 Welcome. I'm Justin King. I'm the Policy Director for the Asset Building Program here at New America. And I really want to thank you all for taking the time to join us today. It is great to have you here, whether you are in the audience physically in the room or virtually, watching us online or stuck in Buffalo, New York under seven feet of snow. I think most of you know our work in the Asset Building Program is focused on broadening access to economic resources, primarily through increased savings and asset ownership. And the key insight of this work is that you cannot determine somebody's economic status or their well-being by looking at them at a moment in time. Those things unfold over time, and the power of assets and savings is that unlike a lot of other supports that are available, they give people the ability to manage the ebbs and flows of life much more effectively. They can help a family manage an emergency, but they also change the way that families think about the future, and they give people the power to realize their aspirations and dreams. And that's an incredibly important and powerful tool. Assets and the lack of assets is a huge part of the story of inequality in America, and it's a huge part of the story of economic mobility and immobility in America. That means policymakers really ought to be thinking more about families that are struggling with lower incomes and fewer resources. It means we need to focus on those vulnerable families and think about ways that we can not just alleviate their immediate needs, but also provide them pathways to a more secure future. And unfortunately, we don't really do this. Our policymakers have put in place rules, and I want to emphasize that it's the rules and not the programs themselves by their nature that help to keep people poor. Scholars call these kinds of rules poverty traps. Poverty traps have gotten a lot of attention in the last year or two, and the next few years may really bring us an opportunity to have a full debate about how the government helps people and how those rules and those programs may cause people to be stuck where they are. And if indeed we do have that debate, I really hope that policymakers will take the time to read the book that's the focus of our event today, Trapped in America's Safety Net. Professor Andrea Campbell from MIT has written this book based upon her family's experience with an extraordinary tragedy. And I want to begin by thanking her sister-in-law and her brother for their courage and fortitude in facing their circumstances and for allowing their story to be told. And I also want to thank Professor Campbell for her courage and generosity in sharing this story with us. You'll hear the details from her, but I do want to highlight for you that this book to me is as clear and concise and explainer of American public policy as I've read in some time. I think back to being a young Hill staffer and I wish someone had handed me this book, it would have accelerated my learning curve tremendously. And it doesn't just explain the programs, it explains the impact of those programs on real people and the terrible and often impossible choices that are forced upon people who are struggling with very difficult circumstances. The conversation here in Washington about aiding families in need tends to be very siloed, it tends to be very negative, and it tends to be very abstract. The Social Security Disability Trust Fund is going bankrupt. Able-bodied workers are cheating their way onto the disability rolls. Lottery winners are stealing food stamps. And this book takes on some of the reasons that those are the headlines that dominate the conversation. But it does a good job of reminding us that behind all that hyperbole and behind those headlines, obscured are the stories of real people. And if we could keep those people in mind and listen to their experiences, we'd all be better off and we'd have a better conversation that might lead us to a better place. As I said before, Professor Campbell is a professor of public policy at MIT. I'm so excited she's agreed to join us today. Thank you very much. After she shares this story with us, she'll be joined by NPR's Pam Fessler. Pam works at the National Desk for NPR and is their lead poverty reporter. We're very thrilled to have her moderating our conversation today. After they have a dialogue, we're going to invite some other policy experts up to join us on the stage and have a full conversation with everyone on the room. And those watching remotely can contribute questions and comments to the debate using the hashtag trapped in the net. Michael Morris is here. He's the director of the National Disability Institute. Michael's been a leader promoting greater economic opportunity for people with disabilities for over 30 years. And my colleague Rachel Black is here as well. She's a senior policy analyst in the asset building program. And she's been a leader in studying the interaction of program rules, particularly related to asset limits and prohibitions on savings in public assistance programs. I'm really looking forward to the conversation today. And if I could, I'd like to invite Professor Campbell to kick us off. Well, first of all, I want to say thank you to Justin for the very lovely introduction and also to New America for sponsoring this event and putting this program together. I really appreciate it and to all of you for being here and all the online folks as well. I want to use my family's story to talk a little bit about how social assistance and means tested programs are structured in the United States and the ways in which those designs really pose incredible barriers to those people who are receiving these programs, barriers that prevent them from making more out of their lives than they would want. Two years ago, my sister-in-law, Marcella, was the victim of a hit-and-run car accident. She was on her way to nursing school, a new profession that she hoped to enter to bring her and my brother into middle-class financial security. Instead, because of the accident, they were plunged into the world of means tested social assistance programs. The accident left her a quadriplegic, so she uses a wheelchair. She's paralyzed from the chest down. She has some use of her arms, very little use of her hands. I should also add she was pregnant at the time of the accident, and fortunately, my little nephew, their son, survived, and he seems to be fine, as she says she was his human airbag. But the accident did mean a complete change in the lives of Dave, my brother, and Marcella. She is now enrolled in Medicaid, which is the social assistance program, the health insurance program for low-income Americans. It is virtually the only source, public or private, for the kinds of long-term supports and services she now needs. She needs personal care assistance, a home health care attendant to help her with bathing and dressing. She has to be catheterized every four hours. Medicaid is the only source of this, especially for a person her age. She's now in her mid-thirties, who's going to need decades worth of care. These are not services that are covered by regular health insurance. It's not covered by Medicare. It's really only Medicaid. Now, as I should say that my new book, Trapped in America Safety Net, chronicles their story. There's lots of themes in the book about how these programs are structured and the many limitations they impose. But I want to focus on just one today, and those are the asset tests, and what the asset limits mean to the people who live under these programs. As a disabled person now, Marcella is categorically eligible for Medicaid, but she also has to meet the income and asset limits for her state, which is California. They live in the far northern end of California. So she and my brother have scaled back their income to 133% of the poverty level in order to come under the income cap. But they've also had to shed their assets to come under the asset limit. Beyond their home and one vehicle, they can only own $3,150 in assets, total. Any kind of financial asset, bank account, retirement account, any other vehicle they might own, the value of all those have to come under $3,150 in their state. It varies by state. They're told, you're lucky. Without the baby, the asset limit would be only $3,000. Did I think about this asset limit? It hasn't been changed since 1989, and it's lost half its value in that period. So what does it mean to be under this asset limit? Well, they can't have an emergency fund or not much of one. They can't save for retirement, a retirement account of any kind, like an IRA or a 401K, counts towards this asset limit. They can't save for college for their son using the tax-favored 529 