Change, choice, control – and condiments

Helen Wheatley, Assistant Director at the Council for Disabled Children reflects on change, choice and control.

Headshot of Helen WheatleyWe are currently in a time of significant reform that will continue to mean a lot of change for young people, families and every service locally. The intent of the government’s proposed reforms to the current system to support children with special educational needs and disabilities is to focus more on outcomes, listening to the voice of families, and flexible, responsive and timely support where families have greater choice and control within the system.  Great! I hear you say. Yes, it is great. The challenge of course is understanding how to make any change work in practice. It sounds so easy on paper. Bring services together more, do some joint planning on budgets, talk to families and young people. Pop in some high quality, timely and responsive services. Done.

Not so fast. Humans are a messy and unpredictable lot who need significant space to collectively move from one way of working to another.  And to understand and work with a range of views and needs until we get a workable consensus.  That’s the really tricky bit.

I was reminded of this on Monday morning. I frequent a lovely cafe on the way to work which does excellent Jar of marmitecoffee. This week they had a sign up advertising their ‘new line’ of toast. Not just any old toast but toast made with sourdough bread. Imagine my delight! We (the regulars) had been hinting for some time that toast (any sort) would be a welcome addition to the menu.

Excitedly I placed my order beaming with anticipation. Then the question came, ‘do you want blackcurrant or raspberry?’ ‘Erm, do you have any Marmite?’ I asked. The staff looked stunned. Other customers stopped conversations. Only the sound of the oranges being squashed in the fresh juice maker could be heard.

I could see the disappointment in the face of the owner. ‘I can find some marmalade?’ he said. Similar sounding but a world away in taste. ‘No thanks, I’ll have blackcurrant,’ I replied, thinking, well come on, they have toast! Nothing is perfect – so let’s show willing.

The toast arrived – with raspberry jam – there had been a run on the blackcurrant. So, there I sat, with my one slice of toast (the additional cost of the posh bread had to be met from somewhere so only one slice of a higher quality product per order) with raspberry jam. Which I can’t stand.

Thankfully the friendly staff in the lovely cafe recovered from their shock and realised two things:

  1. Everyone has different needs and wants, and people ask for things all the time. You need to work with them to understand their needs and provide clear information on the how you will meet them.
  2. Some people do actually like marmite.

Each of these points (in different ways) can make trying to implement change and provide a good service difficult, time consuming and with a regular need for review. However we know (because there is a wealth of evidence available) that taking this approach generally results in support which meets needs, has good take up and is sustainable.

Quote - if we are to make change work then reconising that families and young people have different needs, wants and aspirations is keyLocal areas and partner agencies would be delighted I suspect if their biggest challenge was the provision of toast toppings. However, the same principles apply. If we are to make change work – in particular moving to a more individualised approach where young people and families do have choice and control – then recognising that families and young people have different needs, wants and aspirations is key.

Also key is getting leaders together locally and decide on one who will champion the change, not to mention: having families and young people as partners; bringing services together more; joint planning on budgets, creative discussions (or rows) about the best way to do this; including high quality, timely and responsive services; reviewing them; recommissioning the successful ones and learning and move on from those that didn’t work. An extensive list, and far beyond the list of toast condiments at my lovely cafe!

In our role as Strategic Reform Partner the Council for Disabled Children is collecting and providing information to government on what works well to support the reforms. We would really like to hear from you if you have information, evidence or you are working on a project you would like to share with us. Using your evidence we hope to help shape a new system that offers jam to those who want jam and marmite to marmite lovers but most importantly gives families a choice between all the options available.

We welcome your thoughts on Helen’s blog and your thoughts on the reform process (or on toast…).  Please leave a comment below and Helen or someone in the CDC team will get back to you. All comments are moderated (so may take a day or two to appear) and must obey our house rules. Thanks!

22 thoughts on “Change, choice, control – and condiments

  1. I think there is no genuine commitment or energy to change what is really wrong with the SEN system. The core problem is that decisions about meeting a child’s needs are left to LAs and their block contracted partners in the NHS who are working to funding demands and not to meeting need.

