Coloradans on Medicaid face greatest obstacles to accessing mental health care, survey says

They were directed to a variety of physicians from neurologists to psychiatrists, some based in Denver, some near their home, some in neighboring counties, some in other states, using telemedicine.

It was only the first in what became a series of exasperating experiences with public programs that were sometimes helpful, but reliably challenging to navigate, all as her daughter’s mental health spiraled out of control, culminating with a suicide attempt, followed by hospital trips, in-patient and out-patient care, coverage denials, erroneous bills and special arrangements to see local doctors.

While Lovelace can’t compare her experience with Medicaid to the experience she might have had with private insurance, she suspected that her daughter’s mental health care access has been stymied by the way the state’s public health care system works.

New data show that Lovelace’s belief is at least shared by others on Colorado’s Medicaid program, run by the Colorado Department of Health Care Policy & Financing (HCPF).

In a massive survey of Coloradans about access to health care, the state’s Medicaid patients reported mental health and substance abuse problems two to three times as frequently as those with employer-provided insurance, individually purchased insurance or Medicare.

And when it comes to getting help for mental health and substance abuse problems, Medicaid patients reported worse access to treatment.

The Colorado Health Access Survey, conducted every two years by the Colorado Health Institute, surveyed more than 10,000 Coloradans on 95 health care access variables.

When respondents were asked whether they had eight or more “poor mental health days” in the preceding 30, a quarter of Medicaid patients answered yes. But for Coloradans with employer-sponsored insurance, individually-purchased insurance or Medicare, that figure is closer to 1 out of 10.

Asked whether they or people close to them dealt with substance abuse, Medicaid patients responded yes more than twice as often: 37% for alcoholism and 21% for prescription drugs addiction, compared to 20% and 10% for Coloradans with employer-sponsored insurance, individually purchased insurance or Medicare.

Marc Williams, a spokesman for the state’s Medicaid program, said the agency is aware that Medicaid patients have greater needs.

“Having lower income and the stresses that come with it certainly add to the pressures our members face,” he wrote in an email. “However, Medicaid actually has a more robust behavioral health benefit than any other insurer.”

But the CHAS survey also reveals Medicaid patients on the whole have extra barriers to access, which experts say is a byproduct of the design of the systems.

More than 1 out of 6 Medicaid patients reported needing mental health care but not getting it. For Coloradans with employer-sponsored insurance, individually purchased insurance or Medicare, that figure was less than 1 in 9. And when it comes to needing but not being able to get substance abuse help, Medicaid patients reported needing substance abuse treatment but not being able to get it four times more often than those insured through their employer, private insurance or Medicare.

And for Medicaid patients who said they needed mental health care but didn’t get it, they reported twice as often as those with employer sponsored or privately purchased insurance that they were treated unfairly when getting medical care or that they skipped care because of being concerned about being treated unfairly.

Jeff Bontrager, Colorado Health Institute’s director of research and evaluation, said Medicaid patients likely have greater mental health needs because they face a number of other challenges in their life, leading to greater stress.

“One thing that cannot be overlooked is the correlation with poverty,” Bontrager said. “By virtue of the fact that most people who qualify for Medicaid qualify based on their income, they usually have a low income or technically are under the poverty line. And people who are in poverty face a lot of challenges.”

Vincent Atchity, president and CEO of Mental Health Colorado, a nonprofit mental health advocacy organization, said the same thing. For people with low incomes or who live in poverty, everyday circumstances can be compounded with extra stress, whether that’s because of irregular work schedules, uncertain transportation, keeping up with bills or having to worry about all those things, plus sometimes caring for a family.

“For folks on Medicaid, things are not swinging along nicely. They’re living a hard life,” Atchity said, pointing out that researchers know low-income Americans suffer more from physical illnesses, in addition to a growing awareness of the same correlation with mental health. “They’ve got a shorter life expectancy. They suffer more from obesity and Type 2 diabetes and cardiovascular diseases. So it’s not terribly surprising that they’re reporting more mental health needs. The term of art that folks in the world of health use is the ‘social determinants of health.’”

Bontrager and Atchity stressed that for people who have the resources to meet their basic needs, addressing a mental health care need is manageable, whereas for people with low incomes, those needs frequently only get addressed after they’ve gone unmanaged and reach a crisis level.

Plus, they said, a feedback loop can occur, where mental health problems can lead to outcomes, like losing a job, which further exacerbates their ability to meet their basic needs, which in turn exacerbates their mental health problems.

“Things can spiral quickly for these folks,” Atchity said.

The various physicians Lovelace’s daughter was sent to ruled out some diseases, but Lovelace’s daughter got inconsistent and sometimes conflicting diagnoses.

“She has had every acronym applied to her,” Lovelace said. “ADD, ODD, ASD, DDMD, SPD.” (Attention Deficit Disorder, Oppositional Defiant Disorder, Autism Spectrum Disorder, Disruptive Mood Dysregulation Disorder, Sensory Processing Disorder).

