The Community Research for Health Equity (CRHE) program, managed by AcademyHealth and funded by the Robert Wood Johnson Foundation (RWJF), supports community-led research to address local health care system issues of importance to communities of color, people with disabilities, LGBTQ+ individuals, and other historically marginalized populations.
Over the next year, we will be featuring interviews with CRHE grantees to showcase and celebrate their work during relevant celebration and recognition months. In the second interview of this series, AcademyHealth Research Associate, Ellie Jorling (she/her), speaks with Kelli Caseman (she/her), Executive Director of Think Kids, to discuss their current project and to celebrate disability research during Disability Pride Month. Think Kids’ project, “When All Are Counted,” assessed how the state of West Virginia compiles and reports health surveillance data to build a more inclusive surveillance system, with a focus on three specific populations: the Black, LGBTQ+, and disability populations. Their conversation has been edited for length and clarity.
Ellie Jorling: How did you select your research question (why this question, and why now)?
Kelli Caseman: We had previously studied the navigational paths that people with disabilities follow to access health care and found that there is very little data being collected about them. We started looking at things from the context of what we don’t know and what we should know. What data do we know should be reported because it’s federally required, and is it being reported? And can that be used to help address inequities that people with disabilities face in West Virginia? A more inclusive health surveillance system wouldn’t just affect people with disabilities. It would also affect other historically marginalized populations in the state, particularly the Black and LGBTQ+ communities, which were also a focus of this project. There’s an intersection between these populations, and we thought it would be very interesting to learn more.
West Virginia has not had a state budget increase in eight years. We have little data to speak on the adverse effects of these budgetary limitations. The health of each of these populations has been harmed by the cutting of program services and community supports. It’s hard to articulate issues with the health care system without comprehensive data. When the state government is one of the primary funders of health surveillance and the health care system more generally, you don't have a lot of individuals who are affiliated with or funded by the state who are willing to stand up and say, "there's a problem with the system itself." As a result, there are health care services that just aren’t available, and individuals must go out of state to access care. We don’t have data to understand how many families are forced into accessing out-of-state care, and what those services are. We don’t know how many kids in West Virginia have autism, and how many of them sit on waitlists to be tested or access services. That data either doesn’t exist or isn’t available. West Virginia has one of the highest rates of people with disabilities in the country, and the state acts as if this is just a minute population of people.
Ellie Jorling: What have you learned from your study so far?
Kelli Caseman: I learned that people are very distrusting of the health care system and of the government right now. It was hard to stay specific to conversations around building a more robust health surveillance system because once people were in a space with our researchers where they could talk about health care, their identity, their sense of place, they wanted to share their stories. It was the first opportunity for them to talk about these sorts of things. Before the participants talked about their desires for a more inclusive health care system, they wanted to share their stories that brought them to places of distrust.
I had one person on our Advisory Board, who is a mother of two young men in their 20s living with autism, say to me, “What do you mean by ‘disability community’? We don’t have a disability community in our state, at least not in my town. My sons have never seen or met anybody like them, and so they have no sense of community.” We use the term “community” because it makes sense in conversation but, taken literally, it’s not the reality for many people.
When you think about the disability community, it’s an umbrella term for all these different issues, and when West Virginians with disabilities came to the table to talk about the issues, it was specific to a diagnosis. We don’t have the data to fully understand these different communities and their experiences. West Virginia state government officials told me that when they conduct surveys, people from specific populations don’t respond. It is likely they’re not responding because they don’t trust the system.
The system itself should be available for inquiries and for collecting information about the types of inquiries it receives. From there, they can demonstrate to communities that they are gathering data and can respond accordingly.
Ellie Jorling: How does being embedded within your community inform your work?
Kelli Caseman: Years ago, most nonprofits worked in communities without being part of them. They often gave voice to what they thought was going on in that community without having the community be a part of it. It has been wonderful over the last 20 years to see that change. We wouldn’t get far advocating in a resource-poor area like West Virginia without having the full consent of the partners working in this space.
Partnering is the only way in a place like West Virginia that you can do all the things that need to be done, because we don’t have the money and manpower to get it done alone. Additionally, Think Kids had nobody on staff who identified as having a disability, but we had people with disabilities on our Advisory Board, which guided everything we did. We met quarterly, and for everything we did, we discussed with and got the consent of the Advisory Board.
Ellie Jorling: How do you want to celebrate and think about your work, and the future of disability research, during Disability Pride Month?
Kelli Caseman: At the conclusion of the project, our project team hosted a convening with participants and community members. When we held the focus groups during our study, they were specific to the disability, Black, and LGBTQ+ communities. The convening introduced people who didn’t know one another from these different communities, and they found that they had some commonalities and that the research results rang true.
As part of the project, Dr. Traci Jarrett and I met with the West Virginia State Health Officer and Commissioner for the Bureau of Public Health, the Deputy Commissioner, and the State Epidemiologist from the Commissioner's office. They showed great interest in the project and agreed that the reported data should be more representative of all West Virginians. We reminded and encouraged these public health leaders to make their data collection processes more accessible and engaging on the community level, because people want to be part of the process.
Projects like this don’t come along very often, and I think that it was meaningful to give people an opportunity to say, “here’s where the problem is, and how could my health be better in the place that I’m living?” that they assumed just could not be improved. I was thankful that we had the opportunity and the funding to give people that space not just to participate in the project, but to think, “how can I make my community better, healthier, and more inclusive?” I’m hoping that our state health system is thinking that if they want people with disabilities to participate in research collection and garnering data, they must give them something back by being more accessible to people with disabilities.
If you would like to read more about Think Kids’ CRHE grant, you can view that here. To watch an interview with Think Kids’ collaborator, the West Virginia Prevention Center’s Jessica Coffman, on the value of community-led research in this project, you can view that here. This work is made possible with a grant from the Robert Wood Johnson Foundation (RWJF). The views expressed here do not necessarily reflect the views of RWJF.