Contact A Family extends free benefits helpline service

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

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

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

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

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

These include:

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

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

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

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

You can also:

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

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

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

Joanna Grace

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

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

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

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

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Should sensory stories be available to families?

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

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

Helping to tell sensory stories

Helping to tell sensory stories

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

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

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

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

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

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

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

All About Sensory Stories

What are sensory stories?

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

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

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

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

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

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

SEN protection to age 25 – unless you go to university

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Edward Timpson, Minister for Children and Families, said:

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

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

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

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

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

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

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

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

Parents on the Warpath…and other stories

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

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

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

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

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

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

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

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

On to some great stories from the week:

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.

Financial affairs advice for your special needs child for when you’re gone

It’s a difficult subject to think about, let alone tackle, but for many parents of children with severe and complex learning disabilities, who are unlikely to be able to like independently, it is a vital issue – how to make sure your child’s financial affairs are managed when you are no longer here.

The charity Mencap has a solution to help those families concerned with this type of forward decision-making. They have a wills and trust team that can provide  parents, families and carers with free booklets about writing wills and setting up trusts for the benefit of a loved one with a learning disability.

If it is likely you will be leaving them a substantial sum of money – or even a smaller amount, you will want to ensure that you are not leaving them in a vulnerable position. You may also be keen to ensure that they continue to receive their benefits but still enjoy their full inheritance.

The Wills and Trusts team also organises free seminars around England, Wales and Northern Ireland. The free two-hour seminars offer vital, specialist legal advice and give families and carers a much needed opportunity to get answers to those difficult questions that often make the process seem so daunting.

The next Planning for the Future events in your area are:

  • North East – February/March
  • East Midlands – March
  • Wales – April
  • Northern Ireland – May
  • East – May
  • London – June
  • South East – July
  • South Central – September
  • South West – October
  • West Midlands – November
  • North West – November

For specific dates and locations of seminars taking place in your area, visit http://www.mencap.org.uk/pffe

Mencap says  places at these seminars are always very popular so please book your place as early as possible to avoid disappointment. To book your place at any of the events please use our online booking form: https://www.mencap.org.uk/webform/book-place-planning-future-event 

Alternatively, please contact Gina Collins on 020 7696 6925 or email willsandtrusts@mencap.org.uk 

If you cannot make the event but would like information about providing for someone with a learning disability in your will call the team on: Tel:  020 7696 6925

Visit: www.mencap.org.uk/willsandtrusts 

Email: willsandtrusts@mencap.org.uk

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Getting troubled kids riding high with the brilliant Wave Project

While I was doing some research for DysNet, I came across a fantastic project that uses the beautiful Cornish coast to help young people in difficulty. The Wave Project is such a brilliant idea and is a volunteer-led organisation that uses surfing and the sea to improve the emotional health of young people.

Surfing with The wave ProjectIt is a non-profit making community interest company that works with pro surfers and volunteers to inspire and motivate young people who, for different reasons, are experiencing difficulties in their lives.

The charity’s clients include children and young people with mental health difficulties, emotional problems or learning disabilities – as well as those who are simply under lots of stress due to extraordinary circumstances. Its unique 1:1 surfing courses are delivered with support from a fantastic team of dedicated volunteers, who provide motivation, support and encouragement.

The Wave Project is evidence-based, and works with mental health professionals and psychologists to refer clients, and independently evaluate its projects to ensure that they provide lasting and meaningful benefits for its clients.

The surfing projects are all about creating a positive vibe. They are designed to bring clients out of their comfort zone and get them focused. But they also provide an opportunity to give them a fun experience, meet new people and get lots of encouragement.

The Wave Project believes that mental health should not come with a price tag. That’s why all of its projects are free of charge to clients. The charity raises the funds needed to deliver the courses for the young people and use professional services to take referrals. Its funding comes through direct fundraising, grants, trust funding and personal donations. Its backers include the NHS, BBC Children In Need and Cornwall Council.

The charity also depends heavily on its dedicated volunteers who give up their time to support its work with vulnerable young people.

‘They are all amazing beyond words,’ said Project Co-ordinator Joe Taylor. ‘Without them, we simply couldn’t deliver our activities to the standards we have set.’

The charity also recently launched The Wave Project Surf Club. Some of the children who had previously taken part in one of the courses enjoyed surfing so much that they were inspired to set up the club to provide them with ongoing access to the sport.

Joe, who founded the charity, said: ‘This club is the first to be run by and for children who have suffered from difficulties in their lives, and I am lost in admiration for the young people who have taken part.

‘Their ability to confront the difficulties facing their lives and respond in a positive way by launching their own surf club is a statement of how much young people can do.’

The Wave Project only takes referrals from people working in professional services or charities, such as psychiatrists, psychotherapists, counsellors, youth workers, charity organisers and SENCOs; that is how they know that the young people they work with have a genuine need. The charity is always keen to talk to professionals who work with vulnerable children and young people, so please contact Joe for a chat if you would like to refer a client. Alternatively, do so direct through the website using the simple referral form, and someone will call you back. All information about clients is of course managed in the strictest confidence, in accordance with the Data Protection Act 1998.

Volunteers also being sought to take part in the projects. For more information about these opportunities, please email info@waveproject.co.uk. For further information, please contact Joe Taylor on 07584 124873. More information about the Wave Project can be found at www.waveproject.co.uk.

 

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

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

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

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

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

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

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

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

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

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

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

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

Home educating a child with special needs

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

If ‘child centred’ help is a no-brainer, why isn’t it happening?

One thing that’s become very familiar in the last few years, both personally and from reading your comments and emails, is how outragously hard it is to get the right medical and psychological support for ASD children and their families.

Our family has been waiting for a CAMHS appointment since the beginning of the year. I’ve called up the consultant’s secretary on numerous occasions and still nothing happens, despite being promised an appointment at the beginning of April. It’s frustrating, stressful and my son meanwhile, is not getting the help he needs.

Not that going to CAMHS is a particular help in many cases. When Son1 went, we were told that CBT wouldn’t work because he had Asperger’s and as he was now in the right school, goodbye to you!

And professional support for parents? Don’t get me started. My GP told me candidly that there wasn’t help for anyone and that’s just the way it is.

One lady who wrote to me recently said, “The two consultants in our CAMHS team told me that my son doesn’t tick enough boxes to fit easily into a diagnosis but they did acknowledge that he’s a complex boy with significant processing deficiencies (whatever that means). I stamped my foot a bit and said that they jolly well need to try to fit him into a box so that we can get some help and support for him and they agreed to carry out some diagnostic tests. Unfortunately, all did not go to plan as when we arrived at the department for the cognitive tests, the consultant had collapsed and was being taken away in an ambulance. The other consultant told us that his colleague had been made redundant and that we wouldn’t have another chance of an appointment with her. This was in January and then I never heard from them again.”

