Message from the chair

December 2020

Welcome to a report and recommendations that I believe contribute significantly to ensuring that all persons in our diverse provincial population will have accessible health care services with a focus on hospital interactions.

The Standards Development Committee proudly submits its recommendations for submission to the Minister for Seniors and Accessibility and the Minister of Health. This report will also go out for distribution to individuals with disabilities and organizations that represent and/or advocate for people with disabilities and accessibility, and to leaders in the hospital sector and the health care sector, as well as be available to the broader population of Ontario for public input.

For the past three years I have been privileged to chair the Health Care Standards Development Committee, and this report is the outcome of deliberations on how to achieve workable solutions to identify, remove, and prevent accessibility gaps and barriers faced by persons with disabilities within hospitals and health care facilities.

The Health Care Standards Development Committee seeks to reduce, and preferably eliminate, the variety of barriers faced by persons with disabilities throughout their patient journey within hospitals and when receiving health care. The committee aims to curtail the need for persons with disabilities to fight legal cases, frequently one at a time, under the Ontario Human Rights Code or the Canadian Charter of Rights and Freedoms.

From the onset, the committee's approach included the entire health care system, rather than only hospitals. We strongly urge the broader health sector and intertwining health related sectors, including long-term care homes, outpatient rehabilitation centres, community health centres, freestanding diagnostic imaging and laboratory facilities, and medical clinics to review and apply these recommendations where applicable. COVID‑19 reinforces this call for broader impact throughout Ontario, as pointed out in the report.

The committee reviewed previous research and feedback from people with disabilities and representatives of the hospital sector, and received a variety of presentations from Ministry for Seniors and Accessibility, Ministry of Health and other staff partners and community advocates. Committee members shared insights through Learning Moments where the group taught each other about their lived experience and/or disability expertise, to better inform collective decision-making. Numerous sub-committees and sub-groups were established to assist us to utilize members’ immense range of gifts and talents in shaping our recommendations.

Throughout the process the committee integrated an equity, diversity and intersectionality lens into our work as we understood that failure to do so would result in recommendations that may not reflect the day-to-day experiences faced by people with disabilities when seeking health care. We acknowledge that unfortunately, far too great a percentage of people with disabilities live in poverty and under the poverty line. We determined that such realities must be considered when providing health care services and is a best practice that should be adopted by hospitals and health care facilities.

In society, detrimental myths, stereotypes and stigmas abound regarding persons with disabilities, which is replicated in their hospital and health care experiences, often resulting in poorer health care outcomes. Frequently, barriers faced by persons with disabilities have nothing to do with their disability but rather with erroneous assumptions being made about their health care needs and/or their intellect and capacity in decision-making. We believe this report and recommendations will help “deMYTHicize” persons with disabilities and decrease the discrimination faced by persons with disabilities seeking health care services.

We trust that our recommendations will support hospitals, health care facilities, and health care providers through consistent use of universal design; with clearly written policies, procedures and practices; ongoing, up-to-date education, training, and toolkits; and clear compliance mechanisms. Our education and training recommendations will prepare aspiring health care providers for their role in serving people with disabilities and ensure that existing health care providers have the tools to stay current in the ever-changing and growing world of disabilities and accessibility.

In celebration of the diversity of our province, this report is available in both official languages and committee members will ensure that the recommendations are shared with Ontario’s multiplicity of diverse communities, so their experiences, views, and ideas are elicited during the public feedback time-period, considered, and reflected in the final report to government. In the spirit of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP), and the Calls to Action of the Truth and Reconciliation Commission of Canada, as well as the prevalence of disabilities both on and off reserve, this outreach will include but is not limited to individuals and representatives of Indigenous Peoples, including Métis and Inuit peoples.

The committee believes changes will be seen when health care for persons with disabilities becomes a system-wide priority. The recommendations in this report support this commitment by providing actionable guidance on how to ensure accessibility and identify, remove, and prevent recurring disability barriers.

The chair acknowledges those from across the province selected to be on this committee, who are part of the health care sector and the disability communities. The committee is one of the most remarkable groups with whom I have had the pleasure to work. Members brought their extensive knowledge, expertise, life experiences, and robust views to the table where we engaged in respectful yet refreshingly unguarded discussions, listening, educating, and collegial decision-making that allowed us to explore the professionalism and realities of life as persons with disabilities and health care providers. This honesty while examining the gaps in health care resulted in comprehensive recommendations that will help move Ontario hospitals and the health care system along the path to accessibility by 2025.

It is important to note that even though there were extended timelines due to two lengthy pauses in our work and pressures of COVID‑19, the members maintained their integrity, desire for excellence and commitment to the undertaking.

Special thanks to the members who took on many extra duties as members and leads of the committees, sub-groups and work groups. I am particularly grateful for the dedication of members for not giving up during the extensive pauses and the ultimate change to virtual meetings. Particular mention goes to the members of the Hospital Technical Subcommittee and its co-leads who gave so generously of their time and expertise. You all know who you are. Many, many thanks!

Also noteworthy in their contributions were the staff supporting our work, scribing all our ideas, views and deliberations as well as ensuring alignment with related government initiatives. Some staff members came and went but each played a significant role in our reaching this stage. I strongly believe that your input will ultimately facilitate broad-based acceptance and implementation of recommendations that improve hospital encounters and health care for persons with disabilities.

And finally, as my message to persons with disabilities, I trust that we have heard you and accurately reflected your needs and perspectives; that we have generated recommendations that will support enhanced accessibility in the delivery and quality of health care in Ontario. We look forward to hearing from you with suggestions to make these recommendations even better.

Sandi Bell
Chair
Health Care Standards Development Committee

Background

Standards development and the law

The Accessibility for Ontarians with Disabilities Act, 2005 became law in 2005. Its stated goal is the creation of an accessible Ontario by 2025, through the development, implementation and enforcement of accessibility standards that apply to the public, private and not-for-profit sectors.

With the act, Ontario became the first province in Canada and one of the first places in the world to establish a specific law with a goal and timeframe for accessibility. It was also the first place to legally require accessibility reporting, and one of the first to establish accessibility standards so that persons with disabilities have equal opportunities to participate in everyday life.

The accessibility standards under the act are laws that businesses and organizations with one or more employees in Ontario must follow so they can identify, remove and prevent barriers faced by persons with disabilities. These standards are part of the act's Integrated Accessibility Standards Regulation (IASR). Currently, there are five accessibility standards that apply to key areas of day-to-day life for Ontarians. These are:

  • information and communications
  • employment
  • transportation
  • design of public spaces
  • customer service

In the second legislative review of the act, released in 2014, Mayo Moran identified health care as one of “the clearest areas of consideration for new standards.” Health care is a vital service that Ontarians rely on every day. Removing barriers in this area will help make sure every citizen can enjoy the independence and dignity they deserve when receiving health care services. The review noted that hospitals are a unique setting in that they “are serving patients with temporary or permanent disabilities at all times,” and that an accessibility standard for hospitals could adapt the more general accessibility requirements already set out in regulation into more targeted standards for a health care setting.

Mandate of the committee

The role of the Standards Development Committee for health care is to provide recommendations to government on reducing and preventing accessibility barriers in health care, focusing on the hospital sector. These recommendations would inform the government’s work on a proposed new accessibility standard for hospitals.

To develop this standard, members of the committee are required to:

  • define the long-range objective of the proposed standard
  • determine the measures, policies, practices and requirements to be implemented on or before January 1, 2025, and the timeframe for their implementation
  • develop proposed standards that the committee deems advisable for public comment (Initial Recommendations Report)
  • make such changes it considers advisable to the proposed accessibility standard based on comments received, and make recommendations to the Minister for Seniors and Accessibility and the Minister of Health (Final Recommendations Report)

The minister requested the committee specifically consider accessibility barriers in the following areas:

  • disability awareness and sensitivity when communicating with persons with disabilities
  • accountability for accessibility within the administration of health sector institutions
  • training for health care providers to accommodate persons with disabilities

Committee members

The committee is composed of 20 members, 18 of whom have the power to vote on decisions and are considered voting members. The remaining two members, who are non-voting, represent the Ministry for Seniors and Accessibility and the Ministry of Health. The ministries provide information to support the committee as it considers its proposed recommendations. Eleven of the voting members are persons with disabilities or their representatives. Members also represent a range of perspectives from health care organizations and professions.

Purpose of the initial recommendations report

This document sets out the committee’s initial recommendations for proposed updated accessibility standards for hospitals. As required under the act, the report is being made available for public comment. Following the public posting period, the committee will consider all comments received and make any changes to the proposed accessibility standards it considers advisable. Once finalized, the committee will submit its final recommendations for new proposed standards to the minister. As outlined by the act, the minister may adopt the recommendations in an amended regulation in whole, in part or with modifications.

Barriers to accessible health care in the hospital setting

Overview

To begin their work, the committee was provided with research commissioned by the Ministry for Seniors and Accessibility on health care accessibility trends, barriers and policies across the world. The ministry also provided the committee with information from in-person consultations and surveys with persons with disabilities and health care providers. The Ministry of Health provided information about Ontario’s health care system and hospitals, allowing the committee to work from a shared understanding of the sector and its opportunities and challenges.

Through each meeting, committee members worked to understand the perspective of persons with disabilities experiencing barriers to accessibility as patients, as well as the perspective of the health care providers or administrators. Committee members also shared their knowledge related to disability and health care. Through this approach, the committee’s goal was to develop recommendations enabling health care providers to offer a more accessible health care experience to persons with disabilities.

The committee’s view is that hospitals reflect society at large, and that persons with disabilities face disadvantage and discrimination if organizations are not equipped to meet accommodation requests or provide accessible service delivery. Committee members also highlighted that barriers faced by persons with disabilities are not caused by the disabilities themselves – they are caused by a society that is not inclusive and accommodating. Working towards a more inclusive society removes those barriers and allows everyone, with or without disabilities, to participate on an equal footing.

Through the course of their meetings, the committee identified three major categories of barriers faced by persons with disabilities in a hospital setting:

  • administration and accountability
  • communication
  • education and training

These categories, along with specific barriers, are discussed in greater depth in this section. The committee emphasized throughout their work that barriers to accessibility are interconnected and overlap with one another.

This means that barriers can reinforce each other, making it difficult to isolate both barriers and solutions. For example, a lack of awareness of disability and accessibility on the part of a health care provider (often caused by a lack of education) can lead to persons with disabilities facing additional barriers. This section provides an overview of the committee’s discussions aimed at identifying barriers to accessibility in hospitals.

Administration and accountability

Administration and accountability refers to the overall oversight and management (administration and governance) of health service delivery in the hospital and includes how a hospital structures, processes and coordinates health services. This can include the role of senior leadership in ensuring that standards are met, as well as mechanisms for patient referral, intake and appointment scheduling, and the provision of accommodations at these points of access.

Health services can be complicated to navigate independently. Some persons with disabilities may require accommodation and accessibility supports, which have not been factored into health systems. Examples can include simple supports, such as offering to make appointments by alternate formats such as email for people who cannot use telephones, ensuring patients have access to their communication systems at all times, or giving extra time for an appointment to discuss health care concerns. Failure to ensure that these accommodations and supports are in place may result in a lack of access to essential health care services for persons with disabilities.

Initial committee discussions touched on the shared accountability by all health care staff for different elements of accessibility and accommodations throughout a hospital, where accountability for patient accommodation rests, and how patient concerns and complaints are managed and processed to ensure that persons with disabilities are free to raise concerns. Other barriers considered in this area include:

  • a lack of consideration for accessibility during procurement or health care service planning
  • gaps between policy and practice, or policies that are not consistently observed
  • a lack of engagement with persons with disabilities as part of hospital administration planning and decision-making
  • poorly coordinated care transitions and inconsistent accessibility accommodations within the hospital or as part of discharge planning

Communication-related barriers

Persons with disabilities can experience barriers in two-way communication when interacting with health care providers, which can negatively affect the quality of their health care. Members of the committee highlighted that these barriers can be particularly profound for persons with communication-related disabilities, including persons with developmental/intellectual disabilities. This can include challenges for persons with disabilities identifying and describing health concerns or symptoms, as well as challenges for health care providers effectively communicating a diagnosis or treatment plan. Related issues of privacy, consent and independent decision-making were a common theme of the committee’s discussions in this area, as persons with disabilities may require additional accommodations or supports to fully participate in their care. Other barriers discussed by the committee in this category included:

  • Persons with disabilities may not receive communication or other accommodations and supports they require because their needs are not identified or shared with other health care providers involved along the patient’s continuum of care.
  • More specifically, patients who have speech, language and communication disabilities and/or intellectual disabilities may not receive communication accommodations and supports they require because their needs are not identified, addressed, documented or shared with other health care providers involved along the patient’s continuum of care.
  • Patient choice and rights can be compromised when hospital policies about consent and capacity are not administered consistently and in a way that takes the needs of persons with disabilities into consideration. For example, a person with disabilities can have their capacity to consent misinterpreted if their capacity is assessed without appropriate communication accommodations and supports.

