You Shouldn’t Need a Law Degree to Access Disability Benefits

Rebecca talks to Matthew Cortland, Bethany Lilly, and Beverly Yu about how America’s social insurance and public assistance system is falling short for disabled people and care workers who provide home and community based care services. Subscribe to Off-Kilter on iTunes.

Earlier this week, Rebecca moderated a panel discussion at the National Academy of Social Insurance conference on “Pathways to Economic Security” about how America’s social insurance and public assistance system is falling short for disabled people and care workers who provide home and community based care services; the human consequences of how hard we’ve made it to access Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI); outdated program rules that trap disabled people in poverty and keep them from marrying; the “care crisis” that’s resulted from underpaying and undervaluing direct care providers; and more.

We at Off-Kilter are excited to bring you that conversation for this week’s podcast, with thanks to our friends at the National Academy of Social Insurance for letting us share it with our listeners.

This week’s guests:

• Matthew Cortland, policy director of Be A Hero and a former SSI recipient (@mattbc)
• Bethany Lilly, director of income policy at The Arc of the United States (@bethanylilly)
• Beverly Yu, state government affairs director of United Domestic Workers/AFSCME Local 3930 (@UDW)

TRANSCRIPT:

♪ I work and get paid like minimum wage Sights to hit the clock by the end of the day Hot from downtown into the hood where I slave The only place I can afford ’cause my block ain’t safe I spend most of my time working, tryna bring in the dough…. ♪

REBECCA VALLAS (HOST): Welcome to Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by the Center for American Progress Action Fund. I’m Rebecca Vallas. This week for the pod, we’re bringing you a conversation I moderated as part of this week’s National Academy of Social Insurance Conference on “Pathways to Economic Security.” The panel looked at the ways our social insurance and public assistance system has been falling short for disabled people, as well as direct care workers who provide home and community-based care services. The panelists you’ll hear from are Bethany Lilly, director of income policy at The Arc of the United States, Matthew Cortland, policy director at Be a Hero and a former SSI recipient who’s a longtime friend of the show, and Beverly Yu, state government affairs director at UDW/AFSCMI Local 3390. UDW is the United Domestic Workers, a union that represents care workers. Let’s take a listen.

Welcome back to Pathways to Economic Security, hosted by the National Academy of Social Insurance. I’m Rebecca Vallas. I’m a senior fellow at the Center for American Progress and the host of the weekly podcast Off-Kilter about poverty, inequality, and everything they intersect with. And I’m proud to currently serve as secretary of the Academy’s Board of Directors.

As COVID-19 continues to trigger unprecedented economic turmoil, the pandemic has laid bare myriad public policy failures that long predate the spread of the virus: from a broken healthcare system to a woefully outdated unemployment insurance system to an economy where nearly half of U.S. residents were struggling to afford basics like food, housing, and healthcare even prior to COVID-19.

One of the groups who’s seeing outsized hardship in this moment because of not only heightened medical vulnerability, but also disproportionate levels of economic insecurity, is the one in four Americans with disabilities and their families. People with disabilities were facing poverty rates two to three times higher than non-disabled people prior to COVID-19.

Meanwhile, our public policy choices are a big part of why. For example, because of outdated program rules in the Supplemental Security Income, or SSI, program, many people with disabilities face asset limits that prohibit them from having even modest rainy day savings to weather an unexpected crisis. And now it’s raining. What’s more, we’ve made critical income security programs for disabled people incredibly hard to access and navigate, while systematically underfunding outreach efforts and community programs that help people apply for needed benefits. Case in point, the Social Security Administration just last week reported that January 2021 saw the lowest number of new SSI awards per capita in the program’s history, continuing a deeply concerning trend in an income security program that should be helping more people, not fewer in a moment with such high levels of economic hardship.

On the flip side of the coin, and another critical part of today’s conversation, is our direct care workforce, a group of workers who have always been essential and perhaps never more so than now, yet who, in many cases, have not only lacked the protective equipment that they need to keep them safe during the pandemic, but who have also been paid, in many cases, poverty wages and deprived of basic protections like paid sick days.

As the Academy’s conference on “Pathways to Economic Security” continues, I’m honored to have the privilege of moderating the next conversation, which will take a look at how well we’re doing as a nation when it comes to ensuring basic income security for people with disabilities, as well as the picture for direct care workers, key lessons from the pandemic, and the policy agenda we need to ensure economic security and dignity for both groups as policymakers work to build back better.

We’ve got an incredible panel lined up for you. Matthew Cortland is the policy director of Be A Hero and someone who has himself been helped by SSI bringing in incredibly valuable perspective to this conversation. Bethany Lilly is the senior director of income security at The Arc of the United States, also one of the co-chairs of the Consortium for Citizens with Disabilities Social Security Task Force. And Beverly Yu is the state government affairs director of UDW/AFSCME Local 3930. United Domestic Workers, or UDW, is a union that represents care workers. Matthew, Bethany, and Beverly, thank you so much for joining The Academy for this discussion.

MATTHEW CORTLAND: Thank you.

BEVERLY YU: Happy to be here. Thanks to The Academy.

BETHANY LILLY: Thanks so much, Rebecca.

