The Right to Health Care
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In Module 3, we discussed how people with disabilities encounter significant problems with the health care system in Canada. However, most of us, or someone we care about, will need health care services at some point in life – including health care professionals themselves. This may be for a minor infection or illness, major surgery, or a need that falls between these two extremes. Ideally the services we receive as patients and provide as health care professionals would be timely, respectful, and effective.
International Covenants, the Canadian Charter of Rights and Freedoms, and Human Rights Laws
As we live in a country with a publicly insured health care system, most of us expect to receive services without charge. We have a right to those services, after all, we pay a lot for health care through the tax system! Unfortunately, we may have rights but not be able to enact them. At the end of this section you will find a video that considers the American approach to healthcare. Take some time to reflect on what you have read about the right to healthcare in Canada and consider the different approaches taken in the two nations.
International Covenants
Given the importance of health care services to general health and well-being, access to health care has been enshrined in the United Nations’ (UN) International Declaration of Human Rights since it was proclaimed in 1948 (UN General Assembly, 1948, Article 25.1). Later UN Conventions and interpretive Comments have further specified this right. Key among these is Article 12 of the International Covenant on Economic, Social, and Cultural Rights (UN General Assembly, 1966, Article 12). The UN Economic and Social Council (2000) has provided interpretive guidelines for that Article. In addition, Article 25 and related articles (e.g., 16, 22, 26, and 27) of the UN Convention on the Rights of Persons with Disabilities spell out in further detail some basic requirements for health-related rights that apply to people with disabilities. While Canada has signed these international agreements, they do not have the same status in Canadian law as laws passed by the national and provincial legislatures.
The Charter
The Canadian Charter of Rights and Freedoms (Canada, 1982) guarantees broad equality rights as well as fundamental freedoms, democratic rights, mobility rights, legal rights, and language rights. All levels of government must take the Charter into account to ensure their laws, policies, and programs are in line with it. Section 15.1 of the Charter states that “Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age, or mental or physical disability.”
Publicly Funded Health Care: The Canada Health Act
The Canada Health Act (CHA) provides for publicly funded health care insurance to support the primary objective of Canadian health care policy, which is “to protect, promote and restore the physical and mental well-being of residents of Canada and to facilitate reasonable access to health services without financial or other barriers” (Canada, 1985: s.3). The CHA aims to ensure that all eligible residents of Canada have reasonable access to insured health services on a prepaid basis, without direct charges at the point of service. To meet its objective, the CHA sets out basic criteria and conditions the provinces must meet in exchange for a full federal cash contribution through the Canada Health Transfer (CHT – see Canada, Department of Finance, 2022). The CHT supplements the funding of provincial healthcare systems. To qualify for the federal contribution the provinces must uphold five key principles in their publicly insured systems: (a) public (non-profit) administration, (b) comprehensiveness, (c) universality, (d) portability, and (e) accessibility. Sections 8 – 12 of the CHA explain what these terms mean. Universality and accessibility mean that all insured persons of the province (S.10) must be able to receive its insured health services on uniform terms and conditions, without charge or other barriers (S.12.1). All residents of a province are to be insured. Exceptions are people in federal penitentiaries or the Canadian Forces, which have their own healthcare service arrangements, and people who have not yet resided in a province for three months and were not previously a resident of another province, e.g., tourists, visitors, transient persons.
Although the federal government provides funding for healthcare services under the CHA and CHT, the administration and provision of healthcare is mainly a provincial/territorial responsibility.
Human Rights Laws
Human rights laws, such as the federal Canadian Human Rights Act, Ontario’s Human Rights Code, and other provincial/territorial human rights acts, provide safeguards against discrimination in jobs, housing, and services. These laws pertain only to the government and entities in the respective jurisdiction. For instance, Ontario’s Code and not the Canadian Human Rights Act has jurisdiction in Ontario, unless some matter in Ontario (e.g., employment discrimination in a federally regulated bank) falls within the scope of the Canadian Human Rights Act.
Ontario’s Human Rights Code prohibits discrimination in access to commonly used services, which would include publicly insured healthcare, on the basis of disability, citizenship, race, place of origin, ethnic origin, colour, ancestry, age, creed, sex/pregnancy, family status, marital status, sexual orientation, gender identity, gender expression, receipt of public assistance (in housing) and record of offences (in employment) (Ontario, 1990).
