Charlie LaVallee: Retired CEO of Variety the Children's Charity and Child Advocate Discusses His Long Career with the Charity and His Long-Standing Friendship with Fred Rogers.

At Highmark Health, we believe what makes us unique makes us better. Our differences broaden our perspectives and foster a variety of skills to complement each other, creating a stronger and more vibrant workforce. It's this belief that earned us recognition as the Best Place to Work for the 10th year for individuals with disabilities in a survey by the American Association of People with Disabilities and Disability:IN. We'll continue to celebrate and benefit from the inclusion of all people. To find out more, visit highmarkhealth.org. Welcome to Disability Matters with your host Joyce Bender. All comments, views, and opinions expressed on the show are solely those of the host, guest, and callers. Now the host of Disability Matters, here's Joyce Bender.

Hey everyone, how are you today? Welcome to Disability Matters with Joyce Bender, and that's me. Joyce Bender. I am so thankful for all of you. You know, it's hard for even me to believe I've been on the air 30 years. Recently had my 1,000th episode. No, no, I'm sorry, I'm sorry, 20 years. I got that wrong because, uh, 30 years is the anniversary of my company. That's why I have that number in my mind, 30. Uh, but still, it's remarkable. And, you know, I have to tell you, it wouldn't happen if it weren't for you. You know, you can't have a car dealership if you don't sell cars, and you can't have a radio show if you don't have listeners. And you, you are— I, I just want you to know how much I appreciate every single one of you. Every one of you, because I feel like we're all together, like I have this big family. We're all together fighting the fight for quality of life for people with disabilities. So thank you, and thank you around the world. Oh my goodness, how could we have— it's 76 countries now, I think, listeners in 76 countries. How is that possible? It's possible because I have great followers around the world. I have to tell you, there are a few countries— Saudi Arabia, or maybe a country in Africa— where there's only one person. One. But you know what? You make a difference. One person can make a difference because you can go spread the news to other people. Hey, no matter where you are in the world, you know that people with disabilities have to deal with stigma and have to deal with being less than. And I know when I went to South Korea, Asia, Indonesia, Japan, Kazakhstan, Panama, no matter where I went, there were many people who did not want to say, "I'm living with a disability," especially my disability, epilepsy. Oh, that is shameful. Of course, I'm not ashamed because, you know, when you have epilepsy, you've got too many neurons firing off. That fits me. I've got the firepower. So, you know, thank you to everyone. Yoshiko, Yoshiko, I got your birthday card. And Yoshiko, what can I say? I love you. Lead On No Matter What, wife, widow of Justin Dart. Such a great person. Yoshiko, I know you're saying lead on right back to me. I know it. I know it. You know I love you, Yoshiko. And hi, Mark. Wow. They've been the sponsor of this show for years. Can you believe that? Lead sponsor of the show. Such a great company. Uh, David Holmberg, Karen Hanlon, and I was just talking to Charlie about Deb Bryce Johnson, and Deb is truly just phenomenal. She's awesome. She is a great leader, and I want to tell you, she cares. She has great faith, and she's a great person, and both Charlie and I love her very much. And speaking of Charlie Lavallee, oh my goodness, I'm so lucky to have him with me today. I love him. Let's start right there. I love him, but everyone loves him. If you know Charlie, you love him, or there's something wrong with you.

Everyone—

I've gotten on your nerves.

Yeah, and he will. If it's to fight the fight for children with disabilities, look out, there's no stopping the Chief Enthusiasm Officer, Chief Excitement Officer. I would say Chief Excellent Officer.

Thank you, Joyce Bender.

He is the best of the best. Like me, he has a true heart for children with disabilities. I mean, we both share this in common. We love children with disabilities so much. All children, but in our world, it's been children with disabilities, although prior, you know, Charlie did work with, uh, grieving children. So he's just a tremendous person and a close friend of the late, great, fabulous, wonderful Mr. Rogers. We are so lucky to claim him right here in Pittsburgh. Pennsylvania. We're so lucky about that. But Charlie, first, before I even start talking about that, how about a little bit about you, like where you grew up? I'm hearing in my mind somewhere bakery, something about a bakery, but where you grew up and then went on to school, and I know you moved on eventually to the Caring Place, but you were involved in a very big national product. So let's hear your story. Let's go to the bakery. Let's hear the story.

