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A Board of Education Member on Lyme in Schools

Lyme Disease in the Schools: From a Board Perspective

By: Pat Smith, President, Lyme Disease Association

January 20, 2006 – Twelve years on the Board of Education in my community in New Jersey taught me one thing:  board members do not know, cannot know and should not know everything that happens in a school district.  Their job, by and large, at least in New Jersey, is to ensure that the superintendent runs the district well and administers board policy.

Parents can use the board in the process of obtaining a proper education for their child, especially one who is classified with an IEP or is under a 504 plan. However, there are things you need to know first, and steps you need to take before you consider approaching the board.  I am familiar with the legal process governing school districts in New Jersey, NJSA Title 18A.  Each state has its own set of statutes to govern the operation of school districts and boards of education, which can probably be found online if you need to refer to them.

Before you approach your board, get a list of procedures that the may district have in place for parents who want to complain about an issue, and also get the “chain of command.”  It tells you who is supervised by whom. Follow it before taking other actions.  For example, if your complaint is with the teacher, your first step should be to sit down with the teacher and try to work things out.  Explain to him/her in a non-confrontational way the problems your child is having in school due to Lyme disease.  If the issue is not resolved with the teacher in a face-to-face, write a letter.  Always document complaints in writing.  Next step up is usually the building principal  A personal meeting is good, then put complaint in writing if not resolved. At this stage, you should also be copying any communications to the person in the special services department who is the case manager if your child has an IEP (Individualized Educational Program) or to the 504 coordinator if your child is covered under 504.  Every district in the country must have one. Ask for a parental rights booklet, NJ has one and most other states do, too.

If your problem is with the child study team/504 coordinator, then you meet with them to discuss the issue.  If it is not resolved at the table, your complaint should be put in writing and copy whoever oversees the child study team, e.g.,  a special services director, an assistant superintendent, or in small districts, the superintendent  him/herself or your state’s equivalent (chief school administrator, CSA).

Explore help options from other entities. Check if there is a parent teacher organization specifically for students with special needs.  They may be able to guide you.  If there is not one in your school, check the other schools in the district.  Also check to see if you have a county office of education, or perhaps your state has another governmental jurisdiction (e.g. parish) which may have jurisdiction over the district and it may be able to help you. Call them to see what they can do.  Copy them on correspondence from this point forward. Sometimes they will step in and investigate a district’s special education department if the complaint is serious enough, or if others have similar complaints. Write to and/or call the office of the State Commissioner of Education at your state department of education. 

If your issue is with board policy─the policy is interfering with your child’s ability to get accommodations─ask for the written policy, do not accept the district’s word there is a policy. Make sure the policy applies to special educations students, sometimes there are separate policies for them.  If it appears your student is covered under a district policy and you feel it is discriminatory because of your child’s condition, write to the board and state that. Find out how to get school policies changed.

Your next option might be to go to the elected or appointed board of education.  If time is not a factor, you might want to sit in on a few board meetings to see how they operate.   Check out the board committees.  There may be a special education committee or policy committee who can help you.  Remember that board members are people like you, members of your community who are trying to make sure children get a proper education. An elected board will probably be more responsive than an appointed one, since they answer to you and to your neighbors.

Most, if not all states, have privacy laws, so boards cannot discuss your child’s case publicly.  You can first try to call some of the board members (districts have listings of members) and explain your problem to see if you can find a sympathetic ear.  If that does not work, see if you can attend a committee meeting.  If not, you may want to go to a meeting of the board and during the public comment time, stand up, and speak generally about your child’s problem.  Some districts require you to state name and address for the record. Ask if that can be waived for privacy reasons, but you may have to give it. Remember this does expose your child to public scrutiny, although you are not giving your child’s name, so you need to weigh the pros and cons. Often however, when you begin to speak and say that you feel your child’s rights are being violated, or the district is not providing appropriate services to your child, the board will immediately say it cannot discuss this issue in public, and it will often direct the CSA to set up a private meeting with you.  Now you are in a stronger position, because the board is aware there is a problem and it is going to want to hear from the CSA that the issue has been favorably resolved.   You have put them on notice that you are not afraid to confront them about the issue in public, and they do not want you to come back publicly again.

Contacting the press is sometimes a last resort parents use when they feel they have exhausted all other possibilities and still cannot get their child’s situation resolved. Districts do not like adverse press.  Children with problems who are not being helped make a great story for them. Again, there are privacy issues involved so before even considering this action, assess those factors and the impact on your child.

Remember, every state has an address for appeal of 504 cases, since this is federal legislation. Under an IEP, many states have an appeal or mediation process you can go through. Use it. Bottom line, if things go totally awry, you can consider taking the district to court.  Districts do not like to go that route because of expense and their fear of precedence.  Often they will settle out of court.

The choice is yours to make, no one can recommend or say which of these actions, if any, will bring positive results, but inaction or allowing an uncooperative district to control your child’s fate will not get the services your child is entitled to and needs.  “The squeaky wheel gets the grease” is a truism in the educational world.

Editor’s note: Ms. Smith is a former 12 year member of the board of education in her community and former board president.  She was an officer in the Monmouth County School Boards Association, active in the NJ School Boards Association committees and at the federal level. She also sat on the [NJ] Governor’s Lyme Disease Advisory Council when it worked on the NJ Lyme disease curriculum, Making a Difference: Lyme Disease Prevention and Education Guide, which was adopted statewide by the NJ State Department of Education. It is the only statewide curriculum in the country for Lyme disease.  Former presidents of the LDANJ, Kerry Fordyce, and of the NJ Lyme Disease Coalition, Peggy Sturmfels, were instrumental in this process.

The Lyme Disease Association of New Jersey, now LDA, was successful in having the following laws adopted in New Jersey.
New Jersey Statutes Annotated 18A

18A:35-5.1.    Lyme Disease curriculum guidelines 
   1.     The Commissioner of Education, in consultation with the Commissioner of Health, shall develop curriculum guidelines for the teaching of information on the prevention of Lyme Disease within the public school health curriculum. The guidelines shall emphasize disease prevention and sensitivity for victims of the disease.  The Commissioner of Education shall periodically review and update the guidelines to insure that the curriculum reflects the most current information available.    L.1991,c.488,s.1. 

18A:35-5.2.    Availability of guidelines 
   2.     The commissioner shall make the curriculum guidelines available to all school districts in the State and shall encourage their adoption by those districts which are located in areas of the State which have a high incidence of Lyme Disease.    L.1991,c.488,s.2. 

18A:35-5.3.    Guidelines for, training of teachers instructing infected students 
   3.     The Commissioner of Education, in consultation with the Commissioner of Health, shall also provide curriculum guidelines for the training of all teachers who instruct students with Lyme disease which emphasizes the special needs and problems of students with the disease, in order to provide information about how best to teach those students.  Each school district shall annually provide training to all teachers who instruct students with Lyme disease, based upon the guidelines.   L.1991,c.488,s.3.