deinstitutionalisation of persons with intellectual disabilities: a review of australian studies

Journal of lntellectual & Developmental Disability, Vol. 23, No. 2, pp. 155-170, 1998

Deinstitutionalisation of persons with intellectual disabilities: A review of Australian

studies I

LouIsE YOUNG

JEFF SIGAFOOS

JANENE SUTTIE

ADMAN ASHMAN

The University of Queensland

PAUL GREVELL

Queensland Department of Families, Youth, and Community Care

This paper provides a quantitative review of Australian studies on deinstitutionalisation and community living for persons with intellectual disabilities. Thir- teen studies from eight separate projects were identified from a comprehensive literature search. Studies were included if they were conducted in Australia and focused on the effects of relocating per sons from institutions to community-based residences, involved a comparison of institutional versus community-based services, or investigated the community adjustment of people who had once lived in an institution. Each study was examined to ascertain details on the settings, participants, methodology, and results. Community-based placements were associated with increased adaptive behaviour, greater community participation, and improved contact with family and friends. There was little or no change in problem behaviour, health, or mortality The results are consistent with similar reviews from studies conducted in the USA and UK and support the development of community-based services for persons with intellectual disability. However, limitations in the Australian database are acknowledged and discussed.

1Address correspondence to Jeff Sigafoos, Schonell Research Centre, The University of Queensland, Qld 4072, Australia. Email: [email protected]

1326-978X/98/020155-t6 © 1998 Australian Society for the Study of Intellectual Disability Inc.

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156 Young, Sigafoos, Suttie, Ashman, & Grevell

There has been considerable effort in many Western countries to relocate persons with intellectual disabilities from large congregate institutions to smaller community-based services. Over the past three decades in the USA, fbr example, there has been a significant reduction in the number of people living in institutions for people with intellectual disability and corresponding growth in community-based living arrangements (Lakin, Braddock, & Smith, 1995, 1996; Larson & Lakin, 1989; Prouty, Lakin, & Smith, 1996). Similar trends have been observed in the UK and many other European countries (Emerson & Hatton, 1996; Emerson et al., 1996; Hatton, Emerson, & Kieman, 1995; Pedlar, 1990). While some of these changes may reflect policies limiting new admissions and mortality among long-term institutionalised residents, deinstitutionalisation or the systematic movement of persons with intellectual disability from large congregate care institutions to smaller community-based living arrangements has no doubt contributed substantially to these trends.

One rationale for deinstitutionalisation is that it may both lead to increases in the relocated residents' adaptive behaviours and possibly decrease the likelihood of abuse and neglect (Blatt & Kaplan, 1966; Conway, Bergin, & Thornton, 1996; Homer, 1980; Sobsey, 1994; Thompson & Grabowski, 1972). In addition, the provision of residential services in smaller community-based homes is consistent with the principles of nonnalisation and social role valorisation (SRV). These two principles provide the underlying philosophical framework for many contemporary services in the field (Cocks, 1987). In this context, normalisation refers to providing a lifestyle which is as close as possible to the regular conditions of everyday living (Nirje, 1985). SRV could be viewed as an extension and refinement of normalisation. In discussing SRV, Wolfensberger (1983, 1992, 1996) argued that a primary goal of human services should be the development of valued social roles. Compared to an institutional environment, a home in the community would seem more consistent with the principles of normalisation and SRV. Services which endeavour to apply normalisation and SRV may also be better able to support people with intellectual disabilities in the community (Cocks, 1996).

Governments may have adopted policies leading to deinstitutionalisation and the development of community-based residential options for numerous reasons. Negative publicity concerning the conditions within institutions, legislation requiting the provision of habilitation rather than mere custodial care, and changes in the prevailing philoso- phies underlying human services have facilitated the relocation of persons with intellectual disabilities from institutional to community-based services. However, in the current climate of economic restraint, government support for policies such as deinstitutionalisation and community living may depend on demonstrating positive outcomes.

