You are currently viewing FAQs about Dementia and Voting with Jennifer Mathis

FAQs about Dementia and Voting with Jennifer Mathis

Episode #30October 20, 2020

A few weeks ago, I received an email from a listener:

“Hello, Dr. Regina,

“I work in an assisted living facility. As the election approaches, family members of residents on memory care units have asked to have residents vote. Residents on this unit are here because they’re unable to make informed decisions and don’t have a grasp on reality. Also, the particular resident shows no interest in wanting to vote. It’s the family that essentially wants to cast a vote for the individual, which seems unethical to me. I’ve tried reaching out to professional groups for some guidance to no avail.

Do you have any thoughts regarding this topic?”

Older adults tend to vote more often and more consistently than other age groups. According to a US News Report, in 2018, 64% of adults age 65 and older voted in the November 2018 election, the best turnout of any age group. With this said, 10% of older adults, however, will experience a cognitive disorder, including a dementia disorder. It makes sense that the listener was asking the questions:

Can people with dementia vote?

Can people with dementia needing 24/7 care and supervision vote?

Since this is such an important topic affecting people’s rights, I invited a national expert, Jennifer Mathis, Director of Policy and Legal Advocacy of the Judge David L. Bazelon Center for Mental Health Law, on the podcast to answer all of our FAQs about dementia and voting.

Here’s a sneak peek inside my interview with Jennifer Mathis:

  • [07:41] There’s a long history of voter suppression in Long Term Care Communities. Learn about this history and what we can do about it.
  • [11:24] Jennifer discusses the history of voting fraud in the form of throwing out ballots of voters in the hospital.
  • [15:54] Jennifer answers the question: “If my wife always voted Republican for all of her life. And I know that she would vote Republican now, can I mark Republican on the ballot for her?”
  • [18:41] Jennifer describes the standards for voting capacity and reminds us that we have to apply the same standards to everyone.
  • [24:38] Practically speaking: how do you help someone with dementia vote? We discuss this here.
  • [28:22] What if the person with dementia has a legal guardian appointed by a court, can this person vote? Can the guardian vote for them?
  • [39:19] Clinicians and long term care staff beware! You may think you know how to determine voting capacity, but chances are, you’re not using the right set of standards. Mickey Mouse may not be an unacceptable candidate after all.
  • [51:59] There are many resources to guide families and long term care communities in helping people with dementia to vote. Learn about them here.


Jennifer Mathis is Director of Policy and Legal Advocacy at the Bazelon Center for Mental Health Law. The Center is a national nonprofit legal advocacy organization that represents individuals with mental disabilities. Jennifer uses litigation, policy advocacy, technical assistance and training to advance equal opportunity for individuals with mental disabilities in all areas of life, including health care, employment, voting, education, housing, community living, and family and parental rights. She has litigated voting rights cases and successfully advocated for changes in state voting laws.


FAQs About Dementia and Voting

With older adults being more likely to vote than any other age group and dementia affecting older adults more than any other age group, questions about dementia and voting naturally arise! Can people with dementia vote?

Like most things related to voting, there’s concern and controversy. Everything from personal opinions from caregivers, like: “This is SO wrong!!! My mom doesn’t know who I am or who other family members are and you want her to vote for someone she doesn’t know?” Or, psychiatrists in 2005, who attempted to create a Doe Voting Capacity Standard, which required more reasoning and rationale than the average voter would be required to have to demonstrate, which can lead to voter suppression.

With so many questions and concerns it helps to have a set of guidelines and standards.

The American Bar Association’s Commission on Law and Aging & the Penn Memory Center recently put together a guide on helping people with cognitive impairment to vote. They explain that a medical diagnosis, like Alzheimer’s Disease does not disqualify someone from voting, rather, that we must ask if people wish to vote and if they do, we must assist them. They explain:

“Capacity to vote is much like the capacity to ride a bicycle, which can be determined accurately only by allowing the individual to mount a bike and start pedaling. If capacity is lacking, the task just won’t be completed.”

How is a person’s capacity to vote determined?

Voting capacity is determined by each state, and while some states have laws forbidding people who have been assigned a legal guardian to vote, many states do not impose voting capacity standards. Federal law, however, entitles voters with disabilities to vote and to receive assistance with voting if and when needed.

Who can help a person with dementia vote?

A poll worker, friend, family member, caregiver, assisted living facility worker, or almost anyone else save an employer or union officer (if the voter is a member of a union).

What can you do to help?

