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 to avoid bias and to obtain expertise for specific disability categories. (Jan Serak, Milwaukee, WI)

Parents reported on using outside experts to help them get educational accommodations and services they needed. However, many parents testified that their attempts to negotiate students' programs through using independent evaluations were met with resistance from school districts. One parent, who brought an independent evaluator to meet with school staff, was told that the staff would only be in a listening mode (Greg Omori, Des Moines, IA).

We invited one of the evaluators, who had a Ph.D., at our expense to come to Dubuque to observe Alex in a school setting...We were told later that the independent evaluation was considered, when honestly, it was ignored. (Greg Omori, Des Moines, IA)

Timeliness of Evaluations

There is no real standardized way of accepting the child into special education or getting him the right of amount of hours with the right amount of services. I think [teachers] feel like it's a generic kind of system....The regular education teacher's going to say, "Oh well, look, he walks funny. He doesn't walk like I do--Adaptive P.E." That's put on the IEP and the kid's in. Now I have to go and I have to start looking for ten pounds of paperwork because the kid was never assessed, never referred, and the parents were never informed. (Sam Reder, Anchorage, AK)

The evaluation process is the gateway to getting special education services. Several parents testified that the entry of their children into special education services was delayed by several factors. First, pediatricians are sometimes unresponsive to parental concerns about their child's development, or they wait to see if any perceived problems will resolve themselves through the normal development process. Also, a required "preassessment process" after a problem is noted at school can cause delays, or even denial of special education services. As one parent stated, when it comes to initial evaluation, time is of the essence (Josie Torrez, Des Moines, IA).

One witness recounted her plight and that of her child, Jenny, in trying to obtain a timely evaluation for services when they were homeless. An interpreter read her statement and described her struggle as follows:

Juliana went through a great deal. She had no services, was homeless with her child. She spent a lot of cold days, slept in someone's house on the floor with her child. The child had no wheelchair...Jenny had never been to school in her life. She is multiply handicapped, is blind, has cerebral palsy, and some other disabilities. It took a year from the request for evaluation to placement of this child [in special education]. (Juliana Rosario, New York, NY)

Another child was hospitalized several times for psychiatric problems but was not evaluated for a learning disability by the public school system until eight years later (Cindy Sirois, Boston, MA). One witness testified that the state of Tennessee has 4,373 children who have been referred for evaluation but have never been assessed (Pam Zacha, Charlotte, NC).

Some parents thought student assessment teams (often employed in the pre-assessment process) should be used more, with special education professionals involved in these teams. However, others viewed the student assessment team as a barrier to getting needed services. These parents were also concerned about protecting their children's rights while in the preassessment and evaluation process. Numerous parents suggested that when a school system does not have adequate personnel to perform evaluations in a timely manner, it should be required to pay for private or independent evaluations.

Minimum Competency Testing

I asked how they tested special ed students. I was told that students sometimes take standardized tests just to have the experience, but the test serves no real purpose. How demeaning! (Judy Bonnell, Albuquerque, NM)

I am the only Down syndrome student that has ever passed a placement test at TVI [Technical Vocational Institute]. (Nannie Marie Sanchez, Albuquerque, NM)

The educational movement toward statewide assessments, often conceived and referred to as "minimum competency testing," was discussed in relationship to how students with special needs are included in this process. This is a complex issue, and not directly related to evaluation for the purposes of identification. However, it is indirectly related to identification, in that testimony indicated that teachers were under pressure to identify low-scoring students as "special education" students, thereby eliminating their test score from their class total (Liz Hesse, Denver, CO). Thus, in this instance, minimum competency testing can cause increased referrals to special education.

Parents also discussed the effects of minimum competency tests and testing procedures on their children. Students with special education needs may require adaptations to take such tests, and there is a lack of clarity about whether these adaptations invalidate the tests themselves. Parents recommended that students with special education needs be included in the testing procedures, with needed adaptations, unless their IEP team decided that they should be exempt. As one parent, a former recipient of special education, stated:

Special education referral should never automatically exclude a student from standard expectancies. (Liz Hesse, Denver, CO)

Creation of New Disability Categories

Several witnesses advocated for the creation of new disability categories or for changing current definitions of existing categories in order to accommodate various disabilities.

Neurobiological Disorders

I would like to have...a category of neurobiological disorders...that encompasses the children who have schizophrenia, bipolar disorders, and attention deficit hyperactivity. (Delfy Roach, Albuquerque, NM)

Many parents advocated for the creation of a separate category for neurobiological disorders (NBDs). One parent spoke about the problems of fitting neurobiological disorders within existing disability categories:

I would like to speak about these children that we like to call children with neurobiological disorders. Our children are very stigmatized when they're served under the category of SED...As their parents, many times, when we go to try to work with the schools, our advice and our input is discounted because we're seen as the cause of their disturbance...The families that we represent would like to see a change in the SED category, to truly talk about what's going on in the brains and central nervous systems of children with special learning needs...because research has shown that many of the behaviors and the learning needs of children are generated because of...the brain dysfunction, and so we would like to see that reflected in the law. (Sara Gonzales, Albuquerque, NM)

