The Paid Leave Podcast

A Mother Raises Awareness and Advocates for Her Son and Others with Down Syndrome

• The Connecticut Paid Leave Authority • Season 3 • Episode 33

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In this episode of The Paid Leave Podcast, we speak with Kandi Pickard, the CEO of the National Down Syndrome Society (NDSS). Down Syndrome Awareness Week is celebrated across the world from March 15 to March 21 every year. The purpose of the week is to create awareness about individuals with Down syndrome and the difficulties they might face in their lives.  About 5,000 babies are born every year in the USA with Down syndrome. Due to advances in medical technology, individuals with Down syndrome are living longer than ever before. With 80 percent living past 60 years old. In March it is also National Developmental Disabilities Awareness month.

Kandi Pickard provides vision and leadership, working collaboratively with individuals and organizations like CT Laid Leave, to support the entire Down syndrome community.  Kandi’s involvement in the Down syndrome community first started as a local volunteer and advocate after her youngest son, Mason was born with Down syndrome. Ten years later, she leads NDSS with a focus on building community and keeping people with Down syndrome at the center of everything the organization does. Kandi says that CT Paid Leave is a great resource for caregivers, and for those with chronic health conditions. She says the flexibility to take time and be allowed varying lengths of leave aligns with the mission of the NDSS.

To get in Touch with NDSS please go to their website: National Down Syndrome Society (NDSS)

For questions or to apply for benefits please go to our website: CT Paid Leave

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Nancy Barrow:

Hello Connecticut, and welcome to The Paid Leave Podcast. The title basically says it all. I'm Nancy Barrow, and I will be delving into this new state program and how it can help you and your family. This podcast will give you information you should know about Connecticut Paid Leave and maybe just a little bit more. Connecticut Paid Leave brings peace of mind to your home, family and workplace. Welcome to The Paid Leave Podcast. Down Syndrome Awareness Week is celebrated across the globe from March 15 to march 21 every year, and the purpose of the week is to create awareness about individuals with Down Syndrome and the difficulties they may face in their lives. About 5000 babies with Down syndrome are born in the United States each year, and due to advances with medical technology, individuals with Down syndrome are living longer than ever before, 80% living to past 60 years. In March, it is also national Developmental Disabilities Awareness Month, and joining me today to talk about Down syndrome, Is Kandi Pickard. She is the CEO and President of the National Down Syndrome Society, and she provides vision and leadership, working collaboratively with individuals and organizations to support the entire Down Syndrome Community. And she holds a degree in business administration, and brings two decades of experience in operations and effective administrative management to her role at NDSS. And Kandi's involvement in the Down Syndrome Community first began as a local volunteer and advocate after her youngest son, Mason, was born with Down syndrome. And 10 years later, she leads NDSS with a focus on building community and keeping people with Down syndrome at the center of everything the organization does. We'll talk about how Connecticut Paid Leave could help individuals, families and caregivers. Welcome to The Paid Leave Podcast Kandi.

Kandi Pickard:

Hello. Thank you for having me.

Nancy Barrow:

It's so nice to see you, and why don't we start with the basics, right? Can you tell me what the National Down Syndrome Society does?

Kandi Pickard:

Yeah, absolutely. So I'm happy to give a little background of it. So NDSS was founded by a mom who had a daughter with Down Syndrome who was looking for resources, looking for that connection, and just really was missing it. And so she created NDSS and NDSS, I think in her mind, when she first started, it was going to be like a little bit of a parent group and an opportunity to create and share information and resources in 2024 we celebrated 45 years. So fast forward 45 years, and now we are this leading advocacy organization which really supports the lifespan, so from birth all the way to end of life, for not only just individuals with Down syndrome, but their families, their caregivers, and everybody who's involved in their life.

Nancy Barrow:

And so those services that you offer, how do you start, you know, and so if someone, a parent, comes to you and they have a baby with Down syndrome, what are some of the services that you offer?

Kandi Pickard:

Yeah well I think what's really different for us, and just to kind of give some perspective to your listeners, so we are a national organization, so we really help drive what communities are hearing that they need within their community. So we have probably over 300 local Down Syndrome organizations, or affiliates, is what we call them, that are located across the country, many of them in Connecticut, New York, right? That kind of tri state area there is, there's so many that really support that day to day piece of a family. Now we do have this individual tie. So when I think, when you talk about, right, you get that diagnosis, our website is the first website that comes up when you search down syndrome. And when you get on there, like, our website will walk through, you know, what do you do if you get this, this new diagnosis? Or, what if you just had a baby in there, you got the diagnosis? You know, after after birth. Like, what are resources? What are understanding that's there? I think the best part of of what we offer our families is that when you call, somebody picks up the phone. So at the end of the day, you're picking up and and if this is your first call, and you are just a ball of emotions with getting a diagnosis or experiencing something within your you know within your life, like you have somebody who's going to listen, support you and be able to provide you know some information on what they can take back to talk with their families about.

