- AYESHA: Good morning, or good afternoon, depending on which time zone you're joining us from. Welcome to our briefing on "Marriage Equality for People with Disabilities: A Virtual Briefing on Personal Stories and Pending Legislation." So in terms of this briefing, we're really glad to have you joining us because there are a lot of bills that are introduced in the current Congress that address a very important issue, which is marriage equality for people with disabilities. But one of the important parts of our advocacy is that we are working with people who are disabled from around the country, and we are leading and we are telling our own stories. And so I am pleased to be able to, alongside The Arc, share some of the wonderful speakers that we have today. Our first speaker- INTERPRETER: Ayesha, sorry to interrupt, this is the interpreting team. I do just wanna double check that everyone can see us. I'm getting some chats here from some of the hosts and panelists. I do see the interpreter as well as captions on my screen. AYESHA: Okay, are there any questions about accessibility? INTERPRETER: Thank you, Ayesha. AYESHA: Thank you. Okay. The Q&A will be open if anyone has questions regarding any aspect of what we're discussing. If we're not able to reach your questions by the end of the program, please send us your email address along with your questions so that we can follow up with anyone who hasn't been able to get their question answered during our briefing. So, without further ado, I'd like to introduce Patrice Jetter, our first speaker. Patrice Jetter is a disabled artist who uses her creativity to move through a world that was not built with her in mind. She has been in and out of the state system, institutionalized and fought disability discrimination for 13 years to become a crossing guard in her hometown of Montclair, New Jersey. Patrice has won over a hundred medals in Special Olympics, has competed in a wide array of events, including ice skating, bowling, bocce ball, and horseback riding, to name a few. She has acted in a number of theater productions, including a performance at the United Nations. She's also a comic book artist, model train builder, and was the costume designer for the rock band, The Moldy Peaches. Patrice also developed and hosted "The Trish Show," a public access television kids show for many years and was featured in the Netflix series, "Worn Stories." Patrice is a national advocate for marriage equality for people with disabilities. And Patrice, please take it away. PATRICE: Hi, everybody. My name is Patrice Jetter, and I'm 60 years old. I started collecting SSI at the age of 13 under the advice of one of my special ed teachers at an IEP meeting. My mom also had a disability and she was getting SSI too. She was also my legal guardian and relied on our checks to pay the rent and bills. Mom also controlled all the money in our home, and I had no idea how much things cost because she took care of everything. I wanted to try to get a job, and she said, "No, if I go to work, they'll reduce my check, and we can't afford to lose anything." I was also in and out of state institutions where your whole SSI check goes to the state and you get a $50 personal needs allowance. I found out my sister helped mom with rent when I was away because SSI checks were only $385 back in the 1980s. I'm sorry, I lost my train of thought in mid-sentence. I'm sorry. When Social Security was gonna cut my Medicaid because I got benefits at work, I went to work at the sheltered workshop. In the workshop, you made very little pay so you wouldn't lose your check. But when they said little pay, I didn't know they meant like 13 cents for a week's pay. I cashed that at the liquor store because no way was I going to the bank with that. About a year and a half ago, to fast forward into the present, me and my best friend, Gary, had a commitment ceremony. It was the best day ever, and we honeymooned in Walt Disney World. We would love to be legally married. We would love to have that accessible ranch style home with a swimming pool out back, but we can't live together. If we moved into my place, we would have too much money, and it would cause me to lose my HUD voucher. If I were to move into his place, I would have to relinquish my HUD voucher and split the rent 50/50, meaning I'd have to pay over $600 a month causing me a hardship. I'm also not allowed to own a home because I can't have any assets. That includes 401ks and life insurance policies. SSI gives a married couple $600 a month, and you lose your Medicaid benefits. It's not worth losing what you need to survive. I think that the laws need to change so that people with disabilities have the same rights as other couples to become legally married. I don't understand why they feel in Congress that it's going to cost additional money to allow people with disabilities to get legally married if you are bringing into the relationship what you already have. Besides that, most couples without disabilities are always being told to keep their money separate and not in a joint account. So if you already have your money separate and things don't work out, then you should be able to leave with what you have. I just feel that the law needs to change so that people with disabilities can be legally married, like my friend Lori Long that I met, so I can start making her wedding decorations and my friends, the Weisses, that live in Illinois. And I would like to see them be able to have the same rights and privileges as everyone else and anyone else that wants to be legally married. So that's how I feel, and that's what I'm saying today. And thank you. AYESHA: Thanks, Patrice. We will now play a video showcasing stories from people around the country who are directly impacted by these unfair rules.