Parents recounted a number of bad experiences that occurred because their children with neurobiological disorders were placed in inappropriate special education categories. One woman's son had a neurobiological disorder and was placed in the category of "seriously emotionally disturbed" for five years. This classification did not fit his needs, but it was the only way he could get services for him to stay in school:

"Seriously emotionally/behaviorally disordered" does not appropriately address the issues that our children have, and I think we do a great injustice to these kids. Too much time is spent on trying to cure the illness through behavior modification, through behavior management, and what happens is our kids get very frustrated, they get treated inappropriately, academics suffer, and self-esteem suffers. (Delfy Roach, Albuquerque, NM)

One parent had a daughter with a neurobiological disorder who was labeled as "seriously emotionally disturbed" for eight years before she had brain surgery which confirmed she had a neurobiological disorder. She is now classified as "other health impaired: neurobiological disorder" (Rebecca Viers, Albuquerque, NM).

The regulations interpreting IDEA now define SED as an inability to learn that cannot be explained by intellectual, sensory, or health factors. Clearly, children who suffer from NBD have an illness that explains their episodic inability to learn. Our recommendation that a separate category for NBD children be established would place neurobiological disorders...on a par with specific learning disabilities, autism, and traumatic brain injury, each of which the current law recognizes as a category separate from SED. (Rebecca Viers, Albuquerque, NM)

One parent testified that her son, who had a neurobiological disorder, was classified as having communication and behavior disorders. The behavior disorder program he was placed in used physical restraints, which only made her son become aggressive and made his neurobiological disorder more problematic (Betty Cope, Albuquerque, NM). Finally, one woman reported that her son ran away from school and wrote a suicide note due to the fact that he was not receiving the proper services for his neurobiological disorder (Joy Angelino, Albuquerque, NM).

I beg of you to consider a category for children with neurobiological illnesses, separate from the category of seriously emotionally disturbed. (Joy Angelino, Albuquerque, NM)

Emotional Disability and Mental Illness

I feel that children with major mental illness should come under the category of "Other Health Impaired." (Cindy Sirois, Boston, MA)

A school provides services to adolescents receiving treatment (often drug and alcohol treatment) in a locked unit, [in a] residential hospital. When the school tries to get public funds to help provide services for the children, it is problematic because the children do not fit the existing parameters of what a disability is...Mental illness should be made a disability under IDEA and parameters set for the funding of children who suffer from mental illness. (Patrick Cabellero, Albuquerque, NM)

The National Mental Health and Special Education Coalition is suggesting that the term "seriously emotionally disabled" be changed to "behaviorally/ emotionally disabled." A new category dealing specifically with brain disorders and brain functioning should be implemented. (Rebecca Viers, Albuquerque, NM)

One witness described recurring situations where children leave psychiatric treatment facilities and then attempt to access special education services through schools. Often, such children have undergone psychiatric evaluations, but the evaluations use medical terminology and cannot be used to certify them as "seriously emotionally disturbed" in order to qualify them for special education services. Instead, these children must then undergo evaluations by psychologists who will use "proper" terminology so that they may qualify for special education.

Let's say that I just recently have a child who came back from residential psychiatric treatment. We have a psychiatric evaluation that we cannot use to certify him under the Federal definition for SED because they use medical terminology...We're having to have a school...psychologist go out there to do the evaluation in order to get the child certified. A new definition of SED should be promulgated which is consistent with the medical terminology used by residential psychiatric treatment centers. (Pamela Carter Simpson, Anchorage, AK)

Summary of Assessment for Eligibility and Nondiscriminatory Evaluation Issues

The evaluation process continues to have problems that directly impact on the implementation of the law and the regulations. Parents have many and varied concerns about the process and their empowerment within the process, but parents also envision evaluation as an integral part of offering special education services. One parent, who works for a parent training center, was particularly eloquent when she linked evaluation to the larger educational process:

Evaluation is a beginning, not an end. The evaluation of each goal is the beginning of the next goal. Parents see the growth and development of their children and understand that accomplishment of one skill leads to the building of the next. Teachers, too, need to see the un-endingness of their task of teaching. Evaluation and reassessment of skills being taught continuously branch out to more and more skills in a never-ending process of lifelong learning. Never should a child be placed on hold awaiting the next IEP or three-year evaluation before allowing the opportunity to build on the skills achieved. (Nina Baker, Des Moines, IA)

Evaluation and education are a part of a child's life, key to accessing support and having opportunities to learn, have friends, and enjoy life within their families and school communities.

Recommendations: Assessment for Eligibility and Nondiscriminatory Evaluation

In order to improve and strengthen the assessment and nondiscriminatory evaluation provisions of IDEA, the Federal government should implement the following recommendations:

1. Change the orientation of special education assessment in general from its current quasi-medical model built upon categorical labeling to more individually responsive and relevant assessment measures. Special education can prevent the overidentification of students by discontinuing the use of evaluation practices that rely upon time-limited data gathered in unnatural settings, which often do not take into account a student's cultural or linguistic background. The identification of students for special education should at least be expanded to utilize functional assessments, diagnostic teaching strategies, evaluations which take place over time in natural environments, and observational and clinical impressions of students' strengths and needs.
   
