National Disability Radio

National Disability Rights Network
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An insightful podcast by the National Disability Rights Network offering advocacy tools, heartfelt storytelling, and real-world policy insights—accessible whether you’re an advocate in the field or just someone who cares deeply about disability rights.

  1. 2D AGO

    "I Identify as Blind" - disability pride, music and unmasking with Lachi

    On this episode of National Disability Radio, we sit down with award-winning recording artist, advocate, and author Lachi for a powerful conversation about disability pride, music, and unmasking. Lachi shares her journey, from navigating the music industry as a blind artist, to founding RAMPD, a coalition amplifying disability culture across the industry. We talk about what it means to say “I identify as blind,” move beyond the medical and social models of disability into a cultural model rooted in identity and joy, and remind listeners that no one can defeat someone who hasn’t given up. From glam canes to Grammy stages, this episode is about claiming space, rejecting internalized ableism, and turning perceived flaws into flexes. Transcript: Alden Blevins: It’s Lachi? I feel very- Lachi: Lachi like Versace. Alden Blevins: Lachi like… Oh, I love that. Michelle Bishop: That is the best way to explain it. Lachi: I mean, but you know what I’m saying? Come on. Alden Blevins: Well, we’re really excited about having you today because we’re all music lovers in this group here. Michelle Bishop: Yes. Alden Blevins: We talk about music all the time. Michelle Bishop: So much. Lachi: Good, good, good, good, good, good, good. I’m in the right place. Michelle Bishop: Hi everyone. Welcome back to National Disability Radio, the official podcast of the National Disability Rights Network. I am Michelle Bishop, 1/3 of your podcast hosting team. Stephanie Flynt McEben: And I’m Stephanie Flynt McEben, public policy analyst here at NDRN. Alden Blevins: I am Alden. I am a communication specialist at NDRN and I am so excited today, like I mentioned, we’re all lovers of music, so we got a guest that I’m really excited about. Lachi is an award-winning recording artist and a recording Academy Grammy’s national trustee. She’s also a disability advocate who’s been breaking barriers in the music industry and beyond. She’s the founder of RAMPD, which by the way, is such a fun play name. I really love that. And the author of the upcoming book, I Identify as Blind. So without further ado, Michelle, you’ve got some questions to kick us off, I think. Michelle Bishop: Yes. We’re so excited to have you with us. As Alden said, we are. We’re huge music lovers. I’m pretty sure we spend most of our meetings where we allegedly plan this podcast just talking about music. So you’re absolutely in the right place today, but to get us started, I mean, you’ve been open about the fact, and I’m just really interested in this as a disability rights podcast. You’ve been really open about the fact that it took you some time to really embrace your identity as a blind and disabled woman, especially in the industry that you’re in that often really rewards conformity. Can you tell us a little bit more about that journey for you, both as an artist and as someone navigating just the world with a disability? Lachi: Okay. Yeah, for sure. Hey, everybody. Lachi here, Lachi like Versace. I am a Black woman with cornrows, chilling here in New York in my studio. I also identify as blind, I identify as neurodivergent, and I identify as an Aries. So do with that what you will. Michelle Bishop: All the important points right there. Lachi: All the important points like name, age, sign. Thank you. Okay. Yeah, but I’m really glad to be here. And thank you for that question, and thank you for having me. So music has always been a very integral part of my life of growing up. Where other babies would kick in the womb, when she was pregnant with me, I was playing the piano in the womb. I don’t know how she got a piano in there, but she’s not a liar, so I’m going to take her word for it. When I was super-duper young, I didn’t really have a lot of friends, especially because of the fact that I had differences and this and that. And so I would take to music to, I guess, understand the world better and have the world understand me better. I just knew how to express myself through song and it just said the things I needed to say. It was the prayer I needed. And because of music, I started to find confidence in how to speak and how to behave and how to act. And as I got older, when I was growing up, disability was not necessarily a thing people talked about a lot in schools and teachers didn’t know what to do. My parents didn’t really know what to do. And so I would always just turn to music. It’s actually right now I’m working on a children’s album because I think that kids need to hear music that has to do with disability and neurodivergence, as well as their parents as they grow up. When I got into college, I started wanting to do music, but I studied business and finance because when I told my parents I wanted to do music, they were like, “That’s not how you spell doctor.” because they are Nigerian immigrants and everybody else in my family went to either med school and blah, blah, blah. And I was like, “No, I want to do music.” But I did get a day job after school, after college, and didn’t love it because this girl is not going to exist behind a desk. So I ended up going to South by Southwest and I got signed actually from playing the guitar at a hole in the wall spot that nobody was at, except for this A&R apparently. So we got signed to an imprint under EMI, which was a major label back then, and we started touring and music then became my life. Now today, why wouldn’t I pay my respects back to music? I mean, it’s because of music that I was able to really lean into who I am, my disability, my confidence, et cetera. So because of that, because of how much music has given to me in my life, I’m here using music to give back to other people with disabilities. Now, your question was essentially, how do you sit here and try to bring about change for disability in an industry that is not only about conformity, but also about like, “Hey, pick me to exploit.” is essentially what the music industry is. You’re raising your hand to be exploited and that’s what kind of authenticity is that? But at the end of the day, music is some of the truest forms of storytelling. And I think to myself, just the way that hip hop has amplified Black culture and the way that country music has amplified rural culture and the way that different global musics have represented different global cultures. I want to use music to amplify disability culture. I want to use music to amplify disability stories and feelings that are difficult to put words to, that are words of the soul, which is essentially what music is. And so I started going to studios and realizing things weren’t as accessible as they should be. I started speaking with organizations and realizing things weren’t as inclusive as they should be. And the response I kept getting was like, “Oh, well, there’s nobody with a disability in the music industry, so why would we make these measures?” And so I have made it my life’s goal through RAMPD, which by the way, the best thing we ever accomplished was our acronym, not us working with the Grammys to get sign language on the red carpet, not us getting these partnerships with title, Live Nation, Spotify. I mean, we’ve done so much, not just for artists, but also for professionals. And we’ve started to realize something really interesting with the work we’ve done with RAMPD. We are getting people joining our membership who are director level folks, who are label owners, who are like the big wigs that write the checks, and they’re like, “I’m neurodivergent. I’m actually hard of hearing. I have a TBI.” And so when I originally set out, they said, “We don’t do disability inclusion because nobody’s disabled.” That was three years ago. Now I’m like, not only are there neurodivergent and disabled music professionals out here, but we all are. So really to conclude, it’s just that everyone is navigating trying to make it out in this world, but everyone’s masking. Everyone feels that they have to change some part of themselves to be as close as they can to what success looks like, be as close as they can to what “beauty” looks like, what winning looks like. But really all it is internalized ableism. And I say, as soon as we drop that internalized ableism and we really start to sit in who we truly are and we start to recognize our perceived flaws as flexes, that’s when we truly start to win. And so that’s what we’re finding out with RAMPD, that people are like, “You know what? I’m tired of navigating this difficult industry with the added layer of having to mask.” And so that’s why I do what I do. Michelle Bishop: Yes. And honestly, as ridiculous as it sounds that they say to you, “Oh, there aren’t any people with disabilities.” When I tell you, we see that in everything that we do. I do voting work at NDRN and we’ll have elections officials tell us, “This polling place isn’t accessible, but there aren’t any people with disabilities that vote here.” And it’s like, “What? You realize we’re everywhere and we do all sorts of things.” Maybe the reason they think there’s no people with disabilities here is because they’re stuck outside and they can’t get in because you didn’t make it accessible, just a thought. But I mean, it sounds like coming up against all that is really, correct me if I’m wrong, helped you to develop that identity and that disability pride in the industry. When did you first say, “I identify as blind.” and what did that mean for you? Lachi: Well, so when I first came into really doing the disability thing, really leaning in, I wanted to find out more influencers or thought leaders and such with disabilities. I didn’t really know that many people. This is pre COVID, 2018, 2019, that kind of thing. And so I came across an influencer, her name is Molly Burke, and we’r