She went on to say that her GP wanted to refer her son elsewhere, but CAMHS refused to support the referral as they want to see the diagnosis through themselves and are expecting a locum to come in the near future. “It seems that at every step of the way we are faced with obstacles. I can’t believe what they are prepared to let these children go through before they get a diagnosis. I am determined to get things sorted for my son but feel so sorry for the other children out there who have parents who are less able to challenge the professionals. I hope that one day things will be different.”

Another mother told me that her 11 year old daughter, who suffers from chronic pain and ASD, was refused an assessment by the LEA. After a period of homeschooling, her daughter went back into school as although her anxiety and self-esteem had improved, the mum was concerned about her daughter becoming isolated.

She said, “During this time, I applied for a statement but the LA refused to assess her, saying the the school were meeting her needs. I didn’t appeal because I was so wrapped up with dealing with her pain and needs myself.

“She spent about two weeks in school, before it became quite apparent that her new levels of self esteem had dropped through the floor. She bacame anxious and her pain got worse. So she was signed off sick by the doctor. I was told that if a child was signed off for over a certain period they would get some help, but none arrived. So during November and December she remained at home, waiting patiently for her medical appointment in January, which we have waited for since July. The school sent her a few SATs papers.

“After an understandable meltdown in the hospital and the trauma of the whole experience of day surgery, she returned to school a couple of weeks later and lasted three and a half days. She was signed off again with anxiety and pain but without any firm diagnosis that would satisfy the LA that we had new information to reapply for a statement.”

After seeing a different specialist, she has now been given the diagnosis she needs but is still out of school. The diagnosis means that she can now, however, access out of school education. The LEA has now agreed to assess but only after putting this family through an incredibly stressful year of relentless rounds of school and medical appointments as they tried to convince someone to help their daughter. The young lady was, during all this time, in a lot of pain.

Still, it’s not over yet the mum says, “I just hope we do get a statement so fingers crossed, and in the meantime I’ll learn all about tribunals just in case we don’t!”

Will the new Green Paper make things easier? Will it really put the child at the centre and bring together health, education and care? We’re still waiting for the government’s document, “The Way Forward” to be published, despite it being ‘imminent’ since February.

The only way a reformed system can work is if all the services do work together for the good of the child and on top of that, if the family or carers supporting the child are in turn, supported themselves. It seems like such a no-brainer, so why does it just never seem to happen?

Advocates For Children – a FREE SEN legal advocacy charity.

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

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

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

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

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

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

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

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

http://advocatesforchildren.org.uk/

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

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

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

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

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

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

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

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

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

For online booking, click here

Why I turned my back on my TV news career

Recently I appeared in Woman magazine – a small section in a feature entitled, “Meet the regret-me-nots”

My piece was headlined, “I regretted becoming a full-time mum”, which isn’t strictly accurate – rather I found myself, like many mums who give up professional life for stay-at-home motherhood, feeling a certain wistfulness for opportunities forgone. I also experienced the loss of self-esteem that many women feel when they no longer have a full-time, possibly high-flying career. In fact, when I stopped being a television news presenter, even my own mother (herself a career woman) stopped boasting about me. After all, I was just a mum now, wasn’t I?

Well, I happen to think that parenting is the most important job that anyone can do – because done badly you can ruin the life and chances of another human being. And if I’d been at work, I may not have had the time or energy to work out why my children were different. The subtleties of Asperger’s can easily be missed or misinterpreted and that can lead to the child not getting the help they need to fulfill their potential.

You can, of course, be a great parent and work full-time and I would never suggest anything else – other peoples’ lives are simply none of my business. But for me, once I’d held my son, my decision was made. I think my colleagues were a little shocked that this ambitious, somewhat fierce, journalist could just walk away from what I loved doing so easily.

We had to move to a cheaper part of the country to afford it at the time, but my own chaotic childhood had left a deep yearning for a stable, traditional family structure and I’m lucky that, despite the special needs issues, we still have that. I’ve also replaced my career in the often soulless world of television news with something better – my family, my writing, the special needs work and my new job helping people affected by congenital limb differences. I’m a better person because of it. Maybe now my (sadly, late) mum would even boast about me again if she could!

Anyway, now a new issue of Woman is out, I figure they won’t mind if I post my own little piece here. You can find the Woman Magazine website here. Thanks to reporter, Nikki Osman, who wrote the piece. Click the image or the link below to read it for yourself.

My husband and I are off on a spa break tomorrow, courtesy of GP carers breaks in Surrey  If you’re a carer in Surrey, you could be eligible too. If you know someone this applies to, please pass the link on to them.

Look out for the regular story round up tomorrow!

Woman Magazine 9April-Tania Tirraoro.

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

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

Image courtesy of Cambian

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

Empowering parents is the goal for Pat

I’m delighted today to introduce a guest blog post from Pat Bolton, who works with a small  team of Participation Practitioners at Parents In Power, Gateshead,  www.parentsinpower.btck.co.uk  Pat works at the coalface of special educational needs and helps parents every day to get the support their children need.

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Parents In Power is a Parent/Carer Forum. Every Authority has a parent/carer forum and to find out more information or where your own parent/carer forum is located in your area go to www.nnpcf.org.uk . We are independent and  work with some of the most amazing parents of children with disabilities, their strength and fortitude is second to none, no matter what is thrown at them week after week.

I have a son who is now a young man, 19 years old with ADHD, Dyspraxia and Autistic Traits and he is the most awesome of people. His brother who is 17, puts up a lot with his brother and is one cool dude, but one thing is for sure they love each other to bits and boy do they look out for each other.

So I have walked that walk, that long and frustrating journey and I have to say, sorry folks, but it doesn’t end at  16. But I was lucky enough to get my son in an Independent Special School and paid for by the Local Authority.

Every parent/carer that I come across without a shadow of a doubt tells me they are sick of fighting for what they feel their child simply needs and is entitled to in order to lead a normal a life as possible and for their child to reach their potential in whatever that means.

Their problems are nearly always linked with their child’s school and the frustration and energy it takes in trying to get this part of their child’s life right, I mean let’s face it, what a massive part of their lives it is.

Meetings are daunting at the best of times, but when you get into school for a meeting and there is yourself and 7/10 professionals around the table it can sometimes actually be frightening. To prepare parents for such meetings I go through all the issues that need to be addressed, and the points that the parents feel they must point out.  We write them down on what can sometimes be a long list, so in the meeting the parent is satisfied that they have said everything they want to. Or if it is too emotional for them, I will bring these points up for them.

