Starting treatment with a mental health specialist often requires a wait of several weeks, but many psychiatrists and other specialists in Kansas City have waiting lists stretching over months.

While the need for mental health treatment has been growing in Missouri, many patient advocates say the state’s refusal to aggressively enforce mental health parity may be making the wait times even longer.

Marty Sexton, a 50-year-old disabled grandfather who lives in Peculiar, worked as a firefighter and then an army medic in Operations Desert Storm, Desert Shield and Enduring Freedom.

He says he’s still haunted by the suffering he witnessed as well as crippling feelings of guilt about not being able to help more people.

“I have nightmares, yes,” Sexton says. “Some that wake me and I can’t get back to sleep, and some that I have to medicate to find my way to go back to sleep.”

After he left the Army in 2001, Sexton struggled with depression, anxiety and PTSD, but he says medication and therapy helped.

“When I did get the care, and I’m able to get the care, it was great. I felt stronger,” Sexton says.

But Sexton’s treatment has often been inconsistent due to changes in his insurance coverage or doctors moving away.

And now, once again, he’s doing without a psychiatrist and having trouble finding doctors who can see him anytime soon.

Mental health parity law

Many health advocates thought they had a fix for the wait lists and other problems of a broken mental health care system in 2008, when President George W. Bush signed the Mental Health Parity and Addiction Equity Act. The legislation requires insurers to cover mental health care no differently than treatment for physical conditions.

But there was a hitch. The law was supposed to be enforced by the states, and many were slow to do so.

Most states eventually got on board, but Missouri remains one of the last ones where officials insist they don’t have the authority to uphold the federal law.

“It’s only Missouri and Oklahoma now that have said to the federal government that they will not enforce the federal parity act,” says David Lloyd, policy director for the Kennedy Forum, a nonprofit organization that tracks mental health parity. “So every other state and D.C. are working to enforce the federal parity act and Missouri is really, unfortunately, an anomaly.”

During the 11 years since the federal law was enacted, there has been a surge in suicides and substance abuse cases in Missouri as well as increased rates of depression among young people.

But experts estimate that more than half the people in Missouri with mental illnesses don’t get psychiatric treatment in large part because they can’t access it.

“It is absolutely heartbreaking when that person finally is ready to get the help they need, and the help isn’t there for them,” says Gena Terlizzi, executive director of the National Alliance on Mental Illness Missouri.

Lingering inequities

Psychiatrists and other mental health specialists say that much of the problem is rooted in lingering inequities in how they are treated compared to other providers.

“One issue is the actual reimbursement for services. So is that rate of reimbursement consistent with being able to keep your lights on at your office?” asks Bob Batterson, section chief of child psychiatry at Children’s Mercy Hospital in Kansas City.

Medicaid rates are considered too low by most doctors, and in recent years the number of psychiatrists taking new Medicaid patients has dropped to around 1 in 3 nationally.

But private insurance is problematic, too.

In most areas of medicine, private insurance typically pays more than Medicare, but in psychiatry that’s often not the case. In Missouri, private insurance pays less than 80% of Medicare rates, among the lowest comparative rates in the United States.

Researchers have found that in areas where mental health parity is enforced, provider wages tend to be higher and access to mental health services improves.

To be sure, most psychiatrists aren’t starving. Missouri psychiatrists’ salaries average $212,000 a year – but that’s still among the lowest salaries for psychiatrists in the country.

Batterson says the low payments, plus the mounds of paperwork required by Medicaid, make Missouri a less-than-appealing place to work.

“When the requirements to manage that plan become onerous, you will find very few people taking that insurance because they just don’t have the time, staff and capability to do it,” Batterson says.

But even as waiting lists grow, there are still places where patients can see doctors relatively quickly.

Community mental health centers like Healing Canvas in Kansas City, Missouri, which is part of Truman Medical Centers Behavioral Health, still take Medicaid and provide free care in some cases.

In fact, Missouri is considered a national leader in supporting these publically funded mental health centers, which originated in the Community Mental Health Act of 1963.

But these centers haven’t been able to fill the yawning gaps. Missouri has the highest percentage of mental-health-provider shortage areas of any state in the country. About 60% of Missouri counties have no practicing psychiatrists.

Long wait lists

Tricia Wear, a 45-year-old mother of two children, says she went without treatment for her borderline personality disorder, depression and anxiety while living in Lafayette County, Missouri.

She’s now in the middle of a three-and-a-half month wait to see a doctor.

“If you’re already struggling with feelings of self-worth, and then having your mental health provider say, well, we’ll get to you eventually – that’s really hard,” Wear says.

Wear relies on coping strategies and the support of friends, but at times she says she feels like she’s clinging to the edge.

“At what point am I sick enough to get help now when I need it?” she asks. “My thoughts start ranging to some pretty dark places.”

Missouri has taken some steps to improve parity, and it recently reached an agreement with the federal government to enforce equal mental health care access for Medicaid patients. But advocates have been pushing for additional steps, including state-run audits of private insurance plans.

A spokesperson for Missouri’s Department of Insurance insists mental health parity is being enforced through state laws. But Gina Terlizzi says the unequal pay scales and estimated 238,000 people in Missouri with mental health needs demonstrate the state isn't doing enough.

“In those cases, individuals often have to go without their treatment,” Terlizzi says. “When, if you look at similarly effective treatments for a physical health condition, we just don’t see that.”

After years of struggling to get treatment, Sexton, the veteran, became an advocate for people with mental illness in Missouri.

He’s been speaking out about mental health parity and helping others in support groups.

But he says it can be especially hard to do that when you’re stuck on a waiting list and counting the days until you can see a doctor.

“You’ve got so much stigma, that you’re afraid to speak out,” Sexton says. “So basically you sit in the closet. You sit in the corner. You lay under your covers and you just cry.”

Alex Smith is a health reporter for KCUR. You can reach him by email at alexs@kcur.org

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