Education and training

Health care providers and hospital staff at all levels may lack knowledge about how to provide appropriate and sensitive accommodations during the delivery of health care services. It is the view of the committee that the formal educational curriculum and training for health care providers does not adequately address persons with disabilities and the required accommodations. Committee members discussed their view that often health care education and training is grounded in a medical model of disability. The medical model focuses on curing or alleviating perceived impairment caused by disability. In contrast, the committee preferred to work from the social and environmental model of disability, which emphasizes the importance of making society and the person’s environment more accessible and accommodating. The committee’s discussions also reflected human rights-based approaches to disability or accessibility, and the rights and obligations that flow from the Ontario Human Rights Code, the Canadian Charter of Rights and Freedoms and the United Nations Convention on the Rights of Persons with Disabilities.

The committee considered a range of barriers linked to this area, such as:

  • limited scientific knowledge about disabilities leading to limited treatment options and poorer health outcomes
  • stigma surrounding different disabilities
  • stereotypes and unconscious biases that health care providers may hold related to different disabilities, including unconscious biases stemming from systemic discrimination
  • limited statistical data related to disability in Canada
  • a lack of cultural and organizational sensitivity to disability and accessibility

Other barriers

The committee also considered additional barriers to accessibility that were derived from broad consultation with stakeholders and/or shared experiences of committee members and other opinion leaders in the disability community. Where appropriate and where it was considered to be within the committee’s mandate, additional proposed recommendations were developed to address these barriers. These barriers included:

  • poorly coordinated transitions from pediatric to adult services, or from the hospital to home and community care
  • financial barriers where additional costs are required for accommodations or other essential services
  • physical barriers to accessibility related to hospital accessibility features and amenities such as wayfinding, tracks for Hoyer lifts, bariatric aids or quiet spaces for patients
  • inadequate feedback systems, including circumstances where patients may fear repercussions to their quality of care in response to any complaints
  • barriers to employment in the hospital setting faced by persons with disabilities
  • the role of paid and unpaid support persons in patient care

Guiding principles for recommendations

Overview

Throughout committee meetings there were several guiding considerations which were recognized as essential to each recommendation and to developing a culture of accessibility that reflects Ontario’s diversity. They are set out here with the understanding that they apply to all of the committee’s work and recommendations.

Equity

Persons with disabilities are diverse and represent all ages, ethnicities, creeds, races, gender identities and gender expressions, sexual orientation, financial, family, marital status, linguistic and cultural communities. Access to equitable health care means that all individuals have access to affordable, high-quality, accessible, linguistically and culturally appropriate care in a timely manner.

The committee applied an intersectional equity lens in all its discussions and recommendations, meaning that they considered the impact of accessibility barriers and proposed recommendations on persons with disabilities who may experience additional barriers based on gender, race, ethnicity, language or other aspects of their intersecting identities. Throughout their discussions, committee members took into consideration the full range of needs of different persons with disabilities while working to maximize their full and effective participation as patients.

Independence and dignity

Health care is a vital service. Removing, reducing and preventing barriers will help ensure every person can be confident that their fundamental independence and dignity are respected when receiving health care in hospitals. The committee recognizes that the independence of patients with disabilities should be prioritized in health care settings, and that the dignity of persons with disabilities should be inherent and equal to any other patient. The committee was also informed by the principles of independent living which are focused on equal opportunities, self-determination and self-respect.

Respect for an individual’s abilities

In respecting an individual’s abilities, the committee’s work took a strengths-based approach. This approach recognizes that the rights of persons with disabilities to individualized accommodations based on their needs, including the right to make informed decisions about one’s health care and treatment options, are central and essential to their participation in health care services and decisions.

Ontario Human Rights Code (the code), the Canadian Charter of Rights and Freedoms (the charter), and the United Nations Convention on the Rights of Persons with Disabilities (UN convention)

The committee emphasized through its discussions that accessibility is no longer left up to the good will of society, but is enshrined in law at all levels. Members took vital guidance from the code, the charter, the UN convention and Ontario accessibility standards while developing their proposed recommendation. Recommendations were drafted based on a broad and inclusive interpretation of equity rights legislation and the code’s definition of disability. This means that disability is inherently diverse, and can be self-identified, chronic or intermittent, visible or non-visible and can be acquired or can have genetic origin. This is in keeping with the Human Rights Tribunal of Ontario and the Supreme Court of Canada which have recognized and reaffirmed on multiple occasions that statutes and terms that convey rights are to be given a broad, generous and liberal legal interpretation.

Dimensions of patient care – patient-centred care

The committee took into consideration the six dimensions of care developed by Health Quality Ontario in their discussions and recommendations. These highlight that patient care and medical treatment in the health care sector must be safe, effective, patient-centred, efficient, timely and equitable.

The committee felt these dimensions of patient-centred care provided guiding principles to keep in mind when drafting recommendations. Members noted as well that these principles have been largely endorsed by the hospital community. The goal of patient-centred care is for every individual, including persons with disabilities, their families and caregivers, to be treated with respect, dignity and consideration for their individual needs in all health care interactions.

Intersectionality and the social determinants of health

Like other equity-seeking groups, persons with disabilities are not homogeneous as they come from all socio-economic strata, ethnic and language groups, races, sexual identities and geographic locations.

There are various factors that impact one’s hospital experience and health outcomes:

Intersectionality refers to the connections and overlaps of social identities such as race, gender, class, sexuality (Lesbian, Gay, Bisexual, Transgender, Queer, Two-Spirit, or LGBTQ2S+) and disability that combine to create unique experiences of discrimination or privilege.

Social determinants of health, as defined by the National Collaborating Centre for Determinants of Health, are the social, political and economic factors that create the circumstances in which people live. Many persons with disabilities have multiple social identities which can impact their health outcomes. The committee believes that health care should be designed to take into consideration the whole person, at all intersections of identity.

These determinants are intrinsically interrelated, and they include, but are not limited to:

  • gender/gender identity
  • race, racialization, ethnicity, language, mother tongue
  • Indigeneity, colonization
  • disability (both congenital and acquired, visible and non-visible)
  • access to health services
  • religion, culture, discrimination, social exclusion, social inclusion
  • education, literacy, health literacy, occupation, working conditions
  • income, income security, social protection

The committee recognizes that the intersection of the social determinants of health causes these circumstances to shift and change over time and across one’s life span, impacting the health of individuals, groups and communities in different ways.

Generally, social inequities tend to be reflected in health disparities. This reality was a key consideration in the development of these recommendations and throughout the meetings and discussions.

Access to French language services

The French Language Services Act (FLSA) guarantees an individual’s right to receive services in French from Government of Ontario ministries and agencies in 26 designated areas. The Francophone community comprises more than 622,000 Franco-Ontarians with some communities reaching higher than 80 per cent of the total population. Across Ontario, many hospitals are designated under the FLSA and therefore have an obligation to offer French language services. Many other hospitals in the province are working towards their designation as agencies offering French language services.

Research shows that French language services improves access, ensures quality of service and leads to better satisfaction of patients. A Francophone health care professional treating a Francophone will more easily understand the patient and as a result be more efficient as they are better able to diagnose, treat and convey critical health information. Moreover, people requiring a visit to the hospital are already in a vulnerable state that is heightened when they can’t communicate their needs or understand the information given to them by their health care provider. This vulnerability is again increased when the Francophone patient is also a person with a disability and they do not have access to French language services.

It is, therefore, very important to consider the impact a language barrier has on the quality and safety of care for persons with a disability being treated in hospitals and in all health care settings.

COVID-19 reflection

Following the onset of the COVID‑19 pandemic in Spring 2020, the committee shifted to virtual meetings to continue its work. The committee held a meeting in June 2020, as well as subsequent small group meetings, to reflect on members’ individual experiences of the pandemic and to consider its ongoing impacts. This section reflects those insights.

The impact of the COVID‑19 pandemic on individuals and communities is unprecedented. The committee noted the personal and professional toll on many committee members, including as persons with disabilities, as family members or family caregivers of persons with disabilities, and as health care professionals working to respond to the impact of the pandemic in hospitals.

The committee met on June 9 to:

  • consider and discuss how the pandemic may influence their recommendations for accessibility in hospitals
  • share personal and professional experiences and insights

The outcome was agreement on reviewing each recommendation with a “stress test” or pandemic lens to determine the extent to which the recommendations could withstand the challenges of the COVID‑19 pandemic or a similar type of wide-spread health emergency. This led to the identification of the following observations, barriers and solutions for persons with disabilities over the course of the pandemic to date.

Future considerations

The COVID‑19 pandemic is one type of emergency that can happen. The four different categories of states of emergency are:

  • public welfare (natural disasters, disease)
  • public order (civil unrest)
  • international emergencies (such as the COVID‑19 pandemic)
  • war emergencies

The COVID‑19 pandemic shows that there must be plans that will ensure the provision of health care during such declarations, and that these plans should reflect the needs of all persons, including the most vulnerable populations including persons with disabilities, seniors and marginalized communities. Members expressed that all current emergency preparedness plans, such as those maintained by hospitals and municipalities, should be reviewed to ensure that the needs of persons with disabilities have been identified and considered.

The committee strongly recommends to government that more is expected of them during a state of emergency when it comes to the continuity of health care for persons with disabilities, including province-wide directives to utilize clear masks and ensuring no restrictions are in place for persons with disabilities requiring the accompaniment of a support person or service animal when accessing health care.

As part of the development of this initial report, the committee paused to consider how its draft recommendations could withstand the stresses imposed by the COVID‑19 pandemic or other emergency situations. The committee welcomes input and suggestions from all stakeholders on all its recommendations that will provide better access to health care for persons with disabilities during a state of emergency.

Communication

The COVID‑19 pandemic has highlighted specific communication access issues for people who are Deaf, deafened or hard of hearing and people who have speech, language, communication and/or developmental or intellectual disabilities. While some of these issues are beyond the scope of work of the committee, members felt it valuable to highlight broader issues with communication during the pandemic. These include:

  • The need to develop strategies to ensure effective communication despite the requirement for health care providers to wear masks at all times. Members of the committee emphasized the need for accessible masks or face coverings for improved communication. One such example is a fabric mask with clear inserts to provide a visible window to the wearer’s mouth for lip-reading, as well as for the emotional and communication benefits of seeing the person behind the mask.
    • Members also stated that clear masks (both surgical masks as well as non-medical face coverings) should become more available through the supply chain for wider use. The government could encourage manufacturers to make a purpose-built mask which is clear, provides virus protection and does not react to condensation (stays clear).
    • Early requirements for face coverings outside hospital settings in Ontario were left to municipalities, which created confusion and inconsistency. Government could take a leadership stand by setting a standard and providing guidance on mandatory face coverings.
    • More leadership is required on government standards for health care communication. While American Sign Language (ASL) seems to be in place for government announcements and updates during the pandemic, there have not been other ways of making this health care information accessible. In addition, persons with disabilities who use Quebec Sign Language or Langue des signes du Québec (LSQ) face an additional barrier to accessing this information.
    • In particular, there should be a standard set for crucial emergency information to be live captioned by accredited steno captioners rather than reliance on auto-generated captioning which is not as accurate.
  • The broader population would benefit from accessible information which is also referred to as ‘easy read’ or ‘plain language’ information. This approach to information includes the use of clear, concise language and plain-language text versions, which is often supported with pictures or graphics.
  • Accessible information should be made available for people with cognitive and developmental/intellectual disabilities who specifically need this information in supporting the prevention of community spread of COVID‑19 in group settings.
  • Many persons with disabilities cannot afford digital technologies and/or have difficulty in finding accessible websites for critical information or may for other reasons not receive the information from government. Accessible websites and communication are particularly important during the pandemic as many persons with disabilities are left behind if they don’t receive or understand government communication.
  • Information-sharing protocols with respect to receiving health care during the pandemic should also be targeted for persons with disabilities. For example, publicly available information could identify which health care sites are open or not open and their level of accessibility. This information is particularly relevant considering that hospitals are a hub for health care (such as outpatient clinics and physiotherapy).
  • Committee members reported learning of cases of patients with and without COVID‑19 who were denied access to essential support person(s) to assist with communication and/or treatment decision-making and, in some cases, access to personal communication aids. Similarly, members reported that health care providers lacked resources to guide them in identifying, providing and documenting communication accommodations and supports required by patients with significant speech and language disabilities.
  • Patients with acquired communication disabilities due to intubation, ventilation and other medical interventions lacked access to communication supports to assist them communicating about their health care, health care decisions and with family members.

