A Content Analysis of Policies and Procedures for Serving Children with Special School Health Needs in Early Education Environments

A CONTENT ANALYSIS OF POLICIES AND PROCEDURES FOR SERVING CHILDREN WITH SPECIAL SCHOOL HEALTH NEEDS IN EARLY EDUCATION ENVIRONMENTS by Barbara G. Minzenberg B.S. Indiana University of Pennsylvania, 1973 M. Ed. University of Pittsburgh, 1975 Submitted to the Graduate Faculty of School of Education in partial fulfillment of the requirements for the degree of Doctor of Philosophy University of Pittsburgh 2008 UNIVERSITY OF PITTSBURGH SCHOOL OF EDUCATION DEPARTMENT OF INSTRUCTION AND LEARNING This dissertation was presented by Barbara G. Minzenberg It was defended on June 18, 2008 and approve by Heidi M. Feldman, MD, PhD, Developmental Psychology, Professor of Pediatrics, Stanford University School of Medicine Donna H. Lehr, PhD, Associate Professor/ Special Education Program Coordinator, Curriculum and Teaching, Boston University Charlene Trovato, PhD, Clinical Associate Professor/Associate Chair, Administrative and Policy Studies, University of Pittsburgh Naomi Zigmond, PhD, Professor Department of Instruction and Learning, Education of Students with Mental and Physical Disabilities, University of Pittsburgh Dissertation Director: Louise A. Kaczmarek, PhD, Associate Professor Department of Instruction and Learning, Early Intervention/Early Childhood Education, University of Pittsburgh ii Copyright by Barbara G. Minzenberg 2008 iii A CONTENT ANALYSIS OF POLICIES AND PROCEDURES FOR SERVING CHILDREN WITH SPECIAL SCHOOL HEALTH NEEDS IN EARLY EDUCATION ENVIRONMENTS Barbara G. Minzenberg, PhD University of Pittsburgh, 2008 Children with special school healthcare needs (CSSHN) are entering early education environments with increasing frequency. Advances in medical technology and interest in providing early education in least restrictive environments are cited as the reasons for the phenomenon. Most often, full-time nurses are not available in such settings to care for the needs of children with medical complexities. And yet, case law dictates that the delivery of nursing services is indeed the responsibility of the local education agency and, furthermore, that such nursing services do not need to be related to a special education program in order to be provided (Diaz, 2000). This case law, coupled with a current overall shortage of school nurses, results in a certain conundrum for early educators (Barrett, 2000). Literature is reviewed about the attitudes of teachers and other personnel, the delegation of nursing duties to unlicensed assistive personnel (UAP), and the needs of school entities and staff members in serving this population of children. Taken together, the studies indicate that the body of knowledge is growing about how to best serve children with such needs and that further study is needed to keep pace with medical advances that enable increasing numbers of children to access least restrictive environments. iv Via this research, policies and procedures were gathered from early intervention service providers across the Commonwealth of Pennsylvania revealing the extent to which agencies have formalized planning for supports and services to CSSHN. The text from the policies and procedures was coded and analyzed to reveal the elements of service delivery to Children with Special School Health Needs (CSSHN) receiving early childhood special education (ECSE). The study concludes with a suggested framework for practice in serving CSSHN. v TABLE OF CONTENTS PREFACE XI I. INTRODUCTION 1 A. Stories of Children with Special School Health Needs: Habeeth, Krista, Tamoyya, and Charlie 1 1. Habeeth 1 2. Krista 2 3. Tamoyya 3 4. Charlie 4 B. Considerations 6 C. Definitions 6 D. Prevalence of the Population 10 E. Location of Service Delivery 12 F. The Challenge 13 1. Advanced Medical Technology 13 2. Federal and State Educational Mandates 14 3. Case Law 18 4. Healthy People 2010 20 G. Nursing Services in Educational Settings 21 1. Lack of Nursing Personnel 21 2. Delegation of Nursing Duties to Unlicensed Assistive Personnel (UAP) 24 3. Use of Paraprofessionals and Other School Personnel 26 H. Summary 28 II. REVIEW OF THE LITERATURE 29 A. Prevalence of the Population 30 1. Summary 35 B. Delegation of Nursing Duties to UAP 36 1. Summary 41 C. Families of Children with Special School Health Needs 42 1. Summary 51 D. Serving CSSHN in Educational Settings 52 vi 1. Current Status and Needs of School Systems 52 a. Summary. 64 2. Current Status and Needs of Staff Members 66 a. Summary. 74 3. Current Status of Law and Litigation 74 4. Evaluation of an Intervention or Model Program 75 a. Summary. 