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.

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?

(more…)

I want your statementing stories

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

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

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

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

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

Thanks!

Tania

Poll results – Should children with Asperger’s automatically be statutorily assessed?

Last year I published a poll on this site asking whether people thought children diagnosed with Asperger Syndrome (quick, use the term before it’s abolished!) should automatically receive a statutory assessment by the local educational authority.

I posed three potential answers:

  1. Yes, because teachers aren’t trained to spot underlying difficulties
  2. No, we should just see how they get on
  3. No, we should trust the school to decide what level of help they need

Now, I assume that most of my readers are parents with SEN children but there are also readers who have a professional interest in SEN, so I admit that the results may be skewed somewhat. Having said that, a whopping 96 per cent of respondents thought that AS is so complex in its presention that children with that diagnosis should receive a professional, school-based assessment to determine their special needs.

This isn’t to say that they should all be statemented (or get an EHC Plan as it will be), but most respondents believed that it is important to understand what their needs are and how they can be met to level the playing field, giving them an equal chance of success at school and beyond.

3% though we should see how they get on and just 2% thought that teachers were best placed to decide the level of help required. There were more than 150 responses.

I am a firm believer that school success and success as an adult does not depend on academic achievement alone. We all hope that our children, whether they are ‘normal’ or whether they face additional challenges, will grow up to be rounded, socially adept individuals. Even in this age of web interconnectedness, knowing the correct social response in a face to face meeting is still vitally important. We are, after all, social beings.

I know this only too well from my own sons. Even though our eldest is incredibly bright, we could see that he had many social difficulties and these, in turn, affected his school experience and academic achievements.  We did not want him to turn out to be an angry alienated genius and, thanks to interventions, support and the right school, he won’t be. Without an assessment that I fought for and drove forward, we might still be asking ourselves.. but he’s so bright.. why does he do this or that, it makes no sense.. (I’ve talked about his issues previously, with his agreement, now he’s a teenager I have to be careful what I say).

I say whatever you call Asperger Syndrome in the future, and whatever you replace statements with, when parents suspect their child has social difficulties they should always raise the issue with teachers and do their own research as well.

Some difficulties experienced by children with high functioning ASD can seem obscure and hard to verbalise. Yet if they go unaddressed, they can end up having a long-term negative impact on a child well into adulthood. I believe that every child on the spectrum should have an Ed Psych or Outreach assessment so that teachers who are not experts in autism (nor would most claim to be) can be given help to ensure that every pupil they teach has a fair chance of a decent learning experience.

Have you ever applied for a Statementing Assessment for your child? If so, take this poll!

I’m carrying out a poll into how people fare when they initially apply for a Statutory Assessment for their child. If you’re been through it please take the poll and share the poll with as many people as possible. The results will be published in the New Year. Thank you!

Book Review of Special Educations Needs: Getting Started with Statements

Special Educations Needs: Getting Started with Statements – the parent to parent guide to getting your child the help they need

Reviewed by NAS Surrey Branch member Emma Searle, mother of a 4 year old recently diagnosed with ASD

SEN-Getting Started With Statements

“This is a brilliant little book. We are just starting on the statementing process and it’s a bit depressing to find that it’s such a battle, but it is refreshing to get an honest and real account of what happens. I really liked the detail on the process – for example, I hadn’t realised that you don’t have to stick to the form to give your evidence, but can write your own account. It was really useful to have all the detail and being able to read extracts from other people’s statements is invaluable.It shows you how to use the SEN Code of Practice – I haven’t seen any other examples of this. Because it’s written by parents for parents, it can give you information you don’t get on official we sites. I found it quick and easy to read and easy to dip into when you’re waiting at school for example.”

A huge thank you to Emma for taking the time to write the review and I hope very much the book has helped you so far. If anyone else has found the book useful and would like to leave a review, I would be delighted if you would post it on the Amazon book page

IPSEA – A wonderful charity for free advice and support for SEN

In my book, Special Educational Needs, Getting Started With Statements, I make several references to a special educational needs charity called IPSEA.

