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The impact of childhooddisability on family life

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Citation: DOBSON, MIDDLETON and BEARDSWORTH, 2001. The impactof childhood disability on family life. York : Joseph Rowntree Foundation

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The impact of childhooddisability on family life

Barbara Dobson, Sue Middleton and Alan Beardsworth

The Joseph Rowntree Foundation has supported this project as part of its programme ofresearch and innovative development projects, which it hopes will be of value to policymakers and practitioners. The facts presented and views expressed in this report are,however, those of the authors and not necessarily those of the Foundation.

© Joseph Rowntree Foundation 2001

All rights reserved.

Published for the Joseph Rowntree Foundation by YPS

ISBN 1 84263 029 6

Prepared and printed by:York Publishing Services Ltd64 Hallfield RoadLayerthorpeYork YO31 7ZQTel: 01904 430033; Fax: 01904 430868; E-mail: orders@yps,ymn.co.uk

Contents

PageAcknowledgements iv

1 Introduction 1The aim of the study 1Instrumentation used 2The sample 3Selection of areas 4Case study children 4Profile of the families who participated in the study 5

2 Spending by parents 8Spending 8Spending and lone parents 11Severity of disability 12Income and spending 13Spending and age 13Comparison of parental spending on disabled and non-disabled children 15New or second-hand 16Support from family, friends and organisations 17Summary 17

3 Spending and the budget standards 19Spending deficit 19Average spending and the budget standards by age 20Spending priorities 20Benefits for children with disabilities 21Benefit adequacy 23Summary 24

4 A new paradigm of family life 25Reconstructing family life 25Public entity and invisible family 28Parent or carer? 29Reconstructing relationships 30

5 Conclusions 36

Notes 37Bibliography 38Appendix 1: The research design 39Appendix 2: Case studies 42

First and foremost, we would like to thank allthe parents and children who took part in theoriginal study, Paying to Care: The Cost of

Childhood Disability (Dobson and Middleton,1998), as their contributions and diligence incompleting the questionnaires and diaries madethis report possible. All the families whoparticipated in the project live very pressuredlives with constant demands on their limitedtime and energy. Yet, despite these constraints,all were willing to co-operate and support thisstudy in the hope that it will make a realdifference, if not to their lives, to the lives ofother parents and children who will inevitablycome after them. Parents hope that, if they telltheir story, other people will understand thereality of their everyday lives and will workwith them to help them care for their children.

Acknowledgements

Thanks also to the Joseph RowntreeFoundation who funded and supported thisstudy, particularly to Barbara Ballard, PrincipalResearch Officer; our Advisory Group who gaveencouragement and words of wisdom; RogerMattingly, Chief Executive of The Family FundTrust; and Dot Lawton, at the Social PolicyResearch Unit, University of York, whoprovided the sample and made the initialcontact with the families who took part in thisresearch. Jean Rushton and Rosie Porter thendistributed the necessary questionnaires anddiaries to the families as well as arranging ourmeetings. Finally, thanks to our secretarialsupport team, our colleagues within the Centrefor Research in Social Policy and our families fortheir help and patience.

iv

1

This is the second report of a study funded bythe Joseph Rowntree Foundation that exploredthe costs to parents of bringing up a child with asevere disability. The first report, Paying to Care

(Dobson and Middleton, 1998), described aminimum budget standard, which is theminimum amount that parents believed to benecessary to bring up a child with severedisabilities. This report describes the actualspending patterns of parents on 182 childrenwith severe disabilities, and presents a detailedexamination of how much parents actuallyspend on bringing up a severely disabled child.Fieldwork was conducted during 1997–98 andso all figures presented have been up-rated to2000 by the Retail Price Index.

The financial costs experienced by parentsare, of course, only one element of bringing up adisabled child. Throughout this study parentsspoke about the love and joy they received fromtheir child. They stressed that it was not, as oneparent said, ‘just doom and gloom’, nor was itabout only giving. But parents also talked aboutthe emotional costs and described the processesby which they, their families and friends reactedand adjusted to the needs of their child. Thedata suggests that as parents struggle toreconcile costs with needs they must alsoconfront new and unexpected experiences andin so doing construct a new paradigm of familylife. Within this new paradigm, relationships,obligations, aspirations, responsibilities, as wellas one’s sense of self, have to be redefined.

Chapter 1 provides some backgroundinformation about the study and the researchdesign. It also contains a brief description of theparticipants. Chapter 2 describes the actualspending patterns of parents and comparesthese with the spending of parents whose

children did not have a disability. The data onchildren without disabilities was collected viathe Small Fortunes Survey (Middleton et al.,1997). This study, funded by the JosephRowntree Foundation, was the first nationalsurvey on expenditures on children. Chapter 3compares spending data with the budgetstandards to explore whether severely disabledchildren received what their parents deemedessential for children like them. It also examinesthe budget standards compared with benefitincome. Chapter 4 describes some of theemotional costs of bringing up disabledchildren, and suggests that parents were oftencompelled to reconstruct and renegotiate everyaspect of their lives.

The aim of the study

In 1997, the Joseph Rowntree Foundationfunded a study to explore the additionalfinancial costs of childhood disability, as well asrelated issues, and to develop minimum budgetstandards.1 Budget standards attempt todetermine a list of necessities that are essentialto maintain a given standard of living. Inprevious studies, panels of experts produced abudget standard by drawing up lists ofnecessary items, which were then costed as aweekly basket of goods and services. The priceof the basket represents the costs to a family ofachieving a pre-determined standard of living(Dowler and Dobson, 1997). This process wasmodified in the present study, in that the‘experts’ were parents of children with severedisabilities as they, better than anyone else,understood both their own and their child’sneeds and priorities. It was parents whodiscussed, negotiated and agreed the minimum

1 Introduction

2

The impact of childhood disability on family life

essential needs of severely disabled childrenand drew up the budget standard. Thisvariation of the budget standard approach isreferred to as ‘consensual budget standards’.

Parents constructed the minimum essentialbudget standards in a total of 36 focus groups.The focus groups took place in three stages:orientation, task and check back groups (for adetailed description of the research process, seeAppendix 1). The main aim of the focus groupswas to bring parents together to agree the itemsthat disabled children needed and, during thefinal stages of the research, to discuss theadditional costs. However, the focus groups alsoallowed other aspects of bringing up a childwith a severe disability to be discussed. For thisreport, transcripts from the group discussionswere analysed so as to explore the effect of achild’s disability on particular dimensions offamily life. For example, parents’ discussionsprovided invaluable insights as to how theynegotiated new relationships with health andsocial professionals and, equally important, howthey renegotiated existing relationships withfamily and friends.

Prior to attending the task and check backgroups, parents completed a one-weekconsumption and expenditure diary about thedisabled child, an inventory of the child’spossessions, and a self-completionquestionnaire about spending on items andactivities which are likely to take place lessregularly than once a week. Thisinstrumentation is described below. The datafrom this instrumentation was coded andanalysed, and provides the estimates of parentalspending used in this report.

Instrumentation used

Recruitment questionnaire

A total of 272 recruitment questionnaires wereadministered to parents. These questionnairescollected information about the socio-demographic and economic circumstances ofthe family. The questionnaires collected data onhousehold composition, housing tenure andtype, ownership of certain consumer durableitems (taken from Smyth and Robus, 1989),household income, benefit receipt, maritalstatus and social class.

Inventories

The inventories were used to record informationabout items owned by the child or that s/he hadaccess to. As the inventories took someconsiderable time to do, parents completedeither the clothes or the possessions inventory.The inventories were developed from thoseused in the Small Fortunes project but amendedaccording to the suggestions of parents in theorientation groups. In the inventories, theparent was asked to write in the number of theitems their child possessed. They were thenasked about the most recent item acquired bytheir child – whether it was new, second-hand,handed on or on loan and who gave the item totheir child.

Diaries and self-completion questionnaires

A total of 182 parents completed a diary forseven consecutive days relating to spending ontheir child with disabilities. Each diary recordedinformation about spending on school and non-school activities, medical items, phone calls

3

Introduction

made by parent or child and other possessions.Although the diaries also recorded informationabout the foods eaten by the child, this data hasnot been included as it was not possible to costthis element of parents’ spending.

A self-completion questionnaire wasincluded at the back of the diaries. Thiscollected information about actual spending onthe following: outings; day-trips and weekendsaway; holidays; birthdays; Christmas; respitecare; adaptations; car ownership; child’ssavings; laundry; fuel and heating bills.

Children’s questionnaire

A questionnaire was administered wheneverpossible to children aged over five years and atotal of 42 were successfully completed. Thequestionnaire was an amended version of thatused in the Small Fortunes study. It exploredwhether children received pocket money, if theyand their families could afford to buy the itemsthey wanted, what the child did if they wererefused items and the reasons for this. It alsoexplored if children did not ask for thingsbecause they thought their families could notafford it.

The sample

Parents were identified via the Family FundTrust (FFT) database. The Family Fund Trust isan independent trust set up by Government in1973 and entirely funded by them through theDepartment of Health. It currently allocatesapproximately 20 million pounds per year ingrants to families with children with severedisabilities. The FFT was established to helpfamilies with modest means, and appliesincome and savings guidelines to applications.

At the time of this study these guidelines were£18,800 income per year and £8,000 savings.

It is estimated that the FFT has had contactwith between 60 and 70 per cent of all familieswith severely disabled children in Britain and is,therefore, the best available sampling frame. Asample of families in four different areas wasdrawn from the database and a letter was sentby the FFT to each family asking if they wereprepared to participate in the research. A list ofnames and addresses of those who had agreedwas then passed to the researchers and,subsequently, to professional recruiters whocontacted parents and distributed theinstrumentation.

The basic classification of disabilities used bythe FFT recognises over 60 different conditions.It was neither possible nor desirable to establishminimum essential budget standards for eachone of these conditions. Furthermore, researchon the database showed that the majority ofchildren have multiple disabilities. For example,a child with cerebral palsy, as well as havingproblems moving, may also be incontinent, havedifficulty speaking, etc. Therefore the disabilitygroups were condensed into the following threemain disabling conditions:

• restrictions on movement (MobilityDisability: e.g. cerebral palsy, spinabifida)

• sensory disablement (SensoryImpairment: e.g. deaf, blind)

• traumatic intermittent conditions(Traumatic/Intermittent Disability: severeasthma, epilepsy, autism).

The rationale for the separation into differentdisability categories was to try and contain the

4


discussion, and to focus on the extra costsrelated to the type and severity of a particulardisability. This approach had limited success asthe severity of the children’s disabilities wassuch that the disabilities spanned the threecategories and some could have been allocatedto any one of the above groups. This wasespecially true of the children in the older agegroups. Parents explained this by saying thatthe assessment by the FFT was several yearsold; their children’s conditions had changedduring this time – some had improved but themajority had developed (or were diagnosedwith) more complex health and social careneeds. This finding in itself did not have a majorimpact on the study because of the use of casestudies, which are discussed below.

