Two more arrive. A gray-bearded man with a pirate bandana steps from the shelter of his Subaru. A sunken-cheeked woman rushes up on her bike.

“Woohoo! We have a full car!” the driver says brightly after they’ve all climbed aboard. The riders smile back, some with a hint of resignation. It’s time for the weekly trip to the clinic in Mad River, about 30 miles down a winding mountain road near the Trinity Alps. The tight twists and turns are hard on the stomach, but even harder on the joints — especially if you have chronic Lyme disease, as more than a few of these riders do.

Jeff Clarke, the 58-year-old in the black bandana, has Lyme, acquired long ago from deer ticks that dwell in the region’s sprawling forests. But today he’s going to ask about a lump that’s been growing in his left breast. It’s starting to hurt, and he’s worried. His fellow riders list their own ailments matter-of-factly: asthma, dental decay, diabetes, drug addiction, heart disease and much more.

They wouldn’t be making this trip if they didn’t have to. In Hayfork, “we’re down to the remnants of the medical personnel,” says Clarke, a well-spoken musician with a love for science, cats and NPR. “It just came to the point where if I needed to deal with anything important I just felt much more comfortable going over to Mad River.”

Like so many isolated American towns, Hayfork has lost its vitality and much of its youth to bigger places. For all its tree-lined ridges and breathtaking views, Hayfork is well beyond the tourists’ byways — more than an hour from the city of Eureka on the west and Redding on the east. It’s a 45-minute drive just to Weaverville, the tiny Trinity County seat.

Whether they’re too poor to leave or charmed by the star-filled skies, Hayforkers have mostly made their peace with isolation: No retail stores, theaters, museums, fancy restaurants – and Internet access that is iffy at best.

“We were always 20 years behind everything,” says Shannon Barnett, a 41-year-old a former school teacher who grew up here. “We were all just fine with that. Now it’s different.”

She’s referring to the exodus of basic health services.

For decades, Hayfork had been fortunate. Well after the rise of urban health systems and their intricate business models, it had a tight-knit local “system” founded on the simple, generous commitment of two people: a general practitioner and a pharmacist.

“He was everybody’s doctor,” Barnett says of Dr. Earl Mercill, a GP who moved up from the Central Valley almost 50 years ago. “You never thought about going to anyone else.”

But it’s been years since Mercill retired. Now his clinic is staffed by doctors who rotate in from Weaverville once or twice a week, and otherwise it’s run by physician’s assistants. There are no hospitals for miles, though helicopters swoop in for emergencies when needed.

The Mad River clinic isn’t an ideal alternative.  It’s bigger than Hayfork’s and offers a wider array of services but it’s still staffed mostly by physician’s assistants and about an hour away by bus. It’s so backed up with patients it can take weeks to get an appointment, Clarke says.

In these tiny towns of California’s  far north, lacking insurance is not the biggest obstacle to care. Even before Obamacare took effect, a, roughly the same as in the rest of the state. A good number are on Medi-Cal.

What’s ailing these people is geography – that, and poverty. The median household income in , well below the , according to the American Community Survey.  Unemployment is extraordinarily high – estimates range between and . Many people lack a sturdy car to drive, or even money for gas.

In the federal government’s parlance, Hayfork is a “medically underserved” community – one of roughly 3,500 in the country and 170 in California, according to the federal government’s latest numbers. By definition, these areas have too few primary care providers, high infant mortality, pervasive poverty or a significant elderly population. Some are islands of deprivation within otherwise well-stocked urban areas. Others are dots on the map like Hayfork, far from where doctors and medical services are clustered. According to the National Rural Health Association,

Health care is available on the other side of the mountain, says Greg Schneider, a 65-year-old writer and band mate of Clarke’s. “The problem,” he says, “is getting there.”

Lumberjacks and Janes

In 1967, long after its rise and fall as a gold-mining town, Hayfork struck it rich. That’s when a friend told Mercill, then practicing in tiny Arvin, Calif., that an even tinier town south of Oregon badly needed a doctor.

Mercill was intrigued. He visited a few times with his large and growing family (he and his wife Marianne eventually raised eight kids, four of them adopted).

Hayfork was still a mill town then, filled with lumberjacks and janes, as the women were known. It had restaurants, shops and even a thriving art and music scene.

After praying on the decision, the family moved up north, built a house and settled on 40 acres outside town. A few months afterward,ÌýMercill opened his clinic downtown.

He was beloved almost from the beginning. He made house calls in the middle of the night — sometimes walking over precariously narrow log bridges or shuttling to his patients’ homes by snowmobile.

He delivered babies by flashlight after storms knocked down power and waited by his patients’ bedsides for hours until they felt better, sometimes charging little more than a slice of cake.

“If they didn’t have any money, I saw them,” Mercill recalls, frail now, but with a keen long-term memory. “If they could pay later, fine. If they didn’t, they didn’t. I never went hungry.”

Mercill couldn’t do everything, of course. If a patient needed a specialist or surgery he sent them to colleagues in Redding or Weaverville. Sometimes he drove along with them and assisted in the operating room.

In 1982, pharmacist Gerry Reichelderfer came to Hayfork, also on a friend’s recommendation. He fell in love with mountain life, and took over the drug store next to Mercill’s clinic.

Reichelderfer lived just seven minutes and a single stop sign away from his shop. He’d drive over and open up anytime people needed a prescription. If they couldn’t pay right then, he’d put it on an I.O.U. or let it slide.

The men joined forces, talking daily by intercom. The partnership would last nearly two decades.

A Turn of Fortune

In the late 1980s, the logging industry started to crumble. Partly because of pressure from conservation groups, the mills in Northern California dominoed shut. By the time Hayfork’s mill closed in the early 1990s, the population — never higher than the low thousands — had dwindled.

“When all the workers left, they took all the families and young children,” says Rick Simmons of the Trinity County Historical Society.  “What was left over was people unable to go anywhere.”

Homelessness, poverty and drug addiction took hold. An underground market began to sprout around marijuana — bringing drifters, seasonal trimmers and unofficial security forces to town. The forests became a dangerous place to wander.

