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2024-05-14 Spotlight: A Massachusetts disability rights warrior’s posthumous last battle against estate recovery

By Jason Laughlin
*Boston Globe, May 12, 2024

In more than four decades of fighting for the rights of people with disabilities, Joe Tringali never got angry. But he sure was persistent.

He called, emailed, called again, relentlessly, until he got legislators to listen.

Most recently, Tringali’s steady but forceful activism focused on a practice by MassHealth, the state’s Medicaid program, of claiming the assets of clients after they die to recoup the cost of long-term care, what’s known as estate recovery. The practice robs people with significant disabilities of the power to accumulate savings and other assets they can leave to their families, Tringali argued.

He had been instrumental in shaping legislation now under consideration that could significantly restrict the state’s ability to recover those assets.

Paralyzed as a teenager after diving into the shallow end of a swimming pool, Tringali spent his career working in advocacy, much of it for the Stavros Center for Independent Living in Amherst. But he didn’t live to see the outcome of his recent lobbying. He died in December at age 71.

Now, some of his estate will likely be subject to the very policy he fought. The possibility worries his partner of more than 20 years, Kathy Edgell.

“It would definitely affect my future ability to support myself,” she said.

The cost of Tringali’s care to MassHealth likely was in the millions, Edgell said.

In addition to providing health insurance to low-income and other eligible populations, MassHealth supports non-medical long-term care services, including personal assistance necessary for people with significant disabilities to live in their own homes. Medicaid programs nationwide are required to seek reimbursement from estates of the deceased who received long-term care from age 55 or older, including those who lived at home, or people of any age who permanently lived in a long-term care or medical facility.

The policy affects a small number of the millions who use MassHealth; the state collected from 3,440 estates between July 2016 and December 2018, for example. But few states pursue assets as aggressively as Massachusetts. It puts no limits on how much it can recoup, and for some the bill can total hundreds of thousands of dollars.

Estate recovery holds unique risks for people with significant disabilities, said Katherine Howitt, director of the Massachusetts Medicaid Policy Institute, because they have little choice but to participate in some form of MassHealth.

“In many ways estate recovery penalizes people with disabilities for seeking the services that they need,” Howitt said.

Tringali, a quadriplegic, needed assistance with daily tasks such as bathing, cooking, and dressing. But private insurance rarely covers that kind of non-medical home care. Home assistance is too expensive to pay out of pocket, and relying on a relative or loved one could deprive that person of their own living.

MassHealth allows people such as Tringali who earn too much to qualify for Medicaid to essentially buy equivalent coverage through a program called CommonHealth. While they can pay hundreds a month for the coverage, CommonHealth enrollees are still subject to estate recovery. When he died, Tringali’s premium was about $200 a month, Edgell said.

“Imagine paying a premium for insurance and having the insurance company take your house when you die?” Tringali wrote in a 2023 letter to the Daily Hampshire Gazette about what he called a “horrible, mean-spirited Medicaid regulation.”

Despite being treated for cancer in recent years, Tringali, and his lifelong friend and fellow advocate, Charles Carr, successfully pushed for language in the legislation, now before the Senate Ways and Means Committee, which excludes the estates of CommonHealth participants from asset recovery efforts.

State officials are open to limiting recovery to the federal government’s minimum requirements, said Mike Levine, assistant secretary for MassHealth.

“We welcome input on how to further promote transparency and enable intergenerational wealth transfer for families in an equitable manner,” he said.

MassHealth officials noted a carveout contained in the legislation would benefit only wealthier people.

Tringali and Carr met as roommates at Mass General Hospital 56 years ago, both paralyzed in nearly identical accidents, two teenagers whose young bodies were suddenly, catastrophically altered.

“We were just devastated,” Carr remembered. “We didn’t talk about it because it was too painful.”

Instead, he said, they watched TV and exchanged jokes.

As older men, Tringali and Carr worried their physical limitations were a hardship to their partners.

“We talked about who was a bigger burden, me and him,” Carr said. “We got really deep.”
Edgell and Carr’s wife would dismiss that talk.

“We loved each other and that was enough,” said Edgell.

Tringali wasn’t immediately drawn to activism, those close to him said. Mostly, he wanted to ensure his disability never kept him from the life he wanted. As a student at Boston University, he fought successfully for a wheelchair-accessible dormitory.

He centered his work in Western Massachusetts, where accessible transportation and housing options for people with disabilities are far more limited than in the Boston area. He embraced an inclusive, broad definition of disability.

“He was really open-minded,” said Brianna Zimmerman, who worked with Tringali at Stavros and has ADHD and mental health challenges. “He never made me feel like I was a fraud in the movement.”

In Amherst, he fought to make the town’s sidewalks accessible to wheelchairs, recalled Angelina Ramírez, Stavros’ executive director. He grew a Stavros program to build wheelchair ramps into an initiative that made 1,100 homes in Western Massachusetts accessible.

Tringali ultimately became a leading advocate in Massachusetts’ independent living movement.

“He’s one of those people who was just unstoppable in his commitment to right the wrongs of state policy,” said state Senator Joanne Comerford, a Democrat of Northampton and sponsor of the bill to change recovery rules. “Joe held us accountable.”

He met his partner, Edgell, following a tragedy. She was close friends with Tringali’s previous partner, Susan Gipperich, and when she died of cancer in 2002, Edgell and he consoled each other over games of cribbage. Over six months, the friendship turned romantic.

“He was funny, he was incredibly intelligent,” Edgell said, while sitting on her back porch overlooking woodlands of slender trees.

It was one of Tringali’s favorite spots, she said, where he would watch birds on sunny days. Last winter, he marveled over a family of bears that had settled nearby. A son of Sicilian immigrants, born in Boston’s West End and raised in Medford, Tringali was easygoing, and loved the Patriots, shots of Crown Royal with friends, and fishing. Edgell noted he lived 36 years longer than doctors had predicted after his accident.

Tringali’s passion for reforming MassHealth’s practices, as with his initial foray into advocacy, stemmed from personal concerns. Tringali and Carr were both shocked, Carr recalled, about after learning a disabled friend’s family received a bill for $300,000 from the state after his death 10 years ago.

Estate recovery can only claim assets reported in probate, said Karen Jackson, of Holyoke, an elder law attorney who worked with Tringali and Edgell to protect their assets. Their home is securely in Edgell’s name, Jackson said. The couple hoped other assets would be protected and be left to Edgell or to the daughter of Tringali’s late partner. However, they are unsure what still might be vulnerable. She expects to at least lose the value of a wheelchair-accessible van likely worth about $40,000, and some savings.

“He worked very hard. I worked very hard, and he didn’t know what was going to be left for me,” Edgell said.

By November, Tringali was cancer-free, Edgell said. In December, a urinary tract infection sent him to the hospital. He died there in what a medical examiner ruled an accidental death, a result of complications from Tringali’s quadriplegia.

“Once I’m dirt napping, after 35 years of working, the state will try to recapture my home, savings, and retirement,” Tringali wrote last year about estate recovery. “Hopefully I’ll be able to keep my name and reputation because that’s all my family will get.”

Tringali rallied friends and colleagues in Western Massachusetts and at independent living centers statewide to reform estate recovery. If the legislation that he and others pushed for passes, it would be “a crowning achievement in Joe’s legacy,” said Carr. “It’ll shine a light on Joe’s incredible tenacity, his insight, how much he cared about people’s lives,” he said.

Editor’s note:  Joe Tringali  was a 45-year member of the Amherst-based Stavros Center for Independent Living. He was also an active participant with Dignity Alliance Massachusetts. He died on December 27, 2023 at the age of 71.