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Discriminatory Provider Behaviors Contribute to Disabled People Delaying and Forgoing Medical Care

Posted on September 25, 2025

By Carli Friedman, CQL Director of Research, & Laura VanPuymbrouck, Rush University Associate Professor

Discrimination is a social determinant of health – a condition in the environments we live, work, learn, and play that impact our health and quality of life (United States Department of Health & Human Services, 2020; World Health Organization, 2010). As Burgess et al. (2008) puts it, “discrimination damages health” (p. 906). Experiencing discrimination directly impacts people’s physical and mental health outcomes (Burgess et al., 2008; Krieger, 2014; Pascoe & Smart Richman, 2009). People who experience discrimination in healthcare are less satisfied with their care and believe the care is lower quality (Benjamins & Whitman, 2014; Sorkin et al., 2010). Those that experience discrimination are also more likely to delay and forgo future medical care, which negatively impacts their physical and mental health and can lead to secondary conditions (Hall et al., 2019; Jaffee et al., 2016; McMaughan et al., 2023; Seelman et al., 2017).

Disabled people commonly delay and forgo needed medical care, ranging from preventative to specialist visits (Akobirshoev et al., 2022). In fact, in our previous study, we found during the second year of the pandemic (2021), disabled people were twice as likely to delay needed medical care than nondisabled people and three times more likely to forgo it altogether (Friedman & VanPuymbrouck, 2022). While disabled people face structural and environmental barriers while trying to access medical care, such as a lack of transportation and higher rates of poverty, so too can a lack of provider disability knowledge and inaccessible facilities contribute to unmet medical care needs (Akobirshoev et al., 2022; Hall et al., 2019).

Yet, less research has examined the relationship between disabled people experiencing discrimination and them delaying and forgoing medical care. In fact, there is a paucity of research about the impact of discrimination on disabled people’s health in general compared to other social minority groups (Pascoe & Smart Richman, 2009). For these reasons, the aim of this study was to examine the impact of disabled people experiencing discrimination in healthcare on their likelihood of delaying and forgoing medical care. To explore this, as part of a larger study (Friedman & VanPuymbrouck, in press), we conducted a national online survey about healthcare with 2,042 disabled people living in all 50 states and the District of Columbia, recruited through the National Institute of Health’s ResearchMatch platform (July-September 2023).

Results

There was a significant relationship between disabled people experiencing discrimination from health care providers and delaying and forgoing needed healthcare. Controlling for all sociodemographics, compared to ‘never’ experiencing discrimination from health care providers, ‘rarely’ experiencing discrimination from health care providers was associated with a 2.81 increase in the odds of disabled people delaying/forgoing healthcare, ‘sometimes’ experiencing discrimination a 7.31 increase in the odds of delaying/forgoing healthcare, ‘frequently’ experiencing discrimination a 17.64 increase in the odds of delaying/forgoing healthcare, and ‘always’ experiencing discrimination a 21.75 increase in the odds of delaying/forgoing healthcare.

The Relationship Between Experiencing Discrimination and Delaying/Forgoing Health Care

Relationship between discrimination from health care providers and disabled people delaying/forgoing needed healthcare. Never experiencing discrimination from health care providers: 1% always delay/forgo, 11% frequently delay/forgo, 26% sometimes delay forgo, 37% rarely delay/forgo, 25% never delay/forgo. Rarely experiencing discrimination from health care providers: 2% always delay/forgo, 23% frequently delay/forgo, 38% sometimes delay forgo, 30% rarely delay/forgo, 6% never delay/forgo. Sometimes experiencing discrimination from health care providers: 6% always delay/forgo, 46% frequently delay/forgo, 33% sometimes delay forgo, 12% rarely delay/forgo, 2% never delay/forgo. Frequently experiencing discrimination from health care providers: 14% always delay/forgo, 63% frequently delay/forgo, 17% sometimes delay forgo, 5% rarely delay/forgo, 1% never delay/forgo. Always experiencing discrimination from health care providers: 42% always delay/forgo, 29% frequently delay/forgo, 13% sometimes delay forgo, 13% rarely delay/forgo, 4% never delay/forgo.

There were also significant relationships between each of the patient-provider relationship factors and disabled people delaying and forgoing needed healthcare. Controlling for all sociodemographics, the odds of disabled people delaying/forgoing healthcare significantly increased when:

  • Health care providers focused on people’s disability and not the reasons for their healthcare visit;
  • Disabled people needed to advocate to get the care they needed;
  • Health care providers did not offer the accommodations disabled people needed;
  • Disabled people did not advocate for the care they needed during a healthcare visit where their needs were not met because they were overwhelmed;
  • Health care providers made disabled people feel like a burden to them;
  • Health care providers did not listen to disabled people; and
  • Disabled people did not feel they could trust their health care providers.