If you are assisting a person with dementia with voting, knowing these communication skills will increase the chances of having a successful voting experience:

  1. Listen carefully to what the person is saying (verbally & non-verbally). Depending on the stage of dementia, some conversations may take longer than others. Really make an effort to listen and be patient.
  2. Speak clearly & respectfully. Use your regular tone of voice. Studies show, when we use “baby talk” or “elder speak”, the person with dementia behaves differently. Speak clearly and slowly. Also, consider shortening your sentences. It’s harder to process longer sentences. The clearer and simpler you’re questions, the easier they’ll be to understand.
  3. Get the person’s attention BEFORE you communicate with them. Eye contact and gentle touch can help to ground and orient a person with dementia. Getting the person’s attention before asking them to vote will help them to demonstrate their true ability to vote.
  4. Have the conversation about voting during the person’s BEST time of day. People with dementia times of the day when they are at their best, just like you and I do. Try to have a conversation about voting during their most optimal time of day.
  5. Make sure you understand what the person is saying. If you don’t understand, ask them to point or gesture.

Do’s and Don’ts of Dementia and Voting

The Bazelon Center for Mental Health Law and the National Disability Rights Network offer a guide when it comes to assisting people with diminished capacity to vote. They explain that voters may have assistance if needed. For example:

  • Read the ballot in a way that the voter can understand
  • Never express your opinion
  • You may not withhold information or give inaccurate information
  • Don’t pressure the person to vote on every item. If the person tires or wishes not to vote on all of the items on the ballot that is fine. Everyone has the right to choose whether or not they vote on each contest.

A common question that arises for caregivers is: “if my spouse has voted Republican for the past 50 years, and I’m confident that she would vote Republican now, can I select this candidate for her?” The answer is no. However, if the wife was given an option and verbally (or non-verbally with a gesture) selected the Republican candidate, then the helper can assist in marking the ballot. Make sense?

To learn more about voting and if you need assistance, you can call Election Protection at 1-866-OUR-VOTE (1-866-687-8683)

Bottom line: Many people with dementia can vote and are entitled to assistance.

Dr. Regina Koepp 0:00
The leaves are changing the air is crisp. And people are heading to the polls. Get ready cuz it's voting season. But can everyone vote? I mean, can people with dementia vote? Yes. Can people living on memory care units though? Why, yes. And we're going to explore all of that. In today's episode, I see you shaking your head saying no way can people living on memory care vote. And I had that initial reaction too, but I was wrong. In this episode I bring an expert on to fill us in on voting rights and dementia. Let's get started.

Dr. Regina Koepp 0:48
I'm Dr. Regina Koepp. I'm a board certified clinical psychologist and I specialize with older adults and family. I created the psychology of aging podcast to answer some of the most common questions I get about aging, questions about mental health and wellness, changes in the brain like with dementia, relationships and sex, caregiving, and even end of life. Like I say in my therapy group, no topic is off topic, we just have to have a healthy way of talking about it. So if you're an older adult, or caring for one, you're in the right place. Let's get started.

Dr. Regina Koepp 1:29
Did you know that by 2034, there will be more older adults 65 and older than children under the age of 18. Whoa 20% of older adults will experience a mental health condition. It is imperative that mental health medical and senior care systems know how to effectively address the mental health care needs and sexual health care needs of older adults. For more than 15 years, I've been providing mental health care to older adults and their families. And I'm delighted to share that I am now offering consultation and training to mental health and senior care communities. Best practices call for a multidisciplinary team approach when it comes to caring for older adults and providing treatment to older adults. So I've partnered with my colleague, Dr. Lisa Frank, who is a Board Certified psychiatrist specializing in older adults. Together we consult with medical, mental health and senior care communities in three ways. We provide clinical consultation, if you're struggling with a case, we help you develop programs just for older adults, and we provide staff training. So you can learn more by visiting my website Now, for this exciting episode on voting. A couple of weeks ago, I got an email from a listener. And here's what the email said. "Hello, Dr. Regina, I hope you're well. As we've discussed previously, I work in an assisted living facility. As the election approaches, family members of residents on memory care units have asked to have residents vote. Residents on this unit are here because they're unable to make informed decisions and don't have a grasp on reality. Also, the particular resident shows no interest in wanting to vote. It's the family that essentially wants to cast a vote for the individual, which seems unethical to me. I've tried reaching out to professional groups for some guidance to no avail. Do you have any thoughts regarding this topic?" This is such an important question. And I did not know the answer. I actually thought it would simply be if I could determine if the person had capacity to vote or not, then that would be that. But I didn't just stop there with that thought I actually looked a little bit deeper and discover that it's not so simple. To help answer this question, I started digging. I started digging for resources on voting and cognitive impairment voting and dementia voting with diminished capacity to learn what some of the guidelines were. And I came across a great article and an incredible woman, Miss Jennifer Mathis of the Bazelon Center for Mental Health Law. So actually how I ran across her is that I found an article that she wrote all about voting rights for folks with dementia and diminished capacity. I'll link to that in the show notes. But I reached out to Jennifer and I invited her on the podcast today. Let me tell you a little bit about Jennifer Mathis. So, Jennifer Mathis is Director of Policy and legal advocacy at the Bazelon Center for Mental Health Law. The center is a national nonprofit legal advocacy organization that represents individuals with mental disabilities. Jennifer uses litigation, policy, advocacy, technical assistance and training to advance equal opportunity for individuals with mental disabilities in all areas of life, including healthcare, employment, voting, education, housing, community living and family and parental rights. She's litigated voting rights cases and successfully advocated for changes in state voting laws. I am so excited to have her here today to talk with us about, "Yes, people with dementia can vote," and a little bit about the law. She also... it's basically an ask every question you can to learn about the law related to voting and diminished capacity. Let's get started. Jennifer, thank you so much for agreeing to be on the podcast today to talk with us about voting and cognitive impairment and what some of the rules are. how we can be supportive of folks, and then to kind of work through some dilemmas.

