Massachusetts lawmakers have sent a bill to the governor that would make it easier for family members to obtain records of their disabled loved ones who lived in institutional housing. Gov. Maura Healey is expected to sign it into law.
For years, controversy swirled around the now-closed Fernald School in Waltham, an institution with a history of human rights violations of abuse, neglect and reportedly allowing researchers to conduct experiments on residents. Yet privacy protections in state law mean the only way family members can gain access to their loved one’s records from the Fernald and similar facilities is through a court order or a governor’s decree.
With the governor’s signature, the new legislation would make records available to the public 75 years after they were created. Additionally, relatives and researchers could request records 50 years after a person’s death, with the stipulation that someone could counter that request with a reason to keep those records closed longer. If those records are released, any identifying information of living individuals would be redacted.
State Sen. Michael Barrett, who spearheaded the legislation in the Senate, said the goal of the bill is to serve families who have long been left in the dark while balancing privacy concerns.
“I’m feeling very good, that the House and the Senate made sure that this good, kind, sensible idea did not get lost,” he said. “This should give us more confidence that government works once in a while. It certainly is working in this case.”
Barrett told GBH News he initially got involved in the issue because he represents Waltham and Lexington, home of the Fernald School and Metropolitan Hospital that housed disabled residents.
He later learned he has a personal connection.
Two years ago, Barrett discovered that his great-grandmother was housed in Northampton State Hospital for 25 years. Barrett said his family never knew about it.
“She is one of these folks who whose family records we would now like to know more about,” he said.
State Rep. Sean Garballey of Arlington and Medford signed on as House sponsor of the bill. Healey is expected to sign the measure into law.
Garballey said he was motivated by seeing cemetery headstones with no names on them, only numbers and religious affiliations.
“I think this is a huge victory for individuals of intellectual disabilities and the ability to be able to share their stories ... and for members of the public to become more informed about the history of what occurred at these institutions,” he said.
John Scott, who was a resident at the Fernald School from 1955-1973, died shortly before his 18th birthday, and his body was placed in an unnamed grave.
David Scott long wanted to learn about his brother’s life. He received some records last year, but he felt the 80 to 100 pages he received were incomplete, given the length of time John lived at the Fernald School.
Scott he said he is pleased that other families will have access to medical records, but it took too long for the governor to step in. Healey included the provision in a spending bill she filed in August, and that bill quickly passed final votes in the House and Senate on Wednesday, sending it to Healey’s desk.
“I am glad she’s doing it, but it’s too little, too late,” Scott said, adding that he’s concerned about records being damaged before families could get answers.
A report released by the Massachusetts Special Commission on State Institutions this spring found that the state mishandled decades of public records relating to the residents of institutions like the Fernald School.
Alex Green, vice-chair of the commission and a lecturer at the Harvard Kennedy School, is pleased that the bill might finally become law.
“This is the very, very first step toward the state understanding the extent of a long overlooked and significant tragedy on the most personal basis of it as a human rights tragedy,” Green said.
The outcome for families, Green said, is enormous.
“I think it can’t be overstated what the ramifications of that are big and small. People will be able to find out information about questions that they have regarding whether certain kinds of mental illness seem to appear to run in their families. So, there’s direct medical knowledge that you can gain out of this,” Green said.
Barrett said passing the bill is not the final step. He said the state owes families a formal apology for conducting experiments on disabled people and other mistreatment at these institutions.
