When his adopted son, then 10 years old, started to hear voices and act violently, Matthew Timion knew the boy needed psychiatric help. He did not realize how difficult it would be to pay for it.
Timion, a computer programmer who at the time lived in Oak Park and now lives in Moline, said he was in a continual fight with his private insurance and the state to fund his son's stays at numerous psychiatric hospitals.
After a hospital stay when the boy was 13, Timion placed him in a $300-per-day residential facility where he expected treatment to last for nine months to a year, per the advice of multiple doctors. But Timion's insurance, which required weekly updates, after a month decided the boy was no longer a threat and that it would not cover any more days, Timion said.
"I remember thinking, This is insane that we have zero resources for people who could turn into violent shooters," said Timion, who asked that his son not be named. The boy, who was 3 when he was adopted, may have experienced trauma in early childhood, Timion said, and had a history of kicking holes in the wall and pulling knives. When the family started hiding potential weapons, his son began breaking light bulbs to get shards of glass to use to cut himself, Timion said. He was afraid to bring him home.
"I'm trying to prevent the next headline," he said.
It has been 10 years since Congress passed the federal mental health parity law, which prohibits insurance plans from imposing stricter coverage limits for mental health and addiction treatment than for physical medical conditions. But mental health advocates, as well as consumers like Timion, say coverage disparities persist, and they are promoting greater public awareness of the law and tougher enforcement.
Advocates say insurers are abiding by the parts of the law that prohibit charging higher deductibles or setting stricter limits on treatment frequency for behavioral health services. But they see potential violations when patients and providers are told services are not covered because they are medically unnecessary, or because that treatment is subject to pre-authorization requirements — decisions that are more difficult to dispute but make behavioral health services less accessible.
Insurance industry representatives disagree that mental health and addiction get short shrift from health plans.
"I don't think it is a fair representation to say that there are parity violations or that the parity law isn't being implemented fully," said Samantha Olds Frey, executive director of the Illinois Association of Medicaid Health Plans, which represents insurers that manage the state's health insurance program for the poor.
Health plans conduct self-audits and work closely with providers and state regulators to ensure that they are covering mental and physical health equally, Olds Frey said. A state parity law, more stringent than the federal regulations, has removed ambiguity around some of the more subjective measures, like medical necessity in substance abuse cases, she said. Other barriers to mental health treatment, such as a shortage of providers, need much more improvement, she said.
But mental health advocates point to data that tie insurance practices to access gaps for behavioral health care. Specifically, lower reimbursement rates for behavioral health visits lead some providers to not join insurance networks, leaving many people without options because they can't afford to pay the higher out-of-network costs.
In Illinois, 17.8 percent of behavioral health office visits were out of network in 2015, nearly four times the share for primary care office visits, according to a report published in November by the actuarial firm Milliman, which reviewed claims data of 42 million people across the country covered by preferred provider organizations. Reimbursement rates were 13.4 percent higher for primary care visits than behavioral health visits in the state.
To Patrick Kennedy, founder of the Kennedy Forum, an advocacy group that seeks to end mental health and addiction stigma and discrimination, the report shows that implementation of the parity law has fallen short.
"The reason for the law was that there was an historic disregard for people with these illnesses because they were seen as moral failings rather than medical issues," said Kennedy, a former Democratic congressman from Rhode Island who became an outspoken mental health advocate after his own experience with drug and alcohol addiction.
"Unfortunately, what we're seeing is that this is still too often the case."
At the Kennedy Forum, the goal on the 10th anniversary of the federal parity law is to push for more action from regulators and the courts to make sure that behavioral health services are covered equitably.
It's often up to patients and families to call out questionable coverage decisions, and the complexity of the parity law — if people know about it at all — means they frequently don't, advocates say.
"They're often going through a crisis, with little understanding of their rights or ability to exercise them," said David Lloyd, director of policy and programs at the Kennedy Forum Illinois.
Timion said he was lucky he had the time and tools to figure out how to pay for the care his son needed.
