[House Hearing, 107 Congress] [From the U.S. Government Publishing Office] SPECIAL EDUCATION: IS IDEA WORKING AS CONGRESS INTENDED? ======================================================================= HEARING before the COMMITTEE ON GOVERNMENT REFORM HOUSE OF REPRESENTATIVES ONE HUNDRED SEVENTH CONGRESS FIRST SESSION __________ FEBRUARY 28, 2001 __________ Serial No. 107-12 __________ Printed for the use of the Committee on Government Reform Available via the World Wide Web: http://www.gpo.gov/congress/house http://www.house.gov/reform _______ U.S. GOVERNMENT PRINTING OFFICE 75-592 WASHINGTON : 2001 ____________________________________________________________________________ For Sale by the Superintendent of Documents, U.S. Government Printing Office Internet: bookstore.gpr.gov Phone: toll free (866) 512-1800; (202) 512�091800 Fax: (202) 512�092250 Mail: Stop SSOP, Washington, DC 20402�090001 COMMITTEE ON GOVERNMENT REFORM DAN BURTON, Indiana, Chairman BENJAMIN A. GILMAN, New York HENRY A. WAXMAN, California CONSTANCE A. MORELLA, Maryland TOM LANTOS, California CHRISTOPHER SHAYS, Connecticut MAJOR R. OWENS, New York ILEANA ROS-LEHTINEN, Florida EDOLPHUS TOWNS, New York JOHN M. McHUGH, New York PAUL E. KANJORSKI, Pennsylvania STEPHEN HORN, California PATSY T. MINK, Hawaii JOHN L. MICA, Florida CAROLYN B. MALONEY, New York THOMAS M. DAVIS, Virginia ELEANOR HOLMES NORTON, Washington, MARK E. SOUDER, Indiana DC JOE SCARBOROUGH, Florida ELIJAH E. CUMMINGS, Maryland STEVEN C. LaTOURETTE, Ohio DENNIS J. KUCINICH, Ohio BOB BARR, Georgia ROD R. BLAGOJEVICH, Illinois DAN MILLER, Florida DANNY K. DAVIS, Illinois DOUG OSE, California JOHN F. TIERNEY, Massachusetts RON LEWIS, Kentucky JIM TURNER, Texas JO ANN DAVIS, Virginia THOMAS H. ALLEN, Maine TODD RUSSELL PLATTS, Pennsylvania JANICE D. SCHAKOWSKY, Illinois DAVE WELDON, Florida WM. LACY CLAY, Missouri CHRIS CANNON, Utah ------ ------ ADAM H. PUTNAM, Florida ------ ------ C.L. ``BUTCH'' OTTER, Idaho ------ EDWARD L. SCHROCK, Virginia BERNARD SANDERS, Vermont ------ ------ (Independent) Kevin Binger, Staff Director Daniel R. Moll, Deputy Staff Director James C. Wilson, Chief Counsel Robert A. Briggs, Chief Clerk Phil Schiliro, Minority Staff Director C O N T E N T S ---------- Page Hearing held on February 28, 2001................................ 1 Statement of: Guard, Patricia J., Acting Director, Office of Special Education Programs, U.S. Department of Education; Melinda Baird, JD, Knoxville, TN; Gary Mayerson, JD, New York, NY; Bill East, executive director, National Association of State Directors of Special Education, Inc.; and Ed Amundson, National Education Association................... 123 Hooley, Hon. Darlene, a Representative in Congress from the State of Oregon............................................ 38 Lamontagne, Ovide, Manchester, NH; Ginger Brown, Columbus, IN; Stephanie Fry, Indianapolis, IN; Pat Antenellis, Framington, MA; Carolyn Nunes, special education program manager, San Diego, CA; Kevin McDowell, general counsel, Department of Education, Indianapolis, IN; and Marca Bristo, chair, National Council on Disability.............. 44 Letters, statements, etc., submitted for the record by: Allen, Hon. Thomas H., a Representative in Congress from the State of Maine, prepared statement of...................... 330 Amundson, Ed, National Education Association, prepared statement of............................................... 310 Antenellis, Pat, Framington, MA, prepared statement of....... 85 Baird, Melinda, JD, Knoxville, TN, prepared statement of..... 137 Bristo, Marca, chair, National Council on Disability, prepared statement of...................................... 104 Brown, Ginger, Columbus, IN, prepared statement of........... 65 Burton, Hon. Dan, a Representative in Congress from the State of Indiana: Charts concerning special education...................... 3 Prepared statement of.................................... 22 East, Bill, executive director, National Association of State Directors of Special Education, Inc., prepared statement of 301 Fry, Stephanie, Indianapolis, IN, prepared statement of...... 72 Guard, Patricia, J., Acting Director, Office of Special Education Programs, U.S. Department of Education, prepared statement of............................................... 127 Hooley, Hon. Darlene, a Representative in Congress from the State of Oregon, prepared statement of..................... 40 Kucinich, Hon. Dennis J., a Representative in Congress from the State of Ohio, prepared statement of................... 332 Lamontagne, Ovide, Manchester, NH, prepared statement of..... 47 Mayerson, Gary, JD, New York, NY, prepared statement of...... 198 McDowell, Kevin, general counsel, Department of Education, Indianapolis, IN, prepared statement of.................... 93 Morella, Hon. Constance A., a Representative in Congress from the State of Maryland, prepared statement of............... 35 Nunes, Carolyn, special education program manager, San Diego, CA, prepared statement of.................................. 56 Waxman, Hon. Henry A., a Representative in Congress from the State of California, editorial entitled, ``Special Education, Discarded Vow,''................................ 31 SPECIAL EDUCATION: IS IDEA WORKING AS CONGRESS INTENDED? ---------- WEDNESDAY, FEBRUARY 28, 2001 House of Representatives, Committee on Government Reform, Washington, DC. The committee met, pursuant to notice, at 1:45 p.m., in room 2154, Rayburn House Office Building, Hon. Dan Burton (chairman of the committee) presiding. Present: Representatives Burton, Morella, Shays, Horn, Barr, Davis, Platts, Weldon, Putnam, Schrock, Waxman, Owens, Maloney, Norton, Kucinich, Tierney, and Schakowsky. Also present: Representatives Cunningham, Pence, and Sununu. Staff present: Kevin Binger, staff director; Daniel R. Moll, deputy staff director; S. Elizabeth Clay, Nicole Petrosino, and Jen Klute, professional staff members; Marc Chretien, senior investigative counsel; Sarah Anderson, staff assistant; Robert A. Briggs, chief clerk; Robin Butler, office manager; Michael Canty and Toni Lightle, legislative assistants; John Sare, deputy chief clerk; Corinne Zaccagnini, systems administrator; Sarah Despres, minority counsel; Ellen Rayner, minority chief clerk; and Earley Green, minority assistant clerk. Mr. Burton. Good afternoon. A quorum being present, the Committee on Government Reform will come to order and I ask unanimous consent that all Members' and witnesses' written and opening statements be included in the record, and, without objection, so ordered. I ask unanimous consent that all articles, exhibits and extraneous or tabular material referred to be included in the record, and, without objection, so ordered. During the 106th Congress we began looking at the increased rates of autism. As we did that, we repeatedly heard from families that they were facing serious challenges obtaining services from their schools. Any family that is raising a child with a developmental delay or a learning disability or a physical disability faces tremendous challenges on a daily basis. Through this investigation, we have already learned that families are physically, emotionally and financially exhausted. Why is it that when we have a Federal law that requires that every child receive a free and appropriate public education, many families are having to go to court to receive these services? And it's very costly. The committee received thousands of e-mails, telephone calls, and letters and faxes from families, teachers, administrators and organizations about the implementation of the Individuals with Disabilities Education Act [IDEA]. Congress has focused on the educational needs of the disabled for over 25 years. In 1975 Congress passed the Education for All Handicapped Children Act, the EHA Act, and the EHA guaranteed that eligible children and youth with disabilities would have available to them a free appropriate public education. We have heard a great deal in the past hearings about the increased rates of autism, and my family's been touched by that. In 1999 there were 2,462 children ages 3 to 21 in Indiana diagnosed with autism. With the dramatic rise of autism--in fact, we have a chart that shows the increase and how it's been rising--with the dramatic rise of autism will be a dramatic rise in requests for special education services. Are schools across the country prepared to handle the needs of children with autism? It used to be 1 in 10,000 children were autistic. Now, it's 1 in 500 and in Indiana, my home State, it's 1 in 400. [The information referred to follows:] [GRAPHIC] [TIFF OMITTED] T5592.001 [GRAPHIC] [TIFF OMITTED] T5592.002 [GRAPHIC] [TIFF OMITTED] T5592.003 [GRAPHIC] [TIFF OMITTED] T5592.004 [GRAPHIC] [TIFF OMITTED] T5592.005 [GRAPHIC] [TIFF OMITTED] T5592.006 [GRAPHIC] [TIFF OMITTED] T5592.007 [GRAPHIC] [TIFF OMITTED] T5592.008 [GRAPHIC] [TIFF OMITTED] T5592.009 [GRAPHIC] [TIFF OMITTED] T5592.010 [GRAPHIC] [TIFF OMITTED] T5592.011 [GRAPHIC] [TIFF OMITTED] T5592.012 [GRAPHIC] [TIFF OMITTED] T5592.013 [GRAPHIC] [TIFF OMITTED] T5592.014 [GRAPHIC] [TIFF OMITTED] T5592.015 Mr. Burton. Are teachers and administrators trained in the changes in the Federal laws regarding special education? Are families fully informed early in the process about their rights? In the State of Indiana, requests for special education services for children with autism increased by 25 percent in just 1 year. What does this mean for the local school districts? The Indiana Resource Center for Autism is piloting a parent training program. This program helps parents of newly diagnosed children with autism spectrum disorders understand the impact of autism on their child and their family. They explain the various program options available, how to support and educate their child, how to access services across Indiana and how to identify and access appropriate and effective special education services, including their rights under the Federal law. While we focus our discussion on the educational challenges of families with autistic children, the implementation of IDEA and the importance of schools complying with congressional intent applies to all children, all children with special education needs. We have tremendous input from parents with children with Attention Deficit Disorder, with Downs Syndrome, children who are hearing and/or vision impaired, and children with physical limitations. President George W. Bush said with the introduction of his education blueprint, the Federal role in education is not to serve the system, it is to serve the children. And that's all of the children. I agree with President Bush 100 percent. While there are many issues we could look at regarding special education and the implementation of IDEA, what we must keep in mind as we do this, is that it is about our children. We are talking about making sure that each child, every child, has an opportunity to excel to the best of their own abilities through a free and appropriate public education. I just noticed they put my grandkids up there, and if you want to know what my grandkids look like, there they are. The one that's smiling is my granddaughter, and the one who is not smiling is our grandson Christian, who is autistic. The President's blueprint offers four objectives: increasing accountability for student performance, focusing on what works, reducing bureaucracy and increasing flexibility, and empowering parents. As we heard from thousands of families across the country, we found similarities in their desires in the four objectives of the President's education blueprint. We repeatedly heard that parents did not want their children to be warehoused or placed in classes where they were not intellectually challenged. We repeatedly heard from the disability community and families about the need for accountability for schools that do not comply with the law. We heard from families that they want their children to be in programs that are going to improve their children's lives. For some children with autism, that might be 1 hour of speech therapy 5 days a week, rather than 30 minutes 2 days a week. For other children it may be 40 hours a week of applied behavioral analysis at an early age to improve the child's educational experience and ability to interact and communicate. For a child with physical limitations, it may mean having a full-time aide assigned to assist them in a regular classroom or access to a computer with special communication software. Smaller classroom size in both special education and regular education classrooms was repeatedly mentioned. We also have heard from teachers and administrators about increased paperwork burdens. We need to find the proper balance in meeting reporting requirements while taking advantage of new computer technology that can make these reporting requirements easier and less burdensome. Families across the country do not feel that their schools are following the IDEA law. A majority of over 2,500 families we heard from had to fight for services. And that is almost criminal. The law requires that these parents get the help they need and not have to go to the legal remedies necessary to get these services. We repeatedly heard from families that the schools do not inform them of the programs available to their children or of their rights under the law. We also learned that families spend tens of thousands of dollars out of pocket to obtain educational services for children as well as to hire lawyers to fight for their children's educational needs, and some of these people have been forced almost into bankruptcy because of that. Today we will hear from a broad spectrum of witnesses. Unfortunately, one of our witnesses, a very good friend of mine, Ms. Sally Duncan Griffith, could not be here as planned. She had a valuable story to tell about raising a disabled child. Unfortunately her child was hospitalized this weekend, in critical care, and our prayers go out to the family. I'm pleased that Congresswoman Darlene Hooley of Oregon is here today. She has introduced H.R. 659, a bill to achieve full funding for Individuals with Disabilities Act, Part B, by 2006. Congress made a commitment that the Federal Government and State and local governments would share in the expense of educating children with disabilities. We made a commitment to contribute up to 40 percent of the average per-pupil expenditure of educating children with disabilities, and to date the Federal Government has never contributed more than 14.9 percent. We pledged 40 percent. This has got to change and we are going to try to help get that done. The chart shows that Congress has repeatedly increased funding of IDEA even above what prior administrations have requested and we are talking about Republican and Democrat administrations. I will be working with my colleagues in the Congress to ensure that we step up to the plate and fulfill our commitment to the IDEA and to the disabled children of this country. And as we do this, it's important the schools use this money for special educational children and not for other projects. The intent of a Federal investment in special education is to fund the additional cost of providing educational services to disabled children. These funds may mean better pay for teachers and aides, more teachers and aides for the classroom, more and better training for regular and special education teachers on specific disabilities such as autism, and better educational tools. It was never congressional intent that taxpayer dollars be spent on hiring attorneys to fight parents in long and expensive court battles that will keep children from getting these services. The role of special education directors, teachers, and administrators is to serve the children and not the system. The new mantra at the Department of Education is that no child be left behind, and you have heard that several times recently. It is very important that no child be left behind, including any child with any kind of disability. Our new First Lady is to become an ambassador for education. She is going to devote her energies to recruiting teachers across the country. And I applaud her in this endeavor and will be sending her a personal letter. And I'll ask my colleagues, Henry Waxman, the ranking Democrat, and others on both sides to sign that letter, making sure that she include in that recruitment special educational teachers, speech and occupational therapists that we desperately need in our school systems across the country. We in Congress may also have to be creative in special education career development. For instance, maybe we should look at developing student loan repayment programs similar to medical school repayment programs; this loan repayment program would be for individuals who will become special education teachers or speech therapists who will teach for a 5-year period in rural or inner city schools or areas identified to be in desperate need of special education teachers and/or speech therapists. When Congress passed legislation to require a free and appropriate public education to all children with disabilities, we never envisioned that parents would have to fight for these services. We never envisioned that schools would refuse to accept the diagnosis of a doctor and then not evaluate a child for 6 months or a year, which is a lifetime in many kids' lives, delaying all services until the school evaluation is obtained. With an autistic child, early and aggressive intervention is universally recognized as imperative. A 6-month delay can have a detrimental effect on the child for years and maybe their lifetime. The delay may also mean that over the long-term the child will have fewer communication skills. When Congress passed IDEA we never envisioned that schools would tell parents if we provide it for your child, then we'll have to provide it for everyone. We repeatedly heard from families that schools used this as an excuse not to provide services. If the service is an appropriate service to meet the educational needs of a disabled child, any child with the same disability in the school should be offered the same access that is appropriate. And I'd just like to say that for those of you who don't know it, my grandson is autistic. I went with my daughter to her school. We went there because she was getting 1 hour of help a week with his speech impediment, his speech problem, and they talked to us for about an hour, and they decided that 1 hour was sufficient, even though they had correspondence from doctors on his case that said he needed at least 2 hours of speech therapy a week. And I asked them, because it became apparent during the meeting--this is in my District, incidentally--it became apparent during the meeting they had made the decision before we even got there. I said to them, why did we even come here if you've already made up your mind? Why? Now, you know, I'm chairman of this committee and Henry's one of the leading Members of Congress on the Democrat side. If we go to a school with an autistic child or grandchild and we get this kind of response, what does that mean for the average citizen that doesn't have any influence? And that's why a lot of people feel like they don't have any place to turn. Well, we are going to try to change that and I know that people on both sides of the aisle, Democrats and Republicans, feel this way, and we are going to do everything we can to make sure that happens. Now, I recognize my colleague Mr. Waxman for his statement. [The prepared statement of Hon. Dan Burton follows:] [GRAPHIC] [TIFF OMITTED] T5592.016 [GRAPHIC] [TIFF OMITTED] T5592.017 [GRAPHIC] [TIFF OMITTED] T5592.018 [GRAPHIC] [TIFF OMITTED] T5592.019 [GRAPHIC] [TIFF OMITTED] T5592.020 [GRAPHIC] [TIFF OMITTED] T5592.021 [GRAPHIC] [TIFF OMITTED] T5592.022 [GRAPHIC] [TIFF OMITTED] T5592.023 Mr. Waxman. Thank you, Mr. Chairman, for recognizing me and I want to thank you for holding this hearing. And I will join with you on that letter to the First Lady encouraging her to include special education as part of her mission. I'm pleased that we're holding this hearing to examine the implementation of an important civil rights law that protects children with disabilities, the Individuals with Disabilities Education Act [IDEA]. This legislation was passed to ensure that children with physical, mental and emotional challenges receive a free and appropriate public education provided, to the extent possible, alongside children without disabilities, in mainstream classes, using any accommodations needed to support his or her placement. Unfortunately, implementation of and compliance with IDEA throughout the Nation is inconsistent. The National Council on Disability, the independent Federal agency that monitors IDEA implementation, found that former Education Secretary Riley's efforts to monitor compliance and take enforcement actions were more aggressive than any of his predecessors' efforts combined; yet, despite Secretary Riley's efforts, Federal enforcement of IDEA continues to be ineffective. What that means in practical terms is that some children who are by law entitled to educational services don't get them and must seek legal recourse. Part of the blame for this situation lies with Congress. IDEA calls for the Federal Government to provide up to 40 percent of the additional costs of educating children with disabilities. However, Congress has historically appropriated funding for only 12 to 13 percent of these costs. That's wrong. Instead of appropriating the $17 billion that would be necessary to meet our full Federal 40 percent obligation to the States, Congress for this year, fiscal year 2001, has appropriated only $6.3 billion, and that in itself was more than a 20 percent increase over the $5 billion that was provided in fiscal year 2000. When the Federal Government does not do its share, every dollar that a State must divert from regular education to cover special education costs that Congress should have paid for is a dollar that leaves our students and our schools shortchanged. As the Los Angeles Times put it last Thursday in an editorial entitled, ``Special Education, Discarded Vow,'' without substantial help, school districts end up raiding other instruction, pitting child against child. And I'm going to ask, Mr. Chairman, that this editorial be made part of the record. Mr. Burton. Without objection. [The information referred to follows:] [GRAPHIC] [TIFF OMITTED] T5592.024 Mr. Waxman. In the last Congress, former Education and Workforce Chairman Goodling introduced legislation that would have authorized full funding for IDEA by 2010. This legislation was supported by every member of the Government Reform Committee on both sides of the aisle. Mr. Goodling's bill passed the House but stalled in the Senate. There are several bills pending in the House again this year, including one introduced by our first witness, Representative Hooley, and I hope that we can all agree to meet our obligation to the States and to the children who need this funding and follow Representative Hooley's leadership. Another issue that I want to raise is a little-known loophole in that 1997 amendment to the IDEA that permits local school districts to shift education funding to noneducational purposes. As a result, local school districts this year could shift $270 million that would otherwise have been spent on special education into their general treasuries. This number will only continue to rise the more we commit at the Federal level to IDEA. I commend Mr. Tierney and Mr. LaTourette, both members of this committee, for their bipartisan introduction of H.R. 714 which would close this loophole and require that all funds allocated for IDEA be spent on educational expenses. Other members of this committee, including Mrs. Morella and Mr. Lantos, Mr. Kucinich and Mrs. Mink, have joined me in cosponsoring this important bill, and I hope this legislation helps ensure that all the money designated for education is spent appropriately. I do not want to convey the impression that IDEA has been a failure. It has not. Before 1975 when the first version of the law was enacted, many children with disabilities were not educated at all. The original Education for All Handicapped Children Act brought about 1 million disabled kids into the education system for the first time and provided services for millions more who were attending school without the support they needed to overcome the challenges of their disabilities. In the years since, the educational rights of children have been expanded and today approximately 6 million children with disabilities receive services under IDEA. Today we're going to look at ways those children are helped by the law and how we can do a better job of providing the educational and related services they need. I want to thank all of the witnesses for coming today. I look forward to their testimony. I want to indicate to the witnesses and others here that, unfortunately, different committees scheduled their hearings at the exact same time, so I'm going to be bouncing back and forth, but we will have the record, and that record will be very helpful for all of our colleagues to be educated further on this issue. Mr. Chairman, I thank you for your leadership and we look forward to taking this record and trying to correct the problem to make sure this law, which was a good one, is implemented the way it should be. Thank you. Mr. Burton. Thank you Mr. Waxman. Further discussion? Mr. Barr. Mr. Barr. Thank you, Mr. Chairman. The only thing I'd like to mention is as we conduct our oversight today and throughout this session under your leadership, Mr. Chairman, regarding IDEA, while the primary focus will be funding and to take steps to ensure that the program is meeting the needs of the American people as addressed already by Congress, there are some perhaps what might be considered tangential but very