ANCOR Links: Episode 2

André Floyd

Welcome to a brand-new episode of ANCOR Links. We hope you enjoyed our debut episode. And if you haven’t listened yet, you should have plenty of great insights about the direct support workforce and some incredible people sharing some important perspectives, and information. In this episode, we are going to talk all about advocacy. Not only do we have our annual Policy Summit & Hill Day coming up here at ANCOR, there are also lots of important pieces of legislation to know about and advocate for. And of course, we all know 2024 is a presidential election year and what’s more direct advocacy than voting? So, in this episode, ANCOR’s Sean Luechtefeld and Lydia Dawson are going to preview key public policy efforts and preview our summit. Then we’ll hear from Josh Rael from Alliance Colorado who’s going to speak about all the ways advocacy has changed, plus shares tips for everyone who wants to join in whether at home or in person, or perhaps both. Then, of course, Alexia Kemerling from the American Association of People with Disabilities is going to join us to talk about barriers to voting that people with disabilities face, how the REV UP campaign is trying to help, and how you can join them and how you can understand state by state, how to get more people with disabilities to have their votes counted. But first, here’s Sean and Lydia to preview our Policy Summit & Hill Day, and also talk about public policy a bit more in general.

Sean Luechtefeld

Hi, everyone. My name is Sean Luechtefeld. I am the vice president of membership and communications for ANCOR. And I am thrilled to be joined with my friend and colleague, Lydia Dawson, who is our senior director for government affairs. Lydia, welcome to the program.

Lydia Dawson

Thank you so much, Sean. It’s great to be here.

Sean Luechtefeld

So we’re going to get into a little bit of a discussion about public policy as it affects people with disabilities in just a minute. But before we do that, you lead the government relations team at ANCOR. And I’m curious if you can talk a little bit about what that means. What is kind of the day-to-day work of the team? And what is the team ultimately trying to accomplish?

Lydia Dawson

Oh, absolutely. Well, I’m so grateful for the opportunity to be part of the ANCOR team, and to work with our government relations team to effectuate good public policy that supports our members, the providers supporting people with intellectual and developmental disabilities to thrive and ensure access to services. Our work is really about analyzing public policy that exists public policy, when we might want to see an opportunity is to really ensure that our members have the tools that they need to provide supports that allow people with intellectual and developmental disabilities the support and services that they may want or desire to thrive in their communities. So this work can really look like serving our membership, to analyze the impact of a piece of public policy. It may be submitting comments to better inform agency work. It may be working with community stakeholders, or working with our members to better understand what things look like on the ground, and really just moving forward, good sound policy that supports people with intellectual and developmental disabilities to live and thrive in their homes and communities.

Sean Luechtefeld

So what are the biggest challenges facing people with disabilities right now?

Lydia Dawson

The greatest barrier to accessing services in the home and community is the direct support workforce crisis. Because of decades of under-investing in home and community-based services, we’ve seen a stagnancy in reimbursement rates and payment that goes into the service support structure. And because of that, community providers are really struggling to be able to pay direct support professionals who provide that support and assistance for people with intellectual and developmental disabilities to meet their goals and needs in the community, a competitive wage with other entry-level industries. And so you may have food service or convenience stores or retail stores offering an entry-level wage. That’s much higher than what community providers can offer. And it’s really based on the the setup of funding that goes into providing supports and services. Organizations that are providing those supports and services are primarily funded through Medicaid and the states set the payment for those services. Community service providers don’t have the ability to change what they’re receiving in terms of funding in order to fund those services. There is no ability to change what the private market like you might see some private industries able to do. And so because of that, it’s incumbent upon states and upon the federal government overseeing those programs to ensure that services are adequately funded. But when we see a stagnancy, if we see, rates go on adjusted for increased labor expenses, or we see the rising cost of goods and services. But we don’t see that same commensurate increase in the funding that goes into services. We see providers are unable to offer higher wages, making them non-competitive with these other industries, which truly contributes to the workforce crisis. But ultimately, what we’re seeing in the field is that that workforce crisis has really reached the limits that they’re unable to continue providing supports and services, your turnover and vacancy rates really can only go so high before you’re unable to adequately provide the service any longer. And so while we’ve seen that, that workforce crisis for decades now, really, what we’re seeing in these last couple of years is an increase in program closures that organizations are really struggling to, to continue offering supports and services at all.

Sean Luechtefeld

So, rumor has it that ANCOR is hosting its annual policy summit on Capitol Hill, just in a few weeks from now, how does that fit into the broader advocacy strategy here? And what is it that you’re most looking forward to when it comes to the policy summit this year?

