Carol Hardaway woke in the morning and padded over to her 8-month-old son's crib. A towheaded blue-eyed boy peered up at her, smiling, enveloped in one of her old T-shirts. "Are you ready to get up?" she asked. She reached down into the crib and wrapped her hands around his torso to lift him and was surprised that she couldn't. Even as she saw her right hand make contact, she couldn't feel Chris' warmth or his softness. It was as though her fingers belonged to someone else. She picked him up with her left arm and went about the morning, readying herself for work tending bar at TGI Fridays. Hardaway had an unsettled feeling in her stomach. That day, January 17, 1986, is a date as easy for her to recall as her own birthday.
Behind the bar, the suspicion that something was very wrong only grew. She picked up a mixing tin with her right hand and dropped it. She knelt down to pick it up and dropped it again. And again. Her arm felt like she had slept on it. She informed the manager that she had to go. "Something is wrong with me." She checked into a hospital in Plantation, Florida. The doctors suspected stroke and ordered a battery of tests. They performed a spinal tap to check for meningitis and insisted she remain under observation. She called her parents and asked them to pick her son up from the sitter.
After a week, the hospital released her. She was negative for meningitis, stroke or cerebral palsy, but the numbness and listlessness had spread to her entire right side. The diagnosis was that her symptoms were psychosomatic.
Another three weeks passed before life and sensation returned. She went back to work, moved on from the strange episode and raised her son. But some four years later, when she was in her early 30s, her perfect eyesight degraded to near legal blindness. Her peripheral vision was vanishing. Hardaway was passed from an optometrist to an ophthalmologist to a retina specialist, each as confounded by the sudden deterioration of her sight as the last. Then a neural optometrist ran Hardaway through an MRI and showed her the folds of her brain, rendered in shades of gray. She pointed to tiny black spots, lesions where the insulation on the wiring of her brain had corroded, and diagnosed Hardaway with multiple sclerosis, a degenerative disease of the axons, which transmit signals from the brain to the rest of the body. There is no cure, and someday it could get worse.
"I started crying. I didn't go through the pity party, but I grieved. It was life-changing. I was diagnosed three days before my son turned 5," Hardaway says.
After a while, the episode passed much like the last. That was the pattern — brief flare-ups followed by long remission. Eventually, the disease attacked her short-term memory so that there were times when she couldn't remember if she'd brushed her teeth. Muscle spasms caused her "breathtaking pain," and she experienced fatigue that sleep couldn't remedy. The symptoms came and went, and Hardaway lived in between them the best she could.
In 1994, she married the man who provided tech support for TGI Fridays' phone system, and they set up a successful installation company. They bought a beautiful old house for next to nothing in Celina, in Collin County. Chris grew into a young man who knew when to straighten out his mother's curling toes and arching ankles as she had one of her spasms.
On a recent afternoon, 59-year-old Hardaway, a tiny fireplug of a woman with a loud, hoarse laugh and a devious sense of humor, tottered across the creaking wood floors on recalcitrant legs, leaning on walls, chairs and tables as she made her way through the home. In the last six months, her illness hasn't gotten better like it did before. Accumulating scar tissue on her brain from decades of flare-ups has created a permanent and steadily worsening condition. She's falling too much. For the first time, she's using a cane. She hasn't been treated since her diagnosis and hated the side effects of the steroids her doctor gave her.
Hardaway knows she needs treatment but hasn't had health insurance since she left TGI Fridays. When she and her husband ran their business and times were good, they just paid cash when they needed to see a doctor. They've since divorced. Hardaway has waited tables at a local diner over the last few years when she feels up to it, but now that her legs won't cooperate, she's living on what's left in her retirement account. In her condition, insurance is prohibitively expensive, even with the state-administered high-risk health insurance pool. That's about to be terminated anyway, and the insured will be rolled over to the federal health insurance marketplace created by the Affordable Care Act.
