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?

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)

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.

A spin around The Autism Show

Last Saturday, Debs and I visited The Autism Show at London’s Excel. Poor Debs fell over the dog a couple of days earlier and has her wrist in a splint so my long-suffering husband, Marco, came along as chief wheelchair-pusher and photographer, so thank you to him for putting up with my constant requests to go, stop, get closer, further away and turn left and left (I can’t remember right).

It was great to put faces to names and we excitedly foisted lots of our brand new SNJ pens onto people whether they wanted one or not.

We had an interesting chat with Mark Hayes from Autism Eye which is a great publication – free copies were available at the show. The magazine is also available as a digital download as well.

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Tania, Anna Kennedy, Debs

It was a whistlestop tour as I had to dash back to watch Son1 play bass in the school Jazz Band at a local Fayre  (they were splendiferous, if you like jazz take a peek at this. You can’t really see Son1, he’s the blond kid right at the back). Because of this we didn’t get time to see the Autism’s Got Talent show, but we did meet and have a chat with its founder, the tireless Anna Kennedy. Among her many achievements, Anna has started her own autism school, published a dance DVD for people with autism and hosted many, many events to improve the lives of young people with ASD, as well as having her own special needs children.

IMG_0961

Peter from SEN Mag, Tania & Debs

I was also delighted to meet in person, Peter Sutcliffe, the Editor of SEN Magazine. I have written for SEN Magazine in the past and subscribe myself – it’s a great source of information and ideas!

The award winning team from SEN Assist were also there. They make educational software for children with SEN and Adele, the company’s founder also works at Freemantles Special School, so she has plenty of young people to test her products on!

There were lots of stands with interesting resources, specialist schools, sensory equipment, legal services, and even products made by young people with autism from LVS Oxford. They teach their students real skills they can use in adult life, which of course, brings with it increased confidence and self-esteem. I bought some of their lavender sachets, my favourite scent (very old fashioned, I know!) Son2 decided when we got home that as he is a fan of lavender as well, I must have bought them for him. I have not seen them since but his room is smelling suspiciously fragrant.

IPSEA were on hand to give free advice in private cubicles and there was a big presence of course from the NAS and Ambitious About Autism

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Evelyn Hope Ashford & Debs

One great resource we will be featuring in more depth soon is Advocacy Service, Education Equality founded by Evelyn Hope Ashford. It is a low-cost advocacy SEN service and their advocates can also accompany you to meetings, tribunals and so on. Check out their website for more information.

We met so many amazing people in such a short amount of time! I really think the world of special needs is blessed to have so many energetic, dedicated and just bloody amazing people working to help children with SEN/D. Many, if not most of them are in the sector because of their own direct experience as parents of children with disabilities.

Finally, I end the post with an apology. I was due to co-present with Debs at the Wordswell Towards a Positive Future conference this Thursday. Unfortunately, I have realised after the weekend’s activities of Autism Show, Fayre and supermarket (how very dare I!) left me too exhausted to move on Monday, that it’s just not possible for me to manage the demands of travel and a day long conference. EDS and PoTS strike again!

However, Debs will be holding the SNJ fort and she has a brilliant presentation about parental co-production. I understand there are just a few places left, so if you are near London or can travel, tickets are just £30 for parents including lunch – and the chance to meet Debs of course and grab an SNJ pen – who could resist?

Other presentations will be from IPSEA’s Jane McConnell and Child Psychologist Charlie Mead, both of whom I am very sad to be missing. I am a great admirer of Jane and Charlie is one of my heroes for his brilliant work with vulnerable children.

If you do go, let me know your feedback – it’s a great line-up and our Debs is a complete star; I’m so proud to have her with me on Special Needs Jungle. We have lots of exciting things lined up in the next few months. The TES logo top left is a clue!

Did you go to The Autism Show? What did you think?

Evaluation of SEND pathfinder report – some nice weekend reading!

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

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

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

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

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

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

To recap:

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

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

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

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

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

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

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

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

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

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

Sayonara, School Action and School Action Plus

Debs writes….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?

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’.

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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.

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.

Pathological Demand Avoidance group bids for charity status

debroarke

Deborah Rourke with Tania

The most popular post on Special Needs Jungle continues to be about the condition Pathological Demand Avoidance

Last week I met Deborah Rourke, who wrote the post – it turns out she lives close to me so I hope we will see a lot more of each other.

There is to be a PDA Awareness Day on May 15th, and Deborah writes here about the group’s plans.

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Pathological Demand Avoidance syndrome is increasingly being recognised as part of the autistic spectrum. One group instrumental in bringing about this change is the PDA Contact Group,  a supportive website filled with contacts and information.

It has a forum where parents, carers and siblings can ask questions or simply vent their concerns. Our membership numbers over 2000 now and the forum is busier than ever with the number of enquiries for support and information is increasing.

LOGO1It is fast becoming clear that the group must consider the future and start thinking ahead. Awareness and recognition of PDA is greater than ever before and it is perhaps time for the group to develop its role in response to this change in status.
PDA may not have made it into everyone’s vocabulary, but it is on the agenda for being taken seriously by a wider range of professionals.

Our immediate aims are for the PDA contact group to become a registered charity and we are currently campaigning for 15th May every year to become PDA Awareness Day.

The National Autistic Society has put on several informative PDA conferences across the country and we feel workshops and seminars as well as participating at wonderful events such as The Autism Show,at Excel London 14/15 June is the way forward.

With help from government grants and kind donations, our future aims are to ensure accessible information is available in every GP surgery, play-centres, nurseries, schools, to further help raise PDA awareness and provide vital information across the board.

We are very excited and overwhelmed by all the generous offers of help, support, donations; it will provide us with the much needed resources to begin to provide some of the above services.

Please do not hesitate to explore our website: www.pdacontact.org.uk (a new one is on its way, to better manage the increase in demand).

You can now also find us on twitter: http://twitter.com/pdacontactgroup

Other recommended PDA information sites: http://advocate4pda.wordpress.com

http://www.cafamily.org.uk/medical-information/conditions/p/pathological-demand-avoidance-syndrome/
Supportive Facebook group: http://www.facebook.com/groups/7165353156/
National Autistic Society: http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

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.

Co-production is the key to SEN culture change

Tania writes:

Last week I spoke at a top-level conference for council Chief Executives and Leaders from the SE7 – seven local authorities across the south-east of England.

I was there as part of the Surrey pathfinder, to talk about how parent involvement had become integral to the SEN reform process. Parental participation was demanded by the government and in the Surrey pathfinder, it has become much more than just ‘joining in’.

I’d like to share my short speech with you because I know that we, in Surrey and the SE7, are among those leading the way to culture change for everyone involved in special needs & health and social care provision for children and young people.

I’m not saying Surrey has changed yet at the ‘coalface’, but a change is gonna come…

If all this is new to your school, SENCo and local authority, whether you are a parent or practitioner, please read this. As I said in a post the other day, the DfE wants culture change training to start now. But to coin a phrase – if you’re going to HAVE something different, you have to DO something different.

Let me know what your thoughts are in the comments…

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My name is Tania Tirraoro, co-chair of Family Voice Surrey. I also run a “Times Top 50” website called Special Needs Jungle that aims to help parents whose children have special needs & disabilities.

I started that website as a direct result of the experiences I had of trying to get statements for my own two sons who have Aspergers and other difficulties. It was adversarial, stressful, frustrating, at times emotional – and we had it easier than many, never having to go to tribunal.

In the five years since then, I have heard so many parents describe horrific – and hugely expensive – experiences of battling to get the help their children need. Of quite disgraceful treatment by local authorities, considering that those parents were only asking for support…

I don’t think it’s unfair to say that parents were viewed by professionals as grasping, demanding and, quite frankly, a bloody nuisance – interfering with their jobs ‘delivering’ services to ‘the client’ (in other words, children)

co-production tree

Click to enlarge. Image from http://www.govint.org

Parents have been left at breaking point, bewildered and angry as to why they should have to fight for what you would think anyone would want for any child – the right support provided in a timely manner.

You might look at me and think I’m one of the “sharp elbowed middle-classes” the right-wing press like to sneer at. But that’s not where I came from and I’m in this to help those parents be heard, who don’t even know they’re allowed to have a voice.

