HIPAA (Health Insurance Portability and Accountability Act) was designed to protect patient privacy, but in contexts of mental health care, especially with limited access, it can unintentionally cause harm:
Caregiver Isolation
- HIPAA restricts providers from sharing health information without patient consent—even with close family or caregivers—unless there's a serious and imminent threat.
- This means family members supporting individuals with serious mental health conditions may be left in the dark about diagnoses, medications, or treatment plans, even when they are essential to daily care.
- In communities with limited access to formal care, families often serve as the primary support system, so barriers to communication reduce the continuity and effectiveness of care.
“They won’t even tell you if a missing person is a patient in a mental health unit.”
– Lisa M.
Disparities Exacerbated by Overburdened Systems
- In low-resource settings, providers may have less time to navigate HIPAA intricacies or to secure the necessary consent for family involvement.
- Patients in marginalized groups may have lower health literacy or mistrust of the system, making them less likely to fill out the necessary paperwork to allow communication, often unintentionally cutting out essential caregivers.
Lack of Advocacy and Navigation Support
- Underserved populations often lack access to patient advocates who could help navigate both HIPAA and the mental health system. Without help, navigating consent processes becomes more difficult.
Disparities in access to mental health care—driven by geography, socioeconomic status, race, and culture—are deepened when HIPAA protections, though well-intended, isolate caregivers and complicate coordination of care.
For marginalized groups already struggling to access culturally appropriate services, the inability to engage family or community in care planning further widens the gap in outcomes.
Hear from Elizabeth V, who learned of her son's situation only after he was committed: