What prevents people with disabilities from having their right to housing support fulfilled? The article identifies the facilitators and barriers to adequate housing support in Australia for people who need 24-hour support by applying a human rights framework to analyze Australian disability housing support policies. The article provides an overview of approaches to housing support arrangements. It outlines the primary goals of disability housing support from disability theory and policy as encompassing human rights, quality of life, independent living and cost effectiveness. The research provides insight into the right of people with disabilities to housing support in a changing policy context and it identifies seven key facilitators and barriers to fulfilling the right to disability housing support: (1) legislation, agreements and regulations; (2) funding and demand management; (3) interagency coordination; (4) range, flexibility and choice of housing support; (5) staffing quality; (6) informal carers; and (7) discrimination.
Introduction
Disability policy in most countries does not include an entitlement to disability housing support. In this context, many people with disabilities do not have their right to housing fulfilled, which in turn prevents them from fully participating in their communities. This research analyses Australian disability housing support policies using a human rights framework to identify the key facilitators and barriers to fulfilling a right to adequate housing support for people who need 24-hour support.
Since the 1960s, and particularly since the 1980s, disability concepts and policies have shifted from a paternalistic welfare approach to an acknowledgment that people with disabilities have full and equal rights (Parker, 2007). These shifts spurred a deinstitutionalization movement across the western world, where large hospital-like institutions were closed, and the former residents moved into smaller living arrangements in the community such as group homes and cluster housing (Young et al, 1998). Previously, large institutions were the primary form of housing support with efforts underpinned by notions of pity and charity, and embodying a medicalized notion of disability. However, contemporary approaches to disability housing support demonstrate the positive effects for people with disabilities of living in the community rather than in institutional care (e.g. Bleasdale, 2006; Bostock et al, 2001; Stancliffe & Lakin, 2005). These changes represent a paradigm shift from professional, controlled services in segregated institutions to services that underpin self-determination and community participation (Laragy, 2002). Such arrangements can offer better personal support and housing options, as well as provide a greater opportunity for people with disabilities to participate in their communities (Epstein-Frisch et al, 2006).
While many disability policies and programs have been reconceptualized to include human rights principles, limited access to housing support remains a key barrier to fulfilling basic rights for some people with disabilities (Parker, 2006). In Australia, this is evident in the high numbers of young people with disabilities still living in aged care facilities (FaHCSIA, 2007), the large unmet demand for housing support (AIHW, 2003; AIID, 2006), and a federal policy system that restricts portability of disability housing support between states and territories (WWDA, 2005).
This limited access to housing support creates further barriers to equality for people with disabilities. While deinstitutionalization and subsequent policy trends across advanced western welfare states remain a critical step in ensuring parity of participation, turning the tide on disability rights requires newer approaches to housing support and a commitment to fully implementing the policies. This has been recognized in recent policy discourse, when governments acknowledge that current approaches to disability housing support are insufficient to enable the equal participation of people with disabilities. Key critique centers on a lack of flexibility, non-individualized service provision and cost. Internationally, people with disabilities, advocacy groups, key non-government and government stakeholders are searching for ways to improve housing support arrangements so that the arrangements better respond to the right of people with disabilities to live in housing settings of their choice, receive their preferred support to live there and lead full and independent lives.
The national public and policy recognition of the need for more flexible approaches to housing support is also reflected internationally under Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which defines independent living as the right of all persons with disabilities to live in the community. The CRPD says that people with disabilities should have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others, and not be obliged to live in a particular living arrangement. Furthermore, people with disabilities should have access to a range of in-home, residential and other community support services, including the personal assistance necessary to support them to live and be included in their community, and to prevent their isolation or segregation from the community (United Nations, 2008).
An important policy trend has been the move towards individualization of services, and advanced industrialized countries have been examining different methods for such provision, including direct funding mechanisms and individualized case management. However, the gap between grand policy statements about housing support and actual implementation is vast. Have these policy shifts been effective in promoting and ensuring human rights goals for people with disabilities? What are the main facilitators and barriers to housing support to achieve these rights goals? To address these questions this article: outlines the goals of disability housing support as identified in disability theory and policy; provides an overview of Australian approaches to 24-hour disability housing support; and analyses seven key facilitators and barriers to achieving these goals.
