A call to action: An urgent need for national efforts to expand access to pediatric home healthcare

In this issue, Simpson et al. describe in persuasive earnest the alarming and inequitable challenges children with invasive long-term mechanical ventilation (LTMV) face across the American Southeast to secure home nursing.1 With rare exception, this lack of qualified pediatric home nursing is a national crisis, and unfortunately, not new. For over 40 years, families have repeatedly alerted us about systematic barriers to pediatric home healthcare.2 While cries for more home nursing renew, our hospitals have engaged in a decades-long "normalization of deviance"3 in which we train unlicensed family caregivers to provide unpaid, highly-skilled nursing care for potentially unlimited hours, a scenario that would otherwise be deemed highly unsafe by any employee or patient-safety regulatory standards.4 We applaud the authors for their calls to state actors to do more to ensure sufficient home nursing wage and training. As they rightly point out, home healthcare is a legally mandated Medicaid service for children. However, it is often less well understood that children have a civil right to receive long-term healthcare at home under the American with Disabilities Act.5 Hospitals primarily focus on a safe and speedy discharge misses this important obligation. We are unaware of any hospital with systematic processes to monitor children's receipt of home nursing after discharge to ensure the children's continued safe care either by hospital readmission or by ensuring home nursing is immediately restaffed. This alone represents an inherently contradictory and hypocritical existing care model in which we focus on a safe discharge home but not a safe life at home. Facilities best serve children when built to meaningfully train and support families to care for their child, offer respite care in children's actual communities, and provide long-term care as a meaningful alternative to a child receiving fully staffed home nursing. Though establishing more nursing facilities as "transitional" care may be a tempting solution to release pressure off hospitals with bed shortages, building more facilities does not expand the home nursing workforce. Most facilities are paid by daily bed arrangements and are often financially disincentivized to transition children home. Children with LTMV account for far less healthcare spending than adults. In an era of strained budgets and competing priorities, state officials have little knowledge of this population's needs or incentive to change the status quo. A call to action is needed within our own community of clinicians to lead change. Technological solutions can support but not replace the skilled workforce that is needed. As experts, we must urgently partner with hospital leadership, government affairs offices, home healthcare agencies, and (most importantly) families to elevate their voices (e.g., government testimonies), expand home workforce numbers (e.g., scope of practice law expansion, community training programs, payment reform) and improve the home workforce quality (e.g., telemedicine supports, high quality-simulation training). If not now, when? If not us, who? Persistence will be needed to address this crisis. Let not another 40 years pass by without children with LTMV having the care they need to not just discharge to but live at home. The authors declare no conflict of interest. Carolyn Foster: Conceptualization; Writing - original draft; Writing - review & editing. Holly Hòa Võ: Conceptualization; Writing - review & editing. Avani V Shah: Conceptualization; Writing - review & editing. Dr. Foster's time was funded under grant number 1R18HS029638-01 from the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services (HHS). The authors are solely responsible for this document's contents, findings, and conclusions, which do not necessarily represent the views of AHRQ. Readers should not interpret any statement in this report as an official position of AHRQ or of HHS. The funder/sponsor did not participate in the work. Not applicable.