Issue Brief August 2018 A Better Way: Team Care for Children with Special Health Care Needs by Edward L. Schor, MD Abstract Chronic illness in children often is accompanied by psychological, social, and financial challenges for the child and family. Achieving optimal health care and quality of life therefore requires comprehensive, patient- and family- centered care, which necessarily involves close collaboration among a health care team and links to community resources. Creating an effective team requires changes in the structure and operation of pediatric practices, as well as restructuring of reimbursement systems to provide incentives and support for this model of care. As the prevalence of chronic illness increases, it will be worth the necessary investments to achieve desirable and obtainable outcomes. Introduction requires care models that emphasize not only The growing interest in the health care of accessibility, coordination and continuity, but children and adults with complex conditions, also the collaboration of a variety of types of paired with the trend toward larger practices and service providers. Such models work best when integrated health care systems, is causing payers they forgo a medical model and a disease to seek innovative was to increase efficiency orientation and evolve to an approach based on and effectiveness. It also has reawakened patient and family goals.3 interest in models of care, such as medical homes, that employ health care teams to provide The Chronic Care Model, introduced in 1998, and coordinate care. has been a touchstone for those designing health care systems for adults with chronic conditions. Children with chronic and complex health Among its key components is a prepared, conditions require a medical home staffed by a proactive practice team.4 Team-based care has team, just as chronically ill adults do.1 been promoted by health care improvement Chronic medical conditions and their experts,5 and, despite some discomfort with associated co-morbidities create disabilities and challenges to professional roles, questions of burdens – physical, psychological, social, and team leadership, organizational complexity, and financial – and require multi-disciplinary, scope of practice, has been encouraged by comprehensive services. professional associations.6, 7 It is clear that However, this requirement exposes the many providing high quality chronic care is well instances of fragmentation of services and gaps beyond the resources ordinarily available from a in care.2 Avoiding or addressing these pitfalls single health care provider.8 A Better Way: Team Care for Children with Special Health Care Needs www.lpfch.org/cshcn Adoption of a modified Chronic Care Model by Pediatric Chronic Care the World Health Organization broadened support for having a health care team as a core Those who care for children and youth with aspect of chronic care.9 A review of evidence on chronic or complex health conditions diabetic care by the Community Preventive understand it takes a village – a team – to meet Services Task Force10 found that those receiving these patients’ many needs. Recommendations team-based care had improved outcomes as for employing teams in pediatric care of measured by laboratory tests, reduced children with chronic conditions were made at hospitalizations and emergency department least several decades ago.12 Figure 1 diagrams visits, and had improved quality of life and the numerous potential services that families of better general physical and mental health. The children with special health care needs may impact of team care depends in part on its goals, draw upon and from which team members may whether they be improvements in access, quality be drawn. of care, patient or staff satisfaction, or cost, and The Chronic Care Model has been adapted by a the clinical environment into which it is number of investigators of pediatric chronic introduced.11 care, though its prominence as an approach to redesigning primary care has generally been superseded by the medical home model.13 Figure 1. Care Map of Services Used by CYSHCN A Better Way: Team Care for Children with Special Health Care Needs 2 Lucile Packard Foundation for Children’s Health The medical home, initially proposed by the coordinator to the practice; drawing on a shared American Academy of Pediatrics to meet the care coordination service within a hospital or needs of children with chronic health conditions large medical group; and relying on care and special health care needs, is intended to coordination services provided by managed provide care that is accessible, continuous, health care plans or public health agencies. In coordinated, comprehensive, compassionate, most of these cases practices are expanding their culturally competent and family-centered. It is resources by creating actual or virtual teams to unreasonable to expect an individual health care help with chronic care management. provider to offer care that meets all these criteria, so team care is clearly a prerequisite to Another concept contributing to the increased be a medical home for these children. adoption and utility of team-based care is that of working at the top of professional licenses and A federal definition emphasizes that team care abilities. In health care this generally means is requisite for medical homes: “Medical homes reviewing the processes involved in patient care are team-based models of patient care that rely and maximizing the contribution of each heavily on the primary care practice (provider participant in that process. In practice, everyone and care team) as the main and central source has the opportunity, and is expected, to for delivery and coordination of the