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How Have State Medicaid Expansion Decisions Affected the Experiences of Low-Income Adults? Perspectives from Ohio, Arkansas, and Missouri

Introduction

As of May 2015, 30 states have adopted the Affordable Care Act (ACA) Medicaid expansion to low-income adults, creating a new coverage option for millions of adults who were previously excluded from the program. In the remaining 21 states that have not adopted the expansion to date, many poor uninsured adults fall into a coverage gap—they do not qualify for Medicaid and earn too little to qualify for the tax credit subsidies to purchase Marketplace coverage, which begin at 100% of the federal poverty level. This brief examines the experiences of low-income adults in three states that have made varied Medicaid expansion decisions: Ohio, which adopted the ACA Medicaid expansion, Arkansas which implemented the Medicaid expansion through a “Private Option” waiver, and Missouri, which has not adopted the expansion.

This report is based on 10 focus groups conducted with 85 indi  viduals by the Kaiser Commission on Medicaid and the Uninsured and Belden Russenello Strategists in Columbus, Ohio; Little Rock, Arkansas; and St. Louis Missouri during February and March 2015. The groups in Columbus were conducted with previously uninsured adults who enrolled in the ACA Medicaid expansion and the groups in Little Rock were conducted with previously uninsured low-income adults who enrolled in the Private Option waiver. Through this waiver, Arkansas uses Medicaid funds to subsidize the purchase of coverage through the Marketplace for low-income adults who would be eligible for the Medicaid expansion. The groups in St. Louis were conducted with uninsured low-income adults who would be eligible if the state adopted the Medicaid expansion.

In all three locations, separate groups were conducted with men and women to explore gender differences in experiences being uninsured and gaining coverage, and women’s access to well-woman care and contraception. Moreover, in St. Louis and Little Rock, separate groups also were conducted with African American men and women, to explore potential racial differences in experiences, given that African Americans are disproportionately impacted by state Medicaid expansion decisions. Across the groups, participants varied in age, family status, employment, and education (Appendix Table A).

Key findings from the focus groups are summarized below, including participants’ financial situations and health status; their experiences seeking health insurance after the ACA was implemented; the impacts having or going without health insurance has on their ability to access care and their broader lives; and their views on their state’s Medicaid expansion decision.

Key Findings

Finances and Health

Participants indicated that it is difficult to find a job that pays an adequate wage and offers benefits. The majority of participants were employed on at least a part-time basis, although more participants reported part-time employment than full-time employment. Those working were employed in a range of occupations and industries, including service, retail, construction and education, and several participants were self-employed. Although many were working, few had access to employer-sponsored coverage through their job, and those that did indicated that the coverage was unaffordable due to their limited incomes. A number of the participants had been laid off from full-time jobs that provided benefits as a result of downsizing or outsourcing and were now in either part-time positions or unemployed and seeking work. Several participants reported that they were not working because they were caring for family members, including several who were caring for spouses, children, or other family members with disabilities or significant health problems. Overall, participants noted that, despite continued improvements in the overall economy, the current job market remains challenging. They said that, while jobs are available, they often are low-wage, part-time positions that do not offer benefits. Participants felt that full-time jobs with adequate pay and benefits are very difficult to find and that there is significant competition for these positions. A number of participants commented that it is particularly difficult for mid-career individuals in their forties and fifties to find jobs because employers would rather pay lower wages to recent graduates. A few African American participants also felt that racial prejudice impacts the job market within St. Louis.

“Finding the full-times with benefits have been rare and there’s a lot of competition for the ones that are. And, being in the population that is on the older side—I’m not old yet, but older than the people right out of college—there is a lot of competition for those.” Dawn, St. Louis

“There are a lot of part-time jobs, but as far as the dream 40-hour a week with benefits and all that type of stuff, I don’t see that.” James, Columbus

A number of women identified challenges to fulfilling their roles as primary caregivers along with their other responsibilities. In addition to their roles and responsibilities as mothers, several of the women said they were caregivers for other family members, including spouses and aging parents, or friends. They noted that, in this role, they often need to take time off to care for someone who is sick or to attend medical appointments and that they are responsible for following through to ensure individuals obtain recommended services. They described the stress they experience and difficulties they face juggling these responsibilities with providing for the family. For example, because most are in low-wage jobs that do not provide sick leave, time taken away from work for appointments or to care for a sick child results in lost wages and potentially other consequences such as reductions in hours or increased risk of losing a position.