Triage protocols

  • COVID‑19 testing centres have been set up without apparent prioritizing of accommodation of persons with disabilities and seniors.
  • Additionally, members have reported hearing of instances whereby policies accommodating service animals have been sidelined as a precaution on infection control.
  • Triage protocols for Ontario hospitals need improvement. Members stated there was a media focus on the disadvantages and negative impacts on persons with disabilities with respect to triage protocols, and raised concerns about potential discrimination against persons with disabilities. Members also noted the eventual involvement by the Ontario Human Rights Commission.
  • There remains a need for a triage protocol which reflects Ontario, is made in Ontario and is developed from a social and disability perspective rather than a medical model. The current triage protocol applies a frailty scale to a population for which it was not designed. This calls for a review of the protocol.

Hospital intake and discharge

  • A member has observed that with increased intubation (which can occur as a result of COVID‑19 treatment), there are more people presenting with swallowing disorders. The member expressed concern that given infection prevention and control concerns, there may be a reluctance among health care providers to use needed diagnostic equipment due to nose and mouth secretions. There may be a need to use new diagnostic tools or adaptations for pandemic-like conditions.
  • Committee members pointed out that unforeseen challenges were identified for individuals who sustained a newly acquired neuro-trauma during the pandemic. For example, onboarding of persons with traumatic injuries to inpatient rehab was very challenging as the focus of hospitals was to get patients vulnerable to COVID‑19 out of high-risk hospital settings as quickly as possible. A member pointed out that some agencies may have experienced uncertainty about whether they were considered to be an essential service and allowed to operate in the early stages of the pandemic, creating additional challenges for patients trying to access rehabilitation or similar services.
  • Members identified some lessons learned for hospital intake and discharge:
    • In advance of future pandemic or emergency situations, government services need to be in place, in order to get people discharged safely and independently to their homes. Examples include programs such as the Assistive Devices Program (ADP) and financial supports such as Canada Pension Plan disability benefits or Ontario Disability Support Program (ODSP) benefits. Ensuring access to supports was identified as a challenge, and was linked to system-wide slow-downs keeping patients in hospitals longer than necessary during the early days of the pandemic.
    • With respect to hospital discharges, members stated that, from their knowledge, in many cases the required level of care is not available at home. An accessible service delivery model for discharge planning must connect community services and programs to hospitals. Guidelines for discharge could be incorporated into best practices for accessible hospital care.
    • For older adults and seniors who require long-term care, and for people with developmental/intellectual disabilities requiring supportive housing, there may be a backlog in hospitals as these people wait for available spaces.

Transportation and rural considerations

Access to medical care requires access to safe and reliable transportation. The COVID‑19 pandemic has decreased options for transportation to medical care, especially in rural areas. Members also expressed concern about potential exposure risk in shared para-transit vehicles.

Broader community concerns and mental health

Committee members identified the depth of hardship, fear and sadness people in the disability community face during the pandemic. Persons with disabilities fear contracting COVID‑19 in congregate or group living settings, fear isolation due to the pandemic and fear having to be hospitalized due to COVID‑19. The pandemic has presented life and death situations and vulnerabilities that weigh heavily on people affected, specifically persons with disabilities and their families.

Related barriers to accessibility

  • The no-visitation policy for loved ones living in congregate settings, long-term care homes and hospitals caused trauma in the community of people with developmental/intellectual disabilities. The traumatic effects and impact on individuals may not be well understood outside of the disability community.
  • Visitors for persons with disabilities should be considered essential during the pandemic, as they provide crucial supports and communication functions, including providing necessary information and providing supported or substitute decision-making functions.
  • The COVID‑19 pandemic has highlighted clear inequitable divisions – those who can stay relatively safe and those who are more vulnerable (that is, due to complex care needs, reliance on hands-on services or greater reliance on services that have been interrupted).
  • The shift to online delivery of health care, including mental health services, was not accessible for many persons with disabilities.

Inaccessibility of services and emergency measures

Persons with disabilities require government to do more to support the accessibility of emergency measures for the safety and prevention of the spread of COVID‑19. The committee noted how the pandemic highlighted the inaccessibility of many services and highlighted a number of issues, such as:

  • the need for government to develop accessibility guidelines for service delivery during a pandemic (home care, shopping for necessities, delivery services)
  • the need for government to use a disability lens in the development of emergency measures so that persons with disabilities are not left out of emergency planning
  • the importance of continuing oral care during the pandemic
  • the need to follow up on how Ontario responded at a provincial level to the accessible emergency measures developed by the federal government for the pandemic

Data collection

Government could measure the inequities and disproportionate effects realized as a result of the pandemic on populations of persons with disabilities, seniors and other identifiable groups to include, but not be limited to: Black people, Indigenous people, and people from racialized communities, and people with developmental/intellectual disabilities living in congregate/group environments. This information should be used to support program delivery and service planning, in light of the more severe impact of the pandemic on these communities.

Poverty

  • Government should consider affordability for persons with disabilities to stay safe and healthy during the pandemic (that is, the costs of personal protective equipment). In addition, affordability should be considered for Ontario Disability Support Program (ODSP) recipients who may face clawbacks on pandemic-related financial benefits yet face additional expenses.
  • ODSP recipients who continue to receive cheques could receive useful information in accessible formats regarding the continuation of their health care during the pandemic.
  • Persons with disabilities may not have computers or internet connection needed to get reliable emergency and safety information. Costs related to online support and information can be a barrier, as can costs related to other means of accessing support and information such as printing materials or telephone expenses.

Vision and long-term objective of the health care standard

Context

The act requires Standards Development Committees to establish long-term objectives to inform the development of accessibility standards. The establishment of long-term objectives at the beginning of the standards development process helps guide and inform Standards Development Committees in determining which accessibility requirements will help achieve the identified goals. Long-term objectives summarize the intended outcome of the standards and are subject to review together with the final standard under the act.

The Standards Development Committee felt it was important to have a long-term objective that emphasizes the diversity of persons with disabilities in the health care system and to have a system that embraces accommodation and equity in all services.

Initial proposed long-term objective

Fair, rights-based accessibility policies and practices that are measurable, enforceable and result in barrier-free hospitals and health care that embraces accommodation as well as an equity and diversity lens for all Ontarians with disabilities.

Towards hospital and health care accessibility

Members of the Standards Development Committee proposed the following vision for an accessible health care system:

Our vision for hospital and health care accessibility relates to persons with disabilities and, when needed, their families and support persons and provides that these individuals:

  • receive and fully benefit from the health services which are available and which they require
  • are informed of what services are available and how and where to access them in prompt, current and user-friendly information in suitable formats

In addition, the vision provides that institutions and decision makers:

  • design and operate accessible facilities using the principles of universal design, taking into consideration accessible public transit routes and sufficient accessible parking
  • provide health care workers with information on how to communicate with persons with disabilities and how to identify and accommodate their needs
  • provide health care workers with information on how to identify, provide and document communication accommodations and supports for patients who have disabilities that affect their communication
  • provide health care workers with the necessary resources and monitor to ensure appropriate implementation
  • design and operate accessible diagnostic and treatment health care products
  • eliminate any policy or procedural barriers to effective accommodation
  • design strategies, services and facilities that include accommodation for persons with disabilities
  • ensure persons with disabilities and their families are made aware of the complaint mechanism that has no reprisals
  • hire persons with disabilities to provide health care services in hospitals and health care facilities
  • ensure that current, ongoing education and training is provided to all health care providers

Initial recommendations

Overview

Through their discussions, the committee highlighted the intersecting and overlapping nature of disabilities and accessibility barriers. Similarly, members expressed that the proposed recommendations are intended to reinforce each other and work together to remove and prevent barriers to accessibility throughout hospitals.

The committee also highlighted that many of these proposed recommendations could apply to other health care settings and should be carefully reviewed by health care providers and administrators outside hospital settings for best practices or new approaches. The committee’s view is that accessibility standards for health care are needed throughout the health care continuum, not only in hospitals. As a result, the committee proposes that all recommendations included here should apply, with revisions as needed, to public and private health care facilities other than hospitals. This would include long-term care homes, rehabilitation centres, community health centres, vendors, freestanding diagnostic imaging and laboratory facilities and medical clinics. It is also important to note that recommendations are intended for all hospitals in the province, regardless of size or number of beds. Implementation should be staggered, taking into account the size of the hospital. This approach recognizes that smaller hospitals may have fewer resources and may require more time to implement standards.

Where recommendations refer to health care providers, the committee’s intent is to broadly describe all workers responsible in any way to the delivery of health care services in a hospital. This can include health care professionals from regulated health professions, contract professionals, other hospital workers, volunteers and third-party providers.

Recommendation 1: accessibility planning and engagement with persons with disabilities

The committee proposes the following recommendation:

  1. Senior executive leadership of the hospital and/or boards shall ensure there is a formal mechanism to engage with persons and organizations that represent people with a broad range of disabilities regarding health service planning, quality improvement and capital planning, and shall make information regarding this mechanism available to persons with disabilities.
  2. Senior executive leadership of the hospital and/or boards shall approve multi-year accessibility plans.
  3. Hospital quality committees shall consider the needs of persons with disabilities during the development of the hospital’s strategic plan and quality improvement planning.

Timeline:

Within one year.

Intent:

The intent of the recommendation is to put in place mechanisms to ensure accessibility is consistently considered as part of early, proactive hospital decision-making. The committee highlighted the importance of full engagement and collaboration with persons with disabilities in planning, policy development and quality improvement within hospitals.

This recommendation embeds accountability for progress at the highest level. It also allows for flexibility in developing a consultation mechanism which works for each hospital within their community and the population of persons and organizations with disabilities represented.

Recommendation 2: consultation on procurement or facilities

Preamble:

Existing hospital premises, identified hospital equipment and patient services are expected to be accessible to persons with disabilities. Hospitals are required to work with their accessibility consultation mechanism to identify Universal Design principles that will guide all procurements.

The committee proposes the following recommendation:

Hospitals shall have in place a mechanism to consult with/include the participation of accessibility specialist(s) and/or groups of individuals with disabilities on the procurement process for:

  1. the purchase of equipment
  2. service contracts
  3. extensive renovations or redevelopment projects
  4. leased space

This recommendation applies to circumstances where the equipment, service or renovation project will have a direct impact on access to health care services for patients with disabilities.

Timeline:

To be determined following public feedback.

Intent:

The committee noted that current accessibility standards already require hospitals to consider accessibility as part of procurement. The intent of this recommendation is to strengthen the current requirement and encourage a collaborative and consultative approach to incorporating accessibility into the built environment and for hospital equipment.

For this recommendation, “accessibility specialists” is intended by the committee to include persons with disabilities – who are the experts on their own needs – as well as technical or clinical experts with specialized knowledge of universal design and accessibility accommodations and supports.

The committee also expressed that consultation with accessibility specialists and persons with disabilities may lead to hospitals identifying innovative and lower-cost or no-cost approaches to accessibility. The consultation mechanism referenced in the preamble refers back to recommendation one.

