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

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

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

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

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

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

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

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

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

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

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

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

  • Visit our new website for all the latest news.    

 

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

Today is Pathological Demand Avoidance (PDA) Awareness Day

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

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

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

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

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

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

Correct diagnosis essential

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

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

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

New resource page

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

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

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

Debs writes...

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

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

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

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

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

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

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

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

 

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

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

Special Needs Jungle Drums!

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

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

Draft SEN Code of Practice: Further views

Debs writes….

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

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

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

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

2.3 Parent Partnership Services

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

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

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

2.4 Parent Carer Forums:

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

5.1 Improving outcomes for all

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

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

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

5.9 CAMHS

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

SNJ7-9The good bits?

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

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

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

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

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

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

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

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

Children and Families Bill – the missing pieces

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

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

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

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

The good bits:

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

What’s missing?

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

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

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

Tania & Debs

Ten things I wish, with hindsight, I had known

Debs writes….

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

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

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

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

Children & Families Bill published

logo_dfeThe Children and Families bill, issued in draft form last year, has just been published. Within this bill are the reforms to the way special educational needs are provisioned, including the replacement of the statement with a single Educational, Health and Care plan that will set out all of a child’s needs in one document.

The DfE said:

“Significant reforms to services for vulnerable children and radical proposals to allow parents to choose how they share up to a year’s leave to look after their new-born children have been announced.

The Children and Families Bill, published today, includes reforms to adoption, family justice, an overhaul of Special Educational Needs, reinforcing the role of the Children’s Commissioner and plans to introduce childminders agencies. It also includes the extension of the right to request flexible working to all employees.

The proposed Shared Parental Leave reforms will give parents much greater flexibility about how they ‘mix and match’ care of their child in the first year after birth. They may take the leave in turns or take it together, provided that they take no more than 52 weeks combined in total.

These changes will allow fathers to play a greater role in raising their child, help mothers to go back to work at a time that’s right for them, returning a pool of talent to the workforce. It will also create more flexible workplaces to boost the economy.

Speaking ahead of a keynote speech Children and Families Minister Edward Timpson said:

I am determined that every young person should be able to fulfil their potential regardless of their background. For this to happen we must tackle the disadvantages faced by our most vulnerable children and families. Our measures in the Children and Families Bill do just that.

In this Bill we will overhaul adoption – breaking down barriers for adopters and provide more support to children. We will reform family justice – tackling appalling delays and focussing on the needs of the child. And we will improve services for vulnerable young people – transforming the Special Educational Needs system and better protecting children’s rights.

The Bill will include provisions on the following reforms:

  • Adoption Reform: the Government wants to reform the system so that more children can benefit more quickly from being adopted into a loving home.
  • Children in care: educational achievement for children in care is not improving fast enough. The Bill will require every Council to have a ‘virtual school head’ to champion the education of children in the authority’s care, as if they all attended the same school.
  • Shared parental leave: the Government will move away from the current old-fashioned and inflexible arrangements and create a new, more equal system which allows both parents to keep a strong link to their workplace.
  • Flexible working: the Government wants to remove the cultural expectation that flexible working only has benefits for parents and carers, allowing individuals to manage their work alongside other commitments. This will improve the UK labour market by providing more diverse working patterns.
  • Family Justice: the Government wants to remove delays and ensure that the children’s best interests are at the heart of decision making.
  • Special Educational Needs: the Government is radically reforming the system so that it extends from birth to 25, giving children, young people and their parents greater control and choice in decisions and ensuring needs are properly met.
  • Childcare reform: the Government  is reforming childcare to ensure the whole system focuses on providing safe, high-quality care and early education for children. The Bill introduces childminder agencies which will enable more flexible childminding and removing bureaucracy so that it is easier for schools to offer ‘wrap-around’ care.
  • Children’s Commissioner: the Bill makes the Children’s Commissioner more effective by clarifying his or her independence from Government with a remit to ‘protect and promote children’s rights’.

We’ll be looking at the bill in detail and will bring you views and analysis during the week.

The DfE announcement can be read in full here,

To read the bill and a summary of it, go here

A morning with Monty, a very special boy.

My good friend Angela, who is my ‘co’ in co-chair at Family Voice Surrey, always has an air of unflappability. I’m not quite sure how she does it.

As well as being the parent of two sons with ASD, she is studying to be a psychologist. Angela’s younger son, Monty, is a delightful boy who attends a special school. But his ASD means that, like other children with autism, he has a schedule and a sense of reasoning all of his own that can be exhausting.

Here, Angela writes for SNJ about a morning with Monty.

***

In the distance I can hear screaming. It sounds terrifying and it’s coming closer.

(more…)

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.

(more…)

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?”

(more…)

SNJ is the new SEN site expert on NetBuddy!

NetBuddy logo strap_V1[1]I’m delighted to tell you that I’ve been asked to be the new SEN site expert for Netbuddy.

Netbuddy offers practical tips from people with first-hand experience of learning disability, autism and special needs. It’s a great resource and I’m really pleased that they’ve asked me to join their team of advisers. (more…)

Son1 is 15 today-and proof that the right support can work miracles

Today is the International Day for Persons With Disabilities, which will be marked worldwide. It’s also Son1’s 15th birthday and I would like, today, to offer a message of hope for parents of children with behavioural problems and Asperger’s who are worrying what the future may hold for their children.

Son1 - All rights reserved

Aged 7

When Son1 started school, we already knew that it was not going to be an easy ride. Fiercely intelligent and sporty with a bright blonde mop of hair, we still hoped for the best. At pre-school, the undertrained staff had already shaken their heads at his unwillingness to go along with everyone else. If he couldn’t have the colour cup he wanted, he would rather not have the drink. He would tear around, regardless of who was around him.

Within the first few terms of reception, he had a behavioural chart. He couldn’t bear to be anything but first in the queue and if something went wrong, he would sit under the table and refuse to move. He found it impossible to see others’ point of view; on outings he was a danger to himself. Making and keeping friends was another issue. Needless to say, this all had an impact on his learning.

He loved football but would often sulk on the sidelines if he couldn’t play where he wanted. At home he would have rages, was often uncontrollable and nothing we did seemed to make any difference.

Needless to say, we were drained, stressed and desperate to help him. I even helped in school twice a week to make sure I knew what was going on there. My husband became a team football coach – something he still does – to support him.

So, lacking any useful help or advice from school, I got wise, did my research, got a referral to a paediatrician and discovered what the problem was – Asperger’s with Hyperactivity. I worked really hard to get him the statement he needed to support his social and emotional needs. We tried and discounted medication; we tried a different diet. This was against a backdrop of having a younger son with medical, social and educational needs for whom we also had to find a solution.

And find it we did.

For the last five years, as you may know, both our boys have been at the most fantastic independent specialist school that is designed for bright boys who find it difficult to learn in a mainstream setting. They may have dyslexia, dyspraxia, increasingly Asperger’s or another learning difficulty. Schools like this are few and far between and, as far as I know, there is no comparable girls’ school. We even moved house to be closer for the daily school run.

Son1, now he has been getting the right education in the right environment, is growing into an independent, clever, thoughtful young man. He has a love of, and a talent for music. He has a sense of humour. He still has his impulsiveness and stubbornness but he listens to reason – as long as you don’t ram it down his throat. Best of all, he has friends.

