Read the Rights Act

    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
    home.

    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
    garden.

    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
    college.

    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
    process.

    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
    advocacy service.

    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
      citizens.
    • 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
    Health.

    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
    Act issue:

    • 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”?

    Abstract

    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.  

    References

    1 P Finnegan, S Clarke, One Law for All, Values into Action,
    2005. Tel 020 7729 5436 or e-mail: publications@viauk.org

    Further Information

    • 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

    Contact the Author

     E-mail Patricia Finnegan at pat.finnegan@btinternet.com
    or phone 0797 965 1958 E-mail Stephen Clarke at s.clarke@btinternet.com
    or phone 0787 674 0864

     

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