So, um, my grandparents were German immigrants who met in English-speaking school, got married quickly. It was the '20s, then had 3 kids, my uncle, my aunt, my uncle, my mom, and my aunt, in that order. Um, the first bakery was in Brookline, for anybody who knows the South Hills of Pittsburgh, but then the bakery where we were in for 50 years, was in Oakland by the hospitals and the universities. And it was a fabulous experience. My grandfather was the one who had such a dramatic impact on my life because we had a lot of sadness. My grandmother spent 50 years in a psychiatric institution, and I can't imagine having 3 children ages 4, 3, and 1, being only in a country so many years and then having to put your wife in a hospital from which she never came out. And, you know, that shaped him. And I think that's how it is with suffering and challenges. It either drives you to be a certain way or sadly you can go another way. No judgment of anybody of how they deal with suffering. So I got to go to Carnegie Mellon University But I had to be in the bakery working at 3 o'clock AM. And it was 10 minutes, the bakery was 10 minutes from Carnegie Mellon University, to whom I attended my classes in my baker clothes and smelled up every classroom. My friends waited for 4 years outside my first class. And God forbid if I forgot you wanted chocolate and I brought jelly or just glazed donuts. I said, I just made them. 20 minutes ago and they're free, and you want to tell me, well, I didn't bring the right kind. But the bakery was wonderful. And, um, uh, my grandfather, one time when I came in at 3 o'clock on the nose, Joyce Bender says to me, you're late. And I said, oh no, no sir, no sir, it's 3 o'clock. He said, no, you're supposed to be working at 3 o'clock, which many people here in our top— but then he added something He said to me, 'Are you going to embarrass me this way in front of our employees?' And I said, 'Wait a minute, take the knife out.' And he said, 'No, they know I love you more than my own life. If I can't talk to you, I can't talk to anybody here.' So throughout my whole career, people always ask me, 'How come you show up so darn early?' I said, 'Well, we got to go back 50 years. So I was 17, freshman in college, where my grandfather took me to school. And, um, it was a good lesson, um, because I got to see things from his perspective. And, uh, sadly he died when I was 18. And, um, it was a life-changing experience for me because I loved him more than anyone, and he really shaped me into the person I am. And, um, so yeah, that was, that was growing up. It was a I was gifted, you know, education was the big push because he was only 6th grade educated and he was going to make sure I got a good education, which I did. And although I remember they, when they would invite me back to Carnegie Mellon to speak in the H&S, Humanities and Social Sciences, they said, how did you go from here to working with the White House? I said, well, it's a long journey, but things I learned here were very very, very helpful to me. And then having partners like Fred Rogers and, and, um, Dr. Thomas Starzl— we had some good people who, who were, were with us, you know.

Now, what was your degree at Carnegie Mellon? What was it in?

Uh, history. And my mother could never figure out why I didn't go to Pitt, which was where she graduated. Pitt, Pitt is it, you know. And I could still see the bakery full of blue and yellow all the time whenever, um, the Panthers were playing some game or another, whatever sport it was. But I was fortunate to go to Carnegie Mellon, and it was a great experience. And, um, so yeah, you're smart if you went to Carnegie Mellon.

You are really an A student, I can already tell that, Charlie. What a great— you know, Carnegie Mellon has spun off like 40 or 50 companies, you know, technical, that are successful. It's amazing. Plus, they have a great acting theater.

Well, they do. They always do.

A lot of people don't know that, but they did. They do. Jeff Goldblum went to Carnegie Mellon.

Many, that's why, but not too many who are famous go for history.

Okay, what happened next? What happened after college?

