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Why I fear for my daughter

It’s not so much the cuts to disability services that’s the problem, as how ideology is changing them

30 March 2013

9:00 AM

30 March 2013

9:00 AM

To listen to many disability pressure groups, adult social care for people with learning disabilities is being slashed by a heartless government. What few of them want to tell you, however, is that the government is spending far more than it needs to on looking after adults with learning difficulties, as well as exposing many to cruelty and exploitation, thanks to an ideological obsession with placing them in ordinary housing rather than the communities in which many have lived for decades.

I have an interest to declare: I have a daughter with learning difficulties who in two years’ time will qualify for adult social care. It is a transition, I have been warned by other parents, to be dreaded: children who were active and sociable at school find themselves as adults living lonely existences in social housing, with perhaps a work or college placement once or twice a week.

This, too often, is the reality of ‘Supported Living’, the now-favoured model of looking after people with learning disabilities. Supported Living is the culmination of 40 years of trying to ‘normalise’ the lives of people with learning difficulties. In 1969, 52,000 of them lived in NHS-run hospitals. Few mourned these institutions when they began to close in the 1970s. They were gloomy places accommodating people in the form of 60-bed dormitories. It was an arrangement influenced by eugenicists of the early 20th century whose aim was to prevent the ‘feeble-minded’ from contaminating the rest of society.

Instead, went the thinking, people with learning difficulties should live the same kind of lives as the rest of us. They should live in flats and houses, take the bus to work, cook for themselves. The preferred model is now to house people with learning difficulties in ordinary social housing, either on their own or with a maximum of four per flat or house, with full or part-time support from carers.

For those at the higher-achieving end of the spectrum, leading an ordinary life is a reasonable ambition. But no matter how enlightened the policy, it is always going to run up against the unfortunate fact that large numbers of the learning disabled — my daughter included — are never going to be capable of living lives which are independent in any sense the rest of us would recognise.

For this group there is — or at least used to be — a third option: living in a ‘village community’. These are group homes typically run by charities and housing several dozen people, with work opportunities and leisure facilities on site. One of them, Botton Village in North Yorkshire, founded in 1955 on Rudolf Steiner principles and conceived as a giant extended family, was brought to the attention of the public in a 2005 Channel 4 documentary, The Strangest Village in Britain. It depicted an eccentric place hopelessly at odds with the direction of policy and tickbox culture in Whitehall. In 2011 the village had a hostile report from the Care Quality Commission, reporting ‘major concerns’ with such issues as the filing of ‘care plans’.

While Botton survives, many communities built on a similar model have closed. Guided by official policy that is hostile to them, fewer and fewer councils — which ultimately fund them — will place people in them. Being on spacious sites which count as brownfield land, they have also become easy prey for property developers.

Not everyone, however, is convinced that their closure is part of a path towards enlightenment. Many residents have been uprooted after living in communities for years. Last week I was talking to a mother whose 27-year-old Down’s syndrome daughter has recently moved out of a village community. When the daughter first moved there eight years ago it was a happy place with 60 residents,  a football field, workshops and greenhouses. Residents could move around freely without having to worry about traffic. Then numbers began to dwindle until it became a ghost community with half a dozen residents left. Last summer, the daughter’s boyfriend was taken out: an event which led to her leaving, too.

At present she is living back home with her 66-year-old mother, but the council has suggested that she moves into Supported Living. It won’t mean more freedom: she will be hampered in her ability to live in an urban environment by a lack of spatial awareness that makes crossing a road by herself impossible. She will need a full-time resident carer.

It will also be far more expensive for the taxpayer. In her village community there was one full-time carer for 14 residents; in future her living arrangements will require one carer for every four people. Like other people in Supported Living, she will have to be ferried around by taxi to distant workplaces and other activities — something which used to be on site. While the model of Supported Living assumes that there are always day centres, college courses and work placements to ensure residents have an active social life, many of these services have been cut.

A comparison of social care costs by the now-defunct Personal Social Services Research Unit at Kent University in 2010 revealed that to keep a resident with severe learning difficulties in a village community costs an average of £1,105 per week. To keep a resident in Supported Living, with no more than four residents per property, costs £1,577 per week.

Local authorities have a perverse incentive to favour the latter, however, because turning a resident out of a village community and into Supported Living saves them money. A local authority pays the full fees of a resident in a village community, but for a resident in Supported Living the authority only has to cover the costs of providing the carers. Rent for the property is covered by housing benefit, paid from central government funds.

The scandal of Winterbourne View — the Bristol hospital closed after a BBC Panorama exposed physical abuse within its walls — has provoked more hostility towards anything which even vaguely resembles an institution. Yet few appreciate that Winterbourne View was a psychiatric assessment unit, not a home. In December the government announced the closure of all units like Winterbourne View.

Moving people to ordinary housing in ordinary urban locations is, however, hardly a guarantee against abuse. For many it has been a recipe for becoming bullied and exploited. Two years ago the Foundation for People with Learning Difficulties published a study into the experiences of 67 randomly selected individuals living in the community. Among this group, one man was befriended by a prostitute who proceeded by take over his flat to use for her clients. Another was adopted by a gang who used him to buy their drugs. Another had his kitchen taken over by a kebab joint, which used it as an overflow facility.

Given the lives of many people in our urban ghettos, that is a kind of ‘normalisation’, I suppose. Whether it is better for the individual than life in a dedicated community is another matter.

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