Why is it so hard to find therapists who take insurance in Illinois?

Meena Thiruvengadam faced a choice when her therapist stopped taking health insurance about a year ago.

She could try to find someone else who would take her insurance, or she could pay her therapist — whom she trusted and had already been seeing for years — out-of-pocket, without using insurance.

Thiruvengadam decided to pay her out-of-pocket, about $125 a session.

The tradeoff is that Thiruvengadam, who is a freelance journalist, can no longer afford weekly therapy for her depression and anxiety. Now, she sees her therapist about once a month, far less often than she’d like.

“I can start all over and relive some things I maybe don’t want to relive, or I can suck it up and pay for it,” said Thiruvengadam, of Logan Square. “This is something I shouldn’t have to pay for, but it is worth it for me to pay for this.”

Thiruvengadam’s experience is an increasingly common one in Illinois and across the country. Many mental health professionals no longer take health insurance because they say they’ve grown frustrated with insurance companies not paying them enough, taking too long to pay and making them jump through hoops to give patients the care they need.

Illinois’ largest insurance companies say they’ve worked to expand the number of mental health professionals who contract with them and keep their rates competitive. But fed-up therapists know that even without taking insurance, they can still attract patients because demand for therapy is outpacing supply. Under stress from the pandemic, the number of people seeking therapy has exploded, yet there’s a long-standing shortage of mental health workers.

The percentage of adults in the U.S. reporting symptoms of anxiety or depressive disorder shot up from about 11% before the pandemic to more than 30% in June, according to the Kaiser Family Foundation. Yet in 2018, Illinois had about 14 behavioral health care professionals per 10,000 residents — far lower than the national average of 21, according to a report from the University of Southern California Leonard D. Schaeffer Center for Health Policy & Economics.

The result is a tiered system, in which not everyone has equal access to mental health care. Those who can afford to pay, do. Those who can’t afford it often make call after call, struggling to find someone who takes their insurance and doesn’t have a long wait list.

The most vulnerable members of society — people on Medicaid or without insurance — rely on community mental health centers, community organizations and federally qualified health centers for help, where they may have to wait for therapy, receive less frequent therapy or, in some cases, see less experienced therapists.

In Illinois, 39% of people who needed mental health care but did not get it in 2018-2019 blamed cost for their lack of care, according to the Kaiser Family Foundation.

“Essentially, care is rationed based on ability to pay, so your ability to get services is based on your finances,” said David Lloyd, a senior policy adviser with the Kennedy Forum. Many people in the middle class can’t afford to pay out-of-pocket for regular therapy sessions, which can sometimes run as much as $200 to $300 each, he said.

“People without means really have their access restricted.”

Reimbursement rates are a sticking point

When one Northbrook mother needed therapy for her 13-year-old son last summer, she called about half a dozen therapists, searching for one who would take her insurance. Everyone she called either had a monthslong waitlist or wouldn’t accept her insurance, which is UnitedHealthcare, the second largest health insurer in Illinois.

“I basically gave up on the whole idea of insurance,” said the woman, who asked not to be named to protect the privacy of her son, who has a phobia of needles so severe that he’s lost sleep and weight leading up to vaccinations.

She finally found a therapist who could see her son but wouldn’t take her insurance. At $165 a session, her family has now spent nearly $5,000 on the therapy.

“Insurance costs a lot of money these days, so it should have been covered,” she said. “We are fortunate we can afford to do it ... but I’m sure most people just can’t.”

In Illinois, many patients make a similar choice. Nearly 14% of behavioral health office visits by patients with PPO insurance plans were to out-of-network providers in 2017 in Illinois, according to a 2019 report from consulting and actuarial firm Milliman commissioned by the Mental Health Treatment and Research Institute.

