National Council on Disability
July 5, 2002

National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004

Individuals with Disabilities Education Act Reauthorization:
Where Do We Really Stand?

This report is also available in alternative formats and on NCD's award-winning Web site (www.ncd.gov).

Publication date: July 5, 2002
202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax

The views contained in the report do not necessarily represent those of the Administration as this and all NCD documents are not subject to the A-19 Executive Branch review process.

National Council on Disability Members and Staff

Members
Marca Bristo, Chairperson
Kate Pew Wolters, First Vice Chairperson
Hughey Walker, Second Vice Chairperson
Yerker Andersson, Ph.D.
Dave N. Brown
John D. Kemp
Audrey McCrimon
Gina McDonald
Bonnie O'Day, Ph.D.
Lilliam Rangel-Diaz
Debra Robinson
Ela Yazzie-King

Staff
Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Allan W. Holland, Chief Financial Officer
Martin Gould, Ed.D., Director of Research
Gerrie Drake Hawkins, Ph.D., Program Specialist
Pamela O'Leary, Interpreter
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk
Joan M. Durocher, Esq., Fellow

Acknowledgment

The National Council on Disability wishes to express its appreciation to Celane McWhorter, NCD consultant, for her help in drafting this document.

"The Americans with Disabilities Act and the Individuals with Disabilities Education Act are cornerstones of the empowerment culture. They empower all Americans to participate, to produce. ADA and IDEA and other disability rights laws must not be weakened. They must be vigorously implemented."

--Justin Dart
   National Council on Disability
   National Summit on Disability Policy
   April 27, 1996
   Achieving Independence

Contents

Introduction

Summary Statement

Monitoring and Enforcement
Funding
Discipline
Overrepresentation

NCD Recommendations for IDEA Reauthorization

Part 1: Where Do We Really Stand? Youth Speak Out

Part 2: Where Do We Really Stand? From the Public

    Issue 1: Monitoring and Enforcement
    Issue 2. Funding
    Issue 3. Discipline
    Issue 4. Eligibility and Overrepresentation of Ethnic, Cultural and Racial Minorities
        in Special Education
    General Public Recommendations

List of Commenters

Appendix
    Mission of the National Council on Disability

Introduction

The National Council on Disability (NCD) is an independent federal agency making recommendations to the President and Congress on issues affecting 54 million Americans with disabilities. NCD is composed of 15 members appointed by the President and confirmed by the U.S. Senate. NCD's overall purpose is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability; and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society. NCD makes recommendations to the President, Congress, and federal agency officials concerning ways to better promote equal opportunity for all individuals with disabilities. In addition to our statutory mandates, NCD's mission is to provide a voice in the Federal Government and to Congress for all people with disabilities in the development of policies and delivery of programs that affect their lives.

In keeping with that mission, on February 11, 2002, NCD published a working document on the reauthorization of the Individuals with Disabilities Education Act. The paper, IDEA Reauthorization: A Working Paper, identified four areas that NCD determined to be particularly critical to the implementation of IDEA: eligibility and over representation of racial and ethnic minorities; funding of IDEA; monitoring and enforcement; and discipline. NCD poses a number of questions for each of these areas. The selection of these four areas and the accompanying questions were based on the review of eleven years of NCD publications on the implementation of the Act and barriers to full implementation buried within policy and practice relative to each.

We then set out to find answers. In preparing this paper, NCD reviewed public proceedings over the past two years, including hearings held by the White House Commission on Excellence in Special Education, Committees and Subcommittees in the House of Representatives and Senate, and the U.S. Commission on Civil Rights, along with publications from the National Academy of Science, the Harvard Civil Rights Law Project, and the General Accounting Office. NCD invited the public to respond to the questions in a public comment period announced in the Federal Register on April 3, 2002. And, finally, we invited the real consumers, youth with disabilities, through the NCD Youth Advisory Council to tell us about their experiences in special education.

Where Do We Really Stand? is a compilation of the public statements--excerpts that are particularly relevant to the NCD issues and provide guidance in answering the questions. It begins with the youth comments, because that is where we should begin in any discussion of special education . . . what can they tell us about their experiences with IDEA?

A few disclaimers are necessary. Public comments are organized around the 21 questions found in the four critical areas. Thousands of pages of print were reviewed in search of recommendations relevant to the NCD questions. The paper excerpts statements from students, parents, advocates, school administrators, teachers, university personnel, and others. Most of the statements have been shortened; the substance has been honored although words may have been rearranged to more readily fit into the document. The intent was to survey what the public has been telling the Federal Government about IDEA, about what changes are necessary after twenty-seven years, and about provisions that are "sacred." While many of these statements are scientifically based, this is not to be considered more than a compilation and analysis of excerpts of individual statements expressed in a number of public venues. Some of the contributors' last names have been omitted to protect their anonymity.

Two things are obvious in the survey of the public opinion. First, it is clear from the volumes of work that IDEA has a wide following in this country. Second, there is controversy among the followers--a deep chasm of opinion on a number of issues particularly relevant to the quality of educational outcomes for students with disabilities. From the students, we hear the reality of their lives in special education. In most cases, the comments we received from them are a scathing indictment of the implementation of IDEA.

NCD has attempted to capture the trends found in the material, summarize what we found, and recommend solutions based on a combination of our work since 1991 and statements that particularly resonated with the members of NCD. We hope that others will be able to use this document to do the same. A list of individuals referenced in this document is found in the Appendix. The document is certainly not all-inclusive of public comments made during the past two years, but we believe it is very representative of the messages delivered.

Finally, more public statements are being made every day as the President's Commission Report is being released and Congress is making plans for rapid action on the reauthorization. We will update the web version of this document, to ensure that it truly reflects public opinion. We hope that Where Do We Really Stand? will be useful to a broad audience of groups and individuals who are working on behalf of students with disabilities and their families to strengthen the implementation of the IDEA.

Summary Statement

Based on its review of Congressional hearings and briefing records, as well as Presidential Commission transcripts, and IDEA research reports published by various Federal Government entities, NCD identifies a number of common themes.

Monitoring and Enforcement--There is clear agreement that significant weaknesses are present in the current systems of monitoring and enforcement. A large number of comments addressed the need for change to a less bulky, more timely system focused on solid outcomes for students and more classroom time for teachers. It is important to note that there were no calls to eliminate federal monitoring, rather to improve it. Three themes for solutions emerge in public opinion: 1) Professionals say there is too much needless paperwork leaving too little teaching time. This claim is not supported by parents who believe process is important for implementation; 2) The question of responsibility for the paperwork requirements--federal or state bureaucracy--gives rise to the suggestion that clearer and more concise instructions are needed for States to assist them in limiting paperwork to essential information; and 3) More emphasis should be placed on meaningful monitoring activities leading to improvements in student outcomes. These issues frame a lively public debate over how much paperwork, monitoring, and/or enforcement is necessary for implementation of the IDEA and what level should be responsible for them.

The new Departmental initiative for monitoring--Continuous Improvement Monitoring--has been well received. The next "generation" of improvements is the still evolving Focused Monitoring, which is designed to collect data focused on specific identified problems and solutions. Inhibitors in the current system were identified as: insufficient enforcement; too much paperwork; too much bureaucracy; inconsistency in federal follow-through and slow turnaround time; long term patterns of noncompliance; too much procedure/not enough substance at the state and federal level; big sweep--no targets to identify and fix the real problems. All stakeholders, including parents, should be included in the monitoring system. A lingering question about the paperwork requirements begs for an answer: "Is the origin of too much paperwork federal requirements or state regulations?" There was a strong cry for simplicity and consistency across states in data collection and the IEP process, with many recommendations for standardized data collection and IEP formats. The IEP must be a tool for instruction and assessment rather than paper chase, and data must be useful to states for improvement. Systems of accountability must include assessment and unified reporting for all students, including students with disabilities. Alternate assessments and individualized accommodations must be available for students who need them.

