NAS petition – Single point of appeal for EHC Plans

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

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

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

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

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

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

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

Evaluation of SEND pathfinder report – some nice weekend reading!

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

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

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

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

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

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

To recap:

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

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

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

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

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

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

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

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

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

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

Contact A Family extends free benefits helpline service

CaF logoThe brilliant charity, Contact a Family, is from today offering an extended helpline service.

Contact a Family has long been a source of information about the benefits system for parents of disabled children, however now – thanks to three years of funding – they will be able to offer more personalised advice for parents living in England.

From today (June 3), if you get in contact with CaF, they will be able to offer you an appointment with their welfare experts to discuss your situation. They will then be able to take you through the latest relevant benefits advice and run through any other financial help you may be entitled to maximise your income.

Senior Parent Adviser and welfare rights expert, Derek Sinclair said:

“At a time of huge change to the benefit system, this will provide a badly needed source of  free, confidential, high quality and up to date advice for parents. Our advisers will make sure that parents have the right information to make informed choices about issues.”

These include:

  • moving into work
  • benefit options when a child reaches 16
  • or how to use self-directed support to take greater control over how services are provided to their disabled child.

Contact a Family will also be offering a series of workshops across England  to raise awareness of the new benefits system. Get in contact with your nearest office  to find out more.

You can also access their quarterly welfare update in their What’s new e-bulletin and a range of resources to help parents make sense of the benefits maze. Sign up to receive your free copy.

Contact the CaF team of experts on freephone helpline number 0808 808 3555, email them on helpline@cafamily.org.uk or post a question on their Facebook page https://www.facebook.com/contactafamily

You can also:

  • Watch our video – meet the parent advisers and find out how they can help

Sayonara, School Action and School Action Plus

Debs writes….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Labels: Love or Loathe them?

Deb writes…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why should a label change that?

Making the Disabled Children’s Charter a health priority

As you are hopefully aware, the beginning of April saw a massive shake-up in the NHS and the creation of GP-led Clinical Commissioning Groups as well as Health and Wellbeing Boards.

The Health and Wellbeing Boards bring together key leaders from the local health and care system to develop a shared understanding of the health and care needs of their local communities and how to address them. They are intended to drive local integration between health, social care and wider partners and reduce health inequalities.

EDCM logoBut with the many priorities that these new bodies will have, the charities Every Disabled Child Matters and The Children’s Trust, based at Tadworth in Surrey have launched our Disabled Children’s Charter for Health and Wellbeing Boards to ensure that children with special needs, health conditions and disabilities stay at the top of the agenda.

Because these children often need to access services from across the spectrum of health and care and specialist education services, they are especially vulnerable to suffer the effects of a lack of integration and cooperation between the providers of these services. This can lead to their needs not being adequately met or their families having additional financial burdens placed upon them.

charter_coverThis is why these two fantastic charities are calling on all the England’s Health & Wellbeing boards to sign up to the following seven key pledges:

By [date within 1 year of signing the Charter] our Health and Wellbeing Board will provide evidence that:

1. We have detailed and accurate information on the disabled children and young people living in our area, and provide public information on how we plan to meet their needs.

2. We engage directly with disabled children and young people and their participation is embedded in the work of our Health and Wellbeing Board.

3. We engage directly with parent carers of disabled children and young people and their participation is embedded in the work of our Health and Wellbeing Board.

4. We set clear strategic outcomes for our partners to meet in relation to disabled children, young people and their families, monitor progress towards achieving them and hold each other to account.

5. We promote early intervention and support for smooth transitions between children and adult services for disabled children and young people.

6. We work with key partners to strengthen integration between health, social care and education services, and with services provided by wider partners.

7. We provide cohesive governance and leadership across the disabled children and young people’s agenda by linking effectively with key partners

CTrustThe Charter is accompanied by a document: Why sign the Charter? which explains the value of the Charter commitments with reference to Health and Wellbeing Board statutory duties and powers, and signposts Health and Wellbeing Boards to resources that will help them fulfil each commitment. It also includes a guide to the evidence that Health and Wellbeing Boards could provide to demonstrate that they have met the Charter commitments.

The Government recently responded to the report of the Children and Young People’s Health Outcomes Forum by releasing ‘Better Health Outcomes for Children and Young People: Our Pledge’. This set out the shared ambitions for all agencies in the new health system to improve the health outcomes of children and young people in England. This Charter is aimed at providing a tool for Health and Wellbeing Boards to deliver on these ambitions for a key group of its local population.

The EDCM & The Children’s Trust have jointly sent the Disabled Children’s Charter to every Health and Wellbeing Board in England and asked the Chair to sign it.

You can support their campaign by sending an email to your Health and Wellbeing Board Chair and urging them to sign it too. Find your local Health & Wellbeing Board here or just search for your top-level Local Authority where you live and “Health & wellbeing board”

Looking at our own HWB in Surrey, the board does not have any representatives from the voluntary/community/minority services or any parent representation. I find this something of an anomaly in these new days of transparency and co-production.