“Because there would be days when I’m at work and then I get a call from the school that he’s being rushed to the ER for an asthma attack. So the times that I would have to leave to take care of him, I know that that played a big effect on when they were trying to make the cuts at work. They were like, well, we know she’s not going to be here so she can be the first one to go.” Angela, St. Louis

Many of the participants said they struggle to meet all their basic expenses. Participants cited a range of necessary monthly expenses, including housing, transportation, utilities, childcare, food, and clothing. They noted that they try to cut back on expenses where possible, for example, by keeping the thermostat low to reduce heating costs, eating less, and moving in with family members to reduce housing costs. A number of participants also said that they frequently rely on help from family members, food pantries, churches and charities, and programs like food stamps to cover their expenses. However, many felt disappointed in themselves for having to rely on such help. Most participants said they juggle bills from month to month. Some indicated that due to their limited incomes and unexpected expenses, like car repairs, they have fallen behind on bills, including house and car payments, and are now at risk for losing their vehicle or home. Many participants also reported large outstanding medical debt stemming from care they received while uninsured.

“I used to have my own place, but I moved in with my parents now. So if it wasn’t for my parents paying for all of that and I just pay for my car and the other things, then I would be short.” Kiasha, St. Louis

“We gave our car back and just went and bought an old used car. We paid cash for it because we couldn’t afford the car note anymore.” Jacqueline, Little Rock

“They have food shelters… that was a big problem for my household, there just wasn’t enough left over to eat.” Chad, Columbus

Participants said that the financial pressures they face have negative impacts on their health, well-being, and relationships. Finances are an everyday worry for participants that causes them significant stress and anxiety. Participants described how their financial concerns lead them to feel depressed, insecure, and worried about their future as well as guilty and embarrassed about not being able to provide all the things they would like to for their family. Some indicated that this stress contributes to strains on their relationships with family members. A number also felt that the financial stress has had negative impacts on their physical health, for example, by exacerbating problems with high blood pressure. A few also pointed out that it is very difficult to eat healthy because of the high cost of fresh fruits and vegetables and said that they had gained weight and become less healthy as a result of eating cheaper food options. 

“It put a strain on our marriage, but we managed. Still married, never separated. But it’s hard. We got along otherwise but when it came to money, it’s hard.” Angela, Little Rock

“I can’t afford to eat healthy anymore. I’m putting on weight and I know it’s because of my diet. Fresh vegetables and fruits, who can afford them?”  Kathy, St. Louis

Most participants view themselves to be in good or excellent health, but many have ongoing physical or mental health needs or problems. These included chronic physical conditions like high blood pressure and diabetes as well as mental health problems like depression, anxiety, and bi-polar disorder. In addition, some participants had undiagnosed pain and some had experienced major health problems, including cancer. Many participants said they had dental and vision needs, particularly dental pain. A number indicated that when their health problems are not well-managed they contribute to missed days at work and/or difficulties caring for children or other family members. Some participants also said their job choices are limited due to their health conditions, for example, limiting their ability to work in jobs that require manual labor or long periods of standing.

Experiences Seeking Health Insurance

Participants varied in the length of time they were uninsured. Some had been uninsured for just a few months while others had been uninsured for many years. Most participants previously had health coverage prior to becoming uninsured. A number had been covered through an employer-sponsored plan. Some of these participants indicated that they were offered COBRA upon losing their job and the coverage, but that it was not affordable. A few had previously purchased a private plan on the individual market but noted that they were not able to maintain the coverage due to cost. Some had been covered as a dependent through a parent’s plan and then aged out of coverage. Finally, some participants had previously been covered by Medicaid either as a child or during a pregnancy and then became ineligible when they aged out or after the post-partum period.

