Kim Owens

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 Unfortunately, outdated laws related to benefits, including laws sometimes known as the “marriage penalty,” have created a system where she and/or Craig would have to forfeit much of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.