Is parental co-production just smoke and mirrors?

Tania writes…

If you’re a regular reader of Special Needs Jungle you will know what big advocates we are of parental co-production when decisions are being made about services for our special needs children.

A booklet all about co-production in the South East SE7 pathfinder, compiled by all parties involved including parents, defines Co-Production as “Co-production is one approach within participation and in SE7 Parent Carer Participation is welcoming parent carers to the strategic decision making process as full partners from the start”

You can download this booklet yourself here.

smoke-mirrorThe reforms are now moving into a second phase in the pathfinder areas where those local authorities and parent carer forums involved are working out how to implement the ideas they have been testing out. At the same time, some of these pathfinders have been named as ‘champions’ and are tasked with guiding the non-pathfinder authorities how to get with the programme.

All along, we’ve said here on SNJ that cultural change is the key to making a success of the reforms. That you could change all the laws you wanted to but nothing would be any different unless the LA staff carrying out the new system fully bought into the new person-centred, outcomes-focused ethos, where the parents’ and the children’s views were central to the process.

The reforms were needed in the first place because of the bruisingly adversarial and expensive practice that had built up over the years where many working in SEN seemed to think that taking on parents and their special needs children was some sort of gladiatorial sport. And ‘was’ is the wrong tense, sadly. It’s still going on all over the country, right now, despite the reforms speeding along faster than a Japanese bullet train.

At one of these ‘champion’ meetings recently, a non-pathfinder LA staff member was heard to remark, “Why can’t parents just be parents and professionals just be professionals?” In other words, we like the system the way it is, with us in charge and the parents in their place.

This viewpoint is not unusual and, I am disturbed to report, it’s not even unusual in the very areas that are leading the reforms. Many of the people who should be leading the new way forward , injecting culture changes with positive enthusiasm, have either never got fully on board or were just pretending to be in favour while quietly hoping they would soon be able to say, “Oh, yes, parental co-production. We tried that last year. We didn’t like it. It took too much time. We’re too busy giving them what we think they should have.”

So, in order for these reforms to make a jot of difference, a rapid and urgent process of ‘re-education’ needs to begin. Actually, it needed to begin at the same time as the reforms began to be developed.

…Most of parents have additional needs themselves..,, the problems we come across regarding health are dealt with in house …there’s no need to bother the parents about stuff like that… [Précis of comment from a senior SEN practitioner at a recent reform conference. Name withheld to save their blushes.]

But who is going to lead this massive undertaking? Who is going to make all these people, many very senior, have a complete change of heart and begin to openly welcome parents at the decision-making table, to value parents’ views as highly as they value their own and those of their ‘professional’ colleagues.

Nothing, I fear, short of the threat of job loss and maybe not even then, is going to do this. These views that parents should only vaguely be seen (preferably from a distance) and definitely not heard are so very deeply entrenched. And if they are still held within pockets of some, if not all, of the pathfinder authorities after 18 months of reform development, how the bloody hell are we going to change them in those authorities who are completely new to the whole idea in the remaining time before Royal Assent?

And how long will it be before having parents at the table becomes tiresome? After all, we know their views, they’re just the opposite to ours, aren’t they?

They are hoping, no doubt, that parents and those fantastic, hard-working LA staff who do believe in this reform (because there are many) will become exhausted, marginalised and may give up, and the role of parents will become minimised and then, non-existent. Again.

I urge the Department for Education and Mr Timpson to take this warning very seriously.

Your reforms are in grave danger of becoming a battleground of dashed hopes and disillusioned and furious parents who have worked so hard, turning up for meeting after meeting, even when so often, half those LA and most of the NHS staff nominated to go didn’t put in an appearance.

Mr Timpson, you must make it your business to oversee a firm policy of ‘change your ways or leave’ for those within SEN up and down the country who think they can just wait it out and go back to business as usual. It’s like giving us a fab new toy but saying you can’t be bothered to get us the right batteries so it works properly.

Taking a firm stance is the ONLY way because the stakes are too high for thousands of parents and vulnerable children whom you profess to want to help.

And I do believe you want to make a difference. I do believe that your department wants to make a difference. But if you do not take speedy and deliberate steps to ensure a change in attitudes of the people who will administer the new system on a daily basis, I fear that it will be back to business as usual with parental co-production becoming a fond but distant memory.

Pupil ranking plans are an epic fail for SEN children

Oh dear.  We’ve always said communication is an issue with the SEN reforms but it’s fairly obvious that it spans education as a whole.

Can someone please let David Laws and Nick Clegg know about the reforms going through and let them have the memo about “promoting inclusion”.

When the Department for Education launched the Green Paper, two of their proposals were to give parents a real choice of a range of schools and give children with statements the right to express a preference for any state-funded mainstream or special school.

However, this morning Mr Laws and Mr Clegg have announced a consultation about plans to change performance measures for schools.

  • Pupils aged 11 would be ranked in 10% ability bands across the year group
  • Test results would be divided into bands of 10%
  • Parents will be told how their child “measures up” to their peers
  • A tougher minimum level of achievement for schools (below which an Ofsted inspection would be triggered
  • This is currently 60% for Sats tests but would rise to 85% under the proposed change

So, let’s just consider this.

  • Would a mainstream school realistically welcome children with SEN if this could risk bringing their minimum level of achievement below 85%?
  • As a parent of a child with SEN, I already know that my child is not achieving at the same rate as their peers.  Will introducing a new measurement help them to do better?
  • How would a young person with (or without) SEN, who has tried to the very best of their ability, feel when they find out that their hard work wasn’t good enough and they were banded in a low percentile?  Will introducing a new measurement help their often already-fragile self-esteem?
  • Is it just a rumour or do all children develop at different rates, based on their age and family dynamics?   Will introducing a new measurement put a stop to that nonsense?
laws

Epic Fail, Mr Laws

Speaking on BBC Radio 4 Today programme, Schools Minister, David Laws said he thinks that levels such as 2a, 3b, “Mean almost nothing to parents,”  

Well, here’s a suggestion, why not just explain to parents what they do mean?  That would be an awful lot cheaper and as a parent of three children, I found out what they meant (and any parent who is interested in their child’s progress will have done the same).  

Therein lies the issue, there will always be parents who are more engaged than others and introducing new methods of measuring children’s achievements won’t encourage parents who are not engaged to suddenly become the type of parent who pushes their child to do better.

Mr Laws also said that the individual score won’t be published nationally and children won’t be told the results, only the school and parents will know.  How does he think parents will find out how their child measures up?  Would that be a letter being sent home via their child’s school bag because we all know that children will never look at them?  Or are we going to put the results online and password protect them – because no child can ever access the information that way, can they?

And parents are not going to discuss it with each other or their friends within ear-shot of the kids? And the kids aren’t going to just ask outright? Or brag if they got a great score within the hearing of less able or SEN children?

This has to be, in our opinion, one of the worst thought-out proposals to have come out of Westminster for quite some time!  Transition to Secondary is an issue for all children, especially those with SEN.  However, the proposals being presented today show a real lack of understanding of children, SEN, parents, schools and inclusion.

If I was to score this proposal, in the manner being proposed, it would definitely be in the 0-10% band.  Mrs Laws and Mrs Clegg, I am sorry to have to tell you that your sons are performing way below their peers (but don’t worry, we won’t tell them if you don’t).

Evaluation of SEND pathfinder report – some nice weekend reading!

senreform2The Children and Families Bill has had a busy week, having a third reading in the House of Commons and then a brief first reading in the House of Lords.

It really would be nice, by the way, if the DfE could provide a little bit better public notice of these events for people who like to follow them.

I watched most of the Commons reading but just haven’t had time to write about it, although many interesting points were raised, particularly by the Labour Education spokesman, Sharon Hodgson and Robert Buckland MP, who has himself worked on many SEND tribunal cases.

If you’d like to watch the reading yourself, you can do so on parliament live TV here

The DfE has now published an “Evaluation of the SEND pathfinder programme” as a nice bit of weekend reading.

This report is the first of two volumes containing the evaluation findings from the first 18 months of the Special Educational Needs and Disabilities (SEND) pathfinder programme.

To recap:

Twenty Pathfinder sites, comprising thirty-one local authority areas were tasked to develop and trial: an integrated assessment process: a single, joined up ‘Education, Health and Care Plan’; and personal budgets across education, social care and health, and adult services as appropriate for children and young people from birth to 25 years.

Debs and I are parents-carer reps for Kent and Surrey respectively, part of the SE7 pathfinder group.

The evaluation’s key findings highlighted that the pathfinders have invested considerable resource to establish new processes including: the assignment of a key worker so that families have a single point of contact; the development of personal profiles through which families and young people can express themselves; adopting person centred planning approaches; and moving to a single EHCP document.

The general feedback around each of these developments has been positive. Pathfinders appear to recognise the advantages of working differently, and are positive about the impact of the changes.

Both the new process and the underlying ethos were seen as important. The changed approaches were reported to have increased choice and control for families. In all cases they were involved in the development of outcomes and agreeing the plan to meet these outcomes. The challenge of a shift to focus on outcomes was clearly demonstrated, with many key workers reporting finding the development of outcome based plans challenging.

It also noted that further workforce development and support for cultural change will be important moving forward. I should coco! Not only important, but absolutely vital and top of the list. And if we’re finding it a challenge in the pathfinders, imagine the job those other councils outside the trails that groups like the SE7 are to mentor are going to face over the coming months.

Still, I have been mightily impressed by the work being done and the positive approach that I’ve seen and I have high hopes still.

Problems remain however and we will have more to say, of course, about our opinions on this.

In the meantime, if you would like to read the report, you can find the page here

I’m now off to my youngest’s GCSE options evening. Really not sure how he got that old so quickly. Or me!

SEN protection to age 25 – unless you go to university

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

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

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

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

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

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

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

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

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

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

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

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

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

Rough Draft SEN Code of Practice published

SEN Reform imageLate yesterday, the DfE published the “Indicative draft Code of Practice” as a “work in progress” to go with the SEN/D provisions in the Children & families bill, now going through parliament.

The DfE describe the Code of Practice thus:

The SEN Code of Practice is statutory guidance that provides practical advice on how to carry out statutory duties to identify, assess and make provision for children and young people’s SEN as set out in the Children and Families Bill (currently before Parliament).

The Code also sets out how legislation and regulations concerning children and young people with disabilities works alongside this.

The DfE says a subsequent draft for formal consultation will be produced later in 2013. After this, a final draft will undergo Parliamentary scrutiny in time for it to come into force alongside the Children and Families legislation.

