NAS petition – Single point of appeal for EHC Plans

The NAS has launched a petition calling on the Government to amend the Children and Families Bill to create a single point of appeal for challenging provision in Education, Health and Care Plans.snj joined upThis change is essential if the Government are to deliver on their commitment to “ending the agonising battle many parents fight to get the support for their families, as they are forced to go from pillar to post between different authorities and agencies”.The NAS welcomes the replacement of education-only statements with joint Education, Health and Care Plans. However as currently drafted the Bill does not provide a joined up system of accountability and redress. Parents will have to go through separate appeals processes for each element of an Education, Health and Care Plan to challenge inadequate provision. They will continue to battle the system on multiple fronts.

Parents tell the NAS that social care and health complaints procedures are difficult to navigate, can take months and sometimes years to resolve disputes and are unable to offer the robust remedies currently provided by the First Tier Tribunals in relation to education statements. The solution is to enable the First Tier Tribunal to hear appeals and offer remedies for all elements of Education, Health and Care plans. Despite debates on amendments to this effect during the Commons stages of the Bill, the Government has resisted this change, claiming existing routes of redress for health and social care are sufficient. This flies in the face of parent’s own experience and the Government’s own ambition to create a joined up and family-centred SEN system.

Time is running out for the Government to deliver on their promise to end parent’s battle for support. The Children and Families Bill is expected to pass into law in early 2014. It is vital that the changes are made during the remaining stages of the Bill on the House of Lords. Take action today by signing their petition.

Please note the SEN changes introduced in the Children and Families Bill will only apply to England.

For more information please contact policy@nas.org.uk

 SNJ are supporting this petition.  The Children and Families Bill is supposed to make life less complicated for parents and having three appeals systems is in no way, by any possible definition, less complicated.  Nor is it line with the “joint” approach that the whole reform system is supposed to be about.
Sign now and show your support.

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.

Special Educational Needs Reforms – sorry, what?

You know us, we talk about the reforms to SEN currently going through parliament. A lot.

It’s important stuff and if done properly, will revolutionise the experience of future generations of SEN children. And parents – i.e., you and us, are fully (in some areas) involved with the process.

pushchair[Cue screeching of Mclaren Major and wheelchair tyres…]

We’e sorry, what? What the heck are we talking about? You know, the SEN reforms! You know almost nothing? No way!

Yes way… And how do we know this? Because we ran a survey to find out. And not only was knowledge about the reforms much lower than it should be, but almost three-quarters of people answering were worried that the changes would mean their child would end up worse off, losing provision.

The results are in, and it would appear that the DfE and local authorities need to seriously address the issue of communication.

  • 90% of respondents were parents, the other 10% were either practitioners (7%) or parents who are also practitioners (3%).
  • 66% have a child who currently has a statement and 19% had children on School Action or School Action +
  • Of those who had a statement, 15% had to go to SEND tribunal to either get a statement or to get a statement fit for purpose.
  • 174 people responded to our survey (thank you). Of these respondents, 61% lived in Pathfinder areas. Our highest responses came from SE and NW England.

surveygraphic1One finding that we probably didn’t need a survey to find out is that the cost of a Tribunal is high – both emotionally and financially. Especially when LAs often insist on purchasing extremely costly external legal representation. This is one of the reasons why parents welcomed the aspirational Green Paper way back in 2011.

So why, then, do only 10% of our respondents believe the Government is doing the right thing with the proposed changes and 45% of respondents believe this is not the right thing? Some replies:

The government is working on the incorrect assumption that all schools care about SEN students”

Rushing the Bill through before the Pathfinders have done their work is wrong”

The new Bill does absolutely nothing to address the problem of inadequate resources or how to make LAs accountable”

Question: Is the Local Authority you live or work in a Pathfinder?

This was a real eye opener. Almost half – 48% – of all respondents did not know. Even more shocking, 41% of those who were in Pathfinder areas didn’t know and 4% said they were not. So within Pathfinder areas, 45% of respondents did not know that their LA was a Pathfinder.

Question: Have you been involved in developing the SEN reforms in your area?

6% of all respondents had been involved extensively (this was slightly higher at 9% in Pathfinder areas). However, 67% of all respondents had received no information from their LA (via any method) about the SEN reforms, this was only slightly lower at 59% for those who lived or worked in Pathfinder areas.

  • 50% of all respondents knew very little or nothing at all about the SEN reforms – and this was the same in Pathfinder areas which is really concerning.
  • 72% are concerned that their child will lose provision under the proposed changes.
  • Only 8% are convinced that children and young people will have the same legal rights
  • Only 31% know where to go to find more information, 41% do not know where to find it within their own LA.

I am shocked as to the number of teachers and parents who know nothing about this, especially SENCOs”

surveygraphic2The Local Offer

71% of respondents knew nothing, or very little, about the Local Offer – this was only slightly lower in Pathfinder area (66%).

We asked what people thought the Local Offer was and overwhelmingly, parents believed it was either just related to Short Breaks or cash related. Some responses:

Set amount of money per child with SEN”

An amount of cash held by the council for people with SEN within their area to be allocated as they see fit”

This is to do with Short Breaks, like we had under Aiming High – what short breaks are on offer locally

Only three people responded with any real accuracy: “A web based “mind map” of the journeys families take and how to access help along the line“. Several people still presume there will be a resource directory – which was met with ridicule based on past experiences.

  • 71% did not know who would be able to access the Local Offer (67% in Pathfinder areas)
  • 42% were engaged with their local Parent Carer Forum (but many commented that they would now be contacting them to find out more)
  • 53% knew nothing (or very little) about the proposed EHCPs
  • Only 8% think the School-Based Category (to replace School Action/School Action+) is a good idea, but 51% admitted that they did not know enough to make an informed decision
  • 66% knew little or nothing about the offer of Personal Budgets (this was 67% in Pathfinder areas)
  • Over 50% were unsure about whether Personal Budgets were a good or bad idea.

I think the idea is really good but there MUST be good LOCAL support for families, provided by people who know the area – not a national box-ticking company”

surveygraphic3Keyworkers

In the Green Paper, there was lots of mentions of Keyworkers for families and families were all delighted. However, once the draft Bill arrived along with the draft Code of Practice, Keyworkers became a good idea but not essential. We asked if families should be given the option of a Keyworker to support them through the process and should this offer be a requirement, rather than a recommendation and 76% said yes. In Pathfinder areas, this rose to 81% – and that speaks for itself.

We asked people to give general comments throughout the survey and I have chosen my particular favourite.

“What needed to change was LA/LEA/School accountability to parents and children so they delivered what they were supposed to deliver. The law in itself was good – it was just the power to enforce pre-tribunal that was weak”

It wasn’t a huge survey but still, there is much to be taken from it regarding the views and level of awareness of parents. Some of the changes were needed (e.g. education to 25, not having to wait 26 weeks for a statement) but the biggest change needed is culture change and the proposed Bill does nothing to address this (even if Mr Timpson has spoken of its importance). If it ain’t in the Bill, it means nothing.

So we would like to ask HOW will the DfE and Local Authorities ensure that parents, children and young people are involved and informed? This Bill is travelling fast so time is limited; they need to take action now.

Congratulations to the 5 winners of the e-book version of Tania’s “Special Educational Needs, Getting Started with Statements.” Emails with single use codes to download your book from Smashwords ebook hub will be landing in your inbox in the next few days.

Pie Charts: Marco Tirraoro (Financial Modeller & Business Partner Extraordinaire)

Summer’s here: Where are we in the SEN reform process?

Tania writes

Well, good question.

The answer is we’re here, there, everywhere and nowhere, depending on which county you live in.

cdc_timpsonjuly2013As the long summer break approaches (and enjoy it while it lasts as Mr Gove has it under his microscope – though I can think of better places for his microscope) let’s take a look at where we’re up to.

This is an easy exercise, as Ed Timpson, the Minister in charge, who certainly seems to be a very genuine and well-intentioned person, has written today to the Council for Disabled Children with his own round-up of the broad facts.

You can download the letter for yourself here but to summarise:
  • The Children & Families Bill has now completed the House of Commons stages of the Children and Families Bill and has just completed second reading in the House of Lords. Ed Timpson said, “I have very much welcomed the engagement of many sector and parent-carer organisations in the careful scrutiny of the Bill clauses. The debates in the Bill Committee and in the House were rightly challenging but also constructive.”
  • The CDC has worked with the DfE and produced a leaflet explaining in more detail the reforms to the SEN funding system. The leaflet explains clearly that the funding changes do not change the legal responsibilities of schools and local authorities for children with special educational needs.
  • The indicative Code of Practice has been published and a full consultation will begin in the autumn.
  • CDC and DfE have been discussing the arrangements for reviewing Education, Health and Care Plans, especially the reports parents and young people receive about annual review meetings and the year 9 transition reviews.

As we develop the Code of Practice, it will be important to write it in a way that supports a real improvement in outcomes for those with SEN in schools and colleges in order to meet the Department’s wider aims to improve attainment and close the gap. Ed Timpson MP, Education Minister.

