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“To say ‘well, you’re only qualifying for this much hours’ puts the rest of that care, the need for care, squarely on the shoulders of the parents,” said a parent.
ENGLEWOOD, Colo. — A family in Englewood hopes Colorado’s Joint Budget Committee considers their testimony for a big decision this month.
The parents, Rod Schiller and Amy Wiedeman, want to see more money for private duty nurses, to care for kids like their son, Luke, with cerebral palsy.
The Joint Budget Committee is considering the request for $15 million in state money that the federal government would match. That $30 million combined would boost the Medicaid reimbursement rate, so providers can hire more nurses for families. The Joint Budget Committee will consider the motion March 13, then introduce their budget bill to the state House of Representatives at the end of the month.
“This is Lukey right here, coolest kid ever,” Wiedeman said. “He was born with a brain malformation, so that is what has caused a lot of his spastic cerebral palsy type stuff.”
Luke’s brain and body don’t communicate, and he needs the same care as a newborn, his parents said. He needs “eyes on” 24 hours a day, seven days a week.
“There is no room for error,” Schiller said.
These parents, both with full time jobs in an office, don’t have help on Fridays.
“When Luke was younger, he qualified for 24/7 nursing based on his medical complexity and condition that has been slowly cut,” Wiedeman said.
Now Medicaid pays for a nurse to come to their house four days and four nights per week, but they say that’s getting cut down.
“To say ‘well you’re only qualifying for this much hours’ puts the rest of that care, the need for care, squarely on the shoulders of the parents,” Wiedeman said.
They filed an appeal and testified to Colorado’s Joint Budget Committee to boost pay for private duty nursing, to attract more nurses.
“We would like our legislature understand you have a decision to make,” Wiedeman said.
A good nurse can help keep Luke out of the hospital, they said. After dozens of hospital visits already, these parents want to keep that beaming smile on their son’s face.
“He’s beautiful. He’s a wonderful kid, we are very lucky,” Wiedeman said.
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