The Disability Policy and Research Working Group of the National Disability Administrators of federal, state and territory governments in Australia commissioned a University of New South Wales Consortium to research the effectiveness of supported living in relation to shared housing for people with disabilities who need 24-hour support (Fisher et al, 2008). Research methods included a national and international literature review; interviews with people with disabilities (n=6), families (n=4) and a rural service provider (n=1); and interviews with national, state and territory officials (n=9). We used the data to develop a framework for assessing the effectiveness of new approaches to housing support, and applied the framework to six case studies. Both the effectiveness framework and case study analysis are discussed elsewhere (Fisher, Parker & Purcal, 2009). Further data for the case studies were collected from provider documentation, questionnaires and interviews with service managers (n=6) and clients (n=12) (Fisher and Parker, 2007). The research aimed to build on existing knowledge, and increase understanding about housing support for people with disabilities. The objective was to improve policy implementation for people with disabilities. The facilitators and barriers to implementing housing support policies to meet people's rights are analyzed in this article.
Goals of Disability Housing Support Policy
The goals of housing support policies evident from disability theory and policy are based on three principles. First, like other citizens, people with disabilities have a right to equal choice, freedom and control over their living arrangements, including where they live, who they live with and who provides support to them. For most people with disabilities this means informal support from family and friends while living in the community, supplemented with formal housing support where necessary. Second, governments are trying to reorient disability housing support policy towards prevention and early intervention and away from crisis responses or rationing based on relative need. The implication is that governments are aiming for policies that are responsive to people's changing support needs and preferences in the community context in which they live or in which they would prefer to live. Third, governments are moving towards individualized service provision, consistent with the other two principles. This approach has implications for provision of all forms of housing support, including access to general and specialist disability housing support. Service planning becomes based on what is most appropriate for a person's changing support needs and personal preferences.
In the context of these principles, the aim of disability housing support policy is to achieve four policy goals.
- Human rights — Fulfilling the right to housing support facilitates participation in wider political, social, economic and cultural spheres of society (Parker, 2007a; United Nations, 1966). A purpose of housing support policies is to assist people with disabilities to lead full and independent lives (Bigby, 2004; Disability Rights Commission, UK [DRC], 2006). Human rights form the conceptual framework for the other three goals of disability housing support, which are not independent of this first goal.
- Quality of life — Improving quality of life is a goal of all disability policy as is recognized under the Australian Commonwealth Disability Services Act 1986 (Felce 2000). When compared to institutions, community-based housing can offer more opportunities for good quality of life, including community access, self-determination, wellbeing, social networks and self-care (Emerson et al, 2001; Howe et al, 1998; Kim et al, 2001; Stancliffe & Keane 2000; Young, 2006).
- Independent living — Facilitating independent living choices promotes the right of people with disabilities to live in the community, to choose their place of residence, where and with whom they live and without obligation to live in a particular housing arrangement. To meet their individual needs and preferences they should have access 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 (Bigby, 2004; Burchard 1991; United Nations, 2008;).
- Cost effectiveness — Choosing cost effective policies from the perspective of the person using the housing support and the agencies organizing them aims to maximize affordability and outcomes. Researchers disagree about which approaches to housing support are the most cost effective. Some studies find a correlation between costs and benefits in relation to the type of housing arrangement (Emerson et al, 2004), whereas other studies have found no significant difference in the cost of the different methods of support (i.e. housing support and traditional residential services) (Epstein-Frisch et al, 2006; Stancliffe & Lakin, 2005).
Governments face many challenges in implementing and achieving these goals. While policy discourse embodies a rights-based approach to disability housing support, policy practices are constrained through wider socio-cultural and political-economic forces. The research applied these four goals to analyze the way current policy is implemented. The findings about the current policies and the facilitators and barriers to fulfilling the right of people with disabilities to housing support are presented in the remainder of the article.
