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Act against the 21st Century institutionalisation of people with learning disabilities

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Support the #7Daysofaction on twitter – Monday 18th April 2016
by Dan Goodley

In 1993 I graduated from Manchester Metropolitan University with a psychology degree. My Mum and Dad were very proud. I was … unsettled. Not simply by the prospect of post-student life but by the discipline of psychology. One of the things I learnt on graduating was this: there were a helluva lot of psychological ideas that viewed disabled people as nothing more than pathological conditions. These ideas seemed to go against my understanding of disability that I had learnt from families and friends. Disability was, if anything, a complex phenomenon where people with physical, sensory and cognitive impairments were excluded from mainstream life. I did not get these words from thin air: in 1992 I had learnt about the social model of disability. This seemed more in line with my personal experiences of disability (and, for that matter, my politics). At the heart of this model is a simple but important idea: people with impairments are excluded from mainstream society through a host of economic, social and cultural barriers. Disability was and remains a social and political concern for all of us – whether we are disabled and non-disabled – and the exclusion of disabled people is a stain on our society.

During my psychology course I did come across some thought-provoking ideas including the work of Erving Goffman. He was pitched to us as a social psychologist; someone interested in the rules and conventions of everyday life and how these shape how people do being people. But also there was his work on stigma and on institutions. If you are looking for a good disability studies angle on Goffman check out this out here:

http://dsq-sds.org/article/view/4014

Goffman said many important things. One of these stuck with me, the problem of total institutions.

total institution is a place of work and residence where a great number of similarly situated people, cut off from the wider community for a considerable time, lead an enclosed, formally administered life together.
https://www.boundless.com/sociology/textbooks/boundless-sociology-textbook/socialization-4/agents-of-socialization-46/resocialization-and-total-institutions-292-8259/

I was reading Goffman’s work in the 1990s when the Tory government was pushing for de-institutionalisation and community care. While some observers put the Tory reasoning down to reducing expenditure on institutional care there was an unholy alliance with disability activists who also called for the closing of institutions in which many disabled people, including people with learning disabilities, were housed, cut off from the wider community, leading enclosed, controlled, lacking, poor and unhealthy lives. Goffman provided theoretical language and empirical data to help articulate a politics of deinstitutionalisation. Yes, there were massive problems with community care. But, the process of deinstitutionalisation invited a consideration of how society at large responds to people with learning disabilities. Indeed, one of the knock on effects of closing down these institutions was an immediate growth in self-advocacy groups across Britain.

In 1995 I was lucky enough to become involved with the self-advocacy group Huddersfield People First. I met Elaine Hogg who was an incredibly vibrant soul. Elaine had spent over 20 years of her life in a well-known institution in Yorkshire, England. She told me about being made to wear weighted boots to stop her from running around the institution. She remembered being hit with the keys of one of the staff if she ‘misbehaved’. There were many doors to lock, many keys, and this was therefore a painful experience. On leaving the institution – as just one example of the streams of people that left these horrendous places as a consequence of deinstitutionalisation – she moved into a supported home. Shortly after ‘re-entering the community’ she joined an Avant-garde dance troupe. Her weighted boots were no longer a problem. And so, while problems persisted with community responses to people with learning disabilities (which ranged from hostility to indifference), I remember thinking that maybe Goffman’s ideas had been useful, perhaps even, trickled down into the mind-sets of policy makers and Tories. And maybe not all psychology was a pile of shite.

Fast forward to 2016. And the. #7Daysofaction on twitter – Monday 18th April 2016. The press release is reproduced below.

 https://theatuscandal.wordpress.com/press-release/
Press Release from 7 Days of Action Campaign

Monday 18th April 2016 sees the launch of the 7 Days of Action Campaign. The campaign is launched by the mothers and family members of people with learning disabilities who are currently trapped in Assessment & Treatment Units. These people have committed no crime. They have rarely been diagnosed with a mental health condition. Yet, they remain in Units for years at a time.

There are currently 3000 people in ATUs. 43% of the people are in Units more than 50K from their homes.
72% are being prescribed anti-psychotic medication as a means of containing them.
30% of people have been in ATUs for more than 5 years.
The average cost of being kept in an ATU is £3500 per week.

All these people want is to be living back home with their families or living in their own homes with support. And that is the aim of this campaign. To shine a light on the lives lived in ATUs but ultimately, to get people back to their own homes. On Monday 18th April we will be launching a blog that each day for the 7 Days of action will tell a different story of someone who has experienced life in an Assessment and Treatment Unit. You can find the blog here: https://theatuscandal.wordpress.com/

+++++ End of press release ++++++

Has nothing changed? How can there still be so many people in these places? Did I dream what happened in the 1990s? It would seem that Goffman’s work is more important than ever. But, of course, social psychological ideas are only one element of how we articulate our passionate rejection of the institutionalisation, segregation, drugging and pathologisation of people with learning disabilities. We need to ask some serious questions.

