Whose child is this anyway?

Parents of the mentally handicapped are alarmed at their children being discharged into the community. Mary Braid reports
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Indy Lifestyle Online
Every Saturday for 25 years Helen Whitby, 71, has made the ritual 20-mile round-trip from her terraced, council house on the Fife coast to Lynebank Hospital in Dunfermline.

Since the day in 1971 that the district nurse finally browbeat her into accepting that Lynebank - the Scottish county's newly opened hospital for the mentally handicapped - was the best place for her "retarded" daughter Barbara, the grey-haired, great-grandmother has never failed her youngest and most vulnerable child.

She fought hard to keep Barbara, now 42, at home where she was happy with her four brothers and sisters in the community she knew. "The local bus conductress made sure she reached her special school and the nurse always called to take her to watch the babies being bathed," remembers Mrs Whitby. "Barbara always loved babies.

"I felt we were pushing her out but the district nurse told me I was being selfish and that it was me who would miss Barbara, not Barbara who would miss me. Later I realised she was right. I couldn't provide the work, the discos and the friends Lynebank could."

It is hard to know if Barbara remembers the conductress or the babies. She cannot talk or walk. Her expression is often blank. Mrs Whitby says she has fulfilled doctors' predictions that she would not reach the developmental age of four. In recent years Barbara's health has deteriorated and everything has to be liquidised for her. In the hospital canteen, surrounded by the noisy, chaotic throng of patients whose handicaps - or learning disabilities in modern parlance - range from the mild to profound, Mrs Whitby gets on with the delicate business of feeding Barbara by syringe. She is also "mum" to a band of residents she has adopted over the years. Pathetically few have regular visitors of their own.

Mrs Whitby sits with a handful of other elderly widows including May Harrower, 63, who suffers from emphysema and arthritis, and Chrissie Brown, 76, who walks with a stick. They are similarly devoted to their severely mentally disabled daughters - Dorothy, 40 and Helen 51 - and, despite increasing frailty, hardly miss a visit. Through their daughters' lives can be traced every policy change since the 1960s when local authorities routinely sent parents blunt, hurtful letters telling them that their children were "uneducable". A decade later the same authorities were concentrating education and other specialist services in residential hospitals like Lynebank only to reverse the policy completely in the 1980s to care in the community. At the start of the 1970s, 68,000 people were resident in hospitals for the handicapped. Today just 11,000 remain. But while a series of murders have made community care for the mentally ill highly controversial, the revolution it has brought about for the mentally handicapped has been a comparatively quiet affair.

Beneath a more serene surface, controversy is bubbling. Ministers are considering a report by the Law Commission which highlights the gaps that community care reveals in the rights of handicapped people and their parents. In recent months, Mrs Whitby says, the policy has revealed the weakness of parental rights. Today the atmosphere is particularly charged. Barbara - like other Lynebank patients - has received a letter from Roseanne Fearon, manager of Lynebank discharge programme, informing her the hospital is entering the final phase of a programme that has already moved half the 400 patients into private tenancies and small groups to homes within the community.

The letter opens with an apology: in the interests of expediency the charge nurse has "on this one occasion" been given permission to open it and, if Barbara permits, to read and explain the contents. Barbara is invited to participate in her own discharge and relatives are being informed so they can support her in her decisions. Confidential interviews are offered at a place of Barbara's choice and she is invited to attend a group meeting in her ward.

Mrs Whitby rolls her eyes at the notion that her daughter could give permission to open the letter, let alone understand its contents. Barbara, she says, has no idea what community care is and no real say in plans to move her from a hospital which, whatever its shortcomings - and according to a recent Scottish Health Advisory Service report there are many - has been home for most of her life. Mrs Brown is similarly incensed. "My daughter just repeats anything you say," she says. "She does not understand. She doesn't even know the time of day or when to wash, dress or feed."

"It's farcical," says Mrs Whitby. "How many people in here can say they want to go to live in the community? To ask Barbara is like asking a four- year-old where she would like to live. What is worse is that they ignore what her parents want. We have found out that we have no rights after our children reach 18 even if their mental age is only four."

It is the second letter to convince them that the world has gone mad and all reason turned upside down. A few months ago a pro-community care letter, apparently composed by two Lynebank residents, was published in the local free paper. Mrs Whitby and her friends say they were incapable of writing it. They claim "the boys" were manipulated by social workers.

