Australia

Deinstitutionalisation and Housing Futures

The full text of this report by the Australian Housing and Urban Research Institute into the housing futures of people with an Intellectual Disability who have been or will be deinstitutionalised is available at:

http://www.ahuri.edu.au/attachments/pr_dehousfuture.pdf

Cached:

not completed

Deinstitutionalisation and Housing Futures

Work in Progress Report

prepared by the

Australian Housing and Urban Research Institute

University of New South Wales &

University of Western Sydney Research Centre

authored by

Lisa Bostock, Brendan Gleeson,

Ailsa McPherson and Lillian Pang

January 2001

ACKNOWLEDGEMENTS

This material was produced with funding from the Commonwealth of Australia and

the Australian States and Territories. AHURI Ltd gratefully acknowledges the

financial and other support it has received from the Commonwealth, State and

Territory governments, without which this work would not have been possible.

The project team would also like to acknowledge the generosity of all those who have

participated in the study and thank them for their time, continuing commitment and

encouragement during the course of the research.

iii

Table of Contents

CHAPTER 1. INTRODUCTION ......................................................................................................................1

1.1 Introduction..............................................................................................................................................1

CHAPTER 2. POSITIONING PAPER ............................................................................................................2

2.1 Introduction..............................................................................................................................................2

2.2 Previous research....................................................................................................................................2

2.3 National policy context...........................................................................................................................3

CHAPTER 3. METHODOLOGY .....................................................................................................................6

3.1 Introduction..............................................................................................................................................6

3.2 Research questions..................................................................................................................................6

3.3 Methods.....................................................................................................................................................6

3.4 User group................................................................................................................................................7

3.5 Analysis.....................................................................................................................................................7

CHAPTER 4. PRELIMINARY RESEARCH FINDINGS .........................................................................8

4.1 Introduction..............................................................................................................................................8

4.2 Differences between States and Territories concerning recent housing outcomes of

deinstitutionalisation in Australia...............................................................................................................8

4.3 Housing support mechanisms in Australia and similarities with the overseas experience........9

4.4 Projected rates of deinstitutionalisation for each jurisdiction for the period 2000-2010?......10

4.5 Deinstitutionalisation policy and housing futures...........................................................................11

CHAPTER 5. CONCLUSIONS .......................................................................................................................13

5.1 Summary of preliminary findings.......................................................................................................13

5.2 Project completion................................................................................................................................13

REFERENCES .....................................................................................................................................................15

APPENDIX A: LIST OF STATE/TERRITORY RESPONDENTS ......................................................17

APPENDIX B: USER GROUP.........................................................................................................................22

Table of Figures

Figure 2.1 Number of people with a profound or severe handicap aged 5-64 years by residence (‘000),

Australia, 1981, 1988 and 1993..................................................................................................................4

Figure 4.1 Projected numbers leaving institutional care by target date......................................................11

Chapter 1. Introduction

1.1 Introduction

This paper reports research by Australian Housing and Urban Research Institute:

University of New South Wales and University of Western Sydney Research Centre

that is examining the housing futures of intellectually disabled people who have been,

or will be, deinstitutionalised.

This Work-in-Progress Report represents the third milestone of the AHURI project

‘Deinstitutionalisation and Housing Futures’.

This project aims to:

1. document the forward plans for deinstitutionalisation in each State and Territory,

focusing on the 2000-2010 time frame;

2. review and describe the recent housing outcomes from deinstitutionalisation in

Australia, drawing upon evidence documented in Australia and other relevant

policy contexts, and noting any differences between State/Territory experiences;

3. involve service agencies directly in the research and in consideration of its

findings; and

4. outline the broad policy implications of findings on the above and make

recommendations for policy development;

The paper reports early findings from the study and will address aims one to three.

The paper will document numbers of people expected to move from residential

institutions into ‘community’ based living arrangements with each State/Territory

over the next 10 years. It reviews recent housing outcomes from deinstitutionalisation

and describes differences between State/Territory experiences. A User Group has

been constituted in order to involve directly service agencies in the development of

the research and consideration of its findings.

The policy implications concerning the above findings will be outlined in the Final

Report.