I have gone into meetings where the parents have been an absolute quivering wreck, feeling sick and just wanting to go home, yet just by me saying, “I am with you, you are not alone, I am there to support you” brings out the best in the parent. They are assertive, they get their points across and work down their list of questions. I minute it all for them. When they leave the meeting, although they hardly remember a thing that has been said, they feel so empowered.

That is one of our main aims, to empower parents to be competent and confident in supporting their children.  My biggest concern over the years has been to ensure that when a parent gets their child’s statement to ensure that it is quantified and qualified. So it does not say something like a ‘ systematic programme of speech therapy’. What does that mean? One hour a day,  a week/month/term and by whom. If it isn’t quantified and qualified how can it be legally challenged? A school might interpret that as an hour a month, a parent might interpret that as a couple hours a month. It needs to be fully explained in the statement.

Another part of school life that has really annoyed me are exclusions and as I write this I am eagerly waiting  for the release of the results of the Children’s Commissioner, Dr Maggie Atkinson’s inquiry into exclusions: http://www.childrenscommissioner.gov.uk/  This is due out 19th March 2012 and I will reading this with a fine toothcomb, hoping she has captured the inequalities of exclusions for children with Disabilities, especially those with disability related behavioural difficulties.

My son was excluded 11 times in one year, what did he learn from this? Simply that every time he wanted a couple of days off school to misbehave,  it worked. No matter how hard I worked with the school and I worked a lot harder than the school did on this one, they still excluded him until the day the big permanent exclusion came. My son and I cried together all weekend. The result was an independent special school which could not cater for his academic ability.

For those just embarking on this journey I wish you luck, get as much expert support as possible you will need it.  If you don’t know where to start contact your local parent/carer forum, website address above and they will advise you.

Disability groups call for pause for thought in welfare reform

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

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

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

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

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

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

Source: National Autistic Society

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

A new SEN Advice service from Contact-a-Family

Contact  a Family, the national charity that helps support parents with disabled children has launched a new SEN National Advice Service.

This service will help families whose child may have special educational needs – we will be able to provide advice and information on any aspect of their child’s education. Help is available through their helpline 0808 808 3555, or post a query on Facebook or Twitter and a SEN adviser will get back to you. Alternatively drop us an email: helpline@cafamily.org.uk.

The service is available for anyone who thinks their child may have special educational needs – whether or not they have a disability or has already been identified as having SEN.

The Contact A Family Service can advise on:

The SEN process – including:

  • Early years
  • School Action and School Action Plus
  • Individual Education Plans (IEP’s)
  • Statutory Assessment/ Statements
  • Annual Reviews
  • Transition planning and education after 16
  • Appeals

Other general education issues as they affect children with SEN, which include:

  • Transport to school
  • Bullying
  • Exclusion
  • Medical needs in school
  • Attendance at school
  • Home Education

You can find out more about the service and Contact A Family in general here: http://www.cafamily.org.uk/families/SEN.html

Report finds government misled MPs and peers of disability benefit reform

A NEW REPORT entitled Responsible Reform, published today by disabled people (9 January 2012), finds that government misled MPs and peers over the hostility to disability benefit reform.

It finds that Parliament has been given only a partial view of the overwhelming opposition to the Coalition’s planned reforms of a key disability benefit, Disability Living Allowance (DLA).

It also finds that this opposition was previously not released to public scrutiny by the Government.

The report is based on the responses to the government’s own consultation on its planned DLA reforms, which were only made public once disabled people requested them under the Freedom of Information Act.
Findings include:

* 98 per cent of respondents objected to the qualifying period for benefits being raised from three months to six months
* 99 per cent of respondents objected to Disability Living Allowance no longer being used as a qualification for other benefits
* 92 per cent opposed removing the lowest rate of support for disabled people

In all three cases, as well as many others, London’s Conservative Mayor, Boris Johnson also objected to the proposed changes. He said in his response to the official consultation:

“The Mayor would call for the Government to retain the three-month qualifying period as the increase to six months will mean that people with fluctuating conditions have increased difficulty meeting the qualifying period. People with fluctuating conditions face the same barriers that all disabled face in relation to higher costs of living and DLA is essential to maintain a decent quality of life.”

“We would recommend that the passporting system remains the same as under DLA, as it has worked well when signposting people to additional benefits to which they may be entitled.”

“The Mayor does not support this change, as those on the lower rate care component may have additional costs as a result of their impairment but may lose their access to this benefit as part of the proposed removal under the reforms.”

The new report, Responsible Reform, suggests that the government’s DLA consultation breached the government’s own code of practice and was “highly misleading”.

Paul Farmer, Chief Executive of the mental health charity Mind, said: “The ‘Responsible Reform’ report is essential reading for everyone with an interest in Disability Living Allowance (DLA) reform including the Government and Department for Work and Pensions Select Committee. It is a vital contribution to the debate on reform and a huge achievement for the volunteers who have produced it.

“As well as forensically deconstructing many of the arguments offered by the Government for their proposed reform, the report shows that much of the rise in claimants over recent years has been down to better access to the benefit for people with mental health problems, whose needs are often fluctuating and invisible.

Among the report’s conclusions are that:

* Only seven per cent of organisations that took part in the consultation were fully in support of plans to replace DLA with PIP
* There was overwhelming opposition in the consultation responses to nearly all of the government’s proposals for DLA reform
* The government has consistently used inaccurate figures to exaggerate the rise in DLA claimants
* The report shows that nearly all of the recent increase in working-age claimants of DLA has been associated with mental health conditions and learning difficulties. Between 2002 and 2010, the number of working-age DLA claimants – excluding those with mental health conditions and learning difficulties remained remarkably stable
* 98 per cent of those who responded opposed plans to change the qualifying period for PIP from three months (as it is with DLA) to six months
* 90 per cent opposed plans for a new assessment, which disabled people fear will be far too similar to the much-criticised work capability assessment used to test eligibility for employment and support allowance (ESA)
* Respondents to the consultation repeatedly warned that the government’s plans could breach the Equality Act, the Human Rights Act and the UN Convention on the Rights of Persons with Disabilities

Use the links below to read the full press release and to access the report and the blog of Diary of a Benefit Scrounger, one of the report’s authors.

Source: Ekklesia | Full report for download | Blog from one of the report’s authors

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!

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

What do parents of a newly-diagnosed child need?

I recently attended the launch of Family Voice Surrey, the new local forum for parents and carers of children with SEN and disabilities in Surrey. It’s part of the National Network of Parent Carer Forums and aims to give Surrey parents a voice in the policy and decision making process for disability and SEN services.