Clarke, a runaway and hitchhiker in his youth, was in some ways typical of Hayfork’s new generation. He arrived in the 1980s, in the clutches of methamphetamine addiction, a habit he picked up in the bars where he played guitar. For years, he landed jobs and lost them — working as a wood chopper, sandwich maker and cabinet craftsman. He started seeing a woman he met in rehab, then split with her, but not before they had a daughter. They named her Stormy Brooke. He gained custody and lost it more than once.

He wanted to get sober for her, if not himself. Seeing no hope for professional help locally, he drove to a clinic in Weaverville. His first need, he told the counselor at the desk, was housing — a roof over his head.

“He repeatedly said that’s not my job,” Clarke says.

Clarke stopped trying to seek addiction treatment after that. “Most of the progress I’ve made in the last few years has been behind the 12-step stuff I do,” he says.

The meetings at Hayfork’s Solid Rock Church saved his life, he says. He goes every Monday and has been sober 10 years.

His health is ok, considering.  He lost his teeth. His bottom denture wore out long ago and his top one is breaking. He has high blood pressure, a detached bicep and hepatitis C from a jailhouse tattoo. He developed chronic Lyme disease because he wasn’t treated right away with antibiotics.

Nowadays, Clarke lives behind the Trinity County Fairgrounds, in a two-room trailer next to the town cemetery. Supported by $889 a month in disability insurance, he spends his time organizing 12-step meetings, reading library books and science magazines, and volunteering as a sound engineer for gigs at a local coffee shop. On good nights, he gets paid a little. Most important to him, he says, is staying as healthy as possible so he can look after 23-year-old Stormy and her 2-year-old son, Tony, who lives with his dad.

Stormy, a tall beauty too insecure to know it, cuts herself and has made several attempts at suicide. Her porcelain arms bear the scars.

“She has no self-esteem,” Clarke says. “She has no faith in love, or trust for any other human beings. She has some real darkness inside her, you know? I’m sure I’m responsible for a majority of that.”

In June, during a fight with her father, she had what Jeff thought was a stroke. En route to Redding in an ambulance, she started seizing so they put her on a chopper. At the hospital, the doctors said she’d had a stress-induced seizure.

After three hours, her doctors released her with a prescription for klonopin to control her seizures and panic attacks, and told her to follow-up with her primary care physician.

“I had to laugh,” Clarke says. “We’re in Hayfork!”

Like losing a limb

Dr. Mercill hung onto his clinic as long as he could, finally selling it to a doctor based in Weaverville. That doctor recently sold it to Trinity Hospital, part of the Mountain Communities Healthcare District, also based in the city.

The saddened community dedicated a clock to him in the town center.  “It was like a limb being cut off,” Barnett says. ”I know at first I didn’t have another doctor for a long time. Other people didn’t either. They bounced around for a long time.”

Every once in a while, Mercill treated people who asked, but he’s 91 now, and hasn’t done that in years.

Two of Mercill’s kids grew up to be medical professionals – one a dentist, another a physical therapist–but they live and practice in bigger towns. The other children also moved away. One son, Steve, moved back from Southern California 21 years ago to care for his mother before she died. Now he’s caring for his dad.

Reichelderfer carried on at his pharmacy after Mercill retired, lending credit to Clarke and others when he could. But the economics of health care shifted under his feet. His business began to struggle. The reimbursements from insurers were too low, he said, and the clinic next door — a long time ally — began referring patients to bigger stores in Weaverville.

In Trinity County, where Hayfork is located, medical services overall became hard to find. In 2012, according to the Office of Statewide Health Planning and Development, there were currently practicing, roughly one per 1,200 residents. Statewide, the ratio is roughly 1 per 300.

Specialists like dentists and psychiatrists are nearly non-existent here. That lack of specialty care – particularly in mental health – wears on some residents. Stormy Clarke says that when she feels a panic attack or depression coming on, she simply tries to breathe deeply and distract herself by keeping busy. She also has a medical marijuana card and smokes regularly.

A county behavioral office offers counseling in Hayfork, but a counselor isn’t there every day and in-person visits are by appointment only. Sometimes the most expedient treatment comes in jail — Clarke calls it the “nudge from the judge.”

He mentions an acquaintance named Robbie, who suffers from paranoid schizophrenia. Since being released from jail, he’s been off his meds, Clarke says. He walks up and down Hayfork’s main strip along Highway 3, muttering to passers-by about the many people who are after him.

“In cities, you have places like outpatient programs for these types of people to go to, every single day,” said Julie Bussman, a psychologist at the Mad River clinic. “It’s a real hardship for people who are severely mentally ill to live out here because there’s not a lot of resources.”

In August, Bussman quit and moved back to Minnesota, leaving no psychologist for miles.

Back on the Bus

After the bus pulls into the Mad River clinic — a remodeled blue cottage that used to serve as a the local forest service office — the riders start their wait. They are used to it by now: The kids pull out games and books; the adults chat in the waiting room or by a weathered picnic table on the back lawn.

Everybody has to be seen before the bus can head back.

On this day, Clarke is among the first in line. The physician’s assistant on duty examines his chest lump and advises against a biopsy, an invasive procedure, because he wants to run more tests. Clarke takes the news with some concern.

“I was pretty freaked out. I went in there with the agenda of the biopsy. They wanted to explore other options,” he says afterward.

By the time the bus gets back to Hayfork, it’s mid-afternoon. He drives back to his trailer, frustrated and spent.

A few Tuesdays later, he takes the bus back to Mad River and is referred to a specialist in Weaverville.

It is another two months before he learns the lump is a side effect of the medications he’s taking — a hypothesis he’d mentioned earlier to physicians and their assistants in Hayfork and Mad River.

Now he has to start thinking about replacing those dentures, which means another bus trip — or several – around the mountain.

The Final Loss

Reichelderfer, 81 and in failing health, began looking earlier this year for someone to buy his store. He looked for months. Even the independents weren’t interested, in part because pharmacists’ family members weren’t keen on moving to Hayfork.

With great sadness, he shut his doors on September 18.

“I wish I could have been able to sell it to somebody,” he said, “for the convenience of the people.”

