It’s not just quality of life

You will no doubt have heard someone say Positive Behaviour Support is all about improving quality of life. “We just listened to what he wanted…” or “We did things his way and now we don’t need to restrain him” are some of the common themes you will hear in this perspective.

I agree without a doubt that doing things the way that person wants and improving quality of life are core components of PBS. But I disagree this on its own is not enough to be Positive Behaviour Support. Here’s why.

If you aren’t doing this then what are you doing!

Are there really approaches out there that don’t listen to people, try to do things their way, and try to improve quality of life? How is this any different to any other approach that is out there? If you are in the health or social care profession and these are not your goals you are in the wrong career. It is also something that is very easy to say you are doing but difficult to prove.

When we are saying we are improving people’s lives are we doing it to our beliefs of what is good or theirs? How do we know it is what they consider good if they cannot tell us?

lack of respect for people who are experiencing challenges. 

If the notion is that when people are listened to and their quality of life is good they are not challenging, then the assumption is that if someone is challenging us we obviously aren’t listening and are not trying to improve quality of life.

I have worked with many families and teams who have been challenged. Usually, they are doing their very best in a very difficult situation. If you are a parent who is challenged by your child’s behaviour and you know if you ask for help they will come in and tell you that you are obviously not listening to him enough or you should just try to make his life a bit better would you ask for help?

PBS is more than that

I see PBS as being on a spectrum of interventions. Person Centred Support is a values based approach to supporting people with learning disabilities that focuses on listening to people and improving their quality of life. I would estimate that for around 80% of people whose behaviour challenges others Person Centred Support will address this.

There are some people for whom person centred approaches alone would lead to people rocking in the corner in the name of “choice”. Some people need additional support and encouragement to sensitively try new things, to experience success, and increase occupation. For many of these people Active Support alongside Person Centred Support is needed.

And finally there are a small number of people whose behaviour is challenging their supports to a level that engaging in activities is not easy. In this instance PBS and Active Support and Person Centred Approaches are needed. You cannot do PBS without Person Centred Approaches.

Multi Elimental

PBS needs to be based on the science of behaviour and must be multi elemental.

Firstly we need to understand the function. Sometimes this is simple but other times a detailed functional behaviour assessment is required to properly understand the function of a behaviour. When we understand that function we can then plan how we can support the person to meet that function in a better way.

There is nothing prescriptive about what should or shouldn’t be in a multi elemental approach. However, they are commonly arranged with the following headings:

  • Teaching new skills – giving people better ways of getting what they want
  • Environmental interventions – changes to the physical environment and people in it (approaches by support) to make the new behaviours more likely and the environment more supportive
  • Focussed strategies – reinforcement is key to learning for all of us. People with learning disabilities sometimes need support in understanding reinforcements are connected to actions so we make plans to ensure reinforcement is effective
  • Proactive Strategies – how we avoid the behaviours that challenge us from occurring
  • Active Strategies – how do we respond to early warning signs that behaviours that challenge us may occur, or how do we manage risks in high risk situations that we know are likely to lead to these behaviours
  • Reactive strategies – how do we respond when the behaviours that challenge us are occurring to end the situation as quickly and safely as possible.

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A moral decision

Positive Behaviour Support is using the word “Positive” to mean “adding”. People with learning disabilities have learnt fewer behaviours than us to meet their needs. What right do we have to reduce or stop behaviours when behaviours that are effective for them are challenging us? In PBS we are choosing to “add” behaviours instead of reducing them.

Understanding the function of behaviour, changing our focus away from reducing the behaviour to meeting the function instead, and choosing to add behaviours instead of take behaviours away is central to what PBS is about. You can improve quality of life without doing this, but you are not delivering PBS if Quality of life is your only focus.

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A different way of “working” #LDWeek17 #TransformingCare #TransformingLives

Keith Jarvis, our Service Development Worker describes how PBS4 is changing the lives of people we employ:

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I would like to tell you about another side of PBS, a side that is sometimes forgotten, But is an important part of the support we offer.

