On a blistering cold Chicago night in November 2013, I met with Lorena, a 25-year-old uninsured Mexican-American bartender whose income fell below $18,000. Lorena belonged to a group that health policy experts refer to as “newly-eligibles,” single able-bodied adults without children living in poverty who now qualify for Medicaid thanks to the Affordable Care Act.
Lorena could have enrolled herself with relative ease. At the time, outreach efforts for the ACA were in full swing. In her home neighborhood of Pilsen, health navigators, insurance brokers, and nonprofit organizations were at soup kitchens, schools, taxi stands, and social service organizations spreading word and enrolling thousands. Our conversation, however, revealed something surprising.
“Do you plan on applying for health insurance through the Affordable Care Act?” I asked sitting across from her at a south loop coffee shop near the bar she worked.
“No,” she bluntly replied.
“Why not?” I asked.
“Mainly because I don’t trust government. I think anything they’re going to be putting out is flawed.”
“What makes you so distrustful?” I asked.
“My friend got these really strong stomach pains and almost fainted so I took her to the county hospital. We were there sitting for hours in the emergency room! The nurses were all hanging out at the desk giggling and laughing and talking to each other drinking their coffee and my friend is bent over like this [Lorena hunches over as she speaks] ready to pass out! I yelled at one of them, “are you gonna take care of her?” They came back to me laughing [telling me], “I’m sorry, we’re actually really professional.”
“What happened to your friend?”
“She was really dehydrated and had a bad urinary tract infection. She spent the night at the hospital which cost her $2300.”
“That experience made you distrustful?”
“Yeah, it’s terrible. When I look at the actual doctors [at the county hospital], they’re very professional and educated but everything else is downhill. With these county clinics, the staff sucks! It’s like they’re hiring just anybody.”
Being Uninsured a Conscious Decision
From November 2013-April 2014, I interviewed 45 uninsured adults like Lorena (between 21 and 35, single, without children, low-income) as part of an ethnographic study of the uninsured in the age of the Affordable Care Act. To my surprise, two-thirds refused to enroll or even inquire about the ACA because of their cynicism in government or the quality of health care provided by Cook County. For people like Lorena, their lack of health insurance did not stem from a lack of outreach or access. Being uninsured was a conscious decision to distance themselves from government and health care agencies.
As outreach efforts continue in Cook County and elsewhere, it is important for health care professionals to remember that the ACA is just one of many arms by which government shapes the lives of the uninsured working poor. For Latinas like Lorena, many of whom have undocumented family members, the ACA is part of the same government body that is deporting family members. For many of my Black respondents, the ACA was seen as part of the same government body whose police force is excessively using deadly force against Black citizens.
Although Medicaid enrollment has exceeded Cook County’s expectations, nearly 600,000 remain uninsured. It’s possible that people like Lorena, with distrust and cynicism toward government and health care, will be the most difficult to enroll.
Lorena’s story highlights the importance of bringing more nuance and strategy to ACA outreach efforts. For cynics of the ACA, simply informing them of their options is not enough to persuade them to enroll. Instead, cynics need to have their opinions validated (no matter how inaccurate or outlandish they might appear) and be empowered to enroll.
Convincing the Skeptics
Two weeks after my interview with Lorena, I observed Abram (a health navigator) put these face-to-face outreach strategies to work during his interaction with Joyce, a 32-year-old cynical and uninsured Black woman. It was family fun night at a Boys and Girls Club in Pilsen. Joyce brought her niece to the event and was sitting at a table eating a sandwich when Abram approached and introduced himself.
“Hi, I’m Abe.”
“Nice to meet you, I’m Joyce.”
“I’m here working for an organization and we’re trying to sign people up for the ACA.”
“Really?” asked Joyce.
“Yes, do you have health insurance now?”
“No.”
Abe pulled out a bright yellow pamphlet and said, “That’s ok. I can assist you with enrolling. In the end, it is completely up to you to make that final decision if you want to enroll in anything at all. I can start you off to see what’s out there. There’s Medicaid, which is completely free public assistance. With the new Medicaid, insurance companies can no longer deny you for pre-existing conditions.”
Joyce raised her eyebrow asking “Really?”
In response, Abe raised both hands in the air to gesture he meant no harm stuttering “I, I, I, don’t want to make any promises because, obviously, we have to see what plan you are eligible for…”
Joyce interrupted, “But that really means a lot to me because I’ve been denied lots of things in the past.”
Abe continued, “I’m going to leave you with my information [hands her his business card]. [Abe pulls out another sheet of paper] This is a list of documents that we are going to need in order to fill out your application, and I can actually sit down with you, with your permission, to go through the entire application. That is something you could do by yourself if you wanted to, or I could sit down with you and assist you.” One week later, Joyce made an appointment with Abe and enrolled.
