April 9, 2026 “Social Security, Disability, and Equity: New Research and What It Means for Policy” Webinar Transcript SILVIA YEE: That's an important point. Hello, everyone. Welcome to our Webinar and the Social Security Administration. It's great to have you join us. And just to be sure you're at the right Webinar, we are… April is National Social Security Month. DREDF, Disability Rights Education and Defense Fund, and the American Association of People with Disabilities have the pleasure of hosting a great new report that is out on Social Security and particularly looking at what has happened to Social Security over 2025. And with the operation of critical SSI and SSDI payments, under poll that the Trump Administration has put into place. I am Silvia Yee. I'm the Policy Director at Disability Rights Education and Defense Fund, and today we'll be going through the road show of the Webinar. We'll begin by speaking to the three researchers who worked on the report on the things they've found out and why they wrote the report. We'll be moving to Tracey Gronniger, who is with Justice in Aging, and speaking with Maria Town with AAPD, the American Association of People With Disabilities. I will be introducing each of these individuals a little more as we get there. So just before I introduce the authors a little more we'll put up a poll question for all of you, so we can learn a little bit more about you. I'll ask Ally to put up the poll questions. ALLY CLINE: I just launched it. SILVIA YEE: Thank you so much. I'm giving you all a minute or so to finish up. Thank you so much for answering. Looking at it in real time, many of you are answering it. We have a lot of people who are Claimants or applicants of Supplemental Security Income or Social Security Disability Insurance. I think as much as often acronyms are disliked we are going to be using SSI or SSDI because it saves us speaking a lot of words during this Webinar. We also have a lot of people who are policy advocates. Welcome. And some researchers, as well. Great. Thank you. I think I will probably end the poll, then, having given I've been among those who answer late and then feel bad because it ended before I got to it but that's all right. No judgments here. Oh, okay. Share the results. So you can see them all. Yes, and I anticipate some of you are in more than one category, I appreciate that, too. We just wanted a rough idea of who's joining us, so I'm going to stop sharing at this point, and then we'll continue on with the Webinar. So let me introduce the three authors and then we'll dive into the questions so you can hear from them directly because I know that's a big reason of why you're here. Katie Savin is an Assistant Professor in the School of Social Work at California State University, Sacramento and the inaugural Ford Fellow in disability policy research at the National Academy of social insurance. Their research focuses on disability policy, administrative burden, and the welfare state and it is informed by their own background as a medical social worker and their own experience as a Social Security Disability Research recipient. Callie Freitag is an Assistant Professor of Social Work at the University of Wisconsin Madison. Callie's research focuses on social policies related to aging, disability and poverty in the U.S. Kelli previously worked as a policy analyst and advocate at the state and Federal level. And Matt Borus is an Assistant Professor in the Department of Social Work at Binghamton University, which is the State university of New York. Matt's research explores how people navigate the often contradictory meanings of disability embedded in different policies? The U.S. and Matt previously worked as a Federal policy research analyst and as a social worker. So wonderful to have you join us, so wonderful you did this work. I'm going to ask you, I think actually I'll first turn to Katie and ask, what first prompted your interest in this topic? KATIE SAVIN: Sure Silvia, and thanks so much to DREDF and AAPD for hosting this report and this Webinar. Really appreciate it. So without trying not to go back to too far as you mentioned I am a former SSDI recipient. I then have spent the last five years or so researching SSI and SSDI and the experience of Claimants. So it was actually around the start of the Trump Administration 2.0 when I was working on a project, interviewing SSI recipients and learning about their experiences with administrative burden when that grant was canceled because of in TDI policies, and my coauthors had similar experiences, and we saw this rapid series of policy and administrative changes. We saw the greatest staff reductions in the history of SSA. We saw pushing Customer Service online we saw rapid changes to policies around overpayments and I was very concerned that I'd already been talking to people who were having huge barriers to accessing their benefits who were experiencing massive amounts of administrative burden and suddenly we're in a situation where our research had been defunded, the Customer Service and staffing issues were only getting worse and then Social Security took down their publicfacing Customer Service data from their website. So felt like there were likely very severe problems happening and we didn't know what they were so it felt really important to kind of figure out a way to account for that, to document it, be able to know what's happening, sort of a first step to doing something about it. So I'll save the rest for your other questions. SILVIA YEE: The format of the report focuses a lot on the experiences of legal services providers and benefits specialists, so to Katie and Matt, why did you choose to interview this group? KATIE SAVIN: I can start off and then hand over to Matt. So I think I know Matt and I both typically in our qualitative research interview folks who are receiving benefits and think that's an extremely important perspective to be highlighting in analyzing policy, right, the people who are actually living on it. And in this situation, we had to think creatively about methods because it was maybe April or May of 2025, we knew there were major changes happening but not every Claimant is contacting Social Security every month, right? And so it was hard to figure out how would we have a design a study where we could make sure that we talked to people who had interacted with Social Security both before and after some of these changes. And we did some kind of preliminary discussions with legal service providers and found they were having really dramatic experiences of a changing agency and realized that they really have is that a kind of birds eye view of what was happening in 2024 and what do things look like in 2025 come February as these changes started happening. We know there have been barriers for a long time to accessing these benefits. We wanted to be very careful that we could design a study that would be sure to distinguish between what were those ongoing longstanding barriers and what were new barriers that were experiences happening after these policy changes. MATTHEW BORUS: Thanks, Katie. And to build on that, I just wanted to say for our audience, for those who are used to kind of seeing reports with tables of statistics, this may seem like a different form of research than you're used to but we just want to stress that qualitative data is data. And that interview transcripts are as much data as counts of beneficiaries or average time between an application and a final decision on someone's eligibility and that as we did this we were really careful to recruit a range of respondents from across the regions of the U.S., in different roles and in different sizes and types of organizations who as Katie said have this indepth, ongoing relationship with SSA that allowed them to really assess changes. And we put all of this data through a rigorous process of, what's called qualitative coding, where the three of us and a set of research assistants who did amazing work really reviewed transcripts multiple times to identify themes and separate them from outliers, and this really let us dig in close to how SSA processes changed in 2025. When I think of some of the things we learned like the detailed accounts of obstacles faced by rural elders trying to access benefits online or a story of how handmade signs popped up one day in the windows of a Social Security Field Office, I think about how this wouldn't have come up in quantitative data, like Customer Service metrics or in a multiplechoice survey. And so that's some of what this can reveal and it also can as Katie was saying