  • The DfE is now thinking more widely about implementing the reforms, and how to manage the changeover to a new legal system from September 2014. It is not proposed to move wholesale to the new system from September next year; rather it will be the beginning of a period of gradual and orderly transition to full implementation.
  • The pathfinder champions are now holding their first regional meetings to support non-pathfinder areas, and have recently shared core learning points through a series of information packs, which can be found here
  • The DfE will be providing £9m in 2013-14 to support local areas to prepare for implementation.
  • Evidence from pathfinder experience and evaluation reports have emphasised the value of early engagement with parents and parent carer forums. (Hurrah!)
  • The DfE will be publishing more information in early autumn to continue to support implementation.
  • Additionally, not mentioned in the letter, the 20 pathfinder areas have all developed or are still developing their own versions of an EHCP and Local Offer, Personal Budgets, Transition plans and so on. Lots of money spent, lots of work carried out and quite a number of minds changed on both parent and practitioner sides about one another.

All very nice (or as my SEN barrister friend Gulshanah, would say sweetly and with a ton of barely-detectable cynicism, ‘That’s lovely, isn’t it?’

Recently, SNJ published two posts raising concerns in the bill, none of which seem to have been addressed so far. You can read the posts here and here to see the issues that remain. The letter doesn’t answer these questions, with the exception of the Annual Review question which is under further consideration. To make for easier reading, we’ve combined them into one easy to download PDF

senreformmontageWe do hope that these problems and omissions will be tackled in the autumn as the next parliamentary stages are started, as Mr Timpson says himself, “I am aware that there will still be some areas that you and others in the SEN and disability sector will want to see evolve further as we start the next Parliamentary stages in autumn. lt is very much the right time to raise these points so that we can continue the constructive dialogue between the Department and the sector.”

We, and we hope, you too, will be continuing to work as much as possible on influencing the bill through the channels that we are part of. It is so important to stress that everyone concerned with the bill has an opportunity to make their voice heard. For parents, this is most likely to be through their local parent-carer forum.

For parents who have SEN children,the upcoming consultation of the Code of Practice will be a huge opportunity to have your say. This is where the rules and regulations will be written and if your child doesn’t have a statement/EHCP, this is even more important. Read the draft – you don’t have to do it in one go, take the whole summer to comb through it and make notes.

Your voice may be the one that makes the difference. It’s easy to complain when you don’t like something, much harder to do something about it so if you are in a position to, do make your voice heard.

Later this week we will be publishing the results of our survey into how much SEN/D parents and carers know about the SEN reforms. They make for startling reading. As a taster:

  • 40% of respondents in Pathfinder authorities did not know if their area was a pathfinder or not.
  • 60% of those in Pathfinder areas had heard nothing about the Pathfinder
  • Just over 50% do not feel they know enough to say if the school-based category is a better idea than School Action/School Action Plus

We need as many parents and carers to be as informed as possible, whether or not they can be or want to be involved. Local authorities, schools, colleges, children’s centres need to do a better job of funnelling information through to parents about the reforms and about their local (voluntary and over-stretched) parent-carer forums.

There’s no space to tell you how to do that, though as an experienced charity PR, I have plenty of ideas. I would hope every Local Authority’s Comms Department do too!

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

Debs writes...

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

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

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

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

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

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

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

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

 

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

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

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

Working with parents as partners – a practitioner’s top tips

Debs writes…

The Children and Families Bill, currently working its way through parliament is very big on practitioners in education, health and social care working in partnership with parents – or “co-production”.

Now, this is clearly a fine goal, but it is going to require a shift in attitudes on all sides and an extensive programme of re-training in some quarters as well. For some, it will be easier than for others and there are already examples of great practice that need to be identified and held up as examples for others to learn from.

If you search the web, you will find several parent views on co-production but we thought it would be useful to get the views from a practitioner (we used to call them professionals, but then, what does that make us?) about the challenges, issues and positives of co-production.

Phil Brayshaw

Phil Brayshaw

Phil Brayshaw is a registered nurse for people with learning disabilities and has post-graduate qualifications in child mental health and family therapy. He has worked in health and social care for over twenty years and until recently, was the lead commissioner for disabled children and young people for NHS Calderdale. Phil also led Calderdale’s SEND Pathfinder work before moving to NHS England in April 2013.

We thought he was an ideal person to ask about co-production from the ‘other side’.

****

I was really chuffed to be invited to write about working alongside parents from a practitioner’s perspective. As an NHS employee however, I’ve been asked to say that my ‘top tips’ reflect my own views and not necessarily those of either NHS England or NHS Calderdale.

Writing a guest post is new to me, as co-production is to so many of us, and I had a few false starts but I persevered – and that is the key to trying anything new. So, here are my ‘top five’ points to remember.

If you have any questions, leave a comment and I will do my best to answer.

1.     Don’t be afraid to try new things and if they are tough…KEEP GOING!

Co-production is about more than not doing the same things that we have always done, but doing new things together. It’s about talking to each other and working together to find brand new ways of doing things. Doing things differently can be tough, but don’t give up – after all it is better to write a dozen opening lines than none at all.

2.      Be clear about what you want or what you want to achieve

Having meaningful conversations is so much easier if we are all talking about the same thing. People often talk about shared goals and ASPIRATIONS, but these are not always easy to agree on or describe. My advice is to always start with the end in sight. You could try asking, “What would success look like?” In Calderdale, we found the best answers to this question come from children and young people themselves.

3)      Get a sense of what other people need to ACHIEVE and help them achieve it.

Shared aspirations and goals are essential to co-production. There is little point in working together if we are not all heading in the same direction. That said there are often a number of different priorities for families, communities and the various organisations. It can be useful to understand what other people need to achieve, within their families or professional roles.  Helping someone to achieve their objectives often frees up some of their time to help you meet yours.

4)      Learn to TRUST – be open and honest.

If we are going to work together we need to learn to trust each other. In my experience people generally want what is best for children and young people. Believe it or not professionals don’t come to work just to make your lives more difficult [honestly] and parents aren’t unreasonable and difficult on purpose! There is no question that the current system is adversarial and there is little wonder that we are all a little suspicious of each other. Trust will take some time and effort.

5)      Ask for help (and act on advice)

It is okay not to know all of the answers and it is equally okay to ask for help. We are all very LUCKY to have such a wealth of experience around us – in families, communities and services – we need to get much better at using it; And whether you are in a family, community or a service, it is important to remember – it isn’t always the professionals that have all the answers or solutions.

So, SNJ friends, would you like to hear more from Phil?  What would you like him to write about?  We would love to hear your thoughts on this post.  As Phil said, he is happy to respond to any comments and questions below.

You can also contact him directly via Linkedin or @PhilipBrayshaw on Twitter.

Parent Carer Forums

Debs writes….

Tania and I are both co-chairs of Parent Carer Forums and we do mention them quite a lot.

Tania Co-Chairs Family Voice Surrey with the lovely Angela.  Angela shared her experience of meeting Mr T with us on Valentine’s Day.

I KentPEPsLogo92dpiRGB_web2Co-Chair Kent PEPs with the fab Sarah, who knows when to reign me in and also is one of the most organised people I know.  Sarah will be the person who has printed everything off before our meeting and the one who replies to emails quickly.

What is a Parent Carer Forum?

A parent carer forum is a group made up of parents and carers of disabled children who work with local authorities, education, health services and other providers to make sure the services they plan and deliver really meet the needs of disabled children and families.

The forum represents the views of parents in the local area but does not advocate for individual families. There is usually a steering group of parents who lead this and listen to the views of other parents in the local area to make sure they know what is important to them. Forums are keen to make contact with as many parent carers as possible.

In England there are now forums in almost all local areas.

Who can join a parent carer forum?

Forums are ‘pan disability’ which means that parents or carers of a child with any type of additional need or disability are welcome to join – as they are likely to need to access services and support. Joining your forum does not mean you have to commit lots of time. In most forums you can join and receive information, and you then decide if you want to get more involved at your own pace.

Taken from Contact a Family website 

We are all part of a National Network of Parent Carer Forums (NNPCF) which is  a network of parent carer forums  across England. It too has a steering group made up of parent carer representatives from across England.  NNPCF make sure that parent carer forums are aware of what is happening nationally, and that the voice of parent carers is fed from local parent carer forums into national developments, working with the Department for Education, the Department of Health, and other partners.

Contact a Family support the work of the National Network of Parent Carer forums and offer us relevant training and a variety of conferences and regional meetings.

If you would like to find out if you have a local Parent Carer Forum, then we have added a page to our site with their details for you.

If you are a member of a Parent Carer Forum steering group, we also have a group on Facebook which you are welcome to join.

Gcontactetting involved with your local Parent Carer Forum is such a great way to have a say and really help to influence decisions made about services in your area.  Most of the forums are always looking for new members to participate so get in touch.

Special Needs Jungle meet SEN Minister, Edward Timpson

So the big day arrived and of course, it was raining. Tania and I headed into London, to the Department for Education, to meet the Education Minister in charge of the SEN reforms, Ed Timpson.

