MAY 9, 1995

National Council on Disability
1331 F Street NW
Suite 1050
Washington, DC 20004-1107

(202) 272-2004 Voice
(202) 272-2074 TT
(202) 272-2022 Fax

This document is available in braille, large print, and on diskette.

The views contained in the report do not necessarily represent those of the Administration, as this document has not been subjected to the A-19 Executive Branch review process.

LETTER OF TRANSMITTAL

May 9, 1995
The President
The White House
Washington, D.C. 20500

Dear Mr. President:

The National Council on Disability is pleased to submit to you this report entitled, Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools Work for All of America's Children. This report presents the results of an extensive research process regarding progress in the implementation of the Individuals with Disabilities Education Act (IDEA) over the past 20 years and recommendations for improving the implementation of IDEA as Congress begins to consider its reauthorization. Nearly 400 witnesses (the vast majority of whom were parents of children with disabilities, students with disabilities themselves, and adults with disabilities) contributed their views regarding the reauthorization of IDEA at 10 regional hearings, sharing their experiences with IDEA to date and their hopes for its future. We believe that their voices should be central to any discussion of special education policy and that the adoption of the recommendations detailed in this report would result in a markedly improved special education service delivery system.

As you know, the right of students with disabilities to receive a free and appropriate education in the least restrictive environment is solidly rooted in the guarantee of equal protection under the law granted to all citizens under the Constitution. Over the past 20 years, the Federal government has recognized and supported this right through providing billions of dollars in special education funding in order to assist the States in meeting their responsibilities in this area. Our main finding is that this investment has had a positive impact on the quality of life experienced by students with disabilities and their families, and that the majority of problems which have occurred in special education have not been the result of problems with the law itself, but with its implementation.

Therefore, the National Council on Disability recommends that the Federal government develop a more efficient and effective approach to monitoring the implementation of IDEA, identifying exemplary practices where they exist, citing non-compliance where it exists, delivering technical assistance aimed at improving compliance, and providing effective sanctions for non-compliance. Through improved implementation of IDEA, education for all students can become "special," and all students will be supported in attaining their maximum potential in order to create a future for America that is characterized by acceptance of diversity, global competitiveness, and the full exercise of citizenship.

It remains an honor to serve you and America in this vital work.

Sincerely,

Marca Bristo
Chairperson

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the U.S. House of Representatives.)

NATIONAL COUNCIL ON DISABILITY MEMBERS AND STAFF

Members

Marca Bristo, Chairperson
John A. Gannon, Vice Chairperson
Yerker Andersson
Ellis B. Bodron
Larry Brown, Jr.
Ela Yazzie-King
Audrey McCrimon
Bonnie O'Day
Lilliam R. Pollo
Mary M. Raether
Debra Robinson
Shirley W. Ryan
Michael B. Unhjem
Rae E. Unzicker
Kate P. Wolters

Staff

Speed Davis, Acting Executive Director
Billie Jean Hill, Program Specialist
Jamal Mazrui, Program Specialist
Mark S. Quigley, Public Affairs Specialist
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant
Janice Mack, Administrative Officer

Edward P. Burke, Senior Advisor and Editor

Acknowledgments

The National Council on Disability wishes to express its gratitude to the members of its Subcommittee on Education for their hard work and valuable suggestions; to Edward P. Burke for organizing and attending the hearings and editing this very substantial report; to Mark S. Quigley for technical production; to Rud and Ann Turnbull and the staff of the Beach Center on Families and Disability at the University of Kansas (Lawrence, KS); to Martha Ziegler, Barbara Popper, and Nora Wells of the Federation for Children with Special Needs (Boston, MA); to Lourdes Putz of United We Stand (Brooklyn, NY); to Barbara Buswell and Jerri Miller of the PEAK Parent Center (Colorado Springs, CO); to Diane Lipton and Sarah Everett of the Disability Rights Education and Defense Fund (Berkeley, CA); to Anne Marie Hughey of the National Council on Independent Living (Arlington, VA); to Duane French of Access Alaska (Anchorage, AK); to Bob Michaels and Lisa Janoff of Resources for Living Independently (Philadelphia, PA); to Lee Schulz of the Southeast Wisconsin Center for Independent Living (Milwaukee, WI); to Alan Abeson of The Arc (Arlington, TX); to John Foley and Sara Sharer of The Arc of New Mexico (Albuquerque, NM); to Kit Olsen of The Arc of Iowa (Des Moines, IA); and to Dave Richard, Judy Burke, and Karen McElroy of The Arc of North Carolina (Raleigh, NC).

Most of all, the National Council wishes to thank the hundreds of parents, students with disabilities, adults with disabilities, and interested professionals who took time from their busy lives to attend the hearings and to present testimony on their experiences and their recommendations for the improvement of the Individuals with Disabilities Education Act.

Members of the Subcommittee on Education as of November 1994

Mary M. Raether, Chairperson
Anthony H. Flack
John A. Gannon
Robert S. Muller
Shirley W. Ryan

TABLE OF CONTENTS

Introduction

Reviewing IDEA's Purposes
Congressional Purposes
The 1995 Reauthorization
Twenty Years Later: Has IDEA Met the Test of Time?

The Individuals with Disabilities Education Act: Twenty Years of Progress in Serving the Nation's Students with Disabilities

Zero Reject

Statement of Law
Access
Parents' Lack of Information
Difficult-To-Serve Students
Discipline
Recommendations: Zero Reject

Assessment for Eligibility and Nondiscriminatory Evaluation

Statement of Law
Problems with Labeling Children
Native Language and Mode of Communication
Overrepresentation of Minorities in Special Education
Parent Participation in Evaluations
Lack of Clarity in Assessment Criteria
Independent Evaluations
Timeliness of Evaluations
Minimum Competency Testing
Creation of New Disability Categories
Neurobiological Disorders
Emotional Disability and Mental Illness
Summary of Assessment for Eligibility and Nondiscriminatory Evaluation Issues
Recommendations: Assessment for Eligibility and Nondiscriminatory Evaluation

Appropriate Education

Statement of Law
Appropriate Education Generally
Individualized Education Programs (IEPs)
Parent and Student Involvement and the IEP Meeting
The IEP Itself
The IEP and Teachers
IEP Implementation and Enforcement
Related Services
The Overall Benefits of Special Education
Alternative Placement
Recommendations: Appropriate Education

Least Restrictive Environment

Statement of Law
Benefits of Integration
Characteristics of Successful Integration
Barriers to Integration
Attitudes of Professionals in Education
Personnel Preparation
Funding and Costs
Partial Integration
Being Treated as a "Burden" to Regular Education
Continuum of Services
Recommendations: Least Restrictive Environment

Parent Participation and Shared Decision Making 101

Statement of Law
General Issues Concerning Collaboration
Training and Information Issues
Zero Reject
Assessment for Eligibility and Nondiscriminatory Evaluation
Appropriate Education
Individualized Family Service Plans and Individualized Education Programs
Parents Are Not Professionals
Program Methods
Least Restrictive Environment
Procedural Due Process
Recommendations: Parent Participation and Shared Decision Making

Procedural Due Process

Statement of Law
Enforcement in General
Due Process in General
Mediation
Attorneys Fees and Attorneys
Recommendations: Procedural Due Process

Transition

Statement of Law
Transition Across a Person's Entire Life
The Mandatory Age for the Initiation of Transition Planning Needs to Be Lowered
High School Programs Can Better Prepare Students for Success Following Graduation
Grade-to-Grade Transitions Are Also Important to Students' Success
Changes Need to Be Made in the Process of Transition Planning
Annual IEPs Need to Reflect the ITP and the Overall Vision for the Student
The Social Aspects of Transition Need to Be Emphasized
Collaboration is Vital to a Successful Transition Process
Recommendations: Transition

Discretionary Programs

Statement of Law
Overall Impact on Programs
Personnel Development
Parent-As-Collaborator
Recommendations: Discretionary Programs

Funding

Statement of Law
The Need for Adequate Funding
General Funding Advice from Witnesses
Reducing Financial Barriers to Placements in Less Restrictive Settings
Recommendations: Funding