Current Disability Housing Support Arrangements
Housing support includes the place and the support to live in the place. Types of housing support can include general housing support for any members of the public, including people with disabilities; specialist housing support for people with disabilities; and market arrangements, such as rental housing, home ownership and privately paid carers. The trend in disability housing settings is towards minimizing the size of the housing, both physically and in relation to the number of people living together. The support to live in the housing can vary by type of support and who organizes, funds, manages the funds and provides the support. The trend in Australian disability housing support is towards individualized funding, planning and service provision, or "person-centered" service. This approach enables people to choose from a range of service types and settings, and different funding arrangements (Bigby & Fyffe, 2009). Many approaches to housing support, both residential and home-based, provide case management and individually planned support with flexible services as necessary for the changing needs of the person supported. The people who have had access to these new approaches have begun to benefit from greater opportunities for independent community living and access to public and private housing markets.
Across Australia, a range of options for people with disabilities who require housing support are available. These include public housing; community housing; crisis housing; home purchase assistance; and private rental assistance (Productivity Commission, 2007). The National Disability Agreement (NDA) (previously the Commonwealth State and Territory Disability Agreement - CSTDA) provides the national framework for the delivery, funding and development of specialist disability services. Analysis of disability housing support arrangements in Australia has shown a steady growth in these funded residential services; a slow but consistent decline in the proportion of people housed in large residential settings; a gradual increase in the number of people in community group homes; and a more rapid growth in home-based drop in services to support semi-independent housing (Stancliffe, 2002). These trends are in keeping with current trends in OECD countries. They have had a marked effect on disability services and the people receiving them — in 2004/2005, 83.3 per cent of people with housing support received community housing and care services (Productivity Commission, 2007).
However, the supply of housing support is inadequate and continues to include institutional support. The Australian Institute of Health and Welfare (AIHW) estimates that in 2005 nearly 23,300 people needed housing and respite services who did not receive them or did not receive them at the necessary level (AIHW, 2007). While all states and territories have begun to consider how to take a more individual approach to housing support (Fisher et al, 2010), actual implementation varies widely between locations and some states have indefinite plans to continue their remaining institutional support (e.g. DADHC, 2009).
One of the greatest challenges for governments implementing housing support policy is how to meet the needs of people who require 24-hour support. Recent developments in disability service provision in Australia has seen new approaches to this type of housing support for people who would otherwise receive support in formal support settings, such as institutions and group homes. Many developments are focused on reducing the need for 24-hour support while providing a safe environment with as much or as little support as necessary. The approaches reflect the human rights principles (as outlined the CRPD) of individualization of support, choice, independence and community living. Examples of new disability specific housing support include self contained apartments with common spaces and shared support available as needed; housing cooperatives purpose built for people to live alone or with carers; and subsidized housing, leased by community housing organizations, with support available from other tenants who receive subsidized rent in return (Fisher et al, 2008). In addition to housing support designed specifically for people with disabilities, policy lessons can also be drawn from flexible housing support for anyone with complex needs, including older people and people previously institutionalized for other reasons, including within the criminal justice and mental health systems (e.g. Willis, 2004; Muir et al, 2007).
Current approaches to disability housing support in Australia focus on small residential settings, most commonly staffed group homes, and home-based support service provision. Many approaches, both residential and home-based, provide case management and individually planned support services that are responsive to the changing needs of the person supported. In relation to housing settings, the trend is towards minimizing the number of people living together. This, in conjunction with the emphasis on community integration, exemplifies the trend towards independent community living and general housing.
Facilitators and Barriers
The research identified seven facilitators and barriers to achieving the goals of disability housing support policy.
(1) Legislation, Agreements and Regulations
The first key area is the financial and legislative arrangements between governments, which determine the conditions and funding available for disability housing support policy planning and implementation. The Disability Services Act provides standards and key performance indicators for organizations receiving government funding for providing disability services. Since the introduction of the CSTDA, now the NDA, the coordination between different levels of government and service provision has improved. The NDA more explicitly outlines consumer participation and choice through its emphasis on person-centered services (AIHW, 2009). Remaining problems include questions about the success and equity of the funding arrangements; coordination, inefficiencies and gaps from the multiple services and funding sources (AHURI, 2002; Bridge et al, 2002; DHS, 2007; SCCA, 2007).
