Lived experiences of housing and community infrastructure among Indigenous people with disability

This Final Report presents the findings of research exploring the interconnections between housing, community infrastructure and quality of life ('lived experience') for Indigenous people living with disability. Two key factors have provided the impetus for this study. First, the relationship between appropriate housing, good health, wellbeing and quality of life is now well established (Baker, Mason et al. 2014; Howden-Chapman and Carroll 2004; OECD 2011; NPDCC 2009). Yet there remain many individuals and groups who face multiple barriers to accessing housing that meets their needs and is appropriate and sustainable in terms of affordability, accessibility, safety, security and housing form. Indigenous people with disability are one such group, yet we know little about their housing experiences, aspirations and needs. Second, the development and rollout of the National Disability Insurance Scheme (NDIS) has focused attention nationally on the needs of people with disability. A watershed in social and disability policy, the NDIS offers real potential to transform the living circumstances of many people. It will provide eligible participants with assistance to access more appropriate, timely and consistent support services, and exercise choice and control over their lives. However, while the scheme's mandate is clear, there are gaps in the structures and processes and it is not yet fully implemented at this time. We know little, for example, about how the NDIS will be applied, resourced and supported across Australia's vast network of rural, regional and remote communities, where service delivery is particularly challenging. This study used a research approach which allowed the creation of narratives of 'lived experiences' of housing and community infrastructure in three case study communities: Yalata and Point Pearce in South Australia, and Greater Geelong in Victoria. This approach allowed the voices of Indigenous people with disability to be heard. This data was recorded alongside baseline data on the quality, quantity and condition of housing and community infrastructure. Assessments of these infrastructures were made against key disability-related requirements, standards and guidelines in operation for such infrastructure-for example: the National Construction Code (NCC) (ABCB 2015a; 2015b) and relevant Australian standards; the National Indigenous housing guide (NIHG) (FaCSIA 2007); and the National Indigenous infrastructure guide (NIIG) (FaHCSIA 2010). The three case study areas were selected as examples of remote (Yalata), rural (Point Pearce) and urban (Geelong) settings, and were also chosen as they are all within the stage one NDIS launch regions. A range of stakeholders were interviewed in order to garner necessary data and perspectives, including Indigenous people with disability in each community, their families and carers, other community members, health and housing workers and other service providers. To provide a backdrop for the study, the prevalence of disability at the three case study locations was investigated. This found that poor health and disability are major issues facing the Indigenous populations in these areas. Moreover, government data has not accurately captured the prevalence of impairment and disability in the Aboriginal population, nor the level of need for assistance. It also does not capture the complexity of disabling impairments or health conditions. Co-morbidities are common among the Indigenous populations studied. The study found that people were often hesitant to access disability services outside their family networks, as this tended to result in interference in their life and a loss of personal control. There were contrasts observed in the living circumstances of Indigenous people with disability in the remote, rural and urban locations. In remote Yalata, housing was in high demand and difficult to access. It was often of substandard condition, overcrowded and poorly maintained. In the urban setting (Geelong) we also found that people with disability had difficulty accessing housing, and when they did the housing was often substandard, inappropriate or unsuitable due to a lack of repairs and maintenance or suitable modifications. In Point Pearce, the rural setting, housing was much easier to access, and due to a renovation program coincidentally occurring during the research period, the housing was of reasonable quality. The research highlights the interconnections between housing, community infrastructure and quality of life. We encountered people separated from their family and country as a result of their disability; people who lacked basic amenities such as a place to cook or sleep; people who were trapped in their houses because of the failure of an agency to complete simple house modifications or make residents aware of the range and types of modifications available and the process for accessing them; and people whose housing circumstances did not, and could not, meet their health or disability needs. Other people were homeless and cycled through a series of different (and often dangerous) living circumstances due to the nature of their disability, including psychosocial conditions. People with certain disabilities fared very poorly in all locations. In particular, people with cognitive and/or psychosocial disability had great difficulties accessing safe and appropriate housing, with impacts on the wellbeing at the individual, family and community levels (see Wright, Zeeman et al. 2016 and Zeeman, Whitty et al. 2016 for a useful recent general discussion around these issues). At the remote location we found that Indigenous people with disability often had to move to access housing, health services or supported living arrangements. When people were required to move, they were greatly affected by their dislocation. Communities wanted to keep people with disability living within the community whenever they could. People with disability in Yalata saw family as responsible for their care. Remarkably, at the rural location, we found that some people with disability had moved back to the community to access housing and health services. The rural community had become a place of refuge. In the urban setting, there were indications that people had access to a full range of requisite services however discussions with study participants in Geelong found that some were faring very poorly in terms of accessing housing appropriate to their physical, social and cultural needs. The majority of houses examined for this study did not meet accessibility and visitability requirements for residents and guests. This was a point highlighted repeatedly by the service providers, community members and residents interviewed. In all locations there was poor adherence to existing housing guidelines and, particularly, poor adherence to non-mandatory requirements around disability access. Accordingly, we have developed a series of recommendations from the research (summarised below), headlined by three related policy recommendations.