majority of contribute to patients’ care to the full extent of health, illness, and wellness.”14 Notably, their education and training. Inherent in this providing team-based care is essential to receive approach is understanding one another’s medical home certification from the National capabilities, communicating among all Committee for Quality Assurance. participants, and purposefully organizing care processes so that patients benefit from the The component of medical home that has diverse skills that are available. received the most attention is the provision of care coordination. Parents of children with chronic and complex conditions rank care coordination at the top of their list of unmet Not a New Concept needs.15 Over 70 percent of pediatricians report Current support for team care reaches far that they serve as the primary coordinator of beyond a model for patients with chronic illness. medical care, but few coordinate with service George Halverson, former chairman and chief providers outside of the medical care system.16 executive officer of Kaiser Foundation As Figure 1 suggests, the need for coordination Hospitals and Kaiser Foundation Health Plan, of services is far broader than what is being Inc. is unequivocal in his advocacy for team- offered. Pediatricians report that lack of time based care, with which he equates medical and lack of office staff for non-face-to-face care home. “Vertically integrated teams of caregivers are the two main barriers to better care working together focused on patients is the coordination. The solutions being employed future of health care. It is the right model and include designating an existing office staff where health care needs to go. You have better member to take additional responsibility for care care when you have fully informed caregivers, coordination; adding a designated care working as a team with other caregivers.” 3 A Better Way: Team Care for Children with Special Health Care Needs 3 www.lpfch.org/cshcn Yet team care is not a new concept, though its help patients access care, such as transportation, philosophy, structure, composition, and translation, and case management. operation have evolved and continue to do so. Neighborhood health centers now number over Team care was practiced in mission hospitals in 1,100 across the country and are a signature India and in health centers in London early in program of the federal Health Resources and the 20th century. In the US, the military used Services Administration of the Department of teams to care for the wounded during World Health and Human Services. War II. In the mid-1960s, a shortage of primary care physicians and the emergence of nurse In recent years, team care has gained practitioners and physician assistants presented momentum, supported by aspects of the Patient the occasion, and helped strengthen the Protection and Affordable Care Act of 2010, argument, for the introduction of a team and by developments and positions taken by approach to health care. organizations such as the American Academy of Pediatrics, American College of Physicians, In 1964, the Economic Opportunity Act, as part Patient-Centered Primary Care Collaborative of the War on Poverty, provided local and the Interprofessional Education community support for a variety of activities to Collaborative.17, 18 There are numerous barriers establish better economic climates; it required to providing interdisciplinary team care, yet the maximum feasible participation by community benefits seem to justify efforts to overcome members. One form of local activity was the them. Although each study of team care has creation of neighborhood health centers, the first been unique to its setting, team leadership and of which were established in Boston and composition, and the patients who are served, in Mississippi in 1965-66. One of the founders of general team delivery of comprehensive care these clinics, Jack Geiger, was at that time also has resulted in more appropriate utilization and advocating for the creation of a health adherence, reduced hospitalizations, and other profession career ladder by which community efficiencies, and has improved patient functional members could begin with entry-level health status and satisfaction with care.19, 20, 21, 22 jobs, e.g., hospital orderly, and through experience and education become health Planning for Change professionals. Such experience would no doubt enhance team functioning. In light of these existing models and imminent changes in medical practice, it is time to pursue By the nature of their mission and mandate for policies to ensure that children with special community leadership and participation, health care needs and their families benefit from neighborhood health centers were fertile ground team-based care. Team formation, practice for team-based care. They were expected not redesign, and value-based reimbursement for only to provide efficient and comprehensive chronic care would be valuable steps. primary health care, but also to provide it in a linguistically and culturally appropriate manner, Creating the Right Team tailored to fit the special needs and priorities of Determining the composition of health care their communities. This included services to teams is a first challenge. Teams need to be A Better Way: Team Care for Children with Special Health Care Needs 4 Lucile Packard Foundation for Children’s Health individually comprised to meet the needs of team “huddles” or weekly team meetings or each patient, and since the patient and their calling on the family for their preferred team caregiver(s) are essential team members, even structure. There also may be other community- when they share the same health care providers. based