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.

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?

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

Debs writes...

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

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

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

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

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

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

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

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

 

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

SEN stories in the news this week

It’s been a busy week of posts on Special Needs Jungle. I’ve listed a round up below along with some other SEN stories of interest in the news. Next week, I’ll be answering questions about SEN on TheSchoolRun.com – why don’t you join us?

I subscribe to many RSS feeds bringing news stories about SEN, disability and general education. If I should subscribe to your RSS from your site or blog, leave your weblink in the comments.

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

Happy New Year! At this time of the year, we’re often thinking about how we can change our lives, and those of our children, for the better. I’m delighted to have a New Year guest post from Lesley McCall, an NLP practitioner and Hypnotherapist. She is experienced in helping people with parenting issues and with children who have special needs.

_______________________                       

Lesley McCall

Nobody ever warns you do they?  When you have a baby it’s all excitement and blue sky with no hint of a cloud. Nobody ever warns you of the pain you will feel when your child is struggling – it’s like having your own little voodoo doll – they get hurt and you feel the pain. Suffering by proxy.

However if we can learn to be resilient parents it will help our children be resilient too and many studies have shown that resilient children make happier adults.

So what makes us resilient? The short answer is learning to cope with adversity. The gardeners amongst us know that if you raise seedlings on a warm windowsill with no draughts then they grow ‘leggy’ and weak. These seedlings will wilt as soon as they face the cold winds of outside and will struggle to survive. Far better to allow them some cool breezes now and then while they are growing to prepare and strengthen them for the outside world. In the same way our children would never have learned to walk if we had never let go of their hand.

So how do we become resilient parents? How do we maintain our perspective when our children are unhappy?

Think of it like this – if you are drowning then you can’t save anyone else—all that happens is that you both drown faster if you try. But get yourself into a boat and you can pull them in too.

Some Techniques that may help:

1. Positive Future Pacing

Anxiety is all about the future – anxious people imagine all sorts of disasters approaching. If all you can see is oncoming disaster, no wonder they are scared. When your child has challenges it’s easy to fall into the trap of seeing the worst – but that’s no use to either them or you.

The truth is that you really don’t know what lies ahead. No matter what you have been told by medical professionals, health workers, well-meaning friends – they don’t know for SURE how it will turn out – nobody does. If someone tells you that in all probability such and such will happen say ‘How do you KNOW ?’ Always believe in the best possible outcome – you never know, it might happen.

2. Challenge negative thoughts – yours and your child’s.

The most influential person you listen to is you– so be careful what you say to yourself. Challenge negative thoughts – are they really true? How likely are they to happen?

3. Learn to be selfish from time to time- without guilt

Your child needs you to be strong – if you are stressed to the point of illness how is that going to help them? So take care of yourself so you can take care of them – eat well, learn to relax, take time out for you when you can. This all makes you stronger – better able to support everyone else.

4. Think Straight- perspective!

Don’t make problems worse than they are – and don’t invent them. If it hasn’t happened then don’t think about it – it may never happen.

5. Reframe the negative to the positive

‘My child can’t do ….but they can do

‘This is never going to happen…..but something better might’

‘I can’t see a solution to this ……yet’

6. Remember – you and your child see things differently.

What hurts you might not bother them. Your child is not you. For example: if you are an extrovert then you might hate being on your own but if your child is an introvert then they may need to be alone to ‘recharge’ their batteries. They may not see being alone as a problem. Do not impose your ‘model of the world’ on them – they have different ideas, beliefs and views to you. If they say they are okay – believe them.

Finally always remember that there is no such thing as a perfect parent. If you offer your child unconditional love, support and approval then you – and they – are doing well.

If you would like my free relaxation techniques please contact me on

Lesley@thirdattic.com or contact me via my website, www.lesleymccall.co.uk

Special Educational Needs stories of the week

This will be the last one of the year as i take a break and concentrate on my boys for Christmas. Have a great Christmas. If you do something different to accommodate the needs of your child, would love to hear about how you manage with the festive season.

Don’t forget my Christmas Giveaway – you just have to go to www.facebook.com/specialneedsjungle and ‘like’ it and you’ll be entered in the draw for a copy of my SEN book, Getting started with Statements – even if you don’t need it yourself, you may know someone who does.  If you already like the page, just leave a comment asking to be entered.

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!

