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.

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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.

Challenging Everything :)

By Jonathan Beebee

I have a reputation for challenging everything. I am split as to whether this is a good thing or a bad thing.

How I see this is people are finding me “challenging”. My professional stance on challenging behaviour is that it is behaviour that challenges others. Sometimes my behaviour challenges others. I accept this. In general the people my behaviour challenges are people who specialise in working with challenging behaviour, so surely my challenging behaviour will be something that they will celebrate, right?

Suggesting I challenge everything is a little inaccurate. I have some core beliefs and values about Positive Behaviour Support and I aim to maintain integrity to my viewpoint. I won’t change my viewpoint to be accepted by the gang. I won’t accept things that don’t agree with my beliefs just because they are said by someone who is in a position of high esteem.

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Those who know me will know I find one of the biggest challenges out there at the moment the wealth of the P.B.S that is Positively Bull Sh*t. Here are my key values and beliefs that I view things against using my Positively BS (versus genuine PBS) detector:

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– Positive Behaviour Support is underpinned by the science of Applied Behaviour Analysis

Understanding behaviour is complex. Understanding the behaviour of people with learning disabilities can be even more complex. There is a genuine science that can help us understand behaviour. This science can help people learn new skills (fantastic news for people with a disability in learning) and it can help people to change behaviours that are problematic for them. If PBS isn’t underpinned by Applied Behaviour Analysis then what is it underpinned by? what is the scientific evidence base it follows?

– Positive doesn’t mean “good”, it means “adding”

Some people take the stance Positive Behaviour Support means supporting behaviours that are “positive”. Who are we to say which behaviours are “positive” for others and which are not? If the only behaviour a person knows to get the attention they need is to throw poo at others, then for them this behaviour is extremely “positive” (i.e. good). We have absolutely no right to say this is not a “positive” behaviour.

Saying Positive Behaviour Support means “we are doing good” or “this is when we are using behavioural approaches in a good way” is again a judgement we are making that isn’t ours to make. (This is often when people try to add “al” and call it Positive Behavioural Support).

The key difference I see in Positive Behaviour Support is its about recognising people with learning disabilities have fewer behaviours than those without learning disabilities to get their needs met. So when there is a behaviour that challenges us, preventing or reducing these behaviours is completely unethical. Positive Behaviour Support should seek to “add” (aka “positive”) behaviours, so as we give people more, better, more efficient ways of getting their needs met. If we give people better behaviours the “challenging” ones become redundant (a bit like how CDs made cassettes redundant) and we don’t have to take anything away from people with learning disabilities. So genuine PBS is about taking the ethical standpoint of we want to increase behaviours, not reduce them.

Any approach that calls itself PBS whilst focussing solely on preventing and reducing challenging behaviour sets the Positively BS detector into overdrive. This is no different from behaviour modification that has been done for decades. It need some the additional element of giving people something better.

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– PBS is not just about improving quality of life.

Every single approach out there seeks to improve quality of life. So what makes PBS different? Person centred approaches are out there already that by themselves aren’t PBS. So when people describe PBS as being about being person centred and improving quality of life I have to ask myself so what is different to PBS compared to approaches that are not PBS?

For me the answer is that we are focussing on meeting the function of behaviours. The behaviours we are looking at the person are leading to restrictions on the persons life.

The focus of any PBS plan should be about understanding the function of behaviour and supporting people to meet this in a better way. This should lead to skills that stick with the person for a lifetime. It should lead to a reduction of behaviours that challenge as a naturally occurring, good side effect. This should mean more “doors are open” for people and they have more opportunities open in their lives.

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– PBS cannot be done by anyone

Please don’t misunderstand this as me saying that not everyone can be part of PBS and wider understanding of PBS will benefit everyone. A wide understanding of PBS is clearly a great step.

As mentioned earlier, PBS is underpinned by Applied Behaviour Analysis. Why should people with learning disabilities not expect to receive this intervention from people who have been trained to a recognised professional standard, who are accountable to their registration/certification, and who are bound to work to a duty of conduct? Saying that support staff can do this unaided and unsupervised after attending a days course is ridiculous. It needs professional/clinical leadership.

