housing matters: national evidence relating to disabled

i

PPP R E S S

POLICY

Housing mattersNational evidence relating to disabledchildren and their housing

Bryony Beresford and Christine Oldman

ii

Housing matters

First published in Great Britain in November 2002 by

The Policy Press

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© University of York 2002

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Bryony Beresford is a Research Fellow at the Social Policy Research Unit, University of York and Christine Oldman

is an independent researcher based in Leeds.

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iii

List of tables and figures vAcknowledgements vi

1 Background 1Introduction 1Other research 1The project 2Outline of the report 2

2 The families and their living circumstances 3The children 3Family size 4Family circumstances 4Summary 6

3 The problems with their homes 7Introduction 7Housing condition 7Difficulties with the local environment and community 8Housing unsuitability: extent and range 8Aspects of housing unsuitability: identifying problem areas 9Factors associated with the areas of housing unsuitability experienced 11Needs and priorities: an alternative data source 15Summary 16

4 Responding to unsuitable housing 17To move or adapt? 17Factors affecting preference for moving or adapting 17Assessment of housing need 18Moving home 19Changing and adapting the home 21Advice about changing or adapting outside the assessment process 23Summary 23

5 Current provision and funding practices 24Introduction 24Fragmented responsibilities 24Assessing aggregate housing need 25Recognising and acting on housing need in individual needs assessment 25Adaptations: funding practice and procedures 26Perceived extent of unmet need for adaptations 28The adaptations delivery process 28Providing an information and advice service 29Deployment of housing stock 29Summary 30

Contents

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Housing matters

6 The study’s policy implications 31Introduction 31An inadequate legislative framework 31Funding structures: complexity and iniquity 34Suitable housing: a search in vain? 35Summary 35

7 Conclusions 36Introduction 36Reconceptualising housing need 36An agenda for change 38

References 40Appendix A: The survey of parents 42Appendix B: The supply-side fieldwork 45

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v

List of tables and figuresTables

2.1 Type of impairment (%) 32.2 Family size (%) 42.3 Reported total weekly income (earnings and benefits) (%) 42.4 Distribution of sample by tenure (%) 52.5 The association between income and tenure: families with a disabled child and families with 5

a dependant child in the general population (%)3.1 Reported problems with the local environment (%) 83.2 Proportion of families reporting types of housing unsuitability (%) 103.3 Proportion of families reporting difficulties with each housing problem area (%) 103.4 Mean number of housing problem areas by weekly take-home income 113.5 Type of impairment by problem area (%) 133.6 Type of problem area by ethnicity: percentage of families reporting problems 143.7 First ‘change needed to the home’ reported by parents (%) 154.1 Type of problem area experienced by parents’ preferred solution 184.2 Outcome of housing need assessment 194.3 Barriers to moving and association with tenure (%) 204.4 Outcomes of completed applications for financial assistance from local authority 22

for housing adaptations: owner-occupiers and local authority renters5.1 Data obtained from the authorities on adaptations for children (%) 275.2 Adaptation data for previous financial year for area A (metropolitan authority: population ~250,000) 275.3 Adaptation data for previous financial year for area B (new, unitary authority: population ~100,000) 27A1 Marital status of respondents 43A2 Ethnicity of respondents 43A3 Ages of disabled children represented in the survey 44A4 Type of accommodation 44A5 Location 44B1 Professionals contacted in the course of fieldwork on supply issues 45

Figures

2.1 Association between income and tenure: families with a disabled child versus general 6population data

3.1 Prevalence of problems with housing conditions among families reporting poor housing condition 73.2 Number of problems with housing condition per family by tenure 83.3 Problems with the local environment by tenure 93.4 Number of housing problem areas per family 113.5 Factors associated with the number and/or types of problem areas experienced 113.6 Association between tenure and number of problem areas reported 123.7 Association between tenure and reported frequency of selected housing problem areas 124.1 Association between tenure and preferences to move or adapt 184.2 Feelings about changing tenure: owner-occupier to renting local authority/housing authority 21

property

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Housing matters

This project was funded by the Joseph RowntreeFoundation. A number of people providedinvaluable support and assistance to the project.We particularly wish to acknowledge thecontributions of Roger Burrows, Teresa Frank,Dot Lawton, Julie Williams and members of theproject’s research advisory group. We would liketo thank our research manager at the JosephRowntree Foundation, Alison Jarvis, for hersupport, enthusiasm and sensitivity to theconflicting deadlines we, as researchers,sometimes face.

The report presents what parents andpractitioners have told us, in various ways, abouthousing and disabled children. We are aware thatmany of the people who took part in this projecthave pressured or difficult lives, yet they chose tobe involved. We are very grateful for their timeand contributions.

Acknowledgements

1

1Background

“Housing and education. Those are thethings we wanted to get sorted. If you’vegot your home right you can cope.... Within24 hours of being in this house it was likeWOW! She was a different child.” (motherof Debbie, a nine-year-old severely disabledchild)

Introduction

In 1995 the Joseph Rowntree Foundation fundedthe first UK-based piece of research on housing,disabled children and their families. Thisqualitative piece of work revealed the significantimpact that living in housing unsuitable for adisabled child’s needs can have on familymembers. The quote we used at the beginning ofthis chapter sums this up: our homes arefundamental to our well-being – they can make itbetter or make it worse. For disabled childrenand their families, living in an unsuitable homecan affect parents’ mental and physical health andtheir needs for specialist support services. Forthe children, the impact is widespread, with alack of spontaneity and variety in their homelives, and no, or limited opportunities, to developindependence and self-care skills. In addition,from the accounts of parents and professionalsinvolved in this project, it seemed that theresources and systems currently in place torespond to the housing needs of disabled childrenand their families were woefully inadequate. Areport of the project, entitled Homes unfit forchildren: Housing, disabled children and theirfamilies, was published in the late 1990s (Oldmanand Beresford, 1998).

The Foundation was so persuaded by the findingsof this project that it funded the researchers tocarry out a series of regional ‘road-shows’ for staff

working in housing, social services and healthauthority departments. It also formed a planninggroup (the Housing and Disabled ChildrenPromoting Positive Change Planning Group)whose remit was, in essence, to work towardsidentifying local and national solutions for theshort, medium and long term. One of the firstactivities of this group was to canvas the opinionsof key individuals through a 24-hour ‘nationalevent’. The messages from participants at theroadshows and the national event were similar.All acknowledged that the housing needs ofdisabled children and their families are not beingmet. They identified the main barriers to meetingthese needs to be: inadequate resources (bothfinancial and in terms of good quality housingstock), lack of awareness among professionals ofthe housing needs of this particular population,and service fragmentation. Delegates to theseevents from housing, social services and healthagencies worked together on these issues andidentified some solutions or ways forward. Thesewere brought together in the publication Makinghomes fit for children: Working together to promotechange in the lives of disabled children (Beresfordand Oldman, 2000).

Participants also thought that further research wasneeded in order to support and promote change.Specifically, quantitative, robust and nationallyrepresentative data was called for to complementthe earlier qualitative work. The Foundationresponded to this by commissioning such a pieceof work, the culmination of which is this report.

Other research

Since our first project in 1998, some new researchhas been published which has demonstrated theimportance of paying attention to, and resolving,

2

Housing matters

the housing needs of disabled and older people(Bamford, 2000; Heywood, 2000). Neither studyfocused on disabled children although Heywood’ssample did include some disabled children. Bothstudies found that housing adaptations can have asignificant positive impact on the lives of disabledand older people.

Before adaptations, people describedthemselves with terms such as ‘prisoner’,‘smelly’, ‘degraded’, ‘depressed’, ‘ostracised’,‘afraid’, ‘embarrassed’, ‘at screaming point’and ‘very, very angry’, to pick a few. Aftergood adaptations had been done the keywords were: ‘freedom’, ‘independence’,‘useful’, ‘confident’ and ‘proud. (Heywood,2000)

The effectiveness of an adaptation, as with allservices, is, however, dependent on the quality ofthe assessment process and service delivery.What both these pieces of research reiterate is theimportance of paying attention to housing need.However, within the context of disabled children,almost nothing is known about the types ofhousing need experienced, and the extent towhich these needs are met or unmet.

The project

The aims of this project were:

• to ascertain the extent and nature of housingneeds of disabled children and their families;

• to quantify current housing service deliverypatterns to this group.

These aims of the study were met by threeseparate but related exercises:

• national needs mapping, and responses tounmet housing need, by means of a nationallyrepresentative survey of parents of severelydisabled children (see Appendix A);

• a mapping of current funding and practice interms of addressing the housing needs ofdisabled children and their families throughtelephone interviews with managers andpractitioners working in housing and socialservices departments (see Appendix B).

Over 2,500 parents and over 100 practitioners in43 housing authorities took part in the project.The survey of parents took place in the summerof 2000 and the work with practitioners in 2000and 2001.

Outline of the report

The following three chapters focus on reportingthe findings from the national survey of parents.Chapter 2 presents background or contextual dataabout the families who took part in the survey,including the nature of the children’simpairments, family and living circumstances. InChapter 3 we present the findings about thenature and range of housing problems faced byfamilies with a disabled child. The impact of thechild’s age, type of impairment, andsocioeconomic factors on families’ reports of theirhousing difficulties are also explored. Chapter 4focuses on data concerning parents’ responses toliving in unsuitable housing. In Chapter 4 wereport on parents’ preferences for moving oradapting, and their experiences of theseprocesses.

Chapter 5 moves on to look at what we found outabout the supply issues: the second main aim ofthe project. We should note here, however, thatefforts to collect data on current funding andpractice were severely thwarted by a lack ofstrategic information management at a local leveland the fact that what information there is isspread across a number of professionals.Although an important finding in itself, this doesmake for an analysis which lacks the detail andcomprehensiveness originally hoped for.

In Chapter 6 we look at the research findingsfrom a policy perspective. As with all appliedresearch, the purpose of this project was tosupport and inform change. However, we knowfrom our earlier work that the complexity ofpolicy in this area is a key barrier to change. It istherefore important that any implications drawnfrom our findings are placed, or understoodwithin the context of current policy (and potentialfuture changes). Drawing on the evidencepresented in this report, the final chapter, Chapter7, proposes a framework around which toreconceptualise ‘housing need’, and suggests anagenda for change.

3

2The families and theirliving circumstances

It is common to find so-called backgroundinformation about the characteristics of surveyrespondents consigned to appendices at the backof a research report. This, in the main, we havedeliberately chosen not to do. We would arguethat factors such as the nature of a child’simpairment, family size, tenure and income areessential ‘contextual’ information which we needin order to fully understand the housing needs ofdisabled children and their families, and theimplications for policy and practice which arisefrom that understanding.

The children

Almost 3,000 disabled children and young people(up 18 years) were represented in the survey,with a relatively even spread across the agerange, as is found in the national population ofdisabled children (see Appendix A). Boys andgirls were equally represented. We asked parentsto tell us about the types of impairment(s) thattheir child had (see Table 2.1).

Table 2.1: Type of impairment (%)

Type of impairment

Learning 71Communication 59Behaviour 50Posture and balance 46Use of legs and feet 39Continence 38Serious long-term health problem 32Use of arms 28Sight 22Hearing 18n=2,896 (missing = 45)

Note: sums to >100% as multiple response.

Given that this survey was concerned withchildren defined as ‘severely disabled’, it was notsurprising to find that 9 out of 10 children hadmore than one impairment, and over half (56%)had four of more impairments. Children withonly one impairment were most likely to eitherhave a serious health condition or a hearingimpairment. The majority of the sample hadimpairments which affected a number of activitiesor abilities. Seven out of 10 children werereported by their parents to have difficulties withlearning. Over half of the children hadcommunication difficulties, and problems withbehaviour were reported for one in two children.Over a third of children had physicalimpairments, such as ability to use legs or feetand difficulties with posture and balance. Asimilar proportion had difficulties withcontinence. Around one in five children had sightand/or hearing impairments.

In addition, within the sample, just over 1 in 10children were using at least one piece of medicalequipment in order to maintain life or managetheir healthcare needs. Equipment for enteralfeeding, oxygen therapy and suction (of mucous)were the items most commonly being used.Whether or not medical equipment was beingused in the home was strongly related to thechild’s age. A quarter of the children agedbetween 0 and 4 years were using medicalequipment.

Recognising this multiplicity and range ofimpairment is key to fully understanding thescope and nature of housing difficulties whichcan be experienced by disabled children and theirfamilies. Later in the report we explore theassociation between type of impairment and areasof housing unsuitability.

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Housing matters

Family size

Family size is an important ‘background’ variable,as our earlier work showed the importance offamily space in determining the suitability orunsuitability of housing (Oldman and Beresford,1998). Four out of five families participating inthe survey included two or more children, with40% of families having three or more children.The average number of children living at homewas 2.43; this is higher than the national averageof 1.8 dependant children reported by the 1998General Household Survey (ONS, 2000). In termsof total family size, the majority of familiesconsisted of four or more members, with a thirdreporting five or more members (see Table 2.2).(It should be noted that any non-family membersand members of the extended family living in thehome are not included in this figure.)

Family circumstances

Income and tenure play a key role both in termsof the presence of housing difficulties and theways in which a family can respond to, or dealwith, housing unsuitability (Oldman andBeresford, 1998).

Income

We asked parents to tell us their weekly take-home income (including earnings and benefits).The reported total weekly incomes ofrespondents are shown in Table 2.3, alongsidenational population data on total weekly incomesof families with dependant child(ren) collected bythe 1998-99 Survey of English Housing.

Table 2.2: Family size (%)

Number of family membersliving at home

2 93 234 355 206 97 4

Fewer respondents in our survey reportedincomes of less than £100 compared to thegeneral population of families with a dependantchild (5% as opposed to 14%). Receipt ofbenefits such as Disability Living Allowance(DLA) is likely to be the key factor in increasingmany families’ incomes to over the £100/weekthreshold. However, the median weekly incomefor respondents in our survey was much lower(£151-£200) than for families in the generalpopulation (£251-£300). In addition, only 1 in 10families in our survey had a total weekly incomeof over £400 compared to almost a third offamilies in the general population.

