Submission of 
ARCH Disability Law Centre 
to the Health Care Standards Development Committee regarding its 2021 Initial Recommendations Report
55 University Avenue, 15th Floor, Toronto, ON, M5J 2H7
Phone: 416-482-8255 or 1-866-482-2724
TTY: 416-482-1254 or 1-866-482-2728
www.archdisabilitylaw.ca 
 @ARCHDisabilityLawCentre
@ARCHDisability

Table of Contents

Executive Summary
I.	About ARCH
II.	Introduction
III.	Guiding Principles
IV.	Community Input on Barriers to and Recommendations for Health Care
V.	INITIAL RECOMMENDATIONS
The Scope of the Initial Recommendations for a Proposed Health Care Standard
1.	Accessibility planning and engagement with persons with disabilities
2.	Consultation on procurement or facilities
3.	Access to equipment
4.	Accommodations funding for hospitals
5.	Coordination of accessibility accommodations
6.	Electronic health records
7.	Support for accommodations and patient-centred care
8.	Communication accommodation and respect for capacity
9.	Access to third party supports
10.	Effective communication and informed consent
11.	Development of education and training in hospitals and colleges
12.	Implementation of education and training in hospitals
13.	Training resources and core competencies
14.	Training for regulated health care professionals
15.	Hospital Declaration of Values
16.	Accessible Patient Relations Process
17.	Accessible complaints process
18.	Accreditation
19.	Compliance enforcement
20.	Enforcement strategy and framework – hospital (health care provider) accessibility standards
21.	Outreach
22.	Accessibility and disability during a pandemic or emergency situations
Conclusion

Executive Summary 
1.	Hospitals, diagnostic centres and/or rehabilitation services coordinate and make available accessible transportation services to and from local community transportation hubs to the health service provider.   
2.	Sexual and reproductive health information must be provided to improve the delivery of advice, information, and services to persons with genetically linked disabilities.
3.	The provision of any language interpretation service would benefit from clear direction and sufficient funding from the Ministry of Health, on the legal obligations to provide sign language interpretation to individuals who require it in receipt of all health care related services. 
4.	Pharmacies must provide clear communication and alternate formats to ensure prescription labels and information about medications are accessible to all persons with disabilities.
5.	The Ministry of Health investigate OHIP coverage for preventative therapies or those therapies that help to maintain optimal health for persons with disabilities.  Persons with disabilities must be included in this investigation.
6.	All health services providers must use the least toxic cleaning products available.  Everyone benefits from fewer pollutants in our air.
7.	All health service providers must receive training on the difference between scent-free and fragrance-free.
8.	All health services providers must have and enforce scent-free policies, and must develop air quality policies.
9.	These policies must be accompanied with public and professional education, to promote an understanding of their importance as preventative health measures that will benefit all.
10.	Fragrance-free policies must be enforced.
11.	All health care providers must be trained in disability awareness and sensitivity, particularly for genetically linked disabilities.
12.	The SDC review all information provided in the Preamble, or elsewhere, and wherever possible, propose recommendations that capture the information, intent and guidelines discussed.
13.	All recommendations must include measurable goals.
14.	Wherever possible, the Health Care SDC must incorporate all other applicable AODA Standards by specific reference so that there is no mistake that these Standards interact in a harmonious way to achieve accessibility in Ontario by 2025.
15.	Prescriptive language must be used throughout the Standard. 
16.	The Health Care Standard must advise health care providers and the public that meeting its requirements does not relieve health care providers of their obligations to accommodate to the point of undue hardship under Ontario’s Human Rights Code and pursuant to s. of the AODA.
17.	These Initial Recommendations must apply to all health care settings.  
18.	 In the alternative, the SDC must review these Initial Recommendations and identify which ones apply only to the hospital sector, and which ones could apply more broadly, to all health care settings and/or providers.
19.	In the further alternative, this SDC must recommend that a new SDC be appointed immediately to develop an additional Health Care Standard that would apply to all health care settings other than hospitals.
20.	Health service providers shall consult whenever new and emerging issues arise. At the very least, health providers must consult annually with persons with disabilities or the organizations led by them, to receive input from them in matters related to health service planning, quality improvement and capital expense planning.
21.	Health service providers will meaningfully consult with persons with disabilities and organizations comprised of persons with disabilities. Their contributions will be reflected and included in any and all health services communications.
22.	To demonstrate a commitment to disability engagement, and as an additional accountability measure, health providers must publish an annual report, including: accessibility issues consulted on; the composition of consultation groups; a summary of the discussions and opinions offered; recommendations and the information used to support them; and a timeline for implementation.  
23.	Consultation participants must receive an acknowledgement of their contributions by way of financial remuneration or a daily stipend.  
24.	All expenses incurred by persons with disabilities will be reimbursed.
25.	Health care providers must create a policy requiring that all new facilities, or renovations, incorporate principles of universal design.  
26.	Research and development of accessible equipment for health service providers be continued.
27.	When equipment needs to be replaced or changed, the most up to date and accessible equipment be procured.
28.	Health service providers must receive up to date training, on an annual basis, about creating inclusive spaces to remove attitudinal barriers and ensure equal delivery of health services.
29.	Existing facilities must be updated to ensure there are fully accessible washroom on every floor.
30.	Signage must be accessible to all persons with disabilities, and be in clear and accessible language and in alternate formats.
31.	All accommodations provided to persons with disabilities while in a health care setting will be free of charge.	
32.	Health care providers must provide accessible information to persons with disabilities about mobility aids, devices and assistive technologies, including new technologies as well as other forms of assistance, support services and facilities.
33.	The government of Ontario fund, and the Ministry of Health and health services providers, undertake and/or promote research and development of universally designed goods, services, equipment and facilities, as defined in article 2 of the CRPD, which shall require the minimum possible adaptation and the least cost to meet the specific needs of a person with disabilities, to promote their availability and use, and to promote universal design in the development of standards and guidelines.
34.	The Government of Ontario fund health providers to undertake or promote research and development of, and promote the availability and use of, new technologies, including information and communications technologies, mobility aids, devices and assistive technologies, suitable for persons with disabilities, giving priority to technologies at an affordable cost.
