Exclusive Interview with Down Syndrome Association of Jacksonville Executive Director Debbie Revels

Prior to her retirement last month, Debbie Revels led the Down Syndrome Association of Jacksonville for 36 years. Under her leadership, DSAJ has grown into one of the nation’s premier local Down syndrome organizations.

In March, GLOBAL Vice President – Strategic Alliances, David Tolleson, caught up with Ms. Revels to talk about reflections on her career and why she’s not done contributing even as she transitions into retirement.

DAVID: Tell us a bit about yourself and how you got involved with the Down Syndrome Association of Jacksonville?

DEBBIE: In 1986, our son, Nick, was born and received a postnatal diagnosis. I was a very young mom, and he was our first baby, so the diagnosis was unexpected. What was odd about that situation is that I knew nothing about Down syndrome. What was tragic was that neither did the doctors, so they used all the words we no longer use to describe people with Down syndrome. Of course, there was no Google or even cell phones back then, so how we found others with children with Down syndrome is amazing, but 5 area families did find each other in the ensuing two years. We all had a horrible experience with both the diagnosis and a lack of support. So that was the impetus for the founding of DSAJ. We started with medical outreach to ensure healthcare professionals would no longer say the words that were used to describe our babies and to educate doctors that these are lives worth living and that have value. I became Executive Director in 2008. It’s been almost my entire adulthood and it’s been beautiful because I’ve seen the growth in local and national resources. There used to be nothing here and when you see that growth there’s a deep amount of pride and inspiration that comes from that. On the personal front, we have four children and seven grandchildren, so that keeps us super busy and, thankfully, Nick is happy and leading the life he wants to lead.

DAVID: What accomplishments are you most proud of during your tenure as Executive Director.

DEBBIE: There are three that jump to mind. First is our new parent outreach. I love holding all those babies! For my entire tenure as Executive Director, I’ve held onto that role, because I love it so much and I can relate to how the parents are feeling. When my retirement was announced, those were the remarks I received the most – “you were there when I needed you”, “I remember when you came to our home”, “I remember when you walked into the hospital”. I have so many stories of when someone had their termination appointment set for, say, a Wednesday, and I spoke with them on Monday and they changed their mind – not because of me, but because I could tell them the stories of the beautiful human beings with Down syndrome I know. I’m very happy that I was able to give people hope that it’s going to be okay and it’s going to be beautiful.

In addition to that, we launched an employment program five years ago. I only know of a handful of affiliates that have one. We’ve had such success with it. I’m always encouraging other Executive Directors to look into it. It’s not as scary as you think and it’s so successful! I think that comes from having known these children since birth and then seeing them grow up and graduate and then have to go out into a world that doesn’t know them, their personalities, their goals, their strengths, or their family dynamics. To be able to still nurture them on their journey by offering this program was ideal. I’ve seen our success, and the program is continuing to grow. I’m glad we ignored the fear of failing and embraced a new opportunity to serve.

Then definitely our work toward establishing a medical outreach enrichment center. It won’t be our program, but DSAJ will have a voice at the table and will support it financially. It’s still a vision, but I know in my gut that it’s going to happen.

DAVID: But you also had success on the residential front…

DEBBIE: Yes! We collaborated with The Arc Jacksonville with this residential program and spent time and money from our budget to ensure that it was built. The Arc couldn’t do it alone, so we spent years at our state capitol advocating for the need for a residential community then took money from our budget to help build it. It’s a model that can be used across the nation. Truthfully, some of the motivation was for my son. He still lives there independently and loves it. They have a waiting list of more than 100 people, it’s that good. DSAJ supports and collaborates with other associations locally and across the globe and I encourage other people to do the same.

DAVID: Along those lines, you’ve been actively involved on the national scene, and have been very supportive of GLOBAL’s research, medical and advocacy work, the project to update and expand the Adult Guidelines, and particularly as part of our Membership Advisory Board. Why is it important to you to be involved beyond the local level?

DEBBIE: Because we can’t do it all ourselves. The local groups can’t touch everything that needs to be touched. We don’t have the time, talent, or treasure to do it. The folks at GLOBAL are my people. You are doing things that no one else is doing or if they are doing it, they’re not doing it as well. I believe you stay in your lane well and stay focused and don’t get distracted. I love watching progress and I’ve seen it with GLOBAL. For example, the Adult Guidelines. Who would’ve thought those ever would’ve been published? So many organizations do the same thing over again or do something new that isn’t really needed or impactful. GLOBAL saw a critical need for adults and didn’t give up on it even though it was difficult. I was with a group of doctors just yesterday and they didn’t know that autoimmune issues are such an important part of our people’s lives. They don’t have a clue. And, what’s the point of living into your 60’s and 70’s if you don’t live well and aren’t happy? GLOBAL is actively working on that.

So back to your question, being involved on a grassroots level with the important things happening on the national level gives a great feeling of pride. It’s also nice that GLOBAL appreciates us and the work we do locally.

DAVID: You’ve always been such a dynamic, active leader that I can’t imagine you sitting on the sofa knitting. How do you envision your retirement and what are you most looking forward to?

Well, I’m not retiring from the disability community. I’m going to spend my passion and talents in a broader way and really focus on the adult population, their needs, particularly medical needs here in Jacksonville. Having more time to support the initiatives of the national groups is also my passion and part of my vision for the future. A Board member told me that volunteering is in my DNA. I hadn’t thought of it, but it really is. Having a child with a disability teaches you a new language and introduces you to a new community. And it doesn’t just change your life, it impacts your family, who also become givers and volunteers in this community.

I’m going to stay actively involved in all the efforts of the national groups. Everyone needs to be supporting federal advocacy now more than ever. I’m excited to be attending GLOBAL’s AcceptAbility Gala in Washington in May, because the outreach to Congress and the National Institutes of Health is important. I’m a mom first and foremost, and an advocate, and I want to support all your efforts. I’m retiring as Executive Director, but I’m retiring from the community!

 

DAVID: That’s great news for all of us! Any closing thoughts you’d like to share?

This has been a beautiful season of life and I’m so incredibly grateful for having this be a part of my journey. I wouldn’t have chosen it. When I was young, I didn’t say I wanted to have a son with Down syndrome and be an affiliate Executive Director. But it has been a wonderful experience. Still, I’m looking forward to what comes next. Already, I’m getting outside more and enjoying long walks in the morning – one of the advantages of living in Florida!

 

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