- Hi, I'm Janna. This is my fiance Josh. We're from southwest Georgia. In November, we will have been engaged four years, but we currently cannot make any wedding plans because I was former spina bifida. And if we were to get married, I'm gonna lose my insurance and my monthly Social Security check.

- Hi, I'm Jenna Foy.

- And I'm David Foy.

- We're from Ellensburg, Washington. His bosses would ask him, "Hey, do you want a raise?" And would have to kind of like turn it down, and say, "I can't do that, because if I do ask for a raise and I do get a raise, then it might go over the limit, and my wife would lose her benefits." If I didn't have that, I'd be dead.

- [AI Voice] I'm Kerry Shi, and I'm recently 40 years old. I'm from just outside of Boston, Massachusetts. I'm proudly autistic and an incomplete quadriplegic with Ehlers-Danlos syndrome. I want true marriage equality to finally pass. I have so much to give to this world, and we keep underestimating disabled folks. I'm tired of being used as inspiration, but I'm not even allowed to live in love. I'm inspirational to people because I go up ramps and can pop a wheelie. I'm not a virgin, and that shouldn't be a touchy subject for people. I'm proud that I fully lived and that I won't go silently with this country's rules for me. We know what we deserve, and it's so much more than any not-yet disabled person could ever understand.

- My name is Tina, and I am from Martinez, California. I'm not married. I'm still a girl. I really hope I could get married one day. I think I would be a good fit for them because I'm friendly, nice, and joyful. Because holy Christ is Jesus, I would be having a wedding in a dress.

- [Interviewer] Who would you want at your wedding?

- My mom.

- Yeah, I'm Matt. I'm 32. And I live in Puyallup, Washington. Being disabled, you know, is one of the most difficult lifestyles to ever live. I mean, it's not the end of the world, but it's definitely challenging. And there's nothing more magical than than love, right? I mean, you get that feeling, and people are having to choose between money and love, and really, really could put a huge burial and dent into the relationship. And not only the relationship, but just the overall mental health that just like the mental, like the emotion, you know?

- Hi, we're the Morrises.

- We're both disabled, and we live in Rock Hill, South Carolina. It's time for Congress to put its money where its mouth is and remove the marriage penalty for disabled people like us. It's time for marriage equality.

- I'm Wendy Pe-or-az-el. I live in Albany, New York.

- Hi, I'm Michael . Marriage equality is important to us because, number one, above all, I love my wife. We need help, we're stressing, fiending, begging to .

- If we didn't have the supports that we need, the critical supports that we need, we would not be sitting here. AYESHA: Can we give a quick round of applause for everyone who shared their stories? Thank you so much. Next, we are going to discuss the technical aspects of these marriage restrictions. Let's start off with some definitions to understand who we're talking about and what is at stake. Supplemental Security Income, otherwise known as SSI, is a Social Security Administration program for disabled people, blind people, and older adults who have little to no income in assets. Recipients younger than 65 must have a qualifying disability. SSI provides a modest monthly stipend, and in most states, SSI recipients receive Medicaid. As of December, 2023, there are approximately 7.4 million SSI recipients, most of whom have a qualifying disability. Next, Disabled Adult Child. The Disabled Adult Child, otherwise known as DAC, benefit, is a title two SSA disability benefit that provides a monthly stipend, access to Medicare, and a pathway to Medicaid. DAC is a secondary benefit based on the work record of a parent who is deceased, disabled, or retired. A person receiving DAC must be a dependent adult child, aged 18 or older, with a qualifying disability that began before age 22. Although DAC is technically a kind of child's insurance benefit, everyone who receives DAC is an adult. As of December, 2023, there are 1.1 million people receiving DAC benefits. And finally, what is a qualifying disability? A qualifying disability is a disability that the federal government determines prevent someone from maintaining substantial gainful employment. A person may be able to do some work, but the disability seriously limits their ability to maintain paid employment. SSA applies strict rules and standards for determining whether a person has a qualifying disability. Next slide. Okay, for the first penalty that we are going to discuss in more detailed is the Disabled Adult Child, or DAC, marriage penalty. DAC beneficiaries who marry will lose their DAC benefits. The only exceptions to the rule are if the spouse also receives DAC, SSDI, Social Security retirement benefits, which require to be at least 62, or a person receiving another secondary Title II benefit. It's also important to note that an SSI spouse is not within the exception. So if someone receives DAC and marries someone receiving SSI, their benefits would still be lost, and it's a lifetime bar on benefits. Next slide. Kate. KATE: Thanks, Ayesha. So I'm gonna run through the marriage penalties in