Children with epilepsy, or other conditions causing fits, are missing out on short breaks due to confusion over whether funding should be provided by local authorities or primary care trusts, according to Every Disabled Child Matters.
In its report on the quality and progress of the short breaks system over the past three years, EDCM said children faced exclusion because local authorities viewed them as a “health and safety risk”.
This issue has been exacerbated by conflict between authorities and PCTs on responsibility for funding the breaks. EDCM called on the national government to intervene.
“As there will no longer be a requirement on local areas to convene a children’s trust board, it is crucial that the government clearly sets out where accountability will lie for ensuring that short breaks are delivered to meet both clinical and family support needs,” the report said.
“The Department for Health, through the Health and Social Care Bill, needs to ensure that disabled children and children with SEN will be a priority for health and wellbeing boards and there will need to be an equal responsibility between health and other agencies for outcomes for disabled children and children with SEN.”
The report also found that parents were worried about the removal of ring-fenced funding for short breaks. Although funding has increased by £800m from this year, the coalition government rolled it into the early intervention grant.
Ring-fenced short break provision had been regular, reliable and appropriate, according to parents who feared a return to the limited services of the past.
“I am feeling very apprehensive,” one parent told EDCM. “The whole of Aiming High for Disabled Children was brilliant. It put parents and our children with disabilities at the forefront and now we don’t know what’s going to happen in the future – are we going to be back to square one?”
Young people turning 18 were also missing out on short breaks, the report found, as six months before their birthday many were unable to be assessed for them by either children’s or adults’ services.
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