Family and Caregiver Schizophrenia Discussion Forum

Op-Ed: Eliot Engel should side with families of the seriously mentally ill, not the mental health industry

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.