In 2017, Congress placed a target squarely on Medicaid’s back. Republican leaders pushed to cut hundreds of billions of dollars from the health care program, while Democrats, and some Republicans, defended it as critical to the nation’s most vulnerable families.
Medicaid’s fate remains up in the air, to be determined by looming budget battles, and perhaps even the 2018 midterm elections.
Today, Medicaid ranks among the federal government’s largest commitments to the nation’s families, a complex and sometimes misunderstood joint venture between the federal and state governments on which 1 in 5 Americans relies for health care coverage, according to The Henry J. Kaiser Family Foundation.
Medicaid was created 50 years ago with a smaller mission: to cover the nation’s neediest residents, largely those on public assistance. Over the years, it expanded to include people with disabilities and many pregnant women and children – it now covers nearly 40 percent of kids and 45 percent of births, according to Kaiser Health News. In 2010 the Affordable Care Act allowed states to increase eligibility to individuals who earn 138 percent or less than the federal poverty line.
Over the years, Medicaid became a net that could catch those falling into widening gaps in a U.S. health care system where costs were rising as the percentage of workers with employer-provided coverage was falling, according to Elise Gould, a senior economist at the Economic Policy Institute. By 2015, only 23 percent of those at the bottom of the pay scale had insurance through their employers.
Today, Medicaid covers a wide swath of Americans, ranging from low-wage workers to grandparents.
“Not only is it a health insurance program, it is our largest health insurance program,” said Eliot Fishman, senior director of health policy at Families USA, a Washington, D.C. based health care advocacy group. “People from all different walks of life…depend on the Medicaid program.”
In what could be the greatest reduction in the social safety net in decades, Republicans now want to reshape Medicaid. In October, Congress passed a budget blueprint that proposes cutting Medicaid spending by roughly $1 trillion over 10 years, echoing the Trump administration’s budget, which would cut more than $800 billion in projected spending on the program over the same period.
With Medicaid on the chopping block, understanding who the modern program serves matters more than ever. To gain a clearer picture, Marguerite Casey Foundation’s Equal Voice News traveled to Southern California to talk with people who use Medicaid – warehouse workers, millennials, an auto technician, and families who are white, Black, and Latino. We listened as they explained how a program born during the 1965 War on Poverty became an integral part of their lives.
On a sun-soaked deck overlooking Los Angeles, we met with millennial and former freelance writer Haley Potiker. Twenty-three miles away, we talked with Bruce Jefferson as he prepared to unload shipping crates at the Port of Los Angeles. A few hours down Interstate 5, we met the Donners in a middle-class beach community, grappling with fallout from a catastrophic medical crisis after decades in the workforce.
The bond that connects these families – separated by race, income, and neighborhood – is their reliance on Medicaid at one point or another in their lives. These are the families with the greatest stake in the battle over how, or if, the health care program is resized and reshaped.
New Economy Workers Find Health Care Out of Reach
Work: Warehouse tire chocker
LONG BEACH, Calif. – Every morning Bruce Jefferson arrives for work in the darkness of 4:45 a.m., joining hundreds of men walking down trails from the highway above, riding buses, or driving into the bowels of the Port of Los Angeles. They gather outside the gates of a single warehouse, where they will spend the day unloading shipping crates at the nation’s busiest port.
Jefferson and his coworkers represent another side of the new economy. While Haley Potiker is an example of millennial freelancers who feed the nation’s media brands, Jefferson belongs to an army of lower-wage workers that keeps online shopping goods flowing – an army that often can’t afford private health care coverage.
Despite their central role in the supply chain of today’s retail industry – they move televisions, microwaves, tools, clothes, toys, even Christmas trees for online retailers and others – these workers typically earn minimum wage or a little more.
After two decades working in warehouses around Southern California, first as a lumper unloading shipping crates and now as a tire chocker securing the wheels of those crates, Jefferson, 57, earns just $12 an hour. He relies on Medicaid for his health care coverage.