Recommendation 3: access to equipment

Preamble:

Physical space, medical equipment, lack of staff support, as well as staff lack of knowledge about and where to locate assistive devices are often barriers that interfere with access to health services for patients with disabilities. The need for accommodation will not delay or prevent equitable access to timely care.

The committee proposes the following recommendation:

Hospitals shall work in collaboration with their accessibility specialist and group of individuals with lived experience of disabilities in order to ensure that mechanisms are in place to facilitate access to health services for patients with disabilities, including:

  1. additional staff resources
  2. access to an updated inventory and location of specialized equipment intended to accommodate patients with disabilities
  3. as part of the annual equipment planning process, an allocation is made for the purchase/repair/replacement of specialized equipment used to meet accessibility-related patient needs

Timeline:

To be determined following public feedback.

Intent:

The desired outcome of this recommendation is to ensure that persons with disabilities have access to all hospital equipment with assistance where required, without delaying access to timely care. This will require staff support, education and training on making hospital equipment accessible and how to use accessible equipment and any required assistive devices. The committee noted that for assistive equipment and devices that are used less frequently, hospital staff may need additional support such as annual check-ins or additional refresher training.

Recommendation 4: accommodations funding for hospitals

The committee proposes the following recommendation:

It is recommended that the Ministry of Health create a dedicated and restricted line item of expanded funding to all hospitals directed for the purchase of accessible assistive devices, supportive equipment and accommodation of support services. Hospital procurement plans are approved by Ontario Health. Purchasing approvals must be based upon the assessment of local needs and requirements and must be planned and purchased in collaboration with persons with disabilities, and the hospital accessibility committee, and identified in every hospital’s annual accessibility plan.

Timeline:

To come into effect immediately following a regulation being enacted.

Intent:

The recommendation aims to ensure dedicated funding for accessibility accommodations and supports within hospitals.

Recommendation 5: coordination of accessibility accommodations

Preamble:

Critical information related to accommodation for persons with disabilities is often not communicated when individuals are transitioned within or between health care organizations.

The committee proposes the following recommendation:

  1. Hospitals shall have policies, procedures and practices in place that address system-wide requirements that ensure that the accommodation needs of persons with disabilities are identified, recorded, shared and acted upon at each point of contact, including transitions to community care.
  2. These policies, procedures and practices must include the following requirements, at a minimum:
    1. health care providers must proactively offer persons with disabilities an opportunity to identify their individualized accommodation needs
    2. if accommodation is required by the patient, hospital shall provide this accommodation and identify it on the plan of care
    3. with patient consent, hospitals shall share information on patient accommodation requirements within hospital health services and in discharge planning

Timeline:

To be determined following public feedback.

Intent:

The desired outcome is to have more coordinated care transitions within or between hospitals, along the whole continuum of care. This includes a system of identifying, recording, sharing and acting upon the identified needs of persons with disabilities to provide coordinated care throughout all service interactions in hospitals and during discharge planning. The committee emphasized that it is important for health care providers to focus on identifying accommodation needs, rather than on the person’s specific diagnosis. They also highlighted the importance of consent and the right to self-disclosure of disability.

Recommendation 6: electronic health records

Preamble:

Persons with disabilities are often adversely impacted during medical appointments, treatment during hospital visits, and when admitted to hospital. They are frequently excluded from decision-making about their care as health care providers may be unaware of the principles of independent living, which includes the ability to examine alternatives, make informed decisions and direct their own lives.

The electronic medical record has the capacity to be formatted in a manner that can assist persons with disabilities and hospital caregivers, pending approval from the person with disability, with items such as accommodation needs.

The committee proposes the following recommendation:

It is recommended that the Ministry of Health require all hospitals in Ontario to include mandatory fields and/or information in the demographic/admission screen of the electronic health record or electronic patient record that outlines the identification and provision of accessibility accommodations and support requirements for all patients with disabilities to ensure continuity of care.

Timeline:

To come into effect immediately following a regulation being enacted.

Intent:

The intent of this recommendation is to ensure continuity of accommodations and improved information-sharing, as long as the person with disabilities consents to sharing information about their accommodation needs. The desired outcome is to better allow patients to participate in their health care decisions.

Recommendation 7: support for accommodations and patient-centred care

Preamble:

As a mechanism to build an overall organizational culture of accommodation, it is important to ground such requirements within the principles of independent living and shared accountability amongst all staff, physicians and volunteers working in hospitals. Hospitals shall ensure their policies and practices empower staff to make the necessary changes required to accommodate patient needs.

The committee proposes the following recommendation:

Advance the culture of accommodation within their person-centred care philosophy (or patient and family-centred care work) and ensure that their education reinforces practices that enable persons with disabilities to fully participate in their care. This shall ensure that sufficient time is allowed as required by persons with disabilities to be full participants in the design and delivery of their care by health care providers, including physicians, while receiving care.

Timeline:

To be determined following public feedback.

Intent:

The committee recognizes that health care providers strive to provide the best quality of service they can. The intent of this recommendation is for all health care providers to be supported by the hospital with the resources, capacity and time needed to provide their services, while fulfilling accommodation needs. The committee wanted to highlight the importance of shared accountability between all providers, as well as the need for culture change within hospitals to ensure accessibility is built into planning and implementation.

Recommendation 8: communication accommodation and respect for capacity

Preamble:

To eliminate barriers when persons with disabilities interact with health care providers in all health care situations, persons with disabilities shall be provided accommodations to improve two-way communication.

The committee proposes the following recommendation:

Hospitals shall ensure that they have both education and up-to-date policies, procedures and practices that have been implemented to ensure that:

  1. Health care providers, staff and physicians recognize, understand and respect the capacity of all persons with disabilities to be full participants in their care. When unsure, health care providers shall have access to expertise to facilitate discussions and understanding.
  2. Staff and physicians shall ensure that persons with disabilities who require supports for effective communication, shall be accommodated. This includes appropriate communication aids and authorized support persons in all face-to-face interactions and telephone communication.
  3. As required, written health care information shall be available in simplified language, and alternate formats (for example, large print, digital formats).
  4. As required, accommodations shall be provided to complete and sign forms.

Timeline:

To be determined following public feedback.

Intent:

The intent of this recommendation is for persons with disabilities to be provided with the necessary and appropriate accommodations and supports to facilitate effective communications in all health care situations. This includes the communication of health information in plain language and in alternate formats upon request, as well as support to understand information, communication aids for expressive communication, and communication assistance and/or support to make informed decisions. The committee discussed the importance of health care providers and patients working together to develop strategies that provide effective patient-provider communications while discussing the patient’s plan of care.

The committee recognized that in time-sensitive emergency medical situations, this recommendation may not apply.

Members explored the links between capacity, consent and effective, accessible two-way communication. The committee agreed that it is first important for health care providers to presume that all persons with disabilities have capacity, unless there are reasonable grounds to presume otherwise. The recommendation highlights that necessary accommodations, aids and supports must be available to facilitate effective communication and informed consent and decision-making.

Recommendation 9: access to third-party supports

Preamble:

Hospitals have a duty to accommodate persons with disabilities with supports to access hospital services and directed by the patient(s), and in cooperation with the care team when required. This includes, for example, sight/hearing support, communication, personal support services, transfers on equipment such as x-rays.

The committee proposes the following recommendation:

Hospitals shall ensure that there are policies, procedures and practices that comply with existing legislation, to provide persons with disabilities with appropriate, authorized personal support services, including unpaid supports. This includes, but is not limited to:

  1. Identify and provide the support and services that the person with disabilities may require while in hospital. This may include relying on the existing services of the person with disabilities or engaging external support services.
  2. If the person with disabilities chooses to use their own existing services, then the hospital or health care provider is required to utilize these services without impediments, including harmonizing liability issues and any staffing issues.
  3. The support person will assist the patient as directed by the patient and in consultation with health care providers.
  4. All hospitals shall have explicit policies, procedures and guidelines that enable the utilization of third-party providers to support patient care. This policy must include the requirement for all third-party providers to meet the confidentiality and privacy requirements of the hospital.
  5. Document on the care plan the support service personnel and the role they play in the provision of care, as outlined by the person with disabilities (for example, communication assistants(s), person(s) to provide input on decision making, and attendant services for personal care or other supports).
  6. If the person with disabilities does not have the communication assistance they require, the hospital shall refer to formal, qualified, independent communication support.
  7. The person with disabilities is to determine how and with whom information can be shared.

Timeline:

To come into effect immediately following a regulation being enacted.

Intent:

The intent of this recommendation is to address needed policies, procedures, practices and training for hospitals when a person with disabilities uses non-medical support services. The committee’s discussions highlighted that persons with disabilities or complex needs may prefer to use their own services due to familiarity and safety. Committee members emphasized that health care providers and support people must agree on ways to work together that are acceptable and safe for the patient.

As with other recommendations, the committee emphasized the importance of seeking the patient’s consent for all supports and accommodations and safeguarding patient privacy.

Some members expressed concerns that the recommendation as written may require hospitals to act as a broker for personal support services. Committee members recognized that this interpretation would pose significant challenges for hospitals from a range of perspectives, including liability concerns and labour relations. The committee welcomes public feedback on this issue.

Recommendation 10: effective communication and informed consent

The committee proposes the following recommendation:

Hospitals shall ensure that there are policies, procedures and practices, compliant with existing legislation, to provide persons with disabilities with the individualized accommodations and supports they require to ensure understanding of information provided, retain and weigh consequences of options, and make and communicate their decision(s). This includes policies, procedures and practices including training for all health care providers and capacity assessors in:

  1. identifying and providing communication accommodations and supports that persons with disabilities may need to communicate consent
  2. identifying and providing communication accommodations and supports that persons with disabilities may require to make decisions in consent situations
  3. ensuring that communication supports when needed, are in place and documented to assist persons with disabilities in making decisions about their health care
  4. identifying and providing formal, qualified independent communication support in situations where persons with disabilities do not have the communication accommodations and supports they require to give informed consent, including:
    1. where there is a perceived conflict of interest between the person with the disability and their support person(s) or evidence of coercion and abuse of power
    2. in high-risk situations such as medical assistance in dying

Timeline:

To be determined following public feedback.

Intent:

The intent of this recommendation is for persons with disabilities to be provided with the necessary and appropriate accommodations and supports to facilitate informed consent and effective decision-making regarding health care choices. The recommendation highlights that necessary accommodations, aids and supports must be available to facilitate effective communication and informed consent and decision-making.

Recommendation 11: development of education and training in hospitals and colleges

Preamble:

Health care providers typically receive limited education on how to provide appropriate and sensitive accommodations during the delivery of health care to persons with disabilities. Furthermore, the education and training they do receive can be outdated and from an ableist perspective.

In order for persons with disabilities to receive timely and appropriate health care, there is a need to address provider knowledge, skills and attitudes. Such education should begin early in their educational journey with mandatory training updates to ensure that the learning remains current.

The committee proposes the following recommendation:

  1. That government, in partnership with persons with disabilities and educational specialists, shall develop standardized AODA health care education and training modules to be used across all Ontario hospitals. This educational preparation will be made mandatory for all health care workers to ensure that expectations are clear and that heath care workers feel prepared to provide barrier-free care.
  2. This education must be developed for health care workers who interact with persons with disabilities at the point of care and include the core competencies outlined in recommendation 13.
  3. The educational format shall contain mandatory components with clear learning objectives, delivered as modules with associated testing components throughout (similar to workplace safety format).
  4. The curricula must be updated regularly based upon evolving knowledge, best practices, as applicable regulatory and legislative changes occur and/or a minimum of every two years.
  5. That government mandates all Regulated Health Professions Act colleges to develop, in conjunction with professional associations and education providers, continuing education on working with persons with disabilities, including attention to intersecting identities.

Timeline:

To be determined following public feedback.

Intent:

The intent of this recommendation is to ensure that health care workers are equipped with foundational knowledge for understanding disabilities and accessibility, and how to apply policies, procedures and practices. The recommendation covers staff and health care providers currently working in hospitals, as well as the next generation of health care providers completing their education and preparing for employment.

