The Sensory Story Project

We love The Sensory Story Project and have been watching it from its early stages.

As a mum to a child with a visual impairment, sensory stories are a huge part of our lives but trying to find or make suitable sensory toys to read with stories has become a problem as he has grown older.

Jo, who created the Project, kindly provided a few sample ideas for us to look at and I asked my son to take a look.

Take a look for yourself and let us know what you think.

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.

NAS petition – Single point of appeal for EHC Plans

The NAS has launched a petition calling on the Government to amend the Children and Families Bill to create a single point of appeal for challenging provision in Education, Health and Care Plans.snj joined upThis change is essential if the Government are to deliver on their commitment to “ending the agonising battle many parents fight to get the support for their families, as they are forced to go from pillar to post between different authorities and agencies”.The NAS welcomes the replacement of education-only statements with joint Education, Health and Care Plans. However as currently drafted the Bill does not provide a joined up system of accountability and redress. Parents will have to go through separate appeals processes for each element of an Education, Health and Care Plan to challenge inadequate provision. They will continue to battle the system on multiple fronts.

Parents tell the NAS that social care and health complaints procedures are difficult to navigate, can take months and sometimes years to resolve disputes and are unable to offer the robust remedies currently provided by the First Tier Tribunals in relation to education statements. The solution is to enable the First Tier Tribunal to hear appeals and offer remedies for all elements of Education, Health and Care plans. Despite debates on amendments to this effect during the Commons stages of the Bill, the Government has resisted this change, claiming existing routes of redress for health and social care are sufficient. This flies in the face of parent’s own experience and the Government’s own ambition to create a joined up and family-centred SEN system.

Time is running out for the Government to deliver on their promise to end parent’s battle for support. The Children and Families Bill is expected to pass into law in early 2014. It is vital that the changes are made during the remaining stages of the Bill on the House of Lords. Take action today by signing their petition.

Please note the SEN changes introduced in the Children and Families Bill will only apply to England.

For more information please contact policy@nas.org.uk

 SNJ are supporting this petition.  The Children and Families Bill is supposed to make life less complicated for parents and having three appeals systems is in no way, by any possible definition, less complicated.  Nor is it line with the “joint” approach that the whole reform system is supposed to be about.
Sign now and show your support.

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?

How to talk to Tigers

How to talk to Tigers?  Why are Special Needs Jungle posting about Talking to Tigers?  It really doesn’t sound like our usual post, does it?

How to Talk to Tigers is written by Jacob Tilley.  Jacob spent seven years living in the forests of India learning how to roar and growl (or so his bio says).  He then decided to write a book about this and he invited Ruby Thompson to illustrate it.  Ruby is a young girl who has autism

2013-03-02 11.29.49

K enjoying a good read

“How to talk to Tigers” is one of those books that as you read it, you know everyone will interpret  differently.

Initially, for me, I was purely looking at the images and thinking “wow”.  It made me remember that we should never limit our expectations.  The illustrations are colourful and fun.

Then my eldest, K, picked up the book and started to read it out loud.  He was in fits of laughter.

The book describes how to talk to “tigers” in different moods, e.g. how to talk to a poorly tiger, how to talk to an angry tiger, a naughty tiger….  you get the idea.  It’s written in rhyme scheme (i.e. the first line rhymes with the second, the third line rhymes with the fourth, etc) and my kids love this and as a mum, I love reading this out loud – so easy and fun.

I think for K, rhyme scheme just makes sense.  There are no shocks, no surprises, lines will rhyme and this is perfectly logical to him.

As K continued to read, between giggles, my youngest son, J, shouted out “this should be called how to talk to K”.  We all laughed but then I read it again later and I realised that J had a point.  One of the lines talking about an “excited tiger” was “they fly through windows, swing from door frames, knock over chairs” and I wondered if there was hidden CCTV in my home that Jacob had access to   So many of the chapters had lines I could relate to, especially the “Happy Tiger”.

I loved this book and it has become one of those that my children often ask for.  We have learned it verbatim by now and so I only have to read half the line and the kids finish it.  We’ve also had some role playing and even K  got involved.  He pretended to be an angry tiger which as any mum of a child who has ASD will appreciate, was a moment of pure joy for me.

What books do your children enjoy?

Parental Co-Production : Your views needed

Our recent post on Parental Co-production really seemed to hit home with many of you.  We received several comments on the blog, on our Facebook page and via our twitter account, so we wanted to expand this and find out more.

smoke-mirrorHave your experiences of parental co-production been positive?  Have you been involved in a project from the beginning and feel that you have really influenced the outcome?