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

Ritalin, talking therapies and what I think our kids really need…

The Health Minister, Simon Burns has said that the chief medical officer and the NHS medical director are planning to write to clinicians to remind them of the full range of NICE guidelines on conditions—including ADHD—that affect children’s mental health. It came in response to an adjournment debate on 25th October 2011 called by MP Pat McFadden on the rise in prescriptions for children of the drug methylphenidate (Ritalin, Equasym etc) used to treat people affected by the symptoms of attention deficit and hyperactivity. These symptoms affect behaviour and the ability to learn and as well as being found in ADHD, are also co-morbid in young people with autism, Asperger Syndrome and other similar development disorders.

Mr McFadden made a plea for the Minister to carry out a proper, comprehensive review of the use of these drugs involving professionals from the medical, psychology and teaching fields, as well as the families of those who have been prescribed the drugs. He asked the Minister, “Will he commit his Department to carry out a proper research project into the use of the drugs, including the age of the children receiving them? Secondly, in the light of the huge growth in prescriptions, will the Government carry out a proper review of practice in the field, as called for by the Association of Educational Psychologists, before the new guidance comes into effect in 2013?”

Mr Burns said he himself had a family member who was successfully being treated with Ritalin. “Across hospital and primary care, the prescribing of drugs for ADHD increased by around 12.5% between 2007 and 2010, the latest four years for which data are available, and by around 6% in 2010 alone. Prescribing in primary care alone increased by 22% in that four-year period, reflecting a significant shift in prescribing activity from a hospital setting and into primary care. Looking back further, one sees that prescribing in primary care has tripled in the past 10 years.”

However he pointed out that the cost of doing nothing was too great for those affected and that, if left untreated, mental health problems can lead to low attainment in school, antisocial behaviour, drink and drug misuse, worklessness and even criminality in adult life. He said, “Getting things right for children and their families—through a broad range of support to promote good mental health from the start of life, through the school years and into adulthood—can make a real difference to young lives.”

Yesterday, the government announced a further £32 million pounds for child mental health services, including talking therapies. While this may seem like a lot, when split across the country, it might not go as far as hoped. Talking therapies take time and require therapists qualified in techniques such as cognitive behavioural therapy, particularly in its use with children. I believe that this issue should not be looked at in isolation. It is an educational, parenting and medical issue all at the same time.

In educational terms, it should be looked at whether the right learning environments are available to teach children for whom sitting still in a classroom is impossible. There is plenty of practical advice available giving tips and strategies to help manage students with ADHD and help them thrive in a regular school environment. What is needed is the will to implement them consistently at a classroom level. That takes teacher training. And when I say consistent – that is key. One of my sons one year in mainstream had a teacher who managed him well. The next year he moved into a class with an older teacher who didn’t even realise he had a diagnosis, let alone the will to adapt her teaching style to help him. It’s no use having teaching assistants who are just mums looking for a part-time job. If they are to work with learning disabled children or those with attention or hyperactivity issues that may be clouding their true ability, the TAs need to be well trained. Some are and sadly, some aren’t. That’s not good enough. Our ASD sons were both treated for a while with medication. But they no longer need it because they are now in the right educational setting. This is not only my view, it was  the opinion of their paediatrician, an experienced and well-respected man.

Parenting wise, parents who have children with difficulties need support. They need to learn techniques to manage their children effectively and I’m not talking only talking about parents from lower down on the social scale. Just because you have a good job or a good education does not mean you come automatically equipped with the parenting skills needed to cope with life in a household where there is constant stress and discord because of the behaviour of one of your children. I know, I’ve been there and I know plenty of other middle-class good parents in the same boat.

Medically, and here we come back to Mr McFadden’s debate in parliament, we need GPs who don’t fob parents off, and we need specialists who listen to parents and who have the knowledge of and access to, up to date research and therapies pertaining to children’s mental health. They need to be able to work with parents, schools and CAMHS together to be able to put the right package of treatment together for the child concerned. Yes, it takes time and money – well they’ve just given £32 million, so there’s cash to be spent. But when you are talking about a child’s future you cannot take a piecemeal approach. Questions such as why is the child having the behavioual isssue – is there an underlying medical condition? Are they dyslexic? Do they have a speech and language problem that has gone unrecognised? A holistic approach is needed. Many of children like these turn out to be gifted in one area or another and need to be given the chance to let their talents find a way to the surface. If nothing else, in the 21st century and with all the research already available it should be within our power to help some of our most vulnerable people to thrive.

