The Vanderbilt Kennedy Center (VKC)(TN IDDRC, UCEDD, LEND) recently received a grant from the WITH Foundation to increase the use of its IDD Toolkit by health care clinicians, adults with intellectual and developmental disabilities (IDD), and family members as well as support persons. The new project is called Boosting the Use of the IDD Toolkit to Enhance the Health Outcomes for Adults with IDD.
The IDD Toolkit website –www.iddtoolkit.org – is a longtime VKC project and online resource that provides information for the primary care of adults with IDD. The Toolkit offers health care providers best-practice tools and information regarding specific medical and mental and behavioral health concerns, including resources for patients and families.
Verity Rodrigues, PhD, assistant professor of Pediatrics, is leading the project. Julie Lounds Taylor, PhD, professor of pediatrics, and Pablo Juárez, MEd, BCBA, LBA, co-director of TRIAD, support the project as the co-directors of the VKC University Center for Excellence in Developmental Disabilities (UCEDD). The project team also includes Janet Shouse, program coordinator for the IDD Toolkit; Laurie Fleming, UCEDD program manager; and Camille Reynolds, a Special Education graduate student.
Nearly 40 years of research has found adults with IDD face particular challenges in getting appropriate health care, due in part to the fact that many adult health care providers receive little or no training in the treatment of those with IDD.
“The IDD Toolkit includes a wealth of information and resources to support the health care of individuals with IDD,” said Verity Rodrigues. “The goal of the new IDD Toolkit project is to increase use of the tools to reduce health disparities and improve the health care experiences of individuals with IDD.”
The WITH Foundation (Working for Inclusive and Transformative Healthcare) promotes the establishment of comprehensive health care for adults with developmental disabilities that is designed to address their unique needs. This foundation has funded several projects with the VKC, including the initial grant to create the IDD Toolkit.
Over the years, the IDD Toolkit has been accessed by people in 193 nations and has had more than 1 million page views.
The project team will be working with Avra Selick, Ph.D., project scientist at the Azrieli Adult Neurodevelopmental Centre at the Centre for Addiction and Mental Health in Toronto, Canada, who has been involved in similar implementation efforts in Ontario, Canada.
The new project will conduct focus groups and interviews with various health care clinicians, such as family medicine physicians, internists, and nurse practitioners, and with individuals with intellectual or developmental disabilities and family members. The team expects to engage approximately 24-26 health professionals, 15-18 family members or support persons, and 15-18 self-advocates.
The objective is to find the best methods of making people aware of these tools and identifying strategies to increase the use of the tools by primary care providers, with the goal of improving the way health care is delivered for adults with IDD.
If you are interested in learning more about this project or would consider taking part in the focus groups, email [email protected].