important issues that I hope we address. One is to address the issue of violence in our schools and to ensure, as we tried to address in the last Congress, that some of the perhaps unintended consequences of IDEA do not hamper local schools from protecting students. If a student who falls under the provisions of IDEA poses a danger to the other students or to teachers, for example, by bringing a weapon to school, we don't want to see the danger perpetuated by IDEA, tying the hands of the local school to take disciplinary steps to protect the other students. That's something, as the chairman is aware, we addressed in the last Congress. It remains somewhat unresolved, and I would hope that would be part of our oversight because, of course, throughout all of these efforts, Mr. Chairman, first and foremost must be the protection of our students and our teachers. So I do hope that remains and will be part of our oversight efforts regarding IDEA. Thank you, Mr. Chairman. Mr. Burton. Thank you Mr. Barr. Mr. Tierney. Mr. Tierney. Thank you, Mr. Chairman, and thank you for having this hearing today on a very important subject. I thank all of our witnesses whose written testimony has already been helpful to many of us, and I'm sure the record of this hearing will continue to be helpful. Let me just recount a little bit of the history on this. The Federal role in education has always been a limited one and for some period of time didn't exist. I think most people realize that. The obligation to educate our children rests 100 percent with the States, and I think that's something we shouldn't forget. The absolute fundamental obligation to educate our children, all children, is with each and every one of the States in this country. Unfortunately, we found out before the 1960's that obviously States are not meeting that obligation. They were not educating and identifying many, many, many children with special needs. As a result, a series of acts were enacted by the Federal Government, giving States the option, if they chose to get Federal help, to meet certain standards, thresholds, with which they had to comply; virtually, State opted to accept the Federal assistance and to take the help that was available. Now, in the early authorizations, it was authorized that the Federal Government would contribute up to 40 percent of moneys expended on IDEA. That was certainly a noble goal but unfortunately something that the Congress at that time apparently knew it wasn't going to be able to meet, because since the very first appropriations the amount was far less than that 40 percent. I commend my colleague, Ms. Hooley, for putting the bill before us--she's going to speak to it today--to raise that amount, and I think it is appropriate to try to do that. I just think we should not lose focus that this is the Federal Government hopefully coming in to be helpful, hopefully setting some standards, minimum thresholds, and hopefully encouraging States to live up to their commitment and their obligation to educate children. The last part of that is I thank Mr. Waxman for making comment on the bill that I filed with Mr. LaTourette and which others on this committee, Mrs. Morella, Mr. Lantos, Mr. Kucinich and Mrs. Mink, have cosponsored also. The way the law is currently constructed, we could continue to give a higher percentage of Federal money and some of that may well go right out the window. If our intention is in fact to make sure that we increase the percentage of Federal money that's given through IDEA, then we're going to have to close that loophole. We're going to have to make sure that once we hit the $4.1 billion mark that States aren't able to draw out 20 percent of that amount and put it somewhere else. Right now, we would have no way of telling where they're going to put that, and it amounts to some $270 million so far. At the very least, we ought to obligate the States to keep that $270 million in the field of education, and if we're entirely successful, hopefully they'll put as much as is needed into special education so this program works the way it's intended for everybody. So we look forward to working with the chairman and the rest of this committee, as well as the Education Committee on which I and some others also serve, to get this job done. And we thank everybody for making their testimony available us to here today. Thank you, Mr. Chairman. Mr. Burton. I think that's a very good bill, and I wish you would add me to your bill with Mr. LaTourette. Mrs. Morella. Thank you. Mr. Chairman in the interest of time, my excellent statement that I have before me urging that IDEA be raised to the Federal commitment of 40 percent I will ask be included in the record, and I am concerned about a backlash toward those students with disabilities if we don't fulfill our commitment. Thank you, sir. [The prepared statement of Hon. Constance A. Morella follows:] [GRAPHIC] [TIFF OMITTED] T5592.258 [GRAPHIC] [TIFF OMITTED] T5592.259 [GRAPHIC] [TIFF OMITTED] T5592.260 Mr. Burton. Thank you, Chairwoman Morella. It shall be done. Did you have a comment, Ms. Schakowsky? Ms. Schakowsky. Just briefly, Mr. Chairman, and thank you for holding this hearing. I want to thank Representative Hooley. I look forward to her testimony and give a very special welcome to Marca Bristo who is chair of the National Council on Disability, from Chicago, my hometown, and a very good friend and really one of the Nation's leading advocates for persons with disabilities. Thank you. Mr. Burton. Thank you, Ms. Schakowsky. Further discussion, Mr. Horn. Mr. Horn. Just briefly, I want to commend you, Mr. Chairman for getting this important topic. There are thousands of people and parents that will be welcoming this airing of the issue. Over a year ago, Charles Bass, colleague from New Hampshire, had told us that we should assume that 40 percent, because we've never got it up to the full level, it ought to be there because it is squeezing other students out of the system to get enough money to help the students that we are talking about. Mr. Burton. Mr. Shays. Mr. Shays. Thank you, Mr. Chairman. Not an eloquent written statement, just a heartfelt one. Thank you for holding these hearings. I thank my colleagues for being here and thank our witnesses for their willingness to wait and our panelists for participating; and also to say that I, too, want to join others in saying that every year we should work toward full funding of IDEA. Thank you, Mr. Chairman. Mr. Burton. Thank you, Mr. Shays. Mrs. Davis. Mr. Putnam. Very well. We now will recognize the gentlelady Mrs. Hooley, and I would like to start off by saying I appreciate you introducing your bill and I wish you would add me to it. I think we should have strong bipartisan support for it, and anything I can do to be of help I will do. Can you turn on your mic and pull it closer to you, Ms. Hooley. STATEMENT OF HON. DARLENE HOOLEY, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF OREGON Ms. Hooley. Thank you, Mr. Chairman. I appreciate your comments and I would like to associate myself with those as well as Ranking Member Waxman, and thank you for allowing me this opportunity to testify. And I'm going to be very brief because you have the really important people sitting behind me that you want to hear from. And this is an issue as has already been introduced as talking about children with special needs. Again, this bill was introduced almost 26 years ago, and it was estimated at that time that the cost of educating a special needs child would be about twice what other students cost, and that we said we would pay 40 percent of that excess cost, and you are all aware we haven't done that. This year was the best year we've ever done, to bring it up to 14.9 percent. But let me give you an example of a typical student with disabilities from my district. We'll call this student Susie. She's an autistic child, like your grandson. The cost of a special education teacher for Susie is about $64,000. An instructional aide costs a little over $29,000. Susie requires 3 hours of physical therapy per month. The cost is a little over $1,100 per year. An autism specialist consultant comes in to work with Susie 9 hours per month, which costs $3,647. Other costs include $627 for 2 hours per month with a registered nurse, $500 for special supplies and equipment, and $14,800 for transportation services. When you add all of that up, Susie for 1 year costs $109,377. Now, other children in the school without special needs are $5,675. We thought when we enacted this--we didn't think it would be that high, but it is. And if you looked at one school district where there are 98 children that have disabilities, if they all required the same amount of time and effort that Susie requires, their bill would be over $10 million a year. Now, they don't all do that, but that's just to give you some numbers. Special education can be expensive, but I don't think anyone will argue that these children deserve the services they're receiving, and likely more. And as you talked about, Mr. Chairman, a lot of these children don't get the services they need. By not paying our share of the costs, the Federal Government is putting States and local communities between a rock and a hard place. When the State of Oregon and the Salem- Keizer School District have to make up that money we aren't providing, they're taking that money for someone else or they're not providing the services. I have introduced legislation, with many of you sitting up there, that would really try to address this 40 percent issue, and it is time we talk about it, we pass resolutions and then we don't put our money where our mouths are, and this would take the next 5 years and say we are going to increase the funding by $3 billion a year to get to the 40 percent by 2006. I think that is a reasonable plan, you know, and it is really based on somebody's wonderful idea when we increased funding for the National Institutes of Health, but we said we're going to double it in 5 years. I think we need to get IDEA's funding up to 40 percent in the next 5 years, and I think with all of your help we can do that. I think it's time we kept the promises we made to our children. Thank you. Happy to answer any questions you have. [The prepared statement of Hon. Darlene Hooley follows:] [GRAPHIC] [TIFF OMITTED] T5592.025 [GRAPHIC] [TIFF OMITTED] T5592.026 Mr. Burton. Well thank you, Ms. Hooley. I think you've covered it very well and we certainly will support your legislation. Ms. Hooley. Thank you. Mr. Burton. The costs that you talked about, let me just ask one or two questions, and make a comment. Ms. Hooley. Sure. Mr. Burton. The costs that you're talking about for children with various physical disabilities and handicaps such as autism. Ms. Hooley. Right. Mr. Burton. They're not all that expensive. Ms. Hooley. No they're not all that expensive. Mr. Burton. The child you mentioned had some physical handicaps as well as being autistic? Ms. Hooley. Right. Mr. Burton. So I wouldn't want my colleagues to think that every child is going to cost $100,000 a year because they have disabilities. Many of them--and I'll take my grandson as an example--he only requires 1 extra hour a week of speech therapy. And so a lot of the children are like that. Some have the majority of problems, greater or less, and so I don't know what the average cost would be. But I think our colleagues, when they start thinking about the budget we're facing and the budget the President prepared last night, the first thing they think is, oh, my gosh, we are going to blow the budget out the window if we start doing some of these things. The fact of the matter is, if you averaged it all out, it would be something that's manageable, workable, as long as we meet our commitment. Ms. Hooley. It is something that is manageable for all of us, and again, this was an example of a very high-end child. You're right, there are some that are twice. There are some that are one-third more, some like your grandson that are a little bit more. So the range is huge but it is--what I tried to do is illustrate that you do have this wide range, and for school districts also to provide the services--and we want them to provide the services and we want them to be willing to provide the services, but we also need to do our share. And that's really the only point I'm making, is it's time that we step up to the plate and do our share. Mr. Burton. Ms. Schakowsky, do you have any questions? Any questions Dr. Weldon? Mr. Weldon. Thank you, Mr. Chairman. One of the things I'm interested in is medical costs associated with dealing with these children. The intent of the law was to make sure that they get a proper education. But often there are medical issues that get tied up in the proper education and I think that's one of the issues we are struggling with. You mentioned physical therapy on the child that you cited. You don't have any more details on that at all---- Ms. Hooley. I don't. Mr. Weldon [continuing]. That you could provide me? Maybe in the future you could. Ms. Hooley. I would be happy to get more details and provide those for you. Mr. Weldon. It's a fine line sometimes: When is it medical and when is it educational? And you can't educate them unless their medical needs are being taken care of. But when you start looking at these very expensive kids, a lot of times the health issues are becoming a major factor. I appreciate your leadership on this, and I do want to thank you so much for your testimony, and I'll be looking at your bill as well. And I have signed letters to the effect of increasing the funding to the full 40 percent level in the past, and I hope that I'll be able to sign on to your bill as well this year. Thank you so much. Ms. Hooley. Thank you. I just want to make one response to your comment. And you're right; it is sometimes a fine line. But when you talk about physical therapy, sometimes that is how to hold a pencil or pen in your hand so that you can actually do the work. Thanks. Mr. Burton. Any more questions from any Members? Any other questions? Mr. Horn. Mr. Horn. I'd simply like to short-circuit the system, and please add me to your bill. Ms. Hooley. Thank you. Mr. Burton. Any further comments or questions? Ms. Hooley. Any other people that would like to be added, you can just raise your hand. Thank you. Mr. Burton. OK. Well, thank you very much Congresswoman. Ms. Hooley. Thank you so much. Mr. Burton. Appreciate it. We'll now have our next panel come forward, and if I don't pronounce your names properly, forgive me. Mr. Ovide Lamontagne; Ginger Brown of Columbus, IN; Stephanie Fry of Indianapolis; Pat Antenellis from Massachusetts; Carolyn Nunes, special education program manager from San Diego; Kevin McDowell, general counsel, from the Department of Education in Indianapolis; and Marca Bristo, chair of the National Council on Disability. And we will have some of these very fine individuals introduced by Members of Congress who have been here with us today. And first of all, let me ask you all to be sworn, those of you--would you stand and raise your right hands? [Witnesses sworn.] Mr. Burton. I'll now recognize the great Congressman from the great State of New Hampshire, Mr. Sununu, for an introduction. Mr. Sununu. Thank you, Mr. Chairman. I'm grateful to see the number of members that have come to the hearing today and certainly pleased that you are engaged in this extremely important discussion about education first and foremost. And we heard in the President's address last night, and of course in the comments of the committee members today, how important that issue is and, in particular, your focus on IDEA and in special education. This is a critical issue, not just here in the Nation's Capital, but back at home. Anyone that's visited with parents and teachers, school board members and administrators have heard many of the concerns that have been echoed here today raised. This is a significant unfunded Federal mandate. Despite the fact that as a member of the Budget Committee, I am pleased that we have doubled funding over the last 4 years, we know there's much more work to do, and moreover it's not just a matter of resources. This is a complex problem. It is a complex Federal regulation. It has issues regarding administration and planning, adjudication, resolution, the issues of health care as well that were just raised by Congresswoman Hooley and Congressman Weldon and others. We need to make sure that this program works, that it works effectively, that it delivers a benefit and addresses the needs of students. And I'm very pleased to be here today to introduce a resident of my district, a teacher, former member of the Board of Education in New Hampshire, a former chair of the Board of Education in New Hampshire, Ovide Lamontagne. Ovide has a professional experience dealing with education in general, and special needs education in particular, in his capacity on the board of education. He's also worked, of course, as a lawyer and as a counsel for the State Senate in New Hampshire and had to wrestle with these issues in a professional sense, but he also is able to provide a personal perspective as a parent as well. And I think we're fortunate to be able to draw as legislators on a panel like this that is represented by not necessarily elected officials, but by parents, administrators, teachers, with that personal experience administering special needs education, working with the unfunded mandate, dealing with some of the cost constraints back home, to bring their perspective here and to ultimately help us to make this important program work better for the parents and the teachers back home. It's my distinct pleasure to introduce Mr. Ovide Lamontagne. Mr. Burton. Welcome, Mr. Lamontagne. I have got that name correct now. I'm going to work on my French. And, Representative Sununu, welcome back. You were a very valued member of this committee for some time and we miss your smiling face and your great intellect as well. Mr. Lamontagne. STATEMENTS OF OVIDE LAMONTAGNE, MANCHESTER, NH; GINGER BROWN, COLUMBUS, IN; STEPHANIE FRY, INDIANAPOLIS, IN; PAT ANTENELLIS, FRAMINGTON, MA; CAROLYN NUNES, SPECIAL EDUCATION PROGRAM MANAGER, SAN DIEGO, CA; KEVIN McDOWELL, GENERAL COUNSEL, DEPARTMENT OF EDUCATION, INDIANAPOLIS, IN; AND MARCA BRISTO, CHAIR, NATIONAL COUNCIL ON DISABILITY Mr. Lamontagne. Thank you, Mr. Chairman. Mr. Burton. Incidentally, before you start, because we have so many panelists, if you could try to keep your remarks as close to 5 minutes as possible, we'd appreciate it. Mr. Lamontagne. Will do. Thank you very much, Mr. Chairman, members of the committee, committee staff, guests and fellow witnesses. First of all, thank you, Congressman Sununu, for that kind introduction. I had the pleasure of being on the campaign trail at the same time that Congressman Sununu was as an initial candidate, and we are indeed pleased and fortunate to have Congressman Sununu representing not only the State of New Hampshire but also the national interests here in Congress. I have prepared remarks which I have submitted to the committee, and I would like to stray from those remarks with your permission, Mr. Chairman, to address a couple of points. First of all, I do have experience as a former chairman of the State Board of Education of New Hampshire, working 3\1/2\ years as a volunteer, 20-hour-a-week job, basically as a volunteer, as most people do who work in the State boards, and I can tell you, Mr. Chairman, that not a day went by in my service when I did not receive a call from at least one parent every day, one parent at least calling me, pleading with me to try to do something to help them in their situation with their children. And your particular experience, Mr. Chairman, relating that even you as the chairman of the committee attending a school district IEP planning meeting, feeling that if it that's difficult for your family to achieve the services you feel is important, how much more difficult must it be for our working families, those families who have children in need of services to obtain those services. I must say that in my view the appropriate role for the Federal Government and the States is somewhat like Representative Tierney alluded to, which is that primarily the role of educating children should remain with the States. But in 1975, Mr. Chairman and members of the committee, this Congress acting then assumed for the Nation a priority, a duty that the Nation would require and encourage the States to educate every child with or without special needs--in this case with special needs--and in exchange for that imposition of duty, this Congress provided a mechanism which included funding to meet that national duty. President Bush in his State of the Union Address was quite correct in challenging us as a Nation to leave no child behind. In 1975, as a matter of public policy, this Congress tried to articulate that for our most vulnerable of children, those with special needs. The 40 percent target was never met as part of the quid pro quo, if you will, for States to elect to participate in IDEA. And it is important, I think, to understand this is an elective system. The standard that the duty to provide an adequate education, a free appropriate education to all children is not elective. The program itself is elective. And in 1995 I commissioned a task force in New Hampshire to evaluate special education, and the first question I asked the task force of citizens, educators, board members, was to answer the question, should New Hampshire continue to participate in IDEA. We decided after evaluating it that, yes, we should, for all the right reasons. And we're asking the Congress and I'm asking the Congress on behalf of the State of New Hampshire and on behalf of all State leaders in education to meet the obligation of fully funding IDEA. Now, I must also address a point which I think is a misconception about IDEA. IDEA is not a reimbursement program for services. Forty percent is not keyed to the amount of money that is spent by a State in providing educational services. Forty percent is a formula that's derived by counting the number of children who are identified with special needs times the average per-student expenditure of the State times 40 percent. It is a block grant in that sense, but it is not a reimbursement formula. And the first point that I ask the Congress to consider here is to change the funding mechanism of IDEA so that we empower people to access those services. We empower, incentivize the system to access the services on a reimbursement basis, not on a State grant basis alone. Second, we need to empower parents and put the power of the decision about where those moneys are expended in the hands of parents. If we can do it through--by amending the IDEA to include some voucher provisions, to the extent that services are available in the community outside of the regular employees of the school district, that will empower parents, and allow parents to opt-out of an IEP if there is not meaningful assessment and not meaningful results for that IEP. And last, in order to avoid continuing to divert moneys into the legal proceedings and legal process, I urge Congress to require, as an intermediate step, ombudsmen to mediate, if you will; mediators to meet with parents and school districts to resolve disputes before the due process provisions and proceedings can begin, before lawyers get involved and before those funds are diverted. The Congress has a great opportunity now to meet its obligations. I'd ask this Congress to look at both fully funding and making meaningful reforms to IDEA for our millions of children. Thank you, Mr. Chairman. [The prepared statement of Mr. Lamontagne follows:] [GRAPHIC] [TIFF OMITTED] T5592.027 [GRAPHIC] [TIFF OMITTED] T5592.028 [GRAPHIC] [TIFF OMITTED] T5592.029 [GRAPHIC] [TIFF OMITTED] T5592.030 [GRAPHIC] [TIFF OMITTED] T5592.031 [GRAPHIC] [TIFF OMITTED] T5592.032 Mr. Burton. Thank you Mr. Lamontagne. I will have some questions for you, as my colleagues will in just a few moments. We'll now recognize the Congressman from the great State of California, Mr. Cunningham, for an introduction, and thank you for being with us today. This gentleman was an ace in Vietnam, one of the great pilots that we ever had during the Vietnam War. He's a legend among the pilots in the U.S. Navy. He taught at the top gun school. In fact, he even showed Tom Cruise how to act like a pilot in that movie Top Gun, and so we'll now recognize the gentleman from California. Mr. Cunningham. Thank you, Mr. Chairman, but now I'm just an old fat guy. Mr. Chairman, I'm very honored to be able to introduce Carolyn Nunes to the committee and to you. The San Diego City School Superintendent is a man named Alan Bersin. He was a Clinton appointee. I'm Republican, but he's got my full support. I was the subcommittee chairman that rewrote IDEA. I'm now on the Appropriations Committee so I have got my heart into this area. And the reason that I'm honored to introduce Carolyn Nunes is that Alan Bersin has met with the parent groups many, many times and has had an outreach program, realizing that many of the children have been underserved within the IDEA program. That's why he put Carolyn Nunes in charge of the administration of the IDEA program for special needs of San Diego City School District, one of the largest city school districts in California. I know what's in her heart. She's been a teacher for 22 years, and now an administrator. She went into the profession to help children with special needs. That's where she wanted to teach, to make sure that no child, as Mr. Lamontagne said, that no child is left behind. But I think it's important to realize and understand from the parent groups, from the teachers in many areas, what are the limiting factors on the schools that prevent the services that Carolyn and