The Des Moines area no longer has a place for Ana De La Cruz.

The 41-year-old Norwalk woman, who is paralyzed from the neck down, can’t breathe without a ventilator machine’s assistance. Caring for her is a complicated and expensive service, which is fraught with infection risks.

For the past two years, she lived at Fleur Heights Care Center, the last central Iowa nursing home that took patients on ventilators. But Fleur Heights decided recently to phase out the service. And after De La Cruz was hospitalized last month, the nursing said she could not return there.

Her husband, Rick De La Cruz, doesn’t want to see his wife move to another nursing home halfway across the state. “She’s everything to me. She’s the joy of my life,” he said. He would face the choice of quitting his truck-driving job in Des Moines and moving — or of keeping his job but being able to visit her only one or two days a week instead of every day.

The Fleur Heights nursing home blames insufficient and untimely payments from Iowa’s Medicaid program, which covers most disabled Iowans who use long-term ventilators. Just six of Iowa’s 417 nursing homes remain listed as places that accept such patients. All of those facilities are at least an hour-and-a-half drive away from Des Moines.

Rick De La Cruz said Medicaid managers said it would be too expensive to provide around-the-clock nursing care for Ana at his apartment. She’s currently staying at a specialized unit that a national company runs at Des Moines’ Mercy Medical Center. But the hospital program generally doesn’t keep patients longer than 25 days.

The De La Cruzes’ most likely nursing-home options are in Lenox, 90 miles to the southwest, and Waterloo, 130 miles to the northeast.

Ana De La Cruz has told her husband she's unsure if it's worth transferring to a nursing home so far away from him and the rest of her family. Her decision may come down to “if she wants to continue going forward, or if she’s just ready to go home to the Lord,” he said.

Although death would be a last resort, the born-again Christian couple said the prospect doesn't frighten them.

Adult patients who are conscious and of sound mind can generally instruct medical providers to turn off life-sustaining machines, such as ventilators. "If she can clearly express that, and if that is her wish, then that is her choice to make," said Dr. Bret Ripley, interim medical dean at Des Moines University. Ripley, who is not involved in De La Cruz's case, added it was "heart-breaking" to hear that a Des Moines patient would consider such a move because of a lack of local services.

The De La Cruzes' predicament comes amid a wave of complaints about a lack of services for Iowans with severe disabilities. The criticisms have drawn increased attention since last year, when Iowa hired three private companies to run its Medicaid program.

Rick De La Cruz sat by his wife's side in the hospital last week, holding her hand as he recounted their plight. Ana De La Cruz listened intently and nodded. She occasionally chipped in a few words in a barely audible whisper. “That’s right, that’s right,” she said at one point, as he described their loving, 22-year marriage, and their deep Baptist faith.

Ana De La Cruz is a former business analyst for a West Des Moines company. She has been paralyzed since 2014, when doctors at the Mayo Clinic removed a non-cancerous, brain-stem tumor that had hampered her life for years. The surgeons had warned that paralysis was a possible danger of the operation.

Like many patients with such serious long-term health issues, De La Cruz has Medicaid insurance coverage.

Nursing-home industry leaders say Medicaid payment rates often fail to cover their costs for patients who need ventilators. The costs typically include hiring respiratory therapists, who specialize in such care.

Three national management firms took over administration of Iowa’s Medicaid program in 2016. Under the controversial shift, the state and federal governments pay the companies a set amount per member, and the companies are supposed to make sure those members receive the care they need.

Jennifer Conner, chief operating officer of Fleur Heights Care Center, said her company made “the very difficult choice” of dropping ventilator-care service on Sept. 1. She said the new managed-care companies have been slow to pay bills, compounding the problem of insufficient Medicaid payment rates.

“We cannot continue to shoulder the increasing costs for this advanced level of care when reimbursements remain stagnant and are frequently delayed. We care for some of the most vulnerable members of our community, and it’s our responsibility to do what’s in the best interest of all of our current residents as we continue to provide them with the highest quality of care,” Conner wrote in an email to the Register.

Cyndy Miller, a lawyer for the advocacy group Disablity Rights Iowa, said state administrators are responsible for enforcing the Medicaid management companies’ contracts. The lack of any Des Moines-area nursing homes offering ventilator care suggests the companies aren’t fulfilling their responsibility to ensure an adequate network of care providers, she said.

