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Multi-Status Families Brace For Health Care Reform

Evening Edition

Above: When the Affordable Care Act goes into effect, millions of new patients will have access to health care. But the law deliberately excludes undocumented immigrants -- estimated to be about 11 million nationwide. What does that mean for the many families with mixed immigration status? Some covered under the act, and some not. Reporter Megan Burks from KPBS and the Speak City Heights project in San Diego reports.

When Norma Navarro takes her kids to the doctor, she knows what to expect. It’s not the cost of treatment that gets to her — although that weighs on her, too. The thing she dreads is having to explain to her little boy and little girl why they don’t get the same treatment.

Aired 1/7/13 on KPBS News.

What do you do when one child can get health care and the other can't? It's a dilemma being felt more acutely as federal health reform opens access to care for millions, but not their undocumented family members.

Angel, 7, receives coverage through the Children’s Health Insurance Program. Navarro's daughter, Aneth, 10, only gets coverage once a year through the state’s Children’s Health Development Program, and then for just one month after her checkup. After that, the family has to scrape together the money to get her help, or forgo it.

She took the kids to the dentist recently, and learned each kid had three cavities. The clinic was ready to schedule an appointment for Angel’s fillings as soon as possible. But they had to wait to get approval on Aneth’s.

Special Feature Speak City Heights

Speak City Heights is a media collaborative aimed at amplifying the voices of residents in one of San Diego’s most diverse neighborhoods. (Read more)

That leaves Navarro, 28, in a bind: Get Angel care right away, or wait until they can get the same care?

“I told them to wait to schedule dental care for my son and to please hurry to work on authorization for my daughter,” said Navarro in Spanish.

The reason is simple: Angel was born here. Aneth was born in Mexico and came here as an infant. Angel is a citizen. Aneth and her parents are undocumented.

“I feel bad because there shouldn’t be a difference for children, because they don’t understand,” Navarro said. “I brought my daughter here when she was very young, and it’s not her fault she’s in this situation.”

Navarro’s family is one of 8.8 million nationwide in which some family members are here lawfully and some aren’t. They are what policy wonks call multi-status families — that is, within one family, there are people who are undocumented, people who are citizens, and, in many cases, people who are legal permanent residents.

It’s always been awkward for families like Navarro’s to navigate the health care system. But with health care reform, the gap between what’s available for Aneth and Angel may grow.

All over City Heights, people are preparing for the implementation of the Affordable Care Act. Nonprofits like Mid-City Community Advocacy Network are working to make sure that the hundreds of millions of dollars for health insurance exchanges will go to groups that meet residents on their terms. In City Heights, that’s speaking one of 30 languages or relating to residents from as many as 60 countries, according to the 2000 Census.

The two federally qualified health centers in the neighborhood, Mid-City Community Clinic and La Maestra Community Health Center, are trying to ramp up as quickly as possible to have the facilities and staff to serve local residents who will gain insurance under the law. But as organizations scramble to provide services for those with insurance, those without any coverage and without legal status may find themselves left behind.

ACA by the Numbers

Come 2014, when the individual mandate goes into effect and the exchanges go live, about four million California residents will gain access to some kind of coverage. That includes millions of legal permanent residents who are not citizens. People will get coverage in one of three ways under the ACA: the expansion of Medi-Cal; health insurance exchanges that will allow citizens and legal permanent residents to purchase health insurance with significant subsidies; and the mandate that requires people to buy individual health insurance or face a tax penalty.

But the law isn’t perfect. For one thing, legal permanent residents who have been here fewer than five years will be required to buy health insurance under the individual mandate but won’t be eligible for the exchanges or expanded Medi-Cal services until they’ve been here five years.

Then there are the undocumented immigrants who now have insurance through their employers — about 40 percent of undocumented adults. If those employers decide to farm out health insurance coverage to the exchanges, immigration status could cause those families to lose coverage.

