Let Her Tell Her Story

    CASE STUDY
    The names of the service user and her family  have
    been changed

    Situation: Juliette Barnes is 20 with profound
    physical disabilities – she has no mobility and cannot communicate
    verbally. She lives at home with her sister, Sonia, 19, and their
    mother, Margaret, 43. Following her divorce from the children’s
    father Margaret has had a succession of failed  relationships, for
    which she largely blames Juliette. Apart from the disabled
    children’s service, the family were also well known to social
    services because of concerns about poor parenting skills and
    because Sonia’s behavioural difficulties resulted in school
    expulsions and petty crime.
    Problem: Home carers who regularly attend to
    assist Juliette were concerned about the care being provided. They
    felt that Juliette’s needs were being neglected. It seemed that
    Margaret would not take advice about how to handle Juliette safely,
    and who had begun to show signs of increasing distress each time
    the carers turned up. They would find Juliette where they last left
    her, she would not have been assisted to the toilet and find meals
    that had been left had not been given to Juliette. There was also
    concern that Sonia seemed to be in charge of the house and was
    ordering her mother about and being verbally aggressive towards her
    and Juliette. They also suspected that Sonia’s friends were using
    the house to store stolen goods. When more support for Juliette is
    suggested both Margaret and Sonia angrily refuse saying that social
    services interfere enough as it is.

    PANEL RESPONSES

    Kathy Richardson
    There is much to offer Juliette and great improvements to
    be made in her quality of life. It is not acceptable for this young
    woman to have so little power or influence in so many crucial areas
    of her life; our first priority is to help her to gain some
    control.

    Her means of communication must be given urgent consideration.
    Working with a community speech and language therapist, we would
    explore the use of alternatives to verbal communication – such as
    software-based systems and infra-red controls.

    We would arrange for an advocate or support worker to be allocated
    to Juliette, whose role would be to ensure that her attempts at
    communication were given due attention by her family, carers and
    all service providers. Juliette would then be able to have
    discussions about her current and future living arrangements, and
    to make and communicate decisions regarding any changes that she
    wants.

    Once we have discovered a successful means for Juliette to make her
    needs and wishes known, we could ensure that the same technology
    was applied in order for her to be able to try out a powered
    wheelchair – and possibly environmental controls too.

    As well as the speech and language therapist and the occupational
    therapist being involved, we could explore the difficulties
    associated with her eating and drinking. There are products on the
    market which enable people with severe physical disabilities to eat
    and drink with greater independence (for example the “Neater
    Eater”) and these might be an option for Juliette. Whether or not
    this works for her, Juliette needs a highly structured care plan,
    which includes carers from outside the family assisting her to eat
    and drink.

    Within the care plan, it is essential that there is a detailed
    moving and handling plan and that everyone follows it. The risk of
    injury to Juliette and to anyone assisting her to move is critical
    within the current arrangements. It is quite possible that
    Margaret, like so many other parents of disabled children, has
    long-standing back injuries associated with the way she has been
    helping Juliette.

    Annette Whittingham
    It is apparent that because of the family’s background
    they find it difficult to work with or trust professionals. Any
    single parent of a disabled child in need of support from social
    services needs to be able to take time to build up relationships
    otherwise they could become overwhelmed and rush in to making
    judgements about the people trying to offer support and
    advice.

    The caseworker needs to see the situation from all sides and engage
    with the family members to build up trust while undertaking a
    systematic approach to the situation and responding swiftly and
    effectively to ensure Juliette’s safety and well-being. The worker
    would need to undertake a re-assessment of Juliette’s needs and
    level of risk, and offer separate carers’ assessments to Margaret
    and Sonia to establish their need for support. Not all carers are
    aware of all the services that are available to them or recognise
    themselves as carers who are entitled to help and support.

    Also, does the family have financial difficulties and require
    benefits advice? Poverty can affect family life and the skills
    needed in parenting. Have the difficulties arisen as a result of
    misunderstanding rather than poor parenting skills or a combination
    of both? Does Margaret fully understand Juliette’s care plan and
    moving and handling programme? Have day care and respite services
    been explained? This would remove some of the family’s pressures
    while providing an opportunity to monitor the situation.

    The case worker would need to find out from Juliette her needs and
    view of the situation and this might be possible using specialist
    communication equipment. How does Juliette communicate her wishes
    to her family and carers?

    Is Margaret’s permissiveness and inability to discipline Sonia a
    result of her self-perception and failed relationships and is
    Sonia’s home life contributing to the suggestion of her offending?
    A protection of vulnerable adults meeting would need to look at
    different ways of working with each member of the family and
    regular monitoring of the situation.

    A referral to the disability resource team for advice on mobility
    and communication products for Juliette may prove to be the key to
    the family beginning to accept the involvement of professional help
    other than social services.

    USER VIEW
    The major problem is that we don’t really know what
    Juliette is going through, or how she feels about her present
    situation, writes Simon Heng. 

    How does Juliette communicate at present? Do her relatives
    “translate” for her? If they do, and they are suspected of abuse or
    neglect, can we trust their “translation”? Is she able to read? Is
    she able to use any kind of communication device? 

    I’ve known a number of people who are unable to speak but who have
    managed to communicate effectively with a variety of tools. These
    include a picture board, which depicts icons which someone can use
    to indicate simple concepts, to a word board, which is literally
    what it says it is, a large board containing a grid filled with
    commonly used words and the alphabet. Communication aids go from
    this to special input devices attached to a voice synthesiser, such
    as Stephen Hawking uses. Many people have enough voluntary control
    over some part of their body to enable them to use devices like
    this. 

    The sooner attempts are made to help her develop a means of
    communication, the sooner she will be able to tell people how she
    is being treated and how she feels. 

    If Juliette were a child, she would be a candidate for the “at
    risk” register, with all the measures that offers. As far as I
    know, there is no such equivalent for vulnerable adults: maybe
    there should be. The recently introduced Protection of Vulnerable
    Adults scheme, as far as I understand it, can only identify paid
    care staff who have been implicated in abuse or neglect, meaning
    that people who are looked after by informal carers aren’t
    protected by this. Physically dependent upon other people, and
    unable to communicate effectively, even if she isn’t being
    deliberately abused, Juliette is entitled to the protection offered
    by policies devised in the wake of the Department of Health
    document No Secrets: Guidance on developing and implementing
    multi-agency policies and procedures to protect vulnerable adults
    from abuse.

    Published in 2000, No Secrets instructs local agencies to develop
    ways of protecting people like Juliette. By now, her local agencies
    should be well advanced in implementing their vulnerable adults’
    protection strategy, including information and training (or both)
    for front-line staff about how they should address suspected abuse
    or negligence. 

    Simon Heng is a regular Community Care columnist and a
    disabled service user

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