Governments and communities in Nova Scotia and around the world are struggling to meet the housing and independent living needs of people with Autism Spectrum Disorder (ASD). Pressure from self-advocates, families, caregivers, and service providers points to a significant unmet demand for resources to allow thousands of young adults with ASD to establish and maintain households of their own. Given the high prevalence of ASD, and the knock-on effects of inappropriate housing (difficulties with employment, health problems, social isolation), this is a costly problem for families and society.
However, there is great need for better data to inform decision-making and strategic planning around housing for people with ASD. Currently, there is only a patchwork of administrative data (waitlists, service logs) quantifying the supply of and demand for housing and related supports in Nova Scotia. Moreover, stakeholders in the ASD community work within a “person-centred” framework that demands people with ASD be included in the conversations that affect their interests—hence the slogan “nothing about us without us,” popular in the disability rights arena. Thus, better administrative data alone could not provide the foundation for a housing strategy. Instead, this partnership combines AutismNS’s expertise and credibility in the Autism community and provincial policy with Dr. Karen Foster’s expertise in survey methods, inequalities, Atlantic Canadian society and policy.
The project, funded by a SSHRC Partnership Engage grant, will i) survey Nova Scotia residents with ASD and their families to develop a better understanding of what types of housing and supports are most needed and desired, and ii) conduct a scan of extant supported housing options and policies. The research aims to inform AutismNS’s strategic planning and lobbying (and therefore government policy), and the ASD community’s understanding of its resources and challenges, as well as provide insights for other jurisdictions facing the same crunch. Furthermore, the research process and findings will contribute to academic knowledge about how to tailor data collection to populations and participants with ASD.