Meeting the educational needs of children who are ventilator assisted poses an enormous challenge for parents, educators, and medical personnel. Much of the challenge stems from a lack of policies regarding provision of services to children supported by medical technology. Although the Individuals with Disabilities Education Act (IDEA) ensures educational and related services for students with special needs, its policies were never intended to address all of the education and certainly few of the health-related requirements of children who are chronically ill or technology dependent (Walker & Jacobs, 1984). Consequently, schools and families must make difficult decisions regarding educational placement and service provision without sufficient guidance and support from IDEA or its regulations. Given the general absence of policy mandates or guidelines, it is not surprising that many school systems refused to admit or inappropriately placed or served children with complex health care needs (U.S. Department of Health and Human Services, 1988).
Children who are ventilator assisted compose one of several subgroups of students classified as technology dependent (U.S. Department of Health and Human Services, 1988). They require mechanical ventilation to sustain them because of life-threatening respiratory disorders. Etiologies that sometimes necessitate ventilator support include bronchopulmonary dysplasia, neuromuscular disease (e.g., muscular dystrophy), and injuries (e.g., spinal cord injuries or brain stem contusions). As with other children who are technology dependent, children who are ventilator assisted require ongoing daily care or periodic monitoring by trained personnel (U.S. Department of Health and Human Services).
Until about 15 years ago, most children supported by mechanical ventilation lived in hospitals or long-term care facilities. Major improvements in the portability of ventilator equipment and the increased availability of home nursing support have now made home placements a viable option for many families (Lehr, 1990). Concerns about cost containment have also spurred the transition from hospital to home and community care. One consequence of the shift to home care is that more and more school systems are facing the challenge of providing services to students who are ventilator assisted. The most accurate recent estimate is that there are between 700 and 2,000 children who require ventilator assistance either full time (24-hr continuous support) or part time (U.S. Congress, 1987). The continued refinement and broader application of medical technology suggests that the number of children who are ventilator assisted will continue to grow.
IDEA mandates that children with ventilator support should be classified as "other-health impaired" for IDEA purposes [34 C.F.R. Part 300, Sec. 300.7 (b)(8)], but national data on these students' placements (U.S. Office of Special Education and Rehabilitation Services, 1993) show that the schools classify them not only into the OHI category but into other categories as well. Further, educational placement for these children is highly dependent on available resources. These resources may be affected by the child's geographical location, the degree to which services are coordinated (U.S. Congress, 1987), availability of competent staff, attitudes of educational service providers, funding limitations, legal liability, and state and federal educational policy (D. K. Walker, 1987; P. Walker, 1991).
In a study of school and family perspectives on the needs of children with chronic illnesses, Lynch, Lewis, and Murphy (1992) found that parents were generally satisfied with educational programs for their children. Parents, however, underscored the need for educators to better understand the pervasive effects of chronic illness on children's lives. Lynch, Lewis, and Murphy suggested that schools and families have differing concerns and priorities regarding educational services for children with complex health care needs. …