Some of this is down to growing up in a stable home with a family who work hard to make sure that he has what he needs – which is not always the same as what he wants. But mostly it’s the intensive input and care from the experts in the Learning and Development Centre at school

Son2 winning Chairman's Player of the Year for 2012

Son2 winning Chairman’s Player of the Year for 2012

I’m telling you this because I know very well that there are parents reading with younger children who are still at the ‘before’ stage. Who may be wondering where to turn, who can help them or if their child will ever have the kind of life they had envisaged for them. They will have faced disapproving looks from parents at the school gates and from teachers who are not trained in either recognising or supporting this type of child.

On this Day of Disabilities, I also think of those children with such severe difficulties that they may never reach adulthood, or who will be dependent on their parents or on medical care for as long as they are alive. And I realise that we are lucky. Our younger son does have medical difficulties that we have been struggling to get to grips with and this is hard, with an uncertain future, but we have experience enough now to know that we will cope.

This is not to say that some have it worse so you can’t feel bad – no one can tell you how to feel and when we see our children suffering it is devastating, whatever their condition.

But for boys like Son1, there is a solution. It takes lots of work, determination, strength and persistence – for them, you and their school. As further proof, this year at his football club, he won the Chairman’s Player of the Year Award. He played in goal for two seasons to benefit the club, even though he prefers being a striker.

My message to you is do not give up. Keep looking until you find the right solution. Get educated, get help – for your child and for yourself – but above all, believe that the future will be better.

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

Minister, Edward Timpson at the Select Committee today

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

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

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

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

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

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

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

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

Extension of pathfinders

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

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

Which is very handy, it seems to me.

Mediation

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

Transitioning to the new system & legal status

The parent and service user panel

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

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

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

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

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

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

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

Code of Practice

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

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

Local Offer

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

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

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

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

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

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

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

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

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

The draft SEN reform bill – some reactions

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

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

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

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

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

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

The very excellent Jane McConnell of IPSEA said,

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

NASEN’s Lorraine Peterson meanwhile said,

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

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

The NAS said,

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

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

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

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

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

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

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

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

August’s top bank holiday SEND stories

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

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

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

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.

Autism updates, SEN stories and happy holidays!

My top story this week is just out – a 90,000 drop in the number of children identified as having SEN. Do I think that SEN is on the decline? Of course not. The report in the TES says, “Brian Lamb, who led a review of parental confidence in the SEN system for the last Labour government, also identified training and funding as key reasons for the drop. But he said that the most important question to ask was whether children’s needs were being met.

“It’s positive to see a fall as long as we can be sure this is because of better assessment and the removal of perverse incentives,” said Mr Lamb, who is now chair of the SEN charity Achievement for All. “I hope the fall is not because schools are not addressing special educational needs.”

This is a point that I agree completely with and was my very first thought. Read the rest of the article for yourself and draw your own conclusions.

Also in this week’s top stories include using pets to help kids with autism (something we all already knew as well) and Barnardo’s report about tackling the causes of bad behaviour and not just the symptoms – this is an issue I have written about myself before.

I also want to highlight this week’s SNJ Guest post, from Rob Pleticha at EURORDIS, the European rare diseases organisation, who regularly volunteers at camps for children with serious illnesses. The one he’s written about is Barretstown in Ireland. If you have an 18+ year old lounging about at home or on a gap year, they could do a lot worse than be a volunteer at a camp like this – and it would look great on their CV too!

So, I’m away for a couple of weeks so no round-ups until I get back, but I’ve scheduled in some great posts while I’m away to keep you company and I’ll be armed in Italy with wifi and an iPad…Happy holidays!

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. Here’s her story:

***

After years with my son struggling with his reading and writing and being given the impression that he was lazy in class, in Nov 2009 at the age of eleven, he was given a coloured overlay by a teacher at his Primary School.

After I questioned him about this, I was shocked and extremely surprised to find out that when he looked at a page of writing it moved around the page. My son has Visual Stress, the movement of letters on a page of writing and there is a fairly long list of symptons that are associated with it.

I spoke to his Optician who confirmed that my son has Visual Stress, Visual Stress – Meares Irlene Syndrome, Scotopic Sensitivity Syndrome, or Visual Dyslexia the different names I have heard it called. He has to have two pairs of glasses one for everyday use, i.e. going out  and a coloured pair for his educational needs.  He also has severe long-sightedness.

Precision-tinted Lenses are only available by private prescription and the cost can vary from area to area by quite a considerable amount.

I got in touch with the local Primary Care Trust and after about 6 months I finally managed to get a second voucher issued for his distance vision to be put into his tinted lenses. This is also now done for all the children in my area who suffer from Visual Stress.

I have also been in touch with my MP.   She wrote to the Secretary of State for Health and the Chief Executive for NHS in my area.  The replies basically told me what I already knew about the vouchers for children etc. I do not feel that the question of extra funding for the vision of these children was answered at all.   Basically I felt as though i was being swept under the carpet.  [Currently vouchers will not cover the cost of tinted lenses – only the prescription lense]

My MP wrote to the Group Director for Social Care and Learning. His reply gave me the impression that he didn’t have a clue what I was talking about. I then sent an e-mail direct to the Group Director of Social Care and Learning, begging of him to do his homework and find out more about this condition. I sent him two examples of Visual Stress so he could see for himself the reason’s behind these children struggling so much with reading and writing.   Once again I received a reply stating what I already knew, with no offer of looking into this more.

I also got in touch with the Education Dept. for Disabled Children.  They then referred me to The Visual Impairment Coordinator for my area. She told me herself that what my son had wrong with his eyes is not dyslexia. She described it as Scotopic Sensitivity Syndrome or Visual Stress. Even she had to research Visual Stress before she got back to me.   She told me not to force my son to read as the stress he feels, makes the stress on his eyes worse and therefore the Visual Stress symptoms get worse.

When my son first started year 7 he had a reading age of 7.2 years even thought he was 11 years of age. Now at 13 years and year 8 he has the reading age of 9.5 years. [this is an amazing achievement!] I was told by my son’s school that the Education Authority in my area would not issue my son with a Statement of Educational Needs.   So I went directly to the Head of SenCo in my area.  I told them that he needed and I wanted him to have a Statement of Educational Needs.  He was assessed and It took approximately three months for him to be issued with a Statement.

The school were very surprised that I had managed to get a Statement for him.

I was told that my son also had dyslexic tendencies I asked the school about getting him assessed; they told me that my Education Authority didn’t recognise Dyslexia as a learning disability. I told them that I wanted him assessed. Strange that if my son goes to College or University all of his sight problems will then be recognised.

In the mean time I have started a group on Facebook called Parents of Kids with Visual Stress.   This is where all our members can discuss the problems that they are having and also get ideas of how to tackle things from other people. We are also there to support each other with our fight.

I also have an e-petition running for the funding of tinted lenses for visual stress.   I need to get 100,000 signatures for it to be discussed in Parliament. The more votes that we can get the quicker the help can be put in place to help our children.

So far it has felt as though I am being pushed around an ever increasing system of managers etc.  Yet not one of these people are able to tell me if my son can get any help towards funding the glasses he so obviously needs. Without these tinted lenses my son will never be able to read and write at the same level as his peers.

The week’s scoop on special needs and disability stories

Today (Friday) is a day full of SEN green paper meetings for the Surrey pathfinder for me and tomorrow it’s the long-awaited Towards a Positive Future SEN conference for which there are still a few bursary places available for parents.

