Online Journal of Rural Nursing and Health Care, 1(3) 26 Children with Special Healthcare Needs in the Classroom Jena Clayton Barrett, DSN, RN1 1 Capstone College of Nursing, University of Alabama, jbarrett@nursing.ua.edu Abstract This research involved 335 teachers in a rural area. Their stories of the inclusion of children with special health care needs in the classroom underline the need for healthcare providers to engage in teaching school personnel about issues in child health. The teachers tell stories about their classroom experiences and the medical needs of the children in a rural setting. Laws leading to the inclusion mandate are discussed. There is also a description of the medical diagnoses seen in rural classrooms and a discussion about the issues involved in inclusion. Keywords: rural health, inclusion, children, special health care needs Online Journal of Rural Nursing and Health Care, 1(3) 27 Children with Special Healthcare Needs in the Classroom In 1975, the Supreme Court handed down a decision that began the growth of inclusion. Parents of children with disabilities and their children advocated the need for desegregation. The drive for mainstreaming, the inclusion of children with disabilities in the regular classroom, was based on two emotional foundations. First it represented value of the children, and, second, the offense of the stigma of a special class was removed (Giangreco, 1996). There was little research conducted to ascertain the impact this decision would have on the educational system. Increasing numbers of children with special health care needs are challenging the abilities of our public education system as they attempt to access a free, appropriate public education. The systems often are unprepared for this challenge to its structure. Educators do not have the background to deal with many of the health care needs of the children under their care (Salend, 1999). Rural schools have limited school nurse staffing to handle emergencies or teach about health issues; they lack the resources to educate their teachers about special healthcare. While rural schools have 49% of the nation’s public schools, 41% of its teachers, and 38% of its students, they receive only 22% of federal, state, and local K-12 funding (National Education Association, 1999). Anxiety among teachers is heightened. Current regulations mandate health services for children with special needs be provided in the classroom. Financially and emotionally the rural educational system is stretched. It is not clear whether Congress ever intended or perceived that children with extensive health care needs would seek the public education deemed their right 20 years ago (Rapport, 1996). Online Journal of Rural Nursing and Health Care, 1(3) 28 Often framed as a civil rights issue, inclusion has been furthered by advocacy, legislation, and litigation. Twenty years ago the Education for All Handicapped Children Act (P.L. 94-142) and the Americans with Disabilities Act (ADA) were passed. The 104th Congress reauthorized the Education for All Handicapped Children Act and titled it the Individuals with Disabilities Education Act (IDEA). In 1992 Third Circuit Federal Judge John F. Gerry in Oberti versus Clementon ruled “Inclusion is a right, not a privilege” (Smith, 1997). The changing face of the American classroom now mirrors these laws, laws that should assure children with disabilities a free, appropriate public education in the least restrictive educational settings. While school district central office personnel face legal, financial and administrative issues associated with children with disabilities, teachers face additional challenges (Knight & Wadsworth, 1993). Classroom teachers who previously have had little or no interaction with medical or physical disabilities are being required to assume increased responsibilities by including children with special needs in the regular classroom (Salend, 1999). In rural communities school systems bear the responsibility for implementing Individual Health and Education Plans, funding most of the therapies, and becoming responsible for healthcare to the extent of tracheotomies. The educational authorities are increasingly concerned about the provision of care for these children (Committee on Children with Disabilities, 2000). Healthcare providers in rural communities must become resources for these school system personnel. Sample Following internal review board approval by the University, teachers in rural school systems were contacted about their interest in participating in research about children with Online Journal of Rural Nursing and Health Care, 1(3) 29 special needs. Three hundred and thirty five teachers from two rural county school systems responded and gave informed consent to participate in the research. Focus Groups Teachers met with the researcher Mondays after school for three Mondays. Eleven schools were involved. Focus group sessions were conducted at each school for three weeks. The sessions lasted an average of an hour and a half. The researcher cultivated rapport with the teachers by sharing with them her work as a nurse with children with special needs. The focus groups were unstructured, allowing the teachers to discuss any topic they found pertinent concerning children with special needs in their classroom. Comments from the teachers were transcribed. Findings The focus group sessions revealed that a great many children with special health care needs are currently in rural classrooms (See Table 1). Teachers in the research study shared stories that revealed a treasury of anecdotes concerning children