After an extensive search, David Scott has finally obtained state records concerning his late brother’s time at an institution catering to individuals with developmental disabilities.
This moment was both poignant and bitter for Scott as he meticulously reviewed over 50 pages of annual health assessments and educational evaluations documenting the life of his older brother, John. John had been a resident of the institution from early childhood until his abrupt passing during his teenage years in 1973.
Reflecting on this experience, Scott likened the feeling to butterflies fluttering in his stomach, emphasizing that the realization of acquiring the paperwork had not completely sunk in even three days after the discovery.
The journey to uncover his brother’s records commenced five years ago after Scott’s retirement. He had made a request to the Department of Developmental Services for access to his brother’s records, and within a mere two weeks of meeting with the department, the documents were made available to him.
Scott’s case is just one of the few instances where federal intervention has been necessary to address alleged breaches of patient confidentiality at the now-closed Fernald school, operated by the Department of Developmental Services.
The scattered state of the institution’s records, containing personal and confidential details, posed a significant privacy risk. Despite this, families faced obstacles in accessing these records due to regulations prohibiting the sharing of medical information.
The documents Scott obtained contained outdated and derogatory language describing his brother as “untidy” and “immature.” They also revealed staff skepticism about John’s abilities beyond the institution, highlighting his preference for social interaction over academics and doubts about his potential success in certain professions.
The closure of the Fernald school in 2014 was prompted by a decline in residents and increased scrutiny of its treatment practices.
Alex Green, a disabilities expert from Harvard, emphasized the ongoing struggle faced by individuals like Scott in obtaining family records, underscoring the pervasive mistreatment and neglect of disabled individuals as a national issue.
Green advocated for equal access to family records for all residents of the commonwealth, echoing Scott’s persistent quest for transparency.
Despite the efforts to access his brother’s state records, Scott acknowledges the inherent limitations of these one-sided documents, leaving unanswered questions about the extent of his brother’s mistreatment. Stories of neglect, such as incidents where John’s teacher had to remove him from class due to overflowing colostomy bags, paint a grim picture of the abuse he endured.