Since Hardaway has no income, she won't be able to afford even that. She exists in what's known as the "Medicaid gap." In Texas, Medicaid has typically covered the completely disabled, those above the age of 65 and living on a low income, pregnant women and low-income families — categories Hardaway doesn't fit into. Nor is she eligible for the Obamacare insurance subsidies available to people whose incomes place them just above the federal poverty level. Even with her retirement savings, she wouldn't qualify. That's why the health care law expanded Medicaid for people like Hardaway, who live below 100 percent of the federal poverty level, earning less than $12,000 a year. The cost of the Medicaid expansion would be covered by the federal government for the first three years and gradually phased back to a 90-percent contribution, with 10 percent of the cost paid by the state.
But a legal challenge mounted by Texas and other states resulted in a U.S. Supreme Court ruling that allowed them to opt out of the expansion, excluding Hardaway and this poorest segment of the population from coverage under the Affordable Care Act. Texas' decision not to expand Medicaid has left more than 1 million people in the gap, uninsured.
It is at least one of the reasons why folks from her Methodist church were dropping by, helping box her dishes. Her pool table and old piano, left over from better times, were for sale. Celina High School's football squad had been over to carry the things she couldn't. She was moving to Maryland, in part to be near her son, who works for a freshman Democratic congressman from Florida. She's also going because she's afraid. "If I can't get on Medicaid and get medication, I won't be walking in six months," she says. "Mama's going downhill fast." She'll be eligible for Medicaid in Maryland, which chose to expand the program and accept about $2.5 billion in matching federal contributions over the next six years.
The signature legislation of Barack Obama's presidency — perhaps the most ambitious social welfare program since the Social Security Act was signed into law in 1935 — was intended to cover the roughly 15 percent of Americans who can't afford health insurance and have no real access to preventive medical care. But before the bill was even signed into law, it touched off one of the most acrimonious debates the country had ever seen. Nowhere has the resistance been stiffer, or more successful, than in Texas, where state officials have refused to perform nearly every administrative function required to implement the law. Texas was the setting for a scandal that tainted the federally funded navigators who help people sign up for health insurance. And it erected regulatory roadblocks for these navigators at the busiest, most critical hour so far, when open enrollment is drawing to a close.
Yet Texas stands to gain the most under the health care law. Most of the jobs borne of the state's famed job-creation engine are in the service and retail industries, which generally don't provide health insurance. And its regulation of insurance on the individual insurance market is hands-off, leading to high premiums for those who need it most and can least afford it. As a result, Texas boasts the highest rate of uninsured residents (about 23 percent, or 6.2 million) as well as the highest number of uninsured children (some 852,000).
That doesn't mean Texas won't do everything in its power to thwart the health care law. As in any battle, there are the fighters and then there are the folks who get caught in the middle.
The United States spends more per capita on health care than any country in the world — about 17 cents of every dollar of gross domestic product — but ranks just above Cuba in terms of average life expectancy. There are legitimate arguments for opponents to make about Obamacare's shortcomings: That its roll-out was a debacle. That's it's a giveaway to the private insurance industry, which will gain millions of new customers, many of whom will be subsidized by the federal government. That it does little if anything to address some of the main drivers of health care inflation. These legitimate critiques don't get much of an airing in our national discourse. "Socialized medicine" would sum it up, despite the fact that the bulk of Obamacare's beneficiaries will end up in the private market.
In that way, it's part of a long tradition of hand-wringing over large new social programs. With the passage of the Social Security Act, one senator asked, "Isn't this socialism?"
And in 1961, as Congress debated Medicare, a young Ronald Reagan warned that if it passed, Americans would "spend our sunset years telling our children, and our children's children, what it once was like in America when men were free."
