Irene Colman is at the end of her tether. Her eight-year-old daughter Emily has a rare condition - cri du chat syndrome - and is disabled. Yet while Emily cannot walk or talk, she is becoming expert at escaping from her cot, climbing over the stair gates, and crawling across the floor. Irene is desperately trying ti find a safer place to live.

Her plan is to convert the garage into a downstairs bedroom, bathroom and play area for Emily. Doing this would drastically improve the whole family’s quality of life - at the moment an increasingly heavy Emily has to be carried up and down the stairs to get to the bedroom and bathroom.

"It’s getting dangerous for Emily," says Irene. "There’s no safe area where I can put her and know she’s going to be safe. We have to start doing something now."

But to do the building work would cost between £30,000 and £40,000 - a sum that Irene has to find herself. She works part time in a nursing home and her boyfriend Ian is a self-employed carpenter, which means they do not qualify for financial help. In fact, the council told Irene that she can go to a bank and borrow £85,000 for the work - something that she is reluctant to do. Yet they have to do something - Emily is due to have an operation soon that will involve wearing a back brace for three months, making carrying her up and down stairs almost impossible.

The Colmans’ housing dilemma is a familiar one. A report from the Joseph Rowntree Foundation in 2002 found that families with a disabled child have worse problems with their housing than families with non-disabled children. Three thousand parents of severely disabled children were interviewed and a staggering nine out of 10 said they had at least one difficulty with their housing with a quarter saying there were six or more problem areas.

The most common issue was lack of space. Of course this can be an issue for any family, but it is far more likely to be a problem among families with a disabled child. More space is needed for playing, for privacy and time out from each other, and for using and storing specialist equipment.

Christine Lenehan is the director of the Council for Disabled Children. She is not at all surprised that families with a disabled child say that their homes feel cramped. "There may be four or five different pieces of equipment even for children under two - things like oxygen cylinders, feeding pumps, wheelchairs. The house of a severely disabled child can often look like a hospital ward and so even in relatively decent housing it can be a challenge. Often you can’t move for stuff."

Even the less technical necessities can be problematic. Nappies for incontinent children tend to be delivered in bulk every four to six weeks, with 14 or so large cardboard boxes needing to be stowed.

For many families with a disabled child, acquiring a home that meets their needs can be nigh on impossible. And while those in local authority accommodation can apply to be re-housed, there’s no guarantee that the new property will be any better.

"I know of a child whose family was pleased because they were offered adapted housing, only to find that it had been adapted for adults. So the gas cooker was too low for the parents and the shower was still no good for the child," says Lenehan.

Councils should keep better records of adapted housing, she adds. In some cases adaptations have been ripped out after a family has moved away, even when there are others crying out for them.

When moving is not an option, the only solution may be to adapt the property. Local authorities and housing associations may agree to carry out adaptations for those living in their accommodation. Otherwise families needing financial help must apply for a disabled facilities grant.

Most of the dissatisfaction with the disabled facilities grant comes down to the means test involved. A calculation is made based on the money coming into the household and the outgoings. Critics say it is based on unrealistic allowances for each family member. Mortgage repayments are not taken into account, despite the fact that families with disabled children often have bigger and more expensive homes and only one parent in work. Disabled facilities grants are hard to come by, and parents are often expected to contribute several thousand pounds themselves.

Around a third of families cannot afford the contributions and so often the necessary adaptations are not carried out. As a result, many families are forced to manage in highly inappropriate housing. There are examples of disabled children who have never been able to have a bath, and parents who have damaged backs from carrying their children up flights of stairs when the lifts are broken. It has even been known for children who use a wheelchair outside of their home to have to crawl around on the floor once inside, all because their wheelchair won’t fit through the doorway.

But it’s not just children with physical impairments that have housing difficulties. The JRF report found that all types of families with disabled children were affected, including those where the children had learning difficulties or challenging behaviour. For autistic children, safety can be a particular issue.

"Children with autism have no awareness of danger at all and quite often, if there is the opportunity, they will run out of the front door and into the road," says Louise Martin, a help line co-ordinator at the National Autistic Society. "It is important that the doors and windows are secure. They also need a garden as they are often anxious children and need somewhere to run around," she says.

Too little space is again a problem, but not because of wheelchairs or other bulky equipment. Increasingly, families have more than one autistic child, and living in cramped conditions without a place to relax can be a challenge for everyone. It is also important that there is enough space for non-autistic siblings to have their own rooms - away from their brother or sister’s sleeping difficulties and tendency to damage others’ possessions.

Disabled children and their families are disadvantaged so frequently that to many it seems outrageous to leave them without suitable homes. Action is urgently needed and abolishing the means test part of the disabled facilities grant could have a major impact. This has already been done in Northern Ireland, and fingers are being crossed for England and Wales to follow suit. The Office of the Deputy Prime Minister is carrying out a review and is expected to make a decision later in the year. With estimates suggesting that abolishing the means test would cost the government just £30m extra each year, disabled children and their families are wondering what’s taking so long.

- Joseph Rowntree Foundation report The Housing Needs of Disabled Children: The National Evidence is available from www.jrf.org.uk/knowledge/findings/socialcare/n72.asp