The groups were also divided according tothe age group of the child. The age groupschosen were identified in previous work asreflecting the main changes in a child’s lifearound school, which might be anticipated tohave a significant effect on parents’ expenditurepatterns (Middleton et al., 1994). The age groupschosen were birth to 5, 6 to 10 and 11 to 16years. In reality, it was possible to recruit only afew parents who had a child under 2 years ofage. The explanation for this, according toparents, is the length of time taken to receive adiagnosis and also to discover organisationssuch as the FFT.

The groups were mixed according to socialclass, family composition, gender and birthorder of the child. While ethnicity was notincluded as a specific criterion, slightly less than10 per cent of families participating in theresearch came from differing ethnic minorities.

Selection of areas

The four areas chosen were Leicestershire,Derbyshire, Birmingham and Nottinghamshire.The rationale for area selection was twofold.First, areas were needed in which the number offamilies with severely disabled children wassufficiently large and geographicallyconcentrated to enable groups to be puttogether. Second, we wished to include areaswith differing local government structures,which might have an impact on the experiencesin accessing services.

Case study children

Descriptions of three children were developedinto case studies to represent each of the maindisabling conditions. The case studies weredeveloped by the orientation groups, whichconsisted of the first nine focus groups. Thesecase studies were then used in the task andcheck back groups to focus discussion awayfrom the needs of participants’ own childrenand towards the minimum essential extra costsof bringing up a child with a particularcombination of disabilities. This was importantto ensure standardisation of the budgetsthroughout the groups and to avoid thetemptation for parents to construct individualbudgets for their own child. To explore whethercosts varied in relation to age, the case studieswere ‘aged’. For example, the groups wheremobility was the main disabling conditiondiscussed Karen aged 4, 9 and 15 years (seeAppendix 2 for a detailed description of the casestudy children).

5

Introduction

Profile of the families who participated in

the study

Two-hundred-and-seventy-three parents whohad responsibility for the day-to-day care of achild with severe disabilities took part in thisstudy. Of these, 200 participated in the task andcheck back phases, which drew up the budgetstandards. One-hundred-and-eighty-two ofthese parents completed the expenditure andconsumption diaries, which equates with a 91per cent response rate.

Analysis of the characteristics of the overallsample showed it to be representative offamilies registered with the FFT, and there is noreason to suggest that the priorities andconcerns of the families in this study areradically different from others registered withthe FFT.2 In brief:

• The participants were mostly women (92per cent). In other words, 8 per cent ofparticipants were the fathers of childrenwith disabilities. Whilst still very small,the numbers of fathers claiming ‘to havethe main day-to-day responsibility for thecare of the child’ was far higher in thisstudy than in earlier work with parents ofchildren without disabilities.

• The average age of participants was 36years. The youngest was 20 years of ageand the oldest parent was 70 years old.

• Three-quarters of participants did notwork (75 per cent), 18 per cent workedpart time with only 7 per cent in full-timework. In other words, only one-quarter ofparticipants were in some kind of paidemployment.

• Seventy-three per cent of participants hada partner. Less than 60 per cent ofpartners worked on a full-time basis.

• One-fifth of parents had only one child,two-fifths had two children, one-quarterhad three children and 16 per cent hadfour or more children.

• Half of the families rented theiraccommodation, 40 per cent from theirlocal council. Forty-six per cent of familiesowned their own homes. The vastmajority (93 per cent) lived in houses,rather than flats.

• Approximately half of the families werein receipt of Income Support.

• Nine out of ten families were claimingDisability Living Allowance and four-fifths were in receipt of Invalid CareAllowance. However, 3 per cent offamilies received no other benefit apartfrom Child Benefit.

• The majority of participants were in thelower socio-economic groups.

• Approximately half the children had theirown savings; a third saved their money ina building society; 27 per cent savedusing a piggy bank; 15 per cent had abank account; and 7 per cent had a postoffice savings account.

• Almost half of school-aged childrenattended a special school.

The above findings demonstrate that thefamilies who participated in this study were lessaffluent than the population as a whole. They

6


were less likely to own their homes, more likelyto be on Income Support and less likely to haveat least one adult in full-time work (GeneralHousehold Survey, 1994). There were more loneparents than in the population as a whole. Tworeasons for this lower socio-economic profile arepossible. First, the Family Fund Trust appliesincome and savings guidelines to grantapplications. As stated above, in 1997/98 whenthis study was conducted, these were incomesof below £18,800 per annum and savings of lessthan £8,000. Whilst the database includeshigher-income applicants who were turneddown as a result of the income and savingsguidelines, it may be that, in general, fewaffluent families apply to the Trust in the firstplace and so would be under-represented.Second, the relatively low socio-economicprofile may be the result of having a child witha disability. The socio-economic profile offamilies in the Family Fund Trust database maybe genuinely representative of all families ofdisabled children.

The OPCS (Office of Population Censusesand Surveys) study showed that both mothersand fathers of disabled children were less likelyto work and, when they did, their earnings werelower than for parents as a whole (Symth andRobus, 1989). This finding is supported by morerecent work which has found that both parents,or even one parent, may find it difficult to take,or sustain, employment given the demands ofcaring for a child with severe disabilities,particularly when there are other children to belooked after (Kagan et al., 1998):

You can’t work when you’ve got a child like ours,it’s just not possible. I tried and you always needtime off when they’re ill and they’re ill more thannormal children, then you’ve got all theappointments as well, but the killer is theholidays, what do you do with them then. If youcan find someone to have them then it costs youmore because they can have less of them, kids Imean, because of the ratios and it ends upcosting you more so that it’s not worth workingeven if you’d got someone, a boss who’dunderstand.(Task Group, Sensory Impairment, 11–16 years)3

However, although the families in this studywere less affluent than the population as awhole as measured by housing tenure, labourmarket activity and benefit receipt, they werenot necessarily less affluent on other measures.

Figure 1 compares patterns of ownership ofselected consumer durables by families in thisresearch with those for the population as awhole taken from the General HouseholdSurvey (GHS, 1994). Families with disabledchildren were more likely than the populationas a whole to own each of the consumerdurables, with the exception of a dishwasherand, although the difference is small, centralheating. Evidence from the focus groupsconfirmed that, with the exception of adishwasher, these items were regarded asabsolutely essential by the parents of childrenwith disabilities. The difference in ownershiprates is, therefore, explained not by relativeaffluence of the families in our study, but by thepresence of a disabled child.

7

Introduction

Further analysis showed that ownership ofsome of these items varied among our families.Lone parents were less likely to own a car (53per cent) than two-parent families (86 per cent)and less likely to live a in a house with centralheating (71 per cent compared with 86 per cent).

These items were described as vitally importantin enabling parents to continue to care for theirchildren with disabilities, yet it seems thatsignificant numbers of lone parents are havingto manage without.

aCCD refers to the original study, Paying to Care: The Cost of Childhood Disability (Dobson andMiddleton, 1998).bCar not included in the OPCS survey.

Per

cen

t

120

100

80

60

40

20

0TV

Video

Frid

ge/

freez

er

Was

hing

mac

hine

Tum

ble

drier

Dishwas

her

Telep

hone

Centra

l

heatin

g Carb

GHS: 1994OPCS: 1984

CCD: 1998

Figure 1 Ownership of consumer durable items: OPCS; GHS; and CCDa

1989

8

On returning the diaries, parents were keen tostress that spending varied according to thehealth of their child so that during the datacollection period some had spent less than usualand some more. For example, some parentsreported that their child had been ill and hadnot been able to go out or to participate inactivities. Other parents reported that theirspending, especially on activities during thedata collection period, was higher as they weretaking advantage of the fact that their child waswell and able to do things:

All children rule the roost but even more if theyare like ours [have a severe disability]. You have towork with them and change your plans to fit withhow they are. If he isn’t well you can’t go out;we’ve even missed our holiday because he was illat the last moment. So, when he is able to dothings, we do them and I worry about the moneylater because I think to myself that you don’tknow the next time he will be up to it.(Orientation Group, Mobility Disability, 6–11 years)

Throughout this chapter, average spendingfigures are described. This will help to ‘iron out’some of the discrepancies between those parentswho had spent more and those who had spentless during the diary week. In addition, allspending data has been carefully examined anda small number of very large items that weresignificantly distorting the average spendingfigures have been removed.

Spending1

A total of 182 parents recorded their spendingon goods and services for their child over aseven-day period; of these, 68 per cent of thechildren were of school age and 32 per cent

were aged under 5 years.Parents spent on average £65.51 per week.

As 85 per cent of families had an income of £300or less per week, spending this amount on theirdisabled child accounted for at least one-fifth oftotal family income. It should be borne in mindthat the average spending figure does notinclude spending on food for this child and so isan under-estimate of weekly spending.

Spending on everyday items accounted foralmost two-thirds of parental spending.Everyday items included activities, clothes,toiletries, medical items and children’spossessions. All parents regarded these items asessential and shared the experiences of thismother who said:

I’m careful with money. I know I don’t waste it. Ionly buy what we need but Helen [disabled child]needs more than her sister, more nappies, moreclothes, more creams, more things to occupy herbecause she is stuck in here with me all the time.I have two children and I know it costs more, a lotmore for Helen and there is nothing you can do.You just have to pay it.(Task Group, Sensory Impairment, birth to 5 years)

In order to allow for this level of spending,parents developed financial coping strategies.For example, in the group discussions, parentsspoke of: going without; relying on help fromfamilies when it was available; and going intodebt. One mother organised regular car bootsales, as this was the only way she could find toafford the items her child needed. This requireda considerable amount of time as she had tocollect and sort things to sell, go to the car bootsale and clear up afterwards. While the majorityof parents were creative and careful moneymanagers, achieving the required results took

2 Spending by parents

9

Spending by parents

time and energy – two things that for manyparents were in even shorter supply thanmoney. Given the high proportion of theirincome required to meet the needs of their child,it is not surprising that one mother said:

When I tell people how much I pay out a weekthey look at me as if I’m mad. They think we’vegot loads of money and we’re living a life ofluxury and go on fancy holidays. Then they comeand see where we live and I tell them we haven’thad a holiday for almost ten years. I know somedon’t believe me but it’s true. All my money goeson what we need and when it doesn’t stretch Iget into more debt because there is nothing else Ican do.(Orientation Group, Mobility Disability, 11–16 years)

Figure 2 indicates that the three main itemsof expenditure were children’s possessions (anaverage of £13.50 per week), clothes (an averageof £12.86 per week) and non-school activities(£12.37). Parents spent least on birthdays (anaverage of £2.18 per week) and Christmas (anaverage of £3.25 per week). Parents were aware

that they spent what they regarded as aconsiderable amount of money on day-to-dayitems but they insisted that the reasons for thiswere simple; either their child needed more of aparticular item and/or it was expensive.Parents’ explanations for their level of spendingon possessions, clothes and non-school activitiesare discussed below.

