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.

 

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

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

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

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

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

**

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

SEN – The Next Steps – My views & Meridian Tonight feature

So, there’s been much furore today about the headlines for proposals that  450,000 children be ‘struck off’ the SEN register. This is a bit of a stupid headline, to say the least. I was interviewed by Meridian Tonight (clip at end of post) about it for my views as a parent of SEN children.

The story was linked to this announcement from the DfE today that continues on from the SEN Green paper on Special Needs and Aspiration, that was trailed last week. It seems that any story about children with special needs is pounced upon by the haters and the critics. Oh, those bad teachers. Oh those terrible parents. Oh those benefit scroungers. I can guarantee you that none of those people who make moronic comments like that are either a teacher or have a child with special needs, which means that they should, quite frankly, shut up.

The key points in today’s “Next Steps” announcement were:

  • The new Education Health and Care Plan (EHCP)  will eventually replace the statement and will last from birth to 25 for those children who need it. The EHCP will be a “single assessment process, … ensuring that families have confidence that all of the different local agencies – across education, health and social care are working to together to meet their needs. This will stop parents having to have to undergo repeated assessments with different agencies.”
  • Personal budgets: all families with an approved education, health and care plan will have a legal right to request a personal budget, if they choose.
  • Joint commissioning: LAs and clinical commissioning groups would have to put arrangements in place to ensure that services for disabled children and young people, and those with SEN are planned and commissioned jointly.
  • School choice: parents whose children have an education, health and care plan would have the legal right to seek a place at any state-funded school of their choice – whether maintained, academy, Free School or special. LAs would have to name the parent’s preferred school so long it was suitable for the child, did not prejudice the education of other children or did not mean an inefficient use of funds.
  • Local offer: all LAs would publish a ‘local offer’ of  support, so parents would know exactly what is available instead of having to fight for basic information.
  • Mediation and the tribunal and children’s right to appeal to a tribunal: introducing mediation before Tribunal for disputes and trialling giving children the right to appeal if they are unhappy with their support.
What some sections of the press jumped on was that the statement from the DfE mentioned an OFSTED report from 2010 that claimed many children were wrongly identified with SEN. I touched on the reasons for this in my post on Saturday, so you can read it there. But to say that this happens often or even routinely is a huge exaggeration.
It is quite right that the government should seek to provide the most appropriate provision for children whether they have actual SEN or whether they need nurture groups because of family difficulties. If they can bring forward the funding and expertise to put this in place, then they should do it as soon as possible.
What they should NOT do as soon as possible (ie, this summer) is think that their policy can be informed by any results from pathfinder trials of the EHCP. In Surrey, this is still at a very early stage – ie, we, at Family Voice Surrey, are not even sure that any families are yet trialling it, so to have any firm conclusions drawn by this summer is optimistic in the extreme.
Tomorrow, Surrey has another day-long EHCP meeting that myself and my FVS colleague, Angela Kelly, will attend with great interest.
What must NOT be done is for these plans to be rushed through for political reasons – we are talking about the futures of some of society’s most vulnerable and if you’re going to shake up the system it should be done properly, in a considered manner.
Anyway, now for the light relief. Christine Alsford from Meridian (where I cut my TV reporter teeth) came over and filmed me and Son2. Son2 only agreed if he could be in his BodySox and the crew thought this was a genius idea.  What do you think?