Enrolling in Coverage in Little Rock and Columbus

In Little Rock and Columbus, some participants were aware of the new coverage options and actively sought out coverage; others enrolled after coming across enrollment resources or events in the community, or were automatically enrolled. Some participants had heard about the new coverage options through the news and media and actively applied for coverage either online or by telephone after the ACA was implemented. Others were not aware of the new coverage options but ran across enrollment resources or events in the community, for example at a doctor’s office, hospital, clinic, or state fair, and enrolled with the help of an assister. In addition, some participants reported that they were automatically enrolled in Medicaid as a result of applying for another assistance program like the Supplemental Nutritional Assistance Program (SNAP or food stamps). Arkansas conducted facilitated enrollment of individuals already enrolled in SNAP, since the state could identify these individuals as eligible for its Medicaid expansion Private Option based on the information already on file through the SNAP program. These individuals received a letter informing them that they were eligible for Medicaid, which they signed and returned to complete enrollment. A number of participants in the Little Rock groups recalled receiving this letter. Participants reported varied enrollment experiences depending on how they enrolled. Those who received the letter in Arkansas or who received assistance with enrolling generally described the process as easy. However, some who enrolled on their own reported some challenges with the website or long waits to speak to someone on the phone.

“I did mine at the clinic…They actually had people… sit there with the computer and do it with me.”  Jimmie, Little Rock 

“Well, I was notified by the state that I was eligible. I was just so surprised…Because of another program that I’m in, they said that everyone in that program automatically qualified.” Russell, Little Rock

“I was applying for food stamps and one day it came in the mail, and I was like ‘wow.’” Chad, Columbus

Participants reported mixed experiences with selecting a managed care plan after enrolling in coverage. As noted, under its Private Option waiver, Arkansas uses Medicaid funds as premium assistance to purchase coverage in Marketplace Qualified Health Plans for expansion adults. Currently expansion adults in Arkansas choose among two plans after enrolling in coverage. A number of participants reported that they selected a plan during the first year of implementation because that plan chose to offer dental and vision coverage in addition to required benefits. However, this plan stopped offering dental and vision in the second year of implementation, and a number of participants indicated that they now want to switch to the other plan, which has better brand name recognition and a broader provider network. In Ohio, individuals select a Medicaid managed care plan after enrolling in coverage. Some participants said it was challenging to compare the plans. They indicated that differences in benefits and provider networks as well as brand name awareness impacted their choice. A few participants had existing relationships with a provider and chose based on which plan their doctor accepted; others said they had to change doctors because a doctor did not accept their plan.

Remaining in a Coverage Gap in St. Louis

Most of the participants in the St. Louis groups had tried to obtain insurance since the ACA was implemented and were upset and disappointed to learn that they did not qualify for Medicaid or tax credit subsidies to purchase a Marketplace plan. The majority of participants said they tried to enroll online, while others said they tried to get assistance through a call center. When they applied, participants learned that they did not qualify for Medicaid or assistance with purchasing a Marketplace plan, and many understood that individuals at higher incomes did qualify for tax credits to purchase Marketplace coverage. Some participants said they were quoted the prices of the Marketplace plans without a subsidy, which they said were unaffordable. Participants said that they thought they would be eligible for an affordable coverage option based on the media and outreach encouraging individuals to enroll and felt frustrated, upset, and confused when they learned that they did not qualify for help. Many also mistakenly believe that they will be subject to the tax penalty for not having insurance, and felt it is unfair that they will be penalized when they do not have any affordable coverage options available to them.

