Comments from Richard Besser, MD, on Proposed Update to Federal Regulations Prohibiting Disability Discrimination

The following comments were submitted by President and CEO Richard Besser, MD, of the Robert Wood Johnson Foundation (hereinafter "RWJF" or "the Foundation"), in response to the U.S. Department of Health and Human Services (HHS) proposed rule, “Discrimination on the Basis of Disability in Health and Human Services Programs or Activities” (hereinafter “2023 Proposed Rule”).

RWJF is committed to improving health and health equity for all in the United States. In partnership with others, we are working to develop a Culture of Health rooted in equity that provides every individual with a fair and just opportunity to thrive, no matter who they are, where they live, or how much money they have.

Health is more than an absence of disease. It is a state of physical, mental, and emotional wellbeing. It reflects what takes place in our communities, where we live and work, where our children learn and play, and where we gather to worship. That is why RWJF focuses on identifying, illuminating, and addressing the barriers to health caused by structural racism and other forms of discrimination, including sexism, ableism, and prejudice based on sexual orientation.

We lean on evidence to advance health equity. We cultivate leaders who work individually and collectively across sectors to address health equity. We promote policies, practices, and systems change to dismantle the structural barriers to wellbeing created by racism. And we work to amplify voices to shift national conversations and attitudes about health and health equity.

RWJF is pleased to offer the following comments in response to the 2023 Proposed Rule. Our comments are grounded in the perspectives and learnings of our grantees, who include academic researchers, policy experts, advocates, and organizers with deep expertise in disability inclusion and justice as well as experience in addressing multiple and intersectional forms of discrimination in healthcare delivery. Our comments are also based on findings from research RWJF has funded and from our work to ensure that everyone has a fair and just opportunity to be as healthy as possible.

Finally, our comments are informed by RWJF’s participation in the Disability & Philanthropy Forum and my role as co-chair of the Presidents’ Council. The Disability & Philanthropy Forum mobilizes philanthropy to dismantle ableism by increasing funding for disability inclusion, rights, and justice by amplifying the leadership of disabled people in the philanthropic sector, and by educating philanthropy to build a culture of inclusion. The Forum was created in response to calls to action by the disability community to address gaps in disability representation in, and funding from, philanthropy. In 2019, the Ford Foundation and RWJF convened a group of foundation presidents who in turn established the Forum. The Forum now includes the Presidents’ Council (a peer community of foundation presidents), nearly 900 individual members, and 76 signatories of the Disability Inclusion pledge.

Comments on the Proposed Rule

RWJF strongly supports HHS’ efforts to modernize its implementing regulations for Section 504 of the Rehabilitation Act of 1973 to strengthen prohibitions against discrimination on the basis of disability in healthcare and human services programs. An update to the regulations is long overdue; the 2023 Proposed Rule would be the first update since the regulations were originally promulgated in 1977. Notably, it was no small feat to secure the signing of those original implementing regulations; it took protests and demonstrations led by the disability community, including a 26-day sit-in at a federal building in San Francisco, to overcome the opposing pressure of hospitals, universities, and state and county governments. The improvements to the regulation as outlined in the 2023 Proposed Rule are a testament to the continued advocacy by the disability community over the fifty years since the passage of the Rehabilitation Act of 1973.

We support the clarifications to existing requirements prohibiting discrimination on the basis of disability in programs and activities funded by HHS, including in healthcare, child welfare, and other human services. We also support proposed updates to the definition of disability and other provisions to ensure consistency with statutory amendments to the Rehabilitation Act of 1973, enactment of the Americans with Disabilities Act and the Americans with Disabilities Amendments Act of 2008, and the Affordable Care Act (ACA) as well as Supreme Court and other significant court cases. 

RWJF also supports the Department’s efforts to finalize regulations related to the ACA’s nondiscrimination provision, Section 1557. (See RWJF’s comment on the Section 1557 proposed rule). We support complementary changes in the 2023 Proposed Rule because the proposed Section 504 rule includes important topics excluded from the proposed Section 1557 rule, including the adoption of clear, objective standards to determine accessibility both of medical diagnostic equipment and of webpages and mobile apps. 