Chapter 2. Positioning Paper

2.1 Introduction

This chapter will summarise the key points from the Positioning Paper which was

submitted to AHURI in December 2000. The Positioning Paper described the policy

issues addressed through the project, provided a comprehensive review of the

academic literature in relation to such issues, and detailed the research methods by

which new information would be provided to inform policy development. Please

refer to the Positioning Paper for the full details on the literature review, policy

context and methodology.

2.2 Previous research

The original aims of deinstitutionalisation were to provide disabled people with the

opportunity for as ‘normal’ a life as possible within the broader community

(Maddison 1998). Normalisation (later, ‘social role valorisation’) demanded that

service users had the right to the ‘least restrictive living setting’, meaning a care

environment that restricts individual freedom only to the minimum extent needed to

ensure broader community well-being (Shannon & Hovell 1993).

Historically, disabled people had been treated as though they were ill or a threat to

society. It was felt that disabled people needed to be locked away to protect both

themselves and the general community. These attitudes led to the development of

geographically segregated residential facilities such as long stay mental hospitals,

training centres and nursing homes (Evans 1996). However, since the 1960s, all

Western governments have embarked on major deinstitutionalisation programs and

sought to replace large congregate care facilities for disabled people with community

care networks. These networks have been largely built around small scale,

neighbourhood-based facilities that sought to mimick ‘typical’ suburban homes. Such

facilities have been commonly referred to in Australia as ‘group homes’.

However, there have been notable shifts in community expectations of housing

outcomes from deinstitutionalisation in recent years (Ellis 1998). Disability activists

have challenged stigmatising dualisms that construct host communities as ‘normal’

and thereby render the experiences of disabled people as ‘abnormal’. At the same

time, ‘community life’ has become increasingly diversified. During the 1960s, the

creation of ‘group homes’ mirrored a homogenised model of white, middle class

values and lifestyle aspirations: ‘ordinary houses in ordinary streets’.

This model of typical home life has been rendered increasingly anomalous by broad

currents of social and cultural change in recent decades. Social pluralisation –

measured by changes in household structure, ethnic background and cultural

diversification – has been associated with a greater plurality of housing experiences

and accommodation choices amongst the general community. This poses a challenge

to disability and housing policy to meet the housing needs of deinstitutionalised

disabled people in ways that reflect an emphasis on flexibility, individuality and

choice.

2.3 National policy context

Since the early 1990s significant numbers of intellectually disabled people have

moved from large congregate care facilities into community based options. On the

basis of figures supplied by Commonwealth and State/Territory health and welfare

agencies, Neilson Associates (1990) compiled a (very approximate) picture of the

number of disabled people still resident in institutions. On a national basis they

estimated that in 1988, approximately 7,500 people with intellectual disabilities were

living in large State or private residential centres or psychiatric hospitals. At least

another 1300 people with intellectual disabilities were estimated to be living in

smaller hostel type institutions of 12-30 people each (Neilson Associates 1990: 8).

Since the introduction of the Commonwealth State Disability Agreement (CSDA) in

1991, the Australian Institution of Health and Welfare (AIHW) has collected data on

accommodation services funded through the Agreement. In 1999, there were 4,340

people whose primary disability is intellectual 1 accessing institutional services on the

snapshot day of the 1999 CSDA Minimum Data Set data collection. A further 630

people were living in hostels (AIHW 2000: 19).

Although these data are not directly comparable, it is possible to deduce that 2,500

people have moved from large residential institutions over the past 10 years. The

number of people living in hostels has halved since estimates were produced in the

Neilson Associates study.

The last 15 years have seen a number of significant reforms that have reshaped social

and housing policy frameworks in Australia, including a strategic emphasis on

deinstitutionalisation and the restructuring of housing assistance. In particular, the

Commonwealth Disability Services Act 1986 (CDSA) detailed in its Principles and

Objectives the rights of disabled people to live within ‘community’ rather than in

segregated settings. The CDSA replaced the Handicapped Persons Welfare Program

and promoted a broader range of services than previously allowed, including an

emphasis on innovative community housing options:

Accommodation support should not lock programs into one or two models. It

should not be confined to group homes. It should be as flexible as the wide

range of living options in the community generally and the ways that could be

used to support individuals in those living options e.g. share houses or flats,

co-tenancy or live-arrangements or married living arrangements, or drop-in

support models (Department of Community Services 1987: 1 in Hardwick et

al, 1987: 32).

