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Positive Love Support

April 30, 2017

Was yesterday National Positive Behaviour Support Day? Or has it been the whole week? The reason that I ask is that my social media timelines have been choc-a-bloc of adverts for PBS, blogs on the subject, Youtube clips. You name it – PBS has been omnipresent.

It’s no secret that I struggle with PBS. Obviously it goes back to Steven’s time in the Unit and their zealous approach to the topic. Every new initiative was presented like a cure for cancer and woe betide you if you questioned the validity of such a model. We had the introduction of the alarm clock that would be set for a specific time to let Steven know when he could do something he had been asking for. One Saturday morning, he woke up asking to watch a Mr Bean DVD and they set the alarm for four hours hence. After two hours, one of the residents threw the clock and the shift leader reset it for another four hours. After asking at 8pm, Steven eventually got to see Mr Bean at 2pm, at precisely the moment I turned up for a weekly visit. Then there was the time, the experts decided to scrap all of Steven’s coping mechanisms and introduce new ones. At the gym, his routine before he started training was to touch each of the photos of the gym members on the wall. That was stopped and they printed off some pictures of the gym equipment Steven was about to use. We then had another risk assessment and support plan to refocus Steven from the members’ photos to the equipment photos. I could give scores of examples of these approaches.

The big problem was that the Unit were totally convinced that their’s was the only way that worked. And when the Court psychologist wrote his report, the first paragraph included the shocking phrase, “Minimal attention has been given to Steven’s autism”. If you are going to deny an important part of who he is, any strategy is likely to fall flat on its face.

The other major issue was the Unit steadfastly refused to acknowledge any part they might be playing in the behaviour that they were so committed to correcting. In the many paged reports of Steven’s escapes from the Unit, there isn’t one single consideration given to what they staff were or weren’t doing to enable the escape. There were no positive behaviour support plans to enable Steven’s request to have a male worker attend to his personal care, so when a female staff tried to apply his excema cream to his groin, all hell broke lose and Steven’s distress was used as further evidence to keep him in the Unit. The whole PBS was a shambles.

I know what will happen when I post this blog. It happens every time I write about Positive Behaviour Support. I will be inundated with messages from the PBS crowd telling me that I’ve got it all wrong and that I shouldn’t dismiss a whole model on the basis of one bad experience. I can actually. Sometimes, an experience is so wrong and so traumatic that to try and go through the experience again to get a more favourable outcome can be too much to bare.

I remember an early lesson I learned in my counselling career. I had been doing telephone assessments all day and my job after doing them was to speak to the manager to match the new clients up with counsellors who had available spaces. I’d spent over 90 minutes on a particularly tricky assessment and towards the end of the conversation, the client mentioned that she had been to our agency before, about four years previously and asked me not to match her up with the previous counsellor. I knew who she was talking about and it was a counsellor who favoured a rigid psychodynamic approach. The client told me how scarred she’d been by the earlier sessions and it had taken all her courage to make today’s call. I admired her greatly and was hoping that I would be able to see her myself. However, when I spoke to the manager, I was told to get back to her and inform her that the previous counsellor was the only one available and that working through the issues from the previous counselling would be an invaluable experience for her. There was no room for debate or discussion. That was the what I had to tell her. The follow up phone call was ghastly and not unsurprisingly, she declined to proceed.

Yesterday, I suggested to Steven that we did a music DVD session. It was a regular on our weekly schedule for over 10 years but since we moved, Steven has dropped it from his weekly routine. He was very up for the idea and we had a great two hours playing a vast repertoire from The Beautiful South, through to Barry Mainlow via Steps. We made no reference to the positive behaviour support plan at all. In fact, I’m not sure where they are anymore.

I favour love. Positive Love Support. It goes a long way and gets a lot done.

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24 Comments
  1. The treatment of autistics in this country is appalling.

    The reason being, the worse behaviour is made by such treatment, the more medication is justified and the more medication is administered.

    And the greater the money that can be claimed, by private for maximum profit providers..

    All treatment/care is prescribed, and must be carried out to the letter of the bureaucratic procedure, deliberately so, as those actually enforcing all this ‘theory’ and ‘therapy’ are generally zero hour itinerant staff, who themselves are managed.

