Like nearly 20 percent of American college students, Landre is disabled. And because Landre has spinal muscular atrophy type 2 and uses a wheelchair, her success is possible in part due to Medicaid-funded personal care assistance. The hours of personal care she receives at home allow Landre to live and study independently, while attendants help her complete crucial daily tasks related to hygiene, eating, and safety. But just a few weeks ago, her insurance company’s decision to cut her care hours from 112 hours per week to 70 nearly brought her college career to an end.

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Her insurer’s decision to reduce her access to in-home aide care is just one symptom of an underlying problem related to recent slashes to Medicaid funding. “New Jersey, like a lot of states, has tried to cut costs in their Medicaid program by contracting insurance companies called managed care organizations [MCOs], to manage it. It’s a weird way of privatizing Medicaid,” Landre explained. Some states contract with MCOs, made up of groups of health care providers, clinics, and organizations, to provide Medicaid services for a set amount per member each month.

This setup means MCOs are free in some cases to make cost-cutting decisions for profit, rather than basing decisions on actual assessments of medical needs and quality of life. Cuts affect marginalized populations like seniors and disabled people who need long-term care disproportionately, and often result in outdated policies that harm disabled people most. Almost 3 million seniors and disabled individuals rely on Medicaid for in-home personal care services that allow them to avoid institutionalization in a nursing home or other facility. “The incentives here are for them to keep cutting people’s care down, and there are very few consequences for that,” said Landre.

In the wake of a flurry of media attention, the New Jersey Department of Human Services reversed its decision, reaching a new agreement with Landre to reinstate her former care plan. But Landre and other disabled college students say it shouldn’t take public pressure on the part of individual advocates to address a much bigger underlying problem. “While this agreement will fix my situation, it does nothing to help thousands of other disabled New Jerseyans who continue to suffer due to discriminatory Medicaid policies and the predatory behavior of their insurance companies,” she wrote on Twitter.

Other students in Landre’s position have had to mount similar nationwide campaigns. From launching crowdfunding efforts and navigating complex bureaucratic systems for months at a time to spending hours publicizing their messages on social media, in press conferences, and on media outlets, disabled students often bear the burden of serving as both tireless advocates and public relations specialists just to attend college.

17-year-old Darcy Trinco, for example, who also has spinal muscular atrophy type 2, has faced many of the same obstacles in her path to a pre-med curriculum at Johns Hopkins University in the fall. Her current allotment of 30 hours of personal care services per week won’t be enough when she’s living independently. She and her family have been wading through a sea of red tape and uncertainty since she was first admitted.

Today’s stories of the roadblocks that often await disabled college students as they try to access educational opportunities are eerily similar to those faced by activist Nick Dupree (who sadly died in 2017) back in 2003. A quadriplegic and writing student at Spring Hill College, Dupree used in-home nursing care services through Medicaid while attending school in order to live independently. Threatened with losing those services upon turning 21, Dupree launched a campaign called “Nick’s Crusade” to fight for his right to remain in college and to avoid having to enter a nursing home facility after his 21st birthday.

Recently trending hashtags like #WhyDisabledPeopleDropOut are a sobering reminder that the obstacles facing disabled college students are systemic rather than isolated — and that not much has changed in the 16 years since Nick’s Crusade. “It’s so hard for disabled people to fight [this kind of segregation] in most cases,” Landre said, noting that, with family support and knowledge of the law, she’s actually “one of the lucky ones.” Many disabled students don’t have access to the same legal knowledge, family supports, and widespread publicity as the ones who most often make the news. Many disabled students don’t know that they even have the right to “fight the system,” much less the resources to do so.

Many disabled college students who drop out — which happens at around twice the rate of nondisabled students — cite trouble accessing accommodations and adequate personal care hours as significant factors in their decision to leave school. That’s why changes to state Medicaid policies through means like New Jersey’s proposed bill A4130, which would increase reimbursable personal care hours for working adults with disabilities, and broader civil rights legislation like the proposed Disability Integration Act could be so instrumental, Landre says, in leveling the playing ground for all students.

Landre knew the problem was deeper than her individual access to education, even after state officials reached out to her to sign a new agreement that would allow her to return to school. She isn’t about to stop fighting for her right, and the right of other disabled college students, to integrated education.

“So many other people just get a letter in the mail with an agency decision and don’t even know they can appeal. They have to go, ‘Well, now I have to get divorced, or move back in with my parents, or quit my job.’” She concluded, “It’s long past time for things to change” — both in terms of Medicaid’s outdated policies and in terms of ideologies that keep disabled people isolated, institutionalized, and excluded.

The undisputed good news is that Americans chipped away at the old guard last night. After two years of constant stress about losing our health care, massive tax handouts to the wealthy, and open animosity towards anyone perceived as different, we finally gained some ground.

To celebrate, we’re taking a break from our usual doom and gloom and rounding up the results that we were excited to wake up to this morning.

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We finally have some good news about health care.

Congressional Democrats are in a better position to defend the Affordable Care Act, and are likely to work on stabilizing the ACA and addressing high drug prices in the new congress.

On a state level, voters were clearly motivated by concerns about health care. They also approved Medicaid expansion in three states: Idaho, Nebraska, and Utah. This extends Medicaid coverage to 340,000 low-income people.

The victories for Medicaid don’t stop there. In Maine, where the governor and voters have been engaged in a protracted battle over Medicaid expansion, Governor-elect Janet Mills says she’ll implement Medicaid expansion “immediately” upon taking office. Tony Evers in Wisconsin and Laura Kelly in Kansas could also drive expansion in their states, where leadership has historically resisted it. Sadly, all isn’t rosy: Montana voters rejected a ballot measure that would have extended Medicaid funding via a tobacco tax, ending coverage for nearly 100,000 residents.

A number of pro-choice candidates performed well last night. But two states, West Virginia and Alabama, amended their constitutions to specifically rule out the right to abortion. It’s a symbolic amendment for as long as Roe v. Wade stands, but the new balance on the Supreme Court could place it in jeopardy.

Florida is giving the vote to 1.4 million residents.

Florida’s Amendment 4 restored voting rights to people with felony records. Until last night, it had been one of only three states (now two) that denied people convicted of felonies the right to vote after they served their sentences. That disenfranchised more than 9 percent of the state’s population overall, and 21 percent of African Americans.

It’s difficult to estimate how big of an impact this could have moving forward, but it’s certainly possible that this influx of new voters will sway future elections. And, most importantly, it will allow more than a million people to vote on the policies that affect their lives.

One other bright spot last night was in Colorado: The state passed an amendment barring the use of slavery as punishment for a crime. Other ballot measures were, to put it nicely, kind of a bummer. Six states passed a version of Marsy’s law, which establishes a victims’ bill of rights that has the potential to violate the rights of people accused of crimes and makes it harder for people who are incarcerated to access parole boards and early release. In addition, North Dakota and Ohio both rejected measures that would lessen sentences for drug crimes.

Conservative states are raising their minimum wage.

Voters in Missouri and Arkansas approved increases in the minimum wage, which will together provide a raise to nearly 1 million workers. Missouri’s ballot initiative, which won with more than 62 percent of the vote, will hike its wage to $12 per hour by 2023. Arkansas’, approved by nearly 70 percent of voters, will increase the minimum wage to $11 per hour by 2021. Missouri’s initiative also reverses a minimum wage decrease that the state legislature imposed on St. Louis, which had raised its own minimum wage to $10 in 2017.

This continues a trend of minimum wage action on the state and local level. Though the federal minimum wage of $7.25 per hour has not been increased since 2007, four states approved wage hikes in 2014, and four more did the same in 2016, while cities including Baltimore, Seattle, and Washington, D.C. have increased their own minimums.

Still, 21 states adhere to the federal minimum wage, the purchasing power of which peaked in the 1960s. We would certainly like to see more movement here, since wages have been stagnant across the country for the last several decades – particularly for low-income workers and black and Hispanic families.

Massachusetts will uphold rights for transgender Americans.

In 2016, Massachusetts passed a bill to prohibit discrimination based on gender identity in public places, but the law’s opponents managed to get it placed on the ballot this year. Voters upheld the law, which provides protections that don’t exist on a national level, by nearly 70 percent. In most states, it is still legal to discriminate against someone in housing, business, employment, and public accommodations because of their sexual orientation or gender identity.

Because we’re celebrating, we’ll gloss over how irritated the entire TalkPoverty staff is that it’s possible to put these rights on the ballot. Instead, we’ll look at this as a blow to the specious arguments that opponents to trans rights have been making against trans Americans.

San Francisco is taxing corporations to help people experiencing homelessness.

It was generally a bad night for tax policy on the state and local level, due to several states, including North Carolina, Florida, and Arizona, approving anti-tax ballot measures, and the defeat of an effort to raise corporate taxes and implement a progressive income tax in Colorado in order to spend more money on public schools.

However, San Francisco approved an increase in its corporate tax — which will be levied on about 300 of its biggest businesses — in order to raise money to combat the city’s homelessness epidemic. At least 50 percent of the funding will be dedicated to direct housing in a city where some 7,500 people are experiencing homelessness.

The successful campaign in San Francisco was mirrored in two other Bay Area cities and counters a similar effort in Seattle, where the city council passed and then repealed a “head tax” due to opposition from Amazon and other big corporations.

“I missed out on so much,” she mourns. “Just being tired, not able to enjoy life.”

Gray acquired hepatitis C in 1991, and spent more than twenty years living with the virus’s effects. Though she didn’t begin to experience symptoms of major liver damage until 2015, she says she spent most of her life feeling fatigued, sometimes to the point of being bedridden, and nauseated.

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Interferon treatment, the first available treatment for chronic hepatitis C, was introduced in 1996, but the cure rate was low; around 30 percent for genotype 1, the most common form of the virus in North America. It was also difficult to administer, requiring self-injection into the stomach, and came with a host of side-effects, ranging from nausea and muscle aches to long-term autoimmune dysfunction. The full treatment course lasted six months to a year. Gray tried interferon treatment for a month, but discontinued it when she learned she was pregnant.

“I’m glad I did,” says Gray. “I’ve heard horror stories about people who took it for the year.”

Gray is not the only hepatitis C patient who chose decades living with the virus over attempting interferon. David Cowley of Wales lived with hepatitis C for 35 years, refusing interferon because of its side effects and low success rate. But Gray and Cowley share something else in common: neither has hepatitis C anymore.

One day in 2015, Gray’s boss noticed that she looked, she recalls, “as yellow as the walls.” Because jaundice (yellowing of the skin and eyes) in patients with hepatitis C is a sign of serious illness, she immediately went to her doctor and learned that she had liver cirrhosis. She applied for disability benefits, and while waiting for a determination, began undergoing the testing procedures that would allow her to take a new kind of medicine, one with a much higher success rate and far fewer side effects.

Sofosbuvir is a direct acting antiviral (DAA) medication sold by American biopharmaceutical powerhouse Gilead Sciences under the brand names Harvoni, Sovaldi, and Epclusa (Harvoni and Epclusa also contain other drugs, making them single-pill regimens, while Sovaldi requires a second drug to be prescribed with it). These drugs have a 90 percent or higher cure rate across a variety of genotypes (for genotype 1, the cure rate closes on 100 percent), and Harvoni in particular boasts only mild, short-term side effects like fatigue. All three medications are consumed orally and take 12 weeks to complete. In comparison to the old treatments, these DAAs function like a miracle. Gilead initially set the price for full treatment between $74,000 and $94,000 for patients in the United States.

Medicaid covers the treatment — but there’s a catch. There are 3.5 million people in the United States living with hepatitis C, and state Medicaid programs find it difficult to afford to treat patients at the prices Gilead set. (Rough math says curing all current cases would cost Medicaid half of its annual budget). Most state Medicaid programs initially dealt with the shortfall by limiting treatment to people who meet their criteria. In 25 states that criteria includes abstinence from illegal substances, even though most new hepatitis C infections in the United States are the result of injection drug use.

In 32 states, patients must also have liver damage. Newly-infected patients, or those whose disease hasn’t progressed far enough, must wait until they suffer potentially irreversible liver damage before they receive coverage for their treatment. In addition to more time living with the symptoms, this also increases the risk of complications like liver cancer and decreases the effectiveness of treatment. In one study of economically disadvantaged patients, only 82 percent of patients with decompensated cirrhosis (a severe form of liver damage) achieved viral elimination.

Medication access is not only an issue for chronic hepatitis patients in the United States. Other countries have been battling high drug costs as well, including Australia and the United Kingdom. David Cowley was fortunate — and tenacious — enough to get into a 2013 drug trial for Harvoni in the UK. When he learned about the trial, which required a weekly trip to an office that was 200 miles from his home, he called and “pestered them for weeks” until he got in. Within months of beginning treatment, he was cleared of the virus that had been slowly killing him for 35 years. Then the drug that saved his life hit the market, and he learned the price tag.

“I was disgusted by the prices,” he says. So he decided to travel to Bangladesh to get hold of generic versions of the medication for distribution to other patients in need. Cowley was not the only person with that idea.

James Freeman, a doctor who runs a telehealth program in Australia, and Greg Jeffreys, a historian and author also based out of Australia, run what each hesitantly call “buyers’ clubs” for hepatitis C medications. Cowley, Freeman, and Jeffreys all know each other, though they operate separately. The clubs function under the same essential premise: That hepatitis C medication should be available at free or low cost to everyone who needs it. They help patients acquire the generic drugs, offering full 12-course treatments for around $500-$1000, and sometimes less based on need and availability.

“It’s pretty simple,” says Jeffreys of his service. “Someone contacts me, I ask for some kind of medical report to show they actually have hep C, I explain what it costs, they send me a copy of their report, their shipping address, their contact phone number, a payment method — whatever that might be — and two weeks later they have their medicine.”

These buyers’ clubs operate by taking advantage of personal importation laws, which vary by country. For the U.S. that means buyers must import less than a three-month supply, and they cannot sell or distribute the medication. An added provision that a medication must be unavailable domestically leaves the legality of these practices in somewhat of a gray area .

Rochelle C. Dreyfuss, co-director of the Engelberg Center on Innovation Law & Policy at New York University, says that under patent law, buying and importing a cheaper version of the same product from another country is legal, but the addition of U.S. Food and Drug Administration (FDA) regulations make pharmaceuticals especially tricky. “I think [this] confusion is everyone’s confusion,” she notes, adding that if the FDA were to crack down, “one side will say it’s available domestically, you just have to pay more money, and the other that these patients can’t afford to buy it here.”

Although the FDA is not currently intervening in these buyers clubs, some doctors are wary and advise against importing generic drugs. After all, how can a buyer know what’s truly in them; whether they are effective or potentially dangerous?

This is a sentiment Lisa Gray understands. Jaundiced and living with disabling liver cirrhosis, Gray was eagerly awaiting her medication approval — now that she was finally sick enough to meet the criteria. But when she began receiving $1,500 monthly in disability checks after her liver damage left her unable to work, she lost the Medicaid coverage that would have paid for her treatment. (Louisiana expanded Medicaid the following year, but 17 states still have not done so). Uninsured, and unable to pay the premium and co-pay for private insurance, she began looking into alternative options.

“At first I was very skeptical,” she says of the buyers clubs. “It even went through my mind that they’ve got all these people paid to praise generics…but I found Greg Jeffreys, I talked to him, and I realized it’s not a scam.”

Gray says Jeffreys worked with her financial situation by getting his medication connection, which is based out of India, to send her a recently expired 8-week course of sofosbusvir free of cost. That left her responsible only for the other drug she needed to take with it, daclatasvir. She paid $350 for it, by credit card. When she was unable to come up with the funds for her remaining treatment, Jeffreys sent it to her free of charge.

“It was scary because you don’t know if it’s a real medication or not, but I thought what do I have to lose? I was throwing up everyday, it was horrible,” recalls Gray. “I started taking that medicine; my eyes were yellow, they got white. It was amazing.”

Gray also remembers her doctor insisting that she wait until she could find funding for the prescribed treatment course, rather than using a personal import scheme to buy generics. “My doctor literally screamed at me. [She said] ‘they’re not regulated, they could be fake.’”

But Jeffreys, Freeman, and Cowley, who now all use a shared seller out of India, insist that fear is unnecessary — at least when it comes to their medicines. Freeman reports that he has seen a 94 percent cure rate with his own patients. With the benefit of his medical background and connections with the Tasmanian government, Freeman says he’s had his drugs tested from the start, when he was importing raw materials from China, and that they are virtually identical to those found in Harvoni and other brand name medicines. Jeffreys added that the Indian connection the three use now gets the drugs directly from Mylan, who partners with Gilead Sciences to manufacture these drugs in India.