Comparative analyses of the incomes of familieswith and without a disabled child held onnational datasets has shown that, in the 1990s, thehousehold incomes of families with disabledchildren were much lower than the householdincomes of equivalent families without disabledchildren (Gordon and Heslop, 1998).Furthermore, in summarising findings from the1985 OPCS disability surveys on poverty anddisability, Gordon and Heslop (1998) describedfamilies with a disabled child as “the poorest ofthe poor”. A number of factors are at play here.First, there is clear, and growing, researchevidence of the association between social classand disability. For example, Gordon et al’sresearch evidence (2000a), on the basis of theirre-analysis of the 1985 Office for PopulationCensues and Surveys survey of disabled children,concluded there is “little doubt that ‘working

Table 2.3: Reported total weekly income (earningsand benefits) (%)

Survey ofCurrent English Housingsurvey 1998/99a

Total weekly income<£100 5 14£101-£150 23 9£151-£200 19 11£201-£250 19 8£251-£300 12 11£301-£350 7 6£351-£400 5 9£401-£450 4 6£451-£500 3 5£500 and over 3 20

�=2,672 �=5,768

Note: a Analysis on families with dependant child(ren) only.

5

The families and their living circumstances

class’ children have a higher risk of suffering froma disability than children from ‘middle’ or ‘upperclasses” (p 71). Second is the fact that meeting adisabled child’s needs for care and support affectsparents’ capacities to earn (Beresford et al, 1996).Coupled with lower incomes, research hasconsistently shown that the ‘extra costs’associated with bringing up a disabled childcompared to a non-disabled child areconsiderable, with recent work suggesting athree-fold increase in costs (Dobson andMiddleton, 1998).

Thus, while an over-representation of lower-income families was expected in this survey,given the source from which the sample wasdrawn (see Appendix A), we would argue thatthis sample is more representative of the majority

Table 2.4: Distribution of sample by tenure (%)

Survey ofCurrent English Housing survey 1998/99

Homeowner: paying mortgage 39 62Homeowner: mortgage paid 4 6Rent from local authority 37 18Rent from housing authority 12 6Shared ownership 1 n/aRent from private landlord 5 8Other 2 n/aTotal �=2,919 �=5,768

Note: Analysis on families with dependant child(ren) only.

of families with a disabled child than might seeminitially.

Tenure

The distribution of the sample according to tenureis shown in Table 2.4. More families in thissurvey were renting their homes (54%) than werehomeowners (43%). The main source of socialhousing was from local authorities, as opposed tohousing associations. One in 20 families wererenting their homes from a private landlord.

Table 2.4 also provides data on the tenure offamilies with dependant children found by the1998/99 Survey of English Housing. This shows aconsiderable difference between patterns oftenure between families with a disabled child andthe general population of families with adependant child. The possible impact of differentincome profiles between families with a disabledchild and families with non-disabled children ontenure patterns was therefore explored (see Table2.5).

The data presented in Table 2.5 suggests that,even when possible differences in income aretaken into account, the tenure patterns of familieswith a disabled child differ from families withouta disabled child. In particular, except for familieswith total weekly incomes of over £450/week,home ownership is less likely among familieswith a disabled child compared to families with anon-disabled child(ren). Figure 2.1 shows the

Table 2.5: The association between income and tenure: families with a disabled child and families with adependant child in the general population (%)

Rent from Rent from Rent fromHomeowners council housing authority private landlord

Current survey SEH Current survey SEH Current survey SEH Current survey SEH

<£100 12 23 60 47 19 17 8 13£101-£150 17 33 56 40 18 17 9 10£151-£200 28 45 49 32 17 10 7 13£201-£250 45 63 39 20 11 7 5 10£251-£300 65 79 23 12 8 3 4 6£301-£350 70 83 19 10 7 1 4 6£351-£400 84 85 10 7 4 2 2 6£401-£450 80 90 9 5 6 1 5 4£451-£500 92 89 5 4 3 1 – 6£500 and over 95 95 2 1 – 0 3 4

Note: SEH = Survey of English Housing

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Housing matters

Figure 2.1: Association between income and tenure: families with a disabled child versus general populationdata

impact of that discrepancy in home ownership onrates of renting council/local authority housingacross income bands.

Summary

This chapter has reported findings about thefamilies who took part in the survey and theirliving circumstances.

• Most ‘severely disabled children’ have morethan one impairment. These impairmentsaffected different areas of the child’s life,including learning, communicating andphysical abilities.

• One in 10 children in the sample were alsousing medical equipment in the home whichwas required for maintaining health orsustaining life.

• Families partaking in the survey had, onaverage, more children than families in thegeneral population.

• In line with other research findings on income,the income levels of families with a disabledchild(ren) was lower than families with non-disabled child(ren).

• The data suggests that families with a disabledchild(ren) are more likely to be living in rentedaccommodation (particularly local authorityhousing) than families with a non-disabledchild(ren) with a similar level of income.

These findings confirm what is already reportedin the literature on the families with a disabledchild and their living circumstances, and theimpact of disability on tenure has been usefullyfurther explored using comparative data from theSurvey of English Housing. Overall these findingspaint a picture of increased risk for deprivation.It is within this context children and families arefacing and managing the extra difficulties anddemands associated with the, often multiple,impairments which the child has.

100

<100

101-150

151-200

201-250

251-300

301-350

351-400

401-450 501+

451-500

Owner-occupiers: Survey of English Housing Owner-occupiers: Current survey

Rent from council: Survey of English Housing Rent from council: Current survey

Total weekly income (£)

80

60

40

20

0

% in

ten

ure

type

7

3The problems with their homes

Introduction

This chapter reports on the housing needsreported by respondents. The findings aredivided into those which pertain to generichousing needs – housing condition and the localenvironment – and those which are generated bythe child’s impairment and care needs.

Housing condition

Previous work on housing and disabled children(Oldman and Beresford, 1998) has revealed theimpact not only of physical or structural factorswithin the home but has also highlighted theneed to consider the impact of housing conditionand the local environment in which families areliving.

Four out of 10 respondents reported problemswith cold, damp and/or poor repair. Of thesefamilies, one in two said that their home wascold, and just under half had problems with dampand/or poor repair (see Figure 3.1).

There is no available data on the generalpopulation against which we can make directcomparisons. However, we did compare our datawith that of the Poverty and Social ExclusionSurvey (Gordon et al, 2000b). Conducted in 1999,the Poverty and Social Exclusion Survey collecteddetailed data on various poverty indicators on asample weighted towards those with low incomes(hence similar to our sample). Within the Surveysample, we looked at the data on respondentswith dependant children (n=341). Rates ofreporting lack of adequate heating facilities weremuch lower than families in our survey. Eight per

Figure 3.1: Prevalence of problems with housingconditions among families reporting poor housingcondition

cent of Survey families said they did not haveadequate heating facilities, compared to 14% offamilies in our survey. Rates of reportedproblems with damp were more similar betweenthe Poverty and Social Exclusion Survey and oursample: 11% of Poverty and Social ExclusionSurvey families reported problems with damp,compared to 12% of families in our survey. Thesedata suggest that families with a disabled childare more likely to be living in poor housingconditions than families with a similar economicprofile but with non-disabled children. Given theknown association between poverty and poorhousing conditions, they confirm the notion that,overall, families with a disabled child are amongthe most disadvantaged groups. In addition, it islikely that the child’s impairment raises parents’sensitivities to the suitability of the condition oftheir home.

Cold Damp Poor repair

100

80

60

40

20

0

%

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Housing matters

The frequency at which problems with housingcondition was reported within the sample variedaccording to tenure (see Figure 3.2). Owner-occupier families and families renting fromhousing associations were more likely to reporthaving no problems with the condition of theirhome compared to those renting from theircouncil or from a private landlord. Similarly, agreater proportion of respondents in the lattertwo tenure groups reported problems with coldand damp and poor repair compared to owner-occupiers and those renting from housingassociations.

Difficulties with the local environmentand community

We used a classification of aspects of the localenvironment/community from the Survey ofEnglish Housing to look at difficulties with thelocation in which families were living. Two thirdsof families identified at least one problem withtheir local environment, with a third reportingthree or more difficulties. The different featuresof the environment covered are shown in Table3.1.

The most frequently reported problem was withcrime: 4 out of 10 respondents stated that thiswas a problem in their local area. Vandalism andlitter in the streets were reported as a localproblem by a third of the sample, and problemswith noise and dogs by a quarter of respondents.One in five families had problems with theirneighbours. Over one in 10 non-white familiesreported racial harassment as a problem in thearea in which they lived.

Figure 3.2: Number of problems with housingcondition per family by tenure

Whether or not families reported problems withtheir local area, and the number of problems theyexperienced, was associated with tenure (seeFigure 3.3). Once again, owner-occupier familiesreported fewest difficulties with their localenvironment and those renting their homes fromthe local council had the greatest number ofproblems. It is interesting to note here that, incontrast to many of the other findings describedin this report, this is one aspect of housing wherefamilies renting from a private landlord seem tofare better than those renting from the council ora housing association.

Housing unsuitability: extent andrange

In this section we turn to look at the extent andrange of problems with housing which renderedhomes unsuitable for disabled children and theirfamilies. Parents were asked to indicate the waysin which their homes were unsuitable for theirdisabled child and the rest of the family. Table3.2 shows the extent to which each particulardifficulty was experienced by the families takingpart in this research.

The most frequently reported problem was thelack of space to store the child’s equipment –almost 4 out of 10 parents stated this was adifficulty. Having only one toilet and/orbathroom was a problem for around a third offamilies. A quarter of families said that the lackof a downstairs toilet and/or bathroom made theirhome unsuitable. Issues of size and space alsofeatured among the most frequently reportedproblems. Three out of 10 families said that theirbathroom was too small. In addition, just under

Table 3.1: Reported problems with the localenvironment (%)

Crime 39Vandalism 32Litter/rubbish in streets 32Noise 27Dogs 26Problems with neighbours 20Graffiti 19Racial harassment– white families (n=2,545) 3– non-white families (n=364) 12

Number of reported housing problems

0

20

40

60

80

0 1 2 3

Home ownerRent from councilRent from housing associationRent from private landlord

9

Figure 3.3: Problems with the local environment by tenure

The problems with their homes

one in three families responded that they did nothave enough bedrooms, and the fact that theyonly had one living room was a problem for asimilar proportion of families.

The number of different problems reported byfamilies

Fourteen per cent of families reported that theydid not experience any of the problems listed inTable 3.2. The remainder of families were livingin homes that were, in at least one way,unsuitable for their child or them as carers of thatchild. Indeed, many families faced a number ofproblems: half of the families reported five ormore different problems with their home. Ofthese families, one in three reported nine or moreproblems.

Aspects of housing unsuitability:identifying problem areas

Following the preliminary analysis reportedabove, the various types of housing unsuitability

were then grouped into a series of housingproblem areas. This was based on the findingsfrom our earlier work on disabled children andhousing unsuitability (Oldman and Beresford,1998). Eleven problem areas emerged and aredetailed below (see Table 3.3); the figures showthe proportion of families reporting a difficulty ineach problem area. We would suggest that thesefigures provide a rough estimate of the proportionof families with a severely disabled childexperiencing difficulties with each of these areasof housing difficulty in England.

A lack of family space (that is, space to meet theneeds of different family members, such as play,privacy, ‘time out’ and sleep) was the mostfrequently reported problem area. Over half offamilies said this was a problem. Difficulties withtoileting and bathing due to small rooms or thelack of an additional bathroom/toilet ordownstairs facilities were another commonproblem. One in five parents had unmet needs interms of equipment to assist with lifting, toiletingand bathing.

A lack of space for storing equipment wasreported by just over a third of families and one

Owner-occupiers

0

Rent from housing association

Rent from council

Rent from private landlord

Type of problem with local area

Vandalism Graffiti Crime Dogs Litter Neighbours Noise

% re

port

ing

prob

lem

50

40

30

20

10

10

Housing matters

Table 3.2: Proportion of families reporting types ofhousing unsuitability (%)

Not enough space to store child’s equipment 38Only one toilet 34Only one bathroom 30Small bathroom 30Stairs (n=2,626 – families living in at least 30two-storey homes)

No downstairs toilet (n=2,523 – families living 28in at least two-storey homes)

Not enough bedrooms 27Only one living or family room 27No downstairs bathroom (n=2,523 – families 26living in at least two-storey homes)

Location of home is unsafe for child 25(eg busy roads)

Steps up to front/back door 24No safe or suitable garden 22Small kitchen 22Cold 19Small toilet 18Neighbours unpleasant to child/other family 16members

Not enough space for child to use 16therapeutic/daily living equipment

Small living room(s) 16Damp 15No equipment to assist with lifting 14No equipment to assist with bathing 14Narrow doorways make use of wheelchair/ 11walking frame impossible

Not enough space to carry out therapies 11No equipment to assist with using the toilet 10Narrow front/back doors 10No facilities nearby 8Steps between or into rooms 7Inside of home unsafe in some way 3Other 3(n=2,941 unless stated)

Table 3.3: Proportion of families reporting difficultieswith each housing problem area (%)

Family space (space to play, space apart from 55other family members)

‘Functional rooms’ (kitchen, toilet, bathroom) 42difficult to use due to size

Only one toilet and/or bathroom 41Lack of space for storage of equipment 38Location 38Access around, and in and out of, the home 33Lack of downstairs toilet and bathing facilities 33Housing condition 27Lack of space to use equipment and carry 21out therapies

Inadequate facilities to meet carer needs 21(re lifting, toileting and bathing)

Safety inside the home 3

in five families also said there was not enoughspace in their homes to carry out therapies and/orfor their child to use the specialist equipmentprovided for them.

Just under 4 out of 10 parents (38%) reported thatthe location of the home (which includes featuresnearby such as busy roads making safety an issue,unpleasant neighbours and no nearby facilities)was a problem.

The figure for the number of families indicatingsafety was an issue inside the home is surprising,

and may reflect an inadequacy of the surveyinstrument. An alternative explanation is thatdealing with some aspects of safety (such as doorand window locks) are relatively inexpensive andmay be something families had alreadyaddressed. (It is also important to remember thatone in five families said they had no safe orsuitable garden.)

Number of problem areas experienced byfamilies

Three quarters of the families reportedexperiencing at least two problem areas, with onein four stating that there were six or moreproblem areas in their homes (see Figure 3.4).

Comparing with general population data

While we are not able to make any directcomparisons in terms of reported problems withhousing between our sample and with familieswith a dependant child(ren) in the generalpopulation, the 1998/99 Survey of EnglishHousing collected data on respondents’satisfaction with a number of aspects of theiraccommodation including: overall satisfaction,layout of accommodation, number of rooms andsize of rooms. Our analysis of the Survey ofEnglish Housing dataset (families with adependant child[ren] only) found that almost 9 outof 10 respondents reported being either very orfairly satisfied with their accommodation. Morethan four out of five respondents were very or

11


Figure 3.4: Number of housing problem areas perfamily

fairly satisfied with the layout of their home andthe size of rooms; furthermore, over threequarters were very or fairly satisfied with thenumber of rooms in their home. These figures,when compared with the data reported on typesand number of problems with their homecollected by our survey, suggest that families witha severely disabled child are experiencing farmore difficulties with their housing than familieswith dependant children in general. Secondaryanalysis of the Poverty and Social ExclusionSurvey (Gordon et al, 2000b) has allowed us tocompare, at quite a crude level, our findings onreported lack of space against a population ofsimilarly low-income families with non-disabledchildren. A third of families (33%) in the Surveyreported shortage of space as a problem withtheir accommodation. This is further evidencethat, even when income levels are accounted for,families with a disabled child are more likely toreport difficulties with poor housing conditionsand housing suitability compared to families withnon-disabled dependant children.

