HHS Secretary Tom Price Invited Governors to Gut Medicaid Protections

As House Republicans deliberate over their efforts to ram through a repeal of the Affordable Care Act that slashes $880 billion from Medicaid, one might be forgiven for believing that the only threat to the health care of low-income Americans and people with disabilities is coming from Congress.

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.

Price and Verma assert that “rigid and outdated implementation and interpretation of federal rules” hinder the Medicaid program from accomplishing its goals.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 make it possible for states to enact damaging policies

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.

Their letter places individuals with disabilities at greater risk of warehousing

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.


First Person

Trump Romanticizes the White America of the Past. It’s Time to Stop.

I’ve been reading a lot about how many of the people who ushered in the Trump era were driven by a longing for a white Christian America of the past. They harken back to a heyday when white men were the power brokers in all situations, women stayed home, and America was a stratified society where everyone knew their place.

These folks hope the new president will bring us back to this romanticized vision: the U.S. as Mayberry, the small town from the The Andy Griffith Show that has become synonymous with an idealized, folksy life.

The problem is, that America never actually existed.

At least not for my family, living in segregated Chicago in the 1940s—around the time when The Andy Griffith Show was set.  My grandparents lived in public housing. Other housing options weren’t available to them because back then, black people couldn’t just move into any home or neighborhood they wanted.

Their parents—my great-grandparents—had come north to the promised land of Chicago to escape racial violence in the South, only to find that black folks couldn’t escape America’s racist purgatory. My grandmother was born a month after the 1919 race riots in Chicago, which started when a black swimmer crossed the “invisible” color line at the 31st Street beach. My great-grandmother, eight months pregnant at the time, had to run home to escape the angry white mob—tripping and falling on her stomach heavy with my grandma inside.

Such were the experiences of oppression, violence, segregation, and opportunities denied that were passed down to my grandparents.

It’s time we see our history for what it is.

My grandmother and grandfather were janitors. In fact, three of my four grandparents were janitors. When they first started working, jobs didn’t have benefits like pensions and health care. But there was a key development in their lives that would impact my family for generations to come–they joined a union. My janitor grandparents were members of the Janitors’ Union, SEIU Local 1, at a time when racial exclusion from the labor movement was too often the norm.

Those good-paying union jobs helped my grandparents save money and buy a home on the South Side. When they bought their house in 1954, they were the third black family on a block made up of working-class Irish and Italian families. By 1960, the entire block was black.

White flight was in full swing, because white families thought the presence of black families would cause property values to plummet. The result, almost 60 years later, is segregation that still isolates my community from good jobs, good schools, and the hope for something better.

Still, those good union jobs helped my grandparents send the first person in our family to college–my mother. In 1950s America, a smart black woman had only two options: nursing school or teacher’s college. My mom chose to become a teacher, and taught in public school for more than 40 years.

It was that union job as a teacher that allowed my mother—a single parent, in a working-class neighborhood, on the South Side of Chicago—to raise two boys and have economic opportunities not available to other black men and women of her generation.

Yet as any measure will show, the opportunities for most black Americans were—and still are—much more limited compared to opportunities for whites.

If you doubt that, consider my family today. My grandparents passed down the house they bought in 1954. My mother raised my brother and me there, and my brother and his wife are now raising my 20-month-old nephew there. This past fall, they had to temporarily move out of the house because my nephew had dangerously high levels of lead from the paint and windows in the house. I imagine white families with the income to remediate the lead in aging homes never have to worry about this.

The neighborhood remains segregated, and suffers from the toxic inequality that plagues many black communities today.

That’s the kind of inequality, racial segregation, and seclusion that so many of our fellow Americans want to remain steeped in. So far, the new president has tried to ban immigrants from several Muslim-majority countries from entering the U.S.; is now trying to take away health care away from millions of Americans; and is preparing to shred the safety net that protects working people and their families when work doesn’t pay enough or they fall on hard times. Trump and Congressional Republicans are also set on destroying the very union jobs that gave families like mine a chance.

We’ve made so much progress, and still have so far to go. It’s time we see our history for what it is, and leave those romanticized notions of Mayberry where they belong—in the past.