The same day he got the call telling him his insurance company had deemed his son no longer a threat, the boy attacked another resident and was taken to a psychiatric hospital, Timion said.
With the help of family and professional connections, Timion was able to get the state to fund a return to the residential facility while he figured out other options. Eventually Timion secured a state individual care grant, which funds care for kids with serious mental illness until they're 18, and got his son into a $500-a-day residential facility in Missouri that specializes in early childhood trauma.
Nearly a year later, the boy, now 15, is "doing great" and plans to move back home in August, said Timion, who is no longer afraid of his son.
"If I've learned anything from this process it is that you have to assume that no one else is going to figure it out for you," Timion said. "You have to start calling people until you get the answer you know you're supposed to get."
Illinois in 2015 sharpened its state mental health parity law to be the strongest in the nation, said Sara Howe, CEO of the Illinois Behavioral Health Association.
Federal parity laws cover employer health plans as well as Medicaid and the Children's Health Insurance Program, while Illinois' parity law also covers municipal and county plans. (Medicare is not covered by parity protections, and school districts can opt out.) Illinois' law also contains specific requirements for opioid treatment coverage and mandates a public education campaign.
The stakes are high, Howe said, because inadequate insurance coverage for behavioral health leads to more expensive and dangerous problems down the road.
But mental health and addiction providers in the state say they get pushback from insurers that they doubt would occur with physical conditions.
Sally Thoren, executive director of Chicago programs at Gateway Foundation, a substance abuse treatment nonprofit that serves 14,000 people annually in Illinois, said people who have had multiple stays at behavioral treatment centers are often denied coverage because insurers question their response to treatment.
"They're challenging the motivation of the patient, like it's their fault," she said. "They don't ask a cancer patient what they're going to do differently to arrest their cancer."
She also sees some insurers limit length of treatment by routinely questioning medical necessity after a certain number of visits, without considering the severity of the individual's condition.
The consequence, she said, is that people get incomplete care, and then return sicker, if they don't first die of an overdose.
Gateway Foundation, which has 57 facilities across the country, has a team of advocates who appeal coverage denials. Those appeals are successful more than half the time at the Chicago center, said Thoren, who adds that many other organizations don't have the resources to appeal on behalf of their patients.
Illinois' parity law has helped, as it requires insurance companies to make medical necessity determinations using only criteria established by the American Society of Addiction Medicine, and it requires insurers to make their reasons for denial available for review, advocates say.
Still, determining medical necessity can be subjective.
"They have a doctor in their office who says they don't need it, I have a doctor in my office who says they do," said Gateway CEO Tom Britton. "How do you literally prove it? That's the problem."
Olds Frey said insurers recognize that untreated mental illness costs them more in the long run, and it is not in their financial interest to deny coverage.
"It is penny-wise and pound-foolish to keep a member out of mental health treatment, that is not what health plans are trying to do," she said. People with diagnosed or treated behavioral health needs make up 25 percent of Medicaid members but 56 percent of Medicaid money spent, most of it on medical conditions, according to 2015 data from the Illinois Department of Healthcare and Family Services.
Insurers also are balancing coverage requests with concerns about costs.
"It is … the responsibility of health plans to be good stewards of finite resources," said John Foley, CEO of Northbrook-based Benefit Consulting Group, which consults with employers about their benefits programs.
The complex nature of mental health treatment creates a "natural tension" between providers and health plans, which don't want to throw additional resources at treatment that has plateaued, he said. Often plans authorize the first two weeks of a residential stay and check on progress to ensure the person is responding to and wanting care, he said.
Unlike fixing a broken leg, where the cause and cure are straightforward, mental health treatment is a long and winding road.
"If we told the insurance companies to just pay it, the other side of the coin is that there's no check and the costs go out of control," Foley said.
That said, mental health treatment and parity requirements are not the source of ballooning health industry costs. Mental health and substance abuse make up just 6.6 percent of total health care expenditures in the U.S., down from 9.4 percent in 1986, Foley said.