As part of the table discussions we were asked to identify the top three challenges facing families with children with disabilities and SEN in the county. When each table’s facilitator stood up in turn and read out their lists, almost every table had identified the same issue – information and support after diagnosis.

Everyone agreed that was is needed is an independent support worker who had all the answers to the questions that a diagnosis sparks in parents. This includes where to find information about assessments, financial assistance, support groups, access to services and education about how to help their child and so on.

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

But then comes the stark reality that they have to take action to help improve their child’s life chances – and that means finding accurate information and at a local level – who is a good paediatrician, which are the appropriate schools, does my child need an assessment for a statement and how do I go about that? How do I find out about occupational therapy or speech and language therapy?

There are lots of great volunteer organisations out there, but the problem is finding the ones that are right for you and your family. So, what is needed is someone who can be sympathetic and knowledgable and who can act as a support and a signposter, maybe even an introducer to that the family needs.

So, who can provide such a service? Who will fund it? These are two good questions – maybe someone reading this post has an answer. If you have any ideas how  this can be achieved or what else a newly diagnosed family might need, please leave a comment…

Education and Training (Young People with Autism) Bill introduced.

A private member’s bill has been introduced in parliament to make provision for the education and training of young people with autism and Asperger’s syndrome and to ensure that work opportunities are provided for them.

The bill is being sponsored by Conservative MP for Ilford North, Lee Scott.  Introducing the bill, Mr Scott said, “One of the biggest worries for parents who have children with autism, Asperger’s or any other special needs is what will happen when they are no longer here. Will the young person, when they become an adult, be able to look after themselves? Will they have gainful employment? ”

He said that, according to the National Autistic Society, there are more than 350,000 working age adults with autism in the UK. NAS research has found that, whilst many people with autism want to work, just 15% of adults with autism are in full-time paid employment and 9% are in part-time employment.esearch shows that 79% of people with autism on incapacity benefit want to work, but need some support to get into work and retain employment. One in three people with autism is without any financial support from employment or through the benefits system, with many reliant on their families for such support. In a study carried out by Research Autism in 2008 for NAS Prospects London on the experiences of employing people with autism, seven in 10 employers questioned had had a very positive experience of employing people with autism, Asperger’s or other related conditions, and said that they would recommend it to others.

Mr Scott praised an organisation called Kisharon, which runs a printers and a bicycle repair shop staffed solely by young people with autism, Asperger’s or other special needs. “Together with a group called Interface, which is one of my local groups serving young people with autism, Asperger’s or any special needs, and the London borough of Redbridge, with private backing—I am sure the Treasury will be pleased to hear that, as there will be no financial impact on the Treasury—they are looking at how we take matters forward.I have had meetings with leading companies where we plan to run a pilot scheme that will allow them to employ young people and for the young people to have training through local authorities so that they can achieve what they deserve—the best possible future.”

Mr Scott went on to cite one young man who found it difficult to interact in the workplace. “An employer took this young man on, although there were difficulties. There were days when perhaps the young man took offence or had a problem with things that others may not have, but that firm took that into account and worked with that young man and he has now been there for some three years and is a valued employee.”

He went I also want to consider how this scheme can be rolled out, such as accommodation provision and assessment of skills such as computer or IT ability. “We know only too well that many young people with autism or Asperger’s syndrome are brilliant with computers and IT, but may not have great communication skills in the workplace. There is no reason why they cannot work from a satellite centre or from home,” he said.

The bill is set for its second reading debate on 20th January 2011.

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

SEN conference, Towards a Positive Future, Review part one.

I attended a very interesting conference on special educational needs on Friday. It was held to mark the launch of a new organisation aimed at providing a ‘one stop shop’ to parents needing to find professional services such as speech and language and occupational therapy for their children. It aims to establish a database of professionals who can work with children in teams that talk to each other and deliver a seamless service for the child. It’s still at an early planning stage and its founder, SLT professional, Janet O’Keeefe, is actively looking for ideas and people willing to join her.

The event also marked the launch of Janet’s book, Towards a Positive Future, which I have written about here.

The conference had several interesting speakers some of whom I hope to be able to bring you more from on this site in the weeks to come. The event was held at the Mary Hare School for hearing impaired children near Newbury. The school does inspirational work in providing an education for its pupils, helping each through individually designed hearing equipment. As a non-maintained state school, the school’s head, Tony Shaw, said they are ‘not considered to be part of inclusion’ and have had their funding cut by central government. This, despite the Education Secretary, Michael Gove, himself having a sister with a hearing impairment.

The school has had to diversify to survive, establishing an ear mould lab that services the NHS. Despite this, Mr Shaw says they never forget what they’re there for. He said, “At the core are the children we have the passion of serving.”  It’s a sad fact that, in the politics and cost-cutting of government both local and national, this message is too often overlooked.

Another speaker was Kevin Geeson, CEO of Dyslexia Action, who talked about the opportunities and risks of the Green Paper. He highlighted concerns about the assessment of hidden disabilities such as dyslexia in that it may not be picked up early enough and the question of who will control the personal budgets given to children to provide for their SEN. Mr Geeson said the Green paper brought an opportunity to provide the proper skills and support for teachers to include all children in the curriculum. He said, “Good teaching for children with hidden disabilities is good teaching for all.”

Education solicitor, Inez Brown of Anthony Collins solicitors, set out the legal framework and funding of special needs and pointed out the problem with parents appealing against SEN decisions for children at the new Academies because the Academies do not fall within the Education Act. She also pointed out that the Green paper removes Speech and Language and Occupational Therapy out of educational provision – something every parent of a statemented child should be aware of. This means that the local authority cannot be challenged about these things at a Tribunal.  Ms Brown also made a startling  statement about the trialling of the new green paper which has just been announced and I am hoping she will be writing more about this on this site very soon.

The conference also heard from internationally acclaimed academic, Professor Heather Van Der Lely who has developed an early-identification test for dyslexia called GAPS. I will write a separate piece about this so won’t go into detail here. The professor pointed out that seven per cent of children have a specific language impairment – seven times the incidence of autism. She is trying to bring about the widespread use of GAPS which, she says, is quick, efficient and highly accurate. The crucial issue is, of course, that there are not enough Speech and Language Therapists to help all those that the test could identify. Perhaps the government should focus on how to recruit more SLTs into the profession and create a environment that enables enough of them to stay within the NHS.

The next post will detail the speakers from the afternoon session of this very enlightening conference.