the SSI program. So under the federal statute, two married SSI beneficiaries will get a joint stipend or monthly benefits and a joint asset limit that's 25% lower than those amounts for two unmarried SSI beneficiaries. So here we have the example for how the monthly benefit or stipend amounts compare. If you have two unmarried SSI beneficiaries, and they were roommates, not legally married, not in a romantic relationship, they would each get the federal benefit rate of $943 per month, or a total of $1,886. But if those two same SSI beneficiaries get married, then their total monthly benefit is gonna be $1,415. And the same with the asset limit. There's a $2,000 asset limit for a single unmarried SSI beneficiary. So if there were two unmarried SSI beneficiaries as roommates, they would each have the ability to save $2,000 and not lose their SSI. But two married SSI beneficiaries have an asset limit of $3,000. And I should say about those asset limits, we'll talk about them more later, but those asset limits have been the same $2,000 for an individual and $3,000 for a married couple since the 1980s. They've been stagnant for over 40 years. Let's go to the next slide. So even if two unmarried SSI beneficiaries are not legally married, SSA can decide that they are holding themselves out as married and they experience the same 25% reduction in the stipend and asset limit. So SSA can decide that two SSI beneficiaries who are living together are holding out to their friends and family and community as married, even if they're not legally married. And if SSA makes this finding of holding out, then the couple is subject to the same 25% reduction in their stipend level and asset limit. Next slide. If an SSI beneficiary is married to a spouse who is not receiving SSI, there is some complicated rules for spousal deeming of income and assets. So an SSI beneficiary who's either married or found to be holding out as married to a non-SSI spouse, a portion of the income of the non-SSI spouse is allocated to the SSI spouse, and that can reduce their monthly benefit amount or make them ineligible for SSI altogether. Also, the countable assets of the non-SSI spouse are allocated to that couple asset limit of $3,000. So if their countable assets exceed $3,000, then the SSI beneficiary would lose their SSI. So if the non-SSI spouse has saved $3,100 in a bank account, then the SSI spouse is gonna be ineligible, is gonna be cut off from SSI. So you can see that the overall eligibility and the monthly benefit amount of the SSI spouse is gonna be affected by their spouse who is not receiving SSI at all. Next slide. So this is some more information about these spousal deeming rules when an SSI beneficiary is married to a spouse who is not on SSI. So a small amount of income, earned or unearned income for the non-SSI spouse, such as less than $1,200 a month, which is less than the federal poverty level for an individual, this can cause the amount of SSI benefits for the SSI spouse to decrease. Even though the SSI spouse is not working, their benefits are gonna be reduced because the non-SSI spouse is working. And a modest amount of income for the non-SSI spouse, about $35,000 a year, which is less than half of the US median income, will bring the federal portion of the SSI benefit to zero. So the SSI spouse would lose their SSI altogether. And these examples presume no other source of income. The limits could be lower in many circumstances such as the SSI spouse also working or the SSI spouse also receiving SSDI benefits. Next slide. Okay, here's a rule that is unique to SSI. This is an income counting rule called In-Kind Support and Maintenance. So if an unmarried SSI beneficiary is living with somebody who's not on SSI, so they're not married, they're not found to be holding out, the contributions by that non-SSI person to the household living expenses can decrease the SSI benefits under these In-Kind Support and Maintenance rules. So an example is household expenses, meaning for rent, mortgage, housing costs paid by the non-SSI person can reduce the SSI benefits by up to one third of the federal benefit rate plus $20. So that's a reduction in the SSI benefits of $331.19 and 2024 under the Presumed Maximum Value rule. And if the SSI beneficiary lives with somebody and is not on the lease, SSA could find that the SSI beneficiary does not pay their fair share of the housing expenses and reduce their benefits by one third under a different rule called the value of the One-Third Reduction, or VTR rule. These In-Kind Support and Maintenance rules are very complicated, but I just wanted to give people an understanding of how SSI benefits can be reduced for them for an SSI person living with somebody who is not on SSI. Next slide. So here we have information about poverty rates for SSI and DAC beneficiaries. More than 40% of SSI beneficiaries live below the federal poverty level. SSI benefits are only 75% of the federal poverty level. So just living on SSI benefits alone means you'll be living below the federal poverty level. Also, nearly 36% of DAC beneficiaries live below the federal poverty level. And SSI and DAC beneficiaries have the highest poverty rates of all SSA beneficiary groups. Next slide. AYESHA: So one thing that in addition to some of the other things that we discussed, it's