This Indicative CoP is a sort of rough draft devised from early pathfinder learning and from the consultation that took place when the earlier versions of the C&F bill were published.

Additionally it published ‘Illustrative Regulations” and an “SEN Evidence Pack” pulling together the information that has informed the Bill.

It just isn’t possible to write an in-depth analysis of an 86 page document and two additional publications here in less than 24 hours. We’ll be bringing you that in the course of the next few weeks.

Debs and I will be busy reading over the weekend, as on Monday, we’ve been invited to meet the Minister, Ed Timpson. I also have a few other great ideas to mention then as well. (I bet he can hardly wait)

So far, I’ve got through more than half the Indicative CoP and so here are some initial points:

References to statutory duties 

The text uses the word MUST to refer to a statutory requirement and SHOULD to refer to guidance which is a non-statutory requirement.

It emphasises the need for a fully engaged Health system through Clinical Commissioning Groups and other health bodies.

Clinical Commissioning Groups (CCGs) and, where responsible for children and young people with SEN, the NHS Commissioning Board, will be full partners in the new arrangements for securing the provision to meet these needs.

This is obviously a great idea, but, judging from what I’m reading in the press about the difficulties CCGs are facing before they’ve even fully launched, one can’t help but feel…uneasy at best.

Parental Involvement

Parents/carers figure heavily in the document, particularly in relation to helping for develop services at a strategic level and on a family level about schools fully involving parents when it comes to how their child will be helped.

Some teachers and indeed, many parents, will find this quite difficult for many reasons and this is why culture change on both sides is vital.

The CoP document talks about Parent-Carer forums and the support and remuneration they need to be fully engaged, although it does not detail what this should be.

Schools and colleges need to ensure that they fully engage parents and young people with SEN when drawing up policies that affect them. Pupil forums should always ensure that there is representation from pupils with SEN. Schools and colleges should also take steps to ensure that parents and young people are actively supported in contributing to assessment, planning and review processes.

The knowledge and understanding that parents have about their child is key information that can help teachers and others to meet their child’s needs. Enabling parents to share their knowledge and engage in positive discussion instils confidence that their contribution is valued and acknowledged.

2.2: Person-centred planning 

A key approach that ensures that parents and carers, children and young people are actively placed at the heart of the system is person centred planning. A person centred approach to planning means that planning should start with the individual (not with services), and take account of their wishes and aspirations, and the support they need to be included and involved in their community. It aims to empower parents, children and young people so that they have more control over assessment and decision-making processes. It enables continual listening and learning, focusing on what is important to someone now and in the future, and acting on this in partnership with their family and their friends.

The integrated arrangements for commissioning services for children and young people with SEN must promote the involvement of children and young people, and their parents, carers and representatives in decisions which relate to their care, and in the development and review of a local offer of services, derived from commissioning plans which reflect the strategic participation of local young people and their families. CCGs will want to engage with Healthwatch organisations, patient representative groups, Parent-Carer forums and other local voluntary organisations and community groups to do this.

Really, will they? As far as I can see, health/patient/parent engagement is at a very nascent stage and in many areas, embryonic or not even a twinkle in the eye.

Let’s be hopeful though. If it’s mandated, they’ll have to at least make an effort. Won’t they?

3.2 Keeping provision under review 

Joint commissioning is an on-going process and local authorities and their partner CCGs must keep the arrangements under review.  Local authorities also have a duty to keep under review the special educational provision and social care provision in their areas for children and young people who have SEN .

This will be a full time job for someone. In Surrey, an SEN Quality Assurance officer has been appointed already and so presumably this will be part of the role’s remit.

Two new Health Liaison Posts?

The document talks “Designated Medical Officer for SEN”.  This person might, apparently, be an employee of an organisation such as a CCG or NHS Trust. They will have responsibility for co-ordinating the role of the health body in statutory assessment and MUST work strategically across health, social care and local government.

They must… have good relations with local commissioners who are partners in the joint arrangements for SEN, working to ensure effectiveness in co-operation, and encouraging and supporting the optimum use of flexibilities for joint working (e.g. through partnership arrangements and pooled budgets).

They must provide a means for the local authority to access expert medical advice – for example, on whether or not a child can attend school, or on medical evidence provided in support of a school application – but may also be required to provide or facilitate access to, advice or support for the health community on SEN, particularly when health services are preparing reports on children. Whilst the advice and support may be provided by a number of health and care professionals as appropriate, the designated medical officer must be an identified, qualified and registered medical practitioner, with the appropriate training and/or experience to exercise this role in relation to children and young people with SEN.

The search had better get underway in LAs and CCGs across the land if they’re to stand a hope of finding such a person and training them in the ways of the different authorities they’re supposed to work across.

Social Care Services Liaison person

Another role is a similar function within social care. Social care teams have a range of duties and responsibilities towards children and young people with SEN.

Social care departments may find it useful to designate an officer or officers to support their social care teams in undertaking these duties and to act as the central point of reference for the local authority’s SEN teams on matters related to social care.

Although ‘may find it useful’ may be taken as meaning, sweep it under the carpet, there’s no money in the pot.

Section 4: Local Offer

There is a long section on the Local Offer of services and the document underlines the point that a “Local Offer’ should not be simply a list of existing services but should be used to improve the local offering for children with SEN/D.

The accompanying Regulations document is aimed at providing a common framework for the local offer. They specify the requirements that all local authorities must meet in developing, publishing and reviewing their local offer:

  • The information to be included

  • How the local offer is to be published

  • Who is to be consulted about the local offer

  • How children and young people with SEN and parents will be involved in the preparation and review of the local offer

  • The publication of comments on the local offer and the local authority’s response

There is a lot of information on the proposed Local Offer and SNJ will talk in more details about this in another post but enough to say at this stage that a ‘common framework’ is still not a ‘minimum standard’

5.6 Additional SEN Support

The big question has been what will replace the School Action & School Action + levels of SEN that are being abolished along with the statement.

The answer is here and it’s called  Additional SEN Support

But, to me, it all seems to depend on:

  1. The strength of the school’s SENCO
  2. The training of staff.

It’s fine to say, as the document does, that all teachers should be teachers of children with special educational needs, but we all know that mainstream teachers are trained to be mainstream teachers and a HUGE programme of extra training is going to be needed if there are not structured levels such as exists at the moment.

The document talks about all the tasks that a SENCO should be carrying out, but when my boys were in mainstream, the SENCO (who was great) was also a year head, class teacher, head of PE and Deputy Head.

In my personal opinion, a SENCO should be just that. A SENCO whose sole duty it is to identify, organise, monitor and review the progress of children with an SEN. They should be listening to those children and, where appropriate, organising nurture groups to support those whose support needs may look like a SEN but may, in fact, stem from an unmet emotional or social need.

Additionally, they should be monitoring the quality of SEN provision from the school’s teachers and be liaising regularly with parents (and it does say that in this document).

It’s a full time job all by itself. And they should be part of the school’s senior management team.

Before providing a child or young person with the Additional SEN Support, a rigorous assessment of SEN should be undertaken by the institution using all available evidence/data sources, such as attainment and historical data, the child or young person’s development in comparison to their peers, information from parents and, if relevant, advice from external support services.

How will this be funded? It will be 1. “agreed locally” and be from “the delegated schools budget”, but early on in the select committees they were talking about clawing back the delegated budget. So what’s it to be?

That’s it for now, we’ll have more next week, when we’ve had time to read it in detail.

You can find the DfE main document page here

You can find the Indicative draft Code of Practice here

You can find the Illustrative Regulations draft here

Please do add your opinions in the comments below or on our SNJ LinkedIn group

Co-production is the key to SEN culture change

Tania writes:

Last week I spoke at a top-level conference for council Chief Executives and Leaders from the SE7 – seven local authorities across the south-east of England.

I was there as part of the Surrey pathfinder, to talk about how parent involvement had become integral to the SEN reform process. Parental participation was demanded by the government and in the Surrey pathfinder, it has become much more than just ‘joining in’.

I’d like to share my short speech with you because I know that we, in Surrey and the SE7, are among those leading the way to culture change for everyone involved in special needs & health and social care provision for children and young people.

I’m not saying Surrey has changed yet at the ‘coalface’, but a change is gonna come…

If all this is new to your school, SENCo and local authority, whether you are a parent or practitioner, please read this. As I said in a post the other day, the DfE wants culture change training to start now. But to coin a phrase – if you’re going to HAVE something different, you have to DO something different.

Let me know what your thoughts are in the comments…

***

My name is Tania Tirraoro, co-chair of Family Voice Surrey. I also run a “Times Top 50” website called Special Needs Jungle that aims to help parents whose children have special needs & disabilities.

I started that website as a direct result of the experiences I had of trying to get statements for my own two sons who have Aspergers and other difficulties. It was adversarial, stressful, frustrating, at times emotional – and we had it easier than many, never having to go to tribunal.

In the five years since then, I have heard so many parents describe horrific – and hugely expensive – experiences of battling to get the help their children need. Of quite disgraceful treatment by local authorities, considering that those parents were only asking for support…

I don’t think it’s unfair to say that parents were viewed by professionals as grasping, demanding and, quite frankly, a bloody nuisance – interfering with their jobs ‘delivering’ services to ‘the client’ (in other words, children)

co-production tree

Click to enlarge. Image from http://www.govint.org

Parents have been left at breaking point, bewildered and angry as to why they should have to fight for what you would think anyone would want for any child – the right support provided in a timely manner.

You might look at me and think I’m one of the “sharp elbowed middle-classes” the right-wing press like to sneer at. But that’s not where I came from and I’m in this to help those parents be heard, who don’t even know they’re allowed to have a voice.

So. Here we are. The government decided enough was enough. Things had to change – and what was more, parents were mandated to be a part of it. Imagine that. I can only guess at the gasps of horror from SEN departments across the land.

But, I have to say, and I know Susie [Campbell, Surrey’s Pathfinder Manager] will agree that- in Surrey at least–  the sky did not fall in on County Hall and it’s all working out quite nicely so far.

From a starting point of mutual suspicion that has taken time to overcome, we’ve worked to build up a relationship that has steadily improved – because we wanted it to work.

We now operate what we’re calling co-production – working together as equal partners – this is a revolution in thinking and really, it’s as it should be!

Parents representatives sit on every workstream of the pathfinder and on the Local Change Board.

I have seen guards come down over time and views shared in a measured and respectful way –  but of course it hasn’t all been plain sailing – as in any sphere, it can depend on individual personalities and it’s up to everyone to make sure this is managed.