What does your local HWB board look like? Does it give you confidence that it will sign up to and can deliver the Disabled Children’s Charter?

Download the Disabled Childrens Charter for HWB

Download the “Why sign the disabled children’s charter for health and wellbeing boards” document here

Help kick-start a project to make low-cost Sensory Stories!

Tania writes:
So many of the people I meet who are involved with special needs have an absolute passion for helping children with SEN & disabilities achieve as much as they possibly can.
Joanna Grace

Joanna Grace

Joanna Grace is one such person. Joanna works as a special educational needs and disabilities consultant and is also a registered foster career who has provided short break care for a child with special needs. She supports schools in SEN/D provision and writes educational resources.

Joanna is a big believer in the use of sensory stories and, after being dismayed at their cost, has set about raising funds through Crowdfunding site, Kickstarter, to make her own, low-cost “Sensory Story Project.”
But time is limited- she only has 18 days left to reach her funding goal to make a viable project. Funding on Kickstarter is all-or-nothing — projects must reach their funding goals to receive any money at all.

Joanna says, “I fear people look at it and think that because it got such a great start it’s bound to finish strong, but it is only me working on it. I’ve taken 42 days (that was the total length of the project) off work and I’m at my desk from when I wake in the morning until when I go to sleep and the strong start is me contacting everyone I know….but I’ve used them all up now. I don’t know how I’m going to get the project the rest of the way.

She’s written for Special Needs Jungle about it and about how you can help – and get something back for yourself. At the end of the post, you can find out more about Sensory Stories.

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Should sensory stories be available to families?

Early on in my teaching career I remember a staff meeting (I worked at a school that catered for children with severe and profound special needs) spent discussing what we would spend the literacy budget on for that year. After much agonising we decided to purchase a set of sensory stories.

Sensory stories are a great resource for children with special needs. Sensory stimulation is vital to cognitive development and for children with profound disabilities who can’t access stimulation themselves sensory stories are a fun way of providing it.

Helping to tell sensory stories

Helping to tell sensory stories

For children who struggle with sensory processing sensory stories can be an enjoyable way to encounter and get used to new stimuli. And for everyone they’re engaging – who wouldn’t want to be told a story in which you get to taste something, smell something, touch something, see something and hear something?

But when the sensory stories arrived we were disappointed, they’d been very expensive and the stories weren’t very interesting, the stimuli weren’t very stimulating. I realised that even if they had been great, the price of them would have prevented most families from being able to buy them to share at home.

I know that many families of children with special needs and disabilities struggle to find money for a whole host of things: new equipment, transport, specialist clothing, new treatments etc. It seemed wrong to me that stories which would benefit their children should be priced out of their range. It’s played on my mind ever since and in January, with the launch of Kickstarter in the UK, I saw my way to change it.

I’m currently running The Sensory Story Project on Kickstarter. The aim of the project is to create sensory stories that will be affordable to families, so that they can be bought as birthday presents, read as bedtime stories and shared between the people who are likely to be able to benefit most from them. I only have until the 20th of May to make the project a success (I’m running out of time!)

Kickstarter is a bit like sponsoring, in that backers pledge an amount of money which is only claimed if the project is a success. If the project doesn’t succeed, no money changes hands. However, unlike sponsoring, Kickstarter backers get something in return for their money: rewards!

My project has a long list of rewards to choose from: guides to sensory learning, little sensory toys, t-shirts, sensory experiences and of course sensory stories themselves. Pop across and have a look at the project and see if there is something you’d like.

SNJ has backed the project and made a pledge, and we’d love to have you as a backer too. http://www.kickstarter.com/projects/sensorystory/sensory-stories

All About Sensory Stories

What are sensory stories?

  • Sensory stories are comprised of simple sentences (not babyish, just crisp and clear). Approximately ten sentences in a story.
  • Each sentence is paired with a rich sensory stimuli which is shared as, or after, the sentence is read.
  • A rich stimulus doesn’t need to be expensive, discovering them takes insight: simple things like darkness, or the bang of a drum are strong experiences. Sometimes the way you deliver an experience can determine whether it is a rich experience or not, so for example – touching a piece of cloth isn’t a great experience, it’s the same as touching your own clothes or your bedding, it’s not very interesting, but if it was corduroy and you were encouraged to rub your fingers across the ribbing then it would become an interesting touch experience.

How can sensory stories be used to benefit individuals with special educational needs and disabilities?