We wouldn’t accept heart surgery from a support worker with a NVQ level 2 in heart surgery. We wouldn’t accept CBT for depression from a support worker with a BTEC in CBT. Why is it acceptable for people with learning disabilities to receive a half baked intervention from half trained staff? And we wonder why problem behaviour exists.

I recently saw a man who was putting his finger to his cheek and twisting it. The support said “ah he is asking for bonjella” and promptly went to get the bonjella and applied it. He was using the Makaton sign for sweets. What he was asking for was not understood. He was learning that a behaviour he had learnt now had a new reinforcement. He was now also unable to ask for sweets as they didn’t get it. And we wonder why people with learning disabilities have challenging behaviour.

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In summary, I am arguing for high quality PBS for people with learning disabilities. Why should we not accept the best. If something passes my Positively BS detector I wouldn’t challenge it, but sadly I haven’t found anything yet. And this may mean I appear to challenge everything. I am willing to accept that my behaviour may challenge others and the label that I have “challenging behaviour”, and I embrace it. Maybe one day something will start meeting the function of my behaviour.

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I became fed up of sitting on the side lines with a critical eye saying what everyone is doing wrong from afar a long time ago. I established PBS4 with the aim of rolling my sleeves up and showing how it should be done. Gosh, do I now know how difficult it is to get things delivered how you plan! But we are on a journey and we will get there. I am trying to stick true to the reality that 20 years ago I was nearly in a position where I would have been dependent on support for the rest of my life and could have been that person who was classed as “challenging”, so is the PBS out there now good enough for me? Sadly no. So I will continue to maintain my integrity. We still have so far to go.

Nothing should be beyond challenge. Myself included. Challenge everything? Well why not!

How RNLDs and BCBAs can support taking forward Positive Behaviour Support

This is a brief sum up of thoughts relating to how Learning Disability Nurses (RNLDs) and Board Certified Behaviour Analysts (BCBAs) can help take forward high quality PBS, following on from a #pbs4 tweet meet on this topic. By focussing on these two professions I am not excluding that other professions also have a key role, but BCBA’s are trained to the highest level of Applied Behaviour Analysis and many RNLDs are going on to do MSc’s or further studies in this. Both professions are in a very good position to set the expectations and raise standards.

Why is this important? There is a huge drive to increase the availability of PBS at the moment, and still there remains confusion about what PBS is. Most of the confusion is around the word “positive”. You may have seen in the last blog that we don’t use “positive” to judge if we think a behaviour is good/bad – who are we to judge this anyway! It is about “adding” behaviours, increasing independence. It is cognitive shifts like this that require skilled oversight to put in practice in my view. A lot of the attention at the moment is on how do we skill up support workers in PBS. This is great, but there are risks with PBS and if not overseen as a clinical intervention could make behaviour worse or create problems. It needs skilled oversight.

Here are my main thoughts on how RNLDs and BCBAs can help take PBS forward:

Promoting and growing the evidence base

PBS is underpinned by Applied Behaviour Analysis. There is a growing evidence base to its effectiveness. Nurses and Board Certified Behaviour Analysts have a code they work to that says we need to know the evidence and promote it. It is a core duty.

We have to challenge practice that isn’t in line with the evidence base. There is a lot of opinions about what PBS is. If it doesn’t fit with the evidence our codes say we should challenge it.

We also have a responsibility to grow the evidence base. PBS is a data driven approach. We need to write up our data, even if it is for one person, and publish it. We need to keep sharing what good should look like.

An educator

We should be educating teams and others about what PBS is. Sharing our knowledge. Helping other people to understand what PBS is about. There are always concerns about the terminology we use. But compare it to a cancer nurse who talks about hepatic malignant carcinomas. This may be gobbledegook to us, but they need that science to understand the evidence behind what they do. They may not use that language with patients and families. It is the same for us. We need to promote the use and understanding of the science, make it accessible, but avoid watering it down and deviating from what the science means.

