Liza Long’s son first went into the juvenile justice system at 11. He’s mentally ill, but the woman who wrote the viral Internet essay “I am Adam Lanza’s mother” told Congress the police are often the only authorities who can help deal with violent, mentally ill children.
Pat Milam repeatedly begged doctors in New Orleans to keep his psychotic and suicidal son hospitalized. Soon after they refused and released him in 2011, the young man killed himself while trying to set off a giant propane bomb in his bedroom, he told a Congressional hearing on mental health care held after the shootings of 20 young children and six adults last December in Newtown, Conn.
“We tell our daughters and our sons, ‘Oh, you are sick but we are not going to help you until you become dangerous.' Then when they become dangerous we blame and punish them,” Fairfax, Va. writer Pete Earley told the hearing on mental illness. “In that scenario, tell me who is crazy.”
Tuesday’s hearing of the House Energy and Commerce oversight subcommittee was carefully staged to show the anguish felt by parents of mentally ill children and young adults who struggle with police and health care providers to get treatment.
All three parents complained that doctors’ interpretations of HIPAA -- the Health Insurance Portability and Accountability Act -- prevented them from helping their children. Doctors, they said, feared sharing vital information for fear of violating privacy rules. And, they complained, too often they had no one to call but police when their children became violent.
“Parents like me are struggling physically, emotionally, and financially,” Long, a Boise, Idaho, mother of four told the hearing via video link. “The stigma for parents and children is real. The magnitude of this problem will only be recognized after tragedies like Newtown.”
She said her son “Michael” -- she uses a pseudonym to protect him -- has never been properly diagnosed with any one illness. When she told him she was testifying, he told her, "Tell them I’m not a bad kid. Tell them I want to be well,’” she said.
“Parents like me are living in fear. Will my child be bullied? Will my child be the bully? Will I be blamed for my child’s explosive behavior?” Long said. Schools need more money to pay for counselors and behavioral interventionists, Long said.
Dr. E. Fuller Torrey, a psychiatrist who founded the Treatment Advocacy Center, says mentally ill patients are far less likely to become violent if they get treated.
The approach is called assisted outpatient treatment, and he says he used it successfully while working in a psychiatric hospital in Washington, D.C.
“I would go to the court and say, ‘Your Honor, this individual has been to the hospital 19 times. He has no awareness of his illness,’” Torrey testified.
The law allowed Torrey to order such a patient to receive a once-monthly injection of medication to help him stay well -- something that is key with some mental illnesses that cause patients to fear medication, mistrust doctors and to be unable to understand that they are ill. Studies have shown this type of forced treatment can decrease homelessness, arrests and can help prevent the patients from becoming victims of crimes.
Torrey says 44 states have assisted outpatient treatment laws, which allow for forced treatment under certain circumstances, but they are not used consistently.
“The crisis we find ourselves in is not just a question of funding. Rather the current situation demands more intelligent targeting of available funds towards the most promising treatments,” subcommittee chairman Tim Murphy, a Pennsylvania Republican, told the hearing.
Earley says his son, who was 22 when he became ill, finally got treatment. He praised Virginia for tackling mental health after a mentally ill Virginia Tech student killed 32 people and wounded 17 in 2007. But he found it difficult. "Parents can’t do anything because of civil rights laws," he said.
“There was a time when I wished my son had not been born,” Earley, who wrote the book “Crazy”, told the hearing. “But today my son is doing great. He has a job, lives on his own, pays taxes. If he was sitting here today before you today you would not know that he has a mental illness,” Earley added.
“This is not a problem of us not knowing what to do. This is a problem of us not doing it. No father should ever be told, ‘Bring your son back after he tries to kill someone or tries to kill you.’"
Milam said he tried hard to get his son Matthew treated in a New Orleans hospital after he filled his bedroom with bomb-making materials, but his doctors and health insurance company insisted he was well enough to go home. Matthew had repeatedly threatened suicide and had tried at least twice, drinking bleach and slashing his own throat with a knife.
“I can’t tell you the words I used,” Milam said. “I was enraged they would let him out.” Matthew died at the age of 24, trying to set off the bomb in his bedroom, and investigators later said they found enough explosives in there to have leveled the house.
“We have 15 million children and teenagers who have a psychiatric disease or serious learning disorder in the U.S. today. Less than half get any help,” Torrey said.
Dr. Thomas Insel, director of the National Institute of Mental Health, said there’s no coherent U.S. system for managing mental health needs. “We are often forced to respond in an acute way to what is a chronic problem,” he said.
People with diabetes get medications, medical care and counseling to help keep themselves well. Mental health patients need the same consistent approach, he said.