In October 2020, 68-year-old Lisa Oakley went to the emergency room at Memorial Hospital in Craig for elevated blood sugar and complications with her diabetes. In the past, she would get her levels under control and go home, but this time was different.
She was struggling with bladder issues and needed a wheelchair instead of the walker she had been using. Her doctor recommended she go into a long-term care facility. She was connected with Cori Martin-Crawford, a care-coordinator at the hospital.
Some of the facilities that responded denied Oakley because of COVID-19 restrictions, others because they didn’t accept Medicaid for long-term care or the facility was strictly non-smoking, Oakley’s one vice that she refuses to give up.
“When I first started reaching out to facilities, it was pretty easy to write off their non-responsive as being because every facility was sort of shut down or restricted because of COVID,” Martin-Crawford said. “But once the facility started being able to review her referral and either having a mix of responses, ranging from very vague or not responding at all to the more assertively like, ‘We can’t care for her here,’ it felt very clear to me that they were discriminating against Lisa.”
She would screen facilities and ask if the facility had open rooms, accepted Medicaid and allowed smoking, when the facility answered yes to all three, then she would send the referral. Oakley was still denied and often Martin-Crawford wasn’t given a reason or the facility would just stop responding to her inquiries. Oakley said she knows why.
“I was turned down by about 60 facilities because I’m transgender,” Oakley said.
The number of LGBTQ+ adults needing assisted living is soon expected to double. But some facilities aren’t ready to accommodate them.
By 2030, the number of LGBTQ+ older adults entering assisted living and skilled nursing facilities is expected to double to 3 million in the U.S. But not all facilities are ready to accept and accommodate these adults, leaving them vulnerable to housing discrimination and instability.
LGBTQ+ older adults are at higher risk for mental health issues, disabilities and to be low-income and on Medicaid. LGBTQ+ seniors are also less likely to have family support to advocate for them when living in an assisted living or skilled nursing facility.
“I was surprised at the lack of training that nursing home facilities have had,” Oakley said. “The one that I wanted to go to was up in Craig. And they said, I’d have to room with a guy. Well, I’m sorry, I’m not going to room with a guy.”
Sandrock Ridge in Craig had open rooms when Martin-Crawford was trying to place Oakley and it was the closest facility to where Oakley has lived for the past 30 years. According to notes in a spreadsheet Martin-Crawford kept while she was trying to place Oakley, when talking to admissions staff she was told “the patient would require a private room because she still has her boy parts and cannot be placed with a woman.”
Sandrock Ridge did not respond to multiple requests for comment from CPR News.
“It made me realize how much power that facility holds to be able to just deny somebody because of whatever reason they come up with,” Martin-Crawford said.
The hospital coordinator has had difficulty finding care facilities for some patients in the past. But this felt different.
Martin-Crawford worked in Baltimore before moving to Colorado. She’d had difficult patients to place in the past, like patients who sold drugs on facility grounds, but she was always able to find a place for them.
“It was like ultimately there was an understanding among facilities that this is how we function as a hospital system,” she said, “because if they don’t accept patients into their facility, the hospital doesn’t have beds to treat the sick people that need to be treated.”
Martin-Crawford would spend months trying to find a facility that would take Oakley. She was asked invasive questions about the surgeries Oakley had undergone and told her that Oakley needed her own room, but they couldn’t accommodate that because Medicaid wouldn’t reimburse for a private room.
Finally, after months of searching, Martin-Crawford got connected with a facility in Grand Junction through contacts at SAGE, an elder LGBTQ+ advocacy and services organization, and The Center on Colfax.
In February, Oakley moved into Eagle Ridge of Grand Valley in Grand Junction.
“I have a saying that if you don’t take time to read the book and just judge a cover, you might miss a good story or a good friendship,” Oakley said. “I love all the staff down here. They love me.”
Staff training, organizational changes around policies and inclusive processes make a difference.
Eagle Ridge is a facility owned by Vivage, which has facilities across the state. Vivage has done training to be LGBTQ+ affirmative through a program called Project Visibility offered by SAGE.
