The Journal of School Nursing2024, Vol. 40(1) 108–118© The Author(s) 2022Article reuse guidelines:sagepub.com/journals-permissionsDOI: 10.1177/10598405221105054journals.sagepub.com/home/jsn
Children with disabilities or specialized healthcare needs were legally excluded from U.S. public education for decades, but in the last 45 years, they have gained tremendous ground in receiving comparable educational opportunities as their non-disabled peers. The purpose of this article is to provide a historical review of the educational laws which affect children with disabilities, so that school nurses who work with these children understand the impact of these laws and the resulting changes in school nursing practice. Review of the United States’ educational history provides school nurses the working background necessary to recognize their key role to support the education of children with disabilities and to advocate for these children’s educational rights with their parents, school officials and policy makers.
education, children with disabilities, specialized health care needs, school nursing
The history of education for children in the United States has a long pattern of only including children who possessed a clear and easily predicted pathway to success. Although Brown v. Board of Education (1954) was a landmark case mandating education equality for children of all races, this court decision did not mention children with disabilities. Consequentially, many states’ education laws specifically prohibited children with disabilities from even enrolling in public schools (U.S. Department of Education, [DoEd] 2020). Prior to 1973 (Figure 1), federal educational laws for those with disabilities were passed, but without federal funding or guidance to support them and without identified consequences for non-adherence. Over time, education laws and court decisions expanded the right to public educational opportunities for all children, including those with disabilities. School districts struggled to include children with specialized medical, developmental, or psychological needs within the general education system. This struggle impacted school nurses, who had to expand their role to provide nursing assessments and care for children with specialized healthcare needs.
The authors will analyze how these legal changes unfolded historically and the importance of school nurses to ensure children with specialized health needs are able take advantage of their legally entitled educational opportunities. Key educational laws and cases from 1954 to 2019 were researched using various primary and secondary sources. Sources included the websites of the U.S. Department of Education, U.S. Department of Civil Rights, National Association of School Nurses, and state education agencies including Illinois, Texas, and California. Court precedents were reviewed from the textbook, “Special Education Law and Practice” by Archer and Marisco. Court judgements of cited cases were examined from the Library of Congress. Disability rights attorneys were consulted for guidance. Additional sources included the New York Times, parent support web sites, and news and film documentaries (Willowbrook: The Last Great Disgrace; Unforgotten: 25 years after Willowbrook), to gain societal context surrounding the routine institutionalization of children prior to 1973.
This legal history was examined using a social history framework. Social historians examine events through the experiences of individuals or members of a group within society, rather than recounting events on a societal level (Breuilly, 1985). Using this framework allows today’s nurses to more fully grasp the educational issues these laws and court cases were trying to solve. Finally, the authors will examine the laws’ impact on school nursing practice and concerning national trends of a decreased presence of school nurses in schools to meet the specialized healthcare needs of children.
Prior to 1960, many children with disabilities were sent to live in state residential institutions (US Department of Education [DoEd], 2020). Neither the federal nor state governments provided resources for families to take care of children in their home community (DoEd, 2020). Parents were legally prevented from enrolling a child with disabilities in school. One of the earliest cases reflecting parents’ legal struggle to obtain a public education for their child occurred in Beattie v Board of Education of Antigo (1919). The parents of the child with disabilities brought a lawsuit against the Antigo school district, demanding that their child be allowed to enroll in school. The school district administrators refused to enroll their child because of his “unclean appearance” and the child’s “nauseating effect on the [other] children and teachers.” The court supported the school district’s decision by upholding the child’s restriction from school (Archer & Marisco, 2017, p. 6; Beattie, 172 N.W. 153).
During much of the twentieth century, American society in general deemed that the ‘proper’ response to children perceived as ‘different’ was to remove them from their home and community entirely. Geraldo Rivera (Meskell & Fisher, 1997) revealed the coercive tactics and pervasive societal pressures exerted on parents to send their children away in the documentary, “Unforgotten: 25 years after Willowbrook.” One mother stated, “everyone said to do it [send her daughter away]. Your priest, your family, your doctor, the schools.” Parents were pressured to institutionalize their children in state-run residential facilities. After their child was housed in the facility, parents would then often be denied their parental rights to visit their child. Prior to being admitted to the facility, the children did not necessarily have an appropriate placement evaluation of their developmental or physical issues; some merely looked like they might be disabled, as in the case of Bernard Carabello (Rivera, 1972). Bernard was admitted by his family to the Willowbrook State school and described as “retarded.” Upon assessment 18 years later, Bernard was found to have no intellectual disability at all. During the 1970’s and earlier, children were often officially diagnosed as “retarded” for any condition that made them different, whether it was Down’s syndrome or hearing loss (Meskell & Fisher; Rivera). Because children with disabilities were often removed from their communities and not enrolled in school, they were without access to education and the support of their families.
