SEN protection to age 25 – unless you go to university

I’ve been pondering on the SEN section of the Children & Families Bill for a while and I am perplexed by what seems to be an anomaly for some 18-25 year olds.

One of the aims of the extension up to 25 is so that young people can avoid a ‘cliff edge’ and they are supported through further education and training. If a young person with SEN is what is termed ‘NEET’ or ‘Not in Employment, Education or Training’, it is intended that they will be encouraged back into the system with a reinstated Education, Health and Care Plan.

Apprenticeships will be covered by the EHCP, as will further education. But not Higher Education at universities. I realise that most universities have pastoral care services, with lots of advice available, and a browse through several university websites reveals an impressive array of help to ensure equality of access and even counselling services.

sad studentBut what bothers me is that without an EHCP, it isn’t statutory. So, depending on which university you choose, you may or may not get the support at a level that would meet the same criteria or above as might be set out in an EHCP and the legal backing to make sure that this happens.

And if there is no mandated regular review, it will be much easier for a student to fall through the cracks. For example, a young person with Asperger’s, desperate to fit in, initially gets help and is thought to be doing well and there is little concern for his well-being. But in fact, they begin to struggle socially and then academically and then mentally. They may be away from home, or uncommunicative or not wanting to admit they aren’t coping. The student’s difficulties are not flagged up until things have deteriorated significantly because the university is not under any statutory duty to monitor regularly or ensure his needs are being met.

Of course, at a university with first-rate pastoral care, this may well be picked up. But if it isn’t, then what? All the work, support and progress that has been done with the young person while they were under 18 will be jeopordised.

Naturally, there are difficulties in bringing universities into the fold. They  have their own ways of doing things. There is the Disabled Student’s Grant and lots of advice for faculty staff such as this provided by the Physical Sciences Centre. A student may also be out of his home authority, which brings its own difficulties (not to mention vulnerabilities).

But this SEN reform process is about ‘blue-sky’ thinking. The busy beavers at the DfE have already managed to bring in a duty on health to provide when they initially said it wasn’t possible. They managed to include Independent Special Schools when it was thought it would be a difficult hill to climb and they deserve much praise for this.

I have seen that there are many bright young as well as more experienced brains in the DfE with tons of energy working on this reform – I bet if they were set the challenge of bringing in universities, they could do it.

Otherwise it just seems to me that if you’re a practical sort and opt to take on an apprenticeship, your SEN will have the legal protection and support of an EHCP. But if you’re a geeky, academic type who wants to go to uni, well, er, good luck with those special needs. Just make sure that the university you choose not only has the course you want but the pastoral support as well, because you’ll have no legal redress through a tribunal.

An article in the Guardian in 2010 highlighted the difficulties faced by students with disabilities. I believe that having universities covered by EHCPs could boost the number of disabled students finishing their studies and thus being better equipped to lead a productive and rewarding life and less likely to be unemployed.

Maybe my fears are unfounded – my boys are below university age but are in the GCSE stage, so it isn’t a million miles away. I would really like to hear about your experiences on this and whether you think universities should be included in the EHCP remit.

*Addition: This article in the Guardian underlines my point: If the EHCP covered universities, it may well be a different story for the students in this story

Raising awareness of children’s conditions so rare, they’re undiagnosed.

Tania writes:

Recently, when Debs & I went to Westminster, we met Renata Blower, a Mum who blogs about her life as the parent of a child with an undiagnosed rare disease.

RenataI was impressed by Renata immediately, as she has the tenacity, courage and drive to make a difference that I see in those who find themselves negotiating a very different parenting journey to the one that they originally envisaged.

Renata’s son, and to a lesser extent her other two children, have such a rare condition that it has no known diagnosis. She is working with SWAN UK (Syndrome Without A Name), a project of The Genetic Alliance UK to highlight today’s first ever Undiagnosed Children’s Awareness Day. Below is some of Renata’s story and if you’d like to read her blog in more detail, I will add the link at the end.

RareConnectTo coincide with Undiagnosed Children’s Awareness Day, a new community forum is being launched today on RareConnect, the very excellent platform hosted by EURORDIS and NORD Rare Diseases organisations that brings together people from around the world with specific uncommon conditions to share knowledge, support and experiences.

In this, their 40th Community (congrats!) RareConnect have partnered with SWAN UK, SWAN USA, and the Wilhelm Foundation to create a community especially for undiagnosed brain disorders. This community will be a place for caregivers of children with undiagnosed brain diseases a place to connect and share experiences across the five main European languages.

There are two types of Undiagnosed Brain Diseases. The first is ‘Stagnant’ where children are very sick from a very young age often at birth. They have severe congenital dysfunctions in the development of the brain. The other, ‘Progressive’ is where children are usually symptom-free at birth. Some of them have symptoms that are not related to a severe brain disease. At some point in their childhood, they start to exhibit different types of symptoms that worsen and often progress into a very complex neurological profile.