All that’s left is to choose what to wear – and as I’m not very good at this sort of thing, it’ll probably be the most challenging part of the whole thing. Next week I’ll be at the finals for the BritMums Brilliance in Blogging Awards for which Special Needs Jungle is a finalist, so I expect you’ll find me searching the rails at the Posh Dress designer exchange shop in Farnham where they always seem to have the right thing that actually fits me.

Family wise we’ve had a week of CAMHS & cardiology visits for Son2. The consultant paediatrician spent the CAMHS session yawning and answering his phone, but at least the psychologist was sensitive and attentive and we had a satisfactory outcome, although the six month wait left a lot to be desired.

So, on to the week’s stories. Check out, if you haven’t seen it, the Pathological Demand Avoidance article by Deborah Rourke – it’s had hundreds of views this week and is well worth a read. Also have a look at my post about Son2’s raspberry Pi computer. The Padawan has become a Jedi…

Have a great weekend and don’t let the weather spoil it!

SEN child? Join me and NAS president, Jane Asher, on Sat 16 June

So, it’s just a couple of days before the Towards a Positive Future Special Educational Needs conference in Newbury – if you can make it at all, it’ll be well worth the trip.

My presentation is all written and it includes some up to date information on the pathfinder trials for the SEN Green Paper for Surrey. What I’ve found is that those commentators outside the pathfinder really know little about what is actually happening within the workstreams.

Tomorrow, I’m off to a couple of meetings for the Surrey pathfinder, including the latest for the Education, Health & Care plan. We’ll be reviewing a draft plan drawn up by the pathfinder lead, Susie Campbell who has collated lots of feedback from a previous meeting – quite an undertaking and I’m looking forward to seeing what she’s come up with. Our feedback from Family Voice Surrey parent-carer forum was quite comprehensive.

Saturday’s conference still has a few paces left and they can be boked online at http://www.wordswell.co.uk/tapf-conference-2012/booking.php

Among the keynote speakers are:

Clive Rawlings – Barrister – The Coalition Plan for Special Educational Needs: Cohesion or Corrosion?

Charlie Mead – Educational Psychologist – The Careless System

Martyn Sibley – Social Entrepreneur who has one aim ‘To Change the World for Disabled People’

Jane Asher – Actress and President of the National Autistic Society

Delegates can also choose from a range of seminars including OT- Equipping young people with SEN and parents for Life After School; Differentiation in the classroom for children with autism; SLT – the SCAEP multi-sensory social communication skills programme;  Getting Good Social Work Services; Implications of the Green Paper for Children with Dyslexia and Developing Communication Skills for Pupils with Down’s Syndrome.

I’m really looking forward to meeting Debs Aspland, the chair of Kent parent-carer forum, who’s delivering a presentation drawn from her experience as parent of a child with a diagnosis. We’ve built up a friendship via twitter and Facebook and narrowly missed meeting at the Labour SEN policy review meeting a few months ago. Social media is fab for making connections like this, especially as a parent of children with special needs, which can be socially isolating.

So, really hope to see you there if you can make it. And if you do, don’t be shy and make sure you come up and say hello!

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?

Special Needs Jungle in the Daily Telegraph. What I really think

There’s a story about SEN in the Daily Telegraph today “Can 20 per cent of schoolchildren really have special needs?” by Peter Stanford. It’s already attracted lots of comments, some informed, others somewhat less so, shall we say.

The story is a follow on to other, recent reports blaming rising SEN figures on either bad parenting or bad teaching or both. Peter wanted to find out the real root of it, but it seems even he was flummoxed.

He interviewed me for the piece and the general gist of what I said is there, although I didn’t give up my TV career to go into school to help, I gave it up to be with my children at home because I decided it was a much better use of my time than giving good “TV smile”. Being able to help in school and see for myself how things worked was very useful, especially in the light of my boys’ difficulties. I could see for myself how different they were to other children, in a classroom setting. I could see that the teachers were, in my opinion, of varying quality, ranging from totally brilliant to inexperienced and out of their depth.

What I said when speaking to Peter but didn’t make it into the piece, was that I believe that the pressures of today’s society on children, parents and teachers are immense. Responsible parents are faced with the knowledge that their kids are going to have to survive in a highly competitive world and are more vigilant when they see their child not doing as well as they might. Responsible parents just want their child to have the same opportunities as every other child to reach their potential – and that sometimes means accessing extra help through the SEN system.

Are these parents all middle-class? Many are, but far from all of them. I know this to be true from the emails I get. It doesn’t matter what class you are, the difference is how much attention you’re paying to your child and that has nothing to do with class.

Now, it is obviously true that a child does not automatically have SEN just because they are not at the top or even the middle of the school class. But a parent knows their child the best. When their profile of achievement is uneven or their social difficulties affect their ability to learn, intervention is warranted. In a mainstream school, a teacher has thirty children in the class. That’s thirty children of differing ability, different learning styles and varying levels of attention and behaviour, whatever their background.

Teachers aren’t super-human. They’re overworked, stressed (whatever the man from OFSTED says) and under-resourced. Can one person pay as close attention to the needs of thirty totally different children as each child requires? Of course not and the blame is not theirs. The SENCo might have three other roles in the school. The IEP may not be worth the paper its written on because it’s rarely looked at (through time pressure, not because the teacher doesn’t care).

This is why responsible parents have to step in to make sure their children get the help they need. They’re not “sharp-elbowed” or any other derogatory term. They are responsible, vigilant and determined, because if they don’t help their children, no one will. And don’t think that they are able to somehow ‘cheat’ the system. Only around 2% of children actually get a statement – far less than should have one in my opinion, but those that do have been through an unforgiving assessment process of experts and, sometimes, the scrutiny of an appeal to the SEND Tribunal

And what about those children who are not blessed with determined parents like these? The ones who are often put on the SEN register because it’s the only thing in a teacher’s toolbox to give them a leg-up? This is the huge inequity of society. These children often fall through the cracks. They end up in a continuing cycle of deprivation. They may even end up in the criminal justice system.

They may or may not actually have special educational needs to start with, but if their home life is insecure and they live in poverty, it is sure to have an impact on their learning. They may just need attention and nurturing to give them self-esteem and confidence in themselves. Former head teacher, now an Educational Psychologist, Charlie Mead, has an answer and it’s not rocket science. He has instigated ‘nurture groups’ in secondary schools with amazing results.

In this presentation he describes how nurture groups in mainstream secondary schools can enable children with “special educational needs” to receive the support they need and improve their educational outcomes making the best use of scarce resources. Watch his presentation below. To see him speak, book for the TAPF SEN conference in June at this link

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.

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. Here it is below and 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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Hi everyone.

I am mother to a ten year old boy who was born with multiple birth defects. He required many surgeries and as a result was left with severe separation anxieties. When he started pre-school I had to attend with him and couldn’t even leave the room. He could not attend school for more than 2 hours a day during his reception year because of his anxieties, medical problems and mainly because this school was less than empathetic to his and indeed, our whole family needs. Although they were classed as ‘outstanding’ in their OFSTED report, they never listened. They only told and kept referring to themselves as “experts”, a term we all as parents hate.

I moved within the year and made sure I placed my son in a school where the headteacher was very empathetic. She listened attentively to my concerns and requests – I knew this was the right school for him and although I applied for a Statement as I felt and the school felt this would be needed, he managed to settle in straight away with very little problems although he was placed back into reception again (a year behind his age) and was placed on School Action Plus.

