Many children with disabilities in the UK are not getting the help they need. The campaigning group Whizz-Kidz states: “There are around 70,000 disabled children in the UK who are waiting to get the wheelchair that suits them best. They can wait months, sometimes years”. And the situation for children with speech, language and communication needs is equally stark. According to the Bercow report, “The current system is characterised by high variability and a lack of equity. (It) is routinely described by families as a 'postcode lottery', particularly in the context of their access to speech and language therapy.”
A recent Green Paper on Special Educational Needs (SEN) released by the Department of Education takes such concerns on board, stating:
“The reforms we set out in this Green Paper aim to provide families with confidence in, and greater control over, the services that they use and receive. For too many parents, their expectations that services will provide comprehensive packages of support that are tailored to the specific needs of their child and their family are not matched by their experiences, just as frontline professionals too often are hampered and frustrated by excessively bureaucratic processes and complex funding systems.and has a wide range of recommendations.” (point 29). This all sounds excellent, so what exactly is proposed?
The two examples given above, of provision of wheelchairs and speech and language therapy are given particular focus. Specifically, the recommendation is for “the option of a personal budget by 2014 for all families with children with a statement of SEN or a new Education, Health and Care Plan” (point 6). There is an emphasis on bringing together the different agencies that are concerned with children who have complex educational needs, so that educational, medical and social agencies work together. So far so good.
Delving deeper into the document, we find the more specific statement:
“2.41 We have consulted on the introduction of patient choice of any willing provider that meets NHS standards and price for most NHS-funded services by 2013-14. This is likely to apply to many community health services. It will give families choice, where appropriate, from a range of providers who are qualified to provide safe, high quality care and treatment, and select the one that best meets their needs. It will mean that good providers that offer innovative and responsive services are able to grow.”
Note the use of the word “patient” here; although the document talks about “educational, medical and social agencies” working together, the description of the personal budget appears to relate just to health needs.
Not surprisingly, then, the proposed solution has strong parallels with current policies on provision of healthcare, with a focus on outsourcing to private providers. The personal budget is specifically mentioned in relation to provision of such facilities as wheelchairs or speech and language therapy services, which are currently provided via the National Health Service. One can see that any policy that ensures that children get what they need in a timely fashion is to be welcomed, and there is ample evidence that the current system has not always provided this.
The key question, of course, is whether the personal budget will be adequate to give children what they need. All too often, governments have dressed up healthcare policies as providing more “choice”, when in fact they are designed to save money. It is inconceivable in the current economic climate that any extra money will be available for disability and SEN. So everything hinges on whether the personal budget will be sufficient to cover a child’s needs. No doubt the expectation is that competition between private providers will drive down costs so it will be possible to “do more with less”. I hope this works, but I'm not optimistic.
But what about the educational and social aspects of provision? I’m particularly interested in whether the “patient choice” model will be extended from the medical to the educational sphere. Here there is a potential problem. For medical provision, it is argued that NHS standards must be met. One would hope, then, that there will be vetos on spending the personal budget on such interventions as “acupuncture miracle cure” or stem cell treatment for cerebral palsy. But in the field of special education it’s not clear what standards would need to be met.
Evidence-based education is still in its infancy, and in mainstream education there are plenty of instances where government funds have been spent on educational programmes of dubious or unproven effectiveness. Ben Goldacre, in his book Bad Science, documented the way in which Brain Gym programmes were introduced in UK schools, despite being full of ludicrous pseudoscience. Charlie Brooker’s account of this is also worth a read. Though we may laugh at these educational initiatives, they provide a nice income stream for those who are marketing them. (See also, http://wordpress.mrreid.org/2009/06/01/learning-styles-are-nonsense/)
If the plan is to give families a personal budget to spend on special education, there will be plenty of companies who will see this as a fantastic business opportunity. Some may be providing beneficial services, but there is a real risk that commercial companies will be rewarded with government funds for interventions of dubious or unknown value. Suppose your child has severe reading difficulties, language comprehension problems, or autistic features, and the classroom teacher seems at a loss to know how to help. It is easy to envisage a situation where private companies could offer attractive-sounding interventions, in anticipation that the “personal budget” could be used to support these. There are already numerous cases of such fringe interventions, but currently any parent who wants to try them has to find their own funding. In most cases, the only evidence for efficacy is anecdotal. In a few, claims of scientific support are made, but usually when investigated, the evidence proves to be weak. Randomized controlled trials are very rare in the field of education, and where these have been applied to interventions for children’s learning and educational difficulties, results have typically been much less impressive than when uncontrolled studies are done.
Clearly, if we demanded that any educational approach used in schools had to be demonstrated to be effective to a high standard of evidence, the school system would grind to a halt. Education has never been required to meet the standards of evidence seen in medicine. Furthermore, no innovations would ever occur. I’m a great fan of changing this system to one of “evidence-based education”, but I am realistic enough to realise it is not going to happen overnight. And if we do take an evidence-based approach, we need to consider carefully the way in which we measure children’s outcomes: it could be a mistake to have a narrow focus on educational attainment that does not consider other aspects of well-being. But we need to address these issues urgently if we are going to give “any willing provider” the opportunity to sell services for children with special needs.
