Episode 16: Katy Neas’ Vision: Advancing Disability Rights Through Impactful Public Policy

Episode 16 Show Notes

As CEO of The Arc of the United States, Katy Neas reveals the inner workings of an organization that promotes and protects the human rights of people with intellectual and developmental disabilities. From The Arc’s expansive network of nearly 600 chapters to its innovative approaches to funding, Katy Neas’ leadership fuels the advancement of disability advocacy. Katy dives into the future of Medicaid, shedding light on potential changes and their implications.

She also highlights the game-changing benefits of hybrid work for parents and shares her journey through advocacy, emphasizing the value of networking and powerful collaborations with organizations like Easterseals.

Links:

• Learn more about Katy Neas and The Arc.
• Connect with Kendra Davenport.

Transcript

Kendra Davenport:

Welcome to Onboard with Transparent Leadership in Easterseals podcast. I'm Kendra Davenport, president and CEO of Easterseals, and I am excited to welcome today to the program, Katy Neas, who is chief executive of The Arc of the United States. She is new in that role, but Katy brings a wealth of, disability developmental disability experience to the table. She's also, all cards on the table, a former Easterseals employee for many years, so I'm super excited to talk with her. She has more than 35 years experience in disability policy and really was instrumental in standing up, policy that that really helped bring about, many of the advancements we've seen, in disability policy in the United States. Katy has worked for The Arc for about, what, 8 months, Katy?

Katy Neas:

That's right.

Kendra Davenport:

And prior to that, she worked for the US Department of Education, and has held many, many roles. So I'm really, really in the in this space. Really delighted to have you with us today. Thanks.

Katy Neas:

Yes. My pleasure to be with you.

Kendra Davenport:

So one of the things and, you know, we what we talk about here is leadership, transparency, but I really am curious. You just started a national CEO role. The Arc is one of the oldest, American NGOs focused on advancing policy for people with intellectual and developmental disabilities. And you're you've been in that role a minute. So can you talk a little bit about and I know you you have said publicly that taking on that role felt like coming home, which I love. I love that descriptor. Can you talk a little bit about what drew you to the role and why you feel that way?

Katy Neas:

Great. Thanks. And it's awfully nice to be with you and and be with, good friends at at Easterseals. You know, my journey started with an internship in college with Senator Tom Harkin, where I really learned how government can be an equalizer for people with disabilities. And over the years, I helped pass the Americans with Disabilities Act, increased expectations for students with disabilities and protected health care for children and adults with disabilities in the Medicaid program. And in the last 6 months or 8 months being here at the ARC, you know, we are a nationwide movement to advance the civil rights of people with disabilities and their families. And as you well know, people with disabilities are often the first to be sacrificed at the altar of what I call fiscal, responsibility. Right? And I worked at The Arc because we're an army of what I call badass individuals with disabilities and their family members who are standing between people with disabilities and the policies that are going to harm them.

Katy Neas:

Now I'll have to say, in my many years at Easterseals, I felt that Easterseals was also staffed by those bad ass people who wouldn't take yes or no for an answer depending on what the question was. And one of the main reasons I wanted to come here was how much I loved working for and with Easterseals affiliates and getting to know their staff and their clients and how the policy that we were doing at the federal level was being implemented, hopefully, successfully at the ground level by real people.

Kendra Davenport:

I love that. And, and that is a great segue to my next question. Easterseals is a federated model as you well know or many of our listeners might not know. We're comprised of 70 affiliates nationwide. The ARC is far, far larger than that. Can you talk a little bit about I don't know if you refer to them as associations or chapters. Chapters. Can you talk a little bit about because for me and I just did a one on one with one of our team members, and I he asked me, Kendra, what was one of the biggest surprises when you came to Easterseals and took on this role you've been in in about two and a half years? And I said, I grossly underestimated how difficult it was going to be to, influence positively, and foster collaboration among a federated model.

Kendra Davenport:

I think transparent leadership really plays a big role in that. Can you talk a little bit about the size of The Arc nationally and how you're tackling that?

