Episode 11: Protect Our Care

What’s next on the healthcare front, what repeal would mean for people with disabilities, how one Arkansas woman is fighting back, and more. Plus, school-lunch shaming. Subscribe to Off-Kilter on iTunes.

This week, House Republicans took a deeply unpopular step toward repealing the Affordable Care Act and ending Medicaid as we know it. Rebecca and Jeremy unpack — and vent about — their so-called replacement plan, and what comes next. With millions of Americans worrying about what this means for their healthcare, we air an encore presentation of two women with disabilities and a mother with a disabled child who stand to lose everything if Medicaid is dismantled. Meanwhile, Trump is trying to sabotage the ACA in other ways — including subsidizing states that refused to expand Medicaid. Rebecca speaks with an Arkansas woman who stood up to Senator Tom Cotton at a town hall a few months ago by sharing why the ACA is vital for her and her family. And finally, the nationwide trend of school lunch shaming, and what New Mexico lawmakers are doing to curb the practice.

This week’s guests:

Jeremy Slevin, Center for American Progress

Judy Solomon, Center on Budget and Policy Priorities

Bettina Elias Siegel, journalist

For more on this week’s topics…

The first and second installment of Bettina Elias Siegel’s two-part story in the New York Times on school-lunch shaming (both are a must-read).

What the G.O.P.’s healthcare bill means for people with disabilities.

President Trump’s dealwith Florida lawmakers that practically subsidizes their refusal to expand Medicaid.

This program was released on May 5, 2017.


REBECCA VALLAS (HOST): Welcome to Off-Kilter, powered by the Center for American Progress Action Fund. I’m your host, Rebecca Vallas. This has been a particularly dark and difficult week for a lot of Americans. People who are scared of losing their health care, people who have been working and fighting everyday passionately to protect the Affordable Care Act from repeal. But the House moved forward and finally did vote to repeal and as they put it replace the bill with something that is just a shell of what the Affordable Care Act does in terms of protecting people with pre-existing conditions, people with disabilities, people who turn to Medicaid because they are not able to afford the health insurance and the services that they need. Throughout this episode I will speak with Judy Solomon of the Center on Budget and Policy Priorities about other ways that the Trump administration and Congress are working to sabotage the Affordable Care Act in addition to legislative efforts to repeal it. I will also speak with a woman in Arkansas who passionately lectured Tom Cotton at a recent town hall about what she stands to lose. And we’ll air an encore presentation of three women speaking about what Medicaid means to them, given that Medicaid has gotten so little attention throughout this latest chapter of the ACA debate.

But first I’m joined by Jeremy Slevin to unpack what happened with this week’s vote, where things go from here as the conversation moves to the Senate and some of the reactions to the vote by both Republicans, who view it as a victory, and by other Americans who have been railing against what the House has just done. Jeremy, thanks so much for joining the show. I’m in such a mood I didn’t even call you “the Slevs”.

JEREMY SLEVIN: I know, it’s not a “the Slevs” week.

VALLAS: It’s not a “the Slevs” week.

SLEVIN: It’s a full names week.

VALLAS: It’s a full names week, I’m in the same place. So I have to say, I know we need to sort of ground this in what happened and I want you to do that but I can’t stop thinking about an op-ed that was published in the Washington Post the morning after the House voted to repeal the Affordable Care Act by Cathy McMorris Rodgers, she’s a Republican. Part of Republican leadership, she represents Washington’s fifth district in the House and she’s the chair of the House Republican Conference. She has a child with a disability and she often speaks very publically about that. His name is Cole. He’s had a disability from birth and she is viewed by many in the House Republican Caucus as sort of their go-to when it comes to health, when it comes to disability policy because of her family’s situation. But she wrote an op-ed explaining why she voted for repealing the Affordable Care Act and replacing it with the so-called American Health Care Act. Notably saying the bill that they have now put in place, well not put in place but voted for won’t prevent, I’m quoting, “won’t prevent you or your loved ones from accessing the care you need.” And she invokes her child, Cole, by saying he was the inspiration behind the American Health Care Act. So, just Jeremy, help me out here.

SLEVIN: So what springs to mind when I read this stuff is at a certain point people are going to find out that they’re not telling the truth. The bill does not prevent insurance companies in states for charging people with pre-existing conditions as much as they want.

VALLAS: It doesn’t even just not prevent them, it actually restores their ability to do so which they were prevented from doing by the Affordable Care Act.

SLEVIN: Effectively denying coverage for many people with pre-existing conditions because as we understood before the Affordable Care Act, if your health care plan costs $70,000 a year and you’re making $50,000 a year, you can’t afford health care if you have a pre-existing condition. At a certain point, anyone with a pre-existing condition, which is nearly half the country, is going to find out that what they’re saying about this bill is not true. And so why even, why say it? It’s so cynical, it’s that they want to get the bill passed and then people will have to reap the consequences.

VALLAS: Well it’s not even just, if the op-ed runs the day after they actually pass the bill, at this point it’s not even about getting the bill passed, it’s about —

SLEVIN: Well, I assume it’s for the Senate.