Children’s possessions

Children’s possessions include toys, books andgames as well as videos, computers andspecialist toys and, as mentioned above, parentsspent on average £13.50 per week on theseitems. There were a number of reasons for this.First, especially when the child was diagnosed,parents were desperate to find things that mighthelp their child and they spent more on specialtoys, games and books. Second, there was anadditional cost as parents found things thattheir child could use and enjoy, and that lasted.For example, learning the type of buttons orswitches a child could operate took time andcost money:

Figure 2 Average weekly spending

£s per week

Clothes

0 2 4 6 8 10 12 14

Laundry

Toiletries

Medical

Children’s possessions

Non-school activities

School activities

Christmas

Birthdays

Holidays

10


You have to stop yourself from only buying toysthat will help them to do something. They’re kidsand at the end of the day, they want to play andyou want to see them happy.(Orientation Group, Sensory Impairment, 6–10years)

Third, parents were often unable to borrowor share toys with family or friends and had tobuy more themselves:

It’s hard to borrow things from other peoplebecause they end up wrecking it, you just can’tborrow things.(Check Back Group, Mobility Disability, birth to 5years)

Fourth, as a child with a severe disabilitywas less likely to play with friends and morelikely to be on their own than a child without adisability, there was a greater need to findsomething to occupy them. Finally, specialisttoys, games and books that were appropriate fordisabled children cost more. For example, asingle book for a child with a visual impairmentcosts somewhere in the region of £10.

When the extra time that children with asevere disability spend at home due to illness isadded to these other factors, the relatively highlevel of spending is understandable. Forexample, some parents rented an extra one ortwo videos a week, especially when the childwas ill and at home. Also, children withbehavioural difficulties and autism oftenwatched the same videos over and over again,and parents had no alternative but to buy theseoutright.

Clothes

Parents spent on average £12.86 per week onclothes. Many disabled children need more

clothes to allow for extra changes, whether theresult of incontinence, spillages or damage.Parents frequently sent spare sets of clothes toschool/nursery/hospital/respite care and,regardless of how carefully the clothes werelabelled, they were seldom returned. Alsoclothes were washed more frequently, often at ahigher temperature because of staining, and sodid not last as long as they did for childrenwithout a disability. Finally, severely disabledchildren may inflict additional wear and tear onclothes, which means that they have to bereplaced more often. This was especially true forolder children whose clothes were often notdesigned to withstand such treatment therebypushing up the costs.

Non-school activities

An added strain on parents’ budgets waspaying for non-school activities, such asswimming, attendance at youth clubs or otherevents. These activities were regarded asessential by parents as they provided childrenwith the opportunity to go out, to make friendsand to share the experiences of non-disabledchildren. Parents spent on average £12.37 perweek on a range of activities and, while this is asignificant amount of money, often itrepresented only one activity.

Parents explained that the seemingly highcost of activities arose because the price ofparticipation is higher for disabled than for non-disabled children. Finding safe and suitableactivities was often difficult, as these tended tobe located further afield and/or were specialistand, therefore, cost more. Also, parentsexplained how having to participate in activitieswith their child increased the costs of activitiesin two ways. First, parents often had to pay for

11

Spending by parents

two tickets, one for the child and another forthemselves. Second, as they had to attend thesession, they had to pay for childcare for otherchildren, thereby further pushing up the costs:

Because there is only me, if Jenny wants to go toher swimming, I have to take her myself and thatmeans I have to pay someone to babysit theothers. Sometimes, I put the others in the crèchebut that costs as well. You see I have to help Jenget changed because the swimming teacherwon’t, the pool people aren’t allowed. So, it’s notjust the swimming itself you end up paying for,but you have to let them do it.(Task Groups, Traumatic/Intermittent Condition, 6–11 years)

Parents understood and accepted that staffof leisure facilities were not trained or insuredto provide the type of help their childrenneeded. However, they resented the fact that

they had to pay for tickets for themselves so thatthey were available to provide the helprequired. Parents were especially annoyed iftheir presence was required to overcomeinadequate facilities or poor access.

I have to go with him because there is no rampand he can’t get into the toilet.(Task Group, Sensory Impairment, 6–11 years)

Spending and lone parents

Lone parents spent substantially more than two-parent families (Figure 3); lone parents spent onaverage £82.27 per week compared with two-parent families, who spent £59.57 per week.Lone parents spent more on day-to-day itemsand activities. They spent, on average,approximately twice as much as two-parentfamilies on school activities (£10.39 and £5.21),and over one-and-a-half times as much on non-

Figure 3 Spending and family type

£s p

er w

eek

20

18

16

14

12

10

8

6

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Laundry

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School a

ctivit

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Christm

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Birthday

s

Holiday

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Two parentsLone parent

12


school activities (£16.98 and £10.57). Loneparents spent £7 more than two-parent familieson things to amuse and occupy their children,i.e. children’s possessions (£19.39 and £11.22).The only two items on which lone parents spentless than two parents were Christmas (£2.98compared with £3.34) and holidays (£3.91compared with £4.55).

The explanation for much of this extraspending by lone parents on everyday items canbe found in their descriptions in the groupdiscussions of how coping on their own meantsimple practical tasks took longer, leaving themless time to do other things. For example, oneparent described how she spent money on itemsso as to free her to do other things such ashousework or to spend time with otherchildren:

When there is only one of you, you have to beeverywhere and do everything. Doing things withJames takes longer, getting him dressed, givinghim a bath. Everything takes longer so you haveless time to do other things. If I want to do thehousework, or help the others with theirhomework, I have to make sure James is all right,and he has something to do so I buy a game,paints or a video. If he gets bored he throwsthings, or he breaks something and that ends upcosting more. It’s not his fault.(Check Back groups, Traumatic/IntermittentCondition, 11–16 years)

However, this explanation does not accountfor the difference in spending on schoolactivities by lone- and two-parent families.Spending on school items and activitiesincluded buying books, sports equipment, craftitems, parties, trips and sponsorship money. Theonly item on which two-parent families spent

more was school-books; for all other items loneparents spent more. The difference in spendingfor all items except school trips was small, thatis, less than £1. However, the difference inspending on school trips was more substantialin that lone parents spent on average £3.50 perweek more than two-parent families. The groupdiscussions do not provide a definitiveexplanation for this difference in spending.

Severity of disability

It had been anticipated that spending wouldincrease with the severity of the child’sdisability but the data suggested this was notthe case. There was no significant difference inoverall spending according to the severity of thechildren’s conditions. Parents of children withthe most severe disabilities spent on average£67.44 per week compared with £68 for childrenwhose disabilities were less severe. Whileparents of children with the most severedisabilities spent slightly more on medicalitems, toiletries and laundry, they spent less onclothes and on things to amuse and occupy theirchildren. The difference in spending on eachbudget item was small, less than £1.50. It shouldalso be remembered that all the children whoparticipated in this study had severe disabilitiesand this may explain why there was so littlevariation in spending:

I have been sitting here listening to the otherstalking and I’m surprised that even though all ourkids have different things wrong with them, it isthe same story. We’ve all got our own way ofcoping and no matter what the problem is youcan’t make do, if she needs something then youhave to get it.(Task Group, Mobility Disability, 11–16 years)

13

Spending by parents

Income and spending

All parents were adamant that they spent theamount necessary to meet the needs of theirchild, irrespective of income. To achieve this,they spent less on themselves and made othersavings to allow for the required level ofspending. However, Figure 4 shows that familieswith the highest income spent most: the 15 percent of families with incomes greater than £300per week spent on average £82.70 per week.

While the 47 per cent of families whoseweekly income was less than £200 spent onaverage £68.13 per week, it was families whoseincome was between £200 and £300 who spentleast, on average £59.13 per week. The item ofthe budget in which there was greatestdifference according to parental income wasclothes. Parents with the highest incomes spentalmost twice as much on clothes as those withthe lowest incomes. Although the group

discussions provide no exhaustive explanationfor this difference in spending, there is asuggestion that parents with higher incomesopted for better quality items of clothing, whichcost more.

Spending and age

Spending on disabled children did notnecessarily increase with the age of the child.Parents of children aged up to and including 5years were spending on average £60.18 perweek; the average spending for children agedbetween 6 and 10 years was £68.73, and for theoldest age group it was £67.61 per week. Thedifference in spending can be accounted for bythe amount parents spent on items and activitiesfor school (Figure 5). Parents of school-agedchildren spent on average an additional £9.35 perweek on these items:

Figure 4 Parental spending and income

£s p

er w

eek

25

20

15

10

5

0

£201 to £300 per weekUp to £200 per week

£300+ per week

School a

ctivit

ies

Cloth

es

Laundry

Toile

tries

Med

ical

Childre

n’s

posses

sions

Non-school

activ

ities

Christm

as

Birthday

s

Holiday

s

14


When mine went to school, it cost us more. Itwas always money for this or that.You see, because they can’t always use theequipment, you end up having to get stuff theycan manage … and it’s not always sent home, soyou need one set for school and another forhome.(Task Groups, Traumatic/Intermittent Conditions,6–11 years)

Average spending by parents of childrenaged up to 5 years was higher for laundry,toiletries, medical items, children’s possessionsand non-school activities. In the groupdiscussions, parents explained that spending onthese items was often higher as it was only withtime that parents discovered what their childneeded, which items they were able to use andwhich were of most use. These discoveries wereusually made only by trial and error, andinvolved parents buying the items and seeing

what worked. This learning curve often meantthat parents spent more.

Figure 5 shows that average spending ontoiletries and medical items decreased as thechild got older. This was not necessarily becauseparents required fewer of these items, rather, itwas only as the child got older that parents hadestablished a routine and knew what workedbest for them and their children. Added to thiswas the fact that it took parents time to find outabout the services and statutory provision thatwere available to them free of charge. Whileprofessionals informed some parents aboutstatutory service provision, others relied oninformal networks. For example, access to thisinformation usually coincided with the childgoing to school, as this was when parents metother families who knew the medical and socialservice system.

Costs for these items were also higher foryounger rather than older children because, in

Figure 5 Spending by age groups

School a

ctivit

ies

Cloth

es

£s p

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eek

16

14

12

10

8

6

4

2

0

Laundry

Toile

tries

Med

ical

Childre

n’s

posses

sions

Non-school

activ

ities

Christm

as

Birthday

s

Holiday

s

6–10 yearsBirth to 5 years

11–16 years

15

Spending by parents

order to qualify for services, parents had to havereceived a diagnosis. For some parents this wasproblematic as often it took considerable time toget a diagnosis:

I don’t know if this is standard, but I know I wastold that they [doctors] don’t like to give adiagnosis until she is older. I understand why theydo it, but everyone knew that there wassomething wrong. The waiting just meant that wehad to cope on our own and that we couldn’t gethelp. You see, on so many forms you have to beable to say my child has this disease. You needthe diagnosis.(Check Back Groups, Traumatic/IntermittentConditions, 11–16 years)

For many parents, diagnosis acted as agateway to health and social services as well asfinancial benefits.

Parents of older children spent more onclothes (the reasons for which have beendiscussed above), Christmas, birthdays andholidays. Parents of older children explainedthat they spent less on possessions because theirchildren were now at school. This meant thatparents had help to amuse, occupy andstimulate their children.

Comparison of parental spending on

disabled and non-disabled children

Relatively little is known about the nature of theadded financial costs that parents incur inbringing up a child with a severe disabilitycompared to a child who does not have adisability. In order to explore this, spending datafrom this study was examined alongside thatfrom the first national survey of spending onchildren, Small Fortunes (Middleton et al., 1997).

To enable direct comparisons between the twodata sets to be made it has been necessary todisaggregate some budget items, for example,nappies now appear as a category on their own;and to aggregate other categories such as ‘otherregular spending’, which includes children’spossessions, medical items and toiletries.