    Nothing will change for parents who will still have to fight LAs (and their NHS services partners) who consistently deliver the cheapest possible generic provision under block contracts with no capacity or strategy for the objective measurement of outcomes

    It’s all about money and control. LAs don’t want DPs and will get out of them at every opportunity as has been demonstrated by the poor levels of trialing for Pt 3 statementing provision. If a block contract is in place, the LA will refuse to offer a DP. They don’t want to lose control to independent therapists who may be more honest about a child’s need for support and who may actually quantify and specify this support in their reports as required by law. Whereas, of course, they routinely prevent LA instructed NHS therapists from doing this.

    Unlawful practice is rife across LAs. Many parents are told ‘we don’t do statements’ or ‘we have delegated all the money to school so you don’t need one’ (see comments made to the Education Committee in front of your own Phillipa Stobbs) or a multitude of other blanket policies which try to put off applicants. How does the bill change the rampant law breaking which deprives a child of their rights? How does it help get provision in place when it is needed? How does it alleviate the burden on parents who have to spend thousands on independent reports to take a case to Tribunal? How does it stop councils dragging cases out for 6-8 months to Tribunal only to settle 2 weeks before knowing they won’t be penalised? How does it improve oversight of LA practice – the LGO is useless? It doesn’t do any of these things. And we should all say so. LOUDLY

    The focus of any reform should have been children’s rights not networking amongst professionals. The core of the reform process should have been about strengthening rights in the child’s favour to ensure that the law currently in place is actually enforced with clear penalties for non-compliance and law-breaking and legal aid being granted in the child’s name for Tribunals. This, and giving parents, and therefore their child, the RIGHT to choose their own health care providers for education as well as health provision would have helped enormously. But of course the Bill doesn’t do any of that. It doesn’t incorporate basic requirements of the Convention on the Rights of the Child or even emphasise that decisions should be taken int he child’s best interests.

    It will not improve the lot of children with SEN and that really should be your starting point.

  2. Also reducing the battles faced by parents and vulnerable children to descriptions of jam on toast is pretty silly and potentially very alienating.

  3. A child’s fundamental right to receive an adequate education is something many LA’s have totally lost sight of. The existing law needs to be enforced without fail at all stages of a child’s formative years. Instead families are routinely lied to, and children are routinely failed as a matter of course.

    I don’t want “choice”, I want the existing laws to be adhered to, and evidence based practice to become the norm amongst professionals, instead of sneered at. At the moment too many families are losing their homes, careers, credit rating, privacy and childhoods in a futile fight against a system which treats the law with contempt and children as irritating commodities, useful only as in it applies to their own promotion prospects.

    In many areas children with SN’s are being routinely weeded out from academy admissions, in some areas this means that all this talk of choice is a mockery that upsets, not inspires worried parents. Lots of SN kids are at any time, receiving NO education at all, having been “managed out” of the system. The basic UN rights of the child do not apply to a child with SN in the UK today.

    Considering that no real work has been done to establish how the new system will be enforced, that the pathfinders pilots have demonstrated the continued avoidance by LA’s to actually implement evidence based practice that delivers measurable outcomes your post was rather trite and shallow.

    I am very worried that you consider yourself an advocate for vulnerable children when you do not appear to have grasped the gravity and severity of the issues facing our children, nor do you demonstrate any understanding as to what the KEY barriers to attainment are at this time.

    1. Professional self-interest groups are driving these reforms, not children’s rights or needs.
    2. How is the law to be enforced, without enforcement the current culture of corruption, lies and collusion will continue unabated.
    3. Are we admitting that not all children in the UK have the right to receive an adequate education? This is what is happening on the ground, so if points 1 & 2 are not to be addressed then lets come out and tell parents openly, so that they will not be disappointed.

  4. You might like to note what is actually happening at grass roots level which demonstrates that developments will remove choice and rights from children.

    One parent who works in a school told me:

    “When I recommended two statements continue in their current form at two recent Annual Reviews the LA decided at the panel meeting to cease them because the funding for support is now in schools for children who require less than 20 hours 1:1 TA time. We are not a Pathfinder authority. We have been told that there will be no more statements after April 2014 and that the Government want only 1.6% of children with the new EHCPs. This is what our LA have advised us.