help to sort of uncover the mechanisms behind other changes numbers in quantitative data like the reduced wait call wait times that SSA likes to claim and that's really important in this moment particularly after, as Katie said, SSA removed live Customer Service metrics from their website. And so when they say advocates are getting their cats answered faster qualitative data allows us to look at well is that actually only after they were rerouted to an office that can't actually help them which means they had to call back and spend more time on the phone? SILVIA YEE: Thank you, that's really instructive and very helpful to place the report in context. What do you think were the key barriers then? What did you uncover and find were the key barriers to Social Security Administration disability programs that arose in 2025? CALLIE FREITAG: Thanks Silvia, I'll take that to start. This is Callie Freitag with UW Madison and thank you for having us. I want to start with the end of your question first, the "in 2025." Because we know there have been longstanding barriers to access Social Security Disability programs since the programs began, right? We know this from lived experience from research from being people in the world, right? We know that especially disability programs have never been easy to access. So what we did is when we were interviewing service providers we were asking, for every change that they listed, is this new? Did this begin in 2025? Or is this a longstanding issue? Is it worse now than it was before? So I just want to point out that we were really careful in our interviewing and in our analysis process to try and uncover what did DOGE and the Trump Administration kind of impose on SSA programs and Customer Service in 2025 so that's the big caveat to say we're really focused on what was happening in 2025. So what did we find? Well, we found that in 2025 our respondents said that it had gotten harder to access SSA than ever before, right? They told a story that during the pandemic there were office closures and things had gotten hard but that there had been recovery, right? And that by the end of 2024, things were getting more back to normal and then starting with the second Trump Administration and DOGE entering the Social Security Administration or starting to take hold of the Social Security Administration some strange things started happening and they led to our response dents, they described as getting stuck in a loop. I'll tell you the three main components of that. One is weird stuff started happening with the phones. If any of you called Social Security last year you probably know weird stuff was happening. You'd call one Field Office, say there's one down the street from my House in Madison and if I called that Field Office I would get rerouted to Milwaukee, you'd get rerouted to someone that didn't have access to your case notes, that couldn't follow up, couldn't even verify things had been received. It just wasn't, you couldn't get help. Sometimes the phone would automatically disconnect. Sometimes there would be a weird busy signal. We tried to uncover what was going on and there was great reporting last year from New York Times and Washington Post and Pro Publica and all that. It got harder to get through on the phone. Two, the Field Offices started having really inconsistent policies, so at first DOGE said we'll close Field Offices and they didn't or then they said we'll move it online or you have to have an appointment but it wasn't clear what was happening and Field Offices started having ad hoc policies they were implementing so they weren't consistent. It was hard to get an appointment so our respondents started to describe this like I had a client who couldn't get through on the phone so they just went in person and then got turned away or they were told they had to make an appointment so they made this appointment and Social Security staff never showed up for the appointment so they're getting stuck in this loop. So that was phones, Field Office and now the third thing is all of this is underscored by staffing issues, right? So like Katie said at the beginning SSA undertook the largest staffing cut in its history, through incentivizing retirements, incentivizing people to leave the Federal workforce. And so we saw Field Office, our respond sent were talking about how Field Offices were decimated including the loss of contacts, people they knew that could move things forward so all of this meant that staffing was so far reduced and you need people to answer the phones. You need people to staff the Field Offices so those were the major frontline Customer Service impacts that we saw. KATIE SAVIN: I'll just add on a bit if that's all right. So we along side that saw that processing times at Social Security were slower every step of multiple processes, and now you all know it's never been quick and that's what again our respondents said, it's never been quick but we've never seen it this bad, things that usually didn't take so long like you submit your application for benefits and it needs to go to disability determination services to get a determination, and just that process of moving that paperwork to an examiner was taking months, so people were starting to say: This is a new problem here, just getting it over there. And we saw, say somebody was approved for benefits, moving into payment status, just getting that first check took months, much longer than it ever had before. We started seeing more denials, our respondents did, that we'd heard that people our respondents felt that examiners were incentivized to get through applications more quickly, that they were making more errors, that they were just handing back denials, with explanations that didn't make sense to them. And what was particularly challenging about these barriers is that they didn't feel they had anywhere they could go with it, in the past if there was some, as somebody said, if there was an a egregious error we knew what they could do. They could go to the regional office and talk to the Director. One of the agency cuts involved shrinking the regional offices from 10 to 4 and it became very difficult to access anyone they could escalate these issues to. And so we had actually, it was so striking to me, we had 6 different participants use the term "black hole" trying to describe what it was like to get to somebody in Social Security who could do something about these issues so we're not doing flat research but that's over 10% of our participants used that particular phrase which I think just expressed sort of the despair of the situation which came out a lot that this was a new type of problem, and a new they had new barriers to resolving the problems. And we talked to people who had been doing this work for decades and felt like, I no longer have the problem solving mechanisms that I used to have. SILVIA YEE: Thank you, Callie and Katie. I was just curious: Of the people you interviewed of the advocates and attorneys you interviewed, how long do you think on average have they worked in the field? Just as an approximation. KATIE SAVIN: That's a great question we could get the answer for because we didn't ask everybody how long and we didn't interview anyone who hadn't been there for at least a year because we wanted to make sure they had sufficient before experience to be able to compare. I would say on average, probably about 5 to 10 years, but it was really it varied quite a bit. We had people who had been doing it decades, we had people who were several years but for the most part people had been there probably prior to COVID and when people described changes they used those as comparisons, this is what it was like before DOGE, this is what it was like after COVID started. This is what it was like before COVID were some of the key ways people described evolution of Customer Service. SILVIA YEE: Thank you. I just wanted to really give people a sense of the weight of what they're saying when it's like, this is the worst I've ever seen. These are not advocates who just entered the field. These are advocates who have spent years working with Social Security. Going, let's see, I think, you know, I wanted to ask each of you then: Who do you feel, who was most impacted by these changes to SSA in 2025? CALLIE FREITAG: Silvia I'll start that by just saying what impacts looked like and I'll turn it over to Katie and Matt to talk about what subgroups of people were most impacted so we have this Section in our report that we titled, a quote from a respondent, the quote is: This woman is dying. So that and I want to just