(Apr. 4, 2016) 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. 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, 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.
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. 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. 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.
[HR 2646] 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.
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 did.
BARBARA BIASOTTI
NEW WINDSOR, NEW YORK
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