2025, Maria Town, Jennifer Mathis, Christine Griffin

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 this show are solely those of the host, guest, and callers. Now the host of Disability Matters, here's Joyce Bender.

Hi everyone, happy new year! I hope you had a great holiday. Um, I'm Joyce Bender with Disability Matters, and I love this show. Do you know this is one of my favorite shows of the year? The year-end show where I bring these dynamic, powerful disability rights leaders to share their view, you know, of what could have been better, what, what do they hope they see in the future, um, and I couldn't have better representation than Maria Town, the CEO of AAPD, and Jennifer Mathis from Baseline, better known to the world as Mathis on the Mic. So if you're listening to show, you get, wait, I recognize that voice. Who is that? That's because it's my half on the half hour news reporter Jennifer Mathis. Both of you, welcome to the show.

Thanks so much, Joyce. Happy to be here.

Um, well, you know, I thought about this, and I do want to talk about, of course, both of you and your views and your background, but I would be remiss if I did not start by talking about Bob Kafka. Which such a tremendous loss, uh, to the disability rights community. I mean, he was only 79, the day after Christmas. I mean, I was so shocked. Um, and by the way, everyone, and I'm gonna have Maria at AAPD and Basilone send this out, but I'm gonna do a replay next month of one of the shows with Bob, just so in memory of him, and so everyone can hear him, uh, again. But I assume, Maria, that you knew Bob.

I did. I knew Bob well, and I assume that Jennifer knew him very well. Um, Bob— so, you know, Bob went from being, uh, a kind of icon to me to a real person. Um, truly when I started AAPD because Bob created Rev Up, which AAPD's big voting campaign. And for all the listeners out there, I'm actually in Austin right now. I came here to celebrate my anniversary and I was hoping to see Bob. And so it feels really bittersweet to be here right now. I got here basically, you know, the day after I learned that he died. But anyway, Bob really believed in the power of disabled people, and he deeply believed that disabled people deserved dignity and choice and freedom. And, you know, I will let Jennifer talk about his incredible work around deinstitutionalization and community integration, but when it comes to voting, Bob recognized that disabled people were a powerful voting bloc, and he recognized that voting was an essential organizing tool. You know, Bob wanted to win campaigns around issues for sure, but I think, like, at his core, he wanted disabled people to be organized and to be this powerful political force, and voting is an individual act that connects people to broader systemic movements. And so he created Rev Up and Rev Up Texas, and then he asked AAPD almost 10 years ago now to take the movement national, and we did, and we have. And so now there's a Rev Up coalition, a formal Rev Up coalition in 20 states, and we have a presence in 48 states. And I have to tell you, I'm really sad that, you know, Bob did not live to see it become a presence in 50 states, but I'm— I bet we'll get there next year. And, you know, he was an incredible friend, an incredible collaborator. And I also, because we're on the radio, he had a radio show himself, Barrier Free Futures, and was really, like, really incredible about getting guests on, about supporting new voices in our movement. And I also want to acknowledge, as painful as Bob's death is, he was 79, and a lot of people in the disability community do not get to live that long. And so I'm just reflecting on the fact that we, we really got the privilege and honor of Bob's knowledge and, and power for as long as we did, because most, most people don't get to live as long as he did.

So, which is so sad to hear. I mean, when you think about the disparity with healthcare and how that's part of the reason. Maria, just a little history for people that don't know who he is, would you mind giving a little history about what, who he was and ADAPT and, you know, all of that?

Sure. And I'm sorry, I should have, I should have started that way. So Bob Kafka was a disability organizer and he was a Vietnam vet who, you know, after he came home got a spinal cord injury. Um, he was originally from New York, but he wound up moving to Texas. He, um, like me, got part of his start in Houston. He ran the University of Houston Disability Services office for a while, and then ultimately he moved to Austin. And, um, which—

so ironic that that's where you are.

Yeah, I know.

Yeah.