Katy Neas:

So The Arc is not in every state. We're in 47 states, and we have just under 600 state and local chapters. So each one of our chapters pays a membership fee to our national office. Some of our local chapters also pay a fee to their state office, but not all of them do. Most of our state chapters are engaged exclusively in public policy in state capitals. And then our local chapters, it's an interesting group. So we have about 20% of them have budgets less than $50,000 and they are primarily run by volunteers who may do some community events. And then we have 54 chapters with budgets in excess of $25,000,000 that are robust, sophisticated service providers.

Katy Neas:

So we're every we're mom and pop to really, really big, organizations. But what makes The Arc somewhat unique is that priority first priority to public policy advocacy.

Kendra Davenport:

When you when you think about, galvanizing, I guess, support around specific issues, can you talk a little bit about what are those what those priorities are right now for the ARC?

Katy Neas:

Absolutely. So next year, regardless of the outcome of the election, we anticipate a major discussion on the role and value purpose of the Medicaid program. We've been here a gazillion times before. One of the things that has been interesting at from the Arc's perspective is our chapters advocate on state policies related to Medicaid every year. And it's how much our direct service personnel paid, how many waiver slots are available, things of that nature. What what they don't do every year is look at what role the federal government plays in the foundational aspects of Medicaid. So congress sets the eligibility criteria. It sets the nature of services, which ones are mandatory, which ones are optional.

Katy Neas:

It sets forth the process by which waivers are approved. And our chapters aren't used to that because the last big fight was 2017, which seems like a lifetime ago, but it's not. And we are in the process of reengaging our chapters so that they are absolutely rock solid in understanding what are those decisions that are going to be before Congress. Because if congress were to change the structure of the Medicaid program from an individual entitlement to something else Mhmm. And we lost that individual entitlement, you know, it it frightens me a great deal. Mhmm.

Kendra Davenport:

About talked about that when we were we met a month or so ago in in Washington. That is what you describe is you know, I feel it. I hear it every day. We are working towards the same goals, which is why I really was excited to get you on this program and talk to you about this. That's a lot to to manage. Right? Can you talk a little bit about how your leadership principles come into this? Because you have had an an amazing career. As I was I was reading your background, you've had a really amazing career. This is a a massive leadership position.

Kendra Davenport:

Can you talk a little bit again about your your leadership principles, how you apply them, and how they maybe help you manage the the weight, the gravity of some of the issues that you and the ARC across the country are trying to advance or or dispose of.

Katy Neas:

Mhmm. So I when I think of The Arc, I think our first priority is advocacy Mhmm. For people with disabilities and their families. And then under that, I see 2 fundamental priorities. 1 is protecting the integrity of the Medicaid program, expanding home and community based services, making sure that we're getting people off waiting lists. We're increasing the salaries for direct service personnel by state policies. The other one is related to improving educational opportunities for students with disabilities. When I was at the department, one of the things we measured was how states were meeting their requirements under the federal special education law.

Katy Neas:

And sadly, not great. We kept trying to find schools that were doing a great job for students with disabilities where we could have the secretary visit, and we had a really hard time finding them. And so we're trying to change that dynamic by

Kendra Davenport:

Which tells us there's a lot more work to be done. Right?

Katy Neas:

There's a lot more work to be done. Absolutely. But in terms of transparency, what I'm working with my team on is being clear that our top priority is advocacy, and our 2 sub priorities are education and Medicaid. Doesn't mean we don't do other things.

Kendra Davenport:

Other things.

Katy Neas:

But these these are the things that are gonna be driving us for the the near term. Mhmm. And for for me and for them, knowing that means people know where they fit and what the expectations are. And communicating that with our chapters makes everybody understand there's no mystery to it. And I think the less mystery about what your priorities are, the more opportunity you have to actually meet those priorities.

Kendra Davenport:

That brings me I mean, we talked a little bit about some of the challenges facing the disability community writ large. You talk about anything that you regard as an opportunity, something that is poised to benefit people with disabilities that The Arc and other disability organizations like Easterseals can really ply. Is there anything is there anything positive out there that gives you encouragement, Katy?

