gulshanah fighting in your corner and bringing her incisive mind and laser like cross examination skills to bear upon proceedings, you can feel confident that she will expose inconsistencies in the expert witnesses of the LA. I for one have had the privilege of seeing her in action and cannot commend her services highly enough.” Barrie Griffiths, Portsmouth

  • Douglas Silas Solicitors -I have met Douglas and he is dedicated to the SEN cause. He also has an extremely informative website. (North London based)
  • SEN Legal  Principal Solicitor is Melinda Nettleton and she is supported by Karen McAtamney and Adam Ottaway Friel. (Suffolk based)

“SEN Legal represented us and managed to secure us a placement at More House School. We definitely couldn’t have done it without them. Sally Brockaway

  • Maxwell Gillott – Quoted in Chambers and Partners 2011: Education: Individuals, Elaine Maxwell has been advising on provision for severely disabled pupils. Sources say she has a “phenomenal understanding of the issues that parents dealing with SEN face.” (Various locations)
  • Anthony Collins LLP I have met Inez Brown of this company and she is very well informed, highly experienced and committed. They are based in Birmingham
  • Children’s Legal Practice “We have acted in connection with numerous appeals to the Special Educational Needs & Disability Tribunal. These appeals have included cases involving statutory assessments, contents of statement, ceasing to maintain statements and Part 4 of the statement.” (Hampshire based)
  • AM Phillips “As both a professional, working within the field of education law, and as a parent of a son with special educational needs, I understand the pressures that parents experience on a daily basis.” (London, Wales)
  • Sinclairs Law “leading experts in the field of Special Education Needs (SEN) & Education Law, acting throughout England & Wales.” (Birmingham, Cardiff, London based)
  • JMW  “JMW Solicitors are experts in all aspects of special educational needs law; for over a decade JMW Solicitors’ medical negligence team has been dedicated to this tricky area of the law.” (Manchester/Salford based)
  • Moore Blatch “Let our wealth of experience in this niche area of law work for your child” Leena Hurloll, Senior Solicitor (South)
  • CDLaw (Robert Love) “Christopher Davidson’s experienced education law team is dedicated to helping ensure that your child receives the education he or she needs.” (Cheltenham based)
  • Fisher Jones Greenwood LLP “Fisher Jones Greenwood’s education law advice service is available to anyone with concerns about a child’s or their own education.” (Essex based)
  • Turners Solicitors “We specialise in representing parents of children with special educational needs whatever their diagnosis” (Wales based)
  • Langley Wellington “Langley Wellington has a very experienced team dedicated specifically to all aspects of education law.  The team’s success rate in SENDIST Appeals is around 90%.” (Gloucester based)
  • Match Solicitors “Match Solicitors are experts in assisting children with special educational needs.” (London based)
  • Stones Solicitors “Do you  have matters relating to schooling which you are concerned about or do you know others who might? If the answer is ‘Yes’, then Stones is able to offer advice on all Education Law matters.” (Devon based)
  • Allen & Co “Education law is our primary area of expertise. Advice and help is provided on school admission appeals, exclusions, school transport, special educational needs (SEN), equality and discrimination matters and more general education or school issues.” (Buckinghamshire based)
  • Education Advocacy “Education Advocacy is a specialist legal consultancy, which provides legal support and guidance to parents of children with  special educational needs.” (Somerset based)

“We used Nigel Pugh of Education Advocacy. He was very reasonable and I do not feel the outcome would have been the same without him. My son is now fully funded at a special school”  J Faux

  • Advocacy & Mediation “We are experts in supporting parents and carers of children with special educational needs and disabilities”

“I can highly recommend SEN advocate Fiona Slomovic of Advocacy & Mediation. Fiona helped secured a place for my AS son at a Cambian AS-specific school with a waking day curriculum without going to tribunal. I recommend her to everyone. She is highly experienced and wins most of her tribunals” A Elliott

My article in SEN Magazine: Can teachers recognise SEN in bright pupils?

