Behind the headlines

Our regular panel comments on a topic in the news.

It is more than a decade since the Law Commission recommended
changes in the law that states when, and in what circumstances,
someone can step in to take decisions on behalf of an adult with
mental incapacity. Government proposals for legal reform were set
out in 1999, but the promised legislative changes have yet to be
made. In the meantime, the government has settled for issuing draft
guidance, which has split the learning difficulties community in
two, with user-run organisation People First saying it gives too
much power to carers and professionals, while Mencap claims that,
on the contrary, it will not take users’ rights away. People First
would like to see more support for people with learning
difficulties to take their own decisions, including encouraging
self-advocacy. It says the guidance is inaccessible to people with
learning difficulties, for which the Lord Chancellor’s Department
blames lack of time and money. Mencap says there should be a legal
framework to enable others to take “substitute” decisions on behalf
of people with dementia or severe learning difficulties.

Julia Ross, executive director for health and social care,
London Borough of Barking and Dagenham

“Whenever will we learn? Most people are very capable of making
their own decisions with the right support. Different people at
different ages and in different circumstances need more or less
support. It’s as simple as that, and not acceptable any longer for
any public sector body to blame lack of time or money for treating
any citizen less equally.”

Felicity Collier, chief executive, British Agencies for Adoption
and Fostering

“We should never underestimate the capacity of anybody to make
their views known about issues that will affect their lives, so we
should never take away anybody’s rights in this regard. We have all
been guilty through impatience or discriminatory views of people
with learning difficulties to fail to respect the fact that
whatever limitations they may have in understanding or
communicating what they feel, they have a right to be heard.
Advocacy schemes have provided powerful evidence of the extent to
which people with learning difficulties can understand what is
being discussed. We have a way to go in properly implementing these
obligations but it is something that we must not fail to do.

Martin Green, chief executive, Counsel and Care for the
Elderly

“The issue of how you establish people’s capacity to make
decisions affecting their lives is a very complex area and will
inevitably lead to controversy. I welcome the moves to clarify and
improve the process, but there are grey areas. The rules should be
weighted in favour of the individual and every effort must be made
to enable people with learning difficulties to make decisions that
affect them.”

Bob Hudson, principal research fellow, Nuffield Institute for
Health, University of Leeds

“If the long-established precepts of ‘an ordinary life’ are to
have real meaning, then this must include the rights of people with
learning difficulties to be treated within the law in the same way
as other citizens. Of course, there may come a point where people
cannot make their own decisions properly, but this should be a
final step when all other avenues of communication and support have
been exhausted. The Lord Chancellor’s Department is not setting the
best example in these respects.”

Bill Badham, programme manager, Children’s Society

“All people, regardless of impairment, are able and should have
a right to participate in the matters that concern them. So what’s
the fuss? A legal framework might be good news to stop unwarranted
intrusion. To take a different example, parents, of course, have a
legal responsibility for their children, and carers and
professionals must take account of children’s best interests, their
views and wishes. The problem is that this takes will and skill,
not more legislative power for the powerful.”