Winston-Salem, North Carolina — Groceries or a doctor visit: It’s a decision Tasha Carroll has had to make all too often in three decades of navigating North Carolina’s mental health system.
Carroll, 39, has schizoaffective disorder and experiences symptoms of both mood disorder and schizophrenia. The Medicare insurance plan her condition entitles her to does not cover all — or sometimes any — of the services she needs, or it requires co-payments too costly for her to afford.
Carroll’s total income is about $1,200 dollars a month from Social Security disability and a court settlement 16 years ago after she was hit by a drunk driver. Her income puts her just above the $990 per month income limit for Medicaid eligibility in North Carolina, one of 19 states that have not expanded their Medicaid programs under the Affordable Care Act.
For more than two and a half million uninsured Americans, this has resulted in a nationwide “coverage gap.” In fact, a report from the National Alliance on Mental Illness shows that six in 10 Americans living with serious mental illness have no access to mental health care at all.
Those in Carroll’s situation fall somewhere in the miserable middle. They have incomes above Medicaid eligibility but below the lower limit of costs in the private insurance marketplace. Were Medicaid made available to these patients, their situations would ease considerably. Nearly two million uninsured people with a mental illness or substance abuse disorder live in states that have not yet expanded Medicaid under the Affordable Care Act.
A national expansion of Medicaid coverage was actually intended to be a provision of the Patient Protection and Affordable Care Act, but a June 2012 Supreme Court ruling made this aspect of the program optional for states. Nineteen states chose not to expand the program. Three of them — North Carolina, Missouri and Utah — have elections for governor in 2016, and a change in leadership could at least potentially mean a change in Medicaid policy.
Medicaid expansion could dramatically improve access to early treatment for people with a substance abuse disorder or mental illness. Many states cover a wide array of community health services in their Medicaid insurance plans, preventing last-resort emergency room visits. In Carroll’s case, her health care provider stopped taking her Medicare insurance, which at one point left her calling around to psychiatrists after a stint in the emergency room waiting area until she found one who would accept a new patient with her limited coverage.
Carroll’s experience was not uncommon. People living with mental illness make more than seven million emergency room visits each year, largely because they cannot find treatment elsewhere.
“Right now everybody is after money, it’s all about the money and who has it and who doesn’t,” Carroll told Truthout. “If you don’t have money, or you don’t have Medicaid, you’re screwed.”
Bethany Lilly, deputy director of policy and legal advocacy at the Bazelon Center for Mental Health Law in Washington, D.C., emphasized the importance of expanding benefits. “It can be challenging when you’re facing that situation because you’re paying out of your own pocket for copays,” she said, “and with a simple change, you wouldn’t be. It’s a change that any state would save money on.”
Dr. Marvin Swartz, a psychiatrist and mental health services researcher at Duke University’s School of Medicine, agreed. “The most important thing is to expand Medicaid,” he said. “It would reduce a huge amount of strain on everyone to cover the uninsured.”
A March 2016 US Department of Health and Human Services report supports their views. It shows that Medicaid expansion could dramatically improve treatment access for people with mental health and substance abuse disorders. If all states expanded Medicaid, the report said, more than 370,000 fewer people would experience symptoms of depression, and more than 500,000 would report being in good or excellent health.
Carroll is among the 55 million Medicare beneficiaries in the United States. Even though she is under the age of 65, she qualifies under a rule that allows people with certain disabilities, including severe mental illness, to obtain Medicare coverage. About 26 percent of Medicare beneficiaries — or more than 13 million Americans — live with some sort of mental or cognitive disorder.
These days, seeing a therapist is out of reach for Carroll, given her insurance plan’s $40 co-pay, in addition to deductibles. That’s an infeasible prospect, given that she also pays co-insurance costs of 20 percent for her hospital visits and her premiums — on top of rent, groceries and prescriptions. “And they think because I’m on Social Security disability, I’m living it up,” she said. “But I’m not.”