“These products are licensed by Gilead and approved by the FDA,” Jeffreys asserts. “To say they’re dangerous is crazy.”

This doesn’t mean that all buyers’ clubs are created equally. As with any unregulated enterprise, copycats have popped up on Facebook claiming to have special contracts for drugs with other countries. Although there’s no way to know for sure whether these are illegitimate, they — unlike Jeffreys, Cowley, and Freeman — did not immediately respond to inquiries for comment.

States have been slowly lifting regulations surrounding Medicaid access to direct acting antivirals for hepatitis C. As of 2017, 18 states have lifted the liver fibrosis restrictions and 22 others are granting coverage to patients with less severe liver damage; four of these require only mild fibrosis. In addition, the Department of Health and Human Services has questioned Gilead and other companies about their pricing in the hopes of being able to grant coverage for more patients. The hope is that as more drugs become available and drug costs lower, more states will lift or lessen eligibility restrictions so that patients in the United States can access these medicines through their providers.

Still, Jeffreys says he has seen no decline in Medicaid patients from the United States who need meds. “I get heaps of them,” he says about clients on Medicaid. “It’s been exactly the same for the past three years. I get probably 100 e-mails from the United States every week.”

For low-income patients like Gray, who lose or are denied coverage, these buyers clubs have become a lifeline, linking them to treatments that change their lives within months.

“It’s just an amazing feeling to know that this virus is not alive in me anymore,” says Gray, who had no detectable viral load twelve weeks after treatment. “I just get mad that my own country could not help me.”

My family does not have a lot. I am raising three kids on less than $45,000 per year, and it’s not easy. But because of Medicaid, we’ve at least had our health care.

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Now, the state is threatening to take that away. Any day now, Governor Snyder is expected to sign a bill that would add work requirements to Healthy Michigan, Michigan’s Medicaid expansion program, which helps nearly 700,000 Michiganders. Under the legislation, people who can’t find a job or get enough hours at work would be locked out of receiving health care through Healthy Michigan for a full year.  About 350,000 people, including students, parents, and caretakers, would be affected. And while the bill’s sponsors claim the requirements would exempt people with disabilities, many would be caught in the cross hairs.

I am one of those people. I am unable to work because of my health condition, but because I don’t receive federal disability benefits, I could still lose my health insurance if this bill becomes law. As a result, Michigan’s one-size-fits-all policy will jeopardize the life my family has built.

The lawmakers behind this bill assume that the vast majority of recipients are not working, when reality shows the opposite: 6 in 10 working-age adults who receive Medicaid in Michigan are working, and 3 out of 4 are part of a family with at least one working member.

My ex-husband worked through our entire marriage, and ever since chronic pain drove me from the work force, I’ve been a stay-at-home mom. In the past two decades,  I’ve raised three kids and I’m so thankful for that experience. But this bill would punish every person who makes that choice—and every person who had that choice made for them, like me.

Living from paycheck to paycheck is not easy. But my family has made do with what we have because we know that at the very least, we could see a doctor if we were sick.  Taking away Medicaid not only jeopardizes that sense of security for me and hundreds of thousands of Michiganders—it could end up costing people their lives.

The order, titled “Reducing Poverty in America by Promoting Opportunity and Economic Mobility,” carries little weight by itself. It directs a broad range of federal agencies to review programs serving low-income people and make recommendations on how they can make the programs harder to access, all under the guise of “welfare reform.”

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The order’s main purpose appears to be smearing popular programs in an effort to make them easier to slash—in part by redefining “welfare” to encompass nearly every program that helps families get by. To that end, the order reads as follows:

The terms “welfare” and “public assistance” include any program that provides means-tested assistance, or other assistance that provides benefits to people, households, or families that have low incomes (i.e., those making less than twice the Federal poverty level), the unemployed, or those out of the labor force.

Redefining everything from the Supplemental Nutrition Assistance Program (SNAP, formerly known as food stamps) to Medicaid to Unemployment Insurance to child care assistance as “welfare” has long been part of conservatives’ playbook, as my colleague Shawn Fremstad has pointed out. The term has a deeply racially charged history in the United States, evoking decades of racial stereotypes about poverty and the people who experience it. By using dog-whistle terms like welfare, Trump is erecting a smokescreen in the shape of President Reagan’s myth of the “welfare queen”—so we don’t notice that he’s coming after the entire working and middle class.

The fact is, we don’t have welfare in America anymore. What’s left of America’s tattered safety net is meager at best, and—contrary to the claim in Trump’s executive order that it leads to “government dependence”—it’s light-years away from enough to live on.

Take the Supplemental Nutrition Assistance Program. SNAP provides an average of just $1.40 per person per meal. Most families run out of SNAP by the third week of the month because it’s so far from enough to feed a family on.

Then there’s housing assistance, which reaches just 1 in 5 eligible low-income families. Those left without help can spend up to 80 percent of their income on rent and utilities each month, while they remain on decades-long waitlists for assistance.

And then there’s Temporary Assistance for Needy Families (TANF), the program that replaced Aid to Families with Dependent Children in 1996 when Congress famously “[ended] welfare as we know it.” Fewer than 1 in 4 poor families with kids get help from TANF today—down from 80 percent in 1996. In fact, in several states, kids are more likely to be placed in foster care than receive help from TANF.

Families who do receive TANF are lucky if the benefits even bring them halfway to the austere federal poverty line. For example, a Tennessee family of 3 can only receive a maximum of $185 per month, or a little over $6 a day.

Yet TANF is the program Trump is holding up as a model—hailing 1996 “welfare reform” as a wild success—despite the fact that TANF has proven an abject failure both in terms of protecting struggling families from hardship and in helping them get ahead.

In particular, this executive order directs agencies to ramp up so-called “work requirements”—harsh time limits on assistance for certain unemployed and underemployed workers—which were at the heart of the law that created TANF. But decades of research since TANF was enacted show that work requirements do not help anyone work.

Make no mistake: Pushing for “work requirements” is at the core of the conservative strategy to reinforce myths about poverty in America. That “the poor” are some stagnant group of people who “just don’t want to work.” That anyone who wants a well-paying job can snap her fingers to make one appear. And that having a job is all it takes to not be poor.

But in reality, millions of Americans are working two, even three jobs to make ends meet and provide for their families. Half of Americans are living paycheck to paycheck and don’t have even $400 in the bank. And nearly all of us—70 percent—will turn to some form of means-tested assistance, like Medicaid or SNAP, at some point in our lives.

Trump claims his executive order is intended to eliminate “poverty traps.” But if he knew anything about poverty—aside from what he’s learned on Fox News—he’d know the real poverty trap is the minimum wage, which has stayed stuck at $7.25 an hour for nearly a decade. That’s well below the poverty line for a family of two—and not nearly enough to live on. There isn’t a single state in the country in which a minimum-wage worker can afford a one-bedroom apartment at market rate. Many low-wage workers are forced to turn to programs like Medicaid and SNAP to make ends meet, because wages aren’t enough.

If Trump were really trying to promote “self-sufficiency”—a concept he clearly doesn’t think applies to the millionaires and billionaires to whom he just gave massive tax cuts—he’d be all over raising the minimum wage. In fact, raising the minimum wage just to $12 would save $53 billion in SNAP alone over a decade, as more low-wage workers would suddenly earn enough to feed their families without nutrition assistance.

Yet there’s no mention of the minimum wage anywhere in Trump’s order to “promote opportunity and economic mobility.”

Which brings us back to the real purpose of this executive order: divide and conquer.

Trump and his colleagues in Congress learned the hard way last year how popular Medicaid is when they tried to cut it as part of their quest to repeal the Affordable Care Act. And it’s not just Medicaid that Americans don’t want to see cut. Americans overwhelmingly oppose cuts to SNAP, housing assistance, Social Security disability benefits, home heating assistance, and a whole slew of programs that help families get by—particularly if these cuts are to pay for tax cuts for the wealthy and corporations. What’s more, as polling by the Center for American Progress shows, Americans are less likely to vote for a candidate who backs cuts.

By contrast, vast majorities of Americans across party lines want to see their policymakers raise the minimum wage; ensure affordable, high-quality child care; and even enact a job guarantee to ensure everyone who is able and wants to work can find a job with decent wages. These sentiments extend far beyond the Democratic base to include majorities of Independents, Republicans, and even Trump’s own voters.

That’s why rebranding these programs as welfare is so important to Trump’s agenda. Rather than heed the wishes of the American people, Trump’s plan is—yet again—to tap into racial animus and ugly myths about aid programs in order to pit struggling workers against one other. That way, he can hide his continued betrayal of the “forgotten men and women” for whom he famously pledged to fight.

I am that vessel, broken and restored.

I was born addicted and given up for adoption.

Dismissed from social groups and bullied in high school.

Sexual trauma as my first sexual experience.

Subsequent suicide attempt.

My sense of self began to leak, falling away from me, slipping through the cracks.

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I survived Hurricane Katrina.

And the looting.

My husband was deployed to war.

My child almost died at birth—and so did I.

Another deployment.

My marriage is crumbling.

I’m a single mother.

I can’t take it anymore.

Heroin.

On December 7, 2011, after 7 years of addiction, I was arrested and taken to Campbell County jail. I stayed there for 9 months and was released to shock probation Shock probation is when a judge orders a person serve a short stint in jail, then releases them to serve the remainder of their sentence on probation. The theory behind the practice is that the short prison sentence will reduce recidivism for first-time offenders. in a halfway house.

I tried so hard to adjust, but I couldn’t do it. I didn’t have health insurance, so my ADHD and anxiety disorders were not being treated. I was getting recovery material from participating in substance abuse treatment, but I couldn’t concentrate or remember things. Three weeks later, I returned to jail because I wasn’t doing the laundry chore the right way—I kept forgetting to empty the lint trap in the dryer and use the sign-in/sign-out book.

Once I was back in prison, I had health care and didn’t need insurance. I was able to complete a six-month program for women who have dual diagnosis—mental illness and substance abuse. I graduated and was released in May 2013, a completely new human being with an education on the most important subject I could ever learn about: myself. I had a 30-day prescription and a suggestion to follow up with my primary care physician and go to a meeting.

All I needed, yet again, was health insurance.

I couldn’t work for several months after being released. My only experience was serving in bars and restaurants, but I was terrified that the job would make me relapse. I have severe back pain, and I’m allergic to the only medicine that’s legal for me to use to relieve it. Even when I was mentally and emotionally capable of going back to work, I struggled to find employment as a convicted felon on parole. I had no license, no transportation, no birth certificate. I had no money.

I lived at home with my parents and felt like a tremendous burden as they shuttled me to and from probation and parole, to free clinics, to prescription pharmacy program buildings, and to my meetings. They watched me struggle in disbelief at first, thinking I could try harder. But soon they realized how hard it was to get a job interview, let alone a job.

That’s how, almost 10 months after my release, I found myself sitting in my empty bathtub. I was fully dressed and weeping, screaming silently at a god I didn’t believe in anymore to “fix it,” or I was going to end it all.

That’s when I heard the mailman. He rang the bell and brought me a package for my father, and on top was my approval notice from Medicaid. In that moment, I literally felt like President Obama had done that just for me—to keep me here, so I’d keep fighting for myself.

Just as the vessel is held together by the hands of the artisan, I was held together by Medicaid.

My doctors and I worked together fill the cracks in my life with things far more valuable and precious than gold.

Love for myself, my family, and the rest of humanity.

Coping skills for the times when I am not well.

Dedication to a beautiful, intelligent 11-year-old son.

Now, I’m pursuing a bachelor’s degree at Northern Kentucky University, with two years of experience working on the front lines of the opioid epidemic as a Kentucky State Certified Peer Support Specialist. I have helped people navigate their own road to recovery by partnering with them to identify and knock down the very same barriers I faced.

But last night, President Trump issued an executive order that could make stories like mine a lot less common. It asks any federal agency that provides assistance to low-income people to re-examine their programs and add work requirements whenever possible. It builds on a letter that the Centers for Medicare and Medicaid Services issued to state Medicaid directors earlier this year, allowing states to strip coverage from people who can’t find a job.

People like me.

People who aren’t working because they can’t: because they’re sick or they have a record or they have a disability or they can’t find a job or they’re taking care of their aging parents.

People who need help.

I’ve been on both sides of the opioid epidemic, and I can tell you with absolute certainty that people will die if these restrictions are implemented. I had to fight way too hard and for far too long to get where I am today.

The state’s Republican leaders appear to have no qualms about taking health insurance away from Tennesseans who can’t find work or get enough hours at their job—even though taking away someone’s health insurance isn’t going to help them find work any faster, and can actually make it harder to find and keep a job. Instead, debate around the legislation has reportedly centered on how to pay for the new policy. Lawmakers’ own estimates put the price tag for enforcing the new work rules at $10,000 per person disenrolled from Medicaid—which advocates note could be more than the new policy saves.

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This is where Tennessee’s proposal gets really evil. Unwilling to foot the bill for their new policy out of the state’s general budget, Republican lawmakers have decided to pay for it with funds from the state’s Temporary Assistance for Needy Families (TANF) program—which provides meager cash assistance to very poor families with children.

While news reports, such as the Nashville Public Radio story noted above, make it sound as though Tennessee’s TANF program is flush with unused cash due to a “booming economy and historically low unemployment,” the real story is much more dire.

Nearly one-quarter of Tennessee children live below the federal poverty line, making it one of the worst states in the nation when it comes to child poverty. But fewer than 1 in 4 poor Tennessee families with children get help from the state’s TANF program, which is one of the stingiest in the country. A Tennessee family of three lucky enough to get temporary assistance can expect to receive a maximum of $185 per month—or a little over $6 a day.

Why is Tennessee failing so horrifically to help so many of its poorest children? In part, this failure is the legacy of 1996 “welfare reform,” which converted the nation’s main source of assistance for poor families—then called Aid to Families with Dependent Children—into TANF, a flat-funded block grant with very little accountability for how the money is spent.

Many states use TANF as a slush fund to close budget gaps, with just 1 in every 4 TANF dollars going to cash assistance for struggling families with kids. But Tennessee has made an Olympic sport out of diverting TANF funds away from poor families in need of help, squirreling away more than $400 million in unspent funds in recent years rather than using the money to help struggling families with kids avoid hunger and homelessness.

Now the state’s lawmakers want to use those unspent funds to bankroll the disenrollment of thousands of struggling Tennesseans from Medicaid.

The bill is expected to clear Tennessee’s conservative Senate in the coming days and has the support of Gov. Bill Haslam (R), who is expected to sign it into law. If passed, both the state’s proposed work rules and their proposed pay-for will require the approval of federal health officials. If the state’s scheme gets a thumbs up from the Trump administration, other states will likely follow suit. Kentucky, Indiana, and Arkansas have all received permission from the Trump administration to enact work requirements for Medicaid, following Trump’s widely criticized invitation to states earlier this year, and more than a dozen states are actively seeking similar approval. Many—if not all—of these states are looking for ways to pay for the costly bureaucracy required to implement this type of policy.

One would be hard-pressed to cook up a more twisted irony than taking money intended to help poor families with children avoid hunger and hardship and using it instead to take health insurance away from, in some cases, the very same struggling workers and families. But there’s a deeper rot at the core of Tennessee’s plan that cuts across conservative proposals to slash not just health care but food assistance, housing, and more—both in Congress and in the states. And that’s an ideology-fueled willingness to spend whatever it takes to take aid away from struggling workers and families—even when bureaucratic disentitlement costs more than it saves.

As Emily Badger and Margot Sanger-Katz write in The New York Times’ Upshot, “Across centuries of use, [the term] has consistently implied another negative: The able-bodied could work, but are not working (or working hard enough). And, as such, they don’t deserve our aid.”

I spoke with Badger to unpack the 400-year history of the term able-bodied.

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Rebecca Vallas: Emily, I have to admit I nerded out hard reading this piece—a 400-year history of the term that is centrally housed in every debate around the deserving versus the undeserving poor, something we’re very much living through in this political moment—just how very cool that you did this. Help tell that story, where does it go back to 400 years ago?

Emily Badger: The genesis for this piece is that my colleague Margot and I realized that we had this mutual suspicion of the term “able-bodied.” People constantly use it in conversation with us in Washington and in policy circles and the think tank world. But we both felt like we shouldn’t use this term ourselves as journalists, at least not without quotation marks around it, because it’s loaded, it carries a lot of connotations that people don’t explicitly express. And in Washington, it’s quite common that we fight about politics through rhetoric.

So Margot and I asked, what is the story behind the term? Where did it come from? How have we come to use it? What do people really mean when they use it?