VALLAS: Well, it’s for the Senate but isn’t it also because, I mean frankly, Republicans who voted for this bill are dodging their own constituents because of how deeply unpopular it is and how clearly their constituents made it known to them that they didn’t what them to do this. Town halls for the entire year of 2017 have been dominated by protesters, I mean they’re called protesters but constituents screaming in many cases at their members of Congress saying if you repeal the Affordable Care Act I will die. My husband will die if the Affordable Care Act hadn’t been in place my husband wouldn’t be alive today. Stories like that abound and now they’re actually afraid to confront their own constituents because of how unpopular it is. So is this an effort to try to save some face?

SLEVIN: I think it’s also, she bills it as a response to Jimmy Kimmels’ famous monologue about his son where he talks about his own pre-existing condition and how we should protect kids like Billy Kimmel who has a pre-existing condition. This is an effort to combat the emotional appeal of all these people saying “I am going to lose health care, my kid who has a disability or my kid who has a pre-existing condition is going to lose health care.” It makes me so angry because it’s a bald faced lie. It’s just, they genuinely will lose health care! They will lose coverage! And to invoke your own son when you’re a member of Congress who can afford this coverage and until it was revealed that they exempted themselves from the plan was going to be covered under ACA protections under this bill. You can afford to buy health care for your kid. Millions and millions of other Americans cannot afford that.

VALLAS: And that’s the thing that makes this so outrageous, right. So she says, “Protections for children such as Cole Rodgers and Billy Kimmel, Jimmy Kimmel’s son, have long existed as they should. And despite what people are saying House Republicans aren’t seeking to strip these protections or anyone’s protections away.” You can only actually look at that sentence, those two sentences, as true at all if you are someone of great privilege which she and her family are lucky enough to be. No part of me wants to say that this is not true for her, because I think it probably has been true for her, she hasn’t had problems accessing coverage for her son. They’ve never been, they’ve never had to worry about whether he was going to be able to get the services that he needs to thrive with Down Syndrome. But her situation with that level of privilege is not the norm. It’s not what people like Marta Connor, who’s going to join later in the episode, speaking about her own child Caroline with Rett Syndrome. It’s not their norm. It’s not Anastasia Simosa’s norm, who also will join later in the episode, it’s not Andraea LeVante’s norm. Medicaid is critical for these folks because accessing health care, particularly for the people with disabilities who have additional needs beyond just basic coverage, it’s just, it’s not affordable.

SLEVIN: This brings us to another point that I think has been lost in this whole repeal effort, especially in the, what we call zombie Trumpcare, the second pass which was successful.

VALLAS: No longer a zombie.

SLEVIN: Is that ignored was the biggest part of this bill, which was effectively ending the Medicaid guarantee. Which the CBO said would kick 14 million people off of Medicaid, take away their coverage in ten years. Medicaid, of course, has been around since the Great Society, it’s over 50 years old. This is bigger, as big as rolling back the ACA is, undoing Medicaid is bigger than that. And as you just pointed out, it is how people with disabilities are able to thrive in their communities and survive without being in institutions.

VALLAS: In particular because there aren’t any other sources of long term care coverage. Long term supports and services that people, in many cases, with disabilities need to live in their homes, to live in their communities, to work full time. I’m getting a little emotional here Jeremy, so bring me back. Bring me back to talking just about what happened here. It is pretty outrageous how little attention Medicaid has gotten in this overall debate, considering that it is the biggest source of cuts that Republicans are moving forward. And we expect to see more in congressional budgets that are coming in the next few weeks. But I want to walk us back. What happened this week in terms of how close was the vote and where does it go from here?

SLEVIN: OK, so brass tax.

VALLAS: Brass tax, take away the emotions.

SLEVIN: It passed with 217 votes. And many people know the normal threshold to pass a bill in the House of Representatives is 218. But because there are open seats like Tom Price who was a representative from George who is now the Secretary of Health and Human Services, they only need 216 to pass it and they got 217. So they barely squeaked by. And if you look at who voted for it, they actually got fewer moderates supporting it. Barely, they had 34 moderate conservatives supporting the previous bill and they got 33 yes votes. So there wasn’t a big shift in moderates. The biggest change was that because they rolled back protections for pre-existing conditions they were able to get the really, really right wing hardline Freedom Caucus. Only 7 hardline conservatives supported the old bill, you had 30 who voted yes, almost all of the Freedom Caucus supported and that’s how they were able to eek out this victory.

VALLAS: So from here, the bill obviously, just to reiterate, the Affordable Care Act is still the law of the land and the protections that it puts in place, no matter whether you have health coverage through the Affordable Care Act or whether you have it on the market, whether you have it through employer provided plans, those protections still exist, they are still in place, they’re still the law of the land. But at this point, the bill goes to the Senate.

SLEVIN: Correct.

VALLAS: What do we expect to happen there?

SLEVIN: So because this is done under this budget reconciliation gimmick, effectively, they only need Republicans to pass it. And that’s why they were so desperate to pass it in a timely manner because they want to get to more stuff. And they want to pass it through the budget process so they need 50 votes. They have 53 Republicans in the Senate, so they can afford to lose about 3 of them. So the question is though, there are a lot of, compared to the House, the Senate Republican caucus is a lot more moderate because there isn’t gerrymandering you have people like Dean Heller, who is up for election next year. You have people like Susan Collins from Maine, who is seen as a moderating force. You have people like Murkowski from Alaska. And then you have these more Libertarian leaning Republicans like Rand Paul and Mike Lee. Rand Paul has already said he didn’t like the House version. I don’t want to give a handout to the insurance industry, he basically said. So what we expect the Senate to do is to basically write their own bill. To go back to square one, write their own repeal bill. But then if they do that then the House has to approve that. So this fight is just beginning and if, judging by the resistance and judging by the fact that this only had 17 percent approval rating, I would not be too optimistic.

