Documenting Disability Status in Electronic Health Records

Approximately 1 in 4 Americans lives with a disability, equating to approximately 67 million Americans.1,2 The population of persons with disabilities includes a wide variety of disabilities, including those with mobility, communication, hearing, cognitive, visual and mental health disabilities. Disabilities can be acquired at any point of a person’s life or can present in early childhood.

A growing body of literature finds that people with disabilities experience disparities in health and health care outcomes. For example, compared to non-disabled people, people with disabilities are more likely to have a greater number of chronic conditions, and have higher rates of asthma, hypertension, emphysema, cardiovascular disease, diabetes and arthritis.3 People with disabilities are more likely to rate the quality of their health as fair or poor.4,5

While multiple factors contribute to poor health outcomes, inadequate access to high-quality, equitable health care is one of the major barriers.6 People with disabilities are more likely to report difficulty finding a clinician.3 When they do access care, they report low satisfaction with the quality of care and communication they receive.3,7Persistent disparities in cancer screenings, such as Pap tests8 and mammography exist.9,10 A significantly larger percentage of people with disabilities have at least one hospitalization and emergency department visit within a year as compared to people without disabilities.3 People with disabilities have a greater odds of hospital readmissions and are more likely to experience an adverse medical event in the hospital.11,12 To begin to address these disparities and improve patient outcomes, healthcare organizations need to systematically collect patients’ disability status.13

Documentation of disability status is necessary for addressing disparities and improving care
In order for clinics and organizations to identify and address potential disparities in care experienced by people with disabilities, patients’ disability status needs to be systematically and accurately documented. First, documentation of disability status is necessary in order to identify where the disparities exist and the extent of the disparities. Documentation of disability status is then necessary for designing and measuring the effects of initiatives and efforts to improve care delivered to patients with disabilities. Finally, the information can be used to identify people who are at risk for disparate impacts of social determinants of health.

Documenting patients’ disability status assists with provision of disability accommodations
According to several federal laws, health care organizations and clinics are required to provide patients with disabilities equitable health care. This includes the provision of disability accommodations, auxiliary aids, and services. To provide these resources to patients who require them, health care organizations first need to ask patients if they have a disability (collect disability status) and if so, whether the patient requires health care accommodations.14 Example accommodations include but are not limited to: ASL interpreter, extended appointment times, transfer assistance to the exam table, sound amplifiers, readers and note takers, etc.

Multiple federal laws require health care organizations to provide accessible and equitable health care services to persons with disabilities. The following is a quick snapshot of some of these requirements.

• The Rehabilitation Act of 1973, Section 50415
  • Prohibits discrimination against people on the basis of disability
  • Applicable to all programs and activities that receive federal funding from the United States Department of Health and Human Services (HHS) or are conducted by HHS
• Americans with Disabilities Act (ADA) of 199016
  • Created federal civil rights protections that prohibit discrimination against people with disabilities
  • The ADA applies to any organization that provides services to the public, which includes all healthcare services
  • The ADA states that health care organizations must provide full and equal access to people with disabilities
• Affordable Care Act (ACA) of 2010, Section 155717
  • Prohibits discrimination on the basis of race, color, national origin, age, disability, or sex by health programs and activities covered by the ACA
  • Requires covered entities to provide appropriate auxiliary aids and services, such as alternative formats and sign language interpreters, where necessary for effective communication

In addition to these federal laws, states may have laws and statutes requiring the provision of accessible care.

First, it is important to note that it is not illegal to ask patients about their disability status.

• Section 4302 of the ACA requires the collection of disability status by organizations that receive federal funding.18 The intent of this statute is to identify and address health and health care disparities. This has been mainly applied to national surveys. Some have interpreted this statute to apply to health care organizations as well.
• In several cases in which health systems were found to not be accessible to patients with disabilities, the Department of Justice stated that health care organizations need to collect disability status in order to identify patients who require health care accommodations.19
• In July 2022, the Office for the National Coordinator for Health Information Technology released Version 3 of their interoperability standards. Included in this is the documentation of patients’ disability status.20

Disability is a patient-reported demographic characteristic like race, ethnicity, preferred language, gender identity, sexual orientation, etc. For some people with disabilities, disability is a part of their identity, just like their race, ethnicity, sexual orientation, or gender identity. Any processes for documenting other patient demographics could incorporate documentation of disability status. Additionally, disability status should be displayed in the electronic health record (EHR) in the same location as other demographic characteristics.

