(uniquement en anglais)
By: Charlotte Burke
Note to the Reader:
This paper offers a broad, national-level assessment of long-term care in Canada through a public health law lens. It is intended to highlight key structural issues and propose a conceptual shift toward deinstitutionalization. While jurisdictional differences are acknowledged, the paper does not provide a detailed analysis of the specific laws and regulations governing long-term care across individual provinces and territories.
Summary
The COVID-19 pandemic revealed vulnerabilities in Canada’s long-term care (LTC) systems, such as chronic underfunding, staff shortages, inadequate infection control, and systemic neglect1. These failings resulted in disproportionate harm for older adults in institutional settings while also underscoring broader societal issues, such as pervasive ageism and the undervaluation of LTC in policy and practice.
This crisis demands a fundamental rethinking of Canada’s reliance on institutional LTC models. Disability rights advocates have long criticized institutionalization for isolating individuals from their communities and infringing on human rights, emphasizing the need community-based care options that better promote of dignity, autonomy, and social inclusion. Despite this, Canadian policymakers continue to view LTC institutions as the default, if not sole, solution for individuals requiring high levels of support, such as those living with dementia.2
This paper will begin by examining the systemic shortcomings of LTC. It will then use the landmark decision in Disability Rights Coalition v Nova Scotia (Attorney General) as a case study to explore how legal frameworks can support the transition away from institutionalized care. In addition, this paper will assess non-institutional care models, with reference to European examples such as home care and community-based initiatives, and will examine the legal, systemic, and societal barriers to their adoption.
Ultimately, this paper calls for a transformative shift in how Canada supports older adults, advocating for the replacement of institutionalized care with equitable, inclusive, and sustainable models that promote dignity, autonomy, and social inclusion.
Introduction:
A. Long-Term Care and Aging
Canada is experiencing a rapidly aging population. By the early 2030s, it is estimated that more than one in five Canadians will be over the age of 65, marking the country’s transition to a “super-aged” society.3 As the prevalence of chronic diseases is expected to rise alongside the aging population, the current demand for long-term care (LTC) is expected to increase significantly.4
LTC refers to a broad range of services for persons who are dependent on assistance with basic activities of daily living over an extended period of time.5 In Canada, LTC is s delivered through a mix of home-based and institutional services; however, the system remains heavily weighted toward institutional care, where the majority of services are provided.6 According to Health Canada, these long-term care institutions (LTCIs) “provide living accommodation for people who require on-site delivery of 24 hour, 7 days a week supervised care, including professional health services, personal care and services such as meals, laundry and housekeeping.”7 LTCIs have a long history in Canada, with some dating back over a century (to be discussed later in paper).8
In Canada residents of LTCIs are primarily older adults. Research indicates that 91% of residents are over age 65, with 74% over age 80.9 Further, it is estimated that four out of five residents have dementia.10 In Ontario, it is suggested that 90% of LTCI residents have some form of cognitive impairment, while 86% need help with basic activities such as getting out of bed or eating.11
Gender and socioeconomic status are key determinants of LTCI utilization in Canada. Women over the age of 65 are more likely than their male counterparts to have chronic health conditions, while also having a longer life expectancy and lower average incomes.12 As a result, the typical LTCI resident is over 80 years old, female, single, and has a lower income than peers who continue living at home.13
Although data on health disparities within LTCIs is limited, broader evidence suggests that race and ethnicity may also play a role.14 First Nations individuals in Canada experience persistent health disparities throughout their lives, which often continue into old age, increasing the likelihood of dependence on institutional care.15 Older immigrants, particularly those with a language barrier, often experience difficulty accessing health services.16 Further, geographic location also impacts health outcomes, as older adults living in rural or remote areas often face limited service availability, long travel distances, and fewer care options.17
While LTCIs are commonly considered essential for providing care to older adults with dementia and significant support needs, they are also often viewed with fear and aversion.18 A 2021 survey found that 96% of Canadians over the age of 65 did not wish to live in LTCIs, highlighting a profound apprehension towards institutionalized care.19 This fear is not unfounded; the COVID-19 pandemic devastated LTCIs, disproportionately impacting residents both in terms of the number of outbreaks and deaths.20 Overall, 69% of Canada’s COVID-19 deaths occurred in these facilities, accounting for the worst record among OECD countries.21
The pandemic provided compelling evidence that systemic neglect has profoundly affected the health and well-being of this population. Coroner’s inquests and inquiry reports following the pandemic have confirmed the dire need for fundamental reforms in LTCIs.22 Before the pandemic, institutional LTC was largely absent from Canadian policy debates.23 However, the devastating impact of COVID-19 has brought unprecedented public and political attention to these long-neglected issues, creating a critical opportunity to reshape the policy agenda.