What about with your child – have you (and they) been truly listened to when you have been looking at goals for them and how they can be achieved?  Or did you feel as if everything was decided on your child’s behalf and your views weren’t even considered?

We are looking for parents who would be happy to share their experiences with us.  Or perhaps you are a practitioner who appreciates the value of true co-production but struggle to get your colleagues or manager on board?  Would you be happy to talk on camera via Skype with us?

If you would like to learn more and perhaps get involved, then get in touch by completing the contact form below.  We would really like to hear from you.  Completing the form does not commit you to anything, other than a chat.

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)

Pupil ranking plans are an epic fail for SEN children

Oh dear.  We’ve always said communication is an issue with the SEN reforms but it’s fairly obvious that it spans education as a whole.

Can someone please let David Laws and Nick Clegg know about the reforms going through and let them have the memo about “promoting inclusion”.

When the Department for Education launched the Green Paper, two of their proposals were to give parents a real choice of a range of schools and give children with statements the right to express a preference for any state-funded mainstream or special school.

However, this morning Mr Laws and Mr Clegg have announced a consultation about plans to change performance measures for schools.

  • Pupils aged 11 would be ranked in 10% ability bands across the year group
  • Test results would be divided into bands of 10%
  • Parents will be told how their child “measures up” to their peers
  • A tougher minimum level of achievement for schools (below which an Ofsted inspection would be triggered
  • This is currently 60% for Sats tests but would rise to 85% under the proposed change

So, let’s just consider this.

  • Would a mainstream school realistically welcome children with SEN if this could risk bringing their minimum level of achievement below 85%?
  • As a parent of a child with SEN, I already know that my child is not achieving at the same rate as their peers.  Will introducing a new measurement help them to do better?
  • How would a young person with (or without) SEN, who has tried to the very best of their ability, feel when they find out that their hard work wasn’t good enough and they were banded in a low percentile?  Will introducing a new measurement help their often already-fragile self-esteem?
  • Is it just a rumour or do all children develop at different rates, based on their age and family dynamics?   Will introducing a new measurement put a stop to that nonsense?
laws

Epic Fail, Mr Laws

Speaking on BBC Radio 4 Today programme, Schools Minister, David Laws said he thinks that levels such as 2a, 3b, “Mean almost nothing to parents,”  

Well, here’s a suggestion, why not just explain to parents what they do mean?  That would be an awful lot cheaper and as a parent of three children, I found out what they meant (and any parent who is interested in their child’s progress will have done the same).  

Therein lies the issue, there will always be parents who are more engaged than others and introducing new methods of measuring children’s achievements won’t encourage parents who are not engaged to suddenly become the type of parent who pushes their child to do better.

Mr Laws also said that the individual score won’t be published nationally and children won’t be told the results, only the school and parents will know.  How does he think parents will find out how their child measures up?  Would that be a letter being sent home via their child’s school bag because we all know that children will never look at them?  Or are we going to put the results online and password protect them – because no child can ever access the information that way, can they?

And parents are not going to discuss it with each other or their friends within ear-shot of the kids? And the kids aren’t going to just ask outright? Or brag if they got a great score within the hearing of less able or SEN children?

This has to be, in our opinion, one of the worst thought-out proposals to have come out of Westminster for quite some time!  Transition to Secondary is an issue for all children, especially those with SEN.  However, the proposals being presented today show a real lack of understanding of children, SEN, parents, schools and inclusion.

If I was to score this proposal, in the manner being proposed, it would definitely be in the 0-10% band.  Mrs Laws and Mrs Clegg, I am sorry to have to tell you that your sons are performing way below their peers (but don’t worry, we won’t tell them if you don’t).

Children and Families Bill – you need to take action now [2]

Debs writes

We recently wrote about some of the changes being proposed in the Children and Families Bill that will not benefit families.  We looked at the duty to identify SEN, the annual review, the time limits and also the format of the Education Health and Care Plan (EHCP).

SENREFORM-Magnify

Today, we want to raise your awareness of other issues with the proposed changes and would like to thank Jane McConnell and all at IPSEA for helping to raise awareness of these.

Admission to Special Academies:

At present any child with SEN but without a statement must be educated in a mainstream school.  In order to attend a Special School, a child must have their needs assessed and the LA then have have a duty to fund the provision identified by the assessment.  This, in principle, protects children being placed in potentially inappropriate schools.  There are no exceptions to this in the current legislation.

