Chapter I.8. Disabilities and Physician Interactions with Schools
Kerri K. Niino
Jeffrey K. Okamoto, MD
August 2022

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Case 1. A 6 year-old girl named Zoe with a history of prematurity and spastic diplegia comes to the outpatient clinic for an annual review. She has no new acute medical symptoms. Zoe also sees an orthopedic surgeon and a physical therapist because of the spastic diplegia. She ambulates with ankle-foot orthoses (braces) and does not require a wheelchair. She requires help when using stairs.

Her mother relates that Zoe is happy in her public school but does not participate in art class. This art class is on the second floor of one of the school buildings which does not have an elevator. There are no school personnel to help Zoe get to the second-floor classroom. Therefore, Zoe has an extra reading period instead of art since she needs continued help with reading (where she is in special education). Zoe is in regular education placement for all her classes except for the resource classroom placement for reading. She is therefore in the resource classroom two periods every day. Her mother wishes that Zoe could participate in art as do all of Zoe's classmates.

On exam Zoe is a happy child without outstanding findings except for hyperreflexia of her patellar deep tendon reflexes, and the ankle foot orthoses that she wears bilaterally. Her ankles can be positioned past neutral passively. She enjoys drawing pictures of her family in the clinic.

Case 2. Larry, a 4 year-old child, is diagnosed with Prader-Willi Syndrome confirmed on genetic testing after presenting with hyperphagia, developmental delays, and pneumonia. Larry was previously evaluated for hypotonia as an infant, without any etiology being found. Larry is referred for special education services, but his family finds that the school wants to wait until kindergarten next year to place him into regular education to determine if he can do well in that setting.

Medical and school personnel have similar interests and goals. Physicians and other health personnel are focused on child health. Teachers and other school personnel are focused on child education. Both fields are child-centered, include interaction with families, aim to optimize the child’s potential, and want to minimize problems by addressing minor problems early before they worsen.

Both physicians and educators also deal with a range of children – from mildly to severely affected. Some children have both medical and educational issues, such as Zoe who was described in the case. She has cerebral palsy, but also a learning disability in reading. Some conditions overlap the medical and the educational worlds. A good example is attention deficit hyperactivity disorder (ADHD). This condition not only has a major impact on school behavior and performance, but also requires medical attention because of diagnostic and treatment needs.

Other examples with overlapping medical and educational issues include intellectual disability, autism spectrum disorder (ASD), mental health problems, visual impairments, and hearing impairments. A child such as Larry has intellectual disability most likely due to Prader-Willi Syndrome, a genetic condition. Increasingly, genetic conditions have been diagnosed in pediatrics, secondary to advances in genetics, including the use of technologies such as microarrays and now, whole exome sequencing. These genetic conditions are sometimes associated with intellectual disabilities, ASD, or learning disabilities.

Children who are not developmentally or physically disabled but whose medical conditions can have effects on school performance include children with chronic conditions such as asthma or diabetes, especially if they are symptomatic in school.

Advances in medical care have led to extremely severely affected children surviving, albeit often with disabilities and medical issues. Examples of this include children born prematurely or with spina bifida. However, most of these children do not need to be isolated in the hospital or in a home environment. Rather, they can do well in school environments with the proper support. Even children with complex technological needs, such as children with gastrostomy tubes, tracheostomy tubes, or ventilators, can be in school with appropriate staffing in the school.

While schools may not understand the medical needs of children with disabilities or chronic medical conditions, physicians and other medical personnel do not always acknowledge the school's perspective and their difficulties in adapting to children with special needs. Physicians and schools need to collaborate as a team around these children.

There are multiple possible roles for the physician in working with schools that have children with disabilities. One critical role is identifying children with disabilities so that appropriate medical care, and then appropriate educational programming, can take place. A child with an intellectual disability or autism spectrum disorder that goes unrecognized, often loses years of specialized teaching and support that could have occurred in early intervention programs and school systems. Screening and surveillance are important activities to identify children early. Further evaluation by medical subspecialists may also be necessary to delineate the child's condition fully. Another important role is proper referral to early intervention programs (for children up to three years of age, up to five years old in some states) or to school system resources (for children older than three) for suspected or confirmed disabilities, or chronic health conditions.

Several federal legislative safeguards are important for children with special health care needs in the United States (1). Knowledge of these can help physicians and other health professionals in providing oversight over children in their care in ensuring that early intervention and school programs support children with special health needs optimally. The Individuals with Disabilities Education Act (IDEA) supports early intervention, special education, and related services for children with disabilities from birth up to age 21. The initial federal law was Public Law 94-142, enacted in 1975, but the most recent amendments to IDEA took place in 2004 as Public Law 108-446 (2). Physicians can be particularly helpful in interacting with the team at the early intervention program or school in providing medical and other information. This is valuable in helping the team determine issues and services needed. The transfer of information and records from the primary care provider and subspecialists to educators is essential in many situations.