We started reaching out to historians, and other people who are familiar with the backstory of the Medicaid program. Over and over again people told us that we need to learn about English poor law dating to 1601. It turns out that this set of laws—which are really the foundation of social policy in the United States—included the phrase “able-bodied.” They include from the very beginning this distinction between the impotent poor, meaning people who are powerless to help themselves, and the able-bodied poor. And the idea that we should provide resources and aid to the impotent poor but we shouldn’t freely give stuff away to the “able-bodied”—maybe what we should do is set them up at workhouses, try to connect them to work opportunities. But very early on there was this distinction between people who we thought should be working, and people who couldn’t work for a reason.

RV: The first distinction between the deserving and the undeserving.

EB: Exactly, and the idea that some people are worthy and some people are not gets expressed now in a lot of different ways. We talk about people who are lazy versus people who are industrious, or people who are able-bodied versus people who are crippled or disabled. Whatever language we use, there’s always this idea that one group unquestionably should be given help without judgment and the other group is probably trying to freeload off of the public. As one historian pointed out to me, that’s part of the reason we have these really expensive government bureaucracies in the United States around anti-poverty programs—we construct these elaborate bureaucracies to try to separate these two groups of people.

When we require people to qualify or submit new paperwork multiple times a year, or when we’re talking about work requirements, or when we require people to show that they’re in a job training program or that they’re actively looking for work even if they don’t have work available … all of that is part of this expensive process of trying to identify who is deserving and who is not.

RV: And one of the points that your piece makes is that “able-bodied” isn’t just an inherently political term—it’s also a heavily moral term, and that’s a large part of why politicians and elected officials are using it.

EB: Yeah, one of the historians put it really perfectly—he said that the physical distinction always implies a moral distinction. And even though this dates back to Elizabethan England, this idea is very American, too: that work is moral, if you are a good person you are working hard. If you are not working hard, that’s a result of some kind of moral failing on your part. That’s a very old puritanical idea but obviously it’s one that carries through to debates that we’re having in 2018 about programs like Medicaid.

RV: Today we’re familiar with the vast and expensive government bureaucracies you were describing that create hurdles for getting assistance—how did it work back in the 17th century?

EB: So the 1601 poor law in England codified what a lot of communities were already doing. It basically said we’re going to collect taxes from people and then redistribute them to support and help the poor. It placed the onus on people in individual communities, like parish wardens and overseers of the poor, to be responsible for collecting and redistributing that money. So there were people living in the community who knew, for instance, that David over here has tuberculosis and he can’t support his family and he’s got 8 children and they’re all dependent on him and obviously the mother can’t work because she’s also trying to take care of the children. It’s quite clear to the parish warden that David and his family are worthy.

Translating this idea over the years, we’ve erected these larger and more centralized government programs. Someone who is sitting in a Medicaid office in Kentucky doesn’t personally know you and your story to be able to say if they think you are clearly worthy or not. So these same distinctions are made through these other very complex processes: Can you show us a doctor’s note that explains why you aren’t capable of meeting a work requirement that we’ve imposed on you? Or some other qualification criteria. Essentially these bureaucracies are trying to do what the parish warden was trying to do 400 years ago.

RV: I was fascinated to read in your piece that apparently at some point the English came to recognize not just the able-bodied versus those who were not able-bodied, but a third group of people: the able-bodied who were blocked from work for reasons that weren’t about their bodies.

EB: Yeah, I think once you start separating the poor into two groups of people and make these distinctions, it will become clear that there are people out there who appear to be physically capable of work but they’re not working, and it doesn’t seem like they’re lazy, so there must be other things that are preventing them from working. Maybe the economy is really bad, or there aren’t enough jobs in the local community. Maybe this person isn’t very mobile and so they can’t travel to where the jobs exist.

If you deploy any thoughtfulness you recognize that there are plenty of people who don’t work for reasons that don’t have to do with their body. There are barriers to employment that are in the community, in the structure of the economy, embedded in discrimination in the labor market. And this process of setting everyone who is poor into one of these two categories becomes murkier once you realize that the world is more complicated than that.

But what was so striking to us about this history is that the language they were using to debate this, 300, 400 years ago, is identical to how we talk about the poor today. Not only are we still talking about the able-bodied and the deserving, but we’re still having arguments today about why aren’t “able-bodied” people working? Is it their own fault or is it because there are structural obstacles? And just as was the case 300 years ago, I think today we often have a hard time distinguishing between personal failings and structural obstacles. People still wind up frequently conflating structural issues with some kind of moral deficiency on the part of people, which is fundamentally unfair.

RV: One of the bureaucratic hurdles that has been set up over the years to make it harder for struggling folks to access basic assistance is drug tests. I was fascinated to learn from your reporting that modern-day drug tests actually have origins in the 18th century.

EB: Yeah, this is one of the particular moments in reporting this where everything came together for me and I realized how much we are having the same conversation today that we were having 400 years ago. One of the historians, Susannah Ottaway, told me that back in Elizabethan England, they started to set up these rules to try to distinguish who is worthy, and who is not. Things like, if anyone in the community has seen you getting drunk in the local alehouse we know that you are not worthy.

RV: Here was the rule, quote: “Nobody who tipples in the alehouse will get poor relief.” That was the 18th century drug test, right?

EB: Exactly. So if you can’t figure how to distinguish who is worthy from who is not then you set up rules that effectively force the poor to reveal themselves. This rule was about people who are drunk. Today we would set up a rule about drug-testing which is basically a hoop that we make the poor go through in order to reveal themselves as being someone who we ought give assistance to. And this is so similar to what you often hear in Washington today, when we talk about creating more onerous eligibility criteria. If you really need aid, you’re going to be willing to come in to the local bureaucratic office and fill out new paperwork every month, or you’re going to be more than happy to take this job training program as a condition of receiving aid, because if you really need it you will do anything to get it. And that’s the exact same idea that you could reveal yourself to be someone who desperately wants this by your willingness to overcome all the obstacles we’re putting between you and the aid.

And of course it ignores the fact that people may have a difficult time meeting all of those requirements for reasons that have absolutely nothing to do with their willingness or their desire. Maybe you don’t have a car and it’s not practical for you to get to this meeting every month, maybe your housing situation is really unstable and you don’t receive bureaucratic mailings that are sent to you twice a year reminding you to sign up for things.

RV: Now the Medicaid program itself is actually in many ways a historical tracker of the evolution of this kind of thinking. Medicaid began in 1965, with, as you put it, “Elizabethan notions in tact,” but over time has evolved to something that looks very different. Tell us a little bit of that story of the evolution of Medicaid.

EB: The Medicaid program originally recognized these very familiar classes of the “deserving” poor. If you are a pregnant woman, if you are blind, if you are physically disabled, these are classic categories that everyone has agreed to going back a long time, these are people who are worthy of help. And over time the Medicaid program has extended help to people beyond those core groups that would be familiar even in Elizabethan times. It’s extended to women who had certain kinds of cervical or breast cancer, it was extended to more parents, it basically became more expansive and more generous over time. And that kind of culminates in the Affordable Care Act when we’re finally saying it doesn’t matter if you’re a parent, if you have dependents, if you have some kind of physical condition that prevents you from working, whatever you are, if you make below a certain income, you qualify. We’re going to get rid of all of these other distinctions about who qualifies and who doesn’t and set an income cut-off.

That’s what the Affordable Care Act tried to do with the Medicaid expansion, which ultimately a lot of states declined to participate in. But that story, that evolution, marks a kind of progress from this history that we’ve been talking about. But what’s so notable about these new work requirements that are coming through Medicaid waivers from the Trump administration is that we’re now moving backwards. We’re rolling back that long-term story of expanding to more and more people. I think the term able-bodied has particularly come into fashion in the last five years or so because it has been used specifically to refer to the Medicaid expansion population.

But conservatives in particular who are concerned about all of the “able-bodied” are saying wait a minute let’s scale it back, let’s go back to trying to make some distinctions between who is able-bodied and who is not. But of course as we were talking about before, once you start saying that you want to make these distinctions between the deserving and the undeserving, then you realize wait, we have to carve out an exception for these people and for these people and for these people, and that exercise of carving out all these exceptions reveals the underlying folly of trying to make these distinctions in the first place.

RV: So given this history lesson, what’s your takeaway in terms of what we are seeing today?

EB: The main thing that Margot and I really wanted to get across in writing about this is that this is not a neutral term. It doesn’t have a technical definition. It’s being used in a slippery way to imply lots of unspoken things. And so just stop and take pause when you hear it. I think Margot and I are sort of secretly hoping that other journalists will realize that they should not just repeat this language when it comes out of politicians’ mouths. I would stick it in quotes if I had to use it in a story. We’re always going to fight about our politics through rhetoric in Washington. That’s not going to change. But at the very least let’s all be honest about what’s happening with this term.

This interview was conducted for Off-Kilter and aired as part of a complete episode on February 9. It was edited for length and clarity.

Last month, the administration began testing these policies at the state level. On January 11th, the Centers for Medicaid and Medicare Services (CMS) announced that states can now compel low-income people who rely on Medicaid to meet “work and community engagement requirements” in order to keep their health insurance. Within a day of making this announcement, CMS approved Kentucky’s plan to implement such requirements. The plan strips Medicaid coverage from most adults who fail to comply, including those who do not complete paperwork on time or report “changes in circumstances” quickly enough.

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All told, Gov. Matt Bevin’s office estimates that around 350,000 Kentucky residents will be subject to the new requirements and 95,000 will likely lose their Medicaid benefits. But once those people are booted from the program, Kentucky is giving them a chance to get it back: through “a financial or health literacy course.”

Of course, this is not the first time that Americans have been required to meet economic standards or pass a literacy test to exercise their rights. Discriminatorily applied literacy tests, known for their impossible difficulty, were administered by election officials who were given immense discretion over who to test, what to ask, and how to assess the answers when (mostly black) citizens attempted to vote. Similarly, extractive poll taxes disenfranchised poor black populations (and sometimes poor whites) from the end of the 19th century until the advent of the 24th Amendment (1964) and the Voting Rights Act (1965).

These methods were incredibly effective at preventing black people from voting. They led to dramatic drops in black voter registration in the South, and in the states that were the most egregious offenders—like Louisiana—black voter registration decreased by as much as 96 percent over an eight-year span.

Of course, the electoral arm of white supremacy in the postbellum era stretched well beyond such tools (and all the way to violent repression). Nevertheless, taxes and tests stand out as especially contemptible because they officially codified a logic of exclusion aimed at those presumed unworthy of American citizenship.

On the surface, Kentucky’s new Medicaid rules don’t look exactly like poll taxes or literacy tests. But there’s an equivalent logic of exclusion that holds across both domains: Those who are unworthy—either because of their race or due to their inability to access decent jobs—are ousted. Their political and social rights (like the right to vote and the right to be healthy) are sacrificed on an altar built by those with power.

Since social rights like health care are connected to political rights like voting, undermining one deteriorates the other. When Medicaid recipients are made to jump through hoops to prove that they are worthy of health care, they quickly figure out where they stand in the American social hierarchy. And once that’s clear, they have a diminished desire to participate in politics.

I know this because I spent years studying Medicaid and wrote a book about the politics surrounding it. I had in-depth conversations with people who use Medicaid; I observed  Facebook groups filled with Medicaid beneficiaries who readily recounted their experiences; I examined thousands of responses to large national surveys; and I scoured administrative records that detailed the actions that people with Medicaid took when they had scuffles with the government. I got to know some of the people who will find themselves at the losing end of the new Medicaid regulations, and I discovered how Medicaid shapes their political choices.

Take Angie, for example. Michigan’s Medicaid program stripped her coverage for not completing paperwork that she never even received. After battling for several months with local bureaucrats, she finally got her benefits restored. But by then she knew who she was in the eyes of the government:

“It’s like you are uneducated and you just want to get these free services and somehow you are inferior to other people if you receive those benefits … Once they hear Medicaid its ‘oh, one of those people.’”

Alienated from the government, Angie stopped voting and trying to advocate for herself. “I don’t do politics,” she said. When we talked about why she wouldn’t appeal devastating benefit cuts, she explained that she was a “nobody” and that the “powers that be” would not bend very far for her.

Angie was hardly alone. Ahmad fought back tears when he told me about the bureaucratic hurdles he faced after losing a limb in Iraq. Again and again he had to re-certify his enrollment, refile paperwork and find new medication when the old ones were no longer covered by Medicaid. He was clear on what this implied about his social status. “They treat us like we are stupid animals; like we don’t know anything,” he says. “I feel like I’m nothing, because when you are in Medicaid, they do whatever. You have to be on their rules.”

Just as literacy tests were applied unfairly by the election officials who administered them, adding stipulations to Medicaid will create opportunities for racial inequity. Blacks and Latinos face more labor market discrimination, have a harder time finding quality child care, and—because of biases in the justice system— are more likely to have a criminal record. In the face of such barriers, work and health literacy requirements pose burdens that will fall disproportionately on people of color.

That brings us back to where we started. Both types of literacy testing are predicated on assumptions about who deserves access to fundamental social and political rights, like health care and voting. Both also reinforce racial and economic inequality, whether purposely or inadvertently. Most crucially, both lead to the erosion of democratic citizenship among Americans whose political power has long been systematically suppressed.

Brown became an organizer after seeing how challenging it was for her parents to provide basic necessities like food, housing, and health care when she was growing up. As a result, they often turned to programs like Medicaid and food assistance. “Eventually we did get off of those programs. We didn’t need them for my whole lifetime, but we were very much a working-class family,” she said.

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I spoke with Brown just outside The Greenbrier, a tony luxury resort in the Allegheny Mountains, where weekend rates typically range from $358.00 to $628.00. At the time, it was playing host to nearly 300 Congressional Republican lawmakers, along with Vice President Mike Pence and President Donald Trump, who were all gathered for an annual policy retreat. Brown was one of the lead organizers for a protest—helping to bring in more than 500 activists, union members, and storytellers from across the country.

Sammi Brown

Dominating discussions this year were cuts to a wide range of health, food, and housing programs—the very programs Brown turned to as a child—all in the name of “welfare reform.” Despite resistance from Senate Republicans, House Speaker Paul Ryan and the hard-right Republican Study Committee were making a Sisyphean effort to build support for a wide range of cuts this year—starting with Medicaid.

According to reports from the retreat, it all came down to messaging. “You’ve got to get the framing or the phrasing right,” Republican Study Committee Chairman Mark Walker told Politico. “When we talk about ‘Medicaid reform,’ that’s not a great buzz phrase.” Lost on Walker was the fact that the cuts themselves are unpopular, not just the salesmanship.

It was ironic that the House and Senate Republican conferences chose this site for a conversation dedicated to slashing the safety net. West Virginia has the second lowest per capita income in the country. More citizens turn to Medicaid, Social Security, and food assistance than virtually anywhere else in the country.

More than 500,000 West Virginians—nearly a third of the population—get health insurance through Medicaid, making it the state with the highest share of its population covered by the program. This includes the majority of all children in the state and more than three-fourths of nursing home residents. Congress’ proposed repeal of the Affordable Care Act, for example, would have taken away Medicaid coverage from 227,000 West Virginians by 2029—equivalent to nearly half of those currently receiving Medicaid in the state.

The state has also been ravaged by the opioid epidemic. Fatal drug overdoses in West Virginia dwarf every other state in the country. In 2016 alone, 818 people lost their lives to drug overdoses—a 400 percent increase from 2001. Nearly 9 in 10 involved at least one opioid. And, according to a report released days ahead of the retreat, drug wholesalers flooded one West Virginia town with more than 20.8 million prescription painkillers between 2008 and 2015. Nationwide, Medicaid covers about a quarter of all substance abuse treatment. But it is particularly critical in West Virginia. Medicaid covers up to 45 percent of medication-assisted treatment for opioid misuse in the state.

*              *              *

Local rallies have become almost commonplace in Trump’s America. Indivisible, for example, now counts more than 5,800 local groups (at least 2 in every Congressional district), many of whom hold local actions and confront members of Congress on a regular basis. Still, it’s rare to gather so many activists from across the country in a single place. But something about the topic of this year’s retreat drew a crowd.

David Stauffer travelled from Waynesburg, Pennsylvania—a working-class town about an hour south of Pittsburgh. His grandfather, father, and uncle all worked in the coal mines in Greene County. Stauffer tried to buck the family trend by enlisting in the national guard at 18. “I wanted to serve my country … there was no other jobs in Pennsylvania other than coal mining,” Stauffer told me. “My uncle was a coal miner. He said, ‘David, you don’t want to go to the mine.’”

