Further memorandum submitted by the Disability
Alliance (CP 18B)
FAMILIES WITH TWO OR MORE DISABLED CHILDREN—CASE
STUDIES
We have recently conducted a small survey of
families with two or more disabled children. In-depth interviews
have been conducted with a small number of families, and detailed
questionnaires received from others.
A number of issues are emerging from our research,
some of which are described below. (Other issues were discussed
in the winter 2002 edition of the Bulletin.)
WORK
Although mothers bitterly resent being told
they are not working, most would like some kind of paid employment
outside the home for a few hours a week. However, they are unable
to work because of their caring responsibilities, the paucity
of suitable childcare, and anxiety about losing benefits. Although
extra money would clearly be very welcome, most of the mothers
comment that they would love to work in order "to be my own
person for a couple of hours a day" and comment that "it
would give me a chance to breath" or might "help with
my depression" etc.
One mother comments that it is "extremely
difficult, if not impossible to find a job that fits in with three
disabled children. The main difficulty is finding childcare. The
second is the number of appointments (psychologists, speech and
language therapy, school meetings, doctors etc . . .) multiplied
by three . . ." Another comments "My eldest son was
excluded from his mainstream school in January and was out of
school for 4 months. What would I have done if in work or on my
own?"
Although a number of fathers in our survey worked,
combining paid employment alongside caring responsibilities exacts
a huge toll on their health. One mother comments "My husband
would like to reduce his hours to help but we can't afford for
him to do so."
Another father is learning English in the hope
that he can get a part-time job "but his studies are constantly
interrupted by hospital appointments." Another father was
only able to return to full-time work recently when the family
was provided with a primary carer as well as two home-helps who
come every morning to help with their two severely disabled sons.
CARING
One mother comments "If there's one thing
makes me furious is when people say caring isn't working . . .
I get 52p an hour. A friend who works in an old peoples"
home gets £6.00 an hour . . . she says "you shouldn't
do it" to me, but they're my kids . . ." Other mothers
agree. One writes "As carers of two children with disabilities
we feel undervalued, underpaid, stressed. The Government don't
care; as far as they are concerned carers are a form of cheap
labour. We are sick of being labelled "unemployed" and
continually told there is no such job as a "carer".
Another comments "We look after them 24 hours a day—they're
not toys that you can turn on in the morning, and switch off at
night and put in a cupboard."
INFORMATION AND
SUPPORT
Families are "constantly fighting"
to get the information and support they need. The questionnaires
are littered with comments like "you have to fight for the
basics'; "have fought for many changes at the school."
"We have just started our fight to get our bathroom changed
to suit children's needs. Yes a fight. Everything seems to come
down to this." "If you cope, the local social services
say—fine, you're coping—but if you don't cope, you're
worried they'll come and take your children—it's a vicious
circle."
Accessing information about benefits is clearly
difficult. One mother comments "You wouldn't believe how
many parents don't realise they can get DLA . . . or the blue
badge." Families who do get DLA comment on discrepancies
within the system. One family with two autistic boys received
the middle rate for her older son and the higher rate for her
second son, even though he had lesser needs. "But I'm not
going to complain . . . a review might reduce both their rates."
SOCIAL FUND
Families are constantly being turned down by
the Social Fund, but an endless round of hospital admissions and
appointments means they often can't appeal within the time limit.
Many families are therefore forced to turn to the Family Fund,
or voluntary sector organisations for additional support, but
comment that they are "sick to death of having to beg
voluntary sector organisations for money we should get as a matter
of right from the state."
BLUE BADGE
A "postcode lottery" seems to operate.
One mother who applied for a blue badge for her deaf child and
her autistic daughter was told by her local authority that "no
deaf or autistic child has a blue badge" and that "furthermore
if they heard of anyone who did, he would take the badge away."
She adds "because it's often safer to carry him on my hip,
I've got a bad back myself . . . I could do with a family badge."
Another mother comments "Although we were lucky to get a
blue badge in the last two years, I feel that families with one
or more disabled child should be given a "family blue badge"
automatically. She adds "we often have to drive to places
where others would be able to walk and the cost of parking is
a big issue . . ."
DIAGNOSIS
One mother—who was accused of having Munchausen
syndrome because her two daughters have an extremely rare condition—comments
that "A lot of parents of children with rare diseases have
real problems getting someone to recognise there's something wrong."
One mother with two profoundly deaf children and daughter with
"severe behavioural problems" is desperate for a firm
diagnosis "because the general public might be a bit more
understanding."
HOSPITAL APPOINTMENTS
One mother comments "Because I have three
children with disabilities, they've all got different appointment
times, so when I take one child for an appointment to the hospital,
I have to pay someone to look after my other children because
my husband (who is severely disabled) can't do it. They make no
allowances for that, none whatsoever. I have to pay somebody to
get a child into a wheelchair, get them ready for school. Before
they get my son (who is hyperactive) ready they have to catch
him first . . . With six monthly reviews I sometimes have four
or five appointments in a very short space. That does hammer you."
Other mothers agree. "Sometimes I have
three or four appointments in a week. And recently I had to refuse
a course of speech therapy for my youngest daughter because the
times offered did not fit in with the boys. She will have to wait
until September at least before being offered another course."
HOSPITAL COSTS
"Everything costs more with hospital visits".
One mother with two teenage daughters with severe mobility problems
has a six year old son is who in and out of hospital "sometimes
twice a month" because of allergic reactions. She comments
that when the girls are admitted to hospital, they tend to go
in for three or four weeks, during which time she stays with them.
