Doing is believing

Excellent piece in this morning’s Guardian newspaper by new organisation ‘The Doers Club’ – a group of disabled people whose lives have been transformed by self directed support and personal budgets and who wish to extend their good fortunes to others – responding to the recent critical research and article in the same newspaper..

The group has also emulated the recent action of a group of academics, which includes Peter Beresford, by writing to all Directors of Social Services in England to ask them to make good their commitment to personalisation and remove the barriers that stand in the way of effective implementation.

I hope we will hear more from the Doers Club here and elsewhere in due course.

In the meantime, this excellent piece by Jenny Morris also responds to the critical research and provides a welcome history and refocusing on the real obstacles standing in the way of self-determination for people receiving public service support.

 

 

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Independent living – a charismatic, chameleonic or institutional idea?

By Chris Hatton

I’ve been reading an extraordinarily interesting book recently by Katherine Smith*. The central strand of the book is to explore, through detailed case studies, why and how some areas of public health evidence (notably tobacco control) have ‘successfully’ made their way into government legislation and public health policy, whereas other areas with equally compelling public health evidence (notably the social determinants of health inequalities) have not translated into legislation and public policy.

I can’t do justice to the subtleties of her argument here, but my simple misrepresentation of it is that evidence is only one component in the service of an ‘idea’. For this idea to translate into any form of public policy requires a whole series of conditions to be in place. Katherine Smith argues that for public health these conditions include:

  • The idea having to be consistent with (and/or presented in ways that make them seem to be consistent with) larger institutional ideas (or meta-narratives) held across governments such as a medical model of health rather than a social model of health or that promoting economic growth as the primary objective of government.
  • Having broad coalitions (e.g. lobbying and pressure groups, NGOs, policymakers, journalists, academics) with an agreed idea and central programme.
  • Being able to articulate a positive policy alternative as a result of the idea, rather than simply using the idea to critique existing arrangements.
  • Having an already existing institutional structure within government and other agencies within which the idea can be readily embedded.

Katherine Smith presents a detailed case study concerning tobacco control, arguing that the evidence was used to support an effective, broad-based coalition with an agreed idea (to reduce smoking through targeted tobacco control measures) and a willingness to engage in argument with opponents of tobacco control. This had positive proposals, underpinned by arguments that tobacco control would yield economic benefits (for example in the reduction of healthcare costs associated with passive smoking). ‘Downstream’ tobacco control measures such as smoking cessation could be readily placed within a medical model and within existing institutional structures (as a part of the NHS), and even smoking bans in public places did not require a social model of health (which would require ‘upstream’ approaches to reducing social inequalities in taking up smoking in the first place). In Katherine Smith’s terms, tobacco control’s (partial)’success’ was partly due to its being able to flex itself from a critical idea to an institutionally acceptable idea.

In contrast, health inequalities evidence and ideas have generally fared less well in terms of translation into legislation and government policy. This is partly because they are insistent on a social model of health and they cut across all aspects of government departments and policy/service delivery structures. Health inequalities proponents have also not managed to form broad-based coalitions with an agreed programme of positive alternatives, instead offering a series of fragmented critiques of current arrangements. Only those elements of these ideas that can be transmuted through institutional filters make it through to policy in any form (for example psychological therapies for people with mental health problems, framed in terms of improving economic productivity and focused on ‘downstream’ delivery through health services rather than working on the ‘upstream’ conditions that increase the chances of mental health problems in the first place). In Katherine Smith’s terms, these ideas that challenge existing arrangements without offering positive alternatives are critical ideas.

There are also some ideas that are so flexible that they can be made to fit almost any set of government priorities – Katherine Smith calls these chameleonic ideas.

Finally, there is a recognition that very, very occasionally, charismatic ideas are possible. These are ideas that overturn or fundamentally change the institutional ideas or meta-narratives so completely that they replace them with the new set of charismatic ideas that themselves then become institutional.

When I was reading this book, I was struck by how useful this framework might be for understanding the strategic and tactical dilemmas of the independent living movement in translating the independent living idea into meaningful changes in legislation, policy and practice.

First, it suggests that if the independent living idea is to remain solely critical of existing arrangements without offering a positive alternative, it is unlikely to gain any traction on legislation, policy and practice.

Second, it presents a dilemma about whether the independent living movement intends to hold out as a charismatic idea, with long odds against success but with the prize being to overturn institutional meta-narratives and institutional structures to create a new sense of ‘this is just the way things are’. Alternatively, can the independent living movement retain its integrity and reach its goals if it is ‘flexed’ to try and accommodate to institutional ideas and structures (and if so, which elements can be flexed, and how far)?

Third, whatever the agreed solution to the dilemma presented above, there needs to be a broad-based coalition with agreed objectives and articulation of a positive alternative policy vision, and clear arguments to mobilise against critics of independent living.

Under the previous government, it could be argued that a lot of the conditions for successful translation of independent living ideas into legislation, policy and practice were in place (e.g. the Equality Act, the DRC, ODI, Equality 2025, supporting for user led organisations). The current government is clearly a much more difficult environment, not only economically but in the dismantling of the elements of a broad-based independent living coalition with any presence inside government. This suggests that there are tactical decisions to be made about who to engage with in (re)building such a broad-based coalition.

I wouldn’t presume to have any answers to these dilemmas, but I think the ideas set out in Katherine Smith’s book help us to think through the strategy and ultimate goals to make independent living a reality.