VALLAS: And we’ll kick it off because I wish I had all day with you guys. We only have about 35 minutes before we have to break out for Q&A, so we’re going to dive right in. And Bethany, I’m going to start with you. To kick us off, I’m going to ask you to paint a picture of the policy landscape when it comes to income security for people who are unable to do substantial work because of a disability. A lot of your work focuses on the two main income security programs that we have in the U.S. for people with disabilities: Social Security Disability Insurance and Supplemental Security Income, which I mentioned up top. Talk a little bit about how these programs work and who they help and who they don’t help.

LILLY: In a lot of ways, SSI and SSDI are designed to be complementary programs because SSI is the means-tested version of the program. It is something that captures everyone who doesn’t quite meet the standards in SSDI. And I don’t mean disability standards. I mean income standards [laughs] or work history. And so, SSDI is a program based on your work history. If you’ve paid into the system, and then you develop a disability that limits your work, you can apply. It takes, most of the time, years to go through this process. And it is a very thorough review of your medical records. There are a lot of steps, and if there were more lawyers, I might get into that. But I think these lawyers have it pretty well covered. And so, it can be incredibly hard to get through this process. But if you get through it, you’re eligible for an income support benefit. You’re also, and this is crucially important for people with disabilities, eligible for Medicare. There are things that I’m sure we’ll get into later, like waiting periods that interfere with that, but by and large, you’re eligible for SSDI and Medicare. And those two things together come together to support you when you’re not able to work at a substantial level. Now, if you don’t have that work record or you don’t, for other reasons, aren’t eligible for SSDI, you may be eligible for SSI. SSI has a lot more strict rules when it comes to how many resources you can have. The asset limits that Rebecca mentioned earlier are incredibly low. Right now they’re set at $2,000, and you actually get penalized if you get married. You lose part of the assets that you were originally allowed to keep. It goes for a couple to [$3,500] dollars. So, you’re losing about $500 there. And SSI benefits when they pay out are incredibly, incredibly low. The highest benefit that anyone could conceivably get in 2021 is $794. But on average, the benefits are quite low, much lower than that. In 2019, that was $551 a month for adult beneficiaries. Children get a little bit more. And I think that’s an important thing to keep in mind about SSI, is that you have a lot of kids who are eligible for SSI. They have disabilities that meet the stricter standards that we have. But they’re getting this extra cash because they have disabilities, and there are a lot of costs that come with that. And equally importantly, if you’re eligible for SSI, you’re eligible for Medicaid. And for people with disabilities in this country, Medicaid is one of the few, few healthcare programs that actually covers the services that many people need. I represent people with intellectual and developmental disabilities, and our kids aren’t going to get the supports they need from traditional private health insurance. Medicaid is there to kind of fill that gap and make sure that people are getting the services they need. Medicaid’s great. There are also some issues with Medicaid! And I’m sure we’ll get into that going forward. But other things that you should know about SSI and SSDI is that they don’t cover everyone with a disability. I mentioned the standard is incredibly strict, and Rebecca mentioned that one in four people in the U.S. have a disability. I’m one of them, and I don’t qualify for either of these programs. Many people don’t. Many of the lowest-income people with disabilities do qualify for other programs, though, and I think it’s important to keep that in mind when we’re thinking systemically about services that help people with disabilities. Many qualify for supplemental nutrition assistance. Many of them qualify for Medicaid in other ways, not through SSI. The Medicaid expansion is actually one of the biggest developments for people with disabilities in the past several decades. I’d say the ACA, with the pre-existing condition protections in the expansion was probably the biggest piece of disability rights legislation we’ve had in decades. Well, since the ADA, so I guess it’s not quite decades. But those things, I think, are really important to keep in mind, as are the limitations that are placed on those programs. Because even if you’re eligible for SDDI, which, as I said, doesn’t have the same asset or income limits, you’re not going to necessarily be able to save a good deal of money if you also rely on SNAP or you also rely on Medicaid. Dual eligibles, folks who are eligible for both SSI and for SSDI, often run into issues around asset limits or access to Medicaid, and it can be fairly complicated. So, I think we have a system. It’s great. We have two major programs, but unfortunately, there are a fair number of gaps and issues with those programs.

VALLAS: And Bethany, before we move on — and we are definitely going to get into some of those gaps, because this is going to be a conversation that also very much gets into the policy solutions that we need, some of which we might have opportunities in this moment to actually see some progress on — explain that disability standard, which you referred to before as being very strict. I’ve seen the OECD, the Organisation for Economic Cooperation and Development, describe the American disability standard that Social Security uses as one of the strictest standards in the entire developed world. The way that they rank countries, to make it even stricter, we would have to model ourselves on North Korea. Tell me what the disability standard is and how it actually gets applied.

