This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
AYESHA ELAINE LEWIS: Welcome, everyone. Thank you for joining us. This is Ayesha. I'm an attorney for the Disability Rights Education and Defense Fund. We're going to have a discussion starting with Kate, me, and then all the panelists who have lived experience with marriage penalties. Finally, we're going to end with 10 to 15 minutes available for questions. So, starting, Kate Lang, Director, Federal Income Security, Justice in Aging. She joined in 2012. She's in the Washington, D.C. office. She works to improve the Social Security programs. In January 2023, she was nominated by President Biden.
KATE LANG: Thanks, Ayesha. I'm Kate Lang. I use she/her pronouns. I'm a woman in my 50s. I'm wearing a black shirt and gray pants. I'm so thrilled to be with everyone today. This is my first time at this conference. I really appreciate being asked to participate. As Ayesha said, I'm going to start by speaking for 10 minutes, laying out the different marriage penalties for Social Security Administration programs, and then we'll get into the good stuff. I will be as quick as possible, I want to make sure that everybody understands the different penalties we're talking about today.
So I'm going to start with talking about the penalties for supplemental security income, or SSI beneficiaries. If two people receiving SSI benefits are married to each other, this results in a 25% cut of both to the benefits they receive and to their asset limit. So under the Social Security Act, two SSI beneficiaries married to each other get a joint monthly benefit amount that's 25% lower than for two unmarried SSI beneficiaries. So two unmarried SSI beneficiaries, the current maximum rate is 914 dollars a month in 2023. So two people who are roommates, not married to each other, they would each get 914 dollars a month, or a total of 1,828 dollars but two married SSI beneficiaries living together are only going to get 25% less.
There's also an asset limit for SSI benefits. Since it is a means tested program, meant for persons with disabilities or older adults, there's an asset limit. So two unmarried SSI beneficiaries would be able to have a limit. There's a rule called holding out. Even if two SSI beneficiaries are not married to each other but present themselves to their community as if they were married, even if they have not gone through a marriage ceremony, SSA can decide these two SSI beneficiaries are holding out as married, even though they're not legally married. So if that finding is made, that means this couple is subject to the same 25% cut in their monthly benefit level and asset limit. In order to make this decision, a worker and a local SSA office asks all sorts of intrusive questions about your personal life, about what names you're known by, how you introduce each other, whether you say, This is my wife, my husband, my spouse.
Whether there are any bills, paperwork, tax returns that you're on together as if you're married. This is a terrible rule, but it's applied to SSI beneficiaries even if they don't go through with a legal marriage but they're living together and presenting to their community as married, then SSA will apply these rules to them. And then, if an SSI beneficiary is married to someone not receiving an SSI, there are still rules that apply to the situation called spousal deeming, where SSA looks at the income and assets of the non SSI spouse and counts some of that towards the SSI recipient.
And this, again, even if they're not legally married to each other. If SSA says that the SSI beneficiary is holding out as married to this non SSI spouse, they're going to apply these spousal deeming rules to them. So the portion of the income of the non SSI spouse is allocated to the SSI beneficiary and their monthly benefits are reduced, according to a complicated formula. Then the countable assets of the non SSI spouse are allocated to this 3,000 dollar asset limit for the couple. This can have a big impact on the benefits, the amount of benefits, and overall eligibility of the SSI recipient. This comes into issues when the non SSI spouse is working. Some of that income from working is counted against the benefits of the SSI spouse and also the assets. A lot of times, we hear about a non SSI spouse what's working and has a retirement account. If that retirement account is more than the 3,000 dollar asset limit, then the SSI beneficiary is not going to be eligible at all for any benefits.
This causes big problems for SSI beneficiaries with a non SSI spouse, if they're legally married or even if they're not legally married and living together and SSA determines that they're holding out as married. And there's another rule for SSI called in kind support and maintenance. This is where the help the SSI beneficiary receives as food and shelter counts against their benefits. It's counted as unearned income to them and reduces their benefits by up to a third. Even if they're unmarried and SSA says they're not holding out but they're living with their partner and their partner is not receiving SSI, then SSA may look at these in kind support and maintenance rules to see if they apply and will reduce the SSI beneficiaries benefits by up to a third. So, again, these rules, the in kind support and maintenance rules are very complicated, and SSA looks to see if the SSI beneficiary is basically paying their fair share half of the household expenses. If they're not, they say, Oh, your non SSI spouse is paying, so we're going to reduce your benefits for these in kind support and maintenance rules.
