Society benefits when every person has the education and skills to contribute to the best of their abilities. Education is fundamental to that ability to contribute. Access to education is a social determinant of health that can predict a student’s future health, contributions, and financial opportunity even into adulthood and a potential future family. This article introduces a case study of a student with a disability and with discussion and application of statutes requiring a free and appropriate public education. The discussion includes history of support for students with disabilities, the school nurse role, and principles of nursing support, including resources for practice. Finally, a brief description provides information about important professionals who can contribute as members of the school team. Supporting students with disabilities in schools provides the foundation for their ability to function and contribute as adults.
Key Words: School nursing, disabilities, Section 504, special education, equity
More than 40% of school-aged children in the United States have some form of chronic health condition...A disability is a physical or mental impairment that “...substantially limits one or more major life activities” (Americans with Disabilities Act [ADA], n.d., p. 1). Advances in medical care over the last several decades have increased the survival rates of children born premature, and those who live with cancer and a variety of other previously fatal health conditions. These children now come to school from every clinic in the most comprehensive medical center and require nursing care to attend school safely. They may require support for assisted ventilation and/or feeding tubes for severe cardiac, respiratory or other health conditions, interventions more typically associated with a hospital setting. The National Survey of Children’s Health, published in July 2020, reported that 13.6 million children (18.5%) in the United States (US) had a severe, chronic healthcare need affecting one quarter (24.8%) of the households the US. (U.S. Department of Health Resources and Services: Maternal & Child Health [HRSA], 2020).
More than 40% of school-aged children in the United States have some form of chronic health condition, such as asthma, obesity, behavior or learning problems (Centers for Disease Control and Prevention [CDC], 2021b). For example, about one tenth of school-aged children experience asthma, affecting children of color and those living in poverty at higher rates (American Lung Association [ALA], n.d.). Asthma in children has significant costs in healthcare, lost parental work, and the loss of 7.9 million school days for the 2.2 million children affected in 2018 (ALA, n.d.). Of every 1000 students, there are about six with seizure disorders, also a cause of chronic absenteeism (defined as missing 10% of school days) for affected students (CDC, 2021b). Success in treating pre-term infants has resulted in extraordinary survival rates and children progressing to school, many with a variety of mild to moderate impairments ranging from cerebral palsy to vision or hearing deficits (including cochlear implants), and neurodevelopmental issues (Bell et al., 2022). These are children who need nursing care at school.
Children with special healthcare needs are even more likely to be absent from school...Students who live in the intersection of poverty and racism are particularly vulnerable to the impacts of their disability(ies) on their education and quality of life (Forum on Child and Family Statistics, 2021; National Association of Chronic Disease Directors [NACDD], 2016). Poverty puts a student at higher risk of chronic absenteeism (Attendance Works, 2018). Children with special healthcare needs are even more likely to be absent from school, and nearly 8% have unmet health needs (HRSA, 2020). These factors combine to put the child with disabilities at risk for chronic absenteeism, which in turn puts them at risk of delayed reading skills, disengagement in middle school, and high school dropout (Robert Wood Johnson Foundation [RWJF], 2016). Ultimately, they have limited ability to secure employment, and live longer and healthier lives (Attendance Works, 2018; RWJF, 2016).
The presence of a school nurse can improve attendance...The presence of a school nurse can improve attendance through supportive follow up calls to explore absence reasons; referrals to community resources; parental assurance of their child’s safety at school due to the physical presence of a nurse; and creating conditions that promote management of a student’s health condition at school. Improving attendance for children with disabilities increases opportunities for them to graduate from high school, perhaps attend college, and live fuller, healthier, and more productive lives.
Parents of children with chronic health conditions may themselves experience poorer health outcomesCaring for a child with a disability also has an impact on the parents and family of that child. A quarter of the family members of children with disabilities spent significant time providing healthcare for their child (HRSA, 2020). Poverty further limits the ability of families to provide care for their disabled child. Care of children with disabilities, particularly those with more severe disabilities, may create a financial hardship for families that impacts time, treasure, and use of goods and services (Anderson et al., 2007; Houtrow et al., 2020; Vessey et al., 2017). Parents of children with chronic health conditions may themselves experience poorer health outcomes (Cohn et al., 2020; Pilapil et al., 2017). The impacts of a child’s disability on the family requires that society, health systems, and especially schools, provide support to optimize the structural integrity of the family, and the ability of the student to achieve their adult potential.
Supporting students with disabilities in schools provides the foundation for their ability to function and contribute as adults. This article begins with a case study of a student with a disability and follows with discussion and application of statutes requiring a free and appropriate public education (FAPE). The discussion includes history of support for students with disabilities, the school nurse role, and principles of nursing support, including resources for practice. Finally, a brief description provides information about important professionals who can contribute to the school team.