LILLY: Sure. So, as I said earlier, there’s a very long application process. And I actually think you, Rebecca, do a much better job of summarizing all of the different steps involved. But you start off by submitting an application to the Social Security Administration. And you have to prove that you have a very substantial disability that interferes with your ability to work. And that comes down to your medical records, which are closely, closely examined by the Social Security Administration, and they’re compared to things called listings. And then if you don’t meet an exact medical profile from the listing, you then can go through additional steps. I mentioned that this process takes years. One of those steps is assessing whether or not you meet a substantial gainful activity level of work. And that particular step is you cannot make any more than the number in 2021, I think, is $1,200, but Matt and Vallas can correct me on that. And that means basically, you can’t make any more than that amount of money ever. There are exceptions if you have a different type of disability. If you have vision impairments or blindness, you have a higher rate. That’s actually something that is a bit of a historical quirk. I’ve read several reports that don’t distinguish between people with different types of disabilities. They all have the same kinds of limitations. But this is an incredibly strict standard. SSI standard is very similar. Children’s standards are a little bit different, look much more closely at that functional kind of healthcare: How does your disability interfere with your ability to function in other ways? And so, but to your point, I think what people need to know is that it’s the most, one of the most strict standards in the world.

VALLAS: And that’s a great segue into bringing Matt into this conversation as you start to describe the steps and what it’s like to actually access the programs. Matt, I mentioned up top that in addition to being a policy expert on these programs, and also a disability lawyer who’s helped countless people navigate the application process yourself, you’ve also had direct experience as an SSI recipient. So, you’ve really seen this system from multiple sides. And as Bethany was describing, and something that I certainly saw firsthand as a legal aid lawyer who used to represent people who were wrongfully denied Social Security Disability benefits, the gaps really aren’t just about people who aren’t eligible for disability benefits. “Falling through the cracks” is kind of the metaphor that always gets used. It’s also about how difficult the programs are to access. And I mentioned up top the really disturbing data showing that SSI awards in January 2021 are now at historic lows per capita at a time where we would expect more and more people to be helped by this program. And of course, this isn’t something that’s unique to SSDI and to SSI, but it really does feel like these programs are kind of the poster children of how difficult it can be to access basic assistance in this country. Talk about the process of qualifying for disability benefits and what I mean when I’m describing that even eligible people end up falling through those proverbial cracks because of red tape, especially if they can’t afford a lawyer to help.

CORTLAND: Absolutely. And you’re right: We tend to talk about people falling through the cracks. But I really hate that analogy because it implies that the system is designed to catch people, and it’s not. It implies that there are these marginal changes we can make so that people stop falling through the cracks. But really, the system isn’t designed to catch disabled folks who are eligible. The system is really designed to reject people who are eligible and those who aren’t. But it really does err on the side of rejecting people who are eligible. When I applied for SSI, I had five years of graduate education that were relevant: three years in law school, two years in public health school. I put as much effort, energy, due diligence, time into preparing an SSI application as I would have put into arguing a case before a State Supreme Court or a Federal Circuit Court of appeals. That’s the sort of level of preparation that is necessary background knowledge. My graduate education, I don’t know what the sticker value is, but probably half a million dollars at least. And that’s not a scalable solution, right? We can’t just send everyone who needs SSI to law school and public health school first. That is absurd. However, when you look at, to your point, the process that has been designed for disabled folks to access these vital, literally lifesaving benefit programs, you need a legal degree. You need some public health training or some medical training. You need to be able to speak both law and medicine in order to do your own application. We’re talking about a bureaucratic process that’s really not designed to find disabled people and provide support to them. It’s adversarial. That is the thing that I think most people miss. Applying for SSI or SSDI is really an adversarial process where, on one side of the table, you have a disabled person, and on the other side of the table, you have the United States federal government in all its bureaucratic glory with mountains, literally — People watching this know that the POMS are thousands and thousands of pages, the Program Operation Manual that the Social Security Administration uses, the relevant code of federal regulations. Then there’s some law. And what that is condensed down into are these 20, 30 page forms from the Social Security Administration that are really — and this might be controversial, but it’s true — they’re trap. The forms are a trap. You don’t need to be Admiral Akbar to realize that when the Social Security Administration is giving you three lines, literally three lines, to describe your complex medical disability situation as it relates to various aspects of your life, it’s a trap. So, that doesn’t have to be like that. We can do better. We could have a non-adversarial process. We could have a process that’s designed, instead of looking towards the goal of denying people, we can have a process that’s designed around fairness, around catching everyone who is eligible. Because the other important point to note here is that for folks who are applying for SSI, they’re usually doing it without a lawyer. It’s an adversarial process; they’re going in unarmed, essentially. They don’t have counsel because there’s no funding mechanism really for SSI. There are some great SOAR programs that offer specialized services to particularly vulnerable populations, homeless folks. And I know great lawyers who have done fantastic work there, but they make up a tiny percentage of SSI applications, really, really small. Most everyone else is doing this without a lawyer. And what you’re told is apply, get denied, and then you maybe will be able to find a private lawyer. So, if somehow you do manage to get through the application process, you’re still not out of the woods because the Social Security Administration conducts what are called Continuing Disability Reviews. I call them Are You Disabled Enough Audits? And instead of the IRS across the table from you, it’s the Social Security Administration, and they want all of your medical records, and also, if you’re relying on SSI, your financial records, because there are those asset limits that Bethany was talking about of $2,000 for an individual, $3,000 for a married couple. But when you’re going through a CDR, you’re also doing that unrepresented, usually. There’s no mechanism in law or statute and regulation for the agency, for the Social Security Administration, to provide counsel. There’s no representation. There are a handful, a very small handful, of really great legal aid places across the country that do this sort of work for their local populations, but nothing systemic, nothing that reaches everyone. And so, you go through this disability audit, and the forms are confusing. They confuse me. I have a juris doctorate. They confuse me. We have this fiction, and it’s not polite; it’s deadly. It’s a deadly fiction that disabled folks are supposed to be able to navigate both the initial application process and these Continuing Disability Reviews, these Are You Still Disabled Enough Audits on their own. It’s absurd! Instead, we could, if we chose, design a program that is designed with the goal of capturing everyone, of providing these vital, lifesaving services to everyone who qualifies, who meets the standard that’s set out in law and regulation. And we’ve just chosen not to do that. And It’s really a shame because, as you pointed out, SSI approvals are just, they cratered at a time when we know that unemployment just spiked. And we also know that disabled employees are some of the first employees that are going to have trouble getting a job, right? So, we’re in this storm, just this maelstrom, this hellscape where because it’s so difficult to apply for SSI, even normally, even at baseline, but even more so in a pandemic when it may be difficult to access medical records, it’s also sort of important from the Social Security Administration’s perspective that your medical records, depending on what you’re applying for, be somewhat recent. I’m immunocompromised. I’ve been to the doctor like twice in the last year. There were single days in 2018 or 2019 when I went to more medical appointments than I have in the last year because we have catastrophically failed to protect vulnerable folks, medically complex individuals, immunocompromised folks from a virus that is particularly deadly for these populations of folks. And so, I’m not surprised that we saw the just precipitous decline in approvals. But it’s also just another indication that the system is broken. I mean, it’s working as it’s intended to. It’s just what it’s intended to do is not what we should be advocating or endorsing. It’s just we should be trying to provide what, Bethany was right: It’s a subsistence living. It’s not even really subsistence. It’s below the federal poverty level, which is itself already too low. Trying to live on somewhere between $750 and $794 per month is cruel. It’s cruel. We expect that. We demand it of people who are relying on SSI, and it’s wrong. I mean, the whole, what we demand of people for a pittance, for a sub-poverty pittance so that they don’t literally die in the street is cruel, but incredibly usual for our system.

