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
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
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
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
"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
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
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
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."
- 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.