An approach, taken in some Australian states and the United Kingdom, is to develop a planning response to key issues facing housing support (Innes, 2006; NCIL, 2006; SCCA, 2007). Some housing support arrangements are also affected by the Commonwealth State Housing Agreement (CSHA), which provides funding to assist people whose needs for appropriate housing cannot be met in the private market. The CSHA includes steps to reform the housing assistance system (AHURI, 2002a). Remaining problems are the continuing growth in unmet housing need; the impact of targeting in the social housing system; and rundown and inappropriate housing stock (AHURI, 2002a). Governments are developing a national housing policy framework to integrate and coordinate housing policy and other social policy objectives across all levels of government (AHURI, 2002). The lack of outcome information is a barrier to policy planning. Currently, Australia does not have a comprehensive outcomes framework which operates nationally or state wide to measure the effectiveness of housing support. Developing an outcomes framework is an area that requires further evidence-based research to prioritize service funding and respond to demand (DFCS, 2007).
Some state departments have noted that while building regulations protect quality standards, they can also act as a barrier to accessible and affordable housing stock. This is particularly the case for residential facilities, which have complex codes. Statutory regulations can have an adverse impact on housing, including in relation to the development of new housing and maintaining current housing arrangements for ageing residents (Innes, 2006). For example, in Victoria, building regulations about safety conditions can prevent people with disabilities who have paid housing support from organizing their own homes like other members of the public (DHS, 2007).
Facilitative regulations include building standards to improve universal accessibility, which are increasingly supported because of an ageing population. Availability of accessible housing is important. The United Nations in a special report on housing in Australia has commented on the lack of suitable and affordable housing for people with disabilities. The report recommended that all new private and public construction should have accessible design arrangements, which if included during the design phase, could avoid the cost of later modifications, and could also benefit other members of society, such as older people and young families (Kothari, 2006).
(2) Funding and Demand Management
The service system does not meet the demand for either affordable housing or specialist disability services. Resource facilitators and barriers include the implications of the competition for support funding; prioritizing prevention or critical care; the availability of social housing and other housing stock; and the costs of changing needs. One funding problem is the high unmet demand for affordable and accessible housing and housing support (Bleasdale, 2006; Foundation for People with Learning Disabilities, 2001; McNamara, 2001; Sachs & Associates, 1991; Department of Health, UK, 2003). Governments also acknowledge the difficulty in addressing 'under-met' need (AIHW, 2007b). The urgency of meeting critical demand has had the effect of reducing the choices available. The rationing of housing support services mitigates against people making lifestyle choices and decisions, either because the hours of support they receive are insufficient or the required support is too costly (AIHW, 2007b). Most available options are locked into current arrangements, leaving little opportunity for service providers to shift resources to maximize choice and flexibility. Funding of services is often prioritized for people with complex, high and/or critical levels of need, which results in service gaps for people with other support needs.
Due to the high level of unmet demand, housing support is often only provided in response to a crisis. In these circumstances, funding and service provision is often based on available budget rather than individual need (NCIL, 2006; Ozanne, 2001; Simons, 1998). One of the barriers to housing support is the tight housing market, with a shortage of affordable housing and high demand for social housing. According to AHURI (2002), the number of public housing units has decreased, while the population and number of people requiring such housing have increased. At the same time, the lack of affordable private rental units keeps people with disabilities out of the private market (Bleasdale, 2006; National Community Housing Forum, 2004). In addition, inappropriate housing stock that is located away from public transport and employment opportunities is still used. This makes it difficult for providers to integrate services.
(3) Interagency Coordination
The third systemic facilitator and barrier is the effectiveness of interagency coordination between government agencies and the numerous service providers in the sector, either through case management, service system or policy coordination mechanisms. Effective coordination of housing support is necessary for a number of reasons. People with disabilities have needs that are not neatly packaged within the systems and support associated with or offered by only one government agency or service provider. Bigby (2006) found that housing providers and support service providers did not adequately share information about their service provision to people with disabilities, which reduced the suitability of the housing (also Sachs & Associates, 1991). Agencies have difficulties assigning responsibility for people with a multiple diagnosis (e.g. mental health, drug or alcohol and disability) (Disability Services Queensland, 2007). Bridge et al (2002) argue that linkages are still primarily based on informal cooperative efforts that vary in their effectiveness. Bostock and Gleeson (2004) suggest that the lack of coordination between housing support services often results in disability agencies focusing more on the support requirements of clients to the detriment of housing requirements and mainstream housing options (Bleasdale, 2006).