So then I was doing campus ministry through a church back at Carnegie Mellon University. And it was a terrific experience, you know, because college and Carnegie Mellon, the pressure at CMU, quite frankly, like in the School of Architecture, they were typically up at least 2 nights every week, all night long. It was, it was a 5-year program into 4 years when I went. And I don't know how they did it. One time I was playing soccer there, which was a great experience. Because you got to play soccer with people from all over the world. There were a couple of times I think I was the only American or one of two Americans starting, but we're at halftime and the coach goes, where's Callaghan? Where's Callaghan? He was an architectural student. He was asleep under the trainer table. Wow. So here I remember that 50, 50-some years later, but CMU was a great, it was a great experience. I was blessed to go there and the people I met and the thinking. So then I'm doing campus ministry there, and while I was there at the church, Fred Rogers and I did a baptism together. And that's how our relationship— that's how it started. And then we got close. And so then, I don't know, this is a little bit of history for your listeners, but in the 1980s in Western Pennsylvania, which was the home of steel. Steel collapsed and we lost 150,000 jobs. It decimated Western Pennsylvania. I can remember driving along the river. Those mills are gone. I mean, but it was up on both sides of the river and it was devastating. Um, some of the steel workers sadly were taking their own lives. I mean, it was devastating. They didn't know how they were going to get by. And, um, so what happened was they started protesting in the churches. Shadyside, where I was, was one of them, and Fox Chapel Presbyterian Church, because that's where the steel executives went. So they came and protested there because they wanted to be heard. And Dr. John Galloway at Fox Chapel Presbyterian, he invited them to come up and speak to the pulpit. And which was beautiful to do that. And I love John. And one of the messages they said was, when we lost our jobs, we lost our healthcare coverage, and we lost it for our children. And if you look back in America into the 1980s, people didn't know about the uninsured. Now we all know it. You say the word— back then the word wasn't even familiar to people. And so John and another minister approached Gene Barone, who was the CEO of the predecessor to Highmark Blue Cross of Western Pennsylvania. And Gene was a Brookline boy. And so when he heard the— when he heard of the need, he said, we rolled up our sleeves and we got something done. And so the caring program for children, the Blue Cross Blue Shield caring program for children, was the first program of its kind for uninsured children. And we did some marvelous things with it. I commend the, the team. For example, we had no pre-existing condition, so you weren't going to be excluded. So if you have disabilities or cancer, whatever it is, you're not excluded. And that ended up going into whatever people think about ACA and Obamacare, but it went from us to CHIP, it kept being continued because we put it in in the beginning. So, you know, kudos to the team for, for putting that in. And then the other thing people didn't know, and this will surprise some of your listeners around the world, you could not get on Medicaid, which is the program for the poor in America, or those who are below poverty, but you had to be below poverty by half. It even sounds ridiculous to say it. So for sake of the argument, if poverty was $12,000 for a family of 4, You couldn't make more than $6,000 to get on Medicaid or medical assistance. Wow. So, you know, really, I think kind of a shameful part of our history that if you're in poverty, we need to help you, not if you are below poverty by half. And so the Caring Program filled in that gap and we started it and then we got a grant. It's called SPRANS from the Department of Health and Human Services, the Maternal and Child Health Bureau. But SPRANS means Special Project projects of regional and national significance. And maybe Bender ought to look into that, quite frankly. And because you have an idea and it's meant to be kind of like, is your idea workable in other parts of the country? And most of the time they don't succeed. But we replicated the Caring Program in 20 states. And I remember our grant officer saying to me, wow, Charlie, this is the first one I ever had that got replicated. 20 other states. That laid the foundation. But it's funny how I got to carrying the caring program, because there was a certain individual, Fred McFeely Rogers, who said, I have an idea what I would like you to consider. He always said it so nicely, but he wanted me to go. And I'm, I'm so grateful because I couldn't, wouldn't have missed it. So we replicated the caring program for children in 20 states. But that was the model for what's called CHIP, for your listeners, Children's Health Insurance Program, which was a government program that we administered in our area. But I don't, Joyce, honestly know what to do with it. The last number I heard was that CHIP, since it was created first in Pennsylvania, um, in, um, in 1992 and then started enrolling in '93, but then at the federal level through Congress. President Clinton was in office, and Senators Hatch and Kennedy, um, were the key sponsors, the Republican and Democrat working together beautifully, as it should be. People didn't know though, they thought Senator Hatch was just all Utah. Senator Hatch was a Baldwin boy, and so he was from the Pittsburgh area.

I didn't know he was a Baldwin boy. Yep.

And fascinatingly enough, we had the research being done on CHIP by the Graduate School of Public Health and the leader of the whole team over there, Dr. Edmund Ritchie, one of my real heroes who's 91 and still running stadium steps, God bless him. And but he's world renowned in evaluative research. He went to school with Senator Hatch and Senator Hatch came back for the high school reunions every year. So I took Dr. Ritchie with me down to meet with Senator Hatch because I knew of the trusting relationship they had. And I believe that was very important because Dr. Ritchie was able to show the data of how the program improved the kids' health. And it wasn't my, you know, it wasn't from a Blue Cross perspective. It was done by the Graduate School of Public Health. But I'll never forget, Senator Hatch saying, when I took Dr. Richie with me one time, Charlie, could you wait outside until Ed and I catch up? So I said, Senator, take your time as long as you'd like to. I'll just sit out in the other room. But you know how fortunate we were because last number I heard was that program has helped more than 330 million children since its inception.

Wow. What did I just say? One man, one decision. I hope you're all listening. See what can happen? Look what can happen.