Special Education and the Goals 2000: Educate America Act

Statement of Law
Testimony Concerning Goals 2000
Recommendations: Special Education and the Goals 2000: Educate America Act

Summary and Recommendations

Appendices

Appendix A: Hearing Dates and Locations

Appendix B: List of Witnesses

Appendix C: Table of Acronyms

Appendix D: Synthesis of Reports from Nationally Preeminent Special Education Researchers and Teacher Trainers

Appendix E: Acknowledgements

Appendix F: A Brief Description of the National Council on Disability

With the passage of the Education for All Handicapped Children Act in 1975, the nation took a giant step forward in ensuring that students with disabilities and their families would be afforded equal protection under the law. As a result of numerous exposés, court cases, and the advocacy of parent groups, the Congress responded to the historic exclusion of children with disabilities with a guarantee that children with disabilities would be afforded equal educational opportunities and the supports and services necessary to access such opportunities. Congress not only granted a right to education for all students with disabilities, it also established the mechanisms through which students and families could exercise that right. Among its many provisions, the Education for All Handicapped Children Act required parent participation at virtually all levels, fair assessment practices, the development of an individualized education program for every eligible student, the provision of related services, placement of students in the least restrictive environment, and the establishment of due process procedures through which parents and students could appeal the decisions of professionals.

A summary of the provisions of the Act and major court findings regarding its interpretation follows.

Reviewing IDEA's Purposes

Congressional Purposes

In 1975, when Congress enacted the Education for All Handicapped Children Act, P.L. 94-142--now titled Part B of Individuals with Disabilities Education Act IDEA)--it found that the special education needs of more than eight million students with disabilities were not being met. Some students were entirely excluded from school; others were not receiving an appropriate education; still others had unidentified disabilities or were misclassified. Of those who did receive educational services, many were educated far away from their local schools (20 U.S.C. Sec. 1400(b)(1)-(6)). Still, Congress recognized that educators had the ability to instruct these students (20 U.S.C. Sec. 1400(b)(7)).

Congress then found that State and local educational agencies had a duty to educate all students with disabilities, that they lacked the financial resources to do so, and that it was in the national interest for the Federal government to assist in meeting the educational needs of students with disabilities in order to assure equal protection under the law (20 U.S.C. Sec. 1400(b)(8) and (9)). Accordingly, Congress declared that the Act's purpose was to assure that all children with disabilities receive a free appropriate public education; to ensure that their rights and those of their parents and guardians were protected; to assist State and local agencies in providing for their education; and to assess and assure the effectiveness of those agencies' efforts to educate students with disabilities (20 U.S.C. Sec. 1400(c)).

The 1995 Reauthorization

Every time that Congress has reauthorized or amended IDEA during the last 20 years, it has strengthened and extended IDEA's substantive and procedural provisions. In doing so, it has reaffirmed the original statement of purpose. In 1995, the 104th Congress has every reason to follow this unbroken precedent for the following reasons:

• There is more than a 20-year history of Federal presence in special education. P.L. 94-142 was not the first (although it was the most comprehensive) Federal special education law. Its predecessor was the Elementary and Secondary Education Act of 1965 (P.L. 89-750) as amended by the Education of the Handicapped Act (P.L. 91-230 and P.L. 93-380).
  
  
• Congress has long been committed to enabling people with disabilities to work and participate in economic benefits of our country. Through initial passage of and ongoing and strong support for legislation such as the Rehabilitation Act Amendments of 1973, IDEA itself, the Americans with Disabilities Act, and the Developmental Disabilities Assistance and Bill of Rights Act, Congress has expressed its strong and unwavering support for ensuring that people with disabilities are afforded equal protection rights granted under the Constitution (including equal educational opportunities), and are protected from discrimination, as well as for ensuring that State and local governments receive assistance in providing effective services to people with disabilities.
  
  
• Finally, every branch of the Federal government has acknowledged that IDEA is fully justified. This is true of the Legislative Branch and the Executive Branch, and especially true of the Federal courts, the Judicial Branch. Indeed, the United States Supreme Court itself has uniformly and often unanimously upheld IDEA's basic principles:
  
  
• By passing (IDEA), Congress sought primarily to make public education available to handicapped children...to open the door of public education to handicapped children...to incorporate and build on the principles established in two 1972 decisions, PARC v. Commonwealth and Mills v. D. C. Board of Education (the principles which they established are the principles which, to a significant extent, guided the drafters of the Act)...to provide federal assistance to enable the states to meet the needs of the children (citing H.Rep. No. 94-332), and thereby to create...access to specialized instruction and related services which are individually designed to provide educational benefit to the handicapped child. Board of Education v. Rowley, 458 U.S. 176 (1982).
  
  
• A service [such as clean intermittent catheterization (CIC)] that enables a handicapped child to remain at school during the day is an important means of providing the child with the meaningful access to education that Congress envisioned....Services like CIC that permit a child to remain at school during the day are no less related to the effort to educate than are services that enable the child to reach, enter, or exit the school. Irving Independent School District v. Tatro, 468 U.S. 883 (1984).
  
  

The Court has made it clear that IDEA is not one of the so-called "unfunded Federal mandates," but is a Federal grant program that is entirely justified under Congress' power and duty to implement the equal protection guarantees of the U.S. Constitution. More than that, the Court has acknowledged in the most unequivocal terms that IDEA provides Federal aid to the States to help them carry out their own legal obligations to educate all children, including those with disabilities.

The [IDEA] is a comprehensive scheme set up by Congress to aid the States in complying with their constitutional obligations to provide public education for handicapped children. Both the provisions of the statute and its legislative history indicate that Congress intended handicapped children with constitutional claims to a free appropriate public education to pursue those claims through the carefully tailored administrative and judicial mechanism set out in the statute....The [IDEA] was an attempt to relieve the fiscal burden placed on States and localities by their responsibility to provide education for all handicapped children [citations omitted] At the same time, however, Congress made clear that the [IDEA] is not simply a funding statute. The responsibility for providing the required education remains on the States [citations omitted] And the Act establishes an enforceable substantive right to a free appropriate public education. Smith v. Robinson, 468 U.S. 992, 1009, 1010 (1984).

These cases build, as does IDEA, on the cutting edge honed by two 1972 decisions.

• By a consent decree, PARC v. Commonwealth, 334 F. Supp. 1257, 343 F. Supp. 279 (E.D.Pa. 1971, 1972), which ordered the State to provide all school-aged children with mental retardation in Pennsylvania a free appropriate public education in the least restrictive placement. The court found that the denial of that right constitutes a denial of their equal protection guarantees: Having undertaken to provide a free public education to all of its children, including its mentally retarded children, the Commonwealth of Pennsylvania may not deny any mentally retarded child access to a free program of education and training.
  
  
• By a decision and judgment, Mills v. D. C. Board of Education, 348 F. Supp. 866 (D.D.C. 1972), which held that the District of Columbia Board of Education has an obligation under the due process clause of the Fifth Amendment to provide a free and suitable publicly supported education to every school-aged child, regardless of the student's degree of mental, physical, or emotional disability.
  
  

Twenty Years Later: Has IDEA Met the Test of Time?

In the 20 years that have passed since the enactment of the Education for All Handicapped Children Act, significant changes have occurred in our society and in our schools. Numerous calls for educational reform have been made and ambitious plans for improving the performance of the nation's schools have been launched, most notably the Goals 2000: Educate America Act. Within this climate of educational change, it is imperative that special education become more closely aligned with regular education. Indeed, it is of the utmost importance that special education not exist as a separate entity, but that it assume the role of a supportive service within the context of regular education. Both systems have a lot to learn from each other, and if special education is to prosper under efforts at educational reform, it must be better woven into the fabric of modern education.

In addition to changes in the field of education, many changes have occurred during the last 20 years in our nation's policies regarding people with disabilities. In this relatively short period, the foundation of disability policy has shifted from a base largely built on paternalism to one built on civil rights. Today, the stated goals of the nation's disability policy--as defined in the landmark Americans with Disabilities Act of 1990--are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency.

