Tuesday, 16 September 2014

Some additional context for the proposed PBS Academy for England

The content of this blog is mine and not the responsibility of any of the other contributors to the proposal for a Positive Behaviour Support (PBS) Academy (see here if you have not yet read the proposal).

There has been a lot of interest in our publicly posted proposal/suggestion for a PBS Academy for England. Some interesting questions, including several relating to issues we touched on in our short paper. However, it is clear that for some readers the proposal is not yet linked with other aspects of context that would be helpful. Specifically, some have asked what PBS is or have wondered what the Academy authors mean by PBS. Others have asked what the roles of various professional groups might be. Finally, many people have been in contact to say that they have been working locally on projects and ideas that chime with much of what is said in the Academy proposal. 

This final class of responses reinforces our point that much of the Academy’s role would be to connect existing excellence and resources within the framework of carefully defined quality and competencies. That is, we’re not simply proposing a co-ordinating role. Instead, we believe that clear standards and competencies need to be established and that then local/regional work that meets these criteria, or aspires to, would be facilitated in communities of practice across England. The Academy would encourage/support all excellent practice. It would also have high standards – people with learning disability and their families deserve nothing less. My personal view is that this means some people/groups currently professing to be PBS experts or PBS competent may not meet the Academy’s standards. Basically, there has to be a line… The proposed Academy will need to be a mark of quality that various stakeholders can trust. Not an easy job, but it needs doing.

What is PBS?

In trying to influence the debate, some of the UK’s leaders in PBS put together a series of articles in BILD’s International Journal of Positive Behaviour Support in December 2013. One of these papers focused on the defining features of PBS. It did not really say anything new, but it was intended as a clear description of what PBS is about. Many organisations around England received a copy of the special issue of the journal, and so you may have access already to all of the articles. The link to the special issue is here. If you cannot access the journal, but would like to read the paper on what PBS is, you can email me (R.Hastings[at]Warwick.ac.uk] or any of the other authors.

Our PBS Academy proposal needs to be read in that context of how we see PBS. We did not re-state definitions in our proposal and perhaps we should have done. We have, though, already been clear about a definition of PBS for the UK. One point is that unless you are delivering (have competencies in) all dimensions of the PBS defining features, you ain’t “doing PBS”. The defining features contribute to an integrated framework – it is not possible to pick and choose to say (for example) that 7 out of 10 will be good enough.

The roles of various LD professions

I hope that we already were clear enough in the proposal that working alongside people with LD and their families/carers would be a founding aspect of the PBS Academy. Granted, there are again few details about how that would be achieved and such detail would have to be developed early on. At this stage, we had some family/carer input to the proposal but none from people with LD.

Interestingly though, various professional groups in the LD community in England have wondered about their role in a PBS Academy. My answer is actually to take one step backwards to a broad framework (sometimes, I’ve grandly called this “theory”) or model that links together the evidence relating to challenging behaviour. I’ve blogged about this before, arguing why it is important for people to care about “theory” in generating high quality services to support people with behaviour that challenges. Check out my What Use is Theory blog.

It is clear from a working model of challenging behaviour that PBS plays a central role because it is built upon much of the existing evidence about the inter-personal and broader environmental contexts in which challenging behaviours emerge. However, it is not the full story by any means. For example, there is good evidence that physical pain, co-existing mental health or developmental disabilities (e.g., autism), and various genetic syndromes are associated with increased chances of people engaging in behaviours that challenge. These associations mean that a comprehensive service supporting people with challenging behaviours will need strong medical assessment and management of health issues that may be causing or exacerbating challenging behaviour. I personally would not want to see PBS kicking in until such health causes can be ruled out.

We also argued that a lack of communication skills is associated with more challenging behaviour. Speech and Language Therapists would clearly have a role in helping to develop these skills. A further example is the association between challenging behaviour and a lack of meaningful activity in people’s lives. My understanding would be that Occupational Therapists would have competencies relevant to this issue. Psychologists would hopefully have skills to deliver non-pharmacological “treatment” of underlying mental health problems (e.g., through various evidence-based psychological therapies) associated with challenging behaviour. Learning Disability Nurses will also have competencies in many of these areas I’ve used as examples.

My point is that a multi-disciplinary group of people is needed, working to a shared model of challenging behaviour, to be able to deliver excellent services. This is not the same thing at all as saying that everyone needs to be “doing PBS”. Not everyone can develop the depth of competence in PBS to lead on that aspect of the challenging behaviour model. Specialists (from whatever professional background) are needed in PBS roles. Those PBS practitioners need to be a core part (probably the largest part) of all multidisciplinary challenging behaviour teams.

Another important point to make is that the Academy proposal is not just about supporting adults. We were clear that challenging behaviour has its roots often earlier in life, and so significant work is needed with a focus on children. Explicitly, early intervention services are also needed that are informed by the same basic model of challenging behaviour.