B. Institutions as Carceral Spaces
LTCIs share concerning structural and operational similarities with carceral facilities, a parallel starkly highlighted by the COVID-19 pandemic. Many of the conditions that made LTCIs so vulnerable to COVID-19 (overcrowding, poor ventilation, etc.) echo those found in prisons.24 Beyond these structural failings, pandemic-era public health measures such as restrictions on visitors, including outright bans, brought concerns about the exclusionary nature of LTCIs to the forefront. These restrictions has led scholar Ana Koncul to question whether the resemblance between LTCIs and carceral spaces is a temporary phenomenon in times of crisis or a perpetual reality embedded in their design and operation.25
Like prisoners, LTCI residents are often isolated from broader community and subjected to institutional policies that tightly regulate their daily lives.26 These policies can dictate when residents eat, sleep, or leave the premises, mirroring the rigid control exerted over incarcerated individuals.27 Confinement in LTC facilities extends beyond social and environmental constructs, involving tangible practices such as the use of physical restraints (e.g., belts, straps, locked units).28 While some residents may passively accept such constraints, others are coerced or forced into LTCIs, effectively deprived of their liberty under the guise of care.29 As scholar Ana Koncul articulates:
While LTC homes for older people with dementia are not prisons, they represent a distinct form of carceral institution embedded in the discourse of care rather than punishment. Nonetheless, LTC homes and prisons work on ‘parallel tracts and logics,’ and disabled people, including people with dementia, routinely experience the discourses of care and punishment at the same time.30
For decades, advocates for disability rights have opposed physical and social segregation through institutional living.31 Institutionalization, they argue, is not only unnecessary but also fundamentally dehumanizing, perpetuating physical, spiritual, and emotional harm.32 Despite this, responses to the isolation and segregation inherent in LTCIs for older adults, particularly those with dementia, have remained conflicted.33
While institutionalization has been contested by many communities, it persists as an accepted model of care for older adults in Canada. This dissonance underscores the urgent need to reimagine eldercare, challenging the assumption that large, institutional settings are the only viable option for older adults. Drawing from prison abolition and deinstitutionalization movements, a transformative vision for eldercare emerges: What if older adults received care in their home or communities?
Part I: the canadian long-term care system
A. Historical Development of Long-Term Care in Canada
“LTC in Canada” is often misleading, as it implies a level of uniformity and cohesion that does not exist. Each province and territory have developed its LTC systems independently, shaped by distinct historical, political, and social factors. This has resulted in a fragmented and diverse landscape of LTC in Canada, rather than a cohesive national approach.34
The roots of residential LTC for older adults in Canada trace back to the Elizabethan Poor Law of 1601.35 This law perpetuated systemic neglect and mistreatment of vulnerable populations, including older adults, by framing their needs as moral failings rather than collective responsibilities. Consequently, Canada’s early LTC systems emerged not as dedicated care providers but as shelters of last resort, such as poorhouses, county homes, parishes, poor farms, and almshouses.36
During the 19th century, some provinces began establishing specialized facilities, such as orphanages for children, hospitals for those with mental illnesses or disabilities, and homes for individuals who were blind or deaf.37 Despite these developments, older adults and people with chronic illnesses often remained in workhouses.38 Over time, many poorhouses transitioned into homes for the aged, ‘evolving by default rather than intentional design’.39
By the 1920s and 1930s, some private hospitals began to emerge as alternatives to workhouses. However, these institutions primarily provided shelter and offered little to no nursing care.40 Despite their limitations, they also became precursors to modern LTC facilities.41 After the Second World War, Canadian governments at the municipal, provincial, and federal levels reluctantly expanded funding for and regulation of LTC facilities.42 These efforts were driven by public pressure and were implemented in a piecemeal fashion, leaving residential LTC facilities disconnected from broader health and social service schemes.43
In 1952, federal pensions became available to individuals over the age of 65.44 Some policymakers optimistically predicted that these pensions would reduce reliance on institutional care, or even make LTCIs obsolete.45 While pensions helped some older adults maintain independence, the absence of adequate public home care services and affordable housing left many with few alternatives, resulting in continued reliance on institutional care.46 Overall, the federal government has adopted a mostly hands off approach to LTC, reflecting its narrow focus on medical care, while custodial care is still thought of as a mainly private, family responsibility.47
In 1967, Ontario’s Minister of Health described LTCIs as suitable “when the families cannot, or will not, any longer maintain [their older relatives].”48 This perspective has shaped the development of LTC policies and institutions across provinces, none of which began from a social care model based on public ownership.49 Many LTCIs still carry legacy of poorhouses, rooted in stigma and regarded as shelters of last resort for those with no other options.50 While efforts to modernize LTC have been made, Canada’s approach has remained reactive and fragmented, a legacy of its piecemeal historical development.51
B. Regulation of Long-Term Care
Provincial jurisdiction over LTC has been inferred as part of their constitutional authority over hospitals, property and civil rights, and local matters under sections 92(7), 92(13), and 92(16) of the Constitution Act, 1867.52 Consequently, legislation regulating the delivery of these services and LTCIs has been implemented in all provinces and territories.
