The Vanderbilt Kennedy Center has joined seven national partners and stakeholders on a new project to address the health disparities of Americans with disabilities that result from inequities in care across the lifespan. Led by the University of Cincinnati Center for Excellence in Developmental Disabilities, the project will work over a three-year period to establish a Center for Dignity in Healthcare for People with Disabilities (CDHPD).
The stated activities of the CDHPD are to understand what professionals and individuals with disabilities need to know more about and do so individuals with disabilities will receive better care; to increase access to medical protocols that help with equitable healthcare for people with intellectual and developmental disabilities; to increase access to information about what stops people with intellectual and developmental disabilities from acquiring affordable, accessible healthcare, as well as achieving the same health outcomes as people without disabilities; and to increase support for families and individuals with intellectual and developmental disabilities to identify and address healthcare discrimination and medical ableism.
The CDHPD is funded through a Projects of National Significance (PNS) grant from the Administration for Community Living (ACL). ACL designates and awards PNS grants to focus on “pressing issues affecting people with disabilities and creating and enhancing opportunities for these individuals to contribute to, and participate in, all facets of community life.”
“We are very excited to be involved in this work and to further the vision of ACL Commissioner Julie Hocker, for whom heath care equity is a priority,” said Elise McMillan, J.D., director of the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities (VKC UCEDD). “As we know, there are far too many people with disabilities who are denied health care, or who do not receive lifesaving care because of their disability and/or because of a lack of education. Through this grant, we are working with a number of partners with a wide range of expertise to help address disability-based discrimination in health care.”
Project partners include University of Cincinnati for Excellence in Developmental Disabilities (lead), Maryland Center for Developmental Disabilities, Boggs Center on Developmental Disabilities, University of Kentucky University Center on Disability, Family Voices, the Autistic Self-Advocacy Network, and the American Academy of Developmental Medicine and Dentistry.
The VKC UCEDD will work with CDHPD partners to expand and enhance the web-based Healthcare for Adults with IDD Toolkit for medical professionals. The IDD Toolkit was developed to give primary care providers electronic access to best practice tools that will enable them to more readily serve adults with IDD.
“Working with this group of knowledgeable partners toward the common goal of ending health care discrimination is extremely important,” said Janet Shouse, program coordinator of the IDD Toolkit. “This isn’t just one more way to complain about health care. It’s partnering with health care providers to talk about why it’s important to provide equal access.”
Courtney Taylor is director of VKC Communications and Dissemination.