These Diseases are often fatal. To read stories of families affected by undiagnosed brain diseases, visit: https://www.rareconnect.org/en/community/undiagnosed-brain-diseases
For any parent who has no easy way to describe their child’s condition, never mind a proven pathway for treatment, finding others to share their frustrations and difficulties with is vitally important.
Here now, is an extract from Renata’s story.
****
On Saturday 13th April 2013 I will be celebrating Undiagnosed Children’s Awareness Day, probably at home, perhaps with an acquired bit of Easter chocolate, but undoubtedly with a huge sense of pride.

UCAD-widget-logo1I guess I don’t talk that much about Dominic (and of course Elliot and Lilia as we know they have a milder form) not having a diagnosis. I accepted a long time ago that finding an answer to why this had happened and what it meant we might face in the future might never happen.

Although the unknown is one of the hardest things an information junkie like me could possibly be asked to embrace, it is probably what has saved me. It is only when a new test is suggested that my compulsion to throw myself into hours of late night research starts again. Thankfully this doesn’t happen that often any more. I say thankfully because it’s exhausting, physically and emotionally, to be endlessly poised to find out whether your child is about to be handed a death sentence or a not, and geneticists aren’t doctors who are in a rush, so you can be driven mad by worry but then have to wait for a year for a follow-up appointment to find out the results of the tests. If the test results don’t go missing somewhere along the line that is.

Living in limbo with this level of anxiety about the unknown is disabling in itself, planning for a future you don’t know whether you’ll ever have leaves you scared to makes plans but racked with guilt if you don’t. At some point you have to make a decision to let it go but accept that it will lurk like a dark shadow over ever illness, every appointment, every form you fill in and every conversation about your child’s (unknown) future.

Tests to try and diagnose Dominic are few and far between now quite simply because we’ve done them all. The conclusion, if you look at the results printed in his notes, is that Dominic is normal. Ahh, I love that word as it holds so much importance and yet is so often meaningless. Dominic’s version of normal, the ‘there is nothing wrong’ test results, are in conflict with the five volumes of Great Ormond Street Hospital notes and the child that is tube fed, having growth, blood sugar and thyroid problems (linked to a small pituitary), unable to stand or walk, hypermobile and tires incredibly quickly (for a full list have a look here).

In fact the only test that has shown any issue is an EMG (electromyography) which tests the muscles and nerves to see if they are working properly. We found that his muscles were normal and his nerves were normal, however they did eventually discover that the communication between nerve and muscle (at the neuromuscular junction) wasn’t working as it should (after disbelief lead them to repeat the test 5 times). Of course all the testing for the conditions that are known to affect the neuromuscular junction came back… you guessed it…normal, and a muscle biopsy (his second) came back… yup… normal again! At this point most medical professionals shrug, or scratch their heads before giving up trying to figure it out… so feel free to follow suit.

This has been going on for 6 and a half years. If I was still on tenterhooks for a diagnosis after all this time I would be sat in the corner twitching… well far more than I am currently. Our only hope for a diagnosis is the Diagnosing Developmental Disorders study, which is trying to create an online catalogue of genetic changes and what problems they cause for children. So the answer we get might get would be little more than a string of numbers and letters locating where the genetic code has hiccupped. Even so it would answer the question ‘why’ Dominic has the difficulties he does, even if it can’t tell us much more about what to plan for in the future– at the moment.

I say at the moment, because science never stands still and advances in genetics happen almost weekly it seems. I find it hugely exciting to be part of something that I truly believe will change the way complex children are diagnosed and something that will help us begin to understand the code that makes us who we are.

You can read this post from Renata in its entirety, and please do, at this link  

Below are some more links you might like (of course you will!)

Renata Blower on Twitter  | Just Bring The Chocolate on Facebook | SWAN UK on Twitter | Swan UK on FaceBook

You can find out about the other 39 RareConnect Communities hereRareConnect on FaceBook | RareConnect on Twitter

Read more posts from parents of Undiagnosed Children at Renata’s Blog Link Up

Highlighting your SEN Beacons of Good Practice

Debs writes….

beaconWhen we visited Mr T last week, along with other mum bloggers, we discussed the excellent help that several of us had experienced (as well as those aspects of the system which had failed us).  We then talked about  how this information could be developed into “Beacons of Good Practice” that the Government could highlight as examples to other areas who may not be doing so well.

Who you would nominate in your area?  I am lucky because I would be able to point out a few “Beacons” with ease.

The first one that springs to mind is our “VI pre-school worker”, an equivalent of Portage for VI children in Kent.  When your child is born with a disability or SEN, you often don’t know quite what to do for the best, where to go for advice or information, what to expect for your child with educational provision or even their mobility and independence.  As J was born with a specific diagnosis, we didn’t have to look for the help we would need, it just arrived – in the form of Peggy, our VI pre-school worker.  Our Specialist Teaching Service in Kent offers a service specific to children with VI and when they are notified of such a child, they make the contact with the family so the family doesn’t have to start looking for them.  How much easier this made our life.

