Aging Up And Aging Out

Transition of Care From Pediatric to Adult Healthcare System: Advocating for the Medically Complex Adolescent
amy henley

There are many facets to nursing but none as all-encompassing as advocacy. We can have all the clinical knowledge and expertise in the world, yet if we do not first advocate, we are lost to tasks. Prior to becoming a case manager, I spent many years in acute pediatric critical care, advocating for my patients, families, colleagues, students and new employees. Currently, as a case manager in a pediatric post-acute environment serving medically complex children from infancy to 21 years of age, most with lifelong medical support needs, I have a renewed appreciation for what advocacy entails. It is my belief that those of us in pediatric care do an excellent job of conscientiously informing, supporting, teaching and to a degree overprotecting our patients and families. However, true advocacy in the pediatric arena means it is inclusive of all the various stakeholders in a child’s life and their medical care. These stakeholders could simply mean a set of parents, a single parent and/or an extended family support system. These could also mean state-involved parties such as a foster family, state guardian or providers within a school system.

Pediatric medically complex patients enter our care environment at a variety of ages, many times related to the underlying cause of care need and other times because a medically complex child in fact grows up! The discharge disposition from an acute setting for medically complex infants and children looks far different than for an adult. These children are much more likely to be discharged to home with different iterations of in-home support. The same holds true for older children with some anecdotally noted decrease in a discharge home disposition associated with increasing age and body size. Those being cared for in their family’s homes often have significant case management needs, and for some family units, it quickly becomes a daunting setting. In these situations, the case managers find themselves assisting a family in navigating the healthcare environment and advocating for them at every turn. Those being cared for in the home are often then introduced to a post acute environment either in a respite situation or as an alternate placement. Placement challenges in the pediatric realm often stem from either difficulty in rendering care to a larger person or as a result of “aging out” of the homecare benefit at the age of 18. The 18- to 21-year-old can present either to a pediatric or adult post-acute facility. We must keep in mind one of the revisions to the Standards of Practice for Case Management in 2010 included the following: “Focusing on transitions of care, which included a client’s transfer to the next care setting or provider while assuring effective, safe, timely and complete transition.”1

When your medically complex pediatric adolescent patient is rounding the corner to adulthood, there is a need to transition your patient and their stakeholders into the adult healthcare system. That can be described as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health-care systems.”2 When looking at transitioning, it is interesting to note, “Transition readiness is the capacity of the adolescent and those in his or her primary medical system of support (family and medical providers) to prepare for, begin, continue, and finish the transition process. In contrast, transfer is a discrete event.”3 We must be sure we are not tackling this as an event but a process. There is support for this notion by the Maternal and Child Health Bureau and the National Alliance to Advance Adolescent Health, as evidenced by the cooperative agreement entitled Got Transition/Center for Health Care Transition Improvement, whose goal is “…to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families.”4 It is not, however, specific to the unique needs of the medically complex patient. All transition care planning should be comprehensive, taking into consideration each patient’s developmental needs, ensuring that care is also psychosocially relevant to the patient and stakeholders (geographic location is a factor to consider here) and suffers no interruption in care. Many times, this means coordinating not only placement in an adult long-term care facility for your patient but multiple handoffs to multiple adult subspecialists. We all know with multiple handoffs there is more risk of information loss, which we of course do all we can to mitigate. Truly, this is part of the core philosophy of the Standards of Practice for Case Management that states “…improving care coordination and reducing the fragmentation of the services the recipients of care often experience especially when multiple health care providers and different care settings are involved.”5

The challenges to seamlessly accomplishing this transition to all stakeholders’ satisfaction are numerous. When specifically focusing on the patient who has high care needs that may include tracheostomy care, ventilator dependence, mobility challenges, etc., just the availability of medically indicated adult care environments is one of the first challenges we face. This is in large part related to reimbursement challenges many of the adult facilities face within some of our Medicaid systems. Facilities are more accepting of patients with either minimal needs such as gastrostomy tube feedings or those with maximum needs than those in the middle. A patient with minimal needs requires less in terms of supplies, equipment and staffing hours that can be provided with the reimbursed payment the facility receives. The patient with maximum needs (specifically, a ventilator) has a far greater dollar reimbursement as that compensation is directly tied to hours on a ventilator per day. This results in greater challenges for transitioning patients who fall in the middle of the care needs spectrum even though in every way, their continued care is just as important.

Another challenge is family acceptance of the change in care environment. Many adult facilities can be of grander size than what the family is accustomed to. Care within facilities with a larger census becomes less intimate with slower response times to concerns and often communication challenges with staff. As mentioned earlier, we do a particularly good job with family involvement and communication, sometimes bordering on coddling, which is difficult to duplicate. These two things can prove to be overwhelming for families. It is our responsibility to proactively address these issues.

Much work is needed to assist these patients and stakeholders in their transition journey. This work will have a positive professional satisfaction impact on those of us working toward that successful transition. It is relevant to note that the need for these transitions has increased over time as a result of the many advances in medical technology leading to changes in care that have lengthened life spans of the pediatric patients with chronic conditions. We have not kept pace in our abilities to provide quality transitions with respect to volume of appropriate settings, ease of information sharing and economic funding to support this population’s continued care and maximization of potential. If it is true that “Systemic inertia, fueled by insufficient information about transition options and outcomes, helps maintain an outdated status quo,”6 then we must remain compelled to advocate for this population and their continued success within the adult healthcare system. It is necessary that we “promote discussion of transition issues, development of transition programs and thoughtful evaluation of such programs.”7 There must be discussions concerning the ongoing transition issues at the systems, local and national levels.

Amy Henley, RN, BSN, MSN/ED, RNC-NIC, is the clinical program specialist for NeuroRestorative 4 Kids in Las Vegas and Reno, Nevada. She is a graduate of Michigan State University with a BSN and from University of Phoenix with a MSN/Ed. Amy has vast experience in the pediatric healthcare arena, to include NICU, PICU, pediatric surgery and pediatric post-acute care. She holds a certification in High Risk Level III Neonatal nursing. Having been with NeuroRestorative 4 Kids for over five years, Amy serves a dual role within the business development and operations divisions. As a clinical nurse liaison working with community referral sources, patients and families, she coordinates admissions and plans care needs. Additionally, Amy serves the operations team with staff development and education in pediatric and neonatal nursing and streamlining operational processes.


1. Case Management Society of America (CMSA). 1995. Standards of Practice for Case management. Little Rock, Arkansas: CMSA
2. Blum RWM, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, & Slap GB. (1993). Transition from child-centered to adult health-care systems for adolescents with chronic conditions: a position paper of the Society for Adolescent Medicine. Journal of Adolescent Health, 14(7), 570–576.
3. Tuchman, L. K., Schwartz, L. A., Sawicki, G. S., & Brillo, M. T. (2010). Cystic Fibrosis and Transition to Adult Medical Care. Pediatrics, 125(3), 566–573.
5. Case Management Society of America (CMSA). 1995. Standards of Practice for Case management. Little Rock, Arkansas: CMSA
6. Blum RWM, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, & Slap GB. (1993). Transition from child-centered to adult health-care systems for adolescents with chronic conditions: a position paper of the Society for Adolescent Medicine. Journal of Adolescent Health, 14(7), 570–576.
7. Blum RWM, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, & Slap GB. (1993). Transition from child-centered to adult health-care systems for adolescents with chronic conditions: a position paper of the Society for Adolescent Medicine. Journal of Adolescent Health, 14(7), 570–576.

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