with disabilities and their impact on the classroom. Some teachers found that their contact with children with disabilities was heartwarming and evocative; others felt disheartened and frustrated. Online Journal of Rural Nursing and Health Care, 1(3) 30 Online Journal of Rural Nursing and Health Care, 1(3) 31 Opportunities Arise from Fears The first two stories describe situations where teachers and students are both afraid and uncertain of the unknown. Children with disabilities enter the classroom setting and the effect these children have on everyone is heartrending. A fifty-year-old fourth grade teacher with thirty years of teaching experience tells the first story. It offers a glimpse of a classroom that faced their fears and embraced a new experience. The stories illustrate the opportunities offered by inclusion: A young man had been a pupil of mine in the fall semester. He was an average grade student, but had a very bright personality. He was very popular with his fellow classmates and a budding sportsman. He was late for class on several occasions because he worked the farm with his father and grandfather. In the late autumn his life and the life of my classroom were altered. In the spring, this young man returned to my classroom much changed, yet much the same. An event in early fall had left him paralyzed from the waist down. A tractor had run over him in a farming accident. The young man, once independent and full of spirit came back to our classroom incontinent, unable to walk, and beginning to atrophy from the waist down. Our original reaction was not admirable. We all felt unable to cope with his changed appearance and physical disabilities. What happened next, however, was one of the most remarkable events to occur in my 30 years of teaching, and it brought us a profound sense of reality. Online Journal of Rural Nursing and Health Care, 1(3) 32 The students in my classroom and I began to change our own routines to accommodate this young man's needs. At first, I complained to my husband how much of a disruption to my routine having this child in my class was. A few parents expressed concern over the time their children spent caring for this child's needs. Some students were frightened of the wheelchair. The young man recognized this and began letting his fellow students see the world from his perspective, letting them sit in the chair and use it for mobility. The students identified obstacles in the school which made navigation difficult. They then embarked on projects and worked with the Parent- Teachers Association to make the school more wheelchair accessible. Three times a week a physical therapist came to our school to work with the young man. The students took turns working with the physical therapist and soon learned a great deal about anatomy and body mechanics. Since the young man was incontinent, I thought a lesson on spinal cord innervation would help the students better understand the situation. The students worked up a teaching unit and presented their newfound knowledge to other classes. The students said they had a lot to learn from this young man. So did I. What we gained from this experience was invaluable. He taught us more about life than any textbook. The young student has gone to another grade and is doing well. The opportunities gained for all of us will forever change our lives. This child offered us a chance to understand. Online Journal of Rural Nursing and Health Care, 1(3) 33 A third grade teacher in her thirties with ten years of teaching experience tells the second story: I teach third grade. Last fall a young girl with cerebral palsy was placed in my class. I wasn’t even sure what cerebral palsy was. We do not have a school health nurse, so I did a lot of research myself. The class and I were unsure about how to treat this stranger. She had been attending a special education center and was equally unsure about us. The child could not walk and was confined to a wheelchair. I thought she was incontinent. Her communication was difficult to understand. The month of September was tough on all of us. As October wore on, the young girl began to gain a cadre of friends. The students were eager to be the one who got to push her wheelchair. I saw the girl begin to smile. Then we all began to smile. The young girl made close friends with several classmates and they began to interpret for her. One of the special education teachers brought a communication board for us to use. It had pictures and words on it that the young girl could point to. By Thanksgiving I could communicate very well with her. She could tell me when she had to go to the bathroom for her stools so that I could take her. Her bladder control was a bit more difficult. The entire class began to plan around her routine and needs. We were not doing the same things the other third graders were doing, but we were learning many different and important things. The young girl did not return after Christmas break. She was missed by all of us. We called about her and were informed that she was ill and could not come to class. The students immediately volunteered to take her lessons and visit her. The students took Online Journal of Rural Nursing and Health Care, 1(3) 34 turns going with me once a week and visiting. She was happy to see us. We fell into our old routine at school and realized how much we missed her. At a PTA meeting that spring, several parents spoke about how much their child had learned from having a friend with a disability. It was a lesson I could not teach. This young girl taught us much about communication, body functions, patience, and