Lydia Dawson

Oh, well, I am looking forward to everything having to do with the policy summit this year. I’m so excited about it. And I hope to see everyone there. But I’m very excited to see our membership and the people that we support out on Capitol Hill, bringing that education bringing awareness to the work that they do, and, and really out there advocating for, for our government to value the services that we offer. But I’m excited about all of it. Honestly, I’m excited for the opportunities to see everyone. I’m excited to hear from our incredible speakers, what it looks like on the Hill, what the administration is thinking about for next steps, and how we can fit our advocacy into the goals of our country as a whole. Not only how do we bring that public awareness in a way that people can understand and value what we’re sharing, but also how can we make sure that our services reflect the goals and directions of our, our government, in our communities in our country as a whole. So I’m excited to hear about the future of services. I’m excited to bring back the incredible content that I hear at the public policy summit and incorporate into our government relations strategy and grassroots efforts to really get the word out about the incredible people that we represent and the opportunities that exist in the future.

Sean Luechtefeld

Well, I know I’m also looking forward to all of that, and there’s going to be just so much! So if any of our listeners are interested in learning more about that event, you can find information on our website at ancor.org/2023summit. That’s ancor.org/2023summit. But in the meantime, Lydia, thank you so much for spending the time with me today. I really appreciate your insights. It’s always a great time chatting with you. And hopefully, we’ll see each other in Washington in just a few weeks.

Lydia Dawson

Sounds great. Thank you.

André Floyd

Thank you so much, Sean, and Lydia, and if you need that website, again, it is ancor.org/2023summit. Or of course, you can always scroll down to our show notes where we will put important links from topics discussed throughout each episode. So up next, we have Noah Block and Josh Rael here to talk all about advocacy. How has it changed? What are some ways new ways that you can advocate right now? What are some things you can advocate for whether at home or in person? So here’s Josh, here’s Noah.

Noah Block

Hi, again, my name is Noah Block and I’m the advocacy manager here at ANCOR and I’m so glad to be with Josh from the Alliance. Josh, could you tell me a little bit about your background and your experience in advocacy but particularly for folks with I/DD, but just in general, I’m curious to hear what your experience is.

Josh Rael

Yeah. Thank you, Noah. And thank you ANCOR for having me and what an honor to be on your podcast. As Noah said, my name is Josh Rael and I’m the Executive Director of Alliance. Alliance is Colorado’s I/DD association. We have about 20,000 people that our members serve with intellectual developmental disabilities and employ about 10,000 all around the state. I grew up in Southern Colorado and I’m from Pueblo and I’ve always had a passion for politics and policy, which made me interested in law, so I ended up moving to Denver about 20 years ago to attend law school. At the time, I was working for a state senator, and I just really enjoyed going to the capitol and listening to these debates and understanding how important bills that are being passed, how they affect so many people. So I ended up right after law school, going into lobbying for about eight years and Alliance happened to be one of our clients. And so, and then I was really privileged and honored to be their executive director. They chose me about nine years ago. So that’s been my, my background on how I got to Alliance, but the I/DD side has always been a passion of mine as well, from a young age, I grew up a lot of my friends in school, and a lot of my friends siblings, had people with intellectual developmental disabilities in our in our group. And so we’ve grown up with people with I/DD, friends, and just colleagues throughout my career. So it’s just been something of a passion of mine. And it’s an honor to be able to work with them through the providers that provide services to them.

Noah Block

Yeah, I love that. I mean, I think for me, I think about how so many people in our work have a personal touch to this work. I mean, for myself, as someone who has disabilities, and also grew up in a family of health care providers, seeing both sides of that coin is both helping to give that perspective, but also recognize the challenges that both folks with disabilities have and how providers struggled to be able to make ends meet than day to day, at the same time is trying to provide high-quality services. So, I appreciate that, Josh, that that that personal anecdote there. What interested you though, originally, in working with providers of I/DD services?

Josh Rael

I think what really interests me was while I was working at the Capitol and listening to all these different debates and learning about the state budget, and all the processes that went through funding services in the community, I realized how dependent the providers but also the people in services, and their families are on the government for these services for the life changing, often life saving services, you know, Medicaid home and community based services or HCBS services are, are really those governmental functions that we all rely on to make sure that are those the people that our members represent rely on to make sure that they have their daily needs, their long term needs. And I didn’t realize that 90 plus percent of all of the funding that is going to those communities was from the state federal government. So all the regulations and all the rules and laws that are passed. And so to have to be able to work in that space, and to advocate for change, for evolution for better services, was affecting thousands of people in our state, millions of people across the country in a really good way, you know, and so seeing that firsthand at the Capitol, and then and then lobbying for the group, and then now being their executive director, it’s just it’s kind of like checked all boxes for me of, of what I wanted to do with my career. And my law degree.