35.	The coordination of accommodations not be limited to hospitals, and must apply to all health service providers. 
36.	Care plans must identify appropriate accommodations so that these accommodations will be provided in a new health setting without delay.
37.	This SDC must revise this recommendation and ensure that it addresses: who will have access to electronic health records; how inaccurate information can be amended; who the health record belongs to; and whether the person with a disability can share the information on their electronic health records with others.
38.	The Information and Communication Standard be explicitly incorporated by reference into this recommendation.
39.	Health records are to specifically include accommodations plans and those plans will be available to share with other health service providers.
40.	Persons may continue to have access to paper records upon request, inaccessible formats and at no cost to them.
41.	All health providers adopt and implement the principles and philosophy of independent living within their organization.
42.	Any and all accommodations are made available and in place to ensure that the person with a disability is respected as an essential decision-maker in all aspects of their care.
43.	 Health service providers must collect and report to the MOH that persons with disabilities have been involved in the creation of their plan of care.	
44.	All health service providers must create policies to ensure persons with disabilities are at the centre of their own care. This recommendation could also be part of the Hospital Declaration of Values, recommendation 15.
45.	Persons with disabilities must be consulted and participate in the delivery education to health service providers and staff.
46.	In addition to education, health service providers must create a policy which specifically details what staff must do to comply with the person-centred care model, when providing service to persons with disabilities.
47.	Every health care provider must have policies to ensure appropriate and effective safeguards are in place to prevent abuses of decision-making capacity by third parties.
48.	Measures relating to safeguards must ensure that the rights, will and preferences of the person with a disability are free from conflict of interest and that the preferences of the person are free from undue influence.
49.	Powers of Attorneys must be subject to scrutiny to ensure they are properly used in circumstances prescribed by the person with a disability.
50.	The Government of Ontario explore and implement additional means by which persons with disabilities can exercise their legal capacity, including supported decision-making.
51.	When a person with a disability is admitted to a health care setting for more than one overnight, a support team will ensure that any community supports or services the person had before admission will continue uninterrupted after their discharge from hospital.
52.	Before engaging “non-medical” support services of any kind, the person with a disability must consent to the supports being offered and who will be providing the supports.
53.	Discharge planners will investigate the community support options available to a person with a disability upon release from hospital.
54.	Discharge planner will help the person with a disability fill out any forms required for support services.
55.	Discharge planners will discuss funding sources and costs of support services with the person with a disability.
56.	Education modules must take in to consideration all persons who provide health services to persons with disabilities, and not just those who work in hospitals.
57.	The SDC specify how this training can be provided to all other health service providers, including persons who provide services at clinics, long-term care, and home and community care.
58.	The creation of these modules be developed and delivered in partnership with persons with disabilities.
59.	Thorough consultation be done to ensure that all relevant topics are included in training resources and core competencies. 
60.	Modules on the Ontario Human Rights Code and the Charter of Rights and Freedoms should be added to the list. 
61.	Persons in leadership roles will model a commitment to accessibility and inclusivity in all health settings.
62.	Health providers will adopt a Declaration of Values that provides for care of the same quality on the basis of free and informed consent, raising awareness of the human rights, dignity, autonomy, and needs of persons with disabilities through training and the promulgation of ethical standards for private and public health care.
63.	Health service providers must acknowledge their adherence to all AODA Standards to the extent that they apply.
64.	Health service providers must commit to protecting integrity of the person with a disability.
65.	A health service’s Declaration of Values must incorporate a Patient Bill of Rights.
66.	Hospitals must create plain language guides, fact sheets or toolkits that describe: how to access patient relations; how to prepare for a call with patient relations; and the process for making a complaint, as well as any appeal processes. These documents will provide templates for letters and other communications.  They will also offer resources for support throughout the complaints process.
67.	This information will be provided in alternate formats and in languages other than English. 
68.	Regulatory bodies governing health professionals must also provide information about how to make a complaint in case persons with disabilities against a regulated health professional including the same information as above.
69.	The SDC specify timelines for response to complaints, both for emergency complaints and non-emergency complaints. Without timelines health service providers won’t be held accountable for failing to respond to a complaint in a timely fashion. 
70.	On first contact with the health service provider a person with a disability will be advised on the complaint processes available to them.
71.	Financial penalties shall be enforced for non-compliance with the Health Care Standard.
72.	All health service providers be covered under this recommendation.
73.	The preamble of this recommendation outlines that Recommendation 22 should apply to health care providers and should not be limited to hospitals. The recommendations themselves do not state this clearly enough. The recommendations must mirror the preamble, and apply to all health service providers.
74.	The second recommendation refers to data collection and reporting on the impact that the pandemic had on persons with disabilities. ARCH recommends that a data collection and review process be designed in partnership with the groups listed from A-E. These groups are experts and they will know which questions to ask, and which areas need to be focused on.
75.	With respect to recommendation 3, ARCH wants to make clear that these guidance documents do not replace any by-laws and regulations. Rather, they are to be used to provide information about any mandatory mask laws or directives. 
76.	For the 4th recommendation, the guidance documents should be created for each facet of health service provision and not just be provided to pharmacies and health care product vendors. 
77.	Recommendation 5 should outline that the broad review of emergency management policies should be done through the lens of universal design.
78.	Recommendation 6 should be expanded to not only include testing centres, but also require that vaccination centres should be fully accessible. In addition to making these sites accessible to persons with disabilities, the guidance document(s) should also touch on giving access to those groups mentioned in recommendation 2 and in doing so be in line with the social determinants of health.
79.	The 7th recommendation should specify that in addition to working with hospitals and public sector partners, the Ministry must also work directly with persons with disabilities to determine how to effectively apply a disability lens in emergency situations.
80.	Recommendation 7 would benefit from being divided into separate recommendations. Each issue raised in recommendation 7 is significantly important, and this will be lost in the drafting of the standard.  For example, the recommendation under 22 - 7(a) touches on the triage protocol, however it provides no context or information on this topic. Another example is recommendation 22 - 7(h) on visitation bans. ARCH heard from a number of members of our community that they were unable to have their support person with them as a result of these policies. Although ARCH appreciates that it is mentioned, and agrees with the recommendation, it seems odd that it is mentioned in the same recommendation as the triage protocol and home and community services. In addition by lumping these issues in to one subset of a recommendation, the importance of the issues is minimized.
