What would Jim have said?…

I have been trying for months to find the time to post my thoughts on all the news and discussion around Winterbourne View, among many other things. I was prompted into action (well into deep thought… – action took a bit longer!) by Jill Bradshaw’s comment on the Tizard Facebook page just before Christmas that Jim Mansell had already said it all….twice!  Many other people have since repeated this fact with evident frustration. This week Jim has been mentioned in many tweets following the Guardian coverage of the story of the sad case of Connor Sparrowhawk.  And it wasn’t just about supporting people who had been in many cases forced into displaying “challenging behaviour”. Jim had many wise words to say about improving services for people with intellectual disabilities more generally. The last thing we published together was our book “Active Support: Enabling and Empowering people with intellectual disabilities”, in which we attempted to bring together almost 40 years of research and experience on the lived experience of people with intellectual disabilities and on what we know is needed to  improve their lives (through improving the quality of the support they receive).

Most of the discussion in the media following the Winterbourne View scandal has been about services for people with challenging behaviour and the importance of positive behaviour support. I would like to argue that whilst  this is extremely important, it is actually a secondary issue ….  We need much greater focus on the quality of services in enabling and empowering people with disabilities more generally so that specialist challenging behaviour services are only needed for the very few.

United Response, with the Avenues Trust and myself at Tizard, are just about to publish a short paper in which we elucidate the links between Active Support and Positive Behaviour Support – I personally believe that it is not possible to provide good positive behaviour support (i.e. that meets one of the core elements of PBS, to improve quality of life) without staff having the skills and knowledge to enable and empower people rather than controlling and simply caring for people. I also firmly believe that it is unfair to staff  (and perhaps even unethical) to expect them to work with people without giving them all the skills they need to do so. Before training staff in positive behaviour support and asking them to implement positive behaviour support plans, staff should be trained and then supported through practice leadership to enable people to play an active role in their own lives, to experience real choice and control and to grow in independence even if that is only a tiny step at a time, irrespective of the degree of disability or the presence of extra problems. When I train staff I describe active support as a zero rejection policy – NOONE is too severely disabled, too autistic, too challenging, too epileptic or too anything else in order be involved in their own lives. Everyone can take part in all aspects of their own lives in some way (might be quite small steps for some people) and be in control if staff are skilled to support it.  In fact, those with the most severe disabilities and the most complex needs, need the most skilled support in order to maximise the opportunities around them.  Giving people control over their lives as much as possible, but at the same time supporting them in decision making, helps to reduce challenging behaviour, as does having something meaningful to do with positive approaches and expectations.

However, staff also need to be able to communicate with people using alternative and augmentative communication and to provide environments that are as easy as possible for people to live and work in – especially when supporting people with autism, where the SPELL framework is helpful.  We also know that it is also impossible to provide this type of person centred action well in larger settings – too many agendas to consider. Staff practices and attitudes are also influenced by the environment they work in – I have seen time and time again how hard it is to even provide the classroom based training, never mind the  hands on training and implementation of active support in services that are by design “institutional” – larger or clustered environments, often isolated or separated in some way from the rest of the community. In my experience anything larger than about 6 – 8 people makes it difficult for staff to really think in a person-centred way and to do a good job – having lots of staff around does not necessarily help as they tend to get in each others way and talk to each other.

Having a person-centred plan, a behaviour support plan and even a personal budget is not enough if the staff who support people do not have the skills or the motivation to enable and empower people.  A personal budget, providing it is properly managed, helps people to have more autonomy around where they live and who they live with and who provides them with support but their ultimate experience is only as good as the support they get. At the minute this is effectively left up to chance unless people have the personal funds to train their staff.

So what has spurred me on to write something now? well partly sheer frustration prompted by the situation of my colleague Sara Ryan whose son Connor died in the bath in a so called specialist treatment facility in Oxford, a treatment facility which has since been found (along with many others) to be judged to be of poor quality by CQC.  A death that has been ruled as preventable. Not only should Connor not have died but he, like many other people in assessment and treatment units, should never have been in that unit unit in the first place. Why was he there? Because in a time of crisis there was no other local support for Connor and his family. Even though they had a personal budget, there were no services to purchase that were felt suitable for meeting Connor’s needs at that time.

