Saturday, January 17, 2009

Origins of the Individuals with Disabilities Education Act

Originally posted at

I have the great fortune to be an education advocate for chronically ill children. It's rewarding and frustrating work that combines my public school teaching experience with my legal background as an attorney for parents of children who happen to have special needs.

Every week I talk to parents about the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act, federal laws that entitle children with disabilities to a free, appropriate public education. Most of the parents I work with have not heard of these legislative acts or want to know more about them. I look forward to helping guide this community through discussions on IDEA and special education in general. But before we get there, let's go back a few years. Just a few - because to discuss where we are, we need to examine where we've been.

Before 1975, when Congress passed the Education for All Handicapped Children Act, later reauthorized and renamed Individuals with Disabilities Education Act, a child deemed "uneducable" could be (and often was) legally barred from entering public school in most states. Uneducable children were children who were - or who were thought to be - mentally deficient, "crippled," blind, deaf, "defective," "delinquent," epileptic, or "diseased" .

By the time the Education for All Handicapped Children Act was enacted, four out of every five disabled children were denied access to education in U.S. public schools. A majority of these children were institutionalized. In New York State, children declared mentally retarded were institutionalized at Willowbrook State School, an institution located on Staten Island that gained notoriety in the 1960s for conducting a controversial medical study. In this study, healthy inmates were inoculated with hepatitis by injection or orally - by being forced to eat infected feces.By the 1970s, dire conditions caused by lack of staffing and resources led a few doctors and parents of patients at Willowbrook to picket the administration building. Their activism led the local newspaper, the Staten Island Advance, to cover conditions in the institution. A few months later, a local news station sent fledgling reporter, Geraldo Rivera, to cover the controversy. Using a stolen key, Rivera brought a hand held camera into Willowbrook and filmed a video expose of conditions inside the school.

According to the New York Times' Celia Dugger:
Beginning in the late 1940's, Willowbrook offered a mean, often desperate existence to thousands of mentally retarded people. By 1962, there were 6,200 people there, 2,000 more than its capacity. The complex was overcrowded and drastically understaffed. As many as 60 extremely disabled people were packed into one big locked room during the day, for years on end, with only a few attendants to supervise.

Neglect was endemic. There were not enough chairs, so residents lay on the floor or in cribs. And there were not enough clothes, so they often wore rags or nothing at all.
Many could not feed themselves, and the shortage of workers meant residents often did not eat properly. The lack of supervision also allowed unchecked violence among the bored, despairing residents.

Conditions such as these were not unique to Willowbrook. In 1971, the Pennsylvania Association for Retarded Children (PARC) filed a federal class action suit against the Commonwealth of Pennsylvania on behalf of mentally retarded children, aged 6 to 21, who were excluded from Pennsylvania public schools. PARC did not go to trial, but a federal trial court endorsed a consent agreement between the parties. In language later echoed by IDEA, the consent agreement stipulated that no mentally retarded child could be excluded from public school without due process and that Pennsylvania school districts had to provide these children with a free and appropriate public education.

In a second landmark federal case, Mills v. Board of Education of the District of Columbia (1972), the court entered a judgment in favor of the Washington D.C. class of children classified as being behavior problems, mentally retarded, emotionally disturbed, and hyperactive, and who were excluded from school. The judgment stated that lack of funding could not be a reason for refusing service to students, a tenet which still exists under IDEA.

Parent activism, the formation of associations for various disabilities, state legislation, and landmark federal judicial decisions, including PARC and Mills, all led to the enactment of IDEA three years later. They stand as proof that action can lead to results.

As I've said, my direct experience with IDEA has been as an attorney and advocate. I'm hoping that those with diverse experiences (special education teachers, parents of children covered by Section 504 or IDEA, administrators, etc) will share their stories below, or if privacy is preferred, through a personal message. I hope to help guide this community's discussion of special education partially through the use of personal stories, mine plus those shared with me, that speak to the complexities, strengths, and weakness of special education law and policy.
Let me just close by saying how happy I am to see this community forming, and to help it along. Hats off to for knowing how to, well - org(anize) Change!

Photos: Willowbrook 1 (Source)Willowbrook 2 (Source)Willowbrook 3 (Source)
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