A regional survey of the housing circumstances of families with children experiencing intellectual and motor disabilities

DISABILITY AND REHABILITATION, 1992; VOL. 14, NO. 4, 176-182

Rehabilitation in practice

A regional survey of the housing circumstances of families with children experiencing intellectual and motor disabilities

R. A. KORPELA

Accepted for publication: January 1992

Keywords Intellectual disability, mental handicap, housing

Summary

Housing is an important aspect in promoting the home care of disabled children, but also one which is too often forpotten by professionals. The purpose of this study was to evaluate the housing conditions and the need for modifications, of 204 families with disabled children using technical aids. The housing condition of the families was good compared to average Finnish families with children. One hundred and sixty families had made no housing modifications, but 48 families had need for them, most often to bathrooms and toilets. The need increased with the severity of the children's motor and intellectual disabilities and the need to provide care in line with the number of technical aids in use. It is concluded that families with disabled children need more information on the possibilities for carrying out housing modifications, and that home visits by a case manager are important to evaluate environmental factors affecting the care.

1. Introduction

The current trend in the care of disabled children is to give them the opportunity to live at home and share the everyday family life and community experiences which those without disability take for granted. It is a challenge to society to provide services which make home care possible. Housing is one important aspect in promoting home care, but also one which is too often forgot- ten by professionals.' - 4

Disabled people are not a homogeneous group, and their needs and capabilities vary extensively. Life is a con- tinuum of change - children grow up and life-skills and life-needs are continuously hanging.^-^ There is an abundance of guidelines and design criteria in the form of building codes and standards for accessible en- vironments which do not forget disabled people. lo- l2

Correspondence to: Raija A. Korpela, Department of Pediatric Neurology, Tampere University Hospital, Box 2000, SF-33521 Tampere, Finland.

Despite this, the physical workids still too often designed with the young active adult male in mind.13-17 Disabled people may be the first to suffer from the consequences of an inaccessible environment, but they are not the only ones.

A disability emerges when the relation between in- dividuals and their surroundings does not function, and from this point of view disability is more a result of environmental design than of individual disabilities as such.Io- l 2 An integrated approach to accessibility sup- ports the creation of supportive environment. Individual difficulties can be reduced by specific aids and individual adaptations of ordinary houses through special allowances.16.1s This stresses the importance of the housing of families who care for disabled children.

One-quarter of the parents in McAndrew's study reported that their current accommodation was not en- tirely suitable, and almost one-quarter had made altera- tions to improve the care or movement of their ~ h i 1 d . I ~ Stairs and unsatisfactory bathroom or toilet facilities were the main problems.

In a Swedish survey in 1976, the standard of housing of families with disabled children - in the form of houses, number of rooms and modern conveniences - was higher than that of the average family with children, and also higher than that of a similar 1966 survey.20-22 Twenty per cent of families had modified their flats and private homes, but 47% still needed further modification. In another Swedish survey 10 of 16 families caring for their severely disabled child or adolescent at home had adapted their accommodation to met their special needs, and six families expressed the need to have their accommodation modified.23 In a British survey families with disabled children were found to have lower housing standards than the control families: they were less likely to be owner-occupiers, more likely t o live in overcrowded conditions and less likely to have central heating in their household.24 In a Finnish survey families with children with intellectual disabilities lived in smaller residences than other families, but there was no difference in

0963 - 8288/92 $3.00 0 1992 Taylor & Francis Ltd.

Dis

abil

Reh

abil

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Uni

vers

ity o

f A

lber

ta o

n 11

/26/

14Fo

r pe

rson

al u

se o

nly.

Housing circumstances of families with disabled children

conveniences such as toilet and bathing facilities.25 Parents of disabled children have often been found to

need more information on available services concerning housing.12~19~24*26~27 It has been noted that the role of the physician is to supervise the team of health professionals and to coordinate the care and support required for home are.^^^^

The purpose of this present survey was to evaluate housing conditions and the need for modifications of families with disabled children using various technical aids.

2. Material and methods Tampere University Hospital serves a region of about 400 OOO inhabitants, 80 OOO of whom are under 16 years of age. The vast majority of neurologically disabled children living in this region are under the care of the Department of Paediatric Neurology and the Pirkanmaa Regional Centre for the Mentally Retarded. All disabled children who lived at home and had technical aids pro- vided by either of these organizations were included in the study.

