What does choice really mean? Prenatal testing, disability, and special education without illusions.
A. 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. (192)
While full funding remains a central component of the political discourse on federal special education policies, debates increasingly reflect themes over the need to reform all sectors of public education. (193) These include arguments over the need to increase economic efficiencies, accountability, improve post-secondary school outcomes, and enhance parental choice. (194) Privatization and deregulation are key tenets of neoliberal educational policies that have been embraced across the political spectrum. (195) The argument that privatization of public education will result in systemic improvements for all children is premised on claims that the efficiencies of the marketplace will provide more effective services by removing unnecessary regulatory requirements and empowering parents by enhancing or guaranteeing choice. (196) The use of choice as the primary justification for the privatization of special education becomes even more significant because of the role parents play in ensuring their children receive the benefits to which they are entitled under the IDEA, and the resulting limitations on access. Parents of children with disabilities, legal scholars, and attorneys have long recognized the double-edged consequences of private, enforcement: while it has granted some parents greater choice, control, and power over their child's education, private enforcement is unnecessarily adversarial and has created some of the greatest systemic inequities limiting access to educational benefits for many other children with disabilities. (197)
B. Parents as Enforcers: The Privatization of "Rights" and the Illusion of Parents as Equal Members of the "Team"
The stated purpose of the IDEA is to ensure that children with disabilities have available to them "a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment and independent living." (198) The IDEA mandates that states' local educational agencies (i.e., school districts) (199) provide a free appropriate public education (200) "tailored to the unique needs of the handicapped child by means of an 'individualized educational program (IEP).'" (201) An IEP must be a written document containing a specific statement of the child's current performance levels, the child's short-term and long-term goals, the proposed educational services, and criteria for evaluating the child's progress. (202) The school district must review the IEP annually to make necessary adjustments and revisions. (203) Under IDEA, children with disabilities must be educated to the maximum extent appropriate with children without disabilities, and supplementary aids and services must be provided to prevent removal from regular classes. (204) School districts must maintain and provide a continuum of placements ranging from placement in regular classes to restrictive placements such as home and hospital settings. (205)
The Supreme Court's analysis of "appropriate" in Board of Education v. Rowley (206) continues to inform how that term and other key elements of the IDEA are understood. Rowley views special education law as procedural, not substantive, in nature and arguably dictates that the process by which the IEP is created is fax more important than its content. (207) In the words of dissenting Justice White, the Rowley court set a "basic floor of opportunity" for children "intended to eliminate the effects of the handicap, at least to the extent that the child will be given an equal opportunity to learn if that is reasonably possible." (208) Educational progress, however, "must be 'meaningful' and not trivial or de minimis." (209) Rowley's central holding was its establishment of a two-part test for assessing when a school district has violated the IDEA and a student and parents are entitled to redress. (210) A reviewing court must ask two questions: "First, has the State complied with the procedures set forth in the Act [in developing the IEP]? And second, is the individualized educational program developed through the Act's procedures reasonably calculated to enable the child to receive educational benefits?" (211)
The IDEA is unusual among education programs created under the framework of cooperative federalism and statutory provisions designed to facilitate the inclusion of people with disability in that it creates an individually enforceable entitlement right to services. (212) The Rowley court remarked that "[p]arents and guardians will not lack ardor in seeking to ensure that handicapped children receive all of the benefits to which they are entitled under the Act." (213) Thus, the IDEA creates a host of private enforcement mechanisms that parents may use when seeking to challenge a substantive decision about their child's IEP or the process by which it was developed, ranging from administrative hearings to lawsuits, as well as a system of public enforcement through federal and state agencies. (214) The IDEA is not a means-tested program. (215) Although states with higher numbers of poor children receive greater funding, resources under the statute are to be distributed equitably. (216)
Despite its origins in disability rights advocacy and jurisprudence and the language of equality, the IDEA is less a civil rights statute and more a funding mechanism in the guise of a civil rights statute with the provision of a "guaranteed" entitlement for certain children. While it would never be acknowledged publicly, school districts have been able to exploit parents' role as a fiscal gatekeeper and may base decisions about the allocation of resources on the socio-economic status of parents. (217) The entitlement to public services is only guaranteed for children with parents able to access their own private resources to compete on behalf of their child for the limited public resources; (218) indeed, the evidence suggests that children from wealthier families enforce their rights under the statute at higher rates than do children in poverty and with much greater ease and success. (219) More importantly, this enforcement disparity has a negative effect on the ability of parents to exercise their procedural rights and also the amount and quality of services children in poverty actually receive. (220) Beside difficulties securing and paying for counsel, parents also face additional challenges in seeking private enforcement under the IDEA. Not only do school districts have ready access to legal counsel, they have a stable of potential witnesses in the form of teachers, related service providers, and administrators. Moreover, in Arlington Central School District v. Murphy, the Supreme Court ruled that parents do not have the right to recover the costs of experts, witnesses or non-lawyer consultants hired in the course of litigation. (221) These costs potentially compound other incurred costs for parents regardless of the merits or outcome of the case.
Although enforcement of the IDEA is the source of compelling cases before the federal courts, litigation at both the administrative and federal court level is a very small part of the experience most parents have exercising their rights under the IDEA. (222) The IEP process is the locus for the vast majority of interactions between public school district officials and parents of children with disabilities. (223) While it is intended to be collaborative and "parent friendly," (224) the IEP process is a daunting and occasionally contentious process even for the most empowered parents with ready access to traditional avenues of power and legal representation. (225) Professor Daniela Caruso has described IEPs as being "as close to contracts as it gets in the realm of public services governed by federal law" (226) and compares the IEP drafting process to the bargaining process involved in private party contractual dealings. (227) Additionally, limitations on resources force families to compete for special education services just as qualified corporate entities may compete for affirmative action entitlements. (228)
Olga Pribyl, Managing Attorney of the Special Education Clinic for Equip for Equality, Illinois' Protection and Advocacy System, provides a telling description of the illusory nature of parental equality in the IEP process:
Ask any attorney who has a child with special education needs what it is like attend their own child's Individualized Education Program (IEP) meeting. Most likely, they will reply that they had knots in their stomach, were nervous, felt out-numbered, and were completely intimidated. Yes, even your fellow experienced attorneys can be intimidated by a process that is intended to be "parent-friendly." (220)
School districts may use tactics that depend on intimidation and discrepancies in power to shift responsibility to the family and force the use of private resources. Even parents who have a lengthy history of thoughtful involvement in their child's education and school community are characterized as hostile or emotionally disturbed and seeking outlandish, unreasonable, and unnecessary services and placements at "taxpayer" expense. These arguments typically reflect both aggressive legal tactics and an effort to objectify the child with a disability into a commodity. School districts often appear to fail to--or sometimes consciously refuse to-consider that the IDEA expects parents to advocate for their children and also that parents of children with disabilities are most often taxpayers. School districts argue that the parents have taken a frivolous position and their attorneys should be sanctioned through fee-shifting provisions. (230) Another tactic is to argue that parents are seeking a particular service or placement for their child because of their own pathology, denial, or guilt over their failure to act, which has caused or worsened their child's condition (231) or that the parent may even be causing their child harm by seeking services for a child who is actually flourishing. (232) These arguments are used to diminish the power of a family's legitimate claims that their child has been denied educational opportunities or to refute arguments that public responsibility f or a necessary and appropriate research-based educational intervention for the child is a reasonable expectation.
C. Private Remedies: The Real Focus of the IDEA and the Illusion of Public Responsibility for Children with Disabilities
The preference for inclusion of children with disabilities in public schools is not an absolute mandate but a Congressional preference. (233) The more exclusionary placements include separate classes and therapeutic schools, many of which are privately operated. When a public school district fails to provide a child with a disability an appropriate education, a parent may obtain tuition payment for the child to attend a private school under the IDEA as a remedy through an impartial hearing and/or judicial proceeding. (234) Without doubt, placement of some children with disabilities in such schools is often a necessary intervention and the only way to address complex educational needs.(235) Students placed in private schools represent a small fraction of special education students but have been scapegoated as the primary cause of escalating special education costs. (236) Not only is this depiction unfair, it has allowed discussion to shift away from examining what the emphasis on these placements means in the provision of equitable public education services for children with disabilities. The emphasis in IDEA scholarship and jurisprudence on placements in privately run therapeutic programs reflects the ever-deepening wealth inequities in the education of children with disabilities, and the shifting responsibility for children with disabilities from the public sector to the private realms of family and marketplace. (237)
Despite the underlying purpose of the IDEA, the language of the statute and the decisions are framed in terms of "reimbursement." (238) This raises the question whether families who cannot afford to pay tuition and the legal fees necessary to seek reimbursement can really avail themselves of this remedy. (239) Along with high tuition fees and costs for transportation (or in the case of residential placements, room and board), private schools may require application fee deposits, long-term contracts, or have exclusionary admissions. (240) This remedy results in a tacit creation of a means test for a statute that is explicitly intended to provide for an entitlement to all considered qualified through disability. Those who have the private resources to provide for a child with a disability can, but others are excluded from exercising a fundamental right, thus reinforcing inequities. (241)
In School Committee of Burlington v. Department of Education, (242) the Supreme Court, while finding that this was part of the IDEA's procedural safeguards, explicitly acknowledged that this remedy was available to parents of "adequate means:"
[T]he parents who disagree with the proposed IEP are faced with a choice: go along with the IEP to the detriment of their child if it turns out to be inappropriate or pay for what they consider to be the appropriate placement. If they choose the latter course, which conscientious parents who have adequate means and who are reasonably confident of their assessment normally would, it would be an empty victory to tell them several years later that they were right but that these expenditures could not in a proper case be reimbursed by the school officials. If that were the case, the child's right to a flee appropriate public education, the parents' right to participate fully in developing the proper IEP, and all of the procedural safeguards would be less than complete. (243)
In 1997, the IDEA was amended and the right to tuition reimbursemeet for private placements was expressly codified in the statute entitled "Payment for education of children enrolled in private schools without consent of or referral by the public agency." (244) Ten years later, the Court again considered issues related to private placements in Board of Education v. Tom F., (245) which raised the question of whether the IDEA entitles parents to reimbursement for their child's private school education if the child has never received special education services provided by a public school. (246) The Court considered the question again in 2009 in Forest Grove School District v. T.A., (247) holding that Burlington and Carter authorized reimbursement where a flee appropriate public education was not provided, "without regard to the child's prior receipt of services." (248) Despite this finding, courts and impartial hearing officers/administrative law judges often still seek evidence that a child has made progress in the private placement before finding that placement is appropriate. (249) "[N]o circuit court has ruled on the specific question of tuition relief for poor families; and, if decisions in other contexts can be read as barometers, the circuits would likely be split on this question." (250) Arguably, reimbursement of private school tuition under the IDEA is available to parents that manage to place their child in a private school that does not require tuition payments because the school has concluded that the parents' likelihood of success on the merits is high. (251) Some parents have been granted this relief in administrative hearings and by a court. (252) But there is no current uniform approach among the circuits regarding this issue, and whether it is possible for all families with limited financial resources to have equal access to the remedy of private school tuition remains uncertain. (253)
As the Supreme Court stated in Winkelman v. Parma City School District, "we find nothing in the statute to indicate that when Congress required States to provide adequate instruction to a child 'at no cost to parents,' it intended that only some parents would be able to enforce that mandate." (254) Arguably, denial of the right of tuition to low-income parents may be construed as a violation of the Equal Protection Clause because it denies access to an appropriate education for one class of eligible individuals while providing the right to another class. Sustaining this argument is highly improbable either under a strict scrutiny or rational basis standard. (255) Changing the inequality will likely require an amendment to the IDEA or an almost revolutionary rejection of the Supreme Court's formulation that parents who unilaterally place their child with a disability in a private therapeutic school do so "at their own financial risk." (256) This is unlikely in the current political climate, with its increasing emphasis on private responsibilities and resources in addressing the educational needs of children with disabilities. (257)
D. Vouchers and Charter Schools: The Illusion of Choice and the Ultimate Privatization of Public Education
The involvement of the private sector in public K-12 education is not new. (258) Entire industries have long served public schools through textbook and supply companies, bus and custodial services, and food service providers. (259) An extensive number of private day and residential schools have educated children with disabilities after receiving tuition payments from public school systems or other public agencies. (260) Outsourcing has grown to include contracts with companies to provide services like speech, language, occupational, and physical therapies and nursing services within public schools activities traditionally conducted by professionals working directly for the school district. (261) This change has made true privatization of public education for all children, including children with disabilities, more acceptable. There are longstanding concerns about the lack of quality control and evidence of the potential for abuse and even criminal corruption when school systems vest control of special education to the private sector. (262) Yet it is unlikely that the trend toward privatization of the education of children with disabilities will be slowed. (263)
Privatization has resulted from two-interrelated movements gathered under the banner of "choice:" tile voucher movement and tile charter school movement. (264) The concept of special education vouchers is simple: they are taxpayer-funded payments made to a parent or an educational institution for any eligible child who obtains a voucher that can be used to pay for the tuition at a private school. (265) Since the Supreme Court's decisions in Zelman v. Simmons-Harris (266) and Arizona Christian School Tuition Organization v. Winn (267) that rejected challenges to voucher programs as violating the Establishment Clause, the role of the voucher movement as a significant part of the debate over educational reform has been assured.
As of August 2012, there were thirty-two "private school choice programs" in the United States. (268) Sixteen of these programs are school voucher programs, and fourteen are scholarship tax programs. (269) It is estimated that about 30,000 students with disabilities use vouchers to attend private schools, although it is unclear whether the vouchers are being used primarily for therapeutic schools or private schools where students may be integrated with those without disabilities. (270) There is no question that the provision of private school vouchers is controversial; many politicians even use the term "scholarship" to describe voucher programs. (271) There is no clear consensus among disability and parent groups regarding special needs tuition vouchers. The debate continues over whether such programs enhance parental choice over children's educations and provide a step forward for children with disabilities, or whether vouchers represent a renunciation of the public's obligation to provide a free appropriate public education and will ultimately result in the return of the widespread exclusion of children with disabilities from public schools.