Assessment

We have the skills and competence to complete full and accurate functional analyses of complex behaviours. Most behaviours won’t need a full functional analysis, you can understand a lot of behaviours just by listening to what people are trying to say. But sometimes people with learning disabilities, particularly without verbal communication, can be complex. For example, if a man starts hitting himself in the face his support might assume this is to gain attention. But if it is really because he has tooth ache this goes unresolved, but he has also learnt a new way to gain attention. The behaviour now has two purposes for the person. By not having a good assessment at the start the behaviour now has two purposes, and has become harder to stop.

Skilled assessment by competent professionals can avoid well intentioned support unintentionally making a bad situation worse.

Monitoring implimentation

Many people with learning disabilities and challenging behaviour will have more than one person that provides support for them. Each person may adopt what works for them. Imagine having a shower and one person puts the soap on the sponge and leaves you to it, the next day a different person gives you a full wash. You wouldn’t know what to expect. It is much easier for 5 people to learn to do something one way than a person with learning disabilities to learn 5 ways something is done.

Consistency is key in achieving real change and as clinicians, RNLDs and BCBAs are in an ideal place to design and monitor interventions are being completed accurately.

Measuring effectiveness

PBS is a data driven approach. We can subjectively review the data collected and identify whether the intervention is effective, what is and is not working, and what changes may need to be made. Without this skilled review you may as well lick your finger and stick it in the air to judge whether what is being done is any good.

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PBS has a lot of potential to improve quality of support services for people with learning disabilities. But if it is to be effective it must be done correctly. If it is bodged together on the cheap and pushed through as something that can be done without clinical leadership it won’t work. It will be ruled out as another fad people have tried and been let down by. That would be bad for PBS and awful for people with learning disabilities to be let down again. We wouldn’t accept an unqualified professional to do any other clinical intervention unsupervised. Why should this be ok to accept for people with learning disabilities?

Positive? Who are we to judge the behaviour of others

The conflict between the scientific description of behaviour and everyday values about behaviour is one that those trained in PBS will be all too familiar with.

I have smoked cigarettes since I was 11 years old. It’s not something I am particularly proud of but I enjoy it. Does this make it a positive thing?

Society says smoking is bad. It is banned in most public places, they are hidden from view in shops now, and it is not that uncommon to get scowling glances from passers by. Does this mean smoking is negative? As I started at 11 the disapproval of others was probably a motivating factor and maybe something I still secretely enjoy, so positive right?

What we are talking about here is values and opinions. In reality, what I think about a behaviour or what you think about a behaviour will do nothing to change it. And who are we to judge the behaviour of others, saying what we think is positive or negative anyway? This isn’t how behaviour is changed, and it isn’t how Positive Behaviour Support works.

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When scientifically describing behaviour positive means adding to, negative means taking away. Just like how you don’t have a good side and a bad side of a battery. Some will scowl at me using the word “scientifically” (is their scowling positive or negative?), but we need to dissuade those in caring/supporting roles from making opinionated judgements about behaviour and promote an objective, evidence based approach.

Smoking is technically subject to negative reinforcement. Inhaling smoke takes away the pangs of nicotine withdrawal. It has probably picked up some other deviant reinforcements along the way, which is what makes us as humans complex, what makes behaviour so fascinating, and ultimately what makes behaviours like smoking hard to change.

Traditional approaches to stopping smoking, similar to approaches to challenging behaviour, have largely been focussed on how do we take this behaviour away. From going cold turkey to sticking patches all over yourself to wean you off the nicotine.

Positive Behaviour Support would look to help the person achieve the same function in different ways, and those ways have to be easier/more efficient than the behaviour you want to make redundant. This partly explains why e-cigarettes have been credited in the news this week with helping achieve the lowest smoking rates in the U.K. ever recorded. You use the same behaviours of inhaling and blowing out “smoke” to remove the nicotine withdrawal pangs, its cheaper, it has a pleasant(er) smell, and can be done in more places with no mess and less risk of burns.

I’m not making any promises to give up smoking anytime soon. But your judgements about whether smoking is a “positive or negative” thing won’t be what changes my behaviour. It will be understanding the reinforcement/function and providing functionally better options.

Peer pressure and opinions can act as a motivator to change behaviour but won’t change it in itself. I think I’ll save that for another blog though.

