Falling Through the Cracks? An Exploration of the Conditions of Care Experienced by Younger Residents Living in Long-Term Care Facilities

This dissertation examines the situation of younger residents living in long-term care facilities (LTCFs) in Ontario in the decades leading up to the COVID-19 pandemic. Adults under the age of 65 with disabilities and chronic health conditions were impacted by neoliberal processes of long-term care (LTC) reform and the closure of provincial residential institutions for people with disabilities. Gaps in public health and social care associated with these changes led some non-senior adults to turn to LTCFs when their needs were not being met. Very little is known about the situation of younger residents, who comprise less than eight percent of the total resident population in Ontario’s LTCFs. I address this gap by exploring non-senior residents’ “conditions of care”—the practices, interactions, relationships, and structures that make up their everyday experiences living in a LTCF. My study asks: What are the conditions of care for younger residents, do they align with their needs and preferences, and what factors account for the value of and problems with these conditions? Guided by a relational feminist disability perspective, I address these questions by drawing on data from semi-structured interviews with younger residents, direct care workers, and administrators, as well as from a focus group with family members, field notes, and facility-specific documents. I analyze the data as informed by intersecting relations of difference and inequality associated with gender, disability and age, and as situated within a particular set of contexts. My findings demonstrate that for non-senior residents, the promise of LTCFs lies in relational care—the presence of favourable interpersonal care relationships and the practice of care in relational ways. However, relational care is often prevented by the structures of LTC, particularly those associated with public funding inadequacies and the application of strategies associated with new public management (NPM). Addressing these barriers is key to transforming LTCFs into places that are better for younger residents. But LTCFs will not be appropriate until a range of accessible, high quality, public LTC and social services are also made available.