Special Free Schools – is it worth it?

A few weeks ago, I was invited to attend a conference about the formation of special free schools. I couldn’t make it myself as I had other meetings, but Claire Louise, from the popular and award-winning, A Boy With Asperger’s blog, kindly agreed to step in and attend for SNJ. Here’s her report:

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Is it worth the hassle (a 100+ page bid and one hell of a load of work) that comes with starting a Special Free School?

There are many factors that need careful consideration, as well as a number of different circumstances each need applying to. For example, Is the school already up and running, therefore requiring just “Free School” status? This could apply to any school (independent & non-maintained) this excludes that of state schools who can instead apply to become academies.
Maybe you are considering starting up a Special Free School from scratch. It may only exisit on paper or an idea in your head. Maybe its because there is a gap in SEN provision that needs filling, therefore an idea of a Special Free school makes sense.

So as not to confuse anybody (as we all know these things can be mind boggling) I’ll therefore take this one step at a time and will try to be a clear as possible as I do.

Firstly, What is a Special Free School?

A Special Free School is one that is funded by the Government yet run independently. So, you may ask how these are any different from independent schools? Independent schools are not reliant on the government for funding, instead these schools are funded by a combination of tuition fees, gifts, fundraising or in some cases income investments (for profit organisations). Non-maintained schools are normally run by not-for-profit charities, approved by the secretary of state to take children with statements of SEN.

So, What must a Special Free School Provide & how must it be run?

  • Provide education for children assessed as needing statements of SEN between the ages of 5-19 years of age.
  • Provide education to a minimum of 5 children
  • Only teach children with SEN or those being assessed as having SEN
  • Have regard to the SEN Code of Practice
  • Provide a curriculum that is one tailored to an individuals needs
  • Run by an acedemy trust (Charitable trust/not for profit)

Admissions to Special Free Schools will continue to be made via the LEA who retain responsibility for assessing a childs SEN

Important factors…

Applications must only be made by those schools that are new (meaning ones not already funded by the state as already mentioned above)

So… Who can set up a Special Free School?

Well, I should really rephrase the above question to, “Who can apply to set up a Special Free School?” Because the answer is just about anybody can, but this doesn’t mean to say your application will be approved.

This isn’t just a case of knowing that there is a gap in SEN provision (though it helps) groups of parents, charity groups etc,will struggle unless they have a member of their group who has strong knowledge of the education system (basically how to run a school on a senior level) Head teachers and board of governors make a good starting block. From what I have heard, many parent groups have formed wanting to start Special Free Schools but due to their lack of knowledge on the running of a school (including costs) they have therefore fallen at the first hurdle. This isn’t just a case of coming together, forming a group and filling in an application.

Parents/groups/charity groups looking to apply to open Special Free Schools need to do their homework and should realise this isn’t the only option (setting up fully independent schools may be a better, if not slightly easier, process). To set up a Special Free School, groups should appoint a director(s) and as mentioned, preferably someone who has some inside senior knowledge on the running of a school and importantly the likely cost that comes with it.

Writing the bid is also a far from easy task, this normally exceeds a 100 pages and no stone should be left unturned! Only then is there a chance you will make it to the “Interview Stage” The Governement has set up the New Schools Network which is there to help groups throughout the process and should really be your first port of call.
Understandably, given the state of the SEN system at present (the fact that there just aren’t enough special schools in most areas and there are huge gaps in provision) many groups, especially those consisting of parents of children diagnosed with SEN, will be looking into Special Free Schools. However, I feel that when looking more closely, they may well discover things are much more complicated then identifying the need for a school, finding a site and opening one. I’m not saying people assume its easy, just that it seems much harder than I first thought, plus it may not be all its cracked up to be (just read on to see where I’m going with this.)

So, what about existing independent schools? WOuld it be beneficial for them to apply for SFS status? It sounds so considering these will continue to be ran independently yet receive state funding to do so! What’s the catch? Of course like everything there is one!

Special schools that are already setup and established will not be provided with the start-up funding However, there are some exceptions, such as expanding pupil capacity -but there are still no guarantees.

The next big factor is admissions. Once Special Free School status is granted to those independent schools, the LEA will have the right to make them take children with varying needs, even ones the school does not cater for. Therefore this means that independent schools that for example only provide education for children on the autism spectrum, will have to take children with other needs, social, emotional, more complexed SEN or varying disabilities. For me, this is a massive issue, one that would make me consider such a change much more carefully if I was making such a decision about an independent school.

My son is in an independent special school just for children with autism and Asperger’s. The school teaches in small groups and have a high pupil-teacher ratio. I would honestly worry if it was to convert to that of Special Free School status. I’m not being selfish, I just feel that by admitting children outside this status of SEN may result in all children not having their needs met, not mentioning the school reaching over-capacity. I also worry that dependent on how many independent schools within my postcode convert to Special Free School Status, the local LEA may try to move my child in order to save money (his at an independent out-of-borough school).

So… with the bad points out of the way, are there any good ones? The only ones I can actually think of is that of the reduction in tribunal cases. It’s quite simple really…if independent special schools convert to Special Free Schools, then the number of parents bringing cases to the SEN tribunal will fall. LEAs will be much more willing to send a child to the school as it won’t be charging the independent fees it once was. This would also mean that more children would possibly be educated within their borough. For me, neither outweigh the issue of admissions (this for me just creates worry).