Well, and so many then, it became so many partners got on board and, you know, we learned things and prioritized things and, you know, got the message out to people. Like we issued them a standard Blue Cross Blue Shield card, which is one of the things that steelworkers had asked for. They didn't ask for it. They just said, look, we don't want, they didn't want to get on. Medicaid, right, because they felt like less than. And back in those days in Pennsylvania, the card you got kind of advertised that you were low income. Well, they were proud people. They'd worked all their lives. And so giving them the Blue Cross Blue Shield card was the same card they had been using for their kids. So if we listen, Joyce, to your point, if we listen to those we're going to serve and not just come in with the ideas that we know it all, but we heard that theme You know, we don't want to be treated, you know, we don't want to be talked down to and treated poorly. And so it was perfect that they could get the same doctors. You know, we got great benefits. And so, you know, there's a lot of, I think, a lot of things we learned from. And then I had television spots with, one had Fred Rogers on it. And when the families would see it, they'd call up and they'd say, Mr. Rogers told me to call. Like they just talked to him. Mr. Rogers told me to call. But, you know, they trusted Fred and they knew he would be acting in their best interest. And the other person was a gentleman named Dr. Thomas Starzl, who was a world-famous pioneering surgeon, transplant surgeon, who ironically came in the bakery every day. That's how I first got to know him. And he'd have to have a glazed donut with my mom. I can still see the two of them chatting out in the store. And, you know, back then, again, we didn't have credibility. So to have Fred Rogers and Tom Starzl on TV, it was kind of a good seal, but it was a team, you know. We needed them. We needed credibility so that the moms and dads could go, well, you know, if Tom Starzl and Fred Rogers are behind it, okay, I'm gonna call, find out, see how I get my kids enrolled. And since, you know, their dignity wasn't disparaged at all, it was beautiful. And here we are later. I don't even know what to do with 300,000 30 million children. What— I, I don't even know how to think about that, quite frankly, except that it's a big number. And I think, you know, the Western Pennsylvania community, because it started out we had to raise the money— Western Pennsylvania should be very proud. But I think it should be example to all of us. Who knows, maybe the model is somewhere in California or Maine, or, you know, we learn from some other part of the world. Um, but, uh, I think, um, It was a privilege to be a part of that. On the bad days, I called up Fred and said, "It was your fault I took this job." He was always a good listener. And I think what happened next, I know you want to ask me about. You know, that was kind of like a community tragedy we had that sparked the caring program. Um, but then, um, in 1994, I found my 21-year-old stepson, um, dead in the park. And it was awful, and absolutely terrible. I still see it, you know, 31 years later. And it was trauma. And, um, the only time Fred Rogers gave me advice was he told me to take my broken heart and do something with it. And the only time I yelled at him was in response, saying, Fred, you were at the funeral with me last week. You want me to do something? It's pretty dark. And, um, I mean, you know, when you have a 6-year-old who looks you dead in the eyes and says, well, Dad, if Josh can die at 21, why can't you die at 40? You can't kind of say, oh, it won't happen. That's why Fred always spoke in the language of intentionality. I intend to be here. I intend to do something. Because, you know, children key into it. And so what was happening was there was not a resource, um, for kids who'd had a death. And I don't think we realized, but when we started Back then in, in 1994, um, 1 out of 20 kids in Pennsylvania had a death before they graduated high school. The number now is 1 out of 12.

Oh, oh, that's terrible.

Well, you know, we've had the drug epidemic, you know, West Virginia has been hit by hard by other states, and so I think we We don't understand children well enough. I mean, that was one of Fred's things when he, you know, he was an ordained Presbyterian minister who was commissioned to do children through the media. And, um, you know, he worked very closely with Dr. Margaret McFarland, who was, um, uh, a faculty member at the Pitt School of Medicine but also ran the Arsenal Family and Children's Center. And, um, You know, Margaret helped him understand kids, and, you know, Fred took a lot of courses when he was getting his, um, his theological degree. But Fred was right, we needed to have something that responded to the need. You know, how could we let children go? You know, we know death is hard enough for us. You know, you, you walk the road with Mary And, you know, we still talk about her, you and I. And, um, you know, he was of course always tuned in to children and what the impact of losing your mom or dad or, you know, brother or sister. And I had an experience when I retired from the work at Variety. One of the PNC executives took me out to lunch, and the waitress comes over and she goes, Charlie? And I'm going, I wonder who this is.

Oh, I know, I hate that.

