OSU RRTC project leaders and staff met with the REEP (Research Experience Expert Panel) and the DEEP (Disability Experience Expert Panel) to:
- Wrap-up Year 3 of our project
- Discuss the status of our studies
- Launch Year 4 of our project
Meeting materials, including the agenda, videos, and handouts, are below:
- Click on the images below to download and view files.
- Watch the videos below to learn more about Year 3 project activities.
Ice Breaker Activity
Stuck on an Island
Year 3 Summary Videos
Study 1: Measure Adaptations
Making health surveys better
for adults with intellectual disability
Study 2: Prevalence Estimates
Finding out how many adults with ID
across the nation have mental health needs
Study 3: Clinical Guidelines
Learning the best ways to serve adults with ID
who have mental health needs
Knowledge Translation (KT)
Sharing our work through articles, presentations, and clear language products
Disability Experience Expert Panel (DEEP)
A group of research partners with lived disability experience who advise our project
Project Timeline Visual
2018 – 2023
Knowledge Translation Demonstration
Straight from the Horse’s Mouth: Increasing Self-Report in
Mental Health Assessment in Individuals with Intellectual Disability
Knowledge Translation – Paper Connections
Knowledge Nuggets Concept Map
Small Breakout Groups
(Pick One Group Below that You Want to Join at the Meeting)
Study 1D: Accessible Health Surveys for
Adults with More Profound Intellectual Disability (ID)
We will talk about ideas for understanding emotions & feelings in individuals with severe to profound ID who do not talk much.
We want to make a mental health survey for people with severe and profound ID.
It is hard to tell how people with severe or profound ID are feeling. A lot of people with severe or profound ID do not talk much. One way to tell how they are feeling is by looking at their facial expressions. People with severe or profound ID might also hurt themselves if they are feeling sick or if they are having negative feelings. If people with severe or profound ID feel sick, their facial expressions might change, they might cry, or move their body differently than normally. People with severe or profound ID can have anxiety or depression. Sometimes people with severe or profound ID can do things that make it look like they have anxiety or depression when they do not. For example, people with severe or profound ID might have trouble sleeping or have jerky movements but not have mental health problems. Because of that, is important to ask caregivers if there have been changes in behavior. It is also important that the doctor know a lot about intellectual disability.
- What are some helpful ways to understand the feelings and emotions of people with severe or profound ID?
- Is it possible to make a survey to understand the emotions of people with severe or profound ID?
- How can we figure out how someone is feeling at the moment?
- How can we figure out how someone usually feels?
Study 2: DM-ID2 Validation Sub-Study
Mental Health Interview Process and Review of Intake Screening
We will talk about materials for a new study called the DM-ID2 Validation Study.
For this study, we want to see if our mental health interview is just as good as a normal mental health visit with a doctor.
- We will talk about our intake form, which is a questionnaire for patients to fill out before a medical appointment.
- We will talk about our doctor form, which doctors fill out to say what kinds of mental health issues a patient might have.
We want to hear what people think of these two forms.
For the intake form, we are asking people with ID questions about their mental health. This is something people will fill out before they meet with a doctor.
For the doctor form, we are asking doctors to tell us what kind of mental health issues they think a person might have. This is for doctors to fill out after they talk with the person with ID.
- Would you add any questions for the documents?
- Would you remove any questions for the documents?
Study 3: Clinical Practice and Treatment Guidelines
We will talk about making mental health therapy guidelines for individuals with ID:
- We want to know which agencies we should talk to.
- We also want to talk about what topics to cover in the guidelines.
- learn about how individuals think about their own disabilities.
- think about how they react to different disabilities.
- think about their beliefs about disabilities.
- learn as much as they can about disabilities from classes, training, and experts.
- learn about laws that help individuals with disabilities.
- make sure individuals with disabilities do not have barriers to services.
- use appropriate language when speaking to individuals with disabilities.
- try to understand the experiences most individuals with disabilities have.
- try to understand unique problems.
- learn about diversity in individuals with disabilities.
- learn about all the things that might impact the development of an individual with a disability.
- recognize that families of individuals with disabilities have strengths and challenges.
- recognize that individuals with disabilities could get abused more easily than individuals without disabilities.
- learn about assistive technology.
- use assessments that are appropriate for individuals with disabilities.
- make sure it is still okay to use a survey if they have to make changes to it for an individual with a disability.
- think about the strengths and limitations of tests they give to individuals with disabilities.
- be careful in how they are looking at test results.
- help individuals with disabilities advocate for themselves.
- use treatments that help individuals with disabilities feel good and feel less stressed out.
- Who should have practice guidelines for treating adults with ID?
- What are some important things to talk about in the guidelines?
Next Round of Funding:
RRTC on Health and Equity (Fairness)
We will talk about ideas for our next project.
NIDILRR (The National Institute on Disability, Independent Living, and Rehabilitation Research) wants people to think about the health of people with disabilities who are poor, not White, or who are LGBTQ (lesbian, gay, bisexual, transgender, queer).
For the new project, researchers should learn more about how to help people with disabilities from different backgrounds. For example, people who are poor, people who are not white, and people who are LGBTQ. They can have a harder time getting help for health problems. They can also have worse health. Learning how to help individuals who have a greater risk of having poor health is important for these new projects.
- What are some ideas for the next project?
- How can we help people with disabilities who are poor, not White, or who are LGBTQ?