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.

“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.”

If you were wondering whether Donald Trump would keep his promise to protect Medicare from cuts, you just got your answer. Trump’s choice for Secretary of Health and Human Services is none other than Rep. Tom Price (R-GA), one of the country’s leading advocates for turning Medicare upside down.

Over the course of his campaign, Donald Trump assured voters that he would not take an ax to Medicare. In May of last year, he made that particularly clear when he told the Daily Signal, “I’m not going to cut Social Security like every other Republican and I’m not going to cut Medicare or Medicaid.” That fits in well with Trump’s allegedly populist campaign message—in fact, it would fit even better if he pledged to expand Medicare and other social safety net programs.

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But with the election just three weeks in the rearview mirror, Trump is already wrapping his arms around various proposals to gut the social safety net that conservatives have long advocated for—including schemes to weaken Medicare. Price’s appointment is just the latest signal that the incoming administration is willing to put seniors’ health care on the chopping block.

Price has spent his career attacking Medicare. In 2009, he marked Medicare’s 44th anniversary by bashing it. “Nothing has had a greater negative effect on the delivery of health care than the federal government’s intrusion into medicine through Medicare,” Price wrote. Two years later, Price introduced a bill to shift more Medicare costs onto seniors by partially privatizing the program.

After Trump’s election, Price said that he hoped to have a Medicare overhaul “within the first six to eight months” of the Trump administration. He’s planning on using a process called budget reconciliation—which would allow conservatives to push through major policy changes without needing to secure a filibuster-proof, 60-vote majority in the Senate.

Privatizing Medicare has been on conservatives’ wish list for years—Speaker Ryan advocated for it as a way to cut the program’s costs as early as 2010. In a budget proposal that year, Ryan pushed the idea of “premium support,” which would effectively swap out the current Medicare system—where the government pays hospitals, doctors, and other healthcare providers—for one where every person essentially gets a check to buy their own insurance on a private market. Effectively, the plan takes power away from Medicare enrollees and puts it squarely into the hands of private insurers. Ryan’s most recent version of the plan would not eliminate traditional Medicare right away, but it would undermine the program and raise the eligibility age.

The devil is, as always, in the details, and so far Price and Ryan have declined to specify exactly what their Medicare overhaul would entail. But the consequences are potentially very grave: previous proposals would hollow out the current program and replace it with one that covers fewer people, offers its enrollees fewer benefits, and opens the door to charging much higher premiums to seniors facing the most significant challenges to their health.

Despite his campaign promises, it seems Trump is now falling in line . Price’s appointment follows a statement the president-elect put out on his transition website, where he pledges to “modernize Medicare, so that it will be ready for the challenges with the coming retirement of the Baby Boom generation—and beyond.” In the world of political parlance—especially after an election where Trump made a number of explicit attacks against many groups of Americans—this may not sound like much. But in fact, this phrasing strongly suggests that Trump is getting ready to join conservatives’ long-running effort to gut Medicare as we know it.

This is what makes Trump’s pivot on Medicare so disconcerting: It appears to be yet another example of how the populist rejection of establishment politics that defined his campaign’s narrative was just a ruse. Another broken promise originally made in bad faith.

My late grandfather, a New Deal Democrat who proudly cast his first vote for Franklin Delano Roosevelt’s third term in 1940, taught me many things: The airy pleasure of crooners Bing Crosby and Perry Como, how to handicap a horse race, the importance of being on time. (Incidentally, I’m still working on that last one.)

One lesson in particular is sticking out as we get more information on President-elect Trump’s plans for office. It went something like, “A person breaks a promise every single minute. If they’re acting in good faith, you give ‘em another chance. But if you know they aren’t, just go ahead and throw the first punch.”

If there’s a silver lining, it’s that the American people appear to be ready to throw a punch. They happen to like their Medicare the way it is, and fiercely oppose turning it into a premium support-based system. According to a June 2015 poll, only 26% of respondents support transitioning Medicare to a premium support model. In contrast, an overwhelming 70% of respondents said they preferred keeping Medicare structurally as it is.

There is no doubt Donald Trump was wise to the popularity of Medicare when he promised not to cut it a year and a half ago. Now that he seems likely to join in Speaker Ryan’s barrage of attacks on the social safety net, he may be surprised by how his supporters respond.