Major reviews of deinstitutionalisation projects in the USA and UK have found several consistent trends (e.g., Emerson & Hatton, 1996; Larson & Lakin, 1989). Generally, when people with intellectual disabilities are moved from institutions into smaller community-based services, there is an associated improvement in their quality and standard of life. More specifically, individuals show increased adaptive behaviour and autonomy in areas such as self-care, domestic, community, leisure skills and choice-making. In addition, the amount and quality of interaction with staff, family, and friends increases once the person is residing in a community-based home. Problem behaviours such as aggression, self-injury, and property destruction have also been

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Deinstitutionalisation 157

observed to decrease in some, but not all, studies when the individual is moved from an institution to a community-based living arrangement.

However, while such positive outcomes are generally found, they are by no means inevitable following a move to the community. This suggests that mere placement in the community is not always sufficient. Individual characteristics of clients and staff and the nature of the services received in the community, for example, may be significant. Some of these factors may be unique to the national, state, or local context, so there is need for caution in using the experiences of other countries as a basis for framing Australian policies and services.

In Australia, the deinstitutionalisation of persons with intellectual disabilities and the development of community-based residential services appears to have begun later and progressed more slowly than in either the USA or UK (Molony & Taplin, 1988). Nonetheless, over the past 15 years, several studies on deinstitutionalisation have been reported. However, no major integrative and quantitative reviews of this literature have been published. Given that several Australian states are currently embarked on programs of institutional reform, a comprehensive review of Australian studies on this topic seems timely.

The purpose of the present study is to review the existing database relevant to the relocation of persons from institutions to community-based residences in Australia. A review of this kind may provide useful information for informing policies related to deinstitutionalisation and the development of effective community-based services for persons with intellectual disability.

M E T H O D

Literature searches involving several methods were used to identify relevant studies. Initially, computerised searches using the terms Deinstitutionalisation and Australia were conducted of the ERIC (1982-9/96), PsycLit (1/74-12/96), and Social Sciences Index (2/83-9/96) databases. Systematic manual searches from 1980-1996 were also made of several relevant journals (e.g., Australia and New Zealand Journal of Developmental Disability, Australian Disability Review). Citations in studies al- ready identified through the computerised and manual searches were also reviewed.

Studies identified through the computer and manual searches were screened to determine their relevance to the present review. The research had to have been conducted in Australia and involved persons with intellectual disabilities. In addition, studies were retained only if they focused on the effects of relocating persons from institutions to community-based residences, involved a comparison of institutional versus community-based services, or investigated the community adjustment of people who had once lived in an institution. This screening process resulted in the identifica- tion of 13 studies from eight projects. While it is acknowledged that there are reports of Australian deinstitutionalisation projects which have not appeared in refereed journals, only studies which had been published in peer reviewed journals were retained to reflect the existing archival database. The requirement of peer review provided an external measure of quality.

These studies were examined to ascertain details of the settings, participants,

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methodology, and results. A description of the setting included the State in which the study was conducted and the type and size of the residential environment(s) in which the participants lived or were relocated to and from (e.g., institution, community-based group home). Environments were classified as either institution or community. Institu- tions were defined as any residence that was described in the study as a hospital, institution, nursing home, hostel, or ward. These tended to be congregate care settings with populations ranging from 30 to 200 individuals. Community residences included any living arrangement that was based in the community rather than on the grounds of an institution, and included facilities described as group homes, shared accommodation, or independent living arrangements. Community-based residences generally accom- modated no more than six clients and were located in suburban neighbourhoods.

Participants were classified in terms of age, sex, and degree of intellectual disability. Methodological details extracted from these studies included whether data were collected by direct observation or indirectly via interviews, questionnaires, or rating scales completed by third-party informants. In addition the design of the study was noted. To enable a comparison with studies undertaken in the USA and UK, dependent variables were grouped to form nine classes: (a) adaptive behaviour (e.g., self-care skills, domestic skills), (b) problem behaviour (e.g., aggression, self-injury), (c) participation in community activities and environments (e.g., community-based leisure activities, shopping in the community), (d) interactions with staff, (e) contact with family and friends, (f) community acceptance, (g) health status including mortality rates, (h) overall or general satisfaction as expressed by the clients themselves, and (i) overall or general satisfaction as expressed by parents.

