Physically disabled? No problem. Mentally disabled? Coverage is limited, harder to get.

Thomas Lane was visibly sick. His clothing hung loose, his complexion seemed blanched, his vision blurred in and out. Already a slight man, he lost 45 pounds in a five-month period.

More than four decades earlier, while in his 20s and serving in the Navy, Lane learned he had bipolar II disorder. For years after his diagnosis, he zigzagged in and out of hospitals, homeless shelters and treatment facilities. He survived two suicide attempts, the most recent, in 1998, so severe his mother flew from Albuquerque to Reno to say goodbye. He had researched his plan, and written goodbye letters to loved ones.

When he awoke, astonishing the hospital staff, doctors warned he might never be able to see in one eye.

Since then, Lane had fully regained his sight, met and married his soulmate, and developed a "very strong faith" in God. His work at a health care company, drawing on personal experiences to help patients with mental health issues, gave him energy and purpose. He'd been overseeing and leading peer support services for 14 years.

But now, it was the summer of 2020, and he recognized, once again, he was a danger to himself. Reluctantly, he requested a leave. Even though his employer supported him at first, stepping away felt like failure. That, in turn, exacerbated his symptoms.

Lane applied for a Family Medical Leave of Absence, the first step to getting long-term disability benefits. FMLA runs concurrently with short-term disability benefits, with the idea that, should workers need to take long-term disability, they still receive a portion of their income in the first weeks. Typically, long-term benefits kick in after a person has been disabled and off work at least 90 days.

Just days before he was supposed to return to work, Lane got a call from his manager, saying he had lost his job protection six weeks ago. He didn't understand.

An email from human resources, delivered to him Jan. 27, 2021, informed him that his job protection under FMLA had been exhausted as of Dec. 14, putting him at the "terminable level" outlined in his company's policy. Lane was furious. A clock had started in September, and the ticking had stopped three months later without his knowledge.

What Lane discovered is one symptom of an affliction in the benefits system that impacts about 3.5 million American employees out of work for a behavioral health disability. While insurance for physical ailments has improved steadily, coverage of mental health is decades out of step with the knowledge of its causes, impacts and treatment.

Progress toward health coverage parity, in which mental health issues are covered in the same way as physical health issues, has been glacial, even as America's mental health crisis continues to soar.

To get a sense of the disparity, the Journal Sentinel analyzed five years of lawsuits, filed between 2019 and 2023 in Wisconsin federal district courts, over the denial of long-term disability claims. More than one-third involved workers with mental health conditions. Some were reeling from the trauma, some coping with catastrophic accidents, and some, like Lane, were struggling to manage severe and persistent mental illnesses.

Using that measure, the percentage of mental health-related lawsuits in the Journal Sentinel sample was far out of proportion, and indicates a much higher denial rate. That reinforces what is accepted as gospel among those involved in the issue.

The insurance denials and sudden terminations of benefits came in part because such disabilities aren't always visible, and psychological pain is deemed subjective. More than that, how we understand, and provide coverage for, mental illness in the workforce is chambered to the past. It reflects a mindset, articulated by one neuropsychologist who spoke with the Journal Sentinel, that a mental illness diagnosis used to be forever, something you didn't come back from the way you could come back from, say, a broken femur.

Even the language embedded in disability policies, with references to a "mental/nervous limitation," is a nod to an outdated understanding of behavioral health.

Significant impairments, unequal coverage

Roughly half of working Americans are covered under disability insurance, which provides short- and long-term income protections in the event of a sickness or injury. Those protections ensure that employees receive 50% to 70% of their income while they're out of work.

But the impairment you have changes the scope of those protections.

Should someone diagnosed with severe impairments from a stroke become unable to work, they can apply for long-term disability and be protected until retirement. The longest someone with a mental health disability or substance use disorder can take is 24 months, even if, at that point, they're still not capable of work.

Fewer than 1% of group disability policies sold in the United States have unlimited mental health and substance use disorder benefits, according to a report from an advisory council on Employee Welfare and Pension Benefit Plans, known as the ERISA Advisory Council. ERISA, which stands for Employee Retirement Income Security Act, is the federal tax and labor law, established in 1974 and sets standards for employee benefits plans.

Most people don't need more than 24 months to take leave for a mental health condition, said Mark DeBofsky, principal attorney at DeBofsky Law in Chicago, and a member of the 2023 ERISA Advisory Panel. "But for those who do, those people are no less ill than somebody with stage IV cancer or advanced MS or an intractable spinal impairment or untreatable coronary artery disease," DeBofsky said.

The 2023 ERISA Advisory Council raised the question of whether this lack of parity is discriminatory. Its 61-page December 2023 report, the result of a yearlong investigation into the question, recommended the Department of Labor promote the elimination of the 24-month limitation.

Several U.S. Departments, including Labor, have unveiled rules on expanding mental health parity since then in health insurance. Andrea Palm, deputy secretary of the U.S. Department of Health and Human Services, told the Journal Sentinel during a visit to Milwaukee Sept. 9 that federal departments are "very conscious" that mental health conditions and substance use disorders often co-occur with physical disability issues.

"There's still lots of work to do and and still friction among the requirements for those different programs and services," Palm said.

'Discretionary clauses' and the 24-month limitation

In the last five years, 89 people in Wisconsin filed lawsuits because their long-term disability claims were either denied outright or terminated after 24 months. Of those, 31 had symptoms of a mental health condition. They were grant writers and truck drivers, bankers and nurses, mechanics and customer service reps, personal trainers and program managers.

