NDSS is the leading human rights organization for all individuals with Down Syndrome. We advocate for federal, state and local policies on behalf of people with Down Syndrome across the country.

Advocacy is a powerful way to influence change by making your voice heard. Through NDSS’ grassroots advocacy programs, we encourage everyone with a connection to Down syndrome to become an advocate.

The most impactful voices are those of individuals with Down syndrome, or self-advocates. By sharing your story, you can ensure a brighter future for all individuals with Down syndrome.

Advocacy 101

What is Advocacy 101?

The purpose of Advocacy 101 is to provide advocates with the necessary resources to become inspirational advocates. This will include trainings, practices, and opportunities to get involved with NDSS as well as with the community at large. Self-advocates can focus on community integration, contribute to conversations, and get involved through opportunities presented below. Guidebook coming soon.


What does Advocacy Mean?

Advocacy means finding your voice and being able to share it with others. We all use self-advocacy to educate and inspire change. Sometimes when we are out in public people may have preconceived notions about us. This can be from behaviors caused by past stereotypes to policies affecting us as people with Down Syndrome. That is the key element when we advocate for ourselves and others.


How can I get Involved?


#DSVOTES® is an initiative by Self-Advocate Becoming Empowered (SABE) to support Self-Advocates in encouraging political participation and provides materials and trainings on voting.

  • You can get involved by registering to vote as a role-model for people with disabilities learning the process to vote. Learn more here.
  • View SABE’s website and voting information



The goal of #DSWORKS® is to encourage corporations and businesses to invest in hiring people with Down Syndrome; and increase the number of opportunities for individuals with Down Syndrome to work in meaningful and competitive employment settings.

#DSWORKS® is an opportunity for Self-Advocates, community members, and elected officials to come together to increase the employment rate for people with disabilities while ensuring businesses and corporations are financially secured.



DS-AMBASSADOR® is an opportunity to build relationships with your elected officials at the federal, state, and local level of government to continually raise awareness, educate and advocate for public policy solutions that help the Down syndrome community.

Self-Advocates can get an opportunity to inspire social change to elected officials by sharing personal stories. This can benefit people with Down Syndrome.

  • Anyone who wants to be involved as a DS-Ambassador® can learn more here.

Resources by Self Advocates

Kayla’s Korner by Kayla McKeon 

Kayla McKeon is the Manager of Grassroots Advocacy for the National Down Syndrome Society (NDSS) where she works to advance legislation beneficial to the Down syndrome community. She was named NDSS Self-Advocate of the Year in 2016 and joined the NDSS staff the following year.

If you’re interested in following Kayla, please listen to Kayla’s Korner. This is her take on blogs on employment, self-advocacy and many other topics. She also does podcasts where she has interviewed Members of Congress, Board of Directors, like Kandi Pickard of NDSS, CEO’s of Companies, like Tim Shriver with Special Olympics, and self-advocates. She likes to talk to them about the important issues we are currently facing, as well as what is important to them and what NDSS stands for.

David’s Dialogue by David DeSanctis

David is the Public Relations Outreach Associate at NDSS. In his role, he serves as a face for NDSS at various functions and events. David is an inspirational speaker and an actor and is thrilled to be able to use his talents to raise awareness for NDSS and Down syndrome!Within NDSS David advocates by writing blog posts, making playlists and creating video blogs on his page called “David’s Dialogue”. Through his blog post’s David speaks about employment, how to self-advocate, his experience with NDSS, and many other topics. If any of these topics interest you make sure to check out “David’s Dialogue”!

Magazine by Charlotte Woodward (coming soon)

The purpose of NDSS’s first ever Self-advocate magazine is to give awareness to the issues of Ending # Law Syndrome. It is packed with an inside scoop on the lives of people with Down syndrome throughout the U.S. It will feature submitted artwork, poems, essays, plays, and short stories. You can also find advice columns, and a NDSS calendar so you can stay up to date on NDSS social events! This magazine will show society that people with Down syndrome are ready, willing, and able to be a part of the community. Charlotte hopes you find it inspirational, positive, and meaningful.

Guidebook by Adrian Forsythe (coming soon)

One self-advocate at NDSS noticed a lack of resources for self-advocates, by self-advocates and wanted to inspire the next generation. This guidebook gives an original take on advocacy from the self-advocate perspective. Made for self-advocates, this resource provides different practices, advice, and skills. All of these helps to expand your knowledge on what self-advocacy is and how you can practice in your daily life.