Parents of a disabled child spent on averagetwice as much on comparable categories ofexpenditure as parents whose child did nothave a disability (£65.51 and £31.22respectively), despite the fact that parents ofdisabled children have incomes well below thenational average. This data suggests that, inorder to maintain this level of spending, parentsmust be making considerable economies inother aspects of their budgets. As mentionedabove, discussions with parents indicated thatthey often went without and/or accrued debtsso as to afford essential items.

Figure 6 shows that parents of disabledchildren spent considerably more on everydayitems, spending almost four times as much onthe category ‘other regular spending’ whichincludes children’s possessions, medical itemsand toiletries. Parents in the group discussionsdescribed needing more items to amuse, occupyand stimulate their children, and many of theseitems were more expensive than those used bychildren without a disability. Also, manydisabled children needed more toiletries andnon-prescription medicines which were used fora longer period.

On average, parents of disabled childrenspent almost two-and-a half times as much onnon-school items and activities as parents ofnon-disabled-children (£12.37 and £5.22respectively). Activities for disabled childrenoften cost more as they are specialised or need

16


to be on a one-to-one basis. Parents of disabledchildren spent twice as much on clothes to allowfor the additional wear and tear, and toaccommodate the extra changes their childrenrequired. Finally, parents of disabled childrenspent more on school activities to compensatefor the lack of specialised equipment, especiallyin mainstream schools. Parents of disabledchildren insisted that the extra expenditure wasrelated directly to the needs of their child.

There were only two areas of spending onwhich parents of non-disabled children spentslightly more: Christmas presents and holidays.It may be that, because these parents spent lesson the essential everyday items, they had moremoney available to spend on ‘treats’. It shouldbe noted that the majority of parents of disabledchildren who participated in this researchreceived help from the FFT and most obtained aholiday grant of up to £300, thus restricting their

spending on this budget area. The data revealsthat the same pattern of spending more oneveryday items and less on Christmas andholidays for disabled children holds trueirrespective of the age of the child.

New or second-hand

The data from the inventories shows that themajority of items bought by parents were new.There were two main reasons that parents gavefor not using second-hand goods. First, mostparents were unable to invest in the timeneeded to look for suitable items since many ofthe children required very specific items, suchas clothes with Velcro rather than buttons, orequipment that was safe to use with a child witha severe impairment. Second, some parentsregarded second-hand goods as a false economysince they did not last as long as those boughtnew.

Figure 6 Comparison of parental spending

£s p

er w

eek

25

20

15

10

5

0

Cloth

es

Nappies

Other

regular

spen

ding

Non-school

activ

ities

School a

ctivit

ies

Christm

as

Birthday

s

Holiday

s, tri

ps,

outings

Small FortunesCCDCCD – disabled childrenSmall Fortunes – non-disabled children

17

Spending by parents

Borrowing items from friends ororganisations was also not an option for manyparents. This was because either the items wereunsuitable or parents were concerned theywould be damaged by the extra wear and tear.

Support from family, friends and

organisations

Examination of the data contained in theinventories highlighted that parents providedthe majority of items for their child (Table 1).The main exception to this was the provision ofmedical equipment, most of which wasprovided by statutory organisations. Medicalequipment included items such as wheelchairsand lifting equipment. Organisations alsosupplied 15 per cent of the computingequipment for educational use to whichchildren had access, and provided specialisedfootwear to 16 per cent of children in this study.

Parents were grateful for the help providedby grandparents, other relatives and friends,although it was limited. Relatives and friendsbought or handed on clothes, videos, toys andtravel items such as car seats and pushchairs.These gifts were important to parents andchildren because they meant not only thatparents did not have to meet the cost but alsothat, perhaps more importantly, other peopletreated their child as they did any other.

Summary

Excluding food, the spending data showed thatparents of disabled children spent on average£65.51 per week. This was almost twice as muchas parents of non-disabled children. The higherlevel of spending was on day-to-day itemsrather than on holidays, and on birthday andChristmas presents. All the parents in this studyspoke of the financial difficulties they had

Table 1 Who provided the majority of items (row percentages)

Absent Grand- Other Organ-Item Parent parent parent relative Friend isation

Travel equipment 82 – 2.6 5.1 2.6 7.7Computer and accessories 79.4 – – – 5.9 14.7Bed equipment 95.5 1.5 – 1.5 – 1.5Audio/visual 88 1.5 3 3 1.5 3Baby clothes 96.3 – – 1.9 1.9 –School clothes 94.4 2.8 – – – 2.8Home clothes 92.6 – 1.9 1.9 3.7 –Outdoor wear 94 – 4.1 2 – –Underwear 98 – 2 – – –Nightwear 90.5 2.4 2.4 2.4 – 2.4Footwear 81.4 – 2.3 – – 16.3Toys and games 98.5 – 1.5 – – –Medical equipment 4.5 – – – – 95.5

18


experienced in trying to provide their child withthe things they needed. The following chapterexamines the data on parental spendingalongside the budget standards, so as to explore

the extent to which parents were able to providetheir child with the items they regarded asessential.

19

3 Spending and the budget standards

The budget standards represented what parentsagreed was the minimum essential amount achild with severe disabilities should have toobtain a reasonable quality of living. In thischapter, the budget standards are comparedwith what parents actually spent on theirchildren. To enable direct comparisons to bemade, the budget standards have been adjustedso that they include only items of spendingcovered by the diaries. Food has been droppedcompletely as the data collected in the diariesproved impossible to cost reliably. Also thebudget standards allowed an amount of moneyto cover the costs of school and non-schoolactivities, transport, birthdays, Christmas andholidays. Therefore, in the discussion thatfollows, these items are presented as onecategory: activities, transport and occasions.

Spending deficit

Examining the budget standards alongsideactual spending data revealed the shortfallbetween minimum essential needs and actualspending.

Parents spent less on their children onaverage than the budget standards. The budgetstandard for the six items – clothes; laundry;toiletries; medical items; children’s possessions;and activities, transport and occasions – was£120.67 per week. Parental spending for thesesame items was £65.51 per week. This meansthat there was a spending deficit of 46 per cent.According to this data, parents were only able toprovide children with just over half the itemsthat they regarded as essential. Parents wereonly too aware that they could not afford to

meet the level of spending implied by thebudget standards as demonstrated by thisparent:

I’d love to be able to spend that much everyweek but no way can I afford it. If I spent that onher there would be nothing left for the rest of us.There would be no money for food or bills, fornothing. I’d like to but no way.(Check Back Groups, Mobility Disability, birth to 5years)

Figure 7 shows that, for five of the sixcomparable items, parents spent considerablyless than the budget standard.

Parents came closest to meeting the budgetstandard on medical items; the budget standardallowed for an average of £3.30 and parentsspent £3.21 per week. However, for clothes;laundry; toiletries; children’s possessions;activities; transport and occasions, parents’spending was approximately half of the budgetstandard. This means that parents spent onlyhalf as much as they had agreed was necessaryto provide a disabled child with the minimumessential to achieve a reasonable quality of life:

It’s hard because you want to do more … I spendwhat I have, sometimes I spend more than that.Me and her dad do without and we manage, butit’s not easy for me or her. She knows we worryall the time about money and bills, so she doesn’task for things. What a way to live! She has to putup with all that’s wrong with her and then to haveus worrying about whether we can pay theelectric bill because she has had to have theheater on.(Task Groups, Traumatic/Intermittent Conditions,6–11 years)

20


Average spending and the budget

standards by age

Figure 8 shows that the greatest shortfallbetween average spending and the budgetstandards was for the youngest children, that is,those aged less than 5 years. Average spendingfor this age group was £60.18 per week and thebudget standard was £137.57: a spending deficitof 56 per cent. This deficit was reduced to 36and 42 per cent for children aged 6 to 10 and 11to 16 years respectively. If this shortfall betweenspending and the budget standard is taken as anindicator of unmet needs, then this is greatestfor children less than 5 years of age.

Parents of the youngest children also hadslightly lower incomes and received fewerbenefits than those of older children, whichmeant that they had less money to meet the

Figure 7 Parental spending and budget standard

£s p

er w

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60

50

40

30

20

10

0

Cloth

es

Laundry

Toile

tries

Med

ical it

ems

Childre

n’s poss

essio

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Activit

ies, t

ransp

ort

and o

ccas

ions

Budget standardSpending

Figure 8 Parental spending and budget standards by

age groups

Birth to

5 ye

ars

£s p

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140

120

100

80

60

40

20

0

6–10

year

s

11–1

6 yea

rs

Budget standardSpending

budget standard. Approximately 53 per cent ofparents of the youngest children had incomes ofless than £200 per week and the sameproportion received a maximum of threebenefits. This was compared with 37 per cent of6 to 10 year olds and 48 per cent of 11 to 16 yearolds whose parents had incomes of less than£200 per week. These parents also received morebenefits; 66 per cent of parents of 6 to 10 yearolds and 54 per cent of 11 to 16 year oldsreceived four or more benefits.

Spending priorities

Despite the differences between the budgetstandard and actual spending levels, thepriorities of parents were similar, regardless ofthe age of the child. Figure 9 shows that, while

21

Spending and the budget standards

there were small variations between thepercentage of parental spending allocated toeach area and the budget standard, in generalspending priorities were the same. Thisconfirms that the budget standards reflectparents’ actual spending priorities. The highestpercentage of both actual spending and thebudget standards was allocated to activities,transport and occasions (43 per cent and 45 percent respectively).

For the youngest children, the biggestdifferences between the percentage spent oneach item and that allocated to the budgetstandard were for medical items, children’spossessions and activities, transport andoccasions. Parents of these youngest childrenspent 18 per cent less than the budget standardon activities, transport and occasions. Thispattern changed slightly for 6 to 10 year olds.Parents of these children spent less on laundryand toiletries but more on possessions, and on

Figure 9 Comparison of spending and budget standard priorities

Per

cen

t

100

90

80

70

60

50

40

30

20

10

0Spending

dataBudget

standard

Birth to 5 years

Spendingdata

Budgetstandard

6–10 years

Spendingdata

Budgetstandard

11–16 years

PossessionsActivities, transport, etc.

MedicalToiletriesLaundryClothes

activities, transport and occasions. For parentsof the oldest children, the biggest differencebetween the percentage spent and the budgetstandard was for clothes. Parents spent 19 percent on clothes whereas, in the budget standard,clothes accounted for 28 per cent of the costs.

Benefits for children with disabilities

The fact that children with disabilities cost morethan other children is recognised by the benefitssystem. Parents of children with disabilities canapply for a confusing array of benefits. Some areadditional sums within existing benefits(Disabled Child Premium in Income Support);others are benefits specifically for people withdisabilities (such as Disability LivingAllowance). Some benefits may be available tothose whose income falls below a certain level(Disabled Child Premium in Income Support).The sums allowed can be flat rate (Disabled

transport and occasions

22


Child Premium) or can vary according to theage of the child (Disability Living Allowancehas different rates for the care and mobilitycomponents depending on severity). Eligibilityfor some benefits is dependent on the claimantmeeting certain criteria or already being inreceipt of other benefits. The problem for someparents is that they were not aware of their ownand, indeed, their child’s entitlement to benefitand found the system bewildering:

I’m sitting here listening and I never knew youcould get these benefits, nobody told me. I justthought they knew Mark was disabled and wedon’t work so we got what we got.

