MIT political scientist Andrea Campbell is known for her research on Social Security, Medicare, and other safety-net policies. Yet when Campbell’s pregnant sister-in-law suffered a spinal cord injury, their family’s on-the-ground experience was more bewildering and difficult than Campbell expected. Her new book describes these experiences. Below is an edited and condensed transcript of our conversation.

Harold Pollack: Let’s start with the accident at the core of this book.

Andrea Campbell: My sister-in-law Marcella Wagner married my brother, Dave Campbell, in 2010. In 2012, she entered nursing school. That February, she was on the highway and got cut off by another driver who swerved in front of her. Her car rolled over, crushing the roof. She had a spinal cord injury, and is paralyzed from the chest down. She has to use a wheelchair. She needs round-the-clock medical help. For example, she has to be catheterized every four or five hours or so.

Fortunately, she didn't have any brain damage. She can speak perfectly fine, but she has very little use of her hands, no fine-motor control. She can control her arms to some extent, but that's the extent of her physical capabilities at this time.

My nephew was born by emergency c-section. He seems to have been unscathed by the accident, even though he was born a bit premature.

HP: She was uninsured when she had this accident.

AC: That's right. My brother works for a very small metal fabrication firm that makes parts for small airplanes and houseboats. That firm's never offered health insurance.  She did have insurance coverage for the pregnancy. In California, a program called AIM--Access for Infants and Mothers--provides health insurance to pregnant women whose incomes are too high for Medi-Cal—California’s Medicaid program--and who don't have access to employer-provided insurance. It would cover the pregnancy and 60 days postpartum. She and my brother knew that the baby would be covered by the Children's Health Insurance Program (CHIP), as well.

They knew that my brother would continue to lack coverage, under any circumstance really. She knew that after the AIM ran out, she could enroll in [her nursing school’s student health plan]. She had already filled out the paperwork when the accident happened. She and the baby would both have insurance.

HP: If she had been insured, how do you think the story would be different?

AC: That's a very good question. Let's say she had had insurance through the student health plan. That plan has a 20% co-payment. She was in the intensive care unit for a month and then in a rehabilitation hospital for 3 more months. It's likely they would have had to declare bankruptcy.

There's also the issue of long-term supports and services. Beyond doctor and hospital visits, she needs help with personal care. Health insurance, whether it's private or public, doesn't cover long-term care. The main source for that is Medicaid, which is really the only public source of long-term care or long-term supports and services.

HP: Your book notes that Medicaid is actually several different programs—programs that also operate quite differently across the fifty states…

AC: In the process of writing the book, I would talk to disability activists in other states, and they would say: “Thank God they're in California. California is nirvana.” California's a progressive state that's really tried to do a lot, but its programs turn out to have significant limitations.

About half the states, including California, have an asset cap for Medicaid eligibility. To be eligible for Marcella’s disability-related Medi-Cal benefits, David, Marcella, and their baby can only have assets that total $3,150, excluding their home and one vehicle. They had to liquidate all their assets after the accident to qualify for Medicaid.

HP: How does it change her life that she can only have $3,150?

AC: It's pretty scary. After the accident, she and my brother bought a used wheelchair van so that counts as their exempt vehicle, but my brother still needs another car to drive to work. The value of that car counts against the $3,150. He used to have a hobby of working on old cars. He had to sell all the old cars, but he kept a 1968 Datsun pickup. I learned how to drive in high school on a 1968 Datsun pickup. It was an old car thirty years ago.  Now Dave is driving this old vehicle with no modern safety features – and he’s the only able-bodied adult in the household.

It's also very hard to meet emergencies. At one point, the ramp mechanism on the wheelchair van stopped working. It had to be repaired. The labor and parts came to a few thousand dollars. That's nearly the sum of their asset limit. As it happened, their tax refund had come in from the previous year and they just sent it right back out again to pay for the wheelchair van repair. That's an example of the kind of emergency they might not be able to meet because of this asset limit.

If they were to try to save for college using a 529 account, which is the main tax-favored fund available to parents, California would count that against their asset limit. So they're barred from doing that.

HP: Can they have a 401(k) account for her retirement, or for his?

AC: Marcella had previously worked at a bank, where she’d opened a 401(k). Such accounts count against the asset limit. So she had to liquidate it. She's under 59½. So she had to pay an early enrollment penalty, as well.

 Limitations of Health Reform

HP: Many people, including me, hope that the Affordable Care Act (ACA) will protect people who experience catastrophic illness or injury. ACA has done much good. It hasn't helped Marcella as much as we hoped.

AC: That's right. Let's imagine ACA had been in place so she and my brother had permanent health insurance. Much of her care in the ICU and then the rehabilitation hospital probably would have been covered. But then there's her need for long-term supports and services. ACA, [aside from the ill-fated and now-repealed CLASS Act], left that whole set of needs largely untouched….