Stauffer served as an air technician until he injured his knee on a fishing trip and was no longer able to serve. After he was discharged, he spent years working odd jobs—at the sheriff’s department in Waynesburg, at the mine as a security guard, driving trucks. But when his brother became ill and turned to Medicaid, he needed a full-time caregiver. “My brother is in a wheelchair for the rest of his life,” Stauffer said. “He needs a caregiver. I lost my job working security.”

He travelled some 200 miles to West Virginia because he’s worried about cuts to Medicaid. “Without Medicaid, [my brother] wouldn’t be able to survive,” Stauffer said. “He can’t have a job, because he has a medicine pump in his stomach … Trump’s hurting coal mining communities. He says he’s trying to help but he’s not. He’s harming us. And it’s wrong.”

*              *              *

Hector Vaca grew up in an immigrant family in New York City. “My parents had to work three jobs, each. Sometimes my dad had four jobs in order to raise four kids and just to keep a roof over our heads, continuing paying the mortgage,” he said.

“There was a time in my life when we lived on food stamps. This was before they were EBT, when they were still paper money,” said Vaca. “We’d have milk and bread in the fridge for like a day or two and we had to get creative with what we ate at the house … We couldn’t afford health insurance when we were little, so we depended on Medicaid.”

Hector Vaca

After the Great Recession hit, his father lost his job working as a car mechanic. Months later, he took his own life.

Vaca came to West Virginia because of his father’s death. “I do this … so that no other family would lose any more family members,” he told me. “We benefited from that system because we needed it, because my parents who were here with documentation worked hard and they deserved it.”

*              *              *

Coverage of policy debates, like most coverage of Trump and Congress, focuses mainly on the political consequences or the legislative jockeying. Little attention is given to the people affected—the organizer from West Virginia, the caretaker from Pennsylvania, or the proud son from North Carolina. Ignored is the shear breadth of economic challenges Americans face. According to a recent survey by the Center for American Progress,* 70 percent of voters reported having at least one serious economic challenge within the past year. Forty-two percent said they had trouble paying a credit card balance, and 48 percent of Americans said they had a serious problem “finding a decent job with good wages.”

Asked why so many people were protesting, Sammi Brown’s response was simple: “We have folks that are working multiple jobs. They’re doing everything they can—and they should have quality of life, but we’re not affording them that.”

Zahra Mion contributed reporting to this article.

*TalkPoverty is a project of the Center for American Progress.

In a series of tweets, Seema Verma, the Trump official who oversees Medicare and Medicaid, argued that work requirements will “improve health outcomes” and cause improvement in “mental and general health, and well-being.” The administration’s guidance allowing states to deny people Medicaid makes similar claims.

#Claimants who move off benefits and (re)-enter work generally experience improvements in income, socio-economic status, mental and general health, and well-being.” #TransformingMedicaid https://t.co/TgmgCk6Bb2

— Administrator Seema Verma (@SeemaCMS) January 11, 2018

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The administration points to two research reviews it says support its case for allowing state officials to deny Medicaid to low-income people not meeting state work requirements. In fact, neither of the studies say that imposing work requirements as a condition of receiving health care will improve health. Moreover, both of the studies rely heavily on research from countries with universal health coverage—that is, countries that provide health care and coverage to all of their people regardless of employment status and without imposing work requirements. In these countries, people are empowered to make work and education choices without being threatened with the loss of health insurance if the state doesn’t like their choices.

In short, the reviews don’t tell us anything about the impact of Medicaid work requirements on health. What they actually do tell us is the that relationship between health and employment is much more complicated than the administration suggests.

The most rigorous and recent of the two reviews found insufficient or inconsistent evidence that employment was beneficial for general health, except for depression. The authors also cautioned that selection effects—the fact that more healthy people are more likely to work—may have caused an “overestimation” of their findings that work was beneficial for depression. In theory, one could conduct a demonstration study that denied employment to some people while providing it to others in order to isolate the causal effects of employment on health. But, as the authors note, this would be unethical.

The older and less rigorous of the two reviews, a 2006 evidence review commissioned by the United Kingdom’s Department of Work and Pensions, concludes that “the balance of the evidence” shows that work is “generally good for health and well-being, for most people.” But it goes on to detail what it calls “major provisos.” These include that “health effects depend on the nature and quality of work” and its “social context,” and that “jobs should be safe and accommodating.” The more rigorous review makes a similar point and notes research concluding that “low-quality jobs can lead to reduced health, while high-quality jobs can lead to improved health.”

These findings about how low-quality jobs can negatively impact health are particularly relevant for Medicaid beneficiaries. As researchers at the Kaiser Family Foundation have documented, most non-elderly Medicaid enrollees (who do not also receive SSI disability benefits) are employed, but typically in poorly compensated jobs that do not offer health insurance. Among non-elderly Medicaid enrollees who are not employed, physical and mental health impairments are common.

If we truly care about able bodied, working age adults on Medicaid, then we have a responsibility to help them rise out of poverty. https://t.co/0cXxSyAmQF

— Administrator Seema Verma (@SeemaCMS) January 17, 2018

If the state officials and the administration want to improve health and well-being, they should offer real help with finding well-paying, safe, and accommodating work to all Medicaid enrollees, but on a voluntary basis. This help should include child care assistance and other work supports. But allowing state officials to coerce people to take any job—or work even more—under threat of losing their health insurance takes away people’s agency and will cause far more harm than good.

Finally, if the administration is serious about improving the health of working-class people, then it should stop rolling back important labor standards and worker protections. And it should get serious about improving job quality, including by raising the minimum wage as President Trump made a campaign promise to do.

Bottom line: All the happy Orwellian Twitter talk from Trump officials won’t change the fact that their policy will hurt millions more than it will help.

New analysis from the Center for American Progress estimates that as many as 6.3 million people could be at risk of losing Medicaid under this new policy.

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Adding so-called “work requirements” to Medicaid has long been on GOP leaders’ wish list. Most recently, it emerged as part of Congressional Republicans’ unsuccessful efforts to repeal the Affordable Care Act last year. And Republican governors in a slew of red states have been chomping at the bit to add work requirements to their Medicaid programs; while all eyes were on the health care debate in Congress, at least 10 states requested authority to do so last year alone, with the potential to impact 640,000 people. More states are likely to follow suit after the release of today’s guidance.

While the policy might sound reasonable at first blush, upon closer inspection it’s just another strategy for ripping health insurance away from the people who need it most—unemployed and underemployed workers struggling to make ends meet.

According to the Kaiser Family Foundation, about 25 million working-age people were covered by Medicaid in 2016. Most—roughly 60 percent—were working themselves, and nearly 80 percent lived in working families. And of those not currently working, 6 percent were looking for work, 30 percent reported caregiver obligations, 15 percent were in school, 9 percent were retired, and just over one-third reported facing health problems.

Taking away these people’s health insurance isn’t just cruel; it’s wildly counterproductive. Study after study shows that having health insurance is associated not only with better health but also with increased work capacity, which translates into higher wages and earnings. Medicaid plays a central role in making it possible for people with disabilities and chronic health conditions to work, as it is the nation’s largest provider of home- and community-based services such as personal attendant care.

History also shows that work requirements not only fail to improve long-term employment outcomes—they actually leave people worse off.

In 1996, as part of the legislation that famously “[ended] welfare as we know it,” Congress converted Aid to Families with Dependent Children into Temporary Assistance for Needy Families (TANF) and introduced a new policy requiring most adult recipients to participate in qualifying work activities as a condition of receiving cash assistance. While some TANF recipients did initially experience gains in employment—thanks in large part to the strength of the labor market during the booming economy of the 1990s—those gains ultimately proved to be short-lived. Few TANF recipients were able to secure stable, long-term employment with decent wages. Many others were unable to meet TANF’s stringent work requirements at all, due to employment barriers such as caregiving obligations, health problems, low levels of education, and criminal records. As a result, they were left without assistance even though they hadn’t found work.

Notably, while the letter sent to state Medicaid directors today says Trump’s new policy won’t apply to pregnant women or people receiving Medicaid on the basis of disability, the guidance itself admits that this will fail to protect the many people with disabilities and health conditions who don’t fall into that bucket, noting: “CMS recognizes that individuals who are eligible for Medicaid on a basis other than disability (and are therefore classified for Medicaid purposes as ‘non-disabled’) may have a disability under the definitions of the Americans with Disabilities Act.”

A study by researchers at the University of Michigan released in December suggests that people with disabilities and health conditions make up a large part of the population at risk of losing Medicaid under this cruel new policy. Two-thirds of Medicaid enrollees in that state who were not currently working reported a chronic physical illness, 35 percent reported having a diagnosed mental illness, and one-quarter reported having a physical or mental condition that interfered with their ability to function at least half of the time.

Meanwhile, the letter also concedes that many people may need “supportive services” such as job search help, child care assistance, transportation, or disability-related supports in order to work. But it goes on to make clear that states cannot use federal Medicaid funds to provide these types of services and supports.

In short, work requirements don’t help anyone work. Rather, at their core, work requirements are premised on a set of myths about poverty. First, that “the poor” are some stagnant group of people who “just don’t want to work.” Second, that anyone who wants a well-paying job can snap her fingers to make one appear. And third, that having a job is all it takes to not be poor.

Reinforcing these myths is core to Trump’s divide-and-conquer playbook. That’s why he’s so keen to smear Medicaid and other popular programs as “welfare”—a term with a deeply racially charged history, evoking decades of racial stereotypes about who is poor in this country. By using dog-whistle terms like “welfare,” he’s betting that he can paint people who turn to Medicaid and other public programs to make ends meet as modern-day “welfare queens” so we don’t notice that he’s coming after the entire working and middle class.

Meanwhile, a big part of the story here is an unforgiving low-wage labor market dominated by poverty wages and unpredictable work schedules. A minimum wage worker in 2016 had to clock an additional 244 hours to earn the same amount in real terms as she did the last time Congress raised the federal minimum wage back in 2009. As a result, many low-wage workers need to turn to public programs such as Medicaid and nutrition assistance, which have come to function as work supports when wages aren’t enough.

If Trump wanted to keep his campaign promises to the “forgotten man and woman,” he’d embrace policies that address the real problems facing struggling workers and families, like raising the minimum wage. Instead, the president remains hell-bent on taking health care away from tens of millions of Americans, over the objections of the American people—and he’s made it clear that he’s done waiting for Congress.

Editor’s note: To get involved and fight back, visit HandsOff.org to learn more about the Hands Off campaign to stop cuts to health care and other basics that help families make ends meet. 

Updated: This article was edited to include the number of people who would lose Medicaid in the ten states with pending waiver requests. 

This mindset is also reflected in our national politics and apparent in the rhetoric employed by the Trump administration and the GOP in their 2018 budget proposals, which would severely cut safety-net programs.

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“There’s a dignity to work, and there’s a necessity to work to help the country succeed,” White House Budget Director Mick Mulvaney told CNN at the end of May. Mulvaney added that the United States should measure its success “by the number of people we help get off of those programs and get back in charge of their own lives.”

The Department of Health and Human Services has used the same rhetoric to justify specific attacks on Medicaid. Only hours after she was sworn into her post, Seema Verma, administrator of the Centers for Medicare and Medicaid Services, and her boss, Health and Human Services Secretary Tom Price, sent out letters to all the nation’s governors urging them to impose insurance premiums on Medicaid recipients and provide work incentives.

Statements like these—and other calls to add work requirements to Medicaid eligibility guidelines—ignore the realities of who the program serves and its actual impacts. For those able-bodied people on Medicaid, the majority are already working. And for the 7 million nonelderly adults with disabilities for whom Medicaid offers primary or supplemental coverage, expanded access to Medicaid contributes to higher employment rates.

I’m one of those people. Eight years ago, I completed my master’s degree with one plan in mind: to launch a successful multi-decade career in environmental policy that would require regular overtime, frequent travel, and at least eight hours a day sitting at a desk and staring into a computer. I made this plan despite a history of sporadic health issues that tended to lay me out completely for several days every month, and debilitating headaches a few evenings every week. It wasn’t until a few years ago, when new diagnoses explained my daily struggle with overwhelming pain and fatigue, that I finally admitted to myself that my health status would prevent me from pursuing full-time work. Since then, I have survived by working a patchwork of part-time positions and freelance gigs, which has lowered my income and made me eligible for Medicaid.

And I am not alone.

According to recent data from the Bureau of Labor Statistics, 34 percent of workers with a disability were employed part-time in 2016, compared with only 18 percent of workers with no disability. Part-time jobs in the United States usually pay low hourly wages and tend not to offer crucial benefits such as health insurance: only 19 percent of part-time workers have access to medical care benefits.

For millions of disabled people in this position, the Affordable Care Act has filled a crucial need by expanding Medicaid coverage. Medicaid expansion significantly raised income requirements (by more than double) for approximately 11 million people living in the 31 states and the District of Columbia that adopted it. It also opened up enrollment to some childless adults, and dropped stringent asset limits. This meant that many more disabled people were now able to work—or work more hours and make higher wages, as well as have more savings—than prior to the expansion.

This was confirmed by a collaborative study released earlier this year that found that working-age adults who identify as having disabilities were much more likely to be employed in Medicaid expansion states than in non-expansion states.

“Having access to comprehensive insurance without having to go through a lengthy and demoralizing disability determination process is very important,” says Jean Hall, Director of the Institute for Health and Disability Policy Studies at the University of Kansas and lead author of the study. “Medicaid expansion allows people with disabilities to work more, and accumulate assets, without fear of losing their eligibility for Medicaid coverage.”

The recently-won expansion has been under continuous threat as Trump and Congressional Republicans have tried to follow through on years of promises to repeal and replace the ACA. The most recent effort, the Graham-Cassidy bill, would slash Medicaid funding and allow insurers to charge higher premiums for those with pre-existing conditions. These changes could have particularly severe consequences for people with chronic health conditions who have Medicaid through the expansion.

Kelly O’Brien of Sandusky, Ohio, has myalgic encephalomyelitis, postural orthostatic tachycardia syndrome, and peripheral neuropathy. She works part-time in a bridal shop that offers her flexible scheduling and other accommodations while she builds up a freelance writing business on the side.

“My medications would cost more than I make in a month,” says O’Brien. “Yet without my medication, I wouldn’t be able to work at all and thus wouldn’t have any income.”

Even for those who can work full time and have access to so-called comprehensive health insurance through their jobs, the price of their co-pays and deductibles for treatments to manage their conditions can erase most—if not all—of their income gains.

Take the case of 38-year-old Valéria Souza, who recently moved from Missouri back to her home state of Massachusetts. Souza has multiple sclerosis and was spending an average of $6,000 to $10,000 annually out of pocket on co-pays and deductibles to manage her illness. This was despite having what was considered a “good” health insurance plan with her former position in academia. These expenses comprised between 30 to 50 percent of her yearly income, eventually forcing her to work several part-time jobs in addition to her full-time career and forcing her to work in excess of 60 hours a week to compensate for her financial losses.

“This situation is not sustainable for someone with MS as a long-term life plan,” says Souza. “At some point, I won’t be able to work this much.”

This is one of the main reasons why Souza moved back to her home state: Massachusetts expanded Medicaid, while Missouri did not.

“I would like to know that Medicaid is available to me if and when I need it,” she says. Though, if Graham-Cassidy becomes law, that would threaten Souza’s plans.

For those of us with medical conditions that limit our ability to work full time, Medicaid is often our only option. If our government officials want more of us to have jobs, maintaining and building on Medicaid expansion is one proven way to do that. But if they cut it or scale it back in any way, the consequences for us will be severe.

Now, in some ways, I’m her big sister. I do my best to take care of her.

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Lynn—a 62-year-old army veteran—cannot walk. Her dementia makes it impossible for her to remember to take her medicine. Her forgetfulness has life-or-death implications, since she has diabetes, high blood pressure, and high cholesterol. As a result, Lynn has been in a nursing home for the past four years. Medicaid pays the bills for that—just like it does for most people who need nursing home care—and I’m terrified of what would happen without it.

Lynn joined the army right out of high school. When she was in boot camp, she had a traumatic head injury during basic training. The military doctors held her for observation, diagnosed her with a concussion, and then released her. She served her time as a private, then was honorably discharged and got married.

A few years later, she was struck by a car. She was at a crosswalk, and the car in front of her stopped to let her cross. But the car behind it was impatient, so it swerved around the first car, plowing into the crosswalk and hitting my sister. That left her with another traumatic head injury, as well as the beginning of hip problems that will plague her for the rest of her life.