important to understand that Medicare and Medicaid are a pathway to access to disability supports. SSI typically provides Medicaid, and DAC provides a pathway to Medicaid. DAC beneficiaries are also eligible for Medicare after 24 months. Medicaid and Medicare are the primary or the exclusive vehicles in our society for many services and supports needed by people with significant disabilities, such as primary and preventative care, medical services for illness and chronic conditions, durable medical equipment, including wheelchairs and lifts, coverage for extended hospital stays, or personal attended care services, another home and community-based services, supportive housing and employment services. And just in summation, Medicaid and Medicare enable many disabled people to be integrated members of their communities. Next slide please. Some additional harms imposed by marriage penalties on disabled constituents and their loved ones are the limitations on forming families, lack of social recognition of important relationships, inability to engage in religious practice or conflict with religious beliefs. Finally, disconnection from the community. Next slide. There are at least four bills in the current Congress that aim to eliminate or reduce marriage penalties by people with disabilities. Darcy will be speaking about the SSI Savings Penalty Elimination Act, and we have a representative from Congress in the Panetta's office to discuss the Marriage Equality for Disabled Adults Act. But two additional bills that I wanted to flag are the Supplemental Security Income Restoration Act, which would be a comprehensive fix to many of the marriage penalties in the SSI program, and the Eliminating Marriage Penalties and SSI Act, otherwise known as EMPSA, which would address many of the SSI penalties for people who have intellectual or developmental disability. And without further ado, I am happy to introduce Seamus McKeon from Congressman Panetta's office. SEAMUS: Hi, everybody, and thank you so much, Ayesha. Please lemme know if you can't hear me. I'm relying on my Bluetooth having connected well. But thank you all so much for the opportunity to speak to the group today. It's really inspiring to see how many people are here this afternoon, or at least this afternoon my time. I'm joining you all from Washington, DC, and it's such a pleasure to be here. This issue came to us, of course, from Lori Long, who is a former constituent of my boss, representative Jimmy Panetta. Representative Panetta represents California's 19th congressional district. Previously before redistricting, he represented California's 20th congressional district during which time we represented Ms. Long. And so we were just really happy that we had the opportunity to hear her story, and that's what brought us into this issue. And from hearing her story, I think it would've been very difficult for any congressional office not to be motivated. And I think that that's the dynamic that we are hoping to replicate with so many other offices as we build this legislation, the Marriage Equality for Disabled Adults Act. So to back up a bit, I've been with Representative Panetta for a little over two years working on this bill. And the way that this issue was told to me when I first started working for the representative, was really as what it is, which is a love story. And you know, this is Lori's love story, and this is about her trying to live the same dignified life that any of the rest of us could expect and hope to live. And our goal in Representative Panetta's office is to make sure that the Medicare and Social Security systems extend her and her partner that dignity, which is, of course, something which a lot of couples have experienced, as we all know. And I mentioned that all because what we've found as we work to build this legislation is that it's really, this is an issue which, when congressional offices hear the stories from their constituents, when they hear the story of the people who are impacted by the marriage penalty, I think that it becomes so real and so personal and human, that that's where we've gotten just such, it's almost like a switch flips, that when someone hears a story, especially when you hears from someone they represent, I think that it's just, I mean, there's no option but to recognize how important this issue is. And so that's how we've had success building this bill in the past is, that when we gain co-sponsors for this legislation, typically, you know, I'll hear from other offices, I'll hear from other congressional offices saying, "You know, we heard about this issue directly. Someone reached out to our office, and now we would like to support this bill." It's the type of thing where I think that just the urgency is so real when you hear the personal stories behind this issue, that that's what's going to get this across the finish line that's gonna help us to build this legislation. So we introduced the American Quality to Disabled Adults Act last Congress in the 117th Congress. We've reintroduced a slightly different version for the 118th Congress, which includes some sense of congress language that clarifies some of the related issues that we'd like to clear up with the legislation, including things like, you know, the ability to travel and making sure that we