What do these three people with learning difficulties have in
common? James Munroe* does not like his bedroom at the residential
home where he lives and is trying to struggle through the formal
complaints procedure. Helen Keinton* wants to have a baby but is
worried that if she does it will be taken away from her. Nelson
Johns* has met a girlfriend at a disco and wants to bring her to
his residential home to stay in his room but the staff where he
lives say they would rather he did not.
The answer is that they could all be helped by the Human Rights
Act 1998. Organisations now have a new duty to uphold the rights
scheduled in the act’s articles, such as the right to liberty and
safety, the right to respect for their privacy, family life and
One of the key aspects of the act is that it imposes positive
and negative duties to protect and uphold these rights. Some of the
rights in the articles are unqualified, that is they cannot be
compromised (such as the right to marry) and some can (the right to
private life). But any restrictions on human rights can only be
imposed using “proportionality”. For example, it might not be
proportional to lock all the doors in the house because one person
likes to wander, thereby stopping all residents enjoying the
Of course, in the real world there are many cases where there
may be a clash of rights between different people. For example, a
parent’s right to family life might clash with an adult daughter’s
right to a private life when she decides to move into her own flat.
Difficult decisions have to be made in circumstances like this and
any organisation involved in the decision-making process has to
consider the act carefully . But there are worrying indications
that many organisations are still not doing this four years after
the introduction of the act.
A recent Department of Health-funded research project (1) set
out to see what effect the act might have on the lives of people
with learning difficulties. It was felt that, because the act
regulates the actions of public authorities, and people with
learning difficulties tend to have a lot of day-to-day contact with
such organisations, it might be particularly relevant to them.
The research was carried out with the help of many people with
learning difficulties and two paid consultants with learning
difficulties. It also included the co-operation of a health trust,
a residential care provider, a day care provider, a national
charity (offering many different services) and a further education
Key areas of concern emerged from more than 700 questionnaires
and 50 extended interviews with staff who worked with people with
learning difficulties in these public authorities.
These included the fact that the courts have said that the
“development of personality in relationship with others” is a key
right granted by the act and that organisations have a positive
duty to support this. The research found that the lack of choice in
the everyday lives of people with learning difficulties was
undermining this right. For example, 71 per cent of staff agreed
that service users often did not have the opportunity to go out
when they wanted.
Sixty-three per cent of staff agreed that staff shortages meant
users were often unable to attend leisure activities. And only two
out of five staff believed that people with learning difficulties
had enough opportunities to make new friends.
The courts have stated that people with learning difficulties
should receive the same health care as everyone else. But the
report suggested that there was still significant discrimination
against them in this area. This was partly because of the lack of
knowledge about the particular needs of people with learning
difficulties, a view backed by 70 per cent of staff. More than half
said that this lack of knowledge meant that users often did not
receive the care they needed.
Bullying is a huge issue that was often raised in the research.
Although bullying by one resident of a house against another may be
seen as between two individuals and therefore not covered by the
act, this will not be the case when the organisation responsible
for their care knows about it (or should have known about it) and
has done nothing to safeguard that person.
Organisations may be able to protect themselves in this type of
situation by having adequate and accessible complaints procedures
in place. Unfortunately the research found that, even when
complaints procedures are in place, three-quarters of staff said
they were rarely used. Some organisations might take this very low
level of formal complaints as meaning there was nothing to complain
about, but 78 per cent of staff questioned considered that the most
significant reason was because users did not understand the
This highlights the importance of support in times of conflict
and disagreement. This was shown when 93 per cent of staff agreed
that all users should have access to independent advocates. But
only 27 per cent believed their organisation had an effective
So, will the act make a difference to the lives of people with
learning difficulties? The conclusion of the research is a
qualified “yes” because it is felt that the act:
- Gives people with learning difficulties clear and explicit
legal rights, which other people have taken for granted (for
example to get married and have children).
- Places significant new obligations on organisations who are
dealing with this client group to make a positive effort to protect
their rights and help them take up their rights as full
- Encourages organisations to place fairness and proportionality
at the centre of their decision-making processes thereby developing
a culture and ethos of human rights.
But the research also shows that there are continuing
difficulties in creating a “human rights culture”, for example
problems with implementation and low levels of awareness of the
legislation. It is felt that the creation of the new post of
director of equality and human rights for the NHS, together with
the announcement in the Queen’s Speech of the formation of the
Commission for Equality and Human Rights will go some way to
redressing these issues although of course “the devil remains in
the detail” of their powers.
* Names have been changed.
Patricia Finnegan has worked with people with learning
difficulties for more than 15 years including as an independent
advocate, evaluator of services, and speech and language therapist
at Bristol North Primary Care Trust. She has just completed a
three-year research project for the Department of
Stephen Clarke is a partner in Clarke Wilmott Solicitors
in Bristol. He is a solicitor with a long-standing interest in the
Human Rights Act 1998, litigation procedure, discrimination and
disadvantaged groups in society.
Human Rights Issues
Some questions to ask when you think there may be a Human Rights
- Is there a “public authority” involved?
- Which articles might be relevant?
- What rights do they grant?
- Are rights granted to more than one person?
- If so, do the rights clash?
- Can the rights be restricted under the act (it will tell you in
the article itself)?
- Are any restrictions “proportionate” and not “arbitrary”?
This article looks at the impact of the Human Rights Act 1998 on
people with learning difficulties and reports on the findings of a
major research project, which has just been completed for the
Department of Health. The research found that, although significant
duties have been placed on public authorities to uphold and protect
human rights, there remains a lack of awareness and problems with
implementation of the Human Rights Act.
1 P Finnegan, S Clarke, One Law for All, Values into Action,
2005. Tel 020 7729 5436 or e-mail: firstname.lastname@example.org
- The details of the Human Rights Act 1998 can be found on the
DCA website at www.dca.gov.uk
- Human rights case updates can be found at www.leighday.co.uk and www.1cor.com
- L Clements, J Read, Disabled people and European Human Rights,
The Policy Press, 2003
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