First Person

The House Republican Plan for Medicaid Would Put My Daughter’s Life At Risk

My daughter, Caroline, is seven years old. She is funny and smart and obsessed with Disney princess movies and loves books about dinosaurs. Caroline also has Rett syndrome, a neurological disorder that interferes with her ability to control her body. She can’t talk, walk, or use her hands.

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.

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 helps cover the cost of co-pays, treatments, medical equipment, and other expenses that our insurance doesn’t cover. Those out of pocket costs usually add up to about a couple thousand dollars a month. Without Medicaid, we wouldn’t be able to afford the hospital-grade equipment Caroline needs—like the cough assist machine, the nebulizer, the oxygen supplies, and the nursing staff. She used to spend several weeks in the intensive care unit almost every time she caught a cold. But because of Medicaid, and the medical equipment it helps cover, she only had one hospital visit last year.

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.


First Person

For Chronically Ill People Like Me, the ACA Repeal Is Life Or Death

I haven’t been able to get out of bed on my own in nearly two years—and I’m only 28 years old.

For more than a year I was unable to speak, sit up, or eat solid food. In June 2015, first responders wheeled me into the emergency room, too weak to eat, drink, or elevate my head. I had been, essentially, waiting to die of dehydration. Besides administering some much-needed fluids, doctors offered little help.

I have among the most severe cases of chronic fatigue syndrome (sometimes known as myalgic encephalomyelitis, or ME). It’s a devastating multi-system disease that’s been given a patronizing name. The cause is still unknown, which makes getting a proper diagnosis—often necessary for insurance and disability coverage—near impossible.

When I was released from the hospital in 2015, my family learned that California’s state-administered Medicaid health care program, Medi-Cal, would not cover the ambulance ride to transport me home because none of my conditions were considered “legitimate.” I took the ambulance anyway, and paid around $1,500 for the ride out-of-pocket.

Several months later, I became so dehydrated that my family decided to pay more than $150 a day for a nurse to come to our house to administer intravenous saline to keep me alive. Large doses of intravenous saline were, and still are, the only way to keep my body functioning.

My medical care has become a privilege that costs me more than $1,200 a month. In the last year, I spent roughly $73,000 on my health care—more than double my annual income when I was healthy and working full-time.

In the last year, I spent roughly $73,000 on my health care

Historically, the National Institutes of Health (NIH), has allotted only a paltry amount of attention and funding—$6 million—to ME research. Some headway has been made in recent years, at least in part because advocacy through the #MillionsMissing campaign has brought the lack of funding to legislators’ attention. In November 2016, the NIH tentatively announced plans to increase research funding for ME to roughly $15 million for fiscal year 2017. But now, with Republicans controlling both Congress and the White House, there has been a change in what was promised. In January the NIH said it will actually decrease funding, allotting $1 million less than in 2016.

The amount is minuscule compared to the funds that the government has at its disposal. The ME community has needed a substantial increase in government funding for decades. More funding would mean more research; more research would mean more biomarkers; and more biomarkers would mean the potential for a diagnostic test. These scientific breakthroughs would mean medical professionals would be able to better understand the disease—and therein lies the solution. This path has potential for the medical establishment and government to compensate for decades of belittling patients who suffer from a devastating disease, finally bringing widespread legitimacy to ME—and relief to millions of patients. That would be real progress.

But it may never happen at all.

Before Donald Trump shocked the world by winning the election, I was hopeful that the Affordable Care Act (ACA) would, in time, be expanded so that more of my medical needs would be covered by insurance. But now, barring a radical turn of events, that seems—at best—highly unlikely.

If the Trump Administration repeals the ACA, even simple treatments—like saline infusions and in-home nurse and doctor visits—will cost egregious amounts of money. My savings account has been zeroed-out, and I receive less than $900 in monthly disability checks. For the past year, my medical expenses alone have been more than $6,000 a month.

The plans that have been floated to replace the ACA do little for people with disabilities or low incomes. A replacement would likely offer a flat credit based on age, and it wouldn’t cover the care I need.  It would also dramatically weaken Medicaid, decimating services for people with disabilities and serious illnesses.

It would be unfair to say that the ACA has no room for improvement. But for me—and I imagine for most poor, chronically ill people—it is something to build on, not something to dismantle.

