Pennsylvania House committee hears families, providers and MCOs on pediatric home-nursing shortages and proposals to pay family caregivers

Members of the Pennsylvania House Human Services Committee held an informational hearing on home nursing shortages for medically complex children, hearing emotional firsthand accounts from parents, operational perspectives from providers and data and cautionary notes from Medicaid-managed-care representatives.

“Hannah Brown, a Westmoreland County mother and full-time caregiver, said her 11-year-old son Colton is trach- and ventilator-dependent and that “I wake up and that is my fear every day” — that a missed shift could be fatal. Brown told the committee she has provided round-the-clock skilled medical care for 11 years and that families often become the only consistent caregivers when nurses do not appear for authorized hours.

Megan Lukowski, a parent and public-health worker, and other witnesses described chronic gaps in home nursing: Lukowski cited, from her service on a MAC consumer subcommittee, an estimate that “nearly 30% of authorized pediatric skilled nursing hours consistently go undelivered,” leaving parents to fill shifts and causing financial and employment strain for families.

Provider witnesses said reimbursement and workforce supply are central drivers. Dina Pack, area director of clinical services and administrator at 365 Health Services, said home-nursing education and training do not prepare clinicians for complex pediatric home care and described episodes when parents had to cover multiple consecutive open shifts. Pack and other agency witnesses said current reimbursement levels and lack of Medicaid-funded overtime make it difficult for agencies to offer competitive pay and retain staff.

Bill Sapanski, representing Team Select Home Care, described an approach used in other states — sometimes called a family CNA or complex care assistant model — that trains and pays a parent or legally responsible caregiver to perform delegated tasks. Sapanski said such programs exist in several states and urged support for legislation he identified as House Bill 21 64 (and a senate companion, cited in testimony) to allow training, delegation and compensation for family caregivers.

Michelle Warner of Angels of Care and other agency leaders urged a combination of short- and long-term steps: raise reimbursement, add overtime and shift differentials, strengthen recruitment and nursing-school emphasis on home care, and use training/supervision models when agencies cannot fill authorized hours.

Emily Katz, executive director of Pennsylvania Medicaid Managed Care Organizations (PAMCO), cautioned that program expansion should be paired with standardized assessment and utilization controls. Katz said PHMCOs have observed pediatric shift-care costs rise more than 400% and caseloads grow roughly 150% (from about 3,400 cases in 2023 to over 8,600 in 2025), and she urged uniform criteria for determining hours of care and thresholds that would trigger additional documentation or review to protect equity and program integrity.

Committee members asked for more data and practical solutions. Representatives pressed witnesses on whether bills would address school-day nursing gaps and whether increased reimbursement would close recruitment shortfalls. Witnesses recommended immediate policy levers such as Medicaid-funded overtime, pay differentials for nights/weekends/holidays, and limited family-caregiver compensation paired with training and supervision.

No formal votes or amendments were taken; committee chairs said they will continue the discussion and urged members to conduct home visits and consider budget and regulatory options that balance child safety, access to care and fiscal stewardship.

The committee adjourned without a vote and made no immediate changes to pending legislation.