Links for this post:

http://www.dyslexiaaction.org.uk

http://www.AnthonyCollins.com

GAPS

Mary Hare School

Twitter: @JanetOKeefe@kgeeson

The SEN Green Paper

I’ve been wading my way through the Green Paper on SEN and one thing really sticks out – what happens to those children who, like mine, already have a statement? Parents, like me, fought hard to get them the provision they need, enshrined in law.My boys are both funded by the LEA – what happens to that?

One mum, Lisa, said to me, “I had to self refer and battle and luckily with the support of a very experienced Ed Psych, get the statement and still battle to keep the stability, so I am worried. I keep ploughing through little by little. IPSEA have said they need finer details I just don’t trust any government at the moment because of the cutbacks and recession.”

The NAS says,”Parents have told us that they really value the protections that statements provide, which are an essential tool in helping to fight for their child’s rights and to hold schools and services to account if they fail to provide adequate support. Many parents we speak to have been battling for years to get their child’s needs recognised, understood and met. If the Government is to remove statements then they must ensure that they fulfil their promise to provide the same level of legal protection, otherwise they will be unsuccessful in their commitment to stop vulnerable children falling through the gaps.”

Any efforts to join up the different threads of SEN and help parents get the assistance they need for their children is to be welcomed. I did note that although the numbers of SEN at School Action and School Action+ have grown, the number of children with statements has stayed stable – indicating that there is no ‘explosion’ in the number of children with complex needs. In fact, there are many children who need to be statemented who can’t get one no matter how hard they try.

The last thing I want is to have to go through the support process again – been there, done that and proved without doubt that my children need the support they now have. I’ll be looking forward to getting more detail as the process continues.

A Good Image for Asperger Syndrome

Cover for This Last Summer

I’m about to blow my own trumpet, so look away now if  you’re not into hearing people’s good news…

I’ve just published my novel, This Last Summer, on Amazon Kindle and it will also be available in print in a few months. I’m writing about it here because the book features a character with Asperger Syndrome. Ben Chambers isn’t the main character – that’s his TV reporter sister, Maddie, but my aim was to portray a high-functioning character with AS to show that it is perfectly possible for people with AS to live fulfilling lives, despite their difficulties.

Ben is a young man just completing his Phd, still living at home, but often underestimated, even by his own family. Sure, he has difficulties in tough situations – but he has a good support system and this makes all the difference to him.

I hope I’ve done a good job with Ben – if you get a chance to buy the download on either Kindle at Amazon UK, Kindle at Amazon US and Smashwords in all sorts of formats. It’ll also soon be available on ibook and at Barnes and Noble in the US.

Please help this very SPECIAL girl

This is a story about a girl with VERY special needs. Please read it and donate if you can – her parents need to raise £300,000 by Christmas to help fund life-saving treatment in the US for Neuro-blastoma:

The story so far..

Robyn Higgins

Robyn Higgins

In May of this year our beautiful 7yr old daughter Robyn was diagnosed with  Stage 4 Neuroblastoma, a rare and aggressive form of childhood cancer.  The tumour was growing from her pelvis and had spread to her bone marrow.

So far her treatment has consisted of 8 doses of chemotherapy, given every ten days (Robyn has had 9). She has spent the majority of this time in hospital for chemotherapy, infections requiring intravenous antibiotics, or for blood / platelet transfusions, stem cell harvests, scans and bone marrow aspirates.  When not in hospital the community nurses must visit on an almost daily basis to administer Robyn’s medication for her.
At the beginning of September Robyn underwent a 9 hr operation, during which her tumour was removed.  It had wrapped it its self around various nerves within her pelvis and spine.  Unfortunately the surgery has caused nerve problems –  she has repetitive neuropathic pain in her right leg and is currently unable to walk.  We have been told that this should improve in time with further physiotherapy.

On the 4th of October Robyn was admitted to the Royal Marsden Hospital where received a high dosechemotherapy over 5 days to ‘wipe out’ her bone marrow.  She then had own previously harvested Stem cells given back to her to assist her bone marrow to recover.  This resulted in her being her very ill and in hospital for at least 6 weeks.
She will then have a further 3 weeks of radiotherapy and then 140 days of oral medication

Robyn Higgins

Robyn during treatment

Her condition will be reassessed at the end of her treatment.  We have been told that if the cancer returns, it will not be treated in a curative way.  Unfortunately the chance of relapse with Neuroblastoma is high leading to such low rates of survival.

So, with a prognosis of 40% survival, our biggest fear is a relapse after the intense, aggressive treatment that she has endured so far.  Preventative, antibody treatment is currently not available in the uk.  To increase her chances of survival it is crucial that she benefits from such treatment that is only available in the Memorial Sloan-Kettering hospital in New York.  This treatment has to be given at the same time as the final phase of the treatment – the 140 days of Retinoic Acid and the cost is in excess of £300,000   We think this treatment will start in January so we haven’t got long to raise the amount of money so needed to give this very brave little girl the extra chance of survival that she so desperately deserves.

Please help them.

To donate, use this link: http://www.robynhiggins.com/


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Don’t Write Me Off – NAS campaign

The National Autistic Society has today released figures showing that only 15% of adults with an autustic spectrum disorder are in full time paid employment.This means that 85% of the 300,000 people with an ASD may only find part-time work, most probably low-paid and rely on family for support and benefits for income. The NAS also says that many of those who do rely on government help are finding it extremely difficult to navigate the benefits system since changes were made to incapacity benefit.

From The NAS Campaign, Dont Write Me Off

From The NAS Campaign, Don't Write Me Off

We are not talking here about the work-shy, we are talking about people who want to work, to have some level of independence but who find the world just isn’t set up to help people like them. The NAS is launching its ‘Don’t Write Me off’ campaign and says a key problem is that staff at the Jobcentre Plus, where jobs are advertised and who decide which benefits someone is entitled to, have a lack of understanding of autism.

This statistic is extremely worrying for us as a family with two sons with Asperger’s Syndrome.Although our children are both in a school where learning skills for life is an important priority, what happens to them if they encounter problems through ignorance or prejudice from those in authority when they go out into the wider world? It is the aim of the school that by the time they leave, they will be as well equipped as anyone else, if not better, to deal with adult life but as we parents of ASD children know, for them, unexpected and unforseeable events can be extremely difficult to deal with.

The NAS found that:

  • just 15% have a full-time job
  • one-third are currently without a job or access to benefits
  • 79% of those on Incapacity Benefit want to work.

The National Autistic Society is demanding that the system should be made to work for people with autism and the Government must deliver on its commitment that no one should be ‘written off’. It says adults with autism need:

  • Employment and Support Allowance to work for them
  • Jobcentre Plus staff to understand and meet their needs
  • a national strategy to transform access to employment.