The sample consisted of 209 children, but five families did not complete the questionnaire. The five children not included in the study did not differ from the others; they all had cerebral palsy and at least moderate motor disability. The study group thus included 204 children, (92 boys and 112 girls), aged 0.8 - 16.8 years, the mean age being 7.7 years. The care of 13 1 (64%) children was under the Department of Paediatric Neurology and the other 73 were followed by the outpatient clinic of the Pirkanmaa Regional Centre for the Mentally Retarded.

The diagnoses of the children included cerebral palsy (n = 123), cerebral malformation (n = 19), myelomeningocele (n = 12), syndrome or chromosomal anomaly (n = 27), neuromuscular disease (n = 7), metabolic disease (n = 5 ) and other diagnoses (n = 11). Only three of the 204 children had no motor disability, 79 (39%) had mild motor difficulties, but were ambulatory, 23 (1 1070) were ambulatory with technical aids, 59 (29%) were not ambulatory, but had their own body support and 40 children (20%) had very severe motor disability and needed total body support. Of the children 72 (35%) had normal intellectual capacity, 21 (10%) were mildly, 36 (18%) moderately and 75 (37%) severely mentally retarded.

The parents of 87 children were interviewed using a structured questionnaire by the author, and 117 families completed the same questionnaire with the help of the child's therapist. The parents were questioned about the use and role of technical aids, about the care load, housing conditions and any need for modifications to their

accommodation. Most of the questionnaires were com- pletely answered and included useful and interesting com- ments. The data were completed by telephone surveys and information from the children's files.

The children needed much help in daily activities: 45 (22%) needed help daily for 1 h or less; 24 (12%) for 1 - 2 h; 22 (11%) for 3-4 h; 34 (17%) for 5 - 6 h; 35 (17%) for 7 - 10 h; and 44 (22%) for more than 11 h.

These 204 children had in personal use altogether 1278 various technical aids. The classification is presented ac- cording to the Nordic Classification System on Aids for Disabled Persons.29 The largest group (339, 27%) consisted of aids for personal mobility. The children had in use 298 (23%) orthoses and prostheses, 240 (19%) aids for therapy and training, 188 (15%) special seatings, 152 (12%) aids for personal hygiene, 27 (2%) aids for communication, information and signalling, 13 aids for handling other products, 12 (0.9%) household aids and nine aids for play and recreation. Thirty-one children had in use only one technical aid, 79 children had two to five various aids, 54 children six to 10 aids, 23 children 11 - 15 aids and 17 children had in use 16 - 25 various technical aids.

The statistical analyses were carried out by using the chi-square test.

3. Results The samples were distributed in line with other families in the Pirkanmaa region: 80 (39%) families in the study as compared to 41% of families with children lived in the city of Tampere; and 55 (27%) families in the study as compared to 25% of families with children lived in small towns.30 Sixty-nine (34%) families in the study lived in sparsely populated areas, which was the same proportion as other families.

Table 1 shows the kinds of living accommodation occupied by the sample, which is not dissimilar to the na- tional p i ~ t u r e . ~ ' Of the families in the study 196 (96%) lived in well-equipped dwellings with piped-water installa- tion, sewer, hot water, flush toilet, bathing facilities and central heating; and eight families (4Vo) lived in dwellings with a substandard level of equipment. From that point of view housing conditions were a little better than those of average families with children in Finland.31

The average size of families in the study was 4 - 0 persons, which was more than the size of average Finnish families (3.1 in towns and 3.4 in other municipali t ie~).~~ Thirty-five families of the study (17%) lived in overcrowded conditions (more than one person per room, with the kitchen included in the number of rooms) (Table 1). Twenty-three of these families (66%) lived in a rented dwelling. Ten families lived in a block of flats, eight in

177

Dis

abil

Reh

abil

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Uni

vers

ity o

f A

lber

ta o

n 11

/26/

14Fo

r pe

rson

al u

se o

nly.

