Note: AAPD is nonpartisan and does not support or oppose any candidate for office. We do urge individuals with disabilities and their allies to thoroughly research the candidates who will be on their ballot and consider which candidates demonstrate a commitment to prioritizing issues that are important to people with disabilities.
As Americans begin to vote, AAPD is providing information about some of those key disability issues, and relevant policy changes in those issue areas since the last presidential election.
Ask any disabled person: for many of us, going to the doctor isn’t just unpleasant, but it can involve discriminatory and demeaning interactions. Access to healthcare has long been a critical issue in presidential elections, and for disabled Americans, the stakes are especially high.
Despite legislative improvements delivered by the Affordable Care Act and the Inflation Reduction Act, healthcare costs remain extremely high for Americans. The ongoing COVID-19 pandemic has revealed that persistent gaps in access to high-quality, affordable healthcare remain a reality for many and that our healthcare system is not robust enough to help everyone who needs it. And, research continues to show healthcare professionals are biased against people with disabilities.
The Department of Health and Human Services (HHS) has recently updated existing regulatory law to ensure that people with disabilities are treated fairly when seeking medical care and when interacting with human and social services entities like child welfare agencies. For the disability community, the revised Section 504 and Section 1557 are among the most impactful and transformative new regulations to be issued in a long time.
Section 504 Rules
Section 504 aims to prevent discrimination against people with disabilities in government-funded programs or activities. Section 504 covers all health and human services programs and activities funded by HHS, such as hospitals and doctors that accept Medicaid or Medicare or states’ child welfare programs.
The final rule from the HHS, released on May 1, 2024, is a result of decades of advocacy by people with disabilities and provides more robust protections for the rights of disabled individuals. It also addresses unfair treatment in the healthcare system and sets clear accessibility standards that must be met.
There are many updates from this new regulation; some are minimal, like changes in definitions, and some are major and life-changing new policies for disabled Americans, including:
- Prohibiting discrimination in medical treatment – Disallows discrimination in administration, criteria, and protocols related to the medical care of individuals with disabilities, including how resources are distributed
- Prohibits discrimination in organ transplant programs and crisis standards of care
- Makes sure that medical decisions are not based on the belief that the life of a disabled person has less value than the life of a person without a disability
- Value assessment methods – These tools are used to help decide the proper medical treatment for specific situations and costs. The rule ends the discriminatory application of these methods, or using these methods to deprioritize the medical needs of people with disabilities.
- Accessibility of medical equipment – The new rule adopts the U.S. Access Board’s accessibility standards for medical equipment
- Web, mobile app, and kiosk accessibility – The rule adopts the Web Content Accessibility Guidelines (WCAG) 2.1, Level AA accessibility standards for all websites and mobile applications that are part of any stage of the healthcare delivery process, as well as self-service kiosks in offices
- Child welfare programs and activities – The rule prevents parents with disabilities, or prospective parents seeking to adopt, from being discriminated against on the basis of their disability. Too often, child welfare staff assume a parent with a disability, especially BIPOC parents with disabilities, cannot provide adequate parenting.
- Clarifies that states cannot remove children simply because the parents take prescribed medications for opioid use disorder
- Parenting evaluation tools and materials must assess the individual’s parenting ability and not their disability
- Community integration – helps make sure that people with disabilities get the support they need in the most integrated setting that is appropriate for them
- Defines “most integrated setting” as environments where people with disabilities can fully engage with everyone in their community and live, work, and receive services as they please with the freedom to make their own choices. This is consistent with other legal standards derived from the Olmstead v. L.C. Supreme Court decision.
- Updates standards and definitions –
- The rule reinforces many of the definitions in the Americans with Disabilities Act, including for service animals and mobility devices
- The rule clarifies that term “disability” should be interpreted broadly to provide as much coverage as possible. Also, the Department now lists long COVID as a condition that may constitute a disability.
To see what AAPD said about the Section 504 Regulations when they were finalized and released, read our statement here.
Section 1557 Rules
While Section 504 is disability-specific, Section 1557 of the Affordable Care Act prohibits discrimination based on race, color, national origin, sex, age, or disability in covered health programs and activities. The second regulation we are summarizing sought to update regulations about Section 1557 of the Affordable Care Act.
As AAPD President and CEO Maria Town said in our statement about this regulation, “The protections established in this rule are significant because they provide protection not only for disabled people as a community but especially for multiply marginalized disabled people [who] are the most likely to face discrimination or substandard care when trying to receive healthcare.”
The Section 1557 final rule, released on April 26, 2024, enables healthcare settings to be safer and fairer for the people who need them most. Below are some of the updates made to the final rule:
- Requires services be provided in the most integrated setting, bringing HHS regulations in line with the Supreme Court decision in Olmsted v. L.C.
- Requires effective communication and reasonable modifications for people with disabilities, which includes accessibility standards for buildings and facilities, as well as ensuring that health programs or services offered electronically (e.g., telehealth) are accessible for people with disabilities
- Covered entities must provide auxiliary services and language interpretation
- Covered entities must post notices providing information on how to submit and process complaints and how to ask for accommodations/communication assistance
- For the first time, federal law includes sex discrimination in its protections in healthcare, including discrimination based on: Sex characteristics (including intersex traits), pregnancy-related conditions (including termination of pregnancy), sexual orientation, gender identity, and sex stereotypes
- Preempts state laws banning gender-affirming care
- Requires mitigation of harm that can result from the use of patient care decision support tools (such as Artificial Intelligence or algorithms) that use input factors such as color, national origin, sex, age, or disability
- Mandates staff training on implementation and compliance
Conclusion and Further Reading
To see what AAPD said about the Section 1557 Regulations when they were finalized and released, read our statement here.
To learn more about these impactful regulations, watch AAPD’s webinar, Strengthening Disability Rights: New Section 504 + 1557 Rules, with our President and CEO Maria Town and HHS’s Director of the Office for Civil Rights, Melanie Fontes Rainer.
AAPD has been in enthusiastic support of both of these new regulations. We would like to see these rules continue to be implemented, so their benefits for our community can be fully realized.
Unfortunately, the Attorneys General of 17 states have challenged these new nondiscrimination protections in a recent lawsuit filed in federal District Court. The lawsuit seeks to not only discard the new regulations but also severely undermine the rights of people with disabilities to receive healthcare and other services and to live in the community, rather than being forced to live in a nursing home or institution. AAPD is very alarmed by this challenge to necessary and long-overdue disability nondiscrimination protections.
Federal regulations can change with new presidential administrations. New administrations sometimes overturn or re-regulate the previous administration’s regulations.
Have you voted yet? Be sure to check out AAPD’s state guides for information on accessible voting, and make a plan to vote on or before November 5, 2024.