Means of improvement?

Irene Colman is at the end of her tether. Her eight-year-old
daughter Emily has a rare condition – cri du chat syndrome – and is
disabled. Yet while Emily cannot walk or talk, she is becoming
expert at escaping from her cot, climbing over the stair gates, and
crawling across the floor. Irene is desperately trying ti find a
safer place to live.

Her plan is to convert the garage into a downstairs bedroom,
bathroom and play area for Emily. Doing this would drastically
improve the whole family’s quality of life – at the moment an
increasingly heavy Emily has to be carried up and down the stairs
to get to the bedroom and bathroom.

“It’s getting dangerous for Emily,” says Irene.
“There’s no safe area where I can put her and know
she’s going to be safe. We have to start doing something
now.”

But to do the building work would cost between £30,000 and
£40,000 – a sum that Irene has to find herself. She works part
time in a nursing home and her boyfriend Ian is a self-employed
carpenter, which means they do not qualify for financial help. In
fact, the council told Irene that she can go to a bank and borrow
£85,000 for the work – something that she is reluctant to do.
Yet they have to do something – Emily is due to have an operation
soon that will involve wearing a back brace for three months,
making carrying her up and down stairs almost impossible.

The Colmans’ housing dilemma is a familiar one. A report
from the Joseph Rowntree Foundation in 2002 found that families
with a disabled child have worse problems with their housing than
families with non-disabled children. Three thousand parents of
severely disabled children were interviewed and a staggering nine
out of 10 said they had at least one difficulty with their housing
with a quarter saying there were six or more problem areas.

The most common issue was lack of space. Of course this can be
an issue for any family, but it is far more likely to be a problem
among families with a disabled child. More space is needed for
playing, for privacy and time out from each other, and for using
and storing specialist equipment.

Christine Lenehan is the director of the Council for Disabled
Children. She is not at all surprised that families with a disabled
child say that their homes feel cramped. “There may be four or five
different pieces of equipment even for children under two – things
like oxygen cylinders, feeding pumps, wheelchairs. The house of a
severely disabled child can often look like a hospital ward and so
even in relatively decent housing it can be a challenge. Often you
can’t move for stuff.”

Even the less technical necessities can be problematic. Nappies
for incontinent children tend to be delivered in bulk every four to
six weeks, with 14 or so large cardboard boxes needing to be
stowed.

For many families with a disabled child, acquiring a home that
meets their needs can be nigh on impossible. And while those in
local authority accommodation can apply to be re-housed,
there’s no guarantee that the new property will be any
better.

“I know of a child whose family was pleased because they were
offered adapted housing, only to find that it had been adapted for
adults. So the gas cooker was too low for the parents and the
shower was still no good for the child,” says Lenehan.

Councils should keep better records of adapted housing, she
adds. In some cases adaptations have been ripped out after a family
has moved away, even when there are others crying out for them.

When moving is not an option, the only solution may be to adapt
the property. Local authorities and housing associations may agree
to carry out adaptations for those living in their accommodation.
Otherwise families needing financial help must apply for a disabled
facilities grant.

Most of the dissatisfaction with the disabled facilities grant
comes down to the means test involved. A calculation is made based
on the money coming into the household and the outgoings. Critics
say it is based on unrealistic allowances for each family member.
Mortgage repayments are not taken into account, despite the fact
that families with disabled children often have bigger and more
expensive homes and only one parent in work. Disabled facilities
grants are hard to come by, and parents are often expected to
contribute several thousand pounds themselves.

Around a third of families cannot afford the contributions and
so often the necessary adaptations are not carried out. As a
result, many families are forced to manage in highly inappropriate
housing. There are examples of disabled children who have never
been able to have a bath, and parents who have damaged backs from
carrying their children up flights of stairs when the lifts are
broken. It has even been known for children who use a wheelchair
outside of their home to have to crawl around on the floor once
inside, all because their wheelchair won’t fit through the
doorway.

But it’s not just children with physical impairments that
have housing difficulties. The JRF report found that all types of
families with disabled children were affected, including those
where the children had learning difficulties or challenging
behaviour. For autistic children, safety can be a particular
issue.

“Children with autism have no awareness of danger at all and
quite often, if there is the opportunity, they will run out of the
front door and into the road,” says Louise Martin, a help line
co-ordinator at the National Autistic Society. “It is important
that the doors and windows are secure. They also need a garden as
they are often anxious children and need somewhere to run around,”
she says.

Too little space is again a problem, but not because of
wheelchairs or other bulky equipment. Increasingly, families have
more than one autistic child, and living in cramped conditions
without a place to relax can be a challenge for everyone. It is
also important that there is enough space for non-autistic siblings
to have their own rooms – away from their brother or sister’s
sleeping difficulties and tendency to damage others’
possessions.

Disabled children and their families are disadvantaged so
frequently that to many it seems outrageous to leave them without
suitable homes. Action is urgently needed and abolishing the means
test part of the disabled facilities grant could have a major
impact. This has already been done in Northern Ireland, and fingers
are being crossed for England and Wales to follow suit. The Office
of the Deputy Prime Minister is carrying out a review and is
expected to make a decision later in the year. With estimates
suggesting that abolishing the means test would cost the government
just £30m extra each year, disabled children and their
families are wondering what’s taking so long.

– Joseph Rowntree Foundation report The Housing Needs of
Disabled Children: The National Evidence is available from www.jrf.org.uk/knowledge/findings/socialcare/n72.asp