the impact of hostel care on mentally handicapped adults

MENTAL HANDICAP VOL. 11 SEPTEMBER 1983

The impact of hostel care on mentally handicapped adults

David Locker* Bridget Rao Jean M. Weddell

The 1960’s saw the beginning of a major change in policy regarding the care of people with mental handicaps. A service dominated by the long-stay institution was to be replaced by a range of services in the community, to enable people who did not need specialised medical or nursing attention to live at home or in small-scale home-like units located in residential areas. In spite of opposition from some professionals, and occasionally the public, this policy of community care has been enthusiastically embraced by mentally handicapped people and their families, and by many of those who provide care and support; so enthusiastically, according to Hawks (1975), that it seems improper to question the assumptions on which the policy is based or to ask for evidence to support them. So many studies have documented the social and material deprivation experienced by people in institutions that anything seems better in comparison. Never- theless, there is a need to demonstrate that community care for mentally handicapped adults is effective and beneficial.

While there is evidence to show that the kinds of environment provided by hostels and other small-scale units helps to promote the social and verbal development of mentally handicapped children (Lyle, 1960; Tizard, 1964; King, Raynes, and Tizard, 1971), similar evidence regarding adults has been slow to emerge. Although studies by Campbell (1971) and Race and Race (1975,1976) suggest that hostels do stimulate social and personal skills, it is necessary to continue to evaluate this form of community care. This will help to promote the implementation of policy and ensure that people with mental handicaps are offered supportive environments which are not only pleasant and home-like but also proven to be effective in maximising their capacity for self-care.

This paper reports the results of an evaluation of a hostel for mentally handicapped adults situated in an Inner London Borough. The study aimed to test the hypothesis that the hostel would offer an environment in which mentally handicapped adults could acquire the skills necessary for more independent living. Prior to the opening of this hostel there were no facilities of its kind in the Borough. The hostel

The hostel was created from two large, semi-detached houses previously used as an old person’s home. I t provided accommodation for 18 mentally handicapped people and four staff. Three domestic staff were also employed.

15 of the places in the hostel were intended for people who would stay for a maximum of two years in order to receive the training and experience to allow them to move on to more independent living in g r o u p homes o r o t h e r s u i t a b l e accommodation. The remaining three places were reserved for people accommodated temporarily, to relieve family stress or to help cope with family emergencies such as parental illness. The residents were selected by a specially constituted committee and were expected to work in open employment or to attend the local adult training centre (ATC) as well as assisting with the organisation and running of the hostel.

Methods Random allocation of people to the

hostel was not possible, so the study took the form of a clinical trial with a case- control design. Each resident selected was matched with a control cared for in hospital and a control cared for at home. The residents and controls were matched for age, sex, degree of mental handicap as measured by intelligence quotient (IQ) and, where possible, length of institution- alisation up to the time of the study. There was no register of mentally handicapped persons living in the Borough at the time of the study, so the home controls were selected from among those attending the local ATC. The hospital controls were selected from among those living in a large mental handicap hospital, some 30 miles outside London.

Each resident and control was assessed four times over a period of one year; on entering the study, and at 3, 6, and 12 months following entry. The residents

DAVID LOCKER is Lecturer in Social Science, BRIDGET RAO is a Research Psychologist and JEAN M. WEDDELL is a Senior Lecturer in Community Medicine, all of the Department of Community Medicine, St. Thomas’ Hospital Medical School, London *DAVID LOCKER is currently Visiting Assistant Professor, Faculty of Health Services, at the University of Ottawa, Ontario

joined the study one month after coming to live in the hostel, when they had been accepted as permanent residents. At that time a detailed social history was collected and IQ measured by the Weschler Adult Intelligence Scale. This provided all the information necessary to identify the matched controls.

The instrument used in the assessments was Gunzburg’s Progress Assessment Charts of social and personal development (PAC,?. Gunzburg, 1974). These charts consist of 30 activities in each of the fields of se l f -he lp , communicat ion and socialisation, and 12 in a section on occupation. They are completed by means of observation, interviewing the subject, and drawing on the knowledge of persons who know the subjec t well . All assessments were carried out by a trained psychologist using the staff of the hostel, ATC, and hospital as informants. A score was calculated for each of the four sections, as well as a general or overall score. These scores were used to compare the progress of the residents and their controls over the study year.

