504/Special Ed Info

504/Special Education Issues

Information provided by experienced Lyme disease patient advocates:

The best organization I know of for ADD is CHADD (Children and Adults with ADD), so you might want to let people know about their website: www.CHADD.org. They were amazing.

There's a wonderful organization called COPAA (Council of Parents, Advocates and Attorneys - www.COPAA.org). It's for people who advocate for the needs of kids with special needs, who are not having their needs met in school (504 plans, Special Ed).

Here’s a sample letter specific to lyme:

Attention: <Principal's Name>

<School Name>

<School Address>

<City, State, ZIP>

RE: Request for ------ insert name-------504 Plan for 2018-2019 school year

Dear <Principal>,

The purpose of this letter is to request a 504 Plan for < NAME /DATE OF BIRTH> for the 2018-2019 academic school year. This patient has been diagnosed with a chronic tick borne illness, resulting in chronic fatigue, seizures, adrenal fatigue and a multitude of other activity limiting symptoms.

<name> will require a shortened school day, with a delayed start. An overview of this condition is contained the the following paragraphs:

Lyme-related cognitive impairment will interfere directly with learning and academic performance. Impairment of attention and concentration results in poor absorption of information from classroom teaching, difficulty with reading and reading comprehension, difficulty completing assignments and studying for tests. Problems with retrieval of information from memory can interfere with performing on tests and class participation. Problems with visual scanning and writing interfere with copying from the board, note taking, and keeping track of homework assignments. Editing of written work and accuracy in math computations may also be affected. Slowed processing or thinking interferes with completing assignments and being prepared for tests. In children with pre-existing learning or attention problems, these will be significantly exacerbated in Lyme disease.

Frequent absences interfere with continuity of learning and result in gaps in the knowledge base. Children who miss a significant number of days consecutively qualify for home tutoring. Children who are very ill and are unable to attend school at all need to be home tutored for long periods of time. This should be scheduled for two hours, three to five times a week, at a time of day that the child tends to feel best, often early afternoon. Although the child may not be well enough on some days to do much in the way of work, the tutor attend anyway and do whatever is possible, even if it is chatting with the child about past lessons, movies or current events. Otherwise, there will likely be frequent cancellations, which will cause frustration for the tutor and isolation for the child.

The child should return to school as soon as he or she is able, on a part time basis. A shortened day as well as a shortened week should be considered. A late start to the day is often helpful, because sleep disturbance is so common. A rest period during a study hall may also be necessary. For other children, arriving late and leaving early will both be necessary. A week with Wednesdays off works well for some children with very limited stamina, whether the attended days are full-length or not. Although this type of schedule is tricky to work out on a practical level, it represents the least restrictive environment for a child with chronic Lyme disease, who would otherwise be unable to attend classes at all.

For children who are able to attend class full time or close to full time, other accommodations will likely be necessary. These can often be done under a Section 504 plan, with arrangements made at the building level, rather than at the district level. Accommodations helpful for children with Lyme disease include: Preferential seating, not necessarily in the front of the class, extended time for classroom and standardized tests, a scribe when a lot of handwriting is necessary, clarification of instructions, multiple choice format to aid information retrieval, a a word bank for writing assignments, a calculator for math tests, assignments presented in writing, class notes and curriculum outlines provided, an extra set of text books to keep at home, a laptop available for note taking and written work, keyboarding instruction, instruction in organizational and time management strategies as well as test-taking and study skills, multimedia approaches to supplement reading assignments and minimized homework.

Children with longer-term illness should be evaluated and monitored by the Special Education team and should have an Individualized Education Plan. Specialized assessment, including neuropsychological evaluation should be utilized as needed. Periodic academic testing should be done to identify lags in specific skill or knowledge areas. The social and emotional impact of the illness must also be carefully monitored and addressed; supportive counseling is often necessary.

Adequate rest and limited stress are critical to the successful treatment of chronic Lyme disease. Thus it is critically important that the student with Lyme be given appropriate and adequate educational support, whether they are able to attend classes or not, during the course of their illness. Meeting the needs of children with chronic Lyme disease presents a unique challenge for school districts, one that requires close communication and cooperation between parents, educators and medical professionals.

The initial 504 meeting should include the presence and input of all school staff members who will have direct supervision and interaction with <Name> , not limited to nursing staff and the Child Study team responsible for implementing the 504 Plan.

.As you are aware, students with 504 plans are eligible for extra curricular activities. His medical team and < name> parents request that a 504 Team Meeting be scheduled prior to the start of the school year.


Dr. < name>, MD