The Journal of

Aging and SocialChange

VOLUME 8 ISSUE 1

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A Problem SharedA Critical Review of the Disparities in Ageing and

Disability Accommodation Models in Australia

GRACE BITNER AND JILL FRANZ

THE JOURNAL OF AGING AND SOCIAL CHANGE http://agingandsociety.com ISSN 2576-5310 (Print) ISSN 2576-5329 (Online) http://doi.org/10.18848/2576-5310/CGP (Journal)

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The Journal of Aging and Social Change Volume 8, Issue 1, 2017, www.agingandsociety.com © Common Ground Research Networks, Grace Bitner, Jill Franz, Some Rights Reserved, (CC BY-NC-ND 4.0).Permissions: support@cgnetworks.orgISSN: 2576-5310 (Print), ISSN: 2576-5329 (Online) http://doi.org/10.18848/2576-5310/CGP/v08i01/13-26 (Article)

A Problem Shared: A Critical Review of the Disparities in Ageing and Disability

Accommodation Models in Australia Grace Bitner,1 Queensland University of Technology, Australia

Jill Franz, Queensland University of Technology, Australia

Abstract: In Australia, there currently exists a large disparity between the accommodation models available in the aged care and disability sectors, specifically in relation to institutional living. At the same time that institutions are actively discouraged (and legislated against in some areas) for younger individuals with disability, they remain a dominant and growing model for older members of society unable to care for themselves. Further to this, there is evidence that newer accommodation models are concurrently being held up as innovative in one sector and heavily criticised in the other. This article critically reviews the history of each sector in Australia to identify factors that have contributed to this schism. Factors highlighted range from government policy, advocacy, human rights legislation, and lack of alternatives, through to structural forces (such as universal healthcare). This comparative review also considers research from other parts of the world, where similar discrepancies have been identified. A number of solutions are proposed to this problem for researchers, policy makers, and front-line workers. Given that essentially both camps are grappling with the same core problem, specifically how to house and care for individuals who are unable to fully care for themselves, it is timely that we address this human rights issue and start working toward greater alignment and equity.

Keywords: Aged Care, Disability, Housing Models, Human Rights, Equity

Introduction

n Australia, the aged care and disability sectors grapple with many of the same challenges, particularly in relation to the housing and care of individuals who are unable to fully care for themselves. This is by no means surprising, given statistical estimates that 1.7 million of the

3.3 million people aged 65 years and over have a disability (Australian Bureau of Statistics 2012). What is more surprising, however, is the evidence of a lack of knowledge sharing between the two sectors. This disconnect is not unique to Australia and has been highlighted by researchers around the developed world (Kröger 2009; Jönson and Larsson 2009; Rummery and Fine 2012; Szebehely 2013). Szebehely (2013, 5) identifies that “although disability research and eldercare research have a common focus on people in need of support in everyday life, the two fields have had few points of common interest.” Other research has concentrated on the differences in ideologies and approaches that underpin the provision of care (Kröger 2009; Jönson and Larsson 2009; Rummery and Fine 2012; Szebehely 2013; Jönson and Harnett 2015). Notably less attention, however, has been paid to how these differences are manifest within the built environment.

This article critically examines the dissimilarities in housing and accommodation options available within the disability and aged care sectors in Australia. The core question that underpins this examination is: Why are large institutions no longer considered appropriate for the housing and care of individuals with permanent and lifelong disabilities, yet continue to be a dominant and expanding model in the aged care sector? In answering this question, the article first reviews the evolution of the two systems over time within Australia, to identify some of the factors that have contributed to the present state of significant (and growing) discrepancy. Following this, it gives consideration to the current landscape and recent wholesale changes that

1 Corresponding Author: Grace Bitner, 2 George Street, School of Design, Queensland University of Technology, Brisbane, Queensland, 4000, Australia. email: grace.bitner@qut.edu.au

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have occurred within each sector, before finally looking forward to the potential ways to address this problem.