The results of each study were examined to assess the effects of deinstitutionalisation and the degree of adjustment to community living. Results from individual studies for each dependent variable measured in that study were classified into one of four mutually exclusive categories: positive (+), negative (-), no change (0), or not applicable (n/a).

A positive result was recorded if the study reported increased or generally positive outcomes for adaptive behaviours, participation, interactions, contact, community acceptance, health, client/parental satisfaction, and/or decreased problem behaviour in the community. Alternatively, a negative result was recorded if there was decreased or generally negative reports for adaptive behaviour, participation, interactions, contact, community acceptance, health, client/parental satisfaction, and/or increased problem behaviour associated with community living. No change meant that there were no reported or observed differences or changes in the dependent variables when examin- ing adjustment to the community or in comparison to the institution. If a study did not measure a particular dependent variable, then n/a, was recorded.

Determination of positive and negative results or no change was made on the basis of the overall results reported in the individual studies. When quantitative data were presented, determination was based on whether statistically significant differences were reported. When data were qualitative, classification was based on the presence of a clear indication of positive or negative results, or no change. It should be recognised that a positive overall change in adaptive behaviour, for example, did not necessarily mean that each and every individual participant in that study showed

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increased adaptive behaviour. Rather, this would mean that there was a statistically significant positive change or that, in qualitative studies, there was a clear indication of an overall positive change for most of the participants.

This approach to the classification of outcomes has obvious limitations in that it may not adequately reflect variation within individual studies or fully characterise the richness of qualitative descriptions. Nonetheless, the approach is consistent with that used by Emerson and Hatton (1996) in their review of deinstitutionalisation studies in the UK and, therefore, provided a basis for comparison. To obtain inter-rater reliability, classification was conducted independently by two individuals. There was only one instance of disagreement between these two individuals. To settle this disagreement, a third person met with the two raters to reach consensus as to how best to classify the outcomes for that particular study.

RESULTS

Table 1 provides a summary of the 8 projects and 13 studies. Each study is identified by a letter A-M. The reference is given for each study followed by the State in which the study was conducted. Next, information is provided on the number of participants. This is followed by a brief description of each project. The name of the project is included where applicable.

Number, gender and age

The 8 projects and 13 studies listed in Table I involved 289 individuals with intellectual disability. Males and females represented 51 and 49% of the participants, respectively. The number of participants per study ranged from 5 to 98 with a mean of 36. These 289 individuals ranged from approximately 5 to 69 years of age. It was not possible to provide a frequency distribution of ages or an overall mean age because insufficient detail was provided in some studies. Nonetheless, while the participants in these studies included children, adolescents, and adults, the majority involved adults in the 20-40 year age range.

Degree of intellectual disability

Degree of intellectual disability among the 289 participants ranged from mild to profound. The breakdown by degree of intellectual disability is approximately as follows: (a) mild-13 %, (b) moderate-13%, (c) severe/profound-62%, and (d) unspeci- fied/unknown- 12%. These figures indicate that the majority of participants had significant intellectual disability. Those with severe/profound intellectual disability were also reported in some studies to have associated conditions such as physical disability, seizure disorders, and vision or hearing impairment.

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Tab

le 1

Sum

mar

y of

the

8pro

ject

s an

d 13

stud

ies

Proj

ect/

Stud

y St

ate

Part

icip

ants

B

rief

Sum

mar

y

A.

Stan

ton

& C

ook

(198

5)

WA

28

cli

ents

(21

-60

yrs)

wit

h un

spec

ifie

d le

vels

of i

ntel

lect

ual

disa

bili

ty.

B.

Jone

s(t9

g6)

NS

W

St. N

icho

las

Pro

ject

VIC

5 cl

ient

s (1

6-22

yrs

) wit

h m

oder

ate

to s

ever

e in

tell

ectu

al d

isab

ilit

y.

C.

Cum

min

s &

Dun

t (19

88)

D.

Dun

t & C

umm

ins

(199

0)

E.

Cum

min

s &

Dun

t (19

90)

F.

Cum

min

s et

al.

(199

0a)

G.