This principle still exists in clause 34(2) of the proposed Bill but an exception has been introduced. Special Academies (including Free Schools), will now be able to admit children or young people with SEN permanently into the school without them having an assessment or an EHC Plan in place – if they are given permission by the Department for Education.   Now, in theory, this sounds great.  Getting your child into a special academy placement without having to go through the statutory assessment process (especially as the new Bill doesn’t put time limits on the process).  However, there are two issues with this:

1.  It  undermines the principle that mainstream schools MUST be enabled to make provision for ALL children without a statement/EHCP and also MOST children with statements/EHCPs – so if a mainstream school knows there is a Special Academy nearby, there will be a strong temptation to point the parents in their direction, rather than take the child themselves and have to cater for their needs.  So no aspiration necessary for the mainstream school to improve their teaching to include children with SEN with or without a statement or EHCP; and

2.  If a child with SEN is admitted to a Special Academy without EHCP – what happens when things go wrong?  What if the Academy cannot meet the needs of the child?  What if the child, due to no assessement of needs, is placed in the wrong Academy?  There is no duty for the LA to fund the provision without an EHCP and the parents will have nothing to challenge the school or LA with if there is no EHCP.  What about the Health and Care provision?  If no assessement or EHCP, how will the school and family know they are meeting the Health and Care needs of the child?  Yes, there will be minimum standards that all schools must adhere to – but let’s be honest, have you ever tried to find your LA’s miminum standards and if successful, actually make sense of them?   There is of course the NHS constitution and the Children’s Act but very often, to access the Social Care side of support, a statement is currently needed so no EHCP could, in theory mean, no access to that support.

We need the DfE to seriously consider this option.  Having an assessment ensures that the child’s needs are accurately recognised and provision put in place.

Re-assessment of Needs:

At present, a re-assessment is the same as an assessment.  If a child or young person’s needs change, then a further assessment can be requested and if agreed, then the LA has to comply with the statutory assessment duties.  This includes time limits, consulting with the professionals named in the Regulations (education professionals, educational psychologist, social services and health services).

However, in the proposed Bill, a new concept of re-assessment is being introduced.  LAs will be allowed to decide what format a re-assessment takes.  There will no longer be the same duties to consult and obtain evidence from the professionals named above and they can also choose to review just one area of the EHC Plan.

Also, there is no duty for the LA to conclude the process of re-assessment at the two points which would trigger a right of appeal to the SEND Tribunal (i.e. when the LA decides not to issue an amended EHC Plan or when the LA issues a new EHC Plan with which the parent disagrees).

So basically, if your child’s needs change, the LA can re-assess but may only reassess one part of the Plan, e.g.  the health part but no need for them to reassess the Education and Care part of the Plan.  As we all know, each of these impacts on the other which is why the idea of an EHC Plan was so popular with parents.  One plan that looked at their child holistically, no need to tell your story more than once, everyone working together, etc.  So why have a joint plan, why jointly commission, why fund “Working in Partnership” workshops if once the EHC Plan is published, any re-assessment reverts back to individual agencies.

If you are not happy with the proposed amended EHC Plan or if the LA decides not to issue an amended EHC Plan, then the proposed Bill (in its current form) does not give you any right to appeal to the SEND Tribunal.

Again, this Bill is introducing changes which, if we are honest, are based on every LA existing in a world we don’t live in.  Yes, in an ideal world, LA’s would never not re-assess, they would always produce an amended Plan if the child’s needs changed, the plan would always look at the child’s need in every aspect of their life and the LA would unreservedly support families if their current school did not meet the needs of their child.  However, we live in the real world.

We need to take action now, before the Children and Families Bill becomes the Children and Families Act.  If you want to know how to take action, please visit the IPSEA website

Children and Families Bill – you need to act now [1]

Debs writes….

sen reform special needs jungle

Last week, I had the pleasure of listening to Jane McConnell (IPSEA‘s Chief Executive) speak at the Towards a Positive Conference.

As Jane spoke, I realised that the messages about the Bill are not getting out – either people think the changes don’t affect them or the changes just won’t happen.

However, if you have a child or young person aged 0 to 25 with ANY additional needs, then you need to take five minutes out of your busy day (and as we are parents too, we know how chaotic our days can be) but the changes being proposed WILL affect you and not all of the proposed changes will help families.

This week we will be sharing with you the changes you need to be aware of and also saying how you can take action.  Please share these posts with your friends and colleagues.

Which proposed changes will reduce or remove your current rights?

