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Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop (2017)

Chapter: 3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance

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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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3

Challenges Faced in Helping the Uninsured Get and Use Health Insurance
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To gain some perspectives on the challenges of helping consumers understand health insurance and enroll in a suitable plan, Terry Davis, professor of medicine and pediatrics at Louisiana State University Health Sciences Center in Shreveport, moderated a panel featuring three individuals who play different roles in helping the uninsured get health insurance through federal or state insurance marketplaces. The three panelists were Elisabeth Benjamin, vice president of health initiatives at the Consumer Service Society (CSS) of New York; Janette Robinson Flint, executive director of Black Women for Wellness in California; and Janet Mentesane, executive director of the Martin Luther King Health Center and Pharmacy in Shreveport, Louisiana.

Before introducing the panel, Davis said the primary lesson she learned from speaking with the three panelists before the workshop is that health is personal and health insurance is a learned lesson for everyone. “A cookie-cutter approach to national health insurance enrollment and helping people once they are enrolled will not work,” said Davis. She also noted that states vary widely in how they implement marketplaces, just as insurance

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1 This chapter is based on responses of Elisabeth Benjamin, vice president of health initiatives at the Consumer Service Society in New York; Janette Robinson Flint, executive director of Black Women for Wellness; and Janet Mentesane, executive director of the Martin Luther King Health Center and Pharmacy in Shreveport, Louisiana, to questions posed by Terry Davis, professor of medicine and pediatrics at Louisiana State University Health Sciences Center in Shreveport, and the statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.

Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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plans vary widely. With that statement, she began posing questions to the panelists.

WHAT IS YOUR ROLE IN ENROLLING PEOPLE AND WHAT IS UNIQUE ABOUT YOUR STATE?

As a prelude to her answer, Benjamin said, in many ways, New York has the most extraordinary marketplace in the nation in that it does simultaneous enrollment for every possible form of coverage, including commercial qualified health plans, subsidized plans with a tax credit, cost-sharing plans, Medicaid, Child Health Plus, and the new basic plan for those who are lower income but not Medicaid-eligible. In addition, undocumented immigrants can precertify for emergency Medicaid in the case of a catastrophic illness or a condition that qualifies for emergency treatment.

The second thing Benjamin said New York did right is to invest in a robust navigator program. Currently, there are 50 navigator programs in the state, with the program she runs—the CSS Navigator Network—being the largest, with a $5 million contract from the state. In total, New York spends $30 million annually on its navigator program. The CSS Navigator Network partners with what Benjamin called “alternative kinds of community-based organizations” that are not part of the traditional Medicaid enterprise. “We did have some traditional Medicaid enrollers, but we tried to get non-traditional enrollers,” said Benjamin. For example, one rural community organization, S2AY Rural Health Network,2 enrolls people at their kitchen tables at the family farms in rural New York. Other partners include tiny immigrant-serving, community-based groups, such as the urban South Asian Council for Social Services.3 Partnering with such groups enables the navigators to go where the people are, including the Gudwaras where Sikhs worship, the mosques, the local bodegas, and other local community-based places. Other partners include local chambers of commerce that reach out to groups serving small businesses and community colleges that have access to the young invincibles (young adults who believe that because they are healthy it is in their best interests to not enroll in health insurance).

Flint explained that Black Women for Wellness takes a multigenerational approach to outreach among African American women to promote healthy behaviors. One of its programs, Perfectly Natural, works in beauty salons, barber shops, and beauty colleges, and another, called Super Soul Sundays, trains people in faith-based institutions to do outreach and provides them with all types of health education materials. Black Women for

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2 See http://www.s2aynetwork.org (accessed January 31, 2017).

3 See http://www.sacssny.org (accessed January 31, 2017).

Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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Wellness also has a robust information system that taps into Southern California’s diverse set of ethnic newspapers and news outlets. She explained that foundations have been supportive of her organization’s efforts to use its network to promote health insurance plans offered under the ACA.