82 5. Prediction of Future Trends 83 E. Implications for Practice and Further Research 84 III: STATEMENT OF THE PROBLEM 88 A. Definitions 91 B. Research questions 92 IV: METHODOLOGY 93 A. Solicitation of Participants 93 B. Data Collection and Preparation 95 C. Selection of Coding Software 96 D. Developing the Data Dictionary and Rules Guide 97 E. Coding Process 99 1. Establishing Inter-coder Reliability 101 V: FINDINGS 106 A. Agency Identifiers: Base Data 106 B. Element I: Training and Information 112 C. Element II: Input, Participation, or Responsibility 115 D. Element III: Logging, Documentation or Record Keeping 118 E. Element IV: Individualized Planning and Services 120 VI: DISCUSSION 124 A. Status of Current Practice in Serving CSSHN in Pennsylvania 124 1. Base Data 125 2. Training and Information 127 3. Input, Participation, and Responsibility 132 4. Logging, Documentation, or Record Keeping 138 5. Individualized Planning and Services 139 B. Limitations of the Study 145 vii C. Implications for Future Research 146 VII: SUGGESTED FRAMEWORK FOR PRACTICE 147 A. Policies and Procedures Necessary to Ensure Healthy Early Education Environments 147 B. Policies and Procedures Needed to Ensure Sound Practice for CSSHN 149 C. Emergency Planning 152 D. Access to and Use of Nurses 153 E. Taxonomies 156 1. Taxonomy of CSSHN by Health Status 156 2. Taxonomy of Procedural Risk 159 3. Taxonomy of Personnel Developing IHPs and Providing Training and Information 161 4. Taxonomy of Personnel Implementing Individualized Healthcare Plans 163 F. Conclusion 166 APPENDIX A LETTER OF EXPLANATION TO MAWA SUPERVISORS 168 APPENDIX B TALKING POINTS USED WITH MAWA SUPERVISORS 170 APPENDIX C FORM USED FOR MAWA RESPONSE 172 APPENDIX D DATA DICTIONARY AND RULES GUIDE 173 APPENDIX E NODE SYSTEM FOR SERVING CSSHN IN LRES 190 APPENDIX F RANDOMLY SELECTED DOCUMENTS 203 APPENDIX G POLICY ON ADMISSIONS 205 APPENDIX H POLICY ON FEEDING CHILDREN WITH NUTRITIONAL SPECIAL NEEDS 206 BIBLIOGRAPHY 207 viii LIST OF TABLES Table 1. Pennsylvania MAWAs by size, counties, regional keys, and response status Table 2. Findings related to Training and Information Table 3. Findings related to Input, Participation, and Responsibility Table 4. Findings related to Logging, Documentation, or Record Keeping Table 5. Findings related to Individualized Healthcare Planning and Services ix LIST OF FIGURES Figure 1. Policies and Procedures Needed to Ensure Healthy Early Education Environments Figure 2. Policies and Procedures Needed to Ensure Comprehensive Medically Sound Practice for CSSHN Figure 3. Taxonomy of Children with Special School Health Needs Figure 4. Taxonomy of Procedural Risk Figure 5. Taxonomy of Personnel Developing IHP and/or Delivering Training or Information for CSSHN Figure 6. Taxonomy of Personnel Implementing IHP for CSSHN x PREFACE Completion of this work leads me to reflect upon those who have helped me along the way. I am very appreciative of the support of my Pennsylvania MAWA colleagues, who supplied the data for this research. They are a group of extremely hard-working professionals, dedicated to the welfare of the young children they serve…a very special group indeed! I am very grateful to and have utmost respect for my dissertation committee: Drs. Feldman, Lehr, Trovato, and Zigmond. I have learned so much from each of you. You may never understand the positive impact you have had upon me: coaching me, challenging me, building my confidence, forming the professional and person I am today. Dr. Kaczmarek…Louise…my esteemed advisor and friend, you have spent countless hours poring over my research, critiquing, suggesting, and causing me to think critically and logically, in a way that I never have before. The road was very long; how can I ever thank you for standing by me, teaching me, and believing in me every step of the way? And Myles, my dear husband, and my sons, Reed and Ross…you have endured this process with patience, selflessness, and humor. You knew this degree was important to me and understood and supported me, though you had nothing to gain from it personally. I thank you from the bottom of my heart. I appreciate and love you guys…you are the best family anyone could ever have. xi I. INTRODUCTION To participate in the stream of society is the norm for most, a dream for some, and the right of all. And yet, faced with the juxtaposition of finite levels of resources coupled with infinite levels of demand, educational leaders are confronted with difficult decisions. In an effort to make this point salient, four stories about children with special school health needs (CSSHN) are offered. A. Stories of Children with Special School Health Needs: Habeeth, Krista, Tamoyya, and Charlie 1. Habeeth Habeeth is a 39 month old boy whose family recently moved to Pennsylvania from Chandigarh, India. His father is a representative of the Ministry of Tourism for the Government of India. Though he is based in Pittsburgh, the father’s assignment demands that he travel widely throughout the

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