Pediatric Annals

Special Issue Article 

Lessons Learned, Best Practices: Care Coordination for Children with Medical Complexity

John Maypole, MD; Tiffany Gavin, MBA; Mary Ann de Banate, MD; Matthew Sadof, MD


Although care coordination has long been established in the health care system in the United States, too often it may compete or work at cross purposes with care teams serving patients and families. Care coordination is a team sport that requires strong clinician-family partnerships as well as adequate time and resources to be done effectively. We incorporate the latest literature to offer clarity for identifying, coordinating, and funding care for children with medical complexity (CMC), the most medically fragile, high-cost subpopulation of children and youth with special health care needs. Algorithms for identifying CMC exist. Calculation of the cost of care for CMC is confounded by cost shifting to families and the variable course of illness and aging in this heterogeneous population. Multiple studies of different sizes have reported similar care coordination team structure, staffing ratios, and cost ranges. We describe models for funding this work and how they can be tailored to individual practice environments. [Pediatr Ann. 2020;49(11):e457–e466.]


Although care coordination has long been established in the health care system in the United States, too often it may compete or work at cross purposes with care teams serving patients and families. Care coordination is a team sport that requires strong clinician-family partnerships as well as adequate time and resources to be done effectively. We incorporate the latest literature to offer clarity for identifying, coordinating, and funding care for children with medical complexity (CMC), the most medically fragile, high-cost subpopulation of children and youth with special health care needs. Algorithms for identifying CMC exist. Calculation of the cost of care for CMC is confounded by cost shifting to families and the variable course of illness and aging in this heterogeneous population. Multiple studies of different sizes have reported similar care coordination team structure, staffing ratios, and cost ranges. We describe models for funding this work and how they can be tailored to individual practice environments. [Pediatr Ann. 2020;49(11):e457–e466.]

Our primary objective is to help providers identify the essential elements needed to provide successful care coordination services for children with medical complexity (CMC) within their practice and/or by collaborating with established complex care programs.1 We survey common definitions of CMC and recently developed population health tools used for their identification and for care management, current best practices for care management and support, and emerging alternative payment models to support care for CMC. Challenges experienced by caretakers and care teams in addition to strategies for sustainability and success for those launching or optimizing an existing program must be understood and considered. Additionally, we offer strategies for best practices for the safe care of CMC during the novel coronavirus pandemic.


Approximately 15% to 18% of the children and youth in the United States have special health care needs that associated with one or more chronic diseases or conditions.2 A growing subgroup of these children may be regarded as those considered “medically fragile,” using health care and health services more than their peers who are neurotypical or generally healthy.2 These CMC, as defined by Cohen et al.,1 have some of the following qualities: increased hospital- or community-based service needs, technology dependence, polypharmacy, and the need for extensive home-based services for activities of daily living. These children are more costly to care for, their risk of hospitalization is higher, and they require more coordination of the many facets of their complex care.

CMC comprise 0.4% to 0.7% of all children in the US (approximately 320,000-560,000).3 As has now been widely researched and documented, the CMC population and the cost of their care continue to grow yearly; CMC comprise 6% of the pediatric Medicaid population and 40% of the dollars spent by Medicaid on those patients.3,4 For pediatric academic medical centers, these children may represent up to 80% of the total inpatient hospital days.3,4

Tools for Identification of CMC

Methods used to identify CMC are largely based on the International Statistical Classification of Diseases and Related Health Problems, 10th revision (ICD-10)5 diagnosis and procedure codes. Population health programs or analytic engines sort patients and stratify them further using utilization markers, including emergency department and specialty visits, hospitalizations, and/or comorbidities (Table 1). Although these tools can help health systems budget resources for a population on an annual basis, real-time allocation of support to CMC and their families, who may have episodes of severe illness between intervals of medical stability, requires a more time-sensitive approach.

Available Algorithms for Identifying Children with Medical Complexity

Table 1.