Starting in the late 50’s, Congress passed a few federal laws aimed to improve the dim future of children with disabilities (Figure 1). The Training of Professional Personnel Act of 1959 (Public Law 86-158, hereinafter “Public Law” will be referred to as “PL”) was enacted by Congress to train leaders to teach the teachers of “mentally retarded” children (DoEd, 2020). President Kennedy signed the Mental Retardation Facilities and Community Mental Health Centers Construction Act of 1963 (PL 88-164) into law. The goal of the Act was to create “University Centers for Excellence” for developmental disabilities education and research. However, funding for these centers was delayed until 1970 - seven years later. Similarly, the Elementary and Secondary Education Assistance Act of 1965 (PL 89010) and the Handicapped Children’s Early Education Act of 1968 (PL 92-424) were enacted to provide education and early childhood programs for the disabled (DoEd, 2020). These initiatives were also enacted without funding appropriations needed to execute them. As a result, states were totally financially responsible for determining how to achieve the ideals and goals within these new federal laws.
Collectively, these earlier laws were viewed as something “nice” to achieve, if a state or school had the funding to carry them out, adequate staff and inclination to include children with disabilities. Few schools had this mindset. In 1970, only one out of five children with disabilities were enrolled in public schools (DoEd, 2007). Because these children were not enrolled in school, the school nurses were unable to provide assessments, recommendations, or care that these children may have needed to attend school and benefit from a public education.
However, three events occurred in the early 1970’s that prompted Congress to pass education laws with both appropriate funding and guidelines: (1) the court case of the Pennsylvania Association for Retarded Citizens v. Commonwealth of Pennsylvania (1971), (2) court case of Mills v Board of Education of the District of Columbia (1972), and (3) ABC News’ television expose of New York’s Willowbrook State School (Rivera, 1972). The laws enacted by these events changed the trajectory of these children’s educational opportunities.
The court decisions of Pennsylvania Association for Retarded Citizens v. Commonwealth of Pennsylvania (1971) and Mills v Board of Education of the District of Columbia (1972) challenged state laws that prevented children with disabilities from enrolling in public schools. Historically, Brown v Board of Education (1954) established a legal foundation that all children deserve equal quality education. However, the Brown ruling was silent on whether the decision included children with disabilities. Subsequently, many states such as Pennsylvania, New York, and the District of Columbia, specifically excluded children with disabilities from receiving public education (Moody, 2012). The Pennsylvania law stated if a child did not perform at the required level, then that child was “unable to profit from public school attendance,” and therefore not permitted to start or continue attending public schools (Moody, 2012). In Mills v Bd. of Ed. D.C. (1972), children were initially allowed to attend public school, but were permanently expelled as young as third grade for “behavior problems” or “wandering the classroom” by school principals. The expulsions occurred without parental input or recourse and without a formal meeting to discuss the decision (Archer & Marisco, 2017).
Though the state actions were different in both cases, the outcomes were the same: children with disabilities were systematically denied the educational opportunities provided to children without disabilities. The Supreme Court recognized these inequities and ruled in both cases that children with disabilities have the same protections, rights and access to due process as children without disabilities possess to receive public education as stated by the 14th Amendment of the U.S. Constitution (DoEd, 2007). Though the Supreme Court ruled that children with disabilities must be given the same access to education and due process as other children, their decision did not establish the level of education a child with disabilities has the right to receive (DoEd, 2007).
In 1972, ABC News televised a special news report from journalist Geraldo Rivera, “Willowbrook: The Last Great Disgrace.” The broadcast revealed the atrocities and complete lack of education offered to children housed within New York’s Willowbrook State School. Rivera’s reporting showed children without clothing, who were uneducated, and malnourished due to a lack of feeding assistance. Many of the children were also used for medical experiments without parental consent. According to Rivera, children were placed there and declared “mentally retarded” for any disability that made them different, including blindness, deafness or cerebral palsy (Rivera, 1972). During the filming of the report, Rivera interviewed Bernard, a 21-year-old man, who had been placed in Willowbrook State School at age three. Bernard had received less than five years of schooling during his 18-year residency, though he did not have a learning disability. Bernard was born with cerebral palsy and earned a high school diploma and college degree after his release from Willowbrook. Rivera’s 1972 report brought the horrific plight of institutionalized persons directly into people’s homes with videos and interviews of the residents. The revelation of the living conditions for these children and adults appalled the public and lawmakers alike and enraged the family members who had entrusted the state to care for their disabled loved ones (Meskell & Fisher, 1997).
These three events prompted broad changes in federal education laws (Figure 2). The Developmental Disability Act of 1963 (PL 106-402) was re-authorized in 1975 to highlight the right of people with disabilities to be educated in the “least restrictive setting.” Additionally, people with disabilities had the right to use “common” community resources, which meant they should not be segregated to another facility but allowed use of the community school (DoEd, 2020). Two important laws enacted were the Rehabilitation Act of 1973 (PL 93-112) and the Education for All Handicapped Children Act (EHA) of 1975 (PL 94-142), which reinforced the rights of persons with disabilities. The Rehabilitation Act, Section 504, specifically declared that no one can be denied access to or the benefits of any federally funded program, which included public schools (DoEd, 2010). The EHA of 1975 authorized financial incentives to enable states to comply with the EHA’s four purposes related to children with disabilities: (1) they have a right to a free and appropriate public education and related services designed to meet their unique needs, (2) protected the children and their parents’ rights, (3) to assist state governments to provide for the free and appropriate education and (4) to assess and assure the effectiveness of the education efforts for children with disabilities (DoEd, 2020). Critics, including President Ford, denounced the bill’s lack of financial funding and the lack of direction of whom - the states or the federal government- would implement these policies (Moody, 2012).
