Five primary care trusts claim there are no disabled children living in their area, despite an estimated one in 20 under-16s having a disability.
This was among the key findings of a “damning” review by the Care Quality Commission (CQC), based on the views of children and families and data from 151 primary care trusts (PCTs).
According to the report, published today, Bury, Derby City, Islington, North Staffordshire and Warrington PCTs claim to have no disabled children in their area.
This raises concerns about commissioning, the CQC said. “Without a basic awareness of what the needs of the local population are, it is hard to understand how a PCT can assure itself it is commissioning services to meet them,” the report noted.
“We therefore urge commissioners to improve the quality of information they hold about these services.”
The report also found a significant disparity between the experiences of disabled children and families, which were found to be “overwhelmingly negative”, and the services PCTs claimed they offered.
Families felt access to, and involvement in, services was a challenge and said they waited too long for access to services and initial diagnosis. In response to a self assessment questionnaire, however, PCTs reported ‘high levels of access and user-centred care’.
Fifteen PCTs do not provide short breaks services for disabled children and young people, the review found, while 87 PCTs do not involve disabled children and their families in the interviews or assessment of those that deliver their care package.
A further 65 PCTs do not know how many referrals for wheelchairs they made between April and September 2010, while nine said children waited almost a year for a wheelchair.
David Congdon, a board member of the campaign group Every Disabled Child Matters, said the findings were damning and urged the Department of Health to take action.
“We are extremely concerned by the findings. It is clear that many PCTs are not aware of the basic needs of local disabled children,” Congdon said.
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