Geoff Adams-Spink BBC News Online disability affairs reporter

The quality of care for many of the UK's 49,000 severely disabled children is inadequate because too much money is spent on administration, according to a new report.

The report says parents should decide on care needs

Called People not Budgets, the report, published by the Centre for Policy Studies, says the money used for procedures for assessing a child's social care needs could be better spent if it was given directly to families.

Responding to the findings, the government said it was committed to giving more support to the parents of disabled children.

But the report's authors - Richard Smith and Florence Heath - found that almost a half of the families of severely disabled children received no external support, nearly a third had less than two hours help a week and 80% thought health and social services were not properly co-ordinated.

They say more than a quarter of the �540m spent on care for disabled children goes on "assessment and commissioning tasks" - in other words deciding who needs what care and how it will be delivered.

"Writing this paper came from my personal experience with my youngest daughter, Sophie, who's now 16," Mr Smith told BBC News Online.

Parent power

"I felt it was time to make the wider world aware of the problems that the parents of profoundly disabled children have to put up with."

He and his co-author are suggesting using the �140m spent on assessments to pay parents a carers' allowance which would amount to about �115 a week.

"Let them use that to provide the care they need - let's put the power back in the hands of parents."

The proposal is based on a system that has been used in Austria for several years.

He says evaluations have proved that there is very little misuse of the money even though it doesn't have to be accounted for.

Mr Smith designed wheelchairs to appeal to young people

Mr Smith - a businessman from Herefordshire - recently hit the headlines by designing a range of fashionable wheelchairs for young people.

He is challenging all political parties to take a serious look at the type of provision made by the state for severely disabled children.

"All governments have overlooked this, and I would say to all major parties - particularly in their conference season - they should give this report serious consideration."

The Department for Education and Skills says it wants to ensure that there are, "better family support services which are flexible and responsive to their particular circumstances and needs".

"The recently published Children's National Service Framework set new national standards for the NHS and Social Services for children," a spokesperson said.

"The standards will ensure that disabled children and their families will receive integrated health, social care and education services, often provided from one place such as children's centres."