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Modifying Behaviour vs Safeguarding

August 19, 2014

I read two updates today from two concerned mothers, both with children stuck in unsuitable placements.

The first, from Helen Ashby, described her son Dave’s distress yesterday. Dave has autism and downs syndrome and for him routine is vitally important. He likes to plan ahead and to be reassured about future events. Yesterday, at his placment (I hate that word) he was asking for reassurance about what he would be having for his next meal and who would be supporting him on his next outing. The staff couldn’t answer him as the rotas were locked in the office and nobody had a key! Cue an evening of increased anxiety and the possibility of a meltdown.

I’ve written before about the dreadful case of Claire Dyer, trapped in an assessment and treatment in Brighton. She has only been there three weeks after being moved by the local Health Board before her family had a chance to say goodbye. Each update from Claire’s mother is beyond sad. The Unit won’t allow to Claire to have her IPad and haven’t set up Skype, so she is unable to have contact with her deaf sister. The family are only allowed to visit for two hours a week and then have the indiginity of a staff member sitting in the room for the entire visit. Today, Cath Dyer described a call from Claire. Like Dave and many autistic people, food and mealtimes form an important foundation stone to the day. On Sunday, Claire had requested a cheese and pickle sandwich. When the time came, the staff served up a cheese and pickle baguette. This set off a meltdown. To be expected in an autistic person when the unexpected happens. The hospital’s response to the meltdown was to cancel her “ground leave” for a week. Ground leave only reinforces the prison image for me. And what good do they expect that to do. How can you be running the Race For Life one week and then three weeks later be detained in a room with only a TV or colouring book to occupy yourself because you are forbidden from going outside (we’re not even talking about going off into town here – she cannot even go outside into the hospital grounds).

There’s a massive gulf in what is permissable, depending on what side of the fence you’re on. If Steven had a meltdown and I subsequently kept him indoors for a week, this would be a safeguarding issue. I would be under the microscope and would , quite rightly be held to account for my actions. However, if I’m a professional working in an assessment and treatment unit, I can bring about a major restriction to someone’s liberty. All in the name of a behaviour modification programe. There seems to me to be a very fine line between a safeguarding incident and a strategy to modify someon’e behaviour.

This is all very familiar from Steven’s time in the Unit. When someone’s autism is denied, then I just see a disaster waiting to happen. Arrogant professionals believe they can change a behaviour that their environment and lack of acknowledgement has created in the first place. Common autistic traits are dismissed as willful behaviour and worse, become the focus of medical change programmes. It’s a Kafka nightmare. The big secret about assessment and treatment units is that assessment and treatment doesn’t actually take place there. They are cells – holding pens because local commissioners refuse to put a person before profits. They are the source of enormous income for the providers, usually with some murky private equity firm in the background. And to sustain this huge lie, Claire’s distress at getting a cheese and pickle baguette is turned into the raison d’etre for their existence.

I really struggle to see how the professionals making these decisions can sail straight past some real basic stuff. Every autistic person I know needs the reassurance of routine. As long as the basis of a routine is in place, much of their anxiety is kept at bay. Take that away and the anxiety of living  becomes unbearable. Steven has three charts on the living room wall. They are the most improtant things to helping him manage his day. The first chart has the photos of who is working with Steven that day. Steven takes charge of this when the support staff arrive in the morning. On this chart he also adds a photo of wherever he is going that day. The second chart is the food chart for the day. Once again, one of Steven’s first jobs in the morning is to put up the photos for his lunch and tea and his packet of mid afternoon crisps. The third chart records what DVD/video Steven is watching after breakfast and what our viewing will be that evening. It’s the same every week (Monday: Top of The Pops, Tuesday: Men Behaving Badly, Wednesday: Mr Bean, Thursday: Gladiators, Friday: Fawlty Towers, Saturday: Camberwick Green, Sunday: Coronation Street). Sorting out his charts takes Steven about ten minutes each morning and he’ll refer to these charts throughout the day. It’s not obsessive. It’s not inappropriate. (Two of the charges that were thrown at Steven by the Unit). I’d far rather see him compile his charts than be dowsed in surpressing medication.

Where is the voice for the Claires and Daves? Mencap are cosily ensconced in the Bubb group. Today I learned that the NAS get a significant amount of funding from a company that runs the sort of units that the government keep saying they want to close down. The deeper I get into the #LBBill, the more I learn about the politics of disability and the bewildering layers of self interest. And whilst the egos battle for supremecy, Dave doesn’t know what he’s having for lunch today because a rota is locked away. We cannot wait for the commissioners to spring Claire from her sentence – they are too caught up in block contracts and social capital. We certainly can’t wait for the providers to do something – they don’t want to lose their enormous profits. We cannot wait for the big charities to do something – their interests were conflicted long ago.