Medicaid does cover many things Marcella needs that private health insurance typically wouldn’t cover, like catheters, even a wheelchair. Medicaid covers things that Medicare won’t, or that Medicare will cover only with a 20% copay.

HP: People can’t do without Medicaid; it is the safety net for every other kind of insurance. Hopefully the harm imposed on Marcella and others by these asset tests will be politically generative. Have you gotten any reaction from policy makers about these issues?

AC: I've been talking to folks at the New America Foundation who have been working on trying to get rid of asset limits, not only in Medicaid, but also in other means-tested programs. Some lawmakers may make new proposals on this after the election. A number of states have dropped Medicaid asset limits. The new ACA eligibility categories don't have asset limits. Policy seems to be headed in this direction. I would really like to see social insurance for long-term care and long-term supports and services, but that's a more difficult political goal. If you think about modest, achievable goals, eliminating asset tests is one.

Catch 22

HP: There are some programs in California that might help Marcella. What's the state of things now?

AC: There's one very attractive program, if we can figure out a way to get her into it. It’s called the California Working Disabled Program. A number of policies have been passed around the country to allow disabled people to earn income without losing their Medicaid eligibility. Right now, if you start to earn income, you could lose your eligibility and you probably don't have the type of health insurance you need on the other side.

CWD allow you to work, and you can buy into Medi-Cal on a sliding scale. You pay a monthly premium which starts at $25 and can’t exceed $250.  Any income the disabled person earns can be put aside in a savings account that does not count against the asset limit. That would be a way to build up an emergency fund. Earned income can also be saved in a retirement account, which doesn't count against the asset limit.

HP: How do we know whether she can enter that program?

AC: That's what's difficult. As I started researching CWD, I was very excited and told my brother about it. He said: “We've heard about it as well. A social worker already told us that she's not eligible.” At first, I thought that was just a mistake by the local social worker. It's not a very large or well-known program. Only 1% of all Medi-Cal patients are in CWD.

Later on when I was talking to some state level officials who run CWD, they said: Yes, indeed, she is not eligible because she's in a “free” version of Medicaid that doesn’t charge a monthly premium. Program officials are barred from making her worse off. They're barred from shifting her from free Medicaid into a version of Medicaid that she has to pay for. The way she would have to get into CWD would be to leave free Medicaid, get a job, and then try to re-enter Medicaid and hope that there is no gap in coverage and that this all goes smoothly.

My brother and sister-in-law are just petrified by the prospect of doing that. If something were to go wrong, and if she were to be left without insurance coverage even for a month, it could be devastating for them.

HP: Your brother faces dramatic constraints on how much he can work or save because Marcella is on Medicaid. Strategically speaking, they’d be much better off if they got divorced or moved to a more generous state.

AC: Sadly, the most logical move they could make is to get divorced. I don't know what would happen if they continued to live together (would a social worker look the other way?  It’s unclear).

There is the question of moving to a state with better policies. The difficulty there is no state will pay for home wheelchair renovations. Now, their home has been renovated to be accessible to her. It took friends and family two years to do the renovations, volunteering nights and weekends. They just finished this spring.

Much of her care is performed by family members. She has a large family. No state funds 24-hour personal care assistance. If they were to move to another state, they would be leaving behind this network of friends and family that is very important to their everyday lives. Friends pick up my nephew from daycare several times a week when my sister-in-law is at rehab. They have relatives who do her care at certain times when Dave can't. It would be very difficult to pick up and leave all that behind.

Lessons learned

HP: Are there other countries that handle these problems better?

AC: There are. Some countries provide long-term care, supports and services on a social insurance basis, rather than a means-tested basis. One difficulty with means-testing is that family members can't help. There's no way to top off public benefits. We see this, for example, with older people who go into nursing homes funded by Medicaid. A family might be able to chip in a bit more to move that parent or grandparent to a nicer nursing home, if they could just chip in a thousand or two more a month. They can't afford the whole bill but they could put that relative in a better situation. Medicaid rules prevent you from doing that. The advantage of social insurance is that families can help without penalty, and without the person losing their benefits.

HP: How are you thinking differently about social and health policy, now that you and your family have lived through such a profound challenge?

AC: I guess I never realized the limitations these programs place on people, how they trap people. If you think about how people who rely upon means-tested programs might better themselves, you realize the dilemma. People face closed doors or negative incentives at every turn.

The American impulse to better oneself is really undercut for these folks. I didn't fully comprehend what that meant to people's everyday lives until this accident happened.

Harold Pollack is the Helen Ross professor at the School of Social Service Administration and co-director of the Crime Lab at the University of Chicago. He is a nonresident fellow of the Century Foundation.