Defining Children with Special Health Care Needs

The designation of children with special health care needs has long been characterized by a lack of standard definition. The definition recommended by the Federal Maternal and Child Health Bureau (MCHB) and accepted by the Academy of Pediatrics as well as a variety of advocacy groups is as follows:

Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.¹⁰

The development of this definition was the result of a longstanding frustration with the difficulties inherent in interpreting studies using different definitions as well as the practical concern that many CSHCN were not being identified.^{11, 12}

Although the MCHB definition is widely recognized as an important step forward in providing the field with a standard definition, the actual implementation of this definition in large health programs remains highly variable. All state programs rely on some definition of children with serious, chronic conditions. These are used for eligibility criteria in a variety of medical, early intervention, and educational programs. Most of these draw at least some of their funding from Federal sources which in turn have definitional guidelines regarding disabling or chronic conditions in children. In addition, a growing number of Federal health and educational surveys are attempting to capture the prevalence and severity of chronic health problems in children. All of these considerations have underscored the utility of clarifying definitional issues, if not agreeing on a universal definition. In part, this variation is due to the difficulties inherent in translating this definition into variable sets that are generally available in extant administrative or other databases.¹³ State-administered programs such as Medicaid, for example, may rely on information sources that do not possess the requisite data to assess an “increased risk for chronic physical, developmental, behavioral, or emotional condition” or enhanced requirements for services.¹⁴ Even when such data might be available in collected data sets, the bureaucratic mechanisms to utilize these data to make judgments regarding each individual child may not be in place. Therefore, proxy variables or variable clusters are often employed by a variety of child health programs to define CSHCN. Among the most prominent definition strategies include:

• Categorical definitions based upon diagnoses or clinical conditions perceived to convey a significant risk for morbidity or mortality.
• Service definitions based upon elevated patterns of service utilization.
• Functional status definitions based upon the inability of the child to perform expected, age-appropriate functions or activities.
• Programmatic definitions based upon enrollment in specific programs.
• Cost definitions based upon elevated health care and other service costs.

The utility of each of these strategies depends upon the specific objectives for which they are designed to address. In general, identification systems that depend upon administrative data will tend to employ programmatic or categorical approaches.¹⁵–¹⁸ Efforts to identify CSHCN based upon parental survey data will tend to emphasize functional definitions.¹⁹–²¹ However, the inclusion of survey derived functional status information in administrative data sets may be feasible in some settings.²² Moreover, these approaches often blur distinctions between definitions of CSHCN and those for disability, which pertain directly to reduced function or impairment.^{23, 24}

Also of concern is that the MCHB definition captures a highly heterogeneous group of children with a variety of conditions and severity. While this is an inherent strength of the definition in linking the functional needs of a large group of children, it also can obscure the special character of embedded subgroups of children. It can also undermine the MCHB definition's utility as a means of identifying selected groups, including the neediest, of children. Many programs, therefore, have used more restricted definitions because of programmatic or policy-based eligibility regulations.

There are no recent assessments of how states or other large health care programs are identifying CSHCN. However, based on cursory review of available state Medicaid program information, there remain a variety of definitions being utilized, including lists of diagnoses considered severe and chronic and participation in programs such as the Supplemental Security Income (SSI).

Defining Care Coordination for Children with Special Health Care Needs

There remains no standard definition of care coordination which in many ways, reflects a lack of a widely accepted theoretical base for care coordination.²⁵ This lack of a standard definition has been largely due to the different purposes for which care coordination efforts have been designed. Even within the relatively limited arena of child health care there has been no consensus on what specifically care coordination actually means. Moreover, there was a tendency to approach care coordination not by proposing a general definition but rather by listing its most important objectives or requirements.

