What's Your Voting Plan?

[00:00:03] Speaker A: I wish I would have had that. I could go and look, read this. Do you know the rules? I mean, how was I to know? [00:00:24] Speaker B: Welcome to the Age of Aging, a podcast about living well with an aging brain, produced by the Penn Memory Center. I'm Jake Johnson. [00:00:33] Speaker C: And I'm Terence Casey. Well, it's October 23rd when we're recording this, which I don't know if you know, but that means that there's the new season upon us here. It's not fall, it's not winter. [00:00:46] Speaker D: Yeah. [00:00:46] Speaker C: You know what we're getting into, right? It's election season. [00:00:49] Speaker D: It's election season. [00:00:50] Speaker C: Yeah. And for some, I think you think about spring as this opportunity for new growth, and then you get into summer and you think of vacations and relaxing under the sun. And fall, for people like me means baseball and football and election season. [00:01:09] Speaker B: Confusion. [00:01:09] Speaker D: Confusion and anxiety. Yeah. [00:01:12] Speaker C: Yeah. Especially here in Pennsylvania, I feel everyone knows, anybody who's listened to the television or has driven on a highway or has turned on the radio, everyone knows that Pennsylvania is really the epicenter of this election season. And so I think we're. We're going to get into that quite a bit today, right? [00:01:33] Speaker D: Yes, we are. So today we're going to be talking about voting, but specifically in relation to people with dementia and cognitive impairment and. [00:01:42] Speaker C: How they could be part of the political process. [00:01:43] Speaker D: Yeah. And how caregivers and other individuals can help people with these disabilities at the polling booth. I've heard you mention a few times now that you go to the polls and work the polling locations. So when did that start? [00:01:57] Speaker C: Yeah, I've always been an advocate for voting twice a year. I think people, too often people focus just on Senate races and presidential races and forget that, in fact, so many of the decisions that are made in politics that impact their lives directly are done at a local level by, you know, township commissioners and state representatives, mayors, school board and so on. So I've always felt that people should be politically engaged, at least at a bare minimum, of being an informed voter in every primary and every general election. Now, our ward leader and help canvas for candidates and knock doors and I do a lot of work with my local committee in trying to inform the local public about the local races that really can matter the most to them this year and beyond. Yeah. [00:02:56] Speaker D: I think, like, coming from New York, there's a kind of a pessimistic view of voting just because I think people only think about the presidential election and New York always swings one way. But it is so true, really, the voting that may not seem like it's as important like local elections, city council, things like that are actually super important and super impactful. [00:03:19] Speaker C: People love to talk in presidential campaigns about how much they're paying in taxes and they choose to ignore that their property taxes are set at a local level. And those are not billionaires and senators and governors running for these positions. It's Mrs. Smith who lives down the block from you. Obviously there are major issues at play on a national level and international level when it comes to these, these high profile, ad driven races. But yeah, local politics can make a huge difference for an individual, a family or a community. [00:03:56] Speaker D: One thing I'm also encountering this year with voting is just how difficult voting can feel sometimes, even for people that are like politically engaged. Election Day isn't a federal holiday. A lot of people have work and I can't even imagine for people who aren't politically engaged in that way or have some kind of disability or older, how difficult it probably is to just vote. And since this major election is coming up, we thought it would be helpful for people to have some information about voting for people with dementia. [00:04:29] Speaker C: I think the message in October for everyone is that it's important to have a plan. And you're right with the average citizen that can be complicated enough, navigating through your options, making sure that you're hitting your deadlines if you're requesting ballot, and so on. But what we have been really focused on is making sure that have a voting plan applies to all, regardless of their level of cognition. [00:05:03] Speaker B: If you live in the US you probably know we're coming up on a major election this November, and as much as we know it's important, voting usually isn't as easy or straightforward as we'd like it to be, especially for people with disabilities and conditions like dementia. To better understand how patients and caregivers can better prepare themselves to vote. This year I sat down with co Director of the Penn Memory center and Executive Producer of the Age of Aging, Jason Carlowish. In addition to his work at the memory center, Dr. Karlowicz has written about and worked on various projects related to the voting rights of people living with dementia. [00:05:38] Speaker E: The moment you start to think about it, it embraces topics related to civil rights, constitutional rights, voting