When attempting to best serve individuals and families with disabilities, data shows that the Medical Home model leads to the most optimal outcomes for children with disabilities and their families. Additionally, the use of a medical home in a patient's care "improves health outcomes, enhances the patient and provider experience of care, and reduces expensive, unnecessary hospital and emergency department utilization" (Nielson, et. all, 2012, p.2). As a component of the Medical Home model, it is especially necessary to consider the impact of care coordination - an attempt by medical and care professionals to deliver seamless care and guidance to families across health providers and communities, on their care and well-being. Care coordination, however, lacks a consistent and reliable definition to guide what this care means. Roles, duties, qualifications, and many other areas of organization are also unclear. A literature review conducted by the National Academy for State Health Policy (NASHP) to inform its 2020 Care Coordination Report "identified more than a dozen definitions of care coordination" (NASHP, 2020, p. 5), and polling of Nebraska based organizations revealed the same. This lack of consensus leads to misinformation and confusion on the parts of both families and professionals. To equitably deliver this care it is necessary to form a universal, national definition of care coordination and define specifics of best practice, which can alleviate this confusion and lead to better care. In doing so, those at the state level will be able to offer a more guided care coordination effort.

A comparison of documents outlining care coordination reveals a few core areas of alignment. Many definitions show a commitment to working "across all elements of the complex health care system [...] and the patient's community [...]" (Association of Maternal and Child Health Programs [AMCHP], 2017, p. 17), reducing "caregiver and patient burden" (NASHP, 2020, p. 4), and providing "better care, better health, and lower costs" (American Academy of Pediatrics [AAP] - e1452).  These documents show that care coordination is family- and patient-centered and that it crosses systems and networks to bring the best care to the individual. Care coordination assures "that patients get the indicated care when and where they need and want it" (AMCHP, 2017, p. 17), placing the individual and their family at the center of the process. The 2020 NASHP report defines care coordination as "patient- and family-centered, assessment-driven, team-based activities designed to meet the needs of children and youth. Care coordination addresses interrelated medical, social, developmental, behavioral, educational and financial needs to achieve optimal health and wellness outcomes, and efficient delivery of health-related services and resources within and across systems." (NASHP, 2020, p. 5). This definition highlights and unites elements of care coordination definitions across networks and lays a framework for a standard definition in the future.

To best understand care coordination, it is equally important to understand the elements of best practice necessary for effective care coordination. These elements clarify the above definitions and work as a guide to implementing care coordination. Key elements that were repeatedly highlighted across network definitions include, patient- and family-centered, cost-effective, interdisciplinary and holistic, community-based, and communicative care.

Given this, care coordination is a tool that is best used to help guide patients and their families through the complicated systems of health care and service supports and therefore requires a patient-centered model. Families and patients should be involved in all aspects and at all stages of the coordination process and their "family beliefs, preferences, expressed needs, and goals for care coordination" (NASHP, 2020, p. 12) should be central to what a care coordinator does.  In addition, care coordination requires cultural sensitivity; to be patient-centered providers must be conscious and respectful of their patient's cultural background and needs. The two processes go hand in hand. Proper care coordination is "culturally and linguistically appropriate" (AMCHP, 2017, p. 17) and "match the health literacy level, primary language, and culture" (AMCHP, 2017, p. 10) of those being served. With patients and their culture in mind, a care coordinator can help facilitate appropriate care and best outcomes.

Effective care coordination is also linked to the Social Determinants of Health (SDOH). This means that care coordination must account for and address the socio-economic conditions of patient's lives, their community supports, as well as other factors of life. Simply put, care coordinators "must first help patients address their most basic needs" (Freed, 2020), before attending to their medical care. If the Social Determinants of Health are not properly addressed patients may experience "higher rates of ER visits, hospital readmissions, more chronic diseases requiring ongoing care, and limited access to follow-up care" (Freed, 2020).  Outcomes for patients are better when the stressors and worries of their lives, outside of the purely medical, are addressed and when they have "an ongoing and consistent support network to navigate social and health needs" (Freed, 2020). This requires a care coordinator to work not just within the realm of a clinic or medical institution, but also in the community in which a patient lives. Care coordination should be holistic and serve the patient as a whole, and not just one of its parts.

