A winner of battles

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.”