SYRACUSE — When Denise Vigil-Thielfoldt learned of a COVID-19 outbreak at the Roy care facility where her cousin lived, she wasn’t sure what to do.
Would she be allowed to remove him from the facility? If he’d been exposed, and she brought him home, how much of a danger would this be to her family? And how would she provide for his care, when she has a full-time job of her own?
Her cousin, Ron Vigil, is at high risk for COVID-19 complications. As are many residents in long-term care facilities like the one where Vigil lived — Heritage Park Healthcare and Rehabilitative Services, in Roy — where 17% of residents tested positive for the virus.
Vigil has cerebral palsy and has been in state care since he was four years old, Vigil-Thielfoldt said. He also has dementia and a terminal illness, but his treatment is currently going very well.
“This is a huge risk to my family, and I would love nothing more (than) to bring him home, but I’m scared,” she said, describing the time she waited for his COVID-19 test results. “Do I do it (remove him) as soon as I find out? Do I have time? Do I need to wait until another test is done?”
Luckily, Vigil-Thielfoldt has some friends who are doctors, so she reached out to them for help.
“The other doctors I talked to said ‘No, you have a window, and as soon as (the test is) negative, and you find out it’s negative, you get him out,’” she recalls them telling her.
Once she knew what these doctors recommended, Vigil-Thielfoldt still wasn’t sure if there were laws or restrictions that would keep her from removing Vigil from the facility while residents were quarantined. She said she felt pressure from Heritage Park staff to keep him there, so she reached out to an ombudsman at Weber Human Services, who assured her that she “had every right” to remove him from the facility, Vigil-Thielfoldt said.
A Utah long-term care ombudsman “seeks resolution of problems and advocates for the rights of residents in facilities such as skilled nursing homes/assisted living (facilities) to ensure and enhance the quality of life and care of residents,” according to Nobu Iizuka, director of Weber Human Services Area Agency on Aging. “Each Area Agency on Aging has its own certified LTC ombudsman.”
According to Jeff Fletcher, administrator at Heritage Park, “discharge out of the facility is an available option” for residents who test negative for the illness, “and we have advised our residents and family members of this as well,” he said in an email.
For residents who test positive for COVID-19, Fletcher said “resident and family choice is not only relevant, but is the deciding factor” in where a resident is treated.
On May 7, Vigil-Thielfoldt learned that Vigil tested negative for COVID-19, so she moved quickly to bring him home to her Syracuse residence — even though she didn’t have all the supplies she needed and wasn’t sure how she’d care for him.
“For me, I didn’t need to know that ... things were in place first,” she said. “It was more important for me to get him out, and I just knew somehow it was going to work itself out.”
Everything did work itself out, perhaps even better than Vigil-Thielfoldt could have anticipated — but she says that was only the case because she’s gotten a lot of help.
When she knew she was bringing Vigil home, her first call was his doctor’s office.
Vigil-Thielfoldt told them, “I need your help. How can you help me? I don’t know what to do. I’m told I need doctor’s orders,” she said. “... They’re like ‘You know what? We want him home. Whatever you need — what do you need?’”
Vigil-Thielfoldt told them she needed a medical bed and shower equipment, among other things. Staff at the doctor’s office also suggested a variety of supplies like hand sanitizer and face masks that Vigil-Thielbold hadn’t realized she would need.
Vigil came home with her, and hung out in his wheelchair while they waited for supplies and equipment to arrive. Within seven hours, they had everything they needed, according to Vigil-Thielfoldt.
“Things started showing up, boxes started appearing,” she said. “It was on.”
These supplies were paid for in large part by Vigil’s insurance, a Medicaid Plan through Select Health, the insurance division of Intermountain Healthcare. Intermountain also provided a variety of other resources, Vigil-Thielfoldt said. Her cousin has a caseworker through a program called ICCT — Intermountain Community Care Team.
ICCT “helps patients with complex medical needs find ways to overcome problems that may be keeping them from getting the care they need,” according to information on the Intermountain Healthcare website. Vigil’s ICCT caseworker assists with anything they need — like applying for Medicare. He also receives services through Intermountain’s Palliative Care and Homecare programs, Vigil-Thielfoldt said.
In addition, Vigil has an existing caseworker through the state’s Division of Services for People with Disabilities that connected Vigil-Thielfold to a variety of needed supplies. She went to pick up the supplies, and staff knew him by name, she said.
“That made my heart smile,” she said.
Vigil’s state caseworker told Vigil-Thielfoldt about a state program called SAS, Self Administered Care. Because Vigil is on Medicaid, the program pays for a caretaker who cares for Vigil at home for 40 hours a week.
They had a stroke of good luck when they found a caretaker, Alicia Springfield, who had worked with Ron for 16 years when he participated in a daytime program.
She already knew his quirks and preferences, Vigil-Thielfoldt says.
Vigil loves to joke, Springfield says, and to build things with popsicle sticks.
Springfield noticed a big difference since Vigil moved into Vigil-Thielfoldt’s home — the first time he’s lived with a family since he was a small child. He’s the happiest that Springfield has ever seen him, she said, and he has fewer behavioral problems.
“It didn’t feel so good,” Vigil said about his time in Heritage Park. Being at home with Vigil-Thielfoldt and Springfield, on the other hand, “feels good,” he said.
“It blesses my heart,” Springfield said, about watching Vigil thrive and knowing he’s safe.
Vigil-Thielfoldt says that she likely wouldn’t have found out about many of these resources if she hadn’t needed to pull him from Heritage Park.
“There’s so many things that are available and programs I didn’t even know existed,” she said.
These services aren’t available to everyone, Vigil-Thielfoldt said. Every circumstance is different — but some who are facing difficult decisions regarding the care of loved ones my not know what’s available to them.
“In talking to a couple different people, they ... said, ‘I wish I would have known these things existed,’” she said. “’I would have acted sooner.’”