The problem that just won’t go away

When I read the Salt Lake Tribune editorial on July 2, my heart sank. A Utah man with severe mental illness had died in a poorly regulated care home, with a mere $8,000 fine levied against the managers.

The editorial was fierce: “It doesn’t seem to matter how horrible the care … how many of these residents live in filth and squalor … the responsible authorities apparently make little to no effort to whip the homes into shape or, failing that, shut them down.”

In 1976, my disabled brother, Mike Trimble, died in just such a care home, in Denver. I’ve spent a decade researching his life and death for my book, “The Mike File,” and I know well the details and politics of his death.

Mike left home after turning 14 when his diagnosis — “paranoid schizophrenia, capable of violence” — shattered our family. A court committed him to the Colorado State Hospital in 1957. He never lived at home again.

When mental hospitals emptied their wards a decade later, Mike was mainstreamed back to Denver. Rejoining our family did not go well. Angry and resentful, Mike’s visits triggered emotional chaos. He soon cut off all contact.

In 1976, Mike died during a seizure, alone in his boarding home and undiscovered for three days. The Denver media used his solitary death to expose the “ratholes” that warehoused people with mental illness. Our mother found out about the loss of her 33-year-old son from the front page of The Denver Post.

The owner of Mike’s ironically named “Carefree Guest Home” described his death as a “slip up.” The staff member who should have checked on Mike was “snowed under.” Two other residents had died unnoticed in previous months.

In the days following Mike’s death, the director of the Colorado Commission on the Disabled demanded action. “I’m …thinking …of the other 85 residents there,” he said. “How many of them were not seen over the weekend but did not die?”

Officials issued “a severe reprimand.” Dr. Paul Kuhn, director of Denver’s Personal Health Service, said that Carefree had made “significant improvements,” but he mentioned only one: “Anyone not in the breakfast line is sought out and checked.”

Kuhn gave Carefree a break because of poor funding that left the guest home perpetually understaffed. “This is more than a Denver problem,” he said. “It’s a statewide problem. It’s a great societal problem.”

Reprimand issued, case closed, but hardly progress.

In 2002, The New York Times ran a Pulitzer Prize-winning series that included the story of Randolph Maddix, living in a private home for the mentally ill in Brooklyn. Maddix died during a seizure and wasn’t found for many hours: “His back, curled and stiff with rigor mortis, had to be broken to fit him into a body bag.”

In 2006, The Milwaukee Journal-Sentinel ran a series on the horrors of board-and-care homes, including the tale of a resident who died and wasn’t found for three days. These stories of outrageous neglect keep recurring, always about people overwhelmed by their mental disorders and neglected by their caregivers.

Why does Dr. Kuhn’s “great societal problem” persist?

As we steadily eliminated more than 500,000 beds in state psychiatric hospitals starting in the mid-1950s, according to a study by the American Psychiatric Association, the number of people with severe mental illness was growing with the U.S. population. Stigma and shame often silenced their families. Effective treatment disappeared into the fog of competing agencies, with no coordinated plan for people with chronic mental illness. Then add today’s epidemic of homelessness and prisons crammed with people who need psychiatric treatment more than incarceration.

While researching my book, I spoke with a Colorado psychologist who summed up our failure to care for our mothers and fathers, our brothers and sisters, our children and friends: “The mentally ill don’t have a strong lobby.”

The recent Tribune editorial proposes incentives for decently run care homes and appropriate punishments for neglect. But what we really need is a transformative system of care for the vulnerable and voiceless, and housing for those without homes. We know what to do. So far, we have chosen not to act.

This problem remains with us, just as it did in 1976, when I lost my brother. Please don’t let us read these same plaintive stories and unanswered calls for action when another 50 years have passed.

Utah writer Stephen Trimble is a contributor to Writers on the Range, writersontherange.org, an independent nonprofit dedicated to spurring lively conversation about the West. His latest book is titled, “The Mike File: A Story of Grief and Hope.”