    42 min

  2. 11/14/2025

    Alden's AuDHD Journey

    Alden Blevins, the newest host of National Disability Radio, has a personal journey with autism and ADHD that has shaped her perspective on disability rights and advocacy. Alden was misdiagnosed with anxiety and depression as a child, and did not receive the correct diagnosis of autism and ADHD until her late 20s. Alden describes her experience navigating the workplace and healthcare systems as an autistic individual, emphasizing the challenges of “passing” as neurotypical and the importance of self-accommodating. We also discuss the evolving public perception and representation of autism, noting that while awareness has increased, the diversity of the autistic experience is often overlooked. When it comes to policy and advocacy, Alden highlights the need for greater autistic representation and input, as the perspectives of those with high support needs or who use augmentative communication are often left out of importangt onversations To recharge and find joy, the PodSquad turns to their interests, particularly music and pop culture, which play an important role in ever important their self-advocate self-care regime. To view or download the full transcript, click here. Michelle Bishop: How could we not talk about Taylor getting engaged and dropping a new album? Stephanie Flynt McEben: Yes. Oh my gosh. Michelle Bishop: Taylor, she understood the assignment and she was like, “The world needs me to bring them joy right now.” Stephanie Flynt McEben: Yes. Alden Blevins: Oh, absolutely. I’ve been totally enjoying some good escapism by entering into the Taylor verse, and that’s been helpful for my mental health as of late, so. Michelle Bishop: Maybe we should do our podcast. Stephanie Flynt McEben: Welcome to National Disability Radio. Alden Blevins: Let’s go ahead and do that. So I’m the newbie here in the mix today. Stephanie Flynt McEben: Yay. Alden Blevins: Yes. But I will welcome everybody to National Disability Radio and introduce myself and say that I am Alden Blevins. I am a new addition to the NDRN team. I started last year around November. Before that, I happened to work at the Virginia Protection and Advocacy organization, disAbility Law Center of Virginia for two years. So I have learned a lot from the PNAs in the disability community, and I’m super stoked to be here today. Michelle Bishop: Love it. Welcome. Alden Blevins: Yeah. Michelle Bishop: Stephanie, were you going to introduce yourself? Stephanie Flynt McEben: I was just going to say, Alden, we are super excited to have you as a producer and host. So yeah, we are super excited to have you with us on our pod squad team. But yeah, I’m Stephanie Flynt McEben and I am NDRN’s public policy analyst and I guess it’s one third now, one third of your podcast hosts. Michelle Bishop: One third, one third. I’m Michelle Bishop. I’m the manager for voter access and engagement, and I usually have to introduce myself first every single episode, so looking- Alden Blevins: Oh, wow. I didn’t mean to steal your thunder. I just wanted us to get into the mix. Michelle Bishop: And I know you’ve got hella professional experience, but also one of the things we highlight on National Disability Radio is also the lived experience of having a disability and why that is also as important and as valid and useful as the professional experience and data and that sort of thing. Alden Blevins: Absolutely. So I have my own experience with disabilities. I identify, as the kids say, AuDHD, meaning I both have autism and ADHD, and that has shaped so much about how I moved through the world. Other than that, some more lived experience I have is that I started my career out working in public education, which just happened to teach me a lot about the systems and the barriers that everyday people face. And in addition to my own lived experience with disability, my mom is also a power chair user. Sometimes she uses a walker. She uses various mobility aids. She’s had a disability for most of my life growing up, so while I bring my own perspective, I’ve also got a lot of experience with a different type of disability through my experiences growing up with my mom. Michelle Bishop: I’m sorry, did you call it AuDHD? I’ve never heard that before. That’s amazing. Alden Blevins: Yes. AuDHD. A-U-D-H-D. Michelle Bishop: Yes. I love it, I love it. We’re already learning new things. This episode is about you as our new pro host. So back us all the way up. Let’s let our listeners get to know you a little bit. Can you talk about your journey to joining NDRN? Alden Blevins: Yeah, absolutely. So like I mentioned, I did start out working in public education and from there I moved into nonprofit work first with the National Alliance on Mental Illness of Virginia. And then again with the Virginia PNA, the disAbility Law Center of Virginia. I feel like each step to getting to NCRN has been a new layer of experiencing how disability rights touches every aspect of our lives. I feel like I’ve really learned a ton. And today I see the world through the lens of ableism, and I want to be in a world where people with disabilities, whether visible or invisible, are valued for who they are. At its core, I believe people like me deserve to exist and know that we are valid to show up however we show up. Stephanie Flynt McEben: Alden, I know that you’ve talked a little bit about your experience and what interested you in joining NDRN and the network. Can you talk a little bit more about what disability rights work means to you personally? I know that for me, that’s just something that we automatically connect to. I know for me as a multiply disabled person, that’s definitely something that I take with me when it comes to doing my work from the day-to-day. And I imagine that you’ve got similar points, but would love to hear you expand a little bit more on that. Alden Blevins: Yeah, absolutely. Again, I see everything through that lens of ableism because of my own personal lived experiences. I have my own things that have happened to me through the lens of employment, through the lens of healthcare that are related to my own disabilities. So when I hear stories of other people struggling with some of the same instances of ableism or the same barriers that I struggled with, I’m able to really empathize with them and put myself in their shoes. So I think that my own disability identity has definitely helped me understand better what the world of disability rights means and why people maybe have more pride or try to cultivate that self-acceptance in their disability identities because I think that’s what feels the best and the most affirming to me. And I try to bring that to my work here at NDRN. Michelle Bishop: 100%. Absolutely. Disability, we talk about it all day every day in this work that we do on this podcast, but it’s not this abstract thing. Disability and disability rights are very real. It’s something that we live every day. It shapes so much about our lives, our personal lives and our work. Can you walk us through that journey for you? You talked about how it impacted your education, you and the workplace, healthcare advocacy. Can we take it back to, tell me about young Alden? Did you know you had AuDHD at the time when you were in school? And how did that impact you? Alden Blevins: I definitely did not know that I had autism and ADHD. I went through some processes of misdiagnosis. When I was really small, I was diagnosed with anxiety and depression at age 10 due to extreme fluctuations in behavior and my ability to cope. They were interpreted by my family as dramatic moods or tantrums, but what I was actually experiencing were autistic meltdowns. But because clinicians in the ’90s didn’t really see me or any young girls for that matter as autistic, they missed the root causes of my behavior. I began taking anxiety meds and I continued with that all throughout high school and early college, but there were still a lot of other sensory and social things that the diagnosis just didn’t explain. I always knew there was something different about me. I remember feeling like an alien as a very little kid, and I did continue to struggle a lot with meltdowns and mood regulation through early adulthood. Alden Blevins: I was misdiagnosed with that anxiety and depression for years. Later, I eventually acquired another misdiagnosis of bipolar. The clinicians just generally lacked knowledge about how autism presents in women and girls throughout the 90s and 2000s. And especially because I had already made it to adulthood without the diagnosis, they didn’t necessarily have the knowledge to interpret what do these symptoms look like on an adult woman. I get the comment a lot of like, “You’re nothing like my 8-year-old nephew who loves trains.” And I’m like, “I am a 32-year-old woman, so I am different from your 8-year-old nephew.” And sometimes people don’t necessarily realize what that diagnosis can look like kind of on different people. Alden Blevins: But once I finally did get my diagnosis of autism and ADHD, I began self-accommodating. The diagnosis really gave me the confidence to claim my place in the disability community. And I began starting thinking about myself as a member of the disability community. But before that I didn’t, which is honestly a little silly because under my old diagnoses of anxiety and depression, I was struggling just as much, but that didn’t feel like to me a valid enough explanation for everything or a reason to need extra help. These labels fit me better, that they were really helpful for me in contextualizing what were the root causes of some of the things I was experiencing. So no, little Alden did not know at all, and she did not find out fully until she was 29 years old. So it’s been a journey. Stephanie Flynt McEben: I can only imag