service providers who, though distant Since the goal of team care is to meet the from the core health care team, are regularly patient’s needs, the functions, size and involved with the patient and the family and composition of teams will vary according to who need to be apprised occasionally of those needs. To some extent, team changes in the child’s status or service needs, characteristics and membership can be e.g., school personnel. anticipated when patients are tiered according to Redesign Practices to Incorporate their levels of medical and social complexity. Multidisciplinary Teams Large teams are at best cumbersome and at worst are dysfunctional as they can and fail to A work group at the Institute of Medicine effectively communicate and coordinate care; so developed a set of principles for team-based smaller teams generally are better. care, generally within practice settings. These include having clear roles, mutual trust, Determining team leadership is important and effective communication, shared goals, and may change depending on the child’s health measurable processes and outcomes.23 To status and chronic. For the ongoing care of a achieve such an environment practice will often child in stable health, a primary care provider require “…profound changes in the culture and may best serve as the principal team leader. organization of care, in the nature of interactions However, for acute or discrete issues the among colleagues and with patients, in principal lead may shift temporarily to someone education and training, and in the ways in which else, e.g., a subspecialist, a social worker, or a primary care personnel and patients understand mental health professional. Adapting team care their roles and responsibilities.”24 Some studies to incorporate such problem-focused teams has have examined the processes of introducing the advantage of simplicity over perhaps larger team-based care into practices.18, 25, 26 Practices and pre-determined team membership. may have to expand existing roles and add new Core teams whose members are regularly and staff and new competencies.27 There remains intimately involved in shared decision-making great promise in the use of information with the family will sometimes need the advice technology to facilitate communication among of others with additional, specific expertise. health care team members. The complexity of These advisors need to have established shared communication expands with the size of relationships with the core team and usually the health care team and when electronic health with the patient and should have ready access to record systems are not compatible among the patient’s health records and care plan. service providers. Even when health information Sometimes these advisors may temporarily technology is working as desired, it does not serve as the principal team leader. There is a ensure that the various health care providers need to develop practical models of assessing involved in the care of a child act in concert or and possibly shifting leadership, such as using 5 A Better Way: Team Care for Children with Special Health Care Needs 5 www.lpfch.org/cshcn proactively promote the child’s future health services and the importance of coordinating and well-being. care, this new benefit remains a fee-for-service payment and thus can reinforce Consequently, practice transformation can be fragmented care. difficult and somewhat time consuming; to be successful requires an already strong practice Team-care for chronic and complex conditions with clear leadership and a vision of what is to is not well supported by fee-for-service and be achieved.28 Still, modest adoption of team other productivity-based compensation – quite care that relies on small core teams who work the contrary. Such financing models have been intimately with one another can achieve barriers to comprehensive, coordinated, improved quality and efficiency. interdisciplinary care. Typically, being paid piecemeal requires extensive documentation of Fund Chronic Care to Support individual services, and some payers still retain Team-Based Care the antiquated rule denying payment for more In addition to requiring changes in the structure than one encounter within the same day. Fee- and operation of practices, team-based chronic for-service has been used effectively in some care will require restructuring reimbursement settings to pay for key coordination services systems to provide incentives and support for based on a determination of the time and level this model of care. Payment must be designed to of professional required and a fee agreed upon. cover the mix of services that optimize Various types of bundled payments, such as outcomes, including addressing personal and “episodes of care” or “care cycle” are hampered social factors that have consequences on health by the difficulty of defining chronic care care access, use, and adherence to agreed-upon management. Some health plans receive annual care and management. The focus must be on capitation for patients with chronic illnesses, increasing value for patients. Value-based care and the episode of care is considered to be one defines value in terms of the “health outcomes year. Capitated payment – a single payment to achieved per dollar spent.”29 cover all of a patient’s service needs during a One change in reimbursement occurred in 2017 specific time period – requires some kind of risk when Medicare began offering payment for adjustment or tiering to work for a population, chronic care management services. These otherwise providers may try to avoid patients consisted of establishing, implementing, with multiple, time-consuming, or expensive-to- revising, and monitoring comprehensive