October is National Down Syndrome Awareness Month (NDSAM). The Modern Medicaid Alliance sat down with the National Down Syndrome Society (NDSS) to learn more about their efforts to support individuals with Down syndrome and their families.
Modern Medicaid Alliance: Tell us about the National Down Syndrome Society (NDSS) and your work to empower individuals with Down syndrome and their families.
NDSS: Founded in 1979, the National Down Syndrome Society (NDSS) empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions. Our organization’s work is achieved through three key areas of programming: Resources & Support, Advocacy & Policy, and Community Engagement.
NDSS provides individuals with Down syndrome, their families, caregivers, and the public with information to support them from birth to end of life. Through events, videos, publications, and our website, we provide free resources on a variety of topics including health, wellness, education, employment, adulthood and aging, financial wellness, and information for new and expectant parents. Our Adult Summit conference addresses the needs of teens and adults with practical resources and educational opportunities for individuals with Down syndrome, families, caregivers, and professionals. Through our helpline and info email, our staff responds to questions and connects individuals with Down syndrome, family members, professionals, and others with referrals to our network of more than 300 local Down syndrome organizations.
Modern Medicaid Alliance: What are some of NDSS’ key policy and advocacy priorities when it comes to Medicaid?
NDSS: In general, we prioritize protecting Medicaid to ensure it can continue to serve those who need it most, as Medicaid is the primary health insurance for most people with Down syndrome. Our efforts include increasing our community’s awareness and understanding of their Medicaid eligibility, waivers available in their state, and their potential dual eligibility for Medicare and Medicaid. Another focus is on expanding access to Home and Community-Based Services (HCBS). Tangentially, we also recognize the importance of supporting the Direct Support Professional (DSP) workforce and addressing the current workforce crisis. Lastly, we are actively working on improving medical access, for example, through coverage of Alzheimer’s drugs. Read the “Medical Access” section to learn more.
Overall, we hope to continue our advocacy efforts in support of coverage policies at the Centers for Medicare & Medicaid Services (CMS) that positively impact individuals with Down syndrome, family members, and professionals.
Modern Medicaid Alliance: Could you share some examples of specific initiatives NDSS is implementing within your programming areas?
NDSS: NDSS advocates for federal, state, and local policies and regulations that positively impact people with Down syndrome across the country and affirm their human rights. Through grassroots advocacy, we empower community advocates to work with Congress and federal agencies, as well as state and local officials, to develop and improve policies and regulations for the benefit of the Down syndrome community. We also host our NDSS Down Syndrome Advocacy Conference in Washington, D.C. The NDSS legislative agenda spans the life of individuals with Down syndrome from birth to adulthood including health care, education, employment, and economic self-sufficiency.
NDSS community engagement events and activities celebrate our loved ones with Down syndrome, raise awareness among the public, and connect individuals and families within the community. Through our scholarships, grants, and awards program, we support individuals with Down syndrome in pursuing their dreams. Since 1995, the National Buddy Walk® Program has promoted awareness and inclusion of people with Down syndrome and raised funds for local and national organizations that support the community. NDSS hosts awareness and engagement events throughout the country including our New York City Buddy Walk® and Times Square Video presentation, Racing for 3.21 on World Down Syndrome Day, Run for 3.21, gala and golf events, and more.
Modern Medicaid Alliance: October is Down Syndrome Awareness Month (DSAM). What is the mission of DSAM, and how is NDSS celebrating the observance?
NDSS: October is one of NDSS’ favorite months of the year! In the 1980s, NDSS participated in the efforts to have October proclaimed, “Down Syndrome Awareness Month,” or “DSAM,” and this designation continues today. It’s a month to raise awareness and celebrate our loved ones with Down syndrome. DSAM seeks to break down barriers and focus on promoting advocacy for people with Down syndrome. NDSS celebrates October in a different way each year and we invite you to get involved and spread the word. Use #DownSyndromeAwarenessMonth to post on social media, and don’t forget to tag NDSS so we can share your post.
Modern Medicaid Alliance: This year also marks the 45th anniversary of NDSS. What are you all doing to recognize this exciting milestone, and how do your DSAM efforts fit into this broader strategy?
NDSS: For 45 years, we have been working to ensure all individuals with Down syndrome are assured their human rights and valued by a more inclusive society. Learn more about our history here. We have a few more exciting announcements coming soon, and we will continue the celebrations into February when we host our Annual Gala & Auction honoring 45 years of impact.
—
To learn more about NDSS, visit their website.