From now on, Hayforkers will have to get a ride to Owens Pharmacy in Weaverville or to Walmart or CVS in Redding.

It took only a few days to board up a drug store open for 32 years.

It’s a relic now, standing just yards from the clock the town dedicated to Dr. Mercill, with his years of service gratefully memorialized on a plaque.

Heidi de Marco and Carol Eisenberg contributed reporting.

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He’s also a diabetic, and gives himself insulin injections instead of relying on an automated insulin pump, which he says could be hacked.

“I’d rather stab myself six times a day with a needle and syringe,” Radcliffe recently told security experts meeting near Washington, D.C. “At this point, those devices are not up to standard.”

Concern about the vulnerability of medical devices like insulin pumps, defibrillators, fetal monitors and scanners is growing as health care facilities increasingly rely on devices that connect with each other, with hospital medical record systems and —directly or not — with the Internet.

Radcliffe made headlines in 2011 by showing a hackers’ convention how he could exploit a vulnerability in his insulin pump that might enable an attacker to manipulate the amount of insulin pumped to produce a potentially fatal reaction. Now he talks about going without a pump to raise awareness about the potential for security lapses and the need for better engineering.

While there have been no confirmed reports of cyber criminals  gaining access to a medical device and harming patients, the Department of Homeland Security is investigating potential vulnerabilities in about two dozen devices, according to . Hollywood has already spun worst-case scenarios, including a 2012 episode in the Homeland series portraying a plot to kill the vice president by manipulating his pacemaker.

“The good news is, we haven’t seen actual active threats or deliberate attempts against medical devices yet,” said Kevin Fu, a University of Michigan researcher who has made his career testing the vulnerability of medical systems.

The guidelines, which aren’t binding, say that when seeking approval for a new device, manufacturers should detail cybersecurity threats they considered and create better ways to detect when it might have been hacked.

They should also build in protections, such as limiting access to authorized users and restricting software updates only to products with authenticated coding.

While a good start, some security experts say the guidelines should be binding. Others fear that giving them the force of regulation could be more harmful because they would become outdated quickly.

Nonetheless, the FDA’s guidance has, in effect, changed the conversation among device makers from, “‘Do I believe this is a real threat?’ to ‘What do I have to do to satisfy the FDA?’” said Hoyme.

By the end of the year, the agency is expected to issue similar recommendations for devices already on the market.

Common Vulnerabilities

One reason many existing devices might be vulnerable is they run on defunct operating systems like Windows XP, which Microsoft stopped supporting in April, meaning there won’t be any new security patches. Other, newer devices may have built-in passwords that are difficult to update. Gaining access to them can be fairly easy which could make them more vulnerable to attack, researchers say. In addition, sometimes, a password is intentionally disabled so it’s easily accessible to medical staff in an emergency.

Hackers can also get into some inadequately protected hospital systems when staff members click on links in emails, not knowing they contain malicious code. Once transmitted to a hospital’s intranet, that malware could find its way into unprotected device software and cause malfunctions, said Hoyme and Fu.

“If cyber criminals decide they can hack into a device to get health records, they won’t think about whether they’re messing with device performance: They’re going after the money,” Hoyme said.

Security experts warn that some of the same design flaws that make medical devices vulnerable would also make breaches hard to track.

“If your iPhone is compromised, it’s a lot more straightforward for someone to determine if it’s been tampered with. We’re not there yet” with medical devices, said Billy Rios, a former Google software engineer turned security consultant.

He describes how he was able to buy a secondhand EKG machine, used to measure the heart’s electrical activity, for just $25 online. Some infusion pumps and patient monitoring systems go for less than $100. That makes devices more readily available to those who want to figure out vulnerabilities to exploit.

“The effort required is so much lower,” he says. “That’s not a good position to be in.”

What Hospitals Are Doing

Hospitals are loathe to talk about device security publicly, but many are working to ensure their systems are stronger.

In a two-year test of information security, experts working for Essentia, a large Midwestern health system. For instance, they found settings on drug infusion pumps could be altered remotely to give patients incorrect doses, defibrillators could be manipulated to deliver random shocks and that medical records could be changed.

Stephen Curran, acting director of the Division of Resilience and Infrastructure Coordination with the Department of Health and Human Services, could not say how many facilities have a chief security officer or someone in charge of cybersecurity.  But even small facilities have some relatively simple options for boosting the security of devices on their networks, he said, including “routine backups and patching of the systems and the use of anti-virus firewalls.”

Still, while “we definitely see a trend in hospitals to improve their security,” says Mike Ahmadi, global director of critical systems security at cybersecurity firm Codenomicon, vendors have to do more to engineer security.

“The bigger issue is that vendors are not held accountable for writing insecure code,” says researcher Rios. “There’s no incentive…so they don’t invest.”

Pressure On Vendors

A few hospitals, including the Mayo Clinic, have started to write security requirements into their procurement contracts.

At the University of Texas MD Anderson Cancer Center in Houston, any new software application has to be approved by the hospital’s security team, headed by Lessley Stoltenberg, chief information security officer.

He says device makers also will have to meet a slew of security requirements: Can the device be encrypted?  Is there a unique identification for users? If the vendor is hosting the device, what does their system look like in terms of firewalls and other protections? Will the manufacturer provide up-to-date security patches?

Some companies, like Ahmadi’s Codenomicon, specialize in selling software to detect software bugs that could lead to security holes.

While Codenomicon has a number of device makers as customers, those are a fraction of the in the U.S., some of which may not be doing even the most basic testing. Most vendors are small — 80 percent have fewer than 50 employees — and many are startups without the capital to invest in a security expert.

So, could hackers target infusion pumps or ventilators?

“Is it possible?” Stoltenberg mused. “Yes. Is it likely? No.  No device in the world is absolutely 100 percent secure.”

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The assessments, which also include data on selected medical groups, are available  in multiple languages.

The state timed the release of this year’s report cards to coincide with the second round of open enrollment in Covered California, the state’s online health exchange, which kicks off Nov. 15. Several plans included in the report cards are offered on the exchange.

