news analysis of claims that carers of people with learning difficulties lack support

With children and older people vying for the lion’s share of
social services budgets, it was all too inevitable that learning
difficulties services would emerge as the poor relation in money
and profile terms, writes Clare

Recent reports back this by finding that services for people with
learning difficulties are under-funded and not doing enough to
improve the lives of these vulnerable people and their carers and

A report published this week by learning difficulties charity
Mencap, to coincide with National Learning Disability Week,
highlights that many of the carers looking after the 145,000
children and adults in England and Wales with severe and profound
learning difficulties at home, lack support from councils.

‘Breaking Point’ says six out of 10 families are either receiving
no short-break service or one that is so minimal it does not meet
their needs. One in three families have had their respite breaks
reduced in number during the past year, and six out of 10 families
on a waiting list for a short break have been waiting for at least
six months. The charity describes carers as feeling suicidal as a
result of the lack of support. Eight out of 10 families have
reached “breaking point”, the report says.

Mencap’s study follows publication of ‘Planning for Tomorrow’ by
the Foundation for People with Learning Disabilities, which finds
that learning disability partnership boards are struggling to
identify, meet and plan for the needs of older family carers of
people with learning difficulties.

The boards were established under the Valuing People white paper to
make change happen locally in learning difficulty services. But the
charity’s survey of more than 70 such boards finds that not even
half know how many people with learning difficulties live at home
with a family carer aged 70 or older, let alone meet the target of
planning services in partnership with them.

So, after two years of Valuing People, why are learning
difficulties services still not as they should be?

“Mencap has found that local authorities do not see families of
disabled children and adults as a priority,” the charity says.
“Because of a need to save money they leave families to cope alone
and do the very minimum to support them.”

Mencap chief executive Jo Williams adds: “Clearly
some are getting assessed, but services are not being delivered as
a consequence. This raises expectations and leads to disappointment
and sheer despair.”

But the Association of Directors of Social Services’
spokesperson on learning difficulties services, Bill
denies that these services are a low

About half of social services budgets are usually spent on older
people’s services, and a quarter is spent on children’s services.
But Robbins points out that the third largest area of expenditure
is on services for people with learning difficulties, which are
“usually about 10 per cent of gross revenue budgets”, he

“Services for people with learning difficulties are not a low
priority, but it cannot be denied that we do not spend a vast sum
on supporting carers,” he says. “Carers want regular breaks and we
probably struggle to give them an annual break. Carers need

“But we are driven by performance indicators and other government
objectives linked to grants and funding which take a greater
priority than learning difficulties, such as Quality

The key is accommodation, he adds, insisting that if people with
learning difficulties had a wider accommodation choice, the
dependence on carers would not be as great.

Closing long-stay hospitals – a priority in Valuing People – has
taken a lot of energy and a “comparable amount of energy and
resources has not gone into accommodation choice in the community”,
Robbins says. “To address this, there needs to be the same sort of
resources put into community accommodation as put into closing
long-stay hospitals.”

While the foundation report questions the achievements of learning
disability partnership boards, another Mencap report, ‘Out of
Sight, Out of Mind’, published in March, questions their

It finds that decisions about cuts in services are being made by
departments without the agreement of the boards, thus denying many
people with learning difficulties the chance to influence decisions
about the services provided for them.

Williams says the picture today is “patchy”. In some areas there
are many service users on the boards; in others boards rarely even

Service user Karen Flood, who is a member of the
Liverpool partnership board, confirms that some boards still do not
have anyone with learning difficulties sitting on them.

Flood believes boards should be made more accessible to service
users and the information they discuss produced in a format that is
easier to understand. Otherwise, non-service user members “speak
over your head a bit”, she says.

But, despite these difficulties, she remains upbeat. “It’s not
going to change overnight, but we’ll get there,” Flood says

Robbins says councils should listen to the boards and take them
seriously. “What the boards have achieved is the fact that local
authorities with their partners have to plan transparently with
carers and service users.”

Rob Greig, director of implementation of Valuing
, says: “A couple of years ago, people with learning
difficulties were virtually excluded and few places involved family

But in the past 12 months there has been a huge increase in the
number of boards that are chaired or co-chaired by service users or
their families, he says. “This is a very significant demonstration
of how to work on a multi-agency basis, with people with learning
difficulties and their carers taking a leading role and being
listened to.”

However, Greig says there is room for improvement generally in
learning difficulty services.

“Too many local authorities have interpreted Valuing People as an
issue just for social services. It isn’t,” he says. Services need
to work together and the Valuing People support team will be
working to get this message across.

Housing authorities have not made housing homes available for
service users in the quantity the support team wants, and progress
has been slow in the take-up of direct payments.

However, Greig warns that it would be wrong for people to interpret
the latest reports as saying services for people with learning
difficulties have not improved. Valuing People has injected “new
energy” into people working in the field, and there has been
“significant progress” in most issues covered by the initiative
over the past two years.

Robbins agrees, but is impatient that services have not improved a
lot more. “It’s not down to poor policy or attitudes, it’s about
having resources to bring about aspirations,” he says. “My
director, colleagues and I see commitment and passion there – it is
not a forgotten service.”

In east London last week, some of this commitment was evident when
the London boroughs of Redbridge and Waltham Forest, the Redbridge
primary care trust and the Waltham Forest primary care trust agreed
a five-year partnership for services for adults with learning

Their pooled budget will be about £30 million. Graham Smith,
cabinet member for social services at Waltham Forest council, says:
“We can cut out on any duplication in service between heath and
social services, ensuring benefits for users and that money is
spent more efficiently.”

The partnership hopes to provide a blueprint that could be adopted
by other local authorities in future. If successful, it could go
some way to finally raising the status of learning difficulty
services and ensuring this “poor relation” is not forgotten.

‘Breaking Point and Out of Sight, Out of Mind’

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