“If you have to move somewhere else to get service, that’s a disservice to the individuals,” Miller said. Although it can be challenging to ensure such services are available, she said, “there’s got to be some kind of middle ground.”

Amerigroup, the company overseeing De La Cruz's benefits, said it couldn't comment on a specific case, but that it is committed to ensuring an adequate network of care providers. "Amerigroup works every day to ensure that our members get the medical care they need. That’s why it’s disappointing whenever a medical facility makes a decision to stop offering services to serve the needs of individuals facing serious health issues," spokesman Tony Felts wrote in an email to the Register.

Matt Highland, a spokesman for the Iowa Department of Human Services, said the state's Medicaid program pays nursing homes an average of $601 per day for residents on ventilators, compared to $172 per day for other residents.

"The department’s goal is to serve people in the most appropriate setting," Highland wrote in an email to the Register. "However, we are unable to control the specific services a facility will provide. Each facility must weigh costs and risks associated with any service." He added that access to ventilator care had been a concern before the managed-care companies took over Iowa's Medicaid program, and that shortages of health-care specialists play a part in such issues.

The Human Services Department said it received nursing-home bills for just 55 Iowa Medicaid members on ventilators in 2015, the latest year for which statistics were available.

Many other people who use ventilators are able to stay in their own homes, with assistance from visiting nurses, aides and therapists. But advocates say those patients want to know that a local nursing home could care for them if their health deteriorates or if their families need a break.

Doug Jacobson of West Des Moines is one such patient. Jacobson, 62, has lived 27 years with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. He uses a motorized wheelchair and breathes with a portable ventilator.

Jacobson has been in a nursing home in the past and hopes not to return. He expressed his feelings a few words at a time, in between breaths that the machine pushed into his lungs via a tube inserted into his throat. “I’m going to … live in my house … until I die,” he said.

But he knows there might come a time when he or others in his situation need to go to a nursing home, at least temporarily. “There shouldn’t be … an area uncovered,” he said. “It’s a … necessity.”

Jacobson’s wife, Gail, cares for him with help from a family friend and visiting nurses and therapists. She’s confident they can keep him safe at home — but she worries about what would happen if they needed temporary placement for him. For example, she said, what would they do if she had a health crisis and needed hospitalization? “Now there isn’t a backup in this town,” she said. “That’s crazy for a town of this size. It’s scary.”

Ana De La Cruz may soon transfer to Harmony House Health Care Center in Waterloo, one of the six nursing-home options around the state. The others are in Fort Madison, Keokuk, Lenox, Oakland and Oelwein.

Harmony House administrator Barbara Murphy said the Waterloo facility serves relatively young patients with disabling conditions. Harmony House, which has a total of 122 beds, can handle up to 15 people on ventilators.

Murphy said it's tough for nursing homes to break even financially on ventilator patients, even though Medicaid pays roughly triple its standard daily rate for them. “They require a great deal more care than a typical nursing home resident,” she said.

Among other things, patients on ventilators are more susceptible to infections, including germs that cause pneumonia, Murphy said. They need constant monitoring by nurses and regular visits with respiratory therapists.

She said De La Cruz would not be the first ventilator patient to come to the Waterloo facility from far away. "We have a number of people who go without visitors because their families can't get over here on a regular basis," she said. "So they're here by themselves most of the time. It's so sad."

There never have been many Iowa nursing homes offering the service, but local experts said they couldn't remember a previous time when the Des Moines area lacked any.

Linda Newswander, a respiratory therapist who cared for Ana De La Cruz at the Fleur Heights Care Center, said advancing technology has made it easier for many patients to live at home with portable ventilators. But it hasn’t erased the need for some patients to live in nursing homes.

Newswander has been a respiratory therapist for 42 years, and she has seen how improvements in care have increased the number of people living for years with conditions such as paralysis, muscular dystrophy, chronic obstructive pulmonary disease and amyotrophic lateral sclerosis. Those patients deserve the reassurance that a nursing home would be available if they need one, at least temporarily, she said.

“There’s still going to be a need. There are going to be more Anas,” she said. “It breaks my heart that there are no more places for them in Des Moines.”