Given these changes in society, in schools, and in disability policy, it is important to understand whether legislation developed during the 1970s is meeting the needs of students, families, and professionals who are living in the 1990s. While the original Education for All Handicapped Children Act has been changed through various reauthorizations, its fundamental goals and features have remained intact. Today, the Act's successor, the Individuals with Disabilities Education Act (IDEA), contains important additions that have been made over the years in areas such as research on promising practices, extension of coverage to infants and toddlers, provisions for better transition to adult life, etc. However, IDEA largely retains the original goals and features of the Education for All Handicapped Children Act. As IDEA is currently scheduled for reauthorization, the National Council on Disability (NCD) determined that it should conduct a field-based study of the status of IDEA and develop recommendations regarding its reauthorization.

The National Council on Disability has a special interest and responsibility in ensuring that the Individuals with Disabilities Education Act responds as fully as possible to the needs of children and youth with disabilities. This interest and responsibility are based on its historical affiliation with the Department of Education, our continuing statutory responsibilities involving the Department, and its statutory mandate to provide Congress and the Administration with advice and recommendations on all aspects of disability policy.⁽¹⁾

Accordingly, the National Council on Disability determined that the best method for gathering information on the status and impact of IDEA would be to conduct of field hearings across the country, hearings designed to gather information from those who were in the best position to comment on the law's effectiveness: parents and students. Through 10 field hearings held during October and November 1994 in Alaska, New Mexico, Iowa, New York, Pennsylvania, North Carolina, Wisconsin, Colorado, Massachusetts, and California, the NCD was able to develop a rich data base from which to determine the current level of the law's effectiveness and to make recommendations for its improvement. These hearings were held in each region of the U.S. Department of Education in order to develop a profile of special education practices by focusing on the experiences of parents, family members, students, adults with disabilities, and other interested people with a family-based perspective. (Please refer to Appendix A for a list of hearing dates and locations). The hearings were designed to encourage cross-disability participation and testimony from minority citizens. In recognition of the evolving role of government in the lives of citizens across the United States ⁽²⁾, NCD's focus was primarily on the "customers" of special education: parents, family members, and students themselves. This focus on the views of parents and students is based on the belief that the ultimate test of the effectiveness of government programs is whether those programs have a positive, real, and lasting influence on the lives of those they are designed to help. The goals for the hearings were to identify areas of strength in the current implementation of IDEA and to gather recommendations for better implementation from the viewpoint of customers.

At these hearings the NCD heard from nearly 400 witnesses, most of whom were parents or other family members of students with disabilities. Past and present students and a relatively small number of professionals also testified ⁽³⁾. In all, the hearings produced over 3,000 pages of transcripts, written testimony, and letters regarding the substance of the hearings. Consistent with its goal of presenting the views of the customers of special education, NCD has included direct quotes from approximately half of the witnesses who testified at the hearings in the present report.

The NCD was assisted in conducting these hearings by Centers for Independent Living (responsible for organizing hearings in Alaska, Pennsylvania, and Wisconsin), State chapters of The Arc (responsible for organizing hearings in New Mexico, Iowa, and North Carolina), and Technical Assistance to Parent Programs (responsible for organizing hearings in New York, Colorado, Massachusetts, and California). The Beach Center on Families and Disability (University of Kansas) also assisted the NCD with logistics concerning the hearings. In addition, Beach Center staff read and indexed (by witness and topic) all of the testimony and prepared a summary and analysis for the NCD that form the basis for this report.

The overall finding associated with this research process is that the basic principles and features associated with the Individuals with Disabilities Education Act are as valid today as they were 20 years ago. Thus, very little language in the Act needs amendment. However, given extensive and at times very serious and negative reports from parents and students regarding the impact of IDEA on their lives, vast improvement in the implementation of the Act is needed. Dramatic improvements are needed in implementing policies and programs across all major parts of IDEA. Common themes heard throughout the hearings included the following:

• Far too many school buildings remain physically inaccessible to students with disabilities, thereby denying these students placement in regular educational settings. In addition, contrary to the provisions of the Act, some students continue to be excluded/ removed from school based on behaviors associated with their disabilities.
  
  
• The current system of identifying students as eligible for special education encourages the harmful labeling of children, fails to identify some needy students as eligible, overidentifies children from minority backgrounds as disabled, and often employs assessment criteria that are inappropriate for students or insensitive to their cultural and communication backgrounds.
  
  
• There is great variability in the quality of individualized education programs (IEPs) required under the Act. The overall purposes of IEPs must be clarified. IEPs need to be supported by better parent training, more parental flexibility regarding the contents of IEPs, and monitoring for improvements in the level of parental satisfaction with the process and its results.
  
  
• In spite of provisions requiring placement in the least restrictive environment, many parents reported that placement in a regular school building was simply not an option offered in many school districts. In fact, there are financial incentives to place students in separate facilities. Virtually all of the parents who had gained inclusive placements for their children reported that they had to fight for these placements, sometimes via legal proceedings. Nevertheless, these parents universally stated that these inclusive placements were far superior to segregated placements.
  
  
• The field of special education needs to undergo a paradigm shift, from its current status as a system apart from regular education to one which is an integral part of regular education, providing a wide array of supports and services within the context of regular education programs and facilities. Services and supports should come to students, not the other way around.
  
  
• In spite of provisions mandating parent participation in decision making, parents in many parts of the country still feel largely left out of the process. Many parents reported that they arrived at IEP planning meetings only to be presented with a completed plan.
  
  
• The Federal government should play a key role in monitoring the quality of special education and enforcing the provisions of the Act. However, there are serious problems with the type and frequency of current Federal monitoring activities. These problems essentially condone non-compliance with the Act and increase parental use of the due process provisions of the Act, placing serious financial hardships on families and creating adversarial relationships between school districts and families.
  
  
• Parents should have a voluntary option to use mediation and other forms of informal dispute resolution when disagreements with school districts occur.
  
  
• The mandatory age for transition planning should be lowered to 14 and students should be better prepared for their transition from school to adult life through more flexibility in secondary school programming.
  
  
• The family-centered focus of Part H of the Act relating to infant and toddler services has been both well received and beneficial. Consideration needs to be given to having this family-centered focus throughout the Act.
  
  
• Personnel preparation programs need to produce graduates who have the skills and experience to provide intensive developmental and remedial instruction to students with disabilities in regular education settings.
  
  
• Funding for parent training programs needs to be increased if parents are to become well-informed and effective partners in the educational process.
  
  
• Based on the implementation of the recommendations in this report for the restructuring of special education, overall Federal funding for special education should be increased.
  
  
• Special education should be an integral part of the implementation of Goals 2000. Its role should change from a place where a limited number of labeled students are sent to a support service for all learners in schools all across America.

In the chapters that follow, the text describes the testimony of witnesses regarding these themes and their recommendations for improving special education. It is necessary to emphasize, however, that in spite of the many problems reported by witnesses, strong support was present at every hearing for the continuation and improvement of IDEA. Even within the context of flawed implementation and limited funding, IDEA has made a remarkable difference in the lives of many it has served.

What is needed now is significantly improved implementation, leading to a better education for all children. It is our belief that the customer-driven recommendations contained in this report will lead to this end.

IDEA has made a difference for Maddie, a difference that translates into her attendance at our public elementary school a half a block from our home with other first and second graders in her neighborhood. Her regular presence in school means that kids of all ages greet her on the playground, acknowledge her in stores, and expect that she is a part of the community. As a result of these expectations, I'm proud to say that Maddie could not be here today -because she is in school! (Joe Wild Crea, Denver, CO) ⁽⁴⁾

Before IDEA the vast majority of children with disabilities had no future. IDEA has created a future with real opportunities. It must be reauthorized. As we've heard, it's a great success in human terms, but it's also a great success in cold, hard economic terms because educated children with disabilities are growing up and becoming productive adult taxpayers. (Stanley Klein, Boston, MA)

I love IDEA. It's a wonderful law. Keep it...Strengthen the ability to monitor and enforce the laws, take out of the way barriers that don't allow for the integration imperative to be realized, provide incentives to help teachers keep abreast of the state-of-the-art technologies (instructional, as well as assistive), that are allowing our young people to achieve so much. (Janet Vohs, Boston, MA)

Across the nation, parents, family members, and students with disabilities, as well as advocates and friends enthusiastically reported on the positive impact the Individuals with Disabilities Education Act (IDEA) had in their lives and encouraged Congress to "fine-tune" the statute in order to ensure more effective implementation by Federal, State, and local educational agencies. In all of the 10 regional hearings sponsored by the National Council on Disability there were ringing affirmations in support of IDEA and the positive difference it has had in the lives of children and youth with disabilities and their families.