Jennifer Mathis 5:55
Sure. Happy to be here.

Dr. Regina Koepp 5:56
Can you share a little bit about who you are and what you do?

Jennifer Mathis 6:00
Sure, I work at a group called the Bazelon Center for Mental Health Law. I am the Director of Policy and legal advocacy there. And I've been there since 1999. And the Bazelon Center used to be called the Mental Health Law Project we're a policy and legal advocacy group, we do a lot of litigation around the country. We do policy advocacy, mostly at the federal level with congress and with administrative agencies. And we represent people with mental disabilities, primarily people with psychiatric disabilities. Also, sometimes people with intellectual disabilities. And we really do a very broad range of things. We represent people in all kinds of areas, I would say that we are about equal opportunity for people with mental disabilities and ensuring that they can have the same kinds of lives as everybody else. So, we work in community living and health care, employment, education, family parental rights. I'm sure I missed some - housing and voting.

Dr. Regina Koepp 7:13
And voting. Yeah. Well, thank you for the work that you do. My family is touched by significant mental illness, and I want my family members to have the same rights and access as I do. And so I really appreciate and admire the work you all do to make sure that people have equitable access, and hopefully destigmatize, once they do get there, how people treat them.

Jennifer Mathis 7:39

Dr. Regina Koepp 7:41
So let's talk a little bit about voting then. And there's a history of voter suppression in long term care communities. And that might, I'm sure, there are some challenges now with COVID because of restrictions in long term care communities. Are you noticing that now? or?

Jennifer Mathis 7:56
Yeah, so I mean, I think it's interesting. Um, and you're right, there is a history of voter suppression. And I think that really stems from the fact that, you know, people in long term care facilities have some people doing so many things for them and controlling so many aspects of their lives. You know, in many cases, whether they like it or not. I think that what tends to happen is that the staff of long term care facilities is so used to making decisions for people with disabilities that I think it doesn't always dawn on people, I'm not sure it's all nefarious, but I think it just doesn't dawn on people that it's not their decision to make, you know, who they think is capable of voting or not. And so I think that what often happens is that people in long term care facilities, and up, just sort of assuming that they can decide who should get help to fill out a ballot or to register, who they think has the capacity to vote. And obviously, it's not their decision to make, you know, only a court can make that decision. But in any event, so that is, I think, some explanation of sort of why that history has been there. But, given the current situation is somewhat unprecedented, and we now have people using mail in or absentee ballots on a much, much broader scale than ever before. I think that has ramifications for people in long term care facilities. You know, in some ways, I think that it may make it easier for people to vote and in some ways, it may make it harder, it's a little bit hard to know exactly how this is going to play out for everybody in long term care facilities. But one of the big problems that people have had in long term care facilities is, you know, just not getting help to vote not getting help to register, not getting help to vote. Staff often see it as a burden to help people get to the polls, even though I would say that's their obligation that they have to make reasonable modifications to their usual policies under the ADA, to help people do all types of things, you know, in their daily life, including voting, and people don't leave their voting rights at the door. And, you know, that is something that people should get help with. And I think with mail in ballots now that you'll actually have people, in many more cases voting by mail, it may be less of a burden for long term care facilities to be going and helping people to vote if they don't have to help people get to the polls as often. On the other hand, they may want people to all vote by mail, and some people may want to go to the polls, for a lot of good reasons. And so, you know, maybe harder for those people if it's less of an accepted practice now, to help people to get to the polls. I think the other thing about mail in or absentee balloting is there's so much... I think there's always been a stigma or concern about fraud with absentee balloting and particularly in long term care facilities. And I don't think that there is actually a history of fraud with absentee ballots. I think the evidence doesn't show that but I think that facilities may be more reluctant to do that, in some cases, because of a concern about, you know, fraud. It may be that election officials are more reluctant to count ballots from people in long term care facilities, I think that would be illegal. But that has happened. There was once a case where election officials tossed out ballots from people in a state psychiatric facility, thinking that you know, that presumptively people were not capable of voting if they were in a state psychiatric facility. And there was a case about that, where that was challenged. So you know, it's a little bit unclear how exactly things will play out this year, rather than, you know, in contrast to past years. But overall, my suspicion is that it will actually be a little bit easier for people to be voting, if they are more often voting by mail in ballots, and there will be fewer issues raised by facilities about helping people vote, there is, you know, to some extent, maybe less scrutiny, though, if people aren't going to the polls, you know, they have to trust I think, in some way staff folks are helping them cast a ballot, that it really is getting mailed. So, that's a concern as well.