Discussion

For disabled people, access to quality healthcare is a vital priority. Yet, in our study, we found that experiencing discrimination from health care providers significantly increased the odds of disabled people delaying and forgoing healthcare. The impact of discrimination on disabled people delaying and forgoing medical care likely has a ripple effect, with a widespread impact exacerbating current physical and mental health issues, and creating new ones (Abramson et al., 2015).

Recent research highlights mechanisms for how discrimination in healthcare encounters negatively impacts disabled peoples’ mental and physical health. Disabled participants of a study exploring the need to self-advocate in order to receive equitable care described how both subtle and overt discrimination have lasting impact in their health (VanPuymbrouck & Magasi, 2024). Participants detailed how postponed healthcare visits due to past experiences of provider discrimination delayed vital treatments resulting in worsened physical health. Repeated microaggressions experienced as part of everyday normalization of disability discrimination were described by participants as contributing to poorer mental health.

In addition to discrimination from health care providers, there were several provider behaviors, many steeped in ableism, and patient-provider relationship factors that lead to increased likelihood of disabled people delaying and forgoing medical care. While our findings indicate the negative impact these behaviors and relationships can have on disabled people’s health behaviors, we believe they also represent opportunities for improvement, which by virtue of strengthen relationships and more inclusive healthcare cultures, will not only improve care quality, but also result in fewer unmet healthcare needs among disabled people.

For example, when disabled people in our study did not feel they could trust their health care providers, their odds of delaying and forgoing medical care increased significantly. Trust is a key part of patient-provider relationships, especially for social minorities (Jaffee et al., 2016; Murray & McCrone, 2015). When patients do not trust providers, they are less satisfied with care, are less likely to adhere to teatment regiments, and underuse future health services (Law et al., 2019; Murray & McCrone, 2015). Providers must remember that the power inequities they hold over patients can make trust fragile (Murray & McCrone, 2015).

Successful patient-provider relationships also necessitate communication, including listening to disabled people, rather than an exclusively top-down relationship. In fact, our findings suggest, the simple act of listening to disabled people will significantly increase the probability of disabled people not delaying or forgoing the care they need. Negative communication experiences, including discriminatory ones, make people feel disrespected, dismissed, powerless, and dehumanized, and leads to them not disclosing health information (Rocque & Leanza, 2015). On the flip side, better communication from providers results in stronger patient-provider relationships, higher quality care, more patient adherence, and less healthcare avoidance (Rocque & Leanza, 2015). Core components of successful communication, which must be attended to, include listening, as well as empathy, mutual respect, avoiding jargon, and shared decision-making (McClintock et al., 2018; Rocque & Leanza, 2015).

Similarly, disabled people describe that provider lack of knowledge, lack of respect, and failure to accommodate results in the frequent need to educate and advocate to receive equitable care (McClintock et al., 2018; VanPuymbrouck & Magasi, 2024). These common experiences can overwhelm disabled people, make them feel as if they are a burden, and create advocacy fatigue – “increased strain on emotional, physical, material, social, and wellness resources that come from continued exposure to system inequities and inequalities” (Basas, 2015, p. 39). In fact, when providers over medicalize and diagnostically overshadow – focusing on impairment, rather than the reasons for a healthcare visit – they provide lower quality care (Javaid et al., 2019; Nash, 2013).

VanPuymbrouck and Magasi (2024) define normalization of disability discrimination (NODD) as “everyday clinical policy or provider practices that exclude, marginalize, degrade, disrespect, and put disabled people at risk for inadequate or incompetent care” (p. 4) and a familiar experience shared by disabled people across healthcare contexts. NODD likely contributes to the failure of health care providers to understand disability but also prohibits acquiring knowledge on how to deliver equitable care versus medicalizing or diagnostic overshadowing of disabled people (Nash, 2013). NODD is the status quo reproduced across contexts and providers and requires disabled people to advocate. One method for reducing NODD is through provider (re)education. Research finds when health provider education includes the needs of disabled people and how to create accessible and equitable care experiences there is higher patient satisfaction, better quality care, and better health outcomes (Rocque & Leanza, 2015). As part of this education there must be a recognition that accommodations are not only a civil right, legally required in healthcare settings, but also that a lack of accommodations hinders healthcare quality and outcomes (Francis & Silvers, 2008). Discrimination in healthcare directly and indirectly produces inequities in disabled people’s health.

Conclusions

Health care providers’ duty of care means not creating situations in which people forgo needed care and, thus, suffer negative health impacts as a result. Our findings suggest that when providers discriminate, do not offer accommodations, make disabled people feel like burdens, and diagnostically overshadow, disabled people are significantly more likely to delay and forgo future care. When people delay or forgo medical care their physical and mental health is affected immensely (Hall et al., 2019; McMaughan et al., 2023; Seelman et al., 2017). As such, not being discriminatory should be seen as a component of duty of care of all health care providers.

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