Further memorandum submitted by the Disability
Alliance (CP 18A)
FAMILIES WITH TWO OR MORE DISABLED CHILDREN—PRELIMINARY
FINDINGS
Gabrielle Preston, Policy and Information Officer
at Disability Alliance, reports on the additional costs incurred
by families with two or more disabled children.
This article reports on some very tentative
findings from a preliminary study conducted with a small number
of families with two or more disabled children. Although by no
means a representative sample, some of the issues raised by these
families highlight anomalies within the benefit system that might
warrant further investigation.
BACKGROUND INFORMATION
There are currently an estimated 20,000 families
with more than one disabled child, of which about 7,500 families
are caring for two or more severely disabled children. This means
that there are well over 15,000 severely disabled children living
in a family where there is another severely disabled child. Many
of these families also have non-disabled children. The vast majority
of such families (for whom work is usually not an option and who
are therefore heavily reliant upon the benefit system) survive
on low incomes.
EXTRA COSTS
While many families on low incomes may suffer
terrible hardship, the situation for families with disabled children
is significantly worse because low income is compounded by extra
costs. These costs soar tangentially when families are caring
for two or more disabled children.
Given that two carers are often needed very
few parents are in a position to work, although the majority would
like to. The stress of looking after two or more severely disabled
children without adequate support clearly exacts a high toll on
both health and relationships. Research into such families[214]
emphasises that managing simultaneous demands is rendered
infinitely more difficult by unsuitable housing, lack of transport,
restricted opportunities to access leisure facilities, and the
number of different professionals and agencies involved in family
life. Families feel that having two disabled children is "more
than double" having one disabled child, but suspect that
support systems try to get "two for the price of one".
Although the benefit system recognises that
bringing up a severely disabled child costs more than bringing
up a child without a disability, benefit income varies considerably.
Many parents of disabled children do not receive the maximum amount
of benefit because they are bewildered by a confusing system and
are often unaware of their entitlement. Already stressful lives
are made worse by an endless round of form filling, assessments,
and appealing against benefit decisions. A disturbing number of
families have never received any advice on benefit entitlement.
Research reveals that "Socially disadvantaged"
families (minority ethnic families, lone parents, families living
in rented accommodation) are less likely to apply for disability
living allowance (DLA), are more frequently rejected when they
do, and when awarded the benefit tend to get it at a lower level
than other families whose children have similar impairments.[215]
Even when families do receive the maximum
benefit income, they often find that it falls well short of the
minimum budget needed to care for a disabled child. In 1999 a
Joseph Rowntree study[216]
calculated that the average additional weekly cost of bringing
up a disabled child is £99.15, and that even if families
were receiving the maximum benefit entitlement for their disabled
child, benefits would have to be increased by between £30
and £80 a week to meet essential minimum needs.
Despite recent improvements to the social security
system, disability benefits still don't reflect additional costs.
The families with disabled children who took part in the Barnado's
recent study Still Missing Out[217]
report that recent improvements in benefits for disabled children—for
example increases in the child premium of income support and extending
the higher rate mobility component of DLA to three and four year
old children—have made little or no difference to their
financial situation. They also expressed concerns about their
children's transition to adulthood.
Disability Alliance is currently gathering evidence
of additional expenses from families with two or more disabled
children with a view to making recommendations for improvements
to the social security system.
SOME PRELIMINARY
FINDINGS
Our preliminary findings are summarised.
Work
Most of the mothers had given up work in order
to care for their children. Although many would like to return
to work (at least on a part-time basis) are unable to do so because
of problems with childcare, and the general dearth of appropriate
after-school or holiday clubs. One mother is concerned about losing
her invalid care allowance (ICA). Some of the fathers did not
work, either because of caring responsibilities or because of
ill-health or a disability. However, one mother whose husband
works full-time comments that "in an ideal world" he
wouldn't have to "because the family needs two carers".
Parental ill-health/disability
All the mothers in our small sample suffered
from some form of ill-health, which they put down to the stress
of caring. A disproportionate number of their husbands also experienced
ill-health or were disabled.
Family Support
Most of the mothers get little or no support
from members of their extended family who "can't or won't"
understand the needs of their disabled children. However one mother
who receives a lot of support from her parents is worried about
the impact on their health as they get older: "my father
is no spring chicken and there's a lot of lifting . . ."