I have an article in the current issue of SEN Magazine, entitled Can teachers recognise SEN in bright pupils.

Me & my boys circa 2003

Both my sons, Giorgio aged 12 and Luca, 13, have Asperger’s syndrome, and both are extremely intelligent. Luca, however, struggled with understanding the norms of behaviour, was prone to emotional or physical outbursts and was virtually friendless. He needed to be first in everything and this constant rushing affected the quality of his work. Giorgio, a gentle soul, could read at three, but still struggles to write legibly. Group work was impossible and his original way of thinking made it hard for him to follow instructions. One teacher remarked that, “He has informed opinions which he expresses well but they are often tenuously linked to the subject matter.”
Before they were diagnosed, their infant school tried behavioural charts for Luca, and eventually, after I insisted, a literacy software programme for Giorgio. However, when you don’t know why a child is experiencing problems in the first place, it’s difficult to put the right help in place….

To read the rest of the article, click here (SEN Magazine website)

One Mum’s Statementing Views

Here is a parent’s view of the statementing battle for her son and her advice about the process. I wish I could say this mother’s story was unusual, but other parents will recognise features of it in their own efforts to get the right education for their children. Thank you to the mum who has kindly allowed me to publish it here.

“Our first hurdle was with the school not recognising or knowing how to cope with a processing issue – if the child can’t process what the teacher is saying, learning doesn’t have a chance. As parents, it took us a long time to realise the implications of this at home and we experienced outrageous behaviour not realising that the child wasn’t just being belligerent but that his understanding of what words meant and the complexity of how they were presented to him were totally beyond his comprehension. Any number of parenting books didn’t fit the bill until we found ‘The Explosive Child’ by Ross Greene.

As soon as you feel your child has a learning issue, make sure you keep notes of meetings you have with the school Senco and email them to them after each meeting to confirm that your recollection is correct. (Also ensures that they have a record on file.) Challenge learning plans – if your child isn’t meeting the targets on learning plans, try to get to the bottom of it rather than allowing the school to gloss over it.

Schools, the School Educational Psychologist and the Council will procrastinate as much as they can – the classic is having to wait weeks for meetings and then having them rearranged at last minute to push them further back. Meetings cost money and budgets are tight so your child’s needs are not the top priority – he or she really does need you to fight their corner. This is really hard for the parent who doesn’t feel particularly articulate or confident but they need to overcome this reticence.

Private tests (OT, Ed Psych, Language, etc) are really expensive – ensure that the recommendations are very clear and quantifiable stating how many hours each week of what help is needed and by what level of professional. Any opportunity to put an untrained teacher’s assistant to provide specialist help will be taken if there is any ambiguity in the recommendation.

SOS!SEN provides a great service in Twickenham. We used solicitor Robert Love because we felt incompetent to fight a case where the school wasn’t supporting the statement application (the teacher wanted to but the school wouldn’t!) One of the most galling aspects of it was when the Council didn’t turn up to the tribunal – surely there should be a case for Councils paying for the cost of the tribunal when they abuse it in this way.”

You can read more stories like this in my new book, Getting Started with Statements. Ebook out now, paperback coming very soon.

 

Special Educational Needs – Getting Started With Statements Unique new parent-to-parent ebook launched to help SEN children with ‘hidden disabilities’ get the help they need.

Today my book on is launched as an ebook. Here is the press release 

FARNHAM, 10th October 2011: A mother of two autistic boys from Farnham, Surrey has published a new book aimed at helping other parents navigate their way through the special educational needs jungle.

While there are other books about the SEN system available, this book, by the creator of the www.specialneedsjungle.co.uk website, Tania Tirraoro, takes a parent-to-parent approach, explaining in detail how to prepare an application for a statutory assessment of special educational needs.

Tania said, “Since I started my website in 2008, it’s become clear how daunting parents find the SEN process. Many parents of children with ASDs or dyslexia are affected by the conditions themselves and need help with organising and getting started on their applications. I’ve helped many parents with their applications and I realised that what they need is not an overview of the whole system that you find in other books, but a basic ‘how-to’, written in an accessible way. That is what I hope I’ve achieved.”