love. In early summer, the young girl died. We will always remember and miss her. Frustrations The next two stories clearly exemplify the frustrations teachers are experiencing. The teachers are unprepared for the health and behavioral problems they face as a result of inclusion. The need for a school health nurse becomes evident. A teacher in her thirties with ten years teaching experience relates the first story: In my first-grade classroom I have a 7-year-old who functions like a 3-year-old. This situation is impossible. The other students and I are at wits end. I no longer know how to help this child. I no longer have the time to help the other students and I am not sure where I fit in this environment. I want to teach. I consider myself a good teacher, but what am I to do with this child in this environment? The child throws violent temper tantrums, wears diapers, and is absolutely incapable of being left alone. I must take my lunch break and feed this child. My breaks consist of cleaning this child. My every moment is committed to this one child. What about the other 20 children in my class? They try to help me, but I do not see it their responsibility to diaper and control this one child. To complicate things, this child had been diagnosed with attention deficit disorder and I am supposed to deal with him. I’m not even sure about the medicines this child Online Journal of Rural Nursing and Health Care, 1(3) 35 takes for this. This is an impossible situation. His parents tell me he will progress very little beyond this point. I may find another profession. No one helps us. This is not teaching. A story told by a teacher in her forties who had been teaching second grade for two years follows: This is the first year I have had a child that has health and behavior problems diagnosed as linked to a mother who was on crack cocaine when she was pregnant and when she delivered. The child is in my second-grade class, but I think he belongs somewhere other than in the second grade or in this school. The eight-year-old is profoundly mentally retarded and has moments when his tantrums scare the other children and me. The child had not been in any special education class but this year was evaluated and placed in my room. I have no idea why. He has seizures, which are frightening. He will suddenly fall to the floor, sometimes hitting his head, shake all over, vomit, and soil himself. When this occurs my other students quickly go to the other side of the room. I have one student designated to go and get the principal, but he doesn't know what to do either, and, by the time he gets here, the seizure is usually over. We try to call his mother but can never find her. No one has ever taught me how to handle these things. I dread coming to work now. Lack of Healthcare Preparation The last three stories reflect the lack of preparation teachers have in working with children with special healthcare needs. More than anything else, the stories reflect the need of Online Journal of Rural Nursing and Health Care, 1(3) 36 school health nurses. The first of these stories is told by a third grade, sixty-year old teacher with forty years of teaching experience: Can you help me? This year a child with a shunt entered my classroom. What is a shunt? Should I do anything for it? The child's parents ask me to let them know if I think it is malfunctioning. Malfunctioning? How do I know and what do I do if it is? This is a sweet, quiet child who seems to be doing well with her class work but has a profound learning disability. Should I make exceptions for her? I have noticed a bulge on the side of her head and a funny line down her neck. She tells me this is normal. I would like to know more about why she has this; the students in the class are eager to learn more about what is going on. I have asked the parents to help. They tell me that it is my job . . . is it? The next story is told by a twenty year-old new to teaching: I have a child in my classroom with severe asthma. The young girl's mother told me about it at the beginning of school, but that is all she said. She then handed me this "tube and can like thing". I asked her to tell me what it was for. She said the young girl, a third grader, would know what to do. I hoped so, because we are a long way from any kind of emergency response people. On the third week of class the young girl had an asthma attack. She was on the playground and began making terrible breathing sounds. I remembered the "thing" her mother had given me and ran to the classroom to get it. I took it to the playground and gave it to the girl, but she was too upset to do anything. Fortunately, a fellow teacher had a daughter who had asthma and understood how to use an inhaler. She took it from me and used it with the child, whose breathing got better. I Online Journal of Rural Nursing and Health Care, 1(3) 37 called her mother. What if that other teacher had not been there or had not known what to do? This story came from a first grade teacher in her forties with ten years of teaching experience: I have a child with a severe peanut allergy. I was concerned and took a course at a local Emergency Medical Training center for learning how to do mouth-to-mouth, but I understand that if the child "closes up" there may be nothing I can do. They tell me that it will take almost five minutes for the EMTs to respond if I call 911. I need more information on foods and substances containing peanuts and peanut oil. The student and I have made a pact to learn together. I am amazed at how much a 6-year-old is capable of learning and teaching other people. Discussion These