preface that, or foreground this conversation by saying that these Customer Service things, phones being rerouted, slow processing times, staffing issues, they sound really mundane and like frankly boring if you read about them in the newspaper. But you have to remember that these impacts are really important, because the impacts mean people don't get if someone doesn't get their, or if SSA doesn't pick up the phone or doesn't move an application forward, or if a payment is stuck in a payment center we had respondents telling us people were becoming homeless while they were waiting for SSA to respond to them. People were getting evicted, they were facing food insecurity and then there were people with real significant chronic illnesses or acute illnesses who were also just waiting, they're unhoused and just waiting on money to get them into a more stable situation. And so we, I just wanted to highlight and say, like, the impacts are so severe when SSA doesn't do its job in a timely way, and it's really a matter of life and death. KATIE SAVIN: Thanks, Callie and thanks for this question, Silvia. I think this was important and something that we spent a lot of time thinking about in our interviews and our data analysis, because when we think about, so, do you have administrative burden or barriers in interacting, citizens interacting with the State, we know that often the people who are most in need of public services will encounter the most barriers facing them. And we were curious if that would show up in this research. And we did find that, we saw that folks who had unstable housing, for example, who had lower technology literacy and access, all had trouble, had particular trouble as the agency shifted to this onlinefirst approach to Customer Service. There was a push to using these MySSA accounts in order to be able to engage with Social Security and do critical tasks, and those were presented a huge barrier. Almost all the respondents talked about those and the MySSA account barriers, because theoretically, right, those of us who are on this Webinar could probably have an email address to get this response and it has some familiarity but a lot of people who are receiving benefits don't have access to the internet at home. Don't necessarily have an email. And the way that MySSA verifies people's identity is through these series of questions such as, have you ever lived at this address? And it gives them a list of sort of similar addresses. Now, if you've moved 15 times in the last 10 years, and are managing multiple disabilities, it's very likely you don't remember all of those addresses, especially when they have those slight changes in them. So they would respondents described spending hours trying to help their clients just get through to them. We also found that people with different types of disabilities, like communication disabilities, really struggled when there was an introduction of AI chatbots, answering the phones, that folks who had speech disabilities were had particular trouble responding when the AI wasn't able to understand them. And that these technologies really were not tested with the disabled communities, and there were not, there was not enough forethought in how to ensure access, so this was part of why our respondents found they really were spending a huge amount of time helping some of their most vulnerable clients simply access contact with SSA. MATTHEW BORUS: Thanks, Katie and I can just add a little bit more to that. I wanted to mention, we heard a lot about the impact on immigrant Claimants or on people in mixed status families where there's a mix of immigration statuses. For instance, a child is a citizen and a parent who's undocumented might serve as a Representative Payee, and this is not uncommon but with the new Administration's attack on all immigrants, people were afraid that getting the benefits that helped the disabled family member would put the entire family at risk of being separated. We also heard of eligible immigrants being put through new and really unprecedented demands for paperwork that delayed their claims and I should mention that we conducted this research in 2025 but just within the past 6 weeks there was some reporting that Social Security has pushed some number of frontline workers to share appointment data with ICE which is really chilling. Another group that feels important to mention that we didn't hear as much were trans and gender nonconforming Claimants. One attorney told me that in the past if a judge misgendered his client he corrected the judge. He considered that a clean line and part of his duty as an advocate if a client wanted it but now in the face of such a hostile Administration he wasn't sure how best to advise his clients if they asked him what to do and when we spoke he was hoping to talk to other service providers although he thought they might be similarly unsure of how to navigate this added burden. You're muted. SILVIA YEE: I really like the sound of my voice so I'm constantly talking to myself. Thank you all for that answer. I have another question for you that will probably close out this Section but we do have a few minutes, we're going to take some Q&A after each Section actually the three sections? Our Webinar. So if you have questions for the researchers, questions, observations about the report, please put them into the Q&A where everyone can, which everyone has access to. You can be anonymous if you want and we'll just try to go through those as many as we can in the period after. I think the final question I'll ask you all is: What surprised each of you the most while you were working on the report? MATT BORUS: I can kick it off here and thank you for this question. And I have two main answers. The first is that, some of our respondents were getting surprises. A number of the people we talked with told us that SSA has become less predictable, more than one person we spoke with used the term making up rules. Another called it chaos. I want to share one of the quotes from the report where an attorney said, quote, it sometimes feels like you're dealing with someone that's like renting out jet skis, like they're make up their own rules, but there are rules because this is a government program. You don't get to actually just make up the rules and I think that really speaks to something important. Those of us who study bureaucracy know that there's always a measure of discretion and variability but there's also an expectation of being bound by certain rules and policies. And that's part of how advocates are effective, by developing the expertise to work within those rules. But that's harder when things are unpredictable. People were told that they could only speak for certain amounts of time on the phone. One manager at a Field Office said he was only to be contacted by fax. As Callie said earlier, the rules around walkins at Field Offices seemed to change and be inconsistently enforced and when that happens advocates had to ask how they were supposed to advise their clients on how to approach SSA. The second thing that we didn't expect that I'll mention here was the extent to which these barriers really impacted and stretched the capacity of the organizations we spoke with. Our initial focus was on how these changes impacted Claimants but we started to hear repeatedly about what it meant at an organizational level for disability advocacy groups for the other organizations doing this work every day. What used to be routine matters increasingly took more time and energy at earlier levels. We heard about how lawyers needed to be involved in areas that weren't thorny legal questions but just basic daytoday operations. One person said, we have to make four phone calls when we send one piece of paper to make sure it's received and processed and understood and interpreted in a way that helps the client and organizations tried to respond to this but the uncertainty made it different. When I asked one person if her agency was changing its practices she said to have practices you have to have consistent policy and the policies weren't consistent. Some folks tried to cover for the various possible challenges butt that took more work and more person power. A lawyer at a large legal services agency told us how he had to spend time prepping both a client and a social worker together to go to an SSA Field Office just to get a simple letter stating how much the client received in benefits. And for many agency this came down to a question of whether they could continue to serve as many clients because there are only so many hours in the day and