The United Federation of Teachers union strongly opposed to the new laws (Moody, 2012). Albert Shanker, the United Federation of Teachers union president, placed an advertisement in the New York Times in 1977. In the ad, Shanker (1977) stated parents should prepare for their children to see other children with “holes in their hearts, who turn blue and have water on their brain with tubes draining off the excess water,” (Moody, 2012). Shanker commented few teachers had special education training, but the laws meant almost all teachers would have these children in their classrooms (Moody, 2012). However, Shanker’s advertisement was reminiscent of the Beattie (1919) decision that children (and teachers) would suffer a ‘nauseating effect’ by simply seeing children with disabilities in schools.
The Education for All Handicapped Children Act of 1975 required future studies to determine the effectiveness of the education efforts (DoEd, 2020). The Department of Education conducted a follow-up study to determine why the education benchmarks for children with disabilities were not being met, and to measure the effectiveness of the teaching methods being used for children with disabilities (DoEd, 1981; Moody, 2012). This study found that despite spending tremendous amounts of money, the states were struggling to implement and adhere to the new law. Most children with disabilities were either separated from regular classrooms or were placed in regular classrooms with no changes in the class processes to accommodate their learning needs (Moody). Their educational attainment level was essentially unchanged (Moody).
Several amendments and revisions of education laws have taken place over the years. The Education for All Handicapped Children Act of 1975 was re-authorized and renamed to the Individuals with Disabilities Education Act (IDEA) in 1990. IDEA (1990) provides federal educational funding for children with specialized needs, and states who accept these funds must provide a free and appropriate public education in the least restrictive environment possible for all children with disabilities. IDEA (1990) was amended in 1997 to grant children with disabilities access to the general curriculum, rather than a substitute (and substandard) curriculum compared with their non-disabled peers (DoEd, 2020). IDEA (1997) was amended in 2004 to require use of evidence-based teaching methods in special education (DoEd, 2020). In 2017, the phrase “mentally retarded” was changed to “intellectually disabled” within IDEA (DoEd, 2020). Between 1980 and 2017, the Supreme Court made several judicial decisions that further impacted educational laws regarding children with disabilities (Figures 2 & 3) as discussed below.
Two Supreme Court decisions in the 1980’s provided schools with direction about requirements to meet the legal obligation for educating children with disabilities under the Education for All Handicapped Children Act (EHA) of 1975. These Supreme Court cases challenged the prior educational standards of 1970’s ofsimplygranting accesstoeducationbyallowing children with disabilities to enroll in public school. The rulings from Hendrick Hudson District Board of Education v. Rowley (1982) and Irving Independent School District v. Tatro (1984) determined that schools must provide the services which allow children with disabilities to both physically attend school and benefit from school’s instruction.
The first education disability case to reach the Supreme Court after the enactment of EHA of 1975 was Hendrick Hudson District Board of Education v. Rowley (1982). Rowley (1982) asked the Court to address the level of education and specialized education services that a child with a disability had the right to receive. The school wanted a deaf child, Amy Rowley, to use a hearing aid and speech therapy during the classroom, instead of providing a sign language interpreter for her. An independent educational evaluation found a large learning discrepancy between when Amy had an interpreter versus what she learned when lip-reading. Amy’s parents wanted Amy to have the services which would maximize her education potential, a sign language interpreter. However, Amy was capable of lipreading well enough to pass her classes without an interpreter.
In H.H. D. Bd of Ed v. Rowley (1982), the Supreme Court agreed with the school regarding Amy’s interpreter and denied her parents’ request. Because Amy was able to compensate with her lip-reading to receive “adequate” educational benefit in the form of passing grades, the Supreme Court rejected the parents’ argument that Amy was due the best accommodations possible (Archer & Marisco, 2017). The Supreme Court found Amy’s education was adequate, as demonstrated by her educational advancement.
In the same judgement, the Rowley Court (1982) provided school districts with instruction that simply enrolling children with disabilities would not meet their legal educational obligation to these children. Supreme Court Justice Rehnquist wrote many children with disabilities “were excluded completely or were sitting idly in a classroom until they were old enough to drop out,” and the laws were written to stop this “frequent scenario” (Rehnquist, 1982, p. 179). The Supreme Court ruled that children with disabilities are not entitled to every possible accommodation and service in the name of education (Archer & Marisco, 2017). However, the Supreme Court also stated a school must provide the specialized instruction or provisions a child with disabilities requires so the child can actually benefit from the school’s instruction (Archer & Marisco). Furthermore, this level of benefit should “commensurate with the opportunity provided to other [non-disabled] children” (Archer & Marisco, 2017, p. 43).
