Special health care needs

CHILDREN WITH SPECIAL HEALTH CARE NEEDS... 

Children with special health care needs will require additional considerations during mass casualty or disaster care. These considerations include decontamination procedures following radiation or chemical exposure for children using wheelchairs, ventilators, or oxygen and decontamination procedures for children with gastrostomy tubes, tracheostomy tubes, indwelling bladder catheters, and indwelling central venous catheters. Replacement supplies would be needed once the cutaneous decontamination is completed. Such supplies may not be readily available, so provisions must be made to secure these items or to have comparable clean or sterile supplies on hand. 

Children with Special Health Care Needs in School... 

It is estimated that between 15 and 20% of children in the United States have a significant ongoing need for health care (Newacheck et al., 1998). In order to clearly define the group of children and youth discussed in this paper, the term children with special health care needs as defined by the Federal Bureau of Maternal and Child Health will be used. Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition, and who also require health and related services of a type or amount beyond that required by children generally (American Academy of Pediatrics (aap), 1993). This definition includes children with chronic illness that is defined as a condition that lasts at least 3 months and requires extensive hospitalization or in-home health services (aap, 1993). 

Paradoxically, this high prevalence of children with special health care needs is related to advances in medical science, which have greatly increased survival rates for a number of health conditions. For example, the median survival age for children with cystic fibrosis has more than doubled in the last 3 decades, up fi om 11 years in 1966 to 29 years in 1993 (Cystic Fibrosis Foundation, 1994). Similarly, acute lymphoblastic leukemia (all), a disease that was once almost uniformly fatal, now has an average childhood survival rate of 5 years or more (Mulhern ... 

Friedman, 1990). Moreover, while accidents remain the most common cause of childhood death, more children are surviving them— but often with permanent disabilities and complex medical needs (U.S. Department of Health and Human Services, 1994). Schools around the country are feeling the impact of these trends, as they are faced with more children with special health care needs than ever before. 

In this chapter, we review the physical and mental health issues common to children with special health care needs and discuss how sbhcs and related school-based mental health programs can be instrumental in addressing these needs. Although specific medical conditions in children can be associated with unique stressors and issues, many common features also exist. In this paper, we provide a more general review based on the presumption that the psychosocial needs of children with various medical conditions are more similar than they are different (Rinehart, 1998). 

In addition to ongoing physical challenges, children with special health care needs also have significantly more school problems and psychosocial difficulties than do their healthy peers (Gortmaker et al., 1990 Lavigne Faier-Routman, 1992 Pless, Power, Peckham, 1993). Youth with chronic illness often present with... 

As many as one in eight youth report a limitation in their usual activities because of a special health care need (Newacheck Taylor, 1992). School attendance is one prominent example. One study foimd that youth with special health care needs were three times more likely to spend days in bed and had three times as many days absent from school than other youth (Newacheck et al., 1998). Absence from school obviously interferes with academic performance it also significantly interferes with peer and adult relationships and social development. Indeed, several studies have shown a significant positive relationship between school attendance and positive adjustment in children with special health care needs (Colgrove Huntzinger, 1994 Stein Jessup, 1984 Weitzman, Walker, Gortmaker, 1986). 

Even when children with special health care needs are able to attend school, they often are excluded fixim many activities such as special clubs, student government, and athletics. For some, frank physical limitations adversely affect communication, mobility, and activity level, making sports and extracurricular involvement difficult or impossible. However, some children with special health care needs are excluded from activities by parents, coaches, teachers, and schools only as matter of routine, despite a lack of research to support such exclusion. 

Social isolation and stigmatization by peers are commonly experienced by children with special health care needs in schools (LaGreca, 1990). On a website for children with special health care needs, stigma is a pervasive theme in the children s writings (Fleitas, 1999). For example, an 8-year-old wrote I have cystic fibrosis and sometimes I cough a lot. Here s what happens when I get in line at school. The kids in front of me walk real fast, and the kids behind me walk real slow. So it s sort of like I m all alone. Sadly, teachers and other school staff often miss opportunities to reach out to these youth when they experience such isolation. 

In an era when children are discharged from hospitals in hours and days instead of weeks and months, children often return to school with medical needs that cause understandable tension for many classroom teachers. Teachers may not be fully informed about a student s health problem and may not know how to respond should a health crisis occur in the classroom. In addition, school staff may inappropriately prohibit students from taking needed medication for conditions such as asthma and diabetes. Teachers also may have concerns about medical devices that students need for daily living such as gastric catheters and glucometers. Schools are faced with the need for significant teacher and staff training in order to ensure that the school environment is safe for students with special health care needs. 

