Pediatric Respite Homes: A Call to Action

Approximately 1 million children with medical complexity (CMC) live in the United States,1 and although their health care needs comprise 40% of child health costs,1 most of their care is provided at home by their parents and other family caregivers. Around-the-clock care encompasses direct medical care, including administration of medications and nutrition, care coordination and supplies management, emotional work of vigilance and worry, financial planning, and more. This intensive caregiving offers meaning and joy for many of those parents, yet its constancy can threaten their emotional well-being, physical health, and financial security,2 presumedly negatively influencing their capacity to provide care across decades. Respite is planned or emergency services that allow a parent caregiver time away from caregiving responsibilities to confer measurable improvement in the well-being of the parent, child, and/or family system.3 Parents of CMC prioritize respite as one of their greatest unmet needs.4 A national survey of 148 United States hospitals found that 79% of them reported their patients’ family caregivers lack access to respite.5 While respite services do exist, respite need is infrequently addressed, particular to each family, and thus challenging to fill.4Respite care can take many forms in terms of setting (in home, out of home), duration (hours, overnight, weeks), level of care (household support, behavioral support, skilled nursing), and payment (out-of-pocket, philanthropic, government programs, insurance reimbursement)—and all of these services are in short supply.6 Out-of-home, overnight respite (defined as 48 hours to 1 week for up to 1 month per year) with skilled nursing care is particularly limited. Pediatric long-term care facilities have historically had a small number of beds reserved for overnight respite, and the increase in demand for residential beds during the COVID-19 pandemic has resulted in persistently fewer available respite beds. CMC end up hospitalized because there are few other settings equipped to support their care needs, particularly children supported by medical technologies that sustain their lives (eg, tracheostomy and mechanical ventilation).6 Hospitalization is often the only source of respite for parents; one study found that 14% of parents reported using hospitalization for respite in the past.4The ARCH National Respite Network and Resource Center leads the call for respite access across the lifespan, promoting respite research, advocacy, and program development. Its “Research Agenda for Respite Care” lays out 6 priorities for respite research: address foundational methodologic concerns; research individual, family, and societal outcomes; conduct cost-benefit and cost-effectiveness research; investigate system changes that improve respite access; explore how to improve respite provider competence; and conduct translational research that informs respite policy and practice.3 Notably, one key respite model is often sidelined in conversations—pediatric respite homes. In the United Kingdom, 54 free-standing pediatric respite homes provide overnight, skilled nursing-level respite care for its population of <100 000 children with serious illness and medical complexity and their families.7 In contrast, in the United States, there is a very limited network of pediatric respite homes for the country’s 1 million CMC,1 with only 7 fully functional nonprofit homes, leaving over 93% of families with no access.8We—the medical and community-based teams caring for these families—should consider this model for 4 reasons: (1) the high demand for out-of-home respite care for children with medical complexity,6 (2) the scarcity of overnight respite services,8 (3) empirical evidence that families who use respite home-based services value them and want more than are currently available,9 and (4) the fact that free-standing pediatric respite homes deliver a significant portion of available overnight respite services in the United States. Advocacy and research go hand in hand; data demonstrating how this model benefits CMC and their family caregivers is needed to drive policy change and program development. Specifically, family-centered, caregiver-driven research should examine respite home cost-effectiveness and the influence of respite home-based services on psychosocial and physical health outcomes for both CMC and caregivers, on family caregivers’ work of care, and on the overall value of these services for the health system. Understanding the wide variety of licensing and reimbursement structures that underpin these homes is essential.4 Only with this information can advocacy lead to the effective integration of this respite care model into health care policy and programs, provided it is cost-effective.The National Center for Pediatric Palliative Care Homes (established in 2022 by Jonathan Cottor, a cofounder of the Phoenix-based Ryan House and a bereaved parent) has compiled data from 5 existing United States pediatric respite homes (as of 2022–2023) that meet the following eligibility criteria: community based, free standing, and with dedicated pediatric respite care for children with medical complexity. These data, presented in Table 1, characterize the services provided and structures of the programs. The homes serve relatively local geographies, span 6700 to 15 000 square feet, and include 5 to 10 bedrooms and 1 to 3 family suites. All 5 homes provide overnight respite services, and 3 also offer end-of-life/hospice services. While each of these community programs began heavily dependent on charitable philanthropy, most are beginning to access some level of Medicaid reimbursement,10 with one achieving rates that will support close to 80% of their sustainability costs.To inform advocacy for policy change and program design, we should build the science of respite care. Doing so requires identifying all models of both in-home and out-of-home respite being accessed by families—including pediatric respite homes—and then studying them rigorously to characterize and quantify their impact on children, their families, and the health care system.We greatly appreciate the collection and contribution of data from the respite homes, including A Rosie Place for Children, Crescent Cove, George Mark Children’s House, Ryan House, and Almost Home Kids.