Over time the hip problems worsened, until she finally had a hip replacement in her mid-50s. She was able to walk without pain for a while, but she then contracted a MRSA infection in her new hip joint. That can happen with artificial joints—it’s rare, but once you have the infection it’s hard to remove. Lynn’s infection spread quickly, and it almost killed her. Doctors tried to treat her with some very powerful drugs at first, which made her thoughts so fuzzy that she said her brain was buzzing.

Eventually, doctors had to remove her hip bone to control the MRSA. Medicaid paid for this surgery, too—otherwise, we wouldn’t have been able to afford it.

Just four years ago, Lynn was working multiple jobs to put her daughter through college: in the cafeteria at her daughter’s school, at Walmart, and at a deli. Now Lynn can no longer walk, or work. The doctors say the drugs impaired her brain and made her dementia onset much more quickly.

But this isn’t a sob story. I don’t want you to feel badly for her, or take pity on her. Lynn is still the same person I’ve always known, full of life and warmth. She can break the tension in a moment better than anyone I know. I still remember a moment a few years ago, when she was recovering from her first hip surgery. She flew into Washington, D.C., to visit us, and we were trying to get her out of baggage claim and into the elevator in her wheelchair. The doors started to close, and nobody wanted to hold them—she was far away, and she was moving so slowly. But she shouted, “I’m coming as fast as I can!” across the airport. They actually held the door for her. In the elevator, she chatted with them amicably, asking how their Christmas was going. Strangers were smiling and talking to her—that’s a rare sight in D.C.

Lynn would be lost without Medicaid. She served her country and worked hard to provide for her family. She’s not trying to take more than her fair share of the pie. She’s just somebody who needs care—and she didn’t expect to need the care that she needs as young as she is.

When our elected representatives decide to cut Medicaid—whether through repeated attempts to repeal the Affordable Care Act or a budget that cuts $3.6 trillion from services such as Medicare and Medicaid—they should think about what this means to people like me and my family. They should think about Lynn, and the millions of other veterans who have turned to Medicaid.

Reagan set the tone for a conservative war against Medicaid that is now in its 52nd year. Recent congressional proposals to repeal and replace the Affordable Care Act would have reduced Medicaid enrollment by up to 15 million people, and, despite being defeated, congressional Republicans aren’t done yet: It’s likely they will attempt to gut the program during the upcoming budget debate. Meanwhile, more than half a dozen conservative governors are trying to take a hatchet to the program—at the open invitation of the Trump administration—through a vehicle known as a “Medicaid waiver.”

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Waivers are intended for state pilot projects designed to improve health care coverage for vulnerable populations. But that’s not what conservative governors are pursuing. In Maine, for example, as citizens prepare to vote on a referendum that would force the state to expand Medicaid to 70,000 people, Gov. Paul LePage (R) is moving in the opposite direction. His Department of Health and Human Services has requested permission to create a 20-hour-a-week work requirement, impose co-pays and premiums, and implement a $5,000 asset cap on Medicaid beneficiaries. The result, health care experts warn, will be that low-income people in Maine will be kicked off the program.

LePage’s administration argues that the work requirement will help people earn more and become more self-sufficient. But according to Hannah Katch, a senior policy analyst at the Center on Budget and Policy Priorities and a former administrator of the California Medicaid program, 80 percent of Medicaid patients nationwide are already in working families. “The vast majority of people who aren’t working are either taking care of a family member, have a physical or behavioral health condition, or are in school, or have a combination of these factors,” said Katch. “While a work requirement is unlikely to help them get a job, it is very likely to take away health coverage from people who can’t work.”

While Maine’s application specifies categories of exemptions for the work requirement—including for individuals receiving treatment in a residential substance abuse program, caring for a child under age 6, or who are “physically or mentally unable to work”—Katch said that the exemptions are likely to be difficult to obtain. “The burden could fall on an individual to prove their exemption,” she said. “If a person is low-income and has a disability, or a substance abuse disorder, or has young children—proving an exemption in a specified time period with the proper and often extensive documentation can be really difficult.” As a result, Maine’s work requirement would likely result in a much broader population being kicked off of assistance than intended—or at least than explicitly intended. (Maine Department of Health and Human Services did not respond to requests for comment.)

Of equal concern is the people who likely wouldn’t qualify for an exemption under Maine’s proposal. Previously, the state allowed a limited Medicaid expansion for women with low incomes who need family planning services, and for people who are HIV-positive. Katch said that these are two of the groups who could be deemed “able-bodied” and required to work for their coverage—people who clearly need consistent access to their medications. (Low-income parents and young adults aging out of the foster care system are also of particular concern.)

Direct service providers in Maine share Katch’s apprehension. Kara Hay is CEO and president of Penquis community action agency, which serves approximately 17,000 people annually through 80 programs across the state, including Head Start and child care, legal aid, housing, transportation, business training and financial support, health care assistance, and more. Hay said that the state’s waiver request “is not new, innovative, or designed to deliver care more efficiently” to low-income people, as waivers are supposed to be. In addition to a work requirement that offers no access to transportation, child care, or training—common barriers experienced by her agency’s clients—Hay takes issue with the state’s proposal to force people with little to no money to pay co-pays and premiums, and to deny coverage to people with $5,000 or more in assets. Maine used asset tests for public assistance programs for 40 years and they were “complicated to administer, devilishly inefficient, and problematic to document,” Hay said. “They often cause people who would be eligible to give up during the application process.”

That seems to be LePage’s ultimate goal: forcing people out of the program.

Another problem with Maine’s proposal is that with far fewer people having Medicaid coverage, the costs of caring for the uninsured will fall on “rural hospitals and providers—who are the least capable of absorbing these additional costs,” Hay said. “It unintentionally sets up the foundation for a collapse in rural health care. It’s a recipe for escalating rural decay.”

Maine is not the only state trying to tighten its Medicaid requirements. Wisconsin, Kentucky, Utah, Indiana, Arizona, and Arkansas have requested similar waivers. Health and Human Services Secretary Tom Price and the administrator of the Centers for Medicare and Medicaid Services, Seema Verma, have made clear that waivers granted to one state will be an option for other states. That means that for now, the front lines in the conservative war on Medicaid are in the states, where the fight might be a little quieter than in Washington, but equally dangerous.

This article was produced in partnership with The Nation.

Under the Senate’s latest health care bill, my caregivers are at risk of losing their jobs. And if they lose their jobs, my life will be at risk.

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Six years ago, I was diagnosed with a multi-system disease—myalgic encephalomyelitis, or chronic fatigue syndrome—that inhibits my body’s metabolic system. Although the disease differs from person to person, my condition has been degenerative over the years; for more than a year starting in 2015, it left me unable to speak, eat, or lift my head higher than a pillow.

This is the type of physical debilitation that requires a caregiver.

For the past two years I’ve been completely bedridden, and I’ve hired numerous caregivers to perform myriad tasks for me. They have administered my daily oral medications and flushed my IV with syringes full of saline and heparin. They bring me my toothbrush every morning, and they help me go to “the bathroom” by emptying a plastic urinal beside my bed. They help me bathe by placing a flattened inflatable bathtub on my bed, which I scoot onto so they can inflate it around my body. They fill the tub with water so I can clean myself, then they drain it, I towel off, and they deflate the tub so I can crawl out.

These tasks are essential to my health, and I depend on my caregivers to help me perform them. But the stark reality is that I simply couldn’t afford to employ caregivers without Medicaid.

I receive around 48 hours of paid caregiving every week through California’s In-Home Supportive Services (IHSS), which gets half its funding from the federal government. For the 48 hours a week they cumulatively work, my caregivers are paid California’s minimum wage: $10.50 per hour. Because I believe that is an unfair wage for such a demanding job, I supplement their pay as much as I can —usually an extra two dollars an hour.

Under the Senate health care bill, Medicaid would face massive cuts—up to $772 billion by 2026. Combined with the House budget, which was released earlier this week, those cuts would jump to $1.5 trillion. That would almost certainly cause dramatic reductions to caregiving services in California, as well as every other state in the country. But these cuts will not only impact patients; they will take a toll on the caregiving field and other industries related to health care.

“Caregiver” is an umbrella term that includes several job titles, such as personal care aides and home health aides. These positions account for millions of jobs, and past projections have estimated as much as 38 percent growth in some fields by 2024. But since Medicaid is the largest public payer of long-term caregiving services, the cuts outlined in the BCRA could end up eliminating their jobs, along with others in health care and the broader economy. The Center for American Progress has estimated that the House version of the health care bill—which is substantially similar to the Senate bill—would cost the American workforce 1.8 million jobs by 2022.

Each one of those jobs has dozens of lives attached to it and is part of a vital social equation that nobody should reduce. Not only are jobs and livelihoods at stake, but so is the health of millions of people. Cuts to vital services like Medicaid, Supplemental Security Income, and IHSS will tear down decades of efforts to protect and nurture the working poor, sick people, the elderly, and the disabled.

Instead of giving me the help I need to live and potentially improve my health enough that I can once again contribute to the economy, this bill would put my life in an incredibly vulnerable position. It would also take jobs away from health care professionals like my caregivers. This may be acceptable to some, but to the many millions of people whose fates hang in the balance, it’s entirely unacceptable.

The problem is, I’m a product of that “wasteful spending.” So is my dad. He was a character, and deeply embarrassing in the way that only dads can be. He was known around our small town as the chatty Starbucks regular who would talk to complete strangers for hours or as the old man riding a unicycle (on special occasions, he also juggled and wore a clown suit). At movie theaters, he would stand up and dance during the ending credits, while I quickly walked away so people wouldn’t see us together. He brought a camera with him everywhere, and took pictures constantly, while I attempted to hide my face behind napkins, or my hands, or anything else within arms’ reach. He still framed those pictures, whether or not I was visible—there was one in his bedroom where a volleyball eclipsed my entire head.

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My dad was complicated. He was terrible with money. He ran his law practice on a barter system, trading legal advice and representation for furniture or housecleaning services or—in one particularly memorable instance—three swords.

He was also an addict. This was a surprise to virtually every person he met—myself included. I knew he spent time in rehab when I was five, but I still couldn’t quite believe it when—after ten years of sobriety—he relapsed and disappeared for two days during my sophomore year of high school. He came back, filled with guilt and shame, promising that it would never happen again. But it did happen again, so his wife left him. And then it happened again, and he lost his law practice. And again, and we lost our house. And eventually, it led to a new job working for Mexican drug cartels.

My dad’s story ended the way these stories tend to—he died. But not right away. First he was arrested, under drug charges that would have imprisoned him for 15 years. But after six months, the prison doctors ran some tests on a lump on top of his head. It turned out to be stage 4 melanoma. He was only supposed to live another three to six months, so he was granted a compassionate release from prison.

My dad lived for another 22 months after that—about four times longer than the doctors predicted. He died in the comfort of our home on the evening of October 25, 2010.

Those two years brought my father back to me. He and I became closer than ever—reflecting on the days when his criminal nickname was “el abogado,” when the months he spent in solitary confinement briefly drew out aspirations of priesthood, when he convinced his high school principal to let him grow out a beastly-looking beard to take on the role of Jesus in the annual play, and when we both realized that forgiveness can be the most powerful experience in your life.

His epitaph reads, “Love wins.” Ultimately, it did.

I have always attributed the additional 16 months I had with him to a sense of hope and love brought about by my community. Distantly familiar faces came out of the woodwork to offer emotional support, to help cook his meals, to sit with him to make sure he didn’t fall, to help him shower, and even to pay for his funeral when my mom realized we couldn’t afford it. But I also owe those 16 months to Medicaid, which covered chemotherapy early in his illness and a home nurse when he was too weak to walk. I owe them to Social Security Disability Insurance (SSDI), which helped pay for our biweekly trips to Kerrville, Texas, for clinical trials of Ipilimumab. I owe them to Supplemental Security Income (SSI), which helped my mother—who was working day in and day out to support her ex-husband and their three children—put food on the table. Even after he died, Social Security helped my family stay afloat with modest survivors benefits that my dad paid into over the course of his career.

Medicaid, SSDI, and SSI were as much a part of the community that gave my dad a chance to die with dignity as the Starbuck employees who closed down the shop to go to his funeral. You have all paid into them during your lives, so that when my family needed them, they were there. Thank you for that.

I can never explain how much this support meant to me. But I can say I hope that it’s there for you when you need it. Because it is not wasteful spending. I was not wasteful spending. My dad was not wasteful spending. And you are not wasteful spending.

My name is Samantha and I have been a pediatrician for exactly 360 days. I work in Southwestern Virginia, for a hospital system that also provides care to underserved parts of West Virginia and Tennessee. We mainly work with struggling families that rely on Medicaid to provide health care to their children. That means, at this exact moment, you are debating a bill that would directly impact the children that I took an oath to serve.

I could tell you countless stories of medical crises averted, serious illnesses cured, chemotherapy administered, and families counseled through the parts of parenthood that they often did not anticipate. But you are all intelligent people, and you can imagine these scenarios for yourselves. Even if you can’t, I’d hardly be the first to point these stories out.

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Instead of telling you about what it means to have health care, I want to talk to you about what it means to have health insurance. I want to talk to you about what it means to a parent to worry that they can’t afford the treatment their child needs—and to know, deep down, that they might bankrupt themselves trying to keep their child safe.

First, I want to talk to you about the provisions of your bill that would chip away at coverage for people with pre-existing conditions. Last week, I had the privilege of meeting a young woman and her mother in our clinic. The mother had a heart condition that is often passed genetically from parent to child. As she and I spoke about definitive testing that would tell us if her daughter carries the gene that might cause her to develop the same condition, she started to get nervous.

She was afraid that this test, which could help us treat and protect her daughter, was a medical Catch-22. Without it, we wouldn’t know how to care for her daughter. With it, her daughter might be labeled as a person with a pre-existing condition, which could make her unable to afford the care she needs. And it was all based solely on a tiny gene that has not yet even made her sick.

Even as we told her that her daughter’s heart is currently perfectly healthy—news a mother should get to receive with untainted joy—I could see her eyes fill with tears. She told us that she had been unable to get insurance coverage until recently, because of her heart condition. Insurance companies even resisted covering her children, based on the risk that they may have inherited her heart condition, despite the fact that none of them had been diagnosed.

If you pass this bill, the children who lose their insurance will still come to my clinic. Their parents will bring them even if they aren’t sure how they’ll pay, and even if they know deep down that they can’t. Parents can no more risk the well-being of their ill children than walk on water.

The doctors, nurses, and therapists I work with will still care for these kids when they come. We’ll do it even though medicine is a difficult career. We’ll do it even though it requires sacrifice and emotional risk to care so deeply for these tiny people who need us. We’ll do it not only because it is legally required of us, but because of the little pieces of our souls that our patients have come to inhabit.

I’ll do it for days like today, when I get to see a boy I have cared for since he was a newborn take some of his earliest steps and wrestle through his check-up like it was a game. I do it for the incredible growth I have witnessed in his mom and dad: a young, at-risk couple who have become thoughtful and loving parents over this past year. I do it for the moment when the baby stops pulling on my stethoscope just long enough to give me an unprompted hug, or when I give him a high-five for doing a good job and he gives me high-fives over and over until I absolutely must move on to my next task.

I am asked to give these children the care they deserve, and to do right by them and their families. In return, I get these little gifts now and then. Small rewards for living as “men and women for others”—the core belief instilled in my medical school classmates and me at our alma mater.

I like to think that you all became representatives of the American people with a similar goal—to be “men and women for others.” I like to imagine what our nation might become if lawmakers such as yourselves did your work by the same principles that guide us as caregivers through each day.

I would hope that you choose to live by at least one of our principles, known in ethics circles as non-maleficence. You might be more familiar with its colloquial phrasing, “First, do no harm.” With this health care bill, you hold the futures of millions of Americans in your hands. Please, if you keep nothing else in your heart as you vote in the upcoming days, think of your constituents and hold close the aspiration to “first, do no harm” to those who are depending on you.

With my sincerest thanks,

Samantha Cerra, M.D.

Editor’s note: Some identifying details have been changed in order to protect patient privacy; however, the essential content and experiences represented are recounted faithfully.

In 2010, she went to the eye doctor for difficulties she was having with her vision. She thought she needed a new glasses prescription. Instead, she was admitted to the emergency room because the ophthalmologist thought she was having a stroke or a brain tumor.

Many appointments and tests and anxious weeks later, she was diagnosed with multiple sclerosis (MS). MS is an autoimmune disease in which the body attacks the membrane around its own nerve fibers, causing scar tissue. A typical diagnosis requires two to three lesions on the brain; my sister’s brain had eleven. Because MS attacks the central nervous system, symptoms vary widely, ranging from fatigue and vision problems to seizures and paralysis. The worst part about MS is its unpredictability; one day my sister can seem healthy and the next day she can be overwhelmed with nerve pains, muscle spasms, and immobility.

