July 12, 2018

Experiences of transgender, nonbinary and gender nonconforming youth in Wisconsin

Transgender, nonbinary and gender nonconforming (TNG) youth are becoming more visible across the U.S. and the world, and you may have noticed more and more TNG youth, such as Gavin Grimm and Ashton Whitaker, speaking out about their experiences.

As you read about these amazing young people, maybe you've wondered about the broader day-to-day experiences of TNG youth. Or maybe you've read about the higher risk of mental health concerns for TNG youth, but realized that there's not always a lot of context and information about the other aspects of the lives of these young people.

Our research team wanted to understand that context, so we developed a study to learn more about the experiences of these youth in our state as they navigate their day to day lives: in their homes, schools, communities, and health care systems. The Transgender Youth Resource Network of University of Wisconsin's Department of Pediatrics partnered with the Wisconsin Transgender Health Coalition in performing the first state-wide survey assessing the needs and experiences of TNG youth. Our study recruited TNG youth from all corners of Wisconsin to take an online survey, with the results representing the experience from more than 300 TNG youth that participated. We also invited TNG youth in different parts of the state to participate in focus groups, to give a voice to the numbers that we saw in our survey. The results of our survey were striking.

Today, we're going to focus on the results related to access and experiences in health care. To make sure that TNG youth voices are represented, I'm going to include some quotes from our focus groups to highlight what these experiences are really like for these individuals.

"I rarely go to the doctor when I need to, even for serious issues, because all health care professionals I've met and talked with have disrespected my identity or dismissed it completely."

Lack of access to competent providers and health care was a central theme of the results of our survey. Eighty percent of TNG do not have either a specialty or primary care provider that is competent in addressing their needs as a TNG person. This was the primary barrier to care identified by youth, followed closely by the fact that information about care for TNG people is not easily or readily available and by lack of health insurance coverage for TNG people and their needs. Nearly 40 percent of youth also reported that providers competent to care for TNG people are a needed resource in their community.

"I've been harassed by doctors because of my gender, so now I don't go even though I need to."

Though healthcare professionals of all kinds have a professional duty to provide care for and not harm their patients or clients, 78.7 percent of respondents to our survey had experienced harm from a medical provider and 64.1 percent experienced harm from a mental health provider.  Examples of harm included:

  • Negative language about TNG identities

  • Denial of care, with providers refusing to discuss their needs, examine them or initiate care, or ending a relationship with that young person

  • Denial of identity, by refusing to acknowledge the young person's gender identity

  • Incompetence related to the care of TNG people

Additionally the majority of respondents also said that they had had to educate medical providers and mental health providers about TNG care, even though clear recommendations (pdf) and guidelines exist.

"I broke my foot in August and avoided getting medical treatment because of the lack of trans competent doctors."

"I rolled my car three times off (the highway), but did not go to the emergency room until three days after, due to an intense uncertainty about emergency room doctors, nurses, and staff's competency with trans people."

Delay or avoidance of care — at least in part because of concerns about provider competence — were another major theme.  More than one quarter (27.6 percent) of participants avoided or were unable to access necessary healthcare within the last year.

Additionally, only half of respondents reported that they had shared their gender identity with their primary care provider, perhaps because of concerns about the types of harm listed above that so many TNG people experience.  

"I know that a lot of my friends who are trans or nonbinary, like when they try and transition, the insurance at the beginning may cover it, but then suddenly it'll drop it."

Lack of insurance coverage was another major barrier to care identified by these youth. Only 2.3 percent (7 people) reported having health insurance that includes coverage for all medical and mental health needs related to gender transition (mental health care, medications and surgeries).

The results of this survey were both striking and — at the same time — were not surprising. Adult studies show similar experiences in and barriers to care, including negative experiences with providers and delaying needed care. At the UW School of Medicine and Public Health, we believe that our state can do better in serving the needs of these youth. As a result of our report findings, we put forward six key recommendations to improve the lives of TNG youth in our state. For our part, we're going to continue to:

  • Provide excellent care and continuously strive for access and improvement

  • Ask questions about TNG youth experience

  • Advocate for resources to improve the lives of TNG youth in our health system and beyond

Together, we can improve the lives of youth of all gender identities in Wisconsin. Want to learn more or get involved? You can:

  • Visit the Wisconsin Transgender Health Coalition website or Facebook page for opportunities to get involved in education, advocacy and policy work.