Peggy was our pre-school worker or as we liked to call her “the lady who brings the fun” and she made it all so much easier for us.  She also allowed us to “enjoy” our son.  So often, fighting to find the help you need makes your child a burden and you become his carer, secretary and advocate.  Having Peggy took a lot of that away and we got to enjoy J’s early years immensely

I can still remember the issue of encouraging J to walk.  With most young children, you hold out your arms and give them big smiles and even demonstrate what you want; obviously with J this wasn’t an option.  However, I also remember not worrying about this because I knew I could ask Peggy.  She was great, she had loads of ideas, lots of suggestions and more importantly, was able to advise that it would take patience from all of us. We worked tirelessly for months and then J rewarded us by taking his first steps independently towards Peggy during one of her visits; I can still remember how loudly we all cheered and how pleased he was with himself.  Peggy shared with us that this was a first for her – to see one of the children she supported take their first steps – and I know that this is recorded on her visit report in his file, so it made me feel like we had given something back to her in return.

jamieOne of the most rewarding things was that Peggy always involved J’s twin sister when she visited.  When we were trying to work on J’s touch and sensitivity, Peggy kindly brought along warm spaghetti, rice pudding and jelly for J to play with.  We sat there with the nice separate pots but J was not interested so Peggy suggested that R play with them – at which point my beautiful daughter promptly mixed them all together and then threw them in the air.  Our faces were a picture.  The “sketti mess”, as it became known, landed on J’s head and slid down his face.  We watched in horror, waiting for the scream but instead we got the deepest, most infectious belly-laugh ever.  J then proceeded to help his sister throw the “sketti mess” around the room whilst shouting out “sketti mess” (and we did not have laminate flooring or a leather sofa) but his fear of touch was addressed!  Making R part of the visit and activity was just one of Peggy’s talents, she totally understood that J was a part of our family and we all needed to be involved with him and his development for it to work well.

Peggy was not just our VI pre-school worker, she was also our key worker – even though that was not her specific job title.  She knew the world of VI inside out and happily shared the information with us.  What really helped was that she gave us the information when we needed it.  We were not inundated with leaflets, books and advice enmasse (which is often the case), we were provided with the relevant information at the relevant time.  Every family is different and some of us like to think ahead and some like to live in the moment so, having a key worker (or a practitioner who knows the benefits of key working) ensures that the family gets the most appropriate person-centred service.

Our Specialist Teaching Service – VI provided exactly what a family in our position needed.  We had support, advice, and information  available, when we needed it.  It provided us with someone who helped us when it came to nursery and someone who knew the local schools and actively played a role in J’s transition.  The success of this Good Practice is easy to see – spend an hour with J and meet this confident, outgoing little boy who is keeping up (and sometimes ahead) of his sighted peers.  He is a bit cheeky and a tad outspoken – but then again, he is my son and I wouldn’t have him any other way.  If you read my post about J’s diagnosis, you will see how much life has changed for us since we first heard the news.  Without the Specialist Teaching Service – VI, I doubt we would be in the same place as we are now.

So who would be on your list of Good Practice?  In Kent PEPs, we recently launched Good Practice Awards so parents could tell us when they were happy with a service, maybe you have something similar in your area?

Over the next month or so, we will share with you our other Beacons of Good Practice but we want to hear from you – what works well in your area?  What service made a difference?

Special Needs Jungle has a new LinkedIn group!

LIgroupWe have exciting news!

Special Needs Jungle now has a brand new group on LinkedIn. While there are a couple of other SEN groups there, the Special Needs Jungle group is aimed at anyone on LinkedIn involved with 0-25yrs special needs and disability issues in the UK.

This includes health, education, mental health, social care, childhood illness/rare disease & its implications among other issues. And you are welcome whether you are a practitioner , parent/carer or another individual or professional with an involvement in these areas.

We aim to offer a chance to learn from each other by sharing knowledge, experiences, news, best practice and views you may not have previously considered!

There is so much knowledge available from many different sources and we’d like to offer a place for you to contribute your ideas, views, resources and knowledge.

With so many changes on the way in the wider area of special needs, it makes sense for knowledge to be disseminated and shared as widely as possible.

The group is managed by myself and Debs, so you’re sure to have a warm welcome. We’ll be on the look out for great contributions for the SNJ site as well, so don’t be shy in your suggestions!

Join, share, contribute, make yourselves at home!

If you are a LinkedIn user, you can ask to join here

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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The Special Needs Jungle Story Selection

The Special Needs Jungle weekly news review is back! It was supposed to be away for just a week while I was in Sweden but last Friday I was just too tired to even think about it. The conference was fantastic – so good to connect so many people from across Europe who are all affected by limb deficiency and who are all trying to improve the lives of other people with similar conditions.
This past week, I’ve been working hard on our Family Voice Surrey response to the Education Select Committee’s call for responses to the draft SEN bill. Having seen a number of other responses, there is a wide range of opinion for the committee to consider and I hope it takes note of everything.
This week’s stories that I’ve found include an array of great blog articles – if I’ve missed yours, just leave it in the comments.