    30 min

  3. 08/28/2025

    And Then There Were 2

    Jack is going off to law school. So the gang sits down to reminisce on his time at NDRN, share a few stories from behind the scenes, and hear a joke from Stephanie that gets a good laugh out of us.

  4. 07/24/2025

    Senator Tom Harkin

    We wrap up our series on the battle for the passage of the ADA with none other than Senator Tom Harkin. Senator Harkin was the lead sponsor of the ADA in the Senate and has spent his career being a steadfast ally to the disability community. In this interview we talk to him about what that was like, where we need to go from here, and he even stumps us with a bit of disability rights trivia. Full transcript available at: https://www.ndrn.org/resource/ndr-harkin/ Michelle Bishop: Welcome back to another episode of National Disability Radio. This is the final in our series on the anniversary of the ADA. So before we jump into a very special guest that we have for you this episode, I am one of your podcast hosts, Michelle Bishop, the voter access and engagement manager at NDRN. Stephanie Flynt McEben: And I’m Stephanie Flynt McEben, public policy analyst here at NDRN, and another host, or one of our other hosts, for our podcast today. Michelle Bishop: Okay. Clearly taking his side, Stephanie. Clearly taking his side. Stephanie Flynt McEben: Okay. Okay. But Jack has proven that he is worthy of host, Michelle Bishop: Producer and pro host extraordinaire, please introduce yourself. Jack Rosen: Thank you, Stephanie. I appreciate the support. Hi, producer and host, Jack Rosen, here. Really excited about today’s episode. This guest has been at the top of our wish list for a while now, and we are so thrilled to have him on. So I suppose we want to just get into it. Michelle, why don’t you tell the folks that we have on today? Michelle Bishop: We’re really excited today to be talking to the honorable Senator Tom Harkin, who was so instrumental in so much of the early disability rights movement and passage of the ADA. In 1974, Tom Harkin was elected to Congress from Iowa’s 5th Congressional District. In 1984, after serving 10 years in the US House of Representatives, Senator Harkin was elected to the Senate and reelected in 1990, 1996, 2002, and 2008. He retired from the US Senate in January of 2015. I use the term retired loosely. He is still very active in the movement. As a young senator, Tom was tapped by Senator Ted Kennedy to craft legislation to protect the civil rights of millions of Americans with physical and mental disabilities. He knew firsthand about the challenges facing people with disabilities from his late brother Frank, who was deaf from an early age. What emerged from that process would later become his signature legislative achievement, the Americans with Disabilities Act. In September 2009, following the death of Senator Ted Kennedy, Senator Harkin became chairman of the Senate Health Education, Labor and Pensions, or as we know it, HELP Committee. Senator Harkin believed that to serve in this capacity was to carry on the legacy which helped lead to the passage of the Affordable Care Act. In 2015, Senator Harkin and Ruth Harkin establish the Harkin Institute for Public Policy and Citizen Engagement at Drake University in Des Moines, Iowa to inform citizens, inspire creative cooperation, and catalyze change on issues of social justice, fairness, and opportunity. The institute works to improve the lives of all Americans by giving policymakers access to high quality information and engaging citizens as active participants in the formation of public policy. Senator Harkin, thank you so much for joining us today. Jack Rosen: So we’re sitting here today with Senator Tom Harkin for our series commemorating the 35th Anniversary of the passage of the ADA. This is Producer Jack Rosen. I am joined by my co-hosts, Michelle Bishop and Stephanie Flynt. And to kick things off, we wanted to ask you, one thing we’ve found when talking to some of the folks who were involved in the passage of the ADA is that they recalled that was quite a fight to get people with HIV, AIDS and mental illness, as well as substance use disorders covered at the time, especially being 1990 and there was a lot of stigmatization of people with HIV, AIDS. Could you talk a little bit about that fight and why it was important for you to make sure those groups were included? Senator Harkin: Well, yes, because we didn’t want to leave any element of a disability group out of the coverage of the bill, want to be comprehensive. You start carving out one group, then there’s somebody else will carve out somebody else and the thing falls apart. The HIV, AIDS thing came up because there was so much misinformation about AIDS and how people got it. And a lot of it, let’s face it, was based on homophobia at that time. And we had some purveyors in the country and in the Senate of that kind of discrimination. Former Senator Jesse Helms of North Carolina is predominant among that. And so they tried to do whatever they could to carve