  • Sensory stories were originally developed for use with individuals with profound and multiple learning disabilities (PMLD). Individuals with PMLD may not be able to access sensory stimulation for themselves. It is easy to overlook just how much stimulation an able bodied child accesses themselves simply by reaching out to things or turning their head to notice things. Sensory stimulation is needed in order to lay down neural pathways in the brain. If children can’t access it for themselves it is important that we provide it. Beyond the importance of stimulation sensory stories can be used to encourage outward engagement with people and objects, to develop communication and to encourage social connections.
  • Children who experience sensory processing difficulties as a part of their condition, (as often co-occur in conditions such as Autism and ADHD) can be helped to encounter sensory stimuli and learn how to regulate and modulate their reaction to these stimuli through using sensory stories. For a child with sensory processing difficulties a day-to-day sensory experience may be overwhelming, as a high pitch noise or fingers down a chalk board might be to someone else. Parents of children with sensory processing difficulties report that with practice their children can learn how to cope with difficult stimuli. Sensory stories can also be used to introduce new stimuli in a fun and safe way, so that when they are encountered in life they’re not so alarming.
  • Sensory stories can be used to encourage engagement with literacy and communication, in this way they can benefit children with conditions not yet mentioned and also children without special needs, and even adults! The more senses you utilise whilst learning the more chance you stand of remembering something (I expect you still remember songs you sang at school, I bet there are certain smells that take you back to times in your childhood) I’ve used sensory stories in universities and at conferences and I’m willing to bet that the people I spoke to still remember them!

Please back The Sensory Story Project so that more children can enjoy these stories.

For more information about the stories please watch the short film at The Sensory Story Project and read the project description. You can also visit http://jo.element42.org to see other articles about sensory stories and to contact Jo.

To find out how Jo is getting on running the project you can follow her on twitter at @Jo3Grace

SEN protection to age 25 – unless you go to university

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

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

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

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

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

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

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

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

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

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

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

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

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

Parent Carer Forums

Debs writes….

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

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

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

What is a Parent Carer Forum?

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

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

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

Who can join a parent carer forum?

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

Taken from Contact a Family website 

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

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

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

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

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

£27.3 Million grant fund to help low-income families with disabled or seriously ill children

I tweeted this earlier, but think if I make a post about it, more people will see it and be able to pass it on to those for whom it will be sorely needed and very welcome. If you know a family like this, please make sure you forward this post or print it out for them. Thanks!

Parents of children and young adults who are disabled or seriously ill will be able to apply for a share of the £27.3 million Family Fund, the Government announced today as it continues its commitment for two years.

Family FundFamily Fund, the UK’s largest grant giving charity, is designed to make life easier for low-income families with disabled and seriously ill children and young people. The money can be used for days out, garden play equipment, computers, toys and kitchen appliances like dishwashers and washing machines.

The Fund helped more than 50,000 families in England last year, from a total of £27 million. The Fund is now in its 40th year.

Edward Timpson, Minister for Children and Families, said:

“Families with disabled or seriously ill children will be able to apply for items and activities that will make a real difference to their family lives. I’m delighted that in these difficult times we’re able to commit to this significant fund for at least another two years.

“We’re also changing the law to make life better for parents who have children with special educational needs. We want to ensure they have the opportunities and support they need to realize their full potential.”

The Family Fund helps families of children with some of the most complex needs – including children and young people with cerebral palsy, attention deficit disorder, autism and sickle cell anaemia. An independent review has found that the Family Fund is the best way to give support to low-income families raising disabled or seriously ill children.

Ian Black, Chair of Trustees for the Family Fund, said:

“Family Fund supported the independent review and the opportunity to gain valuable feedback and evaluation of our work. The comprehensive outcome gave a significant endorsement of our model.

“We are pleased to receive continued funding from the Department for Education and look forward to delivering essential support to thousands of families living on the lowest of incomes raising disabled and seriously ill children, in this our 40th year.”

 To make a grant application, parents should go to http://www.familyfund.org.uk/grants/how-to-apply. Applicants should download the form, check the terms and conditions; complete the form; say what they need to make a difference to their disabled child, young person or family; and send the application pack by post to the Family Fund.

 The Family Fund has 40 years of experience of helping families with disabled children. It helps ease the additional pressures faced by low-income families raising a disabled child by giving them grants for a wide range of goods and services, including washing machines, dryers, fridges, clothing, bedding, sensory toys, computers, much-needed family breaks and more.

Highlighting your SEN Beacons of Good Practice

Debs writes….

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

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

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

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

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

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

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

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

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

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

Special Needs Jungle meet SEN Minister, Edward Timpson

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

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

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

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

snj-ET

Debs (left), Mr Timpson, Tania

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

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

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

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

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

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

It was telling that most had felt a lack of support and signposting but there were several mums who could point to excellent help they had had and we think this could be developed into “Beacons of Good Practice” that the government could highlight as examples to other areas who may not be doing so well. What a great incentive, to have your service win such an accolade!

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

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

charlie

Charlie Mead

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

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

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

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

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

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

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

Draft SEN Code of Practice: Further views

Debs writes….

