Development of health care standards – final recommendations report 2022

Letter from the chair

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 final recommendations to the Minister for Seniors and Accessibility. I encourage you to share this report with your colleague, the Minister of Health. Our final report was extremely well-informed by the public input we received on our initial recommendations. This included feedback from individuals with disabilities and organizations that represent and/or advocate for people with disabilities and accessibility, as well as leaders in the hospital sector and the health care sector. We thank everyone who took the time to provide us with their insightful comments and examples.

For the past almost five 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 during all stages of their life, including youth and seniors, 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 considerations in 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. We also encourage the government to consult with these health care providers and partners to further identify and remove any barriers to accessibility experienced throughout those sectors. COVID‑19 reinforced this call for broader attention to the 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 the 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, inclusion 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
• clearly written policies, procedures and practices
• ongoing, up-to-date education, training, and toolkits
• 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 during the public feedback time-period, committee members encouraged sharing the recommendations with Ontario’s multiplicity of diverse communities, so their experiences, views, and ideas were elicited, considered, and reflected in this 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 included but was not limited to individuals and representatives of Indigenous peoples, including Métis and Inuit peoples.

The report received a large amount of public feedback through a survey, as well as many written submissions from a variety of sector organizations. I am very pleased to say that on average 98% of respondents agreed or mostly agreed with our recommendations. This was remarkable validation of all the great work of the committee. It also provided us with a wealth of comments on how to further improve our recommendations. The members and I met to review all of the feedback and refined our report to ensure it reflects the feedback and addresses gaps that were pointed out. We are proud of all the work we completed over just a few short months since the feedback period ended and we are hopeful that the final version of the report is even clearer and stronger in its objective.

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 members 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. This approach 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 improving accessibility.

It is important to note that even though there were extended timelines due to two lengthy pauses in our work and the continued 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 of 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, 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 for people with disabilities. We look forward to government’s response to our recommendations and hope swift action will be taken to implement them.

Sandi Bell
Chair, Health Care Standards Development Committee

Background

Standards development and the law

The Accessibility for Ontarians with Disabilities Act, 2005 (AODA) 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 Final Recommendations Report

This document sets out the committee’s final recommendations for proposed accessibility standards for hospitals. As required under the act, the initial version of the report was made available for public comment from May 7 to September 13, 2021. Following the public posting period, the committee considered all comments received and made changes to the proposed accessibility standards it considers advisable. Now that the report has been finalized, the committee has submitted 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 refer 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 offering to make appointments by alternative formats (for example, braille or 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 devices 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. The committee emphasizes that while the medical model is important, we should also 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 and often not current statistical data related to disability in Ontario and 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, diversity and inclusion

Equity is the removal of systemic barriers and biases enabling all individuals to have equal opportunity to access and benefit from services.

Diversity is the demographic mix of the community with differences in race, colour, language, culture, place of origin, religion, immigrant and newcomer status, ethnic origin, ability, sex, sexual orientation, gender identity, gender expression and age, and a focus on the representation of equity-deserving groups.

Inclusion is the practice of ensuring that all individuals are valued and respected for their contributions and are equally supported.

Persons with disabilities are diverse and represent all ages, ethnicities, creeds, races, abilities, 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, diversity and inclusion 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.

Person-first and identity-first

The language used to refer to disability is critical to ensure individuals’ dignity and respect their preferences. Person-first language focuses on the individual, rather than their disability. Examples include “individuals with disabilities” and “person with paraplegia.” This language attempts to dissociate the disability as the defining characteristic of a person and conceptualizes it as one of many characteristics. Person-first language was a response to societal perceptions of disability as dehumanizing, and an attempt to emphasize that disability does not “lessen one’s personhood.”

Identity-first language emphasizes one’s disability. Examples include “disabled people” and “autistic person.” This language validates an individual’s identity as a disabled person, rather than suppressing their disability as something negative. Identity-first language allows disabled people to reclaim their power and possession of disability as a positive social identity.

Using person-first and identity-first language acknowledges the diverse ways in which people prefer to speak about their disability. We recognize and value the importance of both, and that preferred language evolves over time and will continue to evolve after the publication of these standards. Consistent with the AODA language conventions, we use person-first language throughout this report; that is, we refer to people with disabilities as opposed to disabled people.

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 recommendations. These 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-centred care

Health Quality Ontario is committed to supporting the development of a quality health care system based on six fundamental dimensions: efficient, timely, safe, effective, patient-centred and equitable. The committee took into consideration these six dimensions of care in their discussions and recommendations.

The committee felt these dimensions of 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.

There are multiple elements of care of persons with disabilities that require particular attention, and present high risks. These include functional decline, need for mobility, continence, psychological and mental health.

Oral health care is one example of health care that is provided in hospitals and other settings (for example, nursing homes, group homes) that can be reviewed in consideration of these six dimensions of care.

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 which include, but are not limited to race, language, culture, 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. As noted above, 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, chronic or intermittent)
• 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 reflected on members’ individual experiences of the pandemic and considered its ongoing impacts during a meeting in June 2020, as well as subsequent small group meetings. 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 widespread 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.

Lack of national and provincial data on COVID‑19 impacts on people with disabilities

There has been very little research done at the national or provincial level to identify the impact of COVID‑19 on people with disabilities. A few small studies have been recently published and a few patterns were observed, mainly focused on the first two COVID‑19 waves. However, much more needs to be done in order for the government and public to have a better understanding of what went wrong with the response to this pandemic and how to prevent it from happening again in any future states of emergency.

COVID‑19 National Disability Survey Results

A national survey was conducted between December 19, 2020 and September 8, 2021. The survey was open to Canadian adults who identify as a person with a disability and adults who have a child or family member who has a disability.

The report shows that people are very concerned about mental health, social isolation and loss of jobs and work. People with disabilities said they need more of the services to support their mental health, like counselling, attendant care and recreation programs. Lastly, the pandemic changed people’s health with Canadians with disabilities reporting they are less healthy than before the pandemic.

COVID‑19 Ontario data

In Ontario and more specifically the Greater Toronto Area, researchers at the University of Toronto and Unity Health Toronto collected hospital data for 1,279 patients — 22.3 per cent of whom had a recorded disability — who were hospitalized for COVID‑19 at seven nearby hospitals from January through November 2020. The study found that people with disabilities had longer hospitalizations for COVID‑19 and were more likely to be re-hospitalized. This suggests that we need to give them the best care while in hospital and invest in transition plans and support when they leave.

A second Ontario study reported on COVID‑19 positivity rates, hospitalizations and mortality in adults with developmental disabilities relative to other Ontario adults. This study found, similar to what has been reported in other countries, that positivity rates were higher, along with hospitalizations and mortality. Rates were even more concerning for adults with Down syndrome.

