Gently changing perceptions: DownSideUp, a blog we love

Tania writes:

I wanted to share a blog post with you I’ve just read from Hayley at DownsideUp

Hayley’s blog, about her journey with daughter, Natty, who has Down’s Syndrome, gets stronger all the time and this post is one that highlights the importance of what blogging can achieve: an increase in understanding and awareness without it being shoved down your throat.

Hayley writes with warmth, humour and compassion but as ex-Cllr Brewer discovered, she’s not someone you would want to tick off either.

I’ve been reading a lot of posts lately for the Mumsnet #ThisIsMyChild campaign and you can find my round-up on here Mumsnet.

There are quite a few SEN bloggers these days and it was a pleasure to discover some new ones. For me however, the cream of the crop is Downsideup, (though I am very partial to a bit of Just Bring The Chocolate when she’s around too…:))

So here is an excerpt from Hayley’s post:

MUSICAL and LOVING aren’t they?

Well, I guess I can dispel myth and challenge stereotype just as efficiently through family tales and amusing anecdote, so let’s take a light-hearted look at one of the first things most people say when they meet someone who has a family member with Down’s Syndrome…

dsu

“Oh, I hear they are so loving, and very musical too.”

Firstly I have to say that I never roll my eyes, or even inwardly tut, when people say things that bely their limited knowledge of Down’s Syndrome. That was probably me once. I too didn’t know it was a ‘baby with Down’s’, not ‘a Down’s baby’ before I began on this journey. If people’s intentions are kind and they have taken time to come and talk to us, then we shall be ambassadors and leave them with a positive image of the people they met.

But yes, I have heard that before, and I am putting a penny in a jar every time I hear it. One day we will go First Class to Bermuda on the contents of that jar 😉

Read the rest here

NICE guidelines for treatment of autism in children and young people published

NICE, The National Institute for Health and Care Excellence, has today published new imageguidelines for the treatment of autism in children and young people. “Autism – the management and support of children and young people on the autism spectrum” has been developed in collaboration with the Social Care Institute for Excellence (SCIE) and is the culmination of a long period of public consultation.

The guideline includes the different ways that health and social care practitioners can provide support, treatment and help for children and young people with autism and their families and carers, from the early years right through to transition into young adulthood at 19. It states key priorities as:

  • Full access to health and social care services, including mental health services, regardless of their intellectual ability or any coexisting diagnosis.
  • Health and social care professionals working with children and young people with autism in any setting should receive training in autism awareness and skills in managing autism. This includes the impact of autism on the young person and their whole family or carers, how to assess risk and how to provide individualised care and support, ensuring a consistent approach across all settings.
  • Making adjustments to the social and physical environment and processes of care. This includes using meaningful visual supports, personal space and sensory sensitivity requirements and arranging appointments at the beginning or end of the day to minimise waiting time.
  • Working with parents, carers and teachers to use play-based strategies aimed at increasing attention, engagement and reciprocal communication in the child or young person. The guidance states that any interventions should be delivered by a trained professional.
  • Understanding enough about the child’s condition to be able to anticipate and prevent challenging behaviour. This includes being aware of sensory difficulties, any mental or physical health issues such as pain or anxiety, co-existing ADHD, communication problems or changes and difficulties at home.
  • Families (including siblings) and carers should be offered an assessment of their own needs, including personal, social and emotional support. Practical support such as short breaks and emergency plans and assistance with planning for future support of the young person.
  • Transition to adult services should inform and include the young person in the planning and, where appropriate, their parents or carers, as well as informing about their right to a social care assessment at age 18. For young people aged 16 or older whose needs are complex or severe, use the care programme approach (CPA) in England, or care and treatment plans in Wales, as an aid to transfer between services.

Research Recommendations

The guidance also made several recommendations for future research for the improvement of autism services.

  • A key worker approach for children and young people with autism and their families should be formally evaluated in a randomised controlled trial.
  • Managing behaviour that challenges in children and young people with autism. A group-based parent training intervention (such as educating parents to identify triggers and patterns of reinforcement) should be evaluated using an RCT.
  • Managing sleep problems in children with autism using sleep hygiene intervention or melatonin in children (aged 4–10 years) with autism.
  • Treating co-morbid anxiety in children and young people with autism to look at the comparative clinical and cost effectiveness of pharmacological and psychosocial (such as Cognitive Behavioural Therapy) interventions for anxiety disorders in children and young people with autism.
  • Teacher-, parent- and peer-mediated psychosocial interventions in pre-school children with autism to investigate if comprehensive early interventions such as the LEAP model, are effective in managing the core symptoms of autism and coexisting difficulties (such as adaptive behaviour and developmental skills) in pre-school children.

What NICE says not to use

The guidelines also state interventions that should not be used, which may prove controversial to some.

These are the use of neurofeedback or of auditory integration training to manage speech and language problems and the use omega-3 fatty acids to manage sleep problems.
The guidelines also state that the use of secretin, chelation or Hyperbaric Oxygen Therapy should not be used to manage autism in any context in children and young people.

The above is just a prėcis of the whole guideline,  that you may wish to read in its entirety, but it gives an overview of what is included. You can find the appendices here What do you think? Are you pleased with the guidance and will they improve services and treatment?

Learning Disability Week – our own superheroes

Mencap have launched Learning Disability week to raise awareness across the UK.

This year Mencap are celebrating families and recognising the hard work they do to support their loved ones.  Their theme is “Who is your Superhero?” and this has caused hours of conversation here at SNJ.

We came up with several people whom we admire and are inspired by, but no one felt quite right. This was because we both kept coming back to the same answer in our heads, but it just felt a bit sappy to say it out loud, being the bad ass gals that we are.

Who is that person, we hear you cry? Well, and we make no apologies, that person – those two people – are our husbands.

Debs:    I met Chris and within 18 months we were married.  I could be me with Chris – warts and all – and he was still happy.  Then Chaos in Kent arrived.  Within 10 months we were parents to K and 2 years and 4 days after our wedding the twins arrived and somehow we were parents to three children.  The next few years were chaotic to say the least – premature births, hydrocephalus, Visual Impairment, ASD, SLCN, Dyspraxia and a number of other labels were hurdles we had to face.  We had to sit outside operating theatres, sit beside incubators, learn a new language and system and somehow find time to just be mummy and daddy.  We also had to remember to be Chris and Debs – which as any parents will know is not easy – but somehow we did this and managed to stay together and more importantly, we also still smile and laugh together.

chris collageHe is a really hands-on Dad who has never once shown any disappointment or shame in having kids with disabilities. As far as he is concerned, we have the three most amazing children ever!  He calls them his “hat trick”.  He is the Dad who bores his friends with Youtube clips of the kids; he is the Dad who forgets that one of our children is blind and then tries to keep a straight face as J tells him off for walking him into an obstacle. He is the Dad who is more excited than the kids at the Cadbury’s outlet store and the Dad who has had to learn to share his beloved PS3 and PS Vita.  He is also the Dad who will do the appointments if I need a break.  When J was younger, he wore artificial shells in his eyes.  Having them fitted and measured was just too much for me at the time so Chris took time off work and these appointments became Dad & J time.  There was no sacrificing sighs or comments, he just knew that this was what I needed.

I write blogs, speak at conferences, support friends who run support groups, coach colleagues and I also run a parent carer forum – most of this on a voluntary basis.  I also provide training across the SE and in addition to all of this, I am a mum and wife!  I hate saying no to anything and I am an “ideas” person so often find myself sat at midnight on my laptop researching a new project or trying to keep all the balls up in the air.

Chris just supports me.  He listens to me rant about politics and personalities, he listens to me rave about a yet another new idea I’ve had, he even took to twitter so he could share my work.  He drives 40-50 miles to work each way every day and often, has to start making dinner when he gets home because I have been so full on with the kids or work that I’ve not got round to it.  He is the dog walker, the toy fixer, the go-to video game man, the bacon sandwich weekend man and he also cooks a mean roast dinner.  The kids adore him and watch for his van to pull up at night because they know there will be tickles, teasing, throwing into pools and all the other things they love.

Now, don’t get me wrong, before any women out there start thinking I am married to a saint, let me assure you that Chris is a total bloke – he worships Liverpool FC, drives a white van, can sleep through the loudest noises, doesn’t know how to put clothes in the washing basket and I have to “remind” him when certain tasks need doing (I say “remind”, he says “nag”).  He is however, a totally supportive husband, a much-loved and adored fun Dad – so yes, he’s my Superhero.

Tania:

Marco and I have been married for 16 years next month. It was not a long courtship. We got together on a Sunday, He gave me keys the following Tuesday, I moved in to his flat in Clapham the next week. Two months later we were expecting Son1, Two months after that we were engaged and five months later, we were married. I have never, in all that time, doubted that I married the right person.

m&tLike many parents of kids with Aspergers, realising your child is different is a gradual process and he has been at my side every step of the way.

Although we were 29 when we met, we were still kids and we’ve grown up together having plunged head-first into parenting. Sceptics thought we’d never last, especially with my somewhat flighty track record.

The two of us with a new baby that neither was really prepared for was like watching a TV comedy, me the ‘glamorous’ TV newsreader, him the handsome, witty.. er.. accountant. Both of us clueless. Especially because Son1 was not your average babe who defied the parenting manuals. Defiance is his middle name.

Son1 would lie between us and repeatedly raise his legs in the air and bang them down on the mattress in the middle of the night. He’ll get fed up in a minute, we thought. He did not. Marco had to hold Son1’s legs down to stop him – and that kid was strong, even at four months old. This was not in the handbook.

Sleepless, Son1’s eyes would glint scarily in the light of the street lamp outside our flat; it was a sure sign of things to come.

We made it through those long, difficult years of discovering that our boys had additional needs, diagnoses, relentless fainting attacks by Son2, screaming meltdowns from Son1, finding schooling solutions, making adjustments, applying for statements,  even moving home to facilitate all this.

I was bad-tempered, anxious, exhausted, often ill (which we now know is Ehlers Danlos), irritable when under stress, which was most of the time.

And Marco? He was patient, understanding, loving, constantly helping me, even coming home from work because something had happened that I couldn’t cope with.

Now, when the boys are older, instead of things getting easier, the opposite has happened because of my illness. His life has got harder, taking on the lion’s share of driving the boys around, cooking, tidying, learning a new role of pushing me in a wheelchair, which is hard for both of us to come to terms with.

I meanwhile, am reduced to hobbling around, frequently sleeping for hours, constantly popping strong pain meds, doing what I can, which isn’t much.

This is not what we were expecting, but he has handled it in the way he handles everything; calmly, with good humour, wit, and charm. He was once named in his junior school class as the person most would like to be friends with and it’s easy to see why.

Every parent of kids with additional needs will understand when I say that my youthful dreams of an exciting, adventurous life have long since been replaced by wishes of a calm existence. It’s enough of a roller coaster ride living with your children.

My husband is my own superhero and source of calm; the perfect foil to my Type-A-ness that brings me ambition but also trouble if I drift too far away. He is the touchstone that I need to remind me that just being alive and together is sometimes enough success for one day.

#ThisIsMyChild MumsNet Special Needs campaign

Tania writes…

MumsNet have today launched a new “myth-busting and awareness-raising” campaign called #ThisIsMyChild.

thisismychild-250It’s been launched in response to requests from MumsNetters and supported by input from some of the leading charities in the field.

Its aim is to support parents of children with additional needs, inform everyone else, and open up a conversation about how we can all act to make life easier for everyone caring for children with additional needs.

I am delighted and very excited to have been asked to support the campaign and will be picking my favourite posts from a Linky being launched on Tuesday – so standby for that.

Debs and I will  also mention some of the posts here on SNJ as the campaign progresses.

For this campaign to be a success MumsNet need it to reach far and wide, so please share as widely as possible – via Twitter (@MumsnetTowers), on Facebook , Google+ and anywhere else. You can use the HashTag #ThisIsMyChild on Twitter, Facebook & G+ too.

Already up is a Gallery, Mythbuster, Strategies and Facts and Figures.

The Mythbusters have been collated with help from campaign partners, Every Disabled Child MattersContact A Family and Mencap, and with help from the National Autistic Society.

The strategies is worth reading: I recall once, after the committal of my mother’s ashes, far from home, we went for a pub lunch and ASD Son2 was upset, refusing to eat or drink and had his head down. A woman across from us stared and tutted disapprovingly the entire time until I had finally had enough, got up and challenged her. She replied that she was actually staring at me (which she wasn’t)! Rude and a liar! She soon left. It still makes me cross to think about it, six years later.

Anyway, the campaign is definitely worth joining in with, adding your special needs blog posts to the link when it’s launched,

In case you didn’t know, MumsNet has a whole section on Special Needs with lots of information.

Of course, bloggers who write about their children with disabilities are every week trying to raise awareness, so it’s great that MumsNet is giving all those blogs a boost and helping the cause in such a high-profile way.

If you haven’t been to the MumsNet site in a while, you should pop over as it’s not just for mums of babies, but has an enormous amount of information on parenting, skills & careers (MumsNet Academy) too.

blogfest_headerWhile we’re on the subject, I’m thrilled to say I will be on one of the panels at MumsNet BlogFest joining lots of high profile speakers at the event such as Prof. Tanya Byron, one of my favourite writers, Lionel Shriver, and Louise Mensch. (I’m sitting here going ‘Lots of high profile speakers….and me.)

It takes place on Saturday November 9th. I’ll be easy to spot, probably in the wheelchair with long-suffering Debs pushing. Please say hello if you’re going – I’ll be more scared than you!

Does your child know “no means no”?

Debs writes….

I am a trainer for my local Safeguarding Children Board and it is a subject I am passionate about.  One of the people who inspires me, as a mum and and as a trainer, is Emily Martinello.  Emily is a Sexual Development Consultant in Nova Scotia, Canada and here she talks to SNJ about the importance of teaching our children to know how to say “no”.

skotan_No-sign“The worst part of my job as a Sexual Development Consultant, is that I am the bearer of bad news.  My suture is education, support, and resources, and I do my best to fix the band-aid burn.

What research shows us is that up to 80% of women and 30% of men with intellectual disabilities are sexually abused before the age of 18.  That is more than four times the rates of their typically developing peers.  What we also believe to be true is that more than half of these abuse situations are chronic, meaning by multiple people, or on multiple occasions.  There are many components contributing to this high number, and there are opportunities for learning throughout the lifespan that can hopefully reduce each one.

No means No

There’s a stage everyone seems to dread, the “nos”.  When children say “no” to everything.  I guess no one likes it because it’s annoying.  I, frankly, love it.  (Full disclaimer: I don’t have my own kids yet- so I love these “stages” more than most!)  I love it because I love that children are learning to exert their independence.  They’re learning the building blocks to consent.

I was at a dance camp a few weeks ago for children and youth with special needs, and listened to a volunteer fight the “no’s” to trying on a costume.  My “Sexual Development” brain was screaming “who cares?  It’s a costume”, but I can see where the volunteer’s helper brain was going “it’s camp, we have costumes, it’s fun!”

Luckily, I was saved by the dance teacher who said “it’s okay, she doesn’t like costumes”.  PHEW!  But how many times does this girl get her no’s rejected on a regular basis? And what is she learning each time?  I’ll tell you: that her “no” means nothing.  That she doesn’t have the right to say no to something.  And really – it’s a costume!  If she can’t say no to that and mean it, how is she going to know to say no to the big things?

Of course there’s a second part to “no”- the hearing part.  There’s a new trend in caring for children, where saying no is a no-no.  Instead, care givers are supposed to say things like “first you need to”, or “not right now”, or “gentle hands”.  The problem with this is that children aren’t hearing “no” enough in a meaningful way.

When we think about sexual development, knowing “no” is one of the most important skills we can teach.  Saying “no” to things like “do you want to clean your room?”, “can you help me out?”, or “do you want grilled cheese for lunch?” is just the beginning.  Eventually, there may be bigger “no’s”- whether it be “sex” as a relationship, or maybe it’s some building blocks to keeping children safe.  Things like “NO, you can’t come in the bathroom”, “NO, you can’t change my clothes”, “NO, I don’t want your help in the shower”.

main_okYes means Yes

There’s some good news, too!  We want children to be able to say YES!!!  There are many opportunities for healthy, loving choices to be made.  This can be things like “do you want to play blocks with me?”, “will you be my friend?” YES!  YES!  YES!  Later on, this could include saying yes to things like, “can I take you on a date sometime?”, “will you kiss me?”, “Can I see a Doctor?” YES! YES! YES! Likewise, hearing “yes” is also valuable.  YES, I want to be your friend!  YES, I want to play with you! YES, let’s go see the Doctor!

Finding opportunities for teaching yes and no are everywhere – it’s the listening to the answer that’s the hard part.  Sometimes it’s all in the way the information is presented, “are you all done?” becomes, “it’s time to clean up now”.  “Let’s go outside, okay?” becomes “we’re going to go outside!”  Be prepared, if you are the one who asks the question, you’ve got to be the one who accepts the answer.

Knowing the No

The thing is, children with special needs don’t always get the chance to really ‘know the no’.  Sure, there may be a brief stage of “no’s”, but the stage is often accompanied by a lifetime of “yes’s”.  As part of education and therapy, compliance is pretty key.  But in the real world, over-compliance is dangerous.  This raises the concern about children being liked- that being non-compliant might look like being unfriendly, unwilling, or unable.

However, typically-developing children don’t typically need to prove that they are friendly, willing or able.  At least not by being testing with compliance.  Children with special needs shouldn’t need to prove this either – in fact, I’d go on a limb and say they just shouldn’t answer that test.  If there’s someone in their life who needs the child to prove who they are, there’s the proof that they’re not welcome.

There’s also another bonus,  once a child learns that they can say “no” and mean it, they don’t need to try it out so often.  We can use the “no stage” as a platform: to listen to, honour, respect, and admire a child’s ability to be a self-advocate.  And ultimately, to set the stage for knowing themselves, No-ing themselves and no-ing others.”

You can find Emily on Facebook Sexual Development Consulting or you can ask questions here.  Emily is happy to write more posts for us regarding sexual development for our children so what would you like advice on?

The TES SEN Show – SNJ will be there! (Early bird seminar offer)

You might have seen a logo top left on the site about the TES SEN Show in London on 11th & 12th October.

SNL12-mini-imageThe big news is… SNJ will be there! Large as life, Stand 45, me and our Debs and maybe some other contributors as well, as it’s over two days. Even better – it’s FREE to attend the show and  workshops.

There are also seminars which attract CPD points for practitioners and there is an early bird rate until 24th July so don’t delay!

