After years of searching for answers, David Scott finally has state records regarding his late brother's experience living at an institution for people with developmental disabilities.
It was a bittersweet moment. At the Department of Developmental Services, he took his time poring over the more than 50 pages of annual health screenings and educational analyses about his older brother John, who lived at the Walter E. Fernald State School in Waltham from shortly after his birth until his sudden death as a teenager in 1973.
“It’s almost like butterflies in your stomach,” Scott said. “It was only like three days ago, Monday, that I found out [about getting the paperwork], so it still really hasn’t settled in 100% yet.”
Scott said he began the process of uncovering his brother's records after he retired five years ago. He reached out to Gov. Maura Healey this spring to request that she sign an executive order to open his brother's records. Two weeks later, the department made them available.
“Ever since we met with her, everything transpired so quick after that,” Scott said. “My thought is that she must have had something to do with it.”
Scott’s experience represents just one of a handful of cases that the federal government has used in conducting civil rights investigations involving the Department of Developmental Services, which allegedly committed patient privacy violations at the shuttered Fernald school.
The institution is currently filled with loose papers that contain personal and sensitive information, making them easily accessible to anyone passing by. Other records were spread across different state agencies and medical libraries. Yet families have struggled to gain access to these records due to a subsection of the state’s public records law that prevents sharing of information pertaining to medical files.
“The way that they had left those records scattered, you know, violating the HIPPA — it’s kind of a slap in the face to say ‘no’ to a family and say ‘Now we’re trying to protect the records,” Scott said.
The material Scott obtained Thursday included outdated and offensive terminology to refer to his brother, including calling him “untidy” and “immature.” The pages also offered insight into how little faith staff had in John’s potential outside of the state school, noting that he cared more about socializing than academics, and how he would not be able to succeed in certain careers.
The Fernald school closed in 2014 after a sharp decline of residents, along with increasing investigations surrounding treatment practices that have been deemed exploitative and abusive.
Alex Green, a Harvard researcher and disabilities expert, says the ongoing battle for Scott to receive his brother’s records reaffirms that the mistreatment and abuse of disabled people continues to be an “untold national scandal.”
“I’ve heard everything from ... ‘We can’t give you the records because it’s not legal to do so, all the way’ to ‘We don’t know if we can find them or we’re not the agency that has them,” Green said. “State officials use legal language that is impenetrable [and] they ask for people to go through processes that can’t be gone through without lawyers.”
Green wants all families across the commonwealth to receive the same access to family records like Scott.
But Scott knows that even after this long effort to gain access to his brother’s state records, the very nature of these one-sided documents means he doesn’t have the full picture. He still has questions about the level of mistreatment his brother endured — something he’s only captured a glimpse of through his own research.
“I’ve heard stories where … the teacher had to send him out of class everyday because his colostomy bag was overflowing and he smelled so bad,” Scott said, referring to a video interview he watched with one of John’s teachers. “And she said the level of abuse that he went through was just terrible.”