Factors associated with the areas ofhousing unsuitability experienced

Bivariate statistical tests were used to explore theassociation between the number and types ofproblem areas families experienced anddemographic and impairment factors. A numberof factors were found to be associated with thenumber and/or types of housing problemsreported by families (see Figure 3.5).

Income

A statistically significant effect of income on thetotal number of problem areas reported byparents was found between families on thelowest incomes (less than £250/week) with thosein the highest income group (more than £350/week) (F(3,2668)=5.34 p<0.001). Table 3.4 showsthe mean number of problem areas reportedaccording to reported weekly take-home incomeand the maximum number of problem areasreported. Taken together, these findings make itclear that, while associated with income,difficulties with unsuitable housing are beingexperienced by families in the higher incomeranges.

Figure 3.5: Factors associated with the number and/ortypes of problem areas experienced

• income• tenure• age• type of impairment• ethnicity

Table 3.4: Mean number of housing problem areas byweekly take-home income

Mean numberof housing Maximum

Weekly income problem areas number

<£150 3.8 11£151-£250 3.8 11£251-£350 3.4 10£350+ 2.9 10

Number of reported problem areas/family

0

3-5

1-2

6 or more

25%

37%

14%

24%

12

Housing matters

Tenure

Analysis of the data using bivariate statistical testsshowed that a significantly greater proportion offamilies living in local authority housing orrenting their home from a private landlordreported experiencing a lot of problem areascompared to owner-occupier families and thoserenting from housing associations (chi-

Figure 3.6: Association between tenure and numberof problem areas reported

Figure 3.7: Association between tenure and reported frequency of selected housing problem areas

square=41.98 df=9 p<0.001)1. Similarly, as Figure3.6 shows, a greater proportion of the latter twotenure groups reported no problems with theirhousing.

The specific differences between tenure groupsunderlying this overall difference are displayed inFigure 3.7. There were differences in thefrequency at which 6 of the 11 problem areaswere reported by the different tenure groups.

Owner-occupiers were least likely to reportlocation and family space as a problem, whilethose renting from private landlords were mostlikely to experience this difficulty. It was amongfamilies renting from housing associations wherea lack of downstairs, and/or a second, toilet/bathroom facilities was least frequentlymentioned, with, again, those renting from privatelandlords most likely to report these sorts ofproblems. However, inadequate size offunctional rooms (kitchen, bathroom, toilet) wasmost likely to be reported by families living inlocal authority housing, while owner-occupierswere least likely to experience this difficulty.Finally, housing condition was a far morecommon problem among those renting localcouncil accommodation or from private landlordscompared to the rest of the sample.

70

Family space Location Functional rooms

No downstairs facilities

Housing condition

One toilet/ bathroom

60

50

40

30

20

10

0

%

Problem area

Owner-occupier

Rent from local authority



Number of problem areas reported0

Owner-occupier

1-2 3-5 6 or more

30

40

50

20

10

0

%


Rent from councilRent from housing association

1 The chi-square test is a test of association. Here we used chi-square to see of there was an association between tenure andthe number of housing problem areas experienced. The ‘p’ value tells you the probability that an observed difference (in thiscase the number of housing problem areas experienced by families living in different tenures) has occurred ‘by chance’ or is asignificant, ‘real’ association. Typically, to be viewed as a statistically significant effect, the ‘p’ value has to be at least 0.01.The ‘p’ value here suggests a strong association between the number of housing problem areas experienced and tenure.

13


Age

The child’s age was also significantly associatedwith the number of problem areas reported byparents (chi-square=64.70 df=12 p<0.001).Overall this appears to be a linear associationwith a decrease in the number of problem areasreported with an increase in the child’s age. Wetested to see whether this association was beingaffected by the over-representation of use ofmedical equipment in the youngest age group.However, this did not affect the overall pattern.

Differences were found in the associationbetween age and specific problem areas.Difficulties with space for equipment storage,carrying out therapies, family space, safety andcarers’ needs in terms of lifting/handling werereported to a greater extent by parents of youngerchildren. However, there were no clear patternsof association between age and difficulties withlocation, access around the home, size offunctional rooms and lack of downstairs facilities.In addition, the likelihood that families wouldexperience problems with housing condition anda lack of a second toilet/bathroom were notassociated with the child’s age.

Reasons for the observed decrease in the numberof housing problems being reported as the age of

the child increases will include less reliance onparents for help with self-care activities, the factthat adaptations may have taken place, andequipment provided, and that, unlike under four-year-olds, the child is spending a proportion ofthe day in school. It is also important to note thatthe findings reported here are about relativechanges. The issue of housing unsuitability is stillvery real for parents of older disabled childrenand young people. One in five parents of 16- to18-year-old disabled young people in this surveywere experiencing six or more problem areaswith their housing. In addition, all we have beenable to explore is the number of problem areas asopposed to their various impacts on the quality oflife and well-being of family members.

Type of impairment

As reported earlier, the majority of childrenrepresented in this study had multipleimpairments. This made it impossible to look atthe impact of a single impairment on eachspecific problem area of housing unsuitability.However, we have been able to look for patternsin the data in terms of the level of reporting of aparticular problem area with the presence (buttypically not exclusive presence) of a specificimpairment. This is summarised in Table 3.5.

Table 3.5: Type of impairment by problem area (%)

Type of impairmentSerious

Conti- Communi- healthProblem area Physical nence Visual Hearing Behaviour Learning cation problem

Space of equipment 48 48 51 36 36 38 41 50storage

Safety inside 3 3 3 2 5 4 4 3Space to use equipment 31 29 26 20 15 20 22 29and do therapies

Family space 58 58 58 55 59 56 58 59Carer needs (lifting 34 30 32 19 17 21 23 29and handling)

Location 36 43 39 40 48 42 41 40Access within and in 47 42 48 30 27 33 35 42and out of home

Size of functional rooms 45 48 44 43 43 43 45 48Lack of downstairstoilet/ bathroom 38 38 36 28 33 33 35 37

House condition 25 26 27 30 30 27 27 31Lack of second toilet/ 43 44 42 39 44 42 42 42bathroom

14

Housing matters

Each row of the table displays the proportion ofchildren with each type of impairment whoseparent reports a difficulty with that housingproblem area. For example the top left-hand cellshows that 48% of children with a physicalimpairment reported a lack of space for storingequipment.

The key points to draw from the data displayed inTable 3.5 are as follows.

• Overall, these data suggest that some aspects/areas of housing unsuitability are associatedwith particular types of impairment.

• The two different sensory impairments(hearing and sight) do not appear to generatesimilar difficulties in terms of housingunsuitability. One reason for this may bebecause, unlike hearing, sight impairmentsalmost invariably co-occurred with physicaland/or learning impairments.

• The nature of the child’s impairments did notappear to affect families’ reports of a lack offamily space. This was a commonly reportedissue for all types of family. Similarly, the sizeof functional rooms (kitchen, bathroom, toilet)did not appear to be linked to a particularimpairment(s). Again it was frequentlyreported. Housing condition was anotherproblem area that did not appear to be stronglyassociated with particular impairments.

• The presence of physical impairments andcontinence, learning and behavioural problemsresulted in higher levels of reported need fordownstairs toilet and/or bathroom facilities oradditional facilities when compared to levels

of reported need where hearing impairmentswere present.

• Reports of a lack of space for storing equipmentwas found most frequently in families wherethe child’s condition included a physicalimpairment, visual impairment, incontinenceand/or the child had a serious health problem.These same impairments were also implicatedin terms of insufficient space to use specialistequipment or to carry out therapies. We wouldsuggest that the figures for children with visualimpairments need to be treated with caution asthis impairment typically co-occurred with atleast one other impairment.

• Concerns about safety inside the home weremost common where the child’s conditionincluded behaviour, learning and/orcommunication difficulties.

• Problems with a lack of equipment to managelifting and handling were, predictably,reported where there were physicalimpairments, continence problems, and serioushealth problems.

• The location of the family home was morefrequently reported to be a problem when thechild had certain impairments, particularlybehavioural problems.

• Reports of difficulties with access within, andin and out of, the home were most commonwhere one or more of the followingimpairments were present: physicalimpairment, visual impairment, continenceproblem and/or serious health problem. Tosome extent the finding for sight may be aresult of the fact that, in this sample, sightimpairments tended to co-occur with at leastone other impairment.

Table 3.6: Type of problem area by ethnicity: percentage of families reporting problems

Ethnic group

White Black/African Pakistani andProblem area Caribbean Indian Bangladeshi

Space of equipment storage 19 27 31 31Safety inside 3 6 3 3Space to use equipment and do therapies 37 40 38 48Family space 53 64 57 77Carer needs (lifting and handling) 20 26 26 31Location 38 39 28 38Access within and in and out of home 32 21 38 36Size of functional rooms 41 41 57 56Lack of downstairs toilet/bathroom 32 24 32 40House condition 24 31 37 45Lack of second toilet/bathroom 40 41 50 58

15


Ethnicity

Parents who described their origin as other than‘white’ reported a greater number of problemareas compared to white families (chi-square=27.31 df=3 p<0.001). A third of non-whitefamilies experienced three or more problem areaswith their home compared to one in five whitefamilies.

The association between housing unsuitabilityand ethnicity is not just a question of white versusnon-white. There were differences betweenethnic groups in terms of the types of problemarea they were likely to report (see Table 3.6).

Pakistani and Bangladeshi families were mostlikely to report needs in terms of family space(77% compared to 64% of Black/AfricanCaribbean families and 57% of Indian families and53% of white families); a lack of a second toilet orbathroom (58% compared to 50% of Indianfamilies and 41% of Black/African Caribbean and40% of white families); poor housing conditions(45% compared to 37% of Indian families, 31% ofBlack/African Caribbean families, and 24% ofwhite families). Finally, concerns about locationwere least common among Indian families (28%,compared to 39% for other ethnic groups).

Table 3.7: First ‘change needed to the home’ reported by parents (%)

Additional bedroom (14% of whom stipulated ground floor) 14Additional toilet (81% of whom stipulated ground floor) 12Increased living/communal space 9Garden – improve safety (fences and gates) 8Improve general condition of house (eg heating, double glazing/new windows, damp, roof repairs, 8external doors replaced)

‘Child’ space (play, equipment, therapy) 8Improved bathroom/toilet facilities (eg level access shower, electric toilet, hoists not minor equipment 6such as grab rails, bath instead of shower)

Internal access between rooms (door frames, internal steps, position of doors, change of flooring) 5Additional bath/shower (62% of whom stipulated ground floor) 5Ramps to external doors 5Improve access to/use of garden 4Access between floors (lift, stair lifts) 4Increased size of toilet and/or bathroom 3Small bathroom/toilet adaptations (rails and taps mainly; might be funded within an adaptation 2grant or within community equipment budget)

Rails to assist moving about 1Safety (includes door and window locks, and safety glass) 1Parking improvements (eg off-road, tarmac drive) 1Changes to kitchen – improve safety or access/use by child 1Other 3(n=1,532) 100

Needs and priorities: an alternativedata source

In the questionnaire we asked parents to tell usabout the sorts of changes that were needed tomake their homes more suitable for their childand themselves as carers of that child. An open-ended response format was used for this questionand here we present our analysis of the firstdescribed change (although many parents listednumerous changes). This provides some idea ofparents’ priorities in terms of addressing theunsuitable aspects of their housing and offers analternative approach to looking at theirperceptions of their housing needs. Table 3.7shows the types of desired changes parents toldus about; they are listed in order of the frequencyin which the changes were mentioned.

Issues of space featured strongly in the sorts ofchanges to their homes that parents wanted tocarry out: an additional bedroom, increasedliving/communal space, a safe garden and spacefor the child to play, to use their specialistequipment and to have therapies. Theserepresent the needs for space for the wholefamily: the child’s needs for space for play andtherapies; all family members’ needs for

16

Housing matters

psychological space from each other; the need forprivacy; and the need for uninterrupted sleep.Four out of 10 responses were concerned withimproving or addressing these sorts of spaceneeds.

Increasing or improving toilet and bathingfacilities were other common areas of desiredchange. Just over one in four parents listed achange of this sort, and the need for downstairsfacilities was stressed. Changes which assistedwith the child being able to move about the home(changing internal features, installing lifts, railsand ramps) also featured. Fifteen per cent ofresponses concerned this issue. A further 4%listed improving access to, or the child’s ability touse, the garden as a priority. Finally, improvinggeneral housing conditions was a priority for 1 in12 families.

Summary

In this chapter we have explored findings fromthe survey concerning the type and extent of thehousing needs of families with a disabled child.First, data on housing quality or housingcondition were reported. Second, findings abouthousing unsuitability were reported – here welooked at the features of the home environmentwhich present difficulties to families in terms ofeither caring activities, promoting the disabledchild’s well-being and independence, and limitingthe impact of the impairment(s) on other familymembers, such as siblings. Key findings arisingfrom our analyses of the data are as follows:

• Families with a disabled child are almost twiceas likely to report problems with inadequateheating in their homes compared to a similarpopulation of families with non-disabledchildren.

• Comparisons with other data sets suggest thateven when income levels are accounted for,families with a disabled child are more likelyto report difficulties with poor housingconditions and housing suitability compared tofamilies with non-disabled dependant children.

• Nine out of 10 respondents reported at leastone difficulty with their housing which made itunsuitable for them as a family with a disabledchild, and many families reported multipleproblems.

• There were numerous ways in which homeenvironments were unsuitable: lack of space,small size of rooms, difficult location,inadequate toileting/bathing facilities, poorhousing, unsafe internal environment, accessdifficulties within and in and out of the home,and lack of equipment to assist with lifting andhandling.

• Inside the home the most frequently reportedarea of difficulty was the lack of space. Thisincluded space for play, privacy or ‘time out’,equipment use and storage, and for carryingout therapies.

• Over a third of families also found the locationof their home a problem. The most commonreasons underlying difficulties with locationwere either the risks to the child’s safety (forinstance, being situated on a busy road) ordifficulties with unpleasant neighbours.

• Comparisons with data on satisfaction withhousing collected by the Survey of EnglishHousing suggest that families with a disabledchild experience far greater problems withtheir homes than families with non-disabledchildren.