“We always look at anyone entering our communities as very person centered in what is going to be the right fit, the right place for that particular person,” said Cynthia Coenen, chief clinical officer. “And so we literally look at the overall person before we look at any placement.”
The training offered by SAGE covers intensive staff trainings for facilities, making organizational changes like updating non-discrimination or visitation policies and ensuring the facilitiy is inclusive like updating bathrooms to be gender neutral.
“At the end of that process is when you would put your rainbow flag up,” said Tim Johnston, senior education advisor at SAGE, “because if you do it earlier, you’re essentially setting a trap for somebody to feel safe when in fact it is not a safe environment.”
Around the same time Oakley moved into her new home in Grand Junction, she was connected with Lambda Legal, which specializes in civil rights cases for LGBTQ+ people. Karen Loewy represented Oakley and sent a letter to Sandrock Ridge explaining the state and federal laws they broke by denying Oakley admission and demanded the facility reevaluate Oakley for admission.
“The sort of end result here is that had Sandrock Ridge not denied her placement in the first place, when Cori initially requested admission for her, her condition would have been quite different than at the time,” Loewy said. “She should have been able to access all of the care that she needed in the community that she loved and deserves to be the rest of her days.”
During the summer, Loewy and Sandrock Ridge went back and forth via email as Oakley’s health continued to decline. She has gangrene in both of her feet, a complication of diabetes. She’s had some of her toes amputated on one foot, but as her health stands she was warned that another surgery could be deadly.
“I’m fixing to lose a toe, but I have a choice of quality of life or going to a table and have a 20 percent chance of coming off the table alive,” Oakley said. “So I chose quality of life because there’s about a two, three week stay in the hospital. So I’m not too crazy about that.”
“Hopefully, other transgender people will be able to get the help that they need on getting long-term care.”
Sandrock Ridge sent someone from their facility to evaluate Oakley for admission in early May. That person told Oakley that she would likely have to travel from the facility in Craig back to Grand Junction to see a urologist, but that she was accepted to the facility. Oakley doesn’t want to have to travel back and forth, nor does the facility offer transportation for that kind of medical trip. Ultimately, she and her care team decided it was best for her to stay in Grand Junction. She dropped the lawsuit.
Oakley said her doctors aren’t sure exactly how long she can live with the gangrene in her foot, but she’s at peace with her decision to not operate.
“I think that she’s very much at peace, and she doesn’t want to be pushed around or she doesn’t want significant interventions. She wants to eat chocolate when she wants to eat chocolate,” Martin-Crawford said. “And I don’t know what this facility might come up with, but the thought of Lisa being alone in her final days, moments — just she’s deserving of so much more than that.”
On a warm day this summer, Oakley sat in her wheelchair and drank a Diet Pepsi from an insulated cup. She plans to go fishing with the help of some new friends she’s made, and she’s happy that her wheelchair allows her to go off of Eagle Ridge’s campus to go to the nearby Dollar Store and restaurants. She’s happy.
“I’ve lived 68 years. I’ve done a lot of stuff that I shouldn’t have done, but I’m glad I did it for the experience. I’ve lived a full life,” she said.
After living on the brink of homelessness, stranded at the hospital and trying to find a place to live, for the better part of a year, Oakley has a place to call home that accepts her and she has access to the care that she needs. When she looks back on the last eight months, she’s dismayed by the lack of training and misunderstanding of trans people, but she’s optimistic.
“Hopefully other transgender people will be able to get the help that they need on getting long-term care,” she said.
Martin-Crawford left Memorial Hospital in Craig. She said Oakley’s case was the hardest case she’s ever had. Sometimes she wonders if they spent too much time fighting the system when all Oakley wanted to do was get back to fishing.
“Seeing Lisa really know her worth and know that she didn’t need to change anything about herself to be deserving of care that treated her with dignity and really own that is so important,” she said, “because everybody tried to tell her otherwise.”
This article was originally published in Colorado Public Radio on October 26, 2021.
