Geoff Adams-Spink BBC News Online disability affairs reporter

Families say the system works against them

A coalition of charities - including Mencap, Barnardos, the Muscular Dystrophy Campaign and NCH - says the Disabled Facilities Grant (DFG) needs to be overhauled.

They say the way the grant is being distributed is failing families on modest incomes who then have to find huge sums of money so that their child is able to live at home.

The government says many of the charities' criticisms will be addressed in a review of DFG policy, whose conclusions are expected early next year.

The coalition says the system needs to be improved by:

• Abolishing the means test, following the lead taken by Northern Ireland
• Streamlining the application process to reduce waiting time
• Increasing the current limit which means some families have to pay more than �50,000 towards the cost of adaptations

"Many parents are being forced to make the choice between going into debt or not making the necessary changes to their home," said Mencap chief executive, Jo Williams.

"We find this position totally unacceptable and call for the government's review group to recommend the abolition of this crude means test. Its removal would make a huge difference to the quality of life for many families with disabled children."

Uphill struggle

Angela Stewart-Paul from London has two sons aged 9 and 11 both of whom have autism.

The younger boy, Patrick, also has the most aggressive form of Muscular Dystrophy.

Mrs Stewart-Paul has to carry Patrick upstairs

He will soon lose the ability to walk, and by the time he is a teenager he will need constant care and will be a full-time wheelchair user.

Mrs Stewart-Paul is a head of department in a large school but has had to reduce her hours in order to care for her sons.

The boys' father works part-time so that he, too, can help to look after the children.

The family was assessed as needing a ground floor extension to provide a bedroom and a bathroom including special equipment.

Despite having a joint income of �40,000, they were expected to contribute almost �70,000 towards the cost of the improvements and were given no Disabled Facilities Grant.

As a result, the work has not yet been carried out.

"You have to fight for everything - the strain is enormous," said Mrs Stewart Paul.

"Our joint income is modest and our outgoings are pretty crippling - all our energies should really be focused on our son but instead they are being diverted into battling with a system that doesn't seem to care."

"To be told that we are not entitled to any support is like a slap in the face - the DFG means test is ruining families' lives."

The government points out that there is an extremely high demand for DFG's and that the means test is a way of targeting help where it is most needed.

It says the speed of the application process entirely depends on local authorities, and that some are more efficient than others.