The application of free market models to contemporary school reform originated with economist Milton Friedman over a half-century ago. Professor Friedman advocated for a publicly financed, free-market school choice model that provided parents with cash vouchers to select among schools operated by for-profit or non-profit companies. (272) During the 1980s and early 1990s, interest in neo-liberal, free-market-oriented school reform resurfaced as a means to address failing schools in urban areas. (273) The general argument for school voucher programs was "that a graduated or calibrated voucher system, diverting funds complementary to the income needs of the family, would create an incentive for private schools and high-quality suburban public schools to recruit low-income students." (274)
Advocates of voucher programs for children with disabilities argue that they will cure most of the systemic inadequacies and inequities that plague public schools' provision of special education under the IDEA. They claim that the increased competition for students with disabilities resulting from the involvement of the private sector offers a superior approach to traditional reform efforts to address the limited resources, indifference, and lack of meaningful progress that children with disabilities experience in the public schools, and that competition ultimately will benefit students who remain in public schools. (275) Voucher advocates have also asserted that market forces create incentives for school districts to avoid the unnecessary over-identification of students with disabilities and thereby save taxpayers money. (276)
Proponents of vouchers also claim that they eliminate the disparities between parents' abilities to access private therapeutic school placements by eliminating the inherent uncertainty of litigation and the financial and psychological toll of suing the same people charged with teaching their children. (277) More dramatically, supporters contend voucher programs remove the inequities caused by the IDEA's reliance on private enforcement and democratize access to private placements by reducing legal and financial barriers created by the hearing process when parents are seeking a private therapeutic placement. (278) Supporters argue that the rights of parents are seemingly identical under IDEA and under special education voucher laws, but the ease with which parents can exercise those rights is profoundly different because of the power of market forces and the inadequacy of the legal system. (279)
The claim of greater accountability for outcomes and identical protection or even greater rights is made despite acknowledging that parents have no legal right to specific services from private schools (280) and the fact that the U.S. Department of Education's Office of Civil Rights (OCR) has repeatedly opined that students with disabilities who voluntarily participate in voucher programs waive most of their rights under the IDEA. (281) The only enforceable individual right that remains is the right to complain about the local school district's failure to identify, locate and evaluate students with disabilities--not to complain about the failure to provide appropriate related services.
The OCR has determined that private schools participating in voucher programs do not become state contractors when they accept state funds because parents are the decision-makers and local educational authorities are not involved in the decision to place children. (282) More importantly, nothing in Section 504 or the ADA mandates that children in private schools be provided with an IEP or the other entitlements designed to ensure meaningful educational benefit or receive differentiated programming and related services. (283) Therefore, when parents of children with disabilities choose to accept a voucher and place the child in a private school, they have effectively waived meaningful protection under federal civil law of their child's rights to access an education. (284)
"From the viewpoint of parents stuck in incompetent districts, financially unable to pay tuition, and faced with the awful prospect of seeing their children doomed to poor functioning for lack of early intervention, school choice may be the only hope and is a sacrosanct advocacy goal. But from a broader societal perspective, developing publicly funded, state-of-the-art special education programs remains a far more desirable option--one that vouchers and scholarships inevitably undermine." (285) The argument that vouchers provide choices that result in meaningful educational benefits for individual children and hold the promise to resolve the systemic inequities that have plagued special education necessitates consideration of whether these choices are real, or merely illusory promises designed to promote free-market school reform ideology. The essential question is whether the educational outcomes of children with disabilities educated in private schools paid for by vouchers justify the waiver of the rights guaranteed by the IDEA. (286)
While there is evidence that voucher programs can benefit children with less severe disabilities, (287) the evidence points to overall negative implications for the development and provisions of special education programs for children most in need of specialized instruction and related services. Students with mild disabilities such as learning disabilities, attention deficit disorder, and mild speech and language disorders may only require a small learning environment or interventions that can be provided by any reasonably competent educator with adequate instructional resources, the opportunity to respond to differentiate instruction, and administrative support. (288) The exodus of students with milder disabilities from the public school system may also result in the redistribution of funds to the private sector and lessen collaboration among parents of children with disabilities. This is because parents of students with varying levels of impairment would be forced to compete for the increasingly scarce resources designated for the actual provision of direct therapeutic services. (289)
The effectiveness of voucher programs in addressing the needs of children with more severe disabilities has not been demonstrated by a study of objective measures of student progress in academic subjects or basic skill development. (290) Such students require highly specialized instruction and services necessitating the involvement of specially trained and certified therapists and nursing services or the availability of assistive technology for communication, mobility, and other needs. Paradoxically, they are the same students who are most often depicted as the "poster children" for the voucher movement because it is politically treacherous to argue for a position that may be construed as antithetical to the interests of children with disabilities. (291) The lack of persuasive evidence that voucher programs result in meaningful educational outcomes and indications that they may actually disadvantage children with severe disabilities raises questions about the continued availability of appropriate public resources to provide for these children's educational needs. As Professor Hensel has argued,
[t]he wide-spread dissatisfaction with the status quo for students with disabilities is not a simple result of the public schools' inability to meet the needs of these children. Instead, to a large extent, it is a product of the public's unwillingness to make meeting the needs of such students a priority. Legislators would be better served by looking to programs that help all students with disabilities achieve their academic potential rather than focusing on benefits for only a few. (292)
Supporters of vouchers may also wish to consider the inherent contradiction of predicating access to the marketplace of such reforms and "choices" on the waiver of the basic protections for children with disabilities under the IDEA.
2. Charter Schools
While vouchers are a perennial favorite cause among conservative critics of public schools, the charter school movement has been embraced by many parents, politicians, social critics, philanthropists, business leaders, and other self-styled education reformers from an array of political persuasions. Charter schools are frequently at the epicenter of the debates over American public school reform, with new controversies emerging almost every day. (293)
"Charter schools are the 'kudzu of school choice' and their spread is inevitable." (294) Their proliferation has also been facilitated by the dominant place they are given in federal education legislation and grant programs. (295) In some cities, charter schools have become the cornerstone of school reform. In post-Katrina New Orleans, for example, charter schools are the foundation for the entire school system. (296) Despite their spread and prominence in educational reform efforts, there is little evidence that charter schools have resulted in improvements in public schools or equitable educational choices. The evidence suggests that the proliferation of charter schools is actually constricting the choices available to families of children with disabilities and may ultimately result in widespread limitations on services and do little to improve outcomes. There is clear evidence demonstrating that charter schools seek to limit the enrollment of children who require expensive or time-consuming special education interventions. More importantly, evidence demonstrates that even those children enrolled in charter schools are being denied adequate services and that services for the children with disabilities left in traditional public schools may be placed at risk by the diversion of funding resources to charter schools.
Charter schools function as quasi-market schools and are distinguished from traditional public schools by their autonomy from state and local educational authorities in governance, teacher hiring, budget, curriculum, and a range of school policies pertaining to administration and operations. (297) The management and operational structures of charters vary from for-profit educational management organizations to nonprofit entities including universities, religious organizations, and community groups. (298) Because they are publicly funded schools, they must comply with federal laws concerning the rights of students with disabilities under the IDEA, Section 504, and the ADA. (299)
The National Alliance for Public Charter Schools reported that in 2011-2012, 4.2 percent of America's public school children attended charter schools. (300) The Government Accounting Office found that in 2009-2010, the most recent data available at the time of its review, approximately eleven percent of students enrolled in traditional public schools were students with disabilities, compared to about 8 percent of students enrolled in charter schools. (301) With regard to the effectiveness of charter schools, the evidence is inconclusive as to whether both regular education and special education charter students truly obtain meaningful measurable levels of academic achievement compared to students at traditionally organized public schools. The evidence suggests that the quality and performance of charter schools varies significantly from state to state. (302) While the same can be said of American education in general, charter schools' expansion into forty states, the District of Columbia, and Puerto Rico and their favored political position makes nationwide outcomes fair game for determining the validity of the claims that charter school supporters frequently make about both general and special education students and the importance of school choice for their families. (303)
A longstanding criticism of charters schools is their lack of inclusion of racial minorities and students with disabilities. Critics argue that rather than improving the overall quality of public education, charters create a two-tiered balkanized education system with different resources that cater to different populations. The concern regarding students with disabilities is that large urban school systems will become increasingly segregated, with more disabled students left in traditional public schools with dwindling resources due to shrinking student populations and students with less complex disabilities attending charter schools. (304) While the issues of funding disparities are beyond the scope of this Article, the resulting limitations on the educational choices available to families of children with disabilities and the expectation that families assume responsibility for services that were previously the province of the public schools.
A recent RAND Corporation study found that students in public schools have achievement levels that are comparable to their peers who enter charter schools. This finding refutes a frequent criticism that the proliferation of charter schools in urban and minority communities results in the exodus of the best students from traditional public schools. However, other studies demonstrate that school choice tends to advantage students who may not necessarily have stronger academic histories but come from families better equipped to participate in the application process to exercise school "choice." (305) Research suggests that families' access to the "educational marketplace" is unequally constrained by such factors as connection with social media or other influential networks through which knowledge about particular school choices and the process is shared. The same research also suggests that language barriers, socioeconomic status, and the ability of parents to arrange transportation for their school-age children contributes to the ability of a family to access charter schools. (306) This data may also indicate that families of children with disabilities are more easily excluded from the charter schools because of intensified challenges families face while advocating for a change in a child's placement in the IEP process.
A study of charter schools in thirteen states by the Government Accounting Office (GAO) released in June 2012 found that charter schools enrolled a lower percentage of students with disabilities than traditional public schools in both school years 2008-2009 and 2009-2010. (307) The GAO documented that in six states, charter schools enrolled a higher proportion of disabled students than traditional public schools. But this may not reflect equal access: schools where more than 20 percent of the students had disabilities were more likely to be charter schools, in part because those schools cater specifically to students with special needs like autism. (308) Charter schools struggle to enroll and appropriately serve students with disabilities such as mental retardation; serious emotional disturbance; autism; and hearing, speech, language, or orthopedic or visual impairments. (309) The charter schools in large urban districts tend to enroll disproportionately greater numbers of students with high-incidence disabilities such as specific learning disabilities and lower numbers of students with low-incidence, more significant disabilities (e.g., intellectual disabilities and autism) and more educationally intensive and costly needs. (310) "For example, during the 2005-2006 school year, there were only three children with intellectual disabilities in all San Diego non-conversion charter schools combined." (311) In comparison, traditional schools in tile same district educated almost one thousand students with intellectual disabilities. (312)
The GAO suggested several possible reasons for the overall disparity. Some parents choose public schools that have more established programs for students with disabilities, while some charter schools do not have the resources or teaching staff to support individual students' needs. (313) But in some cases, school administrators tacitly acknowledged that some charter schools may be discouraging students with disabilities from enrolling and denying admission to students with more severe disabilities to prevent lowering overall test scores or to avoid the costs associated with educating these students. (314) Other accounts indicate that charter schools "push out" students with disabilities who cannot conform to the charter school's strategies or rigid disciplinary code for reasons related to their disability and not willful misconduct. (315)
The GAO also found a variety of other factors that resulted in lower enrollment, including some that result from efforts to circumvent the procedural requirements and protections of the IDEA. (316) A survey evaluating special education programs and services of twenty-three charter schools in New Orleans found "an astonishing number of 504 plans." (317) "[S]everal of the surveyed special education coordinators acknowledged that the Section 504 plans were developed to avoid referring students for special education evaluations." (318) The findings of the GAO study regarding systemic exclusion of students with disabilities and violations of the IDEA are echoed in the allegations made in a pending complaint filed by the Bazelon Center with the DOJ alleging that charter schools in Washington, D.C., illegally require parents to disclose information about students' disabilities to screen out applicants with serious disabilities, advise parents that the school cannot or will not meet a student's needs, and segregate students with disabilities in two overly restrictive schools. A federal class action suit on behalf of all New Orleans students with special needs is also currently pending against the Louisiana Department of Education, the Board of Elementary and Secondary Education, and state superintendent Paul Pastorek. (319) The suit alleges that the defendants have (1) denied students with disabilities the same variety of educational programs and services available to non disabled students in violation of Section 504; (2) failed to locate, identify, and evaluate students in need of special education services in a timely fashion; (3) failed to provide a free and appropriate public education; and (4) unlawfully disciplined and excluded students with disabilities from educational programs in contravention of the IDEA. (320)
The reasons for failure to serve students reflect both the continuing struggles all schools face educating students with complex disabilities and also issues unique to charter schools. Because of their autonomous structures, charter schools may be isolated or fail to develop systems that allow for the "economies of scale" for the recruitment of teachers and the development of resources necessary to serve students with disabilities. (321) These arrangements result in the same kind of delays and lack of quality assurance that have fueled dissatisfaction with the public school system. They also reflect the systemic inequities in school funding that affect the provision of K-12 public education throughout the United States. (322) Some states provide a higher level of funding for special education based on the severity of a student's disability, making it more feasible financially for charter schools in those states to serve students with more severe disabilities. (323) In contrast, other states do not take such factors into consideration when providing funding for special education. This shifts the responsibility of school districts and places financial burden on individual charter schools. The resulting limitation on service may ultimately create an expectation that parents of children with disabilities turn to private resources to ensure their child receives the educational services that under the IDEA should be provided by the public schools. (324)
Although several thoughtful proposals have been made about how to address these problems, too little attention is being given to finding actual solutions. (325) The wide-scale avoidance of responsibility resulting in "pushing out" of students with disabilities from charter schools or the failure to provide services for the students left in them will likely result in pressure on families to obtain resources outside of the school system. Such a result represents merely a shifting of problems from the public to private sector without addressing the fundamental issues of ensuring meaningful educational outcomes for children with disabilities.
When the IDEA was reauthorized in. 2004, increasing parental choice was one of the hallmarks of what was touted as a new era of accountability and improved educational outcomes for children with disabilities through the promise of reforms made possible by the involvement of the private sector in public education. "If a significant fraction of student--those with disabilities--are kept from having adequate choices, no one will ever know if a choice system can work when all students are included. Most important, critical opportunities to improve education for children with disabilities are at risk of being lost." (326) Most importantly, it appears that the choices afforded to families of children with disabilities may be another illusion of choice created by the privatization of responsibilities for children with disabilities.
