On a crisp California morning in February 2012, my sister-in-law, Marcella Wagner, was driving down the interstate toward Chico State University, where she had just entered the nursing program. She was thinking about the day ahead when suddenly another driver swerved in front of her. To avoid a collision, she jerked the wheel hard, and her car veered off the freeway. It rolled over, crushing the roof. The other driver sped off, never to be found. Marcella was seven and a half months pregnant. Miraculously, the baby survived and was not harmed. But Marcella was left a quadriplegic, paralyzed from the chest down and with little use of her hands. She will need a wheelchair and round-the-clock personal care assistance indefinitely.
The accident caused more than the physical and emotional devastation that upended Marcella's career plans. It also brought about an economic tragedy that hurtled her young family into the world of means-tested social assistance programs, the "safety net" of public programs for the poor. My brother, Dave Campbell, works for a small company that doesn't offer employee benefits. Nonetheless, before the accident Marcella had managed to secure health insurance for both her and the baby. Her pregnancy and 60 days' postpartum care was being covered by Access for Infants and Mothers, California's health insurance program for middle-income pregnant women. After the birth, Marcella would have been able to join the university's student health plan. The baby would be covered by the Children's Health Insurance Program, the federal-state plan for lower-income children. Marcella and Dave thought they were all set. And then, with the accident, they fell down the social assistance rabbit hole.
At first I thought I would be a great help to Marcella and Dave as they negotiated this web of programs. After all, I'd been teaching and writing about social policy for years, first at Harvard and then at MIT. But I was soon humbled by how immensely complicated the programs are on the ground, and shocked by how penurious. The programs that Marcella now needs as a quadriplegic have helped her in many ways, but have also thrust her, my brother, and their young son into poverty, with little hope of escape. Until this accident, I did not realize the depth of the trap.
And this is not just the story of one family hit by tragedy. Millions suffer under such program strictures and limitations. Between ages 25 and 65, two-thirds of Americans will live in a household receiving means-tested benefits, according to sociologists Mark Rank and Thomas Hirschl. And even if we avoid these programs during our working years, most of us will be disabled at some point in old age, and Medicaid — a means-tested social assistance program — is the most likely source of the help we'll need. This is an American story, the product of the uncertain and incomplete system of social protections in the United States.
Down the rabbit hole
After the accident, Marcella was airlifted to the main regional hospital, Mercy Medical Center in Redding. Our family knows Mercy well: Dave's and my late father had delivered thousands of babies there as an OB-GYN; he also served two terms as the chief of medical staff and later was chief medical officer and regional vice president.
In the days immediately after the accident, Dave lived at the hospital, sleeping in Marcella's room in the intensive care unit on one of those torturous chair-bed combos usually reserved for expectant fathers in labor-and-delivery rooms. He went upstairs to the neonatal intensive care unit to see the baby when he could. Logan was doing great, gaining weight, looking cool in the sunglasses he wore when getting ultraviolet light treatments for his jaundice. In contrast, Marcella suffered a series of scary setbacks. The reality of her long, long road ahead sank in. Dave was doing remarkably well, though, considering that all their plans lay in shambles, and that rather than juggling a newborn, a job, and a wife in school, he was contemplating a future in which he must somehow make a living while caring for an infant and a permanently disabled spouse. I plied him with coffee, and we had long talks in the hospital cafeteria, where doctors and nurses who had known Dad came over to offer their support.
Dave mentioned the things he'd been hearing in the days since the accident — that Marcella's health care would be covered by Medi-Cal but also, "You'll have to get rid of everything," "You'll have to declare bankruptcy," and, more helpfully, "Go talk to Brian — he's the Medi-Cal guru." Brian (not his real name) is the medical center's social worker who handles the Medi-Cal cases. He met us to begin to explain how the program works.
From my social policy research, I knew that Medi-Cal is California's version of Medicaid, the public health insurance program for the poor. Medicaid was enacted in 1965, part of the same legislation that created Medicare, the public health insurance program for older Americans. Medicare is a federal program, which means that eligibility and benefit levels are the same nationwide. By contrast, Medicaid is run jointly by the federal government and the states. The federal government pays part of the cost of Medicaid and requires that every state cover several "mandatory populations," such as poor children and pregnant women and most disabled and elderly people eligible for Supplemental Security Income, the federal cash assistance program for the poor disabled, blind, or aged.
Brian, patient and soft-spoken, began to explain what would happen with Marcella's hospital bills. The Access for Infants and Mothers program in which she had enrolled for her pregnancy would pay some of the bills for the first 60 days after giving birth. Medi-Cal would pay the others, and then would be Marcella's sole insurance after the Access for Infants and Mothers coverage ran out.