Duty to Assess SEN:  At present, there is a PROACTIVE duty to identify the needs of children and young people with SEN via assessment:  “Proactive = Acting in advance to deal with an expected difficulty”.

In the Children and Families Bill (in its current form), this has been reduced to a duty to identify.  “Identify = To ascertain the origin, nature, or definitive characteristics”.  There is no duty on the LA to be proactive.  This is a weaker duty on the LA and will cause issues for many parents who are just entering our Special Needs Jungle looking for help and support for their child.

We need the DfE to ensure that LAs are proactive in identifying needs.

Time Limits:  At present, your LA has a maximum of six weeks from receiving the request for statutory assessment (i.e. starting the statementing process) to decide if they will assess and then they have a further 10 weeks to decide whether they will issue a statement.

The Children and Families Bill, in its current form, will not provide a time limit by which LAs need to make a decision about whether they will issue a Education Health and Care Plan (EHCP).  Once they decide to issue, there will be a time limit of 20 weeks (from the initial request) to issue, but as a mum who has gone through this process four times (once to be turned down), I can remember how anxious I was after my application had gone in, waiting to see if they would agree to assess.

Then, again, the stress I felt when I was waiting for the decision as to whether they would issue a statement.  However, I had taken advice and knew that there was a time frame in which the LA had to make a decision and these dates were clearly marked on my calendar.

I cannot imagine the pressure that parents starting the process  under the Children’s and Families Act will face without the security of time limits.  Yes, some LAs will do this promptly and will act fairly but as we all know, in the real world, there are also many, many LAs who won’t.

We need the DfE to be prescriptive in this.  This Bill is supposed to make our life less stressful, not more!

1209643_dream_graphEducation, Health & Care Plans:  At present, the law says that a statement has to be in a standard format. As set out in the SEN regulations it has to “be in such form and contain such information as may be prescribed”.  However, the Children and Families Bill, in its current form, no longer requires regulations to prescribe a standard form for EHCP.  Basically this means each LA can produce their own version.

Currently Part 2 of the statement has to state the educational needs of the child.  Part 3 has to state the provision to meet the educational needs in part 2.  The provision must be specific and also quantified.

If LAs can produce their own version of EHCP with no regulations about what they have to put in there – what can I say?  We would all love to live in an ideal world where every LA would do everything  possible to meet the needs of every child and no LA would even dream of  spending valuable resources on very expensive legal representation to do battle with parents on their behalf.

Unfortunately, however, we all have to live in the real world  – with budget cuts, lack of resources, lack of working in partnership and in some areas, total lack of empathy and of course, the hugely expensive legal representation that the majority of parents cannot compete against.

We need the DfE to regulate the content of EHCPs and ensure that the educational, health and care needs of our children and young people along with the educational, health and care provision to meet those needs is in every EHCP.

Annual Reviews:  Currently, there is a duty on LAs to inform parents, children or young people of the outcome of the Annual Review.  Once this is communicated, parents and children/young people can appeal to the SEND tribunal if they are unhappy.  However, the Children and Families Bill, in it current form, no longer has this duty.  So, LAs don’t, in theory, have to tell you.

In addition, there are  current duties such as enabling parents to participate in the decision making; the requirement to obtain up to date information before an Annual Review and share it with parents; parents to be able to make their views known and for those to be circulated; the compulsory attendance of professionals at the review meeting at the key states of a child/young person’s education and transition arrangements out of education.

Guess what?  Yes, I think you are starting to get the general idea – there is no duty for any of the above in the Children and Families Bill.

We need the DfE to address this.  Once again, some LAs and educational settings will do all of the above without legislation in place but so many more will only do what they absolutely have to.

If you want to know how to take action, please visit IPSEA’s website

We will be posting soon about some other changes which will reduce or remove your current rights and some outstanding issues with the proposals of the Children and Families Bill.

Carer’s Week: Join me on the Carer’s Circle Line

Debs writes….

During National Carers Week, I think we all give more thought to what being a carer actually means.  Most of the time, we are the same as the young carers out there who think “it’s just what we do” but during this week, we can’t open a paper or watch the tv without the impact of caring jumping out at us.

I always think of being a carer as travelling on ……

Carer's Circle Line

We spend our good days at the top of the Circle Line, relaxed and confident.  These are the days when the services have actually worked together, you are getting the support you need, your child or young person is getting the support they need.  Perhaps you have won a battle to get your child into the school you need,  perhaps you have managed to get a place on a Young Carer’s event for your other child or perhaps you have just managed to get more than three hours sleep.