This Article began by discussing debates about the rights of women to exercise rational choice in the use of prenatal genetic testing technologies and the responsibilities of a just society in the care and education of children with disabilities. The connection between the choice to use prenatal testing and issues of access and choice in special education is not readily apparent but demonstrates the complex challenges and choices that confront women and their partners about nurturing, rearing, and educating children.
One solution to the decades-long, highly-charged political, legal, and cultural battles over prenatal testing and abortion has been efforts designed to provide pregnant women with information about the possible life course of a child with disabilities, including educational outcomes, through the Prenatally and Postnatally Diagnosed Conditions Awareness Act. Proponents of this approach have emphasized that great strides have been made in improving the lives of people with disabilities through legislation addressing entitlement to public benefits and access to services and public accommodations. The access to public education for children with disabilities guaranteed by the Individuals with Disabilities Education Act is often cited as one of the most successful examples of these efforts. Yet, the success of the system in providing meaningful benefit to children with disabilities is being questioned by stakeholders across the political spectrum. As argued above, access to public education services is dependent on a parent's ability to navigate the increasingly fragmented system of public resources or reliance on the private resources of family and marketplace, if available. Access to private resources may also require the willingness to waive meaningful legal protections under the IDEA and other civil rights statutes.
The competing agendas and tensions that structure relationships between school districts and parents and the growing role the market plays in the provision of special education in American public schools illustrates an encroaching movement back to private, familial responsibility for children with disabilities. Parents of children with disabilities are increasingly limited in the choices they have for their children despite the political rhetoric emphasizing the right to choice for these families. The available evidence regarding the effects of the increasing privatization of responsibility for the education of children through the use of vouchers and charter schools indicates that children with disabilities are not well served by market-based reforms and are being further marginalized by them. Free-market reforms may be fundamentally incompatible with the educational needs of children with disabilities and the overarching goals of promoting the dignity and inclusion of people with disabilities. We must acknowledge the paradox created when there is concerted effort to encourage women and their partners to choose to have a child with a prenatally diagnosed disability while government policies emphasize private responsibility for the care and education of children with disabilities and mandate restrictions on public expenditures for them.
The emphasis on private responsibility and restrictions on public expenditures for children with disabilities are often justified by claims that such strictures are designed out of respect for the sanctity of family life and to encourage the overarching moral and legal duty of parents to care for their children. This is not to suggest that parents do not owe a duty to care for their children, disabled or not, but it is a recognition that society plays an essential role in caring for vulnerable citizens and promoting the healthy development of its citizenry. Pregnant women and their partners often use prenatal genetic diagnosis to achieve a sense of reassurance and to assert control over their reproductive choices. Prenatal testing, when chosen in an informed and conscious manner, increases reproductive choice, and it also provides hope, information, control, and autonomy. The practices of genetic screening and prenatal genetic diagnosis can be inherently pro-natal. By supporting parental hopes for reasonably healthy children--not perfect offspring--the use of prenatal diagnosis encourages at-risk women to undertake a pregnancy and to have children. Within the boundaries of the law and rational regulation, pregnant women and their partners should be able to make use of prenatal testing and related technologies, if they choose. (327)
There is a continuing struggle to understand that allowing the choice to use prenatal genetic technologies can be incorporated into a political and legal agenda designed to protect the rights of children and families affected by disabilities and to promote the development of all children. (328) We must recognize the importance of empowering both pregnant women and parents of children with disabilities to exercise choice as a cornerstone of ensuring the continuation of a just society. An obvious way to subjugate people is to make them feel powerless over their own lives so that they will not challenge the dominant paradigm. This can be done by constricting choices over childbearing and restricting access to the resources necessary to address the demands and limitations that such choices may create for women, families, children, and society.
In recognition that reproductive choice in a just society encompasses all options, refusing prenatal testing is as accepted as choosing to undergo prenatal testing. More importantly, when addressing all results of that choice, we must avoid encouraging legal or social mandates that demand pregnant women and their partners reduce the likelihood that their future children will have a serious disability. Instead, we must endeavor to develop procedures for the equitable use of prenatal testing by all who choose to use it, on a voluntary basis the very essence of choice.
In doing so, we must also recognize that prenatal screening and diagnosis, even with increasingly sophisticated technologies, cannot eliminate all of the uncertainties about the health of a fetus. But they can dramatically reduce them, and that is the aim of the technologies. We must acknowledge that children with genetic and other disabilities will continue to be born even with the availability of these technologies, as no technology dependent on the human involvement in its application is infallible and the expression of many genetic conditions is multifactorial in nature.
Professor Abby Lippman, in 1994, asked a series of questions concerning society's responsibility to mothers and children in the present and future generations with regard to prenatal testing and disability. "The question is how to provide support for women in a way that does no harm, that does not measure its effectiveness by the short-term profit from money saved when the lives of those with present or future disabilities are prevented, that does not view the birth of a child with a disability as a technological failure." (329) These questions obviously persist and must be answered by considering how a just society must ensure both the right to choose to use prenatal technologies and the rights of children and adults with disabilities.
The rights and needs of children and adults with disabilities cannot be subjected because of the existence of technologies that can be used to prevent those disabilities. The just society does not simply provide the illusion of choice by ignoring all consequences of those choices, including the responsibility to ensure the inclusion and acceptance of those members with greater and more challenging needs. Such a society promotes meaningful inclusion by ensuring all members are educated to maximize their potential for independent functioning (at whatever level possible) while at the same time making resources to support those who are dependent readily available.
Most importantly, a just society recognizes that women are capable of choices and entitled to support in confronting all of the potential consequences of those choices. It is both logically inconsistent and fundamentally unfair to burden women by denying them the right to make decisions that result in that private responsibility. They should not be punished for making demands on the state to care for and educate children with disabilities that result from the reproductive choices and uncertainties that are an inherent part of the human condition.
(1.) Prenatally and Postnatally Diagnosed Conditions Awareness Act, Pub. L. No. 110-374, 122 Stat. 4501 (codified at 42 U.S.C. [section] [section] 201, 280g-8).
(2.) Cf. Dorothy E. Roberts, Privatization and Punishment in the New Age of Reprogenetics, 54 EMORY L.J. 1343, 1345 (2005) ("Rather than expand public surveillance and regulation of women's reproductive decisions, we should tackle the social conditions that limit women's options for bearing and raising healthy children who can flourish in this society.").
(3.) Harold A. Pollack, Do Liberals Disdain the Disabled?, N.Y. TIMES (Feb. 27, 2012), http://www.nytimes.com/2012/02/27/opinion/do-liberalsdisdain-the-disabled.html.
(4.) Eugene Pergament & Deborah Pergament, Reproductive Decisions After Fetal Genetic Counseling, BEST PRACTICE & RESEARCH CLINICAL OBSTETRICS & GYNAECOLOGY 1, 13 (2012).
(5.) See Maryhelen D. MacInnes, One's Enough for Now: Children, Disability, and the Subsequent Childbearing of Mothers, 70 J. MARRIAGE & FAM. 758, 758 (2008).
(6.) See Pergament & Pergament, supra note 4 (reporting that women making decisions about prenatal testing face pressures from others, emotions, and a lack of information).
(7.) This is different from what has been reported in the medical literature. See, e.g., Brian G. Skotko, Prenatally Diagnosed Down Syndrome: Mothers Who Continued Their Pregnancies Evaluate Their Health Care Providers, 192 AM. J. OBSTETRICS & GYNECOLOGY 670, 671-72 (2005). The differences in this admittedly unscientific and much smaller sample may result from the fact the families I represent have access to medical geneticists and genetic counselors affiliated with academic medical centers. Most have received Comprehensive genetic counseling during pregnancy and all have received genetic services after the birth and postnatal confirmation of diagnoses. My clients also tend to demonstrate the self-advocacy skills necessary to request information and attention from healthcare providers.
(8.) See, e.g., Sara Eleanor Green, "We're Tired, not Sad": Benefits and Burdens of Mothering a Child with a Disability, 64 SOCIAL SCIENCE & MED. 150 (2007)
(9.) See, e.g., Marsha Mailick Seltzer et al., Psychosocial and Biological Markers of Daily Lives of Midlife Parents of Children with Disabilities, 50 J. HEALTH & SOC. BEHAV. 1, 2 (2009) ("Parents of children with disabilities face a range of stressors associated with their children's behavior problems, including stigma, cost of care, and having to negotiate a fragmented service system....").
(10.) See Margaret Storey, "Special Needs, "McCain-Palin, & the 2008 Election, SALON (Sept. 21, 2008, 3:25 PM), http://open.salon.com/blog/margaret_storey/2008/09/19/special needs_mccain-palinthe_2008_election.
(11.) Face the Nation (CBS television broadcast Feb. 19, 2012), transcript available at http://www.cbsnews.com/2102-3460_162-57381060.html.
(13.) Santorum failed to consider the basic medical fact that most fetuses are not affected by Down syndrome or diagnosed with another trisomy, even among the population that has undergone chromosomal analysis after amniocentesis. See Antonio Forabosco et al.,, Incidence of Non-Age-Dependent Chromosomal Abnormalities: A Population Based Study on 88965 Amniocenteses, 17 EUR. J. HUM. GENETICS 897 (2009). The second, more complex, issue relates to the inflated description of the rate of abortions after the detection of Down syndrome by amniocentesis. Santorum claimed that "ninety percent of Down syndrome children in America are aborted." Face the Nation, supra note 11. This assertion is not supported in the scientific literature. See generally Jaime L. Natoli et al., Prenatal Diagnosis of Down Syndrome: A Systematic Review of Termination Rates (1995-2011), 32 PRENATAL DIAGNOSIS 142 (2012). The review determined that weighted mean termination rate was 67 percent among seven population-based studies, 85 percent among nine hospital-based studies, and 50 percent among eight anomaly-based studies. Evidence suggests that termination rates have decreased in recent years. Termination rates also vary with maternal age, gestational age, and maternal race/ethnicity. The study concluded that a summary termination rate may not be applicable to the entire US population. Id.
(14.) Face the Nation, supra note 11.
(15.) See Eugene Pergament, Prenatal Testing: Screening, Diagnosis, and Preimplantation Genetic Diagnosis, in MOLECULAR GENETICS AND PERSONALIZED MEDICINE 147, 147 (D. Hunter Best & Jeffrey J. Swensen eds., 2012).
(16.) Letter from James N. Martin, President, Am. Coll. of Obstetricians & Gynecologists, to the 2012 Declared Presidential Candidates (Feb. 21, 2012) (providing information concerning the importance of prenatal care, including identification of fetal problems and early indicators of premature birth).
(17.) Emily A. Partridge & Alan W. Flake, Maternal-Fetal Surgery for Structural Malformations, 26 BEST PRACTICE & RESEARCH CLINICAL OBSTETRICS & GYNAECOLOGY 669, 679 (2012) (concluding that advances in prenatal diagnosis and technical innovations in the surgical approach to the fetus have resulted in an increase in the successful clinical application of fetal intervention over the past three decades).
(18.) Face the Nation, supra note 11.
(20.) See Trip Gabriel, Santorum Defends Remarks on Obama and Government's Role in Education, N.Y. TIMES, Feb. 20, 2012, at A11.
(21.) Julie Bosman, In Palin, Families of Disabled Children See a Potential White House Friend, N.Y. TIMES, Nov. 3, 2008, at A19.
(22.) See Sarah Palin, Palin's Speech on Children with Special Needs, REAL CLEAR POLITICS (Oct. 24, 2008), http://www.realclearpolitics.com/ articles/2008/10/palins_speech_on_children_with.html.
(23.) Jodi Kantor et al., Fusing Politics and Motherhood in a New Way, N.Y. TIMES, Sept. 8, 2008, at A1.
(24.) The question of whether the difference between Rick Santorum's and Sarah Palin's public comments on prenatal testing reflect gender differences, bona fide political beliefs, or carefully constructed policy positions is beyond the scope of this Article and will likely be the subject of academic and popular media considerations of both figures for some time.
(25.) Sandra Sobieraj Westfall, John McCain & Sarah Palin on Shattering the Glass Ceiling, PEOPLE (Aug. 29, 2008, 8:30 PM), http://www.people.com/people/article/0,,20222685,00.html.
(26.) See, e.g., The Politics of Amniocentesis, FREAKONOMICS (Sept. 11, 2008, 11:12 AM), http://www.freakonomics.com/2008/9/11/the-politics-ofamniocentesis.
(27.) See Palin, supra note 22 ("The law requires our public schools to serve children with special needs, but often the results fall far short of the service they need. Even worse, parents are left with no other options, except for the few families that can afford private instruction or therapy.").
(28.) Id.; see generally Mark Harrison, Public Problems, Private Solutions: School Choice and Its Consequences, 25 CATO J. 197 (2005) (providing ah overview of the market approach to organizing elementary and secondary education systems).
(29.) See Rayna Rapp & Faye Ginsburg, Reverberations: Disability and the New Kinship Imaginary, 84 ANTHROPOLOGICAL Q. 379, 397-98 (2011).
(30.) JOHN BARTLETT, FAMILIAR QUOTATIONS 627 (Emily M. Beck ed., 14th ed. 1968) (quoting ALPHONSE KARR, 4 LES GUEPES 407 (1849) ("Plus ca change, plus c'est la meme chose.")).
(31.) My formulation of these questions was influenced by Baroness Helena Kennedy's description of the role of the state in the foreword to the report of the Human Genetics Commission. HUMAN GENETICS COMMISSION, MAKING BABIES: REPRODUCTIVE DECISIONS AND GENETIC TECHNOLOGIES 5 (2006). It must be acknowledged that the Human Genetics Commission's recommendations are made in a context that recognizes the challenge these issues create for the welfare state, which is a distinctly different approach than the market oriented approach that is the dominant paradigm in the United States. "In the UK, reproductive choices are made against the background of the welfare state. In this sense, founding a family is not a purely personal issue, but can have a wider social impact. This is because some fertility treatment is subsidized by state, and services are provided for babies and children who may have higher than average care needs, because of their health and/or family circumstances. However, at this time such considerations have by and large not been taken into account by individuals or expressly addressed by the state." Id. at 20.