stories reflect both the positive and negative aspects of inclusion. The impact of inclusion on the child with special needs, on the teacher, and on the other children in the classroom is evident. The first two stories illustrate the positive contributions children with special needs in the regular classroom have to offer. The students and teachers were at first wary of their differences then found new opportunities to grow. The second group of stories describes the fear and exasperation teachers face as a result of inclusion. They also evidence the lack of preparation teachers have in the area of children with special needs. The teachers were sometimes unaware of the children’s diagnosis, what it meant, how to implement interventions, what the medications were. Online Journal of Rural Nursing and Health Care, 1(3) 38 Teacher job satisfaction has been tied to teacher self-confidence and feelings of professional competence (Salend, 1999; Tice, 1997). Teachers who have little or no knowledge of the health needs of children with disabilities are now being asked to assume responsibility for areas previously the domain of health care professionals. Teachers are expressing anxiety, dismay, fear and resistance (Tice, 1997; Williams, 1990). With the increased numbers of children with chronic illness entering the school environment come many issues and problems (Committee on Children with Disabilities, 2000). There is an outcry for teacher training in health care—not just for children with disabilities, but for all children. Special health care needs predispose a child to serious injury and illness. Teachers are on the frontline in preventing illness and injury (Emergency Medical Services for Children, 1993). Childhood accidents are the leading cause of death and disability for children. Accidents can occur to any of the children in the school, not just the children with special needs (Lewis, 1999). An examination of curricula required for education majors reveals there are no required courses in CPR, health care or first aid. Only the state of California requires education majors to complete a course in health education including training in nutrition, effects of alcohol, drugs, and tobacco, and CPR certification. California is one, if the only, state to have an education major credentialing requirement that includes health education (Lovado & Rybar, 1995). In the classroom teachers dealt with conditions ranging from attention deficit disorder and children born to crack cocaine mothers to children with shunts, asthma, and allergies. Teachers were unprepared to handle situations that did or might arise. The need for a school health nurse is evident. Since rural school systems have one nurse to an entire county, or no nurse at all, the implications are clear—teachers must form the first line of intervention for Online Journal of Rural Nursing and Health Care, 1(3) 39 emergencies and health maintenance for all children, not just those with special needs. The emergency response time for some of these rural schools was a long as 20 minutes. Teachers said that this concerned them, but also made them cognizant of the fact that they were the emergency response for these children. The teachers were willing to learn, they just needed the resources to do so. Healthcare professionals in rural areas are the obvious answer for these teachers’ cry for help. The nurse in rural communities has a rare opportunity to engage in interdisciplinary work. Implications Students are exiting education curricula without any healthcare knowledge. The education of students in education majors and the education of new teachers is certainly pertinent. With the federal mandate for inclusion should come a federal mandate for educator credentialing in health management knowledge …at least in CPR. By learning CPR, the teachers have more confidence in emergency situations. Even if CPR is not needed, having a background in emergency procedure will give the teacher a better sense of control. Rural educators are in particular need of this because of their distance from response personnel. The down side of mandating CPR, however, is that CPR certification does not begin to address the inclusion issue and its impact on the classroom. Legislatures, by mandating CPR certification, may take a "cheap shot" and feel comfortable that they have done a great deal to solve the safety hazards of inclusion. Teachers need to be better prepared in the area of special health care needs. Undergraduate and graduate programs in education need to begin to incorporate health care in the curriculum. Both education and nursing must also educate their professionals on interdisciplinary work (Passerelli, 1997). Healthcare professionals must become the providers of Online Journal of Rural Nursing and Health Care, 1(3) 40 education for our educators. Nurses can work with schools and teach healthcare (first aid, disabilities seen in the classroom, etc.). This opportunity is there with existing teachers and for teachers beginning their teaching internships. Nurses must become advocates for the teacher and the child with special needs by becoming active in policy issues and legislature. As a nurse in a rural community, the opportunity is there to ease teacher anxiety and make school a safe haven. By implementing the above recommendations, teacher anxiety will decrease, and their job performance increase. Children's healthcare will improve when teachers become knowledgeable of health care management, and children with special health care needs will be in a safer environment. 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