I have just emailed my MP, Jeremy Hunt in Surrey South-West to ask that he supports this campaign. You can do the same with your Member of Parliament using this link: http://www.dontwritemeoff.org.uk/ It takes just a couple of minutes and you can feel satisfied that you have done something today to help people with autism.

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Daily Mirror Launches Caring For Carers Campaign

The Daily Mirror is today launching a new “Caring For Carer’s” campaign to highlight the disgraceful situation regarding the level of benefits for people who care for disabled relatives and friends.

At the moment, Carer’s Allowance is just over £53 a week, no matter how many people you care for. Both my sons qualify for Disability Living Allowance for their ASD and so I am entitled to receive this paltry amount. But, should I be lucky enough to be able to find a part-time job that I can do while they are at school, I cannot earn more than £95 a week net or I lose the benefit.

Before I had children I could earn up to £200 a day. I had intended to go back to work after they were born, but because of their disabilities, I was not able to leave them in the care of anyone else. To do so would have meant finding a specialist nanny, the cost of which for two children would have wiped out my earnings. Added to this, the fact that a journalist’s life is shift-working and the situation would have been untenable.

When my sons were in mainstream school they would sometimes refuse to go because of the stresses they faced in that environment, meaning I would have to have them at home all day. What kind of employer could put up with a worker needing great chunks of time off? My youngest needed one-to-one swimming lessons as he could not cope in a group and this was expensive (and every child should learn how to swim if they are able). I also helped out in school several times a week because I felt so guilty that they were difficult to cope with.

Now, despite the fact they are both at a specialist school, I am still unable to get a full-time job because of the long holidays they have. I cannot leave them in a holiday scheme because they would find it distressing which would have a knock on effect for their lives and ours as a whole. So, we must rely on my husband’s income (and he was out of work for six months this year), our boys’ DLA and my princely sum of £53.10 Carer’s Allowance. We live in Surrey, an expensive part of the country, because it is near to their school. We are only glad that their fees are now paid by the LEA or we would have to sell our house and seriously downsize to afford the cost. Before the LEA agreed to take responsibility for the fees, all the DLA and Carer’s Allowance went towards making a small dent in the special school fees. Even now, it still disappears into the great well of  things they require for school and to support their special needs.

But still, I would say that we are lucky because we have at least one decent income (that my husband has to travel three hours a day to earn). What if something happened to him (God forbid)? Then I would have to care for all three of them on £53.10 a week. This is the situation for many carers today. Many face huge debts as well as the stress of caring for someone who is sick or disabled or the headache of making ends meet on a pittance.

This is what the Daily Mirror says:

These are the Mirror’s three demands for the Caring for Carers campaign, which we are launching today:

An immediate Government review of carers’ benefits and the Carer’s Allowance to be increased.

More respite breaks and health checks for carers.

Carer’s Leave to be made into law so carers can ask employers for discretionary time off work.

I whole-heartedly welcome this campaign and hope you will support it too. How can you help? You can visit the Daily Mirror’s blog page by Emily Cook to read the whole story. Then you can visit the Carer’s UK site to sign their Poverty Charter in support of the campaign. If you’re reading this you probably have an interest in special needs, so I hope you will take a couple of minutes to do this. I am a carer, though lucky enough not to be on the poverty line. After our recent brush with redundancy though, I know that could change in the blink of an eye. So I am sighing the charter and will do anything I can to support this worthy cause and I hope you will join me.

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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.

Journey’s End for our Statement – And a Brighter Future.

Just to update the post about my son getting the statement of Special Needs, we’ve just heard that the LEA has agreed to fund him at his independent special school. Great news and what a relief!

When they issued the draft statement they said they were concerned how he would manage in mainstream secondary.. so they were going to recommend mainstream secondary with support. Now we know, don’t we, that for many children with Asperger’s, it’s not a question of someone sitting with them or being withdrawn into social skills groups for so many hours a week. It is more a constant nudging that they need and a vigilant eye for when things are starting to go wrong.

During my research, I spoke to several mainstream SENCOs (Special Needs Coordinators). They are all dedicated to their pupils and do a good job in difficult circumstances, but one said to me that they sometimes “don’t hear from their ASD students for months until something goes wrong”. She was saying this to illustrate how these students ‘coped’ adequately with day to day school life. All I could think was that at my boys’ school the teachers are in constant contact with the boys and things are never left for months until something goes wrong. Although this teacher was trying to be positive and reassuring, I knew then that my son would end up depressed and unhappy in an environment where he could go unnoticed for months at a time.

Why should he simply ‘cope’ when other children thrive? This is not what I wanted for a boy who is incredibly bright with enormous potential but who is also extremely sensitive with sensory issues and problems with social integration. On the face of it, you wouldn’t think there was anything different about him. But it is precisely when ‘things go wrong’ that you see that he is not the same as everyone else and does not have the coping skills that most children his age have.

This is what More House School teaches him. As well as supporting him academically, it supports his social needs on a daily basis and when they see that he is heading for trouble or he becomes upset, they can help him develop the skills he needs so that when he is an adult, difficult situations don’t throw him off-course. This means that when he leaves school to go out into the outside world, he will be as well-equipped as anyone else to deal with all kinds of situations and different types of people.

If we hadn’t managed to get the LEA to agree to fund him, we would have had to pay £13,000 a year for our son to receive the right kind of education to give him the best chance of a successful life. We had tried mainstream and had found that, with the best will in the world, the kind of support he needed wasn’t available. So why should we have to pay for him to get what every other child in mainstream gets without any bother? We didn’t opt out of the state system out of snobbery. We were, in effect, forced out, because our sons were not mainstream children.

Our LEA seems to have woken up to the fact that it is cheaper and easier to pay for children to go to this particular school than it is to find all the support they need within the state system. If they had to make their own school for high-functioning ASD boys, complex dyslexics (who often have co-morbidities), and children with great Occupational Therapy and Speech and Language needs, they would have all the capital costs to pay on top of  the per-pupil cost. These would include buildings and maintenance, electricity and all those other costs that don’t include teachers and support staff salaries and benefits.

Just paying £13,000, and leaving it up to someone else probably seems like a great deal. We haven’t asked them to pay transport – we moved to be closer so I can easily take them myself every day as I would if they were at any school. This is my part of the deal as transport costs are a never-ending headache for LEAs and I see no reason to add to the burden when I am in a position, and more than happy, to take them myself.