On the whole, parents have discovered that practitioners don’t have horns and practitioners have discovered that parents have valuable insights that they may not have previously considered. This can only be for the benefit of who this process is all about – the child.

There is still a long way to go with: culture change for many within local authorities and with confidence for parents outside the pathfinder – there’s no magic wand.

But the genie is out of the bottle and when the pathfinder is over, parents aren’t going to away quietly and those with whom I work within Surrey don’t want them to – and neither does the government. We’re already involved in other work for example the Disabilities Expert Group and Gap Analysis for SEN provision.

This is going to be the new normal – But – and this is a big but – it needs to be sustainable.

Parents came into this as hopeful and willing volunteers, but now that the benefits have been realised and we are working as co-producers, local and national government need to look to how they can support the continued involvement of parents as we ALL work together to improve outcomes for children and young people with SEN & disabilities.

***

So – what’s your opinion of the reforms?

And – if you’re in Surrey, see this link for our upcoming conference on the SEN & health changes

Government acts on calls for SEN ‘duty’ for health provision in reforms

senreform3The surprising and extremely welcome news today from the Department for Education (DfE) is that there will, after all, be a legal duty on health providers to deliver the provision detailed in the health part of the Education, Health and Care Plan that’s currently being developed under the SEN reforms.

Clinical Commissioning Groups are GP groups who, under the new health changes, will plan local health services and who will be called on to organise the health requirements of an EHCP, including specialist services such as physiotherapy, and speech and language therapy.

Since the first draft legislation was published for the Children and Families Bill, parents, charities, SEN legal experts and local authorities themselves have been expressing concern that there was no duty on health to provide the services in the EHCPs. There was only a duty to “jointly commission” – the ‘abracadabra approach’ – which everyone knew was never going to be enough.

The government has bowed to this weight of expert opinion and today, in a press statement, the SEN Minister, Edward Timpson said,

“We are putting health at the centre of our reforms in bringing in this legal duty. It is a significant step forward for children and young adults with special educational needs, and I know that many parents will welcome it.

The duty will mean that parents, and children and young adults with complex special educational needs, will get the health services that are right for them.”

Christine Lenehan, Director of the Council for Disabled Children said,

“Many children and young adults with special educational needs depend on health services. I am really pleased that their needs are being taken seriously. This legal duty should help to improve their lives.”

However, Health Minister Dr Dan Poulter said:

“We are determined that children and young people should be put at the heart of the new health and social care system. That is why we and many other organisations with the power to make a difference recently pledged to do everything possible to improve children’s health. This is an example of that pledge becoming a reality.”

disability sDr Poulter is the only one who does not make the specification “with special educational needs”. He instead refers to the recent pledge “Better Health Outcomes for Children and Young People

A quarter of all children with disability do NOT have special educational needs but do have significant health needs. They will not be covered under this announcement under the current way the Children and Families bill is worded.

Views on health from the House of Commons Children & families Bill Committee

In today’s HOC Children & Families Bill committee hearing, Srabani Sen, chief executive of Contact A Family, said that including disabled children has the potential to cost less to provide provision because it will be more coordinated and simplified. She said that this is where working with parent-carer forums is beneficial because by involving parents at a strategic level designing services you end up with better targetted services.

In her evidence, IPSEA chief executive, Jane McConnell acknowledged the work that had gone into bringing about a duty on health as it had been previously said it wouldn’t be possible. However, she went on to say that that although now it seemed there would be an Education & Health plan, if put under scrutiy by the Trades Description Act, the proposed EHCP would fail because there is still not a duty on social care.

Mrs McConnell said that this should not be a big step as social care is administered from within the local authority, so it should not be as big a challenge to achieve. If there is, she said, a single entrance into the plan then there should be a a single path to redress.

Mrs McConnell explained that she had been told that the current Tribunal already has the expertise to oversee all three strands of a plan in a dispute over provision so it should be given the power to do just that. Otherwise, there would be a reliance on parents to go to three different points for redress, which, if it is a single plan, does not make sense.

So, a huge step forward, acknowledged on all sides but:

1. Still no duty on social care

2. Still no inclusion of children with disabilities who do not have special educational needs.

What do you think?

Read about today’s other developments in SEN reform – Pathfinder update and champions named, as well as more views from the HOC Children & Families Bill committee

Children and Families Bill – the missing pieces

senreform2Earlier this month, we shared our Initial Views on the Children and Families Bill.  Since then, we have had chance to look at the Bill in more detail and wanted to share our views and more importantly to discuss “the missing pieces”.

As parents, we know the current system and its failings far too well so we welcomed the introduction of the Green Paper and the excitement of being involved in Pathfinders.  However, the Bill that we have been offered isn’t quite all that we were hoping for.

The reforms offered, “a new approach to special educational needs and disability that makes wide-ranging proposals to respond to the frustrations of children and young people, their families and the professionals who work with them”  and a vision of reforms to, ” improve outcomes for children and young people who are disabled or have SEN, minimise the adversarial nature of the system for families and maximise value for money”.

What we’ve been given in the Children and Families Bill has not quite lived up to the hype.

The good bits:

  • Children, young people and their families are to be true participants in all decisions affecting them
  • A duty for health, social care and education to commission jointly (which theoretically means they will actually speak to each other)
  • Education Health and Care Plans (EHCP) to be available up to the age of 25
  • Academies and Free Schools to have the same SEN requirements as maintained schools
  • Independent Special Schools will be included on the list of schools that parents can request as a placement (although the proviso about ‘efficient use of resources’ is still in there)

What’s missing?

  • Disabled children and young people without SEN.  Despite the Green Paper offering improved outcomes for children and young people who are disabled or have SEN, the Children and Families Bill is only offering the new EHCPs to those with SEN.  This decision shows a real lack of understanding from the DfE about the difficulties that children and young people with “just” a disability (and no SEN) face.  The Children and Families Bill suggests that the needs of these group will be met by the Local Offer.
  • Local Offer – Minimum Standards.  Currently, the DfE are suggesting a “common framework” for the Local Offer.  This could possibly (and will most probably) result in a postcode lottery.  As the Local Offer is being offered as the alternative to EHCPs, there needs to be much clearer legal obligation of minimum standards for Local Authorities.  “Minimum” indicates that something is the very least which could or should happen. “Framework” indicates a skeletal structure designed to support something.
  • There does not appear to be, within the Bill, a “duty to provide” the contents of the Local Offer, just to publish it and that a local authority “may” wish to review it “from time to time”. All a little bit wooly.
  • School Action/School Action +.  There is no mention within the Bill as to how the needs of children currently on SA/SA+ will be met.  Again, if the Local Offer is to be the alternative then this  needs to be much more prescriptive to Local Authorities. The DfE says the replacement structure for the present lower categories of SEN will be defined in the new Code of Practice which is now starting to be drawn up – interestingly by a different team of officials to the one that drafted the bill. Hmmm.
  • No duty on health or social care to provide the services within the EHCP – just an obligation to jointly commission with the local authority. There needs to be an realisation in government that the words “Joint Commissioning” aren’t a new magic spell – a sort of Abracadabra for SEN. Optimistically repeating the “Joint Commissioning” mantra doesn’t mean it’s, as if by magic, just going to happen.
  • No specified time frames from when you apply for an EHCP assessment to when you receive an assessment and more importantly, a EHCP.  Currently, it takes 26 weeks from applying for an Assessment of SEN to actually receiving a Statement of SEN.  This, as a parent, can seem like a lifetime (especially if you only hear about the need for a statement a short time before your child attends school – and yes, this is more common than people like to admit). However, you can see a light at the end of the tunnel with a deadline of 26 weeks.  The new Bill does not provide any defined time scales and this is essential for families. It does say that the regulations may make provision for this – but “may” should really be replaced with “must” as this is a key point.
  • Key worker – throughout the Green Paper, there was mention of a key worker for families.  One person to go to, who would help the families through the jungle but there is no mention of this within the Bill.  This is one of those key features that really excited a lot of families.  The ability to have one person; one person who would repeat your story for you and point you in the right direction to access the support your family needs. This is one aspect of the initial aspirational Green Paper that needs to be clarified – both for families and practitioners. Was this just an absent-minded omission from the Bill or has the DfE decided to quietly sweep this innovative and important role under the carpet? Note to DfE: if it’s the former, someone needs a slapped wrist, if it’s the latter, you’ve been rumbled so put it back in, pronto. Or is this another point for the “regulations”?
  • Time – the current Bill is scheduled for Royal Assent in Spring 2014 (i.e. passed into law) with September 2014 being proposed for when this will come into practice.  How will Local Authorities and PCTs manage to train all the necessary staff in this short time (especially with a 6/7 week school holiday in that time)? Ask any parent and they will say the same: they would far rather wait for another six months so that LAs can get all their recruiting and training in place (not to mention their funding arrangements) than inherit a chaotic mess where no one knows what’s going on, where the money is coming from and half the staff still hanging on to the old adversarial ethos.

While we’re on the subject of culture change, a DfE official did mention to us that he thought re-training to effect culture change should be starting now. I would be really interested to know what funding or provisions or courses there are in existence or planned, to begin this process – which is arguably one of the most important parts of the entire process. Indeed, it might be a little controversial to suggest, but if a root and branch programme of culture change within LA SEN departments had been put into practice to start with, there may have been less need to overhaul the entire system.

The new Children and Families Bill does have the potential to provide children and families with, “A new approach to special educational needs and disability” and to, ” improve outcomes for children and young people who are disabled or have SEN, minimise the adversarial nature of the system for families and maximise value for money” but not without some more thought and considerable tweaking.

Tania & Debs

Special Needs Jungle has a new LinkedIn group!

LIgroupWe have exciting news!

Special Needs Jungle now has a brand new group on LinkedIn. While there are a couple of other SEN groups there, the Special Needs Jungle group is aimed at anyone on LinkedIn involved with 0-25yrs special needs and disability issues in the UK.

This includes health, education, mental health, social care, childhood illness/rare disease & its implications among other issues. And you are welcome whether you are a practitioner , parent/carer or another individual or professional with an involvement in these areas.

We aim to offer a chance to learn from each other by sharing knowledge, experiences, news, best practice and views you may not have previously considered!

There is so much knowledge available from many different sources and we’d like to offer a place for you to contribute your ideas, views, resources and knowledge.

With so many changes on the way in the wider area of special needs, it makes sense for knowledge to be disseminated and shared as widely as possible.

The group is managed by myself and Debs, so you’re sure to have a warm welcome. We’ll be on the look out for great contributions for the SNJ site as well, so don’t be shy in your suggestions!

Join, share, contribute, make yourselves at home!