Noah Block

Yeah. And that also, just to put a finer point on it, the ridiculousness that HCBS services are considered optional in the vast majority of states, right? how critical these are for folks to be able to live in their community, in a setting of their choice. But at the same time, so many states consider those services to be optional. It’s just a really, I think, a sad, sad statement in terms of what our values might be.

Josh Rael

Yeah, no, I agree. The fact that they’re not an entitlement means that states can have waiting lists. And most of them do, right, people are waiting for these services. Colorado, we have about 3,000 people waiting, and we every year, go back to the legislature and say we need more people to get the services that they need, and that they want in the communities of their choosing. But of course, there’s a huge price tag attached to that. And so that’s part of our advocacy effort is to do the education to let people understand why it costs money, what the wraparound supports are in the communities and how expensive it is to live in those communities.

Noah Block

Yeah, I thank you for that. Do you feel like within that, within that context, that is also the most common thing that’s misunderstood about Alliance and the providers that are in your association?

Josh Rael

Yeah, I think that, you know, often people from my experience over the last 17 plus years of working for providers, is that people think providers can’t be advocates. And I think the reason that they think they can’t be advocates is because they get paid for what they do. We our members get paid Need to provide a service. But that’s so far from the truth our members are advocates through and through, they’re the most often the most important people, in people with IDD’s lives outside of their family or their guardians. Because they’re with them everyday they’re doing those supports and services, they’re making really impact an impact on people’s lives. They are the ones from case managers, to direct support professionals to executives, they’re working around the clock to keep people healthy and safe. We’re wanting to make sure people live person-centered lives, which means that people get the supports that are important to them, but also important for them. But these providers are also having to run a business, they’re having to break even, or if they’re lucky, make a little bit of profit. But that’s usually not the case with a lot of the expenses that it costs to really just do the cost of business, but also comply with the rules and regulations and, and the housing market and the inflation and all the things that go along with just running a business. So they’re not only, you know, having to care for the people and make sure that they’re there. They’re doing that work, but they’re also having to just run the business and comply with all the other rules and regs that are coming down from the state and federal government.

Noah Block

When you worked at the capitol in Colorado, what did you really see what’s the most effective strategies that advocates when they came to you when you were a staffer?

Josh Rael

Those strategies are the strategies that we try to use now. It’s, it all starts with education, I think education is the most important key to all advocacy. Because whether you’re talking to a legislator, a state employee, a parent, or just somebody who doesn’t know what it is, you need to start with just the basics. And so that often takes years, sometimes you have what they call an elevator speech, 30 seconds. But really having the appropriate tools to do that advocacy means that you have done your work on educating yourself and you have talking points, or you have some lived experience where you have the ability to, to really help inform those policymakers on, on what it is that you’re asking them on, on the policy or on just really getting to know the community. So we know we rely on education, but there’s also another there’s a lot of other parts of the advocacy that are important, like meeting with stakeholders, you can’t just do this in a vacuum. You know, it’s all about building the relationships with families, states, with the state employees, with other providers, you know, people, people in services in particular, that ones that are going to have to implement all of these, these rules and laws are likely providers. So make sure that you know, you speak to everyone before you start just pushing your agenda on folks. And then of course, there’s the negotiation, we always say we don’t run bills just to run a bill, changing the laws serious business, and it should be reserved for those serious issues. And so, you know, everyone has to come and negotiate in order to have that true advocacy work.

Noah Block

And so within your career, I’m curious looking at like the landscape of advocacy work, what has changed over time, what have you seen, it’s been different since when you when you first cut your teeth and this work, versus, you know, today’s advocates and how we’re pushing the conversation for what has changed in your mind?

Josh Rael

Well, the digital age, of course, is the first thing I think of, and of course, COVID expedited that for all of us the ability to use social media and technology and understand all these really cool tools that are now available to us to advocate and to keep in contact the Educate by three, you know, the technology is just something that has, it has it has an ability to lift up so many voices, some of the some of the most important areas I think that people should really pay attention to if you haven’t already is social media. Of course, every legislator almost every legislator has a Twitter or Facebook account where they post their thoughts and their pictures and their bills and they’re, you know, follow them find out who’s who’s on your side and who’s advocating for you or build those champions. By visiting their town hall, you can do that from home. Most of them have the zoom town hall meetings now. So you don’t even have to leave your house to join in and just listen, you don’t have to talk. You don’t have to, you know, ask questions, but even just listening to some of those legislators and where they’re coming from and they all have stories, just like we all have stories. We are so surprised to always hear how many people have a connection to the IDD community just by listening and hearing their personal adventures and their journeys. But there’s also webinars and stakeholder meetings. Our state, for example, does such a great job hosting informational meetings, we have a lot of system change happening right now there’s opportunities for conferences that are online. This podcast is a good example, right? Like this is new, this is something that we’re just now starting out trying to figure out if this is a new way of people to allow people to get that information. But don’t forget about the emails and phone calls, you know, and even a referral letter that’ll still work. There’s a lot of ways to advocate but for sure, the digital age has been the technology advancements have been huge for the advocacy space.