VALLAS: It being the Affordable Health Care, or not the, the American Health Care Act.

SLEVIN: The American Health Care Act, the Affordable Care Act, which is the law of the land, is now at its highest approval ratings ever because more and more people are seeing how valuable it is to them and their family.

VALLAS: And particularly Medicaid, given that Medicaid now has outpaced Medicare in terms of how many people it helps. Almost 75 million Americans helped by Medicaid at this point in time. So truly a central piece that needs to get a lot more attention. So Jeremy if you had to look into your magic 8 ball, what do you think happens?


VALLAS: Give me good news.



SLEVIN: So my biggest worry is that it will pass the Senate. I think there is a, I think if there is not a massive resistance, especially against these 2018 Republicans like Dean Heller, it will pass the Senate. I don’t think that’s a done deal. And then we have to make sure it never gets back to both chambers where they can pass it. But again, it’s not over yet and we can easily stop it in the Senate.

VALLAS: Well, a call to resistance, a call to everyone out there who benefits from or has a loved one who benefits from the Affordable Care Act, who cares for any reason whatsoever about Americans having access to the care that they need and that they deserve, no matter how much money they have in the bank. Call your member if you haven’t already. And if you need help figuring out how to do that, you can go to Trumpcare tool kit online, which has all the sorts of resources to help you do that. So for the rest of this episode we are mostly dedicating it to health care, mostly talking about where things go from here. Both legislatively in terms of ACA repeal but also other things that Republicans including Donald Trump are trying to do to sabotage the Affordable Care Act in every way that they can to make their false statements that the bill, or that the law is imploding sound true. And hearing a lot from the voices of people who would be impacted so don’t go away and also as a bonus, school lunch shaming is a trend sweeping the nation. What New Mexico policy makers have done to put that in the rearview mirror. Don’t go away.


VALLAS: You’re listening to Off-Kilter, I’m Rebecca Vallas. Medicaid has gotten dramatically less attention than many other pieces of the Affordable Care Act repeal. For that reason, I’m airing an encore presentation of interviews I did with three women, two women with disabilities, one woman who is a mother of a child with a significant disability and a severe illness to explain what Medicaid means to them and what’s at stake if this bill becomes law. Let’s take a listen.

ANDRAEA: So I am a full time wheelchair user, I was diagnosed with a physical disability when I was two years old actually. And I’m 33 now. And so upon leaving home at 18 to pursue education and just pursue career, I started, I became a recipient of Medicaid and Medicaid literally provides for my day to day living. So it is what allows me to get out of bed everyday, it’s what allows me to go to work everyday and be a contributing member of society actually. Just the opportunity to pursue the things that I’m passionate about. About ten years ago I left, kind of, the area that I grew up in to move to Washington, D.C. for a job. And little, I didn’t really know all of the nuances of what it would look like to live independently, to have the care that I needed. And thankfully the Maryland Medicaid system stepped in and so it allowed me to have the appropriate care, not only the appropriate care, meaning having people to come in everyday to assist me, they also provide for medical supplies that I need on a day to day basis as well. So, quite honestly, it makes all the difference in the world, Medicaid does. If it were removed, we would go back decades and decades and then it would require likely institutionalization, which we’ve worked so hard, people, Americans in general, have worked so hard to ensure is not a requirement. Medicaid allows me to live in my community but not only to live in my community but to be a contributing member of society and that’s what I think we all deserve.

ANASTASIA: Similarly to Andraea, Medicaid allows me to live in my community and we, things like the Individuals with Disabilities Education Act and the Americans with Disabilities Act, we would not be able to, those pieces of legislation wouldn’t matter essentially to us in a lot of ways if Medicaid stopped existing. Because the only way for me, much like Andraea mentioned, to exist every day, let alone existing outside of my home, and outside of an institution, hospital or a nursing home is to have the in-home care that Medicaid provides. When we were young, it helped my parents get a little bit of respite and assistance, and now I’m 33 and at the point where even though I do still live in my parents’ home, they’re not physically capable of providing the level of care that I still, that my twin and I still require. So, much like Andraea it allows us to contribute to society in a way that everyone else takes for granted. I have been thinking about it this morning and I spoke earlier about how much the IDEA meant in helping me get an education and while I was talking about that I realized that again, that education wouldn’t matter if I wasn’t able to take that education and translate it into finding a way to live productively and happily in the community. Why invest in educating children with a disability? So if you’re going to start investing in us when we’re children, as should be the case of course, why would you then justify stopping that right at the point when we can take all that education and everything we’ve worked so hard to achieve to contribute back to society.

