When it comes to expanding health coverage to its poorest residents, California could be taking two steps forward and one step back.

Even as the state celebrates its enrollment of more than 2.7 million low-income Californians in Medi-Cal in 2014, it may drop an unusually high number of beneficiaries from its rolls by year’s end.

That is because Medicaid eligibility standards relating to income and household size changed under the Affordable Care Act, forcing the 8.6 million people who had been on the program before Jan. 1 to apply under the new rules. (Medi-Cal is California’s version of the federal Medicaid program.)

Beneficiaries always have to renew their coverage annually, and there is always some churn in enrollment as people’s circumstances change. But this year, the forms asked for a host of new information, and many more people than usual haven’t responded, according to state officials, county welfare directors and advocates.

In past years, depending on the county, about 20 to 40 percent of Medi-Cal beneficiaries do not renew their coverage. But this year, the numbers are running as high as 50 percent in some counties, according to state Health Care Services Director Toby Douglas. Los Angeles County reported 38 percent hadn’t returned applications sent in August, compared to 15 to 20 percent in previous years.

Although the state isn’t yet giving out estimates, advocates say this reduced response rate could translate into as many as a million or more additional people cut from the Medi-Cal rolls this year.

On Monday, the Western Center on Law & Poverty, along with several other advocacy groups, sued the California Department of Health Care Services in Alameda Superior Court, charging that Medi-Cal beneficiaries are being unfairly dropped from coverage. The groups are also applying for a temporary restraining order to stop the state from canceling coverage for Medi-Cal recipients who haven’t been properly notified.

The problem is coming to a head now in part because the state granted people a six-month grace period past their usual renewal dates to re-enroll. In November and December, many of the renewals are coming due – and those who don’t respond are being told they will be cut off.

“A lot of people will be getting a notice right before Thanksgiving telling them that they’re losing their Medi-Cal,” says Jen Flory, a senior attorney at the Western Center on Law & Poverty. “Our concern is that a lot of them don’t really understand what’s going on and haven’t had an opportunity to provide the adequate information.”

Recipients who do not return their packets and receive a termination can be reinstated if they send in their information within 90 days.

The California Department of Health Care Services declined to comment on the lawsuit. Before the suit was filed, Rene Mollow, deputy director of healthcare benefits and eligibility at the health services department, said that renewing Medi-Cal benefits “was always a very involved process.” This year, the department was under a compressed timeline to develop the new forms but worked to make the forms as simple as possible, she said. Next year’s form should be easier to use, she added.

“We do have remedies in place where people can come back into coverage,” said Morrow. “2014 was a year of change. Our goal here is to continue working with our counties and beneficiaries to make sure the people who are eligible retain coverage.”

Consumers can seek help by phone or at their local health department office, and the forms provide a number to call if the recipient speaks another language, Morrow said.

The California Department of Health Care Services sent everyone who needed to renew the necessary application in the mail, but advocates like Flory say people have struggled to complete it. The form is complicated, asks for information the recipients hadn’t provided in the past and is available only in English and Spanish.

“There’s a lot of confusion, and it’s a language access issue,” said Connie Lo, health programs coordinator at Asian Americans Advancing Justice Los Angeles. “Most of our clients are limited English proficiency. They don’t even know what these packets are for and why they’re receiving so many documents together that they can’t even read.”

“There’s going to be a lot of people who lose coverage. That’s bad for them, but it’s also bad for the medical program and trust in DHCS,” Lo said. “We had this big push to get people enrolled in health insurance this year, and now we’re just terminating people.”

Language isn’t the only barrier, advocates said.

“It’s a very confusing form even in English, and it looks very different from what it looks in past years,” said Cori Racela, a staff attorney at Neighborhood Legal Services of Los Angeles County, which runs a consumer helpline. “We believe it’s very burdensome to consumers.”

Flory said she doesn’t think the terminations are an accident. “When people fail to jump through these hoops to stay on the program, the state saves money,” she said.