The federal government supports LTC through discretionary spending powers.53 However, while the federal Canada Health Act (CHA) does mention adult residential care services and nursing home services as part of “extended health services”, there are no further regulations or funding conditions to standardize LTC across provinces/territories.54 This omission has resulted in LTC being placed outside the scope of the CHA’s universal, portable, comprehensive, accessible, and public administration tenants.
Various stakeholders have urged the federal government to either specifically include LTC in the CHA or to implement separate legislation on LTC that would include national standards.55 The federal government recently announced voluntary standards for improving LTCIs.56 However, voluntary standards will not likely improve care, because even in Canada’s largest province, Ontario, LTCI regulations are rarely enforced.57 Further, few LTCIs are inspected each year; for example, only 1 per cent in 2018.58
As LTC facilities are typically governed by provincial and territorial healthcare legislation there is significant regional variation in facility naming, ownership, governance, and the level or type of care provided.59 Furthermore, comprehensive national analyses of LTC is limited, which makes discussions at the national level challenging.60 In general, LTC across Canada is a mixture of public, private not-for-profit and private for-profit providers of home, community, retirement home and other institutional services.61
The cost of LTC in Canada is shared between provincial governments and private sources.62 Provinces also differ in the extent to which they subsidize home and LTC services for the elderly, but the overall funding models are very similar.63 In most provinces, institutional LTC funding frameworks are designed to distinguish between health-related services, such as nursing, physician care, and personal support, and non-medical costs, including accommodation, meals, and housekeeping.64 This distinction is used to justify requiring residents to make private co-payments for room and board, based on the rationale that these are costs they would incur if living independently in the community.65 On average, provincial governments cover approximately 75% of institutional LTC expenses.66
In contrast, public coverage for home and community-based care is more limited, with provinces paying a smaller share of the total costs.67 While essential nursing and medical services are typically funded by the province, many supports for daily living, such as meal preparation or housekeeping, require either private payment or informal caregiving, often provided by family members.68 For the substantial number of older adults who rely solely on informal care, the full financial and emotional burden falls on unpaid caregivers. Despite their central role in sustaining the LTC system, the costs associated with informal caregiving are largely absent from policy discussions. This omission obscures the true scale of public reliance on unpaid care and undermines efforts to design equitable and sustainable LTC policies.69
C. Ageism Embedded Within Long-Term Care Policies
To pursue deinstitutionalization, we must first understand what drives LTC institutionalization. The Royal Society of Canada identified systemic age and gender discrimination as the root causes of COVID-19’s disproportionate impact on LTCIs.70 Ageism is the systematic stereotyping of, and discrimination against, people simply because of their age. Systemic ageism clouds much of Canada’s social policies.71 It is evident in policies like mandatory retirement and in the entrenched perception of aging as synonymous with physical and cognitive decline, dependence, and an economic burden on public systems.72
These ageist narratives reinforce the notion that older adults are less deserving of equitable treatment, further justifying the creation of separate programs and services that marginalize them as outsiders.73 This pervasive exclusion often marginalizes older adults from social participation and normalizes their segregation into institutionalized settings. Scholars in “A Conversation about Ageism: Time to Deinstitutionalize Long-Term Care?” argue that hesitancy to pursue deinstitutionalization stems from a collective failure to fully recognize the personhood of older adults.74 This was particularly evident throughout the pandemic when many older adults felt expendable versus valued.75
This reflects a broader ageist framework within knowledge production that permeates Western health and social care systems.76 These systems often frame aging as a condition that must be managed or even controlled, thereby normalizing institutional responses.77 The perception of institutionalization as an unavoidable solution may also be rooted in an inability to envision alternatives where older adults, especially those with complex needs, can thrive outside of such settings.78 Even within disability studies and activist movements that champion deinstitutionalization, there remains an implicit acceptance that while younger disabled people should avoid LTC facilities, older adults may be expected to transition into them as part of the natural aging process.79
Ageism also drives exclusionary practices among residents within institutions. Residents without dementia may avoid interacting with those with dementia, viewing them as representations of aging’s ‘physiological failure’.80 Further, ageist discourses may lead some seniors to self-exclude out of a misplaced sense of altruism, believing their participation is a burden.81
To advance deinstitutionalization, we must challenge these deeply entrenched norms and assumptions. This requires reimagining care frameworks that prioritize the dignity, autonomy, and personhood of older adults. Confronting ageism and exclusionary practices is essential to creating a future where all seniors, regardless of their needs, can thrive outside institutional settings. Transforming Canada’s approach to eldercare demands a paradigm shift that centers on human rights and the inherent value of every individual.