Like other demographic information, disability status must be patient-reported.  Disability status is different from a clinical assessment that is used to inform care provision. As such, there is not a reliable method to use clinical charts and diagnosis codes to determine a patient’s disability status.21,22 Additionally, disability status should not be obtained through insurance status or disability benefits. Benefits assessment is a separate evaluation process and cannot be combined with collection of patients’ disability status.

• American Community Survey (ACS) Disability Questions: Following the passage of Section 4302 of the ACA, HHS recommended the use of the ACS Disability Questions.23 The original intent of the questions was to provide population-level prevalence estimates of disability in the United States.
  • Benefits of using these questions:
    1. These are standard questions in disability population surveys in the United States. This allows for interoperability of the data across the health care system and population surveys.
    2. The questions are endorsed by HHS.
  • Potential drawbacks:
    1. The questions have only been tested in the United States.
    2. There is no communication disability question.
    3. Several of the questions have long preambles, which might make implementation more challenging.
    4. The “doing errands” question does not assist in identifying patients who require health care accommodations. It is hard to conceptualize what disabilities these patients might represent.
    5. The questions differ slightly from the Washington Group questions which does not allow for interoperability and sharing of the data between health care systems and public health data.
    6. These questions have not been tested in a health care setting.
    7. The questions are not inclusive of all disability types.

• Washington Group: The United Nations Washington Group on Disability Statistics developed a set of 6 disability status questions. The original intent of the questions was to provide population-level prevalence estimates of disability throughout the world. As such, these questions have been implemented in countries all over the world.24
  • Benefits of using these questions:
    1. The questions have been internationally tested and implemented with linguistically and culturally diverse groups.
    2. The questions include a communication disability question.
    3. Several of the question wordings are more concise than the ACS questions.
  • Potential drawbacks:
    1. The questions differ slightly from the ACS questions which does not allow for interoperability and sharing of the data between health care systems and public health data.
    2. The questions have not been tested in the health care setting.
    3. The questions are not inclusive of all disability types.

• Patient-Centered Disability Questionnaire: Our study team embarked on a series of studies to identify disability status questions to be used in health care organizations for the purposes of identifying patients who require disability accommodations and tracking quality of care at an organization-level.25 These studies included a survey, qualitative focus groups and interviews, a national Delphi panel and cognitive interviews.
  • Benefits of using these questions:
    1. The questions incorporate both the ACS and the Washington Group questions.
    2. The questions have been tested in the health care setting.26
    3. The questions include a communication disability question.

• • Potential drawbacks:
    1. Since the questions are not identical to either the ACS or Washington Group questions, it is not possible to compare the full disability question set to public health data gathered using either of the two other sets of questions.
    2. The questions are not inclusive of all disability types.

Currently, regardless of which set of questions is used, the recommendations are to ask all 6 questions listed in the table above. Using the Patient-Centered Disability Questionnaire, our study team tested asking one screener question versus all 6 disability questions.26 In the case of the screener question, if a patient answered the question affirmatively, then the staff was instructed to ask the full set of 6 questions. We found that staff were more likely to ask the screener question than the full set of 6 questions. We found no difference in the percentage of those who reported a disability between asking only the screener question or the full set. Despite these findings, we highly recommend more research in this area.

Some patients might have non-apparent disabilities and so it is important that all patients are asked about their disability status.

Yes. All of the questions are already coded and included in the latest version of LOINC. See Appendix A for a list of the LOINC codes.

