Institutions deprive many disabled and older people of rights, yet
supported living is more cost effective. Why aren’t local authorities
acting on the evidence?
right to live in one’s own home, secure in the knowledge that you can
stay there as long as you pay the rent or mortgage and comply with a few
other basic requirements, is a cornerstone of our culture. It is
something most people take for granted.
Imagine, though, a situation where someone had the power to force you
to move – even though you’ve been paying your dues and abiding by all
the other unofficial rules – simply because they wanted someone else to
live there who would be an easier customer. Or what if that person could
decide who came in and out of your front door, or who you could and
could not have to stay overnight?
Welcome to the world of many disabled and older people. These are the
rules that apply if you are in receipt of registered residential care.
In a residential care home, people have no choice or control (pdf)
over who they live with, what happens in the home, or the nature and
type of support they receive. There is no security of tenure, people can
be moved around at the discretion of providers and residents do not
have rights to full welfare benefits.
A recent statement
by the Office of the United Nations High Commissioner for Human Rights
reveals a number problems with institutional care that interfere with
people’s human right to decide for themselves where they want to live
and what they want to do when they need support in daily living.
example, all care and support is provided by the accommodation
provider; people have minimal choice or control over how the support is
provided or who it is provided by, and if the person moved home they
would lose the care. How can people living in that position be confident
that providers will not abuse or misuse their position, or that they
will deliver a good service? Are we happy, as a society, to accept that
it is common practice for institutions to make these kinds of decisions
on behalf of individuals?
The last 25 years have seen a gradual move towards housing and
support models for disabled and older people that try to address this
lack of individual rights. The approach known as supported living gives
people housing rights through a landlord and a separate contract for
their support, which offers more certainty and greater control over
their lives. The aim was that people could choose to stay in their own
home and community, even if their care and support needs changed. If the
person moved home, they could take the support with them, or if the
person wanted to change the care their housing would not be affected.
There is clear evidence that large institutional services provide poorer outcomes and end up costing more overall
In the last couple of years, however, some local authority
commissioners have started to go backwards. This was most notably the
case in Rochdale, where a proposal that people from small supported living placements move back into residential care was withdrawn following legal action by families.
This is not happening because commissioners want to remove people’s
rights, but because they believe they can save money by returning them
to institutional care – and the loss of individual rights is an
unfortunate consequence. This belief is wrong. A recent review (pdf)
of the cost effectiveness of different models of housing, care and
support showed no evidence that residential care is more cost effective.
It might be cheaper to run in the short term, but cost effectiveness
also considers long term outcomes and there is clear evidence that large institutional services provide poorer outcomes and end up costing more overall.
A series of papers
have identified three reasons why commissioners and providers are
taking unsubstantiated decisions about the relative merits of
residential care and other approaches:
- A lack of investment in research and evidence gathering that would help more informed decision making.
- The absence of commonly accepted definitions for different housing
and support models. As a result, there is frequent misunderstanding
about issues such as supported living – as the legal challenge in
Rochdale demonstrated, and even the Department of Health acknowledges in
its own Care Act guidance.
- The limited opportunities for people who use services and their
families to get involved in decisions about what services are available
to them. Why are people recommended for a move into residential care
settings not provided with publicly funded, independent advocacy to help
them consider the potential impact on their rights?
It is not that residential care providers are wilfully denying people the rights they should have. The current regulations
effectively require them to withhold those rights. They state, among
other things, that a person cannot legally own or rent a place in a care
home – which automatically removes personal control. You have no legal
rights about what happens in the building. Some places will consult
residents and families, but many do not as there is no legal requirement
to do so. This allows other liberties to be undermined (as evidenced by
recent prosecutions) because residents have very little choice over the nature of their environment.
Some providers already try to work around this and accord people more
personal control by, for example, having a code of conduct for staff on
matters such as respecting personal space and autonomy. If this is
possible, it should be a legal right that everyone can insist upon, not a
privilege bestowed by some providers (and thus liable to be taken
In a paper setting out proposals for addressing these problems, the National Development Team for Inclusion
is calling on governments across the UK to undertake a fundamental
review of residential care. This should explore the extent to which
housing and other rights could be built into residential care.
If there are insurmountable legal obstacles to allowing greater
personal control within residential care settings, at least let us be
honest and open about it. Then we need to make it a requirement that
independent advocacy and clearer information is available so that
vulnerable people can make more informed decisions about the rights they
are – and are not – happy to surrender in return for care.