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.

Action. Not pity

Yesterday we shared an anonymous blog.
The Mother who was Strong, Now Broken. This was by far the most read blog I have ever published here. Why was it so popular?
The comments on the blog, Facebook, LinkedIn, and everywhere else spell it out clearly. This Mum is not alone. Her words resonated with a lot of parents. She said what others have been saying. She spoke for the thousands of parents who are thinking and feeling her words everyday but are too scared to share.
All parents, whether your child has a learning disability or not, are conditioned to feel like you can never do good enough. When you are a parent of someone with learning disabilities you are also often thrown into a world of fear. Asking for support makes you look weak. Asking for better services and you get labelled “difficult”. You worry what will happen if you say you cant cope. Feeling constantly judged and can never do right. Your child is your world and then they turn 18 and they say your role becomes irrelevant. You may be threatened with safeguarding procedures, protection orders or hospitalisation. All you want is what is best for your child. But these fears are confirmed again and again.
I am very privileged to know the Mum who wrote this. She really appreciated seeing all the comments and hearing that she was not alone. She has been moved by how people have been able to connect with what she has said.  However, I know what she would hate to become an object of pity. Pity is an emotion that drives inspirational porn.
What this Mum wants is what every parent wants. Action.
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The actions we take will be different for each of us. Here are some ideas of actions you could take. If you are reading this and have other suggestions please leave a comment.
Parents need hope.
If I was a parent of a teenager with learning disabilities right now I would be petrified.
Everywhere you look there are news items or parent accounts of where things have gone awfully wrong and where services are failing. We need some publicising of when things go well, how to get things right, and what works. Life hacks for navigating support for people with learning disabilities. There are some difficultieswith this. If providers do this then it looks like self serving PR material, so any resources shared should not be affiliated with specific providers/trusts.
Also, parents fear sharing good stories. When they have hacked the system and got things right for their child, if they share it would other parents disapprove.
But without the good news stories how do parents know what good can look like? How can they have hope for their child?
How can other services learn what works and further develop this?
We would love to share parents stories of what has worked. If you would be interested in submitting a blog, anonymous or not we would like to help you share it. If you are a professional who wants to anonymously/selflessly share what you or your team has done that works the same applies.

Support the work of the ATU Scandal and The seven days of action and of course  #LBBIll 