I gained employment at this school as a Teaching Assistant and worked with an Autistic boy for the three years he was in this school before transferring to Junior School.

I have been able to use my knowledge and feelings as a parent to help in my work with this boy. I have also witnessed how communication plays a huge part between schools and parents – I see how things can be improved, I see how schools can be too judgemental on parents without knowing the full facts and seeing the full family picture. I also see where parents can be too demanding on schools without knowing all the facts.

In the course of my work I attended courses. I found out about the Autism Toolbox. This is a valuable resource. I never knew this existed however, ALL schools have it [SNJ note: all schools in Scotland, this is a resource developed for Scottish schools]. It gives examples of language jigs and social stories. These can be used for anything i.e, trips out shopping, going to bed, playing with friends, school trip out, school photographs etc. PLEASE, PLEASE, if you are a parent of not only an autistic child but a child who has any kind of anxieties, communication difficulties, behavioural difficulties, ask your school if you can borrow this resource to help you with routines at home and also make sure they are using this resource in school for your child. The Autistic toolbox can also be downloaded from many LEAs websites under the special needs section. If I had known about this valuable resource I could have used it to help my son and am sure that it would have saved a whole lot of family frustrations.

When looking for schools it is important to use your ‘gut instinct’ as a parent. My son’s first school did little to help him, even though as I said, they were rated as ‘outstanding’ in their OFSTED report. His new school however was rated as ‘satisfactory’ but they listened and helped him progress. It is also important as a parent that you not only get to meet the teacher but more importantly your child’s keyworker or teaching assistant, as it is this person who will have the most ‘hands on’ time with your child.

Talk to them about how you feel, tell them what is important to you, be sincere. Most of us find it easier to be honest and tell medical people the difficulties we are experiencing at home but when it comes to schools we feel less able to tell them about our struggles. A good school will not judge you if you are honest about what you are having difficulties with. Suggest home/school diaries where the teaching assistant will record what went well and what was difficult in the school day. Then the parent can record what went well, was difficult at home – home and school working together where the child gets rewarded at home for what went well during school and the child gets rewarded at school for what went well at home.

The difficulties can also be addressed. Ask for the TA to make up social stories – examples of these can be found on the internet. These can then go home and be read as a night time story – they can tell stories about how your child can ask to play with children at playtime, problem solving, when things change, etc. The pictures from these stories can then be minimized and used by the TA as visual reminders that can be shown to your child when playtime begins etc.

Find out whether your child has support at playtime; in lots of schools the teachers, TAs have their break when the children are out playing. This is when your child needs the most help! Other teachers and TAs on duty in the playground may not fully be aware of your child’s difficulties. Ask the school if you can go in and talk to all staff including teachers, teaching assistants, midday supervisors. It is important that everyone at school knows your child, their difficulties and how to help.

Schools have many resources which can help your child with their learning, homework. They also have special needs website addresses to help your child learn at home that can help with maths and also help develop fine motor skills. Just ask if you can borrow these resources or make a note of the website addresses.

If there is an important meeting at school about your child, ask the school to confirm the minutes of the meeting in writing. We as parents can only hold as much information as our emotions will let us. This often leads to us ‘making up’ the rest of the conversation without knowing it and jumping to false conclusions.

If your child has recently started school and you have been an ‘at home mum’ caring for your child, why not volunteer as a parent helper? If you enjoy this and a position becomes available at the school, ask to be considered. Don’t feel that you are unqualified for the job. You can have a teaching assistant with all the qualifications in the world who lacks the passion and enthusiasm required to really make a difference when working with a child and then there’s you – a parent who knows what it’s like, who will treat the child they work with as if they are your own, being able to relate to how their parents are feeling.

I am so glad I applied for a job as a teaching assistant – I always think of how I would want someone to work with my son when I am working with a child. How wonderful it is to have played a part in helping a child succeed knowing that you put your all into working with that child and neither you nor anyone else could have helped that child more.

I would really appreciate your comments as to whether you feel your school is supportive or unsupportive – Do they always plan ahead and have everything sorted out so you are not worried at all or do you feel you have to constantly approach them in order for things to move forward.

Many thanks to Tanya for sharing her experiences. If you’d like to share what you have learned about helping your child to help others, please email me  

Advocates For Children – a FREE SEN legal advocacy charity.

The world of special needs is, I have discovered, populated with extraordinary people  – both those who care and do their best for their children and professionals who go the extra mile to provide whatever help they can.

One such lady is Gloria Vessel, a barrister who has for many years carried out pro bono work for families affected by disabilities and SEN. In a decade of helping families at the SEN Tribunal, Gloria has never lost a case.  However, it became clear that she could not take on all the children whose parents were asking for her help so she founded the charity, Advocates for Children. Today, Gloria has written about the charity and its work exclusively for Special Needs Jungle.

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For parents of children with disabilities it really is a jungle out there, especially when it comes to getting the right school, or the right schooling for your child. Parents are faced with a bewildering mass of Codes of Practice, deadlines, and the ever present prospect of having to take your case to a Special Educational Needs Tribunal. Advocates for Children is here to help.  We are a relatively new charity; only three years old.  Our volunteer Advocates help children with disabilities and life-limiting conditions aged 4 – 16 with problems at school.  Our services are free.

Advocates For ChildrenProblems we deal with include getting the right educational support for a child at school, getting the right school for the child,  giving parents advice on where they are going with their child’s case, or addressing the issues of bullying or abuse of children. We believe that when you are helping children one size does not fit all.  No two cases are ever the same, and we know that every child and every family are unique, so we devise help to fit the needs of each family and each child.

Your child is never just a case number to us.  Your child is a unique and special individual that we are privileged to advocate for. It is our policy to see each child that we Advocate for, so that we know best how to help them.  Our central focus is always what is best for the child. We also give advice to parents over the telephone, where they simply have a query that they need some help with.

For many parents we can resolve a problem with one call. If parents want to be legally represented, we can help you to find the right solicitor, and to advise you on what you need to do.  In certain circumstances, we would represent our own clients at a Special Educational Needs Tribunal, however we try as hard as we can to avoid a Tribunal if that is possible. The law is a vital tool for parents to be able to get help for their child, but we urge parents not to see it as a first resort, or as the only resort. So often parents will ring asking about Tribunals, or they are even be on their way to Tribunal, without ever having been told, or having been able to find out, what they actually need to do to give themselves the best chance of success at a Tribunal, or even understanding exactly what is involved.  That is a dangerous position to be in.  Knowledge is power, so we help to give you that knowledge.

It is also amazing how many parents have been told that they need to go to Tribunal without ever having really met with the Local Education Authority to discuss their child’s case.  We can review a case and see where there are areas of agreement, as well as disagreement, and see if a solution can be arrived at by negotiation and not by immediate legal action.  That benefits both sides and benefits the child.  And, if it comes to a Tribunal, the parents will be much better prepared, and will know what they need to focus on.  It really is good to talk! A Tribunal is a legal procedure and the evidence you put forward is vital to your case.  We advise you on what the evidence is that you need.  You know your child inside out, but a Tribunal Panel does not.  They have to decide on what your child is all about by the written evidence in front of them.  So, you need your written evidence to help you make your case.  Of course you can talk about your child, but you need written evidence too.