Unfortunately, there was ‘the wrong kind of ice’ on the conductor rail and  so I sat at Waterloo for half an hour while Tania updated, “At Wimbledon and moving”, “Now at Clapham”, all the time watching the clock.

Eventually we arrived, and the lovely Jon arrived to escort us up to Mr T’s office.  While we waited for the Minister to finish another meeting, Jon introduced us to some mums who blog about their own special needs children and who’d come along via Tots100 – one all the way from South Wales and another from up in Manchester. Hats off to them for making the effort!

We received a very warm welcome from Mr T, who didn’t look at all daunted by the prospect of meeting several passionate SEN mums.  Then again, perhaps he missed his vocation in life and an Oscar could have been his for the taking if he had chosen a different career route.

snj-ET

Debs (left), Mr Timpson, Tania

The mums gathered had children with varying difficulties and were at different stages of the process of trying to secure support, but the main thrust was of the outrage and distress parents felt when they were forced to fight for what their disabled children needed.

The Minster asked us to share with him one thing we would change or we considered an issue.

The one thing that was very noticeable was the amount of nodding heads from all of us as each person relayed their concerns or suggestions – it was very clear that as parents, we all know our children and we’ve all had similar experiences and issues.  The solutions we suggested were all similar too.

I felt a genuine sadness that the bad bits – the bits  you think only happen to you or in your area – were  happening to many others across the whole of the country

Parents often feel they are not an integral part of any decisions made about their child – often they are talked at, rather than talked to.  The whole process can become, and often is,  adversarial, with parents feeling that it is often just a case of the LA showing us who is in charge.  As parents we want to engage and play a role in our child’s life but legislation alone won’t make this happen.

Aside from Tania & myself who, as you know, are involved in our own areas developing plans for SEN reform as part of the pathfinder, one mum was taking part with her family in the trials themselves (and we’re looking forward to hearing more about it from her soon) while others were less knowledgeable about the stage the reforms are at. I suspect that may soon change!

It was telling that most had felt a lack of support and signposting but there were several mums who could point to excellent help they had had and we think this could be developed into “Beacons of Good Practice” that the government could highlight as examples to other areas who may not be doing so well. What a great incentive, to have your service win such an accolade!

Tania & I raised our concerns about the massive task of culture change needed to drive forward the Children and Families Bill and to ensure it meets the outcomes it was initially designed to produce, but more positively, we also tried to offer some solutions to that and will be sharing our ideas and contacts.

Key working (and a named key worker) were the one thing we all agreed with.  Parents want to have the confidence that practitioners within different agencies (and sometimes practitioners within the same team) will actually speak to each other. As that doesn’t happen at present and there are not clear signs that it will be happening anytime in the near future, there was also the recognition that parents need someone who is just there to help them (independent advocates), someone who knows the system and the resources available, someone who can be your guide through the local offer.

charlie

Charlie Mead

Another point your intrepid SNJ advocates raised was the huge potential for “nurture groups” to create a backbone of support for vulnerable and troubled children within schools.  Children sometimes present with what appears to be an SEN, but this can be exacerbated by unmet emotional or social needs.

When given the right support through this type of group, can then integrate back into universal services.  Tania talked about the great work that child psychologist, Charlie Mead, has done with the use of nurture groups in a previous post – Special Needs Jungle in the Telegraph – what I really think and we hope that Charlie will be able to share his experience with Mr Timpson, who was extremely interested in the concept. If commitment and funding for nurture groups can be mandated or at least added to the Code of Practice, this could be a real way to help families and children succeed.

Generally, the meeting was very positive.  Mr T did appear to listen to what we were saying and he was very keen to stress that the Code of Practice was an “indicative” draft, which will be informed by the findings from the pathfinders and SEND pathfinder partners.

desperatedanHowever, as parents who don’t often get to bend the ear of “The Man That Can”, this was our chance to indicate to Mr T and his trusty team that the indicative draft is at present rougher than Desperate Dan’s chin.

We will be working with other parents and practitioners to try to influence plugging the gaps and, in fact, Tania is attending a Code of Practice workshop next week.

We were given the contact details for the Minister’s team and asked to let him know of anything that was working well and were all told to “keep blogging”.

We can promise him, and everyone else, that we most certainly will.

Draft SEN Code of Practice: Further views

Debs writes….

As the Indicative Code of Practice was published, I was in Guildford delivering Early Support’s Key Working in Practice capacity building training.  I was lucky to have ten amazing ladies attend, all of whom understood the benefits of key working and working in partnership and wanted to see this working in their own areas.  I walked away from the training feeling really positive about what the future could look like.

After a long journey home – does the M25 ever NOT have roadworks? – I sat down and started to wade through the new draft CoP and regulations.

Edward Timpson - junior minister in the Department for EducationI was initially hooked by the line in 2.1 Introduction (A Family Centred System) “Parents know their child best” and I would like to thank Mr T for getting this line into print – it was long over due.  We don’t always claim to be an expert in our child’s diagnosis; we merely claim to be an expert in our child.

However, as I progressed through the new documentation, I started to feel a tad unsure.  It sort of feels as if “this is the goal” but there is no detail on what steps will need to be taken to reach that goal, nor does it feel as if there is any real understanding of the huge culture (and operational) changes the LA & PCT staff and families are facing.

2.3 Parent Partnership Services

“These services should be available to all parents of children and young people with SEN”.  Now, before any PPS staff reading this start shouting at their PC or phone, I happen to be a fan of Parent Partnership Services, I think they offer a great deal of support to families.  However, in several areas the PPS have seen huge cuts.  In Kent, we lost almost 50% of our service last year (while hearing rumours of increases in the tribunal staff – a really inspiring message for parents).

Cuts in a service offering SEN information, advice and support to parents, at a time when the new legislation is raising so many questions and concerns for families, is just nonsensical (and perhaps even disrespectful to the families who need this support).  How will PPS be able to ensure their services are available to ALL parents of children and young people with SEN with a reduced workforce?

In some areas, the PPS currently offer the Disagreement Resolution Service but the new COP states clearly, with regard to this service, that local authorities “should ensure that the service is impartial and it must be independent of the LA”.  Not all PPS are independent, even if , in theory, they operate at arms-length.  This is not a criticism of PPS, but a criticism of LA officers who just cannot understand that in order for a PPS to be truly effective and deliver the service that families need, they need to let go!  However, this  comes down to Politics and Personalities instead of achieving the outcomes for children, young people and their families

2.4 Parent Carer Forums:

“Local authorities and other service providers should work in partnership with parent carer forums”.  This is where “should” and not “must” comes in to play.  The COP says effective parent participation happens when the engagement of parent-carers is valued, planned and resourced – but doesn’t clarify how this should happen.   It states in 2.4 that PCFs should be involved in the preparation and review of the Local Offer but in section 4. The Local Offer, there is no mention of the forums, nor are they mentioned in the regulations regarding the local offer.   There is the “must involve parents, children and young people” line, but this will allow the LA to cherry-pick the parents who they know and trust not to challenge them and that won’t help some families.

5.1 Improving outcomes for all

“All children and young people SHOULD have an appropriate education” not MUST have.  “All education settings SHOULD have high aspirations for all children and young people” not MUST have.  It would be nice to see the bar raised slightly here.  However, I fear this will not be the case when you see in 5.8 Best Endeavours that educational settings must use “their best endeavours” to make the special educational provision called for”.

“Using their ‘best endeavours’ means that within the resources available to them these bodies must do their best to meet a child or young person’s SEN”

Seriously?  We went from “Support and aspiration: ……. wide-ranging proposals to respond to the frustrations of children and young people, their families and the professionals who work with them” to “do their best”?  Hardly aspirational when one of the main frustrations of children, young people and their families is educational settings not making the special educational provision they or their children need.

5.9 CAMHS

“Some children and young people identified as as having SEN may benefit from referral to special CAMHS for the assessment and treatment of their mental health problems”.  Now this is truly aspirational.  Does the DfE know about the wait lists?  Do they know how many children and young people are turned away as “not meeting the criteria” or because they are assessed as “too severe”?  What about those families?

SNJ7-9The good bits?

The timescales proposed (20 weeks from request of assessment to EHC Plan being provided) are better than the current 26 weeks, as is  the clarity that if a particular service is assessed as being needed (eg from a statutory social care assessment), the provision should be delivered in line with the relevant statutory guidance and should not be delayed until the EHC Plan is complete.

The statement that “the assessment and planning process should be as streamlined as possible” along with “there should be a “tell us once” approach to sharing information” – if any LA can cut down on the number of times a family has to re-tell their story, that will be such a welcome change for families.

“EHC plans should be focused on outcomes (both short term and longer term aspirations)”.  An outcome is not the delivery of support or a service, it is what that support or service is trying to help the child or young person achieve.  So your EHC plan shouldn’t say that as an outcome you will receive Speech and Language Therapy, it should specify what that Speech and Language Therapy should help your child to achieve.

Speech and Language Therapy should be recorded as educational provision unless there are exceptional reasons for not doing so.