Accessing information
This was a big problem for all the families.
As one mother put it "to begin with we didn't know anything—it's
only through friends that I found out about DLA: no-one tells
you anything."
Assessments:
One mother comments "Because I have three
children with disabilities, they've all got different appointment
times, so when I take one child in I have to pay someone to look
after my other children . . . they make no allowances for that,
none whatsoever."
Carers
The mothers do not feel adequately compensated
for their hard work, and felt that ICA should be multiplied by
the number of people they were caring for. One mother who gave
up her full time job as a nurse to care for three disabled children
and a disabled husband receives only one lot of ICA for the eldest
child. "It's a joke!" she comments bitterly. "If
I was nursing these three children in hospital it would cost them
£2,000 a week . . .".
Appeals
A number of families reported applications for
benefits being refused, downrated, or withdrawn. Balancing appeals
and tribunals alongside hospital appointments and assessments
is clearly extremely stressful, and has an impact on a family's
ability to launch a successful appeal. One family was unable to
appeal within the allocated time limit when their application
to the Social Fund for £300 to buy an orthopaedic mattress
for their daughter was turned down because she had gone into hospital
for a lengthy stay. Another family, who spent 12 months appealing
against a decision to have DLA withdrawn completely and replaced
with a decision to allocate it for life (which indicates something
seriously amiss in the decision-making process) missed the deadline
for applying for a Motability car.
Educational expenses
Although the families we spoke to seemed reasonably
happy with educational provision, appropriate schools are often
a long way from their homes, and there were some associated costs.
Although local councils usually provide buses to transport the
children to and from school, parents have to collect them in the
middle of the day if they became ill, or have a medical appointment.
Some parents had mobiles and pagers so they could be contacted
in an emergency. One parent reported that although the school
provided special pencils, pencil grips, wrist boards etc. these
were "expected to last her all year" and she had to
pay for replacements. She recently bought a power chair for her
daughter when she transferred to secondary school which cost £3,366.
(The council provides only manual wheelchairs.) Another mother
buys special drinkers and cutlery for her children to use at school.
Housing
We received mixed reports about housing. Two
families had moved in order to find suitable affordable accommodation—or
a council who was prepared to finance adaptations. Long delays
often result in families having to finance adaptations themselves.
However, one mother from Liverpool had nothing but praise for
her local council and housing department who had worked together
co-operatively. Although their previous house had been a "nightmare"
they now have a "nice spacious house" and a "lovely
big garden" and are "very happy" with their accommodation.
One-off grants
Even when families are able to access one-off
grants (and these were very welcome), they point out that they
don't take account of the unending wear and tear on furniture,
and constant need to replace and fix things. Applications seem
to have an infinitely greater chance of success if made—for
example—by a social worker.
Non-disabled siblings
The families who also have non-disabled children
fear that they "miss out the most" and find prioritising
expenditure on a tight budget a constant worry. As one mother
put it, she was often in a situation where "Peter has to
be robbed to pay Paul." The mothers make sacrifices because
the "children must come first."
Additional Expenses
— Transport: Two families report
that because they need a "people carrier" they have
to pay a larger deposit of £2,000+ to Mobility. One mother
explains she has to "put so much away every month to have
ready when it's renewed every three years." Given that savings
may count against an application for Social Fund, or affect income
support, this is a possible source of concern.
— Special equipment/adaptations:
These include: putting locks on all pieces of kitchen equipment,
windows, doors and garden gates; high garden fences; "stable"
doors on all the bedrooms that prevented the children "escaping"
but allow their mother to check on them; the installation of special
low pressure taps in the bathroom "to avoid it flooding too
quickly"; cctv cameras for night-time epilepsy and sleepwalking;
waterbeds and "special chairs" because of perpetual
bedwetting and nose bleeds. Although one family received a grant
from a charity for a computer (which was a "God-send"),
they still had to buy a sloping board, computer table and chair
for use at home, £14 a year insurance and £20 a month
to get 24 hour BT internet access. "It's impossible to go
to the library . . ."
— Hospital visits: "everything
costs more with hospital visits" particularly when the child
stays in for a protracted period, and the mother stays with them.