don't accidentally have a situation where someone's state of residence or, you know, whether they choose to travel abroad would have an impact on their benefits as well. And so those are the changes we've made for the 118th Congress. We're continuing to build the legislation, and we're continuing to talk to other offices that are interested in the issue. We have presented it to the Congressional Progressive Caucus, and I've mentioned it to many of my colleagues from offices on that caucus to try to build the legislation. And our strategy moving forward is going to add co-sponsors, which again, is really not, I don't think would be half of as successful without all of the advocacy from folks, like the folks on this call today. And to just show the support through co-sponsorship that we can go to, especially our committee, the Ways & Means committee and say, "This is clearly something which has a lot of support. This is clearly something which has, yeah, support from members of Congress, which clearly has support from so many constituents of so many members of Congress and clearly has an urgency. And that means that we should bring it for a markup." So the strategy would be to build that support through co-sponsorship, to have that visible support, to work with the committee, to bring the bill for a markup and ultimately to bring it for a vote in the House of Representatives. And that's sort of the legislative path that we're working to follow right now. What I can say is that legislation is a long and often truly arduous process. And I think that that's one of the frustrating things, of course, is because once we hear these stories, once we work on these issues, you just recognize the very human and moral urgency of this issue. And I think that's one of the frustrations, of course, with the pace of legislation sometimes. But that doesn't change the fact that we need to keep pushing to create equality for these couples. And so what we'll be doing for the rest of this Congress and into the next Congress, if we need to, is we will continue to work to add co-sponsors to this bill. We will continue to work to build public support for this bill, and we'll continue to sort of build those visible demonstrations of support and urgency for this legislation so that we can get through the process, the legislative process so we can get the, I know the committee recognition, so we can get the full vote in the House to pass this legislation. And, obviously, that's a slow process, and I want to acknowledge that, and I want to acknowledge our commitment to the issue. And I want to acknowledge just what an organic process this has been, because I feel like the legislative process, of course, it's such a long and arduous and sometimes complicated process for us to get something through to a full vote. And so I always wanna bring it back to the fact that, you know, almost every co-sponsor that we get for this bill is the result of somebody reaching out and sharing a story with their member, with their representative here in Congress. And that's how we're going to get this across the finish line. So just to bring it back to the group, thank you all so much for being here. If there are any questions that our office can answer, please feel free to reach out. We're happy to answer any questions. And then thank you all just so much for your advocacy because I can't say enough, that's gonna make this bill a reality. AYESHA: Thank you so much, Seamus, for delivering that background and statement from Representative Panetta's office. Next, we are going to have Darcy Milburn. As Director of Social Security and Healthcare Policy at The Arc, Darcy Milburn advocates for policies advancing health equity and economic justice for people with disabilities. Prior to joining The Arc, Darcy served as a legislative assistant to Congressman Lloyd Doggett, responsible for health, Social Security, disability, energy, and environmental policy. She also contributed to global research and advocacy campaigns during other previous roles at Johns Hopkins University and Human Rights Watch. Darcy's received her Masters of Public Health from the Johns Hopkins Bloomberg School of Public Health and her BA from the Elliott School of International Affairs at George Washington University. It's been a true pleasure to partner with Darcy in this work. Thank you. DARCY: Thank you so much, Ayesha, and to everyone that's joined this call. I'm the Director of Social Security and Healthcare Policy at The Arc of the US. We're the nation's largest organization that works from the grassroots to the federal level to advocate for the rights of individuals with intellectual and developmental disabilities. We have more than 600 state and local chapters, so if there are any Hill offices, there's a really good chance that we have someone in our network, in your district. I'm here today to talk about really exciting developments about a piece of legislation called the SSI Savings Penalty Elimination Act. This bill is both bipartisan and bicameral. That means that there's versions of the bill in both the House and the Senate. And this bill addresses just one of the many marriage penalties that are affecting SSI beneficiaries today. And that marriage penalty is that 25% decrease in assets that people on SSI are faced with if they get