   
2. Encourage State and local education agencies the flexibility to adopt a noncategorical approach to serving students with special needs. This would change the focus of evaluation and assessment efforts from discovering and fitting a student's learning needs into a predetermined list of categories to a focus on determining what types of assistance the student needs and how this assistance might best be delivered.
   
   
3. If a noncategorical approach to eligibility is not adopted, students with neurobiological disorders should be eligible to receive special education and related services under the "other health impaired" category, if the assessment team determines that the student has special learning needs.
   
   
4. Enforce the requirements that evaluations be done in a student's primary language and be consistent with the student's primary mode of communication (e.g., sign language), that testing take into account the nature of the student's disability (e.g., blindness), that interpreters and translation services are available, and that the student's cultural background is taken into account.
   
   
5. IDEA should require coordination between bilingual general education programs and special education programs so that students may avail themselves of the full array of services offered under both of these programs.
   
   
6. 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. This should be accompanied by establishing or strengthening outreach programs directed at minority communities.
   
   
7. IDEA should require nondiscrimination training for school assessment personnel to ensure that children from varying cultural and linguistic backgrounds are not subject to discrimination.
   
   
8. Fairness in evaluation and placement will be improved by continued support of diversity among special education professionals made possible through funding targeted at minority institutions for the purpose of recruiting and preparing minority college students to enter the special education field.
   
   
9. Parents should be given the authority to extend the current 45-day time limit for the completion of an Individualized Family Service Plan (IFSP) under Part H in order to accommodate families living in rural areas and to ensure that families from diverse cultures fully understand the process and its intended results.
   
   
10. The criteria for allowing students with attention deficit disorders, learning disabilities, and neurobiological disorders to receive special education and related services should be based on the student's overall academic, behavioral, and social profile, rather than solely on documented academic failure.
    
    
11. Unless there are specific parental or student waiver statements on a student's IEP, it should be presumed that all students with disabilities should be included in the overall school assessment and testing program.

Statement of Law

An appropriate education is one that (1) is specially designed to meet a student's needs, (2) benefits the student, (3) is based on an appropriate, nondiscriminatory evaluation, and (4) is described in the student's individualized education program (IEP). The student's IEP must state the student's present level of educational performance, short term objectives, and one-year goals, as well as the services the student is to receive (including related services), the extent to which the student will be able to participate in regular education programs, and criteria and procedures for annually determining whether the objectives are being achieved (20 U.S.C. Secs. 1400(b)(2) and (3), 1401(16), (17), (18), and (20)).

By the time a student turns 16, the student's IEP must describe transition services (20 U.S.C. Sec. 1401(a)(19) and (20)). When an infant or toddler is receiving early intervention services, there must be an individualized family service plan (IFSP) that describes the services to be provided to the child and the family (20 U.S.C. Sec. 1477).

Appropriate Education Generally

Testimony regarding the issue of appropriate education was mixed: Some witnesses testified that they believed that they or their children had received an appropriate education; others were less positive. In testimony regarding her son with cerebral palsy, one mother expressed her overall satisfaction with the process:

A key to Michael's success has been the teamwork of all the educational professionals involved in Michael's program. The IEP process has allowed us to carefully plan and individually tailor Michael's educational goals and objectives. (Susan Tachau, Philadelphia, PA)

A former special education student felt differently:

I was viewed by some educators as "different." I felt like anyone else in the room, because of who I am, and I am proud of my disability. My family has always had to fight every step of the way so that I could take classes. Professionals in the schools and in this community have always placed limits on my capability and have not given me opportunities. They laugh at my needs. In our school, we have some teachers who are concerned and want us to walk away with skills to become productive citizens in our world community, but there are teachers who have made fun of me in front of my peers because I am disabled. (Nannie Marie Sanchez, Albuquerque, NM)

Some parents testified that the IEP allowed their child to be successful in school. In one situation, the IEP responded to a student's challenging behaviors by specifically explaining how to redirect the child's self-abusive behavior, thus enabling the student to manage his own behavior more effectively. Other parents and students testified that as a result of their IEPs, they found success later in college and even carried this individualized approach over to their college education. However, in spite of testimony of this sort, there was a great deal more testimony about problems with IEPs.

Individualized Education Programs (IEPs)

Parent and Student Involvement and the IEP Meeting

In regard to the IEP process itself, I wish it stood for "Individual Encouragement to Parents." If we could change it, I would change it. In many ways this public law has become our enemy. Educators are being consumed by accountability and the IEP process itself. This process is not a true process at all sometimes until due process...the reason being minimal parent involvement until it's too late. The IEP process is so labor intensive that it actually drives us away from the child instead of closer to the child. It has become a burden to our professionals. You may have five to eight professionals on a team and not one of those people really possesses a true trusting relationship with the parents. Not one sees the big picture of this child's life, because they are caught up in the accountability, they are caught up in time, which also becomes their enemy. (Kathy Davis, Des Moines, IA)

At every hearing site, witness after witness testified that the IEP process is extremely frustrating, often intimidating, and hardly ever conducive to making them feel that they were equal partners with professionals:

I believe parents come to the IEP meeting as an unequal partner. Our signature means only that we were present at the meeting. (Christi Murn, Milwaukee, WI)

Before you can educate a child, you have to educate their parents. A parent who knows little about their child's disability and even less of bureaucratic process involved in educating his child is at a serious disadvantage. (Lisa Reader, Albuquerque, NM)

Regarding IEPs, more often than not parents are presented with what is more or less a completed IEP at their planning placement team meeting...The goals and objectives are generally very, very, vague, nonspecific and often don't have an appropriate way to evaluate whether the child is making progress in his or her program. (Laura Glomb, Boston, MA)

Many parents stated that school officials did not respect their opinions and did not attempt to include them in developing their children's goals and objectives. One parent testified that she had to become loud and obnoxious in order to express her opinions at the IEP meeting and to get the services that she thought her child needed. Teachers often arrived at the IEP meeting with a completed IEP, causing the parents to feel that their input was not important. Some parents did not receive notice of IEP meetings, nor did they receive copies of the completed IEP. Some IEP meetings were described as hostile. Parents felt intimidated because they did not know what to expect from the IEP meeting, their rights as parents under IDEA, or the technical language used by professionals.

Each year I speak frankly, clearly and in English that I feel Katie is not in an appropriate program. To quote, "We've tried our best Mrs. Reed," is what I always hear. Each year I put another candle on the cake, and when I blow out Katie's candles, I say, "Maybe this year, Katie, maybe this will be the year we have the right teachers, the right program and the right way to communicate with you"...In two days we'll light another candle on Katie's cake and another year will have gone by. I'll still make that same wish: that this year maybe things will change. (Catherine Reed, Boston, MA)

Parents know their children better than anyone, including teachers and other professionals, and their input should be respected, recognized, and utilized in developing their child's IEP.

Some of the witnesses were former students, and two of them commented on the IEP process as follows:

I got teachers that would not help me...I never went or was invited to my IEP meetings...No one ever told me about my disability. I don't really know what my disability is...Twelve years of special education should have prepared me for a life without so many unnecessary problems...with the education I should have had [as] my right under IDEA, things would be better for me and for my children. (Linda Melendez, New York, NY)

I think that special education has its particular poignance when kids are young and I think that often, children--and I don't care what kind of disability the child has, whether it is cognitive or physical--are not often asked what they want, and therefore, they are given a double message. They are being told that they need not be asked what they want. (Lisa Janoff, Philadelphia, PA)

Witnesses suggested how the IEP process might be improved:

• Parents, together with the school's IEP team, need to establish an open line of communication regarding the parent's role in the process and the services available to the child.
  
  
• An administrator needs to solicit and collect input from the parents, other teachers, and therapists before the meeting and then identify areas of concern and disagreement, thereby enabling the meeting to run more smoothly.
  
  
• Concerns and problems could be alleviated through parent education about the IEP process, technical terminology, and parental rights under IDEA. Such an education program would inevitably enable parents to feel more control over their children's education and lessen the struggle with school professionals.

The IEP Itself

I've been to 57 IEP meetings. Not once, not ever once, did a school offer a regular class placement as a placement for a child. Beyond that, they never offered, never discussed, never considered what kinds of supports, modifications, options would be necessary for a child to succeed in a regular class environment. Children are placed within existing programs, they're placed categorically and/or into existing programs. (Laura Glomb, Boston, MA)

A major theme running through the testimony at every hearing site was that the IEP should be based on the child's individual needs and on high expectations for achievement:

The child's IEP should reflect the growth she needs to reach her highest potential. (Nina Baker, Des Moines, IA)

Children with disabilities must be ingrained with the idea that they deserve nothing less than to live, rather than merely to exist. (Bernadette Griffin, Philadelphia, PA)

I'm concerned that many times it's proven easier to find a volunteer or a teacher's aide to provide such skills as note-taking for blind and visually impaired individuals rather than teaching that student and providing that student with the appropriate technology to do that independently. (Brian Charleson, Boston, MA)

Some witnesses testified that the short-term goals and objectives of the IEP can serve as the benchmark of effective learning and teaching and that they are extremely important to focus the child's time and resources. Witnesses stated that these goals could be improved by using family strengths and values to develop the goals, ensuring their relevance. However, other witnesses testified that the short-term goals are unnecessary and that the IEP is merely a paperwork exercise, filled with meaningless criteria and overly-broad goals, rather than an effective teaching tool. One parent expressed frustration because at one point her child's IEP did not contain enough objectives. The school responded with an IEP that contained a total of 99 objectives!

