All posts by Julie Beadle-Brown

New Resources on person-centred active support and the importance of structure “Stay Inside: Be Inspired”

Since March, our world has changed quite substantially – bringing uncertainty, anxiety and isolation for many.  Staying active and trying new things, and creating structure and routine, have been identified as helping all of us to keep healthy and happy at this time, although they are, of course, important for our well-being even in normal circumstances.

Children and adults with intellectual and developmental disabilities (such as those with learning disabilities, those on the autism spectrum and those with other similar conditions) often need help to keep active, try new things and find helpful routines.  Some will just need some encouragement and help to organise opportunities; others will need very substantial support. Active Support is about enabling and empowering people to make the most of opportunities available to them.  When one set of opportunities is not available, then we need to look for others and for new ways to provide support.

We have been approached with many stories about the difficulties people and their families have been facing as a result of coronavirus restrictions – reduction in support, closure of day services and schools, closure of public and leisure facilities, shops etc. Both staff and families have been asking for help to find things for people to do and to help people cope with the changes in their routine.

We have also been told many stories of how people have been coping and how they have been creatively using the principles of person-centred active support (sometimes without realising) in order to help people keep active and connected, and to reduce stress and anxiety.  We heard about one gentleman who got the opportunity to wash the car which he absolutely loved, because the car wash at the local garage was closed.  Another example came from the parent of a young autistic lad who had not been able to go to school – she started to get her son involved in some of the everyday tasks around the home – little things initially – setting the table, clearing away dishes, making a snack etc.  Not only did these give him new sources of activity to help keep him busy and develop useful self-care skills but they provided a new helpful structure as they were things that generally were associated with key times of the day.  This helped to reduce his anxiety caused by the loss of the routine normally associated with school.

United Response and the Tizard Centre were supposed to celebrate 20 years of working together to implement and research active support with an international conference earlier this month. Obviously, given the global pandemic, this had to be cancelled. We decided to work together to produce some resources that might help families, personal assistants and support workers who were trying to help people through changes in their normal routines and the sudden loss of sources of activity and predictability.  During April and May we developing the “Stay Inside: Be Inspired” resources and these were launched in early June.  Although these resources are a response to the Coronavirus pandemic, they will hopefully be useful far beyond the end of the pandemic.

stay inside be inspired logo

In addition to the written guide, there is a poster which summarises the key elements of person-centred active support.  These are free to download or you can request a free hard copy to be posted to you.   These focus on helping you understand the key elements of active support and what is needed to ensure that we provide predictability and consistency and learn as we go.

We have set up a Facebook group which anyone who is providing support to children and adults with disabilities in any environment can join.  We will keep you updated with new resources and opportunities and also discuss questions and opportunities.

We have also been running some introductory webinars. We have now run four webinars and a video from the introductory webinars will be available soon.  There are also links to other video resources related to active support.

The next opportunity for people to get involved and take their learning further, will be a series of support sessions which will give participants the opportunity to think about and plan how to involve someone they support (a child or an adult) in new (or more parts of) activities.  These sessions will be interactive in nature and are likely to last around 1 ½ hours. Participants will work in pairs or small groups with the support of one of us (Julie, Bev, John and Alan).

There will be two sessions which will be specifically for families:

  • Tuesday 8th September – 1030 – 1200
  • Tuesday 6th October – 1030 – 1200.

There will also be two sessions for those working in a service setting as part of a team:

  • Thursday 3rd September 1100 – 1230
  • Monday 14th September 1300 – 1430

For more information about these sessions please see the Stay inside: Be Inspired website.


What would Jim have said?

Every now and again, people still ask me “What would Jim Mansell say about this?”. Given recent media reports and twitter debates, we thought that it was the right time to share one of the last things he wrote. It was written in the context of supporting deinstitutionalisation in Europe.  It needs no discussion. His words say it all.

“Compromise and service development
I wanted to comment on one issue which I think is probably an issue for many of you at present …. This is the question of how far to compromise in the service model when negotiating service development.

My experience is that compromise is often going to be necessary. I know from personal experience that almost no-one in British services believed, at the beginning of the deinstitutionalization process, that every individual could have their own home. The pioneers of the 1950s and 1960s developed homes of 20-25 places not because they thought these were an optimal size, but because in a world where people lived in institution wards of 60 or 70 people, no-one could imagine anything smaller. Group homes were partly a response to the perceived difficulty of funding the support needed for people to live on their own. The situation is different now in that we do have models that support individuals well in their own homes in the community, even though they have the most severe disabilities. Even so, I expect many of you will face demands to compromise in your plans. The question is, can you compromise in a way that is part of the solution, rather than part of the problem?
Thinking about my own experience, I have tried to set out the criteria I have used in making judgements about new service developments in which I have been involved:

1. Don’t commit resources permanently
So I have never agreed with plans to refurbish old or build new institutions because these commit scarce resources for tens or hundreds of years. Once the place is built is becomes much harder to abandon it. I would, though, consider buying or renting houses because these could be sold on the open market if people’s needs (or our imagination and creativity) change. I would want to get in writing that models could be adapted and changed as circumstances permit.