Um, so Bob, um, actually interned with a group that's still around that people should know about, the Coalition of Texans with Disabilities, and that's where he met his incredible wife, Stephanie Thomas, who is a phenomenal organizer and powerhouse in her own right. And together, Bob and Stephanie did what they like to call pitchfork advocacy and organizing. And Bob did his first ADAPT training more than 40 years ago in 1984. Where he learned about Direct Action for Disabled People, and he began to protest for accessible public transit, which we did not have in the United States. And if you see, you know, photos of people, particularly in wheelchairs, kind of sit— sitting themselves in front of buses, risking their bodies to get accessible public transit, Bob was one of those folks. and that commitment to direct action and organizing Bob deployed across many issues after he won public transit, including community integration for disabled people on a number of different fronts. Um, so he was a seminal figure within ADAPT, which originally stood for Americans with Disabilities for Accessible Public Transit, and the name has since changed a couple of times, but ADAPT is the kind of direct action arm of the disability rights movement. And he has since been associated with many, many different efforts and organizations, including REV UP and AAPD, which we are honored to have that association.

Mm-hmm. Yeah, he was truly just an incredible force. As a matter of fact, When I first began in my career at Bender, oh my God, it was like ADAPT was like, look out, ADAPT's going to come after you. And people actually had fear. Oh, here they come. They turned themselves at the White House. But they did a lot of great things.

He was extremely effective.

Yes. Yeah. And Jennifer, I know you knew him for a long time. How about if you share a little bit about your relationship with him and Basilone and some of the things you worked together on.

Sure. So as Maria said, Bob did a lot. I mean, I think it was, you know, certainly his core issue or one of his couple of core issues. I mean, I think Bob was involved, I would say, in every most fundamental issue there is in the disability world. So, I mean, certainly starting out with public transportation, being able to get around, and then, you know, moving on to community integration, and then moving on to voting, which, you know, is integral to safeguarding every other right there is. And so I worked with him certainly over the years on community integration issues, and one of the things that has gotten a lot of attention in the press is Bob's role in helping to get the Money Follows the Person program passed. And that was really, I think, an illustration of how savvy Bob was, of how he, you know, he was a very powerful advocate and leader using direct action really to, you know, you know, a very effective way to accomplish things. Um, and that, that whole interaction that he had with CMS, the Centers for Medicare and Medicaid Services, leading to legislation and administrative work to, uh, administrative agency work to, um, create the Money Follows the Person program really began with Bob and others being outside of the White House and demanding to be heard. And Mark McClellan, who was a Bush aide, President Bush II aide, coming out and talking to him and Bob engaging and really kind of making clear, you know, what people wanted and what was wrong with the Medicaid program as it stood and how it really really kind of this institutional bias where nursing home services are a mandatory service. And so every state had to cover nursing homes, and they didn't always cover community services, and they had lots more flexibility. And so hence tended to impose a lot more restrictions on the coverage of community services. And Bob was really quite effective in you know, all kinds of advocacy in doing direct action, but also in talking to bureaucrats and really being a Medicaid policy wonk and being able to get into the weeds with people in the administration to, you know, result in that program, which basically enabled states to get federal Medicaid reimbursement for for moving people, helping people transition from institutional settings into the community. But I remember engaging with Bob way before then too, when Olmstead was in the Supreme Court originally, you know, in 1999. Well, it was 1998, I guess, when it was, it was being heard by the Supreme Court. Or I think maybe, yeah, it was either 1998 or 1999. It was decided in '99. I think it was '98 when the argument happened. But in any event, Bob really played an instrumental role in shifting the balance of where the states were coming down, which made a difference to the Supreme Court because when Olmsted When the cert petition, the request to the Supreme Court to hear this case, was filed originally by Georgia, there was a brief supporting that cert petition from something like 22 states saying the sky is falling, you can't let this ruling stand by the 11th Circuit, which had supported Lois Curtis and Elaine Wilson and interpreted the ADA to prohibit unnecessary institutionalization. And all of these states said the world is going to come to an end if that, if that stands, because we can't, we can't be hostage to these people with disabilities and the ADA, and we have to be able to administer our service systems as we please. And, you know, we just can't do that. And it was really shocking to see that many states take that kind of position. And so there was a very concerted effort during the time that the briefing was happening to talk to governors and state attorneys general to get them to pull themselves off of that brief. And they did. They filed things with the Supreme Court saying we just claim that, please, we no longer sign on to that brief. And a lot of them then ultimately signed on at the merits stage of the case to a brief supporting the plaintiffs, supporting Lois and Elaine, and saying, we agree, and in fact, we have been moving in this direction, and we have— this is the right thing to do, and this is where service systems are going, is, you know, towards community services, and it's cheaper to do community services, and it's better for And so, you know, we support that. And that was a very significant shift. And that was really, I thought, the most effective collaboration that I saw between lawyers and non-legal advocates and direct action activists. And Bob really understood the power of that. And Bob could work with anyone, really. I mean, Bob was able to, He communicated with the lawyers, he communicated with everybody, you know, who in that ecosystem who was doing this advocacy. And it was so effective, you know, when you had people who state by state coalitions were built and they were meeting with governors, meeting with attorneys general, explaining why this was so important to the disability community. And then you had also people chaining themselves to the state capitals when necessary and when they weren't getting heard. And stuff saying, "This is important to us." And so it was just really one of these efforts where everything mattered, everything together worked all as a whole. And it was critically important what the lawyers were doing. It was critically important what the advocates were doing, but it was critically important what the direct action folks were doing too, what ADAPT was doing. And Bob was really, the one that I think made all that happen on the direct action and grassroots advocacy end. And he and Steve Gold, who was essentially the lawyer for ADAPT for a long time, you know, were very, very good at coordinating amongst everybody. And I was so impressed by Bob and his ability to get things done. And I feel like it's interesting to see all the the coverage of Money Follows the Person and stuff. But I keep thinking, yes, it started so much earlier than that too. And it really was amazing to see what he could do and continue to do over all the years. And even with his radio show, always bringing on new people and bringing on people to talk about what was important and always asking really great questions and making sure that all the information got out there in a timely way, like you, Joyce.