Institute for Clinical Evaluative Sciences (ICES), the Ontario health data platform highlights that as COVID‑19 evolved, and the province went through more waves of infection, late vaccine prioritization for people with disabilities, despite some groups with disabilities being at much greater risk, has led to lower vaccination rates. Only certain disability groups are currently being reported on within the dashboard.

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.

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, in both official languages.
  • 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 in an ‘easy read’ and ‘plain language’ format. 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 disabilities who cannot read or who do not understand more complex information and need this information in supporting the prevention of community spread of COVID‑19.
• 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 (including printed resources) 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.

Discrimination against people with disabilities

• COVID‑19 testing centres were set up, along with vaccination centres (after the committee’s spring 2020 meeting) without apparent prioritizing of accommodation of persons with disabilities.
• Additionally, members reported hearing of instances whereby policies accommodating service animals in health care settings were disregarded 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. It is important that future triage protocols have a solid understanding of disabilities in their creation, so they do not discriminate against people with disabilities.

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, isolation, and sadness people in the disability community faced 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). For example, most health care virtual platforms do not allow captioning due to privacy concerns
• 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 should 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 limited to: Black people, Indigenous people, and people from racialized communities, and people with disabilities living in congregate settings outside of long-term care. 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 claw backs on pandemic-related financial benefits yet face additional expenses, such as increase cost of food leading to food insecurity.
• 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.

Long-term objective

Fair, rights-based, equitable, accessibility policies and practices that are enforceable and measurable with clear outcomes.

Barrier-free hospitals and health care that embraces empowerment, accessibility, diversity, and inclusion with an intersectionality lens.

Towards hospital and health care accessibility

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

Our vision is that hospitals and health care remove all systemic barriers (for example, physical, verbal, communicative) that impede persons with disabilities fully benefitting from the available health services they require and provide them with accessible, fair, effective and user-friendly services in alternative formats and in both official languages.

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

• design and operate accessible health care services, facilities and products 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 properly communicate with all persons with disabilities
• provide health care workers with information on how to identify, provide and document accommodations and supports for patients who have disabilities (for example, 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 (systemic) 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
• actively recruit persons with disabilities to ensure representation at all levels of paid, community and volunteer positions, especially in decision-making capacities, such as the board, its committees and senior executive team
• ensure that current, ongoing education and training, including the principles of accommodation under the Ontario Human Rights Code, is provided to all health care providers

Final 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 proactive 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, but not limited to, 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 for 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 lead/consultant

Preamble

Currently the work related to ensuring inclusion and accessibility in hospitals, including preparation of the AODA annual accessibility plan, is assigned to a hospital staff member with an existing portfolio. With the implementation of the health care standards for Ontario hospitals, there will be a significant focus on addressing many hospital policies, processes, and activities to ensure compliance with accessibility and inclusion being front and centre. As such, the work will need to move to the “front” of one’s desk as broad hospital engagement will be required to ensure success.

Intent:

The intent of this recommendation is to support hospitals in their efforts to bring about implementation and compliance with the new health care standard. By standardizing the role and functions of identified accessibility leadership in hospitals, it recognizes that the greatest success will be enabled by creating a dedicated position responsible for accessibility compliance within a hospital and creating a network of individuals from across Ontario hospitals who are responsible for implementation. This network can work together sharing ideas, successes, best practices, and issues in an effort to create a more accessible and inclusive health care system.

The committee proposes the following recommendation:

All hospitals in Ontario shall identify an individual to function as the hospitals’ Accessibility Lead/Consultant (see glossary). This individual shall support the implementation and integration of the health standards across the hospital in addition to building organizational capacity that will enable compliance with the standards.

Timeline:

Within 18 months of regulation being enacted.

Recommendation 2: engagement with persons with disabilities in hospital accessibility planning and design

Intent:

The intent of the recommendation is to put in place mechanisms to ensure accessibility is consistently considered as part of early hospital planning which enables proactive hospital decision-making. The committee highlighted the importance of full engagement, collaboration, and partnership 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 communities and the population of persons and organizations with disabilities represented.

The committee proposes the following recommendation:

1. Senior executive leadership of the hospital and/or boards shall ensure there is a formal mechanism to meaningfully secure effective representation of persons with lived experience of disability and organizations that represent people with a broad range of disabilities and diverse identities to participate in hospital planning. Such engagement shall include at a minimum health service planning, quality improvement activity and capital planning, and shall make information regarding this mechanism available to persons with disabilities in alternative formats, and in both English and French.
2. Senior executive leadership of the hospital and/or boards shall approve multi-year accessibility plans. Such plans shall be developed with consideration of all feedback received from direct consultation and other feedback mechanisms (for example, Patient Relations Process), including recommendations from any AODA focussed audits. The plans shall be available in alternative formats, and in both English and French.
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.
4. All hospitals shall actively recruit persons with disabilities/lived experiences for all community advisory committees of the hospital including the hospitals’ Patient Family Advisory Committee. In addition, consideration shall be given for such appointments when selecting members for the Ethics Committee, the Board of Directors and other Board Committees including the Quality-of-Care Committee.

Timeline:

Within one year of regulation being enacted.

Recommendation 3: procurement of services and equipment, and consideration of the Design of Public Spaces/Built Environment to ensure accessibility

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. This includes ensuring that vendors who are persons with disabilities are fairly treated during the procurement process.

Intent:

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

The committee also expressed that consultation with accessibility lead/consultant(s) 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.

The committee proposes the following recommendations:

1. Hospitals shall have in place a mechanism to consult with/include the participation of accessibility lead/consultant(s) and groups of individuals with disabilities on the procurement process for:
   1. the purchase of equipment
   2. service contracts
   3. extensive renovations or redevelopment projects, and
   4. leased space
2. The Ontario government shall ensure that any/all health care supply chain organizations (like Plexxus) have in place policies and procedures to ensure that their procurement processes include the participation of accessibility lead/consultant(s) and groups of individuals with diverse disabilities as part of their requirements for procurement initiatives.
   
   These recommendations apply to circumstances where the equipment, service or renovation project will have a direct impact on access to health care services for patients with disabilities. Examples of equipment include mobility, lifts, and communication devices. Examples of services include sign language interpreting, communication assistance and attendant services that a patient may require to access health care services.
3. Hospitals shall develop clear policies requiring that all new facilities, or renovations, incorporate principles of universal (inclusive) design and that all new patient equipment procured is fully accessible to individuals with a range of disabilities.
4. The Ontario government in collaboration with the health sector shall consider the accessible medical diagnostic equipment standards that the US Access Board has formulated for the accessibility of diagnostic and treatment equipment. These standards shall meet the needs of patients with all kinds of disabilities, and not only those with mobility disabilities.

Timeline:

Within one year of regulation being enacted.

Recommendation 4: access to accessibility equipment

Preamble:

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

Intent:

The desired outcome of this recommendation is to ensure that persons with disabilities have access to their own equipment and where needed to all hospital equipment including assistance to use that equipment where required, without delaying access to timely care. This will require staff support, education, and training on making hospital equipment accessible as well as 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, including on the duty to report damaged or faulty equipment.