The population who were already on Medi-Cal before Jan. 1 is a lot more expensive for the state to cover, she said. The federal government pays only half of their health care costs, compared to 100 percent of the costs for those who qualify under the ACA’s broader eligibility guidelines.

Some counties have been doing additional outreach this year to help people with previous Medi-Cal coverage renew in time. San Mateo County Health System director Iliana Rodriguez says the county has been working with health plans to call recipients, make robo calls in their primary languages and send out additional reminders.

“We’re leaving no stone unturned in terms of getting them in the door,” says Rodriguez, who adds that San Mateo is on track to hit about a 76 percent rate for Medi-Cal renewals this year.

Blue Shield of California Foundation helps support KHN coverage of California.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

A Los Angeles furniture store worker who had never had health insurance enrolled in a plan for $75 a month that will cover both him and his son.

An unemployed accountant in Charlotte, N.C., who tried and failed to sign up last year found coverage for $11.75 a month.

A self-employed house contractor from West Palm Beach, Fla., found a health plan that will cost him nothing.

They were among more than 100,000 Americans who signed up for coverage Saturday through the Affordable Care Act’s online insurance exchanges, which launched this weekend with far fewer problems and less fanfare than last year. Many people qualified for federal subsidies that kept their monthly premiums well under $100.

“The vast majority of people coming to the site were able to get on and do what they were intending to do,” Health and Human Services Secretary Sylva Burwell said Sunday on NBC’s Meet The Press, adding that 500,000 people had signed onto the website.

By most accounts, the federal marketplace that handles enrollment for 37 states ran smoothly — a far cry from last year’s disastrous rollout that turned www.healthcare.gov into an embarrassment for President Barack Obama, spurred several staff departures and made the site virtually unusable for two months.

State exchanges that had encountered big problems last year — including Maryland, Massachusetts and Hawaii—all reported no major issues this weekend.

Still, there were some hiccups, with consumers and enrollment counselors facing sporadic delays accessing the website to set up an account and buy coverage. Some of those who bought coverage last year had trouble getting into their accounts because they had forgotten their passwords.

Meanwhile, the insurance exchanges run by 13 states and the District of Columbia functioned well — with the exception of the one in Washington state, which was shut down Saturday because it was giving out incorrect subsidy information. The site was fixed and back online Sunday morning.

To give consumers assistance, enrollment events were held across the country over the weekend, at hospitals, clinics, churches, community centers, malls, libraries – even at the Rock and Roll Hall of Fame in Cleveland.

“It was awesome,” said Joy Floyd after she got help buying a plan for $11.75 a month at the Children and Family Services Center in Charlotte, N.C. She had tried and failed to sign up for coverage last year because of website problems.

Like most enrollees, Floyd will face additional cost-sharing as a result of deductibles and co-pays when she sees doctors, gets tests or buys prescriptions.

Uncertainties Ahead

Despite this year’s far smoother opening, the enrollment process continues to face plenty of uncertainties, including the response of a confused and still uninformed public, among them 20 million uninsured who did not enroll the first year; a shorter enrollment period and premium increases that many of the 7 million people who bought coverage last year will face unless they shop around.

Recent political and legal developments also cast a shadow, including a hostile GOP taking control of Congress in January and the Supreme Court’s decision to hear a challenge to the subsidies that millions of people have relied upon to reduce the cost of their coverage.

Ricot Telcy, 37, a West Palm Beach, Fla., security guard, knew nothing about the legal challenge, but was pleased to learn he and his wife could get coverage for about $300 a month—about the same price his wife had been paying for herself.

Across town, at an event at a medical society office, Rick Pierre, 40, enrolled in about an hour in a plan that will cost him nothing in premiums because he qualifies for a large subsidy. “I’m very excited,” he said.

The Obama administration expects about 9 million people to get coverage on the exchanges before open enrollment ends Feb. 15. The marketplaces are a cornerstone of the health law because they help expand health coverage to millions of Americans who do not get health coverage at their jobs. More than eight in 10 people buying policies last year received a government subsidy to lower their premiums.

