Institutionalization Is Not the Answer
When I was born, institutionalization was the norm for people living with mental illness. More than 500,000 Americans resided in state psychiatric hospitals during the 1950s. Today, despite a U.S. population that has more than doubled, the number of people living in those institutions has declined by nearly 90 percent—a change that reflects one of the most significant shifts in mental health policy in our nation’s history.
Now, that shift may be at risk.
Last week, the U.S. Department of Justice issued an opinion that could weaken longstanding protections against unnecessary institutionalization and encourage states to rely more heavily on psychiatric facilities. The opinion suggests that states do not have an affirmative obligation to provide home- and community-based services. This position challenges decades of interpretation under the Americans with Disabilities Act, the Rehabilitation Act, and the landmark Supreme Court decision in Olmstead v. L.C.
If adopted by the courts, this reasoning could make it easier to place individuals in institutional settings for indefinite periods of time. That possibility should concern all of us.
This is not a new debate. Several years ago, a public official visited our office seeking help for a constituent whose adult son was living with serious mental illness. The mother wanted to place her son in an institution and was frustrated to learn that doing so was not easy.
As we discussed the situation, I asked a series of questions. Had he received treatment through local hospitals or the DuPage County Health Department? Was he connected to a psychiatrist, therapist, or case manager? Had he or his family attended support groups or educational programs through NAMI DuPage? Was he receiving medication and other evidence-based treatment?
The answers suggested that many of the available community supports had not yet been explored.
For much of the twentieth century, hundreds of thousands of Americans spent years (or lifetimes) in psychiatric institutions. While some facilities provided compassionate care, many became places of isolation, neglect, and hopelessness. Individuals were separated from their families, their communities, and often their futures.
As someone who has read the accounts of pioneers such as Nellie Bly and Dorothea Dix—and who remembers the cultural impact of Ken Kesey’s One Flew Over the Cuckoo’s Nest—it saddens me that some still view institutionalization as the primary solution to mental illness.
Over the past several decades, our nation has largely embraced a different vision: helping people live, work, learn, and recover in their communities whenever possible. That vision led to the development of peer support programs, supported employment, family education, crisis intervention services, supportive housing, and countless other community-based approaches.
At NAMI DuPage, we witness the power of these services every day.
We see people who once believed their lives were over become parents, employees, volunteers, college students, and community leaders. We see individuals who have experienced hospitalization and crisis use their lived experience to help others find recovery. We see families move from fear and exhaustion to understanding, resilience, and hope.
People recover—not because they are hidden away, but because they are connected to treatment, support, housing, purpose, and hope.
Some argue that deinstitutionalization failed. The reality is that we emptied hospitals far faster than we built the community-based system that was supposed to replace them.
Too many people today cycle through emergency rooms, homelessness, jails, and short-term hospitalizations not because community care does not work, but because the supports they need are unavailable, inaccessible, or underfunded.
The answer is not a return to widespread institutionalization.
The answer is a stronger continuum of care: more psychiatric beds when hospitalization is truly necessary; more supportive housing; more crisis services; more peer support; more outpatient treatment; and more resources for families. People deserve the right care, at the right time, in the least restrictive setting possible.
Institutionalization should be exceedingly rare, time-limited, and reserved for situations where no less restrictive alternative can safely meet a person’s needs.
In the 1975 case O’Connor v. Donaldson, Justice Potter Stewart wrote for a unanimous Supreme Court that the Constitution prohibits the “forced confinement of a person who is not dangerous and can live safely in freedom.” As he observed, a state may not “fence in the harmless mentally ill solely to save its citizens from exposure to those whose ways are different.”
The newly released Department of Justice opinion is not law. However, the case of Texas v. Kennedy, which raises many of these issues, is moving through the courts and could eventually reach the U.S. Supreme Court.
Institutional care has a role in our mental health system. There are times when hospitalization is necessary and lifesaving. But institutions should be places people go to receive treatment—not places where they are sent because treatment, housing, and support are unavailable elsewhere, and definitely not somewhere they go to be warehoused until they die.
A compassionate society is not measured by how many people it can confine. It is measured by how many people it can help recover, reconnect, and belong.
If you care about these issues, please contact your elected officials at the local, state, and federal levels, including the White House. Let them know that people living with mental illness deserve dignity, opportunity, and the chance to recover in the communities they call home.
Geri Kerger JD, MS
President & CEO
NAMI DuPage
117 N County Farm Rd | Wheaton, IL 60187