Approach

This critical examination was generated as a result of two comprehensive literature reviews undertaken within separate research projects. The first literature review was conducted as part of a government funded study of housing options for individuals with disability (Franz et al. 2014). This project utilised Grounded Theory (Charmaz 2006) as the overarching methodology, with a multiple case study approach (informed by Yin 2009). A range of data was collected from four case study organisations, as well as a sampling of individuals with disability and their families. The literature review conducted within this project captured both the present-day landscape and the physical, social, political, and economic evolution of housing options for individuals with disability and their families within Australia. The second review was undertaken as part of an author’s PhD study, which explores the built environments of residential aged care in Australia. This second project also utilised the common methodology of Grounded Theory, with data collected from two embedded case studies. The concurrent timing of both projects has facilitated the meta-level, cross sectorial comparisons and findings in this article. In order to better understand the current situation in Australia, within both the aged care and disability sectors, it is important to first consider the historical forces that have shaped the systems in operation today. The following is a summary of the literature review undertaken within the first study and captures the evolution of accommodation options for individuals with permanent and lifelong disabilities.

Deinstitutionalisation for Individuals with Disability in Australia

Like many other developed nations, since the early 1980s in Australia, there has been a movement to “close institutions for individuals with a developmental disability and accommodate them in small group homes, hostels, boarding houses, and independently supported accommodation within the community” (Intellectual Disability Services Council 1994; Baladin and Chapman 2001, 38.3).

Reviews of the process have found that this movement progressed faster in the beginning as “residents with lower support needs” were initially more easily accommodated outside of institutions (Bostock and Gleeson 2004, 52). After the early stages during the 1980s and 1990s, progress of deinstitutionalisation began to slow. This has been attributed to the fact that those with higher support needs were “‘harder’ to place in community settings” (Bostock and Gleeson 2004, 52). Several researchers have also highlighted a movement which they labelled transinstitutionalisation, whereby “disabled people are moved from institutions without adequate supports and then enter other institutional settings such as shelters, prisons, nursing homes or psychiatric hospitals (Hudson 1991)” (Bostock and Gleeson 2004, 49). In 2007, the Australian Federal Government (in conjunction with the individual states) attempted to address one part of the “transinstitutional” problem, namely that of young disabled individuals living within residential aged care facilities. The Young People in Residential Aged Care (YPIRAC) program, which dedicated $244 million in funding over a five-year period, was introduced in an attempt to find more appropriate housing and care solutions for this cohort (Winkler et al. 2011). Despite the program being “one of the largest to be undertaken internationally” (Winkler et al. 2011, 320), progress at that time the program ended had not met the original expectations, with final estimates identifying only 250 of the originally targeted 689 individuals as successfully relocated over the duration of the program (Australian Institute of Health and Welfare 2012c).

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Postinstitutional Accommodation Models for Individuals with Disability in Australia

With the departure from large institutional solutions, a good number of other accommodation models have been introduced and trialed in Australia for individuals with disability. These include, but are not limited to, independent living (both private and social/public housing), group homes, coresidency models, intentional communities, key-ring developments, and sheltered villages (Bitner and Franz 2011; Scotts, Saville-Smith, and James 2007; Fisher et al. 2008; Fisher and Purcal 2010; Beer and Faulkner 2008; Weisel 2014). Among these, the group home has remained a dominant model for the housing and care of individuals with permanent lifelong disability (Bostock and Gleeson 2004; Fisher and Purcal 2010; Australian Institute of Health and Welfare 2014b). According to the Australian Institute of Health and Welfare, in 2013–2014, 17,001 people resided in 4,343 group homes throughout Australia (Australian Institute of Health and Welfare 2015). In Australia, the group home generally entails the use of small, single, “family-size” residential dwellings, situated within suburban neighbourhoods, where a rostered team of carers provide around the clock care for a small number of residents, “usually no more than 6 service users” (Australian Institute of Health and Welfare 2014b, 67). Scholars have attributed the development of and “heavy reliance” upon this model to a “rather singular attachment of policy makers to the principle of normalisation, later ‘social role valorisation,’ advocated by Nirje (1969) and Wolfensberger (1972, 1983). The realisation of normality for service users was the chief object of reform, a normality rooted in conventional notions of home and family life” (Bostock and Gleeson 2004, 44).