MARTA: So let me tell you a little bit about my daughter. Her name is Caroline and she’s 7 years old. She’s bright and funny and right now she’s all about the Disney Princess movies. So in a lot of ways she’s like a lot of little girls that are you know, her age. But unlike most typical girls her age, Caroline can’t walk. She can’t talk, use her hands, she can’t sit unassisted and she can’t chew because she has Rett Syndrome, a neurological disorder that essentially interferes with her ability to control her body. I never imagined that I would have a child that would depend on us for every aspect of daily living for the rest of her life. But I also never imagined that this little person would bring so much love and so much joy to our life. And she is our sunshine. But in addition to her disability Caroline also suffers from a long list of medical conditions. She takes ten different medications multiple times a day, she takes medications for her seizures, she takes four of them but she still has about 90 a year. She has to take medications to help her sleep because otherwise she would only get a couple of hours of sleep because Rett Syndrome essentially causes insomnia because the involuntary movements never stop. She also takes medication so she doesn’t vomit all the time. Before we found the right medication, she was throwing up about a dozen times a day which was tough.

And she also has, her body is pretty rigid, so she has to take medications to just help her muscles relax just a little bit. Caroline also has severe obstructive sleep apnea, which means that she stops breathing throughout the night. She essentially doesn’t take, she doesn’t fully inhale and exhale properly so she ends up retaining a high level of carbon dioxide. And so she uses a bypass breathing machine 12 hours a day, just to do what we all take for granted which is to breath and to stay alive. Caroline also suffers from severe respiratory complications, so she’s really susceptible to pneumonia, which is one of the leading causes of death in Rett Syndrome. And to just keep her out of the ICU and just to keep her breathing, she undergoes a couple of hours of lung therapies and treatments every single day, when she even has a slight cold we amp those up to almost nonstop round the clock. And that’s a lot of work. We have to try to squeeze in when we, you know, perfectly time when we feed her and ourselves but it’s not something that just one person can do by themselves.

So what usually happens when she’s sick is that since we only have limited nursing hours a day, my husband and I will both take off from work and just care for her. So this is, caring for her is a full time job, but Medicaid provides us with skilled nursing services. So this allows us to care for Caroline in her home, because she needs a lot of medical assistance. It also allows my husband and me to hold jobs and to take care of our family needs. Medicaid also helps cover the cost of prescriptions and co-pays and treatment and medical equipment that is not covered by our insurance and these costs usually add up to several thousands dollars each month. And the other thing that also was a surprise to us and we didn’t know about Medicaid is that it requires monthly visits from a nurse. And it was during one of those visits that we realized that Caroline has sleep apnea, that she wasn’t really breathing at night.

So because of Medicaid, we’re able to administer all of her medical needs at home. And she went from spending several weeks in a row in the ICU almost every time she caught a cold to just one hospitalization last year, which saves a lot of money. I looked at the bill once for just one ICU stay and just from what I saw, I know that other costs came in months later but just from what I saw it was something like almost $90,000 dollars. And so having the nurses at home and having the equipment is a fraction of the cost and I think a lot of people don’t realize that. So it’s only been in the past 6 months that I started to think of Caroline living past the age of 10 and that’s been a huge deal in our family because we’ve been, you know, I know that life has no guarantees and you never know what’s going to happen but just knowing that you have a child who has a limited lifespan, because that’s what you see in other Rett girls, is hard. And so you just take it day by day, and one of the ways that I’ve coped is just by, you know, not focusing beyond today or tomorrow even. And not really trying to image, what is, what will our life be like when Caroline is a teenager or hopefully an adult. But I’ve started to at least dream about those scenarios in a positive way. Because we want Caroline to be with us forever and just from looking at statistics it’s clear that, that’s not usually the case with Rett Syndrome but so, anyway. Not having Medicaid would be detrimental to our family financially. I don’t know how we would pay for all the Medical expenses. I don’t know how we would be able to go to work and you know, at the end of the day we want to have some semblance of a normal life and we want to work and we want to be productive taxpaying members of our society. And we want Caroline to be alive.


VALLAS: You’re listening to Off-Kilter, I’m Rebecca Vallas. All eyes may be on Congress when it comes to health care, but the Trump administration is quietly doing everything it can to sabotage the Affordable Care Act in other ways. Most recently, Trump cut a deal with Florida lawmakers that effectively subsidizes the state’s decision not to expand Medicaid under the ACA. Here to discuss this development and the broader implications it has for other state’s Medicaid expansion is Judy Solomon, the Vice President of health policy at the Center on Budget and Policy Priorities. Judy, thank you so much for joining Off-Kilter.

JUDY SOLOMON: Thanks for having me, Rebecca.

VALLAS: So, help us understand what happened what happened in Florida? There’s a lot of kind of, jargon and gobbledygook that gets thrown around when people trying to explain this but what’s going on and what did Trump do?

SOLOMON: Yeah, definitely a lot of jargon. So Florida has had something called the low income pool since 2005. And what it is is a pool of funds that are available to compensate hospitals for sort of, shortfalls in either Medicaid funding because of the rates they’re getting from managed care companies, and also for the fact that there are large numbers of uninsured people in the state. The pool originally was put in place when Florida moved to a managed care situation and so the state was able to continue making what are called ‘supplemental payments,’ to help hospitals out. But the goal all along was eventually to have the managed care companies pick up the full cost of care and then the pool would just become for people who were uninsured. So, it’s gone through multiple iterations, and in 2015, the Obama administration told the state that essentially it would no longer provide direct funding to hospitals for care that could have been paid had the state taken up the Medicaid expansion. So, in other words, they wouldn’t have to have all these uninsured people and they would’ve been paid directly for care. And in addition, the people in expansion would be able to get other care that isn’t provided through the pool, because the pool only pays for hospitals.

