What does choice really mean? Prenatal testing, disability, and special education without illusions.

Author:Pergament, Deborah
Position:V. The Illusion of Special Education: The Privatization of Resources and Choice through Conclusion, with footnotes, p. 85-117 - New Technologies, New Challenges: Women and Prenatal Genetic Testing in the 21st Century


  1. Public Special Education and the IDEA

    Public special education provides an opportunity to consider how the privatization of responsibility for children with disabilities affects access to the choices that may ultimately determine the outcome of these children's lives. (151) This section will provide a brief overview of the Individuals with Disabilities Education Act (IDEA) and discuss the increasing transfer of responsibility for the education of children with disabilities to the private sector. This shift has resulted in the contraction not expansion--of choices available to parents of children with disabilities.

    For parents of children with disabilities, educational issues are often a primary concern. (152) This concern arises from personal responsibilities and the more global reality that the public school system is the government institution that families of children with disabilities are most likely to interact with. (153) Concerns about education also relate to the tremendous responsibilities parents shoulder under the IDEA. (154) The IDEA is based on the expectation that parents serve as private "attorneys general" that enforce the law, protect their children's rights, and ensure access to services. (155)

    American public school districts provide special education services to children with a diverse range of disabilities. The IDEA mandates that a child receive special education if be has at least one of fourteen enumerated impairments (156) and thus requires special education and related services. (157) The IDEA provides educational services to eligible children until age twenty-one and has grown to include over 9 percent of students ages six through twenty-one. (158)

    The number of children qualifying for special education under the IDEA is growing. This is for several reasons, including: greater acknowledgment of the needs of children with disabilities; (159) improvements in technology that shift mortality to chronic morbidity; (160) federal policy guidance that expanded eligibility to include children with attention deficit disorder and attention deficit hyperactivity disorder under the category "Otherwise Health Impaired"; and the significant increase in the number of children diagnosed with autism. (161) Another explanation focuses on the expansive use of the term "specific learning disability." This may be exacerbated by the efforts of school districts serving low-income populations to obtain funds for students who previously would have been considered non-disabled low-achievers. (162)

    The growing acceptance of disability and efforts to address the needs of children with disabilities represents a significant evolution in social attitudes and public policy about the right to a public education. Beginning with Brown v. Board of Education in 1954, the practice of ending the unequal treatment of children by public schools became a defining issue for civil rights movements. Building upon Brown, advocates for children with disabilities began to argue that children with disabilities were entitled to access to public schools, either by integration into the regular classroom or by the provision of special programs that may have been separate but at least equal.

    Until the 1970s, it was common for many children with severe intellectual and physical disabilities to languish in institutions even if their families had resources. This was because of the stigma surrounding disability--particularly intellectual disabilities. (163) Laws in most states allowed school districts to refuse to enroll students they considered "uneducable," which local school district officials could define as they chose. (164) Although there were nascent efforts by the federal government in the 1950s and 1960s to provide resources to address the educational needs of children with disabilities, no state served all of these children. (165) The few programs that did offer help were often misguided, sometimes placing all children together, regardless of need, simply because they were "handicapped." (166)

    The IDEA requires that states identify, locate, and evaluate "[a]ll children with disabilities residing in the State . . . who are in need of special education and related services." (167) An essential principle of the IDEA is "zero exclusion," the proposition that severity of disability cannot be used to exclude a child from school or receiving educational services from the responsible local educational authority. (168) These requirements represent a hard-won change over the systemic exclusion of children with disabilities from public schools before access to public education become a right recognized by the courts and enshrined in federal statutes. (169)

    In 1972, the United States District Court for the Eastern District of Pennsylvania held in Pennsylvania Association for Retarded Children v. Pennsylvania (170) that depriving disabled students who were deemed not to have had attained a mental age of five years from entering school violated the Equal Protection Clause and thus enjoined the Commonwealth of Pennsylvania from applying the statute to disabled students. (171) The same year, in Mills v. Board of Education, (172) the US District Court for the District of Columbia held that the Constitution required the District of Columbia to provide a publicly supported education for disabled children. (173) The court found that if sufficient fund are not available to finance all of the necessary services, then available funds must be expended equitably and "cannot be permitted to bear more heavily on the 'exceptional' or handicapped child than on the normal child. (174) PARC and Mills directed attention to the ideas that the constitutional principles of equal protection and due process entitled children with disabilities to publicly supported education suited to their needs and that children with disabilities could and should be educated in public schools. (175) Congress was spurred to action by the increased focus on the needs and educational rights of disabled children reflected and reinforced in these cases and a growing lobbying effort undertaken by parents and organizations focused on addressing the needs of children with disabilities and advocating for their greater inclusion in American society. (176)

    In 1975, Congress passed the Education for All Handicapped Children Act (EAHCA). (177) The law was not without its critics. President Gerald Ford believed the bill would be too costly, interfere with state responsibilities, and "upset the balance of relationships between parents and local schools." (178) While Congress sought to open the door of public education to disabled students by mandating that children in states accepting EAHCA funds receive a free public program of education and training appropriate to their capacities, the Act did not necessarily guarantee any particular level of education to children with disabilities once they were inside the schoolhouse doors. (179)

    Despite these limitations, the IDEA represents a significant evolution in society's attitudes toward children with disabilities and the recognition of the need to confront the discrimination, exclusion, and abuse experienced by these children. While acknowledging this hard-won transformation, "[m]any voices over the last decade have called for reform in special education in American public schools." (180)

    As the number of students receiving services under the IDEA has grown, scholars, pundits, parents, attorneys, and others have increasingly criticized the educational system for failing to meet the needs of many children and even harming others. (181) For example, minority children, especially African-American boys, are over-identified as disabled. (182) African-American boys are also disproportionately identified as mentally retarded or emotionally disturbed compared to their white counterparts. (183) In sharp contrast, there is a parallel argument that in more affluent communities with majority white populations, special education is being inappropriately used to obtain academic advantages, especially for competitive college entrance examinations for those with milder disabilities like ADHD. (184)

    Another source of criticism is the emphasis that states and school districts place on procedural compliance to measure the success of special-needs children rather than looking to outcomes such as graduation, employment, and the level of independence in adult living situations. (185) Another overarching challenge results from the continuing, and arguably unresolvable, tensions over what level of impairment justifies eligibility under the IDEA (186) and whether inclusion versus access to specialized services should drive the design and implementation of special education polices. (187)

    The more practical concern of funding the IDEA's mandates has sparked considerable public and political discussion because of the extra costs for special education programs compared to regular education programs. (188) When IDEA was enacted, the intent was to help states provide special education by funding a portion of the additional, or "excess," costs of special education over the costs of general education programs. (189) The original legislation set the maximum federal contribution at 40 percent of the estimated excess cost of educating children with disabilities. Despite this enactment, federal funding has historically provided only a small share of total expenditures on special education. (190) Most recently, the federal funding levels for special education have remained relatively flat since 2004, with the exception of a significant infusion of funds under the American Recovery and Reinvestment Act of 2009. (191) Although politicians are usually careful to avoid seeming opposed to the interests of schoolchildren with disabilities, Congress has never authorized full funding for the IDEA...

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