So. Here we are. The government decided enough was enough. Things had to change – and what was more, parents were mandated to be a part of it. Imagine that. I can only guess at the gasps of horror from SEN departments across the land.

But, I have to say, and I know Susie [Campbell, Surrey’s Pathfinder Manager] will agree that- in Surrey at least–  the sky did not fall in on County Hall and it’s all working out quite nicely so far.

From a starting point of mutual suspicion that has taken time to overcome, we’ve worked to build up a relationship that has steadily improved – because we wanted it to work.

We now operate what we’re calling co-production – working together as equal partners – this is a revolution in thinking and really, it’s as it should be!

Parents representatives sit on every workstream of the pathfinder and on the Local Change Board.

I have seen guards come down over time and views shared in a measured and respectful way –  but of course it hasn’t all been plain sailing – as in any sphere, it can depend on individual personalities and it’s up to everyone to make sure this is managed.

On the whole, parents have discovered that practitioners don’t have horns and practitioners have discovered that parents have valuable insights that they may not have previously considered. This can only be for the benefit of who this process is all about – the child.

There is still a long way to go with: culture change for many within local authorities and with confidence for parents outside the pathfinder – there’s no magic wand.

But the genie is out of the bottle and when the pathfinder is over, parents aren’t going to away quietly and those with whom I work within Surrey don’t want them to – and neither does the government. We’re already involved in other work for example the Disabilities Expert Group and Gap Analysis for SEN provision.

This is going to be the new normal – But – and this is a big but – it needs to be sustainable.

Parents came into this as hopeful and willing volunteers, but now that the benefits have been realised and we are working as co-producers, local and national government need to look to how they can support the continued involvement of parents as we ALL work together to improve outcomes for children and young people with SEN & disabilities.

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So – what’s your opinion of the reforms?

And – if you’re in Surrey, see this link for our upcoming conference on the SEN & health changes

SEN reform progress report: ‘pathfinder champions’ chosen

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

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

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

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

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

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

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

Progress Report & HOC Committee

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

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

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

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

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

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

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

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

Pathfinder champions named

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

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

The pathfinders are:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Special Needs Jungle has a new LinkedIn group!

LIgroupWe have exciting news!

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

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

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

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

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

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

Join, share, contribute, make yourselves at home!

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

Early Years Development Journals from NCB

NCB-LogoThe NCB (National Children’s Bureau) website has some brilliant free resources for parents, carers and practitioners available for download.

One is the Early Years Development Journal.

“The new Early Years Developmental Journal is designed for families, practitioners and others to use as a way of recording, celebrating and supporting children’s progress. It is also for people who would like to find out more about children’s development in the early years. It supports key working by helping everyone involved with a child to share what they know and discuss how best to work together to support development and learning.

This Journal is particularly useful if you know or suspect that your child or a child who you are helping is unlikely to progress in the same way or at the same rate as other children – whether or not a particular factor or learning difficulty has been identified and given a name.”

Before you start to use the Journal, you should first read the ‘How to Use’ guide, which you can also download.

There are also specific journals for children who are deaf, visually impaired or have Down’s Syndrome on the same page.

Debs says:

“I was introduced to the Developmental Journal for children with a visual impairment by one of our Consultants.  I was asking how my son’s development compared to other children with VI because I didn’t think it was fair to be comparing his development to a sighted child.  Thankfully, our Consultant was Alison Salt (Consultant Paediatrician – Neurodisability) who was one of the people involved in helping to develop the journal for VI children.

The journal became our bible and it went everywhere with me.  We took it to assessments with Alison Salt, his VI play specialist used it to set targets, we used it with his nursery – it was invaluable as it meant we were all working together with the same information.  We were able to see what my son was able to do, what gaps there were in his development and within the journal for children with VI there are also suggestions on activities.

As a mum of a child with visual impairment, I found it really difficult at the beginning to think outside the box – so many ideas for helping a child to develop are vision based.  Look at the majority of children toys, most of them have buttons that light up to tell you that you chose the right option.

The developmental journal was so useful, it gave us ideas, a true assessment, a mutual reference for all involved and more importantly, it gave us hope.  I really cannot recommend this Developmental Journal enough.  It made me informed and therefore I felt like an equal partner.”

There is so much more on the NCB website from information, training and support, Why not bookmark the NCB website to explore as and when you have the time?

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.

Special Needs Jungle named in The Times “Top 50 Sites To Make You Smarter”

Wowzer!

Special Needs Jungle has been named in the The Times (yes the UK national newspaper) as one of its “Top 50 Websites To Make You Smarter”.

Special Needs Jungle

How amazing is that?

Thanks to Justine Roberts, co-founder of MumsNet, who gave SNJ the ‘thumbs up’ in the ‘parents and teachers’ section of the Top 50.

It means a lot, especially as I’ve recently been diagnosed with  heart rhythm condition, Inappropriate Sinus Tachycardia, which makes day to day life much more difficult as I try to keep up with all my commitments.

This is partly why I’m so pleased that Debs Aspland has come on board to contribute all her knowledge and experience of SEN and coaching and help me take Special Needs Jungle to a new level.

SNJ is, at the moment, voluntary, although if I carry a post about a commercial product, I do ask for a small donation to my boys’ special school.

I’d like to move it to a self-hosted WordPress, but I don’t have the time to make sure it’s done properly, so any advice from savvy readers would be gratefully received!

So, thanks again to The Times and Justine. You’ve made my day!

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

TanGio-phone_edited-1

He’s not a condition, he’s my boy

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

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

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

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

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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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Exciting news from Special Needs Jungle-bringing in a fresh perspective for 2013!

I have some exciting news for Special Needs Jungle for 2013!

In 2012, the site really took off and now covers a much wider range of issues about special needs and disabilities, thanks to the many fantastic guest posts that people have kindly contributed. I am aware that my boys are growing older and have a certain type of special need and I have been thinking about how to expand the parental perspective  for the site.

Last year, I met the most amazing woman, a fellow transplated Northerner with an incredible knowledge of SEN/D who also has three children of her own with a range of disabilities. Her name is Debs Aspland and she is also the chair of Kent PEPS parent carer forum. Her energy and dedication amaze me.

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My pick of parents’ guest posts on Special Needs Jungle this year

SNJ-logo smallIn the last year I’ve been lucky enough to have had many parents write about their families and the issues they face raising children with special needs. These woman have a lot to share from their experiences that can help others in a similar position and so, as the year nears an end, I’d like to showcase them here in case you missed them when they first appeared during 2012.

Charlotte’s amazing brain – a heartfelt story about childhood stroke

Charlotte Neve was just seven when disaster struck. Her mother, Leila, has had to face the ultimate horror for any parent and even now, Charlotte has a significant brain injury as a result of her stroke that they are facing with the same determination as they did in their early, dark days when even survival wasn’t assured.

Read More

Advice for SENCos – the parents’ perspective from Hayley Goleniowski

Hayley was recently invited to address a group of SENCos as the neared the end of their three year Masters’ degree course. Their tutor hoped Hayley’s experience could provide the missing ingredient to the course – that of the parents’ perspective.

Read More

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

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

Read her story:

Pathological Demand Avoidance – one family’s story

Pathological Demand Syndrome is increasingly being recognised as being on the autistic spectrum. People with PDA will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control. One mum, Deborah Rourke, has written for Special Needs Jungle about her son, who has been diagnosed with PDA and their fight for support. It’s a heart-breaking story. Please share it as widely as you can to raise awareness of PDA.

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Helping your special needs child – a mother’s story

A mum called Tanya contacted me the  other day and asked to share her story about her journey to support her disabled son with everyone, which I am only too delighted to do. Tanya has some extremely useful suggestions so I urge you to read it. Please leave your comments in the comments section so she can see them.

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Empowering parents is the goal for Pat

Pat Bolton is a parent of a young person with special needs who works with a small  team of Participation Practitioners at Parents In Power, Gateshead,  www.parentsinpower.btck.co.uk  Pat helps parents to get the support their children need.

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Resilient Parenting – A Guest post by Lesley McCall, NLP & Hypnotherapy Practitioner

Lesley McCall is an NLP practitioner and Hypnotherapist and has a child with SEN. She is experienced in helping people with parenting issues and with children who have special needs. She has some advice on how you can stay strong as you raise your children.

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What now for Asperger’s?