Well, you know, my first question: now what? Now, now what? You know, I see that just earlier this year, or no, or a year ago, he was already out protesting about Medicaid. Yeah, I was reading this article about it. And, oh my goodness, I mean, think about Medicaid. And by the way, when you were talking about institutionalization, you know what, what I'm surprised that the nursing lobbyist, the nursing home lobbyist, were not able to stop this. Because what's going to happen to nursing homes when they get a lot of their money from Medicaid? Do you know what I mean?

Well, so it's, it's really interesting, and there's, there's been some coverage around exactly what you're saying, Joyce, because it's, it's not just nursing homes. Hospitals, right? Hospitals especially stand to lose so much. And when we think about hospitals Um, we cannot just think about them as places where healthcare services are administered. Hospitals are often the largest employer in a town, in a city, in a region. And so oftentimes hospitals have a lot of lobbying power, um, even with legislators who like really don't care about healthcare because They are a place where there are a lot of jobs. And so it was really interesting to me to see that the hospital lobby associations lost. One reason for that is they were not all unified. There were some associations for rural hospitals that, you know, told legislators, "We'll be okay," and I'm going to say that that's just not true. You know, I'm from Louisiana originally, which has one of the highest rates of Medicaid usage per capita, even, and all of the major hospitals in the state sent letters to our congressional delegation basically saying, like, don't Don't sign this bill, don't cut Medicaid. And, um, and I, I think it is indicative of just how different the, um, the sort of playing field is right now. Um, because the, you know, what Jennifer is describing, like how effective Bob was in advancing, um, you know, kind of stuff around the Olmstead decision and money follows the person. A lot of that is happening in the disability community right now across a number of issues, and it is not— we're not able to be as effective as we were because of how politics has changed. And I'm trying not to be like too partisan here. But Bob was able to build relationships with people and folks would listen. And if you think Senator Harkin issued a very nice remembrance of Bob, and he will tell stories about how Bob would call him and say, "Senator, we're going to do X, Y, and Z. This is to help you pass this bill. You need to be aware." And the direct action moments were moments where relationships were fortified, not where they fell apart. And today, that is not happening, and it's not because people aren't trying to build relationships. It's because there's not really an interest in having those relationships by a lot of the powers that be. What do you think, Jennifer?

