All Jerry Chenoweth wants is to be left alone. But that desire conflicted with a system that wants to protect him -- from himself.
He wants to be free.
In other words, he wants to be left alone.
Of course, as with most disabled people -- with all people, in fact -- in Jerry's case freedom is not just a matter of living unfettered by external authority. It is that, but it's more. To live fully free, Chenoweth needs a little help. He needs help with his medications -- help paying for them, and help remembering to take them on schedule. He needs some assistance with grocery shopping, and ideally, a little help with housekeeping.
Chenoweth doesn't need much, but because his needs arise from his disability, they impact his life way out of proportion to their size. His needs got him institutionalized six years ago. Chenoweth has lived with HIV for 22 years. As soon as they found out what the AIDS virus was, that's when they found out I had it," he says.
In February, he made a decision which sounds perfectly reasonable to Jerry's friends and supporters here in the Denver metropolitan area's disability community, but which turned out to be monumentally controversial: He left Poplar Grove Care Center "A.M.A." -- "against medical advice." Some doctor who barely knows him said that he couldn't live independently. He left anyway.
That's when all bureaucratic hell broke loose.
Here's what happened:
In late January, Chenoweth contacted members of the Colorado Cross-Disability Coalition (CCDC), asking for their help in getting out of Poplar Grove Care Center. Poplar Grove is a nursing home in Commerce City, Colorado, a suburb north of Denver, which specializes in "behavioral care" for people diagnosed with psychiatric disabilities. (It's never been clear to his supporters exactly what Chenoweth's psychiatric issues might be. Poplar Grove officials have said he suffers from serious mental illness, but have never offered a documented diagnosis.)
"He'd been trying to get out for quite some time, and nobody would help him," says Todd Lobato, a CCDC organizer. Lobato had a long discussion with Chenoweth. "I immediately began asking questions about his condition, and what was preventing him from leaving," Lobato recalls. "He was very clear about his medical diagnoses and his functional limitations. He was very aware what of what was going on. I asked him to do a few things, such as contact CAP [the Colorado AIDS Project]. Everything that I asked him to do, he absolutely 110 percent followed through with it."
If Lobato sounds a bit obsessed with Chenoweth's level of self-awareness, it's understandable: Ever since March 2, when Lobato and a colleague spirited Chenoweth away from Poplar Grove, the authorities have been painting Chenoweth as someone with "poor insight into his condition, poor insight into his medical needs . . . very poor impulses . . . -- all of this posing a danger to himself and society," says Lobato.
CCDC staffers saw a very different Jerry Chenoweth from the one described by nursing home and county staff. "He clearly was capable," says Lobato.
But APS worker Victor Montoya was able to convince a judge otherwise. Five days after Chenoweth escaped, Montoya obtained a court order granting him and the county emergency temporary guardianship of Chenoweth -- without any input from Chenoweth himself.
"The respondent should remain in the supervised, structured setting he is currently in until an appropriate care plan can be implemented," the court order states. In court documents submitted by Adams County, officials warned that Chenoweth was "being ill-advised by an advocacy group that he should leave the facility and live independently."
Chenoweth insists that his rights were violated, because he was not notified of the court hearing in advance, and he was not present."The judge didn't talk to me," says Chenoweth. "If she had, she would have said, 'Victor, lay off.'"
Citing confidentiality, Montoya refused to discuss Chenoweth's case, but he agreed to talk to Ragged Edge about adult protection laws generally. "I really can't talk about that situation," Montoya says, "but I can say that there's always an attempt to serve notice, to anybody, if there's going to be a hearing about them, so that they are aware of it, and they know that they have a right to be there."
"That did not happen here," says Lobato. "They knew he was with us. They had an address, they had all of our phone numbers" -- yet neither Chenoweth nor his advocates were notified of the hearing, or invited to attend. The next day, however, says Lobato, "They notified him that they were the guardian and wanted him to return to Poplar Grove immediately."
Thus began a protracted battle involving legal proceedings, conflicting official statements, grass-roots advocacy and civil disobedience.
Determined to hold onto the freedom he had attained, Chenoweth refused to comply with the court order. Rather than return to institutional imprisonment, Chenoweth essentially went into hiding. Even most of his closest supporters don't know where he lives at any given time; they only know that he is safe. He surfaces regularly to share meals and bad jokes with his friends at CCDC.
By law, a person who has been subjected to temporary guardianship has the right to request a follow-up hearing, within 10 days, to contest that decision. Chenoweth's attorney decided to ask first for a change of venue to a different jurisdiction -- Denver County, where he's living now. Social Services argued that Chenoweth is still legally a resident of Poplar Grove, in Adams County, and so his case should remain there. Social Services won that round.
Meanwhile, activists were not content to leave the battle up to the lawyers. Over 30 people with disabilities and allies demonstrated on March 23 in front of the Adams County Social Services building. Carrying signs reading "Real Homes Not Nursing Homes," and "We Demand Self-Determination," and "HIV Is Not a Crime," the protesters marched back and forth in front of the entrance, chanting and distributing leaflets. The building was heavily guarded by police, but six or seven activists, including this writer, managed to get inside to the front lobby. We let it be known that we would stay there until we could meet with Social Services director Dr. Donald Cassata.