There’s been a lot of talk about the re-classification of Asperger’s Syndrome in the new US DSM-V Manual of Mental Disorders – in other words it’s bee ‘abolished’ in its own right and brought under the category of Autism Spectrum Disorder.

What does this really mean? Specifically, what does this mean for people in the UK? Below is an article from NHS Choices that sets it all out sensibly.

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dsmvboyAsperger’s syndrome dropped from psychiatrists’ handbook’, is the headline in The Guardian. The news is based on a press release from the American Psychiatric Association (APA) announcing the approval by their Board of Trustees of a revised fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). The DSM was first published in 1952 and is often referred to as the ‘psychiatrists’ bible’ in the US.

The DSM is essentially designed to be a ‘user manual to diagnose mental illness’ – providing US psychiatrists with clear definitions of what pattern of symptoms correspond to specific conditions. This fifth revision, which has been a controversial issue of ongoing debate among psychiatrists and medical ethicists, is due out in May 2013.

One (amongst many) of the controversial decisions taken by the panel, made up of over 1,500 mental health experts, involved in drawing up the new draft guidelines, is to remove Asperger’s syndrome as a separate diagnosis and replace it within the term ‘autism spectrum disorder’.

In the terminology of the DSM-5 – Asperger’s syndrome would be seen as being at the ‘upper end’ of the autistic spectrum disorder (ASD). That means people with this type of ASD would normally have unaffected intelligence and language development, but would have milder symptoms affecting social interaction, behaviour and language comprehension.

message about DSM-5 written by the president of the APA (PDF, 105Kb), Dr Dilip Jeste, touches on the complexities and challenges of revising an established diagnostic system, as reported in the media. These include conflicting views among experts and the under-diagnosis and over-diagnosis of patients.

Dr Jeste also says that narrowing diagnostic criteria is often blamed for excluding some patients from insurance coverage in the US, yet efforts to diagnose more patients are sometimes criticised for expanding the market for the pharmaceutical industry.

The chair of the taskforce responsible for overseeing the DSM-5 revisions, Dr David Kupfer, said: ‘Our work has been aimed at more accurately defining mental disorders that have a real impact on people’s lives, not expanding the scope of psychiatry’.

How much of an impact will the DSM-5 have on care in the UK?

Despite the media hype, the revised classifications in DSM-5 will have limited impact on individuals who receive mental health care in the UK, at least in the short-term.

Psychiatrists in the UK tend to use the World Health Organisation’s International Classification of Diseases (ICD) system to diagnose mental health conditions, rather than DSM, which is used in the US.

Also, the term ‘autistic spectrum disorder’ (and the concepts underpinning it) have been widely used in the UK for many years. However, in the long-term, it is difficult to predict the potential impact the DSM-5 will have on the future diagnosis and treatment of mental health conditions.

Earlier versions of the DSM have had considerable influence, both in the US and across the world, in shaping opinions and driving research agendas. For example, it was the publication of the previous version (DSM-4) in 1994 that helped ‘popularise’attention deficit hyperactivity disorder.

What is the DSM-5?

The DSM-5 (the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders) is produced by the American Psychiatric Association (APA) and is the diagnostic manual used by US clinicians and researchers to diagnose and classify mental disorders. The Diagnostic and Statistical Manual (DSM), first published in 1952, has undergone several revisions to take into account progress in medical and scientific knowledge and an advanced understanding of mental illnesses.

The DSM-5 is set for publication in May 2013 and will be a revision of the DSM-4 that was produced nearly 20 years ago.

According to a message from APA President, Dr Jeste, the DSM-5 reflects the best scientific understanding of psychiatric disorders and will optimally serve clinical and public health needs. Dr Jeste says ‘the hope is that the DSM-5 will lead to more accurate diagnoses, better access to mental health services, and improved patient outcomes.’

The DSM is broadly based on the classification system published by the World Health Organization (WHO), called the International Classification of Diseases (ICD).

The ICD system is used by the UK and other members of the WHO. It allows doctors to look at clusters of symptoms to form diagnoses for all health-related conditions, including mental health conditions.

The current version is ICD-10, and it is ICD-10, rather than DSM, that psychiatrists in the UK predominantly use to diagnose mental health conditions.

Is Asperger’s syndrome no longer being considered a mental illness?

Autism and Asperger’s syndrome are both part of a range of related developmental disorders, which are characterised by:

  • a person having problems with social interactions with others
  • difficulty communicating with others
  • the person tends to have a restricted, repetitive collection of interests and activities or rigid routines or rituals

The main difference between autism and Asperger’s is that people with ‘classic autism’ tend to have some degree of intellectual impairment. According to the press release, several categories from DSM-4 (including Asperger’s syndrome) will be replaced by a single diagnostic category of autism spectrum disorders in DSM-5. The following disorders will be incorporated under the diagnosis of autism spectrum disorders:

  • autistic disorder
  • Asperger’s syndrome
  • childhood disintegrative disorder
  • pervasive developmental disorder (not otherwise specified)

The press release says that this is to help more accurately and consistently diagnose people with autism. This does not mean that Asperger’s syndrome is being removed from the DSM classification system, only that it is being placed under a single diagnostic category.

Under ICD-10, both autism and Asperger’s syndrome are classed under what are known as ‘pervasive developmental disorders’ – pervasive meaning that the characteristic features of these conditions (for example, social interaction and communication problems) are a feature of the person’s functioning in all life situations.

What new mental illnesses does the DSM-5 list?

According to the press release, the DSM-5 will include approximately the same number of disorders that were included in the DSM-4.

Additional mental disorders set to be included in the DSM-5 are:

  • disruptive mood dysregulation disorder – which is intended to address concerns about potential over diagnoses and overtreatment of bipolar disorder in children
  • excoriation (skin picking) disorder – which will be included in the obsessive-compulsive and related disorders section
  • hoarding disorder – which is said to be supported by extensive scientific research on this disorder and included to help characterise people with persistent difficulty discarding or parting with possessions regardless of their actual value

What other changes are included?

The revised manual (DSM-5) will include a section on conditions that require further research before their consideration as formal disorders. This section will include:

  • attenuated psychosis syndrome – where people have psychotic-like symptoms (such as hearing voices), but not full-blown psychosis (unable to tell the difference between reality and their imagination)
  • internet use gaming disorder – essentially, an online gaming addiction
  • non-suicidal self-injury – self-harming behaviour, but not with the intent of ending life
  • suicidal behavioural disorder – a type of personality disorder that increases the risk of a person taking their own life

Disorders that will not be included in the revised manual (DSM-5) include:

  • anxious depression – a term proposed to describe mild to moderate symptoms of anxiety and depression
  • hypersexual disorder – so called ‘sex addiction’. For more information see our October 2012 analysis “Media claims ‘sex addiction is real“.
  • parental alienation syndrome – a term proposed to describe a child who ‘on an ongoing basis, belittles and insults one parent without justification’
  • sensory processing disorder – a term proposed to describe people who have difficulties processing sensory information (for example, visual information or sounds)

Other changes to the DSM-5 reported in the press release include:

  • a broadening of the criteria for specific learning disorders
  • a new chapter on post-traumatic stress disorder that will include information for children and adolescents
  • removal of certain bereavement exclusion criteria – making clearer the difference between natural feelings of grief and mental illness.

Does any of this affect me?

Until the publication of the DSM-5 in May 2013, there will be no changes to diagnoses of mental disorders. Importantly, the DSM-5 is a US publication, so its main impact will be in the US where clinicians use the DSM-5 to diagnose mental disorders.

Clinicians in the UK predominantly use the ICD-10 system to diagnose mental disorders, while the DSM classification system is mostly used for research purposes.

As mentioned, in the long-term, the new version of the DSM may have long-term healthcare, as well as cultural and political, implications that are impossible to predict.

Analysis by Bazian. Edited by NHS Choices. Follow Behind the Headlines on twitter.

Links to the headlines

Asperger’s syndrome dropped from psychiatrists’ handbook the DSM. The Guardian, December 2 2012

Fears for Asperger’s families over quality of care as disorder is dropped from ‘psychiatrists’ bible’. Daily Mail, December 2 2012

Further reading

American Psychiatric Association. American Psychiatric Association Board of Trustees Approves DSM-5 (PDF, 155Kb) (Press Release). Published online December 1 2012

SEN Minister offers assurances to parents over Bill wording

 

I’m sharing this information received from the Council for Disabled Children which I hope you’ll find interesting.

