Allegra Abramo

Suzanne Schwing's career as a freelance classical singer made signing up for healthcare tricky. Luckily, the CAP program provided a guide.

Suzanne Schwing tried for months to get health insurance through New York’s Affordable Care Act marketplace last winter—calling, sending documents, calling again.
Schwing, 45, works a dozen jobs as a freelance classical singer, which stumped marketplace representatives as they tried to estimate her future income. By the time they agreed on a figure, she’d missed the March 31 deadline. So when enrollment reopened on Nov. 15, Schwing decided she needed face-to-face help from an expert.

“I’m really up against a deadline, and I don’t have time to play around anymore,” she said.

Schwing took her frustration and a fat manila envelope to the Manhattan offices of the Community Service Society*, where healthcare advocate Ayaz Ahmed squeezed her in between appointments with other bewildered healthcare consumers. She was lucky to find him: Ahmed is one of only a few dozen people in New York trained to fix healthcare headaches—and save consumers money—as part of the state’s consumer assistance program, or CAP.

There are few Ahmeds in New York, but potentially millions of perplexed and frustrated healthcare consumers like Schwing—and their numbers grow daily, as thousands get health insurance for the first time. But many consumers, and even the organizations charged with helping them, don’t know about CAPs. And federal funding for the program runs out in June.

Little public knowledge

Unlike government regulators, which must maintain a position of neutrality, CAPs are “there to actively advocate on behalf of the consumer,” says Karen Pollitz, a senior fellow at the Kaiser Family Foundation.

Beyond helping people sign up for health insurance, CAPs navigate post-enrollment problems—for example, disputing bills and appealing denied claims. Several other types of “in-person assisters,” including marketplace navigators, also help with enrollment, but they don’t have the time or knowledge to deal with more complex issues. And CAPs can tackle any kind of insurance, including state marketplace plans, job-based plans, Medicare, Medicaid, veterans benefits and others.

“For the Affordable Care Act, this important reform, to be successful, consumers need to be satisfied long-term with the insurance they have,” said Nora Chaves, operations manager for Community Health Advocates, which trains and coordinates CAP providers under a contract with the state. “They need to be able to use it and understand it and feel comfortable with it.”

Recent studies have found that Americans have difficulty understanding basic health insurance terms and how plans work. A 2013 survey of insured adults published in the Journal of Health Economics found that only 14 percent knew all four health insurance terms tested. (Think you can do better? Take this quiz to test your insurance knowledge.)
In New York, 81 percent of the nearly 1 million people who enrolled through the marketplace last year didn’t have insurance when they signed up, according to a June 2014 state analysis. These insurance newbies are likely to be even more confused than people who already have spent years puzzling over the difference between deductibles, co-pays and coinsurance.

Consumer assistance programs are needed because “insurance is hard—and it’s hard for everybody,” Pollitz said.

Learning the lingo

Aliza Morell, a 31-year old Brooklyn artist, recently learned how unprepared she was to use her new silver-level plan.

When she woke up feeling dizzy one morning in November, she went to a doctor covered by her plan. Morell asked if blood tests he’d ordered would be covered, and the doctor assured her they would be.

“I wasn’t in a state to be questioning what the doctor said I should do,” she says.
A few weeks later, Morell got a notice from her insurance company saying she owed $550 for one of the tests, thanks to her large deductible.

“More than anything, I was surprised,” she says. “My deductible is $2,000, and I didn’t know what that meant.”

The CAP program teaches consumers insurance lingo and how their plans work so they can eventually advocate for themselves, said Govind Shantharam, a health advocate with Seedco, one of about 24 subcontracted CAP providers across the state.

But there will always be cases where people need expert assistance. Appealing denied claims can be a convoluted process. Shantharam, who has a background in debt collection defense, said he can spend up to nine hours working a single case. He also refers cases to partner organizations that provide legal backup, including the Legal Aid Society and the Empire Justice Center.

An advocate can save consumers not only hassles, but money. Nearly half of consumers who fought denials of coverage with help from a CAP won their appeals, according to a Centers for Medicare & Medicaid report on the program’s performance in 2010. In New York, consumers working with Community Health Advocates have saved an estimated $13 million since 2010, Chaves says.

Despite CAP’s value to consumers, advocates say many navigators and social service organizations are still unaware of the program. A Kaiser Family Foundation survey of Affordable Care Act assister programs last summer found that many didn’t refer clients to CAPs, even though the vast majority said consumers come back to them with post-enrollment questions. To spread the word, Seedco is reaching out to community-based groups around the city.

Will help continue?

The Affordable Care Act allocated $30 million for consumer assistance programs in 2010, but Congress has not authorized additional funding since 2012. Since then, New York and a dozen other states have paid for CAPs out of federal marketplace establishment grants that expire in June.

State dollars are the best hope for maintaining a statewide program, although city funding for a local program is also a possibility. A spokesman for City Councilmember Cory Johnson, chair of the health committee, says he is committed to retaining these services.

For consumers like Suzanne Schwing, working with a CAP can make all the difference. What she wasn’t able to accomplish over three months and a dozen phone calls to the state marketplace, Ayaz Ahmed was able to do in less than hour. By the end of their meeting, Schwing had hit “complete application” on a silver-level plan that she estimates will save her thousands of dollars a year.

“I’m feeling a great sense of relief,” Schwing said. “I couldn’t get it done myself, and I’m pretty savvy. So clearly this was a huge advantage being able to work with him.”

Additional reporting and quiz by Jenna O’Donnell.

*Community Service Society is a former parent organization and current funder of City Limits.