The committee proposes the following recommendations:

1. As part of the annual equipment planning process, an allocation shall be made for the purchase/repair/replacement of specialized equipment used to meet accessibility-related patient needs.
2. Hospitals shall ensure that the following mechanisms are in place to facilitate access to health services for patients with disabilities, including:
   1. Policies and procedures that outline for staff how to secure and ensure that patients have access to their personally owned essential devices/items at all times (including during a pandemic and emergency situations).
   2. Policies to identify accessibility equipment for general patient use.
   3. Regularly updating inventory and location of specialized equipment intended to accommodate patients with disabilities.
   4. Specialized equipment used to meet accessibility-related patient needs including assistive devices, communication devices/materials, medical equipment, etc.
   5. Education on the process to report damaged or faulty equipment in need of repair.
3. Information on how to use specialized accessibility equipment shall be displayed prominently both for patients and health care providers. Such information shall be available, upon request, in alternative formats and in both English and French.

Timeline:

Within one year of regulation being enacted.

Recommendation 5: funding for accessibility and accommodations for hospitals

Intent:

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

The committee proposes the following recommendation:

1. 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 such as personal support services, sign language interpreting, and communication assistance.
   
   Currently hospitals have flexibility in how current accessibility measures can be advanced using discretionary operating funds. This flexibility should be maintained even if any additional dedicated and/or restricted line-item funding is provided by the Ministry of Health.
2. As part of the hospitals’ annual equipment planning process, purchasing approvals under the new restricted funding shall be based upon the assessment of local needs and requirements. Purchasing approvals shall 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:

Within 18 months of regulation being enacted.

Recommendation 6: documenting and sharing an individual’s accessibility accommodations in hospital

Preamble:

Persons with disabilities are often adversely impacted during medical appointments, hospital visits, and when admitted to hospital because their accessibility requirements are not identified, nor documented and shared with the health care team. In addition, this critical information is often not communicated when individuals are transitioned within or between health care organizations.

With patient consent, the electronic health record (EHR) can be adapted to include confidential essential information about a patient’s accessibility requirements during all hospital interactions. It can also prepare the hospital to plan for and put these accommodations in place.

Examples of information that could be identified and documented about accessibility requirements in hospital may include, information about how the patient communicates; whether they use or require assistive devices; whether they have a support person and the role of that person; strategies for providing them with emotional support during stressful procedures; whether they require sign language or language translation; whether they have a legally appointed decision maker, etc.

Intent:

The intent of this recommendation is to ensure that the individualized information required to provide care to persons with disabilities is recorded consistently in the health record, and subsequently acted upon. Improving information sharing at the first point of contact with the hospital will facilitate continuity of care, including required accommodations, and ultimately improve the care experience for both the patient and the health care team.

The committee proposes the following recommendations:

The Ministry of Health, require all Electronic Health Record (EHR) vendors (and subsequently all hospitals in Ontario) to develop and include mandatory fields and/or information in the demographic/admission module of the EHR that outlines the identification and provision of accessibility accommodations and support requirements for all patients with disabilities.

Ontario hospitals shall also ensure that critical information about accommodations is reviewed and updated in the demographic/admission module with each admission, in order to facilitate continuity of health care information.

Ontario hospitals shall have policies, procedures, and practices in place that address hospital-wide requirements that ensure that the accommodation needs of persons with disabilities are identified, recorded, shared, and acted upon at each point of contact within the hospital. With consent, such information shall be shared by hospitals when transitions to community care are required.

These policies, procedures and practices include the following requirements, at a minimum:

1. Health care providers shall proactively offer all patients and/or their authorized support person an opportunity to identify their individualized accommodation needs.
2. If accommodation is required by the patient, hospital shall provide this accommodation, where possible/practicable, and identify it on the plan of care and state how these accommodations are to be provided.
3. With patient consent, hospitals shall share information on patient accommodation requirements within hospital health services and in discharge planning.

Timeline:

Hospitals shall update and implement policies and procedures within one year of regulation being enacted.

Appreciating that hospitals are at different stages of procuring and implementing their EHR, changes required shall be implemented at the next iteration of the EHR (within three years).

Recommendation 7: accessible and inclusive person-centred care philosophy: support for persons with disabilities including accommodations

Preamble:

As a mechanism to build an overall organizational culture of inclusion, it is important to ground such requirements within the principles of accessibility and shared accountability amongst all staff, physicians and volunteers working in hospitals. Hospitals shall ensure that their policies and practices empower staff to make the necessary changes required to accommodate patient needs. This can be amplified through the lens of accessible person-centred care; a philosophy embraced by all Ontario hospitals.

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 the planning and implementation of patient care.

The committee proposes the following recommendation:

All hospitals shall advance the culture of inclusion within their person-centred care philosophy. This will include ensuring that the person/patient and family-centred care activity within the hospital (including the mandatory education) reinforces practices that enable persons with disabilities to fully participate in their care. This includes reinforcing with staff that sufficient time shall be provided to ensure that persons with disabilities are able to be full participants in the design and delivery of their care. For examples of accessible services please review the glossary and recommendations 3, 6, 8, 9 and 15.

Timeline:

Within six to 12 months of regulation being enacted.

Recommendation 8: effective patient-provider communication in all healthcare services, and provision of informed consent

Preamble

Effective two-way communication is the foundation for all healthcare discussions and especially for the provision of informed consent to treatment. Persons who have disabilities in one or more of the following areas experience significant barriers to accessing health care with serious consequences:

1. understanding and remembering relevant healthcare information
2. having healthcare providers understand what they are communicating, and/or
3. making decisions about their treatment options

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. Therefore, in order to eliminate barriers when persons with disabilities interact with health care providers in all health care situations, persons with disabilities shall be provided with the accommodations necessary to ensure two-way communication.

Intent:

Members explored the links between capacity, consent, and effective, accessible two-way communication. The committee agreed that it is first and foremost critical that health care providers presume that all persons with disabilities have capacity unless there are reasonable grounds to presume otherwise. The recommendations, therefore, highlight the necessary accommodations, aids and supports that shall be available and provided to people with disabilities to facilitate effective communication in all health care situations, thereby ensuring fully informed consent and decision-making.

The committee proposes the following recommendation:

1. 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). These policies, procedures and practices shall include the following components:
   1. The requirement to identify, provide and document communication accommodations and supports that persons with disabilities may need to effectively communicate about their healthcare, to make decisions and provide informed consent.
   2. When the health care team is unsure, a process/mechanism shall be outlined for the health care team to access expertise to facilitate discussions and understanding of these discussions to ensure fully informed consent.
   3. The requirement to identify and provide formal qualified independent communication support (such as a speech language pathologist) in situations where persons with disabilities do not have the communication accommodations and supports they require to give informed consent.
   4. When the health care team becomes aware of/perceives a potential conflict of interest between the person with the disability and their family members or support person(s), a process/mechanism shall be outlined for the health care team to follow.

