Sunday, April 21, 2013

HIPAA Handcuff Hearings: HIPAA (patient privacy) laws often prevent parents from getting info they need to see their loved ones get care.

The US House of Rep., Committee on Energy and Commerce, Subcommittee on Oversight and Investigations will hold a hearing on:  


Friday, April 26, 2013, at 9:00 a.m. in 2123 Rayburn House Office Building 

“Does HIPAA Help or Hinder Patient Care and Public Safety?”. 

PLEASE contact members of the committee and tell them you support reform of HIPAA so relatives of seriously mentally ill can help their loved ones get better more appropriate care.

This is as far as we've ever gotten to reform HIPAA, so lets see what we can do.

Thursday, April 11, 2013

At 18, loved ones have full control of their health decisions. Laws need to change.

Rachel Pruchno is director of research at the New Jersey Institute for Successful Aging. She is also author of the forthcoming memoir, Surrounded by Madness.  

Reprinted from USAToday with author's permission.

I've been dealing with the mental health system since my daughter was 12. Diagnosed with bipolar disorder at 16 and borderline personality disorder at 18, I thought I'd seen it all. Once she turned 18, however, I went from valued member of the health care team to its pariah.
America's mental health system is in crisis largely because families are excluded from participating in the care of loved ones. The National Institute of Mental Health estimates that 11.4 million Americans suffer from serious mental illnesses, including schizophrenia, bipolar disorder and major depression. About half of people with mental illness suffer from a lack of awareness about their illness, compromising their abilities to make informed decisions.
Yet, legally, at 18 they have full control of their health care and other life decisions. In many states, getting treatment requires that the person first exhibit dangerous behavior.
But what about young people such as my daughter, who has not exhibited violent behavior, but nonetheless needs treatment? Before my daughter turned 18, my husband and I consulted a mental health attorney. He told us that while we could petition the court for guardianship, he advised against it because it would be expensive, unlikely to be granted, and temporary, typically three to six months in duration.
Too many barriers
Doing the right thing should not be so difficult. Laws need to be changed for the sake of people with mental illnesses, their parents and for society.
Other parents have also tried to help their children, including some who began exhibiting odd, but not violent, behavior. The inability to persuade — or force — these young men to get help resulted in deadly consequences.
Details emerging last week revealed that the parents of Jared Loughner, 24 — whokilled six and wounded Rep. Gabrielle Giffords and 18 others in Arizona — disabled their son's car each night to try to prevent him from harming others. They confiscated his shotgun after Pima County College police warned that their son might be a danger to himself or others. They pleaded with their son to get help. He refused.
James Holmes was not living with his parents when he killed 12 and injured 58 peopleat the Aurora, Colo., movie theater. Holmes was on the radar screen of mental health professionals at the University of Colorado before the massacre, yet even they were powerless to intervene.
Reasons for change
There are good reasons to give parents more legal leverage over adults with mental illnesses:
  • Most severe mental illnesses are diagnosed in the early years of adulthood, 75% before age 24Many first experience disorganized thought as college students.
  • When families are involved, health care providers gain a more accurate understanding of the patient's history. This, in turn, guides better treatment decisions.
  • Research shows that when families are involved, rates of treatment adherence are higher and rates of hospitalization are lower.
My daughter is 20. She is addicted to methamphetamine and lives on the street. Her father and I have begged to help her. She continues to refuse treatment.
Laws should take a more reasoned approach that empower families who know when there are problems and want what's best for all involved. It is time to realign laws with science and compassion.

