Academic journal article Journal of School Health

Amber, Katie, and Ryan: Lessons from Children with Complex Medical Conditions

Academic journal article Journal of School Health

Amber, Katie, and Ryan: Lessons from Children with Complex Medical Conditions

Article excerpt

The second half of this century is witnessing startling changes in pediatrics, in the way illness is understood and managed, and in the way childhood functioning is appreciated and addressed. Milton J.E. Senn, a leader in pediatrics, directed the field's attention to developmental concerns of children and offered a living example of the consummate pediatrician.[1] Remembering him and his teaching, it is appropriate to focus, as he did, on children and families, putting them in the center. The stories of Amber Tatro, Katie Beckett, and Ryan White illustrate the vital roles families played in alerting professionals and policymakers to the needs of children with complex medical conditions.


Two parallel streams - one in education and one in pediatrics - bring children with complex medical problems to the current point in their history. In education, major changes occurred in the way disability and illness are perceived and in the approaches taken to provide special educational services. In pediatrics, medical technological innovations improved the life chances of children with a host of conditions previously devastating or fatal.

Educational Innovations

In the early 1960s, the first White House Conference on Mental Retardation and state-level reviews of institutional care for children revealed disturbing information about inequities in service delivery for children with disabilities and complex conditions.[2] Parents of children with disabilities joined with professional advocates to bring suit against state education agencies. Two seminal cases - Pennsylvania Association for Retarded Citizens vs. Pennsylvania,[3] and Mills vs. the Board of Education[4] - documented the need for special education reform at the state and federal levels. As a result, states changed laws from exclusionary policies to mandates for inclusion of all children in the education setting.

At the federal level, the response included passage in 1975 of Public Law 94-142, the Education of All Handicapped Children Act.[5,6] The act was reauthorized in 1991 under the new title Individuals with Disabilities Education Act (IDEA).[7] Basic program elements of IDEA are identification, evaluation services, and due process. Provisions of the law dovetail to create a programmatic response to concerns of disability advocates and to assure a free appropriate public education for all children with disabilities.

IDEA emphasizes the importance of related services to remove barriers to a child's successful inclusion into the least restrictive environment. These related services include:

"...transportation and such developmental, corrective

and other supportive services as are required to

assist a handicapped child to benefit from special

education, and includes speech pathology and audiology,

psychological services, physical and occupational

therapy, recreation, early identification and

assessment of disabilities in children, counseling

services, and medical services for diagnostic and

evaluation purposes. The term also includes school

health services, social work services in schools, and

parent counseling and training..."[8]

Probably more than any other aspect of the law, the related services provision transformed the educational environment and changed schools from solely scholastic institutions into therapeutic agencies.[9,10]

Amber Tatro played a significant role in defining the scope of related services, particularly involving children with complex medical concerns. PL 94-142 clearly defined "school health services" as covered under the related services provision of special education. Nonetheless, Amber, a youngster with meningomyelocele, was denied acceptance at her regular public school because she needed clean intermittent catheterization (CIC) during the school day. When the Irving, Texas, school system refused this "related service," Amber's parents exercised due process rights under PL 94-142 and called first for a hearing, then for a legal proceeding, and finally found themselves before the nine U. …

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