Response to proposed rule changes of Section 1557, the nondiscrimination provision of the Affordable Care Act (ACA)
Section 1557 of the ACA prohibits discrimination in health care on the basis of race, color, national origin, sex, age, and disability.
We strongly oppose the proposed rule changes which seek to eliminate and limit the law’s protections for people with disabilities, especially those who have limited English proficiency (LEP), LGBTQ+ persons, as well as individuals whose identities intersect multiple protected classes.
Below is our full letter commenting in response to Section 1557 sent to the Department of Health and Human Services.
August 13, 2019
Director, Office for Civil Rights
U.S. Department of Health and Human Services
Hubert H. Humphrey Building, Room 509F
200 Independence Avenue SW
Washington, DC 20201
Re: HHS Docket No. HHS-OCR-2019-000, RIN 0945-AA11, Comments in Response to Section 1557 NPRM
Dear Mr. Severino:
Disability Rights California (DRC) appreciates this opportunity to share our views on the proposed policy changes in interpreting and enforcing Section 1557, the nondiscrimination provision of the Affordable Care Act (ACA). We write to express opposition to the U.S. Department of Health and Human Services (HHS) proposed rule on Section 1557.
DRC is the designated protection and advocacy agency for California, mandated to advance the civil rights of Californians with disabilities. Since 1978, DRC has provided critical advocacy services for people with disabilities and last year alone responded to advocacy requests from nearly 25,000 Californians with disabilities. Our legal work includes individual and impact litigation, direct advocacy services, outreach and training, and investigations of abuse and neglect. DRC protects and advocates for the rights of all Californians with disabilities, regardless of their ethnicity, cultural background, language, sexual orientation, gender identity, or immigration status. DRC advocates on behalf of individuals who are particularly in need of accessible health care services and who would be significantly harmed by the proposed rule. DRC has asserted the rights of people with disabilities to access in their health care services, including litigating the right to notices in accessible formats for people who are blind or visually impaired. We recommend HHS not finalize this regulation in whole or in part.
Harm to People with Disabilities from Proposed Rule Changes
Section 1557 of the ACA prohibits discrimination in health care on the basis of race, color, national origin, sex, age, and disability. We strongly oppose the proposed rule changes which seek to eliminate and limit the law’s protections for people with disabilities, especially those who have limited English proficiency (LEP), LGBTQ+ persons, as well as individuals whose identities intersect multiple protected classes. The proposed rule would harm the individuals and communities that we serve. For example:
Individuals with disabilities and their families could be hurt by many of the proposed changes, which will:
- Exempt many insurance companies and many health plans from nondiscrimination requirements;
- Delete a provision that prohibits insurance plans from discriminating on the basis of disability when deciding what benefits to cover and extra coverage costs;
- Eliminate the requirement for hospitals, doctors, insurers, and other health care providers to tell people about their rights, including the right to auxiliary aids and services at no cost, how to ask for such aids/services, and how to make a complaint if they encounter discrimination;
- Weaken the current requirements for serving individuals with LEP;1
- Potentially limit the types of auxiliary aids and services available;
- Narrow the scope of sex discrimination protections, and otherwise weaken protections for LGTBQ+ patients with disabilities;2
- Make it harder for individuals who are being discriminated against because of a relationship or association with someone with a disability to enforce their rights; and
- Make it more confusing to prove discrimination and go to court.
HHS underwent an extensive process to develop regulations for Section 1557, including a Request for Information, proposed rule, and final rule.3 HHS considered more than 24,875 public comments submitted for the 2016 rule.4 There is no reason to reopen this rule and ignore the reasoned process HHS has already undertaken.
We request that HHS retain the current definition of a “covered entity.” The proposed rule seeks to radically narrow the scope and applicability of Section 1557, contrary to the plain meaning of the statute. Congress made clear in Section 1557 that if one part of an entity receives federal financial assistance, the entire entity should be covered. It also clearly intended Section 1557 to address discrimination in health insurance.
We disagree with HHS’ proposal to delete the current requirement that covered entities provide notice, with every significant communication to individuals, that they do not discriminate based on disability or other prohibited grounds; that they provide auxiliary aids and services for people with disabilities, including qualified interpreters and information in alternate formats; and how to obtain those auxiliary aids and services. Without the notice, members of the public, and especially people with LEP, will have limited means of knowing that auxiliary aids and services are available, how to request them, what to do if they face discrimination, and their right to file a complaint. As HHS itself notes in the proposed rule, “repealing the notice of nondiscrimination requirement may result in additional societal costs, such as decreased utilization of auxiliary aids and services by individuals with disabilities due to their reduced awareness of such services.”5 We agree, and therefore object to removing this requirement.
HHS should retain strong, clear language prohibiting insurance companies from discriminating on the basis of race, color, national origin, sex, age, or disability in a number of areas, including marketing plans, designing benefits, coverage claims, or imposing additional costs. These protections are especially important for people with disabilities and those with serious or chronic conditions. Eliminating this regulatory provision could result in health insurers illegally excluding important benefits, designing their prescription drug formularies in a way that limits access to medically necessary care, or cherry-picking healthier enrollees through marketing practices. It may make it harder for people who experience discrimination to enforce their rights through administrative and judicial complaints.
We urge HHS to retain the language in the 2016 Final Rule regarding effective communication for individuals with disabilities. In the proposed rule, HHS changes the definition of auxiliary aids and services, and does so without explanation. HHS claims to import the definition of auxiliary aids and services from the regulations for Title II of the Americans with Disabilities Act, but deletes “[a]cquisition or modification of equipment and devices; and [o]ther similar services and actions” from the list of examples of aids and services. This could create confusion, as it takes what is now a clearly illustrative list and implies that it is exhaustive. HHS should retain the definition of “auxiliary aids and services” from the 2016 final rule. Furthermore, we oppose any proposal to exempt entities with 15 or fewer employees from the requirement to provide effective communication. In some areas of the country, this could effectively bar access to many providers, including specialists who are essential to providing high quality health care to individuals with chronic health conditions.