Funding--What, if any, changes should be considered in federal special education funding formulas? Integrated funding, which is the utilization of IDEA funds in general education classrooms, has been a highly controversial and divisive issue for years, with advocates for student rights strongly opposing earmarking any IDEA money for use outside of special education. It was clear that administrators strongly favor such changes in IDEA while the parents do not. A myriad of other recommendations also surfaced--weighted or differential payments based on severity of the disability; elimination of funding supporting segregation; examination of costs vs. expenditures as the funding formula base; creation of federal safety nets for cost overruns; addition of more administrative allowances; coordination of funding with other federal programs with IDEA responsibilities; reduction of state maintenance of effort requirements; creation of a state match; creation of a cap on Part B expenditures and attorneys fees; and elimination of disability categories. Part D appropriations are insufficient to address infrastructure needs. Increases are needed for the discretionary programs, and there is a strong voice for indexing increases in Part D to increases in Part B.

Discipline--While the advocacy community has held fast to the discipline amendments of 1997 as the right and equitable answer to the thorny question of disciplinary treatment of students with disabilities. There appears a strong body of evidence in the public statements that the current system is too confusing. Some teachers and administrator's advocate for a unified system of discipline for all students. Others are adamant that the policy must only be "clarified and simplified." Most seem to believe the core principals of the disciplinary policy are important and recommend holding firm to the protections for students so carefully crafted in 1997. There was a recurring theme recommending equity for students and teachers and strong educational programs for students with discipline problems. Few brought to the table discussions about current implementation of the discipline requirements in the Act. It is not clear if this is because there are few instances of proper implementation, or if other issues were considered more important.

Overrepresentation--Recommended solutions to overrepresentation tended to cluster around a number of themes, the most prevalent being the need for strong early intervention programs for identification and prevention of special education placement. Likewise, interventions in general education, with proper testing, rigorous eligibility criteria, assessments, materials, and high quality instruction. These lead to blended funding streams, which is addressed again in the funding section, although this solution is not universally supported. For successful early intervention and general education prevention the shortage of teaching staff is identified as a major issue and targeted for changes through professional development, parent training and support. Finally, appropriate data collection and manipulation is important, with the issue of disaggregation for race and gender appearing several times. Witnesses identified a number of family centered services as important to overcome overrepresentation: strong prenatal and other health care services, coordinated family services; and, culturally appropriate technical assistance to schools. One individual recommended cultural competencies for state certification requirements and culturally sensitive diagnostics. There was a strong emphasis on the need for training, especially increased training in behavior management; culturally sensitive training for both special and general education teachers; pre-service and in-service training; training in culturally sensitive diagnostics and parent training; and a National Advisory Panel to develop partnerships between universities and the community to strengthen in-service training. Especially important to note is the statement about the importance of strong personnel preparation programs for university trainers due to a serious shortage of special education expertise at the university level. And finally, increased funding is important to secure the recommended services. Quality research. It is similarly important to remove financial incentives for higher numbers of special education placements. The importance of data is a constant theme throughout and it certainly was highlighted here as an important issue.

National Council on Disability Recommendations for Reauthorization of IDEA

This document has revealed many recommended changes to IDEA. Some of the recommendations resonate clearly with NCD, others we believe would threaten the rights of students with disabilities if they were to become law. Based on the review of testimonies and other public statements, along with the other NCD work on IDEA policy and implementation, including our Back to School Report, NCD makes recommendations for the reauthorization of the Individuals with Disabilities Education Act. As previously outlined, NCD's focus has been on the four areas of monitoring and enforcement, funding, discipline and overrepresentation. Our recommendations are for improvements in these areas as well.

1. Enforcement--NCD heard and agrees that the focus of special education should be on outcomes. However, we are very worried about the number of times administrators and teachers recommended overhauls that could endanger the very core principles of IDEA: FAPE, least restrictive environment, IEP and due process protections. With so much importance placed on student testing and accountability based on the results of testing, students with challenging disabilities could well be relegated to separate settings due to their inability to perform. It was to protect students with disabilities from this type of discrimination that these principles were included in the Act. It is more important than ever that paperwork and process be in place to ensure that the civil rights of each student with a disability are adhered to. These issues frame a lively public debate over how much paperwork is necessary for implementation of the IDEA and how much of the current barrage of paperwork is "overkill" from state regulations? NCD believes that much of the procedural pressure is created at the state rather than the federal level. To ensure that states are not creating regulations that challenge teaching time, NCD recommends that the Act include instructions to the Department of Education to more carefully review state regulations, and provide instructions and technical assistance in instances where the state rules include unnecessary paperwork requirements or regulations to ensure implementation requirements that adhere to the law without creating unnecessary paperwork.

2. Enforcement--The Department of Education should not be the sole enforcement agency. The Department has long-standing and collaborative relationships with state education administrators. This is an important relationship that is jeopardized when the Department threatens sanctions. Partial solutions were included in the last reauthorization when enforcement authority was also given to DOJ, but only following referral of cases from the Department of Education. This has not worked for there have been no referrals to DOJ since that authority was added to the Act. NCD recommends an expansive role for DOJ. Congress should authorize and fund the Department of Justice to independently investigate and litigate IDEA cases, as well as administer a federal system for handling pattern and practice complaints filed by individuals. NCD also recommends adequate funding for the Department of Justice and the Department of Education enforcement, complaint-handling, and technical assistance infrastructures, enabling the federal agencies to support improvements in state compliance and ensure better outcomes for children

3. Standards--The lack of national compliance standards is at the root of the enforcement problems. NCD recommends that the Departments of Education and Justice be directed to develop national compliance standards, improvement measures, and enforcement sanctions that will be triggered by specific indicators and measures indicating a state's failure to ensure implementation of the law. Stakeholders, including students with disabilities and parents, should be consulted by the Departments for consistency and clarity as they develop and implement a range of enforcement requirements.

4. Technical Assistance Networks--To further strengthen the monitoring and enforcement activities, NCD recognizes the need for the development of state-level technical assistance networks, self-advocacy and monitoring training for students and parents and other partners, as well as free and low-cost legal services for families. To fund these Department of Education-sponsored technical assistance programs activities, we recommend IDEA include a formula that triggers additional funding equal to 10 percent of every IDEA, Part B increase. The Department of Education should ensure that this capacity building occurs across-the-board at state and local school district levels as well, to strengthen all accountability connections.

5. Accountability--Systems of accountability must include assessment and unified reporting for all students, including students with disabilities. Alternate assessments and individualized accommodations must be available for students who need them. NCD recommends the reauthorization of IDEA mandate reporting for all students with disabilities in the state accountability reports and that the IEP be required to address the need for alternate assessments and individualized accommodations. Schools should be carefully monitored on this issue to ensure that students are not being moved to alternative schools to "protect" the school from lowered scores on the school-wide tests.

6. Funding--NCD joins the voices of concern from individuals with disabilities, their families, and their advocates across the country about inadequate funding for special education. NCD recommends Congress adopt mandatory funding in keeping with the original commitment from the Federal Government to fund 40 percent of the per pupil cost of special education. In this regard, NCD also recommends Congress tie full funding of IDEA to full enforcement of IDEA, specifically, the implementation of the recommendations listed above.

7. Discipline--The discipline amendments of 1997 are the right and equitable answer to the thorny question of disciplinary treatment of students with disabilities. However, there is a strong body of evidence that the current system is too confusing. NCD recommends that the current discipline requirements be carefully examined and simplified where possible, without eliminating any protections for students with disabilities. No cessation must remain an absolute requirement in the law.

8. Overrepresentation of Diverse Populations in Special Education--NCD echoes the multiple concerns expressed over the past few years about the serious problems caused students from diverse backgrounds who are wrongly placed in special education. We do not agree that using IDEA funds to pay for prevention in general education is the solution. Funding authorized in the Individuals with Disabilities Education Act must remain money set-aside exclusively for students with disabilities who are determined in need of special education services. It must not be blended with general education funds for any purposes. NCD believes there are sufficient funds through Title I and other programs to general support for prevention strategies for "at risk" students in the general education classroom setting. NCD strongly supports recommendations that the overrepresentation issue be tackled head on with early intervention and prevention services in the early years and into general education, funded through Title I and other so designated funds. Additionally, faithful adherence to the law for students determined eligible for services would fix these problems, providing FAPE, LRE, supports and all the other promises of the law.

