Medically complex pediatric patients require an interdisciplinary approach to community management and care coordination. When a child is hospitalized, the interdisciplinary team engages to assist parents with identifying barriers to taking and keeping their child safely at home post-acute care discharge. In an ideal world, children with medical complexities are discharged from the hospital to a stable home environment with parents equipped to provide the medical and psychosocial care needed to sustain optimal quality of life. The child and their caregivers will be connected to the appropriate providers needed for follow-up services and have needed DME and community resources upon discharge. In contrast, in the real world, case managers can be faced with assisting children with medical complexities who have unprepared parents and without social supports needed to discharge them home in the community successfully.
Children with special healthcare needs account for 1 out of every 5 children in the United States, according to the Centers for Disease Control and Prevention. Children with complex medical needs typically have frequent hospitalizations, creating stressors on the child’s caregivers and taxing the healthcare system. Discharges for these children include ensuring appropriately trained caregivers will be present in the child’s home to provide the necessary care, which oftentimes requires 24/7 management. The goal of discharge is for the child to return home to the love and safety of family with social supports in place to ensure continued recovery. When a child with medically complex medical conditions doesn’t have a place in the community to call home, the discharge plan is literally halted pending placement. The child must then remain hospitalized until the case manager is able to find a lower level of care that can safely provide the continued care needed. The inability to find appropriate placement drives costs of care. Increasing inpatient cost of care delivery then becomes the primary motive to make creating a viable discharge plan a priority.
Reasons for delayed discharges resulting from a breakdown in parental supports are varied. This population of children requires extra layers of support to be cared for in the community. Parents who decide to care for their children at home are not often prepared for the life-altering changes needed to function daily. Parents advocating for their children can become overwhelmed from having to seek out available community resources and assistance. Parents may have a difficult time maintaining employment in order to care for their child, creating financial hardships. Caregiver burnout can lead to a breakdown in the stable home environment needed to keep medically complex children home. Sometimes, it is during a hospitalization that parents may be forced to face the difficult reality that exploration of alternative placement options is in the best interest of the child. When the healthcare team acknowledges that a hospitalized child’s parents are not able to provide a stable home for their child diagnosed with medically complex conditions, the child can ultimately remain hospitalized even when they are medically stable until an alternative placement setting is found.
Discharging a medically complex child to the community is a collaborative effort. Medically complex can be defined as children with “multisystem, long-term diseases, and/or functional limitations that result in high care needs, high health care utilization, and often rely on medical technology” (Cohen). Technology-dependent children include ventilator dependence and tracheostomy dependence for airway management and gastrostomy tube dependence for nutrition and medication management. Collaboration is vital, making the role of care coordinators essential for this population that can be medically fragile. Children with medically complex chronic diseases will have multiple doctor visits. Coordination of the healthcare team involved is usually comprised of a primary care physician; multiple pediatric medical specialists; pediatric surgical specialists; rehabilitative therapists; community-based services to include home nurses, pharmacists, dieticians; and durable medical equipment to maintain health, maximize development and promote function. In addition to the medical team, managing pediatric patients with special healthcare needs in the community requires a family-centered approach. Unarguably, the child’s family is the center of support throughout the child’s life. When a child’s safety net of support fails during a hospitalization, case managers have to look at alternative community placement options. Discharging a child to a setting other than with their family, while not ideal, may be necessary because a hospital was never designed to be home for a child. Options for alternative discharge settings will vary based upon where the child lives in the United States. Case managers have to understand the resources available in the immediate vicinity but also be prepared to extend the searches statewide. Options for post-acute care transition can include pediatric long-term care facilities and medical foster care.
Pediatric Long-Term Care Facilities – Many cities around the country have facilities that provide long-term pediatric specialized care to children with medically complex needs. Children usually require skilled nursing services to meet admission requirements. Children needing skilled nursing services may have diagnoses that include complications of prematurity, bronchopulmonary dysplasia, short gut syndrome, oxygen dependency, traumatic brain injury, spinal cord injury, ventilator dependency, respiratory therapy needs, complex wound care, cardiac problems, chromosomal abnormalities, seizure disorder, and children in minimally responsive/comatose states. These facilities bridge the gap between acute care hospitalizations and transitions to home or foster care. Children in these facilities should have an interdisciplinary team (IDT) involved in the plan of care. The IDT can consist of the child, the parents, the physician, nursing, social worker, respiratory therapy, therapist (PT, OT, ST), dietician, recreational therapy, educational staff and the chaplain. These facilities usually provide transitional care for the children. Transitional care offers care across the continuum driven by the child’s medical and social needs. Children may eventually discharge to home or foster care once the caregivers are trained and demonstrate the ability to meet the needs of the child at home. Children may receive palliative and end-of-life care. Children sometimes go to these facilities for respite stays, offering the caregivers temporary relief of care. Children may find that these facilities become their new home when there are no other placement options available. Case managers may find that placing children in these facilities may be met with resistance. As a result of the Americans with Disabilities Act and the subsequent Supreme Court decision in Olmstead v. L.C., many states are denying or setting admission restrictions on pediatric long-term care facilities (Simpser). This decision sets the tone of ethical discussions. One can fall on either side of the discussion depending on the lens used to view what need the facility is meeting: if this setting is realized as institutionalizing children with disabilities versus realizing that children, like adults, need alternative placement options that are able to meet medical and social demands.
Medical Foster Care – Medical foster care is a placement option for children with medical complexities requiring discharge post hospitalization and when a child cannot be cared for by their parents. Foster placement consideration can include relative and non-relative homes. Placement discussion will involve foster families, caseworkers, biological families, legal consultants and clinicians. Legal implications for foster families are orchestrated at the state level. Foster parents are trained to meet the medical needs of the child and are incentivized at a higher reimbursement rate for accepting medically complex children. It is important to understand that unless parental rights are terminated or relinquished, foster families are usually allowed to determine when a child needs medical attention while biological parents usually retain the legal right to consent to medical treatment. Education is needed to ensure the child’s medical needs will be met by those with shared interests.
Considerations for discharging medically complex children safely and successfully post hospitalization must be taken seriously in order to prevent discharge failure or readmission. In many states, hospitals do not receive payments for patients who are readmitted within 30 days of discharge, so there are high-stakes incentives to get the process right. Case managers and care coordinators play a vital role in working with this population, their caregivers and support systems to ensure the child’s needs can be met in a healthy environment where the child can be loved and supported while simultaneously having medical needs met. Parents have to be supported in making decisions that are in the best interest of the child. Sometimes this decision includes allowing a child living with health challenges to live in an alternative placement setting, other than the parents’ home, that is designed to provide the needed care. Whether the decision is temporary or long term, the transitional living setting should be conducive to ensuring children with medical complexities don’t have to live in hospitals when they are medically stable to return to the community where they can be allowed to thrive.
REFERENCES
“Children and Youth with Special Healthcare Needs in Emergencies.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 16 Dec. 2019, www.cdc.gov/childrenindisasters/children-with-special-healthcare-needs.html.
Cohen E, Kuo DZ, Agrawal R, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127(3):529–538pmid:21339266
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Simpser, Edwin, and Patricia Budo. “Children and Young Adults with Medical Complexity: Serving an Emerging Population.” Https://Pediatriccomplexcare.org/, A White Paper Prepared for Centers for Medicare and Medicaid Services, 2016, pediatriccomplexcare.org/wp-content/uploads/2016/03/PCCA-CMSWhitePaper012716.pdf.