Transport back and forwards to see the other children, financing
additional caring and domestic support, parking, toiletries, pyjama's,
food for the parent staying with the child—the list is endless
and "The hospital provides nothing." One family with
five children have recently flown a parent over from India to
help out with while the mother stayed with her older son during
a four week hospital stay. "I don't know what I'm going to
do . . . my other son has to go into hospital for the same operation
in six months." The family have been turned down for a one-off
payment from the Social Fund to cover these additional expenses
but do not have time to appeal.
— Heating: "Everything
is more of a problem in the winter" when "keeping the
family warm and occupied becomes more difficult."
— Laundry: "the washing
machine is on at least five times a day and that's on a good day!"
— Replacement of furniture, clothing
and household equipment: One mother explains that "With
three wheelchairs in the house, things get bashed and broken."
They "crash against doors and furniture and scrape the paintwork."
Another mother reports that her autistic sons are very destructive
and things constantly need replacing—including clothes.
— Clothing: Special clothing
is usually required, which needs to be of high quality and yet
replaced regularly. Two of the families bought special shoes from
a firm in Sheffield that cost £142. ("I need two pairs
for both the girls every year.") One mother comments "I
don't buy anything with buttons or fasteners."
— Special diet: One child—who
has allergic reactions—can only have organic food, and can't
have nuts, or lemons, or additives etc. Another mother buys bottled
water with additional calcium for her children. "I buy tons
and tons of water."
— Play, toys, leisure: Toys
have to be "chunky, safe and usable." Families can't
make do with cheap options. "I've got about 400 videos because
they can't go the pictures." Although computers and televisions
are viewed as essential, one mother comments that her perpetually
housebound children "get bored very easily, but they need
more than the television and the computer". She and her husband
are often too exhausted to entertain them. The mothers feel that
the children are "harder to occupy as they get older".
They "can't go swimming, or clubbing, to the park . . ."
Sharing seems to be more difficult to organise with two disabled
children. "Because they can't get out, the girls are very
jealous of their space and things . . . anyway, they like different
things." One mother comments that although both her boys
have autism, they are quite different. Another family had to buy
an extra television for their eldest, non-disabled child, because
their two autistic sons repeatedly watch the same video.
— Holidays: "Oh forget
it, forget it! We don't go on holidays, we go on military manoeuvres."
One family reports that they have never had a holiday. The closest
thing to a break is going shopping on their own "for an hour",
which they are only able to do because the youngest child recently
started school. "Even that was good, just to be alone together."
CONCLUSION
It seems that the failure of the social security
system to recognise the cumulative impact of caring for two or
more severely disabled children militates against the effective
targeting of financial support. In her report on families with
two or more disabled children, Rosemary Tozer comments that "Sometimes
it is the combination of the children's personalities and their
differing needs, rather than their individual impairments, which
are particularly difficult for them and their families to manage."
[218]
A benefit system that focuses on disparate individuals and fails
to take a holistic view of a family's needs ignores a vast sea
of hidden and unmet financial needs.
If you would like to participate in our on-going
study on the extra costs incurred by families with two or more
disabled children, you can download further details and a questionnaire
from our website (www.disabilityalliance.org\cost.htm)
17 September 2003
A briefing on research findings on families
with disabled children can also be downloaded from the website.
214 See, for example, Lawson, Dot Complex numbers:
Families with more than one disabled child (Social Policy Research
Unit, 1998) and Tozer, Rosemary At the double: Supporting families
with two or more severely disabled children (National Children's
Bureau supported by Joseph Rowntree Foundation, 1999). Back
215
See, for example, Chamba, R, Adham, W, Hirst, M, Lawton, D, Beresford,
B. On the edge: Minority ethnic families caring for a severely
disabled child (Policy Press, supported by Joseph Rowntree Foundation,
1999) and Roberts, Keri, Lawton, Dot. Reaching its target? Disability
living allowance for children (Social Policy Report No 9, Social
Policy Research Unit, University of York, 1999). Back
216
Supporting disabled children and their families (Joseph Rowntree
Foundations Findings Ref N79, November 1999). Back
217
Sharma, Neera Still Missing Out? Ending poverty and social exclusion:
messages to government from families with disabled children (Barnado's,
2002). Back
218
Tozer, R At the double. Back
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