IEPs do not have the proper goals. I had an IEP meeting yesterday. There were no academics on the IEP. (Linda Thompson, Anchorage, AK)

Witnesses discussed a variety of ways in which children with disabilities are partially excluded by a local education agency's inability or refusal to provide appropriate interventions, supports, and related services. In too many cases, appropriate services that have been mandated in a student's IEP and approved by the multidisciplinary team have not been provided appropriately or, in some cases, at all. Many witnesses testified about the cessation of approved related services because of an independent decision made by an individual provider, a school district, or a district official:

Even though I was told that New York State education policies require that the same support services be available to children in private schools as they are to children in public schools, my request was denied. Finally, after much hard work I got the district to include consultant teacher services on my son's IEP. However, the city never implemented it, and we are now in the second year of having the city completely ignore its legal responsibilities. (Karen Robard, New York, NY)

Witnesses identified a variety of other examples wherein services requested (and often approved) in IEPs were not provided:

• A school's refusal to teach sign language to non-verbal children as a communication technique;
  
  
• Delayed development of social skills in youth with disabilities because of their being transported great distances from home schools, rendering them unable to participate in extracurricular activities and limiting their social interaction with peers;
  
  
• Students who are receiving homebound instruction receiving only a few hours of direct instruction weekly; and
  
  
• The overall level of educator ignorance regarding special needs' populations and the IDEA, as well as a perceived lack of supports, staff, and funding for mandated, necessary, and required services and programming.

Parents indicated that the burden of obtaining services for their children and verifying the appropriate implementation of these services too often became exclusively their responsibility. This resulted in an adversarial or potentially adversarial dynamics among them, the school, and service providers. Although the obligation to identify children with disabilities and to provide them with appropriate services legally rests with State and local education agencies, in practice, parents must assume the at times daunting responsibility to ensure that their children receive appropriate services.

Some witnesses made suggestions on how to improve IEPs:

• Definite timelines should be established for achieving goals and assessing the child's progress on a regular basis.
  
  
• Streamlined IEP options should be offered for students with speech and mild learning disabilities.
  
  
• An educationally relevant assessment should be a part of the IEP process and not a separate evaluation.
  
  
• The IEP goals must address acceptable behavior and related emotional issues in order to teach students to effectively manage their own behavior.
  
  
• The IEP should provide motivation to the child and encourage achievement, not merely state what the child will accomplish.
  
  
• A well-written IEP with meaningful goals can be an exceptional tool to teach and aid a child with a disability, but such an IEP must specifically state the goals and objectives to be accomplished by the child.
  
  
• A set of criteria to make the IEP process more effective for everyone should include: (1) self-evaluation by teachers, administrators, parents, and students; (2) careful monitoring of the process toward reaching the goals; (3) reevaluation and adjustment of teaching strategies when students are not reaching their goals; (4) completion of the initial evaluation in a timely manner; and (5) use of the IEP team more extensively to discover why a students are not reaching their goals.

The IEP and Teachers

We watched their education closely. This included many school visits. On one visit to school, the oldest child's seventh grade English teacher recommended institutionalization. It was all I could do to get my wife out of the classroom...From that point on, we avoided public school, except for team meetings, or as I refer to them, "blood lettings." (Charles Packard, Boston, MA)

Aaron described the Rocky Mountain in Pennsylvania as being the best place he ever visited, where he used to go and sit and think...He wrote about the school as being the worst place he had ever visited, and he told me it was because the special ed teacher came into his class and didn't know how to teach him what he needed to know and tried to teach him what he already knew. (Karen McGinley, Boston, MA)

IEP goals are written based on what's available rather than what the child needs. (Pam Clingenpeel, Charlotte, NC)

"Appropriate" should never entail or be for the convenience of the school district. (Linda Bond, Charlotte, NC)

Many parents were concerned that their children were not receiving the services that they actually needed, but only those that were presently available. Witnesses stated their belief that needed services were not included in IEPs because teachers were hesitant to include services that were not currently provided or because too much paperwork was expected from them to prove that such supports, aids, or services were necessary for the child to obtain an appropriate education.

Teachers feel that they're unable to include a costly piece of technology in the IEPs for fear that their school districts will retaliate by potentially firing them if they request something that is not within the budget of the school district. (Cindy Berger, Anchorage, AK)

Additionally, a few teachers who testified expressed frustration in meeting the needs of their students with disabilities due to the large, diverse nature of today's classroom. Those teachers not "on the front lines" say they want to be better informed about students with disabilities and are concerned about the lack of compliance with the IEP process on the part of the "front-line teachers." Others testified that all of a student's teachers should have a copy of the IEP: This information would heighten teachers' awareness of the student's goals and abilities and would help them incorporate those goals into their respective subjects. Another witness was concerned about teacher competencies and advocated the following:

Only personnel fully qualified within nationally recognized competencies or licensure standards will be permitted to deliver educational program within their field of expertise. (Tim Wallstrom, Anchorage, AK).

IEP Implementation and Enforcement

We have set up a system that I believe creates almost a tremendous bureaucracy in terms of making sure that we comply with hundreds and hundreds of rules, but there is no rule that says that we must have any kind of real successful outcomes for these kids. So we spend all our lives making sure we cross all our "T"s and dot all our "I"s, and people don't look to see whether the kids are doing better, whether they're being more successful. (Diego Gallegos, Albuquerque, NM)

We're so concerned about following what our immediate supervisor is telling us to do, and to create a cutoff, that will satisfy, maybe, the school board, to say that we are keeping the percentage of children down from receiving special education services. As a result, we're really kind of cutting our own throats in the end, because the children and families are really the ones who are suffering, and they're not allowed to continue to make those strides that they're making. (Mary Zeremba, Albuquerque, NM)

My son is desperate for an education, and there are hundreds and perhaps thousands of children like him in Maine who are desperate for an education but who have been told that they cannot learn, that they are lazy, manipulative and unmotivated, and to quote from one of his PETs last year, that he actually prefers to sit in the classroom like a dumb imbecile and not learn. I can assure you that this is far from the case. (Rosalba Votto, Boston, MA)

Various witnesses expressed dissatisfaction with public school systems because the schools were not complying with the goals and objectives in the IEP and teachers were failing to follow through with even the simplest IEP requirements. However, participants at the hearings also made suggestions to remedy these problems:

• Harsher penalties and fines need to be stated in IDEA to notify school districts that noncompliance with IEPs will carry significant consequences.
  
