Approximately 10.2 million children, or 14% of all children in the United States, have special health care needs according to the Department of Health and Human Services, Maternal and Child Health Bureau (MCHB).1 The MCHB defines children with special health care needs (CSHCN) as those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services of a type or amount beyond what children generally require.2 The medical costs of people with chronic diseases account for more than 75% of the United States' medical care costs,3 and although only 14% of children have special health care needs, they account for nearly half of pediatric health expenses.4
Over the past 30 years, health care for CSHCN has gradually shifted from a biomedical model with services provided in the hospital setting to a more decentralized community-based model.5 This shift has expanded the focus from traditional medical needs to include community systems that address the medical, educational, social, and emotional needs of children with disabilities and their families. The focus on community-based services has allowed many families to travel shorter distances for services and to receive more services in their own communities.
The negative aspect of this decentralization of health care is that coordinating care among the many providers who serve CSHCN is difficult. A survey of more than 2000 families of CSHCN6 found that 39% of the children received services from 3 or more public agencies in addition to their health plans and that 76% received specialized health services at school. Coordination among the various providers and agencies is often fragmented or lacking, and a universal electronic health record or other consistent means for providers and agencies to communicate does not currently exist. Providers typically are not linked organizationally and often do not have time to communicate with one another.7 In our experience, the lack of communication can sometimes be so pervasive that a school therapist might not know who a child's orthopedist is and a physician might not know a child is receiving physical therapy at school.
Health insurance reimbursement systems that use a fee-for-service or managed care system also can contribute to lack of communication if they do not adequately reimburse for care coordination and communication with other professionals. One study found that 75% of the pediatricians surveyed believed that reimbursement negatively affected their ability to provide quality care for CSHCN.8
When professionals do not coordinate care, the burden of care coordination and facilitating communication among providers often falls on families. Families frequently have to navigate between different systems of care including primary medical, specialty medical, educational, and other community services. These systems often have different eligibility and payment requirements and differing models or philosophies of care, such as those used in medical, educational, and social systems, which also can create difficulties for families.9
When families and providers are unable to effectively coordinate care for CSHCN, gaps in services can occur. Studies have shown, for example, that 15% to 25% of children have an unmet need for therapy services.10 In addition to therapy services, supportive services such as procurement of specialized equipment, accessible transportation, respite care, and home health services help families care for CSHCN with functional limitations. Benedict11 found that 11% of CSHCN have an unmet need for supportive services, many of which are not covered by most health insurance plans. Another problem is that CSHCN often are at increased risk for secondary complications such as weight gain, pressure ulcers, and joint contractures. In many cases, these secondary conditions are preventable, but prevention requires monitoring, patient education, and follow-up from health-care providers. These critical components of health care are too often lacking in the current fragmented model. Sometimes a secondary condition or health care crisis can lead to hospitalization that might have been avoided if care coordination, monitoring, and patient follow-up had been available.7 National research shows that 11.5% of all hospitalizations were for potentially avoidable conditions.12
A better model for health care for CSHCN is needed to address the fragmentation. Increasingly, the health care community has recognized care coordination as a potential way to provide improved care for CSHCN.13 The purpose of this article is to summarize the research on the possible benefits of care coordination for CSHCN and explore potential roles for physical therapists in care coordination, including roles as primary care coordinators, members of interprofessional teams, advocates, and researchers.
For this article, we searched the MEDLINE and Allied Health and Complementary Medicine databases and the Cochrane Database of Systematic Reviews. Search terms included the key words care coordination and medical home separately and paired with key words children with special health care needs and medical subject heading (MeSH) terms child, disabled children, pediatrics, and physical therapy. We also used the reference lists of articles we found to identify other articles. We did not systematically review or rate the articles because our purpose was not to examine and analyze research on the effects of care coordination but to provide an overview of care coordination and envision potential roles for physical therapists working with CSHCN in various settings.
