ACLU Responds to Federal Regulations Expanding Disability Nondiscrimination Protections

WASHINGTON – The U.S. Department of Health and Human Services has announced the filing of new regulations expanding prohibitions on disability discrimination in health care and child welfare settings. The regulations, which will be published formally in the Federal Register next week, apply to health care and child welfare entities that receive federal financial assistance.

The regulations prohibit health care providers from denying treatment to disabled patients based on bias or perception of the value or quality of life of the patient, or based on algorithmic metrics that systemically devalue the life of people with disabilities. Disabled patients frequently experience delays or denials of medical care because of providers’ – or algorithms’ – bias and perception about their quality of life.

“People with disabilities face pernicious discrimination in health care and the child welfare system. Too often, our lives are viewed as ‘less valuable’ in the health care system, or we’re targeted for undue scrutiny by child welfare agencies simply because we have a disability,” said Zoe Brennan-Krohn, director of the American Civil Liberties Union’s Disability Rights Program. “These regulations, at long last, make it clear that bias has no place in medical care, and that practices that exclude or devalue our lives are disability discrimination. We applaud this action from the Biden administration.”

Notably, these new regulations also specifically encompass disability discrimination in organ transplants. The ACLU has been fighting the widespread exclusion of patients with disabilities – especially intellectual and developmental disabilities – from organ transplants for years, and we welcome the regulation’s firm position on this issue.

The regulations outline the importance of effective communication in health care, including in informed consent. They discuss the importance of providing information in plain language and recognize the value of supported decision-making in health care decision-making.

In addition, the regulations provide much-needed guidance on prohibiting discrimination in child welfare settings. Too often, parents with disabilities face investigation from child welfare agencies, removal of their children, or termination of their parental rights because child welfare workers and courts apply stereotypes and generalizations of people with disabilities to determine a parent’s fitness, rather than making an individualized assessment of the parent’s abilities. The regulations make clear that reliance on stereotypes is prohibited, and affirm that child welfare agencies must provide reasonable modifications in policies, practices, and procedures to remove barriers to services and avoid discrimination on the basis of disability. Critically, under the regulations, child welfare agencies would be prohibited from requiring parents to relinquish custody, agree to “voluntary” placement, or forfeit parental rights to secure services for their children with disabilities.

“Relying on stereotypes of people with disabilities to justify removal of their children and termination of their parental rights replicates our country’s shameful history of sterilizing people with disabilities on the assumption that they are not capable of parenting,” said Aditi Fruitwala, senior staff attorney with the ACLU’s Center for Liberty. “The new regulations unequivocally confirm that these practices are impermissible discrimination.”