9. Culturally Appropriate Training Materials--NCD recommends that the law support the Office of Special Education and Rehabilitative Services in the Department of Education to expand its initiatives to serve non-English speaking groups and/or people with limited English proficiency and create culturally appropriate training materials.

Part I: Where Do We Really Stand? Youth Speak Out

On May 16, 2002, NCD asked youth about their experience with IDEA. They were asked to respond to several questions. Some did so, others responded with a description of their personal experiences, current or past, with the implementation of IDEA. In some cases, the response is from the parent rather than the youth. While we wanted this section to focus exclusively on first hand student experiences, we chose to include the parental experiences we receive to this request, for their responses also bring home the problems that must be addressed in this reauthorization of the Act.

It is important to note that the questions asked of the students were different than those found in the rest of this document.

1. When you think about your years in school, what comes to mind about special education and related services?

2. If your school was reluctant to provide special education services because of financial concerns, which services were disputed? Did you receive the services that your IEP team said you needed?

3. If the discipline procedures under IDEA need to be clearer, how would you change the way the discipline policy is explained to students and their parents?

4. How important were specific factors such as cultural, ethnic, social or language background in your being placed in special education?

5. How could schools do a better job before students leave high school to help you and other young people with disabilities prepare in areas such as: Employment, Transportation, Housing, Managing my finances, Health care, Independent living, Connecting to resources in my community, and/or Postsecondary (college or vocational) education?

As we go to press with Where Do We Really Stand? NCD is still receiving responses to our "Youth" questions. The document will be updated on the NCD Web page to include the additional responses. As with the rest of this document, the comments are edited for brevity purposes only, preserving the presentation style and substance.

Adam, Former Student--Illinois
I have been out of school for 2 years and my years in school were a nightmare for my family and me. I ended up not graduating because in November of my last year in school I was in a bad traffic accident and in the hospital for three months. During that time my school dropped me from the roles because I was "truant" (even though they knew where I was). By the time I could go back to school (I was on life support for two months) my family and I decided I did not have enough time left to get the credits I needed. One of the biggest problems faced was that the school had problems with me having a lot of health problems, which forced me to miss a lot of school. When I was a senior they insisted my mom send me for exams even though I had a very high fever. She did and I went to sleep during the exams and was in the hospital for a month with pneumonia. I was never a discipline problem and the supports I needed were fairly minor but the school constantly fought my mom on everything.... I hated school and did not care if I graduated or not. On the transition end, the only choice I was given as a work opportunity was washing dishes in a fast food place.

Liz, Parent
How disappointing it is to have to go out of district because your school district either cannot or won't provide services to your child. This is esp. true for students who have low-incidence disabilities or behavior issues. How inclusion may not be the answer, because the reg. ed. teachers do not know how to deal with kids with disabilities, as they don't feel like they are qualified. What is frustrating, is when a child is sent out of district or to a special school, while still in a preschool program and then years later, written on the IEP forms is how the child would best be placed in that type of program because they can't handle being in a reg. program and a reg. program has never been tried with that child. . . . The district was reluctant to provide services due to the nature of the disability, so the child was sent to a different district and then to a specialized school. Unable to provide educational services, behavioral services for a child with vision impairments and ADHD, after many years of problems with behavior, and a year of requesting a behavior management plan. . . . [The clarity of the discipline procedures] Seems to be okay. . . . Need to focus more on helping the students, esp. those with multiple disabilities, access transportation, assist student and/or parent how to go about accessing employment, what's available for students with multiple disabilities, could become acquainted with resources and criteria needed to get services. Also finding out about funding sources has been difficult. As we're told by the schools that ALL these different programs are available, and then the parents get their hopes up, only to find out that funding isn't available or that the student doesn't meet the criteria.

Jessica, Former Student, Utah
When I think of my school years and the special education law I get frustrated because my school was anything but cooperative. There were many teachers who didn't think I should have been considered for that, and were unwilling to make adjustments to my workload and how I was graded. They wouldn't work with my homebound teacher either. I didn't really have much of anything about the special education law explained to me, which made trying to get it to work for me harder because we didn't know what to do. I think many of my teachers thought I was faking being sick and really resented me for when they would get a slap on the wrist for not following the law. The administration and the school board didn't really do much to make sure the teachers were doing what they were required to do so then the teachers in a way really felt they could get away with treating me and my family like idiots without worrying about repercussions. Things got so bad and stressful that I was getting sicker so I left the public school system all together and graduated through a correspondence school. I'm okay with the choice I made, but I still have feelings of resentment towards those who were supposed to be on my side and help me because my situation was so different from other students. I really felt betrayed by my school district and I don't want others to have to go through with that. I really think that there needs to be closer monitoring of schools and what they are doing about the students who are relying on the special education law. If the teachers can get away with disregarding the law time and time again they aren't going to stop and many others are going to feel stuck like I did and look for different ways to get the education they deserve and need. I think there needs to be a greater understanding of what this law will do for a student, and someone to make sure that the parents and the student fully understand everything about this law so that when the school is ignoring the fact that it is a law they will know what they can do about it

Isaac, Former Student
As to my feeling about special education, I didn't feel as if it was necessary, because I didn't lose my sight until I was 13, and I was main stream up to that point, and didn't feel as if I had to slow down in order to grasp what was going on in school. I was able to get through high school and college with being mainstream and without family support and the desire to learn, I don't know if I would have been able to. My idea of special education was that it was for people who wanted to learn but never had the support to do so, I always felt I had the support to handle mainstream and always was willing to do anything to learn. . . . I didn't really know what was actually available to me in high school. I take the responsibility for that, because as a disabled person, I feel I should know what is available to me, in order to ensure that I get where I want to go. The things my school were usually hesitant about was providing the support within the classroom through tutors, or through waiver forms in dealing with what they considered being dangerous classes. (chemistry etc.) . . . The discipline policy of IDEA, would only be clearer, if all parents and students who are disabled know about it in the first place. The language of IDEA is usually full of jargon and words that are difficult to understand. . . . So to be broken down into smaller parts should make it easier to pass on to students. . . . I wasn't ever placed in special education, because my family always felt I was able to handle mainstream. So I would say my background allowed me to step up and reach the potential of what I have. . . . I would say that the way to make sure students learn further in this area, would be to see if the students have interest from the beginning of their schooling. Show the benefits of all avenues, and make sure that the students understand that the above things would only help to further them as a person.

Whitney, Student, New Jersey
The Individuals with Disabilities Education Act allows for very inconsistent application of the statute to everyday student life. Local administrators have great latitude and/or discretion in providing or denying needed services. While the child study team at my high school is exceptional, there have been incidences when non-special education school administrators appear to have simply ignored the provisions of my IEP.

Carla, Parent, Illinois
I have a son who is 16, at 4 months of age he was in an auto accident . . . in 1992 the grand mal seizures started, so a regimen of meds, neurologists and tests were started, the EEGs showed that all the abnormal activities were in the areas he received the skull fractures. But even with documentation or any info about traumatic brain injury, its like the school doesn't really care what is going on in my son's brain. For a long time they didn't even have TBI listed they had him in a class that was for emotional disturbed children and ultimately that led to a BD classroom, because he was exhibiting behaviors that the class couldn't or wouldn't accept. I keep trying to tell them they have to stop focusing so much on the behaviors, because if they can, they will see a change. But its like they continue to push him or myself to adapt to their way of thinking and they don't even care about the frontal skull fracture and what it does to behaviors. When I went to the IEP meeting hoping to meet the teacher I talked to on the phone but of course she wasn't there. . . .They could all reassure me that these teachers were the best. Then why do I feel so bad inside, I just hate having to send my son to this school. I did find one thing that got them to thinking, I said I wonder what you all will do if the Corey H law is passed, and they said that if I wanted a good IEP in August I better not mention Corey H. . . . I am a nurse if I treated my patients this way I wouldn't have a license or if a doctor didn't treat my son right he could be in trouble also and also as a parent if I didn't see that my son's needs were met I would be in trouble.