IPSEA provide free advice and support for people who have children with SEN and offer an invaluable service. Today I am delighted to have a guest post from the charity’s Chief Executive, Jane McConnell

Jane McConnell, Chief Executive of  the Independent Parental Special Education Advice charity or IPSEA, became an IPSEA volunteer 10 years ago. She has been a paid IPSEA staff member for the last 7 years and has a 12 year old son with complex SEN. Jane has overcome several substantial hurdles to get the right education for him and has firsthand experience of what thousands of parents have to go through. Here, she explains what IPSEA are all about and how the charity can help you:

What is IPSEA?
IPSEA is a registered charity providing free and independent legally based advice for parents whose children have SEN / disability. We have been supporting parents since 1983. IPSEA covers England and Wales. We use highly trained volunteers to deliver all our advice and support. We offer more support to the most disadvantaged families. A small team of paid part time staff co-ordinate and train our volunteers.

What does IPSEA do?
IPSEA advises families whose children have all types of SEN / disability, including behavioural problems, communication difficulties, learning disabilities and autism. IPSEA often helps families before their child has even been diagnosed. IPSEA’s legally based advice gives parents the confidence to exercise their rights. This basic understanding of the law equips families to be more involved in the decisions that affect them and helps them to avoid future issues. IPSEA helps around 3,000 families each year – thanks to our dedicated volunteers and supporters.

How can IPSEA help me?

IPSEA offers parents the following free services:

Common problems

Many simpler and common issues with the SEN system can be resolved with the help of IPSEA’s on-line resources:

What parents say about IPSEA

Our website has quotes from parents we have helped. We survey the parents that have used our services to ask them for feedback. Their feedback helps us improve our services and secure the funding we need to keep them going.

Using parents’ experiences to influence change

IPSEA gathers evidence and uses it to lobby for changes to current legislation. We also attempt to correct the practices of local authorities whose policies are not in line with legislation.

1,039 people took part in our SEN Green Paper survey. 796 of them were parents of a child with SEN. They agree with IPSEA’s strong belief that parents’ views need to be listened to and respected by the professionals responsible for assessing and educating their children. Without this basic respect, mistrust builds up. This can have a detrimental effect throughout the child’s education. IPSEA’s full response to the SEN Green Paper proposals is here .

IPSEA works constructively with the government. We were particularly pleased that the new administration activated the right of parents to make an appeal to the SEND Tribunal if their child’s Statement did not reflect the needs of the child.

We gave evidence to the parliamentary education committee on the SEN Green Paper. We also successfully campaigned to protect legal aid for SEN appeals.

Keeping IPSEA going

It costs IPSEA around £30 to provide telephone advice to a family and around £300 to provide a tribunal caseworker. We appreciate all the donations we receive. You can donate using PayPal or debit/credit cards. You can also set up regular donations.

IPSEA is always looking for more volunteers. You need to complete our training first. This training is very thorough so we ask you to commit to actively volunteering with us for at least 2 years. “I enjoy the feeling of empowering parents – talking them through their problem and sending them off with a clear plan of action” says one of our experienced volunteers.

SENAC for Special Needs Advice in Northern Ireland

If you’re in Northern Ireland and you’re looking for help with getting your child the special educational needs support they require, there is a service for you. The Special Educational Needs Advice Centre, or SENAC,  is a regional charity set up in 2003.

They provide FREE independent advice on behalf of children and young people with disabilities and special educational needs (SEN) attending schools in Northern Ireland up to the age of 19 years. SENAC offers  information to parents and carers on all aspects of the statutory framework of SEN provision in Northern Ireland.

SENAC also offers an individual advocacy service for children and young people and work with parents to facilitate positive communication with schools and assist them to make more meaningful representations of their child’s needs.

SENAC OFFERS:

  • An independent and confidential telephone advice-line service, providing advice and information to parents/carers at all stages of the process for the Assessment and Statementing of Special Educational Needs.
  • Written information and guidelines on the Assessment and Statementing procedures both on this website and in print on request.
  • Assistance to parents in understanding policies and procedures in relation to their child.
  • Information on contacting other relevant organizations.

SENAC operates an Advice Line on 028 9079 5779. Further information can be obtained from their website www.senac.co.uk

About SOS!SEN, a fantastic SEN charity

SOS!SEN is a small charity based in Middlesex that offers a fantastic service to parents who are trying to secure the right educational support for their children. It was started by a small group of individuals who had spent much of their lives in education or related services. They now have a team of volunteers made up of parents and friends who have children with special education needs. They deal with an ever growing number of cases, including representing parents at the SENDIS Tribunal.