A recent report released by the Urban Institute and funded by RWJF found significant and ongoing problems when people with disabilities seek healthcare, underscoring the need for updated and stronger regulations. For example:

• In 2022, 4 in 10 adults with disabilities reported that they experienced unfair treatment in healthcare settings, at work, or when applying for public benefits because of their disabilities or other personal characteristics in the previous year. 
• Among disabled adults, Black and Hispanic/Latinx adults were more likely than White adults to report unfair treatment or judgment in each of the three settings listed above because of their race, ethnicity, country of origin, or primary language. 
• There are substantial adverse consequences of this unfair treatment. Of adults with disabilities that reported unfair treatment, 71% reported a subsequent disruption in care, including 54% who delayed care and 50% who reported forgoing care. 

RWJF’s comments on specific provisions in the 2023 Proposed Rule are as follows. Italicized and indented text indicates areas where RWJF believes that HHS could further strengthen the 2023 Proposed Rule’s provisions addressing discrimination on the basis of disability.

Medical Treatment Decisions

RWJF supports the clarifications in the 2023 Proposed Rule that strengthen protections for people with disabilities with regard to medical treatment. Given the impact of the pandemic on people with disabilities, and the pervasive examples of discriminatory treatment decisions, denial of access to care, and decisionmaking criteria that devalued the lives of people with disabilities, these new provisions are essential protections against discrimination. RWJF also supports the language that prohibits disability-based discrimination in the informed consent process, including the provision of medical advice and the process for providing information on available treatment options. These new regulatory requirements address the key forms of discrimination that were long-standing before the pandemic and that were elevated during the pandemic.

RWJF recommends that the provisions in the 2023 Proposed Rule regarding the importance of obtaining individuals’ informed consent to treatment could be improved by emphasizing recipients’ obligations to provide reasonable modifications needed to ensure effective communication and informed choice. As the pandemic demonstrated, this may include modification of hospital visitor policies to allow for a designated support person to facilitate effective communication, offer behavioral support, and assist with access to care. Including the example of designated support persons in the regulation’s preamble would further underscore the legal obligation of recipients to make reasonable modifications, both individually and program-wide, and to ensure effective communication and informed choice for individuals with disabilities seeking medical treatment.

RWJF recommends that the preamble should note that cultural responsiveness should be embedded in both the treatment decisionmaking process as well as access to all necessary treatment options. For people with disabilities, including those from communities of color, accommodating cultural differences and language requirements is necessary in all aspects of medical treatment. 

Value-Based Assessments

RWJF appreciates and supports the inclusion in the 2023 Proposed Rule of a provision addressing the discretionary use of value-based assessments. The 2023 Proposed Rule prohibits the use of discriminatory assessment methods that devalue disabled individuals’ lives when evaluating the cost-effectiveness of medical treatments and when such methods are used to deny, or afford unequal opportunity to, access to aids, benefits, or services. Structural barriers to health and wellbeing have already led to high rates of chronic medical and mental health conditions for people of color, and they are at particular risk of experiencing discriminatory treatment decisions if they have a disability. The proposed regulations are an important step in lifting the structural barriers caused by recipients’ reliance on assessment tools which prevent equal access to care for people with disabilities.

RWJF agrees with the preamble’s analysis highlighting the significant problems with the Quality-Adjusted Life Year (QALY) value assessment tool. QALY relies on the discriminatory premise that using a treatment to extend the lives of people with disabilities and other chronic conditions is inherently less valuable than using that treatment to extend the lives of people without such conditions. For this reason, and as noted in the 2023 Proposed Rule’s preamble, it has been broadly criticized by disability advocates.

By prohibiting the discriminatory use of QALYs for treatment decisions on a broader scale, the 2023 Proposed Rule could accelerate the development of alternatives, including more thoughtful, balanced, multi-method approaches to comparative value assessments that center the perspectives of marginalized subgroups like people with disabilities, inform transparent resource allocation, and, above all, do not discriminate against people with disabilities or other marginalized groups.