And essentially what the Trump administration just did is change that policy and say that, once again, they will pay states to pay hospitals for uncompensated care even though they’re leaving money on the table that the Medicaid expansion would provide for actual coverage. There were other parts to the change in policy. From the Obama administration, they also were changing just the notion that, trying to really tie payments to people. So in other words, not just giving hospitals lump sums of money, but making sure that the funding really followed care provided to people who needed it. And all of that has really changed. What was particularly interesting in Florida was the governor then went to the legislature and said, well now we can do all these other things, we can build a dike and I think raise spending on tourism because we’re getting, you know, this extra money from the federal government even though there is really no paper on this, there is no transparency. So it’s definitely a big concern and a move away from providing coverage to people rather than just lump sums to care.

VALLAS: Well, and rewinding back to the days of the Obama administration, which I will say honestly feel like eons ago at this point, the Obama administration argued that if Florida would simply just expand Medicaid, then fewer Floridians would be uninsured and then in turn there would be less uncompensated care. That was how they explained their decision and the way the policy was originally written. But it seems that what the Trump administration has decided to do is to say “screw it, we’re just going to reward you for not deciding to expand Medicaid and not play by the rules.”

SOLOMON: That’s right and it’s in the context of of course, the bill that they’re voting on. It is, which is also very similar with the multiple funds that are now keep getting layered on in this bill, there’s sort of funds that would go to states but they’re not tied to people. A fund for maternity care, a fund for behavioral health care, a fund for people with pre-existing conditions with really no rules on how those get distributed to states and then how what the expectations are for those funds to actually go to provide health care to people. It’s not, it’s not patient center because people will not have the ability to really drive their own health care if they have to depend on all these different pools of money going different places.

VALLAS: So obviously incredibly significant for Florida and for low income residents as well as the entire population of the state who will ever need health care or health insurance but much broader implications as well. Does this move by the Trump administration risk in your view setting new national precedent that could end up translating into consequences for other states?

SOLOMON: Yeah, I think so. Texas has a similar pool and some decisions pending, and a few other states as well. But I think you have to think about it in the context of what they’re also trying to do in terms of repealing the expansion and capping Medicaid funding which will affect all states and really limit the ability, I think, of the federal government to make these kinds of deals. And lower the federal funds available to all states, including Florida because of the capped funding and obviously not in Florida because of the Medicaid expansion. So it’s hard to know where the policy goes under their bill if it actually got enacted.

VALLAS: So this is just one of the ways that Trump and his Republican colleagues in Congress are working actively to sabotage the Affordable Care Act, no matter how things go in Congress. Whether the House is able to finally pass repeal, whether it goes to the Senate. How else are they taking action to sabotage Obamacare without legislation?

SOLOMON: So just on the sort of marketplace side, clearly they are playing games and holding the cost-sharing reduction payments hostages. Which is putting a huge amount of uncertainty into the market, into insurers as they try to figure out if they’re going to participate and what their rates would be if they do participate. So that’s probably the biggest. I think the continued effort at repeal sabotage, we don’t know what they’re going to be doing around outreach and enrollment for the next open enrollment period, they’ve already acted through regulation to shorten it considerably to only six weeks, which is going to definitely make it harder to have a robust open enrollment. The other regulations, making it harder to, for people who have to enroll outside of open enrollment because they’ve lost a job or lost other coverage or moved, making that harder. So, lots of things, I think that will affect eligibility enrollment, and the overall uncertainty has an effect.

And then on the Medicaid side, I think they’ve also, you know, told states it’s pretty much, invited states to submit Medicaid waivers with things like work requirements, we’re seeing really bad trends around what states are asking for in terms of time limits, work requirements, requiring premiums for very low income people, for example, Maine is asking for people, even with no income to have to pay $14 a month for coverage, which of course, they’re not going to be able to do. So I think all of that administrative activity is going to, as you say, it’s going to continue regardless of what happens with the bill and the hope is we can get some barriers put on these waiver requests because they’re going in a very alarming direction. Drug testing from Wisconsin, and you know, you just name it, they’re coming up with it in the states.

VALLAS: Judy Solomon is the Vice President for health policy at the Center on Budget and Policy Priorities. Judy, thank you so much for joining the show, especially during such a busy time.

SOLOMON: Thanks Rebecca.


VALLAS: You’re listening to Off-Kilter, I’m Rebecca Vallas. As the House took one step closer this week to repealing the Affordable Care Act, Americans across the country are scared and angry, and rightfully so. Debbie Goodwin of Arkansas is one of those Americans. As she told Senator Tom Cotton recently, at a town hall, without the Affordable Care Act, her husband could be dead today. I speak with Debbie by phone from Arkansas. Debbie, thank you so much for joining the show.

DEBBIE GOODWIN: Well thank you for having me.

VALLAS: So, Debbie tell me what happened at that town hall. What did you tell Senator Tom Cotton about the Affordable Care Act?