policies and procedures, medicine, long term care services, and supports caregiving, disability rights so truly matters at the intersections of ethics, policy, law, medicine and health care. [00:06:00] Speaker B: While there are a lot of questions and considerations surrounding people with dementia voting, Dr. Karlowish said there's one question he does not give consideration to well, there's. [00:06:10] Speaker E: An unfortunate debate, almost gives too much credence to an unfortunate phenomenon of people thinking that someone who has the label of dementia shouldn't vote. And so to call it a debate almost dignifies what amounts to a discriminatory attitude. Namely, someone who's labeled with a disease like Alzheimer's or a label of dementia shouldn't vote. The question should people with dementia vote? Fits in an ugly history of people questioning whether adults should have the ability to exercise their right to vote. [00:06:39] Speaker B: A more important question, according to Dr. Karlowish, is how to define a person's capacity to vote. [00:06:44] Speaker E: I've had an academic intellectual journey on this question. I've settled on the position that the capacity to vote is what I would call a performative capacity. It's something that you do, you do it, and if you can do it, you have that capacity. So the voting as a performative capacity is picking between two things. And if someone can do that, they can vote, period. And any other effort to sort of assess the things that you need to do to be able to do that is, at best, indirect and worst, discriminatory. [00:07:20] Speaker B: Capacity is applied differently in different places. Dr. Carlos said. In Canada, there's no standard for capacity to vote. So voting is a performative capacity. If you're able to vote, you can vote. In Australia, however, a physician can take away someone's right to vote if they are thought to be profoundly impaired. But this is because in Australia, voting is mandatory, so losing your right to vote excuses you from a fine. If the person whose voting rights have been taken away protests in any way, their rights are immediately restored. In the US Voting for those with cognitive impairment is protected under a few federal laws, including the Americans with Disabilities act and the Voting Rights Act. However, Dr. Carlos said that individual states can still have discrepancies in how they define capacity. [00:08:07] Speaker E: You could have, as a matter of state law, that people who are, say, lack the capacity to vote, can't vote, and you could put into your state law what that means. And there is a federal court case called Doe v. Row, and it was a case of a person with a bipolar illness who had a medical guardianship. And attention to the guardianship was when the person was suffering from their mental illness, it was allowing other people to step in and make decisions. And under that guardianship, though according to Maine law, people under guardianship were not allowed to vote, and Doe sued. Because the point was, there's nothing about the fact that I need a guardianship because of my difficulty making medical decisions that should preempt me from being able to have the right to vote. And the court agreed and tossed out that provision in Maine law. But the court did articulate a standard for what it would mean to have the capacity to vote, which was understanding the nature and effect of voting. Of that was one standard. Most states don't have a standard for capacity to vote and don't take it away under guardianship, but many still do remove your right to vote if you become under guardianship. [00:09:16] Speaker F: So the laws in Pennsylvania, there's no big highlight for people with cognitive disabilities or dementia voting. [00:09:21] Speaker B: This is TJ DeLuca, a Pennsylvania voting advocate. [00:09:25] Speaker F: Whenever you have a disability, there are avenues that open up to you to make sure that you're able to still vote. So a lot of people have to rely on a mail imbalance or an absentee ballot. Other people will request assistance at the polling place, but that has to be done by a friend or a neighbor. It can't be done by an employer. The judge of elections that's there or a union representative can't do it for you either. So there are some restrictions on the help you can receive, but there is assistance available. [00:09:55] Speaker B: TJ said that there's one thing to keep in mind. If you're a caregiver or family member requesting an absentee valid for someone or dropping one off. In some states, you are required to fill out what's called a designated agent form in order to legally carry another person's ballot. You can find this form on your Department of State's website, and we'll include a link to the Pennsylvania form in our show notes. When it comes to physically assisting a person with voting, you can help in any way as long as you're not inserting your own personal biases and are doing exactly what the person is asking you to do. You can read out the candidates, mark the sheet for the person being assisted, and physically submit the ballot. [00:10:33] Speaker E: First of all, all people, no matter, for whatever reason, can ask someone to assist them to vote. But you can't say to someone, I want you to vote for me. You can't delegate your citizenship. What I have to do is say, jason, here's the ballot. The first race that we'll look at