People must enroll by Dec. 15 if they want their coverage to start in January. In most states, those who bought coverage last year will be re-enrolled automatically if they do nothing by that date – a scenario that could result in higher costs since most premiums and benefits are changing.

The exchanges and the publicity around them also spurred millions of people to sign up for Medicaid, which has expanded eligibility under the health law in 27 states.

Some Wrestle With Higher Premiums, Confusion

In Philadelphia, Joseph Krakauskas, a retired 62-year-old, showed up two hours early at an enrollment event to secure a place at the front of the line. He has just found out that his current premiums were going to triple next year and he needed help finding a new plan. “This is almost like a bait and switch,” he said of the rate increase. “I can’t believe they’re getting away with this.”

Krakauskas wasn’t able to access his account through the website, however. Still, a counselor found him an HMO plan for $128 a month, higher than he was paying last year, but about half of what his old plan would cost in 2015.

Despite the government’s efforts to streamline the application, confusion and difficulty navigating the website also brought in many people, including Sarah White of Philadelphia, a mother of two.

“I have a doctoral degree,” she said. “The fact that this is so complicated for even someone with [her education] is ridiculous. But here I am trying to get help and I have hope.”

Demand for coverage was particularly high in California, where 1.2 million residents signed up for coverage last year.

By 9 a.m. Saturday, dozens had lined up for a festive enrollment event in Los Angeles sponsored by SEIU-United Healthcare Workers West. Most of the applicants came prepared – holding envelopes with pay stubs, birth certificates and Social Security cards. As each finished signing up, volunteers cheered, applauded and snapped photos.

Alejandro Irigoyen, 45, said he missed the deadline last year and didn’t want to risk doing that again. When he injured his foot recently, he paid about $500 for a doctor’s visit, X-rays and medicine. With the help of an enrollment counselor, Irigoyen signed up for a plan which will cover both him and his 23-year-old son for about $75 a month.

“I feel much more secure,” Irigoyen said.

The enrollment event took place in a heavily Latino neighborhood, and most of the counselors spoke Spanish. California exchange officials had been heavily criticized last year for not doing enough to reach out to the state’s large Latino population. Several of the families at Saturday’s event said they hadn’t previously enrolled in coverage because they have family members who are in the country illegally and feared telling the government too much.

After being reassured their information wouldn’t be given to immigration authorities, Crescencio Lorenzo, 48, a legal resident, came to the enrollment event with his daughter, Andrea, a U.S. citizen, and his wife, Susana Lorenzo, 48, who is in the country illegally. He and his daughter enrolled in Medicaid. “They told us not to worry,” about jeopardizing his wife, he said.

Weather And Glitches Are Issues In Ohio, Washington

Some enrollment events failed to draw consumers, including the “Rock Enroll” event at Cleveland’s Rock and Roll Hall of Fame. Officials blamed snow flurries. By mid-afternoon, Barb Wynveen, a navigator with the Carmella Rose Health Foundation, said she’d had no walk-ins, and all of her half-dozen scheduled appointments had been a bust.

There was more foot traffic at Northeast Ohio Neighborhood Health Services, a clinic primarily serving the poor. Counselor Khalil Ismail met with Prempal Kaur, a woman in her 50s who spoke mostly Punjabi, and her daughter, Ravinder Kaur, who translated.

“She’s a citizen. She’s a widow, a single mother,” explained Ravinda Kaur, who had traveled from Chicago to help her mother apply for insurance coverage. “And she works at the Convenient Food Mart, where she makes minimum wage.”

Before she left, Prempal Kaur was enrolled in Medicaid.

In Washington state, meanwhile, the shutdown of the website to fix a glitch led people to start filling out applications the old-fashioned way — with paper and pen.

“It’s incredibly frustrating,” said Gary Zablocki, a 51-year-old carpenter at an event at the Southcenter Mall in Tukwila, a Seattle suburb.

Joanna Richards at WCPN in Cleveland , Elana Gordon at WHYY in Philadelphia, Ann Doss Helms at The Charlotte Observer, Nick Nehamas at The Miami Herald, Lisa Stiffler and Patrick Marshall at The Seattle Times, Jordan Shapiro at the St. Louis Post-Dispatch, Wes Venteicher at The Chicago Tribune and Robert Calandra at The Philadelphia Inquirer also contributed.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

As Americans begin shopping again for health insurance under the Affordable Care Act on Saturday, they’ll be wrangling with premiums, deductibles, out-of-pocket costs and other vague and confusing insurance-speak.

Believe it or not, that’s the easy part compared to figuring out what the overall cost of health care is.

Sal Morales of Miami bought insurance in March during the ACA’s first enrollment period on healthcare.gov.

“I got my cards and it was like amazing,” Morales says, “like if I got an American Express Platinum card. That’s how I felt.”

Morales was unemployed at the time. Money was tight. And he knew he needed regular doctor visits to manage his high blood pressure. He diligently researched what he would get for the price before settling on a plan.

“Instead of me paying $560 [a month] for COBRA, I found out that I would have insurance for $145. I have a network deductible of $500,” Morales says. “My first three visits to a primary care physician, they’re zero dollars. Then it’s $5 out of my pocket.”

Morales understands his end of the health care equation, but what he sees doesn’t necessarily reflect what gets paid to doctors and hospitals for his care, says Bruce Rueben, president of the Florida Hospital Association.

Here’s how he breaks it down: “There’s one party, the hospital who provides the service. There’s a second party, the patient, who receives the service. And there’s a third party, the insurance, who pays for the service.”

That third part is where health care pricing gets really squirrelly.

Every hospital has its own “master list” of charges for different services. Those charges are different from hospital to hospital.

But insurance companies don’t pay those listed charges. The listed charges are almost fiction. Instead, each insurer negotiates for lower prices with each hospital and doctor on every plan. And insurers can have multiple plans with multiple agreements for the same hospitals or doctors.

Even if two patients have the same insurer, if their plans are different, the insurer may pay the doctor differently for the same care for each of the patients.

All of this means there are about as many pricetags for that hypertension checkup as there are insurers and providers.

“For an individual consumer I am completely sympathetic that it’s very confusing,” says Dr. Ezekiel Emanuel, who was an adviser to the president during the drafting of the health law and is now a health policy expert at the University of Pennsylvania.

“There are at least six different prices for a hospital day. And then there’s the cost of actually delivering the service, which, for most of these things, even hospitals don’t know what that is. So when you say, ‘What’s the price?’ It’s almost a meaningless question, because there [are] all these different prices.”

Those negotiated rates—the prices insurance companies really pay hospitals—are treated like trade secrets. Insurers and many hospitals don’t want their competitors to know what  the payments are

It is only on an individual basis that people can see the prices their insurer paid for their care. And it’s after the care has been delivered and only if the person is already insured.

It’s buried in a statement called an explanation of benefits. These are the letters from insurers that look like a bill but say “this is not a bill.”

Efrain Monzon helps patients interpret those explanations for Florida Blue, the largest insurance company in the state of Florida.

“We’re identifying the procedure, we’re identifying the provider, the date of service and then making sure the amount, the member responsibility has to be in there,” Monzon says.

Wedged into that statement somewhere between the billing code and the member deductible, is a column for the amount paid.

This is the secret number the insurance company and the provider have worked into their contract, says Monzon. The industry terms are usually “adjusted rate” or “negotiated rate.”

In Florida Blue’s explanation of benefits to patients, it’s called simply “amount paid.”

To get a clearer sense of what health care costs, someone would have to collect enough of those statements from patients at all different hospitals with all different insurance.

There are companies and crowdsourcing projects trying to do just that around the country. And Massachusetts has a law that says insurers have to disclose some of these prices in a way that is accessible to patients.

