Life is like a box of chocolates, or marmite on toast to the Council for Disabled Children?

This is marmite on toast
Forrest Gump once said that life was like a box of chocolates. Not exactly how I would describe my life, but then even this description might hold more resonance than describing my eternal fight for sometimes barely 'adequate' SEN provision as a choice between 'marmite or jam on toast'.

The Council for Disabled Children in its recent blog post, 'Change, choice, control – and condiments', tries valiantly to describe the potential choices offered by the new Children and Families Bill for the personalisation of budgets. Putting aside the suggestion that their description trivialises parents struggle for any provision, in trying to bring us this new hope, the piece also ignores one essential truth from which all the Bill's Strategic Reform Partners really must never stray :

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. The Bill does not change this.
Many of you might have read our paper on the Bill. If you haven't, please do so! This paper was sent directly to Mr Edward Timpson, Minister for Education, and to the Education Department but I am pretty sure it must have been misfiled as we have heard nothing since. Perhaps we are 'off message' . Whatever, it seems to me that having the voices of ordinary, grassroots parents heard above the excited clamour of Stakeholders and Strategic Reform Partners is hard if not impossible.

This is jam on toast
Was it something we said? Perhaps the truths we have to tell are unpalatable. Truths such as: I had to force direct payments out of the reluctant hands of my 'Pathfinder' by threatening judicial review, that direct payments for SEN are frequently refused because the LA has a block contract for that type of SEN provision (irrespective of whether your child is actually receiving provision under it) leaving parents with no choice and perhaps no toast. With LAs still controlling the purse strings and decision-making, what will really change?

My view is that, in reality, very little will change for parents who will still have to fight LAs (and their NHS services partners) to get their child's 'needs' recognised in the first place. LAs and their NHS partners will still consistently deliver the cheapest possible generic provision under block contracts with no capacity or strategy for the objective measurement of outcomes 

You see it is all about control - but the control is not ours. And of course, it is about money. LAs don’t want direct payments for SEN and will get out of offering them at every opportunity (perhaps by not recognising need in the first place) as has been demonstrated by the poor levels of trialing for Part 3 statementing provision. LAs don't want to lose control of SEN provision to independent therapists who may be frank about a child’s need for support which may lead to requests for more or simply better support. They may also actually quantify and specify this support in their reports as required by law. Whereas, of course, presently, NHS therapists are frequently told not to so by LAs.

This is a child
In reality, 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 and reported in our paper)  or they face 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? Well, of course, it doesn’t do any of these things. And we should all say so. LOUDLY 

The focus of any reform must be the protection of 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 in the child’s best interests which is a fundamental requirement of the Convention. Parents will, therefore, continue to fight to prove their child's needs and thus for even the smallest of toast crumbs.

A wordsmith parent I know, has her on views on the analogy. She says:

Great work, the cafe analogy. Spot on. At least it is if we're actually talking about a cafe in, let's say, North Korea. Where people are queuing hundreds of meters out of the door every day, most of them waiting stoically for hours to get miserly scraps that won't keep starvation at bay, let alone meet their nutritional needs. All served up by shrivelled sociopaths and their terrified accessories who think about service delivery in roughly the same way a dog thinks about a lamp-post - and who love to make a special example of customers who question the paradise of choice on offer.
Another parent puts it this way:

 If we're going to run with the analogy, I can make my own, perfectly good, toast and coffee. I can even make my own bread to make the toast with and I have a bloody good stash of jam. Eggs Benedict is a bloody faff, though, no matter how delicious, and I'd love for someone other than me to get all those pans dirty and do the bloody washing up, afterwards, because I end up too tired to bother with the rest of the day, otherwise.

On unlawful practice, one parent reports:

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 are allowed to think they can choose whether to comply with the law. 

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 meet those “needs” do it legally and morally.

Any more thoughts???


  1. I have also been advised to move away but why should I? This is the town where I was born, this is the town where generations of my family have lived and work. Why should I leave this place, a place that is so entwined with my identity. There again, I hate my town for the way it has treated me and my children so perhaps I should move away but where do I go?

  2. Thanks for your comment.

    I understand where you are coming from. Why should parents have to uproot? Why should are children have childhoods like this? Moving from school to school or place to place because of a failure to put proper, effective provision in place.

    This has to be more financially expensive for the state in the long run so it makes no sense.

  3. That nailed it.

    Well, not quite. It’s not only about control, it’s about expertise. Reports from Warnock onwards have flagged up the issue of mainstream teachers not being trained to teach children with SEN. The recent Kennedy report raised the issue of GPs not getting paediatric training. The Munro review recommended that social workers should know about child development. No wonder children with disabilities and additional educational needs are seen as a ‘problem’.