“Consumers can make more informed health care decisions,” said California Health and Human Services Agency Secretary Diana Dooley during a conference call with reporters. “I hope all Californians who are faced with competing health plan enrollment choices during the weeks ahead will find these report cards to be a helpful resource.”

This is the 14th year the agency has generated health care quality report cards. This year, the organization aggregated claims and electronic medical record data and patient satisfaction surveys for the state’s biggest insurance plans and more than 200 medical groups. In total, these organizations serve upward of 16 million Californians, officials said.

The report cards rate 10 health maintenance organizations, six preferred provider organizations and 200 medical groups on a four-star scale. All HMOS rated “good” or “excellent” on their ability to provide quality clinical services compared to national standards. Ratings from patients on their experience  were not as favorable. For instance,Ìý all HMOs were rated “poor” in terms of “getting services easily’” with the exception of Kaiser Permanente. (Kaiser Health News is not affiliated with Kaiser Permanente.)

All PPOs rated “good” or “fair” on the quality of clinical services. Only Aetna and Cigna received “poor” ratings in “getting services easily.”

The report cards are part of a larger national push to bring greater transparency to the health care industry and help consumers choose services that best fit their needs.

The California health care report cards are freely available to all consumers online and through mobile applications.

“The availability of data … allows us to create products that allow people to make better decisions in almost every circumstance,” said Bryan Sivak, the chief technology officer at the U.S. Department for Health and Human Services. And as a result, insurance companies “will have to compete on the things that matter to people.”

Experts say that while patient satisfaction measures may provide insights into bedside manner, they may not not provide reliable information on the quality of care.

The California health care ratings don’t include information on individual doctors. Instead, they provide a snapshot of a health plan’s or medical group’s strengths and weaknesses. More granular data on individual providers could be useful, experts say, especially if physician reviews of other physicians are incorporated.

“I would put ton of credibility on that,” said Scott Decker, president of health care transparency company HealthSparq, earlier this year.

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A study published today in the journal Obstetrics & Gynecology suggests that robot-assisted surgeries to remove ovaries or ovarian cysts were more expensive and had more complications than traditional minimally invasive surgeries.

Removing ovaries and cysts with the help of a robot cost about $2,500 and $3,300 more, respectively, than laparoscopic or “keyhole” surgeries. That can add  upward of 80 percent to the cost of a surgery.

What’s more, women whose surgeries had been performed with the help of a robot were slightly more likely to have complications such as a bladder injury, bowel obstruction or excessive bleeding.

The study “really questions the utility of using robotic-assisted surgery,” says Dr. Jason Wright, the chief of gynecologic oncology at Columbia University and the lead author.  “More studies need to be done” he said, “before it’s accepted as the standard of care.”

The data didn’t offer any clue as to why the complications arose. But in the past two months, there have been reports of software glitches, battery malfunctions, and difficulties in seeing through the robotic system’s lens, according to the U.S. Food and Drug Administration’s Manufacturer and User Facility Device Experience database, which documents issues with medical devices. In some cases, these problems occurred after the patient had been put under anesthesia. Last year, the “freak incidents” during which robots wouldn’t let go of tissue or accidentally hit patients on the operating table.

Wright’s study looked at nearly 90,000 women 18 years and older who’d gone under the knife between 2009 and 2012 to have ovaries or cysts removed, and compared the cost and safety of robotic surgeries to those which used laparoscopic methods.

It’s not the first time researchers have come to such conclusions. Wright’s team reported similar trends in a study of robot-assisted hysterectomies in 2012.  Some researchers also have voiced  about possible underreporting of complications resulting from robotic surgery.

Despite the extra cost and complications, the researchers found that the use of robots for these kinds of procedures is on the rise. Just 3.5 percent of all ovary removals were done with the help of robots in 2009, the year following the introduction of robot-assisted surgery into billing codes. By 2012, that had risen to 15 percent. For cyst removals, the trends are similar. In 2009, 2.4 percent involved robots. By 2012, it was 12.9 percent.

The increased use of robotic surgery was more pronounced in the western and southern parts of the country and among insured patients, according to the study. From the data, the researchers couldn’t reach any conclusions as to why.

Because the database measured hospital costs, the study provides insights into how the rise in robotic surgeries might affect hospitals’ bottom lines.

“The big take-home point is that from a hospital’s perspective, it’s much, much, much more expensive,”  Wright said. That could mean that hospitals could start to think twice about using the technology, especially when complications and readmissions are factored in. With the Affordable Care Act, there is an increased focus on outcomes, and reimbursements are starting to reflect that.

Analyzing more recent data will be important for hospitals, which are penalized for readmissions under the nation’s health law.

In the meantime, the findings highlight the need for more regulation of robotics in health care settings because of the complications and costs,Ìý according to Ryan Calo, a law professor at the University of Washington who was not involved in the study.

“Hospitals and the government need to be experts at assessing when something is going to be ready for prime time,” said Calo, who recently authored a Brookings Institute report calling for a government agency to oversee robotics. “Robotics and software will do wonders for healthcare. I absolutely believe that to be the case, but I just don’t know when.”

Robotics has been of interest because in other industries, such as manufacturing and retail, it has helped bring down costs.  In health care, however, the advent of new technologies hasn’t always accomplished that, experts say.

A recent report by the Robert Wood Johnson Foundation found that the “dominant driver” of long-term health care costs in the U.S. was medical technology. That’s because there are “few requirements that effectiveness be demonstrated before technologies are used broadly.”

To be sure,  suggest that robotic surgery is beneficial in certain situations, but researchers say those benefits can sometimes be hyped.

Until better standards are set in place,ÌýWright said, “Patients need to understand the risks and benefits of different procedures… The newest, most high-tech thing that’s available isn’t necessarily the best.”

DanielaH@kff.org

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California is among the first states to launch such teledentistry services, which are intended to increase the options for patients in remote and underserved areas. Other states, like Oregon, Colorado, Hawaii and West Virginia, are interested in creating their own teledentistry programs but are farther behind, advocates for the projects said.

The bill, signed by the governor over the weekend, also expands the types of procedures hygienists and certain assistants can perform without onsite supervision by a dentist — deciding what X-rays to take, for instance, or installing temporary fillings that help prevent decay. The hygienists and other workers will consult with a dentist remotely, sharing records online but will refer a person directly to a dentist if more sophisticated  procedures are needed.

