Nine months after Americans began signing up for health insurance under the Affordable Care Act, a challenging new phase is emerging as confused enrollees clamor for help in understanding their coverage.
Nonprofits across the country are being swamped by consumers with questions. Many are low income, have never had insurance and have little knowledge of the health-care system. The rampant confusion poses a potential hurdle for the success of the health law: If many Americans don't understand health insurance, that could hurt their ability to use their benefits — or to keep their coverage altogether.
Community organizations are scrambling to keep up with the larger-than-anticipated demand but are stretched thin. A federal program to help consumers has also run out of money.
"We are hearing this in probably every state that we work in," said Christine Barber, a senior policy analyst with Community Catalyst, a Boston-based advocacy organization that works with community groups in more than 40 states. "'Okay, I have my card, what do I do now?' "
Health insurance, with its jargon and complicated fee structure, has long been confusing for many consumers, but experts say the literacy gap poses an especially big problem now. Before the opening of the marketplaces, people buying coverage on their own tended to be individuals with higher incomes and more familiarity with how insurance works.
Beyond that, continuing technical problems involving the federal health insurance exchange and state exchanges mean some enrollees still haven't gotten insurance cards or are not getting billed properly. That adds to the workload of nonprofits and insurers.
"So what you've got is an insurance industry that did not do a good job in gearing up for a population that has never had health insurance before, an Obama administration that did a horrible job on the back-end, resulting in a flood of calls to insurer call centers, and a population that is low-income and is not health-insurance literate. Put those things in a bag and you've got a problem," said Robert Laszewski, a health industry consultant who has been critical of the law.
A spokeswoman for the U.S. Health and Human Services Department said: "We are focused on continuing the work we began during open enrollment of educating consumers about their new health insurance coverage."
At a Silver Spring health clinic, Rebecca Wener spends most of her time helping clients figure out their new plans. Julio Herrera, 63, a construction worker, bought what he thought would be the most affordable plan when he enrolled through Maryland's new insurance exchange this spring.
But he doesn't understand why he is getting charged for hospital bills when he already pays the insurance company every month. And he did not grasp this thing — a deductible — that was $4,000.
"If there is one concept that people don't understand, it's the deductible," said Wener, a specially trained enrollment worker at Community Clinic, a nonprofit group that helps low-income Maryland residents. "That's been a really huge thing. And the very cheapest plans have very big deductibles." (The deductible is the amount consumers must pay every year before insurance kicks in.)
Organizations that helped people sign up for insurance are being swamped by consumers returning for help. It's "the boomerang effect," said Karen Pollitz, a senior fellow at the Kaiser Family Foundation. Confused consumers who can't find help elsewhere return to the people and places they trust, she said.
Rebecca Wener is a specially trained enrollment worker at Community Clinic, a nonprofit in Silver Spring, Md. She draws diagrams and charts to explain premiums, deductibles and other aspects of health insurance to newly insured consumers. (Lena H. Sun/The Washington Post)
The foundation surveyed an estimated 4,400 such consumer assistance programs shortly after sign-up ended in the spring. Ninety percent had been re-contacted by consumers and 44 percent of those programs had seen people who didn't understand how to use insurance, according to the KFF report released Tuesday.
Demand for help from consumers has been so overwhelming at the Pennsylvania Health Access Network, a statewide coalition working to expand insurance coverage, that it is launching special seminars for consumers later this summer, said Antoinette Kraus, coalition director.
Language and cultural barriers are adding to the confusion. Many clients also struggle to read and write in their native language, predominantly Spanish, making for a steeper learning curve, said Elizabeth Colvin, director of Insure Central Texas, an Austin-based nonprofit working on enrollment. The majority of the 5,647 residents the group enrolled never had insurance before, she said.
And health insurance is not an intuitive concept.
Until this year, Dibekulu Dagne, an Arlington, Va., cab driver from Ethiopia, and his family got virtually free medical care at the Arlington Free Clinic. But under the health law, they were eligible to receive federal subsides to help pay for private insurance. He enrolled his wife, his daughter and himself in a plan with a monthly premium of nearly $900. His cost, with the federal subsidy, is $261 a month.
