Introduction
This is a record of an interview held with the CEO of the NDSS (National Down Syndrome Society), Kandi Pickard. This organization is the leading nonprofit human rights organization for all individuals with Down Syndrome. This is a paraphrased transcript of the interview, removing the pieces that complicated speech or other interruptions. This interview covers facts about Kandi Pickard, her journey to becoming CEO, and information about children with Down Syndrome.
Opening Questions
What got you interested in supporting the cause of children with Down Syndrome?
I have an eight-year-old with Down Syndrome, and when he was born, it was all new to me. He created an opportunity to be on my local group, then on their board, and start to learn. That really led the path to where I am at the NDSS today.
Is there anyone that stepped in and guided you when you climbing the ranks at the NDSS?
There was a mentor that I met. He sat on the board at my local group that I previously mentioned. His name was Tom O'Neil and he has a son with Down Syndrome named Josh. Josh is an adult who went to school and lived on his own. That opened my eyes to not only the amazing abilities of people with Down Syndrome, but opportunities to continue to learn and grow my knowledge of the community.
How long have you been working in this role and did you have to climb the ladder to get to CEO of the NDSS?
I did not, my background is more administrative. I worked in a hospital and law firm, doing a lot around different parts of the business. I had an opportunity after I had met the previous President of the NDSS when she was at Fort Wayne to speak about legal accounts. She mentioned she had positions open and my husband told me that I should apply because I would really enjoy it. And we had to move to Washington D.C. and I said "There's no way we're moving to Washington D.C.; we have four kids outside of Mason, there's no way." He kept encouraging me and encouraging and finally I applied and got the job. So, I started off as her personal executive assistant. I sat in that role for a little over a year to get my foot in the door. I then moved into the Chief of Staff role and I was in that role for another year and a half, finally becoming Senior Vice President of Development. I did a lot with fundraising until they allowed me to interview and I got the role of Chief Executive Officer.
Is there something that you're hoping to accomplish or influence that has been somewhat elusive?
The first thing I wanted to do was look at our adults. As we look at [my son] we want [him] to live [a] long [life] and have the opportunity to do that. Our community is now living so much longer than it used to. In 1985, their life expectancy was around 25 years old. Now they're living in the 60s and 70s. One of my goals is to look at that aging population and ask: How do we provide more resources to families and caregivers to be able to extend the life of people with Down Syndrome while also looking at other disorders, like Alzheimer's or Dementia, and showing them what the next phase of their life is gonna look like? We don't do a ton of research at the NDSS but we do have a lot of partnering organizations that do and we want to know how to provide research to people. How do we teach them about Alzheimer's when they start to see factors that look like it might be oncoming and help them through some of those next steps and be prepared for what's to come?
What obstacles or challenges have gotten in the way of you reaching some of your goals?
As an organization, the one thing about being a nonprofit is always fundraising; we don't get any government money. Most of the money we receive is given as a gift from individuals and organizers that do Buddy Walks, (A form of fundraising at the NDSS). We need to have enough money to do the things we want to do and staff that are willing to do the work that we need to do. We are always working hard to provide opportunities and resources for our community, getting their feedback on what they need. We're in Washington D.C. and we're working on policies to make the world a better place for people with Down Syndrome. We want to know what the people within our community are experiencing so we do a lot of listening and we take opportunities to hear if they're experiencing educational issues. We need to make education a priority for our organization.
What accomplishment has brought you the deepest satisfaction and why?
On a personal level, I have learned so much from families that have been down this road already. When I talk about Tom O'Neil and other families that I get to meet when I'm traveling, I really thank them for what they've done. I think that [my son] wouldn't have a lot of the opportunities for the life that he has if they wouldn't fight for inclusion in schools and basic human rights for our community. That is a big piece for me, to continue to do what they did and help folks with Down Syndrome who are just now being born to have a full life in front of them with infinite possible opportunities. From a professional standpoint, I think the best is yet to come. We’ve done great policy work as an organization and now we have accounts where people with Down Syndrome are able to save money tax-free without affecting their public benefits. I'm really excited to see what the future is gonna bring. We're gonna see a lot of momentum around employment and post-secondary education. We're gonna see more people with Down Syndrome go to college and have incredible opportunities. One of my colleagues that works with us has Down Syndrome, her name is Charlotte. She graduated from high school and goes to school in Northern Virginia. She's now going to George Mason and she's seven classes away from graduating with her Bachelor's Degree. She is fully included, taking the same college course that you and I would take and she is just excelling and doing amazing things. And to think we'd see more opportunities like that and see more people going on different paths. As I said, another thing I would like to see is life expectancy rising a little higher.
Central Questions
Many people have leaders in their field that they pay attention to. Who, in your area of expertise, is a thought leader?
There are a lot of great doctors and researchers in the Down Syndrome community that are making breakthroughs each and every day, helping individuals with Down Syndrome live longer and healthier lives. As I mentioned to you, as a parent, the parents and caregivers that came before me have always been tremendous thought leaders looking at education. As an organization, we learn that 43% of our staff actually have Down Syndrome, so we learn a lot from our colleagues and we really appreciate that they provide insight into programming, resources, and what our organization looks like going forward.
Do people with Down Syndrome often get excluded from “normal” social activities and, if so, do you have an instance of this that you’ve witnessed?