Nancy Barrow:

How did you become the CEO and President of the National Down Syndrome Society?

Kandi Pickard:

That's a story.

Nancy Barrow:

How is that? How did that happen?

Kandi Pickard:

Well, as you mentioned in my bio, so I have a almost 13 year old son with Down syndrome. Mason's birthday is in March.

Nancy Barrow:

A Teenager, uh oh!

Kandi Pickard:

Yes! Right around World Down Syndrome Day too. So I all feel it's very kismic in some sort of way. In some capacity, Mason is my fourth, and, as I say, my final child. But I had and after Mason was born, I really felt like there was just this pull for me to get involved. And so I joined our local as we talk about a. Affiliate. I served on their board, and I was actually the person, when you did get that diagnosis, that I was the first one that they met with. I brought resources support. Was just that person to be able to listen and just be a sounding board for families. At the time, this was going back, gosh, 10 years ago, one of the pieces of legislation that NDSS was working on, called the ABLE Act, was going on, and we were all advocating for the passage of the ABLE Act. And the CEO at the time came to actually visit Fort Wayne, and she kept joking about, you know, I've got all these opportunities. Gosh, if you'd be interested, you should really look at them and apply. And I was like, I'm not moving to Washington, DC. Yeah, we Indiana, right? Like, we're not doing all these types of things. Well, fast forward. My husband, pushed me to do this, so I started with NDSS in a supportive role to our CEO, and I've held many different roles throughout the last 10 years, but I've been in my current role as president CEO for the last Gosh, it'll be six years this year that I've been in this role, so it's been a really unexpected but really great journey. When you think about how we started with a mom and for me to be in this role, it's very it's a blessing to me.

Nancy Barrow:

And what's your vision like? What do you want to have happen with NDSS, is it all advocacy that you're really trying to do? Or what's your vision?

Kandi Pickard:

Oh, that's a great question. I mean, the advocacy is at the heart of what we do, and I think it goes further than just we do spend a lot of time in policy and advocacy. That's a big part of our work that we do is just advocating for the rights of people with Down syndrome, looking at ways that caregivers and families can be supported in these roles of caring for a person with a disability. But I think that also goes bigger than that. I think you mentioned right as you're talking about down, sort of the life expectancy right in the mid in the 80s was 25 now folks are living 60 plus. So what that means to me is that we have a critical role in providing resources, supports and just avenues for families to live a long life. And I think what we're witnessing over the last few years is that caregivers are, you know, are tired. Caregivers are now dealing with their own aging, you know, circumstances and an adult that's aging that we've got to help find some gaps there, to provide some some support to them. And that's the I think, for me, there's a lot of things I think about with the vision of NDSS, but when I even internally, look at Mason, you know, my I want Mason to outlive me, right? I want Mason to live a very healthy life. So how do I kind of take my own personal, you know, journey here, and also what I'm hearing from families and people who are supporting our loved ones and making sure that path is is solid, and that there's a, there's there's just supports and recognition for the caregiving role that really needs to be recognized in our space.

Nancy Barrow:

Yeah That's something that we do at Connecticut Paid Leave. It our caregiver leave is is really amazing, because our definition of family is very expansive. How do you think a program like this could help you as a parent?

Kandi Pickard:

There's two ways. I think there's there's number one, I would say, if you are a caregiver, right, and you are experiencing these things like, you know? And I could speak for NDSS and probably other disability organizations like we want to hear from you. We want to know what your experience because then we're able to tailor where our priorities and our focus are with what we're creating or advocating for providing for families and for caregivers. So I think first and foremost that, and I think also the fact that we're able to support a family through this is invaluable. And I think you made a really good point of that caregiver. The caregiver isn't always mom and dad, right? It could be a grandparent, it could be a direct support provider, it could be a sibling, a best friend, right? All of those different avenues, and that caregiving path looks different for each of them. And so I think for us, it's just so critical for us to be able to give people the information that they need, especially in I think in our in our world right now, it's like we're so limited on time. So how do we provide digestible information that they can get, that those facts that they need to be able to, you know, manage their day to day life.

Nancy Barrow:

Right and not have to quit their job, right? Like we give up to 12 weeks of income replacement that they can take, all in one block or intermittently or at a reduced schedule from work. So the flexibility, and I would think that it would really help families who are dealing with a child or an adult child with Down syndrome.