Dr. Regina Koepp 13:21
Yes, you know, I know Long Term Care communities right now are also really heavily hit with COVID. And there are staffing shortages, and I want to be mindful to, to not vilify long term care, also, you know, I can appreciate that the staff working in long term care are working longer hours, and doing harder work than ever before, with less appreciation for the work that they're doing. And sometimes have to prioritize what needs to get met. And so I can imagine if somebody needs medicine and bathing, that's going to take priority over registering to vote. And so I want to just also, kind of appreciate that long term care staff are working very hard. And that this is... and I think overall do want the best for the folks living in their communities. And then with COVID on top, and then all the consequences too, if people do go to the polling, if residents go out to the polling places and then maybe have to quarantine and what...

Jennifer Mathis 14:35
I'm not suggesting there's anything malicious on the part of long term care facility staff, it's just the, you know, these are the realities of institutional living. And I mean, that is why I think in many cases, certainly in the disability community, a big priority is to you know, avoid institutional living to the extent they can because it's not the people who worked for institutions aren't necessarily bad people, it's just that, you know, those realities mean those impact people's lives in a very dramatic way.

Dr. Regina Koepp 15:12
Yes, you're in a system and the system is bigger than you and will have its own flow and and it might not flow in the direction you want it as a resident and then the statements you made earlier about staff and family making decisions for residents and important necessary decisions. And then it can be hard to tune in and finally draw the line of boundary crossings or boundary violations when it comes to people's rights. And that's hard because everybody's mixed together, making decisions, some decisions are merited, and some the person has rights around. Now moving into dementia disorders, so one of the listener recently reached out to me, she's a social worker in a long term care community. She had concerns that there was a resident living in memory care, which was a locked Memory Care Unit, the resident was indifferent around voting, the family was insistent around voting for the resident. And so that created the question, how do we determine capacity for this resident to vote? But can you talk a little bit about voting and dementia and cognitive impairment and how is capacity to vote even determined?

Jennifer Mathis 16:30
Sure, and I mean, I think one of the keys here is that, you know, there's often, I think, an assumption that if somebody may not understand what the voting process is anymore, they may not understand, you know, the issues on the ballot, that that means, you know, we can't let them vote or that means that a family member shouldn't be helping them. Because we're concerned that what's really going to happen is that the family member is essentially going to vote for that person. And I think that is a concern that many people have raised, and that raises kind of voter fraud issues. And I guess, my reaction to that is, you don't deal with issues of the family voting for somebody by taking away that person's right to vote, if you're concerned, you have to educate the family, that it has to be the person's choice, it can't be your choice, you can help the person to vote, you can help the person cast a ballot. Federal law allows that and requires that if a person wants help, but you know, it has to be that person's choice. And even if you are sure that you know what that person's choice would be, if they could articulate it. Even if you said, you know, my wife always voted Republican for all of her life. And I know that she would vote republican - now that you can't do because you're really you know, if the wife is not articulating a choice, not communicating in any way, a choice to vote that way. You know, that is not permissible. But if the person does, or can communicate a choice, then yes, that person should get the opportunity to vote and can get help to do that. And I think that where we draw the line, I think about voting capacity seems to be different in different states. And a little bit all over the map. And you know, before you take away someone's vote, I think the presumption is always that somebody has the capacity to vote. And in many states, there is no voter capacity requirement. And so you can't just decide that somebody can't vote because they don't have the capacity. In most cases, frankly, it doesn't come up that somebody doesn't have the capacity because typically, if somebody really is at the point where they don't understand, you know, the basics of what voting means anymore, they're not usually asking to vote. And so it's in some ways, sort of a self selecting process. But I think that, you know, where we draw the line for people with disabilities or people under guardianship should be where we draw the line for all voters. And so I think what tends to happen inappropriately is that while we don't expect a whole lot from voters generally about showing why they should vote or that they have the capability of voting, we don't expect your average voter to demonstrate any rationality in their choices to demonstrate that they can make specific choices to demonstrate anything about why they want to make a certain choice. We let people vote, in many cases, because they like the way somebody looks or the because they like their tie, or they like their hair or, you know, any reason whether it's rational or not, we don't scrutinize the reasons behind voters ability to to make a choice. Generally, we don't scrutinize the reasons for their making a choice. We don't scrutinize the rationality of their decision making and voting. And so we shouldn't impose a higher burden or a higher standard on people with disabilities. If we want to make sure that we think that people are exercising a certain amount of rationality in voting, then we need to apply that standard to all voters, we can't single out people in long term care facilities, or people in guardianship proceedings or people with disabilities, and say, only you have to meet these standards or, you know, demonstrate to me that you understand what's going on. And so that is the reason why you have a number of states not having a voter capacity standard, because there's a recognition that we really don't do that in our voting systems, generally, we don't demand rationality of voters generally. And so therefore, we shouldn't do it for, you know, a particular set of people in a different way than we do it for all other voters. If you do want to have standards, you know, you can, but you've got to apply them to everybody. The other way to deal with that, I think, is try to have a standard that really approximates what we do for all other voters. So there are a number of states that now have adopted a standard like this for voter capacity. And it's something that was recommended by the American Bar Association. And my organization was involved in that. And what it says is, if you're under guardianship, if a state chooses to have a voter competent standard, a voter capacity standard, what they should do is say that if someone's under guardianship, that person can only lose the right to vote based on capacity, if the person can't, with or without accommodations communicate a choice to participate in the voting process. And so that's really what we asked of anybody else? You know, are they basically communicating a desire to vote? And we don't scrutinize beyond that we don't scrutinize how well we think they understand the voting process, or how well we think they can make choices or how rational their choices are. And so that's why we, you know, should have a standard like that. It's basically a policy of saying, we're going to treat you like we treat all other voters. And if we wanted to scrutinize the rationality more, then fine, you can do that. But you've got to do it for everybody.