GOODWIN: My husband has several chronic medical conditions. And he has had memory problems off and on through the years but all at once last year he went to not knowing anybody, anything, where he was, nothing. And we, he’s had also, pacemaker, heart attacks, open heart surgery, and thank God that we had the insurance that we had because of the PPACA. Now I wanted Tom Cotton, I’ve sent him different things and we just lived, oh about, less than two minutes to walk to his house is from where we live. I want him to meet with our family. I asked him to do that. He hasn’t done that yet. I don’t understand why he’s ignoring us. Why he’s listening to a certain population of people but won’t listen to the population of people of the economic bracket I’m in, my family’s in.

VALLAS: So Debbie, what is it that you’re afraid of if the Affordable Care Act is repealed? What are you afraid is going to happen to your husband?

GOODWIN: Well, let me tell you. His health won’t continue improving, it will deteriorate. Medications will not be affordable. Our premiums are not going to be affordable for us. Our hospital visits are not going to be affordable, hospital stays, let me put it that way. The preventive exams are not going to be there for us, for him. The senior memory center that we are trying to get our insurance, the insurance we’re will, to help us pay more on. He won’t be able to go there and get the extensive exams that he needs and maybe get that help that will turn his whole life back around to more of a positive way of life. And it’s all due, because we are an economic status that Trump, his establishment, and the Republican party do not like. I don’t know why they don’t like us like this. I’m a retired teacher, special education teacher. He was an excavator engineer. We don’t take help lightly. It’s embarrassing for us.

VALLAS: So Debbie, the next step that this bill to repeal the Affordable Care Act needs to go through is to go to the Senate. And you’ve been trying to meet with Senator Tom Cotton and you spoke to him passionately at a town hall. What is your message to your Senator as he and his colleagues consider whether or not to follow suit as the House has done and vote to repeal the Affordable Care Act?

GOODWIN: Simple. Stop playing politics with my family and my health care. If he really, like I said, he works for us. He works for me. It doesn’t matter whether I voted for him or not. I’m an Arkansan. And he needs to work for all of us. He can pay attention, like I said, to that certain economic status, population of people. But he needs to sit down with my economic status of people and find out how we have been helped. What I want to say to them and to Trump and his establishment, I do not like your America. This is un-American, this is despicable. This is an outrage. And how dare you Tom Cotton, how dare you Donald Trump, how dare you discriminate against us because of our health problems.

VALLAS: Debbie Goodwin thank you so much for taking the time to join the show and I send all of my best to you and to your husband and your family during a time that I know is filled with uncertainty and with a great deal of fear. So thank you again for taking the time to join the show.

GOODWIN: Thank you so much for having me.


VALLAS: You’re listening to Off-Kilter, I’m Rebecca Vallas. Last month New Mexico governor Susanna Martinez signed a new law that protects kids against something called lunch shaming. Schools publically embarrassing children whose parents are behind on school lunch payments. Here to talk about school lunch shaming, a practice that unfortunately extends well beyond New Mexico is Bettina Elias Siegel. She’s a writer who focuses on children and food policy and her recent article, “Shaming Children So Parents Will Pay The School Lunch Bill” ran in the New York Times this past weekend. Bettina, thanks so much for joining the show.

BETTINA ELIAS SIEGEL: Thank you for having me.

VALLAS: So just to help us understand a little bit about what we’re talking about when we say school lunch shaming. What are some examples of this, why does it happen and how does it play out?

SIEGEL: So when we talk about lunch shaming, we’re really talking about any practices in the cafeteria that single out children who have meal debt. Who have an outstanding balance on their card or just don’t have the cash to pay. The most common practice is offering a child in that situation a cold meal, usually like a cheese sandwich, as opposed to giving them the regular hot meal that their peers are getting. That really, I think, is the most common manifestation of this phenomenon. But other practices that we’ve seen are marking the child on their arm or their hand with a stamp. And sometimes it can be something very neutral like a smiley face but parents have been told somehow that if you see the smiley face that means your balance is overdue. But sometimes it can be words that I think are pretty patently stigmatizing like ‘I need lunch money’, that actually happened to a kid in Alabama. And then sometimes kids have to wear wristbands, sometimes kids are denied a meal altogether, though I think that’s rare, at least for younger kids that’s rare. And then there have been anecdotal reports of kids actually being made to do chores in the cafeteria, almost to like work off the free meal or something like that. I think that’s really rare and it’s actually illegal in some circumstances but it does seem to happen, at least sometimes.

VALLAS: Brings back memories, of I guess it was the 2012 presidential election cycle when Newt Gingrich, who was then a candidate for the Republican nomination actually put forth something that sounded like a 21st century modest proposal by saying that kids who can’t afford to have lunch or their families can’t afford to send them in for lunch at school should be put to work as janitors in schools.

SIEGEL: I do remember that and that is an idea that I guess does have some currency with people, you know, who share his views.

VALLAS: And I’m sort of laughing as I say it because it does sound so ridiculous, right, it’s like work requirements for kids but I will ask though, seriously what do proponents of these school practices say is behind these policies? Why are they putting them in place?

SIEGEL: I’m really glad you asked that because you know, this has popularly become known as lunch shaming. But I truly do not believe that school food directors are sitting around the table every morning thinking, “How can we shame kids? How can we humiliate kids?” I really think that they don’t see it that way at all. You have to put yourself in their shoes. They are running these school food operations on an extremely tight budget. The program, in my opinion, is grossly underfunded. I think they would agree. They have to run it as a self-operating program, they’re not supposed to be taking money from the district’s general fund. So they’re run like little businesses and again, they have a very small margin and so they’re carrying a lot of, you know, bad meal debt on their books. That really can affect the quality of their program. The School Nutrition Association found that last year, three-quarters of the districts that they surveyed had some meal debt on their books at the end of the year. In some districts it was, you know, minimal, a few dollars. But in a large urban district it can literally run into the millions of dollars.