out that portion of our populace. Well, we were successful in the Senate in keeping it out, but the House at the last minute added what was called the Chapman Amendment. Chapman was a congressman from Texas. I think that’s right, from Texas. And at the last minute they added the Chapman Amendment to preclude coverage of the ADA for anybody with HIV or AIDS. It wasn’t just AIDS, it was HIV too, a huge populace. Well, as we pointed out at the time, everyone thought well, you only got HIV if you were practicing unsafe, same-sex. But we knew from medical studies and stuff that that just wasn’t so, it was absolutely not so at all. Well, Chapman Amendment came on at the last minute. Now keep this in mind, it’s a little bit in the weeds here on legislation. But we had passed our bill in September of 1989. It went to the House, got stuck in the House all winter until we had what was called the Capitol Crawl in March. After that, it began to get loosened up and we got it through the House, but not until the last minute the Chapman Amendment was at. And so when we went to conference… Okay, so the Senate had one bill, the House had another bill. When we went to conference, the Senate voted to instruct conferees as did the house, to instruct conferees to accept the Chapman Amendment. Well, of course, I’m the head of the subcommittee. I’m the person leading the charge on this and negotiating with the house. And we met with the disability community. And basically, I’ll tell you, the disability committee held together. They said, “If they’re out, we’re out. We won’t have a bill.” They had worked for so long and so hard to get this done. Well, so here’s what happened. We enlisted a person who had been sort of with us all along, but sort of dragged along kicking and screaming, and that was Senator Orrin Hatch of Utah. And finally, the disability community came to him and some people he knew in Utah and said, “Look, we can’t afford to let this bill die. We got to save this bill.” And so a few people came to meet with Senator Hatch and convinced him to have a substitute for the Chapman Amendment that basically said that in disregard of HIV, AIDS, et cetera, that we would rely upon the latest and best medical and scientific studies and results in order to determine the further course of action. Anyway, it was just… got rid of the Chapman Amendment and substituted this language of we’ll take the latest scientific… And we sold it on that basis. We sold it to the Senate, even though they instructed them to accept the Chapman Amendment. We went back to them and said, “Look, this is a great compromise. Who can argue that we shouldn’t use the best scientific and medical information and data?” And that’s what we did, and that was the end of it. And so then the House went back and they passed it and it came back to the Senate and we substituted our bill, because we had some different things in it. So we took my bill, the bill we’d drafted and made it the final bill and sent it to the White House. That’s a long story, but it was very involved. Michelle Bishop: It’s actually one of my favorite stories, though, I have to say, Senator, about the passage of the ADA. It was such a moment in time and the way that the disability rights community really stood together- Senator Harkin: Yeah, you did. Michelle Bishop: … in a business where it would be very easy to say, “Okay, we’ll cut these folks out and we’ll get this for the rest of us.” The way the community really stood together and the way that you released stood your ground as well for what was right for people with disabilities. Senator Harkin: Well, I’ll tell you a little story that happened before, before the Chapman Amendment, but it was right about that same time. We still had some people in the disability community that were just… They wanted this, they wanted that, and I understood that. So I got Pat Wright and some others too from California. Who am I thinking of? I just lost the name in my… Anyway, Pat Wright was there from Oakland. Who am I thinking of? The Ed Roberts Center? Michelle Bishop: Yes. It’s actually the original independent living center in Berkeley, the Ed Roberts and the Rolling Quads and… Senator Harkin: What’s it called? It was called… There’s just been a disconnect between my brain and my vocal cords. Michelle Bishop: Sir, that happens to me frequently. Stephanie Flynt McEben: Yeah, same. Senator Harkin: Okay, back up. So Pat Wright, who had been with us from the very beginning, fighting for this from the outside, so I got Pat and I said, “Look, bring together as many in the disability community you can, and we’re going to meet in that big hearing room in the Dirksen building that I had jurisdiction over.” And it was like five o’clock in the afternoon and it was packed. Everyone was there. National Federation of the Blind, National Association of the Deaf, Cerebral Palsy, on and on and on and on and on and on. They were all there. And I had Bobby Silverstein with me. And Bobby was my staff director who really, really probably single-h