(32.) Pergament, supra note 15, at 147.
(34.) Amniocentesis relies on the chromosomal and biochemical analysis of cultured amniotic fluid. It can be performed after a gestational age of fourteen weeks and is usually performed between fifteen and seventeen weeks. Ronald J. Wapner, Genetic Amniocentesis and Chorionic Villus Sampling, in QUEENAN'S MANAGEMENT OF HIGH-RISK PREGNANCY: AN EVIDENCE-BASED APPROACH 453 (John T. Queenan et al. eds., 6th ed. 2012). Chorionic villus sampling (CVS) is also an invasive procedure to obtain material that reflects the genotype of the conceptus. Id. The procedure is typically performed between seventy and eighty-one days after the last menstrual period and involves the withdrawal of villi of the chorion (part of the placenta) under ultrasound guidance. Id.
(35.) "[PGD] is an alternative to prenatal diagnosis for the detection of genetic disorders in [genetic parents] at risk of transmitting a genetic condition to their offspring." See Pergament, supra note 15, at 157. It requires the use of three integrated technologies: conventional (IVF), micromanipulation of single cells, and genetic analysis of the single cell. Id. at 157. It is still subject to confirmation by invasive testing. Id. at 160. Although PGD raises many ethical, legal, and social issues, the limited clinical use of this technology is reflected in the limited discussion of PGD and the emphasis on other forms of prenatal testing in this Article.
(36.) Id. at 153 (stating that the application of first and second trimester screening has led to corresponding reduction in the rates of invasive testing by CVS and amniocentesis).
(37.) Current literature often refers to noninvasive prenatal testing (NIPT) as noninvasive prenatal diagnosis (NPID). This terminology is considered by many as inaccurate and misleading because the current technology is recommended only as a highly specific screening measure for high-risk pregnancies that requires follow-up diagnostic testing. Patricia L. Devers et al., Noninvasive Prenatal Testing/Noninvasive Prenatal Diagnosis: The Position of the National Society of Genetic Counselors, J. GENETIC COUNSELORS, Jan. 22, 2013, http://www.nsgc.org/Portals/0/Advocacy/nsgc%20nipt%20white%20Paper.pdf.
(38.) INTERNATIONAL SOCIETY OF PRENATAL DIAGNOSIS, ISPD RAPID RESPONSE STATEMENT: PRENATAL DETECTION OF DOWN SYNDROME USING MASSIVELY PARALLEL SEQUENCING (MPS) (2011).
(39.) American College of Obstetricians & Gynecologists, ACOG Practice Bulletin No. 77: Screening for Fetal Chromosomal Abnormalities, 109 OBSTETRICS & GYNECOLOGY 217, 219 (2007); see also American College of Obstetricians & Gynecologists, A COG Practice Bulletin No. 88: Invasive Prenatal Testing for Aneuploidy, 110 OBSTETRICS & GYNECOLOGY 1459, 1462 (2007).
(40.) A COG Practice Bulletin No. 77, supra note 39.
(41.) A COG Practice Bulletin No. 88, supra note 39, at 1462.
(42.) Pergament, supra note 15, at 150.
(43.) Id. at 147 (defining the difference between genetic screening and testing).
(44.) Pergament & Pergament, supra note 4.
(46.) Pergament, supra note 15, at 151.
(48.) See id. at 152.
(49.) Kypros H. Nicolaides et al., Fetal Nuchal Translucency: Ultrasound Screening for Chromosomal Defects in First Trimester of Pregnancy, 304 BRIT. MED. J. 867, 867 (1992) (examining the significance of fetal nuchal translucency at 10-14 weeks' gestation in the prediction of abnormal fetal karyotype).
(50.) Pergament, supra note 15, at 152.
(53.) Simona Cicero et al., Maternal Serum Biochemistry at 11-13 (+6) Weeks in Relation to the Presence or Absence of the Fetal Nasal Bone on Ultrasonography in Chromosomally Abnormal Fetuses: An Updated Analysis of Integrated Ultrasound and Biochemical Screening, 25 PRENATAL DIAGNOSIS 977, 977 (2005).
(54.) Kypros H. Nicolaides, Nuchal Translucency and Other First-Trimester Sonographic Markers of Chromosomal Abnormalities, 191 AM. J. OBSTETRICS & GYNECOLOGY 45, 57 (2004).
(55.) Pergament, supra note 15, at 153.
(56.) Allan S. Nadel & Marisa L. Likhite, Impact of First- Trimester Aneuploidy Screening in a High-Risk Population, 26 FETAL DIAGNOSIS & THERAPY 29, 29 (2009).
(57.) Kypros H. Nicolaides, Turning the Pyramid of Prenatal Care, 29 FETAL DIAGNOSIS & THERAPY 183, 183 (2011) (proposing that the traditional pyramid of care should be inverted, with the main emphasis placed in the first rather than third trimester of pregnancy); see also Joseph R. Wax et al., Biophysical and Biochemical Screening for the Risk of Preterm Labor, 30 PRENATAL SCREENING & DIAGNOSIS 693 (2010).
(58.) Nicolaides, supra note 57, at 183.
(60.) Pergament & Pergament, supra note 44.
(61.) See generally Pergament, supra note 15, at 151-52.
(62.) Joe Leigh Simpson, Invasive Procedures for Prenatal Diagnosis: Any Future Left?, 26 BEST PRACTICE & RESEARCH CLINICAL OBSTETRICS & GYNAECOLOGY 625, 625 (2012).
(63.) Id. at 626.
(64.) ISPD RAPID RESPONSE, supra note 38 (discussing the commercial availability of non-invasive tests based on the presence of cell-free fetal nucleic acids in paternal plasma in the United States, China, and Europe).
(65.) Pergament, supra note 15, at 154-55.
(66.) Id. at 154.
(67.) Id. at 154-55; see generally S. Hussain Askree & Madhuri R. Hegde, Array Comparative Genomic Hybridization in Cytogenetics and Molecular Genetics, in MOLECULAR GENETICS & PERSONALIZED MEDICINE 21, 27-28, (D. Hunter Best & Jeffrey J. Swensen eds., 2012).
(68.) See Andrew Pollack, Clinical Trial is Favorable for a Prenatal Test, N.Y. TIMES, Aug. 8, 2012, at B1.
(69.) Pergament, supra note 15, at 155.
(73.) See id. at 159.
(74.) The sensitivity of aCGH is also presenting other unique psychosocial challenges as the technology allows the routine use of chromosome analysis for determination of non-paternity and consanguinity and the detection of adult onset conditions. Id.
(75.) See id.
(76.) P. Benn et al., Non-Invasive Prenatal Diagnosis for Down Syndrome: The Paradigm Will Shift, but Slowly, 39 ULTRASOUND OBSTETRICS & GYNECOLOGY 127, 127 (2012).
(77.) Mark I. Evans & Michael Kilpatrick, Noninvasive Prenatal Diagnosis: 2010, 30 CLINICS LABORATORY MED. 655, 655 (2010) ("Looking for fetal cells and now nucleic acids has been the holy grail of prenatal diagnosis for more than a century.").
(78.) Cf. Peter A. Benn & Audrey R. Chapman, Practical and Ethical Considerations of Noninvasive Prenatal Diagnosis, 301 JAMA 2154, 2154 (2009) ("Noninvasive prenatal diagnosis differs from current approaches because all women would receive a definitive diagnosis immediately following the blood test.").
(79.) Although the discussion of clinical practice and procedures is dated, the essays that resulted from the National Institutes of Health Workshop "Reproductive Genetic Testing: Impact on Women," provide an excellent framework for understanding many of the ethical and social questions raised by prenatal testing. See generally WOMEN AND PRENATAL TESTING: FACING THE CHALLENGES OF GENETIC TECHNOLOGY (Karen H. Rothenberg & Elizabeth J. Thomson eds., 1994).
(80.) See, e.g., Sonia Mateu Suter, The Routinization of Prenatal Testing, 28 AM. J. L. & MED. 233, 234-37 (2002); see generally RUTH SCHWARTZ COWAN, HEREDITY AND HOPE: THE CASE FOR GENETIC SCREENING 12-116 (2008) (providing an overview of the history of both eugenics and genetic testing and supporting the use of genetic technologies).
(81.) Cf. Michael J. Malinowski, Choosing the Genetic Makeup of Children: Our Eugenics Past Present, and Future?, 36 CONN. L. REV. 125, 211-15 (2003).
(82.) R. Alto Charo & Karen Rothenberg, "The Good Mother": The Limits of Reproductive Accountability and Genetic Choice, in WOMEN & PRENATAL TESTING: FACING THE CHALLENGES OF GENETIC TECHNOLOGY 105, 114 (Karen H. Rothenberg & Elizabeth J. Thomson eds., 1994) ("Women are often subjected to communal, as well as personal, pressures to shape their reproductive decisions.").
(83.) Deborah Kaplan, Prenatal Screening and Diagnosis: The Impact on Persons with Disabilities, in WOMEN & PRENATAL TESTING: FACING THE CHALLENGES OF GENETIC TECHNOLOGY 49, 50 (Karen H. Rothenberg & Elizabeth J. Thomson eds., 1994) (outlining the three types of prevention that are given as reasons for utilizing prenatal testing).
(84.) See Mary Crossley, The Disability Kaleidoscope, 74 NOTRE DAME L. REV. 621, 649-67 (1999). There are some who would argue that a fourth model exists: disability as a culture with a distinct group identity, language, and rituals. See generally CAROL PADDEN & TOM HUMPHRIES, INSIDE DEAF CULTURE (2005); Daniela Caruso, Autism in the U.S.: Social Movement and Legal Change, 36 AM. J.L. & MED. 483, 537 (2010). The decision not to include this model in the overall discussion of disability is not intended as a judgment about Deaf culture or the "Aspie" movement. I question, however, the usefulness of distinguishing the cultural model from the social model.
(85.) Crossley, supra note 84, at 649-54.
(86.) Adam M. Samaha, What Good is the Social Model of Disability?, 74 U. CHI. L. REV. 1251, 1251 (2007).
(87.) Crossley, supra note 84, at 654-59 (discussing the social model of disability); see also Samuel R. Bagenstos, Subordination, Stigma, and "Disability", 86 VA. L. REV. 397, 427 (2000).
(88.) Samuel R. Bagenstos & Margo Schlanger, Hedonic Damages, Hedonic Adaption, and Disability, 60 VAND. L. REV. 745, 780 (2007).
(89.) Crossley, supra note 84, at 659-66.
(90.) Id. at 660-62.
(91.) Id. at 667.
(92.) Cf. Neal Halfon et al., The Changing Landscape of Disability in Childhood, 22 FUTURE OF CHILDREN 13, 15, 19-23 (2012) (providing a historical and statistical overview of the changing rates of disability and the evolution of notions of disability).
(93.) This critique is influenced by the work of Professor Ruth Colker who argues that "[t]he field of disability discrimination is undertheorized; it conflates "separate" and "unequal." Ruth Colker, Anti-Subordination Above All: A Disability Perspective, 82 NOTRE DAME L. REV. 1415, 1415 (2007). Professor Colker has theorized that an integrationist perspective has played "an important historical and structural role in helping to close some horrendous disability-only institutions" but fails to recognize that the government needs to retain some disability only services but protect against the coercive use of those facilities by developing policies that reflect an anti-subordination perspective. Id. at 1416-17. In the realm of special education, this is particularly important for the provision of high quality, effective services that reflect an equitable distribution of resources and educational expectations that emphasize educational gains. See id.
(94.) But see John F. Muller, Disability, Ambivalence, and the Law, 37 AM. J.L. & MED. 469, 508-13 (2011) (arguing that ambivalence pervades our encounters with disability and that the law should express this ambivalence rather than strive for abstract conceptual clarity). I disagree with Muller on several points, including his presentation of the disability rights movement as somewhat monolithic in its alignment with the political left, particularly on the issue of abortion. Moreover, I would argue that the law already evidences, albeit without the intentionality Muller advocates, an ambivalent view of disability and the role of children and adults with disabilities in society. By focusing on access and inclusion as the primary goals instead of the maximization of potential for independent functioning (at whatever level possible for the individual) while simultaneously withdrawing resources to support those who are dependent, we perpetuate an ambivalent view of the place of the disabled within our society and our responsibilities in addressing their needs.
(95.) See Isabel Karpin & Kristen Savell, PERFECTING PREGNANCY: LAW, DISABILITY & THE FUTURE OF REPRODUCTION 42 (2012) (noting "a uniform feminist response to prenatal testing technologies may be neither possible or desirable" because "these technologies are ... 'always potentially both' 'liberatory [and] socially controlling ... depending on the weight various social and individual experiences hold in a particular woman's life.'" (citation omitted)).
(96.) JEFFERSON HIMSELF: THE PERSONAL NARRATIVE OF A MANY-SIDED AMERICAN 324 (Bernard Mayo ed., 1942); see also Lifchez v. Hartigan, 735 F. Supp. 1361 (N.D. Ill.), aff'd 915 F.2d 260 (7th Cir. 1990), cert. denied sub nom Scholberg v. Lifchez, 498 U.S. 1069 (1991) (holding that the constitutional right to privacy protects a couple's decision to use genetic diagnostic tests on a conceptus, including embryo biopsy). "[W]ithin the cluster of constitutionally protected choices ... must be ... the right to submit to a medical procedure [to obtain information about the fetus through prenatal testing,] which can lead to a decision to abort." Id.