Like Lorena, Joyce was skeptical that the Affordable Care Act would benefit her. In my interview with Joyce, she shared frustrating stories of seeking medical treatment for health problems only to be told she was ineligible for assistance.
Abram, however, never discounted or diminished Joyce’s skepticism. Nor did he make any promises that he could not keep. Instead, he validated Joyce’s concerns and reminded her that she was the one in control of the interaction, that she could walk away at any time.
Abram did not have to persuade Joyce to trust government or even health care providers. He just had to convince her to trust him, and he was successful by validating her concerns and empowering her.
The Outreach Road Ahead
As the ACA enters its third year, it is now entering a phase where those with the easiest access have enrolled and where many of the remaining uninsured are the hardest to reach. These include many uninsured adults whose negative experiences with government or health agencies have formed the basis of their outlook toward the ACA.
With face-to-face outreach strategies designed to validate and empower the low-income uninsured into enrolling, organizations conducting outreach for the ACA may be able to continue closing the cracks in the Illinois health insurance safety net. As Joyce said in recalling her interaction with Abe, “He didn’t try to sell me. He just say, once we do this it’s strictly up to you just because you talk with us and give us your information doesn’t mean you have to sign up, the ultimate decision is up to you.”
Robert Vargas
Assistant Professor of Sociology
University of Wisconsin-Madison
Robert is currently conducting research on the Affordable Care Act in Chicago, and the publications from his health care research are available at his website www.robvargas.com.
Chicago needs a plan to sign up its uninsured; here's what to do
Health care coverage has an impact on the economic well-being of lower- and moderate-income people; therefore enrolling the uninsured should be considered a key economic strategy for Chicago and all of Illinois. Unfortunately, this isn't the case.
Sixty-three percent of Illinois' working population eligible for a private path to health coverage under the Affordable Care Act is still uninsured, with large swaths residing in Chicago (see a breakdown of the numbers across Illinois here).
Given those statistics, Mayor Rahm Emanuel needs all hands on deck—from business leaders to health insurance brokers, from community institutions like public libraries to religious leaders—to encourage people to sign up.
Open enrollment for 2016 health insurance coverage starts Nov. 1, so the city is in serious need of a plan. We propose a Commission for Healthy Chicago, similar to the mayor's effort on violence prevention, comprising city staff and community, business, faith and health care leaders to build a cross-sector strategy for outreach and enrollment. Emanuel can improve the economic security of working-poor Chicagoans simply by putting the clout of his office behind such a strategy.
Chicago shouldn't expect the state to lead. In the midst of the state's fiscal disarray, Get Covered Illinois has lost most of its staff and has stated it will rely more heavily on “partners” such as providers, brokers and nonprofits for enrollment support. GCI's limited capacity can't get the job done; nor should the city and state expect nonprofits and health care providers to fill the gap in funding or leadership.
The Task Ahead
With only 37 percent of the estimated 942,000 marketplace-eligible residents having enrolled, Illinois ranks 20th out of the 37 states that operate their marketplaces using the federal HealthCare.gov website.
Here's another way to look at it: Two years into ACA's health insurance efforts, almost two-thirds of Illinois' marketplace population—the lower- to moderate-income people for whom the ACA was created—remain uninsured. Almost half of them are eligible for a tax credit or subsidy to make their plan more affordable.
Overall, about 73 percent of the nearly 600,000 people who are eligible but still uninsured live and work in the Chicago metro area. Within these areas there are significant proportions of the population who do not speak English as their primary language. In nearly half the metro area, at least one-third of the population speaks Spanish or another non-English language. In several of these areas, primarily in Chicago and suburban Cook County, more than 50 percent do not speak English as their first language. Notably, the areas with the highest proportion of non-English speakers are the same areas with the lowest share of eligible population enrolled.
Other states have successfully enrolled low- to moderate-income people in the ACA health insurance marketplace. They have done this through:
• Use of data to target communities with large, underserved marketplace-eligible populations.
• Exploiting numerous local avenues to provide extensive education and outreach, including through events and local media, to directly connect the uninsured with help to enroll in coverage.
• Meaningful collaboration with brokers and the small-business community.
A healthy Chicago economy goes hand in hand with a healthy population that is ready to learn, work and is not burdened by health care costs. Let's not let Chicago and Illinois fall behind when it comes to covering working families.
This article originally appeared in Crain's Chicago Business.