Noah Block

Yeah, I mean, I think you know, what anchor uses is our amplifier page or Action Center. For those of you who are interested, take our action alert, as Josh knows, I always say go to ancor.org/amplifier. But you know, it has really changed the game or the intensity in which the or their requirements for folks to participate, they don’t have to take a day off work to go to their capitol building. And talk literally, they can just shoot them an email, they can give them a phone call from their cell phone. They can do it every day, you know, this is it’s really changed the conversation about the ability to create mass movements, for not just disability work, but any social justice work that we’re doing to improve the rights of people with disabilities and the community at large. So it’s really obviously changed the conversation for folks like us, and we have to take a step back and question, how do we engage with our membership, because now they’re getting blasted all these different ways, whether or not be Twitter, Facebook, LinkedIn, threads, I mean, there’s just so many different platforms that we have opportunities to both touch advocates, but also engage with our members of Congress or legislators. It’s just it’s really changed the conversation, just in the last decade. And I think we’re all still trying to figure out what does that mean now? Josh, do you feel like that there is, there’s still benefits for in-person meetings? You know, what, what do you see when you’re meeting with folks in person that you don’t necessarily get over a zoom screen?

Josh Rael

Oh, for sure. There are benefits, I think that having that face-to-face conversation, the Zoom box is great, but it’s sitting down and just meeting somebody seeing how tall they are, you know, like everyone always says, Oh, you’re so tall. Well, you can’t tell that on Zoom. But, really just getting to know them as a person is hard to do in the social media, or the technology space that we’re living in right now. But I’m sharing those personal stories, just being able to have that human connection is important. But it’s really fun to be able to, to, like, for example, at the anchor conferences and summits, and to listen to the experts that are brought in from all around the country, to see their body language and their expressions and how pumped up, they get to advocate, right, that’s, that’s what we all do in the room, looking around the room and seeing the smiles or the frustrations or all the motions and then clapping it out at the end. And knowing we’re all in it together, you know, those are just the moments that you can’t replace.

Noah Block

Those things are real, I mean, the way in which we’re also able to express our emotions, I think with storytelling, it’s just so crucial. The ability to have people really see you as your authentic self and an in-person environment just as it’s unrivaled, to assume screen, but also, except for the sense of accessibility. It’s huge to be able to do this at the same time. So, it’s how do we balance those dual needs? Really, really, I think it’s a challenge for all of us to grapple with. And we’ll probably continue to do so for some time. What bills are you looking at the federal level that you’re really paying attention to?

Josh Rael

I just used your action alert tool this morning to contact my senators to ask them to support the role of direct support professionals. This is the SOC bill right, the Standard Occupational Classification bill. And if you haven’t listened to the first Links podcast, I think Joe Macbeth did an excellent job you did you all did a great job, really getting in-depth on why that bill is important. You know that that classification would be set up to allow states and policymakers to really understand the scope of the workforce crisis, and to collect the data to legitimize the direct support workforce. It does a lot. It’s the very first step of a long journey that we have to continue to fight for DSPs. And of course, funding is really important in that fight, and this can really help collect a lot of that information, and data and help states hopefully increase funding for those folks as well. But the bill, you know, it’s something we’ve been following for years. But wow, how cool is it to see that it passed the Senate Homeland Security and Government Affairs Committee unanimously, all of the senators voted for that committee. And I think, you know, the big part which, which is helpful to continue our advocacy is there’s no fiscal note on it. So that’s, you know, that’s one of the bills that for sure, we work on, and we continue to try to get support. That’s been that’s been one that has been really close to me, because I’ve worked on it for so many years. But there’s also the direct care Opportunity Act, and the supporting direct care workforce and family caregivers acts, those are award grants to build and retain and train and promote the direct support workforce, you might hear a theme here direct support workforce to export workforce capacity, right, I think that’s what that’s what all these bills and all of our work has been, especially after COVID is, is trying to find grants, educational opportunities, training, and for, for unpaid family caregivers, as well. So this bill would establish career development and advancement strategies for those direct care professionals and, and include occupational frameworks and national standards. Those are other bills that are really important to us because we need a direct support workforce to provide these services and to make sure that they’re high quality. And then of course, speaking of funding, we have the Better Care Better Jobs Act, which is legislation to enhance the federal Medicaid assistance percentage, which we call FMAP, part of that alphabet soup that we always refer to. But that FMAP increase would allow for states to address the payment rates to provide recruitment and retention for those DSPs. So that’s where the funding component comes in. I can go I could go on, but I feel like that’s just the tip of the iceberg of what’s happening in the IDD home and community-based services right now.