Part II: moving towards deinstitutionalization
A. Principles of Deinstitutionalization
The concept of “deinstitutionalization” refers to both historical and ongoing advocacy efforts aimed at closing large-scale institutions and replacing them with community-based support systems.82 This movement is driven by two central arguments: enhancing quality of life for care recipients and ensuring the sustainability of care systems.83 The first argument emphasizes that care systems must prioritize the protection of fundamental human rights. Institutional settings, which segregate residents from their communities, often restrict autonomy and compromise basic rights. In contrast, living independently within a community fosters dignity, autonomy, and inclusion.84 Moreover, community-based care aligns with the preferences of older adults. The second argument is supported by growing evidence that community-based care solutions can deliver better outcomes for users and their families while being cost-effective for the state or comparable in cost to institutional care.85
Successful deinstitutionalization relies on several core principles: ‘Respecting users’ rights and involving them in decision-making; Prevention of institutionalisation; Creation of community-based services; Closure of institutions; Restriction on investment in institutions; Development of human resources; Efficient use of resources; Control of quality; Holistic approach; and Continuous awareness-raising.’86
The cornerstone of deinstitutionalization is the establishment of flexible, community-based care services. However, this alone is not sufficient to achieve meaningful deinstitutionalization. In some cases, transferring institutional practices to community settings without substantial cultural and procedural changes can inadvertently perpetuate the status quo.87 To succeed, non-institutional care providers must undergo a cultural shift that prioritizes user autonomy, granting beneficiaries and their family caregivers’ greater choice and control over care decisions.88
B. Case Study: Disability Rights Coalition v Nova Scotia (Attorney General)
In 2014 three Nova Scotians filed a human rights complaint with the Nova Scotia Human Rights Commission, alleging discrimination by the province on the basis of disability and source of income in its provision of social assistance, when it supported them in institutions rather than the community.89 The Disability Rights Coalition (DRC) (a collective of advocacy groups and individuals) joined with a systemic claim, arguing that the Province’s policies and practices that have resulted the unnecessary institutionalization of hundreds of people with disabilities.90 The DRC identified systemic issues such as inadequate access to social supports, delays in community living placements, and relocation far from their communities of origin which severed ties to family and friends.91 The DRC asserted that these failures deprived people with disabilities of the “equal opportunity to enjoy a full and productive life.”.92
Initially, the Nova Scotia Human Rights Board of Inquiry found only prima facie discrimination against the individual complainants. However, on appeal, the Nova Scotia Court of Appeal (NSCA) issued a landmark ruling that also recognized systemic discrimination in Nova Scotia's provision of social services for persons with disabilities. The Court found compelling evidence that Nova Scotia’s social assistance system disproportionately disadvantaged persons with disabilities compared to non-disabled recipients.93 It held that practices such as indefinite waitlists, forced relocations to access services, and the failure to provide disability supports as an entitlement were discriminatory under the Human Rights Act.94
Critically, the Court rejected the notion that financial constraints could justify denying disabled individuals the right to live with dignity and autonomy in their communities.95 The decision marked a pivotal moment in Canadian disability rights jurisprudence, affirming that unnecessary institutionalization constitutes a violation of fundamental rights.96 It also sent a strong message to provincial governments that funding and facilitating access to community-based supports is not optional, it is essential to fulfilling human rights obligations and preventing systemic discrimination.
The final outcomes include the closure of all institutional facilities, the elimination of waitlists for accessing social assistance and the supports necessary to live in a community setting of one’s choosing, and the fulfillment of the government’s legal duty to provide social assistance as a right to all eligible individuals, in alignment with the Human Rights Act. These outcomes are mandated by a legally binding Interim Consent Order, which requires the province to remedy systemic discrimination by March 31, 2028.97 The order establishes clear timelines, measurable outcomes, and robust monitoring and enforcement mechanisms, setting a new standard for government accountability in the delivery of social services.98 Importantly, the order provides a concrete, enforceable roadmap that other jurisdictions and advocacy groups can draw upon when pursuing remedies for violations of economic, social, and cultural rights, demonstrating how legal tools can be leveraged to achieve systemic reform.99
While the Disability Rights Coalition case sets a precedent for addressing systemic discrimination, its applicability to LTC policy is limited. The case relies on provincial human rights law and focuses on social assistance for persons with disabilities. For older adults in LTC, strategic litigation will need to further explore how human rights frameworks can be used to challenge institutionalization and prove systemic disadvantages compared to younger populations.