At the time of her diagnosis, my sister was a 25-year-old stay-at-home mom to her 3-year-old daughter. Her husband’s insurance covered her then. But within a year of her diagnosis, they filed for divorce.

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This is not uncommon for women diagnosed with serious illnesses. A 2009 study published in the journal Cancer found that a married woman diagnosed with a serious disease is seven times more likely to be divorced or separated than a man with a similar diagnosis. Among study participants, the divorce rate was 21 percent for seriously ill women and 3 percent for seriously ill men.

After my sister’s diagnosis, her husband withdrew from the family. He engaged in addictive and destructive behaviors. That left my sister in a position where her access to health care was tied to a marriage that was not good for her or her daughter.

The Affordable Care Act, a.k.a. Obamacare, made it possible for her to live as a single mom with a chronic illness.

It qualified her for Medicaid coverage in Montana. It ensured that she would not be discriminated against in the health care market because she had a pre-existing condition. And it let her choose which treatment plan would be right for her and her body.

For six years, she experimented with different medications, starting with the cheaper ones (which cost $1,000-$3,000 a month). Her symptoms did not improve: Sometimes she relapsed, sometimes she got sicker, and sometimes she had to take drugs to deal with symptoms caused by other drugs. Still, she felt it was worth it to try to slow the progression of the disease.

Last year, she found a treatment that works: It’s called Rituxan and it would cost her $65,000 a year without insurance. It’s part of a chemotherapy treatment she does every few months. It leaves her feeling sick and unable to work for a few days, but it works.

Last spring, Maggie graduated from Montana State with a degree in social work. She recently got a part-time job at an assisted living facility, which is funded in part by Medicaid.

It’s a good fit for her, because full-time work would be incredibly difficult with both her MS and her current treatment plan. It’s also a good fit for her because Maggie is one of the most caring people I know. She works with some of the most marginalized people in our society—elderly individuals, people with mental illness, those with severe disabilities—all unable to work or care for themselves.

The Congressional Republican health care plan could change all of that.

Under their plan, my sister could lose Medicaid because her part-time, low-wage income would disqualify her.

Under their plan, my sister could lose coverage for Rituxan, the only treatment that has worked for her so far.

Under their plan, my sister’s pre-existing condition could be used as justification to raise costs on her medical insurance.

Under their plan, my sister’s mobility and opportunity would be more limited by her economic insecurity than they are by her MS.

This is what it means to be uninsured. It means you cannot live safely and comfortably in your own body.

It is excruciating to have to determine the trade-offs your family can make to maintain your sister’s health care. It is even worse to make those choices, knowing they would become worse under all the new iterations of the conservatives’ health care plan. But the true hell is having to have to do it all in public: To have to write articles like this with personal testimonies, create heartbreaking GoFundMe campaigns, share that video of Jimmy Kimmel talking about his baby with tears in his eyes, in the hopes that they go viral. Maybe, if one of them is sympathetic enough, someone will look my sister in the eyes and decide her pain, and her life, should be taken seriously.

At the very least, today, I will be calling undecided senators in Congress so that they can understand the impact of their vote. But let it be known that it’s only one among hundreds of efforts my family, like so many others, undertake to get access to health care for the people we love.

The conspicuously named HOPE Act (Act to Restore Hope Opportunity and Prosperity for Everyone), introduced by Mississippi State Representative Chris Brown, passed the House and Senate and is now expected to be signed into law. The legislation reads like a compilation of all-time favorites from a conservative wish list: It would enrich a private contractor by outsourcing the work of verifying people’s eligibility for social-support programs, including Medicaid and SNAP (food stamps); throw people who likely qualify for assistance off of these programs; and make it more difficult for people to get food and income assistance in the future.

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It does all of this under the guise of helping people—Rep. Brown described the bill as “an incredible opportunity” to help people “move out of welfare dependency and poverty to a better life.” It’s also about eliminating fraud, supposedly, though legislators offered no proof that this is a problem in the state.

The HOPE Act applies to all Mississippians who receive Medicaid, TANF (income assistance), or SNAP. Anyone enrolled in those programs will have 10 days to reply to a written request for information proving eligibility, as deemed necessary by a private contractor hired by the state. That deadline would be tough for anyone to meet, but the fact that many program beneficiaries are disabled, unemployed, lack stable housing, or are simply living under the everyday pressures of poverty makes the deadline all but impossible for many people.

“Just getting that notice to program participants can be a real challenge,” said Matt Williams, the director of research at the Mississippi Low Income Child Care Initiative. “Then you’re talking about making sense of a lot of highly technical information, and putting that in written form too.”

Currently, a Mississippi Department of Human Services (DHS) caseworker determines eligibility by sitting down with an applicant and sorting through liquid assets, utility bills, loans, child-support payments, child-care costs, employee pay stubs, and other sources of income and expenses. It’s a time-consuming process, but the agency has been rewarded for doing it well. Between FY2012 and FY2014, the department received $8.75 million in bonus federal funds for its SNAP-payment accuracy rates.

Under the HOPE Act, however, that kind of reciprocal relationship and guidance will be gone. “People will have to figure out on their own how to acquire the requested information and then explain it—in writing—within 10 days,” said Williams. “If they don’t, they’re going to be kicked off.”

Rep. Brown and other proponents claim that the state will save money through this privatized system. But the assertion is belied by the state’s own analysis, which was conducted by a private firm that supports the legislation. It estimated a cost of $10 million to $12 million, with about $2.5 million covered by state taxpayers. Williams said even that would be hard to come up with given the state’s tax and budget cuts over the past two years. But the actual cost will likely be much higher, and the study wrongly assumed that the federal government will pick up most of the tab for the privatized system. Tennessee considered nearly identical legislation and found that it would run $81 million with the state covering 95 percent of the cost. The legislators killed that bill.

“We will be out millions of more dollars that could have benefited children, the elderly, and disabled people who are already neglected due to budget cuts,” said Williams.

The HOPE Act will also make it more likely that childless adults between the ages of 18 and 49 will be limited to three months of SNAP benefits in any three-year period, unless they’re working. Under current law, the governor can apply for a waiver to this time limit during periods of high unemployment—during recessions, or for particular regions with high unemployment rates, like the Mississippi Delta. Now it will be up to a hostile state legislature to ask for the waiver. Moreover, if any household is found to be out of compliance with any requirement of SNAP or TANF, the children lose benefits, too.

Mississippians can thank the Foundation for Government Accountability—an ally of the American Legislative Exchange Council and an affiliate of the Koch-funded State Policy Network—for providing Rep. Brown with the model for this legislation. The right-wing group’s past efforts include mandatory drug-testing for TANF recipients in Florida. Studies showed that there was no greater incident of drug use for people who receive benefits than the general public—and a lower rate compared to all Floridians—so the court struck it down as an illegal search and seizure. The drug-testing also cost the state far more to implement than it saved in benefits denied to the handful of people who tested positive.

Whatever the costs of Mississippi’s new system, proponents claim that they will be more than offset by savings as the private contractor discovers “fraud” and kicks people off of assistance, particularly Medicaid. However, Illinois used a similar system and found that more than 80 percent of cancelled Medicaid cases were simply due to a lack of response from the recipient, and nearly all of them ended up qualifying and reenrolling. The number of cases referred for fraud investigation was, in fact, “negligible.”

Mississippi’s move comes as conservatives across the country are kicking people off of needed assistance, under the pretense of freeing them from “dependency,” or giving states “flexibility” to better meet a community’s needs. Next up? More governors will likely seek waivers from protections for Medicaid recipients so that they can impose new work requirements, higher premiums, and time limits—and offer more largesse to the wealthy.

This post first appeared on The Nation. It has been modified slightly from the original. 

No such luck.

Tuesday night, Secretary of Health and Human Services (HHS) Tom Price and Centers for Medicare and Medicaid Services (CMS) Administrator Seema Verma issued a letter to the nation’s governors laying out their vision for Medicaid. In the letter, they indicate a willingness to waive longstanding rules that are designed to protect low-income Americans from coercion, poverty, and exploitation.

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Price and Verma assert that “rigid and outdated implementation and interpretation of federal rules” hinder the Medicaid program from accomplishing its goals. They reiterate a popular (and false) conservative talking point that by providing states additional funds to expand Medicaid, the Affordable Care Act discouraged them from addressing the needs of people with disabilities on traditional Medicaid. Finally, they lay out HHS’s willingness to grant almost every ill-advised “flexibility” request in the right wing’s wish list on Medicaid—many of which place people with disabilities, seniors, and low-income Americans at extraordinary risk.

Making Medicaid Harder to Access

The letter indicates the Trump administration would be willing to let states introduce premiums and higher cost-sharing for Medicaid beneficiaries.  These measures were rejected under the Obama administration, since they interfere with the program’s ability to serve low-income people. But based on Price’s letter, they now look likely to sail through.

In particular, Price and Verma suggest states may wish to apply for permission to allow “emergency room copayments to encourage the use of primary and other non-emergency providers for non-emergency medical care.” It’s a laudable goal, but in rural areas where there is a shortage of clinicians who accept Medicaid patients—a common problem due to the program’s low reimbursement rates—emergency rooms are often the only practical option for low-income people. Policies that make emergency room visits more expensive are likely to simply discourage people from seeking necessary care.

Price and Verma also suggest states explore charging Medicaid beneficiaries premiums. Such measures ignore the underlying reality that Medicaid serves the deeply poor, who cannot sustain these costs by definition. Still, the suggestion is familiar to Verma—under her leadership as a health policy adviser to then-Governor Mike Pence, Indiana introduced monthly premiums in 2015. Failure to pay them was grounds for losing coverage, or having less access to vital health care services.

This newfound flexibility would also make it possible for states to enact damaging policies that they have been requesting for years. Arizona, Indiana, Kentucky, Montana, and Arkansas have all previously requested permission from the federal government to impose work requirements on Medicaid, which would deny people access to the program unless they are employed.

Arizona is also pursuing a five-year cap on Medicaid benefits. Under the plan, an individual must either be working full time or be receiving disability benefits from the Supplemental Security Income (SSI) or Social Security Disability program in order to keep Medicaid benefits past the five-year cap.

Both work requirements and time limits are likely to disproportionately impact people with disabilities. Even though the time limit proposals provide exemptions for people who are receiving benefits through SSI,  many disabled adults qualify for Medicaid on the basis of their income—not their disability status with the Social Security Administration. That’s because many disabled people are unable to navigate the Social Security Administration’s complex bureaucracy or, particularly among people with psychiatric disabilities, may not be fully aware of their own disability. As of 2009, 1 in 5 adults eligible for Medicaid on a basis other than disability (2.3 million people) and 1 in 10 children eligible on a basis other than disability or child welfare assistance (about 3 million children) had a mental health diagnosis.

As for work requirements, people with disabilities are more likely than other Medicaid recipients to be unemployed. These measures would place them at risk of losing the health care coverage that would help them enter or return to the workforce. Indeed, where Medicaid has been expanded, research has shown that participation in the workforce for disabled adults has increased.

Weakening Protections Against Institutionalization

In their letter, Price and Verma also indicate an intent to weaken vital Obama administration protections for seniors and people with disabilities.

In 2014, the Obama administration issued a rule designed to protect seniors and people with disabilities who receive home and community based services. The Home and Community Based Settings Rule helps ensure that when states fund community services for people with disabilities, they do so in a manner that promotes integration instead of replicating the isolation and control of institutional environments.

The Settings rule requires every state to ensure that those receiving community supports have the right to do basic things like invite visitors into their own home, choose when they eat or what they do during the day, have legally enforceable rights under a lease, and possess options as to where to live other than group homes and other ‘disability-specific settings.’ States have until 2019 to comply with the Settings rule, and a broad range of flexibility to implement it in a way that best meets the needs of their residents.

The rule is designed to protect individual liberty, so that Americans will not lose control over their most basic choices by virtue of old age or disability. Prior to the Settings rule, states were moving to fund community-based services on the grounds of old institutions or by organizing segregated villages “clustering” adults with intellectual disabilities all in one place, limiting contact with the broader society. The Obama administration rightly recognized that these “gated communities” grouping people with disabilities together to get services were institutions by another name, so it limited states’ ability to fund them with scarce community services dollars.

But Price and Verma intend to move the implementation date from 2019 to an unspecified period in the future. Beyond that, their letter also calls for rolling back federal oversight, placing individuals with disabilities at greater risk of warehousing by state governments that are too often willing to defer to service providers about the level of rights their disabled residents should be afforded.

Elsewhere in the letter, Price and Verma express interest in revisiting 2016 Obama administration regulations governing how and under what circumstances states can contract out the operation of their Medicaid programs to private insurance companies, while fast tracking further state requests for “flexibility” in Medicaid.

Advocates at the state level must seek to organize in order to stop the worst of these ill-advised “flexibility” requests that are emerging from state legislatures and state Medicaid agencies. And governors in both parties must be told in no uncertain terms that taking advantage of the Trump administration’s offer to allow the gutting of Medicaid will not be viewed kindly by their voters.

Though this administration fails to recognize it, the rights of people with disabilities deserve federal protection. Just as states frequently fail to protect the rights of racial and ethnic minorities, women, and the LGBTQ community (all constituencies who are also under attack by the Trump administration), so too are state governments frequently willing to compromise the rights of disabled Americans for the sake of cost, convenience, or prejudice.

We can’t afford to be flexible when it comes to freedom and basic access to health care for every American.

Her symptoms first appeared a little after she turned one. She still wasn’t walking or crawling, but otherwise she was healthy and was hitting her milestones—she could say about a dozen words, feed herself, and play with her toys. But when she was around 14 months old, we noticed that Caroline was making repetitive movements with her hands that didn’t seem voluntary. Within a couple of weeks, she started losing her words and choking on her food. Eventually, she started losing her ability to hold things with her hands. We finally got her diagnosis when she was 17 months old.

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Now Caroline takes about ten different medications, multiple times a day. She takes 4 different types of medication for her seizures, which she has about 90 times a year. Without them, she would probably seize all throughout the day, every day. She undergoes a couple of hours total of lung treatment every day to avoid pneumonia,  and takes other medications to relax her stiff body, make sure she doesn’t vomit all the time,  and help her sleep. Her involuntary movements keep her up at night, and if she didn’t take medication she would only get a couple of hours of sleep every night.

Without Medicaid, I don’t know if we’d be able to afford this treatment. For Caroline, this is a matter of life and death.

Medicaid also offers several hours of skilled nursing care, which allows me and my husband to hold jobs. Without that coverage, one of us would have to quit our jobs—then we would not be able to afford all of the medical care that Caroline needs. That alone would put her life at risk.

I never imagined that I would have a child who would be dependent on us for every aspect of daily living for the rest of her life—from changing her diapers, to repositioning her to make sure she is comfortable throughout the day. And I never imagined that we would depend so much on a program like Medicaid.

But I also never imagined that I could love someone this much.

I want Caroline to live. I want her to feel safe, I want her to feel loved, and I want her to live in our home so that I can take care of her for as long as she is alive. Medicaid is the only way for us to be able to do that.

I would like to invite President Trump to meet Caroline and spend time with her, or with other kids like her. I think he would see first-hand how Medicaid helps us function as a family.

Most Americans see Medicaid as only a health insurance program, but it is also the main source of funding for a wide variety of disability and aging services that keep people out of institutions. From the 93-year-old grandmother who needs an attendant to help her get out of bed, to the 24-year-old with Down Syndrome receiving a job coach, to the 6-year-old with a disability whose parents need support paying for skilled nursing care in their home—the Medicaid program is critical to ensuring the independence and freedom of disabled people of all kinds.

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“Block-granting” the program will transform it from a guaranteed benefit for low-income Americans and people with disabilities to an annual lump sum payment to states that is not tied to the need for services. If an increasing number of people needs these healthcare services, a block grant will not adjust to meet rising demand.

In addition, under the current Medicaid program, the federal government matches each dollar spent by states, enabling policymakers to make new investments toward eliminating waiting lists and broadening available services. However, without the guarantee of matching funds, states will not be able to sustain existing services—much less expand them to meet the tremendous unmet need in the disability community.

In fact, previous block grant proposals resulted in a loss of approximately 1 trillion dollars of federal investment in Medicaid over the next decade.

Additionally, the Trump approach would diminish the federal government’s historic role in using Medicaid funds to deinstitutionalize seniors and people with disabilities. For nearly 20 years—since the Supreme Court ruled in Olmstead v. L.C. that people with disabilities have a right to access supports in the community—federal policymakers have used Medicaid dollars to reward states that moved people out of institutional facilities and instead offer in-home services and supports.

