The charity group Every Disabled Child Matters warned today that NHS funding intended for disabled children may not reach them, despite the group being a priority for the service in 2008-9.
It said a survey of 30 primary care trusts had revealed that not one could specify how much they are spending on disabled children or those with palliative care needs.
The NHS operating framework for 2008-9 made disabled children one of four key priorities for local areas and called on PCTs to improve the range of short breaks, the quality and experience of palliative care, access to therapies and support for transition to adult services.
Extra money for short breaks
Last October, the Department of Health said PCTs had been provided with extra money to fund short breaks for disabled children, in partnership with councils, from 2008-11. But unlike the £430m from the Department for Children, Schools and Families to help councils improve services for disabled children - most of which is ring-fenced - the precise sum from the DH for PCTs has not been identified.
The EDCM survey found that some PCTs were awaiting further information from the DH to determine how much they had been allocated.
'Extremely worrying'
Campaign manager Steve Broach said: "While we are delighted with the clear commitment from central government that disabled children are a new priority, it is extremely worrying that there appears to be a total lack of clarity locally of what this means in practice for PCTs."
EDCM, which comprises a number of children's charities, called on the DH to clarify how much money had been allocated for disabled children and those with palliative care needs, and for PCTs to specify how much they would spend locally.
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