But he said he doesn't understand why he has to pay premiums when he is on vacation. Or why his wife, a home caregiver, had to pay when she went for her first doctor visit, referring to the co-payment required for most physician services. "Why? My wife went to the doctor for a checkup. She had to pay. She's not happy about the payment."
And it's not just immigrants who are having trouble.
Other residents often don't understand why they have to pay monthly for a service they may not use and then have to pay more when they use it. It's also hard for them to grasp the more abstract value of having insurance if they become seriously ill or have a major accident.
Focus groups with residents in Montgomery and Prince George's counties who signed up for coverage under the law found widespread confusion, regardless of education or income, according to Sharon Zalewski, vice president of the Primary Care Coalition of Montgomery County, which is monitoring the enrollment effort in those counties, which has the highest numbers of the state's uninsured. Among them are people navigating on their own after losing employer-covered insurance.
In some instances, people have put off going to see the doctor "because they think they have to pay their full deductible up front, and they don't have it," said Kathy May, director of Virginia Consumer Voices for Healthcare, a consumer health-care coalition.
Linda Cole, a restaurant cook in Shirlington, Va., has been confused about her plan since she signed up in January. She hasn't been able to find a primary care doctor; she sent a note with her premium payment asking her insurer "if I could get a booklet sent to my house." She didn't hear back and returned for help to the Arlington Free Clinic, where she used to be a client.
Efforts are underway around the country by government agencies, universities and consumer groups to help people understand health insurance terms, what their plans cover and how to use them. The University of Maryland is developing a curriculum on teaching health insurance literacy.
The online health insurance exchanges also have explainers and videos, as do the Web sites of insurance companies. Some have produced webinars, and many plans have new member kits, said Susan Pisano, a spokeswoman for America's Health Insurance Plans. Many services are offered in multiple languages, and interpreters are available.
CareFirst BlueCross BlueShield, the dominant carrier in the D.C. region, anticipated that many people seeking individual coverage would be new to or have limited experience with insurance. In addition to printed materials with simple definitions and explanations, the company has developed a "quick guide" about coverage that it will distribute to all individual members in the next two months.
But ongoing technology problems related to exchange enrollment "have presented many issues and created confusion," said CareFirst spokesman Michael Sullivan. Consumers have described hours-long wait times with customer service staff.
Even though Carefirst more than doubled its call center staff to 360 in 2014, he said, "it remains a challenge to manage call volume as quickly and efficiently as we would like."
In the meantime, community organizations are scrambling to produce materials for consumers. Virginia Consumer Voices for Healthcare put together a primer of basic terms in English and Spanish and is funding another nonprofit, Northern Virginia Family Service, to hold training sessions to teach people about insurance.
"Many of our clients are reading at a fifth-grade level, even in their own language, so it has to be pictorial, or animated," said Ken Sharma, who is overseeing NVFS's work on the health-care law.
The Arlington Free Clinic fielded so many inquiries from former clients that clinical administration director Jody Kelly asked staff to follow up with each of about 100 former patients to confirm they got insurance. Some patients showed up at the clinic with their new insurance cards to get their questions answered. Clinic staff made telephone calls for them, explained how insurance works and showed them what the different telephone numbers meant on their cards. The clinic also arranged for an enrollment counselor to come to the clinic, as necessary, specifically to help these consumers.
Wener, of Community Clinic in Maryland, often draws charts and diagrams on her notepad to explain terms to her clients. Regardless of how many times they go to the doctor, she tells them, they need to pay the monthly premium. To explain what a hypothetical $1,000 deductible means, she draws a line into two segments. Anything up to the $1,000 mark means clients have to pay in full before health insurance begins to pay.
That means a hospital charge for $500 and a doctor's bill for $100 will come out of their pocket. "That's when their faces are usually looking at me in horror," she said.
She told Herrera he could ask the hospital for a discount on his bills. She also said he could shop for a new plan in the fall and make sure to ask about the deductible.
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