Well I used to work for the Employment Service,so I know about benefits but I still ended up intears on the phone trying to persuade someonethat I was entitled to the higher rates. So knowingdoesn’t always help.

(Task Group, Mobility Disability, 6–10 years)

Table 2 shows the range and rates of benefitsto which a severely disabled child might beentitled in 2000/01.

Parents might also be entitled to InvalidCare Allowance in recognition that many carersare prevented from entering the labour market.Since Invalid Care Allowance is paid to thecarer, or in this case to the parent, rather than tothe child, its value has not been included in thecalculations below. Also, as Child Benefit isclaimed back pound for pound for those inreceipt of Income Support, it has not beenincluded as part of benefit income.

Since the original study was completed in1997/98, the benefit rates for children haveincreased and the age relativities have altered sothat, in 2000/01, the levels of benefit are thesame for children aged up to 16 years, In 1997/98, the maximum benefit income for a childwith a severe disability was on average £113.03.1

This assumes that the child was entitled to alladditional premiums available.

In 2000/01, this situation has improved andTable 2 shows the maximum benefit income fora child with a severe disability was £124.80 perweek. This represents a significant improvementin that, during this period, benefits for childrenwith severe disabilities increased by almost 10

Table 2 Maximum benefits for children with disabilities, 2000/01

Benefit Amount (£s)

Child disability paymentsDisability Living Allowance higher rate – care component 53.55Disability Living Allowance higher rate – mobility component 37.40Income Support, disabled child premium 22.25Total 113.20

General children paymentsIncome Support 26.60Minus Child Benefit 15.50Total 11.60

Total child disability payments + general children payments 124.80

23

Spending and the budget standards

per cent. However, £124.80 assumes that thechild is receiving their full entitlement at thehighest rate. If children receive the middle rateof Disability Living Allowance (DLA) carecomponent and the lower rate of DLA mobilitycomponent, their maximum benefit incomewould drop to £83.85 per week.

Benefit adequacy

This section compares the minimum budgetstandards with the maximum benefits to whichchildren might be entitled to in 2000/01. Thebudget standards referred to below include all

items identified by parents as essential. Theitems included are: clothes; bedding; laundry;toiletries; food; furniture; equipment; transport;children’s possessions; trips, activities andoccasions; and adaptations. The amountnecessary to meet their children’s needs was£152.77 per week.

The difference between the maximumbenefit income and the budget standard is£27.97 per week, which means that there is ashortfall of 22 per cent. While this is significantfor parents, the situation has improved since1997/98 because of the increases in benefits forchildren and the premiums available to childrenwith severe disabilities, and these have helpedto reduce the deficit between the budgetstandard and benefit income.

However, very large assumptions weremade in calculating the maximum benefitincome. First, it was assumed that children withdisabilities receive their maximum benefitentitlement. While nine out of ten childrenreceived Disability Living Allowance, this wasnot always at the maximum rate. Parents werekeen to stress the difficulty they experienced in:

• Finding out which benefits they wereentitled to:

There is a definite lack of communicationconcerning what you are entitled to.

And unless you read about it or someone elsetells.

Unless somebody tells you because I didn’t knowhow old they had to be for Motability.

I didn’t know about Attendance Allowance,Disability Living Allowance.

(Task Group, Traumatic/Intermittent Conditions, 6–10 years)

• Filling in the forms:

They are extremely long-winded.

You’re filling out the same questions over andover again.

When you’re trying to get into the system first ofall, you fill out a form for disability, fill out a formfor other benefits that you can get as well, thenyou’re filling out forms for your statementing andthe statementing process is horrific, you have towrite reports.

(Check Back Group, Mobility Disability birth to 5years)

• Being assessed:

Everybody you see has to do an assessment, it’sall in the files, can’t any of them read?(Orientation Group, Sensory Impairment, 6–10years)

• Appealing when they were either notawarded the benefit at all or given theincorrect rate:

24


Just claiming for the benefits that you’re entitledto, you have to appeal, the things they send you,they’re enough to put anyone off … it takes you aweek to fill it in and it’s madness.

Further on they’ll ask you the same questions in adifferent way, and I reckon it’s to try and catchyou out. So I always keep a copy of everything.When I first applied for disability money, it tookme nearly two years to get it. I had to constantlyfight, appeal it.

(Check Back Group, Traumatic/IntermittentConditions, birth to 5 years)

Summary

When the data on parental spending isexamined alongside the budget standards, thepicture that emerges is one of parents who,whilst struggling to do their best, are unable toprovide their children with the goods andservices they believed to be essential for areasonable quality of life. On average, parentswould require £152.77 per week to enable themto meet the budget standard.

This chapter suggests that, while thefinancial situation has improved, in that benefitsfor disabled children have increased, there isstill a shortfall between benefits and the budgetstandards. The difficulty for parents of disabledchildren is that, as well as worrying about thelack of money, they have other things to ‘worry’about. The following chapter considers some ofthese concerns.

25

Previous chapters of this report have exploredthe additional financial costs of bringing up achild with a severe disability and described howspending on essential items accounted for thebulk of parental spending. However, there wasa deficit between what parents spent and thethings they believed their children needed, eventhough they spent ‘as much as they could’. Thefocus groups revealed that this deficit was notrestricted to spending. Rather, parents reportedsimilar shortfalls between needs and resourcesin other areas of their lives. For example, manyparents felt they needed help and support fromprofessionals and their own families, especiallyon learning that their child had a particularimpairment or condition. In reality, such helpand support was not always forthcoming and,when it was available, was often not tailored totheir particular needs.

The lack of practical and emotional supportproduced particular tensions and difficulties forall involved. This chapter describes how, whilestruggling to reconcile the additional financialcosts with the needs of their child, parents alsohad to confront new and unexpectedexperiences. In essence, they had to construct anew paradigm of family life so as toaccommodate and include all aspects of their‘new’ lives. Within this new paradigm,relationships, obligations, aspirations,responsibilities, as well as one’s sense of self,had to be redefined and renegotiated.

Reconstructing family life

Parents acknowledged that the process oftransition and adjustment for all new parentswas difficult but suggested that for them it was

especially overwhelming and described it asfollows:

You never expect this and you’re never prepared.

For a brief moment your hopes vanish and you’releft holding your fears literally.

But, then, all you feel is love; the worry, the guiltcomes later but so does the joy and the pride – allyou really have is a child, not a child who is this orthat but a child.

(Orientation Group, Mobility Disability, 11–16years)

All the parents who participated in thisstudy reacted and responded to the news thattheir child had a serious medical condition indifferent ways. Some parents had suspected that‘there was something wrong’ and confirmationwas in some senses, a relief:

I knew there was something wrong. She was soquiet, she didn’t cry, but she didn’t really respondto other things either. When I said anything to myhealth visitor or anyone else, they just said Ishould be grateful she didn’t cry all the time. But Iknew she wasn’t right but nobody would believeme. When they told me I was shocked and angry,they should have listened to me before. This wasone time when I wanted to be proved wrong but… now I know, I’m finding out what helps and I’mdoing things. I don’t just worry and I’m notfrightened.(Check Back Group, Sensory Impairment, 6–10years)

For other parents, it was evident either at thebirth or shortly afterwards that their childrenhad a serious condition, although further tests

4 A new paradigm of family life

26


were often required which delayed diagnosisand prognosis. Parents in this situation wereequally devastated that their baby was seriouslyill but they spoke about the excellent care theyreceived from the specialist baby units. This didnot lessen their shock, but it reassured parentsthat everything possible had been done andreduced feelings of anger:

The pregnancy had been great. All the tests wereOK. There was no hint that anything was wrong.The doctors said it was just one of those things.No explanation, so we were shocked. We cried.Seeing something that small fighting with its tinybody to breathe. You don’t think beyond themoment. The doctors did everything they could.You can’t describe the feelings, of worry, ofwanting them to be OK. This little baby that youlove more than anything or anyone and all themachines.(Task Group, Mobility Disability, 6–10 years)

Receiving a diagnosis or confirmation thatthere was something ‘wrong’ with their child,was very important to parents as it oftensignified the point at which they were able tobegin to contemplate their future and to ‘thinkbeyond the moment’. The evidence from thisstudy is that parents need this information toenable them to begin to reconstruct family lifeand to address fears, worries and feelings thatpreviously had been hidden away. Thisrebuilding process did not happen instantly;often there was some considerable time betweenhearing the news, understanding and acceptingit. But, on reflection, parents reported that‘being told’ represented a turning point in theirlives. For many, it was only from this time thatthey started to regain some control over theirown, as well as their child’s, lives. This was

particularly so for parents who had suspectedtheir child suffered from a particular conditionbut who experienced a long delay in getting adiagnosis.

All parents emphasised that the process ofrebuilding family life was slow and difficult.They had anticipated and hoped to be a typicalfamily: mum, dad and baby. Their reality wassomewhat different. By having a child with asevere impairment they were atypical: theywere not a ‘normal family’ and felt excluded:

When you have a child like ours, everyone sittingat this table will tell you, you are treateddifferently. I thought it was me and I imagined itbut listening to everyone else, I know it wasn’t.(Check Back Group, Traumatic/IntermittentConditions, 6–10 years)

Parents were suddenly exposed to theattitudes that many disabled people andterminally ill patients encounter everyday: theywere marginalised and ignored. The discussionswith parents suggested that ‘other people’ didnot want to associate with anyone who was ‘lessthan perfect’ or different from everyone else. Bydeviating from the ‘norm’ parents and childrenappeared to threaten the illusion of normalfamily life:

When I went into a room people would stoptalking. No one asked about Tom. It was as if hedidn’t exist. When I mentioned him they alllooked uncomfortable. Nobody knew what to say.None of them ever asked to hold him, theywouldn’t go near him. Were they frightenedthey’d catch something?(Task Group, Mobility Disability, birth to 5 years)

Many parents said that it took time for themto adjust to their child’s condition. During the

27

A new paradigm of family life

initial period, the practicalities of looking aftertheir child and establishing workable routinesmeant that there was little time for them toconfront their own feelings. One parentdescribed this activity as a cocoon in which shewrapped herself so tightly that little if anythingcould get beyond her hard work or exhaustion.This cocoon enabled her to keep the world at adistance so that she did not have to dealimmediately with its harsh stares andunthinking questions and reactions. Even thoseparents who struggled to obtain a diagnosis hadsimilar experiences in that the ‘battle’ withprofessionals, combined with the practicalitiesof their child’s condition, left little time foranything else. With the benefit of hindsight,some parents said that life at this time was ‘likeliving in a blur’.