Whoever you are, if a Special Free School is something you are seriously considering, there are important issues to consider. One of the biggest is that of the pending SEN reforms. With the future of SEN provision still up in the air, is now the right time to be making such huge decisions? The Green Paper will mean a complete SEN overhaul. This includes the scrapping of the SEN Statement and replacement with the Education, Health and Care plan taking its place. Other factors include everything from the way a child with SEN is assessed, the funding a school will receive and the possibility of a personal budget. We don’t even know what the new EHCP will look like and if the social care part will hold any legal and statutory duty whatsoever.

Can’t this government do one thing at a time? It makes no sense to me to open Special Free schools when the way such children are provided for remains so unclear.

Okay, so heres the nitty gritty on the issue of Special Free School funding:
As far as I can make out, there is no set capital – this is therefore allocated on a project by project basis. The secretary of state must take into account the estimated or “potential” costs of each individual group’s bid. As already stated, there is no start up funding for existing schools, only new schools (special circumstances will be given consideration.)

Do your homework, this is a government-funded scheme which will mean that they want to see low costs and good value for money!
Remember, the government is still consulting on long term funding for special schools. As it stands, the interim funding arrangements put in place is to receive base-funding level funding of £10k per place (note there may be additional funding from some LEAs dependent on an individual’s needs. Well, let’s be honest, 10k isn’t much, especially for a child with complex needs who requires a number of high-level provisions put in place like SLT and OT.

Lastly, Special Free Schools, like other free schools, should receive a standard grant to compensate for services that state maintained schools recive from the LA.

If considering a Special Free School, remember these only cater for children aged 5-19. This is regardless of the pending EHCP, which covers children aged 0-25.

So, there you have it! I hope I didn’t confuse you!

Thanks to Tania  at Special Needs Jungle for asking me to attend the New Schools Network forum which enabled me to write this report. Please visit the New Schools Network for detailed information and advice on Special Free Schools and Free Schools

Claire Louise (A boy With Asperger’s)

I’m up for most inspiring blog in the Mad blog Awards 2012
Please vote for me (A boy with Aspergers) at http://www.the-mads.com/vote.htm

Find me on twitter @clairelouise82

Fantastic week for awards – and some special needs news you can use too!

So, er, I’ll just mention it one more time – Special Needs Jungle WON the CHANGE award in the BritMums Brilliance in Blogging awards last Friday evening. Wowser! I’ve never won anything before – certainly nothing big cheese like this. I spent the first few mornings waking up saying.. I won!.. in an incredulous sort of way. Thanks to BritMums and to everyone who passed on their congratulations.

I’ve been smiling all week – even more so because the day after,  Son1 won the Chairman’s Player of Year award at his football clubs. This is even more fantastic than anything I’ve won because five years ago, he would have spent most the a match sulking on the sidelines and now he’s the most valuable player – all thanks to the fact he’s worked hard at his social skills at his specialist school. Well done Luca!

Anyway, on to the week’s stories. Special Needs Jungle’s had some important posts this week – the first from Charlie Mead, child psychologist about Children in Care. Thanks to all who shared it. And my post on Wednesday  – an open letter to Sarah Teather has had a lot of positive reaction, though nothing, predictably from the recipient herself. But there’s still time, Miss T, to address those issues raised.

Great posts too from Claire Louise at A Boy With Asperger’s and from Kat’s Cafe and Looking for Blue Sky, lovely ladies all. Tomorrow we’ll have Claire’s write up of the free schools event she went to for SNJ. She’s a cracker, our Claire and it was fab to finally meet her at BritMums. We did a lot of cackling. Great also to meet Lyndsay and Gemma who both have fab blogs too.

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

Children in Care in a careless society – Please READ and SHARE!

Today I’m bringing you a post about what I think is the most important issue in our society today – children in care, or “Looked After Children”.

The post is the edited text from a presentation by child psychologist, Charlie Mead at the Towards a Positive Future SEN conference a week ago. He spoke powerfully about the plight of these ‘Looked After Children’ or, as it would appear, not very well looked after children. Charlie works in many children’s homes in the Midlands and South West of England  and if you want to know about how he sees the state of provision of children in care – our most vulnerable members of society – please read on, share it, reblog it, quote it on your own blogs, anything you can do to help highlight it.

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Children are being ignored, abandoned and abused within the care system.  The tension between  available finances and how they are spent is at the cost of children’s development. Children in care are some of the most vulnerable people in this country yet they are given no more priority (in many cases less) than privileged  young people from stable and wealthy backgrounds. They are in denied access to the basic rights of most children. The right to security, protection, opportunity and equality.

Vulnerable – but not eligible

The quote above is from a commissioning officer from a local authority – unable to place a child because they did not meet the criteria of need required to release funds. I will return to definitions later because they are the way that society manages its priorities –

We now have over 73,000 children in care in England and Wales – but we are losing some every day. Sometimes physically – they disappear; but also socially and emotionally. We lose them as potential contributors to society – as ‘net gain adults’ in HMRC speak

The number is an increase of 12 per cent since 2008 and rising since the case of Peter Connolly.

  • 56% of all children in care are there because they were abused or neglected
  • 26% are in children’s homes.
  • That means more than 17,000 are looked after in children’s homes or accommodated in institutions (LA or Private), while the rest are in foster care.
  • More than half of all children in care (53%) leave school with no formal qualifications
  • 13% get 5 A*- C grade GCSEs, compared with 47% of all children.
  • 6% enter higher education.
  • 20% of women who leave care between the ages of 16 and 19 become mothers within a year, compared with just 5% of the total population.

Parents who have been through the care system are twice as likely to lose the right to care for their own children.

I’ve seen cases of 14 year old girls serially sexually abused; criminalised boys; neglected young people; children who were heroin addicts  from birth. But they DO have a voice and they let it be heard – believe me. They know what they want. And it isn’t institutionalised living. They want opportunities to develop relationships to build  their own lives.

