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SITUATION
CRITICAL
The
Sunday Times (London) April 6 1986
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."
| brian deer |
Copyright,
Times Newspapers Ltd. All rights reserved. No portion
of this article on Tom Clarke's disabled person's act
1986 may be copied, retransmitted, reposted,
duplicated or otherwise used without the express
written approval of the copyright owner. Responses,
information and other feedback are appreciated - via
Brian Deer's homepage.