Immigrants who pay taxes with a tax ID number or a false Social Security number may choose to pay the penalty for not buying health insurance rather than raise suspicion about their immigration status.

There will still be three million uninsured California residents after the ACA goes into effect in 2014, said Steve Eldred, program manager for The California Endowment. About two million of those are expected to be undocumented.

On the one hand, undocumented immigrants aren’t beholden to the individual mandate. On the other, they don’t get benefits from the law, either. Their access to health care could actually get worse under the reforms. Because the ACA was designed to expand health coverage through Medi-Cal, it cut funding for hospitals that provide care regardless of insurance coverage, immigration status or ability to pay. Hospitals that get this funding, including Rady Children’s Hospital, expect the cuts to have an impact.

Right now, hospitals must provide emergency care to anyone who shows up at an emergency room in critical condition. But enforcement may vary after 2014, said Eldred. In San Diego, an area that “doesn’t have a history of encouraging services for the undocumented,” Eldred fears the worst.

“As there start to be discussions about where to put resources, there are not going to be as many people who are advocating for continuing that basic level of care,” said Eldred. “The political will to continue to address the legitimate health needs of [the undocumented] may not be as strong.”

Up until the 1990s, working-poor families like Navarro’s would have been eligible for Medi-Cal under federal law. In 1996, the federal welfare reform law eliminated Medi-Cal coverage for poor undocumented immigrants and restricted coverage for some legal immigrants to medical emergencies, immunizations and the treatment of communicable diseases.

Making Ends Meet

It's no surprise, then, that in the intersection between two contentious debates — health care reform and immigration reform — people like Navarro and other City Heights residents are caught in the middle.

In a neighborhood that is 44 percent foreign-born, immigrants run the gamut, from naturalized citizens to green card holders to the undocumented, a group that can include those with expired visas, those seeking asylum, those arriving via human trafficking or those simply without papers.

The good news is that immigrants are healthier than native-born Americans, the so-called immigrant paradox. Newly arrived immigrants usually live 25 percent longer than white native-born Americans and 43 percent longer than black native-born Americans. Researchers attribute this to healthier food choices and the fact that new immigrants must be healthy enough to make the trip.

Still, everyone gets sinus infections and injuries. City Heights offers three community health clinics, four dental clinics, four school-based clinics with two more in the works and several private practices appealing to immigrants and people with Medi-Cal. The vast majority of City Heights residents is on Medi-Cal or has no access to insurance.

The sheer number of residents means that health care needs eclipse providers’ ability to respond, said Zara Marselian, director of La Maestra.

“We could set up, easily, three more dental clinics and we’d still be booked,” she said. “It’s the same thing with physical health care.”

Because of this backlog, the neighborhood’s clinics often find themselves packed. Waits can last hours. For some City Heights residents, it’s not worth it, and they defect to clinics outside the neighborhood that don’t charge.

For Enrique Baheña, food and rent come first. A day laborer, Baheña is currently fighting for back wages from a construction job that landed him in the hospital with a broken nose and fractured tooth that laid him out from work for two weeks. Some months, he only brings in $750 for himself and his wife, who are undocumented, and his three kids, who are citizens. When he gets sick, Baheña travels 10 miles to UC San Diego’s student-run free clinic.

The staff doesn’t ask for his personal information. They don’t ask his immigration status. They dispense medications for free.

“You go to the clinics here,” he said in Spanish, “and it’s very, very complicated. They want your address and a lot of information, and then they want to mail you a bill. But I can’t pay.”

Community clinics charge on a sliding scale, anywhere from $35 to $50, not counting the cost of lab work and prescriptions.

“Thirty-five dollars can fill a fridge,” said Adriana Huerta, a public health educator with the Employee Rights Center, who sat on a couch next to Baheña as he sorted through his medications. “A lot of people feel insecure giving so much information to a clinic, because of their legal status. So they go to emergency rooms instead.”