the superintendent want to get to give to the children and to the parent groups. That's why I'm very honored to introduce Carolyn Nunes. I know what's in her heart because she's my sister-in-law. She's the sister of my wife, Dr. Nancy Cunningham, who is the director for Education of Encinitas Union School District. My whole life is filled with educators and I have two built in lobbyists and I'm very honored to introduce Carolyn Nunes. Carolyn. Mr. Burton. Welcome. You have to push the button on the mic. Ms. Nunes. Thank you, Chairman Burton, and committee members, and thank you, Congressman Cunningham. For the past 22 years I have served in San Diego City School District in the field of special education as a special day class teacher and currently as an administrator for the low incidence programs and related services for students from birth to 22. In addition, I coordinate the input for the collection of data on special education students. I appreciate the opportunity to address the committee today regarding the implementation of IDEA and the challenges in special education. The San Diego Unified School District currently serves over 142,000 students in 184 schools. Of those students, almost 16,000 have active IEPs and receive special education services. Ninety-two percent of our current budget provides direct instruction for the support of students receiving special education services. The following addresses some of our current issues, as well as our recommendations for possible solutions. Nationally we have witnessed an alarming increase in the number of students identified with autism. Families are bombarded with the latest in the new forms of treatment for autism. All who view and read this information in the media make assumptions that such services are research-based and conform to best practice. There are a variety of instructional strategies and methodologies that are available. As educators we realize that using only one instructional strategy for all students is not appropriate. Today, a multiple of agencies are funding services for students with special needs. These agencies, although funded by Federal dollars and driven by Federal legislation, are under different rules in different systems. Although these agencies have a common purpose, to provide services for students, these systems become a barrier. At times, although with good intentions, Federal laws frequently promote the system of disconnect. More emphasis must be placed in the area of research in educational approaches which will promote student achievement based upon the student's ability and level of independence. School districts are currently finding the need to retrain teachers in strategies and techniques used for students with autism. We would recommend the development of special grants for the purpose of ongoing professional development for the training of certificated and classified staff in the field of autism. Although Congress placed limitations on the recovery of attorney's fees in the 1997 IDEA reauthorization, little has been done to reduce the significant rules such fees continue to play in the decisions that school districts, and even parents, make regarding appropriate educational programs for students with disabilities. Early independent review, without all the formal requirements of a due process proceeding, may temper each side's expectations and lead to a quicker and fairer resolution. I suggest mandating school districts to participate in alternate dispute resolution in all due process proceedings and reducing reimbursement for attorney's fees proportionately for parents when they fail to participate. I believe that special education has resulted in a system driven more by the need to comply with numerous requirements of both Federal and State laws and regulations than in genuine educational needs of students with disabilities. The California Department of Education has developed a process of sanctioning school districts who do not meet the zero tolerance level of compliance with the time lines for review of annual IEPs and 3- year reviews, and the system does not allow for reporting extenuating circumstances for missed time lines. While our district has made great strides in electronic capture of information regarding the status of students receiving special education, 100 percent of compliance is difficult to achieve. At times, IEP teams are faced with breaking one regulation in order to meet another. Requests for data collection and reports by various agencies at the national, State and local level impose a strain on the district's ability to provide information in a timely manner. Data collection at the State level should allow for reporting extenuating circumstances that prevent time lines from being met. Definitions regarding placement settings, disability categories, and designated and related services should be consistent across agencies. Data repositories should be developed so that they can be accessed by any interested agency from a central location. Thresholds of compliance should reflect on the percentages of students reported. Compliance should be driven by quality and student outcomes as opposed to checklist compliance. On behalf of the San Diego City School District, we appreciate the opportunity to comment on these issues. We also hope that our comments are helpful to the committee as they continue to investigate the IDEA. Thank you. [The prepared statement of Ms. Nunes follows:] [GRAPHIC] [TIFF OMITTED] T5592.033 [GRAPHIC] [TIFF OMITTED] T5592.034 [GRAPHIC] [TIFF OMITTED] T5592.035 [GRAPHIC] [TIFF OMITTED] T5592.036 [GRAPHIC] [TIFF OMITTED] T5592.037 [GRAPHIC] [TIFF OMITTED] T5592.038 Mr. Burton. Thank you, Ms. Nunes, and we'll have some questions for you as well. We now, I think, have Congressman Pence from Indiana, one of our new Members, and a very good friend of mine. He's actually only 21 years old. That gray hair is just to make him look older, but Congressman Pence has an introduction. Welcome. Mr. Pence. Thank you, Mr. Chairman. It's an honor to be with you today and it's an honor to take a moment to introduce a distinguished fellow Hoosier from my hometown of Columbus, IN, Ginger Brown. Ginger is the proud mother of two, but she is, Mr. Chairman, the courageous mother of young Bobby Brown, age 5. And as we will hear today, Ginger fought an extraordinary fight over the last year and a half to bring the strictures of the IDEA to bear on the local school system in Columbus, IN, particularly championing the Applied Behavior Analysis Approach. I'm honored to introduce Ginger to this committee today, and I'm honored to call her a constituent. She seems to me to be a wonderful example of citizenship and, more importantly, parenthood. So I give you Bobby's mom, Ginger Brown. Mr. Burton. Ms. Brown. Congressman Pence, thank you very much. Ms. Brown. Thank you, Chairman Dan Burton, for inviting me here to speak on behalf of my son, Bobby Brown. I would like to just go over the last year of his school, which would be from August 1999 to the year 2000. When Bobby began the school year he was unable to do anything independently. He was not able to put his coat on. He was not able to brush his teeth. He sat around and he banged his head on the floor. He did hand flapping, stereotypical behavior of children with autism. I looked forward to putting him into an early childhood program, hoping I would see lots of success or at least forward motion in Bobby's advancements. As the year progressed, I only received notes from his teachers that Bobby was not making the gains. Bobby was unable to even understand the smallest of steps in order to be taught the larger steps. The teacher suggested that I seek out an independent behaviorist and have my son evaluated and try to implement a program. I sought out a behaviorist in Applied Behavior Analysis from New Jersey who designed a program for my son. I asked her to implement the program both in the home and in the school to help Bobby to be able to tolerate being in the school and being able to sit at circle time and music time and participate with his peers. When the program was designed, the teachers felt like it was not adequate and did not want to pursue it in the school. I decided to go ahead and pursue the program on my own. The school year was coming to an end, and I approached the director at the time, and explained to her what I was seeking was a one- to-one program of Applied Behavior Analysis with my son. I went ahead and hired a team of girls to work with my son. It was a 40-hour a week program. Remember, my son was not independent in any way. He was unable to use the restroom. Within 3 months he was able to be potty trained. He was able to sit for 1 hour at a table and work. He was able to relate to his sister. He was able to relate to me and to his father. Bobby continued his progress and the school year was nearing to start for the year 2000 and 2001. When the year began, I went to the school and asked the school if they would be willing to help me continue the program. I had data sheets, I had video footage and I had graphs. I took the behaviorist from New Jersey in with me and explained to them exactly what Applied Behavior Analysis was, the importance of one-to-one teaching for a child like Bobby. What the school actually told me was that unfortunately a mistake had been made in the computers in the State of Indiana and that too much money had been given to their district. They now were held accountable to repay $1 million and would not be able to educate my son. I also asked them if they could help me fill out an application to send in to the State, and they said they would do that. We filled out the application. We sent it in to the Department of Education of Indiana. I got the letter back and it made perfect logical sense to me when I read it, and I called and talked to a director who informed the reason why the application was turned down is it didn't match the IEP. There was nothing in the IEP that reinforced the needs of what Bobby was getting, that I was giving to him. When I went back to the school and explained this to them, they said that they understood Bobby was making progress. The teacher supported that he had made incredible gains since last year. He had made gains in areas that they had no way of teaching him, but still they were not going to help me out financially. They said that it was entirely too expensive for them to take on. I actually spent five meetings with the school district in IEP meetings, a total of 20 hours, trying to resolve the issue. Still, I was paying for Bobby's program. I was paying to send a trained aide in ABA into the school. I was paying for his in- home program, and I was still getting no assistance. They did finally say that they would call the Indiana Resource Center and ask for someone to come in and give a 2-day overview of what ABA was. ABA cannot be learned in 2 days. It cannot be taught to someone in just a matter of 2 days to take over and do the data sheets, fill out the graphs and report back to the head person in charge of the ABA program. Actually, what the Indiana Resource Center suggested to them was that they continue with the people that I had in place, that it was beneficial to Bobby. Still, the school denied this. I was left no option but to go ahead and continue the due process. During this time period, the directors actually switched; the one resigned, and we had a new director come into the community. The new director was a little bit more open to this, but we still went ahead with due process. But now I can say that my son has received a free, appropriate public education, but unfortunately it has cost a lot more both to the district and to myself because of having to go due process. When people ask me what I would like to see, I would like to see the schools be open-minded when parents go in and they have data sheets that show last year for 9 months my son made zero progress, but in 3 months I potty trained him. That's a hard task to do with a child with autism, but it was successful for my son. Applied Behavior Analysis is the way of the future of education with some children. I would like to see the districts have an open mind. Thank you. [The prepared statement of Ms. Brown follows:] [GRAPHIC] [TIFF OMITTED] T5592.039 [GRAPHIC] [TIFF OMITTED] T5592.040 [GRAPHIC] [TIFF OMITTED] T5592.041 [GRAPHIC] [TIFF OMITTED] T5592.042 Mr. Burton. Real briefly, can you tell us how much you personally had to expend to get those benefits? Ms. Brown. I personally spent $30,000 out of my pocket to do the ABA program for my son, and then I spent an additional $17,000 in attorney's fees. Mr. Burton. So it cost you almost $50,000. Ms. Brown. Yes, sir. Mr. Burton. I will now go to Ms. Fry. Ms. Fry, I'll introduce you. Since we don't have some good-looking young Congressman, you have to settle for one of these old fogies up here. So, Ms. Fry, you're recognized. Ms. Fry. Thank you for inviting me here to testify. My name is Stephanie Fry. Mr. Burton. Excuse me, Ms. Fry, you're one of my constituents, I understand. Ms. Fry. I believe so. Mr. Burton. Well, can I shine your shoes or anything? Ms. Fry. We'll think about it. I have three children, three boys, all born on Fridays in October. All of my children have autism. I brought pictures so everybody can see. They don't look any different from anybody else. They may act different. I don't expect any special red carpet treatment for them. All I want from a school is an education for my children. My oldest son was diagnosed in June 1991 with autism. The doctor told me, here's your diagnosis, come back and see us in 3 months. What am I supposed to do now? So I called the parent support group and I found a preschool in our community that did early childhood intervention and they took him on during this summer. Mr. Burton. Would you pull the mic a little closer so we can hear you better? Ms. Fry. He went to school for about a month and then was off a month for summer break. During the month he was off, he regressed quite significantly. He still was not speaking more than 20 words. He was not toilet trained. He could not play appropriately. He had stem behavior. There were many, many issues. The administrators at the preschool told me when he went back that fall that once he turned 3 years old they could no longer take him, but the new law had been passed that school districts were required to take a child at age 3 and teach them. So I called the local school district and I spoke to the director of special ed and she said that they had to do a psychological testing on him before he could attend their school. There was no possible way that he could go before the testing was done. And I said, well, I have a doctor's diagnosis that says my child has autism. And she said, well, he may not be autistic enough. And I'm still wondering what ``autistic enough'' is. He did go to school on his third birthday, having known no one there, did not know the teacher, did not know the students, had never been there, and for an autistic child it is a very difficult transition. I sent him to school and waited as patiently as I could for him to arrive on the big bus, just like all the other kids. And when I went to get him off the bus, he had a fat lip, a very large fat lip. And I said, what happened? And all the bus driver could tell me was he fell. I had not been called by the administrators. I had not been called by the teacher. I just got the surprise of taking him off the bus, and this was our first experience with public school. I later found out that he had been following the teacher because he knew that she was in charge, and she turned and he ran into a table, but I was just very, very concerned at that point. He did learn. He learned very, very well. He learned to comply with them, he learned to sit in circle time. He liked to listen to the songs. He did everything he was supposed to do. He was in a classroom with a teacher, two aides and eight students. We moved to Warren Township, school district in Indianapolis, in 1993. He started the preschool there. That year he was due to go to kindergarten. When the time came to place him, he had been in preschool about 2 years, and I was concerned that moving him to a regular classroom, even though he had made so many gains, it would not be enough. I was told least restrictive environment, this is what you get. So I said OK, and we put him in. They told me they had to ask the kindergarten teacher if she would accept an autistic child in her classroom before they could place him. She agreed and so he was there. She had no training in autism. The resource teacher that he had, the part- time special ed teacher did have training but was not in the classroom at all times. He did very very well in kindergarten with 18 students, 1 teacher, a part-time aide and a part-time resource teacher. He learned, and again he was moved on to first grade. This was a whole new transition because this was a whole day of school instead of half a day. He had more academic things asked of him, more patience issues asked of him. He became frustrated, sensory overload, and had many crying episodes. The teachers did not know what to do with him, and they tried peer tutors, which is regular students helping to keep him on task. He did not deal well with that. What he did was, he would sit under his desk and cry. So they would send him to the office. He spent more time in the office than he did in his classroom. I did not know what to do. I expected the school district to do what was best for my child, and they didn't. He moved on to second grade because he did learn. That year our school district started year-round classes. He moved to another school, new teachers, new special ed teachers. He did fairly well, but again the frustration issues were there. He had trouble complying with what they were asking him to do, but he learned. He still learned, despite all this. And that's one thing I'd like to say. He--through it all, the kids are able to do so much, even though we don't know the things that are in there. He was promoted to third grade. At the annual case review going into third grade, the resource teacher asked me to cut his hours back and said that he didn't need as much help as he was getting, which was 25 to 50 percent. So we're down under 25 percent of the time of a full school day that he would get help. I said OK. She said if there was any trouble it could be easily changed. That was the worst year that we had. The third grade is when they start adapting to new curriculums, extra harder work, things like that, and he could not maintain with what the other students were doing. He had acted out. They put him in a resource classroom, which is when they put all the students with learning disabilities or other disabilities in the same room, only to get a blanket service so they can qualify all their services for each person at the same time. I don't feel this is right. I have been told over the years that teacher training is not necessary. Over that whole time we have never had a teacher that's been trained in autism, a regular education teacher, and he has always been in a regular education classroom. The teachers called me to ask what I had done to cause him to be upset. They called me often to ask me things that were very, very rude. I was also told--I asked for an aide because I thought that would help--if we give you an aide we'll have to give everyone an aide. We don't need to train the teachers because we won't see another autistic child in our regular classroom for another 10 to 15 years. There were a lot of things I was told that were very, very wrong, but I didn't know that the parents had rights. I didn't know that I did not have to sign an IEP that I didn't agree with. And my son was in fourth grade before I found that out. The school district did not tell me what was available. All they'd said was, this is what we can give you, we cannot give you any more due to funding. I have two other children with autism. My youngest is in a moderate to severely handicapped classroom. He is moderately autistic. He has made great strides in the last year but is still very far behind. My middle son is Autism/Asperger Syndrome. He is in regular classroom with no support. He does extremely well. Academically he is at or above his peers. He does not need any resource help or anything else. Last year in kindergarten his teacher was very argumentative. She would call me often and ask me to come in and calm him down. He would not comply with what she asked and he understands verbal language very, very well. She would stand next to him and call me, and I could hear him in the background crying because he knew she wanted me to take him out of there. Mr. Burton. Ms. Fry, can we get on with your children when we get to questions? I have a number of questions I'd like to ask you. This was the Warren Township School System? Ms. Fry. Yes. Mr. Burton. And they're still in the Warren Township School System? Ms. Fry. Yes. Mr. Burton. OK. Can I ask you some questions after we get through some of the other witnesses? Ms. Fry. OK. Mr. Burton. Be with you in just a few moments. [The prepared statement of Ms. Fry follows:] [GRAPHIC] [TIFF OMITTED] T5592.043 [GRAPHIC] [TIFF OMITTED] T5592.044 [GRAPHIC] [TIFF OMITTED] T5592.045 [GRAPHIC] [TIFF OMITTED] T5592.046 [GRAPHIC] [TIFF OMITTED] T5592.047 [GRAPHIC] [TIFF OMITTED] T5592.048 [GRAPHIC] [TIFF OMITTED] T5592.049 [GRAPHIC] [TIFF OMITTED] T5592.050 [GRAPHIC] [TIFF OMITTED] T5592.051 [GRAPHIC] [TIFF OMITTED] T5592.052 Mr. Burton. Ms. Antenellis. Ms. Antenellis. Yes. Mr. Burton. Would you like to address the committee? Ms. Antenellis. Sure. Ms. Antenellis. First of all, because I couldn't bring him for our sanity, I brought you a picture of my son Connor. My story is probably very similar to other stories---- Mr. Burton. How old is Connor? Ms. Antenellis. Connor is 6 now. But I'd like to thank you and the committee members for inviting me here to testify. I believe that my experience as a mother of an autistic child, and now as a provider of services for autistic children, will give you information that will help you make some changes. The main reason I have come to Washington is a simple one: to encourage the special education system to provide access to Applied Behavior Analysis for young children diagnosed with autism. My story is one of a legal battle with the educational system that turned out to be the ultimate success. Depending upon whom you talk to in my town, I'm either a tireless advocate for my son or the mother from hell. My son Connor's story is very typical. He had a very normal early childhood, and at 16 to 18 months lost all his skills. He lost his eye contact, he lost his language. He started to abuse himself and gouge his eyes. At that time I was told there was a 75 percent chance he would never speak and an 85 percent chance he would be retarded, but I was determined that Connor was not going to be one of those odds. I pressured the Department of Health in our Early Intervention System to provide us with an ABA program, which they did do. In 9 months Connor made over 15 months' gain. When he started ABA he had a 7-month speech and a 10-month cognitive level and he was 27 months old. So he was 15 months behind in all levels. At the end of 9 months he had gained a minimum of 15 months in almost all areas and was able to be back in our world. If I called his name, he said ``What?'' He came to me, he was able to understand things that I asked of him, when a year before the house could burn down and he wouldn't get out, but he could hear a Cheerio drop at 50 paces. I began the transition to the school system about 6 months prior to his third birthday. It was my understanding that the school system would provide Connor with a program that would help him achieve his maximum feasible benefit, and that was Massachusetts standards at the time. I was mistaken. The school system felt it had to offer only what they deemed was an appropriate placement. It did not take into account the recommendations from the medical professionals from Children's Hospital nor the progress that he had made under his current program. They felt they knew better than anyone else what Connor needed. They did offer an integrated classroom program but it lacked the learning tools that had been so successful for Connor. He was entitled to an education that would ensure he would reach his maximum potential. That meant he needed his school program supplemented with an ABA program. Then began a 3\1/2\ month battle with the school system. As a credit to the school system, it did continue his ABA program while we negotiated services. On a personal level, it was the worst 3 months of my life. I lived in fear that they would take away the services Connor so badly needed. Without these services, Connor would regress and never make the strides he had the potential to make. I truly felt as if I was in a fight for my son's life and his future. It seemed to me as if my son had a form of cancer and ABA was the chemotherapy that would cure it. What right did the school system have to deny him the services that had proven so successful? Of course, it all boiled down to cost and not the best interest of my son. I tried to negotiate with the school system on my own but got nowhere with them. I couldn't afford to hire a lawyer but in the end, to get the services needed, I got legal representation. The battle was finally settled in mediation, one step short of a formal hearing. The school agreed to provide 12 hours of ABA, down from the 20 he was receiving. I accepted it because I knew I couldn't afford more. In total, I paid over $5,000 in legal bills. This was my own money, spent to obtain the services that my child should have had from the beginning. In addition, I supplemented out of pocket for an additional 2 years, the ABA services