Available Algorithms for Identifying Children with Medical Complexity

In Practice: from Individual Task Completion to Coordinated Care

Practices must stratify areas of need and care requirements to effectively build care plans and access the proper expertise for patients who are medically complex. The International Classification of Functioning, Disability, and Health provides a helpful, validated framework for understanding these domains for adults with disabilities. Applying this framework to CMC, a child's condition is considered using five different areas of need: (1) body function and structure, (2) activities, (3) participation, (4) environmental, and (5) intrinsic personal factors. Table 2 shows how this framework can be used to structure CMC care within these domains.6

International Classification of Functioning, Disability, and Health Framework of CareInternational Classification of Functioning, Disability, and Health Framework of Care

Table 2.

International Classification of Functioning, Disability, and Health Framework of Care

Table 3 illustrates how this framework was operationalized in a care coordination program to design distinct workflows, as well as to establish roles and responsibilities to ensure tasks are completed and tracked in an efficient, timely manner supporting handoffs between team members.7

The Core Team

Table 3.

The Core Team

The Process of Care Coordination

Care coordination of CMC is particularly challenging given their care may be fragmented across multiple offices, hospitals, and health systems. Privacy mandates and lack of interoperability between electronic medical records and data systems further disrupt timely and safe communication.8 Parents and caretakers must fill the gaps as they “relentlessly plan, track, navigate, learn, manage their care network, and try to keep themselves up to date with their children's history, current status, and future plans; doing so with no single source of information.”9 In a focus group of seasoned care coordinators, parents, and health care providers, the critical tasks of effective complex care coordination were identified and are detailed in Table 4.

Components of Care Coordination

Table 4.

Components of Care Coordination

Shared plans of care (SPOC) address some of these concerns and clarify the details, roles, and responsibilities of the complex care team.10 Developed from in-person interviews and chart examinations, the ideal SPOC maps a patient's medical and psychosocial issues within the context of the family and household. The SPOC provides a compilation of data in the electronic medical record, collating key resources to ensure wellness and contingency plans for episodic and emergency care. The essential elements of the SPOC are listed in Table 5. We recommend that to be sustainable, SPOC be done in plain language, using the abbreviated framework of a clinician “sign out” for use by parents and clinicians alike. When possible, non-English versions should be made for non-English speakers. Service use and patient adherence may be tracked and monitored, viewing the SPOC's wellness and adherence to “sick day” guidance as an element of quality assurance and harm prevention.

Shared Plan of Care: Critical Core Elements

Table 5.

Shared Plan of Care: Critical Core Elements

Technology companies offer great potential to bring value and enhance the care of CMC by leveraging growing patient and caregiver technological savvy and increasing smartphone access. Clinicians and health systems, meanwhile, must address the costs of data security, software, and system upgrades and modifications. In current practice, solutions continue to require the use of technological “workarounds” that facilitate care coordination. Although patient portals hold high promise for engagement, as designed they continue to offer cumbersome interfaces that limit patient activation. We challenge and encourage information technology developers to partner with large health systems and work directly with families and providers to reap the benefits of enhanced care quality through integration into the primary electronic medical record. Such integration will allow for improved data analytics, task tracking, and follow-up notifications that helps assess both the return on the information technology investment and support a value-based system.

Cost of Care Considerations

Given the high cost of caring for CMC, interventions targeting this group may compete with limited resources shared with the larger health system serving all children. To demonstrate the effect of interventions with CMC, workflows must connect clinical practice and operations to appropriate metrics, needs assessments, and data analytics. Clinically informed teams should work concurrently to identify what issues are actionable, so that outcomes can be realistically measured and appropriately attributed to the intervention. Some CMC have conditions and needs that lead to persistent and difficult-to-change fixed costs, such as technology dependency, degenerative syndromes, or chronic respiratory illness.11 CMC may also have long-term (potentially modifiable) costs attributed to care coordination or social determinants of health challenges such as food insecurity, housing, transportation, or medical literacy.12

Hidden Costs That Affect Families

Since the 1960s, medical advancements have increased the pressure to use home-based care for CMC. Proponents argue it increases the child's and family's quality of life while containing costs. This trend, however, increases a family's burden of care and may do so beyond their capacities.12 Consequently, many households must become competent in skills rarely found outside of medical areas, including operation of medical devices, care coordination, facilitation of communication between all involved in the child's care, and managing insurance and contracted services related to their child's needs. Additionally, workforce issues create hidden costs and challenges to even health-literate patients and families, including service gaps (eg, home nursing shortages), and the opportunity costs faced by caretakers foregoing employment opportunities to administer care for their child and/or to navigate health systems.