During this initial period parents said that,whilst some of their families and friends werequite supportive, others were not. Some parentswere disowned and others blamed. Parentsdescribed how the birth of a child, which shouldbe a happy family occasion, was sometimestransformed into a hostile and loveless event:

I come from a big family and I got two cards fromthem saying congratulations. Most of themwouldn’t have anything to do with us. I couldn’tbelieve it. I was heartbroken.(Task Group, Sensory Impairment, birth to 5years)

Frequently, normal social relationships withfamily and friends were strained. Parentsaccepted that the social rules that ordinarilyinfluence our attitudes and suggest patterns ofbehaviour were inadequate. They were awarethat many people simply did not know what tosay or do, but many parents stressed that they

felt the same. Receiving a diagnosis somehowchanged this situation in that it eventually gaveparents the confidence to challenge others’behaviour:

I doubted everything. The way we were treated, Ithought they must be right. It’s my fault. I’m abad mother. When I found out what it was, Ithought they’re wrong. It’s not me. No one’s toblame and they have to get used to it.(Check Back Group, Traumatic/IntermittentConditions, 6–10 years)

This is part of the explanation why getting adiagnosis or formal acknowledgement thatsomething was ‘wrong’ was so important toparents. While parents were not seeking to havetheir child labelled, they spoke of the emotionalrelief on knowing exactly what the child’ssituation was and of what to expect. It alsoreassured parents that they were not to blameand that they were good parents.

As parents grew in confidence, they wereable to establish new social rules. For example,they challenged behaviour that excluded themand their child; they demanded that their childwas treated fairly and had the same rights asother children; and they refused to be pitied andthen dismissed from social gatherings. Oneparent was particularly infuriated andfrustrated by how people responded to herautistic son. When he had a temper tantrum andpeople stopped to look and comment on how heonly ‘needed a good smack’, she would handout cards suggesting they contact the autisticsociety for more information. This direct actionwas at some personal cost and came about aftermany years of being exposed to such ridicule.Setting the rules for what was acceptable meantshe was no longer made to feel inadequate or

28


apologetic. It was neither she nor her son’sbehaviour that needed to change; rather it wasother people who were in the wrong. This actionwas unusual, but other parents who listened tothis story were impressed by it, and said thatthey wished they had thought of it and had thecourage to do the same.

Public entity and invisible family

The descriptions above of parents’ experiencesof family life highlight certain contradictionsand paradoxes. The parents regardedthemselves as a family with a child andexpected to be treated accordingly; yetexperience taught them that they were treateddifferently. It appears that the effect of the newsthat their child had a serious condition,regardless of when it came to light, was totransform them into a family apart. They wereno longer ‘ordinary’. Few people saw beyondtheir child’s condition, and recognised andaccepted them as a family with similar hopes,fears and ambitions as any other.

Parents reported that they stopped beingtreated as a family and, whereas other ‘normal’families participated in everyday events, theywere excluded. However, it was not the physicalexclusion that parents found most difficult todeal with, rather it was the change in attitudesthat devastated them. Their experience was thatas a family they no longer evoked positivefeelings from people but instead were pitied. Bybeing treated as a matter of regret they werestripped of their family status and denied thesame emotional and social worth as ‘normal’families. The discussions with parentssuggested that, because they did not function as

a ‘typical’ family, they ceased to be one andbecame invisible:

It was like we didn’t exist. Nobody wanted toknow us.(Orientation Group, Traumatic/IntermittentConditions, 11–16 years)

However, the contradiction was that despitetheir invisibility they were a public entity. Themajority of parents in this study reported thatwhen they went out with their child everybodystared at them, but they added that few peoplelooked directly at them and even fewer saw amum and a child. Parents were also aware thatthey and their child were often the topic ofconversations with friends, neighbours andpassers-by. Yet, despite this, parents said fewpeople would talk to them and many had theexperience similar to the mother quoted above,of conversations stopping when they entered aroom.

Parents reported a similar duality in the wayin which health and social professionals treatedthem. In their experience, they as families weresubsumed by their child’s condition and werefor example, the ‘dyspraxia family’. By equatingthe family with the child’s condition, they weredisassociated from most of the attributes offamily life, leaving the condition as the onlything to treat or assess. Their needs as a familyoften were not addressed or acknowledged.

Parents in this study were acutely aware oftheir loss of privacy. In many instances, theyand their child were often the topic underdiscussion:

They hold case conferences and have meetingsto talk about us or rather what state his lungs arein now.(Task Group, Mobility Disability, 6–10 years)

29


They reported that they were always beingassessed:

… everyone who comes through my door doestheir own assessment. Some prod and poke anddon’t talk to us, some ask the same questions buthardly anyone will talk to Emily.(Orientation Group, Mobility Disability, birth to 5years)

They also reported that professionals oftenasked the same sensitive questions in what wassometimes an insensitive manner:

They ask me in front of Jonathan whether he stillwets himself, is he dry at night? This is a youngman who has nothing wrong with his brain andeven the social worker doesn’t talk to him.(Task Group, Mobility Disability, 11–16 years)

The majority of parents argued that theintimate details of ‘normal’ families were notdiscussed in a similar manner and they failed tosee why they should be treated differently. Allthey wanted was the same respect afforded toother families.

A few parents were aware that they posed aparticular dilemma to some health and socialprofessionals in that the condition of their childcould not be cured. Doctors and otherprofessionals could only treat the symptomsand so in this way their children represented a‘failure’. One parent spoke about how her sonwas described as a ‘an especially challengingcase’ and another as ‘a very difficult and sadcase’. These conversations took place in front ofparents and children although they were notpart of them. Parents did not want professionalsto become emotionally involved with them andall agreed that they needed ‘professionaldetachment’. However, parents were adamant

that they deserved and were entitled to respect.They also insisted that their public profilewithin the world of professionals should notmake them invisible as a family.

Parent or carer?

I’m not a saint. I’m a mum who has a beautifullittle daughter. That’s all. I love her and look afterher. I do my best for her. She brings us love; shemakes us happy. Some things are harder thanothers, but I’m her mum.(Task Group, Traumatic/Intermittent Conditions, 6–10 years)

The above quote demonstrates that parents didnot differentiate between their role as parentand the tasks they performed to care for theirchild. In their experience, parents did whateverwas necessary to look after their child and inthis sense they were no different to any otherparents. The only difference was that many ofthe children in this study had specific andspecialised needs. In order to meet these needs,parents often performed tasks ordinarilyundertaken by professional or formal carers,that is, by individuals specially trained and paidto care for the sick or disabled.

However, to the outside world, there wassome ambiguity; were they parents or carers? Alarge proportion of non-professionals viewedmany of the parents in this study as carers firstand parents second. By giving primacy to theircaring role, it enabled them to focus on thephysical and practical tasks performed. Thus, itbecame possible to ignore the lovingrelationship between parent and child, and theeffect of this division of roles between parentand carer was to depersonalise the relationship.

30


In this way, it was legitimate to dispense withnormal conventions when relating to parentsand to justify treating them differently to others.

In contrast, many professionals did notacknowledge the expertise that parents hadacquired in looking after their child and thecarer element of their role was ignored. Often,the opinions of parents were not sought and,when offered, were dismissed. For example,parents reported that, when changes tomedication, treatment or service delivery werediscussed, they were not consulted until afterthe decision had been made. There werenumerous examples of how changes to servicesresulted in chaos or added expense for parents.Changing the type of free nappies provided leftsome parents with nappies they could not usebecause they did not fit or were simplyinadequate and leaked. Parents resented thiscavalier attitude and were angry and frustratedat how professionals ignored their knowledgeand the fact that they provided the bulk of theday-to-day care for their child. It seemed toparents that professionals were happy to letthem care for their child when it suited them,but would not afford them the same rights as acarer. By being excluded in this way, parentswere made passive recipients of services,despite the evidence to the contrary that theyalso were active providers of care.

To add to the frustrations and difficulties ofparents, there were a few instances whenprofessionals even denied them their parentingrole. That is, they would fail to realise that theywere not talking about a disease or conditionbut a child and the person to whom they weretalking was a parent. Parents accused someprofessionals of lacking tact and understandingboth at the point of diagnosis and in subsequent

episodes of treatment, and this is demonstratedby this parent’s experience:

… you sit around and you’re sort of slumping inyour chair, and he doesn’t do this, and you think,oh, I think I’ll just slit my throat now and havedone with it and they just don’t seem to realisethat this is your child that they are talking about,that this child to you is just as important as theirchildren are to them and they wouldn’t talk abouttheir children in those terms.(Check Back Group, Traumatic/IntermittentConditions, 6–10 years)

In the private worlds of the families thattook part in this study, there was no divisionbetween parent and carer. However, in thepublic world of the professionals as well asthose outside their immediate family, they wereoften allocated only one role, either parent orcarer. A few parents were denied any role. Theissue for parents was how to integrate theirprivate reality with public perceptions in such away as to afford them the same status as anyother family. Many parents developed strategiesto help them achieve this integration, whichinvolved renegotiating and reconstructingrelationships with all involved, including theirsense of self. This is explored in the followingsection.

Reconstructing relationships

Reconstructing the self

The majority of parents had expected thathaving a child would bring about veryfundamental and far-reaching changes in termsboth of their lifestyle and for them asindividuals. Over half of the parents in thisstudy already had a child and were aware of the

31


ramifications of having children. Yet, despitetheir previous experience and knowledge, allparents were equally shocked and upset atfinding out that their child had a seriousmedical condition. Already having a child didnot in any way dissipate these emotions.

Resolving the emotional issues andaddressing the practical concerns was difficultfor parents and changed them as individuals.All parents (both mothers and fathers) spokeabout how they had changed as people. Thestatement that echoed through all 36 of thegroup discussions was: ‘I’m not the same personany more’. Many explained that before theirchild was born they had been relatively quietand reserved; they did not challenge authorityand accepted what they were told; they wererelaxed, had lots of friends and had ‘a sense offun’. Since finding out that their child wasseverely disabled, their personalities hadchanged. Some parents described themselves asaggressive, pushy, stressed and obsessive. Thesechanges did not happen instantly and mostparents did not welcome them, with somestating they did not like who they had become.But experience had shown parents that thesechanges were necessary if they were going to dotheir best for their child.

Parents explained why they had to becomesomeone else:

I would say I am much more aggressive now. Idon’t take no for an answer. I know that if I don’tpush for something then my daughter won’t getwhat she needs. I don’t like doing it and it makesme angry.(Check Back Group, Traumatic/IntermittentCondition, 11–16 years)

One mother explained that she used to be‘well liked’ and never made a fuss but now:

I can see how people look when they see mecoming. I know they’re thinking ‘not her again,what does she want this time?’ I can honestly saythat, before Emily, I never made a scene, I neverdreamed of shouting at anyone but I’ve done it.But what else am I to do? I’ve tried everythingelse but they won’t listen.(Orientation Group, Mobility Disability, birth to 5years)

Parents said repeatedly that it was thosewho shouted loudest who got the help theyneeded and were entitled to. Some of those whohad previously lacked confidence becameassertive. They acquired new skills and learntsubstantial amounts about their child’scondition. Some parents became ‘experts’; theyset up or joined self-help groups and for the firsttime in their lives were an active part of anorganisation. It was not ‘all bad’; some parentshad benefited from the changes.