Black Women for Wellness, Flint explained, made a conscious decision to separate health insurance enrollment from health education on the assumption that these would require two different strategies. That assumption, she said, was to be correct. “Folks who did the enrollment had to spend much more time, and had to have much more information about the various health plans,” said Flint. Whereas enrollment in New York may have taken 90 minutes, in the communities her organization serves the enrollment process was more than a one-time-visit proposition. She noted that this type of intense, multivisit process was not factored into the equation on how community-based organizations and navigators would get paid.

Mentesane explained that the Martin Luther King Health Center and Pharmacy is a free clinic and free pharmacy serving mostly chronically ill patients in northwestern Louisiana. She said she initially applied to offer a navigator site to help her patients. Slater found out that of the four entities funded in Louisiana, her organization was the only one in all of northern Louisiana, and it received $82,000 in funding to cover that entire region, not just her organization’s clients. In March 2015, she and her board of directors decided to withdraw from the navigator program because it was underfunded and required too much time from her staff of five full-time and five part-time employees to cover the entire northern part of the state.

Even before the enrollment process started, Mentesane had to defend her organization’s plans before the Louisiana Board of Insurance and members of Congress. One concern, she said, had to do with protecting patient information. “We are a medical clinic, and we already know how to do that,” said Mentesane. “It was ridiculous.” Interactions with the Louisiana Board of Insurance have been very negative, she explained, and created a hostile environment between the insurance industry and navigators. “I think that was a lost opportunity because [people in the insurance industry] are the experts. We should have been allowed to use the experts and the insurance industry to help us educate consumers who did not know that much about insurance,” said Mentesane. She blamed the highly charged political environment in Louisiana with respect to the ACA for the inflexible, labor-intensive reporting and oversight procedure the navigators in her state have to cope with, in addition to dealing with the challenges of working with clients who never had an email address and were not used to keeping track of passwords. Some of her clients never had a bank account and some did not even have a phone, and if they did, the number sometimes changed on a weekly basis. “I tried to work with our program monitor to

Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×

explain that,” she said, but the monitor was inflexible. For example, she asked the monitor if her program could help a client create an email address and password, and keep that information for that person because her clinic is used to keeping protected information secure. “They came back and said no. There was no flexibility,” said Mentesane.

WHAT CHALLENGES DID YOU FACE WHEN THE FEDERAL GOVERNMENT OR STATE ORCHESTRATED A SET OF REQUIREMENTS AND THE RUBBER THEN MET THE ROAD?

New York is a big state with both rural and urban areas, said Benjamin, whose program works in 61 of the state’s 62 counties. Internet access is not available in many rural parts of the state, and the marketplace is an Internet-based platform. Instead of being able to reach farmers at their homes, some farmers had to go to the local library to use its Internet connection and meet with the navigators there. Navigators also have to drive long distances to meet with clients in these rural areas, which is an added expense, she explained. The other major challenge in rural areas is convincing people that affordable options exist, and they have their advantages. One farm family, for example, was paying $850 per month for a $5,000 deductible plan, but her program’s navigator determined they were eligible for free coverage under Medicaid. “That is the change you can make in people’s lives,” said Benjamin.

In urban areas, one of the challenges is dealing with diverse populations and languages. In addition, some urban residents have not necessarily had good experiences dealing with government. “You have real challenges in urban areas with finding people who are eligible for these programs and then actually communicating with them,” Benjamin explained. Some communities, she added, have unique issues. Some Muslim women, for example, will only deal with female navigators and will require that any photographs taken during the verification process are destroyed. “You have to think through for each population you are working with what the challenges are going to be,” said Benjamin. “I am not the expert and that is why we partner with good on-the-ground community organizations.”

One problem she has faced is the program’s inflexibility with regard to what she called the boomerang problem—when clients have problems and they come back. “Our navigators are not trained to deal with postenrollment issues, which are quite complicated,” said Benjamin. Those complications arise from the complexity of the different laws and because there are four regulatory agencies in New York overseeing the different types of coverages.