No Name Given, Former Student
I was not in special ed beyond preschool. My mother worked in special ed. I volunteered in spec. ed classrooms. Related services, I think of teachers and school administration constantly trying to put me in special ed classes, especially in physical education. None of the schools seemed to know what to do for me in physical education. I was not allowed to be exempt from it and take another class in its place, yet I was not physically capable enough to have everything regular gym class slightly modified. But I was not low function enough (physically or mentally) for special ed and adaptive p.e. It ended up being I was placed in adaptive P.E. as a peer helper. . . .My schools kept trying to put me in special ed classes, remedial, and resource classes. I did require assistive and adaptive equipment such as a laptop, special pad locks as opposed to combination locks, etc. the laptop was the most difficult to have provided. One middle school never even gave it to me. They used my funding to help buy new football jerseys and kept telling me they didn't have a laptop available for me to use. . . . For regular ed students with disabilities no services or preparation is given to us in anything but postsecondary education. And even that stuff I had to find out on my own. School counselors need to do a better job in working with students with disabilities prepare. Students are not aware at the time what to expect. Employment, post secondary preparation, transportation, healthcare and managing finances, and independent living are important, and I listed them in the order of importance. Community resources are as well, but that is something that social workers, and case managers can help with. The other things need to be started by the beginning of the second year in high school. My current biggest problems in being a college student are struggling with employment, post secondary plans, and transportation. Another thing that needs to be addressed for students of all disabilities is health/sex education.

Mary, Student
I am a 12-year-old who has been diagnosed with Chronic Fatigue Syndrome (CFS) and Postural Orthostatic Tachycardia Syndrome (POTS). I am currently finishing the 6th grade and have been ill with these illnesses for most of my life. By the 3rd grade I was unable to attend school at all and my parents worked with the school to have me classified as Other Health Impaired so that I could receive services under the IDEA. The problem that they had initially was that my test scores showed that I was at the high end of my ability, even though my education was being severely affected by the illness. . . . In my consideration for services academic achievement was the sole criteria used in the evaluation for determining my eligibility for services. It was our understanding that all of the factors must be considered equally. Looking at our CFS specialist's evaluation, at my physical development, and at my management needs there seemed to be other criteria that lent itself to identifying me as a child with an "other health impairment" that was adversely affecting my educational performance. Eventually we were successful and I have had an IEP for the past 3 years that has offered me much help in completing my educational requirements each year. . . . I have a home tutor provided by the school who meets with me for 8 hours a week. I am expected to complete the 4 main subject areas. Most of my teachers have been willing to offer help in modifying and consolidating the workload to a manageable level for me to complete. I heavily rely on the word processor for writing, and on having a scribe when needed to write answers for me as I dictate them. A calculator is a service I am allowed though I try to only use it when I really need to. I have extended time on tests and often do essays orally on a tape recorder. The school has provided me with an extra set of textbooks to keep at home as well as a set and teacher's manuals for my tutor. My teachers work with the Special Ed. Consultant and tutor to turn units of study into packets and projects which prove much more manageable for me to do. I only have 3-4 hours of activity a day where I can function, so my lessons need to really be consolidated to get the most out of every hour I have. . . . I have been very fortunate in my school system because once my eligibility was accepted the CSE has been very supportive. They have been very open to our suggestions and those of the tutor to services that may benefit me, and have stuck by my IEP in following through with services. My parents have had to maintain an active role and remind the school of things we needed, such as extra textbooks, or use of a word processor, but the school has accommodated when reminded. Individual teachers have been our greatest allies and our worst enemies. If they try to understand my illness and limitations they bend over backwards to help me out. But some teachers have been totally unwilling to teach me via a tutor. They will not grade my work and resist modifying my workload. We have been fortunate to be able to find ways to work around these situations.

Jo Ann, Parent, California
The questions are too wordy/complex for my son, so I will answer on his behalf. He is an 18 yr. old high school junior with learning disabilities, namely dyslexia (central auditory processing disorder), inattentive ADD, rote/sequential/working memory deficits, poor executive function/organization/time management problems and dysgraphia. The adversarial, seek to delete, system in California nearly destroyed my son. He was diagnosed in 1st grade and spent K-5 in private school w/learning center to address his challenges. Unfortunately, we naively decided to move to neighborhood public middle school. Son was placed in gifted class with resource support (IEP). He put in a valiant effort, 2-3 hrs. of homework every night, but ultimately failed or received D's in core subjects. Parents placed him in a different private school for 7^th grade-specializing in LD (on our own--only initial IEP meeting ever held during 6th grade). Made great leaps to catch up to grade level thanks to private school. For 8th grade son begged to return to community. Parents forced (district policy which was never shown) to relinquish (voluntarily exit) son from special ed as condition of obtaining in interdistrict transfer to popular program for challenged learners across town. . . . To implement Section 504 in high school--school district conducted 5 lengthy IEP meetings, 3 mediation conferences, filed due process (intimidation tactic against parents), and performed 8 assessments (to counter 3 outstanding/state expert private assessments parents willingly arranged and paid for). Son missed nearly a month of class days due to assessments and begin called out of class for useless sessions with school psyche intern, fell hopelessly behind, despondent/depressed (first ever experience in his lifetime with rejection/hopelessness/confusion related mostly to excessive evaluations and lost school days). Son started acting out and eventually broke his hand (rage) and left home for 3 weeks. He felt he was a total loser, a disappointment to everyone. . . . In spite of years of evidence of special ed, expert reports, the IEP's were monopolized by a callous, belligerent "Director of Student Services."

Rosemary re. David, graduating with a regular diploma at age nineteen after 10 years
I never really understood anything in the IEP meetings. . . . Use simple terminologies

Rosemary, re Carlos, 17 year old, EH with auditory processing difficulty in 10^th grade.
I don't know what services I was supposed to get.

No Name Given, Parent
I am responding re: my 6th grade child who has been in special education since the beginning of second grade: The first thing that comes to mind is that the school was not very forthcoming re: my child's issues. We were not given the testing reports until the IEP and the school never explained that we could have received them before then. It would appear that the district simply tells you the minimum if you will. We would constantly ( and we still do ) hear that your child is fine. But outside testing and her work product suggest otherwise. . . . District is reluctant to provide services that they have not done so before. Sort of like it is their practice not to so therefore they do not have to. They did not always provide services we felt were necessary and we found that we had to pay for them ourselves to either provide our child with what was necessary either because the district would not provide it or because the services offered were inadequate.

Student, prepared by Alison.
I am 6. I was kept in a resource room while my entire kindergarten at my school graduated on Thursday, May 23, 2002. I have been told by my teacher that she is tired of me. I want to be in the real classroom, and my parents have worked hard to get me there 80 percent of the day. Unfortunately that doesn't mean people will help me and be fair to me in that "real classroom." I get very upset when they put me in the resource room where everybody seems to be having problems. I need to be with strong kids that can help me learn. I am a boy with autism. My mother took the time to teach me to read when I was four, and she just taught me addition and subtraction. My school doesn't seem to know how to teach me. They are really good at making me upset and making me feel sad, and bad about myself. I don't know why they discriminate against me. I am different, but so are many people in the United States of America. Being different is hard when your difference is a disability. I need better laws to protect me from people who want to discriminate and segregate. They fill the three school systems I have already attended. I'm sure they fill the country. Please protect me and my rights. I am very bright and I want to go to school, with the needed help, amongst strong children. They can help me. My parents will never forget that the elementary school not only put me in a resource room during my kindergarten graduation, but they also didn't inform my parents of the celebration. This is a heart wrenching discriminatory act against my parents, because they advocate so hard for me to have the proper help in the proper environment. I hope the new laws will protect all children and parents from having such events occur.

Erin, Student
I've had Type One Diabetes for nearly four years now and Chronic Fatigue Syndrome for nearly a year also. I've had constant battles with my school district over absences related to illness and policies related to testing my blood sugar in the classroom. Currently it is against district policy to do so, so I must go to the nurse's office every time I need to. It is EXTREMELY inconvenient and disruptive to my education as well as other's, as some days I have to leave often. I am not in special education, but I am under an accommodations plan. . . . I don't think the discipline procedures need to be clearer. I think more accommodations need to be provided for Diabetics, however. . . . I think there should be more mandatory classes on matters such as personal finances, college prep, career sampling, etc.