So, I am asking why we can’t and won’t protect, educate and cherish children in care as our own? They have already experienced degrees of rejection and loss of control hard for others to imagine, before the system neglects their needs to the point of losing them altogether.

In the area I work these are the most vulnerable groups of children – many do not have a voice of their own and their parents are ignored or dismissed, especially if they have learning difficulties or addictive behaviours of their own. Their social workers are ignored, their care workers are ignored…

They don’t have the “opportunity-language” even if they were to be listened to…..they do not have the leverage. They have become part of the system as soon as the system decides they should be!

All children need: safety; security; health; continuity; routines; knowledge; opportunities; equality.

  • 73 %of school age looked after children have some form of special educational needs – especially social, emotional and behaviour difficulties
  • In the 2009/10 school year, 130 children who had been looked after continuously were permanently excluded from school.
  • 7.9 % of looked after children who were aged 10 or over had been convicted or subject to a final warning or reprimand during the year
  • 4.3 % were identified as having a substance misuse problem during the year 2010.

Why are these simple basic rights not only denied children in care but are routinely flouted by a whole range  of agencies? Even safeguarding issues are ignored if Duty Officers and social workers make wrong decisions based on lack of knowledge – and then D.O decisions are rarely rescinded

For example:

  • The child who is allowed to return to their abusive and neglectful parents because they have made significant progress in care and the money is tight.
  • The child who absconds, arrives home and is left there because there are no Social Workers on duty.

What is it that makes adults lack any sense of what they are doing and abdicate responsibility for the care of children.?

(more…)

Special Needs Jungle a WINNER in BritMums Brilliance in Blogging Awards!

So normally, I have posts about great resources but this post is about me, me, me!

Last night, in London at the BritMums Brilliance in Blogging Awards 2012, Special Needs Jungle won the BiB awards in the ‘Change’ category. The judges said:

“The contents are well focused and relevant. I see this blog being actually a useful communication tool for parents who face such difficult circumstances.”

I’m the blonde in black!

I really wasn’t expecting to win as some of the other finalists looked pretty slick, so I hadn’t thought of anything to say when SNJ was called out.

But suddenly as I was on the stage, I knew what I wanted to say – I asked the hundreds of mum bloggers there last night to try to do something to help all those children who aren’t lucky enough to have dedicated parents like them – namely Looked After Children, or as I’ve been finding out, not-very-well-looked-after-children.

If we all just do one thing, even if it’s just writing a blog post about it, or re-blogging something you’ve seen from this blog (there’s a post coming up on Monday from child psychologist, Charlie Mead that you are welcome to use portions of, or even the whole thing, on your own blogs), then that will be hundreds of one things.

If you’re a bit more ambitious and have more time, you can find out about the situation in your own area and write about that. Bloggers, together, have power and while it’s lovely to write about those things that interest us, whether it’s crafts, music or our own kids, sometimes it’s good to have a call to action to benefit others.

If you’re interested in helping me, whether you’re a blogger or a reader, get in touch at info@specialneedsjungle.com. I’m sure between us we can come up with something!

It was a great evening and if being a winner can highlight special needs a bit, then even better.

There. It wasn’t all about me, after all.

Catch up on some fab Special Needs news and blogs from this week

So, later today I am heading out for the BritMums bloggers conference and awards. As you know, Special Needs Jungle is a finalist in the ‘Change’ category. As something of a niche subject, I’m really not expecting to win – reaching the finals, thanks to all your votes, was such a brilliant feeling to know that you like the blog enough to make the effort to vote and I’m very grateful to everyone who did. If you’re going to the conference, please say hello to me!

Last week’s SEN conference has given me lots of material for posts – and I’m not finished yet. Next week I’ll be bringing you a large chunk of Charlie Mead’s talk about the state of care for Looked after Children. It’s something we should all care about. Also, if you haven’t already seen it, check out my post (below) about when we went to see Temple Grandin speak and my view on the SEN pathfinder so far and why I think the timetable is still too rushed.

Have a great weekend – may the sun peek out on us at some point!

 

Don’t rush SEN reform – get it right, not fast

I’ve just watched the Education Select Committee on SEN – the Next Steps and many of the concerns raised mirror the points I raised in my presentation at the Towards a Positive Future Conference.

Sarah Teather, in her part of the committee, said there will be a ‘slight delay’ in bringing the draft bill until the autumn. This will be followed by a ‘carry-over’ bill in Spring 2013.

But most of the trials are not planned to get started in earnest UNTIL the autumn. So I think the government is still jumping the gun. And I’m not the only one. The experts (yes, Ms Teather, experts) all share my view that legislation should be delayed. You can find the recording of the today Select Committee here. Having listened to Ms Teather, she seems to think the pathfinder trials are a lot further along than they are –  certainly in the SE7 group, to which Surrey belongs.

I’m including a portion of my talk below where I cover both where we’re up to in Surrey with the EHCP and why I think the apparent rush to legislation is foolhardy.

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The SEN Green paper of course, is still being developed. In fact we are only now edging closer to what an EHCP might look like. Who will be writing a child’s EHCP or supporting the parents through it – a so-called key worker –  has still to be decided.

This process is one that is supposed to be informed not just by the professionals and the politicians, but also by the voice of the parents. Parents are part of every pathfinder and every workstream from EHCP to complex needs to early intervention, looked after children and so on..