If you are a LinkedIn user, you can ask to join here

Early Years Development Journals from NCB

NCB-LogoThe NCB (National Children’s Bureau) website has some brilliant free resources for parents, carers and practitioners available for download.

One is the Early Years Development Journal.

“The new Early Years Developmental Journal is designed for families, practitioners and others to use as a way of recording, celebrating and supporting children’s progress. It is also for people who would like to find out more about children’s development in the early years. It supports key working by helping everyone involved with a child to share what they know and discuss how best to work together to support development and learning.

This Journal is particularly useful if you know or suspect that your child or a child who you are helping is unlikely to progress in the same way or at the same rate as other children – whether or not a particular factor or learning difficulty has been identified and given a name.”

Before you start to use the Journal, you should first read the ‘How to Use’ guide, which you can also download.

There are also specific journals for children who are deaf, visually impaired or have Down’s Syndrome on the same page.

Debs says:

“I was introduced to the Developmental Journal for children with a visual impairment by one of our Consultants.  I was asking how my son’s development compared to other children with VI because I didn’t think it was fair to be comparing his development to a sighted child.  Thankfully, our Consultant was Alison Salt (Consultant Paediatrician – Neurodisability) who was one of the people involved in helping to develop the journal for VI children.

The journal became our bible and it went everywhere with me.  We took it to assessments with Alison Salt, his VI play specialist used it to set targets, we used it with his nursery – it was invaluable as it meant we were all working together with the same information.  We were able to see what my son was able to do, what gaps there were in his development and within the journal for children with VI there are also suggestions on activities.

As a mum of a child with visual impairment, I found it really difficult at the beginning to think outside the box – so many ideas for helping a child to develop are vision based.  Look at the majority of children toys, most of them have buttons that light up to tell you that you chose the right option.

The developmental journal was so useful, it gave us ideas, a true assessment, a mutual reference for all involved and more importantly, it gave us hope.  I really cannot recommend this Developmental Journal enough.  It made me informed and therefore I felt like an equal partner.”

There is so much more on the NCB website from information, training and support, Why not bookmark the NCB website to explore as and when you have the time?

SEN Reforms – The Minister visits

Last Friday a groups of parents from parent-carer forums around the country came together at the Department for Education to talk about how parental involvement in the pathfinder reforms had influenced the process, what was working and what wasn’t.

The parents included myself, Debs (who you will recall runs Kent’s forum) and Angela Kelly, my Surrey Family Voice co-chair.

We talked a lot about the value of what is being called the “co-production” of parents’ voices being valued and listened to and how it must continue after the reforms are put into practice, and preferably, mandated in the Children & Families Bill, or new Code of Practice/regulations.

On hand were DfE officials involved in the bill’s progression and yesterday, Edward Timpson, the minister in charge himself travelled to Disability Challengers in Farnham to meet parents and pathfinder families.

Although, very flatteringly, I had been invited to meet him because of Special Needs Jungle, I was already booked to deliver a half-day social media workshop for a room full of noisy and energetic Stella & Dot independent stylists. It was lots of fun, but I was rather hoarse and brain-dead at the end.

Despite sadly missing my chance to speak to the minister, I knew he was in very good hands with Angela being there, along with other parents.

And Ang, being the good egg she is, has written about the visit here. She did say the Minister had a tear in his eye at missing me too, but I think she was smirking when she said it.

Over to Ang…

The SE7 pathfinder team had an important visit on 14th February. SE7 is a collective group of seven south-east local authorities, parent-carer forums and Voluntary and Community sector organisations, who have come together to trial the reforms proposed in the Children & Families Bill.

On a mild Thursday morning, a collective group of professionals, made up of local authority, voluntary and community sector and parents came together at Disability Challengers in Farnham, Surrey to meet with Parliamentary Under Secretary of State, Edward Timpson. (And yes, I have included Parents in the professional capacity because 1, we are professionals where our children are concerned and 2, we are professional in our capacity as co-producers under the new approach to the SEN reform)

Upon my rather unceremonious and flustered arrival, I was greeted by a room full of familiar and  friendly faces. Co-chairs of West Sussex, Hampshire and Kent parent-carer forums had arrived in a much more timely manner than myself, thank goodness and represented parent participation in a very professional manner.

But most importantly there were young people present and a family who are currently at the Statutory Assessment phase under the current SEN system.  Having young people and families involved in such a key meeting is such a step forward and gives a them a voice, it also enables the people who need to understand this message the opportunity to hear how real people are affected by the current system and what needs to change.

The Minister joined everyone in a circular group and was told about the progress being made so far by all trial areas, while Surrey’s pathfinder manager, Susie Campbell followed with Surrey’s progress regarding the single plan. She explained how Surrey had devised their single plan, focused and the child and their family, and how families and young people had been instrumental in this process. Our draft has gone back and forth until a plan was agreed suitable for testing.

I was then asked what my thoughts were on the single plan and I rather gushingly spilled out how I thought co-production was the only way forward and that by children and families having a voice and being at the heart of the process this would create a culture shift and build relationships with parents/carers and all the authorities.

Mr Timpson spoke with a family about their experience of the current system and the openness of the discussion demonstrated that they were being heard and that a change in the way mainstream schools approach SEN and disability was urgently needed.

There was a very limited discussion about Key Working which, while this was due to time, is something that I feel will have to be further addressed  and  when further trials have been carried out this will be  key area (pardon the pun) to ensure the success of the new approach.

Personal budgets and the Local Offer were next and Co chair of West Sussex spoke of their experiences with personal budgets and how this had enhanced their child’s access to services he actually needed rather than accessing services that were available.

Click to see the Tweet Vine Movie of the card

Click to see the Tweet Vine Movie of the card

I think more time needed to have been spent discussing the Local Offer, as there huge concerns over how this will work and how it will  replace the categories of School Action and School Action Plus and inform parents of services that will be able in cross-boundary areas in a clear transparent timely and effective way

Time seemed to be the main constraint with the meeting as there was a lot to present in such a small amount of time, however that Mr Timpson visited to see what is happening in the trials from the mouths of those involved  demonstrates a willingness to listen learn and understand what is happening with the trials and, if I hadn’t mentioned it before, the importance of co-production!

At the end of the session Mr Timpson was  presented with messages from each SE7 parent-carer forum to the Minister. This was innovatively delivered in a hand made Valentines card.

This was well received and Mr Timpson remarked that it was the most creative lobbying he had ever seen, I therefore feel that because of this, the impact of the messages will resonate for longer and have a greater prospect of successfully informing the change to the SEN and disability reform.

Here’s Family Voice Surrey’s message to the Minister:

Message from Family Voice Surrey- Thank you for listening to and including parents/carers views in the publication of the draft legislation.

Our thoughts are that the new bill needs more clarity. This view is shared by ALL parent carers on our steering group. Statutory protection is necessary for those children and young people who have disabilities that may fall outside of the SEN bracket, these children and young people may have very complex health needs but if they have no special/additional educational requirement then currently they will not be eligible for statutory protection under the single plan.

Family Voice Surrey request that you include:

  • Statutory rights for those aged 0- 5 with an EHCP, ensuring swift and timely access to treatment/equipment to aid the delivery of early intervention
  • A mandatory requirement for children with SEN and Disabilities to receive a level of support from their LA that meet the requirements of their EHCP
  • Minimum national standards for the Local Offer – a specified minimum level of provision that Local Authorities will have a duty to provide to children with education, health and/or social care needs who are not eligible for an EHCP

Pathfinder has shaped co-production and parents and carers are working alongside professionals, practitioners and providers in an unprecedented way and it is working.  Policy and local delivery is being shaped in a pioneering way.   This must continue!

Mandatory requirements for co-production are a central part of the EHCP process, together with the delivery of the Local Offer at a strategic level across all services.

Parent/carer forums have a vital role ensuring that parents receive sufficient support and training to undertake co-production effectively. Recognition is needed for the unique role that parent/carer forums will have in this delivery , with adequate resources provided for this work.

Message from Kent PEPs (Kent parent carer forum)

As a forum we were please to see some of the feedback received from parents/carers has influenced some changes in the draft Children & Families bill, and thank you for listening to our views.

We welcome the changes regarding mediation and the fact it will not become compulsory. We are pleased to see the inclusion of Towards Adulthood as a requirement of the Local Offer and an emphasis on strengthening the participation of young peoples.

However there are still some areas where we have concerns:

  • We are concerned about the lack of inclusion for children & young people who have a disability but not SEN and hope your decision to exclude them will be looked at again, in particular to provide statutory protections for Disabled children & young people who have a specific health/social care need but not severe SEN.
  • There is no indication of a duty to respond to a parents request for assessment within a time limit; will this become clearer when the regulations are published?
  • We would appreciate more detail of the single assessment process, Including how the integrated assessment will work in practice; will this become clearer when the regulations are published?
  • With regards to the Local Offer we urge you to support a standard approach for schools to determine some national minimum standards encompassing what parents/carers can expect from schools, clearly laid out so parents can see how these standards work in practice. This should of course include academies & free schools.
  • We support the call for a national literacy and dyslexia strategy, which includes dyslexia trained teacher in every school, which would support the need to ensure early identification (Dyslexia Action’s Dyslexia Still Matters report).

The pathfinder has certainly increased parent participation and closer working relationships between parents/carers and professionals and we would appreciate support for the vital role parent/carer forums have in ensuring effective co-production continues.

Top Tips for Speech and Language Therapy – Part One

As is often the case, I come across great resources and services for children with special needs on Twitter. I then cheekily ask them if they’d like to contribute a guest article for Special Needs Jungle and I’m delighted to say, today and tomorrow, we have a two-part article from two Speech and Language Therapists who run SpeechBlogUK.

Helen & Elizabeth have written their top tips when using Speech and Language Therapy services.

***

Hi.  We’re Helen and Elizabeth from www.speechbloguk.wordpress.com .

SpeechblogWe’re two speech and language therapists living and working in the south-east of England.  We both have experience of being employed by the NHS and working independently.  We’ve recently started our own blog, and we were thrilled when Tania contacted us about writing a guest post for Special Needs Jungle.  Below is some advice about accessing SLT and making the most of your appointments.

Many children have speech and language problems at some point and this number seems to be rising.  If you have concerns about your child’s development, the most sensible thing to do is seek out a referral to a speech and language therapist.  However, as many of you may be aware, sometimes this can be harder than it sounds.

There are a number of places you can get good, sensible information from, both on development and ideas to help at home.