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

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

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

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

2.3 Parent Partnership Services

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

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

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

2.4 Parent Carer Forums:

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

5.1 Improving outcomes for all

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

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

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

5.9 CAMHS

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

SNJ7-9The good bits?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

However, Health Minister Dr Dan Poulter said:

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

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

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

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

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

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

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

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

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

1. Still no duty on social care

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

What do you think?

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

Children and Families Bill – the missing pieces

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

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

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

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

The good bits:

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

What’s missing?

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

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

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

Tania & Debs

Special Needs Jungle has a new LinkedIn group!

LIgroupWe have exciting news!

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

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

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

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

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

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

Join, share, contribute, make yourselves at home!

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

Early Years Development Journals from NCB

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

One is the Early Years Development Journal.

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

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

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

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

Debs says:

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

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

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

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

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

Children and Families Bill – initial views

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

***

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

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

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

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

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

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

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

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

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

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

Rights & Duties

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

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

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

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

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

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

36 Assessment of education, health and care needs

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

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

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

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

What about disabilities?

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

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

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

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

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

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

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

TanGio-phone_edited-1

He’s not a condition, he’s my boy

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

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

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

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

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Key Working : Whose Job Is It Anyway?

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

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

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

Confused by Key working?
You’re not alone…

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

(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…)

Chinese Whispers and Garth’s Uncle

As you may have read on Friday, Special Needs Jungle has a new regular contributor in Debs Aspland, the director of Kent PEPS and parent of three children, all with disabilities. Today is her first post about the essentials of good communication.

Communication:  the imparting or exchanging of information or news

It sounds so easy.  It requires one person (the sender) to give another person (the recipient) a piece of information.  The communication is complete when the person receiving the information understands what the person giving the information has said.  So why is it so difficult?

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

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

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

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

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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.

SEN Minister offers assurances to parents over Bill wording

 

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

********

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

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

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

You can read the letter at this link

http://www.councilfordisabledchildren.org.uk

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

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

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

***

 

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

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

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

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

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

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

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

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

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

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

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

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

Thank you.

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.

SEN Reforms: professional views to the select committee

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

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

A snapshot of the SEN select committee hearing

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Other points raised included:

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

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

 

Stop the DLA Takeaway campaign – your help needed

Stop the DLA Takeaway campaign – Contact a Family and The Children’s Trust need your help

The Children’s Trust, Tadworth and Contact a Family would like to hear from parents and carers of children who spend long periods in hospital. The charities are asking families to fill out a short survey which could provide vital information to strengthen their “Stop the DLA Takeaway” campaign.

Link to survey: https://www.surveymonkey.com/s/StoptheDLATakeaway2012

The Stop the DLA Takeaway campaign highlights that disabled children who spend long periods in hospital are at risk of having their Disability Living Allowance (DLA) suspended. Current regulations mean DLA payments are suspended if a child’s hospital stay is more than 84 days. The days do not have to be consecutive, so hundreds of severely disabled and sick children, who are regularly in and out of hospital, could be affected.

The Government argues that when a child spends longer than 84 days in hospital ‘a patient’s needs are fully met free of charge’. However, Contact a Family and The Children’s Trust hear from families that they provide the same or more care when their child is in hospital and incur extra costs such as loss of earnings, travel to and from hospital, parking and childcare expenses.

If you are the parent or carer of a child who has spent a long time in hospital you can complete the short survey here: https://www.surveymonkey.com/s/StoptheDLATakeaway2012

This information could help Contact a Family and The Children’s Trust strengthen their call for the Government to scrap the rules that deny some of the UK’s most severely disabled children financial help when they need it most.

For more information visit the Children’s Trust website.

Latest information and advice for families

Contact a Family’s latest updated parent guides include:

Parents can order free hard copies of Contact a Family’s printed guides by calling our helpline on 0808 808 3555.

SNJ on MumsNet – The Paralympic legacy debate

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

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

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

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

 

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

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

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

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

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

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!

SEN and disability stories you mustn’t miss

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

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

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

Tourette’s Syndrome – the facts and resources

A condition that is often misunderstood and that is sometimes seen alongside ASD or ADHD is Tourette’s Syndrome. Often inaccurately characterised as sudden, unexpected outbursts of swearing, which is easy to be the butt of comedian’s jokes, Tourette’s is, in fact, a neurological disorder that can affect different people to different extents.

I was interested to learn more about it and I thought you might be too, so I asked Michelle Kelly, Groups Support Officer for Tourette’s Action to write an article for Special Needs Jungle to explain exactly what Tourette’s is and how it’s treated.

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Tourettes Action – Who we are

Tourettes Action is the UK’s leading support and research charity for people with Tourette Syndrome (TS) and their families.

We want people with TS to receive the practical support and social acceptance they need to help them live their lives to the full.

What is Tourette Syndrome?