All human rights acts at the federal and provincial/territorial levels impose a “duty to accommodate”. This means that the needs of people with disabilities (and others covered by the legislation) who are adversely affected by a requirement, rule or standard must be accommodated so people with disabilities have equal opportunities, access and benefits. The duty to accommodate extends up to the point of “undue hardship” for the person or organization providing the accommodation. Accordingly, to anticipate and prevent potential problems, services and facilities should be designed inclusively and must be adapted to accommodate the needs of people with disabilities in ways that promote integration and full participation (Ontario Human Rights Commission, 2016: Sections 8–9).
Disability-Specific Human Rights Legislation: The AODA
The human rights process is driven by individual complaints. As such it is time consuming, costly, and produces results that may address individual complaints but seldom translate to systemic solutions for others experiencing similar difficulties.
Relatively new human rights legislation with a focus on people with disabilities aims to address such shortcomings by more clearly articulating expectations for accessibility and inclusion, which if met could help stem the number of individual complaints. The Accessibility for Ontarians with Disabilities Act (AODA) and its regulations is such a piece of legislation. The regulations for the AODA constitute accessibility standards that cover information and communications, employment, transportation, the design of public spaces, and customer services.
Until recently the accessibility standards covered hospitals and other regulated health facilities and services, but did so in a fragmentary way. The standards did not provide specific guidelines for hospitals, clinics, doctors’ offices, or other health care spaces, and did not cover the built environments of older hospitals and health care facilities (e.g., Kovac, 2019a, 2019b). A new standard is being developed to address such issues. The final recommendations report of the Health Care Standards Development Committee (Ontario, Ministry for Seniors and Accessibility, 2022) outlined many areas that require attention. The Committee’s full report begins with sections on barriers to accessible health care in hospital settings, guiding principles for recommendations, reflections on COVID‑19 experiences, and a statement of the vision and long-term objectives of the health care standard. The report then provides twenty recommendations and some additional considerations based on the COVID-19 pandemic.
Access the Easy Read Health Care Standards Final Report or Health Care Standards Final Recommendations Report.
The recommendations in the full report address the following subjects:
- the need for an accessibility lead/consultant at each hospital
- engagement with persons with disabilities in hospital accessibility planning and design
- procurement of services and equipment, and consideration of the design of public spaces/built environment to ensure accessibility
- access to accessibility equipment
- funding for accessibility and accommodations for hospitals
- documenting and sharing an individual’s accessibility accommodations in hospital
- accessible and inclusive person-centred care philosophy: support for persons with disabilities including accommodations
- effective patient-provider communication in all health care services, and provision of informed consent
- access to third-party supports for people with disabilities
- development of mandatory education for health care providers and other health care workers or related staff
- mandatory core competencies
- implementation of education and training in hospitals
- education and training for regulated health care professionals
- hospital declaration of values
- patient relations and complaints process
- independent accreditation for putting accessibility policies into practice
- compliance enforcement
- enforcement strategy and framework – hospital accessibility standards
- public education and outreach
- access to health services for persons with disabilities during a declared provincial emergency
Now that you have read through the Canadian context, watch this video by disability studies professor Dr. Aimi Hamraie. This video discusses the American context, so it is interesting to attend to the differences between the two nations. We would advise reading through the module and then coming back to this video as a way to review some of the material presented in the previous modules and to think about how accommodation and access plays out in people’s everyday lives.
Watch the following video here, access it at the link below, or the transcript.
One or more interactive elements has been excluded from this version of the text. You can view them online here: https://pressbooks.library.torontomu.ca/accessiblehealthcare/?p=437#oembed-1
Aimi Hamraie on “Making Access Critical: Disability, Race, and Gender in Environmental Design”
Video Transcript
Gaps in Service and Rights Unfulfilled
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Basic Situation
According to the Canadian Institute for Health Information (CIHI), most Ontarians have a regular health care provider (90.6% compared with 85.6% nationally). However, in 2019-2020, only four in ten people in Canada (41%) were able to see their doctor on the same day they needed service (compared with 76% in Germany, 71% in the Netherlands, and 52% in the United States). In Canada, poorer women are considerably less likely to have a family doctor than wealthy women (82% vs 92%, respectively), as are poorer versus wealthier men (73% vs 86%) (Canadian Institute for Health Information, 2024). Unfortunately, similar details are not available by Indigeneity, racialization, or disability. However, it is well established that people with disabilities are more likely than people without disabilities to be living below the poverty line. See, for example, Wall (2017) and details on working-aged people (15 to 64 years) from Statistics Canada.