This is where the parent-carer forums come in. Our Surrey Forum,  Family Voice Surrey, is still quite new. We work with other parents on the committee to represent a strong voice for parents of SEN and disabled children. For the Surrey pathfinder, we are there, putting the parents’ voice forward, as other parent-carers forums do in the other pathfinder areas. We also sit on the high-level Local Change Board, giving us a voice at the very heart of the local authority’s decision-making process for SEN.

Surrey is part of what is called the South East 7,  SE7 group of pathfinder authorities that includes Kent, Medway, East Sussex, West Sussex, Brighton & Hove &  Hampshire

The pathfinders will all test some core elements of reform, including:

  • The single education, health and care plan from birth to 25 years old, focusing on whether outcomes for disabled children and their parents have been improved
  • personal budgets for parents so they can choose which services best suit the needs of their children  although no one will be forced to take control of their own budgets if they feel they can’t or don’t want to.
  • improved commissioning, particularly through links to health reforms – though it has to be said health are, in many areas, reluctant party-goers.
  • and how voluntary and community sector organisations will need to be involved in making the new system work
  • it will also look at the cost of the reform.

Crucially, the new process is also supposed to go from birth up to 25 years old. This is a huge change from the current system where parents of disabled 19 year olds face considerable difficulty in accessing appropriate support or education for them. It’s also anticipated, as I mentioned, that a key worker will support the parents through the process.

Another aspect being worked through is the ‘local offer’ which each LEA will need to draw up to set out to parents whose children do NOT have an EHCP what provision is available for them within the county to support their children’s needs.

It’s aimed at giving parents more information about the services and expertise available locally, for health, education and social care, and increasing their choice. At the moment, we don’t actually know in Surrey what will be in the local offer, it’s still at the development stages.

The principles are for it to be holistic, accessible and easy to understand for parents as well as transparent, sustained and sustainable  –  ie, continually updated – as well as realistic.

As a parent involved in the pathfinder, it can be difficult. After all, you are not experts in every single field. You are, by definition,  informed mainly by the experiences of your family, and other families that you know. This can be a strength and a weakness:  the parent needs to be able to extract from their experience, what is useful to the process and not get bogged down by past injustices in dealings with the LA or present worries about their own child.

You’re there, after all, to represent all parents, carers and most importantly, the often unheard voice of our children. And let’s not forget, some children aren’t lucky enough to have parents and are ‘Looked After’ by the local authority – someone needs to speak for them, too.

The Regional Framework for Parent-Carer Participation says that Parents and Carers are central to, and key partners in, the SE7 Pathfinder activity, which is a learning process for all parties. Sometimes this is hard to believe. Comments I have heard include  “Some parents just want to get a statement to get their child into a good school.” This from the (now former) head of SEN. Or, from another professional, “Some children have too much provision in their statement.” Not to mention that even now, parents still say that their LA case worker seems to feel the money for provision is coming out of their own pocket.

I think one of the most important things that needs to happen and right now, is a cultural change in attitudes to one where parents and LEA are not seen as being on opposite sides. This, I think, may be the most difficult part of the whole process but it is crucial.  There are too many examples to count where parents have been forced to the brink of despair, have just given up or had to remortgage their homes in order to secure the right educational solution for their child.

If the new process doesn’t come with a shift in the entrenched local authority belief that parents are trying to get ‘more than they’re entitled to’ or to ‘game the system’, then any number of new laws will not bring about real change. Let’s not forget  parents don’t go into this process for a laugh. It’s gruelling, it’s exhausting and it’s distressing. Often parents turned down at the first application just give up  and they are often the parents who are most in need of support but who have no knowledge of how to get it, because they find all the information leaflets sent out just too confusing.

So, you’re probably wondering how this new system will work  and key to this is the new Educational Health and Care plan. What will an EHCP look like? For a start, lots of outside commentators seem to be mistaking a single plan for a single assessment. The different assessments will depend on the needs of the child but the idea is to have a single plan that encompasses all the child’s needs from educational, health and social care.

Because it’s such a broad ask, actually designing what the finished Statutory plan should look like is taking some time. In Surrey we have just prepared a second draft of our own, which is shaping into a workable document through lots of feedback from professionals and, I’m delighted to say, our parental contribution has informed its development a great deal.

The plan involves multiple entry and exit points and the plan will be updated as the child develops. This is fine in theory, but many parents will be worried that this contrant review process will end up with their child losing provision and if it’s updated every year regardless, it’s going to cost a lot of money.

The idea is that once an initial problem with a child is raised – at whatever age it is found- then a Multi-Agency meeting is planned with all the relevant services. The main idea is that the parent should only have to tell the child’s story once. I’m not sure, in practice, how practical this will be.

The parent will be able to choose a key worker to support them through the process. After the meeting, it will then be decided whether any action needs to be taken at this point, or if an assessment is required. It’s intended that at any decision point, an appeal can be heard although they do intend to include more of a mediation process. Again, how this will work has not been finalised.

You can see that even at the early stages of drafting, there is no intention just to have one assessment  it just wouldn’t be possible if a child has multiple and complex needs.  After this, it will be decided whether the child’s needs can be met within the local offer or whether an EHCP should be drawn up.  At the forefront of the EHCP is a focus on ‘outcomes’ which will, of course change as the child progresses through this endless cycles of reviews during their education and on until they are 25, if necessary. And at the heart of the process is the child.

On the face of it  a good, holistic idea, but the devil, as we are all finding out, is in the detail. For example, there is the question of who will be writing the final plan. At present, the statement is written by a statement writer whose usual background is a case worker with a few years experience. They like to, so I’m told, sit in isolation in a darkened room writing up a document that will affect the rest of a child’s education. This explains perhaps why most of them are pretty inadequate.