VALLAS: Well, and Matt, I’m going to stay with you there on that theme because you started to dig into how absolutely, unbelievably, woefully low the benefits are, which Bethany also referred to. But we’ve sort of segued from talking about how hard it is to access the programs to the group of people who are sort of lucky enough to access the programs. And what you’ve started to get into, and what I want you to dig into more deeply as well, because it really is kind of the right place to go as we start to lift up some of the policy solutions that are urgently needed and which have been needed long before the pandemic to be clear. You’re highlighting some of the incredibly outdated program rules, many of which have been further underscored by COVID that really need to be addressed in order for SSI, in particular, to allow its beneficiaries even basic dignity, let alone economic security. You mentioned that the federal benefit rate, which is the technical term for the maximum amount you might get from SSI is, it’s less than $800 a month. That’s what it is in 2021. And that’s only about 75 percent of the federal poverty level for an individual. So, really, really, really small amounts of money: “pittance” is without question the right word. Talk a little bit about some of the other outdated program rules. We mentioned asset limits, but there are marriage penalties. There are even really arcane program rules like in-kind support and maintenance, which I know you will talk about, which all conspire to really erode the dignity that beneficiaries are able to enjoy if they are lucky enough to receive this pittance from the program. Talk about some of those outdated program rules. And then, Bethany, I’ll come back around to you. And then, Beverly, we’re going to have you take us to direct care workers in just a moment.