As a barrister I have the greatest respect for and faith in the legal process, but I also know that the better informed parents are the better equipped they are to make all-important decisions for their children before that process begins. Advocates for Children believes in the dignity of the child.  We champion the legal and human rights of the children we Advocate for and our watchwords are ‘Listen, Respect, Care’. Our Trustees are all Mums and Grandmums who really understand what our clients are facing and that is what we feel is our greatest strength, as it drives all that we do for these special children. Our Mission Statement is; To enable children with disabilities to have the opportunity to fulfil their true potential and have their chance to shine. We are proud to do just that.

http://advocatesforchildren.org.uk/

My pick of the posts about special needs this week

I’ve come across lots of interesting stories this week so here’s my list of the cream of the crop of news, blogs and, of course the week’s stories from Special Needs Jungle. Have a great weekend – let’s hope the rain holds off.
 As usual, if I’ve missed yours, add it to the blog comments to share with others.

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

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

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

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

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

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

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

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

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

For online booking, click here

Common sense solutions to solving dyslexia issues

Last week, while reading my SEN news feeds, I came across an article about dyslexia on the Conservative Home website by education expert, John Bald. John is a former OFTSED inspector and contributor to The Guardian. He has almost forty years’ experience of teaching people of all ages to read and write, to learn foreign languages and to understand and use arithmetic.

I got in touch with John and asked if he would mind setting out his ideas in an article for Special Needs Jungle readers. He very kindly obliged – and I think you will find it extremely interesting reading:

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Tania’s request seemed simple – she had read a posting dealing with literacy problems on another site, which set out to explain what I described as “the dyslexia racket”. Could I write a straightforward guide for parents on what to do if their child has a problem?

For some issues, the answer is, “Yes”. If the problem concerns literacy, and does not reflect a serious general learning difficulty, bring your son or daughter to see me, and I will fix it for you without charge. This is a big claim, but I deliver on it, time after time, because I know the mental processes involved in reading, and the regular and irregular features of English spelling like the back of my hand. As we read, we use the information contained in letters to do several things at once. We identify words by tracking print closely with our eyes – the latest tracking devices show eye movements following print, as well as changing their fixing point on the page. As we do so put them together into phrases, to reproduce the intonations of the language and reconstruct the sense indicated by the author.

John Bald

The process is a little like reading music. Phonics, the relationship between words and sounds, is at the heart of it, but, unlike musical notation, they are not always reliable, so we have to learn what the letters are telling us in an individual word. For example, the a sound in can has to be stretched to say can’t, and the letters don’t tell us this, any more than they tell us the difference between do and don’t. Once we’ve learned to use what the letters tell us, without supposing that they tell us everything, we understand that the language is a human construct, with human failings, and that it does always respond to strict logic.

As I say to children, English is roughly a thousand years old, and if we were a thousand years old, we’d have a few wrinkles. Much of the difficulty many people experience with reading in English arises because teachers do not know the wrinkles. It’s not their fault – no-one has pointed these out in their training. The reason I came to know them myself was that I did a degree in French, which is the source of over half of the problems. Say table in French and you will hear that l comes before e. It’s phonics, but French phonics. William the Conqueror’s invasion in 1066 left us with a lot more than castles!

How we put words together in phrases and sentences is also a bit like music, and I only understood this last year, when I read the French government’s national curriculum for learning English. It points out that, except for very short words, one part of each word is almost always picked out for stress. Again, the letters won’t tell us what this is – we have to know it, and it is not even the same in words of the same family – photograph, photographer, photography. The last straw for foreign learners is that we pick out one word in each phrase or sentence for extra stress on its own, usually without even knowing that we do it. Controlling these patterns of stress in real time requires very detailed knowledge of the language, and is one reason why so few foreign speakers of English have no detectable accent.

So, if someone comes to me with a reading problem, I explain this and we practise. First, though, I have them read to me, and ask myself two questions:

1. What is it in this person’s thinking that is preventing them from reading?

and

2. How do I help them adjust their thinking so that they can read?

These questions focus my mind on the person I’m working with, and not on some theory – my own or anyone else’s. We need to tune into print, and to help people do this, we need to know the causes of interference. The most common are guessing at words, usually from their first letter, not seeing clearly – some people are sensitive to certain wavelengths of light in a way that only becomes clear when they have to apply their eyes to the tightly disciplined activity of reading – and not hearing clearly, sometimes because of misconceptions developed in early childhood through conditions such as glue ear. Teachers should know all about these things. Alas, most don’t. So, if your child has a problem with literacy, take him or her to someone who does.

I use a similar approach to spelling , Slimmed Down Spelling, but that is for another posting. An account is at http://johnbald.typepad.com/language/2009/06/slimmed-down-spelling-and-government-nonsense.html. I am currently working on maths.

But what if the problem is not with reading, spelling or arithmetic? What if it is a behavioural issue, Asperger’s or Autism? The truth here, I think, is that our knowledge of these issues is not far advanced from that of our general knowledge of science in the seventeenth century. We can see things that we can’t fully explain, and our attempts to solve problems are therefore not fully effective. Even respected scientists such as Simon Baron Cohen resort to blatant speculation, such as his idea that autism is the “extreme male brain” when the evidence runs out.

But I still come back to my two questions, perhaps extended. What is it that is making this person angry, or anti-social? What is it that they need to understand and don’t, and how do we make it clear to them? We know of successful techniques such as social stories to help children focus attention on other people as well as themselves or, more recently, of practising telling the time quickly in order to focus attention on detail. One thing I can say, from extensive experience, is that anger and poor behaviour often arise from children’s frustration at not being able to do their work, and in some extreme cases because of the effect of sensitivity to light that is not identified because no one is looking for it. If the issue that is causing concern is anger, however it is expressed, then if we are to tackle it, we need to move beyond our concern with managing the anger, find out what is causing it, and do what we can to remove the cause.

Find John’s blog and contact details here: http://johnbald.typepad.com/

TGIF: And a chance to see the week’s special needs news & views

Tania TirraoroThis week we’ve had sunshine, showers, hail as big as marbles and thunder and lightning… it must be April. I’ve whipped up some special needs stories and blogs that might have slipped your notice as you get over all that Easter chocolate.

As you read this over the weekend, I’ll be at a spa hotel with my husband, enjoying our carer’s break, leaving the boys and the dog in the capable hands of my mother-in-law. Have been instructed to leave my iPad behind and relax… if you spot me online before Monday, please tell me to log off immediately.

The lifetime legacy of special needs left by meningitis

I recently met the chief executive of The Meningitis Trust, Sue Davie, and heard her talk about the hidden after-effects that meningitis can leave on children who’ve apparently recovered.  The special needs they have due to acquired brain injury are often missed, but in this guest post, she explains how the illness can leave a long-lasting legacy.

Meningitis strikes fast but its impact lasts a lifetime. It’s a disease that can affect anyone, of any age, however children under five are the highest at risk group. People often think about the mortality rates of meningitis (sadly 10% of people will die) and the physical after-effects of the disease, such as limb loss (where septicaemia has occurred), but what few people understand is that 30-40% of children who survive meningitis will be left with other devastating after-effects. Some of these other after-effects can be hidden and may not become apparent until some years after the meningitis, most commonly causing difficulties at school.

c. Meningitis Trust

At the Meningitis Trust, research we commissioned has provided the scientific evidence to back up what we already knew from the thousands of families we have supported over the years. The research compared children who had survived meningitis with those of the same age who had not had it. Many differences were found, including:

  • Significant deficits across all aspects of memory
  • Poorer executive function – leading to problems with planning and organising
  • 4 times more likely to have mental health issues
  • 5 times more likely to have speech and communication problems

Effectively, as difficult as it is for a parent to hear, their child may well have been left with what is known as an acquired brain injury (ABI) as a result of the meningitis. And there is little or no understanding or even acknowledgment of the impact of ABI on a child’s education. It is like the silent epidemic – inherent damage that may not be seen for years and is an evolving disability. Whenever special education needs are discussed, rarely if ever does it include the needs of those children who “acquired” difficulties.