Case Study of a Student with a Disability
The following case study is based on the actual experiences of one student. She is now an adult and has given consent to include this information. Some of the examples are real; others represent the author’s illustration of an idealized process. While federal law requires accommodations for students with disabilities, there are differences in how the accommodations are implemented depending on the student's access to a registered nurse at school, differences by district in inclusion of the school nurse in disability planning, and other barriers.
Patricia was five years old when her seizures started. Before she turned seven, she was experiencing 200 seizures a day that were not responsive to the five anti-seizure medications she was prescribed. She was ultimately diagnosed with Rasmussen’s Encephalitis, a rare, progressive inflammatory condition that causes severe neurological impairment (National Institutes of Neurological Disorders [NINDS], 2022). The condition of children with untreated Rasmussen’s Encephalitis often progresses to living in fetal position with constant, debilitating seizures. Patricia would ultimately require brain surgery to control her seizures and limit progression of the disease.
Supporting students with disabilities in schools provides the foundation for their ability to function and contribute as adults.Before her surgery, Patricia’s school nurse made sure that she was safe at school, training teachers and other school staff how to recognize a seizure, creating emergency care plans, administering emergency seizure medications for status epilepticus, and allowing Patricia to rest in the health room post-ictally to increase her ability to participate in her schooling as much as possible. Her school nurse invited Patricia’s mom to a school nursing conference to learn more about supports for students with disabilities, and supported her in identifying community resources to help Patricia and her family manage her seizures. This support included the Katie Beckett Medicaid Waiver Program (Pleat, 2016) to help with multiple, expensive out-of-state trips for treatment. Patricia’s school nurse made it possible for her to attend school before her surgery, through advocacy for special education services to assure her access to school, and support for her family as they dealt with the severity of Patricia’s health condition.
Patricia’s school nurse made it possible for her to attend school before her surgery...The family lived in small, rural state and her care was too complex for the local hospital, so they took her to a large children’s medical center in another state. The neurology team there recommended a right anatomical hemispherectomy, removal of half of her brain to halt the progress of the condition (NINDS, 2022). The surgery was successful; the seizures stopped and Patricia’s cognitive status was intact, but she and her family were left with months of rehabilitation and a severe motor disability. They had questions about her future school attendance.
After her hospital recovery and initial rehab, it was time to prepare for Patricia’s return to school. Because of her disability, she again qualified for a broad array of special education services. A multidisciplinary team of her parents, the school nurse, her classroom teacher, a special education teacher, occupational therapist (OT), physical therapist (PT), mobility therapist, and speech and language pathologist gathered to discuss her needs in preparation for Patricia returning to school.
The school nurse gathered pertinent health information from Patricia’s healthcare team, including the diagnosis that described the disability that would qualify her for services. Each team member used their individual professional skills to evaluate Patricia’s functional capabilities and their impact on her ability to access her federally guaranteed right to a FAPE. It was a long road for Patricia and her family to maintain her educational progress in the face of such significant health problems, but assuring access to FAPE helped her to safely attend school, progress academically, and access social opportunities with her peers.
The disability accommodations required by federal law gave Patricia the support needed to safely attend school...Thirty years later, Patricia holds a degree in creative writing and a graduate degree in leadership, lives independently, and is employed full-time. The disability accommodations required by federal law gave Patricia the support needed to safely attend school, receive accommodations to engage in learning, and ultimately graduate from high school, college and graduate school. Patricia’s success is repeated hundreds of thousands of times in school districts across the United States (U.S. Department of Education [U.S. DOE], 2022b).
Education and its access are a social determinant of health (SDOH) that predicts a student’s future health, future ability to contribute to society, and their future financial opportunity (CDC, 2021a; RWJF, 2016; U.S. Bureau of Labor, 2022). Financial opportunity predicts their future health, and even the well-being of their future family and children as the student becomes an adult. Society benefits when every person has the education and skills to contribute to the best of their abilities. Education is fundamental to that ability to contribute. Supporting students with disabilities in schools provides the foundation for their ability to function and contribute as adults.
Statutes Requiring Free Appropriate Public Education
The History of Support for Students with Disabilities
Students with health conditions may qualify for disability accommodations in school under two federal statutes...Students with health conditions may qualify for disability accommodations in school under two federal...statutes: 1) Section 504 of the Americans with Disabilities Act Amendment Act (ADAAA) and the 2) Individuals with Disabilities Education Improvement Act (IDEIA). Both federal statutes have been regularly updated since their initial passage decades ago to improve protections for students with disabilities and clarify the responsibilities of schools to serve them.