In Irving Independent School District v. Tatro (1984), the Supreme Court heard the case of a child who needed specialized health care services due to a birth defect. Amber Tatro was born with spina bifida, which required urinary catherization to relieve her bladder during the day so she could attend school. Amber’s parents requested that the school provide this catheterization during the school day and provided a written prescription for the procedure to be done at specific times from Amber’s physician. Irving Independent School District argued providing this catheterization would require hiring a physician to perform this task at great cost, and therefore refused to allow her enrollment in school. Amber’s family argued the procedure did not require a physician to perform the catheterization but that a school nurse could complete the catheterization. The EHA (1975) required school districts to pay for the “health-related services” a child with disabilities needs to receive their public education, unless those services are deemed to be “medical services” (Archer & Marisco, 2017, p. 96).
Tatro v. State of Texas (1979) sought to determine if a clean, intermittent catheterization, prescribed by a physician, was a “medical service” which must be performed by a physician, or a health service which could be performed by a nurse or trained person with the appropriate direction, equipment, and written prescription. Calling parents “hostages of fate,” the Texas District Court agreed with the school district (Tatro v. State of Texas, 1979). The District Court stated the ‘related services’ of special education services needed to be directly tied to educational needs. The District Court wrote, “Catheterization would need to be done regardless of [whether] the child was in school, and therefore [catheterization] did not enhance her ability to learn,” (Cornell, n.d.). The 5th Circuit Court reversed this decision. The Circuit Court ruled catheterization was related to education because Amber could not attend school without it, and therefore part of her ‘special education services.’ The school district appealed to the Supreme Court (Irving Indep. Sch. Dist. v. Tatro, 1984). The Supreme Court noted Amber’s parents, babysitter, and teenage brother all performed the catheterization at home, and Amber would self-catheterize when she was older. Therefore, the Supreme Court found the catheterization was not a specialized process restricted only to physicians, and that the school must provide school nursing services to perform the procedure so Amber could attend school (Cornell, n.d.).
Performing a straight catheterization every three hours is a limited nursing task, but the case of Cedar Rapids Community School District v. Garret F (1999) addressed the educational rights of children with highly complex healthcare needs. Garret sustained a severe spinal cord injury due to a motorcycle accident at age four and needed total supportive care so he could attend school. His mental capacities were normal, but he had no motor function below his neck. He could speak but utilized a “puff” straw operated wheelchair, and a computer that responded to his head movements. Garret’s injuries also meant he required a ventilator, so he needed a constant attendant to attend to him and ensure the ventilator attached to his wheelchair functioned correctly. Unlike Amber’s twice daily, 15-min procedure, Garret required continuous one-on-one attending care (Archer & Marisco, 2017).
Like Tatro (1984), Garret (1999) had no mental disability and was successful in school, despite his physical handicaps. Garret’s first attendant in kindergarten was his 18-year-old aunt. She did not adjust any settings on the ventilator, but simply monitored for mechanical issues such as blockages, kinks, proper battery power/electricity, etc. Garret’s family provided an attendant for Garret during his first 5 years of schooling, but then requested this service to be provided by the school district.
The EHA of 1975 had been re-named to IDEA in 1990. Both EHA (1975) and IDEA (1990) required school districts to pay for the ‘related services’ surrounding special education that a child required to attend and benefit from school unless the service was deemed ‘medical.’ Examples of excluded medical services would be a surgical procedure or dialysis. Garret’s attendants did not make any ventilator adjustments but monitored for potential mechanical problems.
The legal issue before the Court was not whether Garret’s care required a physician, but that the total cost of Garret’s care was too high for the school district to bear (Archer & Marisco, 2017). In a 7-2 decision, the Garret Court declared that IDEA of 1990 does not require school districts to provide the most optimum care possible (as when the Court denied Amy Rowley’s sign language interpreter request). However, the Supreme Court stated IDEA of 1990 does not allow school districts to cite financial concerns as the sole reason to deny a child an education in the community school (Archer & Marisco). In other words, just because a service is continuous and costly (such as an attendant), does not mean the service is now an excluded, physicianprovided ‘medical service.’ Therefore, the Supreme Court found the school district must provide a one-to-one trained attendant so Garret could attend school. The cases of Tatro (1984) and Garret (1999) established the school’s obligation to provide the healthcare services which permit children with physical disabilities to attend school. School nurses provide valuable assessment, care, training and clinical advice to schools with similar children to ensure children with specialized healthcare needs are physically able to attend and benefit from a public education in a safe and efficient manner.
When the Supreme Court banned school segregation based on race in Brown v. Board of Education (1954), a major consideration was the justices’ view of the negative effect of segregation itself, even if two schools appeared “equal” in every tangible detail. Chief Justice Warren wrote the Brown landmark opinion of the Court:
“Education is perhaps the most important function of state and local governments…It is doubtful that any child may… succeed in life if he is denied the opportunity of an education…. The policy of separating races is usually interpreted as denoting inferiority, which affects the motivation of a child to learn…Separate educational facilities are inherently unequal.”
The Supreme Court justices recognized the great stigmatization, externally and internally, that occurred to children educated in segregated schools. Similarly, children with disabilities suffer the same stigmatization when they are placed in segregated learning environments, instead being educated alongside peers without disabilities.