As the idea is to involve the parent and/or keyworker at all stages, this will certainly have to change. The person writing the plan will, in collaboration with the parents & key worker, have to sift through the results of the assessments to find the key needs that need to be provided for. So to me, as a parent, the major people in this whole process, aside from the child, will be the Key worker and the plan writer.

To me, and this is only my opinion, the key worker should be an independent advocate for the child: that is, independent of the LA or the parent, but who also has regard to the parents’ support needs. If this is the case, then negotiation can be made at the plan writing stage to come to an agreed plan so that the need for appeal is minimised- because nothing is finalised until all parties have agreed and all parties are fully involved.

At the moment, a statement writer is supposed to distil the evidence into a statement to fit in with what might be available from the LA. And so when a parent wants an independent special school, further negotiations or an appeal has to take place. And that appeal is usually for parts 2, 3 and 4.

On top of this, I think parents should be encouraged to think about placement at a much earlier stage. Some already do, but other, perhaps less socially mobile parents are left with a statement that the local school can’t possibly hope to meet.

This is where the key worker is a bonus  as a person who, presumably, does this for a living, they will be familiar with the range of provision both in and out of county and will be able to present a shortlist of schools for the parents that is suitable for the child  who, after all is who this whole process is about.

So the plan writer needs some pretty sterling qualities: – someone with a keen analytical mind; compassion; knowledge of education; health and care services, who is also able to work collaboratively. Wow! What a person!

And the Key Worker: This needs to be a person of infinite patience who also has knowledge of education, health and care providers, compassion, independence and an ability to withstand the pressure of the LA and its focus on budgets and the pressure of the parents who may or may not be able to clearly see what is suitable for their child. They also need an awareness of what is available to support parents (they may need a magnifying glass for that!)

This is a vital issue:  parental stress through the needs of a disabled child, can lead to family breakdown, which is counter-productive to the future of the child.  It can also lead to illness of the parent who is then unable to care for the child.

So, I strongly believe that it is impossible to be able to carry out satisfactory pathfinder trials until people of this calibre are identified and recruited, because these are people vital to the process. This does not fit with the government’s stated timetable and it would be a shame to have to cave in to pressure from the government when there is a huge opportunity to reform the SEN system for future generations.

Unfortunately, the coalition government sees the reform process as an unstoppable train that they are pushing through with, on their on timetable, with no regard for the realities of what is happening on the ground.

It’s little short of crazy and they have been told their timetable is unrealistic but, by all accounts, they are NOT listening and so everyone is under extreme pressure to push through a process at break-neck speed that will be in danger of being just as ‘not fit for purpose’ as the one it aims to replace. I think that the government should not rush to legislation. As I have outlined, the trials are yet to begin in earnest  and at this stage in the year with the summer holidays around the corner, look set to be delayed even further.

And yet the government says it aims to use the results of the pathfinders to inform its draft bill this Summer. I’m not sure where they’re planning to get these results from and, with the exception of West Sussex, few families have been registered for the pilots. Surrey for example have ‘identified’ a number of parents for various aspects of the trials, but none have been registered yet for the EHCP, which is the crux of the whole reform. And we are far from alone.

If the government are serious about making a change that will truly benefit children with SEN and disabilities, surely it is better to get it right, than to get it done quickly.

A government spokesman is reported in The Guardian to have said they do not expect to get Royal Assent before 2014 so why the rush this summer? A lot of money is being spent on the pathfinders  even down to catering for all day sessions, hiring meeting rooms, paying attendance and travel expenses.

It is only right that spending, what is taxpayer money, should be rewarded with a system that is sound, reliable, works for families and provides appropriate, lasting educational and social solutions to children with special needs and disabilities.

Inspired: Son2 meets Dr Temple Grandin.

Last night we had the privilege of going to see Dr Temple Grandin, the autistic woman famous for inventing humane animal handling systems. Dr Grandin is also a renowned expert on autism and Son2 was very keen to hear her speak.

So off we went to Reading, but by the time we had arrived and found the Town Hall, Son2 had become overloaded, fallen into intractable silence and could not be persuaded to eat or drink anything. This was not looking good and I wondered if we should just go home. But I had only booked because he had wanted to go and I knew hearing Dr Grandin would be important for him.

Dr Temple Grandin & Son2

Dr Temple Grandin & Son2

There was a while to wait before the show started and I offered Son2 some cash to see if he wanted to get anything in the cafe. Off he set, with me trailing behing him. His eyes alighted outside the auditorium on Dr Grandin signing books. He said nothing and we went down to the cafe where he could find nothing to his liking. Back we came and he slowed down at the book buying table. I asked him if he would like a book and to get it signed. He would.

The queue had diminished and we got the last book. Son2 met Dr Grandin for a brief moment as she signed his name and hers and he went back to his seat clutching his signed copy. He managed a small drink and a bite of his sandwich. I knew that as soon as she started talking he would be transfixed and so he was, for a full hour.

Dr Grandin spoke about how important it was to engage young people with autism, for them to participate through common, shared interests and how to teach them bottom up, not top down. By this she meant using specific examples to teach concepts, to teach the child according to the way he learns. She said it was also particularly important to discover the root cause of a child’s problems, whether it was biological, sensory, fear/anxiety or a hidden medical problem. It was important to give an instruction for the type of behaviour you want, rather than a negative instruction.

Dr Grandin said that much more research needed to be done into sensory issues, which Son2, in particular, is very sensitive to. She also pointed to how so many young people with autism were without basic skills and how fifties-style parenting, emphasising behavioural expectations by way of routine, benefitted young people with an ASD.

