Date: September 8, 2023
Yesterday, the Department of Health and Human Services (HHS) and its Office for Civil Rights (OCR) released a long-awaited proposed rule that updates nondiscrimination regulations enacted under Section 504 of the Rehabilitation Act of 1973 (Section 504), the first U.S. federal civil rights law for people with disabilities. Section 504 prohibits discrimination on the basis of disability in programs and activities that the federal government operates or funds, but detailed regulations were only enacted under Section 504 after the disability community engaged in years of advocacy and public protest.
Over the past decade, people with disabilities have had to wait again for regulations to catch up as health care underwent technological changes, advances in deinstitutionalization and community-based care, increased recognition of healthcare disparities, and even a world-changing pandemic that exposed the degree to which stereotypes and implicit bias about the worth and capacity of disabled lives are still prevalent in health care decision-making.
There is much in the proposed rule that will help people with disabilities achieve equitable and effective healthcare in our evolving healthcare system. For example:
- New provisions broadly prohibit discrimination based on disability biases, stereotypes, and ableist assumptions about the worth or quality of life of disabled persons in “Medical Treatment” across such contexts as organ transplantation, participation in clinical research, and the delivery of lifesaving or life-sustaining treatment, including during periods of significant health care resource shortages.
- A requirement that online tools, self-service kiosks, and mobile applications used in health care meet technical accessibility standards to ensure that people with disabilities have full access to these increasingly common healthcare tools.
- Standards for accessible medical and diagnostic equipment that were first published in 2017 will finally become enforceable standards with requirements for the minimum availability of accessible equipment that, over time, will increase the ready availability of such equipment across healthcare settings.
- The fundamental principle that programs must be administered in the most integrated setting and the right of people with disabilities to receive home and community-based health-related services outside of institutions, recognized by the Supreme Court in the 1999 Olmstead v. L.C. decision, is explicitly stated and further clarified.
- Prohibits methods for evaluating the relative value of health care treatments and pharmaceuticals that automatically or inevitably place a lower value on benefits for people with disabilities and chronic conditions, thereby making those treatments unavailable or available only at higher costs, greater delay, or other preconditions.
- New provisions that recognize the rights of children, current and prospective parents, foster parents, and caregivers to have equal access to child welfare programs, supports, and services such as parent-child visitation, reunification, child placement, guardianship, and other skills-building programs without discriminatory assumptions about the capacity of people with disabilities to receive benefit under such programs, supports and services.
The new provisions show HHS’s commitment to reconciling Section 504, the Americans with Disabilities Act of 1990, and key cases that together enable people with various disabilities to achieve consistent and timely access to needed healthcare, so that they can pursue their own life goals and interests. DREDF shares this commitment.
DREDF was disappointed to see that the proposed rule does not include language defining the phrase “solely by reason of disability” in Section 504 to mean, simply, a direct or demonstrable causal relationship between the discrimination alleged and the person’s disability. As demonstrated by the disability community’s epic and ultimately successful battle to pull the CVS v. Doe case from the U.S. Supreme Court, that phrase has become a textual battleground in cases that threaten to gut disability civil rights. DREDF will call on HHS to add this important regulatory language.
The proposed rule will be officially published on September 14, 2023, and it will be followed by what is anticipated to be a 60-day comment period.