The legislation will take effect on Jan. 1.

Expanding teledentistry statewide will increase Medi-Cal costs minimally in the short-term — by upward of $500,000 a year, according to a State Assembly’s Appropriations Committee fiscal analysis. If teledentistry takes off, the costs could be higher.

Already, the Medi-Cal budget for dental services is slated to grow from $682 million to roughly $940 million by June 2015, thanks to legislation signed in June 2013 that brought back certain dental benefits for adults.

Dr. James Stephens, a Palo Alto dentist and president of the California Dental Association, said that teledentistry could save money down the line, however.

“That’s the real key. It’s a way of getting people who are outside the system into the system,” he said. “Preventive care costs so much less.”

The newly signed law is the culmination of years of work and research by hygienists,Ìýdentists and patient advocacy organizations across the state. About five years ago, Dr. Paul Glassman, a dentist at the University of the Pacific in San Francisco, started the pilot to show that teledentistry could provide a means to improve access at low costs.

“We’re very very excited. It’s a great ending to a long, long adventure here,” Glassman said. “The next challenge is to be able to spread this system.”

According to Glassman, as many as 50 percent of consumers eligible for dental services through Medi-Cal don’t get care. The idea is to deploy hygienists and dental assistants to schools, nursing homes and other community organizations where underserved populations gather. Glassman and other advocates say that will ease transportation, financial, language and cultural barriers that typically keep people from accessing treatment.

Telemedicine in general has been gaining traction, thanks in part to an increasing number of small Internet-enabled medical devices and consumer health trackers as well as growing interest among venture capitalists.  The federal Affordable Care Act has emphasized the use of digital technologies to improve care and cut costs. Recently, a was introduced in the U.S. House of Representatives that would allow accountable care organizations to get reimbursed for and use telemedicine more widely.

“Technology has really allowed things that weren’t possible before,” said Shelly Gehshan, the director of the children’s dental policy team at the Pew Charitable Trust. “But it’s not like flipping a switch.”

Before the promise of teledentistry can be borne out, the state still has to figure out the billing mechanism and payment structure for telemedicine-enabled services. Glassman acknowledged this could be a topic of debate: Providers will want to bill at the same rates as for in-person consultations, while Medi-Cal might opt for lower rates to control costs.

Professional organizations still need to build programs to train hygienists and dental assistants on taking X-rays by themselves, applying temporary fillings, and working as part of a teledentistry team. The bill spells out the type of training that will be necessary.

DanielaH@kff.org

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An Italian composer and self-described computer geek, Mancinelli said he was surprised to find there wasn’t a clear way to upload a copy of his O-1 visa. The document, which grants temporary residency status to people with extraordinary talents in the sciences and arts, was part of his proof to the government to that he was eligible for coverage.

So, the 35 year-old Sherman Oaks resident wrote in his application that he’d be happy to send along any further documentation.

Months went by without word from the state. Then last week he came home from vacation to find a notice telling him he was at risk of losing the Anthem Blue Cross plan he’d purchased.

On Sept. 4 — five months after the end of open enrollment — Covered California sent out notices in English and Spanish to 98,000 families who bought plans on the exchange alerting them that their legal status could not be verified. As many as 50,000 households still remain unverified and must meet a Tuesday deadline to prove that they are citizens or legal U.S. residents, or risk losing coverage.

If deemed ineligible, the letters said, applicants could be liable to repay the tax credits they received, plus interest.

By the time Mancinelli got his letter, he had only days to comply.

“It’s more and more pressure,” said Mancinelli. “I understand they have lots of applications to process, but on the other end, if a document is missing, the computer should have a red flag…Don’t wait nine months.”

Each person in a household needs to submit  proof such as copies of a U.S. passport, a certificate of naturalization, a U.S birth certificate plus a driver’s license, or a state-issued identification card. Nonpermanent residents like Mancinelli have to submit certain immigration documents.

In some cases, the problem was not missing documents but something as simple as using a nickname instead of a full name or inverting the first and last names on an application, according to Covered California spokesman James Scullary. When it came time to match those names to information in federal databases, inconsistencies arose.

Other applicants reported technical problems uploading documents or lacked scanners to make digital copies.

Glitches exist at the other end of the verification process as well. When officials have gone to confirm an applicant’s information by comparing it to records in government databases, they’ve received vague messages about why verification was not possible, consumer advocates say. It can be unclear whether the problem is the result of inconsistencies or because a database is down, according to advocates.

“This is such a difficult situation for consumers to be put in,” said Sonal Ambegaokar, a senior attorney at the National Health Law Program, a national health advocacy group.

For immigrant families, this could add to language and cultural barriers that have complicated enrollment, advocates said. Many fear the information they provide Covered California could be used by immigration officials to deport relatives, even though the state has repeatedly said that is not the case.

Other applicants are baffled as to why they need to resubmit documents they claim they have already provided Covered California, don’t understand what documents are required, or simply don’t yet have them in hand. In some cases, it can take months to get a lost social security card or permanent residency card replaced.

Scullary said he couldn’t say yet how many applicants had been deemed ineligible for coverage because Covered California is still looking through documents and helping people through the process.

Covered California has added a Frequently Asked Questions webpage to help people better understand the process. information on what documents they can submit and who is eligible, namely U.S citizens, permanent residents, refugees, and lawful temporary residents.

In addition to the written notices, “customers would have also received an email reminder that went out this week to impart on them that this is something they need to be aware of and take care of,” Scullary, the Covered California spokesman, said.

Mancinelli says he never received one.

Some nonprofit and advocacy organizations are translating the notices to other languages, like Korean and Vietnamese, or sending out notices of their own asking people if they received a notice from Covered California and informing them where they can seek help.

“There are efforts to try to get as much information out to the community as we can,” said Cary Sanders, the director of the Having Our Say Coalition in Oakland, California.

Covered California is allowing consumers to submit documents after the Sept. 30 deadline, but there is no guarantee these can be processed in time to avoid losing coverage after Oct. 31.  