that's a really horrible question to have to ask at a time when getting through SSA has become more difficult and as advocacy is more needed. CALLIE FREITAG: Yeah, Matt, thank you so much for that. We started calling that issue the jet skis problem, the making up rules problem, because that quote really landed with all of us. For me I mentioned this before but what surprised me is how impactful these very, what I consider mundane things are, like the business of good government is frankly boring, and, like, it should be, right? Making sure the phones work is not sexy work that gets you on the front page of "The New York Times." But it's really freaking important, right? Making sure that agencies are staffed and that appointments work and that people show up on time, managing people is hard. Managing organizations are hard. And but when they don't work, the impact like I said before are life and death. And so I really have started to appreciate the very boring work of bureaucracy, because when it works well, you don't Notice it, and when it works poorly, you do, and it really is very painful. KATIE SAVIN: And, yeah, I mean, I think I'll just add along the same lines of you know how Matt was mentioning we were originally thinking about the impacts on Claimants, but also came to think about the impacts on providers and organizations, I was really struck by the psychological impact on a lot of the providers that we talked to. People were really struggling with feeling a sense of despair, that what they typically do wasn't working. Somebody just said, somebody described saying, I feel like I have a gag order. It's really depressing. We up until this year had multiple ways to escalate a case. And somebody else said, I'm convinced there's a great big trash can underneath the fax machine even when they're doing electronic filings, electronic appeals, they just kind of disappear, and that image really stuck with me that, you know, you could just keep sending out faxes and they're just going into a trash can, but you don't really have a choice, except to keep sending them out and hope that someone catches them before they get into that trash can. And then I think maybe lastly, I was struck by the sentiment a few of our respondents shared of being, feeling like they were canaries in the coal mine here, that they were really just seeing the beginning, that the fact that the staff had been cut so dramatically, that processes were slowing, that this would all just continue to mount and I think in other metaphors, somebody said, the boot hasn't fully fallen, so the sense that things were really bad, as we're describing them as our respondents described to us. And that this is really an inflection point, we can decide from here is, are there things that the agency can do to be responsive to this research? Which they certainly have in the past and along the way in terms of seeing data and making changes and really fixing this so that the problems don't continue to compound and become an even greater crisis. So I think that really, that really struck me, that this is not where we are now, this is where we were in a moment in time, that things could really continue to get worse, or we could change something to try to improve them. SILVIA YEE: Thank you so much. I'm going to get at some of the Q&A that have come in. A number of them are specifically about advocating for clients and so forth and I might save that for Tracey, our next speaker. There's one here about how do you feel your findings should be used to inform the work of policy advocates in our government offices? KATIE SAVIN: So we did conclude our report with a series of 10 recommendations, and I think the numberone that we had that really underscored all of them was around staffing, that all of these issues in some ways for the most part can be tied back to not enough staffing, so advocating around the budget, advocating around staffing issues. And not just having more staff but also having staff do the work that they are hired to do. A number of staff were throughout the last year and ongoingly have been moved from their jobs doing something like examining applications or looking at requests for overpayment waivers, and have been moved to answer the 1800 number, where there has been a lot of public attention and the Commissioner has put a lot of effort into trying to improve those response times but that is then creating these other gaps. So having more staff and more training for staff and people doing the jobs they were hired to is I think a key point that people can be advocating for. And maybe just one, and I think also what we found is that our respondents are so enmeshed in this policy that they really knew when new policies wouldn't work. We saw policies throughout, we have a timeline in our report that I encourage you to check out and you can see that SSA would change a policy and then change it back, multiple times. And that really led to the sense of chaos and confusion at the agency and oftentimes it was the providers, the legal service providers, who do this work daily who could have predicted that so I think just continuing to open up these lines of communication to have Claimants and legal service workers continue to discuss and dialogue with the agency, right? We all know, we all agree I think that this is a system that needs help, that needs a policy change, and there can really be a lot of collaboration in moving forward and figuring out what needs to change for an effective policy on the ground. I imagine my coauthors might have other thoughts but I'll stop there. MATT BORUS: I can just say real quick I think that what Callie mentioned earlier of the sort of unsexy work of bureaucracy, being essential here is part of it because often what gets headlines are formal policy changes like we're changing eligibility standards or we're cutting X billion dollars from this program and those are obviously incredibly important but I think one of the things this report speaks to is also seeing the quieter ways that a program can be put through the ringer and effectively cut. SILVIA YEE: Right, what keeps things running is not sexy but . . . We're pretty close to the end of the time. I'm going to ask one more question, I think that really is directed at the researchers and someone asked: Beyond staff issues at the Field Offices, have you examined the impact of staff freezes at State agencies processing determinations? And later on near the end of this Webinar we'll be looking a little bit at the connections with Medicaid and HR1, which is the bill implementing cuts and work requirements to Medicaid. There are these connections to what to the work that states do and is that an area you're thinking of looking into? CALLIE FREITAG: I can just jump in and say this research didn't look at that. We certainly heard, one of the things that we did Code for was, like, related or compounding policy changes, but we didn't specifically look at that because we were so focused on what happened at SSA specifically in 2025 but I just wanted to flag that as an incredible research question. A great question for people to so if there's researchers on this call who want to run with that, please do it, feel free to reach out to us if you want to work on that. I will, like, the other thing I'll say that's really upsetting is that as part of DOGE's changes to the Social Security Administration, Katie alluded to this, research funding was completely cut. It was $15 million a year in independent federally funded research that provided again independent oversight to the $1.5 trillion of annual SSA spending so right now there's no research funding on SSA programs so this is a project that we did essentially for free, like, for very low cost. And this just means that those great questions like what's happening at states and how is that affecting SSA beneficiaries, we can't answer that question, unless we can find a way to do it for basically free. Or find a funder who's willing to do it. But with that said, many hands make light work so if you're a researcher, hit us up. SILVIA YEE: Thank you so much for your thoughts and for the work you've done on this report. And I am going to I'm going to transition to Tracey. Just before I introduce her, I'm going to put up another poll question for our folks, and that's the second one, which is asking about SSA barriers that people have encountered. And this question would be applicable to whether you work as an advocate, whether you are an SSA, enrolled in SSA or SSDI or are applying, as well. I'll just give a minute for folks to answer. You will all