Dr. Regina Koepp 23:33
Mm hmm. I appreciate that distinction. I think it really helps to clarify. You said a lot of important things. One, you said, if the person is communicating a desire to vote, then we are bound by ethics to assist them in voting. If a person is not communicating a desire and does not have a sense of space and time they'll likely self select or opt out just by omission. Now, what is... living in long term care, folks can lose a sense of space and time, especially during COVID because they're not leaving the community. And now, I imagine but educate me, is it fair for staff and family to say this, "if there's an election coming up, these are the candidates" and then pose, "Would you like to vote to bring information into the community if the community is missing out because of COVID and everybody's on lockdown?"

Jennifer Mathis 24:38
Yeah, I think that is good and fair that you know, people should raise it. I think people should, generally inquire, certainly and give people the opportunity to express a desire whether to vote and put a piece of paper in front of somebody and you know, someone who can write, obviously, if a person is unable to write, you can assist that person again, you can't vote for them, you can't substitute your choices, but they have to be able to communicate, you know those choices to you. But you can certainly, elicit from that person do they want to vote or not. And if they do, then help them vote, if you put a piece of paper in front of someone who can write and they sit there and they can't do anything, and there isn't really a way to help them that is meaningful, then yeah, that person is not going to vote. But you know, if the person can communicate in other ways, and some people do communicate in unusual ways, and some people might communicate by eye blinking, and you know, yes, you have to make sure it's a very individualized determination, I think about sort of somebody's communication and what that means, but a family members understand and knows that the person is communicating a particular thing to them, I think that's, you know, that's fair and appropriate, it has to be legitimate. But if that person can communicate, then the person should be allowed to do that, and shouldn't be denied the right to vote just because it's a different way of communicating than most of us use.

Dr. Regina Koepp 26:22
Yeah, I appreciate that, even in my own practice working in medical systems, if I needed a release of information, so if I needed to ask my client for a release of information to the long term care community, if they were post stroke, and maybe could not write or living with ALS, and could not write, as long as I could determine if the person has capacity to make that decision, which, professionally, I'm able to do that, then I would kind of document the person or gave me whatever kind of permission, clear permission to release information or gather information from the long term care community and vice versa. So I appreciate that. There are all sorts of styles of communication, especially in the disability and diminished capacity world. So folks with dementia language, especially with Alzheimer's disease, or vascular dementia, the person is poststroke language might be a barrier. But there are other ways of communicating. And it takes time and patience.

Jennifer Mathis 27:28
Yes. And a lot of times, people don't have one or the other.

Dr. Regina Koepp 27:33
Yes. And it takes a real, I think, humanistic desire to respect the humanity of the person that we're working with. And the best thing that helps with that in professional systems or long term care committees is time and patience, and the system has to also afford that to the staff that are working. And with staff shortages, that is really hard right now. What I wanted to follow up on was guardianship and voting rights. And in your article I read sometimes when people are in their guardianship hearings, if an advocate does not or the person undergoing the hearing, does not advocate for their voting rights that often gets folded into the guardians role. Is that right? or help me understand?

