Simon Duffy explores how the principles of supported living have been corrupted and how we need to move to a focus on rights.
Author: Simon Duffy
This article was first published in Care Management Matters, our thanks to them for permission to republish here.
Terms like 'supported living' once played a useful role in challenging segregation and powerlessness. But today the terms have been corrupted to such an extent that they have lost any useful meaning. Here Simon explores what has happened and what we might do about it.
Over 20 years ago Peter Kinsella returned from a year in America as a Harkness Fellow and he then pulled together the Supported Living Programme. I was very honoured to be asked to join Peter’s small team that worked to help service providers find an alternatives to group homes.
Peter’s work was critically important in the development of policy in the UK. By the combination of innovation and passionate advocacy he helped us move towards a better understanding of our human need to live in real homes. Instead of trying to fit people into service models (the hospital, the hostel, the group home or an individual flat) he argued we should treat each person as an individual and work with them to help them get the housing and support solution that was right for them.
In those day Supported Living meant good support, one person at a time, and with no fixed models. However last year I attended a conference on Supported Living in London attended by senior managers, commissioners and many different service providers. It was very clear that now, when people use the term Supported Living, they just mean ‘a group home that is not a residential care home’. Supported Living has not only just become another model it has actually become the very model it was designed to challenge.
How did this happen? How did Supported Living lose its meaning?
Part of the reason is that the term Supported Living has now become just one option in the official system. CQC says:
Supported Living is where people live in their own home and receive care or support in order to promote their independence. If there is genuine separation between the care and the accommodation, the care they receive is regulated by CQC, but the accommodation is not.
This definition also influences how service providers are funded. If you can avoid being registered as a care home the your funding will be different - and usually better. But this also means that service providers have an economic incentive to ensure that the standards for Supported Living are as low as possible - making it as easy as possible to maximise funding and to reduce costs. As the 33% cut in social care continues to bite it is natural that managers will fall back on the mistaken assumption that ‘the more people we put together the cheaper things will be’.
I think this happens often. A good idea starts by doing good - by challenging and changing reality. But reality fights back; and so the good idea is converted into something much less challenging.
But you might wonder are group homes really are a problem?
When you support people in a group home what you are really saying is that the price of getting support is to have only half a home. It means people cannot fall out with you, or the people they live with, without losing their own home. This is a breach of human rights.
The UN Convention on the Rights of Persons with Disabilities states:
Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement. [Article 19a]
This is not how our system works. We work in opposition to the UN Convention, and we are undermining people’s basic human rights.
How can we do things differently? May be we just need to go back to basics. Perhaps we should accept the need for a variety of models, but these should be the natural models of ordinary life:
These 'models' are just the normal forms of home life. The models are not right or wrong - although they can be wrong for you at a particular point in time in your life. People are people and we all share the same desire to find the home that is right for us.
It is not Supported Living we need, it is human rights and the freedom to exercise those rights - and especially the right to have a real home of our own.
A few years ago a manager from a residential care home spoke to me at a conference. He said he was supporting someone who didn’t belong in a care home, and he wanted to help her move out. But he couldn’t because he was a Residential Care Home Manager. I replied ,“Don’t worry, because you’re also a human being - and as a human being you are free to help her achieve her goals.”
Perhaps service providers should think about it like that - how can we be more human - and how we can help people to realise their rights and to live the life that is right for them.
The publisher is Care Management Matters.
What Is Wrong with Supported Living? © Simon Duffy 2013
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.
intellectual disabilities, social care, Article
