This qualitative study examined the beliefs and experiences of special education teachers about inclusive education for secondary age students with severe disabilities and co-existing complex health care needs. Participants were 11 middle and high school special education teachers who collectively case managed 18 students. Data were collected via demographic questionnaires and online interviews, and analyzed using an inductive coding approach. Findings portray the roles of personnel who provide student supports, the types of supports personnel and students require to be successful, benefits experienced by students, and barriers to including students.
Many students with severe disabilities (SD) have severe intellectual disability (ID) and are typically eligible for special education under the Individuals with Disabilities Education Act (IDEA, 2004) categories of autism, ID, multiple disabilities, and deaf-blindness. A longstanding priority in the field of special education is educating students with SD in inclusive settings (e.g., general education classrooms, extra-curricular activities, the community; Agran, Brown, Hughes, Quirk, & Ryndak, 2014; Brown, McDonnell & Snell, 2016). Research demonstrates that inclusive educational practices promote social membership (Carter & Hughes, 2005), academic achievement (Kurth & Mastergeorge, 2012), and improved post-school outcomes (Ryndak, Ward, Alper, Montgomery, & Storch, 2010) for students with SD. Inclusive education is also a philosophy grounded in civil rights (Agran et al., 2014). A primary goal of inclusive education is to ensure that students with SD have equitable access to chronologically age-appropriate school experiences, alongside their peers without disabilities, through the provision of appropriate supports and services to meet individualized learning goals (Doyle & Giangreco, 2013). Additionally, secondary age students benefit from inclusive education by learning skills that will enable them to function in the community and workplace, as well as, develop and maintain social relationships as adults (Ryndak et al., 2010).
Despite a philosophical and research-based foundation for inclusive education, students with SD are less likely than their counterparts with disabilities to be educated in general education classrooms. According to the U. S. Department of Education (2016), a large percentage of students identified as having SD spend less than 40% of their day inside the general education classroom (i.e., students served under the categories of ID, 49.2%; multiple disabilities, 46.0%; deaf-blindness, 34.4%; and autism, 32.8%). In contrast, only 4.3% of students with speech or language impairments and 5.8% of students with specific learning disabilities experience a similar placement. Data for students with SD who have co-existing complex health care needs (CHCN) are not available; these students may present unique challenges to ensuring their safe care in inclusive settings (Lehr, 2014).
In the past, students with CHCN were referred to as medically fragile or medical technology dependent. The phrase students with CHCN is now used because it exemplifies person-first language and the intricate nature of health supports necessary to effectively support this population in their daily lives (Cohen et al., 2011; Lehr & Greene, 2002). Students with CHCN require medical technology (e.g., mechanical ventilators), skilled health monitoring (e.g., oxygen monitoring), and low-incidence specialized health care procedures (e.g., tube feedings) to attend school (Müller, 2005; Virginia Departments of Education and Health, 1995). It is not uncommon for children or youth with CHCN to also have SD (Elias, Murphy, & Council on Children with Disabilities, 2012).
Although historically students with SD and CHCN have experienced institutionalization and early mortality (Lehr, 2014), several developments have significantly improved public school attendance. These include technological advancements in medicine (e.g., portability of medical technologies), health policy (see U.S. Department of Health and Human Services, 2014), and special education law and policy (IDEA, 2004; Department of Education, State of Hawaii v. Katherine D., 1983). Despite these advances, students with SD and CHCN continue to experience limited access to inclusive education in public school settings (Ballard & Dymond, 2016).
To our knowledge, only one study has investigated inclusive education for secondary age students with SD and CHCN. Ballard and Dymond (2016) examined one student's access to inclusive education following a non-traumatic brain injury that resulted in acquired SD and CHCN. Findings included nominal student access to inclusive education due to inadequate individualized education program (IEP) team planning; and limited peer interactions due to the simultaneous presence of a 1:1 nurse and 1:1 paraprofessional.