Ken, Parent
Our experience with IDEA has been horrible because of what appears to be "playing stupid" by the school board. First, because CFIDS, MCS and Hughes Syndrome were NOT explicitly named under "Health Other"--we were told that we did not qualify because we do not have one of the illness that this applies to. . . . Second, absolute refusal of the school district to do any neurological testing--although all three conditions are know to have severe cognitive problems (like 99+ percent of the time according to the literature). They claim that we have seen no evidence of problems and the literature is irrelevant, "After all, the child is **still being passed** despite the poor attendance--you should be thankful for that "... They have even stated that state law prevents them from doing an IEP while attendance is an issue.... despite being presented with literature that home-based schooling is typical for this illness, they are maintaining an attitude that "we will address these issues, if they exist, once she is in regular full time attendance at school and recovered from the illness". . . . Third, the school district developed a "temporary IEP" that address only one or two minor and trivial items, and said that the other issues will be addressed once we received adequate independent consultations... and after four IME (and requests for more), they still maintain that they do not have enough information so are refusing to address other issues. NONE of the physicians used for IME had any clinical experience with any of her conditions. Four, Office of Civil Rights was ignorant of these complex medical conditions and accepted the school excuse that they needed more IMEs. OCR also accepted no IEP being developed for home-based schooling AFTER almost 250 days of absences in two years was missed. The "temporary" IEP does not address home-based schooling at all, yet the OCR deems it to be acceptable that no IEP for home-based schooling exists despite physician's written order to keep our child at home. This Junior High student is only receiving instruction in Math, Reading and Writing and this is by the whim of the district administrators with no consultation with the parents or the child's teachers. . . . Five, the state "Home Hospital" rules are misapplied, and they claim that is all that they can do... these rules are for temporary illnesses and accidents and not chronic--the onus must be put on the school to develop an IEP after 10 school days of absence (same time criteria as for students suspended for disciplinary issues)--unless there is a physician's statement that it is temporary and not a chronic condition (both conditions should be required). i.e. A "Brad-lee Bill?" for the schools. . . . Six, although we requested our student records before IEP meeting only part were delivered AFTER the meeting. All meetings should have a section where the parent must indicate that they have fully received access to all of the records and adequate time to review it. OCR (Seattle) did not deem this failure to be of any significance! If the parent refuses to sign this acknowledgment, things must go to due process immediately to get these record issues resolved promptly. Our FERPA complaint about STILL not having access to the complete records is still unanswered (although it was sent certified).

The IDEA law can be made much better by adding to the "Other Illnesses"

Allison, Student, 18 years old
I have had CFIDS since the age of 15. I have been completely homebound through the entire illness. My school system was not supportive nor accommodating to my circumstances. I had to self teach myself high school. The school system would NOT provide me with a skilled homebound instructor in the subject areas I needed. I was forced to teach myself subjects that are not intended to be self instructed. I am pleased that I was able to graduate with my class this month, but it was of no thanks to the school. They knew nothing about CFIDS. We took out a 504 plan before my senior year. My parents still had to stay on them all the time. Frankly we could have sued them for neglect and not abiding by my 504 but we are not confrontational people. I am lucky that I have always been a strong student and was able to carry out the huge task they put on me. Thank you so much for letting me share my experiences. I hope that this will help others in the future.

Jennifer, Student, 16 years old, Ohio
Well first off I have Fibromyalgia and I have had it for a little more than 2 years now... when I first was diagnosed with Fibromyalgia I was in 8th grade... it was very very hard to get up in the morning and go to school... I felt horrible every day and As soon as I got home I would sleep... Well summer came and then the start of high school... I went from Aug-Jan and then I had to be admitted into the hospital and ever since then I haven't been back to school... Right now I am on a program called homebound where they send a tutor and my work home, it is actually very nice. When I was in school this year it was very unhealthy I would have to get up at 5:30 and be at school all day... I would come home eat and sleep until 9:00 get up do my homework and then back to sleep... it was no fun at all... Being in pain all the time is not fun and when you through school into it... its just 50 times worse...

Mary, Parent, Illinois
When I think about my daughter's years in school, I immediately think about a waste of her time it has been. The biggest mistake I have ever made is to listen to and rely on the so-called experts in public schools. Her education has not been special in any way, and it has been markedly inferior to her siblings. . . . Although our school district would never be so stupid as to come out and admit that they did not have money for services, they denied services, financial concerns are always at the bottom of any decision made concerning special education. Services recommended by our IEP team were regularly denied. . . . Specific factors such as cultural, ethnic, social or language background are definitely major factors in special education. This includes students who are nonverbal and who must rely on augmentative communication. Kids in special are minorities and their civil rights are shamefully violated on a regular basis. . . . If OSEP and ISBE were forced to comply with existing laws, a better job would result in young people with disabilities being prepared in areas such as: Employment, Transportation, Housing, Managing my finances, Health care, Independent living, Connecting to resources in the community, and/or Postsecondary (college or vocational) education. Right now, it is up to the resources of the parents to enforce the laws resulting in great burdens to all members of the family.

Part II: Where Do We Really Stand? From the Public

Issue 1. Monitoring and Enforcement

How disappointing it is to have to go out of district because your school district either cannot or won't provide services to your child. Liz Miller, Parent

I am a nurse if I treated my patients this way I wouldn't have a license or if a doctor didn't treat my son right he could be in trouble also and also as a parent if I didn't see that my son's needs were met I would be in trouble. Carla Sullivan, Parent. The school system would NOT provide me with a skilled homebound instructor in the subject areas I needed. I was forced to teach myself subjects that are not intended to be self-instructed. Allison, Student.

On February 7, 2002, NCD issued a document entitled IDEA Reauthorization: A Working Paper. In an effort to seek answers to key questions, NCD asked stakeholders to respond to the following questions:

1. To what extent do existing federal monitoring and enforcement activities support efforts to provide effective special education and related services to improve results for children and youth with disabilities?

2. To what extent do existing federal monitoring and enforcement activities inhibit efforts to provide effective special education and related services to improve results for children and youth with disabilities?

3. What, if anything, should be changed to improve federal IDEA monitoring and enforcement of SEAs and LEAs? What would that/those changes look like?

4. To what extent does local capacity building need to occur for effective monitoring and enforcement of IDEA to be assured? How is local capacity building designed, implemented, and achieved?

The following excerpts from public testimony answer these questions, highlight the views of various sectors of the special education stakeholder community, and provide insight into the complexity of the monitoring and enforcement issues. While the statements included in this document reveal the diversity of opinion on the issues, it is clear that most experts in special education believe that a strong and effective system of monitoring, which includes an effective measure of enforcement, is an important component of IDEA implementation. The importance of engaging all stakeholders, including parents, in the process, is also a common theme.

But to dispel the notion that lawyers always want to litigate, I will say that we asked ourselves what we wanted to get out of litigation. And what we wanted was a monitoring process that actually worked. Leslie Seid Margolies

There were many ways my school could have helped me but they didn't, saying if they did things for me (for instance my mom wanted me to finish my last two years at a community college which has a good program for people with disabilities) other people would want such things. Even though there are laws some schools like mine find ways to get around them and make things hard for families. Adam, Student

After 15 months, our family spent more than $22,500 on attorney fees and 3 expert evaluations. The school district is estimated to have spent approximately $40,000. Ironically, at the end of the 15 months, the exact 504 Plan I had originally ask for (and the school site teamed eagerly embraced originally--until district office intervened) was again presented and adopted, Jo Ann Behm, Parent

I was kept in a resource room while my entire kindergarten at my school graduated. Alex, Student

Services recommended by our IEP team were regularly denied. Mary Dickter, Parent

Question 1: To what extent do existing federal monitoring and enforcement activities support efforts to provide effective special education and related services to improve results for children and youth with disabilities?

Summary: While few answers directly applicable to this question were identified in public testimony or other communications, there is a clear message that the current monitoring and enforcement activities are insufficient. Comments on the new Departmental initiative for monitoring--Continuous Improvement Monitoring--were positive. This concept is picked up again in Question 3 with a series of references to Focused Monitoring. Some argue for stronger sanctions, others argue for more targeted monitoring, some argue for both. More importantly, as reported throughout this document, are indications of significant implementation issues across the country which should be addressed with effective systems of monitoring and enforcement.