For her part, La Maestra’s Marselian acknowledges the need for more staff to cut wait times. But funding is difficult to come by. Additional funding for community clinics, which was supposed to be included in the ACA, was slashed by Congress in 2011. About 10 percent of La Maestra's funding comes from the federal government, and another 50 percent comes from Medi-Cal and Medicare. Many patients are private payers, on the sliding scale. Everyone on staff is doing double duty as eligibility workers to try to find one of the 28 funding streams to pay for poor patients’ care.

And it doesn’t help that politics has seeped into the work. During President George W. Bush's administration, Marselian remembers applying for a foundation grant. After writing the grant and filling out the forms, she got an “apologetic” call in which a staffer explained that some people at the foundation didn’t want to pay for care for the undocumented. Could they start tracking who is undocumented and who isn’t, to appease donors?

Marselian declined. “We don’t keep that kind of information; it’s not a prerequisite for getting treatment,” she said. “Any human being who appears at our door and needs help gets help, wherever they’re from. That’s our business. Our business is not helping Homeland Security do their work.”

She paused and added, “How do you educate people? How do you build compassion in people’s hearts who only have compassion for certain kinds of people?”

Caught in the Middle

It’s in this environment that Navarro is fighting to keep her children’s care equal. It’s not easy. When Angel had stomach pain a little while ago, Navarro got him to Mid-City Community Clinic right away. The doctor determined he had a hernia, and just like that, he had an appointment at Rady Children’s and then surgery. He recovered just fine.

With an onsite clinic at her elementary school, Aneth is getting preventative and follow-up care once unavailable to her because of her immigration status.

When Aneth gets a urinary tract infection, a recurrent problem, she waits for the family to pull together the co-pay for Mid-City, along with the cost of antibiotics. The bright spot for the family came when the children’s school, Central Elementary School, opened a clinic in 2010. Open part time and available to all students and their siblings under age 19, the clinic is staffed by La Maestra and Mid-City doctors and nurse practitioners. Unlike the community clinics, the school clinics are quiet and uncrowded. The services are free.

“At first, I was unable to believe it, because I didn’t understand. It was the same clinic — still Mid-City — but when I started bringing my daughter there, they didn’t charge me,” said Navarro. “Here, I brought Aneth in two days ago and told the clinic that she was feeling bad, and they … gave her the health care she needed.”

But serious issues remain. A few months ago, Aneth came home from school in a foul mood. Generally a happy child, on this day, Aneth was nearly despondent. She’d had enough, she told her mother. She was tired of it.

“It,” it turned out, was teasing from other kids for her speech impediment. The little flap of skin that holds Aneth’s tongue to the bottom of her mouth is too short. When she speaks, she can barely move her tongue. Her words come out slurred and muffled. Some kids are not kind.

“She came home very sad and … ” Navarro paused. “And she told me on that day that she hated this life and she didn’t want to live.”

Recently, doctors at the school clinic told the family about a minor surgery that could allow Aneth to enunciate clearly.

Aneth’s eyes lit up, Navarro recalled. “Mommy, am I going to get a surgery?” Navarro recalled her daughter asking. “I’m going to get a surgery that will help me?”

“Yes, yes. Perhaps,” Navarro hedged.

“I don’t want to give her any illusions,” Navaro said, “until we know firsthand that it’s something she can acquire.”

The Cost to Us All

Even if you don’t care about Aneth’s struggle, consider your bottom line, said Eldred of The California Endowment. American health care is the most expensive in the world, costing an average of more than $8,000 per person a year, partly because of a system where the only care everyone is guaranteed comes from the emergency room — the most expensive care available. The New England Healthcare Institute estimates we spend about $32 billion a year for chronic, non-urgent health care in emergency rooms.

Undocumented immigrants aren’t the only ones who use the emergency room, of course. Four out of every five emergency room patients are citizens and green card holders who have insurance.

