OT researcher and collaborators receive $4.8 million to evaluate mental health service delivery for young adults with intellectual and developmental disabilities

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Photo credit: Disability:IN

Investigators from the University of New Hampshire Institute on Disability along with partners at the University of Florida and the Kennedy Krieger Institute at Johns Hopkins University have received a $4.8 million grant from the Patient-Centered Outcomes Research Institute to determine the best way to deliver crisis prevention mental health services for youth and young adults with intellectual and development disabilities, or IDD, and their families.

“This grant is groundbreaking because it’s one of the first projects funded by PCORI that is not only focused on people with IDD, but also includes young adults with IDD and mental health service experiences and their families as members of the research team,” said co-investigator Jessica Kramer, Ph.D., OTR/L, an associate professor in the department of occupational therapy at the UF College of Public Health and Health Professions.

Joan Beasley, Ph.D., LMHC, a research associate professor at the University of New Hampshire, serves as the project’s principal investigator. She is also the director of the Center for START Services (an acronym for Systemic, Therapeutic, Assessment, Resources, and Treatment), a national evidence-based model of mental health crisis prevention and intervention services for people with IDD.

Youth and young adults with IDD may have greater mental health needs than young people without IDD, and may experience a gap in accessibility to mental health services resulting in crises and emergency service use.

“Multiple studies show that START decreases psychiatric hospitalization, emergency department use and police involvement, all things that young adults with IDD and mental health needs are at increased risk for,” Kramer said.

The new study will compare in-person START service delivery with telehealth to learn if one better supports mental health for young adults with IDD. The team also hopes to determine if there are subgroups of individuals and families for whom one approach appears to be better suited to their needs.

Like many other health practices, START providers began offering telehealth services in response to COVID-19, and there has been preliminary evidence that telehealth provides some benefits, including decreased travel times for providers and greater flexibility for family members to participate, with the same outcomes found with in-person interventions.

“We know that there might be some benefits to teleservice use for this particular group of people and their families,” Kramer said. “We also recognize that there are shifts in health care policies and reimbursement that might lead to more opportunities for teleservice use. In order to respond, we need to generate evidence to determine if telehealth is equally effective as in-person START services.”

Kramer will draw upon her expertise partnering and doing research in collaboration with youth with IDD to co-lead the project’s processes and outcomes associated with stakeholder engagement. Kramer and the UNH team will work with a range of stakeholders, including individuals with lived experience with disability and mental health issues, family members, mental health professionals and policymakers. In addition to conducting focus groups with 180 stakeholders across the country, an engagement team and advisory council will help to guide all phases of the research.

As part of the study, Kramer will play an important role in developing a new patient-reported outcome measure for individuals receiving START services to describe their perceived quality of care. START has historically used a measure designed for use by family members. The new tool is believed to be the first of its kind created for people with IDD to report on satisfaction with their own mental health care.

“We hope that our study findings can inform decision-making, not just for START services, but also to inform other organizations providing mental health services for people with IDD and mental health needs, and ultimately, increase these individuals’ access to effective mental health care,” Kramer said.