Richard B. Primack
Climate Change Comes to Thoreau's Woods
We got our ﬁrst taste of Medi‐Cal’s limits as an insurance program when Marcella’s condition was stable enough for her to be transferred from the ICU to a rehabilitation hospital. As poor people’s insurance, Medicaid is a poor payer. Its reimbursements to physicians and hospitals are generally lower than those under Medicare or private insurance. As a result, many health care providers are reluctant to accept Medicaid patients. Moreover, among state Medicaid programs, Medi‐Cal is a particularly low payer. This became a problem for Marcella as the day approached for her release from the acute care hospital to a rehabilitative setting. The closest facility that specialized in spinal cord injuries was in the Bay Area, a four‐hour drive away. Although the prospect of being so far from home was daunting, more problematic was the facility’s hesitancy to admit Marcella. It wants to make sure that each new patient is willing to work hard and will be worthy of one of the limited rehab slots. A nurse drove up to Redding to evaluate Marcella, and saw that she’s a determined young woman—deﬁnitely a good candidate for the facility’s ser vices. But it also wanted to make sure she was completely stabilized and strong enough to breathe on her own before starting the demanding rehab regimen. We got the impression that Medi‐Cal would pay for only one month of rehab, so Marcella had to be completely ready when the time came.
In the meantime, Logan was released from the neonatal intensive care unit after two weeks. Although born several weeks premature, he was unharmed by the accident (“I was his human airbag,” Marcella says). At this point he just needed to keep growing and gaining weight, which he could safely do outside the hospital. Dave’s and my mother came out from Minnesota, where she had retired a few years prior, to care for Logan. While Marcella remained in the ICU for several more weeks, Mom and Logan stayed in a spare bedroom at the home of one of Marcella’s brothers.
Now out of the hospital, however, Logan needed a physician. Several members of Marcella’s family had long seen Dr. S, a charismatic and well‐liked general practitioner in town. Marcella had known him since she was ten years old, and hoped he would be Logan’s physician as well. But Dr. S doesn’t accept Healthy Families, because it’s a low payer. The ICU nurses gave Marcella the names of several good pediatricians at the local county clinic, the public facility that takes Healthy Families and Medi‐Cal. But Marcella was intent on having Dr. S, who, given the circumstances, relented. He promised to see Logan for his well‐baby visits, waiving his personal fee, although Dave and Marcella still had to pay the ofﬁce portion of the charge out of pocket. For any other ser vices or procedures, such as vaccines, they would have to go to the county clinic.
Except that’s not so easy either. Because Logan was born prematurely, he was susceptible to respirator y syncytial virus and was supposed to get a monthly injection of RSV antibodies until winter was over. He got his ﬁrst one in the hospital, but needed one more after he was discharged. Dr. S’s ofﬁce wouldn’t give the injection, but said that County would. Dave bundled Logan off to the county clinic, only to ﬁnd that it didn’t have the vaccine. Dave was told to get it from the pharmacist, and then the clinic would give the injection. But Dave didn’t have Logan’s Healthy Family card yet, and the pharmacist wouldn’t sell him the vaccine for cash, saying that he had to have insurance to get the vaccine; otherwise it constitutes fraud. Dave found that puzzling, but moot: the shot cost $800, which Dave wasn’t about to pay. The pharmacy was eventually able to get approval for the vaccine from Medi‐Cal, and ended up giving Logan the shot in its own ﬂu clinic. So the baby did get his shot, but not before a delay and a confusing runaround—certainly not the last one the family would encounter.
Marcella dreaded the four‐hour drive to the rehab hospital in the Bay Area. Her neck wasn’t completely healed where doctors had surgically stabilized it after the accident. The prospect of traveling on a freeway again terriﬁed her. Then, in an act of kindness, Mercy Medical Center donated an air ambulance ride, so she ﬂew to the Bay Area instead.
Marcella stayed in the rehab hospital for three months. It took longer to stabilize her breathing than anticipated—she also wasn’t able to speak for a while due to injured vocal cords, and spent the ﬁrst two months in the spinal cord ICU—but eventually she attended daily physical therapy sessions and met with a phalanx of social workers and therapists. Mom, Marcella’s mother, and Logan moved into a small apartment adjacent to the hospital that family members rent for a nominal fee. Dave again slept in Marcella’s hospital room. He and other family members who could travel down to the Bay Area learned how to perform her daily care. Dave quickly became a great favorite of the hospital staff, not only for his quick learning and witticisms but also for his formidable mechanical skills. He rigged up a Camelbak water reservoir with a special wire to bring the drinking tube close to Marcella’s mouth. That way, she could easily sip and stay hydrated, a necessity for quadriplegics. He noticed a machine in her room that often made a hissing noise. “It always does that. It’s incredibly annoying, but we learn to ignore it,” a nurse told him. He repurposed a coupling and a short tube from the respiratory department that solved the problem. In days, all the patients in the unit had them. No more hissing. The nurses loved him for that.
