Waving not drowning

Should having a highly dependent child prevent you working? Janet Mearns, network co-ordinator of the Children with Disabilities Project, says no.

Disabled children's parents, like others, want to work. Work brings in an income, confers an identity, enables you to meet people and improves your skills. This was recognised by Parents At Work, a working parents' support group. Waving Not Drowning is a project supporting working parents of disabled children. Disabled children are more likely than others to live in one-parent families and in poverty. The cost of looking after a disabled child is greater than for a non-disabled child. Caring responsibilities extend far into the future when you know your child is never going to be independent. Medical progress means that many babies who would not have lived even twenty years ago are growing up, often with severe multiple disabilities.

As network co-ordinator of the project I hear mothers of disabled children telling me that they find themselves in the same position other women were in a generation ago. No one expects them to go to work. Childcare is not available or the childminder or nursery demands an extra fee. Social workers and healthcare workers who inevitably become part of their lives assume a parent -- mother -- is at home or poised ready to take the child for check ups in the middle of the working week.

To support parents of disabled children who work or want to work I run a helpline. Some problems we can sort out, but I could not see a solution for the mother who wanted to return to part-time health visiting. Her low wage would need supplementing by her Invalid Care Allowance -- which she could continue to receive if she deducted childcare costs from her wages, as she was entitled to do if she used registered childcare. Her own specially adapted home was best for her daughter with cerebral palsy, but there is no mechanism for registering carers in your own home!

The Waving Not Drowning newsletter goes free to over 800 parents of children with disabilities and another 300 professionals. The enthusiastic feedback I get from the parents and those who came to our oversubscribed conference last year shows that support for working parents of children with disabilities is sorely needed and is not being addressed elsewhere.

To get a copy of the networking directory and other material, contact Parents At Work, 45 Beech Street, London EC2Y 8AD. Tel: 0171-628 3565 Fax: 0171-628 3591.

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