Frustrated family members and advocates are pushing for legal reforms in New York and other states to allow the release of mental health records of deceased ancestors. These records, often sealed for decades, could provide crucial insights into family medical histories and past institutional abuses.
The Struggle for Access
Debby Hannigan, whose great grandaunt Breta Meria Conole spent over 20 years in a state psychiatric hospital, tried for years to obtain Conole's medical records. Despite support from her daughter's therapist, New York state denied her requests. Similarly, Doug Clarke of Alfred, New York, failed to access his great-grandfather's records, which he believed could explain patterns of depression and bipolar disorder in his family.
Historical Context of State Institutions
In the 1800s, the U.S. saw a boom in state asylums, with every state having at least one by 1890. Reasons for admission ranged from medical conditions to social issues like laziness or desertion. Over time, these facilities became notorious for overcrowding and neglect, and later for discredited treatments such as lobotomies. However, staff often kept detailed notes, photographs, and other materials, creating a rich trove of historical data.
Preservation and Challenges
Dr. Laurence Guttmacher, former clinical director of Rochester Psychiatric Center, noted that while many records were damaged or lost, significant information remains. He received frequent requests from family members seeking access, but state policies often prevented disclosure.
Legal Barriers
The federal Health Insurance Portability and Accountability Act (HIPAA) protects health information for 50 years after death. Some states, like Ohio and Maine, allow access after that period, but others, including New York, keep records sealed indefinitely. New York's Office of Mental Health states that records can only be released to patients, immediate family, or medical professionals with justification, and to historians who agree to anonymize data.
Reform Efforts
Massachusetts passed a law in 2025 making records public after 75 years or 50 years post-death, following a commission report on historical abuses. In New York, Senator Pat Fahy introduced a bill to designate records of patients deceased for 50 years or more as historic records, no longer subject to privacy protections. Fahy cited the troubled history of facilities like Willowbrook State School, where children with disabilities lived in deplorable conditions.
Alternative Routes for Families
Historians suggest families use online services like Ancestry.com to access census data, veterans' pension files, and old newspapers, which often contain details about institutionalized ancestors. Ryan Thibodeau, a researcher at St. John Fisher University, noted that at the peak of institutionalization in the 1950s, over 500,000 people were in state hospitals, meaning many descendants could benefit from access.
Dr. Christine Moutier of the American Foundation for Suicide Prevention emphasized the value of such records: just as knowing a grandfather died of a heart attack informs vigilance, mental health records can help families understand risks. The push for change continues, with advocates arguing that learning from history is key to improving future care.