Now, if you’ll excuse me, I have to go. It’s Tuesday and Martin Clunes and Neil Morrisey beckon. It’s not Claire and Dave behaving badly – it’s the people charged with providing their care.

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From → Social Care

16 Comments
  1. kara2008 permalink

    Find it very hard to understand why so-called specialist services for adults get things so arse about face, when specialist services for children are so often so good.

    I’ve seen TA’s in a special school following a chart to position food an a plate for an autistic child who needed to have their food in discrete, separated groupings, and in a particular sequence around the plate, in order to feel safe to eat it. If they can, why not the allegedly more highly professionalised adult services?

  2. Well said Mark. If staff fail these vulnerable young adults for lack of a key or a slice of bread, then they should face lockdown or seclusion. See how they like it…

    • Pauline Thomas permalink

      Beautifully written Mark, and so agonisingly true. The power these so called professionals have over these helpless people makes me want to weep.

  3. KAL permalink

    As ever Mark you have hit the nail directly on the head – what is happening to these two individuals is beyond disgraceful. The RSPCA treat their animals with more respect and dignity then many families who have to endure these horrendous situations. As always it would seem that profit and convenience to these so called ‘caring’ organisations comes before what is really right for the people involved! Wrong on every level and as you say is why the #LBBill is essential!

  4. Alis Hobbs permalink

    Have just discovered that Ivan Illych (always a name to conjure with in my book) described these sort of treatments as Social iatrogenesis: “social iatrogenesis is the medicalization of life in which medical professionals, pharmaceutical companies, and medical device companies have a vested interest in sponsoring sickness by creating unrealistic health demands that require more treatments or to treat non-diseases that are part of the normal human experience, such as age-related declines” Effectively putting you in a mental strait jacket appears to be pretty much that.
    The clinicians concerned are so consistently at odds with the mental health act consultation document currently making the rounds, and the much vaunted ASD strategic Action Plan for Wales that you wonder if the professionals have actually ever got round to reading them?

    • So glad to see somebody has noticed Ivan Illich. I studied his Deschooling Society in the 1970s. He was spot on regarding how “professionals”,government organisations and business interests colonise and control personal thought and activity, making individuals dependent on them and rendering them powerless in directing their own lives

  5. There is no more to add to this Mark. I see this with my own eyes with Chris and Lynne. She is now formally labelled to as ” non compliant” this means your visiting can be severely curtailed or stopped. So behaviour modification is even greater. It applies to families too. It’s another world isn’t it. I find it frightening and shocking. The bill will raise the profile and hopefully change things for the better. But what can we do now? I’m trying lots of different meetings and suggestions for local support but feeling that we are drowning in treacle. We don’t want people with vested interests. Every person who has skills should be helping with this because it’s wrong. They have earned a living or are earning a living so this time do in your own time and give of yourself and show how genuine you are. You don’t gave to answer to anyone then. It’s liberating.

  6. Your last sentence says it all…..

  7. Compliance is a word that chills me to the marrow. The image is one of being forced to accept the directive of a superior power, being unable to challenge the validity or judgement of that power or question on what their authority is based.
    In the situations above it is institutionally sanctioned bullying of the weakest and most vulnerable.

  8. Where can we follow these two blogs?

  9. kara2008 permalink

    I wonder, as well, if there is a lingering notion that what one might call the ‘Hodges treatment’ for autism – basically thrashing a child out of it, as detailed in the early part of ‘For the Love of Ann’ (Copeland, 1976) – is a valid therapeutic procedure. It certainly plays into the idea that autistic behaviour is invariably wilful and ‘naughty’.

  10. My opinion – for what its worth – Child services WORK WITH parents who know what’s best for their child and what works – Adult services tend to WORK AGAINST parents and think they know it all – they indulge in power and control and manipulation because they can – because the SS and LA give them that Power and control and actively encourage that manipulation……. because it helps them keep within their budgets – fiscal duty trumps Best Interests. SS and LA and providers and even CQC are all intertwined in incestuous relationships – there is nothing independent about any of them….. its like a secret society filled with nods and winks and handshakes and it has been impenetrable – I feel that that is about to change……….. Oh and Im David’s Mum Helen Ashby

    • Pauline Thomas permalink

      So true Helen. Most decisions regarding LA policy are made in the Lodge.

