Feature Story

Since her daughter Annie was born with Down syndrome 11 years ago, Sarah Hardin has been involved in policy advocacy. Sarah first became involved with a local moms’ group. Eventually, Sarah became involved in advocacy with the Arc of Beaumont County. Then, she was hired as the Public Awareness Coordinator for child find. 
 
Sarah says she joined the National Down Syndrome Advocacy Coalition (NDAC) so she could stay updated on all things important to people with Down syndrome. She feels she is connected and better able to advocate for her daughter and others with Down syndrome. Sarah says an important benefit of being part of NDAC is the connections you make. “Someone out there has experience with what you are going through and can give you direction.” Her advice to beginner advocates: “Tell Your Story.” That is what will make an impact and make you memorable to that legislator or staffer. Create a new relationship with your story.” 
 
These days, Sarah is the Executive Director of the Arc of Beaumont. Sarah says, “I get to have fun every day through all the social, educational, and support programs that we have for adults and children with IDD and their families in our area. Annie’s birth was truly a “diamond in the rough” experience because it opened my eyes to an amazing population of people whose lives are full of value!” 
 
Along with their daughters Emma, Annie, and Claire, Sarah and her husband Ronnie make their home in Beaumont, Texas. Thank you for your advocacy and for sharing your story, Sarah.

Lauren Devard, 22 of Bear, Delaware, is a Food Runner for the Trabant Center Greens to Go at the University of Delaware Food Court. Her employer is Aramark. Lauren fills customer orders by matching customer meal tickets to prepared items and bagging them with utensils and related items. Lauren then notifies customers via a tablet device that their order is ready. If there is an issue, she (with the help of her job coach) works to resolve it.  Lauren loves doing a good job and meeting so many different people; but her favorite part is the free custom salad and wraps. Lauren uses some of her earnings to go to concerts, plays and other special events. She also likes to buy art supplies, eat out, and employs a personal trainer. 

Lauren’s mom, Samtra, adds: “Lauren’s Journey is so exciting. Lauren is brave and makes the most of every opportunity that she is blessed to have. Lauren’s enthusiasm and resolve to do her best at her job is evident. Lauren gets to experience the dignity of work. I talk to families who are discouraged because their focus is on what their loved one with Down syndrome can’t do. I was there. But I want to encourage families that there is hope, and there are resources. It feels risky. But it is worth the risk. It is fulfilling to see how Lauren’s confidence and skills have grown.” 

Thank you, Lauren, for sharing your employment story, and thank you Samtra, for those encouraging words that we all need to hear from time to time. 

May’s National Down Syndrome Advocacy Coalition (NDAC) featured members are 18-year-old Petra Mark and her mom Nancy Spanski of Michigan. Petra is our first self-advocate NDAC member from Michigan! Petra says, “As a person with Down syndrome, I am interested in making the world a better place for people with Down syndrome.” She goes on to say that she felt it was important to join NDAC because she likes speaking up for herself on important issues. She believes is important to be part of NDAC to stay informed. 

Nancy is a long-time member of NDAC. Nancy says, “I was inspired by the collaborative effort of advocates to be effective on a variety of issues. I also appreciate the support and advice when I am working on state and local issues.”   

Petra and Nancy’s advice for beginners is the same. “Don’t be afraid to introduce yourself, believe in what you do and always stand up for yourself. Start where you feel comfortable, which could be an email or phone call to your legislator. “ 

Petra recently had breakfast with her state legislator and invited him to meet with her at the state capitol. She says, “It was good to get to know him, and I plan to keep in touch with him and also meet with my US Representative and Senator.”

Petra, Nancy, brother Ian, and Dad Chris are a farm family. Petra, a decorated 4-H member, shows rabbits, chickens, and goats in 4-H. Petra says one important thing she wants you to know about her is that she is graduating in May with her diploma! 

Petra and Nancy, thank you for your advocacy and sharing your story.

Learn more and/or join the National Down Syndrome Advocacy Coalition here.

Elyssa Schmitz, 26 of Denver, Colorado, has two jobs. As a Courtesy Clerk at King Soopers, Elyssa is responsible for engaging with customers, bagging groceries, and gathering carts from the parking lot. Her pet peeve is when people do not place the carts back in the corrals and not just at King Soopers but anywhere! Elyssa works at King Soopers four days a week and has been there for seven years.  

If you meet Elyssa, you will know that her second job as a Happiness Ambassador for Spire is a perfect job because she has a gift for engaging and connecting with people and making them feel valued. She escorts visitors to rooms, brings drinks to visitors, and does data entry. She is included in company outings, gatherings, and holiday parties. Elyssa also invites her co-workers to dances, and recently, four of her Spire coworkers joined her for a Global Down Syndrome Foundation “I Love You” dance party. She works at Spire one day per week and has been there for three and a half years.  

Elyssa likes to spend her money on clothes, coffee, and skin care products! Sometimes she buys mom flowers and dad chocolate!

Elyssa stays busy with her many social and church activities, traveling, and going to the gym. She refers to her living room as her “Country Gril Howdy Ya’ll Cave” and spends her spare time singing. Thank you for sharing your story, Elyssa. 

