There are two ways of reading the recent history of learning disabilities services in the UK. The first is to follow the paper trail of legislation, White Papers, government initiatives and the like back to the 1971 White Paper, Better Services for the Mentally Handicapped, which advocated care in the community.
Another is to trace the impact of the ideas, visions and actions of innovators, campaigners and pioneers, generally working in service provision and academia.
The first is relatively easy, and yields a linear view of successive, apparently related events.
The second is harder, and throws up something more like a hugely complex Venn diagram. Yet if you compare each version of history with the actual improvements in the day-to-day, year-to-year experience of people with learning disabilities, their families and their supporters, it is the second that rings true.
I first noticed this nearly 30 years ago, when I wrote a paper later published as my first book chapteri. It seemed to me then that official social policy – the White Papers, the legislation etc – had generally failed to bring about improvements in the lives of people with learning disabilities. On the other hand, what I termed ‘unofficial’ social policy – the Venn diagram of ideas, visions and actions generated by pioneers, thinkers and activists – had been the true engine of change. Furthermore, when official social policy was at its best, it tended to simply pick up and formalise what had already been happening unofficially anyway.
The collective creation of the "Five Accomplishments"
A year after the 1971 White Paper, Wolf Wolfensberger's The Principal of Normalisation in Human Services was published in Toronto. This was followed by several publications promoting the Five Accomplishments (“relationships, dignity, choice, real contribution, and inclusion in community life”)ii. Though these are credited to John O’Brien, when I contacted O’Brien himself about this article he said: “The statement of Accomplishments itself is a collective creation. Calling these ideas my possession narrows credit and responsibility far too much. I have tinkered most with refining the written expression, but what is written results from listening to many groups who seek expression of the highest purpose the work of assisting people with disabilities can serve.”
The collaborative nature of the inspiration behind the Five Accomplishments is a key feature of unofficial social policy, which I will return to later. For now, suffice to say that if you were involved in learning disabilities services in that period, Wolfensberger’s and O’Brien’s publications were the wellsprings of inspiration to which you returned – not the White Paper.
In the United Kingdom the leading example of this ideas-into-practice process during this period was the 'Ordinary Life' initiative. Backed by the resources and reputation of the King’s Fund, David Towell and his colleagues brought together people keen to offer a new vision of the opportunities and support that should be available to people with learning disabilities. This was captured in the recognition of people’s right to live 'ordinary lives' like their fellow citizens. This, Towell says now, was “more than a slogan.”
Starting in 1979 with a short, practical pamphlet focused on housing and support, the King's Fund issued a series of publications on this theme which helped shape the institutional closure programme and much else besides over the following 20 yearsiii.
Towell says: “This work was important, not just because of the clarity of the slogan and the practical design guidance, but because the King's Fund was able to provide an independent venue where people and families, professionals and policy-makers could come together to refine these ideas together and support each other in local implementation.” Again, note the collaborative nature of the work.
Change in the face of inertia
The creation of Choice Support is another example of unofficial social policy forcing progress and change in the face of inert official social policy. In 1984 a small group of activists held a conference in South London and decided to do something to support the closure of Kent’s Darenth Park Hospital, the first large long-stay institution in England to close. The result was the formation of Southwark Consortium, later to become Choice Support.
Nan Carle Beauregard was one of Choice Support's founders, and later worked for the King’s Fund and the US Department of Health and Human Services. Now a patron of Choice Support, she reflects: “In the 1980s, as Darenth Park Hospital was closing, people living there were being sent to live in smaller hospitals, campus facilities and large group homes. It was far from personal - and no personal engagement required. In Southwark we were a group of family members, professionals and allies who were passionate about crafting better lives for the people leaving the institution and for the generations yet to come."
"We wanted individuals with learning disabilities to live next door, to shop in our neighbourhood centres, and be part of our everyday. We wanted to build stronger communities able to include all of us regardless of type or severity of disabling conditions. We spent time with each person and envisioned a life of opportunity and inclusion. We sat in pubs talking with local people about those moving back and opportunities for engagement. Southwark Consortium - now Choice Support - was the vehicle that harnessed our energies and combined the resources to make change happen."
O’Brien comments that “those who founded Southwark Consortium and their allies were active participants in [the] reflections” that helped develop and promote the Five Accomplishments. The Venn diagram image with which I started this article is apposite. Everywhere you look in this story of the recent history of UK learning disability services you see overlapping circles connecting people, ideas, actions, publications and organisations.
Since 1993 when my book chapter was published, the same dynamic has repeated itself many times: official social policy launched amid fanfares but with negligible outcomes, while real change and improvement is driven unofficially.
Services auctions and scandals
At the time, the second part of the 1990 NHS and Community Care Act was being implemented. It introduced care management, a commissioner/provider split and competitive tendering. This attempt to harness market forces to drive up quality in social care has instead led to people’s services being auctioned off to the lowest bidder, with inevitable consequences: declining standards, loss of opportunity and poor practice.
In 2001 the White Paper Valuing People was published. It was greeted with enthusiasm by most stakeholders, but this may have been simply because there had not been a learning disability White Paper since 1971, rather than because the new one actually proposed anything new. While there was nothing wrong with Valuing People, it did little more than legitimise and validate the best practice of the previous decade, almost all of which was generated unofficially by thinkers, activists and innovators. In Towell’s words, it was “essentially a codification of these ideas in government speak.” And as in the case of the previous 1971 White Paper, the government set out targets for hospital closure without providing a strategy for achieving them. History repeated itself when hospital closure targets were not met.
