The following article, by Housing Options lead advisor Maurice Harker, is from Community Connecting Magazine (Issue 8).

Staying Out of the Mainstream

An extraordinary fact

An extraordinary fact cropped up in recent CSCI publication ^[1]. It said that eligibility criteria prevented many people from receiving state funded care. That's what the Report said but with rather more words and many pastel coloured charts. It went on to say there are also lots of people lost to the system.

Housing Options hears from lots of people lost to the system. There have always been large numbers of people with a learning disability who, after school age, stay on at home with their families until parents are quite old. But then what happens next? Sometimes people were unsure or afraid of the alternatives or were never offered other options.

This isn't the extraordinary fact. This has been going on for years and years. There were two polar opposites, home or institution. Neither have been very satisfactory. Neither offer a road to independence.

It was decided in the 60's and 70's that the institutions should close. Instead residential care in the community was proposed. The 1971 White Paper on learning disabilities ^[2] proposed a major shift towards community from hospital services. There were 52,000 beds for in patients with learning disabilities and nearly all of them have moved to community based services but most in registered care homes.

In 1983 there was design guidance for local authorities providing new community placements ^[3] suggesting special 16 -25 bed units should be built. But in 1990 we turned a corner. When the Community Care Act was passed in 1990 there was formal policy recognition of the need to enable people to live as normal a life as possible in their own home or in a homely environment in the community. ^[4]

Quite an extraordinary fact

In 2005 the National Survey found just under one in four people in supported accommodation (22%) were still living in houses for more than 10 people ^[5]. That's quite an extraordinary fact.

It was three years after Valuing People had said the key principles were legal and civil rights, independence, choice and inclusion - being part of the mainstream. How is living in a house with ten others being in the mainstream?

Valuing People said people should be able to choose where and how they live. And this is the extraordinary fact. But instead of 52,000 bed for in patients with learning disabilities the new CSCI Report says on Page 51 that there are now 66,076 places in care homes for people with learning disabilities. In Table A1 on Page 162 we can see that the bulk of spend on services for people with learning disabilities is on residential care homes.

Where are the inclusion and rights?

What is a residential care home? It is an establishment providing accommodation together with personal care. An establishment is not your own home, it is an establishment. Where is the inclusion in this? Your own home is should be yours not the property of a registered manager. Valuing People wants people to be part of the mainstream not being part of an establishment. That is a placement under Part III of the National Assistance Act 1948 in an establishment registered under the Care Standards Act 2000, not citizenship. Your rights, independence and choice are at the disposal of the registered manager.

So, now I'm sorry about this. I did refer to finding an extraordinary fact. There are really two extraordinary facts. The first is that for 35 years we have been bringing an end to life in institutions and the second is that we haven't. In fact there are more. It would be good if whoever writes and introduces the policies on rights, independence, choice and mainstream could talk to CSCI who provided the Report and register care homes.

It is not that Residential Care Homes cannot be well intentioned and offer a means for regulation and supervision. It's just that they are not your own home, they are an establishment.

So can we do two things much better? One - getting people their own homes. Two - a proper system for the regulation and supervision of the care and support you receive in your own home.

Maurice Harker
harker@housingoptions.org.uk

[1] Commission for Social Care Inspection 2008 The State of Social Care in England 2006-07
[2] DHSS 1971 Better Services for the Mentally Handicapped
[3] DHSS Local Authority Building Note No. 8 (1983), Residential accommodation for mentally handicapped adults, HMSO
[4] DHSS 1989 Caring for People
[5] Emerson E et al (2005) Adults With Learning Disability In England - National Survey 2003-4 NHSIC

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