One of the key policy questions is whether to separate or integrate housing and support. Historically, residential care was a single package of housing and housing support. In contrast, community care typically separates them (Oldman, 2000). Reynolds and O'Brien (2002) suggest that if a range of approaches to link housing and support services are available, this can respond to people's needs. Bigby (2006) argues that separation is only successful where organizations coordinate and communicate with each other. The preferences of people with disabilities for integrated or separated housing and housing support services are not clear from the research for this project. Funded coordination is one way to bridge the two approaches.
Other human services sectors also play a key role, as people with disabilities who access other support systems (e.g. mental health, health or criminal justice) often receive types of support not traditionally offered by the disability service system. The federal government (FaHCSIA, 2007) noted the gaps in coordination between departments, for example in relation to juvenile justice, which results in a lack of proper rehabilitation and the risk that a young person ends up with higher, more complex needs. Memoranda of understanding between agencies are a formal response to this need. The intersection between service streams can also have consequences for people living in housing support services. One example is in relation to housing support packages that do not include funding for community participation or transitions, such as from institutional care and age-related services (18 and 65 years). In contrast, good transitions require coordination between the formal and informal support services, at least temporary case management and the associated costs of temporary additional support to manage changes.
(4) Range, Flexibility and Choice of Housing Support
The fourth facilitator and barrier is the responsiveness of housing support policies to people's choices about their housing support arrangements. This includes the type of housing; the location and co-location; who they live with; the condition and quality of the housing; the appropriateness to the person's support needs; and direct payments and individualized service provision. Government officials commonly agreed that availability, flexibility and diversity of affordable and purpose appropriate housing options was important for successful policy implementation. The number of people in any housing arrangement (particularly in group homes) is a contributing factor to quality and satisfaction. Stancliffe and Keane (2000) in a study of semi-independent living arrangements found that participants in smaller (staff-to-user ratio) arrangements experienced better outcomes. Bigby (2000) describes quality housing support as including: a house which is appropriate in its design; affordable and secure tenure; and access to formal or informal support that meets the person's needs and circumstances.
More recently, governments have begun to re-introduce cluster housing to integrate people into the community. However, researchers have criticized clustered community housing as providing an overall poorer quality of life when compared to dispersed housing. The European Intellectual Disability Research Network (EIDRN) (2003) have argued that family and community ties continue to be disrupted even with more progressive cluster community housing arrangements, which are reminiscent of institutional services. Epstein-Frisch et al (2006) suggest that a risk of cluster housing it that it has many of the features of institutional living, including: a whole of life approach to service delivery; a custodial and impersonal nature of care; segregation from the community; inability to provide a home-like environment; and difficulty meeting the physical, emotional, social and skill development needs of people grouped together (also Emerson et al, 2000).
One of the main barriers to goals of choice and control, as noted by people using services is sharing housing with other people not necessarily by choice (either sharing at all, or sharing with particular people). The policy direction in Australia is to offer support services based on personal requirements, including individual support packages so that the person can access their preferred housing support. Internationally, this includes individualized funding (Bostock & Gleeson, 2004; Lord & Hutchinson, 2003). Australian state governments are also experimenting with individualized funding arrangements, such as Western Australia, Victoria and NSW (e.g. Fisher & Campbell-McLean, 2008). Individualized funding arrangements can include: direct payments, indirect payments and funding held by organizations. Services to be purchased include personal support, domestic services and social services. The implementation of such arrangements can be through service brokers, personal agents and voucher schemes that provide assistance with budgeting, service selection, payment management and accountability. Benefits include responding to personal preferences and needs, lowering administrative costs, increased competition, and employment opportunities (SCCA, 2007). Risks arise in the operationalization of the system, including: tax implications; accountability over funds; and the level of funding to meet the person's needs. In the UK, successful implementation involves training policies, mandatory duties, performance indicators and duty of care targets (Priestley et al, 2006).