But so far, that’s not happening in South Florida.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Tomorrow it begins again – open enrollment for Obamacare. Two very successful state health insurance exchanges, Connecticut’s and California’s, are both intent on reaching people who avoided signing up last year – especially young Latinos and African-Americans.

“The big takeaway for us last year was that the uninsured were really pocketed in a couple of key, large cities,” says Jason Madrak, the chief marketing officer of Access Health CT, in Connecticut. In light of that, he says, the exchange has changed its ad strategy.

“We’ve dialed up some of the more locally-focused efforts while we’ve dialed down some of the broader efforts,” he says.

The uninsured people Madrak’s trying to reach tend to be young, male, urban and Hispanic or African American. They also “aren’t really consumers of traditional media,” he says.

They don’t necessarily read the big daily newspapers and they don’t watch mainstream TV, so they can be harder to reach. So Madrak is spending his media money on ads in community newspapers and on local television and radio.

Reaching potential customers is the first half of the job. The second half is figuring out what to tell them. One emphasis is on money, like in this TV ad with a barber asking his customer if he has health insurance. When the customer says, “No, I can’t afford it,” the barber says, “Now, you can, with Access Health CT, since you may qualify for help to pay for your coverage.”

Madrak says the messages of ads that appear later in the open enrollment period, as people are starting to think harder about choices, will be more specific about the cost of the insurance.

“If I say ‘affordable,’ nobody really knows what that means,” he says. “If I say, ‘I can get you a plan for 20 bucks a month with tax credits,’ that means something to somebody at that point.”

California health officials are also deploying a new and (they hope) improved campaign to woo Latinos. Last year, Covered California made a series of missteps. First, the exchange had only a handful of Spanish-speaking counselors at the call centers. And the Spanish advertising campaign was riddled with cultural oversights.

Among the worst gaffes: Some Latinos who worried that signing up would get undocumented relatives in trouble were shown a written promise from President Obama to the contrary – a note that, unfortunately, was printed on letterhead of U.S. Immigration and Customs Enforcement.

Covered California says it has learned from those mistakes. Peter Lee, the executive director, says this year, the agency is doubling down on making sure Latinos get the right messages.

“We’re actually spending more money on outreach, education, and marketing this year for a three-month period than we spent for six months last year,” he says.

The agency has hired 200 new call center counselors who speak languages other than English, Lee says. It is enlisting more trusted community organizations to allay fears about deportation. And it’s rolling out a new ad campaign tailored specifically to Latinos.

“Every person you see [in these advertisements] that is a Spanish speaker is a Latino who got coverage through Covered California this last year, and it made a difference in their lives,” says Lee.

This new video commercial shows pages of immigration documents flying into a safety vault – accompanied by verbal assurances that the application process is confidential.

But the main challenge, Lee says, is persuading Latinos to buy something they don’t believe they need or is worth the price.

“They’ve adjusted to a culture of coping,” he says. “We need to go from a culture of coping to a culture of coverage.”

Still, a woman in a recent focus group in Connecticut showed Madrak that even the best messages might not work.

“She said, ‘Listen, I saved everything that you guys sent me,’ ” Madrak says. ” ‘I have a box of postcards and letters that you sent me because it has the phone number on it and I wanted to save it.’ And we said, ‘Did you call?’ And she said, ‘No, I never called.’ And we said, ‘But you saved it all!’ And she said, ‘I know, I knew it was important; I just never got around to actually doing it.’ “

That, Madrak says, is the big, continuing challenge.

Open enrollment runs from Saturday, Nov. 15 through Feb. 15, 2015.

This story is part of a reporting partnership that includes WNPR, KQED, NPR and Kaiser Health News.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Smooth sailing. The administration promises and outside experts expect that this year’s open enrollment period on the health insurance marketplaces will be markedly less glitchy and balky than last. Consumers will begin to find out if that’s true tomorrow when the marketplaces open for 2015 coverage.