There is “no way I am affording health care,” Jefferson said as he drank coffee from a portable mug and smoked a cigarette outside the warehouse on an unseasonably hot October day where temperatures would rise above 100 degrees. His current employer, a temporary staffing agency, offers a health care plan, but Jefferson says he can’t pay the premiums on the $17,000 a year he takes home working full time on an unpredictable schedule.
The Venice Beach native has relied on California’s Medicaid program, Medi-Cal, for the last eight years. He is far from alone. In 2014, 23 percent of low-income workers like Jefferson relied on Medicaid or other public health care coverage, according to The Kaiser Family Foundation.
“Those of us who are living paycheck to paycheck really need it,” Jefferson said as he waited to start work. “I believe they are trying to cut it to save money. Money shouldn’t be the issue. It should be about a person’s health.”
At the Port of Los Angeles, Jefferson is engaged in improving warehouse work that leaves many with few coverage options beyond Medicaid. He and other workers have joined forces with the Warehouse Worker Resource Center and the Teamsters union to demand permanent jobs, safe conditions, the right to organize under a union, and a living wage, which could allow them to afford health care coverage.
Today, Jefferson doesn’t really have a choice.
“It’s either (health care) or the rent,” he said.
Millennials Can’t Have It All, a Career Without Health Care
Work: Writer, communications specialist, record label manager
LOS ANGELES – Haley Potiker was a rising media star as recently as last year, writing for Vice News and Cosmopolitan, moonlighting as general manager of a hip-hop record label, and building a career in the nation’s entertainment capital, Los Angeles.
As a member of the expanding on-demand workforce, Potiker wrote news stories and music profiles from her rooftop deck in LA’s hip Silver Lake neighborhood, with a view of downtown and the iconic Hollywood sign in the background.
But, there was another side to her burgeoning career in the new economy. As a freelance journalist, Potiker earned recognition, but not health insurance. Instead, she remained on her parents’ health care plan until she turned 26, when she was, by law, kicked off.
Even though Potiker worked two jobs – as a writer and label manager – and often logged 10 to 12 hours a day, she only earned about $25,000 a year heading into her late 20s in one of the nation’s most expensive cities. After she lost her parents’ coverage and began shopping for private health insurance she realized she couldn’t afford the $200 monthly premium.
Then one day a 3-inch-thick packet from a Los Angeles-based Medicaid program arrived at Potiker’s apartment, informing the more-than-fully-employed writer and manager she was eligible for the program.
“I put my health care on a credit card for four months until the Medi-Cal packet came along and saved me,” Potiker recalled. “I knew my pay was too unpredictable to put it on a debit card.”
Raised in the wealthy Orange County enclave of Villa Park and a graduate of Occidental College, Potiker never expected to need government help to cover her health care costs. But today, 41 percent of Medicaid enrollees have university degrees or some college experience, Kaiser Health News found.
Potiker was enrolled in Medicaid for two years, until she landed a job at the Los Angeles Alliance for a New Economy (LAANE) that provided a generous slate of benefits, including health care coverage.
Today, Medicaid covers streams of people like Potiker, who are doing well professionally but still fall through gaps in the U.S. health care system. In the gig economy, even the most successful often lack access to employer-provided health coverage. Roughly 60 percent of working-age adults using Medicaid have jobs (not including those with a qualifying disability), according to an issue brief from The Henry J. Kaiser Family Foundation. A little more than half of those working adults work full time, and 8 out of 10 are in a family where there is at least one worker, according to the foundation.
The number of uninsured workers could grow in coming years as the gig economy, which creates many flexible jobs that rarely come with the benefits of old-economy jobs, continues to expand, fueled partly by a freelancer-reliant online media. This growth, in turn, could expand the ranks of Medicaid.
“It’s unsustainable,” Potiker said. “It’s just really depressing.”
Potiker sees this unsustainable model all around LA, where she runs into yoga instructors, musicians, and fellow writers who, she’s certain, rely on Medicaid for their health care coverage.