    The nube of the matter is that despite the billions spent on autism in USA , UK it is not understood.

    The effect of Autism per se is not even mentioned in social services meeting. And autistic children are being deliberately treated as Children in Need under the Childrens Act, so that historical abuse/neglect can be built up against parents, and care orders used to enforce expensive residential schools and medication continuing for life under the MCA.

    Millions has been collected by charities for supposedly promoting ‘autism awareness’ ,yet the Autism Act is ignored by all services,and LA enforcers, as it can be, as it has to be enforced individually by judicial review which is practically impossible-HUGELY EXPENSIVE and legally very very difficult.

  2. Carole CLIFFE permalink

    With you all the way its just a school of thought however i think they need licensing before its inflicted on the vulnerable. My experience is where my boys behaviour was always viewed by his special school as “naughty” and thereby in need of correction rather than in truth being a response to others practices exacerbating his spectrum autism and brain injury. I am dumbfounded by those who expect someone with a brain that fundamentally through medical conditions functions differently to work in the way their own does in other words conforming is the only option out there even with the expectation coaching will make you normal!! …..what gets you there is reinforcement, familiarity and consistency few things our children ever experience.

    In the school setting there was simply too much inforamtion for him to process and learn but requests for a shorter timetable (just mornings) and him working in a group of no more than 3 were ignored (despite hearing and neuropyscholist requesting same). Instead he was enforced to be in larger groups with the outcome his learning decreased and his frustration increased and i paid the price for that however the school labelled his challenging behaviour as bad parenting!! This was completely disproven when he went to college and an environment that listened. He attended for just mornings and within 6 months i had a different young man who could COPE!!

    To remove the ignorance with school i took in two leading experts in the field of Education psychology and Neuropsychology who pointed out his behaviour was response based or a secondary factor of his complex disablity rather than “naughty yet the school headmaster a rather egotistcal man who believed he was god merely did not want the disruption my reasonable requests would stimulate and refused to comply with those reasonable requests!.

    At shcool My boy was viewed as disruptive and thereby had to learn to wait and/or take turns so explain so me how you do that when within minutes you have forgotten what it was you were saying! The strategy implemented was for him to put up his hand and wait his turn……yes you guessed it he developed a stutter trying to hold on to what he needed to say and/or he’d forgotten by the time his “turn” arrived. Not only that we he was laughed at extensively when he put his hand up to speak in general settings like a cafe when in a group of people chatting it took me three years plus to unpick that stupid strategy. My experience is one like you Mark that rather than reflect on their own practices and how they impact on the individual they rather have an expectation the indivdual will aquiese to their school of thought. The danger is its all a black art for those giving distanced support

  3. simone aspis permalink

    Yeah ditto there were many disabled students with undiagnosed autism in one of those expensive residential special school I attended – seen as naughty children. I am one of the fortunate ones that I survived – I know many who have not…… The problem is the premis of special schools – they are no difference between psychiatric inpatient places – emphasis on the medical model of disability and normalising the disabled person – RSS and SS and hospitals and Assessment and Treatment Units are ALL THE SAME – start from the DEFICIT model. RSS and SS are the precursor for life-long institutionalisation. Please see ALLFIE’s submission to the Christine Leverhen’s evidence on RSS and RSCs .. Please click onto this juicy link: http://allfie.org.uk/pages/work/press.html If we want to see a closure of these psycratric inpatient places then we can not do this without campaigning for the end of segregated education – please join us – we need to join the dots up…..

  4. simone aspis permalink

    I like that one Positive Love Support – I should emphasis the need for a shift from Positive Behavioural Support to Positive Wellbeing Support – (noted!)
    I do not get it – about the ATU – is not Steven toughing photos of the gym staff is about making the social connections and environment to the gym???? Gyms have a social as well as the physical dimension???

    • simone aspis permalink

      I meant gym members

    • Exactly. He was far more interested in the photo of John from the florists than the picture of the leg press.

      • simone aspis permalink

        I often look at the pics of the professional pics of people exercising – I am hoping to find a few of disabled people doing body attack, body pump etc. It seems the only pics there are of disabled sports people are those swimming!

