Assistance at school for children with lupus

Lupus and the medicines used to treat it can affect your child at school. Be your child’s advocate by helping people at school understand what your child needs to succeed. Learning about how lupus may cause problems for your child in school and how to work with the school to get the support that your child needs is an essential first step.

How can lupus cause problems at school?

Having lupus can make a child’s everyday life challenging, including school. Symptoms like joint stiffness, pain, fatigue, or confusion can make simple tasks difficult — and sometimes impossible. Since these symptoms aren’t visible, the people at school may have trouble understanding how they make your child feel.

Symptoms of lupus that may affect your child in school include:

• Fatigue (feeling tired often)
• Pain
• Stiff or swollen joints
• Sensitivity to sunlight or fluorescent light
• Trouble concentrating or remembering

Your child may also have challenges avoiding lupus triggers at school. Triggers can make symptoms appear or get worse. Some common triggers of lupus symptoms include:

• Infections
• Exhaustion
• Physical or emotional stress
• Ultraviolet (UV) light from the sun or indoor lighting

Students with lupus may also experience:

• Absences from school and extracurricular events due to health complications and treatment needs
• Limited ability to participate in school activities
• Social isolation or teasing
• Hair loss and changes in physical appearance due to treatment side effects

What can be done to help a child who has lupus succeed at school?

If your child experiences any learning problems at school that are caused by or related to their lupus, they may need extra assistance or adjustments at school. Changes to the physical learning environment and how your child is taught or expected to learn can help. Your child may be legally entitled to such changes if they are deemed to have a disability. Public elementary and secondary schools (and charter schools) are required to provide a free, appropriate public education (FAPE) to qualified students with disabilities.

Does my child with lupus have a disability?

Two important laws govern disabilities in education, and each defines “disability” differently:

Section 504 of the Rehabilitation Act of 1973 (section 504) defines a qualified student as one who has a physical or mental impairment that substantially limits one or more major life activities. Major life activities include learning, concentrating, thinking, and communicating.

• The disability must interfere with the child’s ability to learn in a general education classroom.
• If a child is determined to have a disability under this law, they are entitled to what is called a 504 plan.

The Individuals with Disabilities Education Act (IDEA) uses a categorical approach. It defines a qualified student as one whose school performance is negatively impacted by a disability fits in one of the 13 possible disability categories. A school-based evaluation will help the educational team see if the student qualifies for special education services. Special education services for those who qualify may include academic support, speech therapy, occupational therapy, physical therapy, and counseling. The evaluation results will help determine what type of service(s) the student will need to function well at school.

• The disability must affect the child’s educational performance and/or ability to learn and benefit from a general education curriculum.
• If a child is determined to have a disability under this law, they are entitled to what is called an Individual Education Plan, or IEP.

Impairments that are episodic or in remission may be considered a disability under either law if they substantially affect the child’s ability to learn when the impairment is active. It’s important to understand that there is no impairment or medical diagnosis that automatically means a student is deemed to have a disability.

Experts strongly recommend that qualified elementary and secondary students with lupus have formal plans in place with their schools that describe the specific assistance or adjustments they’ll receive — even if their disease is mild or in remission. Having a formal plan in place, like a 504 plan or Individual Education Program (IEP), will ensure that the school is aware of your child’s medical diagnosis and challenges and is providing the assistance they need to be successful.

What is a 504 plan?

A 504 plan describes how a child who has a disability can learn grade-level curriculum like other students with some minor adjustments or accomodation to how they learn material. These adjustments or accommodations that make it easier for a child with lupus to learn and succeed at school. These changes are appropriate for students who need help to access the learning environment but who don’t require special education services. There is no charge for services provided under a 504 plan.

What is an IEP?

Children who require special education services need a different kind of plan called an Individualized Education Plan (IEP). An IEP lays out the program of special education services, supports, and services for a student with a disability under IDEA. It must contain annual goals that the child can reasonably accomplish, broken down into short-term objectives or benchmarks. These goals may relate to physical needs or address other educational needs. There is no charge for services provided under an IEP. Each state decides what IEPs look like, so there are many different IEP forms used across the United States.

What types of adjustments or assistance may help a child who has lupus at school?

The specific assistance that a child who has lupus may receive depends on their individual needs.