Mary, Student, Response to NCD Request for Comment from Youth, May 2002:

Most of my teachers have been willing to offer help in modifying and consolidating the workload to a manageable level for me to complete.

Alice Parker, testimony from the hearing before the President's Commission on Excellence in Special Education, "The Role and Function of Special Education Programs (OSEP) in the Implementation of Special Education," Washington, DC, April 26, 2002:

Monitoring in California: Our efforts have resulted in several statewide improvements. . . .The areas where things are going really well have a balance between procedural guarantee and outcome. . . .It is critical that all of the components are aligned: monitoring, technical assistance, training, the state implementation grants, and that all of the stakeholders, and especially our parents, are involved in each aspect of that which we do and are clear on the alignment.

Barbara Gantwerk, testimony from the hearing before the President's Commission on Excellence in Special Education, "The Role and Function of Special Education Programs (OSEP) in the Implementation of Special Education," Washington, DC, April 26, 2002:

[Much of the change in New Jersey] is due to the new but ever-changing monitoring system known as the Continuous Improvement Monitoring Process. . . .It allowed for state flexibility and has led to many changes in our state. . . .It has moved somewhat away from the compliance model to more of a program improvement model. . . .Another very positive aspect was the development of successful and collaborative partnership with the critical stakeholders in our state. . . .Because the model was such a good one for us, not an easy one, but a good one, we completely revised our own oversight system and monitoring system to replicate that model. . . .But the process led to improvement in a manner that was assumed to be very positive. The capacity-building funds enabled us to target specific problems in specific districts.

Asked by Commissioner/Ex Officio Member Robert Pasternack if the special monitoring conditions in NJ had helped:

". . .[The special monitoring conditions in NJ] did help us. [They sped] us into time warp zone to make some of the changes that we needed to make."

Question 2: To what extent do existing federal monitoring and enforcement activities inhibit efforts to provide effective special education and related services to improve results for children and youth with disabilities?

Summary: Insufficient enforcement, burdensome paperwork, inconsistent follow-through and slow turnaround on the federal level, long term patterns of noncompliance, too much procedure/not enough substance at the state and federal level, "big sweep"--no targets to identify and fix the real problems. Conclusion: There were no recommendations to cease federal monitoring, but an overload of comments illustrated the need for change to a less bulky, more timely, more focused system that results in solid outcomes for students and more classroom time for teachers. The recurring theme of the importance of including all stakeholders, including parents, found its way into this section as well. A lingering question about the paperwork requirements begs for an answer: "Does the common complaint of having too much paperwork stem from federal requirements or state regulations?" Some states have begun to recognize and address their issues on their own, others through the help from the Federal Government, or in some cases, the courts. Parents feel there is much more work needed on implementation. Parents are clear that the problems lie not in the Act itself, but in the implementation, taking us right back to the need for a strong system of monitoring and enforcement.

The administration and the school board didn't really do much to make sure the teachers were doing what they were required to do, Jessica, Student

There are clear implementation problems from the lack of enforcement--

U.S. Commission on Civil Rights, Recommendations for Reauthorization of IDEA, Washington, DC, May 2002:

. . .Despite the evidence of noncompliance, DOEd has made limited use of its authority to impose enforcement sanctions, such as withholding funds. As a result, the responsibility for enforcement has often been carried out by parents of disabled students who have invoked formal proceedings to ensure that their children's needs have been met.

Dr. Thomas Hehir, testimony before House Education and the Workforce Hearing, October 4, 2001:

The history of federal enforcement of IDEA has been relatively weak. One reason for this is the relative small size of the federal work force devoted to this issue, about fifty people.

Representative George Miller, IDEA Newsletter, June 27, 2002:

Some of the same proposals to significantly alter IDEA that were rejected in 1997 now are being raised again.  Many of these, according to experts, could potentially weaken the legal rights of children with disabilities and their families: cessation of services; denial of due process; elimination or severe weakening of procedural safeguards; private school vouchers. Some have even proposed giving states or the federal Department of Education broad authority to waive IDEA statutory and regulatory requirements. These proposals are being made despite the fact that twenty-seven years after the passage of P.L. 94-142, IDEA's civil rights protections for children with disabilities have yet to be fully implemented. To make matters worse, Congress had an opportunity last year to fund IDEA  at the level promised in 1975, but the Bush Administration and its allies in Congress rejected this proposal. While children with disabilities have made great strides in excelling within our educational system, many issues of serious noncompliance remain. States and localities continue to struggle with the mandate of educating special needs children in "the least restrictive environment" appropriate to their needs, and many other core tenets of the statute. 

Carol L. Grissett and Carole H. Long, Parents, NCD Request for Public Comment, February 24, 2002:

The primary problems appear to be (1) The blatant refusal of states to establish and implement policies, procedures, and programs to meet the provisions of IDEA; (2) The absence of any enforcement by authorities at the federal, state, and local levels results in the destruction of millions of children; (4) it is still impossible for children with disabilities placed in classes outside of the regular classroom to get access to the regular curriculum; (5) The IDEA regulations are designed to take the education decisions away from the parents of children with disabilities.

Marca Bristo, testimony before House Government Reform Committee, February 28, 2001:

I want to stress that while the statutory framework of IDEA envisioned states as the primary implementers of IDEA, over five administrations, the Federal Government has fallen short in its efforts to ensure the protections of the law for children with disabilities are enforced. This study [Back To School on Civil Rights] confirmed what children with disabilities have repeatedly told NCD, that noncompliance has persisted in some states over many years, placing enormous burdens on children and families

Jim Comstock-Galagan, testimony at the hearing before the President's Commission on Excellence in Special Education, Houston, TX, February 25, 2002:

The disconcerting fact is that traditional state education monitoring systems have repeatedly found local districts in violation of IDEA's LRE requirement, transition, over-identification, and the list goes on and on about substantive issues. This has spanned numerous years, and yet they [the violations] go uncorrected. . . .Long-term patterns of noncompliance are commonplace. . . .Little or no attention is paid to student progress or outcomes in monitoring. . . .Since IDEA was enacted, SEAs have almost invariably used a cyclical monitoring system where everybody gets treated the same. It doesn't matter what your LRE rates are, transition rates are, you're going to get what I commonly refer to as 'the big visit.' We've got to stop going into districts that are doing extremely well in all kinds of areas and saying, "we're coming for seven to ten days. We don't care how you're doing, we're going to look at everything." That's not common sense.

Barbara Raimondo, JD, NCD Request for Comment, May 29, 2002:

Current federal monitory and enforcement does not support efforts to provide effective special education and related services to improve results for children and youth who are deaf and hard of hearing. Monitors may see little if any information about deaf and hard of hearing children in the process and receive little if any input from parents of these children. Information about upcoming monitoring visits is not readily available and often parents of children with hearing loss are not included in the process.

Leslie Seid Margolis, testimony from the hearing before the President's Commission on Excellence in Special Education, "The Role and Function of Special Education Programs (OSEP) in the Implementation of Special Education," Washington, DC, April 26, 2002:

Much of the lack of implementation of the IDEA is attributable to inadequate monitoring and enforcement at the state level and to a federal monitoring system that sweeps too broadly, focuses too much on procedures and too little on substance, fails to produce timely monitoring reports and engages in enforcement action only rarely and inconsistently.

U.S. Commission on Civil Rights, Recommendations for Reauthorization of IDEA, Washington, DC, May 2002:

Uneven implementation of the law from one district to another, in the absence of uniform enforcement, has the effect of flooding "good" districts with special needs students when surrounding schools fail.