However, the CDSA created overlap and confusion in the funding arrangements for

disability services by the different levels of government (Yeatman 1996). In 1991 the

CSDA, was developed to rationalise these arrangements. The CSDA delineated areas

of responsibility, making State and Territory governments responsible for

accommodation and lifestyle services and the Commonwealth responsible for

employment services (Maddison 1998).

1 The figures refer only to people whose primary disability is intellectual. There may have been

additional people with an intellectual disability as a secondary disability (e.g. their ‘primary’ disability

may have been identified as physical or acquired brain injury) living in institutions or hostel

accommodation services.

2.3 National policy context

Since the early 1990s significant numbers of intellectually disabled people have

moved from large congregate care facilities into community based options. On the

basis of figures supplied by Commonwealth and State/Territory health and welfare

agencies, Neilson Associates (1990) compiled a (very approximate) picture of the

number of disabled people still resident in institutions. On a national basis they

estimated that in 1988, approximately 7,500 people with intellectual disabilities were

living in large State or private residential centres or psychiatric hospitals. At least

another 1300 people with intellectual disabilities were estimated to be living in

smaller hostel type institutions of 12-30 people each (Neilson Associates 1990: 8).

Since the introduction of the Commonwealth State Disability Agreement (CSDA) in

1991, the Australian Institution of Health and Welfare (AIHW) has collected data on

accommodation services funded through the Agreement. In 1999, there were 4,340

people whose primary disability is intellectual 1 accessing institutional services on the

snapshot day of the 1999 CSDA Minimum Data Set data collection. A further 630

people were living in hostels (AIHW 2000: 19).

Although these data are not directly comparable, it is possible to deduce that 2,500

people have moved from large residential institutions over the past 10 years. The

number of people living in hostels has halved since estimates were produced in the

Neilson Associates study.

The last 15 years have seen a number of significant reforms that have reshaped social

and housing policy frameworks in Australia, including a strategic emphasis on

deinstitutionalisation and the restructuring of housing assistance. In particular, the

Commonwealth Disability Services Act 1986 (CDSA) detailed in its Principles and

Objectives the rights of disabled people to live within ‘community’ rather than in

segregated settings. The CDSA replaced the Handicapped Persons Welfare Program

and promoted a broader range of services than previously allowed, including an

emphasis on innovative community housing options:

Accommodation support should not lock programs into one or two models. It

should not be confined to group homes. It should be as flexible as the wide

range of living options in the community generally and the ways that could be

used to support individuals in those living options e.g. share houses or flats,

co-tenancy or live-arrangements or married living arrangements, or drop-in

support models (Department of Community Services 1987: 1 in Hardwick et

al, 1987: 32).

However, the CDSA created overlap and confusion in the funding arrangements for

disability services by the different levels of government (Yeatman 1996). In 1991 the

CSDA, was developed to rationalise these arrangements. The CSDA delineated areas

of responsibility, making State and Territory governments responsible for

accommodation and lifestyle services and the Commonwealth responsible for

employment services (Maddison 1998).

1 The figures refer only to people whose primary disability is intellectual. There may have been

additional people with an intellectual disability as a secondary disability (e.g. their ‘primary’ disability

may have been identified as physical or acquired brain injury) living in institutions or hostel

accommodation services.

3

2.3 National policy context

Since the early 1990s significant numbers of intellectually disabled people have

moved from large congregate care facilities into community based options. On the

basis of figures supplied by Commonwealth and State/Territory health and welfare

agencies, Neilson Associates (1990) compiled a (very approximate) picture of the

number of disabled people still resident in institutions. On a national basis they

estimated that in 1988, approximately 7,500 people with intellectual disabilities were

living in large State or private residential centres or psychiatric hospitals. At least

another 1300 people with intellectual disabilities were estimated to be living in

smaller hostel type institutions of 12-30 people each (Neilson Associates 1990: 8).

