Creating an Inclusive Culture for Patients Who Have Disabilities
Laura M. Cascella, MA, CPHRM
Providing inclusive and culturally competent care is an essential strategy for engaging patients, improving adherence to treatment, and helping address issues related to bias and health disparities. Often, discussions about culturally competent care focus on individuals who are racial or ethnic minorities or who identify with the LGBTQ+ community. Yet, another special and diverse population often is overlooked — people who have disabilities.
Recently, however, a small but widely publicized study in Health Affairs showed that people who have disabilities face numerous barriers in accessing and finding appropriate healthcare services.1 In some instances, the barriers are physical, such as inaccessible office spaces and lack of appropriate equipment. For example, some of the physicians interviewed for the study reported sending patients who use wheelchairs to supermarkets, grain elevators, zoos, or cattle processing plants to obtain their weight.
In other instances, the barriers are due to inadequate communication, knowledge deficits, or biased attitudes toward these patients. For example, some of the study’s physician participants noted that patients who have disabilities create a burden on their already busy practices or that these patients feel “entitled” to special accommodations. 2
This study suggests that, although healthcare providers cannot legally discriminate against patients who have disabilities — per the Americans with Disabilities Act of 1990 (ADA) — discrimination may still occur and can be difficult for patients to overcome. As a result, these patients might not receive vital care, and health disparities may continue to perpetuate as a result.
Structural barriers to care that were noted in the study — e.g., time limitations, documentation burdens, care coordination, reimbursement issues, etc. — will require interventions at many levels to help healthcare providers meet the unique needs of patients who have disabilities. However, healthcare providers can take steps to proactively address other barriers and build inclusive cultures that support these patients. Strategies to consider include the following:
- Seek training and education on the ADA to better understand its implications for patient care and your responsibilities under the law. “As a piece of civil rights legislation, the ADA includes both public-sector services (Title II) and private services available to the public (Title III) and is not discretionary."3
- Ask patients about any accommodations they might require when they schedule their appointments. One of the structural barriers to care noted in the Health Affairs study was lack of awareness that a patient requiring accommodations was scheduled for an appointment.
- Document in patients’ health records their disability status and any accommodations they need to help prepare for future visits and to ensure adequate support is in place.
- Discuss with patients the process of the exam and any important information they might need to know about preparing for their appointment. For patients who have mobility or visual disabilities, make them aware of the layout and accessibility features of the facility.
- Ask patients about their communication preferences and determine whether they need access to language services, interpreters, and/or assistive technologies. Healthcare practices that receive federal financial assistance and/or funding are generally responsible for providing auxiliary aids or other service accommodations at no cost to the patient. To learn more, see MedPro’s Risk Q&A: Interpreters & Auxiliary Aids.
- Determine whether your practice has the appropriate medical equipment (e.g., accessible exam tables, chairs, scales, and lifts) and staff training (e.g., safe patient handling and transfer) to provide care for patients who have mobility disabilities. Look into whether tax credits or special programs are available to help purchase equipment or renovate spaces for improved accessibility.
- Be aware of how patients’ disabilities might affect their needs both in the practice and beyond. For example, patients who have visual impairments might require forms and patient education materials in large type, Braille, or an audio format.
- Make an effort to view every patient as a unique individual, and be aware that the population of people who have disabilities is diverse. Narrowly focusing on a patient’s disability can result in stereotyping and depersonalization.
- Learn about and use language that is considered disability culturally competent, such as first-person wording (e.g., “people who have disabilities” rather than “disabled people” or “people who have schizophrenia” rather than “schizophrenics”).
- Avoid terms that are considered archaic, unacceptable, or insulting (e.g., abnormal, mentally retarded, crippled, handicapped, senile, etc.), and educate others in your organization about the implications of using these terms. For more information, see the Centers for Disease Control and Prevention’s Communicating With and About People with Disabilities webpage.
- Work with patients who have disabilities to understand their preferred terminology, and remember that preferences may differ among individuals. “The most essential guideline for disability language is to use whatever words each individual disabled person prefers."4
- Whenever possible, speak directly to patients and engage them in discussions and decisions about their healthcare. Bypassing patients and communicating directly with caregivers can further reinforce negative stereotypes about patients who have disabilities and alienate them from taking active roles in their care.
- Learn about methods that can help facilitate communication with people who have intellectual disabilities or serious mental illnesses and support them in making decisions about their care. “A patient’s right of self-determination makes it critical to communicate with the patient and not assume that physicians can perform procedures without proper communication and informed consent."5
- Ask patients about what they perceive as barriers to their care and what works best for them in the care setting. Request that they provide feedback on how the practice can do better in the future. Review any feedback with staff to determine strategies for further improving cultural competence.
- Consider how various technologies can assist patients who have disabilities. For example, telehealth visits might increase access to care for patients who have mobility issues. Audio recordings, video recordings, closed captioning, texting, and website accessibility also can help patients access and understand important health information.6
These strategies are not all-inclusive; however, they offer provider-level interventions that can support a framework for building a culturally competent healthcare environment. Although much work remains in addressing health disparities for patients who have disabilities, taking proactive steps to build an inclusive culture can help improve access to and quality of care for this patient population. To learn more about cultural competence for a range of special populations, see MedPro’s Risk Resources: Health Literacy and Cultural Competence.
Endnotes
1 Lagu, T., Haywood, C., Reimold, K., DeJong, C., Walker Sterling, R., & Iezzoni, L. I. (2022). ‘I am not the doctor for you’: Physicians’ attitudes about caring for people with disabilities. Health Affairs, 41(10), 1387–1395. doi: https://doi.org/10.1377/hlthaff.2022.00475
2 Ibid.
3 Ibid.
4 Pulrang, A. (2020, September 30). Here are some dos and don’ts of disability language. Forbes. Retrieved from www.forbes.com/sites/andrewpulrang/2020/09/30/here-are-some-dos-and-donts-of-disability-language/
5 Agaronnik, N., Campbell, E. G., Ressalam, J., & Iezzoni, L. I. (2019). Exploring issues relating to disability cultural competence among practicing physicians. Disability and Health Journal, 12(3), 403–410. doi: https://doi.org/10.1016/j.dhjo.2019.01.010
6 Lagu, et al., ‘I am no the doctor for you’: Physicians attitudes about caring for people with disabilities; Agaronnik, et al., Exploring issues relating to disability cultural competence among practicing physicians; National Public Radio. (2022, November 1). How some doctors discriminate against patients with disabilities. All Things Considered. Retrieved from www.npr.org/2022/11/01/1133375224/how-some-doctors-discriminate-against-patients-with-disabilities; Sunflower Health Plan. (2018). Cultural competency and disability awareness. Retrieved from www.sunflowerhealthplan.com/content/dam/centene/sunflower/pdfs/2019-Cultural-CompetencyR.pdf; California Health & Wellness. (2021). How to provide culturally competent care for patients with disabilities. Retrieved from www.cahealthwellness.com/content/dam/centene/cahealthwellness/pdfs/provider/Health-Equity-CL-Resources/CA-Cultural-Series-Disabilities-CHW-FINAL.pdf