These efforts depend on the federal government using innovative programs like Money Follows the Person. This program helped more than 63,300 people with disabilities leave institutional settings by providing an enhanced federal match rate to states to cover the full cost of supporting a person in the first year after they leave an institution.

In the absence of a federal role in Medicaid to promote community living, people with disabilities will find themselves at greater risk of institutionalization—despite the fact that they overwhelmingly express a preference for living in their own homes and communities.

As we fight back against Donald Trump’s assault on so many different communities, people with disabilities supported by the Medicaid program deserve our full advocacy and activism too.

Much of the conversation around the Affordable Care Act—and its potential repeal—has focused on numbers and figures: bending the cost curve, lowering the insurance rate, or slowing health care inflation. But lost in this conversation are the millions of people who owe their medication, treatment, preventive care, and in many cases their lives to the Affordable Care Act.

Representative Tom Price, Donald Trump’s pick to lead the Department of Health and Human Services and oversee the ACA repeal, has proposed a replacement for the law that would leave young people, Americans with pre-existing conditions, women, and people with disabilities at the mercy of the health insurance industry. This would quite literally put the lives of his own constituents at risk.

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Below are the stories of three people from Tom Price’s district in Georgia who owe their health coverage to the Affordable Care Act.

1. Vicki Hopper

Vicki Hopper had been uninsured for nearly two years before she purchased health insurance on ACA exchanges in Georgia. Two days later she went to have a mammogram and was told to come back for a more extensive evaluation. Two days after that, she found out she had breast cancer. Since then, she has had 10 surgeries, including biopsies, a double mastectomy, and reconstructive surgery.

In Vicki’s case, the Affordable Care Act may have quite literally saved her life. Mammograms, let alone cancer treatment and surgeries, are incredibly expensive and would have likely been impossible without health insurance coverage. Even if Vicki had found out she had breast cancer, insurance companies would have been able to charge her exorbitant rates or outright deny her coverage because cancer qualifies as a pre-existing condition. But under the ACA, routine health benefits like cancer screening, treatment, and follow-up care are required.

As Vicki told us, “If it wasn’t for Obamacare, I would be homeless.”

2. The Kush Family

Patricia Kush knows exactly how devastating an ACA repeal would be, because she remembers what life was like before Congress passed the legislation. In 2004, Patricia’s husband was diagnosed with diabetes. He was working over 40 hours a week, but his employer didn’t offer health insurance. He tried to get individual coverage through the insurance market, but insurance companies refused to cover his diabetes-related expenses. Because he couldn’t afford an expensive insurance plan and the out-of-pocket costs for diabetes medications, he went without health insurance.

In 2007, Patricia’s husband was hospitalized for serious complications from his illness. He survived, but his time in the hospital cost the couple almost $30,000. “We were lucky, Patricia says, “He didn’t die. The hospital forgave a chunk of the costs, and because of good credit, we were able to get a 10-year loan to pay off the rest of the medical bills. But not everyone is as lucky as we were.”

These days, Patricia’s husband is on her health insurance, but their future is far from secure. “If something happened to me, or I lost my job, and Obamacare had been repealed, he would be in real trouble,” Patricia says. Because he has a pre-existing condition, insurance companies would not be required to cover him if Obamacare were repealed outright. “Even though we don’t currently use the health care exchanges, I feel as if it is very important to tell our story from when my husband wasn’t able to get insurance,” she told us. “It would be devastating for so many families if Obamacare is repealed.”

3. Josh Carter

When his son was born in 2014, Josh was working in a stressful and difficult job. According to his wife Sarah, the anxiety and long hours were placing a major strain on the whole family, but they needed the job to be able to support themselves. By the time their son turned one, Josh’s health and the family’s quality of life were suffering. Josh was eventually able to find a contract job to provide for his family, with one major catch—it didn’t include health benefits. But because Obamacare provides people with access to insurance marketplaces, he was able to find health coverage for him, his wife, and his baby through the exchanges and take a new job.

As important as coverage was for Josh, it was even more important for his son. Since the ACA was passed, nearly 2 million kids have gained health insurance that includes essential screenings and immunizations. Josh’s son benefited from blood pressure screening, vision screening, lead screening, and oral health risk assessments.

“My husband would never have been able to take this opportunity if it wasn’t for the ACA and the ability to buy affordable health insurance outside of his employer,” his wife Sarah says. His contract job turned into a permanent job that he loves—an opportunity he would not have had without access to safe, affordable health care.

If Tom Price listened to his constituents, he would hear thousands of stories like these. Vicki, Patricia, Josh and their families all benefited from coverage under the Affordable Care Act. In Vicki’s case, it probably saved her life. Repealing the Affordable Care Act without a replacement that covers the people who currently depend on it would simply cost lives.

If Tom Price is going to continue his plot to repeal the Affordable Care Act, he owes people like Vicki, Josh, and Patricia a plan that ensures they can continue to get the coverage they need.

For months, Trump has been all over the map: One day he’s pledging to provide “insurance for everybody,” the next he’s considering a so-called “replacement” plan that would pull the rug out from under some 21 million seniors, people with disabilities, children, and workers.

But on Wednesday, he took his cluelessness and unpredictability to a new low when he declared, “Whether it’s Medicaid block grants or whatever it may be, we have to make sure that people are taken care of.”

As fans of the 1980s cult classic The Princess Bride, there is only one appropriate response:

There are few surer ways to guarantee that people will NOT be “taken care of” than converting Medicaid into a block grant—a technical term that in reality means massive cuts.

Converting Medicaid into a block grant would end the program’s promise of health insurance for all eligible individuals. It would also slash the federal funding that states receive to run their Medicaid programs, forcing them either to make up the difference with money from their own coffers, or (much more likely) to make huge cuts in the coverage they provide to their residents. Faced with inadequate resources, states could have little choice but to institute waiting lists for coverage or cap enrollment—leaving millions of Americans without the care they need.

In fact, an Urban Institute analysis of a past GOP proposal to block grant Medicaid estimates that an additional 14 million to 20 million Americans would lose coverage under a Medicaid block grant—that’s on top of the 30 million who would lose coverage under ACA repeal and elimination of Medicaid expansion.

This isn’t a new idea. Congressional Republicans—including Representative Tom Price, Trump’s pick to lead the Department of Health and Human Services—have long had Medicaid block grants on their wish list. But what’s still unclear, as Trump swings recklessly from promising universal coverage to considering slashing health care for people who can’t afford insurance, is whether the President-elect is actually changing his opinion or if he is just so ignorant on health care policy that he doesn’t understand what he’s saying.

In either case, we can be sure of one thing: Trump’s willingness to embrace life-threatening policies without even making an effort to understand them is:

On the surface, I don’t have much in common with its residents. I’m a black American. I’m pro-choice, pro-LGBT rights, and a feminist. I’m a lifelong progressive. According to multiple media outlets, Owsley’s residents see my beliefs as a direct threat. But we also have deep a bond.

Poverty.

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The median household income in Owsley is just $19,146 per year. The unemployment rate is double the national average, the majority of children live below the poverty line, and in 2011 more than half the county’s residents received food stamps. When Medicaid was expanded under the Affordable Care Act, a whopping 66 percent of residents became eligible. And if you ask them about it, they express deep appreciation. Again and again.

“It’s been a godsend to me,” said a school custodian who suffered from a thyroid condition that practically immobilized her. Medicaid let her get treatment—and it paid for her cataract and carpal tunnel surgery.

Another resident lamented that without Medicaid, she couldn’t pay for the doctor’s visits to keep her hyperthyroidism in check. “If anything changed to make our insurance more expensive for us that would be a big problem,” she said.

Resident after resident in news article after news article acknowledged the price they would pay if these services disappeared. But in the past two years, the residents of Owsley overwhelmingly voted for a governor, and then for a president, who want to eliminate the Affordable Care Act.

Now that the heat of the election has passed, they are anxious. And I understand why.

I’m on Medicaid—a new recipient since the expansion. I have a feeling that several thousand poor white Kentuckians—like this black American—still suffer a twitch of anxiety when they hear the words “payment is due at the time of service,” at the doctor’s office. If you are uninsured and facing a health crisis, those are the scariest words you can hear.

I remember that feeling.

I used to save the change from every purchase I made. I called it “health clinic money,” and I’d collect it for weeks so I could pay for my next $50 doctor’s visit. For more than a decade, my blood pressure readings were at heart attack levels. The doctors at my clinic wanted to see me every month, but I couldn’t always afford it. So I skipped my appointments.

In 2011, I learned my high blood pressure was due to kidney cancer. I was still uninsured, so getting the treatment that could save my life entailed a maze of forms that delayed my surgery for months. I eventually got help from a program in my state called “the Indigent Health Care Fund,” but the funding was spotty before Medicaid was expanded. When I applied, I was told the program was no longer accepting new clients—which happened often, once money for the year ran out—so I didn’t know my surgery had been given the green light until three weeks before it happened.

That’s what life was like for millions of us (and what it has remained like for Americans living in the states that stubbornly refused to expand Medicaid under the ACA). We languished in fear, and said prayers instead of visiting a physician. That’s inhumane. Free or low-cost health care for those who can’t afford it is a matter of basic decency.

If you don’t believe me, ask my friends in Owsley, Kentucky.

The incoming Republican Senate, House, and the new president are determined to repeal Obamacare, and it’s still a mystery when—or if—it will be replaced. Undoing Medicaid expansion and replacing it with a fee paying system will return millions to the days of saving their change before seeking help. Preventative care (the kind that could have caught my cancer earlier) or regular monthly appointments (the kind that could protect me from a cancer recurrence) will be curtailed or gone.

Instead, the poor everywhere will see the familiar front desk sign that reads “Payment is Due at the Time of Service.” And we’ll go home.

“I love people,” she said. “It’s like a gift, a passion.”

Coleman is a home care aide in Tennessee, helping older and disabled people with daily tasks like bathing and cooking in their own homes. Over the 20 years she’s been on the job, she’s learned about golf by taking a client out to play, gone dancing with another, and listened to others talk about their travels around the world. She takes special pride in helping the men and women she cares for stay in charge of their own lives.

“I come into their homes [and] let them know I’m just there to help them,” she said. “I still respect them, that they have independence and are able to function.”

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For all the talk about factory jobs Donald Trump spurred with his rhetoric on trade, one of the clearest ways to improve American jobs has nothing to do with manufacturing. Demand for jobs like Coleman’s—in-home care aides and other direct care workers—is growing fast as the U.S. population ages.

The Bureau of Labor Statistics predicts that the number of personal care aides, who provide non-medical home care, will grow by 458,000 between 2014 and 2024—the most of any single profession. It projects another 348,000 new jobs for home health aides, who do similar work with a greater focus on medical care like checking vital signs and administering medications.

Despite the increase in demand, these jobs are also some of the worst paid in the country: the median annual wage is under $22,000.

Coleman currently makes $8.25 an hour, and the hours she gets can change dramatically from month to month as clients cycle in and out of home care. She doesn’t get paid time off, so she has been putting off surgery for painful uterine fibroids. Her car needs work that she can’t afford, and she’s been paying her rent in installments as her paychecks come in. Lately she’s been particularly low on hours, so she often eats only one meal a day.

“I’ve trained my body to do that,” she said. “I’ve been doing this for a while, so I kind of know my ups and downs.”

The new administration’s plans are unlikely to improve working conditions. Eighty-three percent of home care funding, and 64 percent of health care spending overall, comes from government sources like Medicaid and Medicare. Instead of bolstering the programs so that direct care jobs can pay higher wages, Congress is poised to roll back the Medicaid expansion that has extended coverage to about 10 million people. Tom Price, Trump’s pick for Secretary of Health and Human Services, has also signaled that he’ll push to privatize Medicare benefits. And House Speaker Paul Ryan and Tom Price have both promised to convert Medicaid into block grants for states, which would slow the program’s growth and prevent it from automatically expanding to meet increased need during economic downturns.

This would all add up to less money for care workers—whether it’s funding for new jobs, or to make existing jobs pay better. That’s a burden on the workers themselves, and a danger to the people they care for. During economic boom years, nursing homes sometimes can’t pay competitive wages and end up understaffed. As a result, more of the facilities’ residents end up dying when the economy is strong.

Trump, Ryan, and many others say that we need to spur private-sector hiring and keep government spending down. But industries that create profitable products, from air conditioners to financial derivatives, are increasingly funneling money to the wealthy while employing fewer workers. Meanwhile, the human labor jobs where we are beginning to face shortages, in sectors like education and direct care, don’t lend themselves to for-profit enterprises.

An economic policy designed to work for workers would shape the economy so that the work we really need gets done at a fair wage. That means listening to people like Sepia Coleman, who see their own needs and their clients’ as inseparable. Coleman said she wants to be a professional, unionized worker with the leverage to speak up for her clients and make sure they’re getting the resources they need. She also needs to be able to take a day off when she’s sick and pay her bills on time.

“I deserve to live, not struggle,” she said. “Nobody deserves to struggle every single day.”

Billed as an opportunity for conservatives to outline their major plans on tackling poverty, the forum comes after months of heightened rhetoric  on poverty and inequality—including a poverty tour by then-Budget Committee Chairman Paul Ryan. These events are part of a concerted effort by conservative lawmakers and the media to paint the War on Poverty as a failure, even though the safety net reduced the poverty rate by more than half and lifted 48 million people above the poverty line in 2012.

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Unfortunately, this newfound concern for poverty is at odds with a conservative policy agenda that would exacerbate inequality, hardship, and wage stagnation.

Under his “Opportunity Grant” proposal, Ryan has proposed converting a number of programs to state block grants, a decision that nonpartisan analysis suggests would reduce families’ ability to access key programs such as nutrition and housing assistance. In crafting this idea, Ryan and other conservatives often point to the Temporary Assistance for Needy Families program as a model—even though it does very little to mitigate poverty and hardship and is unresponsive to recessions.

Furthermore, in their most recent congressional budgets, Republicans obtained two-thirds of their cuts from programs helping low and moderate income families, while channeling additional resources towards tax cuts for the wealthy.

South Carolinians like Dr. Ebony Hilton take issue with this approach. Dr. Hilton grew up in poverty in Spartanburg, a city located almost one hundred miles north of Columbia, as the middle child of a mother with only a high school education. Now she earns in the six figures and serves as the first black female anesthesiologist at the Medical University of South Carolina. Dr. Hilton credits federal programs like Pell Grants for much of her success. As she told TalkPoverty, “Pell Grants allowed me to pursue higher education because when I was going through college, there was no option to call home for money for books or tuition or fees. The overwhelming amount of debt can be tremendous and can stop people from taking that extra step to pursue their life passion.”

In addition to attempting to gut programs that invest in people like Dr. Hilton, conservatives have stood in the way of policies that would raise stagnant wages, increase access to health insurance, and allow families to better balance the responsibilities of working and caring for themselves and their children.

For example, although a majority of Republican voters support raising the minimum wage, Republicans in Congress continue to block a minimum wage hike that would actually save $53 billion in nutrition assistance over 10 years. In contrast, longtime state advocates like Sue Berkowitz, who serves as the Director of South Carolina Appleseed Legal Justice Center, view increasing wages as a core component of an anti-poverty strategy: “You can’t not examine why we haven’t increased the minimum wage in [nearly] 10 years. We can say all these wonderful things but without real plans, we’re saying we’re comfortable with people being in poverty.”

And for South Carolinians like Yolanda Gordon, conservative opposition to expanding Medicaid and providing access to paid sick days has proved economically destabilizing. Although Gordon has an associate’s degree in occupational therapy and works part-time at a non-profit helping families of kids with disabilities, she struggles to provide for her three children—each of whom has special medical needs. To add insult to injury, South Carolina has refused to expand Medicaid, leaving her without health coverage.

Due to the intransigence of the state’s conservative leaders, Gordon is one of more than three million adults nationwide—and 123,000 South Carolinians—who fall into what is known as the “coverage gap.” That is, her income is too high to qualify her for Medicaid, but too low for the subsidies she needs to afford health insurance. Without these subsidies, the average cost of the least expensive plan is around $333 per month in South Carolina.

As Gordon battles health issues like high cholesterol—which can lead to heart attacks and strokes—the state’s failure to expand Medicaid has left her in medical purgatory. In a scenario that is all too common, Gordon can’t afford medication and regular checkups without health insurance—in fact, she won’t be able to pay for an exam until next July. In the meantime, she has put herself on a diet to try to manage her condition. As she told TalkPoverty, “For those of us in states that didn’t take part in the Medicaid expansion, we just pray to God that we don’t get sick.”