Alejandro Raya is one of them. Raya, 41, has been in the U.S. legally for 24 years, working mostly as a landscaper around San Diego. He’s barrel-chested, with a broad, fleshy face and dark eyes fringed with pouches of skin common among the stressed and the sick.

Raya is both. In December, Raya had been on disability for six months, after having his toe amputated due to out-of-control diabetes. Raya admits he’d been having symptoms for a few years. Swelling and dizziness would come and go. He was thirsty all the time.

But because he was still able to work, Raya did. He ignored the problems.

It wasn’t until his toe was too purple and swollen to remove his work boot that his family pushed him to go to the emergency room. He did, and he left two days later with antibiotics, diuretics and directions to follow up at a clinic. Eight days later, he felt so bad that he left work early and headed to the clinic — which promptly sent him to the emergency room. There, he woke up without his big toe and with diagnoses of diabetes, hypertension and high cholesterol. He left the hospital a week later with medications for his chronic conditions and another directive to visit a primary care doctor for ongoing treatment.

When he finally did make that appointment — months later, after his medications were gone and he was using his sister’s insulin — he discovered that the clinic didn’t take the Medi-Cal HMO to which he’d been assigned. They asked him to switch insurers and come back in 30 days.

The system, said Raya, is baffling. For years, he rarely went to the doctor because he didn’t know he could sign up for Medi-Cal. Once the hospital signed him up, he didn’t know how to figure out which HMO covered him or who his primary care doctor was. He turned to Huerta at the Employee Rights Center, who tracked down the information and made an appointment for him.

“Imagine me being here legally for 20-some years — I didn’t know what programs were available to me or how to approach my options,” he said. “And now imagine my family, who are illegal, and they’re even afraid that immigration is going to get involved if they go to get benefits of any kind.”

Indeed, Raya should have known the swelling and thirst were serious. Three years before, his sister, Isabel, had couldn’t stop vomiting. The whole family — all of whom besides Raya are undocumented — urged her to go to the emergency room. She hesitated. She was so used to not going to the doctor for fear of someone finding out her immigration status, but the vomiting wasn’t stopping. Finally she went, and discovered that her symptoms were the result of diabetes that was so out of control that her kidneys had shut down. Isabel is 33.

Hospital staff enrolled her in emergency Medi-Cal and instructed her to start dialysis. A year after that, Raya’s father, Juan, was also placed on dialysis; later, his mother, Maria Elena, followed suit. Unlike most immigrants, Raya’s family came here sick. But they didn’t know it. They’d spent all their time working, and in their native Mexico, they’d visited a curandera, a folk healer, not a clinic.

“The doctors said if they didn’t do dialysis, they’d be dead in three months,” Raya said. “They didn’t want to do it, but all the family put pressure on them, saying, ‘This is a difficult thing, but you’ve got to do it, you’ve got to do it.’”

Raya’s parents and sister now spend hours every Monday, Wednesday and Friday having the toxins filtered from their blood — at an average cost of $37,000 a year. The cost is paid for by Medi-Cal.

And Raya’s family members are among the lucky ones. California is one of only three states that uses its own funds to pay for outpatient dialysis. Most states require patients to go to an emergency room, because then the federal government will pay.

The Rayas’ illness is a financial hardship on taxpayers and the family alike. Before their illness, the Rayas’ focus had been work. But now, he said, it’s survival. Out of 10 people in the household, only two are currently working.

It tears Raya up that he’s not one of them — his foot is still swollen, making hours on his feet as a landscaper impossible. Still, he’s been offered a way out of the financial burden. Another one of his sisters volunteered to have him and his daughter move in with her. But he won’t do it.

“I can’t do that,” he said. “I can’t leave my parents without my support, my portion of the help.”

Heather Boerner is a health journalist based in San Francisco. She wrote this story with the support of the Dennis A. Hunt Fund for Health Journalism, a program of the USC Annenberg School of Journalism’s California Endowment Health Journalism Fellowships. Megan Burks contributed to this report.

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