“Certainly if someone is able to prove they’re lawful but they’re unable to do it until after 30th, we’d work with them and their insurance company to see what we could do to keep them covered, but they do run the risk of having some sort of gap in their coverage,” Scullary said. 

People deemed ineligible can contest the decision, though that process has not been finalized, according to Scullary.

The state has dedicated  a service center in Fresno to verifying documents. All the call centers have been trained to take questions from customers regarding the verification process, Scullary said.

But telephone wait times can be upwards of an hour. Chat volume went up more than 40 percent in August, probably due to consumer concern over the verification process, according to documents from Covered California.  Nearly two thirds of calls were abandoned in August, compared to a third the previous month. Up to 15 percent of callers got a busy signal.

Mancinelli tried calling several times. Once he got through he was ultimately directed elsewhere, to the nonprofit Health Consumer Alliance, for help. Rather than wait on the phone again, he waded through the information on the Covered California website himself. Finally, he found a clause saying he could upload any documents not listed on the site under the module for U.S. passport – which he immediately did.

He said he simply wants to do the right thing.

Anna Gorman contributed reporting.

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This post has been updated to reflect the subject’s 2016 insurance coverage. Click here to read.

Leslie Ziegler was, as she puts it, “uninsurable.”

The 31­-year­-old high-­tech entrepreneur and consultant was diagnosed in her 20s with ulcerative colitis, a chronic disease associated with inflammation and ulcers in the large intestine. It has no known cause or cure. Treatment includes expensive medication and, sometimes, costly surgery.

Soon after the diagnosis, she left her job at a startup to help start Rock Health, a San Francisco-based program that mentors budding health companies and provides early funding. The new job didn’t come with benefits, so she looked at her health­ insurance options on the individual market. They were, in a word, bleak.

One carrier told her they’d be more likely to cover her if she’d already had a colectomy, a surgery to remove part of the colon. They didn’t want to be on the hook for that procedure, which can cost thousands of dollars. The others just told her they couldn’t help.

“I was denied coverage by every single major insurance company,” she said.

At the time, she was able to get on her partner’s insurance plan, but when they broke up, she was on her own for coverage. Demoralized by her past encounters with insurance companies, she waited for open enrollment to start for plans on Covered California, the state’s health insurance exchange.

Now, because of the federal Affordable Care Act, insurance companies can’t refuse people coverage or charge more because of pre­existing conditions, and consumers have more flexibility in how they shop for health insurance.

Signing up for Obamacare has freed Ziegler from needing to be tied down to a job or a relationship to get coverage for her chronic condition. Before, she always had to factor in her potential out­-of­pocket healthcare costs when considering taking on new projects that didn’t offer insurance, although she’s healthy otherwise she says.

She now the founder of an insect­ protein­ based food startup dubbed Bitty Foods and an advisor to several health care companies.

“I’ve always felt a little chained to jobs because of my condition. And having the freedom and peace of mind to know that I have access to healthcare any time I need it…is a wonderful thing,” she says.

Recently the White House launched #GeeksGetCovered, a campaign specifically targeted at Silicon Valley ­types. Some preliminary evidence suggests that being able to access affordable health insurance through avenues other than an employer could boost entrepreneurship.

Health reform hasn’t changed the reality that most Americans receive insurance through their employers, who largely dictate which insurance plans employees can access. But it did help ease the shift away from group plans brokered by employers to an online individual market where consumers can directly purchase plans that fit their specific needs.

People like Ziegler represent the future of the individual health ­insurance market in which consumers increasingly will shop for deals aided by government-­run marketplaces like Covered California or HealthCare.gov or private brokers.

At the same time, more data will become available data on pricing and outcomes, insurance and government experts say. If people don’t like the plan they buy initially, they’ll switch, just like they might ditch a shoddy cellphone carrier.

“The availability of data…allows us to create products that allow people to make better decisions in almost every circumstance,” says Bryan Sivak, the chief technology officer at the Department for Health and Human Services. And as a result, companies “will have to compete on the things that matter to people.”

Like many technologically inclined patients, Ziegler is generating her own data, equipping herself with a bevy of apps, gadgets and services — including activity trackers and food logs. She’s been able to use that data to pinpoint the foods that make her bowel flare — arugula, dairy, beer, and rice, to name a few.

“I’m really, really healthy. I self­-tracked myself for a year to figure out what caused problems. I’m like a highly motivated person and none of that mattered [before] when it came to actually getting an insurance policy,” she said.

Soon after open enrollment started in October, she started looking for a plan that would cover medication for her ulcerative colitis, which can cost hundreds of dollars per prescription, and give her access to a gastroenterologist.

Her experience on the Covered California website was good, she says. It took her about an hour to zero in on Blue Shield plan and sign up. She’s paying $400 a month.

Later, she found out her gastroenterologist, who she’d been with for five years and had diagnosed her condition correctly, didn’t take her new plan. She’d spent hours researching her options, but the information on which specialists were available under Blue Shield plan wasn’t clear or easy to find on the company’s website, she says.

“It was really upsetting,” she said.

She was in luck, however. One of her clients is a new organization called Better, a subscription­based health “personal assistant” service that helps consumers navigate the healthcare system online. Though the service, she found a new specialist and got help filling her prescriptions. The transition has been seamless, she says, because Better took care of transferring her electronic medical records to her new provider.

Despite the initial hassle, the Affordable Care Act and her online “personal assistant” have been life­ changing, Ziegler said.

“There’s no way, I would be able to have this degree of flexibility to work with so many companies if I didn’t have it.”

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HAYFORK, Calif. — For almost 21 years, Steve Mercill has lived on Doctor Lane, an unmarked, unpaved street off Hyampom Road, about two miles from the center of this tiny mountain town nestled in northern California’s redwood forests.

Doctor Lane is easy to miss, except for a white bridge that marks its start. It was a gift from the town to honor Mercill’s dad, Earl, who for more than 35 years was Hayfork’s doctor. It replaced a makeshift log walkway mill workers laid down years ago so Dr. Mercill could get across the creek to go to work.