That is the journey of our Enablement Assistants, as they see the effect of PBS working. How PBS4 not only changes the lives of the people we support but of the people giving the support.

I came to PBS4 from a care home, I had been in care for around 8 years when I started with PBS4. I came because it was a new company, with opportunities, but I also found that the company is not an in the box organisation.

As I started with the company, it was a little difficult to adjust to doing things the PBS4 way, thinking about the individual and shaping the day, around them and their needs, rather than the company.

As I have developed and progressed within the company, it has been amazing to see how the people we support have developed. I have seen and been part of services joining PBS4 and services progressing, to where the individuals needs have been enhanced so much that they have a staff reduction.

As part of the PBS4 management team, I have seen our Enablement Assistants develop with them, our culture of nurture, shaping, support and Training, means that our staff come to us with the solutions, come to us with a plan for something. They have the confidence to step outside the box, and challenge the system.

We are very privileged to have an amazing team of enablement assistants that work to improve the life of the individuals, in an individual way.

I for one am very grateful for the two way progress PBS4 has had on my life and my way of thinking.

This is LD week, and we celebrate the amazing achievements they have made, but I feel we also need to celebrate the individuals that have supported them to get there as well.

My training #LDWeek17 #TransformingCare #TransformingLives

Ian is a man we support. He was involved in his teams induction training. Here is his feedback

IMG_1553What went well?

It was beneficial for me and the staff. I found it indicated to me that the staff needed a lot of training, which they got. Now I have the right staff and that’s why I’m getting on with them more.

Proact Scip was good for me and I can see it will help the staff to deal with situations. I love the way that the staff can direct you to places and it’s not like hospital where they just put you on the floor and hurt you. Jonathan taught everyone properly and there was one staff that didn’t take it seriously. The other staff took it seriously.

I loved being involved in the Proact Scip because in the hospital I wasn’t allowed to take part. I got a feeling that I was actually in control and the staff were in control. I feel like the moves that were taught would calm me down.

What did you not like?

I couldn’t concentrate for a long time. There was too much information for me.

I didn’t like to sit through the whole day. I know it was beneficial for me as well, but I can’t take in loads of information and I felt overwhelmed which is why I kept interrupting.

Ideas for next time?

Longer breaks. I would like it if my parents took me out for the day. Maybe they could stay for a little bit so they can hear, and I can go out in the afternoon with them because this is when I struggle.

I would like if staff took the information and put it into pictures because of my autism and my learning disabilities, I understand it more if it’s in pictures, even if it’s little figurines (cartoons) in the picture.

A fresh start #LDWeek17 #TransformingCare #TransformingLives

For #LDWeek17 here is how our Enablement Assistant Hilary Taylor-McCaffey is finding her role:

I wanted to share a little bit about my experiences with Ian so far.
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I have worked in care for the past three and a half years. Before that I went through job after job, constantly looking for something rewarding and engaging. I constantly felt like I wasn’t making a difference, and so I would move onto the next job looking for that missing spark.
I recently bought a house with my husband and we made the plans to move house. Part of those plans was for me to change jobs, and I was keen to look for something similar to what I was already doing. I answered an ad to work for PBS4 and was lucky enough to meet Ian on the day that I interviewed. We had a great chat and he had great banter, and I was immediately intrigued to learn more about him.
When I started working with Ian I had big plans for him. I suppose I had a sense that I would be walking into his life to help him in some way, and those illusions were soon dashed! Quite the opposite became true: I found I was learning more from Ian than he was learning from me. Instead of me showing Ian how to fit into the world, Ian was showing me how the world should fit around him.
In the few short months I have been working with Ian, he has taught me to meet the world head-on. In this age of self-absorption, Ian reminded me how important it was to talk to people, to make friends on the bus, or just start a conversation with someone in a waiting room.
He taught me to not fear new situations, and to express your feelings in a way where people would listen.
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I could go on and on! But I think I’ve summed it up enough. I thought I was getting into care to help other people, but I had no idea how much the people I support would be helping me.