Back to the PBS Academy proposal

So, please read the Academy proposal alongside those two other aspects of context – what PBS is, and also how PBS fits into a wider model of challenging behaviour. I hope that the whole package, with the PBS Academy proposal at the centre, offers a way for all stakeholders in the learning disability community to come together and to make something significant happen!

Thursday, 28 August 2014

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.

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.

Wednesday, 20 August 2014

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!

Wednesday, 18 June 2014

Improving Access to Positive Behaviour Support (IAPBS)

I’ve been mulling over for a few months now the issue of what the solutions might be to the problem of moving people with a learning disability from Assessment and Treatment Units (ATUs) in the UK to community based services closer to home. I’ve also had several interesting conversations with people connected to the work relating to responses to Winterbourne View and more broadly with people working in the field of Positive Behaviour Support (PBS). Although I do take responsibility for the ideas presented in this blog, it is important to say that most ideas take shape in communities of people interested in and discussing topics together. Ideas, do not come from individuals having flashes of inspiration (however good or terrible these turn out to be).

I do think it is time, however, to share some views on the conversations I’ve had and what they mean. I’m also giving them a name – IAPBS (Improving Access to PBS). Will it catch on?!

The Problem(s)

The problems that people with learning disability and challenging behaviour currently experience in the UK are well-documented. Shocking stories about poor care and the lack of local high quality supports are not only personally devastating for those involved but the responses to these cases just seem wrong or “inadequate”. We have also seen numbers in ATUs rising – quite the opposite to the plan (and promise), which was to move people out. Research over the years already provided warnings about the services received by people with learning disability and challenging behaviour, and we recently synthesised this research systematically.

A core issue that strikes me, especially looking at the recent ATU data (which show large % reasons for remaining in ATUs as a “clinical decision”), is that challenging behaviour is a domain under strong medical control in the UK. I do think that existing research evidence highlights a core role for medically trained individuals as a part of a multi-disciplinary team, but challenging behaviour is primarily a social and psychological “problem” and not a disease of the mind or body.

Campaigners have been very good at pointing out the current problems in relation to challenging behaviour services in the UK, and I know many have been suggesting solutions too. I have heard some of these solutions. A worry I have is that these solutions are as yet not co-ordinated. In addition, many of them are not linked to a delivery mechanism that people outside of the learning disability field will understand. Therefore, I’m not going to present a fully formed and costed plan but I am going to suggest a model that may be worth exploring. This is also not a solution to where people can be housed in their local communities (which, I recognise, also needs to be thought through) – instead, it is about their access to high quality supports. In fact, I would argue that we must solve the issue of access to high quality supports BEFORE simply moving people back to their local areas.


My core suggestion is that either we extend the Improving Access to Psychological Therapies (IAPT) system in England to encompass PBS, or that we replicate the general ideas within IAPT to deliver a large scale PBS infrastruture. Scaling up is actually the key problem when it comes to making PBS available to the several thousand people in ATUs but also to the thousands more people with learning disability whose behaviour challenges (estimated to be 10-15% of the population of people with learning disability).  At present, there are such a wide variety of solutions to challenging behaviour and a lack of focus on the main evidence-based approaches. This means that people with a learning disability and their families face the proverbial post-code lottery. National (England, and/or UK) action is needed and IAPBS may be an answer.

Why IAPT as a model? I see two driving forces behind IAPT, and both have parallels with the current problems around challenging behaviour. First, mental health problems were recognised as not (just) about medical understanding and treatment. Second, to invest in new services an economic case had to be made. IAPT provides access to evidence-based psychological therapies now for a wide range of mental health problems and has been extended to services for children as well as adults. The invest-to-save case was built initially on projections about savings in the UK benefits budget if adults of working age with mental health problems could be supported to stay in work, to have less time off work, or indeed to get into work in the first place. Providing evidence-based psychological therapies was the solution.

IAPT also has other features that I think are directly relevant to our current situation in relation to learning disability and challenging behaviour. First, there is coherence in terms of what therapies are offered – evidence based psychological therapies. Not just any therapy, and much less of the (what I consider to be dangerous) approach of eclecticism. Second, the competencies needed to deliver these therapies and the more general therapeutic skills needed to work with people are very clearly defined. For example, there is a distinction between high intensity trained therapists (who do the more difficult stuff), and low intensity trained therapists. Third, because competencies are defined clearly training programmes train people to “graduate” with the agreed competencies. Training contracts are also placed with expert institutions (mainly Universities I think). Fourth, there is also a national system of data gathering used throughout IAPT services which enables local and national progress to be monitored/audited in addition to the benefits of using data to inform therapeutic decisions with individuals.

An Initial Vision for IAPBS

My question in this blog is pretty simple. Can we use the IAPT model and infrastructure to deliver improved access to PBS? Many people will no doubt point out problems with this suggestion. However, we need action fast. We also need to ensure that people with learning disability and their families receive the highest quality evidence-based support for challenging behaviour. This support is needed now. To me, this means moving forward with a large scale delivery model that is established, that commissioners and service providers already understand, and so that could be got moving quickly.