R . A. Korpela

Table 1 pared with average Finnish families with children under 17 years

Average Families of families

(%) Finland

Housing conditions of families with disabled children com-

the study with children in

Living in detached houses 50.5 54.3 Living in attached houses 21.6 14.8 Living in blocks of flats 27.9 30.8 Living in owner-occupied dwellings 71 - 6 76.3 Floor area per person (mZ) 24.0 23-8 Persons per 100 rooms 89.2 88.5 Living in well-equipped dwellings 95.6 88.7 Living in overcrowded conditions 17.2 17.3

~

a Official Statistics of Finland: Housing Conditions, Popular Census 1985.

an attached house and 17 in a detached house. Families with young disabled children lived most often

in overcrowded conditions3' (x2 = 141 - 18, d.f. 4, p<O.Ol), a trend which was the same as with average Finnish families with children (Table 2). Five of the 35

Table 2 Families living in overcrowded conditions compared to the age of their disabled child

Housing condition

Overcrowing Satisfactory Total Ages (years) ( n = 35) (n = 169) (n = 204)

0 -2 .9 11 26 31 3 - 5 . 9 1 1 41 52 6-8.9 5 28 33 9 - 12.9 6 46 52 13 - 16.8 2 28 30

children living in overcrowded dwellings had in use only one technical aid, 14 had two to five technical aids, nine children had six to 10 aids, five children 11 - 15 and two children 16 - 25 aids.

Thirty-one of the 57 families (54%) living in blocks of flats had no lift in use. In 1985, 60% of average Finnish apartments had Seventeen families with a non- ambulatory child lived in houses without lifts, and had problems in the use of aids for mobility; but lifts did not solve all problems in mobility. The use of 11 lifts (42%) was difficult: the door openings were too narrow, for ex- ample, or there were steps in front of them.

One hundred and sixty families (78%) had made no home modifications, but 48 of them (30%) had an ob- vious need for them. Nineteen of these families lived in overcrowded dwellings. The toilets and bathrooms most often needed modifications. The need for modifications

178

increased with the severity of children's motor (x2=21.832, d.f. 4, p c 0 - 0 1 ) (Table 3) and intellectual disability (x2=17.6, d.f. 4, p<O.Ol) (Table 4), children's need of care (x2=19.59, d.f. 5 , p<O-Ol) (Table 5) , the number of technical aids in use (x2 = 15 * 52,

Table 3 Housing modifications compared to the motor disability of the children

Housing Housing modifications modifications

have not been made have been

No need Need for made for modi- modifi- fications cations Total

Motor disability ( n = 112) (n = 48) (n = 44) (n = 204)

No 3 3 Mild difficulties 59 8 12 79 Ambulatory with aids 8 6 9 23 Not ambulatory, own body support 27 18 14 59 Not ambulatory, not own body support 15 16 9 40

Table 4 ty of the children

Housing modifications compared to the intellectual disabili-

Housing modifications Housing have not been made modifica-

tions No need Need for have been

for modi- modifi- made Intellectual fications cations Total disability (n = 1 12) (n = 48) ( n = 44) ( n = 204)

No 45 9 18 72 Mild 15 1 5 21 Moderate 21 10 5 36 Severe 21 18 9 48 Very severe 10 10 7 27

Table 5 Housing modifications compared to the children's daily need of care


tions Nq need Need for have been for modi- modifi- made

Daily need fications cations Total of care (n=112) (n=48) (n = 44) ( n = 204)

Less than % h 32 2 1 1 45 1-2 h 19 3 2 24 3 - 4 h 9 6 7 22 5 -6 h 15 10 9 34 7 - 1 0 h 15 14 6 35 More than 11 h 22 13 9 44

Dis

abil

Reh

abil

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Uni

vers

ity o

f A

lber

ta o

n 11

/26/

14Fo

r pe

rson

al u

se o

nly.


Table 6 Housing modifications compared to the number use of technical aids in use



for modi- modifi- made Number of technical fications cations Total aids in use (n = I 12) (n = 48) (n = 44) (n = 204)

1 2 - 5 6 - 10 I 1 - 15 16-25

27 3 1 31 50 15 14 79 19 16 19 54 9 9 5 23 7 5 5 17

d.f. 4, p<0.01) (Table 6) and the need of technical aids for toileting (x2=9-164, d.f. 1, p<0.01) and bathing (x2=4.62, d.f. 1, p < 0 . 0 5 ) (Table 7). There was no significant relationship with age of children (x2 = 5 -651, d.f. 4, p>0-05) (Table 8), social class of the family (x2=7.196, d.f. 5 ) , the size (x2=9*275, d.f. 9), and ownership of dwelling (x2= 5.34, d.f. 3) or the type of building in which the dwelling was located (x2 = 3.699, d.f. 3).