  • Ican: Ican are the children’s communication charity.  They have some brilliant resources and advice.  They also offer a range of services and support.
  • Afasic Again offer support and advice to parents and have a range of services available.
  • Talking point Has some lovely information and developmental checks and information
  • Mommy Speech Therapy: This is an American blog and has some great advice sheets and ideas

WARNING: be a little careful when searching the Internet. As with all things there is also some misleading information out there.  Try to go to known associations and organisations.

Referrals

pigtail_girlThere are a number of ways to get referred to most NHS speech therapy departments.  There may be local variations but generally:-
– Preschoolers can be referred by a GP, nursery, paediatrician, health visitor OR parents.
– School aged referrals can become a little more complicated. Normally referrals have to come from schools or paediatricians and fewer trusts will accept parental referrals (although it’s always worth trying!). You may also find that your child may need to be referred to other education based services first, before they can be referred on to speech therapy.

You can also access independent speech therapy; however, you have to pay! A few health insurance companies will pay for independent initial assessment, but I have yet to find one that will fund ongoing therapy for developmental issues.

In some circumstances, parents can get help towards the fees from Cerebra.  To ensure the therapist you find is appropriately qualified and insured, use the ASLTIP website www.helpwithtalking.com .  This is the association for independent therapists and, to be a member, you have to prove that you are qualified and keep all memberships/ insurances and skills up to date.  Most independent therapists will happily talk about your concerns over the phone and some offer a free brief consultation – so it’s worth ringing around. You are paying so you want to find someone you can work with.

WARNING. Some schools say they have a speech therapist and they don’t. They may have a TA with some training or some of the local authority education workers who support language, but few mainstream schools have a qualified speech therapist.

REMEMBER: you know your child best.  If you have concerns you should follow up on them, even if it’s just reading up a little.  If you are finding it hard to get your child referred, keep going!

Read the second part of this article on Special Needs Jungle tomorrow.

Children and Families Bill – initial views

Finally, the wait is over and the Children and Families Bill, which includes the SEN reforms, has been published. Debs spent yesterday poring over it and here are her initial views:

***

c&fbillimageJust after 10am yesterday, the Children and Families Bill was released and I started to plough through.  Not only did I  have to read this Bill, I  wanted to compare it to the draft Bill published last September, the Select Committee’s pre-scrutiny recommendations from just before Christmas and the numerous responses.

All of this with a child off school with a chest infection and a husband at home who wanted to chat about decorating the bathroom – oh, and no in-house lawyer on hand to help.

The first thing I looked at was whether the Bill strengthened the involvement and rights of the parent and child (or young person)?  Well, you’ll be pleased to know it has.  There is a whole new clause, right at the beginning of Part 3 of the Bill (the part that deals with SEN), which reads:

In exercising a function under this Part in the case of a child or young person, a local authority in England must have regard to the following matters in particular—

(a) the views, wishes and feelings of the child and his or her parent, or the young person;

(b) the importance of the child and his or her parent, or the young person,participating as fully as possible in decisions relating to the exercise of the function concerned;

(c) the importance of the child and his or her parent, or the young person, being provided with the information and support necessary to enable participation in those decisions;

(d) the need to support the child and his or her parent, or the young person, in order to facilitate the development of the child or young person and to help him or her achieve the best possible educational and other outcomes.

As a parent, I am reading this as “Dear  Local Authority, you have to listen to me and my child(ren), and you have to give us the information we need in order for us to have an informed view”.  Now, there are probably 1001 legal-type people shouting at this post and saying the local authority “must have regard to” is not the same as the local authority “must” and yes, I know there is a difference but I am trying to be positive.

Throughout the Bill, clauses have been added or amended to clarify that parents and young people must be involved and their views listened to.  So thank you Mr T, this is a move in the right direction.

Rights & Duties

My second question was to look at whether there was now a duty for health to provide a service.  In the last Bill, there was a lot of criticism that “joint commissioning” was not enough.  In fact the Education Select Committee believed strengthened duties on health services were critical to the success of the legislation

Well, now in the definition of “Special Education Provision” we have:

21 Special educational provision, health care provision and social care provision

(5) Health care provision or social care provision which is made wholly or mainly for the purposes of the education or training of a child or young person is to be treated as special educational provision (instead of health care provision or social care provision).

This doesn’t put a duty on health but the LA do have a duty to secure the special educational provisions.  There is no clarity however, as to which health care provisions this will actually mean and as there is still no duty on health with respect to the provisions within the EHCP, there are no guarantees.

Next, we considered if the new Bill clarified that parents can apply for a EHCP assessment and the answer is yes.

36 Assessment of education, health and care needs

(1)A request for a local authority in England to secure an EHC needs assessment for a child or young person may be made to the authority by the child’s parent, the young person or a person acting on behalf of a school or post-16 institution.

There appears to be no timescales for the LA to respond within the Bill, but we are constantly being told that the “devil will be in the detail” so this, surely, has to be announced in the draft Regulations which are currently being compiled.

So, on to the next question “is mediation still compulsory” (an oxymoron if ever I heard one)?

And the answer is no.  It’s still an option for families who wish to go down this route before Tribunal but no longer compulsory.

What about disabilities?

So, I started to relax a little now but then had a  big reality check.  One huge (or as my son was said “gi-normous”) omission from the new Bill.  Disability.  Or to be more precise, disability without a special educational need.  If your child has a disability and health and social care needs but does not have a special educational need then I’m sorry but you’re not part of the Plan.

Despite several charities protesting and high profile campaigns, it would appear that the Government will not be providing the same opportunities to some of the children who need them the most.

In the DfE’s case for change, it stated “Disabled children and children with SEN tell us that they can feel frustrated by a lack of the right help at school or from other services”.

In the Green Paper, it said “The vision for reform set out in this Green Paper includes wide ranging proposals to improve outcomes for children and young people who are disabled or have SEN” and “This Green Paper is about all the children and young people in this country who are disabled, or identified as having a special educational need

All of the proposals were clearly for disabled children AND children with SEN, not disabled children with SEN.  So, what has happened?  Every Disabled Child Matters has already commented on this and I will be supporting their campaign to give disabled children the same rights as those with SEN.  When they launched the Green Paper, the DfE set out their cart and made us an offer, they clearly said “disabled children and children with SEN”.  We all hoped  that they were really listening to our families and then they changed the rules without explanation.

If you’re interested in what other groups have to say in response to the publication, I’ve listed all I can find here, if you know of others, let us know.

Politics and personalities in the SEN jungle

Like me, my co-contributor, Debs Aspland, grew up in the call-a-spade-a-spade, working class, north-west of England.  Also like me, she has far too much to do trying to juggle work and care for her special needs children to have any time for the politics and game-playing that has so often, in the past, made lives difficult for parents trying to cut their way through the special needs jungle.

In this post, our Debs who, you will remember, is Director of Kent’s parent-carer forum, Kent PEPS, explores the different personalities we meet as parents and individuals in our daily lives and how thinking about this – and your own approach – can help you navigate the system to get the best help for your child.

***

Any change, even a change for the better, is always accompanied by drawbacks and discomforts.

Arnold Bennett

Any change, even a change for the better, is always accompanied by politics and personalities.

Debs Aspland

True co-production with parents is a goal that came out of Aiming High.  The Department for Education allocate a small grant each year to a Parent-Carer Forum within each local authority, with the remit that they work with health, education, social care and other providers to ensure that the services they provide are the services that families want and need.  Fantastic, what a great way forward!

However, the DfE forgot to tell the health, education, social care and other providers that they had to work with the Parent-Carer Forums.

(more…)

Chinese Whispers and Garth’s Uncle

As you may have read on Friday, Special Needs Jungle has a new regular contributor in Debs Aspland, the director of Kent PEPS and parent of three children, all with disabilities. Today is her first post about the essentials of good communication.

Communication:  the imparting or exchanging of information or news

It sounds so easy.  It requires one person (the sender) to give another person (the recipient) a piece of information.  The communication is complete when the person receiving the information understands what the person giving the information has said.  So why is it so difficult?

(more…)

Common sense prevails with more time to test the SEN reform proposals

Minister, Edward Timpson at the Select Committee today

Education Minister, Edward Timpson, has, it seems, listened to the concerns that so many, including Special Needs Jungle, have voiced – that the pace of SEN reform is too fast and more time needs to be given to learn from the pathfinder trials. At the Education SEN select committee on Tuesday, he announced the extension of the Pathfinders for a further 18 months to run through to September 2014. This is six months after the the bill was originally slated to pass into law and I, for one, welcome it. He did, initially, say he still wanted the bill to be passed by the original date, however.

The Minister said, “The overwhelming view is that we are moving in the right direction, but we want to get this right and if that means listening for a little longer, then I am prepared to do that.

In response to concerns from some that the new bill will remove rights that are already existing, Mr Timpson offered assurances that families’ current protections under the existing statementing system are intended to be carried through to the new system. This includes the right to request an assessment, which will also include parents, GPs and Health Visitors. Earlier, parent representatives at the meeting had highlighted the issue that the wording in the current bill did not make it clear that local authorities still had a duty to respond to a request for an assessment within a specified time period. Mr Timpson did not give a clear answer about imposing statutory time scales to ensure that local authorities could not drag out an assessment.

Mr Timpson said, “In no way shape or form is there an intention to water down the protections that parents currently have and if that requires some nuances to the drafting in the clauses that are currently before the committee, then I’m happy to go back and have a closer look at.”

Mr Timpson was at pains to point out that the purpose of the reforms was not to save money  – in fact, he said, spending on SEN had increased from £2.7 billions  in 2004/5 to £5.7 billions in 2012/11

The Minister also said that the Department for Education is working closely with the Department of Health to ensure health play a greater part in a new SEN and disability system. This was in response to concerns that in the draft bill at the moment, only local authorities have a duty to provide the therapies and support specified in a plan.

Regarding the health issue, Sharon Smith of Hampshire Parent Voice, part of the SE7 pathfinder, illustrated it using personal concerns relating to a duty on health to provide the specified therapy and care. She cited her daughter, who has Down’s Syndrome, needing speech and language therapy and if this came under health provision and wasn’t forthcoming, there would be no way to appeal or ask for a judicial review.

Mr Timpson said they will be looking at the NHS mandate and at redress in the NHS constitution, as well as ways to forge links between Joint Strategic Needs Assessments and Health and Wellbeing Boards.

Extension of pathfinders

Mr Timpson explained his decision to extend the pathfinders from March next year to September 2014 saying that in some areas of the trials there was already a grounding of good evidence (not quite sure which ones he means) but in other areas they still need more evidence- for example personal budgets- for the right regulations and a new Code of Practice to be formulated. By Next March, the bill still would not be on the statue books and so they would use that gap to learn from the pathfinders.