plans. Those would count against the asset limit. After the accident, they had to spend down their modest assets to come under the cap. They had to liquidate their bank account. My sister-in-law had a small 401K plan balance from an earlier job. She had to liquidate that and pay the early withdrawal penalty. She said, my brother's hobby was to work on old cars. Bad hobby to have if your wife is now on Medicaid because those cars count toward the asset limit. So he had to sell all of his cars. The one that he kept is in 1968 Dotson Pickup because it's only worth $200. It's going to count against that cap. They had to keep the receipts for all these items, show how the money was used. The money could only go into the house and to their one exempt vehicle, which was a used wheelchair van they bought for her. They couldn't use any of their liquidated assets to pay credit card bills. They couldn't pay off her student loans. The money could only go into the house and the vehicle. So going forward, they face a great deal of uncertainty and financial instability. I mean, just taking my brother getting to work. The only able-bodied adult in the household now has to drive this 45-year-old vehicle to work. It has no modern safety features. It weighs less than a Miata. I mean, it's a little tiny old pickup. When I was in high school, I learned how to drive on a 1968 Dotson Pickup. It was an old vehicle then, and I was in high school 30 years ago. And more recently, he actually swapped the pickup out for another old car. The 1968 Volkswagen Squareback, because it's value two is only $200, but he needed a back seat to be able to transport the baby. The problem is, you know, sometimes he had to rebuild the engine. He literally was making some of the engine parts himself. He works in a metal fabrication plant to save money, because of course he had to have low income. He was literally making the metal parts himself at work to rebuild the engine. Sometimes, you know, the car doesn't work, or he's, you know, in the middle of fixing it. He has to beg friends for rides to work or try to borrow their cars, because there's virtually no public transportation in this rural area. Everything that happens is an emergency. The ramp mechanism for their van stopped working. The repair cost $3,000. That's the sum of their asset limit. Now, as it happened, their tax refund came in at the same time and went right back out to pay for the van repair. But if that hadn't happened, you know, what are they supposed to do? And then they can't save for the retirement, for the future. So take my brother. When he eventually retires, his only source of income will be Social Security. He can't have his own additional savings. And in fact, his Social Security benefits will now be lower, because he's had to lower his pay to come under the state's income limit. You know, they've got very little in savings. And just imagine what that's like. If you had virtually no assets, what happens if your water heater breaks, or you need a new roof, any of these kinds of things? Like, how do you manage with no assets? So that's sort of the thumbnail sketch of their situation. So what would I like to see happen? I would love to see these asset caps eliminated. Most people, most Americans, actually have very modest assets. And certainly people in say the bottom 30 income spectrum have, you know, just a few hundred dollars on average. Chasing down the tiny amounts of assets most of the folks in these programs have is highly inefficient. It's very costly, administratively. Lifting these asset caps would give such families, you know, a measure of financial stability. It would improve their ability to, you know, improve their lot rather than cutting them off at the knees. It's, of course, you know, ironically a core American value. You know, to protect your own folks, to work hard, or to protect your own family, take care of one's own, improve your situation of work in life, work hard. All those values are undercut by the way these programs are structured. And in fact, lifting asset caps is the way that policy is moving in many regards. Half the states don't have an asset limit for Medicaid. David Marcella just happened to live in one of the states that still does. And under the ACA, those people who are newly eligible for Medicaid don't face asset caps. Now this creates some irrational disjunctures. So for example, in California, if you were, say, a single male who, adult male who newly is eligible for Medicaid, you would not have an asset cap. Whereas Marcella, because she's in one of the original eligibility categories, still has the asset cap. So there are some illogical wrinkles in policy that lifting asset caps would get rid of. So, you know, these caps, they're perverse, they're inefficient, and I have a long wish of policy changes I would love to see vis-a-vis social assistance programs, but I would start with lifting these asset caps. So let me stop there. That was great. Thank you. For anybody who has not read this book, it's really amazing. It's incredible because it so clearly shows by taking a personal story, something that, you know, I as a poverty reporter have seen, heard about repeatedly, but this so clarifies and it makes it so real. After I was reading, I was read like the second chapter, I said, I can't believe there's more, you know, because it's just so astounding. And I think you describe it as falling down a rabbit hole. So one of the other interesting things about it, you talk about how a lot of these programs, the way they're developed, these means tested programs, the way they developed over time, it actually was intentional that we have a system where we were trying to create aid programs that actually made it not so desirable to be on aid, but in fact want to take a low-paying job rather than be on assistance because there were so many negatives to collecting assistance. So what have you found about why the programs were developed this way? Well, the age-old fear has been that if programs are too generous that people will want to enter a program rather than working. And so these parameters were set to discourage people from doing that, to make being in these programs worse than the worst job out there. And this is something that dates back to the English poor laws. I mean, that was the origin of that sort of orientation towards programs for the poor. And it certainly continued to this day in the United States. And I should say that as jobs have deteriorated in many ways with the minimum wage losing real value over time with many employers dropping benefits like health insurance and so on, as the quality of jobs has fallen, we've let these mean sets of programs fall in quality as well by not doing things like adjusting the asset limits or the income limits for inflation. So as jobs have gotten worse, these programs have gotten worse in conjunction. But you also said that there seems to be a shift now a little bit away from that. What is sort of propelling that shift? Well, another motivation among, see, no state wants to be a quote, welfare magnet, right? Because all these mean sets of programs are jointly run by the state and federal governments. And state governments generally set benefit levels and eligibility. And states might fear that if their programs are more generous than others, that people will flock to their state, for example. Or that if they make the parameters more generous that the roles will go up. But what's happened is that over time states have realized that administratively it can be very expensive to try to administer some of these aspects of the programs. For example, I was talking to a Rhode Island official, one of the states that dropped the asset cap for Medicaid, who said, you know, just it costs us so much just to chase these people down. It's cheaper just to insure them. Or Virginia got rid of the asset test for TANF, the transitional assistance for needy families, the cash welfare program. And the same thing was true that when they dropped the asset limit, enrollment went up a tiny, tiny bit, but the administrative savings were far greater. And so it's turned out to be more efficient not to have these asset caps and has not resulted in huge numbers of people suddenly flocking to these programs. It's interesting. Sometimes I have come across people who say that they have to go report every month sometimes to reapply and to sort of re-prove that they are still eligible when they should be looking for a job or they should be working a job. Sometimes they have not been able to hold down a job because they have to keep going and reporting to the welfare office or the social service agency. That's right. It's actually a very complicated being in these