Recommendation 12: implementation of education and training in hospitals

The committee proposes the following recommendation:

  1. In addition to current training requirements under the Integrated Accessibility Standards Regulation, Ontario hospitals shall implement the government AODA health care education and training. In addition to this, hospitals may supplement this education and training to address their local needs.
  2. All Ontario hospitals shall implement this mandatory AODA health care education during hospital orientation, prior to any health care provider’s interaction with persons with disabilities at the point of care.
  3. This education shall be provided to all staff (including administration), physicians and volunteers, as well as all third parties conducting business for/within the hospital. This requirement shall be included in all contracts and/or agreements for such contractors/partners.
  4. All Ontario hospitals shall provide AODA health care education refresher training annually as part of the organizations’ core curriculum requirements. The hospital shall set a deadline for completion of the annual mandatory training for each employee. Any employee who has not completed the requirements by the deadline shall be removed from service until such training is completed.
  5. The ministry shall amend the existing accessibility compliance report attestation to include a self-report indicator related to the percentage of staff compliance with the mandatory core curriculum related to AODA health care education curriculum.

Timeline:

Recommendation to be implemented 18 months following a regulation being enacted.

Intent:

The intent of this recommendation is to outline how training for health care providers and other health care workers or related staff must be implemented in hospitals. The recommendation also establishes accountability mechanisms to ensure training is documented and reviewed or updated as needed on an ongoing basis.

Recommendation 13: training resources and core competencies

The committee proposes the following recommendation:

Government shall address the relevant topics when developing standardized AODA health care education and training modules, including but not limited to:

  1. Mechanisms to meet the requirements for an accessible Patient Relations Process under the Excellent Care for All Act (ECFAA).
  2. Wayfinding and other ways of creating a barrier-free/accessible hospital environment.
  3. Creating an accessible website with information on programs and services, as well as on the availability of alternative formats if needed.
  4. Clear print guidelines for people with low vision.
  5. Best practices for communicating with people who are hard-of-hearing, deafened and Deaf.
  6. A link to the demonstration of the accessibility compliance report with examples, scenarios, et cetera.
  7. Plain language and people-first language guidelines.
  8. Awareness and understanding about person-centred care, particularly anti-ableism education and health care accommodation required to provide accessible health care, within an anti-oppression framework respecting Indigenous peoples.
  9. Policies, procedures and practices to identify, provide and document required accessibility supports and accommodations, and how and when these accommodations were addressed (beyond existing customer service training).
  10. An awareness that there is a vast range of disabilities, among them the following: visible, non-visible, congenital, acquired, stable, intermittent, progressive, declared and undeclared.
  11. An understanding that the manner in which persons with disabilities present to health care providers is variable amongst patients who have disabilities. Many individuals can have more than one disability at the same time. Some disabilities are congenital and others acquired. Some are permanent, temporary or episodic.
  12. An understanding that every person with a disability presents with a unique profile, with its own complexities, and that identities intersect (that is, that persons with disabilities have a variety of racial, cultural, ethnic and gender identities).
  13. An understanding that there are different models or ways of understanding disability and the impact of disability on health care delivery (for example, medical model, social model, World Health Organization – International Classification of Functioning, Disability and Health, or WHO – ICF).
  14. Accommodations and supports for patients with communication and cognitive disabilities, and others who experience communication barriers, to determine capacity and provide informed consent to treatment.
  15. Familiarity with community-based services available to persons with disabilities and their linkages to health care services provided in hospital.
  16. An understanding through current, evidence-based training that health care providers have a personal responsibility to overcome attitudinal barriers, negative stereotypes and implicit bias toward persons with disabilities during the delivery of health care services to that segment of the population. Training must be available in accessible formats.
  17. Policies, procedures and practices to provide equal access to services in emergency and pandemic situations.
  18. Guidelines for working with essential third-party support persons, such as personal attendants, communication assistants and people who assist with decision-making.
  19. An understanding of relevant legislative responsibilities pertaining to health care.
  20. An understanding of current, evidence-based practices for maintaining oral care for persons with disabilities and others who are unable (temporarily or otherwise) to maintain oral care independently.
  21. An understanding that persons with disabilities can be (and are) victimized by their significant others, by other family members and by paid caregivers on whose care they might rely.

Timeline:

Recommendation to be implemented 18 months following a regulation being enacted.

Intent:

This recommendation outlines the content that should be included in accessibility training for all health care workers.

Recommendation 14: training for regulated health care professionals

Preamble:

It is acknowledged that the issue of accessibility and interacting with persons with disabilities is a key component to achieving an accessible Ontario. Jurisprudence covers all applicable legislation in the province of Ontario.

The committee proposes the following recommendation:

It is recommended that all regulatory professions under the Regulated Health Professions Act (RHPA) include in their jurisprudence/ethics component of their certificates of registration, matters pertaining to accessibility law.

The contents would include government AODA health care education and training, or a curriculum that addresses the core competencies listed in recommendation 13.

This requirement applies as well to current regulated health professionals and should be integrated into annual college membership renewal requirements.

Timeline:

Recommendation to be implemented 18 months following a regulation being enacted.

Intent:

The intent of this requirement is to require regulated health professionals to demonstrate knowledge of Ontario’s accessibility laws in order to be authorized to practice. This would apply to new entrants to regulated health professions and would not include regulated health professionals already authorized to practice.

Recommendation 15: hospital declaration of values

Preamble:

Persons with disabilities have experienced adverse responses and inaction when making a complaint and may fear reprisal, to their detriment. Therefore, individuals are often hesitant to make a complaint about health care providers or hospital services despite these existing processes. In addition, patients may be unaware of their accessibility rights or the mechanism to make a complaint, be unable to make a complaint or may not trust that their complaint will be addressed.

The committee proposes the following recommendation:

Every hospital’s declaration of values and/or patient bill of rights shall include:

  1. a commitment statement to accessibility
  2. explicit reference to the rights of patients to raise concerns and make complaints without fear of reprisal

Timeline:

To be determined following public feedback.

Intent:

The Excellent Care for All Act, 2010 requires all hospitals to establish a Patient Declaration of Values. This declaration of values must be developed in consultation with the public and must be made publicly available. The recommendation builds on this requirement and seeks to embed a commitment to accessibility and to a patient’s rights to make a complaint within that declaration of values.

Recommendation 16: accessible patient relations process

The committee proposes the following recommendation:

  1. That government amend regulation 188/15 of the Excellent Care for All Act, 2010 that requires hospitals to have a robust patient relations process. It will be amended to add that contact information must be “fully accessible and in alternate formats as requested.” The amended section would read as follows:
    "Designate an individual as their patient relations process delegate. This individual is required to oversee the hospital’s patient relations process and to present aggregate data regarding the patient relations process to the hospital’s quality committee twice annually. Hospitals must put processes and procedures in place that enable the patient relations process delegate to fulfill his/her responsibilities. Hospitals must make contact information for the patient relations process delegate publicly available, fully accessible and in alternate formats as requested."
  2. That the Patient Declaration of Values for Ontario (2018) developed by the Minister’s Patient and Family Advisory Committee (PFAC) be adopted by all Ontario hospitals and ECFAA amended accordingly.
  3. That “disability” as a ground is added to Equity and Engagement, Item One.

Timeline:

To be implemented on a three-year cycle.

Intent:

The Minister of Health’s Patient and Family Advisory Council has developed a Patient Declaration of Values for Ontario, in consultation with the public. This declaration of values is intended to reflect the values of patients and caregivers in Ontario and is not binding on hospitals or health care providers. This recommendation would require all hospitals to incorporate the values reflected there into their own declaration of values documents, including respect and dignity, empathy and compassion, accountability, transparency, and equity and engagement.

In addition, the recommendation would enhance accessibility requirements related to the patient relations process for all hospitals.

Recommendation 17: accessible complaint process

The committee proposes the following recommendation:

It is recommended that government augment current requirements for patient complaints processes in hospitals, which are currently laid out in regulation 188/15 of the Excellent Care for All Act (2015), to include the following accessibility measures:

  1. Recognize that certain accessibility and disability-related complaints are urgent, in particular in emergency or pandemic contexts, and require hospitals to establish a fast track process for urgent complaints. This could include complaints related to essential visitor designations or medical triage protocols.
  2. Require hospitals to provide alternate, accessible formats to report a complaint or concern.
  3. Require hospitals to establish a timely, effective and documented process to address a patient’s individual accessibility concerns and complaints.
  4. Require hospitals to establish a process for reviewing and updating policies, procedures and practices based on complaint patterns, and to carry out this review on a regular basis.
  5. Amend the regulation to specifically reference the right of patients to make anonymous complaints, in order to identify recurring barriers.
  6. Require hospitals to publicize the specific process by which patients can make complaints without fear of reprisal.
  7. Require hospitals to provide information to patients on the complaints and patient relations processes at a patient’s first interaction or encounter within the hospital.

Timeline:

To be determined following public feedback.

Intent:

Currently, patient relations processes and requirements related to patient complaints are regulated under the Excellent Care for All Act, 2010. This recommendation is intended to enhance the accessibility and transparency of that process. The recommendation recognizes that many patients are unaware of their options for making a complaint or raising concerns. The committee noted as well that large hospitals are also required to have a feedback mechanism under the customer service standards.

Recommendation 18: accreditation

Preamble:

The committee considered existing requirements under the Integrated Accessibility Standards Regulation and determined that these requirements were not consistently in place or applied. These requirements were determined to have high impacts on accessibility and therefore a compliance and accountability priority.

There is a gap between “policy and practice” or “principle and reality.” Accordingly, the committee has determined accreditation is an effective self-regulation tool to ensure accessibility requirements and policies are put into action.

Accreditation provides several advantages, including:

  • Accreditors meet with staff, patients and families to track them through the hospital system providing a comprehensive review that goes beyond existing compliance checks.
  • Accreditors also require evidence through documentation, visual confirmation and other potential sources of information. Accordingly, the process is verified and validated in a manner that prevents hospitals from merely producing manuals or policies for regulatory compliance.

The accreditation recommendation below is meant to build capacity for hospitals to deliver high-quality service and to comply with existing human rights and accessibility legislation, while building the confidence of the general public.

The committee proposes the following recommendation:

  1. It is recommended the government, through Ontario Health/Health Quality Ontario or the appropriate governing body, advise Accreditation Canada/CARF to amend the Leadership and Governance Standards to explicitly reference hospital/health care organization requirements related to accommodation/accessibility and the provision of services for persons with disabilities. This includes a standard statement, guidelines and a test for compliance that aligns with requirements under the Accessibility for Ontarians with Disabilities Act, 2005. These revisions to standards should be completed by 2025. This initiative shall be undertaken with the involvement of both persons with lived experience of disability and with disability organizations (“Disabled Peoples Organizations”).
  2. It is recommended the government work with all hospitals or an affiliated organization (such as the Ontario Hospital Association) to develop a Hospital AODA Compliance Toolkit and centralized repository of best practices as a resource to support hospital compliance with existing accessibility standards and new health care standards. The toolkit should consist of best practices in AODA compliance, as well as tips on leveraging existing resources and requirements. The toolkit should include, but not be limited to, any information, documents and resources included in this report’s appendices.

Timeline:

Revisions to accreditation standards should be completed by 2025.

Intent:

The intent of the recommendation is to strengthen compliance with accessibility requirements, by working through third-party accreditation bodies that are currently active in the health care sector in Ontario. In addition, the recommendation calls for the development of additional non-regulatory resources to provide guidance and support for hospitals working towards improved accessibility.

Recommendation 19: compliance enforcement

Preamble:

There needs to be a focus on and strengthening of government accessibility compliance mechanisms for the Accessibility with Ontarians with Disabilities Act, 2005 (given the discrepancy between our members’ experiences and compliance results are incongruent).