One of the comments we hear a lot at Netbuddy is ‘Why does everything for people with special needs cost so much?’ Everything from toys to adaptations – it all seems to come with a hefty price tag. In these strap-cashed days, it’s even more galling for parents to have to fork out more.

Today is the deadline for the Education Select Committee’s call  for responses to the draft SEN bill.

Following the evidence of home educators in September, the Committee will hear the views of local authorities and from the newly-appointed Parliamentary Under Secretary at the Department of Education, Elizabeth Truss MP, who has taken over the home education brief.

Today I’m feeling a little sad. Son2 is off school again with joint pains in his legs. We’ve just been for a blood test and he is awaiting an appointment later this month with a specialist in London

Emma’s story of Fetal anti-convulsant Syndrome

“Why do you bother speaking out/attending meetings/creating surveys (delete as appropriate), nothing ever changes”. I hear this all the time, not from practitioners but from other parents.  Some parents know me well enough to know I am not the type of person who can just accept things and some know that I am in my element when facing a challenge.

I am grateful for ..I was very excited to see this prompt because I like being able to sit and think about the good points on life.  It is very easy to see the negatives in things, especially when you have incidents occur like we did this week.  It is easy to let frustration drain you.  To make you question your faith in fairness.

Today I attended the “Managing Difficult situations” training workshop provided free for Parent Forums via Contact a Family.

A few days ago I fell asleep on the landing. I was waiting for my son to go to sleep.  He is not 1, he is 11, but he tells me that he is too afraid to go to sleep on his own.  That’s Asperger’s for you.

In the largest study yet examining proposed changes to the autism diagnosis, researchers say far fewer people would be cut from the spectrum than previous studies have suggested.

 

SNJ on MumsNet – The Paralympic legacy debate

So, here I am, back from Sweden after what was an amazing meeting for people with limb disabilities from 12 different countries. It’s not easy to travel with a disability and especially with a wheelchair but this did not deter them from making their way to Malmo to take part. It was fantastic to get together so many people from far apart who face so many similar challenges. It was possible for them to discuss their own experiences and how they can work together to bring a strong, positive voice for the needs of the limb difference community

Just before I went, I was asked by MumsNet to submit a debate piece about the legacy of the Paralympics against the Equalities Minister, Maria Miller. This I was delighted to do and, this afternoon, it is published here http://www.mumsnet.com/bloggers/paralympics-legacy-debate.

Ms Miller’s piece is about the positive influence the games have had, whereas mine is a little darker. The games were great – inspirational, a great spectacle – but their legacy?

Well, you can read both points of view here and then click the debate link at the bottom to have your say.

 

The draft SEN reform bill – some reactions

One to watch. And we are, oh yes we are.

So fare thee well, Miss Teather, just as the draft bill is published, you get the boot from your job. Hardly seems fair, really, when you’ve done so much of the legwork and now Mr Laws gets to step in to steer the ship home. This is Mr Laws, a man with a vast amount of experience with special needs children (actually, I have no idea – I’m just guessing they wouldn’t put another person who hasn’t had any actual children, let alone any with special needs, in charge of SEN reform. Sorry, what did you say? Oh. Well. They did. *shakes head ruefully*) I’ve seen him described as ‘formidable’. What, compared to parents of SEN/D kids? Don’t fancy his chances much, do you? *UPDATE NOTE: Neither did the government, because roles have since been shuffled and Edward Timpson MP will be in charge of the SEN bill, see this post for more**

Now, I’m not saying in order to do a good job steering any kind of reform you have to have had personal experience of whatever it is you’re reforming, but when you’re talking about something as sensitive as vulnerable children with disabilities and their families, if you have no direct experience, you can only ever sympathise rather than empathise, which is quite, quite different. See, we don’t want your pity, we want you to feel our pain. Just a little bit, because, trust me – you won’t forget it.

Same goes, I am quite sure, for adults with disabiltites who’d quite like the government to stop picking on them and cutting off their only viable means of financial support or taking away their Motability allowances, without which they couldn’t even get to any job that would have them. Oi, you lot in the wheelchairs, why can’t you propel yourselves around the Paralympic stadium as fast as David Weir? You wouldn’t need Motability allowance then, would you?

As someone whose day job is for an international disability organisation, as well as having children with special needs, I really find the whole disability-bashing climate extremely offensive, disturbing and quite frightening particularly when it seems to have been started by our own government, unwittingly or not. I’m also not entirely sure the Paralympics has done a lot for the image of people with impairments who aren’t quite as nimble as Oscar Pistorius. It just seems to have made certain sections of the public think, well if they can do it – why can’t you? (Answer: because they’re elite athletes, you muppets.)

