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Parents Of Mentally Ill Adult Children Frustrated By Privacy Law

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But the provision within the Murphy bill that Torrey supports is controversial within the mental health community. Opponents say that weakening privacy protections would make patients less willing to seek treatment.

“In order for people to feel like they can say important things to a mental health provider, they need to know that it’s going to be kept confidential,” says Jennifer Mathis, director of programs at the Bazelon Center for Mental Health Law, a nonprofit an organization devoted to protecting the civil rights of people with mental illness.

Mathis says the problem isn’t the actual law -- there are already exceptions in HIPAA that allow providers to talk to family or caregivers when the patient is a danger to themselves or others. But those exceptions often are not used. Sometimes, Mathis says, providers may be “hiding behind HIPAA,” so that they don’t have to deal with families or because they are afraid of being sued.

Another problem could be simple misunderstanding. “There’s a tremendous amount of misinformation among the general public and the medical community about HIPAA,” says Carolyn Wolf, who directs the mental health practice at Abrams Fensterman, a law firm in New York. Doctors often don’t understand that there are situations where they would be permitted reveal information.

But even for doctors who thoroughly understand HIPAA, the safety exemption can be too narrow. “The vast majority of situations families find themselves in are not life and death,” she says. And parents of people with severe mental illness often need to work in partnership with medical staff to manage the care of their children.

For Scott’s father Mark, the exemptions to the privacy law are little comfort.

“It has been a very arduous journey, and it continues,” Mark says. “It’s had its moments of extreme anguish, a lot of tears shed, a lot of prayers prayed, a lot of just absolute puzzlement at life itself.”

For now, as a father and as a minister, he’s relying on faith.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Tue, Jun 03 2014

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