A useful foundation for considering the definition of care coordination for children is provided by the Academy of Pediatrics (AAP) in the1999 statement by its Committee on Children with Disabilities, “Care Coordination: Integrating Health and Related Systems of Care for Children with Special Health Care Needs,” suggested that

Care coordination occurs when a specified care plan is implemented by a variety of service providers and programs in an organized fashion.²⁶

The statement references only two empirical studies in support of care coordination; one was published some 16 years earlier²⁷ and the other was confined to a relatively small sample of severely affected children.²⁸ The statement goes on to present the goals of care coordination as being to:

• Gain access to and integrate services and resources
• Link service systems with the family
• Avoid duplication and unnecessary cost
• Advocate for improved individual outcomes

The procedures to accomplish these goals are less clearly stated, however. In part, this reflects the position of the Committee that the respective responsibilities and mechanisms of coordination are dynamic and may need to be tailored for different families or geographic settings. Nevertheless, the statement suggests that care coordination must address four domains: the health care system; the educational system; the social service and public health systems; and the home setting. Significantly, the statement suggests that the leader of care coordination for the child be a family member, with pediatricians and other professionals assisting as needed. Professionals would assume primary responsibility for care coordination only when family members could not perform this function. The statement underscores that even in this circumstance it is essential to involve the child and family members in all care coordination planning and implementation.

Subsequent to the 1999 AAP statement, most definitions of care coordination for children are in some way linked to a particular model of care provision, the “medical home”. Although the concept of the medical home is not inherently confined to child health, it has, nevertheless, been embraced far more fully in the pediatric arena as the basis for care coordination. The importance of the medical home as an organizing framework for pediatric care coordination is reflected in its adoption in Healthy People 2010 which calls for “an increase in the proportion of children with special health care needs who have access to a medical home.”²⁹ Indeed, most recent discussions of care coordination in the pediatric literature have been framed by the requirements of the medical home. Therefore, given the intent of this section to review the definition and elements of care coordination specifically for children with special health care needs, it is necessary to examine the coordinative elements of the medical home framework.

The concept of the medical home is not new. It has its roots in the services provided by the settlement houses in Chicago and New York at the turn of the century and was broadly outlined in the American Academy of Pediatrics' Standards of Child Health Care published in 1976.³⁰ However, in 1992 an ad hoc task force of the AAP attempted to provide a more detailed definition of the medical home.³¹ Although no unifying definition was presented, the essential elements of the medical home were outlined and included:

• Provision of preventive care
• Assurance of ambulatory and inpatient care at all times
• Assurance of continuity of care
• Appropriate referral and transfer of necessary information to consultants and families
• Interaction with school and community agencies
• Maintenance of a central record and data base

Interestingly, care coordination was not listed among the requisite elements, although continuity of care is considered by some to relate to care coordination.²⁵ Rather, the statement was more concerned with providing a clear standard of comprehensive responsibility for physicians providing care for children. The statement, therefore, defined the medical home as falling under the leadership of physicians, suggesting even that directing physicians should be “well-trained in primary pediatric medicine, preferably pediatricians.”

In 2002, this general approach to the medical home was reaffirmed by the AAP in a policy statement³² developed as part of a strengthened medical home initiative.³³ However, this statement provided a far more detailed description of the essential components of the medical home than that published in 1992. As in the earlier statement, the medical home was directly embedded in physician-led, primary care practices, although there was no longer an expressed preference for pediatricians specifically. However, unlike the earlier statement, this report explicitly argued that care coordination is an essential component of the medical home. Specifically, it listed this coordinative component of the medical home as consisting in turn of the following eight elements:

1.

A plan of care is developed by the physician, child or youth, and family and is shared with other providers, agencies, and organizations involved with the care of the patient.

2.

Care among multiple providers is coordinated through the medical home.

3.

A central record or database containing all pertinent medical information, including hospitalizations and specialty care, is maintained at the practice.

4.

The medical home physician shares information among the child or youth, family and consultant and provides specific reason for referral to appropriate pediatric medical subspecialists, surgical specialists, and mental health/developmental professionals.