(97.) See, e.g., GENERATIONS AHEAD, BRIDGING THE DIVIDE: DISABILITY RIGHTS AND REPRODUCTIVE RIGHTS AND JUSTICE ADVOCATES DISCUSSING GENETIC TECHNOLOGIES 4 (2009) (discussing "fetal anomalies" as a justification for supporting abortion rights). The fetal anomaly argument has been criticized as justifying eugenic thinking. Id. Another criticism reflects inherent tensions within the feminist community resulting from claims of moral superiority by women who have abortions after prenatal diagnosis over women who have abortions for other reasons. See Roberts, supra note 2, at 1358-59 (distinguishing the "fetal defect" argument from other feminist prochoice claims). "This perverse moral distinction between ordinary and so-called 'medical abortion' reinforces the reproductive stratification that separates women whose childbearing is punished from those whose childbearing is technologically promoted by distinguishing even between the kinds of abortions they have." Id. at 1359.
(98.) Karen H. Rothenberg & Elizabeth J. Thomson, Women and Prenatal Testing: An Introduction to the Issues, in WOMEN AND PRENATAL TESTING: FACING THE CHALLENGES OF GENETIC TECHNOLOGY 1, 1-2 (Karen H. Rothenberg & Elizabeth J. Thomson eds., 1994); see Charo & Rothenberg, supra note 82, at 107-09 (describing how choice may be illusory for many women because of the pressures that may be exerted on them regarding their reproductive decisions).
(99.) Chato & Rothenberg, supra note 82, at 107 ("A woman's decision to conceive, abort, or bear a child with genetic disorders may be subject to questions of personal, as well as communal accountability.").
(100.) See Mary B. Mahowald, Genetic Technologies and Their Implications for Women, 3 U. CHI. L. SCH. ROUNDTABLE 439, 445-46 (1996) ("Chief among the material factors that affect women significantly are those that limit the availability of genetic services.... Because of their financial inability to follow-through on test results, some poor women decline to avail themselves of genetic tests and counseling where the costs would be covered by others.").
(101.) LORI B. ANDREWS, FUTURE PERFECT: CONFRONTING DECISIONS ABOUT GENETICS 80-81, 90-103 (2001).
(102.) See generally Kimberly Kristin Downing, A Feminist Is A Person Who Answers "Yes" to the Question, "Are Women Human?": An Argument Against the Use of Preimplantation Genetic Diagnosis for Gender Selection, 8 DEPAUL J. HEALTH CARE L. 431 (2005).
(103.) The discussions about the responsibilities of parents to provide children with a right to an open future considers several implications of prenatal genetic testing, including the use of preimplanation genetic diagnosis to have a child with a particular disability so that the child be part of their own culture or community, and the constraints that should be placed on these choices through public policy and tort liability. See generally Dena S. Davis, Genetic Dilemmas and the Child's Right to an Open Future, 28 RUTGERS L.J. 549, 555, 559-67 (1997) (discussing these issues within the context of Feinberg's concept of "the child's right to an open future").
(104.) ANDREWS, supra note 101, at 103-06 (discussing protecting the right to refuse genetic testing). It is important to note the emergence of a corollary issue; state laws providing tort immunity to physicians who deliberately withhold information from patients to prevent abortions. These laws allow physicians to withhold results obtained from maternal serum screenings, ultrasounds, CVS, amniocentesis, or noninvasive prenatal testing if the physician believes the woman may have an abortion. Such a law been enacted in Arizona. See S.B. 1359, 50th Leg., 2nd Reg. Sess. (Ariz. 2012). This law may have unintended consequences, including inappropriate management of pregnancies because a woman will not be prepared for the delivery of a newborn with complications resulting from an undisclosed disability.
(105.) See Charo & Rothenberg, supra note 82, at 107-14, 117-22.
(106.) See Kimberly M. Mutcherson, Making Mommies: Law, Pre-Implantation Genetic Diagnosis, and the Complications of Pre-Motherhood, 18 COLUM. J. GENDER & L. 313, 324 (2008).
(107.) Abby Lippman, The Genetic Construction of Prenatal Testing: Choice, Consent, or Conformity, in WOMEN & PRENATAL TESTING: FACING THE CHALLENGES OF GENETIC TECHNOLOGY 105, 114 (Karen H. Rothenberg & Elizabeth J. Thomson eds., 1994) (discussing how prenatal testing is viewed within other established behaviors that connote responsible mothering).
(108.) Mary B. Mahowald, Aren't We All Eugenicists? Commentary on Paul Lombard's "Taking Eugenics Seriously", 30 FLA. ST. U. L. REV. 219, 227-29 (2003).
(109.) Id. at 229.
(110.) Cf. id. (stating a formulation of prenatal testing that a single trait standing for a whole obliterates the whole with "no need to find out about the rest" (internal quotation omitted)). But see Janet Malek, Deciding Against Disability: Does the Use of Reproductive Genetic Technologies Express Disvalue for People with Disabilities?, 36 J. MED. ETHICS 217, 217 (2010) (arguing the expressivist objection is misguided and that the use of reproductive genetic technologies to prevent disability in future children does not convey a negative message about those with disabilities).
(111.) See Adrienne Asch, Disability Equality and Prenatal Testing: Contradictory or Compatible?, 30 FLA. ST. U. L. REV. 315-16 (2003).
(112.) See generally Marsha Saxton, Disability Rights and Selective Abortion, in ABORTION WARS: A HALF CENTURY OF STRUGGLE, 1950-2000 (Rickie Solinger ed., 1998).
(113.) Asch, supra note 111, at 320-21 (citing Peter Singer, Severe Impairment and the Beginning of Life, 99 APA NEWSL. PHI. & MED. 246, 247-48 (2000)).
(114.) See id.
(115.) Id. at 333 (citing Adrienne Asch, Why I Haven't Changed My Mind About Prenatal Diagnosis: Reflections and Refinements, in PRENATAL TESTING AND DISABILITY RIGHTS 234 (Erik Parens & Adrienne Asch eds., 2000)).
(116.) Id. at 316 ("[M]ost people seek in child rearing ... 'to give ourselves to a new being who starts out with the best we can give, and who will enrich us, gladden others, contribute to the world, and make us proud." (quotation omitted).
(117.) Pollack, supra note 3.
(119.) Amy Harmon, Prenatal Test Puts Down Syndrome in Hard Focus, N.Y. TIMES, May 9, 2007, at Al.
(120.) Pollack, supra note 3.
(122.) See Tay-Sachs Disease, A.D.A.M. MEDICAL ENCYCLOPEDIA, http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002390/(last updated Nov. 17, 2010) (defining Tay-Sachs disease as a "deadly disease of the nervous system passed down through families").
(123.) See Spinal Muscular Atrophy, A.D.A.M. MEDICAL ENCYCLOPEDIA, http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001991/(last updated Feb. 1, 2012) (defining spinal muscular atrophy as a "group of inherited diseases that cause muscle damage and weakness, which get worse over time and eventually lead to death").
(124.) See Sonia M. Suter, A Brave New World of Designer Babies?, 22 BERKELEY TECH. L.J. 897, 966 (2007); see also Bonnie Steinbock, Disability, Prenatal Testing, and Selective Abortion, in PRENATAL TESTING AND DISABILITY RIGHTS 108, 109 (Erik Parens & Adrienne Asch eds., 2000) (noting that even many of those "who are almost always opposed to abortion" will accept it in cases involving "a severe disability in the fetus").
(125.) Suter, supra note 124.
(126.) Asch, supra note 111, at 322-23 n.9.
(127.) See Eveline H. Shue et al., Maternal-Fetal Surgery: History and General Considerations, 39 CLINICS PERINATOLOGY 269, 269 (2012). In discussing the issues and questions raised by this Article, it is important to consider that fetal surgery for spina bifida is not curative; successful outcomes ameliorate the severity of life-long impairments. Children born after these procedures will often still require early intervention therapeutic and special education services. See Enrico Danzer et al., Fetal Myelomeningocele Surgery: Preschool Functional Status Using the Functional Independence Measure for Children (WeeFIM), 27 CHILD'S NERVOUS SYS. 1083 (2011).
(128.) Several organizations provide information and resources for families seeking to make adoption plans for a child with Down syndrome and families seeking to adopt a child with Down syndrome. See, e.g., National Down Syndrome Adoption Network, DOWN SYNDROME ASS'N OF GREATER CINCINNATI, http://dsagc.com/programs_adoption.asp (last visited Feb. 18, 2013).
(129.) Abby Lippman, Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequities, 17 AM. J.L. MED. 15, 39 (1991).
(130.) See also Rapp & Ginsburg, supra note 29, at 390 (describing the striking gender differences among mothers and fathers regarding changing work trajectories and involvement in efforts to support their child's differences).
(131.) See Philip N. Cohen & Mriuna Petrescu-Parhova, Gendered Living Arrangements of Children with Disabilities, 68 J. MARRIAGE & FAMILY 630, 635 (2006) (finding that based on data on disabilities from the 2000 Census, children (aged five to fifteen years) with disabilities live disproportionately with women and are more likely to live with their single parent mothers).
(132.) See Mark Stabile & Sara Allin, The Economic Costs of Childhood Disability, 22 FUTURE OF CHILDREN 65, 69-78 (2012); see also PETER D. BRANDON & DENNIS P. HOGAN, THE EFFECTS OF CHILDREN WITH DISABILITIES ON MOTHERS' EXITS FROM WELFARE 3, 14 (2001); Karen Syma Czapanskiy, Disabled Kids and Their Moms: Caregivers and Horizontal Equity, 19 GEO. J. ON POVERTY LAW & POL'Y 43, 46 (2012) (analyzing the socio-economic causes of the inequities experienced by families of children with disabilities).
(133.) Harmon, supra note 119, at A22; see also ACOG Practice Bulletin No. 88, supra note 39; ACOG Practice Bulletin No. 77, supra note 39, at 219.
(134.) See Brian G. Skotko, With New Prenatal Testing, Will Babies with Down Syndrome Slowly Disappear?, 94 ARCHIVES OF DISEASE IN CHILDHOOD 823, 825 (2009) ("Parents who have children with DS have already found much richness in life with an extra chromosome. Now is the time for the rest of us to discuss the ethics of our genetic futures.").
(135.) Catriona Hippman et al., What Is a "Balanced" Description? Insight from Parents of Individuals with Down Syndrome, 21 J. GENETIC COUNSELING 35 (2011).
(136.) S. 1810, 110th Cong. (2007).
(137.) See S. 1810 (110th): Prenatally and Postnatally Diagnosed Conditions Awareness Act, GOVTRACK, http://www.govtrack.us/congress/bills/ 110/s1810 (last visited Feb. 18, 2013).
(138.) Rebecca Dresser, Prenatal Testing & Disability: A Truce in the Culture Wars?, HASTINGS CENTER REP., Mar. 2009, 7-8 (discussing the collaboration and compromise that resulted in the Act's passage).
(139.) Prenatally and Postnatally Diagnosed Conditions Awareness Act, Pub. L. No. 110-374, 122 Stat. 4501 (codified at 42 U.S.C. [section][section] 201,280g-8).
(140.) See Kathryn B. Sheets et al., Practice Guidelines for Communicating a Prenatal or Postnatal Diagnosis of Down Syndrome: Recommendations of the National Society of Genetic Counselors, 20 J. GENETIC COUNSELING 432,436 (2001) (citing the Prenatally and Postnatally Diagnosed Condition Awareness Act of 2008 in providing practice guidelines for genetic counselors); see also Devers et al., supra note 37.
(141.) Cf. Dresser, supra note 138, at 7.
(142.) See id. at 8.
(143.) The term "restrict" is an intentional acknowledgement that even as the Court has whittled away at the right to abortion over the last two decades, the core right to choose an abortion remains protected. See Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833, 840-41 (1992) (upholding certain restrictions on a woman's right to access abortion including forced waiting period and informed consent requirements); Gonzales v. Carhart, 550 U.S. 124, 168 (2007) (upholding a Congressional ban on a second-trimester abortion procedure termed "partial birth abortion").
(144.) See, e.g., S.D. CODIFIED LAWS [section] 34-23A-10.1(e)(i)-(ii) (2005) (requiring physicians to advise women seeking abortions that they face an increased risk of suicide and suicidal thoughts if they obtain the procedure); see also Planned Parenthood Minnesota v. Rounds, 683 F.3d 889, 905-06 (8th Cir. 2012) (holding that requiring disclosure to patients seeking an abortion of an increased risk of suicide ideation and suicide was constitutional because the suicide advisory was non-misleading and relevant to the patient's decision to have an abortion, therefore it did not violate physicians' free speech rights). Cf. Vignetta E. Charles, et al., Abortion and Long-term Mental Health Outcomes: A Systemic Review of the Evidence, 78 CONTRACEPTION 436 (2008) (suggesting "few, if any, differences between women who had abortions and their respective comparison groups in terms of mental health sequelae").
(145.) See, e.g., TEX. HEALTH & SAFETY CODE ANN. [section] 171.012 (West 2012), requires that a pregnant woman certify in writing her understanding that (1) Texas law requires an ultrasound prior to obtaining an abortion, (2) she has the option to view the sonogram images, (3) she has the option to hear the fetal heartbeat, and (4) she is required to hear the medical explanation of the sonogram unless she falls under the narrow exceptions to this requirement. The three exceptions are (1) pregnancy as a result of rape or incest which has been reported or, if it has not been reported, was not reported because the woman reasonably risks retaliation resulting in serious bodily injury, (2) a minor taking advantage of judicial bypass procedures to avoid parental notification, or (3) a fetus with an irreversible medical condition or abnormality. If seeking to avoid the description of the sonogram images, the woman must indicate within which exception she falls. But compare Carolyn Jones, We Have No Choice: One Woman's Ordem with Texas' New Sonogram Law, TEXAS OBSERVER, Mar. 15, 2012 (describing a personal experience of being compelled to undergo a sonogram and read and listen to information about fetal development and abide by a waiting period before an abortion of a fetus with a lethal anomaly because the medical
personnel did not know that the diagnosis of a fetal anomaly excused compliance with the newly enacted measure).
