By Olivia Keller, Public Policy Manager
In a monumental move aimed at bolstering civil rights in healthcare, the U.S. Department of Health and Human Services (HHS) recently introduced two pivotal rules to strengthen nondiscrimination protections in healthcare. The first rule, under Section 1557 of the Affordable Care Act (ACA), aims to fortify protections against discrimination based on race, color, national origin, sex, age, and disability. The second, a rule under Section 504 of the Rehabilitation Act, specifically bolsters protections against disability discrimination. Together, these rules are significant strides towards ensuring equal access to healthcare for all individuals, including those who have limb loss and limb difference.
The HHS’s new rule under Section 1557 of the ACA is not focused on disability specifically, but provides comprehensive safeguards against discrimination based on race, color, national origin, sex, age, and disability. The 1557 rule expands the protections provided by section 1557 to all health programs and activities funded or administered by HHS. This includes state Medicaid programs, physicians’ offices that accept Medicare or Medicaid, hospitals, health clinics, and private insurers taking part in federally funded and state health insurance marketplaces.
The protections provided by this rule are particularly meaningful for people who are multiply marginalized, including people who have disabilities and are people of color and/or LGBTQIA+. Not only does the 1557 rule require accessibility standards for buildings and facilities for people who have disabilities, but it also requires that telehealth services be accessible. This access requirement includes individuals with limited English proficiency. It also codifies prohibition against sex discrimination to include discrimination based on sexuality, gender identity or expression, pregnancy, sex characteristics, and stereotypes.
The Section 504 rule, Discrimination on the Basis of Disability in Health and Human Services Programs or Activities, ensures that medical decisions are not influenced by stereotypes or undervaluing the lives of people who have disabilities. This rule reflects over fifty years of advocacy by the disability community and addresses critical areas such as discrimination in medical treatment, enforceable standards for accessible medical diagnostic equipment, and the accessibility of web content and mobile applications. The rule helps protect people who have disabilities from discrimination in any program or activity receiving funding from HHS, including health and social service programs. This rule goes beyond the1557 rule requiring accessibility standards for buildings and facilities, and also requires accessibility standards for medical diagnostic equipment, such as exam tables and mammography machines.
The 504 rule also ensures nondiscrimination in services provided by child welfare agencies. This rule change is significant for people who have disabilities given that parents who have disabilities are two times more likely to be involved with the child welfare system than their nondisabled peers and three times more likely to have their parental rights terminated.1 In fact, most states allow Child Protection Service (CPS) professionals to use a parent’s disability status in decision-making processes and 34 states use disability status as grounds for the termination of parental rights.
Parents who have disabilities rarely receive accommodations in parental assessments, home evaluations, or service delivery, nor do they receive services to prevent out-of-home placements or needed parental and personal support. The 504 rule provides detailed requirements prohibiting discrimination against parents and prospective parents who have disabilities by federally funded child welfare and adoption agencies.
Both rules are monumental for the disability community, including people who have limb loss and/or limb difference, as they address long-standing barriers to equitable healthcare access and treatment. Ensuring the accessibility of buildings and medical diagnostic equipment will help improve disparities in access to care and quality of care. Prohibiting disability discrimination in child welfare services and programs will require CPS professionals to consider adaptive processes that take place in the parent-infant relationship, such as an infant learning to wrap their arms around a parent’s neck to be lifted out of a crib when a parent has upper limb loss or limb difference, and the harm done in developing co-adaptive skills when a child is removed from the home.
By addressing barriers to access, clarifying obligations, and enhancing enforcement mechanisms, these rules contribute to creating a healthcare system that is truly accessible to all, regardless of disability status.