“It was really disappointing. I waited so long to wade through it all and then finally talked to somebody after sitting online for an hour and a half and I couldn’t believe it; even though I don’t make much money and had debts, there was nothing below $400.” Kevin, St. Louis

“So I called that hotline and they said, well, you don’t make enough money for this, but then you make too much money for Medicaid. So, I’m in this donut hole where I don’t fit anywhere.” Christina, St. Louis

“I was surprised because when you hear about it and they say it’s for everybody, everybody, everybody… no, actually no, it’s not for everybody.”  Tanya, St. Louis

Personal Impacts of Health Insurance Coverage

Participants in Little Rock and Columbus were asked to recollect their experiences being uninsured before they enrolled in Medicaid expansion coverage and how their experiences changed after gaining coverage. In St. Louis, participants were asked about their current experiences being uninsured. Key themes about how being uninsured and gaining coverage impacted individuals’ personal lives included the following.

While uninsured, participants delayed or went without needed care, sometimes leading to the worsening of conditions. All participants said that they tried to avoid obtaining care while uninsured because of the cost, which sometimes led to the worsening of conditions that ultimately resulted in the need for more intensive higher-cost care, missed work, and disruptions to family relationships. They noted that they would put off seeking care until a condition became unbearable, at which point they would either go to an emergency room or clinic. Participants said that they would try to use clinics and urgent care centers to minimize cost, but that sometimes the only source of care they could turn to was the emergency room, particularly if they had waited to seek care until a condition became severe. Many noted that after obtaining care they would try to negotiate the bill with hospitals. While some were successful in having a share of their costs waived, others had significant debt from emergency care they received while uninsured. Participants also said they would go without prescription drugs, take less than the prescribed amount, or use expired or other family members’ medications due to cost and would try to rely on home remedies, pharmaceutical discount programs, and over-the-counter drugs to the extent possible to address their needs.

A number of the women reported that, even when they were uninsured, they were able to access contraception and some well woman care and screenings through local programs and clinics. Women reported relying on a range of resources to obtain well woman care and contraception while uninsured, such as clinics, including Planned Parenthood clinics, and local women’s health programs that provide free mammograms and other screenings. Some participants said they had longstanding relationships with an obstetrician/gynecologist who would provide care at a discounted rate. Participants also indicated that they generally could obtain contraception if they sought it and that providers discussed long-term contraceptive methods with them. However, a few participants said they were going without regular well-women care and preventive screenings. Moreover, those receiving care through clinics and free health programs recognized that they were not receiving comprehensive care, but rather a patchwork of services.

“I go and get a mammogram once a year and that’s lucky, because it goes by your income.” Erica, St. Louis

“You don’t take care of your health like a normal person would if they had full benefits, you know… So I haven’t had health insurance.  So you don’t do your well-womans.  Well, you do get a mammogram because some of the hospitals under this certain program get your [mammograms] done, but other than that, you get nothing.” Christina, St. Louis

After gaining coverage, participants in Little Rock and Columbus said they established relationships with providers that allowed them to obtain care and prescription drugs when needed. A number of participants said that after enrolling in coverage they saw a primary care provider and/or a specialist for care. They noted they now are able to access care when needed by making an appointment with their provider rather than waiting for a condition to become urgent or emergent and going to the emergency room or urgent care. In addition, participants indicated that they can now obtain necessary prescription drugs. Some participants in both Little Rock and Columbus reported difficulty finding a primary care provider and certain types of specialists, particularly behavioral health providers, who accepted their coverage and were seeing new patients, and noted that the plan provider directories were not always up to date.