In order to get poor people's health insurance, Dave and Marcella must stay poor, forever
Brian continued: Marcella qualified for Medi-Cal because she is disabled, but because Medi-Cal is for poor people, Dave and Marcella have to be poor to receive it — they have to "meet" the program's "income test." Counterintuitively, meeting the income test doesn't mean having enough income (as in doing well on a test), but rather having low-enough income. The income test is actually an income limit.
Moreover, because Dave is employed, he and Marcella would be in a particular version of the program called "Share of Cost" Medi-Cal. It works this way: As a family of three with one disabled member, they are allowed to keep $2,100 of Dave's $3,250 monthly earnings to live on. The rest of Dave's earnings, $1,150, would go to Medi-Cal as the family's share of cost. That is, any month in which Marcella incurred medical expenses, she and Dave must pay the first $1,150. To our surprise, if Dave earned more money, the extra amount would also go to Medi-Cal: The cost sharing is a 100 percent tax on Dave's earnings. I figured out later that the $2,100 my brother and sister-in-law are to live on puts them at 133 percent of the federal poverty level for a family of three. Essentially, the way they meet the income test is for Medi-Cal to skim off Dave's income until they are in fact poor. Brian noted that they are "lucky" that they are allowed to retain that much income; if Marcella weren't disabled, the amount they'd be allowed to retain would be even lower than $2,100. And this is how things will be indefinitely. In order to get poor people's health insurance, Dave and Marcella must stay poor, forever.
How America's anti-poor policies hurt the disabled
American social assistance programs are stingy and difficult to access because of an age-old suspicion of the poor. They are designed to be less attractive than work. One problem is that they are so miserly as to be impossible to live on. For a disabled person like Marcella, whose expenses will be greater than for an able-bodied person, the limits are truly problematic. And because insurance for the poor is the only source of the long-term supports and services the disabled need, they get caught up in the anti-poor dragnet as well.
Stunned, Dave and I listened in silence. How are they going to raise a child at the poverty level?
I tried to think what I could do. "In a couple of years, as the baby's aunt, can I pay for preschool?"
"If it were considered a loan, yes. But if you simply pay for his preschool, it counts as income for Dave and Marcella, so no, you can't do that." Brian paused as that sank in. "Of course, if you happen to show up at their house with a carful of groceries, no one will know."
Later, Dave and I stood in the hallway outside the ICU. I pulled out a notebook, and we started listing his and Marcella's monthly expenses. Mortgage and property taxes: $1,000. Utilities: $200. Phones and internet: $180. Homeowners, auto, and life insurance: $225. Gas: $200. Logan's Healthy Families insurance premium: $45. We quickly approached $2,100, but hadn't yet included clothing, or toiletries, or Marcella's college loans. Or payments on the wheelchair van they will need. Or food.
With this information in hand, when Dave returned to work a few months after the accident, he pared down his hours to meet the $2,100 level: Why work more when it would all go to Medi-Cal? He and Marcella struggled to make ends meet on that near-poverty income. And then much later, at the time I was writing this, we discovered that he probably didn't need to reduce his pay; he and Marcella were probably not subject to a Share of Cost requirement even at Dave's pre-accident income, a revelation to which I will return. But we didn't know that for two years. And the income limits are only part of the difficulty of living under Medi-Cal. We next learned about Medi-Cal's other strictures, limits that do apply to Dave and Marcella and that are even more draconian.
Back in Brian's office, we heard that Dave and Marcella must also meet Medi-Cal's asset test. As with the income test, passing the test doesn't mean doing well or reaching a certain high level: The asset "test" is an asset limit. Their house and one vehicle are exempt. Beyond those two items, they can possess only $3,150 in assets, total. They had to liquidate everything else and put the resulting cash only into the house and the one vehicle. They couldn't use the money to pay household bills, credit card bills, or Marcella's student loans. They had to save every receipt to prove how the money was spent.
The asset test required them to cash in the small 401(k) account Marcella had started when she worked at the bank (and, adding insult to injury, pay the early withdrawal penalty). They had to spend down their bank account. Even Dave's hobby runs afoul of the asset test: He had to sell the old cars he was working on. These asset tests were established to prevent people with substantial financial resources from enrolling in these programs. Most applicants, however, have very low assets; at the same time, trying to ferret out their tiny savings is very costly. Indeed, about half the states have eliminated their asset caps for Medicaid precisely because the administrative cost wasn't worth it. But not California, where Dave and Marcella happen to live.
The outpouring of support from the community has been astounding. So has the feeling of being hunted.
