Hear Their Voices: The Experiences of Midlife Adults Who Gained Medicaid Coverage in Four Expansion States

The Affordable Care Act has increased access to health insurance coverage in part by creating a state option to expand Medicaid. To learn more about people’s experiences before and after gaining access to health insurance through state Medicaid coverage, the AARP Public Policy Institute commissioned a series of focus groups of midlife adults (ages 45-64) who were previously uninsured, had no dependent children and had gained coverage through Medicaid in four expansion states (Kentucky, New Mexico, Ohio, or Pennsylvania). The majority (56 percent) of the study participants were working. Those who were not had disabling health conditions that prevented them from working, or they were full-time family caregivers. This report, Hear Their Voices: The Experiences of Midlife Adults Who Gained Medicaid Coverage in Four Expansion States, lifts up and amplifies the voices of these 32 diverse midlife adults who graciously shared their stories. (Methodology and participant characteristics are included in appendices.)

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The report is organized into 10 sections that include topical background and feature relevant quotes from the focus group participants:

• Uninsured Midlife Adults Experience a Range of Potentially Harmful Emotions
• Medicaid Provides a Sense of Security for Newly Insured Midlife Adults
• Many Uninsured Midlife Adults Postpone Needed Medical Care
• Medicaid Is a Lifeline for Low-Income Midlife Adults
• Medicaid Helps Midlife Adults Afford Needed Prescription Drugs
• Medicaid Provides Access to Potentially Lifesaving Preventive Services
• Medicaid Provides Critical Support for Midlife Family Caregivers
• Medicaid Helps Some Midlife Adults Get Back into the Workforce
• Recent Changes in Medicaid Policy are Worrisome to Midlife Adults
• Midlife Adults Had Messages for Policy makers

Five of the sections are highlighted below.

Uninsured Midlife Adults Experience a Range of Potentially Harmful Emotions

Uninsured adults experience significantly more stress than those with health insurance coverage. Emotions like long-term stress, depression, and shame can have detrimental effects on health. Before gaining Medicaid coverage, many midlife adults in the study experienced negative emotions related to being uninsured.

• Without health insurance, you feel stressed. The little things are fine, but if something big happens, like a heart attack, you’re screwed. —Eric, 46, New Mexico

•  I mean, I was really worried about not getting the mammograms done, because cancer runs in our family. It was messing with my mind. I’m like, oh God, if something happens. I can’t even go to the hospital. I think it was depressing me. —Cindy, 63, Pennsylvania

• I think a lot of it the shame comes from, you know, we’re in the greatest economy ever [in 2019], but I can’t find a job that can give me health insurance. —Peter, 53, Kentucky

Many Uninsured Midlife Adults Postpone Needed Medical Care

Uninsured people are more likely to go without needed health care than their insured counterparts. In 2018, one in five uninsured adults went without needed medical care due to cost even as delaying it can exacerbate underlying health conditions, worsen health outcomes, and negatively affect one’s sense of wellbeing. 

• I went without health insurance from age 30 to about age 52. —Jennifer, 57, Kentucky

• For about nine years [before I got Medicaid], I had no coverage. For maybe a year, in there, I had coverage through an employer, but I couldn’t afford to use it, because I got a low wage and you’ve got a high deductible and co-insurance so you just don’t use it. —Matthew, 58, New Mexico

• My manager called me into the office. He’s like, how do you come to work with a bad hip, and I can’t get guys to come in with a nose bleed or paper cuts? I said I’m old school, I just do it. You know, I just try to block the pain out. —Vincent, 54, Ohio

Medicaid Provides Critical Support for Midlife Family Caregivers

Family caregivers play a vital role in this country’s long-term care system, providing $470 billion in unpaid care every year, performing hands-on medical or nursing tasks, arranging doctor appointments and managing provider payments. For the midlife adults in this study who were family caregivers, Medicaid covered the care they needed to stay healthy to support their aging loved ones.

• I mean, Medicaid pretty much saved my life so I am able to help my mom, who has macular degeneration. She’s just starting to deal with not being able to drive or do her shopping. —Tracey, 45, Ohio

• I'm my 91-year-old mom’s primary caregiver. I spend two-thirds of every day with her. Yeah, I think [Medicaid helps me to be a caregiver] because I can use that to maintain my own health, to take care of her. Yeah, that would be totally different if I didn’t have any insurance. —Chris, 51, Kentucky

Medicaid Helps Some Midlife Adults Get Back into the Workforce

People who report having excellent or very good health are more likely to be working than those reporting fair or poor health. In 2017, 11 percent of adults on Medicaid were unable to work because of an illness or disability. Several study participants who were unable to work because of heath credited Medicaid with helping them get back on their feet and back to work.

• Medicaid paid for surgery and now I’m able to work. I will make enough money that I probably won’t need Medicaid anymore. But Medicaid got me through a bad time in my life. Absolutely, yes, Medicaid got me back to work. —Bruce, 56, Pennsylvania

• I ended up with an aneurysm, you know. So that was a true blessing and a relief when they did put me on Medicaid. Then I got off [Medicaid] and I was able to go back to work. —Tonya, 56, Ohio

Recent Changes in Medicaid Policy are Worrisome to Midlife Adults

In recent years, some states have sought federal approval to implement a broad range of new Medicaid policies, many of which could create significant barriers for enrollees or result in coverage losses.  Examples of these emerging waiver policies include conditioning eligibility for Medicaid on compliance with work requirements and requiring increased cost sharing. Many midlife adults were apprehensive about these new policies, but a few expressed support for some of them under certain conditions.

• There’s [a need for Medicaid] because there are some places that don’t want to hire older people. —Cindy, 63, Pennsylvania

• As long as you can be exempt for certain reasons, as long as they’re not trying to make people work that are not able. —Lauren, 52, Kentucky

• I think cost-sharing requirements are totally fair, if it is with a sliding income scale. Like if I’m making 20 grand a year and somebody else is only able to make 12 grand a year, I would hope that their fees are lower. —Craig, 49, Ohio

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Conclusion

The study findings demonstrate a pent-up demand for lifesaving services and treatments, as well as preventive services. As the nation continues to battle the coronavirus pandemic, access to care is even more important for adults of any age, including midlife adults, who may have untreated health conditions—like type 2 diabetes, chronic kidney disease, or obesity—that increase their risk for serious illness and death from the virus. Medicaid expansions—where the federal government pays 90 percent of the costs—are a cost-effective way for states to improve and maintain the health of their populations during the current pandemic and after its eventual end.

Medicaid coverage is shown to make a lifesaving difference in the lives of low-income, midlife adults in the four study states, but can also make them feel ashamed and stigmatized when they perceive that policymakers view the program and those who use it with disdain. The report concludes with a set of policy recommendations:

1.       States that have not enacted Medicaid expansions should do so as soon as possible.

2.       States should not seek or enforce waiver policies that present barriers to new coverage or continued coverage for midlife adults.

3.       States that do implement work requirements after the public health emergency is over should clearly exempt family caregivers to assure that they do not lose Medicaid coverage.

4.       States should reject the federal government’s offer to seek section 1115 waivers to cap federal Medicaid funding.

All levels of government and the provider community should conduct robust campaigns to promote enrollment in Medicaid expansions.