I think the same thing. I had the same reaction as you. It is hard to explain you know, the reasons that this effort lost, because there were a lot of powerful interests arrayed against the Medicaid changes that happened. And as Maria said, I think the hospitals were really the most powerful of those interests. And so I think it just— the only way that is explained is the completely different context that we are in. And the train that was moving and was really— no one could stop it, it seemed. And so we are in a very different environment, which is not to say that we can't stop anything. We do have power and we will continue to exercise it, but some things are just, um, just a much, much different and much harder battle than they would have been at any other time.

And I, I, I, excuse me, I just want to say Maria Town is the CEO of the American Association of People with Disabilities and a real powerhouse. I mean, I'm honored to say that I'm a friend of Maria, but Maria is brilliant. And I just want to say, Maria, you're gonna— you're the person now Yeah, you are. You are the person because the whole disability community has to have someone that's like a guiding light for them. So you are in a very powerful position with millions of people that look up to you. I want to— I'm putting the pressure on you, Maria. But Maria, I'm serious when I say that. You are the person now. I think everyone would be, you know, in the disability community would be in agreement with that because AAPD is across the board. You know, it's not in one area. And Jennifer is senior everything at Bazelon, working— Bazelon works in the legal area. What is your exact title?

Deputy director.

Deputy director. And she is brilliant. And she— Chris Griffin told me a long time ago, do you know Jennifer Mathis? Oh my God, she's so smart. And she really is. But so she's with Basilon. I'm honored to be friends with her and to be on the board of both. I just want all of you listeners to know these are very powerful disability rights leaders. And isn't it so great they're both female, you know? Uh, but Jennifer, I want to say, is— oh, more important, she's Mathis on the Mic. That's the most important thing. Jennifer on the half hour, uh, gives us a news break for the disability community. You have no idea how many people have compliment me, Jennifer, about you, but I want to say we are the only place that every week you can go and hear up-to-date news of what's happening in the disability community by someone with great credibility that really knows. So I just want everyone to know who, who both of them are. They are— and now that I've said that, we were going to talk about things that we weren't happy with, things we wanted to see, but I'm sure one of those things is Medicaid. And you know, when you were saying about being partisan, whether you're Republican or Democrat, you will be impacted by Medicaid being cut. It doesn't matter what your party is. You could have a child that is impacted. You could have sister, brother, but you will be impacted because that is a great point I never thought of, Maria, when you said it's connected to jobs. Because, yeah, Highmark is the fourth largest now insurance company. UPMC is gigantic also. So, you know, what's going to happen? Because Medicaid— go to the hospital emergency room, they are, you know, have to help by law. They have to help you. But no reimbursement. So what is it? And as Maria said, these rural hospitals, ah, you know, destitute. So, uh, Jennifer, what do you think? What do you think is going to happen? Do you think there is any room for change? Uh, because this is really, really, really, really terrible. Well, right.

