Families Rights Matter2, a national advocacy movement, has announced a 10-Point Policy Platform designed to address critical failures in America's mental health crisis response system and reform HIPAA regulations that currently leave families excluded during emergencies. The platform responds to what founder Leon Shelmire Jr. describes as a system where "families are being shut out during the most critical moments of their loved ones' lives" due to outdated privacy laws and inadequate crisis infrastructure.
The first five points of the platform focus specifically on reforming HIPAA (Health Insurance Portability and Accountability Act) to require rather than merely permit family involvement during mental health crises. Currently, HIPAA allows providers to share information with families but does not mandate such communication, leading to situations where clinicians often misunderstand the law and over-restrict family access. The proposed reforms would require providers to notify and communicate with families when a loved one is in crisis, at risk, or unable to make safe decisions. Additionally, the platform calls for standardized national HIPAA training to eliminate provider confusion about when family involvement is permitted and required.
A particularly significant proposed change addresses how HIPAA treats adults during psychiatric crises. The law currently treats all adults as capable decision-makers, even during psychosis or suicidal episodes. The platform advocates for creating an emergency exception allowing temporary family involvement when a person is clearly not in their right mind. This would be supported by establishing a clear national definition of "incapacity" during mental health crises, replacing the current system where interpretation varies by provider and institution. The reforms would also require hospitals to provide essential safety updates to families during psychiatric emergencies and mandate that clinicians document and consider family reports about danger, history, medication, and behavioral patterns.
The platform extends beyond HIPAA reform to address systemic gaps in crisis response infrastructure. It proposes expanding HIPAA to cover modern crisis systems including 988 crisis lines, mobile crisis teams, and mental health apps that often fall outside current privacy regulations. The plan also calls for mandatory state intervention after repeated crisis holds, requiring the state to provide treatment, stabilization, and long-term support when individuals cycle through emergency holds without receiving adequate care.
Law enforcement and correctional system reforms form another critical component of the platform. Recognizing that police are often first responders to mental health crises despite lacking specialized training, the platform would require every police department to operate a dedicated mental health crisis unit. Similarly, the plan would mandate mental health treatment units in all jails and prisons to stabilize individuals who often end up in correctional facilities when hospitals are full, ensuring continuity of care and protecting community safety.
The importance of these reforms lies in their potential to transform a system that currently leaves vulnerable individuals without adequate support while excluding families who could provide critical information and care coordination. As mental health crises continue to affect millions of Americans annually, the gaps in current response systems have significant implications for public safety, healthcare outcomes, and family wellbeing. The platform represents a comprehensive approach to addressing these interconnected challenges through both regulatory reform and infrastructure development. Families Rights Matter2 is calling on lawmakers, mental health leaders, and community organizations to support the platform, which can be viewed through their online petition advocating for HIPAA reform in mental health emergencies.