An excellent publication, “Educating Children with Acquired Brain Injury” by Beth Wicks and Sue Walker highlights why children with ABI have different special needs including::

  • There may be delayed deficits – injury may have been to a part of the brain responsible for skills not required until later in life e.g. a child may appear to be doing well in Primary School, but on transition to Secondary, issues appear as they have problems with their executive function responsible for planning and organising
  • There are often significant discrepancies in ability levels e.g. excellent vocabulary knowledge but lack of organisational skills to formulate expressive language
  • Things that change frequently – they can seem to be learning rapidly at times, other times slow or plateau effect. And they can “grow out” of problems as they recover or compensate for impaired ones
  • They may score OK on conventional tests of intelligence as they have retained previous learning (meaning they are at age-equivalent level), but they gradually fall behind as new learning is impaired

As the impact of meningitis and ABI generally is not understood by those responsible for identifying need, it’s not a surprise that it goes unsupported:

  • As it is often an evolving issue, it does not fit standard SEN systems
  • It is usually complex (i.e. many different facets to it), frequently leading to some individual components being identified but in isolation
  • The cause of the issues may have been years before (e.g. meningitis as a baby) so it is not connected and therefore the root cause not considered (ABI)
  • Generally, teacher training in special educational needs is poor and does not include training on ABI and its impact
  • And the people responsible for assessing children, the Educational Psychologists, have very little understanding and expertise in ABI – and yet they are advising schools.

Alongside families, schools are the major providers of rehabilitation for children with ABI and yet the system that is in place lacks the knowledge of what has happened, its impact and how best to meet individual needs.

A report called “Missing Out” was produced in 2001 by the Childrens’ Acquired Brain Injury interest Group. A number of recommendations were made including around ABI awareness and education amongst teachers and educational psychologists. 11 years on and nothing has really changed.

The Meningitis Trust exists to support people affected by meningitis and we are now fighting on behalf of all the children who have survived meningitis to get them the educational support they deserve. Alex, one of our Young Ambassadors who was 8 when he contracted meningitis said “I thought being in a wheelchair was the hardest part – but I was so wrong. I found myself struggling with work that I could do before with my eyes shut” and he also said “It was not my fault I had meningitis – I still deserve an education”. You can read his story at this link in his own words.

And for parents it is a heartbreaking battle – this is what two mums said:

  • “None of the professionals who came to the meeting about my son had any knowledge of meningitis or the after-effects. I felt like he was just set up to fail. They say education is inclusive ….. not for children who have had meningitis”
  • “Throughout my son’s school life, he was forced to fail before he could get any help and his self-confidence was left in tatters – if it had been an obvious physical disability he may have got the help he needed”.

Meningitis may be considered a “rare” disease but there are over 20,000 children in the school system who have had meningitis and as many as 40% of these may be struggling. But ABI can be caused by many things and if you consider that every year there are over 500,000 children under 16 in the UK admitted to hospital for head injury, and more than 10% of children can have illnesses that can cause ABI (including meningitis) – it means the number of children potentially struggling in education without the support they need because of an ABI is huge. But the system continues to fail them because the impact is not understood – and that cannot be acceptable.

Children who have had meningitis have already had to fight for their lives – they should not now have to fight for their future. Support our campaign today – just go to www.meningitis-trust.org to sign our petition and see how you can help children like Alex.

Footnote:

Knowing the signs and symptoms can help to save lives and I urge you to ensure you have this knowledge close to hand. You can download our free meningitis app at  www.meningitisapp.co.uk, go to our website  or call our 24 hour freephone helpline (0808 80 10 388) and get a free credit card sized symptoms card. Why don’t you order some for everyone you know, your school/nursery etc. Remember, anyone at any age can get meningitis so everyone needs to remain vigilant. Having our information close to hand saves lives – we know because many people tell us.

If you have been affected by meningitis, you do not need to suffer alone, The Meningitis Trust helps people to move forward, providing free emotional, practical and financial support – just call us on 0808 80 10 388, email us at support@meningitis-trust.org or go to our website www.meningitis-trust.org. Or why not join our Facebook or Twitter

Catch up time: Read the special needs stories you may have missed

Tania Tirraoro, Special Needs JungleA diverse list of stories and posts this week, but all interesting reads. As ever, leave your own story link in the comments if you’ve written or spotted something interesting that’s not mentioned here.

On a purely personal note, thank you so much to anyone who nominated me for the BritMums awards. I may have mentioned (just) a few times that the Special Needs Jungle blog has been shortlisted!  It’s one of 20 blogs in the ‘CHANGE’ category and now needs votes to go through to the final stages. If you have time, I’d be really grateful if you could help it along. It’s in section 3, number 15 at this link.

And after that quick promo, here’s the special needs story round up:

Cambian launches Specialist Education Scholarships for children with Asperger’s or autism in their schools

Many parents of children with Autism and Asperger Syndrome have faced unbelievable struggles to get the right education solutions for their children. Some have fought their LEAs for funding to the school most appropriate for their child and not succeeded. Now, specialist independent education provider, the Cambian group, have launched a scholarship to fund two children at one of their schools. It’s a fantastic opportunity and is the first of its kind.  Jeremy Wiles of the Cambian group, explains why they’re doing it, in this guest post written exclusively for Special Needs Jungle: With over 30 years of experience in supporting children with complex educational needs, the Cambian group is no stranger to seeing how children can thrive and achieve things never thought possible, within the right learning environment. Sadly, not all children with Asperger’s syndrome or autism in the UK have the opportunity to attend a school which is specifically designed to address their individual learning and behavioural needs.  It is from this understanding that we first conceived the idea of launching a scholarship scheme for our residential specialist education schools. For parents, securing the right specialist education for their child with Asperger’s syndrome or autism can be a struggle. As we know, each situation is unique; some parents find their child performs academically but they encounter behavioural issues in the home or school. Equally, some children with Asperger’s syndrome or autism find school a huge challenge, and may face problems with bullying or homework. Our specialist schools are set up to address individual needs to ensure every child reaches their own personal best, however it is defined by them or for them. Of course, many parents of a child with Asperger’s syndrome or autism will have already been through the ‘statementing’ process. Finding the right school is another hurdle in what is often a lengthy process that can cause considerable stress for a fmaily. In recognition of this and the positive feedback we continue to receive from parents and children at our schools, we decided that it was time to pilot our first scholarship scheme. Our Specialist Education Scholarships schemewent live two weeks ago and we are now offering two residential placements at one of our Ofsted rated ‘outstanding’, specialist education schools. These placements will be available for two children with complex educational needs linked to Asperger’s syndrome or autism.

