of an appropriate public education. That would have turned upside down the whole purpose of our actions in passing this law.

But that turning upside down is, in effect, where this Supreme Court case, Smith v. Robinson puts us. The total lack of parents' ability be reimbursed for attorneys' fees means very few will have the resources to pursue their child's rights when it is necessary for them to do so.

It should be said, first of all, that we are talking about only a small percentage of the handicapped school population. The record of the last 10 years has been overall an encouraging one-showing the ability of schools to work with parents on behalf of these children. But there have been problems, and we can't ignore the fact that there continue to be some problems.

Ironically, instead of encouraging schools to work cooperatively with parents to meet the child's needs, the Supreme Court decision gives an incentive to schools not to compromise on solutions, but to delay action, to stretch out the administrative process and to force parents into court for relief, knowing that their ability to go to court is lessened without attorneys' fees.

Some fear that providing the possibility of attorneys' fees will increase the amount of litigation. I don't believe so. In the first place, attorneys' fees have been granted by some courts in the past. It has been an assumed possibility if the parents' case was successful. There is no indication that the possibility increased parents' interest in going to court. Under the bill we are considering, the attorney fees are still just a "possibility"-depending on the success of the parents1 actions and on the discretion of a court.

Second, we know that parents of handicapped children have enormous financial and family burdens from the time the handicapped child is born. They probably have had to fight many battles on their child's behalf before he or she is even of school age. They are not interested in getting into battles with the school system that they are probably going to have to be dealing with for the next 12 or 13 years. They do not want to delay their child's education for 1 day, let alone the sometimes years it takes to pursue administrative and court remedies.

One other point is important. Some argue that the administrative hearings process should not be covered by this bill. Unfortunately the arguments on this ignore the fact that these hearings-where witnesses are called and sometimes technical and medical evidence is offered-are quasi-judicial, and certainly the schools have access to counsel for these hearings. It is simply an issue of fairness to ensure that parents may also have the advice of an attorney for these hearings. This does not affect the informal process in which parents meet with school officials to work out and IEP for their child. It would only be where the informesal process do not work to provide an appropriate education, and it is necessary for parents to move to the formal hearing level, that attorneys would become a possibility.

Mr. Chairman, I hope we can move quickly to the adoption of S. 415, which is one of the most important pieces of legislation affecting the lives of handicapped children in this country to be considered in the last 10 years.

Senator WEICKER. Thank you very much, Senator Simon.

Senator Nickles.

Senator NICKLES. I don't have an opening statement, Mr. Chairman, thank you.

Senator WEICKER. All right, the first panel consists of Mary Tatro of Irving, TX; Edward Abrahamson from Sharon, MA; and William Dussault of Seattle, WA.

Please have a seat and make yourselves comfortable. Why don't we proceed in the same order. Mary, why don't you lead off. We are looking forward to the testimony from all of you, and I am sure the panel will have a few questions to ask after you are through. I think that it might be best, No. 1, to assure all three of you that your statements in their entirety will be placed in the record; and, No. 2, we will hear from all the panel before the questioning

commences.

STATEMENTS OF MARY L. TATRO, PARENT, IRVING, TX; EDWARD ABRAHAMSON, PARENT, SHARON, MA; AND WILLIAM L.E. DUSSAULT, ATTORNEY, SEATTLE, WA

Mrs. TATRO. Thank you very much for this opportunity to appear before this committee. My name is Mary Tatro, and I am the parent of a 9-year-old young lady named Amber, who was born with a congenital birth defect known as spina bifida, which means an open spine. We live in Irving, TX. Due to Amber's birth defect, like 98 percent of all children born with spina bifida, she developed hydrocephalus or water on the brain. She has partial paralysis of her lower extremities, and walks with braces and crutches. Because of this paralysis she has poor bowel and bladder control. She has had many surgeries in her young life; among these were surgeries to close her back, installation of a shunt into her brain to relieve the hydrocephalus, two eye operations, two hip surgeries, and repair of a tethered spinal cord.

Amber is truly an ideal Public Law 94-142 child. She functions well in the "normal" classroom with her "normal" peers. She receives occupational and physical therapy, adaptive PE and is resourced for 1 hour each day-45 minutes for math and 15 minutes for handwriting. She has just received her report card, and her lowest grade was a B minus.