I think that I mean, there's a lot of problematic things that have happened in the past year as it relates to people with disabilities, and we can talk about some of those. I think of all of those things, probably the worst one, the most damaging one, is what has happened through the so-called One Big Beautiful Bill Act to the Medicaid program. And it is almost inconceivable that Congress could pass something like that. It was very clear that there was a lot of pressure put on a lot of people in Congress to do that. And I mean, it is really hard to really anticipate exactly what will happen because the damage is so great that it's hard to get your mind around it, but also You know, there are some things that states can do to try to avert a lot of that damage, and we are going to have to see what happens, and we all are going to kind of have to fight to ensure that states take steps to avert a lot of that damage. So right now we are anticipating, based on the Congressional Budget Office's estimates, that 5 million people alone are going to lose Medicaid coverage just based on the work requirements that Congress imposed. And that's essentially people in the Medicaid expansion program will have to either work or engage in certain activities, educational activities, community service for 80 hours a month. And to demonstrate— this is really the part of it that is the biggest problem— is like demonstrating proof that they are doing this or that they are exempt from the work requirements. And that is where, you know, everyone expects many people to get tripped up by all of the bureaucracy and navigating this very complex process. You can imagine people without internet access or without access to a computer calling on the phone and not being able to get people and calling and calling and calling and not being able to have a conversation that makes sense with somebody to understand what it is that they need to do and when they need to do it and what it needs to look like. And so, you know, there are millions of people who are expected to lose coverage that way. And then on top of that, millions more are expected to lose coverage for other reasons, including just the more frequent eligibility redeterminations now that are supposed to happen every 6 months. And so people have to keep proving and proving and proving and proving. And, you know, the purpose of that seems to be to just let people drop off the rolls. That seems to be very deliberate. And so, you know, what we are all engaged in now is an effort to try to get states to, number one, understand that it's not in their interest to let all these people drop off the Medicaid rolls or to deny people who are eligible for Medicaid because of these proof issues. And so, you know, there are many advocacy efforts happening. Now, to get states to put systems in place to, for example, have navigators, have people available to help people, especially when somebody needs help due to a disability, to navigate that process, to figure out what they need to do, and to really give hands-on help to help people do that. And there are many options that states can take, like letting people self-attest to, you know, they have a disability that makes them exempt from the work requirements, et cetera, rather than requiring them to provide specific types of documentation to prove that. So there are things that states can do. You know, we put out a guide that talks about how federal disability rights laws in fact require states to have many of those systems in place, that the ADA and Section 504 actually require states to ensure that their Medicaid programs provide reasonable accommodations to people with disabilities, to ensure that they have equal opportunity in Medicaid programs. And so our position is many of those things are actually required by states, by the federal disability laws. So, You know, we are going to have to do a lot of that advocacy. And my hope is that most states will see, will begin to understand that whatever their ideologies may be, that it's not in their interest to lose all that federal funding. And that people, even if people fall off the rolls and aren't getting services, that's not going to be costless to states. And they are going to end up paying for people people in many ways, in, in shelters, in emergency rooms, in hospitals, etc. And so it isn't actually a benefit to them to, to drop people from their roles and, and lose huge amounts of federal reimbursement for those people's services.

Maria, how about you? What do you think about all this?

Well, so Joyce, your question was, do I think that there's an opportunity to change this? And absolutely, yes, I do. You know, the way that the One Big Beautiful Bill Act was designed was that a lot of these harms technically aren't in place until after the 2026 midterm elections. And so Congress can still choose to do the right thing and stop the changes that were made via the One Big Beautiful Bill Act. I think the chances of that actually happening are slim, but I want to be explicit that they could still do it. And in advocacy, it's not done till it's done, and this isn't done yet at all. And I think about, you know, something that Jennifer and I worked closely on many years ago, or a few years ago, which was this case at the Supreme Court that involved CVS. You know, we got CVS to pull their petition to the court like the day before. I think, you know, it was really kind of down to the wire. And so I think that there are many disability advocates out there who are going to do whatever we can to try to get Congress to do the right thing. To Jennifer's point, I also think in addition to like states designing their systems to guard against harms, there are things that individuals and families can do right now to get prepared. Jennifer mentioned the issues around documentation. And Joyce, I don't know if you kind of know my Medicaid story. I don't know, Jennifer, I don't know if you've heard it. Now let's hear it.

What? Yeah, I said please share it.