The book has a foreword by SEN campaigner and former parliamentary candidate Maria Hutchings, who famously hand-bagged Tony Blair during the 2005 election over the closure of special schools. It also contains a section on what to expect if you end up at an SEN Tribunal by experienced SEN Advocate, Julie Maynard.

Maria Hutchings said, “I only wish that I when I was going throug
h the statementing process striving to get John Paul the right education, speech therapy and respite for the family, that I had read this book. Being the mother of two children on the autistic spectrum, Tania has a deep sense of empathy for what it feels like when you have to fight for everything to ensure your child’s future. Tania captures that deep sense we all have as mothers and carers, to do the very best for our precious children.”

The book takes parents through the process from a very personal viewpoint with examples from successful applications and relevant quotes from the SEN Code of Practice and Education law.

Tania said, “I’ve been through the process twice and my boys, who both have Asperger Syndrome, now have access to the kind of education they need to help level the playing field in their future lives. ASD is a lifelong condition and they will always battle the difficulties of their Asperger’s, but because I had the ability to present their cases methodically, they got the help they need. Why should other children not have the same as my boys?”

The book is available now in all ebook formats from Amazon Kindle and Smashwords.com. If parents do not have a Kindle, then Kindle for PC, ipad or smartphone can be downloaded for free from Amazon.co.uk. It makes this book accessible to every parent, instantly.

It will be available in paperback in the next few weeks.

About the Author:

Tania Tirraoro is an author and journalist and has already published two women’s fiction novels, This Last Summer and Sweet Seduction, one as an ebook, the other available as ebook and in paperback. She is a former television and radio journalist, having worked as a reporter and news presenter for Meridian Television and NBC/CNBC, and BBC Radio Berkshire among others. She also works as a press consultant for three heart rhythm charities.You can find the SEN site at www.specialneedsjungle.co.uk.
Tania’s author site is at www.taniatirraoro.com

Twitter: @TaniaLT  @SpcialNdsJungle

E-Book Links:

Amazon.co.uk | Amazon.com | Smashwords

Tania Tirraoro can be contacted at info@specialneedsjungle.co.uk

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

Guest Post on Daniel’s Diary

I have a guest post today on the Daniel’s Diary blog, run by the wonderful Sally Huggett. You can read it here: http://www.thecarer.org/?p=804

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!

Journey’s End for our Statement – And a Brighter Future.

Just to update the post about my son getting the statement of Special Needs, we’ve just heard that the LEA has agreed to fund him at his independent special school. Great news and what a relief!

When they issued the draft statement they said they were concerned how he would manage in mainstream secondary.. so they were going to recommend mainstream secondary with support. Now we know, don’t we, that for many children with Asperger’s, it’s not a question of someone sitting with them or being withdrawn into social skills groups for so many hours a week. It is more a constant nudging that they need and a vigilant eye for when things are starting to go wrong.

During my research, I spoke to several mainstream SENCOs (Special Needs Coordinators). They are all dedicated to their pupils and do a good job in difficult circumstances, but one said to me that they sometimes “don’t hear from their ASD students for months until something goes wrong”. She was saying this to illustrate how these students ‘coped’ adequately with day to day school life. All I could think was that at my boys’ school the teachers are in constant contact with the boys and things are never left for months until something goes wrong. Although this teacher was trying to be positive and reassuring, I knew then that my son would end up depressed and unhappy in an environment where he could go unnoticed for months at a time.

Why should he simply ‘cope’ when other children thrive? This is not what I wanted for a boy who is incredibly bright with enormous potential but who is also extremely sensitive with sensory issues and problems with social integration. On the face of it, you wouldn’t think there was anything different about him. But it is precisely when ‘things go wrong’ that you see that he is not the same as everyone else and does not have the coping skills that most children his age have.