Katy Neas:

I will say, and I don't mean this as a partisan statement, but, you know, we all watched the the convention last week and saw Gus Walls, express love and support for his father, and his father's word of love and to hear back to him and how some people criticized them and bullied them and tried to make Gus be less than. And what I loved was going through social media and all these people that suddenly became Gus Walt's aunt. Like, going for Gus

Kendra Davenport:

Yes.

Katy Neas:

Gotta go through me first.

Kendra Davenport:

Yep.

Katy Neas:

And I think that sense of community was really beautiful. That when it was questioned, does this kid does does this family belong to us? The answer is yes. Absolutely. And that was very validating.

Kendra Davenport:

Switch it back to you for a second. Anything that well, let's let me let me reframe. What's been your biggest surprise about your current role?

Katy Neas:

My biggest surprise has been the solid commitment to advocacy from my board to my staff to the chapters. And when I asked chapters, what do they tell people they do? And they say, we are we are civil rights advocates for people with disabilities and proudly. Right? They may also provide services, but they proudly say they are are advocates for the civil rights of people with disabilities. So that's cool.

Kendra Davenport:

Very cool. You were recently, recognized, and you're recognized for a lot of of good things, but one of them was, Fortune, 500, 50 over 50, women making a really positive difference. And I I read through that as I do every year, you know, just with immense pride that women like you are leading huge organizations. And as somebody in a CEO role, I can say there there is immense positive. There's also immense challenges. Right? So how, you know, how do you stay buoyant? How do you refuel and recharge? Because I know you hit the ground running, and I know you're not gonna take your foot off the gas pedal. I think you really feel and you you stated it as I as I said earlier. You know, this is like coming home.

Kendra Davenport:

This is an avocation for you, not necessarily just a profession, but that can be draining. So what do you do, Katy, to refuel and to manage your your own, you know, I guess, energy level so that you stay at the top of your game?

Katy Neas:

So I'm a work in progress. Gosh.

Kendra Davenport:

Aren't we all, Katy?

Katy Neas:

Yeah. Amen to that. So, exercises exercise and sleep are my my go-tos. I've been a lifelong swimmer. And for me, when things get too loud, I go swimming. And the notion of putting on my cap putting on my goggles and jumping in the pool and and, you know, taking my strokes. There's a sense of order and the pool is this long. You take this many strokes.

Katy Neas:

You turn. You go around. You and so that really gives me a sense of peace. And my husband will tell you unequivocally that I am a much nicer person when I go. So I you everyone can tell.

Kendra Davenport:

So you need your exercise.

Katy Neas:

Katy's gone swimming or Katy has not gone swimming is, is a big deal.

Kendra Davenport:

I used to say that about my husband. Either he's worked out or he hasn't, definitely impacts his mood. I know that to many people here at Easterseals, you, you were sort of a mentor, and you are to this day. And you've been away from Easterseals for, I don't know how long, maybe a decade?

Katy Neas:

2017 is when I left.

Kendra Davenport:

People regard you very, very highly. Is there someone in your life that you seek out their advice and and who serves as a mentor, or maybe there's multiple people that you can talk about?

Katy Neas:

Yes. So couple come to mind. My boss when I was in the senate was a man named Bobby Silverstein. And I would say when Bobby started as my boss and then became my friend and then became my family. And Bobby's support to me and guidance for me was, without question, one of the most important professional things. Bobby died from cancer a year and a half ago, and I miss him absolutely every day. My mother is one of my mentors. My mother is a 19 fifties housewife, and she could have fifties housewife, and she could have run a major corporation had she wanted to, but she didn't. But she gives me counsel and guidance every day. She's 93 and still a dynamo.

Kendra Davenport:

Love that.

Katy Neas:

Yeah.

Kendra Davenport:

Love that. My dad once told me I remember I was this was early in my career, and I was laid off. And I was very young. I was in my twenties, and I just didn't know what to do. I just I called my dad. And I said, I just I don't know which end is up. I just don't understand. And I took it so personally.

And I said, I can't believe they've done this to me. And he said, Kendra, they didn't do it to you. They didn't do it to you. He said, you you go to work, and all you all you really should expect is is people's respect. If you find at work that you you are working with someone that you care for and who is your friend, that's gravy. And I've thought of those words, throughout my career, and he's right. But I also think, you know, if you give, you get back much more than you give. And I'm fortunate to have a number of people in my career that I regard just like your your former boss, friend, and family, which was such a great descriptor.

