New Online Tool Helps Caregivers Navigate HIPAA When Supporting Loved Ones with Schizophrenia

New Online Tool Helps Caregivers Navigate HIPAA When Supporting Loved Ones with Schizophrenia

Developed by Caregiver Action Network with support from Bristol Myers Squibb.

FOR IMMEDIATE RELEASE

Sept. 25, 2025
Caregiver Action Network
Contact: Allison Borthwick
Email: aborthwick@caregiveraction.org
Phone: 202-780-9978

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WASHINGTON, DC – Caregiver Action Network (CAN) has released a new, free resource to support caregivers of individuals living with schizophrenia. Titled Navigating HIPAA as a Family Caregiver: Supporting a Loved One with Schizophrenia, this guide provides culturally-informed, easy-to-understand strategies to help family caregivers advocate for their loved ones while respecting privacy laws.

“Too often, family caregivers are shut out of care conversations because they don’t understand what HIPAA does—and doesn’t—allow,” said Marvell Adams Jr., CEO at Caregiver Action Network. “This tool breaks down those barriers and equips families with the knowledge they need.”

The tool, developed with support from Bristol Myers Squibb, includes:

  • A breakdown of caregiver rights under HIPAA
  • Common caregiver/healthcare provider scenarios and how to respond
  • Guidance on cultural and language considerations
  • Real stories from caregivers, including Black and immigrant families

Navigating HIPAA as a Family Caregiver: Supporting a Loved One with Schizophrenia was developed in response to an increasing demand from families who reported feeling excluded or confused during psychiatric care discussions. With sample scripts and expert-backed guidance, this tool helps caregivers open the door to better communication, improved outcomes, and stronger care teams.

The tool is available now at: www.caregiveraction.org/navigating-hipaa-schizophrenia/

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About Caregiver Action Network (CAN):

Caregiver Action Network (CAN) is the nation’s leading nonprofit dedicated to improving the quality of life for the more than 63 million family caregivers in America. From parents of children with complex health needs to spouses, friends, and adult children caring for loved ones with chronic conditions, disabilities, or Alzheimer’s, CAN supports the full spectrum of caregiving families. Through free education, peer support, and resources, CAN empowers family caregivers nationwide to provide care with strength, resilience, and hope.