PBS is not quite the same as many psychological therapies delivered to individuals or groups. For example, it is more of a coherent framework, rooted in behavioural theory and methods, and based on evidence about why challenging behaviours occur. In addition, PBS in many cases is likely to take longer than 8-12 one hour sessions to deliver for an individual with challenging behaviour. PBS is also likely to be delivered by a group of professionals working together with families and with people with learning disability themselves. However, I am not suggesting that these aspects are lost. I am talking about a delivery system and some ideas for how we can move forward much more quickly than we seem to be.

Some of the key pieces that need to come together quickly to then deliver IAPBS, are:

1.       Agreement about the evidence base. NICE is currently developing guidance on challenging behaviour in people with learning disability. I cannot see, considering the research evidence out there, that the Guideline Development Group for this work will be able to conclude anything else than a recommendation to use PBS as the main “treatment” and model for services.

2.       Agreement about the definition of PBS. Work has been ongoing relating to this in the UK, and a series of papers published in a special issue of the International Journal of PBS in 2013. Importantly, as I keep saying (apologies for repeating this), these issues of PBS definition start with an underlying model of why challenging behaviour occurs. It all starts with “theory”.

3.       The competencies needed to deliver PBS. Again, work on this is currently in progress. Explicit in this work is the need to define core behavioural competencies and all the associated professional competencies and values that go with these to define PBS. In addition, competencies are clearly needed at different levels (from expert consultants and supervisors supporting and training other staff and also dealing with the most complex cases, to the competencies needed by front line support staff in various settings, and also competencies for family members).

4.       A large scale training programme. Based on a nationally agreed competencies framework, there need to be training contracts funded with recognised expert organisations (similar to those who have been used to delivering IAPT training contracts). Initially, such a training programme could be focused on up-skilling, refreshing, and bringing into line with a nationally agreed PBS model, those professionals who already “market” themselves as PBS experts. This could happen quickly with dedicated resources. Accreditation of training and competencies is important so that commissioners can move towards only commissioning services working within the nationally agreed IAPBS system. In later years, an army of newly trained people would be needed to support the delivery of IAPBS.

5.       Service design. In some ways similar to IAPT, a range of different services is needed to deliver a full set of supports to people with learning disability and their families. For example, we know we need early intervention/prevention models working directly with young children but also providing skills to their families. We also need ways of screening for/identifying problems as they start to emerge (at any time in a person’s life) and associated early response supports. Then there are various levels of supports needed when significant problems have emerged. These may involve short term work from expert PBS professionals who carry out a functional assessment, design a PBS plan, and monitor outcomes. At the extremes, there may be a small number of cases where individuals (and their families too?) need to move out to a special place for assessment, design of “treatment”, and then “discharge” back to their local community. This last point does suggest a role for ATUs, but much more locally based and as a part of a clear model for services. Most importantly, all services would be working to the same underlying model (PBS) and the same people with expertise would likely be involved in the delivery of several aspects of a local/regional service. A vision for joined up services (joined up by a working model, and by the same competent professionals) is something families have been asking for. If you want to think about this ATU point and how it might work locally IF linked to other services working with the same underlying PBS model, then take a look at this research paper from Iowa in the USA [you should be able to download the pdf for free]. It is rather too scientific to make my point perhaps, but you can get a feel for what is going on in the inpatient facility – and by the way, average length of stay in this facility was 10 days (range 4-15 days), and two thirds of “patients” had a 90% reduction in their challenging behaviour or more. That’s proof that assessment and treatment services can deliver high quality and effective supports to people with learning disability and challenging behaviour. Also, note that this is NOT a medical facility – in fact, there is no mention of medical doctors as a part of the team working there.

6.       Systems for data collection. Some data collection as a part of PBS will be bespoke to an individual and their situation (part of the point of an individualised functional assessment/analysis). However, like with IAPT, a national system of at least outcome measurement could be used to increase accountability in the system. Commissioning could also shift to include aspects of direct outcomes (e.g., improvements in quality of life and reductions in challenging behaviour) if such a data collection were to be implemented. I should also mention research at this point – research on the outcomes of IAPBS would be crucial to ensure further development and testing of innovation. Focused UK funding support for applied learning disability research would be so good to see.

I’m no economist, but I recognise that it will cost money initially to realise an IAPBS vision such as that outlined here. I can also see that considerable savings are possible. We spend an awful lot of money on ATU placements at present. What do we get in exchange for this? Imagine how much cheaper it would be to have average 10 day placements (Yes, still at very very high cost but maybe only for 10 days and not months or years) in ATUs. If we get prevention right, more children and young people with learning disability in particular should also be able to stay with their families in their local communities – better for cost, and more importantly for quality of life for all concerned.