Lilliam Rangel-Diaz, Parent and Member of National Council on Disability, testimony before Senate Committee on Health, Education, Labor and Pensions, March 21, 2002:

The findings [of the NCD Back to School on Civil Rights Report] were a confirmation and documentation that the statute is strong, but implementation and enforcement are thin and inconsistent. This study confirmed what children with disabilities and their families have repeatedly told NCD, namely, that too many students: (1) did not receive FAPE; (2) were inappropriately placed in separate settings; (3) did not receive appropriate services when served in regular classrooms; (4) had not been able to access critical transition services and supports;(5) were not provided with related services such as speech therapy, physical therapy, or psychological counseling as reflected in their IEPs. And, (4) did not receive the benefits of procedural safeguards and protections in evaluation in some states. In addition the report told us that students from diverse backgrounds are disproportionately represented in separate education settings. . . . There are currently no clear and consistent effective (positive or negative) consequences for a state that continues substantial and persistent noncompliance. . . .Without standards that define the limits and provide appropriate sanctions, the incentives for corrections have not been compelling enough to stop the cycle of noncompliance.

Barbara J. Ebenstein, NCD Request for Public Comment, May 31, 2002:

. . . The patterns of noncompliance revealed in Back to School on Civil Rights in 2000 continue to exist in 2002, and the burden noncompliance places on families is still tremendous. School districts deny specific kinds of special education and related services to entire classes of children--for example, adaptive physical education, limitations on extended school year, psychological counseling, outdated IEPs, and insufficient transition services.

. . . Most noncompliance is a deliberate cost-cutting strategy. Existing federal monitoring and enforcement activities do little to provide appropriate special education and related services to students with disabilities. State and local agencies know that there is no real risk of federal monitoring or enforcement. They also know that should the Federal Government decide to monitor, they will permit plenty of time to get into compliance with no penalty.

Monitoring and enforcement problems start at the top--

Alice Parker, testimony from the hearing before the President's Commission on Excellence in Special Education, "The Role and Function of Special Education Programs (OSEP) in the Implementation of Special Education," Washington, DC, April 26, 2002:

We get timelines that we have to turn around so quickly and then we don't hear back for a long time. And by the time we get a response back, it's not one that we can use to inform our practice. We really need clarity about the expectations without things changing in midstream.

Barbara Gantwerk, testimony from the hearing before the President's Commission on Excellence in Special Education, "The Role and Function of Special Education Programs (OSEP) in the Implementation of Special Education," Washington, DC, April 26, 2002:

Requests for major pieces of documentation from the states tend to be works in progress, and the request may change midstream.

Dialogue between Commissioner (Ex-Officio Member) Edward Sontag, Barbara Gantwerk, Alice Parker and Martin Gould at the hearing before the President's Commission on Excellence in Special Education, "The Role and Function of Special Education Programs (OSEP) in the Implementation of Special Education," Washington, DC, April 26, 2002:

Dr. Sontag: If the feds are not monitoring in a timely manner, is the law going to work?

Dr. Gantwerk: I think it's typical that the reports take a long time. . . . by the time we got the report, we had had another monitoring visit. So the report was on a visit prior to the one that we had and had to sort of update with another visit.

Dr. Parker: I would respond similarly. We get reports later than one can use them.

Dr. Gould: What may be underlying or causing reports to be late [is that] the initial versions of the report have analysis and facts in them that may be disputable and may have to be withdrawn because the work done did not stand up to scrutiny, analysis, and debate. If that continues to be an issue with staff, then perhaps there might be some need to help those folks in the area of data analysis and writing for those reports, so that you don't go through unnecessary redrafts and back-and-forth.

Dr. Thomas Hehir, testimony from the hearing before the President's Commission on Excellence in Special Education, "The Role and Function of Special Education Programs (OSEP) in the Implementation of Special Education," Washington, DC, April 26, 2002:

I think empowering OSEP to be able to produce its own reports without a lot of other hands touching it would be central to that effort [of solving the problem of slowness of monitoring reports].

The issue of paperwork is frequently raised. As reflected in these comments, there is no one position on the question of paperwork. Administrators and teachers make a compelling case for the need to get a break from paperwork so they can get to the business of teaching. On the other hand, parents tend to believe teachers and administrators are hiding behind the paperwork issue to avoid the real and tough issues of providing quality education for their sons and daughters.

Assistant Secretary Robert Pasternack, testimony at the hearing before the President's Commission on Excellence in Special Education, Houston, TX, February 26, 2002:

Even if a state was in full compliance, it still might not guarantee improved results and outcomes for students. . . . The reality is some of the monitoring has focused on the wrong issue . . . it's focused on process and on compliance and on regulation and not on outcome and results.

Dr. Martin Gould, testimony from the hearing before the President's Commission on Excellence in Special Education, "The Role and Function of Special Education Programs (OSEP) in the Implementation of Special Education," Washington, DC, April 26, 2002:

I'd have to disagree that the civil rights law such as IDEA can be reduced to process. I think that some of the basic principles, particularly least restrictive environment is one that I have heard and seen Commissioners talk about as a key outcome and a result that's needed. I think there are many other instances where in the absence of following some fundamental provisions of the law, like looking at the individualized needs of a student, regardless of what some folks might think of the paperwork of an IEP, is an absolute necessity in developing accommodations.

Commissioner Adela Acosta, from the hearing before the President's Commission on Excellence in Special Education, "System Administration Task Force," San Diego, CA, April 23, 2002:

Hours spent on excessive paperwork, or its perception, is a significant barrier to effective delivery of education services to children with learning disabilities. Fifty-three percent of all special education teachers report that routine duties and paperwork interfere "to a great extent" with teaching.

Lillian Rangel-Diaz, Parent and Member of National Council on Disability, testimony before Senate Committee on Health, Education, Labor and Pensions, March 21, 2002:

During discussion part of Senate hearing: As an active parent advocate in my community in Florida, I am not aware of the issue of too much paperwork for teachers. This is just not an issue in our state.

Barbara Gantwerk, testimony from the hearing before the President's Commission on Excellence in Special Education, "The Role and Function of Special Education Programs (OSEP) in the Implementation of Special Education," Washington, DC, April 26, 2002:

This is a great law. We all agree with the goals of this law. One of the important goals is collaboration between families and schools, state and district, state and federal office, and this collaboration I believe is somewhat undermined by the incredible complexity, specificity and prescriptiveness of the law. And instead, sometimes-adversarial relationships are created. . . .Additionally, the law is not sufficiently focused on outcome. . . .It is more focused on compliance. . . .I do want to make certain that I mention that I'm very aware of the difficult task of balancing rights and protections with flexibility and simplifying the law. This is a difficult task.

Leslie Seid Margolis, testimony from the hearing before the President's Commission on Excellence in Special Education, "The Role and Function of Special Education Programs (OSEP) in the Implementation of Special Education," Washington, DC, April 26, 2002:

Many of the problems attributed to the statute such as too much paperwork and too many meetings are actually the result of poor policy and practice at the state and local levels.

Chancellor Harold Levy, testimony from the hearing before the President's Commission on Excellence in Special Education, "Assessment and Identification Task Force," Brooklyn, NY, April 16, 2002:

Too often teachers and other staff are diverted from their primary task of instruction. Even the most basic change in the student's IEP, for instance, requires teachers and other professionals to be pulled away from their core duties and spend significant time on largely administrative items. As a result, an inordinate amount of special education funding is spent on administrative compliance. This has resulted in a reduction in the already limited amount of funding available for improving instruction and supplementary services to students.

Dr. James Yselldyke, testimony from the hearing before the President's Commission on Excellence in Special Education, "Assessment and Identification Task Force," Brooklyn, NY, April 16, 2002:

As I travel around the country, my diagnostic personnel tell me that they engage in far too much time assessing children, making predictions about their lives, and far too little time making a difference in their lives, and they tell me that is because the Federal Government makes them do that. I believe they are lying, but you have to help them understand that they can actually do some of these things.

Richard H. Cate, NCD Request for Public Comment, May 21, 2002:

Current federal monitoring and enforcement activities include review of documents to ensure each state's laws, regulations, and policies are in compliance with federal regulations for the release of Part B funds. This time-consuming and costly process does little to improve results. In addition, OSEP monitoring of states uses a limited number o f school districts to identify systemic compliance issues. This system has traditionally focused on due process and procedural compliance issues rather than on results. We support many of the elements of the new continuous improvement monitoring process, especially the use of a self-assessment and a Continuous Improvement Plan that allows a state to place much greater emphasis on student outcomes. However, we are concerned that OSEP continues to prioritize process compliance, diverting state resources to issues that often do not have a direct impact on student performance.

