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Frances Rickford talks to Philippa Russell who helped win disabled children the right to an education and fought hard for a better quality of life for her own disabled son.

Philippa Russell doesn’t give the impression of someone about to bow out. On the contrary - as she prepares to retire from her position as director of the Council for Disabled Children (CDC) in November, her life looks anything but quiet. After nearly 30 years in the post Russell has an encyclopaedic knowledge of disabled children’s services and issues, so both in her role as a disability rights commissioner, and as a policy adviser to the CDC and the National Children’s Bureau where it is based, she will continue to contribute her formidable expertise.

The CDC was created in 1974 as the Voluntary Council for Handicapped Children. It was the result of a recommendation from Eileen Younghusband’s working party on children with special needs for an independent policy forum bringing together the voluntary sector, professional interest groups, statutory agencies, central and local government and organisations of and for parents and disabled people. "That was very unusual at the time. People said it wouldn’t work, that everybody would be jealous and would not work together. But we did work together on a whole range of issues. And I took the job on with great enthusiasm because I’d always felt services needed to work together."

Russell’s first hand experience as the mother of a disabled son gave her a passion for the project, as well as an expert knowledge of life at the coalface for disabled children and their families. It also gives her a perspective on how much things have changed since the mid-70s. "There are a lot of anxieties about how inclusion is going and it is very easy to forget that only 30 years ago many disabled children and had no right to education at all. I’ve got a disabled son and I was horrified to discover in the late 1960s that he was regarded as ineducable."

Russell became an active campaigner, and with other families involved with the learning difficulties charity Mencap persuaded government that their children should have the right to education. The 1970 Education of Handicapped Children Act was the result.

As director of the CDC the successful campaigning on behalf of disabled children and their families continued. Under the Education Act 1981, parents for the first time had a legal right to see the records of assessment of their children with special educational needs. The Council also played an important part in the campaign that finally stopped the admission of children with learning difficulties to long stay hospitals, and later in drafting the 1989 Children Act’s guidance on disabled children.

"We fought a very successful campaign to get disabled children into this piece of mainstream child care legislation. Before that they were seen really as the property of the health service."

But despite these victories, life for many disabled children and their families remains very tough, says Russell. Across the developed world there is a marked increase in the number of severely disabled children because more children are surviving with life-threatening conditions, low birth weight or neonatal trauma. And according to Russell, there is a feeling among many parents that although services are getting better, they receive less of them. "The policy is quite properly to support children in ordinary living environments, and there are some outstanding services. But it all depends on where you live.

"We have not properly thought through what we need to do to sustain a high quality of life for children with complex needs. Even if we rely heavily on families, as we do much more in the UK than elsewhere in Europe, what are our responsibilities to children who are going to grow up with very significant levels of disability? I wanted a good life for my son, and he’s been lucky. But it has been a constant battle. And I think many families feel like that."