Omaha family shares fight to get a medical robotic arm for teenage daughter

By Maddie Augustine

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    OMAHA, Nebraska (KETV) — At just one year old, Ella Peters was diagnosed with spinal muscular atrophy, or SMA.

“It’s a rare neuromuscular disease that causes muscle weakness in kids,” Jennifer Peters, Ella’s mother, said. “It’s kind of like an ALS in adults.”

Ella, now a teenager, has little to no movement in her arms and hands. She relies heavily on caregivers like her mom, Jennifer.

“It [SMA] makes everything more difficult,” Jennifer said. “She is a very independent, sassy teenager. She does have to rely on people to help her get set up with things, to hand her things. She can’t do her own hair or scratch an itch on her nose, those kind of things.”

In an effort to improve Ella’s quality of life and give her some independence, the Peters family learned about the Jaco robotic arm. Jennifer said a family friend’s daughter in Texas already uses the arm.

“When we were looking at this robotic arm for her, that was something that would give her a different sense of independence, where she could do these things for herself and not have to constantly ask people,” Jennifer said.

The Peters signed Ella up for a trial in Dec. 2023.

“Maybe 30-minute demonstration, and in that time, she was able to get her, like water bottle and take a drink herself,” Jennifer said. “She was able to go to a cabinet, open the cabinet on her own.”

Throughout the trial, Ella’s physical therapist tracked how it affected her ability in activities of daily living, or ADLs.

“On every area that was assessed, she had an improvement with the arm,” Jennifer said.

In early 2024, Jennifer said they applied for the arm through their insurance coverage. Ella’s therapist submitted a letter of medical necessity, which concluded the Jaco robotic arm would allow Ella to perform medically necessary activities or daily living. The letter also included a video link showing Ella using the arm during the trial for further proof.

However, in Feb. 2024, their insurance provider, Molina Healthcare, denied coverage. The denial stated the arm was not covered because it is a convenience item.

“Why is this being looked at as a convenience item or as experimental and investigational when it’s a piece that’s been around for 15 years and has hundreds of users all over?” Jennifer questioned.

The Peters appealed and received a second denial in May 2024. That denial again stated the arm is a convenience item and not medically necessary nor covered under Molina Healthcare of Nebraska’s Medicaid plan.

“Having to spend extra time to fight for something that shouldn’t be a fight is really frustrating,” Jennifer said.

The Peters appealed again and requested a State Fair Hearing.

KETV Investigates looked and read through the evidence submitted for that hearing and found Molina had an external review of the case and the robotic arm.

That expert first weighed in on May 8, finding the device to be medically necessary, but after an exchange between Molina and the external reviewer, they changed their determination. Now, saying the arm was not medically necessary.

“They asked basically just is there any new clinical trials in the last six months? That was the only additional question there was. And they said no. And then they change the the, outcome of the review and said it was no longer medically necessary,” Jennifer said.

During the hearing in October, Jennifer said the insurance company changed their reasoning for denying the arm yet again.

“During that, state fair hearing was when Doctor Esser also said, well, this item doesn’t eliminate the need for a caregiver. And I said, well, that’s not the threshold, is it? And she said, well, no,” Jennifer said.

According to federal Medicaid law under the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit, medical equipment does not need to cure a condition to be covered.

Jennifer believes the FDA-approved Jaco Robotic Arm fit that bill.

“Her doctor wrote an order for it,” Jennifer said. “Her physical therapist assessed her and deemed that this would help her.”

DHHS did not reverse the denial in the Oct. hearing, leaving the Peters frustrated because they said they could see how beneficial the arm would be for Ella during the trial.

“She figured out on her joystick how to do it and was instantly putting it into practice,” Jennifer said.

The Peters were not able to secure a district court hearing to appeal for a final time, so the family is now looking ahead to 2025.

“We have to try to see if, in the new year, we can start the process over with another insurance company,” Jennifer said.

KETV Investigates, spoke with the Peters family again on Dec. 19, they said they have made the decision to change insurance companies starting in January.

During KETV’s investigation, we did reach out to Molina with questions and a request for an interview, a spokesperson provided a statement.

“Molina follows well-established clinical policies in accordance with state guidelines and medical evidence. As a matter of policy, Molina does not comment on any individual member’s care or care plan.”

We also asked DHHS how the fair hearing process works, DHHS said they follow Nebraska Title 53 in every instance.

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