Safety Net

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.

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Safety Net

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.

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Media and Politics

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.

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Media and Politics

Trump’s Child Care Plan Will Make It More Affordable—For the Wealthy

Last night, during his joint address to Congress, President Trump promised to “work with members of both parties to make child care accessible and affordable.” This isn’t a huge surprise: for the past several months, Ivanka Trump has been meeting with Republican representatives on Capitol Hill about a child care proposal. When Ivanka—alongside her father—introduced the plan back in September 2016, she asserted that “safe, affordable, high-quality child care should not be the luxury of a fortunate few.”

But the reality is, Trump’s proposal is essentially a tax break for the wealthy disguised as a child care plan.

There is a real child care crisis in the United States. The current system doesn’t work for anyone: Parents are shelling out more for child care than they’ll need to pay for in-state college tuition, and providers are still closing their doors due to lack of funding. Low-income and middle class families need help affording quality child care, but the Trumps have something different in mind.

Here are five reasons why Trump’s child care plan doesn’t cut it:

1. It provides the biggest benefit to wealthy people

The Trump child care plan was written by Ivanka, for Ivanka. It’s centered around a tax deduction, which would let families earning up to $500,000 per year deduct their child care costs from their taxable income up to the average cost of child care in the state.

Unlike a refundable tax credit, which would give money to anyone who is eligible, a tax deduction lowers peoples’ taxable income and increases their tax refund at the end of the year. That benefits high-earners more than lower and middle-income families—under Trump’s plan, 70 percent of benefits would go to families earning at least $100,000.

2. It doesn’t help people when they actually need it

Under Trump’s plan, families would need to pay upfront for child care each week or month, and then wait until tax season to get a small deduction. Most families don’t have that kind of liquid income—a parent working full time at a minimum wage job would have to spend anywhere from 62.9 percent of their income (if they live in South Dakota) to 183.5 percent of their income (if they live in Washington D.C.) to pay for child care for an infant and a four year old.

If Trump was serious about helping middle class Americans, his proposal would provide support for families throughout the year, when they need it. For example, proposals for a High-Quality Child Care Tax Credit—where a family would contribute between 2 and 12 percent of its income on a sliding scale—would advance money to families on a monthly basis so that they would never need to pay full price out of pocket.

3. It won’t improve child care quality

Providing high-quality child care is expensive. Around 60 percent of funding for child care providers comes directly from parents, so providers depend largely on tuition to cover the cost of staff salaries, classroom materials, and building maintenance. So, high-quality providers tend to have higher tuition prices. That creates a gap in the type of care kids ultimately get—children whose parents have money get high-quality care, and kids whose parents don’t settle for less.

Trump’s plan doesn’t address the fact that access to high-quality early childhood education depends on a family’s income. That perpetuates the achievement gap that plagues students later on. Without access to high-quality early childhood education, low-income students and children of color start kindergarten behind their peers in math and reading. They struggle to make up the difference later on.

4. It won’t create more child care options

Many parents have trouble even finding a licensed child care provider in their community. A recent study found that across eight states, 42 percent of children live in child care deserts where child care supply does not meet demand. The problem is particularly pronounced in rural areas, where the majority of children—55 percent—live in child care deserts.

Trump’s plan doesn’t create incentives for new providers to enter the child care market, which would increase the availability of child care for families. A meager tax deduction is not enough to build a child care infrastructure, especially in rural areas where there is the greatest need for child care.

5. It doesn’t support the early childhood workforce

Trump’s plan does not even mention the 2 million—mostly female—early childhood educators that care for the nation’s youngest children every day. The median annual salary for child care workers is just $20,320, which is less than the median for animal caretakers and parking lot attendants. Almost half of child care workers rely on some form of public assistance, and they often lack basic benefits like health insurance. That has consequences for the children in their care.

Early childhood is a critical period when children grow, learn, and develop rapidly. In order to thrive, children need careful attention from adults that make eye contact, engage in dialogue using age-appropriate language, and respond to their expressions of emotion. High levels of stress—like the kind caused by economic insecurityinterfere with an educator’s ability to give a child the meaningful attention that they require throughout the day.

Last night we heard President Trump say that he wants to help financially-strapped families, but families cannot work unless they have affordable child care. Trump’s child care proposal won’t meet most families’ needs—it’s little more than a tax windfall for wealthy people like him. If he understood the child care crisis that low-income and middle class families face each day, he’d put forward a complete plan that addresses child care affordability, quality, and access.