Many of the long-term services and supports that many people with disabilities need in order to live and work—such as personal attendant care—are not covered under most health insurance plans, and are prohibitively expensive for all but the wealthiest among us. As a result, if, like me, you require long-term care due to disability, you likely have only one option for access to coverage: Medicaid. For many people with disabilities, access to long-term care through Medicaid comes from eligibility for Supplemental Security Income (SSI). SSI also provides a limited cash stipend of up to $733 per month and beneficiaries must maintain assets below $2,000 in order to remain eligible.

The SSI program has powerful work incentives to enable beneficiaries to reach their potential in the workforce. For example, SSI removes one dollar in benefits for every two dollars earned, so that beneficiaries can gradually work their way off of cash benefits while maintaining access to the long-term services and supports that Medicaid provides.

Even if beneficiaries start earning enough to completely work their way off of cash benefits—which occurs when earnings exceed roughly $1,540 per month—they will continue to maintain their SSI and Medicaid eligibility under a special provision called “1619(b)” (as long as they continue to meet the program’s asset limits). Under this provision, beneficiaries can earn up to a certain threshold that varies by state, ranging from $27,244 per year in Alabama, to $65,144 per year in Connecticut. Additionally, SSI beneficiaries who have high medical costs can request a higher “individualized threshold.” While people do not receive a monthly cash benefit when they earn more than the SSI income limit, as long as they remain below their earnings threshold (and maintain assets below the limit) they continue to be a part of the SSI program and have access to Medicaid, including the long-term care many need in order to work. With the help of these work incentives and supports, more than 312,000 SSI beneficiaries were working as of the end of 2013.

Obstacles to Long-Term Employment

While the SSI program’s work incentives and supports are extremely helpful for workers with disabilities, beneficiaries with long-term employment can face a number of challenges. For example, the ridiculously low SSI asset test of $2,000—which has not budged in nearly three decades—is an ongoing struggle. The asset limit may not be a problem for some beneficiaries without work who are living on an SSI benefit of $733 per month. However, if you’re making $50,000 a year, the asset test means having to spend what you earn each and every month and never being able to save for the future. Some might say that workers with disabilities who can earn $50,000 shouldn’t remain eligible for SSI and Medicaid. However, if you have $60,000 worth of healthcare costs, you couldn’t survive—and couldn’t work—without access to the long-term care these vital programs provide.

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Workers with disabilities whose earnings exceed their threshold limit face challenges as well. Take Jenny. At the age of 16, she suffered a spinal cord injury in a skiing accident that resulted in quadriplegia.  She went on to college and has worked as a teacher in California since graduating. Jenny is a shining example of a person who has been able to thrive under SSI’s system of work incentives. However, after many years as a teacher, Jenny’s annual salary increases pushed her above her individualized threshold, and she was recently informed that she is no longer eligible for SSI and the Medicaid that comes with it. Jenny thus faces a catch-22: California’s school system does not allow Jenny to reduce her hours unless she works a two-thirds time position, which wouldn’t give her enough income to continue to pay her monthly bills and survive. But she also doesn’t earn enough to pay for her long-term supports and services out of pocket if she loses her Medicaid coverage. Don’t we as a society want Jenny to thrive as a teacher educating our children and also be able to get the care she needs in order to work and live?

Medicaid Buy-In Programs

Medicaid Buy-In (MBI) programs were established to address this challenge. They enable workers with disabilities like Jenny to “buy into” Medicaid by paying a premium.

Nearly every state has established an MBI program, each with its own financial eligibility requirements. While these programs enable many workers with disabilities to climb the economic ladder without losing access to the long-term care they need, many have income limits that are too low to help workers like Jenny. For example, California’s MBI program has a net income cap of 250% of the federal poverty level—far below Jenny’s current income. Only 15 states have programs with higher income limits than California’s, including three that have no income cap at all.

In addition to raising the earnings cap on eligibility for long-term care through Medicaid, we also need to address the problem of portability. As states’ MBI eligibility criteria vary widely, eligibility for one state’s program doesn’t guarantee eligibility for another in the event of a move. What we really need is a national Medicaid buy-in program that allows workers with disabilities to continue to climb the economic ladder and seek job opportunities without fear that they will lose the long-term care they need in order to work.