Timeline:

Within 18 months of regulation being enacted.

Recommendation 9: access to third-party supports

Preamble:

Hospitals have a duty to accommodate persons with disabilities to ensure access to hospital services. For some people, this means having support person(s) who know them well and/or have customized training to support them in one or more areas including, but not limited to: sensory disability support, communication, decision-making, emotional care and personal care (meals, positioning, transfers, set up and use of assistive devices).

Intent:

The intent of this recommendation is to address needed policies, procedures, practices, and training for hospitals when a person with disabilities uses third-party support services. The committee’s discussions highlighted that persons with disabilities who may have complex needs may prefer to use their own services due to familiarity, expertise, and safety. Committee members emphasized that hospitals, health care providers and support people work together in ways 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.

The committee proposes the following recommendations:

1. Hospitals shall ensure that there are policies, procedures and practices that facilitate persons with disabilities in accessing and utilizing their own third-party support services, as required by the patient and wherever possible, while in hospital. These policies, procedures and practices shall include the following components:
   1. The health care team shall identify, document and update when necessary, the support services that the person with disabilities requires while in hospital. This may include supports provided by family members and friends, agency services or other external support services as directed by the patient.
   2. If the person with disabilities chooses to use their own existing services, then the health care team (hospital health care providers and support persons), is required to utilize these services.
   3. The support person will assist the patient as directed by the patient and in consultation with health care providers.
   4. Documentation on the care plan regarding 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).
   5. If the person with disabilities does not have the communication assistance they require, the hospital shall refer to formal, qualified, independent communication support.
2. In consultation with Healthcare Insurance Reciprocal of Canada (HIROC), all hospitals shall have explicit policies, procedures and guidelines that enable the utilization of third-party providers to support patient care. These policies shall include, at a minimum:
   1. The mechanism the hospital will use to support the integration of the third-party provider into the care team.
   2. The effective management of the inherent and potential liability issues pertaining to safety, confidentiality, and privacy.

Timeline:

To come into effect immediately following a regulation being enacted.

Recommendation 10: development of mandatory education for health care providers and other health care workers or related staff

Preamble:

Currently, accessibility training for health care providers and other health care workers or related staff is typically inadequate and/or outdated. Moreover, this training is often done 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 shall begin early in their educational journey with mandatory training updates to ensure that the learning remains current.

Intent:

The intent of this recommendation is to ensure that health care providers and other health care workers or related staff workers are equipped with foundational knowledge for understanding disabilities and accessibility through an intersectional lens, understanding the Ontario Human Rights Code and how to apply its policies, procedures, and practices. The recommendation covers health care providers and other health care workers or related staff currently working in hospitals, as well as the next generation of health care providers completing their education and preparing for employment.

The committee proposes the following recommendation:

1. That the Ontario government, in partnership with persons with disabilities, patients, caregivers 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 providers and other health care workers or related staff to ensure that expectations are clear and that heath care workers feel prepared to provide barrier-free care.
2. The educational format shall contain mandatory components, clear learning objectives and be developed with modules with associated testing components throughout (similar to workplace safety format).
3. The curricula shall be updated every two years, or sooner, as knowledge and best practices evolve, and as regulations and legislation change.
4. The ministry shall amend the existing accessibility compliance report attestation to include a self-report indicator related to the percentage of staff compliant with the mandatory core curriculum related to AODA health care education curriculum.

Timeline:

Within 18 months of regulation being enacted.

Recommendation 11: mandatory core competencies

Intent:

This recommendation outlines the content that shall be included in accessibility training for all health care providers and other health care workers or related staff.

The committee proposes the following recommendation:

In addition to existing integrated and customer standards, the Ontario government shall address the following mandatory topics when developing standardized AODA health care education and training modules, including but not limited to:

1. An awareness and understanding of relevant legislative responsibilities pertaining to health care, including the AODA and Integrated Accessibility Standards, Ontario Human Rights Code, the Charter of Rights and Freedoms, Accessible Canada Act, and the UN Convention on the Rights of Persons with Disabilities.
2. Mechanisms to meet the requirements for an accessible patient relations process under the Excellent Care for All Act (ECFAA).
3. An awareness and understanding of person-centred care, as viewed through an intersectional lens. Special emphasis shall be placed on how to provide accessible health care, within an anti-ableist and intersectional framework.
4. An awareness of the historical context of disability including stereotyping and that the scope of disabilities is broad and can include those that are visible, non-visible, congenital, acquired, stable, intermittent, progressive, declared, and undeclared.
5. An understanding that every person with a disability presents with a unique profile, a profile that is often influenced by other intersecting identities and the presence of more than one disability at the same time. The manner in which persons with disabilities present to health care providers and other health care workers or related staff can therefore be highly variable, and highly complex.
6. An awareness and understanding of the different models of (or ways of thinking about) disability and how those models impact health care delivery.
7. An awareness and understanding of the duty to accommodate patients with communication and cognitive disabilities, and others who experience communication barriers, so that they might effectively communicate about their health care services, reveal, and exercise capacity and provide informed consent to treatment.
8. Familiarity with community-based services available to persons with disabilities and their linkages to health care services provided in hospital.
9. An understanding through current, evidence-based training that making health care accessible for patients with disabilities goes beyond a duty to accommodate. It includes health care providers and other health care workers or related staff taking 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. As required, training shall be available in accessible formats and English and French.
10. Policies, procedures, and practices to provide equitable access to services in emergency and pandemic situations.
11. Guidelines for working with essential third-party support persons, such as trusted non-paid, essential partners in care, and agency-purchased services, such as personal support workers, attendants, communication assistants, and people who assist with decision-making.
12. Safeguards and procedures to ensure that persons with disabilities can authentically communicate and direct their health care free from conflict of interest, undue persuasion, or coercion from other person(s).
13. Context specific training shall be provided for hospital staff relative to their role, position, and responsibilities. For example, intake/case managers shall be trained in how to identify, negotiate and document a person’s accessibility requirements while in hospital; personnel in intensive care units require training in the provision of communication aids for patients who become non-speaking due to trauma or neurological event; nurses and nurse practitioners shall be trained on transfer lifts; communications personnel shall be trained to develop information in easy read and plain language and first-person disability language; nurses, nurse practitioners and doctors shall have 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, etc.
14. To be effective, these modules need to be designed with input from and delivered by training teams that include people with disabilities, and shall be made accessible in alternative formats and English and French.

Timeline:

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

Recommendation 12: implementation of education and training in hospitals

Intent:

The intent of this recommendation is to outline how training for health care providers and other health care workers or related staff shall 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.

