Education and JA: Get the Facts on 504 Plans and Juvenile Arthritis - by Ashley Boynes-Shuck

Every child has unique and specific needs when it comes to their education — but children with conditions such as juvenile arthritis may have an even more difficult time at school. Whether it is carrying loaded backpacks or heavy books, having trouble participating in gym class, missing school altogether, or sitting for extended periods of time in uncomfortable classroom chairs, it sure isn’t easy to be a kid with arthritis.

Knowledge is key. It is important that teachers, faculty, and staff know what juvenile arthritis is, once a student is diagnosed. Juvenile arthritis is a general term for all types of arthritis, spondyloarthropathies, connective tissue diseases, and related conditions that occur in children from infancy through the age of 18. Juvenile arthritis normally strikes before the age of 16, and affects girls twice as frequently as boys. The levels of disability or impairment, strength or mobility, vary from patient to patient.

According to the Arthritis Foundation, “Juvenile arthritis, like other chronic illnesses in childhood, can have an impact on a student’s school performance. Because school is a child’s occupation, it is very important to address the special needs of children with chronic illnesses to ensure their best opportunity for success in the school setting. Children with arthritis should attend school. Like other children with chronic illness, modifications may need to be made to make the school setting accessible for the child with juvenile arthritis.”

There are many modifications or adaptations that can be made for the student in school. Children with arthritis may need to take advantage of some if not all of the following options:

 

• 504 Plan / IEP
• Special Education
• Modified Gym Classes
• Flexible Attendance Schedule
• Leniency on Tardiness Due to Morning Flares
• Support from Peers, Teachers, Administrators
• Special Lunches (for some JA patients, certain foods can trigger flares)
• Access to a Guidance Counselor or Therapist
• Participation in Sports with Modification/Doctor’s Permission
• Confidence-Building Exercises
• Vocational/Educational Assistance or Guidance
• Communication Between Teacher & JA Family
• Compassion from ALL Parties Involved!

Some children may not require any special attention at school. However, for some, it is a reality. According to the Arthritis Foundation, “the following options should be made available to children with arthritis:

• Regular education: In the traditional educational setting, the student is assigned to a classroom by grade level. Modification may be needed to this program, especially when the child is experiencing a flare.
• Regular education with modifications: The individual teacher can make modifications in the student’s classroom program. A more formal method is to go through the local school student support team to develop an individualized education program (IEP) or 504 plan, while accessing the student’s rights through Section 504 of the Rehabilitation Act or through IDEA (Individuals with Disabilities Education Act).
• Hospital and homebound services: Students who have frequent or extended absences may qualify for a teacher to work with them at home or in a hospital setting. This is typically established by contacting the Hospital/Homebound Coordinator in your school system or through the special education program.
• Local student support team: The student support team or similar group is composed of teachers and administrators in the child’s school. This group supervises plans for modifications of the regular education program. Many states require that students first be processed through their local school and that all modification options be exhausted prior to referral to special education. While notes and documentation are made about the student, some modifications are not legally binding. Please check with your local school principal to see what support efforts your school offers.
• Modifications through Section 504 of the Rehabilitation Act: Students with special needs have the right to have needs in their educational program fulfilled in the regular classroom setting. The modifications listed in the section “Possible Modifications to the Student’s Educational Program” and implemented under 504 are legally binding. A student can also be served in the regular classroom setting under an Individualized Education Plan (IEP). Most students with arthritis qualify for services under the category of “Other Health Impaired.”
• Special education: About 27 percent of students with arthritis receive modifications through special education. Typically, they qualify for services in the Other Health Impaired category, because juvenile arthritis is a medical illness that can impact a student’s strength, endurance and stamina. To qualify for that category, a letter from the student’s physician is needed to identify the student’s medical diagnosis and how the disease impacts educational functioning.

When a student qualifies for special education services, an Individualized Education Plan (IEP) is written that delineates specific goals, objectives and modifications for the student’s school program that are legally binding.

Physical and occupational therapy are typically considered ancillary services in the school system. They are intended to support a student in an educational program. This is slightly different than a medical model, which intends to provide rehabilitation.

To access special education services, contact the Other Health Impaired Coordinator or Director of Special Education in your school system. You can also check with your doctor or your local office of the Arthritis Foundation by using our convenient zip code locator.”

This document may also help: The ABC’s of 504 Plans. It is worth a read and discusses what 504 Plans are, and how one parent helped her daughter to get one at her school.

No child with arthritis, or parent of a child with JA, should face any kind of discrimination or contention from a school district when it comes to making changes or accommodations for a child with arthritis or other disability. 

Arthritis Today states, “If you have encountered resistance when it comes to getting your child’s school to make appropriate accommodations for her, you should know the law is on your side. Section 504 of the Rehabilitation Act of 1973 specifies that no one with a disability can be prevented from participating in federally funded programs – and that includes elementary, secondary and post-secondary education. Under the law, chronic conditions such as juvenile arthritis (JA) fall into the disability category.”

This checklist can help you decipher whether or not your child should have a 504 Plan at school, and this article has even more information about enacting one. 

As the wife of an educator and having been a child with juvenile arthritis, I recognize the importance of these kinds of options in both school and in the workforce. It is important that teachers and fellow students understand the condition so that the child does not feel isolated or looked down upon — this is important, too, in the adult world. 

No one should face discrimination for their illness or disability, and it is important that parents of Juvenile Arthritis patients – as well as adult patients with arthritis – know that there is  help available to help you live the best life you can, even with arthritis.

For more information on getting a 504 Plan or other accommodations for your child, please contact your school district, the U.S. Department of Education, or, your local Arthritis Foundation office.

And good luck! Remind your child that there is nothing wrong with being different – we all face unique struggles and we all have unique gifts to give.

Be Well,

Ashley Boynes-Shuck

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