Many psychiatrists and therapists have stopped taking insurance — or only take one type of insurance — because they say the rates at which many insurance companies pay them are too low. The percentage of psychiatrists who worked in practices where patients mostly paid for visits themselves, without using insurance, rose from 16% in 2007-2009 to 26% in 2014-2016, according to an article published in JAMA Psychiatry. Among psychologists, 21% said most of their patients paid out-of-pocket, according to the 2015 American Psychological Association Survey of Psychology Health Service Providers.

Illinois therapists say that Blue Cross reimburses the best of the insurance companies in the state, and patients with Blue Cross will likely have an easier time finding a therapist who takes their insurance than other patients.

“It’s not financially savvy (for providers to contract) with a lot of the commercial payers,” said Jessica Boland, director of behavioral health at Esperanza Health Centers, who also works as a private practice therapist on the side. “The reimbursement rates vary pretty drastically.”

Reimbursements have to cover not only the actual time spent in therapy, but also the costs of doing business, such as rent and time spent on documentation and billing.

In some cases, therapists can make twice as much by billing patients directly, without taking insurance.

“It’s truly the Wild West because insurance companies make the rules, make the changes, and don’t really think about the ramifications,” said Jennifer Froemel, who owns private practice Innovative Counseling Partners and serves on an Illinois Counseling Association task force that examines insurance trends in mental health.

Therapists say they should be paid more in line with what insurers pay for comparable medical services.

Federal and state parity laws require insurance companies to cover behavioral health and physical health care equitably. But in 2017, primary care doctors were paid about 24% more than behavioral health providers for similar services during office visits, by PPO insurance plans, according to the Milliman report.

“It just again kind of underscores that stigma that mental health is not as valued,” Boland said.

Illinois insurers defend their rates and networks. Illinois’ largest insurer, Blue Cross and Blue Shield of Illinois, said in a statement that it has 20,000 psychiatrists, licensed psychologists, therapists and other behavioral health specialists in its broadest PPO network “because our rates for covered services remain competitive and reasonable, we pay promptly, maintain accurate records, and communicate openly.”

UnitedHealthcare said in a statement it has “continued to review and modify fee schedules to ensure they are in line with the market” and has increased the size of its Illinois network of behavioral health providers by 42% since 2020.

Aetna, a CVS Health company, said in a statement its members are increasingly getting mental health help via telemedicine, and that it is working to expand its mental health networks to include peer support specialists, licensed clinical social workers and coaches to give members a wider variety of services.

Therapists fear denials, audits, clawbacks

Many therapists and psychiatrists say they also shun health insurance because of the frustrations of dealing with insurance companies.

Matthew Jones, a former Chicago therapist, was rocking his 3-month-old daughter to sleep in April, when he took to Twitter. He wrote a screed that started with the declaration, “Insurance companies hate therapists.”

He detailed why he had recently decided to stop taking insurance, describing low and delayed payments and hours spent on the phone with insurance companies when claims for care were denied.

His tweets drew thousands of reactions, ranging from therapists who agreed with him to patients who lamented that they can’t afford therapy because of decisions like his.

“I was very surprised,” he said of the passion of some of the responses. But Jones, who is now a licensed psychologist in Denver, doesn’t regret posting the thread.

“I think there’s a tendency among the public at large to blame therapists as these gatekeepers who are withholding care because they’re selfish and they’re making so much more than the clients they’re servicing ... and that’s what I wanted to push back on,” Jones said.

Therapists who take insurance describe being told by some insurance companies to shorten their sessions from 60 minutes to 45 minutes. They also worry about being audited.

In some cases, they say they’ve had to justify to insurance companies why a patient needed continued treatment. In other cases, they describe being subjected to “clawbacks” which is when an insurer demands money back, if the company says it overpaid the therapist.

John Simley, a spokesman for Blue Cross and Blue Shield of Illinois, said the insurance company has a responsibility to the employers and members who use its plans to “reconcile overpayments.”

But many therapists find the prospect, along with other insurance company practices, threatening.

