Select Committee on Work and Pensions Written Evidence

Further memorandum submitted by the Disability Alliance (CP 18B)


  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.)


  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.


  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."


  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."


  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."


  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 . . ."


  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."


  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."


  "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."


  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 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."


  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.


  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!"

    —  "Better childcare."

    —  "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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