I Have Mental Illness and I’m Terrified of Losing Medicaid

The system that's design to the protect the poorest and sickest is using people like me in a potentially life-threatening experiment.

by Liz Lazzara
Jan 25 2018, 1:00pm

Courtesy of Liz Lazzara

Being a Medicaid beneficiary is a gift that has arisen out of a series of curses. First, I had to be poor. Not just Bridesmaids-meme-poor, but the government’s definition of poor: making 133 percent of the Federal Poverty Level (FPL) or less. In 2017, that figure was $16,039.80 per year for individuals, or $1,336.65 per month. Fortunately—depending on your definition of the word—I qualify. I’ve already started my taxes and last year, I brought in $5,334—only 44 percent of the FPL.

That alone would qualify me for Medicaid, but I’m also sick. The state of Massachusetts has designated me as “medically frail” due to my mental illnesses—ADHD, generalized anxiety disorder with symptoms of agoraphobia, bipolar II disorder, and complex/cumulative post-traumatic stress disorder (C-PTSD). To be considered medically frail in Massachusetts ), you must qualify financially, be under the age of 65, and then meet one of five diagnostic criteria. For me, that means having a “serious mental illness,” a “chronic substance abuse disorder,” (I also have two substance use disorders) and a “serious and complex medical condition.” Yes, I meet three diagnostic criteria.

These factors combined allowed me to enroll in MassHealth Standard, for which I pay nothing aside from $21.90 per month for my six mental illness-related prescriptions. If I ever needed to be admitted to the hospital for a sudden injury or illness, I would pay $3 for the entirety of my stay. Otherwise, I can see my psychiatrist, therapist, primary care doctor, and dentist for free. If I needed it, I could even receive transportation to and from my appointments for free. As I said before, Medicaid is an enormous gift, but I can only receive it because I live in poverty and with chronic illness.

It came as an enormous shock, then, to see that, as of January 11th, individual states could require Medicaid beneficiaries to work in order to receive their benefits. I don’t work as a freelance writer by choice. If I could, I would also work a day job, as I used to before my condition worsened. A stable income means knowing that your bills will get paid and your fridge will have something in it. It means being able to replace worn-out clothes, the ability to take public transportation, and to afford a social life.

But my ever-fluctuating mental health doesn’t permit me to interact in the public sphere like healthy people can. I worry constantly about running out of energy, having a panic attack, jumping at sudden or loud noises, or experiencing a trauma trigger. I work at home to better my mental health, but my financial status requires it, as well. Without money for reliable transportation, it’s impossible for me to have any sort of “normal” job. Being forced to potentially aggravate my health on a daily basis in exchange for basic health insurance baffles me.

Even more frightening is the fact that the Center for Medicare and Medicaid Services (CMS) hasn’t implemented a blueprint for states that want to implement work requirements. In a letter to state Medicaid directors, CMS director Brian Neale lays out “guidance” for potential work requirement programs. He writes that programs should “be designed to promote better mental, physical, and emotional health” and to “help individuals and families rise out of poverty and attain independence,” but doesn’t require these programs to do anything more than meet and further “Medicaid program objectives.”

To be clear, if Massachusetts were to request CMS approval for work requirements, there are restrictions which could protect people like me. However, there is a disparity between CMS’s official letters and press releases and statements made by CMS administrator Seema Verma.

For example, CMS’s press release on January 11th states that disabled, elderly, and pregnant beneficiaries would be exempt from these requirements, leaving only “able-bodied, working-age adults.” Verma, on the other hand, tweeted that there are also “protections for the medically frail, and individuals with opioid addiction or other substance use disorders.” Which is correct? Are the medically frail and people with substance use disorders exempt from requirements or will they be made to work? Should Medicaid beneficiaries trust press releases they may not be aware of or public tweets?

I’ve also seen the opioid crisis mentioned in many places, including Neale’s letter, CMS’s press release, and Verma’s tweets, but the phrase “other substance use disorders” is alarming. Does my alcoholism and non-opioid addiction “count?” How would I go about proving them if I needed to? I called Charles Friedrich at a regional CMS office in Kentucky, hoping to resolve some of my questions, but have not received a response at the time of publication.