Table 7 for toileting and bathing

Housing modifications compared to the use of technical aids

Housing modifications Housing have not been made rnodifica-


for modi- modifi- made fications cations Total (n= 112) (n=48) (n=44) (n=204)

Aids for toileting In use 16 17 15 48 Not in use 96 31 29 156

Aids for barhing In use 20 16 18 54 Not in use 92 32 26 150

Table 8 Housing modifications compared to the children’s age


tions No need Need for have been for modi- modifi- made fications cations Total

Ages (years) (n = 1 12) (n = 48) (n = 44) (n = 204)

0-2.9 23 12 2 37 3 - 5.9 30 14 8 52 6-8.9 14 11 8 33 9- 12.9 27 6 19 52 13- 16’8 18 5 7 30

Forty-four families (22%) had made home modifications. In 30 cases (68%) they had rebuilt the toilets and bathrooms, and the rest were mostly the removal of doorsteps and widening of doors. The need for modifications had increased with the number of aids in use (x2= 13.394, d.f. 4, p<0.01) (Table 6), the need of aids for toileting (x2=3.478, d.f. 1, p<0.05) and bathing (x2=6.009, d.f. 1, p < 0 - 0 1 ) (Table 7) and with children’s age (x2= 13.973, d.f. 4, p<O*Ol) (Table 8).

Thirty families (15%) had paid attention to the special needs of their child during the planning and building of their home, which at the time of the study was signifi-

Table 9 Families who had paid attention t o special needs of children during planning of their home compared t o the number of technical aids in use

Attention paid to needs

Number of technical Yes No Total aids in use (n = 30) (n = 174) (n = 204)

1 2 29 31 2 - 5 6 73 79 6 - 10 12 42 54 11-15 7 16 23 16-25 3 14 17

cantly related to the increasing number of technical aids in use (x2= 11.954, d.f. 4, p<0-05) (Table 9) but not with the severity of the children’s motor disability (x2=3*101, d.f. 4) or intellectual disability (x2= 1.946, d.f. 4), or age (x2=4-943, d.f. 4) and social class of the family (x2=5.383, d.f. 5 ) .

Six families had planned special adaptations to an attached house and 24 to a detached house. Most often there were broad door openings without doorsteps, and large toilets and bathrooms. However, they could solve only some of changing needs of their child’s care, because eight families (27%) had made more adjustments to their home, and seven families felt there was a need for extra modifications, all concerning toilets and bathrooms.

Fifty-one families (25%) had changed their form of accommodation because of the difficulties in the care of their disabled child. Eighteen of these families (35%) had built a detached house with special adaptations. The need for changing had increased with the children’s need for care (x2= 13.651, d.f. 5, p<0.05) (Table lo), the severity of the motor disability (x2=22-368, d.f. 4, p<O.Ol) (Table 11) and number of technical aids in use (x2=24.413, d.f. 4, p<O.Ol) but had no significant cor- relation with the social status of the family (x2 = 3.289, d.f. 5 ) or the type of building (x2=3.02, d.f. 3).

Fifty-seven families (28%) were actively planning to

179

Dis

abil

Reh

abil

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Uni

vers

ity o

f A

lber

ta o

n 11

/26/

14Fo

r pe

rson

al u

se o

nly.

R. A. Korpela

Table 10 Families who have changed their form of accommodation compared to their child’s need of care

Change of accommodation

Daily need Yes No Total of care (n=51) (n= 153) (n = 204)

Less than Yz h 3 42 45 1 - 2 h 6 18 24 3 - 4 h 8 14 22 5 - 6 h 13 21 34 7 - 1 0 h I 1 24 35 More than 1 1 h 10 34 44

Table 11 Families who have changed their form of accommodation compared to their child’s motor disability and number of technical aids in use

Change of accommodation

Yes No Total (n=51) ( n = 153) (n=204)

Motor disability No 3 3 Mild difficulties 7 1 2 19 Ambulatory with aids 7 16 23 Not ambulatory, own

Not ambulatory, not own body support 12 28 40

body support 25 34 59

Number of technical aids in use 1 4 27 31 2 - 5 9 70 19 6- 10 20 34 54 11 - 15 I 2 1 1 23 I6 - 25 6 I 1 17

change their accommodation, especially when their child was not ambulatory (x2= 17.046, d.f. 4, p<O-Ol) (Table 12), they lived in blocks of flats (x2= 16.843, d.f. 3, pc0 .01 ) (Table 13) and their home needed modifications (x2=5*873, d.f. 1, pCO.05).