Prior research on educating students with CHCN has centered on key issues related to their initial entry into public school settings. The impetuous for this research lies in the relatively recent possibility for students with CHCN to attend public schools (e.g., advancements in health technology, legal mandates). In general, existing research describes the roles of school personnel, necessary supports for school personnel and students, and benefits and barriers to educating students with CHCN in public school settings. Despite the focus of prior research on initial entry into public school settings, findings from these studies provide a preliminary understanding of issues relevant to inclusive education for secondary age students with SD and CHCN.
Studies that have examined educating students with CHCN in public schools identify the need for well-defined provider roles. A multidisciplinary and collaborative IEP team is essential to plan and implement safe educational programs for students with CHCN (Palfrey et al., 1992; Rehm, 2002). The IEP team should include educational, health, and community providers; and the student and his or her family. Clear delineation of roles, as well as team member understanding of and respect for each other's roles, promotes effective service delivery (Anderson, 2009; Rehm, 2002). An educational coordinator (special education teacher) and a health coordinator (school nurse) are needed to oversee the day-to-day delivery of education and health services, respectively (Palfrey et al., 1992). Frequent and open communication across all IEP team members (e.g., reporting a change in health status) is critical, enabling key school personnel (i.e., special education teachers, school nurses) to make daily adjustments to students' schedules and care regimens to promote their safety at school (Anderson, 2009; Palfrey et al., 1992; Raymond, 2009).
In order for IEP team members to perform their respective roles, several key supports need to be in place, foremost of which is an individualized health care plan (IHCP). The IEP team collaborates to develop the IHCP, which is attached to the student's IEP. The IHCP serves as a central roadmap for school personnel to meet a student's routine and emergency health care needs (Palfrey et al., 1992; Raymond, 2009). A critical support for school personnel is training on the IHCP, including (but not limited to) the student's medical diagnosis, medical equipment, and health supervision needs. Research indicates that initial and ongoing training benefits a broad range of school personnel (e.g., teachers, nurses and other related services personnel, paraprofessionals, bus drivers, administrators) by reducing fear and anxiety and by building capacity and willingness to effectively support this population in public school settings (Anderson, 2009; Esperat, Moss, Roberts, Kerr, & Green, 1999; Jones, Clatterbuck, Marquis, Turnbull, & Moberly, 1996; Palfrey et al., 1992). Additionally, providing information on a student's health care conditions to peers without disabilities promotes positive peer interactions (Rehm & Bradley, 2006; Raymond, 2009).
Only one investigation examined the benefits of educating students with CHCN in public school settings. Rehm and Rohr (2002) found teachers believed that when students with CHCN are exposed to peers without disabilities they experience improved educational achievement and a more normalized school experience, and students without disabilities achieve greater awareness and appreciation of diversity. In contrast, several studies have identified barriers to educating students with CHCN in public schools. A common and major barrier is lack of training on student health care conditions to ensure the safety of students (Esperat et al., 1999; Rehm, 2002). A shortage of school nurses has been found to further complicate this issue (Anderson, 2009; Esperat et al., 1999; Rehm, 2002). Nursing shortages have been associated with an increased likelihood of placement in self-contained classrooms away from students' neighborhood schools (Rehm & Rohr, 2002), which in turn results in limited access to peers without disabilities (Diehl, Moffit, & Wade, 1991; Rehm & Bradley, 2006).
Extending the current research on educating students with CHCN in public school settings, specific to roles, supports, benefits, and barriers, to secondary age students with both SD and CHCN, may provide a greater understanding of the current educational issues and practices for this population specific to inclusive education. Special education teachers can provide insight into this problem. They function as day-to-day coordinators of service delivery in the implementation of inclusive education, and work closely with school nurses to ensure the implementation of IHCPs across school contexts that include general education classrooms, extracurricular activities, and the community. Additionally, other school personnel frequently look towards special education teachers for direction and support when implementing inclusive educational practices (Ward & Ward, 2014).
