Up to 40 percent of people with intellectual and developmental disabilities (I/DD) experience co-occurring mental illness. In The Arc’s recent national survey, family caregivers’ top health concern was the behavior and mood of their family member with I/DD. Despite the prevalence of mental health needs among people with I/DD, little is known about optimal treatment approaches. This uncertainty has led to an overreliance on antiquated and potentially unethical approaches, such as seclusion, restraint, and psychotropics, that may contribute further to poor mental health. This project will build a national partnership between young adults (YA) ages 18 to 30 with I/DD and their families, service providers, and researchers to identify mental health research priorities for YA with I/DD. This partnership will be co-led by Dr. Jessica Kramer, a health researcher with experience partnering with YA with I/DD, and The Arc of the United States, a national I/DD advocacy organization.
Months 1–3: Develop standards for effective and respectful partnerships with YA with I/DD.
Months 2–8: Conduct a series of national in-person and virtual town hall meetings to elicit input about mental health needs from YA with I/DD and stakeholders.
Months 8–10: Conduct a national Delphi survey to further refine priority areas.
Months 11–12: Reach consensus on mental health priorities and corresponding intervention needs for further exploration in a Tier B proposal. Our vision is to establish a sustainable partnership that is poised to engage in patient-driven mental health research that will improve care and facilitate the lifelong well-being of YA with I/DD.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.