This is what More House School teaches him. As well as supporting him academically, it supports his social needs on a daily basis and when they see that he is heading for trouble or he becomes upset, they can help him develop the skills he needs so that when he is an adult, difficult situations don’t throw him off-course. This means that when he leaves school to go out into the outside world, he will be as well-equipped as anyone else to deal with all kinds of situations and different types of people.

If we hadn’t managed to get the LEA to agree to fund him, we would have had to pay £13,000 a year for our son to receive the right kind of education to give him the best chance of a successful life. We had tried mainstream and had found that, with the best will in the world, the kind of support he needed wasn’t available. So why should we have to pay for him to get what every other child in mainstream gets without any bother? We didn’t opt out of the state system out of snobbery. We were, in effect, forced out, because our sons were not mainstream children.

Our LEA seems to have woken up to the fact that it is cheaper and easier to pay for children to go to this particular school than it is to find all the support they need within the state system. If they had to make their own school for high-functioning ASD boys, complex dyslexics (who often have co-morbidities), and children with great Occupational Therapy and Speech and Language needs, they would have all the capital costs to pay on top of  the per-pupil cost. These would include buildings and maintenance, electricity and all those other costs that don’t include teachers and support staff salaries and benefits.

Just paying £13,000, and leaving it up to someone else probably seems like a great deal. We haven’t asked them to pay transport – we moved to be closer so I can easily take them myself every day as I would if they were at any school. This is my part of the deal as transport costs are a never-ending headache for LEAs and I see no reason to add to the burden when I am in a position, and more than happy, to take them myself.

However, although Surrey, our LEA, have done the right thing for both my sons, (and three cheers for them), I know of other families who are having to fight tooth and nail and at great expense to get their local authority to do the same. I know of one child in Hampshire, who got a statement with no argument but despite his severe social as well as physical needs, the LEA thinks he will be able to cope with a mainstream placement against ALL the advice they have received. This is pig-headed stupidity and a game of brinkmanship with parents to see who will blink first. There is no logic to it and when the case gets to Tribunal, Hampshire will lose and will have wasted taxpayers money fighting a case that didn’t need to be fought. The family will have suffered emotionally, financially and completely avoidably.

Hampshire have recognised this child’s needs for OT and SLT in part two of his statement and yet have made no provision in part three of the same document and they think this is acceptable. They think it is okay just to dump him in the local secondary where his needs cannot be met (and the family has the documentation to prove it). Hampshire should know that it won’t intimidate this boy’s mum. She is every bit as determined as I was to make sure her son gets the placement he needs. It is appalling that she should have to put herself under considerable strain to do so. I will keep you posted as to what happens.

Rose Dyslexia report – will it be enough?

Government adviser Sir Jim Rose’s report on dyslexia has been widely reported today. BBC News said, “More teachers will be trained to identify and support children in England with dyslexia, as a report says greater expertise is needed in schools. Sir Jim Rose, who recently reviewed the English primary school curriculum, said parents needed guidance on the help available.  The government says 4,000 teachers will be trained, and online courses provided to help them support dyslexic pupils.Charity Dyslexia Action called it a “landmark report” and a “great step forward” to have a definition of dyslexia which those affected could recognise and accept.

boyworkingIn his report, Sir Jim defines dyslexia as a “learning difficulty which primarily affects skills involved in accurate and fluent word-reading and spelling”.  The report will say dyslexia should not be treated as a distinct category of people, but as a continuum, like other disorders. He is also expected to reiterate that good quality teaching in children’s early years is vital.”

The link to the full BBC report is at the bottom of this post but what strikes me is that it has taken this long for a report to be done. Dyslexia is not new and the fact that it is only now being ‘officially’ recognised is a scandal. Whole generations of people have had their lives blighted because they have had unrecognised and untreated dyslexia. Instead, they have been branded ‘thick’ and have not been able to develop the life chances they should have.

