What do rights and choice in social care mean for people with learning disabilities?

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Here we are then with my first blog for the Social Care Elf. After looking on from the side for some time at the elves, it is a delight to be here in the woods with them and to have my first assignment.

And what a fantastically thought provoking and interesting paper they have found for me to review. It is by Rachel Fyson and John Cromby and concerns what is meant by human rights in the context of services for people with learning disabilities (or as they say ‘intellectual disabilities’) operating in a broader social care environment advocating choice for service users.

Sitting in the woods with the elves discussing research, key concepts and implications for practice gives some much needed time for reflection on important matters that might otherwise be taken for granted in the rush of everyday life and work. It is too easy to feel yourself to be proceeding on the basis of someone’s taken-for-granted assumptions and one-dimensional policy priorities and then stumbling through the realities and subtleties of people’s lives.

It's important to take time to reflect on relevant research from time to time.

It’s important to take time to reflect on research and for social care conceptual and critical pieces are also of relevance.

Main ideas and arguments

Fyson & Cromby give some much-needed space for thought and reflection in their discussion of where the social care policy choice agenda meets the realities of the lives of some people with learning disabilities.

They begin by noting that some constructions of human rights, including that in the United Nations’ Universal Declaration of Human Rights, explicitly link having rights to the ability of humans to reason. They identify a possible disconnect here between this conception of rights and the world of people with learning disabilities, who have, to varying degrees, impaired abilities to reason.

They note that tensions flow from this for legal and welfare systems that are based on similar notions of personhood. They continue to discuss how they see theses tensions being exacerbated by the spread of neoliberalism in to welfare systems and being crudely aligned with ideas of human rights.

So, what is neoliberalism and how does it relate to choice and tensions concerning the rights of people with learning disabilities?

Neoliberalism is a term used to summarise a view of the world which asserts, broadly, that markets and free trade ought to dominate economies, that public government spending needs to be reduced as much as possible, and that individuals, particularly as entrepreneurs and consumers, ought to have a high degree of freedom to organise their own lives.

Fyson and Cromby note the connection here between markets, a moral view of individuals, freedoms, right and the ability to reason. They see that as neoliberalism influences welfare systems, then:

Policies and services for people with learning disabilities are organised in accord with an ideology that emphasises market efficiencies, individual responsibility, personal choice and self-determination, privatisation, outcome orientation and consumer responsiveness.

Rational consumer choice is being placed at the heart of welfare policy and practice, with the exercise of choice being seem as a key to achieving better outcomes. This has become something of a blanket approach to social care policy, namely a mantra of choice for all users of services being the driving ethos. Yet, the conditions for making meaningful choices can be compromised in circumstances faced by people with learning disabilities. Indeed, as the authors discuss, choice also can be problematic for people without learning disabilities.

There are tensions when neoliberal welfare systems align choice with human rights.

There are tensions when neoliberal welfare systems align choice with human rights.

Conclusions

So, what Fyson and Cromby see is an alliance (sometimes planned, sometimes unconsciously) of ideas drawing on neoliberalism and human rights that make choice and rational consumers an overbearing framework for decision making in social care. They see this as especially so in the context of rights and choice in working with people with learning disabilities.

Let us be clear, Fyson and Cromby do not claim that people with learning disabilities are in anyway less human or have fewer rights. Rather, they are concerned that unthinking coupling of neoliberal ideas of market-based choice with ideas about the human rights of people with learning disabilities leads to a narrow view of people.

They are more interested to assert the interconnected and relational basis of people’s lives as a fuller understanding of the human condition, rather than a one dimensional view of individual choice only.  They note the emphasis in choice policies on the permissive rights of people (the right to do certain things), but a relative silence about protective rights (the right to not have certain things done to you).

In their view the current dominance of the permissive rights arguments over those of the protective ones is too often having a detrimental effect on social care practice in learning disabilities services. They discuss where people with learning disabilities have been abused or murdered after becoming disconnected from services and it is in part explained away on the grounds of it being their choice to withdraw from services. A protective rights argument would, of course, have adopted a different view.

People’s lives are interconnected so a fuller understanding of the human condition, rather than a one dimensional view of individual choice only is needed.

People’s lives are interconnected so a fuller understanding of the human condition, rather than a one dimensional view of individual choice only is needed.

Summing up

So, this does all matter to every day practice and the lives of people with learning disabilities and is not just rarefied discussion about abstract concepts. Fyson and Cromby go on to discuss examples of the tensions in trying to operationalise a “rational choice” policy in working with people with learning disabilities. These include work to support a person with learning disabilities to make choices, only for the practitioner to finally intervene and decide on some approaches that were against the choices the person with learning disabilities would have made, on the grounds that the person’s preferred options were not in the best interests of his wellbeing.

Drawing on other studies of choice in practice in services for people with learning disabilities, the authors note how sometimes service commissioners and providers seem to use choice over relatively small things in a person’s life (such as what to wear) as a gloss to circumstances in which people have little to no choice over larger decisions, such as where to live.

Choice can be a wonderful thing for people. It is not, though, a panacea for improving all aspects of social care. Simplistically coupling arguments together such as ‘choice’ and ‘human rights’, especially through the lens of the neoliberal consumer and markets, can give a veneer of reason to seemingly guide practice, but the reality is much more nuanced and complex.

Fyson and Cromby have very helpfully dug beneath this veneer in the context of working with people with learning disabilities and demonstrated the need for a more critical engagement with how these ideas are articulated and then applied in policies and practice.

Links

Rachel Fyson & John Cromby (2013) Human rights and intellectual disabilities in an era of ‘choice’. Journal of Intellectual Disabilities Research 57,12: 1164-1172 [Abstract]

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