So thank you for that. Completely agree. And and my mom passed away 2 years ago, but she was definitely a mentor, on some things, not on all. Still still go to my dad for for most of that most of that affirmation, for sure, but also that pushback too.

Katy Neas:

My dad was very adamant that I needed to be... he always just say to me, now, Katy, make sure you're getting paid what the men are getting paid.

Kendra Davenport:

And Good advice, Katy.

Katy Neas:

And so when I negotiated this job, they asked me what my salary was. And I said, my dad would say. And they said to me afterwards that they really appreciated that because it wasn't a number. It was, don't treat me differently because I'm a 60 year old woman. And, you know, to start a job, this kind of job at this stage in my life, this at this age, you know, your tolerance for things is different than when you were 25. Right?

Kendra Davenport:

Amen to that. That is absolutely true.

Katy Neas:

You know, I'm much more comfortable standing up for myself. I've always been a good advocate for other people. I'm now a much better advocate for myself. Mhmm.

Kendra Davenport:

Good. Good. I'm I'm really happy to hear that. I was gonna ask you a question, but I'm gonna go for something totally different. You you like me, you have been at this a long time. So I just turned 58. We're very close in age. The the working world has changed dramatically, and I think largely for the better in terms of of what's available to women.

But there are things that I I regard as not such great changes. I'm still not sure how I feel, for example, about this hybrid model. I I worry about junior employees and how the the hybrid or the fully remote work model is going to impact them career wise. Mhmm. Because I think so much of what I learned, and I don't wanna speak for you, but I'm sure I'm fairly confident you'd agree, was learned interacting with your colleagues. So, again, I don't wanna put words in your mouth. Can you talk a little bit about that and and how the change in in work work for women, work for all people, the changes you've seen, and and what you regard as really positive, and what you maybe lament as, I wish it was the way it was before.

Katy Neas:

Yeah. I have very strong conflicting feelings on all of this. When I think about when I first started at Easterseals, we had, at the beginning of May every year, the nationwide training conference. And it was, like, 4 days. And it was always someplace kinda groovy.

Kendra Davenport:

I've heard a lot about it. There are a lot of people who wish we'd bring it back.

Katy Neas:

And that's where I got to meet affiliate program staff. And some of them are dear, dear friends today because we hung out in a conference together and had a cocktail. And I learned what they were doing, and I I learned so much from just being in their presence. Think about, so that was wonderful to be able to be to travel, to be together, to learn from each other was absolutely foundational to me as a professional. I think about when my daughter was born almost 25 years ago and we had our standard hours were 9 to 5. Well, as, you know, sometimes kids barf on you as you're walking out the door or something happens

Kendra Davenport:

Uh-huh.

Katy Neas:

Which makes you 20 minutes late. Not that you planned for it, but that's what life threw at you. So I think the hybrid work, especially for people with young children, can make a huge difference. If you're not racing out the door to get to the office by 9 o'clock, but you're figuring out whatever your day care issue is and you need to sit down in your spare bedroom at 9 o'clock, somehow that can be easier. And so I'm I'm cognizant of that, especially for our staff that have young children. I couldn't agree with you more. I think that especially the younger staff, the people that are starting their career, they don't get to learn social norms. They don't get the energy of an office when people aren't together.

They don't pick up on what their colleagues may be working in a different department that might benefit from their input. So we lose these opportunities to learn from and be engaged with each other, which I think is a real loss. Do I love not putting on shoes every single day? Yes. I love not putting on shoes every single day. But I I really think we are losing something profound by not being together physically together more.

Kendra Davenport:

You know, I do too. And I think, I think working in an office, my children will say, oh, mom. It's just your your perspective because that's that's what you experienced. Doesn't necessarily make it right. But I I've thought a lot about it, and you I love the way you phrased it. You're conflicted about it because I think there is a lot of good. And and listening to you talk about young parents, for example, and how much easier hybrid might make their lives, I I can tell you for the 1st 20 years of my career, childcare and making sure that was rock solid all the time was the bane of my existence. It was the thing I stressed most about, both letting my children down and letting my employer down.

