Tue, Jun 03 2014
Among the many questions brought up by the horrifying killings in Isla Vista, Calif., last month were what could have parents have done to prevent the tragedy, if anything? And what did they actually know about their son’s mental illness?
Some parents of adult children with mental illnesses fear that their child will go untreated, suffer, or, at worst, become violent. And often, as the people who care the most about them, many parents want the doctors, social workers and other providers to share protected patient information.
The 1996 privacy law HIPAA (The Health Insurance Portability and Accountability Act) was created in part to protect patients’ information, but it also presents a dilemma for families of people with serious mental illnesses like schizophrenia. Family members wonder how they can protect their loved one if they won’t share treatment details.
Mark, an ordained minister in Moraga, California, struggles with that question almost every day. His son Scott, 24, has schizoaffective disorder and has been hospitalized a dozen times for the hallucinations, mania and depression that it brings. (Kaiser Health News and NPR are not publishing the family’s last name to protect Scott’s identity.)
Mark first noticed a change in his son just before his high school graduation. “There was a deep aggressiveness that started to emerge. We just thought well it was frustration with life or circumstances, things weren’t going well in school,” he recalls.
And it got worse. In the middle of an argument one day, Scott threw a small table at his mother. The police were called, and Scott was taken to a psychiatric hospital. Still in school, he was treated as a minor by the hospital. Mark and his wife were invited to meet with Scott’s doctors and set up a treatment plan.
“We saw, ok this is kind of the way it works,” says Mark adding: “That was pretty much the last time we had that opportunity” to talk to any medical professionals about their son.
The next time Scott was hospitalized, he was treated as an adult and everything was different. The doctors told the family that because of HIPAA, they could not be part of the treatment conversation unless Scott granted permission, which he refused to do. All the family could do was fax a social worker at the hospital a case history they had written about their son and hope that someone would read it.
“We were shut out of the conversation,” says Mark. “And I think that was the first time we really started feeling hopeless. As long as we could feel we were in a conversation with them, we had a sense of hope. All of a sudden there was a wall that went up and that was gone.”