RWJF recommends that the 2023 Proposed Rule include a prohibition on the discriminatory use of assessment tools that devalue either the extension of life years for people with disabilities or the quality of life, including provision of treatment that alleviates suffering for people with disabilities and other chronic medical conditions. We urge the Department to consider the following amendment (bolded and underlined) to the proposed Section 84.57:

Value assessment methods. A recipient shall not, directly or through contractual, licensing, or other arrangements, use any measure, assessment, or tool that discounts the value of life extension or quality of life on the basis of disability to deny or afford an unequal opportunity to qualified individuals with disabilities with respect to the eligibility or referral for, or provision or withdrawal of any aid, benefit, or service, including the terms or conditions under which they are made available.

Child Welfare/Foster Care

We support the 2023 Proposed Rule’s recognition that disability does not preclude an individual from parenting. Discrimination has no place in systems designed to protect children and strengthen families, yet stereotypes and presumptions about the capability of parents with disabilities have been used to remove children and bypass reunification efforts. Further, intelligence measures (e.g., IQ scores) alone must not be used to determine parental fitness. Everyone involved in the child welfare system—parents, children, foster parents, and prospective parents—must be able to access critical child welfare services free from discrimination.

We additionally support the Department’s discussion of the requirement to place children with disabilities in the foster care system in the most integrated setting appropriate for the child. Children belong with families, and when they cannot be with their family of origin, they should be in the most family-like setting possible. Yet for far too many children with disabilities, congregate care has been the default for many years. We wholeheartedly appreciate the Department’s recognition that “[c]ongregate care should never be considered the most appropriate long-term placement for children, regardless of their level of disability.”

RWJF recommends that HHS address in the preamble and commentary to the regulation how race and poverty interact with disability discrimination in the context of the child welfare system. This is of particular importance given the overrepresentation of Black, Hispanic, and Indigenous children and youth in the child welfare system compared to their proportion of the general population, which is due in part to structural challenges faced by many families from these communities, including racial bias and other forms of discrimination.

Integration

We support the 2023 Proposed Rule’s reinforcement of the Supreme Court’s decision in L.C. v. Olmstead. People should not be forced to live in an institution if they can live in the community they choose with supportive services. We also appreciate that HHS is codifying longstanding case law and U.S Department of Justice guidance that Olmstead protects individuals at serious risk of institutionalization and, therefore, an individual need not wait until they are institutionalized or otherwise segregated to assert their right to be free from unnecessary segregation. 

Medical Diagnostic Equipment

RWJF strongly supports HHS’s efforts to apply specific requirements for accessible medical equipment. Inaccessible medical diagnostic equipment (MDE) effectively excludes certain people with disabilities from accessing routine examinations and specialized medical care. Due to inaccessible equipment, people with disabilities may be excluded from certain types of exams or treatment, may be delayed in receiving medical treatment because of an inability to access medical care, or receive subpar medical examinations. 

These issues, and more, can result in undetected medical conditions, exacerbation of known disabilities, and the development of secondary conditions for people with mobility disabilities. For example, studies have found for more than two decades that women with disabilities are less likely than nondisabled women to receive high value screening services, including mammography and Pap tests. A 2021 study found that, compared to women without disabilities, women with pre-existing movement difficulties or complex activity limitations had significantly higher rates of breast cancer and cervical cancer, which underscores the need for equitable access to high value screeing services for this population. 

RWJF supports adoption of the standards issued by the U.S. Access Board and ensuring that all MDE is accessible. However, RWJF is concerned that the 2023 Proposed Rule seems to adopt a standard that only some of an entity’s facilities must be accessible by reassigning services to other accessible sites. While the preamble notes that reassignment to another facility does not provide equal opportunity if it creates a burden on an individual with a disability due to higher costs or significantly less convenience, the 2023 Proposed Rule itself does not recognize the burden of having to travel farther, wait longer, or otherwise face unequal treatment. 

RWJF recommends that HHS clarify in the 2023 Proposed Rule—not solely in the preamble—that reassignment to another facility does not provide equal opportunity if it creates a burden on a person with a disability due to higher costs or significantly less convenience. 

RWJF encourages HHS to consider, in future rulemaking, the adoption of MDE standards pertaining to people with sensory disabilities as well as expanding the scope of the standards to encompass equipment used in medical treatment and not only in diagnosis.   

