Can You Hear Us Now? New center engages adults with disabilities in health research

The Ohio State University Nisonger Center is partnering with key stakeholders in the region and the nation to establish a Rehabilitation Research and Training Center (RRTC) to improve the health and function of people with intellectual and developmental disabilities (IDD).Dr. Havercamp and Dr. Tassé

he U.S. Department of Health and Human Services’ Administration for Community Living just awarded a $4.4 million grant to fund a
team of interdisciplinary researchers at the Ohio State Nisonger Center. Theyll conduct studies aimed at improving long-term health and quality of life for adults with IDD, including adults from racially and ethnically diverse backgrounds. 

Can You Hear Us Now? Engaging Adults with IDD in Health Research is a five-year project that will allow researchers to test evidenced-based surveys adapted in a previous RRTC project called Can You Hear Me Now? This new research presents adapted surveys to adults with IDD and gives them a chance to share their voice. The project will also develop and evaluate a much-needed virtual group therapy program to treat anxiety in adults with IDD.

Susan Havercamp, PhD, professor of Psychiatry and Behavioral Health in The Ohio State College of Medicine and director of Nisonger’s Health Promotion and Healthcare Parity program, says the project will allow this underserved and under-studied population the opportunity to speak for themselves in health research.

“To ensure the quality and relevance of our work, we feel that it is essential to partner with people with IDD, including people of color, using principles of community-engaged research throughout the project,” Dr. Havercamp says.

Historically speaking, this population has been left out of health research. The field lacks accessible tools and measures that allow people with IDD to self-report on their own health, including mental health, as other people often speak for them. This lack of self-report can impact if and how people with IDD get the services that they need.

Also, this population is diverse, and little is known about the mental health experiences of intersecting groups such as people with IDD who are also Black or Hispanic.

“This research strives to better understand and address these needs through a learning collaborative where people with IDD and researchers work together through each step of the research process,” Dr. Havercamp says.

The Can You Hear Us Now? RRTC consists of four research studies led by Dr. Havercamp and co-principal investigators Marc Tassé, PhDprofessor in the Department of Psychiatry and Behavioral Health at the Ohio State College of Medicine and the Department of Psychology at Ohio State, and Gloria Krahn, PhD, MPH, Professor Emeritus at Oregon State University

The first study will test an adapted survey with adults in a clinic to determine if the survey helps patients talk about their mental health needs with their doctors. 

In the second study, researchers will continue a national study from the previous RRTC using adapted measures to estimate how many adults with IDD have mental disorders across the country. Dr. Havercamp observes that “in the United States, the prevalence rate of mental disorders among the IDD population ranges widely from 10% to 60%, so we do not know who needs mental health services the most.

In the third study, evidence-based techniques will be woven together to create a cohesive virtual group therapy program to help adults with IDD cope with anxiety. Researchers will work with grant partners in the fourth study to develop a process for tracking health information of people with IDD longitudinally. A national longitudinal health data system is essential to informing health policies, funding and programs to improve health outcomes for people with IDD.

Since 1966, the Ohio State Nisonger Center, a University Center of Excellence in Developmental Disabilities, has developed a national reputation for its interdisciplinary research, education, training, clinical services and dissemination activities. The center translates methodological research to ensure they can continue to improve quality of life for people with IDD, as well as their families, service providers and communities.