The significance of addressing secondary age students is two-fold. The primary reason is that students with SD and CHCN are living longer (Turchi & Mann, 2012) and some middle and high schools may be encountering this population for the first time (Lehr, 2014). Secondly, inclusive education has been found to improve post-school outcomes for individuals with SD (Ryndak et al., 2010) and it is reasonable to assume that individuals with SD and coexisting CHCN will similarly benefit. Given the limited data available on inclusive education for this population, this study sought to answer the following research question:
What are the perceptions and experiences of middle and high school special education teachers regarding the roles, supports, benefits, and barriers related to including students with SD and CHCN in school and community settings?
An in-depth understanding of the personal experiences and perspectives of participants was essential to answering this investigation's research question; therefore, a qualitative design was selected to achieve this goal (Patton, 2015).
Participants were middle and high school special education teachers of students with CHCN in the state of Illinois. Two methods were used to purposefully recruit participants. First, an email was sent to members of the Illinois Association of School Nurses (IASN; N = 738) requesting them to forward a recruitment email to middle and high school special education teachers of students with CHCN. IASN members were selected to assist with recruitment because school nurses are knowledgeable about students with CHCN and are uniquely qualified to identify teachers who educate these students. Second, faculty members from the special education teacher preparation program within the university where the researchers work were asked to nominate teachers that met study criteria. Faculty members were selected due to their knowledge of positions held by graduates throughout the state. The researchers sent nominated special education teachers a recruitment email directly.
Twenty special education teachers expressed interest in the study and were screened by telephone to determine eligibility. Criteria for participation included: (a) holding a valid Illinois special education teaching credential, (b) teaching at a public middle or high school that also served students without disabilities, and (c) having a caseload that included at least one student with SD and CHCN who was not on homebound instruction. SD was defined as qualifying for special education services under one or more of the following categories: (a) autism, (b) ID, (c) multiple disabilities, and (d) other health impairment; as well as, eligibility for the Illinois Alternate Achievement Assessment. CHCN was evaluated using a framework developed by the Virginia Departments of Education and Health (1995). This framework categorizes three levels of CHCN: (a) conditions requiring continuous specialized health care procedures, (b) conditions requiring intermittent specialized health care procedures, and (c) conditions with potential for medical crisis that require specialized services on an episodic basis. Students who matched any of the three levels of care described in the framework were determined eligible.
Eleven special education teachers met criteria and agreed to participate in the study (see Table 1). Participants included two males and nine females with a mean of 13 years teaching experience (range 4 - 33) and a mean of six years of experience teaching students with SD and CHCN (range 2 - 16). Nine participants taught high school (grades 9 - 12) and two taught middle school (grades 6 - 8). They reported a mean caseload size of 9 students (range 5 – 15) that included one to three students with SD and CHCN. Seven participants were employed in suburban schools, three in rural schools, and one in an urban school. School populations ranged from 460 to 4,000.
Participants reported a total of 18 students on their caseload with SD and CHCN (see Table 2). The most common primary eligibility category for students was multiple disabilities (n = 12), and the most common secondary eligibility category (when applicable) was other health impairment (n = 8). Participants indicated that students required a range of specialized health care procedures and one-third relied on medical technology. The amount of time students were included with peers ranged from 0 to 200 min. Common settings for inclusion were elective courses (e.g., art, music, drama), and to a lesser extent, the community.
An interview guide was developed based on a review of the literature and consisted of 16 semi-structured, open-ended questions. The first three questions were designed to establish rapport with the participants and better understand their experiences with educating students with SD and CHCN with their non-disabled peers. To ensure a shared understanding of the terms “inclusion” and “inclusive education”, participants were provided with the following definition specific to the purpose of this study: “students with disabilities participating in school or community settings and activities with their non-disabled peers, part-time or full-time, outside of the special education classroom.” The remaining interview questions focused on roles, supports, benefits, and barriers to inclusive education for this population (see Table 3). The interview guide was piloted with three secondary special education teachers who each had over ten years of experience working with students with SD and CHCN. Minor changes were made to clarify the wording of four questions. An expert in qualitative methods and special education then examined the interview guide and verified that the questions aligned to the goal of this investigation.