We’re so excited to be invited and are currently figuring out what to have on the stand – but you can guarantee we’ll cover lots of SEN resources about the things we write about – and of course the very excellent SNJ pens! It’s worth coming just for one of those.

We aim to be the most informative stand at the show – so why not let us know what kind of resources you think would contribute to a great stand in the comments below?

Check out the information below for all you need to know whether you are practitioner or parent. And don’t forget to stop by and say hello if you visit!

TES Special Educational Needs Show, London
Business Design Centre – 11th and 12th October 2013

Come celebrate a world of SEN at the UK’s longest running SEN show!

 image001

TES Special Needs London is back this autumn and it’s bigger and better than ever. It has the resources, ideas, advice and CPD to provide teachers, SENCOs, support staff and parents with the tools and skills to help all achieve their goals.
Special 21st year

  • Join us to celebrate 21 years of being 100% dedicated to SEN. Celebrations include VIP/Celebrity host, My SEN mobile app, Cake, Presents, special show discounts and competitions galore.
  • New CPD Seminars Always 100% dedicated to SEN: within our inspiring 2013 CPD seminar programme you will learn about the latest issues from top SEN professionals.
  • Fantastic free workshops
  • Discover thousands of resources to compare and buy for every kind of special and additional educational need.
  • In celebration of our special 21st birthday, we are giving all those attending the fantastic ‘My SEN’ mobile app that will ensure you get the most out of your TES SEN show experience. My SEN will be available for download to all attendees in August.

Register for free and get your hot seminars tickets now before the summer holidays begin!
Early bird discount ends 24 July after which only standard ticket price will be available.

  • Visit our new website for all the latest news.    

 

Special Educational Needs Reforms – sorry, what?

You know us, we talk about the reforms to SEN currently going through parliament. A lot.

It’s important stuff and if done properly, will revolutionise the experience of future generations of SEN children. And parents – i.e., you and us, are fully (in some areas) involved with the process.

pushchair[Cue screeching of Mclaren Major and wheelchair tyres…]

We’e sorry, what? What the heck are we talking about? You know, the SEN reforms! You know almost nothing? No way!

Yes way… And how do we know this? Because we ran a survey to find out. And not only was knowledge about the reforms much lower than it should be, but almost three-quarters of people answering were worried that the changes would mean their child would end up worse off, losing provision.

The results are in, and it would appear that the DfE and local authorities need to seriously address the issue of communication.

  • 90% of respondents were parents, the other 10% were either practitioners (7%) or parents who are also practitioners (3%).
  • 66% have a child who currently has a statement and 19% had children on School Action or School Action +
  • Of those who had a statement, 15% had to go to SEND tribunal to either get a statement or to get a statement fit for purpose.
  • 174 people responded to our survey (thank you). Of these respondents, 61% lived in Pathfinder areas. Our highest responses came from SE and NW England.

surveygraphic1One finding that we probably didn’t need a survey to find out is that the cost of a Tribunal is high – both emotionally and financially. Especially when LAs often insist on purchasing extremely costly external legal representation. This is one of the reasons why parents welcomed the aspirational Green Paper way back in 2011.

So why, then, do only 10% of our respondents believe the Government is doing the right thing with the proposed changes and 45% of respondents believe this is not the right thing? Some replies:

The government is working on the incorrect assumption that all schools care about SEN students”

Rushing the Bill through before the Pathfinders have done their work is wrong”

The new Bill does absolutely nothing to address the problem of inadequate resources or how to make LAs accountable”

Question: Is the Local Authority you live or work in a Pathfinder?

This was a real eye opener. Almost half – 48% – of all respondents did not know. Even more shocking, 41% of those who were in Pathfinder areas didn’t know and 4% said they were not. So within Pathfinder areas, 45% of respondents did not know that their LA was a Pathfinder.

Question: Have you been involved in developing the SEN reforms in your area?

6% of all respondents had been involved extensively (this was slightly higher at 9% in Pathfinder areas). However, 67% of all respondents had received no information from their LA (via any method) about the SEN reforms, this was only slightly lower at 59% for those who lived or worked in Pathfinder areas.

  • 50% of all respondents knew very little or nothing at all about the SEN reforms – and this was the same in Pathfinder areas which is really concerning.
  • 72% are concerned that their child will lose provision under the proposed changes.
  • Only 8% are convinced that children and young people will have the same legal rights
  • Only 31% know where to go to find more information, 41% do not know where to find it within their own LA.

I am shocked as to the number of teachers and parents who know nothing about this, especially SENCOs”

surveygraphic2The Local Offer

71% of respondents knew nothing, or very little, about the Local Offer – this was only slightly lower in Pathfinder area (66%).

We asked what people thought the Local Offer was and overwhelmingly, parents believed it was either just related to Short Breaks or cash related. Some responses:

Set amount of money per child with SEN”

An amount of cash held by the council for people with SEN within their area to be allocated as they see fit”

This is to do with Short Breaks, like we had under Aiming High – what short breaks are on offer locally

Only three people responded with any real accuracy: “A web based “mind map” of the journeys families take and how to access help along the line“. Several people still presume there will be a resource directory – which was met with ridicule based on past experiences.

  • 71% did not know who would be able to access the Local Offer (67% in Pathfinder areas)
  • 42% were engaged with their local Parent Carer Forum (but many commented that they would now be contacting them to find out more)
  • 53% knew nothing (or very little) about the proposed EHCPs
  • Only 8% think the School-Based Category (to replace School Action/School Action+) is a good idea, but 51% admitted that they did not know enough to make an informed decision
  • 66% knew little or nothing about the offer of Personal Budgets (this was 67% in Pathfinder areas)
  • Over 50% were unsure about whether Personal Budgets were a good or bad idea.

I think the idea is really good but there MUST be good LOCAL support for families, provided by people who know the area – not a national box-ticking company”

surveygraphic3Keyworkers

In the Green Paper, there was lots of mentions of Keyworkers for families and families were all delighted. However, once the draft Bill arrived along with the draft Code of Practice, Keyworkers became a good idea but not essential. We asked if families should be given the option of a Keyworker to support them through the process and should this offer be a requirement, rather than a recommendation and 76% said yes. In Pathfinder areas, this rose to 81% – and that speaks for itself.

We asked people to give general comments throughout the survey and I have chosen my particular favourite.

“What needed to change was LA/LEA/School accountability to parents and children so they delivered what they were supposed to deliver. The law in itself was good – it was just the power to enforce pre-tribunal that was weak”

It wasn’t a huge survey but still, there is much to be taken from it regarding the views and level of awareness of parents. Some of the changes were needed (e.g. education to 25, not having to wait 26 weeks for a statement) but the biggest change needed is culture change and the proposed Bill does nothing to address this (even if Mr Timpson has spoken of its importance). If it ain’t in the Bill, it means nothing.

So we would like to ask HOW will the DfE and Local Authorities ensure that parents, children and young people are involved and informed? This Bill is travelling fast so time is limited; they need to take action now.

Congratulations to the 5 winners of the e-book version of Tania’s “Special Educational Needs, Getting Started with Statements.” Emails with single use codes to download your book from Smashwords ebook hub will be landing in your inbox in the next few days.

Pie Charts: Marco Tirraoro (Financial Modeller & Business Partner Extraordinaire)

Summer’s here: Where are we in the SEN reform process?

Tania writes

Well, good question.

The answer is we’re here, there, everywhere and nowhere, depending on which county you live in.

cdc_timpsonjuly2013As the long summer break approaches (and enjoy it while it lasts as Mr Gove has it under his microscope – though I can think of better places for his microscope) let’s take a look at where we’re up to.

This is an easy exercise, as Ed Timpson, the Minister in charge, who certainly seems to be a very genuine and well-intentioned person, has written today to the Council for Disabled Children with his own round-up of the broad facts.

You can download the letter for yourself here but to summarise:
  • The Children & Families Bill has now completed the House of Commons stages of the Children and Families Bill and has just completed second reading in the House of Lords. Ed Timpson said, “I have very much welcomed the engagement of many sector and parent-carer organisations in the careful scrutiny of the Bill clauses. The debates in the Bill Committee and in the House were rightly challenging but also constructive.”
  • The CDC has worked with the DfE and produced a leaflet explaining in more detail the reforms to the SEN funding system. The leaflet explains clearly that the funding changes do not change the legal responsibilities of schools and local authorities for children with special educational needs.
  • The indicative Code of Practice has been published and a full consultation will begin in the autumn.
  • CDC and DfE have been discussing the arrangements for reviewing Education, Health and Care Plans, especially the reports parents and young people receive about annual review meetings and the year 9 transition reviews.

As we develop the Code of Practice, it will be important to write it in a way that supports a real improvement in outcomes for those with SEN in schools and colleges in order to meet the Department’s wider aims to improve attainment and close the gap. Ed Timpson MP, Education Minister.

  • The DfE is now thinking more widely about implementing the reforms, and how to manage the changeover to a new legal system from September 2014. It is not proposed to move wholesale to the new system from September next year; rather it will be the beginning of a period of gradual and orderly transition to full implementation.
  • The pathfinder champions are now holding their first regional meetings to support non-pathfinder areas, and have recently shared core learning points through a series of information packs, which can be found here
  • The DfE will be providing £9m in 2013-14 to support local areas to prepare for implementation.
  • Evidence from pathfinder experience and evaluation reports have emphasised the value of early engagement with parents and parent carer forums. (Hurrah!)
  • The DfE will be publishing more information in early autumn to continue to support implementation.
  • Additionally, not mentioned in the letter, the 20 pathfinder areas have all developed or are still developing their own versions of an EHCP and Local Offer, Personal Budgets, Transition plans and so on. Lots of money spent, lots of work carried out and quite a number of minds changed on both parent and practitioner sides about one another.

All very nice (or as my SEN barrister friend Gulshanah, would say sweetly and with a ton of barely-detectable cynicism, ‘That’s lovely, isn’t it?’

Recently, SNJ published two posts raising concerns in the bill, none of which seem to have been addressed so far. You can read the posts here and here to see the issues that remain. The letter doesn’t answer these questions, with the exception of the Annual Review question which is under further consideration. To make for easier reading, we’ve combined them into one easy to download PDF

senreformmontageWe do hope that these problems and omissions will be tackled in the autumn as the next parliamentary stages are started, as Mr Timpson says himself, “I am aware that there will still be some areas that you and others in the SEN and disability sector will want to see evolve further as we start the next Parliamentary stages in autumn. lt is very much the right time to raise these points so that we can continue the constructive dialogue between the Department and the sector.”

We, and we hope, you too, will be continuing to work as much as possible on influencing the bill through the channels that we are part of. It is so important to stress that everyone concerned with the bill has an opportunity to make their voice heard. For parents, this is most likely to be through their local parent-carer forum.

For parents who have SEN children,the upcoming consultation of the Code of Practice will be a huge opportunity to have your say. This is where the rules and regulations will be written and if your child doesn’t have a statement/EHCP, this is even more important. Read the draft – you don’t have to do it in one go, take the whole summer to comb through it and make notes.

Your voice may be the one that makes the difference. It’s easy to complain when you don’t like something, much harder to do something about it so if you are in a position to, do make your voice heard.

Later this week we will be publishing the results of our survey into how much SEN/D parents and carers know about the SEN reforms. They make for startling reading. As a taster:

  • 40% of respondents in Pathfinder authorities did not know if their area was a pathfinder or not.
  • 60% of those in Pathfinder areas had heard nothing about the Pathfinder
  • Just over 50% do not feel they know enough to say if the school-based category is a better idea than School Action/School Action Plus

We need as many parents and carers to be as informed as possible, whether or not they can be or want to be involved. Local authorities, schools, colleges, children’s centres need to do a better job of funnelling information through to parents about the reforms and about their local (voluntary and over-stretched) parent-carer forums.

There’s no space to tell you how to do that, though as an experienced charity PR, I have plenty of ideas. I would hope every Local Authority’s Comms Department do too!

Evaluation of SEND pathfinder report – some nice weekend reading!

senreform2The Children and Families Bill has had a busy week, having a third reading in the House of Commons and then a brief first reading in the House of Lords.

It really would be nice, by the way, if the DfE could provide a little bit better public notice of these events for people who like to follow them.

I watched most of the Commons reading but just haven’t had time to write about it, although many interesting points were raised, particularly by the Labour Education spokesman, Sharon Hodgson and Robert Buckland MP, who has himself worked on many SEND tribunal cases.

If you’d like to watch the reading yourself, you can do so on parliament live TV here

The DfE has now published an “Evaluation of the SEND pathfinder programme” as a nice bit of weekend reading.

This report is the first of two volumes containing the evaluation findings from the first 18 months of the Special Educational Needs and Disabilities (SEND) pathfinder programme.

To recap:

Twenty Pathfinder sites, comprising thirty-one local authority areas were tasked to develop and trial: an integrated assessment process: a single, joined up ‘Education, Health and Care Plan’; and personal budgets across education, social care and health, and adult services as appropriate for children and young people from birth to 25 years.

Debs and I are parents-carer reps for Kent and Surrey respectively, part of the SE7 pathfinder group.

The evaluation’s key findings highlighted that the pathfinders have invested considerable resource to establish new processes including: the assignment of a key worker so that families have a single point of contact; the development of personal profiles through which families and young people can express themselves; adopting person centred planning approaches; and moving to a single EHCP document.

The general feedback around each of these developments has been positive. Pathfinders appear to recognise the advantages of working differently, and are positive about the impact of the changes.

Both the new process and the underlying ethos were seen as important. The changed approaches were reported to have increased choice and control for families. In all cases they were involved in the development of outcomes and agreeing the plan to meet these outcomes. The challenge of a shift to focus on outcomes was clearly demonstrated, with many key workers reporting finding the development of outcome based plans challenging.

It also noted that further workforce development and support for cultural change will be important moving forward. I should coco! Not only important, but absolutely vital and top of the list. And if we’re finding it a challenge in the pathfinders, imagine the job those other councils outside the trails that groups like the SE7 are to mentor are going to face over the coming months.

Still, I have been mightily impressed by the work being done and the positive approach that I’ve seen and I have high hopes still.

Problems remain however and we will have more to say, of course, about our opinions on this.

In the meantime, if you would like to read the report, you can find the page here

I’m now off to my youngest’s GCSE options evening. Really not sure how he got that old so quickly. Or me!

Sayonara, School Action and School Action Plus

Debs writes….

senreform3The Government is proposing to replace the current categories of School Action and School Action Plus with a new single early years and school-based SEN category.  This will mean that your school of choice will have to comply with clear guidance from the Government on the appropriate identification of pupils with SEN.  This guidance will include a clear process for identification and assessment of pupils, setting objectives for pupils, reviewing progress and securing further support.  This will be set out in the new SEN Code of Practice  – an indicative draft of the Code of Practice (COP) is already available.

Take a look at the Code Of Practice, specifically Section 5.4 looks at Identifying Needs, 5.5 looks at The Four Primary Areas of SEN and 5.6 covers Additional SEN support in settings.

Tania and I have written about the draft Code of Practice in previous posts which can be read here and further views here

One paragraph in 5.6 leaps out to me as a parent :

“It is the responsibility of educational settings in consultation with parents, and, where appropriate, the young person, to decide whether a child or young person requires Additional SEN Support. They must ensure that children and young people who receive Additional SEN Support have an identified SEN and that their progress has not been hampered by weak teaching or poor attendance”

Does your school consult with you?  Do you know now if your child is School Action or School Action Plus?  Did your school involve you in the decision to place (or remove) your child in this category?  Do you think your school will admit that your child’s progress has been hampered by weak teaching?

The Ofsted review of SEN (2010) found that nearly one fifth of the schools visited suggested that they provided additional SEN support when, in other schools, such provision was regarded as the norm.

Therein lies a huge part of the problem.  We all know there are schools where the staff will do all they absolutely can to ensure your child reaches their full potential and then there are schools which prefer to lay the lack of development at you and your child’s feet.  I am very fortunate in that all three of my children are now in schools that take the former stance and not the latter.  However, I do personally know of schools where there is not a chance in a million that they would ever admit they were perhaps the problem.

Ofsted reports do not always reflect the true representation of SEN in schools – we all know of parents asked to keep their child home for the day Ofsted are arriving or their Ofsted questionnaire somehow not making it home.  Would these schools be holding up their hands to say “oh sorry, some of our teaching is a bit weak”.

The proposed removal of School Action and School Action Plus is part of the Children and Families Bill.  After considering the Ofsted review of SEN (2012) and the Lamb Inquiry (2009), the Government believe the current system emphasises labelling children’s need according to the support  needed rather than the outcomes sought for the child and can lead to children being unnecessarily labelled as having SEN.  It also found that ‘there is a risk that the use of the SEN label itself leads to lower expectations or less vigorous intervention.

beaconThe Lamb Inquiry (20091) reported that SEN can sometimes be ‘unhelpfully collated’ with falling behind, and this may have contributed to the growing number of pupils at School Action and Action Plus.   Did you know that at the end of Key Stage 2, August-born pupils are 60 per cent more likely to be identified as having SEN than September-born pupils?

The Government believe that removing the need for a label of SEN, will challenge schools to improve the quality of teaching and learning for all pupils but what do you think?

Once again, we come back to the culture change needed.  The new Children and Families Bill and indicative draft Code of Practice do not totally reflect the aspirational Green Paper that so excited so many of us.  However, it is still a draft and as a mum, my main concern as I read through them is this tells us what the goal is but not we actually get here?”

What about the very basic communication to families and practitioner of the proposed changes.  If we can’t get that right, how do we propose to get all of the changes right?  Have you heard about the changes in your LA?  Take our quick survey and let us know – we will be sharing the results with the Department for Education.

There will always be great schools, management, LA Officers and staff (our Beacons of Good Practice) but there will also always be poor schools, management, LA officers and staff.   As long as that fact does not change, then does it matter what they call the provision of additional SEN support in settings?  What do you think?

Special Needs Jungle Drums!

Some great stories, news and blogs from the last week, curated from us, just for you.

  1. This is next week – so still time to mark the week!
  2. Congrats to Debs at Aspie in the Family…
  3. An interesting first hand account.
  4. Congrats to Renata and Swan UK on their first birthday
  5. A lovely post from Susan
  6. Get ready to expunge the word Asperger’s from your vocab! I’m off to a workshop on Monday with Tony Attwood & Carole Gray and I’ll be asking him about DSM V categorisation – will he need to change his book title?
  7. A very interesting article, not to be missed.