And, and so then she introduces herself. I know immediately who she is. She's a mom now. She was in a group with my son Daniel, because the, the Caring Place that you referenced earlier is a center for children who've had a death. And it's not therapy, it's the idea— it's group support. You're with other kids. Who've had a death, or as my son said, a big death. And, um, so the idea is it's facilitated by, um, by volunteers. But instead of— people don't know how to talk to you when we're adults. You and I know this, we've been over this 5,000 times because we've lived it, let alone if you're a, you're a child and we don't know how to deal with you. And so, but what this waitress said to me was Charlie, I'm a better mom of my kids because I went through The Caring Place. And I thought, I thought, wow, is it— does it get any better than that? But again, going back to Fred and how real he was, so we started in Pittsburgh, uh, then we did one in Erie, and Erie, Pennsylvania, which is in the northwest corner for your listeners. We did another one in Harrisburg, one's been done now, Warndale. But I remember when Fred came to when we dedicated in Erie, and he's speaking and he gets choked up and starts to cry because he had gotten this book. People always wanted him to read, you know, proof something before it was published or something like that. And, um, but this boy writes in this, in this book that was going to be published, I miss my dad. And Fred chokes up, starts to cry some, and says, "I still miss my dad." And he was just so real. And it was many years earlier that his father had died. And he said, "I still miss my dad." And I thought he was so real. And that, I think, is one of our lessons for today. We need to be real like Fred Rogers was, real and authentic. And, um, you know, he, he was willing to accept emotion and willing to live with— for example, he would have been right with you in the loss of Mary. You know, he wouldn't have tried to minimize it or make you feel better. You know, we have to go, we have to live with it. And, um, you know, I can say as testimony that what we all need is a friend like Fred Rogers. For me, when Josh died, we read a lot of Henry Nowen, and we talked about it. And that's the great gift Fred gave to me. He was there with me. Oh, not just for the first week, but he was there and there and there and there. And we read and we talked, and, um, you know, there was no pretending. And, uh, it was, um, I don't know if I could have gotten through it without him. He was just, uh, he was so terrific. And So what the caring—

I will say, you did what he said. You took that heartbreak and look what you— look at all the children that you helped. And before we go to break, a couple stories Charlie told me. One, it— at the caring place, how the kids like to go into the box and then come out as if— they called it a time, like they were going into a time, uh, zone, time where they could go back in time. And then that way they would—

well, it was interesting. There were two things I'll say quickly before we go to break. It helped the kids and the parents because I remember I was leading an adult group, so the kids were in groups of their own ages, including preschool, because you couldn't do something with Fred Rogers unless you had preschool. And then the parents were in their own. And I remember this one mother one time goes, "I cry in the shower so my kids won't hear me." And this other mom goes, "Oh my God, me too. I thought I was the only one." And I think, you know, that feeling, if we can help people know they're not the only one, that somebody else is like them and walking down the road. And the kids, you know how hard it was When you had father-daughter dances at school, well, if your dad dies, who's, who's taking you? And how do you feel that you fit in? So having the place to talk about the feelings where no one was going to judge you or try to make you feel better, you know, just let you have your feelings. And there was a room called— we called the Expressions Room, where you could go in there. There was a punching bag. There was a bat. Sometimes you wanted to get your feelings out, you know, done in a safe way with one of the staff going with you, but you could express your feelings. And I must admit, uh, sometime maybe I had to go in there myself and express my feelings after some— I mean, Joyce, you know it because you've lived it. We have to— people, let— help people understand, live with us in our pain. You don't have to give us any answers, because what answer are you going to give a 6-year-old whose life has changed when his dad has died, for example, or his mom, or his grandfather? There's no real answer. I mean, even from a faith perspective, sometimes we say God needed another angel, and I heard one boy say one time, I needed my dad more than God did. Well, okay, you know, kind of hard, kind of hard to argue.

Good. Good way to make someone mad at God when you tell them that. Good boy. But hey, anyway, we got to go to break and then we're coming back, uh, with the great Charlie Lavallee that I love so much. Uh, but right now we're having our news break with Jennifer Mathis. Jennifer, are you there?

I am. I was enjoying this discussion so much that I want to go to break.

