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

Congressional Lyme Disease Forum Hosted by Honorable Rep. Joseph Pitts


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