(APS3) Towards Just Care: Unpacking the politics, possibilities, and perils of home care

While home care carries with it the possibility of interdependence, autonomy, and deinstitutionalization, it is situated within broader contexts of colonial extraction, transnational migration, and the austere neoliberal welfare state. In its current form, home care harms low-income im/migrant workers, disabled people and people with dementia, for the benefit of corporate home care companies. Contemporary home care conditions, including waitlists to access care, precarity, and inconsistency reinforce reliance on institutionalization, informal caregiving, and emergency room visits. Simultaneously, direct care work itself can be debilitating while many im/migrant direct care workers and their families face formal and informal exclusions in accessing state supports.In order to transform home care systems, there is a need to strengthen care relations and coalitional politics between im/migrant direct care workers and low-income disabled and older home care users. Dominant ideas in care theory, politics, and political organizing maintain the historical tensions that have sowed division between disabled people, older people, and im/migrant direct care workers. The politics and frameworks of disability and migrant justice disrupt these historical tensions by pursuing cross-movement solidarity in recognition of the entanglement of collective liberation. By centering relationality and forging coalitions, this session mobilizes social movement research and community-based participatory research (CBPR) approaches to grapple with the possibilities of disability and migrant justice-informed home care alternatives that build solidarity and coalition across equity-deserving communities. As organizers, researchers, care workers and care recipients, engaging with other grassroots organizations that work towards building community capacity through the lens of disability justice and migrant justice. Tags: Communities, Disabilities, Health and Care

Organizer: Megan Linton, Carleton University; Chairs: Megan Linton, Carleton University, Mary Jean Hande, Trent University

Presentations

Megan Linton, Carleton University; Alana Hart, Trent University

Towards just care: Envisioning disability and migrant justice-informed home care in Ontario

Low-income older adults, disabled people, and immigrant direct care workers often experience institutionalized forms of care, such as long-term care facilities, as precarious, exploitive, and even violent; this was especially evident during the pandemic. As such, the need and demand for socially just, and community-driven home care services has never been more urgent. Yet, Canada’s existing home care systems are under-resourced and fragmented, leaving people with inadequate access to community and home care services provided by precarious workers. This paper presents reflections and findings from a community-based research project that brings together diverse and historically marginalized perspectives on home care from racialized low-income older adults, younger disabled people, and im/migrant workers to collaboratively “map” Ontario’s existing home care systems and develop new coalitions and visions for integrated and socially just home care options. Partnered with the Disability Justice Network of Ontario, the project is guided by the question: How can disability and migrant justice frameworks inform home care system reform in Ontario? Preliminary findings indicate the need to understand home care beyond the narrow, medical funding model categories and instead to analyze how the multiple social programs and privatized sectors that provide home-based personal support services intersect with the myriad labour, employment, and migration policies that govern home care workers. These reflections are inextricably linked to our community engagement that values people’s lived experiences as a form of expertise that leads to policy recommendations that better address the needs of low-income home care users and immigrant care workers in Ontario.

Mary Jean Hande, Trent University

Access despite the institution: The work and praxis of cross-movement solidarity in community-based workshop planning

Direct-care workers and care receivers are often constructed as opposing interest groups, yet low-income seniors, disabled people and im/migrant direct-care workers all experience precarity, exploitation and violence in long-term residential care and homecare in Ontario. Our community-based participatory research project, Towards Just Care (TJC), aims to support the creation of homecare services that promote justice in care organizations and infrastructures, including working conditions and service delivery. With emphasis on unifying efforts to develop solutions that consider the mutual interests and needs of those who provide and receive home care, disability justice and migrant justice frameworks informed our methodology. A central tenet of disability justice is leadership of those most impacted. TJC centred and sought direction from direct-care workers and care receivers by creating a Community Advisory Council composed of representatives from im/migrant worker and older and disabled service user advocacy groups. In Fall 2023, TJC, hosted a visioning workshop for direct-care workers and care receivers to share space and engage in dialogue about delivering and receiving homecare in Ontario. The goals of this event were to to gain feedback and guidance on the project from the communities it aims to impact, and to build solidarity and coalition between groups historically imagined and constructed to be in opposition. The focus of this presentation is not the outcomes of the community visioning workshop, but the complex tasks and significant work involved in planning an event with concurrent anticipation and consideration for the access needs of multiple diverse groups. We will discuss the range of efforts taken and the substantial institutional barriers we encountered throughout the process. Working with the concepts of access friction and access intimacy, we reflect on the institutional tendency towards, and limitations of,  performative or “checklist” approaches to accessibility. We will articulate a vision for relational access as a counter-approach, emphasizing collective responsibility to support access and the benefit of adapting access practices to the specific needs of event participants. We suggest there is an ethical imperative for institutions to support and resource relational access, since the participation of historically marginalized communities is predicated on meaningful access praxis. This is particularly important in community-based research with communities that have been excluded from and/or harmed by academic institutions.