Noah Block

It really does feel hard to keep an eye on all of the different things moving, and all of the different things being thrown at all of us. You know, just to go back on that three-legged stool that building that retaining that training direct care workforce, we heard from Monique St. Clair, our National DSP Of The Year winner, during our last ANCOR links episode. And we heard how difficult it is to be able to DSP as someone like myself, who worked in the direct care workforce, around peer support as a peer support specialist, I know firsthand, and Josh, you know, working with the DSPs day in and day out how difficult that job is. And if we’re not able to retain them, train them to be the best selves in their job and build out that workforce. We’re going to have serious problems, we continue to have an aging population. And we continue to have more and more folks who are choosing home and community-based services. It is it’s a problem that’s going to get worse before it gets better if we don’t begin to start addressing these really key components in things that are just smart policy and sensible solutions. So just one more question, Josh, I think you began to heal. And I’m curious, what are you hopeful for? What are you optimistic about? As we continue, the work we’re doing for IDD providers, and increasing and advancing the rights of people with disabilities? What are you excited about and looking forward to?

Josh Rael

I’m excited for all of the really great attention that our HCBS industry is getting at the federal and state level, we have some really good support from the President, governors and representatives everywhere who know what HCBS is, I hope and I’m hopeful that we will have a livable wage for our DSPs we will end waitlists across the country, we will look at some outdated policies that maybe can be either removed or evolve, there’s a lot of opportunity to make sure that the people that we support and the providers and businesses that support them really do great things. We’re going to evolve from, you know, institutions to as least restrictive settings as possible. And we’re going to do really great things in the future because we’ve done really great things in the past.

André Floyd

Thank you so much, Josh and Noah, that’s a very good conversation about advocacy and how you can engage wherever you are, whether at home or in person, or of course, both. And now we’re going to link that to one of the most direct ways that anyone can advocate for themselves in the world that they want and that is through voting. We know that the disabled vote is lacking many, many voices. And there are a lot of reasons why. So we’re going to have Alexia Kemerling come and talk to us and give us some data on how many of those votes go missing each year, what can be done about it, and how you can get involved in your state and your community to help more disabled people be able to access the polls be able to make their ballots count during voting seasons.

Tricia DePalatis

Hi, my name is Tricia DePalatis, membership assistant at ANCOR. And I’m here with Alexia Kemerling, the REV UP coalition coordinator at the American Association of People with Disabilities, or AAPD. Alexia, welcome to the podcast.

Alexia Kemerling

Thank you so much for having me. I’m excited to be here.

Tricia DePalatis

We’re so excited to have you. So, this is our second episode of the podcast. It is airing a couple of weeks after disability voting rights week. And we really wanted to have you on to talk a little bit about that campaign and fill us in on some of the barriers faced by people with disabilities. Would you first be able to provide a little bit of information and data points just to help us understand the accessibility barriers faced by voters with a disability?

Alexia Kemerling

Yeah, absolutely. Everyone’s always a big fan of statistics, so we can definitely start there. It kind of helps paint a picture. Rutgers University and the US Election Assistance Commission have done surveys in the past couple of cycles about the disability vote. So, their data from the 2022 elections, they found that one in five voters with a disability, either had difficulty voting or needed assistance to be able to vote, which was three times the rate of voters without disabilities. And so those barriers then impact the overall turnout of disabled voters. So in 2022, we saw that people with disabilities voted at a rate of 3.6 percentage points less than non-disabled voters. One thing that’s interesting to me is that the turnout gap between disabled and non-disabled voters in 2020, and 2022 actually shrunk. So more disabled voters are turning out. But there are reports of difficulty voting increased in many cases. And I want to really emphasize that the reason that we see such a stark turnout gap is because of the barriers that exist in our policies and fantasies around elections. So I think you asked about that, too. So I can share a little bit of information there. But do you have any questions about the overall turnout?

Tricia DePalatis

I was curious if is there an estimate on the untapped potential, you mentioned the percentage of people who were struggling to vote because of barriers. But what about how many additional voters do you think would be able to engage in elections in the US if some of those barriers were removed? And there was more of a focus on accessibility in elections?

Alexia Kemerling

Yeah, this was a great question. So people with disabilities make up a pretty significant voting bloc in the United States, there are around 38 million people with disabilities who are eligible to be voters. And honestly, I think that number is probably a little bit higher in 2023, than when it was reported in 2020. If people with disabilities voted at the same rate as people without disabilities who have the same demographic characteristics, so across age, across race, across gender, we would probably have around 2 million more voters in our elections, which is pretty significant.

