Select Committee on Work and Pensions Written Evidence

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


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.


  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.


  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.


  Our preliminary findings are summarised.


  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."


  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."


  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 . . .".


  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.


  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."


  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 (\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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