The current debate, however, has been a thing altogether different. Congress didn't shut the government down for more than two weeks as a gambit to stop Medicare, and today no avenue of attack is too small or too large. Take, for example, Get Covered America, the national campaign of the nonprofit Enroll America, which put me in touch with Carol Hardaway and is raising awareness about Obamacare. It has been the subject of controversy over multi-million-dollar donations it received from H&R Block and the Robert Wood Johnson Foundation. Senator Lamar Alexander, a Republican from Tennessee, accused Health and Human Services Secretary Kathleen Sebelius of pressuring other health groups to make contributions to the campaign.
But Sebelius had little choice. The education campaign presented another opportunity to obstruct. A number of Republican-led states, including Texas, refused to set up their own insurance market exchanges, forcing the feds to do it for them. The cost of implementation has risen beyond the budgeted amount, leaving nothing left over for promotion. Congress has thus far flatly refused Sebelius' requests for additional funding. So, she raised the money herself, much like former President George W. Bush's administration did for its campaign to promote the Medicare Part D drug program.
Even so, when it comes to Obamacare, perception is everything. No claim is too outlandish to be believed. Anecdotes become universal truths, and not just in the darker corners of radio and the Internet. Sometimes they latch on and drive policy.
Don't ask Lawrence B. Jones III about strategy. He can't have the subjects of future undercover stings getting wise to his tactics. For now, just know that he wore a hidden camera, strode into the Urban League of Greater Dallas last fall, asked a few questions and single-handedly shaped the national dialogue about Obamacare navigators.
Knowing Jones' background and his short experience in the world so far, you wouldn't peg him as a conservative activist. And yet he was the perfect man for the job. He's only 21 years old. He grew up in Garland, born to a 16-year-old mother and a father almost as young, who raised him in a stable, God-fearing household. They weren't wealthy, but his foundation was solid, and he became a preternaturally serious young man: a minister at age 14, a Junior Senator of Texas, Youth Mayor of Garland, power forward on the Garland High basketball team. He "retired" from the game, as he puts it, and became a student advocate. This was the kernel of Jones' political life. The students he advocated for were the kids who ended up getting kicked out of class every other day or appearing in juvenile court.
"We had students whose parents were addicted to drugs," he says. "They were failing because they were hungry. They showed me life isn't nice for everybody. It's no wonder why the education system is so broken. Homes are destroyed. Most of my students came from broken homes, single-parent homes."
The school district's trustees, who were all older than 50, were out of touch with the needs of these students, he believed, so after Jones graduated, he ran for an open school board seat at the age of 19. His platform went something like this: Who better to tackle the problems at GISD than a recent product of it? He ran an honest-to-God campaign, and he learned, he says, that politics was "slimy." "So many attacks. ... 'You're too young.'"
Jones lost with about 34 percent of the vote. He moved on to the University of North Texas, where he's double-majoring in criminal justice and political science. He wants to be a lawyer, but his ambitions don't end there. He'd always subscribed to a religious brand of social conservatism, incompatible, he believes, with Democrats. "Anti-religious, same-sex marriage, expansion of more abortion rights, Planned Parenthood. I'm against it all." But in college, he became a true believer in capitalism's ability to set men free. He staked yard signs for Ted Cruz's Senate campaign. He attended training seminars in Washington, D.C., for FreedomWorks, the powerful conservative organization funded by billionaire industrialist David Koch.
And that's where he linked up with Project Veritas and its founder, conservative agent provocateur James O'Keefe. O'Keefe made a big splash with a hidden-camera sting on ACORN, the community-action group that pushes for safe neighborhoods, affordable housing and voter registration in low-income, urban areas. ACORN is also something of a Republican bogeyman, routinely accused of voter fraud. In O'Keefe's undercover video, he appears in an introduction, dressed flamboyantly in fur and goggle-like shades as a cartoonish, backhanding pimp accompanied by a prostitute. Inside an ACORN office, he seeks advice about how best to shield his illicit income from the IRS. In the video, it appears as if the ACORN staffer is attempting to assist him. Its release unleashed a Republican furor. Congress yanked ACORN's federal grant, and it lost a number of its private supporters. The 40-year-old organization was forced to shut its doors.