81.	Throughout the entire recommendation, the SDC often uses the term guidance documents. ARCH asks the SDC to provide a definition of a guidance document. The reason for this is throughout the pandemic the government has often been using guidance documents instead of directives, but with similar language to a directive. The definition should be clear to ensure that the SDC captures the specific intent of these guidance documents.

I.	About ARCH 
ARCH Disability Law Centre is a specialty legal clinic, primarily funded by Legal Aid Ontario, that practices exclusively in disability rights law. ARCH is dedicated to advancing and defending the equality rights, entitlements, fundamental freedoms and inclusion of persons with disabilities in Ontario. In order to carry out its mandate, ARCH provides a range of legal services directly to persons with disabilities across Ontario, including:
a)	the provision of legal information and summary legal advice on a range of areas of law, directly to persons with disabilities across Ontario; 
b)	representation of persons with disabilities and disability rights organizations in precedent setting cases at all levels of courts and tribunals, including the Supreme Court of Canada; and  
c)	an extensive law reform practice, working on a variety of initiatives related to advancing the rights of persons with disabilities, and the provision of rights education to disability communities, and capacity building  in support of our communities.  
Germane to this feedback, ARCH provided fulsome submissions to standard development committees (SDC) in the development and review of all the accessibility standards pursuant to the Accessibility for Ontarians with Disabilities Act (AODA), and participated in the three Independent Reviews of the AODA.
More information about our work is available on our website: www.archdisabilitylaw.ca
II.	Introduction 
In order for persons with disabilities to participate fully in society, accessible health care is a fundamental necessity. Health care that is accessible provides better health outcomes, improved supports to maintain inclusion and participation in society and a sense of personal dignity and self-worth. 
In addition to drawing on the experiences of our clients and communities through our varied legal work, ARCH hosted three separate virtual discussion groups with persons with disabilities across Ontario that were focused specifically on the Initial Recommendations Report. We also solicited and received written feedback from ARCH’s membership. Our submissions are informed, and made more impactful, by the lived experience of members of disability communities. We thank each participant for their critical insight and contributions.
ARCH is continuously aware of ongoing and persistent barriers to health care for persons with disabilities. These obstacles are exacerbated for persons with multiple disabilities and intersecting identities, people with disabilities who live in rural, remote and northern communities, and Indigenous (First Nations, Métis and Inuit) Peoples. 
Given this background, ARCH is well positioned to provide comments on the Health Care SDC’s 2021 Initial Recommendations Report. ARCH wishes to thank the Health Care SDC for its commitment and work in developing its report, and we welcome this opportunity to offer feedback.
III.	Guiding Principles 
ARCH commends the Health Care SDC for acknowledging the role of the Convention on the Rights of Persons with Disabilities (CRPD) and weaving some international commitments into the Initial Recommendations Report. ARCH’s view is that the Government of Ontario must undertake compliance with Canada’s international obligations, and the rights espoused in the CRPD. Our position is that the government must acknowledge the interplay of the CRPD with each of the AODA accessibility standards.
Subsection (t) of the CRPD Preamble is also significant. It recognizes that: 
“… the majority of persons with disabilities live in conditions of poverty, and in this regard recognizing the critical need to address the negative impact of poverty on persons with disabilities.
This subsection is important because it identifies poverty as one of the primary principles of the social determinants of health.  Disability and low-income are intrinsically linked.  As the Supreme Court of Canada acknowledged in Eldrige v BC: 
Persons with disabilities have too often been excluded from the labour force, denied access to opportunities for social interaction and advancement, subjected to invidious stereotyping and relegated to institutions … One consequence of these attitudes is the persistent social and economic disadvantage faced by the disabled…
While it is true that not all persons with disabilities have low-income, there is a close connection between poverty and disability. ARCH suggests that the government of Ontario publicly commit to eradicating poverty. 
Article 3 of the CRPD describes the animating principles that inform the operation and application of the CRPD. The language of this Article specifically includes accessibility as a formal principle. 
The commitment to accessibility is bolstered by Article 9, which explicitly addresses the identification and removal of barriers. These include minimum standards and guidelines for accessibility in the built environment, transportation, information and communication, and other facilities and services, including health services offered to the public in both rural and urban areas.  
IV.	Community Input on Barriers to and Recommendations for Health Care 
Our discussion groups raised substantial problems about the geography and location of health services.  Most communities, unless they are in large, urban centres, do not have hospitals. Local transportation systems are patchy and infrequent. One person told us that it took her 5 hours return from home to hospital for a short pre-operative procedure. Relying on local transportation services requires significant maneuvering, time, and timing.  Some person with disabilities do not have access to cars, and taxis are too expensive. These barriers are particularly complex in rural, remote, northern and Indigenous communities.
Rehabilitation services were also noted to be absent in one’s own community. Many participants told us that they forgo rehabilitation or other related services if they aren’t located in their own community, because arranging for transportation is so difficult. If a service is not absolutely necessary, it becomes a “luxury” that many cannot afford if they have to rely on public transportation. The availability of health services in one’s own community is also the subject of Article 25(c) of the CRPD.
1.	Hospitals, diagnostic centres and/or rehabilitation services coordinate and make available accessible transportation services to and from local community transportation hubs to the health service provider.   
Article 25(a) of the CRPD expressly declares the right of persons with disabilities to the highest attainable standard and quality of accessible health care services. This Article recognizes the right of persons with disabilities to the same range of free or affordable health services available to others persons, including in the area of sexual and/or reproductive health.
During our focus group sessions, reproductive health was outlined as a concern for persons with genetically linked disabilities, such as intellectual or developmental disabilities, albinism, or cystic fibrosis was underscored. In particular, participants noted that women with genetically linked disabilities are still told by medical practitioners that they should not have children because they can “pass on” their disability. These disabilities are perceived to be “faults” that can be prevented, to the extent that some doctors continue to recommend sterilization.
2.	Sexual and reproductive health information must be provided to improve the delivery of advice, information, and services to persons with genetically linked disabilities. 
Additionally, attitudinal barriers towards genetically linked disabilities must be dispelled.  
