It is not often that campaigners on social issues find that their demands are largely met by government and sufficient resources are put in place. But the decision by ministers to ensure that local authorities provide short breaks for disabled children and their families appears to be just such a case, with the government being praised for its “generosity”.
The amendment to the Children and Young Persons Bill in the House of Lords, tabled by government minister Lord Adonis and president of Mencap Lord Rix, signals a major shift in the priority afforded families with disabled children. The Children Act 1989 gave local authorities the power to offer short breaks, now they will have a statutory duty to provide them.
But, while welcoming the government’s positive response to a vigorous lobby on the issue, the Every Disabled Child Matters Campaign (EDCM) says it and its supporters are “still calling for government to go further and make short breaks available as a right to families with the greatest need”.
Under its Aiming High for Disabled Children programme the government has provided £370m of ringfenced money so that local authorities can overhaul their often patchy and inadequate short break services between 2008-11. Currently, 21 local authorities are taking part in a pathfinder programme to develop innovative ways of shaping services, not just to provide respite for parents but also fulfilling activities for disabled children.
These councils are working with their local primary care trusts (PCTs) who have been given an unspecified, and non-ringfenced amount through increases in their baseline funding. They were reminded last December by government ministers that this money was to provide short breaks.
But amid the euphoria over the government’s bold steps, there is a general recognition among campaigners and local authorities that the bar had been set very low when it came to provision of short breaks. The EDCM found that only one in 13 families with disabled children received any support service.
EDCM campaign manager Steve Broach (pictured)says that when it was launched in 2006 the plight of disabled children and their families was “far too low down the government and media agenda”. This was reinforced by evidence given to parliamentary hearings for the Aiming High for Disabled Children review in which families spoke frankly of the deficiencies and insisted short breaks should be given the highest priority. Readers of Community Care reflected this growing concern when they ranked the need for choice, independence and support for disabled children fourth in the magazine’s mission statement last year.
Jill Harrison, director of external affairs at Contact a Family, is not surprised by these findings. Research by the charity among families with disabled children found short breaks described as a lifeline, a marriage saver and essential in ensuring parents have quality time to do activities with non-disabled siblings.
Broach says there have been concerns not just about the volume of short breaks provided but also the quality, with too many cases of parents being offered what amounts to “warehousing”, with no stimulating or fulfilling activities for their children.
Alison Cathles, children and young people with disabilities project manager at Gloucestershire Council, welcomes the £718,000 extra the authority will receive this year as a pathfinder, but says: “Support for disabled children has been marginalised and underfunded for a long time so they have a long way to go to ensure disabled children catch up with support given to their non-disabled peers.”
Alison Shield, who leads the Nottinghamshire Council pathfinder, says there have been wide disparities in the quality of provision, with some families in the county receiving a “gold standard” service, while others were getting little support. She has been conducting a review of services to reconfigure them, increase their range and ensure the involvement of leisure, play and sports services so disabled children have “an enriching experience”.
“What families often want is fairly short breaks, in terms of hours, not days or weeks. They just want somewhere safe where they can leave their children while they go to a parents’ evening, a wedding or just have a meal out,” she says.
As a result of the review, the authority can provide more community-based resources, such as sitter services, across a wider geographical area as well as high-cost residential places for children who need them.
She says that, increasingly, parents of disabled children have preferred to use foster homes and the council has successfully developed a contract care scheme where salaried foster carers provide overnight stays for children with profound disabilites or challenging behaviour.
The council is hosting a conference to fully launch the pathfinder where organisations and parents will debate what initiatives can be developed with the £5.9m in revenue and £1.2m in capital provided this year by the government. Shield believes some could be spent on adapting foster carers’ houses so they can accommodate wheelchairs and hoists.
A review of short breaks was also undertaken in Gloucestershire and resulted in a short breaks commissioning group with equal representation from parents and council officials. It is exploring ways in which children with complex needs can take part in some sports and creative arts activities. “A lot of providers are enthusiastic about getting involved and we are providing them with some training,” Cathles says. Too often children with severe disabilities are seen purely in terms of their care and medical needs and “people forget to find out what they are really interested in”, she adds.
At a strategic level, however, it is the way the needs of disabled children and their families have been embedded in the NHS operating framework and the Children’s Plan which has most heartened campaigners. How both local authorities and PCTs shape up will now be measured through performance indicators.
At Bradford Council Anne Mackay’s job title – divisional services manager for disabilities and health – encapsulates the integrated approach being developed between local authorities and PCTs on the issue of disabled children’s services. She says the council is working closely with the PCT to develop a “robust joint commissioning process”. Her PCT colleague, Chris Jewesbury, who is head of commissioning for the child and adult mental health service, says that the involvement of health is vital in developing an integrated outlook and that short breaks meet health needs.
It has been a long and, often exasperating, journey for families with disabled children seeking short breaks. The government’s response has, according to Broach, been incredible. It is now up to local authorities and PCTs to ensure that this commitment is translated into high quality short breaks for all disabled children and their families.