Bridging the Gap

By Jen Fookes. Mum.

The gap being the divide between them and us. The parent carers and the professionals. 

Some professionals bridge this gap really well with open arms and enthusiasm. Understanding full well the benefits and it’s just the right thing to do. Others unfortunately still do not. I still see many battle weary parents seeking support. When trust and faith have been lost it can be devastating for families. “The mother who was strong, broken” expressed this in an earlier blog post in a very hard hitting way. 

So why the gap? My thoughts.

Historically there has been a cultural intolerance to people with learning disabilities. Superstition, persecution and rejection. Even entertainment in the form of freak shows and the village idiot. Things may not be as extreme today but we still feel its presence. 

Historically our children would have been shut away.

Many would say they still are. 

Historically our children would have been inhumanly left to die.

Many would say they still are.

These statistics from Mencap are shocking. They are only some of the very very basic needs that families are asking for, and why we get described as difficult.

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Some professionals still do not see family carers as an important part of their child’s life when they go into the system. They don’t understand a parent’s journey in todays society. They don’t always spend any time with us to get to know us as people. Just an hour in a review once a year. Parents can be blamed for their sons/daughters behaviours. As families we can be labelled as dysfunctional. Jargon is still used so we don’t always understand. Professionals focus on legislations, procedures, guidelines etc  families values and feelings don’t always get a look in.

And with on going cuts to the health and social care systems seemingly targeting the most vulnerable in our society. It makes me feel my son is not a valid equal member of our society. And without real working together neither am I.

Sometimes it feels like there is deliberate exclusion, tokenism and lip service towards parent carers. And still many assumptions are made. Systems are not always family friendly. Emotional manipulation, passive aggressive ways and carefully veiled threats are still used as a show of power.

For those families who want to stay involved a family-centred practice would be a great way to work together. Studies show when families are viewed as important then there are better outcomes for the child/adult which benefits everyone.

So even though there may be a cultural shift in the way some professionals work it is still a postcode lottery. Many parents now want more than just to be informed or consulted. We need proactive collaboration as a matter of course not just seen as good practice, for those families who want to work alongside proffesionals in valued working relationship.

And maybe if society sees parents and professionals working together positively with people with learning disabilities then as Learning Disability England says;

Stronger, Louder, Together. 

Change will happen.  Isn’t that what we all want?

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Positively Bull S**t (fake PBS) rule #1 – behaviour is triggered

I saw this picture on Facebook:

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This is great awareness raising for people who don’t understand autism or behaviour to help them be mindful about things that could lead to distress for the person and behaviour that they will find challenging. But there are problems with the notion of behaviour being triggered.

From my perspective behaviour is not triggered. We select the quickest, easiest and most effective behaviour we have in our repertoire to get what we need. The triggers described here don’t trigger specific behaviours but signal that a reinforcement is available (and probably desperately needed in these situations). I’ll try and explain.

Noise = the reinforcement of escaping that noise is needed. So do you select to smash the noise in the face or run.

Proximity = reinforcement of escaping the proximity is needed. So do you punch them to make them go away, or make loud noises so they move

Change of routine = usually this means a sensory reinforcement needed, i.e. I need to express I am distressed/let these feelings of distress out and maybe you will help me escape the distress – which behaviour can I choose that will express this most effectively.

Being ignored = reinforcement of attention is needed, so do you pull your trousers down or hit the person they are paying attention to so as you are the focus of their attention.

If all we think about is triggers all we will think about is how do we avoid these triggers. How do you make sure a person never experienced noise? Without building a 1 meter bubble around people how do you avoid people being within that persons proximity? This approach leads to reducing what is in people’s lives rather than helping them to learn, develop and have more things in their lives.

The behaviours we choose when faced with these “triggers” depends on what we have learned or know works. If we think function and how do we help the person get to these functions better we will help the person to learn more behaviours that they can choose in these situations and give people  more opportunities and get what they want better. We will stop just removing things from people’s lives and only having restrictive practices in our toolbox.

This is what it means when it is said PBS improves quality of life. Not the Positively Bull S**t of if we avoid all triggers we will have no challenges.