Jennifer Mathis 28:22
Yeah, well, in most states, with a voter competence requirement where someone might lose their right to vote, based on a finding that they aren't competent to vote, or in some states, it's simply based on a finding that you're under guardianship period. But increasingly, I think that the more common rule is that you might lose the right to vote if you're under guardianship, and a court finds that you specifically don't have the capacity to vote. So in most places, if that is the law, then what might happen in someone's guardianship proceeding is it gets raised, sometimes it gets raised because it's on a piece of paper, it's on a form, and there's a box that has to be checked. And that might prompt the court to ask the person questions to make that decision, or the person might have someone there to help the court, you know, figure out that decision. Sometimes the questions are a little random, and more... Well, sometimes they're really about the person's desire to vote. And sometimes they're about all kinds of questions about the election itself or the choices that are being made or they're about things like, "Do you know the mayor or do you know who the President is?" or things like that, but in any event, I think, you know, in some states it's really troubling because people automatically lose the right to vote. If it doesn't specifically get raised by the person, there isn't necessarily a process to trigger that. And then suddenly the person has lost the right to vote. And they may not even realize that that was an issue. And so yes, that has definitely happened in some states, and I think continues to happen in some states. More common is it does actually get raised. But yes, it depends on the state and the state's law. And in some states, the default is, you know that you keep the right to vote unless a court specifically finds that you lack the capacity to vote. In other states, the default seems to be or in practice is that you lose it unless a court specifically finds that you should keep it. And obviously, the latter is particularly troubling.

Dr. Regina Koepp 28:57
The other piece that you mentioned in your article is that of a person who is a ward of the state, or ward of whomever is assigned guardianship can petition the court for a right to vote. And I'm just reflecting on all of the people who have had a guardian assigned, how complicated it would be to appeal financially one?

Jennifer Mathis 31:32
Absolutely, technically. Well, we did a case once in Missouri, where we challenged a state law that said, if you're under guardianship, you can't vote period. And, in fact, made it a felony to vote if you were under guardianship. And, you know, this case, I think, illustrated many of the challenges that people have. So the state came in, as states have sometimes done, with these types of laws and said, "Oh, the law doesn't really mean what it says. And oh, you know, people don't automatically lose their right to vote just because they're under guardianship." You know, if they can make a showing that they have the capacity to vote, then they can keep their right to vote, or they can just go back later, and they can get the right to vote restored. And we had a number of public guardians, because Missouri has a very big public guardianship system, where there are, you know, guardians in different counties, and they are the guardians for sometimes thousands of people. And so there is obviously a lot of contact between guardian and each particular person. And some of those public guardians submitted declarations saying, I have never gone back to court to seek voting rights back for any of my wards. We had some of their wards, making statements saying, I would like to vote, I have lost my right to vote. I really want it back. I didn't know that I was going to lose it. I'm very interested in politics, I have a lot at stake. I really want to vote. In many cases, I think it was particularly striking. A lot of the people that we met in Missouri were members of a group called people first, which is an organization that represents... well is is actually buy in for people with intellectual disabilities. They have chapters in many places around the country. And they held their own elections to within people first, and many of the people we spoke to, they understood voting, they had run for office, they held office, they voted in people first elections. They went and did lobby days, and they went to their state legislators because they had so much at stake with their Medicaid benefits and what was going to happen to them and what was going to happen to their health care. And they couldn't vote because they had lost the right to vote because of this guardianship system. And I think it strained credulity to say that they didn't understand what it meant to vote. These were people who clearly understood what it meant to vote and what was at stake for them. But in any event, so they had lost the right to vote and they were under public guardians and the Public Guardian said it simply isn't feasible to be going back to court to seek People's voting rights and the only time that we would go back to court would be to seek restoration of the entirety of someone's rights. And really, that's the only time it would be worth it. And you're spending people's own funds. When you do this as the guardian, we're not spending our money, we're spending the person's money. And it's difficult and not feasible. And so we thought this is really pretty compelling. People have lost the right to vote really by default. And they're not getting it back. And the state was saying, :Oh, it's not a problem. It's not a problem, you know, people can just make a showing," and, you know, and then, in that case, the appeals court, the Eighth Circuit Court of Appeals said, "Oh, well, you know, the law seems like it's actually individualized because the state said it is and, you know, so people can make a showing," and, you know, if they couldn't, yes, that would be unconstitutional. And that would be a problem. But if they can make a showing that they should keep their right to vote or get it restored, later then, you know, that's okay. And, ironically, because the law says, period, if you're under guardianship, you can't vote. Two years after that federal court ruling, we discovered there was a state, a probate court that said to somebody, I can't restore your voting rights, because the law says I can't do it, the law's very clear. So, it was really heartbreaking to see that that's what happened. But you know, that's why it's really been, I think, challenging to get rid of these laws, because, you know, they're always reinterpreted and reinterpreted. And, you know, they're interpreted in different ways. And people don't realize they have rights often, and don't even call somebody to try to make an issue and challenge this, especially folks under guardianship because they're so used to not having very many rights to make their own decisions. And so that was a particularly heartbreaking case. But I think it illustrates why it has been difficult to get those rights back, because as you say, I mean, guardians don't often go back later on to get the right to vote back and it is expensive, and it does come out of the person's own funds.

Dr. Regina Koepp 37:40
And if you do have diminished capacity, filing an appeal to a probate court is very different than voting.