Older adults in institutional care often face daily violations of fundamental rights enshrined in international human rights law and the “Canadian Charter of Rights and Freedoms Declaration”, including the right to the equal protection and equal benefit of the law without discrimination, particularly based on age or mental or physical disability;100,101 the right to liberty and personal security;102 the right not to be subjected to any cruel and unusual treatment;103 the right to the highest attainable standard of physical and mental health;104 and the right to live independently and being included in the community.105
Policy advocacy inspired by the DRC case can provide valuable for reimagining LTC policy to uphold these rights, ensuring that older adults are not forced into institutional settings and can instead live with dignity and autonomy within their communities.
C. Non-institutional Care Models
The goal of non-institutional care models in the context of deinstitutionalization is to create systems that enable individuals, whether older adults or people with disabilities, to live with dignity, autonomy, and adequate support in environments that align with their preferences. These models represent a transformative departure from the traditional institutional model of care. Instead, they prioritize community-based, family-centered, or home-based care arrangements that promote social inclusion and holistic well-being.
This section explores two key categories of non-institutional care: homecare models and community-based supportive housing.
I. Homecare Models
Homecare is an essential strategy for reducing reliance on institutionalized care for individuals with dementia and other age-related conditions.106 However, there are several factors to consider in whether a home is suitable for independent living, such as affordability, and accessibility of the home, surrounding neighbourhood, nearby services and supports. Enabling independent living often requires care, supports, and home modifications that can be expensive and are generally paid for out of pocket.107 Greater investment into home care will be critical in the to expand available programs, as well as potential financial supports for those who do not have the means to pay out of pocket.
Underinvestment has left Canada trailing behind comparable countries such as Switzerland, Germany, Denmark, and the Netherlands, where a much higher proportion of older adults live at home.108 However, increased investments in homecare are considered economically advantageous in the long-term as general homecare is consider significantly more cost-effective than institutional facilities.109
Critics point out that the reduced healthcare costs for governments associated with homecare may be largely due to unpaid care partners.110 Homecare often relies heavily on unpaid caregivers who are primarily women.111 These caregivers provide physical and emotional support, coordinate paid care, and fill gaps left by underfunded government services.112 However, this reliance comes at a significant cost to caregivers, who may experience financial strain, reduced career prospects, and adverse mental and physical health outcomes.113 These challenges are exacerbated by insufficient government compensation, inadequate workplace accommodations, entrenched by societal ageism and gender discrimination.114
As a care recipient’s ability to remain independent for as long as possible often relies on the ability and willingness of the caregiver to provide care, the two often need to be addressed as a unit.115 European examples have underscored that both well-developed homecare and support schemes for family caregivers are necessary preconditions but none is, in isolation, sufficient for maintaining institutionalisation rates low.116 To create a sustainable homecare system, care plans must address the interconnected needs of both caregivers and care recipients. Supporting caregivers through financial assistance, workplace flexibility, and comprehensive social policies is critical to ensuring that homecare remains a viable and equitable alternative to institutional care.
Additionally, Canadian homecare may also be hindered by limited individual autonomy over service options. While some provinces have introduced small-scale, self-directed care models with cash subsidies, most services are still provided “in kind”.117 In contrast, international examples demonstrate the success in encouraging more substitution of homecare for institutional care by empowering individuals and families to customize care packages.118
In order to better support the values underlying deinstitutionalization Canadian homecare systems must prioritize flexibility, autonomy, and choice. Empowering individuals and families to design and direct their care allows for more tailored solutions that reflect the diverse needs and preferences of care recipients and caregivers. This approach not only aligns with the values of dignity and independence but also ensures that resources are allocated efficiently, fostering a system that better supports aging in place while reducing reliance on institutional care.
