Project Summary

What is the research about and why is it important?

Youth and young adults with intellectual and developmental disabilities (IDD) have greater mental health needs than the non-IDD population but experience a service cliff after transition out of school and pediatric health care. A lack of evidence-based, preventive mental health treatment has led youth and young adults with IDD to use more crisis services for their mental health compared to people without IDD. Other studies have found that people with IDD go to emergency rooms (ER) and hospitals to treat their mental health more often than people without disabilities. Using emergency services costs a lot of money and is traumatizing for all involved.

In this study, the project team will compare an in-person to a telemental health-delivered crisis prevention program for youth and young adults with IDD. The team will deliver these two interventions within START (Systemic, Therapeutic, Assessment, Resources, and Treatment), a national model of crisis prevention and intervention services for people with IDD. Telemental health means that mental health services are provided through the internet and/or phone.

Who is doing this study?

The research team includes researchers from START, other researchers interested in the experiences of diverse youth and young adults with IDD and their families, and people with lived experience. The team will also receive feedback from an advisory council that includes youth and young adults with IDD, family members, advocacy organizations, mental health researchers and providers, and policy makers.

What will happen in this study?

The project will begin by hearing the perspectives of youth and young adults with IDD, their family members, and mental health providers. They will tell us the strengths and weaknesses of telemental health services. Using what the team learns from these stakeholders, the research team will work with the advisory council to improve the START telemental health protocol. The team will also adapt an existing survey, called the Family Experiences Interview Schedule, to plain language to allow youth and young adults with IDD to directly report their perceptions of the quality of mental health services.

The project will then invite youth and young adults with IDD who are new to START, and live with their family, to participate in this study. If they agree, they will be assigned to receive telemental health or in-person START services. START intervention includes four parts: (a) intake and quarterly assessments, (b) consultation and coaching skills coaching, (c) 24-hour urgent crisis response and intervention, and (d) service linkages, referrals, outreach, and training. Youth and young adults in the telemental health intervention will receive coaching (b) and service linkages (d) through the internet and/or phone. During their time in START and at discharge, the research team will keep track of the amount of emergency service use, measure caregivers’ and youth/young adults’ perceived quality of care and assess mental health stability. The team will analyze these outcomes to learn if telemental health or in-person START supports better mental health for youth and young adults with IDD. The team will also find out if one type of service delivery works better for specific groups of youth and young adults, by ethnicity, race, extent of IDD support needs, and those living in rural versus urban settings.

Who can this research help?

The study will help youth and young adults with IDD, their family members, and service providers know the best way to deliver crisis prevention mental health services to this group. The team will share its results directly with research participants and the START network, as well as with national organizations targeting youth and young adults with IDD and their families. Beyond START, results of this study will help to increase the global capacity to employ telemental health methods with this underserved population.

Project Information

Joan Beasley, PhD, MEd
University of New Hampshire

Key Dates

July 2021
December 2027


Award Type
Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Funding Opportunity Type
Intervention Strategy Intervention Strategies PCORI funds comparative clinical effectiveness research (CER) studies that compare two or more options or approaches to health care, or that compare different ways of delivering or receiving care. View Glossary
Research Priority Area
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: January 20, 2023