Tricia DePalatis

Yeah, that’s huge. That is a really large number. And it makes us understand the importance of leveling the playing field and promising, you know, equal rights for all people and access for anybody who wants to practice their political agency. You mentioned that in the last few years, that although there has been more turnout, which I think goes across the board, because we’re in a very politically active time, that there have been more people reporting difficulty and barriers to being able to vote. There have been a lot of laws passed in many states that have made it more difficult for folks to vote. How have these policies disproportionately impacted people with disabilities?

Alexia Kemerling

Yeah, that’s a great question. Unfortunately, there are so many different ways we could dive into that question. So just for the sake of our conversation here, I want to focus it in on a couple of trends that we’ve seen. So the first is photo ID requirements to be able to register to vote and even to vote in some cases. Those have really increased across states in the last couple of years. I think. 37 states now and 2023 have photo ID requirements. And this disproportionally makes it harder for disabled people did vote for a couple of reasons. One, people with disabilities who are not drivers are less likely to have photo IDs, people with disabilities are less likely to have current photo IPs, which is part of the law in some states. And then another piece of it is if the elections require a signature match between the ID and when you show up to your polling place and sign in order to get your ballot, that can disenfranchise a lot of disabled voters to people who are blind or low vision or people whose disability might affect their dexterity are not able to recreate the exact same signature every time and so their ballot could get thrown out for no reason. And this, this impacts, vote by mail and absentee voting, and some states as well that require voters using that method to sign their ballot envelope. And a lot of states have even gotten rid of the process of carrying your ballots when it relates to signature match and carrying your ballots as when they identify an error or piece of missing information.

Tricia DePalatis

And they’re supposed to send it to you to correct if they see an error. There are some states that are not even attempting to contact that voter?

Alexia Kemerling

Yeah, that’s correct. So you then have less confidence that your vote has seen and been counted. And so that kind of gets into another piece of some of the state laws that we’ve seen creating barriers for disabled voters. And those are policies that are specifically limiting or targeting vote by mail or absentee voting. In that same Rutgers and Election Assistance Commission study I referenced earlier, we saw that states that expanded their vote-by-mail policies had higher voter turnout overall, across disabled and non-disabled voters. But some states have made it harder to vote by mail, have put restrictions on who can help you return your ballot in a drop box, some states have removed drop boxes, and some states have even added criminal charges to ballot assistance. And that’s something that is really scary in terms of people being able to access their rights and goes across some of the federal protections that we do have in place such as the Americans with Disabilities Act and the Voting Rights Act, which both say that you should be able to get assistance from the person of your choice in order to vote, so long as that person isn’t your union labor leader or your boss. But there are also some practices that aren’t necessarily in law that still impact disabled voters. And that can be things like guardianship, that can be a really confusing topic for many people, which is part of the barrier. So there are only a very small number of states that blanket statements say that if you are a person with a guardian, you cannot vote, the majority of states say something more. So along the lines of if you have a guardian, you can vote and unless it says that you can’t in your guardianship order, or the state law will say the opposite. And so many people with disabilities are still subjected to what is sometimes called mental capacity tests, and are asked to demonstrate an understanding of the election systems and voting that we don’t subject any other population to. And frankly, should be illegal. And even though that isn’t as common anymore. In most states, there still is a lot of confusion around whether or not you can vote when you have a guardian. And there’s a lot of misinformation. For example, if the state law says to look into your guardianship order, and you don’t see anything about voting, you might assume that means you can’t vote, when in actuality it means you can vote. So it can also contribute to a lot of ableism and prejudice against people with disabilities. So providers, poll workers, even family and friends might assume that the person with a disability can’t vote or maybe shouldn’t vote when that is not the case at all. So if you are someone that has a guardian, I definitely recommend that if you feel any type of confusion or hesitancy around that you talk to the disability rights organization in your state, because they can help you understand your rights and make sure that you have access to your boat. And then the other thing I wanted to mention, as well is that some of these voter suppression laws and tactics that we’ve talked about, not only impact people with disabilities broadly, but they tend to have the hardest and most intense impacts on people who are multiple marginalized. So Black disabled voters, disabled voters living in rural areas, people who have multiple marginalized identities are sometimes the most targeted. Not sometimes they are the most targeted groups by these voter suppression laws. So it’s really concerning with how many people we are excluding from our democracy, when we do not have accessible elections. Yes, there’s a lot of variables that are combining and building one to one another, for sure.

Tricia DePalatis

So I think you did a wonderful job answering that question and helping us understand all of the reasons why it’s so difficult and why people are facing these barriers. What recommendations do you have for states and local governments if they are striving to make their voting methods more equitable and accessible?