Wednesday, April 10, 2013


Fifty Years of Failing America's Mentally Ill - Op Ed by Dr. E. Fuller Torrey as appeared in the Wall Street Journal 2-5-2013


Knowing Emergency Hospitalization Standards Can Help

telephoneNewly updated, state-by-state information about emergency hospitalization standards is now available on our website.
Emergency Hospitalization for Evaluation: Assisted Psychiatric Treatment Standards by State” provides essential information about criteria for short-term hospitalization for a psychiatric evaluation, also known as a “72-hour hold,” “pick-up,” “detention” and other terms.
“We research, update and publish these resources because knowing one’s own state law is critical to timely and effective intervention in a mental illness crisis,” said Doris A. Fuller, Treatment Advocacy Center executive director.
Also recently updated was "Initiating Court-Ordered Assisted Treatment: Inpatient, Outpatient and Emergency Hospitalization Standards by State," state-specific information about who may initiate proceedings leading to court-ordered treatment for an individual with symptoms of severe mental illness
For additional information about responding to a psychiatric emergency, visit the Get Help section of our website and our Civil Commitment Laws and Standards page.

Saturday, April 6, 2013

Condolences and Prayers to the Warren family

Pastor Rick Warren’s son, Matthew, commits suicide, church says

Mental illness is a mugger. It sneaks up on you and says "Give me all your money or someone will die." ~ Ruth Johnston, Author and mother of two children with severe mental illnesses

The Day My Life Turned Upside-Down – personally speaking

(April 5, 2013) Six weeks ago, my life was turned upside-down in five minutes when my schizophrenic adult son killed my mother as she was eating breakfast.  
ruth_johnstonLevi had never raised a hand in violence against me or against his grandparents, but for many months he had believed a hallucination that his grandmother had tried to kill him. He could not stop believing that she was evil, no matter what we said. His schizophrenic disease had been developing for many years, but we could not persuade him to accept medicine to treat it. Instead, he believed that he was an angel with alien cyborg parts. Without clear, imminent signs of violence, we could not force treatment.
What a contrast with my past experience raising a bipolar child. "Devin," my child with bipolar, is now 23 and although he still has many challenges, he is a responsible member of society who accepts his illness as just part of life to manage. His personal form of bipolar disorder is very depressive, not manic; there is no doubt in my mind that, untreated, he would have died by suicide in his teens. The odds were always against his making it to age 25, and we're nearly there. The credit for every step of the way goes to advice I received in our support groups. He was put on the wrong medicines more than once, and I only knew they were wrong because other parents told me so. 
We all hate spending money, but it's a blessing when money can actually buy a solution.  With "Devin," it could. At several points, I made high-stakes decisions to spend obscene sums of money getting him to experts outside our local area. I'm sure I threw at least $2,500 at the problem in just one year. We paid $1,700 for just one high-profile evaluation at Harvard, as the only way to get him off a wrong medicine that was killing him by inches. Then we took a train (every six weeks, all year) to NYC to see a pediatrician who specialized in bipolar children, and he didn't accept any insurance. We paid "out of pocket"---to put it mildly. Mental illness is a mugger. It sneaks up on you and says "Give me all your money or someone will die."
When my older son Levi began showing signs of schizophrenia, he was only 13. There was still time to throw money at the problem and save ourselves. But nobody recognized the signs of illness; it developed under the cover of Asperger Syndrome so he was expected to be “weird.”
There wasn’t a specialty organization for early schizophrenia, so I didn't have parents pointing out the bits that didn't fit, telling me "that's exactly what my kid did," or "that is not Asperger’s syndrome that looks like psychosis, please get help now." As he lost the ability to concentrate, withdrew from human contact, stopped smiling and was chronically offended, we could have put him on an antipsychotic medication. But we didn’t know. We tried to find places where he could succeed, not knowing that he was slowly losing his ability to understand the real world. He had three semesters of college credits completed when the disease finally blew the whistle on education. By then, Levi was over 18 and we had no legal way to make him get treatment. He talked about demons and scribbled on the walls, and we pleaded with him to get help; but diagnosis didn't come until the disease finally broke out into really public view, not long before he listened to a voice one last time and killed my mother.

None of the help I had for "Devin" was available for Levi. He turned 18 and we lost legal control; he was diagnosed with schizophrenia at 25 and nobody could make him get treatment. Money can't help us now; my mother is gone forever, and Levi will spend his life in the hospital. I cry every day because I miss them both so much. It should not have come to this.