    So, presently, although the law has not changed, our LA is refusing to issue any statements they don’t think will convert to EHCPs (so must have an educational AND health component) and are ceasing all statements under 20 hours. Schools have to deal in-house with children they would normally have recommended for up to 15 hours statementing support because we have the (very notional ) funding to supply it. It’s a very large step back in time and it’s all about saving money.

    The authorities we border with have continued the statements. Parents are confused as they have been told nothing. The changes are being rushed through with no proper foundation and despite the failure of Pathfinder authorities even with an 18 month extension to find a path.

    The worrying thing is that saying schools have the cash means there is now no legally enforceable right to provision for these children. Also, this affects children who can’t get a place in a special school without a statement”

    This comment reflects what I have been told by other parents who have also been informed that their LA will not entertain an application for a statement despite the fact the law has not changed and they are not offering access to alternative equivalent enforceable provision.

  5. Reforms, integration, personalisation. Sounds good. The reality is that new statements are routinely being denied. Even children with very significant needs, those who clearly require full-time 1-1, special school, or even residential schooling, are already not being ‘statemented’.

    “Reception is part of the foundation stage, just like playgroup, so she can stay at preschool”
    “Put him into X school, we can’t tell if he needs sign language till he’s tried mainstream”
    “She’s an August birthday, so there’s no legal requirement for a school place till next year”
    “Why do you say mainstream can’t meet his physical needs? [hydrotherapy / daily physio]”
    “You’ve moved, so we’ll need to re-do statutory assessment before placement”
    “School have enough delegated funding under SA+” [full-time 1-1, SLT/OT, equipment]

    Never mind marmite or jam. Allocating some stale, dry bread would be a start.

  6. At the moment, LAs have blanket SEN policies that routinely break the existing Education Act and play mere lip-service to the current SEN Code of Practice. If a parent dares to go against their LA in their fight for an “adequate” educational provision for their disabled child, then the parents are treated with contempt and tactics that can only be described as “institutional bullying”,

    Will this change with any new legislation? Will LAs finally be brought to account and made to explain their actions? Or will the LAs once again change the rules and deny even more children than they do at present?

    I have been told by several people (including my lawyers) that I should move away from my home and family into an area that has a “better” LA. That is, into a LA that does not routinely break the Education Act and thinks that it’s ok to deny provision to the most vulnerable in our society: a disabled child. Why should I move away! I wasn’t aware that we lived in a nation where different counties have different sets of laws.

    Any new laws have to be applied consistently and legally across every county and every LA, and have total transparency. If a LA breaks the law, then there should be penalties designed to stop them from doing it in the first place and then from them doing it again.

    This isn’t about whether I ‘want’ to have one provision or another for my child (or whether I want jam one day and marmite the next). This is about what my child ‘needs’ to be able to access a basic British right: an education. And that those that are in the position of power to give me those “needs” do it legally and morally.

  7. I agree with the above posters. There is a conspiracy of silence among Government and leading charities about the fundamental flaws in the new bill – a bill that does nothing to address the problems faced by families up and down the county due to local authorities flouting the law. There is no current or proposed mechanism to prevent this systematic widespread abuse continuing. Everybody know it happens but nobody will acknowledge it.

    Government does not acknowledge it – why? Is there perhaps an alternative agenda – cutting budgets/ reducing support? Charities do not acknowledge it because they are desperate to have a seat at the table and to appear relevant – to be leading the response on behalf of parents and children. They are also conflicted because they are paid by Government to be part of the process. They have been effectively ‘captured’ by Government.

    I too was shocked watching the video of Philippa Stobbs from the CDC sat in front of the government select committee and remained silent when a person from an LA described how they had stopped issuing statements (unlawfully). Not one peep from the CDC!

    This bill will extend rights to age 25 for those still in education, though the devil of course will be in the detail. This is a good thing. The rest will make little difference. Why don’t you adress this issue?

  8. Hello Debbie, Louise, John and others,

    Thank you to all of you for your comments; I agree that much of the change that needs to happen to ensure families get the support they are legally entitled to is cultural and that in some areas there is a significant way to go before families needs are being properly met.

