Anthony Lukken, 41, or Tony as he prefers to be known, has Duchenne Muscular Dystrophy. Duchenne Muscular Dystrophy is a severe, progressive muscle-wasting disease caused by abnormalities in the dystrophin gene. This genetic abnormality causes a lack or deficiency of the dystrophin protein, essential for muscle cell structure and function. As a result, muscle cells become more susceptible to damage, leading to progressive muscular weakness, muscle tissue loss, and, ultimately, heart and respiratory difficulties.
Tony lives with his mother and father, who assist him with everyday tasks. “Well, I’m his main caregiver, but he has a nurse who comes Monday through Friday for eight hours, and she helps throughout the day. He needs a lot of suctioning, medications, and treatments. So it’s a pretty busy day,” said Lori Lukken, Anthony’s mother.
The family pays for in-home nursing care through an Iowa Medicaid program that Tony would not typically be eligible for. However, a few weeks ago, the Lukkens were informed that they would no longer be able 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. The costs would amount to around $3,000 a month according to Lori.
Under the new policy, Tony would only receive nursing care for a couple of hours every 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.
If the Lukkens are left without a nurse, Lori says the responsibility of caring for Tony would fall solely on her, making it a highly stressful situation. “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.
Families nationwide are struggling with the same problem. Sarah Weston, an 8-year‑old from Illinois depends on a ventilator to breathe and a feeding tube for nutrition. She was approved for 112 hours of nursing care per week. However, as of last February, she was only receiving 44 hours.
Low pay is one reason for the in-home nursing shortage. Most in-home nursing care is funded through Medicaid, which reimburses agencies at low, fixed rates. These rates often don’t keep pace with inflation or wage growth, limiting what agencies can pay nurses.
These stories are a stark reminder of the real-life impact the nationwide nursing shortage is having on families. Without reliable in-home nursing, loved ones are left overwhelmed and vulnerable. Urgent action is needed to ensure quality care and protect the wellbeing of those who depend on it most.
Sources:
Arola, Brian. “Iowa Family in Panic, Wondering Whether They’ll Have an In-Home Nurse.” SiouxlandProud, Sinclair Broadcast Group, 19 June 2025, https://www.siouxlandproud.com/news/local-news/iowa-family-in-panic-wondering-whether-theyll-have-an-in-home-nurse/.
Burns, Alice, et al. “Payment Rates for Medicaid Home- and Community-Based Services: States’ Responses to Workforce Challenges.” KFF, KFF, 24 Oct. 2023, https://www.kff.org/medicaid/issue-brief/payment-rates-for-medicaid-home-and-community-based-services-states-responses-to-workforce-challenges/.
Duan, Dongsheng, et al. ‘Duchenne Muscular Dystrophy’. Nature Reviews Disease Primers, vol. 7, no. 1, Feb. 2021, p. 13, https://doi.org/10.1038/s41572-021-00248-3.
Victory, Lauren. “Illinois Children with Complex Medical Needs Receive Fraction of Care They Qualify For, Records Show.” CBS Chicago, CBS Interactive Inc., 1 Feb. 2024, https://www.cbsnews.com/chicago/news/in-home-nursing-shortage-1/?