Flint said she is well aware of the boomerang effect and expected people to come back to the navigators. “Using your health insurance is

Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×

a behavior that is learned,” she said. “If you grew up in a household where you had health insurance, they taught you how to use it. It becomes ingrained in your culture. If you are just getting health insurance, then you need to learn how to use it. We foresaw that people would be coming back and needed a system and a structure to make that happen.”

Flint also referred to the Internet problem and said it is not just a rural problem, but one that also exists deep inside urban centers. In some urban areas, Internet connections are so slow and unreliable that they go down before the application process is complete. In addition, many inner city residents cannot afford an Internet connection.

Trust is another issue her organization faces, said Flint, as is a lack of health care providers. Her program’s office in Los Angeles is in a catchment area of 1 million people with no hospital, she explained, and there is a shortage of health care providers who are culturally and linguistically competent in that area. “Finding a provider in your catchment area or close geographic area is a problem, as is transportation to that person or to get to those centers when you need health care,” said Flint. For individuals without a car, accessing health care can be difficult, she noted.

Aside from the biggest challenges of being underfunded and having to cover a large area, Mentesane said the main problem her clients faced was the high deductibles and co-pays that her chronically ill patients cannot afford. “It was difficult to find a plan that would work for them so they could maintain their health until they met deductibles,” she said. Another issue with many of her clients was making sure they pay their premiums every month. Many workers in northern Louisiana have seasonal employment, and when work is scarce, paying the rent and utilities comes before paying the health insurance bill, she explained. “They are real happy they might have a policy, and then two or three months later they are back at our clinic because they are uninsured again,” said Mentesane.

WHAT RESOURCES ARE NEEDED NOW TO IMPROVE THE ENROLLMENT PROCESS FOR MORE PEOPLE?

Benjamin said the enrollment problem is growing more difficult because the people who have yet to be enrolled are the ones who need in-person assistance the most. “These are not the people who can go on to a website and enroll by themselves,” she said. Her biggest worry is that federal and state governments are going to start cutting funds from navigator programs at the same time the problem is growing more difficult. She also said it is a shame that the federal government has decided to not fund postenrollment consumer assistance programs designed to help an insured individual who needs to file an appeal over an insurance company decision. “People do not know how to do that by themselves,” said Benjamin. “They do not know

Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×

the rules of engagement. We have just decided to give up on the consumer protection aspect of the law, and I think that is a travesty.”

Flint agreed with Benjamin that there is a continuing need for resources to support navigator programs and consumer assistance programs because insurance and the health care system are still difficult for many individuals to navigate. In particular, she noted how important federally qualified health centers are today because they treat the individuals who have given up trying to navigate the health system, both public and private. “They are still very much needed in terms of the critical care that they provide that is essential to folks who are newly insured or folks who even want something close to where they live,” said Flint. She also said the coalitions that formed to turn the promise of the ACA into reality are still needed, noting that the problem of so many Americans being uninsured did not happen in 5 or 10 years, and it will not go away with 5 or 10 years of resources. “It needs to be bolstered until it is ingrained in our culture,” said Flint. Davis added that even the language of health insurance is new to many, with terms such as deductible and co-pay still being foreign concepts to many.

Mentesane said what would have helped her program would have been for the federal government to recognize the root problem in Louisiana, which is that most of the resources went to the three programs in the southern part of the state and her small organization received a mere $80,000 to cover everything north of Baton Rouge. “It was not going to be a feasible plan to try to do both outreach and enrollment with part-time navigators,” said Mentesane. She also suggested that monitoring and reporting procedures need some flexibility to reflect geographic and population density differences. “One size does not fit all over the country,” she said. With regard to the insurance plans, she believes there is a need to do something about the deductibles and to design plans that are more affordable, perhaps by allowing more flexibility in the base policy requirements. As an example, she said that a woman her age does not need coverage for maternity care.