As discussed earlier in the article, housing support that offers flexibility and choice facilitates quality of life goals for people with disabilities. Several participants in the research emphasized that flexibility of support was important to people on a range of levels: for example, being able to determine on which day of the week they shop (when needing staff support to do so); and organizing hours of support to supplement the caring role a family filled during part of the week. Practices, funding and approaches to service delivery are facilitators or barriers to choice experienced by many people using services and trying to access them. Although disability legislation principles include diversity, choice and flexibility, Australian government departments find it difficult to implement them. As a consequence, some officials and providers consider that parts of the current disability housing support policies are too inflexible and prevent people making real choices (MacArthur, 2003; McNamara, 2001). For example, if a person has current housing, even if not ideal, then their need for other disability housing support is given lower priority (DHS, 2007; DHHS, Tasmania, 2007).
(5) Staffing Quality
The fifth facilitator and barrier is quality staffing in housing support, including availability, training, service approach and managerial support in the employing organization. Staffing is well established as a key determinant to the success of service quality and outcomes for people with disabilities in housing support arrangements. The literature demonstrates that for people with high support needs, three key factors are important: (i) available activity for all — which involves moving from the 'hotel' model to resident participation; (ii) available personal support including well developed method for staff/resident deployment and activity planning; and (iii) effective assistance to help people who lack skills to accomplish activity successfully (Epstein-Frisch et al, 2006). The importance of quality staffing is echoed by people with disabilities and their family members. It is necessary to have experienced well-trained staff who have a positive vision of what is possible for the person. Another key issue with staffing is the managerial or organizational processes of service provision. Bigby (2006) suggests that often the primary focus is on day-to-day care by staff and managers, with little weight given to planning and vision for people's quality of life.
(6) Informal Carers
The sixth facilitator and barrier is support for informal carers. Most people with disability housing support needs are only supported by their family and friends because they are unable to access the very limited government housing support or chose not to do so. For people who do use government funded support, robust informal support (practical and emotional) from both family and friends is considered to be a key facilitator of a good housing support experience. This sort of support is particularly helpful in ensuring the person is viewed as more than a 'client' or 'resident'. While many adults are content to remain in the family home, often this choice is because of a lack of viable alternatives. EIDRN (2003) note that, although family care may appear to be a cheaper and more preferred option, the need to accurately estimate costs of family care remains when determining equity and measuring the effectiveness and efficiency of public services. AHURI (2002) suggest that while some community care services are available to assist informal carers, often financial restraints often limit access to this assistance, which puts long-term informal carers at risk of financial hardship.
A key barrier is the interface between formal and informal support. If a person has a well developed, effective network of support, their priority of access to more formal support is limited, even though the level of funding or support that is required to sustain such arrangements is often relatively low (Disability Services Queensland, 2007). Lack of housing options places an unacceptable demand on many families and informal carers, restricting choice and opportunities for developing an independent life for many people with disabilities. The degree and type of support needed is a major determinant of quality of life for the families and carers of people with disabilities. Where families have control over respite and personal assistance services, they experience an increase in service satisfaction and community participation, as well as reduced turnover in the workers supporting their family member with a disability (AIID, 2006). Similarly, where families have an abundance of social, emotional and material resources, the stress of caregiving can be minimized. However, very few families have access to such levels of support.
While home-based supported living can improve the quality of life of a person with a disability, it can have a negative impact on the quality of life of the caregivers or family members. Primary carers are at considerable risk of high stress, clinical depression and abnormally low subjective quality of life (Cummins, 2001). The needs of people with an intellectual disability and their informal carers can conflict, which is especially problematic for ageing carers who have care needs of their own (Ozanne, 2001). Furthermore, informal care may actually negatively affect the independence and autonomy of people with disabilities, particularly people with an intellectual disability (Burchard et al, 1991; Buys and Tedman-Jones, 2004).
