By Kristin Jones
Kevin Mooney had spent his career at a bank in Phoenix, Ariz. when he was laid off in 2010. They gave him a lovely crystal statuette to recognize his quarter century of service—before showing him the door.
In his late 50s, Mooney was terrified that he wouldn’t ever be able to find work again. He had enough savings to last about a year.
For a brief period, he moved in with his ex-wife and adult daughter in Boulder, Colo. But that didn’t last.
He began living in his car.
That ended disastrously one night in February 2011, when Boulder police found him there, nearly dead from hypothermia. As a result, both of his legs had to be amputated below the knee.
The assisted living facility in Lafayette, Colo. that Mooney then moved into at the age of 58 was nice enough. He made friends with his fellow residents, most of them decades older than him. It felt like spending time with his grandparents; he loved their stories and their company. But sometimes he wanted to be around younger people, too.
So Mooney became an expert on the bus lines and the light rail schedule. He found that he could go as far south as Manitou Springs to take the Pikes Peak Railroad to the top of the mountain, or as far north as Fort Collins. Boulder was a relatively easy place to navigate in a wheelchair, and he could even take the bus up to the Eldora Mountain ski area in Nederland, just for a change of scenery.
He learned that national and even international travel, though massively inconvenient, was still possible. He visited his daughters in Boston and New York, and his father and brother in England, where Mooney was born. With knee pads, he could pull his wheelchair up and down stairs.
Still, little things at the assisted living facility started to get to him: his laundry abandoned in the washing machine, or no dinner left when he got home late. The way that gossip spread. There was a set time for everything, and everything was done for him. His whole life was organized by the facility. And his friends kept dying of old age or disease.
That was before COVID-19.
The virus arrives
Anyone who knows enough about long-term care facilities could see right away that it would be horrific when the coronavirus reached them.
“When I first heard that the spread of COVID is asymptomatic,” said Bonnie Silva, who oversees long-term care for the Colorado Department of Health Care Policy and Financing, the state Medicaid office, “I put my head down on my desk and cried. How can you control something you can’t see?”
The devastation has been hard to fathom.
Nationwide, more than 120,000 residents and staff in long-term care facilities—including nursing homes and assisted living facilities—have died from the coronavirus. Around 38% of all COVID-19 deaths in the U.S. have been in long-term care facilities, though just 1% of the population lives in them, according to public health data collected by the COVID Tracking Project.
As of Dec. 24, long-term care facility deaths accounted for 39% of all COVID-19 fatalities in Colorado. More than 1,700 residents and staff of long-term care facilities have died since the start of the pandemic.
More are dying every day. Wherever it takes off, COVID-19’s spread in the community lands hardest in these places.
A furious effort to change operations in nursing homes since the spring has saved lives, said Silva. A push to stabilize the workforce, which is low-wage and high-risk. Frequent inspections. Higher Medicaid payment rates. Prioritizing the facilities for the distribution of masks and other protective equipment. Mandated testing.
It’s not enough.
“This pandemic has shed a light on a weakness in our long-term care system—and a longstanding weakness,” said Silva. Infectious diseases have always spread quickly through dense, congregate care facilities, where residents are particularly vulnerable to them: “People close to the industry have always known that, and now the rest of the world has seen it. When the vast majority of the people who have died from COVID reside in these settings, that’s telling.”
The places left by those who have died in nursing homes in Colorado have not been filled, and enrollment has dropped. People are seeking ways to stay at home. The state Medicaid office is helping by ramping up what it calls options counselling—consulting with people leaving hospitals to let them know about the possibility of staying at home and still receiving the care they need, said Silva.
In October 2019, there were 14,219 people living in nursing homes in Colorado, said Silva, adding that the number had long been stable. In October 2020, it was down to 12,784. (The number does not include people in assisted living facilities, where enrollment has also dropped slightly since the beginning of the pandemic, according to data provided by Silva.)
With COVID-19 continuing to spread, it’s still too many people.
“Once people move into a nursing home,” said Silva, “it’s really hard to move them out.”
When COVID-19 hit, Mooney’s facility shut all its residents in their rooms for two weeks, he said. The fear was intense and omnipresent. He was hearing stories from friends in other places where the virus was ripping through.
Most of the largest outbreaks were in skilled nursing facilities, where residents are generally older and sicker. Ten, 15, 25 people dead. But it was spreading through assisted living facilities, too. At a retirement community in Denver where the virus took hold in early April, 48 residents tested positive for COVID-19, and 16 died.
