Families Rights Matter2 Proposes 10-Point Plan to Reform Mental Health Crisis Response and HIPAA Regulations

Families Rights Matter2, a national movement advocating for mental health crisis reform, announced a 10-Point Policy Platform designed to close dangerous gaps in HIPAA and modernize America's mental health crisis response system. The platform addresses failures that leave families powerless, patients unprotected, and communities at risk. Leon Shelmire Jr., founder of Families Rights Matter2, stated that families are being shut out during critical moments of their loved ones' lives and that HIPAA was never designed for today's mental health crisis reality.

The first point of the reform platform calls for mandatory family communication during mental health crises, requiring providers to notify and communicate with families when a loved one is in crisis, at risk, or unable to make safe decisions. This addresses the current HIPAA provision that allows but does not require information sharing with families. The second point advocates for national HIPAA training to end provider confusion, as clinicians often misunderstand HIPAA and over-restrict communication. This reform would require standardized national training so providers know exactly when family involvement is permitted and required.

The third point proposes updated consent rules for adults in psychiatric crisis, creating an emergency exception allowing temporary family involvement when a person is clearly not in their right mind. Currently, HIPAA treats all adults as capable decision-makers, even during psychosis or suicidal crisis. The fourth point calls for required safety updates to families, as families are often denied basic information such as whether their loved one is safe or admitted. This reform would require hospitals to provide essential safety updates during psychiatric emergencies.

The fifth point establishes a duty to consider family input, requiring clinicians to document and consider family reports about danger, history, medication, and behavioral patterns. Currently, families can give information, but providers are not required to listen or document it. The sixth point seeks a clear national definition of "incapacity," as HIPAA leaves this term up to individual interpretation, creating inconsistent outcomes. This reform would establish a national standard for determining incapacity during mental health crises.

The seventh point expands HIPAA to cover modern crisis systems, extending privacy and communication rules to all crisis-response systems including 988 crisis lines, mobile crisis teams, and mental health apps that often fall outside HIPAA. The eighth point calls for mandatory state intervention after repeated crisis holds, requiring the state to intervene with treatment, stabilization, and long-term support after a defined number of holds, addressing situations where families are left helpless when loved ones cycle through crisis holds without long-term care.

The ninth point advocates for mental health crisis response units in every police department, requiring every police department to operate a dedicated mental health crisis unit so officers can focus on crime while trained specialists handle psychiatric emergencies. This addresses the reality that police are not mental health professionals, yet they are often the first responders. The tenth point calls for mental health treatment units in all jails and prisons, requiring every jail and prison to operate a mental health treatment unit to stabilize individuals, ensure continuity of care, and protect community safety. This reform addresses situations where people in crisis often end up in jails unequipped to treat them, especially when hospitals are full.

Shelmire emphasized that these reforms are about saving lives rather than politics, stating that families deserve to have input, be included in treatment planning, and know their loved ones are safe. The movement is calling on lawmakers, mental health leaders, and community organizations to support the platform and join the movement to modernize America's crisis-response system. Families Rights Matter2 has launched a petition at https://www.change.org/p/reform-hipaa-for-families-rights-in-mental-health-emergencies to gather public support for these reforms.