EFFECT
Uncertainty through the changes
At 29, Annah Mobus lives with Spinal Muscular Atrophy. She is bound to a wheelchair and depends on others to care for her through Medicaid. However, recent changes challenge her mobility.
By Lindsey McIntosh and Hallie Stafford
Every part of Annah Mobus’s day begins with help. Before she gets out of bed, one of her nurses lifts her into a sitting position, helps her dress, prepares her feeding tube, and sets up the medications she’ll need.
Annah has Spinal Muscular Atrophy (SMA), a genetic condition that makes her unable to move most of her body except her head and part of her right arm. She depends on Medicaid-funded caregivers to live safely at home, raise her son, and maintain her independence.
Annah has Spinal Muscular Atrophy (SMA), a genetic condition that makes her unable to move most of her body except her head and part of her right arm. She depends on Medicaid-funded caregivers to live safely at home, raise her son, and maintain her independence.
Her wheelchair costs between $40,000 and $50,000. Mobus attached switches that turns it on and off, she has a power box in the back that holds her ventilator, and she has a robotic arm. All of that combined costs $180,000. The ventilator she uses every night costs $50,000 and is rented for $10,000 a month.
“Total, for me to survive without Medicaid, it would be like $300,000 a year, plus millions if I have to go to the hospital,” she said.
“Total, for me to survive without Medicaid, it would be like $300,000 a year, plus millions if I have to go to the hospital,” she said.
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I'm not a person that likes to need help, but obviously I need to get help.
Her husband, David Carroll, is a nurse trained specifically to care for her. She also employs Personal Care Assistants who clean, prepare food, manage laundry, help her dress, and maintain the feeding tube and medical equipment she relies on.
“They do everything from putting dishes away to making my coffee,” Annah said.
“They do everything from putting dishes away to making my coffee,” Annah said.
Source: curesma.org
Victoria, a nurse for Annah Mobus, cleans Mobus’s hair in the morning at Mobus’s home.
The One Big Beautiful Bill introduces Medicaid cuts set to begin in December 2026. According to the Kaiser Family Foundation, proposed federal reductions of $2.3 trillion over 10 years could “fundamentally change how Medicaid financing works,” severely impacting access to home care services.
More than half of Medicaid spending supports elderly and disabled individuals, the people most likely to use home care. In Kentucky alone, the cuts could eliminate $1.9 billion in federal Medicaid funding each year.
Mobus missed reflexes and was not making physical milestones after she was born in 1996. Her mother, Jenifer Hill, took her to Vanderbilt at six months old when Mobus got diagnosed with SMA type 1.
The doctors told Hill SMA type 1 is one of the most severe diagnoses where the child would die before their second birthday. They kept predicting a short life span until Hill insisted on using non-invasive ventilation from research she did.
More than half of Medicaid spending supports elderly and disabled individuals, the people most likely to use home care. In Kentucky alone, the cuts could eliminate $1.9 billion in federal Medicaid funding each year.
Mobus missed reflexes and was not making physical milestones after she was born in 1996. Her mother, Jenifer Hill, took her to Vanderbilt at six months old when Mobus got diagnosed with SMA type 1.
The doctors told Hill SMA type 1 is one of the most severe diagnoses where the child would die before their second birthday. They kept predicting a short life span until Hill insisted on using non-invasive ventilation from research she did.
Source: smafoundation.org
Mobus went through school through all the hospital visits. She started college at 15 and earned three degrees from Western Kentucky University. She met Carroll through a dating app and they had a son together, Charlie Carroll.
Mobus had her son through C-section and he has similar breathing problems like Mobus. Her caretakers and Carroll are a large part of caring for Charlie.
Mobus had her son through C-section and he has similar breathing problems like Mobus. Her caretakers and Carroll are a large part of caring for Charlie.
Annah's 5 year old son Charlie sits on her lap as he gets his pulse taken from an oximeter after feeling sick. Charlie's oxygen read 93% and his rate rate at 155 beats per minute.
Mobus will have to rely solely on her family if Medicaid no longer pays her caretakers. Carroll would have to return to work as a nurse at a hospital. Mobus’s mother, sister, and Carroll would have to rotate days to care for her. Mobus’s mother’s home does not have the amenities like a roll-in shower.
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If they come to my door and say, ‘You didn’t pay for it! I need your breathing machine!’ I’m locking the door. That puts me in the position that I just stole a $50,000 machine. I don’t want to be that person, but it’s either that or you die.
Annah helps her Personal Care Assistant Hailey go through her stockpile of diapers to give away at a baby shower. In her garage she keeps all of her medical supplies and equipment.
Mobus would have to be admitted to Vanderbilt if her breathing machine were taken away from her. Mobus would be without family, bound to a bed, and have nothing to do.
“Imagine being stuck to a bed, your limbs are very heavy, you can’t move, you wait for people to come in and check on you. But you are not in your space,” Annah said. “It feels very debilitating.”
“I never want to live in that world. It is a little bit like a jail,” she said. “You are just stuck.”
“Imagine being stuck to a bed, your limbs are very heavy, you can’t move, you wait for people to come in and check on you. But you are not in your space,” Annah said. “It feels very debilitating.”
“I never want to live in that world. It is a little bit like a jail,” she said. “You are just stuck.”
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