Families Rights Matter2, a national advocacy movement, announced a 10-Point Policy Platform designed to address critical failures in America's mental health crisis response system and modernize HIPAA regulations. The platform responds to what the organization describes as systemic problems that leave families powerless during psychiatric emergencies while putting patients and communities at risk.
Founder Leon Shelmire Jr. stated that current HIPAA regulations were not designed for today's mental health crisis reality, noting that families are often excluded during the most critical moments of their loved ones' lives. The proposed reforms aim to bring common-sense solutions that balance patient privacy with family involvement and community safety.
The platform's first point addresses mandatory family communication during mental health crises. While HIPAA currently allows providers to share information with families, it does not require such communication. The reform would mandate that providers notify and communicate with families when a loved one is in crisis, at risk, or unable to make safe decisions.
To address widespread confusion among healthcare providers, the second point calls for national HIPAA training to ensure clinicians understand exactly when family involvement is permitted and required. This standardized training would replace the current system where providers often over-restrict communication due to misunderstanding HIPAA regulations.
The third reform proposes updated consent rules for adults in psychiatric crisis. Currently, HIPAA treats all adults as capable decision-makers, even during psychosis or suicidal crises. The platform advocates for an emergency exception allowing temporary family involvement when a person is clearly not in their right mind.
Point four addresses the frequent denial of basic safety information to families. The reform would require hospitals to provide essential safety updates during psychiatric emergencies, ensuring families know whether their loved one is safe or admitted to care.
The fifth point establishes a duty for clinicians to consider family input. While families can currently give information to providers, there is no requirement for clinicians to listen or document it. The reform would mandate that providers document and consider family reports about danger, history, medication, and behavioral patterns.
To create consistency across jurisdictions, point six calls for a clear national definition of "incapacity." HIPAA currently leaves this determination up to individual interpretation, leading to inconsistent outcomes for patients in crisis.
The seventh reform expands HIPAA coverage to modern crisis systems. Currently, 988 crisis lines, mobile crisis teams, and mental health apps often fall outside HIPAA regulations. The platform proposes extending privacy and communication rules to all crisis-response systems to ensure comprehensive protection.
Point eight addresses the cycle of repeated crisis holds without long-term care. The reform would require state intervention after a defined number of holds, mandating treatment, stabilization, and long-term support for individuals who repeatedly experience psychiatric crises.
The ninth point focuses on police response to mental health emergencies. Recognizing that police officers are not mental health professionals yet often serve as first responders, the platform calls for every police department to operate a dedicated mental health crisis unit. This would allow officers to focus on crime while trained specialists handle psychiatric emergencies.
The final reform addresses the intersection of mental health and the criminal justice system. Point ten would require every jail and prison to operate a mental health treatment unit to stabilize individuals, ensure continuity of care, and protect community safety, particularly when hospitals are at capacity.
Shelmire emphasized that these reforms are about saving lives rather than politics, stating that families deserve input, inclusion in treatment planning, and assurance of their loved ones' safety. The organization 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. Those interested in supporting the initiative can learn more through the organization's petition for HIPAA reform.
