The "Michelle Alyssa Go Act"

In the 1940s and 1950s, treatment for mental illness looked quite different than it does today. It was easy to commit someone to a psychiatric hospital for mild symptoms, and, unfortunately, sometimes even too easy. Inappropriate admissions led to abuse. Half a million beds were available nationwide. But notably, at this time, there was not an overwhelming homeless population in the United States (like we see today) and people struggling with severe mental illness were not vastly overrepresented in jails and prisons.

The year 1965 was the beginning of the end for federally funded hospitals in the United States. That summer, Lyndon B. Johnson signed a bill into law called the IMD Exclusion. IMD stands for Institutions for Mental Diseases. The bill prohibited the federal government from paying for institutions serving people with severe mental illness with more than 16 beds.

At that time, perhaps it made sense. Antipsychotic medications had been available to those with psychosis for about 10 years (though these early medications had side effects that were sometimes horrific). Many hospitals had poor living conditions, and the objective of the bill was to help institutionalized people find care while living, instead, in the community.

The first result of the IMD Exclusion was a huge change for the better in the lives of the developmentally disabled (who are not mentally ill but were commonly institutionalized with them). People with developmental disabilities generally did not need the institutional care they were receiving, and should never have been locked away from society. Today, many with developmental disabilities enjoy living in pleasant group homes in the community, with the maximum autonomy possible. Typically, food is provided, and staff make sure medicine is taken. Today, we should be proud to see people with autism and Down Syndrome working at movie theatres and grocery stores, remembering how far we have come. Many people today in the US with developmental disabilities are married, and some even have children.

However, despite this great success, the results on the seriously mentally ill from the IMD Exclusion were as disastrous as they had been effective for the developmentally disabled community.

With the closing of hospitals funded by the federal government, the responsibility to pay for care fell to the states, but the states did not want to pay. As a massive wave of hospital closures swept over the US in the 80s, homeless people began to appear in huge numbers, wandering the country, sleeping rough, scavenging for garbage, and desperate for food. Most of this population, if not all, needed the complex care that was no longer available with the closing of hospitals.

Many of these people may have recovered and enjoyed a normal life on antipsychotic medications. However, American legislation gave and still gives people with severe mental illness the choice to take medications or not, and allows them to make the decision to be homeless. Ironically, people who are the very most in need of psychiatric medicine are often the most adamant about refusing it. And few realized that the “choice” to be homeless was actually behavior stemming from an unmedicated psychotic illness.

People with Down Syndrome are not typically seen homeless, living under a bridge. We do not leave our elderly with dementia or our children to choose homelessness. But adults with serious mental illness are expected to seek the medical help they desperately need, while they often do not recognize they are even ill.

One of the most common ways people with schizophrenia finally begin medication is involuntarily, in a hospital setting, and many then begin to develop insight into their illness. But today, due to the massive hospital closure, it is hard to be admitted. While there were half a million beds in the 1940s, today, there are only 40,000 beds across the country.

Also, today, the population of American persons in jails and prisons with serious mental illness has skyrocketed. While the general population has a mental illness rate of around 18%, the rate among jail and prison inmates reaches 44% in jails and close to 37% in prisons, according to SAMHSA.gov (1). Many of these people likely would have benefited from psychiatric hospitalization.

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Practically speaking, the lack of hospital beds means that when a mom or dad takes their struggling son or daughter to the ER, desperate for help with psychotic behavior, they will commonly be denied hospitalization, as there is only space for those with plans to harm self or others. Sometimes this happens twice. With me, it repeated four times.

Unfortunately, even the most gentle and excellent people with psychosis can decompensate to a point where they become violent. After harming someone during a state of acute psychosis, these people are not typically hospitalized with a treatment plan to address their diagnosis. Instead, they end up locked away in jails or prison, with an environment designed to punish, not to heal.

The Michelle Alyss Go Act proposes modifications to the IMD Exclusion. Rather than limiting the federal government to only pay for facilities with 16 beds or less, it raises the number of beds to 36 (2). The Act was named after a woman who was killed by a person having a severe psychotic episode, who should have been hospitalized.

I hope that someday the IMD Exclusion will be overturned completely. Just as the federal government pays for cancer wards, for HIV treatment, and for people struggling with dementia, they should provide better care for the seriously mentally ill, starting by expanding hospital capacity.

Through the federal government’s greater investment in hospitals, we will likely begin to see the severely mentally ill coming off the streets and out of jails and prisons. We may also see young people get help sooner. The sooner a person with a severe mental illness gets into treatment, the better they will do for life. On medications, they will avoid descending into homelessness and not experience psychotic episodes that would likely land them in jails and prisons.

It is my hope that the Michelle Alyssa Go Act is passed, and quickly. It is also my hope that this will make a tangible and significant improvement in access to care for the severely mentally ill throughout our whole country.