Recently, investigators described this uncompensated work as “replacement costs.”13 Home care results in out-of-pocket yearly labor expenses of $6,400 (skilled labor) or $2,100 (unskilled labor) per child with medical complexity, respectively.13 The foregone earnings for caregivers staying home took more than 5 hours per week, resulting in $17.6 billion in foregone income ($3,200 per child/year).13 In terms of policy and payment models, care must be taken to address what may be an unsustainable burden for families, and to consider paying families directly for the care they deliver.14 Such a direct family payment would almost assuredly yield substantial savings to our health care system.

Models of Complex Care Coordination

Complex care coordination programs can be classified into three distinct models: (1) primary care-centered programs, (2) consultative or co-management-centered programs, and (3) episode-based programs.15

Primary Care-Centered Programs

Deep relationships centered in the medical home facilitate communication during transitions of care and medical crises. In this model, providers cite inadequate time and reimbursement for excessive administrative paperwork, and inexperience with CMC and their diagnoses as barriers to deliver effective care coordination. Health information technology innovations, including decision support algorithms, point of care applications, and telehealth, have the potential to offset these challenges longer term.

Consultative or Co-Management-Centered Programs

Highly trained subspecialty teams based in regional centers help families and patients navigate care, especially when in the hospital. Advocates identify the positive support this offers families and community physicians, allowing patients to remain in their local medical homes and to access services closer to home. Although the grouping of patients builds a complex care team's skills and efficiency, enrollment criteria restrictions may limit access to certain patients or exclude others. Timely communication with community-based care that remains difficult to achieve may ultimately be rectified by interoperability of electronic medical records and advances in information technology. Resources will need to anticipate and manage high-risk episodes of care, including hospital or emergency department discharges and transitions of care.12,16,17

Episode-Based Programs

Episode-based programs provide around-the-clock medical management and care coordination during a discrete care episode. These costly regional programs tend to be based at medical centers. Examples of this model include transplant units and post-acute rehabilitation units. These teams focus on patient/family stabilization, optimizing transitions, and training families on how to provide the necessary care for their child going forward. Disease or condition-specific discharge protocols help facilitate transition to less-intensive care settings and to update the patients' medical home care team.

Care Coordination Toolkits

Effective care coordination presents challenges for both families and their child's care teams. Although new technology is emerging and supported by the Center for Medicaid Services (CMS) through its MyHealthEData initiative,18 data analytics and communication remains a labor-intensive task. Families and teams can be easily overwhelmed by tools intended to improve family engagement and enhance the quality of care coordination. Programs must care and measure; therefore, instruments should be chosen with an eye for balancing thoroughness with efficiency, as well as adding value to the patient/care team's effort and the health care system.19

In a more recent example, a new framework has been proposed by the Lucille Packard Foundation to ensure the quality of the shared plan of care concept described above.20

Payment Models and Sustainability: Lessons from the Coordinating All Resources Effectively Award

In 2014, the Center for Medicare and Medicaid Innovation (CMMI) funded the landmark 3-year national study, Coordinating All Resources Effectively (CARE) Award, which enrolled more than 8,000 children and their families across 10 children's hospitals and 42 primary care practice sites.21 This study demonstrated that alternative models of payment (summarized in Table 6) have the potential to significantly reduce total Medicaid costs.22–25

Payment Models

Table 6.

Payment Models

Program sustainability in this project and, as in a similar CMMI funded program in Wisconsin, was predicted by effective collaboration with state Medicaid managed care organizations.26–28

Innovation around alternative payment models must address the current raft of un-reimbursable tasks by members of complex care teams. A recent review of care coordination29 cited a quantitative study by Ronis et al.30 of non-reimbursable care coordination activities performed by a multidisciplinary team caring for 208 children in northeast Ohio. Unreimbursed services provided by a team led by a physician and nurse care coordinator included community health workers, behavioral health workers nutritionists, social workers, nutritionists, and data analysts cost without fringe benefits exceeded $2,000 per child per month. This was remarkably similar to the experience of the CARE program that staffed a 1.0 full-time equivalent care coordinator per 60 to 120 patients with a total team cost of $134 to $320 per member per month.31

Care of CMC During the Novel Coronavirus Pandemic

Given the complexity of each CMC's care network, these patients are more likely to experience disruption in services required to maximize their developmental potential and stay healthy. To mitigate this, the American Academy of Pediatrics Committee on Disabilities has released interim guidelines to assist clinicians in the care of children and youth with special health care needs.32 These guidelines reduce the infection risk through flexible accommodations and shared decision-making, and take a broad approach to engage families, medical and behavioral health providers, and other community, advocacy, and education-based care team members.

