AAP Voices Blog

A Step in the Right Direction to End Disability Discrimination in Health Care 

As a pediatric rehabilitation medicine physician, my clinical practice exclusively serves children with disabilities. As both a physician and health services researcher, I have dedicated my career to optimizing the health, functioning, well-being and belonging of disabled children. Unfortunately, the way health care is delivered (or not delivered) frequently discriminates against my patients and others like mine. Recently one mother reported an anesthesiologist told her it was okay to estimate her child’s weight before surgery because there wasn’t a wheelchair scale, and it would be “too much of a hassle” to figure out how to weigh him. Another mother cried in my office recounting how doctors encouraged ‘pulling the plug’ in the NICU and told her that her baby would have a bad quality of life (due to prematurity and hypoxic ischemic encephalopathy). As she sobbed, she struggled to get out the words, “I am giving my baby a good life full of love.” We talked about how her baby would have a lifetime of disabilities and that people with disabilities can have great lives. She said, “I know, look how happy my baby girl is.” After encounters like these, I think about how I can help my colleagues change their misperceptions about disabilities and how desperately we need to stop ableist treatment in health care. 

The U.S. Department of Health and Human Services (HHS) made a giant step toward eliminating disability-based discrimination with its proposal in September. HHS seeks to update provisions in Section 504 of the Rehabilitation Act of 1973.  The intent is to bolster protections for people with disabilities who were originally outlined in the federal legislation approximately 50 years ago. As many pediatricians know, Section 504 of the Rehabilitation Act of 1973 is a landmark civil rights law. It prohibits disability discrimination for any program, place or activity that receives federal funding or is conducted by a federal agency such as hospitals, nursing homes, and schools. Pediatricians likely have children in their practices who are served by 504 plans at school. But most of us probably didn’t know about the civil rights battle that occurred in the 1970s until we saw the movie Crip Camp. Judy Heumann and other disability rights activists held protests around the country, including a sit-in at the Department of Health Education and Welfare building in San Francisco that lasted for 26 days. The efforts of those disability rights advocates and others paved the way for Section 504 to serve as the foundation for the Americans with Disabilities Act (ADA). 

The proposed updates to Section 504 provide opportunities to protect the rights of people with disabilities so they can access health and related services without discrimination. The updates would ensure that Section 504 is appropriately interpreted in a way that is consistent with the ADA, the ADA amendments of 2008 and the Affordable Care Act. The HHS Office of Civil Rights Director, Melanie Fuentes Rainer said, “[The] rule is long overdue and a major step forward in the fight to ensure that people with disabilities are not excluded from or discriminated against in health care and social services across the United States.”  

Particularly important to children's health is a section clarifying requirements in child welfare services. It would include language indicating that medical treatment decisions should not be based on biases or stereotypes about individuals with disabilities. The updates would conform with case law and the ADA to ensure that ableist judgments, e.g. the belief that the life of an individual with a disability has less value than the life of a person without one, are not a part of medical decision to deny access to care. 

“[The] rule is long overdue and a major step forward in the fight to ensure that people with disabilities are not excluded from or discriminated against in health care and social services across the United States.” 

The AAP has long engaged in efforts to reduce disability-based discrimination, such as developing an organ transplant policy statement highlighting the need to end discrimination against children with Trisomy 21 and other intellectual disabilities. Many AAP members recently worked with the Maternal and Child Health Bureau on the Blueprint for Change – a framework to advance a well-functioning system of care.  A special issue was published in Pediatrics detailing the Blueprint in 2022. A key pillar of the Blueprint is assuring equitable care. 

Recently, the AAP received a $7.5 million cooperative agreement to serve as a National Center for a System of Services for children and youth with special health care needs. This Center will help develop a roadmap to support the implementation of the Blueprint for Change.    

As I think about the care children with disabilities need and deserve, I am honored to be a part of an organization that includes anti-disability discrimination language in its bylaws. I am excited to work on behalf of children with disabilities by collaborating to advance health equity. I am delighted to support the proposed Section 504 updates. I encourage all of us to think about how we can mitigate disability discrimination in health care.