Because lupus can cause a lot of different challenges at school, many types of assistance or adjustments may be needed, including changes to:

• How teachers present information in the classroom
• How students complete assignments and tests
• How, when, and where instruction is scheduled
• Requirements for learning and mastering a subject
• Physical surroundings and learning environment

Some possible adaptations that may be appropriate for a child with lupus include:

• Permission to make up missed work and tests without penalty (when medically necessary)
• Permission to leave class to go to the school nurse when needed
• Extra time to complete assignments, projects, and tests 
• Covers or screens on indoor UV lights   
• Use of an elevator at school
• Breaks and rest periods during the day 
• Permission to have hand sanitizer on the desk to reduce potential infections
• Modified physical education

Students with lupus may also need:

• Regular access to a social worker or school counselor
• Two sets of books for school and home use
• Transportation to and from school
• Modified writing assignments 
• Use of a computer to complete assignments
• Permission to leave class to go to the bathroom 
• Extra time to get to the next class or activity
• Schedule changes to avoid physically demanding activities in the morning   

What is the process for getting a 504 plan or IEP for a child with lupus?

Each school district has its own process for developing a 504 plan or an IEP for a child with lupus. Here are the general steps:

1. Document your child’s needs. Ask your child’s doctor to write a letter that describes your child’s medical diagnosis and health needs. The letter should also outline specific recommendations or requests for support that may help your child at school.
2. Contact the school. You will need to inform the school about your child’s medical diagnosis and needs, and request that the school evaluate your child for an IEP or 504 plan. It is best to put that information in writing, even if you are communicating with the school by phone or email. Be sure to sign and date the written request since the school is required to respond to your request within 15 days. 
3. Give consent for the school to evaluate your child. The school system will inform you in writing of their decision to evaluate your child. Before the school can evaluate your child, you (the child’s parent or guardian) must give the school written permission.
4. Evaluate the student. Schools must carefully evaluate the student’s skills and special needs according to federal requirements and standards. The school must use tests and evaluation materials that assess specific areas of the student’s needs. Only trained professionals may administer these tests or materials. The evaluation and placement team must consider a variety of documented information for each student, including results of aptitude and achievement tests, teacher recommendations, reports on the student’s physical condition, and adaptive behavior.
5. Meet with your child's school about the evaluation. You will meet with the school to review the evaluation and find out if your child qualifies for a plan. If you disagree with the school system’s decision, pursue the state’s specific appeal options.
6. Work with the school team to develop the plan. If the school recommends a 504 plan or IEP for your child, you will work with the school team to develop the plan. The plan will document the student's needs, any adjustments and assistance that will be provided to address those needs, how they will be provided, and when the school system will review the plan.
7. Monitor the plan. Follow up on the school’s delivery of the adjustments and assistance included in the plan and your child’s progress.

What do you do next?

You may need to decide whether to place your child in public school or private school based on the types of assistance available at the specific schools in your area. IEPs are offered to eligible students who attend elementary and secondary public schools (including charter schools). IEPs are not offered by private schools. Private schools may provide students who are eligible for specialized services with a different kind of plan called an Individual Services Plan.

Understanding the difference between a 504 plan and an IEP can be difficult, as can navigating the special education laws in your state. A parent of a child with lupus may want to consult an attorney or an educational or disability advocate.

Other resources include:

• Information Resource Center: 1-800-USA-LEARN (1-800-872-5327)
• Office for Civil Rights: 1-800-421-3481 /  TDD: 877-521-2172
• Office of Special Education Programs
• Student Placement in Elementary and Secondary Schools and Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act
• Frequently Asked Questions about Section 504 and the Education of Children with Disabilities
• Special Education and Rehabilitative Services – Other Sites, Association of Service Providers Implementing IDEA Reforms in Education (ASPIRE) and IDEA Local Implementation by Local Administrators (ILIAD)

Other organizations

• Council of Parent Attorneys and Advocates. The council protects and enforces the legal and civil rights of students with disabilities and their families. They enable parents to work more effectively with school personnel to plan and obtain effective educational programs for their children with disabilities.
• National Association of State Directors of Special Education, Inc. The association provides leadership to ensure the provision of a quality education to every child. It focuses on improving educational services and outcomes for children and youth with disabilities throughout the United States.
• National Disability Rights Network. The network provides protection and advocacy for individuals with disabilities. Their members provide legal representation and other advocacy services to all people with disabilities.
• Center for Parent Information & Resources. These centers provide parents with critical information about the relevant processes, their child’s rights, and the parent’s rights under IDEA and section 504. They can answer questions and give practical advice on issues specific to your area.