    48 min

  5. 07/17/2025

    Jim Dickson

    On part two of our series commemorating the fight for the passage of the ADA, we have on long time activist Jim Dickson. Jim talks with us about the challenges they faced in getting the ADA passed, what changes he’d still like to see, and surprises us with a fun story about a former guest and friend of the podcast.   Full transcript available at: https://www.ndrn.org/resource/ndr-jim-dickson/ Jack Rosen: You know, Michelle, we feel like this part of your life is more mysterious. What was living in St. Louis like? Okay, started that wrong. I’m trying to just get you to give us some St. Louis trivia. Mysterious was the wrong choice of word there. Michelle Bishop: Mysterious? Is it the biscuit? Jack Rosen: I wanted you to talk about the spaghetti and chili. That’s what I’m trying to get to, and I didn’t know how to get there. Michelle Bishop: I don’t know anything about that. I don’t even know what you’re referring to. I do know there’s definitely fish fries every Friday, and it’s always fried catfish with a side of spaghetti, if that’s what you’re thinking of. And we invented toasted ravioli, and most things that matter, like ice cream cones were invented at the 1904 World’s Fair in St. Louis. And there’s St. Louis-style pizza, but it doesn’t have mozzarella on it. It has Provel cheese, which is I’m pretty sure only exists in St. Louis. And pretty much everyone has some sort of connection to Nelly or Nelly’s mom. That’s about it. Jack Rosen: You know what? I was thinking of Cincinnati. Michelle Bishop: Gotcha. I gave all that, and you were thinking of something from Cincinnati. Stephanie Flynt McEben: Is Cincinnati famous for its pizza? Michelle Bishop: Is Cincinnati famous for- Stephanie Flynt McEben: For anything? No offense to any Cincinnatians. Michelle Bishop: Shout-out to Disability Rights Ohio. We love you. Stephanie Flynt McEben: Yas. Michelle Bishop: Our bad. Our bad. I was just in Cleveland. It was cool. Do you not know Midwestern cities, Jack? Can you not tell them apart? Is it all the same to you once you get past like Buffalo? Jack Rosen: Well, then there’s Los Angeles on the other side of the country. Michelle Bishop: Hi. Welcome back to National Disability Radio. I’m Michelle Bishop, one of your co-hosts and the voter access and engagement manager at NDRN. Stephanie Flynt McEben: And I’m Stephanie Flynt McEben, public policy analyst, and also one of your hosts for this wonderful podcast here at NDRN. Michelle Bishop: And then we also have a producer, who’s just a producer. Why don’t you tell them hi, our producer? Jack Rosen: Hi, Jack Rosen here, one third of the podcasting team, as you know, a host. Michelle, do you want to tell the people who we have on today? Michelle Bishop: Yes. This is a continuation of our series on the anniversary of the ADA, and allow me first to say, Go ADA. It’s your birthday. Go ADA. It’s your birthday. Okay. I’ve been wanting to get that out since the last episode for the ADA, so thank you for humoring me. So this episode, we have Jim Dickson. He has over 30 years of experience with nonpartisan voter engagement work, particularly in the disability community. He served as the co-chair of the Civic Engagement and Voting Rights Committee for the National Council on Independent Living. He is a former vice president for organizing and civic engagement at AAPD, the American Association of People with Disabilities, where he led AAPD’s Nonpartisan Disability Vote Project, a coalition of 36 national disability organizations, whose mission was to close the political participation gap for people with disabilities, focusing on nonpartisan voter registration, education and get out the vote. He actually played a central role, along with the leadership conference on Civil and Human Rights, in passing the Help America Vote Act of 2002, and he was part of the leadership team, which passed the National Voter Registration Act, which you probably call Motor Voter. He’s the past chair of the board of advisors of the United States Election Assistance Commission, and prior to joining AAPD, where he was for a long time leading this work, Jim organized the campaign to place a statue of President Roosevelt in his wheelchair at the FDR Memorial and the National Mall in Washington, DC. He has a long history of grassroots organizing with multi-issue organizations all over the country. I know definitely in Rhode Island, Connecticut and also in California, so that covers three states Jack has probably heard of. And with the support of the Sierra Club, he organized the first grassroots congressional mobilization for the environmental movement, which resulted in the passage of the first Clean Air Act. So Jim has a long history of civil rights work and grassroots organizing, but if you know him, you probably know him for his leadership with the disability vote work. That’s how I know Jim, who’s actually been a mentor of mine for a long time. Welcome him to the podcast. Jim Dickson: So Justin Dart really used his appointment to the President’s Committee on Employment of People with Disabilities to lay the groundwork for the ADA. He and Yoshiko, his wife, went around to every state, held a public meeting and prior to going, they sent out emails saying, “Sit down for a few minutes and write down all of the experiences of discrimination that you experienced.” I don’t remember whether he said in the last week or the last month. And then in every state, they held a hearing, and people stood up and said, “I experienced discrimination because I got in an elevator, and there was no braille on the buttons, and I had to go to four floors before I got to the right floor.” That was turned into a report to Congress, and that report was used for Congress to hold hearings. The hearings were fascinating, very important. This whole process, which took years, was really the first time that anything approaching the cross-disability community existed. The blind, we were off doing our stuff. The ARC was doing their stuff. There were a few organizations like Nickel and NDRN who were cross-disability and active in more than one disability silo. But the struggle to pass the ADA really eliminated those silos. And it was really interesting both first for me, because I had never thought that the lack of a braille button in an elevator was an act of discrimination. I just thought it was a pain in the ass. And many of us began, because of the way Justin and Yoshiko framed the discussion, we really began to think for the first time in terms of civil rights, is this a discriminatory structure or situation statement? And some people got that very quickly. But I think for much of the community, not the advocates, not the lobbyists, but for the rank and file, I would say it took a good year for that perception of accesses to civil rights to really be absorbed emotionally and intellectually by much of the rank and file. Simultaneous with Justin and Yoshiko’s going around the country and collecting stories and giving a report, Evan Kemp and his partner played bridge with George Bush and Barbara Bush. They were social peers, class, old aristocratic families. And Evan got, between the shuffling, would talk about discrimination that he felt and experienced. And Evan graduated fourth in his class from Harvard Law, at the time walked with crutches and did not get one single offer from a major law firm to come and go to work, totally because using crutches, he was perceived as somehow less competent. Pat Wright with CCD, Consortium for Citizens with Disabilities, formed a strategy committee. And again, there would be 20 to 30 people at every meeting representing 20 to 30 different organizations, different segments of the community. And in the initial stages, there was a lot of talk about if you weren’t blind, the fact that there wasn’t braille on the buttons or an audio announcement on the elevator never occurred to you. So there was a lot of sharing of this experience and recognition that it was discriminatory and a violation of civil rights. And I can’t emphasize enough that the concept of it being a civil rights violation was just stunning and extremely powerful prior to this whole conversation. Those of us who had jobs, careers, when we faced a barrier, our attitude was, “I got to find a workaround. I got to fix this. I got to find a way for me to operate in light of this barrier.” Very, very few of us talked or thought in terms of this barrier is a violation of my civil rights. So the most exciting thing about the process of passing the ADA was meeting with people with different disabilities, sharing our stories. And while there would be meetings in DC, led by Pat Wright and Curt Decker, the then director of NDRN, was very important in the whole process, there were meetings with members at the grassroots level, in the beginning mostly with the staff and a few places with the members. I won’t go into the lobbying strategy and the fact that the committee, the Congress, divided the bill up and had it heard in four different committees, two in the House, two in the Senate, that required a lot of fancy footwork. What was a very important strategic decisions that, in retrospect some of us regretted that we made, was a decision that we had to exempt the churches because the conversation went something like, “We’re picking a fight with business, we’re picking a fight with state and local governments, with school boards. We can’t fight everybody. Let’s not take the churches on, too.” And that was thought through, essentially agreed to. I was one of the minor voices who said, “Yeah, we should not take the churches on.” In retrospect, I’m not sure that was the right decision, but it was made. I guess I’ll move to the signing. Michelle Bishop: Before you do that, Jim, can I