This “solution” to the problem of deinstitutionalisation, however, has received its fair share of criticism. For some time, scholars such as Chenoweth (2000) have labelled group homes as “mini institutions” (Chenoweth 2000, 81; Bostock and Gleeson 2004) which transpose the “same structures, routines and cultures of institutions out into the community settings where they stand in sharp contradiction to the goals of community living” (Chenoweth 2000, 81). In other words, “the large institutions have merely been turned into many smaller ones scattered throughout the community (Taylor, Bogdan, and RaciIio 1991). This process has been termed ‘transinstitutionalisation’ in the human service literature (Dear and Wolch 1987) and has resulted in the creation of many smaller ‘institutions,’ for example, group homes scattered throughout the community replacing one large central institution” (Taylor, Bogdan, and Racino 1991; Chenoweth 2000, 81).

Among the other criticisms levelled at group homes, the lack of choice afforded residents as to where, and with whom they reside (Vizel 2008; Wiesel and Habibis 2015), is one that is raised. This lack of choice not only impacts heavily on individuals’ access to social and support networks, it can also greatly affect the quality of their lived experience. Disruption from coresidents whose needs may differ greatly to their own, or who may have challenging behaviours (Vizel 2008; Wiesel and Habibis 2015), are cited as problematic in this model. Given the growing body of research that points to similar support costs for independent living as compared to group homes (Fisher and Purcal 2010; Felce et al. 2008) and improved quality of life measures for those living independently (Stancliffe and Keane 2000; Kozma, Mansell, and Beadle-Brown 2009), it is not surprising that the popularity of the group home model appears to be waning.

Current Change in the Disability Sector: The National Disability Insurance Scheme

For the disability sector in Australia, the introduction of the National Disability Insurance Scheme (NDIS), has been called “the most fundamental social policy reform since the introduction of Medicare” (Gillard and Macklin 2013).2 As the name suggests, the NDIS is a government created funding scheme, based on an insurance model, which aims to provide

2 Medicare is the national universal health care system introduced into Australia in 1975.

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tailored support to individuals with “permanent and significant” (Australian Government 2015) disability and their families. Central to this scheme is the idea that greater control is given to individuals with disability (and their families) to create personalised support packages based around their specific needs. While the scheme allocates individualised funding for the provision of care, equipment, and some home modifications, concerns have been raised that it does not cover accommodation costs (Farrar 2014; Bourke 2014; Weisel 2014). It bears noting that this was a principled decision, underpinned in part at least by a desire to prevent the re-emergence of institutional solutions. Nevertheless, critics have speculated whether this divide can be as easily drawn in reality. With the scheme still in its infancy (after some pilot sites, the program started a national rollout from July 2016), there are already some grey areas appearing in the National Disability Insurance Agency’s own documents that acknowledge problems with this delineation. For example, references can be found to instances where individuals might require an “integrated housing and support model” or where “the cost of the accommodation components exceeds a reasonable contribution for individuals” (National Disability Insurance Scheme 2014, 6). Similarly, the scheme’s coverage of home modifications sits, in some cases, in the overlapping space between care and accommodation. One commentator has highlighted that the “first wave of deinstitutionalisation had one massive failure; it failed to provide an accommodation stream for those leaving institutions. Public housing has partly picked up the pieces, but paid a huge price as a result. It is now unsustainable for both government and tenants. So the NDIS cannot look to public housing again, and unless it has a housing arm, it is hard to see how it can meet the aspirations of many it has been designed to help” (Farrar 2014, 12).

While the theoretical drivers behind a division between accommodation and care are robust, particularly in the disability sector where they work to prevent institutional solutions, the reality is less clear. Questions have been raised about how to best accommodate those that need more coordination between care and accommodation and what level of coordination is actually required. Certainly both sides of the fence appear to acknowledge that work still needs to be done in relation to housing and the NDIS. At the time of finalizing this article, one response being considered by the NDIS was payment under the NDIS to housing providers for approved Specialist Disability Accommodation (SDA). Associated with this are criteria that NDIS recipients must satisfy in order to have SDA included in their NDIS plan. It is likely that discussion will continue to be generated as the NDIS and any accommodation responses are rolled out across the country.

For the purposes of this article, what is interesting here is what is revealed when we compare and contrast this journey to date with that of the aged care sector. The following is an overview of the evolution of aged care accommodation models in Australia, derived from the second study literature review.