But anyway, now I’ve made that clear, onto the draft bill. I promised my thoughts, but, again because of said job, I must apologise for I have let you down. I am currently preparing a two-hour social media workshop to help patient groups with limb differences make their voices heard online,  and so normal SNJ service isn’t quite up to snuff. But, kind readers, I have managed to seek out the opinions of those who haven’t been quite as distracted and I present them for you in a mini round up, here.

The very excellent Jane McConnell of IPSEA said,

“Now is the time to consider the system of support these draft provision are looking to create and assess whether they will improve and enhance those that are already in place for children, young people and their families across education, social care and health. It is time to be clear and transparent about what can and cannot be expected to be provided by any system. This needs to be a system that works for all children and young people – not just those that have parents to “police” and enforce it. We look forward to working closely with the Government to make the most of this opportunity.”

NASEN’s Lorraine Peterson meanwhile said,

“We need to ensure that all the work that is currently taking place especially within the Pathfinders and the voluntary and community sector is not wasted and will support the final legislation as it passes through Parliament. We have a real opportunity to make sure that this legislation secures a better future for all children and young people.”

I quite agree with this – there is a lot of work being done by many people at the grass roots level, not to mention much money being spent on it. It is to be hoped that (and this will be a mammoth task in itself) when all the pathfinders present all their results, that only the best ideas that work for children will make it into the final bill.

The NAS said,

“The draft legislation sets out provisions for statements to be replaced by Education, Health and Care Plans (EHCP), which will extend statutory protections for children with SEN up to the age of 25 for those in further education.We believe that this will help improve transition for young people with autism. However, we are also working on the draft social care legislation to help improve transition into non-educational support.”

They highlighted various points from the bill some of which are below:

  • Legal definition of special educational needs remains the same [My note: Not sure how this could be changed, anyway]
  • Local authorities and clinical commissioning groups must make arrangements for jointly commissioning services for children with SEN in their area [My note: Well, from what I’ve seen so far within the pathfinders – good luck with this, there is a LONG LONG way to go]
  • Local authorities must produce their ‘local offer’ of available education, health and care services
  • Education, Health and Care Plans (0 – 25) replace statements of SEN [My note: It is quite likely however that there will need to be several versions of an EHCP format, depending on the child/young person’s age
  • All of the provisions of the Bill will apply to all schools including Academies and Free Schools [My note: And quite right too]
  • Local authorities must prepare personal budget in relation to an EHC plan where a request has been made by the parent or young person [My note: But no parents will be compelled to have one for their child]
  • Compulsory requirement for a parent or young person to participate in mediation before they can appeal to the Tribunal [My note: This can only benefit a parent who will then get a right to point out parts of their child’s application that may have been conveniently overlooked or just plain ignored – however, many parents, if not all would most likely want or need a representative and/or their key worker to help them prepare and attend with them.
  • There will be a revised Code of Practice [My note: Well, duh, not just a revised CoP but a completely rewritten one, from start to finish. And who’s going to do that? And when? Before the bill goes through parliament? At the same time? After?]

And this sparks another thought: Not only will there need to be a new Code of Practice, but every local authority will have to rewrite its graduated response documents and all its other SEN literature. There will, naturally, be a cost associated with this, and it will also take time – they can’t write it before they know what the new laws are. Then there is the cost of retraining all those LA staff who think parents are money-grubbing, sharp-elbowed harpies who are trying to bleed them dry.

I’m hoping to bring some parents’ views of the draft soon. if you’d like yours included, please do send them to me.

In my few months working with the LAs and colleagues on the pathfinders so far, I have to say I have met some incredibly dedicated, knowledgeable and caring people. A few are just plain wonderful. It’s going to take time for the rest to be whipped into shape and, as I said in my last post, they’re not exactly making an early start on changing attitudes at the lower levels.

But you know what? I’m optimistic. You have to be, in such a root and branch overhaul like this. While you cannot ignore the many areas of concern, without putting forward a positive attitude and a will to work for change, it cannot succeed. Let’s just hope that those people working so hard for it don’t drop from the pressure of tight timescales and overwork before then.

And Mr Laws? I’ll extend the same invitation to you as I did to Miss Teather – we’re having a pathfinder event in November, a joint parent and LA organised one in Surrey. Do come. You have, I am sure, a lot to catch up on and this will be a great place to do it.

Advice for SENCos – the parents’ perspective from Hayley Goleniowski

This post originally appeared on the DownSideUp blog of  Hayley Goleniowski, who writes about life with her beautiful daughter, natty, who has Down’s Syndrome. I thought it was such a great article, I asked her if she wouldn’t mind me re-posting it on Special Needs Jungle. Hayley was recently invited to address a group of SENCos as the neared the end of their three year Masters’ degree course. Their tutor hoped Hayley’s experience could provide the missing ingredient to the course – that of the parents’ perspective.