The percentage of people with a learning disability in ATU settings is low. But this does not minimise that the awful experiences people who have been admitted to them and their families have had is unacceptable. And it affects everyone. Whilst it is a small percentage of people who have been admitted the fear of your child being admitted petrifies all parents, and many parents have experienced real threats that their child will be admitted.
These two campaigns have united parents through social media and exerted real pressure on government, public services, and providers. Things are changing because of parents collective voice. Because more and more parents know they are not alone.
Follow these groups on Facebook, Twitter, and their blogs. Support their action where you can. Be part of a community.
Treat the cause of the problem and not the symptoms.
The so called action post Winterbourne View focussed on closing hospitals and discharging people. The progress was notoriously slow. It seems to be improving now, but the problem with the action was it was focussed on closing hospitals and discharging people. It didnt address the reasons people were admitted and the reasons people could not be discharged. People were admitted because their local services had failed them. People couldn’t be discharged because there was a lack of competent services to discharge people to.
We need to focus on delivering high quality services in peoples homes to make ATUs redundant. THIS is what Positive Behaviour Support is about. Shift the focus from reducing the problem to increasing the answers. If we don’t increase the answers the problem will just move. More people will be admitted to mental health wards who do not understand the needs of people with learning disabilities and the environment is totally unsuitable. Or people will be detained in police cells and be subjected to the criminal justice system.
There are examples of effective support out there. We need to share what they are doing well, support them to succeed, and inspire innovation.
Strive for real personalisation.
Personalisation has a lot of potential to enable people to achieve the support they want. But there is a risk it will be another term picked up by scrupulous providers to label their packages with. There is a risk it will be used by commissioning authorities as a money saving exercise.
Parents want more choice and control.
This doesn’t always mean they want to be employers, micro-commissioners, or service managers. Parents need to be heard, included, involved. How they want to or feel able to be involved will be personal to each parent.
We need to increase the range of services that personal budgets can be used for, and ensure that genuine personalisation underpins all service types. Make working in partnerships with families the norm.
Put an end to PBS ~ before you start checking what medication I am taking I am referring to the Positively Bull Shit.
Post Winterbourne View nearly every government document has mentioned Positive Behaviour Support. There was a lot of concern at the time that this would lead to a growth in the Positively Bull Shit market.
“Professionals” and providers without fully understanding what PBS is about, saying they do it when they do nothing of the sort. This isn’t helped by reputable organisations provide sub-standard training, and attempts described as tackling the issue of pseudo PBS also water down what it should be. Many parents have shared with me that they have received PBS and it was rubbish. Sadly, these experiences are real. And this is because there is a wealth of Positively Bull Shit providers out there.
PBS has a lot of potential to create meaningful and effective support for people with learning disabilities who show behaviours of distress. It will be totally ineffective if it isn’t done correctly. In no other arena would this be acceptable. It’s like going for kidney surgery and being told the porter is going to do it because he knows what a scalpel is called and he went on a days course about kidneys.
Maintain expectations of high standards from services for people with learning disabilities. If a service is saying it provides PBS, or any other approach, ensure people have appropriate qualifications to deliver this and that it is being provided to a credible universally accepted standard.
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Action
I am sure like me that you will find hearing parents experiences heart breaking. The ones we hear are the tip of the iceberg. We need to keep hearing them. We need to reach out to parents so as they know they are not alone.
Equally, we need to encourage growth of what works. We need to find people and services that are committed to this, share what works, and enable a growth in competent services. This will help raise standards and quality of what is available. It will help parents to have hope and see action. Enough words. #makeitso

The Mother who was strong, now broken.

The following is an anonymous blog we have received from a parent. We will give the powerful messages it contains its own space and follow this with a response tomorrow.
Years of the rollercoaster. Years of lurching from one difficult situation to the next, sometimes without a break. Chronic stress. Year in year out. Unrelenting. Takes its toll.

Care Staff don’t see my history. They just see the ‘now’.

And it’s not all about my child in my life, there are other things that come along too. You can only stretch so far. You only have a certain number of spoons.

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I’ve seen my GP, I’ve done the token carer’s wellbeing courses, the CBT training. But that doesn’t change the system that my daughter is in. It doesn’t change the outcome, to use their jargon.
And one day a situation comes along that is the straw that breaks the camel’s back.

Dear Care professional,

I am ready to die.
I have tidied the house.
I have made my will
I have written a letter.

I have let my disabled adult daughter down, I have failed her. Everything I have done for all of her life, was for her and yet it is not enough.
But I have not been able to make sure she has the life she deserves.
I am not enough.
I’m a bad mother – a failed mother.
I am so sorry my beautiful daughter.

I have so much pain so much anger and I don’t know how to deal with it.
I have no solace.
And no one cares.
Even the carers’ assessment doesn’t care.

I don’t see the government making or wanting to make any significant investment in any sense to the social care system at any time soon.
The government and the media have poisoned society against people with disabilities because of their own ignorance and fear around what they think is a waste of money.
Apparently disabled people don’t contribute. Disabled people not only cost money they drain money away, they give nothing back to society.
They are scroungers.
Employers don’t want to know. Ramps and bars to hold are one thing, but understanding, recognising and accepting equality are quite another.

Professionals are too busy writing papers with pretty soothing meaningless words – lulling you into false beliefs. Whilst the frontline staff struggle to make a living and make a difference.
Carers are even more wretched, invisible and disregarded.
Or that’s how we are made to feel.
I’ve witnessed first hand the cruelty, depression, oppression, neglect and abuse that is imposed on our fellow humans – our children.
As a mum I have been intimidated and threatened.