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Edward Timpson, the Minister responsible for SEN and Disability within the Department for Education, recently gave evidence to the Education Select Committee on the draft provisions of the Children and Families Bill that relate to SEN and disability.

He also met CDC and others to talk about concerns and issues. As Strategic Partner for SEN and Disability to the Department for Education CDC alerted him to the fact that parents were concerned that the reforms would erode their current rights in relation to education support. As a result of this the Minister undertook to write to parents through CDC in order to address these concerns.

The CDC has now received a letter from Edward Timpson that makes explicit the Government’s commitment to ensuring that protections parents have in the current system will be carried forward into the new system.

You can read the letter at this link

http://www.councilfordisabledchildren.org.uk

Keep Us Close – Scope’s campaign for better local disability services

The charity, Scope, which works to help children and families affected by disabilities, is currently campaigning for improvements to the Children and Families bill, which if you re a regular reader, is currently undergoing pre-legislative scrutiny. Scope Scope’s new campaign called Keep Us Close, is pushing for better provision of local services for disabled children.

If you’re interested in this subject, MumsNet have a Q&A session with the new Minister responsible for SEN reform, Edward Timpson on Tuesday so head over there to pose your question after you’ve read about Scope’s Keep Us Close campaign in this article by campaigns officer, Tom Eldon, written exclusively for Special Needs Jungle.

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Until recently, when I started working for Scope, I had very little understanding of the challenges that families with a disabled child face here in the UK. I’d just spent a year and a half working with an association of parents with disabled children in Mongolia, whose situation was almost unbelievably dire – surely things must be better here.

And to be fair, things are a lot better overall. But what I’ve found out in the past few weeks through national research and speaking to parents and support groups has both shocked me, and motivated me to get involved in fundamentally changing the system for the better.

If you’re reading this blog it’s likely you’ll already know what I’m about to say – that trying to get appropriate support and care for a child with special needs often stresses a family to breaking point. From the initial stage of getting an accurate diagnosis of one’s child’s impairments, through navigating the process that’s needed to get  a statement of special needs (often required to get access to a suitable educational environment), to finding a school that meets their requirements, everyone I’ve been speaking to has been critical of the status quo. And often, even when these hurdles have been overcome, there are many more that remain; most families don’t live close to facilities and services that meet their needs, be it education, respite care, healthcare or even play groups and opportunities for children to socialise.

One mother I spoke to found local support to be so inadequate that she and another parent abandoned the state altogether and started up their own support service to provide advice and activities. Their charity has grown, and they now support the families of nearly 2,000 children, with some of them travelling as far as 50 miles to access their playgroups and meetings – but despite this clear demand they still struggle to raise funds. And these aren’t isolated incidents – time and again I hear the same story of stress and anxiety, of complicated processes and services that fail to meet families’ needs.

A recent Scope survey found that 6 out of 10 families with a disabled child aren’t able to access the services they need in their local area; only 1 in 10 told us that the process of getting local services was simple. Survey respondents’ children travelled an average of 4,300 miles to access services each year – that’s roughly the same as driving from Land’s End to John O’Groats. 7 times. It’s robbing families of their quality time, putting strain on relationships, and often adding a huge financial burden. Families are at breaking point, and the system needs a radical change on a structural level.

So how are we trying to help change all of this?

At the moment the Children and Families Bill is lumbering through pre-legislative scrutiny (as excellently documented here on Special Needs Jungle), providing an opportunity for us to reform a system that’s clearly failing huge numbers of people across the country. Scope have been campaigning for the inclusion of a ‘Provide Local Principle’ clause in the bill, which would:

  • Ensure services in a local area are inclusive and accessible;
  • Put a duty on local agencies to introduce new inclusive and accessible services if they don’t exist in a local area.

This would mean that parents’ views, and their families’ needs,would become integral to the planning and delivery of local services, making councils work together in a joined-up way. Having this clause in the bill would guarantee, in law, that councils have to provide the services family need closer to home.

The campaign, Keep Us Close, has been really successful to date, with over 17,000 campaign postcards and emails taken at the time of writing. But we still need to push the issue harder – many of the responses we get from MPs are broadly positive but lack any real commitment to change things for the better.

If you have a minute to spare, please take our online campaign action and let your MP know that this issue is important to you – that the opportunity for reform that the Children and Families Bill provides mustn’t be squandered. There are hundreds of thousands of families across Britain who deserve better.

Right now we have a critical opportunity to feed into the content of the bill and improve the quality of life of hundreds of thousands of families across the country. We expect the bill to come into Parliament in the New Year, so please, let your MP know that you care about disabled children and their families.

Thank you.

SEN Reforms: professional views to the select committee

The Education Select Committee yesterday heard from various witnesses about the draft legislation on Special Education Needs.

Over two and a half hours, professionals gave their views about the draft bill. In this first of two sessions of oral evidence, the Committee heard from local authorities, health, SEN organisations, educational institutions and OFSTED.

A snapshot of the SEN select committee hearing

One of the major concerns that was voices by the professionals throughout the hearing, which I watched online, was the lack of statutory duty on health to ensure that they provide for the needs of children who will have an EHC Plan, even though that came with complexities and difficulties.

Peter Gray from the Special Needs Consultancy said there was an issue for parents around the fact that a single agency (the local authority) would have to enforce commitments from another agency without the authority to see it through and so any agency named to provide for a child’s needs should be duty-bound to do that.

Another issue that was generally agreed upon among the witnesses surrounded the ‘local offer’. Most believed that any local offer should be framed around a national framework to avoid the potential for post-code lotteries. This could be, for example, a national offer with a quality framework and local variation. This would mean that there would be a consistency of provision for every child with SEN, wherever they are in the country, whether or not they have an EHC plan.

It was noted that the local offer was not individualised and it need to be made clearer what was required – was it a directory of services? Would there be parental entitlement or  expected pathways and would it properly include schools and be inspected by OFSTED?

Christine Terrey, Executive Headteacher of Grays school and Southdown Junior school, said that many schools had no idea what would be required of them for a local offer and had no idea of what to put in it. Another witness said they believed that if parents knew what was available by law locally, they would have less need to pursue a ‘piece of paper’.

A third main theme was whether there should be a delay in the legislation – something I believe should happen. Kathryn Boulton of Blackpool’s Children’s Services (which is not a pathfinder authority) said she believed that there had not been sufficient time and many pathfinders are still in the recruiting phases – which I know to be true. She also said there was a lack of clarity about how personal budgets should work and that the learning from the pathfinders should be allowed to develop to allow the bill to be properly informed.

Jo Webber, of the NHS Confederation explained that the new Clinical Commissioning Groups (CCGs) should, in the main, be authorised by next April, but under the new system, provision for a child with severe or complex needs or a physical condition would need commissioning from up to eight different parts of the NHS. There was, she said, a need to seek more clarity, which would take time.

Dr Charles Palmer, from the CYP service in Leicestershire said he believed there should be a delay because expectations of great improvements to the system have been raised among parents’ groups and there is a real danger that with the budget restrictions those expectations simply would not be met. He said that in his local authority they were already restricting the range of children and young people who were being supported through the process so that they would have enough money to help the most needy children.

Another issue that was highlighted was how to proceed with the reforms, taking into consideration that delegated funding for schools was already in existence and couldn’t be clawed back because of the minimum funding guarantee. Kathryn Boulton said that funding was not aligned and uncoupling delegated funding was going to be very complicated and could lead to variances across the country. Because of the Minimum Funding Guarantee it might not be doable.

One point – very close to my own heart – was the provision of mental health services from CAMHS. As I have written before, there is a very long wait to access even an initial appointment from CAMHS, let alone the appropriate follow up care. Kathryn Brown said that the bill should include a specific reference regarding mental health services in the overarching mental health provision. She noted that mental health needs very often run alongside complex SEN and there should be a requirement for mental health provision to be outlined clearly.

Regarding the draft bill proposal for compulsory mediation, a question was raised about lack of a mechanism to provide arbitration between health and education. Peter Gray believed there should be joint accountability between health and education and a duty to cooperate.