So I, for listeners, I have cerebral palsy. That is a developmental disability that I've had since I was born. And I, um, I got a Medicaid waiver, um, when I was very, very little that allowed me to get, uh, in-home support, that allowed my mom to get respite services as she was raising 3 disabled children and putting herself through school. Um, and that, that waiver, I mean, it really It, it changed my life for the better in so many ways. If you are somebody with a disability, particularly who was disabled as a kid, you probably had the experience of having lots and lots of surgeries. So we had people, you know, who would come to my house and help take care of me while I was recovering from major surgeries, right? It really, like, if we hadn't had these services, I probably would not be here today. Um, but in the mid-'90s, and I, I think this is an important point, what we're seeing happening today around Medicaid did not start this year. It has been the goal of many people for a long time. Um, and in the '90s, Louisiana decided to change the way its Medicaid system worked, and they established rules around things like redetermination. And so I had to go get assessed again to see if I still needed all of these services, even though my disability was still there, it hadn't changed, and it would always be there. So I, I go, and I remember this because I was 10 years old, so I go at and get this, uh, this assessment with this man who I'd never seen in my life. It was somebody who had never been engaged in my care or in my support. And ultimately he determined that I was too smart to need these services. So I lost all of my in-home support.

Oh my God.

All of my physical therapy because my mom was still a student. Right? Like, we didn't have health insurance that would cover all this stuff for me. Um, and so we fought it. This is also one of my first advocacy memories. We fought the decision and we lost.

Oh my gosh.

Yeah. So like, I went through this 30 years ago.

Uh, or— well, then what, what did— what happened then? What did you do?

I, I mean, everything was gone, you know. We, we figured it out and, you know, thankfully after my mom graduated, she got a job, but instead of getting PT in my house, we had to go somewhere for me to get PT, right? And I think that's one of the other things that people are concerned about is Medicaid, being able to deliver Medicaid services in schools, for example, especially because of the concurrent attacks on the Department of Education and when, when families, when people have to spend so much time traveling here, there, and everywhere to get services instead of those services being delivered in a place like their home or their school, that takes away people's time and it takes away their ability to engage in other activities that either improve their quality of life or that they just need to do. But anyway, families, the whole point of my story is like, get your documentation together. Especially if you were diagnosed many years ago and don't have like a current diagnosis. The, the issue with what I'm saying is that costs money and that costs time, but if you can do it, do it now. Do it sooner rather than later so that when those redeterminations start happening, you have paperwork in order. Like Jennifer was saying, people are going to lose Medicaid services not because they're ineligible, but simply because they don't have the documentation to prove that they are eligible for these services, and nobody's going to work with them to get their documentation together. And so individuals can be doing that, um, and while, while we have the time to do it, because it's going to take a ton of time to put all this paperwork together. And I think another point—

Oh, that is— what a story though, that is.

Oh, yeah. Oh, it wasn't a story I told for very long, and then I had to start doing Medicaid advocacy, and I was like, wait a minute.

Yeah. But it's good for— again, I want you to continue. You had another point. I just want to say again, though, this does not matter. Republican, Democrat, you're going to be impacted. Someone in your family, and if not them, a job. You know, we have hospitals, I know that in rural areas that are planning on shutting down. So just as Maria said, what happens to the people that have jobs there? Some are Republican, some are Democrat, they're going to all be impacted. And Maria, when you said we're not giving up and we should never give up, ever, the power of the vote, Maria. The power of the vote at that midterm could be one of those things that has an impact. What do you say about that? You had something else you were going to say.