Lastly – and this is key. the media should stop being so damn judgemental of parents and children with behavioural problems and yes, Daily Mail, I’m talking to you and your readers who are so quick to condemn and who publish ill-informed opinions and blatant untruths about this already embattled section of society. I believe the reason the Health Minister, Mr Burns, gave such a thoughtful and informed response was because he himself has personal knowledge of the issues. Which just proves the adage about walking in other people’s shoes.

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.

My review of new SEN book, Towards a Postive Future

Book cover of Towards a Positive FutureThis easy-to-read book by Janet O’Keefe gives a valuable overview into the world of SEN support and the difficulties faced by parents in trying to access it.

It sets out in simple terms the current system for readers and gives some good advice about how to seek the right experts for your child. It also offers pointers for those experts themselves.

The book explains the most common social and communication disorders and helpfully illustrates them with personal stories garnered from her broad experience as a Speech and Language Therapist who has given evidence at SEN Tribunals many times. The stories will have a resonance with many parents and remind the reader that special needs should always put the child at the centre of the process.

Perhaps the most interesting part of this book is the section towards the end where Mrs O’Keefe challenges parents and educators not to blame others for society’s failures but to take action themselves to make the landscape better for our most vulnerable children. A very interesting and extremely useful read recommended for both parents and professionals.

You can find the book on Amazon or at the Publisher site.

Janet’s Wordswell site is here

The conference site is here

Busy weekend for SEN Events.

Yesterday, I got a mention in The Guardian’s Education Cribsheet regarding my new book – what a lovely surprise. It’s also to be featured in our local paper, The Farnham Herald.

There are a busy few days coming up in the SEN calender. This weekend is the TES Special Educational Needs show at the Business Design Centre in London – a weekend of seminars and a floor full of companies and charities concerned with special needs exhibiting their products and services. I’m looking forward to going on the Saturday and seeing what’s there and will report back here on the most impressive things I have seen.

If any exhibitors would like me to make a special stop at their stand, please email me at info@specialneedsjungle.co.uk with your stand details. I am happy to review products and services on this site that I believe will be beneficial to the learning and support of children with SEN.

The day before, on Friday 14th, SEN parents and professionals will gather in Newbury, Berkshire, for a conference entitled ”Towards a Positive Future‘. Organised by practitioners Wordswell and social entrepreneur Robert Ashton, the conference is aimed at giving encouragement, information and people concerned to manage change and will help you do more for the SEN children you care about.

The conference will also mark the launch of an exciting new book, ‘Towards a Postive Future’. With a foreword by Dr Hilary Gardner, Department of Human Communication Sciences at The University of Sheffield, the book celebrates what we know works for our children to achieve educationally and in life. I have had the privilege of being able to read an advance copy and I will publish a review on this blog later this week.

The conference has a very interesting line up of speakers and I believe there may be a few space left, if you’re thinking of attending. I’m looking forward to learning some new things and networking as well as meeting Janet O’Keefe, the author of the book, in person.

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.

Sports Day at More House School

We’ve just come home from Sports Day. This always used to be a day of tears, upset and general not wanting to go to school. That is, until they started at More House.

Although our eldest has always been a capable sportsman, last year we were all amazed when our youngest son won his race, largely down to the thoughtful way the PE staff had grouped the boys so that each boy had a real chance of winning. He had never won a race before, was not well coordinated, pretty dyspraxic and hated anything to do with sports, but this win, encouraged by the wonderful members of staff had spurred him on.

This year when Sports Day dawned, he was excited, a bit nervous and most of all, ready to win.

It’s amazing how the right encouragement and instilling self-belief can give a child a complete turnaround. Actually, it’s not amazing at all, it’s common sense, but it had never happened before for my son. When his PE teacher told him last year that he was really impressed with him in hockey, he held on to it all year as validation that someone (other than us, of course) believed that he could do well in sports.

During the year he has gradually gained confidence and competitive spirit. He has moved up the ability groups from bottom to top in a couple of terms and now believes that he is fast and able to win if he puts his mind to it. Now he wants to take part in sports and he wants to be picked for teams whereas before, he would do anything to avoid it.

Here is a short video of him and of his brother Luca, both winning their races. The mad woman shouting is me (who never won anything at sports and so am doubly proud)!

To cap it all, Giorgio won Most Improved Athlete of Year 5, something that I do not think he will ever forget. Tonight he is truly a happy child (for once!)