Now Potiker is trying to change this model in her role as a communications specialist at LAANE, which works for better jobs and healthier communities. One of her projects is working on the Fair Work Week Los Angeles campaign, which encourages retailers to offer full-time jobs with stable schedules – and health care coverage.
Medical Disaster Pushes Family Out of Work and On Medicaid
Work: Former automotive electrical technician
CHULA VISTA, Calif. – Philip Donner spent 37 years firmly in the nation’s workforce until one day he wasn’t, pushed out, and onto Medicaid, by a series of medical catastrophes.
It all began one summer day three years ago, when the award-winning automotive technician thought he was coming down with a stomach flu. It turned out to be a combination of diverticulitis with perforations and an autoimmune disease, and it nearly killed him.
Donner spent the next three months fighting for his life, enduring multiple operations and more than four weeks in a coma. He went into cardiac arrest five separate times.
Three months later, Donner says, his best friend from work visited him in the intensive care unit and told him his manager wanted to talk with him. He learned he would not only lose his job, but his health insurance would stop at the end of the month, even though his condition was only beginning to stabilize, and his medical issues could last the rest of his life.
Over the next six months, Donner moved from the world of private health insurance into California’s Medicaid program, Medi-Cal. But, it wasn’t easy. First, no one told him his new health insurer dropped him five months after he left the hospital. He waited another two months to join Medi-Cal, and even then only succeeded after an advocate from San Diego’s Legal Aid Society intervened.
Finally, Medi-Cal began covering key medical expenses, even for the last two months Donner didn’t have coverage, including medications that cost thousands of dollars a month that Donner now had no way to pay for. Since he needed help with many daily tasks, including getting dressed and showering, neither he nor his wife Lori could work, which meant they qualified for Medicaid.
Medicaid “was our lifeline. Because if we didn’t have that he couldn’t stay alive,” Lori Donner recalled. “If they cut all of (these) programs from Medicaid, what are we going to do? Are we going to all die? Because there is no other program that (is) going to pick it up.”
Today, Donner, now 63, relies on a patchwork of Medicaid and Medicare, the federal health care program for older Americans, for coverage. Each month, Medicaid alone covers Donner’s heart medicine, for a condition diagnosed during his illness, deductibles for doctors’ visits, home-care medical supplies and other costs.
“I am saying about $5,200 a month he would have to pay out of pocket if Medi-Cal, Medicaid, wasn’t there,” Lori Donner said. “That is what they would try to stick us with. He would be dead, because we wouldn’t have been able afford that by then.”
Fifty years ago, Medicaid was created largely to cover welfare recipients. Today it often acts like the nets slung below acrobats, catching families that fall. It catches workers like Philip Donner, who are blindsided by a medical catastrophe that robs them temporarily or permanently of the ability to work.
As Congress debates ways to reshape and cut future spending on health care coverage that is often a last resort for families, Philip Donner wonders why.
“It’s ridiculous to cut us first. They always go after the things that will make people cry. They screw the vets. They screw the people who need that help,” Donner said.
Donner understands Medicaid is far from perfect – he has seen its flaws, such as all of the red tape and lack of information, up close – and that it needs a lot of work.
But “it’s a good aid when you need it,” Donner added. “The government helps finance that little drop in the bucket that keeps a lot of people alive.”
Medicaid Brings Stability to a Family Living with Disability
Eli Gelardin, Christina Mills, Olivia, and Sage
Ages: 39, 40, 4, and 3
By Eli Gelardin
SAN FRANCISCO BAY AREA – Olivia Donna Gelardin was exquisite. At almost 5 years old she was delighted to watch sunlight reflect off a window, feel sand run through her fingers in her garden, or splash soapy water in the bathtub with her brother.
Livy, as we called her, was our first, our dream-come-true baby, our patient teacher.
Livy also was born with Schizencephaly, a rare neurodevelopmental disability characterized by global delays in gross and fine motor skills, cognitive functioning and speech.