Her advice to teenagers with ASDs was that if you find it difficult to interact with people socially, then impress them with what you can do – build up a portfolio of the things you are good at and play to your strengths because talent gets respect. In this way, you can find a place for yourself in society.

Dr Grandin has a new book out, the same one that Son2 has today taken to school. It’s called Different… Not Less: Inspiring Stories of Achievement and Successful Employment from Adults with Autism, Asperger’s, and ADHD.

We didn’t stay for the Question and Answer session after the break – Son2’s attention was exhausted and so was he. But he took a lot from it, I could tell. Dr Grandin is very similar in her thought processes to him and I believe he was inspired and comforted to realise that so many people had come to listen to someone just like him.

Before we left, I asked him if he’d like his picture taken with Dr Grandin – because I knew he would. I explained to Dr Grandin that Son2 now needed to go home but he would really love his picture with her. “We’d better do it right now, then!” she said and Son2 quickly went to stand at her side. It’s not a great quality image, but I know it’s one Son2 will treasure.

On the way home, he was ready to eat his sandwich and have a proper drink. It hadn’t been an easy trip, but I know that he was satisfied and that’s enough for me.

Who will care for our vulnerable ‘Looked After Children’ in a care-less society?

There was a news report this morning about an investigation by MPs finding “serious weaknesses” in England’s care system that showed children’s homes failed to protect runaways.

Children’s Minister Tim Loughton said “urgent steps” would be taken. Much of the criticism by the all-party parliamentary groups on children in care and on runaways and missing people focuses on homes where about 5,000 of the 65,000 of those in care are looked after. The report, first highlighted by BBC Two’s Newsnight programme earlier this month, says the system of residential care is “not fit for purpose” for children who just disappear from the system.

It is very timely that this was mentioned this morning, following the Towards a Positive Future Conference that I spoke at at the weekend. I was going to write about my part in that that today, but it will have to wait because I want to tell you about one of the most disturbing things I have ever heard.

Another speaker at the conference was Child Psychologist and former headteacher, Charlie Mead. Charlie works with children from around 35 homes in the Midlands and the South West. In a talk entitled “The Care-less System” he told of how Looked After Children lose not only their families but also their voices. Many are not in school because schools won’t take them. Charlie said that service heads and agencies are unengaged, denying responsibility for what happens to these, our most vulnerable, young people.

Most have some kind of special need whether it is educational, emotional, social or behavioural. They do not have loving parents to fight for them. Many simply disappear and fall into the hands of drugs runners, sexual exploiters and ultimately, the criminal justice system. All because no one cared about them enough to give them a home, a school place or love of any description.

I will be bringing you Charlie’s speech in more detail in the next week or so, because it is vitally important that you read it. And not just read it, but do something to help these abandoned children who are living among us, invisible and ignored.

It is all our responsibility to help. Why should my children or your children have the best of what we can give them while these children are rejected through no fault of their own?

I really want to highlight this issue and want to call on you all to help me do this too.

The week’s scoop on special needs and disability stories

Today (Friday) is a day full of SEN green paper meetings for the Surrey pathfinder for me and tomorrow it’s the long-awaited Towards a Positive Future SEN conference for which there are still a few bursary places available for parents.

All that’s left is to choose what to wear – and as I’m not very good at this sort of thing, it’ll probably be the most challenging part of the whole thing. Next week I’ll be at the finals for the BritMums Brilliance in Blogging Awards for which Special Needs Jungle is a finalist, so I expect you’ll find me searching the rails at the Posh Dress designer exchange shop in Farnham where they always seem to have the right thing that actually fits me.

Family wise we’ve had a week of CAMHS & cardiology visits for Son2. The consultant paediatrician spent the CAMHS session yawning and answering his phone, but at least the psychologist was sensitive and attentive and we had a satisfactory outcome, although the six month wait left a lot to be desired.

So, on to the week’s stories. Check out, if you haven’t seen it, the Pathological Demand Avoidance article by Deborah Rourke – it’s had hundreds of views this week and is well worth a read. Also have a look at my post about Son2’s raspberry Pi computer. The Padawan has become a Jedi…

Have a great weekend and don’t let the weather spoil it!

SEN child? Join me and NAS president, Jane Asher, on Sat 16 June

So, it’s just a couple of days before the Towards a Positive Future Special Educational Needs conference in Newbury – if you can make it at all, it’ll be well worth the trip.

My presentation is all written and it includes some up to date information on the pathfinder trials for the SEN Green Paper for Surrey. What I’ve found is that those commentators outside the pathfinder really know little about what is actually happening within the workstreams.

Tomorrow, I’m off to a couple of meetings for the Surrey pathfinder, including the latest for the Education, Health & Care plan. We’ll be reviewing a draft plan drawn up by the pathfinder lead, Susie Campbell who has collated lots of feedback from a previous meeting – quite an undertaking and I’m looking forward to seeing what she’s come up with. Our feedback from Family Voice Surrey parent-carer forum was quite comprehensive.

Saturday’s conference still has a few paces left and they can be boked online at http://www.wordswell.co.uk/tapf-conference-2012/booking.php

Among the keynote speakers are:

Clive Rawlings – Barrister – The Coalition Plan for Special Educational Needs: Cohesion or Corrosion?