Image courtesy of Cambian

We’re thrilled and proud to be offering these placements to two children, at one of our residential specialist education schools.  The scholarships will be awarded after assessment by a relevant school, to ensure that the level of needs of the child would be matched with the right school.  This would typically mean that a child had a statement or was progressing through this process, at the time of application. The scholarship will provide an opportunity to place two children into a supportive and nurturing learning environment, for the duration of their education at one of our schools. We cannot urge parents enough, to come forward and find out more about what this scholarship could mean for their child and we are welcoming any questions that they may have. What our specialist schools provide, is a unique opportunity to experience the very best child-centred, individualised educational support needed by these students. We offer a unique Active Learning™ programme, which ensures a collaborative, multi-disciplinary approach to education, care and therapy, and access to a wide range of facilities to help students learn and progress. Our results speak for themselves; 40 percent of our post-16 students with Asperger’s syndrome return to mainstream college and around 85 per cent of students with autism achieve their individual education plan targets. It has been really exciting to see the applications roll in so far, but we really want to hear from more parents out there, and as such, we are encouraging as many people as possible to join in our conversations on Twitter. You can find us by following @Cambian_schools and don’t forget to include #CambianScholarships in your tweets, to join in the conversation. We will be hosting another live Tweet-up again very soon. Parents or guardians are able to apply for a scholarship place by downloading an application form from our website. The application should be supported by a professional who is currently involved in the care and education of your child. Two scholarship placements will be awarded in June 2012 and the deadline for submitting an application is 1st May 2012 at 5pm. If you would like to find out more about the scholarships, visit our frequently asked questions page. If you have further questions about the scholarships or would like to speak to someone about one of our schools please call Cambian’s SEN Helpline on 0800 138 1184. We look forward to hearing from you.”  

What’s been said about special needs on the web this week

Friday’s come around again – this one marks the day my boys break up for Easter and don’t go back until April 18th. Son1 is on a WWI trip to Ypres, Son2 off sick with painful legs caused by Vitamin D deficiency, so their holidays have already started. My task – get Son2 out of the Technolair and into the sunshine, which is easier said than done.

While I’m doing that, have a look at these stories and blogs I found (or wrote myself) in the past week. Lots of good stuff. If I missed your great blog post or news story, leave it in the comments and I can add you to my RSS feeds.

Unofficial exclusions – Has it happened to your child?

Some schools in England are illegally excluding pupils, sometimes permanently, without going through the full formal process, a report says. England’s children’s commissioner Dr Maggie Atkinson heard some pupils were moved to other schools or sent home without an exclusion being recorded. Most schools tried to hold on to troubled pupils, she said, but a minority excluded on “a whim”. BBC News

This story has made the news today but for me, it comes as no surprise. In fact, I published a post about this very subject a few months ago regarding unofficial exclusions because of a child’s special educational needs:

Yesterday, I was talking to a friend of mine who is a highly experienced SEN Advocate. I told her of a parent I know who had been asked to collect her ASD son early from school each day. My friend, Julie Maynard, was outraged. That was, she said, an unofficial exclusion and was illegal. The child was being deprived of a full school day because of his disability….Read more

That story followed the Centre for Social Justice  releasing a report last October that said some schools in England are “acting illegally or unscrupulously” by excluding pupils by unofficial means. Some schools encourage parents to remove difficult children, avoiding officially excluding them but providing no support. The report, No Excuses: A review of educational exclusion, was based on interviews with more than 100 heads, teachers, parents, pupils, local authority, voluntary and private sector workers.

Today, Mark Atkinson, Director of Policy, at Ambitious about Autism said, “The Children’s Commissioner for England is right to highlight the scandal of illegal exclusions from school. Children with autism are unfairly and disproportionately over-represented in exclusion figures. The fact that pupils with special educational needs (SEN) are eight times more likely to be permanently excluded from school is shocking and must be addressed.

“We call on head teachers to think twice before excluding a child with SEN, and we call on governors to hold their senior staff to account.”

If your child has been unofficially excluded, read my earlier post to the endas there is a form letter protesting this that you may want to use.

Catch up with special needs news you may have missed this week

Another Friday is here – just one week to go before my boys break up for an almost-month-long Easter break. Here’s my weekly round up of the best special needs and disability stories and blogs I’ve spotted this week. As ever, if you have one to share, list it in the comments of this blog so others can enjoy it!

If you enjoy the Special Needs Jungle site, or have been helped by it, I’d be delighted if you would please nominate specialneedsjungle.com in the BritMums Blogging Awards in the CHANGE! section

Got the statement? Great, but your work’s not over yet.

Many parents are so relieved to get that letter saying the LEA has decided to issue a statement of special educational needs for their child that they think their work is done. And they’d be very, very wrong. A statement is useless if it does not define your child’s needs completely and set out in detail how they will be met.

When you receive your draft statement, you or your advocate, must ensure that all your child’s special educational needs have been properly identified and stated in part two of the draft statement. Then, you must ensure that every stated need should be met with appropriate provision in Part three.

Each special educational need specified in Part 2 must be met by provision specified in Part 3: R –v- Secretary of State for Education ex parte E [1992] 1 FLR 377, CA

If your child’s needs have been inadequately stated in part two, now is the time in your response (which normally needs to be within 15 days) to make sure you add them so that they can be included ans provision provided.

This process is not made easier by the way the statement is set out. Instead of listing Need, then Provision next to it, all the needs are set out then all the provision, so it is up to you to match one against the other. I would recommend using a table to do this – one column headed Needs- Part 2, the next, Provision, Part 3 and a third column entitled,  My Comments.

Then go through part two and pick out each separate need and list it in a separate row under the first column. Then go back down your list and search through part three of the proposed statement document for a matching provision. The statement document has evolved to be quite narrative in format, often just pasting in chunks from the Ed Psych report (in our case from the Ed Psych report that we had paid for ourselves) This does not necessarily mean that the statement writer has understood your child’s needs, just that they know how to copy and paste.

Part 2 can include narrative description of a child as well as specifying SEN (cf R –v- Secretary of State for Education ex p E [1992] 1 FLR 377): W –v- Leeds CC [2005] EWCA Civ 988, [2005] ELR 617, 29/7/2005

So your final table should have all your child’s needs in column one that have been stated and with your own additions if needed (make sure it is easy to understand you have added these yourself)

In the second column, which reflects Part 3 provision, you should have listed everything you can find that matches with the needs. This may well be eye opening.

Then in the third column make your notes and observations about the provision.

Then go back through Part 2 and Three and make sure you have covered everything. You may well find that there are unstated needs or needs that have been stated that there is no provision for. Of course, you may see that your statement writer has done a sterling job and everything is as it should be.

If you have non-educational needs and provision listed in part five or six, ensure this is also adequate. Sometimes speech and language is listed as non-educational. If your child needs this help for living (eg eating) then is is non-educational. If they need OT or SLT for learning – ie, writing help for dyspraxia, communication skills, then is should be in parts two and three as educational provision.

You can ask for a meeting during this time with the LEA and after the meeting you have another 15 days to ask for further meetings. Within 15 days of your last meeting, you can send in any more comments. If you would like more time to comment, you should talk to your case officer.

There should be no school named in part four at the point of issuing a draft statement. But be aware that the LEA is not obligated to name a school that can provide ‘the best’ education, just one that provides an ‘adequate’ education that meets your child’s needs.

The LEA/SENDIST is under a duty to secure provision which meets the child’s SEN but is not “under an obligation to provide a child with the best possible education. There is no duty
on the authority to provide such a Utopian system, or to educate him or her to his or her maximum potential. …”: R v Surrey CC ex p H (1984) 83 LGR 219.