***

Natty at her all-inclusive pre-shook

Qualified with nothing more than being a former teaching assistant, teacher and the blogging parent of a child with additional needs, I put my thinking cap on and set to work to come  up with something that would change the way SENCOs think forever.

 I decided to ask other parents and disability groups what they would say to a room full of SENCOs if they had the opportunity. I did this via Twitter and Facebook, and the response was overwhelming. I printed the replies off, cut them up and spread them on the kitchen table. Interestingly they fell into 3 distinct categories, and echoed my own initial plans for the talk.  I weave the quotes from these parents into what follows.  Thank you to all of you that helped.

Active listening: a core skill for SEN reform

Yesterday, MumsNet hosted a live web chat with Sarah Teather, Minister of State for Children and Families.

I recently posted an open letter to Miss Teather, to which I’m still awaiting a response. Last week I spoke at a Surrey pathfinder event on behalf of Family Voice Surrey and in front of DfE senior official, Stephen Kingdom. I made sure to mention our concerns about the timetable for reform that everyone, outside the government, is very worried about. I spoke to Mr Kingdom, a very personable chap, afterwards, to ask him to pass on these concerns to Miss Teather. A day later, he emailed me to tell me about the MumsNet webchat and I was delighted to publicise it on my various social nets (and thanks to everyone who retweeted!) so that as many people as possible could get their questions in. Including, of course, me!

Here is my question:

Hi. My name is Tania Tirraoro and I am co-chair of Family Voice Surrey parent-carer forum. On behalf of FVS, I sit on both the Surrey Local Change Board and the EHCP workstream, part of the SE pathfinder. I have two statemented teenage sons with ASD and I am also the founder of the website, Special Needs Jungle.
I can see how hard parents and professionals alike are working on this reform and how much many LA staff want to do things differently. There are many challenges and details to be worked out and worked through. Our EHCP trial isn’t even set to start until September, and we are far from alone.
I would like to ask: What is your objection to listening to (as opposed to hearing) all those expert voices who are telling you that any draft bill should be delayed until the New Year?A delay of a few months won’t stop this process (described by someone in your department as an ‘unstoppable train’, rather worryingly), but it will give those involved time to work through the pilots, making adjustments as they go without feeling the unnecessary pressure of looming legislation.
The genie is out of the bottle – reform will happen, but you’ll be remembered much more favourably if you give them time to do their work without the extra pressure that fitting into an artificial timetable will bring and you will end up with a stronger, more sustainable system that will really work for children with SEN & disabilities and their families.
Stephen Kingdom, your DfE colleague, told me last week the process will evolve and it won’t be a final bill – if that’s so, why bother publishing it until you actually have solid results to use?
Thank you for your time.

Despite being in bed recovering from surgery, on Monday I logged on via my iPad to read all the many questions posted – and there were lots of questions from concerned parents about various aspects of SEN provision.

It has been clear to me for some time that anyone outside the actual pathfinders doesn’t really know what stage they’re at, or what they’re even about. If you’d like to know more, I would thoroughly recommend this article in SEN Magazine from Jane McConnell, CEO of IPSEA who has a good grasp of the issues and spoke at the recent Education Select Committee on SEN.

Even though it wasn’t the first to be posted, my question was the first Miss Teather chose to answer, not that there is anything to read into that. See below.

SarahTeatherMP Mon 16-Jul-12 10:37:55

Tania Tirraoro asked a question which was picked up by a few of you:
I would like to ask: What is your objection to listening to (as opposed to hearing) all those expert voices who are telling you that any draft bill should be delayed until the New Year?

The most important thing I should stress is that what we will be publishing in September is just a draft bill – it is for discussion, not for debate in Parliament. We won’t be publishing the real bill until the Spring next year. The draft bill is an opportunity for parents and charities who are expert in this area to look at our ideas and tell us what they think. The education select committee in Parliament will also run a kind of inquiry on the draft proposals. It is one of the many stages we are using to test out people’s views and make sure we have the detail right.
It is also important to remember that this is the half way point in the reform process. We began in September 2010, asking people’s views on about what should change, then we published a green paper in the spring last year, more detailed proposals a few months ago, the draft bill in September and the real bill next year. We will also have lots of time in Parliament to debate the bill. It isn’t being rushed through. It will run over two Parliamentary sessions. And some of the legislation will need to be done in what is called secondary legislation at a later stage.
Throughout this process the pathfinders will be testing things out and we wil be getting formal reports. The pathfinders of course are not just testing out the proposals for the legislation. much more importantly, they are about changing culture. You can’t legislate to make people listen – you need to get better at it.

Sarah

I didn’t post a follow up, she only had an hour and there were a lot of questions to get through. The answer was interesting and informative but it still doesn’t answer the question posed further down in my posting – why publish a draft bill if the process is nowhere near ready for it and there is still feedback to be sought from parents and charities? This would seem to be a waste of time and money.