The study population During the period of the study 14 people

were living in the hostel who were defined as permanent residents, that is, who were expected to stay for two years before moving on to more independent living situations. A complete set of four assessments was obtained for 12 of these. Five of this group came from home following death or illness of a parent. Three had been living in a mental handicap hospital for between 20 and 33 years - they were older than the other residents, with IQ’s below the group average. The other four came from what are best desc r ibed as in s t i t u t ions in the community: a large children’s home, a large hostel for single homeless people, and a local convent providing care for 80 mentally handicapped women.

The home controls were easily identified from people attending the ATC; only one had a history of institutional care. The hospital controls were much more difficult to find, and it proved impossible to locate matches for people below the age of 25 or with IQ’s above 60. A search of a second hospital confirmed that young, mildly mentally handicapped adults are no longer being admitted for institutional care. Con- sequently, hospital controls were found for only eight of the hostel residents. All of

100 @ 1983 British Institute of Mental Handicap


IQ 64 59 65 61 55 67 68 54 66 48 63 83

TABLE 1. Characteristics of the hostel residents and their home and hospital controls

Home controls

Name* Ape Janet 46 Susan 22 Edith 31 Brian 44 David 34 Vincent 46 Thomas 17 Julie 22 Simon 18 James 53 Manin 18 Derek 46

Name'

Mean 32.4 62.5

n 12

Jennifer SdY J- Nigel Frank Arnold Ivan Christine Darren Henry Lester Paul

~

Mean 32.4 61.5 Mean 45.7 66.5

n 12 n 8 -

Hostel

Age 45 24 29 39 40 49 17 24

Hostel residents n = 12

Home controls n = 12

Hospital controls n = 8

19 53 17 48

Assessment I I I I I I N 92 105 115 122

89 95 93 98

74 75 72 89



June Mark

66 67

I 98 58 90 116 IV 96 65 107 119

I 90 73 71 61 IV 93 73 93 68

-.

32 33 37

Self-help hczoF- Socialisation

Hostel residents n = 12 p<.002 p<.o1 p < .02

Hospital controls

Name Age Lorraine 48 Veronica 27

Occupation General

p < .02 p < .001

Stuart 44 - - -

Edgar 48

Tim 51 -



57

40 I 73

NS NS NS NS NS

NS NS NS NS p < .02

'AU names fictitious

TABLE 2. Mean general scores at assessments I to rV: all groups

these had a long history of institutionali- sation, most having been admitted in early childhood for social reasons.

The characteristics of the hostel residents and their controls are given in Table 1.

Results The progress of the hostel residents and

their home and hospital controls is summarised in Table 2. This shows the mean general score on the PAC2 at each of the four assessments. The hostel residents show progressive and steady increases in social competence from Assessment I to Assessment IV; the home controls show little change; and the hospital controls little change until a sudden increase at Assessment IV. A similar picture emerges in Table 3. This gives the mean scores of the three groups for the four sections of the PAC2 at Assessment I and Assessment IV. Again, the hostel residents show substantial increases in scores for self- help, communication, socialisation, and occupation. There is little difference in the scores of the controls living at home except for socialisation, and modest increases in the scores of the hospital controls for two out of the four sections.

Group means offer a somewhat distorted picture, masking the extent to which some individuals improve while some do not, and so statistical analysis was performed using the Wileoxon Matched Pairs Signed Ranks Test. This takes into account both the direction and magnitude of change in

individual scores. The results are shown in Table 4. For the hostel residents, differences in all scores between Assessment I and Assessment IV are statistically significant. None of the differences in the scores of the home controls is significant; and only the differences in the general scores of the hospital controls are significant.