However, parents resented their lack ofcontrol and argued they had no choice but tochange in order to obtain the help their childrequired. While many were now very drivenand determined individuals, all said they weretired and exhausted. Although all the parentsloved their children, some were overwhelmedby the responsibility. In their experience, it wasup to them, and them alone, to ensureeverything possible was done to help. This leftsome feeling so daunted that as one mum said:

I worry all the time. Should I be doing somethingelse? I’m scared all the time. I can’t relax.(Task Group, Traumatic/Intermittent Conditions, 6–10 years)

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There were other changes that affectedparents’ sense of identity. Many mothers wereunable to return to work. Some were unable tofind suitable and/or affordable childcare, somechildren required 24-hour care but, for most, thepractical implications of attendingappointments, combined with the unpredictablenature of their child’s conditions, made it verydifficult to find a job with enough flexibility. Forsome, this was the first time in their lives thatthey had not worked or had not intended toreturn to work. Suddenly and unexpectedly,their social world became the hospital, thewaiting room and the home. Their sense ofisolation was intense.

Although few fathers gave up jobs to lookafter their child, most changed their workingpatterns if not their jobs. Some foundemployment that offered greater flexibility orthat required them to work fewer hours, so as toenable them to help with day-to-day tasks.However, the implication of this was that theymissed out on promotions:

I know because I can’t work the overtime, I’venot been promoted. They actually said it to me.They’re very good but because I can’t be aroundall the time when they want me to be, that was it.I see their point.(Check Back Group, Mobility Disability, 11–16years)

The corollary of a world without paid workor with reduced career prospects was altered lifeplans and aspirations. Parents spoke about howdifferent their futures looked now as opposed tobefore the news of their child’s condition. Forexample, some parents had planned to movehouse, go on holidays, retire early or changecareer. These things were no longer a possibility,

given their reduced financial circumstancescombined with the additional financial costsdescribed earlier. Most parents were veryfatalistic about their changed aspirations, it was‘just the way it was’. A few parents were angrybecause it was not their child’s condition per se

that brought about these changes but rather thelack of appropriate practical help.

Parent 1: It’s the way it is and we get on with it,there is no point doing anything else.

Parent 2: Well it makes me mad. They have allthese services and things to help but we can getnone of them. If you could just rely on them[services] then you’d know you’d be able to work,but at the minute it’s a miracle if they come ontime to take him to school. How could I get towork if I don’t know when I’ve to take him the 12miles to school? Tell me that.

(Task Group, Sensory Impairment, 11–16 years)

Parents of older children were worried aboutwhat would happen when they retired. Manyhad given up work to look after their child andhad no pension other than that provided by thestate. A few parents were especially anxiousbecause their children were soon to move intosupported accommodation, that is, leave home.This would mean that they as parents would nolonger be entitled to claim benefits in their ownright such as Attendance Allowance. The onlybenefits they would be entitled to claim werestate pension and Income Support. Someparents were very concerned how they wouldmanage to live on this reduced amount as noneof them had any savings. These fears producedtensions within the family. While parents werepleased that their child was taking a steptowards independent living, their pleasure was

33


tainted by fears for their own financial securityand future.

Finally, parents who had been independent,and who had taken pride in managing on theirown and not asking for help, talked about howthis situation changed when the severity of theirchildren’s conditions became apparent. In orderto obtain the help their children needed theyhad to ask for help. Some parents turned tofamily and friends, and others to formalagencies such as statutory organisations andcharities. The majority of parents did not likehaving to ask for help, as they did not want tofeel obligated. Also, in asking for help, they feltas if they had to justify and explain why theyneeded a particular item. Often they had toprovide charities and other agencies withinformation about their financial and livingarrangements in order to qualify. They also hadto complete application forms, which took timeand effort. These forms usually requireddetailed information about their child’scondition and concentrated on the things theirchildren could not do. For these reasons,applying for help was emotionally draining:

I’m always writing ‘Ben can’t’ in forms. He can dosuch a lot but people only see what he can’t do,that’s how they think of him.(Orientation Group, Traumatic/IntermittentConditions, 6–11 years)

Relationships with families and friends

Relationships with family and friends alsochanged. As mentioned above, some weresupportive and helpful while others wereunable to accept the emotional and practicalimplications of the children’s conditions. As a

result, they had very little contact with eitherthe parents or the child. Some partners andgrandparents blamed one parent and therelationship was sullied by recriminations:

They [parents-in-law] blamed me. They kepttelling me how nothing like this had everhappened in their family so it must be my family.(Task Group, Sensory Impairment, birth to 5years)

This particular parent explained that theirchild’s condition was caused by a lack ofoxygen at birth and was not a genetic disease.The rational explanation did not overcome theemotional and reactive responses because forsome families a disabled child was a symbol ofshame and/or imperfection. The followingextract from one of the group discussionsillustrates this point:

Diane: Well I don’t have parental influence thankgoodness, because they couldn’t cope with it …My mum found it hard to cope ... and it was like aghastly secret, couldn’t tell anyone who this childwas or anything, couldn’t say it was hergranddaughter, and in the end we walked awayfrom it because the staff had been so supportive,they were like my parents. If I was having a badday I could go to the hospital, and I did, I livedthere, but I never stayed overnight, never, butthat’s another thing, parents having to cope withit and having to cope with your parents copingwith it as well.

Linda: No my in-laws didn’t accept it … it wasn’tmentioned to people particularly, I mean the next-door neighbour knew about it, we still see thenext-door neighbour, but a lot of the relatives hadnot got a clue.

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Wendy: My mother-in-law just couldn’t cope withit. They just couldn’t have this associated withthem.

(Orientation Group, Mobility Disability, birth to 5years)

Parents found these reactions impossible todeal with and, in some families, relationshipswith grandparents, and even some partners,ended. Parents concluded that there was norelationship to reconstruct because there was noshared understanding. They believed that thisaction was necessary so as to prevent theirfamily being undermined by people who wereashamed of their child and, by association, ofthem. The particular relationships disintegratedbecause they lacked reciprocity and respect.

Yet parents knew that it did not have to belike this. There were many examples of howfamilies and friends responded well:

My parents have been great, they treat Rose thesame as all the others. She goes and stays withthem and next year they’re taking her on holiday.

Mine moved to be closer so that they could help.

(Check Back Group, Traumatic/IntermittentConditions, 6–10 years)

Parents were aware that families and friends,like themselves, needed time to adjust to thechildren’s conditions. They also recognised thatthe nature of these relationships changed andsome concluded that it was a ‘completelydifferent way of life’. For some parents, therenegotiating of relationships and roles withpartners, families and friends encompassed onlypractical tasks; the emotional aspects were leftunmentioned. Other families successfullyaddressed both aspects and their relationships

developed and continued to be rewarding.Never having time together put added strain

on relationships, as did the day-to-daypracticalities of providing intensive, round-the-clock care. Many parents had not been out withtheir partners for years as they were unable toget anyone to baby-sit and/or they could notafford to go out. As a mechanism for copingwith the demands of life, some became twoseparate families with mothers providing mostof the care for the disabled child and fatherslooking after the other children. Parents wereunhappy at this division but were unable to doanything to resolve the situation as they hadneither the time nor the energy.

In reconstructing their family life, parentswere aware of the needs of all their children.They did their best to address these and oftenfound themselves trying to compensate for thedifficulties that all encountered. Thiscompensation operated on two levels. First,parents tried to limit the impact of thedisabilities on the child so that he or sheachieved a reasonable quality of life and, at thesame time, they attempted to compensate forthe way society treated them. For example, inorder to try and prevent people from staringmore and reacting badly, parents paid moreattention to, and money for, clothes for childrenwith severe disabilities than for other children.

Francis: Well I think if you don’t dress them well,if they don’t look really nice, then people aregoing to stare aren’t they, if their clothes lookshabby or anything. I mean they stare anywaywhen they see a child in a wheelchair, or a childwith some form of disability. I mean they dostare, but if they look untidy they will stare evenmore, so I think it’s very important that they lookreally nice all the time.

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Interviewer: Is it essential?

Francis: I would say so.

Heather: For their self-esteem and for yours, yes.

Diane: Yes, I think it is essential.

(Check Back Group, Mobility Disability, 6–10years)

There were other examples of how parentstried to limit the impact of the disability on theirchild. For example, as disabled children wereoften unable to go out and play with friends,parents took them out more often and boughtthem items to entertain and amuse them. Asdiscussed in Chapter 3, this increased thefinancial costs to parents. Not surprisingly, themajority of parents in this study were worriedabout not having enough money and how theywould manage financially. Most parents tried toprotect their children from these concerns anddata from the 42 questionnaires administered tochildren suggest that parents were relativelysuccessful in this. Most children thought thattheir families had enough money to live on andthat they were no worse or better off than otherfamilies. This is despite the fact that the majorityof the families had incomes below the nationalaverage as all but a few qualified for help fromthe Family Fund Trust.

Almost half of the children (20) said theirparents never, or rarely, discussed money withthem and one-third received the items theyasked for. However, parents were sure that

older children knew about their financialdifficulties and limited their requests as a result.While there is insufficient data to confirm orrefute this belief, the indications are thatchildren did limit their requests to things thatthey thought parents could afford. Added tothis, nearly all children said they believed theirparents when they said they could not have anitem because their parents could not afford it.

Second, parents tried to compensate theirother children for the lack of time they had tospend with them and for the alterations andlimitations to their lifestyles, which resultedfrom having a sibling with a severe impairment:

Sam: Well, you do [compensate], but I think aboutyou saying you compensate the child who has thedisability because they can’t do things, we, Ithink, compensate to the one who is not disabledbecause there is a lot of things we can’t do as afamily.(Task Group, Mobility Disability, 6–10 years)

In compensating for their children’sconditions, parents were doing their utmost toreconstruct a normal family life. Life had shownparents that there was considerablediscrimination, as well as numerous physicalbarriers, which prevented their children fromachieving their potential. They simply wantedtheir children, disabled and non-disabled, tohave the same opportunities and experiences asothers and they were prepared to do whateverwas required to achieve this.

36

This report has demonstrated that the financialcosts to parents of bringing up a disabled childare significant. Excluding food, parents spent onaverage £65.51 per week, which is almost twiceas much as parents spent on non-disabledchildren. An examination of parents’ spendingpatterns show that the increased costs were forday-to-day items rather than ‘luxuries’ such asholidays, and birthday and Christmas presents.

Comparing parents’ actual spending withthe budget standards revealed a shortfallbetween what parents spent and the amountthey agreed was necessary to meet the needs oftheir children. While parents did their best,spending an average of £65.51 per weekprovided disabled children with less than halfthe goods and services that parents had agreedwere essential to achieve a reasonable quality oflife. The budget standards suggested thatparents actually needed to spend £152.77 perweek.

While the financial situation has improved,in that benefits for disabled children haveincreased, there remains a shortfall betweenmaximum benefit entitlements and the budgetstandards. Benefits would need to be increasedby £27.97 per week so as to meet the budgetstandards.

The difficulty for parents of disabledchildren is that, as well as worrying aboutmoney, they have other things to ‘worry’ aboutas well. The lack of practical and emotionalsupport was compounded by a lack of money,and produced particular tensions anddifficulties for all involved. The reality forparents was that, while struggling to reconcilethe additional financial costs with the needs oftheir child, they also had to confront new and

unexpected experiences. The data from thegroup discussions suggests that it was only byconstructing a new paradigm of family life thatparents could respond positively to these newexperiences, and redefine and renegotiaterelationships, obligations, aspirations,responsibilities as well as one’s sense of self.