Section 504 of the Americans with Disabilities Amendment Act (ADAAA)
Section 504 is part of the Americans with Disabilities Act (ADA) first signed into law in 1990 to protect the civil rights of all Americans with disabilities (ADA, n.d.). The law assures that people with disabilities can benefit from, and physically access education, employment, commercial establishments, government buildings, and schools in the same way as everyone else. The ADA was amended to expand its protections in 2008. The U.S. Department of Education Office for Civil Rights (OCR) is responsible for addressing questions about rights of students with disabilities (ADA, n.d.). Section 504 could be applied for a student with a seizure disorder that is less severe than Patricia’s (i.e., that does not impact their ability to learn but still impacts their ability to safely attend school). For example, the student could qualify for accommodations which may include training of school staff by the school nurse to recognize and respond to a seizure; providing extra time to complete assignments after a seizure; and access to medication at school to help manage seizures.
Individuals with Disabilities Education Improvement Act (IDEIA)
Infants and toddlers with disabilities may qualify for services...If the seizure disorder or other health condition is severe enough to affect a student’s ability to learn, as Patricia’s did, they may qualify for special education services in addition to the 504 accommodations. Patricia received services in her individualized education plan (IEP) for the health services provided by the school nurse, as well as services for OT, PT, speech and language services (all known as related services), and academic support from an IEP when she qualified for special education.
...there are requirements for schools to support students as they make the transition to life after high schoolStudents may qualify to receive special education services in a variety of disability categories that include: intellectual disability, a hearing impairment (including deafness), a speech or language impairment, a visual impairment (including blindness), a serious emotional disturbance, an orthopedic impairment, autism, traumatic brain injury, other health impairment, a specific learning disability, deaf-blindness, or multiple disabilities (U.S. DOE, 2018). Infants and toddlers with disabilities may qualify for services under the Early Intervention Program for Infants and Toddlers with Disabilities (U.S. DOE, 2022a), and children ages 3-9 may qualify for services if they experience a developmental delay in physical, cognitive, communication, social or emotional, or adaptive development (U.S. DOE, 2018). In addition, there are requirements for schools to support students as they make the transition to life after high school (U.S. DOE, 2021). Special education services support those students with qualifying disabilities from birth to age 21.
The History of Support for Students with Disabilities
The Civil Rights Era of the 1950s and 1960s prompted parents to advocate for and achieve several federal statutes to protect the rights of their children with disabilities... The Civil Rights Era of the 1950s and 1960s prompted parents to advocate for and achieve several federal statutes to protect the rights of their children with disabilities to enable them to access a free appropriate public education or FAPE (U.S. DOE, 2022b). The first protections for students with disabilities were in the Education for All Handicapped Children Act (EHA) enacted into law in 1975. Before its passage many children with disabilities lived in state institutions with little opportunity or the access to education that would enable them to be prepared for independent life (U.S. DOE, 2022b). The success of educational access facilitated by these disability statutes is demonstrated in the results and the speed with which laws expanding the rights of children with disabilities have been enacted.
Just a few years after EHA, in the 1976-77 school year “... 3,694,000 students aged 3 through 21 were served under the EHA” (U.S. DOE, 2022b, para. 15); these students would have previously been excluded from school. In 1986, access to educational programs was extended to infants, and by the 1990-91 school year, an additional one million children, including, “...4,710,000 infants, toddlers, children, and youth with disabilities from birth through age 21 were served under IDEA” (U.S. DOE, 2022b, para. 20). This era also saw the push toward inclusion of students receiving special education services into general education classes. By 1995, more than half of students with disabilities graduated with a high school diploma, a stunning contrast to their parents’ generation when students with disabilities were excluded from school (U.S. DOE, 2022b). The EHA was reauthorized in 2004 as IDEA, or the Individuals with Disabilities Education Act, and amended in the Every Student Succeeds Act in 2015 (U.S. DOE, n.d.).
This era also saw the push toward inclusion of students receiving special education services into general education classes.Revisions to the law in the 1990s clarified that nursing services for students with disabilities provided by a “qualified school nurse” were included in the related services required under special education statutes (U.S. DOE, 2017a; Wright, 2006). Related services under IDEA include:
...transportation and such developmental, corrective, and other supportive services as are required to assist a child with a disability to benefit from special education, and includes speech-language pathology and audiology services, interpreting services, psychological services, physical and occupational therapy, recreation, including therapeutic recreation, early identification and assessment of disabilities in children, counseling services, including rehabilitation counseling, orientation and mobility services, and medical services for diagnostic or evaluation purposes. Related services also include school health services and school nurse services, social work services in schools, and parent counseling and training (U.S. DOE, 2017a, p. 1).
Before the passage of these laws, nearly 1.8 million children with disabilities had been denied an education...Before the passage of these laws, nearly 1.8 million children with disabilities had been denied an education, but in the 2018-19 school year, over 70% of students with disabilities graduated with a high school diploma and 7.5 million children with disabilities had the opportunity to receive the education they need to “develop their talents, share their gifts, and contribute to their communities” (U.S. DOE, 2022b, para. 3).