Benjamin disagreed with Mentesane’s last comment, saying that one of the strengths of the ACA was its requirement for basic, bottom-line definition of what health insurance covers. “I think there are interesting ways to tweak the law to get to what Janet [Mentesane] wants, which New York state is doing now,” she explained. One idea that New York and the federal marketplace are trying is to include more services beyond preventive care in the predeductible category, such as three sick visits. “We will figure out how to tweak it on the actuarial side,” she said. In her opinion, insurance works on the solidarity principle, and if certain types of care, such as maternity care, are excluded from some policies, the system will not work.

Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×

WHAT STEPS ARE NEEDED TO HELP PEOPLE RETAIN AND USE HEALTH INSURANCE?

To Mentesane, flexibility is the key, both in implementation and in the plans themselves. “Of course the next step is reforming the whole health care delivery system, but that is another issue,” she said. Referring to an earlier comment from Flint, Mentesane said that more effort needs to be spent educating people about health insurance before starting the enrollment process. She suggested the insurance industry could be a good education partner here.

Benjamin applauded New York’s approach to renewal, which is to require little documentation rather than having people “reprove their lives every year like the old Medicaid programs used to do.” States have the flexibility to do this under the ACA provisions, she noted, and in New York the effect has been to reduce the churn rate by a substantial amount. “I think that helps lead to long-term retention,” said Benjamin. She also said the person who oversees the navigator contracts in New York holds a weekly hour-long conference call in which representatives from all 50 navigator program talk about every problem and system glitch they encounter. The program head then refers those problems to the appropriate state-level person. Benjamin said she believes this system of providing real-time feedback from the ground troops has helped improve the navigator program and increase New York’s overall retention.

Flint said educating the public about how to navigate the insurance and health care systems is key. However, she added, there is a need to learn more about the health and health practices of these newly insured individuals in order to have a significant impact on their health. For many of these individuals, prevention is a new concept, and going to the doctor has been something that was discouraged prior to having insurance. In addition, there is a need to remove some of the barriers to accessing preventive services, she said.

Before opening the discussion to the workshop participants, Davis summarized the important messages she heard from the three panelists:

  • Trust and flexibility are keys to success.
  • Anticipate that people are going to need more time and to come back more often.
  • One size does not fit all given that people’s situations change and every state is different.
  • Rural areas have different needs than urban areas.
  • The Internet is not the answer to all problems given that not everyone has access to the Internet or the skills to use it.
Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×
  • Everybody may need some help navigating the system at some point and could benefit from working with a learned intermediary-such as navigator.
  • There are linguistic, cultural, and transportation challenges that contribute to the boomerang effect.
  • This is a process and the nation is still learning how to do it better and fine tuning the system to make it more responsive to the needs of the public.

DISCUSSION

Bernard Rosof opened the discussion by saying, “It is very clear that once again we have learned that challenges—the challenges of no Internet, the challenges of long distances for navigators, the challenges of nothing affordable, and the trust factor—produce an enormous number of opportunities.” He cited the accomplishments of the panelists’ programs as proof of what can be accomplished when challenges are met. Picking up on the panelists’ comments that more education of the public was needed, and noting that using health insurance is a learned behavior, Rosof asked the panelists for ideas on what could be done to educate the health care provider and other members of the health care team about the issues the panelists raised to facilitate understanding. “Education has to be not only on the person and patient side, but on the provider team side, too,” said Rosof.

At Mentesane’s clinic, groups of patients have appointments at the same time. These patient teams receive all aspects of care at these appointments, and when the ACA was being rolled out Mentesane and her clinical teams added education sessions to those visits. One advantage of that approach, she said, is that these patients all know each other and so they felt emboldened to ask questions and have good discussions about various aspects of insurance.