care treat conditions.31 “When capitation is risk- plans for patients with multiple chronic adjusted, providers get paid more for taking care conditions. These activities are expected to of sicker patients but not for providing more occur in practices that offer 24/7 access to services to the same patients.”28 physicians or clinical staff, continuity of care, One approach to value-based care involves enhanced communication opportunities, rewarding health care providers for the quality comprehensive care management, and of care they provide by tying a portion of their transitional care management.30 While it is a payment to their performance on quality welcome recognition of the need for these measures.32 New health care delivery models A Better Way: Team Care for Children with Special Health Care Needs 6 Lucile Packard Foundation for Children’s Health such as accountable care organizations and Team care provides additional challenges to patient- and family-centered medical homes determining appropriate reimbursement and encourage integration and coordination and are reimbursement methods. Within a single situated to use and benefit from value-based practice the relative value of each team reimbursement. Such reimbursement is member’s contribution may be difficult to predicated upon agreement on the end goals of compute and is often avoided or ignored. care and related measures. There is growing However, should payers determine that services acceptance that those goals should be provided by non-health care providers have determined in partnership with the patient and value for the health of patients, their family. Such patient/family-centered care is responsibility for paying for those services is likely to include attention to services beyond not clear. If they choose to reimburse for those typically offered by medical practices. community-based support services, it is not obvious whether these funds should be in Chronic illness management is frequently addition to or in place of payment to the hampered by the patients’ personal and social capitated health care providers. circumstances. Failure to address these needs may result in a delivery system biased toward more expensive medical care episodes.33 Conclusion Children and youth with chronic conditions and complex needs require long-term supports from Chronic illness is often accompanied by a variety of professionals whose financial psychological, social, and financial challenges support comes from outside the health care that unaddressed can impede effective medical systems. There is a pressing need to reconcile care. Achieving optimal health-related quality of financial responsibility for remediating social life then requires comprehensive, patient- and factors with health consequences. family-centered care based on their needs and goals. Such care necessarily involves close Beyond disease-specific clinical measures there collaboration among the health care team is little agreement on the outcomes to which members and established linkages with a variety reimbursement should be tied. There is no of community service providers. Although consensus on appropriate quality measures for health care teams have a long history, the care of a child with multiple chronic particularly in community clinics, broad conditions, nor is there an agreed-upon set of adoption of this model of care is hampered by population measures for children with special the need to redesign not only individual medical health care needs. “New measures of quality practices, but also by the need to transform are needed that encourage coordination and health care systems and processes of the integration of health services across the reimbursement so they are supportive of cycle of care, creating incentives for team-based care. As the prevalence of chronic providers to share responsibility for each illness increases, it will be worth the patient’s health problem.”34 necessary investments to achieve desirable and obtainable outcomes. 7 A Better Way: Team Care for Children with Special Health Care Needs 7 References 1. Wagner EH. 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Department of Health and Human Services, Centers for Medicare & Medicaid Services 42 CFR Parts 422 and 480 [CMS–3239–F] RIN 0938–AQ55 Medicare Program; Hospital Inpatient Value-Based Purchasing Program, Final Rule. 26490 Federal Register / Vol. 76, No. 88 / Friday, May 6, 2011 / Rules and Regulations 33. Daschle T, Frist B. For patients with multiple chronic conditions, improving care will be a bipartisan effort. Health Affairs Blog. June 1, 2017. 10.1377/hblog20170601.060354 34. Elf M, Flink M, Nilsson M, Tistad M, von Koch L, Ytterberg C. The case of value-based healthcare for people living with complex long-term conditions. BioMed Central Health Services Research, 2017; 17:24 DOI 10.1186/s12913-016-1957-6 ABOUT THE FOUNDATION: The Lucile Packard Foundation for Children's Health is a public charity, founded in 1997. Its mission is to elevate the priority of children's health, and to increase the quality and accessibility of children's health care through leadership and direct investment. Through its Program for Children with Special Health Care Needs, the foundation supports development of a high-quality health care system that results in better health outcomes for children and enhanced quality of life for families. The Foundation encourages dissemination of its publications. A complete list of publications is available at http://www.lpfch.org/publications CONTACT: The Lucile Packard Foundation for Children’s Health, 400 Hamilton Avenue, Suite 340, Palo Alto, CA 94301 cshcn@lpfch.org (650) 497-8365 A Better Way: Team Care for Children with Special Health Care Needs 10