This will depend on your EHR vendor and whether your organization has opted to have these questions available. It is possible that you will need to build these questions into your EHR. Efforts are underway to develop EHR tools and support for the disability questions. Please email Dr. Megan Morris (megan.a.morris@cuanschutz.edu) for additional information.

It is important to ask about disability status and accommodation needs. Not all persons with disabilities will require accommodations. Conversely, not all persons who have accommodation needs will self-identify as having a disability. As with other demographic characteristics that are routinely collected, it is important to track who has a disability in order to ensure you are providing equitable care to all patients with disabilities.

Health care organizations are required to provide accommodations to caregivers who have disabilities. For example, if a caregiver is Deaf and their primary language is American Sign Language, health care organizations must provide an ASL interpreter for the caregiver. As such, you should collect disability status and accommodation needs from caregivers as well and store it in the patient’s medical chart.

There are no specific standards for how disability status and accommodation needs should be collected. How it is collected will be likely influenced by the setting in which the information is collected. It should be noted again, that the questions need to be patient-reported. Collection should occur in the emergency department, outpatient, and inpatient settings, as well as telehealth and home care. It is recommended to have multiple options and settings in which disability status and accommodation needs are asked. Having multiple points will allow patients to disclose in the setting they are most comfortable. One option is to have patients input their disability status and accommodation needs via the patient portal. It is important to note that this requires that the patient portal also be accessible, including usable for patients with low vision who use a screen reader.

Disability status and accommodation needs should be collected either prior to or at the beginning of a patient’s appointment. This will allow you to identify their accommodation needs and provide the accommodations at the time of the appointment.

Generally, the agreed upon timeframe is every 6-12 months, though no concrete standard exists. Patients with either progressing conditions such as Parkinson’s Disease, or patients who are recovering from an injury might need to be asked about their disability status and accommodation needs more frequently.

The time it takes to inquire about disability status depends on the method used. In a study we conducted, we trained registration staff to ask disability status questions as part of the new patient registration process. The main performance metric for these staff was the length of calls. Consequently, time to ask the questions was important to leadership. During the study time frame, the disability status questions were asked approximately 1,682 times during recorded calls.  Asking the full set of 6 disability status questions lengthened the call time by an average of 62 seconds.  Asking a screener question then the full set of questions lengthened the call time by an average of 18 seconds. Other methods such as collecting disability status through intake forms or the patient portal are likely more time efficient collection methods for staff.

Disability status and accommodation needs should be prominently displayed in a patient’s medical record. Typical locations include the top or sidebar of the patient’s medical record. The information should be located in a similar place as the patient’s primary language, age, gender identity, allergies, etc.

Anyone who will be interacting with the patient in-person, virtually, over the phone, or by mail should be able to view the patient’s disability status. This could include staff in the following areas:

• Billing
• Risk Management/Claims
• Patient Experience
• Patient Safety
• Quality Improvement
• Health Equity
• Scheduling
• Interpretation
• Clinical teams

In research we have conducted, including a survey of patients with and without disabilities, participants report a high level of comfort with healthcare systems collecting the information.27 In another study in which we implemented collection of disability status for >3,000 patients, we had no patient complaints about collection of patients’ disability status.26 When we conducted follow-up interviews with patients who completed the questions, they reported not even remembering that they were asked the questions. Additionally, they reported that they expected their health care organization to collect disability status, as disability information was less sensitive than other information that is routinely collected by their health care team.

To be prepared to address patients’ concerns, we recommend providing a short prompt prior to the disability questions in case the patient questions why the questions are being asked. (See Appendix B for an example prompt). Additionally, we suggest preparing staff with a list of answers to common questions the patient might ask. (See Appendix C for example questions and responses).

It is always possible that a staff member will identify that a patient has a disability and then treat the patient differently. However, we believe the benefits greatly outweigh the risks. Patients with disabilities already report being treated differently and being discriminated against in health care settings. We cannot begin to address this discrimination until we collect patients’ disability status. Collection of disability status allows organizations to measure the extent of the problems and to develop and implement interventions to ameliorate the disparities. Additionally, the health care system has collected demographic characteristics such as race and ethnicity from patients for decades, without an increase in discrimination.