Benjamin’s experience in New York has been that there is a great deal of provider resistance to insurance and the ACA plans. In Manhattan, many providers at the borough’s highly regarded academic institutions do not want patients with the ACA insurance and only see them at hospital-based clinics rather than in their offices. “I feel that a great deal of education needs to happen on the provider side about insurance,” said Benjamin. “I think many providers do not really understand insurance.” Flint agreed and added that there is a definite wall between those who do billing and those who provide care, and that wall has to come down. Flint expects the level of education will increase as the health care system gets more providers from the communities they serve. For example, Flint knows a female Muslim doctor who works well with the Islamic community surrounding her program’s office. “She knows how to work with the women. She knows

Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×

how to perform physical exams with women who still have their clothes on, those types of things. She knows how to teach because this is her faith and she has learned how to work with it and to provide medical care. Because she has come from that community, she is able to provide that community care in a way that is relevant to that community,” said Flint. “As we open the doors to have more people who are of different cultures, ethnicities, and so on, we will find more solutions about education because they will bring that knowledge with them.”

Cindy Brach from the Agency for Healthcare Research and Quality asked the panelists how they train the navigators, who she referred to as the people on the frontlines who are being charged with improving the health insurance literacy of the population. She also asked what resources would have been helpful or could still be helpful for training the navigators. Mentesane replied that in Louisiana there was a missed opportunity of not involving the insurance industry because it is the expert on insurance. In addition, navigator training was minimal, she said, and some of the navigators themselves had never had insurance.

Brach then restated her question to focus less on the substantive knowledge about insurance plans and more on how the navigators were trained in health literacy principles to ensure their clients understood what they were being told. Mentesane replied that there was such a wide range of expertise and knowledge about health insurance, and simply teaching the less knowledgeable navigators about health insurance was difficult enough. Benjamin said that, in New York, navigators go through a 2-day classroom-based training from the Department of Health and take refresher courses and webinar-based trainings to maintain their certifications. Her network established a learning community that holds monthly meetings and does role playing as part of the instructional process. “You need to develop learning communities for the navigators so that they have trusted people where it is safe to be wrong or to make a mistake or to practice a way to get a concept across with the patient,” said Benjamin.

California has a health insurance exchange with a community advisory board and nine health insurance companies that were part of the exchange, explained Flint. The exchange provides a 5-day training for the navigators and quarterly follow-up meetings. These quarterly meetings are robust in terms of presenting challenges and developing solutions that could be taken back to the advisory board. Flint explained that navigators in California come from the communities they serve, so they speak the language, are part of the culture of the community, and understand the challenge of explaining this new concept of health insurance to their communities. The navigators also had the opportunity in the quarterly meetings to speak with their colleagues from other communities and cultures and work with them to develop solutions to common problems. She noted, though, that

Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×

this process takes time and resources to keep training current because the issues that arise change over time too.

Mentesane asserted that there is no support like that in Louisiana. Training there occurred via a one-time online course, then the navigators were on their own. She noted that the navigators in her program did use teach-back techniques because they were used to doing so in their roles as health care providers. Pollitz said the federal online training course’s module on health insurance is too basic, though that module is being revised to incorporate more information.

Ruth Parker, professor of medicine and public health from Emory University School of Medicine, noted that Pollitz and the three panelists all spoke about the complexity of health insurance and the challenges in producing something that is simple enough to understand so that people trust the information and will use it to enroll in a health insurance plan and use the services afforded by that plan. She wondered, though, about the role of transparency in getting to something that is understandable. “It seems to me that the transparency provisions, which are a part of the law, are actually a critical ingredient that is still lacking,” said Parker. She then asked Pollitz to explain what those transparency provisions might mean to the overall process and whether pushing toward that transparency is a part of what is needed to have health-literate processes.

Pollitz replied that there are two basic parts of the transparency requirement in the ACA. One is the SBC, which is supposed to make plan rules, determine the services covered, and make the deductible more transparent. She continued saying that the SBC, implemented in 2012, is supposed to be a simple, easy-to-read document, but it is actually not that simple. She suggested it might be useful to look at SBCs for a number of plans to see how the plans are different and what the best approaches would be to explain those differences to people. “I think it is still a very important tool that can be used, and to the extent that it is improved, I think it will help make clearer what the meaningful plan differences are, and it will help the intermediaries draw out from people what the differences are meaningful for them,” said Pollitz.