Lots of people have heard about Tourette Syndrome (TS) but there are still lots of misconceptions about the condition even though we are becoming increasingly more aware of it. Tourette Syndrome is an inherited neurological condition and although relatively rare, TS affects around one in every hundred school children and a total of around 300,000 adults and children in the UK. The condition is characterised by tics which are involuntary and uncontrollable sounds and movement. A common misconception is that people with TS tend to swear uncontrollably but in fact 90% of people with TS do not and their tics are manifested in other ways, whether verbal or otherwise.

The key feature of TS is that tics are uncontrollable and whilst they can be managed or supressed for a short amount of time they will eventually surface. Symptoms tend to present themselves at around about the age of seven and seem to peak at the onset of adolescence, between the ages of ten and twelve. Tics might start around the head and face and might involve blinking, for instance, or touching and jumping. Vocal tics tend to appear a little later on at around the age of eleven and might involve spoken words or sounds, but can also include coughing and sniffing.

There is huge variation in the nature of tics and the extent to which people with TS will experience them. Tics can change frequently and as one tic seems to disappear another may begin. The severity of the tics can change too and an individual may experience them to a differing degree throughout their lives. It is also thought that the tics can be made worse by stressful events and anxiety. If you would like more information about the causes of tics you can click on the link to our leaflet called what makes us tic?.

The good news is that for many children, the symptoms of TS disappear on reaching adulthood but for approximately half of people with TS, the symptoms will persist. Although the condition is chronic and long-lasting, it can be managed and does not have to impair an individual’s ability to live life to the fullest. Some have suggested that doing something as simple as concentrating on an absorbing task has helped to ease their symptoms a little, or even completely. What can make matters more complex, however, is that TS is also linked to other behaviours and co-morbidities such as Obsessive Compulsive Disorder, Attention Deficit Disorder and Autism Spectrum Disorders.

Managing Tourette Syndrome

Many people who have received a diagnosis of TS will not require medication to manage the condition and will not be significantly affected by their symptoms. There are medications that can help, although as is the case with any medication there are also possible side effects which must be taken into consideration. These medications can have success for some people, however, and so it is important to assess the impact on an individual basis. If you want to learn a little more about the kinds of medications that exist you can click on the link to our medications page where you will find lots of helpful information.

Psychotherapy can also help because it can provide practical ways for people with TS and their families to learn to cope with the symptoms of the condition and its impact on daily life. There are behavioural therapies that exist that can help an individual with TS to manage their tics so that they can become more socially acceptable, or in the event that they are causing pain, become less painful. You can find out more about behavioural therapies by visiting our behavioural therapies page.

There are plenty of relaxation techniques that can help to alleviate some of the stress that may be causing the tics or caused by them. The benefit each form of therapy will have will depend largely upon the individual and their own personal preferences but you can find plenty of useful information on our website or by visiting our forum to see what others have to say about their experiences of TS.

Get in touch to find out more

If you are a parent or carer of a child that you think might have TS and you would like to know who to get in touch with, we can provide you with a list of consultants in the UK. If you would like to know what support groups exist in your area then we would be happy to put you in touch. If you would like to contact Tourettes Action please click to visit our contacts page. You will also find plenty of information about events that are happening around the country and details about how you can get involved.

Useful Resources for Schools

Please find links below to our Key Facts for Teachers leaflet and a link to downloadable presentations on Tourette Syndrome that can be used in schools for teacher training and peer awareness.

http://www.tourettes-action.org.uk/storage/Tourettes%20Action%20-%20Key%20Facts%20for%20Teachers.pdf

http://www.tourettes-action.org.uk/ts-presentations

Jessica Cox: Celebrating Determination

Hope you’re all enjoying the Jubilee holiday.

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

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

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

Research, articles & opinion – special needs news from this week

Tania TirraoroAn incredibly busy week, so I missed my Wednesday post as I was in Brussels to speak at a EURORDIS workshop on social media for rare disease organisations. I was describing how we set up the social media for DysNet, the new Limb Difference Network for which I am PR & Community Manager.

It was a really interesting and exhilarating day, hearing from other organisations such as Bee For Battens, a charity set up by a family who are dealing with the loss of one child and the illness of another with Batten’s Disease. As is so often the case, such terrible adversity and tragedy prompts some people not to hide away but to reach out and help others in a similar position.

We hear so often today about greedy bankers, self-interested politicians and welfare cuts to the most vulnerable.  We hear nowhere near enough about people who, despite their own difficulties, put their energies into offering care and support to those in need. These are the inspirational people that newspapers should highlight on a daily basis – it would, I believe, have a positive effect on the nation as a whole.

And so… I’ve been busy, but not too busy for the ever-popular Friday round-up. Please do read my post about launching DysNet and another inspirational person, Geoff Adams-Spink, if you missed it earlier in the week. Enjoy the sun!

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

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

Autism Eye Magazine – helping you to help your child

In the six years since our sons were diagnosed with ASDs, I have come into contact with a whole new set of parents – those whose children are also affected by autism and other special needs.