Since the introduction of the Commonwealth State Disability Agreement (CSDA) in

1991, the Australian Institution of Health and Welfare (AIHW) has collected data on

accommodation services funded through the Agreement. In 1999, there were 4,340

people whose primary disability is intellectual 1 accessing institutional services on the

snapshot day of the 1999 CSDA Minimum Data Set data collection. A further 630

people were living in hostels (AIHW 2000: 19).

Although these data are not directly comparable, it is possible to deduce that 2,500

people have moved from large residential institutions over the past 10 years. The

number of people living in hostels has halved since estimates were produced in the

Neilson Associates study.

The last 15 years have seen a number of significant reforms that have reshaped social

and housing policy frameworks in Australia, including a strategic emphasis on

deinstitutionalisation and the restructuring of housing assistance. In particular, the

Commonwealth Disability Services Act 1986 (CDSA) detailed in its Principles and

Objectives the rights of disabled people to live within ‘community’ rather than in

segregated settings. The CDSA replaced the Handicapped Persons Welfare Program

and promoted a broader range of services than previously allowed, including an

emphasis on innovative community housing options:

Accommodation support should not lock programs into one or two models. It

should not be confined to group homes. It should be as flexible as the wide

range of living options in the community generally and the ways that could be

used to support individuals in those living options e.g. share houses or flats,

co-tenancy or live-arrangements or married living arrangements, or drop-in

support models (Department of Community Services 1987: 1 in Hardwick et

al, 1987: 32).

However, the CDSA created overlap and confusion in the funding arrangements for

disability services by the different levels of government (Yeatman 1996). In 1991 the

CSDA, was developed to rationalise these arrangements. The CSDA delineated areas

of responsibility, making State and Territory governments responsible for

accommodation and lifestyle services and the Commonwealth responsible for

employment services (Maddison 1998).

1 The figures refer only to people whose primary disability is intellectual. There may have been

additional people with an intellectual disability as a secondary disability (e.g. their ‘primary’ disability

may have been identified as physical or acquired brain injury) living in institutions or hostel

accommodation services.

4

The first CSDA required the introduction of legislation by each State/Territory that

parallels the CDSA. Between 1991 and 1993 each State/Territory introduced its own

Disability Services Act. Attempts to operationalise the principles of the CDSA were

undertaken and many institutions closed across Australia.

Analysis by the AIHW of Australian Bureau of Statistics (ABS) data shows how

institutional numbers declined during the 1980s and early 1990s. The amount of

people aged 5-64 years with a ‘severe or profound handicap’ who lived in

establishments 2 declined, while numbers residing in households rose steadily over the

past 20 years.

It should be noted that ‘severe or profound handicap’ refers to a wider range of

disabilities than reported on in our research which focuses on the housing futures of

intellectually disabled people.

Figure 2.1 shows that estimates of numbers of people living in households rose over

the years 1981, 1988 and 1993. The increase between 1981 and 1993 was 42.9% or

104,900. In contrast, the number of people who lived in establishments has dropped

by 29.1% or 7,900 (in Madden et al 1999, pp.10-11).

Figure 2.1 Number of people with a profound or severe handicap aged 5-64 years by

residence (‘000), Australia, 1981, 1988 and 1993

No. with profound or severe

handicap

% change in numbers

1981 1988 1993 1981-98 1988-93 1981-93

Households 244.1 302.5 349.1 23.9 15.4 42.9

Establish’ts 27.0 24.2 19.2 -10.5 -20.8 -29.1

Source: Madden et al 1999: 11

The closure of institutions was aided by certain Commonwealth housing and urban

policies such as the Better Cities Program that aimed in part to redevelop former

institutional sites in partnership with disability services agencies. The

Commonwealth Community Housing Program aimed to grow community managed

housing across Australia by providing capital grants to develop new community

housing initiatives. Both programs ceased to make new capital grants in 1996 after

the election of the Howard government (Forster 1999; Office of Housing 2000). Cuts

to Commonwealth government programs reflected a commitment to reducing the

Budget deficit and represented the largest public spending cuts in Australia’s history

(Cleary and Millett 1996).

2 Establishments are defined by the ABS as hospitals, nursing homes, hostels, retirement villages and

other ‘homes’.