I sincerely hope that this report’s recommendations will be acted upon so that teachers can learn not only how to identify children with forms of dyslexia but know how to do something about it. As I have said before, if the government wants ‘inclusion’ then mainstream teachers cannot just teach the mainstream. If teachers don’t have the access to the funding or training to make their teaching truly inclusive, then once a child is recognised as having a problem, they should be given access to teachers that can help them.

Ten million pounds doesn’t actually seem that much to provide all the help that is required, but it is a start and should be recognised as such.

I am no expert, however, I am of the opinion that some children with ‘continuum’ difficulties such as dyslexia and ASD need a different teaching style altogether that can only be delivered in a specialist environment. I have helped various parents with their statementing battles and have seen quite a few Educational Psychology reports. What seems to be a theme is that the working memory and non-verbal skills of these children is almost always poor, sometimes dramatically so, compared to their basic level of intelligence. This means they have difficulty remembering instructions and sequences, problems with attention and with organisation. These are in addition (though connected)  to the problems they have with making sense of reading or writing or both.

This group of issues will be difficult for a teacher with thirty other pupils adequately to address, however much training they have. They are, after all, only one person and are not superhuman, unless there are government plans to provide funding for that too. Isn’t it better that these children learn together and are taught in the way they learn best? It is great that teachers will be trained to spot Dyslexia – they should also be trained to spot and act when they believe a child is on the autistic spectrum as well. But my concerns are that we are simply asking too much of teachers when they have so many children of all varieties to deal with.

The answer could be in smaller class sizes so each child can get individualised learning, or grouping children according to learning styles. In our school, dyslexic, dyspraxic, dyscalculic and Aspergic children learn alongside each other in small groups because their learning styles are more similar and the class sizes are small enough that where differences exist, they can be catered for. Eight children may need things explained eight different ways, but that’s feasible in such a small class. I question whether that’s possible in a class of thirty.

It should be possible in a junior school of children with three-class intake per year to be sensitively placed so that the teacher has a fighting chance of helping everyone. When my younger son was in mainstream, he was made to go into the remedial English group because he had problems writing, even though his reading was top of the whole year. He was angry, frustrated and sometimes had to be dragged to the lesson because he knew he was in the wrong group. Now in his specialist school, he is supported in his areas of difficulties while still doing work that is at the correct level for his intelligence. We had to move him into the independent sector to get this but this kind of teaching should be available to every child whether or not they have the parents who are willing and able to fight battles to get them what they need.

This report looks like a good marker for future practice if the recommendations are acted upon. We await other reports that are ongoing such as the Lamb Inquiry and the other autism bills that are going through parliament to see whether a real difference can be made and the future of another generation of children is not lost to the vagaries of government policy.

BBC report here: http://news.bbc.co.uk/1/hi/education/8109554.stm

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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.

Mother behind autism advert meets Brown – London Evening Standard

Mother behind autism advert meets Brown – London Evening Standard

A mother who wrote a message to Gordon Brown on billboards across the capital to highlight the plight of autism sufferers is to meet the Prime Minister today.

Polly Tommey, from Hampton, whose 13-year-old son Billy has the condition, said she would use their meeting to call for more support for thousands of people in Britain. Her autism charity estimates the Government could save £508million a year by giving jobs to people with the disorder.

She said: “I’m delighted and even thinking of voting Labour for the first time in my life after this. But what we now need are results.”

Mrs Tommey, 42, had made repeated attempts to reach Mr Brown and other ministers over the past few months but failed to get any response until now.  The mother-of-three had accused the Government of ignoring the “overwhelming stress and demands faced by families of those with autism”.

More than 500,000 people in Britain have the condition. She said: “Billy has a bleak future in our blinkered world. It is not fair that his potential is dismissed.

“Unless the problems of autism are understood and support is more widespread, we will see an underclass of desperate autism households.”

Mrs Tommey, a former actress who has worked as a body double for Charlotte Rampling, said she also asked to meet Tory leader David Cameron and Liberal Democrat leader Nick Clegg, but both said they did not have time. Her charity, the Autism Trust, was founded by Mrs Tommey after Billy was diagnosed aged two. Her £500,000 “Dear Gordon” campaign, at 76 sites across London in April, was funded by sponsors and advertising outlets.