Although several definitions and models exist, the American Academy of Pediatrics (AAP) provided a useful and widely accepted definition of care coordination as “a process that links children with special health care needs and their families to services and resources in a coordinated effort to maximize the potential of the children and provide them with optimal health care.”14(p978) Care for CSHCN must be coordinated across a broad range of medical, social, and educational services to help families better access and negotiate complex delivery systems, break down barriers between systems of care, arrange and schedule services, facilitate communication among multiple providers, and monitor changes.14
The most common model of care coordination is the medical home model. The medical home is not a physical place, but rather a framework for providing services to coordinate care for patients. In a 2002 policy statement, the AAP described the medical home model as a way to provide “accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective care.”15(p184)
The medical home model traditionally has centered around the primary care physician as the primary “home” or person who coordinates care.15 Other models, however, have nurse practitioners as the primary care coordinator16,17 and potential care coordination roles for physical therapists also exist. The Agency for Health Research and Quality, for example, described a patient-centered medical home in which the coordinator role is filled by the most appropriate provider within each patient's care team.18 This is consistent with 1 of the American Physical Therapy Association's public policy objectives for 2011–2012, which is “to ensure that all models of care delivery, such as medical homes and accountable care organizations (ACOs), enhance patient access to rehabilitation services and preserve patient choice.” The accompanying strategy is “to advocate for the role(s) of physical therapists (eg, clinicians, care management) in integrated delivery systems, such as ACOs and medical homes.”19
Benefits of Care Coordination
The projected benefits of care coordination fall into 4 main categories. These include patient/family satisfaction, staff satisfaction, and improved systems and health outcomes.20
Overall, research has de-monstrated improvements in patient and family satisfaction after implementation of care coordination.17,21,22 The greatest improvements in satisfaction were seen for families whose children had the most severe limitations, with less effect for families of children with potentially less complex conditions such as asthma.17,21 Specifically, patients and families reported increased involvement in care (ie, feeling actively involved in care, working with providers to set goals, making and using written care plans), improved access to providers, an increased sense of partnership with professionals, and decreased worry and frustration.12,22
Staff satisfaction has not been a primary focus of care coordination research, but a few investigators have demonstrated increased staff satisfaction.23,24 A pilot study of the medical home model by the Group Health Cooperative, for example, found that 10% of staff working within the medical home model reported high emotional exhaustion at 12 months compared to 30% of staff working within a traditional health care model.22 Interestingly, a few researchers from the early 1970s showed similar improvements in physician and staff satisfaction when focus was placed on continuity of care.25
Systems and Health Outcomes
Much of the research on care coordination has centered on the system outcome of decreasing costs by decreasing expensive care, such as emergency department visits and hospitalizations. Investigators have found, for example, that medical homes are less likely to hospitalize children with chronic conditions and that care coordination reduces both hospitalizations and emergency department visits.21 A study that looked at the effect of access to a consistent primary care physician within a health maintenance organization had similar findings,26 and authors of a literature review27 also identified evidence to support continuous relationships with a physician. They concluded that patients cared for within a medical home were more likely to be up to date on screening, immunizations, and health habit counseling and were less likely to use emergency rooms than patients without a medical home. Although specific health outcomes have not been the focus of much of the research, a review of research on medical homes for CSHCN concluded that when compared with services not provided in a medical home, children had better health status and services were more timely.13 Overall, a report for the National Academy for State Health Policy16 concluded that when successfully implemented, care coordination may significantly increase the quality of care and reduce costs for people with chronic conditions.
Although the literature supports care coordination, including the medical home model, a need still exists for more large-scale, longitudinal randomized controlled trials.13 New research should focus on effects of care coordination beyond decreased emergency room visits and hospitalizations. Studies could use the International Classification of Functioning, Disability and Health model to measure improvements in activity and participation as well as in body structures and functions of CSHCN.28 Within this framework, researchers could study effects of coordinated care on such diverse variables as development of contractures and scoliosis, obesity, development of motor skills, self-care, use of assistive technology, inclusion in general education classrooms, and employment after high school graduation. Examination of the effects of care coordination on parent variables, such as stress and anxiety, time available for other activities, and overall quality of life also would be useful.