    31 min

  6. 07/10/2025

    Curt Decker

    To kick off our series highlighting the fight for the passage of the Americans with Disabilities Act we have on NDRN’s founder and former Executive Director Curt Decker. Curt tells us about how the disability community came together to make sure no one was left out of the protections of the ADA and warns us about the downsides of helping getting major legislation passed in summertime in DC. Full Transcript available at: https://www.ndrn.org/resource/ndr-curt-decker/ Jack Rosen: I don’t know. I guess someone has to kick it off, right? Michelle Bishop: One of us should definitely be talking. How long have we been recording? Stephanie Flynt McEben: Like four seconds? I don’t know. It’s raining outside, y’all. It’s gross. Michelle Bishop: Are we just sitting here not recording? Jack Rosen: We’re recording. Stephanie Flynt McEben: No, we’re sitting here recording. We’re just not speaking. Michelle Bishop: Sitting here recording nothing? Jack Rosen: I guess- Michelle Bishop: We can’t put out dead air. Jack Rosen: We could. We could do a more experimental- Stephanie Flynt McEben: [inaudible 00:00:24] nothing and it’d be fine. Michelle Bishop: Experimental? Jack Rosen: Yeah, we could do a more experimental type of podcast. Maybe it’s like jazz, where podcasting is about the notes you don’t play. Is that what people say about jazz? Michelle Bishop: Is it? Just roll the opening. Welcome back to National Disability Radio. I am one of your hosts. Michelle Bishop, voter access and engagement manager at NDRN. Stephanie Flynt McEben: And I’m Stephanie Flynt McEben, public policy analyst with NDRN. Michelle Bishop: And our producer who keeps trying to sneaky call himself a host. Jack Rosen: Hi, producer and host. Really bit of everything. The workhorse of the podcast, if you will. Jack Rosen here. How are you doing folks? Michelle Bishop: Not the workhorse of the podcast. Okay. Okay, wait, so this is… We’re kicking off our ADA special? Jack Rosen: Yes. This is the first for our series of interviews with folks who were involved in fighting for passage of the ADA. And for this one, we have on an old friend. Michelle, you want to tell people who we have? Michelle Bishop: So for the very first in our series on the ADA, we actually have a good friend of the podcast, Curt Decker, who is actually the former executive director of NDRN. He actually founded the National Disability Rights Network in 1982 and led the organization for, what, 40 years? Yeah, yeah. About 40 years. Before that, Curt was actually the director of the Maryland Disability Law Center, which is the Maryland PNA. He was also the director of the Help Resource Project for Abused and Neglected Children. And was a VISTA worker prior to being a senior attorney for Baltimore Legal Aid Bureau. So Curt has deep roots in Maryland and the DMV and was our fearless leader for… Stephanie, were you here when… Did you- Stephanie Flynt McEben: I was very briefly. So I started in 2021, and then Curt retired in summer of 2022. Michelle Bishop: Okay, so every single one of us can say that Curt was once upon a time our fearless leader before Marlene Sallo took the helm of NDRN. So in addition to all that, Curt actually was instrumental in the creation and passage of the ADA and was on the White House lawn the day that it was signed. And he’s here today to tell us about that experience. Curt, did you go to Hamilton? Curt Decker: Yes. Michelle Bishop: I did not know that. Curt Decker: Oh yeah. That was so weird about my life. I grew up in Albany, went to Hamilton. I got accepted to Brown, but frankly, Hamilton gave me more money. So I went to Hamilton. Money was an issue. And then I ended up at Cornell for law school and took the New York bar, came down to Baltimore for one year as a legal aid attorney and never went back, and then… Never practiced law in New York, a total waste of time to take the New York bar and they still call me now to… Please, I’m long gone. Anyway. I did a couple things in Baltimore, got hired by Maryland Disability Law Center, [inaudible 00:03:37] it was called something else then. It was the very first iteration of the PNA system when it was only developmental disabilities. And then I helped… You know the story. I helped form the national association with a bunch of other execs around the country because there wasn’t anything. And then started going over to Washington because I was the closest guy there, maybe other than DC, and started representing at NAPAS it was called then, first as a volunteer, then as a paid consultant, then executive director. Michelle Bishop: What did you do when you were actually at the Maryland PNA? Curt Decker: I was executive director. I got hired. I was running a child abuse program for the state of Maryland. I knew people around. I got a call from one of my board members who was involved. She said [inaudible 00:04:23], “This new thing that just created by Congress called the Protection and Advocacy Systems, and it’s supposed to investigate abuse and neglect of people with disabilities, and we need someone to take it over and make it work.” And I said, “I don’t know anything about disability. I have no contact with the disability community at all. I never had a disability. I really didn’t have any relatives with it, so this is way…” And they said, “No, no, we don’t care. We need someone who can get this thing together and make it work.” The child abuse program was another federal grant. It was winding down, so I was like, “Okay, I’ll try it.” And I was lucky, it was right around when 94-142 came into existence, the Rehab Act. So I was like, “Oh, these are interesting legal issues. I never knew about this.” And then I went out to Rosewood State Hospital and the director there locked me in the room, the day room, with a bunch of adult, folks with developmental disabilities and tried to scare me, and it was like… Fortunately, I wasn’t scared. It was a great story. I walked in, these men were there, they looked around, there was a new person in the room. So they got all excited and they started coming towards me and it was like, “Ooh, this is interesting.” And I smiled and they all smiled and it was like… What’s when I realized that these… We tried to close Rosewood. We finally closed it in 20… I think it was 2010. I started in 1979, and it took 30 years to close that craphole down. So when I was there, there were 3000 people at Rosewood, and then eventually we kept pushing and pushing and pushing. So yeah. It was called MAUDD, the Maryland Advocacy Unit for the Developmentally Disabled, MAUDD. And I was executive director for three years. Michelle Bishop: I actually did not realize you started as the executive director. More than 3000 people in a single institution. Curt Decker: Oh, Willowbrook was 7,000. Michelle Bishop: What? Curt Decker: Those places are big. Michelle Bishop: I did not- Curt Decker: Very big, very big. I think Willowbrook, We always tell that story in the history of the P&As, it was the largest facility for people with intellectual disabilities in the world, I think. And a nightmare. You’ve seen that video a million times, I’m sure. Michelle Bishop: [inaudible 00:06:33], yeah. Curt Decker: Anyway. Yeah, so then I started, I spent some time… I left Maryland, but I was… Were working for NAPAS, but part-time I had other clients. I had clients in Annapolis I was representing. It’s now called AAIDD, but it was called AAMR at the time. I was working part-time, I was working on the CAP program, and I was sitting in the DC P&A office writing stuff, and we got the CAP program, and then we got the CAP grant, and then that was [inaudible 00:07:05]. They hired me full-time, and I think that’s when they hired Sally Rose and off we went. We had PAD and we had CAP, and then we got PAIMI and just kept going. Michelle Bishop: That’s funny. My mentor, when I started out independent living center in Missouri, and my mentor was one of the original disability lobbyists in Missouri, and he got into that work because he was working in independent living center, and they had a bill they wanted to get passed. They didn’t have a lobbyist then. So he was like, “I’ll go.” Went and found someone to sponsor the bill, and they were like, “We’ll take care of this.” And he went back to St. Louis and they didn’t do anything. And then of course, the bill went nowhere, and that was the one they learned the lesson that, if you’re not there- Curt Decker: That’s right. Michelle Bishop: Pushing for it, it’s not going to happen. And it sounds like the P&As were created, and then you understood that if you’re not there, somebody’s not in DC protecting what we have and building upon it, it’s not going to happen. Curt Decker: And that was exactly right, because [inaudible 00:08:07] I ran this child abuse program. I had done that for four years, and again, they were all over the country, a similar model. We’d have these meetings and I would say to people… And I helped organize an association of these child abuse programs, the same because they were federally funded. When I got to the P&A and I started talking to the other executive directors in the early days, ADD had money, and they brought us all together for a meeting. And it was like, who’s representing us in Washington? Well poor Marshawn, the ARC is the guy who’s [inaudible 00:08:44], “That doesn’t make any sense.” We had big fights. The first fight was whether we should have a national association. There were a bunch of Executive Directors, “People will tell us what to do from Washington if we have that.” Well, they were right, that’s exactly what happened over the years we kept saying. “Here’s a new program. Here’s a new program. Here’s a voting program