When pressed on the question of when the legislation would be introduced if the pathfinders were going to continue until September 2014, the Minister said, “I want to make sure we get legislation right. If that means a short delay in introduction of bill, so be it. But it is the parliamentary authorities who have the final say in what legislation is going to be introduced, when.

Which is very handy, it seems to me.

Mediation

When challenged about the proposal for mediation to be compulsory, the Minister said that there would be no in-built delay as a consequence of there being mediation, in that the two month period in which an appeal can be triggered would not be affected, as they anticipate mediation to take place within the first month. His answer to the question of capacity of mediation services was somewhat confusing, however. It also seems to imply that parents can still appeal in the same two month window as they can now with no delay. This needs further clarification.

Transitioning to the new system & legal status

The parent and service user panel

Questions were raised about how to transition from the current system to the new one for those children who already had statements. Mr Timpson said he wanted to avoid ‘blind panic’ and so the transition needed to be systematically and carefully introduced. He wanted to assure parents that the current elements of their child’s statement would continue in an EHCP with the same legal standing and EHCPs would have the same legal status as statements.  All current rights that parents have, he said, would be protected through the legislation.

Addressing worries that there is only a legal duty for the education part of an EHCP to be delivered, the Minister said that joint commissioning would give a duty to health and social care to cooperate and work with education and parents. I’m not sure I’m convinced about this, myself, and I’m sure many of my colleagues in the pathfinders will feel the same way.

For a transition from a statement to an EHCP, he said there would be obvious points – for example at an annual review or post 16 instead of moving to an LDA they would transition to an EHCP, but Mr Timpson said it was something they would need to think very carefully about. He didn’t think there is a single cut off for all children, but they would use the pathfinders to provide evidence on the best way forward.

With the all-encompassing approach of an EHCP, questions have been raised about what happens if a young person is out of education but still requires input from health and/or social care and Mr Timpson appeared to  indicate that local authorities would have a duty (a legal duty??) to try to get these young people back into education. He acknowledged there were difficulties when a young person was in higher education as they had their own structures but did believe that it was important to bring apprenticeships under the auspices of an EHCP.

Additionally, if a young person takes a year out at, for example 18, they will have a right to ‘reactivate’ an EHCP if they come back into education and if it if decided they no longer meet criteria, they will have the right, themselves, to register an appeal.

There has been talk of redefining Special Educational Needs but the Minister said the current definition was the one that was intended to be carried through, but as it was something they wanted to get right, they would continue to carefully consider the issue.

Terminology in the draft bill has been called into question and Mr Timpson said that the term ‘set out’ was intended to be the same as the existing ‘specify’ and it was not a  way of trying to realign what may or may not be available. Which does beg the question, if that’s what is meant, maybe they should have avoided controversy and said that to start off with.

Code of Practice

With the reforms comes a need for a new SEN Code of Practice and many believe that this should undergo the scrutiny of parliament. Mr Timpson said that he believed a new CoP should be a ‘living organic document’ that is concise and can be updated in a more natural way than going to parliament every time a change needs to be made. However, although he seemed on the one hand to be saying there would not be a consultation, he then said that there would be close involvement from parent-carer forums and a need to make sure they play a part. He did say that he was still listening to views that there should be a different route.

A new Code of Practice, Mr Timpson said, would be a document that parents can easily access and that would be clear what their rights are and what the process is for their child’s journey. It would include information about the EHCP, Local Offer and Personal Budgets but he didn’t want it to be labyrinthine. It must be effective, he said and that was why the pathfinders were important in informing that.

Local Offer

The Minister said that regarding the Local Offer, it was not their intention that it would be a duty for the local authority to provide the content of their local offer. However, he then said a key area that it should address is that on the face of the local offer should be information on how a young person could seek redress if they don’t receive the services laid out in it. I must admit I’m a bit confused here.

In the previous committee hearing, the experts present said they believed that there should be a national framework of minimum standards for a Local Offer. In response, the minister said that what was clear is that they want a Local Offer to genuinely reflect what parents and young people want that is local to them with strong local accountability. He said that there would be, in the new CoP, key areas the Local Offer should cover but he didn’t want to be prescriptive.

He implied that it would be up to parents to confront a local authority if what was available to them was not of the same standard as that in another authority.

In my opinion, the average parent of a special needs child doesn’t have the time or energy to go about researching what is available in other LAs and start demanding it from their own. This is why a national minimum standard is a good idea, Mr T. You cannot expect parents to police the Local Authority and its Local Offer – it isn’t reasonable or fair.

The Minister said a national framework was not currently the intention, but they would give it more consideration and I hope that they do for the very reason I have just given.

Congrats to the parents from Hampshire and the young people who made such good points clearly and concisely in their part of the proceedings. I agreed with the points they made completely and they did a really good job!

You can view the live video feed from the Select Committee on the Parliament UK website.

Common sense solutions to solving dyslexia issues

Last week, while reading my SEN news feeds, I came across an article about dyslexia on the Conservative Home website by education expert, John Bald. John is a former OFTSED inspector and contributor to The Guardian. He has almost forty years’ experience of teaching people of all ages to read and write, to learn foreign languages and to understand and use arithmetic.

I got in touch with John and asked if he would mind setting out his ideas in an article for Special Needs Jungle readers. He very kindly obliged – and I think you will find it extremely interesting reading:

*

Tania’s request seemed simple – she had read a posting dealing with literacy problems on another site, which set out to explain what I described as “the dyslexia racket”. Could I write a straightforward guide for parents on what to do if their child has a problem?

For some issues, the answer is, “Yes”. If the problem concerns literacy, and does not reflect a serious general learning difficulty, bring your son or daughter to see me, and I will fix it for you without charge. This is a big claim, but I deliver on it, time after time, because I know the mental processes involved in reading, and the regular and irregular features of English spelling like the back of my hand. As we read, we use the information contained in letters to do several things at once. We identify words by tracking print closely with our eyes – the latest tracking devices show eye movements following print, as well as changing their fixing point on the page. As we do so put them together into phrases, to reproduce the intonations of the language and reconstruct the sense indicated by the author.

John Bald

The process is a little like reading music. Phonics, the relationship between words and sounds, is at the heart of it, but, unlike musical notation, they are not always reliable, so we have to learn what the letters are telling us in an individual word. For example, the a sound in can has to be stretched to say can’t, and the letters don’t tell us this, any more than they tell us the difference between do and don’t. Once we’ve learned to use what the letters tell us, without supposing that they tell us everything, we understand that the language is a human construct, with human failings, and that it does always respond to strict logic.

As I say to children, English is roughly a thousand years old, and if we were a thousand years old, we’d have a few wrinkles. Much of the difficulty many people experience with reading in English arises because teachers do not know the wrinkles. It’s not their fault – no-one has pointed these out in their training. The reason I came to know them myself was that I did a degree in French, which is the source of over half of the problems. Say table in French and you will hear that l comes before e. It’s phonics, but French phonics. William the Conqueror’s invasion in 1066 left us with a lot more than castles!

How we put words together in phrases and sentences is also a bit like music, and I only understood this last year, when I read the French government’s national curriculum for learning English. It points out that, except for very short words, one part of each word is almost always picked out for stress. Again, the letters won’t tell us what this is – we have to know it, and it is not even the same in words of the same family – photograph, photographer, photography. The last straw for foreign learners is that we pick out one word in each phrase or sentence for extra stress on its own, usually without even knowing that we do it. Controlling these patterns of stress in real time requires very detailed knowledge of the language, and is one reason why so few foreign speakers of English have no detectable accent.

So, if someone comes to me with a reading problem, I explain this and we practise. First, though, I have them read to me, and ask myself two questions:

1. What is it in this person’s thinking that is preventing them from reading?

and

2. How do I help them adjust their thinking so that they can read?

These questions focus my mind on the person I’m working with, and not on some theory – my own or anyone else’s. We need to tune into print, and to help people do this, we need to know the causes of interference. The most common are guessing at words, usually from their first letter, not seeing clearly – some people are sensitive to certain wavelengths of light in a way that only becomes clear when they have to apply their eyes to the tightly disciplined activity of reading – and not hearing clearly, sometimes because of misconceptions developed in early childhood through conditions such as glue ear. Teachers should know all about these things. Alas, most don’t. So, if your child has a problem with literacy, take him or her to someone who does.

I use a similar approach to spelling , Slimmed Down Spelling, but that is for another posting. An account is at http://johnbald.typepad.com/language/2009/06/slimmed-down-spelling-and-government-nonsense.html. I am currently working on maths.

But what if the problem is not with reading, spelling or arithmetic? What if it is a behavioural issue, Asperger’s or Autism? The truth here, I think, is that our knowledge of these issues is not far advanced from that of our general knowledge of science in the seventeenth century. We can see things that we can’t fully explain, and our attempts to solve problems are therefore not fully effective. Even respected scientists such as Simon Baron Cohen resort to blatant speculation, such as his idea that autism is the “extreme male brain” when the evidence runs out.

But I still come back to my two questions, perhaps extended. What is it that is making this person angry, or anti-social? What is it that they need to understand and don’t, and how do we make it clear to them? We know of successful techniques such as social stories to help children focus attention on other people as well as themselves or, more recently, of practising telling the time quickly in order to focus attention on detail. One thing I can say, from extensive experience, is that anger and poor behaviour often arise from children’s frustration at not being able to do their work, and in some extreme cases because of the effect of sensitivity to light that is not identified because no one is looking for it. If the issue that is causing concern is anger, however it is expressed, then if we are to tackle it, we need to move beyond our concern with managing the anger, find out what is causing it, and do what we can to remove the cause.

Find John’s blog and contact details here: http://johnbald.typepad.com/

The lifetime legacy of special needs left by meningitis

I recently met the chief executive of The Meningitis Trust, Sue Davie, and heard her talk about the hidden after-effects that meningitis can leave on children who’ve apparently recovered.  The special needs they have due to acquired brain injury are often missed, but in this guest post, she explains how the illness can leave a long-lasting legacy.

