Nisonger Rehabilitation Research and Training Center
on Health and Function

Can You Hear Me Now?

Listening to People with Intellectual and Developmental Disabilities in Health Research

The Ohio State University Nisonger Center in partnership with key stakeholders will, through this five-year project, establish a rehabilitation research and training center on health and function for people with intellectual and developmental disabilities (IDD).

The goal of this center is to conduct systematic research that contributes to improving the long term health and function outcomes and health related quality of life for adults with IDD.

The research objectives are to 1) develop and test cognitively accessible self-report measures of health, health-related quality of life, and behavioral health; 2) establish the prevalence of behavioral health conditions among adults with IDD; 3) understand the health and health-related quality of life of adults with IDD and co-occurring behavioral health conditions; and 4) generate guidelines for providing high quality behavioral health care to adults with IDD. 

The Nisonger RRTC will serve as a national resource center on the health and function of people with IDD for people with disabilities, their families, healthcare providers, and other stakeholders.  The center will conduct research, training, dissemination, and knowledge translation activities in collaboration with adults with IDD and other key stakeholders.

Participatory action research and person-centered strategies will support the inclusion of adults with IDD in research, training, and dissemination of the RRTC.

Anticipated outcomes include: 1) adults with IDD will be better able to speak for themselves in health research 2) better understanding of the prevalence, health outcomes, and health-related quality of life of people with IDD and co-occurring behavioral health concerns; 3) guidelines on providing quality behavioral healthcare; and 4) the IDD field will have the information and support to improve health outcomes for adults with IDD.

The expected products are peer-reviewed publications, conference presentations and training webinars.

Research Study Goals and Priorities 

The overall goal of this RRTC is to pursue a systematic line of research and to build future capacity through training, technical assistance, and dissemination to diverse audiences. Research studies are designed to achieve the following: 

1) Adapt diagnostic, health, and health-related quality of life measures to increase self-report in adults with IDD;

2) Determine the prevalence of mental and/or behavioral health concerns and health outcomes among adults with IDD; and

3) Develop best practice guidelines for psychotherapy to advance mental health treatment and interventions for adults with IDD.

Learning Collaborative  on Engaging People with IDD in Health Research

The Nisonger RRTC Learning Collaborative consists of two inter-connected panels that work alongside investigators:

The Disability Experience Expert Panel (DEEP) is made up of adults with intellectual and developmental disabilities who provide input into each of the proposed research studies and knowledge translation activities of the center. DEEP members contribute to the RRTC success by ensuring that 1) we are asking the right questions, 2) our questions are cognitively accessible and user-friendly for adults with IDD, and 3) we leverage our research findings to positively impact the adults with IDD and the field.

The Research Experience Expert Panel (REEP) engages some of the best thinkers from multiple perspectives  to address the difficult problem of adapting instruments and procedures to allow adults with IDD to reliably report on their own health, well-being, and health related quality of life.

Training, Technical Assistance, and Dissemination Activities

Project staff and DEEP and REEP panels will engage in participatory action research as a Learning Collaborative (LC) to guide the design, implementation, evaluation, and improvement of a comprehensive and integrated system of training, technical assistance (TA) and dissemination activities.

Goals: 
1. Train pre/service professionals, people with intellectual and developmental disabilities, and scientific community on activities and outcomes.

2. Monitor and evaluate project and facilitate outreach to government and health care organizations.

3. Translate knowledge and promising practices in multiple venues to multiple audiences

Related Links:

OSUMC Press Release

RRTC Program Info Sheet

 

This Center is funded by the United States Department of Health and Human Services, Administration for Community Living (ACL), National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Grant # 90RTHF0002-01.