Under Part C of IDEA, which covers infants and toddlers from birth until they are three years of age as well as their families, all children eligible to receive early intervention services are required to have an Individualized Family Services Plan (IFSP) (2). From the time an agency or early intervention services provider receives a referral about a child suspected to have a developmental delay or disability, they have 45 days to evaluate the child and write an IFSP. Meanwhile, Part B of IDEA covers children with disabilities from ages 3 until they are 22 years of age and requires that eligible children have an Individualized Education Program (IEP) produced by the school for their special education and related services (3). Initial evaluation for eligibility must take place within 60 days after obtaining parental consent, and subsequently, a meeting to develop an IEP must be conducted within 30 days of determining that the child needs special education and related services. Guidance for an IEP includes that it is a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). Both IFSPs and IEPs are legal documents developed by multidisciplinary teams in conjunction with the child’s family that determine the level of special education or other services to be provided, specific goals and objectives, and ongoing monitoring and planning.

Three other laws provide protections against discrimination of children with disabilities. Section 504 of the Rehabilitation Act of 1973, a civil rights law, is helpful for children that may or may not qualify for IDEA services but require accommodations in their school program because of health or disability concerns (1). Section 504 prevents discrimination because of several factors, including disability. For example, a child with multiple hospitalizations for asthma or other chronic illness may have accommodations such as modified homework or class assignments, altered test dates, or environmental controls. Section 504 only applies to programs receiving federal financial support which includes public schools, but not necessarily private schools. The Americans with Disabilities Act (ADA) is a wide-ranging law that also affects programs for children with disabilities. The Head Start Act requires that at least 10% of enrollment slots in Head Start or Early Head Start programs are occupied by children with disabilities or developmental delays (4).

Students with significant health conditions also require an Individualized Health Plan (IHP). Such a plan lays out health considerations of the child and includes information on medications, activity concerns, equipment, transportation, dietary requirements, and other accommodations (5). By helping to integrate children with medical needs into their school environment, it also promotes school attendance, which is often a problem with these particular students. Although not all schools have nurses directly on the school campus at all times, the school nurse assigned to the school should help to prepare this plan (6). Additionally, there are now many schools with School-Based Health Centers (SBHCs), which can play significant roles in the health of children in schools (7). In addition to physicians in SBHCs, there may be school physicians and school district physicians who consult and significantly interact with schools. Any of them, or alternatively, the student’s own primary care physician, should be an important contributor to the IHP.

Primary care physicians should be the Medical Home for children with disabilities or chronic health problems (5). The Medical Home provides care that is accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective (8). This is interpreted by many that the Medical Home should participate in the development of IFSPs, IEPs, Section 504 plans, and IHPs; collaborate with community resources such as early intervention programs and schools; and help support and advocate for programs that support children in early intervention and school programs.

Therefore, in Case 1 above, medical personnel and schools should discuss options to help Zoe have art activities. Using Section 504, there should be no discrimination against Zoe just because of her physical disability. Accommodations could include providing training to personnel that would help her up the stairs to the art classroom, moving the art class down to the ground level, or building an elevator in the building. When a medical home clinician helps to problem solve with the school, solutions that are creative, effective, and inexpensive often result that obviate the need for more expensive solutions, such as the elevator (although the school may decide that this solution would ultimately be important for many other students or staff, too).

In Case 2, a medical representative on the IEP planning team can help assure that critical medical reports are shared with the school (with consent from the family). The school may have very few, only one, or no child with a particular syndrome over several decades. Schools that obtain expert knowledge of the syndrome or condition, and how it relates to the child, can help initiate important special education and behavioral services. Intellectual disability and excessive caloric intake leading to morbid obesity are found in children with Prader Willi. Special education considerations and control of caloric intake at school are therefore critical considerations for the IEP. Complications of severe obesity such as diabetes, or early death that results from uncontrolled caloric consumption may be decreased with proper planning with school personnel and the family.

For medication issues, physicians usually write the prescriptions for medications that are administered in schools. There are important considerations in terms of school personnel administering medications (in most schools, it is usually NOT done by a physician or nurse), timing of administration, and knowledge of medications being used by a child or teen (6).

