Publications
Prenatal Disability Bias Study
Our team at UK just published a study on the experiences of patients learning about a prenatal diagnosis of Down syndrome and the information provided to them when receiving prenatal screening results. We also examined how implicit and explicit bias impacted the information they received. The article “The impact of implicit Read more…
Training
Operation House Call
Overview of Operation Housecall: A Collaboration between the Stanford MS Program in Human Genetics and Genetic Counseling and the Silicon Valley Down Syndrome Network (SVDSN). What is Operation Housecall?“Operation Housecall is a partnership SVDSN has with Stanford University’s Genetic Counseling Master’s Degree program: each year, every incoming student is paired Read more…
Training
Customizing Medical Outreach for Different Demographics
Watch this video to learn how disability advocacy organizations can customize their medical outreach program for the unique demographics they serve: rural and small areas, medium-sized areas and suburbs, big cities, and state-based organizations. Rural and small areas: Medium-sized areas and suburbs of big cities: Big Cities: State-based organizations:
Training
Building Relationships with the Broader Medical Community
Watch this video for disability advocacy organizations to learn how to build relationships with the broader medical community on national, state, and local levels.
Training
Let’s go on a treasure hunt: Uncover your state’s best-kept secrets for medical outreach
Watch this video to find state-level partners who can help local disability advocacy organizations engage in medical outreach. Funding, Collaboration, Advertisement, Training, and Support UCEDD/LEND programs: https://www.aucd.org/template/index.cfm Protection and Advocacy Organizations: https://acl.gov/programs/find-your-pa-agency DD Council: https://nacdd.org/councils/ Parent Center: Parent to Parent and Family Voices: https://www.parentcenterhub.org/find-your-center/ DPH: Down Syndrome Information Acts: https://www.lettercase.org/issues/state-laws/ State Read more…
Training
Setting Medical Outreach Goals for the New Year
At our last Medical Outreach meeting for local Down syndrome organizations, we discussed how you can grow medical outreach programs by starting the new year with 3-5 medical outreach goals and then evaluating your progress at the 6 months mark with a trusted colleague, peer mentor, board member, or staff Read more…
Publications
Recommendations to Improve the Patient Experience and Avoid Bias When Prenatal Screening/Testing
We are excited to share with you our new manuscript (“Recommendations to improve the patient experience and avoid bias when prenatal screening/testing”) in Disability and Health Journal. Our multidisciplinary team of advisors for the Center for Dignity in Healthcare for People with Disabilities worked for over two years on this article to give recommendations to Read more…
Resources
Standards for Down syndrome Organization Medical Outreach Pages
For Health Professionals Supporting New and Expectant Parents: For Health Professionals Supporting Patients Across the Lifespan: Other Information to Share:
Training
Seeking grant funding for medical outreach
Watch our webinar about strategies that local Down syndrome organizations can use to apply for grants to fund medical outreach efforts: Finding grants. Local Mission specific Relationships with funders Check out funders and other projects funded Federal: Get partners with experience getting federal grants, like universities Applying for grants. Follow Read more…