By late spring, it began to look as though Mooney’s facility would escape the worst of it. Yet, not for the first time, Mooney felt trapped.
A movement with a long history
Activists in the disability community had no trouble understanding what the pandemic would mean for people living in congregate housing, either.
The movement for disability rights has strong roots in Denver, where a group of activists formed the Atlantis Community in the 1970s. The group became national pioneers in calling for self-determination for people living with disabilities.
Instead of being warehoused in institutions, its members said, they had a right to join the community. Rather than being excluded by physical and social barriers from participating in society, the constructed world should adapt to them.
Laws and practices have changed a lot in the past 40 years as a result of this activism, and the idea that people with disabilities should be integrated with the community to the greatest extent possible isn’t just accepted—it’s federal law.
It turns out that living in the community is less expensive than institutional care, saving taxpayer money in the long term. It’s also the preference of a large majority of the people who live in nursing homes in the state, according to research from before the COVID-19 pandemic.
Colorado has stepped up its effort to facilitate people leaving nursing homes if they want to. In 2013, the state won a federal grant that allowed Medicaid benefits to follow a person from institutional living to their own residence. And in 2018, as the grant ran out, the state moved to sustain this approach going forward.
For the five years of the grant, Medicaid supported 680 Coloradans transitioning from nursing homes to the community, said Silva. As the program ramped up, these transitions accelerated. Another 268 people moved in 2019 alone.
Still, there are significant barriers that keep people in nursing homes that they would rather not live in. Housing is a huge one, said Silva. As rent has skyrocketed during the last few years, it’s been increasingly hard to find places for people to move into—even with the vouchers provided for the purpose. When people need wheelchair accessibility as well, the odds are truly daunting.
And advocates say there are still too many hurdles and inefficiencies in the Medicaid-assisted transitions. Finding caregivers can be difficult. The transitions can be lonely and overwhelming for people accustomed to living in group settings, while too little care is given to fostering connections outside of institutions.
Above all, the program is overly rigid, advocates say. Requirements that sound reasonable in theory—like having residents talk to options counselors before transitioning out of nursing homes—cause unnecessary delays, they say. Well-intended regulations related to patient privacy have the effect of isolating people from peers in the community.
“Any of us who have ideas always think our ideas are great, and we are usually wrong,” said Julie Reiskin, executive director of the nonprofit Colorado Cross-Disability Coalition. (The coalition is a grantee of The Colorado Trust.) “We need to listen to the people that have a need for assistance and do what they say they need—hence the need for flexibility.”
While the program has worked to be more flexible, there are cut-offs for some of the benefits that Medicaid offers. For instance, not all of the same services are available to Medicaid clients who want to leave assisted living facilities, like Mooney, as are offered to those leaving nursing homes. (Silva said some case management services are not offered to residents of assisted living facilities to avoid duplication, but that her office is considering expanding these services.)
“In any program, especially in programs run by bureaucratic systems, there’s always room for improvement, and always room for people to move faster,” said Anaya Robinson, associate director of Atlantis Community, Inc.
Atlantis, true to its original mission, works through its networks to find people who haven’t considered the possibility that they could live independently. It continues to advocate for the kinds of policy changes that allow it.
Its sister organization Atlantis Community Foundation operates its own apartment units. The crisis of high housing costs convinced it to build a housing complex above its headquarters in downtown Denver, and make it available as accessible, affordable housing.
And by late spring of 2020, with the COVID-19 pandemic already well underway, there was a new idea brewing.
More plans, and more obstacles
Mary Putnam leads the Reciprocity Collective, a Denver-based nonprofit that serves people who are unhoused. The organization’s mission is to build connections among the various nonprofit and business entities serving people experiencing homelessness. She has found the organizations’ work to be frustratingly fragmented.
Putnam spends a lot of time on conference calls. On one such call early in the pandemic, “I was raging,” she said, at emerging plans to put together huge emergency shelters for people experiencing homelessness.
“I was really upset. It went against all the CDC guidelines. … We have real respect for people we work with, we’re not trying to force them into unsafe situations.”
One of the people on the call was Reiskin, who mentioned the parallel problem of people with disabilities who were stranded in long-term care facilities.
They started talking. What if they could train people who were experiencing homelessness to work as live-in caregivers for people leaving long-term care facilities?
