Friday is a crucial day in the lives of Britain's 5.5m disabled people and their families. The government is planning to crush a popular bill which, after years of inaction, seeks to radically improve the way we care in the community for people who are mentally or physically disabled. BRIAN DEER, social affairs correspondent, reports on the campaign that is being mounted by politicians of all parties to change ministers' minds
PAULINE HAMPSON and her daughter Jane are among the last to arrive at Wednesday's meeting of the 19-plus group in Euxton Lancashire. Pauline is widowed and blind, and Jane, aged 17, is so severely handicapped with cerebral palsy that it is a considerable feat to make the journey at all. Fortunately, Pauline's father is able to drive them - though at 64 he finds lifting Jane is becoming a strain.
They don't always come to the group, which brings together parents of children with disabilities. But this week there is something vital to discuss. On Friday, the government plans to wreck what has been called the most important piece of legislation for disabled people in the last 15 years - and Pauline has come to give her side of the tale.
Jane is carried in first and then Pauline's father goes out to help his daughter find her way to the door. This week's meeting, held at the home of the group's chairman, is attended by a dozen mothers and fathers.
The 19-plus group was started last September as a way for local parents to give each other support. Its title comes from the main concern of its members: what happens to the children when they leave their special schools? Once young disabled people reach 19, the role of education ends and the full burden of caring for a severely handicapped adult falls on the parents.
As the meeting waits to begin, the chairman, Janet Bovington, passes round photocopies from last week's Sunday Times - "Ministers block a better deal for the disabled," reads the headline - and a similarly depressing report is cut from the following day's Guardian.
Tonight there is just one item on the agenda: Tom Clarke's Disabled Persons Bill, to which the government has tabled drastic amendments for debate on Friday. The guest speaker, arriving later, is local MP Den Dover, Conservative member for Chorley, whose support the group desperately wants.
They briefly discuss the amendments and work out what they want to ask Dover. First, will he support the bill in its report stage this week? Second, will he abandon his constituency meeting and go to the Commons to vote? And third, if the bill is passed, will he demand that the government makes the new law work?
At a little after nine, Dover settles on the Bovington family sofa and, after listening to the group's arguments, offers his help.
AMONG private members' initiatives there have been few more broadly welcomed than the one pioneered by Clarke, Labour MP for Monklands West. During its second reading in the Commons in January, MPs from the Tory right to the Labour left stood up to support its aims. Among organisations for disabled people, local authorities and professional bodies, endorsement of its principles has been 100%.
What has won Clarke's bill this wide support is that it tries to deal with failings in so-called "community care". Born in the late 1950s and becoming ever-more important, this doctrine holds that elderly, disabled, mentally ill and chronically sick people are almost always better looked after at home than they are in an institution.
The official view was spelled out in a ministerial response to a report last year from the Commons social services committee: "The government confirms its commitment to the development of the integrated network of central policies and local services necessary for community care, and its priority for mentally ill and mentally handicapped people."
But despite such statements of support, tight spending controls on social services in recent years have helped to create serious difficulties for community care plans. As the numbers needing help have risen and as hospitals have reduced their role, three key problems have emerged for the disabled and the people who care for them:
* Mentally ill and handicapped patients are often discharged from hospitals with little planning, and sometimes have nowhere suitable to go. As a result, large numbers end up in substandard housing, sometimes sleeping rough and often needing readmission to an institution when their condition gets worse.
* Care at home often means relatives have to make an enormous sacrifice and sometimes have an intolerable burden put upon them. Women usually bear the brunt of this, perhaps devoting their lives to a disabled child or parent. Often this becomes too great a task and they desperately seek assistance. Social services frequently fail and admission to a hospital is the only way out.
* Although full-time education is provided for disabled children, when this ends there is often nothing to take its place. Day centre provision is very patchy, and as the 19-plus group argues, it is sometimes only possible to care for people with disabilities if there is at least the regular support that school or training gives.
Clarke's bill aims to tackle some of the problems by giving comprehensive new rights to disabled people. One of the main effects would be to bring into statutory force optional powers already held by local authorities under the 1970 Chronically Sick and Disabled Persons Act to give more help to disabled people at home.
A key clause in the bill will oblige hospital managers to give 28 days' notice to social services when they intend to discharge a patient with a mental disorder who has been in hospital for more than six months. This would help prevent instances where people were sent away with no clear plan for the future.