In his evidence, Dr Charles Palmer, said he did not believe mediation should be compulsory, while Brian Gale of the National Deaf Children’s Society said that if mediation was mandatory then it made no sense that there was no statutory obligation on health to provide or to mediate and without this, there would be no improvement.

On the issue of transition, there were concerns about coordination, in that adult services do not mesh with those for children and young people regarding the ages at which services stop. Jo Webber said the extension of an EHCP up to the age of to 25 would have an impact on health service provision and costs. Peter Gray said these costs, which included admin, monitoring, provision and review costs should not be underestimated.

The reforms also raised the question, said Kathryn Brown of the costs on local authorities of moving from old to new system and great thought needed to be put into resources and capacity. Would children and young people with a statement be automatically moved to an EHCP and would people post-19 but under 25 who had ceased an educational statement need to be reassessed. The draft bill provisions do not have this clarity and the time and mechanics needed should not be underestimated.

It has been my personal understanding during our pathfinder that children with statements would be left until there was a reassessment need at a review or a transition point was reached, but this is not clearly stated in the bill.

Kathryn Brown also believed that an EHCP should be maintained for a vulnerable Post-16 young person even if they leave education, if they enter an apprenticeship or if they go into custody. The latter should be needed for safeguarding reasons.

Dr Palmer said that the timetable for an EHCP should be linked to that of NHS waiting times – 18 weeks, instead of as at present, six months from referral to statement. Additionally, through the commissioning process there should be clear children’s leads from NHS commission, through local area teams and to clinical commissioning groups to ensure that children had a clear voice at each level.

One vital issue that was raised is that of the SEN Code of Practice, a significant document for schools and parents alike. The CoP will need to be revised or completely rewritten to come into line with the new reforms but, at present, it was noted that there is not duty for t to undergo parliamentary scrutiny and this was unacceptable. Brian Gale said that the new CoP needed to be right from the start – you couldn’t risk loose ends and then find that for the first cohort of children it didn’t work, thus jeapordising their provision and having to fix the new CoP retrospectively.

Mr Gale also related that in his experience, parents do not believe the bill will make much difference because services are being cut every day and it is very difficult to convince them that against this backdrop, there will be an improvement.

He also noted that when it came to a review of a plan, it seemed that only providers were consulted and not the child or the parents and looking at issue of funding – everything is being discussed by the Schools Forum where there is no representation from parents or young people.

Regarding the definitions for SEN, Philipa Stobbs of the SEC/Council for Disabled Children, said they would like the term ‘disabled’ to be clearly included in the definition of Special Needs for an EHCP, as some children with disabilities do not need special educational provision. Any new definition must improve the professional decision-making process for when a child has SEN because at the moment, the definition was too narrow.

Other points raised included:

  • A statement used the term ‘specify’ while the draft bill, at the moment, used the term ‘sets out’ which will only give rise to wooly EHCPs.
  • An EHCP should have broad outcomes and specific objectives, for example age appropriate language, ability to eat independently.
  • Where the green paper had a broader vision, the draft bill did not deliver on that
  • There was a concern that some children with a ‘Band A’ statement would not qualify for an EHCP but there was a belief that all children with current statements should automatically do so.

I hope that in the next session there will be strong input from parents themselves. It is, I believe, scheduled for 6th November. You can watch the whole of the first session here: http://www.parliamentlive.tv/Main/Player.aspx?meetingId=11597

 

Parents on the Warpath…and other stories

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

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

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

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

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

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

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

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

On to some great stories from the week:

It’s Dyspraxia Awareness Week – be alert for early signs

The Dyspraxia Foundation is calling on families to be alert to the early signs of the condition in their awareness week campaign from 14th – 20th October 2012.

Chair of the Foundation Michele Lee said: “Many parents are unaware of the early signs of dyspraxia. It is vital families are on the lookout so we can ensure their children benefit from help and advice as soon as possible. All the research shows the earlier children are helped, the better their chances are for achieving their potential in the future. Early identification means that children can be referred for the help of specialists such as occupational therapy or physiotherapy whose input can be invaluable.”

“This year we have worked with CBeebies to develop a new early years programme, Tree Fu Tom, which encourages the development of foundation movement skills in all children, but especially those with dyspraxia. We are delighted that the series reached over 300,000 children aged 4-6 years in the first series and that parents are reporting improvements in their children’s motor skills and confidence”.

Dawn, mum of Rowan aged 5 years says “My son was diagnosed with dyspraxia by a consultant paediatrician last year. Rowan loves watching Tree Fu Tom with his younger sister and they both join in with the spells. Rowan tries really hard to master the movement sequences and takes this very seriously. He says that Tree Fu Tom is just like him!

With practice Rowan has got better at the spells and he doesn’t fall over as much. He’s also getting better at staying in one spot rather than migrating around the room, and he has started to be more aware of where his sister is when they are doing Big World Magic together

Early signs of dyspraxia can include:

  • Being late to achieve motor milestones such as sitting and walking
  • Some children avoid crawling or bottom shuffle instead
  • Frequently falling
  • Difficulty manipulating toys and other objects
  • Being a messy eater
  • Having speech/language problems
  • Slow to respond to instructions
  • Sensitivity to noise, touch and other sensory information

Dawn’s advice to other parents is “Be persistent. We felt that something wasn’t right for Rowan. He never jumped and couldn’t manage buttons or hold a pencil, but because he is a bright boy he compensated for his difficulties so they weren’t noticed by his nursery teachers. Fortunately our GP listened to our concerns and referred Rowan to the paediatrician for an assessment”.

Dawn also says: “It can be really hard to get help for young children with dyspraxia and it’s so frustrating trying to get your child to do things that they find difficult. We are so lucky to have Tree Fu Tom which is something fun that we can do with Rowan that we know will make a difference. There are lots of wonderful things that Rowan can do and it’s important to focus on them and not what other children are doing.”

If parents of pre-school children are concerned about their child’s development they should speak to their GP or Health Visitor. Further information about dyspraxia can be downloaded from www.dyspraxiafoundation.org.uk. All the advice and guidance produced by the Dyspraxia Foundation is written in consultation with people affected by dyspraxia and checked by professionals.

As part of Dyspraxia Awareness week a survey is being launched to gather information from parents about their early experiences of trying to get their child’s difficulties recognised. The survey findings will help to develop targeted resources to enable parents and early years professionals to recognise the early signs of dyspraxia and to provide the help and support these children need. A link to the survey will be available on the Dyspraxia Foundation website during Dyspraxia Awareness Week www.dyspraxiafoundation.org.uk

The Dyspraxia Foundation is also holding a two-day conference for parents and professionals in Bournemouth on 9/10th November 2012 with renowned speakers Dr. Madeleine Portwood, Barbara Hunter and Gill Dixon. Further information about the conference and a booking form is available from admin@dyspraxiafoundation.org.uk

Deadline day for SEN select committee consultation – some views

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

I’ve seen a number of responses so far. Some are concerned about the legal issues raised by the bill, believing that it reduces the statutory protection for special educational needs and children. I have no legal expertise whatsoever and so am not in a position to offer any analysis of this, but from the position of having background knowledge from working within the pathfinder, some of those potential issues highlighted do not seem completely accurate. However, having said that, these opinions are a vital addition to the responses so that the select committee has as wide a range of opinion as possible to consider.

As a parent-carer forum, Family Voice Surrey, for which I am co-chair, has approached our response from our experience as parents of children with SEN and disabilities and from our knowledge of the Surrey/SE7 pathfinder . Our response is broadly similar to other parent-carer forums who have had the same experiences. It would be wrong for us to include any legal issues as that is not our area of expertise and simply parroting the views of others is unnecessary when they can speak for themselves.

Parts of the bill are clumsily worded, so that if you have been working on the pathfinder, you might understand what the intention is, but it has not been stated clearly or in sufficient detail and this is a huge shame. Quite possibly this is an indication of it being put out too soon with insufficient consideration of the fact that SEN is a hugely complex and broad area. This failure has led some to believe that the government is trying to strip away SEN support by the back door. Again, there may be a Mr Burns figure rubbing his hands with glee in the dark corridors of the Treasury at the prospect of saving money on the backs of disabled children, but this is quite a cynical view. Which is not to say it isn’t true.