programs precisely because of these, you know, re-application processes. I mean, in the case of David Marcella, they're in several different programs and some programs she has to reapply every year. Some programs she has to reapply as often as every three months. And for someone like her, it's not as if her condition is changing but she has to still provide my brother's paycheck stubs and so on to show that they're keeping their income and their assets under these caps. Maybe you could talk a little bit about one of the other things that I found kind of incredible in this book and that was that you had initially thought or your brother and sister-in-law had initially thought that she was in one particular version of the Medi-Cal program and it was only in fact checking this book that you in fact found out a really very important mistake that had been made and to me it illustrated just how complicated these programs are when even, you know, somebody who clearly is as knowledgeable as you, you know, there was a mistake made and it was a pretty fundamental one, maybe you can explain that one. These programs are extraordinarily complex and I think that's been one of the most humbling aspects of this whole experience for me is thinking that I would be such a help to Dave and Marcella and then finding out that I don't know the on-the-ground details by any means. So what Pam is referring to is that there are many ways to be eligible and many sub-programs within Medi-Cal, California's Medicaid program as many as 100 and originally when the accident happened a social worker told them that because my brother worked they were in a version of Medi-Cal called Share of Cost, Medi-Cal and the way Share of Cost would work is that if my brother at the time he was earning $3,200 a month they were allowed to retain $2,100 a month in income and any month in which she had medical expenses which of course is every month they had to pay their Share of Cost which was the gap between $2,100 a month and whatever my brother made so that was, it's sort of like having a health insurance program with a giant deductible that resets every month so every month they had to pay the first $1,100 of her Medicaid services if my brother were to make more money, get a new job their Share of Cost would simply go up so this is obviously a very draconian program So that was like 100% tax on any additional money he would earn Exactly, so that's another sort of perverse way in which some of these programs are designed I mean who in America confronts 100% tax? Poor people in Share of Cost, Medi-Cal so it turned out that when I was finishing up the book the Press, the University of Chicago Press got me access to these very high level officials in Sacramento to help me fact check the book and we're going through the details and it turns out that she didn't necessarily need to be in Share of Cost, Medi-Cal there could be another program that she could be in retain eligibility but my brother would be able to make somewhat more money We didn't know that without this kind of access and what's really extraordinary is not only is there no way for me to know this until I get this kind of access the official said, well there's probably thousands of people who are in the wrong version of Medi-Cal and what can you do? The other story thing was the real question we want to answer to is what is the maximum amount of money that my brother could make without rendering her ineligible for Medi-Cal so I put that question to this state level official and he said, I can't tell you he literally didn't know the answer he said, you should really just the World Institute on Disability which is based in Berkeley, California provides a lot of resources for disabled people go look on their online calculators so I just found that extraordinary even if people running the program couldn't provide us with the answers and you're really talking about me this is a difference between maybe total destitution and maybe being a little bit better off these are very crucial differences Absolutely, because they could retain a little bit more income and provide much more stability the other thing we found out by talking to state level officials is also very concerning probably the best situation they could be in would be to enter a program called California Working Disabled California and a number of states have pioneered programs to allow people on Medicaid to work, especially disabled people without losing their health insurance and their personal care assistance CWD is one of these programs it's very attractive because not only does it allow you to work and retain eligibility but also any income the disabled person earns can be put in a separate savings account and doesn't count against that asset cap and the disabled person can even open an IRA and save for retirement without that counting against the asset cap so when we started learning about this it sounded incredibly attractive there was a lot of research on it I contacted my brother and sister-in-law and they said, well we've heard about it the social worker says she's not eligible so I thought that was merely a mistake on the part of the local social worker there are so many programs in Medi-Cal it would make sense that perhaps the social worker didn't know about this particular one only about 1% of all Medi-Cal recipients are enrolled in it when I was talking to the state level officials they did this story and the state level person said she's not eligible how could that possibly be the case so it turns out that because she's in a version of Medi-Cal for which she does not have to pay a monthly premium the program is barred from making her worse off by moving her into this CWD program for which she would pay a very modest monthly premium to be in Medi-Cal so they're barred from moving her from free Medi-Cal into a version of Medi-Cal for which she'd have to pay a monthly premium this monthly premium would save them a tremendous amount of money over the sort of share of cost version of Medi-Cal the way that she would need to get into this would be to leave Medi-Cal get a job re-enter Medi-Cal under the CWD program and hope that there wasn't a gap in coverage in going through that process and then sister-in-law are petrified at the prospect of doing that because the chance that that's all going to work without a hitch is very low and they have good personal reason to worry that this is not going to work that this may not work at one point they take their son who's supposed to have insurance to the doctor public insurance and they find out he's not covered, he's not in the system he's having insurance and they can tell them again when I was talking to the state level officials you know why was my nephew kicked out of the program the state level person looks on the record and says well the termination code is number 99 which is just the catch-all code no specific reason attached it just means that he wasn't kicked out for reasons 1 through 98 so that's a level of complexity we're talking about and as you so aptly describe it in the book you call it falling down the rabbit hole the social safety net rabbit hole which is very much like a Alice in Wonderland situation and I would like to maybe invite Michael and Rachel up here now to join the conversation and I think maybe just if you just take a couple of minutes if you have one or two comments and then we can have it work I read the book and as an organization that works on really trying to find ways to help people with disabilities find a pathway to greater economic stability and some level of quality of life as you describe I still it was a page turner for me because it is it isn't a portrait of one family it's a portrait of millions of families across this country who are faced with similar issues one person one researcher once said if you see one state Medicaid plan you've seen one state Medicaid plan because in fact each state has 10, 20 possible other waivers permutations you just described a few and so even with your incredible educational background what happens to the average family what happens to the individual who is not supported by a husband but acquires a disability and doesn't have that circle of support even a society that should be doing better and your book really illustrates that we have a maze of public policy that isn't aligned with the idea that people, whether they were born with a disability or acquire a disability should be able to have some social safety net that is not complex but is simple to navigate that has the right incentives to want to work to live independently part of their community to be part of the economic mainstream we have a long way to go I just want to reiterate what both of you have