CORTLAND: The rules that you’re talking about really work together so that the official policy of the Social Security Administration of the United States of America is that disabled people who rely on SSI are trapped, are forced to live in poverty. And unless you are extraordinarily wealthy or you have access to extraordinary wealth, that’s sort of where you’re trapped. And I’ll get back to that in a moment, because what you’re talking about here is not just that the maximum amount that you can get from SSI is below the federal poverty level. It’s only about 75 percent of the federal poverty level as you said. It’s not just that you are prohibited from saving more than $2,000 even at a time when we are in a pandemic, and the federal government gives advice through like FEMA of the best way to plan. This is a direct quote from a U.S. government document: “The best way to plan for the unexpected expenses that may result after a disaster is to start saving today,” when program rules prevent SSI recipients from saving more than $2,000. If they have more than $2000, their benefits will be terminated. No more payments for you while you’re still over that $2,000 cut off. It’s not just that there’s an asset limit. There’s also these really mean-spirited, just mean and cruel rules around in-kind support and maintenance, or ISM. If you are someone who relies on SSI, and someone hands you a bag of food, that gets treated as income by the Social Security Administration. And your benefit’s reduced accordingly. That’s just cruel. If your neighbor knows that you’re having a tough time because it’s hard to get by on $794 a month. I can tell you from personal experience, it’s hard to get by no matter how smart you are, no matter how cle — It’s not about that. No matter how many times some of our friends on the other side may say that it is. And by the other side, I mean people who are trying to destroy SSI. It’s just this cruelty that says that if someone helps you out and gives you some food and gives you some clothing, maybe tries to help you with rent, that’s counted as income. And you’re supposed to report that to the Social Security Administration, and your benefits, your already meager benefits will be reduced. If you get married, if you are yourself an SSI recipient, and you get married to another SSI recipient, the amount of money that you get every month, it’s not you get your $794, and your spouse gets their $794. Benefit cut by 25 percent, right? It’s not just that, and it’s not that you get to have $2,000 and your spouse gets to have $2,000, so you can have $4,000 in countable resources. No. It’s $3,000 because for some reason, we punish marriage in the SSI program. It’s just cruel. It comes from a place not of providing income security to people to allow them to navigate an increasingly dangerous world in which pandemics and forest fires and power outages in Texas due to winter weather are threats to the lives of disabled people who rely on SSI, against which they are expected themselves to prepare because that’s no longer a function our government can be relied upon for. Certainly not in people who were desperately seeking generator capacity for their home oxygen machines in Texas very recently. They couldn’t rely on their government to come through for them. We are told that you have to save yourself, but we’re not permitted to do that. It’s a kind of cruelty that is about coming from a place not of trying to provide security to people, but punishing disabled people for existing. The premise we’re starting with is that disabled people are out to scam you. They’re out to get one over on you for that princely sum of $794 a month. It’s just it’s wrong. Doesn’t have to be that way. We could instead get rid of the ISM rules. We could instead get rid of the asset limit. By the way, those asset limits are a major barrier to marriage if you want, as someone who relies on SSI, to marry someone who does not rely on SSI because resources like a 401(k) or an IRA account are counted as countable resources. So that we’re all told that we have to see for our own retirements now. Pensions have sort of fallen by the wayside. Well, if you want to marry someone who is even in the sort of lower-middle income stratification of workers and is saving for retirement, well, that’s probably going to disqualify you from SSI. So, there are just this myriad maze of really mean-spirited rules that are designed to punish people who rely on SSI, instead of providing them with basic human dignity and a decent standard of living in this, the wealthiest country on the face of the planet.

VALLAS: And we’ve said a few times now that some of these program rules, which are mean-spirited, which are cruel, which were always mean-spirited and cruel, are also incredibly outdated. And to just put a year on that for anyone who’s wondering, the asset limits are a great example of how outdated so many of these restrictions are. They have not been updated since 1989. I will pause to let folks take that in. 1989: the last time that the asset limits, which are $2,000 for an individual, $3,000 for a couple, have even been updated by Congress. So, just to give a little bit of perspective on what we’re talking about when we say outdated. I’m going to suspect there are people right now who are watching this panel, some of whom are younger than the asset limits in SSI. Beverley, I’m going to come over to you now for this next chunk of our conversation. We’re going to come back to Bethany and Matthew for sort of a lightning round at the end. But Beverly, on the flip side of the coin, our direct care workforce who provides critically important care to people with disabilities as well as to older adults. It has really been spotlighted in this moment, this pandemic moment, as quote-unquote “essential workers” — Now, I should note, that’s a term that has in some ways lost a lot of meaning for people, because to be called essential is one thing; to be treated as essential is an entirely different proposition. But it’s really important that we be talking about both sides of the coin in today’s discussion, because it’s bad for both care workers and people with disabilities if care jobs are low-quality, if they’re underpaid. And on the flipside, it’s in both groups’ interest to treat care workers better and to ensure that they’re actually dignified jobs. For example, if workers don’t have sick days, what do they do? They come to work sick because they don’t have a choice. Just actually as we were, as a panel, preparing for this discussion, a report was released in California by a California state auditor. That report was requested by your union local. And it painted an incredibly dismal picture of what your local is calling a quote “care crisis” in California. And I know you’re going to talk a little bit about that. What’s the picture for care workers right now in California where your local is based and also nationally?

YU: Absolutely. Thanks so much, Rebecca. On behalf of the UDW, we represent over 140,000 in-home support services providers and child care providers in California. And as you may know, IHSS is a Medi-Cal-funded program that allows for quality of life for recipients and helps the state and county save money by limiting the need for expensive institutional care. There are currently over 550,000 IHSS providers in our state providing care to over 640,000 older adults and individuals with disabilities. And the care can include daily tasks like dressing, bathing, eating to allow clients to live at home in comfort and dignity. And to your point, as the COVID-19 pandemic approaches the one-year mark, the importance of the program just continues to grow. And we were pleased to see at the beginning of the pandemic that IHSS providers were deemed essential workers, right? But our providers help keep recipients out of long-term care facilities, in congregate settings, where older adults have now been disproportionately impacted by COVID-19. But even as a safer means of care, social distancing isn’t an option for our members, just given the nature of the personal care and domestic services. So, while our providers have been called frontline heroes, there have been little changes in the wages, benefits, and to the quality of the profession.

VALLAS: Well, and Beverly, I’m going to stay with you here for a moment. Talk a little bit about who care workers are. What do we know about the demographics there, and what do we know about what’s going on in California with that care crisis that I just described? What did that state auditor report find?