II. Community-based supportive housing
For some older adults, homecare may not be a viable option due to barriers such as rural isolation, lack of available caregivers, inadequate housing, or advanced care needs.119 In these cases, alternative solutions are necessary. Community-based supportive housing (“CBSH”) offers a balanced approach between independent living and institutional care, fostering inclusion, dignity, and autonomy while providing essential support.120
CBSH encompasses various housing arrangements, including Supportive Housing programs, which provide 24/7 care management for high-risk populations, and Group Home Living, where individuals share living spaces with access to care.121 CBSH is strategically integrated into neighborhoods, co-locating older adults with people of all ages near schools, daycares, shopping areas, and community centers. This integration prevents the segregation of older adults in large institutional settings.122
The physical design of CBSH, such as the “small house” model, is particularly effective.123 These model emphasize home-like environments with accessible layouts, communal spaces, and fewer residents per unit.124 Research from Belgium shows that such designs enhance residents' mobility, encourage social interactions, and improve staff experiences by reducing stress and enabling more flexible care delivery.125 Innovative models like the Netherlands’ Dementia Villages go further by recreating entire communities that integrate markets, cafés, and theaters, allowing residents to engage in everyday activities.126 Similarly, Green Care Farms involve residents in agricultural operations, combining care with meaningful participation.127 While providing complex medical care in these settings can be challenging, they represent promising alternatives to institutional care, emphasizing holistic well-being and social inclusion.
In contrast to the small house model, over half of LTCIs in Ontario have more than 100 beds. Even in smaller provinces, such as Nova Scotia and Manitoba, 48% and 37% of beds are still in large residences.128 While larger facilities may offer a broader range of services, activities, and unionized support for workers, they often feel more like institutions than homes, especially when residents lack private rooms.129 This institutional model prioritizes operational efficiency and cost-effectiveness over fostering environments that promote dignity, individuality, and meaningful connection.
Part III: advocating for transformative change
In reimagining LTC through the lens of deinstitutionalization, it is crucial to delineate between incremental policy adjustments and transformative change.130 Incremental shifts typically involve small-scale modifications to existing systems, such as increasing funding for homecare services or improving conditions in LTCIs. While these incremental changes may provide temporary benefits and may improve quality of life for some individuals, they often fail to address the systemic issues that perpetuate reliance on institutional care, ultimately serving as band-aid solutions.131
In contrast, transformative change aims to fundamentally restructure LTC systems to prioritize autonomy, dignity, and community integration.132 Achieving this ambitious vision requires not only reallocating resources but also reshaping societal attitudes, legal frameworks, and policy objectives to dismantle the entrenched reliance on large-scale institutions.133 Transformative change envisions a future where aging is supported through robust community-based networks and personalized care strategies, emphasizing individual choice rather than isolating congregate settings.
Furthermore, to combat the ageism driving institutionalization and achieve meaningful transformation, it is imperative to adopt a human rights framework for older adults. This framework should recognize and affirm the humanity of older individuals under both the Charter and international human rights law.
By incorporating a public health law perspective, this section examines various legal and policy strategies that can foster transformative change in LTC through deinstitutionalization. It explores distinct models of legal intervention that can promote a more equitable and inclusive approach to LTC.
A. Power to Tax and Spend
Governments can leverage fiscal policies to promote community-based care models over traditional institutional arrangements. By increasing financial support for in-home care providers, enabling them to offer a wider range of personalized services tailored to individual needs. These initiatives could include subsidies for home modifications, such as installing accessibility features or providing medical equipment, to help older adults live independently in their homes for longer. Additionally, funding could be directed toward hiring and training more caregivers, ensuring that there are enough qualified professionals to meet the growing demand for homecare.
Targeted funding could also subsidize community living arrangements for older adults by providing financial assistance to establish or maintain alternative housing options, such as cooperative housing or assisted living communities, that support aging in place. These funds could help ensure that these living arrangements are affordable and accessible, reducing the reliance on institutional care.
Additionally, in Sweden, the financial burden of LTC is collaboratively borne by national, regional, and local governments, with approximately 85% of costs funded through local and regional taxes.134 The Ädel reform, which made local authorities responsible for the costs of patients ready for discharge but unable to leave due to lack of community-based LTC arrangements, effectively incentivized municipalities to enhance home care services, thus averting more expensive hospitalization and reducing reliance on institutional care.135
B. Power to Alter the Informational Environment
Innovative policy frameworks can reshape the informational landscape surrounding LTC. By improving access to information about community resources, services, and support systems, policymakers can empower older adults and their families to make informed decisions that align with their preferences. Public awareness campaigns can also play a crucial role in countering ageism and demystifying aging-related issues, fostering a culture that values elder dignity and choice.