There was one thing that stood out for me, as a Lead Trainer for Early Support and that is the omission of the key worker role within the CoP.  Key working is mentioned but only four times and each of those is a reference to something LAs may want to consider.  Having been involved so closely with the Key Working training, it feels very disheartening.  The whole ethos of key working and working in partnership is the very thing that LAs, PCTs and parents need to be using as we move forward.  Having everyone concerned aware of what it means and more importantly, what is looks like in practice is essential to the success of the Children and Families Bill.

Legislation on policies and procedures is about the delivery of the Bill, not an outcome of what the Bill is hoping to achieve.  Let’s hope the final COP is more outcome-focussed.

hands-001As this article is published, Tania & I will be travelling up to meet Mr T.  If anyone thinks that is a daunting thought, then let me also share that I am waving K off  on his first ever school trip away just before I head for the train and that is a much more daunting proposition – as any mum will tell you.

So,  if you’re on the train to Waterloo from Kent on Monday morning, I will be the woman desperately trying to disguise my red-rimmed eyes, probably muttering “he’ll be fine, he’ll have fun” under my breath.

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

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.

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.

Children & Families Bill published

logo_dfeThe Children and Families bill, issued in draft form last year, has just been published. Within this bill are the reforms to the way special educational needs are provisioned, including the replacement of the statement with a single Educational, Health and Care plan that will set out all of a child’s needs in one document.

The DfE said:

“Significant reforms to services for vulnerable children and radical proposals to allow parents to choose how they share up to a year’s leave to look after their new-born children have been announced.

The Children and Families Bill, published today, includes reforms to adoption, family justice, an overhaul of Special Educational Needs, reinforcing the role of the Children’s Commissioner and plans to introduce childminders agencies. It also includes the extension of the right to request flexible working to all employees.

The proposed Shared Parental Leave reforms will give parents much greater flexibility about how they ‘mix and match’ care of their child in the first year after birth. They may take the leave in turns or take it together, provided that they take no more than 52 weeks combined in total.

These changes will allow fathers to play a greater role in raising their child, help mothers to go back to work at a time that’s right for them, returning a pool of talent to the workforce. It will also create more flexible workplaces to boost the economy.

Speaking ahead of a keynote speech Children and Families Minister Edward Timpson said:

I am determined that every young person should be able to fulfil their potential regardless of their background. For this to happen we must tackle the disadvantages faced by our most vulnerable children and families. Our measures in the Children and Families Bill do just that.

In this Bill we will overhaul adoption – breaking down barriers for adopters and provide more support to children. We will reform family justice – tackling appalling delays and focussing on the needs of the child. And we will improve services for vulnerable young people – transforming the Special Educational Needs system and better protecting children’s rights.

The Bill will include provisions on the following reforms:

  • Adoption Reform: the Government wants to reform the system so that more children can benefit more quickly from being adopted into a loving home.
  • Children in care: educational achievement for children in care is not improving fast enough. The Bill will require every Council to have a ‘virtual school head’ to champion the education of children in the authority’s care, as if they all attended the same school.
  • Shared parental leave: the Government will move away from the current old-fashioned and inflexible arrangements and create a new, more equal system which allows both parents to keep a strong link to their workplace.
  • Flexible working: the Government wants to remove the cultural expectation that flexible working only has benefits for parents and carers, allowing individuals to manage their work alongside other commitments. This will improve the UK labour market by providing more diverse working patterns.
  • Family Justice: the Government wants to remove delays and ensure that the children’s best interests are at the heart of decision making.
  • Special Educational Needs: the Government is radically reforming the system so that it extends from birth to 25, giving children, young people and their parents greater control and choice in decisions and ensuring needs are properly met.
  • Childcare reform: the Government  is reforming childcare to ensure the whole system focuses on providing safe, high-quality care and early education for children. The Bill introduces childminder agencies which will enable more flexible childminding and removing bureaucracy so that it is easier for schools to offer ‘wrap-around’ care.
  • Children’s Commissioner: the Bill makes the Children’s Commissioner more effective by clarifying his or her independence from Government with a remit to ‘protect and promote children’s rights’.

We’ll be looking at the bill in detail and will bring you views and analysis during the week.

The DfE announcement can be read in full here,

To read the bill and a summary of it, go here

Key Working : Whose Job Is It Anyway?

When the SEND Green Paper was launched in March 2011, the Department for Education said they would “test the role of key workers”.

Several parents approached our parent-carer forum in Kent asking “What is a key-worker”,  “Can we choose the  key-worker  if we are involved?” and “Can a key worker be employed by the Local Authority and be truly independent?”

Confused by Key working?You're not alone...

Confused by Key working?
You’re not alone…

Eighteen months later, parents are still asking the same questions and practitioners are, understandably, asking “Is this another task for me on top of my existing, increased, workload?”

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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?

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Pathfinders, politics and parental co-production

Last Friday, our parent-carer forum in Surrey, Family Voice joined with Surrey LA and local voluntary and community services to host an SEN reform pathfinder update.

Surrey is one of 31 Local Authorities that make up the 20 pathfinder areas, with Surrey being part of the largest group, the SE7.

We had a great line-up of guests including Stephen Kingdom from the DfE, SEN barrister Gulshanah Choudhuri and Susie Campbell, the woman who has been responsible for pulling together all Surrey’s different streams of work for the pathfinder trials – a huge job.

This was an important conference and the right time to update parents whose children these reforms will affect. The draft bill was published last September and since then it has been picked over by parliamentarians, local authorities, charities and lawyers.

Ministerial Assurances

Stephen Kingdom, for the DfE, re-stated the Minister in charge, Edward Timpson’s assurances that no rights would be taken away from parents or children and that there was definitely scope in the draft bill for a tightening up of the language to  make that clear. He said they were working with the Department of Health on structures for redress if a stated provision is not made by a health organisation.

On timescales, he said they would be shorter than they are at present and the requirement for mediation would not extend the timescales for appeal. As mentioned on this website last week, Mr Kingdom confirmed that Speech and Language would stay under the remit of education and said that an ECHP must be as clear and specified as statements “should be”.

The Good, Bad & Ugly

Gulshanah Choudhuri

Gulshanah Choudhuri of SEN Barristers, called her presentation “The Good, The Bad and the Ugly” and addressed some of the legal concerns over the bill’s wording, in particular that there is no duty on health to come up with the provisions in the proposed Education, Health and Care plan, beyond a stated commitment in the new NHS Mandate for ‘joint commissioning’. She called on the government to make sure that children who may not have an educational need but do have a significant disability and so will need health and care provision are included in the final bill.

Gulshanah also called for the new SEN Code of Practice that must accompany the bill to undergo parliamentary scrutiny because it is the bible that parents, SENCos, lawyers and Local Authorities use and as such it is vital that it is closely inspected to ensure that it is the best it can be. Make it updateable by all means, but first of all, it has to be right.

Co-production a “no-brainer”

I spoke on behalf of Family Voice Surrey as co-producers of the conference and this, in itself shows how far we have come in changing the relationship from being on opposite sides to having our opinions given equal weight. If this government is to be lauded for just one thing it is that parents have been put at the heart of the reform and mandated to be closely involved with any decision-making processes that will, of course, affect our children. Even though my boys are now 15 and 13, with an EHCP going up to 25, we’ll be in the system for at least another ten years.

Family Voice Surrey is still a relatively new parent carer forum. We had our launch about this time last year it’s been quite a challenging year so far because we had to plunge straight into the pathfinder workstreams as parent representatives.

Fighting to get the right support can be lonely and isolating and frustrating, especially when it seems that the services you need are not available or you’re told your child doesn’t qualify for them or that you’ve have to fight for the educational help they need every single step of the way.  Expensive legal battles for assistance have become far too common and unacceptably adversarial. We all have many horror stories and they are still being created as this culture change has most definitely not yet filtered through to the coalface of SEN departments up and down the country.

Changing all this is what the reforms are supposed to be about. As parent representatives, we’re not there to window dress. After a tentative beginning on all sides, we’ve worked together for the best part of a year, and our views are listened to. I think that co-production has largely so far been a positive experience. It has most certainly given us a voice as parents and, I think, Surrey has seen the benefits of having the first-hand perspective of SEN services that we bring – even though our views are not perhaps always comfortable to hear.

It’s a no-brainier when you look at it. How do you know if you’re delivering the right support and services if you don’t speak to the people using them and their families?

The Minister, Mr Timpson certainly seems to be listening to those concerns that have been voiced and I hope that the bill’s wording is tightened up as soon as possible. Good intentions and assurances are fine, but I think everyone would feel much better if it was down in black and white in the Bill itself.

Reform – expensive but worth it

As for the trials themselves- they are only just beginning. Some families have been recruited, but this is an ongoing process.  Key workers- the person who is to guide a family through the whole process- are still being found and trained. The trials will need to be monitored and evaluated and, at the moment while there is nothing in law, a child who qualifies for an EHCP will still also need a statement as their statutory protection.

There is still much work to be done, and as the trials have been extended until September 2014, more money will need to be found to support this. There’s no doubt it’s going to be hugely expensive by the time the new system is finally in place, but if there’s something worth doing, it’s this.