The stigma of segregation re-surfaced with the Supreme Court decision of Olmstead v. L.C. in 1999 (U.S. Department of Justice, Civil Rights Division, [DOJ], n.d.). Lois C. had a history of mental illness and developmental disabilities and voluntarily entered the psychiatric unit of the state-run Georgia Regional Hospital. Despite mental health professionals declaring Lois was stable and ready for release to community-based care, Lois was involuntarily institutionalized for several years by the state of Georgia. The Supreme Court ruled Lois was unjustly segregated from society by the state of Georgia’s refusal to release her, and the “institutional placement of persons who can handle and benefit from community settings perpetuates… assumptions that persons…are incapable of or unworthy of participating in community life,” (DOJ, n.d.). Georgia’s state actions continued the stigma that persons with mental illness are not ‘safe’ for the public, which also affects students with mental illnesses. this decree extended to the unjustified segregation of disabled students from nondisabled students.
In 2016, the state of Georgia was again accused of unjust segregation of those with mental disabilities, by segregating children with disabilities to disability-only schools (DOJ, 2021). In an investigation and subsequent lawsuit filed by the Department of Justice, the Georgia Network for Educational and Therapeutic Support program was segregating children with disabilities into specific centers, where they were separated from non-disabled peers completely. These were routinely called “psycho-ed centers,” did not have access to the general education curriculum and were located far from the homes and communities of the students. The buildings used by the centers were former schools for Black children during America’s racial segregation era and were in dilapidated condition (DOJ, 2021). This continuing court case demonstrates children with disabilities are still experiencing isolation and segregation on an institutional level.
The state of West Virginia is another recent example of a statewide policy enforcing segregation of children with disabilities. The U.S. Department of Justice/Civil Rights Division investigated West Virginia’s practices of routinely sending children into institutions, especially those with emotional or behavioral disorders (DOJ, 2019). West Virginia did not have community-based resources for mental health or supportive plans in schools for children with mental or developmental disabilities, so these children were routinely institutionalized, often hours away from their home (DOJ, 2019). The investigation resulted in an agreement which required West Virginia to create high quality and timely community treatment options across the state, both in-home and community based (DOJ, 2019). Furthermore, West Virginia must ensure the only children placed in a residential facility have been evaluated by a mental health care professional who determined that this child’s specific needs can only be met in a residential setting (DOJ).
Parents may not understand their child cannot be placed in a residential setting for the benefit of the school system; their child’s specific needs must be such that a residential setting is required for the child’s benefit. School nurses’ role as advocates for children and their families means they are in an optimum position to educate the parents of children with disabilities about these children’s right to be educated in their home communities and amongst their peers and neighbors. School nurses’ specialized knowledge could provide valuable insight for the creation of community-based interventions for children with special needs so these children can attend and progress at school.
In Endrew F. v Douglas County School Board (2017), the Supreme Court established a disabled child’s individualized education plan must be meaningful and plan for significant progress for that child’s capabilities. Prior Supreme Court cases of Rowley (1982), Tatro (1984) and Garret F. (1999) involved students who had normal mental development and normal learning abilities. The case of Endrew F. (2017) involved around a child with autism who had been given the same Individualized Education Plan (IEP) from kindergarten through the 4th grade, with minimal or no changes in his educational goals from year to year. Annual educational goals included teaching Endrew to count from one to 10, and this counting goal was repeated for four consecutive years. When the school offered the same IEP for 5th grade, the parents transferred Endrew to a private school, where he made great academic strides (DOJ, 2021). The parents then sued the school district, arguing that Endrew did not receive meaningful, progressive education within the public school.
Although lower courts ruled a school’s obligation was met if any educational progress had occurred (such as increasing counting ability from one to 10 to counting from one to 12 over the course of a school year), the Supreme Court disagreed. The Endrew Court (2017) ruled “each child must have an Individualized Education Plan designed to make progress” which accounted for the child’s individual capabilities (DOJ, 2021). This judicial decision opinioned that an educational plan with no progress or trivial progress was not adequate under the law. Although the Endrew (2017) case referred to educational progress, this decision impacts the goals and progress of other IDEA-related healthcare needs, such as self-management of diabetes or asthma, where school nurses should be involved in the creation and implementation of the student’s Individualized Education Plan.
There is no doubt that great educational strides have been made for children with disabilities in the last 50 years. There are no recorded graduation rates of children with disabilities prior to the EHA of 1975. In 1970, only 20% of children with disabilities had ever attended school, and far fewer graduated high school (DoEd, 2020, para. 2). Of the children with disabilities that ended their schooling in 1995, 63% graduated high school with either a diploma or GED (|DoEd, 2020, 1980s and 1990s section). However, 34% of children with a disability dropped out of school that year. By the 2019 school year, 73% of children with disabilities completed their schooling with their high school diploma, and only 16% dropped out of school (|DoEd, 2020, 2000s and 2010s section).
