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Documenting Disability Status to Build the Foundation for Equitable Care


By Megan A. Morris, PhD, MPH, CCC-SLP, and Kori Eberle, BA

For the 25% of adults in the United States who live with a disability, accessing high-quality health care can be challenging. Multiple studies have demonstrated through population-level surveys that patients with disabilities experience significant health and health care disparities. While this information is critical and illuminating, to begin to understand the causes of the disparities as well as develop potential interventions, organization-level data are needed. Unfortunately, patients’ disability status is rarely collected by health care organizations and clinics.  

Collection of disability status at the organization-level and recording the information in the electronic health record (EHR) is essential for two reasons: 

  1. Identifying patients who experience disparities. Information on who is experiencing disparities is critical for planning and implementing quality improvement (QI) initiatives to address gaps in quality and safety for patients with disabilities.  
  2. Identifying patients who require disability accommodations. According to the Americans with Disabilities Act (ADA) and the Patient Protection and Affordable Care Act, all health care organizations are required to provide reasonable and timely accommodations to patients with disabilities. Without asking patients if they have a disability and recording their disclosures in a central location in the EHR, it is impossible to identify patients who require accommodations or provide the accommodations in a timely manner.

Implementation of Collection of Patients’ Disability Status
In 2019, UCHealth in Colorado implemented collection of patients’ disability status during new patient registration within a centralized call center serving 53 primary care clinics. Our efforts are detailed in the study, “Implementation of Collection of Patients’ Disability Status by Centralized Scheduling,” from the October issue of The Joint Commission Journal on Quality and Patient Safety

We provided a 30-minute live and web-based educational module to the scheduling agents on how to collect disability status, as well as associated resources including answers to frequently asked questions and tools for using patient-centered language with people with disabilities. 

The disability questions were integrated into the demographics section of the EHR and built into the registration form with a yield sign that alerted the agents to ask the questions. The disability questions inquired about the following disabilities:

  • mobility
  • hearing 
  • cognition
  • communication
  • manual dexterity
  • vision
  • general disability question

Across our 6-week data collection period, 3,673 new patients were registered at one of the 53 primary care clinics. Key findings included:

Documentation significantly increased, but gaps remain.

  • Documentation of disability status in the EHR increased from <10% to 54%, which was maintained for eight weeks after the study.
  • Documentation of disability status increased the length of calls by 18 seconds. Since the main performance metric for the call centers was efficiency, it was not feasible to implement collection of disability status for all returning patients.
  • It is likely a multi-prong approach, including patient portals, is needed to systematically collect patients’ disability status.

Patients are comfortable with being asked disability status questions.

  • During the data collection period, there were zero patient complaints about collection of disability status. 
  •  No patient refused to answer the questions.
  • When we interviewed patients who answered the questions, many forgot that they were even asked the questions.

Training makes a difference.

  • Agents who attended a live educational session were more likely to record the patients’ disability status.
  • While the agents said that the educational training was valuable, many still expressed discomfort over the questions. This likely would improve with additional time and experience.

A screener question might be sufficient.

  • We tested both a screener disability question and the full set of seven disability questions. We found that the reported number of disabilities was similar with each condition.
  • The agents reported more comfort with asking the screener question than automatically asking the full set of questions.

As with other demographic information, documenting disability status is fundamental to advancing equitable health care. Our study demonstrated the feasibility of documenting disability status in the EHR. We hope that other organizations are able to use our findings to implement collection of disability status within their own EHR.  

The educational module developed for this study, as well as links to other resources for implementing disability accommodations and equitable health care for people with disabilities are available at http://disabilityequitycollaborative.org. The Disability Equity Collaborative provides evidence-based knowledge and practical solutions and tools to address the complex problems in disability access in health care. 

Megan A. Morris, PhD, MPH, is Associate Professor, and Investigator, Adult and Child Consortium for Health Outcomes and Delivery Science (ACCORDS), Division of General Internal Medicine, School of Medicine, at the University of Colorado Anschutz Medical Campus in Aurora, Colorado. Dr. Morris is a qualitative and mixed methods researcher with content expertise in disparities in care experienced by persons with disabilities. 

Kori Eberle, BA, is a Professional Research Assistant at ACCORDS. Ms. Eberle’s research focuses on health care disparities in disability populations.