said this is an incredibly compelling story you know as somebody who deals regularly with a lot of the complexities of social assistance programs and their rules reading this was almost like seeing the movie you know how it ends you know how challenging it is and you just can't turn away from it there are a couple of themes from our assets perspective I just like to lend to some of what you were discussing in the book versus just how convoluted it is they are incredibly convoluted a lot of program rules are set at the federal level some are at the state they are implemented differently what counts as an asset varies as Virginia still had their asset limit for SNAP formally food stamps things like mineral rights or the value of your RV were things that you would have to document when you went in to apply for assistance that really doesn't make any sense and oftentimes these result in just very arbitrary outcomes Illinois for instance has eliminated both their TANF and their SNAP asset limit so people who apply for the program or can have a modest amount of money in their bank account and still receive assistance Indiana in contrast has the lowest asset limits in the state at $2,000 for SNAP and $1,000 for TANF so families with the exact same financial circumstances have very different experiences when it comes to accessing the program navigating the system figuring out what the rules are and also sort of what their financial circumstances are when they are accessing the program this is something else I wanted to mention is just how counter productive they are ostensibly the objectives of the programs are to help families achieve a level of financial security and being able to successfully transition off not having any kind of buffer against the vicissitudes of life makes that very challenging also making just small adjustments in your life that would lead to greater financial security very challenging to do getting your car repaired that you need to go to work this is necessary for maintaining a job and having secure income if you wanted to take a class at your local community college to increase your credentials your education so you can increase your potential earnings to several years before coming to New America I worked with families who are in the foster care system and there was one parent who lived in a hotel this is because she didn't have first and last month's rent to be able to live in some kind of stable housing situation which certainly would have been helpful for the stability of her family and would have been lower cost over time because she didn't have access to just a very modest amount of resources to make that challenging you also mentioned administrative costs this is often used as I think a justification for why these eligibility rules need to be as strict as they are to make sure that they're targeted to make sure that lottery winners aren't on the program but in reality this is just a very extensive search for a needle in a haystack when Illinois got rid of their asset limit they found that eight people the previous year had been disqualified for having assets in excess of their $3,000 limit on the other hand they estimated that they saved a million dollars in administrative costs so if you just sort of crunch the numbers on that in the back of the envelope they wouldn't have needed to have recouped about $125,000 per tan of family to make the justification for having that asset limit in place in reality these families have about $5,000 annually in cost so this is really just an argument that's really thin and just finally to say that the way that we treat families in public assistance programs is just in such sharp contrast to other kinds of social policy you know when we look at our national policies to support savings for instance nationally we spend about half a trillion dollars a year to help families save and build assets through home ownership, through retirement and through other means because this is sort of a shared national value the way that these incentives are structured they're almost entirely administered through the tax code so they necessarily blow up the income scale so the better off you are the more subsidy you get for the savings whereas families who are the most vulnerable and who could benefit the most from these kinds of supports are explicitly restricted from saving and taking the exact same kind of actions that we incentivize for higher income families thank you and I guess that brings me to one of my questions and that is politically what do you say to the person who or the public if you're a politician but somebody who was a lottery winner did in fact get some of these benefits or somebody who has the Mercedes you always hear those stories so politically how can these things be changed in our current political system given that nobody wants to defend somebody who does have wealth should there be some asset limits or is it just that they're too low or is it that the argument that you're making just isn't out there enough that in the long run it's more cost beneficial to not have the asset limits I think there's multiple ways to come at an answer to that I think in general the notion that disability is a natural part of the human experience is a myth to policy makers it happened in your family it's the story of the book it happens to families every day somewhere in this country but policy makers tend to be immune from what their context or experience having worked on Capitol Hill I've seen the policy makers at both ends of the ideological spectrum republicans and democrats when suddenly a child was born in the family an uncle was injured on the job a member of the family had a disability in a car accident you would be shocked at how quickly their view, their lens changes I do think this notion that of welfare fraud which the media has perpetuated is an extraordinary disservice to people at the lower end of the economic spectrum didn't get there because of something they did they either it was acquired at birth or it was acquired through accidents or something else or now we have the wounded warriors by serving their country and trying to protect all of us and yet there isn't this understanding that why for any of those individuals shouldn't they have a safety net that has two things it protects against absolute utter poverty, homelessness, hunger access to health care but at the same time also provides incentives for husband and wife or members of a family as well as the person with a disability to work to be able to save, to create assets our policies aren't there and raising the asset limits I think as much as I'd love to see with this congress, previous congresses or future congresses that we're going to get to the point where they'll be wiped out although as you described the state experiences show that in fact there isn't a breaking of the bank there aren't all these thousands of people that are suddenly going to take advantage of this I think what happens is really that we'll see more likely I hope as the president this president and other presidents have recommended and there are actually some people at both ends of the ideological spectrum who believe that raising the asset limits makes sense simply as a point as you've made about an alignment of social policy what does it say about who we are as a country with all the wealth that we have that we, who could survive on $2,000 no emergency funds no incentive to put any money aside which means no incentive to work it doesn't make sense so what do you think are some of the biggest impediments to change well there are many, unfortunately there are these vivid anecdotes the lottery winner who's on TANF those tend to seize exactly, they tend to seize the public imagination as opposed to people underestimating the actual likelihood of disability and so there's this sort of mismatch between these one-off anecdotes and the actual rates in our population one thing is that people underestimate disability, not even the one age group in which we might think that people will be most likely to understand that disability is a possibility in the older population and even there we tend to underestimate it at age 65 your likelihood of needing home health care at some point during the rest of your life is 72% and your likelihood of needing some institutional care is 49% those are very large numbers and yet there's a lot of silence around disability denial that this is going to happen to you or in your family and also just lack of information lots of people think that health insurance covers this kind of care or that Medicare covers it and that is not the case as to asset limits there have been proposals for example in the federal means programs to lift