Putnam, Reiskin, Robinson of Atlantis and Stephanie Ziegler, former director of cost control at the state Medicaid office, began having regular meetings. A plan formulated to house people together in hotels for a few weeks at a time—both as a way of quarantining and for people to get to know each other. If they got along, they could be paired together in working relationships and possibly in homes.
But the idea was slow to get off the ground. For a while, they couldn’t find funding to cover the hotel stays.
Then there was an obstacle they hadn’t anticipated: It was suddenly very hard to find people who wanted to leave long-term care facilities. Not because they weren’t there. Rather, they were so thoroughly isolated, they were incommunicado.
“Historically, there’s never a shortage of referrals for transitions,” said Robinson. But COVID-19 meant that visitors weren’t allowed in nursing homes. Options counselors from Medicaid weren’t allowed in for face-to-face visits—just virtual ones. Atlantis advocates couldn’t get inside.
Additionally, many of the residents of nursing homes had access only to communal phones—not their own cell phones, which can be expensive. And now the communal areas of many facilities were restricted or cut off.
At a time when a lot of people were experiencing isolation, the solitude of many nursing home residents was extreme.
Sociable and independent and in possession of a cell phone, Mooney was his own kind of workaround to the problem of finding people. He had long ago made himself visible wherever he went.
In his excursions around the state, he had gotten to know other wheelchair users and formed quick bonds of solidarity. One of them was a community organizer with Atlantis, who ran into him one day in June and asked him how he was doing.
“Footloose and fancy free!” Mooney replied. But she wasn’t just chitchatting. She really wanted to know.
“Do you want to stay at assisted living for the rest of your life?” she asked.
“No,” Mooney replied. “If I can get out, I will.”
There was a problem, however. Mooney didn’t fully fit the profile of the person that the group of advocates were looking for in their new pairing program. He didn’t have any real need to quarantine after having been pretty much isolated during the first months of the pandemic, so a hotel stay was unnecessary. (Too bad, said Mooney; “I was looking forward to that.”) He also didn’t need a caregiver.
The advocates had to decide whether they’d disqualify people who didn’t fit their model—the very thing they’d chafed against with Medicaid.
It wasn’t a hard decision. The goal “was always providing a safe space and community for folks who are marginalized by having a disability or experiencing homelessness during the pandemic,” said Putnam.
Mooney moved into his own place in the brand-new Atlantis housing complex on Oct. 20.
The group is hopeful that they can show that there are other ways to pursue these kinds of transitions that speed them in the future. They’re also hoping to forge stronger connections that didn’t previously exist between groups of people with common cause.
“As crazy as it is, there are so many interesting things coming out of the pandemic that are going to instigate changes,” said Ziegler.
So far, just 10 people have started going through their pairing program, either from the disability community or as caregivers who had been experiencing homelessness. One idea, not yet funded, would be to rent a three-bedroom apartment where cohorts could gather and build relationships with each other before moving into their own places, possibly as roommates.
The traditional route through Medicaid has had a slower year than last year. They’ve been hampered, too, by the obstacles to face-to-face communication during the pandemic, said Silva. Still, 190 people transitioned out of nursing homes in the first 11 months of the year.
The fact that so many people have been able to stay out of nursing homes this year has been encouraging to Silva.
“The interesting part will be, how does long-term behavior change? How do we evolve?” said Silva. As the person overseeing nursing homes for the state Medicaid office, she’s laser-focused on improving their care. “I want high-quality nursing homes to be around. But I also want people not to go to them if they can stay in their homes.”
In his old room at the assisted living facility, Mooney’s three elderly neighbors played the Broncos games in surround-sound from each of their rooms. He’s a fan of “real football” (soccer), thanks. Now he’s got privacy, and an end unit with only one neighbor across the hall.
It’s an odd time to move into a new place—especially one like the Atlantis complex, which was designed to enable socializing and foster community. With COVID-19 at its worst, Mooney hasn’t met his new neighbors and he spent the holidays alone. He still has to unpack all of his boxes, and he’s mostly living on TV dinners.
But Mooney is looking forward to his life when all of this is over. He’s planning to go to his granddaughter’s graduation in Boston in the summer, and he’s already got a list in his head of the places in town that televise soccer matches. We met (while wearing masks, at a distance) outside of Union Station in Denver, an easy light rail ride from his home. It was festive despite the pandemic, beside a huge lit-up Christmas tree and a trickle of pedestrians.
Mooney has no regrets about the move.
“I should have done it a long time ago,” he said.