Web, Mobile and Kiosk Accessibility

RWJF supports the 2023 Proposed Rule’s recognition that websites, mobile applications, and kiosks must be accessible. As technology becomes increasingly prevalent in all aspects of daily life, it is essential that people with disabilities have equitable access to the diversity of ways that people use the internet to access public services, programs, activities, and information. For too long, people with disabilities have been denied effective access to the benefits of health and human service systems’ digital infrastructure. For example, many telehealth platforms are not equipped to include sign language interpreters despite the availability of third-party video interpreting.

RWJF supports the adoption of a clear, ascertainable standard for web accessibility, such as the W3C Web Content Accessibility Guidelines (WCAG). The WCAG are international standards informed by experts in digital accessibility. The multiyear consultations for each new standard ensure that the standards are achievable, effective, and clear, and regular updates ensure that they meet the current state of technology. WCAG 2.2, Level AA is the most recent standard published on October 5, 2023. 

Considering that the new standard significantly precedes publication of the final rule, and that HHS intends to provide a period of time for recipients to become familiar with the rule, we urge HHS to adopt the WCAG 2.2, Level AA for all content, including mobile apps, to maximize access for all people with disabilities and ensure that recipients meet standards that account for changes in typical web and software development practices.

RWJF further strongly encourages HHS to update the rule regularly as new standards emerge.

Finally, RWJF recommends that HHS give consideration to the concerns raised by the Consortium for Constituents with Disabilities about the many exceptions to web accessibility compliance included in the 2023 Proposed Rule.

Nondiscrimination in the Use of Automated Decisionmaking Tools and Systems

Disability-related bias can be incorporated in a wide range of automated decisionmaking tools formally and informally used by issuers of health and health-related coverage as well as in the systemic procedures, policymaking, and individual patient/client/enrollee decisions made by recipients of federal financial assistance. For example, child welfare agencies may use predictive algorithms or clinical decision trees that rank a parent or child’s disability as a factor for taking away custody or denying reunification services. Those tools operate on the level of simple statistical correlation without individualized analysis of whether or how a family member’s specific disabilities and the potential for disability-related support affect the child’s wellbeing. 

Similarly, clinical guidance tools that point to the existence of multiple providers as a predictive risk-factor for opioid abuse fail to consider how people with multiple and significant disabilities will have multiple healthcare providers. In another example, the historic and ongoing lack of functional disability data in health records means that decisionmaking tools and systems have not been adequately trained to recognize how factors such as the use of personal care assistance are inadequately recognized in the allocation of home and community-based services and supports, including care coordination.

RWJF recommends that HHS explicitly clarify that prohibitions on discrimination already contained in the 2023 Proposed Rule, such as those found at (§ 84.68(b)(8)) and (§ 84.60(c)), fully encompass situations that involve some use of automated decisionmaking tools and systems, and take the opportunity to clarify that the employment of automated decisionmaking tools and systems by recipients must be transparent and readily subject to appeal.

Conclusion

Thank you for the opportunity to comment on the 2023 Proposed Rule. The provisions included in the 2023 Proposed Rule would improve access to care and a higher quality of life for all people with disabilities in the United States. RWJF encourages HHS to finalize the 2023 Proposed Rule as soon as practicably possible.

We have included numerous citations to supporting research, including direct links to the research. We direct HHS to each of the materials we have cited and made available through active links, and we request that the full text of each of the studies and articles cited, along with the full text of our comment, be considered part of the formal administrative record for purposes of the Administrative Procedure Act. If HHS is not planning to consider these materials part of the record as we have requested here, we ask that you notify us and provide us with an opportunity to submit copies of the studies and articles into the record. 

We look forward to continuing to work with the Department and other partners to ensure that everyone has the opportunity to achieve optimal health and wellbeing.

About the Robert Wood Johnson Foundation

The Robert Wood Johnson Foundation (RWJF) is committed to improving health and health equity in the United States. In partnership with others, we are working to develop a Culture of Health rooted in equity that provides every individual with a fair and just opportunity to thrive, no matter who they are, where they live, or how much money they have.