« Spelling out why black schoolboys fail | Home | Follies of Contrary Mary and ‘our crowd’ »
Focus: Loneliness and exclusion . . .and all in the name of 'inclusion'
Care in the community has failed the vulnerable, argues Minette Marrin
Life may often seem hard enough for children with learning disabilities and their families. Unfortunately it can get harder still when the children become adults. Before long, and despite the best of intentions on all sides, such vulnerable people will all too often find themselves living alone in a bedsit, bored, neglected and stuck indoors watching television. They might want to go swimming or shopping, or off for an outing, but they cannot do so without help and quite often that’s in very short supply: Britain’s social services budgets are already overwhelmed with need.
It is hard to imagine the real cost of round-the-clock support for an adult with learning difficulties who lives alone in the community but who cannot cross the road or take a pill or boil a kettle without help; not surprisingly, very few get all the help they need. This diminishes their lives; sometimes it endangers them. For example there have been several recent cases of adults with learning disabilities in hostels, alone and without proper help, running baths and then scalding themselves badly.
Nobody wants any of this; tragically it is in large part a perverse consequence of the policy of inclusion. Inclusion sounds like such a good idea for people with learning disabilities. But if you unpick the elaborate and highly politicised ideology behind inclusion, it begins to sound a great deal less reasonable, and tragically impractical.
It all began with an understandable revulsion against some of the old long-stay mental handicap hospitals and institutions, which were often — but not always — indefensible. In the worst of them, people with learning disabilities were shut away from the normal world, denied any say in how they lived or what they did and often drugged to keep them quiet.
In the 1960s and 1970s two ideological movements grew up in protest — normalisation and empowerment. The advocates of normalisation and its “social role valorisation” insisted that people with learning disabilities should lead as closely as possible a normal life within the normal community and that all necessary public services should be provided to make that possible.
This view is now orthodox in all social services departments and training. The idea of empowerment is related; it comes from the civil rights movement, and holds that people with learning disabilities should have absolutely equal rights, including the right to marry, have children, work, vote, sign contracts, and even to sit on juries.
Both theories are underpinned by a relatively new concept of disability. Traditionally disability has been considered a problem of the individual, who might be blind or deaf or intellectually impaired; this is the so-called “medical model of disability”. In progressive thinking this has been replaced by the “social model of disability”.
This view places the responsibility for disability on society; it sees disability in terms of the oppressiveness of people without disabilities and their failure to remove the social barriers that exclude people with disabilities from lives as full as their own.
Most people, wondering about the future of their intellectually disabled son or daughter, know and care little about any of this. But it has profound — and I would say perverse — consequences for them personally. It is this thinking that has driven some of the rapid and painful changes of recent years. It has forced the emptying of all the long-stay mental hospitals and larger homes — even those which residents and families loved, and which could have been refurbished; the anguish this has caused to elderly parents and middle-aged children has been unspeakable.
Regardless of this anguish, this ideology has thrown thousands of vulnerable people into care in the so-called community, particularly after the Care in the Community Act of 1990, and not always with proper support. It has shut down many special schools, some of them, again, much loved by children and their families. It has led local authorities to take a rigid, one-size-fits-all approach to adults with learning disabilities, regardless of their wishes.
The orthodox model is a small, perhaps single-person flat or house in an ordinary street; other ideals that have worked well for some, such as larger group homes, or somewhere in the countryside, are anathema. Homes like this have been broken up over the past 25 years, often much against the wishes of the families. With them have been lost all the economies of scale that meant more staff support, more friends, more outings and better facilities.
Although some experts have belatedly realised that these other ways of life can be very good, and although the government issued an important white paper in 2001 called Valuing People, admitting that different arrangements can be excellent and that families must be involved in choice, local authorities’ social services departments are still very resistant.
I did a written survey of all of them in England and Wales about a year ago, and while all acknowledged their statutory obligations to offer choice under the white paper, at least half were not really prepared to allow or to pay for anything but the orthodox model. So much for choice.
The tragedy is that people imbued with this thinking talk of choice and empowerment, but in fact what they really mean is the opposite; the vulnerable must be “empowered” to “choose” the right thing.
What’s also very sad is that although the theory is that people with learning disabilities should have the chance of making normal friends in the normal community, subsequent research suggests this doesn’t actually happen — as one might have predicted.
According to Professor Eric Emerson, one of the leading experts in this field, when people move into ordinary houses in the community, they do see more of people without disabilities. But this increase is due either to more visits from family or to brief contacts in shops and so on. Almost none of the increase is due to independent adult friendships developed with neighbours or normal friends. What this means is loneliness and exclusion, and all in the name of inclusion.
Even more striking is another finding from a study in 2002 that people with learning disabilities are happier when they have a larger number of people with learning disabilities in their social network. This hugely undermines the value of the care in the community experiment. And it means there was little or no justification in closing down other services, against people’s wishes.
Tragically this ideology has coincided, quite mistakenly, with cost-cutting. Both Labour and the Conservatives quite wrongly thought care in the community would be cheaper. More recently there’s been pressure for people to move into what’s called supported living, which is very much like care in the community. That’s mainly because the way it’s financed looks cheaper for social services departments.
Amid all these mistakes, something more sinister has developed in the name of inclusion and normalisation.
Parents have legal control over their children. But when children with learning disabilities become adults at 18, their parents cease to have any legal authority in their lives. These grown-up children will need to make many choices about their lives, throughout the years ahead, and because of their disabilities they will have grave difficulties in choosing, or even understanding the options. So who really chooses, effectively?
That is a grey area in law, but one thing is clear. The parents can effectively be cut out of the loop, and sometimes they are. Social services can do so with little difficulty, if they see fit. If this happens, parents and families of vulnerable adults, who care most and know best about them, are powerless. The new Mental Capacity Act, which parents hoped might somehow empower them to make important decisions with their disabled adult children, has done nothing whatsoever to help.
The act should be radically revised to give some decision-making powers to families, and all people with learning disabilities should be granted direct payments, to be able to choose and pay for their services themselves.
The Sunday Times | Sunday, June 12, 2005