So those are all the SSI rules. There's another kind of benefit with we see things. DAC, disabled adult child benefits. They're disabled adults whose disability began before the age of 22, and they're a child of a parent who is deceased or currently receiving disability or retirement benefits from SSA. Then that DAC beneficiary can receive monthly benefits on their parents' work history based on the benefit levels of their parents. They will also receive Medicare after a two year wait period. There's a pathway to Medicaid for DAC. Those who are married lose all those benefits. So it's kind of an all or nothing thing. Fortunately, there are no holding out rules for DAC beneficiaries like there are for SSI beneficiaries, but if they get married, they lose access to those benefits.
If their spouse is another beneficiary or receiving SSDI benefits or receiving retirement benefits from SSA, then they don't lose their DAC benefits. But, if the person they marry wants to receive SSI, then they would lose their DAC benefits if they married the SSI beneficiary or if they married a non beneficiary. So this is a very punitive rule that we'll hear more about from folks with lived experience on the panel. So those are the rules of what we're talking about today. I will hand it over to Ayesha.
AYESHA ELAINE LEWIS: Thank you, Kate. Again, I will do a brief introduction. I'm Ayesha Elaine Lewis, Staff Attorney & Leadership Team at Disability Rights Education & Defense Fund. I'm leading the work around marriage quality for disabled people. Thank you for joining us.
Kate laid out all of the different penalties that are involved that make it so hard for people with disabilities to marry the person of their choice. There's been a push for advocacy for years to try to get this changed. And so, in the last Congress, there were four bills introduced that would each impact some portion of the penalties that face people with disabilities who are looking to be married. For example, this SSI savings penalty Elimination Act was introduced by Senator Brown. And the income restoration Act was also introduced by Senator Brown. Congressman Jimmy Panetta from California introduced the marriage equality for persons with disabilities Bill.
If all of those bills passed, we would be able to have so many more people marry and live with the partners of their choice. We have a new Congress. It didn't pass last time. We're working with partners to collaborate to introduce bills. Panetta's bill is going to be introduced soon. We're going keep pushing. So another thing that Social Security Administration could do is change some of the rules around SSI and how it decides to do spousal deeming. A lot of the rules that Kate talked about are baked into the statute, so there's nothing that can be done if Congress doesn't change it, generally.
But the Social Security Administration can decide how much of their spouse's income would be counted for purposes of SSI. So they're given the authority to exclude income that would be inequitable. Arguably, it's inequitable to count the income that the other person would need for their basic survival needs. We see that in more expensive states, more expensive areas where people have is to live so they have access to public transit or their medical teams. So that's one area of efficacy that was called on the Administration to undertake. Their own research paper has a way to fix it almost 20 years ago. So we think that's time for that to move. Another avenue for potentially changing these penalties is through litigation. I'm sure you folks are aware of the Hobby Lobby case that came out a few years ago from the Supreme Court where a for profit company claimed that their religious freedom was violated by the Affordable Care Act.
What the Religious Freedom Restoration Act, it gives people a way to challenge any practice by the federal government that impedes their religious freedom. So for the Hobby Lobby Corporation, they said that there was compliance with the contraceptive mandate would violate their religious beliefs. As you will hear from some of our panelists today, religious freedom is important to people, and if it works for corporations, people should have just as many rights under the constitution. DREDF filed a complaint last year asking if they provide an accommodation for Lori Long and it set a precedent. You will hear what it means for people to be able to freely marry the person of their choice.
Next, we'll hear from Lori Long. Lori Long is a current DAC recipient and a long time promoter of #LoriesLaw. Lori has been advocating for both DAC and SSI program for years, and her work has been profiled by numerous media outlets, including "The New York Times" and NPR. Lori?
LORI LONG: Thank you. My name is Lori Long. My path to marriage equality within the disability community really started when my fiancé, Mark, and I had to cancel our wedding plans about learning about DAC marriage SSI barriers that prohibit us and many couples from marriage. Because I received the DAC benefits, I would lose those benefits if I married my fiancé, highlighting the absolute absurdity of the situation, I could marry a billionaire receiving Social Security retirement benefits, but I could not marry a hard working man, making the average U.S. salary or I will lose my vital health care and disability insurance and all of my DAC SSI benefits.