The committee proposes the following recommendation:

1. In addition to current training requirements under the Customer Service Standards in the Integrated Accessibility Standards Regulation, Ontario hospitals shall implement the government AODA health care education and training, specific to the duty to accommodate people with disabilities in hospital settings. Hospitals shall also provide specific training in healthcare standards, relative to their staff’s position and responsibilities, and include the core competencies outlined in recommendation 12.
2. In addition, hospitals shall supplement this education and training with specific requirements pertaining to their hospital, including:
   1. policies and procedures
   2. annual compliance report findings and action planning
   3. wayfinding
   4. website accessibility
   5. where and how to obtain support in order to provide individualized patient accommodations
   6. process or mechanism that outlines steps to take when health care workers perceive/become aware of conflict of interest between the person with the disability and their family members or support person(s) that may inhibit consent
3. All Ontario hospitals shall implement this mandatory AODA health care education for all new staff during hospital orientation.
4. This education shall be provided to all health care providers. This requirement shall be included in all contracts and/or agreements with third parties conducting business for/within the hospital.
5. 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, with appropriate penalty for non-compliance.

Timeline:

Within 18 months following a regulation being enacted.

Recommendation 13: education and 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, including AODA healthcare standards, Ontario Human Rights Code, the Charter of Rights and Freedoms, Accessible Canada Act, and the United Nations Convention on the Rights of Persons with Disabilities.

Intent:

The intent of this recommendation is to require regulated health professionals to demonstrate knowledge of Ontario’s accessibility laws 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.

The committee proposes the following recommendation:

1. That all regulatory professions under the Regulated Health Professions Act (RHPA),the Ontario College of Social Workers and Social Service Workers include:
   1. Matters pertaining to accessibility law in the jurisprudence/ethics component of their initial certificates of registration.
   2. Specific reference to and inclusion of the mandatory health care AODA competencies established by government, including AODA healthcare standards, Ontario Human Rights Code, the Charter of Rights and Freedoms and the United Nations Convention on the Rights of Persons with Disabilities in their entry-to-practice competencies (see Recommendation 12).
2. That the Ontario government mandate the responsible authorities to develop continuing education materials for regulated health professionals on working with persons with disabilities, including attention to intersecting identities. These materials shall be developed in conjunction with professional associations, education providers, and persons with disabilities.
3. That the Ontario government mandate the responsible authorities to develop a method by which all registrants acknowledge that they have read the accessibility legislation included under 1 and have completed continuing education specified under 2, on an annual basis.

Timeline:

1. If put into regulation, committee recommends it be implemented within 18 months following regulation being enacted.
2. Alternatively, this recommendation could be implemented through non-regulatory measures as quickly as possible following consultations with Ministry of Health, colleges under RHPA, the Ontario College of Social Workers and Social Service Workers.

Recommendation 14: hospital declaration of values

Preamble:

The Excellent Care for All Act, 2010 requires all hospitals to establish a Patient Declaration of Values. This declaration of values shall be developed in consultation with the public and shall be made publicly available.

In addition, on March 8, 2019, the Ontario government released the Patient Declaration of Values for Ontario developed by the Patient and Family Advisory Counsel (the PFAC) - a formal advisory body that provides advice and recommendations to the Minister of Health and Long-Term Care on issues pertaining to patients, families, caregivers and health systems. The declaration is centred on five core elements:

• respect and dignity
• empathy and compassion
• accountability
• transparency
• equity and engagement

Upon review of the declaration, the committee determined that if these critical value statements were fully embodied by Ontario hospitals, there would be a more inclusive culture in health care organizations. However, it is not binding on hospitals nor health care providers.

Intent:

The following recommendations, therefore, build on this work and the existing ECFAA requirements, in order to further embed in every hospital’s declaration, a clear commitment to accessibility and to a patient’s fundamental rights. In addition, these recommendations would require all hospitals to adopt the same core values, building consistency in expectations across the system.

The committee proposes the following recommendation:

1. That the Excellent Care for all Act, 2010 (ECFAA) be amended to reflect the requirement for all Ontario hospitals to adopt the Patient Declaration of Values for Ontario (2018) developed by the Minister’s Patient and Family Advisory Committee (PFAC).
2. That every hospital shall review and amend their declaration of values, ensuring that ALL components of the Provincial Declaration of Values (developed by the PFAC) are included.
3. In addition, every hospital’s declaration of values shall:
   1. include a commitment statement to accessibility, inclusion, and diversity
   2. include an explicit reference to the hospitals’ patient relations process that ensures the rights of patients to raise concerns and make complaints without fear of reprisal
   3. be made available in alternative and accessible formats, in both official languages and posted in public places throughout the hospital
4. That all health service providers within hospitals shall formally acknowledge in writing (or accessible format) their understanding, adherence, and commitment to AODA standards and the hospitals’ declaration of values. This acknowledgement includes that they will provide care of the same quality on the basis of free and informed consent, adherence to human rights, intersectional lens and respecting the dignity, autonomy, and diverse needs of persons with disabilities.
5. That this acknowledgement shall be signed annually in alignment with the hospitals’ mandatory annual AODA Core Curriculum.

Timeline:

Within the hospitals’ multi-year accessibility plan updates, following the regulation being enacted.

Recommendation 15: patient relations and complaints process

Preamble:

The Excellent Care for All Act, 2010 (ECFAA) requires all hospitals to have a robust patient relations process. This process includes mechanisms for patients to provide feedback to the hospital, in the spirit of quality improvement and through the lens of person-centred care.

However, persons with disabilities have experienced adverse responses and inaction when making a complaint and may fear reprisal. Therefore, individuals are often hesitant to make a complaint about health care providers or hospital services despite 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.

It is also recognized that certain accessibility and disability-related complaints are urgent, in particular in an emergency or pandemic context, 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.

Intent:

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.

The committee proposes the following recommendation:

1. That the Ontario 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 shall be “fully accessible and in alternative 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. This must include consultation feedback received as part of the hospital’s person-centred care activity.”
   
