‘Sad commentary’ on mental health help: Money matters in treatment access
May 23, 2017 | By Marie Wilson and Elena Ferrarin
Among all the sad realities about mental health care, here’s one that’s hard to shake: Money matters.
Even comfortably middle-class suburban residents find it challenging to pay for mental health care, so the cost of treatment can be discouraging for many who need help, experts say.
Federal and state mental health parity acts require insurance to cover mental health treatment under the same terms as other conditions. But psychiatrists say, in reality, some plans still place limits on the services their patients can receive.
Among a population of almost 8.4 million in Cook, DuPage, Kane, Lake, McHenry and Will counties, 1.2 million people live below the poverty level. Overall, one in two people will have a diagnosable mental health condition during their lifetimes, and one in five adults in any given year.
That means as many as 239,300 people living in poverty here could need mental health help every year. If it wasn’t for nonprofit agencies that subsidize treatment and psychologists who offer sliding fee scales, people who are homeless, jobless or low-income would struggle even more to lead a mentally stable life, experts say.
“If your family has resources, your long-term prognosis is so much better than if your family doesn’t have resources,” says Ryan Dowd, executive director of the Hesed House homeless services agency in Aurora. “It’s the difference between getting well and living a perfectly happy life with some therapy versus being homeless for your entire life.”
An individual session with a counselor costs between $130 and $270 in the suburbs — fees that can be covered in full or in part by insurance or agencies with charitable backing.
Specialized treatment can cost even more — up to $25,000 a month at some facilities, say parents whose children have needed residential stays at psychiatric centers.
The high price tag leaves the most vulnerable without a safety net, says Diane Henning, behavioral health coordinator at Open Door Health Center of Illinois in Elgin. And it is among the reasons 54.5 percent of Illinois adults with a mental illness are not receiving treatment, according to Mental Health America.
“A lot of people that have mental health concerns are showing up in the prisons and the jails and in homeless shelters, and I just think it’s awful,” Henning said. “It’s a sad commentary about where we are as a society.”
Christy Duritza of Elgin has seen that commentary play out as the financial burdens of her son’s care have mounted.
She has borrowed from her 401(k) and racked up thousands in debt to get her 21-year-old son, who has schizoaffective and bipolar disorders, into treatment, including a seven-week stay at a $25,000-a-month inpatient facility in Florida that accepts patients with mental illness and substance abuse.
Insurance from Duritza’s job in sales covered only $5,000 of that stay.
“He was getting better,” she said of her son, who has paranoid delusions and is unable to hold a job. “But he needed to stay there longer.”
Greg and Maralee Parker of Elgin have fought for care for their 28-year-old daughter, who has bipolar disorder.
After her first hospitalization following a suicide attempt, the Parkers persuaded their insurance company to cover her hospital stay as if it were in-network, yielding thousands in savings. They also petitioned to have Social Security declare her disabled before age 22, which brings a higher disability income. They diligently reapply for her dental coverage every year, armed with a stack of paperwork they constantly keep up to date.
“I’m a nerd and I researched it,” says Greg. “A lot of people don’t know this stuff.”
“There are just a lot of hoops to jump through,” adds Maralee. “And if people don’t understand that, that’s really a barrier.”
Working role models
Struggles with holding a job also can be a barrier, as was the case for Irene O’Neill of West Chicago during the earlier stages of her 41-year journey with bipolar disorder.
“The first 20 years were really rocky. I wouldn’t say I was recovering that well at all,” said O’Neill, 61, who said her hospitalizations also complicated her pursuit of a college degree. “I’d lose a job every year or two. I’d end up in the hospital and lose my job.”
O’Neill later got a position at Bell Labs, where she worked until the company offered early retirement in 2001. She then took on two part-time jobs for a few years before becoming a community center support specialist in 2004 with the DuPage County Health Department’s behavioral health division, where she can support others.
“Those of us who work full time are able to work and be role models for others,” she said. “But some people who are unable to work might have more serious illness or a lot of trouble with staying at a job.”
Peter Austin is among such people. His epilepsy, late-onset bipolar disorder and depression prevent him from holding a steady job. Yet, he says, “things couldn’t be better.”