However, although Surrey, our LEA, have done the right thing for both my sons, (and three cheers for them), I know of other families who are having to fight tooth and nail and at great expense to get their local authority to do the same. I know of one child in Hampshire, who got a statement with no argument but despite his severe social as well as physical needs, the LEA thinks he will be able to cope with a mainstream placement against ALL the advice they have received. This is pig-headed stupidity and a game of brinkmanship with parents to see who will blink first. There is no logic to it and when the case gets to Tribunal, Hampshire will lose and will have wasted taxpayers money fighting a case that didn’t need to be fought. The family will have suffered emotionally, financially and completely avoidably.

Hampshire have recognised this child’s needs for OT and SLT in part two of his statement and yet have made no provision in part three of the same document and they think this is acceptable. They think it is okay just to dump him in the local secondary where his needs cannot be met (and the family has the documentation to prove it). Hampshire should know that it won’t intimidate this boy’s mum. She is every bit as determined as I was to make sure her son gets the placement he needs. It is appalling that she should have to put herself under considerable strain to do so. I will keep you posted as to what happens.

Mother behind autism advert meets Brown – London Evening Standard

Mother behind autism advert meets Brown – London Evening Standard

A mother who wrote a message to Gordon Brown on billboards across the capital to highlight the plight of autism sufferers is to meet the Prime Minister today.

Polly Tommey, from Hampton, whose 13-year-old son Billy has the condition, said she would use their meeting to call for more support for thousands of people in Britain. Her autism charity estimates the Government could save £508million a year by giving jobs to people with the disorder.

She said: “I’m delighted and even thinking of voting Labour for the first time in my life after this. But what we now need are results.”

Mrs Tommey, 42, had made repeated attempts to reach Mr Brown and other ministers over the past few months but failed to get any response until now.  The mother-of-three had accused the Government of ignoring the “overwhelming stress and demands faced by families of those with autism”.

More than 500,000 people in Britain have the condition. She said: “Billy has a bleak future in our blinkered world. It is not fair that his potential is dismissed.

“Unless the problems of autism are understood and support is more widespread, we will see an underclass of desperate autism households.”

Mrs Tommey, a former actress who has worked as a body double for Charlotte Rampling, said she also asked to meet Tory leader David Cameron and Liberal Democrat leader Nick Clegg, but both said they did not have time. Her charity, the Autism Trust, was founded by Mrs Tommey after Billy was diagnosed aged two. Her £500,000 “Dear Gordon” campaign, at 76 sites across London in April, was funded by sponsors and advertising outlets.

Source: Sophie Goodchild, London Evening Standard,11.06.09

UK lacks Adult Autism/Asperger’s Services

The news today that eight out of ten doctors need more help to spot autism shows the huge gap in services available, particularly for adults with ASD in the UK. The National Audit Office survey found that thousands, especially adults, are failing to get the right diagnosis and hence the right treatment or access to support services that they need.

Eighty per cent of doctors said they felt they needed additional guidance and training to help them identify and treat people with autism more effectively. Indeed, outside this report, this figure is echoed in schools, where many staff say they also need additional training to help children affected with High Functioning Autism and Asperger’s Syndrome.

The reports highlights the fact that high-functioning people with ASD are particularly vulnerable. They are often missed because around apparently 200,000 adults with autism do not have a particular learning disability. This group, the report “Supporting People with Autism through Adulthood” says, often fails to secure appropriate support, as health and social care services are mainly set up for those  with a learning disability, a physical illness or disability, or a mental health problem (which autism is not).

Almost two thirds of local authorities say they felt that current services for adults with autism are limited. Providing specialised support could improve outcomes for this group of people and their carers, and potentially enhance value for money, as the costs of establishing such support could be outweighed over time by overall savings.

The truth is that often people with Asperger’s Syndrome are of above average intelligence with areas of particular strengths, but because of their social and integration difficulties, they end up either in low-level jobs or on benefits because they do not have the interview skills to secure appropriate work.

The report says “Greater awareness of the numbers of people with autism, as well as better understanding of autism amongst those providing health, social care, benefits, education and employment services, would lead to improved quality of life for those on the autistic spectrum. Specialist support and joint working across all areas – clinical, social and employment – could improve the transition from childhood to adult services, make services more effective and improve value for money.”

There are several bills concerned with autism going through parliament at the moment, as mentioned in earlier posts on this blog. For children, there is more recognition that children affected by Autistic Spectrum Disorders need additional support in social skills but even so, a recent Cambridge study found that for every three children diagnosed, a further two go undiagnosed. If these children go through school and into the bigger world without intervention, they will only add to the figures this latest NAO study has found.

I believe that teachers or at least one member of staff in schools, preferably the SENCO, should be well trained in spotting autistic spectrum disorders and should have the backing of the school to do something about it. However, it is sometimes the case that when the school does spot a need, they do not get the support of the parents to do something about it.

A further problem is that when people who have received services throughout childhood then reach adulthood, the support they have had simply disappears and they are left to cope by themselves, or often remain in the family home with ageing parents, unable to forge an independent life because of their ongoing difficulties. Indeed, the NAO report says a key factor would be that if the proportion of the local population with high-functioning autism were identified by specialised services and given appropriate support, they would be more likley to be able to live more independently or to obtain and retain employment. The report estimates that if such services identified and supported around four per cent or more of the adults with high-functioning autism in their local area, they could become cost-neutral across public spending as a whole over time, as well as resulting in additional earnings and reduced expenses for individuals.

To read the whole report, click here.

Long ago..when I was somebody

Long, long ago, before I was ‘Special Needs Mum’, I had a great career as a television journalist and news reader. I loved it – the job, the lifestyle, the image, everything. My last job was reading the bulletins that went out on NBC/CNBC Europe – I was famous in Sarajevo, for God’s sake! (UK, not so much!) I may have gone much further if I had stuck with it.

So what happened? Why would I give all that up? The answer, my friends, came in the form of two very demanding sons, born close together and from whom I could not be parted.

I read the other day in the Sunday Times magazine about Natasha Kaplinsky combining motherhood with her high-flying career and not getting much sleep, despite the inevitable nanny/helper. Her career was much more high-flying than my own when I had a baby, but I could have gone down that route, getting a nanny who would help take the strain while I continued gracing the TV screens of far-flung places in Europe and receiving sticky fan mail written in green ink.

My baby however, was not, in retrospect, what you’d call average. He could hold his head up almost from birth. He would lie there awake at the most unkind hour of the night, his blue eyes glinting in the reflected streetlight from outside our Clapham flat. He didn’t sleep through the night for eight months. When he cried, it was loud enough to wake the dead. He crawled early and walked at 9 1/2 months; he was always on the go. We thought he might actually be an alien.

He hated being bathed, dressed, put in his pushchair, changed, put down. He liked being fed and being entertained. As inexperienced parents we thought that perhaps this is what all babies were like. Early trips to the baby gym convinced us otherwise. There was nothing ordinary about him; he was super-bright and hyperactive and it was clear to my husband and I that we could not leave him in the care of anyone else. This meant I could not go back to work immediately.