I think there's a whole generation of parents out there who could give you story after story of what it was like before and after enactment of the IDEA. And the difference is dramatic in what we could expect for our children....The benefits of IDEA have been enormous, and throughout the country there are exemplary programs and dedicated professionals working hard every day to make the law work. (Diane Lipton, Berkeley, CA)

I try to appreciate all the opportunities that I have had to achieve, but when I leave school, I want a real job with a company that is willing to pay my salary and be patient with me...I would become a total product of what you all decided I am going to be, as you all have a say in all my dreams and goals. What gives you the right to place limits on me? Remember, that in this life, we all have had dreams. All of you, you need to give people like me an opportunity to fulfill our dreams, to be accepted by everyone in this community, and most important, to attend schools and live and work in a normal environment. (Nannie Marie Sanchez, Albuquerque, NM)

This is a critical law that has a powerful impact on our children, our family and our community. Don't change it. Fund it and enforce it. (Linda Breuer, Milwaukee, WI)

In hearings all across the country, witnesses told of the tremendous power of IDEA to help children fulfill their dreams to learn, to grow, and to mature. For many, the opportunity to be included in regular education classrooms with special education supports in place meant meaningful education that prepared them to enter the adult world as active contributors, rather than dependent (and largely unknown) "outsiders." Witnesses told of school districts where children with disabilities were made welcome, were accommodated, and were viewed as participating members of the school community. As one witness put it, the education system, and society at large, must

Recognize that disabled children are a part of the American Family. Without the law, without each and every protection, equal educational opportunity for disabled children will again be an empty dream. (Diane Lipton, Berkeley, CA)

These people had seen IDEA working as it should, with both the education community and families accepting responsibility for children with disabilities, providing them access and opportunities for growth and learning and helping them to enjoy the free and appropriate public education which the IDEA promises.

Many witnesses testified to the positive difference that IDEA has made. However, many others pointed out that IDEA has not achieved all that it might, even as the nation reaches IDEA's 20th anniversary:

The principal told me... my child was a miserable failure because he could not perform math without assistance. (Jan Miller, Berkeley, CA)

Sitting on top of their disabilities, like oil on water, is this large layer of, "I can't. Why even try?" (Judi Hirsch, Berkeley, CA)

The witnesses were overwhelmingly clear that there is a great deal more that Congress, the U.S. Department of Education, and State and local agencies can do to assure the equal protection of the law and to improve IDEA's implementation. There are still far too many shortcomings in special education practice, yet not a single one of the almost 400 witnesses advocated for anything but the fine tuning of IDEA itself. What they wanted, almost unanimously, was improvement in practices, not in the Act itself. One witness, summing up the sentiment of all who testified, made the following statement:

If IDEA should not be reauthorized, it would make our plight, as well as thousands of others, a catastrophe. (Carolyn Lavadie, Albuquerque, NM)

Another witness also expressed the sentiment of others, firmly stating her belief that the implementation of IDEA can be greatly improved:

I think we need leadership on all levels: nationally, the state level, and certainly within the school districts in the school system. That leadership, once in place, will move mountains. (Rafaelita Bachicha, Albuquerque, NM)

Throughout the hearings, witnesses provided testimony regarding virtually every aspect of the law. Their testimony was organized around 10 basic themes which encompass both the historic and the current implementation of IDEA:

• Zero Reject, the provision that requires that all students, regardless of the nature or severity of their disabilities, shall receive a free and appropriate public education;
  
  
• Assessment for Eligibility and Nondiscriminatory Evaluation, the provisions that requires State and local education agencies to assess students fairly for strengths and needs and then determine whether a student has a disability, the nature and extent of the disability, and the student's need for special education;
  
  
• Appropriate Education, the provision that requires education agencies to follow certain processes in educating students in special education (including the development of an individualized education program) and to assure that they benefit from their education;
  
  
• Least Restrictive Environment, the provision that requires education agencies to educate all students with disabilities with students who do not have disabilities to the maximum extent appropriate;
  
  
• Parent Participation, the provisions that enable education agencies, parents, and students to share decision-making responsibilities and to collaborate in special education;
  
  
• Procedural Due Process, the provisions that require education agencies to be accountable to parents and students;
  
  
• Transition, the provisions that require education agencies to follow certain procedures to ensure that students will have the skills and opportunities to achieve certain goals as a result of their experience in special education;
  
  
• Discretionary Programs, the provisions for those training, demonstration, research, and technical assistance programs that Congress has authorized to help Federal, State, and local agencies carry out their duties and to help parents and families be effective partners;
  
  
• Funding, the provisions that determine the Federal share of special education costs and how Federal funds are being allocated; and
  
  
• The Goals 2000: Educate America Act, the nation's education reform law (P.L. 103-227), with provisions that give particular attention to how families, students, and professionals in special education are involved in its implementation.

The witnesses' concerns paralleled those that NCD discovered as it analyzed the research literature on IDEA's effectiveness and how it might be improved at the Federal, State, and local levels. In fact, NCD, in collaboration with the Beach Center on Families and Disability, commissioned 27 research papers by preeminent scholars in special education research and personnel preparation: these papers were written concurrently with the hearings. The degree of similarity between what witnesses told NCD at the hearings and what these scholars cited as the most important areas for attention during the reauthorization process was remarkable. Appendix B contains a brief synthesis of these papers. Thus, there emerge from two sources--from consumers as well as researchers and teacher trainers--generally consistent and always powerful messages: IDEA has had a powerful positive impact. It redresses the denial of equal educational opportunity. It needs fine-tuning. Most of all, it needs effective implementation and reauthorization.

A great leader once said, "A single spark starts an enormous fire." Ladies and gentlemen, IDEA is the spark that started a fire within the souls of many who experience mental retardation and other disabilities and their families. We must allow the fire to fully ignite opportunity for all children with disabilities. It is imperative that IDEA be properly reauthorized so that these children and their families can realize the same choices and opportunity as all Americans. (Mike Remus, Des Moines, IA)

The law may be named "the Individuals with Disabilities Education Act", but for children like my daughter and others, it really means ideas, dreams, expectations, and aspirations. Because...through IDEA, we will see our dreams come to life for our children. (Sue Endress, Milwaukee, WI)

I came from Minnesota today because in my work I often say I marvel at how well this law was written. I marvel at a law that was written in 1975 that did not anticipate many of the needs of the children who are in the system now. I marvel at how well that system does serve children if there is a spirit of a partnership between professionals and parents. (Virginia Richardson, Des Moines, IA)

A partially implemented IDEA has transformed thousands of lives and hundreds of communities. The Arc of Nebraska and this parent would like to see it taken to the next level. There are hundreds with dreams like John who are counting on you and me to get IDEA reauthorized. They need us, and we need them to experience full communities where everyone participates and contributes...We learn to see similarities rather than differences and to live in the real world with diversity. Many people will tell you that they have become more informed, more sensitive, more productive, and more loving in their relationships with persons with disabilities. In a world torn with greed, apathy, prejudice, and waste, the inclusion of persons with developmental disabilities offers communities a better way. They are here to participate and teach us as well as to learn with us. (Gwen McCollum, Des Moines, IA)

The chapters which follow provide a detailed summary, across the 10 thematic areas, of the varied experiences and recommendations of people testifying at the hearings. However, it is important to remember that all agreed that IDEA should be reauthorized and that the most helpful and relevant Federal action at this point would be to strengthen its implementation and enforcement.