Some doctors wanted to medicate Lovelace’s daughter with stimulants. Another wanted to use a psychiatric drug, which Lovelace tried until her daughter began having a heart murmur.

At 6, after years of trying to get mental health treatment, in the summer of 2018, Lovelace’s daughter talked about — and then attempted — suicide. Lovelace immediately took her daughter to the hospital, where physicians put her on a medical hold, then transported her by ambulance to Denver for inpatient mental health treatment at Children’s Hospital.

Lovelace’s daughter spent the next several weeks between inpatient treatment and outpatient day treatment in Denver.

When her daughter was released, Lovelace needed to find a local therapist to see her daughter weekly, in addition to coming back to Denver to see a child psychiatrist monthly. Getting approval for a local therapist took months and Lovelace had to overcome multiple denials by the state’s Medicaid program.

Those hurdles stemmed from a lack of child therapists who work with Medicaid in the area and a lack of access for regular appointments at the local community behavioral health center. A local child therapist wanted to help. But that therapist’s letters to the state’s Medicaid office, seeking approval for a “single-case agreement” that would allow the child to access programs, kept resulting in denials by the state’s Medicaid program.

“So you have a 7-year-old who made an attempt on her own life, and seeing a therapist wasn’t deemed medically necessary by HCPF (the state Medicaid agency),” Lovelace said. “If that’s not medically necessary, I don’t know what is.”

It took three rounds of letters arguing for the care, followed by review by the state Medicaid office, before the single-case agreement was permitted. Then, the local therapist needed to go through extra training through the state and then through the local Medicaid assistance agency, called a Regional Accountability Entity (RAE).

The single-case approval process put administrative procedures before her daughter’s needs, Lovelace said.

Atchity said the barriers to access, especially for patients navigating the state’s Medicaid program, result from designing the medical system around administrative needs, instead of being centered on the patient.

“Our payments systems, our reimbursement systems, especially for our community health centers, are so complicated,” he said. “These systems have been set up to serve programmatic, bureaucratic ends.”

Williams, the Medicaid spokesman, highlighted the “drop-in services” geared to people with serious mental illness, housing and employment programs for people with behavioral health, and prevention and intervention services not covered under commercial plans.

“The percentage of Medicaid members accessing behavioral health services has remained very steady over the past five-plus years — we hover right around 15% of our 1.2 million members. With regard to access, we’re equally susceptible to provider shortages as other plans. Like other plans, we certainly need additional behavioral health providers.”

After finally getting the single-case agreement set up with with her local therapist, Lovelace and her daughter saw her stabilize. Plus, she was back in school, which Lovelace feels gave her some extra stability because of the predictability and routine. But this summer, she had another episode. Lovelace said her daughter had learned better coping skills from her therapist, but that her daughter again told her she was having thoughts about hurting herself and suicide, and that she wanted to go to the hospital.

Lovelace took her to their local hospital and they tried to get her daughter back to Children’s Hospital in Denver, but there weren’t any beds available. So they instead took her to Cedar Springs Hospital in Colorado Springs.

“I protested. Her doctors weren’t there,” Lovelace said. “But they took her there anyway.”

Lovelace described a far worse experience than being at Children’s Hospital in Denver.

Lovelace said because her daughter was admitted late on a Friday, it took until Monday before her daughter got substantive care, on top of other complaints about the cleanliness and a crowded bed situation for her daughter.

“She came out traumatized by that experience,” Lovelace said of the stay at Cedar Springs.

A spokesperson for Ceder Springs Hospital said they are prohibited by privacy from commenting on a specific patient’s experience, but said they’re committed to providing providing high-quality mental health treatment in a “safe, therapeutic environment,” emphasizing “compassion and respect for all patients and families,” and that patients are invited to contact their billing office directly whenever they have questions.

After her daughter was released, Lovelace got her back into the outpatient day treatment program in Denver, where she spent about a week.

“The intensive day treatment is really great for her,” Lovelace said. “She’s working on those skill sets, learning coping mechanisms, what to do with her feelings. You see a lot of improvement.”

Lovelace’s daughter stabilized again after the episode, but then bills showed up for the stay at Cedar Springs, Lovelace said, which should have been billed to Medicaid. So she called her local RAE, and they told her the billing had been mishandled and that Medicaid would cover it. Together, they worked through a successful appeal.

“But what if I didn’t know to call my RAE?” Lovelace said. “What if I didn’t know who to call?”

Lovelace said her daughter is much better today because of the help of several people, from her RAE, to her local therapist and the physicians she sees monthly in Denver.

“She has her ups and downs,” Lovelace said. “It’s going to be a long-term process.”

And Lovelace said she’s hopeful.

“I hope we never have to go back to the hospital like that. I don’t ever want her to ride in an ambulance or be in-patient again.”

Lovelace hopes, more than anything else, her daughter will get to grow up and live a normal, fulfilling life.