Parent-carer forums – why not get involved?

As you know, I’m co-chair of Surrey’s parent-carer forum, Family Voice Surrey. I joined at the beginning of the year and realised just how much there was about SEND provision that I didn’t know. Although I was very well informed about statementing, there is so much more that involved complex needs provision, transition planning, vulnerable children and the morass of different funding streams is a jungle in itself.

My co-chair at FVS is Angela Kelly, herself the mother of two sons, both with special needs. Ang and I get on very well and have a very productive relationship. In fact, we’ve just been working hard to launch the new Family Voice Surrey website before we head off on our respective summer hols.

Being involved with a parent-carer forum is something we both feel strongly about as a way of helping other parents in a similar position to find the help they need and to be involved ourselves in shaping local special needs services for families who need them. If you feel like you can offer something, why not get in touch with your local forum? You can find a list here

Recently, we’ve both had to speak at a number of events and drafted a joint speech, which we then personalise with our own experience.  Angela spoke at a Voluntary and Community Services event in Surrey and I thought what she said about her own experience was really powerful and explained why parents who are already under immense pressure looking after their own children with special needs, feel compelled to give up their time to get involved and help others. I’m posting an excerpt here:

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I have been involved in the Surrey’s parent-carer forum for almost 18 months and been involved in the Pathfinder project since November 2011.  I became involved as a result of my own frustrating experiences of the current system. Endless hours on the telephone. Endless filling in forms, endlessly telling my child’s story over and over again.

Being heard but not listened to is one of the most frustrating feelings there is and for this to happen time and time again, when you yourself are exhausted and just about hanging on, well something had to change!

Parent-carer participation is at the very heart of the pathfinder project; it is mandatory. We are central to, and key partners in, the SE7 SEND pathfinder activity and this has been a learning process for all parties involved both parent and professional.  Far from being a lip-service ‘add-on’ or after-thought, our voices are the ones that should be heard the loudest over the noise of politics and officialdom. After all, it’s our children, that we love and worry about every day, who are the point of the whole exercise.

All parent-carers who are involved are a parent or a carer of a child or young person with SEN and or disabilities, so we have a wide range of experience between us of what it is like to live with and try to find the right educational, health and care solution for children with additional needs.  This is what makes parent participation vital, to make sure that any changes to the system actually DO improve support for children with SEN & disabilities which will, in turn, help their parents.

This gives us a unique perspective when it comes to our involvement in the pathfinder. Because of course, we are the ones still caring for our children’s needs, when the professionals have gone home for the day.We aim to bring an informed voice to the discussions for the direction of reforms for the various work streams. This involvement that has helped the professionals see the positive side and the potential benefits to parent-participation.

Two parents from the committee sit on each stream of work that is being tested.  These are, the Education, Health and Care plan, Early intervention / complex needs, personal budgets, the local offer, transition and vulnerable/looked after children who have no parents of their own to speak for them.

My overall experience of my involvement in the Pathfinder has been positive and I feel that as a parent-carer I am able to contribute to shaping the future for SEN and disabled children

Dear Miss Teather, an open letter about the pace of SEN reform

Dear Miss Sarah Teather

I know you mean well. I know you really want to do something to help improve the lot of kids with special needs. And you might think you understand the challenges faced by parents who have children with SEN and disabilities. But really, you don’t. You can’t, because, as far as I’m aware, you don’t have any children, let alone any children like ours. So while you might be able to intellectualise it, you really can’t possibly know what it’s like, unless you’ve lived it, day in, day out.

And something else you don’t seem to know about, is what is actually going on at ground level within the pathfinders for SEN reform. You might know what you’ve been told, but unless you’ve actually sat in on a few of the workstreams for the different pilots, or the Local Change Board, you really don’t know. And even if you have, it’s not likely anyone’s going to say, actually Miss Teather, you’re living in a parallell universe to the one that everyone, who’re desperately trying to put the pieces of this reform together, are in.

pencils

You’re planning, so you say, to inform the draft bill on the results of the pathfinder trails. Err, what trials? There will be trials – there are enough dedicated professionals and parents working to get them underway – but there won’t be any substantive results by the autumn. So what then? Are you going to press on regardless? Because if you do, then you’ve just wasted a shedload of money shelling out for the pathfinder authorities.

I watched the select committee on SEN last week online. All five experts said there should be a delay in bringing legislation. And you said, okay, let’s put it back a month or so until the autumn. I don’t think you meant autumn 2013, when we most certainly would have enough evidence to inform a substantial draft bill.

I know that your officials have been told that the pace of legislation is far ahead of the pace of the pilots, but it seems that no one is actually listening. Why not? What makes you think that you and your officials and the Rt Hon Mr Gove know better than those people who have been seconded to carry out the trials?

For a start – and I’ve mentioned this on my blog before (you do read my blog, don’t you – it’s award winning!) you can only start an effective EHCP pilot if

a)  you have some families who’ve actually signed up to it

b)  you have a Key Worker and a Plan Writer in place to help the parents through the process and to write the actual plan and

c)  you’ve actually finalised what a plan should look like. Unlike you, I’m on an EHCP workstream and we are closer to getting c) than we were, but it is so important to get it right that it needs a number of drafts.

As I said, it’s just my opinion, but at least I’ve actually been through statementing with my sons. Twice. And written a book about it. So actually, maybe my opinion is more informed than yours. Just maybe.

You can achieve all the reform you need without chucking the baby out with the bathwater because I’m not even sure there was a whole lot wrong with the statementing system in the first place. It just needed people to put the child at the heart of it and not egos, budgets or brinkmanship. It needed people to do what they were supposed to do, in a timely fashion. It needed more support for, often vulnerable, parents right through the process. It needed SENCos to be able to put the needs of the child first without worrying about their jobs. And it needed those SENCos to actually know what’s in the SEN Code of Practice. Some are great, but that’s no help if you’re at a school where the special needs help is poor.

