Thank you for Submitting Comments!
New Rule Proposed for Section 504 of the Rehabilitation Act of 1973
Access to health care for people with disabilities should be a fundamental right. Yet, people with disabilities face so many barriers to health care and support services every day. To reduce these barriers, the U.S. Department of Health and Human Services is working to create new rules to protect our community from discrimination. Thank you for joining Disability Rights Oregon in showing support for the new rule and submitting comments to make it even stronger.
By Commenting on Proposed Regulations, You Played a Direct Role in Government Decisions
Public comments matter. Under federal law, government agencies are required to read and consider comments sent by the public, and that includes your comments! If the government fails to reflect the public’s feedback in the final rule, it could be vulnerable to legal challenge under the Administrative Procedures Act.
Judy Heumann, a fierce leader of the Disability Rights Movement, speaks at the 1977 Section 504 Sit-in in San Francisco, California.
Disability Rights Oregon analyzed this rule and prepared sample comments. To learn more, keep reading.
What Does the Rule Do?
The proposed rule, Discrimination on the Basis of Disability in Health and Human Service Programs or Activities, updates and improves regulations for Section 504 of the Rehabilitation Act of 1973, the landmark national law that protects qualified individuals in federally funded programs from discrimination based on their disability. It’s been 40 years since Section 504 regulations have been updated, so it is past time for federal law to reflect the current state of our healthcare system, including how access to new technologies has made accessibility a much more affordable and attainable reality.
Our Recommendations to the Rule
Disability Rights Oregon is pleased with the many issues the proposed rule addresses to improve people’s lives, including clear identification of some discriminatory medical practices, increased requirements for information and equipment access, mandated integrated service settings—in general and during public crises, like the COVID-19 pandemic—and more.
But some of the proposed regulations don’t go far enough, and others need further clarification to adequately address the many systemic issues people with disabilities face when seeking health care. These areas are:
Medical Treatment: Research shows that damaging stereotypes about people with disabilities can lead medical professionals to make care decisions based on discriminatory beliefs. While the new rule does identify specific actions that are illegal—like making health care decisions based on judgments that someone will be a burden because of their disability—additional language is needed to make clear the list is not exhaustive. There are many ways patients with disabilities can be treated unfairly by doctors and other medical professionals and, sometimes, those actions are part of a larger pattern.
Value Assessment Methods: The new rule correctly identifies the use of Quality Adjusted Life Year (QALY) as discriminatory. QALY is an assessment method where the lives of people with disabilities, patients with chronic diseases, older adults, and people of color are arbitrarily assigned a lower value because of existing health care inequities. QALY is wrong and DRO strongly agrees, but we also know that, right now, Oregon’s Medicaid appeal process almost never results in someone regaining coverage—even though the Oregon Health Authority still uses QALY. This proposed rule should identify specific ways for people with disabilities to fight back when coverage has been denied, and require they be given access to all of the information that was used to deem them ineligible.
Child welfare programs and activities: There are three areas where this section of the proposed rule should be improved:
Integrated Settings: People with disabilities have a right to be included in society, where they can fully participate and have equal opportunities. The proposed rule upholds this right, but additional language is needed regarding the rights of children. It must require that youth with disabilities be offered reasonable accommodations including prompt needs assessments, a support plan, and benchmarks to measure progress. Resources should also be available throughout the system, not just in segregated, congregate care, institutional, or other less integrated situations. Children must be routinely reassessed, too, and, as soon as appropriate, be immediately moved to a more integrated living environment, where they can learn, grow, and develop a more positive self image alongside their peers.
Generally Prohibited Activities: The proposed rule broadly prohibits discrimination with regards to parents, children, foster care providers, other caregivers, and all other parties involved in the child welfare process, but we all know it only takes one bad apple to spoil things. The rule should emphasize how important it is that state agencies ensure that all of their services, contractors, placements, and foster homes follow Section 504’s nondiscrimination provisions. The guidance should also reflect how important it is for all of these service providers to strongly uphold the civil rights of youth entrusted to their custody.