The bladder problem was the kicker when it came time to enroll Amber in the Irving Independent School District's early childhood program, thus beginning 5 years and 2 months of pure hell for the Tatro family. Because of the paralyzed muscles to her bladder, Amber has had many, many bladder infections until a fairly new procedure was prescribed called clean intermittent catheterization or CIC. This is a very simple method of draining the bladder and it can be done by any lay person after a minimal amount of training. Most of the children can be trained to eventually do CIC for themselves. This method keeps the urine from refluxing back into her kidneys.

In 1978, I contacted the school district and informed them of Amber and her condition, including the fact that she must have CIC during the school day in order to try to keep the bladder and kidneys intact without further damage. În 1979 she was tested by the school and our IEP meeting was held. I had been informed by the school that even though Public Law 94-142 states that disabled children are eligible from age 3 through 5 for the program, the State of Texas does not allow disabled children to start to the early childhood program unless the child is 3 by September 1.

Amber's birthday falls on October 9, so that right there she had to wait almost 1 full year before we could try to enroll her in the program. She had been in a school for disabled children paid for at our expense since she was a year old. There was no program for her at that school after age 3, because all of the children that she was in class with at that school started to the Irving Early Childhood Program. Amber did not get to start to school at that time, and this is the way that the legal battle went.

In 1979, testing was done by the school district and Amber qualified for the program. The IEP meeting, which is called an ARD in Texas, was held and CIC was refused. I had prepared by taking doc

umentation from the Office of Civil Rights in Kansas City, MO, in regard to CIC as there had been a case there.

I investigated and advised the school that several schools in the area already provided CIC, among those were Dallas, Fort Worth, Garland, and Terrell. We appealed. Due process hearing was held and we won. We filed civil rights complaint with HEW in Dallas. The Commissioner of Education upheld the hearing officer. Irving appealed. Irving appealed to the Texas State Board of Education who illegally overturned the hearing officer's decision.

We asked for an appeal and were turned down after being informed that there was no provision under Texas regulations for an appeal before the board. We filed in the U.S. district court in Dallas. The judge ruled against our request for an injunction putting Amber into school and in fact more or less dismissed our case. In 1980 we appealed to the Fifth Circuit Court and were heard in June. The case was remanded with instructions, including the fact that CIC was a related service. Irving appealed to the Fifth Circuit Court for a rehearing, which was denied.

In 1981 we finally had our day in court in January. After hearing the case, the judge issued an order to provide CIC while making the final judgment. Amber started to school after the school gave us the runaround the whole first day.

We went back to court for a contempt motion against the Irving School District. Irving had stopped doing CIC. The judge again ordered the school to provide CIC. They did from April through May. In 1981 we had another ARD to outline Amber's IEP for the coming year, including our giving the district new medical forms and prescriptions. The first day of school I was called at my office in Dallas and advised that the school would not provide CIC for Amber, which was due in 30 minutes, the reason for this being that we lived close to the school so that the superintendent said that they were not going to provide CIC. One week later Amber entered the hospital for surgery. I had to ask my friend to provide the CIC when the school refused again. How could I ask this child, who loved school so much, to stay out of school again because of her bladder?

She had already lost time, and wanted to know then why she could not go to school with the other children when we would drive by the school. I told her that the judge had to say that she could go. The first thing that she asked when we went to court was, did the judge say that I could go to school? I did not tell this little 3year-old that the school officials just did not want her in school, but they proved that many times over.

In 1982 back to court for a contempt motion against the school. Irving was ordered to provide CIC again. The school appealed back to the judge and then to the fifth circuit again.

In the fall of 1983, we had our second hearing before the fifth circuit court. Again we won. Again Irving appealed. Irving then appealed to the Supreme Court. And in 1984, on April 13, 1984, our case was heard in the Supreme Court and on July 5, 1984, in a 9 to 0 decision, Amber won her right to go to school with the supportive service of CIC.

However, because of Smith v. Robinson, our attorney fees were denied, even though we had filed separately from the case a 504 complaint with HEW.

I would like to say something at this point about the Department of Education Office of Civil Rights. The people in Dallas did a super job, they made their finding and tried to work with the school. I do not believe that the school ever answered the complaint. The case was referred by the Dallas Office to Washington, asking the Department of Education to have the Justice Department to enter the case.