Her disabled husband can't drive, so she has to drive backwards
and forwards, which means extra for petrol and parking. She pays
somebody to help with the other children in the mornings, and
to cook a meal in the evenings. Sometimes the family can't afford
to pay for care twice a day, so the mother will drive home to
get the children ready for school, and then return to the hospital.
Although the hospital is reliant upon her to help care for her
son, it "provides nothing!'. She has to provide her own food.
Another family poignantly describe the stress
and strain of a recent one-month hospital admission for their
eldest son during which time he begged his mother to stay with
him. The family do not have a car, and travel backwards and forwards
from their home in east London to the hospital in Stanmore on
public transport. The mother returns home every two to three days
to sort out clothing, food, uniforms, ironing etc. for the younger
children. Her husband has to balance constant visits the hospital
to bring food, with his caring responsibilities back home. The
family flew his mother over from India to help out with the younger
children, but she cannot carry her 13-year old grand-daughter
up and down stairs to get her ready for school in the mornings
and up to bed in the evenings (a process that takes two-three
hours every day). The family—who have recently been turned
down by the Social Fund for a grant to cover additional costs—are
desperate. "I don't know what I'm going to do." They
will go through exactly the same process again in six month's
time, when their daughter will need the same operation. Things
will not get easier for the family. The children's mobility will
never get any better, but "hopefully the operation will take
the pressure off their lungs and kidneys, improve breathing and
help them sit up a bit straighter."
FAMILY BREAKDOWN/POOR
HEALTH
Caring for disabled children "puts a strain
on a marriage" and for many of the parents "poor health"—due
to stress, prolonged lack of sleep and a poor diet—is a
big issue. Mothers eat "on the run" and worry that the
impact of stress and strain on their health will undermine their
ability to care for their children. One mother with two seriously
disabled daughters; and a hyperactive son with health problems
comment's "a couple of months ago I had all three down at
the same time. My doctor put me on anti-depressants . . . this
is my biggest nightmare. It's only happened the once—I don't
know how I would cope if it happened again . . ." "We
worry about the affect on our health. What if we do get ill, what
happens then?"
High levels of stress in a family where the
father works ("So we have more money than many others') have
"put the relationship under constant stress'. The father
takes anti-depressants and needs "constant visits to the
doctor and counselling." "There's not time to be together
as a couple, let alone as a person."
Another mother comments that she and her husband
never have an undisturbed night (they have to get up eight or
nine times a night to turn the children), and suffer from the
physical strain of carrying the children up and down the stairs.
The stress has had an impact on both their health. The mother
has asthma, and her husband has developed a stomach ulcer and
back problems. Health problems are compounded by the fact that
the parents often stint themselves on everything—food included—to
safeguard the health of their children. "We've got to put
the kids first."
CHILDCARE/RESPITE
CARE
Childcare is a perennial problem. "Nobody
will take them on unless we pay a lot of money." "Social
services, family link etc. have not found anyone to take two or
come round to baby sit two." "No babysitter can handle
two. One is hard enough." One mother is also about finding
somebody to look after her younger son who is "very hyperactive
and clingy." She comments "a childminder would batter
him!"
Another comment's that "To find suitable
childcare is almost impossible. We rely on close friends for emergencies
as they know the children and the children know them. We can't,
for example, ring an agency and get any babysitter/childminder.
We need someone who has knowledge of autism and who would get
to know the children and all the strategies we use at home."
OLDER DISABLED
CHILDREN
All of the mothers whose disabled children were
teenagers were concerned at the woeful lack of suitable teen-based
clubs or leisure activities. One mother complained that where
there is some kind of provision for disabled children, they were
all "lumped in together" even though they had very different
needs and interests. "The biggest difference for my 13 and
11 year olds would be if somebody would come and take each individual
girl to a club they liked to do the things they like so that I
could breath for a bit."
Most of the parents feared that costs would
rise as the children got older. The sort of short-term, additional
costs that are triggered by a new baby (nappies, special foods,
toys to entertain them at home) may continue throughout childhood—as
does the stress of caring for children 24 hours a day.
NEEDS OF
NON-DISABLED
CHILDREN SIBLINGS
The needs of non-disabled children is a constant
source of anxiety and guilt. One mother comments that she feels
"constantly guilty and worried" about her younger children,
but her two disabled children "have to come first'. Another
mother who has two autistic sons, comments of her third child
"I am constantly beating myself up about this . . . he is
very emotional, very sensitive. When he want to be, he's so good
with them but there are so many things we can't do, places we
can't go . . ."
When Asked "What Would be of Greatest Financial
Help to Your Family?" The Following Responses Were Provided.
— "The family needs more financial
support and better services, better transport."
— "Improved benefits, a social
fund/grants available for people like myself who are coping without
much help—and to have someone in Support Services who understands
every case is different!"
— "We missed the deadline for
the Motability car because the appeal (for DLA) took 12 months
to be heard."
— "Access to grants would enable
us to afford things like a new cooker which would be safer, more
substantial safety things and also give us the money to employ
a nanny or some other help so that we could have some respite."
— "Help! financial and respite.
Problems with clubs, activities, supervision (no carer) wills,
trust, insurance, child bond savings"
— "We'd like to take the kids
out somewhere as a family—we can't even do that . . . My
children should be enjoying themselves." "In an ideal
world my husband shouldn't have to work, because we need two full-time
carers."
— "The biggest difference would
be accessibility to childcare "We're living on the edge and
are constantly stressed by money shortages."
17 September 2003
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