the asset cap to say $10,000 so that means it would apply for SSI food stamps, the other federal social assistance programs the only problem is that if you had a 10,000 cap at the federal level but then an individual was under the state's Medicaid cap of $3,000 then that federal lift is not going to help you so there needs to be really wide consideration across states and the federal government about what these asset caps where to put them at I think a lot of people thought that the Affordable Care Act might address some of the concerns that and some of the issues that were raised in your family's experience what impact did it have and what impact didn't it have that you sort of thought it might well the ACA was principally about health insurance and extending health insurance to more folks and to addressing some of the difficulties in the existing the pre-existing individual health insurance market with more stringent regulations the ACA as it exists now leaves many of the issues for the disabled on the table there was a component of the ACA called the Class Act Community Living Assistance and I forget the S and the S this would have been a social insurance version of long term care where people could pay in a payroll tax if they would be vested after five years and then if they were to become disabled at any age they could get a modest daily benefit that might offset part of the cost of home health care or institutional care the actuarial problem with the Class Act is that it was a voluntary program with the voluntary programs we worried that only the people most likely to use it would enroll which would create a sort of death spiral in an insurance sense and so even though it was part of the ACA as the law was passed shortly thereafter the HHS secretary declared that it was not going to be implemented because it was not sustainable and then it was formally repealed as part of the fiscal cliff bill that congress passed so now we're back to square one actually in terms of in terms of the fact that the services that the disabled need are primarily still covered through Medicaid without the ACA not really touching them right do you want to add anything to that or for people who are eligible for Medicaid outside of their disability status I mean there were some provisions in the ACA in addition to eliminating the asset limit for Medicaid for the expansion groups and it also provides some funds for states to experiment with streamlining their eligibility process so in California for instance they have instituted express lane eligibility so if you're eligible or participating and snapped in your categorically eligible for Medicaid so that helps with navigating and standardizing some of the eligibility criteria but of course as you say there are so many people who are outside of that process that it's still a goal that is sort of yet to be maintained at scale I just might add to that is it goes back to the point you made earlier which is depending on where you live in this country what state depending on even at times what age you acquired your disability depending on the social, political, economic environment that in one state make sure that you have long term services and supports for people with certain types of disability for certain types of services and yet just cross the border and travel 10 miles into another state and if you by some chance happen to live there you have nothing we have a policy that really has not addressed I think it is really not understood about the Affordable Care Act that maybe this was a first step and it certainly has a lot of advantages for lots of people who are uninsured but we haven't tackled the big issue in this country where the demographic show in aging America as well as people with disabilities at any age that they acquire their disability personal care assistance adaptive technology just so many things that are not typically going to be covered by any health exchange under ACA and are not going to be covered by any state Medicaid plan for an awful lot of people with disabilities Michael you mentioned before that there were people on both sides of the political spectrum who are sort of recognizing that maybe assets are a good thing for people to have and that asset limits might not be so good and I'm curious from all of you if you think we've had Congressman Paul Ryan present an anti-poverty plan and some of the other Republicans are talking about fighting poverty and one of the things they do talk about is simplifying things that we have this very convoluted system making it simpler and to have the focus to get people out of poverty I'm curious if you see some hope there for some kind of solutions that you would think was favorable or beneficial or not who wants to go first I'll tackle it but I'd love to hear the new America I think I would have concerns that getting people out of poverty is really a euphemism for off of programs I think this is something that we saw play out with welfare reform in 96 the way that we define the goals for what reform looked like really had to do with reducing the roles rather than transitioning people to sustainable employment making sure that they had access to the supportive services that they need like childcare, like transportation to sustain that employment I think that there are some positive attributes and some aspects of the plan like increasing the earned income tax credit for childless workers this is something that's long overdue and I appreciate the rhetoric about simplification and standardization I think that there are other aspects of the proposal that would call into question how this vision would end up being implemented for example is signing each family within the system a case worker to help set goals to keep them accountable and impose sanctions if they did not adhere to this plan I think this is just sort of based on the assumption that people are poor because they're unable to manage their lives and their finances and I think this is so divorced from the reality of why so many families are financially insecure that this misalignment between the diagnosis of the problem and the treatment of the problem would not result in positive outcomes for poor families second what you said it's not just a I think oftentimes we focus on these programs and the people in these programs without realizing it's a larger problem of what programs provide what do low wage jobs provide and if we kick people off of programs and dump them into these low wage jobs where there's not a living wage and there are no benefits there's no health insurance now there's a source of health insurance but there's no help with childcare and all these other services that people need that we can't as you're saying we can't just simply push people off of programs when there's no supports on the outside that's just not a tenable proposition I guess I'd make a couple of points one is I'll take it as a positive that Paul Ryan actually submitted a plan to reduce poverty in America that means that across the ideological spectrum there's an interest now the devil's in the details and I think there's a rare agreement but there is on expansion of the earned income tax credit reducing the age expanding benefits for someone who's not part of a family but a single household which affects a lot of people with disabilities but I think fundamentally when I read your book what really I thought it captured better than probably anything I've read in years and were actually the personal stories we experience every day with work in the National Disability Institute and that is a lack of understanding of the extra costs every day of living with a disability because of those extra costs the asset limits are a farce they're absolutely shown no understanding that what researchers have proven over and over again to raise a child with a disability depending on the nature of that disability two, three can even be ten times the cost of raising a child without disability for an adult like your sister-in-law a long life we hope ahead of her the cost she will have to face and her family with your brother will have to face two to three times the cost other families may face our social policy isn't aligned to support that reality it's not a part of what we do I think and I come across this repeatedly in reporting I'm sure you guys come across this issue too that people will make the argument that the long-term benefit so overwhelms the cost to society I mean the cost of maybe increased payments that we have to make or supports for these families that we would get more money back actually in taxes that people would pay if they were able to work the same thing like I say with your brother why do you think that argument just