Community Care & Inclusion for People with an Intellectual Disability

Editors: Robin Jackson and Maria Lyons

Reviewed by: Simon Duffy

This is an excellent collection of essays, well edited and generally well written, with an important purpose: to offer a critical perspective on the typical pattern of supports for people within intellectual disabilities, which commonly goes under the name of ‘community care’. 

There are 15 essays altogether, covering different questions and different international experiences, but they are particularly focused on looking at ‘community care’ or what is also referred to as “dispersed housing schemes” from the perspective of those concerned with a community-focused approach to support.

I cannot do justice to all of the arguments and descriptions in this book, but I particularly appreciated the fact that the essays offered perspectives from all around the world - from Australia to Vermont, from Scotland to Bhutan and from New Zealand to China. However the dominant perspective is that the ’community care’ policy, which followed the closure of the long-stay institutions, has either failed or is at least severely lacking. More positively the book offers a series of interconnected ideas about what might help people with intellectual disabilities (and the rest of us) achieve a better version of community life - what Michael Kendrick calls a “Virtuous Community.”

Several authors propose that one dimension of this virtuous community can be found in Camphill communities - self-governing villages where people with and without disabilities live together, working, farming, baking and playing in a community that has a spiritual and ecological harmony. This is certainly an attractive image, if a hard one for urbanites like myself to fully grasp. Robin Jackson bitterly notes that research, funded by the UK Government, went out of its way to ignore its own very positive findings about the effectiveness of these communities (Emerson et al 1999). And I must say that he is right; for as an early advocate of individualised approaches to support I was also frustrated by the exclusion of our alternative approach from this same research project. I also remember how the positive findings about village communities were quietly ignored by academics and policy-makers.

A second dimension is set out in an excellent essay by Maria Lyons, which explores our distorted and degraded conception of work. She demonstrates that the current fixation on paid employment, as the pathway to social value, community life and meaning, is highly dangerous. While it may make sense for those in thrall to big business to put so much stress on the merit of paid employment the rest of us should operate with a much wider sense of what is valuable in life. (Nobody is paying me to write this review, I do it because I believe it is important.) However it was also good to see this essay paired with Bryan Dague’s essay which sets out clearly how excellent practice in supported employment can help people get the best from paid work or self-employment. It is striking to compare the careful development of policy in a small state like Vermont with the bloated and wasteful Work Programme run by Whitehall.

The third dimension is captured in a very interesting essay on the idea of Gross National Happiness by Ha Vinh Tho. This is an attempt, started in the Kingdom of Bhutan, to reframe the overall purpose of government, to challenge the destructive goal of GDP growth and to instead develop a coherent understanding of what leads to happiness, sustainability and justice. This essay demonstrates that the values expressed in small Camphill communities do resonate with much broader issues around the world.

There is a value in looking at the issues for people with intellectual disabilities from the particular perspective of intentional community. This book is a welcome antidote to the mainstream policy literature, which often relies on simply ideological formulae rather than really trying to understand what works well for people. However I think there is a price paid for only offering this one perspective.

Although Paul Milner and Brigit Mirfin-Veitch rightly stress the importance of the person’s voice, the person’s story, the book was very light on this. My friends with intellectual disabilities would have had something valuable to say on living life in the dysfunctional communities that most of us choose to live in. I would also have been interested to hear the reflections of people with disabilities living in Camphill communities. But I did not hear those voices and I did not hear the voices of their families. Simon Jarrett described in his excellent review of the history of people with intellectual disabilities how people have been progressively ‘captured’ by professional groups who then pretend to speak for them. But we have now seen more than 20 years of self-advocacy by people with intellectual disabilities and this needs to be respected.

I also think it is a mistake, and an undue simplification, to see the world of ‘community care’ as one unchanging system. Many of us have been engaged in decades of creative engagement with that system precisely to challenge its tendency to uniformity, control and institutionalisation. There have been great successes in enabling people to have lives of meaning and citizenship. This is even touched upon in the essay by Robert Cummins, who describes the evolution of the Australian National Disability Insurance Scheme (NDIS), a system to enable people and families to control their own support. But there is no explicit connection between this important policy shift and the question of how we can nurture better and more inclusive communities. This is not to say that these efforts at self-determination or community-building have all been successful, but as many of these changes were inspired by a similar vision of life as the one that inspires the Camphill movement then I think these changes are worthy of some comment.

However these are minor quibbles, they do not take away from the strength of the book, they just reflect its limits and perhaps my own sense of the conversation that I’d like to see flow from reading these essays.

There is however one essay that took me by surprise and which actually rather frightened me. Robin Dunbar is Professor of Evolutionary Psychology at the University of Oxford, and it strikes me that if the eugenicists created the deathly institution then it might be the evolutionary psychologists who will bring it back. The basic premise of his argument is that most human beings can only have a limited number of real human relationships (about 150) and that people with intellectual disabilities can only cope with an even smaller number (perhaps 40). From this assumption he reaches the rather startling conclusion that people with intellectual disabilities are living in groups that are too small and that “a community of around to 30 to 50 individuals would probably be nearer the mark”. On the same logic I should not be living with my wife and son, instead I should be living in a community of about 150 people with PhDs. What a lot of nonsense. I’m afraid the professor has made the rather common mistake of forgetting that people with intellectual disabilities are human beings with rights, relationships and interests - just like everyone else. They don’t need him, or anyone else, to start planning their confinement.

Apart from this one essay, Community Care and Inclusion is an excellent book, one which I would recommend to anyone interested in advancing the rights of people with intellectual disabilities or in creating more virtuous communities. The book reminds us that modern society does not serve any of us very well and that welcoming people with intellectual disabilities into the heart of our communities is critical to transforming them into the kinds of places that can nurture all of us.

Reference:

Emerson E, Robertson J, Gregory N, Hatton C, Kessissoglou S, Hallam A, Knapp M, Järbrink K, Netten A, Walsh PN, Linehan C, Hillery J & Durkan J (1999) Quality and costs of residential supports for people with learning disabilities: a comparative analysis of quality and costs in village communities, residential campuses and dispersed housing schemes. Manchester, Hester Adrian Research Centre, University of Manchester.

The publisher is Floris Books.

Community Care and Inclusion for People with an Intellectual Disability © Floris Books 2016.

Review: Community Care and Inclusion for People with an Intellectual Disability © Simon Duffy 2016.

All rights reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.