Meningitis strikes fast but its impact lasts a lifetime. It’s a disease that can affect anyone, of any age, however children under five are the highest at risk group. People often think about the mortality rates of meningitis (sadly 10% of people will die) and the physical after-effects of the disease, such as limb loss (where septicaemia has occurred), but what few people understand is that 30-40% of children who survive meningitis will be left with other devastating after-effects. Some of these other after-effects can be hidden and may not become apparent until some years after the meningitis, most commonly causing difficulties at school.

c. Meningitis Trust

At the Meningitis Trust, research we commissioned has provided the scientific evidence to back up what we already knew from the thousands of families we have supported over the years. The research compared children who had survived meningitis with those of the same age who had not had it. Many differences were found, including:

  • Significant deficits across all aspects of memory
  • Poorer executive function – leading to problems with planning and organising
  • 4 times more likely to have mental health issues
  • 5 times more likely to have speech and communication problems

Effectively, as difficult as it is for a parent to hear, their child may well have been left with what is known as an acquired brain injury (ABI) as a result of the meningitis. And there is little or no understanding or even acknowledgment of the impact of ABI on a child’s education. It is like the silent epidemic – inherent damage that may not be seen for years and is an evolving disability. Whenever special education needs are discussed, rarely if ever does it include the needs of those children who “acquired” difficulties.

An excellent publication, “Educating Children with Acquired Brain Injury” by Beth Wicks and Sue Walker highlights why children with ABI have different special needs including::

  • There may be delayed deficits – injury may have been to a part of the brain responsible for skills not required until later in life e.g. a child may appear to be doing well in Primary School, but on transition to Secondary, issues appear as they have problems with their executive function responsible for planning and organising
  • There are often significant discrepancies in ability levels e.g. excellent vocabulary knowledge but lack of organisational skills to formulate expressive language
  • Things that change frequently – they can seem to be learning rapidly at times, other times slow or plateau effect. And they can “grow out” of problems as they recover or compensate for impaired ones
  • They may score OK on conventional tests of intelligence as they have retained previous learning (meaning they are at age-equivalent level), but they gradually fall behind as new learning is impaired

As the impact of meningitis and ABI generally is not understood by those responsible for identifying need, it’s not a surprise that it goes unsupported:

  • As it is often an evolving issue, it does not fit standard SEN systems
  • It is usually complex (i.e. many different facets to it), frequently leading to some individual components being identified but in isolation
  • The cause of the issues may have been years before (e.g. meningitis as a baby) so it is not connected and therefore the root cause not considered (ABI)
  • Generally, teacher training in special educational needs is poor and does not include training on ABI and its impact
  • And the people responsible for assessing children, the Educational Psychologists, have very little understanding and expertise in ABI – and yet they are advising schools.

Alongside families, schools are the major providers of rehabilitation for children with ABI and yet the system that is in place lacks the knowledge of what has happened, its impact and how best to meet individual needs.

A report called “Missing Out” was produced in 2001 by the Childrens’ Acquired Brain Injury interest Group. A number of recommendations were made including around ABI awareness and education amongst teachers and educational psychologists. 11 years on and nothing has really changed.

The Meningitis Trust exists to support people affected by meningitis and we are now fighting on behalf of all the children who have survived meningitis to get them the educational support they deserve. Alex, one of our Young Ambassadors who was 8 when he contracted meningitis said “I thought being in a wheelchair was the hardest part – but I was so wrong. I found myself struggling with work that I could do before with my eyes shut” and he also said “It was not my fault I had meningitis – I still deserve an education”. You can read his story at this link in his own words.

And for parents it is a heartbreaking battle – this is what two mums said:

  • “None of the professionals who came to the meeting about my son had any knowledge of meningitis or the after-effects. I felt like he was just set up to fail. They say education is inclusive ….. not for children who have had meningitis”
  • “Throughout my son’s school life, he was forced to fail before he could get any help and his self-confidence was left in tatters – if it had been an obvious physical disability he may have got the help he needed”.

Meningitis may be considered a “rare” disease but there are over 20,000 children in the school system who have had meningitis and as many as 40% of these may be struggling. But ABI can be caused by many things and if you consider that every year there are over 500,000 children under 16 in the UK admitted to hospital for head injury, and more than 10% of children can have illnesses that can cause ABI (including meningitis) – it means the number of children potentially struggling in education without the support they need because of an ABI is huge. But the system continues to fail them because the impact is not understood – and that cannot be acceptable.

Children who have had meningitis have already had to fight for their lives – they should not now have to fight for their future. Support our campaign today – just go to www.meningitis-trust.org to sign our petition and see how you can help children like Alex.

Footnote:

Knowing the signs and symptoms can help to save lives and I urge you to ensure you have this knowledge close to hand. You can download our free meningitis app at  www.meningitisapp.co.uk, go to our website  or call our 24 hour freephone helpline (0808 80 10 388) and get a free credit card sized symptoms card. Why don’t you order some for everyone you know, your school/nursery etc. Remember, anyone at any age can get meningitis so everyone needs to remain vigilant. Having our information close to hand saves lives – we know because many people tell us.

If you have been affected by meningitis, you do not need to suffer alone, The Meningitis Trust helps people to move forward, providing free emotional, practical and financial support – just call us on 0808 80 10 388, email us at support@meningitis-trust.org or go to our website www.meningitis-trust.org. Or why not join our Facebook or Twitter

Cracking special needs stories for the Easter weekend

Happy Easter! Why not spend a few minutes this long weekend to catch up on some of the past week’s special needs and disability stories?

Here’s my pick:

Got one of your own not listed? Why not add it in the comments…

SEN Conference and launch coming up in Newbury in October

A two-day conference is being held for parents and professionals concerned with special educational needs is being held in Newbury, Berkshire on 14th and 15th October 2011. The conference, entitled “Towards a Positive Future”  is aimed at parents and professionals, to inspire, share experiences and discover how they can achieve more for children with special needs. The conference is being held on October 14-15 at Arlington Arts Centre, Newbury and has been organised by practitioners Wordswell and social entrepreneur Robert Ashton.

It will herald the launch of a new foundation that will enable practitioners to join together to provide multi-disciplinary specialist services for children with special educational needs. It’s hoped the Clarity Foundation could transform the present fragmented and bureaucratic system. The Foundation hopes to attract health and social care providers, as well as education specialists, to join as members who can be referred to families and local authorities as approved providers meeting statutory guidelines.

The foundation is the brainchild of speech and language therapist Janet O’Keefe and Robert Ashton, best selling business author, social entrepreneur and campaigner, who are passionate about providing a new joined-up efficient system which supports children and their families with educational support, while at the same time eliminating unnecessary duplication and bureaucracy.
There are currently 1.7 million children with special educational needs in England who require support for wide ranging conditions, from dyslexia, dyspraxia and Down’s syndrome, to autism and attention deficit hyperactivity disorder.
Janet says: “We believe that having a one-stop shop is the best way to enable parents and local authorities find all the support services desperately needed by children with special needs, and that our foundation is the most practical and efficient way of ensuring that those services are integrated and coordinated. We need to bring practitioners from health, education and social care together and plan for the future while the present guidelines for new contract arrangements is under review. Our foundation will be a valuable database of all heath and social care providers, as well as education specialists.
“Additionally, we can streamline time consuming and expensive administrative processes. For example, we can help with criminal bureau checks and professional indemnity insurance. At the moment, if a practitioner is not directly employed by a school or local authority, every school they visit should conduct its own CRB check. Many practitioners regularly visit 20 schools a week sometimes in several different counties and are therefore checked 20 times.”
Robert says it makes good sense to become more efficient during the present shake up of these services:
He says: “However you feel about the Government’s “Big Society” agenda, the fact is that the worlds of education, health and social care are undergoing massive change. The Clarity Foundation is being formed to help parents make sense of those changes, and in parallel to help practitioners create their own enterprises. That way both groups can connect, create opportunities and meet the needs of young people striving to overcome disadvantage.”
Specialist speakers include educational psychologist and former head teacher Charlie Mead, who has worked with children with severe emotional and behavioural problems and special needs for 20 years and Kevin Geeson, CEO of Dyslexia Action, who will highlight the impact of the SEN Green Paper.
Janet is also launching a book she has edited at the conference also called Towards a Positive Future which includes stories, ideas and inspiration from children with special educational needs, their families and professionals.
Full details about the conference can be found at their website, Towards a Positive Future: http://towardsapositivefuture.wordpress.com/

Great Expectations – Educational Support campaign from NAS

This post is reproduced with kind permission from the National Autistic Society

Half of all children with autism wait over a year for appropriate educational support, and over a quarter have waited more than two years, finds a new report by The National Autistic Society, published today.

The report launches our Great Expectations campaign on Special Education Needs (SEN), which aims to inform and influence the Government’s proposed overhaul of the SEN system.

Children should expect an education that sets them up for life, yet our research, with over 1,000 parents of children with autism and young people with autism themselves, found that far too many children with autism are not getting the education they need and deserve. Our research found:

  • just half of parents (52%) feel their child is making good educational progress
  • 30% of parents feel that their child’s educational placement is not adequate
  • 43% of young people feel teachers don’t know enough about autism.

This whole experience has been utterly destructive for the family. An ongoing, uphill daily battle, trying to help a child who is becoming increasingly socially isolated.
Parent of a child with autism

Parents should expect an education system that works with, not against, them, but too many parents have to fight the system to make it work.

  • 7 out of 10 parents say it has not been easy to get the educational support their child needs.
  • 47% of parents say their child’s special educational needs were not picked up in a timely way.
  • 48% of parents say they have waited over a year to get the right support for their child, and 27% have waited more than two years.
  • 18% of parents have had to take legal action to get the right support for their children, and have been to tribunal an average of 3.5 times each.

Stop picking on meParents told us that while they waited and fought for the right support, their child’s educational progress (70%), mental health (60%), behaviour (68%) and self-esteem all suffered enormously.

It’s really hard to go to school. People don’t understand how hard it is. They judge me for doing things I can’t help.
Young person with autism

Mark Lever, NAS Chief Executive, says: “We have Great Expectations that the necessary changes to the education system can, and will, be made. It is completely unacceptable that so many parents are still fighting a daily battle for their fundamental right to get an education for their child.

“The Government rightly recognises that action is needed, and that they need to reform a system which continues to let many children with autism down.

“Our report sets out the practical, often simple, steps that the Government can take to create a system that works for everyone. The proposed ‘biggest SEN reform in 30 years’, will shape the future of a generation of children with autism. Let’s get it right.”

Our campaign will be launched in Parliament this evening at a reception expected to attract around 80 MPs, including the Disability Minister, Maria Miller and Shadow Education Secretary, Andy Burnham.

We need your help

You can support our Great Expectations campaign by emailing your MP to ask them to raise these issues in parliament. To find out more about the campaign, and other ways you can get involved, visit our campaign homepage.

Our key recommendations

An education that sets children up for life and a system that works with, not against, parents.