I wanted to write this post to thank the PE gods that are Messers Williams, Roddis, Faasen & of course Mr Williamson..(who could forget him?) for their dedication and enthusiasm to our boys. I’m not sure you realise how much we parents of  boys with challenges appreciate your efforts. Sports Day was inspirational and so are you.

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!

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

ASD child? Are you getting what you’re entitled to?

If you are the parent of a child with an Autistic Spectrum Disorder, you don’t need me to tell you how difficult a ‘normal’ lifestyle can be.

Not only will your child have some level of social and communication difficulties, they may well also need speech and language therapy or regular occupational therapy that unless you pay for privately, you face a long NHS wait (in the UK) or it may not be available at all. Going for days out maybe out of the question because of long queues or simply the stress of facing the world and other people maybe too much.

You may even need to get hold of specialist equipment such as writing slopes, special types of pen or even a laptop that would make your child’s life so much easier but it all costs money.

If your child has a disability that affects their life so that they need more help than an average child of their age, you may be able to claim Disability Living Allowance. It is made up of two components, The Care component and the Mobility component. You can call the DWP for a form, or you can now apply for it online. It’s a tricky form to fill out, because it’s not really set out for children with ASD, but there is advice on the NAS website on how to go about it.

If you are refused, you can call up and ask for a reconsideration of the case if you think what you have said has been misinterpreted, or, failing that, you can appeal. We get the middle rate of care and the lower mobility rate for both our Asperger’s sons, and it’s worth more than £250 a month each. This helps towards the costs of specialist education, which includes OT and SLT that we would otherwise find difficult to afford.

Legoland, thanks to their disability scheme

Legoland, thanks to their disability scheme

If your child has a Statement of Special Educational Needs they may be able to get a laptop or other IT equipment from the LEA. Ask your school to arrange an IT assessment. My younger son has an LEA laptop that he makes really good use of.

If your child qualifies for DLA and you are their main carer, and you don’t earn over £90 a week, you can claim Carer’s Allowance, which is worth around £53 a week. Not a lot, but if their condition prevents you from earning money through working, (eg, you can’t leave them with childminders after school or in holidays because of their condition)  then you also can’t claim job-seeker’s allowance, so every little helps.

If your child gets DLA, you are also eligible for a cinema card. This means that one person/carer accompanying your child to the cinema can get in free. It costs £5.50 and is valid for a year. You get a photocard with the child’s details so it doesn’t have to be the same person taking them each time.

Many children with ASD love going to theme parks, but cannot stand to queue which means that they rarely get to go. However, many theme parks have special passes or stamps which mean you can use the exit as an entrance, thus avoiding the queue altogether. We did this and got around Legoland’s rides so quickly, we were able to leave by 2pm having been on everything and with barely any stress. Other attractions also have reduced rates for the disabled or free entry for carers. Check their websites or call them up before you go.

The above are in addition to the usual child and work related tax credits which are availabe to anyone who qualifies. More information on what you may be able to claim can be found at the Disability Alliance website



Autism Costs UK economy £28 billion

A new study into the economic impact of autism spectrum disorders in the UK has shown that the total estimated cost is £28 billion each year. That averages out at £500 each year for every man, woman and child in the country.

The study, published in this month’s edition of the journal, Autism, includes estimates of the impact on the economy through lost productivity and says that further improvement in earlier intervention should considered and services across government and society in general should be better coordinated.

It combined data on prevalence, level of intellectual disability and place of residence with average annual costs of services and support, together with the opportunity costs of lost productivity. The costs of supporting children with ASDs were estimated to be £2.7 billion each year. For adults, these costs amount to £25 billion each year. The lifetime cost, after discounting, for someone with ASD and intellectual disability is estimated at approximately £1.23 million, and for someone with ASD without intellectual disability is approximately £0.80 million.

The research was carried out at King’s College London, Institute of Psychiatry, and the London School of Economics. Its authors found that, “At a time when the UK government is emphasising the need for higher rates of economic activity, and in particular is
trying to help people with disabilities and long-term conditions move into paid employment, the high costs of lost productivity stand out. Very few people with autism were in employment, which is hardly surprising given that there was little or no support to get them into work.”

The study points out that the figures only show what was spent or lost and not what ought to be spent. Autism advocates feel this figure should be much more, particularly in the area of early intervention and appropriate education. Such help can ameliorate the effects of the disability for many people with ASD, particularly those at the higher functioning end of the spectrum with Asperger’s Syndrome.