I sat there wondering how they were going to fashion a life for themselves on $3,150 in assets. These social policies for the poor are no hand up, as many politicians would have us believe. Marcella and Dave aren't allowed to save for retirement (retirement plans aren't exempt from the asset test in California as they are in some states). They can't establish an emergency fund in case the water heater breaks or they need a new roof. They can't save for Logan's college education with a tax-free 529 plan — California is one of 24 states that haven't exempted such plans from their Medicaid asset tests — although two other, less attractive college savings vehicles are still available to them.
In sum, they are barred from doing many of the things middle-class families are constantly advised to do: Save for retirement. Save for emergencies. Take advantage of tax-free college savings plans. Just $3,150 in total assets — that's it.
Brian added, "You're lucky — without the baby, the asset limit would be $3,000."
Later, I found out that the asset limit was last changed in 1989.
Brian saw the look on our faces. "Medi-Cal is a poor person's program," he said with a shrug. "And it's not really even insurance — it's a loan." Thus, any inheritances Dave and Marcella might receive will go to Medi-Cal. Any Medi-Cal services that Marcella uses after the age of 55 will be added to a tab that she will rack up over the rest of her life; when she and my brother die, the state will make a claim on their estate for reimbursement, as Logan will no longer be a minor at that point. He will inherit nothing.
My brother and I said nothing as we walked out of Brian's office and headed back upstairs to the ICU. Each of us was processing the awful news: Dave and Marcella faced a lifetime of financial insecurity to get the medical care she needs.
The high cost of being permanently disabled
American public social programs run on two tracks: social insurance for workers and social assistance for the poor. Marcella isn't eligible for the programs of the "upper" social insurance track. She hadn't worked enough quarters before going back to school to be an insured worker. She hadn't paid into Social Security long enough to be eligible for Social Security Disability Insurance, the monthly cash benefit for the permanently disabled. Nor had she paid into Medicare long enough to be eligible for that form of public health insurance. As a nonworker, she is eligible only for the means-tested programs — Medicaid/Medi-Cal for health insurance and SSI for cash assistance.
I was devastated when I first realized Marcella was outside the social insurance track. SSDI benefits are typically larger than SSI benefits. Medicare is more widely accepted by physicians and hospitals than Medicaid. I thought her ineligibility was a disaster. And it is: Dave and Marcella will have to stay on the social assistance track forever for her to get health insurance. But as it turns out, even if she had another source of health insurance, the social assistance track is inevitable for her: There's no other source for the lifelong services the disabled need, especially for personal care assistants. Medicare doesn't cover long-term care. Private health insurance doesn't cover it. There is a tiny market of private long-term care insurance, but it's a highly flawed insurance product, almost no one Marcella's age has it, and it won't cover a lifetime of need. Thus, well beyond Marcella's health insurance needs are her long-term personal assistance needs. For those, Medicaid is essentially the only alternative. And so, the poverty track it is.
In contrast, some other countries provide services for the disabled through their health insurance systems; yet others provide them through a payroll-tax-funded social insurance program, through which the disabled can get assistance without having to be impoverished. But not in the United States. Advocacy groups for the disabled have been railing against this system for years, to little avail. One political problem is that unless they have a disabled family member, many Americans may not realize that help comes only in social assistance form. The other is that some policymakers, more interested in minimizing government spending than in meeting the needs of the disabled, resist policy change.
In-Home Support Services (IHSS) is the California program that pays for personal care assistance for Medi-Cal recipients, allowing the disabled, the aged, and the blind who would otherwise go into a nursing home to remain in their own homes. Although funded by federal, state, and county money, the IHSS program is run by the county, which sent a social worker to evaluate Marcella's needs. Because of the extent of her paralysis, Marcella qualified for the maximum number of care hours. However, Dave must still handle all her care at night when they are together, and wakes every five hours to do so. I worry that he'll never get a full night's sleep again.
When disaster strikes, the holes in the American safety net become woefully apparent
Beyond personal care attendants, a disabled person like Marcella needs medical equipment such as a wheelchair, incontinence supplies, and assistive technologies, not to mention an accessible place to live and a wheelchair van for transportation. Public assistance for these needs is extremely spotty. Medicaid will pay for incontinence supplies, although fewer than Marcella actually needs; every month she has to apply and get approval for 30 additional catheters. Medicaid will pay for a wheelchair, although not necessarily an adequate one.
Accessible housing and transportation is another matter altogether. Some states allow Medicaid dollars to pay for items such as grab bars, wheelchair ramps, and bath seats. But those are small potatoes. There's essentially no help in the United States for purchasing the big-ticket item: accessibility renovations to the home, which can cost tens of thousands of dollars. Nor is there any help at all to get a wheelchair van. Dave and I looked online: A used one costs $25,000. Dave and Marcella don't have that kind of money, but their community has been extraordinarily generous. We started an online fundraiser to buy a van, using Marcella's brother's name, since we can't use hers.
