Children With Health Problems
In response to reforms in healthcare and education, there has been an increased emphasis on addressing the needs of children with medical conditions in the community and school settings. Among the many changes occurring in the healthcare system, the managed care movement has precluded the hospitalization of many children with serious health needs and has resulted in a briefer duration of hospitalization for many who are admitted.
As a result, there has been increasing reliance on community-based resources, including the school, to address the needs of children with serious medical conditions. The em-phasis in healthcare reform on increasing the accessibility and coordination of services for children and families has also affirmed the critical role of the school as a venue for delivering healthcare services. Changes in educational law have highlighted the responsibility of the school in addressing the needs of children with special health conditions. Under the provisions of the Individuals with Disabilities Education Act, children with acute and chronic health conditions whose educational performance is substantially affected by their illnesses may be eligible for services and protections afforded in the special education system.
Even if children with health conditions do not require special education, they may be eligible for safeguards provided by Section 504 of the Rehabilitation Act of 1973. Educational law has emphasized that children with disabilities, including those with medical conditions, are entitled to receive services in the least restrictive and most normalized setting feasible given the nature and extent of their impairments. This chapter reviews the school problems that children with health conditions may encounter and the challenges that families, peers, and school personnel often face in addressing these children’s needs. School programs developed to address the concerns of children with special health needs are critically reviewed. In this chapter, we propose a model of school integration based on the principles of social-ecological theory and behavioral consultation. The model emphasizes the importance of link-ing healthcare, educational, and family systems to resolve problems and promote competence among children with health conditions. A case is described to illustrate the steps of school integration.
THE CHALLENGE OF SCHOOL
Children with health conditions often experience significant challenges in adapting to school. Those with disabilities or chronic illnesses that arise in early childhood may face challenges with school integration from the beginning of elementary school. Others may acquire an illness or disorder that interrupts developmentally appropriate functioning, resulting in significant, acute problems with school reintegration.
Factors Contributing to School Problems
The school challenges encountered by children with health problems vary as a function of numerous factors.
The nature of the child’s medical condition obviously is an important factor, and children with the same illness can differ greatly in the challenges they experience in school. The problems children encounter in school can vary as the course of the condition unfolds. For example, with TB1, a child’s neuropsychological functioning can change dramatically during the first several months after the trauma. Also, the developmental level of the child is usually a critical factor. For example, the emotional and social concerns that an adolescent with cancer experiences are typically very different from those of an elementary-school-age child. The child’s experience in school may be related to the beneficial and adverse effects of the medical treatments being used. For example, medications for seizure disorders may vary in their effectiveness from child to child and may be associated with adverse effects on attention and memory.
The child’s and family’s adherence to the intervention, which may be strongly influenced by the quality of the collaboration between the family and health professionals, may determine the extent to which treatment is effective. In addition, the school ecology, the teacher’s knowledge, and skills in working with the child, and the relationship between family and school can have an impact on the child’s school experience.
Effects on School Performance
Medical conditions can have an effect on children’s school performance in many ways. Some health conditions, such as cancer and asthma, may result in heightened levels of school absenteeism, which is often associated with poor academic performance and a sense of social isolation. Many health conditions, particularly those that involve the central nervous system, have an effect on the child’s cognitive functioning, which in turn can have a deleterious effect on academic achievement. Furthermore, although children with chronic illnesses have been shown to be remarkably resilient with regard to their peer functioning and psychological adjustment, they often experience significant coping challenges within the family, school, and peer group.
Health problems can have an effect on significant persons in a child’s life, which in turn can have an impact on school functioning. Teachers may be uncertain about how to instruct a child with health problems. They often have concerns about how to address the behavioral, emotional, and social problems these children present in school, which could have an effect on the quality of the teacher-child and family-school relationships. Peers may not know how to relate to a child with health problems and may engage in behavior that is neglectful or rejecting the child. Furthermore, parents may have ambivalent feelings about sending their ill child to school, and they may lack confidence in the teacher’s ability to work effectively with their child.
PROGRAMS TO FACILITATE SCHOOL INTEGRATION
Most of the research related to school integration has focused on the school reentry of children with cancer and TBI. Children with a wide range of other disabilities and illnesses also may experience significant problems with school integration and reintegration. Nonetheless, models of programming for children with cancer and TBI may be applicable for children with these other conditions. The following is a brief review of the types of programs that have been described in the literature.
Skills Building Programs
One approach to intervention has been to focus on enhancing the strategies and skills of the child with the illness. There are numerous examples of programs that have been established to build individual skills and strategies for children with disabilities and illnesses. Cognitive remediation, which is often applied with children who have TBI or a brain tumor, is designed to improve the child’s cognitive assets and to develop compensatory strategies in areas of cognitive weakness. Social skills training, which has been applied with children who have a broad range of disabilities and illnesses, is designed to facilitate the development of children’s skills in social perception, problem-solving, and emotion regulation.
Research regarding the effectiveness of programs focused on developing individual skills has been very limited. At this point, there is little empirical support for these methods, although clinicians often report that they have a high level of utility. Likewise, concerns have been raised about the effectiveness of these types of interventions in improving academic and social performance in actual school settings over extended periods of time.
