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 powerless during psychiatric emergencies. The platform emerges from growing concerns that existing systems fail to protect vulnerable individuals and their families during mental health crises.
"Families are being shut out during the most critical moments of their loved ones' lives," said Leon Shelmire Jr., founder of Families Rights Matter2. "HIPAA was never designed for today's mental-health crisis reality. Our platform brings common-sense solutions that protect patients, empower families, and strengthen public safety."
The comprehensive reform platform addresses ten key areas where current systems fall short. First, it 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 such communication.
Second, the platform proposes national HIPAA training to end provider confusion, as clinicians often misunderstand HIPAA and over-restrict communication. Third, it seeks 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. Fourth, hospitals would be required to provide essential safety updates to families during psychiatric emergencies.
Fifth, the plan establishes a duty for clinicians to consider family input, requiring them to document and consider family reports about danger, history, medication, and behavioral patterns. Sixth, it calls for a clear national definition of "incapacity" to replace the current inconsistent interpretations. Seventh, HIPAA would be expanded to cover modern crisis systems including 988 crisis lines, mobile crisis teams, and mental-health apps that often fall outside current regulations.
Eighth, the platform mandates state intervention after repeated crisis holds, requiring the state to intervene with treatment, stabilization, and long-term support when individuals cycle through multiple holds. Ninth, it requires every police department to operate dedicated mental-health crisis units so trained specialists can handle psychiatric emergencies while officers focus on crime. Tenth, all jails and prisons would be required to operate mental-health treatment units to stabilize individuals and ensure continuity of care.
The advocacy group is calling for widespread support for these reforms, emphasizing their life-saving potential. "These reforms are not about politics — they are about saving lives," Shelmire said. "Families deserve to have input, to be included in treatment planning, and to know their loved ones are safe. Communities deserve a crisis system that works. And people in crisis deserve treatment, not abandonment."
Families Rights Matter2 is urging lawmakers, mental-health leaders, and community organizations to support the platform and join the movement to modernize America's crisis-response system. The group has launched a petition at https://www.change.org/p/reform-hipaa-for-families-rights-in-mental-health-emergencies to build public support for these critical reforms.
