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Pennsylvania – Congressional Lyme Disease Forum Hosted by Honorable Rep. Joseph Pitts

June 12, 1999

Congressional Lyme Disease Forum Hosted by Honorable Rep. Joseph Pitts

making treating decisions against Lyme patients. One example I heard was of a podiatrist on the insurance company staff who refused to approve antibiotic treatment for Lyme.

On the surface, the rationale for all this nonsense appears to be that these patients don’t look sick, and sometimes, they don’t act sick. Or they may be sick one day and fine the next. Antibody testing is unreliable at best. Antibiotics appear to control, but do not necessarily eradicate, infection. Psychiatric symptoms and behavior problems are often overlooked as Lyme manifestations, although current literature is replete with examples of psychiatric illnesses whose origins are probably bacteriological. To a casual observer, these may appear to be reasons to deny treatment. After examining existing medical literature however, I think the conclusion is obvious that human life once again has been sacrificed at the altar of the almighty dollar.

These dogmatic attitudes carry over into the school buildings where administrators are constantly seeking ways to trim school budgets to appease the public. Now we have these children who are fine one minute, sick the next, not performing in the classroom. They are late for school because they cannot get out of bed in the morning. Maybe they are acting out. They are labeled lazy, uncooperative, faking. Johnny cannot focus on his work no matter how hard he tries. The district says Johnny has ADD, Attention deficit disorder. Jane cannot think. She walks around in a fog, barely getting through the day. She is labeled neurologically impaired. 15 year old Ben reverses his letters and cannot spell. Officials are puzzled. He won the state spelling bee 3 years ago. Fred tries to do a shop project. He does a fine job of cutting and putting the project together but he refuses to put his plans on paper. The teacher says he’s defiant and thinks he knows everything. What do these children all have in common? Each has Lyme disease that has manifested in a different way. Each has gone unrecognized as such by the school.

Districts often try to bully parents by sending letters stating the student will be brought up on truancy charges or the student will not get course credit because of the number of absences due to Lyme. So far, all students whom I have dealt with have received full credit.

There are 10’s of thousands of stories out there, and here are four of them.

The last few weeks of senior year, Mary, in the top 1% of her class, was told they would not let her walk in the graduation ceremony because she had a small amount of work left that she could not finish due to her illness. Most of it was repetitious and not necessary to meet the curriculum goals and objectives.

Ed had been on home instruction all during high school. The district forced him to take Spanish I three times. He completed the course the first two times but was too sick to take the final exam each time. He balked at retaking the course the third time. He was never able to fully complete the remainder of his courses for the same reason. At the end of senior year, he had only 11 credits. His IEP was never fully implemented. He had however, passed a state mandated graduation test. The district was refusing to allow him to graduate.

Kevin scored almost perfect on his SAT’s. His IQ exceeded 160. The district refused to allow him to take Advanced Placement courses. The department heads pompously argued that students on home instruction did not have a right to take these courses, the content would somehow be diluted. They felt the student was getting a break being on home instruction. Once, when Kevin was bedridden, the district requested that he report to school each day that he felt sick so that the school nurse could determine if he were capable of coming to school that day.

Colleen was an honor student out of school four years–three of them spent in intense seizure activity. The district refused to allow her to take honors courses because she was on home instruction and refused AP courses, because they could not fathom why a sick person would want to take them. A teacher once called her at home and insinuated she might be cheating because her grades were so good on home instruction. The math chairman initially refused to allow her to take two math classes in one year to try and makeup a missed course, an option available to all in-school students.

She was able to go back to school for a week. This was very important for her to socialize with her peers. She went back, and one teacher sent her to the library for the period because she couldn’t possibly know what the class was doing. Many times her mom cancelled home instruction with the teacher at the door, because she was in a seizure. She could not read for 3 years. At a meeting, her mom explained her myriad of problems to the honors English teacher and asked for the necessary time extensions and a reduction of workload with demonstrated mastery of the subject. The teacher got up, said no one got special privileges in her class, and Colleen still has to do the same work at the same time as everyone else, and she stormed out of the meeting. The honor society refused her admittance even though she ranked in the top 5 of her class, because she had no after school activities! She had no contact with peers for 4 years.

