Rachel Pruchno Ph.D.

All in the Family

Sandy Hook Shooting Report Missed One Critical Issue

The case of untreated mental illness

Posted Dec 11, 2014

Lanza exhibited significant communication and sensory challenges, socialization delays and repetitive behaviors from a very young age, yet he was three when initially referred for special education services. Early intervention is critical. The report recommends universal screening for behavioral health and developmental impairments. Moreover, for children displaying developmental challenges like Lanza’s, thorough evaluation and care coordination are crucial. Using hindsight to identify inadequacies in the family’s and educational system’s responses to young Lanza, the report calls for better training and workforce development, increased family support, bolstered education, and more comprehensive services.

None of this is wrong. In fact, research indicates the important roles played by early and consistent intervention for people with mental illness.

But the report fails in one significant respect.

Lanza was 20 when the Sandy Hook tragedy unfolded on Dec. 14, 2012. Despite Lanza’s life-long struggle with mental illness, in the eyes of the law, he was an adult. Lanza taped black trash bags over his bedroom windows. He communicated with his mother by email even though they shared a home. He refused to take medication and would not engage in recommended behavioral therapies. But as an adult, Lanza had the right to refuse treatment. Though Adam’s mother probably understood how sick he was, she had no say about his care.

It’s a scenario with which I’m too familiar. For 10 years my husband and I shuffled our daughter – diagnosed with Attention Deficit Hyperactivity Disorder, bipolar disorder, and borderline personality disorder – to psychiatrists and therapists. Each morning I watched her swallow her medications. I took her to weekly therapy sessions. Her illness effectively managed, she was accepted to a top-ranked college. Then, at 18, she decided she didn’t need medications or therapy. Her doctors insisted she was incapable of making healthcare decisions, but legally she could refuse treatment. She left home, became addicted to methamphetamine, and now lives on the street when she’s not in jail.

People with mental illness and society would be better off if we solved the problem of untreated mental illness. Although people with mental illness rarely become violent like Lanza did, untreated mental illness presents a threat to others. Just as people with typhoid fever aren’t allowed to work in restaurants and people with epilepsy must medicate to drive, so too must treatment for mental illness be regulated.

This doesn’t mean forced medications or inhumane institutionalizations. It means using common sense. People with mental illness must be respected and involved in treatment decisions as their ability allows. But the public has rights, too. We must not require persons with mental illness to present an imminent danger before they receive treatment. We cannot wait until people with mental illness ask for help.

Good models of shared decision-making exist. When dementia is diagnosed, health care proxies and surrogate decisions are used. And they should be. Imagine the uproar if adult children were told nothing could be done until their parent with dementia presented an imminent danger or asked for help. What would public response be if persons with dementia roamed our streets and filled our prisons?

To be sure, today’s misguided laws were developed to protect the civil rights of people with mental illness, rights trampled before deinstitutionalization. Protecting civil rights is critical, but when healthcare providers agree people are incapable of making healthcare decisions, empowering them to do so without assistance is not only absurd, it’s a recipe for disaster.

How many more tragedies must happen before we recognize the imperative of treating serious mental illness? Our mental health and legal systems failed Lanza and the Sandy Hook victims, but they also failed our entire society. Until these systems change, the senseless heartbreak is certain to continue.

This blog post was originally published as an op-ed piece in Star-Ledger on November 29, 2014.