For children with terminal illness, participation in school can increase the quality of life for these youth, but what processes should the school have in place for anything that should happen? How should a school deal with Do-Not-Attempt-Resuscitation orders? (9,10)

For technology dependent children, most agree that there are real benefits for children with technology to attend school. Such technology includes ventilators, gastrostomy tubes, and other medical devices that support some vital function. However, problems that must addressed include infection risk, stigmatization by peers, staff responsibility, and staff training (11).

Some children are at high risk for emergencies in school, such as those with certain chronic medical conditions. These emergencies include status asthmaticus, diabetic crises, and status epilepticus (5). These also include children with significant allergies to foods who are at risk for anaphylaxis. Banning certain foods from school is not recommended (12).

1. The school plan that includes considerations of FAPE (Free Appropriate Public Education) in the LRE (Least Restrictive Environment) for a child with autism spectrum disorder or intellectual disability is called a/an:
   a. Individualized Family Support Plan (IFSP)
   b. Individualized Education Plan (IEP)
   c. Individualized Health Plan (IHP)
   d. Individualized Disability Plan (IDP)
   e. Section 504 plan.

2. A 2-year-old child with developmental delays in gross and fine motor activities should have a program called a/an:
   a. Individualized Family Support Plan (IFSP)
   b. Individualized Education Plan (IEP)
   c. Individualized Health Plan (IHP)
   d. Individualized Disability Plan (IDP)
   e. Section 504 plan.

3. Medical professionals have roles in helping children with disabilities EXCEPT:
   a. Diagnosing children with disabilities as early as possible.
   b. Participating in school planning for the child's educational program.
   c. Collaborating as the Medical Home with other related services such as rehabilitative therapists.
   d. Creating the Individualized Education Plan (IEP) for children with disabilities.
   e. Advocating for families of children with disabilities so that federally mandated timelines are met in planning an Individualized Education Plan (IEP).

4. A child with a tracheostomy:
   a. Should not go to school because school personnel are not trained to care for the tracheostomy.
   b. Should not go to school because school personnel cannot handle any emergencies as a result of the tracheostomy.
   c. Should go to school as the parents can supervise the care of the child while in school.
   d. Should go to school with accommodations from a Section 504 plan.
   e. Should go to school if the child does not require a nurse during school hours.

5. True/False: All schools have a school nurse on campus.

1. Dragoo KE, Cole JP. Laws Affecting Students with Disabilities: Preschool Through Postsecondary Education (R45595). CRS Report for Congress. March 13, 2019.
2. U.S. Congressional Research Service. The Individuals with Disabilities Education Act (IDEA), Part C: Early Intervention for Infants and Toddlers with Disabilities. CRS Report for Congress. August 9, 2019.
3. U.S. Congressional Research Service. The Individuals with Disabilities Education Act (IDEA), Part B: Key Statutory and Regulatory Provisions. CRS Report for Congress. August 29, 2019.
4. Bergeron D, U.S. Department of Health and Human Services. Head Start Policy and Regulations: Inclusion of Children with Disabilities. Information Memorandum. January 22, 2020.
5. Gereige RS, Gross T, Jastaniah E, Council on School Health and Committee on Pediatric Emergency Medicine. Individual Medical Emergencies Occurring at School. Pediatrics. 2022;150(1):e2022057987. doi: 10.1542/peds.2022-057987
6. American Academy of Pediatrics Council on School Health. Policy Statement: Guidance for the Administration of Medication in School. Pediatrics 2009;124(4);1244-1251. Reaffirmed February 2013.
7. Arenson M, Hudson PJ, Lee N, Lai B. The Evidence on School-Based Health Centers: A Review. Glob Pediatr Health. 2019;19(6):2333794X19828745. doi: 10.1177/2333794X19828745.
8. American Academy of Pediatrics. What is a Medical Home? May 23, 2022. Accessed August 24, 2022.
9. American Academy of Pediatrics Council on School Health and Committee on Bioethics. Policy Statement: Honoring Do-Not-Attempt-Resuscitation Requests in Schools. Pediatrics 2010;125(5);1073-1077. Reaffirmed August 2016.
10. National Association of School Nurses. Do Not Attempt Resuscitation - the Role of the School Nurse. Position Statement. June 2018.
11. Rehm RS, Rohr JA. Parents’, Nurses’, and Educators’ Perceptions of Risks and Benefits of School Attendance by Children Who Are Medically Fragile/Technology-Dependent. J Pediatr Nurs. 2002;17(5):345-53. doi: 10.1053/jpdn.2002.127174.
12. Centers for Disease Control and Prevention. Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs. 2013. Accessed August 24, 2022.

Answers to questions
1.b, 2.a, 3.d, 4.d, 5.False

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