My path to advocacy work is love. I love saying that. I know it may sound just a little silly, but it really is. I met a wonderful man. I fell in love. He asked me to marry him. I said yes. Then we learned that the United States government treats people disabled as children on a parents' work record for SSDI, and, in my case, DAC SSDI, differently than people that are disabled adults on their own work record. They have established rules that effectively prohibit DAC recipients from marrying who we love. So, after a period of being really ticked off and quite a bit of mourning, I decided that enough is enough. I refused to accept that my beautiful, little love story, that once upon a time that I thought would never happen for me would end in heartbreak.
I do not believe this terrible policy has any right to determine the final chapter. With that in mind, I said a prayer, wrote a to whom it may concern letter, and I handed it to Jimmy Panetta's office. The first thing I needed, after Mark's blessing, was help. I can't tell you the countless number of notes I got before the awesome team at DREDF finally gave me a yes and said, I think we just might be the right people to help you on this. I also knew I needed help on the legislative side. My mom, having been a journalist, I recognized the power of media. I began contacting the media outlets in town, telling them my story. I guess that went over all right because after some great local coverage, we ended up in the "New York Times" as well as other national media outlets.
I also Googled and, you know, wonderful Google these days. I Googled where my local legislators were and how to contact them. That would be Congressman Jimmy Panetta. Media didn't hurt when it came to selling my legislators on change. Now we have state legislation that has been passed and chaptered in and a federal bill about to be reintroduced. There are very hurtful consequences to not having the legal recognition as a married couple. It makes us feel left out and causes undue stress in certain situations. For Mark and myself, marriage has important religious aspects to it. For us, marriage is a religious sacrament. We're not able to fulfill that. We're being denied our religious freedoms as well as the right to marry. Every so often in our lovely little church, they offer a special little blessing for those who have been married for five, 10, 15 years and so on.
You're asked to stand or come forward while you receive a special blessing. Because we are not married, we cannot participate in that. There are also church sponsored marriage retreats, and Mark and I have been told we would need to stay in the separate rooms with the engaged couple and not participate in the retreat for the married couple s until we were, well, married. When teaching Sunday school, kids are smart. Kids would inquire if Mark and I were married and asked why not and what should they call us? Is it Mr. Mark and Miss Lori. It's challenging. When it comes to considering adoption to build the family of our choosing, as we're allowed to do, preference is given. There's also the issue of when I'm having an emergency or if Mark were to experience an emergency. I say me because that's usually the case in a medical emergency. We can't answer a simple question like: Are you married?
Nor do we get the privileges or respect that come with that answer. We celebrate our years of engagement at the restaurant where we had our first date, and people excitedly ask us how long we've been married. I know they mean well, but thinking of a clever reply every year gets a little old. These things are hurtful and make me and us feel as show we're not able to participate as fully in our community and also in our church community as we could if we were married. Being unable to marry yields the impression that our love or our union is not valued to the same degree as the union of others or as a non disabled couple. That's not a very good feeling.
You know, part of the ADA was allowing people to live in their community. I think what we need to realize now and perhaps build upon is that for most people, I think living in community is because you wish to live as part of your community. So 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 really miss the bigger picture. There are valuable aspects to being married. People with disabilities will never really be fully integrated in the community as long as these kinds of discriminatory policies continue to go unchecked and make something as important as marriage by the way, a fundamental right inaccessible.
Recently, the U.S. Government codified interracial and same sex marriage rights but completely left out the disability community. It's foolery to think that there are no interracial or same sex couples that cannot marry because of disability marriage barriers. As an interracial couple, Mark and I are very aware of this. So every time we saw a social media post or tweet like, we did it! And, Kumbaya, we were raising our hands like, Wait a minute here! You left the disability community out of the marriage conversation again. When is it ever going to be our time?
They wrote and passed that legislation in a matter of a few months. The Marriage Equality for Disabled Adults Act did not make it out of one committee in an entire year. And that's not the bring the mood down in any way, but it is a stark reminder that we are going to have to fight for this. I'm hopeful that we will gain some allies here today. As we fight for this, we are continually reminded that time is marching on. We've had to say goodbye to family members and members in our lives that mentors in our lives that passed away and that we had really wanted and hoped to witness our vows. Notably, my mom, Mark's beloved grandmother, and just a few weeks ago, my pressure Aunt Squirrel.