During our focus groups, additional issues were raised that are not captured in the Initial Recommendations Report. We were told that American Sign Language (ASL) and other signed and spoken language interpretation are not easily or readily available in health settings. In one instance, a participant was told that language interpretation would not be available until the following week, notwithstanding emergency health matters. Moreover, communication is key to both providing, and consenting, to health services. 

ARCH recommends:
3.	The provision of any language interpretation service would benefit from clear direction and sufficient funding from the Ministry of Health, on the legal obligations to provide sign language interpretation to individuals who require it in receipt of all health care related services. 
We were also advised that prescriptions and pharmacies need to provide information in accessible ways, so persons with disabilities are aware of potential side-effects of medication, how often someone must take the medication, whether it should be taken with food and other information readily available to others. For persons who are blind or low-vision, script tools were cited as a resource for accessible information. Large print, braille and other options for providing accessible information must also be considered.
4.	Pharmacies must provide clear communication and alternate formats to ensure prescription labels and related information about medications are accessible to all persons with disabilities.
Participants also asked that the SDC consider alternative and preventative therapies, and the costs associated with their use. We were told that aquafit, physiotherapy, oral care and other therapies are not used as much as they could be, because of cost. If these services are not taken advantage of, there will be extra costs to the health care system. 
5.	The Ministry of Health investigate OHIP coverage for preventative therapies or those therapies that help to maintain optimal health for persons with disabilities. Persons with disabilities must be included in this investigation.
Discussion group participants emphatically told ARCH that hospitals are not the primary places persons with disabilities access health services. In fact, we were advised that hospitals are the last place that many persons would go. Hospitals are dangerous to persons with environmental or chemical sensitivities. We were told that cleaning products continue to be toxic, and scent-free policies are not enforced. As David Oley reported in the Third Independent Review of the AODA:
People with environmental sensitivities report seeing no benefit from the AODA. If they request that scents, fragrances or other products not be worn in workplaces or places where services are provided, the reaction is often disbelief. Some organizations may say they are striving to be scent-free, but that does not make it so at public events. Though warning signs about chemicals and fragrances are often posted in hospitals and other health care settings, they are rarely enforced.
We were told that some people receive most of their day to day health services from home and community (attendant) services. Others stated that their nurse practitioner and family doctor are better able to accommodate their disability due to the size of the clinic and their familiarity with the accommodation and accessibility needs of the person with a disability.  
Some participants advised us that they feel like “circus side shows” in hospitals.  While they may attend hospitals for knee surgery, they are paraded in front of hospital staff and students as a curiosity or “rare” example of a particular disability, especially if their disability is genetically linked.  People are defined by their disability.  One participant recounted that “walking through this world as a person with a genetically linked disability means that your medical issues becomes secondary.” Personhood is diminished. This is another reason that persons with some disabilities avoid hospitals whenever possible.
ARCH recommends that:
6.	All health services providers must use the least toxic cleaning products available. Everyone benefits from fewer pollutants in our air.
7.	All health service providers must receive training on the difference between scent-free and fragrance-free.
8.	All health services providers must have and enforce scent-free policies, and must develop air quality policies.
9.	These policies must be accompanied with public and professional education, to promote an understanding of their importance as preventative health measures that will benefit all.
10.	 Fragrance-free policies must be enforced.
11.	All health care providers must be trained in disability awareness and sensitivity, particularly for genetically linked disabilities.
V.	INITIAL RECOMMENDATIONS
The Preamble to the Initial Recommendations contains critical references, information and principles guiding the work of this SDC that deserve comment.  
We are concerned that this vital introductory commentary will be lost if it is not contained in recommendations. The Preamble is not a recommendation, and the rich contributions of the SDC members will not only go unacknowledged, but health care providers, and the health care system as a whole, will not have the benefit of their experience and expertise. This SDC is responsible for making recommendations that will deliver and improve accessibility to health care for persons with disabilities in Ontario. This SDC must transform the Preamble into clear and direct recommendations. 
The Initial Recommendations of the K-12 Education SDC and the Post-Secondary Education SDC detail recommendations from other Standards, so there can be no mistake that they interact and must be read harmoniously. The Health Care Standard must incorporate other AODA Standards by reference, as relevant. No Standard operates independently, accessibility is achieved when Standards are interpreted together to create an accessible Ontario in all areas that affect persons with disabilities.
ARCH also notes that some of the recommendations lack prescriptive language. Health service providers must know that they are required to adhere to and implement the Health Care Standard. 
ARCH understands that some service providers mistakenly believe that meeting the requirements of AODA Standards also means that they are meeting their obligations under the Ontario Human Rights Code. This is not the case. AODA Standards are the bare minimum requirements that obligated organizations must meet.
ARCH recommends that:
12.	The SDC review all information provided in the Preamble, or elsewhere, and wherever possible, propose recommendations that capture the information, intent and guidelines discussed.
13.	All recommendations must include measurable goals.
14.	Wherever possible, the Health Care SDC must incorporate all other applicable AODA Standards by specific reference so that there is no mistake that these Standards interact in a harmonious way to achieve accessibility in Ontario by 2025.
15.	Prescriptive language must be used throughout the Standard. 
16.	The Health Care Standard must advise health care providers and the public that meeting its requirements does not relieve health care providers of their obligations to accommodate to the point of undue hardship under Ontario’s Human Rights Code and pursuant to s. of the AODA.
The Scope of the Initial Recommendations for a Proposed Health Care Standard
This SDC’s mandate is to “provide recommendations to government on reducing and preventing accessibility barriers in health care, focusing on the hospital sector.” Based on this mandate, the present recommendations are limited to the hospital sector. The SDC has acknowledged the restricted scope of these proposed recommendations. To its credit, the SDC has attempted to include all health care settings in its Report where possible.  
Over the past two years, the Ministry of Health has stressed the importance of a modernized, fully integrated health care system. In this system, health service providers are part of an Ontario Health Team, so that health services will be provided in a cohesive manner. The decision to apply the standard only to hospitals is inconsistent with the government’s philosophy of an integrated health care system. 
ARCH strongly recommends that the Initial Recommendations apply to all health service providers and/or settings covered by the Connecting Care Act. These would include, but are not limited to: home and community services (attendant services); neighbourhood clinics; family practitioners; gynecology services; diagnostic centres;; dental offices; speech and language therapy; chiropractors; naturopaths; and long-term care settings.  
