One hundred and thirty-nine Coloradans under the age of 65 who live with developmental disabilities are being warehoused in privately owned nursing homes throughout the state in violation of the Americans With Disabilities Act.
Lawmakers have been alerted to the problem since 2010, when the Colorado Department of Health Policy and Financing (HCPF) released a report on institutionalization in response to a U.S. Supreme Court decision involving a case called Olmstead vs L.C out of Georgia. The Court ruled, in accordance with the ADA, that the “unnecessary segregation of individuals with disabilities in institutions is a form of discrimination based on disability.”
Two governors and two executive orders later, Colorado’s numbers are down about half from 275, but critics say progress isn’t coming nearly fast enough. Advocates say officials don’t seem to feel any urgency but that young- and middle-aged nursing home residents lament that their lives are slipping away in the months and years they’ve been isolated from peers and cut off from the regular rhythms of daily life.
There’s often a “common theme” in the way bureaucrats deal with developmentally disabled clients, says Randy Chapman, director at the Legal Center for People with Disabilities and Older People, a federally funded law office that watchdogs nursing facilities and other institutions in Colorado. “These folks are viewed as having a place to be, as having ‘three hots and a cot’– but there’s not really the recognition that they’re being inappropriately institutionalized.”
When reviewing the state report in 2010, Chapman was astonished to find that, in addition to the 275 Coloradans institutionalized for developmental disabilities, there were almost 2,000 others institutionalized for mental illness. Of those, the majority are on Medicaid and a third are younger than 65 years old.
“We have no reason to believe that folks in nursing homes, without active monitoring, are free from abuse and neglect,” says Chapman. “Unfortunately, community and advocacy programs haven’t been targeting them because they have their hands full… Meanwhile, the people the Olmstead case was supposed to protect are being institutionalized and ignored.”
Colorado currently houses more people with developmental disabilities and mental illness in nursing homes than in all state-run facilities combined. Nationally, some 200,000 Americans under 65 live in nursing homes, accounting for 16 pecent of the total nursing home population.
Despite national and local efforts following the Olmstead decision, a July report prepared for the U.S. Senate found that “the population of individuals with disabilities under 65 in nursing homes actually increased between 2008 and 2012.”
Lorez Meinhold, who runs the Community Partnership office at HCPF, says her department is aware of the problem and is working on addressing it. She noted that the state launched the Colorado Choice Transitions program in March, mobilizing extra federal grant funding. “CCT is a $22 million, five-year grant initiative that is expected to move approximately 490 Medicaid clients from nursing homes into home and community-based settings,” reads a release from HCPF.
Meinhold notes that, as a result of the 2010 Colorado Olmstead recommendations, new nursing home residents are being asked if they would like to speak with someone about options tied to living in housing that’s more integrated with the community.
But the new policy has not been applied in every case.
Beth Will is one of many who fell through the cracks. For almost 30 years, Will – who has a brain disability — lived with support in an apartment in Glenwood Springs. She worked three jobs, one for 14 years. She has been with her common-law husband, Reggie Jaramillo, for 25 years, a decade of which they have lived together.
After being hospitalized with renal failure and severe cellulitis in 2011 and with her partner also ill, Will was discharged to a nursing facility to recover. Just over two months later, her physician noted that she was healthy enough to receive services in a group home. But in the system’s eyes, it was already too late.
“Reggie and I went in together,” Will explained of the couple’s admittance to a nursing home in Glenwood. “My Reggie, love of my life, love of my entire being, he got out in under 60 days, got his services outside. But I didn’t get out in time. I lost my services. Here I was supposed to be out in two weeks like Reggie, but I ended up in the nursing home for a year.”
For Will, who is 49 and used to a more independent life, it was a very long year. Once the staff at her nursing facility discovered that she liked grilled cheese, they served it to her for breakfast, lunch and dinner.
“Sometimes they would bring burned grilled cheese, I’d get upset, and everybody thought I was just being crazy,” Will says. “I take medication and usually I’d have to wait a long time. It could be as late as two or three in the morning when they would bring me my medicine… I’d be laying there, pushing the caller button for hours.”
Will had lost the Medicaid waiver that entitled her to receive long-term care in a community setting. Accustomed to self-advocacy, she began to call everyone from her former providers at Mountain Valley Developmental Services to independent advocates, and even service coordinators based four hours away in Denver.
Will says each of those phone conversations began like this: “Hi, this is Beth, How are you? Save me, save me, save me! Oh please, I’ll never say another bad thing. I’ll never do another bad thing. Oh please, get me out.”
Jennifer Shook, who advocated for Will on behalf of the Legal Center, says that medical professionals did not clear the long-term stint in a nursing home with Will herself. “The problem is that other options weren’t provided,” Shook says. “They just decided.”
Days turn to years
Will was not alone in that experience. Many people living with disability or chronic illness become sick and find that their treatment results in extended institutionalization.
Jennifer Blankenship, 52, lived independently since she was diagnosed with primary progressive multiple sclerosis in 1984. A series of chronic urinary tract infections landed her in the hospital in 2011, followed by nearly two years living in a nursing home in Lakewood.