Parental Fitness: Parenting is a fundamental right, and the proposed rule needs to be updated regarding how child welfare agencies determine who is fit to raise a child. Stereotypes based on disability status must be prohibited, and parents with disabilities must be evaluated in the same manner as parents without disabilities, including when agencies are assessing potential risks to children. The rule should also require agencies to provide reasonable process modifications, individualized training in child care tasks like diaper changes and feeding, and effective, accessible communication. Parents with disabilities must be given equal opportunity to succeed.
Integration: Disability Rights Oregon wholeheartedly agrees with the new rule’s broad application of Section 504 in this area: Any recipient of federal financial assistance, private or public, should be required to operate in the most integrated and appropriate setting while meeting the needs of people, regardless of their disability status. Additionally, monitoring of civil rights violations must be heightened during public health emergencies, natural disasters, and other crises. The complaints we fielded throughout the COVID-19 pandemic clearly demonstrated how such events can lead to increased violations. Lastly, we recommend adding ironclad language clarifying that failure to make reasonable modifications to policies, practices, or procedures is discriminatory and illegal.
Digital Accessibility: Inaccessible technology deprives individuals with disabilities equal opportunity to access health care and other critical areas of modern society. That’s why DRO supports the proposed rule’s specific technical standards for accessibility regarding kiosks, websites, mobile apps, and live-audio content. As a result of the many barriers people with disabilities faced trying to access in-person and virtual health care during the COVID-19 pandemic, we are also making the following recommendations:
Kiosks: Kiosks have become an increasingly common way to access health care and often supplement or replace the need for an in-person check-in at a hospital or clinic. To ensure patient understanding and equal access, DRO recommends kiosk-specific technical requirements be added to the proposed rule, requiring people with disabilities be offered services from front desk staff as an alternative.
Websites and mobile apps: DRO applauds requiring organizations receiving federal funding to meet WCAG 2.2 standards for web accessibility, and we believe the same standards should be applied across recipients regardless of size. People without disabilities can access consistent quality of care regardless of how big or small their service provider is, and the same should be true for our community.
Live-Audio Content: Providing live-audio content is a vital access need for individuals who are Deaf or Hard of Hearing, and we believe a compliance deadline of one year after regulations take effect is long enough, instead of the longer timelines currently being proposed. Many common platforms already have an option to turn on captions, so this much-needed accessibility advancement shouldn’t be difficult to fulfill.
Accessible Medical Equipment: Accessing medical equipment is crucial for proper diagnosis and treatment of individuals with disabilities, and DRO strongly supports the proposed rule’s requirement that, 60 days after regulations go into effect, all newly acquired equipment must be accessible. Since people with disabilities use this equipment more often than people without disabilities, however—even given the multitude of systemic barriers preventing them—these regulations need to go further. DRO is making three specific recommendations:
Cover all equipment: Regulations should apply broadly and not distinguish between diagnostic and nondiagnostic medical equipment. Many examinations require frequent transfers and specimen collection, and people with mobility disabilities may need equipment such as gurneys, lifts, and bathroom commodes for proper diagnosis. Under the current proposed rules, an examination table would be required to be accessible, but the medical equipment needed to transfer them to the examination table would not.
Provide more accessible tables and scales: The proposed rule should require that multiple departments, clinics, or specialties each have at least one accessible examination table and weight scale. Having to transfer tables and scales from one department to another, especially in large-scale facilities, increases wait times and unnecessary frustration and embarrassment for people with disabilities.
Apply different requirements based on patient population: How much of a facility’s medical equipment required to be accessible should be increased, especially at places serving specific populations. Facilities specializing in treating conditions that affect mobility, for example, should be required to have 70 percent of their equipment accessible, not less than half. Most, if not all, individuals seeking care in these facilities are dealing with a health condition that warrants accessible medical equipment, and types of patients served will become even more important to consider as our population ages.
Equal Treatment and Co-occurring Disabilities: While the new rule clarifies regulations surrounding discrimination and community integration, equal treatment for individuals with co-occurring diagnoses has been overlooked, and that’s a problem. We know many people with disabilities in Oregon have a difficult time obtaining care with a combined mental health/substance abuse or mental health/developmental disability, so DRO is recommending a new section be added. The government must make crystal clear how Section 504 applies when evaluating parity in mental health, addiction, and other behavioral health services.