  
• The language of Part B of IDEA should be strengthened regarding evaluation procedures and noncompliance issues, along with developing follow-up studies when the IEP goals for the child are established.
  
  
• With the three year reevaluation requirement, a monitoring system should be established to ensure compliance with current IEPs.
  
  
• Hold teachers and school personnel accountable for the implementation of IEPs. Establish severe penalties for teachers that fail to comply. (Debbie Stephens, Charlotte, NC)

Related Services

There are tools, right from computers down to switch operated toys down to low-tech, which allow kids to fully participate in their education...They can enable kids to get through all kinds of barriers...Failure to use these kinds of things is like denying somebody a pencil or a book, if they didn't have a disability. (Donna Dutton, Berkeley, CA)

I walked in one day and [said,] "Where's his self-feeder?...He's capable of feeding himself instead of having somebody spoon-feed him." (P.J. Carpenter, Anchorage, AK)

Parents and advocates for children with disabilities at each hearing site testified about the insufficiency of related services. Their primary concern was that when or if related services were determined to be necessary, many schools would only provide them if they were easily available. Thus, the criterion involved in the schools' decisions was not whether students needed related services as is required under the law, but whether these services were easy or inexpensive to provide.

In the absence of SEA or LEA policies on the provision of assistive technology, and the lack of Federal attention to assistive technology during SEA monitoring, it may be as difficult to assure the provision of a tape recorder or calculator as it is a closed circuit TV system. (Amy Goldman, Philadelphia, PA)

There is no adaptive equipment. [You would hear,] "Oh, oh. He is only one kid in the whole school." Well, doesn't that kid count? (Sam Reder, Anchorage, AK)

Being intelligent alone cannot get you over the hurdles that the learning disability presents. It requires other people to come in and help you with the technologies. (Mason Barney, Boston, MA)

Although parents felt confident enough to describe the services or assistive technology their children needed, they were often not successful in obtaining these because they were either unaware of their rights on this issue, believed school districts when told that the system could not afford the requested services, or felt too intimidated to confront school systems. Therefore, children did not receive appropriate services or assistive technology, received only minimal services, or received nothing at all, particularly if they were being schooled at home.

Witnesses stated that increased funding is needed to provide more services in a timely fashion and to provide more information and support to parents who are struggling to obtain appropriate services for their children.

We urge that the legislation be reauthorized with some strong mandates that schools address assistive technology needs and do it in a proactive way that provides training, that provides rights to individuals with disabilities and to parents so that, indeed, the program is individualized, not for the convenience of the system. (William West, Denver, CO)

Parents wanted better training for teachers and parents who need to be able to use assistive technology, clarification about issues of student evaluation for assistive technology, and more compatible equipment in the system to enable smoother transitions from one level to the next (e.g. being able to use the same computer system in grade school and high school so time is not wasted in adapting to new technology).

Transition of this technology from education to work, from one educational setting to another, has to be a primary emphasis of the use of adaptive technology in the education system. One form of transfer of technology that concerns me greatly is that ability not only to move from system to system, but from the 9-to-5 part of their lives to the 5-to-9 part of their lives, being able to bring that technology out of the classroom into the home, to use it in manners appropriate for personal management of their home lives, as well as to do the homework associated with education. (Brian Charleson, Boston, MA)

Because...items cannot go with him to the next school that were purchased by the previous school just for him,...we're back at the square one going, "Okay, we need this..type of equipment for him to use so he is capable of doing what he needs to do in the classroom." (P.J. Carpenter, Anchorage, AK)

We also need to teach those teachers to use technology to advance educational opportunities...to take a computer, type in the textbook, be able to translate it and print it out in braille at will. Worksheets should not be something that are read aloud or hand transcribed in these modern times...The whole concept of teaching materials...I remember when I was in school and took things like Art History, required subjects, one of the joys of that experience was trying to sit through umpty-ump slide shows with somebody trying to describe to me the difference between pointillism and cubism without one single raised-line image to learn from, trying to do it entirely from description. I'm very concerned that in the educational system, as we continue on into technology and see videos taking an ever-increasing importance in the classroom, that those be made accessible. (Brian Charleson, Boston, MA)

Last year was the first year that Chris had any consistent access to a computer, although it has been in her IEP since kindergarten and she is now in the sixth grade. (Tracy Hunter, Charlotte, NC)

With respect to deaf or hearing impaired children, parents expressed a desire to have an increased number of certified sign language interpreters. They were concerned about the quality of interpreters working in the schools. Because communication is essential to effective learning, some witnesses suggested setting national standards for interpreters. Additionally, parents stated they would like to see guidelines for language therapists incorporated into IDEA.