Other notable improvements have occurred for children with disabilities due to the changes in education laws discussed in this article. Children with disabilities are now included in the general education classroom on a regular basis: 64% of children with disabilities were learning in the general education classroom more than 80% of their school day (DoEd, 2020, para. 4). In 1997, IDEA was amended to include requirements for transition planning from high school to adult life (DoEd, 2007). Children who received benefits under IDEA of 1997 are more likely to be employed or attend college after high school. According to the Department of Education, employments rates of children with disabilities have doubled, and post-high school enrollment rates have tripled since 1978 (DoEd, 2007). The improved outcomes for children with disabilities related to access to educational opportunities are astonishing.
The evolution of how America educates children with disabilities demonstrates the vital importance of school nurses in the educational system. Prior to 1984, children with specialized health needs were often forbidden to attend public schools, and school nursing practice did not address these students’ healthcare needs. As demonstrated by Tatro (1984) and Garret F. (1999), children with disabilities may have complex physical needs, requiring the physical presence and support of school nurses so the child can take advantage of educational opportunities by attending school. School nurses themselves need ongoing educational support to ensure they can meet these children’s needs appropriately. The National Association of School Nurses’ position statement outlines the impact of school nurses for children with specialized needs: “School nurses are the link between healthcare and educational communities,” and are “essential to determine the impact that health conditions have on learning” (2018). According to Yonkaitis and Shannon (2017), school nurses, as qualified health experts, are important members of the special education team to ensure compliance to IDEA (1997). However, school nurses need adequate training to understand and carry out the responsibilities outlined in IDEA (1997).
Nationwide, only 39% of public or private schools employ full-time school nurses, and 25% of schools do not employ a school nurse at all (Willgerodt et al., 2018). Nurses are employed either full-time or part-time by 81% of public schools in the U.S. (Willgerodt et al.). There are no federal laws requiring nurses in schools; therefore, the distribution of nurses in schools varies across the U.S. States’ regulations have a wide variability on school nurse staffing models. In Illinois for instance, school nurses are required to have a baccalaureate degree, certification in school nursing and complete a 300-h internship program (Illinois Association of School Nurses, 2020). However, Texas only recommends at least one registered nurse (RN) to oversee a school health program. Any licensed vocational nurse or unlicensed staff can provide the healthcare. There is no additional required education for the RN (Hoover & Dooley, 2019). The lack of standardization of school nurse education and staffing could create inconsistent care of children with complex healthcare needs.
The National Association of School Nurses (2022) recommends that all students have direct access to a registered nurse. The western region of the U.S. has the lowest number of fulltime nurse employees (39.8%) and 30% of western schools have no paid nursing staff at all (Willgerodt, et al.). The northeast region has both the highest number of full-time nurses and lowest number of schools without nursing coverage, 80.7% and 5.7% respectively (Willgerodt et al.). In a state such as Texas, which does not require school districts to employ nurses, there are 6,100 full-time nurses to cover 8,000 schools (Swaby, 2021). In districts or individual schools without a nurse, the administrative staff provided the children’s healthcare needs.
The number of school nurses is outpaced by the increasing number of children with disabling health impairments in schools. As school nursing resources are stretched thin or are simply absent in some school districts, vulnerable children with specialized needs will not have the needed support to progress in school. The National Center for Education Statistics [NCES] stated 78% of public schools employed at least 1 part-time or full-time nurse in 2007, and this grew to 82% of schools by 2016 (2020). The most recent estimate of full-time public-school nurses was 86,500 (Willgerodt et al., 2018). However, children needing special education services has grown much more rapidly. In 2009, approximately 6.5 million school children were identified as receiving special education services. By the year 2019, this number grew to 7.3 million (NCES, 2021). Of these children, 15% were listed as having an identified “health impairment” as their identified disability – a total of 1.1 million children (NCES, 2021). These numbers do not include the obligations school nurses have for the remaining children without identified special needs.
Some school districts or regional officials may not agree with the rights of children with disabilities to receive education in the general school system. One example is from The Texas Guide to School Health Programs (Texas Department of State Health Services, 2009):
There is increasing pressure to serve more students in regular classrooms, a movement known as ‘inclusion.’…Under inclusion, regular education is expected to change in significant ways so that all or most of the individual student’s special needs are met in the context of the regular classroom. …. It cannot be overstated that regular education has great difficulty accommodating students with special learning needs. The majority of students served under IDEA were referred to special education because their regular classroom teachers were not able to deal with their chronic academic and/or behavioral problems…Research does not make a compelling case either for or against inclusion (p. 352).
In response, parent networking groups may inform parents of potential bias toward students with special needs. “Services once rare or thought to be clearly outside the responsibility of schools are legally mandated by state and federal statutes for all children who need them. However, some school staff may not know this or agree with this,” [emphasis added] (Partners Resource Network, n.d.). According to Dalton (2002), exclusion through isolation is still quite common, and parents and school districts struggle with the concept of determining how much educational benefit is enough benefit. The recent investigations of Georgia (2016) and West Virginia (2019) demonstrate systemic exclusion of special needs children still occurs in some regions. Children with disabilities often require more equipment and support staff in schools than children without disabilities. Though school nurses are knowledgeable, skilled and capable of providing these children’s complex healthcare needs, they must also be knowledgeable of these children’s legal rights to a public education. Thus, attaining this information provides school nurses with empowering tools to advocate on behalf of these children by bridging potential communication gaps between parents, school officials and policymakers.
