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Prevention Video for Kids!

Watch Tick Video for Kids

Acting under the auspices of an Environmental Protection Agency grant, UMDNJ compiled an expert team to develop the video, TickLES (Tick Learning and Education for Schools), developed especially for younger elementary school children. LDA was a project collaborator and is responsible for hosting the TickLES video on its website for use by the public, for free.

TickLES Video 

 

 

 

 

 

 

 

 




What Every Parent Needs to Know About Educating Their Child With CLD

Note: 2 pages total. Scroll or Hover at bottom to Click page numbers.

Tagliabue_What Every Parent Needs to Know




Notification of Field Trip – Tick Alert

Below is an example of a possible field trip form that could be developed by your school to send home when children are going on a trip where they could encounter ticks. 

 

(NOTE: The Lyme Disease Association Inc. does not make recommendations to use or not use repellents. It is an individual decision. Check the EPA website for information on repellents.)

LDA Notification of Field Trip Form 2021




Disability Laws

There are a number of federal laws that protect individuals with disabilities including the ADA, ADAAA, and the IDEA, the latter which ensures children with disabilities get a free public education based on needs.  Section 504 of the IDEA is probably the most known portion of the law. 


Americans with Disability Act (ADA)  The Americans with Disabilities Act (ADA) is a civil rights law that prohibits discrimination against individuals with disabilities in areas including employment, schools, transportation, public accommodations, telecommunications and access to state and local government services. The ADA is divided into five titles (or sections) that relate to these different areas of public life.

The ADA gives protections against discrimination to Americans with disabilities similar to the Civil Rights Act of 1964, which protects individuals on the basis of race, religion, sex, national origin, age, sexual orientation and other characteristics. ADA disabilities include both mental and physical medical conditions.

American Disabilities Act Amendments Act (ADAAA)  The ADA became law in 1990. In 2008, the Americans with Disabilities Act Amendments Act (ADAAA) was signed into law and became effective on January 1, 2009. The ADAAA made a number of significant changes to the definition of “disability.” The ADA does not contain specific special education rules or requirements. The IDEA, below, addresses those educational issues in detail. However, the ADA will definitely have an impact on education. Some of the ways are outlined below. The ADA works in concert with other state and federal laws affecting the education of students with disabilities. In some instances there will be duplicate coverage and an individual situation will be covered under more than one law, such as IDEA. When this happens, whichever law or portion of a law provides the greatest protection for the individual with a disability will prevail.

Individuals with Disabilities Education Act (IDEA) The Individuals with Disabilities Education Act (IDEA) is a law that ensures children with disabilities nationwide, from birth to age 21, a free public education tailored to their specific needs. IDEA is composed of six elements: Individualized Education Program (IEP); Free and Appropriate Public Education (FAPE); Least Restrictive Environment (LRE); Appropriate Evaluation; Parent and Teacher Participation; and Procedural Safeguards. IDEA addresses educational issues in great detail and includes Section 504 of the Rehabilitation Act. 

Disabilities Under Section 504 The document in the link below was developed by the NJ Department of Education, but IDEA, Section 504 of the Rehabilitation Act, applies to everyone indicated in the document, not just those in NJ. There are two requirements to get a 504 plan: a child has any disability under 504 and it must interfere with the child’s ability to learn in a general education classroom.  The 504 definition of disability is broader than the IDEA definition.  A 504 plan  is often used in schools to cover students with disabilities who are not covered under an IEP, Individualized Education Plan, a legal contract.        Click here for IDEA, Section 504 document

Section 504 and IDEA Differences and Similarities (verywellfamily.com)

504, IDEA & IEPs: I know what my child needs to be successful in school, but what are these numbers and letters all about? by Alfred C. Tagliabue, M. Ed.

Individualized Education Program (IEP) To qualify for special education services, a student must meet two criteria–formal diagnosis with a disability defined under the IDEA (see above) and determination by the school that the student needs special education services to learn the general education curriculum.  Under an IEP, the law requires placement in the least restrictive environment, which means either in a general classroom with services and accommodations  or in a special education class. An IEP ends with the child’s graduation, and a transition plan is required to be developed by the IEP team.       Click here for IEP Information

Archived: Guide to the Individualized Education Program


For More Information

For more info on IDEA, see U.S. Department of Education website

For more info on ADA see U.S. Department of Education website

Disability Laws, Regulations, and Guidance | HHS.gov

Home | U.S. Department of Education




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. 

 

 

 

 




IEP or 504 Plan for Students with Disabilities

Lyme and Kids in School

The following information is from the District of Columbia (DC) state board of education regarding differences between an Individualized Education Program (IEP) and a 504 plan for a disabled student. This document can provide some beginning guidance for parents of children with Lyme disease as a basis for what schools may need to provide. Different states can have additional safeguards.

See Office of the Student Advocate: Understanding the Differences: IEP vs. 504 Plan

In addition, see article by Alfred C. Tagliabue, M. Ed., Director of Student Personnel and Community Services, Jackson Township, New Jersey (Retired):
504, IDEA & IEPs: I know what my child needs to be successful in school, but what are these numbers and letters all about?