Statement of Law

Congress demonstrated a low tolerance for the exclusion of students with disabilities from the education system when it enacted the IDEA. Through the development of a principle which has come to be known as "zero reject," Congress required education agencies to provide all students, regardless of the nature or severity of their disabilities, with a free and appropriate public education. While the term "zero reject" is not found in IDEA's language, the concept is firmly embedded in the statute. Congress unequivocally declared that the purpose of IDEA is to assure that all children with disabilities receive a free appropriate public education (20 U.S.C. 1400(c)).

Witnesses at the hearings discussed the principle of zero reject, often in conjunction with other areas of concern such as appropriate education or the principle of the least restrictive environment. However, witnesses also had specific stories to tell concerning access, schools' exploitation of parents' lack of knowledge, and the exclusion of difficult-to-serve students.

Access

Although the only thing I needed was an accessible bus to take me to school, I was denied admittance to Girl's High. (Suzanne Bacal, Philadelphia, PA)

Why should it be that when a child shows up with a visible disability, say in a wheelchair or something, why is that child still automatically stuck in the dark room in the back? Believe me, the dark rooms in the back still exist. (Barbara Anderson, Milwaukee, WI)

In city after city witnesses complained of physical barriers in schools. They testified that there are still architectural barriers in school buildings and elsewhere in the community that make access difficult for those individuals requiring accommodations. Of the greatest concern to hearing participants is the inaccessibility of many areas for wheelchairs and the dearth of elevators that are in working order.

I was expected to stay back and be part of the special 6th grade because that school had an elevator and the school I was going to had steps. I learned to climb steps that summer. (Bernadette Griffin, Philadelphia, PA)

The school does not have any facility for handicapped [students] in the restrooms, none whatsoever. (Michael Kidd, Charlotte, NC)

Another concern in the schools is the physical accessibility to the classrooms and also to the bathrooms. (Rebecca Campbell, Anchorage, AK)

Educators' lack of awareness regarding the specific nature of these barriers and how they effect students with disabilities was especially problematic:

Make it clear that all SEAs, IEAs, AEAs, and LEAs are bound by the provisions of Americans with Disabilities Act. Frequently today an SEA will ignore all allegations of discrimination on the remarkable theory that discrimination is a civil rights issue, not an education issue. The fact is that the two issues go hand in hand...By separating the two, the SEA, the AEAs and the LEAs are effectively perpetuating the patterns of discrimination. (Denita Swenson, Des Moines, IA)

Parents' Lack of Information

One reason exclusion exists is that some school districts effectively exploit parents' lack of knowledge regarding their children's rights under IDEA. Parents tend to view professionals as authority figures. With great frustration, they often accept decisions of professionals not to provide their children with disabilities with special education and related services:

We had no idea what the law was...and even though we begged and begged for them to do something with him to help him learn, they wouldn't do anything. Every year he fell further and further behind. We were told when he was fourteen, by the principal, "I wouldn't worry. In a couple of years he'll be sixteen and he can quit." (Barbara Anderson, Milwaukee, WI)

Many witnesses also pointed out that exclusion sometimes exists because non-English speaking parents lack understanding of the special education system. Although their children must be evaluated in their own first language, these parents are not advised in any language other than English. This places them in a situation where they have no alternative other than to accept whatever decision is made by the schools, even if it is to exclude the child.

Difficult-To-Serve Students

Exclusion is also occurring because State or local education agencies lack the ability or willingness serve children with severe, complex or difficult-to-serve disabilities. Witnesses recounted tales of students being passed from teacher to teacher and school to school in an effort to push them out of the system as quickly as possible. In some extreme situations, schools simply advised parents that their children were not welcome within their classrooms and refused to admit them. In other situations, students were admitted, but schools then refused to educate them or provide necessary services to meet their needs.

I had a mom tell me that someone within the Mat-Su District told her, "Don't send your son to school. He's out of it anyhow. He's not going to get anything out of school." (Elaine Hurley, Anchorage, AK)

Many witnesses expressed concern regarding (1) the lack of available resources for children with behavior and emotional difficulties, (2) school districts that do not recognize behavioral difficulties (such as attention deficit disorder) as a disability, and (3) the lack of services for children with medical needs, including disputes regarding LEA obligations to provide related services to them. Too often, children with behavioral and emotional difficulties are shuffled throughout the local system until they are either "forced" to leave school or until they are incarcerated. In addition, local agencies refuse to recognize behavioral, emotional, or attention deficit disabilities, despite a medical diagnosis or the results of private evaluations. These agencies provide no interventions or services, or they expel students when their disabilities become too troublesome.

Discipline

In most cases...educational professionals use the following technique to deal with students who have emotional and behavioral problems: suspensions. This is not the answer to a child's disability. This action does not deter inappropriate behaviors. This action has not been shown to be effective in either changing behavior or improving the quality of education for students with behavioral disorders. (Pam Zacha, Charlotte, NC)

I do believe that children with disabilities right now are incurring a bad rap that they don't entirely deserve. I am here freely to admit that yes, some of those who are violent at school are children with disabilities, but some of the violence we see has nothing to do with disabilities as is defined in the law. (Virginia Richardson, Des Moines, IA)

Of the witnesses who spoke regarding discipline, there was little variance in the tone and tenor of their testimony. Three recurrent themes permeated their content in varying degrees, all recounting an unfortunately similar tale. These are stories of children who were suspended, expelled, or abused in direct violation of IDEA. Witnesses routinely recounted incidents of children who had behavioral or emotional disorders or attention deficit disorders being suspended because a local agency would not provide appropriate modifications and interventions. Ironically, those children were being removed from schools because of the same behaviors that qualified them for special education in the first place.

What is happening right now is that a lot of students who have severe behavior problems are literally being kicked out of school... They are not allowed to have the services met in alternative settings and [as] the door is closed to providing services in various settings as the needs require, more and more students with severe emotional problems and severe behavior disorders will not have any educational opportunity. (Charlotte Des Jardins, Milwaukee, WI)

Keep [the] "stay-put" procedures. Suspension and expulsion procedures should protect children. Too many children I know have been excluded from appropriate schools because of inappropriate support and inadequate implementation of IEPs. (Jan Serak, Milwaukee, WI)

When we get into who is not being served in education, it is kids with behavior problems, and that's pretty much across the State, particularly in small districts. They are the ones who are suspended, and then you go through those nightmare processes trying to figure out specifically what the intent of the law is in dealing with these children. (Patty Jennings, Albuquerque, NM)

Many witnesses indicated that the apparent intent of various local education agencies was to remove their children from the schools permanently. Offered unacceptable alternatives, parents have no choice but to keep their children at home, isolated from their peers, without the learning opportunities guaranteed under the law.

The school continued to call, and we continued to share the supports and services we knew needed to be in place, with the same results. "We can't. We won't. We tried. We don't have time. We have 49 other students. Emily is going to have to learn not to do that. She can't be with her peers because that's not where the special education teacher is." Emily communicated her frustrations with this very strongly, and the school listened to her by calling the police. So Emily is home again. (Jerri Miller, Denver, CO)

Witnesses also testified that abusive action toward children is an ongoing problem:

Repeatedly my son came home battered and abused. On the fourth documented time of abuse...and I'm documenting through my pediatrician...the abuse was so bad that I called the Police Department. (Bonnie Weninger, Milwaukee, WI)

We had an aide who was verbally and emotionally abusive. I tried to correct this by going and speaking to the [school] people...What happened? It blew up in my face. As a result, we had a principal who acted as judge, jury and executioner. Within five minutes, my grandson was suspended for five days, booted out of the district. (Claire Grandora, Albuquerque, NM)

Recommendations: Zero Reject

In order to ensure that IDEA's provisions prohibiting the exclusion of students from education based on the apparent or presumed nature or severity of their disabilities are more effectively implemented, the Federal government should implement the following recommendations:

1. Require State and local government entities such as public schools to be accessible to people with disabilities.
   
   
2. Improve and expand the process of providing information to all parents regarding their rights to access needed special education and related services regardless of the nature or severity of their children's special needs.
   
