Chapter I.8. Disabilities and Physician Interactions with Schools
Jeffrey K. Okamoto, MD
May 2013

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Case 1. A six 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 of 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 knee 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 four 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. Therefore, both fields are child focused with interaction with families. Both want to optimize the child's potential and try 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 illustrated above. She has cerebral palsy, but also a learning disability in reading. Some problems overlap the medical and the educational worlds. A good example is Attention Deficit Hyperactivity Disorder. Children with this condition have major impact on their school behavior and performance. They also require medical attention because of diagnostic and treatment needs.

Others examples with medical/educational overlap include intellectual disability, autism, blindness, and deafness. 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. These genetic conditions are sometimes associated with intellectual disabilities, autism, or learning disabilities.

Children who are not developmentally or physically disabled but can have effects on school performance from their medical conditions 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 premature, 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 supports. Even children with complex technological needs, such as children with gastrostomy tubes, tracheostomy tubes or ventilators, can be in school with appropriate staff and education of those in the school.

Schools do not always understand the medical needs and supports for 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 therefore need to collaborate as a team around these children.

There are multiple possible roles for the physician in working with schools around children with disabilities. An important role is identifying children with disabilities so that appropriate medical care, and then appropriate educational programming, can take place. A child with intellectual disability or autism that goes unrecognized often loses years of specialized teaching and support that could occur in early intervention and school systems. Screening and surveillance are important activities in order 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 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 and teens with disabilities. The initial federal law was Public Law 94-142 enacted in 1975 but the most recent amendments to the IDEA law was 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.

Early intervention programs produce Individualized Family Service Plans (IFSPs) and schools produce Individualized Education Plans (IEPs). These are legal documents that determine the level of special education to be provided, specific goals and objectives, and ongoing monitoring and planning. Guidance for an IEP includes that it is a FAPE (Free Appropriate Public Education) in the LRE (Least Restrictive Environment). Also, a meeting to develop an IEP must be “conducted within 30 days of a determination that the child needs special education and related services.”

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. 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 (1), 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 includes provisions for children with disabilities that are enrolled in Early Head Start or Head Start programs.

A youth who has a significant health condition also requires an Individualized Health Care Plan (IHCP), otherwise known as an Individualized School Health Plan (ISHP) or Individualized Health Plan (IHP). Such a plan lays out health considerations including information on medications, activity concerns, equipment, transportation, dietary requirements and other accommodations (3). The IHCP promotes school attendance, which is often a problem with children who have medical needs. The IHCP also helps integrate a youth with health needs into their school environment. Although schools don’t always have nurses directly within the school campus, a school nurse assigned to the school should ideally help with drafting this plan (4). Physicians should be important contributors to these plans, if not the creator of the plan. Some physicians are consultants to schools and they can also assist in the development of these plans (5). Lastly, there are now many schools with School Based Health Clinics (SBHC), which can play large roles in the health of children in schools.

However, primary care pediatricians and other primary care professionals should be the "Medical Home" for children with disabilities or chronic health problems (6). The Medical Home provides care that is "accessible, continuous, comprehensive, family-centered, coordinated and compassionate". This is interpreted by many that the Medical Home should participate in the development of IFSPs, IEPs, Section 504 plans, and IHCPs; collaborate with community resources such as schools and early intervention programs; 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, or moving the art class down to the ground level, or building an elevator in the building. When a Medical Home clinician helps problem solve with the school, creative effective inexpensive solutions often result that obviate the need for expensive solutions, such as the elevator, although the school may decide that this would be important for many youth, and even staff.

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.

There is a wealth of information around physicians and interactions with schools. This short chapter can only touch on this literature. One can read further on important areas that physicians need to be cognizant of in collaborating with schools including:

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 (4).

Children with Terminal Illness

Participation in school for youth with terminal illness 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-Resuscitate orders? (7, 8)

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 to tackle include infection risk, stigmatization by peers, and who is responsible and needs to be trained among the school staff (9).

Children at Risk for Emergencies

Children with certain chronic medical conditions are particularly at risk for medical emergencies in school. These emergencies include status asthmaticus, diabetic crises, and status epilepticus (6). These also include children with significant allergies to foods who are at risk for anaphylaxis (10). Banning certain foods from school is not recommended (11).


Questions

1. The school plan that includes considerations of FAPE (Free Appropriate Public Education) in the LRE (Least Restrictive Environment) for a child with autism or intellectual disability is called a/an:
. . . . a. Individualized Family Support Plan (IFSP);
. . . . b. Individualized Education Plan (IEP);
. . . . c. Individualized Health Care Plan (IHCP);
. . . . 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 Care Plan (IHCP);
. . . . 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 not requiring a nurse during school hours.

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


References

1. Jones N.L. Education of Individuals with Disabilities: The Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act, and the Americans with Disabilities Act (ADA). CRS Report for Congress. February 3, 2011 (R40123)

2. Jones N.L. The Individuals with Disabilities Education Act (IDEA): Selected Judicial Developments Following the 2004 Reauthorization. CRS Report for Congress. November 10, 2010. (R40521)

3. American Academy of Pediatrics Council on School Health. Medical Emergencies Occurring at School. Pediatrics 2008;122;887

4. American Academy of Pediatrics Council on School Health. Policy Statement--Guidance for the Administration of Medication in School. Pediatrics 2009;124;1244; originally published online September 28, 2009

5. Taras H, Brennan JJ. Students with chronic diseases: nature of school physician support. J Sch Health. 2008; 78: 389-396.

6. American Academy of Pediatrics Council on School Health. Medical Emergencies Occurring at School. Pediatrics 2008;122;887

7. American Academy of Pediatrics Council on School Health and Committee on Bioethics. Honoring Do-Not-Attempt-Resuscitation Requests in Schools. Pediatrics 2010;125;1073; originally published online April 26, 2010.

8. National Association of School Nurses. Do Not Attempt Resuscitation (DNAR) Issue Brief. June 2012.

9. Rehm RS, Rohr JA. Parents’, Nurses’, and Educators’ Perceptions of Risks and Benefits of School Attendance by Children Who Are Medically Fragile/Technology-Dependent. Journal of Pediatric Nursing, Vol 17, No 5 (October), 2002

10. Sicherer SH, Mahr T, and the Section on Allergy and Immunology. Clinical Report—Management of Food Allergy in the School Setting. Pediatrics, Volume 126, Number 6, December 2010

11. National Association of School Nurses. Allergy/Anaphylaxis Management in the School Setting. Position Statement. June 2012.


Answers to questions

1.b, 2.a, 3.d, 4.d, 5.False


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