By Jennifer Kiilerich
Only about 20 percent of adults with intellectual and developmental disabilities currently access formal support services. Meghan Burke, professor of special education at Vanderbilt Peabody College, has built a career around growing that number, helping those with disabilities and their families better tap into needed supports like Medicaid waiver services, Social Security, vocational rehabilitation options and more.
Her influential work has included developing advocacy programs like the field-leading Vanderbilt Kennedy Center Volunteer Advocacy Project (replicated in seven states and multiple languages), publishing and lecturing on disability research and policies, with more than 170 articles published, and working as an associate editor at the industry’s top journals. Through two recent research grant awards, she will continue her mission. One project seeks a deeper understanding of how adults with disabilities and their families access supports, and the other explores a little-researched group: siblings of individuals with profound autism.
Defining and quantifying supports for adults with disabilities
Do adults with disabilities prefer more family support and less governmental support, or vice versa? Which combination leads to measurable improvements in their lives? Pinpointing the ideal balance of services, while considering the lived experiences of adults with disabilities and their families, is a complex task.
Funded by a $599,000 grant for the three-year project “Understanding integrated supports for community living and participation among adults with intellectual and developmental disabilities (IDD) and their families,” awarded in 2024 by the National Institute on Disability, Independent Living and Rehabilitation Research, Burke and co-investigator Kelli Sanderson, associate professor at California State Long Beach, hope to learn how to strike that equilibrium.
“Integrated supports” describes the combination of natural, or family/peer-provided, and formal, or paid/agency-based, support services. “What we’ve seen is that to have good outcomes, such as being meaningfully employed and engaged in the community, you really need both types of support,” said Burke.
Burke and Sanderson will work in three phases, initially interviewing around 150 individuals with disabilities and their families to find out how they characterize the supports they receive, with the aim of bridging the gap between the way researchers describe supports and how those receiving services view them. “If we’re not all on the same page with how we talk about things, then that’s a problem, because we can’t generalize what the results are,” noted Burke.
Burke will also investigate barriers to supports and whether varied backgrounds impact access. “We’re really trying to be intentional about including a large swath of the population,” she said.
Next, the team will study what role grassroots, or community-based, organizations play in aiding individuals and their families in acquiring, and balancing, natural and formal supports. Finally, “the third phase, which we are really excited about,” said Burke, “is trying to develop a quantitative measure based on all these findings. We want to understand how to accurately measure and define supports so that we can track change over time and figure out what change leads to positive outcomes.”
The data-driven nature of the project means that the findings could have important policymaking implications and could also provide a much-needed roadmap to finding the best balance of supports for a wide variety of individuals.
Understanding the impact of profound autism on siblings
With a one-year applied research grant from the Organization for Autism Research, Burke is also beginning another study, “Exploring challenging behavior, trauma and caregiving among siblings of individuals with autism.” There is little research about the potential struggles faced by siblings of those with profound autism (autism paired with an intellectual disability, resulting in distressing behaviors like physical aggression and meltdowns). Burke hopes not only to understand these siblings’ experiences, but also to create targeted interventions for support.
“When we look at the sibling research that’s been done,” she explained, “we tend to find that the participants often reflect the oldest female who does not have a disability, who has a close relationship with her brother or sister with a disability, wants to be a teacher or social worker and participate in research.” In addition, those same siblings are likely to become caretakers when parents pass away.
On the other hand, others in the field began to notice that siblings of autistic people with distressing behaviors were not participating in research. Members of the Vanderbilt Kennedy Center, Sibling Support Project, and The Arc of the United States approached Burke about the need to focus on siblings of individuals with distressing behaviors. “We don’t know much about their experiences,” said Burke.
Studies suggest that despite some of the difficulties of this lived experience, siblings in this category also may gain life skills like greater resilience, hidden talents and more.
“There might be negatives and positives. So, we’re trying to probe in both directions, which is exciting,” Burke noted.
Following a series of interviews with siblings, parents and autistic family members, Burke will work to adapt a survey measure that is specific to siblings of autistic individuals with distressing behaviors. “Then we will be able to identify who’s more likely to experience these challenges so we can develop targeted interventions to support them,” she explained. The findings could bring meaningful assistance and understanding to an understudied population in the autism community.
A common thread
A driving influence in all of Burke’s work is her robust community partners and advisory boards, which are comprised entirely of individuals with disabilities and family members of people with disabilities. She will rely on these teams in both upcoming research projects. “We intentionally sought out assertive people. They’re unapologetic about giving their feedback, which is great,” Burke said.
In addition, her research team members are part of the disability community. “It’s been really eye-opening and helpful to have people who are on the ground, who are giving us feedback to make sure that we’re asking the questions that are actually going to result in meaningful improvements for the community,” added Burke. A thoughtfulness about centering the populations she studies is part of what will continue to make Burke’s work especially impactful as she moves forward with these innovative projects.