In the same way that it is right to support children from difficult backgrounds so that they do not perpetuate the expectation of a life on benefits, it is right to support children with special needs and disabilities because many, though obviously not all, will have a much better chance of becoming a contributing member of society with the right assistance when it counts – in their school years and early adulthood.

This is the way to cut welfare – over a generation of helping our adults of tomorrow reach their potential, have a positive outlook and believe that they can achieve their dreams, wherever they lie. It is the responsibility of today’s adults – all of us – to help make that happen.

Speech Therapy to stay within educational provision – so said the man from the DfE

One question on many lips in the reform to the special educational needs system is, with the inclusion of health in an EHCP, where will speech and language provision end up?

As it stands at the moment, the Health part of an EHCP is not going to come attached to a statutory duty to provide and so if it ends up in the health part of a plan and isn’t delivered, how will you appeal?

However, my friend and SEN barrister, Gulshanah Choudhuri, this week attended the Education Law Association’s specialist SEN group meeting and asked this very question of Phil Snell, policy advisor for the DfE. Mr Snell was giving a presentation addressed to the members of ELA, followed by a question and answer session.

Gulshanah Choudhuri

Gulshanah Choudhuri

Gulshanah asked about her own daughter, who has Down’s syndrome, and whether her speech therapy would go under the new health provision or remain under education. Mr Snell, in front of an audience of around fifty lawyers besides Gulshanah, assured her it would remain under education.

The pathfinders have now been extended until September 2014 – the same month it’s planned to introduce the changes after the bill gets Royal Assent at Easter 2014. This has raised concerns that the legislation will be introduced before the trials on the reforms are complete.

The National Deaf Children’s Society (NDCS) is calling for the bill’s introduction to be delayed, so that the pilots have more time to test the reforms. The charity is particularly concerned about how the new system will fully involve health professionals.

Quoted in Children and Young People Now, Jo Campion, deputy director of policy and campaigns at NDCS, said: “We have been looking closely at the pilots and speaking to families with deaf children. The evidence we are getting back is that professionals in health are not getting involved.

“Some parents are telling us that at the joint plan meetings health professionals are simply not showing up. If these reforms are supposed to be radical then the legislation will need to be strengthened to place a legal duty on health agencies to get involved. Currently that is not there.”

NDCS is also worried that local cuts to education provision will mean less services and staff are available to support children with SEN as the reforms progress.

Mr Campion said: “The cuts are affecting professionals who are working with families in the pilot areas who are under threat of losing their jobs. How will the government be able to test these reforms if there’s no-one left to work with families?”

Contact a Family’s head of policy Una Summerson agreed that the government should take time to consider the evidence from the pilot areas before introducing changes to the law.

“This is an enormous change to the system that needs to be tested properly so we are pleased about the extension,” she said. “But we are concerned that the legislation will be introduced early next year before the government has been able to collect the evidence.”

There are also fears that children with speech and language difficulties could miss out on specialist support under the new system.

The Royal College of Speech and Language Therapists (RCSLT) warned that the majority of children with speech, language and communication needs do not currently have a statement of SEN, and therefore may not be eligible for new single education, health and care plans.

But Christine Lenehan, director at the Council for Disabled Children, said the government is right to extend the pilot scheme due to the complexity of the reforms – despite other concerns about the changes.

“It is encouraging to see the government taking the pathfinder work seriously and giving them additional time to test out what works best in these complex areas,” she said.

Mr Timpson meanwhile said, “We want the best for children and young people who have special educational needs or who are disabled,” he said. “Our reforms will help children get support swiftly, make progress in school and then go on to live independently later in life.”

Source for the second half of this article is Children & Young People Now

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.

SEN Reforms: professional views to the select committee

The Education Select Committee yesterday heard from various witnesses about the draft legislation on Special Education Needs.

Over two and a half hours, professionals gave their views about the draft bill. In this first of two sessions of oral evidence, the Committee heard from local authorities, health, SEN organisations, educational institutions and OFSTED.

A snapshot of the SEN select committee hearing

One of the major concerns that was voices by the professionals throughout the hearing, which I watched online, was the lack of statutory duty on health to ensure that they provide for the needs of children who will have an EHC Plan, even though that came with complexities and difficulties.

Peter Gray from the Special Needs Consultancy said there was an issue for parents around the fact that a single agency (the local authority) would have to enforce commitments from another agency without the authority to see it through and so any agency named to provide for a child’s needs should be duty-bound to do that.

Another issue that was generally agreed upon among the witnesses surrounded the ‘local offer’. Most believed that any local offer should be framed around a national framework to avoid the potential for post-code lotteries. This could be, for example, a national offer with a quality framework and local variation. This would mean that there would be a consistency of provision for every child with SEN, wherever they are in the country, whether or not they have an EHC plan.

It was noted that the local offer was not individualised and it need to be made clearer what was required – was it a directory of services? Would there be parental entitlement or  expected pathways and would it properly include schools and be inspected by OFSTED?

Christine Terrey, Executive Headteacher of Grays school and Southdown Junior school, said that many schools had no idea what would be required of them for a local offer and had no idea of what to put in it. Another witness said they believed that if parents knew what was available by law locally, they would have less need to pursue a ‘piece of paper’.

A third main theme was whether there should be a delay in the legislation – something I believe should happen. Kathryn Boulton of Blackpool’s Children’s Services (which is not a pathfinder authority) said she believed that there had not been sufficient time and many pathfinders are still in the recruiting phases – which I know to be true. She also said there was a lack of clarity about how personal budgets should work and that the learning from the pathfinders should be allowed to develop to allow the bill to be properly informed.

Jo Webber, of the NHS Confederation explained that the new Clinical Commissioning Groups (CCGs) should, in the main, be authorised by next April, but under the new system, provision for a child with severe or complex needs or a physical condition would need commissioning from up to eight different parts of the NHS. There was, she said, a need to seek more clarity, which would take time.

Dr Charles Palmer, from the CYP service in Leicestershire said he believed there should be a delay because expectations of great improvements to the system have been raised among parents’ groups and there is a real danger that with the budget restrictions those expectations simply would not be met. He said that in his local authority they were already restricting the range of children and young people who were being supported through the process so that they would have enough money to help the most needy children.

Another issue that was highlighted was how to proceed with the reforms, taking into consideration that delegated funding for schools was already in existence and couldn’t be clawed back because of the minimum funding guarantee. Kathryn Boulton said that funding was not aligned and uncoupling delegated funding was going to be very complicated and could lead to variances across the country. Because of the Minimum Funding Guarantee it might not be doable.

One point – very close to my own heart – was the provision of mental health services from CAMHS. As I have written before, there is a very long wait to access even an initial appointment from CAMHS, let alone the appropriate follow up care. Kathryn Brown said that the bill should include a specific reference regarding mental health services in the overarching mental health provision. She noted that mental health needs very often run alongside complex SEN and there should be a requirement for mental health provision to be outlined clearly.

Regarding the draft bill proposal for compulsory mediation, a question was raised about lack of a mechanism to provide arbitration between health and education. Peter Gray believed there should be joint accountability between health and education and a duty to cooperate.

In his evidence, Dr Charles Palmer, said he did not believe mediation should be compulsory, while Brian Gale of the National Deaf Children’s Society said that if mediation was mandatory then it made no sense that there was no statutory obligation on health to provide or to mediate and without this, there would be no improvement.

On the issue of transition, there were concerns about coordination, in that adult services do not mesh with those for children and young people regarding the ages at which services stop. Jo Webber said the extension of an EHCP up to the age of to 25 would have an impact on health service provision and costs. Peter Gray said these costs, which included admin, monitoring, provision and review costs should not be underestimated.

The reforms also raised the question, said Kathryn Brown of the costs on local authorities of moving from old to new system and great thought needed to be put into resources and capacity. Would children and young people with a statement be automatically moved to an EHCP and would people post-19 but under 25 who had ceased an educational statement need to be reassessed. The draft bill provisions do not have this clarity and the time and mechanics needed should not be underestimated.

It has been my personal understanding during our pathfinder that children with statements would be left until there was a reassessment need at a review or a transition point was reached, but this is not clearly stated in the bill.

Kathryn Brown also believed that an EHCP should be maintained for a vulnerable Post-16 young person even if they leave education, if they enter an apprenticeship or if they go into custody. The latter should be needed for safeguarding reasons.

Dr Palmer said that the timetable for an EHCP should be linked to that of NHS waiting times – 18 weeks, instead of as at present, six months from referral to statement. Additionally, through the commissioning process there should be clear children’s leads from NHS commission, through local area teams and to clinical commissioning groups to ensure that children had a clear voice at each level.

One vital issue that was raised is that of the SEN Code of Practice, a significant document for schools and parents alike. The CoP will need to be revised or completely rewritten to come into line with the new reforms but, at present, it was noted that there is not duty for t to undergo parliamentary scrutiny and this was unacceptable. Brian Gale said that the new CoP needed to be right from the start – you couldn’t risk loose ends and then find that for the first cohort of children it didn’t work, thus jeapordising their provision and having to fix the new CoP retrospectively.