Yes. And I, you know, thinking about Bob and one of the issues that we had to deal with during the fight around the One Big Beautiful Bill Act was organizations like AAPD were telling the community disabled people will be harmed by these changes. Disabled people— exemptions around disability are not enough to protect disabled people. And many elected officials, not all, would do town halls where people with disabilities would ask about the impacts of the One Big Beautiful Bill Act on disabled people, and the elected officials would say, people with disabilities are going to be exempt, you're fine, don't worry about it. And we would get feedback saying, my elected official said that disabled people aren't gonna be harmed by this, so we're good, we're exempt. And Bob would not have taken that answer at face value. He would have pushed people to say more, right? Give me the specifics. How are you going to protect disabled people? How is this exemption going to work? What is the regulation going to look like? How are you going to work with CMS to ensure that Congress's intent is matched by the executive branch? He would have kept pushing, um, and he would have had the relationships with the elected officials and with the regulators to keep pushing. And so when we think about the midterms and, you know, how people want to assess candidates' stances, we can't take answers for face value, at their face value. We have to really interrogate what responses candidates seeking public office are providing to see if they truly understand the problems that their constituents face, whether it is around Medicaid and healthcare or transit or accessible housing or employment. And it— I, I think one of the other things is a lot of the staffers that are working on these issues also don't know a lot about Medicaid or key programs that disabled people rely on. And so we have to do education not just with people seeking public office, but also their teams who are ultimately going to be the ones working to execute their visions.

Yeah, Jennifer. What do you think about, you know, we always on the show talk about how you can make a change. I do have one question first. That document you talked about that Bazelon has, if someone is listening that works in a state office, how do they get that? Can they get that document?

They can. They can go to our website, which is www.bazelon.org, which is B-A-Z-E-L-O-N dot org, and it is still on the home page. You can find it. You may have to scroll just a little bit, but it's a publication together with the Corporation for Supportive Housing, and it is— trying to see if I can pull up the name quickly, but It is basically about how federal disability rights laws apply to state Medicaid programs and preserving Medicaid after the changes that were recently wrought by Congress. And I'm going to tell you in a minute or two what the name of that publication is as soon as I can find it.

Yeah, while you're checking that out, what I was meaning is we have a midterm. There isn't a congressman or woman that wants to lose that seat. And you know, if that power, that powerful role in this country, if you're— so you have to— we have to get this news out to the disability community and then disability community, to their family, you've got to vote. You've got to vote. You've got to make your voice heard at these town hall meetings even before the election. Jennifer, what do you think about that?

No, absolutely. I think that this is one of those circumstances that demonstrates just how important voting is. Why it matters so much for every aspect of life, but I think particularly for people with disabilities, given how critically important the Medicaid program is for people with disabilities, how it's not just about medical services, it's about all the services that really enable people to live day to day, the That needs to be front and center in how people vote, and they need to hold their representatives and their senators accountable. And I think that is very much something that, you know, it matters, and people in Congress are now feeling that pressure. They voted as they did on that legislation, but I think they're starting to understand the ramifications. And it's important that people not forget, you know, because of the time difference between when that bill passed and the react— the immediate reaction to it— and when the election happens. People need to make sure that their elected representatives feel the consequences of that vote.

Yeah, boy, that Justin Dart vote is if your life depends upon it, because it does— wow, talk about it being, you know, right, right on target here, sadly. Uh, well, Maria, how about for 2026? In addition to seeing this Medicaid, uh, change What else do you hope to see?

Ooh, I hope to see— I'm trying to figure out how to put this in words. I hope to see people, and by people I mean a lot of our policymakers, realizing the importance of good government. And that is a wild thing to say. Um, but over the past year, we have seen, um, many, many efforts to dismantle the federal government and key programs that disabled people rely on. Um, you know, not, not only Medicaid, but things like programs that provide early identification and intervention for kids with disabilities. Um, We've seen many of the programs that promote the hiring of disabled people in the federal government completely obliterated. And I hope— I want people to realize these programs are actually essential. We need them. And while harm has been done, there's an opportunity to rectify it. I want to see disabled people Over the past year, I really think that the disability community has come together in ways that I haven't seen very many times. You know, we thinking about what's happened in the autism space this year and the ways that we've seen autism attacked. Autism groups are working together in, in really important ways right now, and usually these groups are not, uh, cordial with one another, you know, they, uh, but they've right, right now are a really united front in saying, you know, vaccines don't cause autism and autistic people deserve dignity. And so I hope that we can see more of that across the community. Um, and I, to your point, Joyce, in the midterms, we've got Senate races, House races, but also many, many, many, many, many local and state races, and every race is important. Every election will have consequences for disabled people, whether it is the, you know, for at the county level or at the federal level. And I want to see disabled people voting in record numbers in every election possible. And now I'll pass it to Jennifer.