C. Power to Alter the Built Environment
Strategic investments in the built environment are essential for supporting independent living for older adults. In countries like Japan, significant resources have been allocated to creating senior-friendly housing, which facilitates aging in place and reduces rates of institutionalization.136 Provincial and municipal governments can similarly focus on urban planning laws and policies that prioritize age-friendly infrastructure, including accessible housing, community spaces, and public facilities that cater to the needs of older adults. Zoning laws can be adapted to accommodate universal design features, such as wider doorways and ramps, and create vibrant, well-connected community spaces that reduce isolation and enhance quality of life.
D. Power to Alter the Socio-Economic Environment
Financial instability can drive older individuals into institutional care, as they may lack access to the support needed for aging at home. Addressing socio-economic determinants of health is key to reducing the demand for institutionalized care. Policymakers should aim to subsidize care and provide affordable housing options that enable older adults to thrive in their communities. Additionally, integrating support for family caregivers into the socio-economic framework is vital. Offering stipends or tax relief for caregivers can reduce the financial burden of providing care at home, empowering more families to choose community-based models over institutional care.
E. Direct Regulation of Persons, Professionals, and Businesses
Provinces could regulate the expansion of institutional care and limiting the number of beds available to directly influence care options, encouraging resources to shift toward community-based alternatives.
As note earlier, a failure to change mind-sets and approaches around care is a formidable barrier to successful deinstitutionalisation. Legal interventions could mandate training programs for care professionals that emphasize the principles of deinstitutionalization, focusing on approaches that support independence and community integration. Laws could also be enacted to protect and support informal caregivers, including legal provisions around caregiver rights and training.
Regulations can further encourage collaborative care models, where professionals, families, and community organizations work together to create individualized care plans. This collaborative approach enhances the support network available to individuals, making it easier for them to thrive outside institutional settings.
Conclusion
In conclusion, the COVID-19 pandemic exposed deep flaws within Canada’s LTC systems, highlighting the critical need for change. The failure of institutional care models to protect vulnerable populations, compounded by systemic neglect and a pervasive culture of ageism, calls for a revaluation of how society cares for older adults. Legal precedents, such as the Disability Rights Coalition v Nova Scotia case, signal a crucial shift toward recognizing the rights of individuals to live in community-based environments that uphold dignity and autonomy. This paper advocates for the adoption of non-institutional care alternatives that more effectively meet the diverse needs of older adults. By exploring a range of legal and policy strategies, it has demonstrated the potential of fiscal, informational, built, and socio-economic interventions to transform LTC in ways that prioritize autonomy, dignity, and social inclusion. Consistent with emerging legal standards and the factual record of the COVID-19 pandemic, alternatives to institutional care constitutes not only a necessary policy reform, but a legal and moral imperative grounded in the recognition of older adults’ rights to dignity, autonomy, and equality under the law.
Bibliography
Legislation
Canada Health Act, Canada Health Act, RSC 1985, c C-6
“Canadian Charter of Rights and Freedoms”, Part I of the Constitution Act, 1982, being Schedule B to the Canada Act 1982 (UK), 1982, c 11
Constitution Act, 1867 (UK), 30 & 31 Victoria, c 3, reprinted in RSC 1985, Appendix II, No 5.
“Convention on the Rights of Persons with Disabilities”, 13 December 2006, (entered into force 3 May 2008, accession by Canada 2010).
“International Covenant on Economic, Social and Cultural Rights”, 16 December 1966, 993 UNTS 3 arts 12 (entered into force 3 January 1976, accession by Canada 1976).