Ctm

tmin

s et

al.

(199

0b)

H.

Cum

min

s (1

993)

Que

stio

nnai

re o

n pa

rtic

ipat

ion

in a

va

riet

y of

ada

ptiv

e ac

tivi

ties

to

asse

ss h

ow w

ell

clie

nts

wer

e co

ping

w

ith

com

mun

ity

livin

g.

98 c

lien

ts (

5-26

yrs)

wit

h se

vere

/pro

foun

d in

tell

ectu

al

disa

bili

ties

.

Inte

rvie

ws

and

asse

ssm

ents

wer

e co

nduc

ted

wit

h cl

ient

s an

d st

aff t

o as

sess

lif

esty

le/a

dapt

ive

beha

viou

r in

com

mun

ity

hom

e.

Mea

sure

d a

vari

ety

of a

reas

(e.

g.,

adap

tive

/mal

adap

tive

beh

avio

ur,

heal

th,

qual

ity

of li

fe, c

omm

unit

y co

ntac

t) in

ins

titu

tion

and

aft

er

mov

e to

com

mun

ity

grou

p ho

mes

. In

clud

ed f

ollo

w-u

p of

cli

ents

fou

r ye

ars

afte

r m

ove

to c

omm

unit

y.

g,

g~

C5

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Tab

le 1

con

tinu

ed

Ric

hmon

d Pr

ogra

m

Mol

ony

& T

apli

n (1

990)

3.

Bar

low

& K

irby

(199

1)

K.

Bar

ber

et a

l. (1

994)

L.

Ford

& B

arlo

w (

1994

)

M

Bow

en &

Ger

ry (

1995

)

NSW

SA

VIC

SA

NSW

57 c

lien

ts (

18-6

9yrs

) w

ith

seve

re/p

rofo

tmd

inte

llec

tual

di

sabi

lity

. (2

6 cl

ient

s m

oved

to

com

mun

ity

and

31 r

emai

ned

in

inst

itut

ion)

31 c

tien

ts (

21-5

1 yr

s) w

ith

mil

d in

tell

ectu

al d

isab

ility

.

15 c

lien

ts (

30-5

7 yr

s) w

ith

mil

d-se

vere

int

elle

ctua

l di

sabi

lity.

45 c

lien

ts (

12-3

8 yr

s) w

ith

mil

d in

tell

ectu

al d

isab

ility

.

10 y

otm

g ad

ults

(no

age

ran

ge

give

n) w

ith

seve

re/p

rofo

und

inte

llec

tual

dis

abil

ity.

Mea

sure

d ch

ange

s in

ada

ptiv

e an

d pr

oble

m b

ehav

iour

in i

nsti

tuti

on a

nd

afte

r m

ove

to c

omm

unit

y.

Inte

rvie

wed

16

clie

nts

livi

ng in

in

stit

utio

n an

d 15

cli

ents

who

had

nm

ved

to c

omm

unit

y fr

om th

at

inst

itut

ion

abou

t sa

tisf

acti

on w

ith

thei

r liv

es.

Mea

sure

d ch

ange

s in

com

mun

ity

livi

ng s

kill

s, q

uali

ty o

f lif

e, a

nd

acti

vity

in in

stit

uion

and

aft

er m

ove

to c

omm

unit

y.

Ass

esse

d th

e im

pact

on

fam

ilie

s w

hen

sons

/dau

ghte

rs w

ere

mov

ed

from

nur

sing

hom

e to

com

mun

ity

grou

p ho

mes

.

Ass

esse

d ad

apti

ve a

nd p

robl

em

beha

viou

r in

ins

titu

ion

in 1

984

and

in c

omm

unit

y in

199

2,

At

the

tim

e of

sec

ond

asse

ssm

ent,

all h

ad b

een

livi

ng f

or a

t le

ast

3 ye

arn

t~

r~

o,x

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Settings and environments

Studies were conducted in four of Australia's six States: Victoria, New South Wales, South Australia, and Western Australia. Seven of the 13 studies were conducted in Victoria, followed by New South Wales (3 studies), South Australia (2 studies), and Western Australia (1 study). Of the seven studies conducted in Victoria, six reported on a single project. This project involved the closure of St. Nicholas Hospital and the relocation of all 98 residents to one of 23 community-based group homes. The closure of St. Nicholas Hospital occurred over a 9-month period from July 1984 to March 1985.