Discussion Although the numbers involved in the

study were limited by the size of the hostel and the difficulties encountered in the matching procedure, the results do support the hypothesis that small, community based hostels provide an e n v i r o n m e n t in which menta l ly handicapped adults can acquire skills necessary for more independent living. Using the Gunzburg PAC2 as an indicator, significant improvements were made by the residents of the local authority hostel in the areas of self-help, communication, socialisation, and occupation. A group of matched controls living at home showed

TABLE 3. Group means at assessments I and N

no significant improvements; and a group of matched controls living in hospital showed improvements in their general scores only.

The statistical analysis presented above does not tell the whole story, and several points emerge on examination of the data which contribute to the findings of the study. The first is that the older residents, who generally had IQs lower than the average for the group and had lived in hospital since childhood, tended to do better than the younger residents. Two of these were the first to leave the hostel for a more independent existence, both moving to a boarding house run by people sympathetic to the needs of individuals requiring a modicum of support. This would suggest that adjustment to community living can be fairly swift, even for people with long histories of insti- tutionalisation.

The greatest improvements in social competence occurred during the early months following admission to the hostel, with a gradual decrease in the rate of change over the ensuing months. This may have been because the people rapidly reached levels of attainment close to their potential , or because a change of environment provided the stimulus for the development of skills rather than the specific character of the environment itself, so that the impact of the change declined over time. Alternatively, it may have been due to the problems experienced by the hostel during the latter part of its first year.

These problems arose largely because of the number and type of emergency admissions, which led to overcrowding and understaffing of the hostel. Many were of adolescents who were not mentally handicapped but who had social and

Continued on page 103

I I Assessment I Self-help I hczoF- I Socialisation I Occupation I Hostel residents I

n = 12

(Wdmxon Matched Pain Signed Ranks Test)

0 1983 British Institute of Mental Handicap 101


External appearance The external appearance of a building

seems to influence neighbours’ views of its occupants. Much has been written about public opposition to new facilities for mentally handicapped people, but here concerns (for instance, about house prices falling) were not so much because of the inhabitants of the building as because of the effect of the new structure on the appearance of the neighbourhood. There were comments such as:

“It’s depressing . . . People are more upset about its appearance than the people who are going to live in it.” “. . . We used to see to the top of the hill and right down . . . now when I open my eyes in the morning, I see that. I suppose I shall get used to i t . . . when you’ve had it open for (a long time) it’s a big change.”

Remarks were made about buildings with unusual features, in some cases neighbours rationalising that the mentally handicapped occupants must “need” such “special” accommodaton:

“I thought, it’s a funny house having windows like that . . . until I found out what it was and then I thought, well, probably they have to have kind of windows like that . . . I don’t know anything about handicap or their attitudes or anything and I thought, well, it’s probably a necessity, they’ve had to put them this way . . . But that’s the only thing that drew my attention to it (the building) really . . .”

Thus, some of the destigmatising potential of community-based facilities may be lost due to unusual architectural features.

from the road, might have altered the institutional impression.

Siting The sites of the 16 new units were not

purchased specifically for their purpose. All but one were previously owned by the health or local authority. Such sites are readily available, and local opposition is probably less likely than when a new site is acquired. However, these may not be the most important considerations in deciding where mentally handicapped people might live.

Use of local amenities is important fox the learning (and practising) of many skills so it makes sense to select sites which can encourage this. The accessibility of various community amenities (local shopping area including post office, pub, local shop, park or recreation area, and church) from the adult units, old and new, was summarised into an accessibility index (Report S8). Residents’ use of such amenities related tc their accessibility, with residents making less use of amenities when their units had poorer access. Surprisingly, considering the aims of the Development Project, unit2 provided under the Project had poorei accessibility than the existing, old units.

Busy roads in close proximity to the units were the most frequently noted constraint on residents’ movements. Independent journeys into the communitj are more difficult if a hazardous road musi be negotiated. Staff views of road hazards were found to be matched by the objective

TABLE 1: Existing and preferred sizes of resident groupings expressed by heads of units for mentally handicapped adults, provided as part of the Shefield Development Project.