But even if enrollment goes smoothly this year, consumers shouldn’t be complacent about reviewing their options online to sign up for or renew their coverage, say experts. The three-month sign-up window that closes Feb. 15 is half as long as last year’s, and if consumers want coverage to begin Jan. 1 they need to sign up much earlier than that, by Dec. 15. So if you’re planning to shop, get cracking.

As of October, there were 7.1 million people enrolled in the health insurance marketplaces, according to the Department of Health and Human Services. Earlier this week, HHS estimated that 9 to 9.9 million will be enrolled in 2015. That figure is significantly lower than the 13 million projected by the Congressional Budget Office in April.

In 2015, approximately 315 insurers will offer coverage on the health insurance marketplaces, roughly 25 percent more than this year, according to preliminary data from 44 states published by HHS in September.

But those figures don’t tell the whole story.

“There are still rural areas where there is a real dearth of plans,” says Caroline Pearson, vice president at Avalere Health, a research and consulting firm.

And more insurers doesn’t necessarily mean more plans. In Florida, for example, the number of insurers on the marketplace will increase from 11 in 2014 to 14 next year, but the number of available plans will actually decline, from 352 to 278, according to data from the Florida Office of Insurance Regulation.

But choice is a two-edged sword, according to Sabrina Corlette, project director at the Georgetown Center on Health Insurance Reforms. “Most behavioral economics studies tell us that consumers are overwhelmed by too much choice and make less than optimal decisions as a result,” says Corlette.

Premium increases in 2015 should be modest for most people, and in many cases may decline slightly.

The average premium for a 40-year-old non-smoker who makes $30,000 a year will decline by 0.2 percent next year if he buys the second lowest cost silver plan, according to an analysis by the Kaiser Family Foundation of 2015 marketplace premiums in a major city in 47 states and the District of Columbia. (KHN is an editorially independent program of the foundation.) Individual state rates for this person would deviate substantially from the average, however, from a 28.4 percent increase in Anchorage, Alaska, to a 23.7 percent decline in Jackson, Miss.

The premium tax credit available to people with incomes between 100 and 400 percent of the federal poverty level ($11,670 to $46,680 for an individual) minimizes the effect of premium increases on people’s costs. But subsidies are tied to the second-lowest-cost silver benchmark plan, and in a number of areas that plan will change in 2015. When that happens, people may face substantial premium increases unless they take the time to shop and make sure they’re still in a low-cost plan.

“You may be able to insulate yourself against a big premium increase, but you still need to go in and change plans,” says Judith Solomon, vice president for health policy at the Center on Budget and Policy Priorities.

Consumers who are already enrolled in a marketplace plan and who do nothing during open enrollment this year will generally be automatically re-enrolled in their existing plan for next year with their existing premium tax credit, the federal government has said.

Consumer advocates say doing nothing could be a big mistake. Not only are benchmark plans different, if consumers have experienced changes in income or other circumstances that could affect their premium tax credit, they risk receiving the wrong amount and may have to pay back next year.

People who are already enrolled may not get the best deal if they don’t shop for a new plan, but at least they’ll have insurance. That’s not the case for the estimated 15 million uninsured people who are eligible to buy a marketplace plan. Reaching them is going to be a challenge, experts agree. They’re more likely to be younger, members of minority groups, lower income and less educated, says Anne Filipic, president of Enroll America. The organization’s Get Covered America campaign aims to get enrollment information to people in 11 states with high rates of uninsurance, among other things.

They have their work cut out for them. Nine out of 10 uninsured people said they don’t know when the open enrollment period starts, according to the Kaiser Family Foundation’s October health tracking survey. Two thirds said they knew nothing or practically nothing about the marketplaces, and more than half didn’t know that they could get financial help to pay for their coverage.

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Starting tomorrow, consumers can once again shop for coverage through the Health Insurance Marketplace.