Now, the bridge’s upkeep is one of Steve’s chores. He moved here from Napa with his wife and children in 1993 to care for his aging dad and to manage the family’s house and the sprawling property that surrounds it.

Mercill, 59, is one of a growing number of baby boomers leaving their jobs to care for elderly parents, who generally are living longer because of medical advances. Like many of these workers, whose efforts are believed to save millions of dollars in nursing home costs, he’s uninsured.

Before California opened it’s subsidized insurance exchange, about one in three home care workers lacked health insurance, according to the Paraprofessional Healthcare Institute, a New York-based policy organization. It’s unclear how those numbers have changed.

For Mercill, insurance coverage has nearly always been beyond his grasp.

His dad pays him a couple of thousand each month. Steve Mercill’s wife, Mary Elaine, works as a special education aide, bringing their income to about $60,000 a year – but Mercill says it’s not enough to cover him and his youngest daughter, 22, who is a college student.

Mercill has been self-employed or worked jobs, like construction, that didn’t offer health insurance, for most of his life.

Now his household income is too high for Medi-Cal, the free California insurance program for the poor and disabled.

Theoretically, he’s a candidate for subsidized coverage under Covered California, the state’s subsidized insurance marketplace. But when he tried to enroll earlier this year, he couldn’t overcome the technical challenges.

By his own admission, he’s not computer savvy, plus Internet service is temperamental here, and he doesn’t get it at home. Mary Elaine tried to help him by using a computer at her school, but the website wasn’t working well – a problem common throughout the state at the time. She also had some security concerns.

“It popped up saying ‘security risk’ and there was red flashing. I was afraid of doing it that way, so we tried calling,” said Mary Elaine, who also says she’s not good with technology. Their experience with the call center wasn’t much better — the wait was long and the site kept crashing while they were on the line. So they gave up.

Now, she worries that if something happened to her husband they would be on the hook for the bills. For basic care, they’ve relied on their son, who’s a physical therapist, in the past. He helped his dad cope with an injured achilles tendon, for example. But Mercill thinks he probably needed surgery.

For minor procedures, they used to turn to his dad, but Earl Mercill doesn’t practice anymore. The clinic he built in town has been sold off to a regional hospital and is too expensive, Mary Elaine and Steve say. So Mercill’s closest option is a clinic in Mad River, a town about an hour’s drive away on a windy two-lane road.

“I feel terribly guilty that I have insurance and my family doesn’t, but we’re going to try again,” said Mary Elaine, referring to open enrollment for Covered California in the fall. “I’m hoping we can find something through Obamacare that….we can afford.

Mercill and his wife are keeping their fingers crossed that he won’t need expensive medical care between now and October.

As his dad has gotten older and less independent, Mercill said he’s had to give up side jobs he had in town teaching physical education and doing construction. Earl Mercill, 91, is still in relatively good health but has battled prostate cancer, suffered a heart attack and had heart surgery. Recently, he fell off a chair and broke his arm.

Steve’s glad to spend time with his father, but the job can be tough and isolating, he says.

He tries to stay busy by chopping wood, gardening and playing music. That helps keep him from feeling depressed — sometimes more successfully than others. Mercill used to binge-drink, and though he admits he’s had some slip-ups, he’s been able to stay mostly clean because of the support of his family, especially his dad, he says.

Every day around 8 a.m., Mercill walks from his own small white house up the driveway to the brown two-story house where his father lives. He cooks meals and cleans the house, with Mary Elaine’s help. If his father is ill, he bathes and dresses him, helps him use the bathroom and tucks him into bed. When his dad is in good spirits, the two garden together, read the Bible and sing hymns. On Sundays, they go to church.

“It’s not totally my cup of tea — caregiving — but my dad’s done a ton for our whole family, and I’ll do anything [for him] till the day he dies. Whatever it takes,” he says. “He’s got a good sense of humor. If it wasn’t for all that I wouldn’t be able to do it.”

Mercill added that his father has always wanted to die peacefully, at home.

A nursing home “would be a curse of death to him,” Mercill said. “I can’t do that emotionally. If at all possible we’re trying not to.”

2015 Update

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The state also will be trying to help about 1.2 million Californians renew health plans they received thanks to the nation’s Affordable Care Act during the inaugural enrollment period last fall. The numbers do not include  who signed up for Medi-Cal, the state’s health insurance program for the poor.

The renewal process hasn’t been finalized, but beginning sometime in early October, customers who bought plans through Covered California will get letters explaining the details, a Covered California spokesman said. People will have a chance to switch plans, and the state will re-examine consumers’ eligibility for government subsidies.

The state’s outreach efforts include a $46-million radio, TV, print, and social-media ad campaign that will target and feature African Americans, Latinos and Asians who have benefited from access to health insurance. Some ads have already started running in English and Spanish throughout the state. Ads in Asian languages are set to begin next week in the Los Angeles, Bay Area and Central Valley markets.

The campaign, dubbed “I’m In” in English and “Tengo un Plan” in Spanish, will continue to be all about “telling stories about what’s happening in local communities,” said Peter Lee, Covered California’s executive director. It borrows from a narrative-focused advertising trend that has worked well in other industries.

Lee also announced that $14.6 million in new public funds for clinics, churches and other community-based organizations will be available to use to educate people and enroll them in health insurance. Several representatives of the more than 220 grant recipients said they would be able to undertake or expand in-person assistance and other services. The grants will supplement $33 million in government funds already available for outreach.

The state is “doubling down” on its efforts in areas where enrollment wasn’t as high as advocates would have liked, including in Southern California’s Inland Empire, the Central Valley, certain parts of Los Angeles and some rural areas, Lee said.

“It won’t be easy. In many ways it’s going to be harder this year than it was last year,” Lee said.

As in the first phase, success will hinge on reaching out to people who may not understand what insurance is all about. For example, of those eligible for government subsidies through Covered California, 56 percent haven’t had insurance for at least two years, and 15 percent have never had insurance, he said.

DanielaH@kff.org

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“I felt a knot in my brain. I didn’t know where to turn,” recalled Cruz, a Mexican immigrant who speaks only Spanish. “I didn’t have any idea how to help her.”