probably not be too surprised to see that we're the numbers are pretty high for encountering barriers, especially high for trying to reach SSA on the phone. Okay. So I'm going to share the poll now, and but I think you can just keep on answering, too. Oh, no, I can't no, I guess I have to end the poll before it can be shared. So interesting, this we've got a good handful of responses so I'm going to end it, and share the results. Lots of problems with reaching SSA on the phone. And many people have tried more than one of these options to try to reach SSA. And also lots of problems with trying to interact with the Social Security Administration online. Thank you all for participating in that. And hi, Tracey. TRACEY GRONNIGER: Hello. How are you? SILVIA YEE: I'm unhappy about what I'm hearing, but glad we're on this Webinar. Let me introduce you quickly. Tracey Gronniger is the Managing Director of Economic Security at Justice in Aging. She leads the organization efforts to ensure lowincome older adults can fulfill basic needs. Her team focuses on income based programs like Social Security and Supplemental Security Income, along with advocating for affordable housing solutions and tools to prevent eviction and homelessness among older adults. So there will be full her bios that we'll send out later in the package of information we send out and I'm just going to turn it over to Tracey and ask first how the report findings resonate with your work, and what you've been seeing in your organization. TRACEY GRONNIGER: Yeah, thank you. So I think that the report really highlighted to Callie and Katie and Matt's points how important relatively wellfunctioning the Social Security Administration is and how much the lack of sufficient funding right now has really hurt the people that SSA is supposed to serve and I think having this qualitative study that has actual stories so that we see what the outcomes are is really powerful, because those are the stories that make what we have been hearing some of more real. I think that it's hard when people say, and I think it's true, you know, SSA was never perfect. We never expected it to be perfect. But there were some things that we could expect to happen. You know, there was some standard of sort of a basic level of service even if things moved slowly or if it took appeals and people had issues. There was no question but we're seeing that things are just getting so much worse, and things are really breaking down. And that means that we're seeing a lot more harm to individuals that we're supposed to be helping and we're seeing a really serious breakdown of the system in ways that I think are going to be difficult to fix. I don't think they'll be fixable immediately, but there are breakdowns that are really substantial and serious and I think that this report really shows what that does and what the effect of that is. I think that we also, in a lot of ways, even though this is really unfortunate and it's really harmful to a lot of people, I think that we're also seeing where some of the gaps are and seeing in some ways having an opportunity to look at ways that we can decrease some of the barriers and create kind of smoother pathways for people to access benefits, because we're seeing the harm and we know that it's not going to be fixed immediately and so we have to think strategically about how we're going to provide some relief or do some things. You know, you can't suddenly hire 1,000 people and train them and they know everything and they're going to fix the entire system. That's just not the way that it's going to go but we do know that we can begin hiring more people. We know that there are opportunities to create other processes. We know that there are things that can be done and I think that using the report and looking at the harms that are actually occurring, there is some opportunity here to make more significant changes that may have a bigger and more kind of a bigger effect on how people are able to access benefits. And keep them. SILVIA YEE: Right. Thank you, Tracey. Having read the report, what do you think are the top 3 to 5 changes that you think is needed to materially improve how SSI or SSDI beneficiaries can apply for and keep their critical income supports? TRACEY GRONNIGER: Right, right. I think to Katie's point, the staffing is just critical. I think we have to acknowledge that it takes actual people to make this work, and I love efficiency, and I'm not against online access, I think that's great, or online systems that have been vetted properly without people being used as sort of guinea pigs before they've been properly analyzed and put together but it takes people, and I think we're seeing now that there aren't enough people. There isn't enough staff and people are being shuffled around into jobs that they don't have the experience doing. I think that causes a lot of anxiety within the agency, so you're having the people who are the potential beneficiaries and recipients of these benefits trying to get access and you have the people who are trying to do their jobs and trying to give them that access who can't perform the role, because it's just overwhelming and too much. So I think that's definitely one of the top changes that we need to see and we need to do it as quickly as possible, because it does take time for people to learn what they need to know to help potential beneficiaries and applicants. I think another big category of change is just making the whole process of applying for and keeping benefits easier, and really removing some of the unnecessary I would say barriers that make SSI and SSDI as a program more complicated than it needs to be, and I think part of making these processes easier is admitting that some of them are really the result of racism, paternalism, sexism. We've put up these, we make people jump through hoops because we decide that they're not as deserving or we think that they need to prove that they deserve access to basic help and basic care and I don't think that we can address some of those problems unless we acknowledge that we created them and we put them in place for not really legitimate reasons. The fact that you're telling people that they have to fill out a 20page application to get SSI, even though you know that they, some of them you have the sense they're already eligible or you can figure out information in a more efficient way, we're creating these obstacles that are a little ridiculous and then on the other hand we'll have people filing for tax refunds who are in the top something percent bracket, wealth bracket and it's so easy and simple, so easy to get money that you don't necessarily need but for people who are trying to pay for housing or food or medicine or transportation, here are all these barriers. I think we need to get rid of those. I think another way we can make this easier and sort of this streamlining idea is changing the rules around eligibility and updating some of the program rules that exist now. So for example people shouldn't have to document the minutiae of their lives on a monthly basis and say I have $1,995 in the bank and then I can get my benefit, if someone gives me a couple hundred dollars of I somehow am able to collect save more money I have to worry about losing my benefits. That doesn't really make senses specially for this population that is really struggling to make ends meet. I veer into kind of the policy side of legislation, like, the SSI Restoration Act which would make changes that would modernize the program, and do things like raise the asset limit from $2,000 for an individual and $3,000 for a couple, to $10,000 for an individual, and $20,000 for a couple. That makes a lot of sense both on the side of the recipients, and also for SSA, because the Administration of that kind of really detailed kind of monitoring is extra work, and the fact that we're putting this extra work on staff that then leads to overpayments or other sort of things that they have to then follow up on, means that they can't turn to work like making sure that people are able to access their benefits. And so we want to make sure that we're not creating those kinds of barriers for individuals. Similarly, things like the income disregards, currently if you receive more than $20 per month in income, that reduces your SSI benefit, and no one in 2026 thinks that $20 is enough to start reducing benefits for people who are already receiving kind of belowpovertylevel income on a monthly basis. So those kinds of things I think would make a big difference in terms of allowing people to access their benefits