Want to know what SEN, AAC, SALT, etc st

Want to know what SEN, AAC, SALT, etc stand for? @kent_peps have a new SEND glossary http://ow.ly/kTo7y

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

My son and his literal world

Debs writes….

My eldest son, K lives in a very literal world and we spend half of our day trying to watch what we say, and the other half paying for the fact that we forgot.  “Watching what we say” – there you go, that phrase would have K staring at our faces to “watch” what we are saying.

Inititally, this caused us heartache, for example when we saw him closing a door and shouted “watch your fingers” and he did.  He watched them as he closed the door on them.  We hadn’t said “move your hand away from the door”.  However, it has also caused us some huge entertainment.

For a long time, K believed my name was “Hiya”.  When people visited us, the first thing many of them said as they walked through the door was “Hiya” and K truly thought this was my name.  When I intitally suspected this, I said to my parents “I’m sure he thinks my name is hiya” so that evening, at dinner, my dad said “Hi K” and K responded “Hi Grandad”, then my mum said “Hi K” and he responded “Hi Grandma” and then I said “Hi K” and he responded “Hi Hiya”.  Mummy Hiya was confirmed.  This did amuse us, especially when I left him at nursery and he would respond “Bye Hiya” or “See you Hiya”.  Yes, I know that this could be interpreted as me laughing at my son but nothing could be further from the truth.  We have to get through this jungle with some sanity intact so for us, a sense of humour is essential.

As he got older, K realised that my name was Debs and he also understood that I was his mummy.  However, he chose to call me Debs.  He would return from school and say “Hiya Debs, where’s Chris” and I would reply “Daddy is at work”.  This went on for some time and still does, however, when we asked him why he called me Debs and not Mummy, he gave me a very confused look and replied “But you don’t call me Son, you call me K”.  So yes, why should he call me Mummy – which is in fact my relationship to him – when I call him K and not Son.

Sometimes his logic just stumps me for a response.  On one occasion, K had been settled in bed, however, when I finished making a brew and walking into the sitting room, he was sat in there.  I asked “Why are you not in bed” and his response was “because I am sat down here”

shameOf course, living in such a black and white world, with little understanding of social rules can cause some issues.  Usually mortification

We had one occasion when I was trying to plug him into a booster seat with one other child (in a booster seat) and a non-petite lady in there too – not an easy task.  So how mortified was I when I asked K to move towards me and he responded  “it’s not me, it’s her – she’s fat”.  Now as a non-skinny lady myself I was horrified for this poor lady and I told him very firmly that we don’t use this word, it’s not a nice word and he was plugged in and off they went.

That evening, I asked him how the day was and he replied it was okay, I asked about the journey and he said he was “squished” in the car because the lady was fat.  I explained again, this was a word that makes people feel sad inside and not a nice word to use.  The next morning, we walked out to the car and I suggested that it may be nice to apologise for using that word and he was happy to do this.

We got to the car, he sat down and as I plugged him in, he offered an apology.  “I am sorry I said you were fat yesterday, Debs has told me that it is not a nice word and it can make you sad inside which is not nice”.  The lady accepted the apology, I smiled with pride and then……..

“Debs, it’s not my fault I am squished in here.  It’s her, she is overweight and needs to go on a diet”  The driver at this point choked, I was looking for a hole to crawl into and K said “is that ok, Debs – I didn’t use the word fat so no one feels sad.”  Want to bet?

So yes, the literal world can be amusing, heartbreaking, mortifying and a real challenge but we try hard to keep smiling.   I would love to hear your experiences, maybe we can all help each other.  We now have a rule with K that he doesn’t comment on people’s height, size, colour or clothes unless they ask him to.    What rules or tips do you have?

Parent Carer Forums

Debs writes….

Tania and I are both co-chairs of Parent Carer Forums and we do mention them quite a lot.

Tania Co-Chairs Family Voice Surrey with the lovely Angela.  Angela shared her experience of meeting Mr T with us on Valentine’s Day.

I KentPEPsLogo92dpiRGB_web2Co-Chair Kent PEPs with the fab Sarah, who knows when to reign me in and also is one of the most organised people I know.  Sarah will be the person who has printed everything off before our meeting and the one who replies to emails quickly.

What is a Parent Carer Forum?

A parent carer forum is a group made up of parents and carers of disabled children who work with local authorities, education, health services and other providers to make sure the services they plan and deliver really meet the needs of disabled children and families.

The forum represents the views of parents in the local area but does not advocate for individual families. There is usually a steering group of parents who lead this and listen to the views of other parents in the local area to make sure they know what is important to them. Forums are keen to make contact with as many parent carers as possible.

In England there are now forums in almost all local areas.

Who can join a parent carer forum?

Forums are ‘pan disability’ which means that parents or carers of a child with any type of additional need or disability are welcome to join – as they are likely to need to access services and support. Joining your forum does not mean you have to commit lots of time. In most forums you can join and receive information, and you then decide if you want to get more involved at your own pace.

Taken from Contact a Family website 

We are all part of a National Network of Parent Carer Forums (NNPCF) which is  a network of parent carer forums  across England. It too has a steering group made up of parent carer representatives from across England.  NNPCF make sure that parent carer forums are aware of what is happening nationally, and that the voice of parent carers is fed from local parent carer forums into national developments, working with the Department for Education, the Department of Health, and other partners.

Contact a Family support the work of the National Network of Parent Carer forums and offer us relevant training and a variety of conferences and regional meetings.

If you would like to find out if you have a local Parent Carer Forum, then we have added a page to our site with their details for you.

If you are a member of a Parent Carer Forum steering group, we also have a group on Facebook which you are welcome to join.

Gcontactetting involved with your local Parent Carer Forum is such a great way to have a say and really help to influence decisions made about services in your area.  Most of the forums are always looking for new members to participate so get in touch.

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 meet SEN Minister, Edward Timpson

So the big day arrived and of course, it was raining. Tania and I headed into London, to the Department for Education, to meet the Education Minister in charge of the SEN reforms, Ed Timpson.

Unfortunately, there was ‘the wrong kind of ice’ on the conductor rail and  so I sat at Waterloo for half an hour while Tania updated, “At Wimbledon and moving”, “Now at Clapham”, all the time watching the clock.

Eventually we arrived, and the lovely Jon arrived to escort us up to Mr T’s office.  While we waited for the Minister to finish another meeting, Jon introduced us to some mums who blog about their own special needs children and who’d come along via Tots100 – one all the way from South Wales and another from up in Manchester. Hats off to them for making the effort!

We received a very warm welcome from Mr T, who didn’t look at all daunted by the prospect of meeting several passionate SEN mums.  Then again, perhaps he missed his vocation in life and an Oscar could have been his for the taking if he had chosen a different career route.

snj-ET

Debs (left), Mr Timpson, Tania

The mums gathered had children with varying difficulties and were at different stages of the process of trying to secure support, but the main thrust was of the outrage and distress parents felt when they were forced to fight for what their disabled children needed.

The Minster asked us to share with him one thing we would change or we considered an issue.

The one thing that was very noticeable was the amount of nodding heads from all of us as each person relayed their concerns or suggestions – it was very clear that as parents, we all know our children and we’ve all had similar experiences and issues.  The solutions we suggested were all similar too.

I felt a genuine sadness that the bad bits – the bits  you think only happen to you or in your area – were  happening to many others across the whole of the country

Parents often feel they are not an integral part of any decisions made about their child – often they are talked at, rather than talked to.  The whole process can become, and often is,  adversarial, with parents feeling that it is often just a case of the LA showing us who is in charge.  As parents we want to engage and play a role in our child’s life but legislation alone won’t make this happen.

Aside from Tania & myself who, as you know, are involved in our own areas developing plans for SEN reform as part of the pathfinder, one mum was taking part with her family in the trials themselves (and we’re looking forward to hearing more about it from her soon) while others were less knowledgeable about the stage the reforms are at. I suspect that may soon change!

It was telling that most had felt a lack of support and signposting but there were several mums who could point to excellent help they had had and we think this 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. What a great incentive, to have your service win such an accolade!

Tania & I raised our concerns about the massive task of culture change needed to drive forward the Children and Families Bill and to ensure it meets the outcomes it was initially designed to produce, but more positively, we also tried to offer some solutions to that and will be sharing our ideas and contacts.

Key working (and a named key worker) were the one thing we all agreed with.  Parents want to have the confidence that practitioners within different agencies (and sometimes practitioners within the same team) will actually speak to each other. As that doesn’t happen at present and there are not clear signs that it will be happening anytime in the near future, there was also the recognition that parents need someone who is just there to help them (independent advocates), someone who knows the system and the resources available, someone who can be your guide through the local offer.

charlie

Charlie Mead

Another point your intrepid SNJ advocates raised was the huge potential for “nurture groups” to create a backbone of support for vulnerable and troubled children within schools.  Children sometimes present with what appears to be an SEN, but this can be exacerbated by unmet emotional or social needs.

When given the right support through this type of group, can then integrate back into universal services.  Tania talked about the great work that child psychologist, Charlie Mead, has done with the use of nurture groups in a previous post – Special Needs Jungle in the Telegraph – what I really think and we hope that Charlie will be able to share his experience with Mr Timpson, who was extremely interested in the concept. If commitment and funding for nurture groups can be mandated or at least added to the Code of Practice, this could be a real way to help families and children succeed.

Generally, the meeting was very positive.  Mr T did appear to listen to what we were saying and he was very keen to stress that the Code of Practice was an “indicative” draft, which will be informed by the findings from the pathfinders and SEND pathfinder partners.

desperatedanHowever, as parents who don’t often get to bend the ear of “The Man That Can”, this was our chance to indicate to Mr T and his trusty team that the indicative draft is at present rougher than Desperate Dan’s chin.

We will be working with other parents and practitioners to try to influence plugging the gaps and, in fact, Tania is attending a Code of Practice workshop next week.

We were given the contact details for the Minister’s team and asked to let him know of anything that was working well and were all told to “keep blogging”.

We can promise him, and everyone else, that we most certainly will.

Draft SEN Code of Practice: Further views

Debs writes….

As the Indicative Code of Practice was published, I was in Guildford delivering Early Support’s Key Working in Practice capacity building training.  I was lucky to have ten amazing ladies attend, all of whom understood the benefits of key working and working in partnership and wanted to see this working in their own areas.  I walked away from the training feeling really positive about what the future could look like.

After a long journey home – does the M25 ever NOT have roadworks? – I sat down and started to wade through the new draft CoP and regulations.

Edward Timpson - junior minister in the Department for EducationI was initially hooked by the line in 2.1 Introduction (A Family Centred System) “Parents know their child best” and I would like to thank Mr T for getting this line into print – it was long over due.  We don’t always claim to be an expert in our child’s diagnosis; we merely claim to be an expert in our child.

However, as I progressed through the new documentation, I started to feel a tad unsure.  It sort of feels as if “this is the goal” but there is no detail on what steps will need to be taken to reach that goal, nor does it feel as if there is any real understanding of the huge culture (and operational) changes the LA & PCT staff and families are facing.

2.3 Parent Partnership Services

“These services should be available to all parents of children and young people with SEN”.  Now, before any PPS staff reading this start shouting at their PC or phone, I happen to be a fan of Parent Partnership Services, I think they offer a great deal of support to families.  However, in several areas the PPS have seen huge cuts.  In Kent, we lost almost 50% of our service last year (while hearing rumours of increases in the tribunal staff – a really inspiring message for parents).

Cuts in a service offering SEN information, advice and support to parents, at a time when the new legislation is raising so many questions and concerns for families, is just nonsensical (and perhaps even disrespectful to the families who need this support).  How will PPS be able to ensure their services are available to ALL parents of children and young people with SEN with a reduced workforce?

In some areas, the PPS currently offer the Disagreement Resolution Service but the new COP states clearly, with regard to this service, that local authorities “should ensure that the service is impartial and it must be independent of the LA”.  Not all PPS are independent, even if , in theory, they operate at arms-length.  This is not a criticism of PPS, but a criticism of LA officers who just cannot understand that in order for a PPS to be truly effective and deliver the service that families need, they need to let go!  However, this  comes down to Politics and Personalities instead of achieving the outcomes for children, young people and their families

2.4 Parent Carer Forums:

“Local authorities and other service providers should work in partnership with parent carer forums”.  This is where “should” and not “must” comes in to play.  The COP says effective parent participation happens when the engagement of parent-carers is valued, planned and resourced – but doesn’t clarify how this should happen.   It states in 2.4 that PCFs should be involved in the preparation and review of the Local Offer but in section 4. The Local Offer, there is no mention of the forums, nor are they mentioned in the regulations regarding the local offer.   There is the “must involve parents, children and young people” line, but this will allow the LA to cherry-pick the parents who they know and trust not to challenge them and that won’t help some families.

5.1 Improving outcomes for all

“All children and young people SHOULD have an appropriate education” not MUST have.  “All education settings SHOULD have high aspirations for all children and young people” not MUST have.  It would be nice to see the bar raised slightly here.  However, I fear this will not be the case when you see in 5.8 Best Endeavours that educational settings must use “their best endeavours” to make the special educational provision called for”.

“Using their ‘best endeavours’ means that within the resources available to them these bodies must do their best to meet a child or young person’s SEN”

Seriously?  We went from “Support and aspiration: ……. wide-ranging proposals to respond to the frustrations of children and young people, their families and the professionals who work with them” to “do their best”?  Hardly aspirational when one of the main frustrations of children, young people and their families is educational settings not making the special educational provision they or their children need.

5.9 CAMHS

“Some children and young people identified as as having SEN may benefit from referral to special CAMHS for the assessment and treatment of their mental health problems”.  Now this is truly aspirational.  Does the DfE know about the wait lists?  Do they know how many children and young people are turned away as “not meeting the criteria” or because they are assessed as “too severe”?  What about those families?

SNJ7-9The good bits?

The timescales proposed (20 weeks from request of assessment to EHC Plan being provided) are better than the current 26 weeks, as is  the clarity that if a particular service is assessed as being needed (eg from a statutory social care assessment), the provision should be delivered in line with the relevant statutory guidance and should not be delayed until the EHC Plan is complete.

The statement that “the assessment and planning process should be as streamlined as possible” along with “there should be a “tell us once” approach to sharing information” – if any LA can cut down on the number of times a family has to re-tell their story, that will be such a welcome change for families.

“EHC plans should be focused on outcomes (both short term and longer term aspirations)”.  An outcome is not the delivery of support or a service, it is what that support or service is trying to help the child or young person achieve.  So your EHC plan shouldn’t say that as an outcome you will receive Speech and Language Therapy, it should specify what that Speech and Language Therapy should help your child to achieve.

Speech and Language Therapy should be recorded as educational provision unless there are exceptional reasons for not doing so.

There was one thing that stood out for me, as a Lead Trainer for Early Support and that is the omission of the key worker role within the CoP.  Key working is mentioned but only four times and each of those is a reference to something LAs may want to consider.  Having been involved so closely with the Key Working training, it feels very disheartening.  The whole ethos of key working and working in partnership is the very thing that LAs, PCTs and parents need to be using as we move forward.  Having everyone concerned aware of what it means and more importantly, what is looks like in practice is essential to the success of the Children and Families Bill.

Legislation on policies and procedures is about the delivery of the Bill, not an outcome of what the Bill is hoping to achieve.  Let’s hope the final COP is more outcome-focussed.

hands-001As this article is published, Tania & I will be travelling up to meet Mr T.  If anyone thinks that is a daunting thought, then let me also share that I am waving K off  on his first ever school trip away just before I head for the train and that is a much more daunting proposition – as any mum will tell you.

So,  if you’re on the train to Waterloo from Kent on Monday morning, I will be the woman desperately trying to disguise my red-rimmed eyes, probably muttering “he’ll be fine, he’ll have fun” under my breath.

Rough Draft SEN Code of Practice published

SEN Reform imageLate yesterday, the DfE published the “Indicative draft Code of Practice” as a “work in progress” to go with the SEN/D provisions in the Children & families bill, now going through parliament.

The DfE describe the Code of Practice thus:

The SEN Code of Practice is statutory guidance that provides practical advice on how to carry out statutory duties to identify, assess and make provision for children and young people’s SEN as set out in the Children and Families Bill (currently before Parliament).

The Code also sets out how legislation and regulations concerning children and young people with disabilities works alongside this.

The DfE says a subsequent draft for formal consultation will be produced later in 2013. After this, a final draft will undergo Parliamentary scrutiny in time for it to come into force alongside the Children and Families legislation.

This Indicative CoP is a sort of rough draft devised from early pathfinder learning and from the consultation that took place when the earlier versions of the C&F bill were published.

Additionally it published ‘Illustrative Regulations” and an “SEN Evidence Pack” pulling together the information that has informed the Bill.

It just isn’t possible to write an in-depth analysis of an 86 page document and two additional publications here in less than 24 hours. We’ll be bringing you that in the course of the next few weeks.

Debs and I will be busy reading over the weekend, as on Monday, we’ve been invited to meet the Minister, Ed Timpson. I also have a few other great ideas to mention then as well. (I bet he can hardly wait)

So far, I’ve got through more than half the Indicative CoP and so here are some initial points:

References to statutory duties 

The text uses the word MUST to refer to a statutory requirement and SHOULD to refer to guidance which is a non-statutory requirement.

It emphasises the need for a fully engaged Health system through Clinical Commissioning Groups and other health bodies.

Clinical Commissioning Groups (CCGs) and, where responsible for children and young people with SEN, the NHS Commissioning Board, will be full partners in the new arrangements for securing the provision to meet these needs.

This is obviously a great idea, but, judging from what I’m reading in the press about the difficulties CCGs are facing before they’ve even fully launched, one can’t help but feel…uneasy at best.

Parental Involvement

Parents/carers figure heavily in the document, particularly in relation to helping for develop services at a strategic level and on a family level about schools fully involving parents when it comes to how their child will be helped.

Some teachers and indeed, many parents, will find this quite difficult for many reasons and this is why culture change on both sides is vital.

The CoP document talks about Parent-Carer forums and the support and remuneration they need to be fully engaged, although it does not detail what this should be.

Schools and colleges need to ensure that they fully engage parents and young people with SEN when drawing up policies that affect them. Pupil forums should always ensure that there is representation from pupils with SEN. Schools and colleges should also take steps to ensure that parents and young people are actively supported in contributing to assessment, planning and review processes.

The knowledge and understanding that parents have about their child is key information that can help teachers and others to meet their child’s needs. Enabling parents to share their knowledge and engage in positive discussion instils confidence that their contribution is valued and acknowledged.