All but 5 of the 289 participants had lived in an institution at some time in their life. Most (84%) of these persons had been relocated to the community; 47 (16%) remained in institutions. Data on the length of time participants had lived in institutions were available for 236 (82%) of the 289 participants. These data ranged from less than one year to 55 years, with means for individual studies ranging from 3.5 to 20.3 years. Most participants had been institutionalised for 8 to 9 years.

The 242 participants who had been relocated to the community lived in a variety of settings. Specifically, 17 individuals were described as living independently, primarily in rental apartments. Twenty-three clients were living in shared accommodation with support. More than half (n = 142 or 59%) had moved to community-based group homes. These were mainly regular homes in suburban areas. Group homes generally housed 5-6 clients and had 24-hour staff supervision or support. The 60 remaining individuals were living in undefined community-based residences.

Estimates of the amount of time residents had been living in the community could be calculated for 235 of the 242 clients. Two figures were calculated: the time clients had been living in community-based residences when the initial round of data was collected in the community; and, for studies that involved more than one round of data collection, the time clients had been living in the community at the final round of data collection.

At the initial round of community data collection, participants had been living in the community from one month to 8 years, with an overall mean of approximately 16 months. At the time of the final round of data collection, clients had lived in the community for 4 years. Only 98 participants from the St. Nicholas project were involved in more than one round of data collection in the community, so there is no range for this latter calculation.

Another relevant statistic is the rate of reinstitutionalisation. Molony and Taplin, (1990) were the only researchers to report on reinstitutionalisation. They indicated that none of the 26 participants in their study was reinstitutionalised during the 12 month study period. It might be presumed that reinstitutionalisation had not occurred in the other studies as well, but there was unexplained attrition in the St. Nicholas project. Specifically, of the initial 98 clients in this project, 85 continued to live in the community-based group homes at a four-year follow-up (Cummins, Polzin, & Theobald, 1990b). This loss of 13 clients was not fully detailed, although some died during that period. It should be noted that there was no increase in the death rate upon relocation to the community (Cummins, 1993).

Related to reinstitutionalisation is the issue of community stability, that is, how long

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DeinstitutionaIisation 163

clients remained in their initial placement before moving to other living arrangements. None of the investigators reported on stability, although this could indicate that there was little or no additional movement once clients had been placed in the community. The stability of initial commtmity-based placements remains unclear.

METHODOLOGIES

Foci

As indicated by the descriptions in Table 1, 12 of the 13 studies focused mainly on collecting data about the behaviours or lifestyles of the individuals with intellectual disabilities themselves. In contrast, Ford and Barlow (1994) studied the impact of deinstitutionalisation for the families of 45 people who had been moved from institutional to community-based services. To some degree, all of these studies ascertained how well clients with intellectual disabilities were adjusting to life in the community.

Designs

Three research designs were used to investigate the effects of deinstitutionalisation and the degree of community adjustment. First, nine of the 13 studies involved pre-post designs. These consisted of an assessment of clients when they were living in the institution and at least one assessment after they had been relocated to the community. One of the nine studies (Molony & Taplin, 1990) also included a control group of 31 clients who remained in the institution over the period of the study. Thus, eight studies were pre-experimental. However, collection of data pre and post meant that each participant served as his or her own control and this enabled the effects of deinstitutionalisation to be assessed at the level of the individual client. Second, three studies employed post-hoc analyses (Ford & Barlow, 1994; Jones, 1986; Stanton & Cook, 1985), involving a single round of data collection in the community. Although clients in these studies had previously lived in institutions, comparable data had not been collected when the clients were living in the institution. Thus, while these studies provide information on community adjustment, they did not investigate the effects of deinstitutionalisation per se. Third, the remaining study (Barlow & Kirby, 1991) involved a comparative design. Specifically, life satisfaction was compared for two groups of adults: one group lived in the community and the other in an institution. This design is also pre-experimental because the clients, although comparable in terms of age and level of intellectual disability, were neither matched nor selected randomly.

