A glut of new initiatives within health, social services and education looks set to raise the profile of disability issues in general and to offer more support to disabled children in particular.
Following the Every Child Matters green paper, with its promises of improved financial and practical support for disabled children, came the National Service Framework for Children.
It sets a range of new standards against which services for disabled children and their families will be inspected. The Disability Discrimination Bill, which is progressing through parliament, would place a duty on public sector bodies “to promote disability equality”. And only in January the prime minister’s strategy unit published Improving the Life Chances of Disabled People, which includes chapters devoted to children and young people.(1)
Much of the impetus for this focus has come from figures showing that disability among children is growing at a far faster rate than among adults. Improved diagnosis, better survival rates and a growing incidence of complex disabilities, such as autism, have resulted in a 62 per cent increase over the past 30 years in the number of disabled children living in the UK. In contrast, adult disability has risen by just 22 per cent over the same period. There are now 750,000 disabled children in the UK. One in 20 under 16s is disabled.
Helen Wheatley, senior development officer at the Council for Disabled Children, says the recent focus on the needs of disabled children is welcome and overdue.
“For many years we have been campaigning for the recognition that the needs of disabled children are something separate from those of adults,” she says. “There are specific issues involving children, such as access to play and leisure activities, educational opportunities and the transition to adulthood.” In the past, these issues have received scant attention from general measures to improve disabled access and end discrimination, she claims.
“We’ve got the national service framework, Every Child Matters, the Disability Discrimination Bill and the strategy unit document all cross-referencing each other,” says Wheatley. “So we have key documents within health, education and social services all committing to the needs of disabled children. It’s a golden opportunity.”
The result for disabled children and their families could be more joined-up services that consider the needs of disabled people at every stage of implementation. For instance, enactment of the Disability Discrimination Bill would require all local authorities to ensure that none of the services they provide discriminate against disabled people. This would mean thinking about how services are delivered, says Wheatley, rather than simply reacting to problems as they arise.
She adds: “We are hoping that the bill will give local authorities the opportunity to think in the longer term about how they are accommodating the needs of disabled children in every service they provide.”
Wheatley also hopes that services will recognise the specific needs of disabled children at particular points in their lives. “The first key time is during the very early years, around the time of diagnosis,” she says. “This is when the family needs a lot of additional support.” The next important stage is during the transition to adulthood. “The period between 16 and 25 can be very difficult because social services that have been provided throughout childhood may suddenly stop and not be picked up by adult services.”
Indeed, the strategy unit’s report recognises the problem of the “cliff edge” experienced by many disabled teenagers when social services are suddenly cut off. It proposes allowing children’s and adult services to overlap so that the transition can be made gradually. Other proposals in the document include expanding the direct payments system to provide disabled people with individual budgets that could be taken as cash or services.
This move may reflect a growing realisation that the government’s efforts to reduce child poverty are doomed to failure unless measures are introduced to relieve the financial burden of disability. The average annual cost of bringing up a disabled child is three times greater than for one who is not. And 29 per cent of people with a disabled child in their household live under the poverty line.
Other measures proposed in the strategy unit’s document include:
Provision of sustainable, high quality, flexible, affordable and accessible child care.
Timely access to specialist equipment for disabled children and their families “when and where they need it”.
Provision of a key worker for all families with high needs to provide information, improve communication and co-ordinate multi-agency interventions.
Establishing a new Office for Disability Issues that will be responsible for coordinating government work on disability and ensuring that this fits with the wider equalities agenda.
The recommendation to provide key workers is welcomed by Francine Bates, chief executive of Contact a Family, a charity representing parents of disabled children.
She says: “We are particularly pleased the strategy unit has endorsed the views of many parents that what would most help them is to have a key worker to co-ordinate services across health, education and social care and offer practical advice and support.”
Jo Williams, chief executive of Mencap, also welcomes the report. However, she emphasises that the proposed strategy would require “radical change at a local level” if it were to be delivered.
“We welcome the recognition of the growing numbers of disabled children and many of these will have profound and multiple learning disabilities,” she says. “It is these children, and later these adults, who so often get inadequate support. It is crucial that if this report is to be fully implemented for all people with a disability, that resources are targeted towards this vulnerable group.”
Implementation is the key. All the fine words in the government’s various green papers, white papers, strategy documents and even the draft legislation will count for nothing if the proposed policies are not put into practice. It is a point made by children’s disability charities which, amid their enthusiasm for the proposals, remain realistic about what still has to be done.
“At the moment everything that’s in these documents is only on paper,” says Wheatley. “There is a lot of energy behind this and it is up to us to catch hold of that and really make sure that these proposals make an impact on the lives of disabled children and their families.” She says the Council for Disabled Children will support local authorities to ensure these policies are implemented. “But we’ve still got a long way to go.”
(1) Improving the Life Chances of Disabled People, prime minister’s strategy unit, January 2005