#TransformingCare #TransformingLives #LDWeek17 Improving Communication

Our Enablement Leader, Lisa Malia, shares her experience:

I do a lot of work with PECS (Picture Exchange Communication Systems) with a person we support.
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We subscribe to a system called Communicate In Print from Widget. I have made lots of symbols available for the person we support by identifying what is important to her and what she would like to choose. I printed the pictures, laminated them, and organised them in folders so as the person we support and her team know where they are and they can find them quickly. We also have put up a white board in her living room and put the most used ones all around the edges so as anyone can find them quickly.
I introduced them to morning routines using now and next to build consistency, and use them on a choice board for activities and meals.
In October I went around the person’s home and placed PECS on cupboards, rooms and draws. Her routine is for her team members to hold out 2 items of clothing for her to choose from in the morning. Since sorting her draws onto individual items and placing PECS on the draws, some days she will get her clothing for the day including underwear and place them in a pile outside her bathroom with no support before day staff arrive on shift. She does this completely independently now because the pictures have given her structure and predictability. She has never done this before and she is now more in control of her life.
I love the fact PECS have given her independence, consistent morning routines, and clear choices she makes herself. She is in control!

An invisible difficulty

By Jonathan Beebee

Somewhen in the near future will be a landmark time for me. I am approaching the 19th anniversary of my head injury. It happened when I was 19 so I will have lived as long after my head injury as I lived before it (no hiding my age now)

The fact I am living at all is incredible. My family were told I would die when it happened. When the doctors realised I wouldn’t die they told my parents I would be a “cabbage” (great choice of words) and that I would be dependent on them for everything. That was my future. Thankfully they were wrong. I have taken strength from what happened and dedicated myself to ensure people who do need support get high quality support. Turning the bad to good.

Most people I meet now have no idea that I had a head injury. Only the people who know me well know how this continues to affect me on a daily basis. Whether it actually does affect me or not is something I will probably never know. When I forget something is this because of my head injury or is it just a normal thing to happen? Do I forget things more than others? There is no way of truly knowing. Here are some of the things I notice that I think are a result of my head injury that most people probably don’t notice.

I do have a terrible short term memory. When I meet new people I can’t remember names. When I am told to do something if it isn’t written down it’s forgotten. It’s not that I have no memory but I have to try really hard to get things from short term to long term memory and if I haven’t emailed myself about it I won’t remember.

I have some type of dysfluency. The words I think of saying are not always the words that come out my mouth. Sometimes the words that come out will be completely random. Sometimes they will be starting with the right letter but completely the wrong word. Sometimes it will be another word associated but completely wrong. Most of the time I can brush this off with ease. However I have noticed it is getting worse.

I also have word finding difficulties. This can be similar to other people but I can stutter, stumble, and just freeze in conversations. This was worse at the time of my head injury. It’s still present but I can cope with it. A good coping strategy for this is to look thoughtful.

I cannot do multi-tasking at all. If you haven’t got my full attention I probably have no idea what you are talking about. I need to put a lot of energy into focussing on something. When all my energy is going on one thing I can’t share that attention with anything else.

I am impulsive. I will jump at a decision and take risks without thinking things through. Most of the time this is more of a benefit than a problem.

There is something about rules that means I have to try and break them, or at least push them as far as I can. If I am told I can’t do something I will go out of my way to do it, even if I don’t really want to. Though this was probably something I did before my head injury if I am honest.

I have a quick temper. If something isn’t right I can go from being cool, calm and collected to totally full of anger in seconds and I don’t let things go. Before my head injury I remember myself as being very passive and not getting angry about anything. I think my passivity was part of the reason I got the head injury in the first place, which may be why I avoid being passive now when I could let things go.

Some things that should affect me emotionally I can be completely numb to. I know I should feel something but I don’t. It’s not that I don’t care, just it isn’t affecting me.

There has been some form of central nervous system problem since my head injury. My legs can go into random tremors is the main issue. This is happening less now than it did but it’s still there.

I probably am too open about things that I should keep personal. Probably like most the things I’ve said here. I often say things that I probably should regret and should have kept to myself. Thank goodness I am numb to feeling shame at what I have said, well most of the time. I do recognise mistakes.