Alexia Kemerling

Yeah, this is a really good question. So I think, a couple things, policies that are just generally good policies for voter turnout, like having more early voting hours, having drop boxes, having no excuse vote by mail, all of those are things that help people with disabilities turn out to vote as well. And then a couple of other things I would encourage state and local officials to look into is really enforcing polling place accessibility. In 2017, the Government Accountability Office did a very broad survey of polling places across the country. And I found that 60% of polling places have at least one issue that made them inaccessible. And sometimes, yeah, it’s pretty absurd. And sometimes those can be things that are not wrong with the building itself, but that come off the day of. So for example, I’m a poll worker. And one year I was working and someone wanted to prop the door open for the polling place, great idea. But they put like a giant box of heavy paper in front of the door, that then would have made the like pathway too narrow for a wheelchair user. So it’s little things like barriers can be created on the day, or if a poll worker doesn’t log in and turn on the accessible voting machine, which happens more often than we would like to think. I think one way that states can really get at that is by having a designated person on Election Day whose job it is to go to the polling places and ensure that accessibility is being met. You know, I have empathy as a poll worker, that there’s a lot of rules, there’s a lot to learn, there’s a lot of training. So I don’t think it should fall to the people already doing the work. I think it should be designated to one person so that we’re sure that it’s getting done and being taken care of. Another thing that the disability community is really interested in seeing more of is options for electronic remote voting. So this is something that is available to uniform. And military folks who are overseas on election days and might not have access to reliable mail. So they can’t physically mail in a ballot, they can vote through an electronic portal through email or through fax. And there are 11 states that offer this for people with disabilities as well. And I would really love to see more of that. Because, you know, for some disabled voters, that is truly the only way that they can vote completely independently and privately. Many people with disabilities need assistance filling out a paper ballot. And if you can’t verify those choices yourself, you kind of just have to trust that someone else is doing what you ask. And so that’s not truly private or independent. I know that there are a lot of concerns in the broader voting rights and in the security community, that there’s not good ways to truly make sure that that process is secure. But I think that it’s something that we need to be investing, research and resources into, and collecting better data on and how it’s being used now, because it really is a solution that would provide a lot of access for a lot of people.

Tricia DePalatis

Well, especially when you say that it’s already being used for certain populations, and there is that capability. So, yeah, 100% Yeah, that’d be an amazing way to make it more accessible for everybody.

Alexia Kemerling

Yeah, I think if it’s, it’s good enough for our military. Overseas, it should be good enough for the people who need access right here in the United States as well. Definitely.

Tricia DePalatis

What would you say that advocates and providers can do to support disability voting rights beyond disability voting rights week, which takes place each September.

Alexia Kemerling

So I always, and people who work on voting rights are always saying that voting rights work is something that happens year-round, it’s not just in the fall, or just in the spring, or for those states out there having special elections just in the random summer month. It really is a year-long process. So there are a couple of different things that I wanted to touch on. First, I do want to encourage people to make sure that they are familiar with the laws and their state about what they can and can’t do in terms of voting. There are some states that specifically restrict staff in nursing homes or in other congregate settings like developmental centers, from assisting voters. So just make sure that you know the laws in your state. And I hate that I have to give that disclaimer because I never want to scare people away. And some of those laws are being challenged. But it’s just good to be aware. However, registering someone to vote, or helping them apply for an absentee ballot or taking him to the polls is not the only thing that you can do. You can also just talk with the people in your community, talk with your peers, about voting about why it’s important about what kinds of things you can vote for in your community and how they impact you. I work in a national organization now, but I got started in Disability Organizing in the local level, and then in the state level. So I’m very passionate about making sure people know that those elections are super important for the disability community especially, for example, if you’re someone that means accessible transportation, the funding and rules around transportation are decided at a local level, the funding and rules around like libraries, housings, parks, all of those are decided by city councils and mayor’s, or whatever the government structure in your local area is even things like legislation on voting, right? Like we keep referencing state rules, those are passed by legislators, the representatives and senators that we elected at the state level and that the people in DC, although they discuss voting as well, the states have a lot of power over what that looks like. And even things like if you’re someone that uses Medicaid, or Medicare-funded resources, like home and community-based services, those are federal programs, but they’re administered at a state level. So the people that are involved in those agencies, those people can be impacted by who’s in the elected government at that time. So I think just having those conversations in your communities can be really helpful. And also conversations helping people understand their rights, and also understanding their options for how to vote. I know you mentioned congregate settings briefly like people who are living in group homes or nursing homes, or developmental centers. A lot of times people in those settings think that their only option if they want to vote is to vote by mail or vote absentee. And I really feel strongly that everyone should be able to choose the method of voting that’s most important to them. And that works the best for them. Unless there is something about the rules you have in your setting that don’t allow you to leave. There are some areas where the board of local, the local board of elections can come to a setting and help you vote. There are other resources out there for providing transportation to the polls to vote, and then all of those are things that for most people are not going to be last-minute decisions. So thinking about those options and talking them about them throughout the year is a really good way to get involved in advocacy.