The most disturbing recent example of official social policy failure and history repeating itself took place in 2011. Since the 1960s there have been abuse scandals in learning disability institutions that official policy seemed unable to stop. By just over a decade into the 21st Century there had been three major national abuse scandals, the most recent at Winterbourne View, a private hospital near Bristol, owned and operated by a company called Castlebeck. A Panorama investigation broadcast in May 2011 exposed physical and psychological abuse suffered by people with learning disabilities at the hospital. In the aftermath the government realised that although the last NHS learning disability institution in England had closed in 2010, there remained around 3000 people with learning disabilities in NHS Assessment and Treatment Units (ATUs) or private hospitals like Winterbourne View.
A flurry of official social policy followed, which has as yet produced no tangible outcomes – the DH Winterbourne View Review Concordat: Programme of Action (2012), Winterbourne View – Time for Change (2014) and Transforming Care for People with Learning Disabilities – Next Steps (2015). There are still 3000 people with learning disabilities in ATUs and private hospitals.
All of this begs the question, why is it that unofficial social policy leads to change, while most official efforts prove impotent?
O’Brien says: “‘Unofficial’ social policy – like the Five Accomplishments – draws its power from networks of people: people with disabilities, their families and allies who do the work of social change. Direction, in the form of questions worthy of collective struggle rather than commands or prescriptions, emerges from reflection on experience of what hinders and what helps people live lives in community that they have good reasons to value. Disconnected from collaborative efforts to find new opportunities for people with disabilities, Accomplishments shrivel into slogans.”
It’s the very fact that unofficial social policy is born out of lived experience and a network of relationships that gives it its power. Carle Beauregard adds: "Governments can craft the framework - or the battlefield - for change. But real and sustained change happens when people's hearts and minds are engaged in action.”
The State we're in
So where are we now? With the exception of the failing Transforming Care programme there is very little active official social policy relating directly to people with learning disabilities. However, if you look at the unofficial reaction to the very circumstances that prompted the ill-starred Transforming Care programme, the Winterbourne scandal, then you see the seeds of change being sown. Once again it is the activists, the thinkers, the radicals – people prepared to question the status quo – showing a way forward.
At Choice Support we work with people with extremely complex support needs, many of whom have not been reached by the Transforming Care Programme. Take AJ, for example. When we first met her she was well known to commissioners – partly because of the challenges she posed, but also because her family had considerable support needs of their own.
When AJ was a child they had asked for help and then rejected all offers of support, but once she reached adulthood her family could not manage. A series of failed support attempts ensued including outreach, supported living and periods in a local ATU. After another attempt at living at home AJ was admitted to an Autism specialist hospital far from her family, spending 6 years there, punctuated with a break back at the local ATU. For most of this time she was sectioned. At this point AJ was one of the 3000 people marooned in the system, seemingly beyond the reach of official social policy.
When Choice Support was approached by an advocate to support AJ to move out of the hospital, both family and commissioners needed to feel confident with us, and we went through several interviews before starting work. Once chosen as preferred provider we appointed a senior manager with over thirty years’ experience to help AJ. He embarked on a complex process often involving meetings with 17 other professionals and AJ’s family.
Getting to the point of discharge was not easy. All of the major steps in the process, including recruiting a staff team and locating a home, were fraught with disagreements. The hospital didn't believe that AJ could be supported in the community near her family. This tension was compounded by the family’s suspicion of authorities, their struggles with making decisions, and a high turnover of staff at the local authority. Eventually one social worker engaged with the planned move and stuck with it, allowing us to form a productive working relationship with the local authority.
AJ is now supported 2:1 in her own home, just around the corner from her family. She makes regular planned visits to them, allowing us to ensure appropriate support is in place, and enjoys facilities in her community which she knows well. There is still a long way to go, but the foundations for a decent life outside of the hospital/ATU system have been set.
Once again the key to this success, as with all unofficial social policy, is collaboration: working in a relational way with the person supported, their family, and others, and not assuming that as professionals we are always right.
Other providers have similar stories to tell of working in partnership with people they support and their families to craft unique, truly personalised services that produce life-changing results. Meanwhile, across the country grassroots initiatives and organisations are not just demanding change, but showing how it can be achieved. Learning Disabilities England is an example. A membership organisation for people with learning disabilities, families and friends, providers, commissioners, self–advocacy and carer groups, and development and training organisations, it encapsulates the collective, collaborative spirit at the heart of all successful unofficial social policy.
The ATU impasse revealed by Winterbourne isn’t the only area of learning disability provision that requires profound change. Shrinking social care budgets and a growing user dissatisfaction with one-size-fits-all models of support like residential care are pushing providers to re-think what they do, and how. The case for reform is compelling, but where will the energy and ideas come from? Not, I suggest, through official social policy. Rather, it will come through passionate, committed and creative leaders, willing to test boundaries and ask difficult questions.
From the mid-1970s through the 1980s there was fervour, a sense of urgency. Hospitals started to close and community-based services developed. A reforming zeal spread through the grass roots. Supporting people with learning disabilities was more than a job, it was a just cause. We need to rediscover that zeal, and find leaders to create new unofficial social policy to inspire this generation, just as Towell, Wolfensberger and O’Brien inspired a generation 30 years ago.
Thanks to John O’Brien, David Towell and Nan Carle Beauregard for sharing their thoughts for this article.
i Steven Rose (1993). Social Policy: A perspective on Service Developments and Inter-Agency working. In Brigdon, P., & Todd, M. (eds): Concepts in Community Care for People with a Learning Difficulty. Macmillan Publishing, Basingstoke.
ii Most recently John O’Brien and Carol Blessing (2011). Conversations on Citizenship and Person-Centered Work. Pp. 124-126, inclusion.com
iii David Towell (ed.) An Ordinary Life in Practice. King's Fund, London, 1988.
iv There Is An Alternative. Association for Supported Living, 2011.