It is this draft bill that is putting unneccesary pressure on the professionals involved in the pathfinders who are trying to do their best – it is unfair and unrealistic. At this stage, in Surrey, we are only about to start talking about who a key worker should be and what qualities they need. But key workers need to be appointed before a trial can begin. Likewise a plan writer. This work WILL be done, but why place what amounts to a false deadline to loom over their heads?

Speaking as the parent of children with special needs (and I’m pretty certain that my views are echoed by most other parents and professionals), give them time to get it right! Why not say, okay, we will have a draft bill, but to instil confidence in the government’s intentions to get it right, we will listen to these concerns and make a much more informed draft bill in January. Would that be so difficult? Really? We wouldn’t think badly of you, we would all breathe a sigh of relief that the job could be done without a guillotine hanging over the heads of those doing the work.

The perception that without this October draft bill nothing will happen is utterly wrong. All it’s doing is causing anxiety and the impression that the government is steaming ahead without regard for the reality of the situation.

One very interesting point Miss Teather mentioned – and it’s something that is at the very heart of the reform – is culture change. This also is going to take money and time. People may lose their jobs over it if they can’t adjust to a new way of thinking. The idea of children and families as ‘client groups’ as I heard one person call them, must come to an end. Children are not clients, they are the vulnerable young people that this process is all about. You can’t change culture by a wave of the wand – extensive training needs to happen.

On top of this is the massive shake-up  in school funding that is happening all at the same time and it is causing much anxiety, frustration and confusion. Mr Gove seems to forget that with all his ‘fantastic’ ideas, he is creating uncertainty in already uncertain times and this cannot be good for schools, teachers or ultimately, children.

So, thank you Miss Teather, for taking part in the web chat yesterday. I’m not really sure if anything you said made anyone actually feel better, but it was a nice gesture. I know you’re busy, but you need to do more getting out and about like this. You see, parents of children with special needs are a cynical bunch and for good reason. Actions speak louder than words to us.

Can you really understand what we’ve been through and are still going through? I don’t really think so, but delaying any draft bill to the new year would be a good indication that you are listening to those of us who are in a position to speak on behalf of our fellow parents who are too stressed and overwhelmed with their situation to have time to speak up for themselves.

 

Jessica Cox: Celebrating Determination

Hope you’re all enjoying the Jubilee holiday.

This blog often talks about the challenges faced by our SEN & disabled children and the struggles by parents to get them the help they deserve. Today, I’d like to share a video with you from a truly amazing young lady who has overcome a significant physical disability to lead a successful life.

Jessica Cox was born with no arms at all. Her mother was, naturally, devastated and worried for her daughter’s future. Jessica had to face stares, ignorant comments and lack of self-confidence as well as the purely physical challenges of how to live and learn.

Jessica decided she would do her best not to let her disability prevent her from doing anything she wanted. She taught herself to drive and even fly a plane with her feet. Today she is a motivational speaker who uses her experiences to help others.

Launching DysNet – and how the right education helped one man make a difference, despite disability

For the past two months, in addition to my special needs work, I’ve been working on an exciting project to launch an online community network for people living with limb differences.

DysNet is the brainchild of a dear friend of mine, Geoff Adams-Spink, about whom I’ve written on this blog before. It’s aimed at bringing together people around the world affected by dysmelia (congenital limb differences) to share information, knowledge and resources. Today, Geoff writes about his life for Special Needs Jungle and demonstrates that, with the right support and education, it is entirely possible to live a rich, rewarding and independent life.

From Small Beginnings

First let me declare an interest: Tania Tirraoro the award-finalist writer who hosts this blog is a good friend and a professional contact.  She and I trained together as journalists on the South Cornish coast way back in 1988.  Back then, Tania was vivacious, tenacious and keen to get on.  More than two decades later, absolutely nothing has changed.  Or has it?

Bringing up two boys with Asperger’s has directed her considerable energies into the field of special needs education.  As someone who spent most of his childhood at special boarding schools, she has asked me to share a few thoughts about my experiences and about the current debate about special schools vs. inclusive education.

Geoff Adams-Spink

I was born half a century ago with disabilities caused by the morning sickness drug, thalidomide.  The drug left me with extremely short arms, flipper-like hands and very limited vision in the one eye that I have – the other is completely absent.

Back then, children with physical disabilities were destined for special schools – mainstream either wasn’t geared up or wasn’t prepared to gear up to support us.  My parents were told in no uncertain terms that my safety couldn’t be guaranteed if I attended the same local schools that had served my two sisters and my brother perfectly well.

So, aged five, I was packed off to Penhurst school in Oxfordshire which was run by NCH – now NCH, Action for Children.  I recently revisited the place and found it transformed.  It no longer supports children with the sort of disabilities I have.  All of the students have profound and multiple learning disabilities or PMLD.  The 26 children require intensive support from the 150 or so staff.  The cost of a place there can only be guessed at.