(146.) See, e.g., ALA. CODE [section] 26-23B-2(5) (2011) (finding that a fetus feels pain after twenty weeks and subjecting a fetus to painful stimuli may cause disabilities later in life); Pain-Capable Unborn Child Protection Act, 2013 ARK. ACTS 171 (banning abortions for women past twelve weeks of pregnancy), ARK. CODE ANN. [section] 20-16-1104 (West 2011) (requiring the physician notify the patient of potential risk of the surgery as well as the availability of anesthetics to reduce the pain of the fetus); IDAHO CODE ANN. [section] 18-503(5) (2011) (finding that anesthesia is used to reduce the pain of the fetus during surgical procedures); MINN. STAT. ANN. [section] 145.4242 (West 2011) (stating that consent is only determined after, among other requirements, the female is given notice of the availability of anesthetics to reduce the pain of the fetus); MO. ANN. STAT. [section] 188.027 (West 2012) (requiring the physician to notify the patient that anesthetic is available to alleviate pain to the fetus during the procedure); NEB. REV. STAT. [section][section] 28-3, 104-05 (2010) (finding that an unborn fetus feels pain after twenty weeks, anesthesia will reduce the pain felt during a medical procedure, and a doctor must notify the patient of these facts before performing the procedure); OKLA. STAT. ANN. tit. 63, [section] 1-738.9 (2006) (requiring the physician to notify the patient if anesthetics would reduce the pain of the fetus during the procedure).
(147.) See, e.g., S.B. 1359, 50 Leg., 2nd Reg. Sess. (Ariz. 2012); Amz. REV. STAT. [section] 12-719 (relieving physicians from liability for damages based on a claim that but for an actor omission of the defendant, a child or children would not or should not have been born).
(148.) See Gonzales v. Carhart, 550 U.S. 124, 171 (2007) (Ginsburg, J., dissenting) ("[A]t stake in cases challenging abortion restrictions is a woman's 'control over her [own] destiny.'"). A comprehensive discussion of the issue of the intersection of prenatal genetic testing and abortion and the related relationship between technological innovations in prenatal testing and current law and practice is beyond the scope of this Article. For such discussion, see Rachel Rebouche & Karen Rothenberg, Mixed Messages: The Intersection of Prenatal Testing and Abortion, 55 How. L.J. 983, 986 (2012).
(149.) Mahowald, supra note 108, at 232.
(150.) But cf. Dov Fox & Christopher L. Griffin, Jr., Disability-Selective Abortion and the Americans with Disabilities Act, UTAH L. REV. 845 (2009). Professors Fox and Griffin argue that the public meaning of particular practices can interact with existing norms to generate "expressive externalities" on social relations and behaviors. They suggest that the ADA may have encouraged prospective parents to terminate pregnancies affected by Down syndrome by giving rise to demeaning media depiction and social conditions that reinforced negative understandings and expectations among prospective parents about what it means to have a child with a disability. They do not claim to have detected a causal statistical relationship between the ADA and changes in the Down syndrome birthrate and acknowledge that "[t]he absence of data on actual Down-selective terminations and of comprehensive interview responses by prospective parents who face this decision caution against drawing broad conclusions." Id. at 847, 883. Nevertheless, they argue that the statistical evidence is suggestive of a correlation of the impact of disability-selective abortion and may give reason to advance public education campaigns to correct misleading social perceptions. Id. at 871, 893. I find Professors Fox and Griffin's arguments intriguing and appreciate their acknowledgement that their "findings [do not] justify restrictions on a woman's constitutional right to terminate a pregnancy for any reason, at least until the third trimester." Id. at 893. But, I would argue that even more caution is required as suggested by their own caveat that a complex array of legal, material, economic, technological, social, familial, and medical factors might reasonably inform prenatal testing and selective abortion for Down syndrome indicates the limits of formal law in creating a causal connection between the dissemination of information either in public information campaigns or in individual private consultations by women with their health care providers and any resulting individual private action. See id. at 883-85. Their analysis also conflicts with my own experience advising health care professionals developing policies and procedures for counseling patients undergoing prenatal testing, representing families of children with genetic disorders, and observing the highly personal and complex factors that contribute to the decision to terminate a pregnancy diagnosed with Down syndrome or another genetic disorder. In Professors Fox and Griffin's own words, "[a] skeptical reader might even accept [or at least find them carefully developed and well-argued] our statistical findings but still not agree with our narrative premise." Id. at 871. I also disagree with their emphasis on supplementing the passage of certain civil rights laws with public education campaigns on behalf of the protected group in question as a way of securing the promise of civil rights and self-respect for those in need of the law's protection. See id. at 893. While public education campaigns are a worthy endeavor, the externality that would result in measurable differences in the life experience of children and adults with disabilities is the allocation of public resources and health, education, and social services.
(151.) Wendy F. Hensel, Vouchers for Students with Disabilities: The Future of Special Education?, 39 J.L. & EDUC. 291, 327 (2010).
(152.) See Teresa Scruton, Bardet Biedel Syndrome (BBS), ORPHAN DISEASE NETWORK, http://www.orphandiseasenetwork.org/ ciliopathies-bbs-meckel-gruber-joubert-jeune-lca-nphp/bardet-biedl-syndrome-bbs/(last visited Feb. 17, 2013) ("[T]he issue that worried caregivers the most was ... management and nutrition, with 66% reporting this concern. Closely following weight management were concerns for their child's education (53%)....").
(153.) See Cohen & Petrescu-Parhova, supra note 131, at 630-31.
(154.) See generally Individuals with Disabilities Education Act, 20 U.S.C. [section] 1400 et seq. (2006).
(155.) See Erin Phillips, When Parents Aren't Enough: External Advocacy in Special Education, 117 YALE L.J. 1802, 1828 n.127 (2008) ("[T]he IDEA assumes that parents are willing to make the extra effort to participate in the special education process. There are certainly families in which, for whatever reason, the parent will not be sufficiently motivated to fight for a FAPE for his child."). There are also certainly families in which, for reasons including lack of personal motivation and external forces such as poverty, parental disability, illiteracy, that the parent will not be able to marshal the resources necessary to advocate for their child.
(156.) Individuals with Disabilities Education Act (IDEA), 20 U.S.C. [section] 1401(3)(A)(i), (B)(i) (2006).
(157.) 20 U.S.C. [section] 1400(d)(1)(A) (2006); 34 C.F.R. [section] 300.8(a) (2012).
(158.) "In 2006, a total of 6,081,890 students ages six through twenty-one were served under IDEA, Part B." DEPARTMENT OF EDUCATION, 30TH ANNUAL REPORT TO CONGRESS ON THE IMPLEMENTATION OF THE INDIVIDUALS WITH DISABILITIES EDUCATION ACT, at xx (2008). "Of these students, 5,986,644 were served in the 50 states, the District of Columbia and Bureau of Indian Education schools." Id. This number represented 9.1 percent of the general population ages six through twenty-one. Id.
(159.) The fact that the number of children considered disabled by public schools systems has increased despite increasing use of prenatal genetic testing has not yet entered the debates over prenatal genetic testing and reproductive choice. A discussion of this important topic and the potential consequences for the development of legislation affecting both pregnant women and children with disabilities enrolled in public schools is beyond the scope of this Article but should receive future attention from legal scholars, geneticists and genetic counselors, and other academic disciplines.
(160.) See Paul H. Wise, Emerging Technologies and Their Impact on Disability, 169 FUTURE OF CHILDREN 169, 174 (2012).
(161.) See Laudan Aron & Pamela Loprest, Disability and the Education System, 22 FUTURE OF CHILDREN 97, 102 (2012).
(162.) By contrast, another cynical explanation, popular among conservative social critics, is that social changes have resulted in destigmatizing disability among affluent parents. These parents now purposely have their children diagnosed with learning disabilities to obtain advantages such as extended Time on college admissions tests. See Wade F. Horn & Douglas Tynan, Time to Make Special Education "Special" Again, in RETHINKING SPECIAL EDUCATION FOR A NEW CENTURY 23, 28-31 (Chester E. Finn et al. eds., 2001).
(163.) See [section] 20 U.S.C. 1400(c)(2)(A)-(D) (2006) (providing a brief overview of the history of the exclusion of children with disabilities from public schools).
(164.) MARK C. WEBER, SPECIAL EDUCATION LAW AND LITIGATION TREATISE 1:2 (3d ed. Supp. 2010) (summarizing court decisions allowing for the exclusion of children with disabilities from the public schools); see also Watson v. City of Cambridge, 132 N.E. 864, 864-865 (Mass. 1893) (upholding the expulsion from public school of a child considered "weak minded"); State ex rel. Beattie v. Board of Educ., 172 N.W. 153, 154-55 (Wis. 1919) (approving the exclusion from public schools a boy who had drooled uncontrollably, displayed facial contortions, and had a speech impairment); Dep't of Pub. Welfare v. Haas, 154 N.E.2d 265, 270 (Ill. 1958) (finding that existing state laws requiring compulsory schooling did not require that children with disabilities receive a free public education).
(165.) Edwin W. Martin et al., The Legislative and Litigation History of Special Education, 6 FUTURE OF CHILDREN 25, 25-27 (1996) (discussing the historical background of the Individuals with Disabilities Education Act).
(166.) Cf. id. at 26-27.
(167.) 20 U.S.C. [section] 1412 (a)(3)(A) (2006).
(168.) Timothy W. v. Rochester Sch. Dist., 875 F.2d 954, 960 (1st Cir. 1989); Thomas v. Cincinnati Bd. of Educ., 918 F.2d 618, 620 (6th Cir. 1990).
(169.) See generally WEBER, supra note 164,at 1:1-1:5 (summarizing court decisions allowing for the exclusion of children with disabilities from the public schools).
(170.) 343 F. Supp. 279, 279 (E.D. Pa. 1972).
(172.) 348 F. Supp. 866, 866 (D.D.C. 1972).
(173.) Id. at 876.
(175.) Jon Romberg, The Means Justify the Ends: Structural Due Process in Special Education Law, 48 HARV. J. ON LEGIS. 415, 423 (2011) (quoting Board of Educ. v. Rowley, 458 U.S. 176, 193-94 (1982)).
(176.) Martin et al., supra note 165, at 28-29 (discussing the historical background of the Individuals with Disabilities Education Act).
(177.) Education for All Handicapped Children Act of 1975, Pub. L. No. 94-142, 89 Stat. 773 (1975); see also Education of the Handicapped Act Amendments of 1990, Pub. L. No. 101-476, 104 Stat. 1103, 1141-42 (1990) (renaming the EAHCA as the Individuals with Disabilities Education Act (IDEA)).
(178.) Martin et al., supra note 165, at 30 (citing President Gerald R. Ford, Statement on Signing the Education for All Handicapped Children Act of 1975 (Dec. 2, 1975)).
(179.) Id. at 29.
(180.) Hensel, supra note 151, at 291.
(182.) 20 U.S.C. [section] 1400(c)(12)(B) (2006). Although 15 percent of students nationwide are African-American, African-American children comprise 20 percent of the special education population. Rebecca Vallas, The Disproportionality Problem: The Overrepresentation of Black Students in Special Education and Recommendations for Reform, 17 VA. J. Soc. POL'Y & L. 181, 184 (2009). But see Jonathan Feldman, Racial Perspectives on Eligibility for Special Edueation: For Students of Color Who Are Struggling, Is Special Education a Potential Evil or a Potential Good? 20 AM. U. J. GENDER SOC. POL'Y & L. 183, 186-87, 190 (2011). Professor Feldman argues that that the disproportionality perspective is of limited utility and reflects a critique of institutionalized racism that was horrific and historically significant but not currently relevant to the needs of students, particularly in urban districts, where the vast majority of students are often students of color.
(183.) 20 U.S.C. [section] 1400(e)(12)(C) (2006).
(184.) See Chester E. Finn et al., Conclusions and Principles for Reform, in RETHINKING SPECIAL EDUCATION FOR A NEW CENTURY 30-31 (Chester E. Finn et al. eds., 2001).
(185.) See generally Patrick J. Wolf & Bryan C. Hassel, Effectiveness and Accountability (Part 1): The Compliance Model, in RETHINKING SPECIAL EDUCATION FOR A NEW CENTURY 53, 53 (Chester E. Finn et al. eds., 2001) (discussing the existing model of compliance accountability in assessing the effectiveness of special education); Bryan C. Hassel & Patrick J. Wolf, Effectiveness and Accountability (Part 2): Alternatives to the Compliance Model, in RETHINKING SPECIAL EDUCATION FOR A NEW CENTURY 309, 309 (Chester E. Finn et al. eds., 2001) (proposing alternative ways to measure effectiveness of special education programs and incentive programs with a market-oriented focus intended to improve special education outcomes).
(186.) See generally Mark C. Weber, The IDEA Eligibility Mess, 57 BUFF. L. REV. 83, 102-22 (2009) (discussing the confusion over recent court cases that reached conflicting conclusions about how much adverse education impact the child's disability must have and when children with emotional disabilities are eligible).
(187.) See Ruth Colker, The Disability Integration Presumption: Thirty Years Later, 154 U. PA. L. REV. 789, 796 (2006) (challenging the integration presumption by arguing for some children the empirical literature demonstrates that it hinders the development of an appropriate individualized educational program as required by the IDEA). But see Mark C. Weber, A Nuanced Approach to the Disability Integration Presumption, 156 U. PA. L. REV. PENNUMBRA 174, 174-75 (2007 (contending that the integration presumption should be the rule in absence of other evidence based on which party is arguing for or against the presumption; that separate classes should be used only when supplemental services cannot make general education work for a given child; and that services should be broadly defined to include such things as co-teaching by special education professionals, aide services, assistive technology, behavior intervention, and initiatives to prevent harassment and mistreatment by teachers and peers).
(188.) The cost of special education compared to regular education is the subject of significant controversy and is extremely difficult to quantify. Costs and spending are dependent on many variables due to regional differences and differences in needs across disabilities. Moreover, states are not obligated to give detailed state and local breakdowns of special education spending to the federal government. See Laudan Aron & Pamela Loprest, Disability and the Education System, 22 FUTURE OF CHILDREN 97, 109-11 (2012) (providing an overview of the funding mechanism for IDEA and the controversies surrounding federal and state funding structures for special education programs). One of the most respected studies found that in the 1999-2000 school year, schools spent 90 percent more on the average school-age special education student (including general and special education funding) than on the average general education student. See J.G. Chambers et al., Special Education Spending Estimates from 1969-2000, 18 J. SPECIAL EDUCATION LEADERSHIP 5, 5-13 (2005).
