SERGEANT BLUFF, Iowa (KCAU) — A Sergeant Bluff family is in panic, as they will soon lose their in-home nurse for their disabled son due to Iowa Medicaid reducing how much money they receive.

Anthony Lukken, 41, or Tony as he prefers to be called, has Duchenne’s Muscular Dystrophy (DMD), a disorder that causes a person’s muscles to become weaker over time.

Tony was diagnosed with DMD at the age of 5 years old, and since then has been immobile.

“It is scary to have DMD (Duchennes Muscular Dystrophy), because you rely on other people for everything,” said Anthony.

Tony lives with his mom and dad, who help him live his day-to-day life.

“Well, I’m his main caregiver, but he has a nurse that comes Monday through Friday for eight hours, and she helps throughout the day. He needs a lot of suctioning and medications, and treatments. So it’s a pretty busy day,” said Lori Lukken, Anthony’s mother.

To pay for the nurse, the family uses an Iowa Medicaid program, which normally wouldn’t apply to Tony. 

However, a couple of weeks ago, the Lukkens were informed they would no longer allow him to use that program.

“Iowa Medicaid Health and Disability Waiver Program has denied my exemption to policy and said I need to comply with each HD waiver guidelines and I can not appeal,” said Anthony.

“Which is like $3,000 a month, which isn’t enough to have nursing come in,” said Lori.

While the family could still have a nurse, it would only be for a couple of hours a day.

“We’re going to probably lose our nursing agency because they have a hard time staffing anyway. And it’s going to be hard to staff a nurse two hours a day in a home,” said Lori.

“My home health agency is the only agency in town that will take my type of funding. The waiver case manager just notified me that we cannot ask for an extension while we try to figure things out,” said Anthony.

Democratic Iowa House Representative J.D. Scholten says this is a common occurrence for Iowa families.

“What we’ve seen coming out of the state government is that it’s limiting, then they limit more and more of who can be on Medicaid and who cannot be. It is very frustrating to see just regular Iowans not getting the care they need, and this is unnecessary. We should be able to cover everybody,” said J. D. Scholten, the Democrat Iowa House of Representatives for District 1.

If the Lukkens don’t have a nurse, Lori says it’ll be stressful being the only one with extensive training to help Tony.

“Without a nurse for a week, my mother would be my only caregiver 24 hours seven days a week,” said Anthony.

“Well, when the nurse comes, I am able to sleep, go to doctor appointments, just get everyday things done. It would be very difficult and very unfair to Tony to have such a stressed, tired caregiver,” said Lori.

While the Lukkens are continuing to figure out what to do, Iowa Democrats are continuing to fight for the expansion of Medicaid.

“The problem is right now, the Republicans with the trifecta at the state level are not interested in doing that. If anything, they want to narrow it more. And the bill that we passed this year potentially will take 183,000 Iowans off health care from Medicaid if it’s fully implemented,” said Scholten.

Lori said that, due to Tony’s need for constant attention, putting him in a care facility is out of the picture and would cost more than having a nurse.