The committee proposes the following recommendation:

  1. That the ministry enhance and improve accuracy of the self-report digital attestation process through modifications to the accessibility compliance report. Such modifications will include enforcement of mandatory validation of meeting accessibility requirements with sign-off requirements in order to complete the electronic tool. Mandatory verification is based on specific and accurate information regarding what full compliance for the specific item would entail. Furthermore, the attestation should include a reminder of the fines applicable for non-compliance.
  2. That the ministry implement an additional component to the AODA compliance and enforcement framework. This new component would entail an accessibility verification and compliance site visit, a site visit similar to Accreditation Canada whereby evidence of compliance must be visible across the organization. Such standardized and routine site visits could be carried out from either a randomly selected segment of the hospitals in the province or scheduled with the AODA team attending to all Ontario hospitals within a five-year window.
  3. Every year as part of every hospital funding agreement with the Government of Ontario, an accessibility plan should be developed by each hospital to address weaknesses and barriers to accessibility documented by hospital and other health care facilities specifically within their evaluation processes including, but not limited to:
    1. independent evaluation
    2. complaints
    3. feedback mechanisms
  4. All hospital accessibility plans must, under the regulation, be uploaded into a searchable public database (created by the Ministry for Seniors and Accessibility) where communities can easily understand the accessibility of the hospitals that they are visiting and/or being treated within and have the ability to determine the level of accessibility progress of each hospital.
  5. That government ensure that hospital funding agreements are contingent on successful accessibility verification and compliance site visit action plan compliance and transfer payment agreements will not be administered by government until all measures are met.
  6. The ministry will amend the existing accessibility compliance report attestation to include a specific requirement regarding the hospitals’ patient relations process, ensuring that it is publicly displayed, fully accessible and available in alternate formats. Evidence of this requirement will be part of the on-site validation site visit to ensure full compliance with an accessible patient relations process.
  7. Every hospital and health care facility in Ontario must develop fully accessible webpages in accordance with the information and communications standards on their websites informing persons with disabilities what is available to them to meet their accessibility and accommodation needs. This includes, but is not limited to:
    1. all accessible services and supports available
    2. all training and accessibility professional development offered
    3. service navigation and contact persons for assistance
    4. partnerships with organizations to achieve accessibility and accommodation needs
    5. complaints process
    6. feedback mechanisms for improvements

Timeline:

To be determined following public feedback.

Intent:

The committee’s view is that the Accessibility for Ontarians with Disabilities Act, 2005 lacks adequate compliance enforcement, and that mechanisms implemented by the Ministry for Seniors and Accessibility should be stronger. The intent of the recommendation is to create a new site visit or inspection requirement, in addition to the existing self-reporting and auditing framework. As well, the recommendation ties hospital funding from the government to verified compliance with accessibility requirements.

Recommendation 20: enforcement strategy and framework – hospital accessibility standards

Preamble:

In addition to the recommendations that the committee has made enhancing the existing enforcement measures in place under the Accessibility for Ontarians with Disabilities Act, 2005, the committee is proposing an additional enforcement framework specific to the proposed new health care standards.

This approach is based on a cycle of negotiated and mutually agreed on actions to meet the requirements of new health care standards, and the goals identified in a hospital’s multi-year accessibility plan, with verification and enforcement action occurring every three years.

The intent is that hospitals and the Ministry for Seniors and Accessibility can work together on identifying goals with firm timelines, with mutual understanding that there will be enforcement actions if goals are not met as planned.

Full implementation of accessibility can fall short of its goals if it is not enforced.

The committee proposes the following recommendation:

  1. The Ontario Government work with the disability sector, including persons with lived experience of disability, and key stakeholder groups to develop a new clear and transparent enforcement strategy and framework specific to hospital accessibility over the next three years.
  2. The enforcement strategy will be targeted to implementation of new accessibility requirements under health care standards, as well as verification of all applicable requirements under the Integrated Accessibility Standards Regulation.
  3. The enforcement strategy and framework will:
    1. clearly communicate how government will assess and verify for compliance with requirements within each hospital, with associated timelines
    2. if requirements or agreed upon goals have not been met, government shall consider any potential extenuating circumstances that prevented the hospital from achieving agreed upon accessibility goals before applying enforcement actions
    3. government work together with each hospital to develop an agreed upon plan for which monetary and/or non-monetary enforcement actions will be taken if compliance is not achieved, in order to clearly communicate what consequences would be applied
  4. The enforcement strategy and framework will be publicly available once complete. This should include being posted online, in both official languages, in accessible format with alternate formats available.
  5. Each hospital’s agreement and goals will identify priority areas for improvement. These are to be selected based on the requirements under the proposed health care standards, and the goals identified in each hospital’s multi-year accessibility plan.
  6. The Ontario Government will evaluate its enforcement, compliance and accountability approach to hospital accessibility every three to six years once the new requirements and enforcement framework are in place. The results of this review will be publicly reported. Following this review, government would be required to update the framework and make any appropriate changes.
  7. At the end of each three-year cycle, all infractions and non-compliance to hospital accessibility regulations will be available to the public within a searchable database along with its mandated annual accessibility plans.
  8. All high-performing and compliant hospitals will be available to the public within a searchable database along with its mandated annual accessibility plans.

Timeline:

To be determined following public feedback.

Intent:

The intent of this recommendation is to establish a collaborative and rigorous approach to enforcing compliance with accessibility requirements in the hospital sector, and to provide transparency to the public.

Recommendation 21: outreach

Preamble:

Government must pursue outreach and education programs to broaden awareness about accessibility rights and duties within the health care sector. This should be undertaken together with hospitals and persons with disabilities, and include programs to broaden awareness of hospital complaints and patient relations processes. The lack of awareness creates an accessibility barrier to implementation of accommodations and supports as well as to having patient complaints heard or resolved.

The committee proposes the following recommendation:

  1. Government shall create an outreach campaign (including public service announcements) to heighten awareness and inform Ontarians about accessibility rights and accommodations and supports in the hospital/health care environment. This outreach shall provide content specific to the health care standards including, but not limited to:
    1. Accommodation/accessibility, including the principles of dignity, respect and independence such as:
      1. anti-ableism awareness/education
      2. anti-stigma awareness/education including stereotypes, unconscious/conscious bias
      3. accessibility awareness/education
      4. examples of the range and types of disabilities and accessibility accommodations and supports required at the point of care and health risks if accommodation and supports are not provided
      5. communication accommodation and supports for understanding spoken and written language, effective communication about health care concerns, treatment choices and/or making decisions to give informed consent
      6. information about accessibility rights, accommodations and supports
    2. The complaint process and procedure, including how to file a complaint about the lack of accessibility accommodation and supports in services, facilities or goods, timelines and the right to communication that is accessible and available in alternate formats on request.
    3. Third-party responsibilities under the health care standards.
  2. The outreach campaign shall be provided in both official languages and additional languages as appropriate, and in different accessible media formats including, but not limited to:
    1. social media and internet ads
    2. virtual ad
    3. podcast
    4. television
    5. print campaign
    6. audio for radio
    7. available in alternate format
  3. Outreach campaign materials shall be supported by sign language interpretation and Communication Access Realtime Translation (CART) provided by accredited steno captioners.
  4. The government shall create an outreach campaign in partnership with persons with disabilities.
  5. The ministry shall ensure that adequate funding is provided to create an Accessibility 2025 outreach campaign for hospitals/health care.

Timeline:

Government shall pursue this outreach recommendation as soon as possible.

Intent:

The intent of this recommendation is to support better awareness of accessibility in the health care sector, educating Ontarians both on why accessibility matters and on how to achieve better accessibility.

Recommendation 22: accessibility and disability during a pandemic or emergency situations

Preamble:

Over the past few months, the pandemic revealed many cracks in our health care system. We recommend a range of ways to enhance health care across all settings, in particular long-term care facilities for all residents, especially older adults. Accessibility standards are needed in all settings, not only hospitals, and their implementation should be considered by health care providers and administrators across the spectrum. As a result, the committee proposes that all recommendations included here should apply, with revisions as needed, to health care facilities other than hospitals. This would include nursing homes, outpatient rehabilitation centres, community health centres, freestanding diagnostic imaging and laboratory facilities, medical clinics and agencies providing support services.

The impact of the COVID‑19 pandemic on individuals and communities is unprecedented. The committee noted the personal and professional toll on many committee members, including as persons with disabilities, as family members or family caregivers of persons with disabilities, and as health care professionals working to respond to the impact of the pandemic in hospitals.

In June 2020, the Health Care Standards Development Committee had the opportunity to share insights related to the profound challenges faced by persons with disabilities seeking health care services and disability supports during the ongoing COVID‑19 pandemic. The committee met to:

  • consider and discuss how the pandemic may influence their recommendations for accessibility in hospitals
  • share hospital-related and lived experiences and insights

The committee emphasized that these challenges and concerns may apply broadly to any states of emergency in the future.

These included concerns such as access to clear and understandable information about available services, access to services normally provided in hospitals as part of discharge planning, and the need for an accessibility and disability lens as part of the development of medical triage protocols. These concerns are heightened by the more severe impact of the pandemic on persons with disabilities from marginalized populations. Communities that were disproportionately impacted include people who are Black, Indigenous, and people of colour, Francophone communities, LGBTQ2S+ people, lower-income communities, and persons with disabilities living in congregate environments, such as group homes or nursing homes.

This recommendation is intended to guide government and the health care sector as they manage the ongoing COVID‑19 pandemic and for future states of emergency.

The committee recommends the following:

  1. Following the end of declarations of a state of emergency, government conduct a review of successes and failures in relation to persons with disabilities and their access to health care. This should include:
    1. Establishing an advisory panel to provide guidance throughout the ongoing state of emergency, and on an ongoing basis following the end of emergency orders. The advisory panel must include a majority of members with lived experience of disability.
    2. Conducting a broad, accessible consultation of persons with disabilities on their experiences during the state of emergency to inform future government programs and services in similar states of emergency. This should occur as soon as possible following the end of the current emergency orders.
  2. Government work with public health units and other public sector partners to gather data and report on the impact of the State of Emergency on persons with disabilities. Data collection and reporting should specifically consider the impact on persons with disabilities who face additional health inequities due to social determinants of health. These include, but are not limited to:
    1. people who are Black, Indigenous, and people of colour
    2. Francophone populations
    3. persons who are LGBTQ2S+
    4. lower-income communities
    5. persons with disabilities living in congregate environments, such as group homes or nursing homes
    These data and subsequent reporting must be used to underpin an equity and disability lens for future planning.
  3. Government develop authoritative and clear guidance, to be provided as a resource for municipalities and the public when mandatory masking orders are in effect. Mandatory masking orders typically require the use of non-medical face coverings or masks, which may impede communication. Guidance should include:
    1. additional information on when exemptions may be required for persons with disabilities
    2. a comprehensive explanation of the impact of masking on communication for Deaf persons and persons who are hard of hearing or deafened and people who have speech and language disabilities
    3. the importance of the availability of accessible masks for improved communication (examples may include full face shields)
  4. Government develop and distribute guidance to pharmacies and health care product/services vendors on accessible service delivery and accessible customer service in emergency situations. This could include ensuring that pharmacies and health care product/services vendors offer options for telephone or online shopping as well as options for delivery and curbside pickup, as well as ensuring that services are provided within a timely manner.
  5. Government conduct a broad review of emergency management policies and processes, and update policies based on a disability lens. This review and update should include:
    1. prioritizing clear and accessible information about emergencies, as well as information about accessing health care services during an emergency
    2. ensuring that accessible and easy to understand information is made available to individuals with cognitive or developmental disabilities
    3. ensuring press conferences and other emergency updates are supported by sign language interpretation and Communication Access Realtime Translation provided by accredited steno captioners
    4. ensuring that human rights and accessibility requirements are reflected in all policies and procedures
  6. During a health-related state of emergency, government provide guidance to relevant testing centres on accessible queueing protocols and ensuring staff are trained on accessible customer service. This may include prioritizing persons with disabilities in the queue when appropriate or providing the option of a mobile testing service to an individual’s home.
  7. Government work with hospitals and other public sector partners to ensure a disability and accessibility lens is applied to management of emergency situations. This should include the following considerations:
    1. ensuring that Ontario's clinical triage protocol is consistent with an accessibility and human rights lens and with current, established scientific principles of testing (for example, validity and reliability)
    2. maintaining access to supports and services, for example Assistive Devices Program, onboarding programs for individuals with newly acquired disabilities, and discharge programs to the home or to other health care settings
    3. maintaining access to home care services and support services
    4. maintaining access to visitors for persons with disabilities in hospitals in an infection-control framework, and recognizing that visitors may be essential for persons with disabilities
    5. recognizing the heightened impact of delayed or cancelled health care appointments on persons with disabilities, emphasizing continued accessibility of health care services for persons with disabilities, including prioritizing in-person care where possible and recognizing that the shift to virtual care may not be appropriate or accessible for all persons with disabilities
    6. providing access to communication aids and support person(s) during triage and in-patient services
    7. providing speech language pathology services for patients with acquired communication disabilities due to intubation, ventilation and other medical interventions to support them communicating about health care, health care decisions and with family members, and to provide support with swallowing disabilities
    8. requiring all hospitals to develop a process to ensure continued access for persons with disabilities to their personal caregivers and support persons while admitted in hospital during a state of emergency, either virtually or in person, in a safe manner and in a manner respecting the individual’s choice
      • Note: support people include ‘essential caregivers’ or ‘essential partners in care’ and are to be exempt from visitation restrictions, including but not limited to the following environments: hospitals, long-term care homes and disability group homes
    9. maintaining access to available and affordable transportation to and from medical appointments
    10. accommodating service animals in an infection-control framework
  8. All guidance and information from the provincial government and public sector partners (including hospitals, public health units and municipalities), including emergency information and mandatory masking orders, to be made available online, in both official languages, in accessible formats, with alternate formats available.

