The cost of raising a child with a disability is three times higher than that for bringing up other children, leaving many families facing poverty and social exclusion.

In July a research report (1) by the Child Poverty Action Group (CPAG) shone a spotlight on this issue and its findings made uncomfortable reading. The study revealed that the downrating and withdrawal of key benefits from families with disabled children caused high levels of stress and dramatic fluctuations in incomes.

Report author and policy and research officer Gabrielle Preston says one of the major problems families with disabled children face is misinformation on benefits entitlement. "There is a high level of misadvice generated by those who answer the [government] benefit helplines and this leads to poor decision-making over awards."

One form of financial help available to a parent or guardian of a disabled child under 16 is disability living allowance (DLA). It is applicable for children with a severe physical or mental illness or disability if they need much more help or looking after than other children of the same age because of their condition. The benefit contains a mobility component and a care component payable at different levels depending on how disabled or ill the child is.

While the benefit can significantly improve the lives of some families with disabled children, it is not without its problems, according to Mark Woolley, research officer at the Family Fund, a charity which provides grants to such families.

He says the application form itself is a hindrance as it is 60 pages long, complicated and people are often turned down on their first application because they make mistakes while answering the questions.

These difficulties are familiar to Mark Robertson, national advice and information manger for Contact a Family, a charity for families with disabled children which runs a helpline. Robertson says he often hears reports of parents refused the allowance because they were "too positive" about their child’s capabilities.

"The assessment process of the DLA is difficult for parents because they need to describe what their child cannot do and is not achieving," he says. "This is hard for them to face up to and be honest about."

Another stumbling block for parents of disabled children is that their caring responsibilities prohibit them going out to work. This is compounded by a lack of suitable child care. Helen Wheatley, senior development officer at the Council for Disabled Children, part of children’s charity NCB, says this continues the cycle of poverty as parents remain stuck on benefits.

This difficulty is made worse, says Preston, by some parents being forced into debt to meet their additional costs.

Although the picture may look bleak for families with disabled children, until recently they had a champion in Whitehall. Lord Filkin was the junior minister for children and families but he left the Department for Education and Skills (DfES) after the general election.

So who will pick up Filkin’s baton? Preston says CPAG and other disabled children’s groups intend to lobby the all-party parliamentary group on disability to become involved. "We also have to locate an MP who is interested in this issue and willing to take it up."

All hope is not lost, says Woolley. He points to a Child Poverty Accord meeting last June where disabled children and their families’ experiences of poverty were discussed. The group comprises the DfES, the Local Government Association, the Department for Work and Pensions and the Treasury and Woolley believes this shows the government’s commitment to addressing the problem.

Having a sole champion for disabled children may be counter-productive in the long term, says Wheatley. "The risk is when you have one champion you end up with a skewed approach as they are the only one moving forward and the other government departments lag behind."

She would prefer the government to work co-operatively in implementing the substantial legislation and guidance that already exists for this client group.

So what can be done to improve the financial lives of families with disabled children? The unanimous answer from the professionals is to simplify the DLA application process. Preston and Robertson believe more should be done to inform and support families applying for DLA at a local level, as many are unaware of its existence.

Woolley calls for up-to-date research on the number of families with disabled children as current figures are estimates.

The most significant change needed, says Wheatley, is how society sees disabled children and their futures.

"We need to support disabled children and help them get to where they want to go, be it in education or employment. Otherwise we are never going to break the cycle of poverty as they will grow up and go on to benefits too."

1. Helter Skelter: Families, Disabled Children and the Benefits System, Child Poverty Action Group, July 2005

'I am Always broke’

La Toya Hector* is 28 and a single mother of three children, aged 11, 10 and two and a half. Reed*, her oldest child, has several disabilities, including no motor skills in his hands, extremely poor eyesight and a stutter.

Raising three children alone is a struggle for Hector, not only emotionally and physically but financially too. She is unable to work because of her caring responsibilities and relies on state benefits. Hector receives about £949 a month in benefits, £720 of which is made up of carers’ allowance, child benefit and income support and £229 is disability living allowance for Reed.

She has only been receiving DLA for the past year, after her health visitor told her about it. A welfare rights officer helped her complete the application form. Hector says: "If I hadn’t had her help I wouldn’t have been able to do it – the questions were all tangled up."

Although the allowance has increased her income, Hector still has to make sacrifices to make ends meet and is "always broke" at the end of the month.

What she misses most is having the money to take the family on holiday or on day trips. "Everything I do is centred on the house and caring for the kids," she says. "What I want to be able to do is get out and do things with them."

*Not their real names.