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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.