News

Published by TRIBLIVE, Saturday, June 27, 2026

Children belong with their families, not in hospitals or institutions. Yet across Pennsylvania, families of children with complex medical needs are facing an impossible situation due to a shortage of pediatric home care nurses, particularly within Pennsylvania’s Medical Assistance (MA) program.

Many parents provide round-the-clock care with little relief. They stay awake all night then go to work. Some have left their jobs. Others face an unimaginable decision: placing their child in a facility.

The tragedy is that most of these children have been authorized to receive MA-funded nursing care at home. The MA program and its managed care organizations authorize nursing hours and set payment rates, but when no nurse is available, families are left to provide the care themselves without compensation. This is not parenting. This is medical care.

Achieva supports the Families Providing Extraordinary Care Act (House Bill 1068), which would allow family members to be compensated for skilled care. Any alternative legislation must include all children with complex medical needs, especially those with tracheostomies and ventilators. These families are highly trained, often teaching nurses their child’s needs. Family caregivers should be paid LPN rates so family care supplements — not replaces — the nursing workforce.

Pennsylvania must also increase rates for pediatric home care nurses. Achieva supports a Pennsylvania legislative study to look at the issue, but higher rates are needed now.

These children are at risk for long-term institutionalization. We need policies that support families so children can remain where they belong — at home, and at far less cost than institutional care.

Mary Hartley
South Side

The writer is senior vice president of Achieva and president of The Arc of Greater Pittsburgh.