    Relating the issue of choice and control to deciding between different breakfast choices was in no way intended to minimise the struggle many families face to access the services they need. It was simply meant to illustrate how different families need different support, and that it is as important the commissioners listen to families’ needs and aspirations as it is for local business to listen to the needs of their customers. The Council for Disabled Children presents messages in many ways to many different audiences; our blog is just one the more informal routes that we employ. The analogy was designed to grab attention and provoke thought, not trivialise; and can only apologise if some of you have felt that that is what it did.

    CDC’s role as Strategic Reform Partner is to provide policy advice to the Department for Education on the proposed SEN and disability reforms as well as communicate information about them; we have not authored the reforms ourselves. We are committed to continuing to feedback concerns like some of the points you have raised to the Department for Education. Our specific parliamentary work on the Bill is directed through both the Special Educational Consortium and the Every Disabled Child Matters ( campaign.

    Several of you raised cases around illegal practices with local authorities; CDC cannot provide advice on individual cases, however you can channel them through organisations such as IPSEA (, which many of you have already done so, as well as speak to your local Parent Partnership Service for advice (

    You may be interested in looking at our Disabled Children: A Legal Handbook resource which is available free on our website at: We have also recently produced a briefing on school funding for parents, available for download at:

    Thanks again for your feedback. We are contactable on if you wish to discuss anything further.

    – Helen, CDC

  9. Thank you for your reply, and apologies for the many typos in my last post. Perhaps you could spell out CDC’s position on whether the CDC believes:

    1 there is widespread unlawful activity by local authorities wrt disabled children?

    2 if so, what mechanism will prevent this from happening in the new bill?

    3 if not, is the CDC prepared to research the allegations made by many parents of eg inappropriate refusals to assess a child’s needs, unspecified, unquantified statements, professionals being gagged, collusion between LA’s and health services, the opaque use of panels for decision making (no minutes, no witnesses, panels chaired by SEN officers making the final decisions, all documents shredded at the end of meetings?) etc etc. What is the CDC’s views on these things?

    Does the CDC accept it has a conflict of interest in that it is taking Government money to research aspects of the C&F Bill whilst at the same time representing parents’ and children’s views to Government?

    Will the CDC publish the contract(s) it has with Government?

  10. Cultural change frequently requires a legal imperative or we wouldn’t have the Human Rights Act or the Equality Act. Legislation can compel public bodies to change practices. Do you agree?

    I have to say it is profoundly patronising to advise people to go to IPSEA or Parent Partnership (who are hardly impartial from their LA paymasters and frequently pump out LA policy as if it was law).

    I am not asking you to advise me personally but to acknowledge widespread lawbreaking which is driven by lack of legal restraint, poor oversight and a desire to keep costs down. None of this will change with the Bill.

    Anyone who has read the history of these reforms will know that there is ample evidence for that so what is being said is not new information and you should not be taken by surprise by it.

    There was an opportunity with these reforms to take funding and assessing out of the hands of the LA and break the imbalance of power. But there are too many charities making money out of these reforms for anyone to speak openly against them. Job well done Government!

    I echo completely the comments made by John above.

  11. I completely agree that the basis for this legislation is primarily political posturing and it has very little to do with making anything better for children. The starting point was said to be that the system was not working, which is true; however, the reason the system is not working is that local authorities routinely disobey the law, not that there is necessarily anything very wrong with the current system. And there is nothing in this legislation which changes that. Telling people to go to IPSEA is, with every respect, feeble. Councils disobey the law because they know that few parents know that they can enforce it, let alone how – therefore they know that in 90% or more of cases where they deliberately break the law they can get away with it. The situation is even worse since the availability of legal aid for education law was drastically cut down, and we now have the government trying its best to make it yet more difficult to enforce local authority duties by reducing the availability of legal aid for judicial review actions. Therefore what is needed is something that penalises councils severely for unlawful conduct without it being left to the individual parent of a disabled child, who has more than enough on his or her plate anyway. I would suggest that, as a minimum, the local offer requirement should be drastically beefed up with penalties both for failing to have a credible local offer in place, and for failing to comply with it.

    The other very disappointing aspect of this legislation is that the government has failed to take the opportunity to make the social care and health aspects as enforceable as the education aspects. For many disabled children, there is often a massive overlap between their education and social care needs, but with the new EHC Plans it is only the education part which can be the subject of an appeal to the tribunal, and only that part which can be enforced through the courts. Some children need, for instance, a residential school place as much for social as for education reasons, but under the current system the tribunal might completely agree that it is needed but cannot order it unless it can find some educational reason alone. When the Green Paper came out, we thought that someone was going to have the sense to remedy that, but nothing has been done.