and allowing them to keep the benefits and hopefully reducing some of that workload for SSA, as well. SILVIA YEE: Thank you so much. For those thoughtful responses. Just thinking that we have this research from 2025, what do you anticipate will be the outcome if the Bureau does not make changes? TRACEY GRONNIGER: Yeah. I mean, I think that we are really seeing the decline of sort of a trust in government, and an ability for us to provide support and help to the people who need it most, and I think we're going to see people who are, you know, becoming homeless, who are dying, whose families are also affected. You know, this isn't just about the recipient of the benefit themselves. It's all the people within their families, within their communities, and having that breakdown of the ability of SSA and the ability of the government to do what it's been tasked to do, and what it says that it will do is really harmful. And I think with SSA, we did see in the past, you know, year and change, we've seen people so surprised and really kind of fearful of what it means that SSA is not it doesn't appear to be able to do the job that it is supposed to do. The American public loves Social Security, and it's a really important benefit for so many people. And I don't think that we, as a society, and definitely within Congress, have appreciated how important it is, and how much people both rely on it and expect it to be there, even though we have some of those "nothing's perfect" feelings, I think we really need to step up and I think Congress needs to step up because we're going to see a lot more harm if we don't do anything. SILVIA YEE: Right. Thank you so much for being with us. I have, I'm just going to try to raise one or two questions that came up that people did put questions in the Q&A, and also when people registered, there were questions, and I'm going to pick one of them because I thought it was an interesting one, moderator's privilege I guess. The question was: Can we address the massive wage gap compared to nondisabled men that Social Security recipients have? And Social Security often winds up providing smaller benefits to women due to lower lifetime earnings. And it assesses daily living tasks that women are socially conditioned to manage despite having disabilities. TRACEY GRONNIGER: Yeah, that's a really thoughtful question, and I love it because it is also a policy question, because we know that on average, women do receive lower benefits than men, both in retirement and disability. And part of that is because of the wage gap, so women making kind of less than men overall, also the way that Social Security is set up, it looks at the highest 35 years of wages, and so for women who have taken time out of the workforce for care giving, that means that their actual Social Security benefit is reduced. Add on top of that for women who are experiencing disabilities or they're going through things that are perhaps going unacknowledged because they are to the questioner's point, used to some of the things that they're dealing with, for people who don't apply for disability benefits and instead take early retirement, or try to figure out other ways to sort of get by, that's another thing that's lowering their benefits. Claiming early retirement can mean as much as a 30% reduction in your benefits and so for people who are having difficulty accessing SSDI, that's just another road block that then women are facing, that means that they don't get the same amount of benefit that they would otherwise receive. And there are policy proposals around providing credits for caregiving so that women are not just providing, you know, billions, hundreds of billions of dollars, I think I saw there was an AARP report that says there's like a trillion dollars worth of unpaid caregiving in this country so we can make policy choices that acknowledge that role, that caregivers are playing and also provide a benefit so that then they're not aging into poverty or having to live with less in resources because they've taken on that role. SILVIA YEE: Right yes thank you so much. One quick final question I thought was interesting in the Q&A: Is there an agency that is responsible for auditing SSA's efficiency where this information might be more quantitative and highlighted at the Federal level? TRACEY GRONNIGER: So this is a really good question because we have seen Inspector Generals and really office of the Inspector General is where you would expect to see people looking at what's going on, what are some of the metrics, how are things functioning, what are ways that we can improve on what's happening within an agency, and we've seen Inspector Generals' offices being decreased. People like the work they're doing, not necessarily being as robust. There was a report I think in the Washington Post that talked about some of the way that Inspector Generals have not been able to fully report on what's been going on within government agencies so I think one of the other things that people should be advocating for is making sure that we have robust Inspector Generals' offices and robust information and data, to Katie and Matt and Callie's point making sure that we have research, independent research, going on so that we can see what the actual issues are and see what's actually going on and not hear what could be just the rosy view of how things are going. SILVIA YEE: Thank you so much, Tracey. It's great that you joined us. And maybe just before you go, you can let us know about a Webinar that will be coming up next Tuesday. TRACEY GRONNIGER: Yes, absolutely, so I did not talk at all about sort of the strategies for advocates who are trying to deal with all of these issues and navigating what's going on right now with the Social Security Administration, but on Tuesday, next week on the 14th, Justice in Aging is hosting a Webinar that is specifically going to discuss: How do you deal with what's going on at SSA right now, as advocacy advocates? And what are some of the practical ways that you can get things done for your clients? And that's happening on the 14th at 11:00 a.m. Pacific, 2:00 p.m. Eastern. I'm sure we will put a link so people can register. But that should be a really great Webinar and I think even a person or two from here will be on that, as well. SILVIA YEE: Yes. Thanks, Tracey. I did put a link to the registration in the Q&A, and it is here, too, that Katie just put it in the Chat. So I'm going to turn to our speaker, Maria Town, who is with us. Hi, Maria, and introduce her, as we focus in a little bit more on disability. Maria Town is the and the disability community. We have been talking about disability all along with SSI and SSDI. Maria Town is the President and CEO of the American Association of People With Disabilities, and they are cohosting the report with DREDF. In this role Maria works to increase the political and economic power of people with disabilities. Prior to being at AAPD she served as the Director of the City of Houston's Mayor's Office for People With Disabilities where she advocated for the rights and needs of citizens with disabilities. Served as a liaison between the Mayor, City Council, City Departments, and other public and private entities on matters pertaining to people with disabilities in Houston. And I've always thought that Maria's base in sort of a local, the real needs of people at a local level, in the city of Houston, has grounded so much of her work and her policy, her policy knowledge. And again, fuller bios will be in the materials that we send out, but welcome, and so glad to have you with us, Maria. Let me open by asking you I'm sorry, I just went past where I wanted to be. Just noting that the there are almost 13 million people as of 2021 were eligible for Medicaid or Medicare because they received SSDI or SSI. About 1/3 of this group actually qualifies for both Medicare and Medicaid while almost 5 million SSI beneficiaries have only Medicaid coverage and the rest have Medicare only. So I guess the question for you is to help explain to us like for most people who become eligible, becoming eligible oh yes sorry, can you tell us more about the connection between Social Security and Medicaid and Medicare eligibility? MARIA TOWN: Certainly Silvia, and thank you so much to DREDF for having me and for your collaboration on this Webinar and on this report. I just want to express my gratitude to the work of the researchers behind this report for everything they've done. Not in my bio, but I just whenever I talk about this subject I always want people to know I formerly relied on SSI and Medicaid, and