2.2: Person-centred planning 

A key approach that ensures that parents and carers, children and young people are actively placed at the heart of the system is person centred planning. A person centred approach to planning means that planning should start with the individual (not with services), and take account of their wishes and aspirations, and the support they need to be included and involved in their community. It aims to empower parents, children and young people so that they have more control over assessment and decision-making processes. It enables continual listening and learning, focusing on what is important to someone now and in the future, and acting on this in partnership with their family and their friends.

The integrated arrangements for commissioning services for children and young people with SEN must promote the involvement of children and young people, and their parents, carers and representatives in decisions which relate to their care, and in the development and review of a local offer of services, derived from commissioning plans which reflect the strategic participation of local young people and their families. CCGs will want to engage with Healthwatch organisations, patient representative groups, Parent-Carer forums and other local voluntary organisations and community groups to do this.

Really, will they? As far as I can see, health/patient/parent engagement is at a very nascent stage and in many areas, embryonic or not even a twinkle in the eye.

Let’s be hopeful though. If it’s mandated, they’ll have to at least make an effort. Won’t they?

3.2 Keeping provision under review 

Joint commissioning is an on-going process and local authorities and their partner CCGs must keep the arrangements under review.  Local authorities also have a duty to keep under review the special educational provision and social care provision in their areas for children and young people who have SEN .

This will be a full time job for someone. In Surrey, an SEN Quality Assurance officer has been appointed already and so presumably this will be part of the role’s remit.

Two new Health Liaison Posts?

The document talks “Designated Medical Officer for SEN”.  This person might, apparently, be an employee of an organisation such as a CCG or NHS Trust. They will have responsibility for co-ordinating the role of the health body in statutory assessment and MUST work strategically across health, social care and local government.

They must… have good relations with local commissioners who are partners in the joint arrangements for SEN, working to ensure effectiveness in co-operation, and encouraging and supporting the optimum use of flexibilities for joint working (e.g. through partnership arrangements and pooled budgets).

They must provide a means for the local authority to access expert medical advice – for example, on whether or not a child can attend school, or on medical evidence provided in support of a school application – but may also be required to provide or facilitate access to, advice or support for the health community on SEN, particularly when health services are preparing reports on children. Whilst the advice and support may be provided by a number of health and care professionals as appropriate, the designated medical officer must be an identified, qualified and registered medical practitioner, with the appropriate training and/or experience to exercise this role in relation to children and young people with SEN.

The search had better get underway in LAs and CCGs across the land if they’re to stand a hope of finding such a person and training them in the ways of the different authorities they’re supposed to work across.

Social Care Services Liaison person

Another role is a similar function within social care. Social care teams have a range of duties and responsibilities towards children and young people with SEN.

Social care departments may find it useful to designate an officer or officers to support their social care teams in undertaking these duties and to act as the central point of reference for the local authority’s SEN teams on matters related to social care.

Although ‘may find it useful’ may be taken as meaning, sweep it under the carpet, there’s no money in the pot.

Section 4: Local Offer

There is a long section on the Local Offer of services and the document underlines the point that a “Local Offer’ should not be simply a list of existing services but should be used to improve the local offering for children with SEN/D.

The accompanying Regulations document is aimed at providing a common framework for the local offer. They specify the requirements that all local authorities must meet in developing, publishing and reviewing their local offer:

  • The information to be included

  • How the local offer is to be published

  • Who is to be consulted about the local offer

  • How children and young people with SEN and parents will be involved in the preparation and review of the local offer

  • The publication of comments on the local offer and the local authority’s response

There is a lot of information on the proposed Local Offer and SNJ will talk in more details about this in another post but enough to say at this stage that a ‘common framework’ is still not a ‘minimum standard’

5.6 Additional SEN Support

The big question has been what will replace the School Action & School Action + levels of SEN that are being abolished along with the statement.

The answer is here and it’s called  Additional SEN Support

But, to me, it all seems to depend on:

  1. The strength of the school’s SENCO
  2. The training of staff.

It’s fine to say, as the document does, that all teachers should be teachers of children with special educational needs, but we all know that mainstream teachers are trained to be mainstream teachers and a HUGE programme of extra training is going to be needed if there are not structured levels such as exists at the moment.

The document talks about all the tasks that a SENCO should be carrying out, but when my boys were in mainstream, the SENCO (who was great) was also a year head, class teacher, head of PE and Deputy Head.

In my personal opinion, a SENCO should be just that. A SENCO whose sole duty it is to identify, organise, monitor and review the progress of children with an SEN. They should be listening to those children and, where appropriate, organising nurture groups to support those whose support needs may look like a SEN but may, in fact, stem from an unmet emotional or social need.

Additionally, they should be monitoring the quality of SEN provision from the school’s teachers and be liaising regularly with parents (and it does say that in this document).

It’s a full time job all by itself. And they should be part of the school’s senior management team.

Before providing a child or young person with the Additional SEN Support, a rigorous assessment of SEN should be undertaken by the institution using all available evidence/data sources, such as attainment and historical data, the child or young person’s development in comparison to their peers, information from parents and, if relevant, advice from external support services.

How will this be funded? It will be 1. “agreed locally” and be from “the delegated schools budget”, but early on in the select committees they were talking about clawing back the delegated budget. So what’s it to be?

That’s it for now, we’ll have more next week, when we’ve had time to read it in detail.

You can find the DfE main document page here

You can find the Indicative draft Code of Practice here

You can find the Illustrative Regulations draft here

Please do add your opinions in the comments below or on our SNJ LinkedIn group

Government acts on calls for SEN ‘duty’ for health provision in reforms

senreform3The surprising and extremely welcome news today from the Department for Education (DfE) is that there will, after all, be a legal duty on health providers to deliver the provision detailed in the health part of the Education, Health and Care Plan that’s currently being developed under the SEN reforms.

Clinical Commissioning Groups are GP groups who, under the new health changes, will plan local health services and who will be called on to organise the health requirements of an EHCP, including specialist services such as physiotherapy, and speech and language therapy.

Since the first draft legislation was published for the Children and Families Bill, parents, charities, SEN legal experts and local authorities themselves have been expressing concern that there was no duty on health to provide the services in the EHCPs. There was only a duty to “jointly commission” – the ‘abracadabra approach’ – which everyone knew was never going to be enough.

The government has bowed to this weight of expert opinion and today, in a press statement, the SEN Minister, Edward Timpson said,

“We are putting health at the centre of our reforms in bringing in this legal duty. It is a significant step forward for children and young adults with special educational needs, and I know that many parents will welcome it.

The duty will mean that parents, and children and young adults with complex special educational needs, will get the health services that are right for them.”

Christine Lenehan, Director of the Council for Disabled Children said,

“Many children and young adults with special educational needs depend on health services. I am really pleased that their needs are being taken seriously. This legal duty should help to improve their lives.”

However, Health Minister Dr Dan Poulter said:

“We are determined that children and young people should be put at the heart of the new health and social care system. That is why we and many other organisations with the power to make a difference recently pledged to do everything possible to improve children’s health. This is an example of that pledge becoming a reality.”

disability sDr Poulter is the only one who does not make the specification “with special educational needs”. He instead refers to the recent pledge “Better Health Outcomes for Children and Young People

A quarter of all children with disability do NOT have special educational needs but do have significant health needs. They will not be covered under this announcement under the current way the Children and Families bill is worded.

Views on health from the House of Commons Children & families Bill Committee

In today’s HOC Children & Families Bill committee hearing, Srabani Sen, chief executive of Contact A Family, said that including disabled children has the potential to cost less to provide provision because it will be more coordinated and simplified. She said that this is where working with parent-carer forums is beneficial because by involving parents at a strategic level designing services you end up with better targetted services.

In her evidence, IPSEA chief executive, Jane McConnell acknowledged the work that had gone into bringing about a duty on health as it had been previously said it wouldn’t be possible. However, she went on to say that that although now it seemed there would be an Education & Health plan, if put under scrutiy by the Trades Description Act, the proposed EHCP would fail because there is still not a duty on social care.

Mrs McConnell said that this should not be a big step as social care is administered from within the local authority, so it should not be as big a challenge to achieve. If there is, she said, a single entrance into the plan then there should be a a single path to redress.

Mrs McConnell explained that she had been told that the current Tribunal already has the expertise to oversee all three strands of a plan in a dispute over provision so it should be given the power to do just that. Otherwise, there would be a reliance on parents to go to three different points for redress, which, if it is a single plan, does not make sense.

So, a huge step forward, acknowledged on all sides but:

1. Still no duty on social care

2. Still no inclusion of children with disabilities who do not have special educational needs.

What do you think?

Read about today’s other developments in SEN reform – Pathfinder update and champions named, as well as more views from the HOC Children & Families Bill committee

SEN reform progress report: ‘pathfinder champions’ chosen

senreform4It’s been a bumper day of announcements and happenings surrounding SEN reform.

First of all, came the publication of a list of local authority groups who have been appointed “pathfinder champions” as they plan to implement the reform to special needs provision in England.

At the same time, a joint report on progress across the pathfinder programme, was published, including headline results from a survey of 65 families with completed education health and care plans. The report is available for download from the associated resources section of this page.

But, quite unexpectedly, the DfE announced a much called for duty on clinical commissioning groups (GPs who plan local health services) to secure any health provision required in the upcoming education, health and care plans for children and young adults up to 25.

Hard on the heels came the House of Commons Children’s & Families Bill committee meeting with a stellar cast of speakers that anyone knowledgeable about the SEN world will be familiar with.

Wow! This is too much information for one post, so Debs and I have prepared TWO posts, one about the new duty and one about the first two points.

Read the “New Duty on Health” post here. (The link will be repeated at the end of this post)

Progress Report & HOC Committee

The progress report and headline survey results is a largely upbeat document about, surprise surprise, progress made. It does seem that, as you would expect, the smaller, more compact authorities are further along in some areas where reorganising services is a more straightforward.

The report, while interesting and informative, does rather over-focus on the positive aspects of various pathfinders and while this is to be expected, highlighting particular achievements, it would be useful to see what isn’t working quite so well and where some of the larger challenges such as the scale of work needed to provide the Local Offer and its necessary IT framework mentioned.

It was, however, gratifying that they mention the parent-carer involvement of the SE7 because, certainly in Surrey and Kent, we do feel this is of particular note. You can read the document in full here

In fact during the House of Commons Children’s & families Bill committee hearing in Westminster today, Christine Lenehan of the Council for Disabled Children noted that, as she visited the various pathfinders, she found that some of most effective ones are the not those with the most plans but those that have concentrated on building climate for culture change to happen.

This, Mrs Lenehan emphasised, will be essential otherwise people will just be focusing on scaling up the pathfinders rather than looking at how you make an entire system change and so that it helps individuals in the system.

Mrs Lenehan said that true success was working with empowered parents, empowered young people and being able to bring creativity to some systems that have struggled to be creative, because there are far too many professionals who do what they do because it’s the way they have always done things. She noted that in her experience some professionals happily seemed to admit that their jobs would be far easier without the interference of parents!

Brian Lamb, the author of The Lamb Inquiry in 2009 and who spearheads Achievement for All said during the select committee that, “Essentially the more you involve parents both at school level and the strategic level, the better the outcomes you get.”

He welcomed the concept of the Local Offer of services for SEN/D in terms of what the government has painted as the picture around it, rather than the language that now exists in the actual bill.

Pathfinder champions named

From April 2013, the ‘pathfinder champions’ will begin to support councils who local authorities across England who are not involved in the pathfinder as they prepare to roll out the reforms.

The DfE says that the champions were chosen based on a mix of skills, experience and regional factors. Each region will have its own pathfinder champion but in some areas, the role will be carried out by a partnership of pathfinder local authority areas.

The pathfinders are:

London Bromley & Bexley
South East SE7 (consortium of seven LAs) and Southampton
South West Wiltshire
North East Hartlepool
East Midlands Leicester City
East of England Hertfordshire
West Midlands Solihull
Yorkshire & Humber North Yorkshire & Calderdale
North West Greater Manchester Group (Wigan, Trafford and Manchester)

The SE7 consortium consists of Surrey, Kent, West Sussex, East Sussex, Hampshire, Medway and Brighton & Hove. Obviously with Surrey and Kent being our own areas, we are both very pleased that the SE7 has been designated.

The champions cover a broad range of authority types. In some city-based authorities, it is a very different system where, for example there may only be one new health Clinical Commissioning Group (CCG) whereas for example in Surrey there are 5.5 (half of the .5 is in Hampshire) and so coordinating provision will be much more complicated. In addition, in Surrey the SEN department is divided into are four geographic sub-quadrants as it is such a big county and I’m sure this isn’t the only LA that will face such complications.

The work of the pathfinder champions will be informed by a set of ‘principles of emerging practice’. There will be an updated version of this document on the pathfinder website from the end of March. Translated, ‘principles of emerging practice’ are ways that those involved with the reforms have found to be the most effective and practical steps to implement the reforms.

Two further SQW evaluation reports will be published at the end of May and September. The first of these will include further progress made, feedback from 10 case study areas and a final update about the SEN Direct Payments Pilot Programme.

Read the post on SNJ about the new duty to provide health provisions in an EHCP here with responses on it from the SEN Select Committee hearing

You can watch the replay of the HOC C&F committee from 5th March 2013 here

Not: As we publish, the committee is still going on, but for our purposes, most of what we needed to hear has been said. If anything else interesting is said after 5pm, we’ll update.

DfE publishes an easy-to-read version of Children and Families Bill

bill-YPversionThe Department for Education has published an easy to read version of the children & families bill designed especially for young people.

The guide uses a simplified layout and language which, as the changes are supposed to cover young people with SEN and disabilities up to the age of 25, is a very good idea.

The actual bill contains lots of clauses and sub-clauses and referrals to clauses stated a few paragraphs previously and so even if the language within it isn’t too difficult, you can get a headache just working out which bit each paragraph is referring to.

I actually have a sneaky feeling lots of adults will be reading this version as well – let’s face it, unless you have a lot of time to pore over it, something that lays out the changes in basic terms is of great benefit.

It also means that adults working with young people who want to understand what’s in the bill can read it along with them without having to find ways to interpret a complicated text.

You can find the DfE webpage that has the download link here

If you’re feeling up for a bit (lot) more of a challenge, read the bill in full here.

Rare Disease Day: My son has Retinopathy of Prematurity

facebook-profileToday, 28th February is Rare Disease Day. It’s an awareness raising day for the millions of people around the world who are affected by rare conditions. Most suffer from lack of investment in research and drug development because there simply aren’t enough people diagnosed to make it a profitable enterprise for pharmaceutical companies.

Today on Special Needs Jungle is the third of our series of posts about rare diseases as our contribution to raising awareness. You can find links to the others at the end of Deb’s moving article about her beautiful son J, who has a rare eye condition that means he cannot see.

Debs writes:

rosie and jamie 005

My twins were born three months early.  After an emergency arrival into the world, R, my daughter “just got on with it” (as the NICU nurse described it).  However, her brother, J, was not so keen to be here early (he still doesn’t like early starts) and needed more intervention.
As a result of their prematurity, they both developed Retinopathy of Prematurity (ROP).  This is the abnormal development of blood vessels in the retina of the eye and the condition has five stages.  My daughter was diagnosed with borderline stage 1/2.  My son was initially diagnosed with Stage 3 but this quickly developed to  stage 5, which in layman’s terms means his retinas have detached.  He has no vision or light perception.

ROP develops in 16% of all premature births (with this rising to 65% in those with a birth weight < 1250g) however, severe ROP (stage 4 or 5) is very uncommon – less than 500 children per year.

I still vividly remember the night we received the diagnosis.  We were told this was a routine eye examination for premature births (with very little other detail) but as soon as the ophthalmologist was examining my son, I knew by his reaction that something wasn’t quite right.  To check for this condition, the baby has to have their eyes pinned open and I remember just listening to my son cry.

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Children and Families Bill – the missing pieces

senreform2Earlier this month, we shared our Initial Views on the Children and Families Bill.  Since then, we have had chance to look at the Bill in more detail and wanted to share our views and more importantly to discuss “the missing pieces”.

As parents, we know the current system and its failings far too well so we welcomed the introduction of the Green Paper and the excitement of being involved in Pathfinders.  However, the Bill that we have been offered isn’t quite all that we were hoping for.

The reforms offered, “a new approach to special educational needs and disability that makes wide-ranging proposals to respond to the frustrations of children and young people, their families and the professionals who work with them”  and a vision of reforms to, ” improve outcomes for children and young people who are disabled or have SEN, minimise the adversarial nature of the system for families and maximise value for money”.

What we’ve been given in the Children and Families Bill has not quite lived up to the hype.

The good bits:

  • Children, young people and their families are to be true participants in all decisions affecting them
  • A duty for health, social care and education to commission jointly (which theoretically means they will actually speak to each other)
  • Education Health and Care Plans (EHCP) to be available up to the age of 25
  • Academies and Free Schools to have the same SEN requirements as maintained schools
  • Independent Special Schools will be included on the list of schools that parents can request as a placement (although the proviso about ‘efficient use of resources’ is still in there)

What’s missing?

