This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.
What is the research about?
Intellectual and developmental disabilities, or IDDs, can affect how people learn, communicate, and cope with problems. About 40 percent of people with an IDD have a mental health condition that requires treatment. People with IDDs use crisis services, like the emergency room, for mental health care more often than people without IDDs. But these services often don’t meet the needs of people with IDDs or their family caregivers.
A proven crisis prevention model called START can help people with IDDs receive the care they need to avoid mental health crises. START provides:
- Assessment to help people with IDDs and their families access effective mental health services
- Coaching to teach people with IDDs and their families coping skills, ways to prevent crises, and what to do if they need help right away
- Crisis prevention outreach, such as through home or school visits, to improve coordination of mental health services across care systems
- 24-hour crisis response from the START team
In this study, the research team is comparing START services delivered in person or by telehealth. Telehealth is a way to provide care to patients using video, internet, or phone. The team is looking to see how well both ways of providing START prevent the use of crisis services and improve patient mental health.
Who can this research help?
Results of this study may help young people with IDDs and their caregivers and care teams when considering ways to deliver mental health and crisis prevention services.
What is the research team doing?
The study has two parts. In the first part, the research team is tailoring START telehealth services for diverse young people with IDDs and their families. The team is asking young people who have received START, their family caregivers, and START staff about their experiences with telehealth services. The team is also adapting a survey on the quality of mental health services so people with IDD can give feedback about their care experience.
In the second part, the research team is recruiting up to 500 people ages 14–35 with IDD across the United States who are newly enrolled in START programs. The team is assigning people by chance to one of two groups. People in the first group receive all four START services in person. People in the second group receive coaching and outreach via telehealth and assessment and 24-hour crisis response in person.
The research team is looking to see how well in-person and telehealth START services work for young people based on traits such as race and type of IDD diagnosis.
Young people with IDDs, caregivers, and mental healthcare providers are helping to plan and conduct this study.
Research methods at a glance
|Randomized controlled trial
Phase 1: Up to 50 family caregivers, 50 START recipients, and 50 START staff
Phase 2: 500 young adults ages 14–35 with IDDs who live with a family caregiver
Primary: emergency services use, family caregiver experiences with mental health care
Secondary: mental health
|Up to 1-year follow-up for study outcomes