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Parents Of Mentally Ill Adult Children Frustrated By Privacy Law

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What little information Mark and his wife get about Scott’s treatment comes from their insurance company, since Scott is still on their plan. Mark still has scars on his head from a recent altercation with Scott.

Mark is a gentle and deliberate man with round glasses and a rosy complexion. His tidy suburban home is filled with photos of his children and piles of books about faith. But, he wonders, “why am I as the one who is a primary care giver, protector, provider, whatever-- I’ve watched this kid grow up, and yet I’m out of the circle? I can’t be there to be of help.”

“I hear this all the time from families who are very frustrated,” says Dr. E Fuller Torrey, a psychiatrist and founder of the Treatment Advocacy Center, a nonprofit that works to tighten treatment laws for mental illness. He says the problem is that HIPAA wasn’t written with mental illness in mind.

“When someone has cancer, you can make the assumption that their brain is working normally so that they can make an informed decision as to whether or not they want their loved ones to know exactly what the details of the cancer is,” Torrey says. “You can’t make that assumption about people with schizophrenia or bipolar disorder.”

Often, he says, sharing information with the family can be crucial to a patient’s care, helping to ensure that they stay with a treatment plan and prevent readmission to the hospital. This is particularly important for mothers and fathers, he continues, who “still continue to provide the primary care for many, many of the people who are severely mentally ill.” Torrey supports a bill in Congress, sponsored by Rep. Tim Murphy (R-Penn.), that would alter HIPAA to make it easier for families to access information for patients with severe illness.

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.

Tue, Jun 03 2014

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