Kandi Pickard:

Well I think what you're offering to to your families, a lot of families, don't realize that those, those resources are out there, right? Because we so many calls that'll be, you know, maybe an aging parent, and they're just, they're tired, right? And they're tired and they're. Loved one with Down syndrome as this active social life, and excuse me, they're trying to, like, figure out, how do I support How do I take care of myself? And it's like there are groups like you in states that are really giving so much support and necessary resources to families to be able to navigate this path. You know, whatever that looks like for them.

Nancy Barrow:

You know that was an interesting point that you said. You know, how important is your mental health and well being as you go through this as a mom and as a family? Did you reach out to support groups for yourself and therapists, because that is so important, and that's something, again, that Connecticut Paid Leave does mental health. We definitely give you up to 12 weeks of income replacement if you're if your doctor says, yeah, they're depressed and, you know, anxiety, and those are real serious health conditions, which we cover.

Kandi Pickard:

Oh it really is. And I think, you know, when I look back, gosh, almost 13 years ago, right? I think that that diagnosis was, for me as it is, similar to a lot of families who get a disability or a Down Syndrome diagnosis, there's there's that worry, that concern that, you know, that path that I initially thought was going to be my fourth child is very different now, but I think that I had such great family support at that point in time that I just shifted my mindset was like, Okay, how do I get involved? How do I learn everything that I can about Down syndrome, so I can make Mason's life like everything that he deserves it to be. I think what's interesting, and I speak of this for Down syndrome, but I think it could probably be reflected in any disability for a caregiver, it changes, right? You have that baby, you know, new birth, like all of those things, and then we start school. And then now, as we're talking about 13, we're in a different stage with puberty, and then we're going to start to transition into adulthood. And, you know, and so when I look at even where I am now, there's such a need where I will get online, or I'll try to find a little support group. I think a lot of people would think like I have access to all these resources, and I do, but I think I again being very transparent with you and your listeners here, I don't probably do as much or take care of myself the way that I should. I think I put that energy into making sure our families right are taken care of. And so there is a need that I recognize, and we may talk a little bit about this too. With our adult Summit, we had a this wonderful woman that came in and talked about mental health and specifically for caregivers, and I sat in her session, and I've had time to talk to her afterwards, and the feedback that she gave me really is allowing me to reflect and realize that I do have to take that time. I have a great, you know, village around me that supports me and helps me, but at the end of the day, like I do need to have that time to process and reflect and be show up, to be my best self, right?

Nancy Barrow:

Right? And I think, you know, women tend to be that caregiver to everybody in the family, right? And you have four kids, so you're busy, you know, I'm sure you do need to refill your coffers and get some help.

Kandi Pickard:

Working on it a work in progress!

Nancy Barrow:

Yeah, it's a process, right? Maybe we can talk a little bit about like, when you first got the diagnosis. Tell me what Down syndrome is. Are there different types? Are there varying levels?

Kandi Pickard:

Yeah I mean, you mentioned right about five or about 5000 babies are born. And we kind of break it down, about one in 770, 775 babies in the United States are born with Down syndrome. So Down syndrome, again, just to kind of give the condensed version, there's the third copy of the 21st chromosome, which is a genetic condition that that brings down syndrome to to life. And I think that what's really unique for me was I sat back and I always thought about it. I was probably Mason, was, you know, my last child, I was a little older. Did my age have things to do with it? And I think there is always that aspect and research that we see, but we're also seeing it with all ages now, there are, there are, you know, young mothers that are having, you know, babies with Down syndrome. So I think that that's shifted and changed a little bit over probably the last few decades. I think for me, the first thing that I wanted to do is just try to understand what is Down syndrome. What does this mean? Yeah, I think that sometimes, you know what I what I learned was, right? With Down syndrome, there's a low muscle tone. There is, you know, a lot of things, the the the Your ears are a little bit lower, you have almond eyes. You have a little bit of a the bridge on your nose is different, right? There's those visible differences with Down syndrome. But then there's a lot of those cognitive types of things that you don't know, right? When you have a baby, don't see so for us, I mean, we immediately, as soon as we could get Mason into the therapies and to just try to give him every you know, the best steps forward for him as he was developing. And a lot of families now have access to those in much different ways than what they use. Do. So it was a really interesting kind of journey for me. And I still learn about Down syndrome. I think as we talk about our aging adults, there's so much we're learning around you know, what this chromosome means to some of the Alzheimer's pieces, and a lot of different research and data is being done that I think as our loved ones are living longer, like we're learning more to really help that life expectancy grow, and also have those medical interventions that are going to extend the life of our loved ones.