Charlie Mead – Educational Psychologist – The Careless System

Martyn Sibley – Social Entrepreneur who has one aim ‘To Change the World for Disabled People’

Jane Asher – Actress and President of the National Autistic Society

Delegates can also choose from a range of seminars including OT- Equipping young people with SEN and parents for Life After School; Differentiation in the classroom for children with autism; SLT – the SCAEP multi-sensory social communication skills programme;  Getting Good Social Work Services; Implications of the Green Paper for Children with Dyslexia and Developing Communication Skills for Pupils with Down’s Syndrome.

I’m really looking forward to meeting Debs Aspland, the chair of Kent parent-carer forum, who’s delivering a presentation drawn from her experience as parent of a child with a diagnosis. We’ve built up a friendship via twitter and Facebook and narrowly missed meeting at the Labour SEN policy review meeting a few months ago. Social media is fab for making connections like this, especially as a parent of children with special needs, which can be socially isolating.

So, really hope to see you there if you can make it. And if you do, don’t be shy and make sure you come up and say hello!

Pathological Demand Avoidance – one family’s story

Pathological Demand Syndrome is increasingly being recognised as being on the autistic spectrum. People with PDA will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control. One mum, Deborah Rourke, has written for Special Needs Jungle about her son, who has been diagnosed with PDA and their fight for support. It’s a heart-breaking story. Please share it as widely as you can to raise awareness of PDA.

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From day one, my son suffered from a bloating and stomach pains, which meant for the first two years of his life he only cat napped for a couple of hours at a time; this extreme tiredness felt like torture. When he was almost 10 months old, a doctor suspected he might have Hirschsprung’s diseasewhich led to him under-going a bowel biopsy and a barium x-ray, results of which thankfully were both negative, but the experience had taken its toll and left him suffering further distress.

He was referred to a dietician when he was 26 months old who suggested I put him on a wheat free, gluten free diet. Less wheat did help a little with the bloating; after a while I put him back on a normal diet reducing his wheat intake. My son had terrible outbursts due to frustration and confusion, head banging on floor, biting, hitting, grabbing and hurling anything he could reach.

His speech was poor; by 19 months he had four words and by 24 months it had increased to around eight. His hearing tests were all good. He used to point for things he wanted, or led me by the hand. His speech started to improve slowly from the age of three. He also had difficulties with his gross motor skills (balance, stepping over objects, hoping, running), an occupational assessment put this down to poor gross motor skills and a stiff gait in his left leg. Mother and toddler groups were a nightmare due to his aggression – he was like a whirlwind of destruction which, of course, resulted in complaints from other parents. This continued on into nursery, where he was put on School Action Plus.

Home life became difficult, in so many ways. His sister, four years older, struggled with the constant crying and meltdowns from her brother, other family members struggled to understand and put his behaviour down to terrible 2,3,4’s, some friends stopped seeing us as they didn’t want him playing with their children due to his aggression. Hairline cracks within my marriage grew into a canyon and I struggled to know what to do for the best.

My son was initially diagnosed with speech and language delay. He first attended a mainstream school with a speech and language unit attached, after only one week he had been permanently excluded on grounds of health and safety the other children. Another smaller mainstream school offered to take him, they even helped to get his statement of needs relooked at, and he was given a full-time one to one teaching assistant. However, after almost four weeks and several incidences, the school admitted they were also unable to cope.

Another doctor assessed my son, she recognised that he had autistic tendencies combined with speech disorder. His statement was adjusted to better meet his needs and then began the search for another school. During that time he remained at home.

So many times I was told, “Your son’s not autistic he gives eye contact”. Other times I was asked, “Does that mean your son is really intelligent?” But more difficult to hear was, “He’s just strong willed, a good smack on the bottom will sort him” A local special needs school was found, actually it was a unit attached to an EBD (emotional behaviour disorder) school. With only five children in the class, one teacher and two assistants, I hoped things would work out for him, it certainly looked that way to begin with.

Then the calls started… “Um, it’s your son’s school here, he’s not having a good day; can you come and get him?” This went on and on, not only was this very negative and disruptive for my son, I repeatedly had to take more time off work. I also saw an increase in his meltdowns, and unfortunately the copying from other boys of inappropriate words (such a the F word). A new term, with new staff, resulted in an incident and once again he was excluded.

After an emergency review meeting, which raised areas of failings by the school, we were back to square one. After three separate school exclusions from three different types of schools, I had to give up my job for a third time. He remained at home for eight months whilst being rejected by many schools. The autistic specific schools we viewed didn’t seem suitable, as his autism was mild. Other schools turned him down because he was unable to access the curriculum, and many schools rejected him because of his aggression.

After a CAMHS report, a Meath School private disability assessment, a battle with the County Council SEN department regarding their failings, an Ombudsman investigation, a newspaper article, some campaigns involving letters to my local MP, amongst others, eventually a new school was found, but is ‘out of county’.

Where are we today now that my son is nine years old?… My son has a condition called Pathological Demand Avoidance Syndrome, which is increasingly recognised as part of the autistic spectrum. He is mentally five years old, with Speech Language Communication Disorder and Dyslexic. He is still unable to access the curriculum, struggles to comprehend simple requests, has no concept of time, suffers from IBS and struggles to understand social play.

He currently goes to a special needs boy’s school who have some experience with ASD, EBD, ADHD, ODD etc. But more importantly, they have a flexible manner with an open-minded approach in a nurturing, calm and inclusive environment. To-date, both my son and his school teachers/carers are coping well and learning from each other every day. But it isn’t plain sailing, as his school is in another county and because it’s almost an hours drive away.

There were problems with travelling back and forth daily, so he is currently weekly boarding at the school, the same as the majority of the other boys. There has been much heartache for me, letting go and trusting in others to care for and understand my beautiful boy, although it now helps being able to telephone him every evening. I also worry about the possible increase in his anxiety levels due to separation from the family.