• While level of income was associated with thenumber of housing problems reported, evenamong the middle/higher income groups anaverage of three different housing problemswere reported.

• Parents from minority ethnic groups reported agreater number of housing problem areascompared to white families. In addition, thefrequency at which the types of housingproblems were reported differed betweenminority ethnic groups.

• A high level of housing unsuitability wasreported across all tenure groups. However,overall, families renting their homes fromprivate landlords and their local authorityreported a greater number of problems.

• The age of the disabled child and type ofimpairment was associated with the ways inwhich a home was unsuitable for a family.However, some housing problem areas werenot discriminated by age or type ofimpairment.

17

4Responding to unsuitable housing

To move or adapt?

There are a number of options facing familiesliving in unsuitable housing and our previouswork has explored the reasons underpinning thechoices families make (Oldman and Beresford,1998). In essence, families can either find theycannot, or decide not to, do anything; adapt theircurrent home; move to a more suitable home; ormove to, and then adapt, a new home. A numberof factors influence the decision made, includingfinancial resources, availability of information andadvice, access to services and feelings aboutcurrent (and future) circumstances.

Half the parents said that, at the time ofcompleting the survey questionnaire, they neededto change their housing in some way in order thatit better suited the needs of their child and therest of the family. Given the choice, moreparents said they would prefer to move (57%)than to adapt their present home (43%).

Factors affecting preference formoving or adapting

Tenure and the nature of the housing problemwere both associated with parents’ reportedpreferences to adapt or move. Figure 4.1 showsthe association between tenure and parents’preferences in terms of how to deal with theirunsuitable housing. Owner-occupiers were theonly group where adapting the current home(56%) was preferred over moving (44%). Forthose renting their homes, moving was preferredby the majority and increasingly so among thoserenting from housing associations and privatelandlords. (With respect to the latter group, 16%

of respondents indicated that their landlord hadprevented them from changing or adapting theirhome.) We know from our previous research thata number of factors will be at work here(including what parents believe their options tobe). However, this finding does highlight the factthat moving is the preferred option for manyparents.

Intuitively, a factor likely to influence parents’preferred way of dealing with a problem withtheir housing will be the ways in which thecurrent home is unsuitable. This is, however,often a complex situation. Some of the ways inwhich a home can be unsuitable for a disabledchild and their families cannot be solved bystructural alterations and other adaptations.Families may be facing a cluster of problems –some of which might be better addressed byadapting while others would be resolved moreeffectively by moving.

We looked at the distribution of parents’preferences for adapting or for moving withrespect to each housing problem area (see Table4.1).

It is important when looking at these figures tobear in mind that, in the majority of cases,parents’ preferences will have been based on theexperience of facing more than one problem area.It is therefore essential not to ‘over-interpret’ ormisinterpret this data. In addition it is importantto bear in mind that we would have expectedmoving to appear as the preferred option giventhat, as reported above, overall this was thepreferred option.

Despite this we would argue that these datasuggest that for many of the housing problemareas there is no clear-cut distinction in terms of

18

Housing matters

Figure 4.1: Association between tenure and preferences to move or adapt

Table 4.1: Type of problem area experienced by parents’ preferred solution

Type of problem area experienced

Space forPreferred Equipment Safety in equipment Family Carer needs:solution storage home and therapies space lifting and handling Location

Adapt 41 48 41 47 47 32Move 59 52 59 53 53 68

Type of problem area experienced

Preferred Access in and Size of Lack downstairs No secondsolution around home functional rooms toilet/bathroom Condition toilet/bathroom

Adapt 47 41 46 37 42Move 53 59 53 64 58

parents’ preferences about how to address theproblem. However, for certain housing problemareas there does appear to be a pattern in termsof a preference for moving. These are eitherwhere there is a need to increase the size orfacilities of the home in order to have more spacefor equipment storage and/or use; an additionaltoilet/bathroom; or larger so-called functionalrooms (kitchen, toilet, bathroom). In addition,not unsurprisingly, where location is one of theproblem areas a family is facing, a greater numberof respondents expressed a preference to moveas opposed to adapting their current home.

Assessment of housing need

Methodological issues

Parents with a disabled child are in contact withnumerous professionals from a number ofdifferent agencies, and many parents reportconsiderable problems finding out about theorganisation and provision of services (forexample, Beresford et al, 1996; Mitchell andSloper, 2001). It is therefore not surprising thatresearchers (and practitioners) have found itdifficult to obtain an accurate picture from parentsabout the roles of the different professionalsinvolved with their family and the assessments

100

Owner-occupier Rent from council

80

60

40

20

%



Prefer to adapt

Prefer to move

0

19

Responding to unsuitable housing

they have had. It is difficult, within theconstraints of a large-scale postal survey, toidentify ways of overcoming this difficulty. Wesought to overcome this by asking parentswhether they had had an assessment of theirhousing needs, to name the type of professionalwho carried out the assessment, and to describethe outcome of that assessment. We usedresponses to the two latter, subsidiary, questionsto filter out any clearly erroneous responses tothe question about whether or not the family hadhad an assessment of their housing needs.However, there still remains scope for some errorin this data, particularly the possible confusionbetween an assessment for community equipmentservices and housing needs; both are typicallycarried out by an occupational therapist, and theboundaries between some adaptations and theprovision of equipment can be rather blurred.

Number of assessments

One in four respondents reported that anoccupational therapist had assessed their andtheir child’s housing needs. Typically, parentsreported one of three possible outcomes to thatassessment. Over a half reported changes/adaptations had been made to the home. Justunder a third reported that nothing had happenedfollowing the assessment. A small proportion(7%) had moved, or were waiting to move withinlocal authority or housing association housing. Afew parents were in the assessment or adaptationprocess at the time of the survey.

Table 4.2: Outcome of housing need assessment

Tenure

Owner-occupiers Rent from local Rent from housingOutcome (%) authority (%) authority (%) Total (%)

Changes/adaptations made to 60 51 39 54current home

Nothing changed or happened 30 27 43 31Moved or waiting to move within n/a 6 16 7local authority/housing authority

Still in assessment process 2 2 1 2Still in adaptation process 4 6 – 4Other 4 2 1 2

n=343 n=246 n=86 n=693

Note: A very small sample size (n=18) means the figures for respondents renting from private landlords are not shown.

The associations between the outcome of ahousing need assessment and tenure are shownin Table 4.2.

The outcome of an assessment of housing needdiffered according to tenure. Changes oradaptations to the current home were most likelyamong owner-occupiers and least likely amongthose renting their homes from a housingassociation. However, the latter group were mostlikely to report they had been rehoused or werewaiting to be rehoused. Around a third (rising to4 out of 10 housing association tenants) ofrespondents reported that nothing had happenedas a result of the assessment.

Moving home

Of those families who had moved since theirdisabled child was born, almost two thirds saidthey had moved in order to live in a home thatwas more suited to their child’s needs or theirneeds as a parent/carer of their child. Familieswho rented their homes were more likely to havemoved in response to their housing needscompared to owner-occupier families – especiallythose renting from housing associations and thoserenting from private landlords. The data reportedabove suggests that decisions to move are, in thegreat majority of cases, made outside of anyassessment process.

20

Housing matters

Advice about moving

Indeed, 8 out of 10 families who had moved inresponse to their child’s needs or their needs ascarers said they had done so without anyprofessional advice. Where advice had beenprovided, this was most commonly from either anoccupational therapist or a social worker.

Barriers to moving

Respondents were asked whether, at the time ofcompleting the questionnaire, they would like tomove to more suitable housing but could not forsome reason. Four out of 10 parents reportedthey were wanting to move but faced somebarrier to achieving this. The barriers reported byparents included: financial reasons, the localauthority or housing authority not accepting thefamily’s need for rehousing; a lack of, or waitingfor, a suitable property to rent. Table 4.3 showsthe association between the various barriers tomoving and tenure.

Across tenure groups, different factors were atplay in determining whether families were able tomove in response to addressing their unmethousing needs. For owner-occupier familiesfinancial reasons were the dominant barrier tomoving, being reported by almost 9 out of 10respondents in that situation. A small proportionof owners-occupiers were seeking to changetenure by moving into a local authority or housingassociation property.

Among those renting their homes the picture interms of the barriers to moving is quite similar.For some, the costs of moving or the prospects of

Table 4.3: Barriers to moving and association with tenure (%)

Rent from Rent from Rent fromOwner-occupier local authority housing authority private landlord

Financial reasons 89 28 32 35Local authority/housing authority n/a 15 11 16do not accept need for rehousing

Local authority/housing authority 8 40 39 36have not offered a suitable property

Waiting for suitable local authority 3 17 18 13property to become available

n=318 n=265 n=85 n=55

Note: Approximately a third of applicable parents chose not to complete this particular open-ended question. These data musttherefore be treated with caution.

increased rent were a barrier – this is mostfrequently reported by those renting from privatelandlords. Some families had been unsuccessfulin persuading their housing authority that theyneeded rehousing. In our analysis we did notfind any factors, including type of impairment,that were associated with families being judgedineligible for rehousing. However, the mostcommon reason for being unable to move givenby those renting their homes was failure by theirlocal authority or housing authority to offer thema home which was more suitable than the one inwhich they were currently living.

Moving within social housing

Just under half of respondents who were rentingtheir homes from a local authority or housingassociation had, at some stage, asked to be movedto a more suitable property. (This contrasts withthe data reported above where we were askingabout current moving intentions.) Of those, onein two had been rehoused. However, at the timeof completing the questionnaire for the survey theremainder had still not moved. This was for oneof three reasons: either the family was stillwaiting to move (70%); or they had been offered,but refused, a transfer (23%); or their request for atransfer had been refused (7%).

Changing tenure

A small proportion of families (4%) had changedfrom being homeowner to renting their homefrom a council or housing association. We askedthose families whether they were happy to havechanged from being a homeowner to renting their

21


Figure 4.2: Feelings about changing tenure: owner-occupier to renting local authority/housing authorityproperty

home. A greater proportion of families wereunhappy about their change in tenure comparedto those who were happy (see Figure 4.2).However, over a third of families who had movedtenure into social housing were happy with thischange.

Changing and adapting the home

Among families who reported that their housingneeds had been assessed, the most commonoutcome (reported by over half of families) waschanges or adaptations to the home (see Table4.2).

The main source of local authority funding forhouse adaptations is the Disabled Facilities Grant(DFG). Families can seek help with all or part ofthe costs of adaptations to the home by applyingfor a DFG. This is a means-tested grant, and it isan application for a DFG which, typically,activates the process of assessing a family’shousing needs. Where families are renting theirhome from the local authority it is commonpractice not to follow the formal application, andfamilies may not be aware of the source of

funding for any adaptations carried out to theirproperty. However, owner-occupiers will have toundergo the formal and quite complex process ofapplying for a DFG.

Awareness of the availability of local authoritygrants

Just over a third of parents were aware thatfamilies with a disabled child can apply to theirlocal authority for help with meeting the costs ofchanging or adapting their home.

A number of factors were associated with levelsof awareness of this potential source of funding.Families from minority ethnic groups, and familiesrenting their homes, were less likely to knowabout this funding source. This latter finding is,in part, likely to be due to the different processby which local authority tenants have adaptationsfunded through a DFG (as described in theprevious section). In addition, the type(s) ofimpairment the child had was associated withparents’ awareness. Those whose children werephysically impaired were more likely to knowabout local authority adaptation grants comparedto those whose child had no physicalimpairments. Finally, awareness increased withfamily income.

Applying for financial assistance from the localauthority

One in five respondents reported that they hadasked their local authority for help with payingfor changes or adaptations to their home. (Afurther 3% were in the process of making anapplication at the time of completing the surveyquestionnaire. Once again, as discussed earlier inthis chapter, one needs to bear in mind thepossibility of inaccuracies in parents’ reportshere.)

Within our survey sample, 502 families (17%) saidthey had applied for and completed anapplication to their local authority for help withpaying for the cost of adapting their home. Thiscompares with a figure of 625 families whoreported having asked their local authority forhelp with paying for adaptation costs. Thesefigures support anecdotal evidence that aproportion of families ‘fall out’ of the DFGapplication process. The extent to which this is

Unhappy Indifferent Happy

53% 37%

10%

22

Housing matters

happening cannot, however, be accuratelyascertained as these figures are also likely toinclude families renting their homes from localauthorities where the practice is to bypass theformalities of the DFG for their own tenants.Thus some families will have reported applying totheir local authority for financial assistance, butwill not have had to go through the DFGapplication process.

Respondents who stated they had withdrawn theirapplication gave a variety of reasons, includingthe fact that the process was taking too long, wastoo bureaucratic, or they “didn’t like the system”.Others withdrew their applications when itbecame clear that they would be ineligible ongrounds of their income.

Outcome of completed applications

The outcomes for families who had completed theapplication process are detailed in Table 4.4.Given the different processes by which financialassistance is provided across tenures, we presentthe data from owner-occupiers and those rentingtheir homes from their local authority separately.

Among owner-occupiers, a third had all the costsof an adaptation met by their local authority.However, a quarter of families failed in theirapplication for a DFG and a further 1 in 10families could not afford their assessedcontribution to the cost of the adaptation. Justover one in four families who had applied for aDFG shared the costs of an adaptation with theirlocal authority.

Table 4.4: Outcomes of completed applications for financial assistance from local authority for housingadaptations: owner-occupiers and local authority renters

Rent fromHomeowners local authority

n % n %

Local authority met all the costs of the adaptation 103 34 89 63Local authority would not meet any of the costs 76 25 44 31Local authority met part of the costs and family paid remainder 84 28 4 3Local authority offered to meet part of the costs but family 35 12 2 1could not afford their contribution

Local authority offered to rehouse 0 0 2 1Received interest free loan from local authority (unclear whether 3 <1 3 1local authority made a contribution)

Total 301 100 141 100

The picture for those renting their homes from alocal authority shows that a similar proportion (toowner-occupying families) ‘failed’ in theirapplication for financial assistance. However, agreater proportion of local authority renters hadsuccessfully applied for financial assistance withan adaptation compared to owner-occupiers. Thisreflects both the fact that levels of family incomeare likely to be lower among those renting theirhomes compared to owner-occupiers and thedifference in funding practices used acrosstenures. The use of other non-DFG fundingroutes for local authority renters is evidenced bythe very small proportion of families in this tenurebeing requested to share the costs of anadaptation.