that the school system did not provide. When the dust finally cleared, Connor had a good program. I felt that I had done the best within my powers and financial limitations to provide what he needed. The program stayed in place for 2 years, and Connor made gains which can only now be considered phenomenal. It is clear from the evidence that the education provided works. Today, Connor is a success story. He turned 6 last month. He has defied all odds, and today he reads at a 10-year old level, has an above age level vocabulary, has no self-abuse behaviors, and has his first best friend. Remarkable for a child who had a 75 percent chance of never speaking and an 85 percent chance of being retarded. Does he still have issues? Yes, but we're working on them. Will he ever be cured of autism? No, but he will be able to function as an active and productive member of society, probably making more money than I will. I credit much of Connor's success to the hard work he has done and the constant vigilance that I keep on his program. I go to the school once a month. I watch his classroom, I watch his teachers. The minute they are out of line I'm on them. They don't have an option not to answer to me. But I also see in the system the other children in his classes don't get that. No other child in the school system diagnosed with autism, some as severe or worse than Connor, they don't get the services. And when they ask me how I got them, I said I fought for them. They have no idea how to even begin. I have never seen a child go to a school system and be offered ABA. I actually had a special education director once tell me, we provide services for early intervention now through the State of Massachusetts, and he wrote to me and said, what will my money buy me? Not what's in the best interest of the child or how can your services help me, but what will it buy me. And I think the long run of IDEA is that we either pay for these children now or we pay for them for the rest of our lives. If these children can't make the gains when they're young and they're early--and as you know, autism is not an easy disability--we will pay for them when we're long gone, and society will pay much more than the 40 percent that you talk about now. And the only sort of disheartening thing that I heard today is that 40 percent hopefully by the year 2010. Well, by 2010, Connor will be almost graduating from high school. I really hope that it will be within your power to fund that sooner so the children that are there and in the system now can get what they really need. Thank you. [The prepared statement of Ms. Antenellis follows:] [GRAPHIC] [TIFF OMITTED] T5592.053 [GRAPHIC] [TIFF OMITTED] T5592.054 [GRAPHIC] [TIFF OMITTED] T5592.055 [GRAPHIC] [TIFF OMITTED] T5592.056 Mr. Burton. Before we go to our next witness, let me just say that I agree with you, and we ought to move as fast as we possibly can, and you may rest assured that we will. And I personally apologize to every parent that has a child with a disability, because I was ignorant of the facts until it happened to me. That's one of the big problems that we face: Do we have to wait until we're hit in the face with a shovel before we realize the need? And I plead guilty to that, but we are going to do our best to rectify that. And I know Ms. Schakowsky and others feel that way as well, because you're absolutely right, if these kids who are autistic and who are disabled now, for whatever cause, if they're not helped while they can be helped, they will be a huge burden on society later on and we will pay a great deal more than we'll have to if we don't deal with it right now. Mr. McDowell. Mr. McDowell. Thank you, Mr. Chairman. And I also appreciate being sworn in today rather than being sworn at, which seems to be the experience of State agency personnel. My name is Kevin McDowell. In 1972 I was drafted into the Army. Mr. Burton. You're from the great State of Indiana. Mr. McDowell. Great State of Indiana and also the Sixth Congressional District. Mr. Burton. Yes, and I think I talked to one of your compatriots at the agency today, if I'm not mistaken. Mr. McDowell. Pardon me, sir? Mr. Burton. I think I talked to one of the people at the Department of Education today. That's where you work; is that correct? Mr. McDowell. Yes I work for Dr. Suellen Reed. I'm the general counsel for the Department of Education. Mr. Burton. Yes. Mr. McDowell. In 1972 I was drafted into the Army, that being the only lottery that I've ever won, but as I left the Army, I found myself in Fort Gordon, GA, which is near Augusta, which is the mecca for all golf. But for those who are literary-minded, that is also near Wrens, GA, the birthplace of Erskine Caldwell who wrote Tobacco Road and God's Little Acre. And there's a stretch of road that runs for 20 miles from Augusta to Aiken that's called Horse Creek Folly; has a road, but most of the roads are unimproved and the people poverty stricken. And my first teaching job was with delinquent children, extreme poverty, under a Title I program that was in place at the time. From there I have had the opportunity to come back to Indiana to teach both in institutions with students who had emotional disturbances--at that time autism was not a separate category, it was included with emotional disturbances--both in institutions and in the public schools and in the private schools. And from that time for the last 15 years--I was in private practice as an insurance defense lawyer--and the last 15 years my responsibilities have been with the Department of Education and its 28 divisions and offices, not the least of which is Special Education. As I indicated in my written testimony, during those years I have observed a number of different things, not the least of which is that parents of students with disabilities tend to go through the same stages that Dr. Elizabeth Kuebler-Ross described as those who come to grips with a terminal illness. And I hate for that to sound so ghoulish or Draconian, but you will find that is the case. And that was my observation then and it was my observation in 1985 when I found out that my own daughter had autism. It was a surprise, and thus became an odyssey that brought to bear many of the experiences I had already had dealing with families of children with significant disabilities well before that had ever occurred. That is mostly an irony. It's not the reason for what I do, because I would have done what I'm doing today anyhow. But there are a number of different things that have occurred over time, and certainly Public Law 94-142 which Mr. Chairman mentioned at the beginning, and its progeny, including the reauthorization in 1997, have been major laws that have provided services that would never have occurred at all, and it's not because there are people out there who are not well intentioned. They are. But sometimes some things do need to be done in order to benefit the whole. However, that does not mean that the law itself does not have areas that require some tinkering, for want of a better term. And, Mr. Chairman, the list you gave me was a number of different areas that you wished for me to address and I will, very quickly. I will not elaborate upon the written testimony I gave you, but it does serve as the basis for some of the comments I do have today, including addressing your concern about the empirical data that needs to be collected, which I also notice that Patty Guard will be later testifying about what efforts there are in this regard. To go through the list of questions that were posed to me, you want to know if schools are following Federal laws and providing a free and appropriate public education. There are some things that I will bring to your attention now. I'm not going to list every single thing that I see in my office that prevents this from working as it should, because to do so would require me to put all of my ``begs in one ask-it.'' And I think maybe it might be a better situation that later on as you move into more specific areas, my office would be more than happy to provide you an abundant amount of information regarding all these different issues, including the legal analyses in transit we identify that's on our Web site, which is also a part of the written testimony that I gave you, some things that are occurring that are preventing parents from working together with schools, things you would not imagine. For example, a number of schools enter into collective bargaining agreements that restrict the meeting of IEP teams to contract hours. That means that if a parent wants to have an IEP team meeting, whatever it may be called from State to State, they can only meet during contract hours, not before and not after. Makes no difference if you're a single parent that has a job and if you miss one more time you're going to lose your job. These IEP meetings occur right now, and I'm sure that some of the parents can tell you they have had those experiences. Some of the administrators have likewise had those. We don't know those occur until they come to us. Other provisions in the collective bargaining agreements restrict who can make decisions about grade placement. Well, that's an IEP team decision. That raises an issue. Some give it solely to the student's teacher. And you also have the other problems that have occurred in those areas and that we heard one today about the kindergarten teacher. The kindergarten teacher has to agree to take a student? You know, that does-- unfortunately, that sounded like an Indiana case, and we actually have had some situations where when we found them out we have corrected them. That is not how it works. You don't ask someone whether or not you take a student into your classroom in that stint; but on the other hand, that teacher needs to have specific training, not just in autism, because autism's not a very good descriptor. You have to have training in how autism is manifested in that student. That is not a good descriptive. In fact using the term ``autism'' is not. And that's why in our rules implementing them under disorder, to cover them all, so that schools and parents will make decisions based upon the need for educational services, because there are some conditions that adversely impact educational performance; because if we just use the term ``autism,'' the student with Asperger syndrome down here is not under autism as that's defined in the DSM-IV. It's not. And so you get this problem; school officials say, well, it's not autism because it's not in the DSM-IV, therefore, they don't need services. Not right. And we've told schools before that when we talk about educational performance, and I give 35 to 40 different presentations in Indiana alone every year to all these various groups, there's a number of things I stress to them. Educational or academic performance is not the only concern. In Western culture we certainly prize academic performance, but we prize social adeptness more than we do academic performance. And that may sound strange. I've been teaching for 27 years, and those who have taught and those who have observed know that if you're socially adept, a multitude of sins and transgressions will be forgiven. But if you have ineptness, that sets you apart, no matter how gifted you are in other areas. So it's not just academics. That's not the sole determiner. As far as legal costs involved in resolving disputes and who pays those fees, I think you heard from Mrs. Brown today. What she described was our extraordinary funding system that we created in Indiana where we will wrap services around a student so they don't have to go to residential facilities; but the school has to demonstrate to the State that there is educational justification for that service. That educational justification is in the student's individualized education program, the IEP. They didn't put it in Mrs. Brown's IEP. And what happens, we wrote our rules in such a way as to say, Schools, if you don't put it in your IEP, you may be responsible for the cost of that service. You need to justify it. That's born out of a class action lawsuit that schools initiated against us--unfortunately, litigation is one of the things that I have to do--so we made sure that we put that in there so that we don't have people who are trying to pass services along that they don't agree with. But rather than discussing that with the parents, they try to pass it along to the State and then make the State look like a bad guy, which is pretty much what happened in Mrs. Brown's case. She can certainly give you her own rendition of it. As far as attorneys' fees, the attorneys' fees provision in IDEA is not really encouraging a lot of attorneys to go into this area. As a result, parents do not have available to them competent counsel who can help them. I realize a lot of people say, maybe we should keep the attorneys out. I'll tell you right now, as an attorney who represents a State agency--and we get involved in these hearings a lot--I would much rather have the school and the parent being represented by counsel who understands the law. But unfortunately the way the funding has been set up over the years, protector advocacy, LSO and a lot of the other services like that cannot handle these cases anymore. As a result, they really are not available to parents, competent counsel. If you have competent counsel, these things typically don't go to hearings. Mr. Burton. Mr. McDowell, I don't know how many questions the staff has sent to you. Mr. McDowell. They sent me two pages full of questions. Mr. Burton. Did they? Were they answered in your statement? Mr. McDowell. Not all of them, because I needed to know what data was sent to you from our Division of Special Education. For that--we coordinated that together. I realize that I've gone over time. Mr. Burton. That's OK. Could we do this? Could we go to Ms. Bristo? And the questions that you think are relevant and we need to talk about--and we will be asking you questions in just a few moments--maybe we could get back to that. Mr. McDowell. Sure. Yes, sir. [The prepared statement of Mr. McDowell follows:] [GRAPHIC] [TIFF OMITTED] T5592.057 [GRAPHIC] [TIFF OMITTED] T5592.058 [GRAPHIC] [TIFF OMITTED] T5592.059 [GRAPHIC] [TIFF OMITTED] T5592.060 [GRAPHIC] [TIFF OMITTED] T5592.061 [GRAPHIC] [TIFF OMITTED] T5592.062 [GRAPHIC] [TIFF OMITTED] T5592.063 [GRAPHIC] [TIFF OMITTED] T5592.064 [GRAPHIC] [TIFF OMITTED] T5592.065 Mr. Burton. Ms. Bristo. Ms. Bristo. Good afternoon, Chairman Burton and the distinguished members of the committee. Thank you very much for inviting NCD, the National Council on Disability, to participate in this important hearing. As you know, the National Council on Disability is charged to provide policy guidance and research support to Congress and the White House about Federal statutes and programs pertaining to people with disabilities. Before 1975, the educational needs of more than 8 million students with disabilities were not being met. Since 1975, when IDEA was passed, the doors have been opened to untold numbers of students with special education needs in America. However, over the years, parents have told us, and we have found, that the promise of IDEA is not being fulfilled, and too often parents and families bear an undue burden of enforcing IDEA. We were delighted last night to hear President Bush reaffirm his commitments to the New Freedom Initiative and to ``leave no child behind.'' Taken together, they represent a new opportunity to improve the implementation of this important civil rights legislation. We agree with our President that increased funding and enhanced accountability by our public schools are two critical elements to ensuring that no child will be left behind, including the 6 million students served through IDEA. It saddens us to tell you that NCD's research embodied in our report, ``Back to School on Civil Rights,'' which I will leave for the record, indicates that all 50 States were out of compliance to varying degrees with the main provisions of IDEA. It is also troubling to report to you that there were no serious consequences for continued and persistent noncompliance with IDEA. All too often the burden of enforcement rests on the shoulders of parents. NCD believes that preventing discrimination and ensuring educational equality of opportunity is an appropriate role of our Federal Government. It is time to put that responsibility back to the Federal Government in upholding the constitutional guarantees afforded to millions of children with disabilities. A complete copy of our report has been entered into the record. I would just like to summarize a few key findings and a few key recommendations. Ninety percent of the States had failed to ensure compliance in the category of general supervision where States are expected to hold local school districts accountable; 80 percent of States failed to ensure compliance with the law's free appropriate public education requirements; and 72 percent of the States failed to ensure compliance with the placement in the least restrictive requirements of IDEA. NCD made a variety of recommendations in our report. I'm only going to point on a few priorities here today. First, the Departments of Education and Justice should develop national compliance standards with enforcement triggers and mechanisms and with involvement of stakeholders. Second, Congress should authorize and fund the Department of Justice to independently investigate and litigate IDEA cases. Third, increases in IDEA funding should include portions to build enforcement complaint handling and technical assistance to ensure top to bottom accountability. Congress crafted a statute in 1975 that, if faithfully implemented, will consistently produce quality outcomes for students with disabilities. We firmly believe that if IEPs are based on the unique needs of students, if instruction is individually designed, if IEPs are faithfully implemented, if the least restrictive environment requirements are followed, and if there is failure to comply with IDEA that there will be real consequences, students will achieve quality outcomes while enjoying maximum independence in interactions with their nondisabled peers. Compliance with these IDEA requirements is a sufficient condition for quality outcomes. Funding and accountability are interconnected parts of the solution. Improvement in the implementation of IDEA will take the concerted efforts of parents, advocates, State and local governments and leaders such as those conducting this important congressional hearing. I want to express our deep appreciation of the important work we are engaged in here today. And to the chairman, to welcome you on board for the important journey of opening opportunities for people with disabilities. Thank you. [The prepared statement of Ms. Bristo follows:] [GRAPHIC] [TIFF OMITTED] T5592.066 [GRAPHIC] [TIFF OMITTED] T5592.067 [GRAPHIC] [TIFF OMITTED] T5592.068 [GRAPHIC] [TIFF OMITTED] T5592.069 [GRAPHIC] [TIFF OMITTED] T5592.070 [GRAPHIC] [TIFF OMITTED] T5592.071 [GRAPHIC] [TIFF OMITTED] T5592.072 Mr. Burton. Thank you very much. And I'm sorry I'm a little late getting to the starting line. Let me just start off the questioning by asking the parents of children who are autistic, if we could, at what age did you notice your children were autistic? Let's start with you, Ms. Brown, real quickly. Ms. Brown. I noticed my son was autistic at 18 months, and he was legally diagnosed at 2 years and 4 months. Mr. Burton. OK, 18 months. Ms. Fry, when did you notice your children became---- Ms. Fry. They showed signs at birth, all of them. Mr. Burton. All at birth. And Ms. Antenellis. Ms. Antenellis. Connor was 18 months. Mr. Burton. 18 months. And I guess you're the parents. Let me just ask you those of you who noticed the signs of autism at 18 months, had you had any kind of inoculations of the children in close proximity of the time that you noticed them to be autistic? Mr. Brown. Yes, I did. Mr. Burton. How close in proximity? Ms. Brown. I started noticing a difference at 12 months with the DPT, and 18 months is what I considered to be the final blow with the MMR. Mr. Burton. Ms. Antenellis. Ms. Antenellis. Same thing. He started to decline around 16 months, right after his shots. Mr. Burton. Which shots were they? Ms. Antenellis. I think it was MMR, but I can't say that was it, because it was a very slow decline. Mr. Burton. Was this just the one shot, or did you have a series? Ms. Antenellis. We had all the shots that were required by law because that's what they told me I should do up until 18 months. He had whatever shots there were at 18 months also, and he has not been vaccinated since. Mr. Burton. I was just curious about that. I guess this is a general question for all of you, and we'll start with you Mr. Lamontagne. Could you give us the top two or three things that you think should be done by the Congress or by the Justice Department to make sure that children who have these disabilities are taken care of properly? And we're going to write these down because we're going to try to pursue these through the Congress, at least I am, and I think my colleagues will. Mr. Lamontagne. I think the first and obvious one is to fully fund the Congress' commitment to IDEA; second, to incentivize the delivery of service by converting the funding mechanism from a pure block grant--I'll call it that for a lack of a better term--to a reimbursement-for-services program; and third is to shift the model from a bureaucratic one to a delivery-of-services model, which would mean having support services for parents at the school district level, including an ombudsman in the event of a disagreement between the school district and parents. Mr. Burton. So you're saying an ombudsman would solve the problem hopefully before there was any legal action? Mr. Lamontagne. Precisely. An ombudsman whose charge is to be a problem solver, not simply an advocate for one side or the other. Mr. Burton. Ms. Brown. Oh, Ms. Bristo has to leave at what time? Ms. Bristo. I need to leave at about 25 of. Mr. Burton. Why don't we go to you next, and then we'll come back to Ms. Brown. Ms. Bristo. The main message we have for you is what I reported to you today: Enforce the existing law. We have heard from parents all around the country that the problem isn't with the law; it's for the failure of any consequences to occur. In the course of our evaluation, we found that, for example, the Department of Education had only withheld funds once in the entire history of the law. We believe that as long as noncompliance is rewarded with continued funding, or no other real action to create improvements, we perpetuate the problem. Mr. Burton. Let's take the State of Indiana for instance; I talked with the people that were charged with the responsibility of making sure the law was followed regarding IDEA. They said when they were contacted by parents like my daughter, who were having a problem with the school, that they would get a hold of the local person in that particular county and that they would pursue it and tell the school if they didn't comply--or the school district, if they didn't comply-- the funds would be withdrawn. Is that what you're talking about? Ms. Bristo. Yes. Mr. Burton. So there is incentive for them to comply? Ms. Bristo. I would direct you to the substance of our report which looks at seven priorities, including at the State level, so you could take a look at your own State. I am happy to say that the Department of Education has recently begun a process to improve their monitoring mechanism and the National Council is encouraged by that; we believe that's a real step in the right direction. But we really believe that at the heart of this is putting too much of the burden for our civil rights on the shoulders of parents who are working very, very hard over time just to provide the basic services that other kids often take for granted. Mr. Burton. OK. Ms. Brown. Ms. Brown. I would like to see the schools held accountable, especially in a situation when the graphs and data and video footage has been presented for them, and how they could continue to deny a program for a child who has made progress under that specific program. The other thing I can only offer is that anyone who would be brought in as a neutral party to help supervise the IEP meetings and the school before parents have to go--due process, not be paid by the State, somehow the Federal Government is involved in that. Mr. Burton. If it was an ombudsman, no matter who paid them, they're supposed to be nonpartisan. But you think they would be if they were paid by the State? Ms. Brown. Right. The reason why I say that is because also this past year I attended a seminar, and at that seminar I saw many school officials in my district. The closing statement of that seminar was, ``The problem here is, parents who have children with autism want a Cadillac; and I am here to tell you all you have to offer is a Chevy.'' Mr. Burton. Who made that statement? Ms. Brown. The conference I attended was Melinda Baird, I believe is how you pronounce her last name. Mr. Burton. Oh, she's going to be a witness here. We will ask her about that in a few minutes. Ms. Schakowsky, why don't I let you have some time, and I will get back to these folks. Ms. Schakowsky. Thank you, Mr. Chairman. Pretty much everything I know about disability issues and disability rights I've learned from Marca Bristo, and today you can continue my education if I could ask you a few questions. I wanted to ask if you thought the requirements for regular teacher certification should include training on special ed. Ms. Bristo. Absolutely. Increasingly, we're learning that the more we can educate all teachers for the diverse Nation that we are in, including people for whom English is a second language, people with disabilities, people in rural areas, the better educated our