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Non-presenting authors: Sarah Malik, Trent University; Erika Katzman, King's University College at Western; Alessia Di Virgilio, Humber College; Leah Nicholson, Trent University; Jill-Anne Santiago, Migrants Resource Centre Canada; Bharati Sethi, Trent University; Ethel Tungohan, York University

Mary Jean Hande, Trent University

Home care work needs migrant justice: Immigrant caregiving power and mutual aid during the pandemic in Manitoba

Im/migrant home care workers in Manitoba, Canada, provide essential support with daily living for older disabled people living in the community (outside of nursing homes). During the pandemic, this support was often provided under grueling circumstances during the pandemic. Early race-based provincial COVID-19 data showed that Manitoba-based immigrant workers had disproportionately high COVID-19 rates. Nevertheless im/migrant home care workers were largely excluded from provincial COVID-19 policy responses and had difficulty navigating limited settlement services and health supports in the province. Mutual aid organizing and care activism, beyond their formal care work, were thus necessary for supporting themselves and their communities. Based on a community-based participatory research project, partnered with migrant justice group Migrante Manitoba, this presentation explores the practices and transformative potential of im/migrant workers’ care activism. We conducted semi-structured online interviews with 18 Manitoba-based im/migrant home care workers employed during the pandemic, 7 community leaders serving these im/migrant workers, a small online survey of Manitoba-based settlement workers (n=15), and insights from our project policy forum. We draw on frameworks of migrant justice, care activism (Tungohan, 2023), and transnational communities of care (Francisco-Menchavez, 2018) for analyzing the challenges and possibilities of care work and resistance in the context of intersectional exclusions (Lightman, 2021) during the pandemic. We outline multi-scalar/directional care activism discussed in our interviews and explore how it strengthened the collective wellbeing of im/migrant communities, supported transnational family ties, and called for transformative government policy change. We conclude by arguing that the home care sector needs migrant justice organizing to thrive. Moreover, such expansive care activism and cross-movement/community solidarity with care receivers might transform the ways that care relationships manifest and move us towards more ethical and just care practices that can challenge the intensifying precarity, violence, and privatization in Canada’s home care sector.

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Non-presenting authors: Leah Nicholson, Trent University; Susan Rodriguez, Migrante Manitoba; Mehmet Yavuz, University of Manitoba; Nelli V. Agbulos, GABRIELA BC

Laura Funk, University of Manitoba

Exploring the potential for mobilizing family carers of older adults in collective care advocacy: preliminary findings from a SSHRC-funded team project

Against the backdrop of inadequate public services, the home care status quo tends to ‘pit’ paid and unpaid carers against each other and strain relationships between older and disabled persons and their family members. This presentation describes an ongoing project exploring the potential for mobilizing unpaid family carers of older adults in collective activism. Our team identified how mainstream family caregiving advocacy reinforces moralizing representations of carers and decenters the role of the state, while re-entrenching divisions between people helping and being helped (Sawchuk et al., Dunsmore, in progress). Building on Levitsky (2014), and using a feminist rhetorical approach (Klostermann, 2019), we are exploring how and in what conditions family carers of older adults engage in everyday politicization and solidarity as they talk about their experiences. Preliminary findings from interviews in Winnipeg identify challenges in this regard among carers feeling particularly stuck in fraught familial relationships and difficult conditions. Yet there were also glimpses of possibility as participants variously resisted organizational expectations, set emotional and practical boundaries, contemplated the ‘end’ of their role, and imagined radically different care futures for older adults. Although problematic relationships with persons they were helping (or paid workers) complicates care, it does not preclude collective allyship, especially among carers who are themselves aging or facing other structured vulnerabilities. We conclude by discussing the complexities of intervening in conversations with carers in ways that engage them as allies in radical grassroots collective action that promotes racial, migrant, class and gender equity.

Cynthia Cranford, University of Toronto

The Private Home Care Market in Ontario: Implications for Aging People and Careworkers

This paper is part of an ongoing project to analyze the kind of private homecare market for aging people is being created in Canada by powerful actors, like government and employers, how homecare advocates are responding, and implications for quality care and carework. Canadians have long paid for cleaning and childcare using contract migrant labour programs or an informal economy of migrant workers (Arat-Koc 1997; Tungohan et. al 2015). For-profit companies have also provided state-funded homecare since the 1990s (Aronson and Neysmith 1996; Cranford 2020). Yet, a new completely private market, where homecare is delivered by private companies to paying, aging care receivers is rapidly developing in Ontario, making it an ideal research location, but has only recently been studied in the U.S., where it is more extensive (Coe 2019; Nazareno et. al 2022). The following questions inform this paper. Does Ontario government discourse, proposals or policies encourage employers to set marginalizing or empowering care? Does it encourage employers to set exploitative or rewarding work? Does it pit aging care receivers against workers? To determine how much the Ontario government is promoting a private homecare market, and its implications for the quality of care and carework, we will collect data on government officials’ public statements and emerging policies. Ontario’s explicit support of privatization accelerated with the Ford government, but it is unclear how much this extends into homecare. Thus, we will consult the Canadian Newstream search engine, filtered for Ontario from the beginning of Ford’s term in 2018 to 2024. We will create a sample of relevant articles using combined keyword searches (e.g., homecare AND family-funded - the government term for privately paid). We will conduct a content analysis to count the number of supportive statements made by government officials and the policy areas of support mentioned. Preliminary analysis suggests government support through subsidies for private employers, care receiver tax credits, and human resources policies. We will conduct discourse analysis to interpret how policies or proposals claim to shape conditions of care and carework.