My Advocacy Journey…and My Mission to Help You on Yours

Heather Sachs, NDSC Policy & Advocacy Director

Thirteen years ago, my husband and I were given the news that so many of you have also heard – your baby has Down syndrome. Ours was a delivery room diagnosis (and unfortunately not delivered in a sensitive way), and we were left in complete shock and confusion. We were expecting a healthy baby girl and didn’t even really know what Down syndrome was, and our lives were suddenly placed on a completely unanticipated and unclear path.

Heather and daugther with DS

With the support of national organizations like NDSC and our local Down syndrome group, we began to adjust to our new reality. We plunged into the world of heart surgery, early intervention, private therapies and we started learning about the potential personal and systemic challenges that our daughter could face.

I am an attorney – but I had never taken a disability rights law class. I had practiced entertainment law in Los Angeles – I could draft a movie production contract, but I did not have any knowledge applicable to our new situation. Education rights, discrimination against people with disabilities, how the school system worked, or what transition was, how Medicaid and other benefits could help my child – I knew NOTHING about these topics. I also never worked on Capitol Hill and didn’t have much knowledge about how state and federal government worked beyond the political science courses I took in college.

Like most of you, I was overwhelmed- I knew I was going to have to fight for the best life possible for my daughter, but I didn’t know where to start. I stepped out of my comfort zone and signed up to attend a local governmental affairs advocacy training workshop led by NDSC’s very own Ricki Sabia, Stephanie Smith Lee, Susan Goodman and Madeleine Will. I joined other parents from across the state of Maryland to learn about how to advocate in Annapolis and Washington DC, the importance of working in coalition with other disability groups, and how the legislative process worked. At this training, a state legislator gave a speech about how to become an effective advocate, and his resounding message was to “tell your personal story.”

As a result of this training session, the Maryland Down Syndrome Advocacy Coalition (MDAC) was created. I was one of the least experienced parents there with the youngest child– my daughter was still very young and not even in the school system yet. I marveled at how the other parents seemed to have so much more knowledge and expertise of laws and policies that affected people with Down syndrome. I was like a sponge, taking it all in, and I found that connecting with other parents who were farther along on this journey was the most valuable teaching method of all. Hearing their advice, learning from their experiences and going to meetings in Annapolis with them to watch them “in action” talking with legislators was more instructional than anything I could have read in a book or online. Many of those parents – including the presenters – are still my mentors today.

Slowly but surely, as the years passed by, I became one of those “experienced parents” who tried to pay it forward by encouraging others to become advocates and tell their personal stories to effect legislative change. When I joined the NDSC staff in Fall 2017, it became one of my top priorities to establish a grassroots advocacy program and provide opportunities for training like the one I had attended in Maryland more than a decade ago. In November 2017, NDSC launched the National Down Syndrome Advocacy Coalition (NDAC), a grassroots advocacy coalition that has grown to over 270 members today. In July 2018, NDSC offered its first Advocacy Training Boot Camp at the Convention. We had a packed room of 175 parents and self-advocates, many of whom considered themselves to be novice advocates who had taken advantage of this unique opportunity to begin their advocacy journey.

On Thursday June 27, NDSC will offer the second Advocacy Training Boot Camp at the Convention in Pittsburgh. Attendees to Boot Camp will hear from experienced parents, self-advocates and legislators. This half-day program is free to all Convention attendees; all you have to do is register.

I know firsthand that this Down syndrome journey is beautiful, heartwarming and enriching, yet I also know that there are many bumps in the road and it often seems like “the system” is stacked against us. Becoming an advocate is the best way that you can make positive change – both for your own loved one and for all of ours. Hope to see many of you at Boot Camp where we can learn from each other and strengthen our collective voices.