A number of parents and advocates made specific suggestions, including listing school health services delivered by a professional school nurse as a related service.

The law doesn't clearly state who is responsible for providing these services [related services for students with medically-related needs]...Failure to clarify this part of the law keeps individuals who choose to participate in the least restrictive environment segregated from their peers without disabilities, and loopholes for professionals who use the "medically fragile" label to keep these children out of the community and out of community schools. (Beverlyn Lee, Berkeley, CA)

There was also some consensus that services should be provided to meet the needs of students with neurobiological disorders. Certified school nurses could administer and monitor medications taken by students with neurobiological disorders, thereby creating access to the public school system. In addition, one parent requested respite care as a related service for parents like herself who are caring for a child with severe anger and attachment problems.

Other concerns included transportation problems, particularly in remote areas. Rural areas throughout the country seem to be at higher risk for being unable to provide necessary services, due at least in part to the physical geography of these areas complicated by the relatively low numbers of people with disabilities in these areas. This situation creates transportation hardships for parents when transportation is either not provided by LEAs or when students must spend extended blocks of time on busses or other district vehicles. Regardless of the law's intent, witness accounts indicate that there is no uniformity throughout the nation regarding which school districts will provide transportation, reimburse parents for providing the service, or simply refuse to offer the service. This places special education and related services outside of the physical reach of many children in need.

Other parents complained that their children have to commute long distances every day, are being picked up during class time so teachers can use the extra time to plan the day (depriving children of 40-50 minutes of the regular school day), or are being denied transportation altogether.

The Overall Benefits of Special Education

Witnesses testified that when a student does not receive appropriate and necessary services and skill training, the student will not progress or benefit from special education. While there are clearly situations in which students have benefited considerably from their involvement in special education, in far too many instances the absence of appropriate services has resulted in unsatisfactory levels of student achievement. One parent testified that upon initial evaluation, her child was reading at a first-grade level. After appropriate services were provided, her child progressed to a fifth-grade reading level within one-and-a-half years. However, most of the testimony indicated that students were not fully benefiting from special education:

Even as a 15-year-old...I knew that special ed was the plague....I didn't want to be put in a five-by-five room with a single teacher and a piano. It was like being put in jail....My consciousness vis-à-vis disability was particularly heightened at an early age, and I knew that the only way for my peers, and teachers, for that matter, to learn to deal with disability was to face disability. Being herded into that room wasn't doing me any more good than it was doing them. [I] have a lot of concerns about people with physical disabilities being herded into special ed even though they don't need to be in a special ed program. (Drew Sommers, Milwaukee, WI)

Teachers are supposed to...comply with the modifications. I've had teachers make my grades higher, because if they flunked me, we'd go back asking what kind of modifications [could be made]. For instance, just recently...I did not turn one paper in, in math, but I had turned in two tests, which were both "F"s. I still came out with a C. So, see...this is their answer to modifications, just make the grade higher. I actually want to get something out of education. I want to learn something. I don't want people just putting my grades there for me. (Michael Klucher, Albuquerque, NM)

...Receiving straight A's throughout school, I went on to college unaware that I was so unprepared, totally unprepared. Fortunately, I had the smarts and the continued support of insightful, intelligent parents, helping me through the traumatic beginning. I went to graduate school, but my high school education was far from "special." It was deficient. (Suzanne Bacal, Philadelphia, PA)

Students come out of [special education schools] with nothing that looks like a diploma. They get a certificate of attendance, a certificate of completion...None of those...is a diploma. So a kid can go from kindergarten to the end of his or her education career with nothing that looks like what every other student is to get. So they don't come [out of school] equipped....Our kids with disabilities are just like kids with able bodies [and] are supposed to get real life education while they are in school that is augmented by the community and their parents. (Greg Dougan, Philadelphia, PA)

My son is an 18-year-old person with a third-grade education. He wants to go to college. He wants to be a marine biologist. But he may never get out of high school because he hasn't been given the right skills and the right tools. [He] has been made to feel...that he is moron, that he will never catch up. (Rosalba Votto, Boston, MA)

As a Director of the Independent Living Center, we primarily serve adults with disabilities. Well, we've seen the failings of the special ed system for the past two decades. Many of our consumers who have come out of special ed don't know how to read, don't know how to write, have never been taught basic fundamental skills that are necessary in our growing work- and technology-based society. (Paul Spooner, Boston, MA)

We see the aftermath of the educational process on adults with disabilities...Statistically, many adults with disabilities do not have sufficient education to enter the competitive market, and as you know, our society is changing rapidly. (Rafaelita Bachicha, Albuquerque, NM)

When he graduated this year, he [couldn't] read or write. He was never taught the technology that could have helped him function as an adult. He entered school with an IQ of 109, graduated with an IQ of 86. I don't really believe his IQ dropped, but I believe the system failed him. (Cindy Sirois, Boston, MA)

At age 12, she left public school [with] a second-grade education. This is a horrendous, horrible use--or nonuse--of an education system. (Robin Ann Tracy, Boston, MA)

Clearly, these customers of special education were not satisfied with the results of their experiences in the system. While it is undeniable that special education has had tremendous positive impact on the quality of life experienced by those who have received appropriate education, the testimony of these witnesses indicates that many families and students are not receiving a free and appropriate education consistent with their needs as the law intends.