Interviews were conducted using synchronous internet-based audio/video teleconference shareware (e.g., Skype), which eliminated geographic challenges to collecting data while retaining the benefits of face-to-face interviews (Hanna, 2012). During the interview, teachers were encouraged to answer questions based on specific student needs, and to share related stories, experiences, feelings, and thoughts. All interviews were conducted by the first author. Interviews were audio recorded and lasted an average of 60-min. (range 45-to-75 min.).
Immediately after each interview, a post-interview review (Patton, 2015) was conducted which consisted of rereading and editing interview notes, reflecting on potential biases, and recording preliminary interpretations of the data in a reflective journal. Audio recordings were transcribed verbatim resulting in a total of 240 pages of transcribed data across the 11 interviews. Data were analyzed using an inductive approach (Saldaña, 2013). Transcripts were coded one-by-one and line-by-line in NVIVO 10. An iterative process involving multiple re-readings of the data was used to refine, rename, or collapse codes for a total of 152 codes (Miles, Huberman, & Saldana, 2014). Following the initial coding of all data, codes were sorted into four predetermined categories (benefits, roles, supports, and barriers) aligned with this investigation's research question. Sixty-two codes did not fit into these categories (i.e., did not answer the research question); therefore, no further analysis of these data occurred. The remaining 90 codes were then organized into visual matrices to identify themes across focus codes in each category (Miles et al., 2014). During the coding process, a master list of code names and definitions were compiled into a codebook and updated throughout data analysis (Saldaña, 2013).
The researchers worked collaboratively throughout the data analysis process. The first author served as the primary coder and codebook editor, and developed the initial visual matrices and preliminary themes. The second author functioned as an examiner and auditor at each stage of data analysis, providing possible alternative interpretations of the data to facilitate an iterative examination and revision of initial and focused codes, and themes (Saldaña, 2013). The researchers met face-to-face 3-4 times at each stage of analysis and engaged in a dialogic process. Discussion focused on critically examining codes and themes to ensure they were a good fit for the data. Discussion continued until both researchers were in 100% agreement.
Rich data collection, member checking, researcher reflexivity, and researcher collaboration were key steps taken to establish the trustworthiness of the procedures and findings (Brantlinger, Jimenez, Klingner, Pugach, & Richardson, 2005; Patton, 2015; Saldaña, 2013). Rich data collection focused on gathering in-depth participant accounts, including lived experiences that explained or informed the beliefs participants shared (Patton, 2015). Member checking occurred via email. Each participant was sent (a) a one-page bulleted list of key points from the interview and preliminary interpretations of the data, and (b) a complete interview transcript. All participants confirmed accuracy of the materials. The researchers engaged in ongoing reflexive dialogue in person to critically evaluate potential biases and work to formulate interpretations of the data that represented the authentic beliefs and accounts of participants. The first author also maintained a journal throughout the duration of the study to further promote awareness of potentially subjective interpretations of the data. Finally, researcher collaboration took place in the form of shared decision-making on the study design, data analysis, and findings.
Special education teachers' perceptions and experiences with educating students with SD and CHCN in inclusive school and community settings are described. Findings portray the roles of personnel who provide student supports, the types of supports personnel and students require to be successful, benefits experienced by students, and barriers to including students.
Three themes emerged related to the roles of personnel who support students in inclusive school and community settings. These were ensuring student safety and building trust, collaborating to balance health care needs, and advocating for inclusion.
Ensuring student safety and building trust
All participants described personally ensuring students' safety across school and community environments as a vital ethical and professional responsibility. This involved providing copies of IHCPs and emergency protocols to general education teachers as well as ensuring the school nurse had trained relevant school personnel (e.g., paraprofessionals) on students' CHCN. While participants acknowledged school nurses as the expert in health matters, they also viewed themselves as key to ensuring school personnel felt safe around students. They identified providing health information and establishing trust with general educators as critical to inclusive education for this population. One participant explained, “When you have students with conditions that can be scary if the general education teachers trust you and understand there is a plan in place then they are more comfortable having you and the student in their classroom.” More than half of the participants indicated it was important to also help parents feel comfortable with their son or daughter spending time in general education classrooms or in the community. They felt parents frequently perceive special education classrooms as safer than inclusive environments and therefore sought to reassure parents of the safety protocols in place to keep their child safe in inclusive settings.