At the high-rise headquarters of Fife social work department in Glenrothes, Roseanne Fearon, only recently appointed to oversee the Lynebank Discharge Programme, will not comment on the letter to the local newspaper. It was before she took up the post. She says she understands the concerns of some relatives but insists they are fully consulted and argues that people with learning disabilities have been under-estimated for too long. "These people have never had the opportunity before to take their own decisions. Deprived of opportunities they often seem more disabled than they are."

She points proudly to four colourful paintings on the wall. The artists all have severe learning disabilities. On one, beneath a swirl of colour, is written the message, "I want to work things out for myself" and on another, "My future is bright with flying colours, I'm proud of who I am and my big achievements." The words were written by the people who ran the art project, but Ms Fearon says that the sentiments are wholly the artists'. The paintings apparently sold like hot cakes at a recent special needs conference in the US.

Relatives believe the authorities are cynically exploiting weak parental rights to push their own policy. But Ms Fearon insists that people with learning disabilities have their own rights after the age of 18. She adds that an independent advocate system is being established to protect and separate a disabled person's interests from that of the local authority - and where necessary, of course, from the parents. Exactly who will decide when parents' and children's rights diverge is not clear.

"We are helping people to leave hospital," said Ms Fearon, who sees community care as part of the empowerment of the learning disabled. "Learning disability is not an illness. Placing people in Lynebank has not helped the community at large to become educated." She insists that residents now living in the community are delighted by the change. Despite lobbying by Rachel Squires - the local Labour MP and a critic of the blanket application of community care - for the authorities to provide other, more supported options for the most vulnerable Lynebank residents, Ms Fearon insists community care benefits all, even those with the profoundest handicaps. "My experience is that people who benefit most from community care are the most dependent."

But even parents who support living in the community are worried by their apparent lack of legal rights. Margaret Duncan's son Craig, 31, has made a successful transition from Lynebank to an ordinary house in Dunfermline. "He and two other men have12 staff between them. Within four weeks of moving he was feeding himself. He had not done that since he was eight."

But she is concerned about the lack of choice being offered to parents. And she is furious at the notion that they should not have the final say. "No one should do anything to my son without asking me first. Lots of parents are concerned about the situation. We are looking into it."

Fighting for other options is an uphill struggle at a time when community care is seen by local authorities as the only solution. Richard Jackson, 72, is founder of ResCare, a national organisation which campaigns for special sheltered villages and communities to be created so the learning disabled can live together in safety. To proponents of community care this offers the same old segregation. But the gulf between ResCare's beliefs and the prevailing community care orthodoxy is glaring.

For example, Mr Jackson, whose son Steven, 45, is profoundly disabled, makes no apologies for using the term mentally handicapped. When ResCare balloted its members on whether they would prefer to switch to the term learning disabled, 92 per cent said no.

Mr Jackson says community care is fine for "those who can cope and get around" but that it becomes a "prison" for those with greater needs. In a recent report by ResCare supporters Baroness Cox and Lord Pearson, community care was judged a triumph for some learning disabled people and a disaster for others. It claimed a Medical Research Council report following the fortunes of former handicapped patients over nine years found that community care was positive for one third but that another third suffered a serious deterioration in their quality of life.

Mr Jackson complains that the late realisation that community care is not the best option for everyone suffering from mental illness also applies to the mentally disabled. Many parents, he says, want a sheltered set- up for their children that would allow them to mix with their peers in safety. A handful of such schemes exist in the voluntary sector, but he claims blind ideology has so far stopped local authorities setting them up. ResCare's push - which has won the support of some ministers - for them to be established on old hospital sites is resisted because councils and health boards say they need to sell the land to pay for community care, he claims.

"If we are not careful we may witness the abdication of the state from any real responsibility for those that cannot care for themselves," warns Mr Jackson. "People with mental handicap do need lifelong support. Unfortunately mental age is not recognised in law.

"Generally we find that officials are very keen to point out that parents have no rights after their handicapped children reach 18. But they are eager to adopt those rights for themselves."

Mrs Whitby, Mrs Brown and Mrs Harrower maintain they know what is best for their daughters. They claim they can see that former Lynebank patients are not coping. They say they have seen them hanging out under the town's railway bridge, lonely and looking for friends. The local community, they claim, has often proved hostile and they have no confidence that the current level of investment in community care will be maintained. They can no longer die knowing that their daughters will be safe and well cared for.

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