Because what happens next, for us, could be a matter of life or death.



How “Family Values” Conservatives Are Hurting Families

To Lorena Barrientos, the idea that politicians would reduce women’s access to contraception is baffling.

“Do they understand if they cut that off that lots more people are going to be pregnant?” she said.

Barrientos, a 28-year-old woman who I met near her home in New Hampshire, had serious complications when she was pregnant. Her daughter, who’s almost three now, was born three months early. Her doctor has told her that if she gets pregnant again, she’ll have to be on bed rest for the whole nine months. Even so, the pregnancy would still be risky. So, although she wishes she could have another child someday, she uses an IUD to make sure it doesn’t happen—not just for her own sake, but for her daughter’s.

“You can’t be in bed for nine months with a little one,” she said.

Barrientos said she used to work as a pharmacy tech and a line cook, but chronic health problems forced her to quit. She gets her health insurance through Medicaid, which pays the full cost of long-term birth control.

If she had to pay out of pocket, she said, there’s no way she could afford the IUD—it has an upfront cost of around $1,000.

“By the time I pay my bills and my rent, I’m broke,” she said.

This year, Congress is pursuing an array of plans that would reduce access to family planning resources. Repealing the Affordable Care Act could mean employers no longer have to offer plans that cover contraceptives, and defunding Planned Parenthood would eliminate the only place to find free and low-cost family planning in many communities. And for women like Barrientos, a rollback of the Medicaid expansion—and transformation of the entire program into state block grants—would endanger access to all sorts of care.

Lydia Mitts, senior policy analyst with the health care advocacy group Families USA, said that before the ACA millions of women struggled to afford birth control. Many had to pay the entire cost out of pocket, and copays were a struggle for people living paycheck to paycheck before the mandate required insurers to cover the full cost.

“It was a win for women’s healthcare, but it was also a win for families and women’s ability to plan when they want to start a family,” Mitts said. “I think everyone wants to be empowered to make those big life decisions and kind of pursue their dreams at the pace that makes sense for them and their spouse and their children.”

Empirical evidence backs up what most parents—and people who aren’t yet ready to become parents—are well aware of.

Empirical evidence backs up what most parents—and people who aren’t yet ready to become parents—are well aware of: Being able to choose when to have kids leads to healthier families. Kids and their parents are physically and mentally better off, and families are more stable financially. Researchers found that children born in areas with federally-funded reproductive health care clinics were 4.2 percent less likely to live in poverty as children and 2.4 percent less likely to experience poverty as adults.

The current leaders in Congress argue that their policies, which rely heavily on a free-market approach, empower families to make their own decisions free of government coercion. But the ACA mandates and Medicaid expansion, along with providers like Planned Parenthood, are giving women long-term contraception options that used to be hard to come by. Data from states like Texas show what happens when those services are cut—the state has seen a 36 percent decline in the use of long-acting contraceptive methods, a rising birth rate, and an uptick in maternal mortality.

In a particularly distressing twist, the same policy changes that would reduce access to birth control would also make it harder to receive prenatal care. The U.S. Department of Health and Human services has found that, before the ACA, 62 percent of individual market enrollees didn’t have coverage for maternity care. Many women also lacked insurance altogether, putting them at much greater risk for serious health problems during pregnancy.

“It’s challenging to listen to discussion about eroding women’s access to birth control at the same time as eroding their access to care if they end up pregnant,” Mitts said. “We want to make sure women have the reproductive care they need, and then health care they need to have a healthy family, have a healthy baby.”

That seems like common sense to a lot of people. Just a few blocks away from Lorena Barrientos’s home, I ran into Michele Dumont. She recalled going to Planned Parenthood back in the 1980s to get her birth control pills and braving a line of protestors who were angry that the clinic also offered abortions.

“I already had two children in diapers, and I definitely didn’t want a third in diapers,” she said.

Dumont said her children are grown now, but she thinks a lot about people she knows who could be hurt if their family planning options disappeared.

“Believe me, they would not want to see me in Congress,” she said.

Correction: This article originally stated that Barrientos’s daughter was born three weeks premature. She was born three months premature.