While the authors of this study emphasise that the costs presented do not provide an economic case for early intervention, they do highlight the importance of addressing that question. If early intervention could successfully change some aspects of behaviour that are cost-raising, both in childhood and subsequently, it may allow cost savings to be made and quality of life improvements to be achieved.

The research found that the range of sectors on which autism has an impact shows that there is  a need to ensure coordinated action across different parts of government and society more generally. It also said there was a need for a much better understanding of the cost and cost-effectiveness of various interventions and supports for children and adults to ensure that decision makers have a stronger evidence base when deciding how to allocate resources.

Study: Economic Cost of Autism: Martin Knapp, Renée Romeo and Jennifer Beecham, pub,  Autism http://aut.sagepub.com/cgi/content/abstract/13/3/317

SNM Holiday 3: Incident on the beach

So, we were well into the holiday, we’d done Goonhilly Earth Station where Asperger’s Son2 had had a tantrum because he wasn’t heavy enough to go on the Segway Tour and then Asperger’s Son1 had a tantrum because we said if one couldn’t go then no one would (to avoid unbearable crowing afterwards). We’d done the Eden Project where despite all the amazing things to see in the biomes, the restaurant and the shop were still the most popular attractions.

So it was Thursday, it must be Tintagel. I was particularly looking forward to going up to the castle as the last time we were there we’d gone the wrong way and had to climb down a steep grassy embankment to get to the castle by which time my legs were too wobbly to go up it. This time, we knew better. The five of us, including Grandma, went down the equally steep hill to the castle but at the pay station, Son1 decided he wasn’t going up the rocky outcrop path to the castle in case he fell off and tumbled down the cliff into the sea. Now, this is a  perfectly safe English Heritage property, not for the faint-hearted, granted, as it is a bit of a climb, but safe nontheless. But he was adamant. He was not going and he was more than a little worried about his Dad going as well in case he came careening off the edgeinto oblivion and then he’d just be left with me, No-Fun Mum.

His fears were both irrational and not, as he is rather accident prone and if anyone could fall down a perfectly safe path and crash on to rocks at the bottom, it would be him. But once he had firmly refused to go up, Son2 decided he wasn’t going up either, so my husband and mother-in-law went up by themselves, leaving me to sit at the cafe and watch their progress, while the boys drank hot chocolate. One day I will get up there. One day, before I am too old to manage it.

After lunch, and further fortified by Granny Wobbly’s Handmade Crumbly Fudge (not to be missed at Tintagel), we set off in search of a beach further down the coast. The tide was on its way out and there were surfers braving the early April weather to catch a wave or two. The boys made do with rock-pool hopping and exploring and were having a great time, which meant we were too.

What happened next?

What happened next?

Son1 then starts jumping from side to side of a stream leading to the sea, bordered by boulders, some covered in slimy seaweed. Please stop that, I asked. Please stop that Grandma asked. No, we were told, it’s fun. You can guess what happened next, can’t you?

Hey, who left that slippery seaweed under Son1’s feet? A mighty splash and he lands, fully clothed, in the water. In April. Of course, it wasn’t his fault. Of course not. It was the seaweed. It was the rock. It was our fault for not buying him some shorts at the surf shop that he had wanted.

So, he got his shorts and a T-shirt as well. The nice lady, a mother of six herself, had seen it all before and put his wet things in a carrier. Son1 is now the proud owner of a  very cool Trebarwith Strand Surf Shop T-shirt and is none the worse for wear and I am just glad the lodge we stayed in had a washer/dryer.

I just imagine how boring our lives would be without our own home-grown Comedy Central players. Most people look at us parents of Special Needs children and think how sad we must be. But it’s laugh or cry. I know which I would rather do. And just think of the stories we’ll have to tell their children.

HolidayPost Number Two 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.

Diary of a Special Needs Mum Pt2

Despite the hassle of the average pre-school morning, I always look forward to picking up my children after a hard day at school. That is, until I actually pick them up.

Waiting for them to emerge after prep, Son1 appears, flings his backpack at me and tries to get his skateboard, which is muddy, into the back seat of the car.  He flings himself after the skateboard, ignoring my protests.

“Where’s my snack?” he says, by way of a hello. That is all he says, plugging himself into his MP3 player. I resume the wait, for Son2. And wait. And wait.