Procedures

Five procedures were used to collect data on the effects of deinstitutionalisation and adjustment to community living. These procedures were: (a) interview, (b) document review, (c) structured questionnaire, (d) completion of standardised third-party rating scales/assessment devices, and (e) direct observation. Interview procedures included the use of semi-structured and open-ended protocols. In three of the 13 studies,

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164 Young, Sigajbos, Suttie, Ashman, & Grevell

interviews were used to collect information from both staff and clients. A review of existing documents was used in one study (i.e., Jones, 1986) to collect information on existing programs, client participation in meetings at the group home, and client responsibilities within the group home. In 6 of the 13 studies, structured questionnaires were used to collect information from staff, parents, and other relevant professionals (5 studies) or from the clients themselves (1 study). The questionnaires used in these studies included formal and informal devices. Some questionnaires were adapted from existing devices; others were developed specifically for a particular project. For example, Barlow and Kirby (1991) used an adapted version of the Satisfaction Questionnaire of the Community Adjustment Scale (Seltzer & Seltzer, 1978) to assess client satisfaction with various aspects of their life (e.g., residential setting, leisure, work environment). The questionnaire was administered to clients who rated their degree of satisfaction for each of 32 items using a "yes/no/not sure" scale. Overall satisfaction for some sections of the questionnaire were also rated on a five-point scale ranging from "very happy" to "very unhappy." Cummins and Dunt (1990) developed four questionnaires to assess changes in (a) clients' routines and activities, (b) parents' knowledge and attitudes towards their child's relocation to the community, (c) nature of the client's day program, and (d) a police contact questionnaire was designed to determine if the clients had been involved in any incidents that would require police involvement. These four questionnaires were completed by relevant third-party informants (staff, parents). Various standardised rating scales were used to obtain an objective assessment of adaptive functioning among the clients in six studies. The devices used in these studies included the AAMD Adaptive Behavior Scale (Nihira, Foster, Shellhaas, & Leland, 1974), Adaptive Functioning Index (Marlett, 1973), Progress Assessment Chart of Social Development (Gunzburg, 1978), and the Vine- land Adaptive Behavior Scales (Sparrow, Balla, & Cichetti, 1984). These assessments were usually completed by staff serving as third-party informants. Direct and systematic observational procedures were used in two projects to provide objective measures of client behaviour and activities (Barber, Cooper, & Owen, 1994; Dunt & Cummins, 1990). In addition, a third study (Jones, 1986) used informal observations related to interactions among staff and the five clients in a community-based group home. It should be noted that 8 of the 13 studies used a combination of procedures. For example, within the St. Nicholas Project various combinations of questionnaires, direct observation, and standardised rating scales were used. However, five studies used only one procedure. Of these, two employed only adaptive behaviour rating scales, two used only questionnaires, and one study used only interviews with staff and clients.

Effects of deinstitutionalisation and degree of adjustment to community living

Outcomes from the 13 studies are summarised in Table 2. The most commonly measured dependent variable was adaptive behaviour, including self-care, daily living, communication, and social skills. Seven studies found positive outcomes in this domain, one reported both positive and negative outcomes, and one revealed no change. The negative outcome was reported by Barber et al. (1994), who found that " . . . there was a significant reduction in the mean percent of appropriate social behavioral skills

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performed independently." (p. 254). However, these authors also noted improvements in other adaptive behaviours, such as recreation and leisure skills.

Clear outcomes for problem behaviour, such as aggression and property destruction, were available in three instances. One study recorded an increase in some problem behaviours, and two other studies found no change in the frequency or severity of problem behaviour. It should be noted, however, that there was disagreement as to how best to classify the results from Study D by Dunt and Cummins (1990). Because these authors indicated that, unlike the improvement noted in certain self-help skills and positive social behaviour, there was " . . . no such improvement in negative social behaviour, idiosyncratic or stereotyped behaviour." (p. 16), we decided to classify these results as an example of no change.