And this has set me thinking about the current debate about special needs vs. inclusive education.  It seems to me entirely ridiculous that anyone should assume that one approach should be adopted exclusively.  If we are, in the words of a former Secretary of State for Education to “respond to the needs of the child” there is surely room for a mixed economy.  Plenty of children – myself included – would probably manage perfectly well in mainstream education with a few minor adjustments.  Others would be left in the margins and need the specialist support of staff who know how to encourage children with different needs to achieve their potential.

This is not simply about physical compared with learning disabilities: two children with, superficially, the same level of impairment could well require different responses from the system.  My nephew, for example, has Asperger’s and managed quite well in mainstream education.  But he has the benefit of supportive parents who have equipped him with the knowledge to know how to regulate his behaviour and manage his condition.  He’s also a big strapping lad who has no shortage of confidence.  Another child with the same level of Asperger’s may well struggle in the same environment.

Is there life after special education?  You bet!  I out-grew Penhurst quite quickly and was sent to another boarding school aged eight.  This establishment had an approach that – at the time – was quite revolutionary: that disabled children (the majority were vision impaired though some had physical disabilities as well) should be encouraged to acquire certificated qualifications.  I left the place after nine years with eight O-Levels and went on to study for A-Levels at an FE college and then on to university.

So how have mine and Tania Tirraoro’s paths crossed again?  Tania is now an expert in the use of social media.  After 22 years working as a BBC journalist, I am now Chairman of a European organisation that represents people with limb difference.  We have an ambitious project to create a global network of those affected by dysmelia (as limb difference is officially known) and to link this network with a knowledge base and another network of dysmelia experts.  Spreading the word using social media is a no-brainer.  And our choice of Tania to establish our social media networks to help us achieve our goal was equally simple.

On Monday May 21, Tania is helping us to launch DysNet – an online community that will help people to conduct conversations in five languages. We’ll have a knowledge-sharing website and a secure community forum on RareConnect, run by EURORDIS & NORD, the world’s leading rare disease organisations.

I wonder whether, when my distraught mother left me at Penhurst for the first time, she had any idea that her son would get so much from his special education.

DysNet Website  | DysNet Twitter | DysNet Facebook | DysNet G+

Act now for a chance to learn more about SEN – for just £36 including lunch!

There are just four days left to secure the early bird price for this year’s Towards a Positive Future SEN conference in Newbury.

The conference takes place on June 16th and I’m honoured to be one of the keynote speakers,. NAS president Jane Asher will be leading a Q & A session and other speakers include special needs, legal, education and disability experts.

The conference is for anyone who lives or works with children and young people with SEN and disabilities. It’s a great opportunity to learn more about how to help your child or children you care for and to speak to other parents and experts.

There will be separate seminars dealing with dyslexia, autism and the implications of the green paper. See the full programme details here.

Early bird tickets are just £36 for parents – which considering most conferences are into the hundreds is an incredible deal. Early bird professional tickets are £72.

Book now to avoid disappointment. The event is at the Arlington Arts Centre in Newbury and parking is free. Lunch and refreshments are included.

The conference is sponsored by, among others, SEN Magazine and Pearson Assessment.

The conference organiser, Janet O’Keefe, said, “This conference will focus on what we know works and how this can continue to work whatever the future political or legal system we find ourselves under in the coming months and years. Our aim is that parents of children with special educational needs and the professionals that support them are as informed as possible about the Green Paper, forthcoming changes and future implications on health, education and social care funding so that they can navigate the system successfully.”

For online booking, click here

Real tips from real carers – a new tool from NetBuddy and NHS Carers Direct

Netbuddy has been working with NHS Carers Direct to pass on practical advice, tips and ideas from carers of people with learning disabilities to other carers.

‘Real tips from real carers is a new tool created by NHS Carers Direct and Netbuddy. It offers a selection of tips submitted by carers under four separate headings – Communication, Healthcare, Personal Hygiene, Behaviour and Routine.

The tool is live on the Carers Direct website and a version of the tool is also available for people to put on their own websites.

Netbuddy director, Deborah Gundle said: “We are so pleased to be working with Carers Direct to share these great practical ideas from people with everyday experience of caring for people with learning disabilities. Working in partnership with other organisations like Carers Direct allows us to reach more carers who can benefit from Netbuddy. We really hope more people will come forward and ask for the ‘Real tips from real carers’ widget on their website.”

Carers Direct website editor, Rob Finch, said: “The best advice comes from experience. Netbuddy is an amazing way for carers to get the benefit of the experience of others in similar situations.
“The tool that Netbuddy and Carers Direct has created is a really simple interactive gizmo that could help share dozens of these great tips with a wider audience of carers. We hope that these tips will make real changes the lives of carers – and the lives of those they support.”
You can find top tips for helping children with SEN and disabilities at the NetBuddy website. You can also offer your own tips as well!