The Journal Sentinel analysis showed that in many cases, insurance companies hired physicians to review a claimant's medical file and come to a conclusion about their condition — conclusions that often contradicted a claimant's own team of specialists.

Wisconsin claimants are not alone in facing this hurdle. In every state, an insurance company's hired physician have overruled a provider actually providing treatment.

Further, the 24-month limitation accrues over the course of an employee's tenure with a company. If there are recurrent episodes, the employee would not receive another 24-month period, according to Jessa Victor, a shareholder attorney at the Madison office of Hawks Quindel. Victor specializes in handling employee benefits matters and, primarily, long-term disability claims.

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Jessa Victor, an attorney with Hawks Quindel, has represented hundreds of clients fighting to get long-term disability for their mental health conditions.

Mike De Sisti / Milwaukee Journal Sentinel

Victor has represented hundreds of disability claimants since she joined the law firm in 2018. She learned quickly that, for people appealing the denial of their claims for mental health or addiction, insurers almost always have the upper hand because of "discretionary clauses." In essence, insurance companies are allowed to interpret the provisions of their plans and determine eligibility as they see fit.

The role of the judge in these cases, Victor said, isn't to determine whether someone has a disabling condition and should have been paid benefits. Instead, it comes down to whether the insurance company was reasonable in how it interpreted its own policies.

"It gives the benefit of the doubt to the insurance company's decision, even if a judge disagrees with the decision," Victor said. "If they can't prove that the decision was unreasonable, it has to be upheld."

In California, not only are discretionary clauses banned, but only nonprofit professional specialty organizations can make such determinations, said Meiram Bendat, a lawyer from Santa Barbara who authored California's mental health parity law, SB855.

"It's really an idiotic standard that the U.S. Supreme Court allowed to go into effect several decades ago," Bendat said. "The premise that employers and third-party administrators that review their claims are fiduciaries and are acting in patients' best interests is an insane proposition. They're acting in their own best interests."

A traumatic incident, followed by turmoil

During a work trip to Orlando in July 2019, Shannon received a call from her younger brother. He had been watching her three young boys back home in northern Wisconsin. He informed her they were stranded on a boat in the middle of a lake, the engine dead. Her kids were swimming in the water at dusk, far from the now-free floating boat.

As coworkers escorted her to her hotel room, she crumpled in their arms, unable to stop crying. The rest of the day, she paced her hotel room, and that night was unable to sleep. The next morning, she arrived 45 minutes late to a meeting. Her boss mistakenly assumed she’d had too much to drink.

Eleven months earlier, her 37-year-old husband had died in a freak electrocution accident in front of her and her three kids. She was 34 at the time and her boys were 3, 7 and 9 years old.

In the first year after her husband died, “I just kept working," Shannon said. "I wasn’t sleeping, ever. I was having nightmares all the time, waking up in huge puddles of sweat, like I had just jumped in the pool. My job is not directly supervised, so my issues were not seen by others.”

When she told her psychiatrist what happened on her work trip, he urged her to apply for a short-term disability claim and get three months — October through December — to finally process what had happened.

Almost immediately when she went on leave, problems arose. Nobody from the insurance company returned her psychiatrist's calls about paperwork they wanted. Shannon made contact, but was told the insurance company required doctor-to-doctor communication, and she didn’t have access to her medical documents anyway.

Then, a flurry of letters began. If she didn’t immediately return to work, her insurance company stated, she would be terminated. By that point, when Shannon talked to her psychiatrist, it wasn't about processing her husband's death and treating her PTSD, it was about dealing with her insurance situation.

In January 2020, Shannon returned to work, where an email was waiting for her. Her company said her leave had never been approved by her insurance company and now she owed her company $23,000 in pay she had received while out.

A back-and-forth argument continued. In June 2020, her insurance company called for an independent medical exam of Shannon.

"I'm confused as to what a doctor is going to be determining about my mental health issues from 6-9 months ago. I feel like this is an effort to discredit me and/or my doctor," Shannon wrote in an email to her attorneys.

Her attorneys told her to produce the police report detailing her husband's death, which would help her case. She had never read it, and though she accepted that it could make her case stronger, going over it re-traumatized her.

Finally, Shannon won approval for the disability leave she had taken months earlier. She still had to pay $4,306, a result of a clerical issue. Plus she had to pay legal fees.

"When someone in the military goes overseas, sees someone they've known for three to six months get shot, and comes home with PTSD, that's accepted," Shannon said. "But somehow it's a question whether my spouse of 16 years dying violently in front of me and my children is going to cause PTSD. All I asked for was 12 weeks off."

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Julie Su, acting U.S. Secretary of Labor, speaks at Wellpoint Care Network in Milwaukee in September 2024. National and state leaders convened to discuss mental health parity.

Mike De Sisti / Milwaukee Journal Sentinel

No one wants to endure a disability

Thomas Lane, 64, sat in his Wisconsin Dells home on a drizzly August afternoon, his 14-year-old golden retriever Millie whimpering nearby.

Each time Millie made a sound, Lane perked up, asking if she needed to go outside or have some food. Some days, Lane said, caring for his aging and disabled dog is the only reason he can think of to stay alive.

Lane ultimately won his appeal. For 12 months, the maximum allowed time per his employer policy, he received 60% of his income. Now that it's run out, he picks up work where he can — helping his wife with invoices at her company, attempting to sell woodcrafts at fairs. He's also able to collect Social Security Disability Insurance payments, which took eight months to get approved.

"I just was trying to do what I could do at the time. I can't work now. I wish I could," Lane said.

"I would sell my soul to not have a bipolar disorder."