is for President of the United States. Let me just read out who are the people running, and you tell me which one you want. You know, which one would you like? I'll. I'll take. Okay, great. You know, do you want to. No, I can't. You know, I can't hold the. I can't. My Eyes are so, you know, side mark. [00:11:04] Speaker F: It is their ballot, and they get to decide what they want to do with it. And you shouldn't pressure them to do one thing or another. You shouldn't pressure them to vote over, not vote. As much as I personally believe every adult in the United States over 18 who is a US citizen should cast a ballot every six months or so. When we have an election, that doesn't always happen. And I have to be careful if I'm assisting someone to make sure that I'm making sure that their wishes are being marked on the ballot and that it's being submitted per their wishes. [00:11:34] Speaker B: If you decide to vote in person, there's always people available to assist you. [00:11:38] Speaker F: When you first walk in, there's usually a table, and it obviously varies from polling location to polling location. First, a polling table is one or two people sitting at it with notebooks. And that's where you sort of check in. And you just want to go check in and you can say, you know, I'm the voter. Hi, I'm so and so. I'm their caretaker. I'm here with them to vote today. And they'll know what to do. They've all been through a training that they go through every year that they know that you're allowed to have a caregiver with you. And if you were to run into a problem there at the table or someone were to question it, there's someone called the judge of elections at each polling location, and they're sort of the referee for every polling location. [00:12:18] Speaker B: In 2020, Dr. Karlowish, along with colleagues at the Penn Memory center, worked with the American Bar association to create a guide to assist cognitively impaired voters and their caregivers. Some tips included in the guide were speaking clearly, timing your discussion of voting for a time of day where the person might be more alert, and making sure you understand the person and their wishes by asking them to repeat themselves when needed. We'll include the document in our show notes. It covers a lot of different scenarios you might run into helping someone to vote. [00:12:48] Speaker A: My name is John Moore, and I currently live in a continuing care retirement community in Greenwood, South Carolina. [00:12:56] Speaker B: John Moore ran into one of these scenarios while taking his wife, who has dementia, to vote in 2020. [00:13:02] Speaker A: We went in to vote and they give you the cards and they talk Southern real fast. And I knew she was confused. And so I said to the person there, I said, may I help her? And I got the answer was no. And I said, she doesn't understand, and she's asking me questions about the procedures. And he said that she needed to ask somebody who worked there the procedures that I wasn't allowed to help her. I was like, wow, you know, this sucks, basically. So she got through it. But I know in this coming election coming up, she's not going to get through it. I mean, she knows already who she's going to vote for, but it's a matter of doing the paperwork, putting it in the slot, and knowing exactly where to put the mark. [00:13:51] Speaker B: He said after reading over the Penn Memory center and the American Bar Association's guide recently, he realizes now that the person at the polling location was incorrect and he actually did have the right to help his wife. [00:14:04] Speaker A: I wish I would have had that. I'd have gone, look, read this. Do you know the rules? I mean, who, how was I to know? [00:14:14] Speaker B: But Moore said he thinks voting will be easier this November because the polling location will be set up in the retirement facility where he and his wife live. This is another way, Dr. Carlos said the federal government and local governments can further assist older adults in voting by making polling locations more accessible and ballots as legible as possible. [00:14:35] Speaker E: So that performative capacity is dependent upon what the structures and systems we set up to allow someone to even begin to express the desire to vote and then exercise that desire by choosing between two people. [00:14:48] Speaker B: Dr. Karlowish also co authored a study published in Election Law Journal which looked at different approaches to voting in long term care facilities. [00:14:57] Speaker E: We did a study in Vermont and this was in collaboration with the Secretary of State of Vermont, Deb Markowitz. And we did a randomized trial in residential long term care facilities in Vermont where we randomized long term care facilities to either do voting the way they did it or to have elections officials bring the ballot. And what we found from that study was an overwhelming clear finding that the staff and the elections officials really valued going to the facilities and the residents by their report, also valued it. The staff especially told us in very plain statements, you know, I find it very awkward to do voting and when they need help, I really struggle with how much to help them and what kind of help was appropriate. And they just found themselves liberated of all those burdens. When the elections officials came and helped the residents vote and they