SOS!SEN have a telephone hotline and lots of useful information on their site. They are well-versed in the tactics of local authorities and during 2009, the SOS!SEN helpline fielded 6,000 calls. About 30 per cent were new referrals.

They offer a free, friendly, independent and confidential telephone helpline for parents and others looking for information and advice on Special Educational Needs (SEN). We concentrate on helping people to find their way through the legal and procedural maze which is so daunting to so many who try to obtain satisfactory provision for a child’s special needs.

Their aim is to empower parents and carers, and to encourage them to become sufficiently confident to tackle for themselves the obstacles and difficulties that arise in battling for SEN rights. In turn, they hope they will use their knowledge and experience to help others.

They offer our services throughout England and Wales and run monthly walk-in advice centres in Twickenham, Thornton Heath and Aldershot, so that parents from surrounding local authorities such as London, Surrey, Hampshire, Kent and Middlesex can come to see them, if they have a particularly complex problem.

They are also launching a series of workshops that will be very useful for parents to attend about the various stages of statementing.

If you are on the statementing road and you encounter problems, do get in touch. The workshops mentioned above will help get you started as well.

Paperback of my Statementing book now available at Amazon

SEN-Getting Started With Statements

Great news! The paperback of my SEN parents’ book, “Special Educational Needs – Getting Started With Statements”  is now available on Amazon.

It currently says out of stock but it’s only gone on today and you should be able to order it, with free delivery. It’s also available in Kindle format and hopefully, Amazon will get around to linking the two pages as soon as they can.

If you buy it, and find it useful, please post a review on Amazon to help others.

Please share this post as widely as you can to inform other parents who may be helped by the book. Thanks!

http://www.amazon.co.uk/dp/1908603585

New Foundation Launched to Support Children with Special Educational Needs

A new foundation which will enable practitioners to join together to provide multi-disciplinary specialist services for children with special educational needs is being launched next month – and could transform the present fragmented and bureaucratic system.

The Clarity Foundation hopes to attract health and social care providers, as well as education specialists, to join as members who can be referred to families and local authorities as approved providers meeting statutory guidelines.

The foundation is the brainchild of speech and language therapist Janet O’Keefe and Robert Ashton, best selling business author, social entrepreneur and campaigner, who are passionate about providing a new joined-up efficient system which supports children and their families with educational support, while at the same time eliminating unnecessary duplication and bureaucracy.

It will be launched at a conference entitled, Towards a Positive Future, aimed at parents and professionals, to inspire, share experiences and discover how they can achieve more for children with special needs. The conference is being held on October 14-15 at Arlington Arts Centre, Newbury, which is based at the Mary Hare School for deaf children.

There are currently 1.7 million children with special educational needs in England who require support for wide ranging conditions, from dyslexia, dyspraxia and Down’s syndrome, to autism and attention deficit hyperactivity disorder.

Janet says: “We believe that having a one-stop shop is the best way to enable parents and local authorities find all the support services desperately needed by children with special needs, and that our foundation is the most practical and efficient way of ensuring that those services are integrated and coordinated. We need to bring practitioners from health, education and social care together and plan for the future while the present guidelines for new contract arrangements is under review. Our foundation will be a valuable database of all heath and social care providers, as well as education specialists.

“Additionally, we can streamline time consuming and expensive administrative processes. For example, we can help with criminal bureau checks and professional indemnity insurance. At the moment, if a practitioner is not directly employed by a school or local authority, every school they visit should conduct its own CRB check. Many practitioners regularly visit 20 schools a week sometimes in several different counties and are therefore checked 20 times.”

Robert says it makes good sense to become more efficient during the present shake up of these services:

He says: “However you feel about the Government’s “Big Society” agenda, the fact is that the worlds of education, health and social care are undergoing massive change. The Clarity Foundation is being formed to help parents make sense of those changes, and in parallel to help practitioners create their own enterprises. That way both groups can connect, create opportunities and meet the needs of young people striving to overcome disadvantage.”

Specialist speakers include educational psychologist and former head teacher Charlie Mead, who has worked with children with severe emotional and behavioural problems and special needs for 20 years. He has grave concerns about the present system and highlights failures he has observed, leading to neglect in some cases for vulnerable young people.

He says: “Charities are afraid to stand up for their clients in case their funding is withdrawn. Academies are afraid of further failure by taking on exactly those students who would benefit most from their resources. Children and Family Services have neglected the vulnerable due to bureaucratic inertia and a lack of consistency. All these situations can be changed if the interests of the child are put first.