“It’s not like it’s just annoying for the therapist ... to fill out extra forms, it’s actually harmful to the treatment,” said Linda Michaels, a Chicago psychologist who cofounded the Psychotherapy Action Network to advocate for quality therapy. “It can become very problematic to try to provide care for somebody and also have to battle with a multibillion dollar corporation just to allow you to do a therapy session.”

Like many therapists in Illinois, Michaels takes Blue Cross but not other types of insurance, and she has mixed feelings about it. By taking insurance, she feels that she’s indirectly supporting policies with which she disagrees, but she takes Blue Cross so she can help patients beyond just those who can afford to pay out-of-pocket.

Chicago therapist Francesca Giordano has never taken insurance. Giordano, who practices on Michigan Avenue, knows that means her clients are limited to those who can afford to pay her $180 an hour fee.

But she said insurance reimbursement rates don’t recognize her education or decades of experience. She’s a licensed clinical professional counselor, has a doctorate in counselor education and supervision, and was an academic training other counselors for 30 years.

“It is unduly complicated. It is arbitrary. It is low paying,” Giordano said of insurance. At least with clients paying out-of-pocket, she knows she has a steady stream of income that won’t be interrupted by insurance issues, she said.

“There’s no doubt that clients that I would choose to see, I don’t see because they can’t afford me because I won’t deal with insurance,” Giordano said.

‘We can’t keep up.’

Patients who don’t have insurance, or who have Medicaid — which is state and federally funded health insurance for people with low incomes — may be even worse off.

In Illinois, Medicaid pays therapists and other providers less than many private insurers, meaning many therapists won’t accept it.

DK Therapy in downtown Chicago takes many types of private insurance, but owner Danielle Kepler said it’s unlikely her practice, which has 12 clinicians, will take Medicaid any time soon.

“I don’t think I would accept Medicaid in my practice because of the issues getting reimbursed,” said Kepler, who is a licensed clinical professional counselor. “It takes three months or maybe longer to get paid on Medicaid. That’s just not sustainable for me, in terms of my business.”

Many providers have criticized slow payments from Medicaid in recent years. But Jamie Munks, a spokeswoman for the Illinois Department of Healthcare and Family Services, which oversees Medicaid, said in an email “complaints about billing delays were far greater in 2018 and 2019 than they are today.” Weekly meetings between Medicaid managed care organizations and providers, as well as a portal where providers can submit complaints have helped, she said.

People with Medicaid or with no insurance must often turn to federally qualified health centers and community mental health centers, which accept Medicaid or charge patients on a sliding scale, based on what they can afford.

But faced with high demand and low payments, those centers often have wait lists or see patients less frequently than patients might prefer. Like other therapy providers, they’re seeing skyrocketing demand but can have an especially difficult time recruiting therapists because of tight budgets.

In December and January, there were more than 5,800 vacant clinical and support positions and more than 9,300 patients on waiting lists for mental health and substance use services at Illinois community behavioral health centers, said Blanca Campos, CEO of the Community Behavioral Healthcare Association of Illinois. At that time, at least 40% of the centers had stopped seeing new patients.

Nourishing Hope, a Chicago community-based organization that provides social services, had a waiting list of about 20 people in July, that it didn’t expect to start tapping into until the fall when therapy interns would arrive to help, said Jennie Hull, chief program officer. Many community based organizations and community behavioral health centers rely on therapists who have not yet been fully licensed, who work under the supervision of licensed clinicians.

Esperanza Health Centers, a federally qualified health center with locations on the Southwest Side of the city, now has about a three-week-long wait for new therapy patients despite having added about 10 behavioral health providers since 2020, Boland said.

“I’ve never seen demand like this,” Boland said. “We can’t keep up.”

The centers try to take those with severe problems sooner, but it’s not a perfect science.

When Marine Staff Sgt. Salvador Torres needed help about a year ago, he called Esperanza, and a handful of other providers, to try to set up therapy. Torres had just separated from the mother of his children, and was despondent. He had no energy and no desire to talk to people. He would show up to his work as a Marine recruiter and stare blankly at his computer screen.