  5. I’ve always brought up ‘love’ as a very big need, and I dislike the ‘behaviour’ in PBS and would prefer a different word, as behaviour is seen in different ways by different people.
    I think it should be Positive Communication Support, or something else.
    Professionals and service don’t understand autism in the individual, but generalise or look for commonalities more than tailored approaches.

    • Sorry, I meant also to say..
      PBS is supposed to be as person-centred as possible as based on Applied Behavioural Analysis, so whatever the person wants should be respected (such as Steven wanting a male staff).
      PBS should be a positive experience, and if it is a shambles, it’s not been done properly.
      I suppose the idea is good, but it needs to stick to the principles.

      I feel the word behaviour should be replaced, because, we don’t refer to each other’s ‘behaviours’ in normal everyday conversations, but ask deeper questions of each other. So why is the subject of love in care avoided?
      We can’t live without love, any of us. The word behaviour as the key word doesn’t feel right.

      Positive Life Support is a term I’d prefer.

      • simone aspis permalink

        I am finding all this very useful as I am doing advocacy at the moment……

  6. I think it’s the word “Positive” that’s the problem. People (including the so called “pbs people”) understand the word positive to mean good. Who gives anyone the right to judge what is good for someone else. Positive means adding, like on a battery. We need to respect what people have in their lives and add to it rather than focussing on reducing what people have or do, and trying to disguise this as a “Positive” thing doesn’t make reducing people’s lives, interests, or repertoires ok.

    • How about proactive?
      I think the positive is telling people to be positive too – it’s like Positive Parenting, which is like adults telling other adults what to do.

  7. Pauline Thomas permalink

    How does Positive Behaviour Support work when the person receiving the support is behaving badly because of the side effects from antipsychotic medication?

    It is like getting someone drunk and expecting them to walk a straight line. Can’t be done.

  8. weary mother permalink

    All of the above can assume that the motives behind this methodology are always altruistic ?

    For many people with learning disability living ‘independently’ in community this can be called ‘enabling’.

    For example: a short burst of ‘enabling’ in cooking and dietary skills sessions with an OT service can be paid for and provided by NHS.

    This ‘enabling’ is achieved after assessments by clinical psychologist, and can take 2 years on waiting list while these needs and who pays is argued – LA or NHS.

    NHS funded OT sessions provided ; individual deemed ‘enabled’ by LA who tick the ‘enabled’ boxes and former support is withdrawn.

    Outcomes:

    LA support costs cut.

    Learning disabled person feels has failed, but in reality too learning disabled etc, to be so speedily enabled and left ….

    Confidence and self esteem reduced..

    Has enjoyed the OT sessions and the fresh personal contact, and person also misses former LA support worker, so gets more depressed and health goes down hill.

    Now more Isolated, eats junk, malnutrition starts, gets sick – alone, more isolated and lonely..and now chronically sick. A late crises intervention by LA and hospital admission..

    LA now on waiting list for NHS funded support/access to primary health care and NHS refuses responsibility.

    LA agrees needs and responsibility to support….

    But potentially……while waiting etc etc .

    Person dies…..20 years too early…

    …… ‘enabled’.

  9. Dorothy Jump permalink

    I am at present going through behaviour issues with my adult son who was diagnosed with Autism last year and also has a severely Learning disability and epilepsy. I have had many years of changes with him and this firstly changed from a visit to the consultant relating to seizure in put and medication changes which then caused erratic behaviour so I then was involved with a challenge to correct this and still am trying to correct it has been positive at times but I see changes and as a parent I see the environment and services have some some effect on him. He has also had a Mental health assessment at my request due to his low mood not being motivated and wanting so sleep,bowel issues and I related this to anxiety and depression and this was diagnosed with the consultant psychiatrist and has been prescribed antidepressants. All requests I challenged has been positive.
    My son did pick up and was better but still issues around change and routines just a change in routine. Also his respite place had closed so now has another place which this is a major thing for him, what annoys me is services say he has been ok and he did seem settled at respite but since coming home I have found he is stressed with me and routine is poor. I could say more but it’s a long issue. He has an issue with making himself sick and again he has been doing this at Day centre then they tell me he is fine in my eyes he is not and a connection link is causing him issues I think but due to communication issues with him it’s hard to understand at times what the problem is. I have asked for a New assessment to be done for him, to pull everything back and start again to see what mistakes are happening and to make his life more in control for him I did talk to a solicitor about this also and got advice. Finally I have an assessment for this week and I need all the team to listen to me and it is not what they always think. Autism links also I feel they do not understand the over sensory issue with my son and this leads to melt down and I feel this is what’s happening he then goes into defence mode.
    At present he has gone to respite I am not well at present and have to go to hospital this week and the fact is I think this is an overload of stress related issues and constantly fighting the system to listen to me. Hopefully I will get action and answers. Appalling how things turn out but I am a fighter and I will get this right for my son. Just wanted to explain how things are because services fail us.

