SEN Green Paper response round up and other special needs stories

It’s been something of an eventful week for both Special Needs and Special Needs Jungle. Last week, I was called up by a reporter from the Daily Telegraph to ask my views on whether I thought one in five schoolchildren really had special needs. We had a good chat and the article appeared on Saturday. It was followed by a barrage of comments online on the DT, often displaying the most moronic and ignorant views– not aimed at me, but at vulnerable children.  As the paper didn’t really reflect the crux of what I had said, I wrote a blog post the same day that attracted much more thoughtful comments (thank goodness) from people who actually have opinions worth reading.

Then, the detailed response to the SEN Green Paper came. I was called up by Christine Alsford from Meridian TV, my ITV region and they came over and spoke to me about it, even filming Son2 in his bright blue BodySox.  (See post below with the footage).

On Wednesday, I went to an EHCP meeting for the Surrey pathfinder where, after the government announcement the previous day, there was understandably something of a sense of urgency and alarm at the accelerated deadline. The new lead, Susie Campbell, however, appears more than up to the task. Actually, I think she’s fab.

And so, understandably, this week’s stories are mostly about the Next Steps document and the response to it – all worth reading to see different perspectives.

And if you missed my guest post about Floortime for autism – there’s a free parent ticket and a cut price professional ticket for a June workshop on offer – check out the post below.

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?

A Good Image for Asperger Syndrome

Cover for This Last Summer

I’m about to blow my own trumpet, so look away now if  you’re not into hearing people’s good news…

I’ve just published my novel, This Last Summer, on Amazon Kindle and it will also be available in print in a few months. I’m writing about it here because the book features a character with Asperger Syndrome. Ben Chambers isn’t the main character – that’s his TV reporter sister, Maddie, but my aim was to portray a high-functioning character with AS to show that it is perfectly possible for people with AS to live fulfilling lives, despite their difficulties.

Ben is a young man just completing his Phd, still living at home, but often underestimated, even by his own family. Sure, he has difficulties in tough situations – but he has a good support system and this makes all the difference to him.

I hope I’ve done a good job with Ben – if you get a chance to buy the download on either Kindle at Amazon UK, Kindle at Amazon US and Smashwords in all sorts of formats. It’ll also soon be available on ibook and at Barnes and Noble in the US.

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!

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