Jennifer Mathis 37:47

Dr. Regina Koepp 37:48
And so you might not be able to file an appeal to probate court or court to restore your voting rights, but you might be able to vote, there are two different tasks. And also, there's the emotional and psychological toll of being assigned to guardian. You know, there's all sorts of psychology research and Philip Zimbardo, you know, did the prison study where we take on the roles of the systems that we're in. And I have seen this in my clinical practice, that if you are assigned a guardian, then you start to adopt a dependency, because that's what the system is dictating, even if you might be very capable.

Jennifer Mathis 38:29
Right, exactly. That idea of learned helplessness, I think is very real, that people start to internalize this idea that they can't make any decisions for themselves, when in fact, that's not true. And, actually, it's so powerful to see that people who have felt like that, when you actually give them the opportunity to give them a little support, are really, really capable of making a lot of decisions that they didn't think they were.

Dr. Regina Koepp 38:54
And then also in the same system as the guardian, and this could be true for family guardians or state guardians. But taking on the role of, "Okay, well, then I have to decide everything and you can't decide anything." And that is also not true. And just the burden it puts on the guardian, too. It's, you know, both parties suffer when you set up this system.

Jennifer Mathis 39:19
And I think that it is also true, the clinical staff, I think, are also used to making a lot of medical decisions when someone's under guardianship, you know, depending on the nature of the guardianship, but they're used to making a lot of those decisions for the person. And I think voting is so different in terms of kind of the baseline of what we expect of voters, which isn't a lot as I was talking about before. And I think one of the things that was so interesting - when the ABA, the American Bar Association, had its summit, which led to the adoption of this ABA resolution that I talked about before - what voting standards are appropriate or not appropriate for voter capacity. There was a big summit in 2007. I think. And, you know, there were some clinicians there that were psychologists, psychiatrists, there were voting folks to election officials. And you had some of the clinical people who are so used to making capacity decisions and so many other contexts, devising complicated, you know, seven part tests for determining capacity and the elections, people looking at them like they were from Mars and saying, What are you talking about, you know, that's not what we expect of voters. And I think that, you know, you have to really understand voting too and how voting works. And really how the baseline of understanding and rationality that we expect of people is very different than in, say, medical decision making. And so, I think that has been some of the challenge too, is that, you know, you have clinical people who are so used to making all these decisions for somebody because they might not have the capacity to, and they might have a guardian, and, you know, have lost the right to make their own decisions about a lot of medical things. Also, just sort of imposing that what they're used to doing in the medical context, to, you know, make decisions about that person's ability to vote.

Dr. Regina Koepp 41:42
I so appreciate you saying this because I was vulnerable to that very thing of, "Oh, well, I am just going to apply my knowledge of capacity, wouldn't it just simply be if a licensed independent provider who has a specialty in determining capacity determines that person can vote or not? Is it that simple?" But it's not that simple. But what would you recommend? How can family members and long term care communities support a person with diminished capacities' right to vote, and then what to do if they don't know if the person can vote?

Jennifer Mathis 42:22
Right. I think that this idea of mobile polling is an interesting one, it has been implemented in a number of places around the country, I think, an increasing number of places. I don't know what's happening with the current environment, because I, you know, mobile polling involves people going to polling places, usually, it was a bipartisan team. So you would have somebody from each political party, I don't know that you'd have people representing the spectrum, I doubt you'd have people representing that entire spectrum of political parties, but the two major ones, and, you know, they would help people vote. They would talk to the person and assist that person in casting a ballot. They were trained to ensure that they weren't obviously voting for the person. And that's why also you have a bipartisan team, you don't have any influence or appearance of influence in a particular political direction. And, you know, it doesn't have to be mobile polling, it can be family members, it can be a service provider. But I think the important thing is really to educate people and ensure that people understand what it means to help someone to vote and not to vote for them, I think to have a broad view about how people communicate, and to not write people off because they communicate in different ways or unusually. But just to understand, you know, the, as I said before, it has to be a legitimate way to communicate, they have to really understand that that person is communicating a particular choice. But, again, it does depend, I think, to some extent on the law in the particular state, even though I think some of those laws may violate federal law, that's another issue. But if the law in your state doesn't have a voter capacity requirement, then, you know, people can't be denied the right to vote based on capacity. If they can't cast a ballot, they can't cast a ballot. If they can't communicate a choice, I mean, they can, but, you know, mobile polling is one way of kind of assisting people but people who really understand how to do it well, in the current environment with COVID. I am sure that you don't have mobile polling teams going into facilities the way that you did in the past, and, in fact, they're the federal regulations that Medicaid and Medicare folks have about sort of visitation and long term care facilities, you know, may preclude that anyway, you could do it outside as long as the weather is okay, which it should be. Again, it doesn't have to be mobile polling, it really can be family, friends, staff, anybody assisting I think, though the voting rights says if you want assistance that you're entitled to assistance from anyone except I think an employer or union in voting. But again, it really is a matter of making people understand that assisting somebody doesn't mean voting for them, or making a choice for them.

