Do we need a Positive Behaviour Support Academy for England?

A short post, and in the spirit of making a new proposal as widely available as possible to the intellectual disability community in the UK (and England specifically).

I’m not claiming this as my idea at all, but there is a nice synergy with my recent discussion piece about the idea of Improving Access to Positive Behaviour Support if you want to take a look at that too.

It is also important to say that the proposal document has been put together quickly by a volunteer group and it does not represent the views of a particular organisation. All we are trying to do is to get the idea out there along with some thoughts we had that flesh out the idea to a reasonable level of detail. If the idea is taken up (commissioned?) by someone with power and access to funding, I think the idea of a PBS academy should belong to the ID/LD community in England and not be seen as a proposal from someone or some group in particular. Someone else might well lead the next stages of development of the Academy if it takes off.

Fingers crossed that something will happen!

There is plenty of detail that could be added to this PBS Academy proposal, and I hope that there is the chance for it to be shaped by feedback over time (because that’ll mean it might happen!) and for consultation with all stakeholders. The proposal is shared in its imperfect state in the hope it is useful and helps to provide a focus for a PART of the solution to the Winterbourne View nightmare.

You can download a copy of the PBS Academy paper here.

In the interests of transparency, the main authors of the paper were myself and Prof David Allen but mostly because we agreed to take on that practical role. Direct feedback and ideas for the current version of the paper were also contributed by Peter Kinsey (CMG), Viv Cooper, (CbF), Prof Peter McGill (Tizard Centre), and Bob Tindall (United Response). Many other people also contributed directly or indirectly through conversations over the past few months, but they are too numerous to mention. I hope that this clarifies that the paper is an idea articulated by a number of dedicated people, but it isn’t owned by them.

Youth mental health in the UK - remember the children with intellectual disability and autism

There is interest today in the apparently dire state of child and adolescent mental health services in the UK including a headline BBC News story.

The purpose of this brief blog is to encourage people entering the debate, and those who may join a "task force", to remember that within this topic there is a serious issue relating to mental health inequalities. Various disabilities and physical health conditions are associated with an increased chance that children will develop mental health problems. My focus in this blog is on children with intellectual disability (learning disability in UK health services language), and those with autism.

Our research using data from the ONS Child and Adolescent Mental Health surveys of British children shows that children with intellectual disability are about three times more likely to have high levels of behavioural and emotional problems than children without intellectual disability or autism. Children with autism had even higher levels of mental health problems.

We also know that these mental health inequalities emerge early in life for children with intellectual disability and/or autism. Again using nationally representative population survey data from the UK, we found that these inequalities have emerged at least by the time children are five years of age (and probably much earlier).

Earlier this year, working with colleagues from various Universities we also published data on the mental health of children with autism who also had intellectual disability and attended specialist autism schools. Again, we found higher rates of mental health problems compared to what would be expected for British school age children generally. Also very worrying was that we asked parents (and teachers) whether these children had any contact with child and adolescent mental health services in the previous six months. Only 20-25% of those children who currently had likely mental health problems were reported as having any mental health services contact in the preceding six months.

These research studies are based on large population studies or otherwise large samples. The findings confirm a general pattern of significant mental health inequalites for children with intellectual disability and/or autism, the early emergence of these inequalities, and a lack of access to mental health services for one of the most vulnerable groups of UK children.

Any discussion about youth mental health in the UK must include questions about how best to support this vulnerable group of children, and also how to start with early intervention to help to prevent mental health problems.

Young people with intellectual disability and autism are not a side issue in this debate. One estimate, again from UK population data, is that 14% of ALL children with a mental health problem in the UK will have an intellectual disability.

So, don't ignore these children and young people!