Project School Care: Integrating Children Assisted by Medical Technology into Educational Settings
Palfrey, Judith S., Haynie, Marilynn, Porter, Stephanie, Bierle, Timaree, Cooperman, Paula, Lowcock, Joan, Journal of School Health
Studies of children assisted by medical technology suggest 20,000 to 100,000 children require daily nursing assistance because of the use of oxygen, respiratory assistance (ventilator), suctioning, gastrostomy or jejunostomy, colostomy, ureteral diversion or urethral catheterization, dialysis, and intravenous feeding. In Massachusetts, nearly 1 in 1,000 children depend daily on medical technology. Most observers agree that the increasing use of high technology care for chronic conditions contributes to the increasing prevalence of children with chronic illnesses. The rate of increase has yet to be determined and depends on interrelated factors, including true prevalence of particular chronic conditions, medical and surgical interventions chosen, financing, and other policies for care in and out of hospital-based settings.
Use of technological devices often allows children with chronic conditions to be discharged home. Moreover, the functional status of children with high severity conditions is frequently maintained at such a level to allow children to participate in normal home and community activities, including school. Schools are required by law[3,4] to provide educational opportunities to all children no matter how severe their handicapping condition. Increases in the use of medical technology produced a demonstrable impact on school systems, challenging schools to respond to a variety of cases. However, schools sometimes are poorly prepared to meet the health and education needs of these children.
PROJECT SCHOOL CARE
Recognizing the new developments in medicine and education, Project School Care was established in 1987 at the Children's Hospital, Boston, Mass. Project aims were to define the population of children dependent on medical technology more precisely than previously, to produce guidelines for safe provision of care in schools, and to offer consultation to schools and families around specific procedures (both technical and administrative) thereby enhancing the experience of children assisted by medical technology in schools. Finding regarding the population definition have been published and the guidelines prepared as a manual, Children Assisted by Medical Technology in Educational Settings: Guidelines for Care.
In 1989, with funding from the National Institute on Disabilities and Rehabilitation Research and the U.S. Bureau of Maternal and Child Health, Project School Care launched its consultation service program for school systems in Massachusetts. A nurse-physician team assisted schools and families at the time of matriculation of a child assisted by medical technology into public school. Several mailings informed schools about the program. Parents were informed through articles in family-oriented newsletters and a feature article in Exceptional Parent magazine.
The background and training of the nurse and doctor on the consultation team include extensive hospital experience caring for children with complex medical conditions and medical technology dependency. In addition, both have worked with community agencies as consultants. As the parent of a child assisted by medical technology, the nurse has a personal understanding of the needs and concerns of parents. She also has a network of social, nursing, and educational resources to share with families. A second nurse joined the team in fall 1990.
THE CONSULTATIVE SCHOOL MODEL
The Project School Care approach was designed to ensure children assisted by medical technology would have as normal an educational experience as possible. Figure 1 depicts the major elements of the process: referral, creation of the student's team, assessment, planning, development of the Health Care Plan, training, enrollment of the child into the chosen school placement, ongoing follow-up, monitoring, and evaluation.
Early Referral of the Student into the Educational Setting. The time between discharge from the health care arena and the beginning of services in the educational setting represents a major problem. …