The national media found out too late that the video had been heavily edited. O'Keefe did not in fact wear the pimp outfit during the sting. Worst of all, the staffer, Juan Carlos Vera, had called his cousin, a police officer, as soon as O'Keefe left. What sounded like complicity in the edited footage was actually the staffer pumping him for more information. He planned to turn him in. But the damage was done. Vera lost his job. ACORN was no more. And O'Keefe later agreed to pay Vera a $100,000 settlement.
This was small-fry compared to his work with Jones on Obamacare.
It is clear Jones has a future in conservative politics, is quite aware of the fact and has been praised in that way many times. "Are there people out there grooming me? Of course they are," he says. "Who wouldn't? They want people at the table who have a degree of a different experience in life." FreedomWorks wants minorities involved in a movement criticized for its utter dearth of diversity, he says, and Jones, who is black, has "always had a seat at the table."
He was familiar with the health care laws and their dangers when he met O'Keefe, he claims. As part of a school project, he read the Affordable Care Act from front to back. He didn't hate all of it. His mother has lupus, a chronic illness that causes her immune system to attack her body. Before Obamacare, he knows her insurer could have dumped her — that without the law, she might not be able to get insurance at all with a preexisting condition. There are aspects of the law worth preserving, he allows, but he was disturbed by what he found. "One thing that troubled me were the death panels. To sum it up, when you get old they can decide if you get medicine. I don't think government should be able to do that," he says. "One that really hit home was the funding of abortion. My mom could have aborted me when she was 16. But she made the right choice. What about all the religious organizations that own hospitals? You're going to tell them they have to perform this procedure?" (In fact, Obamacare eliminates lifetime limits and annual caps on benefits imposed by private insurers that have served as de facto death panels. And religious institutions have been given an exemption even from providing birth control.)
In Jones, O'Keefe had found his infiltrator. And so, we return to the Urban League of Greater Dallas. The office employs health care navigators, the federal grantees who guide people through the application and health insurance enrollment process. An older woman with short, snowy white hair and a zebra-print blouse, identified as Mrs. Dorothy, led him to her office. She explained she hadn't finished her training yet, but could probably answer a few of his questions until they were joined by someone with more experience. Jones tried to make conversation:
"You know it's just been really painful to see how these Republicans are just targeting this bill," he said.
"Mmhmm," she replied, her back to him as she dug through her files looking for the application forms. She got right to the point, asking whether he filed his taxes as a single person.
"I'm a college student, but I work for the university and I do, like, stuff there and stuff on the side. So ..."
"So you got combined W-2s?" she asked.
"No, because the other stuff I just, like barber or I'll go and clean houses and things like that, just to get extra money on the side, but I never filed that stuff on my, you know ..."
"When you file taxes?"
"On my ... file my taxes."
"You're supposed to file a percentage of it," Mrs. Dorothy says in a mildly scolding way.
"A percent?" Jones says and laughs.
"Mmmhmm, because you're making money on a cash basis."
"OK."
"Don't get yourself in trouble by declaring it now."
"Yeah, it didn't happen," says Lakisha Williams, another navigator in training.
"Exactly. So it's like 15,000 basically what I make with my job. That's what I normally file."
"That's it, because that's what you have records showing," Williams says. "Because if you show more than that, you open yourself up to an audit. Because the IRS has access to this information. That's how they determine what your eligibility is for HHS grants."
"OK, OK, OK, OK," he replied. "Ugh, I'm glad I came to y'all."
With that, Jones got more or less what he'd come for. It wasn't the raciest of scenarios, but it was enough to get Mrs. Dorothy and Williams decertified and suspended. And once it hit the Internet, they became tangible evidence of endemic Obamacare fraud. Senator John Cornyn called for an end to the federal navigator grant program, from which the Urban League of Greater Dallas had been awarded $376,000.
