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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