Impacts of Gaining Coverage on Access to Care
Experiences While Uninsured Experiences After Gaining Coverage
I never went to the doctor until it got so bad I would have to be rushed to the emergency room. But, other than that, I just wouldn’t go because I couldn’t accumulate the bills.”
Celeste, Little Rock
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“I’m cutting my blood pressure pills in half. Then I go up to the grocery store and take my blood pressure to make sure I’m taking enough medicine. You do what you got to do.”
Trisha, St. Louis
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“I got sick with a real bad sinus infection and cough. I would have been on the phone with a doctor…[but]… there’s nothing available. So I missed two weeks of work….you’re broke already and then you miss two weeks work.”
Mary, St. Louis
 “Instead of just sitting there, going to the Dollar store and getting Tylenol or something or a home remedy, you can just get on the phone and make an appointment.”
Rashane, Little Rock
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“My diabetes medicine—before I wouldn’t use the needles as much and I wouldn’t take all of the medicine because it was too expensive …and now that it’s all covered, I have no problem.”
Gary, Columbus
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“I had a cold and it was hard for me to breathe. Because they were giving me antibiotics, I was like ‘wow I will get this taken care of in a few days,’ where prior to insurance I would have been nursing it for weeks at home.”
Melissa, Columbus
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After gaining coverage, participants in Little Rock and Columbus obtained care and treatment for existing health problems that led to improvements in their health and quality of life. Participants reported that gaining coverage has allowed them to treat ongoing physical problems, including conditions like asthma, diabetes, and high blood pressure and to address mental health needs, like depression and anxiety. They described how obtaining care not only improved their health, reduced their need for prescription drugs, and eliminated pain, but also improved their quality of life and ability to work and care for their family. For example, Chris-Joy in Little Rock had multiple emergency room visits for pain while uninsured. After obtaining coverage, she was diagnosed with Crohn’s disease and is now working with her doctor on a treatment plan. Luke in Little Rock suffers from severe anxiety and obsessive-compulsive disorder that previously interfered with his ability to work and sometimes led to suicidal thoughts. With coverage, he is now obtaining care and medications that have helped stabilize his life and allow him to “know what living should be like.” Similarly, Gary in Columbus noted that coverage has enabled him to get regular counseling for his depression which has facilitated his ability to look for a job.

“I had a procedure that’s gotten me off all medications. I no longer take depression medication, high blood pressure medication. Now I am back to work, I feel healthy, and I interact with my kids.” Ann, Columbus

“Until I had the Private Option, I basically struggled to manage my life, my job, school, with a disorder that really, really sucks. And, now that I’ve been able to go to therapy and get my treatments, it’s drastically improved my life. I can just be a normal person…” Luke, Little Rock

In addition, participants in Little Rock and Columbus reported obtaining primary and preventive care after gaining coverage. For example, Amy in Columbus described how after selecting a primary care physician, the doctor referred her out for a mammogram, pap smear, and colonoscopy since she had gone so long without seeing a doctor. In some cases, this preventive and primary care resulted in the diagnosis of serious conditions requiring immediate treatment. For example, Cindy in Little Rock was diagnosed with cervical cancer.

“You got to pick a primary physician, and of course since she’d never seen me and it had been so long without seeing a doctor, she sent me on a mission. She wanted me to get a mammogram, pap smear, colonoscopy.” Amy, Columbus

“So when I walked into that primary care physician’s office, I actually cried because it has been so long since I have been able to go.” Nanette, Little Rock

“I found out I had cervical cancer right after I got insurance,” Cindy, Little Rock

Many participants reported significant dental and vision needs, but some continued to face challenges to obtaining this care even after gaining coverage. In Ohio, Medicaid coverage includes adult dental and vision care, and participants in Columbus reported that these often were the first services they sought after obtaining coverage. However, a number noted challenges finding an available dental provider. In Little Rock, one managed care plan provided dental and vision services during the first year of the Private Option expansion, but stopped providing these services in the second year. As such, current enrollees in Arkansas do not have coverage for dental or vision care. Participants noted that this lack of dental and vision coverage in the Private Option was a key gap in coverage, with many reporting dental and vision needs.

Participants said obtaining coverage provided them a huge feeling of relief and sense of security and contributed to improvements in their overall well-being, ability to work, and relationships. Participants said being uninsured made them feel anxious and worried on a daily basis about what would happen if they became sick or had an accident. They were scared about the potential impacts on their finances as well as their ability to care for other family members. Some participants said they avoided participating in certain activities such as sports or helping friends move because they did not want to risk injuring themselves. Overall, participants said being uninsured led them to feel scared, depressed, and embarrassed. Participants that gained coverage in Little Rock and Columbus noted that having coverage has lifted the burden of worrying about the financial consequences of having an accident or suffering a major illness. Further, a number of participants said that gaining coverage has increased their self-confidence and reduced worries among other family members, who previously were concerned about their health. Moreover, by enabling them to address and manage their health problems, coverage has contributed to greater stability in their life and allowed them to focus more of their time and efforts on work and caring for their family. For example, several of the women in the groups noted that one of the benefits of having coverage is that it helps them stay healthy, which allows them to better care for their children.