   “Hospitals shall put processes and procedures in place that enable the patient relations process delegate to fulfill their responsibilities. Hospitals shall make contact information for the patient relations process delegate publicly available, “fully accessible and in alternative formats as requested, and in both official languages.”
2. In addition, it is recommended that the Ontario government augment the 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, processes and requirements:
   1. A timely, effective, and documented process to address a patient’s individual accessibility concerns and complaints.
   2. To make available and post in a publicly accessible space and alternative formats upon request, the process by which patients can make complaints without fear of reprisal. The complaints process shall be fair and transparent with no conflict of interest.
   3. To provide information to patients on the complaints and patient relations processes at a patient’s first interaction or encounter within the hospital.
   4. As part of the patient relations process, a prioritization mechanism shall be in place to manage urgent complaints. This includes identifying whose role it is to manage complaints, and expectations for responsiveness (for example, within 48 hours). This could include complaints related to essential visitor designations or COVID‑19 related medical triage protocols.
   5. The provision of alternative, accessible formats to report a complaint or concern.
   6. A process for reviewing and updating policies, procedures and practices based on complaint patterns, and to carry out this review on a regular basis.
   7. While maintaining patients’ confidentiality, a hospital shall post quarterly in a publicly accessible space, information pertaining to complaints, received about accessibility and their resolutions.
3. Hospitals shall create easy to read and plain language guides, fact sheets or toolkits related to their patient relations processes that describes:
   1. how to access patient relations
   2. the process for making a complaint, including how to prepare for a call with patient relations
   3. the patient relations escalation process, as well as any appeal processes
   4. how to participate in a patient experience survey/process that is intended to capture through an intersectional and equity lens, a better understanding of patient experiences within the health care setting
   5. this information will be provided in alternative formats and in both official languages and can be made available in other languages as required

Timeline:

To be implemented on a three-year cycle.

Recommendation 16: 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.

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.

The committee proposes the following recommendation:

1. That the Ontario government, through Ontario Health/Health Quality Ontario or the appropriate governing body, advise Accreditation Canada/Commission on Accreditation of Rehabilitation Facilities (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 shall be completed by 2025.
2. That the Ontario government request that the governing body of Accreditation Canada undertake this initiative with the involvement of both persons with lived experience of disability and with disability organizations (“Disabled Peoples Organizations”).
3. That hospitals need to provide access to their report and action plans, as well as general information about the Accreditation Process in a publicly accessible space and made available in alternative formats and in both English and French upon request.
4. That the Ontario 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 shall consist of best practices in AODA compliance, as well as tips on leveraging existing resources and requirements. The toolkit shall include, but is not limited to, any information, documents and resources included in this report’s appendices.

Timeline:

Revisions to accreditation standards shall be completed by 2025.

Recommendation 17: compliance enforcement

Preamble:

Despite the current compliance requirements, committee members’ experiences suggest that there is an ongoing discrepancy between compliance results (for example, attestation reporting) and implementation of the current standards in hospitals. For example, a review of hospital websites reveals that they are largely non-compliant with current accessibility requirements. As such, there needs to be a focus on and strengthening of government accessibility compliance mechanisms for the Accessibility with Ontarians with Disabilities Act, 2005. In addition, there needs to be greater transparency regarding a hospital’s performance in achieving accessibility compliance. This would increase communities’ understanding of the accessibility of hospitals they are visiting and/or accessing for care, as well as enabling individuals to determine the level of accessibility progress of each hospital.

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 shall be stronger. The intent of the recommendation is to create a new site visit/inspection requirement, in addition to the existing self-reporting and auditing framework. As well, the recommendation provides additional funding to assist with hospital compliance (where appropriate), as well as reinforcing potential penalties for hospitals in situations where compliance is significantly lacking.

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 shall 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 shall 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. This site visit would be similar to Accreditation Canada, whereby evidence of compliance shall 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 for all Ontario hospitals within a five-year window. Failure to meet requirements outlined in the site visit by an agreeable timeline, would result in enforcement measures under the AODA.
3. That the result of the compliance audit/visit shall be publicly displayed in an accessible space, fully accessible, and available in alternative formats and in both English and French.
4. That every year, as part of every hospital funding agreement with the Ontario government, each hospital’s accessibility plan shall address the weaknesses and barriers to accessibility that have been documented by the hospital through their ongoing evaluation processes such as:
   1. any independent evaluation
   2. patient complaints
   3. patient relations feedback mechanisms (including survey results)
   4. the results of the hospital’s AODA self-assessment and recommendations from the site visit (if applicable)
5. That all hospital accessibility plans shall, under the regulation, be uploaded into a searchable public database (created by the ministry responsible for the AODA).
6. That the ministry shall amend the existing accessibility compliance report attestation to include a specific requirement regarding the hospital’s patient relations process, ensuring that it is publicly displayed, fully accessible and available in alternative formats and in both English and French. Evidence of this requirement will be part of the validation site visit to ensure full compliance with an accessible patient relations process.
7. That every hospital and health care facility in Ontario shall develop fully accessible webpages in accordance with the information and communications standards (for example, aligned with WCAG 2.0 Level AA) 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
8. That the Ontario government develop a capital infrastructure funding mechanism to comply with accessibility requirements outlined in compliance accessibility plans and site visit audits. This funding model will have equitable criteria that is inclusive and fair to all hospitals.

Timeline:

Within 18 months of the regulation being enacted.

Recommendation 18: enforcement strategy and framework – hospital accessibility standards

Preamble:

In addition to the recommendations that the committee has made to enhance 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 upon 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.

Intent:

The intent is that hospitals and the Ministry for Seniors and Accessibility will work together on identifying goals with firm timelines and establish a collaborative and rigorous approach to enforcing compliance with accessibility requirements in the hospital sector, and to provide transparency to the public. Full implementation of accessibility can fall short of its goals if it is not enforced.

The committee proposes the following recommendation:

1. That 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. That the enforcement strategy shall 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. That the enforcement strategy and framework shall have the following characteristics:
   1. Government shall work cooperatively and constructively with hospitals to remove and reduce existing and reasonably foreseeable (new) accessibility barriers in preparing the enforcement strategy and framework.
   2. Government shall clearly communicate how it will assess and verify compliance within each hospital, with associated timelines.
   3. Consider any potential extenuating circumstances that prevented the hospital from achieving agreed upon accessibility goals before applying enforcement actions if requirements or agreed upon goals have not been met.
   4. Include a transparent mechanism by which monetary and/or non-monetary enforcement actions will be taken if compliance is not achieved.
   5. Include a mechanism to reward all high performing hospitals with a “gold standard”, whereby additional funding is made available to implement additional best practices as part of their specific accessibility improvement plans.
4. That the enforcement strategy and framework shall be publicly available once complete. This shall include being posted online, in both official languages, subject to the accessibility requirements of the Information and Communication Standards.
5. That each hospital’s agreement and goals shall 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. That the Ontario government shall 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 shall update the framework, incorporating changes, as appropriate.
7. That the Ontario government shall create a searchable database that will be available to the public and include for every hospital:
   1. All infractions and non-compliance to hospital accessibility regulations along with its mandated annual accessibility plans.
   2. Identification of all high-performing and compliant hospitals.

Timeline:

To be implemented by no later than 2025.

Recommendation 19: public education and outreach

Preamble:

The right to equal access to goods and services, includes hospital services. This right is enshrined in the AODA, the Ontario Human Rights Code, the Canadian Charter of Rights and Freedoms, and The United Nations Convention on the Rights of Persons with Disabilities. Yet, there is a lack of awareness about what this means for Ontarians within hospital services and the impact of rights violations for people who have disabilities. Without information about accessible health care, people with disabilities and the general public may be uninformed or unable to exercise their right to equal access to these services.

