Study Phase Purpose Process Timeline
Study 1 Measures Increase self-reports in adults with intellectual and developmental disabilities (IDD)
  • Adapting and testing diagnostic health and health-related quality of life measures to make them more accessible for adults with IDD
  • The Disability Experiences Expert Panel (DEEP) will provide insight and feedback on how to best adapt the measures for adults with IDD.
  • Pilot-test all adapted measures with 50 adults with IDD and their caregivers to ensure the measures are accessible.
 2018-2020
Study 2 Prevalence Determine the prevalence and health outcomes of mental and/or behavioral health concerns among adults with IDD.
  • Work with four other states to administer diagnostic health and health-related quality of life measures to a national sample of 1,945 adults with IDD
  • Administer instruments adapted in Study 1: Measures to this sample along with several other health-related and diagnostic measures
  • Run clinical interviews with a small sample of 200 adults with IDD. This small sample will be taken from the large, national sample. We will compare the findings from the clinical interviews with our findings from the larger sample. By doing this comparison, we will find out if our adapted measures give us the mental and behavioral health information we need.
 2021-2023
Study 3 Guidelines Create best practice guidelines for psychotherapy to advance mental and behavioral health treatment for adults with IDD
  • Look at all the available literature relating to high-quality mental and behavioral health care for individuals with IDD
  • The Learning Collaborative panels (DEEP and REEP) will work together to summarize the findings and identify any gaps in research
  • Conduct focus groups with both adults with IDD and clinicians to gain feedback on factors related to high-quality mental and behavioral health treatment
  • Create guidelines for delivering high-quality mental and behavioral health care to adults with IDD using the results from the literature review and focus groups
 2018-2023