By Jason Laughlin Globe Staff,Updated September 7, 2024, 2:57 p.m.

Note: Paul Spooner personally advocated for this legislation, and his partner and MWCIL staff, Wini McGraw, testified at a hearing this year.

Joe Tringali, of Amherst, was an advocate for the disabled community in Massachusetts for more than 40 years and passionately fought for estate recovery reform. He died in December 2023.

For years, Massachusetts had one of the nation’s most aggressive approaches to seeking reimbursement for Medicaid expenses from the estates of people who received coverage.

Federal law requires states to seek reimbursement for some Medicaid coverage, but Massachusetts was among 23 states that went well beyond those requirements with policies that allowed the state to essentially bill the estates of the dead for much of the coverage they received in life.

The cost per estate could total hundreds of thousands of dollars, effectively draining the estates of many families.

That changed Friday when Governor Maura Healey signed legislation that significantly limits the practice of estate recovery in Massachusetts, a spokesperson for the administration said. The change curtails a policy that critics say particularly burdens people who are poorer but have managed to build some wealth in their lives. Surviving relatives have in some cases had to sell family homes in the wake of a loved one’s death to pay back Medicaid.

“It’s really prejudicial against elderly people and people with disabilities,” said Bill Henning, director of the Boston Center for Independent Living. “It’s a penalty for doing everything right, in a way.”

MassHealth did not comment on the policy change Friday but has said it is open to reducing estate recovery to align with federal requirements. Estate recovery affectsa small number of the millions who use MassHealth, about 3,440 estates between July 2016 and December 2018, according to state data.

The reform was part of sweeping legislation that included changes for long-term and nursing care facilities. It was among five major pieces of health care legislation that failed to get a vote by the end of the official legislative session at the beginning of August. It is now the second of those bills, along with a maternal health bill, that gained the governor’s signature after votes during informal legislative sessions.

“The bill is really going to save lives and improve the lives of so many,” said state Representative Thomas Stanley, a Democrat from Waltham and a sponsor of the legislation. “It’s really the most significant piece of legislation in the long-term care and assisted living space in over a quarter of a century.”

Estate recovery is a federally mandated practice requiring states to seek reimbursement from the 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. Massachusetts went beyond the federal requirements and sought to recover, with some exceptions, all Medicaid expenses, including preventative procedures and care for chronic conditions. Also vulnerable were participants in a MassHealth program called CommonHealth, which gave benefits equivalent to Medicaid to people who earned too much to qualify for public health coverage. CommonHealth members pay hundreds of dollarsa month to participate.

The new law exempts CommonHealth members from estate recovery and restricts the state to conducting estate recovery only for long-term care expenses, aligned with the federal minimum requirements.

Opponents of the policy described it as the equivalent of health insurers insisting they be reimbursed after the deaths of their customers. Poorer families are particularly burdened by estate recovery, policy analysts have said, and it robs them of the opportunity to build intergenerational wealth. The state’s disabled community has been particularly aggressive in fighting against estate recovery. One of the state’s leading activists, Joe Tringali, of Amherst, was in the midst of pushing for estate recovery reform when he died in December. He used a wheelchair since adolescence and relied on CommonHealth, and he was concerned about what estate recovery could cost his partner, Kathy Edgell, after his death.

“I can take a deep breath and not worry about what’s been hanging over me since Joe’s death in December,” Edgell said in an interview Friday. “It also means Joe worked so hard for this bill that his legacy continues.”

Estate recovery reform was initially pitched as a separate piece of legislation before being added to the long-term care bill near the end of the most recent legislative session. State Senator Jo Comerford had been one of the champions of reform and credited Tringali specifically after learning the governor had signed off on it.

“This win is for Joe Tringali, his family, and everyone who fought for decades to end now-past estate recovery practices,” Comerford, a Northampton Democrat, said Friday.

In a win for seniors and people with disabilities, Massachusetts curtails estate recovery practices Boston Globe