Brief Evolution of Residential Aged Care within Australia

The Australian residential aged care system did not, unlike some countries, evolve from other institutions. For example, the British nursing homes have been linked to the workhouses of the 1800s (Thomson 1983). The first federal government foray into residential aged care was as recent as 1954 (Gibson 1996), initially taking the form of more self-contained and hostel style accommodation with nursing home beds “initially provided only incidentally, by providing nursing care as it was required by existing residents” (Gibson 1996, 159). A rapid series of changes to the government funding structures in the 1960s saw great expansion in the sector and resulted in the number of nursing home beds doubling in less than a decade (25,535 in 1963 to 51,286 in 1972) prompting growth controls to be implemented in 1973 (McLeay Report, House of Representatives Standing Committee on Expenditure 1982, 16). Interestingly, the 1970s saw a drive, similar to that within the disability sector, to move away from institutional solutions. In 1975, the Committee of Inquiry into Aged Persons Housing highlighted that: “At present the major emphasis of Government programs is towards the provision of high-cost levels of

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institutional care ranging from aged person’s homes to nursing homes. In the Commission’s view much greater emphasis needs to be placed on maintaining aged and handicapped people comfortably in their own homes for as long as possible” (Social Welfare Commission 1975, 8).

This investigation of the system found it to be “haphazard, expensive and inadequate” and “wrong in principle,” particularly in that it treated the “aged as being somehow different from the rest of the population” (Social Welfare Commission 1975, 8). This view certainly has obvious echoes of the “normalization” theory (Wolfensberger and Nirje 1972) that drove the process of deinstitutionalisation in the disability sector. Similar theoretical underpinnings, coupled with investigation findings such as these, might have resulted in predictions that there would be a concurrent move away from institutional models for the aged care sector. Certainly, after no less than four major reviews in the early ’80s,3 further growth controls were implemented that resulted in a drop in the number of nursing home beds (the number of nursing home beds, per 1,000 people aged 70 and over, dropped from 66.5 per 1,000 to 49.5, [Australian Institute of Health and Welfare]), at the same time as there was a rise in hostel places (Gibson 1996).

By the 1990s, however, problems of quantity were not the only concerns with the residential aged care system. The pivotal “Gregory Report” (Gregory 1994) drew attention to quality issues within the large stocks of the nursing homes, built during earlier boom times, which were ageing badly and not being properly maintained. Official reports document that “nursing home buildings had, on average, declined to a poor standard of quality” with “major deficiencies in capital works” (Australian Government 2001, viii) clearly evident. Some of the most pressing problems with the built environment identified were in relation to privacy, fire, and safety standards. In 1997, the Commonwealth Aged Care Act was introduced, bringing with it large-scale sector reforms aimed at remedying the systemic quality (and funding) problems exposed. One of the most notable changes in the suite was the introduction of means tested “accommodation bonds,” to be paid by residents upon entering a residential aged care facility (RACF). This bond was to be held by the facility (with small retention amounts capped over the resident’s stay) and any interest collected was to be used by facility owners toward “improving building standards” (ANAO 2008, 31). Where a resident was unable to pay, the facility may be entitled to a “supplement (in the form of Australian Government Subsidy Payment)” (ANAO 2008, 13).

Further to this, in 2012, the Productivity Commission released the report entitled Caring for Older Australians, which scrutinised the current aged care system. Overall, the eighty-eight-page report (Productivity Commission 2011), painted a picture of a system badly placed to deal with pressing issues of increased demand, changing disease prevalence and user demographics, greater preference for independent living, workforce problems, and a dwindling supply of informal carers (Productivity Commission 2011). This report sparked yet another suite of reforms, introduced in 2015, that rely heavily on a consumer directed model (Australian Government 2012) to both fund and drive change in the sector. It also features new and clearer distinctions being drawn between the provision of funding for the care and accommodation components of residential aged care. While there are strong ideological drivers around the concept of “ageing-in-place” and community living, the current system is still heavily weighted toward residential aged care, with empirical evidence of growth, rather than abandonment, of this model (Department of Health and Ageing 2011; Australian Institute of Health and Welfare 2012b; Ageing 2012). The ratio of residential aged care beds per 1,000 people aged 70 and over have surpassed the pre-reform levels at 87 places per 1,000 (Australian Institute of Health and Welfare 2008, 1). In the 2012–13 financial year, the Australian federal government funded close to three times as many residential aged care places (226,042) as community care packages (82,668) (Australian Institute of Health and Welfare 2014a), a ratio which was matched almost exactly in fiscal terms with $9.4 billion spent on residential aged care versus $3.3 billion for