  10. Pauline Thomas permalink

    Dorothy I hope you get your health back. I hope at the review they listen to your concerns for your son with empathy, but most of all with action. Often promises made at reviews can be so easily broken. I hope this does not happen in your case. Good luck.

  11. Excellent blog as ever – and thought-provoking. And – as usual – some really pertinent comments from people.

    I don’t want to come across as anything other than supportive of your Blog, horrified by the abuse, aghast at the continued incompetency of service provision, and angry at what is offered like crumbs from the captain’s table, and I want nothing more than to give strength to your elbow, or a tipple to keep your voice going.

    I’m also a bit of a PBS-head: PBS is a spectrum of abilities, but it has a triad of impairments (unlike people with autism, or autistics, or Aspies, ASC, whatever the individual prefers).

    Impairment One: the values-derived origins are at risk of being subsumed in a renewed focus on technology trumping other aspects of PBS: if this continues PBS will be viewed as having a limited range of interests so ingrained it might be pathological in nature.

    Impairment Two: PBS practitioners and journals need to get better at social communication, otherwise PBS will be viewed as having a theory-of-mind problem, namely, it doesn’t matter what others think or believe, it is only what PBS practitioners think or do that matters.

    Impairment Three: we’ve been so intent on building up the definitions and certifications and expectations and specifications of PBS, we’ve systematised ways of working without emphasising it’s about delivery a good quality of life. Simple as that. The person shows and tells us what they need for a good day, and the approaches embedded in PBS help the person get there. End of story.

    These impairments can be applied to most technologies, by they way. PBS practitioners don’t have an exclusive on getting things wrong. But I’d suggest many PBS practitioners are actually the fierest critics I know of dickheadery, sanctimonious hypocricy and crap situations in many places affecting people labelled as vulnerable or disabled or any other dehumanising terminology that’s out there. Winnie-the-Pooh said (well he didn’t, he’s just a made-up Bear, but you know what I mean), when Rabbit pointed out something didn’t make sense, that at first the situation did make sense, when it began, only “something happened along the way”. I think something happened along the way to community support, and supported living. I think that something is managerialism in local authorties and professional self-interest and business/market economics.

    [I think any technology can be used to primarily benefit individuals or primarily benefit those controlling the technology: “Give someone a hammer and soon everyone begins to look like a nail”- and Skinner said as much when he wrote about behavioural technology being ‘valueless’, like gravity, it just works.]

    I think PBS is only as good as the people making use of it – are they intent on contributing to someone’s goals, to someone’s quality of life, to love, to identity, to making life a bit easier for families? Or are they seeking to keep themselves in employment? Or ration resources? Or control?

    I don’t think any unit can enhance quality of life, and so I don’t think it can claim to be or do or represent PBS. A unit by its very existence represents only itself: not people with disabilities, not best practice. It’s like a psychiatric ward claiming to be a thereapeutic environment when the doors are locked and the word ‘patient’ underscores every measure.

    I’ve seen (because I’m an old fart) people mis-use person centred planning (quite an achievement), normalisation, most of the ‘terms’ or ‘movements’ intended to give voice to devalued people, in order to benefit themselves. My concern with PBS mis-use (like mis-use of ABA) is the sheer potential harm because of the power of it. But I also know people are pretty good at resisting intolerable situations.

    If it the end result is a person’s quality of life isn’t enhanced, if their voice is not heard more, if more effective behaviour isn’t learned by the focal person and the practitioners, then it ain’t PBS, whatever the fancy websites say. PBS that isn’t person-centred isn’t PBS.