(191.) Id. (noting that the ARRA provided an additional $11.3 billion in grants to states under IDEA Part B in 2009).
(193.) Id. at 100 ("Significant influences include the standards-based reform movement, which led to and was then accelerated by the federal No Child Left Behind law of 2002; the school choice and public charter school movement; and the growing need for "alternative" schools and programs for students who for a variety of reasons are not succeeding in regular public schools.").
(195.) See, e.g., ROMNEY: BELIEVE IN AMERICA, A CHANCE FOR EVERY CHILD: MITT ROMNEY'S PLAN FOR RESTORING THE PROMISE OF AMERICAN EDUCATION 3-4, 5-9, 19-28 (2012) (delineating a federal K-12 education policy that emphasizes parental choice, charter schools, voucher/scholarships, and local control); see also David Stout, Obama Outlines Plan for Education Overhaul, N.Y. TIMES, Mar. 11, 2009, at A14.
(196.) See Harrison, supra note 28 (providing an overview of the market approach to organizing elementary and secondary education systems).
(197.) See Martin A. Kotler, The Individuals with Disabilities Education Act: A Parent's Perspective and Proposal for Change, 27 U. MICH. J.L. REFORM 331, 341 (1994); Phillips, supra note 155, at 1828; see also Miriam Kurtzig Freedman, Special Education: Its Ethical Dilemmas, Entitlement Status, and Suggested Systemic Reforms, U. CHI. L. REV., 1, 7, 16-17, 20, https://lawreview.uchicago.edn/sites/lawreview.uchicago.edu/files/ uploads/79_1/Freedman.pdf (last visited Feb. 15, 2013).
(198.) 20 U.S.C. [section] 1400(d)(1)(A) (2006).
(199.) The statutory text references local education agencies (LEAs), which are defined to include school boards. [section] 1401(19)(A)
(200.) [section] 1401(9) ("The term 'free appropriate public education' means special education and related services that (A) have been provided at public expense, under public supervision and direction, and without charge, (B) meet the standards of the State educational agency, (C) include an appropriate preschool, elementary school, or secondary school education in the State involved, and (D) are provided in conformity with the individualized education program required under section 1414(d) of this title.").
(201.) [section] 1414(d)(i)(h).
(202.) [section] 1414(d)(1)(i)(i).
(203.) [section] 1414(d)(4)(A).
(204.) [section] 1412(a)(5)(i).
(205.) [section] 1412(a)(5).
(206.) 458 U.S. 176 (1982).
(207.) Id. at 206.
(208.) Id. at 215 (1982) (White, J., dissenting).
(209.) Id. Rowley remains the Supreme Court's sole pronouncement on the meaning of the public schools' duty to provide appropriate education to children with disabilities as mandated by the Individuals with Disabilities Education Act (IDEA) and its predecessors. Although the Court cautioned that its decision was limited to facts similar to those before it, lower courts have applied Rowley's interpretation of the law to almost all other special education disputes. Over thirty years after the decision, what was meant by "basic access" and "meaningful benefit" remains in dispute, and Rowley's continued relevance for determining policy and guiding decisions made by lower courts is being questioned. See generally Andrea Kayne Kaufman & Evan Blewett, When Good Enough is No Longer Good Enough: How the High Stakes Nature of the No Child Left Behind Act Supplemented the Rowley Definition of a Free Appropriate Public Education, 41 J.L. & EDUC. 5 (2012).
(210.) Id. at 206-07.
(212.) Eloise Pasachoff, Special Education, Poverty, and the Limits of Private Enforcement, 86 NOTRE DAME L. REV. 1413, 1422 (2011) (describing the structural components of the IDEA and the Act's private enforcement system).
(213.) Rowley, 458 U.S. at 713- 14.
(214.) Pasachoff, supra note 212, at 1417.
(217.) Charles P. Fox, a Chicago area special education attorney and former director of the DePaul College of Law Special Education Advocacy Clinic, terms these practices "educational advocacy redlining." Mr. Fox has observed that special education directors often use parents' addresses and property tax rates to assess whether they have resources to mount a legal challenge against a school district. See Charles Fox, School District's Gathering Information on Parents, SPECIAL EDUC. L. BLOC (Feb. 9, 2011, 12:01 AM), http://blog.foxspecialedlaw.com/2011/02/page/2/; see also Valerie Leiter & Marty Wyngaarden Krauss, Claims, Barriers, and Satisfaction: Parents' Requests for Additional Special Education Services, 15 J. DISABILITY POL'Y STUD. 135, 143 (2004) (hypothesizing that families living in poverty could be more likely to report barriers to additional special education services because school personnel perceive them as not having the financial or time resources to contest schools' refusals of additional services or reflect the limitations on funding in school districts with high poverty rates).
(218.) Pasachoff, supra note 212, at 1424-34.
(219.) Id. at 1426; see also Margaret M. Wakelin, Challenging Disparities in Special Education: Moving Parents from Disempowered Team Members to Ardent Advocates, 3 NW. J.L. & SOC. POL'Y 263, 277 (2008) (describing the difficulties parents face obtaining affordable legal representation in special education matters).
(220.) Pasachoff, supra note 212, at 1426-28.
(221.) 548 U.S. 291, 300 (2006).
(222.) See Perry A. Zirkel & Gina Scala, Due Process Hearing Systems Under the IDEA: A State-by-State Survey, 21 J. DISABILITY POL'Y STUD. 3, 4-5 (2010) (reporting 2,033 adjudicated hearings in 2008-2009 with four states (New York, California, New Jersey, Pennsylvania) and the District of Columbia accounting for 85 percent of the total adjudicated hearings).
(223.) Cf. Muller, supra note 94, at 512.
(224.) Olga Pribyl, Leveling the Playing Field: Helping Children with Special Education Needs, 23 CBA REC. 42, 42 (2009).
(225.) Professor David Engel analyzed a 1988-1989 study that found that parents feel inadequate and unqualified in special education situations across socioeconomic and other demographic classes. The study is now over twenty years old, but these descriptions closely match the current culture and climate surrounding the IEP process. See David M. Engel, Law, Culture, and Children with Disabilities: Educational Rights and the Construction of Difference, DUKE L.J. 166, 188 (1991).
(226.) Daniela Caruso, Bargaining and Distribution in Special Education, 14 CORNELL J.L. & PUB. POL'Y 171, 177 (2005).
(227.) Id. at 177.
(229.) Pribyl, supra note 224, at 42.
(230.) Since the 2004 revision of the IDEA, school districts and states that prevail at due process hearings are able to recover attorneys' fees against parents when the complaints are "frivolous, unreasonable, or without foundation." See Jessica Butler-Arkow, The Individuals with Disabilities Education Improvement Act of 2004: Shifting School Districts' Attorney's Fees to Parents of Children with Disabilities and Counsel, 42 WILLIAMETTE L. REV. 527, 527-28 (2006) (providing an overview of the IDEA provisions involving fee shifting to parents and their counsel). Some commentators have argued that this addition to the provision may further discourage attorneys' representation of parents in possibly worthy, challenges under the IDEA. See, e.g., Wakelin, supra note 219, at 282.
(231.) Cf. Charles Fox, Retaliation Against Parents for Advocating: An Emerging Trend, SPECIAL EDUC. L. BLOG (July 5, 2012, 12:45 PM), http://blog.foxspecialedlaw.com/2012/07/index.html (discussing the misperceptions of school districts when they equate parents who are anxious, exhausted, and very frightened as being difficult and angry); see generally Retaliation: A Primer and The Retaliation Triangle, WRIGHTSLAW (last updated Aug. 24, 2012), http://www.wrightslaw.com/info/retal.primer.htm (providing an overview of retaliatory practices engaged in by some school districts to scare parents and reduce their advocacy).
(232.) See Jennifer Laviano, The Sudden Blossoming of the Represented Child, CONN. SPECIAL EDUC. LAW. (July 31, 2009), http://www.connecticutspecialeducationlawyer.com/blog/occasionalrants /the-sudden-blossoming-of-the-represented-child (describing how school districts will present documentary evidence during IEP meetings that a child has "blossomed" and made significant educational and behavioral progress after a parent retains an attorney).
(233.) Roneker ex rel. Roncker v. Walter, 700 F.2d 1058, 1063 (6th Cir. 1983) ("The [IDEA] does not require mainstreaming in every case but its requirement that mainstreaming be provided to the maximum extent appropriate indicates a very strong congressional preference.").
(234.) 20 U.S.C. [section] 1412(a)(10)(C)(i-ii) (2006).
(235.) See Ruth Colker, The Disability Integration Presumption: Thirty Years Later, 154 U. PA. L. REV. 789, 825 (2006).
(236.) See Jay P. Greene & Marcus A. Winters, Debunking a Special Education Myth: Don't Blame Private Options for Rising Costs, 67 EDUC. NEXT 67, 68, 70 (2007). A review of US Department of Education data suggests that Professor Greene and Mr. Winters' statements regarding the numbers and percentages of students in private placements has remained constant. See Data Tables for OSEP State Reported Data: Part B Educational Environment (2009), DATA ACCOUNTABILITY CTR., http://www.idea data.org/arc_toc11.asp#partbLRE (last visited Feb. 15, 2013).
(237.) The importance of the private tuition remedy is evidenced by the fact that even in cases before the Supreme Court that address procedural issues under the IDEA, the underlying issue is most often placement of the child in a private therapeutic school and parents' rights reimbursement under the IDEA. See, e.g., Winkelman ex rel. Winkelman v. Parma City Sch. Dist., 550 U.S. 518, 533 (2007) (holding that "IDEA grants parents independent, enforceable rights. These rights, which are not limited to certain procedural and reimbursement-related matters, encompass the entitlement to a free appropriate public education for the parents' child."). Although this is an expansive reading of the statute and clearly indicates the importance of the entire bundle of procedural rights, the importance of reimbursement is inescapable. See also Schaffer v. Weast, 546 U.S. 49, 62 (2005).
(238.) Elisa Hyman et al., How IDEA Fails Families Without Means: Causes and Corrections from the Frontlines of Special Education Lawyering, 20 AM. U. J. GENDER SOC. POL'Y & L. 107, 122 (2011).
(239.) Id. See Lorraine Forte, Ensuring Equity for Children Who Have Special Needs, CATALYST IN DEPTH, Spring 2012, at 2, 2.
(240.) Hyman et al., supra note 238, at 112, 121,126 (discussing how the IDEA's private school tuition remedy constitutes an inherent structural bias that disproportionately benefits wealthy families).
(242.) 471 U.S. 359, 370 (1985).
(243.) Id. at 370 (emphasis added).
(244.) 20 U.S.C. [section] 1412(a)(10)(C)(ii) (2006).
(245.) 552 U.S 1 (2007).
(246.) The case resulted in a 4-4, two-sentence per curiam non-precedential decision affirming the Second Circuit's grant of reimbursement to parents. The original administrative matter involved payment of $21,819 for a student's private school tuition. The parent had recently resigned as the President and Chief Executive Officer of Viacom Inc., and was awarded an $85 million severance package. He told interviewers he insisted on appearing as an anonymous litigant to avoid publicity for both himself and his son but that he litigated the case for potential precedential value and to address an unfairness for other parents who could not afford the costs of private education for their child with special needs. See John Sullivan, New York City Loses Special Education Appeal, CITY ROOM, N.Y. TIMES (Oct. 10, 2007, 12:48 PM), http://cityroom.blogs.nytimes.com/2007/10/10/newyork-city-loses-special-education-appeal/.
(247.) Forest Grove Sch. Dist. v. T.A., 557 U.S. 230, 233 (2009).
(248.) Id. at 243.
(249.) Hyman et al., supra note 238, at 123-25.
(250.) Id. at 124.
(251.) Id. at 126.
(253.) Winkelman ex rel. Winkelman v. Parma City Sch. Dist., 550 U.S. 516, 533 (2007) (quoting Individuals with Disabilities Education Act, 20 U.S.C. [section] 1400(d)(1)(B) (2006)).
(254.) Id. at 533.
(255.) See Katie Harrison, Direct Tuition Payments Under the Individuals with Disabilities Education Act: Equal Remedies for Equal Harm, 25 J. CIV. RTS. & ECON. DEV. 873, 895-902 (2011) (analyzing the constitutional implications of precluding low-income parents from the unilateral placement remedy).
(256.) Sch. Comm. of Burlington v. Dep't of Educ., 471 U.S. 359, 373-74 (1985).
(257.) See Harrison, supra note 255, at 902-07.
(258.) WILLIAM J. MATHIS & LORNA JIMERSON, A GUIDE TO CONTRACTING OUT SCHOOL SUPPORT SERVICES: GOOD FOR THE SCHOOL? GOOD FOR THE COMMUNITY? 7-8 (2008).
(259.) Stephanie Simon, Privatizing Public Schools: Big Firms Eyeing Profits From U.S. K-12 Market, HUFFINGTON POST (Aug. 2, 2012, 10:16 AM), http://www.huffingtonpost.com/2012/08/02/private-firms-eyeingprof_n_1732856.html.
(260.) MATHIS & JIMERSON, supra note 258, at 8; see also Association Policies & Procedures, NAT'L ASS'N OF PRIVATE SPECIAL EDUC. CENTERS, http://www.napsec.org/strategicplan.html#WhatIs (last visited Feb. 21, 2013).
(261.) Ron Sehachter, Seeking Savings in Special Ed: Accelerating Costs Are Driving Some Districts to Outsource These Services, DIST. ADMIN., Jan. 1, 2012, at 35.
(262.) See e.g., David M. Halbfinger, Companies Shortchanged Preschool Special Education, State Audits Find, N.Y. TIMES, June 25, 2012, at A14; David M. Halbfinger, Preschool Special Education Trade Group Calls for More Audits and Penalities, N.Y. TIMES, Aug. 23, 2012, at A20.
