On November 1st, 2021, the National Council on Independent Living (NCIL) was invited to participate in a listening session hosted by the US Department of Health and Human Services (HHS), as well as the US Office of Civil Rights (OCR). The purpose of the listening session was to present organizations like NCIL, as well as the National Disability Rights Network (NDRN), United Spinal Association, and Bazelon Center for Mental Health Law with an opportunity to make comments pertaining to Section 1557 of the Affordable Care Act. NCIL’s statement at this listening session is as follows:
“Thank you for the opportunity to participate in this listening session on Section 1557 of the Affordable Care Act. The National Council on Independent Living is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Our member organizations include hundreds of the disability-run Centers for Independent Living and Statewide Independent Living Councils located all across the country providing direct services, advocacy, and support for disabled and aging people in meeting their goals for independent living.
The Affordable Care Act presented a landmark opportunity to offer equal and comprehensive health insurance coverage that included all Americans, including people with disabilities of all ages. Among the specific provisions of the ACA which made a profound difference for disabled Americans, were anti-discrimination and equity provisions that made coverage affordable, covered pre-existing conditions, offered essential benefits, and prohibited benefit limitation on the basis of health status or disability. The ACA explicitly outlawed these longstanding discriminatory policies, and Section 1557 was key in enforcing these reforms. Section 1557 offers anti-discrimination protections, providing a mechanism for addressing discrimination on the basis of protected status, including disability.
The basest form of discrimination is the denial of essential health services or treatments based on disability or health status. Notwithstanding, the denial of essential health services and treatments has been the default as states and providers have developed crisis standards of care in response to the COVID pandemic. The types of “zero sum” decision-making behind these crisis standards of care are felt most profoundly in Black communities, where resources are most limited in medical settings, and where racially-based implicit bias compounds disability discrimination, placing Black disabled people most at risk of being subjected to the denial of essential health care services.
Under the authority granted by Section 1557, HHS has an opportunity to provide leadership in the practice of promoting non-discriminatory policies and procedures across health care delivery systems. While OCR reminders about non-discrimination under the law have been helpful to state and local advocates, HHS has not been clear about the link between crisis standards of care and racial, and disability/health status discrimination contemplated by Section 1557. Guidance to states and providers under what types of standards would be considered discriminatory under Section 1557 could do much to address the threats to disabled people using health care systems, regardless of their locations.”
