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Home Again: Evolution and Future of Pediatric Home Health Care

July 11, 2023

Commentary From the AAP Section on Home Care

The American Academy of Pediatrics (AAP) established the Section on Home Care (SOHCa) in 1994 to educate pediatricians about pediatric home health care, which delivers health-related services, equipment, and supplies in the home. Home health care supports the goal of children living and thriving at home with their families, and so is especially important for children with chronic medical conditions and disabilities. Our mission is to serve as a national resource to providers and families for knowledge and expertise in pediatric home health care and to advocate for high quality, cost-efficient services at home. SOHCa was the first Section in the AAP to engage families and establish a Parent Advisory Group that has today evolved to the Family Partnerships Network (FPN).  We chose studies and statements which highlight the increasing need for access to high quality pediatric home health care so that children can be as healthy as possible and live their lives to the fullest in their communities.

Home Again: Evolution and Future of Pediatric Home Health Care

Elaine Lin, MD1, Amy Houtrow, MD, PhD, MPH2, Carolyn Foster, MD, MS3

Affiliations: 1Division of General Pediatrics, Icahn School of Medicine at Mount Sinai, New York, NY; 2Department of Physical Medicine and Rehabilitation, University of Pittsburgh, Pittsburgh, PA; 3Division of Advanced General Pediatrics and Primary Care Pediatrics, Feinberg School of Medicine, Northwestern University, Mary Ann & J. Milburn Smith Child Health Research, Outreach, & Advocacy Program, Ann & Robert H. Lurie Children’s Hospital of Chicago

Highlighted Article From Pediatrics

Throughout history, people with disabilities, including children, have experienced discrimination, stigmatization, and ostracism.1 For much of the 20th century, the institutionalization of children with disabilities was commonplace and often encouraged by physicians.2 Caring for children with disabilities and complex medical needs in the home is a concept that was reinvigorated in the mid-20th century. Centerwall et al in 1962 described one of the earliest comparisons of children with trisomy 21 (the term “mongolism” was used in this publication, as were other terms that are now considered to be highly offensive and derogatory) cared for in the home versus outside of the home.3 The article highlights how early institutionalization was under question given the growing emphasis on the importance of maternal-child interaction on physical and mental development. This study raised the potential for out-of-home placement of children with disabilities to cause harm and helped facilitate the conversation of what support families may need to care for their children at home.

Living at home became a more realistic option for pediatric patients when legislature from the federal government (including the Medicare and Medicaid Act [1965], the Early and Periodic Screening, Diagnostic, and Treatment provision [1967], the Rehabilitation Act [1973], the Katie Beckett Wavier [1986], the Americans with Disabilities Act [1990] and the Olmstead decision [1999]) acknowledged the rights of families to have access to home health care services.4 As medicine and technology advanced and the needs of a growing population of children with complex chronic illness became apparent, important shifts in health care delivery occurred. In the 1980s, work done by Stein et al created a pediatric home care program that provided comprehensive interdisciplinary care to children with chronic illness.5,6 Using a biopsychosocial approach to care, the group aimed to care not only for the child but the entire family unit through education, advocacy, and social support in addition to health care. They found that families enrolled in the home care program versus usual care were more satisfied with care and witnessed improvement in the child’s psychosocial adjustment as well as fewer psychiatric symptoms among mothers. As a result, the AAP formed an ad hoc Task Force on Home Care of Chronically Ill Infants and Children and released guidelines for home care in 1984, which were revised in 1995.7,8 Both statements proposed that home care for children with chronic disease or frequent hospitalizations offered advantages to patients and families and encouraged research to determine the cost-effectiveness and effects of home care programs.

Several studies in the past 2 decades have highlighted the importance of home health care, and the effects of lack of home care, in medically vulnerable populations. Gay et al in 2016 conducted a retrospective matched cohort study of children receiving home nursing services after hospital discharge. This study suggested that children discharged with home health care experienced lower readmission rates, reduced length of stay, and decreased hospital costs over the following year.9 Despite the fact that the 2,783 children receiving home health care had a higher prevalence of complex conditions and technology assistance, they still had lower hospital resource use compared to matched controls. Another landmark study done by Maynard et al in 2019 described the extent to which children with medical complexity had delayed hospital discharges primarily due to unavailability of home nursing.10 The prospective study, focused on 4 children’s hospitals in Minnesota, found among a cohort of 185 children with medical complexity, home nursing shortages delayed discharge by 1,582 days at an additional estimated cost of $5.72 million. Taken together, these 2 studies demonstrate that home health care has potential to reduce certain health care utilization metrics, and that the lack of access to home health care increases length of hospital stay and medical costs.

Although access to home health care is federally mandated, the availability and provision of home health care services is highly variable and inconsistent. For commercially insured children with medical complexity, Rasooly et al in 2020 found in a 4-year data set that state-to-state differences existed in the proportion of patients receiving home care nursing posthospital discharge (range 3.4%-19.2%) as well as in the median number of home care nursing days per recipient (6.6-24.5 days).11 Sobotka et al in 2022 recently published an analysis of Medicaid patients younger than 18 years of age who received home health care and found that about one-third of the population was cared for by non-nurses, suggesting that the workforce of home care providers is highly variable.12 Children who require technology assistance account for almost 75% of all home health care spending, and almost one-third received care from non-nurses. The quality of home health care providers and services has been inadequately examined in pediatrics. These studies emphasize the need for further investigation and the potential need for quality improvement projects.