   
3. Clarify and strengthen the requirement that, except in rare instances of imminent danger to self or others, students with disabilities cannot be excluded or removed from school unless an individualized determination is made that their behavior is not related to their disability.

Statement of Law

Through IDEA, Congress intended to facilitate the assessment of students in a manner that accurately reflects students' strengths and needs and then determines the need for special education. To that end, IDEA requires States to establish procedures to assure that testing and evaluation procedures and materials are not racially or culturally discriminatory. Thus, tests must be administered in a child's native language or mode of communication.

Furthermore, no single procedure may be used as the sole criterion for placement of a child in special education (20 U.S.C. Sec. 1412(5)c)). Regulations require that complete evaluations be conducted before a child is placed in special education (34 C.F.R. Sec. 300.531). Evaluations must be conducted by multidisciplinary teams which include a teacher or specialist in the possible area of disability (34 C.F.R. Sec. 300.532). In addition, students placed in special education must be reevaluated every three years, or more frequently if conditions warrant, or if the child's parent or teacher requests reevaluation. (34 C.F.R. Sec. 300.534).

Because of continued concern over the discriminatory evaluation and placement of minority students in special education, when it amended the IDEA in 1990 (20 U.S.C. Sec. 1409), Congress required the U.S. Department of Education to conduct or fund studies to examine the overrepresentation of minority students in special education . Furthermore, applicants for grants from the Department of Education were required to show how they would address the needs of minority students with disabilities. The amendments also required discretionary programs to make greater efforts to prevent the mislabeling of students in special education. (20 U.S.C. Sec. 1409(j)(1)(B).

Major themes in the testimony regarding assessment for eligibility and the nondiscriminatory evaluation provisions of IDEA pertained to the following issues:

• Problems with labeling children, including misdiagnosis and mislabeling;
  
  
• Tests being administered in a student's native language and mode of communication, valid for the purposes for which they are used;
  
  
• Overrepresentation of minorities in special education;
  
  
• Lack of clarity in assessment criteria;
  
  
• Parent participation in evaluation;
  
  
• Independent evaluations;
  
  
• Timeliness of evaluations, including the preassessment process;
  
  
• Minimum competency testing; and
  
  
• Creation of new categories.

Each of these areas will be briefly described below.

Problems with Labeling Children

In order to receive special education, students are required to undergo evaluations. These evaluations often result in the assignment of a disability labels to students, based on categorical listings of disability types ("mental retardation", "severe emotional disturbance", etc.). As a consequence, the expectations of parents, professionals, and sometimes the students themselves are altered, often negatively. In many school districts, an automatic equation has developed between the assignment of a disability label, the assumption that this label is, essentially, life-defining, the lowering of expectations, and the placement of students with similar labels with other students "of their own kind." Witnesses objected to this process:

Parents feel that it is important for children to be looked at as a total child, not just as a label. (Beverly Roberts, Charlotte, NC)

I would like to see absolutely no labeling of students....If there is an educational need, there is an educational need, just do it. It doesn't matter what the child's label is. (Edris Klucher, Albuquerque, NM)

After 20 years of successful implementation of a non-categorical system of special education in Massachusetts, we wholeheartedly support such an approach. It facilitates meaningful inclusion in regular classrooms, and it does reduce stigma. It almost forces reliance on individualized planning, a true IEP. It also recognizes that children differ more within categories than between categories and that their educational needs are often not label-linked. However, it is not necessary to change Part B in order to move to a non-categorical system. (Martha Ziegler, Boston, MA)

The stakes for parents and children involved in the special education evaluation process are high. Parents do not like the labels and "prophecies" of their child's future that come with evaluations for special education:

My young son...must learn, build his own self esteem, and learn his valuable role in society. He doesn't need to be singled out by receiving a label and all the self-fulfilling prophecies that attach themselves to that label...So please advocate the reauthorization for changes that will stop the identification, segregation, and isolation of students with disabilities. (Fran Maiuri, Anchorage, AK)

One family spoke of their efforts to keep their adopted son's disability hidden from the school, even though they have adequate documentation for the child to receive special education services:

My family is doing whatever we can to keep our adopted son's disability hidden from the school, knowing that once the disability is labeled...the expectations that will arise will not at all be positive. (Witness,⁽⁵⁾ Anchorage, AK).

Typically, a child with special education needs begins school in a system which places labels on the child at a very young age. The child may fall into a label or category in which it is predetermined that their only goal in life is vocational:

I was told that Jon would do well at becoming a janitor or a handy man and not to expect too much from him. (Beth Gage, Philadelphia, PA)

While vocational programming may eventually be determined to be a proper course for individual students, it may not be the appropriate goal for other students (David Levy, Anchorage, AK). Such predetermination of program options based on the presumed nature or severity of a disability is in violation of the individualized assessment and programming provisions of IDEA.

Parents report that mislabeling and misdiagnosis have direct and adverse effects on the education of their children. One parent asserted that the label of "severely emotionally disturbed" had to be contested and removed before her child could receive an appropriate education (Tammy Stuck, Denver, CO). For this reason, she recommended that the State educational agencies be required to provide a full explanation when assigning this label to children. Another parent voiced her disaffection with the requirement that children have a categorical label at all:

We are tired of having our children labeled just for services. Give our children a chance to prove themselves. (Josie Torrez, Des Moines, IA)

However, another witness cautioned that school districts might interpret a reduced emphasis on categorically driven services to mean that they no longer need to provide necessary supports and services to students with special needs:

We also have concerns about proposed changes in disability categories which may result in denial of services for some students with disabilities or may result in dumping them in regular classes without appropriate support services. (Charlotte Des Jardins, Milwaukee, WI)

Another parent agreed that the special education labeling process is very stigmatizing to children and families, but was not in favor of disregarding labels altogether. She made the point that without labels, schools might not be accountable for the services they provide (Sara Gonzales, Albuquerque, NM). However, another witness stated the following:

We also need to break down the barriers at the national level that encourage school districts to segregate students, to identify and label students and place them in separate programs such as Chapter I, bilingual, migrant ed, Indian ed, and special ed. (Robyn Rehmann, Anchorage, AK)

According to Ms. Raymond, the requirement that students be labelled in order to receive assistance across a variety of Federal programs results in many school districts placing 40% of their students in one category or another.

Given the complex nature of this issue and the fact that all of the above-mentioned programs are covered under differing Federal statutes, it is difficult to envision a single satisfactory solution. However, one witness made the following recommendation with regard to special education programs:

Since most States operate funding systems based on categorical labels, these systems will require complete overhaul, often a very complex and controversial process. It would probably not be helpful for the Federal law to require such a change. Since labeling is not useful to children and, in fact, is often harmful to them, the Federal Department of Education should encourage States to move away from it voluntarily. Rather than move to change Part B at this time, perhaps OSEP could fund a study to determine the feasibility of such a change in the future. (Martha Ziegler, Boston, MA)

Native Language and Mode of Communication

Multi-cultural families often seem less aware of their rights in special education and also don't get the services they may be entitled to, often because of language barriers. (Elissa Gershon, Berkeley, CA)

I would be called a person of a minority, and I, myself, or my family do not consider ourselves minor in any way. I believe we need to use words such as "diverse-/cultural-/linguistic-ability backgrounds," rather than the word "minority," and I ask that IDEA move away from some of those kinds of labels. (Diego Gallegos, Albuquerque, NM)

Special education is sometimes perceived as being a kind of white middle class issue. I just want to point out and underscore what a number of parents here have said tonight. The kind of resources it takes for a family to get appropriate programs and services is so totally overwhelming in terms of time, energy, money, and skills, that it's really not surprising that the people who tend to be the most visible are the parents with the most resources. (Diane Lipton, Berkeley, CA)

Culturally sensitive evaluation, particularly testing in the student's native language, is a major issue. In the evaluation of students from different ethnic, racial, or linguistic backgrounds, persons on the evaluation team often do not speak the child's language and do not share the child's cultural or racial background.