After three months in the rehab facility, Dave and Marcella returned to Redding. Medi‐Cal’s limitations once again became apparent. They left the hospital with a bag of prescriptions, but discovered that Medi‐Cal will pay for only six prescriptions per month. They have to pay for the others out of pocket. One of the uncovered drugs prevents the accumulation of calcium in Marcella’s joints (when a bone breaks, as several of Marcella’s had during the accident, the body produces extra calcium to heal the fracture, and any excess gets reabsorbed; however, if the person is paralyzed and can’t move, the excess calcium tends to deposit in joints). She had started this drug’s course in the hospital but couldn’t afford the rest, so she did without it upon release, hoping for no negative effect. Later on, she staggered her medications to stay under the monthly limit, but continued to pay out of pocket for a blood‐pressure‐stabilizing medicine—the drug in the class that Medi‐Cal would cover leaches potassium from the body, which is bad for the heart.
Back in Redding, Dave, Mom, and Logan moved into our stepmom’s house, and Marcella lived with her parents as she and Dave waited for a friend‐and‐family‐initiated remodeling of their house to be completed. They adjusted to life outside the cocoon of twenty‐fourhour medical care. Beyond the immediate daily struggles to perform Marcella’s care and keep the baby occupied were the new realities of life. How would Marcella get the equipment and the personal care ser vices she needed? How would they manage life’s surprises with virtually no savings? The complexity of the system they must navigate from now on is almost unbelievable. Back at Mercy, I had drawn up a list of all the programs we had to keep tabs on, and Dave and I had gone to an ofﬁce supply store to get him a portable ﬁle box. He needed to get Logan’s Healthy Families application going. He had to tell AIM when the baby was born so it could begin to count the sixty days of postpartum care it would cover. He needed to ﬁle for Unemployment Insurance or California paid family leave for the period he would be out of work. In the early days, we had so many questions about Marcella’s eligibility for various programs. Medicare? No. Medi‐Cal? Yes. SSDI? No. SSI? Yes. IHSS—what’s that? I thought Dave’s head would explode. It was impossible for any single person, even nondisabled, to navigate the entire, immensely complicated system alone. Marcella’s sister and sister‐in‐law divvied up the programs, got permission to act as her proxy, and began ﬁguring everything out.
American public social programs run on two tracks: social insurance for workers and social assistance for the poor. It turns out that 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 (after a two‐year waiting period, SSDI recipients can go on Medicare). 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 beneﬁ ts are typically larger than SSI beneﬁ ts. 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 as chapter 3 explains, 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‐Home Support Ser vices (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 (note that long‐term care [LTC] is an older but still common term connoting more medicalized care, often used with regard to the elderly, while the newer long‐term services and supports [LTSS] is preferred by the disability community, indicating the supports that allow the disabled to live independently at home). Beginning in the 1990s, many states secured waivers from Medicaid regulations so that they were permitted to use Medicaid money not just for institutional care but also for care provided in the home, such as IHSS. 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.
IHSS ser vices can include personal care (such as bowel and bladder care, bathing, grooming, and paramedical ser vices) as well as household tasks (housecleaning, meal preparation, laundry, grocer y shopping) and accompaniment to medical appointments. Because of the extent of her paralysis, Marcella qualiﬁed for the maximum number of care hours. She also received some additional hours from another program called In Home Operations, for a total of thirteen per day. Home care workers’ wages are set by the county; Shasta County IHSS care workers earned $9.30 per hour in 2012 (a wage rate that ironically leaves a full‐time care worker him‐ or herself below the poverty line for a family of three). Alternatively, if Marcella’s family members take on the care, they too can be paid, as is the case in a number of states. They would have to ﬁll out time cards, which Marcella would need to approve and then submit to the county. However, even though Marcella receives the maximum number of hours of care, Dave must still handle all her care at night when they are together, and wakes every ﬁve hours to do so. I worr y that he’ll never get a full night’s sleep again.
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 thirty additional catheters. Medicaid will pay for a wheelchair, although not necessarily an adequate one. The rehab facility social worker doubted Medi‐Cal would pay for a fully reclining wheelchair, and ordered a partial‐tilt one instead. Now when Marcella has to be catheterized every ﬁve hours, she has to stop what’s she’s doing and go home to a bed where she can lie ﬂat. Later, her rehab physician in Redding wrote her caseworker, saying that Marcella needs a reclining wheelchair. After six months, no response.
In contrast, Medicare will fund only some of these items, and then only with the patient paying 20 percent coinsurance. Such coinsurance can be substantial—electric wheelchairs for quadriplegics can run $10,000 to $30,000 or more, the special cushions and chair backs hundreds or thousands of dollars additional.