  • Disabled children and young people without SEN.  Despite the Green Paper offering improved outcomes for children and young people who are disabled or have SEN, the Children and Families Bill is only offering the new EHCPs to those with SEN.  This decision shows a real lack of understanding from the DfE about the difficulties that children and young people with “just” a disability (and no SEN) face.  The Children and Families Bill suggests that the needs of these group will be met by the Local Offer.
  • Local Offer – Minimum Standards.  Currently, the DfE are suggesting a “common framework” for the Local Offer.  This could possibly (and will most probably) result in a postcode lottery.  As the Local Offer is being offered as the alternative to EHCPs, there needs to be much clearer legal obligation of minimum standards for Local Authorities.  “Minimum” indicates that something is the very least which could or should happen. “Framework” indicates a skeletal structure designed to support something.
  • There does not appear to be, within the Bill, a “duty to provide” the contents of the Local Offer, just to publish it and that a local authority “may” wish to review it “from time to time”. All a little bit wooly.
  • School Action/School Action +.  There is no mention within the Bill as to how the needs of children currently on SA/SA+ will be met.  Again, if the Local Offer is to be the alternative then this  needs to be much more prescriptive to Local Authorities. The DfE says the replacement structure for the present lower categories of SEN will be defined in the new Code of Practice which is now starting to be drawn up – interestingly by a different team of officials to the one that drafted the bill. Hmmm.
  • No duty on health or social care to provide the services within the EHCP – just an obligation to jointly commission with the local authority. There needs to be an realisation in government that the words “Joint Commissioning” aren’t a new magic spell – a sort of Abracadabra for SEN. Optimistically repeating the “Joint Commissioning” mantra doesn’t mean it’s, as if by magic, just going to happen.
  • No specified time frames from when you apply for an EHCP assessment to when you receive an assessment and more importantly, a EHCP.  Currently, it takes 26 weeks from applying for an Assessment of SEN to actually receiving a Statement of SEN.  This, as a parent, can seem like a lifetime (especially if you only hear about the need for a statement a short time before your child attends school – and yes, this is more common than people like to admit). However, you can see a light at the end of the tunnel with a deadline of 26 weeks.  The new Bill does not provide any defined time scales and this is essential for families. It does say that the regulations may make provision for this – but “may” should really be replaced with “must” as this is a key point.
  • Key worker – throughout the Green Paper, there was mention of a key worker for families.  One person to go to, who would help the families through the jungle but there is no mention of this within the Bill.  This is one of those key features that really excited a lot of families.  The ability to have one person; one person who would repeat your story for you and point you in the right direction to access the support your family needs. This is one aspect of the initial aspirational Green Paper that needs to be clarified – both for families and practitioners. Was this just an absent-minded omission from the Bill or has the DfE decided to quietly sweep this innovative and important role under the carpet? Note to DfE: if it’s the former, someone needs a slapped wrist, if it’s the latter, you’ve been rumbled so put it back in, pronto. Or is this another point for the “regulations”?
  • Time – the current Bill is scheduled for Royal Assent in Spring 2014 (i.e. passed into law) with September 2014 being proposed for when this will come into practice.  How will Local Authorities and PCTs manage to train all the necessary staff in this short time (especially with a 6/7 week school holiday in that time)? Ask any parent and they will say the same: they would far rather wait for another six months so that LAs can get all their recruiting and training in place (not to mention their funding arrangements) than inherit a chaotic mess where no one knows what’s going on, where the money is coming from and half the staff still hanging on to the old adversarial ethos.

While we’re on the subject of culture change, a DfE official did mention to us that he thought re-training to effect culture change should be starting now. I would be really interested to know what funding or provisions or courses there are in existence or planned, to begin this process – which is arguably one of the most important parts of the entire process. Indeed, it might be a little controversial to suggest, but if a root and branch programme of culture change within LA SEN departments had been put into practice to start with, there may have been less need to overhaul the entire system.

The new Children and Families Bill does have the potential to provide children and families with, “A new approach to special educational needs and disability” and to, ” improve outcomes for children and young people who are disabled or have SEN, minimise the adversarial nature of the system for families and maximise value for money” but not without some more thought and considerable tweaking.

Tania & Debs

Rare Disease Day: Son2 has Ehlers Danlos Syndrome

facebook-profileTania writes:

As you will know if you are a regular reader, Son2 has Asperger Syndrome. He also has ADD (no H in there, he doesn’t move much!)

Last year, while researching information for the forthcoming Rare Disease Day for work, I came across a case study on the Rare Disease UK site about a young woman who had struggled with a group of different syndromes, including hypermobility, Raynaud’s Syndrome and POTS (Postural Orthostatic Tachycardia Syndrome).

It was a light bulb moment…

son2eds2Son2 was born with an unstable ‘clicky’ hip that took a long time to heal and as a toddler, he had suffered with Reflex Anoxic Seizures, a frightening condition where shock or pain can cause the heart and breathing to suddenly stop. The sufferer then has a seizure-like episode, with eyes rolling, the skin going grey and then falling into unconsciousness.

In fact, as they are not breathing and their heart is not beating, they are clinically dead. After some seconds, thank God, adrenalin always kicks in, restarting their heart and breathing and they come round.

RAS is caused by an inappropriate response of the vagus nerve triggering a cardiac event. It is a rare heart arrhythmia. The brilliant charity that helps people with RAS and other blackout conditions is called STARS and I was involved with helping them for a long time.

Son2 would have these episodes up to three times a day, usually triggered by anxiety or frustration. By the time he started school, the attacks had diminished into ‘near misses’, where an attack would start but we were usually able to get him to a horizontal position to help minimise the effects and equalise his blood pressure.

It was, as you can imagine, a very distressing time, but as with everything we have encountered as parents, we made it through, just taking every day as it came. Of course we knew nothing, then, of what was to come in the years ahead with both sons’ Asperger’s.

As Son2 grew older, his Raynaud’s would cause his lips to turn blue when he got cold and he began to suffer from joint pain and dizziness. We did not connect the different problems he experienced into one larger whole – why would we, when they were so different? We were worried that his dizzy spells were signalling a return of the RAS, which, if it goes away in childhood, can recur at puberty.

But when I read the case study, everything fell into place. The young woman had eventually been diagnosed with Ehlers Danlos Syndrome. I was convinced this is what Son2 had, so I decided to do some more research and follow it up with my doctor.

My research revealed that EDS has six different types of varying severity and the difficulties experienced within each sub-type can also affect people in different ways. EDS can cause multiple dislocations, joint pain, fatigue, easy bruising and stretchy, fragile skin among many other symptoms.

RareConnectAs my work involves a forum run by RareConnect, and I knew they had an EDS forum, I contacted my colleague there, Rob, who helpfully gave me some numbers and links for EDS information.

As a result, I called up Lara from EDS Support UK who gave me the name of a specialist. I went to my GP for a referral, worried she might think I was an over-protective mother. Luckily, she knows me and trusted my instincts. Although she was no expert in EDS, when I gave her the information I had and the name of the specialist, she was happy to refer us.

Soon after, we went to see Professor Rodney Grahame, who is a world expert in EDS in London. He carried out measurements and a physical examination of Son2 and listened closely to his medical history before agreeing that he did, indeed, have EDS Type III.

edsSon2  already had OT at school and now also has a physiotherapist, we have had a special programme designed for him at our gym (he is 13) and he is waiting to see another specialist paediatrician regarding a further potential issue that Professor Grahame noticed.

We saw the Prof. privately for speed, although he also sees patients on the NHS. All Son2’s other treatments are NHS and so we are on a waiting list.  For the physio, the letter instructed us to wait six weeks from the date of the letter before we could ring up for an appointment!

The EDS RareConnect forum that I mentioned, which is run by EURORDIS, the European Rare Diseases Organisation, has lots of information, research articles and the chance to connect with others. It’s also multi-lingual.

If anything I have described here rings a bell, do check out the links in the article to find out more. It’s quite amazing to me that because of work I was doing to help others, I ended up discovering something about my own son that will make his life better (even potentially longer) and my great thanks go to Rob Pleticha at RareConnect and Lara Bloom at EDS UK for helping me on my way.

Rare Disease Day is on February 28th. You can find the Facebook page here

If your child has been diagnosed with a rare condition, the National Children’s Bureau has an information support sheet. You can download it as a PDF here

Top Tips for Speech and Language Therapy – Part One

As is often the case, I come across great resources and services for children with special needs on Twitter. I then cheekily ask them if they’d like to contribute a guest article for Special Needs Jungle and I’m delighted to say, today and tomorrow, we have a two-part article from two Speech and Language Therapists who run SpeechBlogUK.

Helen & Elizabeth have written their top tips when using Speech and Language Therapy services.

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Hi.  We’re Helen and Elizabeth from www.speechbloguk.wordpress.com .

SpeechblogWe’re two speech and language therapists living and working in the south-east of England.  We both have experience of being employed by the NHS and working independently.  We’ve recently started our own blog, and we were thrilled when Tania contacted us about writing a guest post for Special Needs Jungle.  Below is some advice about accessing SLT and making the most of your appointments.

Many children have speech and language problems at some point and this number seems to be rising.  If you have concerns about your child’s development, the most sensible thing to do is seek out a referral to a speech and language therapist.  However, as many of you may be aware, sometimes this can be harder than it sounds.

There are a number of places you can get good, sensible information from, both on development and ideas to help at home.

  • Ican: Ican are the children’s communication charity.  They have some brilliant resources and advice.  They also offer a range of services and support.
  • Afasic Again offer support and advice to parents and have a range of services available.
  • Talking point Has some lovely information and developmental checks and information
  • Mommy Speech Therapy: This is an American blog and has some great advice sheets and ideas

WARNING: be a little careful when searching the Internet. As with all things there is also some misleading information out there.  Try to go to known associations and organisations.

Referrals

pigtail_girlThere are a number of ways to get referred to most NHS speech therapy departments.  There may be local variations but generally:-
– Preschoolers can be referred by a GP, nursery, paediatrician, health visitor OR parents.
– School aged referrals can become a little more complicated. Normally referrals have to come from schools or paediatricians and fewer trusts will accept parental referrals (although it’s always worth trying!). You may also find that your child may need to be referred to other education based services first, before they can be referred on to speech therapy.

You can also access independent speech therapy; however, you have to pay! A few health insurance companies will pay for independent initial assessment, but I have yet to find one that will fund ongoing therapy for developmental issues.

In some circumstances, parents can get help towards the fees from Cerebra.  To ensure the therapist you find is appropriately qualified and insured, use the ASLTIP website www.helpwithtalking.com .  This is the association for independent therapists and, to be a member, you have to prove that you are qualified and keep all memberships/ insurances and skills up to date.  Most independent therapists will happily talk about your concerns over the phone and some offer a free brief consultation – so it’s worth ringing around. You are paying so you want to find someone you can work with.

WARNING. Some schools say they have a speech therapist and they don’t. They may have a TA with some training or some of the local authority education workers who support language, but few mainstream schools have a qualified speech therapist.

REMEMBER: you know your child best.  If you have concerns you should follow up on them, even if it’s just reading up a little.  If you are finding it hard to get your child referred, keep going!

Read the second part of this article on Special Needs Jungle tomorrow.

Ten things I wish, with hindsight, I had known

Debs writes….

As we go through the Special Needs Jungle, we pick up tips, we gain confidence and we often think “I wish I’d known …….. at the beginning”

I wanted to share with you the ten things I wish I had known (or had the confidence to believe) when we entered the Jungle.

  1. When you sit in the room with the practitioners, you are an expert too. You may not be an expert in your child’s diagnosis (yet); you may not be an expert in what services are available for your child but you are an expert in your child. You know your child better than any practitioner. So at your next appointment think “I know my child and I bring this expertise to the meeting.”
  2. 1401629_dancing_girlsIt’s okay to take a friend to an appointment. Not just for support but also to take notes. Someone who, after the meeting, can help you to remember exactly what was said. I have walked out of so many appointments and thought “what was it he said about…….”. They can also be the person who can take your child out of the room when you want to have a discussion you don’t necessarily want your child to hear. Taking a friend is not a sign of weakness or even seen as confrontational, it’s just support when you really need it. Often our friends without children with SEN wonder what they can do to help us – let them help.
  3. It’s okay to feel sorry for yourself sometimes. I really tried to bottle those feelings up and pretend that I was okay, that I was coping when inside I wanted to shout “why me, what did I do”. I would sometimes avoid my friends who didn’t have children with a diagnosis because I wanted to ask “what did you do differently, why do you not have to deal with the same things I deal with”and then I felt guilty for thinking this. But guess what? It’s normal. So many parents of children with SEN go through this, especially at the beginning when you are learning how difficult this system is, this system you are involuntarily dealing with. Don’t bottle it up. When I have a day like this (and I still occasionally do), I stay indoors, I turn off my phone and I cry. Then I get myself back up off the floor and I have stopped feeling guilty for being human.
  4. 1321733_broken_heartSometimes it is going to hurt. When you get a diagnosis, even if it is a diagnosis you have been fighting for because you know the label may help to get the support, it can still hurt. Just because you are expecting it, don’t think it will hurt less. It may not. When I got the diagnosis of hydrocephalus, it was unexpected and it hurt. However, when we went for the diagnosis of ASD, I was expecting it, I knew it was coming and I knew it would help but it still didn’t hurt less when it was confirmed. I can still remember sitting in the car on the return journey and feeling like my world had been turned upside down. I can still remember people saying “what are you upset about, you knew they were going to say this” but do you know what, even though I find this hard to admit, I wanted to be wrong. I wanted them to laugh at me and say “you silly neurotic woman, why would you think he was autistic”. But they didn’t and it really hurt. Then, years after the diagnosis, you will have reality checks and they may hurt. This morning I suddenly had this realisation that I won’t be able to just scribble a note for my son when he’s older. If I have to nip to the shop and maybe he’s in bed, I won’t be able to stick a post-it note to the door saying “nipped to the shop, back in 5”. Yes, I will be able to braille him a note but where do I leave it? I know we will come up with a solution but just this morning, I had a reality check and it hurt.
  5. It is stressful. When you are pregnant with your first child, everyone with children will take great delight in telling you how stressful it is, how this child will change your lives and you may think you understand what they mean – until your child arrives. It’s the same with the system, I can tell you it will be stressful but until you are going through it, it is difficult to understand exactly what I mean. At Kent PEPs last year, we asked parents how they dealt with stress and also, more importantly, how they knew they were stressed. We produced a leaflet for parents with advice and tips from parents in the same position. It’s our most popular download.
  6. Don’t get to crisis point before asking for help. In Kent, we have to go via our Disabled Children’s team to get direct payments and so many parents, who would benefit immensely from this service, refuse to access it because it means involving a social worker. We asked parents recently what would put them off and the main response was “fear of admitting you were finding it hard to cope”. Please don’t wait until you can’t cope before you ask for help. Admitting you are finding it hard is a sign of strength, not weakness.
  7. c&fbillimageI wish I had known more about the law or that there were statutory bodies and charities set up to help parents of children with SEN law. Several websites (including this one) and charities are there to give you advice on SEN law and your local Parent Partnership Service is there to give advice on SEN educational law. There is a huge list of Acts, Conventions and guidance out there to help protect our children but often, you only find out about them when you have already been through months of stress. Even if you do not have the time or ability to read and understand The Equality Act or the new Children and Families Bill, there are others that do. Try to think ahead and find out where you can get help before you need it. .
  8. You will get turned down. I remember the first time I was turned down after applying for support for my eldest son. I had presumed that common sense would prevail and he would get help because he needed it. When I was turned down, I was really shocked. I took it personally, I thought perhaps I hadn’t made it clear, perhaps I had offended someone, perhaps it was me they were saying no to. Having three children with SEN, I soon realised that the system can often be a case of “apply, get turned down, appeal”. I eventually stuck an A4 sheet with these words written in red, yellow and green on my fridge as a reminder that this was not my error, it was down to the system.
  9. You will meet some amazing people. I have met people who inspire me, who motivate me to carry on and people who I feel privileged to have in my life. Most of these people live this, they don’t do it for a living (but there are exceptions). A lot of the parents I know who are involved with their local parent carer forums are amazing to me. Some of these parents have found their way of dealing with the stress, they get involved and try to influence change. Not all parents are ready for this or want to be involved but I am so pleased to be part of the group.
  10. super_hero_flyingI am not Superwoman. If I had to choose one thing I had known at the beginning, this would be it. The hours I spent trying to achieve the un-achievable! Superwoman is a fictional character who does not have children – and definitely not children with SEN. Trying to be everything for everyone all the time is not possible. Spending your days thinking “I should have”, “If only I had”, “I wish” is never going to lead to a good place. Neither does comparing yourself to another parent who is perhaps involved with so many different things that they make you feel like a failure. People deal with things differently, some choose to get involved with forums, some choose to set up support groups, some want to go along to a support group and others just want to avoid support groups like the plague. Whatever works for you is the right thing – for you. You can always get involved or step down from involvement at a later date. You have to take time for you, you have to choose your battles and you have to remember there are only 24 hours in a day. Focus on what you have achieved, not just the things you believe you have failed in. Sometimes, getting through the day without breaking down is an achievement. Celebrate it. Getting dressed can be an achievement, as can making it to an appointment on time. Celebrate the achievements, no matter how small you think they may seem to others. You will know what it took for you to achieve it, so say “well done” and feel good about yourself.

What do you wish you had known? These are my ten things, they may not be yours. More importantly, what achievement are you celebrating today?

Children and Families Bill – initial views

Finally, the wait is over and the Children and Families Bill, which includes the SEN reforms, has been published. Debs spent yesterday poring over it and here are her initial views:

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c&fbillimageJust after 10am yesterday, the Children and Families Bill was released and I started to plough through.  Not only did I  have to read this Bill, I  wanted to compare it to the draft Bill published last September, the Select Committee’s pre-scrutiny recommendations from just before Christmas and the numerous responses.

All of this with a child off school with a chest infection and a husband at home who wanted to chat about decorating the bathroom – oh, and no in-house lawyer on hand to help.

The first thing I looked at was whether the Bill strengthened the involvement and rights of the parent and child (or young person)?  Well, you’ll be pleased to know it has.  There is a whole new clause, right at the beginning of Part 3 of the Bill (the part that deals with SEN), which reads:

In exercising a function under this Part in the case of a child or young person, a local authority in England must have regard to the following matters in particular—

(a) the views, wishes and feelings of the child and his or her parent, or the young person;

(b) the importance of the child and his or her parent, or the young person,participating as fully as possible in decisions relating to the exercise of the function concerned;

(c) the importance of the child and his or her parent, or the young person, being provided with the information and support necessary to enable participation in those decisions;

(d) the need to support the child and his or her parent, or the young person, in order to facilitate the development of the child or young person and to help him or her achieve the best possible educational and other outcomes.

As a parent, I am reading this as “Dear  Local Authority, you have to listen to me and my child(ren), and you have to give us the information we need in order for us to have an informed view”.  Now, there are probably 1001 legal-type people shouting at this post and saying the local authority “must have regard to” is not the same as the local authority “must” and yes, I know there is a difference but I am trying to be positive.

Throughout the Bill, clauses have been added or amended to clarify that parents and young people must be involved and their views listened to.  So thank you Mr T, this is a move in the right direction.

Rights & Duties

My second question was to look at whether there was now a duty for health to provide a service.  In the last Bill, there was a lot of criticism that “joint commissioning” was not enough.  In fact the Education Select Committee believed strengthened duties on health services were critical to the success of the legislation

Well, now in the definition of “Special Education Provision” we have:

21 Special educational provision, health care provision and social care provision

(5) Health care provision or social care provision which is made wholly or mainly for the purposes of the education or training of a child or young person is to be treated as special educational provision (instead of health care provision or social care provision).

