Where’s the care?

The government is determined to get more parents into
employment, and has recognised that affordable child care must be
available to make this possible. But for parents of disabled
children, finding someone able and willing to care for their child
is often next to impossible.

Contact a Family supports parents of disabled children, and its
helpline answers enquiries from over 14,000 parents a year, many of
whom are facing child care problems. The charity recently carried
out a survey of 1,870 parents visiting our website. Of these
parents, over 1,000 had given up work or reduced their working
hours because of a lack of child care. Here are some of their

“I am really struggling with this. I need to work to help
to support my family but my son needs me to be at home.”

“My daughter’s condition is unpredictable, often resulting in
hospitalisations for crises. I had to leave work after realising
the futility of trying to write a report while sitting at my
daughter’s hospital bedside at two in the morning. Finding
appropriate care is almost impossible, although my daughter is easy
going. Her medical needs are just too complex and many people have
been unwilling to watch her due to fear of what might happen, as
illness comes on suddenly.”

“We have a 17 year old with a rare disorder. She is physically too
old for child care yet mentally not old enough to be by herself in
the summer holidays, or go to activities for adults. This is a
large challenge.”

“I work days and my husband works nights. We don’t enjoy doing
this but it is the only way we can afford things. It’s very hard to
balance work and three children.”

“I want to return to work – but simply cannot find child care for
my son with attention deficit hyperactive disorder. To date 13
childminders have refused us.”

Contact a Family’s anecdotal evidence of the extent of this problem
is backed up by a number of studies.

A recent survey in Southwark, London, showed that there is not
enough after-school and holiday provision for disabled children –
only 9 per cent of statemented children and 1.4 per cent of
children with special needs receive out of school
provision.1 Holiday schemes provide for only 7.4 per
cent of children with statements and only 30 per cent of severely
disabled children. Child care during the holidays is the highest
priority for working and non-working families. Seventy-two per cent
of all parents used some form of child care, but only 55 per cent
of parents of children with special needs.

A survey by Suffolk Action for Communities in Rural England found
that 75 per cent of parents described insufficient child care
facilities for children with special needs and said they needed
information and services to be better co-ordinated and

We welcome the decision to fund professional care arranged for a
disabled child in the parent’s own home through the child tax
credit. However, many families will still not be able to benefit,
because parents often prefer to trust a family member to care for
their child. Many have told Contact a Family that only their own
relatives are prepared to care for a severely disabled child, but
this type of informal family-based care, even when paid for, will
not be covered by child tax credits.

The government needs to address the lack of affordable and
accessible child care provision for disabled children as a matter
of urgency. Otherwise, many more parents will have no choice but to
reduce or give up work. This might lead to a poverty trap from
which many will find it impossible to escape.

Early Education and
Childcare for Children aged 0-14 with Disabilities and Special
, Southwark Council, 2000

2 Suffolk Action for Communities in Rural England,
Challenging Inclusion, 2002

Francine Bates is chief executive of Contact a

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