Roles for Physical Therapists in Care Coordination
The AAP summarized care coordination in the following way:
Care coordination occurs when care plans are implemented by a variety of service providers and programs in an organized fashion. It involves needs identification, assessment, prioritizing, and monitoring. A coordinator is required to communicate, network, and educate as well as advocate for resources.29(p3)
The role of physical therapists in care coordination will vary with the team and the setting, but care coordination or aspects of care coordination usually are appropriate, and coordination is described as an intervention in the Guide to Physical Therapist Practice.30 Under the coordination role, the guide specifically mentions such interventions as case management, admission and discharge planning, collaboration and coordination with agencies, communication across settings, cost-effective resource utilization, referrals to other professionals or resources, interdisciplinary teamwork, and data collection.30
Primary Care Coordinator
One potential role for physical therapists is to take the lead in care coordination or assume certain parts of the care coordinator's role when they are the primary, most frequent service provider for CSHCN. McAllister et al20 identified qualifications and responsibilities for care coordinators, most, if not all, of which pediatric physical therapists could fulfill. Qualifications outlined in the article include holding a Bachelor's degree, having experience working in community-based pediatric care, and having leadership and advocacy skills. Responsibilities include providing family-centered services, seeking out and connecting families to community resources, building relationships with families and professionals, developing a care plan for families, and facilitating teamwork between all professionals involved in the child's care. In many states, patients have direct access to physical therapy and a physical therapist could assume the role of the medical home model provider by recognizing when patients need other medical or social support services, helping to connect patients to those services, and reducing barriers to needed services. For therapists working in outpatient settings, this might involve scheduling annual or biannual well visits if the child is only seen for discrete episodes of physical therapy care.
Part C of the Individuals with Disabilities Education Act (IDEA) provides another potential opportunity for physical therapists to serve in a service coordinator role. IDEA requires individualized family service plans to identify a service coordinator “from the profession most immediately relevant to the infant's or toddler's or family's needs” (Sec. 636[d])31 or who is otherwise qualified. In our experience, physical therapists working in early intervention often are the primary, most frequent provider for the children and families that they serve, so service coordination would be a logical role for them. The responsibilities of service coordinators and their activities under IDEA are included in Table 1.
Although IDEA requires service coordination, it allows states to develop their own approaches. In states that use a primary service provider model,34 all of the primary service providers, including physical therapists, might coordinate services for the families they serve. Other states assign “dedicated” service coordinators, whose only role is service coordination.35
Care Coordination Team Member
Another potential role for physical therapists is as a member of an interprofessional team within a physician-centered medical home model. Physical therapists have the knowledge to help children move and play, prevent secondary conditions, and promote wellness, fitness, and quality of life.36 As part of an outpatient medical home team coordinating care for children with obesity, for example, physical therapists could tailor appropriate aerobic and resistive exercise programs for children to promote improved cardiovascular endurance, increased strength, and weight loss while taking into consideration any secondary conditions that commonly affect exercise in this population (eg, joint pain, decreased heart function, or diabetic neuropathy).
In an ideal medical home model, physical therapists, either hospital-based or community-based, would consult frequently with the children's medical team providers, including nutritionists, psychologists, and physicians to stay informed about their diet, social and psychosocial status, medications, and secondary conditions and help coordinate appropriate interventions, patient education, and other supports as necessary. This model is already being implemented at some hospitals around the nation, including the Optimal Weight for Life (OWL) program at Children's Hospital Boston. The OWL program is an interprofessional care clinic that evaluates and treats children who are overweight/obese and/or children with type II diabetes. The team includes physicians, nurse practitioners, dietitians, psychologists, social workers, and physical therapists.37 Expanding that model to include the child's educational and community-based care providers would result in even greater care coordination.