Well, you know what, Jennifer? And in case you all don't know, Jennifer Mathis, when she said yes, that she would do this every week, this news break, I like, I won, I won the lottery. I mean, Jennifer Mathis is famous. She is the supreme leader in at Baselon Center for all these legalities, and she's in the news and she's in the Times. In the post, and when she said yes, I said, oh, I am so thrilled, and I wanna tell you something. Oh, the name of this break, how could I forget? Mathis on the Mic. And I have to tell you, Jennifer, when Charlie was talking about people being there for you, you all know when Mary Brocker died. So close I was to Mary, our president. I was devastated. And one day, Holly O'Donnell, who is the CEO at Basilon, said, "Hey Joyce, I'm coming in as round 2." I said, "What?" "Oh yeah, we're the B group." And what she meant is there are people that are there for you at the beginning when you lose someone. But then that's it. You know what she did? I still have them. She sent me these little cards, and there would be a doughnut on the front, and it would sit right in there. Go have a good time. Have a doughnut. And she had all these little cards she sent me. I still have them. Round 2, the B group. She's so awesome. But anyway, Jennifer, You always have news. I know you can never think, oh, which thing should I talk about today? And Charlie, we are the only place anywhere where every week we have news for the disability community. You know, as I always say, we can't go to Ready MS Now— see, I have the name right— or CNN or anywhere and hear what's happening to us. But you can on this show. So, Jennifer, what do you have for us today?

So today I wanted to just highlight a couple of new resources that are out and will be coming out today from the Baseline Center and other partners that are both about how to preserve Medicaid for people with disabilities as we move forward with this One Big Beautiful Bill Act implementation that, you know, has the potential to boot millions of people off of the Medicaid rolls and Many of them who should, who are still eligible, but will just get caught up in red tape and will lose Medicaid because they didn't know how or when to submit their documentation, or, you know, didn't know that they were supposed to, or couldn't reach somebody on the phone and You know, all of those things that end up meaning people lose coverage even though they are eligible, even though they might be meeting these new work requirements that will go into effect, uh, starting next year, or even though they should be exempt from those work requirements based on what the law says. And there are a lot of disability groups that are exempt from these requirements, but You know, people are going to get caught up in red tape. So it's really important as we move forward that states have systems in place to prevent people from losing coverage inappropriately. And that's something that we should all be focused on. And now's the time to get states to start doing things correctly. And so One of the guides that we are putting out today, one of the things that we're putting out is a piece that we did together with the National Health Law Program and Justice in Aging. And this is gonna be on our website this afternoon. It's not there yet. It is called Recommendations for Mitigating Harms to People with Disabilities, Older Adults, and Caregivers. From Medicaid work requirements. And so it will be on our webpage starting, I think, sometime in the next 2 hours. And it's about an 8-page piece, and it's really aimed at states for the most part. And it has a bunch of recommendations of things that states can do and should do to make sure that people with disabilities, older adults, caregivers, aren't losing Medicaid when they are still eligible. And those things include, for example, things like describing in plain language who is covered by the exemptions, how each state interprets these exemptions, like people who are quote unquote medically frail or have special medical needs. There are different categories within that. People who have a disabling mental disorder. People who have a serious or complex medical condition, people with a physical or intellectual developmental disability that limits them in one activity of daily living. These are all categories and they have some discretion to interpret those, who's covered within those. And so there are things that states can do. For example, a lot of people with mental disabilities might not need help with that ADL, activity of daily living, like hands-on help, but they might need help with what's called IADLs, instrumental activities of daily living, like preparing a meal or using public transportation, those kinds of things, learning how to do those things. And so those things can be covered. States have to make that clear to people though. States have to make clear these categories of people are exempt. So that people know and they can do a lot of things. They can also— one thing they shouldn't do, for example, is actually require people to show they're unable to work. We think that's inconsistent with what the statute says and means. And so we have a whole bunch of recommendations for states that are in this document. That's one document. Then the Bazelon Center already has out— this is on our website right now— a new guide that we put out. This is for people with disabilities, for their advocates, for states. We did it with Corporation for Supportive Housing, and this is sort of similar, but this is a guide that's about what federal disability laws require. So the ADA, Section 504, we're seeing those laws, they actually require states to do some of these things. So it's not even just good policy. These things are the law that you actually have to set up your systems in a way that ensures equal opportunity for people with disabilities and makes reasonable modifications, reasonable changes to how you ordinarily do things. So that might include providing help to a person with a disability to navigate this process. You may have to have people who are on hand to help people through this process, help them figure out how to show this stuff that you're requiring them to show, to show they're exempt or they're meeting the work requirement. And that's one thing that states can do. They have to use the data they already have available to them, like maybe you know, your Medicaid claims data to show— like, they can use that to figure out themselves that you're exempt and not require you to provide— the enrollee or the applicant— to show those things yourself. In fact, the law says they actually have to use their own data first to try to figure it out. So they should be doing that. They have the option to simply allow people to attest, "I'm exempt for this reason," instead of providing documentation about it. So there are a lot of things in that document too, in that guide, that show how different things that states can do to comply with the disability rights laws. And I think what's different about that document is it's about the laws that states already have to comply with, the ADA 504, Section 1557 of the Affordable Care Act. So they have obligations to ensure equal opportunity, to provide reasonable modifications. So they have to do some of these things. And so we lay out what some of those— some of those obligations are and how they can meet them. And so it's similar to the other guide, but it's focused on the things you have to do. So both of those things are on our website, or actually one is on our website, one will be on our website in an hour or two. And I think they're both helpful for advocates to know what they should be going to their states and saying you should be doing.