Collaborating to balance health care needs
The importance of working closely with school nurses and parents to schedule inclusive education around specialized health care procedures and acute health needs was a topic that frequently arose. Participants emphasized this endeavor as ongoing and sometimes unpredictable. Specialized health care procedures were frequently time specific and performed in the special education classroom or the nurse's office for student safety and privacy reasons, except for a minority of students who received gastrostomy (i.e., G-tube) feedings in the school cafeteria or community. In addition, participants reported communicating regularly with parents to garner day-to-day information about students' health status to modify students' schedules. For example, parent-reported seizure activity might make community-based instruction “too risky,” or the student may be too fatigued to travel to general education classes. Participants described collaborating with school nurses and parents as essential to day-to-day or moment-to-moment decision-making on when students could safely access inclusive education.
Advocating for inclusion
A necessary and important role involved advocating for inclusion. One participant passionately stated, “I am very determined to continue to educate staff and peers that these are just kids that want to go to school like anyone else and be a part of their school.” They described their role as involving a mixture of relationship building, education, and negotiation that was a never-ending endeavor. As another participant aptly explained “Inclusive education cannot be forced. We have to be the bridge between general education teachers and the administration to make inclusion possible.”
Four themes emerged related to supports personnel and students require to be successful in inclusive school and community settings. These were developing self-efficacy, positive school climate, desired supports, and alternative approaches.
All participants described the importance of developing self-efficacy to safely support students with SD and CHCN across school and community environments. School nurses were viewed as vital to providing essential training, directly addressing health emergencies, and helping teachers personally cope with emotional difficulties associated with students' acute or degenerative health conditions and even deaths. The majority of participants also felt school nurses were supportive of inclusive education for students whose health care needs were either stable or variable. One participant captured this sentiment by commenting, “I think our school nurse really understood the importance of inclusion for quality of life reasons.” Participants also reported extending the supports they received from school nurses to empower general education teachers. They believed general educators were apprehensive and even afraid to have students with SD and CHCN in their classroom and needed reassurance to work through those feelings.
Positive school climate
A positive school climate was identified as essential to inclusive education for students with SD and CHCN. Participants defined a positive school climate as welcoming general education teachers, invested peers, and supportive administration. They emphasized the importance of building relationships with general educators to facilitate a climate of acceptance; however, general education teachers had to be naturally willing to accommodate students' frequent absences due to students' health issues (e.g., hospitalizations). Participants also believed peers without disabilities had the potential to foster inclusivity and safety for students with SD and CHCN, as evidenced by the following anecdote:
The student had a seizure and her assistant wasn't standing right next to her, so the peer next to her grabbed her so she wouldn't fall. The peers are very protective of her. If she's gone, they ask if she is ok.
Participants spoke at length about supports they wished were in place to support inclusive education. In particular, they wanted dialogue among school stakeholders (e.g., general education teachers, administrators, parents) on how to realize inclusive education for all students. Some hoped for a mission statement on inclusive education, while some simply hoped awareness would foster respect and acceptance of students with SD and CHCN. One participant mused, “If only they were seen through a different lens, like every other student with the potential to learn and live a happy, productive life.” A commonly shared sentiment was that the school principal, as a leader, sets the tone in the school. Participants wanted school principals to take the time to get to know their students and program needs and to model for other teachers how to equitably interact with themselves and their students. They felt these simple steps may promote their students' valued membership in the school community.
All but one participant discussed the usefulness of alternative approaches when their advocacy efforts fell short, or when health-related constraints (e.g., scheduling, staffing) made inclusive education difficult to access for their students. These approaches were (a) disability specific programs (i.e. Best Buddies and Special Olympics); (b) classroom enterprises (e.g., running a snack cart); (c) campaigns (e.g., Spread the Word to End the Word); (d) reverse mainstreaming (e.g., peers volunteering in the special education classroom); and (e) visiting (e.g., joining a general education classroom for a special event). Although participants recognized these alternative approaches were not congruent with inclusive education, they perceived them as feasible and convenient ways to promote social interactions between students with SD and CHCN and peers without disabilities.