The other piece of the transparency requirement, one that has not yet been implemented, deals with the data that plans have to report about how well they are meeting their goals, such as enrolling people, retaining them, paying claims, and if they are part of a network, reporting the number of times people have to go out of network to receive needed care services. This aspect of transparency is important for multiple reasons, said Pollitz. One is that it would enable the development of Consumer Reports–type performance measures that consumers could use when selecting a plan. “People would look for the plan that pays claims reliably on time and almost never denies them,” she said as an example. Such performance measures would

Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×

help people recognize important differences in plans that nobody can see today without a great deal of digging. Transparency data would also promote change for the better, said Pollitz, because no plan would want to score poorly on these performance measures. Finally, transparency data would help insurance regulators with their oversight function. “It is hard now for them to see problems in plans,” said Pollitz. “You think about the billions of insurance transactions that occur every year, and regulators cannot possibly keep track of those problems.” However, she explained, if regulators received a spreadsheet of data every month, they could simply identify outliers. She noted that no plan is reporting these data yet even though they were supposed to be one of the first things implemented. She predicted it will be a long time before these data are widely available.

Benjamin said one of the problematic issues related to transparency from the patient perspective has to do with how little plans are disclosing about the composition of their provider networks. “You can find out provider by provider,” she said. “It is laborious and you always have to confirm by calling the provider’s office. You cannot rely on information from the plan, and it is a very time-intensive thing from the navigator and provider perspectives.” She noted there is a push from consumers and good government advocacy groups to have the government rate provider networks, and some states are doing that. After cost, network composition and size are the most important consumer concerns when it comes to selecting and using insurance, she added.

Virginia Brown from the University of Maryland Extension asked the panelists if they knew of successful methods for augmenting face-to-face communication in educating consumers about health insurance. She also asked for ideas on where to focus with regard to teaching consumers how to use their health insurance. Benjamin responded that she can think of nothing that works besides face-to-face communication, particularly when it comes to the hard-to-reach segment of the population that is still uninsured or when working with cultures for which having health insurance is still a novel experience. Flint replied that the answer to Brown’s first question depends on the audience. Young adults, for example, respond well to texts and other forms of communication, but for members of Flint’s generation, face-to-face interactions are necessary. In many ethnic communities, newspapers are a good avenue for communication, although that means translators are needed.

Davis added that, whatever the means of communication, health literacy principles have to be used in a way that does not overwhelm people. Teach-back is an essential component of any educational effort, said Davis. Mentesane agreed and said navigators need to be skilled in teach-back and health-literate communication. Pollitz noted that no matter how much someone thinks they know about their health insurance, there are always

Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×

new unknowns. “I am almost 60 years old and I keep finding new things that I cannot figure out about my health insurance,” said Pollitz. A solution, she said, would be to help consumers connect with experts so they know who to call for good explanations.

Lindsey Robinson, a pediatric dentist from rural Northern California and a representative of the American Dental Association, said the California exchange has decided that all health plans sold through the exchange must include a pediatric dental benefit, though in her opinion it was a glaring omission to not require adult dental coverage in all exchange plans. She asked Benjamin how New York included dental benefits in its exchange plans. Benjamin replied that individuals who are eligible for a subsidy through the exchange will want to enroll their children in Child Health Plus coverage because it includes dental coverage with no co-pays and no deductible. People who enroll their children in a family plan, mostly because of network concerns, will have a pediatric dental plan as part of the package. The bigger problem, she said, is that there are 11 dental plan coverage options for adults and they are all difficult to understand. In many cases, she said, it appears that these plans are not worth the money because they do not make clear what procedures they cover. Benjamin then conceded that although she has been practicing health law for 25 years, she does not understand all of the dental offerings and ramifications. Navigator training, she said, should include a deep dive into dental coverages so they can help guide people through these many choices.