No such meeting was granted. Instead, an assistant director named Fred Wolf came downstairs and said he would listen to what we had to say. We left the building. Everyone assembled in the driveway outside. There, CCDC's executive director, Julie Reiskin, and board member Mark Simon confronted Wolf with the outrageous facts of Chenoweth's case. Simon explained the many ways in which Adams County had overstepped its authority and misused Colorado's adult protection laws. Finally Reiskin presented the group's demands: that Victor Montoya be replaced by "someone committed to independent living, someone who understands that anyone can live in the community with the proper supports"; that all Social Services staff receive training in disability rights and independent living; that Jerry Chenoweth be given a letter of apology; and that Adams County pay Chenoweth's legal fees.
After hearing the advocates' demands, Wolf made a noncommital statement about looking into the issues. He then disappeared into the building.
Angered at this non-response, demonstrators clustered around the building's doors and began blocking foot traffic. More police arrived. For several hours, the protest became a standoff: Police wouldn't let any of us in the building, and so we wouldn't let anyone else in or out of the building -- at least not without a struggle.
Ultimately, four protesters were arrested. They were driven to the police station and given summonses, charged with interfering with government business.
A handful of protesters returned again the following Monday, March 26. Their tenacity paid off: A meeting was arranged between Social Services director Cassata, CCDC director Reiskin, and Carrie Lucas, another CCDC staffer.
The meeting did not produce a final resolution, but a rather dubious offer: Adams County officials would reconsider their position if Chenoweth would agree to undergo a neuropsychiatric evaluation. At this time, Chenoweth has not decided whether to comply with this request. As Lobato points out, such an evaluation may not be relevant to independent living, because it may not consider Chenoweth's "functional capacity -- things like can he cook, balance a checkbook." Besides, there's no guarantee that Adams County will reverse its position, regardless of the results of an assessment.
Besides, there seems to be plenty of evidence supporting Chenoweth's ability to live independently. For one thing, he's doing so right now -- and under circumstances that are far from ideal: Because he has to stay in hiding, he can't yet get an apartment or in-home support services. (When he tried to apply for Home and Community-Based Services [HCBS], to assist with homemaking, the HCBS worker didn't show up. Instead Montoya came to the address which Chenoweth provided, accompanied by police. Fortunately, Chenoweth was not present, and managed to evade capture one more time.)
Supporting evidence can be found even in the nursing home's own records. Lobato has seen and copied documents from Poplar Grove Care Center, showing Chenoweth's ongoing efforts to leave with the Center's blessing. In September 2000, Chenoweth placed a call to a nursing home ombudsman, telling her he wanted to move out. The ombudsman contacted Poplar Grove, urging staff to work with Chenoweth to help him prepare to leave. Nursing home staff administered a safety study, which Lobato says, Chenoweth "passed with flying colors." Records also noted that he was "alert and oriented times three" -- medical lingo meaning that a person is aware of time, place and people. An Adams County home health agency contacted the nursing home around the same time, offering to work with them to facilitate Chenoweth's discharge, but there was apparently no follow-through by Poplar Grove staff.
Why would Adams County Social Services expend so much energy and staff time trying to prove Jerry Chenoweth incompetent, and attempting to force him back into an institution? Victor Montoya won't answer that question, but the other actors in this drama can speculate on some reasons.
Homophobia could be one factor, says Lobato. After all, Chenoweth is open about being a gay man with HIV.
Or, adds Lobato, the advocacy group could be the real target. "Maybe somehow they're coming after CCDC because we do these prison releases all the time," he says, "and they're trying to flex some political muscle to make us back off."
Perhaps it's more personal, a career bureaucrat feeling offended by Chenoweth's presumptuousness in trying to run his own life. At the case conference back in February, Lobato recalls, he and the other advocates reminded everyone present that Chenoweth was responsible for himself, and could leave Poplar Grove at any time, with no one's permission. "I think Montoya got a little pissed at that statement, and got a court order to say he can't," says Lobato.
Chenoweth has his own theory about why his right to live free is being attacked: "Because the nursing home gets $3,400 dollars a month from the government for keeping me there."
August, 2001: UPDATE
Jerry Chenoweth is now living independently in an apartment that he shares with a friend. Charges were dropped against the four activists arrested for demonstrating at Adams County Social Services. According to protester Julie Reiskin, director of the Colorado Cross-Disability Coalition, the action helped bring Chenoweth's situation to a head, and ultimately to resolve it. After the arrests, says Reiskin, "all of a sudden their 'genuine concern' about his welfare went away and they sent us a note agreeing to stop harrassing him."
In place of the County, the court appointed CCDC organizer Debbie Lane to be Chenoweth's new guardian. "Jerry doesn't need a guardian any more than I do," says Lane. "I'm only keeping the guardianship so that if someone does try to do this crap again, I already have the authority to put a stop to it."
Aided by CCDC, Chenoweth filed an Olmstead complaint with the state of Colorado. Reiskin said she received "a bullshit response." She hopes to find an attorney to sue Adams County and Poplar Grove Care Center, the nursing home where Chenoweth lived until his escape earlier this year, for false imprisonment, Medicaid fraud and neglect.
-- Laura Hershey
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