2. Don’t reinforce prejudices
I would not agree that group homes were needed for people with more severe disabilities, since we know that everyone can have a good life in their own home. I am more comfortable with the justification that we are providing some group homes because that is all we can pay for at the moment (ie the justification is nothing to do with the individuals we serve and all to do with the context in which we are working at the moment).

3. Insist on some good models as the price of compromise
The Board of an organisation providing a large institution in Adelaide recently sacked their Chief Executive for proposing its closure and set out plans for refurbishment. I was not able to reverse that decision, but I was able to get them to agree that they should set up a pilot scheme for people to get their own homes in the community. They may think this will buy off criticism and it may do. But I think it will also give the individuals concerned, their families and the staff who support them knowledge and experience of an alternative they have never imagined and it will sow the seeds of wider change in a few years’ time. I have done my best to make sure that this scheme will not just be for people with low support needs, so that it doesn’t inadvertently reinforce the prejudice that people with high support needs can’t live in the community.

4. Pitch the compromise at a workable level
My experience is that there isn’t much point trying to improve institutions – it is very difficult to do and it is much easier to just rescue people from them. So I would not agree that grouping more than a handful of people together was sensible. So for me, it would be no to institutions, villages, campuses, hostels, units or clusters. But what about a group home for three or four people? Well the research on group homes shows that run well they can achieve many good things for the people living in them, and that the difference between a well-supported group home and supporting people in their own homes is not necessarily very great. I would still prefer to support people in their own homes (because I would value the greater housing rights this would give people as well as the symbolism) but if a small group home was all that could be achieved I would be inclined to agree, while all the time pushing for the features that would make it more like supported living (so eg choice of co-residents, choice of staff, legal tenancy).

5. Hold to the same goals for everyone
Proponents of less-than optimal services usually want their cake and eat it. They want to say that group homes can be as good as one’s own home, or even that institutions can be as good as one’s own home, but then they also want to say that these options can’t be expected to achieve the same standards because of the practical difficulties they face. I think it is very important to continue to make explicit that a price has to be paid for not doing the best we can. That price is paid by the disabled people who live with others they don’t choose, in settings that restrict their quality of life in all sorts of ways; and by the staff who support them. So, if people are living in group homes, it is important that everyone is thinking “this is good, but it could be so much better”.

My picture of the service development landscape is that way ahead in the distance are the present boundaries of the possible. These are the things that we know are possible and desirable but they are the leading edge. This boundary is a horizon, so that as we approach it the definition of what is now possible moves ahead (because of changes in technology but also changes in attitudes and expectations). Behind this boundary there is an area in which we are working with models that, though we know they are not ideal, seem to us to be steps on the road to the horizon, not least because they are capable of transformation. At the back of this zone is another boundary, beyond which models of service seem now to be unacceptable. We look at them and think “how could we ever have thought that was acceptable?” Our task in supporting principled service development is to move this frame of consensus forward, connecting people to the vision on the horizon and helping them see that they are on a journey. Not everyone is going to be able to be a pioneer out there near the horizon but those who come behind need to know they are heading in the same direction”.

Jim Mansell, August 2011

The role of skills and motivation in implementing person-centred approaches

Responding to one of the comments on my first blog post, I agree that a key issue is that staff need to feel valued and motivated – staff performance relies on two things – skills and motivation.

Organisations are relatively good at dealing with the skills issue – e.g through training – although sometimes they forget that applying skills is not an inevitable consequence of training.  To develop skills, they need to do hands on training and ongoing coaching (and other elements of practice leadership) to help shape up performance on the job.

Do you need to have more qualifications to become more skilled?

It is important to note that being skilled does not necessarily equate to having more qualifications. For good support, the most important thing appears to be the knowledge and skills that are gained from specific training in person-centred approaches that must include a hands on, experiential element.  Of course where professional qualifications include that type of training and experience as part of their programmes then we see more skilled staff .  I was really encouraged recently to hear that learning disability nurses in Scotland now complete a module in active support as part of their training.

The role of  motivation

Coming back to what is needed for successful implementation  – motivation is often forgotten by senior managers when trying to improve services. Motivation comes primarily through two routes – values and consequences.

  1. Values:  The values of those supporting people, whether volunteers, front-line staff or managers and the perception staff have of the values of their managers are both equally important. If staff only see the people they support as ill or disabled and therefore primarily needing care or nursing then this can affect their willingness to use approaches that enable and empower.   Please note this is not the same as leaving people to their own devices but rather sensitively and positively supporting people towards greater skills and more involvement and generally better quality of life.

If staff see people as

  • having at least some skills and abilities and positive attributes,
  • as being like themselves,
  • deserving of a good quality of life,
  • as good company etc.

then they are more likely to work naturally with enabling and empowering approaches.

Managers views matter

However, even if staff have such positive approaches themselves, and have been equipped with the skills, they also need to know that this is the most important thing to their managers.

If staff think that what their managers want is simply to comply with certain standards, ticking boxes rather than focusing on outcomes for the people supported, then that is what staff will focus their efforts on.