Source: Sophie Goodchild, London Evening Standard,11.06.09

Long ago..when I was somebody

Long, long ago, before I was ‘Special Needs Mum’, I had a great career as a television journalist and news reader. I loved it – the job, the lifestyle, the image, everything. My last job was reading the bulletins that went out on NBC/CNBC Europe – I was famous in Sarajevo, for God’s sake! (UK, not so much!) I may have gone much further if I had stuck with it.

So what happened? Why would I give all that up? The answer, my friends, came in the form of two very demanding sons, born close together and from whom I could not be parted.

I read the other day in the Sunday Times magazine about Natasha Kaplinsky combining motherhood with her high-flying career and not getting much sleep, despite the inevitable nanny/helper. Her career was much more high-flying than my own when I had a baby, but I could have gone down that route, getting a nanny who would help take the strain while I continued gracing the TV screens of far-flung places in Europe and receiving sticky fan mail written in green ink.

My baby however, was not, in retrospect, what you’d call average. He could hold his head up almost from birth. He would lie there awake at the most unkind hour of the night, his blue eyes glinting in the reflected streetlight from outside our Clapham flat. He didn’t sleep through the night for eight months. When he cried, it was loud enough to wake the dead. He crawled early and walked at 9 1/2 months; he was always on the go. We thought he might actually be an alien.

He hated being bathed, dressed, put in his pushchair, changed, put down. He liked being fed and being entertained. As inexperienced parents we thought that perhaps this is what all babies were like. Early trips to the baby gym convinced us otherwise. There was nothing ordinary about him; he was super-bright and hyperactive and it was clear to my husband and I that we could not leave him in the care of anyone else. This meant I could not go back to work immediately.

By the time he was ten months old, I was expecting our second child so again, going back to work was unfeasible.

Our second son was born with a clicky hip, needing a splint and extra care. From the time he was six weeks old, our eldest would walk by him and smack him on the head. Every time. By now, our twenty month old could do jigsaws meant for five year olds and make complicated duplo models. We were convinced he was a genius!

When our youngest began to have Reflex Anoxic Seizures just after a year old (see www.stars.org.uk for help with this condition) it was clear again that a return to work was not on the cards. He could have up to three seizures in one day, usually triggered by his brother being mean to him.

I began to do voluntary work for the charity STARS, using my journalistic knowledge to help with their newsletters and press releases. This turned into helping them with a big heart rhythm campaign (see www.aaaw.org.uk) and then on to learning about how to update their web site.

Over the years this has developed into my own business at www.tirraoro.com. I work from home because now that both my boys have been diagnosed with Asperger Syndrome and we know how they need to be helped, I couldn’t leave them in after school care or regular holiday play schemes.

Too many years have passed now for me to go back to where I was in TV and I’m too old and have too many responsibilities to compete with the young, thrusting twenty-somethings who can work all the hours they’re asked to for not-too-great amounts of money. I’m not sure it would be as much fun either, as in the seat-of-the-pants days when I worked for the newly-created Meridian TV or with mad Croats and Australians in WTN’s foreign TV News Agency, although maybe that’s just the rose-tinted memory glasses.

I read with interest all the furious stay-at-home vs working mother debates and how one is better than the other or not, but for me, the debate is much more complicated than that. I do what web-sites, PR & design work I can from home for small businesses and charities; I’ve written two, as yet, unpublished novels; I’ve passed an OU course in Social Science and I’ve successfully researched and secured two statements of special needs for my sons. And then there’s this blog, designed to help and entertain others like me.

I feel guilty for not bringing in as much money as I could if I worked full-time and sometimes I feel a little regretful at leaving a career I loved, especially when I see people I know still doing it. But I take comfort from knowing that if I had left my children to go back to my career, it would have been almost impossible to spot that they had complex and underlying special needs, nor done as much as I have to get them the help they need. Life is stressful enough as it is; with a full-time job as well, I would have been booking my stay in The Priory.