many people in my family continue to rely either on Social Security Retirement Benefits, or SSI and SSDI, and so this is not just an issue I think about from a kind of broad policy lens, but, like, actively worry about every day for my friends and my family. So for SSI, SSI is often an automatic opening to Medicaid eligibility. In 39 states, if you become eligible and begin receiving SSI you're automatically eligible and begin receiving Medicaid. Again this isn't necessarily true in 11 other states that will make you go through an additional process to get access to Medicaid, but even in those statements having SSI eligibility makes getting Medicaid easier. Medicaid is the primary payer for longterm services and supports in the United States. The vast majority of other insurers do not cover these services at all. For older adults, the Social Security Administration plays a significant role in determination Medicare eligibility, so people who are 65 and older sign up for Medicare Part A and Part B via the Social Security Administration. And so when we see these attacks on the infrastructure of SSA itself that is ultimately an attack on health care and an attack on disabled peoples and older adults' ability to meet their needs so even for folks who are already receiving these services and supports whether it's SSI, SSDI, Medicaid or Medicare, if they experience any issues with their benefits while they're already on these programs the lack of staffing, the reductions in service on phone lines, the closures of Field Offices, will mean that it is harder for them to correct issues and they lose access to health care. And Silvia we can talk about implications in HR1 for SSI and SSDI recipients later but I do want us to talk about that. For younger people with disabilities who receive SSDI specifically, they can qualify for Medicare after a two year waiting period. People who are on SSDI again may also qualify for Medicaid and Medicaid can be an important source of health care and support during this waiting period. There are a couple of exceptions to this waiting period, people will ALS have ultimately eligibility if they receive SSDI and people with early stage renal disease have a three year waiting period but for most people it's been two years. There have been many attempts by the disability community and others to reduce the waiting period. There's a bill called the Stop the Wait Act that would get rid of this twoyear waiting period so people can access the health care they need to survive. SILVIA YEE: Thank you, that's great. SSA is such an important income support for many people with disabilities and yet there's some really significant limitations to that support such as the asset limits and Tracey shared with us about the SSI Savings Penalty Elimination Act. Would you like to share a little bit more about what AAPD is doing on that? MARIA TOWN: So the SSI Savings Penalty Elimination Act is a bill that would increase the SSI Substantial Gainful Activity limit or asset limit to $10,000 for an individual, $20,000 for a couple, and allow people with disabilities who receive SSI to save more towards their futures, towards their goals to put money away for a rainy day. And it also ties the asset limit to inflation which is really important because it means that we don't have to do all of this all over again in a few years as inflation continues to rise. The asset limit has not been updated for SSI in 40 years. So longer than I've been alive. And so this is one of AAPD's top legislative priorities this year and has been for a few years, this bill has significant amounts of bipartisan support in both the House and the Senate and so bipartisan bicameral support which is really important. So I think Congress is deeply frustrating but I do have hope that this bill can actually pass. And we need people to be contacting their legislators to get them as cosponsors on this bill or if they're already cosponsoring, making sure that they are talking to their peers about how important this is and about how people with disabilities should not get trapped into poverty and be discouraged, actively discouraged, from working or be denied opportunities to get married, for example, because they need to access SSI and Medicaid. So AAPD actually has an action alert. AAPD.com/action, that allows you to easily contact your Congressperson or Senator to encourage them to support the SSI Savings Penalty Elimination Act. SILVIA YEE: Thank you, Maria. I think that will be interesting to a lot of people on the Webinar and then you allowed to sort of the barriers to Medicaid that have been put into place under the Trump Administration with HR1, the one big beautiful Act and one of the exemptions to those on Medicaid who would otherwise have to fulfill work requirements is being on SSI or SSDI. So what are the implications of this report for people who might otherwise be able to rely on that exemption? MARIA TOWN: So to add some context to what Silvia mentioned, HR1 or the One Big Beautiful Bill Act, cuts around a trillion dollars out of Medicaid, the largest cuts in Medicaid's history. And a couple of the ways that those cuts happen are by imposing work requirements and 6month redeterminations on some Medicaid recipients. For work requirements specifically, there is language in the bill that exempts people who receive SSI and people who receive SSDI from these work requirements, and that's a good thing, right? It's not enough at all. And part of the reason it's not enough is because again, how will folks who are on SSI or SSDI navigate the administrative burden of proving that they're on these programs so that they remain connected to their health care? Again, what if the agency, and this isn't this will happen, it's not even a big whatif, but what if the agency has an administrative processing error, and erroneously eliminates some people from the program because again of administrative errors or a technical issue? These things happen all of the time. That would mean that individuals again would lose their health care coverage. With COVID particularly, disability, the rates of disability in the United States are growing. More and more people will need access to SSI, SSDI and Medicaid in the future and if the agency's capacity to process new benefits applications is hindered because of these because of these changes and because of these attacks, ultimately it will mean that more people will lose access to their health care, because they will not be able to become exempt from these work requirements. And many, many people will fall through the cracks. Does that answer your question, Silvia? SILVIA YEE: Yes. It does, and I think it's really important to think through for states, really, and for advocates working with states. MARIA TOWN: Yes. SILVIA YEE: On the implementation of HR1 requirements, to say that the State has to, they can't just rely, oh, people will be fine. They're on SSI, SSDI and there won't be a problem, that's fine. Not when there are so many delays. MARIA TOWN: That's right. SILVIA YEE: to getting actually, to getting on to SSI or SSDI, not when there are so many of these random problems and barriers that are coming up and it takes so long to work through them with SSA so that's just MARIA TOWN: We know from examples in Georgia and Arizona that when states implement these things like work requirements where they are placing these huge administrative burdens on individual disabled people, administrative burdens we're already navigating so many administrative burdens to get on and maintain access to SSI and Medicaid already, that people will lose access to their health care because they can't get the right documents in on time, or because they moved and their mail didn't get to them on time. So with states, I just want to talk about a timeline here. The bill passed in July of last year, and we have seen both the Federal Government and State governments kind of gearing up to implement these new changes. Now the tricky thing is, we don't actually know yet how all of these changes are going to work, so I want everybody on this Webinar to really be paying attention in June to what the Centers for Medicaid and Medicare Services do, because they will be issuing what's called an interim final rule on how the Medicaid work requirements and redeterminations will need to work. And states will then have to begin figuring out how they are going to implement that final rule between June and January of next year. States will have to notify Medicaid recipients about these new requirements by September of this year. And this is a really