“Institutions are dehumanizing,” she says. “You completely lose your identity. You give away all of your power. I was on so many meds the whole time I was there — six narcotics and valium.”
Blankenship fought for over a year to get released from Mapleton Care Center. She is sharing an apartment in Broomfield with her close friend and caregiver, Chris Anderson. Now that she is living independently, Blankenship notes that she takes only one aspirin a day. She feels like she has finally awoken after a long and troubled sleep.
“People more or less go to nursing homes to die, and I wasn’t ready,” she says. “No one has a clue what it’s like. Even the people who work there have no idea. They get to go home on the weekends. The weekends felt like years for us.”
Although Blankenship and Will were among dozens of Coloradans under 65 who managed to finally move out of nursing homes, many more have grown too accustomed to nursing home settings to consider leaving.
Since 2010, the Legal Center has visited more than 30 nursing facilities in the state asking young residents whether they want to live.
“We have to remember we’re complete strangers coming into their [nursing] homes and asking if they’re happy,” says Shook. “In some cases they’ve been in a nursing home for something like 25 years. The staff are their family. The idea of being out, of not having that structure, is really scary. In some cases they don’t know what their options are. In others, they can’t imagine not being there.”
A ‘big family’
Donald Nagel, 56, has been living in a Cottonwood Care Center, a nursing home in Brighton, for just over a year. It’s the latest in a long line of similar facilities from which he bounced throughout the state over the course of three years after several ruptured disks in his spine landed him in a wheelchair.
Nagel remembers times when he smoked three packs of cigarettes a day washed down with three fifths of Jack Daniels. Now he’s down to a strict regimen of six cigarettes smoked during six trips to the nursing home’s shaded entryway. Those smoking breaks, and the trips back and forth down the long hall to his room, make up the rhythm of his days.
Cottonwood Care Center, Nagel explained, is by far the best of any nursing home he’s lived in. He receives regular physical therapy for his back and vows to some day walk away from his wheelchair. Though he wouldn’t mind living in an apartment in Brighton, a town he’s come to like, Nagel doesn’t plan on leaving the comforts and services of the care center any time soon.
“I like it a lot here,” he says. “These people have done a hell of a lot more for me than anyone else has. Yes, it’s humanizing. Yes, we’re a big family.”
Nagel has found a role in that family. Full-blooded Irish, he loves to sing ballads to fellow residents. We sat in the care center’s privacy room (an unusual and much-appreciated feature, according to Nagel) while he sang softly to me.
Strangers came and tried to teach us their ways
they scorned us for being what we are.
Well they might as well go chasing after moonbeams
or light a penny candle from a star.
“There’s things I’ve done for people here that I normally don’t do for other people,” Nagel says. “One of the older residents from the other unit asked me to fix his pocket radio. I had it fixed in five minutes. He wanted to pay me but I said no, not possible.”
Some young and middle-aged residents stay in nursing because the discharge process is often arduous and confusing. Nagel, for his part, stays because he has found here a sense of belonging and purpose that he would miss living on his own.
Despite evaluation statistics showing that a majority of young people admitted to nursing facilities say they hope to leave, the vast majority ultimately choose to stay. Blankenship and Will were two of only a handful of Coloradans to accept the Legal Center’s offer to help find housing outside their nursing homes.
In Will’s case, the state continued to deny her funding months after she was approved to regain her community-based services. Ultimately her case’s managing attorney, Bill Higgins, wrote a long letter outlining the state’s violations of the Olmstead ruling and the Americans With Disabilities Act. A month later, Will was discharged.
For both Blankenship and Will, the transition back into the community with help from the Legal Center and their own Medicaid-funded care providers took about a year of bureaucratic red tape. Both are painfully aware that others, disempowered and often medicated like zombies, are still warehoused in facilities meant for residents many decades older..
“At the end I was terrified,” Blankenship says of the seemingly interminable weeks when her release from the nursing home started to seem real. “It felt like even one more hour in there and I wouldn’t survive.”
It has been only a handful of months that Blankenship has spent in her sunny new apartment in Broomfield. To her, the time has passed so quickly that it seems like only a handful of days. Life, she says, is so much more sweet, bright and full on the outside than the inside.
“Even a banana from the market is so fresh and so flavorful,” Blankenship sighed. “The food at the nursing home is bought in bulk so truly it all tasted like pudding.”
Breaking out of institutionalization has in many ways given Blankenship her life back. She is living like a woman her age – in her 50s – rather than someone of her mother’s generation waiting for death. She pauses sometimes, fighting back tears, as she describes the joy of occupying a world of renewed hope and life, including her new kitten, Monster, who is somersaulting on the couch beside her.
“My favorite thing about living here?” Blankenship laughed, beaming as she looked around her new home. “The potential.”
[Top image: Don Nagel at his nursing home in Brighton, Colorado. By Tessa Cheek. ]
Edit note: The video accompanying this story is intended to offer a fuller portrait of Jennifer Blankenship and the views expressed within are her own.