My co-chair, Angela Kelly, and I recently took part in an interview with SQW who are evaluating the SE7 (South East group of pathfinder authorities) for feedback and we reiterated our view that the reforms will not be what they might if the pace continues as it is. Corners will inevitably be cut with the trials in some areas to meet artificial deadlines and so a thorough testing of the proposals will not have been carried out. And let’s remember who these reforms are supposedly intended for – the stated aim is that they end the adversarial system and benefit children with special needs and their families. It is not, claim the DfE, a cost-cutting exercise in itself.

But SEN is not just about statements, it is about providing the right solutions for children with complex needs, early intervention, transition, personal budgets and more. With the new EHCP, this will also bring in NHS health and psychological support from CAMHS. It is a massive undertaking and even though people are working very hard to try to make this happen, rushing it for political reasons (for what other reason can there be?) is detrimental to getting reform right.

Even the select committee deadline of today is patently ridiculous – some of the questions being asked as simply unanswerable because there simply has not been sufficient time for any trials evidence to be generated, let alone collated.

Some of the issues with the bill include the problem that only education is at present enforceable, so health and social care have no statutory duty of their own to fulfill the requirements set out in an EHCP. Which means it won’t happen. Also, the issue of compulsory mediation before an appeal can be launched is hugely problematic – it will delay the process unacceptably. And if a young person has finished education but still has health and social care needs, would they still have a plan up to the age of 25 in the same way as they probably would if they had educational but not health or social care requirements?

It is, of course, a draft bill and one can only hope that all the submissions made to the select committee are carefully considered and taken on board and the required amendments made. When the results of the pathfinder begin to filter through, further detail can be added to the draft bill. I would hope that whoever is in charge of setting the bill’s deadline would have the courage to say, “Okay, we do need more time. We were aiming for early 2014, but let’s take another six months”. Does that type of courage exist in the DfE? You tell me.

Here is a list of the responses I have come across so far, with links. If you have one you’d like to share, please leave a link in the comments.

As I find more, I will add them here. Read the draft legislation here

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The SEN draft bill: Have your say – but be quick!

The draft SEN bill is now out and will undergo pre-legislative scrutiny by the Education Select Committee. The committee last week issued a call for evidence with their cut off being noon on 11 October, but considering the questions being asked, it might be difficult for full answers to be given, considering the trials are only just about to get underway. Again, things seem, to me and many others, to be being done with undue speed.

The Committee says it may be unable to accept late submissions due to “tight deadlines”. But why are deadlines tight? Who has imposed them? Can’t this time-constrained person just say, “Yeah okay, made a mistake, have another month?” Go on, I bet you could if you really tried.

SEN lawyers are poring over the draft and are already making their voices heard about potential issues they that they believe will not benefit children. They have their chance to submit feedback in the call for evidence, as does everyone who has an interest – parents included.

Several people from local authorities and charities have said to me that the draft bill leaves them underwhelmed and doesn’t go far enough, but I am sure the DfE would say that the key word is ‘draft’ and the final bill and its regulations will be informed by the outcomes from the trials. My view, that things are moving at too fast a clip, legislation wise, for that to truly happen, has not changed. Perhaps ministers or officials should sit in on some of the pathfinder meetings so they can truly see where things are up to. I’m sure they would be welcomed. In fact, they can sit next to me; I’ll save them a seat between me and Ang, my Family Voice co-chair.

Some councils seem to be ahead of others, and the danger is that the DfE will pay more attention to them, when in fact, they may have rushed into trials without the proper ground-work having been done thoroughly enough. The whole process rather reminds me of the tortoise and the hare. I, for one, would rather have a rather more sedate and considered pace. Well, when I say “I, for one” actually, everyone else I speak to involved in the trials thinks the same as I do. That’s EVERYONE. I’m really not sure why the government, who are aware of this disquiet, seem to think we’re all just moaning minnies. I’m not talking about people who don’t want the change to happen – these are people who have committed much time, energy and taxpayer money to this on all sides and truly want an end to the adversarial way that is still, as we speak, continuing.

In fact, tomorrow, I am accompanying a parent to a meeting with an Area SEN Manager regarding funding their chosen placement – and this is for a school that, albeit, independent, is well-recognised as a centre of SEN excellence, cheaper than most LA special schools and where the LA already funds many similar children. This child is only there because he wasn’t given the help he clearly needed when the family applied, twice, in previous years and were refused assessment. I’m still hoping they’ll see sense before we have to traipse over to the SEN office. In the draft bill, equal weight is being given for parents to ask for placements at non-maintained special schools as to any other placement so, hey, here’s a crazy suggestion, why not show some forward thinking and start now?

Part of this problem, I think, stems from the fact that the pathfinder information and changes in culture have not trickled down to the people doing the day-to-day work in the LA SEN departments. In our authority, this is about to be addressed and not a moment too soon.

If you would like to give your feedback to the Education Select Committee, The questions being asked are below. Don’t be put off if you don’t think you can answer every question. Just give the feedback that you are able to. I think very few people will be able to answer every question. If you are a parent or carer of SEN/disabled children, your views are just as important as anyone else’s; more so, in my opinion. If you have found the bill too impenetrable to comprehend, try reading the letter written by the former minister, Sarah Teather, to the select committee committee as this may help you understand the bill’s clauses. There is also a guide for submissions to select committees here

General

1. Does the draft Bill meet the Government’s policy objective to improve provision for disabled children and children with special educational needs?

2. Will the provisions succeed in cutting red tape and delays in giving early specialist support for children and young people with SEN and/or disabilities?

3. What will be the cost?

4. What impact will the draft Bill have on current institutional structures?

5. What transitional arrangements should be put in place in moving from the existing system?

6. What can be learned from the current pilot schemes and how can these lessons be applied to the provisions of the draft Bill?

7. Is there anything missing from the draft Bill?

Specific

8. Whether it would be appropriate to move away from “special educational needs” and use the term “learning difficulties and/or disabilities” instead in the new system?

9. How the general duties on local authorities to identify and have responsibility for children and young people in their area who have or may have special educational needs (clauses 3 and 4) work with the specific duties in other provisions (clauses 5 to 11, 16 and 17 to 24)? Are they sufficiently coherent?

10. Should the scope of the integrated provision requirement be extended to all children and young people, including those with special educational needs?

11. Should other types of schools and institutions be included in the duty on schools to admit a child with an education, health and care plan naming the school as the school to be attended by the child?

12. Do the provisions for 19 to 25 year olds provide a suitable balance between rights, protections and flexibility?

13. Do the provisions achieve the aim of integrated planning and assessment across agencies?

14. How could the power given to the Secretary of State to make regulations with regard to the practicalities of the assessment and planning process be best utilised to achieve the aim of integrated support?

15. What impact will the new powers provided for in the clauses have on young people’s transition into adult services?

16. Should the provisions in this bill relating to portability of social care support reflect those for adults contained in the Care and Support Bill?

17. How could the provisions in the bill be used to reinforce protections for young people with special educational needs who are in custody or who are leaving custody?

Please note that submissions need not address all the questions but only those areas on which you have evidence to contribute. Where your comments relate to specific draft clauses, please identify the relevant clause clearly in your submission.

Please note: The submission should be sent by e-mail to educom@parliament.uk and marked “Pre-Legislative Scrutiny: SEN”. The Committee’s strong preference is for submissions in electronic form, although hard copy originals will be accepted. Hard copy submissions should be sent to Caroline McElwee, Committee Assistant, at: Education Committee, House of Commons, 7 Millbank, London SW1P 3JA

Each submission should: be no more than 3,000 words in length; have numbered paragraphs; and (if in electronic form) be in Word format or a rich text format with as little use of colour or logos as possible.

For Data Protection purposes, it would be helpful if individuals submitting written evidence send their contact details separately in a covering letter. You should be aware that there may be circumstances in which the House of Commons will be required to communicate information to third parties on request, in order to comply with its obligations under the Freedom of Information Act 2000.

Is your MP on the select committee?