Fortuitously, the home Dave bought years ago is one story and just two steps above street level; unfortunately, it had small rooms, narrow hallways, and tight corners. An architect from a nearby community who had experienced temporary paralysis volunteered his expertise in creating a new floor plan with a more open design. The weekend after the accident, when Marcella's baby shower was to have had been held, friends and relatives were packing all the couple's belongings and moving them to the storage facility run by Marcella's oldest brother. The crew of family and friends gutted the house and began the renovation. A local construction company offered to coordinate the subcontracting, and some materials were donated. Local vendors offered many other items at cost.
The outpouring of support from the local community has been astounding. But the feeling of being hunted has been, too. Just one example: A local cafe fell behind on its taxes. Rather than see it close down, loyal patrons held a fundraiser, which happened to take place shortly after Marcella's accident. The cafe owner told the local newspaper she would give Marcella any extra funds raised.
This was a lovely, humane gesture. Only problem is, the social worker reads the paper, too. After the fundraiser, she called up: Where's the money? A lump sum could violate Dave and Marcella's asset test. I think: It's all going toward the house! If we had to pay a contractor to do the renovation, it would cost $150,000. You should be happy we're doing it on a shoestring. That's where the money is going.
At any rate, Dave and Marcella began to figure out how all the other pieces of their lives were going to work. Marcella couldn't breastfeed Logan because of her medications, a huge disappointment to her. She and the baby did qualify for Women, Infants and Children, the supplemental nutritional program for lower-income pregnant and breastfeeding women, infants, and children under the age of 5. WIC supplies infant formula, but only one type, which made Logan throw up. Our stepmom got him the Costco brand, which went down better. I wondered what people who don't have middle-class relatives do in a situation like this.
Dave needed to figure out a way to get to his job. The wheelchair van is his and Marcella's exempt vehicle; any other vehicle counts against their Medicaid asset limit. Among the old cars Dave was working on, he decided to keep a 1968 Datsun pickup, because its value is just a few hundred dollars. It's 45 years old and weighs 2,200 pounds, less than a Miata sports car. It has no modern safety features. So the only able-bodied adult in the household will have to drive an unsafe car to work. And he can't transport Logan in it because it has no back seat.
I worried about Dave. He had so much on his plate. I hoped the stress wasn't sending his blood pressure up. He spent all his time in hospitals, surrounded by medical personnel, tending to everyone else — I wished he would see a doctor.
American social policy's rotten core
And then we found out that one crucial piece of information we had learned about Medi-Cal was wrong. Nearly two years after the accident, I got access to state-level Medi-Cal officials, who pulled up Marcella's records and told me that she wasn't enrolled in Share of Cost Medi-Cal. She was in SSI-linked Medi-Cal. So her health insurance is free. She has no Share of Cost requirement.
No caseworker had ever mentioned this crucial fact. The key question became: If Dave returned to his pre-accident income of $3,250 per month, would Marcella still be eligible for free Medi-Cal? Or would they be subject to Share of Cost and back in the same boat? Medi-Cal officials wouldn't tell me, and referred me to the calculators on the World Institute on Disability website.
Could we approach Marcella's caseworker to run the what-if scenarios and see how much income Dave could earn without threatening her eligibility? No, state officials told me: County caseworkers are incredibly busy, particularly with Medi-Cal expansion under the Affordable Care Act. This would be a low-priority request. Just look at the calculators and figure it out, they advised.
But I can't — not with any certainty, to my enormous frustration. So much for helping my brother and sister-in-law navigate the system. Medi-Cal is a collection of more than 100 programs, each with its own income methodology and rules. A person familiar with Medi-Cal likened the program to the Winchester Mystery House, the San Jose mansion constructed continually over four decades by the odd widow of the Winchester rifle fortune: There is no master plan. "All the ‘rooms' added on over the years makes it very difficult to see which rules apply to which groups and to follow them all the way through," this observer told me. And even if Dave and Marcella could retain a bit more income to live on, they are still subject to the asset limit and all of Medi-Cal's other strictures. They are still trapped in an eccentric's mansion, where the stairways lead to ceilings and the doors open onto walls.
American social policy has a rotten core: incomplete protections from life's risks. For Dave and Marcella, private insurance would have meant bankruptcy (while the Affordable Care Act removes annual and lifetime caps, large out-of-pocket expenses remain a possibility). Medi-Cal means dire financial straits for the rest of their lives. It's instructive to read through the heartbreaking stories on other people's online medical fundraising pages — so many face similar horrible situations, including many who thought they had good health insurance until a catastrophic accident or expensive medical condition proved otherwise. When disaster strikes, the holes in the American system of social protections become woefully apparent.
This article is adapted from Andrea Louise Campbell's Trapped in America's Safety Net.