Michael Paasche-Orlow from the Boston Medical Center and Boston University School of Medicine said he is offended by how little training these navigators get. “Ostensibly, at a certain level, in health care we aspire to have training,” said Paasche-Orlow. “This program, as successful as it has been, is basically an assault on the whole concept of social work and the role of having an empowered, trained, educated health practitioner at various levels. The idea of sending people out and saying they are from the community and they will understand how to communicate with people is just not enough. People have to be trained.”

He then related that he has had the opportunity to listen to some of the phone calls with navigators and observe in-person interactions. In those settings, what he has seen is that while the navigators have an agenda in terms of enrollment, the people they talk to often have questions about health care. With that as background, he asked the panelist if the navigators in their states are allowed to answer those questions and if so, what kind of training they receive to answer those questions. He also asked if, going forward, the navigators will need to be credentialed and certified. Pollitz responded by noting that the entire navigator program has been underresourced in most places, and too often they cannot see all of the clients who come in for help and even turn people away at the enrollment deadlines. Many programs have seasonal

Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×

workers who get laid off at the end of the enrollment period, and the programs then hire a new set of workers the following year. The ACA requires marketplaces to support their navigators out of the operating revenue of the marketplace, and the tax that all plans pay to be in the marketplace are supposed to fund all of that work, including in-person assistance. New York is doing that, but most states are not and neither is the federal government because money is tight, she said. In short, she said, the bandwidth and resources to add more training do not exist.

Paasche-Orlow asked about the hourly income of a navigator. Benjamin said wages in New York run from approximately $46,000 to $60,000 per year depending on the agency that employs them. Mentesane said her part-time workers who were not part of her clinic staff were paid approximately $15 an hour. Referring to Paasche-Orlow’s comment about social work, Mentesane noted she is a social worker by training and explained that the individuals hired to be navigators did not have the skills to dig deeper to find out what issues their clients were having in understanding the enrollment process. With $80,000 to fund her clinic’s program and pay for promotions, mileage, and salary, there was little left to pay for additional training. She added that even the federally qualified health centers in northern Louisiana did not employ full-time navigators. Instead, they trained a frontline person on staff who served as a part-time navigator. In addition, none of these centers were funded to do outreach, only enrollment. Davis added that California’s navigator program was also funded only to do enrollment, not outreach.

Pollitz said that Paasche-Orlow’s premise is correct. “This should be, and I think it was intended to be, a profession,” said Pollitz. “These were supposed to be professionals who knew what they were doing, who could develop relationships and help people year after year, and provide valuable feedback to the policy makers so that they could fix the program.” She said that of the 5,000 navigator programs, a couple hundred help more than a thousand clients during each open enrollment period. Those programs, which she characterized as big but not huge operations, provide about 80 percent of all marketplace in-person assistance during open enrollment, and they are starting to develop a more talented, more resourceful, and more professional cadre of navigators. The other, smaller programs, which help perhaps 50 people during open enrollment, are barely surviving. Flint explained that her program chose not to hire navigators, but to partner with organizations to enroll people. These organizations have relationships in their communities, know how to get people into the system, and are around to continue answering questions going forward.

Catina O’Leary, president and chief executive officer of Health Literacy Missouri, said her organization provides technical support for some 900 organizations belonging to the Cover Missouri Coalition, and that sup-

Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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port includes training. She asked the workshop participants to be patient because she would be talking about training in a later session, but noted that training in Missouri does include health literacy training and support. O’Leary added that the Missouri Foundation for Health has invested heavily in developing training approaches and that much of it will be transferable, generalizable, applicable, and sharable.

Amy Cueva, co-founder and chief experience officer of Mad*Pow, said she works with many insurance companies and they are aware of how complex health insurance is and how hard it is to explain concepts such as co-insurance, deductibles, and co-pays in language the public can understand. Most people, she added, cannot visualize how these concepts apply in real life and affect their finances. She suggested there is a need for creative mechanisms to help people finance their deductibles.

