Last month, we reported that Pennsylvania intended to end its years-long practice of paying parents who provide home health aide care to their own children. According to state officials, the program needed to end once the pandemic ended due to lack of approval from the federal government for it to continue. When it was discovered that Pennsylvania intented to end the program, advocates, families, and other stakeholders urged the state to continue the program in light of the continued and ever-increasing direct care worker shortage.
Following this advocacy as well as many discussions between the state Department of Human Services (DHS) and the federal government, Pennsylvania received approval from the feds to continue paying parents as home health aides. DHS will be sending notices to families letting them know the program will continue within the next month. Additional details about how the program will operate will also be forthcoming from DHS.
Throughout the public health emergency (PHE), and in some cases even prior to the PHE, some parents in Pennsylvania have received payment for providing their own children with home health aide services under our Medicaid program. Paying parents as home health aides is an invaluable practice that has benefited hundreds of children with complex health conditions, allowing parents to financially support their families while giving children the care they need during a nationwide direct care worker shortage.
When Pennsylvania officials announced in January their intent to end this practice, the Pennsylvania Health Law Project (PHLP) and advocates from Disability Rights Pennsylvania, the Imagine Different Coalition, and the Pennsylvania Homecare Association wrote a letter to federal Medicaid officials at the Centers for Medicare and Medicaid Services (CMS) urging them to continue funding this program and outlining the legal basis for doing so.
While we do not yet have details on how the state will carry on this program, it appears that federal funding for it is no longer in jeopardy. We’re hopeful that this victory for Pennsylvania families will be part of a larger, integrated approach to addressing the direct care worker shortage and ensuring that children with significant disabilities live healthy, full lives at home surrounded by their loved ones.
We appreciate the support of all our partners in this effort, each of whom worked tirelessly to preserve this program. We also commend DHS leadership for listening to families and advocates, and for working to achieve this solution that will benefit so many.
We will share more details and developments as we learn them.