So if we if it eases that for anyone, I think that's great. But also, I feel that for people who are very junior in their career, the the opportunity to deal with a difficult teammate, to resolve conflict in person, to be able to talk things through real time and in person, very, very different than talking things through on Zoom or worse, email, which I feel really is is, you know, a blessing and a curse because I think I think this automated means of communication, Internet, everything, all of all of the things that make communication so expedient and and, omnipresent. Right? There's no there's no shutting it off. All of those things, I think, have conspired against the ability to articulate things and verbally discuss, you know, openly, transparently things that are challenging and even more so write. I think it is like finding a needle in a haystack, when you are trying to hire someone who whose primary role is not writing, but who should be able to write. I really think those have have been dampeners, on people's skills. And I do I am concerned about people, like, my children's age, in their twenties, just entering the work force, how they're going to fare 10 years from now, and where they're gonna find the mentors. You know? So we'll say.

You know, we'll it is a work in progress, I think, we're all trying to to get at. Can you, I have maybe 2 more questions for you. And one of them is, is there something that you do that helps you maintain efficiency at work? Is it a tool? Is it an app? Is it just a a practice you engage in? I'll give you an example. Every day, I try to set aside maybe 15 minutes before I leave my apartment or my house just to mentally sit and think about my day. I look at my calendar. I'll look at it 3,000 times more, but I try to make that calendar indelible in my mind so that I know when I can't go over. I know when I can probably grab lunch if I can. You know, those things.

And that 15 minutes, sometimes it's like the last peaceful headspace I have, but it's invaluable to me. Is there anything that you do or any tool you utilize that helps you be efficient?

Katy Neas:

It's Friday. I try to block off Friday afternoons. In the summer, we have summer Fridays, and people can do as well.

Kendra Davenport:

This is our last summer Friday here, so it's a little gloomy.

Katy Neas:

But Friday afternoons are my salvation. It's when I get caught up when I plan for the next week. I also spend a fair amount of time on Sundays just looking through the week to make sure that I have the materials I need or that I know what needs to be done. I'm also trying to have shorter meetings because you're we're all drowning in meetings. And and they need to have a purpose and an outcome. And if they don't, then I don't wanna have them. So those are some of the things that I do. I do live by lists.

Kendra Davenport:

You're a list person.

Katy Neas:

And I do live by trying to stick you know, to prioritize my big buckets first. Mhmm. I think one of the things that happens when you've been a working mom where you're really on the brink of disaster from the minute you get up to the minute you play. Right?

Kendra Davenport:

Right.

Katy Neas:

Well, once your child leaves home, you're still wired that way because you didn't have any choice of you have this amount of time, and you have to get done what you need done in this amount of time. And I pretty much live by that. I try not to work in the evenings during the week. I work on the weekends to catch up, but it's not super high powered thoughtful stuff. But I have to know that I have those backup times when the week goes by and I've gotten through 2 of my items on my to do list when I needed 8 to get done.

Kendra Davenport:

Mhmm. I know that feeling. I know that feeling well. What's the best part of your job right now?

Katy Neas:

Oh, goodness. The best part of my job right now is the support I have from my board. I have the best board. They are visionary and disciplined and forward thinking. So that part's been great. I also have some really terrific staff. And I'm learning about our chapters. They're all so different, but they're also committed.

And to be able to see their good work and know that we're helping advance that, is is pretty awesome.

Kendra Davenport:

That's great. We like to end our episodes with an Ask Me Anything segment, so stick around for that. But before we do, I wanna ask Katy one more question. Anyone who knows me knows I am a voracious reader. I read everything. I read everything from junk to autobiographies to self help to professional, books. And I love to hear from our guests what, if anything, they're reading. Can you share anything that you're reading that you think is something people should read or or which you've just really enjoyed?