The School Nurse Role in Caring for Students with Disabilities
Description of Role
School nurses support students with disabilities by creating conditions that increase the ability to attend school safely and making the link between health needs and accommodations required to access FAPE. The National Association of School Nurses (NASN) defines school nursing as:
...a specialized practice of nursing, [which] protects and promotes student health, facilitates optimal development, and advances academic success. School nurses, grounded in ethical and evidence-based practice, are the leaders who bridge health care and education, provide care coordination, advocate for quality student-centered care, and collaborate to design systems that allow individuals and communities to develop their full potential (NASN, 2017, 1).
School nurses support students with disabilities by creating conditions that increase the ability to attend school safely... School nurses serve at the intersection of health and education. Their practice is influenced at the national, state, and district level by norms and statutes from both education and nursing, including the state level nurse practice acts as with every other nurse. School nursing is grounded in population health and addresses individual and community level health problems with a focus on prevention (NASN, 2022). School nurses serve students who are well and those with severe chronic health conditions; students of every age from three years to age 21; have large caseloads that may number in the thousands of students; and may be responsible for multiple school buildings located at a distance from one another (NASN, 2022). They navigate policies and school norms within the context of nursing statutes that administrators in the discipline of education may not fully understand or recognize (NASN, 2022).
Coordinating care of students with chronic health conditions requires attention to a variety of factors. Coordinating care of students with chronic health conditions requires attention to a variety of factors. The NASN recommends the school nurse as the leader of the care coordination team, “... using a holistic student-centered approach which requires collaboration among students, school staff, parents/caregivers, community-based providers, and others both inside and outside the school (e.g., psychologists, social workers, other medical professionals, out-of-school time staff)" (NASN, 2020c, p. 1). The NASN, CDC, National School Lunch Program, Association for Supervision and Curriculum Development (ASCD), and Alliance for a Healthier Generation endorse a Local Wellness Policy (LWP) to coordinate the care of students and staff (NASN, 2020c). Recommended components of the LWP include:
1) school nurse led care coordination,
2) alignment of health services with statutes,
3) access to a school nurse,
4) school, family and community engagement,
5) positive school environment,
6) adequate resources, and
7) continuous quality improvement (NASN, 2020c).
Of note, the recommendations require inclusion of school nurses on educational planning teams and multidisciplinary planning teams, such as 504 and special education planning (NASN, 2020c).
The NASN describes the role of the school nurse on IDEA and Section 504 teams as “essential” (NASN, 2018a). This organization reinforces that the school nurse is responsible to understand statutes that drive care of students with disabilities, provide care coordination, and evaluate the impact of health conditions on a student’s ability to access their education (NASN, 2018a). The role of the school nurse is to, “...identify needed health accommodations, outline a plan of care, provide nursing services, and evaluate the health-related components of the IEP and/or 504 Plan” (NASN, 2018a, p. 14). The Every Student Succeeds Act (the amended IDEA) recognizes school nurses as members of teams of Specialized Instructional Support Personnel (SISP) qualified to provide, “assessment, diagnosis, counseling, educational, therapeutic, and other necessary services” for students in special education (NASN, 2020d, p. 2).
Review of Selected Evidence
Of note, the recommendations require inclusion of school nurses on educational planning teams and multidisciplinary planning teams...The complexity of the school nursing role is revealed in a secondary analysis of a survey of experienced school nurses (Morse et al., 2022). The job analysis survey was conducted in 2018 for the National Board for Certification of School Nurses (NBCSN) as part of a role delineation study. Role delineation studies are surveys of content experts (i.e., school nurses) and are required by the Accreditation Board for Specialty Nursing Certification to develop the competency tests of responsibilities, knowledge and competencies needed for performance in the role (Morse et al., 2022). Survey respondents reported school nurses performing “...124 specific tasks very often, six tasks often, 33 tasks occasionally and 19 tasks seldom” (Morse et al., 2022, p. 131). Tasks rated as most important were related to privacy; knowledge of national, state and local statutes, guidelines, policy; licensure; documentation of medication administration; protection of student privacy; and communication with parents/guardians. Knowledge areas rated as most important were anaphylaxis management, administration of prescriptions, medical authorizations, head trauma, and documentation (Morse et al., 2022).
The importance of team collaboration was described in a mixed-studies review that used an ecological model to look at facilitators and barriers to caring for school aged children with chronic health conditions. At the interpersonal level, relevant factors included: collaboration and communication; support of parents; team approach; and meetings with stakeholders (Uhm et al., 2020). At the institutional level, important factors for care were: availability of resources for staff and students; practice guidelines and role boundaries; support of administrators; and case management (Uhm et al., 2020). Finally, at the community and public policy level, crucial factors were: equity; legislation and plans for action; and a system for data sharing (Uhm et al., 2020).