The AAP advocates for home health care that is integrated with the medical home and that embraces community-based supports and care coordination with the goal of allowing children to thrive in their homes with their families.13-15 The articles highlighted here have drawn attention to the importance of home health care and the need to further understand why our system has such inconsistency in delivering it to patients and families who need it. Despite the growing population of children with medical complexity who have disabilities, families continue to report having unmet home care needs.16,17 Included in the challenges to advocate for more home health care is the need for further research on how to assess quality, determine eligibility and quantity, and understand how home care truly affects overall healthcare utilization and costs.18 The concept of providing care at home is not novel, yet it is not a consistently available high-quality resource to our pediatric population, especially for children with medical complexity. Workforce shortages in pediatric home health care stem in part from inadequate Medicaid payments and lack of training and support for home health care providers.18 As the demand for pediatric hospital beds increases in the face of a limited supply, children will benefit from more innovative care delivery models centered in the home. New opportunities to use telehealth and remote monitoring may allow some bridging of home health care but will require payers to acknowledge the value of and pay for these modalities.

The time for pediatric home health care to truly advance is now—we have identified the gaps and the likely positive effects but we need more evidence to determine which interventions best serve children, their families, and health systems. Research articles in the last 2 decades have only pointed out the problems, but we have not had any studies to date that have rigorously assessed the effects of pediatric home health care. More research that partners both with home health care experts and with families with lived experience will be vital to improve implementation and efficacy. Policymakers can assist by advocating for payments for home health care services that will nurture an adequate workforce with the appropriate skills to deliver higher quality care.14 Without a stronger commitment to serving children with disabilities and complex medical needs in their homes, we will not achieve the Healthy People 2030 goal of reducing the proportion of people with developmental disabilities living in large congregate care facilities.19 Evidence-based models and adequate service payment are required to improve services for families and bring health care back home again.  


  1. Nielsen KE. A Disability History of the United States. Boston: Beacon Press; 2012
  2. Kelly NK, Menolascino FJ. Physicians’ awareness and attitudes toward the retarded. Ment Retard. 1975;13(6):10-13
  3. Centerwall SA, Centerwall WR. Home care of mongoloid children. Pediatrics. 1962;30:1011-1012
  4. Perkins J, Agrawal R. Protecting rights of children with medical complexity in an era of spending reduction. Pediatrics. 2018;141(suppl 3):S242-S249
  5. Stein RE, Jessop DJ. Does pediatric home care make a difference for children with chronic illness? Findings from the Pediatric Ambulatory Care Treatment Study. Pediatrics. 1984;73(6):845-853
  6. Jessop DJ, Stein RE. Who benefits from a pediatric home care program? Pediatrics. 1991;88(3):497-505
  7. Ad Hoc Task Forces on Home Care of Chronically Ill Infants and Children. Guidelines for home care of infants, children and adolescents with chronic disease. Pediatrics. 1984;3(74):434-436
  8. Committee on Children With Disabilities. Guidelines for home care of infants, children, and adolescents with chronic disease. Pediatrics. 1995;96(1):161-164
  9. Gay JC, Thurm CW, Hall M, Fassino MJ, et al. Home health nursing care and hospital use for medically complex children. Pediatrics. 2016;138(5):e20160530
  10. Maynard R, Christensen E, Cady R, et al. Home health care availability and discharge delays in children with medical complexity. Pediatrics. 2019;143(1):e20181951
  11. Rasooly IR, Shults J, Guevara JP, Feudtner C. State Variation in posthospital home nursing for commercially insured medically complex children. Pediatrics. 2020;146(2):e20192465
  12. Sobotka SA, Hall DE, Thurm C, Gay J, Berry JG. Home health care utilization in children With Medicaid. Pediatrics. 2022;149(2):e2021050534
  13. Friedman SL, Norwood KW Jr, Council on Children With Disabilities. Out-of-home placement for children and adolescents with disabilities—addendum: care options for children and adolescents with disabilities and medical complexity. Pediatrics. 2016;138(6):e20163216
  14. Simpser E, Hudak ML, Section on Home Care, Committee on Child Health Financing. Financing of pediatric home health care. Pediatrics. 2017;139(3):e20164202
  15. Elias ER, Murphy NA, Council on Children With Disabilities. Home care of children and youth with complex health care needs and technology dependencies. Pediatrics. 2012;129(5):996-1005
  16. Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med. 2011;165(11):1020-1026
  17. Feeley CA, Turner-Henson A, Christian BJ, et al. Sleep quality, stress, caregiver burden, and quality of life in maternal caregivers of young children with bronchopulmonary dysplasia. J Pediatr Nurs. 2014;29(1):29-38
  18. Foster CC, Agrawal RK, Davis MM. Home health care for children with medical complexity: workforce gaps, policy, and future directions. Health Aff (Millwood). 2019;38(6):987-993
  19. National Academies of Sciences, Engineering, and Medicine. Appendix E: Department of Health and Human Services Proposed Objectives for Inclusion in Healthy People 2030. In: Leading Health Indicators 2030: Advancing Health, Equity, and Well-Being. Washington, DC: The National Academies Press; 2020


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