People with Down Syndrome get involved in social activities just as you and I would, and even though they may look and learn a little differently than you and I, we're all more alike than different. Most individuals with Down Syndrome like to participate in sports, art programs, and time with family and friends. There have been situations where folks haven't been included and haven't been able to keep up when it comes to baseball and other sports. Coaches feel like a different program or level of baseball would be a better option for them. We’ve seen families stand strong and tell them their child wanted to be with his peers at they're the same age. There's always a space and opportunity to learn and they pushed that level a little bit. He was able to participate on the team and found a role that fit him, bringing value to the team. [My son] wants to be with his friends and wants to do what they're doing and I'm sure [your brother] wants to do the same thing. If they're playing soccer, he wants to play soccer or whatever you're doing. When Mason started school, he went to two different kindergartens until we found one that would have him in the general classroom. We wanted him to be in a private or Catholic school because that's where his brothers and sisters went. It took us a little bit of time to really be able to find a good fit for him. It's been hard but worth the fight.
How has [your son] affected you as a parent?
[My son] has changed our lives, he's got two brothers and a sister that are all a little bit older than him; he's the youngest. He allowed us to appreciate each other and showed us that we learn at our own pace and accomplish things at our own pace. It's allowed us as a family to enjoy each other a little bit more and for [him] we're gonna get there when we get there and he's gonna do it on his own timeline. As you look at siblings and parents, sometimes there are unique challenges, but that allows for a great positive growth opportunity and good character development. I think my kids are better people because they have [him] as a sibling. They appreciate other people with differences much differently than how you would if you didn't have that personal connection.
How can you help include people with Down Syndrome?
If we look at anyone, including our kids, we realize that everybody wants to be included. For us, we always encourage people to meet somebody, introduce themselves, ask questions, and find out how similar they are. We often encourage folks to meet somebody. You can't judge somebody by what you see or expect. You need to introduce yourself and get to know someone. Sometimes that's hard to do and I'm sure it's the same for you, but [my son] likes to be with his older siblings' friends and whether they're playing video games or riding bikes he wants to be a part of it. [My son] has really allowed his friends to get to know him and to learn more about Down Syndrome and people with different abilities. Encourage people to get to know someone with a disability or with Down Syndrome before you judge someone that you don't know.
How can sibling of people with Down Syndrome help their brother or sister, whether it's with education or social inclusion?
Siblings can help encourage their brother or sister with Down Syndrome to become more independent. It's different depending on the age range but, for [my son], he's the youngest and when he sees his brothers or sisters doing homework after school he wants to sit down and do homework. If they're doing chores around the house it encourages him to do some of his chores as well. I think that siblings can be a huge influence on kids with Down Syndrome and how they can reach their goals and achieve their independence.
What do you do if you're asked to explain what Down Syndrome is or if you're asked to explain it to a younger person?
One of the ways I do that is by explaining that most people in the world have 23 pairs of chromosomes, adding up to a total of 46. But, an individual with Down Syndrome has an extra copy of that 21st chromosome adding up to 47. Another way is by pointing out that there's always information on our website but sometimes it's even as simple as saying there's a third copy of the 21st chromosome. Down Syndrome is a disability that's a bit more visual for folks as well. They can see that their ears are a little bit lower and they can see the bridge of their nose and some of those other physical features that separate them from others.
If you could change one thing about people's perception of children or adults with Down Syndrome, what would it be and why?
There are two things that I would say. At the NDSS we work really hard to change people’s perceptions of people with Down Syndrome and raise awareness that people with Down Syndrome are just like everyone else. They can be in the classroom going to school, they have opportunities for a normal school and careers after they go to school and they can go to college, they can do everything that you and I can do. They're also capable of being loyal friends, and getting married to a person they love. They have so many more capabilities, the same amount as we do.
Why should people get involved and encourage the equality of people with Down Syndrome? What steps have you taken to ensure people with Down Syndrome are equal?
Being inclusive. If you know an individual with Down Syndrome invite them to hang out with you and your friends and encourage your friends and family to do the same. Another piece that is important is encouraging your community about the laws that impact people with disabilities. We at the NDSS make it really easy to contact your members of Congress and share with them why it's important for some of these laws to be changed not just for you guys but also with other people within your community.
What progress has been made in your research/work and what has been a result of it?
We have had multiple laws passed at both the national and the state levels that help families, their caregivers, and people with Down Syndrome. One of the laws that we are really working on at a state level right now is on organ transplants. A lot of people don't know that people with Down Syndrome can be discriminated against for organ transplants. We had a friend in California that was told his IQ was too low, and that he couldn't receive a kidney transplant because of it. They reached out to us and we stepped in and found some resources and doctors that would get him his organ transplant. He finally did, and he is living a long and healthy life. We've made a lot of progress in how people in the world see people with Down Syndrome. We're on Tik Tok and we've had some really great videos that have really gone viral, reaching a whole different audience that we can help teach about Down Syndrome. We're also on Instagram, Facebook, and YouTube.
What do you think about the inclusion of people with Down Syndrome? Do you think its status is getting better or worse?
I think that inclusion regarding people with disabilities is much better than it's been in the past. Although, we still have improvements to make. We're always fighting for more inclusion for individuals with disabilities and, where they're typically developing in the classroom or workplaces, our team works with companies that are big and small to encourage them to hire people with Down Syndrome. I think that we're seeing more inclusion in the classroom and we need to see what the next steps are with employment and post-secondary programs.
What can small communities do to support people with Down Syndrome?
There are so many ways to do this. Be inclusive and supportive of people with Down Syndrome who live in your communities. Share success stories, social media being a great platform to do that and show things that your loved ones are doing well. The other thing is volunteering. Volunteer at your local Down Syndrome organizations or volunteer for other things that will bring you closer to the community and listen to stories. We're seeing a lot of younger folks trying to make a change. And they're doing that and letting their voices be heard much more than we have seen in the past.
This Concludes the Interview
Note: A Special Thank You to Kandi Pickard for Agreeing to an Interview with the Little Miami Tribune
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