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.

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.

13 comments:

  1. Great blog as always Prof Hastings. Thank you for your insight and ongoing commitment to this cause. It is extremely influential.

    In terms of the large scale training program you mention in this blog, have you considered an online training format for the delivery of this training?

    In terms of scaling up, consistency and standards of practice, this would seem like an extremely scalable model. Obviously, such an online format would be limited to the delivery and testing of the theoretical content but this could easily be balanced with a clear competency based model supervised by professional behavour analysts who once freed up from the training delivery hours could achieve this hands on training more readily.

    This training model already exist in terms of the Registered Behaviour Technician / UK-ABA competencies project and the PBS competencies extension as I'm sure you know. All that is lacking is the online platform and a selection of committed professionals to make this happen.

    I have been thinking about this for a few years now and have in the interim built the required online platform for large scale implementation - OpenABA. I have done this for close to nothing and the ongoing running costs would be minimal i.e. a generous estimate of £1000 per 2,500 users per year. My goal is to make this available for free and have no commercial interest in the site at all. I have also gained commitments from about 25 people who are willing to contribute to the content of the site.

    I would be very interested in your thoughts on the above and as to whether you or any of your colleagues would be interested in becoming involved in this / helping me to co-ordinate this project.

    You can get a quick overview of the site features at the following address. https://www.youtube.com/watch?v=fpwNkEdM7e4

    Please note that this video was cobbled together before putting the kids to bed one evening so is not representative of the level of professional finish of the site itself! Also, you will have to put up with my Irish accent!

    Look forward to hearing from you and keep up the good work.

    Darragh O'Regan
    BCBA, Ireland
    darraghz@gmail.com

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  2. Further to my post above, here is a link to a google doc on the OpenABA project -

    https://docs.google.com/document/d/1PHe3wH6euI8nXF2J5_rIM0KfZ9pfUllUp4SFjJNqpWM/edit?usp=sharing

    and another link to the google doc where I am planning the instructional content based on the RBT curriculum.

    https://docs.google.com/document/d/1r5e6-3siJc-u17ayrxoZvHg_Rk2KR9XZfSHobX0SmFw/edit


    Look forward to hearing from you.

    Darragh

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    1. Hi Darragh

      Good questions re scalability of training. I suspect you're right that any larger scale implementation of PBS across the UK and elsewhere, co-ordinated in at least some way nationally, will also need technology-based solutions to training and "testing" of competencies.

      The first step is very much to work up a national agreement about PBS competencies and at all relevant "levels" of competencies to support a comprehensive and seamless PBS service. How to deliver training is then key! There are already PBS training course available online, but the key question for me is an agreed competencies framework against which all training can be judged and developed.

      Richard

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  3. As ever Richard, this is a really interesting and well thought-through blogpost. As you say, it's good to see so much thought going into new ideas around both how to dismantle our current system of ATUs (as an aside, not sure this is really the right term for what a lot of these places do, but anyway), but crucially how to build new systems of supporting people effectively to stay in their local communities. It's worrying to me that these ways of supporting people have been reducing drastically in recent years - one imperfect indicator of this is that the number of adults with learning disabilities getting local authority support from a professional has dropped by almost half, from 43,810 people in 2008/09 to 22,400 in 2012/13 (RAP Table P2F).

    I also think your point that the medical/psychiatric domination of service responses is misplaced is really important (although psychological domination would bring its own problems!).

    I think the IAPT model is an interesting one in terms of how it was set up, although there might also be some cautionary points here as well:

    1) IAPT was set up as a national programme, to start off with somewhat independently of local health structures, with a ring-fenced budget and separate, national structure for oversight. I think something similar would be needed for the programme you suggest, rather than relying on local areas to get this up and running. With the IAPT programme, over time my impression is that this has been diluted, and for good or ill local commissioners are much more influential. There's also a bewildering array of IAPT providers, and whether these are NHS or private, and how many providers there are in a single locality, varies hugely from area to area.

    2) As you say there was an economic rationale presented for IAPT, based around keeping people in employment and getting them back to work more quickly (so picking up people in the relatively early stages of depression or anxiety). The paid employment rate for people with learning disabilities is so pitiful (7% of working age adults with learning disabilities known to local authorities in 2012/13; ASC-CAR Table L1) that a different economic rationale would be needed. Although the government says it accepts invest-to-save arguments for early intervention (e.g. Graham Allen's report https://www.gov.uk/government/publications/early-intervention-the-next-steps--2 ) there is precious little evidence of commissioners or providers doing it.