doesn't sell is it just that the public policy is to just choose short-sighted or why can't that argument be made that in the long run society would be better off if your brother and sister-in-law are supported in a way that they could in fact work their way up into the middle class and not have to as you say impoverish themselves just to survive yeah well a lot has to do with what you think the causes of poverty are are they individual shortcomings or are they systemic reasons and I think there are many policy makers who believe that's because of individual shortcomings these people just don't want to work and so on and that's not the case so I think that's one issue I think rather remarkable and may play out over the next several weeks with the lame duck session of Congress there is a piece of legislation this is the fourth consecutive term of Congress that it has been put before the Congress it's called the ABLE Act the Achieving Better Life Experience Act it will create a tax-advantaged savings program for individuals with disabilities could be set up by a family could be set up by the person with a disability friends otherwise that will allow savings that not only can grow without being taxed on when you take the money out but will also recognize the extra cost of living a life with a disability it could be for higher education it could be to help with employment transportation extra cost of healthcare purchase of technology personal assistance services this bill surprisingly has 350 members of the House of Representatives who have signed on as co-sponsors and it has 70 senators why did that happen I think that this is one of those really behind the headline stories of incredible persistence and determination across the disability community people with physical disabilities people with sensory disabilities people with acquired disabilities versus at birth and it didn't happen overnight this is the you know this is the third or fourth try at this now in the closing hours before the August recess they knocked down who was eligible from anyone up to age 64 who could create an able account or have an able account created to you had to be age 26 or younger and so that eliminated lots and lots of people and what was the reason cost so there's a mixed story there I think if it does pass this to me will once once it plays out take care of the issue for some people but not everyone many many people will not have the money to put into this type of account so this does not eliminate at all the need and the compelling arguments for eliminating asset limits and second what Andrea said and you know I think the lack of traction for a lot of the policies that we're advocating on behalf of I mean it has to do with basic mistrust of people in poverty and an understanding of who's deserving and undeserving if we were making policy based on data our social safety would look very different than the way that it does it would be much more robust people at a much higher level rather than imposing a level of destitution that makes it very challenging really for anybody to ascend out of so instead of having more robust more flexible social safety net what we have instead is one that imposes asset limits and requires families to document their lack of resources even though we know this is contrary either to their interest as well as to the state's bottom line and we also see sort of the pervasive uptake of things like drug testing for welfare recipients I mean which has shown really the exact same outcomes of asset testing states are ending up having to pay out reimbursements for the cost of the test to a level that far exceeds whatever they're recouping from loss benefits so we're not talking about data we're talking about ideology and I think until there's a major shift in that direction we're going to continue really the same trends that we're seeing now so I'd like to turn it over if we have questions from the audience yes oh actually if you could just wait for the mic yes so you know better than I do yes thank you hi my name is Dave Bryce I'm an educational consultant working in urban areas so I see this play out although it's not just in urban areas all the time so my question is this kind of preface it this way it seems at times we have a federal government that is dysfunctional and has an empathy temperature about 11 degrees less than that outside and we see that play out at the state level now here we have a program we have federal and state involved so to anyone on the panel would it be better if just it were controlled by one that is my first question in other words does the convolution of the two enter into problems and secondly kind of obviously not going to happen but suppose your phone rings cell phone rings at the end of this and it's President Obama and he said I was I heard you had this talk and I'd like you to just give me one piece of advice that would really be a start for helping people get out of this safety net trap what would you tell him so both of those questions if you would please thank you I wanted to say on the state versus federal issue there's a chapter in the book where I talk about the tremendous variation across states in the way these programs are run eligibility criteria benefit levels and so on and I have my political science colleagues have said your chapter is very ambivalent about state variation in the sense that if we had a uniform policy and it was Massachusetts level to my mind, fantastic if we had a uniform policy and it was Texas level not so good so you know that's the problem with uniformity is at what level is the uniformity taking place and then in terms of your specific question federal versus state there's a lot of coordination coordination issues that are very complicated and add to this general level of complexity as for President Obama invites to him lift the asset test for all the federal programs at least sort of a good answer since we seem to have moved to an age of executive order lift the asset limits by executive order and let the Congress challenge back as to whether he has the authority to do that I would agree with you but I would say this unknown piece of legislation that I talked about the achieving better life experience act which although they brought the eligibility down so you would have had to acquire the disability only up to age 26 is a foot in the door that for the first time recognizes there are extra costs of living a life with a disability and we're not going to means test the entitlements we're going to let you hold on to that whether it's Medicaid whether it's food assistance whether it's housing assistance or other things it's a step in the right direction and it's really an educable moment for everyone to step back and think about that may happen to me and my family and this is a much more rational social policy but it will only help some and one can't do that without lifting the asset limits for everyone I'm very happy to endorse the idea of eliminating asset limits wholesale as for state variation I think that you know on the whole enabling states to be able to make calls on their own policies is sensible and something that we see play out in positive ways 36 states have completely limited their asset limit for SNAP this is something that attempted to be discontinued in the last reauthorization of the farm bill but has persisted I think what we're missing is reasonable standards about where states are able to set those eligibility criteria I think for the most part they're far too low and just as we have in the context of say education is something that we don't have right now Charles Hughes I was just wondering if you saw cash diversion lump sum cash payments playing any kind of complementary role you both mentioned I think emergencies like repairing your car meeting rent do you think that has any role to play in what you envision the safety net being cash payments from source could you use the mic sorry it's through TANF so whoever is administrating TANF at the state level some states have the program some don't and it's expanded since it was authorized with the 96 welfare form just wondering if you thought it could help with some of these emergencies and the lack of savings that a lot of these families have because they're prevented from saving yeah I'm not familiar with that program so it sounds like if there is emergency that they can get a loan is it a loan or a grant from a lump sum payment sounds like a great idea I'll just say one thing about the lack of assets is helping people meet emergencies might be a good thing but there's more to assets than just that you know assets have intergenerational consequences you know economists have done studies looking at low income