Care coordination is also an interdisciplinary effort that involves all those who impact the health and care of a patient, including specialists, general practice doctors, therapists, community service providers, and Medicaid or other insurance providers. This requires that the team have open lines of communication and a collaborative plan that is centered on the patient's needs.  Communication within the team prevents siloed care, which "can lead to duplication of services, weaken accountability systems, and burden families with the task of coordinating the coordinators" (NASHP, 2020, p. 7) Care coordinators can employ a Joint, or Shared, Plan of Care, which is a document that contains health history and information, goals and outcomes, and plans for continuing care, to organize a patient's care. This document is fluid and is shared across systems to all members of the care team, particularly the family and individual, who occupy a "central role in [the plan's] dynamic development" (AMCHP, 2017, p.21). It serves as a means of communication amongst the team and as a way to keep all members of the medical home up to date on a patient's care and goals. Care coordinators can also employ care mapping, which is a tool used to illustrate the myriad of connecting points between the patient and family and the systems that serve them. This looks like a web connecting areas of healthcare, education, services, and personal life to the central person or patient. According to Boston Children's Hospital, the process of care mapping "highlights a family's strengths and communicates both the big picture and the small details of all of the resources needed to support a child and their family" (Antonelli & Lind, 2020). It also shows all the elements of care that a family or caregiver must balance. A care coordinator's role is to navigate these connecting points so that a parent or caregiver isn't alone in this role and so they don't have to balance it all without guidance.

In order to define what care coordination is it is also important to make the distinction of what care coordination is not. Care coordination is different from case management. A case manager works with "services intrinsic to their specific agency, often within the constraints of eligibility criteria" (AAP, 2014, p. e1452) and in a clinical capacity. Care coordination is also not service coordination.  In the state of Nebraska, service coordinators work to help navigate state and home and community-based services for an individual or their family. These roles, while they may share similarities, differ from care coordination. Care coordinators are intended to work "across people, functions, and sites" (Johnson et. all, p. 95) and with community resources. They "work with and guide the team process, which includes and is driven by the needs of patients and families for services across the community" (AAP, 2014, p. e1452). A care coordinator may be the person who communicates with a case manager or service coordinator to bring the needs of those positions to the overall plan of care and to the family-driven team. Some duties may overlap or align, but again, the core impact and intention of these positions differ.

Examining national definitions and standards of care coordination is enlightening in that it reveals the standards to which medical practices should aim for. It also can outline important information that can qualify and define care coordination for those working at a state level. In Nebraska, a 2020 survey was developed by members of the Family-Care Enhancement Project, based at the Munroe Meyer Institute in Omaha, Nebraska, and in conjunction with the state Title V office. This survey served as a tool to make clear the lack of consensus within the state regarding the issue of care coordination, learn about commonly held definitions, and see what current practice looked like in the state. This survey revealed, in line with national evaluations, that ideas surrounding care coordination and its definition, practice, and employment, differed across the board, and were often broad and unspecific. The respondents came from varied backgrounds, with differing experience and training, and even with different job titles. While some organizations reported having structured teams and processes, others had a more reactive approach, without a formalized system. Additionally, some respondents felt that they weren't responsible for care coordination at all.

The survey, which was disseminated to key individuals across the state who worked in agency, clinic, health care system, or family support program settings, consisted of both multiple choice and short answer questions. When asked to define care coordination some respondents claimed that "we don't have a definition that is consistent across systems, which is one of our biggest problems" (Swanson, et. all, 2021, p.35), or that "there is not a clear care coordination team" (Swanson, et. all, 2021, p. 36). It was also noted that at times, care coordination was also classified as a "wraparound approach" (Swanson, et. all, p. 35). It was clear that those in care coordination positions connected families to resources, acted as navigators, and supported families.

