Families across Pennsylvania are struggling to find home health care for their medically fragile family members, as the industry faces a severe nursing shortage, inadequate training procedures, low Medicaid reimbursement rates, high turnover rates and a lack of funding for overtime and differential pay.

An estimated 400,000 children and adults receive in-home care services and more than 112,500 home health care shifts go unfilled every month due to staffing shortages, according to the Pennsylvania Homecare Association, a trade organization that represents more than 700 home care, home health and hospital providers across the Commonwealth. Family caregivers in Pennsylvania provide an estimated $32.5 billion in unpaid care annually, according to a report from researchers at Columbia University’s Mailman School of Public Health.

Moms press for changes

Hannah Brown and Meghann Luczkowski were the first panelists to testify before the House Human Services Committee at a Tuesday hearing focused on the challenges facing families with children with complex medical needs. Both women are mothers to medically fragile children. Brown’s son is living with Spinal Muscular Atrophy, and Luczkowski’s three children each have varying levels of specialized health care needs.

Brown shared that the current state of complex care leaves families in unstable financial situations as they quit their jobs to provide full-time care for their family members. She is advocating to be recognized as a complex care assistant (CCA) under House Bill 2164 and Senate Bill 1041, which would allow her and other family members statewide to provide nursing services to their children and to do so at an increased Medicaid reimbursement rate.

“At the end of the day, parents like me … are providing skilled medical care, responding to emergencies and keeping our children safe every hour of every day,” she said. “We are saving the Commonwealth money while helping our children remain where they belong — at home with their families. Paid parent caregivers are not asking for special treatment. We are asking for recognition and support for the essential care we already provide.”

HB 2164, sponsored by Rep. Bridget Kosierow­ski, D-Lackawanna, and SB 1041, sponsored by Sen. Rosemary Brown, R-Monroe, both create a Medical Assistance program for CCA services, allowing a family member of an eligible recipient to become certified and provide home health-based care through a home health agency under a Medicaid reimbursement.

Luczkowski is advocating for House Bill 1068, which, similar to the other two bills, creates a licensing system for family members to provide paid skilled care to designated children with medical needs, under the supervision of a licensed agency and the State Board of Nursing. Rep. Brandon Markosek, D-Allegheny, is the bill’s sponsor.

Luczkowski said though she never wanted to be her son’s paid caregiver, the reality is that families cannot rely on home health care to care for their medically fragile children.

“Until Pennsylvania is ready to rebuild a system of home health care designed around the needs of the most medically complex people, compensation for the extraordinary medical care families provide is the right thing to do. This system must stop banking off the backs of parents desperate to keep their children out of institutions,” she said. “Any legislation for complex care compensation must include the children with high-acuity care like trach-dependence like HB 1068 does or else we will have, once again, left the most vulnerable children and families behind.”

Luczkowski also said that parents often have to prioritize presence over quality of care due to the complexity of their children’s needs.

“We have a lot of families encountering what we call ‘warm body syndrome,’ which is where it’s better to have a warm body staying awake and watching your child and letting you know when there’s an emergency rather than having no one and you being awake all night,” she said. “That’s not safe. It’s not fair.”

Homecare agencies weigh in

Home health care agency representatives also spoke in support of the proposed legislation, saying that formally training, supervising and compensating parents as CCAs is a necessary, immediate solution when staffing shortages prevent agencies from fulfilling authorized nursing shifts.

“These families know how to care for their children often better and have more knowledge about the critical care that’s happening in their own home than we as nurses do,” said Deanna Pack, the area director of Clinical Services at 365 Health Service, LLC.

Current Medicaid reimbursement rates are insufficient to compete with hospitals and long-term care facilities, testifiers said. Agencies are unable to pay nurses competitive wages to perform high-acuity care, leading to the current staffing crisis. For example, the current reimbursement rate for adult skilled nursing services is $44.08 an hour, with the agency taking a percentage of the pay to run their facilities, according to Pack.

Families caring for medically fragile children are under “enormous stress,” but lawmakers need to ensure that the legislation is both adequately supporting families while ensuring that the services are being provided “consistently, appropriately and in a manner that preserves access for those with the greatest clinical need,” said Emily Katz, the executive director of Pennsylvania’s Medicaid Managed Care Organizations (PAMCO). PAMCO represents the Commonwealth’s seven Physical HealthChoices Managed Care Organizations (MCOs) that contract with the Department of Human Services to administer the state Medicaid program, HealthChoices.

Katz said there has been a rapid increase in pediatric shift care costs.

“Between 2023 and 2025, and continuing until today, cost associated with pediatric shift care services and HealthChoices has increased over 400%, with caseloads increasing 150%,” she said. “All while HealthChoices membership has decreased by over 700,000 members, or 25%.”

Katz also said there is a lack of consistent statewide framework for determining hours of care. The managed care groups would like to see the state implement a uniform assessment criteria, including age-appropriate Activities of Daily Living criteria to support equitable outcomes and program integrity. She urged the Human Services Committee to carefully consider any further program expansion until standardized oversight and additional assessment tools are established.

These testimonies will help inform legislators’ deliberations as the bills continue to move through the legislature. HB 2164 and HB 1068 are under consideration in the House Human Services Committee, while SB 1041 is under consideration in the Senate Health and Human Services Committee.