If she or her children do fall ill, Gordon is not entitled to paid sick days, as employers are not required to provide them under state and federal laws. So if her oldest daughter, who has asthma, is sick at school, Gordon has to choose between earning a paycheck or taking care of her child.

The fact is that people like Yolanda Gordon need more than political posturing—they require higher wages, health care, paid sick and family leave, and increased investments in education, training, and other supports. This summit is an opportunity for conservatives to correct their legacy and set forth a policy agenda that matches their newfound rhetoric on poverty. Let’s hope they rise to the challenge.

But all that changed this February when I was sitting on the train on my way to my graduate class and felt my heart race. I wasn’t nervous or stressed, but could feel my pulse thundering throughout my body—the type of feeling you get when your professor is cold-calling students with questions and you haven’t done the reading.

Chastened, I resolved to start running again and cut back on my caffeine. But my palpitations didn’t go away. After two months of diet and exercise (and persistent chiding from my mother), I reluctantly went to the doctor. I didn’t expect much to come out of it. Why would I need to see a doctor? I was young and healthy and heart problems only happened to older people—I was a young invincible.

My first real sense of concern arose when the nurse practitioner put her stethoscope to my chest and her eyes widened. She proceeded to tell me that I had a very clear heart murmur, a whooshing sound indicating turbulent blood around my heart. An echocardiogram later revealed a mitral valve prolapse, and a subsequent test showed significant regurgitation.

Put into plain English, one of the valves of my heart doesn’t close properly, allowing blood that should be pumped out of my heart to spill back in. In cases like this, the heart compensates and pumps harder to keep the blood out. My doctor recommended mitral valve repair surgery, an open-heart surgery that will require me to stay in the hospital for at least five days after the operation, followed by four to six weeks’ recuperation.

And so, in a period of three months, I went from being a healthy young adult to one in need of heart surgery. I was shocked, but in some ways I was lucky. I was insured, thanks to the Affordable Care Act.

The ACA helped me when I transferred from a full-time position to a part-time one and lost my employer-provided health insurance. After conversations with multiple people about the risks of forgoing health insurance, I decided to purchase coverage through the New York marketplace.

I am incredibly fortunate that I chose—and was able to afford—the route of subsidized insurance premiums. While the cost for mitral valve repair surgery before insurance is around $30,000, the entire ordeal can cost upwards of $200,000. With that high of a price tag, the surgery would have financially crippled me. But due to my insurance, I will only be responsible for copays and deductibles.

I cannot imagine the stress of knowing I could not afford a surgery that could save my life. But that’s a reality for too many Americans—particularly millennials of color—even though the ACA has resulted in the largest gains in coverage in decades. These gaps are in part due to the fact that 20 states have refused to expand Medicaid, which has meant that 3.1 million otherwise eligible adults fall into what is known as the “coverage gap”—they earn too much for Medicaid but too little to access the subsidies they need to afford insurance. Of that group, nearly half are adults aged 19 to 34.

The fact that vulnerable people have been left without insurance doesn’t seem to bother some on the right, including governor-elect Matt Bevin of Kentucky. Although the state has already expanded Medicaid, Bevin has promised to dismantle the state-run Kynect exchange, leaving over 300,000 people that were previously covered through the expansion without affordable health insurance. This disastrous move would undo the immense good that the policy has achieved, including the second largest drop in uninsured rates in the nation.

Furthermore, the Senate recently passed a bill that can only be described as highly destructive. The proposed legislation would nearly double the number of uninsured Americans by dismantling Medicaid expansion for the 30 states, plus the District of Columbia, that have already implemented it. Simultaneously, it would eliminate subsidies that help low-income people purchase coverage.

This proposal represents a callous disregard for the lives of low-income Americans. We should be removing barriers to insurance, not impeding paths to coverage. I hope that our elected officials consider the human costs of their decisions and remember citizens like myself whose lives might depend on accessing that coverage.

This scenario is common. Hardworking direct-care workers give up their jobs because of untreated injuries and chronic illnesses that could have been managed if the worker had access to health coverage. Our new analysis, “Too Sick to Care”, finds that nearly 300,000 of America’s paid caregivers—nursing assistants, home health aides and personal care aides who provide care and assistance to millions of our nation’s elders and people with disabilities—have been denied coverage because they live in one of the 21 states, mostly across the deep South and Midwest, that have rejected federal funds from the Affordable Care Act for Medicaid expansion.

These workers fall into the “coverage gap”—that is, without expansion they are ineligible for Medicaid coverage but earn incomes below the minimum threshold (100 percent of the federal poverty line or $24,250 for a family of four) required to receive tax credits to buy coverage on a state market exchange.

Solving this coverage issue for direct-care workers is significant not only for them but for all of us.

With growing numbers of elders and people with disabilities, the demand for direct-care workers—particularly those who care for clients in their homes—is skyrocketing. The two home care occupations—home health aide and personal care aide—will create more new jobs between 2012 and 2022 than any other occupation.

If a large percentage of these workers are unable to access health coverage, we will find it increasingly challenging to find the care we need for ourselves or our loved ones. For people living with disabilities, this isn’t simply an inconvenience, it is a barrier to exercising their civil rights. On the 25^th anniversary of the Americans with Disabilities Act, it is important to remember that living independently in the community—a right that people have fought for, for decades—requires access to a robust and stable workforce.

But long-term care employers, particularly those who provide supports in private homes, are already reporting that they cannot find or retain sufficient numbers of workers to meet the demand for services. It’s not surprising: average wages are less than $10 per hour; injury rates are higher than in almost all other occupations; and employer-sponsored health coverage is uncommon. The reality is that one in two workers leave the job each year. This turnover is highly disruptive for clients and undermines the overall quality of care.

So what can we do to ensure that direct care workers don’t go without health coverage themselves?

First, and foremost, we need to continue to advocate for states to expand Medicaid coverage. Direct-care workers are 32 percent less likely than other workers to have employer-sponsored coverage, making Medicaid an important option.  Long-term care employers who depend on Medicaid reimbursement for the majority of their revenues often can’t afford to offer health coverage. For example, in North Carolina, the state pays only $13.88 per hour for personal care services. The average wage for a personal care aide is $9.18, making it extremely difficult for the provider to also provide health coverage.

One solution would be to provide a “differential reimbursement rate” for high-road employers who make affordable health coverage for their workers a priority. Under this scenario, states would pay providers an additional amount per hour of service provided. Recognizing the recruitment challenges in their state, the Maine legislature recently increased Medicaid reimbursement to home care providers from $15 to $25 per hour. The legislation is essentially a “wage pass-through.” Almost the entire increase (85 percent) must be used to increase direct-care worker wages and benefits, including health care coverage, as opposed to being used to fund administrative or other agency expenses.

Finally, about 25 percent of direct-care workers are immigrants. Unfortunately, lawfully residing immigrants who have lived in the US for less than five years cannot access Medicaid coverage for themselves or their children, although 14 states extend some health benefits through state programs. Undocumented immigrants are not eligible for either Medicaid coverage or federal subsidies. Recently, the California State Senate passed a bill to offer coverage to undocumented immigrants in their state. A better solution would be for Congress to create a path to citizenship for direct-care workers, thereby expanding opportunities and improving wages and benefits, and growing and stabilizing the workforce.

As Rosalynn Carter once said, “You have either been a caregiver, you are a caregiver, you will be a caregiver, or someone will care for you.” Acknowledging this universal reality, we must expand coverage to all direct-care workers so that they can continue to provide quality care for those who need it while also caring for themselves and their families.

That’s something to celebrate – but the celebration could be short-lived for many people. Instead of figuring out how to get more people health coverage in 2015, many newly-elected and re-elected state legislators and governors are actually plotting how to take health care away from people who just received it for the first time.

It’s a real threat to people who’ve just gained coverage through Medicaid expansion – especially in states where incoming lawmakers are openly hostile to anything related to the Affordable Care Act. Those at greatest risk of losing coverage are women and people of color.

In Arkansas, where 211,000 people recently gained coverage, the state legislature must reapprove the Medicaid expansion plan by a three-quarters majority again in 2015. The incoming Republican governor is unenthusiastic about the plan – and expansion opponents won seats in the legislature. That doesn’t bode well.

In Ohio, where more than 400,000 people have coverage under Medicaid, the state legislature is also required to reauthorize the program in 2015. And in New Hampshire, where more than 20,000 people enrolled in just three months, the new Republican majority in the NH House of Representatives will also take a fresh vote on the program as well.

The continuing failure of more than 20 states to adopt any expansion plans at all, and the prospect of newly elected legislators revoking expanded coverage for hundreds of thousands of residents, represents a serious health threat to women.

A recent 50-state report card on women’s health by the Alliance for a Just Society clearly shows that most of the states that rejected Medicaid expansion have poor or failing records on women’s health. When it comes to ensuring that women have access to health care, the majority of legislators in these states have turned their backs on women.

The 2014 Women’s Health Report Card ranks and grades every state in the country on 30 distinct measures of women’s health. The results: 17 of the 21 states that rejected Medicaid expansion received final grades of C, D or F – and 13 of those states received a D or F.

Politicians in these states are failing women, but they are especially failing women of color who are more likely to be working low paying jobs, not covered by health insurance, and are least likely to have access to medical care.

The number of black women without health insurance is at least 20 percent higher than for women overall in 17 states. The uninsured rate for Latina women is at least 50 percent higher in 44 states. Black, Latina, and Native American women without access to health care have dramatically higher rates of hypertension, diabetes and infant mortality than other women.

While it’s encouraging news that Wyoming, Montana, and even Idaho seem to be moving toward Medicaid expansion, it will also leave our nation with a disturbing illustration of how alive and well racial segregation is in America. Take a look at the map of states that are refusing coverage to their most vulnerable residents: being denied access to health care is the latest Jim Crow.

Lawmakers in states that haven’t expanded Medicaid yet should move quickly to adopt expansion plans this year. If they don’t, they will bear the responsibility for their states falling even further behind on women’s health, and worsening racial disparities in our health care system.

As for lawmakers considering a vote to take health care away from thousands of their constituents, all I can ask is: Seriously? Do you really want to do that?

It’s one thing to stand in the way of people gaining access to quality, affordable health care. But it’s something else when people have just experienced quality, affordable health care for the first time, and then you snatch it away from them.

I can’t imagine that many will take kindly to it. And just in case anybody’s forgotten, there’s another election just a couple years away.

Maybe you’ve heard about the tragic death of 12-year-old Deamonte Driver.  His mom couldn’t find a dentist who would accept Medicaid and she couldn’t afford the $80 extraction for his infected tooth. Sadly, Deamonte’s dental-related death is not an isolated incident. In fact, the American Dental Association (ADA) reports that over an eight-year period, 66 people died after being hospitalized for a dental infection.

The good news is we already know how to dramatically improve access to dental care: allow mid-level dental providers—similar to physician assistants and nurse practitioners—to perform routine care. It’s a safe, cost-effective and productive solution to the crisis.  However, progress is being blocked by an organization that you might least suspect would stand in the way—the ADA.

Mid-level dental providers have been utilized by more than 50 countries for almost a century and are now practicing in Alaska, Minnesota and Maine. In all, more than 20 states are currently considering allowing these health professionals to provide routine and preventive care like cleanings, fillings and some extractions.

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While studies show conclusively that mid-level dental providers deliver safe, quality care, these workers also boost the economy. They allow dentists to grow their practices and increase revenues while treating more patients. The model creates new, good jobs that offer a career ladder for current dental employees. Finally, by improving the health care options available to employees and their families, implementing mid-level dental  helps communities attract new businesses.

While the ADA’s own journal acknowledged “a variety of studies indicate that appropriately trained mid-level providers are capable of providing high quality service,” the organization remains opposed.  The ADA continually cites “safety” as its primary concern, claiming that these dental professionals are not properly trained to perform “surgical” procedures. However, the organization has never been able to point to a single study that supports that view. In contrast, there have been thousands of studies on the quality of care provided by dental mid-levels, and none has ever shown it to be unsafe. The ADA’s voice of opposition is an increasingly lonely one, as the list of supporters of reform is growing—from the American Academy of Pediatrics to AARP.

Change is never easy. When dental hygienists were introduced in the early part of the last century, organized dentistry opposed them.  Likewise, the medical community initially pushed back against physician assistants and nurse practitioners. Now, however, dentists and doctors can’t imagine functioning without these skilled team members, and our health care is far better because of it.

It’s just a matter of time before mid-level dental providers make their way to all 50 states.  Millions of Americans living in pain will then have something to smile about.

The short answer is that over a half million people – in a state of only 4.4 million – sign up for healthcare. About 75 percent of those who signed up didn’t previously have health insurance, so the uninsured population has dropped by 42 percent and the uninsured rate has gone from more than 20 percent to less than 12 percent.

Although the health-care exchanges that were created by the Affordable Care Act have gotten most of the news coverage so far, it’s the expansion of Medicaid that has had the biggest impact, with about 80 percent of the newly insured in Kentucky getting coverage through Medicaid.

In the Supreme Court’s June 2012 decision upholding the constitutionality of the Affordable Care Act, the court ruled that states could opt out of the Medicaid expansion without losing any of their current Medicaid funding. Many policy analysts didn’t think the ruling would have a major impact, since the federal government is paying for the entire expansion for the first three years and gradually reducing to 90 percent in 2020. As MIT healthcare economist and Affordable Care Act architect Jonathan Gruber put it, “When the Supreme Court decision came down, I said, ‘It’s not a big deal. What state would turn down free money from the federal government to cover their poorest citizens?’”

More than a few, as it turns out.

Only 27 states and the District of Columbia have opted into Medicaid expansion.  In Kentucky’s case, it found that expansion would actually save money, delivering a $15.6 billion boost to the economy while creating almost 17,000 jobs—all while insuring its most vulnerable citizens. As Governor Steve Beshear wrote in a New York Times op-ed defending the decision, “…to those more worried about political power than Kentucky’s families, I say, ‘Get over it.’ … and get out of the way so I can help my people. Here in Kentucky, we cannot afford to waste another day or another life.”  He called the reform “the single most important decision in our lifetime for improving the health of Kentuckians” and said the state would “come out ahead in terms of both health outcomes and finances. In fact, if we don’t expand Medicaid, we will lose money.”

In contrast, as Gruber notes, the states choosing not to expand Medicaid “are not just not interested in covering poor people, they are willing to sacrifice billions of dollars of injections into their economy in order to punish poor people. It really is just almost awesome in its evilness.”

The non-expansion states already have, on average, poorer health outcomes and large uninsured populations, and now they will fall even further behind healthier states. The difference is already visible in survey data, according to Gallup.

If the 23 states that haven’t expanded Medicaid were to instead opt-in, nearly 7 million additional people would likely receive coverage. These states are also passing up on more than $400 billion in federal funding.

This slow expansion of Medicaid is not unprecedented. In 1966, when federal funds for Medicaid were first available, only 26 states had programs up and running by the end of the year. By 1970, however, 48 states offered Medicaid. It wasn’t until 1982 that the last hold-out, Arizona, finally opted-in.

One of the tricks for providing healthcare in states where Obamacare is politically unpopular is—well, not too tricky: call it something else. Although ‘Obamacare’ remains unpopular in Kentucky, ‘Kynect’—the name of the state’s health insurance exchange—is popular.

The faith community is also playing a major role in pushing for expansion, arguing that it is a moral issue, and noting Jesus’ role as a healer. Rev. Raphael Warnock, the Senior Pastor of Ebenezer Baptist Church in Atlanta, reminded policymakers that the millions of people caught in the Medicaid gap “are not numbers, these are our church members and family members. So for us, this is a matter of life and death.” Towards the end of August, the Moral Monday Movement marched on 12 state capitols urging governors and legislators to expand Medicaid.

In my own church in Kentucky, I have already seen the benefits of expansion.  One of our members who works for wages that are too low to afford health insurance, but were too high to qualify for Medicaid prior to expansion, finally has access to healthcare. For the first time she stopped worrying about what would happen to her if she were to get sick before she was old enough to qualify for Medicare.

The Robert Wood Johnson Foundation and the Urban Institute have provided a state-by-state breakdown of what opting-out of Medicaid expansion is costing in both human and financial terms. Find out what your state is missing out on, and then urge your decision-makers to follow Kentucky’s lead.

Editors Note: Listed states had not expanded eligibility as of July 2014. They include Indiana, Pennsylvania. and Utah, which have pending waiver proposals to expand eligibility. Totals may not add because of rounding. Note that Pennsylvania announced last month that it will expand Medicaid.