In response to Jones' investigation, the House Committee on Government Oversight and Reform held a rare field hearing in Richardson on December 16. "In Dallas, navigators have been caught on camera advising people to commit tax fraud by under-reporting income in order to gain higher subsidies. ... We cannot have a repeat of the ACORN-like activities," said Chairman Darrell Issa in his opening statement.
The potential for fraud and even identity theft among the navigators, the committee members warned, was evident. "Basically, we have people who aren't being vetted that are going to be accessing very sensitive information from families, about their Social Security numbers, about their income," said Representative Randy Neugebauer, a Republican from Lubbock. "If they want to use it in an inappropriate way, they could basically steal someone's identity."
As the repercussions of Jones' sting spread, O'Keefe has watched the fallout with something approaching glee. "The impact on the discussion alone, we generated over a million dollars of media coverage," he tells the Observer. "Something in excess of 50 or 60 local TV stations across the country ... and every station in Texas was talking about this. It provides people who don't necessarily have an opinion or who are for Obamacare — it provides evidence that this system is broken."
Navigators invariably were portrayed as poorly trained, fly-by-night identity thieves and accomplices to tax fraud. Perception is all the opponents of Obamacare needed.
Sandra Luz didn't have a routine doctor's visit until she was in her 20s. She got insurance for the first time through her husband's employer. Lucky thing, too, because that's when she learned she was diabetic. That she had gone through life without so much as a physical or dental appointment didn't seem odd to her back then. Having no access to health care was just a fact of life. Her mother didn't have health insurance until she was in her 40s. Again, the family lucked out, because her mother was diagnosed with cancer not long after. Luz knows better than most the potential of the unforeseeable to alter lives.
On a recent morning, she walked through the halls of the Community Council of Greater Dallas. She's the organization's lead navigator, federally funded by subcontract with the United Way of Tarrant County. She oversees 11 navigators who cover 18 North Texas counties. She got her start at Catholic Charities, which contracted with the community council. The folks running the organization liked Luz so much that they brought her on board, first as an administrative assistant. Like many of her colleagues, for years she helped families enroll in a health care program that covers children from low-income households. She's no stranger to health-privacy laws, the handling of sensitive personal information or the ins and outs of state and federal health programs.
The community council and the United Way of Tarrant County — the lead grant recipient in charge of navigators in Texas — conduct national background checks on their workers as a matter of course. They don't employ felons. They don't keep consumers' information after they've signed up for Obamacare.
Negative perceptions have nonetheless driven state-level regulation of the navigator program. Senator Kirk Watson, a Democrat from Austin, got a bill through the Legislature based in no small part on a provision that requires background checks. But at a December 20 Texas Department of Insurance public hearing on proposed navigator rules, he claimed the spirit of his legislation had been "distorted." Rather than helping Texans get insured, he accused TDI of erecting barriers. "... Given the current political environment, the proposed rules appear to have the intended effect of creating obstacles to accessing affordable insurance coverage," he told TDI in December.
The federal government requires 20 to 30 hours of navigator training. TDI proposed an additional 40 hours. State Representative Lon Burnam said he had obtained documents through an open records request that indicate the objective was partisan. "The Texas Department of Insurance has internal documents showing that it was political influence and not any rational process that decided navigators should be required to undergo 40 hours of training ..." he says, but he was informed by TDI's legal department that he can't release the documents.
The training alone could cost as much as $1,000 per navigator. Martha Blaine, executive director of the Community Council of Greater Dallas, says the requirements could cost her nonprofit an additional $25,000 it doesn't have. The final rules were released in late January and reduced the education requirement to 20 hours on top of what the feds require. But the time line for compliance is brutal. The fingerprinting, the extra background checks, the purchase of a $25,000 surety bond for each navigator and a TDI application, which could take two to three weeks to process, must all be submitted by March 1. After that, the navigators have until May 1 to complete a curriculum that hasn't been created yet. Further complicating matters, depending on the cost of compliance, navigator organizations may have to get permission from the U.S. Department of Health and Human Services to exceed their grant budgets. Amid all of this, March 31 marks the end of open enrollment, and the navigators are expecting a surge in last-minute applicants.