Right behind me is my partner Mark. I'm so 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 life, we have worked through all of the challenges thrown at us so far. We've done that together as a team. We love each other and build each other up, and I am certain that I am a better person because of this man who has loved me unconditionally. He has handled this with grace and never treated me like an inferior teammate because I have a disability. Rather, we navigate each challenge on this journey together. The one thing we have not been able to figure out yet is how to correct this discriminatory laws in the disability community. We have a bill about to be introduced, but we need it to move. We are not giving up.
(Applause)
AYESHA ELAINE LEWIS: Thank you so much, Lori. As I said, the people directly impacted by these penalties are the real rock stars and can really tell the story of what it means, so much more than a lawyer who is not directly impacted can. Our next panelist is Patrice Jetter, Special Olympics Medalist. She's a disabled artist who uses her creativity to move through the world and build with her mind. She fought disability discrimination for years to become a crossing guard in her hometown. She's competed in a wide array of events in the Special Olympics. Horseback riding, skiing, those are just a few of the events. She's performed at the United Nations, a comic book artist, a costume designer for a rock band. She hosted a public access kids show for many years and was featured in a Netflix series. Thank you for joining us.
PATRICE JETTER: My name is Patrice. I'm a totally cool person with a disability. I'm African American with burgundy braids. I am wearing a red, black, and gold military style band jacket. I found out that people with disabilities couldn't marry when I was dating my first boyfriend way back when. Everything was all good until we went to the Social Security office, and it was almost like the worker was like, Are you sure you want to do that? We didn't understand why he was saying that. He was saying, Don't get me wrong. I'm all about people with disabilities wanting to get married, but you guys would come out financially better if you guys just lived together instead of getting married because they will take away everything. He said that he was just letting me know ahead of time because, I don't want you to be upset. Well, I appreciated his honesty, but, by that time, it was already too late because I was already upset.
(Laughter)
PATRICE JETTER: But that was just the way it was. You just had to accept it and keep plotting on. Well, that relationship didn't work out, which was kind of a good thing because I would have never had the opportunity to be with somebody as wonderful as Gary. Gary and I met over 35 years ago at a shelter workshop. We were just friends. That was, like, it. We were the type of friends that could go to each other and get into a water bottle fight for no reason. We could laugh at the silliest things. Like, we'll still watch episodes of "Sesame Street" and reminisce. We enjoy that type of thing. We watch the Looney Tunes stuff. It's not funny if you cut out the roadrunner and the dynamic stuff. We all know that's fake.
My parents passed on. His parents got sick and passed on. We were both in relationships that just didn't work out. Somehow, our friendship blossomed into something bigger. We wanted to get married, but we knew what was stacked against us. When Gary got sick and had a medical emergency himself and his mom was also in a hospital because she had an amputation and wasn't able to come home, I was the one driving back and forth on the weekends to help Gary and his family because they really needed help. They were a proud family, and they just wouldn't take it. What happened was I just lost my train of thought in mid sentence, and I was on a roll.
(Laughter)
AYESHA ELAINE LEWIS: It happens to the best of us. You're good.
PATRICE JETTER: Thank you. What happened was when Gary ended up with a health emergency and he had to take help, I had to help Gary that things your own best friend wouldn't help you with. Our friendship just grew. I posted pictures on Facebook because Gary had very little family left. So I was just letting people know Gary is sick. Posted pictures of the before and after progress as he's getting better.
His cousin contacted me through Facebook Messenger. They had not seen each other in more than 30 years. He was leery, but the cousin told us, when they got to know us, why don't you guys, instead of trying to get married, have a commitment ceremony. We're like, A commitment ceremony, what's that? It turns out that his cousin had a commitment ceremony in Boise, Idaho. They know you can't get married. So it's the next best thing to getting married without the legal paperwork. We had enough support that a lot of people supported that. Growing up, in a Catholic household with a mom who was a minister who cussed out Archbishop Darie and didn't blink.
(Laughter)
PATRICE JETTER: I feel like growing up that way, God doesn't make the rules of the land. Mankind does. So I feel in my situation, that God understands why I had this commitment ceremony because as much as I would love to get legally married, I need my health insurance and things. Life is short. I feel like I'm going to be happy. And thanks. If God is going to say something to me, that's just one other thing he's going to say to me about when I'm on the other side, and I will just deal with it.