Although I firmly believe that progress has been made in improving the situation of many people with intellectual disabilities, it also feels like we have been banging our heads against a brick wall for years. Jim used to talk about the English system as being like the Push-Me-Pull-You creature from Dr. Doolittle. However the optimist in me believes that we do generally take three steps forward, two steps back.  Unfortunately those who are most vulnerable with the most complex needs are those for whom services do not appear to be progressing at the same rate as for those with less severe disabilities. We know what is needed to improve disability services but getting the context correct to both incentivise and support organisations to do it seems to be an uphill struggle.

Secondly because I am constantly asking myself (and others ask me too) what would Jim say if he was here now, reading the comments, the media coverage etc.  Well I am pretty sure that he would be turning in his grave, if he hadn’t been cremated, that is!  And he certainly wouldn’t just be reading……

And thirdly, I am feeling guilty as I promised Jim before he died that I would finish and publish a series of papers we had been writing together and I just haven’t had the time nor energy to do it – why? because I have been spending so much of my time helping organisations in this country and abroad who have recognized that they need help to do things better, work out what to do – how to train staff in active support and how to embed good practice and a culture where staff enable and empower people rather that care for  and control.  I (with Jill Bradshaw) have also been training trainers, frontline staff, and helping organisations to shape their ability to monitor the quality of their support by training observers to stop the reliance on paper or computer based recording which is not accurate and takes staff away from actually supporting people.

The other thing that I have been involved in recently has been looking at the situation for people with disabilities in many other countries, in particular looking at the number of people still in institutional services. It is hard to define institutions and that is a whole other topic – but if you are interested have a look at the position statement by Mansell, Beadle-Brown and members of the Comparative policy and practice SIRG of IASSIDD . However, when recently writing about the UK for a report I was writing, I was again struck by the fact that we have a substantial number of people with disabilities in services that are over 10 places, with some much bigger. The average size of service in the UK for younger adults is more than 9 places (Commission for Social Care Inspection, (2009) The State of Social Care report). In 2007 Mansell et al  (DECLOC) estimated from the data available (and we know this is an underestimate) that 66,342 people with disabilities, were living in services that were bigger than 30 places (this was not including older adults where nearly 400,000 places available were in services of more than 30 places). This situation hasn’t really changed today although it is hard to be sure as data does not exist in a way that we can really analyse properly (by accident or by design…).   People in other countries often think we have it all sorted here and they ask to come and see services here. However I often take them to not just some of the good ones (and we do have some very good ones) but also some of the not so good ones to help them think about the difference and about the fact that deinstitutionalisation is about much more than just moving people into small homes in the community – that is a necessary but not sufficient condition (pretty sure Jim said that too……) A friend and colleague from Croatia recently expressed her disappointment about the current situation in countries which were supposed to be leading the world in terms providing community based settings. I was explaining how scandal was important in the UK in promoting change (Winterbourne View being a good example) and realised just how awful that was, when we also are the country with the most research on how to do things well for this group of people.

You know, we have some very, very good services in this country who are really good at enabling and empowering people to have the best lives they possible can. Only this week I had a CQC inspector contact me having been to visit three services with which she had been impressed – not only with the quality of support and the way staff were assisting people to be engaged but also with the fact that staff could coherently and enthusiastically explain the model they used (Active support).

However at times organisations are struggling to keep the good practices going, not because they aren’t skilled or motivated in doing so but because they are battling an unsupportive context. We need a policy context that supports active support – this is NOT the same as person-centred planning – it is the action that helps person-centred plans become a reality not just a piece of paper in the filing cabinet.  This requires a skilled motivated staff team (NB skills does not necessarily equate with academic qualifications).

We need a regulation context that does not allow new large settings to be established and which encourages existing large services to change, sensitively taking into account the needs and preferences of the people they support, of course.  Would you really choose to live in a unit for 13 people rather than on your own or with a small group of people you chose to live with? There are some very good small forensic units – so there is evidence that it is possible to support even those with more dangerous behaviour in smaller settings. Jim used to say that there are no economies of scale if you care about the people.

We also need an inspection system that looks at the lived experience of people supported by services in terms of their quality of life, not just at whether certain processes are used.  This is not as hard as it might seem – CSCI were moving in this direction with excellence ratings and the development of SOFI.  Having heard David Behan speak on a number of occasions about how person-centred approaches such as active support will be important to inspection processes in the future, not least at the Jim Mansell Memorial Lecture in March 2013, I have high hopes that the current revision of inspection processes will make a difference.  CQC have many of the tools necessary to support this but inspectors need to know how to observe and even more important need to understand what it is possible to achieve, even for people with the most severe and complex needs.