5.

Families are linked to family support groups, parent to parent groups, and other family resources.

6.

When a child or youth is referred for a consultation or additional care, the medical home physician assists the child, youth, and family in communicating clinical issues.

7.

The medical home physician evaluates and interprets the consultant's recommendations for the child or youth and family and, in consultation with them and subspecialists, implements recommendations that are indicated and appropriate.

8.

The plan of care is coordinated with educational and other community organizations to ensure that special health needs of the individual child are addressed.

However, while these care coordination elements were clearly applicable to all children, including those with special health care needs, it is important to recognize that the medical home framework as outlined above was not specifically directed at children with complex health problems. Indeed, while the AAP's 1999 description of care coordination for CSHCN and its 2002 statement on the medical home clearly shared general goals and values, a comparison of these two approaches to care coordination does suggest important differences in emphasis if not content.

As noted above, the care coordination document³² while strongly recommending collaboration between families and professionals, does clearly suggest that the family and not the physician serve as the primary locus of care coordination in most instances. The role of the physician is largely facilitative. The medical home definition, on the other hand, identifies a primary care physician as the individual principally responsible for care coordination. As a consequence of this distinction between the two approaches, a focus on CSHCN tends to emphasize coordination of specialty care, home care services, special educational programs, and social services, while the medical home tends to emphasize the role of primary care.

These tensions in the respective strategies for care coordination have been generally addressed by a gradual formulation of a middle ground: care coordination for CSHCN has increasingly embraced the medical home as an important potential strategy and the medical home has in many ways become more open to a greater leadership role for the family and alternative health care professionals. This middle ground was constructively articulated in a cogent review by Cooley and McAllister which presented a care coordination model that was attentive to the requirements of both the medical home and care coordination principles for CSHCN.³⁴ Using the experience of actual pediatric practices, they suggest that ongoing family inclusion in the development and implementation of the medical home for CSHCN is essential as is the role of a designated practice-based care coordinator. This same integrated approach is represented by a 2005 AAP policy statement, entitled “Care coordination in the medical home: Integrating health and related systems of care for children with special health care needs”.³⁵ Once again, care coordination is not explicitly defined here but rather

...occurs when care plans are implemented by a variety of service providers and programs in an organized fashion. Care coordination is multifaceted. It involves needs identification, assessment, prioritizing and monitoring.

As in the Cooley and McAllister paper, this most recent AAP statement embeds the medical home as a component of care coordination but does not assign to it a specific set of coordinative responsibilities. Rather, it suggests that

...its role is not fixed or determined by a defined set of tasks. Instead, it is a dynamic process driven by the health status and developmental progress of the child, the specific needs of the child and family, the primary care physician's expertise with children with special health care needs, and the ability of the family and/or other professionals to participate in care coordination.

This lack of a defined role for clinicians and medical practices respects the heterogeneity of patient and family needs, local resources, and clinical capacities. This in turn implies that the appropriate coordinative role of clinicians and practices in care coordination for CSHCN must rely on intensive and ongoing interaction between patients and their families, primary care clinicians, and virtually all service providers involved in the child's care. The lack of a defined role implies continuous or at least regular assessment and reassessment of the quality of care coordination in order to know whether alterations in roles or contributions to the care plan are required. Although accountability for assuring that these assessments occur and are responded to remains vague, it is generally implied in the various approaches that clinicians and clinical practices have some basic responsibility for these requirements.

In response, a series of instruments and suggested procedures have been developed for primary care practices to assess the adequacy of care coordination. The Medical Home Index provides standard items for assessing the quality of the medical home, including care coordination components, including continuity of care, appropriate use of subspecialty consultation, interaction with school and community agencies, and a central, accessible medical record.³⁶ In addition, practice-based tool kits for the development and evaluation of medical home care characteristics for CSHCN have been developed and are being used in a variety of states.^{22, 37}