After serving in the military for decades she developed ALS. Now the VA is refusing to pay for care where she lives.

In 2003, Patricia Gallegos Delgado was deployed to Kuwait. In the midst of the chaos of war and camel spiders, she threw a party for Cinco de Mayo. She made flowers out of toilet paper, finding a bit of joy in a difficult time.

More than 20 years later, lying completely paralyzed, she’s still making the best of it. A dream catcher hangs above Pat’s bed and a bowl of candy sits by her door. Each month her son Mario covers her in a festive blanket to match the season. The stream of visitors is constant.

Patricia, who goes by Pat, was diagnosed with amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig’s disease, in 2016. She is now 70 and has lost all mobility. “I still enjoy life,” Pat said, “I never give up on being happy.”

For the last two years, she has required intensive care and lived in a facility that has come to feel like home. But now Pat and her family are caught in a bureaucratic nightmare and fight with the Veteran’s Affairs Salt Lake City Health System and are afraid she will lose their home, health and even visits from loved ones.

Her ALS is considered service-related, which means the Veterans Affairs Salt Lake City Health System pays for her care. Researchers are unsure of exactly what causes ALS, but it is more common among veterans and the government automatically accepts claims.

ALS is fatal and the average life expectancy after diagnosis is two to five years.

In February 2022, Pat stopped breathing and surgeons made a hole in her windpipe (a tracheostomy). She now breathes with the help of a ventilator and can still speak.

After the surgery, Mario and Sara got a list of nursing homes from the VA and consulted with the ALS Association on which one would be best. That’s how Pat landed at NeuroRestorative, a quiet, rustic-themed, facility where many of the patients also have tracheostomy tubes.

Pat didn’t want to leave her house, but it helped that two of her kids and most of her extended family were just a short ten–to fifteen-minute drive away. She was rarely alone.

Her daughter Sara took family medical leave time to help with the transition. Mario spent every day at NeuroRestorative.

At her new home, strangers managed every aspect of Pat’s care and it took time for her to feel comfortable. For weeks, she refused to allow a nurse to give her a shower.

More than two years later, she has surpassed the life expectancy of someone diagnosed with ALS. She cannot move, but she still tells stories and cracks jokes. The staff at NeuroRestorative paint her fingernails, brush her hair back and tie it in a neat bun.

On her 70th birthday, family members flocked to NeuroRestorative and hired a mariachi band to celebrate.

“I love this place,” Pat said, “it’s my home.”

An 80-mile drive

On Jan. 10, Pat got a call from a VA social worker informing her that she would be transferred to a new facility, Heritage Park, in Roy.

The family was stunned. The Roy facility would require the family to drive roughly 80 miles round trip to visit.

“The VA wants to take her 15% survival rate and cut it down further by ignoring her mental health,” Mario wrote in a letter to several VA staff involved with the case. “Perhaps it was an inconvenience [that] she survived so long. Maybe she was perceived as the type of bill better to snuff out. I don’t remember anyone checking her condition prior to arranging her move.”

Pat’s declining health and understanding of the agreement between the VA and NeuroRestorative made the family think she would not have to settle into a new home again.

On Feb. 6, 2022, a VA administrator sent a letter to NeuroRestorative explaining that they would enter into an agreement to pay for Pat’s care because the “veteran is at end-of-life care and moving [the] veteran would create undue circumstances.”

The VA administrator acknowledged that “a move to the facility at this time would add undue stress to the veteran and her family.”

Pat and her family wonder what could have possibly changed.

$28,000 a month for care

Pat’s main concern is spending time with her family. She’s an extrovert and loves to chat. Many of the nurses and caregivers at NeuroRestorative adore Pat, who is equal parts witty and kind.

“With our patients with ALS, quality of life is so important because they’ve lost their physical function,” Cassie Kuhn, a nurse practitioner at the University of Utah’s Multidisciplinary ALS Clinic said, “the other piece of their quality of life is that psychosocial component. And so with [Pat] she thrives off of her relationships with her family who are close by and she likes to see her kids and she has people that visit often.”

Kuhn said it was important for Pat to stay at NeuroRestorative in Riverton, mainly because of the proximity to her family.

“Existential stress for these patients is significant,” Kuhn said, “I fear what could happen if she does have to move or doesn’t have that family support ongoing.”

Stressful events can trigger the next progression of the disease Kuhn said. And for Pat, the next progression is losing her ability to speak.

A week after getting a phone call from a VA social worker informing her she’d have to move, Jason Funderburk, VA Salt Lake City chief of staff, sent Pat an official letter.

“Your medical records have been evaluated and it has been determined appropriate for your care to be transitioned from NeuroRestorative to Heritage Park Healthcare & Rehabilitation.”

Funderburk stated Heritage Park reviewed Pat’s records and accepted her as a patient. Two days later, on Jan. 19, she would be transferred, per the letter. If she declined the transfer, she would have to pay NeuroRestorative out of pocket starting on Jan. 20. The cost could be more than $28,000 a month, according to the billing documents the facility sent the VA each month.