We also asked these families to tell us how longtheir application took to be processed. (Responseto this question was quite low – only 64% ofeligible respondents – and we were askingparents to recall and estimate time, thus this datamust be treated circumspectly.) For those whoprovided us with this information, just over 4 outof 10 said that they waited up to three months tohear the outcome of their application. A sixth ofrespondents had waited between three and sixmonths, with a further one in five hearing thedecision between 6 and 12 months after theirapplication. One in 10 families had waitedbetween one and two years, with a similarproportion reporting that they had waitedbetween two and three years for their applicationto be processed.

23


Other sources of funding for adaptations to thehome

Just over 1 in 10 parents said they had receivedhelp with paying for the costs of adapting theirhome from members of their extended family(34%) or charitable organisations (66%).

Advice about changing or adaptingoutside the assessment process

No family in the survey reported that they hadreceived advice from an occupational therapistabout changing or adapting their home outside ofthe assessment process.

Summary

In this chapter we have reported our findings onwhat families may do in response to living inunsuitable housing. Key findings are as follows:

• Among families expressing a desire to dealwith their housing needs at the time ofcompleting the survey, a greater proportionsaid they would prefer to move rather thanadapt their current home.

• The way(s) in which a home is unsuitable for adisabled child and their family affect parents’preferences to dealing with the problem.Specifically, where the difficulty is caused by alack of space, small-sized rooms and/orlocation, moving home (as opposed toadapting the existing home) is the preferredoption.

• Tenure affected the sorts of barriers familiesfaced when trying to move. Financialconstraints were the dominant barrier forowner-occupier families. A lack of suitableproperties was the most frequently reportedproblem for families in social housing.

• Decisions to move home in response tounsuitable housing are typically made withoutany professional advice or support.

• Only a minority of families believed they hadhad their housing needs (in terms of being afamily with a disabled child) assessed.

• One in five families had applied for financialassistance from their local authority towardsthe costs of adapting their home.

• Awareness of the possibility of financialassistance from local authorities with the costsof housing adaptations was low. Only a thirdof families knew of this, and this figure waslower among families from minority ethnicgroups.

• Only a third of owner-occupier families whohad applied for a DFG had had the costs ofadapting their home fully met by their localauthority. A quarter of owner-occupiers’applications for a DFG were unsuccessful, witha further 1 in 10 families finding they wereunable to afford their assessed contribution.

• The data suggest that professional advice andsupport to assist with changing or adaptingtheir home is not offered outside the process ofapplying for and receiving financial assistance(for example, the DFG) from a local authority.

24

Housing matters

5Current provision andfunding practices

Introduction

The first part of this report has been about thechildren and their families, and has been aboutneeds. This chapter looks at the other side of thestudy: the work with providers from differentagencies. The objective was to try and match, foreach local authority in the study, data on needsand supply to get a feel for unmet need and thescale of resources that would be needed toaddress the situation. For the reasons describedin Chapter 1, and as will become apparentthrough the course of this chapter, this did notwork.

Homes unfit for children (Oldman and Beresford,1998) and Making homes fit for children(Beresford and Oldman, 2000) identified threemain reasons why the housing needs of disabledchildren and their families remain unmet. Thesewere:

• service fragmentation;• low levels of awareness of the central

importance of housing and home;• inadequate resources.

Unsurprisingly the ‘supply fieldwork’ for thisstudy confirmed the early findings. It is importantthat the (limited) findings from the ‘supply-side’of the fieldwork are understood in the contextboth of current policy and our previous researchfindings. Thus the format we have chosen forpresenting the data is to organise the data arounda series of themes, providing, where appropriate,background information followed by a report ofrelevant findings from this particular project.

In each of the 44 fieldwork sites (that is, housingauthorities) we aimed to interview the following

professionals: officers with strategic and day-to-day responsibilities for adaptations in all tenures,housing allocation officers, occupationaltherapists and managers in charge of services fordisabled children. In each authority this couldinvolve up to six interviews and many moretelephone calls ‘tracking down’ the right person.

Fragmented responsibilities

Key to the difficulties in carrying out the supply-side fieldwork was the issue we know fromprevious work affects families and professionalsalike: that is, service fragmentation.

Our previous research has shown thatorganisational structures, between and withinlocal authorities, vary enormously, and this isconfusing to families and professionals trying tochart a way through local government to get to aservice. It should perhaps be no surprise that thissame difficulty also confounds researchers tryingto get a clear picture of resources devoted toproviding services and meeting families’ needs!

Typically, no single agency or department iswilling to ‘own’ the issue of housing needs ofdisabled children and to be a figurehead or localchampion. This is particularly critical given thatour data has shown that such housing need hasmany manifestations. It may be an issue of poorcondition or disrepair (bringing it perhaps withinthe remit of the private sector housing renewalteam, or perhaps within the landlord function). Itmay be an issue of location, the externalenvironment or space (perhaps requiring theinput of the housing allocations sections of theauthority or its partner providers). It may be thatthere are insufficient suitable properties in the

25

locality (bringing it within the remit of a housingpolicy team, and perhaps development sections oflocal housing associations). And it may be thatan adaptation is required. Only then will there bea clearly defined role and responsibility to takethe issues forward, albeit in a way that is likely toinvolve its own complex myriad of professionaland technical inputs.

Of course, the complicated structure of housingfunctions would be less important if there were a‘guiding hand’ available within social servicesdepartments. Here, authorities are increasinglyadopting service teams focused on services fordisabled children. However, of the 43 servicemanagers involved in this study, only a handfulhad knowledge of, or expressed particularinterest in, housing need: most said it was neithertheir area of jurisdiction nor expertise. In fact, asprevious work has shown, it is occupationaltherapists who are often the key professionalgrouping involved in housing issues. However,their work is frequently focused narrowly onadaptations (rather than wider housing issues);they are themselves located in different teamsdepending on the organisational structure of thelocal authority; they are unlikely to have a clearroute through which to communicate informationto assist with strategic priorities/decisions; andthey have long been in short supply.

This fragmentation of responsibilities madeidentifying suitable interviewees within the surveyauthorities a difficult task in itself, and thisdifficulty was compounded by the paucity ofinformation available as the following section willshow. Inevitably, because the focus of serviceresponse was hugely geared towards adaptation,this was the issue that yielded most data. Evenhere, however, there were very significant gaps.

Assessing aggregate housing need

Housing departments have had, for many years,the mandatory requirement to assess the housingneeds of their constituents. Housing needssurveys have been very popular; however, thesehave not focused very well on the needs ofvulnerable groups. This should change with theadvent of the new policy and funding regimeSupporting people (DETR, 2001a). Increasinglythe importance of low level preventative supportservices is being recognised and acted on.

Although Supporting people is intended forvulnerable adults it will help focus housingauthorities’ attention on locality needsassessment. However, it is not simply a questionof mapping housing needs but communicating thefindings to the social services authority and acomprehensive plan drawn up to address theseneeds. In shire counties this communication hasbeen more difficult given the fact that eachcounty will contain several non-unitaryauthorities. This is improving now. Needsassessment is not easy and more difficult in someareas, for example, rural settings (Oldman, 2002).

All the housing officers in the sample felt unableto comment whether resources for paying foradaptations were adequate. Annual budgetsseemed historically determined and unconnectedto any data on the overall needs of disabledchildren in the authority. The Audit Commissionhas consistently commented that resources shouldhave a relationship with need, and that the needfor adaptations falls far short of the supply,although budgets have increased each year. Thedelivery of adaptations locally is heavilyinfluenced by a national framework which hashad a part historically in ensuring that differenttenures receive different treatments.

Recognising and acting on housingneed in individual needs assessment

Homes unfit for children noted that families didnot know how to get a housing need noticed andconsequently acted on. They also lacked theenergy to get the ball rolling. What are neededare clear referral processes which are known toall who are likely to be in contact with suchfamilies.

Just one in four of the respondents in the parents’survey said they had had their housing needsassessed. (We have already noted that this maybe an over-estimate as families may haveconfused an equipment and housing needsassessment, as both are conducted byoccupational therapists.) Aside from that, a keyfinding reported in Chapter 4 was that in very fewcases was housing need successfully dealt with.The findings from the fieldwork with practitionersoffers an explanation for families’ experiences.

Current provision and funding practices

26

Housing matters

In all the authorities social workers andoccupational therapists were asked aboutindividual needs assessment. Although aroundhalf said their forms asked about tenure and otherhousing circumstances, in only one authority didthere seem to be any attempt to assess housingneed in a general systematic way (see Figure 5.1).

Occupational therapists were often involved withfamilies, not in terms of carrying out a holisticassessment of housing need, but rather forassessing equipment. Indeed a family may beinvolved with more than one occupationaltherapist. In terms of assessing housing need,referrals for adaptations typically came fromhealth agencies or social workers and at this pointthe occupational therapist would be called in, butthen for a specific assessment for an adaptation.Typically occupational therapists work in adultservices: there were very few paediatricoccupational therapists involved in the study.

Occupational therapists are in short supply andmany worked part time. They often worked inareas which were not coterminous with thehousing authorities in the sample. They alsolacked status. A further problem was that theyappeared to have little obligation to keep detailedand comprehensive information systems thatcould capture data for strategic purposes.

Adaptations: funding practice andprocedures

Public versus private sector ownership

Funding practice and procedures varied betweenauthorities, especially around the issue of tenure.In all but three of the 43 authorities participatingin the research, adaptations for owner-occupiers,

the private rented sector and registered sociallandlord accommodation were funded by theDisabled Facilities Grant (DFG) and administeredby a housing renewal team in a variety of sectionsand departments. Council adaptations wereadministered by the housing department and paidfor out of the council’s own resources in nearly allcases, although in 10 authorities the DFG processwas applied. Very often the two departments, forthe private sector and the public sector, had verylittle knowledge of each other’s policies andprocedures. It is confusing for people who aretrying to find out how to have their housingneeds met, and it raises issues of equity oftreatment. One implication borne out byprevious work, for example, is that counciltenants are more likely to be required to move.

Record keeping and information management

Interviewees were very helpful in trying to trackdown figures, but generally the information theycame back with was unusable within a standardframework. Very few authorities were able togive any figures on the number of applicants fromdifferent tenures for adaptation, nor could theyprovide data about the success or otherwise ofthe application. Authorities often tried to comeback with figures but these were usually nothelpful. Client group is never recorded oninformation systems so it is not possible tocompare work activity between the differentgroups. Few officers saw the need to record thispiece of information although two non-unitaryauthorities had been asked by their social servicesdepartment to break down their adaptation databy client group. Where it was impossible toobtain figures from housing officers, occupationaltherapists were approached. This was a morefruitful approach but occupational therapists donot record this information as a matter of course,

At the time of the study one local authority was piloting an integrated needs assessment form for disabled

children which was being used by all agencies. There was a section on housing which looked at type of house,

whether adapted, tenure, condition, heating and access. It also included space for open-ended comment. The

form was filled in with the parents and everyone was invited to say what they thought about the home. If a

housing need was identified then a copy of the form was sent to the disability equality officer in housing to

plan appropriate action, which may be a referral to an occupational therapist to assess for an adaptation or it

may result in a referral for rehousing. Families are also given a handbook about all the services in the city for

disabled children.

Incorporation of housing into integrated needs assessment: an example of practice

27

and they often relied on their memories. Theinformation was also piecemeal and did notcorrespond, as noted above, to local authorityboundaries.

The paucity of information problem is illustratedin Table 5.1, which summarises what data wasavailable.

Three out of four authorities could say withaccuracy the number of DFGs for children whichhad been awarded and they could nearly alwaysgive total expenditure and/or budget for eachtenure. These were the only pieces ofinformation that were routinely available. It wasnot common practice to record information suchas parental contributions, whether applicationsfailed because the parents could not afford theirshare of the cost of a job, or how manyadaptations exceeded £20,000.

Tables 5.2 and 5.3 opposite are illustrative of thesort of data that was available. They also offerexamples of current levels of expenditure onadaptations for disabled children against overalllevels of spending.

Tenure

A number of officers were concerned about theissue of equity between tenures. This is asignificant issue bearing in mind that disabledchildren are more likely to live in rented housing,and more likely to report a greater incidence ofhousing problems. In all areas participating inthe research the budgets for council and privatesector adaptations were roughly the same, buttenants were more likely to be required to move,particularly if the job was going to exceed a setamount.

Use of discretionary DFG

Only five of the 43 authorities (that is, just over10%) had ever used the discretionary element ofthe DFG for completing an expensive job or forhelping parents out. Parental contributions werevirtually unheard of in the council sector butthought to be quite common in the private sector.


Table 5.1: Data obtained from the authorities on adaptations for children (%)

Proportion of authorities able Proportion of authorities ableto supply previous year’s to supply previous year’s

information for all groups information for disabled children

Number of DFGs 100 ~75Expenditure on DFGs 100 ~75Amount of applicant contributions ~50 <10Number of council adaptations 100 ~50Expenditure on council adaptations ~75 ~50Number of schemes exceeding cost limit 100 ~50Number of applicants dropping out of process ~10 <10

Table 5.2: Adaptation data for previous financial yearfor area A (metropolitan authority: population~250,000)

Children All groups

Number of DFGs:owner-occupiers 10 209

Number of council grants 16 Not availableExpenditure on DFGs £44,276 £710,000Council expenditure £22,450 £754,000Estimated number of severelydisabled children living in area = ~1,500a

Note: a This figure is calculated from the number of childrenliving in the area recorded on the Family Fund Trust database.This figure (in this case 756) is doubled given that conservativeestimates of take-up of the Family Fund Trust is 50% ofeligible families.

Table 5.3: Adaptation data for previous financial yearfor area B (new, unitary authority: population ~100,000)

Children All groups

Number of DFGs 6 32Number of council grants Not available 729Expenditure on DFGs £94,499 £373,000Council expenditure 0 Not availableEstimated number of severelydisabled children living in area = ~650

28

Housing matters

Housing officers suspected that some parents didwithdraw their applications once they had beennotified of their contribution to the cost of theadaptation. Some housing officers suspected thatfinancial reasons meant that some parents fall outof the ‘DFG process’ long before they themselvesgot involved.

Contribution of health authorities to funding

In none of the health authorities (coterminouswith the housing authorities in which the researchwas located) was funding available for eitheradaptations or moving home. This is despitehealth agencies’ apparent interest in the linksbetween poor housing and poor health. Withoutdata on overall needs, however, no compellingcase for additional resources can be made bysocial services to other agencies.

Comparison between children’s and adults’adaptations

It was the common view that children’sadaptations were more costly than otheradaptations but little data was obtained tosubstantiate this assertion. Questions were raisedbut not answered about the level of help that wasoffered. Some officers suggested that childrenmissed out on the sort of help that older peopleget, such as the installation of bath and grab rails.(Data from a recently completed survey ofcommunity equipment needs [met and unmet] ofdisabled children [Beresford et al, 2001] supportsthat assertion.) Instead, children could be thebeneficiaries of what one respondent called‘spectacular’ adaptations for ground floorextensions. It was felt that there were some highprofile cases where the need for change andmodification to the house was obvious, but thatmany more cases were ignored or never gotreferred. Where there were data the averageexpenditure on children’s adaptation wasconsiderably higher than for other groups, buthere again interpretation is not easy. Olderpeople, for example, may be getting cheapresponses to problems but these may not fullymeet their needs.