(Laughter)
PATRICE JETTER: It was so great because everybody in our wedding party all had a disability. It was all about a lot of our friends from Special Olympics. Gary's family came from Boise, Idaho.
(Audio is cutting in and out)
PATRICE JETTER: We both have autism. If not for us, but for the next generation, it should be a choice. Like in Lori's case, where for religion, you want to get married legally, and I feel that that should be for everyone. I'm going to wrap it up, and we're going to do what we have to do to make this happen. Everything should be inclusive, not exclusive. I don't think they're getting the message yet. Last thing I'm going to say, as a crossing guard, I tell kids to stay in school, get a good education, run for office so we can fire all these people at the top making decisions, and then you can give everybody what they need, and kids love that.
(Cheers and applause)
PATRICE JETTER: Thank you.
AYESHA ELAINE LEWIS: Thank you, Patrice. Our final panelist is Melissa Shang. She's a sophomore at Harvard University. She currently receives SSI. She's been a disability activist since she was only 10 years old when she started a petition for American Girl to release a doll with a disability. It went viral and was featured in Buzz Feed. She's written for magazines and published a book. Melissa has spoken at the United Nations and done a Ted X talk. She's also president of the Disability Justice Club.
MELISSA SHANG: My name is Melissa. I was born with muscular dystrophy. When I first heard about this, I was speechless. Previously, I had naively thought that marriage inequality was a thing of the past, that future me and future everybody could marry anybody we wanted. I was now left to grapple with the concept that that's not the case for so many disabled people, even for myself. For most of us, it's not feasible or even possible to expect us to rely on our spouses for all of these benefits. Still, I don't think I ever truly realized the devastation inflicted by these boundaries. Some have been dating significant others for almost a decade. Some wanted to plan out their wedding. One member said they were inspired to pay more attention to their health.
These stories I was told were heartbreaking, but they were also passionate and resilient and packed with so much love. They are but a few of the hundreds of thousands of stories from disability couples facing these penalties. It should be a dream to fall in love and get married. I think the thought of marrying the people we love should bring us joy like no other. I just think it's so devastating that that's not the reality. The reality is many of us are terrified because that's not even an option for us. So that's why I'm so passionate about ensuring that everybody has the right to marry people we love is important. Thank you.
(Applause)
AYESHA ELAINE LEWIS: Thank you so much, Melissa. Can we get a round of applause for all of our participants.
(Applause)
AYESHA ELAINE LEWIS: Wonderful. Before we go into questions, I just wanted to leave you with a final call to action. We're hoping that all of you, after learning about these penalties and hearing directly from people about how these penalties actually impact them, that you would be interested in supporting our efforts, learning more, and helping to make marriage equality a true reality for everyone with disabilities. So what does that mean? You can first learn more about these penalties. DREDF has a website with pages about marriage equality. You can go to our website, www.dredf.org. You can support the bills that are addressing the different DAC and SSI penalties when they're reintroduced or any new bills introduced in the current Congress. We have a page for people to share their stories. I courage everyone to share with everyone you know.
You've seen firsthand how powerful these stories are. We want to hear from as many people as we can. We want, ideally, stories from everyone in every congressional district in the country so we can get all the members of Congress invested and understand just how important this issue is to people with disabilities and their partners and their families and their religious communities and their larger communities as a whole. I've had folks come and tell me, I don't have a disability, but I have a disabled child. I want my child to have a full life and love and family, even after I'm gone. So we would love to have people share their stories to help affect the changes we're looking to see.
You're also invited to join us this summer for action in D.C. to call for marriage equality. Patrice is going to lead another ceremony. We're hoping to have people from all over the country declare their love and celebrate their love and also call for change. You can sign up on our sign up sheet to get updated whenever we have new news about our marriage equality efforts. The sign up sheet is here. All right. Do folks have any questions for us?
Question and Answer section
AUDIENCE MEMBER: I hear you're collecting stories. Can they be stories that are dated? For example, somebody that had a relationship that couldn't get married in, like, 1995 to 2005?
AYESHA ELAINE LEWIS: Yes. Any other questions? You can also ask directly to the panelists as well.
AUDIENCE MEMBER: Okay. In your opinion I'm going to be in touch with you anyway at a later date but what do you see is the most feasible legislative or administrative approach for getting marriage penalties eliminated, especially legislative? I think that's the best angle at this point.