“When working with highly vulnerable children in care, many of whom have been sectioned, it is clear that the recession is having a considerable impact on the young people and their families – especially those who cannot cope emotionally, are addicts, are sexualized early and have been abused. They need expert consistent provision – not piecemeal services from organisations who are threatened by lack of funding.”

Other key speakers are Kevin Geeson, CEO of Dyslexia Action, who will highlight the impact of the SEN Green Paper; speech and language specialist Prof Heather van der Lely, who will highlight her simple test for an early diagnosis of specific language impairment; and both Sandy Burbach and Alex Kelly, who will describe the importance of developing social skills and self esteem in children.

Janet is also launching a book she has edited at the conference also called Towards a Positive Future which includes stories, ideas and inspiration from children with special educational needs, their families and professionals.

Full details about the conference can be found at their website, Towards a Positive Future:http://towardsapositivefuture.wordpress.com/

There is a range of ticket prices: parent £90 (one day) £155 (both days); second parent £60 (one day) £120 (both days); professionals £200 (one day) £385 (both days).

Source: PRWeb

 

Should children with Asperger Syndrome automatically be statutorily assessed?

What’s your opinion – should children diagnosed with Asperger Syndrome automatically be statutorily assessed? I think they should because despite seeming to ‘cope’ in a regular class, so many children suffer psychological difficulties that goes unrecognised in busy classrooms. An assessment could open doors for them to get the psychological and educational support they need to thrive.

Others may say of course, that they should be left to get on with things and only have intervention when really thought to be needed. My argument against this would be that teachers are not sufficiently trained in spotting the difficulties encountered by AS children (and why should they be – they’re mainstream teachers after all, not special needs teachers) and in order to access the curriculum to their best, it would take an expert to assess them. Then, the correct level of help can be determined and the child has the best opportunity to get the right help.

Or maybe you have a different opinion on this? I’ve set up a poll on poll daddy for you to give your opinion Either way – please take the poll at the link below or leave a comment.. or both!

Back to school – but is it the right one?

For the first time since my sons started at their special school, this term we have had no fees to pay as they are both now being funded by the local LEA. I’ve written in post passim about finding our way through the special needs “jungle” of statementing and I hope if you are in that position now you will find some of the things on this site useful.

Indeed, I am only too aware of how many people are going through the process and are having a much tougher time of it than we did. We applied at a time when our LEA was reassessing the way it looks at Statutory Assessment, Statementing and Funding. For children with high-functioning AS, like our boys, it recognised that it had little suitable provision and that these children, who may have so much potential, so often fall through the cracks. They may end up in the benefits or mental health care system when they become adults because they have not received the social education they needed and cannot put to use  any academic education they gained into a worthwhile career. Or any career.

If they are lucky, they may have had supportive parents and may have been able to progress to university and into a job in a narrow-focused industry (sciences, accounting, research) where their ability to do the job is more highly prized than the ability to make lively and reciprocal conversation. These are likely to be the young people from the very highest and most able end of the spectrum, who are from middle class backgrounds with university educated parents themselves.

But too many AS young people will be in low-paid jobs far below their intellect because they cannot cope with the social interaction needed to progress up the career ladder and they have not had access to or found a route through to the support they need to thrive. Others may find their ASD so disabling that they will have to live in sheltered accommodation, relying on Disability Living Allowance and other benefits.

Now, it is not true to say that if you don’t reach the top of a well-paid profession you won’t be happy. For many people with AS, happiness comes just from having a friend to talk to or being able successfully to cope with everyday living. Many people with AS get married and have families of their own and are perfectly happy within their own circle, thank you very much.

But just think how different it could be if everyone who was diagnosed with Asperger’s Syndrome got the help they needed at an early enough age for it to make a significant difference to the outcome of their life. Yes, some may still need to live in sheltered housing and will work in in low-stress jobs because their condition dictates it. But for others it could mean the difference between a life of just coping and a life of thriving. Every single person with AS should have access to the right kind of education that my boys are lucky enough to be getting.

