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Improving Equity for Patients With Disabilities

02/02/2024

A young boy in a wheelchair smiling at an adult.

By Kori Eberle, Cristina Sarmiento, MD, and Megan A. Morris, PhD, MPH, CCC-SLP

Our study in the January 2024 issue of The Joint Commission Journal on Quality and Patient Safety (JQPS) describes a foundational step healthcare organizations need to take to facilitate the provision of equitable care: routine and systematic documentation of patients’ disability status in the electronic health record (EHR).

Without systematic documentation of patients’ disabilities and accommodation needs as a self-reported demographic characteristic in the EHR, healthcare teams are unable to deliver accessible, equitable care to patients with disabilities.

Individuals with disabilities are one of the largest and most underserved subpopulations in the United States, facing significant disparities in health outcomes and healthcare access. People with disabilities have been historically under-recognized in healthcare equity efforts and initiatives, despite experiencing significant and pervasive disparities in the receipt of high-quality healthcare services.

To address this, multiple federal laws, including the Americans with Disabilities Act and the Affordable Care Act, require healthcare organizations to provide equitable care to patients with disabilities through accommodations and modification of policies and procedures. However, many healthcare organizations struggle to meet this requirement.

The first step to provide accommodations is to collect information about patients’ disability status and accommodation needs. Vast variability exists regarding how – or if – they are collecting this information, and how the information flows throughout the entire health system to affect care.

Identifying Gaps in Documentation

We conducted qualitative interviews with 15 U.S. healthcare organizations that varied in size and location with the goal of understanding their current processes for documenting disability status and accommodation needs in the EHR.

During the interviews, participants stressed that a lack of standardized disability and accommodation needs, and underdeveloped workflow processes resulted in:

  • Inconsistent collection of information
  • Variability in how information is documented
  • Difficulty using information to proactively prepare accommodations for patient visits

Additionally, participants reported that since disability status and accommodation needs can affect all patient interactions with a health system, implementing systematic collection and related workflows are often complex and challenging.

Opportunities for Successful Documentation

Based on the interviews, we identified several opportunities for improvement, including stricter enforcement of current policies, and additional resources and standards to guide documenting disability status and accommodation needs. Participants reported that increased federal policies requiring documentation would serve as an effective impetus for health systems to better develop their processes.

Our study also found that successful documentation of disability and accommodation needs require:

  • Leadership support
  • Adequate training for staff and providers
  • Standardized workflow processes that facilitate proactive use of the information

We concluded that disability status information should be “front and center” in the EHR, along with other important demographic information. The EHR has the power to facilitate the efforts of health systems in documenting disability status and accommodation needs, leading to improved delivery of equitable care.

For more information about collecting disability status and accommodation needs, please visit the Dissabiity Equity Collaborative (DEC) and access its free Documenting Disability Status Starter Guide with evidence-based training resources for frontline staff.

The full study is available for free in a special 50th anniversary issue of JQPS.

Kori Eberle is a Research Assistant and Program Director for the Disability Equity Collaborative in the Adult and Child Center for Outcomes Research and Delivery Science at the University of Colorado Anschutz Medical Campus in Aurora, Colorado. Cristina Sarmiento, MD, is an Assistant Professor in the Department of Physical Medicine and Rehabilitation at the University of Colorado Anschutz Medical Campus. Megan A. Morris, PhD, MPH, CCC-SLP, is an Associate Professor of General Internal Medicine at the University of Colorado Anschutz Medical Campus.