  11. Weary Mother permalink

    Helen
    I spent my working life trying to improve the way LA’s and the NHS behave towards people that are not them.

    Some people join for power, some are quickly contaminated by the culture, other are so outraged by what they see and or what they are asked to do, they move on to voluntary sector or research or self employment, or all three ……or the job centre.

    Social work training did not, in my time, select for empathy or a willingness to work in an integrated way people outside their ‘profession’. I see little improvement currently. Social Work, whatever it is in reality currently, is very heavily status stratified and is almost like police or army in the pretty smart distancing from the infantry, as soon as promoted. In my experience it stops only just short of using police type sir and ma’m titles. Etzioni, I remember from my long ago A levels, included Social Work as a ‘semi profession’. So a bit of over compensating weight throwing, is also a possibility here. It is a paradox that complaints in LA’s produce a typhoon of witch hunt ‘who’s fault is it’, and a corresponding blast of blame, waffle and impenetrable jargon…. and eventually the ‘we have learned’ letters from Leaders. Yet few if any are ever sacked for even shocking ‘mistakes’. SW’s in my time were knee knocking afraid of getting it wrong. Today they fear their assessments and getting it too expensive and a rocket from the top, or so cheap it damages someone and ends up in the papers. And us on their tail.

    Put all this in a pot, skim the top and the curds ………………are what us and ours live with.

  12. anonymous permalink

    We can only wait till October 2014 lets hope the DUTY OF CANDOUR starts to take effect.

    Oh, and criminalising bad bad very bad behaviour…..Accountability…..That should give good decent Lawyers lots of work to do.

  13. Some very interesting comments. The truth is a little tricky however. I commenced nurse “training” as an 18 year old in a “mental handicap” “hospital” in 1975 (Leybourne Grange, Kent). At the time I was a long haired hippy studying A level sociology at a nearby evening institute and discovering Kafka, Berne et al for the first time. I was a natural rebel (and still am). I was at once both appalled whilst at the same time surprisingly impressed by many of the elements which together formed the ethos of the organisation. I immediately focused upon the negative elements of course..pockets of unkindness, occassionally abuse..threatening to punch some bastards lights out if they layed another hand on a hapless resident..poor living conditions..an often uninspiring day program etc. BUT there were some very positive elements also..many VERY kind carers, optimistic students and even managers!..figures who without a model tended towards simple familial kindness and were very protective of (I’m reluctant to use the term “service users”)..rather restricted dwellers. Efforts towards independence ..surprising to some, there were some absolutely excellent practices around efforts towards independence.. eg feeding for multiply disabled residents (or “Cot and Chair” residents as they were called) with very competent prompting and fading techniques with warm encouragement and praise (later to be known as applied positive practice), overseen directly by hawk-eyed “ward sisters” observing directly the practice of all carers from the dining room door..and tearing over to the student to reinforce effective practice (rather than sitting in an office creating inspector-impressing risk assessments and care plan audits). Pleasures were simple..snake trails of wheelchairs being pushed up to the apple orchards by optimistic carers and students gassing to residents and each other..picking up apples then off to the “riding-for-the-disabled” stables to feed the horses over the fence..then back via the tea bar and a 2p cuppa whist sitting in the sunshine chatting to anyone and everyone who passed with everyone of course knowing each other..even “naughty Freddie” (who used to stop traffic leaving the grounds..threatening to kick the drivers car unless they hand over 10p!) ..Freddie was always a favourite..the resident who was afraid of no one but would desist if faced with someone who he knew was kindly.. we used to talk of hopeful closure one day that was to realise soon in the development of the community care initiative. Recently however I have worked in forensic services that have shown more unkindness and cultural negativity to anything seen back then with institutional practices backed up with interminable risk assessments and jargon.. “confidentiality” being used by regulators to prevent the identification of abuse victims.. downs man consigned to a sex offenders service for buying his male friend a valentines card (I kid you not)..ridiculous medication prescribing with teams believing themselves to be in the forefront of modern care practices. So where are we left? Quite honestly I dont know. I think that the problems of the learning disabled are ultimately the problems faced by humanity.. people who are self-interested whose personal honesty and potential has failed to develop to the same extent as Freddie’s.. such dilemmas always seem to come back to the message in the story of the “Five-foot Chopsticks”. Love and Peace.

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