The Nisonger RRTC project, Can You Hear Me Now? Listening to People with Intellectual and Developmental Disabilities in Health Research, has three parts. People with intellectual and developmental disabilities (IDD), health professionals, researchers, and educators work on the following studies as a team.

What are we doing?

The team selected health surveys and changed the wording to make them easier to understand. We are creating new versions of the surveys.

We are testing new surveys with people with IDD all over the country. We are asking how many of them have mental health issues. They are telling us if they think the surveys make it easier for them to let others know about their health needs.

We are making new guidelines for health professionals that use the things we have learned from our studies. These guidelines will help them to treat their patients and help patients speak up about their health.

Why are we doing it?

We want people with IDD to be able to give answers about their own health instead of someone else doing it.

This study will let us know if the new health surveys are useful. It will also record about how many people in the country have both IDD and mental health issues. This number can be used in reports that show the importance of quality health care for people with IDD.

We want to help professionals give better care to their patients. We want to give people with IDD a voice in their health care.

How are we doing it?

The Disability Experiences Expert Panel (DEEP) looked at health surveys and let us know what words to change, so the questions are easy to understand. We added pictures to help make the questions more clear. We are testing the new surveys with adults with IDD and a study partner. We are asking them if they are easy to use.

The team will be speaking to people in six states about their health using the new surveys. We will share what we find with others.

We are looking at what people know about mental health and health care for people with IDD. Where there are gaps in what people know, we will look for ways to fill them in. Our team of disability and research experts are helping us do this in a way that will be clear to people with IDD. People with IDD are being asked to give their ideas of which factors of mental health care are important to them.

Table of Studies

Study Phase Purpose Process Timeline
Study 1 Measures Give people with IDD a way to share their health needs with professionals Work with our researchers with IDD to fix health surveys to make them easier to understand

Test new health surveys with 50 adults with IDD to see if changing the surveys helped people with IDD report their health needs

 2018-2020
Study 2 Prevalence Find out how many adults with IDD also have mental health concerns Give health surveys to adults with IDD across 5 states

Continue testing surveys from Study 1 with adults with IDD from 5 states to see if they are working

Some people will also interview with a doctor. This will help us check if our surveys are giving us the right information about the health needs of people with IDD

2021-2023
Study 3 Guidelines Create treatment guidelines for mental health professionals Look at current research on mental health treatment for people with IDD

Talk with people with IDD and mental health professionals to find out which factors of therapy are helpful

Use info to make guidelines for professionals to use when treating people with IDD

 2018-2023

Scientific Language Table

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