Disabled children and their families have been left behind in the drive to improve children's services. Now charities have put their hopes on a government review. Amy Taylor reports
The cross-cutting policy review on disabled children announced in the Budget is the first time the Treasury has focused on this group in 10 years.
The welcome move came as a result of lobbying by the Disabled Children's Group, which consists of Contact a Family, the Council for Disabled Children (CDC), Mencap and the Special Education Consortium.
The group has been arguing that while the Every Child Matters agenda has led to improvements to services for children, many disabled children and their families have to fight for support or do not receive it at all.
Francine Bates, chief executive of Contact a Family, hopes the review will highlight gaps in service provision, make recommendations on how to tackle them and provide resources to reduce the level of unmet need.
She says the review shows the government recognises that disabled children and their families haven't been receiving a fair deal. "The significant resources that are being pumped into children's services are not reaching disabled children," she says.
Every Child Matters pledges to provide joined-up services based on the needs of the child but for many disabled children and their families this is not happening, says Bates. There are still problems accessing services, such as speech therapy, and many families still have to attend unco-ordinated appointments with professionals.
Bates explains that the main reason behind the lack of services is because, until now, disabled children have been a low priority to central government, and this view filters down to councils who then do not commission enough services to go around.
Another issue is that the needs of disabled children and their families have changed over the years and services have not kept up.
"There's a big increase in the number of children with complex disabilities, including children with autism and children that have specific health needs, that might be dependent on technology.
As a result, more families need services but those services are not developing to respond to that need," she says.
The service most frequently requested by families is short breaks. But a 2003 survey by Mencap found that six out of 10 families with children with learning difficulties were getting no short-break service at all or one so minimal it didn't meet their needs.(1)
David Congdon, Mencap's head of campaigns and policy, says that more short-break services are urgently required. "Basically the only way you get a break is if you reach the stage where you are at breaking point and you say 'unless you do something I am walking out'," he says.
A Contact a Family study shows the effect the lack of services has on parents, with 76 per cent of respondents becoming stressed or depressed since having a disabled child and 72 per cent experiencing lack of sleep.(2)
Former chief economic adviser to the Treasury and now MP for Normanton, Ed Balls, recently decided to act on the problems facing families with disabled children after being alerted by Contact a Family. As well as lobbying with the charities for the Treasury review, he also launched a private members' bill (Disabled Children's Assessment and Services Bill) in February to try to improve support.
This would make it clear in law for the first time that councils must assess disabled children and provide them with services assessed as necessary. It would also give parents an explicit right to short breaks and respite care.
It is rare for private members' bills to become law but Balls believes his proposals may be taken up, saying he has detected sympathy among ministers.
Recognising the benefits of joint working for disabled children, some children's trusts have chosen to focus on this client group. A recent study by the CDC found that joint commissioning arrangements within children's trusts could bring about big improvements.(3)
Helen Wheatley, the CDC's principal officer, says that well performing trusts had created commissioning panels with representatives from services, such as health and social care, which pooled their budgets and worked together to bring money to the table rather than trying to get a different department to pay for a service.
"It avoids that whole thing about what constitutes health or social care," she says.
New initiatives being rolled out across councils, such as lead professionals and the common assessment framework, could also be beneficial to disabled children but for Congdon more resources are the key.
"All of those things are good but unless the system has enough funding all other proposals are a sticking plaster that won't bring about fundamental change," he concludes.
In the autumn, the charities are launching a campaign for better rights, entitled Every Disabled Child Matters, to try to ensure that disabled children are able to reach their full potential. If the
Treasury review leads to adequate support being provided and Balls' proposals become law the title may soon become a reality.
(1) Breaking Point, Mencap, 2003,
(2) Relationships Between Parents who have a Disabled Child, Contact a Family, 2003
(3) Pathways to Success, The Council for Disabled Children, 2005