"There are still some difficult and potentially confusing provisions in here, especially regarding the time line for implementing these rules," Watson says in a statement provided by his office. "The deadline to sign up for health insurance through the federal exchange is near the time the rules will take effect. That puts a considerable responsibility on the Department of Insurance to process applications — and resolve any bureaucratic problems — very quickly."
There's a kind of irritable resignation among navigator organizations, an awareness that they've become a political football, and that TDI must inflict certain inconveniences on them. "They are asking us to duplicate things we have already done," Blaine says.
TDI has from the beginning had a tortured relationship with the Affordable Care Act. It took a million-dollar grant from the feds to set up a health insurance exchange in Texas. Then Governor Rick Perry announced that Texas would not participate. TDI returned all but $100,000. It received another $2.8 million grant to set up the Texas Consumer Health Assistance Program to help Texans find affordable insurance, fill out applications and fight denied claims. It held consumer education seminars all over the state. In 2011, Congress failed to pass a budget. When the gridlock eased, Congress didn't allocate the money for the program in Texas and everywhere else. Rather than finding an alternate source of funding like other states had, Texas got rid of it.
Another facet of the health care law requires the review of any insurance premium increase of 10 percent or more. If the increase can't be justified, states are required to take action against the insurer. TDI took another $1 million to conduct these reviews. Then, a year later, it announced that it had studied applicable state law and discovered that it had neither the statutory authority to prevent rate hikes nor the means to let consumers know about them. TDI has since created a space on its website for consumers to review the department's opinion on whether the rate increases are justified. But Texas' insurance regulator can't take any action against health insurance companies, even if it's apparent they're gouging Texans.
But it has been positively proactive in its regulatory oversight of navigators. Those like Sandra Luz will muddle through the background checks they've already undergone, and the extra training they don't really need, as open enrollment draws to a close and their offices are flooded with calls for assistance.
Jones was becoming a rising young star of the conservative movement. His undercover videos have minted his reputation. The navigator stings were followed by an undercover interview with Chris Tarango, communications director for Enroll America, the nonprofit spreading awareness about the health care law. Jones posed as the front man for a made-up political-action committee funded by a rich uncle. For more than an hour, he tried to convince Tarango to give him a list of potential voters who had expressed interest in enrolling in Obamacare. Tarango told him it could not be done.
"I understand that this might be a little bit messy, but my family, my ancestors worked so hard to get here," Jones pleaded. "And I am not ready to continue to let these people mess over us, to continue to ... These Republicans are worried about getting richer and richer."
The big catch — the allegedly incriminating admission — came when Tarango said he'd ask someone at Enroll America about it, though he seemed doubtful that it would work. In fact, he noted that even the act of accessing the information would set off alarm bells within the organization.
O'Keefe released a heavily edited tape with none of this context, and Tarango resigned. Jones has since ridden the FreedomWorks circuit of speakers, stumping for candidates like Katrina Pierson, who's running to the right of conservative Congressman Jeff Sessions. Have his investigations brought about the results he'd hoped for? No, he says, because Obamacare remains law.
And Carol Hardaway, the mother who woke one morning to find she couldn't use her right hand to lift her son from his cradle, now lives with him in Maryland. Over the phone, she said she was lining up temp work she could do without the help of her undependable feet. Her house in Celina sold, and she hopes to get a place of her own soon. This new life comes with new worries, except for one: She's qualified for Medicaid in Maryland. Soon, she'll be treated for MS. "It's the crux of everything. If you're healthy and you're young and things are hunky-dory, you're invincible. We all know that. We've all been there. Nothing's going wrong," she says. "But if you're not invincible — and unfortunately my disease makes me way more susceptible to stuff because my immune system sucks — then it becomes catastrophic and then what do you do?"
In her case, leaving Texas was the answer.