Barbara Otto
CEO
Health & Disability Advocates
Redoing Redes: Strengthening Communication Procedures in the Illinois Medicaid Redetermination Project
The Illinois Medicaid Redetermination Project (IMRP) is erroneously suspending vital medical care for people who remain eligible. Since the rollout of the IMRP in early 2013, the program has been plagued by inadequate communication from the state that leaves consumers confused and ultimately without healthcare. Consumers report that they are not receiving the required notices by mail and when they call with questions, frontline state staff cannot provide answers. Because of the state’s ineffective communication protocols and inadequate employee training, rightful Medicaid beneficiaries are in the precarious situation of being unable to fill their prescriptions, go to the doctor or receive treatment. The purpose of the IMRP is to save state dollars by trimming the Medicaid program of those who are no longer eligible, not cut people who still deserve services.
Letters Lost in the Mail
Medicaid beneficiaries are cut simply because they never received their redetermination notices in the mail. For example, Health & Disability Advocates worked with a mother whose child had been dropped from Medicaid because IMRP sent the notice to a non-existent address. The fact that IRMP sent the letter to an incorrect address on the same street where the family lived suggests that it was a clerical error. In this situation, a young adult dealing with serious mental illness could not access medication and treatment, because the state, not the individual made an error. Sudden lapses in care can pose serious consequences for people who rely on these supports for their physical and mental health.
This is not an isolated instance. A survey of case managers working with older adults and people with disabilities found that the IMRP fails to adequately notify people of their redetermination responsibilities and inform them when they are bounced from the program. Many get the bad news when they attempt to fill prescription or go to the doctor and are told that they are no longer covered. People deserve clear communication from the state telling them they are no longer covered and the steps to get reinstated.
Confused and Not Covered
Even in cases where Medicaid recipients do receive notices, many consumers find the letters are hard to understand and filled with jargon. Given that the intended audience has never before been required to submit to annual redeterminations and may also have lower literacy levels, the letters must be crystal clear. Reports from case managers suggest the letters are confusing. One case manager surveyed noted “clients do not understand what documents they need to submit with the form and whether they need to submit anything.” With the potential for people to lose their health coverage, the consequences of this confusion are severe.
IMRP’s own data reveal their communication shortcomings. According to May’s Medicaid redetermination numbers, 81% of cancellations are due to a lack of response. Being cancelled doesn’t mean a person is ineligible. In fact, a substantial portion of these clients should still be receiving services. Of those dropped, 1/3 were reinstated within three months. In FY 2015 alone, this translates into 238,025 people being incorrectly cut from Medicaid, and this number could be even higher. People who are less frequent healthcare users may learn of their cancellation when they attempt to schedule a doctor’s appointment. With people who deserve Medicaid cut from the program, the IMRP is not achieving its main objective of reducing state expenditures by eliminating those who no longer qualify. Cutting eligible people will actually result in higher costs. Without access to primary medical treatment, people will resort to more costly emergency room care for conditions that could have been managed or even prevented.
Matters get worse when consumers call state workers for clarification, because frontline staff members are often not fully informed themselves. In the above-mentioned case of the mother fighting for her son’s coverage to be reinstated, her interaction with the IMRP hotline was unhelpful and hurtful. The representative said there was nothing more she could do and blamed the family. Stateline workers should be fully trained to provide answers; anything less only increases confusion and frustration.
The Path Forward
The state must develop plain-language notices that explain redeterminations and their importance while outlining the specific steps to keeping coverage. This would not be a new undertaking. State officials have previously brainstormed ways to create simple, more consumer friendly forms. Unfortunately, the furor around budget deficits and service cut threats has drowned out the push for clear communication standards. Even worse, continuing to deemphasize this issue will leave many rightful Medicaid recipients suddenly without coverage. Communication protocols and state staff should support individuals in maintaining their vital connection to healthcare, not create hurdles that effectively jeopardize emotional and physical health. State officials must restart the discussions on clear notices and broaden the conversation to include improved training for frontline staff. These reforms will go a long way towards supporting the IMRP’s original objective of eliminating wasteful spending while also keeping those who still deserve coverage connected to care.
From Getting Insurance to Actually Using It
After the 2015 Open Enrollment Period 347,300 Illinoisans purchased plans through the marketplace, and 541,000 people have enrolled in Medicaid since its expansion in 2014. While connecting individuals to coverage is good news, the newly insured are often overwhelmed by having to navigate the overly complex healthcare system and understand the related insurance and medical jargon. This confusion and lack of experience counteracts one of the healthcare reform law’s major goals: to reduce medical costs by increasing access to primary care. Obtaining coverage will not offset a lifetime of avoiding the doctor’s office and visiting the emergency room for primary care. The newly insured must learn how to find a doctor, fill a prescription and read a prescription label. Without that, they are subject to poor health outcomes and high costs. The newly insured must gain health literacy which can only happen through the combined efforts of consumers, communities, providers and governing bodies.
