Louise Apodaca was done waiting. For months she had been pleading with case managers, social workers, disability advocates, care givers, anyone who would listen that she didn’t need or want to be in a nursing home any longer. What was supposed to have been temporary had stretched into years.
She wanted to go home.
What followed is a harrowing glimpse of what can happen when the state’s system, meant to help Colorado’s physically disabled transition out of institutional settings, fails.
In fact, Colorado’s program is alleged to be so fraught with inaction and dysfunction that after years of investigation and warning, the federal government has now sued the state.
At age 68 Apodaca had a long list of medical problems, including congestive heart failure, kidney stones, chronic obstructive pulmonary disease, leg hematomas, and arthritis. She was incontinent and needed oxygen and a wheelchair.
But still, she was told her care could be handled by daytime and nighttime home health aides and other available state and community programs. She knew she would be happier at home and ultimately probably healthier.
She remembers her doctor being surprised during an exam to find her still at the nursing home. “Why are you still here?” she said he asked.
But officialdom kept stalling, telling her to be patient. Just a few more weeks to get a home care plan ready. Then, just a few more.
On July 31, fed up, she left St. Paul Health Center, a 150-bed nursing home in Denver. Her son, Bentura Carrillo, drove her to the one-bedroom Denver Housing Authority apartment where she had lived on and off for a decade.
She insists she was cleared to go home and told her home health care was finally in place — assertions others now dispute, saying she was warned she shouldn’t leave.
When she got to her third-floor apartment, she was surprised to find no help was there. She told her son, though, it was OK for him to go back to work, reassuring him that surely someone was on the way. Day turned to night and then day again. For nearly 48 hours she said she remained alone, immobile in her wheelchair, with nothing to eat, her cellphone out of power, and her condition deteriorating as she sat soaked in urine and feces.
When, at last, her son burst in on Aug. 2, panicked because he had been unable to reach her by cellphone, he was horrified by what he saw. “Mom, what the (expletive)?” she said he bellowed, then broke down in tears, “Where is everybody?”
Nursing home cost nearly triple
On Sept. 29 the Justice Department took the extraordinary step of filing suit against the state of Colorado, alleging it violated the Americans with Disabilities Act in hundreds of cases like that of Apodaca.
“Thousands of Coloradans with physical disabilities are unnecessarily segregated or at risk of being segregated in nursing facilities due to the State’s failure to make community services available to them” the federal lawsuit alleged.
Citing the 1999 U.S. Supreme Court’s landmark ruling in Olmstead v. L.C., the lawsuit said that if disabled people languish in an institutional setting when a less restrictive option is available, it is discrimination.
“People with disabilities wanted to live in the community,” the lawsuit said, “but were stuck in Colorado nursing facilities because State policies and practices make it hard for them to move back to their home.”
And the cost is nearly triple.
The average yearly Medicaid cost per resident at a nursing facility is roughly $84,000, according to the lawsuit, citing Colorado’s own numbers. By contrast, community-based care for a disabled person costs Medicaid, on average, about $30,000 per year, the lawsuit said.
In Colorado, federal Medicaid money is administered by the Colorado Department of Health Care Policy & Financing. If an eligible disabled person lives in a nursing home the cost of their care is paid directly to the facility at a daily rate. For those who live in the community or at home, they, too, can receive needed care from multiple providers whose services are typically coordinated by case management agencies. Those providers then bill Medicaid through the state for each service.
The state’s Department of Health Care Policy & Financing said in a statement it was “disappointed” in the Justice Department’s decision to file suit, contending the state has “maintained a deep commitment to continue building a system that ensures people with disabilities have the option to live and receive care in the community.”
Gov. Jared Polis’ office declined to comment on pending litigation.
Unnecessary confinement ‘common’
There are currently nearly 15,000 people living in Colorado’s 218 nursing facilities, according to KFF, a national nonprofit health care policy organization, using the most recent federal Centers for Medicare & Medicaid Services data.
In its lawsuit, the Justice Department argues that many of those with physical disabilities — even if requiring extensive help to bathe, eat, breathe, or use the toilet — could get that care from existing community-based programs.
Nursing homes are restrictive by design for safety. But those who live in them unnecessarily “tend to be subject to schedules and routines dictated by the needs of the institutions, leaving residents with little to no control over their daily activities,” the lawsuit said.
Julie Reiskin, co-executive director of Colorado Cross-Disability Coalition, said that when a disabled person is in a restrictive environment for a long stretch of time, both physical and cognitive functions decline.
A kind of post-traumatic stress disorder can kick in. “You lose problem solving ability,” she said.
As far back as November 2018, the Justice Department’s Civil Rights Division notified Colorado leaders it had opened an investigation in response to complaints of violations of the ADA.
More than three years later, on March 3, 2022, the federal government sent the governor a letter saying it had concluded Colorado was, in fact, breaking the law.
The 15-page letter concluded that such unnecessary confinement “is common in Colorado.”
The federal government chided the state for being too slow and making it too difficult for disabled people to move out of nursing homes or avoid them altogether. It recommended that Colorado programs, both state-run and those with which it contracts, do better at informing people of their options, expand access to care, and improve the transition process.
