Together for Short Lives has welcomed the government’s decision to allocate £30 million for additional short breaks for respite for families with disabled children in England. The charity is calling on the local authorities to use the funding to make sure seriously ill children with the most complex disabilities – and their families – can now access the breaks they need.
The Department of Education has announced that the funding will be available for the next three years to set up more than 10,000 additional respite placements. It forms part of a wider package of reforms that ministers have launched to transform education and opportunities for most disadvantaged.
The new funding represents a campaign win for the Disabled Children’s Partnership (DCP), of which Together for Short Lives is a steering group member. DCP has been campaigning for dedicated funding in disabled children’s social care for years, alongside a wide network of other charities, thousands of parents, young people and allies, parliamentarians, newspapers and more.
Andy Fletcher, Chief Executive of Together for Short Lives, said: “I am grateful to ministers for listening to the overwhelming case for additional investment in short breaks for respite for disabled children and their families. The pressure on families caring for a seriously ill child with complex needs is immense. Caring for a child 24/7 and the knowledge that your child will die young can be devastating, so having access to regular short breaks is vital to relieve this stress, spend time as a family and do the things that other families do.”
The news also follows ‘Give Me a Break’, a report published by Together for Short Lives and Julia’s House Children’s Hospice in 2020. This included research by Pro Bono Economics, in association with volunteers from Compass Lexecon, which sets out the positive impact that short breaks have. The team estimated that 11 per cent of parents of children who need respite delivered by children’s palliative care providers would experience significantly less stress as a result of receiving breaks – moving them out of the ‘most stressed’ category of society. As a result, they improve parents’ physical and mental health and reduce their demand for NHS care. They reduce the number of sick days parents need to take off work, leading to improved productivity and additional tax revenue. They are likely to have a positive impact on siblings and reduce the risk of parental relationships breaking up.
Existing legislation and government policy are clear that local councils in England should make sure families can access short breaks. However, too many cannot, which is a serious health inequality. The way in which short breaks are planned, funded and provided is patchy and unsustainable. Three quarters (74 per cent) of children’s hospices reported a cut or freeze in their local authority funding between 2019/20 and 2020/21. 63 per cent of children’s hospices expected their local authority funding to be cut or frozen between 2020/21 and 2021/22. More widely, DCP has identified an annual £573 million funding gap in disabled children’s social care.
Andy Fletcher said: “It is now vital that local authorities use the new money to ensure that more seriously ill children and their families can access the breaks they need. I also call on the government to look at what more they can do to make sure that short break services, provided by children’s hospices and other voluntary and statutory sector organisations, are put on a sustainable financial footing for the future.
I am grateful to ministers for listening to the overwhelming case for additional investment in short breaks for respite for disabled children and their families. The pressure on families caring for a seriously ill child with complex needs is immense.
Andy Fletcher, Chief Executive of Together for Short Lives