    PBS has become a broad term, misused and abused. The origins of PBS included a ding-dong discussion ‘in the trade’ about whether to use ‘behaviour support’ or ‘behavioural support’. What term is used (Life Support, Good Support, Positive Support, Behaviour Support, Active Support – the list you can come up with is endless) isn’t so important. It will, as a term, a short-hand, be misapplied by those intent on keeping to ‘business as usual’. It’s about what people do and how people are treated that really counts. I’ve visited places doing some excellent work they call PBS, and places doing horrid things they call PBS.

    My conclusion is this isn’t so much about PBS, but Arseholes. Give an Arsehole a crash-course in behavioural tech and they’d screw it up, but these people would screw up a two-car funeral, or a party in a brewery, too; they’d screw up person centred planning. They’d s screw up democracy… oh, wait.

    PBS doesn’t exist outside of people’s heads and hearts. PBS can involve functional assessment, but I’ve seen enough shite functional assessments by highly qualified people to know good work is more than following a protocol that produces a functional assessment (I’ve said to some “You’ve produced FA, not a good FA”). PBS is more about values, and being person-centred, meaning asking, learning by listening to the person.

    PBS is like the Curate’s Egg. But there are plenty of people working hard to get PBS better, behind the scenes, calling Arseholes to account. It might be time to reformulate what we call PBS into something Arseholes don’t like, but I think human history teaches us Arseholes populate most niches, given time. So we keep reformulating, rephrasing the basic approach: being evidenced-based by decent humans.

    Sorry to witter on like this. I’ve done more moaning and kvetching on my own website http://tonyosgood.com/ but suffice to say I like your Blog enormously – so keep writing your excellent Blogs – good luck with the literary ambitions – and never accept shite from Arseholes. And if I come across as an Arsehold myself, I sincerely apologise, that is not my intent.

    OK, I’ll get my coat now.

    • It definitely should be about doing what the person wants, and in ABA is supposed to be that, but often in practice isn’t – except in a tokenistic way.

      Re rethinking names again, how about calling it PCS – Person Centred Support? I think people and family views should be at the forefront wrt renaming PBS.

      We have person-centred plans, mostly in danger of being written into PBS goals set or influenced by others on the basis of lack of capacity, and then wonder why it’s not working.
      I agree, Tony, some PBS is done well, other PBS not, dependent on the intelligence of people designing the plans.

  12. Sally permalink

    Mark, some of Steven’s behaviour you describe which they were attempting to alter don’t sound very problematic to me. Was the photograph ritual at the gym a problem? Were the photos., for example crashing off the wall? It doesn’t sound like worth the upset of trying to alter-surely there were more important things to try to help,with?
    If not a big problem , why do anything? Or ,at most why not try to replace touching the big versions of the photos with touching the same photos but in say, a small flip book and see if that is acceptable ? Why would anybody want to replace a photo of a reassuring face with one of a piece of gym machinery?
    I don’t understand why staff can be told 100 times someone has autism yet still be taken aback by behaviours which are easily understood with that information.
    The number of damn times I have been told what my son has done and given no information about the precursors to the behaviour. Never, ever has it been considered that staff have contributed. For all the damn ABC charts suggested, never once has a staff member’s behaviour featured as a trigger.
    And , never has a staff member said “we have learned from that episode that we should.What we think we got wrong was……”

    • No, touching the photos was never a problem. Steven seemed to get a buzz out of recognising familiar faces. There was always a reassuring routine about it.

    • Of course staff wouldn’t admit they cause triggers.
      Most staff are not exactly bright enough to analyse triggers, and it’s easier to blame the person anyway. Or devious to not really work at changing their own behaviours.

      Touching photos might be reassuring – in some people even an OCD-type of thing, which relieves anxiety – autism is like that anyway.
      If he got a buzz out of it, and it wasn’t detrimental, it was a positive activity – so these people doing the PBS plans sound a bit thick.

  13. simone aspis permalink

    Mark Tara has given you a big ALLFIE tweet

  14. simone aspis permalink

    The one thing I am learnt is that there is a denial of the person being disabled requiring reasonable adjustments rather than being forced into behaving in ways that deny their identity – Good to be doing advocacy again – much more interesting and rewarding than this bloody MPHIL project I am trying to get done!

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