Katy Neas:

Absolutely. So I just finished a book called Vision that was written by judge David Taitl, and David's been a good friend of ours for decades. And it's a fascinating discussion both as his journey as a lawyer and and federal judge, but as a person who lost his vision in college and kinda owned it at the end part of his career. He the book reads as if you're talking to him. In fact, I was on a trip and called my husband from the airport and he said, what are you doing? I'm like, I'm just hanging out with David. He's like, David's there. I don't know if David's book. But it's called Vision by Judge David Taitle, and it's just a joy.

Thank you. The other book that I highly recommend, like lots of people, it's called Remarkably Amazing Creatures. And it's about, the primary character is an octopus in an aquarium in Seattle. And it's awesome.

Kendra Davenport:

I've heard about that. I have heard about that. I didn't recognize the title at first, but I have heard about it. Thank you. Thank you for both those suggestions. I'll put those on my list. Thank you for your time today. Is there any final thought about The Arc that you wanna share with our listeners?

Katy Neas:

So I think the more that the Arc and Easterseals can do together at either the federal, state, or local level, the better we all will be. I am beyond grateful for my time at Easterseals. This organization, those people shaped me. I you know, talking with Tracy in Louisiana and the work we were able to do in Monroe, Louisiana to increase the access to early intervention, you know, still is one of the proudest things I've ever done. So these are 2 really, really important organizations that need to continue well into the future, and I hope we can continue to figure out ways to collaborate.

Kendra Davenport:

Oh, you absolutely have my word on that. We are really excited. We are about to launch a national search for someone to lead our government affairs, trying to get our office back to where it was Exactly. You know, when you were here with Easterseals. So more on that. And and you and I, I feel, will will share continue to share, our desire for these two important organizations to work together.

Here's a question from a listener. They say, Kendra, Having broad work and communication styles are a good thing on a team. Different styles lead to different perspectives–and this can benefit everyone if they can find a way to capitalize on these differences. How do you handle working with people who have a completely different style of working and communicating than your own? What if you can’t find a middle ground to work together successfully across vastly different styles?

It's a great question. I think everyone communicates in unique ways. And while they might subscribe to the same means or mode of communication, we all communicate differently. And by that, I mean, some people wear their feelings on their sleeves and they're very overt regardless of the subject matter. Others play it a little bit closer to the vest. And, simultaneously, I think there are people comfortable speaking in a group, and then there are people who really loathe speaking in a group. So the trick, as a leader, I think, is to synthesize and give voice to all of those voices regardless of the way they like to chime in and communicate. And that can be tricky. I will admit. I, throughout my career, have recognized I am biased about people who talk slowly.

I tend to be very quick. I speak quick, and I think you gravitate to people who speak in the same cadence and manner as you do. And so I'm also impatient. And as I've gotten older, I think that patience has grown a little bit. But just being aware of the fact that, I need not I need to avoid judging someone who does not speak rapidly and instead who takes a lot of time and and chooses their words carefully and speaks slowly. So that's a very basic example of communication. But, more complex is how are they communicating, you know, their thoughts to you? Are they speaking them? Are they writing them? Are they preferential to putting things in email or text, or do they night not like to put things in writing?

I'm someone who uses all modes of communication, and I genuinely like to write. I can be pretty verbose. And in this day and age, that is frowned upon. People do not read. They don't like to read. As as someone recently said, they hate reading my 12 paragraphs in network update, which we produce, which is one of the reasons I put a video together to sort of synthesize and and, make another mode of communication to anyone who either doesn't have the time or prefers not to read. What what is not usually 12 paragraphs, but but can be kind of lengthy network update messages. I do write them myself, and that's because I genuinely enjoy writing, but I I understand most people don't. So I think I think, as we just talked about in this last segment with Katy Kneas, technology has, in many ways, facilitated immediate and, ubiquitous communication among people all over the world, and that's wonderful. It's also reduced, I think, people's ability to want, to write and to be articulate in that writing and concise and interesting.

I find reading good writing really helps me understand issues better, and I will retain that written word far longer than I think I will retain the spoken word. So for me, that's kind of it. I don't know if I've answered this question. I think patience comes into play, and I think empathy, understanding, and respect for your colleagues and the people you're working with, and the the way they like to communicate, trying to respect and uphold that.