Credit is not enough

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.