Change the focus

    If disabled parents get the right support to do the job, their
    children can thrive. Richard Olsen and Harriet Clarke report the
    findings of their recent study.

    Disabled parents face a wide range of largely unrecognised
    difficulties which can prevent their children from achieving their
    full potential if they do not get the right support at the right
    time. New research exploring the experiences of disabled parents
    and their children has raised a wide range of issues which put
    these families at risk of social exclusion including the lack of
    employment, housing, transport and leisure opportunities.

    It also throws new light on why children of disabled parents may
    be disadvantaged educationally, and has also emphasised how hard
    disabled parents struggle to prevent their children from becoming
    “young carers”. The study also looks at how parenting for disabled
    people changes as children grow up, impairments change and develop,
    and as they face other challenges in their lives such as
    unemployment, divorce, and so on.

    Among the barriers that disabled people face in carrying out
    their parental responsibilities are difficulties in accessing
    schools, in getting information about services in an accessible
    format, in using leisure facilities that other parents are able to
    use, and the stigma and prejudice they can face from professionals
    and the public.

    Disabled parents need more support, but this should be provided
    in a way that recognises that they do not have “special needs” but
    would like equal access to parenting support. Direct payments – the
    scheme in which disabled people are given cash rather than a
    service – is one way of enabling disabled parents to have control
    over the way support is provided.

    It is dangerous to assume that negative outcomes for children in
    these families are the result of parents’ impairments.
    Instead, when parents did report difficulties with parenting, they
    generally saw the problem as involving the physical, social and
    economic environment around them, rather than their
    impairments.

    A major barrier to effective parenting for many disabled parents
    is getting around their own home. As well as Cath’s story
    (see box) several other parents reported sleeping on the sofa for
    months, or even years, while their impairments became more severe
    and their homes became more inaccessible. As Cath’s
    experience shows, it is important to understand that if the school
    attendance of some children of disabled parents is poor, it may be
    because of parents are not getting the support necessary for them
    to carry out their parental role. Seeing the problem this way
    focuses attention on providing the parent with support, rather than
    assuming that the child is the one primarily in need of support
    (for instance, from a young carer project).

    An example of the needs of children being best met by providing
    appropriate support to their parents is the child of visually
    impaired parents who may be falling behind with their reading. In
    these instances, it may be more appropriate to provide parents with
    accessible reading books (for instance, books with written text
    accompanied by Braille) so that they can read with their children,
    rather than, perhaps, extra lessons in a school setting. Parents
    also reported the widespread assumption that disabled people simply
    do not have children and how this is reflected in the fact that
    several motel chains have accessible rooms and family rooms, but
    not accessible family rooms.

    The research shows that people who come into contact with
    children who are seen as struggling in some sense, or who work with
    families at risk of social

    exclusion, ought to be aware of the possibility that parents
    face additional barriers as disabled people in fulfilling their
    parental role.

    The important thing in these cases is to offer support in ways
    which strengthen and underpin the parent, and not jump to the
    conclusion that the interests of the child and the parent are
    different and that services should be looking to replace the parent
    and his or her role (as has been the case with some young carer
    provision).

    Children will have their needs best met when the hurdles that
    their parents face are lowered. An awareness of how being disabled
    can make parenting more difficult is important for all those
    working in the social welfare landscape, whether from
    children’s or adults’ services, the statutory or
    voluntary sectors, from health, social care, housing, leisure and
    so on.

    1 R Olsen, H Clark,
    Parenting and Disability: Disabled Parents’ Experiences of
    Raising Children
    , The Policy Press, to be published in
    May

    Richard Olsen is research fellow, Nuffield Community
    Care Studies Unit, University of Leicester. Harriet Clarke is a
    lecturer, Department of Social Policy and Social Work, University
    of Birmingham.

    Cath is a single parent living in council
    housing…

    … she has four children and suffers from the debilitating
    condition chronic fatigue syndrome and depression. The upstairs of
    her house is inaccessible to her because she cannot climb stairs
    and has no stair-lift. In response, she has put her own bedroom in
    the living room. She talked about some of the difficulties the
    inaccessibility of her house had caused, including her inability to
    get upstairs to supervise her children waking up, getting washed
    and ready for school. This meant that they occasionally missed
    school. She has been waiting for over a year for adaptations to be
    carried out which would enable her to use the whole house. One of
    her children has taken on more and more responsibility for his
    younger siblings and he has been referred to the local young carer
    project.

    Lisa has multiple sclerosis…

    … and is married to Mark. Mark describes himself as
    non-disabled but does have health problems which periodically make
    it difficult for him to do housework and to go out with the
    children. They have a 13-year-old daughter with learning
    difficulties and a 15-year-old daughter who is not disabled. When
    their children were younger, they

    managed to get by without any outside help, but as their
    disabled daughter reached puberty, it became increasingly
    inappropriate for Mark to provide personal care to her. He said:
    “What do you do when she doesn’t want you to change her
    sanitary towel? If you ignore her saying ‘no’ it could
    easily be seen as abuse. If you leave it alone, it could be seen as
    neglect.”

    Their older daughter had therefore begun to take on
    inappropriate caring roles, and Lisa and Mark wanted direct
    payments in order to make sure their daughters’ needs were
    met while not putting other members of the family in inappropriate
    caring roles, and to ensure that Lisa had the support to enable her
    to carry on fulfilling her role as her children’s mother (in
    going out with the children, for instance).

    About the research

    The research was carried out at the Universities of Leicester
    and Birmingham and was based on interviews with parents and
    children in around 80 families in which one or both parents had
    physical, sensory or mental health impairments.

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