    3) One of the really encouraging things about the IAPT approach for your idea is how people can get into the IAPT service. Referrals can come from anywhere, or people can self-refer without having to get a professional's approval. This could be really helpful, although it would be important to ensure that such a service for people with learning disabilities was equitable (both in terms of it being easily accessible to everyone, and in terms of not just ending up focusing on more 'obtrusive' challenging behaviours).

    4) The collecting of standardised process and outcome data and its collation nationally. The IAPT programme does require the collection of A LOT of data rather frequently, which I think is felt as burdensome and is not always used, but a carefully streamlined way of collecting obviously useful data reliably could be really helpful. Certainly local IAPT services pay careful attention to their outcome targets set from the centre, but I think they're coming under a lot more pressure from local commissioners to focus on things like waiting times rather than outcomes.

    5) Within IAPT there has been very tight control from the centre over the content of the training and which interventions are 'allowed', although I suspect there's more variation in the way IAPT therapists actually work than is prescribed in the manuals. Presumably a similar level of tight control and manualisation would be needed for IAPBS?

    1/2

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    1. Thanks Chris, and great additional thoughts on this. I've certainly not fully thought it all through, but your responses suggest that at least two people might think it is worth exploring - potential pitfalls and all! Some quick further "responses":

      1. LA support from professionals - you indicate this is an imperfect measure, but I'm not really familiar with what this statistic maps onto. Such a large change though does indeed seem concerning in terms of access to professionals with expertise.

      2. Medical vs. psychological dominance. Conflict of Interest statement here: I guess I am a psychologist. However, I agree that a professional dominance would bring its own problems. My personal preference would be for dominance defined by evidence and also by a shared model about why/how challenging behaviours come about. These indicate a shift away from a medical model to me, and an indication that other competencies across a range of people from different professional backgrounds should be more "dominant". This isn't an argument for eclecticism though, because I think in many ways that is what we have - an eclectic body with a medical head?

      3. I do have in mind that some kind of national "project" is needed to get us to the point that high quality services are delivered locally so all current and future people with challenging behaviour can be properly and effectively supported in their local communities. That's partly why I'm wondering about either mirroring the IAPT core idea or even using the existing infrastructure somehow. Your points then about how IAPT was set up and continues to work are very interesting indeed. Any discussion of IAPBS would need to not only look at the rationale for the model (i.e., the good ideas!) but also learn from how IAPT has worked in practice.

      part 2 of response to follow...

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    2. here's the follow-on:

      4. The economic case - indeed, a difficult one but it does have to be solved. Agreed that the same argument as IAPT won't wash despite potential arguments that this mechanism of having work could work at the level of people with LD themselves, but more significantly at the level of parents' participation (parents of children and adults) in the workforce. Perhaps then the work-related savings will contribute but won't be primary. Invest to save - of course, a great idea but I suspect the returns have to be unrealistically quick. So, could there be an economic model around rapid change focused initially on the £half a billion spent on the placements for those in ATUs - moving that around fast to get IAPBS kick-started?

      5. Data collection - you can't convince a researcher that data collection and an outcomes focus is a bad thing however much people whinge about it! Seriously, the data have to mean something though. This might be at two levels at least. First, motivating for professionals/teams, people with LD and their carers/families. Whatever is collected needs to help people see progress or to change practice when there is little progress. Second, outcomes need to have "currency" - and by that I mean delivering good outcomes is connected to commissioning. If data were also collected from referral point onwards, there would be a built-in contingency to deliver short "waiting" times otherwise overall outcomes would be poorer...

      6. Tight central control. Very appealing, especially to someone with elements of my personality. Seriously, this is partly my link to NICE. As far as I understand it, services in England and Wales should follow NICE guidance. We will have a NICE guideline soonish on challenging behaviour in people with LD. This ought to change the landscape for LD services, or start to (a new guideline on mental health in LD starting soon as well, perhaps more to come). We've been complaining for some time that people with LD have been left out of this sort of national guidance development. Well, now it is happening and LD services need to get their act sorted. People with LD and their carers will be able to wave NICE recommendations in the face of services and commissioners and ask for evidence-based and recommended supports/treatments. So, it's wake-up time!

