How assumptions can hurt patients with disabilities | Megan Morris, PhD | TEDxNYU Langone Health

Key Concepts

• Disability visibility in healthcare
• Intellectual and developmental disabilities
• Healthcare accommodations and supports
• Implicit bias in medical decision-making
• Importance of patient-centered care
• Data collection on disability status

David's Experience: A Case Study

The speaker introduces her uncle, David, who had an intellectual and developmental disability and epilepsy. She recounts several experiences where David's disability impacted his medical care negatively:

• Restraints and Communication: During one hospitalization, David was restrained and unable to communicate his needs due to assumptions about his intellectual disability. The speaker demonstrated he could communicate through a simple "yes/no" system.
• Assumptions About Functioning: In another instance, the medical team assumed David couldn't use the toilet and put him in adult diapers without assessment.
• End-of-Life Care: When David developed pneumonia and had difficulty swallowing, the doctor rejected a nasogastric (NG) tube (a common treatment) as "cruel" due to his disability and instead suggested hospice. David was discharged to a nursing home without the NG tube and died shortly after due to a recurrence of pneumonia.

The "Invisible Minority" and Historical Context

• Prevalence of Disability: Approximately 27% of adults in the United States have a disability, making them a significant but often overlooked group.
• Eugenics Movement: The speaker references the eugenics movement in the early 1900s, where people with disabilities were considered to have "bad genes," leading to institutionalization and forced sterilization.
• COVID-19 Rationing Plans: During the COVID-19 pandemic, seven states had rationing plans that deprioritized patients with disabilities, highlighting the continued devaluation of their lives.

The Importance of Documenting Disability

• Asking and Documenting: The speaker emphasizes the critical need to ask patients about any disability and document it in their medical chart. This can be done through intake forms, verbal questions, or patient portals.
• Identifying Gaps and Providing Accommodations: Documenting disability helps healthcare organizations identify gaps in care and provide necessary accommodations and supports. For instance, a whiteboard and marker could have enabled David to communicate effectively.
• Example Study: The speaker's team conducted a study training staff at 53 primary care clinics in Colorado, asking patients if they needed any accommodations or supports due to a disability. The study collected data on hearing, vision, cognition, mobility, communication, and ability to bathe or dress themselves. Despite initial staff discomfort, there were no patient complaints.
• Addressing Staff Discomfort: The speaker acknowledges that some staff members may feel uncomfortable asking about disability, which perpetuates the problem of invisibility.

The Call to Action

The speaker concludes by urging healthcare providers and organizations to create systems that document patients' disabilities to improve the quality of care and ultimately their lives. She emphasizes the value and contributions of people with disabilities and the importance of seeing them rather than just their diagnosis.