At the end of 2019, the Administration for Community Living awarded a new grant totaling $1.5 million over three years to develop and disseminate protocols to address and prevent healthcare discrimination that can impact Americans with disabilities across the lifespan.

The University of Cincinnati Center for Excellence in Developmental Disabilities was awarded the 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).

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 by performing a gap analysis, assessing and developing protocols, and developing a dissemination plan, which includes setting up pilot sites for comprehensive prenatal outreach programs in select cities. Prenatal and bioethics experts, Brian Skotko, MD; Mark Leach, JD; and Mitchell Levitz will be providing consulting for this component of the grant. In addition, HDI’s Evaluation Unit will perform the data collection for all the focus areas of the grant, and prominent disability scholar and activist Alice Wong will be providing expert input and oversight.

Stephanie Meredith, the Medical Outreach Director at HDI 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. We have needed more public leaders to join in this effort, and we are incredibly grateful to ACL for acknowledging and funding this important work, including other medical discrimination issues across the lifespan. This grant is such meaningful validation for the voices of families who have been seeking ways to address their very valid concerns.”

Stephanie Meredith, Lettercase Program Director

Dr. Chithra Adams, 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.“

Dr. Chithra Adams, HDI Evaluations Unit Director

Ultimately, all the 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.”

Commissioner Julie Hocker, Administration for Community Living
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