As a result of the way the current system has been executed, literally thousands of parents have been left in debt, emotionally battered, angry and sometimes even divorced. A whole industry of well-paid SEN lawyers has grown up out of bad practice of local authority SEN officials who have forgotten who they’re there to help in the first place. And don’t think you’re going to put the lawyers out of business with the new reforms – at least not at the pace you want them done.

It’s not just a case of policies. It’s, first and foremost, a question of hearts and minds, of a will and an ability to do things differently. Training, and lots of it, will be needed. Inadequate training of staff in policies and cultural change will lead to poor results for the child, a bad experience for parents and an adversarial system. Kind of like the one we’ve got already.

And don’t think that every single professional is on board with your and Mr Gove’s reforming zeal. They’re not and if you’re going to make things work as they need to, you have to convince them that it’s a good idea or you’ll have failed before you’ve even started.

Are you listening yet? We, in Surrey, have some pathfinder events going on this week and on the 12th July. If you don’t believe what I’ve said here, why not throw on a disguise and pop on down so you can see what they’re saying about the pace of reform behind your back?

Look forward to seeing you (or maybe not, if your disguise is good)

Tania

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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More House – A School To Be Proud Of

Saturday was the last official day of term – Founder’s Day. This is something we all look forward to and I don’t mean for the strawberries, cream and sparking wine you get at the end either.

It is the day we get to celebrate our boys’ achievements throughout the year, hear the Headmaster’s end of year review speech and listen to a visiting VIP make the keynote address. This year it was David Moran, the new  Ambassador to the Republic of Kazakhstan and Non-Resident Ambassador to the Kyrgyz Republic, whose talk included the notion that these years the boys spend at More House School will help them forge their characters that they will take with them through their lives.

There is a prize giving, where the boys are awarded certificates for particular areas of excellence and this is all the more touching because many are given in subjects where the boys have faced real challenges. Each boy returning to his seat with his certificates was beaming with pride; a feeling that we parents marvel at, knowing only too well how difficult their journeys have been so far. For our own two boys, we laminate their certificates and put them on the wall of their rooms so they can be reminded every day that hard work gets results.

But the highlights of the day were the speeches given by the outgoing School Captains. The two sixth-formers, smartly dressed in suits, came to the podium to give accounts of their time at More House. The first opened by saying that when he arrived at the school he was a dyslexic. Now, upon leaving, he is a dyslexic with attitude and confidence. He has a place at university and thanks to the education he has received has a great chance at a successful life.

The second young man opened his remarks by noting his diagnosis of Dyslexia and ADHD. When he arrived at the school he said, he was unable to sit still long enough to learn anything, but at MHS he was never excluded from any event or activity (as I presume had been the case at a previous school). He had received a good education both academically and socially and he stood before us a fine young man and School Captain, a son to be proud of as I am sure his parents are.

Both young men took the time to thank the school’s Headmaster, Barry Huggett, who is held in the highest esteem by all the boys and their parents. Mr Huggett is an inspirational figure and he leads the school with dedication, dignity and passion. He announced that the latest GCSE results showed an 83% A-C pass rate, which considering the number and range of difficulties experienced by the boys when they arrived, is outstanding.

Several things became crystal clear for me yesterday. The first is that the dedicated sixth-former I have seen at many events is, in fact, the Music teacher, Mr Place, which just shows me how old I’m getting. The second is that, contrary to government inclusion doctrine, the kind of school you go to is absolutely key to your future life. Had the School Captain gone to a normal mainstream secondary, he may well have left at sixteen with no qualifications and little chance of a bright future. Now he has university to look forward to and a real shot at success.

Some of the boys get support in exams such as extra time or scribes to help them show their true potential. Mr Huggett aims to cut the number by half, and then within a few years, to eliminate the need for special help in exams altogether. This is a lofty goal but one that, knowing Mr Huggett and his staff, I can see being achieved.

To all the staff at More House School, have a wonderful summer – you’ve earned it.

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

Autism Costs UK economy £28 billion

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

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

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

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

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

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

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

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

Special Needs Mum.. on holiday 1

It’s that time again.. the long (3 weeks in our case) Easter break. We took advantage last week of finishing a week earlier than state schools by heading down to Cornwall to stay in a beautiful lodge at a country club, before the price went up.

The boys refused to travel without extra pillows, soft toys, blankies, laptops etc, which made our car full to bursting point, but, once wedged in, off we set. We arrived a mere four hours later with only one incident during lunch at McDonalds when Son2 peeled off all the monopoly stickers while Son1 was in the toilets causing trembly lips and watery eyes and a promise to visit McDonalds again during the week (something to look forward to).

On arrival, the children were delighted to find the lodge had a jacuzzi bath and that was their evening entertainment set. Instructed to only use enough bubble bath to wash themselves with, I left them to it while I went to unpack. I know, I know, although they are 9 & 11, they do have Asperger’s and perhaps I should have sat with them, but they were just across the hallway and I could hear them twittering and giggling away. Some time later I also heard a retching sound and dashed in to find Son1 standing, covered in so much froth he looked like bubble man with a bubble top hat, arms outstretched and wailing that he had swallowed some bubbles and thrown up. In the jacuzzi. OMG! How long had we been there?! They had totally ignored instructions and tipped half a bottle full of bubble bath into the already foaming jets. Once Son1 was hosed off in the shower, hubby and I then had the task of cleaning vomit out of the bath (thankfully the jets had been off).  Happy Holidays! More follows here.

New SENDIST rules

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

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

Among many others, he made the following points:

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

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

Surrey to review SEN Assessments

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

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

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

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

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

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

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

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

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