I know there are mothers of children with SEN who do work full time and their children have not missed out, but personally, I would have found it very difficult to do both, at the level I wanted without a nanny, which I also didn’t want. Having a job like I had meant working shifts, long hours, being called in when a big news event broke and not being able to say no without it dentingyour career prospects. I loved my job so much I would have found it impossible to give as much to both it and to my children without something going pear-shaped. If someone reading this does both those things with autistic children and without considerable support, then hats off to you, I’d love to know how you do it so I can write about you with admiration!

But I’m sure I am not alone. How much talent is going to waste because mothers cannot return to the hours they used to do or find a job that will give them the flexibility they need to use their talents to the full? Maybe I should start a website for people like me who are good at what they do but can only work a few hours a day. If there is already one out there – let me know!

Many autism cases ‘undiagnosed’ – BBC News

A significant number of children with autism and related disorders could be undiagnosed, a study has suggested.  (Reports BBC News Online)

A Cambridge University team looked at existing diagnoses – and carried out recognised tests to assess other children. Of the 20,000 studied, 1% had an autistic spectrum disorder, 12 times higher than the rate 30 years ago. Autism experts said it was crucial to have accurate data on how many children were affected by the disorder.

The research, published in the British Journal of Psychiatry, was carried out in three parts. The scientists first looked at cases of autism and Asperger syndrome among 8,824 children on the Special Educational Needs registers in 79 schools in East Anglia. A total of 83 cases were reported, giving a prevalence of 94 in 10,000, or 1 in 106 children. The team then sent a diagnosis survey to parents of 11,700 children in the area. From 3,373 completed surveys, 41 cases of autism-spectrum conditions were reported, corresponding to prevalence of 1 in 101.  This 1% rate confirms estimates from previous research.

They then sent the Childhood Autism Screening Test (CAST) to the same parents to help identify any undiagnosed cases of autism-spectrum conditions. All those with high scores, plus some who had medium and low scores, were called in for further assessment. The team found an additional 11 children who met the criteria for an autism spectrum condition, but had not yet been diagnosed.

The researchers say that, if these findings were extrapolated to the wider population, for every three known cases of autism spectrum, there may be a further two cases that are undiagnosed.

Professor Baron-Cohen said: “In terms of providing services, if we want to be prepared for the maximum numbers that might come through, these undiagnosed cases might be significant. “It is important to conduct epidemiological studies of autism spectrum conditions so that the relevant services, including education, health and social services, can plan adequate provision for all those children and adults who may need support.”

Mark Lever, National Autistic Society chief executive, said: “This is important research, which for the first time gives us an estimate of the number of people who don’t have an autism diagnosis but may be in need of support.

“Getting the right support at the right time is vitally important and access to appropriate diagnostic services is crucial.”

He said the NAS was campaigning for statutory guidance for diagnosis included as part of the proposed Autism Bill to try and improve improvement in local authority and NHS services.

Source: BBC News

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

ASD child? Are you getting what you’re entitled to?

If you are the parent of a child with an Autistic Spectrum Disorder, you don’t need me to tell you how difficult a ‘normal’ lifestyle can be.

Not only will your child have some level of social and communication difficulties, they may well also need speech and language therapy or regular occupational therapy that unless you pay for privately, you face a long NHS wait (in the UK) or it may not be available at all. Going for days out maybe out of the question because of long queues or simply the stress of facing the world and other people maybe too much.

You may even need to get hold of specialist equipment such as writing slopes, special types of pen or even a laptop that would make your child’s life so much easier but it all costs money.

If your child has a disability that affects their life so that they need more help than an average child of their age, you may be able to claim Disability Living Allowance. It is made up of two components, The Care component and the Mobility component. You can call the DWP for a form, or you can now apply for it online. It’s a tricky form to fill out, because it’s not really set out for children with ASD, but there is advice on the NAS website on how to go about it.

