The mental health “big tent” is often praised for its inclusivity, but not everyone inside it is equally visible.

For the past 18 years, my family has watched our son — who lives with a severe mental illness — disappear within a system that increasingly listens only to the voices of those who are far less impaired. Our son has gone through the harmful churn of 30 hospitalizations, multiple community and residential facilities, and repeated episodes of untreated psychosis that have left him with less insight to his own illness, and more at risk for criminalization, homelessness, and an early death. Our family is far from alone in this experience.

Recently, I listened to a New York Times podcast that explored how the autism diagnosis has widened dramatically — encompassing people with a broad range of disability and severity. As the “spectrum” expands, those with the most profound disabilities have more, and often different, care needs. The episode documented how some self-advocates representing higher-functioning individuals sometimes oppose supports — like group homes — that are essential for people with greater needs. A divide has emerged between people with milder disabilities and parents advocating for loved ones with profound ones.

This dynamic mirrors what has happened for decades in mental-health advocacy. While there has been progress for people with mild to moderate mental illnesses, those with the most severe mental illnesses — such as schizophrenia or bipolar disorder — too often get left behind.

According to a report by the National Institute of Mental Health (NIMH), in 2022, there were an estimated 15.4 million U.S. adults with serious mental illness (SMI), about 6% of all adults. Yet the national mental health infrastructure remains deeply inadequate. A 2023 report by Treatment Advocacy Center (TAC) showed that the total number of state psychiatric hospital beds for adults with SMI had reached a historic low of 36,150 beds, roughly 10.8 beds per 100,000 people. As reported in the American Medical Association’s Journal of Ethics, this is far below expert-recommended minimums of 50 public psychiatric beds per 100,000 people.

Because beds have vanished and outpatient alternatives are underdeveloped or underfunded, many people with SMI suffer tragic outcomes: repeated, ineffective short hospitalizations, homelessness, criminalization, incarceration, and premature death. A 2024 review from the Kaiser Family Foundation (KFF) found that among U.S. adults experiencing unsheltered homelessness, 26% met definitions of SMI — a stark overrepresentation compared to general prevalence.

Even when people with SMI gain access to inpatient or outpatient treatment, the lack of stable housing, continuity of care, and community supports traps many in a harmful cycle. A recent study found that people discharged into homelessness experience more than double the 30�’day hospital readmission rate of those with stable housing.

Many families who advocate for needed supports — such as permanent supportive housing, 24/7 care, or Assisted Outpatient Treatment (AOT) laws — are often mischaracterized as wanting to “institutionalize” their loved ones. But for many with severe mental illness, anosognosia — a brain-based inability to recognize one’s own illness — makes voluntary treatment impossible.

The “big tent” approach of many mental-health advocacy organizations — while well-intentioned — unintentionally sidelines those with the most severe illnesses and greatest needs. Their voices, and the voices of their families, are overshadowed, and often completely contradicted or dismissed by people with less severe mental illnesses.

It is especially frustrating for family members to listen to people who are far less sick than our loved ones advocate against the things our loved ones desperately need, like more beds in hospitals. My own son’s illness has involved command voices telling him to dig out his own eyes, to bang his head against the wall, and to not eat or drink anything because it was all poisoned. It caused him to lose significant amounts of weight and become dehydrated as a result. He desperately needed hospitalization for medically necessary treatment to save his life.

Listening to people who have never been this sick advocate against the very treatment he needs to survive has been unbelievably difficult. For families like ours, with loved ones who are far sicker, the indifference to their needs is wrenching to witness.

It is past time for nuanced, layered advocacy — one that recognizes progress for people with mild or moderate conditions and simultaneously fights for robust supports for those with severe mental illness. A humane system must include adequate inpatient beds, permanent supportive housing, AOT availability, accessible outpatient care, and psychiatric prescribers who accept Medicaid. This is not “either/or.” It is “both/and.”

The most severely ill deserve more than token visibility. They deserve a system designed to meet their needs — one that sees them, prioritizes them, and refuses to leave them outside the tent that they so desperately need.

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Leslie Carpenter is co-founder of Iowa Mental Health

Advocacy, Iowa City, and a longtime advocate for people with serious brain disorders.