Three themes emerged regarding the benefits of inclusion for students. These were social communication development, student engagement, and diversity awareness.
Social communication development
Participants overwhelmingly described improvements in social communication skills as a key benefit of inclusive education for students with SD and CHCN. Commonly described improvements were higher rates of independently initiating or responding to social interactions with peers. This included the replacement of inappropriate behaviors (e.g., grabbing to gain attention) with appropriate social behaviors (e.g., waving “hi”). More than half of the participants also indicated personal satisfaction that their students appeared more motivated to use augmentative and alternative communication (AAC) systems. They attributed students' increased motivation to use their AAC systems to increased opportunities to communicate with peers without disabilities in inclusive settings.
A majority of participants identified higher levels of student engagement in general education classrooms compared to special education classrooms. One participant animatedly shared:
She was more alert and responding more! Her responses were specific to what was going on. In my class, sometimes she makes a noise but it doesn't seem to be in response to what is going on in the classroom.
Additionally, participants felt that students who appeared to “struggle” with lethargy related to their medical conditions were more likely to stay awake for the duration of a general education class period or community activity. They also believed students exhibited behaviors indicative of looking forward to participation in inclusive settings. Some examples provided were students smiling when tapping a visual schedule icon for a general education class or a community setting, and “lighting up” while transitioning to the general education classroom or community.
An additional benefit of inclusive education centered on peers without disabilities. Participants believed peers without disabilities benefited by getting to know students with SD and CHCN, and subsequently developing a greater appreciation of diversity. One participant explained, “Inclusive education helps students without disabilities understand that although people with health disabilities are different, they are just as capable in many ways. They are not fragile or breakable. They just have different health needs.” Participants who shared this belief expressed hope that peers without disabilities can foster a more inclusive school community, and in the future, be instrumental in building a more inclusive society.
Participants spoke in greater length and depth about barriers, as compared to other categories of findings. Three themes emerged including attitudinal barriers, health care challenges, and administrative issues.
Attitudinal barriers were described as the primary challenge to inclusion. Participants expressed concern and frustration that many general education teachers, in particular veteran teachers and teachers who taught core academic courses, were unwelcoming to themselves or their students with SD and CHCN. Although they talked about the importance of collaborating with general education teachers to overcome attitudinal barriers, approximately half made comments to the effect “you cannot force collaboration.” Several participants recounted stories of attempting to include students with SD and CHCN in classes taught by general education teachers perceived as unwelcoming, resulting in physical placement only and not acceptance as part of the classroom community. One participant lamented:
Either people are afraid to work with them or nervous about it. It takes a lot of reassurance and a lot of training, but some of them will flat out refuse based on the seriousness and sometimes unpredictability of the medical issues.
Health care challenges
Health care challenges were the second most common barrier reported. Challenges commonly related to student absences, fluctuating or unpredictable medical needs, and gradually declining health. Absences were a concern because students fell behind in the curriculum quickly. Participants particularly emphasized fluctuating and changing medical needs as problematic, requiring on the spot decision-making about whether the student was well enough to attend general education classes or travel in the community.
There are times when inclusion is exhausting. Just going from class to class is in itself a task at times. Sometimes you have to take it day by day and see what the student is physically able to do that day.
The distance between general education classes and the school nurse's office, particularly on larger high school campuses, represented another significant barrier. Participants worried about the ability to reach the nurse promptly in the event of an emergency. Additionally, students who required 1:1 nursing supports to participate in general education classrooms, extracurricular activities, and the community were frequently unable to do so because no nurses were available.
Many participants expressed worry about acute medical emergencies their students had experienced at school in the past and were understandably reticent to consider inclusive contexts that were not in direct proximity of a school nurse unless 1:1 nursing supports were available. Finally, several participants expressed the need for more time in IEP meetings to address students' health care needs. As one participant emphasized:
There is not enough time for just the basic everyday nuts and bolts of what we need to do to be able to help this child be safe medically at school, let alone in general education classrooms and the community.