YU: Absolutely. Our providers are overwhelmingly women, and the majority are people of color. Nationwide, a quarter of caregivers are immigrants. On average, our providers make just above the state minimum wage for their lifesaving work. And when you take a closer look, the gender and racial wage gap is profound in this profession. Many providers who are women are disproportionately driven out of the workforce to accommodate for family caregiving. And additionally, after slavery was abolished, many people of color continued to do domestic work, including home care, as it was one of the few available occupations to them. The 1938 Fair Labor Standards Act excluded domestic workers, leaving out people of color workers from key protections such as minimum wage and overtime eligibility. And a lack of adequate wages and benefits for our workforce is really rooted in this history of structural and historical racism. And through unionization, we are working to ensure that our caregiving workforce make livable wages and are treated as professionals. We currently bargain contracts locally. And most counties, the employer of record do not offer health benefits. And with the exception of the annual paid sick leave benefit of only two days, providers traditionally do not receive any paid time off or retirement benefits. And this failure to recognize the hard work, dedication, expertise of our home care providers just persists today. You talked about the audit, Rebecca, and thank you so much for bringing this up. At a high level, the audit confirmed many of the concerns we had regarding the IHSS program and the care crisis in front of us. The care crisis is going to be a great issue for California as California ages. Individuals over 65 will grow from 6 million to 8.5 million, and the projected need for IHSS services will jump from 600,000 recipients to 900,000 in at least 10 years. A little over half of this population are receiving services already now. Additionally, the population of older adults is expected to double. And there’s also a demographic shift for many of the family composition. Fewer people have spouses and children readily available to care for them, and we will need more non-family caregivers to take care of recipients. The audit found that the number of recipients who lack care grew from 33,000 on average each month in 2015 to 40,000 recipients who lacked care in 2019, due in part to the lack of planning on the state and the county. And while it is the recipient’s responsibility to hire and direct care, it is the county’s responsibility to ensure that care is provided. Of the 51 counties that responded on the challenges they faced, 32 indicated that there is not a sufficient number of caregivers for approved services in their counties. And the audit showed that social services in the counties failed to complete mandatory annual planning activities to ensure the provision of care to recipients, and that counties did not process IHSS applications in a timely manner, delaying services for thousands of applicants. Some counties took longer than three months to process applications. And taking a closer look for approving services, in 2019, the audit showed that it took over two months for an application to get approved and three to four months before care services were received. So, in the meantime, recipients are just left in a bind unless they have family members to take care of them during this time period while they’re waiting. And without a family member to wait patiently through the process, providing care for free or out of pocket, it’s unlikely that a non-family-related worker will wait without a paycheck to care for a client. And so, as the population in California ages, there will be an increase in individuals who don’t have family members, who don’t have children, who are single, did not get married, and the gap for care will only get worse. So, just to recap, it’s going to be more and more difficult to find care, especially for the growing number of individuals who don’t have family members. And we already face many difficulties in recruitment and retaining providers. For IHSS, the turnover rate is 40 percent for this workforce already. And the audit, when it came to recruitment, they found that the counties will likely have difficulty recruiting caregivers. And this is because IHSS providers earn far less than a living wage throughout the state. It’s a fraction of the living wage. And in some counties, providers don’t even make 50 percent of the living wage. Many providers themselves qualify for public assistance, even those who work full-time. So, the number of IHSS recipients, they already exceed the number of caregivers, and the gap is just expected to increase. And this higher demand for home care workers and limited number of workers to meet this need, this is going to just exacerbate this existing care crisis. And I would just also note that there aren’t any real incentives right now for IHSS providers to stay in this profession, especially when domestic work and personal care services are stressful. And it may be better for a provider to find another minimum-wage job or another job with higher wages and health benefits. Statewide, according to the report, in 2019, the average caregiver made over $12 an hour, just slightly over $12 an hour, and the statewide living wage was $21 to afford basic necessities. So, it’s very hard to have workers stay in this workforce given just the low wages here. And it’s very important that we can bargain for higher wages in order to keep this workforce here and meet the demand for care.

VALLAS: To underscore that last point that you just made, I’m going to actually read a quote from the president of UDW and also an IHSS provider herself, Edith Adams. She writes, “I make just above minimum wage for the care I provide.” She lives in San Diego County. She says, “The cost of living here is over $24 an hour. How am I supposed to provide for my family? How are we supposed to attract more caregivers to this job?” So, just underscoring what you were just speaking about. And obviously, it’s more than just wages, but wages are really, really hard to overstate the importance of, right, as we think about the baseline that it takes to ensure dignity in a job. Bethany, I’m going to go over to you quickly before I open it up to the full panel to close us out with kind of the additional policy solutions we need to get on the table. To do a decent job as panelists having this conversation, we’d be remiss if we didn’t get a few things in before we wrap. But hearing that set of just really dismal state of affairs that Beverly was just describing, the care crisis, which is obviously not just in California. California’s an example of something that is happening across the country. Something that you have also done a lot of thinking, a lot of working on, is really the need to think holistically about how policy decisions interact. You were discussing that a little bit more, a little bit previously in the context of SSI and SSDI or Medicaid and Medicare. But some across the disability and the care worker advocacy communities have been pushing for a policy conversation that cuts across silos to ensure that as we fight for higher wages for care workers, wages that urgently need to go up for all the reasons Beverly was describing, that there aren’t unintended consequences for the consumers of care: the people with disabilities and the seniors who rely on that care to live independently rather than to be in institutions, which we have learned, if we didn’t already know before this pandemic, are not just, they can be terrible places to be. They can also be deadly places to be, is what I’ll say. What is the policy agenda here to ensure that people with disabilities can access the care that they need and the number of hours of care that they need, while also ensuring that care worker jobs are good jobs, rather than thinking that those are at cross purposes?