This doesn’t put a duty on health but the LA do have a duty to secure the special educational provisions.  There is no clarity however, as to which health care provisions this will actually mean and as there is still no duty on health with respect to the provisions within the EHCP, there are no guarantees.

Next, we considered if the new Bill clarified that parents can apply for a EHCP assessment and the answer is yes.

36 Assessment of education, health and care needs

(1)A request for a local authority in England to secure an EHC needs assessment for a child or young person may be made to the authority by the child’s parent, the young person or a person acting on behalf of a school or post-16 institution.

There appears to be no timescales for the LA to respond within the Bill, but we are constantly being told that the “devil will be in the detail” so this, surely, has to be announced in the draft Regulations which are currently being compiled.

So, on to the next question “is mediation still compulsory” (an oxymoron if ever I heard one)?

And the answer is no.  It’s still an option for families who wish to go down this route before Tribunal but no longer compulsory.

What about disabilities?

So, I started to relax a little now but then had a  big reality check.  One huge (or as my son was said “gi-normous”) omission from the new Bill.  Disability.  Or to be more precise, disability without a special educational need.  If your child has a disability and health and social care needs but does not have a special educational need then I’m sorry but you’re not part of the Plan.

Despite several charities protesting and high profile campaigns, it would appear that the Government will not be providing the same opportunities to some of the children who need them the most.

In the DfE’s case for change, it stated “Disabled children and children with SEN tell us that they can feel frustrated by a lack of the right help at school or from other services”.

In the Green Paper, it said “The vision for reform set out in this Green Paper includes wide ranging proposals to improve outcomes for children and young people who are disabled or have SEN” and “This Green Paper is about all the children and young people in this country who are disabled, or identified as having a special educational need

All of the proposals were clearly for disabled children AND children with SEN, not disabled children with SEN.  So, what has happened?  Every Disabled Child Matters has already commented on this and I will be supporting their campaign to give disabled children the same rights as those with SEN.  When they launched the Green Paper, the DfE set out their cart and made us an offer, they clearly said “disabled children and children with SEN”.  We all hoped  that they were really listening to our families and then they changed the rules without explanation.

If you’re interested in what other groups have to say in response to the publication, I’ve listed all I can find here, if you know of others, let us know.

Politics and personalities in the SEN jungle

Like me, my co-contributor, Debs Aspland, grew up in the call-a-spade-a-spade, working class, north-west of England.  Also like me, she has far too much to do trying to juggle work and care for her special needs children to have any time for the politics and game-playing that has so often, in the past, made lives difficult for parents trying to cut their way through the special needs jungle.

In this post, our Debs who, you will remember, is Director of Kent’s parent-carer forum, Kent PEPS, explores the different personalities we meet as parents and individuals in our daily lives and how thinking about this – and your own approach – can help you navigate the system to get the best help for your child.

***

Any change, even a change for the better, is always accompanied by drawbacks and discomforts.

Arnold Bennett

Any change, even a change for the better, is always accompanied by politics and personalities.

Debs Aspland

True co-production with parents is a goal that came out of Aiming High.  The Department for Education allocate a small grant each year to a Parent-Carer Forum within each local authority, with the remit that they work with health, education, social care and other providers to ensure that the services they provide are the services that families want and need.  Fantastic, what a great way forward!

However, the DfE forgot to tell the health, education, social care and other providers that they had to work with the Parent-Carer Forums.

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Ten tips when your child is newly diagnosed with a special need or disability

TanGio-phone_edited-1

He’s not a condition, he’s my boy

You may have suspected, even all but known, but the moment when you finally get a confirmed diagnosis for your child is a watershed.

You may feel numb, distraught, helpless. If you had dreams or expectations for your child’s future, they’re now in tatters. It’s time to start again with a fresh set of hopes.

When your child receives a diagnosis of any special need or condition, it is a very distressing experience that can also feel very isolating, especially if you do not know any other parents in your position. It can also, at the same time, be a relief that you were not imagining these symptoms and that you now have a name for the problem. This is particularly true when the child has a hidden disability such as Asperger Syndrome or ADHD.

But what practical steps do you need to take? Here are ten tips below, please add your own in the comments.

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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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SEN Pre-Legislative Scrutiny report- a précis and my views

The Education Select Committee report on its pre-legislative scrutiny of the SEN draft bill has just been published. The scrutiny entailed two oral sessions in which parents, professionals, service users and charities aired their views on the draft legislation.

The committee also received more than 200 written submissions, and while the report deals with key themes, it states, in bold, “We recommend that the Department for Education examine with close attention the written evidence provided to our inquiry on issues not covered in our report and give careful consideration to the points raised by witnesses in drafting the Bill which is to be presented to Parliament.”

So, lots of Christmas reading for Mr Timpson, the Minister responsible for the legislation and his draftbillofficials, along with a directive that just because it isn’t in the final report, does not mean that it can be shuffled aside.

The report concludes that, “The general thrust of the draft clauses is sound, but the legislation lacks detail, without which a thorough evaluation of the likely success of the Government’s proposals is impossible. The Government intends to provide this detail in regulations and a revised SEN Code of Practice. It is essential that these documents address the concerns raised in the detailed written submissions to our inquiry and that the revised Code of Practice remains a statutory document, subject to consultation and laid before Parliament.”

The last part of this statement is important as, so far, it has not been planned to put the revised CoP through parliamentary scrutiny, something that most people involved in the pathfinders think is vital.

However, crucially and somewhat surprisingly, the report does not recommend a significant delay in finalising legislation by 2014 but sought, “assurances that the findings from the Pathfinders will be drawn upon in detail to inform the final make-up of regulations and the Code of Practice to accompany the legislation.”

To me, these two do not go together. How can you inform the regulations from pathfinder pilots that are not due to end until September 2014 and yet still bring in legislation the same year? Unless of course you introduce the bill in autumn 2014 to be passed by the very end of the year or soon after, thus giving 9 months to put all the new structures, training and recruitment in place that will be needed to move to a new system. Not to mention writing reams of new literature explaining the changes to education, health and care providers and, of course, parents. And no, nine months is not too long, because we’re talking significant cultural and organisational change carried out country-wide. Now there’s an idea!

Edward Timpson giving evidence

Edward Timpson giving evidence

Although the extension to 25 was welcomed, the report, quite rightly, pointed to a lack of engagement with post-19 providers to make this happen. Indeed, it has been acknowledged that making these provisions work with universities who have their own structures, will be extremely difficult.

The committee recommended that the current protections that a statement provides should be preserved, which is the intention in any case. It also stated that, “The scope of entitlement to integrated Education Health and Care provision and assessments should be extended to disabled children, with or without SEN, and also to young people undertaking apprenticeships.”

While the latter part of this statement has already been mentioned by Mr Timpson, the first part, dealing with disabled children without SEN is very welcome.

Parental involvement

Parents & young people giving evidence

Parents & young people giving evidence

For me as a parent, the key paragraph is as follows: “The involvement of parents and young people in the development of Local Offers is critical, and we recommend that the role of parents and young people be reinforced in primary legislation.”

“We therefore recommend that Parent Carer Forums be listed as partners under draft clause 8 (Co-operating generally). (Point 153)

Enshrining a need for involvement from parents and young people in primary legislation means that co-production is here to stay so any professional who thinks we’ll just slink away back into the woodwork, had better come to terms with the fact that that just isn’t going to happen.

Certainly in Surrey, the fact that parents are involved from the start of the pathfinder process means we are increasingly being seen as a vital partner in consultation. For example, in Surrey we have a Disabilities Experts Group as part of a Public Value Review and I and other parents are involved. I hope this will be extended to many other areas as well.

This does, of course, bring with it responsibilities as well as opportunities, something I plan to write about in the future.

Local Offer

A national framework for the local offer is something that many people had wanted but when he spoke at the select committee, Mr Timpson seemed to think he could leave it up to parents to complain that what a neighbouring authority was doing was better than their own, thus putting them into direct conflict with the LA, something we are trying to get away from.

The committee recommended that, “the Pathfinders be used to inform what should constitute minimum standards for Local Offers, particularly to address the provision that will need to be made available in schools to support pupils with low to moderate SEN without EHCPs. We also recommend the establishment of a national framework for Local Offers to ensure consistency, together with accountability measures by which they can be evaluated. (Point 146)

Rights & Redress

This issue has been a major concern for parents and SEN lawyers. The committee felt that joint commissioning between Health and local authorities will not in itself be sufficient to secure improved engagement from Health in assessments of SEN and provision of Health services to children and young people with SEN and disabilities. Despite acknowledged difficulties with the NHS constitution, “duties can and should be imposed on the NHS which do not conflict with it. Regulations could, for instance, commit Health to adhere to timetables for assessments.”

It was also concerned at the lack of a single means of redress/appeal. “The Government seems to be relying on the duty for joint commissioning to reduce the incidence of appeals from parents and young people later on. This is too optimistic and we believe that greater protections for parents and young people in securing the provision described in an EHCP will be needed along with more coherent routes for redress for all aspects of an Education Health and Care Plan. (Point 68)

The lack of duties on Health creates a specific concern about securing services such as therapy services which may either be defined as supporting health or special educational needs. The legislation needs to make specific reference to such services to ensure that local authorities and Health cannot deny responsibility for their provision due to disagreements over which element of the EHCP they underpin. It also needs to be made clear how this provision will be funded, and by whom. (Point 72)”

Additionally,  the report recognised that improving processes for requesting, securing and carrying out assessments of SEN are top priorities for parents of children with SEN. It therefore recommended that, “current protections be reiterated in the new legislation, and that timescales for responding to a request for an assessment, and for conducting an assessment be set out in regulations. It is essential that there is an alignment of assessment timescales between local authorities and Health. Whatever the difficulties, they must be overcome. (Point 84)

There has been much complain about the apparent need for compulsory mediation before an appeal can be heard that was set out in the draft bill. The committee said that mediation should NOT be compulsory when things go wrong, but families must attend a meeting to consider mediation before an appeal is heard. I’m not a lawyer so I’d be interested to find out what they make of this change.

Other issues highlighted

While the report is too long to quote from in full, I’m listing some bullet points of causes for concern that it has picked up on and if you are interested, you can find them in the report yourself in much greater detail

  • The term ‘special educational needs” is recommended to stay the same. (point 37)
  • A clear majority of the evidence concurs with the view of the SE7 Pathfinder—the largest Pathfinder—which is “concerned that in many ways the draft clauses do not go far enough and do not fully reflect the inspirational vision in the Green Paper”. (Section 2 of the report)
  • Timescales: You cannot bring in legislation before the pilots have had sufficient time to run and be evaluated (section 2) SQW who are evaluating the process said in its own report in October that, “although pilots or policy trials may be costly in time and resources and may carry political risks, they should be balanced against greater risk of embedding preventable flaws into a new policy”.
  • Regulations should allow flexibility in the frequency and timing of EHCP reviews. (Point 100)
  • The fact that this reform is taking place at the same time as Health and social care reforms presents a risk
  • The fact that at present, there is no duty on Health or social care to make stated provisions that are contained in an EHCP for children but there will be a duty for adult social care provision in the proposed Care & Support Bill, is a concern. This is because if an EHCP goes up to 25, there will be a crossover with children’s and adult services and as a result a total mess could ensue. (point 19)
  • This is echoed by current changes in school funding arrangements and by delegated funding that has already taken place. The NUT believes any SEN bill should be delayed until September 2015 to allow the current changes to settle. Mr Timpson sent a written explanation to the committee after the second hearing which you can read at point 22.
  • The active involvement of the NHS—in commissioning, delivery and redress —is critical to the success of the legislation. Despite the acknowledged difficulties, in order for this to work, the Government must ensure that the NHS is obliged to participate fully. (Point 36).  This point is key, in my opinion, to making a success of the reforms
  • On Post 19 provision: It is vital that the responsibility, funding and, where appropriate, access to advocacy for these young people is clarified so that all those involved know what they can expect from the new provisions and who is accountable for providing it. If the purpose of the legislation is to extend education as a right to 25, then the Government needs to make that clear and fund that; if not, then that should also be made clear.
  • The report recommends that regulations make clear the necessary skills for individuals undertaking assessments and they should create a presumption that a key worker/lead professional will be appointed unless there are good reasons not to do so. (Point 60)
  • The committee was concerned by the lack of clarity as to how pupils currently receiving support under the School Action and School Action Plus categories will be supported under the new proposals. It said  the Government must make clear at this early stage what is expected of schools in delivering better outcomes for pupils with SEN who are not entitled to an EHCP. (Point 127)
  • The role of SENCos be strengthened and they must be teachers who are qualified to be SENCos
  •  Choice of school: We welcome the extension of the list of schools for which parents can express a preference in an EHCP to include academies and free schools. The case for also including independent special schools and colleges is well made. We recommend that the Government prioritise agreeing definitions so that these schools can be included in order for pupils with SEN to have access to appropriate educational provision. (Point 164)
  • Personal Budgets: The committee didn’t have much to say about these but acknowledged the opposition from the NUT. It simply stated that lessons should be taken from the pathfinders. The SE7 pathfinder has already stated that the current regulations are significantly flawed and it will be essential for future regulations to better crafted based on an understanding of the Pathfinders’ experiences.

The report’s final conclusion was that the general direction of the Government’s reforms of SEN provision was welcomed with some caveats. “Expectations have been raised and it is important that the goodwill expressed towards these proposals is not lost. There are points of detail in the draft legislation which must be addressed before the Bill is presented to Parliament and we believe it is important that lessons from the Pathfinders continue to inform the legislation as it goes through Parliament and the regulations and the Code of Practice thereafter.”

This article is, of course, a précis, coupled with my own observations as a parent of children with special needs who is involved in the pathfinder process. My views are my own and do not necessarily reflect those of Family Voice Surrey, the parent-carer forum for which I am co-chair.

If you would like to read the whole thing yourself, and I recommend that you do if you are affected by the changes, you can find them at http://www.publications.parliament.uk/pa/cm201213/cmselect/cmeduc/631/63103.htm

Pathfinders, politics and parental co-production

Last Friday, our parent-carer forum in Surrey, Family Voice joined with Surrey LA and local voluntary and community services to host an SEN reform pathfinder update.

Surrey is one of 31 Local Authorities that make up the 20 pathfinder areas, with Surrey being part of the largest group, the SE7.

We had a great line-up of guests including Stephen Kingdom from the DfE, SEN barrister Gulshanah Choudhuri and Susie Campbell, the woman who has been responsible for pulling together all Surrey’s different streams of work for the pathfinder trials – a huge job.

This was an important conference and the right time to update parents whose children these reforms will affect. The draft bill was published last September and since then it has been picked over by parliamentarians, local authorities, charities and lawyers.

Ministerial Assurances

Stephen Kingdom, for the DfE, re-stated the Minister in charge, Edward Timpson’s assurances that no rights would be taken away from parents or children and that there was definitely scope in the draft bill for a tightening up of the language to  make that clear. He said they were working with the Department of Health on structures for redress if a stated provision is not made by a health organisation.

On timescales, he said they would be shorter than they are at present and the requirement for mediation would not extend the timescales for appeal. As mentioned on this website last week, Mr Kingdom confirmed that Speech and Language would stay under the remit of education and said that an ECHP must be as clear and specified as statements “should be”.

The Good, Bad & Ugly

Gulshanah Choudhuri

Gulshanah Choudhuri of SEN Barristers, called her presentation “The Good, The Bad and the Ugly” and addressed some of the legal concerns over the bill’s wording, in particular that there is no duty on health to come up with the provisions in the proposed Education, Health and Care plan, beyond a stated commitment in the new NHS Mandate for ‘joint commissioning’. She called on the government to make sure that children who may not have an educational need but do have a significant disability and so will need health and care provision are included in the final bill.

Gulshanah also called for the new SEN Code of Practice that must accompany the bill to undergo parliamentary scrutiny because it is the bible that parents, SENCos, lawyers and Local Authorities use and as such it is vital that it is closely inspected to ensure that it is the best it can be. Make it updateable by all means, but first of all, it has to be right.

Co-production a “no-brainer”

I spoke on behalf of Family Voice Surrey as co-producers of the conference and this, in itself shows how far we have come in changing the relationship from being on opposite sides to having our opinions given equal weight. If this government is to be lauded for just one thing it is that parents have been put at the heart of the reform and mandated to be closely involved with any decision-making processes that will, of course, affect our children. Even though my boys are now 15 and 13, with an EHCP going up to 25, we’ll be in the system for at least another ten years.

Family Voice Surrey is still a relatively new parent carer forum. We had our launch about this time last year it’s been quite a challenging year so far because we had to plunge straight into the pathfinder workstreams as parent representatives.

Fighting to get the right support can be lonely and isolating and frustrating, especially when it seems that the services you need are not available or you’re told your child doesn’t qualify for them or that you’ve have to fight for the educational help they need every single step of the way.  Expensive legal battles for assistance have become far too common and unacceptably adversarial. We all have many horror stories and they are still being created as this culture change has most definitely not yet filtered through to the coalface of SEN departments up and down the country.

Changing all this is what the reforms are supposed to be about. As parent representatives, we’re not there to window dress. After a tentative beginning on all sides, we’ve worked together for the best part of a year, and our views are listened to. I think that co-production has largely so far been a positive experience. It has most certainly given us a voice as parents and, I think, Surrey has seen the benefits of having the first-hand perspective of SEN services that we bring – even though our views are not perhaps always comfortable to hear.

It’s a no-brainier when you look at it. How do you know if you’re delivering the right support and services if you don’t speak to the people using them and their families?

The Minister, Mr Timpson certainly seems to be listening to those concerns that have been voiced and I hope that the bill’s wording is tightened up as soon as possible. Good intentions and assurances are fine, but I think everyone would feel much better if it was down in black and white in the Bill itself.

Reform – expensive but worth it

As for the trials themselves- they are only just beginning. Some families have been recruited, but this is an ongoing process.  Key workers- the person who is to guide a family through the whole process- are still being found and trained. The trials will need to be monitored and evaluated and, at the moment while there is nothing in law, a child who qualifies for an EHCP will still also need a statement as their statutory protection.

There is still much work to be done, and as the trials have been extended until September 2014, more money will need to be found to support this. There’s no doubt it’s going to be hugely expensive by the time the new system is finally in place, but if there’s something worth doing, it’s this.

In the same way that it is right to support children from difficult backgrounds so that they do not perpetuate the expectation of a life on benefits, it is right to support children with special needs and disabilities because many, though obviously not all, will have a much better chance of becoming a contributing member of society with the right assistance when it counts – in their school years and early adulthood.

