HOW ARE "SPECIALIZED HEALTH CARE NEEDS" DEFINED?

Students with specialized health care needs require specialized technological health care procedures for life support and/or health support during the school day. These students may or may not require special education (CEC, 1988).

This broad-based functional definition was adopted by The Council for Exceptional Children in April 1988. Specialized health care needs is a relatively new term applied to a group of students who previously were unserved in educational settings. Although these students are often considered similar to students with other health impairments, their educational needs are complicated by extreme medical needs. Other terms sometimes used are medically fragile and technologically dependent. Many of these students have survived catastrophic medical events that require intensive and prolonged health care.

HOW MANY CHILDREN HAVE SPECIALIZED HEALTH CARE NEEDS?

Because classification of this group of students does not exist in educational databases, estimation of numbers is difficult. However, the Office of Technology Assessment (OTA, 1987) has estimated that as many as 100,000 infants and children may be technologically dependent in some way. OTA defines this group as requiring "a medical device to compensate for the loss of a vital body function and substantial and ongoing nursing care to avert death or further disability" (p. 3).

WHAT ARE THE CHARACTERISTICS OF CHILDREN WITH SPECIALIZED HEALTH CARE NEEDS?

Students with specialized health care needs have conditions that include ventilator dependence, tracheostomy dependence, oxygen dependence, nutritional supplement dependence, congestive heart problems, need for long-term care, need for high-technology care, apnea monitoring, and/or kidney dialysis (GLRRC, 1986). These students are similar in their needs for extreme medical care, usually including intervention while they are in school. However, each medical condition presents its own unique set of characteristics. These medical needs must be addressed before students can benefit from educational experiences. Medical concerns also may affect the learning potential of these students. Fatigue, limited vitality, short attention span, and limited mobility may accompany technological dependence and affect students' ability to benefit from educational opportunities. Therefore, their medical conditions must be stabilized before such students can enter educational programs.

WHAT ARE THE EDUCATIONAL IMPLICATIONS OF SPECIALIZED HEALTH CARE NEEDS?

Traditionally, students with specialized health care needs required such intensive medical attention that they could not attend school except in isolated settings in institutions and hospitals. Many did not survive their catastrophic medical conditions. However, modern medical practice and technology have created extensive interventions that stabilize medical conditions and provide these students with the physical ability to pursue classroom learning. In some cases, students still need the protection of specialized medical settings; however, most students can be placed in classroom settings that represent the continuum of educational opportunities. Such placement will depend on decisions made by interdisciplinary teams, parents, and medical personnel. These teams will consider health care needs, appropriateness of settings, risks to the student, and training of personnel before deciding on appropriate placement.

Before these students enter the classroom, teachers should consider several possible environmental and intervention adaptations. The classroom should be a hygienically safe but not sterile environment. Classroom schedules should allow for limitations related to fatigue and mobility. Assessment procedures and instructional intervention techniques may need adaptation to maximize students' ability to succeed academically.

Medical complications must be considered when developing schedules and curricular plans. Students may miss school due to medical conditions that require extensive rest or hospital-based intervention. Cooperative programs with home and hospital teachers can decrease the impact of such absences.

Of considerable concern is the tendency to overcompensate. Teachers should avoid "exaggerated deference to the medical implications of a child's handicap" (Hobbs, Perrin, Ireys, Moynihan, & Shayne, 1984, p. 212). Interruptions for suctioning, medication, or other medical interventions should be nondisruptive to the classroom and learning atmosphere. Focus should be on maximizing opportunities for educational success and social interaction, not on limitations and isolation. For example, class parties can include food treats that meet a student's dietary restrictions, or medical intervention can be completed during individual work times rather than during group learning activity periods.

Educational curricula are always chosen to meet individual student needs. Modifications for students with specialized health care needs may be similar to those adopted for students with physical disabilities. For example, adaptive response modes, adjusted timing requirements, or adjustment for limited hand use or mobility may facilitate learning success. Social interaction may be more successful if students use adaptive positioning equipment that enhances their potential for fuller participation in activities (Sirvis, 1988).

Parents, siblings, and families are an important part of the lives of children with specialized health care needs. Their role in habilitation and management of health care needs is critical. In addition, they can be an important support in the development of the independence necessary to make the educational experience successful. Often, families may need support and education in order to understand their own coping mechanisms as well as to develop a model of helping that will not create inappropriate co-dependence (Dunst, Trivette, Davis, & Weeldreyer, 1988).

Interdisciplinary planning can enhance the positive impact of the learning experience if special education personnel assume an active role in the development of plans. The primary role of the teacher is to provide a safe and appropriate learning environment.

REFERENCES

The Council for Exceptional Children (CEC). (1988, March). Report of The Council for Exceptional Children's Ad Hoc Committee on

Medically Fragile Students. Reston, VA: Author. Dunst, C. J., Trivette, C. M., Davis, M., & Weeldreyer, J. C. (1988). Enabling and empowering families of children with health impairments. Children's Health Care, 17(2), 71-81. Hobbs, N., Perrin, J. M., Ireys, H. T., Moynihan, L. C., & Shayne,

M. W. (1984). Chronically ill children in America. Rehabilitation Literature, 45, 206-213. Sirvis, B. (1988). Students with special health care needs.

TEACHING Exceptional Children, 20(4), 40-44. U.S. Congress, Office of Technology Assessment (OTA). (1987). Technology-dependent children: Hospital vs. home care--A technical memorandum (OTA Publication No. OTA-TMH-H-38).

Washington, DC: U.S. Government Printing Office.

OTHER RESOURCES

Aday, L. A., & Wegener, D. H. (1988). Home care for ventilator-assisted children: Implications for the children, their families, and health policy. Children's Health Care, 17(2), 112-120.

Baird, S. M., & Ashcroft, S. C. (1984). Education and chronically ill children: A need-based policy orientation. Peabody Journal of Education, 61(2), 91-129. Great Lakes Area Regional Resource Center (GLRRC). (1986).

"Medically fragile" handicapped children: A policy research paper. Columbus, OH: Author. Kaufman, J., & Lichtenstein, K-A. (n.d.). The family as care manager: Home care coordination for medically fragile children. In Workbook series for providing services to children with handicaps and their families. Washington, DC: Georgetown University Child Development Center.

Kirkhart, K. A., Steele, N. F., Pomeroy, M., Anguzza, R., French, W., & Gates, A. J. (1988). Louisiana's Ventilator Assisted Care Program: Case management services to link tertiary with community-based care. Children's Health Care, 17(2), 106-111.

Kleinberg, S. (1984). Facilitating the child's entry to school and coordinating school activities during hospitalization. In Home care for children with serious handicapping conditions (pp. 67-77).

Washington, DC: Association for the Care of Children's Health. Developed by Barbara Sirvis, Dean, Faculty of Applied Science and Education, and Professor of Exceptional Education, State
University College at Buffalo, New York.