3 House of Representatives Standing Committee on Expenditure of a Sub-committee on Accommodation and Home Care for the Aged, 1980, Senate Select Committee on Private Hospitals and Nursing Homes, 1981, Joint Review of Hostel Care Subsidy Arrangements, 1984, Joint Review of Nursing Homes and Hostels, 1985 (Gibson 1996).

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community care (Australian Institute of Health and Welfare 2014a). This heavy emphasis on the institutional model does not appear to be waning either, with thousands more places being allocated yearly and in the 2015–16 financial year a further 10,940 residential places have been made available for allocation (Department of Social Services 2015). It is also interesting to note that the average size of these institutions appear to be growing. In the decade spanning 2002–2012, the total number of facilities shrank (by 8 percent) while the number of allocated places continued to grow (by 22 percent) (Australian Institute of Health and Welfare 2012a). Simply put, residential aged care facilities have been growing notably in size, with the net result of these changes being that 94 percent of all of the current facilities have twenty or more places and nearly half (48 percent) have sixty or more residents (Australian Institute of Health and Welfare 2014d).

Alternatives to Residential Aged Care Facilities in Australia

Despite the dominance of the residential aged care model in Australia, there are also a number of alternatives available. If one is to search the aged care literature for “new” or “innovative” alternatives to the traditional residential aged care facility, a concept entitled the “Green House” (Rabig et al. 2006; Nussbaumer and Rowland 2007; Cohen et al. 2016) is likely to present itself. Green Houses have been described as “small, self-contained houses for 10 or fewer elders, each with private rooms and full bathrooms and sharing family-style communal space, including hearth, dining area and full kitchen. Line staff at the level of certified nursing assistants, call Shahbazim, are ‘universal workers,’ who cook meals, do laundry, provide personal care, assist with habilitation and promote elders’ quality of life” (Rabig et al. 2006, 53).

This model bears a striking resemblance to a “group home,” however there is one key difference. Group homes, thanks to their theoretical drivers of “normalization” and “social role valorization” (Wolfensberger and Nirje 1972) are purposefully located within the community. In contrast, “Green Houses” can be found on aged care campuses, colocated with existing large facilities (Rabig et al. 2006). While this may be a seemingly subtle difference, the integration of a residence within the neighbouring community is an important ideological point of difference, and one that has been strongly promoted within the disability sector. There are other accommodation options available within the aged care sector, however what is most interesting about this one is that, at the same time that this model is being criticised as a “mini institution” (Chenoweth 2000, 81; Bostock and Gleeson 2004) in one area, it is being held up as innovative in another.

Factors Contributing to the Divide

As we have seen, despite the fact that both fields are trying to solve almost identical problems (how to house and care for individuals who are not able to fully care for themselves), the dominant accommodation models in each camp remain disparate. It is at this point that we return to the original question and interrogate in more depth, why it is that within Australia, large institutions no longer considered appropriate for the housing and care of individuals with permanent and lifelong disabilities, yet continue to be a dominant and expanding model in the aged care sector? While this article does not propose a single definitive answer to these questions (nor does it suggest that one exists), it will proceed to look in more detail at some of the factors that can be seen as contributing to this current state of affairs.

Advocacy and Human Rights

Human rights campaigning and advocacy have been powerful forces in enacting change within the disability sector. While grass roots-, community-, and state-level activism have each played important roles in the move toward securing independent living options for individuals with disability, the ratification of the Convention on the Rights of Persons with Disability (CPRD)

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(United Nations 2006), endorsed by Australia in July 2008, can also be attributed as a key driver. In particular, Article 19 (entitled “Living Independently and Being Included in the Community”) states that:

Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a. Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b. Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c. Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs. (United Nations 2006)

This article has given individuals and advocacy groups a great deal of leverage in advancing the independent living (IL) agenda within the disability sector. The fact that the right to choose “where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement” (United Nations 2006) is now protected by such an agreement is a powerful bargaining chip for those promoting IL. The Convention highlights an interesting point of intersection between the two sectors. Specifically, if a primary reason that elderly individuals might find themselves residing within residential aged care is as a result of disabling conditions (i.e. they can be classified as persons with disability), and institutional living is necessitated through a lack of viable alternatives, could this be seen as contravening the CPRD? Are they “obliged to live in a particular living arrangement” as a result of their acquired disability?

