Child Health Special Report: Raise the bar for disabled children

Life for families with disabled children is a constant struggle, with support in areas such as short breaks and childcare woefully lacking. The government has recognised the problem and in May 2007 announced its Aiming High for Disabled Children agenda, a £430m package of measures to improve services for families. This includes £370m for respite care, £35m for childcare, £19m for transition support and £5m to develop parent forums.

The reaction from the children's sector has been largely positive. Srabani Sen, chief executive of charity Contact A Family and a board member of the Every Disabled Child Matters campaign group, says: "What this does is not only give funding but shows a political will to improve services."

However, details around funding are still a concern. Primary care trust (PCT) funding and money for short breaks has already been made available, but many councils are still in the dark as to how money for childcare, transition support and parent forums will help them.

As PCT funding for Aiming High has not been ring fenced, there are no accurate figures to show how much they have received. The child health strategy should iron that out. Sen understands this will show how much PCTs have been allocated.

Advice on short breaks has been issued, but councils and trusts are still awaiting guidance on childcare, parent forums and support for transition into adulthood.

A Department for Children, Schools and Families spokeswoman says that funding is being handed out in stages over the next three years. Here, CYP Now looks at how different partners in Leicester are managing to implement Aiming High for Disabled Children.

THE HEALTH PERSPECTIVE

"It's been a life saver and transformed families' lives," says Diana Nurse Service manager Dorothy Gillespie about the short break funding that has been made available through Aiming High for Disabled Children.

The service is run by the PCT and has been able to extend its reach to families with disabled children up to the age of 18 while before it could only offer its services to those up to the age of 12.

The 64-strong Diana Nurse team not only offers short breaks but a wide range of palliative care and day-to-day support. However, the service is only available to those children in need of nursing care, often with complex needs or life-threatening conditions.

Room for improvement

Gillespie concedes that there is still a gap in care for many families with disabled children who do not have such complex needs. "There is more that can be done to offer respite care to all families with disabled children," she says. "But I am optimistic. The Aiming High agenda has focused all our minds on working together in partnership and I have high hopes that as more money comes in respite care will be available to many more families."

Aiming High's emphasis on short breaks has also given all partners a better perspective on respite care. "Now people are seeing it not just about having a day away but about all sorts of things," she says.

She has mixed feelings about the lack of guidance from central government. "On the one hand it is good that the government is not being prescriptive. Having said that, it would be good to have some reassurance that we are on the right track," she says.

THE VOLUNTARY SECTOR

"Sometimes it's the simple things that can make the biggest difference to families," says Anne Payne, disability manager at the Red Cross's Disabled Family Support Centre.

This summer the centre has been consulting with some of the city's hardest-to-reach families who have a disabled child to find out how services can improve.

Those interviewed were families who could not attend the recent activity and consultation day held in the city but are among those most in need of support.

Consulting families

"So far their feedback has shown us that support with everyday, simple things is a priority. Things like access to out-of-school clubs and good transport," she says.

Already the centre has helped a group of 15 parents with a disabled child to set up an empowerment group offering an advocacy service and advice to parents.

"This group is really successful at helping families, but is quite small. It would be great to roll this model out across the whole city. Aiming High could really help achieve this through extra funding."

However, as with her colleagues on the council Payne is concerned that firm details about funding and guidance have not yet emerged. "It certainly makes long-term planning difficult," she says.

Despite this lack of detail she says: "Aiming High has given us a renewed focus and shown that nothing can be achieved unless the voluntary sector, councils, parents, children and the PCT work together," she adds.

THE COUNCIL PERSPECTIVE

Sue North, Leicester City Council's disabled children service manager, is becoming impatient.

"We are really committed to Aiming High, but still have not received guidance or details about much of the funding from central government," she says.

While £60,000 to bolster short break funding has arrived, she does not know when or how much will be coming for other parts of the Aiming High agenda. "All we can do is put the building blocks in place and wait, but it is a real challenge. We need some details," she says.

Lack of guidance is also frustrating. "I'm sure we are on the right track with planning our services but it would be good to get some national guidance and support."

Campaign group Every Disabled Child Matters certainly thinks Leicester is on the right track, citing its work so far as an example of good practice.

Work includes a revamp of the Disabled Children and Young People's Programme Board which helps plan services. It now includes senior staff in transport, leisure and regeneration as well as health, council, charities and parents of disabled children.

Consultation with disabled children and families has also been a priority. The council organised a fun day in August to hand out questionnaires, which attracted 400 people.

"It was a really successful day. The event also showed us the need to have more activities like this for disabled children as well as giving us valuable information about what local families really want from us," she says.

The results of the consultation event are now being collated and will be used by North and her colleagues to shape services and decide how best to spend any further funding from central Government.

THE PARENT'S PERSPECTIVE

"Everything is a battle," says Debra Murray, whose 15-year-old daughter Paige has cerebral palsy. "Whether it is getting something done at school or having a health check, it is really hard work making sure even the simplest things get done."

Lack of communication between organisations is a concern, especially involving the secondary school Paige attends, health trusts and social services.

"Something like having a physiotherapy session is really difficult to arrange because the health services and school do not talk to each other," she says.

Such problems prompted Murray to join the empowerment group set up by the Red Cross Family Support Centre, to help others navigate their way through the system.

While she has heard of the government's Aiming High for Disabled Children agenda, she says it has yet to make an impact.

"Have services improved? I'd say not but there is a feeling that things are going to get better. That optimism wasn't there before."

One area where she hopes to see improvement is in transition services. At 15, Paige is between services. "There is support for adults, for younger children and the elderly but not much for teenagers," explains Murray.

More support for siblings of disabled children is also needed. Murray has been trying to set up a support group for such children, including Paige's twin sister Jade.

She says: "I've been trying to do this since Paige and Jade were four-years-old. It has been really hard to get the organisation and training sorted. I hope that this new government policy will help with that."