AYESHA ELAINE LEWIS: Well, that's a great question. It's really complicated. That's the short answer. Because these penalties were not designed in one specific policy, they're baked into a lot of different policies over time, and nobody sit and thought about how to design disability benefits for all Americans. A lot of pieces, frankly, don't fit together. I agree with you. I think legislation is the best option to get rid of these penalties, but it's going to take a lot of careful looking just to see how they interact with each other and make those changes.
AUDIENCE MEMBER: Yeah. Yeah. I agree. Thank you.
AYESHA ELAINE LEWIS: Happy to talk to you more.
AUDIENCE MEMBER: I do want to talk to you off the record. Kate, do you have more to add?
KATE LANG: No. I think, just as Ayesha said, these different parts of laws are passed at different times. So they don't make sense. They don't work together. They're inconsistent. If you think about them logically, they don't lead to a logical conclusion that makes any sense at all. We have to make careful, as we undo them, that we don't end up with unintended consequences that will harm people.
AUDIENCE MEMBER: That's a lot of what I heard, that it's a patchwork of legislation that led to the current SSI DAC marriage penalties.
LORI LONG: I think this is kind of what happens when you have rules and regulations that are patchwork but also that were made in the 1950s, and then you don't look at them or you don't have, like, an oversight. I mean, I think maybe we should what do you think, Ayesha? suggest that the Congress or Senate has some oversight so every year they look at certain rules and regulations and say: Is this working or not?
I think when things are neglected for so long I just think they've ignored it for a very long time, and then it kind of boils over and blows up, and then people get really frustrated about it. I think this is what happens when you make rules and regulations and you don't sit down and have a group of people really look at it yearly or every couple of years and say: Is this working? Is there something wrong with this?
AYESHA ELAINE LEWIS: I think it makes sense. There's so many advances socially, medically, technologically. People can do so much more than was possible in the 1950s, and that's a great thing. Do you have a question?
AUDIENCE MEMBER: I have questions and comments. First of all, does a commitment ceremony violate the putting yourself out as married?
KATE LANG: The rules only apply to SSI.
AUDIENCE MEMBER: So would there be a problem with the commitment ceremony? I've had SSI, SSDI, I mean, this is stuff we live with. Medicaid also has the same penalties. To be eligible, you have a 2,000 dollar limit. If you're married, they count it and deem a certain amount. Have you thought about going at that? It seems like that would be another constituency that you would be able to work with. That's also a marriage penalty. So much so that sometimes we counsel couples to get divorced, especially if one of them needs care and the other doesn't. We say, Get divorced and that way you will be able to do better financially.
Sometimes it's necessary to get divorced because there's not enough money without divorce in the picture. This is a real, real problem with Medicaid applicability issues. It seems like you should also partner with the people trying to qualify for Medicaid because they have many, many of the same issues you're talking about, and it's very, very important. I was surprised you didn't mention it. I know it's not Social Security, but it's such a sister program that follows along with the same rules. It's something. I mean, when I talk to some of the people that lay out these rules, it's like, I mean, some of their attitudes are really bad. Some think people with disabilities shouldn't get married. It's really disgusting. I'm not going to say I agree with it at all, but it's almost like you have to retrain them to think. Hey, people should be able to marry who they want.
You were careful to mention that it's a marriage penalty. You guys kept saying you can't get married because of the marriage penalty. So it's not a prohibition that you can't go to church and get married. It's that doing that is financially prohibitory. So you should make that clear when you say it so people realize it's the penalty that's issued, not that the government says you can't get married.
LORI LONG: Yes. We've tried to emphasize when I say, "effectively prohibited from marriage."
AUDIENCE MEMBER: No. You were good.
LORI LONG: It's almost the same thing because when you give government the power, the purse strings to pull, it's kind of the same thing. I mean, I get that there are differences, but I do see it's a very good point. I think that's why the terminology that I have learned that works best is "effectively prohibited." I mean, for me losing life saving health care would be
AUDIENCE MEMBER: I don't disagree with you.
LORI LONG: I get you. It's an excellent point, and being clear is important, for sure.
AYESHA ELAINE LEWIS: And thank you for reminding me. I blanked on that part I meant to touch on. Yes, when we made the complaint last year with the Social Security Administration, we also argued that because of the restrictions and the fact that people would lose life saving care, not just the financial realm but risk their own lives, it does create an effective barrier to marriage.
AUDIENCE MEMBER: There's also an incentive to stay married with Medicaid issues.