    47 min

  7. 06/27/2025

    We Finally Did a Sports Episode

    After three years, Jack has finally gotten Stephanie and Michelle to do an episode about sports. And not just any sport, but golf. In this episode we sit down with Josh Basile, Andrew Mitchell, and Kate Strickland to talk about AdapTee Golf, what it means to reclaim sports as a person with a disability, and how to play the ninth hole at Sligo Creek Golf Course. Learn more about AdapTee Golf at: https://adapteegolf.com/ Learn more about Determined2Heal, Josh’s foundation focused on people with spinal cord injuries at: https://www.determined2heal.org/ Full transcript of this episode available at: https://www.ndrn.org/resource/ndr-june25/   Jack Rosen: So either of you watched the US Open this weekend? Stephanie Flynt McEben: No. Michelle Bishop: I did not. Jack Rosen: Well, that is an anticlimactic way to kick off this one then. For those who are interested in golf, J.J. Spaun won. It was his first major win. He sunk the putt on the last hole to be the only person over or under par at Oakmont. So that was very cool. And our guests on this episode would be interested in that and maybe no one else. Hopefully at least two of our listeners. Michelle Bishop: Jack, you open this episode talking about a golf tournament, you know full and well me and Stephanie don’t know anything about golf. Stephanie Flynt McEben: Where’s the cricket sound? I- Jack Rosen: But I guess you guys are about to learn quite a bit about golf, specifically adaptive golf. Michelle Bishop: That’s cool. We’re going to do the intro to the whole episode where we introduce ourselves or Jack is going like hella rogue today. Stephanie, how do you feel about this? Stephanie Flynt McEben: Yeah, I’m over here like, “Wait a second. We’re not good at” … I do appreciate the confidence in us, though. Michelle Bishop: I … Yeah, [inaudible 00:01:08] the episode. Stephanie Flynt McEben: What else are you going to do? Michelle Bishop: Don’t I kick off the episodes? Stephanie Flynt McEben: But this is probably the cold open. Michelle Bishop: You miss one or two episodes that get recorded when you’re traveling or so sue me that time my car broke down and now Jack’s just in here taking over the whole operation. Stephanie Flynt McEben: Man. Michelle Bishop: Wait, is this a cold open? Stephanie Flynt McEben: I figured it … I don’t know because we know nothing about golf, so I figured that Jack was just like … I don’t know. Michelle Bishop: Why don’t we ever talk before we record an episode? We could put some level of planning into this. I mean, obviously not for this episode, it’s too late now. Well, Jack, I have to say as our pro host extraordinaire that I think this month’s episode, this topic is truly your jam more than me or Stephanie will ever comprehend. So I think you have to tell the people what this episode is about this month. Jack Rosen: I’m excited. I finally did it. I finally got us to do a sports podcast. It has been years in the making and I am so excited that we got to do it for this sport, my favorite one, golf. Today, we have on Andrew Mitchell and Josh Basile and Kate Strickland with AdapTee Golf. They are here today to talk about this innovative, exciting way of playing golf for those who are physically unable to swing a golf club. Josh and Andrew invented it, which is pretty cool, and I am so excited to have them on today. I will let them introduce themselves. Josh, do you want to kick us off? Josh Basile: Absolutely, Jack. And Michelle, it’s so great to be here today. So my journey into paralysis started out two decades ago. I was on a family vacation at the beach in Delaware and turned my back to a wave. Wave picked me up and slammed me head first against the ocean floor. As an 18-year-old, I heard a loud crack and it was my fifth cervical vertebra bursting. And since then, I’ve been paralyzed below my shoulders. I was first on a ventilator, I was able to wean off that, and then was able to go through the different hospital systems and found my way home after about three months of hospitals. And when I did return home, even before my injury, when I was … Actually, the moment after my injury when I was pulled onto the beach, I remember my dad running down to the beach, my friends got him, and he looked at me and I was like, “Dad, what about our tea time tomorrow?” It was something that I was looking forward to all summer long just to be able to play with my dad. And he’s like, “Josh, we’re not going to be able to make this one.” But when I did return home, I always just had a dream of the game of golf and being able to play again, but physically, I couldn’t. So that’s just a little bit about me. Or the other thing I would share is I started a nonprofit and went through the vocational system in my state of Maryland, and ended up going from community college to undergrad to law school, and now I’m a practicing attorney for the last 13 years. So that’s a little bit about me and I’ll throw it over to Andrew. Andrew Mitchell: Hi, Jack, Michelle, esteemed audience. Thanks for having me today. So Josh and I have been friends since I think fourth grade, and Josh beat me up on the tennis court and our lives went different directions and we reconnected with each other while we were taking a few classes at a local community college and we both connected over poker and golf. So I was on the slingshot with Josh, I don’t know, starting, what would you say, Josh, like 12 years ago maybe was the first time I ever did it with you. Josh Basile: 12, 15 years ago was when this all started up. Andrew Mitchell: Yeah, something in that range. So we stayed friends and got on the golf course maybe two or three times a year, and I was in between degrees at UMBC and Josh needed a little help with daytime caregiving. I decided to help out for just a few weeks, and then a few weeks turned into March 14th, 2020, and I was very lucky to have a job. So I just decided, “Okay, I’m going to take everything I can learn from someone who excels in his field, and I’m going to take everything I can learn about caregiving and just see what I can make of this.” And in that experience, we found that golf was one of the only things we could do that was safe during the lockdown. So we had such a good time golfing. We came across a piece of equipment that Rick Shiels had done a video on, the Swingless Golf Club, and that was the final piece of the puzzle to get us starting from the tee box with everybody else and had an incredible time putting all those pieces together. Josh’s invention, the pendulum putter, his way that he was able to put the slingshot together with all the degrees and the degrees that we use on the pendulum putter, degrees, power, et cetera. And then the Swingless Club, it was such a good experience being able to get out there and play and sharpen Josh’s skill with the game that we collectively we’re chewing on this dream of how do we bring this to the rest of the country because there was just no way that we were going to be the only ones enjoying it the way that we were. So we applied for a grant from the Craig Neilsen Foundation last year. So 2024, around April, we got the confirmation that we got the grant. I want to say was it late August last year? Josh Basile: Yeah, it was during the Adventurous weekend. We were bringing 50 families to an annual event that we do in Virginia Beach. So it was mid-August, I could tell you the date. Andrew Mitchell: Yeah. And so I got the news when Josh invited me down to just put on a clinic with the folks on the Adventurous weekend and changed my life. So here we go. This is what I do now and I’m trying to build awareness for the program. I’m taking folks out on the course. I’m hosting events with Josh, and you’ll meet our other guest on the podcast here, Kate Strickland. She’s one of our fiercest competitors in the program. And this has just been a dream. It’s a dream come true to be able to spend my life helping out the disability community, the mobility disability community, and to be able to permanently grow the game of golf. Josh Basile: So Jack, just to give you another little background of the golfing journey per se. Basically when I did return home from the hospital and being paralyzed below my shoulders, I started going back out to golf courses with my friends and family, and I would always get on the course, but I’d be a spectator. And for about five years after my injury, just I kept going back and I loved it. I loved being out there. I loved being surrounded by green grass and by trees and by the wind, by the sun, and that was just super special. But every time I left the course, I would always be frustrated because I mentally had the game to play, but I couldn’t pick up a club or grab a club and swing it like I used to. So one night, I ended up having a dream of this putting apparatus that could swing back and forth like a pendulum off of a pole and just go back and forth, back and forth. And next thing I know, that next day, I went to the hardware store, got all this PVC pipe, an old putter, and rigged together the pendulum putting device that could strike a golf ball and was able to bring it out to my local golf course and it worked. And so that said, you know what? I could get the ball in the hole. How do I get the ball to the green? And at that time, tested a bunch of things out. We found that the easiest way to advance a golf ball was a slingshot where you could have somebody put the ball in the pocket and basically I’d be behind a caregiver or a family member or friend who would be operating it and I could direct them pulling it back. And depending on the power you pull it back or the angle of the slingshot in the air, you can basically drop it wherever you want on a golf course, anywhere from five yards to sometimes over 150 yards depending on the

