ALBUQUERQUE, N.M. (KRQE) – “I’ll pick her up, and she’ll pat my shoulder. Everything’s okay, Dad,” Ben Cortez said of his 10-year-old. “Everything’s okay, Dad. That is the message,” his wife, Alicia, agreed.

The Cortez Family needs that reassurance from their daughter, Amariz. She slowly lost her independence over the last few years because Rett Syndrome is impacting her brain development and causing a loss of muscle tone. She is also living with multiple sclerosis and epilepsy. 

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“And our norm is commonly that she’ll have 30-minute clusters of seizures, once, twice, or three times a day, every one to three days,” Alicia explained. 

There’s no warning. Meaning, Amariz needs eyes on her 24/7. So her Mom said she had to quit her job to provide for that. Alicia even has to sleep next to her daughter every night. 

“I either have a hand on her, or she has her head resting on my chest or on my belly. And that’s how I know she’s breathing. That’s how I know she’s not having a seizure,” she shared. 

Alicia is not medically trained. She’s learned as much as she can to keep her daughter safe, but the Cortezes said Alicia is supposed to have professional help. 

Amariz is one of about 250 children considered medically fragile. She was approved for the State’s Medicaid waiver program, which should be providing an in-home nurse. “However, the idea of having a nurse come into our home — to help with —  to meet Amariz’s needs has always been a distant wish,” Alicia said. 

At most, Amariz’s family said she received 20 hours for about a month or two in 2020. She requires 40 hours, according to an assessment conducted through the University of New Mexico’s Center for Development and Disability. So, the Cortezes submitted written requests. The response? Alicia said she was told to go through the appeals process. She questioned, “Why should me and my daughter, or anybody on the medically fragile waiver program or any state aid program like this, have to jump through fiery hoops to be able to get the most basic of services that this waiver provides?” 

Tired of asking, the Cortez Family sued. And they are not the only ones. 

In the federal lawsuit, they and three other New Mexican families call out the Department of Human Services. The state agency gives Medicaid dollars to three insurance companies – Blue Cross and Blue Shield of New Mexico, Western Sky Community Care, Inc., and Presbyterian Health Plan, Inc. – to pay for nursing services. The families claim those three are pocketing the taxpayer money rather than providing nurses. 

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“These insurance companies have breached their contract. They’re not providing the care that they’re supposed to,” Attorney Holly Mell explained. “And then, HSD is supposed to make sure that the care is being provided. So they should enforce the contract.”

Mell, with Disability Rights New Mexico, filed the lawsuit earlier this year. Partnering with the New Mexico Center on Law and Poverty, the group of attorneys is alleging violations of the Americans with Disabilities Act and the Patient Protection Act. 

“For most of these kids, the risk is if they don’t have that care in the home, they would have to be living in a hospital setting or in an institution because their needs are so severe,” Attorney Mell said. 

The State will not comment on the allegations in the lawsuit, so KRQE spoke with the Medicaid Director about HSD’s relationship with the three insurance companies. Director Nicole Comeaux said the State closely monitors how they spend the Medicaid dollars and doesn’t allow more than a 3-percent profit.

“Just trying to ensure that the dollars being passed to them are really being spent on our members, not being spent on, for example, salaries,” Comeaux explained. 

Beyond the dollars, Amariz’s family has been told no nurses are available. Comeaux pointed out that finding nurses is the job of the insurance companies. And, she said, that has been a challenge because the COVID-19 pandemic led to burnout, the national nursing shortage, higher salaries for traveling nurses, and nurses preferring to work in hospitals over homes.   

“They want to do what they do and just take care of all of us where they see the greatest need; and so, I think there was kind of a large shift,” Comeaux added. 

The Cortez Family said it is going to take a policy shift to properly care for the state’s most vulnerable. 

“You agreed to do something. Follow through,” Amariz’s Dad said. “Pretty simple.” Through tears, her Mom added, “I will do everything in my power to make sure that she gets the care that she needs and deserves. That really is the bottom line. But why do we have to wait?”

KRQE reached out to the three insurance companies and did not hear back from Western Sky Community Care, Inc. Blue Cross Blue Shield of New Mexico told KRQE the company cannot comment on pending litigation. Presbyterian Health Plan, Inc. provided the following statement:  

At Presbyterian Health Plan, our purpose is to improve the health of the members we serve. We work closely with the state to fulfill this purpose for our Medicaid members and believe that the facts of this case will reflect our ongoing commitment to those we serve.

HSD is hopeful a federally funded 15% pay hike will attract more nurses to the program. The state agency said it is also working with UNM to create a pediatric simulation lab to train nurses, specifically for the in-home setting.

Disability Rights New Mexico is asking for class certification in the lawsuit. So Attorney Mell is encouraging any family with a medically fragile child who qualifies for an in-home nurse and is not receiving the service to connect with the organization to join the suit.