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 (ID/DD), health professionals, and researchers will work together across all three studies.
What are we doing?
The team is making health surveys easier to understand. We are using the new surveys to interview people with ID/DD about their health.
We are testing new surveys with people with ID/DD 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 ID/DD 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 ID/DD and mental health needs. This number can be used in reports that show the importance of quality health care for people with ID/DD.
We want to help professionals give better care to their patients. We want to give people with ID/DD a voice in their health care.
How are we doing it?
The Disability Experience 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 clear and accessible. We are testing the new surveys with adults with ID/DD and a study partner. We are asking them if they are easy to use.
The team is 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 ID/DD. 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 ID/DD. People with ID/DD are being asked to give their ideas about which factors of mental health care are important to them.
Tables of Studies
SCIENTIFIC LANGUAGE STUDY SUMMARIES
STUDY 1
STUDY 2