As the guidelines emphasize, measures to lower the risk of coronavirus 2019 and other infectious diseases in children with complex and chronic illness requires a multilayered approach (Figure 1). Combining best practices in hygiene and limiting contact creates a culture of safety and works synergistically to reduce transmission to CMC.

best approaches to prevention of and protection from the coronavirus 19 virus.

Figure 1.

best approaches to prevention of and protection from the coronavirus 19 virus.

Highlights of the messaging from the guidelines include the following:

  • Minimize exposure risk by avoiding the “3 C's”: Closed spaces, Crowded spaces, and Close contacts.
  • Use personal protective equipment (for everyone eligible/able age 2 years and older, use surgical masks, gloves, and, when indicated, N95 masks or powered air purifying respirator when a high risk of aerosolized particles is present such as with ventilators, suctioning, nasopharyngeal or pharyngeal swabs)
  • Community tracking as a mainstay of monitoring and management: test, trace, and isolate
  • Address structural inequities that increase infection risk
  • Optimize health insurance coverage

During the elevated risks associated with the pandemic, practices should create a flexible and responsive multidisciplinary model for children and youth with special health care needs (CYSHCN)/CMC in their community. Panel management may require review of highest-risk patients with appropriate prioritization, care coordination, and shared decision-making. We recommend a strategy to schedule communication between a CYSHCN's primary medical home, their specialists, and care team members, and pivot to telehealth when possible to minimize the number of in-person encounters.

Other approaches may include the following:

  • Partnering with local agencies to arrange home blood draws and joint home nursing visits with specialty and primary care providers or conduct team extender visits via telehealth/video platforms when possible.
  • Transportation risks can be minimized by limiting contacts to the extent possible (eg, using a single unit driver, family vehicle, and open windows during transport).
  • Use the plan of care as a shared tool to catalog ongoing issues and to schedule and track appointments across disciplines and services.

Although the pandemic has disrupted health care and fostered rapid cycle innovation in telehealth, it has shown this new mode of practice to be a safe and effective modality for care coordination and a way to reduce infection.33 The sustainability of tele-health has been bolstered by the robust engagement by both patients and clinicians, but will depend ultimately on its reimbursement.

Each encounter with a CMC must be considered an opportunity for communication, evaluation of the patient, and a negotiation with the family regarding the goals and next steps of treatment. The provider is continuously balancing risk with the family's health beliefs and treatment goals. Ideally, one must do an assessment that addresses and best integrates the health beliefs and concerns of the family members providing care. Applying a flexible approach tailored to the needs of each patient in the context of their family, culture, and community is essential for good health.


Care for CMC in this new era of rapid change will require a rethinking of historical paradigms. Although we all recognize the medical teams expertise in diagnosis and treatment, the expanding growth and diversity of CMC demands we integrate and define the roles of families, patients, community agencies, and payors. Whether a community, academic multi-clinic, or disease-based program, best practices for CMC deploy robust population health tools, data analytics, and communication among these stakeholders, establishing metrics of quality and cost, and acknowledging the importance of social determinants of health. These new populations of CMC will require new partnerships that can transform care, parlaying shared decision-making into shared plans of care that minimize risk and maximize care. Accelerated by the immense effect of the pandemic, evolving modalities show great promise in this arena, including mobile health, software powered by artificial intelligence, and telehealth as areas that will continue to drive innovations that improve of care coordination for CMC.

Lessons from existing and emerging programs offer evidence that community support can be leveraged to improve services and keep costs down. With adequately maintained staff, effective and sustainable care coordination for CMC can lower health care costs and improve the quality of life for patients while optimizing their families' well-being (Table 7).

