A New Frontier: Health care access for a doubly marginalized minority

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“I’d like to connect you with an advocate who can help you enroll in home and community-based services,” a Tennessee Disability Pathfinder information and referral specialist told the young person in need.

This call seemed like many of the calls to Tennessee Disability Pathfinder – someone with developmental disabilities needed help to find a place to live and basic supports. This caller had just left their parents’ home for the first time.

The caller paused for a long time. “I don’t know if I feel safe doing that,” they said. “Is there anyone you can connect me with who understands sexual and gender minorities?”

The specialist realized the typical information and referral process was not going to meet this person’s needs.

Calls, like this one, have increased over the last several years.

Sexual and gender minorities are part of every community but are often the least seen, welcomed, or understood:

  • An estimated 3-5 million people in the U.S. identify as being LGBTQIA+ (an acronym typically used to mean Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, Asexual, and Pansexual) and having disabilities.
  • Both people with disabilities and people who identify as sexual/gender minorities report more health problems and more barriers to accessing healthcare than the general population. Research that has focused on some version of the intersection of those identities has found even greater barriers. (One example of that research may be found here.)
  • The Tennessee Council on Developmental Disabilities funded a Vanderbilt University study last year on disability services and how people access them. People with disabilities who identified as LGBTQIA+ reported higher rates of:
    • Problems finding information they needed
    • Problems connecting with service providers
    • Lack of existing resources

Vanderbilt Kennedy Center (VKC) director Jeffrey Neul, M.D., Ph.D., Vanderbilt Kennedy Center for Excellence in Developmental Disabilities (VKC UCEDD) co-director Elise McMillan, J.D., and Vanderbilt Consortium LEND (Leadership Education in Neurodevelopmental Disabilities) director Evon Lee, Ph.D., are on the Executive Diversity Council for Vanderbilt University Medical Center (VUMC).

In Tennessee, the VUMC’s Program for LGBTQ Health is one of the only networks in the Southeast with health care providers who understand and welcome sexual and gender minorities. However, the Center does not have specific training in disability. This was explained to the caller above. They replied, “Right now, if I have to choose one or the other, I need to work with someone who is informed in LGBTQ+ issues. I am not safe otherwise.”

We know we must forge a new frontier.

Tennessee’s Developmental Disabilities Network (TN DD Network) has connected with Tennessee Disability Pathfinder and organizations serving LGBTQIA+ communities across the state. As usual with a new frontier, we must start by building relationships. From there, we can start building that bridge between the disability and LGBTQIA+ health care worlds.

This is what the TN DD Network is best on: forging new frontiers in the disability field.

  • Twenty years ago, we forged the path to Employment First. Back then, most people were still not sure that people with developmental disabilities could work.
  • More recently, we forged the path to protecting the decision-making rights of people with developmental disabilities. The Center for Decision-Making Support – the first of its kind in the U.S. – came from that work.

We are just beginning the work to understand healthcare for gender and sexual minorities with disabilities, but we know where we are going. Together, we will work to:

  • Bridge the disability and LGBTQIA+ communities and more fully understand the needs of people who experience both identities.
  • Develop a place to find health care resources specifically for this community. These resources will live on the Tennessee Disability Pathfinder website.
  • Make sure Tennessee’s healthcare providers have resources and training to best serve people with disabilities who are LGBTQIA+.

If you or someone you love is an LGBTQIA+ person with a disability, your input on the health care needs you have experienced is welcome. You can contact Tennessee Disability Pathfinder with your perspective at tnpathfinder@VUMC.org or 1-800-640-4636

Your story will be kept confidential but will inform how the TN DD Network works for progress for Tennessee’s disability community.

A local group of autistic young adults who are LGBTQIA+ shared their perspective on accessing health care. We’ve included just a few of their comments:

“Can it be made easier to figure out if a provider will be knowledgeable in both LGBTQIA+ issues AND disability issues?”

“I have a hard time trusting people when they say they have limited/no experience working with autistic people.”

“I wish there was a place I could go where the providers are part of the LGBTQIA+ community.”

“Because everything is changing and dynamic, I would like providers to commit to ongoing training/learning about LGBTQIA+/disability issues.”

“I would like to see gender inclusive intake processes. What you fill out should be respected by all staff who interact with you.”

Top photo by Adobe Stock

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This is a monthly email of Vanderbilt Kennedy Center Notables published by the Communications staff of the Vanderbilt Kennedy Center. Between issues of Notables, you can stay up to date on the latest Vanderbilt Kennedy Center news, information, and resources via the Vanderbilt Kennedy Center’s Facebook page.