What was once considered a ground-breaking U.S. study to track the health of children from birth to adulthood may be stopped before its official start, causing alarm for advocates and researchers who say its findings are crucial to developing prevention strategies for childhood illnesses like asthma, autism and attention deficit disorder.

Researchers for the National Children’s Study, devised by Congress in 2000, say the study could eventually influence a range of parental choices – from what foods kids eat to the household products or medications they are exposed to. Study advocates also say the potential findings are endless, and will likely go beyond advice given to parents, to have an impact on insurance-coverage decisions and even broader public policy questions.

“We don’t have the evidence we need to truly improve children’s health in this country. We need this study. … The importance of the investment is clear,” said Lisa Simpson, president and CEO of AcademyHealth, a membership group of policy analysts and health services researchers, and who was involved in the study’s early years.

The 21-year longitudinal study of 100,000 children was set to start this year. Its implementation, though, has snagged on concerns that it’s based on costly and antiquated research methods, and that it has been plagued by mismanagement. A National Institutes of Health working group is investigating these issues and offering recommendations –due out in December — about the initiative’s future.

Almost ten years before the study’s launch, and amid growing concerns that children suffered disproportionately from the effects of social and environmental factors, President Bill Clinton created a task force to look at policy solutions, which eventually called for legislation to mandate a large study. In May 2000, former Rep. Michael Bilirakis, R-Fla., introduced the act, which was passed and then signed by Clinton that October.

The Vanguard Study, which began in 2007 as the official precursor to the NCS, is a small version of the main study. It has been operating through 40 sites to test ways to recruit women who expect to be pregnant in the near future, and to experiment with data systems. Since then, however, this blueprint has been marked by problems, which led to a July Institute of Medicine report questioning whether the main study should be given a green light to go forward without major changes.

Even researchers involved in the pilot project have criticized it for not identifying a streamlined sampling strategy. The study’s design also fails to take advantage of a number of communications tools, including social media, email, text messages and phone calls.

Jane Holl, a principal investigator who also is a professor of pediatrics and preventive medicine at Northwestern University, expressed frustration that researchers aren’t allowed to use these common-sense ways to keep in touch with participants. Despite this disenchantment, though, the potential findings keep her interested in the project’s potential.

“It could tell us so much about relationships — starting in the prenatal period through late childhood — and how those factors affect early adulthood,” Holl said, who is charged with overseeing ten of the 40 pilot sites.

Federal support for the research is also at risk. Funding was put on hold for the main study in 2013 after congressional appropriators provided $165 million per year for the main study — $30 million less than initially planned, and made that money hinge on the Institutes of Medicine evaluating progress. This reality has added to advocates interest in the NIH working group’s recommendations, and the potential ways that more could be done with less.

Often research is focused on adult illnesses instead of studying children until adulthood and figuring out how to prevent later-in-life health problems, said James Perrin, president of the American Academy of Pediatrics.

“If I’m a member of Congress, I’m more concerned about heart disease at 50-years-old, and that’s where we’ve funded it more actively. We need to know what we can do in childhood,” Perrin said, adding that “we’re impatient at this point” and it’s important to “deal with the logistical problems.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Millions of low-income children are failing to get the free preventive exams and screenings guaranteed by Medicaid and the Obama administration is not doing enough to fix the problem, according to a federal watchdog report.

The report, released Thursday by the Department of Health and Human Services’ Office of Inspector General (OIG), says the administration has boosted rates of participation but needs to do more to ensure that children get the regular wellness exams, dental checkups and vision and hearing tests. The report notes that 63 percent of children on Medicaid received at least one medical screening in 2013, up from 56 percent in 2006, but still far below the department’s 80 percent goal.

Only Iowa and California exceeded that standard last year. Alaska and Ohio were below 40 percent. Five more states — Mississippi, Montana, North Dakota, Oregon and Wyoming — were between 40 percent and 45 percent.

Child health advocates cite several factors for the low rates, including a shortage of doctors treating Medicaid patients, states’ low pay for providers and parents’ lack of awareness about the importance of the visits.

