San Mateo, CA, February 6, 2023 – The WITH Foundation is pleased to announce that a total of $200,000 will be awarded to four organizations as a result of their recent RFP. The RFP provided a funding opportunity for organizations working on projects that foster healthcare equity for women with intellectual and developmental disabilities (I/DD). A secondary goal of the RFP was to foster new partnerships or significantly enhance existing partnerships between disability organizations, advocates, community organizations, and healthcare providers. Projects that intentionally address the experiences of Black women with I/DD, women of color with I/DD, and other historically-excluded perspectives within inclusive gender-based and gender-affirming care were also encouraged.
“WITH Foundation is privileged to support these projects which foster healthcare equity for women with I/DD in ways that center the leadership of women with disabilities and/or engage women with I/DD as experts,” said Ryan Easterly, Executive Director of the WITH Foundation.
The following projects were selected for funding:
Family Voices, Lexington, MA
Advancing the Quality of Health Care Transition for Black Autistic Adolescent Girls
Research shows that girls are less likely than boys to receive a timely diagnosis of autism, and that Black children are more likely to experience misdiagnosis and extremely delayed autism diagnosis. Autistic Black girls, at the intersection of these disparities, experience the impact of both. This project will engage Black women self-advocates and family advocates to develop and disseminate educational materials about barriers to diagnostic supports for Black girls and women with autism, as well as recommendations to address the unique needs of this intersectional population across the lifespan.
National Down Syndrome Society, Washington, DC
NDSS Primary Care Provider Guide to Women’s Health and Down Syndrome
The purpose of this project is to engage with primary care providers (PCPs) to address healthcare inequities for women with Down syndrome. This information will be provided in a written guide and an eLearning course, allowing PCPs to choose the resource that best suits their learning style. The resources will be co-created by professionals in the medical community and adult women with Down syndrome to ensure there is a balanced and equitable approach to topics and recommendations. After reading the guide or taking the course, PCPs will understand how to treat patients with Down syndrome who have nuanced healthcare needs and will use the tools learned to improve their patient-centered care. The project partners with the Down Syndrome Medical Interest Group (DSMIG), the American Academy of Developmental Medicine & Dentistry (AADMD), and Kramer Davis Health.
Rowan University Foundation, Glassboro, NJ
Creating Educational Materials for PCPs in Support of Reproductive Health Equity for Women with I/DD
The RISN Center proposes a project to develop and distribute educational materials, including a Creating Accessible Reproductive Exams and Services (CARES) Best Practices Manual for Primary Care Providers and an accompanying presentation. These materials will be distributed to at least 200 PCPs and 400 medical students during the project period. All educational materials will be developed in collaboration with self-advocates with I/DD. The project partners with the Arc of New Jersey and Virtua Pride Primary Care.
The University of Texas Rio Grande Valley Foundation, McAllen, TX
Investigating knowledge gaps of Primary Care Providers when Serving Pregnant Women with I/DD
Pregnant women with I/DD experience greater pregnancy risks and poorer outcomes. These disparate outcomes may be due, in part, to primary care providers (PCPs) lacking the knowledge and skills to provide quality care for this population. The study aims to identify and document barriers in quality prenatal care experienced by women with I/DD and PCPs’ knowledge and skills gaps when providing services to pregnant women with I/DD. The project will conduct in-depth interviews with 30 women with I/DD (and their support persons if applicable) who are currently, or have recently, been pregnant and sought prenatal care, and 30 PCPs who have cared for such patients.
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WITH Foundation promotes comprehensive and accessible healthcare for adults with developmental disabilities in the United States.
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Press Contact: Laura Shumaker
Director of Communications, WITH
communications@withfoundation.org