Committee Membership is as follows:

  • Mr Graham Stuart (Chair), Conservative, Beverley and Holderness
  • Neil Carmichael, Conservative, Stroud
  • Alex Cunningham, Labour, Stockton North
  • Bill Esterson, Labour, Sefton Central
  • Pat Glass, Labour, North West Durham
  • Damian Hinds, Conservative, East Hampshire
  • Charlotte Leslie, Conservative, Bristol North West
  • Ian Mearns, Labour, Gateshead
  • Lisa Nandy, Labour, Wigan
  • David Ward, Liberal Democrat, Bradford East
  • Craig Whittaker, Conservative, Calder Valley

All Change: Back to school news with the new draft SEN bill

Back to school for most children this week, except for my boys, whose school finally returns next Tuesday. I’d better check over their uniforms this weekend and get the shoe polish out!

Big news in the SEN world this week with the draft SEN bill being published, swiftly followed by the exit from the DfE of Sarah Teather. The bill will be scrutinised by the Education Select Committee and the DfE says, will be updated as results from the pathfinders come through, whenever that may be. Over the coming weeks, views will be sought on the draft bill.

Pathfinder trials are getting underway and it’s clear there is a lot of work to be done, not only in the trials but in the eventual writing of a new Code of Practice and for all local authorities in updating their SEN publications. If you’re a pathfinder family, I’d be interested in hearing from you about your experiences, wherever you are.

Draft SEN legislation published and a response to my open letter to Sarah Teather

Well today is the day – the draft legislation has, rather unexpectedly, been published for the reform of provision for children and young people with Special Educational Needs. It had been said to have been put off until October, but that hasn’t appeared to have happened.

Towards the end of last week, I was delighted to receive a response to my Open Letter to Sarah Teather, from top DfE official, Stephen Kingdom. I had intended to publish it earlier but on Friday I had an EHCP meeting and then my day job, as PR for DysNet Limb Difference Network, had to take precedence with the Grunenthal “apology” to the world’s Thalidomide survivors, for which we’ve received much coverage. It’s had me working over the weekend since Friday evening.

Anyway, first the response to the open letter, then onto the draft legislation:

Thank you for your open letter of 27 June to Sarah Teather MP, Minister of State for Children and Families, regarding the pace of reform to special educational needs and disability policy.  I have been asked to reply and I am sorry for the delay in doing so.

It was very good to meet you at the Surrey pathfinder event in July, and to hear your personal perspective on the pathfinder programme and the Government’s proposals for reform of the SEN system.  Since we met, I have become an avid reader of Special Needs Jungle.  I hope you also found the opportunity to correspond directly with Sarah Teather through the Mumsnet chat helpful.  We hope she will have the opportunity to do a follow up webchat shortly, as well as continuing to talk to parents and young people through other channels.

I know you are concerned about the pace of reform and whether the Government is allowing sufficient time to learn from the pathfinders. We do understand those concerns – which I know others share – and that is why we are ensuring we can continue to feed in learning from the pathfinders throughout the legislative process.  And, of course, the legislation is only one part of the reform story – as you know well it is getting cultural change that is key.

The SEN clauses in the Children and Families Bill, which we intend to publish in September, will be draft – that is, they are intended for discussion.  As the Minister said on MumsNet, we hope that this discussion will be a real opportunity for wide range of stakeholders, including parents and charities, to tell the Government what they think.  The final Bill won’t be published until spring 2013, and it will be debated at length in Parliament before it gets Royal Assent and becomes an Act.

The Minister also said on MumsNet that some of the legislation will need to be done at a later stage.  In Parliamentary terms, this is referred to as “secondary legislation” and is usually in the form of a statutory instrument, such as a regulation.  We will, of course, be able to build in further learning from the pathfinders into this secondary legislation.  In addition, we will in due course be updating the SEN Code of Practice, which provides practical advice to local authorities, maintained schools, early education settings and others on carrying out their statutory duties.  I open this will present another opportunity to build in learning from the pathfinders.

Ministers do genuinely want the SEN clauses to be informed by views, knowledge and experience of people like yourself.  That is critical for us to get the detail right.  I hope, however, that you can appreciate Ministers also want to maintain pace, to ensure that the reforms set out in the SEND Green Paper really do bring change for children and their families who have special educational needs or disabilities.  During the development of the Green Paper in 2010 and since, my team has heard from lots of parents about the frustrations they experience with the current system (and, of course, you are all too aware of these as well).

I hope this response is helpful, and thank you once again for taking the time to write.

It’s very nice to see that SNJ is read in high places and so if you feel there is any issue surrounding SEN that I haven’t covered that should be highlighted, do let me know.

I was very interested to see cultural change mentioned – having had two recent experiences of parents in my area who have received shoddy treatment at the hands of SEN panels. It is quite disturbing to see that even while we are working to improve things with the reforms, staff at lower levels in the LA feel it is acceptable to keep on as if it was the bad old days.

The draft legislation, published earlier today, will require some digestion. You can download it for yourself here. It’s going to take some reading, at 65 pages, so I’m not going to comment too much today other than to highlight the following regarding assessment:

The local authority must secure an EHC needs assessment for the child or young person if, after having regard to any views expressed and evidence submitted, the authority is of the opinion that.

(a) the child or young person has or may have special educational needs, and

(b) it may be necessary for special educational provision to be made for the child or young person in accordance with an EHC plan.

Now, I can already see a problem – first of all, no one would ask for an assessment if the child clearly didn’t have SEN, or if earlier attempts to help the child had not already taken place so it’s a bit of a moot point. But the rub is in b). As it stands, so far, the proposals are that when an agency (parent, school, nursery, health visitor etc) refers a child for an assessment, a multi-agency meeting is supposed to take place where it is decided if anything needs to be done at that stage, or if the child’s needs can be met from the local offer (what’s available locally) or if an EHCP assessment is needed.

So who is going to make this crucial decision about whether to assess? Unless there is clear and complete cultural revolution within LEA mid and lower level staff, nothing will change and in order for parents to have confidence in the new system, this decision-making process will need to be totally transparent. At the moment, you get a yes or a no and maybe one line about why (if you’re lucky), but a parent has no idea what went on in the panel discussion. Having the proposed key worker involved to represent the child at that meeting would go some way to making sure that all documents are present and that the best decision for the child and not just the LA, is being made.

One further, and quite startling point, for now – the draft bill states that when an EHCP is to be drawn up the parents can ask for a place in an independent special school (non maintained special school). This is a huge step forward, if I’m reading it right. There is, of course, a get-out clause – the old “efficient use of resources” line that’s currently in the current system and so this really needs a closer look, because how can you give parents a right to name an independent special school if the LA then comes back and says, well we don’t want to pay for that because we don’t think it’s an efficient use of resources?

There is much to be digested this evening but at first scan, there’s also much room for improvement. Expect more on this in the next few days.

Sarah Teather is doing a live webchat over on MumsNet tomorrow at 1pm.

Special Educational Needs reform update

Hope your summer is going okay! We’re just back from Italy where we were devoured by relentless mosquitos day and night.

Just thought you might like to read this pdf of the June 20th Select Committee on SEN at which Sarah Teather spoke about the SEN reforms. I wrote about it here but now the transcript has been published, so I’m putting it here for you to read in full, including the views of five experts including Jane McConnell of IPSEA.

This September, pathfinder trials will be getting underway, although in many areas, the thorny subject of who the key worker is still under discussion. If you’ve been approached to be a pathfinder family, I’d love to hear from you. Alternatively, if, like me, you’re a parent involved in the pathfinder development, let me know your views on the process.

There will be another update from the DfE at the end of October but if you’re interested with the process, reading this document will be informative.

Free dyslexia webinars for back-to-school students

A free four part webinar series Academic Success & Dyslexia: Back To School Webinar Series!is starting on 23rd August aimed at helping dyslexic students succeed when they head back to school in a few weeks

It’s being run by Patrick Wilson, who has been working with dyslexic students since 2003. A dyslexic himself, he founded the Tutor Crowd to help SEN students do better in exams. His particular teaching focus is dyslexia.

Patrick believes that low achievement is not the result of low ability it is the result of ineffective learning. He has developed a specific way of teaching dyslexic students that aims to help them work more effectively. He has previously been featured in The Times and The Daily Mail.

Today, he tells Special Needs Jungle about his service.

**

I got involved with tutoring SEN students because of my background as a dyslexic. In education I found I was constantly coming up against brick walls, and in order to get through school and university, I created techniques and learning models to get the grades. It’s been a natural progression for me to pass on what worked to other dyslexics. I’ve had some great successes with SEN students and it’s good to see people who have struggled academically start achieving.