Out of Options Post-Employment

Longer term, Jenny will face a challenge that many workers with disabilities confront when employment stops due to retirement or a medical setback. This is because the Medicaid work incentive policies that allow some of a worker’s income to be disregarded for Medicaid long-term care eligibility do not apply to “unearned income” such as SSI benefits, annuities, or short- or long-term disability payments. While policies vary across states, this can be devastating for people suddenly living on a fixed income, who then face requirements to “spend down” a significant portion of that income on medical costs in order to maintain their eligibility for long-term care, leaving them with insufficient income to live on.

This is the future that lies ahead for many successful workers with disabilities. The federal government spends billions of dollars to help persons with disabilities return to work—but this misguided policy effectively requires you to work until you die, or to live in abject poverty in order to maintain access to the long-term care you need in order to live. This half-empty cup continues to impede progress toward the ADA’s vision of economic conclusion and participation in society.

Long-term, we should work together to establish a social insurance program that ensures access to long-term care. In the meantime, Congress should enable MBI participants to retain their access to Medicaid long-term services and supports despite medical setback or retirement. And it should eliminate or significantly raise the 1619(b) asset limits—and the SSI asset limits generally—so that workers with disabilities may save and plan for a modest retirement. Twenty-five years after the passage of the ADA, these measures would finally provide workers with disabilities like Jenny and I the opportunity to achieve the full American Dream.

Throughout its history, Medicare has been effective at reducing poverty for older people and people with disabilities, and at increasing access to health care. In the program’s very first year, more than 19 million people over age 65 enrolled; access to care increased by one-third; poverty among older and disabled Americans decreased by nearly two-thirds; and personal economic security increased for older people and their families.

As Congresswoman Rosa DeLauro said, “Medicare is a bedrock part of the American social insurance system.” It has provided peace of mind for millions of Americans, who know they will have reliable health care coverage in retirement. The program covers people most in need of care—people who often wouldn’t be covered by private insurers or couldn’t afford such insurance. It also strengthens families by limiting the financial burden of health care costs for their older and disabled relatives.

Many people are unaware that Medicare has also helped change our society. For example, its creation was a huge boost for civil rights. Any hospital wishing to collect Medicare funds had to desegregate to qualify for payments. As a result, thousands of hospitals fully desegregated in only four months.

Medicare has seen many positive changes.  It added hospice coverage in 1982 and now almost half of beneficiaries who die use this important benefit. In 2008, Medicare coverage of mental health services changed, so that these services were reimbursed at the same rates as other Medicare-covered services delivered in the same care settings. As a result, hospital care for mental health services no longer costs more than hospital care for a physical health problem.

In 2010, the Affordable Care Act added a decade of economic security to the Medicare Trust Fund, increased free preventive services, and increased parity between traditional Medicare and private Medicare plans.

A recent “improvement” came about as a result of work by the Center for Medicare Advocacy – where I serve as the Executive Director – and by our partners at Vermont Legal Aid. When Medicare beneficiaries have a chronic condition, such as Alzheimer’s or Multiple Sclerosis, they often need skilled care in order to maintain their condition or slow deterioration. Medicare regularly denied such coverage because the beneficiaries weren’t “improving.” This harmful practice impeded access to necessary care and placed an unfair burden on families who were forced to pay for these services. As a result of a 2012 settlement with the Centers for Medicare & Medicaid Services, coverage for skilled care can no longer be denied simply because an individual isn’t improving. Coverage is available for skilled care to maintain an individual’s condition.

Despite Medicare’s success, it faces threats like never before. From privatization to coverage denials, to political pressure that would limit coverage and increase costs for beneficiaries in the future. However the Center for Medicare Advocacy is advocating for a number of common sense solutions that would better protect beneficiaries and help improve Medicare’s financial security, without cutting benefits or coverage. These include:

• Paying Medicare Advantage at the same rates as traditional Medicare. Private plans should not be paid more than traditional Medicare. This would save more than $132 billion dollars over 10 years;
• Adding a prescription drug benefit to traditional Medicare;
• Requiring Medicare to obtain the best prices for prescription drugs — — which would save more than $141 billion over 10 years;
• Fixing the broken Medicare appeals system by eliminating one of the first levels of review. The vast majority of reviews at the initial and second levels are “rubber stamp” denials which simply add bureaucracy and waste money. This would save around $100 million per year in operating costs.

Medicare works well for the American people and it has for 50 years. Let’s ensure that it stays strong and continues to open doors to health insurance and health care for our nation’s most vulnerable people and their families.