Evaluation and assessment teams often do not include minorities, particularly Hispanics and African-Americans. Rarely is there an evaluation team member who speaks the native language of a family. Often, translation is done--if it is done--by people who are not familiar with the family. (Tom Patrick, Denver, CO)

In cases where translators are used, the outcome of the evaluation process is still dubious. Translations of tests are criticized, and persons who are translating for the evaluator are often unfamiliar with students and their families. In one instance, a Native American child was unresponsive until his mother was allowed to translate the test into his native language (Tom Patrick, Denver, CO). In one school district described in the testimony, evaluations could be conducted in the child's native language (Spanish, in this case), but only if a translator was available. Translation and adaptation of standardized testing procedures are inadequate solutions to the cultural differences found in many testing situations across the country.

Certain Latins...don't know the language. We don't know English. We should not be frightened of professionals. We should be proud, and we should demand the best for our children even though it may be in Spanish. (Reina Fernandez, New York, NY)

Though school psychologists attempt to adapt their testing protocols to meet the needs of Native American children, this translation has not always been successful. (DuWyne Geist, Denver, CO)

One parent spoke for many when he explained the way parents perceive the school's treatment of them as minority persons:

Other concerns families raise is the lack of respect for individual differences, values and preferences. When parents are asked if evaluations are sensitive to cultural values and linguistic backgrounds, they often say, "No." (Tom Patrick, Denver, CO)

For students with certain disabilities, even tests in their native language may be inappropriate to the purpose for which they are used, because they are not consistent with the child's manner of communication. For example, standardized tests may be particularly inappropriate for students with autism:

I believe strongly that the Stanford-Binet, Bender, and similar psychological tests are inappropriate for children like [my son]. The tests do not adequately measure our children's intelligence because often the students do not understand what is required of them, even though they may have the knowledge or ability to complete the task. Consequently, they end up with a poor showing and low scores....New tests need to be developed. They should be more practical, less academic, and administered in a manner consistent with the methods of communication that the autistic and other members of our mentally challenged population employ. (Marjorie Gouldbourne, New York, NY)

Where schools and States have turned away from strong reliance on traditional standardized tests for the purposes of student evaluation, parents have supported that change. Curriculum-based testing is one example of an alternative (and preferred) assessment method, because it leads to educational strategies and objectives, rather than simply identification (Judy Plzak, Philadelphia, PA). One parent with long experience in special education commented that in his state (Montana), the assessment situation is certainly better than it was 50 years ago. In general, there is less reliance on IQ tests and more reliance on classroom observation, local norms, and evaluation of classroom performance (DuWyne Geist, Denver, CO).

Other parents criticized testing procedures that are stigmatizing because of their dissimilarity to those used by general education. They strongly questioned the usefulness of tests that turn their children into little white rats (Diane Cox, Denver, CO), and recommended that standards-based educational assessments would be more appropriate for their children.

Why do we still have to be different? Why are our children tested every time they turn around: daily, weekly, monthly, yearly, triennially, informally, formally. [It] makes no difference...some testing is okay, but a lot of it is just purely obnoxious. It should look like standards-based education for the other children. (Diane Cox, Denver, CO)

I wrote the [school district] telling them that Casey would need to take the springtime standardized eighth grade test in an untimed manner and in a quiet place, per his doctor's orders....They refused to modify the test. Even after I checked with the State Special Ed Department (which said, of course, it could be modified)...I was told no....We decided not to subject Casey to an inappropriate testing situation. (Judy Bonnell, Albuquerque, NM)

Parents also complained that proper safeguards are not in place to prevent evaluations without accommodation. For instance, parents had to take a child with dyslexia outside of the school system for private testing (Jill Rigsbee, Charlotte, NC). In another situation, an evaluation was performed on a legally blind child using a visual test. Because of this obviously discriminatory test, the child was labeled mentally retarded (Jane Hasty, Charlotte, NC). Other parents stated that they wanted to have their child independently evaluated because the school was conducting tests on visually impaired students without proper accommodation (Robin Ann Tracy, Boston, MA). Several parents requested sanctions and fines on school districts who blatantly misevaluate children for special education (Robin Ann Tracy, Boston, MA; Judy Bonnell, Albuquerque, NM).

On a more positive note, witnesses testified that assessments related to IDEA-sponsored early intervention programs (birth to three) on some Native American reservations were working and that funding for these programs should continue. For example, when an early intervention program first started at the Laguna Pueblo (NM), community members were skeptical about the program. However, the fact that the early intervention professional was also a Native American helped to gain the trust of the parents:

I felt that the families were a little bit reluctant. [Even though] I'm a member of their own tribe, that they still considered me an intruder of some type, because a lot of other times when programs came in, they felt that there were too many people hounding them or hovering over them and wanting them to do this and do that, but as I explained to them, I'm also the parent of a child with disabilities, and that made it a little bit easier. I share their culture and beliefs, and I encourage them to use traditional medicines, never doubting that, and that always comes first, but at the same time, getting them to believe that in reality, too, there is something different. And that's how I've gained a lot of the parent's trust. I'm hoping IDEA will continue, so that our children will continue to benefit from these services and the programs...that more can be established, to give the tribes an opportunity to establish more of these programs for them. (Norberta Sarracino, Albuquerque, NM)

On the subject of cultural and linguistic sensitivity, witnesses made the following suggestions:

• IDEA can discourage discrimination and encourage access to needed services for multi-cultural populations by requiring evaluations to be done in the student's primary language, providing interpreters, and providing translation services. (Elissa Gershon, Berkeley, CA)
  
  
• IDEA should require coordination between bilingual general education programs and special education programs so that access to these services is the same. (Elissa Gershon, Berkeley, CA)
  
  
• IDEA should require outreach programs directed at minority communities and families to educate parents about their children's rights. (Elissa Gershon, Berkeley, CA)
  
  
• IDEA should strengthen its parental notification requirements to ensure that parents are given advance notice of their right to participate in their child's education process. (Jeannie Manuelito, Albuquerque, NM)
  
  
• IDEA should require non-discrimination training for school personnel, including the unique communications and learning styles of children and their parents who are from diverse backgrounds, to ensure that children from varying cultural and linguistic backgrounds are not subject to discrimination. (Jeannie Manuelito, Albuquerque, NM)
  
  
• Diversity among special education professionals can be improved if funds continue to be targeted at minority institutions for the purpose of recruiting and preparing minority college students to enter the special education field. Moreover, institutions of higher learning in which 25% of the student body is a part of a minority population should be considered minority institutions which qualify for these funds. This 25% figure should be retained and not increased. (Deborah Doherty Smith, Albuquerque, NM)
  
  
• The Part H requirement that the Individualized Family Service Plan (IFSP) meeting be held within 45 days of the initial special education referral should be lengthened. This does not allow enough time for a child living a rural area to be evaluated because the child must come to a city or the evaluation team must go to the rural area. Moreover, it is not enough time for parents of diverse cultures to process the need for special education services. (Susan Jones, Anchorage, AK)
  
  
• The funding formula for early intervention should also take into account and increase the funds for a particular State depending on the cultural diversity of the population, geographical dispersion of the population, and the number of children living in poverty, because it is more expensive to provide services to these populations. (Susan Jones, Anchorage, AK)

Overrepresentation of Minorities in Special Education

The overrepresentation of minority students in special education also was discussed by witnesses at the hearings. One witness, who has extensive experience in this area through her personal experience as a parent of an adult with disabilities and her work at a parent training center, explained that cultural differences between students and school staff may account for the troublesome statistics.

Sometimes black students tend to be more verbal, tend to be a little more touching, a little more jostling. I think some times because the majority of the professionals who work with these students in school are majority persons...there is not anybody in that culture to even help problem solve, to help them come up with creative answers...