Among the six studies that monitored community participation, such as increased social interaction, increased recreational and leisure activities, and greater use of community facilities, all reported positive outcomes. Usable information on interactions with staff was provided in one study (Jones, 1986) and the outcomes were classified as positive. Contact with family/friends was documented in five studies and the results were all positive. There was no clear evidence of improved community acceptance and it was difficult to determine from the studies whether the participants were interacting significantly with people without disabilities in the community. Health/ mortality did not change in the three studies reporting on this measure (all three from the St. Nicholas Project). Client and parental satisfaction were assessed in four and two studies, respectively. In all instances, general satisfaction with community-based services was indicated.

Table 2

Number of studies reporting positive, negative, or no change for each of nine dependent variables

Dependent variable Positive Negative No change

Adaptive behaviour 7 (B,C,D,EH,I,K) I(K) 1 (M) Problem behaviour 0 1 (M) 2 (D,I) Community participation 6 (B,C,E,G,H,K) 0 0 Interactions with staff 1 (B) 0 0 Contact with family/friends 5 (B,C,E,G,H) 0 0 Community acceptance 0 0 1 (E) Health/mortality 0 0 3 (C,D,H) Client satisfaction 4 (A,B,J,K) 0 0 Parent satisfaction 2 (EJ~) 0 0

DISCUSSION

This article reviewed Australian studies on deinstitutionalisation and community living for persons with intellectual disabilities. Thirteen studies were located which evaluated the effects of relocating persons from institutions to community-based residences,

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involved a comparison of institutional versus community-based services, or investigated the community adjustment of people who had once lived in an institution. In total the studies generated outcome data for 289 individuals with intellectual disability. A variety of methodologies was used to collect data on nine major categories of outcomes.

The outcomes from these studies are generally positive and consistent with trends found in the much larger databases produced by research conducted in other Western countries, principally the USA and UK (Emerson & Hatton, 1996; Hatton et al., 1995; Lakin et al., 1995, 1996; Larson & Lakin, 1989). Trends suggest that community living is associated with improvement in adaptive behaviour, increased community participation and greater contact with family/friends. Community placements were also associated with greater overall satisfaction, as expressed by both the clients and their parents. However, consistent with data from the USA and UK, is the finding that problem behaviours were not necessarily minimised in community-based settings.

The summary of outcomes reported in this paper needs to be interpreted with caution. Classification was based on overall outcomes and did not take into account the range of outcomes. In addition, it was often difficult to classify the results from some studies as positive, negative, or no change because investigators mainly collected qualitative data. Furthermore, it was unknown whether reported improvements in participation were socially significant (e.g., one outing per month to two per month is an increase, but may not be enough to be perceived as significant). In considering levels of community" participation, a normative reference is needed--this is lacking in USA, UK, and Australian literatures (Emerson & Hatton, t996).

The 13 studies reviewed here refer to participants with a wide range of ages and include people with severe to profound levets of disability. However, compared to USA and UK studies, the scope of the Australian studies is very limited. It is possible that some studies may have been overlooked but, if so, the number is not likely to be great. The relatively limited size of the database is perhaps to be expected. Nonetheless, the small number of studies could indicate that many deinstitutionalisation projects are not being evaluated. Although institutional reform has occurred in other states (e.g., Queensland, Tasmania), it appears that no reports of these projects have yet been published in refereed journals. A study on the relocation of residents from an institution in Queensland is currently in progress. The lack of such reports makes it difficult to formulate policy decisions and determine the effectiveness of community-based service provision models being used to meet the needs of individuals with intellectual disabilities.

A major deficit in the literature is the lack of information on independent variables in the studies reviewed here. In many instances, relocation was treated as the independent variable. Although a variety of settings was used in these 13 studies, they were often merely named, rather than described. For example, reported settings ranged from independent living in rental apartments, shared accommodation with support, community-based group homes, and other settings referred to as community settings or community-based residential accommodations. The most commonly reported setting was that of group home. However this is an ambiguous term which has been understood to include any number of individuals--from a small group of 3 or 4 persons, through to as many as 16 residents (Larson & Lakin, 1989).