Each time he called a provider, they would ask him if he was suicidal. He always replied “no.” In retrospect, he’s not sure that was true. Now, he thinks he might have been suicidal but didn’t want to admit it at the time.

“I just want some help,” he would tell those who answered the phones. “I need someone to talk to, some medication. I don’t know how much longer I can take it.”

Torres, of the West Lawn neighborhood, was told he’d likely have to wait at least a month. He didn’t feel that he could wait that long.

One day, his boss asked if he was OK. He said he was not. His boss immediately picked him up, and drove him to the emergency department at the Captain James A. Lovell Federal Health Care Center, where he was assessed and prescribed medication. He went to outpatient therapy every day at Lovell for the next three weeks before he started therapy at Esperanza.

Torres has been in therapy at Esperanza ever since, and though he’s had ups and downs, he said he’s doing much better.

“It’s a thin line when it comes to prioritizing who they see and who they don’t,” Torres said of the wait lists. “If it’s a mental crisis, you don’t know what that person is capable of doing, if they really feel that bad. It should be more readily available.”

The fix?

Illinois leaders have been working to try to make it easier for patients to find therapists, and a number of businesses have also sprung up to try to address the issue.

Companies such as BetterHelp and Talkspace offer to connect patients with therapists virtually. Some take insurance and some don’t. Critics say such services don’t solve the fundamental problem of a shortage of therapists.

Another company, Mindful Care, offers urgent care for mental health issues and has 15 offices across the country, including three in Chicago. Mindful takes all types of insurance, including managed Medicaid.

“We’ve been very, very busy seeing people who want access to care when they’re having symptoms and not wait six to eight weeks,” said CEO Dr. Tamir Aldad, who thought of the idea while earning an MBA at the University of Chicago Booth School of Business.

Part of the way Mindful manages financially is by limiting therapy visits to 20 to 40 minutes each. “A one-hour session is just unsustainable the way the system is designed,” he said.

At the state level, Medicaid reimbursement rates for mental health care shot up this year — from $73.28 an hour for on-site therapy by a mental health professional before July, to $109.28 an hour starting July 1, according to the Department of Healthcare and Family Services. The state increased its total estimated behavioral health budget for this fiscal year by $390.4 million to $2.91 billion.

Last year, Gov. J.B. Pritzker signed a bill into law clarifying that insurance companies can’t deny medically necessary treatment of mental health conditions and defining the term medically necessary. He also signed bills in the last two years aimed at increasing the number of mental and behavioral health workers in Illinois through more training opportunities, a new Behavioral Health Workforce Education Center of Illinois and by allowing some mental health workers who left the workforce to reactivate their licenses more easily.

One of the biggest initiatives is in Chicago, where advocates decried Mayor Rahm Emanuel’s closure of half of the city’s mental health centers in 2012.

Rather than reopen those centers, Mayor Lori Lightfoot’s administration has boosted funding for mental health services in the city from $12 million in 2019 to $89 million in 2022. Much of that money has gone to city mental health clinics, community mental health centers, community-based organizations and federally qualified health centers.

“I see it as a step in the right direction,” said Nicole Greal, a therapist at Nourishing Hope, which hired three more full-time therapists with the city money. Nourishing Hope provides therapy for free.

Still, Greal says there’s more work to do.

“There are a good number of people who come to us and say it’s been a journey, it’s been a search,” Greal said. “We do see people who’ve counted themselves out, who say, ‘I don’t have the money or the resources.’

“Therapy is considered a luxury by some in the system. Some people will say, ‘Oh, I just assumed I didn’t have that option because I don’t have the money.’ ”

lschencker@chicagotribune.com

The Chicago Tribune is part of the Mental Health Parity Collaborative , a group of newsrooms that are covering challenges and solutions to accessing mental health care in the U.S. The partners on this project include The Carter Center, The Center for Public Integrity, and newsrooms in Arizona, California, Georgia, Illinois, Pennsylvania, and Texas.”