Current attempts are being made within Nebraska to improve care coordination standards. The Title V office within the Department of Health and Human Services has established the Nebraska Partnership for Mental Healthcare Access in Pediatrics (NEP-MAP), whose goal is to increase access and quality of mental and behavioral healthcare for children and youth with special healthcare needs in Nebraska. A component of this work has been devoted to creating training modules for care coordinator positions and examine the current definition and status of care coordination in the state. Other attempts are being made to incorporate Community Health Workers (CHW) into the business of care coordination. The Munroe Meyer Institute is also creating a new Care Coordination program to serve the needs of patients and their families. Collectively, an attempt to reduce siloing and redundancies of care within care coordination would move Nebraska towards best practice. Additionally, survey respondents demonstrated a desire for greater accessibility, in the form of transportation or access to technology, as well as a desire for greater responsibility and clarity among state Managed Care Organizations (Swanson, et. all, p. 47). These opinions present further areas for consideration.

Overall, positive steps are being taken both nationally and at the state level to define and streamline care coordination. This process is vital for individuals with disabilities and their families, because of the high volume of needs -- medical, social, and personal -- that an individual has. With all the various connections to different specialists, care teams, and state supports that families must navigate, it is important to provide someone whose role allows them to provide necessary resources, advocate and organize their care, and communicate with systems and networks that can be confusing. By aligning definitions and identifying best practices, practitioners will be better able to provide this care in an appropriate and satisfactory manner.

References:

American Academy of Pediatrics, Council on Children with Disabilities and Medical Home Implementation Project Advisory Committee. (2014). Patient‐ and family‐centered care coordination: A framework for integrating care for children and youth across multiple systems. Pediatrics, 133(5), e1451.   https://pediatrics.aappublications.org/content/pediatrics/133/5/e1451.full.pdf

Antonelli R. & Lind C. (2020, December). Care Mapping: An Innovative Tool and Process to Support Family-Centered, Comprehensive Care Coordination. Boston Children's Hospital. https://www.childrenshospital.org/integrated-care-program/care-mapping

Association of Maternal and Child Health Programs, National Academy of State Health Policy, and the Lucille Packard Foundation for Children's Health. (2017, June). Standards for Systems of Care for Children with Special Health Care Needs Version 2.0. http://www.amchp.org/programsandtopics/CYSHCN/Documents/Standards%20for%20Systems%20of%20Care%20for%20Children%20and%20Youth%20with%20Special%20Health%20Care%20Needs%20Version%202.0.pdf

Freed, A. (2020, May). Applying Social Determinants of Health to Improve Care Coordination. Healthcare IT Consultant.  https://hitconsultant.net/2020/05/26/applying-social-determinants-of-health-to-improve-care-coordination/#.YDlkx2hKjIU

Johnson, B., Abraham, M., Conway, Simmons, L., Edgman-Levitan, S., Sodomka, P., Schlucter, J., Ford, D. (2008, April). Partnering with Patients and Families to Design a Patient- and FamilyCentered Health Care System. Institute for Patient- and Family-Centered Care. https://www.ipfcc.org/resources/PartneringwithPatientsandFamilies.pdf

National Academy for State Health Policy. (2020, October). National Care Coordination Standards for Children and Youth with Special Health Care Needs. https://www.nashp.org/wp-content/uploads/2020/10/care-coordination-report-v5.pdf

Neilson, M., Langner, B., Zema, C., Hacker, T., Grundy, P. (2012) Benefits of Implementing the Primary Care Patient-Centered Medical Home: A Review of Cost and Quality Results, 2012.  Patient-Centered Primary Care Collaborative. https://www.pcpcc.org/sites/default/files/media/benefits_of_implementing_the_primary_care_pcmh.pdf

Swanson, S., Shriver, M., Skoglund, B., Costello, E. (2021). Report and Proposal for Training and Integration of Parent Resource Coordinators in Primary Care-Behavior Health Integrated Clinics in Nebraska. Munroe Meyer Institute, University of Nebraska Medical Center.  Contact Emily Costello at [email protected] for more information.