quick timeline, but there are things that people and organizations can do to try to prevent harm and to push back on these changes. States can make exemptions as broad as possible, so that as many people as possible can remain connected to their health care. CMS and SSA could work together to ensure automatically that people who receive SSI and SSDI don't have to navigate any additional administrative burden to keep their Medicaid, right? What a dream! And it should be so easy to get these systems to talk to one another and that's one of the things that AAPD is pushing at the Federal level with these agencies. We need people reaching out to their State Medicaid Directors, talking to them about the need to make information accessible in a variety of language formats, in plain language with visual communication so that people can understand what they will need to do to basically protect themselves and maintain access to their health care. SILVIA YEE: Thank you, Maria. Thank you so much for bringing your knowledge and expertise here. There are some the panelists have been doing a fantastic job of trying to address some of the questions in Q&A. There is one question from the registration form that I wanted to just ask you quickly. Under this Administration, Social Security in general is in extreme peril. Do we just ride it out? Do we minimize, mitigate as much damage as possible and go for November? MARIA TOWN: So I love this question and again I want to emphasize: Folks need to be contacting their governors, their State Medicaid Directors, to encourage them to make these exemptions to work requirement redeterminations as broad as possible. But in terms of Social Security specifically, your members of Congress need to know how the changes in Social Security are affecting you. There is a whole working group in both the Senate and the House trying to protect the integrity of this vital agency, that is really essential for so many Americans. And I feel like this is often a, it sounds kind of trite as a talking point, but stories really do have power, and at AAPD, we receive regular outreach from members of Congress and Senators asking about stories, and how people are being impacted. So stay in touch with your representatives. Even if you're not asking them to support a specific bill, tell them about your experiences. Tell them about the experiences of your family and friends. And I have to say that votes do have power, and I'm not saying this in a partisan way at all. AAPD runs a voting campaign called REV UP, which stands for Register, Educate, Vote, Use Your Power. We have Coalitions across the country in 22 states and a presence in 48 states. REV UP coalitions often do things like host disability Candidate Forums and events like that are great opportunities to get candidates of all parties on the record about what they will do to protect Social Security, to protect Social Security benefits, to restore the agency itself, and how they will improve these programs. REV UP Coalitions and partners also send out nonpartisan candidate surveys and the issues within those surveys are built by the local Coalitions. So the input from members is directly connected to whatever issue is most important to disabled folks in Nebraska, or in Maryland where I live and so I hope you'll consider getting involved in REV UP. Our next national call is April 22nd, from 1:00 to 3:00 p.m. Eastern standard time. ASL and CART are provided and we're happy to accommodate any other access needs that may exist. SILVIA YEE: Thank you, Maria, that leads directly, we're very close to the end of the Webinar. I have one question for everyone, and now I'll put a poll in so everyone can think a little bit about it. You've essentially answered that question, which is: What can individual people with disabilities who are on SSI or involved with the agency, what can they do about these issues? So I'll just go to that very last poll about SSI and health care, the poll question. I'll read it out as well, it's a simple poll, simple yes or no. And I'll ask Ally to put that up. MARIA TOWN: I want to shout out something I see in the chat from Rajai Saleh who says we're involved with REV UP in Ohio. We're hosting a Forum in August. So you see power in action. SILVIA YEE: That's great. So the final poll is just, have you experienced a loss of or delay in health care coverage that is related to a problem with getting or keeping your SSI or SSDI? Just a yes or no. And I'll just give a few seconds for this and we'll go to our panelists. Thank you everyone for joining us. We will be sending out a package, maybe by the end of the week or possibly early next week that will have the link to the report, will have additional resources, will have fuller bios for our panelists will also have the Executive summary of the report in a plain language version and anything else useful we can think to throw in there for you all. I'm going to end the poll. It looks like 40% of people said they have experienced a loss or delay and 60% said they have not. I will also note there was someone in the Q&A who have said they never had any problem getting in touch with SS A and I really appreciate hearing that, that you exist gives me hope. So I will turn it over to everyone, that final question what can individual people affected by SSI do? TRACEY GRONNIGER: I would reiterate talking to your members of Congress. We hear that members of Congress don't think people care or not paying attention so they vote on other issues or they prioritize other bills or other programs so hearing from their constituents that this is an important issue is really critical and I think it really makes a difference. KATIE SAVIN: I would add on in addition to voting, talking to your members of Congress, I think you can tell your story to so many people in the community and have it be impactful. You can talk to reporters. You can talk to researchers. We put a link in the chat earlier on in case folks have stories they want to share that we can connect you with people who are looking for them. Really, your stories are so powerful and often are not heard enough by people who are making decisions so, yeah, just being able to connect and share your story would be really powerful. CALLIE FREITAG: I'll jump in and say don't be afraid to be annoying about it. Call your Congress people all the time. Like, think of the most annoying person in your life, and beat them at it, right? Be really annoying and call all the time. And get your friends, your people, to call too and get into community also. Like, we do this together. We don't do it alone. You can do things individually but it's always better with others. MATT BORUS: The one last thing I would to that is that politicians will talk a lot about Social Security and they often use it just to mean the retirement programs and I think that those are opportunities to be like: Yeah, and SSI and SSDI are critical. Like, don't let them talk about it in a way that overlooks the disability programs, because they're so important. SILVIA YEE: Thank you so much, everyone. You've all been such great advocates for the program, and for the importance of it in people's lives. I would really just encourage people to tell your individual stories, share with Congress, yes. Share with press. Make the impact of these barriers known, and make the importance of SSI and SSDI known. Thank you so much. Oh, I'm sorry, Maria? MARIA TOWN: I want to add one thing: A lot of people will get they will think this is too technical for me, and one thing that we can all do to help save these programs, protect and improve these programs, is make them human. This is about policy. This is about services and support. But ultimately at the end of the day, it is about dignity, and it is about being able to determine our own lives. And so if you're telling your story, if you're talking to your neighbors, if you're talking to the press, don't get worried about getting caught up in the specifics or the technical questions. Center your humanity and the humanity of other people who rely on these programs. SILVIA YEE: Bravo. So thank you everyone. We're at the end we've had a request for the REV UP call link, so I'll just keep this going and if that can be added, Mary Yeah, or if you can add that in that would be great and then we will formally end. Thank you for doing the work, Matt and Callie and Katie. CALLIE FREITAG: Thank you for having us. It was an honor to share our work and thank you for being here and being so engaged. MATT BORUS: Seriously. KATIE SAVIN: Yes, thank you so much. Be in touch. [End of transcript]