School nurse experts endorse the need for collaboration...to properly care for students School nurse experts endorse the need for collaboration with school social workers; school counselors and school psychologists; and community healthcare providers to properly care for students (Morse et al., 2022). They rated interprofessional collaboration as “important” and which was “performed often” to support student health. Despite this endorsement by school nurses, multiple sources describe uneven inclusion in interdisciplinary consultation or on teams leading to challenges in providing appropriate care (Bonenkamp et al., 2015; Logan et al., 2008; Shannon et al., 2010; Yonkaitis & Shannon, 2017)
Systemic challenges of providing care for students with disabilities is further described by school nurses who navigate the intersection of two complex systems: health and education, each with disparate goals and objectives. School nurses expressed a need for continuing education (CE) to develop strategies to work with non-nursing administrators, and interactions with those stakeholders who might be “challenging, defiant, or noncompliant” (Morse et al., 2022, p. 12). They voiced the need for hands-on training for technical skills needed for students with tracheostomies, ports, and assessments and appliances to care for students with Type I Diabetes. Nurses also reported that CE obtained was often unpaid and occurred outside of work hours, versus training typically provided as part of employment in a hospital or clinic setting (Morse et al., 2022).
While the structural supports (e.g., nurse staffing, continuing education, student support structures that integrate the school nurse) for the nursing care of students with disabilities have gaps, the processes of providing nursing care for students with disabilities are grounded in principles of nursing care. The following section addresses some of these process supports.
Principles of Nursing Support for Students with Disabilities
There are a number of resources to support nursing care of students with disabilities. These include resources from NASN, the American Nurses Association (ANA), the CDC, and others.
Resources for Practice
School Nursing: Scope & Standards of Practice 4th Edition. School Nursing: Scope & Standards of Practice (NASN, 2022) describes the who, why, how, where, when and what of the school nursing role. This document describes the importance of a school nurse present in schools “all day, every day” to assure that all children, those who are well and those with health conditions, are safe, healthy and ready to learn (NASN, 2022). This publication also covers the school nurse’s duty to social justice, and standards of practice such as care coordination, advocacy, equity, and quality.
NASN’s Framework for 21st Century School Nursing Practice. The NASN 21st Century Framework (NASN, 2016) describes components of school nursing practice. The concept of students who are, “healthy, safe, and ready to learn” (NASN, 2016, p. 1) is the center of the framework with families and communities encircling the student and providing support. Practice is circumscribed by the School Nursing: Scope and Standards of Practice document (NASN, 2022). Within the framework are pillars of Care Coordination, Leadership, Quality Improvement and Community/Public Health. Each pillar includes nursing activities that describe relevant practice.
NASN Code of Ethics. The NASN Code of Ethics (NASN, 2021) has nine provisions that describe ethical school nursing practice. They address:
1) the inherent dignity and worth of every person,
2) the nurse’s primary commitment to the patient,
3) protection of the rights, health and safety of patients,
4) the nurse’s authority, accountability, and responsibility for nursing practice,
5) duty to self,
6) commitment to a safe, ethical work environment,
7) commitment to life-long learning, evidence-based practice and quality improvement,
8) reduction of health disparities, and
9) integration of social justice.
Ethical practice is a cornerstone of school nursing practice and a standard in the School Nursing: Scope & Standards of Practice (NASN, 2022).
Health Equity and Social Justice
The Office of Disease Prevention and Health Promotion ([ODPHP], 2022) recognized that many factors contribute to inequity in health, including race or ethnicity, sex, sexual identity, age, disability, socioeconomic status, and geographic location. The County Health Rankings Model (County Health Rankings, 2022) identifies 30 measures in four categories that influence health outcomes: 1) physical environment (10%); 2) clinical care (20%); 3) health behaviors (30%); and 4) social and economic factors (40%). The social and economic factors include education as a SDOH (County Health Rankings, 2022).
Disability laws set the stage, and school nurses act to make sure that students with disabilities are safe at school. ODPHP (2022) described determinants of health as biology, genetics, individual behavior, access to health services, socioeconomic status, physical environment, discrimination, racism, literacy levels, and legislative policies. Intersectionality refers to the combined and cumulative impact of these types of disparities on an individual’s health (Merriam-Webster, 2022). Nurses’ social contract with society requires attention to social justice and equity principles to reduce the impact of intersecting disparities on access to education (NASN, 2021; NASN, 2022). For example, a student of color, who lives in poverty, and has a chronic health condition that qualifies as a disability needs the health and education systems to collaborate to assure that the student can safely attend school and learn. Disability laws set the stage, and school nurses act to make sure that students with disabilities are safe at school. Health equity and social justice principles are essential characteristics of the nursing care for students with disabilities.