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Although relocation to the community is, indeed, an independent variable, it is multi-faceted and should include descriptions of the move and services provided. Indeed, there is little account of types of services being provided in specific settings. Residential setting is one of the most important factors in facilitating services to individuals: the physical placement in terms of community and service access; the availability of programs and opportunities for social interaction; the degree of choice and flexibility for residents; and the potential for meeting a variety of changing needs as they arise.

The availability and provision of services is important as individuals may be at risk of reinstitutionalisation, for example if a problem behaviour is unmanageable (Davidson et al., 1994; Landesman, 1987; Paget & Whitling, 1978). Although reinstitutionalisation did not appear to be a problem in these studies, it could be in the future, as residual institutional populations may be those with the most severe and challenging behaviours. This could well be the case, given that the studies in this review and those of the USA and UK report fewer consistently positive outcomes on problem behaviours. There is a need to focus on the development of community-based services that can accommo- date and support these people and to determine empirically if positive outcomes occur for these individuals.

A distinction should be drawn between the immediate effects of a move, and the impact of services to ensure long-term maintenance and continued development, or at least to ensure there is no regression. This may be related to aging, or changes over time. As people reside longer in the community there may be a need for additional or different services as they age. Another hypothesis is that enthusiasm may wane over time and services could deteriorate. This again suggests that studies are needed which monitor quality of services over time.

Although a variety of data collection methods was used in the reviewed studies, little direct observation was reported. Direct observation is a strength of UK literature. Instead, a reliance on third-party informants was noted along with the use of informal scales with unknown psychometric properties. Furthermore, many studies were also limited in the range of dependent variables studied. The St. Nicholas project, however, is exemplary. The studies associated with this project used a variety of procedures and assessed a comprehensive range of dependent variables. Although some of the other studies also involved a range of data collection methods and dependent variables, many assessed only one dependent variable with one or a very few generally indirect methods. To reliably capture a change in lifestyle it is necessary to monitor a range of areas, some of which may increase, while others may have negative outcomes. Identifying those negative outcomes would not necessarily mean discontinuing a community option, but rather strengthening services to bridge the gap in identified needs.

In general, the research designs used in the Australian studies were relatively weak. Most used a pre-post component, only one study included a control group, and some involved only post-hoc analysis. In the latter case, nothing can be said about the effects of deinstitutionalisation. Rather, the analysis can provide only limited information on perceived current adjustments to community living.

Problems arising with less than rigorous research design are no doubt partly due to

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ethical and logistical reasons which render random assignment difficult. However, client information collected from multiple rounds of data collection following a move to the community (as in the St. Nicholas studies) could be used in a formative manner to alert service providers to potential problems and implement changes in a timely manner.

In conclusion, Australian studies of institutional reform show results consistent with similar studies in other Western countries. This review, however, highlights concerns regarding the limited number of Australian studies and the methodologies used in design and data collection. Future research is needed to build on the current knowledge base, and should incorporate a range of procedures within rigorous resem'ch design. For example, it would be helpful to delineate minimum data requirements for future deinsititionalisation research, such as data on consumer views and outcomes, rates of reinstitutionalisation, placement stability in the community and among those remaining in the institution, and more detail on the characteristics of the institutional and community living environments and services. Given the absence of such information in the studies reviewed here, future research should also examine issues such as service costs, provision of day programs and related therapy, and quality of life. The absence of more comprehensive analyses of quality of life is surprising given that Australian researchers are producing a considerable amount of work on this topic in relation to persons with developmental disabilities (Brown, 1997; Cummins, McCabe, Romeo, Reid, & Waters, 1996; Parmenter, 1994). Despite these limitations, the Australian database reviewed in this article provides a degree of empirical support for the continued development of community-based living options for persons with intellectual disabilities.

Acknowledgement

The preparation of this manuscript was supported by grants from the Australian Research Council, The University of Queensland and the Queensland Depart- ment of Families, Youth and Communi O, Care.

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Deins t i t u t i ona l i sa t i on 169

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deinstitutionalisation of persons with intellectual disabilities: a review of australian studies

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