William Dussault, testimony from the hearing before the President's Commission on Excellence in Special Education, "System Administration Task Force," San Diego, CA, April 23, 2002:

I don't view the federal paperwork requirement as particularly onerous. I work with school districts--I've worked against school districts, but with them, too. And what I see from local school districts is 40 and 50 forms and they keep telling me, the teachers keep saying, "Well, the Federal Government requires all these forms." And I keep going back and saying, "no, it doesn't. Look at what your LEA is doing; look at what your SEA is doing. In fact, that's where your form requirements are coming from." I don't think you really have much ability to affect that paperwork issue at the federal level unless you prohibit SEAs and LEAs from a proliferation of paper at the local level, which is a pretty tough stand to take. But I really see that as not a function of the federal law, but a function of state and district responses to it.

Mr. Steve Brown, Parent, Comments from the community at the hearing before the President's Commission on Excellence in Special Education, "System Administration Task Force," San Diego, CA, April 23, 2002:

Compliance and discipline provisions are a safeguard so that children like mine are not effectively tossed out of the system. My son will likely not measure up to a set of standardized outcomes on that kind of a driven system. You know, he is not going to get a diploma. [M]y fear is that he'll become, at that point, a write-off, really no chance to be successful in an educational system. You discussed today the issue of paperwork as being independent to education. The paperwork that I see for IEP goals has really been a useful guide and not really a compliance chore. My unscientific observation, based on my own experience as a parent, is that complaints about paperwork and compliance issues are generally symptoms of the underlying and more difficult problems that really need to be addressed in special education.

Allison Brenneise, Psychologist and Parent, Comment at the hearing before the President's Commission on Excellence in Special Education, "System Administration Task Force," San Diego, CA, April 23, 2002:

Paperwork is not the problem. I understand that we don't want to see 55-page IEPs, because we have them, and we have complete problems with getting the IEPs implemented. [W]e really need to focus on collecting data. If the staff who are working on the goals kept data when they were working with the child, their reports would write themselves, they would be able to have baselines.

Laura Gardner, Parent, NCD Request for Public Comment, May 19, 2002:

As a parent [of a son with Ausperger Syndrome, Tourettes Syndrome, a learning disability and giftedness] when I read the IDEA regulations, everything appears to be in place. There are specific procedures, definitions, and Appendix A is quite clear. . . . What I hear about cutting paperwork and implementing uniform discipline policies is simply an outrageous attempt to give schools yet more control . . . a way to relieve them of obligation.

Jeritza Montgomery, Special Education Teacher and IEP Coordinator, Civil Rights Commission, Briefing on Reauthorization of IDEA, April 12, 2002:

The main complaint is paperwork.

Dr. Kim Goodrich Ratcliffe, testimony before Senate Committee on Health, Education, Labor and Pensions, March 21, 2002:

. . .The paperwork burden is fundamentally detracting from the education of students with disabilities. . .. The tail is wagging the dog when the focus of education is directed toward paperwork rather than effective instructional practice. . .. Even after extensive training, teachers find it necessary to stop and consult with a process coordinator or director of special education to ensure compliant paperwork.

Dr. Edward Vargas, testimony from the hearing before the President's Commission on Excellence in Special Education, "System Administration Task Force," San Diego, CA, April 23, 2002:

The paperwork is firmly focused on compliance versus the quality of instruction; did we get all the forms right; did we get all the notices out? And very little time to really talk about relevant instructional interventions relative to that student's needs. . . .The majority of special educators spend a day or more of the instructional week on paperwork . . . Eighty- three percent spend a half to a day and a half days per week on IEP-related meetings. It's reported that 68 percent of teachers spend less than two hours per week on individualized instruction. And so, significant amounts of required forms, notices, and reports consume these blocks of teacher and administrative time.

Donna Carter, Parent, NCD Request for Public Comment, May 2002:

I am a parent of a child with special needs. The IDEA act is wonderful on paper but it not enforced at the district or state level. With the parenting group I have attended several IEP meetings and have heard a variety of excuses why the IDEA act is not enforceable. District doesn't have enough money or teachers are untrained just to name two. There has to be some way to enforce what is already written. It scares me to think that teachers and district personnel already try to get out of the paper work and implementing the goals. If they make the IDEA act any more passive children with special needs will suffer.

Question 3: What, if anything, should be changed to improve federal IDEA monitoring and enforcement of SEAs and LEAs? What would that/those changes look like?

We must continue to insist on holding school districts and States accountable for ensuring that children with disabilities have access to early intervention services and a free appropriate public education in the least restrictive environment. We must be bold in our solutions, and committed to change areas that need improving, but steadfast where the law works well. Assistant Secretary Robert Pasternack, March 21, 2002

Summary: Monitoring and enforcement is not easily contained as one specific issue. An effective monitoring system involves an examination of the program as a whole: process vs. outcome-based monitoring, IEPs, data collection, and systems of accountability. Thus, this section is divided accordingly, with a lead-in of more general observations. While comments reflect a clear divisiveness between parents and systems on a number of the issues monitoring, there is clear agreement that there are significant weaknesses in the current systems of monitoring and enforcement. Recommendations for improvements include who should monitor and what should be monitored; enforcement; the relationship between the states and Federal Government, outcomes; participation of parents, students and teachers in monitoring activities; and, the role of general education.

General Public Recommendations

There is a solid sense that monitoring will not work unless accompanied by enforcement strategies, including sanctions for states that are chronically noncompliant--

Dr. Thomas Hehir, testimony before House Education and the Workforce Hearing, October 4, 2001:

Support improved monitoring and enforcement of IDEA.

U.S. Commission on Civil Rights, Recommendations for Reauthorization of IDEA, Washington, DC, May 2002

A complaint-handling process should be established at the federal level, and state complaint systems should be monitored by OSEP for efficiency and effectiveness. . . .The Federal Government must ensure that state special education programs comply with IDEA by gathering adequate data on each state's implementation and developing national compliance standards.

DOEd should exercise its authority to sanction state and local education agencies that repeatedly fail to comply with IDEA by withholding allotments until compliance is achieved. To accomplish this, DOEd must conduct regular and thorough reviews of how states are spending federal funds. The amount of funds withheld should be based on level of noncompliance, and sanctions should be applied equally to all states.

Compliance is best achieved through consistent federal enforcement bolstered by support activities performed by states. . . .[S]tates should be given the same sanction authority as federal enforcement agencies to ensure that local special education programs comply with IDEA. States should scrutinize school district expenditures and allocate or withhold funds accordingly.

Dr. Karen Scheinbaum, public comment before President's Commission on Excellence in Special Education, Houston, TX, February 27, 2002:

I request Congressional legislation to change aspects of IDEA to provide for equal application of IDEA across all states and to require states like Texas, the President's home state, to rise to the level of education offered by other states like California, New Jersey, and Maryland.

Dr. Batya Elbaum, testimony from the hearing before the President's Commission on Excellence in Special Education, "System Administration Task Force," San Diego, CA, April 23, 2002:

The first principle is that the process should be public and explicit. . . .District-level data on key indicators must be made available to the public.

The formulas used to select districts for monitoring must also be made public. . . .All data collection procedures must be communicated in advance to the districts . . .. . .all monitoring reports must be made public and disseminated not only to school personnel but also to parents and other stakeholders.

Paula Goldberg, testimony from the hearing before the President's Commission on Excellence in Special Education, "The Role and Function of Special Education Programs (OSEP) in the Implementation of Special Education," Washington, DC, April 26, 2002:

We recommend strengthening the state complaint procedure by, one, requiring states to strictly comply with timelines, monitoring and enforcing findings and corrective action plans. And we also would like to see the complaints publicly stated as well as the resolution.

Elizabeth Brant, Parent, NCD Request for Public Comment, April 10, 2002:

Try to find a way to federally mandate some standards that the states must abide by when it comes to regulation of student services.

Rebecca Walk, testimony before President's Commission on Excellence in Special Education, Denver, CO, March 6, 2002:

With the new monitoring process, we write a state improvement plan. It's a quality improvement plan. My belief is that plan should be developed bef