Article Summary –
Cole Schiano, a 10-year-old with mitochondrial disease, relies on Medicaid for essential medical and occupational support, which includes skilled nursing and various medical supplies that enable him to live at home and attend school. The “One Big Beautiful Bill Act” signed by President Trump includes significant cuts to Medicaid, affecting services for children with disabilities like Cole, as his mother Victoria Schiano observes health care systems and schools adjusting budgets and reducing services. Victoria counters the narrative of Medicaid abuse, emphasizing the stringent verification processes families undergo to access necessary services, arguing that these services are crucial for Cole’s quality of life and community participation.
This June, Cole Schiano turns 10, celebrating a decade of life thanks to Medicaid, which has provided essential medical and occupational support.
“He’s a joy, loves school, friends, video games, ‘Star Wars,’ and knows all about Pokémon,” said Cole’s mother, Victoria Schiano, to the Pennsylvania Independent.
Cole has mitochondrial disease, which affects energy production in the body. “He has an IV for nutrients, feeding tubes for medicine, and blood sugar monitors,” Schiano explained.
The Cleveland Clinic describes mitochondrial disease as affecting cellular energy conversion, causing varied symptoms across patients.
Cole’s condition requires 20 hours of skilled nursing daily for school and community participation. At 4 months old, a social worker informed Schiano that Cole qualified for Pennsylvania’s Medicaid for Children with Special Needs (PH-95) program.
Now, Cole visits 36 doctors across two Philadelphia children’s hospitals.
In July, President Trump signed the One Big Beautiful Bill Act, introducing Medicaid cuts of $1 trillion from 2025-2034. Currently, Medicaid supports healthcare for one in five Americans.
Schiano, a national community engagement aid for Little Lobbyists, notes the impact of Medicaid cuts, like healthcare systems closing and schools reassessing budgets, affecting Cole’s services.
She criticizes the administration’s focus on eliminating “waste, fraud, and abuse,” stating it’s a provider issue, not family-related. “Medicaid isn’t a cash benefit, and families have no incentive for fraud,” said Schiano.
Schiano explained the rigorous process of verifying Cole’s needs to Medicaid every two months. “The claim that our children are getting unnecessary services is false; these allow him to thrive,” she argued.
Without Medicaid, Schiano fears bankruptcy, hospitalization, or institutionalization for Cole. “These services enable him to access education like his peers, which isn’t wasteful,” she emphasized.
—
Read More Pennsylvania News