In a hospital inpatient setting, a pediatric physical therapist also could provide care coordination. For a child recovering from a traumatic brain injury, who is about to be discharged, for example, the therapist could contact the child's school district to discuss discharge plans. In a survey of parents of CSHCN receiving care in a hospital setting, the parents were most critical of the inadequate communication between health care providers and their children's schools.38 A phone call or e-mail to the school-based therapists to discuss seating and mobility needs or current status with transfers or ambulation could give the school-based therapist the chance to get necessary equipment and train staff ahead of time to help ease the transition back to school for the child and school personnel.
School-based physical therapists also can help coordinate care as part of their role on the educational teams that work to meet the needs of CSHCN in the public schools, as mandated by IDEA. Among the team members, physical therapists often are the most familiar with the medical system and terminology, so they are frequently called on by teachers, administrators, and parents to help interpret medical records that the school receives and communicate with health care providers.39 School physical therapists also can serve as the intermediary between the educational system and the medical system and can help families negotiate both systems and understand the differences. School therapists also are often called on to coordinate care to improve the function of CSHCN within the school setting, such as acquiring seating and mobility equipment. School therapists might assist a family to order a new wheelchair for a child with spina bifida, for example, so the child could move around the school independently.
Physical therapists working in early intervention who are not serving as primary care coordinators can still play an informal care coordination role, particularly when they are the primary, most frequent provider. In this role, early intervention physical therapists could refer children and families to other medical or community-based services, help families locate and initiate those services, serve as a liaison between medical and early intervention teams, help parents and other nonmedical team members to interpret medical information and develop questions for medical providers, and facilitate communication among providers.39,40
Physical therapists can also take on an advocacy role to promote care coordination. Advocacy could include something as simple as talking with families, coworkers, and employers about needed care coordination activities and their benefits. Recognition of the need for care coordination and a pilot project to identify and implement care coordination strategies often are the first steps. Physical therapists could also contact their local, state, and national representatives to provide input on upcoming health care legislation to support the need for care coordination. One study of 12 peer-designated experts in physical therapy found that the majority of the experts “saw patient advocacy as a vital professional role, as demonstrated by the amount of time they spent working to get what was best for the patient through telephone conversations with case managers, writing additional letters or documentation, or serving the local and professional community in policy areas.”41(p39) Advocacy for care coordination and appropriate reimbursement is needed at all local and national levels.
Physical therapists could also be involved in research on the effectiveness of care coordination and studies of the contribution of care coordination among a multitude of other factors that influence outcomes for CSHCN. Physical therapists could participate in longitudinal studies that examine the long-term effect of coordinated care and access to rehabilitation services on health and wellness, as well as the prevention of secondary conditions. Studies have focused primarily on short-term potential for cost savings, such as reduced hospitalizations, but care coordination may have far reaching benefits that have not been studied, such as reduced rates of secondary conditions later in life due to better chronic condition management by the family and child. Coordinated care that is centered on child and family goals might demonstrate improved quality of life and perhaps better employment outcomes and community participation.
A consistent, accepted way to measure outcomes of care coordination, however, does not exist. A 2010 monograph by the AAP's National Center for Medical Home Implementation42 acknowledges the challenges to standardized measurement of outcomes after implementation of the medical home model, including lack of consensus on how to measure specific components of the model like continuity and coordination of care. Researchers will need to continue to develop validated tools to measure care coordination and its effect on the lives of CSHCN and their families.