No one in her low-income South Los Angeles neighborhood seemed to know anything about autism spectrum disorder, a developmental condition that can impair language, learning and social interaction. Years passed as Shirley struggled through school, where she was bullied and beaten up. Now 9, Shirley aces math tests but can barely dress herself, brush her teeth or eat with utensils.

Shirley is like many autistic children from poor families: She hasn’t gotten much outside help. The parents often lack the know-how and means of middle-class families to advocate for their children at schools and state regional centers for the developmentally disabled.

A new initiative seeks to help level the playing field. , thousands of children from low-income families who are on the autism spectrum will be eligible for behavioral therapy under Medi-Cal, the state’s health plan for the poor.

California is among the first states to respond to a recent rule by the U.S. Centers for Medicare & Medicaid Services that requires the therapy to be covered, when deemed medically necessary, as part of a “comprehensive array of preventive, diagnostic and treatment services” for low-income people 21 and under. (Medi-Cal is California’s version of Medicaid.)

This type of treatment includes the sometimes costly “applied behavioral analysis,” which uses intensive drills and rewards to teach kids how to communicate and interact socially.

In California, a huge percentage of the population that stands to benefit is Latino. About a third of beneficiaries speak Spanish as their primary language, yet historically their communities have been underserved because of a shortage of Spanish-speaking providers and meager outreach and education efforts.

Taking the lead

California, however, is ahead of many states: It already has programs in place that cover a portion of autistic kids through public school districts and the California Department of Developmental Services. Although several states, including Louisiana and Washington, have taken early steps to make behavioral therapy for autism, others offer little or no public coverage for it.

Roughly 1 in 68 kids in the country has been diagnosed with autism spectrum disorder, according to the federal Centers for Disease Control and Prevention.

“For as long as I can remember, when a family called me for help, I had to ask them what kind of insurance they had. If they had Medi-Cal, there wasn’t much I could do to help them,” said Kristin Jacobson of Autism Deserves Equal Coverage, a Burlingame, California-based advocacy group. “Now they’ll have access to this treatment that can help these children reach their potential.”

At least, that’s the theory. In practice, many details remain to be worked out.

Among the unsettled questions is what rates will be paid to providers. “In every state, it’s going to be critical that rates be sufficient” to cover high-quality applied behavioral analysis, said Daniel Unumb, the executive director of the Autism Legal Resource Center at Autism Speaks, a national advocacy group.

“Otherwise, they will not attract sufficient providers and there will be huge problems with access.” On the other hand, some officials warned that Medicaid programs must be on the alert for providers who might misdiagnose or over-prescribe services in the interest of greater profits.

The challenge is that clinicians don’t yet fully understand autism or the amount and type of treatment from which different children will benefit most, said Matt Salo, the executive director of the National Association of Medicaid Directors. States are still “trying to get a handle on what is this all going to mean. Is this going to be an open ended entitlement to a very nebulous set of services that could continue forever or a more specific, targeted intervention?” he said.

Controlling Costs

California will seek to contain costs by setting fixed rates for care, under a managed care model, officials said. Even so, some observers remain concerned that the influx of thousands of kids newly eligible for autism treatment could overwhelm an already-strapped system.

Last year, the state Department of Developmental Services (DDS) spent roughly $88 million on behavioral treatment for about 7,500 children believed to be eligible for Medi-Cal. The state Department of Health Care Services, which runs Medi-Cal, won’t speculate on how many kids may sign up for the treatment for the first time as a result of the new rule on Medi-Cal coverage – but advocates say the state could be covering between 4,000 and 6,000 additional children.

Most of the kids expected to benefit have been eligible for Medi-Cal for some time – so, for them, the state can’t draw the blanket federal subsidies offered under the recent Medicaid expansion provided for in the nation’s health law. The federal government will cover just half the costs; California will have to absorb the rest.

The state will most likely cover any new expenses with money from the general fund, said Dylan Roby, a health care economist at the University of California, Los Angeles’ Fielding School of Public Health. If that runs dry, “they would need to pay for it by moving funds around, cutting existing programs, or getting additional appropriations from the state legislature and governor later in the year or as part of the next budget package,” Roby wrote in an email.

Still unclear is how the new system of Medi-Cal coverage will mesh with the bureaucracies and funding already in place for treatment of children in public schools and through DDS regional centers. Some advocates expect these systems to remain in place for the near term, but state officials said they could not yet discuss their plans.

Not A Panacea

For poor families, the coverage does not remove every obstacle. Some families can’t take the time off work to attend behavioral treatment regimens, which often require an adult to accompany a child. It can be a commitment of up to 40 hours a week– the equivalent of a full-time job.

Perhaps one of the most challenging issues for state officials will be reaching out to poor families — making sure they understand the disorder and don’t delay diagnosis or treatment out of any sense of denial or stigma.

For many years, Cruz rationalized Shirley’s behavior: she was her youngest, the last of four. She had been babied; she was naturally quiet. When the DDS regional center that diagnosed Shirley inexplicably stopped calling about providing treatment, Cruz accepted it without pushing back.

A conversation with a friend from church about a year ago woke her up. They were talking about how Shirley’s schoolmates had spit on and hit her. Cruz confided that she loved her daughter, but she could not accept that she might have this condition. Her friend chided her, saying that what Shirley needed was her mom’s unconditional support; otherwise Cruz was no better than the bullies.

It was a harsh thing to say. But it also marked a turning point. Since then, Cruz has pored over legal and scientific texts and vigorously pressed her local DDS regional center to help her daughter. She’s dropped off letters spelling out the treatment she believes Shirley is entitled to, complete with the legal codes. She’s even taken a bus with other advocates to Sacramento to push for better access to treatment for all autistic children.

But until a reporter mentioned it this month, Cruz was unaware that Medi-Cal – her daughter’s insurance plan—would soon cover behavioral therapy. Cruz only wishes she could have gotten services for Shirley earlier—her daughter might be better off. Still, Cruz is hopeful the new rules will finally give Shirley a better chance at succeeding in school and making friends.

“It makes me happy … It’s important for her life, for her future,” Cruz said. Right now, “our children are losing out a lot.”

DanielaH@Kff.org

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