Sadly, however, we also spend days at the bottom of the Circle Line, withdrawn, exhausted or despairing that things may never get better.

When we are having a good day, we all know how quickly one little thing can send us spinning down to the bottom.  Then when we are at the bottom, it is so much more difficult to get back to the top.  It’s like being on the Pirate Ship at the Funfair – you swing back and to until you get enough momentum to hit the top.

You start to climb back up the side of the Circle Line but  you hit “self pity” and it is so difficult to get past here.  Everyone expects you to be there; in fact a lot of people find it easier to deal with you there as it fits in with their idea of how you should be acting.  However, this just knocks you back down to sorrow and anger and you have to start the climb again.

I firmly believe that when we all work together, the practitioners and others involved in my life, should be able to give me that little push (I do mean metaphorically) and help me get back to the top of the Circle Line.

Then, because we just refuse to fit into boxes, I also have to point out that although I may be “relaxed” today when you meet me, I may not be “relaxed” the next time.  I may be “relaxed” and “confident” but my husband may be at “despair” and then don’t forget my children will possibly be somewhere different too.  The dynamics of the family can be our biggest strength at times but can also be the weakest link.

One of the other issues with the Circle Line is that it’s not easy to get off.  The other lines offer universal services so access to them is not always available.  If we continue the Circle Line analogy, then this is when there are only escalators where we need a lift or only  visual signs when I cannot read.  Those who work with our families can usually jump off the Circle Line and access Universal services.  One day, we can only hope that this will be a possibility for all of us too.

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?

Echolocation (aka Dolphin Boy)

Deb writes..

Some of you may have read a report this week about the use of echolocation in blind children.  In the article, it states “New research from the University of Southampton has shown that blind and visually impaired people have the potential to use echolocation, similar to that used by bats and dolphins, to determine the location of an object.”

As you will know my youngest son is visually impaired and in April 2010, we worked with Daniel Kish from World Access for the Blind.  We had been introduced to Daniel via a lovely lady called Sarah from Common Sense (a parent led charity supporting and empowering parents of children with VI in the UK).  We had approached Sarah as we wanted J to be using a cane but here in Kent, the practice (at the time) was to introduce canes when a child was 7 or 8.  However, me being me, I had researched the use of canes for hours and chatted to other parents across the globe – thank goodness for Facebook – and I wanted J to have a cane much earlier.  Common Sense loaned us a cane and Sarah introduced us to Daniel Kish as he recommended using a longer cane than was current recommended here.  The general practice here is to provide a cane which measures from the floor to the user’s sternum whereas Daniel advocates using a cane which measures from the floor to the bridge of the user’s nose.

Jamie caneWe were very fortunate that Daniel would be in the UK shortly after we contacted him and we arranged for him to spend three days with us.  Daniel is best known for his work using echo-location and we had our first introduction to it when Daniel arrived.  I was amazed to watch this man (with no vision) walk confidently around our home and the local area.

We spent the first day in the local park, walking along a long path which led to a fountain.  Daniel explained how using the sound of the fountain as a target for J would help him walk independently – yes, I was the mum who always held his hand.  Along the path, there was a row of trees and then a large open space.  Daniel explained to J that using a small clicking noise would help him know when the trees were around him and when it was the open space.  I am sure we must have been a very entertaining sight in Kent that day, Daniel and J with their long canes and me with my eyes closed, making clicking noises as we walked along.    But do you know what?  It really works.

You can try it yourself – sit in a quiet room (probably best once the children are at school) and close your eyes.  Hold your hand in front of you at arms length and make a clicking noise; then move your hand closer to your face and repeat the clicking noise.  You will hear the difference.  When an object is closer, the sound is louder and deeper.  You can even do this using a wall in the house – close your eyes as you walk slowly (and carefully) towards a wall and click.  As the wall gets nearer, the sound gets louder.  Then walk towards an open door and hear the difference.

We spent the next two days with several of the practitioners involved in J’s life.  His mobility officer, his VI play therapist, his nursery staff and another mum of a child with VI came along too.  It was fascinating for me, as the wealth of knowledge in my house was just outstanding.  As a mum, it was like a Masterclass on all things VI.

Daniel spent time explaining to J how to differentiate size with the clicks.  This involved lining up several glasses, bottles etc and asking  J to tell us which was the largest, smallest, plastic etc.

jamie homeIt was three intensive days but three days that changed a lot of what we did.  J decided that clicking wasn’t for him so he uses his voice.  He is my son and like me, he likes to chat and if anyone has met me and thinks I talk a lot, they need to meet him and realise I am a rank amateur in comparison.  Due to the fact that he is still a child and less than 4′ high, his voice is a great navigation tool for him as objects are still very large around him.  Cars and garden fences are large in comparison to him so this works well for now.