Some of our focus group participants acknowledged that it may be asking too much of small family practice clinics or some other health service providers to adopt all of these Initial Recommendations. In this instance, there was support for the immediate appointment of a new SDC to develop recommendations for a Health Care Standard that will cover all settings other than hospitals.
17.	These Initial Recommendations must apply to all health care settings.  
18.	 In the alternative, the SDC must review these Initial Recommendations and identify which ones apply only to the hospital sector, and which ones could apply more broadly, to all health care settings and/or providers.
19.	In the further alternative, this SDC must recommend that a new SDC be appointed immediately to develop an additional Health Care Standard that would apply to all health care settings other than hospitals.
Recommendations
1.	Accessibility planning and engagement with persons with disabilities 
ARCH supports the SDC’s recommendation to ensure that persons with disabilities will be consulted in matters related to health service planning, quality improvement and capital expense planning. ARCH proposes that the SDC recommend that consultations with communities of persons with disabilities are meaningful and genuine. Many persons with disabilities are concerned that health providers will merely consult in order to comply with the Standard, and that lived experience will be ignored in accessibility planning. Health service providers must build relationships with disability communities that are reflective of their unique and diverse local makeup. In addition, health service providers must be alive to pan-disability perspectives and intersectional identities. These practices could counter feelings of “consultation fatigue”, where the same people are frequently invited to participate in discussions that will benefit from their input. Organizations comprised of persons with disabilities have a better chance of connecting with members who may want to be consulted on specific issues. However, this should not take the place of the health service providers seeking out individual members of disability committees, or asking for participants through local channels. In addition, health providers must publish a public annual report that describes all consultation issues, mechanisms and results to ensure health providers are accountable to their communities.
ARCH recommends that:
20.	Health service providers shall consult whenever new and emerging issues arise. At the very least, health providers must consult annually with persons with disabilities or the organizations led by them, to receive input from them  in matters related to health service planning, quality improvement and capital expense planning.
21.	Health service providers will meaningfully consult with persons with disabilities and organizations comprised of persons with disabilities. Their contributions will be reflected and included in any and all health services communications.
22.	To demonstrate a commitment to disability engagement, and as an additional accountability measure, health providers must publish an annual report, including: accessibility issues consulted on; the composition of consultation groups; a summary of the discussions and opinions offered; recommendations and the information used to support them; and a timeline for implementation.  
Persons with disabilities also noted that their expertise is most often volunteer and uncompensated. While other experts/consultants are highly paid for their opinions and knowledge, that same experience is taken for granted in consultations with persons with disabilities. The result is that persons are made to feel “grateful” that they have been included in consultations. In addition, consultation participants often incur expenses that could include transportation, meals, or childcare.  
ARCH therefore recommends:
23.	Consultation participants must receive an acknowledgement of their contributions by way of financial remuneration or a daily stipend.  
24.	All expenses incurred by persons with disabilities will be reimbursed.
2.	Consultation on procurement or facilities
ARCH supports the involvement of persons with disabilities in the procurement of accessible equipment, service contracts and renovations of spaces so that they are in line with the principles of universal design. ARCH recommends that specific mention of the principles of universal design form part of this recommendation. 
ARCH recommends:
25.	Health care providers must create a policy requiring that all new facilities, or renovations, incorporate principles of universal design.  	
3.	Access to equipment
During ARCH’s discussion groups, accessible diagnostic equipment was cited as an important barrier to health services. ARCH was told that many pieces of equipment lack grab bars and/or adjustable tables or even adequate space for wheelchairs or scooters to comfortably manoeuver. 
For women with disabilities, gynecological services, from pap smears to mammograms, are particularly inaccessible. The lack of accessible equipment is accompanied by attitudinal barriers. We were told that many tests are avoided because health providers are uncomfortable asking the person with a disability what process or procedure would work for them. One anecdote described a doctor only taking nasal swabs and omitting anal swabs, when both are usually required, simply because they felt uncomfortable asking how the person wanted this test done. This example is a strong indicator that less than equal care is being provided to persons with disabilities because of inaccessible diagnostic equipment and attitudinal barriers.
The former Anne Johnston Health Centre (now Vibrant) was frequently cited as the best example of an accessible and welcoming environment for persons with disabilities. All equipment was accessible, all staff provided an inclusive and welcoming environment, and health professionals asked questions if they were not familiar with a patient’s accommodation needs. There need to be more health clinics and health service providers who imbue their services with a culture of accessibility and inclusion.
We were also advised that many washrooms do not include grab bars, so persons with disabilities must rely on family members or staff for assistance. We were told that signage is problematic. It is not posted at a height accessible to many, the lettering is in small print and the signs are generally only in English.
ARCH recommends that:
26.	Research and development of accessible equipment for health service providers be continued.
27.	When equipment needs to be replaced or changed, the most up to date and accessible equipment be procured.
28.	Health service providers must receive up to date training, on an annual basis, about creating inclusive spaces to remove attitudinal barriers and ensure equal delivery of health services.
29.	Existing facilities must be updated to ensure there are fully accessible washroom on every floor.
30.	Signage must be accessible to all persons with disabilities, and be in clear and accessible language and in alternate formats.
4.	Accommodations funding for hospitals
ARCH agrees that the Ministry of Health must create a dedicated line of funding for health providers to purchase accessible assistive devices, supportive equipment and accommodation of support services.  
We ask this SDC to ensure that persons with disabilities themselves are not responsible for paying the costs of accommodations while in a health care setting. Health care providers are service providers and they have an obligation to provide accommodations to the point of undue hardship.
ARCH recommends:
31.	All accommodations provided to persons with disabilities while in a health care setting will be free of charge.	
In keeping with the CRPD Article 4 (h) ARCH recommends that health care providers be obliged to provide accessible information to persons with disabilities about mobility aids, assistive devices and assistive technologies, including new technologies and other forms of assistance, support services, and facilities. In addition, ARCH suggests that the SDC include recommendations requiring that the government of Ontario, Ministry of Health, and all health providers, support and implement CRPD Articles 4 (f), (g), and (h), which address research and development in the provision of various accessible devices and services.
 ARCH therefore recommends:
32.	Health care providers must provide accessible information to persons with disabilities about mobility aids, devices and assistive technologies, including new technologies as well as other forms of assistance, support services and facilities.