Children with disabilities hold the same rights and protections as children without disabilities for a free, public education in the United States. Furthermore, a child with disabilities should have a comparable level of educational opportunity to learn and advance educationally as does a child without disabilities. The long history of educational exclusion in the U.S. has spanned various groups of children, including those who were of an undesirable race or presented with a different physical appearance, health status or cognitive ability. Children with disabilities are entitled to a public education that is meaningful and free from the stigma of isolation and segregation as much as possible.
This article outlined the major legal landmarks of the pathway to free, appropriate public education for children with disabilities. Tremendous progress has been made for these children, in terms of academic success and inclusion in society. However, there continues to be struggles to adequately educate children with disabilities in different regions of the U.S. School nurses play a vital role in supporting the educational goals of children with specialized health needs. School nurses’ presence and involvement with these children allows the children to take advantage of public educational opportunities. School nurses benefit from understanding the history of laws pertaining to the educational rights of children with disabilities so they may better advocate for these children’s special needs and educational rights. School nurses are vital partners with parents, school administrators, teachers, and policymakers, so the educational goals, legal mandates, and ideals of the United States can be met for all of America’s children.
The authors express gratitude to Lucy Wood, JD, Clinical Professor and Director, Disability Rights Clinic, Texas Law, for her support and encouragement while researching this paper. We also thank the Administrators in the School of Nursing PhD (GNRS) Graduate Program for their support.
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Michelle L. Nighswander https://orcid.org/0000-0003-1525-9712
Patricia A. Blair https://orcid.org/0000-0001-5281-1612
Archer, D. N., & Marisco, R. D. (2017). Special education law and practice: Case and materials. Carolina Academic Press.
Beattie v. Board. of Educ. of Antigo (Wis. 1919). State ex rel. 169 Wis. 231, 172 N.W. 153.
Breuilly, J. (1985). What is social history? History Today. Retrieved on May 16, 2022, from https://www.historytoday.com/archive/what-social-history
Brown v. Board of Education (1954). 347 U.S. 483, 74 S.Ct. 686, 98 L.Ed. 873, 38 ALR2d 1180.
Cedar Rapids Community School Dist. v Garret F. (1999). 526 U.S. 66, 119 S.Ct. 992, 143 L.Ed.2d 154.
Cornell Law School (n.d.). Legal Information Institute: Irving Independent School District, Petitioner v. Henri Tatro, et ux., individually and as next Friend of Amber Tatro, a minor. Retrieved on August 10, 2021, from https://www.law.cornell.edu/supremecourt/text/468/883
Dalton, M. A. (2002). Education rights and the special needs child. Child and Adolescent Psychiatric Clinics of North America, 11(4), 859–868. https://doi.org/10.1016/s1056-4993(02)00021-4
Endrew F. v. Douglas Cnty (2017). Sch. Dist. Re-1, 137 S. Ct. 988.
Hoover, C., & Dooley, K. (2019). Health Services Staffing. Texas Association of School Boards. Retrieved on May 5, 2022, from https://www.tasb.org/services/hr-services/hrx/hr-laws/health-services-staffing.aspx#:∼:text=An%20RN%20must%20hold%20an,and%20hold%20an%20LVN%20licensure.
Hudson District Board of Education v. Rowley (1982). 458 U.S. 176, 206-07, 102 S.Ct. 3034, 3050-51, 73 L.Ed.2d 690.
Illinois Association of School Nurses (2020). Licensure/Endorsement. Retrieved on May 5, 2022, from https://www.iasn.org/licensure-endorsement/.
Irving Independent School District v. Tatro (1984). 468 U.S. 883, 104 S.Ct. 3371, 82 L.Ed.2d 664.
Meskell, K. (Producer), & Fisher, J. (Director) (1997). Unforgotten: Twenty-Five Years after Willowbrook. [Documentary]. United States.
Mills v. Board. of Education of D. C. 348 F. supp. 866 (D.D.C. 1972).
Moody, A. (2012, May 3). The Education for All Handicapped Children Act: A Faltering step towards integration. Published from Trinity College by Creative Commons Attribution. Retrieved on August 10, 2021, from https://commons.trincoll.edu/edreform/2012/05/the-education-for-all-handicapped-childrenact-a-faltering-step-towards-integration/#content
National Association of School Nurses (2018, January). IDEIA and Section 504 teams- the school nurse as an essential team member [Position statement]. Retrieved from https://www.nasn.org/advocacy/professional-practice-documents/position-statements/ps-ideia
National Association of School Nurses (2022, January). Student access to school nursing services [Position Statement]. By C. Yonkaitis, A. Dark, L. Compton, & K. Haynie. Retrieved on March 31, 2022, from https://www.nasn.org/nasn-resources/professional-practice-documents/position-statements/ps-accessto-services
National Center for Education Statistics (2020). School nurses in U.S. public schools. Data Point. U.S. Department of Education, Institute of Education Science. Retrieved on February 25, 2022, from chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/viewer.html?pdfurl=https%3A%2F%2Fnces.ed.gov%2Fpubs2020%2F2020086.pdf&chunk=true
National Center for Education Statistics (2021). Students with disabilities. U.S. Department of Education, Institute of Education Sciences. Retrieved on February 22, 2022, from https://nces.ed.gov/fastfacts/display.asp?id=64
Olmstead v L.C. (1999). 527 U.S. 581, 119 S.Ct. 2176, 144 L.Ed.2d 540.