    This is a serious waste of parliamentary time and money. The very limited improvements which the Children and Families Bill has introduced could have been dealt with much more simply by way of an amendment to the Education Act 1996. It’s obviously too late to do much about that, but the CDC really should be using its fairly privileged position vis å vis access to the government to be lobbying hard to deal with the issues identified in the comments on this thread.

  12. I don’t care what the law is. I really don’t. I just want it enforced. Then we will all know where we stand. The failure of the system is entirely due to Local Authorities being green-lighted to break the law with regards to making provision for children with SEN, by the bodies set up to regulate and police this.

    Parents waste or use all of their limited resources knowing that the law is on their side but confused as to why the LAs don’t seem to realise this, until it eventually dawns on them about 3/4 through a 2 year complaint process that actually the Local Authority had no intention of obeying the law as those in power to enforce it will support them at the expense of their child.

    Let’s start with a law. A very simple law. Let’s practice it’s enforcement and then build on that.

  13. Thank you for the link to Parent Partnership. Looking at my own LA, Essex County Council, I can see from its address that this supposedly independent charity ‘sits’ in County Hall and has an email address. This is hardly a service that is independent of its LA.

    It is ironic that you, the Council for Disabled Children, are not talking directly to the people who have the most knowledge of disabled children: their parents.

    Exactly 23 years ago I worked with the National Children Bureau (aka Council for Disabled Children) on a project to determine the impact on children who had disabled parents. My role in this project was to transcribe hundreds and hundreds of audio recordings of interviews with young parents who had Parkinson’s Disease. These recordings were direct interviews conducted by the NCB with parents affected by this terrible disease. The recordings resulted in many thousands of pages of direct evidence as to the devastating impact of this disease on families.

    As I said, that was 23 years ago in the days of pre-internet, pre-email, pre-modern technology. The interviews were conducted with hand-held recorders, and I painstakingly transcribed every single cassette tape using a foot control audio unit and pre-Windows Word processing software.

    Why cannot the same be done today? Why can’t parents who have been through the Statement process not have their evidence collected in such a manner. Why can’t parent’s voices be heard? The money, technology and effort were there 23 years ago: why isn’t it today?

  14. I’m a parent of two disabled children. I’ve watched the progress of this Bill with interest. Detached interest, that is. Because ultimately, this Bill offers our kids next to nothing unless it’s backed by robust enforcement of the law and greater investment in SEN services. And parents who’ve been in this arena for long enough know that this is not going to happen. It didn’t happen when the public purse was bulging, and it certainly won’t happen now.

    We know that the cafe in question here isn’t a nice, family-run customer-focused outfit. It’s a North Korean soup kitchen – where parents are queueing out of the door for scraps that do not and cannot meet our kids’ needs, and where customer service and choice is provided by unaccountable apparatchiks who treat customers with much the same respect as a dog treats a lamp-post – in large part because the cafe’s stockroom is almost bare.

    This is the issue here, and the Bill is largely silent on it.

    My kids are brighter than me. They are more determined than me. They work twice as hard in the course of a school day than I do in a month. They are the dictionary definition of the “strivers” that this Government likes to praise so much. But despite all of this, they’ll have a tiny fraction of the life chances I’ve had.

    It’s not because they’re disabled – at least not directly. They accept their disability. We as parents accept their disability. Even society, by and large, accepts their disability and their right to play a full part in society. There are ways and means of ensuring that they can do that. But they are drowning – for one reason, and one reason only. They are not getting the support they need, in the quality and quantity they need, when they need it most. And the people who are stopping them from getting it are the people whose job it is to help them.

    It’s not just the hollow-souled folk in the LA SEN offices. The malaise goes much, much deeper than that. It’s the school senior leadership teams who believe that £6k is better spent on mock Ofsted inspections than bought-in SALT. It’s the Tribunal panel members on £450 per day who aren’t prepared to link special educational needs to academic attainment. It’s the council chief executives who pay end-year bonuses to SEN managers linked to expenditure on non-maintained or out of borough placements. And ultimately, its a Secretary of State who is willing and able to bring LA education services to heel when it suits him – but who won’t do so for disabled children in their hour of greatest need.