Nursing delegation is “…[a] nursing activity, skill or procedure that is transferred from a licensed nurse to a delegate” which allows the delegate to “perform a specific nursing activity, skill, or procedure that is beyond the delegatee’s traditional role and not routinely performed” (ANA & National Council of State Boards of Nursing [NCSBN], 2019, p. 1). There are five rights to appropriate delegation: 1) right task, 2) right circumstance, 3) right person, 4) right directions and communication, and 5) right supervision and evaluation. The needs of the patient/population, predictability and stability of their condition; the competence and capacity of the delegate; and the “…ability of the licensed nurse to supervise the delegated responsibility and its outcome” are the grounding principles of delegation decisions (ANA & NCSBN, 2019, p. 7).
Delegation in schools is further refined by the NASN as:
...the assignment by the school nurse – not a school administrator – to a competent unlicensed individual (also called unlicensed assistive personnel [UAP]) the performance of a selected nursing task in a selected situation for an individual student. The school nurse facilitates the UAP training, evaluation of UAP competence, and provides for ongoing supervision of the UAP and evaluation of the student’s health outcomes. The nursing process can never be delegated (NASN, 2018b, p. 1).
Delegation requires ongoing training and supervision of the UAP to whom the task is delegated (NASN, 2020a). The NASN has also created a checklist of qualifications for the delegate of the school nurse, when that person is providing healthcare for students. This checklist includes such criteria as education, personal attributes, interpersonal attributes and effectiveness in an emergency (NASN, 2014).
Care coordination is “...deliberately organizing patient care activities and sharing information among all of the participants concerned with a patient's care to achieve safer and more effective care” (Agency for Healthcare Research & Quality [AHRQ], 2018, p. 1). The NASN states “[c]are coordination refers to the oversight and alignment of multiple evidence-based components and interventions that support the health and well-being of students with chronic health conditions” (NASN, 2019, p. 4). NASN leaders convened a national Strategy to Action Roundtable in 2018 to define components of care coordination that include:
1) students and families at the center of care,
2) a whole child focus,
3) collaborative development of goals by the student, family and the entire school health team,
4) incorporating those goals into an Individualized Healthcare Plan (IHP),
5) translating the IHP to other school personnel,
6) assessment of progress toward goals,
7) periodic and collaborative meetings to update the plan, and
8) “harmonizing” the plan within a holistic manner (NASN, 2019).
Care coordination for students with disabilities is impacted by the workload of the nurse providing the care. It is often driven by the numbers and acuity of students, as well as SDOHs (Jameson et al., 2020).
Care coordination for students with disabilities is impacted by the workload of the nurse providing the care. In a study of school nursing workforce, Willgerodt et. al (2019) identified that students in western states in the US had limited access to a registered nurse (RN) at school. In a subsequent study, Willgerodt et. al (2020) described the impact of that limited RN access on how care coordination happens in schools. In state-wide focus groups, the research identified the importance of clear communication, information sharing, effective teams and supportive relationships to assure the safety of children with Type I Diabetes and providing support for parents to cope with demands of this complex condition (Willgerodt et al., 2020). In particular, the research emphasized the need for teams to “...work collaboratively to develop flexible structures and processes that consider various child, family, and school contexts” (Willgerodt et al., 2020, p. 656) in order to develop the conditions needed for safety of students with complex health conditions and support for their families.
...access to attendance data can be limitedAttendance is a key factor in school success for all students. Attendance is influenced by many “interdependent and complex” factors (NACDD, 2016, p. 1); this is particularly true for students with disabilities. Analyzing attendance data for students with chronic health conditions is important to identify specific strategies to create optimum student engagement. However, while the school nurse has access to health information about their students, access to attendance data can be limited (NACDD, 2016). The NACDD recommends collaborative team processes as well as a number of supports for school nurses to perform attendance analyses for their students with chronic health conditions. This can increase the chance of identifying a successful strategy. Examples of strategies include: 1) systems and processes to link attendance and health data; 2) technical support for attendance officers and school nurses to obtain high quality data on attendance; and 3) use of community health data in conjunction with school data to identify root causes of absenteeism (NACDD, 2016). School nurses support attendance, particularly for students with disabilities, in a variety of ways described above.
The Whole School, Whole Community, Whole Child (WSCC) Model
The WSCC Model was created by the CDC (2022) to support “...integration and collaboration between education leaders and health sectors to improve each child’s cognitive, physical, social, and emotional development” (p. 1). Utilizing 10 components such as health services, social services, and families, WSCC places students at the center of policy, process, and practice to assure that they are safe, healthy, challenged, engaged, and supported. WSCC describes the role of each of the component sectors to coordinating community, family, and school resources to raise healthy, educated children. The model includes an application that takes schools and communities on a virtual tour of a school where the WSCC model drives student health. The importance of each member of the school team is described in the section below.