If you are refused, you can call up and ask for a reconsideration of the case if you think what you have said has been misinterpreted, or, failing that, you can appeal. We get the middle rate of care and the lower mobility rate for both our Asperger’s sons, and it’s worth more than £250 a month each. This helps towards the costs of specialist education, which includes OT and SLT that we would otherwise find difficult to afford.

Legoland, thanks to their disability scheme

Legoland, thanks to their disability scheme

If your child has a Statement of Special Educational Needs they may be able to get a laptop or other IT equipment from the LEA. Ask your school to arrange an IT assessment. My younger son has an LEA laptop that he makes really good use of.

If your child qualifies for DLA and you are their main carer, and you don’t earn over £90 a week, you can claim Carer’s Allowance, which is worth around £53 a week. Not a lot, but if their condition prevents you from earning money through working, (eg, you can’t leave them with childminders after school or in holidays because of their condition)  then you also can’t claim job-seeker’s allowance, so every little helps.

If your child gets DLA, you are also eligible for a cinema card. This means that one person/carer accompanying your child to the cinema can get in free. It costs £5.50 and is valid for a year. You get a photocard with the child’s details so it doesn’t have to be the same person taking them each time.

Many children with ASD love going to theme parks, but cannot stand to queue which means that they rarely get to go. However, many theme parks have special passes or stamps which mean you can use the exit as an entrance, thus avoiding the queue altogether. We did this and got around Legoland’s rides so quickly, we were able to leave by 2pm having been on everything and with barely any stress. Other attractions also have reduced rates for the disabled or free entry for carers. Check their websites or call them up before you go.

The above are in addition to the usual child and work related tax credits which are availabe to anyone who qualifies. More information on what you may be able to claim can be found at the Disability Alliance website



Autism Costs UK economy £28 billion

A new study into the economic impact of autism spectrum disorders in the UK has shown that the total estimated cost is £28 billion each year. That averages out at £500 each year for every man, woman and child in the country.

The study, published in this month’s edition of the journal, Autism, includes estimates of the impact on the economy through lost productivity and says that further improvement in earlier intervention should considered and services across government and society in general should be better coordinated.

It combined data on prevalence, level of intellectual disability and place of residence with average annual costs of services and support, together with the opportunity costs of lost productivity. The costs of supporting children with ASDs were estimated to be £2.7 billion each year. For adults, these costs amount to £25 billion each year. The lifetime cost, after discounting, for someone with ASD and intellectual disability is estimated at approximately £1.23 million, and for someone with ASD without intellectual disability is approximately £0.80 million.

The research was carried out at King’s College London, Institute of Psychiatry, and the London School of Economics. Its authors found that, “At a time when the UK government is emphasising the need for higher rates of economic activity, and in particular is
trying to help people with disabilities and long-term conditions move into paid employment, the high costs of lost productivity stand out. Very few people with autism were in employment, which is hardly surprising given that there was little or no support to get them into work.”

The study points out that the figures only show what was spent or lost and not what ought to be spent. Autism advocates feel this figure should be much more, particularly in the area of early intervention and appropriate education. Such help can ameliorate the effects of the disability for many people with ASD, particularly those at the higher functioning end of the spectrum with Asperger’s Syndrome.

While the authors of this study emphasise that the costs presented do not provide an economic case for early intervention, they do highlight the importance of addressing that question. If early intervention could successfully change some aspects of behaviour that are cost-raising, both in childhood and subsequently, it may allow cost savings to be made and quality of life improvements to be achieved.

The research found that the range of sectors on which autism has an impact shows that there is  a need to ensure coordinated action across different parts of government and society more generally. It also said there was a need for a much better understanding of the cost and cost-effectiveness of various interventions and supports for children and adults to ensure that decision makers have a stronger evidence base when deciding how to allocate resources.

Study: Economic Cost of Autism: Martin Knapp, Renée Romeo and Jennifer Beecham, pub,  Autism http://aut.sagepub.com/cgi/content/abstract/13/3/317

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