Parents who are worried that there my be something socially ‘different’ about their child should not just bury their heads in the sand and hope they will ‘grow out of it’. They should not just shrug and say their child is ‘coping’ at school when you really know they are just keeping their heads above water. Your kids have one shot at education and one shot at a successful and happy life and it is the duty of their parents to ensure they have the best opportunity of achieving that. Even if the option of a specialist school is not open, you can speak to your school’s SENCo, make your concerns known, ensure they are getting appropriate support at school and do your own research as well. Parents’ instincts are not often wrong.

I am speaking here from experience. We were once in the position of knowing something was different about both of our boys but not what to do about it. I spoke to their teachers, I researched their symptoms, I got them referred to a paediatrician. We got a diagnosis. We were told we’d never get a statement for either boy as they were too able so not to bother trying. We were told they had to be three years behind to get a Statutory Assessment. We were told all sorts of inaccurate things by teachers who didn’t know any more about Statementing than we did.

We didn’t listen and now we have two statements for both our sons who are both in the top few percent for ability. More than that, our LEA is paying for them to go to the school of our choice where they can be supported. It can be done. Your battle may be harder than mine; you may have to go to Tribunal. You may live in one of those LEAs like Hampshire that think brinkmanship is the order of the day. These councils will oppose you to the very last second in the hope that you will be scared off or you will end up broke, broken or both. They don’t care as long as they don’t have to shell out for your child. Shame on them, but do not be deterred. Even when you are tired and stressed and thinking of giving up, remember who you are doing this for and that they deserve the best you can give them.

If you need advice you can always leave a comment here and I will try to help or point you to someone who can. And things are changing. There are politicians out there who know about special needs, and parliamentary candidates such as Maria Hutchings who are fighting every day to improve the situation for young people with ASD. We just need to get the ones who are actually in the government to make sure that reviews that are currently being undertaken are acted upon so that the next generation of young people on the spectrum don’t face the same uphill struggle as ours do.

Many autism cases ‘undiagnosed’ – BBC News

A significant number of children with autism and related disorders could be undiagnosed, a study has suggested.  (Reports BBC News Online)

A Cambridge University team looked at existing diagnoses – and carried out recognised tests to assess other children. Of the 20,000 studied, 1% had an autistic spectrum disorder, 12 times higher than the rate 30 years ago. Autism experts said it was crucial to have accurate data on how many children were affected by the disorder.

The research, published in the British Journal of Psychiatry, was carried out in three parts. The scientists first looked at cases of autism and Asperger syndrome among 8,824 children on the Special Educational Needs registers in 79 schools in East Anglia. A total of 83 cases were reported, giving a prevalence of 94 in 10,000, or 1 in 106 children. The team then sent a diagnosis survey to parents of 11,700 children in the area. From 3,373 completed surveys, 41 cases of autism-spectrum conditions were reported, corresponding to prevalence of 1 in 101.  This 1% rate confirms estimates from previous research.

They then sent the Childhood Autism Screening Test (CAST) to the same parents to help identify any undiagnosed cases of autism-spectrum conditions. All those with high scores, plus some who had medium and low scores, were called in for further assessment. The team found an additional 11 children who met the criteria for an autism spectrum condition, but had not yet been diagnosed.

The researchers say that, if these findings were extrapolated to the wider population, for every three known cases of autism spectrum, there may be a further two cases that are undiagnosed.

Professor Baron-Cohen said: “In terms of providing services, if we want to be prepared for the maximum numbers that might come through, these undiagnosed cases might be significant. “It is important to conduct epidemiological studies of autism spectrum conditions so that the relevant services, including education, health and social services, can plan adequate provision for all those children and adults who may need support.”

Mark Lever, National Autistic Society chief executive, said: “This is important research, which for the first time gives us an estimate of the number of people who don’t have an autism diagnosis but may be in need of support.

“Getting the right support at the right time is vitally important and access to appropriate diagnostic services is crucial.”

He said the NAS was campaigning for statutory guidance for diagnosis included as part of the proposed Autism Bill to try and improve improvement in local authority and NHS services.

Source: BBC News

Update on Special Educational Needs and Disability (Support) Bill

Source: Epolitix: Conservative MP John Bercow makes the case for his Special Educational Needs and Disability (Support) Bill, which has its second reading in the Commons.

Through my work conducting a review into children’s speech, language and communication services for the government, I already knew that children with special educational needs (SEN) were frequently being let down.