Heather met Craig Blackburn, of Louisiana, at an NDSC Convention. They became boyfriend and girlfriend. As their relationship grew, they dreamed of being legally married and living together. Unfortunately, outdated laws related to benefits, including laws sometimes known as the “marriage penalty,” have created a system where she and/or Craig would have to forfeit much of their financial assistance to be legally married and live in the same state. She and Craig opted for a commitment ceremony and consider themselves married, but Heather says this is disrespectful and wrong. “I just want to live in my own house, in the same state with my husband Craig.”  

While Heather and Craig hope their dream of living together in the same state comes true soon, she has not allowed that issue or Down syndrome to slow her down. Among her many activities, she is a Special Olympics athlete, an NDSC Self Advocate Council Member, and works two jobs, one at Not Your Average Joe and the other at the Oklahoma Department of Special Education. Craig is also very active, including in his roles on the NDSC Board and as an NDAC member. She and Craig communicate regularly and meet up as often as possible

Heather invites anyone who wants to join her in advocating for people with Down syndrome to join the National Down Syndrome Advocacy Coalition.  

National Down Syndrome Congress (NDSC) Executive Director, Jordan Kough joined the NDSC Policy Team including Director of Policy and Advocacy, Cyrus Huncharek, Senior Policy Advisor Stephanie Lee Smith, Grassroots Advocacy Manager Jawanda Mast, and Policy and Advocacy Associate Chapman Bryant, for meetings on Capitol Hill with Congressional offices and key committee staffers to discuss NDSC policy priorities for the Down syndrome community. The NDSC staff was joined by Madeleine Will, former Assistant Secretary of Education for Special Education and Rehabilitative Services and NDSC Policy Council member, and Madison Essig, George Mason University graduate, NDAC member, and self-advocate. 

The group met with several offices in the United States Senate, the United States House of Representatives, and key officials (Valerie Williams, Director, Katherine Neas, Assistant Secretary, and Meghan Whittaker, Special Assistant) with the Department of Education’s Office of Special Education and Rehabilitative Services (OSERS) to advocate on behalf of people with Down syndrome. The meetings included advocating for the Congressional Public Policy Agenda for the 118th Congress. The policy team’s main priorities included employment, education, social security, and eliminating restraint and seclusion. Furthermore, advocating for increased Individuals with Disabilities Education Act (IDEA) funding, eliminating the marriage penalty for people with Down syndrome and other disabilities, and ensuring a higher wage does not correlate to loss of Social Security benefits or Medicaid.  In addition to the main priorities, the policy team asked members of Congress to join the recently registered Congressional Task Force on Down Syndrome in order to build membership to increase Capitol Hill awareness and action on Down syndrome specific issues. 

Noah Bradshaw, 21 of Elkton, Maryland, works as a busser at Grain Craft Bar and Kitchen and Jimmy John’s, both in Newark, DE. Noah has the typical job duties of wiping down tables, and menus, sweeping, prepping silverware, and refilling empties. Noah uses his earnings to pay rent, for his gym membership, and his Knockout Boxing training with Coach Jon. Noah says,” I just bought myself new headphones. I like to save money more than spend it.” Noah’s favorite thing about his job is spending time with his co-workers and meeting new people.  

Noah is pictured with Kellie Boyce and Kathleen McCormick, both Down Syndrome Association (DSA) of Delaware staff members when they had their staff lunch at Grain Craft Bar. Noah also worked closely with these staffers during his internship at the DSA of Delaware Café.  His internship helped prepare him for the jobs he works in now. Noah has had successful supported employment in his current jobs and when he worked for Starbucks. Thank you for sharing your employment story, Noah.

Ready. Set. Action. Marissa Erickson, 31 of Alameda, California, loves the freedom of making her own schedule, earning competitive wages, and traveling to different film and set locations. Marissa has worked on projects for Apple TV +, Disney +, and several large-scale film productions where she thrives working in craft food services, locking down sets, managing extras, assisting the prop department, equipment set up, and delivering requested items to cast and crew. 

Marissa received a certificate from the Wayfinders’ program at Fresno State and currently attends the Futures Explored Film and Media Studios.  As a freelance production assistant, she has the flexibility to pursue training in the film industry and work at the job she loves. Marissa says, “Being on set is so exciting and my co-workers become family. I love the job perks like travel and food per diems.” Marissa attended the 2022 Emmy Awards with her favorite co-worker, Hannah. Hannah says, “Working with Marissa for Apple TV+ was life changing. She is a dedicated and hard worker who brings so much life and positivity to the set.” 

Marissa’s long-term dream is to work for Disney Studios on a Marvel feature film. Thank you for sharing your employment story, and best wishes on pursuing your Disney dream!

You may know featured NDAC member Kayla Schadegg from her “Strong Over Wrong” platform. Kayla joined the Down syndrome community when her daughter Kerrigan was born with Down syndrome six years ago. At 24, Kayla had a birth diagnosis and it was not the “ideal” delivery of the news.

Kayla has used this experience to develop her platform for pageant competitions. She says, “think Miss America but for married women.” Contestants are encouraged to create a platform that community efforts are centered around. It was clear to her that Strong Over Wrong, which aims to create a more compassionate and research-backed diagnosis experience for families across the world, was the platform that would give her the biggest voice. Kayla believes NDAC is a perfect way to strengthen your skills as an advocate no matter what “stage” of advocacy you’re in. In addition to Kerrigan, Kayla and her husband Kelly are parents to Knox, age 1, and make their home in Topeka.

To learn more, check out Kayla’s video on why you should join NDAC.