households and low income households that have higher assets those children have later on in life better economic mobility than the low income households that also have low assets so it's not just about meeting a given emergency it's about what are the prospects for this family in general and what are the kinds of investments they can make in the next generation as well so that program is a nice start but I think it's not a replacement for the value of sort of having an ongoing sort of assets at your disposal I would jump in and say that there are probably other mechanisms rather than this cash advance which effectively what it is through TANF only about 40% of eligible families are even participating in TANF it's a very limited tool I think something that would probably help meet the moment meet the financial needs as well as help families sort of their lives that I think is incredibly limited within the public assistance system based on these kind of rules that limit their access to other kind of financial resources is just expanding the kinds of policies that we have for people on the upper end to families on the lower end you know the ones that expand access to financial products and incentives that has been demonstrated to be successful in places where it's been practiced the city of New York since 2008 has had a program called Save NYC it's been subsequently there are cities now with Save USA and you know effectively you show up at tax time you file your taxes and you're given the opportunity to get to get a match if you set aside you know a few dollars of your tax refund and save it for a year and you know so far it's been usually successful you know in the first few years you know 80% of the participants successfully save for the entire year and they saved about $600 of their own money and these are among families whose average earnings were about $18,000 and this is $18,000 in New York so this is New York money not the rest of the world money so their researchers are incredibly limited they still manage to do this successfully so you know I think I think if we operated from if you build it they will come kind of perspective extending these kinds of incentives and access points would be would help families have these kind of buffer and be able to make these longer term investments Hi I'm TJ Sutcliffe with the ARC thank you so much for the book and for today's panel I wonder if you might comment on beyond sort of the added costs of having a disability what I think of as sort of the time tax associated both with trying to navigate some of these systems as well as the time tax associated with living under an asset limit where you have to so very carefully manage both all of your income as well and the flow of your income as well as your assets which can be in and of itself I think pretty complex yeah I have to say you know watching my brother and sister in law operate it well first I should say they were actually living apart for two years because one thing for which there is no public help at all is renovating your home for wheelchair accessibility so friends worked nights and weekends for two years to renovate their home so with Dave and Marcella living with different relatives in the meantime now that they're back under the same roof you know the time crunch is as acute or even more acute than the money crunch and I realize that the way that you can make a really tight budget work is if you substitute your time to cook from scratch if you make your car parts from metal you know sheet metal and yeah the time crunch is so so severe and exacerbated by the fact that when they did move back in together the state actually cut her personal care hours because the assumption was that well the husband will do more of the care so that's cut into his sleep well it's cut into a lot of things yeah and so they face a time a time crunch which is just unbelievable and I think as you made a point in the book they have a big support system around them you're not talking about just their own time it's all their friends time and family time you wonder how anybody who didn't have this big support system could ever survive right she has a large family that participate in her personal care and they have a large number of friends this is where we grew up these are friends from elementary school who are picking up my nephew and taking him around town and so on and if we're not for that support network sometimes people ask me why don't they move to a state with better provision well one problem is that some states have time limit or you know there's a gap after you move to the state before you can receive services a gap they could not afford to cover on their own but the other thing is they can't leave this network behind one of the most generous states provisions doesn't come close to meeting all of your needs that are filled in by friends and family who they couldn't possibly leave behind there are so many anecdotal examples I think of over the years where one of the breadwinners husband or wife gets a great job offer in another state but they're raising a child with a significant disability they cannot take that offer on because a different set of benefits writing lists sometimes two years sometimes ten years and so again about where you live in this country is going to affect you in dramatic ways when you're facing the kinds of challenges that your family story brings us Rachel one thing that you brought up you were talking about how only about I think 40% of the people who are eligible for TANF are actually on the program is that the numbers and that's true of most social programs that a very limited portion of the people who are eligible are on them and do you think it's because of the asset tests or the other rules or is it just because it's so complicated or is it because people don't really know that they exist is it because the state or the locality doesn't do a good job at getting the message out what is the main thing that's stopping so many people from participating in these programs okay it's a constellation of barriers for programs like TANF or child care I mean it's a resource issue you know yeah absolutely you know TANF is block granted it has not been updated for inflation spending hasn't been updated since 1996 even though demand has in fact gone up we had a recession a lot more people had increased need but you didn't see the program go up and a lot of it was because the resources are just constrained in that particular way sometimes it also has to do with the mechanism by which the program is offered even for SNAP which is a fairly robust comparatively participation rate at about two thirds of eligible households are enrolled and SNAP is still an incredibly burdensome process you know the amount of documentation you have to provide having to take time off of work having to go to speak with a case worker all this is incredibly involved and on top of that you also have the recertifications and it's incredibly time consuming and disruptive I mean this is in contrast with programs like the EITC you know check a box on your tax form and participation in that program is substantially higher because that is the mechanism by which we also distribute it tax incentives to higher income families this is a very standardized low bar and I think if this is something that we could replicate at a larger level hopefully you would see participation in these programs increase as well as provide for funding structures that allow need to be met in the first place related to the earned income tax credit we've been working with the IRS for the past 10 years we've helped over 2 million people with disabilities for the first time because they were uninformed actually access the earned income tax credit receive over 2 billion dollars in tax refunds collectively over that 10 year period and despite all our media push despite our collaborations with all kinds of organizations across the country both with people with disabilities and low income people without disabilities it's still running about 20% are leaving billions of dollars not individually but collectively on the table that the earned income tax credit was supposed to make it gets back to your point is just the layers the maze the rabbit hole whatever you want to call it is back to the question is who has the time who has the knowledge and is that really the purpose of our social policy to make it more difficult or actually to try to get people the social safety net that they need Dave Walkster research institute for independent living in the case of your brother and your sister-in-law did SSDI have any role in alleviating problems that's a very good question so to be eligible for the social insurance programs