Teacher Education Programs
The purpose of teacher education initiatives is to
(1) provide instruction to teachers about a particular medical condition
(2) describe attitudes that children and their families may have about the condition
describe the challenges that children with this condition often experience in school
(4) present strategies for assisting children in the areas of academic, social, and emotional functioning
Work-shops often are presented by one or more health professionals, including physicians, nurses, pediatric psychologists, and social workers. These programs typically improve teacher knowledge about a specific illness and teacher perceptions of self-efficacy in addressing the needs of children with health conditions. Unfortunately, data regarding the effectiveness of these programs in improving child out-comes typically are lacking.
Peer Education Programs
Peer education initiatives typically are designed to improve the level of peer support offered to children with disabilities and illnesses in school. During these programs, peers receive instruction about
( I ) the potential impact of illness on children
(2) the unique challenges of children with illnesses
(3) the difficulties these children may experience with peer interactions
(4) strategies for providing peer support.
A variety of strategies, including verbal instruction, modeling, and role-playing, often are used to facilitate the educational process. Research has demonstrated that these programs frequently lead to improvements in peer knowledge about medical conditions and increased interest in interacting with children who are ill. Alternatively, research has not clearly demonstrated that these programs have a beneficial effect on peer behavior in interactions with ill children. Furthermore, these programs often fail to consider potential adverse effects on children with illnesses and disabilities, such as social isolation from peers or self-consciousness on the pan of the child with a medical condition.
The most successful school integration programs typically include multiple intervention components and make provisions for extended follow-up care. A critical component is understanding and facilitating the child’s adjustment in the family system. The presence of an illness or disability can have a significant effect on parent-child and sibling relationships. Clinicians can serve a critical role in assessing relation-ship patterns that emerge in response to illness and in facilitating family interaction patterns that promote healthy development. A family that is able to adapt successfully to illness can be invaluable in assisting with the child’s adjustment to school by engaging teachers in collaborative problem solving, and by supporting educational activities in the home environment. Another essential component is the orientation of personnel in the school system.
Sharing information about the child’s illness through written materials and brief presentations can be useful in preparing educators. In addition, teachers need information about the specific needs of the child with an illness and consultation about intervention strategies. For example, teachers may need to develop strategies to address frequent absences from school, problems in acquiring academic skills, deficits in attention and self-control, and problems with peer interaction. In many cases, children need an individualized education plan through IDEA or an individualized service plan through Section 504.
Clinicians can be highly useful in promoting collaborative relationships among the family, school professionals, and healthcare providers to develop potentially effective, socially valid, and feasible intervention plans. Addressing the child’s needs for support in peer interactions also is an important intervention component. Educating peers about the child’s illness and working with them to develop strategies to assist the child in peer interactions may be useful in promoting successful school integration.
However, many children with chronic health conditions require more intensive intervention that may involve social skills training for target children, the inclusion of nontarget peers in the intervention program, and training of school personnel to prompt and reinforce the use of effective social strategies. Because the school status of a child with a medical condition can vary markedly over time, particularly in the early stages of illness, the inclusion of a follow-up component is necessary. School personnel, health professionals, and families can benefit from ongoing consultation to monitor the child’s progress and modify the educational plan as needed.
SCHOOL INTEGRATION MODEL
Regardless of the type of intervention program that one uses to facilitate the integration of children with health problems into the school setting, success depends on the effectiveness of the process through which the program is delivered, as well as the specific strategies employed. The concept of integration referred to here is the full participation of students with health problems into the fabric of everyday life within the school setting. The literature regarding integration has been focused primarily on students with health problems who have been physically removed from the school setting because of medical concerns and are re-introduced into the schools. Our view of the integration process, which is similar to the concept of inclusion in special education, is broader and includes those students with health concerns who have been excluded from many of the daily activities of the school setting.
Although they are not physically removed from the school building, they may be psychologically excluded from ongoing school life, resulting in poor attachment with teachers and a sense of isolation from peers. Given that families of children with health problems receive advice from numerous professionals about strategies for school integration, establishing strong connections between educational and medical professionals is essential. Linking professionals from different systems can be a challenge, considering the differences in models of service delivery, domains of care, vocabulary specific to each discipline, and the methods used to evaluate outcomes. An additional challenge to successful collaboration is that professionals from various disciplines and systems need to communicate a clear, unified set of messages to families in order to promote successful school integration.
The process of establishing and maintaining strong connections among the family, healthcare, and school systems is as important as the specific strategies used to assist the child with integration. The developmental-ecological theory provides a highly useful framework for establishing a process to link the family, healthcare, and school systems to facilitate school integration. According to Bronfenbrenner’s model, it is essential to know how a child functions within each major system in which he or she operates, and to un-demand how functioning in each system serves to promote or impede adaptation in another system.
Understanding child adaptation within and across multiple contexts requires multi-informant, multimethod assessment involving the input of family members, school personnel, and healthcare professionals. Linking assessment with intervention in the process of integration can be facilitated by an understanding of the functional relationships be-tween child behavior and the biopsychosocial contexts in which the child operates. Although template approaches to treatment that involve the matching of intervention protocols to individual symptoms or symptom clusters may have some clinical value, treatment generally is more effective when strategies are tailored to address the unique functional relationships that exist between behavior and biopsychosocial determinants.
The field of applied behavior analysis includes a set of methods that have been demonstrated to be highly useful in understanding these functional relationships and in devising individualized intervention plans. Furthermore, the process of integration must be continuous with the modification of the intervention based on data collected through a formative evaluation process. The monitoring of student progress must be responsive to the needs of the child as well as the changing capacity of the family, school, and healthcare systems to meet these needs. Figure 4.1 illustrates a model for integrating students with health problems in schools. The model involves a two-phase process that is implemented in four steps.