We are now working on the clicking more, as we appreciate that as he gets older, the talking may have to reduce in quantity (or maybe we are just hoping).  We will spend time out as a family and often we all click just to encourage J to do the same.  We are so used to people staring at us as a family that we no longer have any worries about how we are perceived by others.

The local and national press covered the story and J became known as the Dolphin Boy.  Sarah from Common Sense had worked with Daniel and her son was known as Bat Boy.  The media coverage was quite fun to do ; it really helped to raise awareness and of course, I got to sit with Ben Shephard on the GMTV sofa.

You can see the BBC video here and World Access for the Blind have several links to other coverage on their site

Labels: Love or Loathe them?

Deb writes…

Are labels a help or hindrance?  Do you love them or loathe them?  Do they change the way you or your child are seen?  Do they change the way you or your child are treated?

What about the labels given to the parents?  Oh yes, we all know they happen.  I asked a group of friends what labels they had been given by family, friends and practitioners and if they thought they impacted on the way people interacted with them.  Some of their responses made me genuinely laugh out loud but some were just a touch too close to home.  So what labels are parents given – do you recognise yourself in any of these?

Labels c. SNJThe Bubble Wrap parent.  Also known as a Cotton Wool parent.  This parent is judged as being too protective, hindering their child’s development.  They are seen as not allowing their child to experience life or not allowing their child to take normal risks.

The Bolshy Demanding parent.  Also known as the Rottweiler parent.  This is the parent who is educated and knows what the standards for services should be.  This is the parents who refuses to take “no” as an answer; the parent who will stay up all night reading the Education Act or the Equality Act so they can challenge decisions made.  This is the parent that the good practitioners admire and the bad practitioners detest.

The Competitive parent.  Also known as Oh no, here they come parent.  This is the parent that other parents dread bumping into.  The one who wants to constantly tell you just how much harder it is for them than you.  The one who makes other parents walk away from support groups believing they don’t belong there as their child isn’t disabled enough.

The Coping parent.  Also known as the Brave parent.  This is the parent who, from all appearances, seems to be dealing with everything perfectly.  They just get on with it – or so it would seem.  This is the parent who never asks for help and rarely, if ever, complains officially.

The Helping parent.  Also known as the Hindering  or Controlling parent.  This is the parent who supposedly hinders their child’s development by helping them too much.  The parent who will do “things” for their child instead of allowing their child to learn to do it themselves.

The Neurotic parent.  Also known as the Over Anxious parent.  This is the parent who looks for problems that don’t exist.  The one who refuses to accept “they’ll do it when they are ready”, the parent who thinks their child is not developing at the expected rate.

The Unengaged parent.  Also known as the Hard to Reach parent.  This is the parent that doesn’t access services, doesn’t respond to surveys; the parent who doesn’t always show up for appointments.

SuperMumAnd let’s not forget everyone’s favourite – the Special parent.  Also known as the Super Hero parent.  This is the parent who  gets told   “I don’t know how you do it”, “I think you’re amazing”  “I wouldn’t be able to do what you do” and the ever popular “only special people get special children”.

So which label fits you?  If you are anything like me, then you will have heard most of these at one time or another.  Usually I am known as the bolshy, demanding rottweiler (and yes, I was actually called that) and the coping parent.  Oh, and of course, the “Special” parent.  Which means that when I find myself having a bad time and not coping, no one quite knows what to do with me.  I had been put into a lovely little box and I fitted in there nicely – how dare I come out of it!

Often, this is what happens with our children.  They are given a label and society/family/practitioners all have different expectations of what that label means.  For example, Autism can mean “rain man”, “no eye contact” or “just naughty” depending who you speak to (and how your child presents at that particular time) but as any parent will know, our children are individuals and have their own personalities.  They also have good and bad days – why should a label change that?

We often label practitioners.  Supportive, waste of time, self-interested, my life-line, pen-pusher and the list goes on.  How often though, have you had met a practitioner and thought they were fantastic, only for a friend to be shocked because their experience had been very different?  Does that mean practitioners are individuals, have their own personalities and have good and bad days too?

So, if this applies to our children and to practitioners, then obviously this means we too are individuals with our own personalities.

Why should a label change that?

Today is Pathological Demand Avoidance (PDA) Awareness Day

The PDA Contact Group have guest written a post for us – if you are experiencing this with your child, please get in touch.