The Canadian Senate (e.g., 2002), Parliamentary Standing Committee (e.g., 2018), private members of the Canadian Parliament, and individual court cases have pointed out many gaps between what the CHA covers and the health-related items and services people need. Tiedemann (2019) provides a helpful overview of some of the more recent controversies. The criticisms of the CHA tend to boil down to a range of system features that result in barriers to timely, equal access to insured health care services.
Billing
It was recently reported that a general practitioner in Ontario is typically paid $37.95 for the most commonly billed patient visit (Crawley, 2024). McColl et al. (2010) have identified that the basis of payment for physicians tends to result in them according less financial value to people with disabilities than others. For example, a patient with a complex health profile may require more time on average than others from a family physician. It may seem to make more financial sense to a doctor to attend to more patients who require relatively little time than fewer people who require more time.
Other Delivery Arrangements
Many disabled people have a heightened need for healthcare services because of the nature of their condition (e.g., a person who requires regular kidney dialysis). Other people, however, need goods or services from the health care system mainly because these are delivered through that system rather than through social services or some other system. For example, publicly funded wheelchairs and hearing aids are delivered through Ontario’s Assistive Devices Program (ADP), which is operated by the Ministry of Health and Long-Term Care. In contrast, publicly funded wheelchairs in New Brunswick are provided through that province’s Disability Supports Program, which operates under the department of Social Development.
Some people experience needs for health-related goods or services that are not covered by the publicly funded health system. For instance, the CHA provides federal funds to help cover provincial costs for hospital services, physician services, and surgical-dental services provided to insured persons. The CHA, however, does not cover costs for community-based chiropractors, physiotherapists, psychologists, or speech therapists, to list only a few of the exclusions (e.g., Canada Life, 2022). Similarly, decisions were taken in Ontario for the ADP not to cover the costs of many disability-related items that include, among others, several types of mobility devices and several types of orthotic braces, compression garments, and lymphedema pumps (Ontario. Assistive Devices Program, 2024).
Sometimes provincial health care systems only partially cover costs. The ADP, for instance, fully covers the cost of eligible items for people who receive financial support from Ontario Works, the Ontario Disability Support Program, and the Assistance for Children with Severe Disabilities program. For other Ontarians, the ADP will cover 75% of eligible costs and the user is expected to cover the other 25%. If a person has only a part-time or low-paying job, the 25% may be difficult to afford.
Despite public coverage of some costs under the ADP, many people with disabilities face significant costs. These include, for instance, costs of various items and services not covered by the ADP, such as chair lifts, ramps, home renovations for greater accessibility, and repairs to aids and devices. Overall, four in ten (40.7%) adults with disabilities (15 years and older) in Canada have one or more unmet need for assistive aids, devices, or technologies, prescription medication, or health care therapies and services. High cost is the leading reason why so many have unmet needs. Those in greatest need tend to have more complex/severe levels of disability, to be women, and to live in poverty (Hebert et al., 2024). While Statistics Canada has not developed recent estimates, average unreimbursed costs for disability-related health and related services ranged between $550 and $760 in 2010 for people with less severe and more severe levels of disability, respectively, or from about $760 to $1,060 in 2024 dollars (Human Resources and Skills Development Canada, 2011: Chart 2.3). Costs of some services, however, such as assistance with everyday activities for wheelchair users, can be considerably higher (Giesbrecht et al., 2017: Figure 2).
Healthcare as a Gateway to Other Services
Health and health-related professionals are in a real sense gatekeepers to many other systems, programs, and benefits. This is because many systems are still based on a medical model of disability. For instance, physician referral is usually required to access publicly insured non-emergency health care services. Access to the ADP requires a valid Ontario Health Card. Medical assessment is required to access the Canada Pension Plan Disability benefit (Service Canada, 2024) and medical assessment of disability for the Disability Tax Credit will be required to access the Canada Disability Benefit (Canada, 2024: Section 2). Education programs often require a formal assessment of learning disability by a licensed psychologist for a student to obtain learning-related support services.
Not everyone can obtain the medical or other assessment they need so they can qualify for disability-related services. For instance, smaller communities may lack general practitioners who are able or willing to provide the assessments, and the practitioners who are available and willing do not always provide well-informed service (Crawford et al., 2022). The cost of psychological assessment is not covered under Ontario’s insured health care system, and obtaining a no-charge assessment through the education system often involves a long wait list (Learning Disabilities Association of Ontario, 2024). All such assessment fees can be difficult for people on low fixed incomes to afford, who often stand in comparatively greater need of health-related services for disability (Hébert et al., 2024). Historically, high cost and the lack of insurance coverage are the leading reasons why people with disabilities lack the health-related services they require (e.g., Canada, 2010). People with disabilities are considerably more likely than others to live in poverty and are more likely than those not living in poverty to experience affordability issues (e.g., Hébert et al., 2024; Wall, 2017). Regardless of income, half of Canadians lack any insurance coverage for disability from employer-based or private plans (Investment Executive, 2019).