In addition to anxiety and poor training in dealing with youth with special health care needs, teachers are often handicapped in their efforts to educate these students. In many cases when children are discharged from hospitals, limited information is given to the school. Without information on past academic and behavioral functioning, and without specific educational plans and administrative support, teachers may quickly feel frustrated or defeated in their efforts to work with these students. 

Given the challenges of successfully integrating students with special health care needs into schools, a critical mass of supportive health and educational staff is necessary. Moreover, past and recent laws require that the health and educational needs of youth with these conditions must be met. But schools may have difficulty in complying with the magnitude of demands imposed by these laws. 

In the most recent reauthorization of Public Law 94-142, the Individuals with Disabilities Education Act (idea), schools are mandated to provide children with chronic illness and other disabling conditions individualized educational and supportive services in the least restrictive educational setting. To qualify for special services under idea, a child must have a disability that is adversely affecting (his/her) educational performance. The disability category that usually applies to children with special health care needs is other health impaired. This classification is defined as having limited strength, vitality or alertness, due to chronic or acute health problems such as a heart condition, tuberculosis, rheumatic fever, nephritis, asthma, sickle cell anemia, hemophilia, epilepsy, lead poisoning, leukemia, or diabetes, which adversely affects a child s educational performance. ... 

Although designed to benefit youth with a wide range of academic difficulties, there are several limitations to placing a child with special health care needs in the special education system. A widespread problem is the lack of resources in schools to adequately address student needs. Schools are often deficient in human and programmatic resources for both educational and health concerns. 

Another significant issue with special education placement is the risk of further stigmatizing youth who already feel stigmatized. Most parents of children with special health care needs do not want them to be singled out or treated differently as a result of their conditions. In some cases, parents may be reluctant to accept services for their children that are genuinely needed. 

Although special education services are certainly warranted and valuable for many children with special health care needs, school-based health centers (sbhcs) offer another mechanism to address the needs of these students. As mentioned, SBHCS now number over 1200 in the United States and have expanded to include a range of preventive, primary care, and mental health services. A common staffing pattern for an sbhc would include a medical assistant, nurse coordinator (often an rn), nurse practitioner or physician assistant, a mental health professional (usually master s-level or doctoral trainee), and a consulting physician. Some centers have additional staff, including health educators, outreach workers, and dentists (Juszcak et al., 1995). 

School-based health centers are uniquely positioned to provide services to students who are most in need. Most sbhcs are established in low-income communities with inadequate health care resources and many unmet health care needs. This is reflected in a 1998-1999 survey of sbhcs nationally two-thirds of the population served by the centers were members of a minority group (National Assembly on School-Based Health Care, 2000). Studies of children with special health care needs reveal that those who face the most serious problems in accessing health care are children who live at or below the federal poverty line, live in single-parent families, are uninsured, are older children and teens, or members of a racial or ethnic minority group, sbhcs are designed to provide easily accessible health care services to this population. 

In the following, we present ideas for school-based programs to better address the health and mental health needs of children and adolescents with special health care needs. Recommendations are built upon studies and articles on sbhcs and expanded school mental health as reviewed earlier. We also draw on studies and articles that have generally discussed interdisciplinary collaboration in pediatric settings (e.g., Drotar, 1995 Roberts, 1995 Schroeder, 1996). 

School-based health centers with esmh can assume an important role in integrating children and youth with special health care needs into the community system of health care. This role is most important for youth who are uninsured. Uninsured children are four times more likely than insured children to have an unmet health need such as a need for medical care, mental health care, and prescriptions (Newacheck Taylor, 1992). Case managers and clinicians in schools... 

Interventions that target a student s entire classroom can also contribute greatly to the adjustment of children with special health care needs. For example, SBHC staff can educate students about a child s illness to reduce the stigma and fear that classmates often convey. Carefully implemented classroom education and support programs have been found to enhance the reintegration of children back into the school after hospitalization (Katz et al., 1992). In addition, simulation exercises that allow classmates to experience an aspect of the child s condition (e.g., ride in a wheelchair, try on a heavy cast) can increase classmate sensitivity toward and admiration for the impaired child. 

One website testimonial illustrates the benefits of this type of classroom intervention When I went back to school, two of the nurses fi om the clinic came with me to explain my illness. They brought some dolls with them so that everyone could understand, and they even showed the kids the needles that I got. They said that leukemia was not contagious, so that the kids would understand they couldn t catch it. The students asked lots of questions, like how did you get leukemia, why are your cheeks so fat and what happened to all of your hair (Fleitas, 1999). Clearly, providing students with a forum for discussing their own fears and others misconceptions about a student s illness minimizes stigma and can facilitate social interaction. Of course, children with special health care needs and their parents need to be included in any planning of educational efforts to inform other students of the nature of their medical condition in order to ensure that privacy is respected (Bowden et al., 1998). 

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