Further to this, in the state of Queensland, the Disability Services Act of 2006, Part Two, Section 28, entitled “No Single Service Provider to Exercise Control over the Life of Person with Disability,” states that: “Services should be designed and implemented to ensure that no single service provider exercises control over all or most aspects of the life of a person with a disability” (Queensland State Government 2006).

If one utilises Goffman’s definition of a “total institution” that “all aspects of life are conducted in the same place and under the same single authority,” this provision clearly discourages the creation and use of “total institutions” for individuals with disability (Goffman and Ethell 1974). One must then ask, why have institutional models been so legislated against for younger individuals with disability, yet considered acceptable for older individuals who are also disabled?

Another interesting crossover between the sectors lies in how the current disability system classifies individuals when they turn sixty-five. Critics of the recently introduced National Disability Insurance Scheme have pointed to the policy which dictates that when an individual with a permanent and lifelong disability turns sixty-five years old they are no longer covered by this scheme and are instead moved into the aged care system. Concern has been voiced as to whether individuals who turn sixty-five may find themselves losing entitlements that they have received within the disability sector. This also has the potential to force individuals who have been living independently within the community into institutions (McDonald 2013). While this

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system has not been in place long enough to fully understand what the implications will be for these individuals, the concerns raised are certainly not unfounded at this stage.

The Health Care Paradigm

In reflecting on policy positions and drivers within Australia, Gray and Kendig (2002, 5) observed that residential aged care in Australia has “evolved within a ‘health needs’ framework in which Australians generally expect the universal availability of good quality provision at public expense (as with hospitals). On the other hand, accommodation and income support have generally been conceived in a ‘welfare’ framework, for example, pensions and public housing available on the basis of both income and wealth means tests. Within this framework, the accommodation component of residential care remains problematic.”

Prior to the most recent suite of aged care reforms (Australian Government 2012), funding of the “accommodation” and “care” components within Residential Aged Care Facilities (RACFs) were largely interconnected. The latest round of aged care reforms however work toward creating more separation between the accommodation, care, and living expense components of the provision of aged care (Australian Government 2012). These changes mean that large areas of the residential aged care system are effectively being reclassified from “health” to “welfare” and the ways in which they are funded are changing accordingly. To what extent, this re-alignment impacts on aged care delivery in Australia remains to be seen, however, the separation of accommodation and care—and move away from a “health”-based model—does in principal have the potential to challenge the dominance of institutional model.

Individualised Approaches in a Universal Model

Taking an even more macro view, it’s understandable that trying to foster individualised approaches, within a health and aged care system that, in many ways, is universal, will always carry challenges. Szebehely (2013, 2) documents similar problems within the Swedish eldercare sector when she writes: “In recent years, social scientists interested in the evolution of welfare states have debated to what extent there are tensions between universalism and diversity/difference” (for an overview, see Anttonen et al. 2012; Szebehely 2013, 2).

While the degree of influence that a universal aged care system exacts may be contested, it is hard to deny altogether the complicating power that accompanies the structural forces exerted by a universal system, when trying to achieve individualised outcomes.

Lack of Alternatives

Despite the fact that ageing in place is, on paper, a well-supported idea, in order for it to be successful it is necessary to, not only provide care where required at a community level, but also ensure that the environments within which individuals are ageing are suitable and supportive. Although programs such as HACC (Home and Community Care) are in place in Australia to encourage and support individuals staying in their own homes, in order for this movement to be truly successful, adequate stocks of accessible and supportive housing need to be simultaneously made available. In the Productivity Commission’s report “Caring for Older Australians” (2011), there were several recommendations made which point to problems with our current stocks of accessible housing. The report outlined a need for residential design standards to be introduced “that meet the access and mobility needs of older people” (Productivity Commission 2011). While these recommendations were “supported in principle” (Australian Government 2012, 27) no accompanying changes or policies were created to support this happening. Other initiatives to significantly increase stocks of accessible housing, such as the “National Dialogue for Universal Housing Design” agreement made in 2010, have fallen well short of the voluntary targets initially agreed to, with recent reports stating that “the housing industry is not sufficiently incentivised to

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make real progress” and that real change is not likely without further government intervention (Australian Network for Universal Housing Design 2014).