The School Team
Interdisciplinary and Multidisciplinary Teams
The complexity and intersectionality of underlying causes of many health problems call for an interdisciplinary approach. This is recognized both in federal statute and research evidence. Intersectionality (Merriam-Webster, 2022), or the complex overlap of many forms of discrimination experienced by people marginalized by health conditions (e.g., poverty, racism), is important to consider when providing care for students with disabilities. There are a number of studies that have reinforced the value of inter- and multi-disciplinary teams in the care of clients with complex or life-threatening issues such as students with disabilities (Norful et al., 2022; Oliver et al., 2022; Viaplana et al., 2016); Zeiss & Steffen, 1998). Interdisciplinary teams can support “...integration of care, higher satisfaction levels … and an increased confidence amongst families” (Viaplana et al., 2016, p. 1).
Interdisciplinary teams are group of professionals who work interdependently and in an integrated fashion...Multidisciplinary teams are a group of professionals who work in conjunction independently, but interact and communicate with each other formally, typically in team meetings. Assessments and interventions are done in parallel and not necessarily collaboratively. Interdisciplinary teams are group of professionals who work interdependently and in an integrated fashion; assessments and interventions are often done jointly working towards to a set of child and family focused goals. Interaction and communication amongst team members happen both formally and informally and problems are solved collaboratively in a systematic manner (Nancarow et al., 2013).
Nancarrow et al. (2013) performed a systematic literature review and workshop interviews to identify ten principles that support effective interdisciplinary team work. These principles included:
1) leadership and management,
3) personal rewards, training and development,
4) appropriate resources and procedures,
5) appropriate skill mix,
7) individual characteristics,
8) clarity of vision,
9) quality and outcomes of care, and
10) respecting and understanding roles.
Bringing together a team of professionals from different disciplines, each with expertise in their own domain, provides students with the resources they need to access a FAPE.
Members of the team evaluating students for special education services must include the following at a minimum: parents; regular education teacher(s); special education teacher(s); school administrator who supervises the delivery of specially designed instruction, is knowledgeable about the education curriculum and the available resources; and an individual who can interpret results of the evaluation (U.S. DOE, 2017b). Additional members, if requested by the parent, may include other individuals with relevant knowledge or expertise. This may include a school nurse if the student has a health condition; speech and language pathologists; OT/PT and other specialists (U.S. DOE, 2018). Depending on student needs, the team should include the child or a representative to assure individual transition preferences are considered (U.S. DOE, 2018).
Members of the School Team
Parents & Families. IDEIA defines the “parent” as biological, adoptive, foster, guardian, surrogate or individual acting in the place of a parent, such as a grandparent or other relative (U.S. DOE, 2017c). IDEIA identifies the rights of parents when describing responsibilities of school districts. Parents know their child as an individual and provide important insights into function outside of the classroom (U.S. DOE, 2017b).
The center of care is a student who is healthy, safe and ready to learn... School Nurse. A key element of the nurse’s role in the management of disabilities in the school setting is care coordination. The NASN describes a “circle of support” (NASN, 2020b, p. 1) for students with health conditions to promote student success. The circle includes the student at the center of care; school nurse as the expert in delivery of health services in schools, and the leader of care coordination at school; the family, who knows the student’s health history, personality, and responses; the medical provider, who is expert in the student’s health condition(s); and the school personnel, who are experts in delivering education. Each team member in this circle of support has certain responsibilities to enable the student’s health and educational success, as outlined by the NASN. For example, school nurses provide surveillance to identify students in need of healthcare coordination. They apply the nursing process (i.e., assessment, diagnosis, planning, implementation, evaluation) to the health needs of the student at school. This includes training school staff to recognize and appropriately respond to emergent and routine health needs of the student (NASN, 2020b). The center of care is a student who is healthy, safe and ready to learn through “consistent engagement and communication” in the circle of support (NASN, 2020b, p. 1).
Classroom Teacher. The National Education Association (NEA) defines a classroom teacher as a person who helps “... children achieve academically and learn the skills they will need to be successful and productive citizens” (NEA, 2022, para. 1). Classroom teachers have expertise about typical developmental and educational progress of the age range of students they teach. The classroom teacher supports the inclusion of special education students in a classroom of student peers.
School Administrator. School administrators are experts in curriculum and school resources. They supervise school personnel responsible to provide school services. They offer “...instructional leadership and developing, implementing, and evaluating district and school systems and policies” (National Center on Safe Supportive Learning Environments [NCSSLE], 2022a, p. 1). They operate under direction from the school board and include superintendents, principals, and assistant principals. Administrators are ultimately responsible for assuring the student has access to a FAPE.
Special Education Teacher. Special education teachers specialize in teaching the special education student population they serve. They typically assess a student’s present levels of performance, make recommendations on services required to access a FAPE, and develop learning goals and measures of progress for the student’s IEP (Teach.com, 2022).