So you know, they have a real problem. And I really appreciate where they’re coming from. So, I think from their perspectives, they’re thinking, well, here’s a kid that’s come through the meal line repeatedly, hasn’t been able to pay, we’re going to stop giving him the hot lunch but we’re not going to let them go hungry, we’re going to give him the cheese sandwich. You know, they’re potentially seeing it as a very altruistic move. Or you know, we really need to nudge those parents to pay, so let’s put a stamp on their arm. You know, that’s better than a note that might get lost in their backpack. You know, you can see from their perspective that this seems reasonable. I think the problem, however, is regardless of the intentions behind the practices, we know at least anecdotally that it can be very stigmatizing to children. And so that’s really the issue.

VALLAS: So New Mexico recently took action, as I mentioned up top. They actually, so legislation was passed, it was recently signed into law that outlaws lunch shaming and this bill was called The Hunger Free Students Bill Of Rights. Tell us a little bit about the story behind this bill. Were there opponents of it and if so, who said no, actually we want lunch shaming to persist?

SIEGEL: So the bill was really spearheaded by a group called New Mexico Appleseed, which is an anti-hunger, anti-poverty group. They really conceived of it I think first and foremost as an anti-hunger bill. I think they were very distressed to hear about kids being denied the hot meal. And I should tell you that one way that this scenario plays out, and it sounds really draconian and awful, but if you think about it, it’s just a logistical issue. What happens is the child will get their hot meal, then show up at the cashier, then the cashier discovers the meal debt, then the cashier is put in this very awkward position of taking away the child’s meal and giving them the alternate cold sandwich. And so when you hear about kids having, you know, lunch ripped out of their hands, it’s awful but it really flows from the fact that the cashier is typically at the end of the line. So anyway, they knew about these reports, they were very distressed to hear about kids, you know, hungry kids not being fed. Obviously New Mexico has a very high rate of poverty and childhood hunger. So they really made this their mission to get this bill put together. So they spearheaded it, from what I know about the process they were very thoughtful in reaching out to all the stakeholders as they were drafting the bill, including New Mexico’s School Nutrition Association. So they really got the districts onboard from the get-go. It passed in the State Legislature, I think it was unanimous in the House, there was some opposition in the Senate. But overall, it seemed to really have bipartisan support. Which is very heartening. And then, as you said, it was signed into law earlier this month.

VALLAS: So a lot of what you did for this reporting and the piece that I mentioned that ran in the New York Times actually on the front page just this past weekend was just, it was the latest in multiple stories that you filed on this subject. You speak with kids who have actually been subjected to these kinds of policies. Tell me a couple of those stories, how does this actually play out in human terms?

SIEGEL: It was really interesting to be able to talk to children who’ve experienced this directly. And you know, just as you might imagine, as is the case for children in so many aspects of their lives, when they’re singled out from their peers, when they’re made to be different in any way, it can be really painful and really stigmatizing. So you know, I heard from children who, I talked to one child who is now I think in the sixth grade but vividly remembers you know, her years kindergarten through second grade where her family was in more difficult financial straits and she was getting the cheese sandwich on occasion and she still remembers it to this day. You know, in fact my story concludes with a mom of an adult son who still to this day will not eat peanut butter because he’s so closely associates it with his middle school experience, when, and this was now 20 years ago when kids were sent to something informally known as ‘the poor kids table’ where they were given bread and peanut butter to make their own sandwich. And it was so painful to him that he really won’t eat peanut butter, according to her. So you know, this I think really can have a lasting effect on children.

You know, I will say I did talk to some kids or parents of kids who said “yeah, my kid got the cheese sandwich. They kind of shrugged it off.” So it’s not universally, we can’t make a universal conclusion about how people react to this. But I think it’s understandable when you hear that kids do feel really humiliated by it.

VALLAS: So it’s not just New Mexico. This is something that’s happening across the country. You mentioned, and this is actually how it initially came on my radar was I saw some chatter on twitter about Alabama stamping kids arms which at least in what’s come across my desk and my awareness is the most outrageous iteration of this kind of lunch shaming. Much more extreme than the cheese sandwich that you’ve been describing. But I’m curious, are there similar efforts happening in states across the country like what happened in New Mexico recently, trying to push back against this. Is this something that advocates are increasing in awareness about? And is there momentum building around dealing with this in legislative ways or through other solutions?

SIEGEL: Well, so it’s interesting when I was researching the second of my two pieces for the Times, I learned that Minnesota in 2014, in a bill that was, sort of a different scope. It was really looking at giving school districts more funding to reduce meal debt, but they had stuck in a small amendment at sort of the end of it that said, essentially, we’re not going to do anything to stigmatize children. It was, I would say, a pioneering effort and laudable, though I have heard that in Minnesota, kids who are not on free or reduced price lunch with meal debt still get that cheese sandwich because again, they don’t see it as stigmatizing, they actually see it as we’re giving you food, we’re doing a nice thing. So that was I think, the first effort that I know of on the legislative scale. Then there was the New Mexico bill which really, I think, was groundbreaking because it’s so comprehensive and it really, it enumerates practices that they consider shaming that are now banned. They make it very clear that every child is to get a reimbursable meal, which you know, again, Minnesota did not do.