Intent:

These recommendations intend to increase awareness of all Ontarians about the AODA Health Care Accessibility Standards and their right to accessible hospital services.

The committee proposes the following recommendation:

1. In partnership with persons with disabilities and disability organizations, the Ontario government shall create a public education and outreach campaign to inform Ontarians about the AODA Health Care Accessibility Standards and patient accessibility rights when using hospital services. This would include, but not be limited to information about:
   1. The AODA Health Care Accessibility Standards.
   2. The right to receive equal access to hospital services in ways that respect the dignity, capacity, and privacy of all patients, including patients with disabilities.
   3. The requirement for accessible hospital buildings, spaces, and medical equipment.
   4. The requirement for accessible signage and wayfinding.
   5. The right to receive oral and written health care information in ways that are accessible and understandable.
   6. The right to access personal communication devices and support persons, when required, for effective communication.
   7. The right to request and obtain written information (either digitally or in print) and reports in alternative formats.
   8. The right to access one’s personal health care record in accessible formats.
   9. The right to access the Patient Relations Department within the hospital to provide feedback, or to make a complaint without fear of reprisal.
2. The public education/outreach campaign shall be distributed in alternative formats, and available in both French and English. It will be distributed via federal and provincial programs, as well as primary care offices, disability organizations, community health centres, etc.
3. The public education and outreach campaign shall also include resources to empower people with disabilities to learn about, communicate and exercise their accessibility rights and requirements in healthcare services.

Timeline:

The Ontario government shall pursue this outreach recommendation as soon as possible.

Recommendation 20: access to health services for persons with disabilities during a declared provincial emergency situation

Preamble:

The recent COVID‑19 pandemic revealed many cracks in our health care system. It became evident that many persons with disabilities experienced significant challenges accessing health services during this time. Through committee deliberations it was determined that accessibility standards are needed in all settings, not only hospitals, and their implementation shall be considered by health care providers and administrators across the spectrum.

As a result, the committee’s recommendations extend to all sectors of the health care system, including long term care homes, home and community care, outpatient and ambulatory care centres, primary care clinics/community health centres, freestanding diagnostic imaging and laboratory facilities, medical clinics and all other agencies providing health and support services to Ontarians.

It shall be noted that this crisis had a personal and professional impact 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. Given this reality, the committee felt strongly that these individual experiences shall be discussed and then reframed as potential consideration for Government.

However, it is also noted that this does not constitute a comprehensive and fulsome review of the impact; but merely the “tip of the iceberg” with respect to the required changes necessary to ensure the persons with disabilities can access essential health services during such a crisis.

These recommendations for consideration stemmed from concerns expressed by members including 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 any medical triage process or protocol. 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 from racialized communities, Francophone communities, LGBTQ2S+ people, lower-income communities, and persons with disabilities, including those living in congregate environments, such as group homes or long-term care homes.

Intent:

This recommendation was developed by the committee based on personal and professional experiences and insights during the COVID‑19 pandemic. The recommendations are intended to ensure that:

1. the lessons learned from the COVID‑19 crisis can be analyzed and subsequently utilized to guide government policy in any future emergency situations, and
2. the needs of persons with disabilities are considered in real time by government during any future emergency situations.

The committee proposes the following recommendation:

1. Government shall conduct a review of the impact on persons with disabilities of the implementation of the policy and guidance documents provided to health care providers through Ontario Health during the COVID‑19 crisis in Ontario. This review will:
   1. be undertaken in collaboration with an advisory committee consisting of persons with disabilities and other health service representatives as deemed appropriate
   2. include an analysis of the data (coordinated with public health units, other public sector partners and impacted stakeholder groups) in order to better understand and quantify the impact of the COVID‑19 crisis 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:
      • people who are Black, Indigenous, and people from racialized communities
      • Francophone populations
      • persons who are LGBTQ2S+
      • lower-income communities
      • persons with disabilities living in congregate environments, such as group homes or nursing homes
      These data and subsequent reporting shall be used to underpin an intersectional as well as an equity and disability lens for future planning.
   3. include the successes and failures of measures taken by heath care facilities in relation to persons with disabilities and their access to health care during the declared state of emergency
   4. include tangible recommendations pertaining to improving access to health services in future health emergencies
   5. include a public final report that will be posted in alternative and accessible formats in both official languages
2. In the event of a subsequent state of emergency and following a declaration of a state of emergency under the Emergency Management and Civil Protection Act, government shall establish an advisory panel, directly reporting to health officials, to provide guidance throughout the ongoing state of emergency. The advisory panel shall be internal to the health care system and include a majority of members who have lived experience of disability.

Timeline:

The review shall be conducted immediately after the regulation being enacted.

The advisory panel to be established at the beginning of any future state of emergency.

Additional committee considerations pertaining to the COVID 19 pandemic and its impact on Ontarians with disabilities

1. Mandatory masking: Government develop authoritative and clear guidance, to be provided as a clarifying resource for municipalities and the public when mandatory masking orders are in effect. Mandatory masking orders typically require the use of face coverings or masks, which often impedes communication. Guidance should:
   1. include additional information on when exemptions may be required for persons with disabilities
   2. include 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. include the importance of the availability of clear masks for improved communication in line with public safety guidelines
2. Access to pharmacy services: 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, options for delivery and curbside pickup, as well as ensuring that services are provided in a timely manner.
3. Emergency management policies and guidance: Government conduct a broad review of emergency management policies and processes, and update policies based on a disability and universal design lens every two years, or more frequently if required. 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. working with partner organizations to ensure that accessible and easy to understand information is made available to individuals with cognitive or developmental disabilities and their support person(s)
   3. ensuring press conferences and other emergency updates are supported by sign language interpretation (ASL and LSQ) and Communication Access Realtime Translation provided by accredited steno captioners at the time of the event
   4. ensuring that human rights and accessibility requirements are reflected in all policies and procedures
4. Vaccination and testing: During a pandemic, government provide guidance to testing and vaccination centres on being fully accessible and organizing 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.
5. General considerations: Government work with hospitals, other public sector partners and stakeholder groups 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 be made public and 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 and especially those living in rural and remote communities, including but not limited to First Nation communities, 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 and support animals in an infection-control framework
6. Information and Communication: 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 alternative formats available.

Conclusion

These final recommendations were revised by the committee and are intended to address barriers to accessibility that persons with disabilities may encounter at any stage of their patient journey. Recommendations are also intended to encourage hospitals to think differently and find ways to adapt current systems for better accessibility.

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)
• Ms. 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 and founder of the Ontario Health Care Network of Accessibility Professionals (OHCNAP)
• Dr. Yona Lunsky, Centre for Addiction and Mental Health
• Lorin MacDonald, human rights lawyer and accessibility subject matter expert
• Melanie Marsden, 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

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 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 is analogous to and intersects with other forms of discrimination, such as racism, sexism, and ageism. 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.

