Michael Kamins’s twenty-year-old son had recently been hospitalized twice with bipolar disorder and rescued from the brink of suicide. Then Kamins received a letter from his son’s insurer—they had determined that he had improved and it was no longer medically necessary for him to see his psychiatrist two times a week. The company would pay for two visits per month. “There was steam coming out of my ears,” Kamins recalled, his face reddening at the memory of that day in June 2012. “This is my kid’s life!”

His son again became suicidal and violent, causing him to be re-hospitalized eight months later. Kamins, a marketing professor at the State University of New York at Stony Brook, felt he had to do something. So he found a lawyer and sued his insurer, alleging that it had violated mental health parity law by denying his son needed care.

To Kamins’s great frustration, the judge determined that he did not have standing to sue under the parity law—a decision he is appealing. Four years after receiving that letter, Kamins’s insurer has still not admitted any wrongdoing or compensated him in any way.

The case is an example of just how difficult it is for patients and families to access what they see as essential—even lifesaving—mental health care, despite heralded legislative changes designed to pry open the door to more extensive and better treatment.

In 2008, President George W. Bush signed a landmark federal parity law banning discrimination in the treatment of people with mental illnesses and substance abuse problems. Senator Edward Kennedy called the law “historic,” and praised his colleagues for finally ending “the senseless discrimination in health insurance coverage that plagues persons living with mental illness.”

The law did not require health plans to provide coverage for mental health, but it did require any plan offering such coverage to ensure that its mental health benefits were on par with those offered for medical and surgical care. Within a few years, most insurers had dropped annual limits on the number of therapy visits they would cover. Separate deductibles and higher co-payments and coinsurance also became less of a problem.

In 2010, President Obama signed the Affordable Care Act (ACA), which went a step farther: it required that all government plans and those sold on insurance exchanges provide mental health coverage—opening treatment to millions more people.

But neither the ACA nor the parity law has ensured in practice that patients receive fair and equal mental health coverage. Insurance companies were unhappy with the plan to regulate utilization management, like their determination of whether a treatment is “medical necessary,” and when those regulations were finalized the insurers said they didn’t have enough guidance to implement them properly. “We are not fighting parity. We are trying to understand it and implement it to the best of our ability,” said Pamela Greenberg, president of the Association for Behavioral Health and Wellness (ABHW), which represents insurers providing mental health and addiction coverage. “It’s a complicated law with a lot of gray areas.”

In the case of medical necessity, professional opinions can vary from case to case. And it’s not easy to compare the necessity for treatment across mental health and other medical disciplines—certainly not as easy as comparing deductibles and co-pays. But mental health care advocates have accused insurers of using medical necessity to deny coverage. Michael Kamins’s case, for instance, hinges on it—his doctor says treatment is necessary, but the insurer says it’s not. Years later, well after the crisis has passed, the courts may have to decide. “ ‘Medical necessity’ is the insurers’ last hurrah,” says Meiram Bendat, who is representing the Kamins family and has filed other cases alleging parity law violations in several states.

It’s difficult to tell the extent to which insurers are complying with the law, because agencies have been enforcing them in private, piecemeal fashion. A review by Kaiser Health News found that in the eight years since the federal law was passed, the U.S. government has not taken a single public enforcement action against an insurer or employer for violating the law. “Our problem is that these investigations are all kept secret,” said Carol McDaid, who coordinates the Parity Implementation Coalition, an advocacy group created to make sure parity laws have been properly enforced. This means that the decisions have no effect on what other employers or insurers do, she said.

That lack of transparency can also create problems for patients. Because enforcement isn’t assigned to any one federal agency—with various aspects falling to the Departments of Health and Human Services, Treasury, and Labor, as well as to state insurance commissioners—consumers appear to be left with limited or confusing options. When they feel their care has been inequitable, no single agency can be held accountable.

Thanks to his insurer denying further coverage, Michael Kamins had to tap into his retirement fund to pay for extra psychiatrist visits for his son.

Advocates say most consumers don’t even know they have new rights, and those who do know often don’t know where to turn. Just four in ten Americans are aware that the government requires insurance plans to provide mental health benefits in parity with medical benefits, according to a recent poll from the Kaiser Family Foundation. The Departments of Health and Human Services and Labor both have consumer assistance lines, but those numbers are not specifically for mental health parity concerns. “It gets very complicated for the average person,” said McDaid.

Henry Harbin, former CEO of Magellan Health, a managed behavioral health care company, said insurers have taken advantage of the minimal oversight. “They can micromanage care down to almost nothing,” said Harbin, who also served as Maryland’s mental health director before becoming a consultant. “The enforcement in this area is a joke.”

Clare Krusing, a spokesperson for America’s Health Insurance Plans, the industry’s main trade group, said it is “a misperception” that enforcement has been weak. Insurers are working closely with federal and state governments, she said, and “have taken tremendous steps to implement these changes and requirements in a way that is affordable to patients.”

Beyond limited enforcement data, it’s difficult to empirically assess the results of the parity law—the few studies that have been done have been limited in time or scope, or have been done by advocacy groups. But some analysts point to shortcomings, or at least a slow start.

A study from the health policy center at the University of Colorado School of Medicine found that at least through 2011, eighteen months after the interim regulations took effect, the parity law had little to no impact on access to or use of mental health services.

A study published in the journal Psychiatric Services found that in the first open enrollment period, from October 2013 through March 2014, a quarter of the plans sold on two state Obamacare exchanges appeared to violate the federal parity law in various ways, including requiring higher cost sharing for mental health. The states, one large and one small, were not named in the research.

“I was surprised. I would have expected that a couple years after the law was implemented it wouldn’t be that high,” said one of the authors, Haiden Huskamp, a professor in the Department of Health Care Policy at Harvard Medical School.

In a 2015 survey by the National Alliance on Mental Illness, an advocacy group for mentally ill people and their families, patients said they were denied coverage because treatment was deemed “not medically necessary” twice as often for mental health as for other medical conditions.

In March, President Obama weighed in, suggesting that parity was at risk of becoming “an empty phrase.” He announced the creation of a parity task force to create tools and guidelines to hold insurers accountable. “We’ve got to let the insurance carriers know that we’re serious about this,” Obama said during a panel discussion at the National Prescription Drug Abuse and Heroin Summit in Atlanta, Georgia.

Several bills are pending that would strengthen the parity law by requiring insurers to disclose the documents revealing how they make coverage decisions on both the mental health and medical-surgical sides of their business. Carol McDaid said that change is crucial to allow advocates, lawyers, and patients to determine and demonstrate whether a violation has occurred.

As for Kamins, he is continuing to wage his own private battle. His court case is proceeding as a breach of contract and deceptive business practice suit, while Bendat said he also plans to bring the parity law violation to an appellate court. Kamins said he wants a change in the insurer’s policy, reimbursement for benefits denied, and attorneys’ fees.

Kamins said he had to tap into his retirement fund to pay for extra visits for his son. After a year of ups and downs, including rehospitalization, the young man was able to return to college in the fall of 2013. The next year, his father’s employer contracted with a new insurer, which Kamins said gave the young man greater access to care and helped him become stabilized. Now twenty-four, he is scheduled to graduate this fall.

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Jenny Gold is a senior correspondent at Kaiser Health News, a national nonprofit news service covering health policy issues. It is an editorially independent program of the nonpartisan Henry J. Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.