Getting Started

Table 7.

Getting Started


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Available Algorithms for Identifying Children with Medical Complexity

Algorithm Description
Chronic Risk Groups (3M Health Systems) Severity of condition assigned by algorithm assessment of diagnosis, procedure codes, pharmacy, and functional status
Chronic Condition Indicator (Agency for Healthcare Research and Quality) Uses ICD-10-CM diagnosis codes classified as chronic or nonchronic; patients can be sorted by body systems affected by associated conditions34
Complex Chronic Conditions ICD-10 codes used to classify and categorize children with complex or chronic conditions35
The Pediatric Medical Complexity Algorithm Algorithms identify children with complex, chronic disease using Medicaid claims data36,37

International Classification of Functioning, Disability, and Health Framework of Care

ICF domain Examples of ICF domain Examples of additional areas of expertise required by a care team in ICF domain
Bodily functions and structure Neurology Physiatry/orthopedic Pulmonary/otolaryngology Gastroenterology Renal/urology Endocrine Hematology Skin Dental Pain Side effects of treatment Team management   Emotional/financial support of team members   Team meetings   On-call coverage   Creation of shared plans of care Care coordination   Primary care physician specialty communication   Inpatient/outpatient communication Technology   Indwelling devices   Tracheostomy/gastrostomy tube   Ventilator management   Pulmonary toilet   Ostomies   Dialysis   Ventriculoperitoneal shunt   Deep lines   Vagus nerve stimulation   Pacemakers Baclofen pumps Enteral supplies Diapers
Activities Mobility Transfers Communication Oromotor skills Feeding skills Self-care Vision Hearing Beds Lifts Chairs Walkers Standers Ramps Adaptive vehicles
Participation Social interactions School involvement Community involvement Anti-bullying School advocacy Individualized Educational Plan 504 plan Applied behavioral analysis services Medical legal partnerships
Environmental Equipment Augmentative Communication Access to community/family/friends Resources Health care team Family system supports Social determinates of health Goals of care Palliative care Respite care Long-term care Advocacy
Personal factors Demographic Coping style Insurance benefits Poverty Transitions Family systems Social determinates of health Family health insurance benefits Interagency communication Medical legal partnerships

The Core Team

Role Duties and responsibilities
Complex care pediatrician Ensures that treatment plans are in line with good medical practice and with the family's values and goals Liaises with primary care office and mediates disparate opinions between specialists and primary care provider Acts as a bridge for hospital to home transitions Assists with prior authorizations and service denials
Social worker Performs social assessments and links with state and local agencies Addresses educational and habilitative advocacy, and assists with school transitions and placement in specialized services Coordinates guardianship process and respite services Provides mental health support and brief crisis assessment and refers to appropriate services/intervention
Nurse care coordinator Creates and assures accuracy of care plan Ensures home services, medication, and equipment are in place Reviews notes, make team aware of necessary follow-up Attend hospital meetings/discharge meetings
Family navigator Addresses social determinates of health Addresses food, housing, and transportation needs Helps family complete applications with service agencies Accompanies family to school/agency/court-related meetings Helps family find resources for unmet needs

Components of Care Coordination

Component Description
Situational understanding A conceptual framework is built upon the family's and patient's identified goals, health care needs, and preferences
Care networking A health care team is formed around the patient. People are identified, roles and responsibilities are clarified, and a communication process is established
Planning A sound care plan is built upon health care needs and goals, resources are organized to safely address episodes of care, contingencies, and emergencies in a Shared Plan of Care
Tracking and monitoring The quality of services delivered and patient adherence to medical regimens need to be persistently tracked and monitored
Navigating the health care system Families require logistical support to receive comprehensive and continuous care as health status and needs fluctuate
Learning This is a bidirectional process that allows the health system to better understand what an individual patient needs to stay healthy and the patient's family learns how to best access needed services

Shared Plan of Care: Critical Core Elements


Condensed summary ('the two liner”)


Family goals for care


Problem list, allergies, medications from electronic medical record


Equipment and sizes if not in the medicine list


Key care team members contact information


Agencies' contact information


Action/”sick day” action plans (seizures, respiratory distress, dystonia, behavioral management)