School Psychologist. School psychologists “apply expertise in mental health, learning, and behavior, to help children and youth succeed academically, socially, behaviorally, and emotionally”(National Association of School Psychologists, 2021, p. 1). The school psychologist often does cognitive testing to determine a student’s expected level of academic performance. They compare this expectation to the actual performance as described by the classroom or special education teacher to determine if there is a disability that affects ability to learn.
Speech & Language Pathologist. Speech and language pathologists are experts in communication skills and support students in speech sounds, language, social communication, voice, and fluency (American Speech-Language-Hearing Association, n.d.). Students may first be identified and qualified for special education services at age three due to difficulties in producing developmentally appropriate or recognizable speech.
Occupational & Physical Therapy. Occupational therapists use “...meaningful activities (occupations) to help children and youth participate in what they need and/or want to do in order to promote physical and mental health and well-being ... [including] physical, cognitive, psychosocial and sensory components of performance. In schools, occupational therapy practitioners focus on academics, play and leisure, social participation, self-care skills (ADLs or Activities of Daily Living), and transition/ work skills” (American Occupational Therapy Association, n.d., p. 1). Physical therapists apply “...evidence-based practices regarding the general growth and development of all students, as well as health, wellness, fitness, injury prevention, and obesity management” (Academy of Pediatric Physical Therapy, 2012, p. 1).
School Counselor. School counselors “...maximize student success, promoting access and equity for all students” (American School Counselor Association, n.d., para. 1) through counseling on academic achievement and strategies; management of emotions and building interpersonal skills; and planning for life after high school. Direct services (i.e., face to face with the student) include instruction, appraisal, and advising and counseling; indirect services include consulting, collaboration, and referral to appropriate services.
Medical Provider. Medical providers diagnose and treat medical conditions that result in a disability that may qualify a student for 504 or special education services. Licensed by their state, providers include medical doctors, nurse practitioners, physician assistants, and others. The American Academy of Pediatrics (AAP) cites the school nurse’s ability to interpret medical recommendations for the school and echoes the theme of quality team care that depends upon “shared goals, clear roles, mutual trust, effective communication, and measurable processes and outcomes” (AAP, 2016, p. 2).
Community Agencies. Community agencies often provide resources for students under the direction of the school. For example, counseling services for students may be a part of the IEP or they may participate in after school activities. “Family-school-community partnerships are a shared responsibility and reciprocal process whereby schools and other community agencies and organizations engage families in meaningful and culturally appropriate ways, and families take initiative to actively support their children’s development and learning” (NCSSLE, 2022b, para. 1).
...the more complex a student’s disability, the greater the need for a diverse and effective team to assure success at school. In sum, the more complex a student’s disability, the greater the need for a diverse and effective team to assure success at school. The student’s right to a FAPE directs their right to a team comprised of the appropriate individuals described above.
Students with disabilities have a federally protected right to receive a free appropriate public education. Education and its access are a SDOH that is particularly impactful on students with disabilities who live in the intersection of other social determinants of health, such as poverty and racism. This SDOH predicts a child’s future success, employability, and even a potential future family’s success. Students with disabilities have a federally protected right to receive a free appropriate public education. A team approach is required not only in special education law but is necessary for an effective intervention plan. For students with health conditions that result in disability, the school nurse is an essential member of the IEP team with the knowledge and skills necessary to mitigate the impact of health problems on access to a FAPE. School nurses employ a variety of tools to provide nursing care in schools, promote educational access, and advocate for social justice.
Disability support for students is an investment in the future of America.Patricia’s access to her school nurse and special education services led to her success as a financially independent adult. The federal statutes that drove the care delivered by the school district through accommodations in her IEP made it possible for her to attend school safely, enjoy social experiences with peers, and progress academically through graduate school. All of this came to fruition through a team approach to support students with disabilities at school. Such collaboration allows millions of students across the US to grow into adults who have “develop[ed] their talents, share[d] their gifts, and contribute[d] to their communities” (U.S. DOE, 2022b, p. 1). Disability support for students is an investment in the future of America.
Kathleen Johnson, DNP, RN, NCSN-E, PHNA-BC, FNASN, FAAN
ORCID ID: 0000--0002-1890-250X
Kathleen "Katie" Johnson has a doctorate in population health nursing and has been the beneficiary of four fellowships: Robert Wood Johnson Executive Nurse Fellow, Johnson & Johnson School Health Fellow, and recognized as a Fellow in the National Academy of School Nursing and the National Academy of Nursing. She is a long-time school nurse serving at every level from direct care to management of the state's largest school health services department to Interim State School Nurse Consultant to teaching school nursing. She is currently affiliate faculty at the University of Washington Child, Family, and Population Health Nursing Department, and Mentor Faculty for the Beginning Educator Support Team at the Office of the Superintendent of Public Instruction both of which allow her to indulge her passion as an advocate for strong school nursing support for students.
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