What’s important for SEN tutors is that they fully understand the student’s SEN. I think that knowledge can sometimes be easier for a teacher with personal experience of the issue to communicate. What I feel happens a lot in SEN teaching, is that lessons focus on the correct objectives, things like organising and structuring. However, if the teacher hasn’t truly understood the students SEN in the first place, the student will walk away without having achieved or learned anything.

I use a lot of different methods when I’m tutoring. I’m an advocate of action based learning for dyslexics, and I focus on creating a relaxing stress free environment, where mistakes are seen as a good thing. I also recommend providing a constant feedback loop for students. Very often a dyslexic will put a huge amount of effort into a project, only to be told at the end that it is not right. That is disheartening and can potentially put the student off learning permanently. By providing constant feedback, the student can improve bit by bit without becoming disheartened.

My advice for worried parents is to do your research. It’s really important you get up to speed with the specific SEN issue that your child has. Understanding should allow you to work with your child more effectively and reduce the emotional issues that can occur in a parent- ‘SEN child’ relationship.

The Tutor Crowd is an online platform that connects you to great tutors. Instead of only being able to work with local tutors, you can work with a tutor from anywhere in the country. For example, you may need an economics tutor that specialises in dyslexia. Our platform gives you the opportunity to find a tutor that’s an ideal match for you. We also have very strict entry criteria for tutors. Only the very best tutors are allowed on the site. We also use a rating and feedback system so parents can have complete confidence that a tutor is top quality.

The webinar is a free 4 part series about understanding and working with your dyslexia. It’s for anyone with dyslexia who wants to achieve academically, as well as for parents and educators who want to engage, teach and build better relationships with their child or student. Click here to register.

Dyslexia in the wrong situation can be a soul destroying problem. However, in the right circumstances, and with the right learning techniques, dyslexia can be an incredible asset and a very powerful way of thinking.

SEN and disability stories you mustn’t miss

The summer holidays may be underway but the silly season for news certainly doesn’t seem to have arrived as far as news and great blogs go. Although, as this is Olympics year, we may miss it altogether. I’m especially pleased as the Olympics brings some old and sorely-missed friends into town to cover it for various news organisations.

In special needs this week, there have been a number of notable stories, including the school exclusions figures. the BBC ran on the angle that there was an 11% drop in exclusions across the boar and, while this is of course welcome news, it’s much more worrying that pupils with statements are nine times more likely to be excluded than a pupil without SEN, a fact that news organisations seem to think is just par for the course. Now remember, this is statemented, not just SEN kids, so these are children who are supposed to have statutory help in place to enable them to achieve. Does this indicate that many are simply n the wrong school environment or that their statements are either inadequate or not being properly implemented? I really hope someone with the right resources (yes, I know, what are resources?) looks into this more closely.

There are also a few great blog posts from Chaos in Kent, Lynsey Mumma Duck and Place2Be, so do check them out. Also, if you’ve read or written something fab this week about special needs, leave the link in the comments for me!

Food for thought: some great special needs posts and news this week

It feels a bit surreal, being Friday already. Long weekends do that, don’t they? And yet a whole week must have passed because there have been all these great stories. It’s been a great week for thoughtful special needs posts too.

Finally, don’t forget there are still some parent bursary places left for the SEN conference in Newbury next weekend. See the link in the list below. If you come, make sure you say hello!

Jubilee round up of special needs stories!

Me with Sons1 & 2 

Ah, the Jubilee weekend is upon us. We’re having a barbecue with our lovely neighbours, so I hope it doesn’t rain. They’re moving soon – I just hope the new people love walking our dog as much as the Smiths do! I’m going to try to have the weekend off and do no ‘computering’. This may be unpleasant torture though… we shall see. I still have my iPad. Plus it’s my birthday on Wednesday. I’m hoping my kids on half-term will wait on me hand and foot. Well, you can dream!

Have a fab bank holiday weekend, all, and thanks for your continued support for Special Needs Jungle.

SEN Green Paper response round up and other special needs stories

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

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

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

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

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

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

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

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

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

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

Great special needs stories, blogs and a cute dog too

For the first time this week, I’m alone in the house, apart from Leo the Labradoodle, currently sulking because he had to have a bath after rolling in something revolting. I haven’t told him yet it’s his anti-flea treatment day too, which he’s also not keen on. Everyone but me has had the flu (man flu of course). As a registered carer, my GP gives me a free flu jab so I have managed to avoid it. This is just as well as I’m flat out preparing for the main launch of  DysNet, the new network for people affected by limb differences for which I’m PR & Community Manager.

And so, exhausted, I bring you my weekly round up of recommended special needs stories and blogs that I’ve seen this week. It just remains to say a huge thanks to all who voted for me in the BritMums awards, because I’m now going to have to find a nice frock as SNJ has been chosen as a finalist!

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

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

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

The SEN key measures announced yesterday were:

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

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

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

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

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

Home educating a child with special needs

Many parents who have children with special needs seriously consider home educating their child. It throws us lots of issues – especially if they are statemented. Today. home education expert, Fiona Nicholson, who has given evidence to government committees on the subject of elective home education, talks to Special Needs Jungle about these issues and how to go about teaching your SEN child at home.
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Some parents decide when their children are very young that school is unlikely to meet their needs. But most children who are home educated did go to school for a while first. When it comes to the crunch, many parents feel they have no choice but to home educate because of problems in school, especially when children are bullied. Children with special needs are often singled out because they are different.
Fiona Nicholson, Ed YourselfThe school day can be very long for a child with special needs and children always come home tired or angry. Many parents say it’s less tiring to home educate because they can go with the flow more. It may mean that parents have to give up their job in order to home educate, so I do get asked a lot of questions about the benefit system.
Children with special needs have an equal right to be educated at home. A significant number of autistic children are home educated and the National Autistic Society has information on its website about home education.
One parent told researchers: “the number of HE families in the UK is growing rapidly, as many are literally forced to it by bullying in the schools that the school system can’t/won’t protect their children from, and/or by the failure of the schools to decently address special needs. We are one such family, and know many others. We are not choosing home education as an alternative lifestyle choice, but have been left with no other acceptable option.” Another parent commented “regrettably, we would never have considered home ed until forced into it because of bullying. We now wish that we had always home educated her.”
Home education isn’t a decision which is taken lightly. Parents are anxious about how children will make friends and they do worry about whether they are keeping children wrapped in cotton wool or protecting them from the real world.
In fact there are many social opportunities for home educating families. The internet is widely used by parents to link with others in their area and nationwide. There is also a thriving internet community specifically for home educating parents with special needs children. Parents who are just thinking about whether they could possibly manage to home educate and what it actually involves can join and ask questions from parents who have already made the transition.
If the child is a registered pupil at a mainstream school, the parent  wishing to home educate should send a written request to the school for the child’s name to be taken off the  school roll. You don’t have to ask for permission. It’s the same process whether the child has a statement of special needs or not. The statement will need to be modified to take off the school’s name and to say that the parents have made their own arrangements.
If the child is a registered pupil at a special school, the parent does require  consent from the local authority before the child’s name can be removed from the school roll. Some local  authorities will ask for further information about how home education will accommodate the child’s special needs.
Even when children have a statement of special needs, the local authority doesn’t have to help or provide services once the child is out of school. On the other hand, the statement isn’t enforceable on the parents, as long as they are making provision for the child’s special needs. This gives families more responsibility but more freedom as well.
In England the Department for Education has said that the local authority can claim back money spent on SEN support and the latest Government rules say this can be agreed on a case-by-case basis with the family. The total amount that the Council can claim is the same as schools receive for each pupil. However, it’s totally up to the local authority and not many have taken it on board yet. You need to be mentally prepared for the possibility that you’ll get nothing once your child is out of school.
Once parents are home educating they obviously have less opportunity to go out to work and earn a living. Carer’s Allowance is payable to people who are caring for  a child or adult receiving Disability Living Allowance at medium or higher rate. Home educating parents – including lone parents – are entitled to claim Jobseeker’s Allowance if they are prepared to agree to the qualifying terms and conditions. Home educating parents can also claim Working Tax Credit and Child Tax Credit for self-employment which can include working from home.
Links: 
My website has a lot of information about home education law and SEN and also about state benefits http://edyourself.org/