    I’ve been fighting for my kids’ education for the best part of 10 years. The same goes for most of the families I know who have disabled children. At least, the ones that are still together. Many have come apart at the seams – not because of the disability, but because of the stress of getting, securing and accessing support.

    I dearly hope the Bill can help with this. But no-one I know is holding out much hope. With the exception of a handful of brave, talented and increasingly kamikaze professionals, we’re largely on our own.

  15. Sarah Teather introduced the Green Paper when I was going through the most tumultuous time of my life. My daughter had just been diagnosed with an autistic spectrum disorder and was out of school. The LA was unable to offer any placement for her, but in spite of this, fought against my chosen school. She was out of school for 18 months

    I followed the Green Paper’s progress and submitted feedback. When the pathfinders started recruiting parent reps, I eagerly put my name forward. I was full of hope that the statementing process would change for the better

    With each pathfinder meeting I attended, I lost a little more hope. It became clear to me that nothing was going to change. So much time was spent at meetings designing questionnaires and forms, pondering on typefaces, types of pictures to use, etc.

    Naively I thought that the trials would be about children undergoing statutory assessment for the first time, and following their progress through to its conclusion. But no, all but one of the children selected already had statements. Even worse, the trial wasn’t even of them undergoing Annual Reviews because they’d already had them. The trial population was selected not because they were representative, but because they were in convenient clusters, eg in a special unit.

    It was also clear that the professionals at these meetings were still in the old mindset. At times they forgot that there was a parent at the table. I heard a social care professional lamenting the fact that a parent had requested a personal budget for a respite carer. The social care professional thought it was appalling that she had to fund this respite care as the child had a grandparent who could have provided that care. An education officer said only half-jokingly, “it’s all very designing a new assessment process, but who’s going to tell them we’re not going to give them anything?”

    And parent representation? All decisions were made outside the pathfinder meetings I attended, which consisted only of updates from the various professionals. Occasionally, there would be an opportunity to put a point of view across about whether yet another flyer was parent-friendly! If I had any queries, I would be asked to keep to the agenda and raise them at the end of the meeting. Of course, they were always out of time.

    I have come to the sorry conclusion that the Children & Families Bill will not change things for the better. There was nothing really wrong with the old statementing process – all that was needed was the law to be observed. This will only happen those assessing aren’t the ones paying.

    So what did they discover through these trials? Don’t ask me, I haven’t got a clue, but it was obviously good as they were designated pathfinder champions.

  16. Thanks again for your further comments. CDC’s specific parliamentary and campaigning work on the Bill is directed through both the Special Educational Consortium and the Every Disabled Child Matters campaign, both of which are independently chaired and funded. We recognise that as Strategic Partner it would be inappropriate to hold a lobbying role which is why we channel our efforts through these existing mechanisms. You can view the latest SEC/EDCM parliamentary briefing on the Children and Families Bill, which echoes many of your concerns, at this link: As Strategic Partner we do continue to feedback issues such as the ones you have all raised directly to the Department for Education, including where there are issues of local authorities acting illegally.

    – Helen

  17. Why is it inappropriate for you to demand of the Government that public servants employed to help children obey the law of the land in their daily tax payer funded work?

    I’m confused.

  18. It’s all very well ‘telling’ the Dept for Ed our views, but given they feel able to disagree with properly referenced evidence plus show such clear bias against parents (as evidenced here:, I can’t see what effect you are having by doing this.

    I also don’t understand why or agree that you can’t hold the government to account for their legal duties simply because you are receiving money from them. Is there a clause in the contract that requires you to ignore unlawful practices?

  19. “CDC Policy: We engage with decision makers including local and national government to help shape policy development.”

    “We recognise that as Strategic Partner it would be inappropriate to hold a lobbying role which is why we channel our efforts through these existing mechanisms.”

    How would you reconcile these statements?

    As Starlight McKenzie said in the post above,”I also don’t understand why or agree that you can’t hold the government to account for their legal duties simply because you are receiving money from them. Is there a clause in the contract that requires you to ignore unlawful practices?”

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