Mr Gale also related that in his experience, parents do not believe the bill will make much difference because services are being cut every day and it is very difficult to convince them that against this backdrop, there will be an improvement.

He also noted that when it came to a review of a plan, it seemed that only providers were consulted and not the child or the parents and looking at issue of funding – everything is being discussed by the Schools Forum where there is no representation from parents or young people.

Regarding the definitions for SEN, Philipa Stobbs of the SEC/Council for Disabled Children, said they would like the term ‘disabled’ to be clearly included in the definition of Special Needs for an EHCP, as some children with disabilities do not need special educational provision. Any new definition must improve the professional decision-making process for when a child has SEN because at the moment, the definition was too narrow.

Other points raised included:

  • A statement used the term ‘specify’ while the draft bill, at the moment, used the term ‘sets out’ which will only give rise to wooly EHCPs.
  • An EHCP should have broad outcomes and specific objectives, for example age appropriate language, ability to eat independently.
  • Where the green paper had a broader vision, the draft bill did not deliver on that
  • There was a concern that some children with a ‘Band A’ statement would not qualify for an EHCP but there was a belief that all children with current statements should automatically do so.

I hope that in the next session there will be strong input from parents themselves. It is, I believe, scheduled for 6th November. You can watch the whole of the first session here: http://www.parliamentlive.tv/Main/Player.aspx?meetingId=11597

 

Silent Sunday .. For all Parents of special needs kids

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The Special Needs Jungle Story Selection

The Special Needs Jungle weekly news review is back! It was supposed to be away for just a week while I was in Sweden but last Friday I was just too tired to even think about it. The conference was fantastic – so good to connect so many people from across Europe who are all affected by limb deficiency and who are all trying to improve the lives of other people with similar conditions.
This past week, I’ve been working hard on our Family Voice Surrey response to the Education Select Committee’s call for responses to the draft SEN bill. Having seen a number of other responses, there is a wide range of opinion for the committee to consider and I hope it takes note of everything.
This week’s stories that I’ve found include an array of great blog articles – if I’ve missed yours, just leave it in the comments.

One of the comments we hear a lot at Netbuddy is ‘Why does everything for people with special needs cost so much?’ Everything from toys to adaptations – it all seems to come with a hefty price tag. In these strap-cashed days, it’s even more galling for parents to have to fork out more.

Today is the deadline for the Education Select Committee’s call  for responses to the draft SEN bill.

Following the evidence of home educators in September, the Committee will hear the views of local authorities and from the newly-appointed Parliamentary Under Secretary at the Department of Education, Elizabeth Truss MP, who has taken over the home education brief.

Today I’m feeling a little sad. Son2 is off school again with joint pains in his legs. We’ve just been for a blood test and he is awaiting an appointment later this month with a specialist in London

Emma’s story of Fetal anti-convulsant Syndrome

“Why do you bother speaking out/attending meetings/creating surveys (delete as appropriate), nothing ever changes”. I hear this all the time, not from practitioners but from other parents.  Some parents know me well enough to know I am not the type of person who can just accept things and some know that I am in my element when facing a challenge.

I am grateful for ..I was very excited to see this prompt because I like being able to sit and think about the good points on life.  It is very easy to see the negatives in things, especially when you have incidents occur like we did this week.  It is easy to let frustration drain you.  To make you question your faith in fairness.

Today I attended the “Managing Difficult situations” training workshop provided free for Parent Forums via Contact a Family.

A few days ago I fell asleep on the landing. I was waiting for my son to go to sleep.  He is not 1, he is 11, but he tells me that he is too afraid to go to sleep on his own.  That’s Asperger’s for you.

In the largest study yet examining proposed changes to the autism diagnosis, researchers say far fewer people would be cut from the spectrum than previous studies have suggested.

 

Deadline day for SEN select committee consultation – some views

Today is the deadline for the Education Select Committee’s call  for responses to the draft SEN bill.

I’ve seen a number of responses so far. Some are concerned about the legal issues raised by the bill, believing that it reduces the statutory protection for special educational needs and children. I have no legal expertise whatsoever and so am not in a position to offer any analysis of this, but from the position of having background knowledge from working within the pathfinder, some of those potential issues highlighted do not seem completely accurate. However, having said that, these opinions are a vital addition to the responses so that the select committee has as wide a range of opinion as possible to consider.

As a parent-carer forum, Family Voice Surrey, for which I am co-chair, has approached our response from our experience as parents of children with SEN and disabilities and from our knowledge of the Surrey/SE7 pathfinder . Our response is broadly similar to other parent-carer forums who have had the same experiences. It would be wrong for us to include any legal issues as that is not our area of expertise and simply parroting the views of others is unnecessary when they can speak for themselves.

Parts of the bill are clumsily worded, so that if you have been working on the pathfinder, you might understand what the intention is, but it has not been stated clearly or in sufficient detail and this is a huge shame. Quite possibly this is an indication of it being put out too soon with insufficient consideration of the fact that SEN is a hugely complex and broad area. This failure has led some to believe that the government is trying to strip away SEN support by the back door. Again, there may be a Mr Burns figure rubbing his hands with glee in the dark corridors of the Treasury at the prospect of saving money on the backs of disabled children, but this is quite a cynical view. Which is not to say it isn’t true.

My co-chair, Angela Kelly, and I recently took part in an interview with SQW who are evaluating the SE7 (South East group of pathfinder authorities) for feedback and we reiterated our view that the reforms will not be what they might if the pace continues as it is. Corners will inevitably be cut with the trials in some areas to meet artificial deadlines and so a thorough testing of the proposals will not have been carried out. And let’s remember who these reforms are supposedly intended for – the stated aim is that they end the adversarial system and benefit children with special needs and their families. It is not, claim the DfE, a cost-cutting exercise in itself.

But SEN is not just about statements, it is about providing the right solutions for children with complex needs, early intervention, transition, personal budgets and more. With the new EHCP, this will also bring in NHS health and psychological support from CAMHS. It is a massive undertaking and even though people are working very hard to try to make this happen, rushing it for political reasons (for what other reason can there be?) is detrimental to getting reform right.

Even the select committee deadline of today is patently ridiculous – some of the questions being asked as simply unanswerable because there simply has not been sufficient time for any trials evidence to be generated, let alone collated.

Some of the issues with the bill include the problem that only education is at present enforceable, so health and social care have no statutory duty of their own to fulfill the requirements set out in an EHCP. Which means it won’t happen. Also, the issue of compulsory mediation before an appeal can be launched is hugely problematic – it will delay the process unacceptably. And if a young person has finished education but still has health and social care needs, would they still have a plan up to the age of 25 in the same way as they probably would if they had educational but not health or social care requirements?

It is, of course, a draft bill and one can only hope that all the submissions made to the select committee are carefully considered and taken on board and the required amendments made. When the results of the pathfinder begin to filter through, further detail can be added to the draft bill. I would hope that whoever is in charge of setting the bill’s deadline would have the courage to say, “Okay, we do need more time. We were aiming for early 2014, but let’s take another six months”. Does that type of courage exist in the DfE? You tell me.

Here is a list of the responses I have come across so far, with links. If you have one you’d like to share, please leave a link in the comments.

As I find more, I will add them here. Read the draft legislation here

The SEN draft bill: Have your say – but be quick!

The draft SEN bill is now out and will undergo pre-legislative scrutiny by the Education Select Committee. The committee last week issued a call for evidence with their cut off being noon on 11 October, but considering the questions being asked, it might be difficult for full answers to be given, considering the trials are only just about to get underway. Again, things seem, to me and many others, to be being done with undue speed.

The Committee says it may be unable to accept late submissions due to “tight deadlines”. But why are deadlines tight? Who has imposed them? Can’t this time-constrained person just say, “Yeah okay, made a mistake, have another month?” Go on, I bet you could if you really tried.

SEN lawyers are poring over the draft and are already making their voices heard about potential issues they that they believe will not benefit children. They have their chance to submit feedback in the call for evidence, as does everyone who has an interest – parents included.

Several people from local authorities and charities have said to me that the draft bill leaves them underwhelmed and doesn’t go far enough, but I am sure the DfE would say that the key word is ‘draft’ and the final bill and its regulations will be informed by the outcomes from the trials. My view, that things are moving at too fast a clip, legislation wise, for that to truly happen, has not changed. Perhaps ministers or officials should sit in on some of the pathfinder meetings so they can truly see where things are up to. I’m sure they would be welcomed. In fact, they can sit next to me; I’ll save them a seat between me and Ang, my Family Voice co-chair.

Some councils seem to be ahead of others, and the danger is that the DfE will pay more attention to them, when in fact, they may have rushed into trials without the proper ground-work having been done thoroughly enough. The whole process rather reminds me of the tortoise and the hare. I, for one, would rather have a rather more sedate and considered pace. Well, when I say “I, for one” actually, everyone else I speak to involved in the trials thinks the same as I do. That’s EVERYONE. I’m really not sure why the government, who are aware of this disquiet, seem to think we’re all just moaning minnies. I’m not talking about people who don’t want the change to happen – these are people who have committed much time, energy and taxpayer money to this on all sides and truly want an end to the adversarial way that is still, as we speak, continuing.