There are many reasons for this, and if knew all the answers, I would be in Washington getting a lot of money. But some of it has to do with the ability of parents to understand what rights they have to keep their children out of special education. (Virginia Richardson, Des Moines, IA)

Other witnesses echoed this sentiment:

I have been in special ed for 20 years. I believe that children of diverse backgrounds, especially children from different linguistic backgrounds, are way over-identified in special ed. It's an area of concern for us. It's an area we're working in. It's also one that, in the past, there has not been enough attention to, in my opinion. (Diego Gallegos, Albuquerque, NM)

We have to eliminate all the bias we now still see for referral of students from minority backgrounds. (Fran Maiuri, Anchorage, AK)

Over-identification of disabilities in minority children is a known flaw in the cultural identification techniques, which fail to factor in cultural differences. The over-identification has led to an inordinate percentage of children of color who are placed in special education programs. Today these programs essentially segregate them from the full academic and cultural experience. The impact of minority status, cultural factors, and level of severity of disability must be adequately addressed in order to effectively meet the needs of children. (Paul Spooner, Boston, MA)

While overrepresentation is a problem, underrepresentation of minorities can also be a problem. Minority children are often on long waiting lists to be assessed for special education, especially if their parents do not use English as their primary language. The parents often do not have access to or understand information about how their children are doing in school and their children's rights to special education (Diane Lipton, Berkeley, CA). Underrepresentation of minorities in special education also occurs because school districts cannot afford to engage in the outreach activities required by the IDEA (Birgit Schweingruber, Berkeley, CA).

Witnesses made the following suggestions for addressing the overidentification (and sometimes, underidentification) of students from diverse backgrounds in special education:

• Other States could learn a lesson from Alaska, where a majority of students are from mixed or non-English homes and are economically, experientially, and culturally out of the mainstream; yet Alaskan school districts still have low special education child counts. This is not because of the underidentification of students who need special education services but rather because the regular education program accommodates a wide range of student diversity and because disability identification proceedings respect that students' cultures, languages, and life experiences are different from those assumed by our Anglo-based traditional measures and procedures. (Christopher Robinson, Anchorage, AK)
  
  
• Special education should be restructured from its current quasi-medical model built upon supposedly empirical categorical labeling to greater education services for everyone. Special education can prevent the overidentification of students by discontinuing evaluation practices that rely upon normative, time-limited extractions of data in unnatural settings. The identification of students for special education should utilize functional assessments, diagnostic teaching strategies, evaluations which take place over time in natural environments, as well as observational and clinical impressions of each student's ability. (Christopher Robinson, Anchorage, AK).

Parent Participation in Evaluations

Families complain of evaluations that are done in places that...their child is unfamiliar [with], rather than in their home or familiar child care settings. The time of the evaluation rarely coincides with a child's, quote, "good period," or at a time and place which is convenient for both parents to participate. (Tom Patrick, Denver, CO)

Sometimes a "behavioral impairment" is the only label that a parent will ever get. I had one psychologist tell a parent, "Well, you don't need to know what's wrong with your child. You just need to do what we tell you to." "Seriously," I said, "What is this child's diagnosis?" And this psychologist sat there and talked about the child. It was very obvious he had a major mental illness, and he refused to tell the parent what it was, [saying] that he was only "behaviorally impaired." (Cindy Sirois, Boston, MA)

All in all, most parents reluctantly accept the burdensome...but necessary (Deb Sherer, Denver, CO) evaluation process, but they wish for something better. Currently, without evaluation, students with disabilities could not get the services they need, and parents generally believe that good assessment is key in getting an appropriate education. However, along with the concerns noted above, many parents believe they were not valued as equal participants in the evaluation process (Tom Patrick, Denver, CO). Parents and persons with disabilities sharply criticized the assumed predictive results of superficial testing procedures compared with the day-to-day experience of living with, or as, a person with a disability:

I can't tell you how many IQ tests and psychological evaluations I went through every year with someone that I had never met before. In an hour, they were going to decide my psychological status, my IQ, and my abilities, and that was used for my educational plan. (Julie Farrar, Denver, CO)

Over and over again, parents testified about being shut out of the assessment and evaluation process. One barrier to their participation in the evaluation process is the use of technical or other language unfamiliar to ordinary persons. One parent explained that as a Spanish-speaking person, she listened to the results of an evaluation, not understanding anything that was said (Reina Fernandez, New York, NY).

Witnesses made the following suggestions to improve parent and student participation in the assessment process:

• Provide parents with a draft assessment that invites their comments and review prior to staffings and IEP meetings. (Tom Patrick, Denver, CO)
  
  
• Conduct evaluations in familiar environments, like the family home or child care situations. (Karen Fernandez, New York, NY)
  
  
• Interview the child and family at home, where the needs of the entire family can be assessed, including needs for related services, like parenting assistance, or family, individual, or sibling counseling. (Karen Fernandez, New York, NY)
  
  
• Send information on developmental milestones home with babies from the hospitals when they are born, emphasizing prevention and early identification. (Karen Fernandez, New York, NY)

Lack of Clarity in Assessment Criteria

Parents who were particularly concerned about children with attention deficit disorder (ADD) requested that guidance regarding the identification and testing of students with ADD be placed in the law. One parent discussed her difficulties in getting her child evaluated:

Our system will not even test for ADD, although the law requires it. Our system will not implement even the most rudimentary classroom tactics to deal with the disorder. They refuse to discuss it, test for it, and deal with it in any way. I do not understand how they manage to completely ignore a disorder that the law has mandated will be addressed. (Judy Bonnell, Albuquerque, NM)

Another parent characterized ADD as a disability that affects children in many aspects of their lives. She asked for a broader interpretation of the term "adverse educational impact" which is used in the determination of eligibility for special education:

In most States, "adverse educational impact" is interpreted as meaning "documented academic failure." Only then are aid and support offered....It shouldn't rely solely on eligibility criteria that requires documented academic failure..."adverse educational impact" [should] be assessed on the basis of the student's overall academic, behavioral, and social functioning. (Julie Doy, Des Moines, IA)

Alternately, another parent suggested that attention deficit disorder might be considered under the "Other Health Impaired" category (Barbara Duvall, Berkeley, CA).

In another area, students with learning disabilities who are also gifted, while not yet failing academically, often suffer great personal frustration due to their disability. Witnesses concerned with these students requested greater guidance and assistance:

I know there are children who have learning disabilities, but for various reasons did not qualify for services with traditional testing. I know my child and others did not qualify for help based on the testing that was being done, but are in need of services. Why can't we use more than one option for testing our children? We are all unique, even in our disabilities. (Lynette Jensen, Des Moines, IA)

Sometimes I feel that children with a learning disability are considered children of a lesser God or a lesser disability...It's an invisible kind of disability, and what happens is people think, because he looks so-called "normal," that he can do other things that other children can do. (Karen McGinley, Boston, MA)

Because learning disabilities are a hidden handicap, it's easier not to provide them with the services that they need even when they do have a diagnosis. For a student who's got attention deficit disorder and a specific learning disability in addition to that, it's easier to just give them Ritalin and not to give them that educational experience. For the student who comes from a deprived home, it's easier to blame their learning problems on the deprived home than it would be if they were in a wheelchair. (Dave Gordon, Boston, MA)

Independent Evaluations

Typically an IEP will state the method of evaluation is "teacher observation," which, although it is very, very valuable, should only be one piece of how the program is evaluated. (Laura Glomb, Boston, MA)

Our brief involvement with the public school system involved their initial evaluation that they were going to use to devise his educational plan and place him. It took place in a 4-by-7 room with Peter and myself, a teacher that was not a certified special education teacher, a physical therapist, and an occupational therapist. It took a grand total of 45 minutes, during which there was no hands-on work with Peter. There were generic questions directed at me...This team seemed to feel that, through this evaluation, they would be able to write an IEP for Peter and recommend appropriate placement...That concerned me greatly. (Melissa Constantine, Boston, MA)

Parents often turn to independent evaluations when their evaluation requests are not honored by districts or when they are seeking more acceptable alternatives to the programmatic options offered by a school district. These parents strongly support provisions for independent evaluations as a tool they need to advocate for appropriate educational programs for their children:

Outside evaluations must be easier to obtain