news analysis of first annual report from the learning disability taskforce

Michelle Chinery is proud of the Learning Disability Task
Force’s first annual report Making Things Happen published this
week, writes Anabel Unity Sale.

As report co-author and task force co-chairperson, she was
determined to make sure it was written in an accessible manner for
people with learning difficulties such as herself.

Publishing an accessible report is not tokenistic. This is not the
“accessible” version of a more jargon crammed report for people
without learning difficulties. This is the only version.

Created in December 2001, the task force is charged with monitoring
the implementation of the government’s Valuing People white paper.
‘Making Things Happen’ details the 11 areas it investigated last
year. It addresses subjects such as the work of the National Care
Standards Commission, transitional services for young people with
learning difficulties, learning disability partnership boards and
family carers.

The 60-page report says that although the Department of Health’s
learning disability team is involving people with learning
difficulties in what the department does, the task force is not
convinced all parts of government are doing the same.

Chinery says: “We want to make sure other government departments
are including people with learning difficulties in their work. All
government documents need to be made more accessible and put on
tape.”

The task force has told the NCSC and the government that people
with learning difficulties are worried that those with supported
living tenancies may be forced back into living under residential
care rules. Rob Greig, Valuing People support team director of
implementation, admits there is “undoubtedly a risk” this could
happen but says he is “optimistic” the NCSC will not cause it
to.

Equally the task force, which is backed by Greig, is calling for
people not to be moved into supported living arrangements purely
for financial gain. “A residential home should not be called
supported living unless real changes are made in the way the place
was run. It should not be done just to get more money,” the report
says.

Hazel Morgan, head of the Foundation for People with Learning
Disabilities, says the approach to supported living needs to be
flexible. “It is difficult for the NCSC to reconcile the needs of
different groups such as older people. It should take a close look
at the needs of people with learning difficulties to ensure they
have a good quality of life without too much bureaucracy,” she
says.

Appropriate transition services for young people with learning
difficulties moving into adulthood are another key issue. Chinery
says a lack of communication between child and adult services can
result in some people with learning difficulties not receiving the
help they need. “It is important that services continue because
they might have high support needs,” she warns.

Chinery says the government’s Connexions guidance service for young
people will play a key role in smoothing this transition.

Tony Johnson, who is a community support unit district officer at
learning difficulty charity Mencap, agrees that it is vital that
transition services are improved. He argues that person-centred
planning for young people, including health action plans, needs to
be developed and carried forward. “Without decent links, people
lose one set of services and miss out on another,” he says.

According to Mark Brookes, project worker at learning difficulty
charity Values into Action, the task force should go one step
further and give the government “a kick up the backside” to improve
transition services. Brooke, who has learning difficulties and is a
member of self-advocacy group People First Havering, based in east
London, says services in his area are “going backwards not
forwards” because they are closing down.

Greig says the Valuing People support team aims to publish a piece
of work in the Spring carried out jointly with Connexions, the
Department of Health policy branch, the special educational needs
regional co-ordinators, and Quality Protects about what transition
services should be doing.

Learning disability partnership boards are central to the delivery
of Valuing People. So, the task force joined with the support team
to review how learning disability partnership boards, which are
supposed to bring together local agencies, people with learning
difficulties and their carers to discuss service provision, are
operating in each local authority area. Making Things Happen
concludes that some boards are failing to include people with
learning difficulties from ethnic minorities.

Chinery acknowledges the importance of boards rectifying this
problem and says providing an interpreter and translating reports
into other languages could help people from different racial groups
feel included in the boards.

Johnson adds that every representative body in the country
struggles with this issue. He says: “Informing and consulting
people in their own community groups is part of the answer but can
often be difficult in regions where there are very small numbers of
people from minority ethnic groups.”

Morgan suggests that partnership boards have a champion from an
ethnic minority and an ethnic minorities sub-group to put their
needs on the agenda.

Concerns from the National Forum of People with Learning
Disabilities about the support needs of family carers prompted the
task force to work together with the Valuing People support team to
consider this issue, too.

Chinery says there is little support available for family carers
and says more local support groups are needed to enable them to
“share their good and bad experiences”. She also recommends that
when the government, social services, primary care trusts and
health authorities consult on a national or local level, the views
of family carers be sought.

Brookes agrees not enough is done to support family carers. “The
task force needs to go back to the government and say it needs to
pour more money into respite care. Without this support there will
be problems,” he warns.

Johnson says carers should be “viewed as part of the solution and
not always as part of the problem”. He urges health and local
authorities to establish, maintain and improve levels of trust with
family carers. This can be achieved, he says, by making
consultation genuine, by showing that their opinions and needs are
being considered, and by involving them in the planning of their
daughter or son’s future.

While acknowledging that the government has a role to play, Greig
argues it is up to local authorities to give family support “a
greater priority”. He says the Valuing People support team is
working with the task force to develop guidance on family friendly
services, which they hope to roll out after Easter.

One bone of contention highlighted in the task force’s report is
the government’s failure to award local authorities additional
funding to help implement Valuing People.

Johnson says doing so would prevent learning difficulties services
being squeezed out by other local authority priorities. “Specific
funding is essential as it would help secure particular targets in
areas such as day service modernisation and homes for people living
with older parents where there is a large backlog of work to be
done and funded.”

Morgan echoes the call for specific ring-fenced funding: “It’s
really important that Valuing People is well resourced and its
principles are translated into practice. Otherwise people with
learning difficulties and their families will become
disillusioned.”

Greig says anecdotal evidence suggests some learning difficulties
services are not getting the share of the increase in public
spending from the last comprehensive spending review he hoped they
would.

He says: “The emphasis is now on everyone in the learning
disability field to make a strong and coherent case for it to be
included in the next review.”

‘Making Things Happen: First Annual Report of the Learning
Disability Task Force available
here