LILLY: I mean, I think it’s very much the exact same fight. I mean, what Beverly said about when her care workers can’t access, there aren’t enough care workers, family members step up. And those are a lot of the families I represent. And everybody has the same incentives here, and we need to make sure that wages do go up because care workers need a living wage. Because that’s how we make sure that family caregivers have the freedom to go back to work. And family caregivers need paid leave just in the same way that home care and personal care and direct support professionals need paid leave. Everybody needs the same thing. We’re actually having, I think, very much the same discussion. I don’t know that we always do the best job of coming together and having that discussion. One thing that I think a lot of folks might not know is most direct care worker wages are set by Medicaid. And that means that when you pass something like a minimum wage expansion, unless you’re very careful about it, you are suddenly setting the state or the local minimum wage higher than the direct care wage. And that has repercussions for the access that people have to direct support professional staff, to direct home care workers. That is something that we need to think about systemically when we’re approaching it. And maybe that means an increased FMAP in the Medicaid program to make sure that those direct care workers are getting a living wage. Because that’s equally as important for somebody who needs access to a direct care worker as it is to the worker themselves. So, I’d like to say that we’re all on the same page, and we all should be pushing in the same direction. And I think we’re slowly getting there. I also think to your point about institutionalization, I still can’t get over that they had to call the National Guard into a state facility in Illinois for people with intellectual and developmental disabilities. Over half of the residents and staff had been diagnosed with COVID. And for us, for disability rights advocates, it’s a civil rights issue, and it always has been. But this is why. And I think many more folks in the aging community, having witnessed what has happened in nursing homes recently, are going to be advocating much more strongly, I think, for community services than they have previously. And I think that’s another area where the community can come together, the disability community and the aging community, because we all understand how risky congregate settings are nowadays. And we all want to support home care workers getting better wages and having the union-protected jobs that they have, so.

VALLAS: Another very timely fight that is going on as we speak, although there might be news between our prerecording we’re doing right now and when this actually airs. So, I don’t want to assume that we know everything that will be happening when people are watching this later this week. But obviously, the Raise the Wage Act, yet another policy fight that would be really, really important for care workers to raise wages, would also be really important for people with disabilities. Because the Raise the Wage Act would, in addition to raising the federal minimum wage — which has been stuck at $7.50 an hour for about 12 years now. That’s the last time Congress raised that that federal minimum wage — it would also phase out a provision and archaic loophole in federal wage and hour law that is called 14(c). It allows people with disabilities to be paid less than other workers just because of their disability. That still exists in federal law. And Raise the Wage would do away with that archaic loophole, making sure that disabled workers are paid the same minimum wage as other workers, alongside that tipped minimum wage, which would also be phased out as part of the Raise the Wage Act. We’ve only got a few minutes left, and I want to sort of open it up as a last little lightning round here for everyone to have a chance to throw out some of your top wish list policy solutions. We’ve gotten into several of them already, and some of them sort of flow naturally from the gaps and the challenges that you all have been speaking to. But Matt, I’m going to go to you first, and then we’ll just do a quick round robin. What are the current opportunities in policy solutions that you think that policymakers should be focusing on, that you either haven’t had a chance to mention yet or that you want to reiterate, recognizing that there are real opportunities, both administratively, for what the Biden White House and administration could be doing right now, as well as legislatively, things that Congress could be doing.

CORTLAND: There were certain mean-spirited policy changes that were made under the Trump administration. For example, the treating physician of someone who is on SSI is no longer controlling in terms of how the Social Security Administration views their disability, their medical functioning. That used to be the case. Your treating physician knows you. They treat you. That’s literally the name of the relationship. And for reasons, the Social Security Administration decided that the report that one of their doctors who might spend 20, 25 minutes with you, types up about your very complicated sometimes medical conditions could be used instead of the opinions of your treating physician. That’s this sort of what I call policy vandalism that could be very easily unwound, but that’s not good enough. We are, as is so often said these days, facing unprecedented catastrophes and crises. So, it is possible for the Social Security Administration administratively, just through their own regulations, to change some of these barriers that are imposing poverty on disabled folks who rely on SSI. What is considered a countable resource for the purposes of the asset limit, for example, that can be changed. We need congressional action on things like raising the amount of money that SSI provides on a monthly basis so that it is at least, at the very least, equal to the federal poverty level so that poverty is no longer a political choice that we are imposing on marginalized disabled people. We need congressional action on that desperately, and I hope that we will get it. We also need the Social Security Administration, though, to rethink the application process itself so that it is not adversarial, so that it is like, someone — We’re talking about form after form after form. You know, you’ve got your Third Party Function Report, you got your Self Identifying Function Report, you got the application itself. You’re looking at just stacks of documents to try to apply for SSI. We need to rethink that. We need to move to a system where the goal is to identify people who are eligible instead of trying to keep as many people off of the program as possible. And we’re failing. Just the data is very clear that we are failing to provide SSI to people who are disabled and who desperately need it. We’re also going to see, I think, an influx of people disabled by the long-term effects of COVID-19, what’s being called in popular press right now, “COVID long-haulers,” who are dealing with really debilitating conditions on an ongoing basis. And I think that there needs to be some consideration, real consideration for making the process more disabled user-friendly in a way that also increases the capacity of the Social Security Administration to process these applications. Because I think we’re going to see an upsurge in them. It’s an unfortunate reality of an uncontrolled pandemic that has long-term consequences. And that really should be, I think, work that begins just by reimagining what the application process would be, what it would be like if it was really designed to be fair and didn’t need five years of graduate education and the mindset that you are arguing before a federal Circuit Court of Appeals, because that’s not a scalable solution.