It’s a very good idea to research suitable schools before you even know if you’re getting a statement so you know what type of school can meet your child’s needs. Often you will know exactly which school you want them to go to – and that’s the next step!

SEN-Getting Started With Statements

This advice and more is detailed in my SEN statementing book, Special Educational Needs, Getting Started with Statementing. It’s available in paperback or ebook from Amazon & WH Smith online or paperback from Waterstones.com. Or you can order it from your local bookstore. So many SEN books are expensive so I have priced this at just £6.99 to make it accessible to as many parents as possible.

Legal Quotes Source: ISC

Catch up with the best special needs blogs and news from this week

So many autism, Asperger’s, dyslexia, ADHD and other special needs stories this week. This is my pick of the best of the blogs, news and research.

If you enjoy reading Special Needs Jungle, I would be really happy if you would please nominate SpecialNeedsJungle.com blog in BritMums Blogging Awards in the CHANGE! section

Enjoy this week’s story selection. Don’t forget, if you have your own post or story, add it in the blog comments section.

If your SEN child loves computers.. watch this video

Source: Wiki

I’ve talked a lot on this site about the need to improve IT teaching in schools, before Michael Gove announced an intention to do just that.

One great way to do this is for schools to buy the new Raspberry Pi – a credit-card basic computer that runs Linux that children can learn to code with. It costs under £25. My boys’ school, I’m very pleased to say, has already ordered two of the machines and yesterday I had an opportunity to pre-order one for Son2. There’s a long lead time because demand is so high, so I’m not expecting to see it before May.

Many children, especially boys, who find great challenges with learning skills such as handwriting and accessing the curriculum the way others do, are actually terrific with computers. This is a brilliant way to encourage them into a career where they can excel.

But if you’re not especially techy yourself, how do you do this? I’ve found this great video on the Guardian’s website where Web developer Chris Cross looks at how easy it is to set up, browse the web and write code. Watch this and you’ll feel a lot more confident about how to encourage your child. For books on basic programming for kids, I found this one with five star reviews on Amazon called Hello World! Computer Programming for Kids

Vodpod videos no longer available.

Government Urged To Ensure SEN Appeal System Is Made Less Intimidating

Many families experience an intimidating process when they appeal against local authority decisions regarding special educational needs provision for vulnerable children, says speech and language therapist Janet O’Keefe, who attends many tribunals as an expert witness.

Janet says that special educational needs and disability tribunals are organised by the Ministry of Justice as part of the court system and their hearings are often heard in magistrates’ courts, asylum and immigration buildings, or social security offices which is very stressful for parents who have not done anything wrong other than disagree with the provision proposed to support their child by the local authority responsible for meeting their special educational needs.

This issue will be one of the topics under discussion at a conference called Towards a Positive Future, which Janet is holding in Newbury, Berkshire on Saturday, 16 June, where speakers will include Jane Asher, president of the National Autistic Society.

Janet, who founded Wordswell (Speech and Language Therapy Services) near Ely, Cambridgeshire, says the event is aimed at parents of children with special education needs and the professionals who support them. Janet will be speaking about the daunting and intimidating process of appeal for parents.

Janet says: “It’s disappointing that local authorities do not seem to be currently negotiating with parents, which results in more appeal hearings and higher legal costs for those parents who use expensive specialist solicitors and barristers to represent them. On average I have attended two tribunal hearings a month as an expert witness for speech and language therapy; in January 2012, there were 12 in the diary and I attended eight.

“Since all tribunals came under the Ministry of Justice, hearings have had to be held in government buildings instead of hotels or dedicated tribunal buildings to save money.  This means that instead of a formal business meeting, special education appeal hearings are now held in magistrates’ courts, asylum and immigration buildings, or social security offices.  Often there is security on the door like an airport to scan and search all bags and people entering the building. The whole process is increasingly stressful – and all because parents dared to disagree with the provision the local authorities are offering to support their child who through no fault of their own has special educational needs.

“The legal costs have also escalated for parents who seek legal representation. Just five years ago parents were telling me that their legal bill was on average £7,000, now they are telling me it is more than £20,000.”

Tania Tirraoro, a mother of two autistic sons, Luca, 14, and Giorgio, 12, and author of Special Educational Needs – Getting Started with Statements, believes a much more conciliatory approach is required which would involve a huge culture shift away from the present process so the focus is on the special educational needs of the child, and not the local authority’s budget.

Tania belongs to Family Voice Surrey, a parent carer group to help form the new SEN structure where pathfinder trials are taking place.

She says: “The system has been adversarial for far too long, and it’s not just the framework that needs to change to improve things, but the attitudes of some LEA staff to dealing with stressed and vulnerable parents. Even as the trials are getting underway, parents using the existing system are still being subjected to unnecessary expense preparing for tribunals that the LEA backs out of at the last minute, inadequate proposed statements and fights over placements. A change here would make the biggest difference of all.

“There are many fine ideals in the green paper, but the most important thing is that the pathfinder trials must show that they are workable on a large scale and do, in fact, improve the lives of children with SEN and their families.”

Jane Asher, president of the National Autistic Society, says: “I am very much looking forward to coming to Wordswell’s conference – anything that can help to promote understanding, support and the need for the right education for those on the autistic spectrum is always close to my heart.

“After over 30 years of working with the National Autistic Society I still continue to learn more about this complex condition all the time, and I know I will enjoy meeting the parents, carers, professionals and those with autism themselves who will gather to exchange experiences and to help improve the lives of all those affected. “

Janet has edited a book which was launched at last October’s Conference called ‘Towards a Positive Future: stories, ideas and inspiration from children with special educational needs, their families and professionals’ which includes practical information and support for parents and expert witnesses.

The conference is being held at the Arlington Arts Centre in Newbury on Saturday, 16 June. Early bird tickets cost £80, and £100 after 1 May, and can be booked by calling 01954 253525, or email janetokeefe@wordswell.co.uk 

Please see www.wordswell.co.uk for further information.

Ends.

Notes to editors:

  1. For photos or interview requests, please contact media officer Ellee Seymour on 01353 648564, 07939 811961, or email ellee.seymour@btopenworld.com
  2. Full details of the green paper for special educational needs, please see the Department for Education, http://www.education.gov.uk/childrenandyoungpeople/sen/a0075339/sengreenpaper

I want your statementing stories

I get emails from lots of people with questions about statementing and I do my best to answer them within the best of my knowledge or signpost them to someone who can. I also read lots of stories on message boards from people going through the process who are looking for information or other people’s experiences and so I’ve had an idea.

If you’ve been through the statementing journey with one or more of your children, I’d like to hear from you. Sharing stories can help other people on the same journey and helping people by raising awareness is what this blog is all about. If you’d like to share your story with others via the Special Needs Jungle blog, please email it to me (Tania) at info@specialneedsjungle.com. If you’d like more information before committing, drop me a line. Also, if you have any burning ideas for topics you’d like to see covered, send them in.

Post are usually less than a thousand words and I’d love to include a photo if you wish and/or, if you have your own blog, a link to it. If you’d prefer to remain anonymous, you can change the key names in the story.

I may need to edit for length or legal reasons (we don’t want to libel anyone – even though they may well deserve to be named and shamed!)

Over the next few months, I’ll be writing more about the new SEN process as it develops – there will be more news from central government soon, maybe in the next week or so. Make sure you subscribe by email to the blog so you don’t miss any updates!

Thanks!

Tania