Howell, NJ – Seminar for Parents, Educators and School Officials

March 31, 1998

Howell, NJ – Seminar for Parents, Educators and School Officials

Lyme Disease and the Schools 1998 Howell High School Pat Smith

Between Jan 1, 1996 and December 31, 1997, NJ had almost 4000 newly reported cases of LD. These cases are only the ones that fit the Centers for Disease Control, CDC, criteria for surveillance. Many more people were actually diagnosed by physicians with estimates from some medical professionals indicating that the 4,000 reported cases represent only 1/10 the actual cases in NJ. NJ has traditionally ranked either third or fourth in the nation for reported LD cases, many of which are children.

When children develop chronic Lyme, they are not only fighting disease, but also they and their parents must fight to get a proper education. Numerous school districts are unaware of the problems of LD and its potential psychiatric manifestations. Therefore, instead of getting proper treatment for the disease causing the symptoms, the children are being ignored, punished, or ostracized. Sometimes children are getting improperly classified or not classified at all because some individuals think Lyme is not a serious disease.

In 1992, I prepared and presented to Congressman Smith, the CDC, and the NIH, National Institutes of Health, a 9 district school study showing the impact of Lyme disease on children. As a result of my study, the CDC came to NJ and studied Lyme in 5 of those 9 Monmouth and Ocean districts. This Oct. 1992 CDC study of 64 students showed that the median duration of illness at the time of interview was 363 days, and the mean number of school days missed because the child was too ill to attend was 103 days (with a range of 2 to 548 days). The median duration of home instruction was 98 days, with a range of 5 to 792 days.

Another study by NJ family therapist Maggie Smith shows an 11.2 months average school absence due to Lyme disease.
The cost estimate available for medical treatment for 54 of the CDC study children was $5.2 million, and more than one-third of families of the affected children had 3 or more members who had at some time been diagnosed with Lyme, and 40% of the mothers were LD diagnosed. 78% of the parents stated that their children experienced a fall in grade point average during the time of illness, 79% experienced a decrease in the number of friends. A quote from the CDC study sums up the magnitude of the problem: “Perhaps the greatest costs incurred by the study children were the social costs of the illness and its treatment. Schooling and extra-curricular learning activities were seriously interrupted for most children; often, children spent large blocks of time as semi-invalids, isolated from social groups and missing out on cultural, sports, and social activities. School performance of nearly all children fell, sometimes drastically, and in several instances was said to interfere with selection by colleges and universities.”

In NJ, school districts are required by 18A to train annually any staff members who work with children who have LD. There is a statewide curriculum that was prepared by the NJDOE and distributed in 1995 to all NJ districts entitled “Making a Difference: Lyme Disease Prevention Education Guide.” 18A encourages, but does not mandate, that districts in a high Lyme disease incidence area adopt the curriculum guidelines. For the most part, districts are unaware of the mandatory legal requirement for teacher training and unaware of this curriculum.

For several years, I have been working with districts statewide training teachers and acting as an advocate in IEP meetings for children with Lyme. This is the fifth statewide school conference the LDANJ has hosted in NJ.
Schools usually either classify children with Lyme as chronically ill or they develop 504 plans under federal legislation. Classification costs the district a lot more money, however, they do receive some state aid for that. 504 students do not usually generate additional aid for the district but the identification process is simpler. Districts need to understand that parents/students have similar rights under 504 as they do under the classification with an IEP, Individualized Education Program. Often, children exhibit behavior problems that are associated with Lyme disease and these go unrecognized by districts. At times, children are being improperly classified. For example, they have psychiatric or neurologic manifestations and they are labeled NI (neurologically impaired) or ED (emotionally disturbed) when perhaps a multiply handicapped classification which includes chronically ill might be necessary.

The new special education guidelines being developed could be a problem for children with Lyme whose designation is often neurologically impaired, since the definition of neurological impairment will be more strictly defined to agree with federal guidelines.
Children are identified with ADD, attention deficit disorder, medicated for those symptoms, and no cause is ever sought. Districts need to carefully evaluate any child who has a history of Lyme and is experiencing neurologic, psychiatric, and attention deficit problems to ensure that the problems are not organically produced by Lyme disease.
Fluctuations in symptoms present another problem. Lyme symptoms can vary from day to day and even hour to hour. Children with LD on long term home instruction may need to have a school program which enables them to come to school when feeling well and receive home instruction when they are not. They should not have to wait 10 days or any set number of days to receive the home instruction after each absence. Flexibility must be written into the IEP or 504 plan.
The number of hours of home instruction needs to be adequate to provide a thorough and efficient education. Often, districts only provide 5 hours a week to a child, telling parents this is all they need to provide by law. Classified children may receive 10 hours of home instruction per week. 5 hours is certainly not adequate to provide a thorough and efficient education for children on long term home instruction. Specify the hours in the IEP or 504 plan.

Teachers must utilize alternative instruction strategies such as testing orally, breaking up periods of instruction, taping books and lectures, and allowing extra time for assignments. Additionally, they must pay careful attention to students’ physical needs such as light and sound sensitivity and the need to get up and move around.
Recurrent short-term memory problems, mental confusion, and exhibition of dyslexic type symptoms are not uncommon and interfere with the learning process. A number of peer-reviewed articles by Dr. Dorothy Pietrucca, pediatric neurologist, and Dr. Brian Fallon, psychiatrist, address these issues in school-aged children and can be used to reinforce the learning problems associated with Lyme.

Parents need to work with the school and should not be intimidated by district officials. I have seen children who have missed years of school and been able to graduate with their peers, and I have seen others who have fallen behind and not finished. The difference is usually the parent’s involvement. And schools often will cooperate after they are inserviced and understand the severity of the problem.

Childhood is a time in which children should be giving reign to their natural curiosity and exploring the world, learning how to develop relationships with their peers, and enjoying life before they are burdened with adult responsibilities. Because of intense physical and emotional pain, Lyme children do not live life, they exist. Someone near and dear to me with Lyme wrote the following poem 4 years ago at age 16. It is entitled “The Eternal Nightmare.”