married. And I'll share just a little bit more information about what that asset limit means and also who is supporting this bill and why. So, as Kate and Patrice mentioned already, an individual on SSI is not allowed to have more than $2,000 in total financial resources at any time. And married couples are only allowed $3,000. Those resources that count towards the asset limit include cash on hand, money in bank accounts, most retirement accounts, stocks, bonds, the value of life insurance policies and burial funds over a certain amount of money and some personal property. These asset limits have not been updated since 1984, and they have not been adjusted for inflation. And essentially what they're doing right now is that they are actively punishing people for working, saving, marrying, and building the future that they want for themselves and that they deserve. The SSI Savings Penalty Elimination Act is led by Senator Sherrod Brown from Ohio and Senator Bill Cassidy from Louisiana in the Senate and Representative Danny Davis and Representative Brian Fitzpatrick in the House. This bill would empower millions of people with disabilities to earn and save more money for their futures by raising the asset limits for individuals to $10,000, raising the asset limits for married couples to $20,000, which would help correct that harmful marriage penalty, and it would index the asset limits for inflation going forward. And there are more than 400 businesses, faith-based organizations and advocates that have endorsed the bill, including AARP, JPMorgan Chase, Microsoft, Nationwide, the US Chamber of Commerce, the National Association of Evangelicals, the US Conference of Catholic Bishops, the Bipartisan Policy Center, and more. And some reasons why this very diverse group supports this bill is that these antiquated asset rules are a barrier to workforce participation and building emergency savings. Many people who receive SSI want to work and do work, but the extremely low asset limit prevents people from saving money from paid work for fear that they could get kicked off of SSI if they save over $2,000. That fear is absolutely justified. Tens of thousands of recipients see their benefits suspended or permanently revoked every year for exceeding the asset limit. And then to talk a little bit more about how it penalizes marriage, these low asset limits aren't just a barrier to marriage, it also incentivizes divorce. Benefits can be eliminated due to the spouse's assets and dual eligible couples, as Kate mentioned, if a couple both receive SSI, must hold fewer resources when married than if they were to remain legally apart. And we see this as a critical human rights issue. What should be a personal decision about faith or commitment or the future that people want to build for themselves is turned into a financial dilemma. And the time really is now to pass the SSI Savings Penalty Elimination Act. For the reference of folks on this call who may be staffers on the Hill, or for the reference of folks who are constituents, one unique thing about this bill is that, in an effort to make sure that it is as bipartisan and that the sponsors are as balanced as possible, Democrats are being added with Republicans at the same time, which means that you can only add an additional Democrat if a Republican joins the bill. This is something that's called Noah's Arking, and it's a way to ensure that a bill has a really strong bipartisan support. But it does mean that our advocacy efforts are targeted right now in trying to encourage more members of the Ways & Means Committee, especially Republicans to join this bill in the House and in the Finance Committee in the Senate. I'm very happy to answer any and all questions that folks may have, and thank you so much for joining us today to learn more about these unjust marriage penalties. AYESHA: Thank you, Darcy. I'd just like to add in, I think I did not remember to introduce myself. So, hello, I'm Ayesha Lewis. I am a senior staff attorney at Disability Rights Education and Defense Fund. I have a couple of quick reminders to everyone. Please put any questions in the Q&A. The chat is for accessibility and tech issues. We're also not taking live questions, so we ask that you use the Q&A. Additionally, please add your email address so that, if we're not able to get to your questions, we can reach back out by email to answer. Okay, so we have our final panelist to speak today. Lori Long is a current DAC recipient and longtime promoter of Lori's Law, one of the SSA reforms currently pending before Congress. Lori and her partner have been engaged for almost eight years, but cannot marry because of SSA marriage penalties. Lori has been advocating for reform of the SSA marriage barriers and both the DAC and SSI program for years. Lori and her national advocacy work have been profiled by numerous media outlets, including The New York Times, Forbes, and NPR. And we're happy to introduce Lori who is joining us from the hospital. Okay, Lori. LORI: Okay, gimme just one moment to get set up the rest of the way here. Okay, can everyone hear me? DIANA: Yes, we can hear you okay. LORI: Perfect. Okay. Hello, everyone. My name is Lori Long. And I landed the role of advocate when my fiance Mark and I had to cancel our wedding plans after learning about