Perceived extent of unmet need foradaptations

For example, in all authorities of around 100,000population interviewed as part of this study, totalexpenditure on adaptation rarely exceeded half amillion. These resources appear barely adequatefor the job in hand. However, the professionalswe interviewed were unclear as to whetherdisabled children’s needs for housing adaptationswent unmet in their authority. Some felt that theywere a high profile group and that resourceswould always be found because the adverseimpact on the family if an adaptation were notdone would be there for all to see.

The adaptations delivery process

In none of the 43 authorities contacted were anyof the procedures related to the assessment forand delivery of adaptations for a disabled childdifferent from those used for other groups. It wasfelt, however, that most children’s referrals do geta ‘priority one’ (the most urgent) and were,therefore, guaranteed to receive attention.

The assessment process

A key issue was that the assessment process andform used for disabled children was no differentfrom that used for other groups requiring somesort of housing adaptation, with the focus ofattention on functional ability or impairment.

While written procedures may have been thesame, it was apparent that occupational therapistsand housing officers did see that the assessmentprocess could be longer and more complex. Insome cases attention was paid to the importanceof play, the needs of other members of the familyand the growing and changing needs of children.In areas with larger than average numbers ofblack and ethnic minority families, changes weremade for both children and their grandparents.Key issues for both housing professionals andoccupational therapists were real doubts aboutwhat was going to work and how long theadaptation would be useful to the child. It isoften not known what course the impairment willtake, and even when this is known, what more

29

will need to be done to accommodate change andgrowth.

In one authority a social worker described theassessment process as follows:

“We have an initial OT assessment whichwill concentrate on the presenting problem.But the OTs have to rely then on what is thepresenting problems which may not be thewhole story. With children they have towork through all the activities of dailyliving. So it’s a focus on improvingindependence or the caring abilities. Theonly reference to housing on the form iswhat the tenure is, size, locations of rooms,although they do try and have plans of thehouse to work through what would be thebest thing to do. The OT will highlight tothe adaptations officer if a house has anobvious problem with it or if the familybring up a problem with the OT.”

This approach to the assessment was verycommon. If families had no other access tohousing structures or advice (and we can assumethat many did not), the assessment would nothave engaged with the needs, preferences andaspirations underlined by the findings of thisstudy. In particular, it would not necessarily havepicked up the central importance of space or theexternal environment, nor allowed for a fulldiscussion of the pros and cons of moving as anoption.

Issues of delay

Delay is a commonly reported problem as far asadaptations are concerned, and here, as withevery other part of this study, measurement, dataand management information systems wereproblematic. Some of our 43 authorities wouldsay that they were pleased with their efforts ataddressing delay, but the key question was ‘Whenis the clock set to tick?’. Typically delay wasmeasured in terms of how long after assessmentthe adaptation was completed. The biggestperceived bottleneck, however, was in waiting foran assessment although no data was provided totest this assertion. In most areas there was asevere shortage of the officers who carry outassessments. This seems to allow authorities tobe very vague about the extent of the gapbetween demand and supply. Some authorities

would maintain that they kept up with demands,but they would not be passed applications unlessthere was some chance of them being dealt withthat financial year. It was also asserted thatchildren had less time to wait for assessmentsthan adults.

Assessment of outcomes

None of the participating authorities attempted tomonitor the success, or otherwise, of anadaptation. Contact with the family wasdiscontinued.

Providing an information and adviceservice

Respondents seemed very unclear as to whetherthey provided any housing information or adviceservices to families separate to the adaptationsdelivery process. Thus families with a housingneed that would not be resolved by anadaptation, as well as those who hadunsuccessfully applied for a DFG (being turneddown on financial grounds) are not able to accessinformation or advice in relation to addressingtheir housing needs.

Deployment of housing stock

In none of the authorities were the strategichousing needs of children considered withrespect to the deployment of housing stock.

Management of vacant adapted properties

Increasingly council stock has been severelydepleted through Right to Buy policies. This hasbitten more deeply in some areas than others,particularly in rural areas (Oldman, 2002).Housing departments have little room tomanoeuvre when trying to offer a more suitableproperty. Despite the extreme shortage of goodquality properties, these can stand vacant becausethe right family cannot be found in time. Aroundhalf of our authorities had no knowledge of whatadapted properties they had, and some weretrying to develop disability registers. Oneauthority had instituted a pilot scheme whereby


30

Housing matters

every time a non-private sector property becamevacant it was evaluated in terms of its potentialfor adaptation (in terms of improving physicalaccess); each property is assigned to one of fourcategories: wheelchair standard, limited mobility,very limited, or not all adaptable.

Social services officers often reported theirfrustration with housing policies: housing officersneed to keep voids to a minimum but some timewas needed to match person with property.However, disability registers (located in housingauthorities, and typically excluding disabledchildren) were reported to ease these jointworking difficulties. In developing registers it hassimply not occurred to housing officers thatchildren have housing needs which could be metby moving.

Allocation policies

One of the questions put to professionalsconcerned whether their housing allocationpolicies particularly picked up on or recognisedthe needs of disabled children. In onemetropolitan authority extra points were awardedin the case of disabled children applying forhousing. Typically, lettings procedures operatedwithin very narrow definitions of housing need,based on the medical priority system focusingoverly on inability (for example, to climb steps)rather than a more holistic, family and child-centred, approach.

Summary

The data presented in this chapter is inevitablybiased towards the data we were able to collect.Thus, while the funding of families to move, asopposed to adapting their current home,rehousing solutions, and the provision of aninformation and advice service were clearlyimportant issues to parents (as revealed in theirresponses to the survey), they were not areaswhere we were able to collect data. This doesnot, however, diminish their importance.

A key finding from the fieldwork withpractitioners and managers involved in meetingthe housing needs of disabled children concernsthe lack of data. This is apparent at a number ofdifferent levels:

• no data is routinely collected which could beused to inform projections of housing needsand demands on housing adaptation budgetsand suitable properties;

• no authority could provide evidence on theextent to which supply matched (ormismatched) levels of housing need;

• there is no collection of information on theoutcomes of an adaptation or a rehousingsolution from the child’s or family’sperspective.

A second key finding concerns the lack ofexpertise and clarity of roles and responsibilities:

• typically, no single agency or department tookoverall responsibility for ensuring the housingneeds of disabled children living in theirauthority were met;

• housing need is rarely (properly or fully)included in a needs assessment carried outunder the auspices of the 1989 Children Actwithin the Framework for the Assessment ofChildren in Need and their Families;

• clearer lines of responsibility, and some smalldevelopments in terms of child-centredassessments, are found where the decision hasbeen made to carry out an adaptation.

Furthermore, while hampered by scant andinadequate data, we would argue that theevidence presented in this and previous chapterspoints to significant under-resourcing in terms ofmeeting the housing needs of disabled childrenand their families. This applies not only tofinancial resources, but also staff resources –particularly occupational therapists.

Finally, disparities in funding practices, serviceprovision and delivery between tenures havebeen revealed. Equity of treatment concernedofficers, with families living in rented housingbeing required to move as opposed to having anadaptation to their current property.

31

6The study’s policy implications

Introduction

In this chapter we move on to consider theimplications of the findings reported in theprevious four chapters. In particular we focus onthe policy implications. A strong message fromour earlier work with practitioners and managers,about identifying ways of ensuring that thehousing needs of disabled children are better met(Beresford and Oldman, 2000), was the need forpolicy-driven change, as opposed to relying onindividual, idiosyncratic change at a local level.The issues of multi-agency involvement andfinancial resources mean that while local changesin both policy and practice can have an impact(and indeed a product of our earlier work was thesharing of solutions and good practice –Beresford and Oldman, 2000), the scale of theproblem requires action at a higher level if thehousing needs of disabled children receive therecognition and resources they so clearly require.Indeed, one of the key purposes of this projectwas to produce the national evidence to persuadethe need for change and to inform that change.

We begin by discussing the inadequacies of thecurrent legislative framework in terms of meetingthe needs of disabled children. In particular weseek to illustrate the way that current policy haseither contributed to the high levels of housingneed reported by families with a disabled child oracts as a barrier to change. Next we consider thefunding issues which the findings from this pieceof research inevitably raise. Finally, we drawattention to issues related to housing stock andhousing quality.

An inadequate legislative framework

The nub of the problem concerning the generalfailure to meet the housing needs of disabledchildren is that there is no one single legislativeframework for responding to the housingproblems families have.

Children’s legislation

The key legislation applying to disabled childrenis the 1989 Children Act. Part III, Section 17states that the local authority has a general dutyto “safeguard and promote the welfare of childrenwithin their area who are in need” by providing arange of services appropriate to those children.Disabled children are defined by the Act as beinga group in need. Schedule 2, Part I sets out thetype of services that can be provided. The aim ofthese services should be to “minimise the effecton disabled children ... of their disabilities ... andgive them the opportunity to lead lives as normalas possible”. The Act states that in somecircumstances children will be helped by theprovision of services to other members of theirfamily.

Despite these very apparently wide powers,housing is largely ignored. It is not in any routineor systematic way part of individual needsassessment, although social services departmentsare required to work with other services to assessand provide for disabled children’s needs.Assessments are intended to be comprehensiveand holistic:

In conducting assessments and managingthe care provided social servicesdepartments will need to ensure that all

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Housing matters

necessary expertise is marshalled and thatall those providing services are involvedfrom both within and beyond the socialservice department. (1989 Children ActGuidance and Regulations, vol 6, p 9)

However, although concluding there was a greatdeal of room for improvement in the assessmentprocess, the 1994 Social Services Inspectoratenational inspection of services to disabledchildren and their families (Goodinge, 1998) didnot mention housing once. One explanation forwhy inadequate attention has been paid to thedisabling impact of children’s domesticenvironments is the strong philosophy within theChildren Act of ‘children first, disabled after’.Although this social model approach to disabilityis to be welcomed, it has the effect of ignoring ordiluting the effect on health and well-being ofnon-barrier-free housing (Oldman and Beresford,2000).

This report is being written during the last monthsof the Quality Protects initiative: a five-yeargovernment initiative aimed at improvingchildren’s services. This initiative could havebeen an important banner under which topromote the housing needs of disabled children.Sadly, however, housing was not included as asub-objective under which social servicesdepartments were expected to produce evidenceof change or improvements in terms of servicesfor disabled children. This contrasts with thesignificant attention given to what might equallybe seen as a ‘tangential issue’ – namely, play andleisure services.

Thus, in terms of addressing the housing needs ofdisabled children, the legislation appears weakand nebulous. It is in marked contrast with thepotentially powerful legislative framework fordisabled adults encompassed in the 1986 DisabledPersons (Services, Consultation andRepresentation) Act and the 1990 NHS andCommunity Care Act.

Disability and carers’ legislation

Disability legislation, such as guidance on theDisabled Facilities Grant (DFG), does notmanifest high levels of awareness of theimportance of housing in children’s lives. Theredo not appear to be any ‘levers’ within the recentdisability legislation which could be used to

promote attention on, and resolution of, thehousing needs of disabled children. To dateattention has focused on ‘public life’: for instance,(physical) access to public places, public transportand community facilities, and equality ofopportunity. An example here is the considerableamount of funding currently being given toschools to improve access for children withphysical impairments. Equally pressing, wewould argue, are the home lives of disabledchildren.

The 1970 Chronically Sick and Disabled PersonsAct is a powerful piece of legislation which isbased roughly on the social model of disability.However, it tends to get overlooked byauthorities. Its other problem is that, like otherlegislation, it makes no mention of children.

Assessment of parents’ housing needs could, intheory, be met through the 1995 Carers’Recognition and Services Act. This legislationgives social services departments a duty to assessa carer on request when an assessment is beingmade under Part 3 of the Children Act. Theguidance makes clear that these assessmentsshould be multi-agency, and housing ismentioned. However, research which has lookedat the implementation of the Carers’ Act points tothe difficulties of achieving inter-agencyassessments (Hepworth and Arksey, 2000). Itcould be that the recently implemented 2000Carers and Disabled Children Act may increasethe profile of parents’ needs as carers. However,the Act does not come with additional resourcesand housing maintains its typically low profile inthe accompanying guidance.

Housing legislation

The housing policy environment only addressesthe housing needs of disabled childrentangentially and partially. It defines housing needalmost entirely in terms of a legal requirement tomodify or adapt a property. Yet the centralmessage of this report is that housing need is verymuch broader than this. Families may live inunsuitable or poor quality housing. Families maywant to move as opposed to adapt their currenthomes. Many disabled children have learningdifficulties or behaviour problems which rendertheir homes unsuitable. A suitable home may berendered unsuitable by the location of that home– both in terms of a troublesome or unpleasant

33

local environment or its position in relation toformal services and informal support networks.

Housing authorities have a statutory duty toidentify the housing needs of their populations.Although they do this they tend not to focus onchildren’s needs. They need to work jointly withtheir social services departments to assess theneeds of disabled children. Needs assessment isbecoming central to housing policy with theadvent of the new policy and funding regime forsupported accommodation, Supporting people,coming in in April 2003. Although thisprogramme will not fund children’s services, it isan appropriate framework for needs analysis.

The present housing renovation system wasintroduced in the 1989 Local Government andHousing Act and subsequently modified by the1996 Housing Grants, Construction andRegeneration Act. At the time of writing thislegislation was in the process of being repealed.In March 2001 a consultative paper (DETR, 2001b)was issued which has made a number of quiteradical proposals. One of the most welcome asfar as the interests of this study is concerned isthe suggestion that people should be helped withthe cost of moving to another property when thisis a better option than adapting their currenthome. However, the general drift of theproposed changes is to remove local authorities’detailed obligations and shift the burden offinancial responsibility more onto thehouseholder. The legislative system for homeimprovement offers no help to council tenantsand yet much of the country’s poor housing is inthat sector. Resources for council house repairand improvement have to be found within localauthority capital budgets. Nationally there is aserious backlog of council properties waiting forrepair. It is to be hoped that new advice onadaptations (soon to be released) will be in theform of a joint publication from the Departmentof Health and the Office of the Deputy PrimeMinister, as was common practice in the 1980s.

