Certain records from the tens of thousands of people with mental, intellectual and developmental disabilities who have lived at Massachusetts institutions could become public under a proposal included in Gov. Maura Healey’s spending bill for the end of this fiscal year.
This change is one that advocates have been pushing for, spurred by the remaining family members of people who lived in these state institutions — and in some cases, died there. David Scott told GBH News last year that he’s been trying to obtain records from his brother John, who spent most of his short life in The Walter E. Fernald State School in Waltham before dying in 1973 at age 17. He suspects his brother was mistreated there.
“That’s my brother. They have no right in my eyes to hold his records from his family,’’ he said in 2024.
The language in Healey’s bill would make state institutional records public after 75 years. Additionally, family members or academic researchers would be able to access records 50 years after a patient’s death.
“The goal of these provisions is to make institutional records easier for loved ones and historians to access while respecting patient privacy concerns,” a press release tied to the announcement of Healey’s bill said.
According to the statement, the language in the bill aligns with recommendations from the Massachusetts Special Commission on State Institutions.
Earlier this year, the commission released a report that found records have been held by private institutions that shouldn’t have them, and these records have sometimes been left exposed and sold online. Meanwhile, those who seek records often face “insurmountable legal, procedural, and financial barriers to access.”
It also underscored the harm that has been caused by the lack of transparency.
“By hiding a story of mass human rights abuses the Commonwealth is preventing society from engaging in a full reckoning with the atrocities that have been inflicted on disabled people throughout our history,” the report read.
Alex Green, who serves as vice chair of the commission, applauded Healey’s proposals.
“I hope that it will receive widespread approval in the Legislature and support,” Green said. “And I think it’s an encouraging sign that perhaps we’re moving towards the chief recommendation of the commission, which is a formal apology for the past abuses of institutionalization and how they impact disabled people today.”
Green said many other states make records public after 75 years, which seems to balance the need for transparency with concerns over privacy due to abuse that the records often describe.
According to the Harvard Law School Project on Disability, at one time Massachusetts was home to more than two dozen large-scale institutions. Green said it’s still the only state in New England with these kinds of large institutions in place.
He believes that the history of hiding the reality of what went on in these facilities has impeded action on closing them down. He said many of the details in records he’s reviewed are “exceedingly disturbing.”
“I think that we should be prepared for the fact that what’s in those records and what is revealed is going to cause public discomfort,” Green said. “And that that discomfort is going to demand action of us in the present day in a way that shows that we are not the same kinds of people who led this persecution of disabled people in the past.”
Legislators will consider this proposal as part of the governor’s spending bill. Deliberations on these types of bills typically continue into the fall.