Seventy-seven of all families in the study (38%) had obtained information on special allowances for housing modifications. Twenty-two of 48 families (46%) needing housing modifications, 23 of 30 families (77%) who were paying attention to the special needs of their disabled child during the planning of their home; 15 of 57 families (26%) who planned to change their flat or private home and seven of 35 families (20%) living in overcrowded dwellings had obtained sufficient information on the possibilities and special allowances for housing modifications. The case manager, who specialized in housing modifications, had visited 39 of 204 families (19Vo), especially if the child had a severe motor disability. The

180

Table 12 Families who planned to change their form of accommodation compared to their child’s motor disability

Planning of change

Yes No Total Motor disability (n = 57) (n = 147) (n = 204)

No 3 3 Mild motor difficulties 11 68 79 Ambulatory with aids 11 12 23 Not ambulatory, own body support 23 36 59 Not ambulatory, not own body support 12 28 40

Table 13 Families who have planned to change their form of accommodation because of their child’s needs compared to the type of building and the need of housing modifications

Planning of change

Yes No Total ( n = 57) (n = 147) (n = 204)

Type of building Detached house Terraced house Block of flats

16 87 103 16 28 44 25 32 57

Housing modifications Needed 20 28 48 Not needed 37 119 I56

home visit was made before housing modifications to 17 of 44 families, but only to 18 of 68 families who needed housing modification. The home visit was made to 16 of 51 families (31%) who had changed, and to 12 of 57 families (21 To) who planned to change their flat or private home, but only to three of 35 families (9Vo) living in overcrowded dwellings.

4. Discussion Normalization and integration are nowadays important issues in paediatric rehabilitation. To a great extent the quality of home care of disabled children depends on the help offered to the far nil^;^^^^^^ but in many cases ser- vice has remained fragmented and poorly coordinated. Inadequate communication among professionals, lack of organized services, varying requirements for services and financial aid, and insufficient or inappropriate fiscal resources all contribute to this problem. It should be quite easy to organize services for children with mild disabilities, but the care of severely disabled children at home requires special efforts.4~23~33~34

Disabled people may be the first to suffer from the consequences of an inaccessible environment. Individual aids

Dis

abil

Reh

abil

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Uni

vers

ity o

f A

lber

ta o

n 11

/26/

14Fo

r pe

rson

al u

se o

nly.


enable people with physical impairments to function in society. However, for their optimum functioning it is important that the design of the built environment is adapted, and the necessary facilities should be incor- porated from the beginning.

This survey has been made in an area where, for many years, attention has been paid to the organization of children’s rehabilitation services. The children tan have all the technical aids without cost to the family and special allowances for housing modifications needed for their care.

The housing condition of families with disabled children was similar to that of average Finnish families with children. There was no concentration of families with disabled children in cities. Families in the sample favoured detached houses, which may be more practical for them than apartments, which too often have problems in the use of lifts. Stairlifts could solve some of these problems. 35

The extent of housing modifications in our survey was similiar to that in earlier studies. 19922923 Although the housing standard was found to be quite good, toilets and bathrooms had been in particular need of modifications. Easy use of toilets and bathrooms depends on the physical abilities of the user and the need for technical aids and assistance in personal hygiene.36- 38 Ambulatory disabled children often require facilities for support. Wheelchair users require space to be able to transfer onto a toilet seat independently using the support of handrails, or else they need to be helped. The usefulness of toilets and bathrooms was important for families with severely disabled children because of facilitating care and the use of technical aids. Mobility problems were not so important, partly because of a wider range of available options.