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Safety Net

I Went from Being Homeless to a Full-Time Writer. Trump Wants to End the Programs That Got Me Here.

Six years ago, I lived with my then 3-year-old daughter, Mia, in a studio apartment. During the day I worked full-time as a maid, cleaning the houses of wealthy people. At night, I stayed up completing coursework for online college classes.

It got so cold that winter that my daughter and I slept in the living room, because I couldn’t afford to heat the entire apartment. So instead we kept the doors to the room closed tight, and huddled together on the small pull-out couch I’d found for free.

It snowed quite a bit—more than my 1983 Honda Civic could handle. For an entire week, I tried to will the snow plows to come down the steep little alley where we lived. Every day that I missed work meant another bill I wouldn’t be able to pay: first electric, then rent.

I was in this situation because, two years earlier, I fled from my daughter’s father after he punched out a window in our home in the middle of January. He’d left, then called to say he wanted to return with the landlord (who’d always been a source of fuel for his anger) to fix it. I called the police for safety.

With that decision, I found myself homeless with a 6-month-old. I worked as a landscaper while we moved from a homeless shelter, to transitional housing, and finally to our own apartment. We couldn’t have made it out of the shelter without help from an elusive grant called Tenant-Based Rental Assistance, which helped close the gap between what we could afford and what an apartment actually cost.

Eventually, I found a full-time job that also allowed me to go to school full-time. But the job only paid $8 an hour—not enough to provide for a family. Even working full-time, we had to go without basics. I had to budget for when I could purchase a new sponge or paper towels. I needed food stamps to help feed myself and my daughter, because, after paying rent, gas, and utilities, most months I only had 50 dollars left for things like toilet paper, soap, and tampons.

At the end of that winter, I got money back from the Earned Income Tax Credit and the Child Tax Credit. I was able to buy tooth brushes, curtains, a desk to do homework on, blankets, and a bed I still sleep on today. I bought a heated mattress pad, so I didn’t have to heat the whole apartment at night. My daughter Mia and I went to sleep at night, cozy and warm, but I still lived in a fog of hopelessness, anxiety, and doubt.

I didn’t have a family who could financially or even emotionally support me. My daughter’s father still tried to cut me down every chance he could. I worked my way through school, but I couldn’t have done that if I hadn’t had help meeting basic living standards. Food stamps, rental assistance, and tax credits were the things that kept us afloat. I received utility assistance, and sometimes a voucher for gas so I could get to work. I used WIC (Women, Infants and Children) coupons for milk, bread, eggs, and peanut butter, which became the staples of our diet.

A month after I graduated college, I gave birth to a second little girl. Eventually we were able to move into safe and secure housing I could afford, and it meant I could focus on my chosen career as a writer. Within eighteen months, I’d published pieces in The New York Times, The Guardian, The Washington Post, and secured a book deal with Hachette Books after an essay at Vox about my years working as a maid went viral.

Now all of the programs that helped me and my daughter get ahead are under attack.

These plans would just kick people when they are already down.

The ACA repeal would roll back access to Medicaid, and federal funds for child care, food stamps, rental assistance, and more face the chopping block. They’re at the mercy of an administration and conservative politicians who don’t have to worry about what would happen if they worked full-time and still didn’t have enough to give their children the basics in life.

These plans would just kick people when they are already down. We need good quality food, not whatever has the most calories at the cheapest price. We need regular check-ups and to be able to afford prescription medications. We need treatment for our backs that ache from long hours working jobs that no one else wants to do—like scrubbing your floors, or caring for an elderly person you love. These are jobs that are vital to keep our society running smoothly.

Maybe folks like Donald Trump and Paul Ryan need to work one of those jobs. Maybe they need to stand out in the cold of December, ringing a bell in a Santa suit. Maybe they need to go home to an unheated house with bare cupboards, still hungry from their one meal a day at the soup kitchen. They need to go home to children who won’t have dinner. Children who had to sit in an office during recess because their family couldn’t afford to get them a coat that year.

Maybe Donald Trump and Paul Ryan need to spend a night on a pull-out couch, snuggled up next to their children for warmth, only to wake up the next day and do it all over again.

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