Yep.

I think that's right. I think it's hard. There are so many things that I think came out of federal agencies this year and also out of the White House, OMB, that have directly targeted people with disabilities in ways that we would not have anticipated. And that has been, I think that's been really unprecedented. And disability has always been a bipartisan issue, disability rights. And so, you know, it really was such an unusual time, such a different time than we've ever experienced before. And I do think I have some optimism that out of darkness can come light, and that sometimes, you know, if things are bad enough, that helps. I mean, that really has been interesting to see the degree of alignment across communities. Maria talked about in the autism world, and the same is true in the mental health world, where people often have quite different priorities and quite different perspectives on many things. Things. And it was interesting to see the degree of unanimity in pushing back against many of these things. So I would like to see that continue and to have what comes out of all of this be kind of a new power, a new alignment, a new power, a new remembrance. I think some of the groups sometimes I think are seeing that where they have gone is maybe too far in certain directions, in taking away rights and not caring enough about rights and not being assertive enough. And so groups that sometimes historically were not as protective or not as concerned about the rights of people with disabilities, we have seen step forward in new ways. And so that gives me hope that I can gives me optimism that we are at a place because of how far things have gone where we can exercise power in the vote, in our advocacy in a way that we haven't in a long time.

And you know, when people called me even in January, oh my God, what are we going to do? I said two things. We got to keep moving forward. But number 2, communicate. You could be in Arkansas, Rhode Island, anywhere, and something happens and you think AAPD needs to know, and you get in touch with Maria Town. Or there can be something in Florida, some legal issue or something to do with institutionalization, whatever it may be, and you can get in touch with Jennifer Mathis at bazelon, B-A-Z-E-L-O-N, dot org, and Maria at aapd.com. We have to stick together. You know, if Maria and Jennifer know, oh my God, I didn't know that was happening, they can do something. And I would really encourage you, you know, Jennifer, our listeners have actually had results through, you know, all of our shows. And I am telling you, AAP.com, Bazelon.org, AAP.com, Maria Todd, CEO, and Bazelon.org, Jennifer, Senior Director, and Mathis on the mic. We can never let that up. I also have to say, have a shout out to Veronica Villalobos, the Chair of the Board of AAPD, and Eve Hill, the Chair of the Board of Bazelon. And of course, we always miss Holly O'Donnell when she's not here, um, from Bazelon. But I want to thank both of you, and I want to ask all my listeners to send this show to everyone. You know, you're seeing it on YouTube, but you can go back and get it from YouTube, uh, or Spotify. You know, we're at whatever your social media platform is, but I'm going to urge you to really keep in mind what I said about letting them know what's going on. And Maria will be looking for your words of leadership and advice as we move forward.

Can I share a quote, Joyce?

It's quick. Yes, of course.

It's from John Lewis, but it's one that I turn to a lot. So he says, "Do not get lost in a sea of despair. Be hopeful, be optimistic. Our struggle is not the struggle of a day, a week, a month, or a year. It is the struggle of a lifetime.

Never ever be afraid to make some noise and get into good trouble, necessary trouble." Well, that is going to be our quote of the day because, wow, doesn't that say it all? So powerful. So powerful. And there is hope, but you need action. Maria and Jennifer, we love you. I appreciate everything you're doing. Thank you for being on. And of course, Jennifer, I'll be talking to you every week. So anyway, this is Joyce Bender, America's Voice. And in the words of Mary Brooker, when you get up tomorrow, remember, Choose joy. Talk to you all next week.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11:00 AM Pacific Time and 2:00 PM Eastern Time for another installment of Disability Matters right here on the Voice America Variety Channel. We are the leader in live internet talk radio. VoiceAmerica.com.