Timeline:

To be determined following public feedback.

Intent:

This recommendation was developed by the committee based on personal and professional experiences and insights during the COVID‑19 pandemic. The recommendation is intended to ensure the needs of persons with disabilities are considered throughout all government policy and planning in future emergency situations.

Conclusion

These initial recommendations developed by the committee are intended to address barriers to accessibility that persons with disabilities may encounter at any stage of their patient journey. The committee asks that the public review the recommendations with that goal in mind. Recommendations are also intended to encourage hospitals to think differently and find ways to adapt current systems for better accessibility.

The committee looks forward to the public feedback that will follow the posting of these initial recommendations. All input will be considered by the committee before final recommendations are made.

Committee members

Voting members:

  • Sandi Bell, chair of the committee, President of EMPOWWORD, Inc.
  • Carol Anderson, health care consultant
  • Sue Anderson, Sioux Lookout Meno Ya Win Health Centre
  • Peter Athanasopoulos, Spinal Cord Injury Ontario
  • Crystal Chin, disability community representative (member in absentia)
  • Raj Chopra, chair, Accessibility Advisory Committee of the Region of Peel and co-founder, Accessibility Advisory Committee of William Osler Health Systems
  • Barbara Collier, Communication Disabilities Access Canada
  • Serge Falardeau, The Ottawa Hospital
  • Yona Lunsky, Centre for Addiction and Mental Health
  • Lorin MacDonald, human rights lawyer and accessibility specialist
  • Melanie Marsden-Myers, Indigenous and disability community representative and consultant
  • Dr. John McDonald, independent physician
  • Marianne Park-Ruffin MA, gender-based violence activist and disability community representative
  • Diane Quintas, Réseau du mieux-être francophone du Nord de l’Ontario, Francophone community representative
  • Sam Savona, disability community representative
  • Jacqueline Silvera, University Health Network
  • Dr. Natalie Spagnuolo, researcher and consultant
  • Richard Welland, disability community representative

Non-voting members:

  • Mary Bartolomucci, Ministry for Seniors and Accessibility
  • Tara Wilson, Ministry of Health

Past members:

  • Uppala Chandrasekera, Canadian Mental Health Association (resigned 2018)
  • Gurwinder Gill, William Osler Health Centre (resigned 2018)
  • Gord Kyle, Community Living Ontario (resigned 2020)
  • Toni Lemon, Waterloo-Wellington Local Health Integration Network (resigned 2018)
  • Seble Makonnen, Canadian Mental Health Association (resigned 2018)
  • Jennifer Schipper, Health Quality Ontario (resigned 2019)

Glossary of terms and definitions

This is a non-legal and plain language glossary of terms used in this report, as well as concepts referred to during committee discussions, to support a shared understanding of select words and concepts.

Ableism
A term used to describe the discriminatory communications, actions, policies and practices against persons with disabilities. Ableism may be individual or systemic, conscious or unconscious, and has been found to be embedded in institutions, systems and the broader culture of a society. Ableism is analogous to racism, sexism or ageism, that sees persons with disabilities as being less worthy of respect and consideration, less able to contribute and participate, or of less inherent value than others. Ableism can limit the opportunities of persons with disabilities and reduce their inclusion in the life of their communities. Ableism intersects with other forms of discrimination, such as racism, sexism and ageism.

Accessibility
In this report, accessible and accessibility are broadly defined to describe an environment, process, procedure, tools, training, guidelines or anything that is free of barriers for persons with disabilities.

Accessible consultations
Where recommendations refer to a public feedback and consultation requirement, this could involve:
  • Multi-Year Accessibility Plan (MYAP): public hospitals are required to develop and periodically review and publish MYAPs. Public hospitals are already required to consult persons with disabilities when reviewing and updating their MYAPs, however, attention could be paid to:
    • broader consultation with disability organizations
    • health service planning, including capital planning and quality of care
    • MYAPs under section four of the Integrated Accessibility Standards Regulation require five-year reviews and updates, however, the nature of the consultations is left ambiguous
  • Formalized consultations should include accessible modes and mediums (such as simple language documents and materials, accessible online feedback mechanisms (such as surveys, questionnaires), timing requirements (that is, must publicly consult with disability organizations and persons with lived experience of disabilities one year prior to updating MYAPs).
Accessible forms
Accessible digital forms that can be completed using assistive devices and allow the user to take breaks and save their input as required.

Access to health services, access to care
In this report, this means equitable and barrier-free delivery of health care, covering the full complement of health care services in hospitals, including those services covered by the Health Insurance Act (Ontario Health Insurance Plan) and those covered by the Public Hospitals Act.

Accessible information
Accessible information is easy to read and understand by the individual for whom it is intended.

Accessible text, layout and design
Digital and print materials that follow best practice guidelines for font, alignment, colour contrast, layout and use of graphics.

Accessible video
Videos that are captioned or subtitled.

Accommodations and the duty to accommodate
Accommodations are integral to achieving non-discrimination. The duty to accommodate is a core feature of Canadian human rights law. The duty extends only to the point of undue hardship.

Accommodations and supports for patients who have disabilities that affect communication
Refers to accommodations and supports that a patient may need for effective two-way communication with health care service providers and support personnel throughout the continuum of care in one or more areas of understanding spoken and/or written information, expression of questions, concerns, preferences, and/or weighing up consequences, considering options and risks and making decisions, completing and signing forms.

Advisor(s) in consent situations, or decision supporter
Patients with disabilities may require assistance from authorized and trusted people to support them to make decisions relating to their health care.

Alternate or substitute decision makers
Some patients with disabilities may have a legally appointed guardian, attorney for personal care or substitute decision maker. Alternate decision makers must always consult with the patient and take into account the person’s will and preferences. A substitute decision maker may be a court appointed guardian, a power of attorney or a family member.

Alternative format
Written information provided as an alternative to standard print or handwritten information. Examples include large print, Braille or digital formats.

Alternatives to telephone
Alternatives to telephone use, may include electronic messaging (such as email, text, live chat or instant messaging, fax) or message relay services such as teletypewriter (TTY) or video relay.

Anti-oppression framework
Anti-oppression can be defined as the lens through which one understands how various social locations – racialization, gender, sexual orientation and identity, disability, age, class, occupation and social service usage – can result in systemic inequalities for particular groups. An anti-oppression framework is based on this understanding and is intended to be a tool to work towards equity (the elimination of disproportionality and disparity).

Attestation
A formal statement verifying that something is true. In the recommendations proposed by the committee, the term “attestation” refers to the report submitted by an organization to the government, confirming that they have met all accessibility requirements and can provide evidence or documentation to confirm that they are in compliance.

Augmentative and alternative communication aids/assistive devices
Augmentative and Alternative Communication (AAC) aids and assistive communication devices are typically provided through accredited, regulated clinical AAC communication services. Depending on the needs of the individual they may include custom-built letter, picture or symbol boards, speech-generating device, adapted computers, hearing aids, switches to operate devices, eye gaze technology, amplifiers.

Authorized support person(s)
Person(s) chosen and authorized (in writing or otherwise) by a person with a disability, who has capacity and provided informed consent, to provide a supportive role for the patient in health care situations. Depending on the needs of the patient, a support person may assist with communication, personal care and/or assistance to make decisions. A support person may be a family member or friend.

Barrier
Means anything that prevents a person with a disability from fully participating in all aspects of society because of their disability, including a physical barrier, an architectural barrier, an information barrier, a communication barrier, an attitudinal barrier, a technological barrier, a policy or a practice. Barriers are discriminatory, whether intentional or not. Embedded and unconscious barriers exist in polices, practices and traditional frameworks such as the medical model of disability.

Braille
A system of touch reading and writing for some persons with blindness, low vision or vision loss in which raised dots represent the letters of the alphabet.

Capacity to consent
A person is capable of consenting to medical treatment if the person is able to understand the relevant information and appreciate the reasonably foreseeable consequences of the decision. Generally, adults in Ontario are legally presumed to be capable unless there are reasonable grounds to believe otherwise. For more information, consult the Ontario Human Rights Commission, “Consent and Capacity.”

Communication Access Realtime Translation (CART)
CART is the live, word-for-word transcription of speech to text so that individuals can read what is being said in group settings or at personal appointments on a laptop or a larger screen. CART services can be provided on-site or remotely, in English or French, via a secure website.

Communication accommodations/assistive devices (augmentative and alternative communication)
Items that enable patients with communication disabilities to understand and communicate effectively. Examples are pen, paper, picture/photo/text cards/video explanations/symbol or letter boards, communication devices, artificial larynx, adapted call bells, baby monitor, voice amplifiers, hearing aids, pocket talker, glasses and visual aids, plain language materials, pictures to support comprehension, easy reading, alternate-format documents. Communication aids can be generic or commercial for some situations (for example, emergency room, ambulance, bedside, Intensive Care Unit) or custom made for an individual to reflect their specific communication needs.

Communication assistant
An authorized support person who conveys messages as generated by the individual and assists if the individual’s messages are not understood or if the individual requires support to understand spoken or written information, or to complete and sign forms.

Communication barrier
Any obstacle that prevents the effective exchange of ideas, thoughts and questions in face-to-face, group or telephone interactions, and via reading and writing. Barriers include information that is presented in ways that the patient cannot understand what is being said and/or written, and/or not having effective communication methods, aids, supports, time or opportunity to negotiate their health care issues, express opinions, ask questions and provide consent to treatment.

Communication contexts
Refers to instances when a patient may need accommodations and/or supports for effective two-way communication with health care service providers and support personnel throughout the continuum of care. This includes face-to-face interactions to discuss health issues, communication over the telephone, at meetings and case conferences, reading and understanding of health care information, consent forms and prescriptions, and completing and signing of medical forms and consent documents.

Communication methods
Communication methods include speech, vocalization, mouthing, body positioning, facial expressions, eye gaze, gestures, mime, sign language, adapted signs, writing, drawing, typing, selecting or pointing to pictures, photographs, symbols, written words and letters of the alphabet.

Communication strategies
Best practice techniques that can be used by a health care provider, family member or support worker when communicating with a patient who has a communication disability. Examples of communication strategies include providing information in ways the patient can hear and understand and ensuring the person has the means, opportunity and time to communicate their messages.

Communication supports
Support can be informal and provided by a person who knows the patient well, such as a family member or support worker and who has been authorized by the patient to assist with communication. In some situations, communication support may be formal and provided by a sign language interpreter, intervenor, Deaf interpreter, translator or speech-language pathologist.

Continuum of care
Generally describes the delivery of health care over a period of time, in an integrated way, often from a range of health care providers. In the context of the report, continuum of care means maintaining continuity of the medical care delivered to the patient, especially when switching between health care providers or health care settings.

Culture of accessibility
The committee envisions a culture shift, from a point where accessibility for patients is managed as an exception to the system, toward an inclusive culture where accessibility is expected and integrated into the planning and delivery of health care for the whole population.