DAC marriage barriers that effectively prohibit us and many other inter-abled couples from marriage. Because I received DAC, I would lose my life-saving healthcare and disability benefits if I married my fiance. Highlighting the absurdity of this situation is that I could marry without penalty, a billionaire receiving Social Security retirement benefits, but I cannot marry, without grave consequences, a hardworking man making the average US salary. The following are a few things that brought me to this advocate role. I met a wonderful man, fell in love, he asked me to marry him, I said yes. And then learned that the United States government treats people disabled as children on a parent's work record differently than they treat people disabled as adults on their own work record, and has established policies that effectively prohibit DAC recipients like myself from marrying who we love. So after a period of mourning, I regrouped and decided that I refused to accept that my beautiful little love story, that once upon a time I thought might never happen for me, would end in heartbreak. With that in mind, I said a prayer, wrote a "To Whom It May Concern" letter that I hand delivered to Congressman Jimmy Panetta's office and I began devising a plan of action. For Mark and myself, marriage has important religious aspects. It is a religious sacrament for us. We are not able to fulfill that, so we are being denied our religious freedoms as well as the right to marry. Every so often in our church, they offer a special blessing for those who have been married in increments of five years, like 5, 10, 15 years and so on. And you are asked to stand while you receive a special blessing. We don't get to participate in that. They also have marriage retreats, and Mark and I have been told we would need to stay in separate rooms with the engaged couples and not participate in the retreat for the married couples until we were, well, actually married. When teaching Sunday school, the kids would inquire if Mark and I were married and ask, "Why not?" You know, kids in their questions. Or what should they call us? Mrs. Lori, Mr. Mark. You know, kids know what's up. They really do, and trying to explain this unfortunate rule to them is challenging. When it comes to considering adoption to build the family of our choosing, preference is given to married couples. There is also the issue of when in a medical emergency, we can't even answer a simple question like, "Are you married?" Nor do we get the privileges or respect for our relationship given to married people. We celebrate our years of engagement at the restaurant where we had our first date, and people ask us how long we've been married. Thinking of a clever reply year after year gets kind of old. These things are hurtful, and make us feel as though we are not able to participate as fully in our community, including our church community, as we could if we were married. And being unable to marry, it yields the impression that our love or union is not valued to the same degree as the union of others, and it's really not a very good feeling. Part of the ADA was allowing people to live in their community. What we need to realize now and build upon is that for most people, living in the community is because you wish to live as part of your community. Living in the community is the where, but being part of the community is the why. When you leave love and marriage out of the conversation of community, you miss the bigger picture. People with disabilities will never really fully be integrated in the community as long as these kinds of hurtful policies continue to go unchecked, policies that make something as important as the fundamental right to marriage inaccessible. As we fight for this, we are continually reminded that time is marching on. We've had to say goodbye to family members and mentors in our lives that passed away and that we had hoped would witness our vows. Notably my mom, my aunt, Squirrel, and Mark's beloved grandmother. In closing, I would like to give a shout out to my partner, Mark. I am so very blessed to share this beautiful love with him. He never makes me feel less than because of my disability. Through our courtship, engagement, and now our daily lives, we have worked through all of the challenges thrown at us so far. We've done that together as a team. I'm certain that I am a better person because of this man who has loved me unconditionally. He has handled all of this with such incredible grace and never portrays me as though I were an inferior teammate because of my disability. Rather, we navigate each challenge on this journey together. We are calling on our legislators to help us navigate the rest of the way by passing these important bills. Thank you for listening and for your time today. AYESHA: Thank you so much, Lori. It's been amazing to hear from so many people who are sharing their stories and advocating for these changes. I just can't ever get enough. And hopefully, if folks feel the same way, we are going to be providing a very robust handout packet to people who have been registered by email. And so in addition to fact sheets and a copy of slides, we will be presenting additional written stories from directly impacted people who can speak to just how important this issue is and the impact that