Tricia DePalatis

Absolutely. So it sounds like it’s very important for agencies to make sure that they have a committee or department that’s think thinking about election season and all of the special elections throughout the year and making sure that there are options and planning Uh, you know, conversations being had well ahead of time so that they are making sure that they are abiding by the laws, but also providing folks they serve with the options of, would you prefer an absentee ballot? Do we need to make sure we have transportation setup? All of those things? That’s, that sounds very important.

Alexia Kemerling

Yeah, there are a lot of self-advocate voting leaders I know who are really passionate about making a plan to vote, and very passionate about making sure that providers and direct support professionals direct care workers are involved in that process early on, and that they know they have a responsibility to support their client if their client wants to vote. That is their right. And if they need the supports to get that done, the team is responsible for being involved in that.

Tricia DePalatis

Awesome, that makes a ton of sense. And you are the coalition’s coordinator of the rev up campaign at AAPD. Can you tell us how rev works and how people can get involved in their own communities?

Alexia Kemerling

Yeah, of course. So REV UP is an acronym. We know we love acronyms in the disability community. REV UP stands for register, educate, vote, use your power. And it was started in 2016. It actually started as a more local movement by a disability organizer in Texas. And then it grew that AAPD to kind of help it grow more nationally. But at its core, REV UP’s goal is to build the power of the disability vote. And we do this through a couple of different ways. One is through encouraging voter registration and get-out-the-vote types of efforts. And then the other is through advocating for accessible voting and providing information. So we want to build our power while also giving information about the very real policies that exclude disabled voters from the ballot. But we are big believers in the power of local change. So we have state coalitions in multiple states as well as local partners and individuals. And these coalitions tend to meet monthly or BI monthly, they are disability-led, and they kind of differ from state to state some states focus more on getting out the vote types of events and voter registration. Some states hold nonpartisan disability candidate forums. For example, last week, Houston, wrap up Texas held a candidate forum for the mayoral election in Houston. And actually, all 11 candidates came to it, which is very exciting. That’s funny, then, yeah, and then they also REV UP coalitions do things like accessibility audits of polling places. Another thing that’s really popular with REV UP coalitions is hosting demonstrations of accessible voting technology, both to educate disabled voters and to educate the broader community on what should be happening access-wise at the polls.

Tricia DePalatis

What are some resources for listeners who want to get more involved in advocating for disability voting rights.

Alexia Kemerling

So the best way to get involved with rev up is to go to the AAPD website. And you’ll find all kinds of information you can learn if there’s a REV UP coalition in your state. And you can also sign up for our mailing list. But I also wanted to say that if there isn’t a REV UP coalition in your state, we can help you start one. Or if you’re just interested in being involved as an individual, that’s totally fine too or if you’re already part of a disability organization, you can just be involved as a partner. There’s, it’s truly a grassroots movement. So there’s not a ton of bureaucracy involved. We really just want people working together to build the power of the disability.

Tricia DePalatis

I just really love all of the suggestions you’ve given because it allows anybody who wants to get involved to either join their local coalition in their state or even create a new coalition. So I really appreciate everything you’ve shared. And you’ve already provided your website people know your name and where to find you. But are there any other resources for listeners who want to get more involved in advocating for disability voting rights?

Alexia Kemerling

Yeah, absolutely. One of the things that we do at AAPD is recreate state voting guides for disabled voters. One of the other barriers that we didn’t talk about earlier, but that I do want to mention is, it can be really hard to even find information on how to vote in your state. And sometimes it can feel like you need to be an attorney to understand those rules, especially if you’re someone that needs accommodations, trying to figure out what accommodations are available to you, and how to get them can be really difficult.

Tricia DePalatis

A lot of the ballots are written at like a grad school level, and they’re not really accessible.

Alexia Kemerling

Oh, yeah. 100%. Yeah, the, the average ballot measure, which is something that’s on, that you can vote on, that’s not a candidate, but more so a law or rule in your city or, or area, they’re in like grade 19 or something, which is like mid grad school. And sometimes I want to point out that that can be intentional. You know, they don’t want voters to fully understand an issue. But we don’t usually get too involved in defining issues at the local level, although some of our REV UP coalitions might take that on. But we do provide just overall guides on how to vote as a person with a disability. So you can go to aapd.com/voter-info and find the guide for your state. We had three plan language reviewers work on these guides with us. So they are accessible to a variety of people with disabilities. And I walk you through like, you need a photo ID and your state. Can you vote if you have a guardian in your state? What do all of those considerations look like?

Tricia DePalatis

That’s incredibly useful. And thank you so much for being with us. We really enjoyed this conversation. We’ll make sure that we include all of those links that you shared in our show notes.

Alexia Kemerling

Yeah, absolutely. Thank you so much for having me.