Kristin Jortberg-Dubois said her “world has gotten very small” since doctors diagnosed her with leukemia two years ago. She deals with extreme fatigue every day, and often a trip to the grocery store or a short walk is all she can muster. Combined with the aftereffects of a concussion and a continuing major depressive disorder, Jortberg-Dubois has been unable to work.

“I struggle every day. I have to take naps, and I’m in bed by 7 p.m.,” said Jortberg-Dubois, 60, of Arundel, a former special education teacher for Wells and Biddeford schools.

But despite her ailments, Jortberg-Dubois was shut out of a disability benefit through the state retirement system she paid into for 24 years. A medical board recommendation conducted for the Maine Public Employees Retirement System in September 2019 concluded that the leukemia had not progressed far enough in Jortberg-Dubois’ case to meet the definition of a permanent disability.

“The objective medical record does not support functional limitations for chronic lymphocytic leukemia (cancer of blood and bone marrow),” the report said.

Jortberg-Dubois is far from alone, as about 30 to 80 Mainers are denied disability through Maine PERS every year.

Advocates are pushing to revamp the system in the Legislature this session, and there appears to be momentum to make significant changes.

“You work so hard, and this is what you end up with should you become ill,” said Jortberg-Dubois, whose appeal of the benefits denial is still pending. “This takes an emotional toll. I felt like I was not appreciated. It’s very devaluing.”

Almost everyone connected to Maine PERS – including the Maine PERS executive director, attorneys, patients and some lawmakers – agrees that the system needs major reforms because Mainers who deserve a disability benefit are instead being turned down.

About 2,000 current retirees have qualified for permanent disability under Maine PERS, while the system pays for pensions for about 46,500 state and local government employees. The system includes some but not all teachers, clerks, firefighters, police officers and state government workers.

Maine PERS is designed to make it difficult to receive disability – more difficult than qualifying for disability under Social Security. People who are in the Maine PERS system bypass the Social Security system and instead receive their pension and – should they need it – disability benefits through the state system. Those who qualify for disability – which requires patients to prove that they are permanently disabled – receive 59 percent of their pay.

BILL SEEKS CHANGES

But many say Maine PERS is not there for them when they need it most.

A bill by Sen. David Miramant, D-Camden, would make a number of reforms, including changing the definition of disability to make it more closely match the Social Security definition and to employ neutral hearing officers. The bill would also abolish a medical board that makes recommendations on cases yet doesn’t meet with applicants or hear directly from doctors.

Jerry Conley, a Portland attorney who represents people applying for disability, said the system is complex, time-consuming and stacked against the applicant. For instance, even if a case goes to arbitration, the arbitrator is hired by Maine PERS instead of a neutral party.

Sandy Matheson, the Maine PERS executive director, agrees changes need to be made. She recommends the state create an employer-paid long-term disability benefit for those who are disabled but can’t meet the current Maine PERS definition of disability.

Matheson said the long-term disability benefit would be less costly to the state than expanding benefits under the Maine PERS system.

Both reforms would entail about $3.9 million in payroll costs, Matheson said, but expanding the definition of disability under Maine PERS would cost the state an additional $17.25 million to shore up the state pension fund. A long-term disability benefit could be purchased from a national insurance carrier and would not require additional state funds beyond the $3.9 million in payroll costs.

“We’re very much on board with helping to pass laws that cause less frustration for people and trying to do better for our members,” Matheson said.

Conley said he’s skeptical that a long-term disability benefit would be as helpful for disabled workers when compared to expanding Maine PERS benefits, but he’s willing to listen to more details from Matheson.

“Right now, I see it as a total end run around their responsibilities,” Conley said.

But Conley and Matheson both say they see a path for a compromise.

REFORMS SLOW

As officials and lawmakers discuss how to reform the system, people are suffering while being denied or waiting years for their cases to go through the system. If denied on an internal appeal, applicants can go to court, but it’s time-consuming and costly.

Advocates pushed for Maine PERS reforms in 2015, after former Wells Elementary teacher Bob Sprankle was denied disability despite suffering from debilitating chronic pain stemming from hernia surgery. Sprankle died in December 2015.

A reform bill passed in 2016, but without changes to the definition of disability or significant funding, the reforms did not have any impact, said Conley, the attorney.

“I think it’s gotten worse since then,” Conley said. “People don’t even try anymore, it’s so difficult to get disability.”

Maine PERS statistics show the number of applications for disability has plummeted, from 167 in 2015 to 84 in 2019. However, benefit approvals have been fairly steady, ranging from about 40 to 60 per year. As applications declined, approval rates increased during the same time frame, from 38 percent to 65 percent in 2019.

Conley says the approval rate has gone up because only the most severely disabled people are applying for benefits, while others who are still truly disabled but would probably be rejected for benefits are no longer bothering to apply.

While most state retirement systems offer a disability benefit, it is nearly impossible to compare them, according to a 2019 report by the National Association of State Retirement Administrators. States have varying criteria for granting disability and payouts, and many other factors are different.

“There is wide variation in the plan design components of the disability benefit. The result of these differences in eligibility standards, benefit calculations, and other factors, is that the disability benefits provided by public retirement systems are highly individualized,” the report said.

Some states have reported issues with retirement disability fraud – including California. But in Maine fraud is minimal, Matheson said, in part because it’s difficult to qualify for disability.

To root out fraudulent claims, “we interview all of our disability retirement applicants and review their situation with their employer. We also review the medical records members provide to us as well as help them to obtain additional medical records needed,” Matheson said.

SUFFERING FROM DENIALS

More than a dozen Mainers who testified at a Jan. 29 public hearing about Miramant’s bill, L.D. 1978, told the Legislature’s Labor and Housing Committee that they were suffering from the denials. The bill will be up for discussion by the committee in the coming weeks.

Kathy Morse, 58, of Berwick, a former school aide and state social worker, said she was denied disability three years ago, and her family’s financial problems are deepening while her case has remained pending.

“We are getting deeper and deeper into debt, maxing out our credit cards. That’s my money I put in the system. I should have access to it,” Morse said.

Morse has been in injured in car accidents – including a major head-on collision in December 2014 – and uses a wheelchair or walks short distances with a cane. She has post-traumatic stress disorder, depression, memory deficiencies, nerve damage and other neurological problems.

She said her family’s income has been cut nearly in half, and they have more than $20,000 in debt, about half of it medical debt.

“We have a hard time affording groceries and gas,” Morse said. “We think about doing things and say, ‘Forget it.’ We don’t have the money.”

Jortberg-Dubois said money is tight, but she, on her own, purchased a long-term disability benefit through a national insurance company several years ago. She said if she hadn’t done that, she would really be suffering financially, although the benefit she receives is less than if she had qualified for Maine PERS.

“I am really lucky I did that or I would really be in bad shape,” Jortberg-Dubois said.

Jortberg-Dubois said that under the present disability system, workers struggle to stay in jobs when they are sick and not performing well. She said she tried to stay at her job in the school system but couldn’t do it.

“What about the kids? How were the kids being served when I couldn’t even draw up a decent lesson plan?” she said.

Morse said there “has to be a better way.”

“Not one so easy that people who don’t need it get it, but not so hard that people who need it suffer,” Morse said. “I’ve often thought I would have been better if I died in that car accident. All of this has made me an even more broken person.”

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