PDA is a very unknown, rarely spoken about and unrecognised ‘Autism Spectrum Disorder’.  The condition was first recognised in the 1980’s by Professor Elizabeth Newson .  PDA has always existed but it was Newson who first saw the striking similarities between these groups of children and proposed that there was sufficient evidence to warrant the inclusion of PDA as a separate sub group within the ‘Autism Spectrum’.

If you would like to learn more about PDA please click on the link here below.

It is vital that PDA becomes more recognised and diagnosed by clinicians the world over.  Across the UK diagnosis of PDA is still very patchy because it is only recognised in a few Local Authorities.

Attachment-1 At the moment many children are described as having PDD-NOS (Pervasive Development Disorder Not Otherwise Specified), A Typical Autism or Asperger’s along with a host of co-morbid disorders including Personality Disorder, ADHD, ODD, Attachment disorder or simply referred to as just being naughty leading to parents being accused of poor and ineffective parenting.

None of these currently used terms accurately describes or provides parents with the correct understanding or strategies that at PDA label does.  One label, one diagnosis, one profile and one set of strategies and handling techniques, now doesn’t that make more sense than a montage of ill fitting ones?  The National Autistic Society (NAS) and the AET both recognise PDA. It is about time that PDA is recognised throughout schools, practitioners, therapists and the wider community and by organisations such as NICE.

Correct diagnosis essential

The diagnosis of PDA provides parents with the correct profile for their children and sign posts them to the correct support groups and strategies.  This is vital for the emotional well-being and long term prognosis for these individuals.  A collection of ill fitting labels that are mashed together to try and describe the complexities of this child are unhelpful and do not provide parents with the correct sign post.  Early diagnosis, recognition and intervention can lead to a much more successful outcome for these individuals.

There is currently a huge surge from parents and a handful of professionals who are desperately campaigning to raise the awareness and profile of PDA.  Recognition and numbers are growing and PDA is really beginning to snowball with more and more parents joining the PDA support groups and demanding the correct support, help and diagnosis from their local authorities.

The time for change, recognition and respect for parents who do such a wonderful job raising their children, with next to no support from many of the professionals involved has arrived.  The time for change is now and even if PDA is not in a diagnostic manual that doesn’t prevent any one who is a professional from researching the information that is available, having an open mind and seriously considering if any of children that you come into contact with would benefit from the diagnosis and strategies that PDA offers.

New resource page

The following Resource page, very kindly compiled by Graeme Storey, is a one stop shop for everything that you need to know about PDA.  If you are the parent of an ASD child who just doesn’t appear to be typical of an ASD presentation, the parent of a child with extremely challenging behaviour or if you are a professional that is willing to be open- minded and explore the concept of PDA then please click through to this link.  You will not regret it and with an open mind you could transform lives.  The parents and children that follow in my footsteps must not go through the hell and turmoil that Mollie and I have experienced on our journey.

The PDA Contact Group is our flagship forum and group but they desperately need funds to become a registered charity.  When they become a registered charity they will be able to apply for much needed grants and funding.  Long term we are hoping that the PDA Contact Group will be able to update their website, grow and evolve in line with the increasing amount of members and awareness, provide parents and professionals with more support and information and eventually become, to families affected by PDA, what the National Autistic Society is to families affected by Classic Autism or Asperger’s.  Please show your support to the PDA Contact Forum by making a small donation, details can be found here.

Take the SEN reform awareness survey and grab a chance to win!

Debs writes...

sen reform special needs jungleOver the past 12 months, we have received a deluge of questions and queries about the SEN reforms.  From this, we can only assume that the word is not getting out to parents (or practitioners) about the changes that are coming.

As we don’t like to assume anything (the words “ass” “u” and “me” spring to mind), we wanted to find out exactly how much you do know about the  SEN reforms including the proposed Education, Health & Care Plan, the Local Offer and Personal Budgets.

We have put together a survey – SEN Reforms: How informed are you?

Please take a few minutes to let us know what you know.  There is the option to add additional comments if you wish to some of the answers, but this is not required. We just know that many of you have a lot to say!

Anyone completing the survey has an opportunity to enter into a prize draw to win one of five copies of the E-book version of Tania’s “Special Educational Needs – Getting Started with Statements“.  You can download it in most formats or PDF if you don’t have a e-reader or app.*

We will publish the results along with posts answering some of the questions.

Please share the survey with as many friends and colleagues as possible – it would be really good to get a national view.