all said that the residents really felt empowered, they felt respected once again as Americans to see the elections officials coming there to help them vote and bring the ballot to them. [00:16:04] Speaker B: He said. This is actually the norm in places like Australia due to its mandatory voting laws. [00:16:10] Speaker E: I was there during one of the federal elections in Australia and I witnessed voting in residential long term care setting. And they bring the elections officials to the facility, they set up the polling booth, they let all the residents come there and vote and then they go to each resident's room who can't go to the polling area and bring the ballot to them to help them fill it out. [00:16:34] Speaker A: It should be easier this time because the voting station is right here and we don't even have to stand in line. We just go by and say okay, too many people and go back later. But after reading that article that he put out, I was not, I don't believe we were handed drop. [00:16:57] Speaker C: So John Moore had reached out to the Penn Memory center after we had we had shared that guide again, I don't know, maybe about a month ago or so to our email list. And I'm so thankful that he did and that he was willing to share his story here with the podcast because TJ was correct. People who work in polling booths are trained, but not everybody knows the rules as well as they should have from the training. And so it is important for people to be informed. So I think it'd be helpful to just run through a couple of the key lessons from this. There were great stories in there, but I want to make sure that were really clear to listeners about what the takeaways are. And so one. Someone living with dementia has the right to vote in the United States. 2 Voting is a performative act and if you are able to perform that act, then you maintain that right to vote. There is no measure of one's capacity. There's no test of cognition in the United States to be able to keep your right to vote and that you can assist someone vote either with a mail in ballot or in person voting. But if you plan to carry their ballot for them, then you need to file a form. A voter cannot delegate their vote to another person. They can say I would like you to mark down for so and so, but you can't tell someone else, you know me, just put down who you think and the person helping you cannot influence your vote. Does that feel like a fair summary of our key expectations from this? [00:18:34] Speaker D: I think that that is the most important information I think that I got out of this even because just talking to Dr. Karl, wish I wasn't aware of these ideas about capacity and performative capacity I thought was a really interesting and I thought intuitive way to think about it and I thought that that made a lot of sense. If you're able to vote, then you can vote. [00:18:56] Speaker C: Yeah, it's, it when you break it down to basic ethics, I totally agree with Dr. Karlowish's perspective here, but it is something that the more you talk about it, the more you understand people's struggle with this. Someone could live their entire life voting straight party. And, you know, hypothetically, we'll say somebody has voted only for Democrats for 45 years or whatnot. And then when you're assisting them with their ballot, knowing that they have only ever voted for Democrats, suddenly they're saying, I'll vote for so and so. And that person happens to be a Republican, you know, as a caregiver who knows that person well, you can imagine sort of the internal struggle of, well, no, no, no, like, that person's a Republican. You didn't mean to do this, yada yada, or, and I don't mean to make it partisan. You can imagine that the opposite scenario, too. Someone has only ever voted for Republicans, and they're naming the Democrat in one scenario. And you as a caregiver can try to justify in your head, well, I know this person. They didn't mean that. But the truth is, we don't do that to others. We don't ask people to explain their vote. It's private information. When you go into the booth by yourself or when you fill out your ballot, you're not required to tell anybody who you voted for or why you made the selection that you did. And so that same freedom should apply to all eligible voters, regardless of their cognition. But you can imagine the struggle there given one of those, those two scenarios. [00:20:31] Speaker D: Yeah, and Dr. Carlos was talking about that a little bit where, you know, it might be harder than, than it seems, or it sounds like, to watch somebody fill out the candidate that you wouldn't vote for and just let them do it, I think you. Your instinct is to go, oh, no, don't do that. But I think at the end of the day, it's. It's their right, it's their decision. You really just have to let them do what they want to do. I thought TJ DeLuca gave a lot of really great information about voting. And one thing that he mentioned to me that didn't make it into the episode is that if you have any questions about your rights, especially if you have a disability or you have dementia and you live in Pennsylvania, then there is a really helpful number that you can call for the disability rights hotline in Pennsylvania if you have any questions. And that number is 1-800-692-7443. And so if you have any questions about what you're able to do how you can help somebody where your