Commentary: Colorado Mental Health Care System Neglects Most Seriously Ill
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As a volunteer for NAMI, the National Alliance on Mental Illness, I am used to advocating for mental health care and the supportive services that go with it. But the way we have dealt with severe mental illness in Colorado has been negligent and often cruel. Now, we’re talking about it, and making plans to make changes. Governor Jared Polis has appointed a state Behavioral Health Administration and legislation is in the works to make adjustments to our mental health-care system. But we’re not going to make real headway on the problem unless we start thinking fundamentally about the needs of all mentally ill people, including those with SMI, in a continuum of care — instead of putting the focus on the entities that purport to help them.
Regional Accountability Entities (RAEs) are the decision-making groups across the state that decide who gets mental health care and who doesn’t in the publicly funded Medicaid system. Most of the RAEs are insurance companies. If you wonder about the efficacy of insurance companies making decisions about the need for mental health care for Coloradans, you’re not alone. Senator Chris Kolker, representing Arapahoe County, sponsored a bill during the 2022 session to examine conflicts of interest in RAEs responsible for public behavioral health services.
Boulder-area State Representative Judy Amabile, who has a family member with mental illness, is leading the effort to address some of the weaknesses in our statewide mental health-care system at the legislature. Many mental-health initiatives she has introduced this session and last year have been responses to crises — not only in the lives of SMI patients, but in the system that has failed them. Last session, Representative Amabile sponsored legislation that limited the amount of solitary confinement in jails forced on those with severe mental illness, after 31-year-old Ryan Partridge, who was psychotic, pulled out his eyes while in solitary confinement in the Boulder County Jail.
So many of the laws created to address the needs of SMI patients in Colorado involve the criminal justice system. because our jails are now the largest domiciles housing people in the state with mental illness. Why? Colorado has long waiting lists for in-patient psychiatric services: psychiatric beds. Several in-patient psychiatric programs in the state have closed in the past two decades.
The beds that become available in Colorado are mostly earmarked for forensic patients, those SMI patients in the criminal justice system. A lawsuit settled three years ago between the advocacy group Disability Law Colorado and the Colorado Department of Human Services is forcing the state to pay up to $10,000 per day in fines because of the backlog of severely mentally ill people in jail who are not competent to stand trial. The federal suit acknowledged that SMI patients should not be languishing in jail. Fort Logan, with fewer than 100 psychiatric beds, has been pressed into service for competency restoration cases (this doesn’t mean treatment; it means defendants can, for example, identify the judge, prosecutor and defense attorney in a courtroom). The result is that SMI patients who are not in the criminal justice system are less likely to get a bed. Mental Health Colorado, one of the state’s principal mental-health advocacy organizations, acknowledges that an SMI patient is less likely to be admitted to Fort Logan than to become jailed, homeless or dead.
The just-over-500-bed Colorado Mental Health Institute in Pueblo has been full for decades. With few step-down facilities to assist in getting patients reintegrated into the community, about 20 percent of them don’t move on. By default, for these few SMI patients, the hospital has become their home.
Rena (for the sake of their privacy, I have changed the names of members of the SMI group) recently sold a ranch in Longmont after spending $250,000 of her retirement income to finance in-patient mental health-care stays for her 26-year-old son with schizoaffective disorder (a mental illness combining the delusional aspects of schizophrenia and elements of mood disorder, like mania). These private hospitalizations cost in the tens of thousands of dollars per month, so they are not available to most people. But even when families can afford them, public hospitals often will not coordinate with them to provide continuous care. Rena begged the medical director of a hospital in Colorado Springs to hold her son for a week until he could be admitted to a private psychiatric facility. What we often see in Colorado is that at the first sign that the patient’s symptoms are abating, to any degree, the patient is flagged for release. Rena explained that her son’s depressive episode would be followed by a manic one. The doctor said his “hands were tied.” Rena wants to know by whom, after her son was released homeless in winter temperatures in shorts and a light jacket, with no shoes… psychotic! She sent her brother to intercept him. When they got to Boulder, Rena’s son started running the eighteen miles to her ranch in his bare feet. He got to her front porch bloodied, and started ranting about turning off radios and TVs to silence the voices in his head. When she offered him a glass of water, he attacked her. He’s now unmedicated in the Boulder County Jail. Although Rena blames Colorado’s inadequate mental health-care system for her injuries, her son faces ten years in prison for each of the three bones in her body that he broke. “It’s like putting someone in jail with stage four cancer,” she weeps.
The American Psychiatric Association tells us that mental illness is a medical problem, like heart disease or diabetes. But people with mental illness are not treated the same way that people with other medical diseases are treated, especially those with severe mental illness, and particularly in Colorado. In 2022, Colorado is ranked 51st of all states and the District of Columbia for access to mental-health care for adults, according to the national advocacy group Mental Health America. The Treatment Advocacy Center, a spin-off of NAMI, estimates that the minimum number of beds per 100,000 people needed for SMI patients is fifty. In Colorado we have ten, and they’re full, with lengthy waiting lists.