If they think that what managers value is making a profit,  keeping the house clean and well maintained, or filling in paperwork etc. then that is what they will focus on.

However  if they think that managers really care about the quality of life and quality of support they provide to people then they are much more likely to focus on engagement, active support and other person-centred approaches.

If managers visit and ask the right questions (similarly with trustees)and can also pick up good support and even make suggestions for things to try then it can make an enormous difference to staff motivation.  Managers must think about messages given to staff by the mission statement, job descriptions, other polices and procedures such as health and safety, the website, recruitment processes, quality assurance or auditing processes, etc.

Another important element here is external context – such as the demands staff and managers perceive as coming from the Care Quality Commission.  If services get a good or excellent rating for having all the paperwork completed and inspectors don’t pick up on the fact that service users are sitting around doing nothing while staff are busy filling in the paperwork or cleaning (or in the case of Winterbourne View, also doing nothing)  then that is the wrong message.

If those services where staff are so busy enabling people that some of the paperwork isn’t completed get their knuckles rapped then then that creates a disincentive for active support.

Does how we inspect services matter?

However if inspectors come in and the first thing they do is sit and watch for a bit, talk to people, but essentially observe what is happening, how staff are supporting people and then if necessary go to check out the supportive documentation in the office, this creates a completely different motivational context for staff.  This is especially the case if they mention in their reports and commend services for high levels of engagement and good quality of support in terms of active support, communication, autism-friendly practices and positive behaviour support.  If inspectors know what good support and good outcomes look like and are trained to observe and comment on these,  then organisations will be encouraged to focus on the quality of the support staff provide and be able to demonstrate the  outcomes in terms of the quality of life of the people they support.

I firmly believe that things are about to change for the better in terms of inspection and registration processes.  If inspectors are going to be looking for implementation of positive behaviour support and in particular whether people are being enabled and supported to spend their time engaged in meaningful activities and relationships then this will have a powerful effect on the motivational context in which services operate.  A number of things are needed to make this happen including training for inspectors. Of course the focus on engagement and active support and other person-centred approaches to support has to be on all services – registered care homes and domiciliary care. If we shape up the quality of our services in general then the chances are that fewer and fewer people will need to access assessment and treatment units and even if they do, their stay will really be for assessment and treatment because there will be high quality community based options for them to move on to.

What about views of commissioners?

Commissioners also are key in the motivational context for organisations to provide good support.  Commissioners have to know what good looks like and must commission services that are good. The results from our recent study funded by the School of Social Care Research, found that providing high quality support that improved outcomes of people – primarily active support but where active support was high then support for communication, autism friendly practices and positive behaviour support were also better implemented –  did not require significantly more staff and thus was not more expensive than providing much weaker inconsistent support where outcomes were poorer.   This is because good support is about how staff work, what they do when they are with people, not about how many staff (obviously once a basic threshold is reached) are employed or how qualified they are in a traditional sense.  Staff with the right values, the right training and the right support to enable people is what is most important.  Commissioners also have to take a long term view (difficult i know given the financial constraints and the constant restructuring of health and social care systems and processes) but sometimes a little investment now can save a lot of money in the future.  At the very least they need to ensuring that the services they do commission are providing the outcomes for people that they should be, in line with the Care Act.

2. Consequences: As well as values and expectations, the other aspect that is involved in creating a positive motivational context for staff to work in,  is that the consequences have to be clear, consistent and transparent. Obviously consequences can come from management and here there has to be as strong a process to recognise and reward good practice as there is to deal with poor practice, which does have to be dealt with.  It is not sufficient to just focus on the good stuff. To shape up quality over time, staff need to be supported to improve their practices.  I worked with an organisation once where the rule was that managers had to give 4 pieces of positive feedback before they were allowed to give “negative” feedback — nothing ever got better.  Of course how you deal with poorer practice doesn’t have to feel negative. In fact the process of improving practice should be so much part of the service culture that staff see it as a positive thing.  If it is done in a positive, collaborative, reflective way then this is by far the most effective method.

How can we support managers?

However this leads us to another issue in that many front line managers have not had the training or experience of working to lead practices in this way in the past.  This is something that should be a critical part of any training for managers working in social care settings. I am pleased to see that Skills for Care are starting to think about the issue of active support in terms of front-line staff competencies. Leading active support and other person-centred approaches needs to feature to be key management competencies too.

Other members of the staff team provide important consequences too. If there is a supportive staff culture with a shared vision and where staff all value person-centred approaches then implementation will be much easier. However if there are members of the team who do not work in this way and they show disapproval when other staff do, then this can have a negative effect on the motivation of staff.

What are the consequences of good support?

Consequences also come from the people being supported.  If staff support people well there will be positive consequences from the people they support – a smile, a laugh or simply just seeing someone do something they have never done before or hearing someone say “i never knew he could do that”.   Remember that if people choose to get engaged they are telling us that we have done something right in terms of support – we have presented the task well so that they have understood and we have a history of providing them with enough of the right type of help to ensure success.  Of course if we provide poor or inconsistent support for people, then they also provide consequences – either in the form of withdrawal or in challenging behaviour.



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.