He lives in a modern one-bedroom apartment at Artspace Lofts in Elgin, which provides affordable housing for artists. There, he paints, sculpts, makes prints and does woodwork, selling some of his art to supplement income from his Social Security disability check and the Medicaid and Medicare benefits that afford him his medications.
“It’s been a big God’s blessing to me,” he said about the sliding-scale rent that allows him to afford living on his own. “It’s amazing.”
‘Trying to survive’
Applying for the disability benefits Austin receives can be burdensome for others who can’t work because of their condition, says Revita DeChalus, a chaplain and case manager at AMITA Health Alexian Brothers Center for Mental Health in Arlington Heights.
The applicant must have been out of work for at least nine months and receiving medical care for at least a year. But DeChalus says many clients newly diagnosed with a mental illness are reluctant to seek treatment.
“People with paranoid issues aren’t likely to trust many people,” she said.
Many of her low-income clients stay in all the time, which only makes their fears of the world increase — and their capacity to support themselves decrease. She’s helped people who are nearly homeless and living in temporary residence hotels, without a car, food or anything but a microwave in which to cook.
“It’s a difficult, long process of trying to survive until one does have some source of income,” DeChalus said.
She comforts applicants and connects them with food pantries and faith communities as they slog through paperwork and wait for disability income of about $735 a month to set in.
Long waiting lists
Social Security and Medicaid help people get by, but when it comes to getting treatment, it often takes longer to find a psychiatrist who accepts Medicaid, says Dr. Deepak Kapoor, also a psychiatrist at AMITA in Arlington Heights, who manages a caseload of between 500 and 600 patients.
Even with private insurance, Bartlett native Shaan Shah struggled to find a psychiatrist who wasn’t booked solid for two months. He wanted to see one after he began experiencing puzzling waves of positive and negative emotions two years ago.
“A lot of the psychiatrists that are covered by insurance are booked out for a long time,” said Shah, 28, who started and sold his own technology education company and now lives in Chicago. “During that time, you get in a pretty desperate state where you want to see someone soon.”
Shah recognizes his advantages as he manages his bipolar disorder: A supportive family, an entrepreneurial spirit, a brother who is a doctor, a large circle of friends.
But only through a friend of his brother’s, who was in psychiatry school, was Shah able to find a psychiatrist in 2015.
“Getting an opportunity to see a psychiatrist is freaking hard,” Shah said. “I don’t understand how someone who doesn’t have family support, friend support or some resources financially, how they would do it.”
Despite his efforts at treatment, Shah says he’s in one of his down phases of “dark thoughts” when he lacks any desire for his usual routine of exercise, work and spending time with his friends.
“When I’m in a healthier state, one of my big pushes is making psychiatrists more accessible,” said Shah, who has spoken out with social media posts and podcasts about the importance of treatment and acceptance for people with mental conditions. “I can’t even imagine people that have a low income trying to deal with this stuff or people who don’t have the cultural network.”
Therapy for $5
Many of the clients Mount Prospect bilingual psychologist Edgar Ramos works with can’t afford treatment.
“For a lot of clients, it’s like, ‘Hey, man, you got five bucks? Let’s do it for five bucks,'” he says. “If they make $8 an hour, then we’re going to do our session for $8.”
Ramos says he hesitates to counsel anyone for free, more for their own good than for his bottom line. When clients pay for a service, he says they get more out of it because they recognize its value.
“I don’t do this for the money, obviously,” Ramos said. “I love what I do. I love who I do it for.”
360 Youth Services in Naperville is another agency that adjusts its fees based on clients’ ability to pay. If the agency required all clients to pay the full $130 hourly fee, it would serve only 30 percent of the 130 youths and families it assists each month, says Margot Smith, clinical director of counseling services.
The agency sets a “manageable fee” based on household income and fixed costs that amount to a monthly average of $12.26 a session.
The trick for patients is finding a slot at an agency that makes affordability a must.
“If it wasn’t for us being able to make that manageable fee,” Smith says, “they might not get the services.”