School administration appeared to be a substantial source of frustration for participants. Specifically, participants believed their administration did not understand or support the need for health training, and were unwilling to allocate adequate time for school nurses to train school personnel on students' IHCPs. They also felt their administration would not hire sufficient school nurses and 1:1 nurses, or pay for substitute nurses when nurses were absent. Nursing shortages frequently resulted in nurses called away to address health emergencies in other programs and schools. Consequently, students who required 1:1 nursing to participate in general education classes, extra-curricular activities, and the community were frequently unable to attend due to nursing shortages. Even when students did not require a 1:1 nurse, several participants reported that their school required a nurse to be present when students with SD and CHCN participated in the community. As a result, they often had to leave these students behind at school or rely on parents to accompanying students in the community.
Another barrier reported by half of the participants was that their administration required them to teach core content subjects during designated periods in their self-contained special education classroom. These participants expressed great difficulty carving out time between core content instruction and specialized health care procedures to schedule opportunities for students to learn in inclusive settings.
This investigation examined special education teachers' perceptions about and experiences with inclusive education for secondary age students with SD and CHCN specific to roles, supports, benefits, and barriers. The most salient beliefs expressed by participants focused on the safety of students in inclusive settings. Ensuring the training, competency, and comfort of school personnel (including themselves) was intrinsic to this goal. While participants expressed enthusiasm over the benefits they attributed to inclusive education for students with SD and CHCN, they also encountered substantial difficulties around attitudinal, health care, and administrative barriers.
Under IDEA (2004), students with SD and CHCN are entitled to school health services and school nurse services to receive a free and appropriate public education (FAPE). Without these health services, potentially life-threatening circumstances may occur (Heller, Forney, Alberto, Best, & Schwartzman, 2009). The safety of students with SD and CHCN in any educational setting is the utmost priority.
A disconcerting finding in this study was that a shortage of school nurses or health-trained personnel frequently prohibited students from accessing inclusive education. As found in prior studies, the lack of trained personnel resulted in students experiencing more restrictive educational programming and decreased access to peers without disabilities (Diehl et al., 1991; Rehm & Bradley, 2006; Rehm & Rohr, 2002).
Although IDEA mandates health services necessary for students to receive FAPE, IDEA does not mandate or regulate IHCPs which are under the purview of nursing practice. Instead, each state has a Nurse Practice Act that specifies regulations for developing IHCPs. In addition, the American Nursing Association (ANA) and the National Association of School Nurses (NASN) provide additional guidance regarding the delegation of safe care (National Association of School Nurses [NASN], 2016). Unfortunately, there is a national shortage of certified school nurses, and school nurses frequently have large caseload sizes across multiple school sites (Foustoukos et al., 2014; Spriggle, 2009). This is highly problematic as school nurses play a pivotal role in training school personnel and providing direct services that promote the health, well-being, and education of students (National Association of School Nurses [NASN], 2016; American Academy of Pediatrics, 2016).
Despite these challenges, the findings of this study suggest that special education teachers who collaborate with school nurses benefit from their expertise, and feel empowered to advocate for inclusive education for students with SD and CHCN. In contrast, other studies have shown that school nurses are underutilized and undervalued (Kruger, Radjenovic, Toker, & Comeaux, 2009; Pufpaff, Mcintosh, Thomas, Elam, & Irwin, 2015). Although participants expressed significant concerns regarding nursing shortages and inadequate health training, they overwhelmingly viewed school nurses as supportive of inclusive education and instrumental to their professional self-efficacy. Consequently, they worked to reassure general education teachers and parents who expressed trepidation about inclusive education for students with SD and CHCN. Such endeavors appear notably necessary and significant in promoting inclusion for this population as other school professionals may experience apprehension due to students' medical conditions (Jones et al., 1996; Lehr, 2014) and parents may worry about their children's' safety outside the perceived protection of the special education classroom (Diehl et al., 1991). Thus, special education teachers play an instrumental role as inclusion coordinator, working alongside school nurses to oversee the health and safety of students, and helping IEP team members and other school personnel to feel safe and comfortable (Lehr, 2014; Ward & Ward, 2014).