33.	The government of Ontario fund, and the Ministry of Health and health services providers, uundertake and/or promote research and development of universally designed goods, services, equipment and facilities, as defined in article 2 of the CRPD, which shall require the minimum possible adaptation and the least cost to meet the specific needs of a person with disabilities, to promote their availability and use, and to promote universal design in the development of standards and guidelines;
34.	The Government of Ontario fund health providers to undertake or promote research and development of, and promote the availability and use of, new technologies, including information and communications technologies, mobility aids, devices and assistive technologies, suitable for persons with disabilities, giving priority to technologies at an affordable cost;
5.	Coordination of accessibility accommodations
ARCH commends the SDC for this recommendation. We heard from many focus group participants that they frequently have to detail necessary accommodations when receiving health services in different settings. A health system that ensures proactive identification, and that ensures that accommodations are stated in a care plan will alleviate the frequent disclosure of accommodations.  
However, for this recommendation to be truly effective, the coordination of accommodations must be across all health service providers and not just hospitals. This is a clear example of a recommendation that is significantly more effective if the standard applies to all health service providers as it will allow persons who are receiving care to transition across health sectors while having their accommodation needs proactively identified and implemented in a timely manner.		

ARCH recommends:
35.	The coordination of accommodations not be limited to hospitals,  and must apply to all health service providers. 
36.	Care plans must identify appropriate accommodations so that these accommodations will be provided in a new health setting without delay.
6.	Electronic health records
Our participants had mixed responses about the use of electronic health records.  A major concern is who will be able to access these records – will they be available on a need to know basis, or will they be available to any health care staff who might want to “take a nosey” look. One person noted that “Medical practitioners have so much access and we (persons with disabilities) have so little privacy”.
Participants were also concerned about inaccurate or prejudicial information being on their electronic records. For example, if someone arrives at a health setting in crisis, they may be described as a “difficult” patient. If this information follows them, then other health providers may be influenced by this description, thereby creating attitudinal barriers that could impact on treatment or services from the initial intake to appointments with health professionals. Many participants wanted to know whether information on an electronic health record could be changed or altered in these instances. Others asked who the record belongs to – is it the health provider’s record, or does the person with a disability “own it”, since it about them and contains their medical information. Several participants expressed an interest in having access to and using information on their electronic medical records at no cost to themselves. ARCH was told that specific consent must be required for sharing any health records, and that consent must be provided after the person with a disability has had an opportunity to review the information to be shared.
ARCH was also told that some practitioners use platforms for posting medical records that are inaccessible to them or their screen readers. They advocated for the inclusion of standards under the Information and Communication Standard to ensure accessibility.
Many participants supported the use of electronic health records if they are intended to inform other providers about accommodation needs, and to avoid having to start at the beginning each time they see a new service provider (see Recommendation 5).
Finally, health service providers must be alive to the disproportionate impact of using electronic records in all instances. There must be provision for paper medical records for persons who do not or cannot use technology, regardless of the reasons. These records must be provided in alternate formats upon request.
ARCH recommends:
37.	This SDC must revise this recommendation and ensure that it addresses: who will have access to electronic health records; how inaccurate information can be amended; who the health record belongs to; and whether the person with a disability can share the information on their electronic health records with others.
38.	The Information and Communication Standard be explicitly incorporated by reference into this recommendation.
39.	Health records are to specifically include accommodations plans and those plans will be available to share with other health service providers.
40.	Persons may continue to have access to paper records upon request, in inaccessible formats and at no cost to them.
The SDC advises that the intent of this recommendation is to better allow patients to participate in their health care decisions. Perhaps this intent would be better reflected as a recommendation under Recommendation 8: Communication accommodation and respect for capacity, or Recommendation 10: Communication accommodation and informed consent. The SDC’s intent does not accurately reflect the “accommodations” approach of the electronic records recommendation.
7.	Support for accommodations and patient-centred care
ARCH supports this recommendation, which is to advance an organizational culture of accommodation, based on the principles of independent living and shared accountability. However, the recommendation lacks specificity, and fails to incorporate independent living principles, which include living with dignity in a chosen community, controlling and making decisions, and participating in all aspects of life.
ARCH recommends:
41.	All health providers adopt and implement the principles and philosophy of independent living within their organization.
42.	Any and all accommodations are made available and in place to ensure that the person with a disability is respected as an essential decision-maker in all aspects of their care.
43.	 Health service providers must collect and report to the MOH that persons with disabilities have been involved in the creation of their plan of care.	
The recommendation specifies education as a method to ensure a patient-centred approach. However, it fails to outline how this education will be delivered, and who will be delivering it. ARCH is concerned that education alone will not be enough to ensure that persons with disabilities are at the centre of their own care. There are guidelines available from a number of organizations, which provide significant details on how to implement a person-centred care model, such as RNAO’s “Person-and Family-Centred Care” Best Practice Guideline, and Cancer Care Ontario’s “Person-Centred Care Guideline.
ARCH recommends:
44.	 All health service providers must create policies to ensure persons with disabilities are at the centre of their own care.  This recommendation could also be part of the Hospital Declaration of Values, Recommendation 15.
45.	Persons with disabilities must be consulted and participate in the delivery education to health service providers and staff.
46.	In addition to education, health service providers must create a policy which specifically details what staff must do to comply with the person-centred care model, when providing service to persons with disabilities.
8.	Communication accommodation and respect for capacity
As a first principle, every person in Ontario is presumed to be capable, and all health care providers must understand and accept that this is the starting point for interactions with any patient. In addition, ARCH encourages stronger language, to the effect that all supports and services to enhance decision-making capacity will be offered and be made available. 
Communities of persons with disabilities are diverse and varied. In some instances, accommodations to enhance decision making may be sufficient. In others, additional supports may be required for persons to exercise their legal capacity. Supported decision-making is another way for persons with disabilities to exercise their legal independence.
ARCH encourages this SDC to recommend that the government of Ontario explore additional ways to enhance decision-making for persons with disabilities, including supported decision-making.