children would be. More and more of our disabled children are in mainstream classrooms, and we believe that the recruitment efforts that the First Lady will be undertaking, it's important to target those as well as enhance the requirements for certification to include more than just the basic Special Ed 101 training that currently is the case. Ms. Schakowsky. Are we providing services across the board equally or are some children with disabilities getting better results or access to IDEA than others? Ms. Bristo. The National Council looks at disability from a cross-disability perspective, so I will situate my comment in that context. I think you have heard from the parents here today, the children who received the best educational services under IDEA are the ones whose parents were lucky enough to find out what the law was, who had access to other people to help them through the maze, and if all else didn't work, had the ability to retain legal counsel. Now that's a lot to ask of our parents. Those people stand a much better chance of getting good results for their kids. And to that end we believe that there are existing mechanisms that Congress could support further than they have. The parent training centers, a national network to provide technical assistance to parents to help them understand the rules and regs and what to do when disability affects their lives, we believe is a good place to start. But in our efforts to reduce litigation, it's important to note that litigation is a really important part of the repertoire of tools. In those instances where the courts have taken some cases, we have some models of enforcement that we would be well served to look at. My own State of Illinois right now, is operating under a court order to implement the least restrictive environment aspects of the law with the same kind of enforcement triggers and mechanisms and standards that the National Council is calling for; and we're seeing considerable improvements. Ms. Schakowsky. We've heard testimony today about the costs of attorneys. Are there low-cost special education attorneys available to represent parents anywhere? Ms. Bristo. Again, no. As you probably can ask and have the parents here speak to, not only are there not a cadre of well- funded and well-educated parents, there is also just a dearth of people who are really knowledgeable in this area of law. And increasingly, as people decide whether or not they are going to take these cases, the parents also have to prepare themselves many times for multi years of helping to front those legal expenses until the attorneys' fees kick in. A lot of people fall by the wayside before then. They simply give up. And I think we have to ask ourselves the question, in those instances when it gets just too burdensome to enforce the law for your child, is it not the children whom we are leaving behind? Ms. Schakowsky. And short of attorneys, are there not lay advocates or people who can help the parents, give them information about what their rights are and help them run their way through the system? Ms. Bristo. Yes, as I said, the parents' training networks, the independent living centers, the protection and advocacy programs; but again, often these organizations are stressed with an overwhelming number of requests for information, and more needs to be done in this important area. Ms. Schakowsky. I really appreciate the real testimony of real-life people and the kind of struggles that you're going through. And there are obvious holes that we have got to fill so that the burden is somewhat lifted and you can provide exactly what your children need; and I certainly pledge my support for that. Thank you, Mr. Chairman. Mr. Barr [presiding]. The time of the gentlelady from Illinois has expired. The Chair recognizes the gentleman from Florida, Mr. Weldon. Mr. Weldon. Thank you. I have a question which I guess I would like to direct to some of the education professionals we have here on the panel. IDEA was passed, I guess, 20 or 25 years ago, and there are a lot of people who are arguing that the incidence of autism began to increase significantly in our population. And a lot of times we say ``disability,'' and I think when they hear that, they're thinking the whole gambit of disabilities--cerebral palsy, mental retardation, etc.; but how much of what we're struggling with or dealing with is actually the possible increase--significant increase of autism, or are you seeing significant increases in all disability categories? Ms. Nunes. What we're seeing is--to answer your question in two components, we definitely are seeing an increase of students identified with autism. We are also seeing--I will speak to San Diego particularly. We are also seeing an increase in other areas, as well. As our medical profession achieves greater ability to help children who are premature, frequently these children will end up with some disabilities that we need to take care of in the education profession. So it is across the board, but the increase of autism is phenomenal. When I'm addressing issues regarding IDEA, though, from an educational point of view, I'm looking across all disabilities. Mr. Weldon. So if I understand you correctly, you're seeing everything increase, but you think autism is increasing more than the others? Ms. Nunes. At a more rapid rate, yes? Mr. Weldon. Does anybody disagree with that? Mr. McDowell. Yes, Representative. I would not disagree with that. Certainly that experience is being borne out across the country. There are some reasons for it, but no one knows all the reasons for it. One of the reasons we see the increased instances is because only comparatively recently did the Federal guidelines even mention it as a separate category; before, it was listed with emotional disturbance or emotional handicaps. In 1988, we created our own category for special education; we didn't wait for the Federal law to do it. So our reporting on the incidence of autism as an educational diagnosis, as opposed to a medical one, began in 1988, so we have data from that time. That's one of the reasons. The other ones, better identification, the refinement in mental health professionals on how they've been able to identify it. We don't know if they simply went undiagnosed or if there is some sort of an epidemic. I don't think they all went undiagnosed. There's no one who can explain why, other than it is a phenomenon that has occurred. Mr. Weldon. How much of your resources are expended dealing--and I realize you're just--I'm asking you to shoot from the hip and make estimations on dealing with emotional and behavorial problems associated with the disabilities that you're dealing with; is that a significant component? The impression I get in looking at a lot of these cases is that the pure educational components--in other words, having a teacher who knows how to teach subjects to a child with a disability--is a relatively--in many of these cases, a relatively narrow component of what you're dealing with and that a huge amount of the associated costs of teaching of educating these kids under the provisions of the act are related to things like physical therapy and behavioral therapy. I'm interested in that mainly because we call it the Individuals With Disabilities Education Act because we want these kids to get an education. And the costs are proving to be much higher than anybody estimated, and the reason for it is because of these associated, ancillary issues that you have to bring into play; and I think it's important. If we're going to sell to the Congress, our colleagues, why we have to begin to pony up significantly more money to address the issue. Mr. McDowell. Representative, at the time in question that was one of the major issues that the chairman asked us to address. I can say when Congress reauthorized IDEA at section 1418 and 1474, Congress did ask for a study because you have a number of these competing interests who say this is drawing money away from that resource, you are robbing Peter to pay Paul. No one can refute that or support that. For that reason, the Office of Special Education Programs within USDOE has contracted with the Center for Special Education Finance of the American Institutes for Research, and they are presently involved in conducting this massive national study, of which Indiana is a part; and we have also opted to outlay additional money--$800,000 in fact--in order to get a State-specific study for Indiana that would break it down by exceptionality area to give student, building and district types of data to show what those expenses are in eight major areas. Unfortunately, the preliminary data tabulation will not be available until April 30 of this year, and the final report is due out October 31 of this year. And I am sure that Patty Guard can give you more information on that other than, we are involved in this. The type of data that they have requested is extraordinary, and the eight questions that they are prepared to answer cover all the questions that Congress has raised about where is this money going, what is it doing, is it really affecting other programs; and that's the type of information that this report is to generate. Mr. Weldon. I have just one other question if the chairman will indulge me and I realize my time has expired. One of the reasons you can, if you decide you want to go out to dinner, you can choose from a lot of good restaurants in most American towns, is because you have money in your pocket and everybody wants your money. One of the reasons you couldn't get a decent meal in the Soviet Union is, they had a different system obviously. There have been some people who have proposed, and I guess this is a question I'd really like to direct more to the parents: Should we really be thinking outside of the box, and instead of putting more money into the system, empowering parents by giving them the resources so they can go out and shop in their community to find the best environment for their kids? The reason I say this is, when I look through the e-mails from the State of Florida, from parents who have struggled in this area, some of them say they encountered very willing and cooperative teachers and school administrators that wanted to make a difference; but one of the themes you see over and over again is sort of a lack of customer friendliness to dealing with the problems that they are facing as parents. Your thoughts? Would you rather have the money so that you can shop around amongst various public and private institutions that are designed to teach kids with disabilities, or would you rather just see us put more money into the existing system--in other words, a so-called ``voucher.'' It's a dirty word, I realize, and nobody likes that term; it's been so demonized. That's really what I'm getting at. Ms. Antenellis. I think I could answer a little bit of that from a parent viewpoint. I think, No. 1--if there were standardized good programs out there, I think that is an option we would like, but in many cases my school was forced by me to put a program in. They had nothing, they had absolutely nothing, so I don't think we have a lot of restaurants to go to. Mr. Weldon. Well, there's no marketplace because there are no customers. Ms. Antenellis. But I also, second, think that you mentioned the medical end of it. We have a society where it is all forced upon the school system. Particularly with the disability of autism, no medical coverage provides services. I cannot get speech, I cannot get OT, I cannot get PET for my child because he has a developmental disability and our health insurance won't cover it. So it falls--it's incumbent to have the school system do it. That is the only access he has to the service. So there may be some definite medical issues that need to be addressed, but the health insurance piece has fallen back. Even in my town when we apply for Medicaid for our special ed kids, it doesn't go to the special education department; it gets kicked back into the town fund. So it is not supporting special education. It goes right back into our town's general fund, not to pay the specific needs of the children that they're billing for. Ms. Nunes. If I could continue on that conversation, when you were asking about the physical therapy and the related services, one of the increases that we saw was that as insurance stopped accepting students or providing services it fell upon the district or the school districts to then provide those services as a related service. And our definition is to provide access to the general education or to the educational environment. So, yes, there is always a domino effect when one piece of legislation or one decision is made that it will then roll back to usually the education department, to usually fill in. Mr. Weldon. Thank you very much. Mr. Burton [presiding]. Do you have some questions, and then we will go to my colleagues from California. Mrs. Davis. Thank you, Mr. Chairman. I'm not sure I have so much a question as I do a comment, but it sort of plays on what Representative Weldon said, that we don't have the marketplace; and maybe the reason for that is, I'm not sure that the parents know their rights. And I wish I had Ms. Antenellis back when my 24-year-old was 12 years old, and I had a case where the pediatrician wrote a prescription to the school to test my child for a learning disability. But he looked normal, acted normal, and the school said he's just lazy and a daydreamer. He was not tested. They refused to test. I didn't know I had that right. That's my concern: Are we getting the cooperation? I'm hearing that now. I know that was 12 years ago with my son, I hear that now in my district that the school, the administration--I don't know if it's the teachers or where it's coming from--are not cooperating with the parents, not wanting to give them the information or even tell them what their rights are. My concern there is, is it because we're not funding? Is that the administration's and the bureaucracy's problem that they don't have the money, so therefore they don't want to tell the parents that they have the right because it would cost more money? We had a situation in one district where the school went outside of the county attorney and hired an attorney, spent $200,000 to fight a parent; and the parent spent, like Mrs. Brown did, a lot of money and won. But by the same token, we wasted $200,000 of taxpayers' money; and we have a problem, and I'm not sure how to fix it. And I'm open for suggestions. Mr. Lamontagne. I will just make the observation that I would wholeheartedly agree that simply fully funding IDEA is not the answer. It's fully funding IDEA, whatever that means under a reformed model, that creates more power in the hands of parents and creates more of a choice--a bottom-up, if you will, demand. That means an educated parent force, certainly. That means a system that looks to deliver services, not resist giving service. That also means removing what inevitably becomes sort of a battle of dueling agencies when you have social service agencies and educational agencies all competing for a limited resource of money, because they are in fact naturally antagonistic in this situation, much like you've alluded to, Representative. My wife and I--and she's here with my children--we've been foster parents for 12 years of a special needs child, and we've battled this on his behalf to try to deal with where the responsibility should lay, and lie. And I think it is very important the funding mechanism tries to wrap in, if you will, a package that is going to ultimately be paid by government, a package to deliver a full array of services to help children not only learn but be able to receive the services they need as they progress so they can become members of society. But to remove it now, which is a top-down bureaucratic system that I think kills, if you will, the ability of parents, that discourages and is a disincentive for parents to go out into the marketplace to look at opportunities. And there is no market out there to try to educate parents to find what is available for them. I would also say sitting here today, thank God for the mothers and fathers from hell, who have worked so hard for their children. Mr. McDowell. If I may add to the comments, I don't wish to leave the impression that school people are awful people. They're really not. When I speak to them, I remind them that even though this may be the third or fourth IEP team meeting you have today, this is the parent's first; and never forget that this is their first and don't rush them through it. Be considerate. Let them talk. Let them be a member. Don't sit down there and start dominating it because it's time sensitive. If you think about it, you have to constantly remind yourself, because having been there--I've been in thousands of IEP team meetings, and I have to remind myself of that too. Because I'll say, it's 4 o'clock, it's Mrs. Brown--it's just generic, not this Mrs. Brown--Mrs. Brown is coming in, and with luck I can get out of here by 5, and I can still make it and pick up so-and-so at 5:30. That is not an uncommon thing to occur. However, there are other things that are embedded in the idea that are having unfortunate results. One is, Congress put in a mediation part, trying to encourage mediation, but put a section in there that allows the school to essentially punish a parent who doesn't want to go to mediation by forcing them to talk to somebody about all the wonders of mediation, and if they only understood it, they would go to it. Well that's punitive, and it's off-putting. Other things embedded in there are simply the use of the term ``regular education,'' it's all throughout the IDEA, and that creates this polarization in schools between regular education teachers and special education teachers and that does not help. There is no such licensing pattern for regular education. My recommendation is, change it to ``general education'' because a child with a disability or a child without a disability is part of the school community and a teacher is a teacher is a teacher. And I can guarantee you, as I sit here right now with 27 years of teaching, I don't think anybody here is going to deny the fact that there is that polarization in schools. We're regular educators. That's a special ed problem. Mr. Burton. Any further questions, Mrs. Davis? Mrs. Davis. No. Mr. Burton. I will now yield to Mr. Cunningham from California. Let me say, before we do that, we probably do need to refine the law; and I think you have already worked on that in the past, Duke, you've worked on refining the law in the past, haven't you? Mr. Cunningham. Yeah, but what I put in there didn't come out of the White House. Mr. Burton. But the point is, what we want to get from you today are recommendations on changes in the current statutes that will perfect it and make it more user friendly for the parents, so they have don't have to go through these adversarial programs with the schools. And so I really mean what I said earlier: We want your recommendations. We want your input. We want your suggestions so we can draft some legislation that we can present to the Congress to try to correct these things, so the parents won't have to go through these things that these ladies and my daughter has. Representative Cunningham. Mr. Cunningham. Thank you, Chairman Burton. First of all, I guess I have to do a disclaimer. I'm not on this committee. And none of my thought would be going toward the committee, but I mentioned, both my wife and sister-in-law are both educators, but I was also a teacher and a coach, both in high school and college level, and dean of a college. And I also sit on the Appropriations Committee. I make the decisions whether IDEA gets more money or not, or cut. No one, like Chairman Burton, when you walk out of my office, you have no doubt where I stand. I don't tell you one thing and come back with another, and I'm very frank. On the Appropriations Committee, I support increased medical research. Is it shots that are causing it at the 18- month or 2-year period? Is it genetic? Is a genome program going to help? And I think that's hopeful--maybe not to your children right now, but hopefully, we can help in the future in this whole area. And not just with autistic children, but across the board. I also support, I think, that our colleges should have basic instruction courses, not just the IEP or not just the credentialed teachers in special education, but all teachers to have increased courses. I think there ought to be funding for it. I think that ought to be one of your recommendations. Mr. McDowell. It is. Mr. Cunningham. I think both the schools and the Eisenhower grants that we put not just for what you call ``normal education'' or what the actual term should be, but those teachers should also receive an upgrade in the law as well as what the services are, not just credentialed people. When I first came here, there was 6 percent funding for IDEA. We've more than doubled that. And I think President Bush, when he talks about focusing some of the things that we are looking at--for example, the money going directly to the school and giving the parents the teachers and the community the ability to direct those dollars instead of Washington, I think that helps your cause because more money can be used for IDEA. A factor with an Education IRA to where you can set up $2,000 aside for that child the day they're born and when they're 10 years old it's not $20,000; that's over $48,000 with compound interest. You can use that without penalty for a special education child or save it for later on. What I don't support, the increase of IDEA money, I have witnessed one child in the State of California is receiving $150,000 a year to teach that child. I think that is unreasonable; and it hurts you and it also hurts the school. On the committee--I was co-chairman of the D.C. Committee-- I capped lawyer fees in Washington, DC. I saved $24 million. Did I put it in a general fund? No. I went out--and like you're talking about, you didn't have trained teachers--I trained 33 special educations teachers that went into the classroom with aides to better teach and train you. I support that kind. But I don't want to increase it to 40 percent and see it going to trial lawyers. I want the money to go to students and their needs. And one of things I would like to ask Mrs. Nunes, my sister in law, she talked to me about zero tolerance. I think you need to know why. The schools aren't bad. I've seen her cry when a child was underserved, when she was a teacher and she was fighting for those children. But I know on the other side the zero tolerance that we have, and I would like her to just explain in plain words why this is hurting, just because of the paperwork, and it's becoming more of a check in the box than the administrators and teachers being able to go down to help the kids. I have seen teachers brutalized in the courtroom where they're quitting the service. You are losing good special education teachers just because of the paperwork and the pressure and stuff. I think you want to keep them there, the trained ones. Ms. Nunes. The component of the law that requires no IEP or triennial to be overdue, as I stated in the testimony, does not provide us with an opportunity, as we were reporting, to give feedback that there might be some extenuating circumstances that is a reason why the IEP is overdue. The parents may have requested that the IEP be held at a later date due to some family emergency. We may have a dispute in the assessment plan so we are not able to meet that time line. The reality of what happens is that reports go in and then they come back with sanction letters for us to then remediate or fix those situations, and what we end up becoming is a system of report generation as opposed to looking at the student and the student needs. And that's a concern to us. If I could just take my step here and answer your question, Mr. Chairman, about the issues that we would like to address as far as recommendations, when we talk about the funding, again we would like to stress the educational research. I think that my concern about hearing vouchers is that now you have agencies potentially that there's not a standard; that the educational approach isn't appropriate for the child, there needs to be some type of standard that says, OK, it's time to move on, we need to look at something different. As I stated before, there is not just one educational approach for students with autism or for any other students. For example, students with autism display a wide variety of ranges of ability levels. You may have one student with a diagnosis of autism who does not relate well in group settings, but does very well on an individual basis, as I think we have heard some of the examples here. However, I have personally been in the classroom with students and taught students with the diagnosis of autism for whom being in an individualized instruction programming such as called out in some strategies is not the best educational environment; and those students learn better in a group environment, in small groups. So I think that my concern is, we take into account the educational strategies and train teachers. When we talk about the higher education institutions, I applaud Mrs. Bush in going out and championing that cause for us. What I would like to see are competencies that higher education institutions have to provide more than just an awareness level of the strategies and techniques that are needed for all students and to really be able to demonstrate the knowledge. And that's the struggle that we're having right now, and that's the recommendation. Mr. Burton. Let me say, first of all, the panel has been very helpful, and we will take suggestions to heart. If there are further suggestions, real quickly, we'd like to have them because