Impacts of Gaining Coverage on Emotional Well-Being
Experiences While Uninsured Experiences After Gaining Coverage
“It’s scary. You live with fear all the time because if something major happens, then what do you do. I worry about it all the time.”
Kevin, St. Louis 
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“I almost hate to say it…but almost kind of embarrassment too, because…real men have jobs, they have insurance.”
David, Little Rock 
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“I think it just makes you nervous if something were to happen. You’d be in trouble if you needed something or you got in an accident…your financial life would be over.” Michael, Columbus
“To me, it’s like a security thing being able to go get pain management and get my back taken care of so I can be more active with my kids.”
Angela, Little Rock 
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“Before the Medicaid, I wouldn’t go to an interview or I would be afraid to apply, because when you are at an interview, you are going to want to smile, and I didn’t want to do that with a couple teeth missing. When Medicaid hooked up with my dentures, I felt a lot more confident to apply for work and go to that important interview.”
James, Columbus

Views on State Medicaid Expansion Decision

Participants in Little Rock and Columbus were grateful that they had access to coverage through the Medicaid expansion. In Little Rock, most participants were not aware that the Medicaid expansion was not available in some other states and, when learning this, were proud and grateful that their state expanded coverage. Many participants in Arkansas viewed their Private Option expansion coverage as separate from Medicaid, with some primarily identifying their coverage by their health plan name. A few participants had heard the recent state legislative debate about future funding for the program and were very concerned that their coverage might end. One participant said that if he lost his coverage, his experience would be worse than the first time he was uninsured because he now knows what it is like to have his health needs met. In Columbus, participants also were grateful that their state expanded and some felt that it was unfair that the availability of the expansion varied by state. While participants in both Little Rock and Columbus were appreciative to have coverage available to them, a number indicated that they hope that eventually they will no longer need to rely on the program because they will obtain better jobs, earn more income, and be able to purchase private coverage on their own.

“I’m proud that Arkansas did this and we were a nationwide leader in this.” Russell, Little Rock

Participants in St. Louis described feeling defeated, angry, powerless, and frustrated about being left without a coverage option. Some of the participants were aware that they were in a coverage gap as a result of their state’s decision not to expand Medicaid and said that the decision not to expand makes them feel as if their leaders do not care about them. Some of the African American men also felt the decision may be reflective of racial bias.All of the participants in the St. Louis groups said they would enroll in Medicaid if they were eligible.

“That’s what it communicates to me…that they’re not thinking about the health and welfare of the people they’re representing.” Kathy, St. Louis

Conclusion

In sum, these experiences illustrate the different experiences of low-income adults in states that have made varied Medicaid expansion decisions. Having coverage not only directly affected participants’ ability to obtain needed care to both manage and treat ongoing conditions and receive preventive and primary care, but also had broader impacts on their lives. While Arkansas and Ohio implemented the expansion in different ways, participants in both Little Rock and Columbus described how obtaining coverage improved their ability to access care, contributing to improvements in their ability to work and family relationships. In contrast, participants in St. Louis remained uninsured limiting their ability to obtain needed care, creating significant stress and anxiety in their lives, and interfering with their ability to work and care for their families.

The authors gratefully acknowledge Nancy Belden with Belden Russenello Strategists for conducting the focus groups upon which this report is based. They also extend their deep appreciation to all the focus group participants for sharing their experiences to inform this project. For more insight into one participant’s experiences see our Faces of Medicaid video at http://kff.org/medicaid/video/faces-of-medicaid/.

Executive Summary Appendix

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