The residualisation of social housing over the last20 years, including the massive sale of councilhousing through the Right to Buy programme, hasled to very few opportunities for local authoritiesto find suitable housing for disabled people.However, stock transfer and close working withregistered social landlords should mean that newdevelopment focuses more on housing which issuitable for disabled people. In addition, local

councils and developers need to work closely onthe subject of space standards. In the 1960ssocial housing was built to very generous ‘ParkerMorris’ space standards. Although there are nownew design standards (for example Part M ofBuilding Regulations and Joseph RowntreeFoundation Lifetime Homes), in space terms thesecome nowhere near ‘Parker Morris’.

Service fragmentation: an inevitable result?

A consequence of the current legislative system isservice fragmentation. This study has found thatthe responsibility for meeting the housing needsof disabled children lies all over an authority, andin different authorities it can be located indifferent places. Where there has been avoluntary stock transfer it will go beyondstatutory authorities. No one ‘owns’ the issue.Responsibility for mapping, assessing andplanning housing needs for all groups liessomewhere within housing policy sections andsomewhere in children’s services within socialservices. Responsibility for easing physical accesslies with different officers in differentdepartments depending on the tenure of theapplicant for adaptation, and responsibility forarranging a move to another property because itor their neighbourhood is unsuitable liessomewhere else all together. And at the moment,it seems that no one is acknowledging, let aloneassuming responsibility for, the housing needs ofchildren with learning or behavioural difficulties.The needs survey showed clearly that theproblems people had with their houses and theirenvironments are complex and manifold, and thatresponding to one aspect will not dramaticallyimprove matters.

In addition, disabled children may not only needtheir housing modifying, they may also needequipment, and the two are complementary.Neither can properly work without the other butthey are often assessed separately and deliveredby different agencies and different professionals.Equipment traditionally has been supplied at noextra charge but there appears to be someevidence that authorities are beginning to imposecharges for equipment. European legislation hashad a drastic impact on adaptations budgetsthrough the enactment of the 1992 ManualHandling Operations regulations which forbidcare workers to lift. Housing workers complainthat budgets are ‘raided’ for expensive fixed hoist

The study’s policy implications

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Housing matters

systems (Bull, 1998). The irony is, of course, thatthere is no corresponding requirement to protectinformal carers, that is parents, from back andother injuries caused by lifting and handling. Afurther key issue is that care services will not beprovided to homes where there is no liftingequipment.

There are clearly difficulties with communityequipment provision, as highlighted by the AuditCommission’s report (2000). More specifically, asurvey carried out in 2001 showed high levels ofunmet need among disabled children and theirfamilies for community equipment (Beresford etal, 2001). A consultation exercise withprofessionals carried out as part of that projecthighlighted the interdependency betweencommunity equipment and housing adaptationsservices. One participant stated:

It is obviously vital that equipment provisionand any adaptations/work needed to makethe equipment usable are seen as a whole,and that there are sufficient resources forboth to be provided promptly andeffectively. (Beresford et al, 2001, p 52)

The extent to which change and improvements inaddressing housing needs can be achievedwithout, at the same time, paying attention to thecrisis within community equipment services, issurely limited. A real opportunity exists formovement on this issue if the communityequipment and housing adaptation services arescrutinised and included in the planned NationalService Framework for Children, the preparatorywork for which has just begun.

Finally, the increasing trend to merge housing andsocial services departments would appear to be apotentially positive step in resolving the issue ofservice fragmentation. However, there is littleevidence that joint working has improved as aresult.

Funding structures: complexity andiniquity

Disabled Facilities Grants

The main mechanism for funding adaptations isthe DFG. The DFG is the only mandatory grantwithin the housing renewal system and can now

be given for items that benefit disabled children,such as safety. The main difficulty associatedwith the grant is that it is means-tested on theparents’ income and no allowance is made foroutgoings such as mortgages or the extra costs ofdisability. The result is that families, even thoseon just below average or average incomes, haveto pay a large contribution to the cost of anadaptation and thus have to take out veryexpensive mortgages in order to afford a job, or,more usually, do without.

DFG resource distribution takes little notice ofneeds indicators. This has been highlighted inthe Audit Commission’s report on housing andcommunity care which notes that there is aserious national shortfall in DFG resources (AuditCommission, 1998). The key policy message isthat resource distribution should be linked toindicators of disability, such as prevalence data, ata local level.

Increasingly councils are using the DFG processto try and obtain financial contributions fromcouncil tenants whose incomes are above thelimit for meeting all the costs of the work(Heywood, 1996). Council tenants are, in effect,paying for each other’s adaptations. This is a keypoint which leads to inequity and should not belost by the fact that some are now being takendown the DFG route and are consequently meanstested. In the areas of our study council tenantsoften appear to have to move rather than havetheir houses adapted. A further problem whichcan confuse families is that the delivery ofadaptations depends on the tenure of theapplicant. A council tenant has to know that it isthe housing department which they must firstrefer to, and the owner-occupier must know thatthey should apply to environmental health or thefinance department, or an urban renewal section.

Families living in private rented housing canapply for DFGs, providing the landlord agrees, orthe landlord can apply if the tenant does not havethe contractual power or duty to undertake worksto the home. Housing association tenantsincreasingly may be encouraged by their landlordto apply to their local authorities for DFGs. TheHousing Corporation now excludes registeredsocial landlords with more than £500,000 in theirrent surplus funds from applying for its aids andadaptations budget. Increasingly more peoplewill be affected by these restrictions as more and

35

more council housing stock is voluntarilytransferred to not-for-profit companies.

Geographical variation

The DFG ceiling of £20,000 (£24,000 in Wales)creates further problems, particularly in areas ofthe country where house prices and building costsare high. Discretionary DFG can be put alongsidethe mandatory grant, but in many authorities theformer is not available. The law is quite clear thatsocial services authorities retain powers to fundadaptations in circumstances where the jobexceeds the limit, or the parents cannot affordtheir assessed contributions. Under the 1970Chronically Sick and Disabled Persons Act socialservices are, as Bull puts it, the “default authority”(Bull, 1998). Social services usually loan theadditional funding rather than grant it, but themeans test is less stringent and ignores outgoings.They also will fund what is called ‘minoradaptations’, but the ceiling is usually very low.

Suitable housing: a search in vain?

Some types of housing adaptation would not benecessary if domestic buildings were accessible.‘Wheelchair’ housing, for example, constitutes avery small proportion of the social housing stock,and that which has been developed in the last 10years or so is predominantly one-bedroom. Theprovision of accessible housing is likely to increase,albeit very slowly. There are currently three sets ofhousing standards which, to a greater or lesserextent, incorporate accessible features. These arePart M of the building regulations (requiring alldomestic housing to be built to accessible standardsfrom October 1999), Joseph Rowntree LifetimeHome Standards and The Housing CorporationScheme Development Standards.

Some authorities are beginning to address themismatch between the need for adaptation andtheir supply, which leads to such wasteful use ofscarce resources. Due, in part, to years ofinadequate investment in social housing, thesupply of appropriate housing goes no way at all tomeeting demand. As a result of years of Right toBuy policies, and the consequent reduction of apool of suitable houses, authorities are forced tooffer families properties on estates sometimesquite a distance from the family’s social networks.

These are rarely adapted with the needs of thechild in mind, and families will often refuse offers.Also, when a property becomes available, despitethe high levels of demand, a family cannot easilybe found at that moment to move in, and thecouncil loses rental income. Gradually, disabilityhousing registers are being set up and maintained;these are both databases of need and supply. Thebetter registers use the social model of disabilityfor allocating properties (Shaw, 1999). However,at the moment these registers only tend to concerndisabled adults and older people.

Allocation practices can contribute to meetingdisabled families’ housing needs, but they rarelyexplicitly privilege this group. The HousingGreen Paper Quality and choice (DETR, 2000)introduced a new approach to the issue ofhousing distribution. In recent years, in someparts of the country, it has been difficult to findtenants for some social housing. Thisphenomenon of low demand has led thegovernment to stress the importance of choice inallocations. Such a change of direction needs tobe applied to the housing needs of disabledchildren. If families had a greater choice aboutwhere to move, a more cost-effective use of stockwould be achieved.

Summary

In this chapter we have sought to provideexplanations for the findings from the research interms of the current legislative and policy context.In doing so we have highlighted areas wherechange is needed. In particular, the impact of aninadequate, messy and diverse legislativeframework has been discussed and explored.The more specific issues of current fundingstructures and a depleting housing stock havealso been considered.

PostscriptThe regulatory reform (Housing Assistance(England and Wales) Order 2002) came into forceon 18 July 2002. This brings to an end thenational framework for the provision of grants toimprove private sector housing, and gives localauthorities a new, broad discretionary power toprovide assistance however they choose.Mandatory DFGs remain largely unchanged butdiscretionary DFGs also end under this legislation.

The study’s policy implications

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7Conclusions

Introduction

We use this final chapter to outline a ‘wayforward’ to better address the housing needs ofdisabled children and their families. The ideasand suggestions we present are grounded both inthe research evidence we have presented in thisreport and the findings of other research. Thecentral axis of our argument is that there needs tobe a fundamental change in the way ‘housingneed’ is conceptualised. In addition, thisreconceptualisation needs to permeate all levels,areas, departments and authorities who, in someway, have a role or responsibility for the welfareand well-being of disabled children and theirfamilies.

Reconceptualising housing need

Within this process of reconceptualisation, thereare a number of facets that need redefining.These are discussed in this chapter and include:

• incorporating the social model of disability;• adopting a child and family centred approach;• highlighting the issue of space;• embracing housing condition and location;• redrawing the boundaries of housing

unsuitability;• expanding options for addressing housing

need;• recognising the tenure issue.

Incorporating the social model of disability

Central to any reconceptualisation of housingneed has to be a broadening of the ‘accepted’definition of disability. At the moment the very

different housing needs of children with learningdifficulties, those with socio-emotional andbehavioural problems, and those with significanthealthcare and nursing needs, are notacknowledged within policy, or by serviceproviders. The focus is very much on physicaldisability and issues of access. Yet we know thatamong the population of severely disabledchildren, most will have more than one type ofimpairment or disability. Until this is recognised– in policy and accompanying guidance – thecomplete resolution of many disabled children’shousing needs has no chance of being attained.A greater acknowledgement of the social modelof disability is needed (at all levels of policy andpractice), with the focus being on identifying andremoving barriers to independence and enablingdisabled children access to the experiences andactivities they want to have and to do.

Adopting a child- and family-centred approach

We did come across some evidence that housingneed assessments were beginning to includefactors such as the need for play, and the housingneeds – particularly space needs – of other familymembers. It is factors such as these that makethe assessment of the housing needs of disabledchildren and their families different to otherpopulations. It is essential that these pockets ofgood practice identified in this and previous work(Beresford and Oldman, 2000) become routinepractice. Maybe if the term ‘domesticenvironment’, as opposed to housing, was used,then officers might be able to more clearly seethe impact of housing and home on children,siblings and parents. Needs assessment shouldrecognise that houses are homes where familieslive and interact together, and are not just ‘carelocations’.

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Highlighting the issue of space

Official guidance on delivering adaptations haslittle to say about space, and yet lack of it was thesingle most difficult feature of families’ lives.Space and domestic environment is now receivingoverdue attention, and even the recent housingpolicy literature (for example, Heywood, 2000 hasdiscussed its importance). Problems with spacetook many forms. The sheer size and range ofequipment that children needed createdproblems. Adaptations can often make theproblem worse by further limiting the availablespace. Kitchens and bathrooms were often toosmall. The lack of space was impeding progresswith improvements in the child’s condition: if thefloor space was limited therapies cannot beundertaken. ‘Time out’ space is of crucialimportance for non-disabled children and theirparents, but inadequate bedrooms and otherliving space made this problematic.

Embracing housing condition and location

Four out of 10 families reported problems withcold, damp and/or poor repair, and most familiesreported difficulties with the immediate locationof their homes. These findings confirm and addto the conclusions of previous research. Theyreveal the importance of addressing not only thephysical or structural limitations of a home butalso the impact of poor housing conditions andpoor environments and neighbourhoods (Murie,1993; Oldman and Beresford, 2000).

Allen et al (2002) also remind us that we shouldnot assume that more affluent families will notexperience location problems. Living on a steephill, living in an area not serviced by publictransport, or being located away from supportservices are not income-related, but may render a‘suitable house’ unsuitable. In addition, negativeattitudes to disability are endemic across societyand can be encountered anywhere.

Redrawing the boundaries of housingunsuitability

The vast majority of the sample (9 out of 10)reported problems with their homes, half reportedmore than five problems, and one in three nine ormore problems. We also know that most childrenrepresented in this survey (and as is the case for

the overall population of severely disabledchildren) had multiple impairments and hadmultiple housing needs. The ‘site’ of housingproblems or housing unsuitability extended to allparts of the internal home environment, theexternal home environment – the garden andlocal neighbourhood – and the location of thehome (with respect to support networks andservices). In our analysis we identified 11separate problem areas. Many of these are notroutinely incorporated in a housing needsassessment:

• family space;• difficulties with use of functional rooms, such

as the kitchen, bathroom, toilet;• only one toilet and/or bathroom;• lack of space for storage of equipment;• location;• access around, and in and out of, the home;• lack of downstairs toilet and bathing facilities;• poor housing condition;• lack of space to use equipment and carry out

therapies;• inadequate facilities to address carer needs in

terms of lifting and handling;• safety inside the home.

What this research has been able to do, for thefirst time, is to explore the association betweenimpairment type and area of housing difficulty.We now know that some aspects of housingunsuitability are associated with particular typesof impairment. For example, problems withsafety and location were more frequently reportedby families with a child with learning difficultiesand/or behaviour problems. At the same time,our data also showed that children with learningdifficulties and/or behaviour problems and theirfamilies (who are largely ignored within thecurrent ‘housing need’ system) can experience thesame sorts of problems with their housing aschildren with physical impairments – particularlyin terms of the need for family space. Togetherthis body of evidence calls into question currentpractice in terms of the groups of disabledchildren seen as ‘eligible’ for an assessment oftheir housing needs and assistance withaddressing such needs. In addition, the types ofproblems particularly reported by families with achild with learning and/or behaviour problemsalso highlights the need to include moving as arecognised and supported (both in terms offinance and information and advice) option forfamilies.

Conclusions

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Housing matters

Expanding the options for addressing housingneed

Allen et al (2002) use the phrase ‘housingadjustments’ to encapsulate the activities whichmay take place in response to unsuitable housing.This is an interesting and potentially valuableapproach in that it encourages a much widerconsideration of the possibilities than is affordedby concepts such as ‘adaptations’ or ‘moving’. Fordisabled children, the term ‘adaptation’ typicallybrings to mind the so-called ‘spectacularadaptations’ such as ground floor extensions. Yetthis excludes many of the changes to housing (bigand small) that families say they need. Inaddition, the term ‘adjustments’ can includechanges to address poor quality housing – afrequently reported problem among families witha disabled child. Finally, the option of movingcan be included within the notion of ‘housingadjustment’.