Again, I’m lucky. I never thought I’d be thanking Mitt Romney for anything, but I have to give him credit for “Romneycare,” otherwise known as the Massachusetts Healthcare Reform law, which provides me with Medicaid today. But I am not just a citizen of Massachusetts—I’m a citizen of the United States, and I’m dismayed by what’s going on in the state of Kentucky.

According to their recently approved proposal, if I lived in Kentucky, I would be required to spend 80 hours a month working, training for a job, going to school, being treated for a substance use disorder, or doing community service. Since I work a freelance writer and editor, I have no idea how I would prove my work hours to the state, or how I’d document my time working a 12-Step recovery program (i.e., general meetings, meetings with my sponsor, going on "commitments," and doing "Step work" at home).

Would either of those count toward 80 hours of work and substance use disorder treatment? Would the state recognize my mental illnesses as a reasonable restriction? There are no clear answers, but a recent Vox piece by Dylan Scott offers some unnerving insight: “CMS urged states to target any work requirements for nondisabled working adults; pregnant women, the disabled, and the medically frail are expected to be exempt. However, experts questioned how ironclad that guardrail is, given that parts of the guidance released Thursday appear to only suggest, not mandate, that those populations should be excluded from any work requirements.”

In the same piece, Sara Rosenbaum, a professor at George Washington University and expert on Medicaid policies, said, “There is a breathtaking lack of guardrails. Basically almost anything goes. There’s really nobody who’s exempt.” Based on these statements, I would most likely be subjected to Kentucky’s work requirements, regardless of my mental illnesses, substance abuse disorders, and medically frail status.

If I failed to meet Kentucky’s requirements, my eligibility for Medicaid would be suspended until the first day of the month after I fulfilled these requirements in a 30-day period, or after I took a health or financial literacy course (with no details about cost). Until then, my benefits would be terminated unless I went through a redetermination process or the state of Kentucky gave me a “good cause” exemption. Losing my benefits would mean losing access to the medications that keep me mentally stable, and out of inpatient psychiatric care.

Kentucky seems to believe that punishment is more effective than referrals to employment services, “as it provides for the consequence of eligibility suspension for non-compliance,” yet the proposal includes a brief promise to connect people with opportunities that would fulfill the state’s new requirements. Not exactly promising, especially considering that states are prohibited from using “federal Medicaid funds for supportive services to help people overcome barriers to work.” Where will the money come from? The proposal doesn’t address sources of funding.

These aren’t the only changes for Kentucky citizens. If I lived there, I would be required to pay a premium of $1 to 15 per month, which at first glance doesn’t seem like much. However, I would only be given $1,000 to pay my deductibles every year. Any health benefit that isn’t considered preventive is subject to a deductible.

And as I mentioned earlier, there’s a big emphasis on discipline. If I didn’t properly evaluate “cost and quality as [I sought] care,” thus going over my allotted $1,000, I would have nothing left to pay for uncovered services. When you live on $5,334 per year, such medical fees can be catastrophic. Furthermore, if I went 60 days or more without paying my premium, didn’t go through a proper redetermination process when required, or didn’t report a change in income within ten days, I would be punished by being disenrolled from Medicaid for six months. Without access to care for that length of time, I could end up homeless, hospitalized, or dead.

Not only is this a drastic change for Kentucky Medicaid beneficiaries, but the state has 180 days to submit an evaluation of its efficacy to CMS, marking the most vulnerable people in the state as guinea pigs in a potentially life-threatening experiment. A lawsuit—lodged on behalf of 15 Kentuckians at risk of losing their coverage—was filed just today to try and block this experiment.

Medicaid work requirements are not proven interventions. As Michael R. Strain, the American Enterprise Institute’s director of economic policy studies, wrote for Bloomberg, “An important goal of the state-level demonstration projects is to find out what works and what doesn’t. They should be carefully designed to gather evidence on these issues—and others, including the administrative burden placed on beneficiaries—so that the work-requirement system can be improved in the future.”

Medicaid was designed to protect the poorest and sickest people in the nation and it has done so for me far better than any traditional insurance plan. Is our nation really willing to gamble with the lives of American citizens in the hope of potentially saving federal dollars? As of January 11th, it seems the answer is yes.

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