(7) Discrimination
Discrimination on the grounds of gender, culture, language and Indigenity is an additional barrier for some people with disabilities. Some housing support services have practices to address this risk. Socio-economic barriers and stigma about particular disabilities are also a barrier to access to housing support for independent living. A key issue in the provision of housing services to diverse groups of people with disabilities is ensuring support is culturally sensitive. This is sometimes difficult to achieve, particularly because of the relationship between the housing setting and access to culturally specific community support, such as social networks and cultural facilities (FaHCSIA, 2007). In the Northern Territory, a high percentage of Aboriginal people living in remote areas do not have access to housing support, and are instead relocated to the urban areas — often hours away from their family and friends and in a white-dominated urban setting. The cultural mix of staff can also be problematic, with some service providers having little flexibility or knowledge about cultural issues (DHCS, 2007). In a study undertaken by Carlson and Kooten (2001), five main factors were found to affect the level of support received by people from a culturally and linguistically diverse (CALD) background: isolation, cultural beliefs and cultural differences; language difficulties; inter-sectoral links; and access. Strategies to avoid the risk of discrimination include: service staff awareness about cultural needs; where possible, support is tailored to the cultural norms and beliefs of the family; bi-lingual staff; liaison between organizations, including memorandums of understanding; and dissemination of all information about the support in multiple languages and distributed through as many communities as possible. Improved data collection based on ethnic and linguistic factors can also lead to better understanding of the needs of people in diverse communities (Carlson and Hutchinson, 2001). New South Wales has a CALD unit to improve understanding about the issues faced by people with disabilities from diverse backgrounds across the State (DADHC, 2007).
In addition to cultural barriers, a number of socio-economic barriers prevent some people with disabilities from accessing appropriate housing support, such as stigma and high costs of housing. Despite the shift towards community-based housing, some communities are less welcoming and accepting of people with significant disability, which results in pressure to return to congregate environments (DSQ, 2007). Lack of acceptance of the potential capacities of people with an intellectual disability can also act as a barrier. For example, some formal and informal carers can disregard and dismiss requests for support with semi-autonomous activities or in enabling autonomous activities to occur (Buys & Tedman-Jones, 2004)
Conclusion
The identification of these seven facilitators and barriers to implementing effective housing support illustrates the complex reasons why people with disabilities who need 24-hour support do not experience a policy environment that fulfills their right to disability housing support. However, Australian policy trends towards individualized approaches and emphasis on person-centered approaches seem to offer pathways towards achieving the policy goals. Rights-based housing support cannot flourish when the policy structures and processes do not facilitate the implementation of that commitment. People with disabilities are entitled to expect support from all relevant government sectors, yet the coordination between the sectors currently seems to rely on informal arrangements or mechanisms to prioritize rationed support. Positive trends that broaden the range of general and specialist disability housing support are contributing to more flexibility within the system. It is in this area that the recognition that people with disabilities have unfulfilled rights is most clearly illustrated. However, the amount of government support available limits the number of people able to take advantage to the new disability housing options and mitigates against early intervention to prevent crises.
The greatest determinant of quality housing support is the training and management of staff. Yet, for many people with disabilities their rights are hampered by additional discrimination about their culture, language, gender or socioeconomic situation. Trends towards training to improve the cultural competence of staff seek to address this barrier to their rights. Recent government commitment to housing support that takes an individualized approach is key to facilitating active empowerment in people's disability housing choices. However, such approaches are difficult to implement because they require a sophisticated approach to professionally supporting people with disabilities to participate in their decision making. Finally, the emerging disability housing policy trends recognize support of family and carers of people with disabilities as key to a mixed social welfare state, where the role of formal and informal support is the usual experience of most people in our communities.
No one approach to disability housing support is likely to be sufficient to meet the rights of all people with disabilities in this policy context. The people and organizations involved in housing support have appropriately responded with multiple approaches to housing support. Trends in Australian housing support policy for people with disabilities are consistent with international policy changes. Governments are grappling with questions of how to provide sufficient levels and types of support for the needs of people with disabilities in a cost effective manner.
It is evident, then, that future housing support for people with disabilities should, irrespective of the housing setting or level of support needed, be focused on an individual approach to housing support. This can facilitate mobility, flexibility as needs change and options for integrating informal, formal and general support. The research shows this approach is also most likely to meet the goals of disability housing support policy in terms of human rights, quality of life, independent living and cost effectiveness.
Thank you to the University of New South Wales Consortium — Karen R. Fisher, Sarah Parker, Christiane Purcal, Ofir Thaler, Peter Abelson, Phillip French, Edwina Pickering, Sally Robinson and Megan Griffiths; the people who participated in the interviews; Reference Group members; and people who commented on the article. Research funding was from the Disability Policy and Research Working Group of the National Disability Administrators, Australian governments. Ethics approval was from University of New South Wales.
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