The conclusion of this report remains thesame as in Paying to Care (Dobson andMiddleton, 1998). Bringing up a disabled childcosts more money and takes more time.Therefore, parents want and need services thatare responsive, sensitive and reliable, and thatreflect both their needs and those of their child(Baldwin and Carlisle, 1994). To achieve this,services will have to change. Some of thesechanges will require more money but they alsonecessitate a more fundamental overhaul so asto ensure that disabled children and theirparents are accorded the same rights andrespect as those who are not disabled.

The parents of a severely disabled child arealso carers. They have expertise and experienceand, therefore, must be involved in planning thecare of their child. Harnessing parents’knowledge and working with them can onlyenhance the effective use of resources that willbenefit both parents and professionals; to dootherwise would be to neglect the rights ofparents and their children. As one mother said:

I don’t want any other mother to have to gothrough what I did. To sit in office after office andlisten to doctors, social workers, all of them, talkabout me and my child as if we weren’t real. Wehave feelings. They should remember that we aremums, that’s all they have to do.(Orientation Group, Mobility disability, 6–10 years)

5 Conclusions

37

Chapter 1

1 The definition used by parents was derivedfrom the United Nations Convention on theRights of a Child. Article 27 states that partiesrecognise the rights of every person to astandard of living adequate for their physical,mental, spiritual, moral and social well-being.

2 For a detailed discussion of the sample seePaying to Care (Dobson and Middleton, 1998,pp. 50–7).

3 The reference after the quotation refers to thestage of the research at which the quotationswere collected. The age and disability grouprefer to the case study used by that group.

Notes

Chapter 2

1 The diaries recorded regular spending and, inorder to produce a more complete estimate,this data was supplemented by informationfrom the self-completion questionnaires onless regular spending such as Christmas,birthdays, holidays, etc.

Chapter 3

1 This is taken from the earlier report, Paying to

Care (Dobson and Middleton, 1998), andrefers to the maximum benefit income thatchildren with the severest disabilities wereentitled to.

38

Baldwin, S. and Carlisle, J. (1994) Social Support

for Disabled Children and their Families: A Review

of the Literature. Edinburgh: HMSO

Dobson, B. and Middleton, S. (1998) Paying to

Care: the Cost of Childhood Disability. York: YPSfor the Joseph Rowntree Foundation

Dowler, E.A. and Dobson, B. (1997) ‘Nutritionand poverty in Europe: an overview’,Proceedings of the Nutrition Society (1997), No. 56,pp. 51–62

Kagan, C., Lewis, S. and Heaton, P. (1998) Caring

to Work: Accounts of Working Parents of Disabled

Children. York: Family Policy Studies Centre inassociation with the Joseph RowntreeFoundation

Bibliography

Living in Britain: Results from the General

Household Survey (1994) London: HMSO

Middleton, S., Ashworth, K. and Braithwaite, I.(1997) Small Fortunes. Spending on Children,

Childhood Poverty and Parental Sacrifice. York: YPSfor the Joseph Rowntree Foundation

Middleton, S., Ashworth, K. and Walker, R.(1994) Family Fortunes. London: CPAG Ltd

Smyth, M. and Robus, N. (1989) The Financial

Circumstances of Families with Disabled Children

Living in Private Households. OPCS Surveys ofDisability in Great Britain. Report 5. London:HMSO

39

The research design was modified from, a study which drew up budget standards forchildren without a severe disability (Middleton et

al., 1994). There were three main stages to thisstudy, which are summarised in Figure A1.1.These were the orientation groups, task groupsand check back groups.

The first task for those participating in thisstudy was to agree a definition of essentialminimum. The definition which groups weregiven as a starting point was from the UnitedNations Convention on the Rights of a Child (towhich the United Kingdom is a signatory).Article 27 of the Convention states that ‘parties

Appendix 1: The research design

Figure A1.1 The research process

ORIENTATION GROUPSLanguage, concepts, priorities

Lists

Design draft diariesand inventories

TASK GROUPSNegotiate lists of

minimum requirements

Cost listsIdentify outstanding issues

Amend instrumentation

CHECK BACK GROUPSConsider lists

Negotiate outstanding issuesStrength of consensus?

Finalise listsRe-cost

Draw up budget standards

PARTICIPANTSComplete diariesand inventories

PARTICIPANTSComplete diariesand inventories

40


recognise the right of every child to a standardof living adequate for the child’s physical,mental, spiritual, moral and social well-being’.This definition was discussed by parents andwas accepted as the basis for drawing up thebudget lists. Parents voiced their support forthis definition as it recognised that the conceptof essential, especially for a child with a severedisability, must go beyond mere subsistence.

Costs were deliberately omitted from thediscussions until the final stages, the check backgroups, so as to avoid needs being defined byavailable income. In costing the budget lists, theresearchers incorporated criteria specified byparents. For example, parents decided on whichretail outlets should be used to price items; theyestimated how often to replace items andwhether or not they had to be new or second-hand. In general, parents opted for ‘middle ofthe range’ outlets which represented acompromise between quality and price.

The budget standard groups

The group discussions took place in threephases between January and October 1997. Thefirst phase, or orientation stage, consisted of ninefocus groups and aimed to ensure that the ideasand concepts employed in later stages of theresearch were informed and understood byparticipants. Participants in these groups alsodeveloped pen pictures of three case studychildren for whom the budget standards werederived (see Appendix 2). The parents in thesegroups also discussed the instrumentation to beused in the task and check back groups.

During the task groups (18 groups), each areaof the budget was considered in turn and

parents were asked to negotiate and agree listsof minimum essential items. The groups werepresented with lists of items and activities foreach budget component taken from the earlierbudget standard for non-disabled childrendeveloped by Middleton et al. (1994). Parentswere asked to consider whether the case studychild would need more, less, the same amountor completely different items and activities. Thefacilitator intervened in the discussions andnegotiations as little as possible: recordingdecisions reached on a flip chart; moving thenegotiations along; and reminding the groupwhen necessary of the definition of essentialminimum to which they were working. Onceeach list was complete, groups were asked toconsider whether it was too restrictive or over-generous. Issues such as the proportion of newto second-hand, durability and where itemsshould be costed were all discussed. After thisstage, the researchers costed the budget lists atoutlets agreed by the groups. Outstandingmatters that needed to be resolved in the finalphase of the groups were noted.

The final phase or check back (nine groups)was in some ways the most important since, aswell as resolving outstanding issues, thefinancial implications of the budgets wereconsidered and the strength of the consensustested. Parents were given uncosted lists ofitems compiled by the task groups and askedwhether they agreed with them (or not) and ifthey should be amended in any way. Oncechanges had been negotiated and agreed, theywere incorporated into the budgets by a secondresearcher present in the groups. Parents werethen told how much it would cost to provide theagreed list of items and asked if, in the light of

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Appendix 1: The research design

this, they would change the lists. Any changeswere noted and the budgets revised accordingly.Following the check back groups, the budgets

were re-costed and finalised, and the essentialminimum budget standards were drawn up.

42

Movement

0–5 years

Karen is 4 years old and has been diagnosedwith cerebral palsy. She cannot walk unaided.She has recently started wearing callipersalthough she still needs a buggy when goingoutside. Karen also has problems manipulatingthings with her hands and is particularly smallfor her age. She is incontinent and does notsleep through at night because of severe spasms.She also has to be turned on a regular basis.

Recently, Karen has started attending aspecialist day nursery and receivesphysiotherapy once a week at the hospital. Shealso attends the hospital on average about oncea month to see other specialists.

6–10 years

Karen is 9 years old and has cerebral palsy. Sheattends a special school. She uses a wheelchairand her legs are sometimes in callipers. AsKaren has problems manipulating things withher hands, she struggles to feed herself andusually needs help. She has access to acomputer at school to help with school-workbut needs one-to-one tuition.

Karen suffers severe spasms and has to beturned regularly at night. As she is getting older,this is becoming more of a problem as is gettingher in and out of the bath. Karen is alsoincontinent.

Physiotherapy treatment helps with hercondition. She attends the hospital regularly buthas also needed emergency treatment when herspasms have been severe. Karen has good andbad days. On good days she attends school buton bad days, especially during the cold winter,she is at home most of the time.

11–16 years

Karen has cerebral palsy and is 15 years old. Sheattends a specialist school. She uses awheelchair and her legs are sometimes incallipers. As Karen has problems manipulatingthings with her hands, she struggles to feedherself and usually needs help. She has access toa computer at school to help with school-workbut needs one-to-one tuition.

Karen has severe spasms; this has resulted ina number of emergency visits to the hospital.Physiotherapy helps with her condition. Herparents have recently heard about a newtreatment to help reduce and control the spasmsbut this is not available on the NHS.

Karen needs to be turned regularly duringthe night and has to be lifted in and out of thebath. She is incontinent.

As Karen gets older, she wants more andmore to be like the other children, to wearfashionable clothes, etc. However, as she is verysmall for her age, finding suitable clothes can beproblematic.

Sensory disablement

0–5 years

Ben is 2 years old and has been blind from birth.It is thought that he may have learningdifficulties caused by brain damage as he hasnot yet started to talk or crawl. Ben is ananxious child who wakes up several times anight and who needs constant supervision. Heis currently at home full time with his mother.Ben attends the hospital for regular assessments.

Appendix 2: Case studies

43

Appendix 2: Case studies

6–10 years

Ben is 8 years old and attends a special schoolfor children who are blind. He has also beendiagnosed as suffering brain damage and hisspeech has been slow to develop. He is able towalk unaided for short distances. Ben isincontinent and wakes several times during thenight. He is a very anxious child and needs helpwith most daily tasks. Ben is very prone to otherillness and is frequently not able to attendschool. He is often at home with his mother andneeds constant supervision.

11–16 years

Ben is 14 years old and is blind. He wasdiagnosed as suffering brain damage and hisspeech is also limited. Ben can walk for shortdistances unaided and does not need awheelchair. As he gets older, he gets veryfrustrated at not being able to do things forhimself and regularly has tantrums. He needsconstant supervision.

Ben is also very prone to other illnesses andoften has to spend time away from school and athome with his mother. The situation at home issometimes very stressful.

Traumatic and intermittent conditions

0–5 years

Patricia is 5 years old and has startedmainstream school. She has severe epilepsy andis diabetic. Her diabetes is controlled byinjection, which her mother gives. Patricia doesnot sleep through at night because of hercondition and is frequently off school as a result.She wets the bed at night but is otherwisecontinent.

6–10 years

Patricia is 11 years old and attends mainstreamschool. She has severe epilepsy and is diabetic.Her diabetes is controlled by injection, whichher mother gives her. Patricia does not sleepthrough because of her condition and isfrequently off school as a result. Sheoccasionally wets the bed.

11–16 years

Patricia is 16 years old and attends amainstream secondary school. She has severeepilepsy and is diabetic. Her diabetes iscontrolled by injection, which she administersherself. Patricia has never slept through at nightand has missed considerable time from school.She is often at home because of her illness.

the impact of childhood disability on family life · the impact of childhood disability on family...

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