Changing the subject, Cueva made a point about the Internet and how quickly access and capabilities are changing. “When we are designing for the future, we need to consider what is going to be best for the demographics we are serving,” said Cueva. She noted, for example, that “the aging population has been late to the digital party, but they are the fastest adopting segment. They are becoming party animals.” In urban settings, people are now more likely to have a mobile phone than a landline at home. “We cannot minimize the opportunity to engage people digitally just because they may have been inept a few years ago,” she said. Davis agreed to a point, but said that some people still want a paper manual and some people still want to talk to a person when they need help with insurance. Benjamin added that one thing a navigator needs to do is show plan-by-plan comparisons, but doing so will be difficult on a laptop or desktop computer, let alone a mobile phone. In addition, the Internet may be accessible and second nature to some communities, but not for others. “If we are talking about the ‘last mile’ of the eligible but unenrolled, they are not the party animals,” said Benjamin, referring to Cueva’s characterization of older adults. “They are the non-party animals, the people who do not want to go to the party and have to be dragged to the party.”

Cueva responded that regardless of the medium of communication—verbal, printed, or digital—the goal should be to close the gap between what people know and understand and how things really are. “That is where we are struggling no matter the medium,” she said. Flint then reminded everyone of an early comment about the individual nature of this problem. “We have to meet people where they are. That is how we have to communicate with them.”

Brach then asked if part of a navigator’s training includes how to talk about the tax penalty for not having insurance. Pollitz said the penalty, which has increased as it has phased in, is bringing more people in to at least look into what they need to do. At the same time, the tax component

Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×

has added a new layer of complexity to the process. “You not only have to know the tax rules about what the penalty would be and what it would take to be exempt, but the whole tax treatment of reconciling your premium tax credit, which I think is still a problem,” said Pollitz. The navigators, she added, are struggling to understand, let alone explain, the tax consequences of the ACA, and she suggested that tax assisters are another professional community that should be enlisted to help with enrollment. The complexity of claiming the tax credit based on projected income is leading to individuals having to repay those credits, which does not help people to stay enrolled. Flint agreed this is a real and growing problem.

Earnestine Willis from the Medical College of Wisconsin asked the panelist for some idea on how much money is being allocated per capita for their programs. Flint replied that her organization, Black Women for Wellness, is part of a 14-agency coalition put together by the California Black Health Leadership Network, which received $1.2 million to do education and outreach to cover the entire state. Of that $1.2 million, her organization received approximately $80,000 to serve the 1 million people in her office’s catchment area. Benjamin’s program received $5 million to reach the 3 million uninsured people in New York. Other programs, she noted, received $200,000 to $1 million. Mentesane said the $80,000 her program received was intended to cover a population of about 450,000 in northwest Louisiana, but people from eastern Louisiana were driving as far as 120 miles to her clinic to get help enrolling. Davis added that the new governor of Louisiana has decided to accept Medicaid expansion, and the state will now be attempting to enroll an additional 375,000 people.

Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
×
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Suggested Citation:"3 Challenges Faced in Helping the Uninsured Get and Use Health Insurance." National Academies of Sciences, Engineering, and Medicine. 2017. Health Insurance and Insights from Health Literacy: Helping Consumers Understand: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/24664.
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Since the passage of the Patient Protection and Affordable Care Act (ACA), health care reform has created major changes in the U.S. health care system. The ACA has brought millions of people into the system who had no previous access, and many of these newly enrolled individuals have had limited experience navigating the complex and complicated U.S. health system.

In July 2016 the National Academies of Sciences, Engineering, and Medicine convened a public workshop to examine health insurance through the lens of health literacy, focusing on literacy related barriers to information and coverage as well as on possible solutions. Participants discussed the role of health literacy in accessing health care and remaining in treatment; delivery and financing system reforms that affect organizational health literacy; and quality and equity considerations. This publication summarizes the presentations and discussions from the workshop.

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