What I have to say about this, don't be in the dark. Don't be left out. Now you have a really good source right here, by the way. It's Bazelon, capital B-A-Z as in zebra, E-L-O-N, B-A-Z-E-L-O-N dot org, which, by the way, I'm so proud to be on the board. But Bazelon.org, go get that and I— that— share it. If you have family members or other people, share it. And we're going to talk about it again Jennifer, actually, all the time. Because I want to make sure that people do something about this. So, Jennifer, thank you so much for being with us. Always a pleasure, and we will talk to you next week.

Thank you. Take care.

All right. Bye-bye. She is so awesome. I mean, just so refreshing to know we have that. Resource. Um, Charlie, I would be remiss if I did not, before the end of the show, let you talk about Variety, the children's charity, which was your last venture as CEO. See, he keeps going, Chip, Caring Place, Variety, now being bothered by Joyce Bender at all times. But, uh, Charlie, tell our listeners about Variety. I just want to mention who no one knew. I go to people and I'd say Variety, they'd say Variety, what's that? And then Along Came Charlie, LaValle, and pretty soon it's on the news, it's everywhere. So Charlie, tell our listeners about Variety.

Well, Variety was founded in Pittsburgh, Pennsylvania, uh, almost 100 years. It's coming up to the 100-year anniversary and, um, The Variety organization in Pittsburgh, Variety Pittsburgh, is focused on kids with disabilities. And I think, again, part of the challenge for so many of us is that, um, we don't have contact. So let me give you kind of a way in for me. My sister-in-law has Down syndrome. She's 57 years old and she works in a sheltered workshop in Pennsylvania. And there was a bill several years ago to want to get rid of all the sheltered workshops and streamline, get all these people in, into the system, into regular paying jobs. Well, I'm not sure that was the best thing, quite frankly, because the sheltered workshops have a place. Like, it's important for my sister-in-law. She gets to work. We go over it every night. She, she works and she feels good about it. But could she be in an environment that's focused on profit? No. So we have to have a strategy that works with both. But that's just a little segue into it. So she can't say Charlie, so I am Charlene to her. And every night when we talk because I've been doing this routine now, I think I'm just about 2 years in a couple of days. I don't know, I started it out a couple years ago. She loves bingo, so she, she's getting ready to come to our house again. So every night she'll say to my wife when she's talking to her, where's Charlene? And I have to do the routine every night, and it's about bingo. And so I talk about, here's the numbers, Joyce, and I might quiz you on them later. B12, I19, N34. Bingo, Kathy, Peppa, Sergie. Bingo, Kathy, Peppa, Sergie. She gets such joy out of it, and I've gotten such joy out of being Charlene. And I wish from the depths of my heart, the people who you're speaking to today around the world, when you have contact— sometimes I think we're afraid to be— if we were honest, We're afraid to connect with certain people with disabilities. My sister-in-law has changed my life. Her joy— she's clapping along with me every night. I— she's requesting— I'm 2 years— every night, 7 o'clock, she calls. But I've been changed. By whom? By her. She has Down syndrome. So I think the preconceived notions we have, we have to be willing to put aside. And open our hearts. That our— I'm a better person because of her. When I see her joy out of my doing B12, I19, and 34 every night, it's priceless to me. I would be not who I am without her. So I would just like to encourage all your listeners and viewers, um, leave your heart open. To connect. And just because someone has a disability, don't push them away. Be open. And sure, you might not know what to do sometimes. Yeah, okay, that's just no different than our other relationships. So, so anyway, I went to Variety, and, um, the first thing we did were— and I want to get to my voice because I know you asked me to— but the first thing we did was adaptive bikes for kids with disabilities. Because what the challenge was, was the kids were being left out. Everybody else is outside— well, not now because it's winter here in Pittsburgh— but they're riding their bikes. Well, why? Because you have a challenge, a disability. What are we just gonna say, oh, you can't do it? So we found adaptive bikes and we raised the money from the community. And like the Labor Day parade that just happened in Pittsburgh, is the biggest Labor Day parade in the country. Who's at the very front of the parade? Variety kids riding their adaptive bikes, wearing their red t-shirts, with the staff and volunteers cheering them on. I mean, why can't they be included? I mean, it's— we're asking the wrong questions. They should be, and we need to find ways. And I'll never forget this one boy, um, 17, and, you know, his dad was a veteran. His mom's fighting cancer, and we got him the bike, and he got to ride with the kids in the neighborhood for the first time. And then having this device, we could talk about my voice. When all the kids would go into the one young man's garage after they rode, he could now take out his device and talk with them. He wasn't left out anymore. He could do the whole thing. And so I think you know, this cool thing about looking at where are our kids who have disabilities left out and what can we do to change that, let alone the exercise. I remember this one single mom, her 8-year-old, all he wanted to do, she told me, was watch TV. Okay, I see the clue there, thank you. Watch TV. And so they got the bike, he rode it in the afternoon, but then he says to his mom, right after dinner, can I watch TV? And mom says, yeah, as long as you're riding the bike, because we give him a stationary stand. So that she's talking to me like this, Charlie, he's riding the bike while he's watching TV and he thinks he's getting over on me. Typical parental thing. So okay, that's my bike, and every child should be able to ride a bike, and we need to lean into that. On the other hand, I think more significant is we had a lot of kids who did not have a voice, and we gave them a communication device. And, um, uh, well, here's a little— here's a little thing. Can you— will you be able to hear this? So this is a boy who, when we met him at 5, he had 2 words. And when I retired, he gave this to me.