For instance, between 2013, when Colorado began its community transition program, through the end of 2019, only 269 Coloradans with physical disabilities moved from nursing homes to the community, the letter said. Further, Colorado ranked 30th out of the 44 states receiving federal grants to transition people out institutions.
At the time, a spokesperson for the governor said in a statement: “Gov. Polis is hopeful that this development will accelerate his efforts to make Colorado the best state for seniors and people with disabilities.”
The Colorado Department of Health Care Policy similarly said last year it would compare the federal findings with its own and look for ways to improve. More recently that agency has said between 2020 and 2022, 794 people were able to move out of nursing homes.
But apparently that was not enough, prompting September legal action. The state has until Dec. 1 to file its response in federal court.
It is unclear what would happen if the federal court rules against Colorado as the lawsuit only asks that Colorado stop discriminating against affected people, and “take steps as may be necessary to prevent the recurrence of any discriminatory conduct in the future.”
It is equally unclear what would happen to Coloradans like Apadoca should Colorado prevail.
A review of recent federal lawsuits alleging ADA violations found that the lawsuit against Colorado is rare, although some states have been sued for keeping the mentally ill or disabled children institutionalized in nursing facilities.
In July, after a decade of litigation, the U.S. District Court for the Southern District of Florida found that state had illegally segregated children with complex medical needs in nursing homes.
The lawsuit against Colorado surprised Doug Farmer, president and CEO of the Colorado Health Care Association, a lobbying group that represents nursing homes. “I honestly thought that the way the state responded (to the 2022 letter) was more substantial than what I thought they could do,” he said in an interview.
He added that the lawsuit blames the state for problems of which it has no control such as a lack of affordable housing for disabled people and staffing shortages in home health care.
“It’s important to acknowledge that we’re operating within a complex system that does not always move as swiftly as it should,” said Sandy Stone, a spokesperson for Rocky Mountain Human Services, which handles case management for people wanting to move home.
“The community transition system is a fragmented one,” Stone said in a statement. “Case management agencies like RMHS have a role but there are also state and county agencies, long-term care facilities, and other healthcare providers involved. The necessary coordination among these entities can often times slow things down.”
But advocates for Colorado’s disabled population aren’t buying it. They say that coordination is abysmal and lacks urgency and accountability.
“The DOJ is correct,” said Donna Sablan, director of Medicaid appeals and eligibility for Colorado Cross-Disability Coalition.
Apodaca managing at home
Louise Apodaca is having a good day.
Propped up in bed in her apartment last week, her hair is neatly brushed, and her cheeks have lost the grayish pallor of before. The ever-present cellphone is in her hand, a long lanyard attached so she can fetch it in case it is dropped. Small notebooks in which she tracks phone calls to agencies and the schedules of her home health care workers are nearby. So is the machine feeding oxygen through a tube into her nose.
A sheet is pulled up over her bare chest. “I usually just wear a diaper and a smile,” she says, eyes twinkling.
It has been almost four months since those terrible first few days after leaving the nursing home.
She remains steadfast that she was told care had been arranged.
Sablan, the Cross-Disability Coalition staff member who served as Apodaca’s advocate, remembered it differently. She said Apodaca called her in a panic on Aug. 1, nearly 24 hours after leaving the nursing home. “I’m sitting here in my wheelchair,” she said, “What do I do?”
“Louise,” Sablan said she told her, “You were warned not to leave.”
The two women argued, and Apodaca hung up. Sablan said she then tried to find emergency help but by the time she tried to call her back, Apodaca’s phone had run out of power.
When her son found her the next day, on Aug. 2, he cleaned her, changed her clothes, and helped her from wheelchair to bed. He charged her phone and went to get her favorite takeout, Taco Bell. For the next few days her son and one of her friends helped care for her. She then began working the phone, trying to cobble together at-home care.
In those first few days, when Sablan could reach her again, she suggested Apodaca call an ambulance. Apodaca refused. She said she feared that if she went to a hospital, she would be discharged back into a nursing home, restarting the cycle.
Now, months later, her care is still spotty. “It makes me nuts,” she said last week, “I’m a nervous wreck most of the time.”
Recently she had to argue for more adult diapers because the standard allocation was insufficient. She explained if she was not changed frequently enough she is in danger of skin sores. She won that round with her doctor’s help and got extras supplies.
Mark Bedinger, the president and CEO of Colavria Hospitality that manages St. Paul Health Center nursing home, said in an email he could not comment of what happened because of patient privacy laws.
Similarly, Stone at Rocky Mountain Human Services, which provided some of the case management, did not directly address what happened. Stone did, however, offer in her emailed statement that the case, as described by The Gazette, was “heartbreaking.”
“We are committed to working with our state and local partners to simplify complicated processes and help identify opportunities to streamline the state’s system so people like Louise can get the home-based care they need when they need it,” Stone wrote in her email.
There is no question that Apodaca’s case was difficult and could have turned tragic. She can be stubborn.
But Reiskin said if Apodaca had not forced the issue, she might still be waiting. “You’ve got to create a crisis to get anything done. There is nothing in the law that says we only have to serve people who are easy.”