A Parent's OP ED article in the bronxchronicle.com
Eliot Engel should side with families
of the seriously mentally ill, not the mental health industry
By Barbara Biasotti
No parents should have to go through what we recently did. Our daughter has serious mental illness and was living in a group home. But when the home failed to monitor her medications she stopped taking them and started to deteriorate. When she became psychotic, she ran away and the home refused to tell my husband or me. After contacting the group home on three different occasions and each time being told she was “not home,” we started to get suspicious. Only after she was missing two critically important days was the truth finally revealed to us by a county official. Fear came like a wave over my body and stayed with me through the search. Where was my daughter? Was she OK? Being an advocate for the seriously mentally ill, I know that when persons with serious mental illness stop taking their medications and go missing, that things don’t always turn out well.
Like any parent, we called local hospitals to see if she was admitted. But they wouldn’t tell us, for the same reason the group home wouldn’t tell us she was missing. HIPAA, a patient-privacy law, prevented them from giving us that information. But my daughter was off medications and deteriorating. She was potentially dangerous. Even the police were prevented from immediately looking for her. Their hands were tied, because in spite of her mental illness, she had a ‘right’ to be missing. It was only after they were reasonably certain that she had been off her medication long enough to become dangerous, could they begin their search. Their first step? To ask me for dental records and DNA and tell me they would search landfills for her body. No mother should have to face that.
I eventually learned, through a random phone call to a Bronx shelter, that she had been spotted there. But by the time I learned this, she was gone. After being missing for 28 days, my daughter was eventually found in Brooklyn, terribly deteriorated in every way. She is now recuperating in a hospital costing taxpayers far more than keeping her in community treatment does.
None of this should have happened. My daughter is in Kendra’s Law, a program that allows judges to order someone who has serious mental illness and a history of dangerousness associated with refusing treatment to stay in mandated and monitored treatment while they live in the community. According to Mental Illness Policy Org., Kendra’s Law reduces homelessness, hospitalization, arrest and incarceration in the 70% range. So what went wrong? Kendra’s Law is underfunded and HIPAA prevents the law from working its best.
There is a bill pending in the house that would fix this insanity. The Helping Families in Mental Health Crisis Act (HR2646) proposed by Representatives Tim Murphy (R-PA) and Eddie Bernice Johnson (D-TX) creates a tiny exemption in HIPAA. It would allow doctors to disclose to family members of the seriously ill a basic subset of the information they already freely disclose to paid insurance companies if the information is needed to protect health safety and welfare. Clearly giving us the information that our daughter was missing and off medicines so we could start looking for her, would help protect her health safety and welfare. The bill also includes funding for Kendra’s Law and for desperately needed hospital beds for the seriously ill in who cannot be safely treated in the community.
The Helping Families in Mental Health Crisis Act is endorsed by the National Alliance on Mental Illness of New York State, the Harlem chapter, and the New York State Association of Chiefs of Police. It has 186 cosponsors from both parties but Congressman Eliot Engel of the Bronx, and lower Westchester, who sits on a key committee is not yet one of them. We need Congressman Engels’ support to help move this bill and help those like my daughter who have an incapacitating brain disease.
Why the opposition? Congressman Engel is likely misinformed about the facts. An obscure federal agency, the Substance Abuse and Mental Health Services Administration (SAMHSA) funds groups that are opposed to allowing families to help seriously mentally ill adult loved ones. They have falsely convinced certain politicians that persons with serious mental illness, even those hallucinating and delusional and unable to help themselves do not need hospitals and do not need Kendra’s Law and do not need an exemption in HIPAA. They prefer a mental health system that treats the highest functioning, and ignores seriously ill people like my daughter who have a high probability of going to jail, prison, and becoming homelessness when they are not given treatment. Congressman Engel should not align with these groups. He should align with families of the seriously ill like mine and act on the overwhelming evidence that hospitalization for crisis, AOT, and revision of HIPAA could saves lives.
Please call Eliot Engel at (202) 225-2464 and urge him to cosponsor HR 2646.
I don’t want your family to ever have to go through what mine is.
Barbara Biasotti is an advocate for persons with serious mental illness, who resides in New Windsor, NY.