Other parts of the bill would force local authorities to formally assess the capabilities of a relative or friend to continue looking after a disabled person. This assessment would lead to a range of new services, including home helps, housing, holidays, travel assistance and telephones becoming a right under the 1970 act.
For the 19-plus group, another clause is of prime importance. This obliges education and social services authorities to ensure that a child is assessed for future needs a year before leaving special education. The intention is to ensure that daytime provision is secured where it is needed, lifting a heavy responsibility from parents.
The government, however, wants all of these commitments scrapped in favour of a more modest requirement of local authorities that they carry out a formal assessment and indicate why services have been refused. These amendments will effectively leave disabled people in much the same situation as now, if a little better informed.
Ministers have decided to table these amendments, which are widely seen as wrecking the bill, because they fear Clarke's proposals will cost up to £100m a year. But Clarke's supporters say that £25m is nearer the mark and that it is about time that the lowest priority group for community care policies had some money spent on them.
"We have gone through a revolution as a result of what we have learned about the perils of institutional care," says Martin Davies, professor of social work at the University of East Anglia. "But all the research suggests that local authorities don't really swing into action until there is primary legislation to make them."
FOR Pauline Hampson, the outcome on Friday is now the main thing on her mind. She is not looking for major help from social services, but would mostly like the opportunity just to have a short rest. In 17 years, her daughter Jane has only had only two periods of holiday lasting more than a week and that was at homes run by Dr Barnardo's.
"I'd really like the chance for someone else to look after her for a short while, so dad and I can have a holiday," Pauline explains. "Although I love her very much, it is very tiring to care for her. It is a never-ending round of feeding, changing nappies and getting her ready for the ambulance to take her to school."
Under Clarke's bill, Pauline would be able to apply to her local authority for holiday help, or "respite care", and after an assessment of her needs, it would be hard for the authority to refuse her. In the extreme event of a denial of help, Pauline would be able to apply to a county court for an order compelling the authority to give assistance.
Jane is very severely handicapped by cerebral palsy - a brain defect which leaves her intelligent, but unable to communicate in any way. She cannot walk or crawl and is entirely dependant on the care her mother and grandfather give her, and on the five hours a day she spends at her special school.
Pauline is now alarmed that Jane is approaching the age when school will end and there is no alternative to provide her with daytime care.
Under Clarke's bill, a smooth transition to a day centre place would also have to be considered by the local authority. These places are very scarce and more would have to be provided as a result of the bill.
But Pauline's biggest worry is what happens when she and her father finally buckle under the strain. "The first thing I think about all the time is what happens to Jane if I am ill?" she says. "I don't ever want Jane to end up in an institution. She needs the sort of care that you simply can't get outside a proper home."
Ironically, by depriving Pauline and Jane of modest holiday help and some reassurance about the future, the local authority may be storing up a much greater financial burden. At present, Jane costs the state just £3,200 a year in benefits paid to her mother - a remarkably small sum for a child who needs constant care.
This compares with at least £13,000 for the costs Jane would incur if Pauline handed over her responsibilities to the local authority and the child was placed in an institution or foster care. Pauline's father, Edward, receives only £23 a week in invalid care allowance for his responsibilities to his blind daughter, so the savings in total are very considerable.
SUCH long-term savings from the new bill are stressed by its supporters. "It should have a major effect on reducing costs, both financial and personal," said Andrew Rowe, Conservative MP for Mid-Kent and chairman of the all-party social services panel. "It deserves government support and I hope ministers will not obstruct it."
Rowe is one of a growing number of Conservative backbenchers who are angry about the government's decision to table such major amendments. And there is evidence this weekend that ministers have a serious revolt on their hands. Government whips have already approached some Tories asking them to oppose the bill, but so far have not had much success.
Organisations for disabled people have launched a huge lobbying exercise, and Brian Rix, general secretary of Mencap, has called on his 500 groups to contact their MPs to demand they support the bill. And on Wednesday this week, hundreds of disabled people are to rally outside the House of Commons to ensure that no politician can overlook the debate.
Among those attending the rally will be a small contingent from Euxton. Most of the 19-plus parents cannot leave their children in order to lobby parliament - Pauline and Jane are among those who can't be there.
"It would be just too much for us to go down to speak our minds," says Pauline. "But we should have the right to be represented, instead of always being shoved around."