As an example of the potential pitfalls, it is worth reading a 2008 report of the Enterprise and Learning Committee of the Welsh Assembly It is noteworthy that some of those advising the committee had vested interests in the programmes under discussion: Prof David Reynolds had financial interests in the Dore programme, and evidence for efficacy of FastForword was provided by those who sold the programme, and a professor whose institution had made $5.5 million from royalties. The committee were apparently unaware of independent evaluations of these programmes that gave a much less positive picture, see: http://tinyurl.com/3q4jen9 and a recent meta-analysis of FastForword, which includes studies published prior to 2008 (not to be confused with the Fast Forward wheelchair campaign).
I am not saying that private companies should be excluded from providing special education. Potentially, they have much to offer: being freed from bureaucracy of state-based organisations they have potential to develop new approaches, or to deliver traditional services in an exemplary fashion. But we need to have stringent standards in place when evaluating “willing providers” and ensure there is no conflict of interest in those advising on appropriate interventions. Some providers will see this population as a wonderful commercial opportunity. We need to ensure that limited funds are spent wisely and well.
Of course, this is only germane if a personal budget will be available for educational as well as medical interventions. I wonder whether it will be. The Green Paper is not clear on this, noting merely that “Subject to piloting, this would include funding for education and health support as well as social care”. But even if the piloting supports educational uses for a personal budget, it is not clear which children would have access to this. On the one hand, the Green Paper emphasises the numerous ways in which children currently identified with SEN have poor outcomes. Yet on the other hand it seems to imply that many of those with labels of SEN don’t have genuine problems: “Previous measures of school performance created perverse incentives to over-identify children as having SEN. There is compelling evidence that these labels of SEN have perpetuated a culture of low expectations and have not led to the right support being put in place.” (point 22). And “we intend to tackle the practice of over-identification by replacing the current SEN identification levels of School Action and School Action Plus with a new single school-based SEN category for children whose needs exceed what is normally available in schools; revising statutory guidance on SEN identification to make it clearer for professionals; and supporting the best schools to share their practices." (point 24, my emphasis). Finally, “A new single early years setting- and school-based category of SEN will build on our fundamental reforms to education which place sharper accountability on schools to make sure that every child fulfils his or her potential.” (point 5, my emphasis).
The Green Paper sounds full of good intentions, but I’m cynical. Cutting through the fine language I see a pincer movement to cut costs of children with disabilities and SEN: first, by radically reducing the number of children who will be deemed to need special provisions, and second, by passing responsibility for the remainder over to the marketplace. I fervently hope the recommendations will do good in overcoming the obstacles currently faced by families in obtaining necessary equipment and services, but I have two worries. First, that the profit motive of those in the marketplace might conflict with the child’s best interests, and second that the net impact for children with hidden disabilities will be to reduce provision and then blame teachers for children’s educational failure.
The Green Paper is a consultation document; I'd encourage all readers with an interest in this area to read the document and give your own views: you have until 30th June 2011 to respond.
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This tweet from @martinmckee this morning is very pertinent:
ReplyDeletePowerful warning from schools sector of what could happen if private equity firms move into health delivery in big way http://bit.ly/fga52A
I really enjoyed this post. Had I not been so jaded and cheap, I might have fallen for the programs mentioned.
ReplyDeleteI NEVER thought I would say this, but the least restrictive environment can be a special school, which exists to serve the particular needs of the child. It's "nice" to be around one's non-handicapped peers, but it seems to come at a cost of higher/lower but not appropriate expectations. In America, certain practices are sacrosanct, curriculum being primary.
Things may change in time.
But you are so correct in assuming business gives a hoot about the child's outcome, only the bottom line. Businessmen are NOT educators, nor shall they ever be.
A very useful analysis of the Green Paper. Like Dorothy, I fear the worst - reduced overall funding, fewer children helped, more private providers with no real accountability, and hence more opportunities for opportunists. I also worry about what kinds of difficulties and disabilities will be covered. My own special interest is in maths learning disabilities, and there's almost nothing in the GP about them. The only comment (section 3.35) is that the intervention methods for 5-7 year olds the Every Child Counts programme could be bought by schools instead of being rolled out as part of the general education provisions. Moreover, the intervention has not been evaluated yet, and it's not clear that it will benefit dyscalculics.
ReplyDeleteSo the question is what should we do now?
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Thanks for a great post. As a teacher, my concern is twofold:
ReplyDeleteFirstly, schools are able to plan more effectively for their students if they know how much they have to spend and how long they will have it. This means it is possible to provide specialist training, employ TAs with specific skills and so on.
Secondly - and perhaps cynically - what's to stop a parent from deciding that what Jonny really needs to help his autism isn't appropriate support in school, but a trip to Florida to swim with dolphins?
Some options in special education that HAVE been shown to be better than the alternative - I'm thinking particularly of mainstream education for children with Down Syndrome - are not always parents' first choice. In the Netherlands* where parents have a funding package, parents from lower SES groups tend to choose special schools for their children with Down Syndrome which means they have worse outcomes, while parents from higher SES choose mainstreaming.
ReplyDelete*I may have the country wrong - from a seminar a while ago.
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