Eleven years ago today, my mother died. You may have seen our story on the news: my son Levi stabbed her while she was eating breakfast because he believed the Archangel Michael told him that, “it’s time to kill the witch.” You may have wondered why we hadn’t gotten his brain disorder fixed before such a heart-splitting, calamitous thing happened: “They should have gotten him help.”

I know I would have thought so before schizophrenia became my family’s problem. But I get it now. I know why, over and over, families can’t get help before something terrible happens. We’re using the wrong standard.

In past years, people who suffer from schizophrenia were viewed as being just different, perhaps victims of family or societal dysfunction. Many sane people said to themselves, “I wouldn’t want someone forcing me to take medicine unless I was downright dangerous.” And so that’s what our law encoded: that the point at which we can legally insist on medication is only when there is clear and present danger.

But it’s the wrong way to measure brain malfunction. For us, Levi was dangerous for exactly 10 minutes on Feb. 19, 2013. Before and after that short window of time, he wasn’t angry or violent. We knew his brain was malfunctioning. He had false memories and strange beliefs, he got confused by ordinary household tasks, and sometimes he didn’t even understand our speech.

These clues indicated danger, but not in a “clear and present” way. They only showed that his concept of daily living was radically off kilter — he might think senseless actions were right and appropriate. But that is dangerous, and as we know, that’s how it played out. He is now a gentle, extremely quiet, disabled man who is not always sure why he is in prison. He has spent 11 years pacing figure 8’s and trying to remember what it feels like to ride a bicycle.

In 2018, state law changed so that counties are now permitted to adopt a more appropriate standard: disability, not danger. Someone needs treatment because he is “unlikely to survive safely in the community without supervision.” Using this standard, families may petition the court to order someone to cooperate with a team (assisted outpatient treatment, or AOT) that supports their need for medication. For us, it would have made all the difference. I had plenty of evidence to meet that standard, and Levi would have obeyed a judge’s order.

But to become proactive, not just reactive, is a major paradigm shift. To date, no Pennsylvania county has fully implemented AOT, so the state law option just sits there. I believe that Allegheny County can, should, and will be one of the first counties in the commonwealth to make this shift. The county is taking exploratory steps, and I want to thank and encourage them in this. But we need to begin educating our people as well as our officials about why we urgently need to leave the “danger” standard behind.

Does your family have a story like mine? Do you want to be involved in telling the county why we need this change? Contact me at aotforalleghenycounty@gmail.com and help make a difference.

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