we want to move on to the next panel. But I would like to say this, the people who are in the profession of teaching and the experts that help with special needs children really do know what they're talking about, and they can be very helpful; but you also have to consider the parents, because they live with the child 24 hours a day, or at least when they're not in school, and on weekends and everything else. And if a parent feels like they are not getting the proper treatment or education from the system, they ought to have a very big say. That's why the idea that some form of choice for a parent ought to be there. So if the school isn't doing the job, even though they have the talent to do it, or because they don't want to do it or they have don't want to devote enough time for the child, which is the case of my grandson, then the parent ought to be able to make sure that child gets the proper attention. I always believed when there is an incentive to do things, people do it better. If a car salesman, for instance, knows that he will get a bonus if he sells 10 cars instead of 5, he's going to work a little harder. I believe in the educational field if a teacher or a school system is going to benefit because they're doing a little more outstanding job than the sister school, they're going to try harder. That's one of the reasons why a lot of us feel like there should be some competition in education instead of sticking a child, or a special needs child, into one facility that is not doing a job, when down the street, or a ways away, there is another school doing an outstanding job where they can put the child. If the parent has a choice, they're going to say, hey, I'm going to put my child where he or she is going to get the best education, the best special needs education, whatever it is. If the school that is not performing doesn't do it, they're going to be without students; and pretty soon they will get the message, they are all leaving, we'd better start doing our job a little bit better, or pretty soon we will be without students and maybe without a job. So that's one of the arguments, one of the major arguments. So I don't know whether it's vouchers or whether it's some kind of choice, but parents ought to be able to have a bigger say because some person who has more of a bureaucratic tendency says, we really think your child ought to get 30 minutes a week instead of 4 hours or 2 hours a week and the parent knows the child is not progressing. Yes, Ms. Antenellis. Ms. Antenellis. I want to take my moment in the sun to just give you my 2 cents worth of what I think you need to do. In addition to the teachers, most autistic children have aides in the classroom. These aides are usually just moms, who are probably the best people to deal with them, but they don't have the training, the training does not filter down to the frontline staff, the recess monitor, the aide, the person in the gym; so when the autistic child has a problem, they can't handle it. They don't get paid much. They don't get the teacher's salary, and they don't get the teacher training. So I think that the paraprofessionals that work with these children in the school systems also need to be trained and that needs to be included in the budget somehow. The other thing is, I think school systems that are constantly in violation of children's rights should be taken to task and be made to be accountable. Even if they have an IEP, if they're not providing what's in the IEP, they should be taken to task. If that school system is constantly going to State hearings and being found against, they should be taken to task. There is no accountability in the school systems in the States right now. Yes, they go back down again and then 2 weeks later, they're not providing the speech. And the parent has to go all the way through the process again to get the speech provided. There's no accountability, and they need to be held accountable. Mr. Burton. I can tell you, this morning I talked to the people in State of Indiana in the special education area, and they assured me if parents bring to their attention in that State--and maybe it needs to be done in every State--that there's violations and noncompliance, they will investigate it and they will withdraw the funds from the school system, and they'll tell them, you will not get these funds if you don't do the job. That's the carrot-and-stick approach that needs to be used all across the country. All of your ideas and suggestions will be looked at very thoroughly. Ms. Fry, you have one more comment, real quick? Ms. Fry. Yes, I have my recommendations. I have been told very often that there are gray areas. The reason they don't train teachers is because it's a gray area. We don't have to train them specifically. Their idea of training is to send one person to a seminar, have them bring back all the information, photocopy it, pass it out, and everybody gets to read it; therefore, they're trained. I don't buy it. I think it's time to color in the gray areas and make it a little more specific, get the teachers some training so they understand that when a child is exhibiting a certain behavior, it's not because they're acting out, it's because something is wrong. They're not doing it just to be mean. Again, accountability. The schools don't seem to have anybody to say, you're not supposed to do this. I feel that they should provide the education. I send my kids to school for an education. I would hope that's what they're going to get there. Mr. Burton. Well, we will take all of your suggestions into consideration. We will draft some revised legislation, and we may even send it out to you folks who testified here today to get your input before we present it to the Congress as a whole. In any event, we will excuse this panel and ask the next panel to come forward. Do the people who are coming forward need to take a break for about 5 minutes? I see pain on some faces. We will recess for 5 minutes, and we will get started as quickly as possible. [Recess.] Mr. Burton. We will reconvene and I would like for you to stand so I can swear you in, please. This is normal procedure. You are not being singled out. [Witnesses sworn.] Mr. Burton. OK. We'll let you have opening statements. We will start with Ms. Guard and we will just go right down the row here. Try, if you could--as you heard, restrict your comments to 5 minutes so we can get to the questions as quickly as possible. STATEMENTS OF PATRICIA J. GUARD, ACTING DIRECTOR, OFFICE OF SPECIAL EDUCATION PROGRAMS, U.S. DEPARTMENT OF EDUCATION; MELINDA BAIRD, JD, KNOXVILLE, TN; GARY MAYERSON, JD, NEW YORK, NY; BILL EAST, EXECUTIVE DIRECTOR, NATIONAL ASSOCIATION OF STATE DIRECTORS OF SPECIAL EDUCATION, INC.; AND ED AMUNDSON, NATIONAL EDUCATION ASSOCIATION Ms. Guard. Mr. Chairman and members of committee, last November we celebrated the 25th anniversary of the signing of the Education for All Handicapped Children Act, now called the Individuals With Disabilities Education Act [IDEA]. As we explore the implementation of IDEA, it is important to take time to reflect on the tremendous progress that has been made in the education of children with disabilities since the passage of this landmark civil rights legislation. Today, more than 6 million infants, toddlers, children and youths with disabilities are provided early intervention and special education services. Over 95 percent of students with disabilities are being educated in the public schools. Post- school employment rates for youth served under IDEA are twice that of older adults with disabilities who did not benefit from IDEA in school, and the percentage of college freshmen reporting a disability has almost tripled since 1978. Despite this progress, significant challenges remain. As we review implementation of IDEA, it is important to recognize that this law calls for a Federal, State and local partnership. It's important to understand the roles of each of these entities in the implementation of this law. The Federal role is to serve as a steward for Federal investments, to develop improved interventions through research and development and to provide financial support and technical assistance to assist States in complying with the Federal law in correcting the systemic problems. The Federal role necessitates ongoing technical assistance to States. Periodic monitoring of compliance with IDEA, directives for corrective actions and different levels of enforcement and sanctions relative to the intensive pervasiveness and persistence of problems within States. The State role parallels the Federal role in supporting and ensuring the implementation of IDEA. By accepting Federal IDEA funds, States have an obligation to ensure consistent compliance with the IDEA statutes and regulations throughout the State. The State's general supervision role entails not only stewardship of the allocated Federal funds, but also of the much larger State investments that support children with disabilities. The general supervision role also necessitates an ongoing monitoring presence in the school districts and resolution of parent or student complaints filed with the State. The State agency has the obligation to ensure that each child with a disability is identified and receives appropriate services. In addition, the State plays a critical role in ensuring that districts have an adequate supply of appropriately trained teachers, administrators and other service providers to ensure that children with disabilities receive high-quality instruction. States also have responsibility for setting performance goals for students with disabilities and assisting school districts with meeting these goals through identification and support of promising practices, development of model demonstration projects in support of other effective research- based practices. Local districts develop policies and procedures for practical implementation of the State and Federal laws in each school in the district. Local education agencies must make certain that staff throughout the district are knowledgable of the Federal and State requirements and that services are provided to students and families consistent with the IEP developed by a team of professionals and parents for each child with a disability. Parents play a key role, along with school personnel, in developing, reviewing and revising, if necessary, their child's IEP, and in determining the type and intensity of services the child needs and where the services will be provided. If the parent and local school district staff cannot agree on the content of the IEP, or the recommended placement, the parent can file a complaint with the State if they believe the school district has violated a requirement in the law. The parent can also ask for a due process hearing and mediation must be available to parents who request a due process hearing. The remainder of my testimony will elaborate on the Federal role. The Part B Grants to States program assists the 50 States and entities in meeting the excess cost of providing special education and related services to children with disabilities. Children with disabilities served under IDEA must be determined to be eligible under 1 of 13 categories. In recent years, with the exception of the category of autism, the number of students receiving special education and related services has remained relatively stable. The reported numbers of children receiving services under the category of autism grew disproportionately as States and local districts became aware that children with the disorder could be reported as such rather than under other disability categories. We also believe the increase in the category of autism is a result of improved identification and evaluation procedures. Most funds provided to States must be passed on to local education agencies. However, a portion of the funds should be used for State-level activities such as administration, monitoring, mediation, direct and support services, developing plans for the State improvement program and helping LEAs address personnel shortages. Mr. Burton. Excuse me, Ms. Guard. I think this is the information that you have already given to us in your opening statement about the law. I think we're familiar with all of that. Ms. Guard. OK. I'm just summarizing my statement. I'm just about finished. I will talk about the monitoring process. Mr. Burton. That's fine. Go ahead. Ms. Guard. OK. Another Federal role is monitoring and enforcement of IDEA. Our intent in the monitoring process is to work with States to identify problems as early as possible and then help State and local personnel to acquire the tools and skills they need to correct these problems. We have found that the longstanding systemic problems cannot be quickly corrected. We've tried to use tools and mechanisms that allow States sufficient time to make corrections that will be effective and sustained. The Department has at its disposal a number of enforcement tools. It is important, however, that these enforcement tools be used appropriately. We fully recognize the urgency of and our responsibility for ensuring compliance with IDEA. The time a child is not receiving appropriate services is time lost that cannot be regained. Another Federal role is to provide support for the development, dissemination and utilization of effective services programs to improve results for students with disabilities. States and schools must have access to research- based practices that we know work to improve results for students with disabilities. The IDEA Part D National Activities program, which represents less than 1 percent of the annual national expenditure to educate children with disabilities, enhances the capacity of States to develop infrastructures to support the full range and effective implementation of IDEA through a variety of strategies including research, personnel preparation, technical assistance and dissemination, technology and studies and evaluations. For children diagnosed with autism and related disorders this has meant an increased OSERS focus on funding teacher training, including distance-learning projects to reach teachers in rural areas. It has meant developing model demonstration projects for children with autism that can be matched to the individual needs of the child. The National Academy of Sciences is conducting OSERS-funded research to examine the effectiveness of various interventions for children with autism. Findings of the study are expected to be released in July 2001. In closing, the IDEA is designed to make sure that children with disabilities have an equal opportunity to meet challenging academic standards, to learn, to stay in school, to graduate and move on to post-secondary education and the world of work. Many of the issues States are dealing with are complex educational issues that all of the education community is addressing. We believe that in most cases States and local districts are working in good faith to improve services to children with disabilities and to correct noncompliance. We also believe that no parent should bear the burden of enforcement just to get an education for his or her child. To that end, we recognize that if we are to fulfill our role, we must not simply monitor the States, but we must hold States accountable and have an ongoing presence providing technical assistance. By working collaboratively, we can improve the quality of education for children with disabilities. We can focus valuable time and fiscal resources on teaching and learning. Our children deserve nothing less. I will be happy to take any questions. Thank you. Mr. Burton. Thank you, Ms. Guard. [The prepared statement of Ms. Guard follows:] [GRAPHIC] [TIFF OMITTED] T5592.073 [GRAPHIC] [TIFF OMITTED] T5592.074 [GRAPHIC] [TIFF OMITTED] T5592.075 [GRAPHIC] [TIFF OMITTED] T5592.076 [GRAPHIC] [TIFF OMITTED] T5592.077 [GRAPHIC] [TIFF OMITTED] T5592.078 [GRAPHIC] [TIFF OMITTED] T5592.079 Mr. Burton. Ms. Baird. If you have a prepared statement for the record, we will be glad to use it in the record; but if you could stay as close to 5 minutes, it really would be helpful, so we can get to questions. Ms. Baird. I will try to be unlike most of my colleagues in the legal profession and keep it short. Mr. Burton. Thank you. Ms. Baird. My name is Melinda Baird, and I'm very honored to be here today, and I appreciate the opportunity to speak to the committee. I'm an attorney in private practice in Knoxville, TN, and I've been working in the field of special education for approximately 16 years. It may not surprise you to know that I have a different perspective and view than some of the witnesses that have testified today. I believe very strongly that in most cases the IDEA is working. Over the past 12 years I have provided hundreds of workshops and in-service training seminars for thousands of teachers, administrators and parents of students with disabilities. I would like to say at the outset that I have the utmost respect and empathy for all parents of children with disabilities, including those with children who are autistic. For the past 4\1/2\ years I have been privileged to represent school districts in Tennessee, Alabama and Florida in litigation concerning the IDEA and section 504. One misconception I hope to correct is that parents are advocates, and school districts are not. I would also like to dispel the notion that school districts have unlimited funds and are anxious to pursue litigation. Litigation in special education is a major concern for parents and for school systems. However, I believe we do need to keep it somewhat in perspective. According to the data compiled by the U.S. Department of Education, more than 6 million students were identified in 1998 and 1999 as being eligible under the IDEA. I annually prepare a yearly summary of all Federal and State court decisions affecting special education, and I've attached this to my testimony. For school year 2000-2001, my summary includes a total of 77 decisions. Of these, parents prevailed in 42 percent of the cases, and school districts prevailed in 58 percent of the lawsuits. I have prepared such a summary for approximately the past 6 years, and the edge of majority goes back and forth between parents and schools rather consistently. This number does not reflect the hundreds of decisions in due process hearings conducted at the administrative level. However, I think it is remarkable that on average each year less than 100 lawsuits are filed in Federal and State court out of a total of more than 6 million students receiving special education and related services. I know there's been testimony today concerning the federally funded protection and advocacy organizations. I can only speak to my personal experience and information. I can tell you that in the States of Alabama and Tennessee particularly, there are extremely active and aggressive protection and advocacy organizations providing free and low- cost legal representation to parents of students with disabilities, including parents of children with autism. Families also have options that I know you're aware of, such as filing complaints with the State, with the Office for Civil Rights or with the U.S. Department of Education. Schools, on the other hand, must fund all of their legal costs with no Federal financial assistance. Most school districts do not have insurance coverage for these costs, and it is for this reason that school districts are very reluctant to pursue litigation unless they have carefully considered the merits of the case. Without exception, the cases in which I have represented school districts have involved a difference of opinion as to what services are appropriate and required to be provided. I can say that I have never worked with a school district that wanted to deny appropriate services to a student with disabilities. In every case I have encountered administrators and teachers who sincerely believe that they were providing appropriate services to these students and who wanted to provide these services. One of the most active areas of litigation involves parental requests for particular methodologies, and without a doubt the issue receiving the most national attention here today and across the country is educational methodologies for children with autism. As I said, I practice mainly in Tennessee and Alabama. In both of these States intensive statewide training has been conducted and is being conducted, and significant financial resources have been committed to provide local school districts with the latest training in a wide variety of methodologies, including Applied Behavior Analysis, Discrete Trial Training, and those being the methodologies used by the Lovaas methodology. I would like to give you some information that I obtained this morning, and I'll be happy to provide it to the committee. In doing research on Education Administration Online, which is an online data base reporting special education decisions, I was surprised myself to see a very startling trend, and I think it's a positive trend in the cases involving children with autism. There are a total reported of 218 cases involving children with autism. That includes 59 State and Federal court decisions and 159 due process hearing decisions from the administrative hearing. That is total, period. There are no cases reported prior to 1994. I can tell you from my own research that prior to 1996, parents won approximately two-thirds of all autism cases, but after 1996, parents are not winning that level, and schools, in fact, are winning two-thirds of the cases. The cases peaked in 1998 with 52. In 1999, there were 33. In the year 2015--and this year so far there are no reported cases. About half of those cases involve parents seeking reimbursement for some of the methodologies that you have heard today. I think these statistics indicate that schools are receiving training and that they are getting their act together, so to speak, in knowing how to provide services for children with autism. The IDEA has done wonderful things for millions of children with disabilities and hopefully will continue to do so. I hope that the committee will recognize the efforts of schoolteachers and administrators to advocate on behalf of children with disabilities, not only those with autism. The IDEA was reauthorized, as you know, in 1997. We got Federal regulations in 1999. I have been on the road all over this country trying to help schools understand what they're supposed to do. It's a big burden, but I believe they have risen to the challenge. We don't need more laws and regulations. We do need full funding at the 40 percent promise. And I'd just like to say in closing that I think it would be wrong to assume that all complaints filed against school districts are without merit, but I think it would be equally wrong to assume that all complaints filed against school districts have merit. I think the fact that we have the small number of disputes that we have is, in fact, evidence that the system is working, not evidence to the contrary, and I thank you, and I'll be happy to answer any questions. 