Children with autism expect:

  • to get the support they need quickly and easily, regardless of whether they have a statement or EHCP
  • teachers who understand how to support them and who have easy access to autism specialists for help.

Parents of children with autism expect:

  • to have robust, simple ways to challenge the system if their child doesn’t get the support they need
  • local authorities to have a thorough understanding of the needs of children with autism in their area, and to plan provision accordingly
  • to be equal partners in the system and genuinely involved in decisions about their child’s education and the planning of local services
  • local information that empowers them to make the right decisions for their child.

Illustration - let's work togetherWe expect the Government to listen and to act.

Let’s work together. Let’s get it right.

To read the full report please visit www.autism.org.uk/greatexpectations

Child-Free.. as free as the wind blows..

This morning, without so much as a backwards glance, both our boys climbed on board a coach with their classmates and set off for their annual trip to PGL. For us, this means no children in the house for the next four days. We still have the dog of course, but he doesn’t put up a fight at bedtime or complain that dinner is ‘disgusting’.

At the same time as feeling ever-so-slighly elated, our hearts do go out to those brave teachers venturing forth with fifty boys aged between 7 and 11, all with some type of special need. These range from dyslexia, to speech difficulties to Asperger’s Syndrome. The teachers know only too well what puzzled faces could ensue with the saying, ‘It’s raining cats and dogs’.

Far from being tough little tykes, practically all these boys have in their backpacks their cuddly toys, blankets or other comforter, even the big strapping ones like my 11 year old. He has his old cotton cellular cot blanket, a stuffed reindeer and two stuffed Club Penguin plushies, all shoved down into his rucksack along with his tuck for the trip.

Our boys went on the trip last year and then, there were  a few tears from my youngest before he set off, but as soon as he was on the coach, he was smiling again. I shed more tears on the way home at the thought of them being away from me on a school holiday for the first time. When they returned, I was going through Son1’s bag and there was a suspicious amount of clean underwear, an untouched toothbrush and a still-neatly folded flannel. It turned out that he hadn’t washed, cleaned his teeth or changed his pants for the whole four days.

Despite this squalour, he still managed to bag himself a posh girlfriend at the end of trip disco. She rang him so often afterwards that I heard him say to her, “Can you not ring me so often, it’s getting a bit annoying.” Oh dearie me, he has a lot to learn.. but then he was only 10 at the time.

This year Son2 is determined to grab himself a girl as well. He has carefully chosen himself a pink linen shirt from Zara and refused to get his hair cut so it’s nice and long and trendy. However, after his success last year, Son1 is uber-confident that the prep school fillies will be throwing themselves at his feet again. He’s offered his brother a few pointers, but let’s hope his tips on personal hygiene aren’t among them..

Mother Needs Help For Self-Harming Son

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

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

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

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

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

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

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

Government Supports Autism Bill (UK)

The Government has, for the first time, declared its support for what could be England’s first Autism Bill. The National Autistic Society (NAS) celebrated the move as a vital development for people with autism as Care Services Minister Phil Hope committed to enshrining in law a raft of new measures, via the Autism Bill, which could drive a dramatic improvement in local authority and NHS services for people with the condition

On 13th May, MPs voted yes to the Government’s proposed blueprint and time scales to improve support and in a major development the Care Services Minister gave the forthcoming national adult autism strategy extra force by adding it to the Autism Bill. The Bill now awaits its third reading, scheduled for 19th June, and with the support of the Government is likely to pass to the House of Lords.

Mark Lever, chief executive of the NAS said; “We are absolutely delighted that the Government is prepared to take decisive action to tackle the shocking lack of help which leaves people affected by autism feeling isolated, ignored and often at breaking point. The Autism Bill has passed a major and crucial hurdle on the road to becoming law but there’s still some way to go. Autism is a serious, lifelong and disabling condition, and without the right support it can have a profound and sometimes devastating effect on individuals and families, so we will keep working with the Government to ensure the Autism Bill can deliver where it is really needed.”

The Autism Bill is being championed through Parliament as a Private Member’s Bill led by Conservative MP Cheryl Gillan and was drafted by the NAS on behalf of a coalition of 15 other autism charities. She said; “I commend the Government on their commitment to transforming the lives of children and adults with autism via the support of Schools and Learners Minister, Sarah McCarthy-Fry and Care Services Minister, Phil Hope. Today is a real turning point for the thousands of people affected by autism who have been unable to get the help they desperately need and I look forward to working with the Government to make this vitally important Bill a reality.”

The Government’s measures come as our I Exist campaign found that at least 1 in 3 adults with autism are experiencing serious mental health difficulties due to a lack of help. Under the Autism Bill, the national adult autism strategy, due at the end of this year, will hold local authorities and NHS services legally responsible for providing support for adults with the condition and ensure they have clear routes to diagnosis, assessment and support. The NAS is urging as many people affected by autism as possible to take part in the consultation for the strategy which closes on the 15th September.

This boost for adults with autism builds on a previous commitment by Sarah McCarthy-Fry MP to fulfil the Autism Bill’s original demands for better support for children via new regulations for Children and Young Peoples Plans. In an important win for the wider disabled community, these would legally require local authorities to collate and share data and information on children with disabilities with other agencies, which could see a huge sea change in disabled children’s services and ensure they get the support they need to fulfil their potential in adulthood.

Source: National Autistic Society

Read more on this subject

Celebrate Calm – well worth signing up for.

I am taking the liberty of quoting from an email newsletter I subscribe to ‘Celebrate Calm, written by Kirk Martin. It is about his son who, like many of our children, marches to the beat of his own drum:

“The following message is very personal and my wife never likes me sharing it, but it seems to strike a chord with people and provide helpful perspective. I wrote this about Casey several years ago–for those who have met him at the workshops, you know that Casey is no longer a little boy (except at heart)!

I look at other people’s kids who are compliant, excel in school and are sailing through childhood. And I really like those kids, I do. At one point, I wanted a child like that and wished I had an easy kid at home. But now? I wrote the following one night after peeking in at my son sleeping. I encourage you to do the same. I hope you will discover some common feelings toward your child.

The Beat of a Different Drummer
I peek in at him late at night lying in bed, fast asleep, my no-longer-little guy sprawled out across his bed, long unruly mess of hair covering his face. . .and I smile. I smile because he is full of personality. He is so different than me in many ways, different than my expectations, different than the little boy I had always imagined. And for that I am grateful. He’s his own person, knows what he likes and doesn’t like. I look in at him, peaceful and innocent while he sleeps. The fight is gone and his little mind is resting. He’s gone full force for the last sixteen hours, he needs a break.

I like it that he pushes the limits, like it that he questions everything, because one day he’s going to do something spectacular. Along the way, he’s going to make some big mistakes, but he’s going to live large and dream large. Underneath the spunk and mouth is a heart not only lined with gold, but filled with it. It is large and feeling, and it wants to do good even when his impulses lead him astray at times.

I think God must look down and confuse him with a little tornado. But I also think God looks down and likes what He has created, likes the little tornado who is growing into a man.

I think He sees Himself in my little boy, funny as that sounds. The part of God who is the Creator, who by the sheer force of His energy and being created life and all that is in the world. The part of God who was willing to step into humanity and persevere on a rugged cross because it would help people. The part of God who walked among men, largely misunderstood, often reviled because He was different and didn’t do things the way the rulers of His era thought they should be done.

But He kept going. Because He, too, had a mission. He didn’t care what others thought. His vision was larger than a mere thirty-three years on earth.

I think God must see Himself in the part that sometimes misses out on earthly things because he’s in tune with something deep inside another person. The part who remains an idealist even when the world around him is less than ideal. The part that isn’t afraid to look into eternity and see better things in all of us.

That is my son sleeping there. We fought each other until we couldn’t fight anymore. Until I realized that I was the one who needed to change, because I wasn’t going to change his nature. Perhaps he has been given to me so that I would change.

That is my son. Sometimes he inspires anger, sometimes frustration. Then he makes me laugh, even smile in resignation. And as I look at him, he makes me cry. He is a wonderful creation. Through all the struggles, I can see the imprints of the Creator.

He is my son. He marches to the beat of a different drummer. Thank God.”

I hope he won’t mind me republishing this but these emails have always been very helpful to me and are well worth signing up for. He also has a range of self-help CDs, and is US based. Find him here: http://www.celebratecalm.com/

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.

It’s all about the school.

Yesterday, my son was discharged from regular check ups with his nurse practitioner at his specialist clinic, a cause for celebration. She has been a wonderful support to us along the way to getting the best we can for him but now he has started at an appropriate school for his needs, he no longer needs medication to help him focus because there are only nine boys in a class and he is taught in the way he learns best (imagine!).

His nurse said there’s nothing she can now offer that he isn’t getting at school and she’s right; it’s all about the school. A paediatrician at the centre said the same thing: one size doesn’t fit all and the right school can make the difference between a life of underachievement and a fighting chance of success.

What chance does an ASD child, even with TA support, have in a class of thirty (several of whom probably have behavioural difficulties or other issues) when that child has sensory integration problems and needs a quiet environment to be able to put pen to paper at all? What chance for success does a bright child have who reads several years ahead of his age but can barely write, when he’s left to fester in a remedial English group where he refuses to work because he feels his intelligence is being insulted?

This is the conundrum faced by mainstream schools when trying to educate children with complex needs. It’s just not possible to put him in a group with his intellectual peers because he thinks so differently and can’t keep up with writing speed. But putting him in a group with children who write as slowly as he does means he’s frustrated and not challenged. The same is true for many bright dyslexic children; where do you put them if they’re clever enough to be in the ‘top’ stream, but whose reading or writing difficulties mean they can’t present their work as well or whose thought processes don’t follow ‘the norm’?

Can mainstream provide sufficient expertise and support for these children? Politicians pushing the ‘inclusive’ agenda say it is perfectly possible and perhaps in a very few schools that have sufficient specialist staff and resources, this may be the case but for the majority, it just isn’t.

I was told when my son was in mainstream that there were five accepted methods for doing maths at his level. My son had his own, sixth, very complicated method and even though he would get the right answer, I was told he had to conform to one of the methods laid out in the national curriculum. Good luck with that, I thought, because you’ll have a job on your hands.

I have spoken to many highly experienced teachers, special needs Teaching Assistants, Outreach staff and Clinicians in the past few years. NOT A SINGLE ONE believes inclusion for children with complex learning styles or difficulties in the answer. Not one. Why are their views being ignored in the relentless push for everyone to be taught in one setting? Please, if you know, make a comment and enlighten me. It’s possible that I and they are all misguided souls. But somehow, I don’t think so.