We oppose HHS’ proposal to delete regulations that prohibit discrimination on the basis of association with a protected class. This will create uncertainty and confusion regarding the responsibilities of providers and the rights of persons who experience discrimination, and inconsistencies with other regulatory requirements that entities are subject to, including the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.
We also believe that HHS incorrectly limits the remedies available under Section 1557 in the proposed changes to Section 92.301 (newly designated Section 92.5). One of the goals of Section 1557 was to build and expand on prior civil rights laws such that individuals seeking to enforce their rights would have access to the full range of available civil rights remedies and not be limited to only the remedies provided to a particular protected group under prior civil rights laws. This is why Section 1557 expressly provides individuals access to any and all of the “enforcement mechanisms provided for and available under” the cited civil rights statutes, regardless of the type of discrimination. The proposed rule makes it harder and more complicated to address prohibited discrimination. HHS should retain current Section 92.301.
HHS seeks comments on a number of other proposed changes which we oppose. The Section 1557 final rule was the subject of a lengthy development process that included substantial public input and comment. Revisiting all of the previously settled issues in the final rule, particularly those far beyond the justification offered in the NPRM, creates uncertainly and further weakens finality. HHS should not change the current requirements to provide “reasonable modification,” and import exemptions for “undue hardship,” The substitute language is from regulations related to employment, and is unnecessary, ill-fitting, and inappropriate for a health care context.6 Exemptions should not exist regarding elevators in multistory buildings, as this is likely to severely limit access to necessary medical care.7
Last, we note that people with disabilities, like all people, have intersectional identities, and that the anti-discrimination mandate in 1557 is designed to prohibit discrimination based on a single identity as well as the intersection of two or more identities such as race and disability, age and disability, or sex and disability. The proposed rule seeks to strip protections from persons with limited English proficiency, LGBTQ+ individuals, and women. We stand in solidarity with other marginalized groups in objecting to this proposed rule because of and in addition to its impact on affected people with disabilities.
Thank you for the opportunity to provide comments on the proposed rule. We urge HHS not to finalize these changes. If you have questions about our comments, please contact Elissa Gershon at firstname.lastname@example.org.
1 Current notice requirements are particularly important for people with disabilities with LEP, who, compared to English speakers, have higher rates of disability, higher rates of psychological distress and mental illness, and lower rates of visiting doctors or having a regular healthcare provider. LEP individuals with disabilities report poor health outcomes related to difficulty communicating and comprehending medical information from providers, including challenges with understanding written information at the doctor's office and reading prescription bottles. Kim G, Worley CB, Allen RS, et al. Vulnerability of older Latino and Asian immigrants with limited English proficiency. J Am Geriatr Soc. 2011; 59:1246–1252. See generally: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6071899/. – (Return to main document)
2 These concerns are grounded in available research on the intersection of disability and sexual orientation and gender identity. A 2012 study by the American Public Health Association found that “the prevalence of disability is higher among lesbian, gay, and bisexual adults compared with their heterosexual counterparts; lesbian, gay, and bisexual adults with disabilities are significantly younger than heterosexual adults with disabilities.” The study concluded the higher rates warranted “major concern.” Fredriksen-Goldsen, Karen, et al. Disability Among Lesbian, Gay, and Bisexual Adults: Disparities in Prevalence and Risk, Am J Public Health. 2012 January; 102(1): e16–e21. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3490559/. Likewise, the prevalence of disability, especially mental health disabilities, among the transgender population is high. https://dredf.org/wp-content/uploads/2018/07/Health-Disparities-at-theIntersection-of-Disability-and-Gender-Identity.pdf. Hispanic LGB older adults (65+) face extreme health disparities compared to their non-Hispanic counterparts: they are 30% more likely to have diabetes, 7.5 times more likely to have experienced psychological distress, and are 11% more likely to report they have nowhere to go when they are sick. https://williamsinstitute.law.ucla.edu/research/aging-lgbt-adults-california-2/ – (Return to main document)
3 U.S. Dep’t of Health & Human Servs., Request for Information Regarding Nondiscrimination in Certain Health Programs or Activities, 78 Fed. Reg. 46558 (Aug. 1, 2013); U.S. Dep’t of Health & Human Servs., Nondiscrimination in Health Programs and Activities (Notice of Proposed Rulemaking), 80 Fed. Reg. 54172 (Sept. 8, 2015); U.S. Dep’t of Health & Human Servs., Nondiscrimination on the Basis of Race, Color, National Origin, Sex, Age, or Disability in Health Programs or Activities Receiving Federal Financial Assistance and Health Programs or Activities Administered by the Department of Health and Human Services or Entities Established under Title I of the Patient Protection and Affordable Care Act, 45 C.F.R. Part 92, 81 Fed. Reg. 31376 (May 18, 2016)(“2016 Final Rule”). – (Return to main document)
4 81 Fed. Reg. 31376. – (Return to main document)
5 84 Fed. Reg. 27882-83. – (Return to main document)
6 84 Fed. Reg. 27868. – (Return to main document)
7 84 Fed. Reg. 27867. – (Return to main document)
Disability Rights California is the agency designated under federal law to protect and advocate for the rights of Californians with disabilities. The mission of Disability Rights California is to advance the rights, dignity, equal opportunities, and choices for all people with disabilities.
Disability Rights California is a member of the National Disability Rights Network (NDRN). NDRN is a nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems, the largest provider of advocacy services to people with disabilities in the United States.