Advocacy Effort Priorities
Together, we identified areas where medical professionals can have the greatest impact through advocacy:
- Improving the diagnosis experience for new and expectant parents by providing compassionate, balanced, and up-to-date information
- Supporting health issues across the lifespan, including the transition from pediatric to adult care
- Routinely referring to advocacy organizations and community resources, not just medical specialists
- Identifying and connecting both families and providers within local networks
- Advocating for policies that prioritize home and community-based services rather than institutionalization
- Involvement in state legislation affecting individuals with disabilities, such as the Down Syndrome/Genetic Conditions Information Acts
Strategies for Involving Medical Providers
Dr. Meredith shared a variety of practical ways Down syndrome organizations can build meaningful partnerships with healthcare professionals.
Build Relationships Through Professional Networks
Connect with providers and identify opportunities for collaboration through:
- Interdisciplinary newborn screening coalitions and committees
- Statewide genetics and medical organization chapters
- Regional genetics networks and successor organizations that have developed following the former HRSA regional genetics centers
- Departments of Public Health
Share Expertise Through Education
- Contribute to professional newsletters and email listservs
- Give presentations and grand rounds
- Present at conferences or webinars to educate healthcare providers and raise awareness of advocacy priorities
Partner with Training Programs and Students
Collaborate with genetic counseling programs and other healthcare training programs by:
- Mentoring students
- Advising thesis or dissertation projects
- Participating in research and publications
If you are interested in advising medical student thesis projects, let Stephanie know by emailing stephanie.meredith@geneticsupportfoundation.org!
Involve Medical Professionals in Organizational Leadership
Help medical professionals become ambassadors for your organization and its mission:
- Invite healthcare providers to serve on your boards of directors or medical advisory boards
- Encourage medical ambassadors from your organization to join other medical advisory boards
Collaborate on Grants and Research
Partner with hospitals, universities, or healthcare programs as co-applicants on grant proposals to:
- Develop patient educational materials
- Support diagnosis programs
- Develop provider trainings
- Expand outreach initiatives
Medical providers may participate as consultants or collaborators, making projects more competitive while strengthening relationships between advocacy organizations and healthcare systems. In addition, medical providers can get funding as consultants, which may make them more likely to get involved.
Connect Through Organizational Communications
Use newsletters, social media, and professional platforms like LinkedIn to:
- Share resources
- Highlight advocacy efforts
- Create targeted outreach campaigns for medical audiences
Partner with Hospitals and Clinics
Collaborate with local children’s hospitals, Down syndrome clinics, and specialty centers to:
- Offer caregiver workshops
- Host a Lunch and Learn
- Distribute resources
- Engage providers in advocacy efforts
New Disability Employment Articles
Check out the following recent publications shining a light on policies affecting disability employment and equity:
- Evaluating the Impact of CRPD-Aligned Policies on Disability Equity in the U.S. Federal System — Dissertation by Jennifer Lynne Meredith
- Workers with disabilities deserve better than subminimum wages