Since the questions are patient-reported, it is completely within a patient’s right to refuse to answer the questions. Even if you suspect a patient has a disability, only record what the patient reports.

Because this is not a clinical assessment, the staff asking the disability questions do not need any specialized clinical training. Staff should be trained on how to ask the questions and why the disability status questions are asked. Additionally, we suggest some basic disability etiquette so that staff know how to talk about disabilities in a patient-centered and respectful manner. See Appendix D for example trainings and training materials.

You will not know what accommodations you need to have available in your clinic or hospital if you do not begin to ask patients about their disability and accommodation needs. Therefore, asking about disability status and accommodation needs is the first step in your organization’s journey to providing equitable care. In qualitative work that we have conducted, patients with disabilities reported that they understood that an organization might not have an accommodation immediately available. They believed it was important to ask about their disability status anyway. Included in the Appendix B is a scripted response that staff can utilize to if they are unsure about the ability to offer an accommodation that is requested.

Leadership support is critical to success. Documenting patients’ disability status and providing disability accommodations touches almost all units and departments within a health care organization, so it is important to engage leadership across departments. Examples of departments include but are not limited to: registration, scheduling, billing, IT, patient experience, emergency departments, and inpatient and outpatient clinics. Some organizations have convened cross-department committees on the topic to facilitate communication and to gain wide-spread support. Once you have leadership support and buy-in, you will need to work with your IT team to identify where disability status will exist in your EHR, what disability and accommodation options and questions you will include, and what additional functionalities you would like built into and connected to disability status. Finally, you would need to determine the workflow processes to integrate routine and systematic documentation into your routine operations. Again, this will likely require multiple stakeholders in your organization working together.

When building the disability status and accommodation fields within your EHR, consider adding a timestamp of when the field is completed, the source and method used to collect disability status, and who completed the field. Since a person’s disability status could change over time, having the historical record of their disability status is important. For the accommodation fields, consider building in the ability to document when an accommodation was provided and used, as well as if a patient declined an accommodation. Finally, consider what additional functionalities you would like to build into the fields. For example, if a patient has a documented visual disability and need large print materials, their After-Visit Summaries could automatically print in large print. Or, if a patient has a documented mobility disability, the scheduling application will automatically schedule the patient in an examination room with a height adjustable examination table. Organizations have also found it helpful to be able to generate reports of upcoming accommodation needs by clinic.

Disability status information can be used in any quality improvement work you conduct in your organization, such as stratifying patient process and outcome measures, patient experience, access to care, etc. by disability status. For example, if you have a project on Social Determinants of Health, you could use collected disability status to identify if there are certain disability groups that are at risk for the disparate impact of social determinants of health.

Additionally, be prepared if your state or local public health department might request that the information about patients’ disability status be shared. For example, they could request COVID-19 cases, deaths, and immunizations by disability status. For patients with an identified disability accommodation need, workflow processes need to be established to ensure that accommodations are provided in a timely and efficient manner. Finally, some organizations have stated that they use reports of the accommodation needs field to assist with planning for purchasing accessible equipment and other accommodations.

The Disability Equity Collaborative (https://www.disabilityequitycollaborative.org/) has learning communities for health care organizations and clinics on providing equitable healthcare to patients with disabilities. Additionally, we host a library of resources, publish a quarterly newsletter, and convene multiple workgroups. Contact us for more information or to get connected.