I love you, Charlie. Tyler.

So what he, what he says is— you heard him in his own voice. He's talking with his own voice. And this is the most cherished gift. People think there are all kinds of things, but of all the years at Variety, my little penguin Build-A-Bear where I hear Tyler's voice, and I asked him, what should we name it? He took his name Tyler and mine Charlie and put it together. This is Tarly. Joyce Bender, I'm glad for you to meet Tarley.

And then I just want to say one thing about this. Do you all understand? No, whether it's cerebral palsy or autism, whatever the disability is, unable to process and speak. Do you have any idea what that's like? When you can talk. Oh my goodness. I mean, it's just— okay. Here's what I wanna say. Charlie, you have— we have so much we have not gone over yet. And you know what that means? I have to have you back on.

I know you.

January or February because, you know why, Charlie? You are a joy. And you give hope. Just so you know, I've had all these famous people on. You're the only person Jennifer Mathis ever said, oh, I like that so much. I didn't want to go to break. So there you got it. You know why? You give joy. You do. I just appreciate you so much, Joyce. Right back to you. Because of that, you're stuck being back on again. And you know what? It's worth it. You're helping people.

Well, let's close with this. So we had, we had a 4-year-old. We gave her a device. She had no words. And I went to her house to do a news story. Her therapist, speech-language pathologist, worked with her. And I'm leaving her house and I say, goodbye, Mia, thank you so much for helping us help other kids. She goes, adiós, Charlie. And I look at her mom and I go, wait a minute, I knew her before she could have a word of English she could say, and now she's speaking to me in Spanish to say goodbye. So I think it's the possibility. We must commit ourselves to the possibilities for the kids with disabilities. And I think what Pennsylvania can do is establish a model again like CHIP that could be replicated across the country. And that's— we need to find the people in Pennsylvania who want to raise this model up, that it goes into Pennsylvania and then throughout the entire United States, because the devices are only $1,000. Come on, everybody, that's not— that should not be the barrier to every child having a voice.

Amen.

I knew you'd feel it.

Amen. Well, we're gonna have Charlie back on, uh, because we have so much more to talk about, and, and it's so wonderful to give joy this time of the year. But here's the thing, it should be all year. That's the thing, it should be all year. So we end every show with a quote, and here it is. I know you know it. There are 3 ways to ultimate success. The first way is to be kind. The second way is to be kind. The third way is to be kind, said the great Mr. Rogers. This is Joyce Bender, America's Voice, where disability matters, at voiceamerica.com. Hey, talk to you all next week with the president of Geneva College, Kelvin Traub. But in the words of Mary Brooker, When you get up tomorrow, remember, choose joy, and I will say you can't go wrong. Talk to you all next week.

Thanks, Joyce Bender.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific time and 2 PM Eastern time for another installment of Disability Matters right here on the Voice America America Variety Channel. We are the leader in live internet talk radio. VoiceAmerica.com.