LORI LONG: In some of the articles we've been in, we've talked about the force to divorce.
AUDIENCE MEMBER: I've seen it.
LORI LONG: I did want to say really quick, too, that
AYESHA ELAINE LEWIS: Sorry! Real quick. We argued that it violates the fundamental right to marry under due process. Also, we argue for equal protection, but it's a trickier path. In addition well, I'm sorry. I'm blanking on the third, but it's an interesting aspect to cover.
PATRICE JETTER: I actually had a friend that happened to. She got married. Because she took seizure medication, without Medicaid, it costs 150 dollar for a 30 day supply. In order for her to get her medications covered, she had to file for an annulment after only being married four days. That was really hard, but she said, If I don't have my medication, I'm going to end up in a hospital. So it's almost like what we were saying.
All these programs that are tied in to help people, Medicaid, Medicare, HUD, Division of Developmental Disabilities, that everything has to be kept up to speed because if you allow a person with a disability to have more money, HUD is income based. So, yeah, I might be able to have 10,000 dollar in the bank, but it will be wiped out when HUD goes, Ooh, you have this so you can pay market rent. Most people, if it wasn't for HUD, we would all be living in a cardboard box because rents are very expensive now, and your check is not big enough to cover market rent pretty much anywhere. So everything needs to be caught up to speed.
AYESHA ELAINE LEWIS: Exactly. And to your earlier point, Medicaid buy in programs are another area where there's a lot of push for marriage equality. Several states have been expanding them to allow for greater access. Two recent ones are Pennsylvania and New Jersey. We're hoping to get California onboard to make it easier for people to get married when they're on Medicaid. It addresses the asset limits.
KATE LANG: These things are all very complicated and interconnected. If you start pulling one thread, and, you know, things start unravelling, but you don't want to end up harming people by making these changes. So we have to think carefully. You know, if we just eliminate that marriage penalty and SSI, what are the consequences for Medicaid and so on? As Patrice was saying, all these other programs that people rely on, we want to make sure that we're not ending up in a worse position for people by making the changes.
AUDIENCE MEMBER: I don't know if you've been in touch with the National Academy (indiscernible), but a lot of us are very well aware of this. We have clients in all of these programs, and we have to know marriage is one of the big things and the big issues we address. It's very important that you get as many colleagues along with you and the elder law community is very, very sensitive to this. Not only do we have clients that are looking for Medicaid, but we have clients who have children who have the other issues. So it falls through, and I would suggest you call the elder law community because we face that every day.
LORI LONG: I'm glad you brought that up. We have been working on that. Many people who have DAC have DAC Medicaid. I, myself, do not. I work a regular job. I have to quit my job and lose that in order for things to work. It's very tricky and intricate, but there are about half a dozen states so far that have realistic rules regarding marriage, and they're working disabled program Medicaid buy in. That's one of the marriage equality components that we are looking at, and I know that Ayesha, we're working on trying to get California there.
AYESHA ELAINE LEWIS: We're working on it. We're so lucky to be working together to get a sense of not just the younger disability community but also the elder community and what they're doing. Do you have anything you want to add on that?
KATE LANG: No. Just to reassure you that we're familiar with all of these issues, and we continue to work in larger coalitions and are mindful of all the issues folks are facing.
AYESHA ELAINE LEWIS: All right. We're at time, but thank you so much for joining us. Thank you for your questions and your interest. We have a sign up sheet here if you would like to learn more about what we're doing. I have cards. Please feel free to email me, email Kate. Reach out to us if you would like to learn more about the work and especially if you would like to be involved. Thank you.
(Applause)
AUDIENCE MEMBER: Remember, all of us who are not disabled are only temporarily abled. So many things happen. So we're all just temporarily abled.
LORI LONG: I love it. Mark has also reminded me, Lori, you know what, disability rights, we need to move it forward, but don't forget I'm the one who got down on one knee and asked you to marry me, so it's really a disability/civil rights issue because it affects our non disabled partners as well.
AYESHA ELAINE LEWIS: Absolutely.
PATRICE JETTER: This whole thing should be a personal choice because people that don't have disabilities, they have the right to be able to choose, and so should we. So I feel that everybody should have the right to choose.
LORI LONG: Yep. So we're not giving up; right?
PATRICE JETTER: Nope. Because I'm going to help with your declarations.
LORI LONG: Yeah.
(Laughter)