Below is a list of references of existing research on the topic of documenting patients disability status and accommodation needs:

• Morris MA, Schliep M, Liesinger J, Cameron KA. Collection of Patients’ Disability Status by Healthcare Organizations: Patients’ Perceptions and Attitudes. J Healthc Qual. Jul/Aug 2017;39(4):219-229. doi:10.1097/jhq.0000000000000036
• Morris MA, Lagu T, Maragh-Bass A, Liesinger J, Griffin JM. Development of Patient-Centered Disability Status Questions to Address Equity in Care. Joint Commission journal on quality and patient safety. Dec 2017;43(12):642-650. doi:10.1016/j.jcjq.2017.06.011
• Pinto AD, Shenfeld E, Lattanzio R, et al. Routine identification of patients with disabilities in primary care: A mixed-methods study. Disabil Health J. Apr 2020;13(2):100872. doi:10.1016/j.dhjo.2019.100872
• Mudrick NR, Breslin ML, Nielsen KA, Swager LC. Can disability accommodation needs stored in electronic health records help providers prepare for patient visits? A qualitative study. BMC Health Serv Res. Oct 16 2020;20(1):958. doi:10.1186/s12913-020-05808-z
• Morris MA, Hamer MK, Eberle K, Jensen KM, Wong AA. Implementation of Collection of Patients’ Disability Status by Centralized Scheduling. Joint Commission journal on quality and patient safety. Oct 2021;47(10):627-636. doi:10.1016/j.jcjq.2021.05.007
• Varadaraj V, Guo X, Reed NS, et al. Identifying Accessibility Requests for Patients With Disabilities Through an Electronic Health Record-Based Questionnaire. JAMA network open. Apr 1 2022;5(4):e226555. doi:10.1001/jamanetworkopen.2022.6555

