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 studies as a team.
What are we doing?
The team will use health surveys and change the wording to make them easier to understand. We will create a new version of the surveys.
We will test new surveys with people with IDD all over the country. We will ask how many of them have mental health issues. They will tell us if they think the surveys make it easier for them to let others know about their health needs.
Make 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.
To help professionals give better care to their patients. To give people with IDD a voice in their health care.
How are we doing it?
The Disability Experiences Expert Panel (DEEP) will look at the surveys and let us know what words to change so the questions are easy to understand. We may add pictures or words to make the questions more clear. We will then test the new surveys with adults with IDD and a study partner. We will ask them if they are easy to use.
The team will speak to people in six states about their health using the new surveys. We will share what we find with others.
We will look 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 will help us do this in a way that will be clear to people with IDD. People with IDD will be asked to give their ideas of which factors of mental health care are important to them.