*Katherine Smith (2013). Beyond evidence-based policy in public health: The interplay of ideas Palgrave Macmillan: Basingstoke.

About the author

Chris Hatton is an academic at the Centre for Disability Research, Lancaster University, UK, and also currently a Co-Director of Improving Health and Lives, the Learning Disabilities Public Health Observatory, part of Public Health England. His research work over the past 25 years has mainly focused on people with intellectual/learning disabilities, particularly around documenting the inequalities experienced by people with intellectual disabilities and their families and evaluating policies and practices designed to reduce these inequalities. He blogs here in a personal capacity. You can follow Chris on Twitter: @CHRISHATTONCEDR

 

End of the road for Britain’s mental capacity laws?

(Updated upon publication of the General Comment 11th April 2014)

It seems likely, given the lack of engagement from UK-based NGO’s and disabled people’s organisations, that a development eagerly awaited by disability activists around the world has gone largely unnoticed here in the UK.   Yesterday the United Nations Committee on the Rights of Persons with Disabilities agreed a ‘general comment’  regarding Article 12 of the UN Convention on the Rights of Persons with Disabilities, which concerns equal recognition before the law.  A general comment is an interpretative text explaining in some detail how an Article in a Treaty should be properly understood, and is relied upon by the Committee in appraising the performance of States in implementing the Convention as well as others such as Courts when drawing on the UNCRPD in particular cases.

In summary the Committee has said that:

‘Historically, persons with disabilities have been denied their right to legal capacity in many areas in a discriminatory manner under substitute decision-making regimes such as guardianship, conservatorship and mental health laws that permit forced treatment. These practices must be abolished in order to ensure that full legal capacity is restored to persons with disabilities on an equal basis with others’

Further it has also confirmed that States ‘ that may be must provide persons with disabilities access to the support necessary to enable them to make decisions that have legal effect’ and that ‘support in the exercise of legal capacity must respect the rights, will and preferences of persons with disabilities and should never amount to substitute decision-making.’

What are the implications for the UK’s laws regarding legal capacity? Well, in a nutshell the laws in England and Wales and in Scotland are now technically non-compliant with Article 12 of the Convention, as they both provide that legal capacity can be denied on grounds of mental capacity and include models of substitute decision making. Coming off the back of the recent damning report of the House of Lords Committee on Deprivation of Liberty Safeguards and the Supreme Court Judgement in Surrey County Council v P and Others (see ‘A gilded cage is still a cage‘) the General Comment of the UNCRPD Committee only adds to the building pressure to reform the UK’s laws regarding legal/mental capacity, something I hope we might see included in the political Party manifesto’s ahead of the next election (and separately to be taken forward by the Scottish Government).

But of course this is not simply a question of law reform.  The Convention demands an expansive approach to nurturing the will and preferences of people requiring support with decision making in all spheres of life, with the general comment noting that:

‘Article 12, paragraph 3, does not specify what form the support should take. “Support” is a broad term that encompasses both informal and formal support arrangements, of varying types and intensity. For example, persons with disabilities may choose one or more trusted support persons to assist them in exercising their legal capacity for certain types of decisions, or may call on other forms of support, such as peer support, advocacy (including self-advocacy support), or assistance with communication. Support to persons with disabilities in the exercise of their legal capacity might include measures relating to universal design and accessibility, — for example a measure requiring private and public actors such as banks and financial institutions to provide understandable information —, in order to enable persons with disabilities to perform the legal acts required to open a bank account, conclude contracts or conduct other social transactions. (Support can also constitute the development and recognition of diverse, non-conventional methods of communication, especially for those who use non-verbal forms of communication to express their will and preferences.)’

Thus a clear link is made between Article 12 and all other articles in the Convention – whether access to justice, the right to political participation, access to goods and services, the right to work, the right to freedom of expression, opinion and access to information or the right to choose where and with who to live.  Without the right to equal recognition before the law and the support to make decisions these other rights are rendered meaningless.  Conversely, these other rights are the vehicles through which the will and preferences of disabled people find expression, and hence equal recognition before the law only has meaning if people have the opportunity to vote, choose where and with who to live, to be supported to express themselves and to be fully included in every area of life. This is also why, although people may point to weaknesses in approaches such as personal budgets or ‘self-directed support’, the clock cannot be turned back regarding the rights of people to be supported to be the authors of their own lives – any shortcomings in current approaches must invite only the quest for better solutions.

Moreover, much evidence now indicates strongly that our capacity to make decisions and direct our own lives depends heavily upon the size and quality of our social networks.  The more socially isolated we are, the weaker our ability to successfully navigate life.  This completely challenges the idea of autonomy residing in the ‘atomised self’ (every man is an island) and suggests instead that we need to understand better at the level of principle and practice notions of shared personhood and relational autonomy (autonomy that derives from ‘being in the world’).  In this sense inclusion in family, community and associational life is a precursor to being able to exercise choice and control, not simply an outcome.  Supported decision making is then in large part the business of building networks and community and of supporting people to live, learn, work and enjoy their spare time alongside their non disabled peers.

The position of the Committee is challenging and remains controversial.  Implementing these ideas is not at all straightforward and there is much thinking still to be done.  But it is clear that our current law and approach is seriously wanting, and no longer compliant with international law.  We need to reopen this debate.