Despite many positive findings surrounding special education teachers' advocacy endeavors, they appeared to struggle with strategies to promote inclusive education for students with SD and CHCN when faced with attitudinal and administrative barriers. A major challenge identified was general education teachers (who taught academic curriculum) that were unwilling to accommodate students. Students with SD and CHCN are particularly at risk for falling behind in the curriculum due to a range of health-related issues, including pain, chronic fatigue, frequent illness, and prolonged hospitalizations. A coordinated effort among educators is necessary to plan for accommodations that ensure the educational success of students who present with chronic medical conditions (Thies, 1999). It is possible that participants did not have knowledge of professional strategies to plan for these accommodations or administrator leadership to establish a school-wide climate of inclusion for students with SD and CHCN. Administrators play a key role in the successful adoption and implementation of school-wide inclusive educational practices (Doyle & Giangreco, 2013). Additionally, school policies requiring the common core to be taught in the special education classroom likely added to the emphasis on inclusion in elective courses. Several authors have noted that standards-based reform may have the unintended consequence of causing a backlash to inclusive education (Jackson, Ryndak, & Wehmeyer, 2008; Ryndak et al., 2014).
Finally, participants did not emphasize the community as a context for inclusive education or participation in extra-curricular activities, except for disability-focused programs such as Special Olympics. This is particularly concerning because the community is a natural setting for older students to interact with peers and learn skills based on their individual goals for adult life (Doyle & Giangreco, 2013; Dymond, 2012). Nursing shortages and related administrative barriers reported apparently made community participation particularly challenging, which may explain why participants concentrated their efforts on including students within school campus settings. In addition, participants did not talk about post-high school goals for their students, which also may account for teachers' limited consideration of community-based instruction.
Several limitations warrant consideration. This was an exploratory study that relied on self-report and a small number of participants. Additionally, participants taught students that were representative of only a few CHCN. Therefore, the data are unique to individual participants and may not represent the beliefs and experiences of other special education teachers who educate middle school and high school students with SD and CHCN. Second, recruitment occurred at the end of the school year and extended into the summer. The timing of recruitment may have resulted in fewer interested participants. Another potential explanation may be that 145 school-age children with SD and CHCN in Illinois are placed outside of public schools in institutional settings (Illinois Department of Human Services, 2016). Finally, it is unknown if data saturation was reached given the small sample size, or if possible given the heterogeneity of students with SD and CHCN.
Implications for Research
The findings of this study pose several implications for future research. Given the preliminary, descriptive, and focused nature of the current study, future research that investigates all key stakeholders using multiple case study or grounded theory methods is needed to formulate a more holistic understanding of how inclusive education for secondary age students with SD and CHCN is, or is not, addressed in schools. Research is also needed to examine factors that influence where and how long students are included, as well as why disability specific programs (e.g., Best Buddies, Special Olympics) may be perceived more favorably. Finally, participants reported significant differences in the average amount of time students with SD and CHCN spent in inclusive settings on a daily basis (0-200 minutes). Examining differences in variables associated with low-rates versus high-rates of inclusion, may aide in identifying factors that enhance inclusive education for this population.
Implications for Practice
Secondary age students with SD and CHCN require supports and systems that are responsive to their unique health needs in order to experience and benefit from inclusive education. Special education teachers can increase their skills and knowledge of how to successfully include this population by working with the school nurse and other team members. Health training, provided by the school nurse, is essential for all school personnel in order to ensure the safety of students and self-efficacy of personnel to feel comfortable including students with SD and CHCN. Additionally, special and general education teachers may benefit from learning strategies to accommodate students and modify the curriculum to reduce the impact of students' health on their learning and participation. Finally, administrators should provide leadership in fostering a school-wide commitment to inclusive education. In order to ensure students with SD and CHCN experience successful inclusion in school and community contexts, the evaluation and appropriate revision of administrative policies is necessary. Efforts to recruit and employ adequate numbers of qualified school nurses must also be a front and center goal, as special education teachers and other IEP team members require their expertise to safely include this population across settings.