His primary message? The country needs to ease patient privacy laws to help people with severe mental illness and their families.

“HIPAA prevented me from accessing the information I needed to keep my son safe and help him towards recovery,” said Deeds. “Even though I was the one who cared for him, housed him, fed him . . . I was not privy to any information that could clarify for me his behaviors. I did not know his diagnosis, prescription changes and necessary follow-up care.”

Among many important provisions, the reintroduced “Helping Families in Mental Health Crisis Act” would include adjustments to the HIPAA Privacy Rule so caretakers of the severely mentally ill can access information in times of crisis.

“I was in the dark as I tried to advocate for him in the best way I could with the best information I had,” Deeds continued. “We have to do better. Not for me. Not for the countless other families who have already buried their loved ones. But for those who still struggle with mental illness and the families that struggle to help them.”

“This bill makes important changes to HIPAA that would allow adult children to be cared for by the parents or family members that already care for them,” Deeds said. Read his entire testimony.

Representative Matsui (D-CA) has also introduced legislation “Including Families in Mental Health Recovery Act” that would provide guidance and educate providers, patients and families about sharing information under HIPAA. Members of the bipartisan panel expressed support for both pieces of legislation.