Access the survey in your browser here or go to our Facebook page and take the survey there

 

*Make sure you enter your email address to be in with a chance to win. 

Ebook winners will be chosen at random after the survey has closed at 5pm on 12th June 2013 and notified by email and sent a single-use only download code for the ebook from Smashwords. You may, of course, donate your winning code to someone else instead of keeping it for yourself, but it is only valid for one download. The ebook may not be transferred to anyone else after download.

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

Working with parents as partners – a practitioner’s top tips

Debs writes…

The Children and Families Bill, currently working its way through parliament is very big on practitioners in education, health and social care working in partnership with parents – or “co-production”.

Now, this is clearly a fine goal, but it is going to require a shift in attitudes on all sides and an extensive programme of re-training in some quarters as well. For some, it will be easier than for others and there are already examples of great practice that need to be identified and held up as examples for others to learn from.

If you search the web, you will find several parent views on co-production but we thought it would be useful to get the views from a practitioner (we used to call them professionals, but then, what does that make us?) about the challenges, issues and positives of co-production.

Phil Brayshaw

Phil Brayshaw

Phil Brayshaw is a registered nurse for people with learning disabilities and has post-graduate qualifications in child mental health and family therapy. He has worked in health and social care for over twenty years and until recently, was the lead commissioner for disabled children and young people for NHS Calderdale. Phil also led Calderdale’s SEND Pathfinder work before moving to NHS England in April 2013.

We thought he was an ideal person to ask about co-production from the ‘other side’.

****

I was really chuffed to be invited to write about working alongside parents from a practitioner’s perspective. As an NHS employee however, I’ve been asked to say that my ‘top tips’ reflect my own views and not necessarily those of either NHS England or NHS Calderdale.

Writing a guest post is new to me, as co-production is to so many of us, and I had a few false starts but I persevered – and that is the key to trying anything new. So, here are my ‘top five’ points to remember.

If you have any questions, leave a comment and I will do my best to answer.

1.     Don’t be afraid to try new things and if they are tough…KEEP GOING!

Co-production is about more than not doing the same things that we have always done, but doing new things together. It’s about talking to each other and working together to find brand new ways of doing things. Doing things differently can be tough, but don’t give up – after all it is better to write a dozen opening lines than none at all.

2.      Be clear about what you want or what you want to achieve

Having meaningful conversations is so much easier if we are all talking about the same thing. People often talk about shared goals and ASPIRATIONS, but these are not always easy to agree on or describe. My advice is to always start with the end in sight. You could try asking, “What would success look like?” In Calderdale, we found the best answers to this question come from children and young people themselves.

3)      Get a sense of what other people need to ACHIEVE and help them achieve it.

Shared aspirations and goals are essential to co-production. There is little point in working together if we are not all heading in the same direction. That said there are often a number of different priorities for families, communities and the various organisations. It can be useful to understand what other people need to achieve, within their families or professional roles.  Helping someone to achieve their objectives often frees up some of their time to help you meet yours.

4)      Learn to TRUST – be open and honest.

If we are going to work together we need to learn to trust each other. In my experience people generally want what is best for children and young people. Believe it or not professionals don’t come to work just to make your lives more difficult [honestly] and parents aren’t unreasonable and difficult on purpose! There is no question that the current system is adversarial and there is little wonder that we are all a little suspicious of each other. Trust will take some time and effort.

5)      Ask for help (and act on advice)

It is okay not to know all of the answers and it is equally okay to ask for help. We are all very LUCKY to have such a wealth of experience around us – in families, communities and services – we need to get much better at using it; And whether you are in a family, community or a service, it is important to remember – it isn’t always the professionals that have all the answers or solutions.

So, SNJ friends, would you like to hear more from Phil?  What would you like him to write about?  We would love to hear your thoughts on this post.  As Phil said, he is happy to respond to any comments and questions below.

You can also contact him directly via Linkedin or @PhilipBrayshaw on Twitter.

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.

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

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

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:

***

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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Key Working : Whose Job Is It Anyway?

When the SEND Green Paper was launched in March 2011, the Department for Education said they would “test the role of key workers”.

Several parents approached our parent-carer forum in Kent asking “What is a key-worker”,  “Can we choose the  key-worker  if we are involved?” and “Can a key worker be employed by the Local Authority and be truly independent?”

Confused by Key working?You're not alone...

Confused by Key working?
You’re not alone…

Eighteen months later, parents are still asking the same questions and practitioners are, understandably, asking “Is this another task for me on top of my existing, increased, workload?”

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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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