These people have very different parental experiences to those with ‘ordinary’ children. Most have experienced the disapproving looks from other parents at the school gates as their child has yet another meltdown; they have fought their way through the jungle of locating services and appropriate education for their children, often through the fog of exhaustion of worry and broken nights.

And yet, they are the most inspiring, determined and dedicated people I know. Some have taken up voluntary positions in support groups to help other, similar parents or have found other ways to use the skills they have to help bring much needed information to families coping with a life they didn’t expect.

Two such people are Gillian Loughran and Mark Hayes who are the parents of a child with autism, as well as both being national award-winning journalists. They  created the quarterly Autism Eye magazine in order to provide in-depth, well-researched, useful information for parents and professionals who care for children with autism.

When their son, Finn, was diagnosed with the condition they found very little information available on how to help him. They launched Autism Eye so that other parents in their position, as well as professionals, could learn much more easily about new research, treatments and therapies that could help children with autism.

As well as a quarterly magazine, Gillian and Mark also publish news and features on the Autism Eye website, which can be found at www.autismeye.com.

Subscriptions to Autism Eye are available as printed editions and digital downloads, and are priced to be affordable to parents and carers. The subscriptions page is here: www.autismeye.com/subscribe

The latest issue has a feature on autism and nutrition – a must read.

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

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

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

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

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

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

Addressing the special needs post-19 provision problem

Provision for young people with special needs after they leave school is a big issue for many parents. Although technically adults, many young people with learning disabilities are far from ready to join the world at large.

A project in Surrey has just been launched to try to fill that gap for some. Project Post 19 was conceived two years ago by Robert Power, an Outreach Teacher who has worked in the special needs sector for over 15 years. Rob works closely with school staff to help students with diverse learning difficulties to achieve their goals in mainstream schools.

From September 2012, Post 19 will be offering a Community Learning Programme, based in Guildford.  The Programme is aimed at young 18-25 year old adults with any learning difficulties across the spectrum.

Rob started Post 19 when he recognised a gap in the community support framework for adults with learning difficulties. The main objective of the Community Learning Programme is to encourage students to work and participate in their own communities.

Each student has his or her bespoke programme which focuses on the use of centres in their local community for example: the library, leisure centre, pub, post office, bank, corner shop, supermarket, available transportation, cinema and community centre. This active involvement with their own community is vital for improving confidence and communication skills.

The organisation is also working with Young Enterprise to create an inspirational programme specifically designed to offer our young adults the opportunity to create and operate their own start-up businesses.

Post 19 strives to educate not only its students, but the community around them as well. They take part in community education and work together with other community staff to offer a strong support network to all of the young adults. Group sizes are limited to between 8 and 10 and the staffing ratio is 1 to 3, depending on the individual needs.

The project is currently undergoing assessment by Surrey County Council’s Social Services Transition Team and Procurement Team in order to be acknowledged as a preferred supplier. Until that process has been finalised, funding for the Programme is by Direct Payment or Personalised Budgets.

Applications are also being submitted to the Charity Commission and the Care Quality Commission and Post 19 hope to be successful with both by Autumn 2012.

You can find the Post19 website at : http://www.post19.com/

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:

Special needs experts offer views for Labour’s SEN policy review

Earlier this week, I attended a meeting at Westminster for Labour’s SEN policy review, chaired by MP, Sharon Hodgson, Labour’s Shadow Minister for Children and Families.

Westminster - Copyright Tania Tirraoro all rights reservedMrs Hodgson is herself the mother of a severely dyslexic son so if anyone understands SEN issues, she does. The issue under discussion in this one of a series of meetings, was early identification and provision. Now, Labour’s record on SEN isn’t stellar, presiding as it did over the closure of so many special schools and the policy of inclusion, which anyone with a real understanding of the needs of children with SEN and disabilities could see just wasn’t sensible.

However, now they are out of power they have an opportunity to reassess and this review is seeking to bring together young people with SEN and disabilities and their families and associated professionals to examine the current SEN landscape. The review is also attempting to crystallise opinions on the government’s SEN Green Paper and to “work towards a clear pledge of what children and young people with special educational needs and disabilities and their parents or carers should be able to expect from education, health and social care services in identifying and providing for their needs.”

Trialling by pathfinder councils of aspects of the Green paper is getting underway, although in Surrey at the moment, it seems there is much up in the air with an abrupt reorganisation of the SEN department and the departure of several senior key figures, including the head of SEN herself, Debbie Johnson. One might ask, who is actually running Surrey’s SEN at the moment and how will this apparently major reconfiguration affect the pathfinder?

At the Westminster meeting, around fifty people concerned with SEN were gathered in Committee Room 14, from the head of the NUT, Christine Blower, the CEO of The Meningitis Trust, Sue Davie, councillors, day nursery providers, the leader of the Association of Educational Psychologists, Kate Fallon, other SEN professionals and parents, like me.