Researchers have also noted that what little modified, and accessible, stock we have is regularly “‘lost’ to the disabled market through on-selling to non-disabled consumers” (Scotts, Saville-Smith, and James 2007, 12). Other countries have recognised this issue and worked to address it through legislation and programs such as accessible housing registers (Scotts, Saville-Smith, and James 2007). Until such time as further steps are taken to ensure that adequate stocks of accessible and affordable housing are available, we will continue to see people relocated from homes within the community, into institutional settings, due to their inability to continue to safely age in place.

Closing the Gap

As we have seen, there is an undeniably large disparity between the responses from the disability and aged care sectors surrounding the issue of institutional living in Australia. This has resulted in some interesting contradictions, for example, the Young People in Aged Care program, which is based on the premise that institutional living is not appropriate for younger people with disability, without questioning its suitability for older people with disability. At the same time, that the disability sector continues to actively discourage (and even legislate against in some areas) institutional solutions, the aged care sector shows evidence of the model growing. This growth cannot all be attributed to “consumer demand” either, as government reports point to a trend where “many, especially those not suffering from dementia, are deferring entry into residential high care until they reach greater frailty” (Productivity Commission 2011, xxix). While a number of factors have been identified here which have potentially contributed to this current state of affairs, questions of “Why?” and “How?” this schism came to be need to take second place to discussions of what should be done moving forward.

Human Rights and Advocacy

Drawing on others who have noted similar trends elsewhere in the world, the call to place a greater focus on human rights and advocacy within the aged care sector, is an idea that certainly has great potential. Szebehely (2013, 4) points out that “disability researchers analyse the oppression and exclusion of disabled people and emphasize that disabled people need human rights and control over their own lives,” however, this stands in clear contrast to eldercare research. The younger disabled population in Australia have been afforded the right to “choose their place of residence and where and with whom they live on an equal basis with others” (United Nations 2006), and further are not obliged to live in situations where a “single service provider exercises control over all or most aspects of the life of a person with a disability” (Queensland State Government 2006). Why then are we not seeing equal application of these edicts in relation to the elderly population with disability? Jönson and Larsson (2009, 69) have labelled this discrepancy “inadvertent ageism” and have cited examples of other countries (in addition to their own case of Sweden) where older “people with severe impairments do not seem to have the same rights to special support as their younger peers (cf. Kennedy and Minkler 1998; Kane and Kane 2005; Priestley 2003, 2006; Putnam 2002).” It is important to recognise that responsibility for this divide might not lie solely in the hands of policy makers. Walker and Walker (1998) drew attention to a lack of attention paid by disability activists to problems of the disabled elderly population. They observed: “Surprisingly, like the feminist movement before it, the disability movement has tended to overlook older disabled people and the social creation of disability in old age” (Oliver 1990, 1996; Walker and Walker 1998, 125–26). They continue:

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Thus, inadvertently, radical theorists and campaigners have given legitimacy to the longstanding preference on the part of policy makers to draw a line between older and younger disabled people on the grounds that disability in old age is a “natural” part of the ageing process. This distinction absolves policy makers from the responsibility of taking action to recognise the needs of older disabled people, but the theoretical or practical case for the disability movement doing so is not apparent.in considering the application of normalisation theory for older individuals with disability. (Walker and Walker 1998, 126)

Interestingly, in this work, Walker and Walker (1998, 140) suggested “extending the principle of normalisation to older people,” a proposal which almost two decades later appears to have gone largely unheeded.

Choice and Control

To advocate for greater choice and individual control, however, predicates that a range of suitable options are made readily available. It is not enough to say that individuals can have access to in-home care which affords them the opportunity to age-in-place, while ignoring the fact that the environments that they reside in may be unsuitable and even disabling in their own right. As we have seen, Australia has a shortage of accessible housing in which to accommodate the growing disabled elderly population (Ward 2016; Productivity Commission 2011). Until such time as this is addressed, individuals will continue to be forced into living arrangements that rob them of the right to “choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement” (United Nations 2007).

