Exclusive Interview with Down Syndrome Alabama Executive Director – Missy Haughery

Down Syndrome Alabama, established in 1987, is the leading champion in its state for individuals with Down syndrome. Recent initiatives include their CHAMPS program, providing social and education opportunities to post-secondary students,  their EDGE UP learning program for schoolchildren, and their HEADS UP program, which teaches meaningful advocacy to elementary students.

GLOBAL Vice President – Strategic Alliances, David Tolleson, met with Melissa “Missy” Haughery, M.S., Executive Director of Down Syndrome Alabama, to learn more about the organization, its recent initiatives, and more.

DAVID: Tell us a bit about yourself and how you got involved with Down Syndrome Alabama?

MISSY: I am an educator. I was a 12th grade English teacher for 26 years. My goal was to become a middle school assistant principal. However, when I became pregnant with twins – one of whom has Down syndrome – and I realized that I would have 3 children under the age of 3, I realized that I may have to push my professional goals back a bit. As time went on, I realized that being at basketball games until 8 pm probably wasn’t the wisest choice for my family, so as I neared the 25-year mark, I decided it was time to come out of the classroom. I loved teaching, but it was time for a change. The DSA Executive Director job came open and my husband encouraged me to apply. I didn’t want to, because I thought it should be someone outside of the Down syndrome community, because I thought it might be hard for folks to distinguish between my professional life and my personal life as a mom. In late summer of 2022, I submitted my resume, and I started in March of 2023. My master’s degree is in educational leadership, so instead of leading a school, I’m leading an organization that educates people.

DAVID: Tell us a bit more about Down Syndrome Alabama.

MISSY: Down Syndrome Alabama has been around since the late 70’s/early 80’s when it was formed as a parent advocacy group. Parents felt like if they came together, they’d have a stronger voice. They incorporated under the name PADS – Parent Advocacy for Down Syndrome. It was a parent-run, mom-and-pop organization that grew very organically, but very quickly. In 2012, they changed the name to Down Syndrome Alabama, and it became a shift from mom-and-pop to a more professionally run and led organization. As was the case with many organizations, 2020 led to quite a bit of change with a new Executive Director who implemented a lot of policies and procedures to continue the growth and expansion into some satellites and that’s where we are today.

 

DAVID: Last year, Down Syndrome Alabama received DSAIA’s “Affiliate of the Year” Award. Tell us a bit about that recognition and what it means to you.

MISSY: That recognition was amazing, and we weren’t expecting it at all, especially since I’d only be in the role for a year. One of the main things we talked about was a program that we’d introduced where we partnered with an artist named Carolyn Lewis. She created a piece of art named an empowerment bird. It came about because we have our new parent bag with things for the baby, but I thought we needed something for the parent that says, “Hey, you’ve got this. It may be tough, and it may not be the road you planned, but you’ve got this.” We were able to create smaller replicas for our parents. When I met with the artist, the piece became more special, because she was inspired to become an artist by a boy she used to babysit who had Down syndrome. We had the boy, who is now an adult, at the unveiling. It was a surprise for him and his family, as the artist explained how he inspired her work.

We have our new parent outreach and our CHAMPS program, which provides post-secondary adults with social and educational opportunities 1 to 2 times per month. For example, we have a self-defense class taught by the Hoover, AL, Police Department, because what could be more empowering than to feel safe and confident? As we are growing in society and things like Ubers are going to be used more frequently by people with Down syndrome, what are those safety measures they need to be aware of in those situations?

We also have a program that is funded through a GLOBAL Education Award, which is our LACE UP program. It is a “Couch to 5k” running program for adults. We’re hoping to expand that to younger kids and caregivers, because having everyone in the family involved is important for long-term adoption of an exercise program by self-advocates. We want to get them off the couch and moving however they can, whether that’s walking or running. We’re proud to have Daniel Chaplin, a self-advocate who has run half-marathons in all 50 states, as a part of our group. Not everyone is as athletic as Daniel, but if we can get everyone a little closer to his level – even if they’re not running marathons – wouldn’t that be great?

We also have an educational program to help schoolchildren with Down syndrome meet the criteria they’ll need to participate in a post-secondary program like Auburn’s Eagles Program, ClemsonLIFE, or the Access Program at Mississippi State. Additionally, we have our HEADS UP program, where we go into elementary classrooms or to Cub Scout or Girl Scout groups to teach younger generations about how to be an advocate. HEADS UP actually stands for “Helping Everyone Advocate for Down Syndrome”. We teach them at a level appropriate for their age, because everyone can advocate, and then leave them with a book for their classroom and a certificate and a bow for their door.
My personal philosophy for our organization is “see us, know us, love us,” because I feel the more we are seen in society, the more people will get to know us, and then they’ll come to love us. I try very hard to make sure that when we have programs or activities, we do them in public places.

