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 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 a resource classroom placement for reading. She is therefore in the resource classroom two periods everyday. 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 many mildly to severely affected children. 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 mental retardation, autism, blindness, and deafness. A child such as Larry with Prader Willi Syndrome has overlapping medical and educational issues.

Advances in medical care mean that more children are surviving with disabilities and medical issues. 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.

However, schools do not always understand the medical needs and supports for children with disabilities. Physicians and other medical personnel do not always acknowledge the school's perspective and 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 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 mental retardation 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 (1). 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) 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. 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 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 IDEA law was in 1997 as Public Law 105-17 (2). This most recent update restructured IDEA into four parts:
. . . . Part A - General Provisions (purposes of the laws and definitions).
. . . . Part B - Assistance for Education of All Children with Disabilities.
. . . . Part C - Infants and Toddlers with Disabilities (used to be Part H).
. . . . Part D - National Activities to Improve the Education of Children with Disabilities.

Physicians can be particularly helpful in interacting with the team at the early intervention program (Part C) or school (Part B) in providing medical and other information. This can be invaluable in helping the team determine issues and services needed. 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" (3).

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 concerns. 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. 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 (4). Physicians and other health care professionals should be the "medical home" for children with disabilities or chronic health problems. The medical home provides care that is "accessible, continuous, comprehensive, family-centered, coordinated and compassionate" (1). This is interpreted by many that the medical home should participate in IEP/IFSP development, 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 (5). Therefore in Case 1 above, medical personnel and schools should discuss options to help Zoe have art activities. There should be no discrimination against the child 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 representative helps problem solve with the school, creative effective inexpensive solutions often result. 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). Increased knowledge by the school (which may have very few or only one child with a particular syndrome over several decades) can help initiate important special education and behavioral services. Mental retardation and excessive caloric intake leading to morbid obesity are found in children with Prader Willi (6). Special education programs and control of caloric intake at school are therefore critical considerations for the IEP. Complications of the severe obesity such as early death and decline of I.Q. that results from uncontrolled caloric consumption may be decreased with proper planning with school personnel and the family.

Questions

1. The school plan that includes educational programming that can take into account medical problems such as autism or mental retardation in an 8 year old child 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. Free Appropriate Public Education (FAPE)

2. A 2 year old child with developmental delays in gross and fine motor activities can get a free 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. Free Appropriate Public Education (FAPE)

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. Producing 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: Schools have medical consultants paid through the Individuals with Disabilities Education Act (IDEA).

References

1. American Academy of Pediatrics, Committee on Children with Disabilities. The pediatrician's role in development and implementation of an individual education plan (IEP) and/or an individual family support plan (IFSP). Pediatrics 1999;104(1):124-127.

2. National Information Center for Children and Youth with Disabilities. Questions and answers about IDEA. NICHCY News Digest 2000; ND 21 (2nd edition):1-28.

3. National Information Center for Children and Youth with Disabilities. Individualized education programs. NICHCY Briefing Paper 1999; LG 2 (4th edition):1-32.

4. Walsh S, Smith B, Taylor R. IDEA Requirements for Preschoolers with Disabilities: IDEA Early Childhood Policy and Practice Guide. 2000, Ralston, VA: The Council for Exceptional Children.

5. American Academy of Pediatrics, Ad Hoc Task Force on Definition of the Medical Home. Pediatrics 1992;90(5):774. 6. Jones K. Smith's Recognizable Patterns of Human Malformation, 5th edition. 1997, Philadelphia: W.B. Saunders Company.

Answers to questions

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