      Many thanks for making me write a second blog in response! Why are you up so early anyway - same question to me I suppose?!

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    3. Really enjoyed reading this blog. RE: Item 4: The Economic Case Martin Knapp might be a great person to look into it.
      (http://www.lse.ac.uk/researchandexpertise/experts/profile.aspx?KeyValue=m.knapp%40lse.ac.uk)

      The document he co-edited with David Mcdaid & Michael Parsonage on the Mental Health Promotion - The Economic Case for Early Intervention was brilliant and very relevant here.
      (https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215626/dh_126386.pdf)
      Perhaps a similar analysis could be done?

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  4. 2/3 (as it turns out...)

    There are also some things to think about in applying the IAPT model to supporting people with learning disabilities:

    1) Whether to try and bolt on IAPBS to IAPT or not. IAPT obviously already has an existing structure and it is currently trying to expand its range (to children, for example, or to people with psychosis and bipolar disorder). But despite being theoretically accessible to people with learning disabilities, IAPT hasn't shown itself to be particularly hospitable to people with learning disabilities (although there is some variation around the country (see http://www.learningdisabilities.org.uk/our-work/health-well-being/improving-access-mental-health/?view=Standard ).

    2) Following on from this, as you say there are also issues that the nature of IAPBS work might be quite different. IAPT works on a short-term intervention model, and IAPBS might need more of a 'caseworking' model, where people and families don't have to count as a new referral every time they want some support? Also, would IAPBS need to have a more active 'early signs' approach rather than the reactive model of IAPT?

    3) IAPT was set up as a huge enterprise (in the last quarter of 2012/13 over a quarter of a million people were referred to IAPT and over 150,000 entered treatment http://www.hscic.gov.uk/catalogue/PUB11365 ) and the scale of IAPBS would be much smaller than this (assuming around 400,000 children and adults with learning disabilities known to services and a 15% rate of challenging behaviour would result in around 60,000 people with learning disabilities in total needing an IAPBS service, although early intervention work would need to be done on larger numbers of people and there are an additional 600,000 adults with learning disabilities who are not known to services). I think this isn't necessarily a problem in that it might be easier to set up a focussed, national system, but there would be the usual tension of how to get really local and useable IAPBS services versus maintaining good supervision and quality control.

    4) How would IAPBS interact with other services, and how would decisions be made about whether IAPBS is the most useful way of working with the person? Behaviours labelled as 'challenging' might be a function of mental health issues (would IAPBS also include psychological therapies for these?), trauma, and physical health problems and/or pain, for example. Similarly, how would IAPBS fit with parenting support programmes (some of which also have some evidence for their effectiveness)? I don't think these are at all arguments against an IAPBS programme, just that they need to be thought through carefully to avoid turf wars, buck passing and yet another uncoordinated professional turning up on a person's doorstep.

    5) Although you pooh-pooh 'eclecticism', for IAPBS to work it's really important that the programme effectively engages with people and important people around them (for example families) as partners in the process. And I know that PBS says it does this if it's done properly, but I'm not sure this is always the experience that people and families have, so I think this would have to be a central feature.

    6) I think your point about the proper role of inpatient 'crisis' services is really important, but I'm conflicted in what I think about it. Part of me can see that having a place of safety or refuge for people to go to at times of crisis is important (as there are such services for people with mental health problems at times of crisis), and I'm sure that many (maybe all???) current ATUs argue that this is what they do. Yet this is also what terrifies me - retaining or developing 'good' ATUs as part of a system of supporting people is the rationale that led to the current mess, and what's to stop it happening all over again?

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  5. 3/3 (but short)

    7) Finally (you'll be relieved to hear) there's the 'sticking plaster' question. IAPT can be argued to be a sticking plaster over the bigger social and economic determinants of people's mental health difficulties, patching people up so that they can return to economic productivity. I think this argument is a bit too easy (and sticking plasters have their place), but there is an issue for IAPBS that could be important for its effectiveness, in that to be really effective long-term IAPBS would presumably want to engage in issues such as employment and meaningful activities for the person, fulfilling relationships and generally supportive environments. How to do that, while retaining the advantages of an IAPTish sitting outside existing systems, is a challenge.