What is Health Literacy?
The Centers for Disease Control and Prevention define health literacy as the degree to which an individual can obtain, process, communicate and understand health information and services. People with low health literacy are more likely to be uninsured. Similarly, uninsured individuals show lower health literacy scores compared to those receiving employer-based coverage.
So Why Does Low Health Literacy Matter?
It is not altogether surprising that the uninsured and those with low health literacy are less likely to seek preventative care; more likely to experience poor health outcomes; and more likely to encounter higher medical costs. According to the Kaiser Family Foundation, only 1 in 3 uninsured adults said they had a preventive visit with their physician in the previous year, and uninsured adults experienced higher mortality rates than the insured. An Institute of Medicine report found a similar pattern of healthcare use for those with low health literacy, stating this group was less likely to seek preventive care. Research also found that lower health literacy in Medicaid managed care settings is connected with higher mortality. This shows that the uninsured and people lacking health literacy interact with the healthcare system in similar ways: poorly. Using the healthcare system is something people must learn. Giving someone a computer does not mean they know how to type. In the same way, connecting a person with healthcare will not alter their level of health literacy.
Old Habits Die Hard. The newly insured will continue receiving care in ways most familiar to them, which can translate to using the emergency room for non-emergencies. According to the Oregon Health Insurance Experiment, individuals who received Medicaid coverage increased their emergency room use by 40%. Asked to comment on the results, the state director of policy and programs for the National Association of Medicaid Directors alluded to the importance of promoting health literacy in the newly insured. She said, “this is not something that is unexpected” and “the key to getting inappropriate costs down for all patients is educating people about where they should go when it’s not an emergency.”
How to Address Health Literacy
Government Efforts
State initiatives, including an Illinois Emergency Room Diversion Grant are acknowledging the importance of patient education and using outreach to reduce ER use. In Illinois, hospital staff led outreach explaining the proper use of the ER and offered a 24-hour nurse triage line as an alternative. Meanwhile, Maine is targeting ER super-utilizers through community care teams that offer intensive case management including home visits and health coaching. Recognizing state efforts like that of Illinois and Maine, CMS listed patient education as a recommended component of programs targeting ER super-utilizers.
Health Professional Efforts
Beyond education on how to use their health insurance, health professionals can improve the usability of health services by reducing medical speak in patient interactions. Healthcare systems can also create plain-language pamphlets for patients to reference after leaving the doctor’s office. By speaking with patients in a relatable manner and sharing usable information, doctors better position healthcare consumers to adhere to medical recommendations.
Northwestern University’s Division of General Medicine and Geriatrics focuses on improving engagement between providers and patients and has developed plain-language materials that communicate complex health topics. For example, researchers created written information and videos available in Spanish and English that teach patients diabetes self-management. The modules use simple language and rely on pictures to communicate aspects of diabetes care, such as how the disease can impact a person’s eyes. By using these materials when interacting with diabetes patients, health professionals communicate vital aspects of care in an accessible manner, increasing the likelihood that patients adopt the healthy behaviors.
Community Health Literacy Efforts
The Be Covered Illinois campaign is promoting health literacy by generating easy-to-read written and online materials, creating short videos explaining critical concepts and utilizing community partnerships to expand the reach of their communications. By producing written fact sheets on finding the right doctor and developing web content on using your coverage Be Covered empowers the newly insured with the knowledge to navigate health insurance and health care systems more effectively. Be Covered’s Dr. Lopez video series, presented in both English and Spanish, addresses health insurance topics, chronic disease, prevention and more. Be Covered broadens the reach of their education efforts by partnering with 82 organizations in Illinois, including Illinois Health Matters, that share information and materials with their own constituencies. As part of that effort, Be Covered provides regular content for social media and shares copies of consumer friendly resources free of charge to partners.
Illinois Health Matters recognizes the importance of not only getting insurance but using insurance. The website features resources such as a Medical Cost Look Up, that allows consumers to estimate out-of-pocket costs for medical services and a resource on Immunizations and the ACA, outlining the vaccines children and adults can access for free because of healthcare reform. The website also has a tip sheet titled What to Know About Provider Networks, explaining steps consumers can take to avoid high medical costs associated with out-of-network care. These are just a few examples.
Illinois Health Matters is taking on the challenge of supporting a more health literate population, but we can’t do it alone. Join us. One great way to start: subscribe to our newsletter to stay informed and share the knowledge with your clients and coworkers. The healthcare community can achieve the vision of the Affordable Care Act, but only through the joint efforts of providers, policymakers and organizations supporting health literacy.