DAVID: In addition to your many great programs, you also have a very unique fundraiser!

MISSY: Yes! We partner with Clyde May Whiskey for a bourbon and spirit tasting event. Clyde was a bootlegger who went to prison for making and selling alcohol illegally, but he also had a daughter with Down syndrome, and he raised her in his home with his other children at a time when society believed it best to do otherwise. So to the Down syndrome community, Clyde May was a trailblazer. Clyde’s grandson comes to the event, tells stories of the label and of his grandfather’s love for his daughter, Debbie. This year, we elevated the event to include a guest bartender, Wilson Taylor, a young man who has Down syndrome, because bartending is empowering! The story gets even better because the CEO of the Clyde May brand also has a daughter with Down syndrome. Pretty cool.

DAVID: Cool, indeed. As is the fact that you have a new Down syndrome clinic forming in Birmingham! How is Down Syndrome Alabama supporting that effort?

MISSY: The plan is for it to be a lifespan program but they’ve started with pediatrics earlier this year and already have patients scheduled through June, which shows the level of need. Patients can see a pediatrician, audiologist, psychologist, and speech therapist, as well as a social worker who can help advocate for appropriate supports in the school setting. They’re working on getting an OT, cardiologist, and endocrinologist. The clinic is through the University of Alabama – Birmingham (UAB). My hope is that from here, UAB will jump on board with Down syndrome research. We support their work, and they will be giving out our new parent bags, which is great, because the parents might not know to call us. The clinic will also be offering a family summer camp weekend that we’ll play a role in. It will be a great opportunity for families to connect with one another – it’s huge to meet others who are in your shoes. As a parent, I’ve always thought it’s important for my children without Down syndrome to meet other siblings, because when I’m long gone, they’ll need a support system.

DAVID: Tell us about your experience with GLOBAL’s DeOndra Dixon fly-in.

MISSY: It was an experience that was educational and one that I never thought I would do. When we arrived Tuesday and met with the GLOBAL staff, it was empowering and taught me so much about what to do and the purpose of our visit, that it gave me the confidence that I needed the next day to go meet with our Senators. The Davis family went with us and Grace, who has Down syndrome, is a recent graduate from the Auburn Eagles program. I asked Grace and her family to come, because of her connection to Auburn, where Senator Tommy Tuberville used to be head football coach. Coincidentally, Grace’s mom grew up dancing with our other senator, Katie Britt, which was a great connection. They also felt so empowered after our meetings with the senators.
GLOBAL’s Congressional briefing was amazing – standing room only! I was sitting next to a staff member from Minnesota who said, “I heard Jamie Foxx would be here talking about Down syndrome and what could be better than Jamie Foxx and Down syndrome?!” Then, as we were leaving, we saw JD Vance and I thought, “Oh my gosh, he’s the Vice President-elect!” Grace did an amazing job making the Auburn connection with Senator Tuberville and then spoke eloquently to Senator Britt about herself and her accomplishments, but also spoke about her fears, some of which are medical issues. After Grace finished speaking, Senator Britt looked at her and said, “Grace, I would be honored to co-sponsor this bill for you.” We were so excited! I felt like we flew up to DC, did our job, and it was amazing! It was very validating knowing that we had worked hard and done something right. And, of course, what could be more fun than ending the night with Jamie Foxx singing “Push it” by Salt n Pepa, while everyone was dancing? It was one of those out of body experiences! Nothing I could’ve ever imagined doing!

DAVID: We are grateful that Down Syndrome Alabama is supporting the project to update and expand the GLOBAL Adult Guidelines with a generous multi-year pledge. Why is this project, GLOBAL’s research and medical care work, and our Washington, DC advocacy important to you and the families you serve?

MISSY: One of the biggest calls I get is from people who say, “I need to find a doctor who will see my adult with Down syndrome.” I think that if we’re not able to educate every physician on Down syndrome, we need to at least be able to educate the families to say to their physicians, “here are the Guidelines and I need you to do what’s on the checklist.” To me, that’s just the easier route to ensure better healthcare for people with Down syndrome. Down syndrome is delightful, but it’s the medical issues that can be the hard part. You can’t control health in the same way you can control educational access, for example. The 21st chromosome contains many mysteries. I believe GLOBAL’s work will unlock these mysteries not only for people with Down syndrome, but for all of us.

DAVID: Is there anything else you’d like to share?

MISSY: I feel like we as a community are being seen more and progress is being made, but so much more needs to happen. I’m so proud to be a part of this and I hope that in a few decades, some of the things we celebrate will not need to be celebrated because they’ll be the norm. It’ll be the norm that you have an adult with Down syndrome working for UPS and not a celebration because he’s the only one.

DAVID: Thank you, Missy!

MISSY: Thank you to everyone at GLOBAL! You’re amazing people doing the work you’re doing.

Recent Posts