Partners Resource Network (n.d.). What is the role of the school nurse in dealing with students with disabilities? PRNTexas.org. Retrieved on August 10, 2021, from https://prntexas.org/what-is-the-role-of-the-school-nurse-in-dealing-with-students-withdisabilities/
Pennsylvania Association for Retarded Children v. Pennsylvania (E.D. Pa. 1971). 334 F. Supp. 1257, 1258.
Rehnquist, W.H. & Supreme Court of the United States (1982). U.S. Reports: Hendrick Hudson District Board of Education v. Rowley, 458 U.S. 176. Retrieved from the Library of Congress. https://www.loc.gov//item/usrep458176.
Rivera, G. (Writer) (1972). Willowbrook: The last great disgrace [Television special news report]. Skinner, S. (Producer), ABC Special Report.
Shanker, A (1977). Display Add 456- No Title. New York Times.
Swaby, A. (2021, March 18). School nurses have become crucial in battling the pandemic, but Texas doesn’t require districts to have them. The Texas Tribune. Retrieved from https://www.texastribune.org/2021/03/18/texas-school-nurses-coronavirus/
Tatro v State of Texas (1979). 481 F. Supp. 1224 (N.D. Texas). Retrieved on February 15, 2022, from https://law.justia.com/cases/federal/district-courts/FSupp/481/1224/2398080/
Texas Department of State Health Services (2009). Treatments and Care Plans: Special Education. In Texas Guide to School Health Programs. Texas Department of State Health Services. www.dshs.state.tx.us. Retrieved on August 8, 2021, from chromeextension://efaidnbmnnnibpcajpcglclefindmkaj/viewer.html?pdfurl=https%3A%2F%2Fwww.dshs.state.tx.us%2Fschoolhealth%2Fshpguide%2Fchap7.pdf&clen=178315
U.S. Department of Education (1981). P.L. 94-142: A study of the implementation and impact at the state level. Volume 1. Final report by Charles Blaschke. Education Turnkey Systems. Retrieved on March 30, 2022, from https://eric.ed.gov/?id=ED206151
U.S. Department of Education (2010). Free Appropriate Public Education for students with disabilities: Requirements under Section 504 of the Rehabilitation Act of 1973. Retrieved on February 25, 2022, from https://www2.ed.gov/about/offices/list/ocr/docs/edlite-FAPE504.html
U.S. Department of Education, Individuals with Disabilities Education Act (2020). A History of the Individuals with Disabilities Education Act. Retrieved on August 11, 2021, from https://sites.ed.gov/idea/IDEA-History#1975
U.S. Department of Education, Laws & Guidance. (2007). Twenty-Five Years of Progress in Educating Children with Disabilities through IDEA. Retrieved on March 30, 2022, from https://eric.ed.gov/?id=ED556111
U.S. Department of Justice (2019, June 19). Department of Justice celebrates 20th anniversary of the Olmstead Supreme Court decision protecting the rights of Americans with disabilities. Retrieved from https://www.justice.gov/archives/opa/blog/department-justice-celebrates-20th-anniversary-olmstead-supremecourt-decision-protecting
U.S. Department of Justice (2021, August 2). Case Summaries: Civil Rights Division. Retrieved on March 31, 2022, from https://www.justice.gov/opa/pr/justice-department-sues-georgiaunnecessarily-segregating-students
U.S. Department of Justice, Civil Rights Division (n.d.). Information and technical assistance on the Americans with Disabilities Act. Retrieved on August 10, 2021, from https://www.ada.gov/olmstead/olmstead_about.htm
Willgerodt, M. A., Brock, D. M., & Maughan, E. M. (2018). Public school nursing practice in the United States. The Journal of School Nursing, 34(3), 232–244. https://doi.org/10.1177/1059840517752456
Yonkaitis, C. F., & Shannon, R. A. (2017). The role of the school nurse in the special education process: part I: student identification and evaluation. NASN school Nurse (Print), 32(3), 178–184. https://doi.org/10.1177/1942602X17700677
Michelle L. Nighswander, MSN-Ed, RN, BC: Student, PhD in Nursing, Graduate School of Biomedical Sciences, University of Texas Medical Branch of Galveston, Galveston, Texas.
Patricia A. Blair, PhD, LLM, JD, MSN, CNE: Associate Professor, School of Nursing PhD (GNRS) Graduate Program, University of Texas Medical Branch of Galveston, Galveston, Texas.
Graduate School of Biomedical Sciences, University of Texas Medical Branch of Galveston, Galveston, Texas, United States
Corresponding Author:Michelle L. Nighswander, Graduate School of Biomedical Sciences, University of Texas Medical Branch of Galveston, Galveston, Texas, United States.Email: mnighswander28@gmail.com