 




Tickmojis: Get Yours Free Today!

Fifteen-year-old Olivia Goodreau, founder of the Lyme advocacy group, LivLyme Foundation, has introduced the very first emoji icons to feature ticks called “Tickmojis” as a way to educate and spread awareness about TBD. Goodreau’s tick emojis illustrate ten of the most common tick species found in North America and were verified by the Centers for Disease Control (CDC).

“Our LivLyme Tickmojis are a way to have fun and laugh while promoting awareness of a very serious threat,” said Olivia. Previously, the young advocate developed a free mobile app called TickTracker that enables users to find out what kinds of ticks are found in their area, report bites, and upload photos in an effort to help scientists track tick populations.

Watch Olivia promote Tickmojis.

Mobile users can download the free “Tickmojis” at the Apple app store, or on the TickTracker and LivLyme Foundation websites.




LDA Analysis of Lyme Disease Data by Age from 2001-2017

Click here for pdf of pie graph




Brian Dashore Guest Blog

May Awareness LDA Guest Blogger

Dashore.SqBrian Dashore is a 17-year-old teen who has had Lyme Disease, Mold Biotoxin illness, and other co-infections. He has been undergoing treatment for eight years with multiple world-renowned doctors. Brian is the son of Jodie Dashore who is a well-known doctor in this field. He recently established a website called teenlymehub.com with a Facebook group.  He will be talking about the educational aspects of a child with Lyme Disease.

How My Differing Childhood Experiences Impacted My Educational Life

I clearly recall running at baseball practice when my left leg started to drag. I Brian Dashore with Congressman Chris Smithwas only 6 years old, and I just kept trying to run. A burning sensation ran up to my pelvis. My coach thought I pulled a muscle and sent me home.

When I arrived home, my mom, a neurologist and naturopathic doctor, evaluated me. She couldn’t find a reason for the pain and near paralysis of my leg. We traveled to Boston to see her good friend, an orthopedic surgeon at Harvard. After a battery of tests including nuclear full body bone scans and 20 tubes of blood, they put me in a wheelchair.

The results were inconclusive.

We saw nineteen specialists before receiving a referral to a pediatric Lyme-literate specialist. I was diagnosed with Lyme disease, Bartonella, and 11 coinfections.

By this time, I had also developed several other symptoms. My face began to grimace and twitch. It felt like bugs were crawling under my skin and my brain was shivering. I also gradually grew mentally and physically weaker. I frequently lost my balance and had an assortment of cognitive issues. My anxiety increased and sleep brought on night terrors.

The pain and dragging of my leg meant that I was still in the wheelchair when I returned to school. My immune system was also weak and reactionary, so I also had to wear a mask in the hallways at school.

These presented their own world of challenges. I frequently faced bullying on the playground. The school bus rides were full of bigoted, discriminatory, and snide remarks. My guidance counselor suggested sharing my condition with my classmates might help.

I stood in front of my fourth-grade class and spoke about my condition. It was a turning point for my classmates and me. They shared that they were afraid to “catch” my motor tics, blinking eyes, head nodding, vocalizations, limp, back pain, and limited range of motion in my head and neck.

Speaking in front of my class, opened the discussion to understanding. I think for fourth graders is a huge milestone, and it seemed to help.  Some of my classmates started steering my wheelchair for me. Others carried my bag. A few even came over to my house for playdates. That moment also taught me that I can’t rely on others to advocate for me. I need to be able to bring change to my own world.

My physical limitations extended into academic challenges too. When my treatment began, the school provided academic accommodations. I struggled with handwriting, math word problem, focus, and concentration.  Soon enough it felt like the fog lifted. I was able to understand and grasp things that had been difficult. Many of my physical issues were also diminishing and vanishing.

As I reflect back, it’s been a long journey. There is still more work ahead, but I have goals and feel I can achieve them. I’ve had the good fortune of growing up around my mom’s practice and the work of her mentors. My involvement in the Lyme community also opened doors for me. I’ve spoken alongside Congressman Chris Smith, Dr. Robert Bransfield, and Mrs. Smith.

I’m entering my senior year at a rigorous pre-med integrated health and science high school in the fall. So, I’ll spend my summer working on my goals. I’m sharing my story at AutismOne in Chicago. I need to decide where I will apply to medical school. Helping others is important to me, so I’m also active in my online support group, TeenLymeHub which is featured on my website teenlymehub.com.

 

 

 




ABC’s of Lyme Disease LDA Pamphlet

Written for Parents & Educators

Current research indicates that the longer a tick is attached, the greater the risk of infection. Lyme disease bacteria can enter the central nervous system within 24 hours after a tick bite. Failure of parents and teachers to recognize Lyme disease early in its course can result in a child developing a chronic difficult to treat infection in the brain, eyes, joints, heart and elsewhere in the body. Free (shipping costs for large quantities)

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