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Mr. Mayerson. Mr. Mayerson. Yes. My name is Gary Mayerson, and I want to be sure we don't miss, Mr. Chairman and members of the committee, to thank you for giving me the opportunity to speak, and I will try to confine my comments to the 5 minutes, if I can. Mr. Burton. Sure. Mr. Mayerson. Initially, just by way of background, I was for many years a commercial trial lawyer, almost 17 years, and I left the practice of commercial trial in order to become a-- basically to launch my own firm concentrating in educational rights for children with autistic spectrum disorders, principally an IDEA-type litigation, and I did it because of what was going on around the country of children being denied those services. And I saw it time and again, and not in any particular geographic region. I saw it in New York. I saw it in Greenwich. I saw it in Tennessee. I did the first ABA case in Alaska, TX. I have now represented children with those autistic spectrum disorders in approximately two dozen States now. So while I never got my flying license, I know you made reference to Representative Lantos, I certainly do fly the IDEA statute around the country a lot. And basically I'm here asking Congress to put me out of business because what I'm hoping that will be done is that there will be the sufficient funding, not simply throwing money at school districts. I don't think that's the answer. I think it is a question of making sure that the money, just like with a charity, gets to the people it was intended to serve. That doesn't mean padded administration upon administration. It means money actually going directly to the services that are necessary. And the other one is the accountability context. There really are--I believe that while there are enough lawyers out there that are ready to take retainers to work for school districts, there are precious few attorneys who are ready, willing and able to represent children with disabilities, and in particular children with autistic spectrum disorders. The learning curve is very high, the pay is erratic at best, and the results can be catastrophic if for any reason you fail the child. So for all those risk factors I think a lot of people shy away from that. It's very difficult to find people who are willing to take on that kind of case. Now, I do agree that there are a number of school districts around the country who are doing a fine job complying with the IDEA statute or making every reasonable good faith effort to do so. I deal with a number of those districts around the country. I'm able to resolve cases before they become a full-blown litigated dispute. That's the way it should happen, and ideally I shouldn't even be involved with it. But unfortunately there are far too many school districts around the country who, because of whatever reason, fear of precedent, fear of finances, desire for control, whatever it is, it doesn't matter, they stonewall the parents. They tell the parents they can't provide it, they can't find the people to provide it, they don't have the money for it, or sometimes they even tell the parents, we are going to provide it, and then 6 months go by and nothing happens, and meanwhile the child who has this incredibly limited window of opportunity is dying on the vine. I must speak briefly about one intervention in particular, which is included in my submission. That is the Applied Behavior Analysis intervention. The reason why this is so important for these children is that it is the only scientifically supported intervention which is proven to remediate much of the symptomatology of autism and to get rid of the behaviors and the interfering behaviors that prevent these children from fully mainstreaming. There is a very seminal study from 1987; Dr. Ivar Lovaas. There was a 1993 followup study. Both of these studies show with very intensive intervention of ABA, given over a 2 to 3-year period, approximately 47 percent of these children in these control and experimental groups were able to mainstream and go into regular education with their typically developed peers and be considered, ``indistinguishable.'' Whether they're indistinguishable or not for me is not the important thing. The fact is they're succeeding in the classic, least restrictive environment setting, and I don't care that it is not 100 percent, because like any intervention or medical intervention, some people are allergic to penicillin. Does that mean we shouldn't give penicillin to children with ear infections? No. It's the first and only scientifically supported intervention that's come out to remedy the impact of autism. That's huge. We don't have any other interventions with that kind of track record. The Surgeon General of the United States in 1999 came out with a report on mental health where he called Dr. Lovaas' 1987 study a, ``well-designed study;'' talks about 30 years of behavioral intervention and research on that. So this is not something that's experimental, it's not something that's new. It's just something that's been proven, and yet school districts will stonewall the parents and say, we are not going to give it to you, or we want to choose a different methodology, and our methodology is the same old special education that we've been giving for the last 50 years. That's not right. That goes against the whole grain of what the IDEA statute was designed to implement. I've got a number of important examples of how school districts have victimized families in my written presentation. Ms. Baird had mentioned the fact that she gives several hundred presentations, or she's given hundreds of presentations. One of the presentations that I have highlighted in my package is one called ``How to avoid Parents' Demand for LOVAAS.'' That's not what IDEA says. You don't go around spending taxpayer money educating people on how to avoid parents' demands; or Ms. Baird's own most recent one, How to Build a Legally Defensible Autism Program. And just in closing, I know that my time is already up. I could stand here for quite a bit of time, and I apologize if I have gone over at all, but my comments are contained in my written submissions. Thank you very much. Mr. Burton. Thank you, Mr. Mayerson. 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Mr. East. Mr. East. Thank you, Mr. Chairman. My name is Bill East, and I'm pleased to represent the State directors of special education here today. I am executive director of the National Association of State Directors of Special Education, an organization based in Alexandria, VA, with members in the 50 States and Federal jurisdiction. My organization supports State education agencies in providing leadership for the implementation of the Federal special education law, the Individuals With Disabilities Education Act. In celebrating the advances made possible by this law, we recognize that special education is a complex system with many challenges. The 1997 reauthorization significantly raised the bar for students, parents and schools. State directors of special education realize that the revised Special Education Service System can only be implemented with effective collaboration with general education, a strong focus on student and system results, and less emphasis on special education process and paperwork, sufficient numbers of properly trained personnel and full funding. Generally, most children with disabilities receive the services they need. However, the 6 million children served by this law could benefit from a system with higher expectations and increased accountability. While the needs of students with disabilities have always presented challenges for schools and families, the increasing numbers of children diagnosed with autism and learning disabilities have created more challenges. Further, the increasing number of students served outside the traditional school environments, such as charter schools, juvenile justice centers and other alternative environments, make it more difficult to ensure educational quality and procedural compliance. Schools are working to include students with disabilities in the general curriculum assessment and accountability systems in the context of increasingly higher standards. State directors of special education welcome these challenges, but know that the work force is not adequate to meet current demands. Schools are working to provide free appropriate public education to all students with disabilities. However, the system on any given day will probably never be in compliance if compliance means 100 percent student success rate or 100 percent adherence to many regulations put in place to implement the law. It is quite possible to have all the procedural paperwork in order without good teaching and learning going on. The system has adequate procedures to deal with the disputes between parents and schools with complaint, mediation, due process and litigation options. We must not necessarily equate disagreements between parents and schools with noncompliance. Even within a compliant system, disagreements about services will occur. State directors believe that monitoring efforts must be strengthened, but the focus needs to change from an emphasis on the special education process to an emphasis on student results and system accountability. With each IDEA reauthorization, new amendments and implementing regulations bump more legal costs into the system. Sometimes due process hearings and litigations are necessary, but other times the problems can be resolved in less adversarial and costly ways. State directors of special education believe that dispute resolution and mediation systems should be promoted as more desirable avenues for resolving complaints. Federal funding for special education programs has always been inadequate, and full funding is needed to ensure equal opportunity. Funds appropriated for special education are making it into the classroom, but more is needed. Federal funds utilized by State education agencies also benefit local schools. As increased funds are made available, State education agencies must receive more because they are accountable for implementing the IDEA. Families and schools face many challenges in providing services. While these differ from place to place, personnel issues are on everyone's list. The quality and availability of personnel is a critical matter demanding immediate attention. Higher education personnel preparation programs must be restructured to meet current needs. Schools must better recognize and utilize the expertise parents have related to their children's skills and abilities. And finally, the needs of children from other cultures and languages must be met as they often move into communities ill-prepared to receive them. In my written testimony I have some 10 suggestions that are ripe for support by the Federal Government, and I'll let you read those, and we may get to them in the questions, and I just want to emphasize three or four as I close: Continue efforts to fully fund the IDEA; help States provide sufficient numbers of properly trained personnel; hold States accountable for student outcomes, while providing increased flexibility as an incentive for results; and last, acknowledge the important leadership and oversight roles State education agencies play in implementing the IDEA, and support them with the resources to be successful. Thank you. Mr. Burton. Thank you, Mr. East. [The prepared statement of Mr. East follows:] [GRAPHIC] [TIFF OMITTED] T5592.240 [GRAPHIC] [TIFF OMITTED] T5592.241 [GRAPHIC] [TIFF OMITTED] T5592.242 [GRAPHIC] [TIFF OMITTED] T5592.243 [GRAPHIC] [TIFF OMITTED] T5592.244 [GRAPHIC] [TIFF OMITTED] T5592.245 Mr. Burton. Mr. Amundson, did I pronounce that correctly? Mr. Amundson. That's close enough. Thank you. Thank you, Chairman Burton. You have my written testimony. I would like to apply adult learning theory and not read to you what you have in your hands, and just give you some other comments that may be relevant. My name is Ed Amundson, and I serve as the chair of the National Education Association's Caucus for Educators of Exceptional Children. In that role for the past 5 years, I have been involved in the reauthorization of IDEA as well as the implementation with the Federal partners that were created under the reauthorization of IDEA with ASPIRE, ILIAD and some of the other groups. I speak to you today not in that capacity. I speak to you today as a classroom teacher who is teaching for more than 20 years. In fact, I can remember my career started when I was in fourth grade doing a carnival for muscular dystrophy. By the time I was in junior high school, I was working with aphasia children and working in summer camp programs. So this was a life decision that I do today. I'd like to tell you that NEA has long supported the Individuals with Disabilities Education Act. It's a good law that holds lots of promise. In fact, NEA played an integral role in the reauthorization. At one point when the law looked like it was going to fail, all the stakeholders, including parents, State directors of special ed, administrators, were brought into the building, and they came up with a compromise. With all compromises not everybody got what they wanted, but they got what they needed, and we all agreed it was a good law. I look around this room today, and I see many of those people, and I like to refer to it as the reunion of the class of 1997 that worked so hard on the reauthorization, but IDEA does hold a lot of promise. Unfortunately, lack of information, inadequate funding, misplaced emphasis on paperwork rather than teaching has created onerous burdens for educational personnel and have jeopardized the education for all students. I can remember before IDEA 97 was Public Law 94-142. When that law was passed, we would come together in an IEP meeting, and there was a sense of trust. There was a sense of accomplishment as we sat with parents, teachers, administrators and developed a program that would meet the needs of that child. We all felt good about what we did. We'd hold hands and sing Kumbaya and feel good that we had done something positive. Unfortunately today that trust has been broken. Many times parents come to an IEP meeting feeling that they're going to ask for things that the schools will not give them, and many times the schools are afraid the parents are going to ask for things they cannot give, and the trust is broken. We no longer have an atmosphere of cordiality. We have an atmosphere of hostility and lack of trust. I've talked with NEA members across the country who routinely express their frustration with the unwanted paperwork. It was not the intent of IDEA to create more paperwork. In effect, educators have made a real commitment and received additional training to teach special needs students; however, they find themselves filling in the boxes and less time filling in the kids. What we have now is we have more focus on the IEP product and no longer focused on the IEP process. Much of the paperwork burden stems from the people, the misunderstanding of what IDEA intended. Many times many State and local administrators apply paperwork requirements that are basically to assure they're in compliance, and that's the problem. Under 94-142, we used to look to see if people were in compliance. Today the focus is looking to see if people are out of compliance. That does not lead to good practice. That does not lead to good education. We need the Federal Government to provide leadership under IDEA 97, to let people know what they truly need and what they do not need in their monitoring process. Too often the district will have things in there that they do not need, and they're not told that you don't need this extra paperwork, and when they're told something is wrong, they don't change it. They add more to it. NEA also supports the appropriation of sufficient Federal resources to hire professionally certified medical personnel to provide safe quality medical services to our students. In the school district I teach in, we have over 5,000 special ed students. We have four full-time nurses assigned to those 5,000 students. One of those nurses is full time in the school for children with severe disabilities. The other three cover the other 5,000. That's not an appropriate service for our children. Parents have the right to expect the highest quality services for their children and should not be forced to rely on ill-prepared educators to perform procedures for which they are not trained. NEA also believes that students who engage in violent or disruptive behavior should be subject to similar disciplinary actions, including suspension and expulsion, as their nondisabled peers, where the misconduct is unrelated to either their disability or improper placement. Too often, however, fear of litigation prevents schools from taking action even when students pose a danger to themselves, other students or school employees. The law allows people to do the job they can if the law is applied and due process is followed. Unfortunately many school districts are afraid of litigation and do not follow the process. NEA also supports the ramping up to the full 40 percent over the next 6 years for IDEA funding. Let's be honest, IDEA funding is a grant program. There was a promise by the Federal Government that we've never come close to reaching. The current law provides an excellent framework for ensuring the highest quality education for all students with disability. With the proper supports our special education system will meet the needs of all students with disabilities. I'd like to close to tell you that we have a parallel system operating today. The law now that we have before us allows for the different uses of the funds. We have permissive use of funds that can allow for early intervention programs that hopefully will avoid some of the problems we see today. I remember the day when students could not touch my special ed eraser if they were not special ed students. The law allows us that flexibility. However, we have students in the system that do not have that, were not available to them at that time, and they present special needs to us. We need to find a way to not only meet the needs of the students who are coming into the system today, but to also meet the needs of the students that are with us. And finally, when I talk to teachers around the country, I tell them that they're heroes. What they do every day, they're heroes. And a teacher said to me, I'm not a hero, I'm just an ordinary person; a hero is a fireman who runs into a burning building. Well, I would submit to the members of this committee that the teachers are heroes. They do run into burning buildings every day. Unfortunately, like firefighters, they're not adequately trained or prepared to deal with the problems that they will have to face when they run into that burning building. And last, when I talked to a group of teachers one time about a student with special needs that was about to be included in their school, we went around the room and posted on all four corners of the walls all the concerns these teachers had about educating this child, and at the end I asked them, now that we know what your concerns are, what are your fears, and the teacher looked at me and said, I am a good teacher, and if I do not know how to meet the needs of this child, I will fail, and as an educator I cannot do that. I ask that we look for providing the adequate training and resources to support the people who do the job every day, and I'd be happy to answer any questions. Mr. Burton. Thank you, Mr. Amundson. [The prepared statement of Mr. Amundson follows:] [GRAPHIC] [TIFF OMITTED] T5592.246 [GRAPHIC] [TIFF OMITTED] T5592.247 [GRAPHIC] [TIFF OMITTED] T5592.248 [GRAPHIC] [TIFF OMITTED] T5592.249 [GRAPHIC] [TIFF OMITTED] T5592.250 [GRAPHIC] [TIFF OMITTED] T5592.251 [GRAPHIC] [TIFF OMITTED] T5592.252 [GRAPHIC] [TIFF OMITTED] T5592.253 [GRAPHIC] [TIFF OMITTED] T5592.254 Mr. Burton. First of all, I'd like to ask all of you if you could--I'd like to ask all of you the same things that I have asked the other panel, and that is, suggestions that you might have that could improve the IDEA program. I think it's important that we realize that there are some shortcomings, and we're not pointing fingers at any individuals or any group of individuals, and if we can figure out a way to make it better, make it more effective without creating more bureaucracy and more paperwork, then I think that would be a giant step in the right direction. So while you're thinking about them, let me just ask a couple of questions. Ms. Baird, as Mr. Mayerson was saying, I'm looking at this program agenda, I guess, for one of your presentations. It says, special education for early childhood autistic students, how to avoid parent demands for LOVAAS/TEACCH methodologies. You know, I mean, maybe that's a legitimate topic, but it seems to me that maybe could have been worded a little bit differently, because parents are concerned about the well-being and the education of their children, and having been involved personally in one of these meetings and experienced it, I think that you know parents don't want to demand any more than they think is necessary for their kids. They want them to be educated. They want them to be able to be educated. They don't want them to be a burden on society. I mean, my grandson, I'm going to give you an example, he's going to be 6 foot 10. You know, I'd like for him to be in the NBA so he can support me, you know, and I'm kidding, of course, but the point is the doctor said he's going to be very big. Now, he's autistic. He ran around the house flapping his arms and--but he's doing much better now. His doctor, who is an expert in this field, said that he needs at least 2 hours a week of speech therapy, and so he can progress properly. The school, as you heard previously, had a meeting before we even got there and had decided that 1 hour was sufficient without even talking to my daughter or myself. And those sorts of things really bother parents because they have an expert in the field, a doctor who studied, who got his degree in that area, and who has worked with thousands of children, and a young lady who is 23 or 24 years old in the school system there, probably a very good speech therapist and good teacher, made a determination that half of that was sufficient. And so when I see something like this and a parent hears about that or hears you making a statement at a meeting that, you know, parents want a Cadillac, but you guys only have to give them a Chevrolet, explain that to me. Ms. Baird. I'd be happy to explain that, and I appreciate you giving me the opportunity to explain that. I suppose that the statements you're referring to, although I don't recall it directly, is from the program that I recently did. The title of the program was Building a Blueprint for a Defensible Autism Program. The intent of that---- Mr. Burton. A defensible autism program? Ms. Baird. Yes. And never in my career have I had such a response from a title of a program. Let me explain and clarify. Mr. Burton. Sure. Ms. Baird. A defensible autism program is one that is appropriate for the individual child based on that child's unique needs. The whole intent of that program--and, frankly, I was a little personally affronted by it, because myself and Melissa Genaux, who was my colleague, who did the programs, developed those programs and went on the road to do that for one reason and one reason only, and that was to take information to school districts about what they were going to have to do to develop appropriate programming for children with autism. In no way was it in an effort to get around appropriate programming or to somehow avoid it. And I would love to explain the Chevy versus Cadillac analogy. That is not mine. Mr. Burton. Before we get to that, if you could explain how to avoid parent demands? I mean, gee whiz, you have a parent who's not a Congressman, who doesn't have all the ability to raise hell about these things, they don't know the legal process, and they see that you're talking to people in a school corporation and you're saying how to avoid parent demands, and they've got a child that's autistic, how are they supposed to interpret that? Ms. Baird. Well, again, Congressman, all I can tell you is that the intent of the program was to educate schools about providing appropriate programs. I'm not an expert on autism. Neither do I claim to be. I'm an attorney who's had some experience in this field. I have had a lot of experience with parents making demands for particular methodologies, including LOVAAS/TEACCH, the Orton Gillingham method for children with learning disabilities, different methodologies. So the intent of the program was not to say to a parent, you can't have what you want. The intent of the program was to educate school districts. And I might add that in every single session if you want to get down to the bottom line of the session, my message to school districts was, and here I will agree with Mr. Mayerson, that the LOVAAS methodology, which is conditioned upon the principles of applied behavior analysis and discrete trial training, has been scientifically proven to be a positive methodology for children with autism and other children with severe disabilities, and as a matter of fact, I have heavily advocated to my clients and to those people who have come to the seminars that they must include applied behavior analysis and discrete trial training in any effective and appropriate program they develop for children with autism, and I have been very consistent about that. Mr. Burton. I will have some more questions, but I will now yield to Mr. Allen for questions. Mr. Allen. Thank you, Mr. Chairman. Mr. Burton. I believe you have been here longer. Would you like to go first? Mrs. Maloney. Absolutely. And I was listening, I had some constituents who came to visit me, and I was out in the hall. Mr. Burton. And I know that you're very resigned to always being last and everything, but I don't want you to get upset today. So go ahead. Mrs. Maloney. Thank you, Mr. Chairman, but I really would like to followup on your level of questioning and the theme that you have presented. I'd like to ask Mr. Mayerson, are there sufficient remedies at present to ensure that school districts will comply with IDEA, and if not, do you have any recommendations for the committee? Mr. Mayerson. Well, I think as we've said today that really is the million-dollar question. I don't think I'll have to call my lifeline to answer that one. First of all, I think--the parents have to have faith in the integrity of the system. We start with that. That means in order to have an impartial hearing, it really has to not only be impartial in fact, it has to look impartial. For example, in the State of Utah, where there's a Federal lawsuit pending right now to challenge the way that they select their hearing officers, the fact of the matter is not a child has ever won in the State, has ever been the substantially prevailing party ever in the State of Utah, ever. No child has ever won. Now, that may actually have an impact on the kind of statistical data that Ms. Baird is collecting recently and have something to do with the fact that virtually all of the hearing officers that are on the list--to get on the list, virtually all of them are connected. They're either the special administration director of the neighboring school district, or they're the attorney for the neighboring school district, and a parent doesn't have a chance. So that's one thing, create an integrity in the system. Two, there's a section that you have in this Code of Federal Regulations, 34 CFR, section 300.403, and what this section does, it says that if the hearing officer finds that the parents engaged in some kind of inequitable conduct or unreasonable conduct, that a child that otherwise would have prevailed at the hearing, the hearing officer has the discretion to knock down the award or even to eliminate the award. You know what? That's fair, but what's fair is fair, too, and I say if you're going to have a section like that that basically puts the onus on parents, that if they're not unreasonable, that they could lose their child's award, that you must also have the same kind of accountability for school districts; and that if, in fact, you have the kind of examples of patent bad faith that I've appended to my submission, that if the parent can prove that and has to go through, as I've recently gone in Ms. Baird's home State of Tennessee, a 30-day hearing for a family that is teetering on the verge of bankruptcy, that if a family like that can prove