A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).

Prior research has shown that people with disabilities can face a multitude of challenges to full participation, including higher rates of unmet healthcare needs compared to those without disabilities. However, “people living with disabilities” defines a large and diverse group. They can differ in many ways such as socioeconomic status, race, type and number of disabilities, gender identity, etc. The challenges faced by individuals in these subgroups of people with disabilities may be different.

Among people with disabilities, some identify as transgender. Transgender means a person whose gender identity is different from the gender they were assigned at birth. Cisgender means a person whose gender identity is the same as what they were assigned at birth. People living with disabilities who are also transgender may face the compounding effects of these challenges in meeting their healthcare needs. Though some research has begun to explore the lived experiences of lesbian/gay/bisexual/transgender/intersex (LGBTI) people with disabilities, not much research has focused specifically on people with disabilities who are transgender and their unmet healthcare needs.

A recent NIDILRR-funded study sought to fill this gap in the research. Specifically, researchers set out to learn about the most common disabilities among transgender people with disabilities. The researchers wanted to know how the types and rates of disabilities differ between transgender and cisgender people with disabilities, and if there are differences in unmet healthcare needs based on gender identity in people with disabilities.

For this study, researchers from the Collaborative for Health Reform and Independent Living and the project on Using the National Survey on Health and Disability Panel to Document the COVID-19 Pandemic Experiences of Working-Age Americans with Disabilities used data from 2,175 participants in the National Survey on Health and Disability (NSHD) collected between October 2019-January 2020. All participants were 18-64 years old, lived in the US or a US territory, and reported at least one disability. As part of the survey, participants answered questions about their gender identity, main disability, and unmet healthcare needs. For gender identity, participants could select male, female, or other. Those who chose “other” could provide further information such as, transgender, non-binary, two-spirit, gender non-conforming, genderqueer, agender, intersex, or choose not to disclose. The majority identified as transgender or non-binary, and for the purposes of this analysis, the researchers considered those who selected “other” as transgender, and those who selected male or female as cisgender. For the disability category, participants chose the one category that they felt best described their main disability (i.e., intellectual or cognitive, mental illness or psychiatric, physical or mobility, chronic illness, sensory, developmental, or neurological). They could also indicate if they had more than one disability. For unmet healthcare needs, participants answered questions related to the ability to access a primary doctor, preventative services, dental services, specialist care, and prescription medications. The survey also collected demographic data, which included age, race, ethnicity, education level, health insurance, and income.

The researchers found that most of the participants were white, cisgender women living with multiple disabilities. Nearly all of the participants had health insurance. About half of the participants had at least a 4-year college education. The transgender group made up about 3% of the total number of participants. The researchers also found the following results:

• A higher percentage of the transgender participants (90%) reported multiple disabilities compared to the cisgender participants (50%).
• Transgender participants were more likely to experience unmet primary, dental, specialist, and prescription healthcare needs, compared to the cisgender participants. Transgender and cisgender participants were equally likely to experience unmet preventative healthcare needs.
• A higher percentage of transgender participants identified developmental disability as their main disability compared to the cisgender participants.
• A higher percentage of cisgender participants identified physical or mobility disability as their main disability compared to transgender participants.
• Even with health insurance, rates of unmet healthcare needs were higher for transgender participants compared to cisgender participants. Specifically:
  • The transgender participants were 4 times more likely to report the inability to see a doctor when needed, compared to cisgender participants.
  • The transgender participants were 3 times more likely to be unable to get a prescription or see a dentist when needed, compared to cisgender participants.
  • The transgender participants were nearly 3 times more likely to be unable to see a specialist when needed, compared to cisgender participants.

When reflecting on the results, the authors noted that the percentage of transgender participants reporting mental illness and psychiatric disabilities as their main disability was lower than that of prior studies of transgender people in the general population. They suggested that this may be related to the higher-than-average education and income levels of this study’s participants, which research shows are associated with fewer mental health issues potentially leading to more stability and higher quality of life. They suggested this may have resulted in mental illness not being reported as the main disability for many of the participants. The authors also noted that the transgender participants were nearly 3 times more likely to report at least 1 unmet healthcare need compared to the cisgender participants. They suggested that these unmet needs may reflect the compounding effect of identifying as transgender and having a disability. Specifically, they suggested that this unmet need may be related to a lack of physician education in caring for transgender people. They also suggested that transgender people may delay or avoid care due to prior negative experiences in the healthcare system.

The authors acknowledged that the number of transgender participants in the study was small, mostly white, and not adequately representative of the general population. They recommended that additional research should be done to capture data more representative of the general population. However, this study may offer an important step toward in increasing awareness of the importance of considering gender identity of people with disabilities in identifying unmet healthcare needs.

To Learn More

The Collaborative on Health Reform and Independent Living conducted a range of research projects focusing on health disparities and social determinants of health among people with disabilities. The National Survey on Health and Disability continues to be administered and data are available to interested researchers.  

The Department of Health and Human Services offers information on health and health equity for LGBTQI.

Transgender individuals who are seeking health insurance should know their rights as they evaluate their options in the marketplace, such as their right to sex-specific preventative services and whether plans include exclusions for transgender services. More information is available at healthcare.gov.

To Learn More About this Study

Mulcahy, A.; Streed, C.G., Jr.; Wallisch, A.M.; Batza, K.; Kurth, N.; Hall, J.P.; McMaughan, D.J. (2022). Gender identity, disability and unmet healthcare needs among disabled people living in the community in the United States. International Journal of Environmental Research and Public Health, 19, 2588. This article is available from the NARIC collection under Accession Number J88416 and in full text from the publisher.