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 easy read and plain language documents and materials), accessible online feedback mechanisms (such as surveys, questionnaires), timing requirements (that is, shall 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 information is understood as information provided in formats that allow every user and learner to access content ‘on an equal basis with others’ (UNCRPD). Accessible information is ideally information that:

• allows all users and learners to easily orientate themselves within the content
• can be effectively perceived and understood by different perception channels, such as using eyes and/or ears and/or fingers

Accessible services

Accessible services include, but are not limited to procedures and guidelines for respectful, anti-ableist interactions with patients of all ages, and who have different accessibility requirements; understanding and exercising the right of all persons with disabilities to identify and receive the accommodations and supports they require to exercise their right to equal access to health care services, such as procedures to negotiate flexible appointment times, accommodate environmental requirements such as noise reduction, lighting, scent and chemical sensitivities and accessible telephone and telehealth options.

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.

Accessibility Lead/Consultant:

The accessibility lead/consultant can be an existing employee or a new role. The individual should have expertise/knowledge of universal (inclusive) design and accessibility accommodations and supports for a range of accessibility requirements. The role will be accountable for:

• implementation of the new core curriculum requirements for the health care standards
• developing and implementing accessibility policies, procedures, and safeguards throughout hospital services
• promoting awareness of the health care standard within the hospital and community served
• engaging people who have disabilities and community-based disability organizations for their input
• collaborating with other accessibility leads/consultants on the implementation of the healthcare standard and relevant research initiatives relating to access to hospital services

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 including 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.

Aggregate data

Aggregate data refers to numerical or non-numerical information that is:

1. collected from multiple sources and/or on multiple measures, variables, or individuals and
2. compiled into data summaries or summary reports, typically for the purposes of public reporting or statistical analysis — such as, examining trends, making comparisons, or revealing information and insights that would not be observable when data elements are viewed in isolation.

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 shall 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, including but not limited to, racialization, gender, sexual orientation and identity, disability, age, class, occupation, and social service usage, which 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).

Assistive devices

Items that a patient may need or use for daily living. Examples include but not limited to wheelchairs/mobility aids, lifting aids, hearing aids, glasses and visual aids, communication aids, adapted call bells, memory aids and customized eating/drinking utilities. Depending on the needs of the patient, assistive devices may be owned by a patient with a pre-existing disability or provided by the hospital for duration of hospital stay.

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 devices, adapted computers, hearing aids, switches to operate devices, eye gaze technology and 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 and emotional care and/or assistance to make decisions. Support person(s) can be family members, friends or paid service providers - regulated or unregulated. They are not substitute decision makers.

Autonomy

The capacity to make an informed, uncoerced decision. The right to personal autonomy and self-determination is protected under the Ontario Human Rights Code. In Ontario, adults are presumed to be capable, depending on the type of decision being made, unless there are reasonable grounds to believe otherwise.

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 by an accredited stenographer 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. This provides superior accuracy compared to auto-generated captions powered by Artificial Intelligence (AI).

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, easy read and plain language materials, pictures to support comprehension, easy reading, and alternative-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.

Dignity

The right of a person to be valued and respected for their own sake, and to be treated with respect. The Ontario Human Rights Code recognizes the inherent dignity and worth of every person. The committee recognizes that the dignity of persons with disabilities should be recognized as inherent and equal to that of any other patient.

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 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, and can be acquired or 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.

Discrimination

Discrimination is not defined in the Code but usually includes the following elements:

• not individually assessing the unique merits, capacities, and circumstances of a person
• instead, making stereotypical assumptions based on a person’s presumed traits
• having the impact of excluding persons, denying benefits, or imposing burdens

Many people wrongly think that discrimination does not exist if the impact was not intended, or if there were other factors that could explain a particular situation. In fact, discrimination often takes place without any intent to do harm. And in most cases, there are overlaps between discrimination and other legitimate factors.

Diversity

Diversity means more than just acknowledging and/or tolerating difference. Diversity is a set of conscious practices that involve:

• understanding and appreciating interdependence of humanity, cultures, and the natural environment
• practicing mutual respect for qualities and experiences that are different from our own
• understanding that diversity includes not only ways of being but also ways of knowing
• recognizing that personal, cultural and institutionalized discrimination creates and sustains privileges for some while creating and sustaining disadvantages for others
• building alliances across differences so that we can work together to eradicate all forms of discrimination

Diversity includes, therefore, knowing how to relate to those qualities and conditions that are different from our own and outside the groups to which we belong, yet are present in other individuals and groups. These include but are not limited to age, language, culture, ethnicity, class, gender, physical abilities/qualities, race, sexual orientation, as well as religious status, gender expression, educational background, geographical location, income, marital status, parental status, and work experiences.

Easy Read documents

Easy English is a writing style that helps people who find it hard to read and understand English. It is simpler and has a lower reading level than Plain English. Easy English is also called easy-to-read or Easy Read. You’ll recognise this style as it uses short sentences with an image or picture to depict concepts where possible – specific for people with intellectual disabilities.

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 or essential partner in care

The term 'essential caregiver' or ‘essential partner in care' 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.

Equity

Equity is the removal of systemic barriers and biases enabling all individuals to have equal opportunity to access and benefit from services.

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 (using speech as the primary mode of instruction).

Health care provider

Broadly describes all workers responsible in any way for the delivery of health care services in a hospital. This can include health care professionals from regulated health professions, contract professionals, hospital workers, volunteers, and 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.

Inclusion

Inclusion is seen as a universal human right. The aim of inclusion is to embrace all people irrespective of race, language, culture, gender, disability, medical or other need. It is about giving equal access and opportunities and getting rid of discrimination and intolerance (removal of barriers). It affects all aspects of public life. Inclusion is the practice of ensuring that all individuals are valued and respected for their contributions and are equally supported.

Inclusive design

Inclusive design takes into account differences among individuals and groups when designing something (for example, policies, programs, services, buildings, shared spaces) to avoid creating barriers.

Inclusive design is about making places that everyone can use. The way places are designed affects our ability to move, see, hear, and communicate effectively.

Inclusive design aims to remove the barriers that create undue effort and separation. It enables everyone to participate equally, confidently, and independently in everyday activities.

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 importance 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 disabilities

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 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, or 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. When authorized by a patient with a pre-existing communication disability, a PSW or attendant may assist with communication.

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.

Publicly accessible spaces

Publicly accessible means in an area that is visible from multiple viewpoints and open to the general public. These could include the lobby, waiting areas and rooms, service counters, reception areas, corridors and vertical connections.

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.

Social determinants of health

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.

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.

Third-party support services

Third-party support services are provided to a patient while in hospital by individuals not employed by the hospital, to support them in one or more areas such as: sensory support, communication, decision-making, personal care (meals, positioning, transfers, set up and use of assistive devices).

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.