Sylvia Colt-Lacayo is largely on her own to figure out how to pay for the care she needs to live on campus with a degenerative neuromuscular disability.
Sylvia Colt-Lacayo is 18, fresh-faced and hopeful as she beams confidence from her power wheelchair. Her long, dark hair is soft and carefully tended, and her wide brown eyes are bright. A degenerative neuromuscular disease, similar to muscular dystrophy, has left her with weak, underdeveloped muscles throughout her body, and her legs are unable to support any weight.
“On paper, I did everything right,” Colt-Lacayo said. “You get into this school, they give you a full ride, but you still can’t go, even though you’ve worked so hard, because you can’t get out of bed in the morning. It’s mind-boggling.”Federal and state insurance will pay for them to live in a nursing home, but if they want to live in the community, home-based care is often underfunded.
Amy Colt helps her daughter Sylvia Colt-Lacayo out of bed. Colt-Lacayo has a neuromuscular disease similar to muscular dystrophy, leaving her muscles underdeveloped and her legs unable to support any weight.Colt-Lacayo’s mom, Amy Colt, has been her daughter’s caregiver from the time she was born, alongside her full-time job as a teacher. It’s a strenuous job, requiring both brawn and delicacy.
In the bathroom, Colt lifts her daughter to the toilet, then the shower. To help her dress, Colt moves her back onto the bed and rolls her side to side, shimmying her pant legs on a bit at a time.It’s a grueling process, and one that needs to be repeated every time Colt-Lacayo uses the bathroom. That plays into something she calls her “pee math.” She avoids drinking water between 9 a.m. and 3 p.m. so she does not have to use the restroom at school.
With the 5.4 hours Medi-Cal was willing to cover, she estimated she would need about $2,000 a week during the school year, or $60,000 annually “You have to fend for yourself to find this information,” she said. “So many people don’t end up achieving their goals because they don’t know how to get the care they need.”
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