Excerpted from Children and Youth Assisted by Medical Technology in Educational Settings: Guidelines for Care, Second Edition, edited by Stephanie Porter, M.S.N., R.N., Marilynn Haynie, M.D., Timaree Bierle, B.S.N., R.N., Terry Heintz Caldwell, Ed.D., & Judith S. Palfrey, M.D.

Copyright © 1997 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

This manual and its guidelines are intended for use by parents and professionals who care for children and youth who are assisted by medical technology. Parts of this manual are written for people with little or no medical background. Other parts detail the specific conditions on a daily basis. Many of the materials are intended for distribution and daily use. Forms to use to develop individualized health care plans (IHCPs), emergency plans, checklists, and an informational introductory letter about each procedure/technology are included and may be photocopied.

The manual is divided into two sections. Section I, Children and Youth Assisted by Medical Technology in Educational Settings, comprises Chapters 1-6, and Section II, Guidelines for Care, comprises the various procedures, checklists, and guidelines themselves.

Chapters 1-3 outline important issues related to caring for children with special health care needs: Chapter 1 provides information about students' participation in school and includes an overview of medical technologies, educational needs of children, socioeconomic considerations, and firsthand experiences of parents and professionals. Chapter 2 presents information about federal, state, and case laws, as well as regulations and professional standards, as they related to children and their health providers. This chapter discusses PL 101-476, the Individuals with Disabilities Education Act of 190; due process; Section 504 of PL 93-112, the Rehabilitation Act of 1973, fostering teamwork; and additional public laws and case laws. Policies and position statements related to do-not-resuscitate orders are also presented. Chapter 3 reviews the process of developing safe and educationally relevant school programs for students with special health care needs. Roles of various team members in a team approach are outlined; and specific steps are reviewed for meeting with the child and family after referral to assessment, planning, developing an IHCP, training, implementation, monitoring, and evaluation.

Chapter 4 provides overview information on planning and providing safe transportation for children with special health care needs. Several areas discussed include applicable laws and regulations, specialized seating and positioning, and personnel and training.

Chapter 5 reviews special health concerns including universal precautions, latex allergies, and human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome. This chapter also addresses the recommended practices and supports for children who have HIV and are attending school.

Chapter 6 provides useful documents to assist families and school personnel in considering all elements of care for children. Tools to develop an IHCP are included, as are guidelines for cultural assessment, a checklist for considerations in developing an individualized education program, and a general classroom inclusion checklist. These documents are reprinted in this book by permission of the individuals who created them; they are provided here to be adapted by families and school staff to develop a specific plan of care for children in school.

Section II addresses procedural guidelines for enteral feeding intravenous lines, dialysis, clean intermittent catheterization, ostomy care, and respiratory care. Each procedural section reviews physical anatomy and function, the purpose of the procedure and equipment, suggested settings and personnel, and issues for consideration in developing a child-specific plan for care. Each procedure highlights points to remember and possible problems that may require attention.

The procedural guidelines section is followed by skills checklists that can be used for teaching and training school staff. Each skills checklist assists the trainer in assessing the learner's knowledge of preparing for the procedure, identifying necessary supplies, and performing the procedure. Each skills checklist should be adapted to each specific student and his or her needs and concerns.