All who spoke, did so with great passion and knowledge about the difficulties faced in providing adequate care and appropriate education for SEN and disabled children. This was focused on the problems surrounding  the timely identification of children whose SEN might not be immediately apparent, in some cases until they reach Secondary level, such as children with acquired brain injury.

Karen Veitch of the National Day Nurseries Association, said how early intervention may be expensive at first but it was far cheaper in the long run, while Kate Fallon said that the current system tends to mitigate against early intervention.

One inspirational mother and daughter team are Nadia Clark and her mother, Katie. Nadia has cerebral palsy and is deaf. She uses a vocal synthesiser to speak, but her indefatigable spirit and intelligence shines through and she soon hopes to go to University. She is the recipient of a Winston Churchill Foundation grant to research alternative methods of communication.

Her mother, Katie, is a woman of great determination and she has worked tirelessly to support her daughter. She spent two years looking for a school that would take Nadia, moving her family across the country to do so. She later formed the parent-carer forum, One Voice Communicating Together and believes the future for SEN & disability services should be about “looking at things differently and more creatively”. She stressed, and I thoroughly agree with this, the need for good emotional support for families in the early years, saying supporting parents’ self-esteem is vital if they are to be able to be strong for their children.

The NUT’s Christine Blower voiced concern over the break up of the schools system and said there was massive pressure on SENCos to work beyond their skill sets. In my own experience, SENCos are also overworked, carrying out several other roles within the school as well.

It will be interesting to see what comes out of the review and I will look forward to reading any published policy that comes about because of it. It was a privilege for me to listen to such committed and dedicated parents and professionals speak so eloquently about services for vulnerable children. I just hope that they are listened to by those who can make a difference at government level.

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.

SEN Stories in the news this past week

Recap of SNJ posts and other news about SEN this week:

Disability groups call for pause for thought in welfare reform

The NAS has today thrown its weight behind a call for the government to reconsider its plans for welfare reform relating to the Disability Living Allowance. The level of fraud for this allowance is very low and thr form that has to be filled in just to apply for it isn’t for the faint-hearted.

This is what the NAS had to say on their website:

We are calling on the Government to pause the Welfare Reform bill and carefully consider its reform of Disability Living Allowance (DLA). The Welfare Reform Bill which will implement these proposed reforms is now in the final stages of its Parliamentary passage but the details of how the reform would affect disabled people have not been fully investigated.

Last week a Responsible Reform report (known as the Spartacus report) revealed strong opposition from disabled people, charities and other interested groups to the Coalition Government’s proposed changes to DLA. The report showed worrying evidence that the Government’s decision to reduce projected DLA expenditure by 20% may have been based on incomplete or misleading data about the reasons for growth in DLA.  It has also been revealed today that the proposed changes will lead to 500,000 disabled people no longer being eligible for this benefit.

Independent surveys carried out by some of the signatories to this letter have shown that cuts to DLA will force more disabled people into poverty, which is likely to increase the burden on the NHS and social care system in the long run. Such a potentially risky change in policy should not be taken forward without a robust and accurate evidence base and the support of disabled people and the experts in this field.

Last year the Government took the bold decision to pause and reflect on its reorganisation of the NHS after similar levels of concern and anxiety from medical groups and patients. Today Papworth Trust, Action on Hearing Loss, Brandon Trust, Campaign for a Fair Society, Disability Rights UK, Disability Wales, Ekklesia, Leonard Cheshire Disability, MS Society, The National Autistic Society, Rethink Mental Illness, RNIB, Sense, Three Cs, United Response and the Westminster Society are asking the Government to show similar foresight and pause the Welfare Reform Bill to investigate the strong concerns raised above. We ask Peers to support amendments to pause the legislation that will affect so many people’s lives.

Source: National Autistic Society

Surely the government cannot ignore such a wealth of disability expertise all telling them that this most vulnerable group of people will be thrown into poverty (not that they’re living the high life now) if their reforms go through unamended. Can they?

Buddy Brilliant! – NetBuddy – A Great Special Needs Resource

www.netbuddy.org.uk is an award-winning website for parents, carers and learning disability professionals. It is a space to hunt for practical ideas, swap tips and access information on everything from brushing teeth to challenging behaviour. Like all good ideas, it’s so simple it’s hard to believe no-one thought of it before. So what gave Netbuddy’s founder, Deborah Gundle, the idea? Goalkeeper trousers!

Deborah’s son Zach has a learning disability.  “When Zach was little, so much of my time and energy was spent solving day-to-day problems,” says Deborah. “One day, I was in a sports shop buying football socks for my other son and I spotted some goalkeeper trousers. They were padded around the knees and the hips, and were perfect for Zach, who was about seven or eight by then and still crawling.”

That’s when Deborah decided to start writing down her ideas for other people to use, and encouraged her friends to do the same. But it wasn’t until several years later, when she met Linda Goldberg – former CEO of the learning disability welfare charity, Cosgrove Care – that the idea for Netbuddy was born.