Blue Cross and Blue Shield of Illinois said it is committed to providing members with access to quality medical and behavioral health care.
"We have clinical teams that review the latest scientific data to create medical policies that determine benefit coverage," spokeswoman Colleen Miller said in an emailed statement. "We also offer members the opportunity to appeal decisions, including external review by outside physicians."
But advocates say the burden shouldn't be on the patients to call insurers out.
A big push by the Kennedy Forum is to encourage state attorneys general to pursue parity cases in court, as legal action "is the most effective tool to get insurance companies to change their behavior," Kennedy said.
New York Attorney General Eric Schneiderman has been leading that charge for several years, securing settlements with numerous health insurers that resulted in plan reforms and $2 million in restitution for people whose claims were denied. Most recently, Cigna and Anthem agreed to eliminate pre-authorization requirements for medication-assisted treatment for opioid addiction.
At Illinois Attorney General Lisa Madigan's office, "we are closely monitoring the issue and want people to be aware that they can file complaints," said spokeswoman Eileen Boyce. The office hasn't received any parity complaints so far, she said.
Complaints have rolled into the Illinois Department of Insurance, which is pursuing parity enforcement on several fronts.
The regulatory agency received 37 consumer complaints last year related to mental health and substance abuse coverage, and took corrective action in 19 cases to get consumers the benefits they sought, said agency Director Jennifer Hammer. It received another 111 requests for external review, a process consumers can use when they are denied coverage for specific reasons, such as medical necessity, and have exhausted the internal appeals process at the insurance company. An independent review organization decided in favor of the consumer in 44 of those cases.
The department also reviews insurers' policies before they enter the market, and last year issued 591 objections related to mental health and substance abuse parity that had to be addressed before the policies could be sold, Hammer said.
This year the agency for the first time also is conducting targeted investigations of insurance companies to search for parity violations, which will carry penalties, she said.
That could relieve some of the burden on patients to hold insurers accountable, which they often are not in a position to do.
Luke Tomsha had been using heroin for 14 years when he decided he was done living a double life, and checked himself into a rehab center in Rockford.
The University of Illinois engineering graduate — who was spending $5,000 a month on at least 12 bags of heroin a day — had tried to detox before, but this time he quit his job as tech director at a local grade school and committed to going to a rehab for the long haul.
But after less than a week, Tomsha said, he was discharged. He had 24 hours to get out.
"I was still going through heavy withdrawals," the La Salle native, now 40, recalls of the incident three years ago. "I knew I would just get my medicine" — heroin — "if no one was watching me."
Tomsha's mother raced from her job running a busy Italian restaurant to pick him up and bring him home. Desperate to prevent a relapse, she spent five sleepless nights peering into his room to make sure he hadn't escaped, while scrambling to find another rehab center that could take him.
Amid the chaos, the family never got a clear reason for Tomsha's abrupt discharge. They never fought his insurance company for a longer stay or questioned if there had been a parity violation, and they're still not sure if it was an insurance issue at all.
They do know that proper treatment has kept him heroin-free, though it came with sacrifice.
Tomsha's mom, Paula Verucchi-Tomsha, got a $15,000 bank loan to pay for a six-week stay at a rehab center in New York, which didn't take insurance. His father and brother drove him the 15 hours to get there.
"I didn't care if we could afford it or not," Verucchi-Tomsha said. "I just wanted him to have a safe place."
Tomsha now runs a nonprofit called the Perfectly Flawed Foundation, which helps kids whose parents have died of drug addiction. It raises money to expose kids to art, music, yoga and other activities where they can find happiness outside of substance use, to "break the cycle," said Tomsha, who has an 8-year-old son.
Tomsha, who has lost multiple friends to drug-related deaths, said it isn't just addicts who suffer from insufficient access to affordable mental health treatment, especially in communities like his with few resources.
"I'm getting more and more calls for people looking for counseling for the kids left behind," Tomsha said. "People don't realize the impact this crisis has on the mental well-being of the families and community involved."