VALLAS: And shifting away from that mindset, as you put it, right, that these programs are some kind of budget problem to be shrunk or something that we need to keep people away from to a mindset of hmm, how can we actually make these programs things that reach the people who need them and are accessible in reasonable ways.

CORTLAND: Absolutely.

VALLAS: Bethany, I know something that you’ve been working on — and you’re only going to have about a minute to talk about this, but it needs that minute, needs to be said — is something called the Stop the Wait Act, which is a push to get rid of some of the waiting periods for these benefits. I know we could spend a lot longer than a minute talking about it, but it deserves a mention in this conversation.

LILLY: And I think I mentioned it briefly earlier. But if you go through the application process for Social Security Disability Insurance, you have to wait five months before you get any cash benefits and then another two years before you get access to healthcare. And that means that in states where you haven’t had a Medicaid expansion or for people who are earning just over those really strict income and asset limits for Medicaid, you might not have access to any type of healthcare. People die in this waiting period. Hundreds and thousands of people die in this waiting period. And so, the Stop the Wait Act would eliminate it. It’s legislative, which means it’s going to be a big lift. But Congress actually lifted the limit for folks with ALS at the end of last year, and so I’m optimistic we might get some traction this year.

VALLAS: And Beverly, you’re only going to get about a minute as well. But any other policy solutions that you want to lift up in addition to the Raise the Wage Act, which I know we’re all watching to see if it can end up in the reconciliation package, despite a disappointing ruling from the parliamentarian in the Senate.

YU: Absolutely. We’re working with our parent union, AFSCME, to support the federal minimum wage and the Raise the Wage Act. In terms of other priorities, we are working with AFSCME to extend unemployment insurance to parent and spouse IHSS WPCS providers. Under current law, IHSS and WPCS providers are not eligible for unemployment insurance. And this impacts about 123 home care providers in our state and 500 WPCS providers. If these providers face hospitalization for their child or spouse, they are left without any income, as they do not have eligible, eligibility excuse me, for unemployment. So, in extreme circumstances, sometimes the provider will lose their client, and these providers face tremendous economic hardship while they’re also suffering the grief of their loss. So, the UI program was created by the Social Security Act in 1935. It was really the racist sexism of the era that excluded domestic and farm workers, two workforces that comprised overwhelmingly of people of color to secure a passing vote. So, after 80 years later, there are still loopholes excluding domestic workers. And we want to fight to make sure that parent and spouse IHSS and WPCS providers who were excluded will now be included in eligibility.

VALLAS: And I’ll take moderator’s privilege to just say about 10 seconds on one other thing I would love to see happen right now, which is we should see federal funds actually going out the door to support legal aid programs helping folks apply for Social Security Disability benefits. That would be a very, very easy, tangible thing that, while we’re having a broader conversation about how to restructure programs and application systems so that rather than bureaucratic disentitlement, we have meaningful income support, in the meantime, we could at least put some dollars out the door to help the programs that are under-resourced help folks apply. Because if you need a law degree right now to get benefits, I think something’s wrong. But let’s fund the folks who have those law degrees in the meantime. So, we’re out of time. There’s a lot more that I know this panel would want to get into and that I would want to get into as well. But please join me in thanking our fabulous panelists. Matthew Cortland is policy director of Be A Hero and someone who, as he discussed, has himself been helped by SSI. Bethany Lilly, senior director of income security at The Arc and one of the co-chairs of the Consortium for Citizens with Disabilities Social Security Task Force. And Beverly Yu is the state government affairs director of UDW/AFSCME Local 3930. Thank you so much to all of you for taking the time, and I hope folks will stick around for the next session with Pathways to Economic Security.

And that does it for this episode of Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by the Center for American Progress Action Fund. I’m Rebecca Vallas. The show is produced by Will Urquhart. Find us on the airwaves on the We Act Radio Network and the Progressive Voices Network, and say hi and send us your show pitches on Twitter @OffKilterShow. And of course, find us anytime on iTunes or wherever you get your podcasts. See you next time.

♪ I want freedom (freedom) Freedom (freedom) Now, I don’t know where it’s at But it’s calling me back I feel my spirit is revealing, And now we just tryna get freedom (freedom) What we talkin’ bout…. ♪