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How You Can Advocate for Individuals With Down Syndrome

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Supporters of the Down syndrome community are by definition a fierce group. Parents and allies often will do anything to create a better path for their loved one with Down syndrome. The need for grassroots advocacy training and guidance is even more important with current political threats to supports and systems (like healthcare, education and employment) that people with Down syndrome rely on. Now, the National Down Syndrome Congress is giving you one more way to advocate.

NDSC Convention in Washington, D.C.

Today NDSC rolled out the National Down Syndrome Advocacy Coalition or NDAC. The coalition will be a nation-wide, grassroots group of self-advocates and allies, working together to support policies that benefit the Down syndrome community. The program hopes to train volunteers to effectively engage with lawmakers and other change-makers to promote positive advances for our loved ones with Down syndrome.

“NDAC will provide a formal mechanism to engage individuals — regardless of level of advocacy experience — in these efforts in order to maximize the power of our community’s voice,” explains NDSC executive director, David Tolleson.

There will be 3 levels of membership, and advocates at any level of experience (or no experience) can get involved:

1. NDAC Members.

Volunteer advocates of all abilities and levels of experience. There is no selection process to be a NDAC member, but you will need to be a NDSC member first (if you attend the NDSC convention you’ve already paid the $50 annual membership fee). Find out what other benefits you receive with an NDSC membership and sign up here.

2. NDAC State Leaders.

Volunteer advocates with more experience, who will serve as the main grassroots organizers for their state. NDSC hopes to have two to three advance advocate organizers per state. NDSC will be rolling out this level of membership in the new year, and state leaders also must be NDSC members.

3. NDAC Group Members.

These are local, state or national groups that can be Down syndrome specific, but also cross-disability groups that want to help with outreach and sharing information. The fee for group membership is $20, and entitles one group representative to be the point of contact for NDAC. The group fee is waived if the group is already an NDSC affiliate.

Chris Newlon and her 14-year-old daughter, Rebecca

Long-time advocate, Chris Newlon, who’s 14-year-old daughter, Rebecca, has Down syndrome says the more training opportunities to advocate the better, “Advocating isn’t specific to one organization or group. Nor is it only for politicians or educators. The more we advocate the better, from helping little kids on the playground figure out how to approach a nonverbal child to speaking with our congressmen. Our goals, our focus, is to make the lives of those with disabilities not seem so ‘alien’ but just part of life itself.”

NDSC Policy and Advocacy Director, Heather Sachs, will be heading up NDAC and says she’s excited to encourage advocates of all levels to find their voice: “NDSC has been involved in advocacy for decades, but we have really established ourselves as the leading voice on issues such as education, Medicaid, health care, transition and employment policy over the past year. We did a massive amount of outreach and grassroots organizing during the health care and Medicaid battles over the summer, and those efforts laid the groundwork for NDAC. There is a clear need and desire for more grassroots advocacy training and opportunities in our community.”

Want to apply to be a NDAC member? Click here.

Are you a NDSC affiliate or cross-disability group and want to join arms with NDSC? Email

NDAC State leaders can start applying in January of 2018.

“We encourage everyone to become a member of NDAC and ask your family and friends to join as well. Given the constant threats to Medicaid, health care, education and employment, the NDSC policy team needs help from a large grassroots army to advocate for equal rights and opportunities for people with Down syndrome. Join us!” Sachs says.

Follow our journey of advocacy and inclusion at

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Originally published: November 20, 2017
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