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Raising children while holding down a job is a challenge for most parents, but for those with disabled children the odds are stacked against them. Their children require extra care and in order for parents to hold on to a job, they must find and pay for appropriate child care.

According to the Council for Disabled Children, 85 per cent of parents with disabled children would like to work but few do. So what are the problems for parents of disabled children who want to work and what benefits and services are available?

From 1 April the tax credits for child care costs are changing (see box). The Inland Revenue claims this will encourage more parents who want to work, including those with disabled children, to claim what they are eligible for.

This will not necessarily be the case, says Disability Alliance policy officer Gabrielle Preston. "We fear parents with disabled children will not derive much benefit from the new tax credits because of the sort of confusion about benefits entitlement that prevents many families claiming."

Preston wants parents to have access to the necessary tax credits before they take up employment in order to prepare for work.

Gary Vaux, Hertfordshire Council's head of money advice, says the limitations of the child care element in the new working tax credit and the requirement to use external and accredited child care are a "stumbling block". He says: "This provision is either unavailable, unsuitable or too expensive."

Mike Hurdiss, a benefits policy officer for the charity Scope, backs the new tax credits but says that, even with more generous and greater continuity of support, work remains little more than a "pipedream" for many parents with disabled children.

He says: "Aside from the physical and emotional demands of combining work with caring, the parents of disabled children are often confronted by an acute shortage of suitable child care."

Contact a Family, a national charity that provides advice to parents of disabled children, surveyed the 1,870 parents who visited its website. Findings revealed that 1,000 of them had given up or reduced their working hours because of a lack of child care.

Parents told the charity that only their relatives were prepared to care for a severely disabled child. But this type of informal family-based arrangement - even when paid for - is not covered by the tax credits, which apply only to registered child care.

Janet Mearns, manager of charity Parents At Work's group for parents of disabled children, says inflexible benefits and poor child care provision are barriers to work and affect this group. "Going to work in our society provides people with an identity and, if people do not have that, what happens to them?"

So what can be done to improve the situation for parents of disabled children who want to work? Preston says coherent and well co-ordinated services are essential, as are understanding and flexible employers and affordable child care.

Francine Bates, chief executive of Contact a Family, agrees: "The government needs to address the lack of affordable and accessible child care provision for disabled children urgently. Otherwise more parents will have no choice but to reduce or give up work."

Vaux calls for a revamp of the benefits system itself. "The government should amend the earnings-disregards for carers allowance and income support. It should amend the child care costs scheme to make it more flexible and responsive to the needs of disabled children."

Tax credit changes from April

The working families' tax credit, the children's tax credit and the disabled person's tax credit will from 1 April be replaced by the child tax credit and the working tax credit.

The child tax credit is for families with at least one child. It is paid at a higher rate if the child is disabled and at an enhanced rate in the case of severe disability. The child tax credit, with the child care element of the working tax credit, will bring together all income-related support for children into a single payment.

The working tax credit is for people in paid employment. Like the working families' tax credit (defunct from 1 April) it will be paid to parents on low to medium wages who work at least 16 hours a week. Within it is an element that can be used to pay for child care as long as it is provided outside the home and in a registered setting, such as a childminder, a school club or a day nursery. The tax credit meets up to 70 per cent of the cost of child care, up to £135 for one child and £200 for two or more children a week. Unlike the working families' tax credit, the working tax credit will go directly to the main carer rather than through the salary of the main earner.

Information issued last month by the Inland Revenue may enable home-based child care costs to be included within the working tax credit. Further details of how this will work in practice are awaited.

'She feels trapped on benefits'

Kim Fuller is a 37-year-old single parent. She feels proud that she managed to continue with paid work while bringing up Marc, now 19, and Lauren, 13.

Last December Fuller was forced to give up her part-time job as a health care assistant at a nursing home after Marc left home. He had cared for Lauren, who had West's syndrome as a baby (where the infant has spasms) and now has epilepsy and learning difficulties, while Fuller worked.

Fuller could not find a registered childminder willing to take on Lauren. To qualify for the working families' tax credit Fuller had to look for outside registered child care.

She says: "I called ordinary registered childminders and it was clear that they didn't have the skills to deal with a child with learning difficulties like Lauren and her associated needs."

When Fuller approached social services for help she says they told her to employ an agency nurse to care for Lauren while she worked, which she could not afford. She says the Benefits Agency was equally unhelpful: "A lot of staff I spoke to there could not understand my need to work. It was as if I had a child with special needs so why would I possibly want to work?"

On top of her wages Fuller received the working families' tax credit, disability living allowance, invalid care allowance and maintenance from her ex-husband. Her total monthly income was about £1,100. After giving up work, she receives about £450 in income support and her maintenance and disability living allowance are taken into account.

Fuller says leaving work has badly affected every area of her life and she feels trapped on benefits. "Lauren wants to see Chitty Chitty Bang Bang and now I can't afford the tickets," she says. "I really feel like I've failed her."

- Fuller runs a West's syndrome support group and can be contacted through Contact A Family on 020 7608 8700.