There certainly have been some positives, my daughter is calmer and happier and we have respite time together during the week and it has been lovely to be able to focus 100% on her for the first time in years. Although the children’s father and I have separated, we remain living near each other, have become good friends and he has a wonderful relationship with his children and is fully involved in their lives. We both feel that our son has given us the opportunity to look at life with huge appreciation for the things that many people take for granted.

Our son has been our teacher, we have learned the art of patience, acceptance, to be open-minded, to look closely at ourselves and how to interact in a new way with both our children. My son helped me to realise who I am and what I am capable of; he gave me my voice, he helped me find my inner spirit, strength and passion, and has made me a better person. I am a strong advocate for autism and am in relentless pursuit to raise awareness about PDA.

What can PDA look like…

  • Panic attacks /challenging behaviour:  

Aggressive outbursts, kicking, biting, spitting, hitting, swearing, screaming, throwing things (fight or flight, often with no obvious triggers)

  • Communication abnormalities:  

Echolalic speech, literal understanding of speech, neologisms (using idiosyncratic words instead of conventional speech), language disorder to varying degrees, inappropriate speech for social context

  • Social communication:

Inappropriate play, lack of turn taking and difficulty understanding social rules and requests, difficulties knowing how to react to another person’s behaviour, difficulties accepting that there may be other perspectives, not just a single perspective, limited gesturing

  • Rigid thinking
  • Accumulative levels of stress
  • High anxiety and low self esteem
  • Sensory issues / overstimulation, materials, noise, sunlight, temperature, food

Early History of PDA Elizabeth Newson first began to look at PDA as a specific syndrome in the 1980′s when certain children referred to the Child Development Clinic at Nottingham University appeared to display and share many of the same characteristics. These children had often been referred because they seemed to show many autistic traits but were not typical in their presentation like those with classical autism or Asperger Syndrome because of the child’s imaginative ability, especially in non-echolalic role play; often the child seemed unusually sociable, though in an “odd” way, and language development was atypical of autism and less pragmatically disordered than in Asperger’s syndrome. They had often been labelled as ‘Atypical Autism‘ or Pervasive Developmental Disorder – Not Otherwise Specified. Both of these terms were felt by parents to be unhelpful. She wrote up her findings in several papers based on increasingly larger groups of children. This culminated in a proposal for PDA being recognised as a separate syndrome within the Pervasive Developmental Disorders in 2003 published in the Archives of Diseases in Childhood.

http://www.pdacontact.org.uk/ | http://www.facebook.com/groups/7165353156/  | http://adc.bmj.com/content/88/7/595.full | http://advocate4pda.wordpress.com/2012/02/05/wikipedia-for-pda/  | http://www.youtube.com/watch?v=QwtkzBoY01M

Above is a photo of my wonderful son, and below, a photo taken at the National Autistic Society Spectrum Ball, where Tony Hadley (Spandau Ballet) kindly agreed to have pictures taken to help raise awareness for children with Pathological Demand Avoidance Syndrome.

Food for thought: some great special needs posts and news this week

It feels a bit surreal, being Friday already. Long weekends do that, don’t they? And yet a whole week must have passed because there have been all these great stories. It’s been a great week for thoughtful special needs posts too.

Finally, don’t forget there are still some parent bursary places left for the SEN conference in Newbury next weekend. See the link in the list below. If you come, make sure you say hello!

Floortime for Autism winner!

A couple of weeks ago I featured an article about Floortime therapy for autism. See the post here.

We ran a competition for a free ticket and the winner is: Sarah Selby-Bird. Congrats, and I will forward your email to Jake who can arrange the ticket for you!

Floortime posterThe premise of Floortime is that an adult can help a child expand his circles of communication by meeting him at his developmental level and building on his strengths. Therapy is often incorporated into play activities – on the floor.

Join the workshop on the 23rd or the 24th June at Morris Lecture Theatre, St. Bartholomew Hospital London.   Please visit their website at this link for information on research, pricing, and registration.

I just read this blog post and thought, even though we’re mums, not ‘moms’ that the sentiment is just the same. Hope you enjoy it!

a diary of a mom

Yeah, you

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Dear Friends With Special Needs Kids,

I have something to tell you. And I’m thinking that you don’t hear it enough. So come closer and pay attention, OK? This is important.

YOU ROCK.

Yes, you.

Why are you still looking at everybody else in the room?

I’m talking to YOU.

And no, I don’t mean that you deserve a medal just for parenting your kid. That’s what parents do. We parent. Our kids. So yay, for you cause you stuck around? Hell no.

And I don’t mean to imply that I’m offering sympathy because your path is different – and likely more difficult – than most. It is what it is. And I’m not much for sympathy.

What I do mean is that you rock because of the WAY that you parent your kid. And the WAY that you choose to walk this path.

You rock because…

View original post 824 more words

Jessica Cox: Celebrating Determination

Hope you’re all enjoying the Jubilee holiday.

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

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

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

Jubilee round up of special needs stories!

Me with Sons1 & 2 

Ah, the Jubilee weekend is upon us. We’re having a barbecue with our lovely neighbours, so I hope it doesn’t rain. They’re moving soon – I just hope the new people love walking our dog as much as the Smiths do! I’m going to try to have the weekend off and do no ‘computering’. This may be unpleasant torture though… we shall see. I still have my iPad. Plus it’s my birthday on Wednesday. I’m hoping my kids on half-term will wait on me hand and foot. Well, you can dream!

Have a fab bank holiday weekend, all, and thanks for your continued support for Special Needs Jungle.