Many families had paid attention to possible solutions during the planning and building of their home, but our results showed that families did not know enough about the changing needs of their growing children. The lack of information on the possibilities for carrying out housing modifications was quite similar to that of the English study, but higher than in the Swedish study.2122 Families with disabled children therefore need more information on recommendations and standards of housing. The lift- ing of growing children will be difficult and, in future, the use of various hoists will need additional solutions, such as the use of high technology for environmental control .39,40

It can be concluded that, in future, more attention must be paid to the housing condition of families with disabled children. Information on housing modifications should be part of the basic information on rehabilitation services. Often simple solutions - for instance changing the open-

ing direction of bathroom doors, fixing rails, removing doorsteps, building ramps, safety systems for electric equipment, etc - can help home care. Evaluation of the housing condition and environmental factors affecting the use of technical aids should be repeated regularly by follow-up visits made by a case manager.

In future, perhaps only very severely disabled children with medical complications cannot be integrated into ~ o c i e t y . ~ . ~ ~ This means many kinds of needs for the rehabilitation services, and at the same time a rationing of services may be i n e ~ i t a b l e . ~ ~ -43 The issues related to how to allocate medical and rehabilitation services raise many questions regarding public policy and ethics. The physician’s role is to coordinate the rehabilitation of disabled children and to inform society of their special needs, including political decisions, which may affect them.

Acknowledgements This work was supported with grants from the Rinnekoti Foundation and the Arvo and Lea Yippo Foundation.

References

1

2

3

4

5

6

7

8

9

10 I 1

12

13

Cluff P. Implications of the environment for persons with disabilities. Proceedings of the 2nd Internarional Conference on Rehabilitation Engineering, Ottawa, Canada 1984; 279 - 281. Ayer S. Community care: failure of professionals to meet family needs. Child: Care, Health and Development, 1984; 10: 127 - 140. Brewer EJ , McPerson M, Magrab PR, Hutchins VL. Family- centered, community-based, coordinated care for children with special health care needs. Pediatrics, 1989; 83: 1055 - 1060. Cohen HJ , Biehl R, Crain LS, Haber J , Healy A, Katcher A, Op- penheimer SG, Perrin J . Committee on Children With Disabilities: Transition of severely disabled children from hospital or chronic care facilities to the community. Pediatrics 1986; 78: 531 - 534. Allison BJ. Current uses of mobility aids. Clinical Orthopaedics and Related Research, 1980; 148: 62 - 69. Butler C, Okamoto GA, McKay TM. Motorized wheelchair driv- ing by disabled children. Archives of Physical Medicine and Rehabilitation, 1984; 65: 95 - 97. Walker DK, Palfrey JS, Butler JA, Singer J . Use and payment of health and community services for children with impaired mobility. Public Health Reports, 1988; 103: 411 -415. Bax MCO, Smyth DPL, Thomas AP. Health care of physically disabled adults. British Medical Journal, 1988; 296: 1153 - 1155. Borjeson M-C, Lagergren J . Life conditions of adolescents with myelomeningocele. Developmental Medicine and Child Neurology,

Goldsmith S. Designing for Disabled. Rugby: Jolly & Barber, 1976. Central Committee for the Promotion of Accessibility. European Manual for an Accessible Built Environment. Utrecht: PMC- Waddinxveen-Holland, 1990. United Nations. Designing with Care: A Guide to Adaptation of the Built Environment for Disabled Persons. Nairobi, 1983. Chamberlain MA, Buchanan JM, Hanks H . The arthritic in an ur- ban environment. Annals of the Rheumatic Diseases, 1979; 38:

1990; 32: 698-706.

51 -56.

181

Dis

abil

Reh

abil

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Uni

vers

ity o

f A

lber

ta o

n 11

/26/

14Fo

r pe

rson

al u

se o

nly.

R. A. Korpela

14 Chamberlain MA, Thornley G, Stowe J, Wright V. Evaluation of aid and equipment for bath. 11. A possible solution to the problem. Rheumatology and Rehabilitation, 1981; 20: 38 - 43.

