In the 2006 parliamentary hearings on services for disabled children, short breaks from caring were identified as the highest priority service for families. They reported getting no breaks at all from caring, or being offered breaks amounting to little more than ‘warehousing’ their disabled children.
Nationally, Mencap reported in 2006 that one-third of families with disabled children receiving short breaks had seen a reduction in the level of short breaks during the previous 12 months. And in this context of insufficient and inappropriate services, it is no wonder that 8 in 10 families told Mencap that they were at or close to breaking point.
This is why the Every Disabled Child Matters (EDCM) campaign has consistently highlighted the need for both funding and legal changes to improve the quality and quantity of short breaks that families with disabled children receive. We are delighted that the campaigning efforts of our 29,000 supporters, including the Community Care readers who voted for disabled children as one of the magazine’s top priority issues, have paid off, with government action in both these areas.
The £370m from the Aiming High for Disabled Children programme for improving short breaks between 2008-11 is a much-needed funding boost for local authorities. This must be matched by commitments from primary care trusts, who also have substantial new funding to improve services for disabled children and children with palliative care needs. In the new devolved NHS, it will be for each PCT to choose how much funding to allocate to this service area, but they should bear in mind that the NHS operating framework includes disabled children as one of just four local priority groups.
The short break funding will be at its height in 2011, when all local authorities will be receiving millions of pounds additional to their current budgets to improve short break services. This is why it makes sense for government to introduce the new duty on local authorities to provide short breaks, created through an amendment by Lord Adonis and Lord Rix to the Children and Young Persons’ Bill, at exactly this time. Ministers have stated that the amendment should ensure that local authorities will continue to provide at least the same level of short break care in 2012 and 2013 as in 2011. EDCM shares this ambition – and will be lobbying to make sure that the next spending review continues to deliver the funding which will be needed to make this happen.
With substantial funding and a firm new legal basis, short breaks must no longer be the ‘cinderella service’ of any children’s services department. Instead, short breaks must be seen as an integral part of every local area’s planning for disabled children and their families. While emergency respite care will always be needed, the future lies in planned, positive and imaginative short breaks that are designed to meet the needs and aspirations of each and every disabled child, while giving their parent a well-earned break.