In fact, tomorrow, I am accompanying a parent to a meeting with an Area SEN Manager regarding funding their chosen placement – and this is for a school that, albeit, independent, is well-recognised as a centre of SEN excellence, cheaper than most LA special schools and where the LA already funds many similar children. This child is only there because he wasn’t given the help he clearly needed when the family applied, twice, in previous years and were refused assessment. I’m still hoping they’ll see sense before we have to traipse over to the SEN office. In the draft bill, equal weight is being given for parents to ask for placements at non-maintained special schools as to any other placement so, hey, here’s a crazy suggestion, why not show some forward thinking and start now?

Part of this problem, I think, stems from the fact that the pathfinder information and changes in culture have not trickled down to the people doing the day-to-day work in the LA SEN departments. In our authority, this is about to be addressed and not a moment too soon.

If you would like to give your feedback to the Education Select Committee, The questions being asked are below. Don’t be put off if you don’t think you can answer every question. Just give the feedback that you are able to. I think very few people will be able to answer every question. If you are a parent or carer of SEN/disabled children, your views are just as important as anyone else’s; more so, in my opinion. If you have found the bill too impenetrable to comprehend, try reading the letter written by the former minister, Sarah Teather, to the select committee committee as this may help you understand the bill’s clauses. There is also a guide for submissions to select committees here

General

1. Does the draft Bill meet the Government’s policy objective to improve provision for disabled children and children with special educational needs?

2. Will the provisions succeed in cutting red tape and delays in giving early specialist support for children and young people with SEN and/or disabilities?

3. What will be the cost?

4. What impact will the draft Bill have on current institutional structures?

5. What transitional arrangements should be put in place in moving from the existing system?

6. What can be learned from the current pilot schemes and how can these lessons be applied to the provisions of the draft Bill?

7. Is there anything missing from the draft Bill?

Specific

8. Whether it would be appropriate to move away from “special educational needs” and use the term “learning difficulties and/or disabilities” instead in the new system?

9. How the general duties on local authorities to identify and have responsibility for children and young people in their area who have or may have special educational needs (clauses 3 and 4) work with the specific duties in other provisions (clauses 5 to 11, 16 and 17 to 24)? Are they sufficiently coherent?

10. Should the scope of the integrated provision requirement be extended to all children and young people, including those with special educational needs?

11. Should other types of schools and institutions be included in the duty on schools to admit a child with an education, health and care plan naming the school as the school to be attended by the child?

12. Do the provisions for 19 to 25 year olds provide a suitable balance between rights, protections and flexibility?

13. Do the provisions achieve the aim of integrated planning and assessment across agencies?

14. How could the power given to the Secretary of State to make regulations with regard to the practicalities of the assessment and planning process be best utilised to achieve the aim of integrated support?

15. What impact will the new powers provided for in the clauses have on young people’s transition into adult services?

16. Should the provisions in this bill relating to portability of social care support reflect those for adults contained in the Care and Support Bill?

17. How could the provisions in the bill be used to reinforce protections for young people with special educational needs who are in custody or who are leaving custody?

Please note that submissions need not address all the questions but only those areas on which you have evidence to contribute. Where your comments relate to specific draft clauses, please identify the relevant clause clearly in your submission.

Please note: The submission should be sent by e-mail to educom@parliament.uk and marked “Pre-Legislative Scrutiny: SEN”. The Committee’s strong preference is for submissions in electronic form, although hard copy originals will be accepted. Hard copy submissions should be sent to Caroline McElwee, Committee Assistant, at: Education Committee, House of Commons, 7 Millbank, London SW1P 3JA

Each submission should: be no more than 3,000 words in length; have numbered paragraphs; and (if in electronic form) be in Word format or a rich text format with as little use of colour or logos as possible.

For Data Protection purposes, it would be helpful if individuals submitting written evidence send their contact details separately in a covering letter. You should be aware that there may be circumstances in which the House of Commons will be required to communicate information to third parties on request, in order to comply with its obligations under the Freedom of Information Act 2000.

Is your MP on the select committee?

Committee Membership is as follows:

  • Mr Graham Stuart (Chair), Conservative, Beverley and Holderness
  • Neil Carmichael, Conservative, Stroud
  • Alex Cunningham, Labour, Stockton North
  • Bill Esterson, Labour, Sefton Central
  • Pat Glass, Labour, North West Durham
  • Damian Hinds, Conservative, East Hampshire
  • Charlotte Leslie, Conservative, Bristol North West
  • Ian Mearns, Labour, Gateshead
  • Lisa Nandy, Labour, Wigan
  • David Ward, Liberal Democrat, Bradford East
  • Craig Whittaker, Conservative, Calder Valley

The draft SEN reform bill – some reactions

One to watch. And we are, oh yes we are.

So fare thee well, Miss Teather, just as the draft bill is published, you get the boot from your job. Hardly seems fair, really, when you’ve done so much of the legwork and now Mr Laws gets to step in to steer the ship home. This is Mr Laws, a man with a vast amount of experience with special needs children (actually, I have no idea – I’m just guessing they wouldn’t put another person who hasn’t had any actual children, let alone any with special needs, in charge of SEN reform. Sorry, what did you say? Oh. Well. They did. *shakes head ruefully*) I’ve seen him described as ‘formidable’. What, compared to parents of SEN/D kids? Don’t fancy his chances much, do you? *UPDATE NOTE: Neither did the government, because roles have since been shuffled and Edward Timpson MP will be in charge of the SEN bill, see this post for more**

Now, I’m not saying in order to do a good job steering any kind of reform you have to have had personal experience of whatever it is you’re reforming, but when you’re talking about something as sensitive as vulnerable children with disabilities and their families, if you have no direct experience, you can only ever sympathise rather than empathise, which is quite, quite different. See, we don’t want your pity, we want you to feel our pain. Just a little bit, because, trust me – you won’t forget it.

Same goes, I am quite sure, for adults with disabiltites who’d quite like the government to stop picking on them and cutting off their only viable means of financial support or taking away their Motability allowances, without which they couldn’t even get to any job that would have them. Oi, you lot in the wheelchairs, why can’t you propel yourselves around the Paralympic stadium as fast as David Weir? You wouldn’t need Motability allowance then, would you?

As someone whose day job is for an international disability organisation, as well as having children with special needs, I really find the whole disability-bashing climate extremely offensive, disturbing and quite frightening particularly when it seems to have been started by our own government, unwittingly or not. I’m also not entirely sure the Paralympics has done a lot for the image of people with impairments who aren’t quite as nimble as Oscar Pistorius. It just seems to have made certain sections of the public think, well if they can do it – why can’t you? (Answer: because they’re elite athletes, you muppets.)

But anyway, now I’ve made that clear, onto the draft bill. I promised my thoughts, but, again because of said job, I must apologise for I have let you down. I am currently preparing a two-hour social media workshop to help patient groups with limb differences make their voices heard online,  and so normal SNJ service isn’t quite up to snuff. But, kind readers, I have managed to seek out the opinions of those who haven’t been quite as distracted and I present them for you in a mini round up, here.

The very excellent Jane McConnell of IPSEA said,

“Now is the time to consider the system of support these draft provision are looking to create and assess whether they will improve and enhance those that are already in place for children, young people and their families across education, social care and health. It is time to be clear and transparent about what can and cannot be expected to be provided by any system. This needs to be a system that works for all children and young people – not just those that have parents to “police” and enforce it. We look forward to working closely with the Government to make the most of this opportunity.”

NASEN’s Lorraine Peterson meanwhile said,

“We need to ensure that all the work that is currently taking place especially within the Pathfinders and the voluntary and community sector is not wasted and will support the final legislation as it passes through Parliament. We have a real opportunity to make sure that this legislation secures a better future for all children and young people.”

I quite agree with this – there is a lot of work being done by many people at the grass roots level, not to mention much money being spent on it. It is to be hoped that (and this will be a mammoth task in itself) when all the pathfinders present all their results, that only the best ideas that work for children will make it into the final bill.

The NAS said,

“The draft legislation sets out provisions for statements to be replaced by Education, Health and Care Plans (EHCP), which will extend statutory protections for children with SEN up to the age of 25 for those in further education.We believe that this will help improve transition for young people with autism. However, we are also working on the draft social care legislation to help improve transition into non-educational support.”

They highlighted various points from the bill some of which are below:

  • Legal definition of special educational needs remains the same [My note: Not sure how this could be changed, anyway]
  • Local authorities and clinical commissioning groups must make arrangements for jointly commissioning services for children with SEN in their area [My note: Well, from what I’ve seen so far within the pathfinders – good luck with this, there is a LONG LONG way to go]
  • Local authorities must produce their ‘local offer’ of available education, health and care services
  • Education, Health and Care Plans (0 – 25) replace statements of SEN [My note: It is quite likely however that there will need to be several versions of an EHCP format, depending on the child/young person’s age
  • All of the provisions of the Bill will apply to all schools including Academies and Free Schools [My note: And quite right too]
  • Local authorities must prepare personal budget in relation to an EHC plan where a request has been made by the parent or young person [My note: But no parents will be compelled to have one for their child]
  • Compulsory requirement for a parent or young person to participate in mediation before they can appeal to the Tribunal [My note: This can only benefit a parent who will then get a right to point out parts of their child’s application that may have been conveniently overlooked or just plain ignored – however, many parents, if not all would most likely want or need a representative and/or their key worker to help them prepare and attend with them.
  • There will be a revised Code of Practice [My note: Well, duh, not just a revised CoP but a completely rewritten one, from start to finish. And who’s going to do that? And when? Before the bill goes through parliament? At the same time? After?]

