Mom says Venango County removed her son's full-time nurses
A mom says she's now forced to take on the role of caregiver for her 23-year-old son after Venango County decided to remove the full-time nurses keeping a watchful eye on his epilepsy.
Cheryl Bowan has letters from leading neurologists at both UPMC and Allegheny Health Network. They say her son needs a high level of care, calling it a life-or-death situation.
Bowan doesn't think she's the only one dealing with this. She believes it's a fight that many parents now need to take on when it comes to getting the in-home care needed for their medically compromised or disabled adult children.
She says it seems like a switch flips when a child reaches 18. And despite a mountain of paperwork, she says she's stuck in a scary place.
Bowan is a mom turned full-time caregiver out of necessity.
"I get so frustrated. The mental and emotional exhaustion is beyond words," Bowan said.
Her 23-year-old son Josh is autistic and loves video games and Scooby Doo, but he fights daily against life-threatening epilepsy diagnosis.
Letters written by the leading neurologists at both UPMC and Allegheny Health Network say Josh needs to keep his state-funded nurses "for intractable medication-resistant mixed epilepsy."
Boway says the letter reads, "Continuous nursing staffing is strongly recommended to prevent injuries and risk of death."
Despite that, Venango County Human Services and the office of developmental programs sent her a letter, saying Josh's previous nurses would disappear after March 23.
"So what do they want to see happen then?" KDKA-TV's Meghan Schiller asked.
"They want what they call DCSs or direct care staff," Bowan explained.
But Bowan argues not all direct care staff in Pennsylvania are legally permitted to administer what her son desperately needs during a seizure, which is schedule 4 narcotics.
Bowan wonders if a workforce shortage could be playing a role.
According to the Pennsylvania Homecare Association, more than 400,000 seniors and medically fragile people rely on in-home care in the state. More than 112,500 home care shifts go unfilled every month, mostly due to staffing issues. And data shows it would cost 127% more to care for an adult like Josh in a Pennsylvania nursing home versus at home.
Bowan now plans to appeal and fight this decision in the courts.
"'Why don't you just put him in an institution and be done with it?' In all honesty, my child would be dead within three months," Bowan said.
KDKA-TV asked the Pennsylvania Department of Human Services, which oversees the various county offices, to explain the process, asking how nursing staff could suddenly change if the medical condition does not.
DHS would not comment on any specific cases but said the program is state supervised but county administered. They said if a parent or caregiver disagrees with a reevaluation, they can appeal, which is exactly what Bowan is doing.
KDKA-TV also reached out to leaders in Venago County. They say they are unable to comment on specific individuals or families, but sent a statement, saying:
"Venango County Human Services is dedicated to ensuring that individuals and families have access to essential services and supports they need to lead fulfilling and independent lives.
"We encourage individuals and families to seek support whenever needed, ensuring they have the resources to thrive in their daily lives."