By the time he was ten months old, I was expecting our second child so again, going back to work was unfeasible.

Our second son was born with a clicky hip, needing a splint and extra care. From the time he was six weeks old, our eldest would walk by him and smack him on the head. Every time. By now, our twenty month old could do jigsaws meant for five year olds and make complicated duplo models. We were convinced he was a genius!

When our youngest began to have Reflex Anoxic Seizures just after a year old (see www.stars.org.uk for help with this condition) it was clear again that a return to work was not on the cards. He could have up to three seizures in one day, usually triggered by his brother being mean to him.

I began to do voluntary work for the charity STARS, using my journalistic knowledge to help with their newsletters and press releases. This turned into helping them with a big heart rhythm campaign (see www.aaaw.org.uk) and then on to learning about how to update their web site.

Over the years this has developed into my own business at www.tirraoro.com. I work from home because now that both my boys have been diagnosed with Asperger Syndrome and we know how they need to be helped, I couldn’t leave them in after school care or regular holiday play schemes.

Too many years have passed now for me to go back to where I was in TV and I’m too old and have too many responsibilities to compete with the young, thrusting twenty-somethings who can work all the hours they’re asked to for not-too-great amounts of money. I’m not sure it would be as much fun either, as in the seat-of-the-pants days when I worked for the newly-created Meridian TV or with mad Croats and Australians in WTN’s foreign TV News Agency, although maybe that’s just the rose-tinted memory glasses.

I read with interest all the furious stay-at-home vs working mother debates and how one is better than the other or not, but for me, the debate is much more complicated than that. I do what web-sites, PR & design work I can from home for small businesses and charities; I’ve written two, as yet, unpublished novels; I’ve passed an OU course in Social Science and I’ve successfully researched and secured two statements of special needs for my sons. And then there’s this blog, designed to help and entertain others like me.

I feel guilty for not bringing in as much money as I could if I worked full-time and sometimes I feel a little regretful at leaving a career I loved, especially when I see people I know still doing it. But I take comfort from knowing that if I had left my children to go back to my career, it would have been almost impossible to spot that they had complex and underlying special needs, nor done as much as I have to get them the help they need. Life is stressful enough as it is; with a full-time job as well, I would have been booking my stay in The Priory.

I know there are mothers of children with SEN who do work full time and their children have not missed out, but personally, I would have found it very difficult to do both, at the level I wanted without a nanny, which I also didn’t want. Having a job like I had meant working shifts, long hours, being called in when a big news event broke and not being able to say no without it dentingyour career prospects. I loved my job so much I would have found it impossible to give as much to both it and to my children without something going pear-shaped. If someone reading this does both those things with autistic children and without considerable support, then hats off to you, I’d love to know how you do it so I can write about you with admiration!

But I’m sure I am not alone. How much talent is going to waste because mothers cannot return to the hours they used to do or find a job that will give them the flexibility they need to use their talents to the full? Maybe I should start a website for people like me who are good at what they do but can only work a few hours a day. If there is already one out there – let me know!

Call for increase in Carer’s Allowance

UK Autism Foundation backs call for an increase in Carer’s Allowance

The UK Autism Foundation has backed the call for a substantial increase in the carer’s allowance.

There are six million carers in the United Kingdom who look after family members or friends at home and often struggle to pay for their basic needs. Carers are finding it difficult to apply for the allowance because of the restrictions -you have to be caring for more than 35 hours a week. You cannot study for 21 hours or more. If you are receiving a state pension, the two benefits cancel each other out.As a result of the restrictions fewer than 500,000 people get the carer’s allowance. The UK Autism Foundation has joined many UK charities, calling on Her Majesty’s Government to increase the allowance and to place less restrictions – in order for carers to receive financial support.

Ivan Corea of the UK Autism Foundation said: ‘There are families with autism who are plunging into poverty as a result of the current economic crisis. The welfare system needs reform but parents and carers of children and adults with autism and Asperger’s Syndrome need urgent help not in ten years time but in 2009. We are calling for urgent help for parents and carers where autism is concerned – the UK Autism Foundation has been campaigning for substantial increases in tax credits, the disability living allowance and the carer’s allowance.’

Over 200 MPs of all parties in the House of Commons have signed three early day motions backing the call of the UK Autism Foundation for more support for parents, carers, children and adults with autism and Asperger’s Syndrome including increasing the carer’s allowance.

There are over 500,000 people with autism in the UK. Many parents care for children and adults with autism and Asperger’s Syndrome.Many are struggling to pay bills as a result of the economic downturn. Some are in fuel poverty. The UK Autism Foundation has been lobbying Her Majesty’s Government to help parents and carers during these difficult times.

Source: UK Autism Foundation

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.

Parents rate local authority Disabilities service at 59%

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

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

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

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

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

Autism Assistance Dogs

Leo, our own Autism Companion.

Leo, our own Autism Companion.

As you may know, we recently got a puppy because we had read that dogs are good for children on the autistic spectrum.

Leo is still a puppy and has just started training with the scariest dog handler ever, but already he has bonded with our eldest son. Despite instructions from the trainer to ‘ignore the dog’, our eldest always has to say good morning and good night to the pup and to be quite honest, this makes him so happy I am disregarding the trainer (at the risk of being told off and made to lie down submissively at his feet..).

Our eldest takes him for a walk sometimes before school, always after it, and has already taught him to sit. Because he is very sensorily sensitive and volatile, I had imagined having a dog would provide comfort for him when his is angry with the rest of the family or feels unfairly treated (which is quite often, to his mind). To my great joy, this seems to be the case already. The dog has given him something to care about that isn’t himself and this is quite amazing.

However, training is a long process and having a dog is a large and long-lasting undertaking, however beneficial it might be for the children. I have just found a site that offers Autism Assistance Dogs that might be worth considering if you have autistic children between 3 & 10 and are thinking of having a dog.

The site, at http://www.support-dogs.org.uk/AADogs.htm says, “Our Autism Assistance Dog programme is designed to improve the quality of life of families with autistic children. It is based on the principle of providing a fully trained dog to the parents and the autistic child along with the correct training and support to ensure that the dog works to the maximum of its abilities.”

This kind of dog would not be not be necessary for our family, for example, as our boys are high-functioning, although our youngest has a nasty habit of walking out in front of cars. But I can see how useful one could be for more severely affected children. Disability Support dogs aren’t just for autistic children, but for those with other disabilities, especially epilepsy.

Take a look at their site – it’s a cause well worth supporting. Donate if you can.

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