Standards of Practice
In addition to the issues discussed above, health care professionals have been criticized for disrespectful and inappropriate treatment of people with disabilities, and even for outright refusal to provide service. These are global problems (Gréaux et al., 2023; Hashemi et al., 2022; World Health Organization, 2022). They play out in affluent countries such as the United States (e.g., Lagu et al., 2022; Mulcahy et al., 2022) and have been longstanding problems in Canada (e.g., McColl et al., 2010) – especially across lines of Indigeneity and racialization, although the issue as it affects newcomers with disabilities to Canada is under-researched (e.g., Chadha, 2020; Chowdhury et al., 2021). Wealthy provinces such as Ontario are not exempt (e.g., Baiden et al., 2014; Brown et al., 2024), and neither are poorer provinces (e.g., Saint John Human Development Council, 2021).
Access the Easy Read Version, Executive Summary and Full Report: Equity and inclusion in pregnancy care: report on the pregnancy outcomes and health care experiences of people with disabilities in Ontario.
Rights Often Unfulfilled
Despite all the human rights protections in law, disability is consistently the most frequent ground for the cases of discrimination that are brought before human rights commissions at the federal and provincial/territorial levels in Canada – more than 40% of all cases in most jurisdictions (Canadian Human Rights Commission, 2015: Table 1) and over 50% in Ontario as of April-June 2024 (Human Rights Tribunal of Ontario [HRTO], 2024a). While the number of cases of discrimination in health care is not publicly reported, a quarter of all discrimination cases before the HRTO are about discrimination in the provision of goods, services, or facilities (HRTO, 2024b). Many of the decisions reached by the Tribunal involve health care providers as respondents (defendants) (e.g., hospitals, health foundations, physician services, medical associations, etc. – HRTO, 2024c).
When Things Go Badly
Many people with disabilities do manage to obtain the health care services they need. This can include referral from a family physician who astutely recognizes the need for more in-depth assessment of a potentially life-threatening condition, to complex surgery that can make the difference between life and death. However, many people do not receive the services they need from the health care system. Listen to the following two podcasts and consider how medical assistance in dying (MAiD) is the only alternative when disabled people do not get appropriate referral or cannot access needed services.
Here’s a link to an excellent rights-focused interview with Gabriel Peters, a disabled woman and activist. Access the following podcast or transcript about MAiD as ever-lurking in the background of the health care decisions of people with disabilities. She describes some of the pressures they experience to “choose” MAiD when the insured health care system fails to properly address their needs.
Access the following podcast or transcript about the “perfect storm” that can happen when medical diagnosis cannot be obtained as a gateway to other health care services and when the other needed health care services are not insured, too expensive, or simply not provided in Canada. It is the first story in the program.
Notable Human Rights Cases on Disability in Health Care
A court case that some (e.g., Chadha & Rogers, 2023; Malhotra, 2012) consider an important victory for the social model of disability, and which was undoubtedly a landmark for people with disabilities in their dealings with provincial/territorial health care systems, is the case of Eldridge v. British Columbia (1997). At issue was the lack of sign language provision to Deaf patients at a hospital in Vancouver. The Supreme Court of Canada ruled that the province of British Columbia’s failure to fund interpreters for Deaf people to access the province’s insured health care services violated the rights of the appellants (Robin Susan Eldridge, John Henry Warren, and Linda Jane Warren). In the absence of an interpreter, Ms. Eldridge and her specialist found they could not communicate effectively about the surgery she had to undergo. Linda Warren testified that, in the absence of an interpreter, which the Warrens could not afford, the birth of their twins and the birth’s aftermath were difficult to understand and frightening. Her physician provided further details about the risks of inadequate communication between doctor and patient during childbirth. Section 15(1) of the Charter guarantees equality before the law and equal protection of the law. In the words of the Supreme Court of Canada:
The failure of the Medical Services Commission and hospitals to provide sign language interpretation where it is necessary for effective communication constitutes a prima facie violation of the s. 15(1) rights of Deaf persons. This failure denies them [Eldridge and the Warrens] the equal benefit of the law and discriminates against them in comparison with hearing persons… The appellants ask only for equal access to services that are available to all… The government has not made a “reasonable accommodation” of the appellants’ disability nor has it accommodated the appellants’ need to the point of undue hardship.