Initially, her diagnosis made us anxious. My wife and I have physical disabilities and understood how to advocate for our own needs, but our daughter’s reality was somewhat unfamiliar ground. Mostly, we feared that her intellectual disability would exclude her from play, learning and relationships with her peers. We sought every opportunity to help our little girl thrive. With the support of early intervention, intensive therapeutic supports, state-funded services, love, and family and, most of all, Livy’s extremely hard work, she blossomed.
For the first three years of Livy’s life, we paid out of pocket for all health care, private therapy and in-home support service costs beyond what our insurance would pay. The costs exceeded $35,000 annually. Though we are privileged to be a dual-income household with a mortgage and modest assets, expenses quickly snowballed.
We slashed our family budget and refinanced our home, but were sliding quickly into debt. Then came a lifeline: Livy reached an age where she qualified for Medicaid services.
Specifically, Livy was eligible for the Institutional Deeming program, a Home and Community-based services waiver designed for children with developmental disabilities. Kids can qualify irrespective of their parents’ income, an especially important rule given that the cost of needed services can easily eclipse health insurance coverage limits.
This Medicaid-funded program changed our little girl’s life. Livy was now covered for weekly physical, occupational and speech therapy, visits to doctors (neurology, orthopedic, multiple specialty care and primary care physicians), daily seizure control medications, annual MRI’s, ongoing EEGs and quarterly infusions. Medicaid enabled us to employ an in-home care provider, who trained to understand our daughter’s multiple disabilities and medications.
Our family was able to rebalance financially and continue to pay out of pocket for necessary additional therapies, such as a special needs music class. All of the health care through Medicaid meant our daughter could be supported in her development and excel. We saw the impact daily, as she developed physically, cognitively and started to achieve developmental milestones. She learned to walk, first using a walker and then on her own. She learned to use adaptive spoons and sippy cups, and eventually transitioned to standard toddler utensils. She started to communicate, first by pointing at pictures and then through some basic sign language and vocalizations. Most importantly, our bright and determined child was able to engage in classroom activities with her peers and became known as quite the resident artist.
While non-verbal, Livy established deep friendships and support networks in school, with her medical providers and through her many extracurricular activities. She served as a peer role model to other children and families with disabilities, and was featured in several state and national campaigns for early childhood development. Livy was a powerful young person who had a huge impact on all those around her.
Livy passed away suddenly last December, after experiencing a massive seizure in her sleep, several weeks shy of her fifth birthday. Losing your child is like acquiring a gaping wound that never heals. The only soothing balm has been the memories we created with Livy. The precious days we spent with her playing in the pool, gardening, traveling, making art projects, singing “The Itsy Bitsy Spider,” and snuggling up with a book. The memories keep us going, fighting and advocating in her name for other children and families.
Without Medicaid and all that it allowed my daughter, I don’t know what our memories with Livy would look like.
Whatever direction our government takes on providing health care to its citizens, Medicaid must be fully funded so that waivers such as Institutional Deeming can continue. Regardless of one’s position on the current health care law, it is important to recognize evidence-based programs and policies that dramatically improve health outcomes for our nation’s children.
Eli Gelardin is executive director of Marin Center for Independent Living. He has worked in disability advocacy and services for the past 15 years, and also serves as a board member on the Matrix Parent Network & Resource Center. Eli lives in the San Francisco Bay Area with his wife and son. This story was originally published July 26, 2017 on the blog “Dear Livy: Letters to My Daughter.”
Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.
Equal Voice is Marguerite Casey Foundation’s publication featuring stories of America’s families creating social change. With Equal Voice, we challenge how people think and talk about poverty in America.
Paul Nyhan is the senior writer for Equal Voice News. He has worked as a journalist at Bloomberg News, the Seattle Post-Intelligencer and Congressional Quarterly. He has covered social policy for more than 20 years.
2017 © Equal Voice for America’s Families Newspaper
Published by Marguerite Casey Foundation