In the case of Mary’s walking in the graduation ceremony, due to my intervention, the district extended time to the day before graduation for Mary to turn in her missing work. This was still not enough time. Mary’s mom took the district to court. The ALJ hearing was scheduled 3 days before graduation. Due to the refusal of the judge to allow me to present evidence about the district’s unfair 4 denial, the ALJ ruled to uphold the district’s decision. There was no time for a legal appeal. Mary is one tough lady. Sick but motivated by anger, Mary stayed up for 48 hours and finished the work the day of graduation and not only walked in the ceremony but graduated. She’s attending college in PA today.

Ed was able to graduate after my intervention, because I pointed out to the district its improper handling of his educational program. Additionally, I was able to get the district to pay for 2 years at a community college in lieu of the parents taking costly legal action against the district, a case which undoubtedly would have been lost by the district because of their inept handling of his education.

I told Kevin’s district it was unthinkable that an individual with Kevin’s intellectual ability would not be permitted to take AP courses. Besides the fact the denial was not legal, it would be an extreme embarrassment to the district since Kevin was now a National Merit Scholar! Kevin not only took his AP courses at home, but when I stopped by one day, I found him teaching one of his teachers. He just graduated Phi Beta Kappa from Drew and is heading for Dartmouth graduate school.

Colleen took honors courses at home, including honors biology on a picnic table in her back yard and she also took three AP courses. She doubled her math courses senior year. She not only graduated with an A average in the top few % of her class but received money from Johns Hopkins University where she has been a dean’s list student who just finished her junior year, with an IV in her arm. After she graduated high school, her mom was able to get the district to review and change the honor society regulations to permit a classified student to be inducted into the honor society with a waiver of that one provision about school activities. The mom, then a board of education member there, was informed that just because the regulation was changed, she shouldn’t think the committee of teachers who vote admission will ever let anyone like that in.

These students are Lyme success stories. Sadly, for each one of them, there are dozens more who have neither a parent nor an advocate to fight for them. While they are struggling for their very lives, districts who should be throwing them life preservers, are instead holding their heads under water and forcing them to struggle harder.

Not all districts or all individuals in districts are so inhumane. Many times teachers will recognize the seriousness of the illness and try to advocate for the student. Unfortunately, districts have a way of silencing non-conforming employees.

The whys and whats of the situation are obvious. The hows of dealing with it are not so readily apparent. All districts that receive federal monies must comply with the provisions of 504, civil rights legislation. Disability under 504 covers any student who has a physical or mental impairment, or who has a record of having a substantial impairment or is regarded as having a substantial impairment, including students with Lyme disease. It covers all classified students. Students basically have the same rights whether classified or under 504. Unfortunately, the law requires parent notification of rights for a classified student, yet under 504, no notification of rights is necessary. Districts really do not understand their obligations under this act. Often, I must go in and explain to them what their requirements are. This is an embarrassment to them, and they tend to get attitudinal about the entire situation.

Districts are required to have 504 coordinators, but rarely does anyone know who they are. Complaints of non-compliance must be filed in the civil rights office of each state, but try finding that out if you are a parent. Through each state, the federal government has an obligation to ensure that each district consistently complies with 504. If the district is constantly violating this law, its federal funding should be decreased or curtailed until it produces a corrective action plan. Give parents a well publicized 800 number in each state to report violations or get information. Do not leave districts out of the loop either. Provide them with inservices on the implementation of 504.

Our children are sick. They can’t get diagnosed. They can’t get treated. They can’t get treatment paid for. They have asked for little and society has given them nothing in return. We may not be able to save their bodies but with your help, maybe we can save their minds. Thank you.

Presented to the Honorable Joseph Pitts, US Congressman, Pennsylvania, June 12, 1999