If Medicaid is expanded, Carroll and over 800,000 other North Carolinians would become eligible for the insurance program. In Utah, the number would be 190,000; in Missouri, 450,000 people would be insured if the state decided to expand Medicaid.
The federal government matches funds for Medicaid-covered services the state provides, so states that choose not to expand Medicaid forgo millions of dollars to match state costs for additional people. The rejection of Medicaid expansion in those three states has collectively left almost $63 billion in federal money forfeited.
North Carolina is one of three states — the other two are Alaska and Wyoming — that has decreased mental health funding for the past three years, according to the National Alliance on Mental Illness. Last year, the state cut over $100 million dollars from community mental health centers.
States that expand Medicaid could also see improvement in their mental and behavioral health programs without any new costs. State funds that currently support behavioral health treatment for people who are uninsured but would gain insurance under Medicaid expansion may become available for other mental and behavioral health investments.
The losses to the states that are refusing to expand Medicaid can be counted in more than missed funding. Lilly said that in addition to being the primary funder of mental health services in the United States, Medicaid is also the premier service provider of intensive mental health services, and it “covers far more services than Medicare.” Medicaid offers vital access to intensive, evidence-based community mental health services for people with serious mental illness, including peer support services, supported housing and employment, and mobile crisis teams.
Sita Diehl, the director of state policy and advocacy at the National Alliance on Mental Illness, pointed out that Medicaid expansion would also make it more likely for people to receive services earlier and at costs they can afford, as opposed to no treatment at all.
For many without Medicaid coverage, there are few alternatives. Robin Huffman, executive director of the North Carolina Psychiatric Association, said if people do not have access to a chair in the emergency room or a psychiatrist in a private or outpatient practice, then they are probably not going to seek out care. “The safety net for people with a mental illness in our world today,” she said, “is either the emergency room or jail.”
As an adolescent, Carroll lived with major depression and post-traumatic stress disorder (PTSD). She spent most of her teenage years in the now-closed Dorothea Dix state psychiatric hospital in Raleigh, North Carolina. At 18, she transitioned to outpatient services through a community mental health care provider.
But after her health care provider no longer accepted her Medicare insurance program, Carroll found a small outlet for care in her community. She has been attending mindfulness and coping strategy classes at the Greentree Peer Center in Winston-Salem, North Carolina, three days a week for four years.
Greentree is free for Carroll and others living with severe mental illness, and relies on donations and grants from the community. Peer specialists who also live with severe mental illnesses help run the center, and Carroll said she has made many friends at the facility.
“And one of them, or two of them or so, might have gone through what I’ve gone through,” she said, “and so you say, well this is how I did it, and I’ll learn from them — and pretty soon I’m not going to the hospital anymore.”
But not everyone has a resource like Greentree — uninsured people living with severe mental illness are more likely to wait long periods of time without treatment.
“If it’s going to cost you a lot of money to get care, you don’t get care,” Diehl said. “You’re in a tough-it-out position until you get to the breaking point and then you realize you couldn’t make it and then it costs you in terms of damage to your life.”
The results of this year’s elections could affect the health care of millions of Americans. In addition to the gubernatorial elections in three states this month, the presidential election could also affect the future of Medicaid access.
Hillary Clinton said she would try to persuade the remaining 19 states to accept the Medicaid expansion, but Donald Trump wants to reverse the expansion entirely and repeal the Affordable Care Act. Trump says he would create a system in which the federal government would allocate block grants to states to administer Medicaid because “the state governments know the people best and can manage the administration of Medicaid far better without federal overhead.”
A report from the Urban Institute shows that block grants would create disparities in Medicaid spending between states and “threaten current coverage levels and benefits that low-income people often need yet cannot afford.”
Carroll said she hopes that after this election season, Medicaid expansion becomes a reality nationwide. “I’m speaking for us all in saying we can’t get the treatment we need, or the doctors we need, because we’re having to choose between paying bills and going to the doctor,” she said. “And I don’t think that’s fair.”