Nancy Barrow:

Yeah so interesting. All of those things are so very interesting. And that was one of my questions is, does your chance go up if you're an older mom? But I think that you answered that by saying, really, like younger people are getting it too.

Kandi Pickard:

Yeah I mean, there's research, and I think that it's, it's genetics, right? I think it's not hereditary. It's, there's nothing like that that, you know, science proves that, that, I guess I don't like to use the word causes Down syndrome, but Right? Creates that genetic, sure, that genetic piece. So, I mean, I think that you see families of our women of all ages that are having, you know, kiddos with Down syndrome.

Nancy Barrow:

I think that we have to be sensitive too, right? Like, how do people with Down syndrome like to be introduced? Is that something that's very personal? I'm just wondering. I feel like people should know the correct way.

Kandi Pickard:

Absolutely no, it's a great question, and I'm glad that you asked, because I think sometimes I think sometimes i i always reference my dad will sometimes, in the most loving way, say, oh, Mason has Downs in the US. We don't typically say downs. We Down syndrome. Now in the UK and in Europe, they do. You reference that a little bit differently. So again, it's all kind of culturally, where you are, I think, for us, and how we represent our community. And what we recommend is called people first language. So, you know, if you're talking about a young woman who has Down syndrome, you're not saying a Down Syndrome woman, you're saying a young woman with Down syndrome, or, you know, a person first. Yeah, exactly. So it's all kind of very much people first. And I think what I would recommend is, if you, if you meet somebody with Down syndrome, ask these questions. They're happy to say, you know how they want to be spoken to. But I think a lot of times, you know, if you meet, you know, Mason, it's Mason. It's not Mason, because he has Down syndrome, it's Mason.

Nancy Barrow:

It's Mason, yeah, yeah. And tell me a little bit about Mason. What kind of now teenager is he?

Kandi Pickard:

Yeah he's a spunky little kid. I have to say, Mason is in sixth grade. He's fully included with his class. He has, you know, when you think about education, there's opportunities for him to for for support, to be pushed into him, and also for him to be pulled out in certain areas, which has been a really, really good piece, a fit for him when it comes to his educational journey. But you know, Mason just wants to be with his friends. He's been looking forward to this whole week of going to see Sonic three with his friend Luke from school, and so they're gonna go get pizza before, like it's a whole thing for him. Skip loves his birthday. We were counting down the days. We're planning birthdays, we're doing all those other types of things. But I think what the best part about Mason is is that he is truly, authentically himself. He does not care or worry what anybody thinks about him, and I think that he just, he just, he changes somebody's day just by making them laugh or giving a hug or a high five and a fist bump, which I think is what I love the most.

Nancy Barrow:

That is awesome. What are your hopes for Mason as he grows? You want him to go to college. You want him to have that experience. You want him to be able to work, I'm sure. But what are your hopes for Mason?

Kandi Pickard:

You know, I think for Mason, I just want him to be included. I just want whatever his goals or dreams may be, if that's school, if that's work, if that's starting a business, or if it's volunteering, right, whatever that might look like for him, is that he has the opportunities to be able to do what he wants to do, but also be supported in a really productive way. I think that resuming competence in Mason is what I always like to say, because he may tell you he can't do something, but I can 99% guarantee that Mason can do that, if you just, you know, push him and, you know, assume that he can.

Nancy Barrow:

Yeah as a mom, how did your life change having a child with Down syndrome, with the other kids and your family dynamics.

Kandi Pickard:

I think it was one of the first things I thought about when we when we realized that Mason was diagnosed with Down syndrome, was, how is this going to impact my other kids? How are we going to tell them? How are we going to just manage right all of the things we have day to day, and then a child with a disability and my kids just shocked me. It was like, We don't care if he has Down syndrome, we just want to meet him, right? We just want to meet him. We want to, you know, be his friend. And that's really the whole relationship that they've had. I mean, they they wrestle with him, they push him, they they they challenge him in all of the ways. So I think for me, when I look at that, I think Mason has not only changed my life and my career. I mean, I was working in hospital and in law and doing all these other types of things, and now I have this privilege to support and lead other families and caregivers and loved ones to understand and learn more about Down syndrome, and I see my kids pass very similarly, following on how Mason's influence has changed them. My daughter wants to be a special education teacher, right? Like there's these little pieces to where it's like he's truly given us, I don't know, just blessings upon blessings, but he's also just completely like, made us better people and allowed us to really live our life fully.

Nancy Barrow:

What a great gift that is, to make you a better person.