polling location is and your general rights, you can call that number. You can also go to disabilityrightspa.org for any information about that as well. And then also something I didn't realize that he mentioned was that if you have any questions at a polling location, there's a person there that basically has all of the rules, and you can always just ask that person. [00:22:02] Speaker C: Yeah. So at every polling location, there's a judge of elections, there's a minority inspector, a majority inspector, and a clerk for every voting precinct. So sometimes a voting location may actually have more than one precinct in it as well. And the judge of elections, I like TJ's term, as that's sort of the referee. That person should know the rules better than anybody else. But importantly, also is connected to voter services across the county. And so if anything is up for debate, you can take it to the judge of elections, or they call it the Joe sometimes. And if you want to elevate it anymore, you can ask the judge of elections to reach out to the county and voter services. And you had mentioned a couple of service lines in the state of Pennsylvania, which is great, but every state, and I believe every county will have their own dedicated voter services line. So if you have any questions, you can find that voter services group in your county. And if you are at the polling booth on election day, you can connect either with the judge of elections or ask the judge of elections to connect with voter services as well. [00:23:18] Speaker D: I know that when I get into a polling location, you're. You've been standing online for a while and you get in there and I. I get overwhelmed, honestly. But I get overwhelmed pretty easily by things like that, where it's like, oh, where do I go? I don't want to mess this up. I don't want people to get mad at me. You know, I don't want people to think that I'm like, cheating or something or looking at other. You know, I don't know. I overthink it. And just knowing that there's somebody there that you can always just be like. [00:23:45] Speaker B: What do I do? [00:23:46] Speaker D: I don't really know what I'm doing. And their whole job is just to know the rules and tell you what to do is great. And you should definitely use that. And if you're someone like me who can get overwhelmed easily, it's probably a good idea to just look it up before you go or to give those lines a call and just make sure that you have all the information before you head out. [00:24:08] Speaker C: And I appreciated the guide with the American Bar association and we'll link to that in the show notes. Of course it address not only the legal requirements and sort of the ethical expectations, but some practical advice about considering the time of day that you will help the person cast their ballot. You hear the term sundowning a lot in caring with persons living with dementia. And later on in the day people may have sort of a harder time with focus and attention comprehension and so on. And if that's the case, you want to help somebody plan out their ballot, maybe schedule it for 10 o'clock in the morning after somebody has had breakfast and they're more alert, something like that. I thought that was that was a really helpful bit of advice in in the document. [00:24:54] Speaker D: And will you be working in the polls this year? [00:24:57] Speaker C: I will. I'm still waiting to find out where I will be. I I often volunteer myself as a floater, so my my own precinct is fully staffed, which is great to see. I would love to work the polling location that I can see out my front window right now, but I'm thrilled that it's fully staffed. So somewhere in my county I'll be working on election day. Are you registered to vote and do you have a voting plan? [00:25:22] Speaker D: I am registered to vote and I do have a voting plan. I just moved to Pennsylvania, so it's really exciting, honestly, to be in Pennsylvania, coming from New York, because it just feels so important. It's always important no matter where you are. But I'm feeling even more excited this year about it, so that's been great. [00:25:42] Speaker C: Yeah, the local races are always important and we'll see them here as well. But yeah, Pennsylvania is the bell of the ball, it feels like all over. We have a permanent spot on cable news, for better or worse, and the. [00:25:58] Speaker D: Ads are getting crazy. So I'm definitely happy for that to be over in the next few months. [00:26:03] Speaker C: Yeah, don't get me wrong, as much as I love political engagement, I would pay 20% more for cable television but did not allow political advertising. We'll we'll be through that soon one way or another. [00:26:19] Speaker D: Thanks for listening to this episode of the Age of Aging. The Age of Aging podcast is supported by the Penn Memory center, the University of Pennsylvania Alzheimer's Disease Research center, the Institute on Aging, and the Penn FTD Center. [00:26:33] Speaker C: Contributors include myself and Jake Johnson, as well as Nicolette Calcovecchia, Dalia El Said, Marie Ngineri, Jason Karlowish, Emily Lavargent, Meg McCarthy and Megan Sharp. Special thanks to TJ DeLuca, Jason Karlowish and John Moore for their interviews. [00:26:52] Speaker D: More information on the stories you heard today can be found in our show Notes and on our website, penmemorycenter. [00:26:58] Speaker E: Org.