Families Rights Matter2, a national movement advocating for mental health crisis reform, announced a 10-Point Policy Platform designed to address systemic failures in how mental health emergencies are handled in the United States. The platform specifically targets perceived deficiencies in the Health Insurance Portability and Accountability Act (HIPAA) and broader crisis response infrastructure that the group argues leaves families powerless and communities at risk. "Families are being shut out during the most critical moments of their loved ones' lives," said Leon Shelmire Jr., founder of Families Rights Matter2. He stated that HIPAA was not designed for today's mental health crisis reality and that the platform offers common-sense solutions.
The proposed reforms center on mandatory family communication during crises, arguing that while HIPAA currently allows providers to share information with families, it does not require it. The first point of the platform would mandate that providers notify and communicate with families when a loved one is in crisis, at risk, or unable to make safe decisions. Several points address confusion and inconsistency in applying existing rules. The platform calls for national HIPAA training to end provider confusion, as clinicians often misunderstand the law and over-restrict communication. It also seeks to update consent rules for adults in psychiatric crisis, creating an emergency exception for temporary family involvement when a person is clearly incapacitated, such as during psychosis or a suicidal crisis. Furthermore, it proposes establishing a clear national definition of "incapacity," which HIPAA currently leaves up to individual interpretation, leading to inconsistent outcomes.
The plan extends beyond HIPAA to modernize the entire crisis response system. It advocates for expanding HIPAA to cover modern crisis systems like 988 crisis lines, mobile crisis teams, and mental health apps, which often fall outside current privacy and communication rules. A significant proposal is the requirement for mental health crisis response units in every police department, ensuring trained specialists, rather than general duty officers, handle psychiatric emergencies. Another point mandates mental health treatment units in all jails and prisons to stabilize individuals and ensure continuity of care when hospitals are full.
The platform also includes measures to ensure families are heard and systems are accountable. It proposes a duty for clinicians to consider and document family input about danger, history, medication, and behavioral patterns. It calls for hospitals to provide essential safety updates to families during psychiatric emergencies. Additionally, it seeks mandatory state intervention with treatment and long-term support after a defined number of crisis holds to prevent individuals from cycling through the system without receiving adequate care. "These reforms are not about politics — they are about saving lives," Shelmire said. The group is calling for support from lawmakers, mental health leaders, and community organizations. The movement has mobilized public support through avenues like a petition for HIPAA reform. The comprehensive nature of the 10-point plan highlights the interconnected challenges families face during mental health crises and proposes a coordinated national approach to reform.