UNIT TYPE UNIT SIZE GROUP SIZE BEDROOM SIZE Number accommodated Number sharing Number sharing

dining facilities a bedroom

Existing Preferred Existing Preferred Existing Preferred

Hospitals 1 96 not known 12 6 1, 2, 4 1 2 96 96 12 6-8 1, 2, 4 1, 2, 3 1 24 24 8 4 1, 2 1

Health 2 24 18 8 6 1, 2 authority 3 24 24 8 6 1, 2 1, 2 hostels 4 24 18 8 6 1. 2 1

5 24 18 8 6 1; 2 1 6 24 15-18 8 5-6 1, 2 1

Local 1 24 20-24 4, 6, 14 4-6 1, 2 1 ,2 authority 2 24 24 6, 18 4 1 1 hostels

The hostel which prompted the most traffic-flow figures for the roads bordering favourable comments from the neighbours each unit obtained from the Highway was one which looked like three ordinary Authority. Future planners wishing tc houses and had been built at the same time assess the relative benefits of alternative as (and in similar materials to) the sites might find it helpful to calculate surrounding estate. But, even where the accessibility indices and obtain traffic-floa component houses of a hostel look like the figures for nearby roads. surrounding “ordinary” housing, their positioning within one site can mark them References Out as different. One hostel had its three Report s2: Children’s~sjdentialacco-odation, 8-bed houses and two staff houses all

served by a single main gateway haring Report S8: Adult residential accommodation. Published by DHSS Works Group and availablc

the name of the hostel. A simple re- from Room 517, Euston Tower, 286 Eustor arrangement, giving each house access Road, LONDON NW1 3DN.

0 1983 British tnstitute of Mental Handicap

policy and user reaction. positioned within one boundary wall, Report S3: communityreaction t o f ~ ~ a l b d d h g s .

Continued frompage 101

behavioural problems. Because they refused to work or attend the ATC, some of the younger hostel residents decided to do likewise, and began to spend their days in bed or watching television. The ethos adopted by the hostel staff was to allow residents to make their own decisions, and no attempt was made to persuade them to work or to attend the ATC. There was a breakdown in the relationship between the hostel staff and the staff of the ATC; conflicts between the hostel staff emerged, and were used to detrimental effect by some of the residents; there were organised outbreaks of misbehaviour, which were difficult to control given the lack of structure in the hostel regime.

As these problems became severe, the hostel was closed. It was then reassessed by officers of the local authority and reopened with a different admissions policy, better staffing, and more support from the local mental health team. The extent to which these problems affected the progress of the residents is difficult to determine. They do indicate, however, that hostels of this type require a well-ordered system of admission, support from the sponsoring organisation, and a staff united in a philosophy of community care.

While the limited data presented here supports the case for more residential provision in the community, for in spite of its problems the hostel did have a beneficial effect, further evaluations of this form of care are necessary. There is a need to study in detail the character of hostel regimes, and the forms of organisation most appropriate for the development of social skills. There is also a need to ensure that a wide range of facilities and services is provided so that, having attained the necessary degree of competence, people with mental handicaps can move on to environments allowing for greater autonomy as and when they wish.

References Campbell, A. Aspects of personal independence of

mentally subnormal and severely subnormal adults in hospital and local authority hostels. Znt. J . Soc. Psychiat., 1971; 17:4, 21-25.

Gunzburg, H. C. The PAC Manual (3rd Edn.) London: NSMHC, 1975.

Hawks, D. Community care: an analysis of assumptions. Brit. J. Psychiar. 1975; 127, 276- 284.

King, J., Raynes, N., Tizard, J. Patterns of Residential Care. London: Routledge and Kegan Paul, 1971.

Lyle, J . G. The effect of an institution environment upon the verbal development of imbecile children. 111: The Brooklands Residential Family Unit. J. Ment. Defic. Res.

Race,D.G.,Race,D. M.Aninvestigationintothe effects of meren t carhg environments on the social Competence of mentally handicapped adults. Progress Reports No. 1 (1975) and 2 (1976). Reading: Operational Research (Health and Social Services) Unit.

Tizard, J. Community Services for the Mentally Handicapped. London: Oxford University Press, 1964.

1960; 4, 14-23.

103

the impact of hostel care on mentally handicapped adults

Documents