Both children and taxpayers pay a steep price when children’s health problems are not caught early.

“We end up with kids who are sicker, with more long-term, serious medical issues that are more expensive to treat,” said Jennifer Clarke, executive director of Public Interest Law Center of Philadelphia.

Some experts say that state officials — not the federal government— bear most of the responsibility for low screening rates because they administer Medicaid, the state-federal program for the poor. They say states need to step up oversight over the private Medicaid health plans that many contract with to cover children in the program.

“The federal government is working hard on this, but the only power they have over states is to take away their funding and that is highly unlikely,” said Jane Perkins, legal director of the National Health Law Program.

Congress introduced the Medicaid benefit, known as the Early and Periodic Screening, Diagnosis and Treatment program, or EPSDT, in 1967 so that children would get age-appropriate diagnostic tests, including for vision and hearing, preventive services such as immunizations and treatments. About 32 million children on Medicaid were eligible for the benefit in 2013.

The preventive care program is more generous than those offered by the Children’s Health Insurance Program (CHIP) or private health insurers because it guarantees coverage not just for a wide range of tests, but also the treatments to address health problems. Most states follow the guidelines of the American Academy of Pediatrics, which calls for 13 preventive visits in first three years of life followed by mostly annual visits until age 21.

Boston pediatrician Michael McManus, a member of the academy’s state government affairs committee, said he is saddened by the fact that more than a third of children on Medicaid are not getting at least one regular preventive exam. “We have a lot of work to do,” he said.

Low participation rates have plagued the program for years, according to previous reports by the inspector general’s office and the U.S. Government Accountability Office.

A 2010 OIG report found that 76 percent of children in nine states did not receive all required medical, vision, and hearing screenings, 41 percent of children nationwide did not receive any of the screenings, and more than half did not receive any vision or hearing screenings. All states are required to provide the benefit.

The latest OIG report praised the U.S. Centers for Medicare & Medicaid Services for working to increase screening rates, such as by distributing guides that enable states and providers to share their best ideas. The guides show, for instance, how some states used websites to educate providers and parents. Some states such as New York require Medicaid health plans to educate members about the benefit and what it covers. Neighborhood Health Plan of Rhode Island boosted adolescent screening rates by 40 percent by offering gift certificates for pizza and movie tickets, according to a 2014 CMS report.

Still, the report said, “the underutilization of medical screenings is an ongoing concern.” CMS has done “very little” to encourage providers to complete all five components of an EPSDT medical screening—   physical exam, medical history, immunizations, lab test and education, the report said.

CMS had no immediate comment on the report.

Medical screening rates fall off dramatically as children get older, according to federal data that track states’ efforts. For example, about 90 percent of children below the age of 1 get at least one screening. But screening rates drop to 77 percent for kids between the ages of 1 and 2, and 56 percent for those between 10 and 14.

Ohio, which had the lowest rate of children getting regular exams in 2013, attributed its problems to getting Medicaid managed care plans to report their data to the state.

Neva Kaye, interim executive director of the National Academy for State Health Policy, said data collection is an issue for some states but it doesn’t explain most of the low rates.  In addition to the shortage of doctors participating in Medicaid, parents often face transportation and language barriers getting children in for the exams, she said.

Dr. David Kelley, chief medical officer for Pennsylvania’s Medicaid program, said that state is working to boost the number of children getting checkups in part by paying bonuses to doctors to do them. He said that the rate of Pennsylvania kids getting the screenings is “in the middle of the pack” and “that is not good enough.”

Clarke, with the Public Interest Law Center, said low Medicaid reimbursement to pediatricians means fewer doctors are available to see poor children and parents face long delays getting their kids in for preventive visits and treatment, if they can get to see them at all.

The center filed a federal class-action lawsuit in 2005 against the state of Florida on behalf of 2 million children in Medicaid saying low reimbursement for Medicaid pediatricians prevented children from getting the health services to which they are entitled. A judge is expected to rule later this month on the case.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.