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Dying takes over my thoughts, I am soooo tired with the system slowly suffocating me, I have to give into it. I don’t want to wake up. Sucking me into oblivion, peace.
I can’t hold my mask up anymore it is too heavy. I am not brave or strong. I can’t do it.
I can’t even close my curtains at night.
How can I be heard in a system stacked against vulnerable people? It doesn’t just wear you down, it pulls you down. It’s a black hole sucking you in.

As a mother, putting your child first is your dominant thought and it is all encompassing. Your child needs a mother’s nurture, protection and love. It is innate. It’s not co-dependency as they try and make us believe.
And yet the system says that on the day your child turns 18 you do not have the right to be a mother in the way you were the day before.

It feels like a battle ground – but I don’t want to fight.
It feels like they are on another side – but I want to work together.
It feels like money comes first – but they say person first.
It feels as though they have an ego power trip – but I just want ordinary
It’s feels like injustice – Prejudice.
It is – Indiscriminate and cruel.

I offer guidance from my experience, I offer partnership, I offer creative alternatives as I have spent years learning first hand from my daughter.
Apparently I am interfering.
So I am ignored. Belittled. Criticised.
No valid feelings. No respect. No human rights.
At times not even kindness.

After 18 years, my feelings and emotions as a mother do not come into it.
I am in-visible.
I am in-valid.
I am dis-abled.
I am de-humanised.
I am de-mothered.
My very essence is ignored, trampled on, stamped on.
This is what I have become.

This is what the ‘care’ system has made me.

My daughter has to get used to living without me anyway, so I have nothing to live for. I can’t make a difference. I tried for years…..I failed.
I’m a failure.
The impact of the reality knocks you down – over and over. I can’t get up again.
I can’t endure another tomorrow.
I’ve lost hope of change.
I have simply lost all hope.

With best wishes
From
The mother who always smiled, now cries.
The mother who tried, failed.

The mother who was strong, now broken.

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Function function function

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This week has seen the launch of the guides for families for PBS by the PBS Academy.  I was one of the original contributore of the PBS Competency Framework so I support what they are trying to do. However, I would like to raise some supportive questions in order to improve the services people with learning disabilities receive.

A rough scan of the documents here and I estimate 80% of the content is good person centred planning and not PBS. A key aim when developing the competency framework was to clarify what PBS is and stop the increase in practice that says it is PBS when it is not. Are the PBS Academy achieving this and helping to define the difference of blanket improvements to quality of life compared to quality of life improvements that are related to the functions of challenging behaviour? Do these guides help families differentiate from services that use PBS and services that use person centred approaches alone?

The documents describe functional assessment but don’t provide a lot of detail on what the markers of a high quality functional assessment should be and who is qualified to undertake this. When PBS is being promoted as the answer to the post Winterbourne agenda is the PBS that these documents describe going to be enough to support people with learning disabilities and complex challenging behaviours to live in their own homes safely? Will it prevent the heartbreak families face when homes and placements break down and admission or arrest occurs?

We do a functional assessment to design function based, instead of behaviour based, interventions. This cognitive shift is central to the success of PBS. However, the guides for families only discuss primary responses to behaviour (green), secondary responses to behaviour (Amber), reactive responses to behaviour (red) and post incident responses to behaviour (blue). Where are the plans to meet function? There is no discussion about how we support people to learn functionally equivalent behaviours (positive programming), how we ensure these new behaviours are more reinforcing (focussed strategies), or how we change the ecological factors to support the new behaviours to happen more (ecological strategies).

The core underpinnings of PBS is to make challenging behaviour redundant by understanding the function and giving people the “disruptive technologies” that make the challenges redundant by increasing skills.

Is this a missed opportunity by the PBS Academy by not fully representing what quality PBS is about? Does this support the acceptance that people with learning disabilities cannot develop further? Instead of a constructive approach to PBS, supporting people to continuously develop, the guides seem to support the assumption that all we have to do is manage what we are presented with (in a proactive way) instead of having aspirations for people to develop and continuously grow.