bad faith, like almost a punitive damage kind of remedy, that I don't want to encourage litigation, but if it reaches a certain level of patent bad faith, and the hearing officer so finds, that's the kind of accountability that I believe that school districts will be very careful about, because right now if you're the school district, it's not like the parent that has to go and open a checkbook. Everybody can point the finger at everyone else. It's no one's checkbook because it's the district's checkbook. And if the district has to just give, at the end of the line of the litigation, after 30 days of hearing, precisely what they should have given without litigation, maybe some attorneys' fees, you know what, it's no big deal because many districts are afraid of precedent. They're saying, you know-- and it's in my submission--they say, we are afraid not of this child, but of the maybe six or seven other children we may have to pay for. So we would rather delay this child in a 30-day hearing and maybe we'll buy 2 years than to give all six of those children an intervention. And I just want to point out one other thing about the cost aspect in answering because this is a huge point. This is the point, the cost. There is a cost-benefit analysis that's appended to my papers, was published in a peer review journal, that shows that you might for these children with autism spend several hundreds of thousands dollars on an up-front basis to get them the right intervention, but if you don't do the lifetime costs of it are totaling several million dollars per child. That's something I think Congress can easily understand. Even if you look at this from the perspective of the administrator, who may be looking at just this year's budget, let's just fix this year's budget, you have to have a long view, and if you take a long view, it is more cost-efficient to provide the intervention up front even if it does take several hundred dollars. It's not cheap. We give children that need lifesaving operations $300,000 surgeries, and we should, but we shouldn't shirk from giving those children the same type of interventions if it is required to get them into--to have some kind of functioning so they can join society and have jobs and be in regular education. Thank you. Mrs. Maloney. Well, my time is up, but did you mention that Ms. Baird had visuals and brochures of how the school districts did not have to live up to their responsibility? Mr. Mayerson. Well, yes, there are---- Mrs. Maloney. Could you give them for the record? Mr. Mayerson. They are in the record, and I put them in the record. One of them in particular is how to build a legally defensible autism program. Another one of the brochures is also in there. Apparently there's hundreds of them, and they are not for parents. I take issue--although some parents have been managed---- Mrs. Maloney. They're not for parents? They're for the school district? Who are they for? Mr. Mayerson. No. The first brochure that I put in is called a private briefing for administrators, school districts and so forth. Maybe a parent might accidentally be able to get in and see what goes on, and that's, in fact, how I got the first brochure. Mrs. Maloney. Do you mean to tell me that they're handing out brochures on how school districts will not respond to parents or live up to the law; is that what you're saying? Is that what you're saying? Mr. Mayerson. Congresswoman Maloney, not only am I saying it, I have one of the brochures, which is tab 6 of my presentation. It's entitled ``A Private Briefing Designed for School Board Members, Central Office Administrators, Special Education Directors, Building Administrators and Regular Educators Focusing on Special Education Issues.'' It was presented by a law firm in Missouri called Peper, Martin, Jensen, Maichel and Hetlage, as well as the Missouri Association of School Administrators and the Missouri U.S. Insurance Council, which insures the districts when they get hit with due process complaints. And page 2 is entitled---- Mrs. Maloney. Is that legal to hand out that kind of information on how to shirk the law basically? Mr. Mayerson. In fact, I wrote to everybody involved and expressed my outrage that taxpayer money, which obviously the school districts that attend this have to pay with taxpayer money to attend these seminars, and expressed my outrage that this--such money was going for such purposes, and all that has succeeded in doing is sanitizing these kind of presentations so now we have this thing called ``How to Build Legally Defensible Autism Programs.'' I think it's the same presentation, just under a different name. Mrs. Maloney. That's unconscionable. My time is up. Thank you, Mr. Chairman, for focusing sunshine on this issue. I think it's a very important one. Mr. Burton. I hope that you and possibly Mr. Allen and others on both sides of the aisle will work with us to create maybe some corrections to the IDEA law so that we can make sure that some of these problems are eliminated. Mr. Allen. Mr. Allen. Thank you, Mr. Chairman, and thank you for holding these hearings. I certainly appreciate the chance to focus on this particular area, I guess I should say. Let me just say a few words. I come from the State of Maine. I represent the district around Portland, ME, and over the last month I've had about four different meetings, actually about six, with parents and educators and teachers. In four of those meetings in specific school districts, we were running through a list of different problems that they were having, and in Maine you should know we have about 230 school districts. We are sparsely populated, we're spread out, and our school districts tend to combine several different municipalities at once. The No. 1 problem mentioned over and over again was the level of special ed funding from the Federal Government. The other two were how are we ever going to recruit new teachers, and how are we going to build new schools, but those were the three. Special ed was the top. In Maine I think we've got a special ed program that in broad measures works and works fairly well; 16 percent of all Maine children are in some form of special ed. We're doing a good job, I think, of identifying the kids who need it and making sure they get the services they need, but we do have resistance from school boards because despite the success of the program overall, there is a huge problem. Special ed spending at the local level is eating up a large part of the available increases in funding overall. So there are three groups that are impacted, special ed kids, kids with disabilities, and the property taxpayers who are now picking up an undue share of the expense. It seems to me that because the Federal Government issued a mandate for special ed and then didn't fund it at the goal of 40 percent, we're putting a tremendous financial burden on our municipalities and school boards, and it seems to me--oh, one other thing just by way of background, Maine does an educational assessment for 4th- graders, for 8th-graders and 11th-graders, and it takes about a week. It covers a whole variety of subjects. One superintendent told me the other day that the fourth grade--in his fourth grade reading test, 14 percent of the kids failed. Of those, despite the special help, 60 percent were special ed. So one of my questions is to you, Mr. Amundson. I am concerned if we start to do relatively high-stakes testing, it seems to me we're going to come back to a problem of whether or not our special ed programs are working well enough so that kids who are getting these services being brought up to a par with regular students. That may not be possible, but it seems to me that the testing issue is very much connected to the funding issue. Before I let you speak, I want to say one more thing. I believe we need to do full funding now, no phase-in, no nothing, just go straight to full funding now. It is $11 billion more than current levels for the next year, and this is probably the only time in the next 10 years that we can do it, and we can only do it if the tax cut, the proposed tax cut, is reduced by the $150 billion or $200 billion it would take to fully fund special ed over 10 years. That, I think, would transform the effect of this program on our local school districts, and I know you have been calling for it, and other people have called for it. This is the only chance I think we'll have to do it, and it seems to me it ought to be done, but I would like Mr. Amundson or anyone else to turn back for this question of how a testing--a tougher testing regime will affect the overall special ed program. Mr. Amundson. Well, Congressman, several months ago I posed this question to my special ed class, government class, seniors. In California they're instituting an exit exam for all high school seniors in order to receive their diploma, as well as we have the API, the Academic Performance Index, which is based on standardized testing at all grade levels, and schools' performances are judged on these standardized tests. As an organization, as a teacher, I believe in assessing my students. I believe that's important to find out the progress they're making, but I also believe the testing needs to be curriculum-based and based on the instructional strategies that I'm utilizing in my classroom and measuring what the students are learning. Too often the standardized test measures what the students do not know and doesn't really measure what they do know. I've heard students say that sometimes they just color in patterns on the test because it has nothing to do with the curriculum they have in the classroom, and we are using that as a measure of whether students or schools are succeeding. I saw a cartoon in the ``USA Today'' about today's curriculum the teacher's written on the board. We have art, poetry, recess, and then standardized testing, and that was today. I think the testing does have a role, but what I'm seeing now is many teachers are afraid to have special needs students in the classroom because if they're going to be assessed on the success of those students, and the appropriate accommodations and modifications necessary are not allowed for those children, then the scores in the classroom could well come down, though research does show in many cases scores actually go up when students with special needs are included, because not all students are learning-disabled or have academic difficulty. But what does happen is teachers are fearful that they will be measured on things that they cannot control when they were the ones who said, I want this child in my classroom, I want to educate this child, but now that I can't control an environment of the accommodations and modifications, I may be judged on that, and I may lose out on moneys or funds that will be given to the school, and I'm the one who volunteered to take this child. So it does have an impact, and I think the exit exam in itself, we're going to be creating two separate educational systems, one for children who are on a diploma track and one for children who are not, and I think that's the concern, because if you look at what the standards are based on, 100 percent of the curriculum in high schools is geared toward the Carnegie units and how students apply to universities; 30 percent of the graduate population goes on to complete a 4-year degree; 70 percent of our population is left out of the goal of the high school curriculum, and it's not just special needs students. There are general ed students that are going to be involved, too. So I think we have a bigger question, not just on the special ed issue, but it does severely impact in what people are trying to do. Mr. Allen. Thank you. Mr. Burton. If you'd like to ask more questions, I will get right back to you. Let me just followup on that, and this really, I guess, doesn't follow the topic of the hearing, but it seems to me that there ought to be some way to come up with some kind of a testing program that will be able to test whether or not the children across the country--some kind of a standardized test program that would take into consideration the special needs children and the other kids that are in the classroom, and I hope that the NEA will maybe work with those of us in Congress who believe that we've got to have some kind of a measuring device to decide whether or not kids are coming out with the kind of quality of education we want. I don't know that you need to make a big, long comment on that, but, you know, the President has said I think in his State of the Union Message and others that he wants testing to make sure kids at certain grade levels are achieving. And I understand the concern of teachers who have special needs kids, and there are others who may not be able to move up as rapidly, and the average would bring them down and make them look like they're not good teachers, but there ought to be some system devised with the help of the NEA and other teachers' unions to take that into consideration. Mr. Amundson. Well, briefly, Congressman, you should take a great deal of pride that the State of Indiana has a very unique testing system that does not just base itself on standardized testing, but also has a special three-prong program. Students can go through and take the standard tests to receive their diploma. There's a second pathway that students who are enrolled in a special instructional program, when it seems that they have difficulty, to be able to do better on the test, and they receive extra tutoring. And there's a third program that requires 95 percent attendance as well as a portfolio of assessment of the student given to them by the teachers of them to say they may not do well on tests, but they demonstrate knowledge. And I think Indiana is a model that we're looking at that other States should be incorporating. Mr. Burton. Well, that might be one of the things that you could recommend that we'll take a look at, and I will talk to my colleagues in the Indiana Education Association, ISTA, and talk to them about that. I don't want to get into a big, long debate about these issues. I know Ms. Baird has one position, maybe Ms. Guard has another, Mr. Mayerson has another, and Mr. East another. What I really would like to have is suggestions from you that we can all take a look at to make it--to make the IDEA program better, to make it more workable, to make sure that special needs children do get the best education possible. And so if you could just real briefly give me a couple of suggestions, or maybe if you're not prepared to do that right now, get them back to us. I really would appreciate it so that we can take a hard look at the current law and see if we can't make it better. Parents like my daughter, parents like the ladies and gentlemen who testified here today who have autistic children or special needs children, they're so frustrated, they don't know what to do. Some of them have almost gone bankrupt trying to take care of their families, make sure their children get a quality education. So something needs to be done to make sure they have confidence in the system, No. 1; and No. 2, that the kids do not become a burden on society when they become 6 foot 10 and they're adults. I mean, my grandson is going to be a big guy walking around like Shaquille O'Neal, and I want him to be able to at least get a job. I don't want him to be sitting out under a tree someplace not able to deal with society. And I know parents all across the country feel like that. So give me some ideas that we can incorporate into our thinking, and I will start with you, Ms. Guard. Do you have any that you would like--or would you like to get back to us? Ms. Guard. Yes. I can certainly tell you some of the challenges that districts are facing as they implement the current law. I'm not in a position to talk about changes that we would recommend for them. Mr. Burton. All right. Well, would you do me a big favor, and if you could get back to Beth, that's my chief expert on these issues, if you could get back to her with some suggestions we'd appreciate it. Ms. Baird. Ms. Baird. Yes, thank you. I would like to reiterate a theme we've heard all day long, and that's increasing funding for special education programs and services. Mr. Burton. We're going to work on that. Ms. Baird. The other comments that I would make come to you from the many, many comments I hear from schoolteachers and administrators as I go out and talk with them. I know that there is pending legislation to retool or refine the discipline requirements in the IDEA. I can tell you from the local school base there's a lot of interest in doing that. I would hope that part of the increased funding could go for behavior management techniques and training for schoolteachers who are dealing with students with emotional problems and behavior problems and for alternative school programs. Reduction in paperwork is a major priority that the people that I talked to are interested in. The paperwork burden has increased, not decreased, after the reauthorization. And one of the final---- Mr. Burton. Let me just interrupt on that point. We need some guidance on how you reduce the paperwork. Just to make a general statement, reduce the paperwork, I mean, there must be forms and documents that have to be prepared about a special needs child. What I'd like to have more specific is how do we reduce the paperwork, how do we consolidate the amount of questions that are asked so that we can get through that quicker. Ms. Baird. Well, it goes back to the requirements of the law, and I was about to say that in 1997 there were sweeping changes made in this law in order for school districts to document and prove that they are in compliance. And I agree with the comments Mr. Amundson made. Pardon me for mispronouncing your name. We have gone far beyond the original intent of what an IEP is supposed to be, and in order for a school to have a defensible appropriate program, it's an incredible amount of paperwork in terms of IEPs, goals, objectives, short-term objectives, manifestation determinations, and I'd be happy to provide a list of some of those things later. There's also another area, the last one I'll mention. I get a lot of input and interest from clients and school personnel on the category of emotional disturbance. There's a tremendous increase in the number of students with behavior problems in public schools and a tremendous amount of longing among school personnel for techniques in how to deal with those students. The law has always and still does exclude students with social maladjustment, but we have never had a definition of what that means, and those would be the comments I would make. Mr. Burton. Mr. Mayerson. Mr. Mayerson. I know you're looking into the causes of autism, and we really have no control over that. Mr. Burton. No. We have people who testified today that the children were autistic from birth. We have others who had autism, they believe, coming right after certain kinds of vaccinations. Mr. Mayerson. I think in that case I would defer to science, and I know that right now if you look at science, there is no testing for autism which is scientifically reliable before the age of about 15 months, so that I think--and I also agree with you, Mr. Chairman, when you say that you have to look to parents, because if they're doing it 24/7 with the child, they know things that other people just don't know. So anyhow, I would be saying that I would like to, with permission of the committee, I would propose to draft some proposed sections to modify the current statute in such a way that would, I believe, simplify; to provide a disincentive to school districts as well as to parents to engage in inequitable or bad faith conduct which nobody wants from either side; as well as the whole issue of oversight on the funding, where the money goes and how to make sure that it really gets to the children as opposed to just building up layers of administration and bureaucracy that nobody wants. Mr. Burton. We'll welcome your suggestions, and if you want to put those in writing, that would be very well received. Mr. Mayerson. I will do so. Mr. Burton. Mr. East. Mr. East. Mr. Chairman, we will put our thoughts in writing as well. I will just mention a couple of things. Once you get beyond the full funding issue, there are two things that really come to my mind that I hear from our members, and that is, there's just a critical shortage of properly trained personnel across this country that work with people with disabilities. That is not only special education teachers, but the general education teachers who are now dealing with special education students in their classrooms. They don't know what to do. Mr. Burton. Let me interrupt. We--I said in my opening statement, I don't know if you heard it or not, that we might come up with a program which would--in exchange for teachers being--getting their educational benefits provided for them, that would spend 4 or 5 years in special ed training and teaching of children in urban or rural areas, that they would get their expenses for education paid in exchange for the commitment to teach in that environment for at least 5 years. We do that for medical students. What do you think about that idea? Mr. East. I think that's an excellent idea. What I'm concerned about, though--and that would help us in the future. What I'm concerned about is all the thousands of teachers that are already out there, and they have children in their classrooms right now, and they need training and support of general and special education teachers, because IDEA 97 did change the way that we do business because we're exposing children with disabilities, more and more of them, to the general curriculum. That's good, but the teachers that are teaching that general curriculum don't know how to work with these children. Another thing is I think we need to continue to work toward a strong focus on student results and system accountability. State directors of special education promote this and support it. We have accountability now, higher standards, greater expectations for promotion and graduation. We want those for special education students as well, but we've got to focus on it. Special education for so long has been focused on do you have the paperwork in place, is everything in the folder in the right order. Now we need to focus on is the child learning, what are their scores on assessment, and what do they do in adult life after they leave us. And so the focus on results accountability is what we need to look at. Mr. Burton. If you could, we've written that down, but if you could send us any additional information you have, we'd like to have that. Mr. East. We'd be glad to. Mr. Burton. Mr. Amundson. Mr. Amundson. There'd be three things. No. 1, we do need strong leadership from the Federal level. Too often the Feds take too much blame and too much credit for things about education, but we do need strong leadership as to what States are expected to do. I also think that we need a maintenance of effort to assure that the increased funds that come in do not limit the obligation of State and local districts to what they're currently spending and to shift funds from one side to the other. I think the issue of training is very significant, both pre-service and in-service training for our teachers, because if they don't adequately prepare, they won't be able to do the job. I think your grant program is an excellent idea in some ways and the other way, one of the problems of special ed is, for many people it was the entryway into the education profession, and then after 5 years they leave when it becomes overly burdensome. The problem is, because of the constraints and some of the difficulties in special ed, they leave. We can have lawyers and laws all we want, but once that bell rings and Betty Bob walks in the door, the door closes, and Mrs. Miller does her job. She teaches. If the system we have today doesn't change, Mrs. Miller won't be there, no matter how much money we have or how many laws we have. We need to make a program that allows teachers to do the job they need to do, which is to teach and work with parents. I think those would be some of the key elements we need to look at. Mr. Burton. Do you think that the lack of discipline in schools is one of the major reasons why we're seeing an exodus of teachers? Mr. Amundson. I think the lack of understanding of how to implement the law in our schools is why we're seeing--in discipline. I heard in Tennessee an administrator told a teacher they could not file a police report on a special ed student even though the law is very clear they're allowed to do that, and Tennessee law requires that to be done. So we have misapplication of the law, and that's one of the problems with discipline. The law allows us to deal with the discipline of children if the procedural safeguards are followed. Too often fear of litigation and publicity does not allow administrators to properly implement what was put in IDEA 97 which does hold students accountable for their behavior. Mr. Burton. Maybe we need to clarify that a little bit more if we're going to---- Ms. Guard. Excuse me, Mr. Chairman. We did recently issue guidance for administrators to follow, to let them know what their requirements are and how to implement those requirements. Mr. Burton. That was widely disseminated? Ms. Guard. On our Web site. Mr. Burton. I want to thank you all very much for your suggestions and your patience and your hard work. And hopefully you will have some suggestions that can help us make some changes. Thank you very much. We stand adjourned. [Whereupon, at 4:22 p.m., the committee was adjourned.] [The prepared statements of Hon. Thomas H. Allen and Hon. Dennis J. Kucinich follow:] [GRAPHIC] [TIFF OMITTED] T5592.255 [GRAPHIC] [TIFF OMITTED] T5592.256 [GRAPHIC] [TIFF OMITTED] T5592.257