it has on their daily life. We have time for maybe a few questions. And I'm going to answer a couple quickly and then ask other folks to answer certain questions. Someone asked about the lifetime bar for DAC and whether or not you could get around the penalty if you marry and then divorce. That does not work for the DAC penalty specifically. It's a lifetime ban. So if you get married and you get divorced, you're still, for the rest of your life, banned from getting DAC benefits. Someone also asked what happens to Medicaid if two people are married and they're disabled and they both need personal attendant care services. It is still, in fact, possible, even if both spouses are married and in need of services, that their marriage, due to these penalties, could cause them to lose their Medicaid benefits. Obviously, it does depend a little bit on the circumstances, but it's really not a fair outcome. Another question someone asked was how the Social Security... Sorry, there are so many good questions. Darcy, could you speak to how people could find out if their member of Congress has co-sponsored any of the bills that we discussed and also what a layperson can do to advocate? DARCY: That's a great question. So the way to do that is, and we will include this in the resources we send you, there's a webpage called congress.gov that lists the bill and has an up-to-date list with all of the co-sponsors for both the House and the Senate. One of the most important things that we need help with right now is getting messages to members of Congress about your support for these bills. The Arc of the US has resources on our website to make it as easy as possible for you to do that. If you go to our website and click to taking action, there's a page of action alerts. And if you click on our SSI Action Alert, you can send a note to your member of Congress about your support for the SSI Savings Penalty Elimination Act with just a couple clicks. We also have an action alert about marriage penalties, which covers both the DAC bill and the SSI Savings Penalty Elimination Act. And we really appreciate any and all additional messages that you can send to your members of Congress right now because we have a limited time left between now and early next year to try and get this bill passed this Congress. AYESHA: Thank you, Darcy. And also, in addition to The Arc's page, DREDF has a page which we will link to in the materials about marriage equality, so you can also share your story with us. And check out our toolkit, which has a list of guides on ways that you can take action and help get these bills passed. Another question, I know we're at time, Kate, would it be possible for you to speak to the distinction between living with a partner who's a romantic partner versus living with someone who is a roommate, and how that affects benefits? KATE: Yeah, as I put in the Q&A just briefly, you know, if SSA determines that the couple is holding themselves out as married, even if they're not legally married, then they would impose the spousal deeming rules. But if SSA doesn't determine that they are holding out, they could still impose the One-Third Reduction under the In-Kind Support and Maintenance rules, depending on the circumstances of how they pay their housing expenses. So because the In-Kind Support and Maintenance rules are so complicated, I can't really give a very short answer to that, especially not without knowing more about how the people are paying their housing expenses. AYESHA: We had another question about Senate versions of the marriage equality bills. I believe there is the senate version of the SSI Savings Penalty Elimination Act, but for that Darcy, Seamus, could you speak to whether there's Senate versions of prospective bills? SEAMUS: I think I'm up first. So yeah, I waiting to see if Darcy came on screen first. No, we do not currently have a Senate yet lead this. I think this is something we're very interested in adding and it would be very helpful for us moving forward. So this is a major goal for us. Generally, bills that are introduced in both chambers, so bicameral bills are usually, I think that's usually a big help because it's one more way that we demonstrate the broad support for a piece of legislation. So this is something where we'll be working with Senate, we'll be reaching out to senators who have shown interest in these issues and inviting them to work with us moving forward. And yeah, we'll be sure to keep folks updated as that happens. AYESHA: Okay. Darcy? DARCY: Great. Thank you. So, I think so, I think Seamus covered it. So the Marriage Equality for Disabled Adults bill does not have a Senate version, but the SSI Savings Penalty Elimination Act does have a senate version. And so you can talk to your senators about the SSI Savings Penalty Elimination Act. And we'll be working together with advocates to try and find someone in the Senate who may be interested in sponsoring the Marriage Equality for Disabled Adults Act in the Senate. Yeah. Thank you. AYESHA: Thank you so much, Darcy. Thank you, everyone, for joining us. Also, please thank you so much to our wonderful a ASL interpreters and our CART interpreters. Thank you for helping to make this possible. If you have any questions, please feel free to follow up with us via email. Have a wonderful day.