By-you, for-you resource

Together, Deborah and Linda started collecting practical tips and suggestions from parents, carers, teachers, therapists, health workers – anyone with first-hand experience of learning disabilities. The idea was to create a ‘by-you, for-you’ resource, which people could add to and develop themselves. They wanted Netbuddy to be a place where people could share their ideas, knowledge and experience in a real, practical way.

Netbuddy went online in September 2010, and the response from the learning disability community was immediate. “This is such a brilliant idea! Nobody really knows how to cope with the day-to-day nitty-gritty unless they’ve experienced it personally,” wrote one parent. “I wish there had been something like this when my son was young,” said another.

Since launching the site, tips have been coming in on all aspects of caring for people with learning disabilities; everything from bed-wetting to hair cuts and new sections are being added all the time.

“We respond to what people want to see on the site,” says Linda. “If we get lots of tips in an area we haven’t thought about, we simply create a new section. That’s the beauty of Netbuddy – it’s completely interactive.”

If there is a lot of information on a specific topic, it is used to create an ‘information pack’. The latest packs are on sexuality and relationships, holidays for people with learning disabilities, arts and leisure opportunities and apps for the ipad.

Interactive forum

In addition to the tips sections and information packs, Netbuddy has a forum where people can post specific practical issues they may be having, or share their own break-through moments. There is also a thread for people to celebrate their good news within a community that understands the hard work behind those successes. Netbuddy’s forum hosts an ‘Ask an expert’ section, where people can post specific questions to specialists in their field. Currently, there is a learning disability occupational therapist, an adaptive technology specialist, a parenting siblings advisor and a speech and language therapist – all have proved very popular.

“I think the reason Netbuddy has really hit a chord is because there is nothing else quite like it,” says Deborah. “It’s there 24 hours a day so you can get practical help whenever you need it. It works because people in the learning disability community like to support each other. If there’s an opportunity to help someone else, they nearly always will.”

The challenge now for Netbuddy is to encourage more professionals to start using it – teachers, doctors, nurses, pediatricians, social workers, therapists, health workers and others. Some have been quick to see the potential, like health coordinator Kath Ingram, who regularly checks Netbuddy for tips.

“I love the tips on teeth cleaning, which can be so problematic for parents and paid carers,” she says. “I’ve printed out information from Netbuddy and ordered samples of recommended items to show people on visits.”

Professional help

For doctors, there are sections on encouraging people to take medication, hospital stays and medical appointments. The communication section has obvious uses for speech and language therapists, and there are lots of tips on dressing and clothing for support workers. But it’s not just healthcare professionals who stand to benefit. Teachers can also pick up useful tips from Netbuddy – activities to do in the classroom or ideas for keeping class outings safe and easy.

“Netbuddy is a goldmine of useful information,” says Deborah. “We hope people will use that information and share it with carers – either print it out or pass on the email address. When you help a carer you directly help the person they’re caring for, so it’s really important to support carers.”

 For more information visit www.Netbuddy.org.uk

Parents rate local authority Disabilities service at 59%

When I was at school, a score of 59% definitely meant ‘could do better’, if not ‘should do better’. But that’s the score received by 10 local authorities in England for their disability services.

The survey, completed by the British Market Research Bureau on behalf of the government was intended to measure parental experience of services for disabled children. The survey and indicator have been developed as part of the Aiming High for Disabled Children programme.

It is the first ever national survey of parents’ views of services for disabled children. Parents completed a questionnaire asking for their views of health, social care and education services for their disabled child as experienced in the past year.

Srabani Sen, Chief Executive of Contact a Family said, “The views of parents should drive local authorities and primary care trusts to ensure that the right services are available to meet the needs of disabled children and their families. This new data is vital in emphasising the key part that parents and families have to play in improving services for disabled children. We know that these services work best when parents are involved in their design and delivery, and I hope that local areas will be able to use the results to continue the good work that many of them are already doing to engage with parents and develop services together.”

The fact that they are measuring this to determine a baseline for future improvements is great, but 59%? Just over half? That’s a lot of people who are dissatisfied with the care and education their disabled children are receiving.  It is clear that this kind of rating of services is long overdue and that many local authorities need to try harder to provide a satisfactory service to vulnerable children who need the greatest help.

My hero – Geoff Adams-Spink

This is an item about a hero of mine, Geoff Adams-Spink. Geoff is a BBC correspondent whom I met when we were both training to be journalists on a Post-Grad course in Falmouth. He has worked extensively across the BBC and has never let his disability prevent him from achieving his goals.

Of course, he’d never have got as far as he has if he wasn’t jolly clever, a world-class wit and superlative speaker as well but he is also an example to my boys that whatever difficulties you may have, they are surmountable with a shed load of grit and determination.

My boys have different disabilities to Geoff, but it is my hope that they will never let their own challenges stop them following their dreams.