Kandi Pickard:

Truly, it is I don't think I was a bad person. No, I think that at the same time, like I look at things very differently, right? My mindset is very different. Our family's mindset is very different.

Nancy Barrow:

I love that. What would you like people to know or learn in March, during World Down Syndrome Awareness Month and national development total Disabilities Awareness Month.

Kandi Pickard:

I think that if you haven't met somebody with Down syndrome, or even anybody else with a disability and intellectual or developmental disability, meet them, learn how great and what they can provide to not only your life, but your community, to your workplaces, to every aspect of your life. I think that we celebrate Right Down Syndrome and all of these different things in March and in October because we want to bring awareness to the beauty of Down Syndrome and the abilities of people with disabilities. I mean, that's really what it comes down to, they deserve a place in this world, just like the rest of us, then it's our job as humans to make that possible for them.

Nancy Barrow:

And what would you like people to take away from this podcast today?

Kandi Pickard:

Yeah, I think that it would be. I want them to know that NDSS is a resource. I think that, as I mentioned earlier, people will pick up the phone, we'll answer emails, we'll do whatever. But you know, even if you maybe it isn't specific to Down syndrome, our resources really kind of cover disabilities in general. So if you're looking for support with financial wellness, or you're looking at like tools to understand Alzheimer's, there, there's so many resources and supports that are on our website. I think Additionally, we host an event called the adult Summit, which is really focused on our adult population, but it also always has an aspect of caregiving in there. So if you are a caregiver and you're looking for just connection, resources, anything like that. I mean, we, we hopefully can be a home for you and help you in that journey as well. Is the summit, live, yeah. So we hosted it last November in California. We typically will try to move it around the United States, just to give access for everybody. This year, in 2025 we're going to do a virtual option. So I would say, stay tuned to our website or email, or whatever else, Facebook, all of those different digital platforms, to get a little bit of announcement, and then we'll be back in person. And I believe in March of 2026, we're kind of doing some planning now, so hopefully some announcements coming soon. The Summit sounds awesome. It's great. I mean, I think we had close to 450 people at our last summit, and you've got individuals with disabilities, you got caregivers, you got families, you got professionals. It's just a really great opportunity to connect with others and learn at the same time.

Nancy Barrow:

What advice would you give as the CEO and President of NDSS and as a mom to someone who just had a child with Down syndrome?

Kandi Pickard:

My first words would be congratulations. It truly is congratulations. I think that regardless of the fear or worry that you may have, you deserve that congratulations. You're having a beautiful child with Down syndrome. And I think that everybody's journey is different, and I have my struggles and I have my challenges, but at the end of the day, you are not alone, and you have a whole community that will will embrace you and support you however, however you need.

Nancy Barrow:

It sounds like you have just such a wonderful life with with Mason.

Kandi Pickard:

I feel truly so lucky to have him in my life, and I think that when I watched the impact that Mason and even all other individuals with Down syndrome make on people who may not have had a connection or may not have met somebody with Down syndrome, i. Um, it's truly life changing. I joke we want to cruise earlier. Or guess last year now is when it was and Mason had the opportunity to meet this couple, and this couple just has embraced him, and is they've went to concerts together. They've invited him to come, you know, and hang out at their house and do all these other types of things. Like Mason is now somebody that they just want to hang out with and be around, because they just have had just such a great time getting to know him, but now getting to know the Down Syndrome Community at whole so it's just, it's wonderful to see that impact.

Nancy Barrow:

You know, I just wanted to ask if you have any other thoughts about Connecticut Paid Leave as we help people with chronic conditions. Any last thoughts about Connecticut Paid Leave?

Kandi Pickard:

I mean, I would just say, look to NDSS as a partner. We are here to help support caregivers and making sure that their leave is is is it a possibility? I think additionally that there are so many supports in Connecticut as well, even from the from the disability spaces, that just continue to look to us as a resource and know that we're we're here to support and validate the work that you do.

Nancy Barrow:

CEO and President of the National Down Syndrome Society, Kandi Pickard.Thank you so much for being on the paid leave podcast, and thank you so much for sharing your personal story about Mason. I think I got to know a little bit more about how he affects everybody.

Kandi Pickard:

Absolutely my pleasure. Thank you for having me.

Nancy Barrow:

For more information about NDSS, you can go to ndss.org For information or to apply for benefits, please go to ctpaidleave.org This has been another edition of The Paid Leave Podcast. Please like and subscribe so you'll be notified about new podcasts that become available Connecticut Paid Leave is a public act with a personal Purpose. I'm Nancy Barrow, and thanks for listening.

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