1. Centers for Disease Control and Prevention. Disability Impacts All of Us. Accessed September 27th, 2020. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html
2. Varadaraj V, Deal JA, Campanile J, Reed NS, Swenor BK. National Prevalence of Disability and Disability Types Among Adults in the US, 2019. JAMA network open. 2021;4(10):e2130358-e2130358. doi:10.1001/jamanetworkopen.2021.30358
3. Stransky M, Jensen K, Morris MA. Adults with Communication Disabilities Experience Poorer Health and Healthcare Outcomes Compared to People without Communication Disabilities. Journal of General Internal Medicine. 2018;33(12):2147-2155. doi:doi: 10.1007/s11606-018-4625-1
4. Havercamp SM, Scandlin D, Roth M. Health disparities among adults with developmental disabilities, adults with other disabilities, and adults not reporting disability in North Carolina. Public Health Report. Jul-Aug 2004;119(4):418-26.
5. Altman B, Bernstein A. Disability and health in the United States, 2001-2005. 2008.
6. Office of Disease Prevention and Health Promotion. Healthy People 2020 Disability and Health. Accessed March 28, 2020. https://www.healthypeople.gov/2020/topics-objectives/topic/disability-and-health/objectives
7. Hoffman JM, Yorkston KM, Shumway-Cook A, Ciol MA, Dudgeon BJ, Chan L. Effect of communication disability on satisfaction with health care: a survey of medicare beneficiaries. American Journal Speech Language Pathology Aug 2005;14(3):221-8. doi:10.1044/1058-0360(2005/022) [doi]
8. Iezzoni LI, Kurtz SG, Rao SR. Trends in Pap Testing Over Time for Women With and Without Chronic Disability. American journal of preventive medicine. Feb 2016;50(2):210-9. doi:10.1016/j.amepre.2015.06.031
9. Iezzoni LI, Kurtz SG, Rao SR. Trends in mammography over time for women with and without chronic disability. Journal of women’s health (2002). Jul 2015;24(7):593-601. doi:10.1089/jwh.2014.5181
10. Iezzoni LI, Kurtz SG, Rao SR. Trends in colorectal cancer screening over time for persons with and without chronic disability. Disabil Health J. Jul 2016;9(3):498-509. doi:10.1016/j.dhjo.2016.02.003
11. Bartlett G, Blais R, Tamblyn R, Clermont RJ, MacGibbon B. Impact of patient communication problems on the risk of preventable adverse events in acute care settings. CMAJ. Jun 3 2008;178(12):1555-62. doi:10.1503/cmaj.070690
12. Chang JE, Weinstein B, Chodosh J, Blustein J. Hospital Readmission Risk for Patients with Self-Reported Hearing Loss and Communication Trouble. Journal of the American Geriatrics Society. Nov 2018;66(11):2227-2228. doi:10.1111/jgs.15545
13. Morris MA, Hasnain-Wynia R. A Research Agenda for Documenting Disability Status within Healthcare Organizations to Address Disparities in Care. J Healthc Qual. Mar 2014;36(2):7-13. doi:10.1111/jhq.12059
14. Mudrick NR, Breslin ML, Nielsen KA, Swager LC. Can disability accommodation needs stored in electronic health records help providers prepare for patient visits? A qualitative study. BMC Health Serv Res. Oct 16 2020;20(1):958. doi:10.1186/s12913-020-05808-z
15. U.S. Department of Health and Human Services. Your Rights Under Section 504 of the Rehabilitation Act. Accessed March 1, 2013.
16. Americans with Disabilities Act of 1990, As Amended. Accessed May 1st, 2013. http://www.ada.gov/pubs/adastatute08.htm
17. Nondiscrimination in Health Programs and Activities. Proposed Rule. Federal register. August 4 2022; https://www.federalregister.gov/documents/2022/08/04/2022-16217/nondiscrimination-in-health-programs-and-activities.
18. U.S. Department of Health and Human Services. Final Data Collection Standards for Race, Ethnicity, Primary Language, Sex, and Disability Status Required by Section 4302 of the Affordable Care Act Accessed November 15th, 2011. https://aspe.hhs.gov/reports/hhs-implementation-guidance-data-collection-standards-race-ethnicity-sex-primary-language-disability-0
19. United States Department of Justice Civil Rights Division. Barrier-Free Health Care Initiative. Accessed May 15th, 2021. https://www.ada.gov/usao-agreements.htm
20. Office of the National Coordinator for Health Information Technology. United States Core Data for Interoperability Version 3. Accessed July 29, 2022. https://www.healthit.gov/isa/sites/isa/files/2022-07/USCDI-Version-3-July-2022-Final.pdf
21. Morris MA, Kho AN. Silence in the EHR: infrequent documentation of aphonia in the electronic health record. BMC Health Serv Res. 2014;14:425. doi:10.1186/1472-6963-14-425
22. Halpin CF, Iezzoni LI, Rauch S. Medical record documentation of patients’ hearing loss by physicians. J Gen Intern Med. Apr 2009;24(4):517-9. doi:10.1007/s11606-009-0911-2
23. U.S. Department of Health and Human Services. U.S Department of Health and Human Services Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status. Accessed September 27th, 2015. http://aspe.hhs.gov/datacncl/standards/aca/4302/index.shtml
24. Washington Group on Disability Statistics. Accessed May 15th, 2021. https://www.washingtongroup-disability.com/
25. Morris MA, Lagu T, Maragh-Bass A, Liesinger J, Griffin JM. Development of Patient-Centered Disability Status Questions to Address Equity in Care. Joint Commission journal on quality and patient safety. Dec 2017;43(12):642-650. doi:10.1016/j.jcjq.2017.06.011
26. Morris MA, Hamer MK, Eberle K, Jensen KM, Wong AA. Implementation of Collection of Patients’ Disability Status by Centralized Scheduling. Joint Commission journal on quality and patient safety. Oct 2021;47(10):627-636. doi:10.1016/j.jcjq.2021.05.007
27. Morris MA, Schliep M, Liesinger J, Cameron KA. Collection of Patients’ Disability Status by Healthcare Organizations: Patients’ Perceptions and Attitudes. J Healthc Qual. Jul/Aug 2017;39(4):219-229. doi:10.1097/jhq.0000000000000036

Appendix A: LOINC Codes

Appendix B: Example Prompt and Disability Questions

Appendix C: Collecting Disability Status FAQs for Clinics

Appendix D: Collecting Patients’ Disability Status Training Slide Deck & Table Tent

Appendix E: 1-Page Overview: Documenting Patients’ Disability Status in the Electronic Health Record