Transition plans


Payment Models

Model Description Advantage Disadvantage
Fee for service Reimburses providers based on the number of visits and tests ordered Encourages delivery of care and effective use of patient visits Accountability for patient care may not be supported Coding guideline may have restraints
Pay for performance Rewards improvement based on predefined metrics Promotes timely, cost-effective care at reduced costs Administrative work may be time-consuming If programs have rigid measures, may incentivize providers to avoid high-risk, noncomplaint patients
Pay for care coordination Reimburses providers for specific care coordination services (ie, health care home model) Intends to reduce unnecessary, duplicated care and emergency department visits Promotes easy transitions between health care settings Health care delivery change may be time-consuming Reimbursable services need to be quantified
Bundled or episode payments Provides single payments for a group of services that may involve multiple providers in multiple settings Holds the group accountable for their performance, which may motivate providers to work together and avoid duplicated services Boundaries of an episode need to be defined If model is not widely accepted, there may be geographic limitations
Capitation Implements paying a single, fixed amount per patient per unit of time determined in advance for health care services Promotes greater potential for innovative delivery design Provides incentives to deliver efficient health care38 Possible incentive to avoid high-risk, noncompliant patients Possible limitations on providers and/or geographic preferences
Global payments Implements a fixed prepayment system made to a network of care providers per enrollee per unit of time Uses more sophisticated risk- adjustment methods compared to capitated models Ensures payments to cover all care for all conditions on behalf of a group of patients compared to capitated models Issues in defining types of care covered by global payment Connotes a stable patient population

Getting Started

Step 1. Identify CMC in your practice On average, each PCP caring for 2,000 children will have 4 or 5 CMC in their practice. Although many systematic survey tools exist, primary care offices can usually identify most CMC due to their known pattern of high use of medical care Step 2. Learn about your local resources Knowledge of local community and medical resources is essential. This will help you partner effectively with both regional medical center care coordination programs and with individual families Families also provide valuable input on the delivery of care to their children and help PCPs improve their knowledge of community resources and understand family concerns. Many complex care programs are well served by family advisory groups, giving parents a consistent voice regarding care Local agencies such as Early Intervention and State Departments of Public Health can typically foster contacts with helpful partners in a given region, such as family support groups, occupational therapy, physical therapy, speech therapy, palliative care, home nursing, DME suppliers, and accessible transportation and housing resources. A list of early intervention resources by state can be found here: <ext-link ext-link-type="uri" xlink:href="" xlink:type="simple" xmlns:xlink=""></ext-link> A list of Title V programs and contact information by state can be found here: <ext-link ext-link-type="uri" xlink:href="" xlink:type="simple" xmlns:xlink=""></ext-link>; Step 3. Assign a single person (with backup) to coordinate the care of CMC in your practice Keep your communication loops small. Assign a single contact person in your office who is in charge of keeping track of all of the referrals and forms required for this group of patients. This person can be the liaison to the larger medical centers and their complex care teams. Step 4. Learn how to care for common CMC issues Hands-on workshops are available to help providers feel more comfortable with this technology through the American Academy of Pediatrics, the Pediatric Academic Societies, and the American Academy of Cerebral Palsy and Developmental Medicine. Medical center complex care programs can also be a resource for hands on learning.

John Maypole, MD, is a Clinical Associate Professor of Pediatrics, Boston University School of Medicine. Tiffany Gavin, MBA, is the Director, Boston Allied Partners, Boston Medical Center. Mary Ann de Banate, MD, is an Assistant Professor of Pediatrics, University of Massachusetts Medical School Baystate. Matthew Sadof, MD, is an Associate Professor of Pediatrics, University of Massachusetts Medical School Baystate.

Address correspondence to John Maypole, MD, Department of Pediatrics, Boston University School of Medicine, 801 Harrison Avenue, Boston, MA 02118; email:

Grant: This project was made possible in part by a grant (1C1CMS331326-01) from the US Department of Health and Human Services, Centers for Medicare & Medicaid Services.

Disclaimer: The contents of this article are solely the responsibility of the authors and do not necessarily represent the official views of the US Department of Health and Human Services or any of its agencies.

Disclosure: The authors have no relevant financial relationships to disclose.


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