The Delgados asked if the VA might pay for care at a long term community nursing home in the Salt Lake Valley, making it a little easier to continue visiting her each day.

There are no long term care facilities in Salt Lake County that are contracted with VA to provide care for a veteran with a tracheostomy tube. The only facility in the Wasatch Front that is contracted for such care is Heritage Park in Roy.

“They are not giving us options,” Mario said.

On Jan. 19, Pat, Mario and Sara waited all day. They assumed that the VA would arrange transportation to take Pat to Heritage Park in Roy. No one came. So Pat stayed.

As the family worked to keep Pat close, the VA asked to meet with them shortly after The Tribune had reached out requesting comment.

On Jan. 29 Funderburk and several other representatives met with Pat and nine other friends and family who came to voice support for keeping her at NeuroRestorative.

The VA representatives explained that Pat’s care at NeuroRestorative was paid through a Veteran Care Agreement — a temporary contract that isn’t supposed to last more than 100 days. The agreement and memorandum shared with The Tribune state that it is valid for three years and Pat had been there two.

“Because she was too fragile to move, we agreed with the facility that they would become contracted under a Community Care Network,” Kelsey Worner, community care services chief for the VA, said. NeuroRestorative never became a contracted facility and apparently failed to send in a monthly required form, triggering the VA’s letter stating it would no longer pay.

NeuroRestorative’s rating through the Centers for Medicare & Medicaid Services Five-Star Quality Rating System is a major sticking point, according to the VA.

The VA requires that a facility have at least a three-star ranking to qualify for a contract; Neurorestorative only has two.

“We have to rely on objective measures by law,” Funderburk told the family, “and one of those objective measures is the CMS star ratings.”

NeuroRestorative declined to comment further on their rating.

The VA Salt Lake City Health Care System said it would not discuss Pat’s case specifically but provided answers to more general questions.

The VA Salt Lake Health Services public affairs officer Jeremy Laird, wrote to The Tribune that while Medicaid’s Quality Star Ratings were used to identify “high-quality facilities,” “other factors like a family’s wishes are taken under consideration as part of the overall decision-making process, ensuring the individual Veteran receives the highest quality of care.”

Medicaid could potentially pay for Pat’s care at NeuroRestorative — but the state of Utah could recover the costs by taking her home and all other assets. Mario was Pat’s caregiver prior to the move to NeuroRestorative and lives in their family home.

If Medicaid is the only option left, “I’ll be straight up,” Mario said, “I’ll probably be homeless.”

A disease that came with service

Those who serve in the military have an increased likelihood of developing ALS, according to studies from Harvard researchers. In 2008, the VA started covering all veterans for ALS.

Pat deployed to Bagram, Afghanistan, from 2007 to March 2008. (Mario deployed shortly after). She also served in the Utah Army National Guard. “I was always committed,” Pat said. Altogether, she deployed twice and served for 32 years.

Not all ALS patients choose to get a tracheostomy. But, for Pat, relying on a ventilator has meant more time to watch her grandkids grow, to reminisce about her childhood with her sisters and to be with her kids, who already lost their father to cancer.

“Many people living with ALS face a challenging decision when it comes to invasive ventilation,” Leslie Ryan, with the ALS Association, wrote in an email, “not only because of the medical implications, but also because of the extreme financial burden and lack of support and resources.”

Fighting back

In a folder titled “Moms fight” Mario, Greg and Sara have assembled dozens of documents. They’ve spent hours soliciting more than 30 letters supporting Pat’s continued care in the Salt Lake Valley.

Pat’s sister Yvonne Hincks wrote “[Pat] hasn’t stopped crying since she got that call, we are all trying to stop this move. She will surely die and she knows this, she does not want to give up.”

Mario and Greg spent weeks pouring through VA documents, trying to understand the labyrinthine process and policies that would determine whether or not their mother would have to leave her home.

They reached out to Senators Mitt Romney and Mike Lee for help and Rep. Burgess Owens.

Despite the outreach, on March 1, Mario received a letter from the VA Salt Lake Health Care System denying their appeal.

“We appreciate and respect the numerous heartfelt letters with an outpouring of support from many family and community members,” the letter stated. “Family requests are always considered in the decision process as we attempt to fulfill Veterans desires.” It was signed by Funderburk and medical center director Angela Williams. “Safety and quality standards prohibit me from supporting your request.”

The next step is filing an additional appeal to the regional Rocky Mountain VA office. Mario filed that appeal on April 4.

In the meantime, Pat is remaining at NeuroRestorative. The family is unsure if they will be hit with a bill for tens of thousands of dollars. They say they were initially told that they would not be charged but never got a statement in writing.

The tight-knit family is determined to fight. They’re private people. But the move has spurred them to speak out.

Despite developing ALS, Pat doesn’t regret her service. She’s proud of serving her country and state. But she hopes that other veterans won’t have to face the same hurdles she has. She’s still fighting — not just for herself but for other soldiers who may find themselves in the same place.

“If there are other soldiers,” Pat said, “I want them to know they are not alone.”