But the degree to which this vulnerable group of children are being failed by the school system was brought into stark reality when I saw the government’s scandalous exclusion figures. Children with SEN are nine times more likely to be excluded than any other children. So when I was drawn out of the private members’ ballot back in December it was a compelling opportunity to try to do something about the devastating lack of support that is leaving this vulnerable group of children unable to reach their full potential.

Far too few education professionals and schools have the appropriate skills, expertise and training to give the one in five children with an SEN the right support. There is no mandatory training for teachers in SEN issues, and despite their crucial role only new special educational needs co-ordinators (SENCOs) will be expected to demonstrate their SEN knowledge from September this year.

This step forward is due to campaigning by the National Autistic Society (NAS) and others, but, even so, many SENCOs will not be covered by the requirement. My SEN Bill is drafted by the NAS and backed by the Special Educational Consortium. It has its second reading in Parliament on Friday May 15 and it aims to improve training for teaching staff, introduce a new requirement that inspections should consider how well schools meet the needs of pupils with SEN and disabilities such as autism and reduce inappropriate exclusions of children with SEN.

The profound difficulties which children with SEN experience at school frequently go unheard and unrecognised, because their support is not reviewed and Ofsted inspections often ignore whether schools are meeting their responsibilities towards them. This is simply unacceptable, and schools and education authorities must be made accountable for the support that they provide. As a result of pressure from the Bill, children’s secretary Ed Balls has already committed to look at how Ofsted inspections can have a greater focus on SEN, so my Bill aims to ensure this becomes a reality.

I urge as many of my colleagues as possible to join me in Parliament on Friday to ensure vulnerable children get the support they need to reach their full potential, because when the right help is in place at the right time, children with SEN can and do flourish in school.

Source: Epolitix

Read the minutes from the second reading here

See also: Well said, Br Bercow!

Mother Needs Help For Self-Harming Son

I have just been contacted through this site by Sharon, a mother from Kent, whose son has been excluded from school following incidents of self-harming.

She writes, “My ADHD, ASD, Dyslexic, self-harming son, has just been excluded from school, because they don’t think Luke trying to strangle himself in class or him regularly saying he wants to kill himself, is a good role model for the other pupils. Their answer, discriminate (against) Luke for his disability. He needs support, not rejection and that’s all this exclusion is to him, rejection!”

This is apparently the second time Luke’s school has excluded him. His mother, Sharon, believes it is not Luke’s fault but it is because the staff in his mainstream school are not trained to deal with ADHD or Autistic Spectrum children.

Sharon is at her wits end. She says, among other self-harming incidents, her son has also tried to hang himself in the school’s P.E. cupboard. I have recommended that she contact SOS!SEN. Luke has been refused a Statutory Assessment Kent LEA and his parents have appealed to the SENDIST tribunal, which will be heard later this year.

Sharon says, “It looks like Luke will not have a secondary school to go to this year. The tribunal is only for a Statutory Assessment, then we need to go through the whole process yet again for a statement! We have already been to CAMHS for over a year now. No counselling, he was put on a waiting list for a ASD assessment, but there was a 13 month waiting list for that. The last time we went to CAMHS a new Dr. saw Luke and we now have a diagnosis of ADHD & ASD tendencies. Were awaiting a dyslexia test, and counselling for the self harming, which is quite evident to everyone, but they chose to ignore it, or put it down to bad parenting!”

Sharon says that Luke’s primary school failed to get him the help he needed and his problems are now worse as a result. I don’t know all the details of Luke’s case but it certainly seems to be an impossible situation to be in. However, it isn’t sadly, unique. Why is it that children in severe need of help with psychological problems are so often failed by those professionals around them?

I send my best wishes to Sharon and hope she manages to get the education and counselling for Luke that he deserves. If anyone reading this can offer free legal or medical advice to sharon, please contact me at info@specialneedsjungle.co.uk or make a comment below. Thank you.

Great News – A Statement!

Got the news we had been waiting for today – Son1 has got the Statement of Special Educational Needs we had applied for. Don’t have all the details yet and we still have to sort out placement (which if I have anything to do with it will be his current school).

This time last year the head of our school’s Learning Support department told me I should apply for a statement for Son1. I thought she was mad, because he is achieving well although his educational profile is uneven and his progress is affected by his social and communication difficulties caused by his Asperger Syndrome. Still, I thought, she wouldn’t say it if she didn’t mean it. We had been through the process before withour younger son and he is now funded at their independent special school by the Local Education Authority and I didn’t relish another trip down the same road. Still, I reminded myself, it’s not for you, it’s for my boy, took a deep breath and plunged in.