The Supreme Court ruled that the Government of British Columbia must administer its health care system in a manner consistent with the Charter.
In this context, the interpreter service was an essential means of obtaining equal access to, participating in, and benefiting from the health care services available to other British Columbians. Ensuring such equality and addressing historical disadvantage meant providing a dimension of service that was somewhat different than what most other residents of the province would need (Chadha & Rogers, 2023; Eldridge, 1997, para. 79). The Canadian Association of the Deaf, Canadian Hearing Society, and Council of Canadians with Disabilities participated as interveners and presented a Factum in this successful case (n.d.), as did the DisAbled Women’s Network Canada (DAWN) and the Women’s Legal Education and Action Fund (LEAF, n.d.). Chadha and Rogers (2023) attribute some of the gains of the Eldridge case for people with benefits to the engagement of these interveners.
Here’s some follow-up recommendations to Eldridge: Health Care – Canadian Association of the Deaf.
Concluding Thoughts
Despite the gains resulting from Eldridge described above, Chandra and Rogers (2023), in their legal analysis of disability rights case law since that victory, conclude that “disability progress has stalled” (p. 250). The authors marshal much evidence in support of their view, including that the Supreme Court has recently problematized disability rather than upholding the duty to accommodate and the idea that disabled people are not responsible for their marginalization. It remains to be seen whether the AODA‘s new Standard for health care and the continued efforts of individuals with disabilities and their organizations, along with supportive professionals and other allies, will be enough to avert the widespread demeaning, devaluing, and even ridiculing of people with disabilities that the authors see emerging. Meanwhile, the most recent Independent Review of the AODA by Rich Donovan prioritized as critically urgent a range of recommendations for health care (Donovan, 2023). Donovan and many of the people he interviewed concluded that the AODA is failing people with disabilities and is a “missed opportunity” (p. 9) because the outcomes have been poor, and enforcement, data, research, leadership, and accountability have been lacking. It remains to be seen how the new standard for health care will address these issues.
Works Cited
Chadha, E., & Rogers, E. (2023). Does the Supreme Court of Canada give a “freak” about disability dignity?: The inclusion fallacy 25 years after Eldridge. The Supreme Court Law Review: Osgoode’s Annual Constitutional Cases Conference, 108. https://doi.org/10.60082/2563-8505.1442
Tarasoff, L. A., Saeed, G., Lunsky, Y., Welsh, K., Proulx, L., Havercamp, S. M., Parish, S. L., & Brown, H. K. (2023). Prenatal care experiences of childbearing people with disabilities in Ontario, Canada. Journal of Obstetric, Gynecologic & Neonatal Nursing, 52(3), 235–247. https://doi.org/10.1016/j.jogn.2023.01.006
Jodoin, S., Buettgen, A., Groce, N., Gurung, P., Kaiser, C., Kett, M., Keogh, M., Macanawai, S. S., Muñoz, Y., Powaseu, I., & Stein, M. A. (2023). Nothing about us without us: The urgent need for disability-inclusive climate research. PLOS Climate, 2(3), 1–3. https://doi.org/10.1371/journal.pclm.0000153
McIvor, A. (2024, Sep. 19). Halifax woman asks for MAID after long fight for out-of-province care; one woman’s war secrets; and Iraq on the cusp of change. CBC. The Current. https://www.cbc.ca/listen/live-radio/1-63-the-current/clip/16095632-halifax-woman-asks-maid-long-fight-out-of-province-care
Simon, R. (2024, May 31). First Person: A disabled person in the age of MAiD. The Big Story. https://cdn.simplecast.com/audio/9cbfc35c-b8ae-496d-8562-10d911e7127c/episodes/ac34d3d6-99de-45b9-8728-795cb3d152d4/audio/21567fc7-83e9-437f-8072-3bfe46da1fe8/default_tc.mp3
Next Time…
In the next module, we’ll explore the definitions of care.
One of the ways that ideas about health are disseminated is through public health promotion. Health promotion is the effort of 
In the mapping access project, geographical information systems and crowdsourcing come together to document sites of inclusion and exclusion while critically redefining how we think about accessibility. Key to this work is centering the knowledges of those who are doing the mapping (disabled, sick, mad, Deaf, neurodiverse, trans, Black, Indigenous, and racialized people).