“Did your brother do prep?” I enquire of Son1.

“Wot?” responds my eldest, removing an earphone. “No. He did swimming.”

Oh. My. God. The swimming pool is outdoors. Son2 has Reynaud’s, which was why, that very morning he’d decided to go to school on a mild day with wooly hat, gloves and scarf on. No coat though. In fact he was in the car before he realised he wanted these items and when I said we would be late if he went back, he’d screamed ‘I’ve got Reynaud’s you b***ch!’ at me. He is nine. Needless to say I took him back into the house, late or not, for a good talking to whereupon he found the things he wanted anyway.

So swimming on an Autumn afternoon, in the outdoor pool. Could be quite pleasant, you might think. Well, it might be, unless you’re the poor sap stood waiting for him to have a very long, hot shower afterwards, to warm up, before he finds his kit, puts it in his PE bag, finds his backpack and shleps all the way up to the car park.

“Shall I go and tell him to hurry up?” asks Son1, amazingly helpful.

“No, I’ll lose you both.” I answer. Nonetheless, Son1 is off on a mission, bolting from the car and disappearing into the school estate. By this time, everyone else has come out and left, some with parents, some in taxis. There is a delicious dinner smell coming from the Refectory where the boarders are about to sit down to their evening meal.

More time passes. Twenty minutes, in fact. Son2 eventually arrives, with luggage, which he drops at my feet. “Where’s my snack?” he asks, obviously a familiar greeting in our family.

No Son1. Son2 offers to go and look for him.

“NO!” I shout, feeling like we’re in an episode of the Chuckle Brothers. Son1 appears several minutes later saying he can’t find his brother, who is now sitting in the car, plugged into his own ipod.

It’s ten to six. Finally we set off for home, where I have earlier prepared Bolognese for dinner.

Forty-five minutes later, I have persuaded everyone to come to the table, except husband, who is still putting in long hours to pay for school fees for the son not yet statemented (That’s another story).

Half-way through dinner Son2 shouts, “This has meat in it. I told you I was a vegetarian! You’re so stupid!” Clearly he didn’t notice during the first five mouthfuls that Bolognese usually consists of meat.

“But yesterday, I made Cauliflower Cheese and you said you didn’t like that either!” I reply, “If you’re going to be vegetarian, you have to at least eat vegetables.”

“I don’t like Cauliflower. Why do you always spoil everything I try to do? You’re mean. I hate you!” he says and carries on eating anyway.

Later, Son2 must do his homework as he didn’t do prep at school. This is a nightmare, as anyone with children like ours will attest. We get, ‘You write it for me?’, ‘It’s too hard’, ‘I can’t write’ and the inevitable ‘Who invented homework anyway?’

My husband is home now and he is rapidly losing the will to live as he tries to help, telling his youngest that if he can’t do homework at home, then he must do prep, not swimming. Son2 throws himself on the floor before we come to a compromise that if he writes it, we will dictate it. This he can just about manage, though we have to spell every word and if we go too fast, he shrieks at one of us.

I leave father and son to it and go to supervise Son1’s bedtime ablutions. We have bought him a High School Musical toothbrush that plays two minutes of music so he know how long to clean his teeth for. It’s a fantastic idea and my son’s teeth are still recovering from the shock of being cleaned properly for the first time since he started doing it himself.

“Mummy, can I do free-running, you know where you jump across buildings?” he asks.

I look at my son in wonder, “Darling, you just told me that you hurt yourself falling off a bench you were sitting on. Your whole life is like free-running.”

And his isn’t the only one. My husband and I often feel like we’re hurtling at great speed from one precarious place to another trying to negotiate the obstacles of our sons’ special needs that make them exasperating, though never less than lovable. I keep telling myself that one about God not giving you more than you can bear, but sometimes I seriously wonder if he got me mixed up with someone else.

However, when they’re in bed, finally asleep, they look just like beautiful angels and you know that, despite everything, you wouldn’t swap them for the world. And then I go and have a large glass of wine.

<Diary part 1

Really good site

If you’re trying to get a statement for your child take a look at this website. Douglas Silas runs a firm of solicitors specialising in SEN tribunals. I didn’t use his services myself, but I did use his large selection of free factsheets and sign up to his emails which proved very useful. I’ve added a link also in the ‘useful links’ section and it’s well worth taking the time to visit his site.