I started out by applying for an assessment, which was initially turned down (see earlier post). After they reversed the decision and carried out an assessment, it went to the area special needs panel yesterday and the news came through that he had been given a statement.

It does beg the question, why was he refused an assessment and then is given a statement and I think this is largely down to the ‘new broom’ approach at the local LEA.

I now have to convince them that paying for him to attend his current independent specialist school is the right thing to do, so no time to waste! It does show however, that if you do your research, persevere (like I said, I started this path a year ago) and you are sure of your case, then you can come out with the result you believe your child should have.

It may take longer than a year for some, depending on whether you need to appeal, but I was originally told neither of my sons would get a statement and now they have one each. I used the methods I have described on this website (see links at the top of the page) both times. So, anyone reading this who is onthe same road, take heart and don’t give up!

See the outcome here

New SENDIST rules

At the same PWP workshop, Simon Oliver, Deputy President of Care Standards Tribunal and judicial lead for SENDIST management team gave a presentation about the new SEND rules. He wanted to set minds at rest about the changes, particularly to the notion that all evidence had to be in by the two-month deadline. He said as long as you appealed by the deadline and told them when the evidence would be available, that was okay.

He also spoke about Case Management – the process intended to provide clarity at an early stage about what needs to be done and by whom, to ensure the Tribunal has all the information required. These include telephone hearings where it might be possible for the sides to be heard by the judge over the phone and the matter to be resolved before a Tribunal hearing.

Among many others, he made the following points:

  • At Tribunal, parents must set out in as much details as possible what it is they want from the LEA and for their child.
  • Appellants should note the new 5pm deadline for appeals, rather than one minute to midnight as previously.
  • The Tribunal is not bound by LEA policies, but by the law governing SEN education.
  • The views of the child concerned will be taken into account
  • Trainees would now be allowed to be observers, as long as permission is sought.

Simon Oliver said that he firmly believed the new rules meant that fewer cases should actually end up at Tribunal and fewer cases would have to be adjourned because of missing documentation. Updates on the process changes canbe found at http://www.tribunals.gov.uk/Tribunals/News/news.htm

Surrey to review SEN Assessments

I recently attended a Partnership with Parents workshop in Surrey. The subject matters were an explanation of the new SEND rules given by one of the co-chairmen,an update on the Lamb inquiry and a presentation from the new Head of Surrey SEN, Debbie Johnson, asking ‘Why do so many parents appeal against Surrey’s ‘Refusal to Assess’ decisions’.

I was particularly looking forward to the latter, as although my younger son is statemented, my eldest son had recently been refused an assessment by Surrey. Ms Johnson was a very impressive speaker and was concerned about Surrey’s position at the top of the charts for councils that have appeals registered against it. Much to the surprise of many in the room, she said that what should be happening is that if Surrey LEA was not going to defend its decision at the SEND Tribunal or thought it might give way if an appeal was launched, then it should actually not be refusing to assess in the first place. This was new! Someone with common sense! We all sat up a little straighter.

Ms Johnson said there was a lot to be done in Surrey and the feedback she was getting was that parents weren’t being listened to, the process wasn’t helpful and she was going to change that. She said the changes had to ‘unbend the system’ and make statements ‘fit for purpose’. She would be disbanding panels that took parents around in circles and stop decisions being made that were not clear for either the parents not the authority.

It also appeared from figures she presented that, that in line with the large number of refusals to assess was an equally large number of pupils in Surrey diagnosed with ASD. Could these stats be related? Could it be that a lack of expertise within county provision in the field of high-functioning Autism and Asperger’s, coupled with an increasing number of parents unwilling to go down without a fight is at the root of Surrey’s large number of appeals? As Hong Kong Phooey would say .. ‘Could be!’

Ms Johnson then described the difficulties faced by a highly intelligent child with Asperger’s in a mainstream setting. She described my son to a tee. Afterwards, I spoke individually to her and she agreed to visit my son’s case again.