This is the way to cut welfare – over a generation of helping our adults of tomorrow reach their potential, have a positive outlook and believe that they can achieve their dreams, wherever they lie. It is the responsibility of today’s adults – all of us – to help make that happen.

Speech Therapy to stay within educational provision – so said the man from the DfE

One question on many lips in the reform to the special educational needs system is, with the inclusion of health in an EHCP, where will speech and language provision end up?

As it stands at the moment, the Health part of an EHCP is not going to come attached to a statutory duty to provide and so if it ends up in the health part of a plan and isn’t delivered, how will you appeal?

However, my friend and SEN barrister, Gulshanah Choudhuri, this week attended the Education Law Association’s specialist SEN group meeting and asked this very question of Phil Snell, policy advisor for the DfE. Mr Snell was giving a presentation addressed to the members of ELA, followed by a question and answer session.

Gulshanah Choudhuri

Gulshanah Choudhuri

Gulshanah asked about her own daughter, who has Down’s syndrome, and whether her speech therapy would go under the new health provision or remain under education. Mr Snell, in front of an audience of around fifty lawyers besides Gulshanah, assured her it would remain under education.

The pathfinders have now been extended until September 2014 – the same month it’s planned to introduce the changes after the bill gets Royal Assent at Easter 2014. This has raised concerns that the legislation will be introduced before the trials on the reforms are complete.

The National Deaf Children’s Society (NDCS) is calling for the bill’s introduction to be delayed, so that the pilots have more time to test the reforms. The charity is particularly concerned about how the new system will fully involve health professionals.

Quoted in Children and Young People Now, Jo Campion, deputy director of policy and campaigns at NDCS, said: “We have been looking closely at the pilots and speaking to families with deaf children. The evidence we are getting back is that professionals in health are not getting involved.

“Some parents are telling us that at the joint plan meetings health professionals are simply not showing up. If these reforms are supposed to be radical then the legislation will need to be strengthened to place a legal duty on health agencies to get involved. Currently that is not there.”

NDCS is also worried that local cuts to education provision will mean less services and staff are available to support children with SEN as the reforms progress.

Mr Campion said: “The cuts are affecting professionals who are working with families in the pilot areas who are under threat of losing their jobs. How will the government be able to test these reforms if there’s no-one left to work with families?”

Contact a Family’s head of policy Una Summerson agreed that the government should take time to consider the evidence from the pilot areas before introducing changes to the law.

“This is an enormous change to the system that needs to be tested properly so we are pleased about the extension,” she said. “But we are concerned that the legislation will be introduced early next year before the government has been able to collect the evidence.”

There are also fears that children with speech and language difficulties could miss out on specialist support under the new system.

The Royal College of Speech and Language Therapists (RCSLT) warned that the majority of children with speech, language and communication needs do not currently have a statement of SEN, and therefore may not be eligible for new single education, health and care plans.

But Christine Lenehan, director at the Council for Disabled Children, said the government is right to extend the pilot scheme due to the complexity of the reforms – despite other concerns about the changes.

“It is encouraging to see the government taking the pathfinder work seriously and giving them additional time to test out what works best in these complex areas,” she said.

Mr Timpson meanwhile said, “We want the best for children and young people who have special educational needs or who are disabled,” he said. “Our reforms will help children get support swiftly, make progress in school and then go on to live independently later in life.”

Source for the second half of this article is Children & Young People Now

Common sense prevails with more time to test the SEN reform proposals

Minister, Edward Timpson at the Select Committee today

Education Minister, Edward Timpson, has, it seems, listened to the concerns that so many, including Special Needs Jungle, have voiced – that the pace of SEN reform is too fast and more time needs to be given to learn from the pathfinder trials. At the Education SEN select committee on Tuesday, he announced the extension of the Pathfinders for a further 18 months to run through to September 2014. This is six months after the the bill was originally slated to pass into law and I, for one, welcome it. He did, initially, say he still wanted the bill to be passed by the original date, however.

The Minister said, “The overwhelming view is that we are moving in the right direction, but we want to get this right and if that means listening for a little longer, then I am prepared to do that.

In response to concerns from some that the new bill will remove rights that are already existing, Mr Timpson offered assurances that families’ current protections under the existing statementing system are intended to be carried through to the new system. This includes the right to request an assessment, which will also include parents, GPs and Health Visitors. Earlier, parent representatives at the meeting had highlighted the issue that the wording in the current bill did not make it clear that local authorities still had a duty to respond to a request for an assessment within a specified time period. Mr Timpson did not give a clear answer about imposing statutory time scales to ensure that local authorities could not drag out an assessment.

Mr Timpson said, “In no way shape or form is there an intention to water down the protections that parents currently have and if that requires some nuances to the drafting in the clauses that are currently before the committee, then I’m happy to go back and have a closer look at.”

Mr Timpson was at pains to point out that the purpose of the reforms was not to save money  – in fact, he said, spending on SEN had increased from £2.7 billions  in 2004/5 to £5.7 billions in 2012/11

The Minister also said that the Department for Education is working closely with the Department of Health to ensure health play a greater part in a new SEN and disability system. This was in response to concerns that in the draft bill at the moment, only local authorities have a duty to provide the therapies and support specified in a plan.

Regarding the health issue, Sharon Smith of Hampshire Parent Voice, part of the SE7 pathfinder, illustrated it using personal concerns relating to a duty on health to provide the specified therapy and care. She cited her daughter, who has Down’s Syndrome, needing speech and language therapy and if this came under health provision and wasn’t forthcoming, there would be no way to appeal or ask for a judicial review.

Mr Timpson said they will be looking at the NHS mandate and at redress in the NHS constitution, as well as ways to forge links between Joint Strategic Needs Assessments and Health and Wellbeing Boards.

Extension of pathfinders

Mr Timpson explained his decision to extend the pathfinders from March next year to September 2014 saying that in some areas of the trials there was already a grounding of good evidence (not quite sure which ones he means) but in other areas they still need more evidence- for example personal budgets- for the right regulations and a new Code of Practice to be formulated. By Next March, the bill still would not be on the statue books and so they would use that gap to learn from the pathfinders.

When pressed on the question of when the legislation would be introduced if the pathfinders were going to continue until September 2014, the Minister said, “I want to make sure we get legislation right. If that means a short delay in introduction of bill, so be it. But it is the parliamentary authorities who have the final say in what legislation is going to be introduced, when.

Which is very handy, it seems to me.

Mediation

When challenged about the proposal for mediation to be compulsory, the Minister said that there would be no in-built delay as a consequence of there being mediation, in that the two month period in which an appeal can be triggered would not be affected, as they anticipate mediation to take place within the first month. His answer to the question of capacity of mediation services was somewhat confusing, however. It also seems to imply that parents can still appeal in the same two month window as they can now with no delay. This needs further clarification.

Transitioning to the new system & legal status

The parent and service user panel

Questions were raised about how to transition from the current system to the new one for those children who already had statements. Mr Timpson said he wanted to avoid ‘blind panic’ and so the transition needed to be systematically and carefully introduced. He wanted to assure parents that the current elements of their child’s statement would continue in an EHCP with the same legal standing and EHCPs would have the same legal status as statements.  All current rights that parents have, he said, would be protected through the legislation.

Addressing worries that there is only a legal duty for the education part of an EHCP to be delivered, the Minister said that joint commissioning would give a duty to health and social care to cooperate and work with education and parents. I’m not sure I’m convinced about this, myself, and I’m sure many of my colleagues in the pathfinders will feel the same way.

For a transition from a statement to an EHCP, he said there would be obvious points – for example at an annual review or post 16 instead of moving to an LDA they would transition to an EHCP, but Mr Timpson said it was something they would need to think very carefully about. He didn’t think there is a single cut off for all children, but they would use the pathfinders to provide evidence on the best way forward.

With the all-encompassing approach of an EHCP, questions have been raised about what happens if a young person is out of education but still requires input from health and/or social care and Mr Timpson appeared to  indicate that local authorities would have a duty (a legal duty??) to try to get these young people back into education. He acknowledged there were difficulties when a young person was in higher education as they had their own structures but did believe that it was important to bring apprenticeships under the auspices of an EHCP.

Additionally, if a young person takes a year out at, for example 18, they will have a right to ‘reactivate’ an EHCP if they come back into education and if it if decided they no longer meet criteria, they will have the right, themselves, to register an appeal.

There has been talk of redefining Special Educational Needs but the Minister said the current definition was the one that was intended to be carried through, but as it was something they wanted to get right, they would continue to carefully consider the issue.

Terminology in the draft bill has been called into question and Mr Timpson said that the term ‘set out’ was intended to be the same as the existing ‘specify’ and it was not a  way of trying to realign what may or may not be available. Which does beg the question, if that’s what is meant, maybe they should have avoided controversy and said that to start off with.

Code of Practice

With the reforms comes a need for a new SEN Code of Practice and many believe that this should undergo the scrutiny of parliament. Mr Timpson said that he believed a new CoP should be a ‘living organic document’ that is concise and can be updated in a more natural way than going to parliament every time a change needs to be made. However, although he seemed on the one hand to be saying there would not be a consultation, he then said that there would be close involvement from parent-carer forums and a need to make sure they play a part. He did say that he was still listening to views that there should be a different route.

A new Code of Practice, Mr Timpson said, would be a document that parents can easily access and that would be clear what their rights are and what the process is for their child’s journey. It would include information about the EHCP, Local Offer and Personal Budgets but he didn’t want it to be labyrinthine. It must be effective, he said and that was why the pathfinders were important in informing that.

Local Offer

The Minister said that regarding the Local Offer, it was not their intention that it would be a duty for the local authority to provide the content of their local offer. However, he then said a key area that it should address is that on the face of the local offer should be information on how a young person could seek redress if they don’t receive the services laid out in it. I must admit I’m a bit confused here.

In the previous committee hearing, the experts present said they believed that there should be a national framework of minimum standards for a Local Offer. In response, the minister said that what was clear is that they want a Local Offer to genuinely reflect what parents and young people want that is local to them with strong local accountability. He said that there would be, in the new CoP, key areas the Local Offer should cover but he didn’t want to be prescriptive.

He implied that it would be up to parents to confront a local authority if what was available to them was not of the same standard as that in another authority.

In my opinion, the average parent of a special needs child doesn’t have the time or energy to go about researching what is available in other LAs and start demanding it from their own. This is why a national minimum standard is a good idea, Mr T. You cannot expect parents to police the Local Authority and its Local Offer – it isn’t reasonable or fair.

The Minister said a national framework was not currently the intention, but they would give it more consideration and I hope that they do for the very reason I have just given.

Congrats to the parents from Hampshire and the young people who made such good points clearly and concisely in their part of the proceedings. I agreed with the points they made completely and they did a really good job!

You can view the live video feed from the Select Committee on the Parliament UK website.

This is a post from Claire Louise from A Boy With Asperger’s. I met Claire at the BritMums Awards earlier this year and we got on really well.
What I love about her special needs posts is the honesty, the love and the frustration that we all feel with our little darlings that she expresses so well.
So, just in case you haven’t seen this already, I thought I’d reblog it here. Have a great weekend
Tania

A boy with Asperger's

Wow… Little man is driving me crackers. This evening his done nothing but talk about wrestling to the point I’m almost smacking my own head against the wall!

His overly obsessed now, I truly never thought anything could come as close as his transport obsession! Obviously I was wrong.

The worst part is how his interest in wrestling is keeping him awake at night again. His back using the melatonin but as usual its not providing much relief. Worse still school inform me that his acting very out of character. It’s been reported that his been saying pretty bizarre stuff like “He would be more popular if he went to prison” this was said as he was asked why he was misbehaving… Another one of his answers was “He gets more respect and makes more friends this way!”

School enquired if it was his medication that could be causing such…

View original post 555 more words

Beech Lodge: A new school offering a practical approach to learning

For some children, a mainstream school setting can be overwhelming, particularly if they have learning difficulties such as dyslexia, dyscalculia or find it otherwise difficult to learn in the same way as the majority of children.

However, there are very few schools that are set up for children like this for whom a specialist environment is needed.

Daniela Szmigielska and Emma Barklem from Berkshire decided to tackle this to help their own children and others like them by starting their own school.

Opening in January 2013 in Hurley, Berkshire, Beech Lodge School will be a new small independent co-educational day school for children between the ages of 7 and 16+ whose particular needs may not be fulfilled in a mainstream setting and who may not warrant a special school place.

The school building at Top Farm is a newly converted barn in a rural setting which is currently being completely refurbished. It will provide the classroom, assembly and office space suitable for a small number of children, including a garden and for playing and working in, as well as nearby access to woodland and sports facilities.

Beech Lodge will offer an innovative and hands-on approach to education for those children who require an individually tailored learning environment to build social and life skills, have access to therapeutic and specialist interventions and above all the educational tools with which to achieve their greatest potential. Founded by some of Berkshire’s most inspiring teachers and a group of concerned and active parents, Beech Lodge’s aim is to provide a supportive and structured environment enabling those children to thrive rather than just survive at school.

Daniela said, “All children are different and learn and behave in different ways. Beech Lodge will consider the whole child addressing their individual emotional, social, physical and academic needs. We aim to use  variety of teaching strategies and techniques to keep them on task, build self esteem and give them the practical skills for later life. The curriculum puts an emphasis on children developing skills in Literacy and Numeracy with cross curricular links across subjects. Special importance is also placed on outdoor and practical learning, cooking, art, music, drama and physical exercise.”

Beech Lodge will accept children who would benefit from a high teacher/pupil ratio and small class sizes. They may require specialist teaching for dyslexia and dyscalculia as well as access to therapeutic interventions such as SLT, OT and Attachment therapy. These may be children who have restricted coping skills and low self esteem due to a range of difficulties including mild to moderate learning difficulties, social and emotional difficulties, sensory processing issues and missed opportunities at school.

It will be a school for children with ability and talent but for whom mainstream education is overwhelming. A school that recognises not only how vulnerable but also how precious those children are.

For more information see our website www.beechlodgeschool.co.uk, call 01628 501722 or email info@beechlodgeschool.co.uk

Parents on the Warpath…and other stories

It’s been a difficult week for many parents at our school, who have discovered that our LA doesn’t want to pay our statemented sons’ school fees, because there has been a lower-than-inflation fee rise after several years of a freeze.

I do wonder what the council would think if we all declined to pay our council tax because of an increase. Nope, county council, I think you’ve asked for too much this year, so please re-invoice me for a lower amount and I’ll consider it.

This is despite them paying the full (increased) fee for new statemented boys. Bonkers, eh?

Methinks someone a) hasn’t quite understood the existing legislation and/or b) is such an difficult character (this is polite speak)  that no one else in the department has had the courage to whisper that it’s sshh *actually illegal* and s/he’s bringing the authority into disrepute in the eyes of more right-thinking colleagues, parents, headteachers and.. oo, probably the Department for Education. Especially if they read it here. Who knows?

To say we’re all angry and distressed is a very large understatement. I did write to the LA earlier in the week, and am still awaiting a response. I’m not a very patient person, but more patient than some parents who’ve already written to their MPs to voice their complaints. Quite right too.

I’ll be doing the same next week (and maybe even speaking to my excellent contacts in the local press and regional TV), unless our esteemed headmaster finishes half-term on Thursday afternoon holding a nice cheque for the right amount and not a penny less. The press love stories like this, though – I should know, having been a journalist for quite a long time.

Really, don’t mess with special needs parents and most certainly DON’T mess with their children’s education that they’ve fought hard to secure. They’ve been through statementing and come out the other side still standing (just about). Do you think they’re going to let this slide? I think not. You only have to read our Facebook Group to know that.

If you’ve been in a similar situation, do let me know.

On to some great stories from the week:

Silent Sunday .. For all Parents of special needs kids

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Doing your best is all you can do

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. I’m pretty sure I know what the diagnosis will be but it hurts to see my 13 year old son in so much pain that he is hobbling around.

Do your best.. even when blowing bubbles

I spoke to our school nurse and, because of his school’s hilly campus, it is likely that we will have to draw up a care plan for him so that, if the pain persists, we find a way for him to attend lessons with as little discomfort as possible. Once a diagnosis is made, I will talk more about the condition as, although classed as a rare disease, it may be much more common than thought.

This has made me realise even more how futile it is to have expectations, high or otherwise, when you have children with special needs. Whenever things are going well and you rest on your laurels, you might think it’s ok to concentrate on other aspects of your life, such as work. This is always a mistake. So it is necessary to concentrate on everything at the same time – to keep your eye on all the balls in the air for whatever you have to do.

This is, inevitably, stressful and, as some have recently discovered, can make you short-tempered with those who do not try as hard as they might. It also means that, occasionally, one of those balls is dropped. For example, I have been so focused on my work and the children that sometimes, my poor husband doesn’t get the attention he deserves when he has supported my new, busier schedule and cheered me on.

I expect a lot from myself, however, and set myself high standards. In practice, this inevitably means I often disappoint myself when I am forced to let someone down. Today, for example, I was supposed to be going to Woking to attend an SEN meeting. However, Son2’s urgent blood test, meant I had to let someone down in order to do something more important. Unavoidable, but it still didn’t make me feel good. Happily, we managed to have the meeting later via a conference call. Then I was supposed to be meeting a new friend when I got a call to say Son1 also wasn’t well and could I collect him at lunchtime? Meeting cancelled.

I have also, up till now, expected a lot from people around me  in terms of people doing their best. I don’t care what anyone’s abilities are, I just care that they try their best, whatever their best is at that moment in time.

Is this unfair? Actually I don’t think so. No one can give their top performance all the time – our energy varies from day to day. But note, I said “their best whatever their best is at that moment in time”. It is something that I really want to impress upon my boys, despite their undoubted and, in Son2’s case, increasing, difficulties.

No one can expect more from you than your best, whatever that may be, but you should give your best at all times even if it isn’t as good as it was yesterday. I mean who wants to be a slacker? I think if you go to your deathbed knowing that you tried your hardest to achieve your goals (whatever they are) and make life better for other people (if you are able to) then you can die happy.

For some this may be achieving great things, for others, the gains may be more modest, but it’s not the size of the achievement that matters, it’s the effort. For people with a learning or physical disability, what may look on the face of it to be a small gain, may indeed have actually been a colossal effort worthy of huge praise.

I am also lucky to be involved with people who do more than is expected, who go the extra mile to do a great job and those who frequently think of others before themselves. These people inspire me to keep on keeping on even when, as today, I want to bury my head under the covers, go to sleep and wake up to find myself living in a fringe universe where the good live long and happy lives, where no one is hungry and where kids are pain-free and universally well-treated.