SSDI, Part of Social Security and Medicare which does provide health insurance for permanently disabled people in addition to senior citizens you have to have worked enough quarters to be considered an insured worker and because my sister-in-law had gone back to school she had not worked enough quarters to be an insured worker so she was not eligible for SSDI or Medicare now as it turns out it's a little moot because even if she were in Medicare there's a couple of problems Medicare has a 24-month waiting period for the disabled which is really a 29-month waiting period because you have to wait five months to be eligible for SSDI and then the 24-month waiting period for Medicare starts and so during that period often times people have to go on Medicaid anyway it's the only form of health insurance and then for her there's the additional difficulty that she needs personal care assistance and Medicare does not cover that on a long-term basis so even if she had been an insured worker she might very likely have been on Medicaid in the end to get that set of services I just wanted to go back to your example about you said your brother spent two years trying to make their home accessible and you said no public program covers that this is again about where you live so in New York City in Austin, Texas and I could name about 12 other cities around the country they're using HUD community development block grant funds just for that purpose and help hundreds of people in their respective cities that doesn't meet the full demand but it's again about the complexity of all of this where do I find this out, who do I talk to how am I going to learn it's pretty difficult there's actually a wonderful book a new book by sociologist Sandra Levitsky called caring for our own which is about long-term care issues and she interviews adult children of Alzheimer's patients and their struggle to get services for their parents and one of the central themes is you know in a federal system we have some programs at the federal level some at the state level, some at the local level there's no central clearinghouse of information it's very difficult to figure out what services are available what are you eligible for it's just difficult to negotiate the system because it's so complex and decentralized although some places aren't they trying to try and coordinate it a little bit more like having a one-stop shop I thought some states and localities what's now called the administration on community living which is a part of the US Department of Health and Human Services they've created a network of what are called aging and disability resource centers there aren't enough of them many people have never heard of them and so you know again you have further challenges under ACA they created something called patient navigators and now workforce opportunity and innovation act we created something called disability program navigators what does it again tell you about social policy when we created this rabbit hole you jump down or find yourself in and that now we're going to pay for navigators because you can't figure it out yourself lots of different kinds of navigators it sounds like and get the navigators to talk to each other right right right and I'm sorry we have another question here so it seems like two of the themes we've come up a lot today one is this idea of people making the policy or implementing the policy not fully understanding what's happening to people on the benefits and then the people who are trying to receive the benefits maybe not understanding the details of what's happening sort of on the higher level and what actually exists and how to access it so I was curious what solutions you all have seen or ideas that you have of how to improve the lines of communication between those two groups there there's a wonderful example of a technology platform that actually was created with funding from Robert Wood Johnson Foundation in the US it's called TIES, TYZE Personal Networks and it's based on this basically what your brother and sister-in-law have created informally it provides a technology platform I would consider it something between LinkedIn and Facebook but very simple and elegant in design and it's connecting the paid caregivers with families and friends it has a calendar of events it has a vault where you can lock up important documents list of medications doctor's list if you're in an emergency it has a message board but it's about just trying to improve communication between that network of people that might really be globalized there are 10,000 TIES personal networks in Canada it was proven to actually reduce social isolation and actually reduce healthcare costs because it eliminated visits to the emergency room it eliminated things that happen when people don't take their medications because no one reminded them so it does a lot of things and we're actually working with them now to try to bring us to the United States there's some other sort of platforms that are taking place within the public assistance space Code for America has been very active in creating local resources that families can tap into to identify things like where they can use their TANF EBT card without facing withdrawal penalties this is something that unfortunately is pervasive within the way that a lot of means tested benefits are distributed a lot of them are becoming based on cards and you have usage fees you have withdrawal fees basically it's an access fee on your public benefit setting aside all the issues related to that having an app that allows you to identify where you can access your benefits without having to face these fees is important again you have to know that these things exist and they don't exist everywhere so there are some very severe limitations on how beneficial they can be and again I think Michael goes back to your point I mean what does it say about our social assistance system that we have to engage such a broad community of people to help people access the benefits that ostensibly that they're entitled to so we're coming to a close and before we leave I was hoping that Andrea could you just talk a little bit about at this point looking forward if things don't change what do you see as the prospects for your your brother and sister in law and their child their young child how are things going now and what do you see as their future yeah well there are good aspects I mean they are so happy to be under the same roof now finally and my nephew is very cute I'm sorry I don't have a power point slide of him it's very phonogenic important that's right so there are some positive aspects you know there's been wonderful generosity in the community when they did rebuild their home a lot of the materials were donated or provided at cost he goes to preschool several days a week basically the preschool associated with our elementary school took him on as a scholarship student so he has a place to go when my brother is at work so there are positive developments in that sense it's also they're confronting a lot of challenges now as I mentioned her personal care hours have been cut now they are living under the same roof and which they've been doing since April my brother is really exhausted because he gets up every four or five hours to meet her needs and never gets a full night's sleep and so we're trying to do right now is figure out some system of respite care just so he can go and sleep for a weekend at a friend's house on a regular basis trying to figure that out not sure the source of that's going to be and then you know long-term you know she was in nursing school she would love to go back to nursing school she could be a floor nurse but there's many things that she could do patient education reading films and so on it's unclear whether the nursing program will allow her back in or whether the state of California would license her as a nurse so that's a set of challenges you know what could she do she's a very bright person you know and like I said she's in her mid 30's she has decades to give to society if only we could figure out a way for her to do so and then there's a question of my little nephew I will make sure that he wants to go to college, he can go to college but under the existing system that's not a given I'm just lucky to be in a position to try to make that happen for him I was wondering if it would be prevented from doing that actually well once he's 18 I can help him I just can't help him now officially right so good and bad things looking forward I really want to thank you so much for sharing this story and it's just really an amazing story and an amazing illustration of what's going on what many people face and thank you Michael and Rachel thank you guys