Jurisprudence
Disability Rights Coalition v Nova Scotia (Attorney General), 2021 NSCA 70
Secondary Sources
Armstrong, Pat et al, “They deserve better: The long-term care experience in Canada and Scandinavia”. (Ottawa: Canadian Centre for Policy Alternatives, 2009)
Banerjee, Albert, “An Overview of Long-Term Care in Canada and Selected Provinces and Territories”, (Toronto: Women and Health Care Reform, 2007)
Bartnik, Eddie & Tim Stainton, “Human Rights Review and Remedy for the Findings of Systemic Discrimination Against Nova Scotians With Disabilities” (Technical Report of the Independent Experts to the Disability Rights Coalition and the Province of Nova Scotia, 2023)
Berta, Whitney et al, “A pan-Canadian perspective on institutional long-term care.” (2006) 79:2-3 Health Policy 175-194
Blomqvist, Ake & Colin Busby, “Shifting Towards Autonomy: A Continuing Care Model for Canada”, (Ottawa: CD Howe Institute, 2016)
Canadian Institute for Health Information, “Long-term care homes in Canada: How many and who owns them?” (10 June 2021), online
Canadian Institute for Health Information, “Pandemic Experience in the Long-Term Care Sector: How Does Canada Compare with Other Countries?” (Ottawa: CIHI, 2020)
Canadian Institute for Health Information, “The Impact of COVID-19 on Long-Term Care in Canada: Focus on the First 6 Months” (Ottawa: CIHI, 2021)
Descurninges, Clara, “Coroner’s inquest finds Laval long-term care residents dehydrated, starving and rarely cleaned”, CTV News (21 June 2021), online
Disability Rights Coalition of Nova Scotia, “Legal Submissions and Briefs”, online
Disability Rights Coalition of Canada, “Systemic Human Rights Remedy Ordered” (July 13, 2023), online
Estabrooks, Carole et al, “Repair and Recovery in Long-Term Care: Restoring Trust in the Aftermath of COVID-19 (2020-2023)”. (Ottawa: Royal Society of Canada, 2024)
Estabrooks, Carole et al, “Restoring Trust: COVID-19 and The Future of Long-Term Care” (Ottawa: Royal Society of Canada, 2021)
Flanagan, A et al, “Enabling a More Promising Future for Long-Term Care in Canada” (Toronto: National Institute on Ageing, 2023)
Flett, Gordon L & Marnin J Heisel, “Aging and Feeling Valued Versus Expendable During the COVID-19 Pandemic and Beyond: a Review and Commentary of Why Mattering Is Fundamental to the Health and Well-Being of Older Adults” (2020) 19 Int J Mental Health & Addiction Flett 2443-2469
Health Canada, “Long-term facilities-based care” (last modified: 01 Oct 2004), online
Health Excellence Canada, “Shaping the Future of Care Closer to Home for Older Adults” (Ottawa: Health Excellence Canada, 2022)
Herron, Rachel V et al, “Assisted living facilities as sites of encounter: implications for older adults’ experiences of inclusion and exclusion” (2020) 40:7 Ageing and Society 1577-1593
Herron, Rachel, Christine Kelly & Katie Aubrecht, “A Conversation about Ageism: Time to Deinstitutionalize Long-Term Care?” (2021) 90:2 University of Toronto Quarterly 183-203
Ilinca, Stefania, Kai Leichsenring & Ricardo Rodrigues, “From care in homes to care at home: European experiences with (de)institutionalisation in long-term care” (Vienna: European Centre, 2015)
Kim, Paul J, “Social Determinants of Health Inequities in Indigenous Canadians Through a Life Course Approach to Colonialism and the Residential School System” (2019) 25:3 Health Equity 378-381
Koncul, Ana et al, “Long-Term Care Homes: Carceral Spaces in Times of Crisis or Perpetually?” (2023) 26:3 Space and Culture 309-322
Labrie, Yanick, “Rethinking Long-Term Care in Canada: Lessons on Public-Private Collaboration from Four Countries with Universal Health Care” (Fraser Institute, 2021)
Lévesque, Maude & Margaret Oldfield, “A Roadmap of Noninstitutional Living Options for People with Dementia: ‘Don’t Fence Me In’” (2024) 20:1-10 Can J Aging
Longstaff, Whitney, Jody Filkowski & Melissa Severn, “The Small House Model to Support Older Adults in Long-Term Care” (2022) 2:1 Can J of Health Technologies 1-22
Mah, Jasmine & Benjamin Gallup, “A Short History of Long-Term Care in Nova Scotia*” (2021) 24:1 Can Geriatr J 77-81
OCED, “Long-term Care: Growing Sector, Multifaceted Systems”, in F Colombo et al, “Help Wanted?: Providing and Paying for Long-Term Care” (Paris: OECD Publishing, 2011)
Ontario Long Term Care Association, “This is Long-Term Care 2019” (Toronto: Ontario Long Term Care Association, 2019)
Pandey, Mamata et al, “Impacts of English language proficiency on healthcare access, use, and outcomes among immigrants: a qualitative study” (2021) 21:741 BMC Health Services Research 1-13
Public Health Agency of Canada, “Aging and Chronic Diseases: A Profile of Canadian Seniors” (Ottawa: PHAC, 2020)
Statistics Canada. “Population projections: Canada, provinces and territories, 2023 to 2073” (24 June 2024)
Suhomlinova, Olga et al, “Locked up While Locked Down: Prisoners’ Experiences of the COVID-19 Pandemic” (2022) 62:2 The British Journal of Criminology 279-298
Thirgood, J & E Egulu, “Aging Canada 2040: Policy Implications of Demographic Change” (Toronto: Canadian Standards Association, 2024)
Welsh, Moira, ““Canada will soon become a ‘super aged’ country. Here’s why that’s a problem.” Toronto Star (25 April 2024), online