(263.) Cf. Martha Minow, Confronting the Seduction of Choice: Law, Education, and American Pluralism, 120 YALE L.J. 814, 847 (2011) ("Our laws have made school choice a force, thus influencing the worlds of families, nations, cultures, religions, genders, sexualities, disabilities, and even the narratives we tell about what we want for the next generation.").
(264.) Martha Minow, Reforming School Reform, 68 FORDHAM L. REV. 257, 258 (1999).
(265.) Hensel, supra note 151, at 292. See also Curt Dudley-Marling & Diana Baker, The Effects of Market-Based School Reforms on Students with Disabilities, DISABILITY STUDIES Q., Vol. 32, No. 2 (2012).
(266.) 536 U.S. 639, 662-63 (2002) (holding that the Cleveland Pilot Project Scholarship program did not violate the Establishment Clause because it is "entirely neutral with respect to religion" and "provides benefits H to a wide spectrum of individuals, defined only by financial need and residence in a particular school district" and therefore is a "program of true private choice").
(267.) 131 S. Ct. 1436, 1440 (2011) (holding that a group of Arizona taxpayers did not have standing to challenge a state law that provides tax credits to people who donate to school tuition organizations that in turn provide scholarships to students who want to attend private or religious schools because any damages or harm claimed by the taxpayers by virtue of simply being a taxpayer would be pure speculation because the issue at hand was a tax credit and not a government expenditure).
(268.) See School Choice Programs in America: The Facts, ALLIANCE FOR SCHOOL CHOICE, http://www.allianceforschoolchoice.org/school-choiceprograms-in-america-the-facts (last visited Mar. 6, 2013).
(270.) Nirvi Shah, 30,000 Students with Disabilities Use Private School Vouchers, EDUCATION WEEK (Apr. 5, 2012, 9:08 AM), http:/ /blogs.edweek.org/edweek/speced/2012/04/3000_students_with_disabiliti.html.
(271.) Sarah Cart, School Vouchers Make a Comeback, Stir Concerns About Quality, THE HECHINGER REPORT (Aug. 21, 2012, 11:07 AM), http://hechingerreport.org/content/school-vouchers-make-a-comeback-stirconcerns-about-quality9285/.
(272.) See generally Milton Friedman, The Role of Government in Education, in ECONOMICS AND THE PUBLIC INTEREST 123, 143-44 (Robert A. Solo ed., 1955) (arguing the most effective means of reforming American education is to expose schools to the competitive forces of the free market and limiting the state's role in education to ensure that schools meet minimum standards).
(273.) See generally JOHN E. CHUBB & TERRY M. MOE, POLITICS, MARKETS, AMERICA'S SCHOOLS 10-11 (1990) (arguing that opening up educational markets to competition was a necessary and sufficient condition for reforming American schools and that the notion of choice is a panacea).
(274.) William N. Myhill, No FAPE for Children with Disabilities in the Milwaukee Parental Choice Program: Time to Redefine a Free Appropriate Public Education, 89 IOWA L. REV. 1051, 1062 (2004).
(275.) Hensel, supra note 151, at 292, 294.
(276.) Jay P. Greene & Stuart Buck, The Case for Special Education Vouchers, EDUCATION NEXT, Winter 2010, at 36, 41. It is important to note that this argument fails to consider the multifactorial social, public policy and scientific reasons that have likely contributed to the increase in students identified with disabilities.
(277.) Id. at 41.
(279.) Id. But see Hensel, supra note 151, at 331 (discussing the limited value of the threat of transferring a child back to public school).
(280.) Hensel, supra note 151, at 321.
(281.) Richard D. Komer, OCR Staff Memorandum, 22 INDIVIDUALS WITH DISABILITIES EDUC. L. REP. 669, 669 (1990); Letter from Susan Bowers, Acting Deputy Assistant Secretary for Civil Rights, & Patricia J. Guard, Acting Director, U.S. Dep't of Ed., to John W. Bowen, School Board Attorney, Pinellas County School Board (Mar. 30, 2001), available at http: //www2.ed.gov/policy/speced/guid/idea/ letters/2001-1/bowen3302001fape.pdf (stating that students placed through Florida's Opportunity Scholarship Program are considered "private school children with disabilities" with no individual entitlement to FAPE or related services under the IDEA).
(282.) Komer, supra note 281, at 670, 672.
(283.) See Hensel, supra note 151, at 321-330.
(284.) See NAT'L COUNCIL ON DISABILITY LIVING, SCHOOL VOUCHERS AND STUDENTS WITH DISABILITIES (2003).
(285.) Caruso, supra note 84, at 523.
(286.) See NAT'L COUNCIL ON DISABILITY LIVING, supra note 284 ("The principle of school choice, and voucher programs in particular, have not been adequately shown to be internally consistent and mutually reinforcing with regard to the other three principles of IDEA reauthorization (accountability for results, increasing local flexibility, and a focus on what works) outlined by the U.S. Department of Education....").
(287.) Hensel, supra note 151, at 337.
(288.) Cf. id. at 323, 336 (discussing the needs of children with mild learning disabilities, comparing the demands created by students with mild, moderate, and severe impairments and the potential impact of diminished public resources to educate children with severe disabilities).
(289.) The IDEA requires school districts to apportion IDEA Part-B dollars to provide for special education and related services to private school students with disabilities with the amount proportionate to the number of children with disabilities enrolled in private schools in the districts. 20 U.S.C [section] 1412(a)(3)(A) (2006); 34 C.F.R. [section] 300.131(a) (2012). This is not an individual entitlement for services but the delineation of the local educational authority to identify, locate and evaluate students with disabilities and to engage in meaningful consultation. "There is no individual entitlement to services at all.... There are no hearing rights to challenge decisions to give or withhold services." Mark C. Weber, Services for Private School Students Under the Individuals with Disabilities Education Improvement Act: Issues for Statutory Entitlement, Religious Liberty, and Procedural Regularity, 36 J.L. & EDUC. 163, 205 (2007).
(290.) Compare Hensel, supra note 151, at 328-30 (discussing lack of objective outcome measures to assess voucher programs and criticizing the research by the Manhattan Institute on the Florida McKay scholarship program as hopeful but not sufficient to make up for the lack of public data on the superiority of a private education for students with disabilities), with JAY P. CREENE & MARCUS WINTERS, MANHATTAN INSTITUTE FOR POLICY RESEARCH, THE EFFECT OF SPECIAL EDUCATION VOUCHERS ON PUBLIC SCHOOL ACHIEVEMENT: EVIDENCE FROM FLORIDA'S MCKAY SCHOLARSHIP PROGRAM (2008). See also Dudey-Marling & Baker, supra note 265 (" [S]ince the private schools accepting the vouchers are exempt from state and federal accountability requirements, data on the academic achievement of special education students who attend voucher schools in Florida are unavailable; therefore, the quality of education for students with disabilities who use vouchers to attend private schools in the state is largely unknown." (citation omitted)).
(291.) Hensel, supra note 151, at 296.
(292.) Hensel, supra note 151, at 349.
(293.) At the time this Article was being prepared for publication, school reform and the expansion of charter schools were a frequent topic of debate in the presidential election and an issue in the strike by the Chicago Teachers Union against the Chicago Public Schools. See, e.g., Monica Davey, Teachers' Strike in Chicago Tests Mayor and Union, N.Y. TIMES, Sept. 11, 2012, at A1.
(294.) Robert A. Garda, Jr., Culture Clash: Special Education in Charter Schools, 90 N.C.L. REV. 655, 657 (2012).
(295.) Id. at 658. See also KATHLEEN B. BOUNDY, COUNCIL OF PARENT ATTORNEYS AND ADVOCATES, CHARTER SCHOOLS AND STUDENTS WITH DISABILITIES: PRELIMINARY ANALYSIS OF THE LEGAL ISSUES AND AREAS OF CONCERN 6-7 (2012).
(296.) Robert A. Garda, Jr., The Politics of Education Reform: Lessons from New Orleans, 40 J.L. & EDUC. 57 (2011).
(297.) See generally BOUNDY, supra note 295, at 8-12 (describing the various structures of charters and the legal relationships between charters and local and state education authorities).
(298.) A discussion of the complexities of the law surrounding charter school organization, management, and relationship with local and state educational authorities is beyond the scope of this Article, which seeks to discuss the philosophical implications of charter schools on choices available for families of children with disabilities for this information. See generally Kathleen Conn, For-Profit School Management Corporations: Serving the Wrong Master, 31 J.L. & EDUC. 129, 137-142 (2002) (providing an overview of for-profit and nonprofit organizations of charter schools); Alexandria Barkmeier, Special Education Compliance and Charter Schools: A Study of National, State, and Local Policy in Denver Public Schools, 19 GEO. J. ON POVERTY L. & POL'Y 283, 285-87 (2012).
(299.) Robert A. Carda, Jr., Disabled Students' Rights of Access to Charter Schools Under the IDEA, Section 504 and the ADA 2 (June 1, 2012) (unpublished manuscript) available at http://papers.ssrn.com/so13/papers.cfm?abstractid=2072498.
(300.) The Public Charter School Dashboard, NAT'L ALLIANCE FOR PUB. CHARTER SCHS., http://dashboard.publiccharters.org/dashboard/students/page/over view/year/2012 (last visited Feb. 15, 2013).
(301.) U.S. GOVERNMENT ACCOUNTABILITY OFFICE, CHARTER SCHOOLS: ADDITIONAL FEDERAL ATTENTION NEEDED TO HELP PROTECT ACCESS FOR STUDENTS WITH DISABILITIES 7 (2012) [hereinafter GAO REPORT].
(302.) See RON ZIMMER ET AL., CHARTER SCHOOLS IN EIGHT STATES: EFFECTS ON ACHIEVEMENT, ATTAINMENT, INTEGRATION, AND COMPETITION 87 (2009) (stating that across locations there is little evidence that charter schools are producing, on average, achievement impacts that differ substantially from those of traditional public schools); ANNA NICOTERA, NAT'L ALLIANCE FOR PUB. CHARTER SCHS., MEASURING CHARTER PERFORMANCE 2-6 (6th ed. 2010) (concluding that charter school student achievement demonstrate mixed results).
(303.) BOUNDY, supra note 295, at 4-5.
(304.) See Derek W. Black, Education's Elusive Future, Storied Past, and the Fundamental Inequities Between, 46 GA. L. REV. 557, 590-593 (2012).
(305.) Cf. id. at 589.
(306.) See id. at 582.
(307.) GAO REPORT, supra note 301, at 6.
(308.) Id at 8. The numbers of disability focused charter schools is very small, making up only 2 percent of all charter schools nationwide. BOUNDY, supra note 295, at 35.
(309.) Garda, supra note 294, at 659.
(310.) BOUNDY, supra note 295, at 27.
(311.) Id. at 29.
(313.) GAO REPORT, supra note 301, at 14, 17.
(314.) Id. at 15. See also Barkmeier, supra note 298, at 284-85.
(315.) Forte, supra note 239, at 2.
(316.) GAO REPORT, supra note 301, at 19-20.
(317.) BOUNDY, supra note 295, at 28.
(318.) See id.
(319.) P.B. v. Pastorek, No. 2:10-cv-04049, (E.D. La. Apr. 26, 2011).
(320.) See Complaint, P.B. v. Pastorek, No. 2:10-cv-04049 (E.D. La. Oct. 26, 2010), available at http://www.lawyerscommittee.org/admin/ education/documents/files/FILED-COMPLAINT-P-B-v-Pastorek.pdf.
(321.) Barkmeier, supra note 298, at 284.
(322.) See id. at 304.
(323.) See generally Mark C. Weber, Special Education from the (Damp) Ground Up: Children with Disabilities in a Charter School-Dependent Educational System, 11 LOY. J. PUB. INT. L. 217, 241-45 (2010).
(324.) Cf. id. at 244-45.
(325.) These proposals include one that Professor Mark Weber advocated for in considering the limitations on access and the provision of services that are already apparent in the reconstituted post-Katrina New Orleans school system. Professor Weber suggests that six principles should guide reforms in reconstructing a program of special education in the reconstructed city. Id. at 221-22 (concluding that "outcomes will not be improved, children with disabilities will not be treated as equals, and rights will be violated unless the school system takes seriously the job of guaranteeing high
quality supportive services for children who need special education."). Professor Robert Garda advocates that there should be amendments to IDEA that compel charter schools to link with other charter schools, existing local educational authorities, or larger service organizations for the provision of special education, the utilization of uniform enrollment procedures, requiring detailed special education plans in charter applications, and implementing specific accountability measures that must be met for authorization and reauthorization of charters. See generally Garda, supra note 294.
(326.) Weber, supra note 323, at 220.
(327.) Abby Lippman, The Genetic Construction of Prenatal Testing: Choice, Consent, or Conformity?, in WOMEN & PRENATAL TESTING: FACING THE CHALLENGES OF GENETIC TECHNOLOGY 9, 30 (Karen H. Rothenberg & Elizabeth J. Thomson eds., 1994) ("Women's desire for children without disability warrants complete public and private support.").
Deborah Pergament ([dagger])
Managing Attorney, Children's Law Group, LLC. Clinical Instructor, DePaul University College of Law. A.B., 1991, Mount Holyoke College; M.A., M.L.S., 1993, Indiana University; J.D., 1998, Case Western Reserve University School of Law. My thanks to Ruth Farrell and Jessica Berg for inviting me to participate in the "New Technologies, New Challenges: Women and Prenatal Testing in the 21st Century" symposium. I am grateful to Nanette R. Elster, Jennifer Simokaitis and Dr. Eugene Pergament for comments on earlier drafts. This Article does not reflect the opinions or policies of DePaul University College of Law or any clients of Children's Law Group, LLC. All errors and opinions are mine.
|Printer friendly Cite/link Email Feedback|
|Title Annotation:||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|
|Date:||Mar 22, 2013|
|Previous Article:||What does choice really mean? Prenatal testing, disability, and special education without illusions.|
|Next Article:||Taxation without representation: the illegal IRS rule to expand tax credits under the PPACA.|