Maybe in another lifetime.

Thoughtful special needs blogs, top tips and news you can use

It’s been a busy week for lots of special needs mum bloggers – as you’ll see there are some fabulous, thought-provoking posts from Claire at A Boy With Aspergers and Deb and Aspie in the family, as well as a couple from Lynsey at MummaDuck. I love reading their posts, they’re always interesting, sometimes moving and are a reminder that resilience and strength can be found even at the darkest and most difficult times.

I’ve changed the format this week to give a little taster of what you can find if you click the link and I hope you do, because these articles and blogs are all well worth taking the time to read.

There will be no round up next week as I will be in Sweden talking social media at a meeting of Europe-wide limb difference organisations. It’ll be a chance to meet lots of new people who will all have their own perspective of what it’s like to live with physical disability in different parts of the world.

So make these stories last, if you can! You can also subscribe to this blog via email or on your kindle. Even better now they have new types of Kindle just out or if you have the Kindle app for smart phone or tablet. Enjoy!

Lots of our children have difficulty with laces, especially if they are dyspraxic, and Son2, for one, has developed his own, somewhat unique, style of doing his shoes up. These days it’s easier with velcro straps, but sometimes, such as with trainers or football boots, it’s just not possible. Plus, as they get older, velcro isn’t very cool…

Children who suffer emotional neglect may have a higher risk of chronic cerebral infarction as adults, an observational study found…

I have indicated in previous posts that things have been getting tough with J1 in ways other than his physical disabilities.  I do not mean for J1, but for me…

Epilepsy occurs at a much higher rate in children with the diagnosis of autism. I have a 7-year-old son with the diagnosis of PDD-NOS. After hearing Michael Chez, MD, speak about the high rate (about 66%) of abnormal EEGs in children on the spectrum, I got my son tested…

I don’t think anyone would argue with the fact that our present understanding of autism, with all its heterogeneity, elevated risk of comorbidity and slightly more fluidic expression than perhaps originally thought [1], still remains quite limited…

Despite the success of the London Paralympics, new research has revealed that 86 percent of disabled people who responded to a recent survey think the UK travel industry is still not providing sufficient information about disabled access and facilities…

A few months ago, Special Needs jungle ran an article about Pathological Demand Avoidance by Deborah Rourke There was an incredible amount of interest in this article, written from Deborah’s experience. In November, the National Autistic Society is to hold another conference on PDA…

So the draft legislation has been out a few weeks now and one of the biggest changes that has stood out most to me is that of Compulsory Mediation. As things stand at the moment, A parent can lodge an appeal to the first tier tribunal as soon as the local education authority (LEA) has written to the parent setting out a child’s proposed provision in the form of a draft statement…

My son is continuing to receive home tuition provided by the local authority.  For 4 days a week he receives about an hour of tuition a day covered by two tutors.  It doesn’t sound a lot but this is all he can cope with at the moment…

I begin with my own high point of the month over at Downs Side Up which sent me dashing to my Mac with tears in my eyes, the kind of blog post that is written in 20 minutes because the emotion is so crystal clear…

Rather than David Laws, who took over Sarah Teather’s ministerial job, and much to the relief of many I expect, the SEN portfolio will be managed by Edward Timpson MP who is Parliamentary Under Secretary of State (children and families). Mr Timpson has sat on the Children, Schools and Families Select Committee and the Joint Committee on Human Rights. Until his ministerial appointment he was also chairman of the All Party Parliamentary Groups on Adoption & Fostering and Looked After Children & Care Leavers, vice chairman for the Runaway & Missing Children group…

The Department for Transport (DfT) has launched a consultation on who is eligible for the Blue Badge Scheme when Disability Living Allowance (DLA) is replaced by the Personal Independence Payment (PIP). This is due to happen for people aged between 16 and 64 from April 2013. They are seeking views on three different options…

The SEN bill’s future is in the hands of.. well, what a welcome surprise!

The last week has been really hectic with my boys going back to school and a huge workload, but I’ve just been prompted by a blog comment to write about just who will be responsible for SEN and the draft bill following the reshuffle.

Rather than David Laws, who took over Sarah Teather’s ministerial job, and much to the relief of many I expect, the SEN portfolio will be managed by Edward Timpson MP who is Parliamentary Under Secretary of State (children and families)

His responsibilities include: Adoption, fostering and residential care home reform; Child protection, special educational needs; family law and justice; children’s and young people’s services; school sport; CAFCASS; Office of Children’s Commissioner

I have done a little research and am quite pleased at what I have found. Mr Timpson grew up in a home where his parents fostered many children and he has two adopted brothers. He is married and has three children of his own.

Mr Timpson has sat on the Children, Schools and Families Select Committee and the Joint Committee on Human Rights. Until his ministerial appointment he was also chairman of the All Party Parliamentary Groups on Adoption & Fostering and Looked After Children & Care Leavers, vice chairman for the Runaway & Missing Children group.

So, it seems that someone with an actual interest and experience in and knowledge of vulnerable children and special needs. This is very welcome and, indeed, somewhat reassuring.

There are many who are concerned that the draft bill may not live up to expectations. It will be interesting to see what the future holds with someone who clearly cares about the issues concerned at the helm. As I have said before, I do not think that, unless you have had close experience of having or working with children like ours, and/or children that no one else seems to want, you can only sympathise, rather than empathise. Mr Timpson certainly seems to qualify as having experience.

He also has a personal interest in rare diseases, another subject close to my heart. I work for an organisation concerned with rare diseases, Son2 is about to be investigated for one and I myself have a rare eye disease, PIC, that can flare up overnight to leave me with very limited vision in one eye.

Of course, I know only as much about Mr Timpson as the above, and that he is a party loyalist. But he seems like a decent chap and has demonstrated that he is a good fit for the role, on the face of it, at least.

I look forward to hearing from Mr Timpson when he speaks about how he sees the draft bill developing. I hope he will use the experience that he has to make sure the bill is vastly improved as it goes through the stages and that he has the gumption to listen to the many, many voices, calling for a slowing of the pace.

If you haven’t seen it already, your views are being called for on the draft bill. I’ll be submitting mine as part of Family Voice Surrey parent carer forum. You have until October 11th. See this post for more information 

Apologies – and it’s not even Friday 13th

Apologies to my email subscribers about the unfinished nature of their last post – it was, in fact, beautifully finished, with a hand crafted image – my weekly round up.

Hit publish and it decided to lose the last set of changes and send out a draft version.

It’s Friday afternoon. Pick up time. First week of school. I have officially lost the will to live. I have also just spilled water on my iMac keyboard.

I am drawing a veil over this afternoon and I am afraid I don’t think I can bear to redo the post.

Have a great weekend!

Tania

KFC dish out work placements to ‘shunned’ youngsters

News today of a great initiative to help young people who are socially disadvantaged to gain valuable work experience and find a potential new career path.

The UK’s largest children’s charity Barnardo’s has joined forces with restaurant chain KFC to help Barnardo’s service users get a foot on the job ladder. Evidence provided by Barnardo’s shows that vulnerable young people are more likely than their peers to struggle to find work:

  • Permanently excluded children are 37% more likely to be unemployed than those who complete mainstream schooling;
  • Those who have engaged in substance abuse or criminal acts by the age of 13/14 are more likely to struggle to get into employment, education or training;
  • 33% of care leavers are not in employment, education or training at age 19;
  •  12% of 16 – 18 year olds with learning difficulties are NEET compared to 6% of those without disabilities

The new partnership harnesses KFC’s expertise in training and development, and invites young people from Barnardo’s are invited to interview for a work placement in their local KFC restaurant. The work placement can last from 1 day up to four weeks and is followed by a work review. Depending on their ability, a young person may complete one or all stages of the programme.

Barnardo’s Chief Executive Anne Marie Carrie said, “Now is a tough time for any young person to start out in the world of work but those who are vulnerable are in danger of being shunned by the work place. The Government has made some headway to tackling the issue of youth unemployment but private and voluntary sector partnerships have a vital role to play in equipping all young people with confidence and skills on their journey towards work. Collectively, we must commit to doing whatever it takes to get young people into work, so that we can look the most marginalised in the eye and know that we are doing right by them.”

Barnardo’s takes part in the Government’s Youth Contract and Work Programmes but also works in partnership with local employers, schools, colleges and charities across the country. The charity trains and supports more than 4,000 young people through its thirty employment, training and skills services across the country every year. The young person does not get paid for his or her short placement because they must be supervised at all times and are not deemed to be ‘adding value’ to the business, but are, instead,  learning and gaining valuable skills and experience from it. Travel, lunch and uniform costs are reimbursed by KFC.

Barnardo’s service user Jamie, 20, who recently completed a work placement with KFC and as a result of his hard work has been offered a job at a KFC restaurant in Manchester said, “I’ve been in and out of care homes most of my life. I could never concentrate in class, and I didn’t get good grades. To be honest I thought I’d never get a job. But Barnardo’s has helped me deal with my problems, and thanks to KFC’s training, now I’ve got a job. I feel proud of myself.”

KFC UK & Ireland Managing Director Martin Shuker said, “Training and development is one of our greatest strengths as a business so we feel this is an area in which we can make a difference. By getting Barnardo’s youngsters into our restaurants, we are not only transforming their lives by giving them vital work experience skills, but we are motivating our own staff and gaining fresh perspectives on our work. We want to encourage employers everywhere to be braver and to give vulnerable young people a fighting chance at getting their foot on the employment ladder.”

The number of unemployed young people in the UK has increased dramatically by 80% in the last ten years and 50% in the last five.

  • Youth unemployment (18 – 24) currently stands at 1,012,000 – close to its highest level since comparable records began in 1992. That’s one in five 18 – 24 year olds who are unemployed.
  • 968,000 young people are currently NEET (16 – 24) – close to the highest since records began in 2000. That’s one in six 16 – 24 year olds.
  • Long periods of unemployment, or moving frequently from one temporary post to another, while people are young, has a ‘scarring effect’ that lasts throughout their working lives.

But the young people who come to Barnardo’s – and many others who don’t find their way there – may have been through and left the care system; may have been victims of abuse; may have experienced homelessness; have been permanently expelled or who may struggle with behavioural or emotional difficulties. This means their chances of finding work are even more dire. KFC and Barnardo’s are urging others to engage in private and voluntary sector partnerships, in order for doors to be opened to disadvantaged young people, to ensure that their fate is not dictated by circumstance.

Do you run a company that could give a young person from a disadvantaged background some training or could speak to your boss about it? If so, please contact Barnardo’s right away and help give a young person like Jamie a chance of a better future.

Tweet them: http://twitter.com/barnardos

Facebook them: https://www.facebook.com/barnardos

Email them here

Read SEN & Disability News (Quick before they ban disability)

The spotlight is firmly on disability in the media at the moment, with the Paralympics underway, not to mention the ATOS games as disability rights protestors demonstrate against the government’s new assessments aimed at getting people off disability benefits and into work.

It is quite a contrast, as on the one hand the country, quite rightly, celebrates its finest athletes who happen to have some form of impairment, against those, rather more everyday disabled people, who are currently living in fear that vital financial support will be removed from them in a government-ordered assessment that appears to be more akin to blunt force trauma. For a really thoughtful post about this, see my top story selection below by Polly Toynbee in The Guardian.

The government would do well to remember that our society is judged by how we treat our most vulnerable. As they sit and watch as the Paralympic athletes do us proud, I hope Mr Cameron et al, feel at least a little prick of conscience.

Take a look at the week’s stories – don’t forget to leave your own favourite too in the comments

What’s your experience of CAMHS?

Many of our children have to be referred to CAMHS – The Child and Adolescent Mental Health Service – to help manage their behavioural difficulties or perhaps if they are experiencing a difficult period of depression or anxiety.

After a very difficult Year 8, largely due to an issue with a particular teacher about whom the less said the better, we found ourselves in this position with Son2, who has Asperger Syndrome. He was referred by his paediatrician at the end of last year.

The paediatrician, it later transpired, in the battery of blood tests ordered, had not included a Vitamin D test and so missed that part of his issues stemmed from a severe Vitamin D deficiency. This was only picked up by our forward-thinking GP, when Son2’s legs began to cause him pain some weeks later.

So, we wait for the CAMHS appointment. And wait. And wait. Meantime, Son2 was finding it difficult to go to lessons and is on many occasions, unable to go to school at all, a stressful situation for the whole family.

Then eventually, an appointment arrives, SIX MONTHS after referral. My husband takes the day off and off we go. At the appointment is the paediatrician and a CAMHS psychologist who shall remain unnamed to save their blushes. Son2, predictably, refuses to speak to either of them.


We explain Son2’s issues, as the paediatrician yawns through the whole appointment, then takes a phone call. At an appointment we have waited six months for. I studiously ignore him. The psychologist agrees to prescribe a trial of a particular medication and says she will call the school to speak to his counsellor there before we get it filled. However, to the best of my knowledge, she does not and we are left with an unfilled prescription a week later, still waiting to hear back from her. I call and leave a message. No response. So, I decide to get the prescription filled although Son2 will only agree to take it after I take him back to our GP who explains to him the effect it will have on him and that he will soon start to feel better, something, presumably, the psychologist should have taken the time to do.

Within a couple of weeks, indeed Son2 is feeling better and even manages to go to the local shop by himself for the first time in a year. But there is still no word from the psychologist and we are coming to the end of the bottle. I call the GP who agrees to prescribe a further bottle, even though this is supposed to be a monitored trial.

Off we go on holiday, where Son2 has a couple of relapses but is generally much better. When we return, there is still nothing from the psychologist, so I call my GP again to ask who should be monitoring Son2 as we have heard nothing, nor have we received a follow up appointment. She checks her screen and has a recent letter scanned in that says Son2 had been referred to the wrong county sector of CAMHS and had been re-referred to a different local region. They had not bothered to cc us in because, of course, as the child and his parents, we are the least important people in this process, it would seem.

I am incensed. And as David Banner used to say just before he turned into the Incredible Hulk – don’t make me angry. You wouldn’t like me when I’m angry.

I call the new department to find out what is happening and, to avoid my call going ignored again, I  pass on to the lady who takes my details that I am also co-chair of the local parent-carer forum and a response would be appreciated, as I am extremely unhappy at this rather careless administration when they are dealing with a vulnerable child who has been prescribed some serious medication.

An hour later, a lady calls me, very concerned that I shouldn’t be complaining about them and I assure her that it’s not them at fault, but the other CAMHS section. We now have an appointment for 25th September. So, because of this mistake in referral Son2 will have had three months with no monitoring for a child who was only put on an initial trial of an SSRI.

It doesn’t bode well for the future for an integrated health, education and care plan if they can’t even figure out where you should be referred. And at the heart is an autistic boy who has been suffering since the end of last year. Parents should not have to chase for information, it’s very distressing, because it makes you feel very alone and insignificant.

Because of my position, I happen to know the head of CAMHS in our county (a very sincere person, in my experience) and I emailed her to tell her about the whole sorry tale. As I expected, she was horrified and apologised, assuring me she would ensure Son2 received the right treatment and that she would also take steps to make sure this did not happen to anyone else.

However, I am not sure my experience of CAMHS, in any county, is particularly unusual, or even especially bad, and I would be interested in hearing your story too.

August’s top bank holiday SEND stories

After a two week break, the Special Needs Jungle weekly curation of the best of special needs posts is BACK! I’ve tried to include stories I tweeted while I was away in Italy being subjected to torture by invisible mosquitos. My top holiday tip if you have teenagers like mine is to make sure your holiday home comes equipped with free wifi for those inevitable downtimes, so you are never plagues with cried of, “I’m bored!”

My boys still have another two weeks and a bit weeks off, and I intend to spend some of it taking them to our new gym, as I’m fed up of us all being locked in our little corners of the house on our respective computers (though at least I’m doing actual work). The gym is brilliant with a huge pool and great facilities, including a spa (for me, obviously) and, of course, free-wifi so that Son2 can sit pedalling the cycle machine while playing on his iPad. Well, it’s a start and a compromise, but at least part of him is moving.

Have a fab August bank holiday weekend and fingers crossed for good weather if you’re planning a barbecue or a last dash away! Next week – the paralympics!

Does child protection protect children?

This is a reblog of a great post from Debs at ChaosinKent. Debs is one of my personal heroines. She has three kids with special needs and is just an excellent human being. Do click through to read the whole thing.
The ultimate tragedy is not the oppression and cruelty by the bad people but the silence over that by the good people.
 There was a recent report in The Lancet stating that 1 in 4 disabled children are the victims of abuse.  This report was based on 20 years of data from 17 studies (from 1990 to 2010) and involving more than 18000 children.
The authors of the report sadly added that the sitution is possibly even worse than their data shows.
“The results of this review prove that children with disabilities are disproportionately vulnerable to violence, and their needs have been neglected for far too long,” said Etienne Krug, director of the World Health Organization’s Department of Violence and Injury Prevention and Disability.

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.

Volunteering: The best way to spend your summer

We’re heading off for Italy this weekend and because both boys have special needs, we’ve always rented a villa with a pool and taken their Grandma and Nonno along to help out, so that we can all have a break without worrying about potential public meltdowns.

But imagine if your child has a serious physical illness or disease that makes it difficult to go anywhere without a high level of medical support? Pressure on families like these can be immense and no one needs a break as much as them.

Barretstown, based in Ireland, is a specially-designed camp that provides Therapeutic Recreation programmes for children with serious illnesses and their families. But to make it possible, the camp needs thousands of caring and energetic volunteers every year. My colleague, Rob Pleticha, whose day job is Online Communities Manager for RareConnect at EURORDIS, the European rare diseases organisation, is one of them. He volunteers every year to help children who are living with illness or rare diseases. A short time ago, he spent a week at Barretstown and he’s been kind enough to write for Special Needs Jungle about his experience and the camp.

***

You arrive the night before the training. It’s dark but the trees are bright green, the horses are so comfortable, they lay down in the pasture sleeping, and the cabins spread thorough out the grounds emit a warm glow. You sleep well in the Irish night as fresh air fills you.

You’ve come to Barretstown in Ballymore Eustache, Ireland to participate as a volunteer “cara” at an eight-day camp summer session. 120 kids from 7 countries will arrive in two days. They all share the common experience of living with a serious medical condition at a young age.

Barretstown is a member of the European Global Organisation of Serious Fun Children’s Network camps founded by Paul Newman. The five camps in the European network allow over 3,000 children from 26 countries to attend summer camp and have life changing experiences. The services are always free of charge to families.

(more…)