And the thing about the New Mexico law that was also really, important, is it really is focusing on how can we make sure that children who qualify for free or reduced price lunch get those benefits? It’s got lots of provisions to kind of, get kids on that, into that system. So to answer your larger question I heard from Senator Michael Padilla, the state senator in New Mexico who sponsored the bill, that when the first story came out in the New York Times about that bill, he was flooded with calls from legislators around the country seeking to use it as model legislation. So, you know, it’s way too early to know if those efforts will take hold, but it’s really interesting to hear that it’s certainly on states’ radar, I think, at least in a way that it wasn’t before.

VALLAS: Some folks listening to this may wonder why is it not enough that we have a free and reduced price school lunch program in this country? How is it that families who might be struggling to pay for school meals, how is this going on? Aren’t kids who are low income supposed to be getting help already? How is this still a problem, notwithstanding that policy?

SIEGEL: That’s a great question. So there’s really two answers to that. For the kids who qualify for free lunch, you think, well hey, they really should have no problem with meal debt. The problem is, of course, getting those kids signed up. And there can be many obstacles to that. A parent might not understand or be able to read the lunch, you know, the benefits application. It may never reach them. They may never get access to it. They may be afraid to file because they have an illegal status. They may simply be negligent and just not do it. So that’s the problem with free, children who would otherwise qualify for free lunch. Then there’s this category of kids whose families live just close enough to the poverty line that they qualify for reduced price lunch, but they still have to come up everyday with a 40 cent copay for lunch. And you know, to some of us 40 cents a day doesn’t seem like a lot, but if you have several children and you’re living you know, on an extremely tight budget, that can really add up. And so those kids can get hit hard, even though they’re already signed up for benefits. They can still you know, eventually accrue meal debt. So I think, really, that’s the answer to the question.

And you know, there are legislative provisions that are designed to try to eradicate this problem. So there’s something called the Community Eligibility Provision, which came out of the 2010 Healthy Hunger Free Kids Act, which is the federal legislation that overhauled the nutritional standards for school meals. And under the CEP, if a district is sufficiently high poverty or if a school is sufficiently high poverty, and there is a formula for calculating that, then everyone in that school or everyone in that district gets a free meal. Regardless of their individual financial situation. And so that’s obviously a very powerful tool to combat this problem. But of course, not every district in the country is going to meet that test.

VALLAS: Now something that folks have been doing in states and communities across the country, as you report, is actually trying to fundraise money to pay off, really to buy off students’ meal debts. It’s almost it evokes thoughts of efforts on kickstarter and other platforms to, or actually I think probably in maybe the largest and most widely and nationally visible example of this, Stephen Colbert recently purchased a whole bunch of payday loan debt and he made a whole big issue of it on his show. And he was showing how he could buy it for pennies on the dollar. Something similar is happening in communities across the country of people actually fundraising to payoff meal debt. But obviously, it’s maybe laudable as some of the folks quoted in your stories note, but not really getting to the root of the issue. Are you hearing from advocates that what we really should be doing is making that community eligibility policy universal so that it isn’t just schools and districts in high poverty areas?

SIEGEL: Right. I mean, these fundraising efforts are really great and heartwarming and you know, I just learned in one of the very last minute when I was writing this story about kids raising money for kids in their school with meal debt. You know, you can say nothing bad about these efforts, it’s just terrific but as you say, it’s just a stopgap measure. It doesn’t get at the root of the problem. I think there are different ways that this can be addressed in a more global sense. So again, the CEP only applies to high poverty areas. However you want to define that. And I should mention that there were efforts in the last Congress by House Republicans to actually limit the CEP. In other words, make that test more stringent, so that fewer schools or districts could take advantage of it. So it’s actually potentially under threat, I mean, we’ll see what happens in the next congressional term. But you know, some states, I mentioned Minnesota, what they’ll do is they will actually appropriate funds to eliminate that reduced price category. So in other words, kids who qualify for free or reduced price lunch, all of them will get a free meal. And that’s funded by the state. So that’s another way you can address the problem. And again, I think what you were getting at is, of course if we just had universal free school meals the way they do in some countries like Sweden, like Brazil, then no one would have this problem. And there is no stigma anymore associated with school lunch and everyone is eating the same meal. And there are obviously tremendous benefits to such a program. The question is whether this country would ever have the political will to, you know, to want to undertake that.

VALLAS: Bettina Elias Siegel is a writer who focuses on children and food policy. Her article, “Shaming Children So Parents Will Pay The School Lunch Bill” was in the New York Times this past week and you can find it there. Bettina, thanks so much for joining Off-Kilter.

SIEGEL: Thank you for having me.

VALLAS: And that does it for this week’s episode of Off-Kilter, powered by the Center for American Progress Action Fund. I’m your host, Rebecca Vallas. The show is produced each week by Eliza Schultz. Find us on Facebook and Twitter @OffKilterShow. And you can find us on the airwaves on the Progressive Voices Network and the We Act Radio network, or anytime as a podcast on iTunes. See you next week.