There is so much more that could and should be said – i have only touched on some of the most salient issues circling around in my head right now. Hopefully this will prompt some useful discussion to forward the debate and drive forward the agenda for change.

So what am I going to do now ……well I think it is high time that I make space to write all those papers that I promised Jim I would finish. I will start though with a little overview booklet for which he had drafted the outline just before he died, bringing together the evidence base for improving services for people with disabilities to offer recommendations for policy and practice.   However just to give you a bit of an insight, I will leave you with some of facts from research over the past few years, for you to think about:

• Did you know that in Norway it was made illegal to establish a service for people with intellectual disabilities for more than 10 people…..? In the UK it is still legal to set up a service for 30, 40 people.  This doesn’t mean necessarily that people are more engaged  in their lives but the necessary conditions for person-centred approaches are there.
• Did you know that economies of scale do not exist if you care about whether people experience at least relatively good outcomes – the bigger the service, the fewer the staff, and the less time staff spend with people and the lower the levels of engagement in meaningful activities and relationships. Adding staff into services not working with active support doesn’t make a difference as it is what staff do that is important, not just about how many staff there are, and in fact previous research by David Felce and colleagues showed that adding too many staff has a negative impact on outcomes for people. You need just enough staff with the right skills and approach to support those particular individuals.
• Did you know that people in supported living or receiving individualised services are more likely to be receiving good support but that this is not guaranteed – again it depends on the skills of staff who are supporting them.
• Did you know that only between 20 and 30% of people with learning disabilities receive good consistent support to be enabled and empowered? (Several papers under review or in preparation.)
• Did you know that on average, in a random sample of care homes, where the average size was 7 places, people with intellectual disabilities spend approximately 40% of their time engaged in some form of meaningful activity or interaction? This was only about 2 % of the time more than those in older adults services who were on average around 80 years of age and above (Netten, beadle-Brown et al, 2010 and another one of those papers I am currently writing). That means that for 60% of the time, people do nothing meaningful. Of course there was variation – some people, almost always those with less severe disabilities, were engaged more, but some people spent no or almost no time in meaningful activity.
• Did you know that on average people have any contact with staff or anyone else for at most 15 minutes in every hour? – that includes negative contact, being told not to do things, having things done to you, just having your wheelchair pushed etc And that was in a study where 25 out of 35 services had been nominated by their organisations as providing good support for people with severe ID and complex needs. In the Netten, Beadle-Brown et al study it was even lower – people received contact from someone else on average for 7 minutes in every hour.  That means that for 53 minutes in every hour, no one talks to them or touches them. What a life of isolation…..
• Did you know that of the contact people do receive, less than a minute in every hour (except where active support is being provided) is in the form of assistance to be engaged in meaningful activity or relationships?
• Did you know that people with disabilities living in groups receive contact from other people with disabilities around them for less than half a minute in every hour – and mostly none at all?  it is slightly better when people are more able but not much.  So what is the justification for people having to live with others with disabilities?
• Did you know that there is evidence that living with someone with challenging behaviour does not disadvantage people without challenging behaviour but people with challenging behaviour living with lots of other people with challenging behaviour does disadvantage those with CB.
• Did you know that it doesn’t require significantly more staff or cost more money to provide good support for people than it does to provide mediocre or even down right awful support for people? Local authorities are funding support that does not produce good outcomes far more frequently than support that does. (Beadle-Brown et al ., under review).   When teams are using active support, staff are used more efficiently – they give people more assistance and contact, people are more  engaged, are more likely to have contact with friends, will engage in a wider range of activities around the home, including more complex activities such as using gas and electrical equipment.  People are also more likely to have contact with people who are not staff or other service users when out in the community.
• Did you know that in Queensland and Victoria, State government clearly state that services supporting people with intellectual disabilities should be supported using an active support approach? – doesn’t mean they all do it but the appropriate context and expectation is there for it to happen.
• Did you know that researchers in the UK have generated more research and resources on how to provide good quality services and support for adults with intellectual disabilities and/or  autism than almost anywhere else in the world? Research from this country has influenced research and practice in other countries such as Australia, Ireland, Croatia, USA, Romania, to name just a few. So why aren’t we using the evidence base available to us to inform policy and practice on the wider scale in our own country?

What would Jim have said….? Well actually he (and many others) have already said it – now “all” that is needed is action and implementation…. Easier said than done, I know, but none-the-less possible.