They refused. However, when the Supreme Court decided to hear the case, the Department of Education in Washington wanted to enter as a friend of the court for the school district. The Justice Department wanted to enter on Amber's behalf, so that no one was allowed to enter a brief.

The Dallas Office was flabbergasted. After all of their efforts and recommendations to have Washington do right the opposite of what Dallas recommended. You can understand if I tell you that I was a lot more than upset.

Our legal costs for the due process hearing, which we won, were less than $1,000. Unfortunately, the school district contested the hearing officer's decision, causing a long and unnecessary and very expensive legal battle.

The cost of our legal fees to finally win our case at the Supreme Court was almost $200,000. Luckily, after the fifth circuit hearing, we were able to get help from Advocacy, Inc., in Austin, TX, or we would have been financially unable to continue to fight for our daughter's rights.

Because they insisted on fighting the original hearing officer's decision and all subsequent decisions in our favor, the school district also spent over $200,000 unnecessarily which could have been used to improve educational programs.

One of the Irving School Board members reportedly told the press that the district had really won the Supreme Court case because they did not have to pay our attorney fees.

School districts, especially in Texas, will go to the ends of the earth to fight parents of disabled children. They know that most parents are already tired from just the care that it takes for a disabled child. Some parents have moved from districts such as Irving rather than try to fight the system. We parents do not have the money to fight the school districts. We are already strapped with high medical costs for our disabled children, not to mention braces and wheelchairs and the like.

If school board members had to pay these legal fees out of their own pockets, instead of using the taxpayers money, it would be a different ball game.

Schools have the attitude that they will not, under any circumstances, give an inch. Not even when they know that the parent is right. They will fight to the bitter end to see that disabled children are forced to accept just anything that they may want to offer. And in our case, they offered no alternative program at all.

It is my belief that the Irving District felt that they would win our case, not on the merits of the case, but on the belief that we probably did not have the money to fight a big school district like

Irving. Besides that, they felt that we would not have the stamina or energy to fight the harassment and still continue the legal battles. Irving was wrong this time. We were very fortunate to find the resource of Advocacy to continue for us after we had already run up a large legal bill. The harassment the school district put my family through would finish people, but from somewhere we found the energy to continue. We knew that once we began this battle if we had to give up, then not only did our Amber lose, but every disabled child in the United States would lose.

We parents have already had to fight to keep Public Law 94-142 when the Department of Education tried to change the regulations enough to gut the law. This would surely have put these disabled children back in the closet with disabled children who in the past years were denied any type of education.

Our disabled children deserve a chance. Surely, if our country can take care of the other countries of the world, we can surely see to it that our disabled children are afforded equal opportunity under the laws of our land. Without the parents being able to recover attorney's fees, Public Law 94-142 is again gutted. School districts want to put a stop to these children having any rights.

Is there really any justice for all? Not without your help, there is not. These kids are super kids and they surely deserve the same chance that nondisabled children have, the right to an education. Believe me, they would not be able to receive the rights unless the law is amended to include the awarding of attorney fees to the prevailing parents or guardians of disabled children.

Thank you again for your work on this committee. We parents appreciate your work, not only for our children, but for all of those with a disability.

I thank you for your time and this opportunity to appear before

you.

Senator WEICKER. Mary, thank you for a very, very eloquent testimony.

We will get to the questions later.

Edward Abrahamson, it is very nice to have you here for these proceedings.

Mr. ABRAHAMSON. Honorable chairman and members of the committee, I am Edward Abrahamson of Sharon, MA, and since my wife Janet is unable to be here today, I will tell you our story about what parents or guardians of a handicapped child must endure in order to defend the right of their children to an appropriate education.

There is a civil war of sorts raging in the countryside. As you hear the names of just a very few of its notable battles; Kruell v. Biggs and New Castle County, North v. District of Columbia, Smith v. Robinson, Tatro v. Texas, Abrahamson v. Sharon School Committee and the Commonwealth of Massachusetts, listen also to the plaintiff musketry of the parents, those folks named before the "versus", followed by the thunder of the defendants' heavy guns, those folks named after the "versus".

How is that our Congress' noble and precious education for All Handicapped Children's Act born of the will of the people, sends our lightly equipped infantry parents against the cannonaded positions of ensconced establishment?