The case for legislation to bypass privacy laws so families can get help for an adult child with mental illness was made compellingly last week, when the parents of Isla Vista shooter Elliot Rodger separately sped to the scene where they suspected their son would go on a rampage.
Tragically, they were too late to stop the killing, but their heartbreaking attempt to intervene on that day, and on other days, represents a familiar pattern where family members know there’s a problem, but the law prohibits commitment to a psychiatric facility without clear evidence the person is a danger to himself and others.
At a hearing on Capitol Hill on Thursday prompted by the Isla Vista shooting, forensic psychiatrist Dr. Michael Welner noted that local police had checked out Rodger at his mother’s request and concluded, “Nice boy, have a good day.” The parents knew otherwise but didn’t have the tools to act. Their son was in therapy, but he was so invested in his plan of exacting retribution for the grievances he suffered that “he could write and rewrite and stage manage a production for You Tube with the best camera angles from his director father,” said Welner.
Local police had checked out Rodger at his mother’s request and concluded, “Nice boy, have a good day.” The parents knew otherwise but didn’t have the tools to act.
The notion that people who commit acts like this “snap” is put to rest by writings that show the shooter contemplating his horrific deed since 2012. Based on the way they sprang into action on Friday, his family had more than an inkling of what might be ahead. “We have to appreciate that if someone smells trouble, we’ve got to trust family, and we’re not giving families the wherewithal to direct treatment,” said Welner.
The Helping Families in Mental Health Crisis Act would allow families to intervene without being blocked by HIPAA (Health Insurance Portability and Accountability Act), which has rigorous privacy guidelines that prevent family members from gaining access to medical records or making decisions for children over 18. Edward Kelley, whose son has schizophrenia, described the “virtual madness” he and his wife have endured in the 11 years since their son turned 18. There have been multiple hospitalizations, numerous encounters with the law, and for a time he lived under a bridge. He doesn’t believe he is ill, and refuses medication. His parents didn’t always know where he was, and hospitals refused to reveal information about his treatment, or even tell them if he had been released.
Kelley identified with what the Isla Vista shooter’s family must be feeling. In the extensive manifesto discovered in the young man’s apartment, “That kid acknowledged how isolated and frustrated he was. That’s his mental illness talking. His parents knew a long time ago."
The Mental Health Crisis Act is sponsored by Republican Tim Murphy, a clinical psychologist, and it has 82 co-sponsors, including a number of Democrats. It seems like a no-brainer to create what’s called a carve-out in HIPAA for families dealing with serious mental illness, but nothing is easy on Capitol Hill, and DJ Jaffe, a self-described “Uber-Democrat” and founder and executive director of Mental Illness Policy Organization, went right to the heart of matter. “I get calls all the time from parents wanting help for adult children and the system turns them away. It’s an unpleasant truth, some seriously mentally ill people need to be in hospitals,” he said. “Some people are so sick they don’t know they’re sick. When you see someone yelling, ‘I’m the Messiah,’ it’s not because they think they’re the Messiah, they KNOW they’re the Messiah—and as the Messiah, they’re never going to volunteer for treatment.”
Democrats don’t like anything that smacks of coercion. It conjures up the bad old days when people were warehoused in institutions. Opposition to Murphy’s legislation comes from some mental health advocacy groups and from SAMSA (Substance Abuse and Mental Health Services Administration). Whenever money is involved for federal programs, there’s a divide between Democrats and Republicans. Democrats say the Mental Health Crisis Act “takes a hatchet” to SAMSA and eliminates “a basketful of programs,” including the National Suicide Prevention Program and the National Minority Aids initiative. “They’re jumping to the conclusion these programs are not effective,” says a Democratic aide. Democrats are also wary of opening up the HIPAA law, fearing unintended negative consequences.
“I’m about as liberal as you can get,” says Jaffe, “but for too long we Democrats have failed to recognize not everyone will recover…and involuntary treatment is not always a bad thing.”
He puts the number of people with serious mental illness at 4 or 5 percent of the population, and for this small subset of people, he advocates expanding Assisted Outpatient Treatment (AOT). It has been successful where tried, especially in New York, and a pilot federal program has been approved and is waiting for funding in the congressional appropriations process. After full due process and with a lawyer, a judge can order six months of monitored treatment in the community. Jaffe calls the approach “an off ramp before jail, a fence at the edge of the cliff rather than an ambulance at the bottom.”
Political infighting aside, families dealing with serious mental health issues will welcome these modest but transformative changes that recognize the urgency to treat, or confine, a person in crisis before there is tragedy.