Dr. Regina Koepp 45:46
Yes, even if the precedent is that they would have voted for that party. American Bar Association recently put out a great guide on helping Long Term Care communities and families navigate the voting process for folks with dementia and diminished capacity. It's so helpful it gives these scenarios - it's free. I'll link to it in the show notes so that people can download it and use it as a guide if they're helping a loved one with diminished capacity vote or a resident with diminished capacity vote. Now what to do if it's unclear because the unclear spaces are where Long Term Care communities and families - they're in a dilemma? How far do we assist, and it's not quite clear that the person understands, but they're demonstrating a wish? So what do you recommend if it is unclear?

Jennifer Mathis 46:43
So yeah, and again, I think that really, for the most part, when people can't make a choice, that's apparent, right. And so you give somebody the opportunity to make a choice, right, and communicate a choice. And if you're sitting there with somebody, and you're asking them and they're non responsive, then you can't make up a response for them, and so they're not making a choice that is sort of, in some way, self selecting, if the person is making a choice, and you don't think that the person really understands that choice, I mean, you can treat somebody with a disability differently from everybody else, and just presume yourself that you don't think that there's a rational reason behind that choice, or even a basic reason behind that choice. Just as you know, we let people write in Mickey Mouse, and nobody comes to them and says, you know, that's not rational, you know, Mickey Mouse is not a real person running for office and this election, and therefore, you can't vote because I know that that's not a rational choice. So, you know, again, I think we really need to be vigilant about not treating somebody with dementia differently than we treat other voters because we know that they have difficulty understanding many things. And we know that they have difficulty making certain decisions, if they have not lost the right to vote, if they, you know, have not had it taken away by a court, then I think we shouldn't be making those determinations ourselves about their capacity to vote. Again, if we just need to know that we shouldn't be putting in a choice for them, we're guessing at what we think that they would choose or what they're trying to say when we're not really sure. So, I think if you're in a state where people can lose the right to vote, if they don't have the capacity to vote, then people can go to probate court and actually challenge somebody's right to vote. I personally don't think that that's great, because I think that the way that some of those laws are implemented violates federal law, because I do think that what happens then is they go before a probate judge, who is asking them questions that really don't get asked of other voters. And so I have a problem with that. But my concern is that just most people do and that we presume, less understanding. I've just seen it time after a time that we presume that people have less understanding than they really do. And it's just important to really remember the baseline of what we expect of other voters.

Dr. Regina Koepp 50:02
The other point that you've made in this episode is around guardianship. And even if the person... if you're in a state where a guardian hip does mean that the person does not have the right to vote any longer, the guardian cannot vote for the person who no longer has access to voting due to guardianship statutes. Is that the right way to say it?

Jennifer Mathis 50:28
Yeah. So the statute or the constitution. Usually it's the statute. Yeah, the law. That's right. And I want to, before I forget, actually also put in a plug for our voter guide, which is on our website. And it's actually, I think it should be, there's a new version, we have just updated it. And it should be on there. I think today, if not, today, being actually Friday. I don't know when the podcast is going to air, but...

Dr. Regina Koepp 50:57
It will be on Wednesday. So that would be great.

Jennifer Mathis 51:00
So yeah, it should be on there by then. And it will be an updated 2020. It's called vote - It's your right, I think, and it's designed for people with disabilities. For advocates, for lawyers, there's a longer version and a shorter version, the longer version has a lot of information, and has state by state laws on voter capacity. The shorter version is a plain language version. And then there's a bunch of charts that we have the absentee ballot laws in every state, the voter challenge laws in every state, the voter competence laws in every state. And we have a separate resource on there. That's basically for people under guardianship who have lost the right to vote and are interested in getting it back or interested in making sure they don't lose it in the guardianship proceedings in the first place. And we have template declarations and stuff that people can look at and use.

Dr. Regina Koepp 51:59
I will link to that in the show notes. I just pulled the older one out, I think from 2008. And it's comprehensive. So I'm looking forward to the updated 2020 version. Thank you. I'm just delighted to include that in the show notes and to promote it as well. Jennifer Mathis, thank you so much for being on the podcast today and sharing your wisdom and your insight, information about the law - just how complicated it is. And ultimately to being an advocate for folks with disabilities having rights, especially related to voting, which is our topic today. So thank you so much.

Jennifer Mathis 52:36
Thank you for having me on.

Dr. Regina Koepp 52:38
I hope that this episode answered some of the burning questions you have about dementia and voting. If you like this episode, be sure to subscribe and leave a review. Let me tell you why subscriptions and reviews actually help people to find this show. One of my goals with this show is to help promote mental health care and wellness for older adults, and also destigmatize Mental Health and Aging. So please subscribe and leave a review and help with this mission. As always, the information shared in this episode is for informational purposes only, and does not take the place of licensed medical or mental health care. I also want to give a very special thank you to our psychology of aging intern, Jhazzmyn Joiner. Thanks for all you do. All right. That's all. I'll see you next week, same time, same place. Lots of love to you, your family and all of the voters out there. Bye for now.

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