In all communications between a person with a disability and their health service provider, it is important to use respectful and appropriate disability related language, and to communicate directly with the person with a disability. We continue to be made aware of many instances where health providers speak with a person accompanying the person with a disability. This is often the case for persons with intellectual disabilities, persons with hearing and communication disabilities, Deaf persons, or persons with mental health disabilities.  
Related to this, is the reliance on Powers of Attorney (POA), which permit someone to make decisions for a person with a disability, despite their capacity. Powers of Attorney must be scrutinized to ensure their proper use in all circumstances.
ARCH recommends:
47.	Every health care provider must have policies to ensure appropriate and effective safeguards are in place to prevent abuses of decision-making capacity by third parties.
48.	Measures relating to safeguards must ensure that the rights, will and preferences of the person with a disability are free from conflict of interest and that the preferences of the person are free from undue influence.
49.	Powers of Attorneys must be subject to scrutiny to ensure they are properly used in circumstances prescribed by the person with a disability.
50.	The Government of Ontario explore and implement additional means by which persons with disabilities can exercise their legal capacity, including supported decision-making.
9.	Access to third party supports
ARCH commends the SDC for this detailed recommendation. However, ARCH is concerned that discharge planning, and the importance of necessary supports when someone is back at home and in the community, is not part of this recommendation. It is often difficult to know what services are available in the community, how to navigate complicated service and funding regimes, and how to engage appropriate supports.    
ARCH recommends:
51.	When a person with a disability is admitted to a health care setting for more than one overnight, a support team will ensure that any community supports or services the person had before admission will continue uninterrupted after their discharge from hospital.
52.	Before engaging “non-medical” support services of any kind, the person with a disability must consent to the supports being offered and who will be providing the supports.
53.	Discharge planners will investigate the community support options available to a person with a disability upon release from hospital.
54.	Discharge planner will help the person with a disability fill out any forms required for support services.
55.	Discharge planners will discuss funding sources and costs of support services with the person with a disability.
10.	Effective communication and informed consent
ARCH commends the SDC on this recommendation.  We do not have additional recommendations.
11.	Development of education and training in hospitals and colleges
ARCH supports this recommendation, and in particular, the SDC’s decision to have all education materials developed in partnership with persons with disabilities. ARCH recommends that this SDC confirm that this recommendation apply across all health care providers and in all settings. One clear example is Personal Support Workers, who are not a regulated health professional under the Regulated Health Professional Act.
ARCH Recommends:
56.	Education modules must take in to consideration all persons who provide health services to persons with disabilities, and not just those who work in hospitals.
12.	Implementation of education and training in hospitals
ARCH agrees with the SDC’s recommendation regarding when education and training will occur in the hospital sector. However, similar to above, ARCH is concerned that by limiting education to hospital staff, the SDC is restricting the effectiveness of this recommendation. 
ARCH recommends:
57.	The SDC specify how this training can be provided to all other health service providers, including persons who provide services at clinics, long-term care, and home and community care.
13.	Training resources and core competencies  
ARCH supports the SDC’s long and expansive list of education modules. However, ARCH recommends that specific modules be created on the Ontario Human Rights Code and the Charter of Rights and Freedoms. 
ARCH Recommends:
58.	The creation of these modules be developed and delivered in partnership with persons with disabilities.
59.	Thorough consultation be done to ensure that all relevant topics are included in training resources and core competencies. 
60.	Modules on the Ontario Human Rights Code and the Charter of Rights and Freedoms should be added to the list. 
14.	Training for regulated health care professionals
ARCH supports this recommendation, and has no suggested changes. 
15.	Hospital Declaration of Values 
ARCH agrees that health service providers must have a Declaration of Values, separate from a Patient’s Bill of Rights. A Patient Bill of Rights pursuant to the Excellent Care for All Act sets out patient expectations. However, health providers must also adopt foundational documents that set out how they will commit to accessible and inclusive service delivery. ARCH recommends that this Declaration be more comprehensive than a mere commitment to accessibility and making complaints without fear of reprisal. If this SDC is recommending that there be a health services Declaration of Values, it must be a meaningful one.
In Initial Recommendation 7, this SDC discusses a “culture of accommodations”.  In the Third Independent Review of the AODA, David Onley wrote:
“…achieving accessibility will take more than laws and regulations – it will take a massive cultural transformation – a societal change to make accessibility foremost in mind rather than an afterthought.  We should focus on the spirit of what we are trying to do… The goal is full participation and processes are a minor subset of that.”
A consequential health providers’ Declaration of Values must stipulate that a culture of full inclusion be infused into the delivery of health services to persons with disabilities, with respect for dignity, autonomy, independence and full participation in community/social life. A culture of full inclusion must be fostered throughout the education and training of health service providers and staff.  
Leadership can set the tone for the health sector. Guiding by example, hospital CEOs and the Boards of Directors, or administrators of other health settings, must spearhead a motivating commitment to inclusion and accessibility in the delivery of critical health services. Concrete measures embracing the spirit of accessibility must be part of a health providers Declaration of Values.
In addition, the Standards under the AODA are intertwined and work together to ensure broad accessibility throughout Ontario. This is bolstered by the animating principle of accessibility in Article 3 of the CRPD and by Article 9 which features accessibility. Canada’s international commitments will be furthered by strong language obligating the health sector to instill a culture of accessibility in all practices, procedures and policies.
ARCH also refers to CPRD Article 25(d) which requires an awareness of human rights through training and the promulgation of ethical standards.  
Finally, the CRPD provides guidance on other issues that can be included in a health providers Declaration of Values. The list below is in no way an exhaustive one. We urge this SDC to recommend additional values to be included.
ARCH recommends:
61.	Persons in leadership roles will model a commitment to accessibility and inclusivity in all health settings.
62.	Health providers will adopt a Declaration of Values that provides for care of the same quality on the basis of free and informed consent, raising awareness of the human rights, dignity, autonomy, and needs of persons with disabilities through training and the promulgation of ethical standards for private and public health care.
63.	Health service providers must acknowledge their adherence to all AODA Standards to the extent that they apply.
64.	Health service providers must commit to protecting integrity of the person with a disability.
65.	A health service’s Declaration of Values must incorporate a Patient Bill of Rights.
16.	Accessible Patient Relations Process
ARCH supports this recommendation, about accessible patient relations processes. However, this recommendation should go further and require health service providers to create plain-language guides, fact sheets or toolkits about their complaints process, including: how to access patient relations; how to prepare for a call with a patient relations representative; and additional resources available to patients, such as where to get legal information or assistance. 
