Administration for Community Living funds Center for Dignity in Healthcare for People with Disabilities

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The Administration for Community Living has awarded the University of Cincinnati Center for Excellence in Developmental Disabilities a $1.5 million grant to lead eight national partners, including the Human Development Institute (HDI) at the University of Kentucky, and other stakeholders in establishing a Center for Dignity in Healthcare for People with Disabilities (CDHPD). The CDHPD will develop and disseminate protocols to address and prevent healthcare discrimination that can impact Americans with disabilities across the lifespan.

ACL reports that “the Center will develop resources for medical professionals to address and prevent healthcare discrimination, including policies, protocols, and resources. They will also develop resources for reporting healthcare discrimination and advocacy in partnership with people with intellectual and developmental disabilities (I/DD) and their families.” The main areas of focus for the grant will be prenatal screening, organ transplants, mental health, ageing, and end-of-life issues for people with I/DD.

Specifically, HDI will focus on the prenatal screening component through our Lettercase National Center for Prenatal and Postnatal Resources. Stephanie Meredith, the HDI Medical Outreach Director says, “We have been working on prenatal screening resources and policies on the state and national level for the past decade, but we still hear of many expectant families who do not receive the support and information they need at the moment of diagnosis”.

In addition, HDI’s Evaluation Unit will perform the data collection for the focus areas of the grant. Dr. Chithra Adams, Principal Investigator and HDI Director of Evaluation, said “This is a national partnership to ensure that people with I/DD have equitable access to care and accurate information about their health and wellbeing”.

Ultimately, all resources will be shared on the CDHPD website and disseminated by partner and stakeholder networks. According to ACL, the content will include “a gap analysis summary about medical discrimination issues impacting people with I/DD; a stakeholder panel report; protocols on key issues; a national dissemination plan; a systemic plan for reporting healthcare discrimination; the expansion of a toolkit for medical professionals regarding equitable healthcare for individuals with I/DD; and a policy guide for self-advocates and families about civil rights in a medical setting.”

“Unfortunately, many Americans are denied care based solely on their disabilities and that is unacceptable,” said Commissioner of the Administration on Disabilities Julie Hocker. “People with disabilities should receive the full protections guaranteed to all Americans when they receive medical care in any setting.”

For more information, contact Dr. Chithra Adams at Chithra.Adams@uky.edu.