Lyme Disease: School Days’ Maze

Written by Pat Smith, President, Lyme Disease Association, Inc. for an article in the Lyme Times

School districts are subject to budgets constraints, laws, and policies which can often make them unfriendly to parents lost in the maze of obtaining proper services. Here are some tips for negotiating that maze to help children receive the proper accommodations.

Go to the scheduled meeting. Clearly state your child’s problems and how they should be addressed. When any of your requests are denied, ask for the appropriate federal or state law, district policy, school policy or regulation that prohibits them from taking the requested action. State that you want their denial along with reasons, in writing. Ask for the meeting notes. Follow up in writing after the meeting again stating your request for applicable law and reasons for denial.

Do not accept a verbal promise in lieu of a written document. A verbal, Yes, Johnny with chronic Lyme disease will graduate despite the fact he only has 11 credits, is not the same as a letter to that effect. If they are not following the IEP or 504, communicate to them in writing the specifics of the violation(s), dates, and give them a reasonable period of time to correct the situation. Address either the head of special services or 504 coordinator, required nationally, also copy the case manager, guidance counselor, principal, even the district superintendent if this situation has been uncorrected for a long time.

Ask for the district policy books and read through sections which apply to special education, absences, homework, etc. to find supportive policies or dispute their claims. Ask if your child’s individual school has other written policies. Read through all IEP and 504 materials you have been given.

Learn a few educational buzzwords and use them at your meetings. For example, NJ has a “thorough & efficient education” law, language which can often be invoked. Also New Jersey has state law requiring annual Lyme disease in-service for teachers with a student with Lyme. If you find districts are “non compliant” with any law and are uncooperative, write to the proper county, state, or federal agency and indicate the non-compliance.

Child study teams are sometimes following UNOFFICIAL district policies, e.g., they do not want to pay a lot of money for student accommodations. In NJ and probably other states, districts are not permitted to make monetary-based IEP or 504 decisions. If they tell you it is too expensive or you have taped that (if they allow taping in the session, do it only if the district has been non cooperative), use that fact in a letter. Keep in mind that districts get government money for IEP students but not usually for 504 students. Use your state appeal process for IEP and the federal appeals process in each state for 504. Sometimes, after lengthy battles, a letter to a congressman will help, since federal monies may be involved.

If there is a grade dispute while the child is under an IEP/504, request in writing that the district give your child an (I) Incomplete or Medical (M) on grades until the issue is resolved. If the computer will not process that request, ask for a hand printed grade report.

Never act weak in a meeting. Act professional and confident, like you know what you are doing, even if you don’t. Do not initially act adversarial. If the district denies what your child needs, do not back down thinking they will take it out on your child; if they do, you will have a legal case. Hold tough from the beginning or you will be back year after year with the same issues. Never sign anything you are not comfortable with at that moment.

Never give them more information than they ask or are entitled to. While Johnny is on home instruction, do not say, we took Johnny on vacation, or Johnny was outside riding his bike yesterday. Unless there is some specific reason, do not take your child to the meeting. Districts will question the innocent sick child and use that or information you provide to try and support their contention that that child really belongs in school or does not need extensive accommodations.

If a district wants the school doctor rather than your personal one to be the final arbiter on the classification issue, ask for applicable policy and/or law stating that is mandatory. If so, take your case to the state mediator if one exists. Ask what other diseases this has been done for within the district. Is the school doctor the final arbiter in a cancer case or a mono case where extended home instruction is an issue? Is this arbitrarily applied to Lyme disease? Check school policy on the issue.

Find out if the district has a separate special needs PTA group and join. You can also contact a special education attorney or an advocate.

As a last resort but very effective, go to a board of education meeting. You may want to preface your remarks by saying you know the board is there for the good of the children and that you are sure they do not know this is happening (they don’t most likely, unless it is lawsuit time, and they know you are suing the district, in which case this action will probably not work). State you want the comments to be included in the record (minutes). Boards cannot discuss your child’s case there, but you can make statements about your child’s case, e.g., he is being discriminated against, or his IEP not followed. They may try to cut you off by saying they cannot discuss the case. Firmly say that is OK, you just want them to know. You do not have to use the child’s name nor give out a lot of personal details. Contact the local press prior to the meeting and ask them to attend. You will usually get results.

There are many wonderful people in districts. Use them privately to get as much information as possible about how the district generally treats these issues. There are safety nets for those students outside of the box, i.e., Lyme disease, but they may fall through the cracks if you let them.

Ms. Smith also serves as Vice President for Political Affairs for ILADS, International Lyme & Associated Diseases Society and as an advisor to Time for Lyme. She is former 12 year member of and past president of the Wall Township (NJ) Board of Education, when she also acted as a member of the NJ School Boards Association Federal Relations Network. She is past chair of the NJ Governor’s Lyme Disease Advisory Council.