And this sparks another thought: Not only will there need to be a new Code of Practice, but every local authority will have to rewrite its graduated response documents and all its other SEN literature. There will, naturally, be a cost associated with this, and it will also take time – they can’t write it before they know what the new laws are. Then there is the cost of retraining all those LA staff who think parents are money-grubbing, sharp-elbowed harpies who are trying to bleed them dry.

I’m hoping to bring some parents’ views of the draft soon. if you’d like yours included, please do send them to me.

In my few months working with the LAs and colleagues on the pathfinders so far, I have to say I have met some incredibly dedicated, knowledgeable and caring people. A few are just plain wonderful. It’s going to take time for the rest to be whipped into shape and, as I said in my last post, they’re not exactly making an early start on changing attitudes at the lower levels.

But you know what? I’m optimistic. You have to be, in such a root and branch overhaul like this. While you cannot ignore the many areas of concern, without putting forward a positive attitude and a will to work for change, it cannot succeed. Let’s just hope that those people working so hard for it don’t drop from the pressure of tight timescales and overwork before then.

And Mr Laws? I’ll extend the same invitation to you as I did to Miss Teather – we’re having a pathfinder event in November, a joint parent and LA organised one in Surrey. Do come. You have, I am sure, a lot to catch up on and this will be a great place to do it.

Special Educational Needs reform update

Hope your summer is going okay! We’re just back from Italy where we were devoured by relentless mosquitos day and night.

Just thought you might like to read this pdf of the June 20th Select Committee on SEN at which Sarah Teather spoke about the SEN reforms. I wrote about it here but now the transcript has been published, so I’m putting it here for you to read in full, including the views of five experts including Jane McConnell of IPSEA.

This September, pathfinder trials will be getting underway, although in many areas, the thorny subject of who the key worker is still under discussion. If you’ve been approached to be a pathfinder family, I’d love to hear from you. Alternatively, if, like me, you’re a parent involved in the pathfinder development, let me know your views on the process.

There will be another update from the DfE at the end of October but if you’re interested with the process, reading this document will be informative.

Active listening: a core skill for SEN reform

Yesterday, MumsNet hosted a live web chat with Sarah Teather, Minister of State for Children and Families.

I recently posted an open letter to Miss Teather, to which I’m still awaiting a response. Last week I spoke at a Surrey pathfinder event on behalf of Family Voice Surrey and in front of DfE senior official, Stephen Kingdom. I made sure to mention our concerns about the timetable for reform that everyone, outside the government, is very worried about. I spoke to Mr Kingdom, a very personable chap, afterwards, to ask him to pass on these concerns to Miss Teather. A day later, he emailed me to tell me about the MumsNet webchat and I was delighted to publicise it on my various social nets (and thanks to everyone who retweeted!) so that as many people as possible could get their questions in. Including, of course, me!

Here is my question:

Hi. My name is Tania Tirraoro and I am co-chair of Family Voice Surrey parent-carer forum. On behalf of FVS, I sit on both the Surrey Local Change Board and the EHCP workstream, part of the SE pathfinder. I have two statemented teenage sons with ASD and I am also the founder of the website, Special Needs Jungle.
I can see how hard parents and professionals alike are working on this reform and how much many LA staff want to do things differently. There are many challenges and details to be worked out and worked through. Our EHCP trial isn’t even set to start until September, and we are far from alone.
I would like to ask: What is your objection to listening to (as opposed to hearing) all those expert voices who are telling you that any draft bill should be delayed until the New Year?A delay of a few months won’t stop this process (described by someone in your department as an ‘unstoppable train’, rather worryingly), but it will give those involved time to work through the pilots, making adjustments as they go without feeling the unnecessary pressure of looming legislation.
The genie is out of the bottle – reform will happen, but you’ll be remembered much more favourably if you give them time to do their work without the extra pressure that fitting into an artificial timetable will bring and you will end up with a stronger, more sustainable system that will really work for children with SEN & disabilities and their families.
Stephen Kingdom, your DfE colleague, told me last week the process will evolve and it won’t be a final bill – if that’s so, why bother publishing it until you actually have solid results to use?
Thank you for your time.

Despite being in bed recovering from surgery, on Monday I logged on via my iPad to read all the many questions posted – and there were lots of questions from concerned parents about various aspects of SEN provision.

It has been clear to me for some time that anyone outside the actual pathfinders doesn’t really know what stage they’re at, or what they’re even about. If you’d like to know more, I would thoroughly recommend this article in SEN Magazine from Jane McConnell, CEO of IPSEA who has a good grasp of the issues and spoke at the recent Education Select Committee on SEN.

Even though it wasn’t the first to be posted, my question was the first Miss Teather chose to answer, not that there is anything to read into that. See below.

SarahTeatherMP Mon 16-Jul-12 10:37:55

Tania Tirraoro asked a question which was picked up by a few of you:
I would like to ask: What is your objection to listening to (as opposed to hearing) all those expert voices who are telling you that any draft bill should be delayed until the New Year?

The most important thing I should stress is that what we will be publishing in September is just a draft bill – it is for discussion, not for debate in Parliament. We won’t be publishing the real bill until the Spring next year. The draft bill is an opportunity for parents and charities who are expert in this area to look at our ideas and tell us what they think. The education select committee in Parliament will also run a kind of inquiry on the draft proposals. It is one of the many stages we are using to test out people’s views and make sure we have the detail right.
It is also important to remember that this is the half way point in the reform process. We began in September 2010, asking people’s views on about what should change, then we published a green paper in the spring last year, more detailed proposals a few months ago, the draft bill in September and the real bill next year. We will also have lots of time in Parliament to debate the bill. It isn’t being rushed through. It will run over two Parliamentary sessions. And some of the legislation will need to be done in what is called secondary legislation at a later stage.
Throughout this process the pathfinders will be testing things out and we wil be getting formal reports. The pathfinders of course are not just testing out the proposals for the legislation. much more importantly, they are about changing culture. You can’t legislate to make people listen – you need to get better at it.

Sarah

I didn’t post a follow up, she only had an hour and there were a lot of questions to get through. The answer was interesting and informative but it still doesn’t answer the question posed further down in my posting – why publish a draft bill if the process is nowhere near ready for it and there is still feedback to be sought from parents and charities? This would seem to be a waste of time and money.

It is this draft bill that is putting unneccesary pressure on the professionals involved in the pathfinders who are trying to do their best – it is unfair and unrealistic. At this stage, in Surrey, we are only about to start talking about who a key worker should be and what qualities they need. But key workers need to be appointed before a trial can begin. Likewise a plan writer. This work WILL be done, but why place what amounts to a false deadline to loom over their heads?

Speaking as the parent of children with special needs (and I’m pretty certain that my views are echoed by most other parents and professionals), give them time to get it right! Why not say, okay, we will have a draft bill, but to instil confidence in the government’s intentions to get it right, we will listen to these concerns and make a much more informed draft bill in January. Would that be so difficult? Really? We wouldn’t think badly of you, we would all breathe a sigh of relief that the job could be done without a guillotine hanging over the heads of those doing the work.

The perception that without this October draft bill nothing will happen is utterly wrong. All it’s doing is causing anxiety and the impression that the government is steaming ahead without regard for the reality of the situation.

One very interesting point Miss Teather mentioned – and it’s something that is at the very heart of the reform – is culture change. This also is going to take money and time. People may lose their jobs over it if they can’t adjust to a new way of thinking. The idea of children and families as ‘client groups’ as I heard one person call them, must come to an end. Children are not clients, they are the vulnerable young people that this process is all about. You can’t change culture by a wave of the wand – extensive training needs to happen.

On top of this is the massive shake-up  in school funding that is happening all at the same time and it is causing much anxiety, frustration and confusion. Mr Gove seems to forget that with all his ‘fantastic’ ideas, he is creating uncertainty in already uncertain times and this cannot be good for schools, teachers or ultimately, children.

So, thank you Miss Teather, for taking part in the web chat yesterday. I’m not really sure if anything you said made anyone actually feel better, but it was a nice gesture. I know you’re busy, but you need to do more getting out and about like this. You see, parents of children with special needs are a cynical bunch and for good reason. Actions speak louder than words to us.

Can you really understand what we’ve been through and are still going through? I don’t really think so, but delaying any draft bill to the new year would be a good indication that you are listening to those of us who are in a position to speak on behalf of our fellow parents who are too stressed and overwhelmed with their situation to have time to speak up for themselves.

 

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

Dear Miss Sarah Teather

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

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

pencils

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tania