Barriers to Care Coordination and Potential Solutions
Two of the major barriers to coordinated care are lack of time and little or no reimbursement for care coordination activities.8,39,40 Overcoming these barriers will likely require advocacy and subsequent systems change. Other problems that families and service providers of CSHCN have identified, however, may have solutions that can be implemented more quickly. Some of these include differing perspectives, priorities, and schedules of service providers that interfere with effective communication,38 high provider workloads,40 conflicting information from providers,39 Health Insurance Portability and Accountability Act (HIPAA) requirements that can interfere with timely sharing of information,40 and lack of understanding of the roles and expectations of practice in other settings and other systems of care.39,40
To help providers agree on priorities and the need for coordinated care, organizations could provide training for health care providers on the value and implementation of care coordination. With training, providers might think more broadly about a child's care rather than focusing on the specific services that they provide. This need is already being addressed with pediatric residents and community pediatricians through projects like the Medical Home Resident Education Initiative Workgroup and the Community Pediatrics Training Initiative that seek to improve skills in the areas of collaboration, communication, coordination, and family-centered care.42 Training programs also are available for other health professionals, including physical therapists, such as the Interdisciplinary Leadership Education in Neurodevelopmental and Related Disabilities programs available at a number of universities and a variety of conferences and seminars available periodically.43 Care coordination probably will receive increased emphasis in professional physical therapy programs and in postprofessional programs in pediatrics (see a list of postprofessional programs under Education Programs at http://www.apta.org) as the potential benefits become better known and the American Physical Therapy Association's public policy strategy to advocate for the role of physical therapists in care management is implemented. More information can be found on other Web sites, such as The National Center for Medical Home Implementation at http://www.medicalhomeinfo.org.
To increase communication, providers could ask families to sign information sharing release forms for all of their child's providers as part of their initial service intake process to avoid HIPAA violations. Another simple solution could be using secure e-mail systems to communicate more frequently rather than trying to make contact on the telephone, which can be difficult when providers are often away from their desks. We have included a table with strategies that physical therapists working in all settings can use to increase care coordination in their practice (Table 2).
Preparation for a Care Coordinator Role
Before assuming a care coordination role, some physical therapists, particularly those with professional bachelor's or master's degrees, might need more training in medical screening, identification of “red flag” symptoms, and differential diagnosis.44 Currently, the majority of accredited physical therapy education programs offer a degree of doctor of physical therapy, which requires additional content in diagnostics, imaging, pharmacology, histology, pathology, business practices, health promotion, and clinical decision making.45 When serving as a care coordinator, graduates of doctor of physical therapy programs should have the necessary knowledge and skills in screening and diagnostics to make appropriate medical referrals.
All physical therapists who assume a care coordinator role would benefit from education that addresses the principles and philosophy of care coordination including family-centered and culturally sensitive community-based care.38 Knowledge of available programs and services and their eligibility requirements38,39 also is important, along with knowledge of financial resources for services and equipment38 that children need. Families have emphasized that care coordinators should be able to communicate without using professional jargon, to support families socially and emotionally, and support families' ability to care for their child.39,40 Care coordinators also need to have an understanding of the various systems of care involved with a child and family and the roles and expectations of the other professionals.40 Team building and collaboration are related skills, and the ability to communicate and negotiate across professionals and settings is important.40
The increased emphasis on care coordination for CSHCN requires the ability to work effectively with other health care professionals. Physical therapists can take the initiative to stay updated about a child's health status in other areas by e-mailing or calling other health professionals, implementing and using electronic health records, or using other effective, innovative ways of gathering information. As the American Physical Therapy Association is advocating for direct access as a cost-saving measure, physical therapists need to be prepared to act as a child's care coordinator if they are the primary, most frequent service provider. To be able to make appropriate referrals and effectively coordinate care for children, knowledge about medical screening and care coordination principles are important as well as awareness of the variety of community services available.
The role of physical therapists in care coordination is likely to increase in the future. The physical therapist's role may vary from medical home team member to primary care coordinator to researcher, and the role may change as care coordination models and direct access continue to develop. People, technology, science, and society are changing at “warp speed.”46 Physical therapists need to be aware of and adapt to these changes to continue to be the provider of choice to promote and improve health, movement, and function.
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