During our focus groups, participants noted that persons are not aware that they can make complaints to bodies who regulate the conduct of health providers, such as the College of Physicians and Surgeons or the College of Nurses.  We were also advised that the Royal College of Dental Surgeons of Ontario have particularly useful guides to their complaints process, which could be used as a template for other regulatory bodies.
66.	Hospitals must create plain language guides, fact sheets or toolkits that describe: how to access patient relations; how to prepare for a call with patient relations; and the process for making a complaint, as well as any appeal processes. These documents will provide templates for letters and other communications. They will also offer resources for support throughout the complaints process.
67.	This information will be provided in alternate formats and in languages other than English. 
68.	Regulatory bodies governing health professionals must also provide information about how to make a complaint in case persons with disabilities against a regulated health professional including the same information as above.
17.	Accessible complaints process
The main problem with this current recommendation is that it does not provide specific timelines. ARCH supports the creation of fast track approach for urgent or emergency complaints. For example, in emergency situations, hospital staff must address the complaint within 24 hours. If complaint is not deemed an emergency, then it should be addressed within one week. Without timelines, this new creation of a fast-track complaints process will be ineffective. ARCH also endorses the 7th point under this recommendation, which requires hospitals to provide information to patients on how to access the complaints and patient relations processes at a patient’s first encounter with the hospital. 
69.	The SDC specify timelines for response to complaints, both for emergency complaints and non-emergency complaints. Without timelines health service providers won’t be held accountable for failing to respond to a complaint in a timely fashion. 
70.	On first contact with the health service provider a person with a disability will be advised on the complaint processes available to them.
18.	Accreditation
ARCH commends the SDC’s recommendation for accreditation of health service providers, and the thought process behind it.  ARCH also applauds the recommended use of AODA Compliance Tool Kits and a centralized repository of best practices.
19.	Compliance enforcement
The SDC should be commended on this thorough and comprehensive recommendation.  Compliance and enforcement measures have been the subject of all three independent reviews of the AODA.  The public is not convinced that the government takes accessibility for persons with disabilities seriously. This represents a failure of the AODA and its Standards.  
David Onley, in the Third Independent Review, made significant findings and recommendations about how to improve compliance and enforcement measures.  Discussion group participants stated that financial penalties should be implemented to ensure compliance and enforcement of Standards. The point was made that penalties should be applied “where they will make a huge difference”. In other words, the penalties can’t simply come from hospital or other budgets that the government funds.  It would amount to the government paying its own penalties.  
ARCH recommends:
71.	 Financial penalties shall be enforced for non-compliance with the Health Care Standard.
20.	Enforcement strategy and framework – hospital (health care provider) accessibility standards   
The SDC has also been thorough in proposing an additional enforcement framework for health service providers.  In particular, the three year time frame for this recommendation will mean enforcement measures will take place before 2025, which is a laudable goal.
ARCH recommends that:
72.	 All health service providers be covered under this recommendation.
21.	Outreach
The recommended outreach strategy is wide-ranging.  ARCH recommends that the government follow this strategy for implementation and monitoring of all of AODA Standards and the AODA itself.  If the government undertakes to raise awareness of the importance of accessibility and inclusivity throughout Ontario, this would be an important message for persons with disabilities.
22.	Accessibility and disability during a pandemic or emergency situations
ARCH commends the SDC for including recommendations arising from the COVID-19 pandemic and an attempt to ensure that the health system is prepared for future pandemics and emergencies. ARCH also understands that these topics are ever changing and difficult to explain. However, ARCH is concerned that these recommendations lack specificity as well as an attempt to tackle complicated and broad issues without providing any background on the topics. 
ARCH recommends:
73.	The preamble of this recommendation outlines that Recommendation 22 should apply to health care providers and should not be limited to hospitals. The recommendations themselves do not state this clearly enough. The recommendations must mirror the preamble, and apply to all health service providers.
74.	The second recommendation refers to data collection and reporting on the impact that the pandemic had on persons with disabilities. ARCH recommends that a data collection and review process be designed in partnership with the groups listed from A-E. These groups are experts and they will know which questions to ask, and which areas need to be focused on.
75.	With respect to recommendation 3, ARCH wants to make clear that these guidance documents do not replace any by-laws and regulations. Rather, they are to be used to provide information about any mandatory mask laws or directives. 
76.	For the 4th recommendation, the guidance documents should be created for each facet of health service provision and not just be provided to pharmacies and health care product vendors. 
77.	Recommendation 5 should outline that the broad review of emergency management policies should be done through the lens of universal design.
78.	Recommendation 6 should be expanded to not only include testing centres, but also require that vaccination centres should be fully accessible. In addition to making these sites accessible to persons with disabilities, the guidance document(s) should also touch on giving access to those groups mentioned in recommendation 2 and in doing so be in line with the social determinants of health.
79.	The 7th recommendation should specify that in addition to working with hospitals and public sector partners, the Ministry must also work directly with persons with disabilities to determine how to effectively apply a disability lens in emergency situations.
80.	Recommendation 7 would benefit from being divided into separate recommendations. Each issue raised in recommendation 7 is significantly important, and this will be lost in the drafting of the standard.  For example, the recommendation under 22 - 7(a) touches on the triage protocol, however it provides no context or information on this topic. Another example is recommendation 22 - 7(h) on visitation bans. ARCH heard from a number of members of our community that they were unable to have their support person with them as a result of these policies. Although ARCH appreciates that it is mentioned, and agrees with the recommendation, it seems odd that it is mentioned in the same recommendation as the triage protocol and home and community services. In addition by lumping these issues in to one subset of a recommendation, the importance of the issues is minimized.
81.	Throughout the entire recommendation, the SDC often uses the term guidance documents. ARCH asks the SDC to provide a definition of a guidance document. The reason for this is throughout the pandemic the government has often been using guidance documents instead of directives, but with similar language to a directive. The definition should be clear to ensure that the SDC captures the specific intent of these guidance documents.
Conclusion
We hope that these submissions are useful to the Health Care Standards Development Committee. If ARCH can be of any further assistance, please do not hesitate to contact us.