  • In times of austerity how can we come together to support one another to ensure that people with learning disabilities are not marginalised, excluded and cast off to the edges of our communities?
  • How can we galvanise the #7Daysofaction campaign to connect with our comrades with and without learning disabilities to challenge the dehumanisation of people so-labelled?
  • How do we keep the pressure on key players including government, to service providers and commissioners of services?
  • How is it that we continue to incarcerate people with learning disabilities and WTF does that say about our society?
  • How many more campaigns like @JusticeforLB @Justicefornico have to be launched before society starts viewing people with learning disabilities as fully human?
  • And how much more pain and anguish do people with learning disabilities and their families have to endure?
  • Just as many self-advocacy groups are folding in these austere times how can we support self-advocacy in the lives of people with learning disabilities?

I think Goffman would be fully behind #7Daysofaction on twitter, Monday 18th April 2016. I hope you are too.

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2 thoughts on “Act against the 21st Century institutionalisation of people with learning disabilities

  1. Did you dream what happened in the 1990s? No but it was a brief moment.

    The period that needs to be considered is the following decade and New Labour’s prime-pumping of the NHS budget. What I’m going to say next is distasteful but nevertheless a hypothesis that needs exploring.

    One of the consequences of pushing such a step change of funding into the NHS was that it created opportunities for expanding clinical services. One such area for growth was ATUs which can be seen in the expansion of private providers such as St Andrews.

    So when money came into the NHS, instead of supporting the process of continuing and supporting community care, commissioners and practitioners chose to expand clinical services.

    Then austerity hit and a few chickens came home to roost. Private contracts being more protected meant squeezing public clinical services. Just look at Ridgeway which Southern Health took over. That was an underfunded and struggling facility that Southern Health made further cost savings on when they took control leading to the death of Connor Sparrowhawk.

    And now we’re back to the 90s where cost savings are driving new unholy alliances between different groups to push people out of clinical settings and into the community (see Simon Stevens testimony to the Public Accounts Committee where he was viewing an 80% saving in costs to the NHS).

    One obvious challenge that this campaign can do is challenge the NHS on what short-term actually means here. That the average stay in an ATU is five and a half years and costs £1m per stay defeats the notion of ATUs being short-term intervention. For illustration, if new placements were only funded for 6 months then on the existing funding profile, it would see cost savings of circ £900k. So using Stevens 80% savings formula, that would allow a further £100k or so to help embed the person into the community.

    In reality, the NHS needs to invest more in place-based care to facilitate this process but that is in the NHS 5 year forward view written by Simon Stevens. Both the words and the financial pressure exist currently to help support the aims of #7daysofaction. Sadly the NHS is a nebulous structure these days and there are substantial barriers to change. But austerity can be worked to support the aims of the campaign.

  2. Worse -I came to Preston in 1983 to resettle people from long-stay hospitals in the North-West into ordinary housing on Preston and was impressed by the strategic approach of the N/West regional Health authority who had supported this project by an untried charity Integrate, newly formed with its expressed purpose to get people back to their communities after years of incarceration. Naively across the next decade or two we celebrated the closures of the institutions and indeed for many years the policy was strong – no funding unless community-based services in ordinary housing. The NWRHA would only agree funding for community resettlement IF people were being resettled into ordinary housing – NO RESIDENTIAL CARE was funded. People had tenancies and secure tenure at that. The other parts of the health strategy were cascading key training to community staff and the formation of local district joint training teams with key practitioners delivering training – in those days included a 3 day induction training which included a large focus on values and normalisation workshops and John O’ Brien’s 5 Accomplishments, Personal and sexual Relationships training, communication, IPP – personal planning, goal planning, training in systematic instruction, insights into challenges…. and interestingly included social workers, nurses and community support staff training together. Also developed and funded was a large skilled community team with social work psychology speech therapy OT and nurse, as well as the specific injection of funding for a team to work with challenges in the community and included both caseworkers (from psychology, social work or nurse backgrounds) and hands-on workers to move in in crisis. We also developed a joint services’ PBM approach with physical intervention franchised with PRT delivered only around individual’s assessed needs but with initially a focus on preventive training for all. The community team also had a team who worked with children – hence enabling early intervention and good transition. With the NHS reorganisations across the years this community service which intervened and supported people to remain in the community (and was very successful in so doing) has been completely decimated and as far as I can see all that remains now is perhaps 3 nurses whose time as one can imagine is largely diverted to supporting physical health support and the waiting list for agencies needing support is so long that inevitably breakdown occurs before they can respond. So some like me felt totally naive when we discovered that behind our backs had developed a flourishing ‘business’ of ATUs as far as I can see totally motivated to show how people need them AND there’s been no local accountability in Partnership Boards who should have been reporting and tracking such placements as a failure of policy and should have been identifying and rectifying the service deficiencies. We didn’t need ATUs when we had a proper integrated community service but it would seem we are now spending that money on totally inappropriate services outside the community instead of building on what worked. We don’t seem to learn – each new structure decides to do something different else and learning disability is dwarfed in health by other larger political voices. No evidence base it seems to me just power bases which seem to have been dictating practice – even in the face of evidence as we do have people with similar issues who successfully live in the community and indeed whose lives improve and difficulties reduce. With all the wasted time and effort, reports and meetings, has anyone stopped to think we might learn better from what has worked than think we have to reinvent yet once again? And where is the will to right this appalling wrong?

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