15 Newrick PG, Langton-Hewer R. Motor neurone disease: can we do better? British Medical Journal, 1984; 289: 539 - 542.

16 Gloag D. Needs and opportunities in rehabilitation. British Medical Journal, 1985; 290: 220 - 223.

17 Carling PJ. Access to housing: cornerstone of the American dream. Journal of Rehabilitation, 1989; 55: 6 - 8 .

18 Lezberg SF. Adaptive housing: a boon for the disabled. Journal of Public Health Policy, 1987; 8: 351 - 358.

19 McAndrew I . Children with a disability and their families. Child: Care, Health and Development, 1976; 2: 213 - 237.

20 Lagergren J . Rorelsehindrade barn. Socialmedicinsk Tidskriyt, 1968;

21 Lagergren J. Motor disabled children: a study from a Swedish county. Developmental Medicine and Child Neurology, 1970; 12:

22 Lagergren J. Children with motor handicaps: epidemiological, medical and socio-paediatric aspects of motor disabled children in a Swedish county. Acta Paediatrica Scandinavica, 1981 ; Suppl. 289:

23 Edebol-Tysk K. Spastic tetraplegic palsy. Epidemiology and care load. Dissertation, University of Gothenburg. Gothenburg: Graphic Systems AB, 1989.

24 Cooke K, Lawton D. Housing circumstances and standards of families with disabled children. Child: Care, Health and Develop- ment, 1985; 11: 71 -79.

25 Martikainen A. Costs of care for mentally retarded children. In: Ktiiiriiiinen R, Piepponen P, Vaskilampi T (eds) A Multi-disciplinary Case - Control Study of Mental Retardation in Children of Fourth Birth Cohorts. Kuopio: University of Kuopio Press, 1985; 117 - 124.

26 Robinson J. Care in the community: support for informal carers of chronically ill and disabled people. International Disability Studies, 1987; 9: 78 - 80.

27 Bailey DB, Simeonson RJ. Assessing needs of families with disabled infants. Journal of Special Education, 1988; 22: 117 - 127.

28 Cadman D, Goldsmith C, Bashim P. Values, preferences and decisions in the care of children with developmental disabilities.

6: 322-331.

56-63.

1-60.

Developmental and Behavioral Pediatrics, 1984; 5 : 60 - 64. 29 The Nordic Committee on Disability. Nordic classification system

on aids for disabled persons. Bromma: Nordic Committee on Disability, 1986.

30 Central Statistical Office of Finland. Population Census, 1985, Volume V: Municipal Data. Helsinki, Painokaari Oy, 1988.

3 I Central Statistical Office of Finland. Populafion Census, 1985, Volume Ill: Housing Condition. Helsinki: Painokaari Oy, 1988.

32 Central Statistical Office of Finland. Population Census, 1985, Volume I t : Household-dwelling Units and Families. Helsinki: Painokaari Oy, 1988.

33 Dupont A. A study concerning the time-related and other burdens when severely disabled children are reared at home. Acta Psychiatrica Scandinavica, 1980; 63 (Suppl. 285); 249 - 257.

34 Hagberg B, Edebol-Tysk K, Edstrom B. The basic care needs of profoundly mentally retarded children with multihandicaps. Developmental Medicine and Child Neurology, 1988; 30: 287 - 293.

35 Stowe J . Everyday aids and appliances. Stairlifts. British Medical Journal, 1990; 301: 865 - 867.

36 Chamberlain MA, Thornley G, Wright V. Evaluation of aids and equipment for bath and toilet. Rheumatology Rehabilitation, 1978;

37 George J , Kerr AAJ. Everyday aids and appliances. Equipment for bathing. British Medical Journal, 1988; 2%: 982- 983.

38 Penn ND. Everyday aids and applicances. Toilet seats. British Medical Journal, 1988; 296: 918-919.

39 Waters K. Everyday aids and appliances. Hoists. British Medical Journal, 1988; 2%: 1114-1117.

40 Symington DC, Lywood DW, Lawson JS, MacLean J. Environ- mental control systems in chronic care hospital and nursing homes. Archives of Physical Medicine and Rehabilitation, 1986; 67:

41 Melvin JL. Rehabilitation in the year 2000. American Journal of Physical Medicine and Rehabilitation, 1988; 67: 197 - 201.

42 Banta HD, Thanker SB. The case for reasssessment of health care technology. Once is not enough. Journal ofthe American Medical Association, 1990; 264: 235 - 240.

43 Matthews DJ, Meier RH, Bartholome W. Ethical issues encountered in pediatric rehabilitation. Pediatrician 1990; 17: 108 - 114.

17: 187- 192.

322 - 325.

182

Dis

abil

Reh

abil

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Uni

vers

ity o

f A

lber

ta o

n 11

/26/

14Fo

r pe

rson

al u

se o

nly.

Documents

A regional survey of the housing circumstances of families with children experiencing intellectual and motor disabilities