Key considerations

The government white paper on learning difficulties promises
that service users have more choice about where they live, but are
local authorities ready for the challenge? Sarah Wellard looks at
existing provision and how services may develop.

For most young people, moving away from the family home is part
of growing up. But for young people with a severe learning
difficulty it is an option that is rarely open to them.

Around 60 per cent of people with a severe learning difficulty
live with their parents. All too often, people only get moved into
independent accommodation because a crisis has arisen. Hazel
Morgan, head of the Foundation for People with Learning
Disabilities, says: “Families want to plan for the future but
there’s invariably a waiting list. Often the waiting list is
closed. Sometimes people are not moved until a parent dies. It’s
absolutely devastating to lose your parents and your home and be
moved into an alien environment.”

So the commitment in the new white paper on learning
difficulties to give people greater control and choice over where
they live is a major step forward.¹ Maurice Harker,
housing consultant and adviser to the charity Housing Options,
says: “Until now housing has not really featured in Department of
Health thinking. At the moment there isn’t any choice. It’s about
fitting people into services.”

The white paper acknowledges that conservatism has dominated
housing options for people with learning difficulties, and that
professionals have generally been deciding what is best and
expecting people to accept what they are given. It says residential
care should not be the only option, but that having your own
tenancy or even owning your own home should be possibilities. At
the moment, nearly four out five adults with a severe learning
difficulty who do not live at home are in residential care.

In the North West, however, authorities are ahead of the game in
trying out alternatives to residential care. Over the past decade,
rather than placing people from long-stay hospitals in large
community-based institutions as has happened elsewhere in the
country, departments opted for the district services model, with
people living in small community houses with around two or three
others. In Salford, 70 per cent of people with learning
difficulties who are not living at home are in supported
accommodation. Most have their own tenancies with a housing
association or the council.

Supported living offers a number of advantages over residential
care. For example, if someone is living in a residential care home
and the support is not what they need, the person will probably be
moved. But if they have their own tenancy with support provided
separately, the support provider can be changed.

People also have a greater control over their income. Residents
in care homes only get £15 a week pocket money, plus any
mobility allowance entitlement, as most of their income support is
taken as a contribution to fees. But people with their own
tenancies end up with £100 a week in their pocket. Reg
Higgins, learning difficulties team manager in Salford, says: “It’s
a complete anomaly. Why choose residential care when you can have
more rights as a tenant and more money to spend as you wish?”

There are also financial advantages for councils, as Higgins
explains. “Three individuals living together in a registered
residential care home each cost the department between £300
and £900 a week minus their income support. Next door there
may be people who are tenants and can claim housing benefit. Their
support is provided separately, with part of the cost met under the
Supporting People grant and the Independent Living Fund.”

Both Supporting People and the Independent Living Fund budgets
are administered centrally, and have not yet been delegated to
local authorities to manage.

Salford tries to offer people the option of living on their own.
Higgins says: “Most people are living in groups of three or four.
But it is not right for everybody. Some people want their own front
door. If people can see what options are available they can make an
informed choice.”

Surprisingly, it isn’t necessarily more expensive for someone to
live alone than to live in shared or residential accommodation. In
one case 24-hour care is provided to a young man whose challenging
behaviour makes it difficult for him to live with others. Three
other people with lower support needs have tenancies in the same
block, and can access the support when they want it. Higgins
explains: “In this case it actually works out cheaper. The three
young men need the reassurance that emotional support is available.
Otherwise they would probably have taken up three beds with 24-hour
care.”

Harker downplays the role of financial incentives in encouraging
councils to establish supported living projects. He says: “It’s the
direction services ought to be moving in and follows the logic of
the in the Community Care Act. People should be able to get help
from the appropriate service provider and not be tied in with care
homes to receive the service.”

But James Churchill, chief executive of the Association for
Residential Care, believes the desire to cut costs is a significant
factor in the expansion of supported living. He says: “It’s quite
clear that the next 12 months will see a big increase in people
being moved out of registered settings in order to catch the
supporting people tide. What started out as a good idea for service
users risks turning into a disaster if councils see it as a way of
saving money. If it is done well, it’s wonderful. But if it’s done
badly and they don’t put in the right support systems, the outcomes
for service users are pretty dire.”

Anomalies arise where care home owners convert their homes into
sub-divided units and give residents their own tenancies. The
property is deregistered and residents become eligible for the
Supporting People grant and housing benefit. As householders, they
may be more vulnerable to unscrupulous care providers operating
away from the scrutiny of inspection.

Churchill says: “I’m anxious that we are putting people into a
new style of service where our ability to monitor quality is not
yet proven. We don’t really know what is happening when domiciliary
care providers are going into someone’s home. It is pot luck
whether they get visited.”

Another dilemma for departments trying to introduce more
progressive forms of service is that users and their relatives are
often comfortable with what they know and resistant to change. The
closure of long-stay hospitals has been opposed in some parts of
the country. For example, in Surrey, the closure of Orchard Hill
hospital in Carshalton has been postponed following court action
last year by relatives of residents worried about the suitability
of community services.

Similar concerns may arise when a council tries to move people
into supported living. And after all, if an older person has been
living in a residential home for 10 years or more it seems hardly
fair to uproot them. According to care providers and campaigners
for people with learning difficulties, there have been a number of
cases of residents being moved out of care homes against their
wishes. Jean Collins, director of Values into Action, believes the
problem is widespread. She says: “It happens all the time. Everyone
likes to think they know what’s best. Any change ought to be based
on what the person wants out of life. Ultimately it must be the
decision of the person themselves.”

People need time to make a decision about where they will live.
Collins says: “If you’re suddenly presented with something you’ve
never thought about, the gut reaction is to say no. People need a
chance to find out about what is being offered and how they will
supported.”

Aside from concerns about how new models are implemented,
everyone supports the commitment in the white paper to extending
housing choice for people with learning difficulties. But experts
question whether the government has really taken on board the scale
of the shortfall in provision and the additional resources that
will be required to meet it.

Richard Kramer, head of campaigns at Mencap, says that an
additional 6,000 places a year are needed if the right to choose
where you live is extended to everyone over 25. So far there is no
indication that the government is prepared to find the extra
£180 million that this would cost. The white paper says only
that priority should be given to people living with carers aged 70
or over. Hardly a radical gesture. Many of these people are in
their 40s and 50s – late in life to adjust to living away from
home.

Kramer says: “There needs to be a strategy for tackling the
shortfall. Everyone over 25 should have a choice.”

¹ DoH, Valuing People, The Stationery Office,
2001

What the white paper says

– Councils will be expected to offer people a genuine
opportunity to choose between different housing and support options
including small-scale ordinary housing.

– Housing and social services departments need to work together
to expand housing and support options for people with learning
difficulties. New guidance to be issued later this year.

– People still living in long-stay hospitals should be enabled
to move to more appropriate accommodation by 2004.

– Planning ahead for people living with older carers to move to
more independent living to be prioritised.

– New Learning Disability Partnerships to ensure people have
access to housing information, advice and advocacy.