    Thanks again Richard for such a great blogpost.

    Chris

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    1. Is there a word for comments on blogposts crossing in time? A new phenomenon that needs a descriptive term perhaps...

      Love all the additional questions, and again I think this illustrates worth exploring with caution? I suspect what this means is the need for a separate IAPBS project at national level that is distinctive is needed: access issues, especially entry criteria like covering all challenging behaviour not just the aggressive stuff that worries services most; prevention as well as response to significant problems, and crisis; longer term intervention needed; total number of people with LD involved. My anxiety is that this then weakens the idea that using an existing delivery mechanism might be an advantage. Perhaps we can just "adapt" the model rather than re-invent the wheel. I have two criteria in mind, as mentioned - the need for speed, and the need to persuade people outside of LD who just don't get what we're all on about!

      Working in connection with other "treatment" approaches is a thing to be solved, but this is about designing how things look and the fit to other "approaches". Some kind of shared model though is one of my core arguments. For example, early intervention might well focus on behavioural parent skills training (as recommended by NICE already for kids generally - such as Triple P and Incredible Years). This could be enough to prevent the emergence of problems early. IAPBS professionals/services would also need to be able to access specialist supports to address bespoke issues (e.g., they might well need specialised prescribing support around psychoactive meds, also pain reduction specialisms). This is a perfect illustration I think of the additional power a good IAPBS service could offer. At present, a pain professional for example has no expertise in LD and challenging behaviour. A careful analysis, with supporting data, pointing to pain reduction as a likely function of behaviour might open health services support that is hard to access right now!

      part 4 response to follow...

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    2. following on:

      I blame eclecticism and its ills on professionals certainly not on families or people with LD themselves. In my experience, they (non-professionals) are much more focused on what they want to achieve. The most important point is what you say though - PBS done properly with the right values clearly driving the work, will involve families and people with LD as partners in the process. Being more community focused will enhance this - families for example will probably be more likely to continue to be the main support for people if they're not farmed out to out-of-area placements. This does reinforce the need for making sure of high quality delivery (central control again comes up?).

      I understand your fears re keeping some kind of ATU/place of safety aspect to the system. I share this too. At present, I see these standing outside of a larger and more connected overall approach to challenging behaviour. Until the broader model is sorted, I'd say having ATU type services is far from ideal. The function of assessment and treatment is important though. Mostly that should be delivered in community settings better (reducing the need for "inpatient" places). However, I suspect that the proper A&T function might also need physical places to be done. Probably a new name will be needed for these places though given the history (and not "crisis" units!).

      Sticking plaster point is also important. Two levels here. In general, IAPBS could be a model that could be extended (like IAPT has been) to other LD service areas. So, not sticking plaster but "let's start somewhere". The second level is that, at least for people with challenging behaviour, good PBS should usually deliver reductions in CB but should ALWAYS deliver change in overall quality of life - just the things you mention: employment/meaningful activity, relationships. This is the heart of the paper we wrote in the IJPBS special issue about why challenging behaviours occur that might be used to reflect on how services need to be designed to respond to those points.

      Thanks again Chris

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  6. Christine Mahony20 July 2014 at 11:53

    This blog could hardly be more relevant to my personal circumstances. I have just had the most awful fight with local social services to get PBS consultancy as a service written in to my son’s package for adulthood. He will be 18 in November, and has autism and severe learning difficulties, with episodes of challenging behaviour. I just got it confirmed in writing from them yesterday - we've got PBS supervised by a BCBA in his package.
    It was daunting to have to present the case to the decision-maker – an official who had not met my son or understood the nature of any of his difficulties, who knew little about autism, learning disability or challenging behaviour, who was working on a very tight budget - and who had never heard of PBS.
    If only PBS was already embedded in services across the country as best practice for learning disability and challenging behaviour. But it would need to be properly supervised PBS, and not a watered down version. It's very good to know that people are at least thinking and talking about this, and how it might be achieved in practice.
    I’m hopeful that the forthcoming NICE guideline on Challenging Behaviour will make a positive difference. But as I’m in Scotland, I think SIGN (like a Scottish version of NICE) would have to produce their own guideline to get large numbers of Scottish professionals to take notice. Perhaps I’ll write to SIGN and suggest this, once the NICE guideline is published!

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