Most of these things I have used to my advantage. My impulsivity has made me take risks, my anger for things that are wrong has led to me speaking loud about what I am passionate about. The attention I need to put in to focussing on things means when I am determined to do something it has 100% commitment. I have benefitted from these difficulties as much as I have struggled. Well most of the time. When things are going wrong it’s not easy.

I will never know for sure if what I am experiencing now is from the head injury or just part of being a normal human being. I know I think about it every day. I know I struggle with it. An invisible difficulty that is so invisible even I’m not sure if it’s there.

I feel huge pride at the difference I have made for people with learning disabilities, and none of this would have happened if my head injury hadn’t happened. It wouldn’t be happening if I didn’t continue to think that person being supported could be me. I am proud of my head injury. But that doesn’t mean it doesn’t cause me problems.

Next week is Learning Disability Awareness Week. This is always a great opportunity to raise the profile of the lives of the people we support. Personally I will be thinking of everyone out there with a hidden disability. The person whose needs aren’t instantly seen by everyone. The person who people make assumptions about but they don’t have a clue what is happening for them “behind the scenes”.

For PBS4 we will be focussing on the Transforming Care agenda. The title Transforming Care meets our ambitions. We want to shake up how social care is delivered and see if it can be done differently. We want people with learning disabilities to receive dedicated, personalised, evidence based support. We want to also focus on Transforming Lives. On how the support we are developing is making a difference to the lives of people we support. Some of the things we are doing are huge. Some may be seen as tiny on the scale of things but are enormous for that person.

We will aim to share a blog a day next week on #TransformingCareTransformingLives (not the easiest hashtag for twitter – feel free to suggest alternatives) sharing the successes we have achieved. We welcome others to join us and share their successes too.

A New Narrative for PBS

Can we create a new narrative for Positive Behaviour Support? The current one gives the wrong message.

Everyone hears the word “positive” and think that means it’s about either doing “good” or supporting “good behaviour”. We have absolutely no right to judge what is “good” for another person. Our well intentions may not be their cup of tea, and they might not want the “good” things we want.

We then get bogus PBS rubbish about how PBS is all about improving quality of life. Well frankly that makes it no different from any other intervention. Even old school Behaviour Modification aimed solely at reducing behaviours would say that the intervention was being done to “improve quality of life”. It’s values based twaddle at the end of the day that means absolutely nothing.

change-0The starting point has to be that we are supporting people with a disability in learning. This disability means that the person has learnt fewer effective behaviours than we have. It doesn’t mean they can’t learn more behaviours, but due to their disability in learning, learning new behaviours takes time.

Although a person has learnt fewer behaviours, the behaviours they have are very effective. We need to respect the behaviours people have and their functionality, even if we find these behaviours challenging.

If we find behaviours challenging, with PBS we take the ethical viewpoint that our priority is going to be to look at how we can support the person to continue to meet this function, and this takes priority over reducing the behaviour.

If a behaviour is to avoid something we may help them to avoid this more often. If avoiding this limits their life then we may support someone to learn coping skills. Or we may teach them a better way of avoiding it that is more efficient and effective than the behaviour we find challenging.

The same for if the behaviour is to gain something. We may look to how we make this thing freely available, coping skills for when it is not available, or supporting a better more efficient way of getting it than the way that challenges us.

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There are a wealth of pseudo PBS practices at the moment and you can’t really tell what it is people are actually doing. Some approaches fake an evidence base (evidence based practice and practice based evidence) and are beginning to create a new “service land” that people will get stuck into. It is missing the art in the application of the science and creating a culture of speaking the right lingo gets you in the club even if what you are actually doing does not represent the sound theoretical underpinnings.

We know too well in supporting people with learning disabilities how people can jump on bandwagons and completely misunderstand which bandwagon they are on (e.g. He is choosing to do nothing and I must respect his choice).

Maybe having a clearer narrative about what Positive Behaviour Support is will help better define what it is and avoid it being misrepresented. Saying it improves quality of life with a couple of buzz words thrown in should not be accepted as good enough.