And guess what? True to her word, this week I heard that the decision has been reversed, my son is now going to be assessed and I am so relieved that this part of the application is now resolved. There was also additional evidence I presented to them as part of the reconsideration and I am sure this made some difference; having been turned down I had sprung into action and prepared an fulsome appeal so I was able to send it to them to see if we could avoid the necessity of going to Tribunal and it seems this has had an effect. The lesson is, if you believe strongly in your case, DO NOT give up! Those who make the decisions are only human, just like you, errors can be made or minds can be changed if you provide a convincing enough case. But you have to put the effort in – don’t ask and you don’t get.

Back at the workshop, in spite of her ‘new broom’ presentation, Ms Johnson wasn’t let entirely off the hook – many parents had serious grievances about the LEA’s past practices, including one family who had been threatened with costs (illegally) if they went ahead with a Tribunal hearing the next day. To her credit, Ms Johnson tackled the issues head on and took the particular case mentioned extremely seriously. I might pity the hapless LEA employee who made the threat if it hadn’t been such an unethical thing to do in the first place.

I left feeling vaguely cheered, though it remains to be seen how much difference Ms Johnson’s new broom makes to the way Surrey carries out its practices. I, and parents like me, will be watching closely.

See the next post ‘The SENDIST Tribunal’ for information on that part of the workshop.

SEN Assessment Form Part 2

Further to the earlier blog ‘The SEN Assessment Form – Yikes!’ I thought it might be useful for some people to provide a template to help people get their thoughts down so you’re not facing a blank piece of paper. You can download it below, in MS Word format. If you need it in pdf format, just email info@specialneedsjungle.co.uk and I’ll be happy to send you one.

where-to-start (MS Word doc)

The SEN Assessment Form – Yipes!

A few people have mentioned to me how daunting they find the form that comes for you to fill in to apply for a Statutory Assessment for your child. They’re worried they’ll forget something, they won’t phrase what they want to say in the right way, or that they’ll just do it all wrong and blow their chance.

I don’t know how every LEA approaches the application; whether they all send out a form or whether some do it another way. Ours send a form with questions and boxes to write in your answers as a guideline to help parents know what to include. The LEA has made the form in the first place because they do actually want to help find out what a child’s issues are. The problem is, it often makes the task more difficult because some people may think that’s all they can put in, or leave stuff out that needs to be in because there was no obvious place to put it or stop at the end of the box because they think that’s all they’re allowed to write.

I would suggest putting the form to one side, sitting down at your computer or with pen and paper and just writing your child’s story. You, bar no-one, know them the best. You are the one who has agonised over your child’s progress, or lack thereof, you are the one who has more than likely wept over the fact that they don’t fit in or just can’t get to grips with things that other children have no trouble with at all.

Start at the beginning, from the day they were born. Note down any problems with the birth, unusual development, recurrent medical or social problems, how they get on with others and with school work. You will be amazed how much you can write and you’ll probably shed a few more tears as you do it as well.

If you then want to fill in the form, you’ll be able then to pull things out of your narrative to put in the spaces. Or just leave the form out altogether and redraft your narrative making sure you’ve covered all the questions on the form as well as everything else you want to say. This is your chance to put your child’s case. If you’re turned down for assessment you will be able to appeal, but the more relevant information you put in now, the less likely it is that you’ll have to.

Refer to reports your child has had done and send copies of them along as well with your application. Go through the reports you have and pull out the parts that strengthen your case.

For example. “In his assessment on 21/4/06, Dr X remarked that Johnny has great potential but his lack of social skills was likely to adversely affect his learning. Please see report (numbered 7) enclosed with application.”

Then number that report number 7 or whatever number you’ve given it, and enclose it with your application. You could then back this up with remarks teachers have made to you or with comments from Johnny’s year end report, which you will also number and enclose.

If their writing is a problem, send in samples of it. If reading is a problem, write down the level they’re reading at or perhaps that they avoid reading because they find it frustrating. If they are desperately unhappy because they are bullied because of their differences, mention this as well. If their frustration makes them angry and violent or unpredictable or friendless, write this down too.

But my best advice when approaching your application is to tell your child’s story first and foremost. You don’t need to be a world class writer, but do use the spell checker on your computer or get someone else to read it over for you if you’re unsure. Enlist the help of a group such as Parent Partnership if you’re lacking support.

No one knows your child like you do. Others, such as teachers, will have a different and valuable perspective, so speak to them and include what they say in your application. The SENCo will be asked in any event by the LEA to fill in their side of things but speaking to them yourself will inform you of things you may not have known.

Update: I’ve just added a help template under “SEN Assessment Form Part 2