    47 min

  8. 05/29/2025

    Spilling the Tea on All Things

    Congress? The budget? What’s the whole deal there? You asked, we brought someone on who answered! NDRN’s Deputy Executive Director for Public Policy Eric Buehlmann came on the podcast to explain what’s going on with the budget and how it impacts the funding NDRN and the Protection and Advocacy network receives. Full Transcript Available at: https://www.ndrn.org/resource/ndr-may25/ Tell Congress to Protect our Programs: https://secure.everyaction.com/I6avR5LSvUamWdNZNIgMew2   Jack Rosen: And Michelle, do you want to kick us off? Michelle Bishop: Are we recording? I’m totally sending a text message. Okay. Okay, I’m ready. Stephanie Flynt McEben: Well, now we have our whole… Blah. Now we have our cold open. Michelle Bishop: Of course we do work on these. We somehow put out an episode every month. Okay. Wait, wait, wait. Are we doing the opening for the whole episode or are we just getting our conversation with Eric started? Stephanie Flynt McEben: I thought we were doing the conversation with… Wait, I don’t care. Jack Rosen: I guess just with Eric. If we have time at the end, we’ll do an open and close, but here, I think I can- Michelle Bishop: I know, but I don’t know how to frame what this conversation is. It might be- Stephanie Flynt McEben: Like spilling the tea on all things. I don’t know. Jack Rosen: That will be the podcast title, but- Stephanie Flynt McEben: I love that. Michelle Bishop: Thank you. Jack Rosen: Just ask me who our guest is today and I think I can take it from there. Michelle Bishop: Okay, deal. *Intro Music Plays* Jack, tell the people who our guest is this month. Jack Rosen: So today, we have on Eric Buehlmann, NDRN’s director of public policy and Stephanie’s boss. He is here today to… Folks have a lot of questions about what’s going on with our funding. We’ve seen a lot in the news about proposed cuts to various programs that the P&A network supports, and folks within and throughout the network have a lot of questions about what’s going on right now. So we’re bringing in Eric Buehlmann, NDRN’s director of public policy, congressional insider, and expert on all things budgetary. Stephanie Flynt McEben: And fierce leader of the public policy duo here at NDRN, so yeah, Eric, if you want to spill some tea. Eric Buehlmann: Thanks for inviting me on today. So I feel overwhelmed by the introduction in terms of being a congressional expert on the budget, but it is a very confusing and hidden process in a lot of respects, but also very scary because as you all well know, our members, the protection and advocacy and client assistance programs depend on the federal funding to provide the great advocacy work they’re doing. I guess from the beginning, the president is supposed to propose a budget, and we haven’t really seen a full budget yet proposed. We have seen some things leaked which were very devastating to our network in terms of getting rid of what I call the mothership program or defunding the mothership program, the Protection and Advocacy for Developmental and Disabilities program, but also in the same breath, the voting program, and then also severely curtailing the mental illness program, PAMI. So that leaked budget was very scary, but is also one of those steps that most people don’t ever see. It usually takes place the year before, so in this case, this would have taken place in 2024. That kind of discussion between the Office of Management and Budget and the agency, Health and Human Services would have taken place. But because we have a new president that came in, those discussions were taking place earlier in 2025, but that’s also just one step. So the agency does get to push back on any proposal that they get from the Office of Management of Budget, and our understanding is that there was some pushback. We don’t know exactly what that pushback is, but that could mean that there aren’t defunding those programs. It could mean reductions in the amounts of cuts that existed. It could mean anything. Most recently, the president released what’s called a skinny budget, and that is usually what happens when a new administration, a new president comes in, because they haven’t been working on it for the last eight, 10 months. It’s hard to produce a 1,200-page document, 1,200 pages plus that the president’s budget usually is, so you get what’s called a skinny budget, which just has top line numbers. You can see the problems that may exist in those top line numbers with huge reductions in what they released in what’s called discretionary funding. That’s what’s done by Congress, and especially the non-defense side, which is where all our funding is. But you can see by just the sheer fact of a 23% reduction, which is just a massive reduction in that kind of funding, that that probably has a negative impact on our programs, but it doesn’t get down to the detail of those kinds of levels in terms of being able to know what the impact is on every single program. So we know this giant bad number out there, but we don’t know what that specifically means for our individual programs. We may later this summer. They may release a full budget. They don’t have to, but they may release a full budget at that point and then we’ll know what these implications mean, but again, that’s just another step in the process. Then comes the work of getting Congress to pass the appropriations bills, and that’s their job. They’re supposed to fund these programs and make the decisions. Ultimately, it’s not the president that makes those decisions. It’s Congress that has that authority to decide what the appropriations are going to be, and that’s where our work needs to be, is making sure that Congress understands the importance of all of our programs and that they’re out there and that they do wonderful work and that they need to be funded, not only just funded at the same level. They need to actually have increased funding so that we can do more and more work that we really need to do and that we know is out there. And so that’s really where our focus is right now, is making sure that Congress gets the important work of our members and our work and the work you guys are doing. And so therefore, we’re making the case to Congress and then hopefully over the next couple of months as Congress begins to consider these bills and decides what their funding priorities are going to be, that they may be. I would be surprised. I think right now, we go for level funding is a great win given what we’ve seen out there for numbers and that hopefully we can maybe get an increase here or there, but that’s where our focus is right now, is making sure that Congress understands and that over the next couple of months, that they will fund our programs. I will stop talking for a second. Michelle Bishop: Eric, I heard you mention PAD program and PAMI program. Did you mention that Pavo was also zero allocation in that budget? Eric Buehlmann: I thought I did. Michelle Bishop: I hope so. I was going to say, “Eric, I’m right here.” Stephanie Flynt McEben: Yes. Michelle Bishop: I’m right here. Eric Buehlmann: I said the voting program. Michelle Bishop: Oh, okay. You did say, yeah. I just missed it. I was getting ready to come out swinging, guys, because- Jack Rosen: No, he did. He also acknowledged that they’re trying to zero out the program that funds all the work our PAVA folks do, including- Michelle Bishop: Okay. My bad. My bad. Sorry, Eric. We’ve been friends too long for this to be the rift between us. I did also have a legitimate question. I know there’s been a lot of talk in the last couple of months about federal grants and contracts. We’ve seen attempts to freeze all of the grants. We are hearing that contracts have gotten canceled. Can you give, for people who don’t live in this world all the time, a breakdown of what is the difference between a federal grant and a federal contract, and what does it actually take to alter them or eliminate them? Eric Buehlmann: You’ve raised another important issue, which is a lot of our members are still waiting for their ’25 funding, and hopefully that’s going to happen over the next couple of weeks. Even though Congress finished out what is the current fiscal year, fiscal year 2025 back in March, they haven’t released all the funding, so our members have been suffering through trying to keep doing their work and tapping their reserves and things like that. And hopefully, that funding’s going to be released in the next couple of weeks so that you know how much money you’re going to be getting. That will run through September 30th and you can continue doing the work you’re doing. Really, the difference between grants and contracts comes down to, in my mind, whether this is something that is required. Required is a tough word because that to me usually means an entitlement, but our funding is what’s considered to be a formula grant, and you get the amount of money, you run the formulas and then people get a certain amount of money. So you’re required to send that money out under the formula, and that’s usually a grant. If the federal government’s trying to get something like some research or I use widgets or $60 million airplanes that will drop into the Red Sea, then those are usually contracts, and so that is just something not required by the law to go do, but that they seek the services from someone else to do those kinds of activities. So our members get grants because it’s just a formula, but if you’re doing research for the federal government or, as I said, producing widgets, then you’ll get a contract from the federal government. And I think the contracts at times can be a little tougher to cancel because there’s usually terms and conditions in them, but they’re going about doing it, and y

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About

An insightful podcast by the National Disability Rights Network offering advocacy tools, heartfelt storytelling, and real-world policy insights—accessible whether you’re an advocate in the field or just someone who cares deeply about disability rights.

Information

  • Creator
    National Disability Rights Network
  • Years Active
    2020 - 2026
  • Episodes
    47
  • Rating
    Explicit
  • Copyright
    © 2020 National Disability Rights Network
  • Show Website
    National Disability Radio