Knowledge Sharing

While it may seem overly simplistic to suggest knowledge sharing as a critical step on the road ahead, it may well be the most important action that can be taken. Rather than continuing to rush down a path that has already been well trod in another sector, there are clearly opportunities for the two sectors to learn from each other, avoid recreating models that have been shown to be less successful, and even skip ahead in the trajectory altogether. What this requires, however, is a shifted focus, away from the differences between them and onto their commonalities. There is a great deal of potential inherent in adopting an approach which does not make such strong distinctions between “disability care and accommodation” and “aged care and accommodation” but rather focuses on the significant amount of commonality between the two camps. Given that, at their heart, both sectors are concerned with how to accommodate (and provide care) for individuals who are not able to fully care for themselves there is certainly a great deal of room to knowledge share and hopefully address some of the inequalities touched on here. This shifted focus has the potential to promote investigation, on the best ways to find better solutions within the overlapping space between “care” and “accommodation.”

Conclusion

Despite the institutional model appearing so firmly entrenched within our aged care landscape, it is important to remind ourselves that within Australia, it only dates back to the 1950s, living memory for many of the current residential aged care facility residents (Gibson 1996). If such a pervasive and dominant model can be built over such a relatively short space of time, surely there is opportunity to build equally strong alternatives over the coming decades?

For researchers, policy makers and those on the frontline of caring in both sectors, what is needed in the coming decades is first and foremost a greater awareness that, by and large, each

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area is grappling with essentially the same issues. In addition to knowledge sharing on the local front, it is also clear that there is a need to be learning from each other on a global level. This disconnect between the disability and aged care sectors is one that has been noted in developed countries around the world (Jönson and Larsson 2009; Kröger 2009; Kane and Kane 2005) and there is a great deal of opportunity to learn from systems both similar and dissimilar to our own. A simple shift of focus away from the differences, onto the similarities between the sectors and their common problems has the potential to, as the saying goes result in a “problem shared” indeed becoming a “problem halved.” Further, while it may seem initially surprising to suggest greater advocacy and human rights campaigning is needed for our elderly population, the reality is that this may be the catalyst needed to ensure that the choice and control currently afforded younger individuals with disability is made available to all, and to ultimately see real alignment between the sectors. Given the Australian Government as far back as the 1970s deemed it “wrong in principle” that the system treated the “aged as being somehow different from the rest of the population” (Social Welfare Commission 1975, 8), it is time we recognise that real change is forty years overdue and take steps towards seeing it enacted.

Acknowledgement

The authors would like to thank Dr. Maria O’Reilly for her valuable insights into the subject and paper during its development. Receipt of Australian Postgraduate Award funding for this research is also acknowledged by the author. Further, the research was in part informed by a review of the outcome of a project by a team of researchers including the authors and funded by the National Disability Research and Development Agenda, jointly implemented by disability representatives from Commonwealth, State and Territory governments (Franz et al. 2014). The information and views contained in this research are not intended as a statement of Australian Government, or any jurisdictional policy, and do not necessarily, or at all, reflect the views held by the Australian Government or jurisdictional government departments.

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ABOUT THE AUTHORS

Grace Bitner: PhD Candidate, School of Design, Queensland University of Technology, Brisbane, Queensland, Australia

Jill Franz: Professor, School of Design, Queensland University of Technology, Brisbane, Queensland, Australia

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The International Journal of Aging and Society provides an international forum for the discussion of a rapidly growing segment of the population in developed countries as well as in developing countries. Contributions range from broad theoretical and global policy explorations to detailed studies of the specific human physiological, health, economic, and socia l dynamics of aging in today’s global society. The journal is a focal point for interdisciplinary research involving psychology, neuroscience, economics, sociology, anthropology, demography, nursing, biology, medicine, public health, epidemiology, gerontology, pharmacology, dentistry, health behavior and health education, “third age” education, management, marketing, and communications. Articles cover a range from big picture questions of public policy to the fine detail of research and practice-based discussion.

The International Journal of Aging and Society is a peer-reviewed, scholarly journal.

ISSN 2160-1909