Alternative Placement

We were told at her IEP meeting by the special ed coordinator that we were like pioneers in the process of allowing the school to educate my daughter. I cringed and thought to myself, to me "pioneer" is synonymous with "guinea pig." (Kathleen Fitzgerald, Boston, MA)

Some parents, frustrated with the schools' reluctance or refusal to provide services to meet their children's needs, have resorted to private placement or home schooling, sometimes at their own expense. Parents and advocates testified that in far too many schools, special education students were unwelcome, were frustrated as a result of inappropriate services, or were deteriorating due to a lack of appropriate services. In spite of 20 years of experience, it is still the case that in many locations, virtually no services are provided in public school buildings for students with moderate to severe disabilities. The troubling effect of this de facto non-compliance with the law has been the assumption on the part of a whole generation of parents in these locations that their children cannot possibly be accommodated in a regular school environment. And yet, in every hearing there were parents who provided powerful examples of how individual school districts had designed and implemented high-quality services and supports for students with even the most severe disabilities in regular public school buildings. In some situations these districts literally bordered on districts that provided virtually no services to students with moderate to severe disabilities in regular schools.

It is, of course, understandable that when parents are offered no (or very limited) services for their children with disabilities in regular school environments, they will accept placements outside of the regular school system in order to access help for their children. As we will see in the chapter on "Least Restrictive Environment," tremendous barriers still exist in accessing this help in typical public school buildings. However, in many parts of the country, the most important issue is not a lack of alternative placements. Rather, it is the substantial lack of ordinary placement options.

Recommendations: Appropriate Education

In order to ensure that IDEA's provisions regarding appropriate education are improved and strengthened, the Federal government should implement the following recommendations:

1. Require State and local education agencies to offer information and training to parents regarding their participation in the special education process, particularly as this relates to active involvement in decisions regarding their child's education.
   
   
2. Over the past 20 years, the Individualized Education Program (IEP) has served many purposes. There is currently great variability in the processes used and results derived from the development of IEPs. The Department of Education should succinctly catalogue the overall purposes of IEPs and reaffirm the most basic purpose of the IEP, which is to ensure that students receiving special education are provided with a carefully tailored package of supports and services designed to maximize their educational achievements within the least restrictive environment.
   
   
3. Within the context of renewed emphasis on the basic purposes of IEPs, the Department of Education should monitor progress in improving the quality of IEPs. Such monitoring should go beyond the current infrequent and highly formal monitoring program and include new approaches such as stratified sampling of parent and student satisfaction and the solicitation of input from teachers and other professionals on how IEPs might be improved.
   
   
4. With the adoption of the recommendations above, the Department of Education should allow greater flexibility--based on informed decisions made by parents and students--on the degree of specificity required in those parts of the IEP that deal with day-to-day instruction and the delivery of related services. For example, some parents feel that there is no need for short-term objectives in their children's IEPs. Other parents would like to see a "shortened" IEP for students with relatively minor disabilities. Greater flexibility in this area would likely lead to greater levels of customer satisfaction andreduced paperwork.
   
   
5. The Department of Education should provide incentives and support for State education agencies to improve their monitoring of the performance of local education agencies, particularly in situations where State education agencies are attempting to provide sanctions for substantive noncompliance with the provisions of IDEA on the part of a local education agency.
   
   
6. The Department of Education should require State grantees under the Technology Related Assistance for Individuals with Disabilities Act to engage in more extensive outreach to school districts regarding the availability of assistive technology devices and services.
   
   
7. More funding should be available to provide necessary assistive technologies and support services that enable students with disabilities to attend school and to increase their independence.

¹ See, for example, National Council on Disability (1994). Inclusionary education for students with disabilities: Keeping the promise. Washington, DC: Author; and National Council on Disability (1993). Serving the nation's students with disabilities: Progress and prospects. Washington, DC: Author.

² See Gore, A. (1993). From red tape to results: Creating a government that works better and costs less. Washington, DC: U.S. Government Printing Office.

³ As stated earlier, the goal of the hearings was to gather information from parents, family members, and students. The NCD relied on local groups to organize the hearings, groups which employed varying levels of publicity regarding this goal. As a result, approximately 15% of the witnesses were professionals. However, the majority of these professionals were employed by parent training and disability advocacy organizations. Therefore, the vast bulk of testimony was from a customer perspective.

⁴ We have endeavored to spell witnesses' names correctly. Some were difficult to read on sign-in sheets. The court reporters at the hearings worked hard to ensure correct spelling. Still, we apologize for any errors. All quotes are verbatim, with the exception that punctuation has been added for clarity, pauses have been omitted, verb tenses have been aligned, and obvious repetitions within quotes have been condensed. Also, the location listed is the hearing location, not necessarily the actual address of the witness.