After thirty years of watching her now-45-year-old-son with schizophrenia decompensate in jails, only to be released homeless to a shelter or to her home, Maria got angry with the Larimer County DA. “I was basically running a psychiatric hospital in my home,” she says. After four months in segregation in a mental-health jail pod without medication, her son was much sicker and she was less able to care for him. After a week and a psychotic break, he attacked her. Now he had a charge and a restraining order not to be near her, and she was the person in charge of giving him medication. She got him a hotel room to live in: “I had to sneak over there…to administer his morning and night medications and make sure he was safe and had food. There was nobody else to do this, and without his medication, things could have become even worse.” This is ludicrous…as ludicrous as a public mental-health system that requires that people with mental illness advocate for themselves, even when they’re psychotic. For a time, he told me he was the Pope, muses Maria. How was he going to advocate for himself?! This apparently made sense to Larimer County officials, who finally found a place for Maria’s son in permanent supportive housing. She knows this is a rare opportunity in Colorado, which she attributes to her relentless complaints and the very long and unhelpful time her son cycled through a system that, she says, contributed to his illness. She talked about his access to a psychiatrist in his new facility, who sorted out his medications and enlisted his support in his own care.
Amy says that her son’s health only began to improve when he understood that medications he was taking for his schizophrenia were helping him. Amy’s son cycled through a familiar pattern in Colorado of being too ill to advocate for himself at a public mental-health center, being turned loose from that center, becoming homeless, and being helped by her, which resulted in his assault of her and his spending almost a year in jail. Coming out of jail, Amy’s son risked cycling back into the unstable, unmonitored and unmedicated places that led to his jail sentence. But he was put into what Amy calls an enhanced shelter created by his public mental-health center. Menta- health workers at the new Solutions Center in Denver were able to get through to Amy’s son, and he began to participate in his mental healthcare, she says. Unimaginably, however, Amy’s son could only stay at the Solutions Center for thirty days. This is a young man who is going to need ongoing support to take medication; he can’t do it himself. He was released homeless from this facility twice. He found his way back to the center through a crisis center, convinced that the Solutions Center had helped him and that’s where he needed to be.
Some of the family members in NAMI with success stories are old folks in their eighties whose children experienced long-term psychiatric care forty to fifty years ago in Colorado. While psychiatric institutions had their problems, long-term psychiatric care was effective for many SMI patients. With time, they were able to adjust to their illnesses, adapt to medications and learn to navigate their lives.
Long-term in-patient care facilities are where many of the state’s SMI patients need to be. If they can become more independent, so much the better. But the likelihood that they will experience “recovery,” a buzzword at public mental-health centers, is limited, considering that without medication and counseling, their conditions and their sense of themselves as potentially well people significantly deteriorates.
The state legislature’s Transformational Behavioral Health Task Force has made recommendations for the use of federal dollars from the American Rescue Plan Act of 2021 to add to supports in that part of the mental-health system that some of us call “mental health lite.” Initiatives are certainly welcome that would, for example, put more social workers in police cars, align physical medical care with mental health care, and expand the state’s behavioral health workforce. One of the initiatives would coordinate the continuum of care for mental-health patients. But without in-patient psychiatric beds for the very ill, they won’t get what they need, no matter how coordinated the system. There’s no substitute for in-patient psychiatric beds for the more than 100,000 people in Colorado who are estimated to have SMI and who may, at some point, need them. If we don’t take care of the most seriously mentally ill, the rest of our system is much less effective — and it’s unjust. Ill people should not be put in jail. Do we jail people with Alzheimer’s? Do we jail children who can’t take care of themselves? Jailing people with SMI who get arrested for crimes like trespassing and stealing food amounts to the same thing. Keeping them in jail without treatment is like jailing any kind of chronically ill person because they’re sick. And like other untreated chronically ill patients, SMI patients get sicker in jail.
The number of untreated patients with SMI has reached crisis proportions in many parts of the country; in Colorado, it’s a tragedy. Why beat the drum for the care of SMI patients now, when we’re paying some attention to the system at large? Because we have the worst access to adult mental health care in the country! Because we’ve received hundreds of millions of federal dollars…and we haven’t created a substantial number of new psychiatric beds. We don’t need a few beds, even a hundred beds that mental health-care administrators try to eke out of two overcrowded public hospitals. We need new psychiatric hospitals with hundreds of beds if we are to treat chronic mental illness with the attention SMI patients, like any ill people, deserve.
Those who hawk the system for any expansion of in-patient psychiatric beds are convinced we won’t see more beds without a legislative mandate. We may have to create new funding streams by re-examining tax limitations created by existing legislation. We may have to rethink state budget allocations in favor of in-patient psychiatric care. We may have to scour existing services provided by public mental-health centers to include more in-patient care for SMI clients.
Colorado has a reputation for being a healthy place to live. When we scratch the surface, though, we come face-to-face with Coloradans with SMI. Severe mental illness can happen to anyone in any family. And what we want to tell those families is: There is help!
Theresa Schiavone is a mental health-care advocate who’s a volunteer for the Denver chapter of the National Alliance on Mental Illness, and a member of the Pubic Policy Committee for NAMI Colorado. She writes a blog, coloradomentalhealthreport.com, designed to inform people in the mental-health community about new developments that might improve their access to vitally needed mental health services in Colorado. A retired teacher and journalist, she worked in Colorado for several decades, and was a contributor to the Cultural Desk at NPR in Washington with stories from the regional West.
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