Quite often, people can’t procure needed equipment through the public health insurance programs, but rather rely on a patchwork of advocacy and charitable organizations that are tr ying to ﬁll the gaps. Prominent among these are Centers for Independent Living, nonproﬁt organizations run by and for people with disabilities. CILs are nonresidential facilities that assist the disabled with daily living issues. They provide housing information, peer counseling, personal assistant services, independent living skills training, legal aid, assistive technolog y ser vices, employment readiness training, beneﬁ ts counseling, and referrals. The staff of the Independent Living Services of Northern California (the Redding/Chico CIL), which recycles and redistributes assistive technologies, were wonderfully helpful. They contacted us shortly after the accident, and offered their “library” of beds, lifts, and other equipment.
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. Disability activist Michael Ogg, whose story is in chapter 3, spent $150,000 making his home accessible, entirely out of his own pocket. 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. Fortunately, the home Dave bought years ago is one stor y and just two steps above street level, but it had small rooms, narrow hallways, and tight corners. An architect from a nearby community who had experienced temporar y 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. All over town, people held fund‐raisers for Dave and Marcella. Marcella’s brothers set up an account at a local bank and an online fund‐raising campaign—but in their names, so that the collected funds wouldn’t interfere with Marcella’s eligibility for Medi‐Cal and the other public programs (all the money went to the house any way). Dave and Marcella bought a wheelchair van, but with their limited resources they ended up ﬁnancing it, and the monthly payments continue to threaten their budget. But at least they could see their new lives taking shape.
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 café fell behind on its taxes. Rather than see it close down, loyal patrons held a fund‐raiser, which happened to take place shortly after Marcella’s accident. The café 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 fund‐raiser, 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 breast‐feed 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 breast‐feeding women, infants, and children under the age of ﬁ ve. 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 ﬁ gure 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 forty‐ﬁve 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 backseat.
Then there was the child care conundrum. Mom had come from Minnesota to care for Logan. But she couldn’t stay forever—who would care for him after she left? And with what funds? I dreaded the day Mom would need to go home.
Finally, 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 ever yone else—I wished he would see a doctor.
And then we found out that one crucial piece of information we had learned about Medi‐Cal was wrong. In Januar y 2014, nearly two years after the accident, I was fact‐checking this book. 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. Who knows when we would have stumbled upon it had I not written this book. But then 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.
From what I could discern, at Dave’s pre‐accident income Marcella’s SSI would decrease and even disappear, but she’d still be eligible for free Medi‐Cal under a different program, Aged and Disabled Federal Poverty Level Medi‐Cal. However, if Dave’s income increased much above that level, Marcella would get kicked into a third program, Aged, Blind, Disabled Medically Needy Medi‐Cal, which does have a Share of Cost, which would likely drive their net income right back down again.
It appears, then, that Dave and Marcella didn’t have to trim their income down to the 133 percent of poverty level we’d thought, but they can’t go much above 200 percent without triggering Share of Cost Medi‐Cal—still below what’s needed for a modest living standard budget. I can’t be completely sure of this, but it also seems that they had lived for two years on a lower income than necessary. 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 over one hundred programs, each with its own income methodolog y and rules. A person familiar with Medi‐Cal likened the program to the Winchester Myster y 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 ver y 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.
Without Medi‐Cal, Dave and Marcella would be liable for enormous medical bills. Even if they’d had private health insurance in this pre–Affordable Care Act world, they probably would have exceeded the annual cap and perhaps even the lifetime cap (a limit on the amount an insurer will pay out) before her ICU and rehabilitation hospital stays were over. I never did ﬁnd out the total bill, but when we talked to Brian the social worker about a week after the accident, his computer screen showed the ticker for Marcella’s and Logan’s ICU stays up to that point: $474,000 for Marcella, $111,000 for Logan. The baby spent another week in the NICU, while Marcella was in the Mercy ICU for three more weeks, followed by the three‐month rehabilitation hospital stay. With private insurance, even if they didn’t hit annual or lifetime caps, Marcella and Dave may well have had a 20 percent coinsurance requirement, which would have totaled hundreds of thousands of dollars. Either way, they would have had to have declared bankruptcy.
At its center, 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 ACA 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 fund‐raising 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 other wise. And for those readers who think Dave and Marcella are irresponsible loafers who are soaking the public (after I wrote about their situation in the New York Times, I received several such e‐mails), consider the issue of long‐term care. Almost no one has private coverage for that. Certainly not at the age of thirty‐two, and not for decades’ worth of care. When disaster strikes, the holes in the American system of social protections become woefully apparent.
Copyright notice: Excerpted from Trapped in America's Safety Net: One Family's Struggle by Andrea Louise Campbell, published by the University of Chicago Press. ©2015 by University of Chicago Press. All rights reserved. This text may be used and shared in accordance with the fair-use provisions of U.S. copyright law, and it may be archived and redistributed in electronic form, provided that this entire notice, including copyright information, is carried and provided that the University of Chicago Press is notified and no fee is charged for access. Archiving, redistribution, or republication of this text on other terms, in any medium, requires the consent of the University of Chicago Press. (Footnotes and other references included in the book may have been removed from this online version of the text.)