By promoting the independence of disabled children, local authorities can truly invest in the future. For example, adapting existing housing and supplying appropriate equipment, or creating housing for life, can reduce demand for residential care upon reaching adulthood. Also, it’s important that children are supported to access mainstream, universal services; special provision should be the exception rather than the rule.
All local authorities are required to set up registers of disabled children in their area, which are used to plan services and to send relevant information to young people and their parents and carers.
In Durham, the register, or the Children’s Network as they call it, was first set up in 1995 and, as appeared to be the norm nationally, was co-ordinated by a manager in children’s services – as a tag-on to their existing job. Inevitably, this meant it became just another task among many competing for time and resources.
“At this time a more traditional respite centre for disabled children was closing, and so it was important to have someone who was able to inform parents and carers about inclusive leisure opportunities and supporting organisations,” says Rob Watson, project worker for the Children’s Network and a former head teacher of a special needs school. “Although part-time, importantly the post was permanent – and so it wasn’t a ‘here today, gone tomorrow’ project. I could dedicate my time exclusively to the project.”
All those registered are sent a quarterly fun-designed, full colour magazine, For You and Me, detailing events, competitions, information and human interest stories. “We hope to produce two versions – one for younger children and families and one for older children. It’s very difficult to produce a magazine that will meet the needs of children from a young age to 18, while recognising that the biggest group registered with us are children with learning difficulties,” says Watson.
Durham has 650 families registered, and each child and young person is sent a birthday card. “This allows us to include the annual renewal of registration, as we need to check that people want to stay on the register and that our details are still up to date. Our social services information database allows us to do this automatically and to have daily read-outs of numbers and types of disability,” adds Watson.
Watson organises two events a year: one for parents and carers and those who work with disabled children. This includes a keynote speaker and workshops based around a theme, such as “access to leisure”. The second is an annual fun day for children, their families and friends.
The Children’s Network forum meets quarterly and is made up of parents and carers and representatives from social services, public information team, education, health and voluntary organisations. “It’s a kind of steering group. We have up to 25 people come to each meeting,” says Watson. The forum decides on the themes for the year’s events and comes up with suggestions to help make disabled children’s lives more fulfilling.
One such suggestion resulted in the publication of The Find-It Guide, which provides details on, for example, telephone helplines, education and careers, funding and welfare rights, and carers’ support. However, the biggest section is leisure. This lists 40 mainstream groups – and covers basic questions such as age groups catered for, where they meet, access, parking, whether they are willing to have an adult or supporter for a young person come along, costs, and contact details.
As for the future, Watson is sensibly looking with colleagues in health and education at introducing parent-held files. “The number of professionals that a young person with disabilities is involved with means that parents and carers have to tell the same story over and over again. A parent-held file should hopefully end that,” he says.
However, from the feedback received, it seems that parents and carers are more than happy to talk repeatedly about the success and value of the Children’s Network.
Scheme: Children’s Network – the register of disabled children.
Inspiration: To make better use of the opportunity to inform children, parents and carers.
Staff: Part-time project worker.
Cost: About £25,000 a year – including all publications.