Recognising the tenure issue

Tenure is of enormous importance. It was quiteapparent from the interviews with both housingand social services staff that this point was notrecognised. The many needs assessment formsseen during the course of this study routinelycollected information on the tenure of the family,yet this data is not used in any operational orstrategic way. Tenure is key, not only because itindicates a lot of other information about familiessuch as income and disability (Cooke and Lawton,1985). To some extent, it also determines the sortof intervention that can be carried out. Althoughin overall terms families living in rented housingwere in greater need than owner-occupiers,nevertheless, the latter did have acute needs andoften were more hidden from official eyes.

An agenda for change

As has been already discussed, there are threekey reasons why the housing needs of disabledchildren and their families are not met: lack ofmoney, lack of awareness, and servicefragmentation. The following ‘agenda for change’is suggested to address these factors.

• The need for the issue of meeting the housingneeds of disabled children to be ‘owned’.

Social services is the most likely route throughwhich families seek assistance and it is theagency responsible for carrying out acomprehensive assessment of need. Locatingresponsibility within the disabled children’steam would seem a sensible option, especiallyif the team contained occupational therapists, apractice currently operating in a small numberof local authorities (Beresford and Oldman,2000).

• The need for housing to be included in theassessment process and mechanisms set up toact on this. We have argued that within thisassessment process the notion of housing needmust be redefined.

• Specifically, housing needs to be broadenedout and to be based on the social model ofdisability and, above all, to incorporate theimportance of space in the lives of disabledchildren and their families.

• Furthermore, the assessment for meetinghousing needs must be sensitive to differentimpairments and should include a discussion ofthe merits of adapting or moving.

• Funding levels need to be increased and theirremit widened to reflect the proposed re-definition of housing need and the range ofresponses families may wish to take to addresstheir housing needs.

• The needs of families for information andadvice about possible options or solutions toaddressing their housing needs remain largelyunaddressed outside of the DFG process. Theprovision of information and advice needs tobecome an independent ‘prong’ of servicesoffered, regardless of families’ utilisation ofother aspect of services related to addressinghousing need.

• The population’s housing needs must bemapped on a regular basis, capturing children’sdevelopment. This is necessary for informedplanning and budgeting for a range ofresources – financial, staff and housing.Access to the data collected would need to beshared with all departments involved inmeeting the housing needs of disabled childrenand their families.

• Information systems need to be establishedwhich enable authorities to record the processof service delivery and the outcomes of ahousing need ‘intervention’ and the availabilityof potentially suitable housing. There wouldneed to be a shared database(s) given therange of professionals and departmentspotentially involved in meeting housing need.

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• The fragmentation of the service delivery thatis endemic in local authorities needs to beaddressed: just one example is the way thatcommunity equipment is currently a separateservice to housing adaptation services.

• Local authorities and registered social landlordsshould work closer together in order to achievean expansion of the stock of more accessiblehousing with adequate space standards.

• Finally, solutions to the inequity betweentenures – specifically, about availability ofchoice to move or adapt – should be exploredand developed.

Conclusions

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Housing matters

References

Allen, C., Milner, J. and Price, D. (2002) Home iswhere the start is: The housing and urbanexperiences of visually impaired children,Bristol/York: The Policy Press/Joseph RowntreeFoundation.

Audit Commission (1998) Home alone: Thehousing aspects of community care, London:Audit Commission

Audit Commission (2000) Fully equipped: Theprovision of equipment to older or disabledpeople by the NHS and social services in Englandand Wales, London: Audit Commission.

Bamford, C. (2000) ‘Surveying outcomes ofequipment and adaptations’, Research Works,November, York: Social Policy Research Unit,University of York.

Beresford, B. and Oldman, C. (2000) Makinghomes fit for children: Working together topromote change in the lives of disabled children,Bristol/York: The Policy Press/Joseph RowntreeFoundation.

Beresford, B., Sloper, P., Baldwin, S. andNewman, T. (1996) What works in services forfamilies with a disabled child, Ilford: Barnardo’s.

Beresford, B., Williams, J. and Lawton, D. (2001)Community equipment: Use and needs ofdisabled children and their families, Internalworking paper no DH1841, York: Social PolicyResearch Unit, University of York.

Bull, R. (ed) (1998) Housing options for disabledpeople, London: Jessica Kingsley.

Cooke, K. and Lawton, D. (1985) ‘Housingcircumstances and standards of families withdisabled children’, Child: Care, Health andDevelopment, vol 11, pp 77-9.

DETR (Department of the Environment, Transportand the Regions) (2000) Quality and choice: Adecent home for all, London: DETR.

DETR (2001a) Supporting people: Policy intopractice, London: DTLR.

DETR (2001b) Private sector housing renewal:Reform of the Housing, Grants, Construction andRegeneration Act 1996, Local Government andHousing Act 1989 and Housing Act 1985: Aconsultation paper, London: DETR.

Dobson, B. and Middleton, S. (1998) Paying tocare: The cost of childhood disability, York: YorkPublishing Services for the Joseph RowntreeFoundation.

Goodinge, J. (1998) Removing barriers fordisabled children: Inspection of services todisabled children and their families, London:The Stationery Office.

Gordon, D. and Heslop, P. (1998) ‘Poverty anddisabled children’, in D. Dorling and L. Simpson(eds) Statistics in society, London: Arnold.

Gordon, D., Parker, R., Loughran, F. with Heslop,P. (2000a) Disabled children in Britain: A re-analysis of the OPCS disability surveys, London:The Stationery Office.

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Gordon, D., Adelman, L., Ashworth, K.,Bradshaw, J., Levitas, R., Middleton, S., Pantazis,C., Patsios, D., Payne, S., Townsend, P. andWilliams, J. (2000b) Poverty and social exclusionin Britain, York: Joseph Rowntree Foundation.

Hepworth, D. and Arksey, H. (2000) ‘Assessingcarers’ needs’, in J. Harris, L. Froggett and I.Paylor (eds) Reclaiming social work support,Birmingham: Venture Press.

Heywood, F. (1996) Managing adaptations:Positive ideas for social services, York: JosephRowntree.

Heywood, F. (2000) Money well spent: Theeffectiveness and value of housing adaptations,Bristol/York: The Policy Press/Joseph RowntreeFoundation.

Lawton, D. and Quine, L. (1990) ‘Patterns of take-up of the Family Fund, the characteristics ofeligible non-claimants and the reasons for notclaiming’, Child: care, health and development,vol 16, no 1, pp 35-53.

Mitchell, W. and Sloper, P. (2001) ‘Quality inservices for disabled children and their families:what can theory, policy and research onchildren’s and parents’ views tell us?’, Childrenand Society, vol 15, pp 237-52.

Murie, A. (1993) Housing inequality anddeprivation, London: Heinemann.

Oldman, C. (2002) Support, housing and thecountryside, London: The Countryside Agency.

Oldman, C. and Beresford, B. (1998) Homes unfitfor children: Housing, disabled children andtheir families, Bristol/York: The Policy Press/Joseph Rowntree Foundation.

Oldman, C. and Beresford, B. (2000) ‘Home, sick,home: using the experiences of disabledchildren to suggest a new theoreticalframework’, Housing Studies, vol 15, no 3, pp429-42.

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Shaw, V. (1999) A perfect match: A good practiceguide to disability housing registers, York: Hodis.

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Housing matters

A

Obtaining the sample

The sample of just under 5,000 families recruitedto the study was drawn from the Family FundTrust database. The sample covered 43 housingauthorities in England and Wales. (For thepurposes of the ‘provider’ side of the project,these comprised 33 authorities who hadparticipated in a previous project [Beresford andOldman, 2000] and supplemented by a further 10areas, each of which had similar characteristics toone or more of the roadshow areas. Since thestudy areas covered all types of councils theydiffered significantly in size.)

The overall sampling frame was provided byextracting cases from the Family Fund Trustdatabase which were recorded as being withinrelevant local authorities and where the disabledchild was aged 0 to 18. Families were includedonly if they had either received help from theFamily Fund Trust or had been turned downbecause of their economic circumstances. Thisselection criteria provided some guarantee thatthe child’s disability was severe. The samplingframe was further refined using shortenedpostcodes for those housing authorities that werenot uniquely defined by the Family Fund Trustlocal authority (social services) code – 27 out ofthe 43 areas. Some cases that appeared tooverlap housing areas were subsequentlyallocated manually to the correct area. The sizeof the resulting sampling frame was 13,000 cases.

For three of the study areas, St Albans, WelwynHatfield and Rutland, numbers in the samplingframe were small, and so all 40 families withinthese areas were positively selected. In addition,families rejected on economic grounds were alsoall positively selected for the study, because it

Appendix A:The survey of parents

was important to include as many families aspossible with higher incomes. A further 460study cases were positively selected for thisreason. The remaining 4,500 study cases wereselected at random from the sampling frame butstratified according to age, so that the final studysample had equal numbers in each of five agegroups 0 to 4, 5 to 7, 8 to 11, 12 to 15 and 16 to18.

The manual check of sample cases that appearedto overlap council boundaries was carried outafter the sampling process in order to minimisethe number of cases needing to be checked. As aresult, nine of the sample cases proved to beoutside the study areas altogether and had to bewithdrawn, and the number of families resident inOadby and Wigston Borough Council also provedto be smaller than was originally thought.

The representativeness of the sample

The Family Fund Trust database is arguably thebest national database of severely disabledchildren and their families. It represents over halfof the population of all families with a severelydisabled child in England. (Estimates of take-upsuggest that between 60 and 70% of eligiblefamilies have applied to the Trust [Lawton andQuine, 1990].) While there is bias within thedatabase toward lower-income families (a higherincome cut-off is applied with families withhousehold incomes of ~£20,000 being ineligible),this does not apply to the representativeness ofthe database in terms of conditions andimpairments which result in children beingseverely disabled.

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For this project, the disadvantage of the databaseis that it only concerns severely disabled children,as opposed to those with moderate or mildimpairments. In terms of research, these twolatter groups are very difficult to identify or accessas many are unlikely to be in contact with socialservices and/or use specialist health provision.The scope of this project did not allow for adifferent set of sampling and recruitmentprocedures to be put in place in order thatchildren with mild or moderate impairments couldbe included.

The questionnaire

The questionnaire was informed by the findingsof our previous research (Oldman and Beresford,1998; Beresford and Oldman, 2000). Certainitems in the questionnaire were drawn fromnational survey instruments (such as the Survey ofEnglish Housing and the General HouseholdSurvey).

The questionnaire included questions aboutfamily circumstances, family composition, thenature of the child’s impairments, socioeconomicand demographic characteristics; areas of housingneed and responses to dealing with unsuitablehousing.

Wherever possible a fixed response format wasused and pictures were used to increase theattractiveness of the questionnaire’s appearance.

The survey process

Two reminders were used to enhance theresponse rate. An information sheet about theproject accompanied the questionnaire.Assistance with the questionnaire (throughtelephone interview) was offered, although take-up of this was extremely low (<5).

Response rate

A total of 152 cases were withdrawn from thefinal sample size (new total = 4,839). Theprocess of contacting these 152 families with thequestionnaire yielded information that either

meant they were not eligible to take part in thesurvey (for example, their child no longer lived athome) or their child had died, or the family hadmoved and the questionnaire was undelivered. Atotal of 2,941 completed questionnaires werereturned, which represents a response rate of61%.

Characteristics of the sample

A description of the sample, particularly thenature of the child’s impairments, familycomposition and socioeconomic circumstances,can be found in Chapter 2. The following tablesprovide additional contextual information aboutthe sample.

Over 12% of the sample were from minorityethnic groups. This is a pleasing level ofresponse. The above-general populationproportions of minority ethnic groups is to beexpected.

Table A1: Marital status of respondents

n %

Married/living as married 1,988 68Single 435 15Separated/divorced 448 15Widowed 47 2Total 2,918 100

Table A2: Ethnicity of respondents

GeneralCurrent Householdsurvey Survey

n % 1998 (%)

White 2,555 87.5 93Black African 36 1.2 1Black Caribbean 37 1.3Chinese 9 0.3 –Indian 69 2.4 2Pakistani 74 2.5 2Bangladeshi 76 2.6Mixed race 8 0.3 –Other 56 1.9 (2)Total 2,920 100 100

Appendix A

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Housing matters

The type and location of families’ homes

Two (or more) storey houses were by far themost common form of accommodation among thesample (see Table A4). Only 4% of the sampledid not have ground floor access to their homes.In terms of gardens, 86% had a garden, while 4%had no access to any outside space.

Table A3: Ages of disabled children represented in thesurvey

Years n %

0-4 631 225-7 570 208-11 590 2112-15 503 1816-18 554 19Total 2,848 100

Table A4: Type of accommodation

n %

Ground floor flat/maisonette 139 5Flat/maisonette – not ground floor 103 4House 2,523 86Bungalow 143 5Other 7 1Total 2,916 100

Table A5: Location

n %

Country 120 4Village 386 14Town 1,016 36Suburbs of city 729 25Inner city 615 21Total 2,866 100

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B

It was felt that information on response to needwas best obtained via telephone interviews. Asemi-structured interview format was used, whichcovered the following areas:

• organisational processes for deliveringadaptations;

• financial details about adaptations includingparental contribution to the Disabled FacilitiesGrant (DFG);

• number of families helped and compared withthe total volume of adaptations completed;

• interviews with occupational therapistsfocusing on the assessment of housing need,delivery and after-service;

• the effectiveness of intervention: movingversus adaptation;

• joint working;• aggregate needs assessment.

The data collection process became a greater thanexpected task because of the number of differentindividuals involved, and the difficulty of trackingdown the right person to talk to. In the eventover 100 telephone contacts were made, but thebenefits of process were relatively limitedbecause answers were only available to a smallnumber of questions. Because adaptations wereinvariably delivered on a tenure basis, some timewas spent finding the relevant officers to talk to.The original aim of the study was to compare onan authority basis the degree of unmet need withthe response to that need. It proved onlypossible to do this on a broad-brush basis. Theprofessionals contacted in the course of thefieldwork are summarised in Table B.1.

Appendix B:The supply-side fieldwork

Table B1: Professionals contacted in the course offieldwork on supply issues

Job title n

Service manager: disabled children 16Housing officer with responsibility for 35adaptations in the private sector

Housing officer with responsibility for 30adaptations in the council sector

Occupational therapists 10Housing policy officers 8

housing matters: national evidence relating to disabled

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