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 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.
IAPT and IAPBS
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.