Deaf
A person who cannot understand speech (with or without hearing aids or other devices) using sound alone (that is, no visual cues such as lip-reading) and who depends upon visual rather than auditory communication. “Visual means of communication” include sign language, lipreading, speechreading, and reading and writing. Such individuals are distinguished with the use of the word “Deaf” being capitalized.

Deafened
Individuals, who grow up hearing or hard of hearing and, either suddenly or gradually, experience a profound hearing loss. Deafened adults usually use speech with visual cues such as Communication Access Realtime Translation (CART) or computerized notetaking, speechreading or a signed language.

Deafblind
A person who is Deafblind has a combined loss of hearing and vision to such an extent that neither the hearing nor vision can be used as a means of accessing information to participate and be included in the community.

Deaf interpreter
Deaf individuals who are fluent in ASL or LSQ and have interpreting experience. They work together with a hearing interpreter to facilitate communication between a Deaf person and a hearing person.

Dimensions of diversity
The unique personal characteristics that distinguish us as individuals and groups, which include, but are not limited to: age, sex, gender, race, ethnicity, physical and intellectual ability or disability, language, creed, religion, sexual orientation, educational background and expertise. Dimensions of diversity encompass all of the ways in which each of us differs.

Direct service provider
Within the developmental disabilities community, support staff may be referred to as direct support professionals, developmental service workers or developmental support workers. These individuals are trained specifically to support people with developmental disabilities. A direct service provider may or may not be authorized by the individual to assist with communication and/or decisions. It should be noted that direct service providers are not authorized to make decisions on the individual’s behalf.

Disability
Members noted that there are a number of different definitions of disability enshrined in provincial and federal law. As a committee established under provincial legislation, and working in partnership with two provincial ministries, the definition established in the Ontario Human Rights Code was the first one highlighted in committee discussions.
Since this definition was established in law, it has been interpreted more broadly in a number of legal precedents. Within this more inclusive interpretation, disability is understood to be self-identified, inherently diverse, include both visible and non-visible impairments, can be acquired and have genetic origin.
As defined in the Ontario Human Rights Code:
  1. any degree of physical disability, infirmity, malformation or disfigurement that is caused by bodily injury, birth defect or illness and, without limiting the generality of the foregoing, includes diabetes mellitus, epilepsy, a brain injury, any degree of paralysis, amputation, lack of physical co-ordination, blindness or visual impediment, deafness or hearing impediment, muteness or speech impediment, or physical reliance on a guide dog or other animal or on a wheelchair or other remedial appliance or device
  2. a condition of mental impairment or a developmental disability
  3. a learning disability, or a dysfunction in one or more of the processes involved in understanding or using symbols or spoken language
  4. a mental disorder
  5. an injury or disability for which benefits were claimed or received under the insurance plan established under the Workplace Safety and Insurance Act, 1997
Members also suggested referring to more recent definitions of disability, such as the definition set out in the federal Accessible Canada Act:

any impairment, including a physical, mental, intellectual, cognitive, learning, communication or sensory impairment – or a functional limitation – whether permanent, temporary or episodic in nature, or evident or not, that, in interaction with a barrier, hinders a person’s full and equal participation in society.

Disability specialist
Commonly understood in the disability context to mean accessibility/accommodation experts such as occupational therapists, professionals trained to perform ergonomic assessments, and properly judge appropriate workplace accommodations. The intent of the recommendations is to expand the concept of disability specialist to focus on developing accessibility practices for the delivery of health care, procedures and accommodations in a hospital setting. This includes individualized assessments by way of consulting with the patient or person with disability to determine necessary modifications to health care delivery. It also includes recognizing the expertise that comes from lived disability experience.

Effective communication
Effective communication is the successful joint establishment of meaning wherein patients and health care providers exchange information, enabling patients to participate actively in their care from admission through discharge, and ensuring that the responsibilities of both patients and providers are understood. To be truly effective, communication requires a two-way process (expressive and receptive) in which messages are negotiated until the information is correctly understood by both parties. Successful communication takes place only when providers understand and integrate the information gleaned from patients, and when patients comprehend accurate, timely, complete and unambiguous messages from providers in a way that enables them to participate responsibly in their care (The Joint Commission: Advancing Effective Communication, Cultural Competence, and Patient and Family-Centered Care. A Roadmap for Hospitals. Oakbrook Terrace IL: The Joint Commission, 2010, p. one).

Essential caregiver
The term 'essential caregiver' empowers some persons with disabilities by recognizing the importance of informal and unpaid sources of support provided by trusted individuals. This may include close relative(s) such as parents or siblings, who provide emotional support, communication support and support around decision-making. Often, direct in-person access is required to maintain these essential care relationships.

Hard of hearing
A person who has a hearing loss and whose usual means of communication is spoken language. This definition includes a broad spectrum of hearing loss, including those who are late-deafened and those deaf in childhood and educated orally.

Health care provider
Broadly describes all workers responsible in any way to the delivery of health care services in a hospital. This can include: health care professionals from regulated health professions, contract professionals, hospital workers, volunteers, third-party workers.

Home language or mother tongue
Refers to the language the patient first learned and typically uses at home and/or the language they are most comfortable or proficient in using. In addition to communication accommodations and supports, a patient whose home language is different from a health care provider’s language and who has difficulty understanding and communicating in the health care provider’s language, may require a language interpreter and/or translated written materials.

Intersectionality
Acknowledges the ways in which people’s lives are shaped by their multiple and overlapping identities and social locations, which, together, can produce a unique and distinct experience for that individual or group, for example, creating additional barriers or opportunities. In the context of disability, this means recognizing the ways in which an individual experiences ableism, barriers to accessibility or other forms of inequity, by additional overlapping (or “intersecting”) social identities, such as ethnicity, Indigenous identification, experiences with colonialism, religion, gender, citizenship, educational status, language, socio-economic status or sexual orientation.

Intervenor
Professionals who provide intervention to an individual who is deafblind. The intervenor mediates between the person who is deafblind and their environment to enable them to communicate effectively with and receive non-distorted information from the world around them.

Language interpreter
A language interpreter translates oral speech from one language to another.

Large print
Printed information enlarged and formatted in ways a person with low vision can read

Lipreading or speechreading
Lipreading means watching the movement of the lips, jaw and tongue to discern what sounds and words are being shaped and spoken. Only about 40 per cent of the spoken language appears on the lips.

Speechreading involves understanding a person through a combined “look and listen” technique. The speech-reader sees visible movement and sometimes hears at least part of the message. This visible movement is not only lip, tongue and jaw movement but also facial expression, eye expression, body language, the context in which the person is speaking, and whatever sounds one hears. All possible cues are utilized to assist in speechreading, including sight, amplified sound and educated guessing.

Message relay system
A trained operator relays printed and/or spoken messages to and from communicators over the telephone.

Models of disability
The medical model views disability as a limitation or impairment of the individual person, with a focus on curing or managing disability. The social model views disability as a consequence of environmental, social and attitudinal barriers that prevent people with an impairment from equal participation in society. The committee worked from the social and environmental model of disability, which emphasizes the importa¬nce of addressing barriers to persons with a disability and of working towards a more accessible society for all persons.

Patient-centred care
Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, “including accommodation needs and support requirements,” and ensuring that patient values guide all clinical decisions.

Patients with communication disabilities
Patients with communication disabilities include children and adults with pre-existing disabilities that affect communication, patients with recent onset (first time) communication disorders (stroke, acquired brain injury) and patients with recent or temporary communication limitations due to medical interventions (intubation, tracheostomy, ventilator, laryngectomy).

Disabilities that affect communication may impact one or more areas of a person’s ability to speak, hear, read, write and/or understand what is being said. Disabilities that may affect communication include but are not limited to cerebral palsy, intellectual disability, learning disability, autism spectrum disorder, multiple sclerosis, Amyotrophic Lateral Sclerosis, aphasia, dementia, acquired brain injury, head and neck cancer, Parkinson’s disease and other disabilities.

Patients with communication disabilities are diverse and are represented across all ages, ancestry, races, ethnic origins, linguistic, intellectual abilities, creed/spirituality, gender identity, sexual orientation, financial, family, marital status and cultural communities. In addition, they may or may not have additional (intersecting) disabilities such as physical, intellectual, sensory, learning ability and mental health issues.

PDF documents
When posted online, a document, which has been coded and rendered PDF accessible, can be read out loud by a screen reader, enabling someone with vision loss to have the same access to information as someone with vision.

Person(s) with disability
The committee chose to employ person-first language with respect to disability. The plural of person (rather than “people”) signals that each individual with disability experiences it differently and may require individualized accommodation as a result.

Plain Language/Easy Read documents
Writing that is clear, concise, well-organized, and follows other best practices appropriate to the subject or field and intended audience.

Quality of care
Means the standard of care that a health care professional must meet in order to satisfy their professional regulatory guidelines and requirements, including any potential training and educational requirements related to accessibility and accommodations necessary to provide quality care to patients with disabilities.

Personal support worker (PSW) or attendant services
Services that a person may need for positioning, transfers, mobility, washroom, assistance with eating and drinking and personal hygiene. A PSW or attendant may work for an agency or be employed directly by a person with a disability. Patients with pre-existing communication disabilities may require their PSW or attendant to provide these services to them when they are hospitalized. A PSW or attendant may or may not be authorized by the individual to assist with communication and/or decisions.

Point of care
Point at which medical/health care staff directly interact with patients with disabilities and their support persons, family or caregivers.

Preferred communication method
Refers to the patient’s preference in using their communication methods in a specific situation. For example, a patient may prefer to use a letter board or answer yes and no questions rather than using their speech-generating communication device when lying in bed. A person may use sign language as their preferred communication method.

Principles of Independent Living
From the Centre for Independent Living: Independent Living (IL) is a vision, a philosophy and a worldwide movement of persons with disabilities which changed the way people view and respond to disability. Independent Living is founded on the right of persons with disabilities to live with dignity in their chosen community, participate in all aspects of their life, and control and make decisions about their own lives.

Rights-based approaches
The committee’s discussions are founded in the modern Canadian legal context recognizing disability is a ground for discrimination under the Ontario Human Rights Code which includes the right to equality in services and the provision of accommodation to the point of undue hardship.

Sign language interpreter
Enables a conversation between a member of the culturally Deaf community and people who speak another language such as English and French. In Canada, the most popular types of sign language interpretation consist of American Sign Language (ASL) and Langue des signes Québécoise (LSQ). Interpreters are knowledgeable in the sign language and culture of Deaf and hard of hearing persons, and the spoken language and the norms of the (hearing) majority culture.

Speech-language pathologist
A professionally, regulated health care professional who is qualified to assess and provide communication accommodations and supports for patients who have no reliable way to communicate, where capacity to consent is questioned, where there is a perceived conflict of interest or evidence of coercion or abuse of power, and in high-risk situations such as negotiations relating to medical assistance in dying.

Strengths-based approach
This approach recognizes that the right to individualized accommodation needs of persons with disabilities, including the right to make informed decisions about one’s health care and treatment options, are central and essential to their participation in health care services and decisions.

Support person(s)
Individuals authorized by the patient to assist with personal care, communication and/or decision making. Support person(s) can be family members, friends, paid service providers. They are not substitute decision makers.

Systemic ableism
Includes widespread, normalized discrimination against persons with disabilities that is supported by institutionalized and cultural ideas and practices – including, for example, laws, policies and unconscious forms of bias.

Systemic discrimination
When institutions or systems create or maintain inequity, often as a result of hidden institutional biases in policies, practices and procedures that privilege some groups and disadvantage others.

Translator
A translator interprets written text from one language to another.

Unconscious bias
Negative unconscious or implicit bias can impact patients from marginalized communities. Research shows a correlation between level of implicit bias and lower quality of care.

Universal Design
The design of buildings, products or environments to make them accessible to all people without additional adaptation or modification, regardless of age, disability or other factors.

Vision loss or low vision
A level of vision loss or low vision that has been legally and clinically defined for persons with a central visual acuity of 20/200 or less in the better eye with the best possible correction, and/or a visual field of 20 degrees or less.

World Health Organization – International Classification of Functioning, Disability and Health
World Health Organization framework for measuring health and disability at both individual and population levels.