(This summary of our 2020 ALD Connect Annual Meeting and Patient Learning Academy session on Education Supports for ALD Boys: IEPs AND 504 Plans by Nicole Metsistso Mazer, Esq. was published on December 2, 2020.)
Individualized Education Plan (IEP) for Children With Adrenoleukodystrophy
When adrenoleukodystrophy (ALD) occurs in children, it is called childhood cerebral ALD or CALD, and it leads to serious neurological disorders. Children with CALD may experience learning and behavioral difficulties, which can make school more challenging for them. An individualized education plan, known as an IEP, may help your child to be more successful at school.
IEPs can provide children with CALD the individualized support they need to learn most effectively. The following may help you to establish such a plan for your child.
What is an IEP?
An IEP is a plan for children with disabilities that allows them to receive specialized instruction, support, and services to help them succeed in school. It is covered under the Individuals with Disabilities Education Act (IDEA). IDEA provides special education services in the public school system for children with specific disabilities. A team of educational professionals will work with you, your child, other family members, and your child’s healthcare team to develop the IEP.
Who is eligible?
To be eligible for an IEP, a child must meet two main criteria. The first is that the child has one of the 13 types of disabilities listed in IDEA. Second, the disability must affect the child’s ability to learn from the general education curriculum that the school offers. Your child’s specific symptoms will determine whether or not he or she falls under one of the types of disabilities.
What is the goal of an IEP?
An IEP has two main purposes: to establish goals for the school year for your child and to state what services and aids the school system will be providing to your child to help him or her meet those goals.
In order to determine these two main pieces of the IEP, special educators will look at your child’s current educational progress, his or her specific disabilities, and what subject matter the general student population would be covering during the course of the year. The educators also may take into account other activities outside of the classroom, which could include involvement in clubs, field trips, and sports.
From this information, the plan and goals can be defined, along with timelines.
Once the goals are set, specific accommodations and services can be determined. These could include additional time on tests, regular meetings with a school counselor to deal with behavioral issues, or assistive devices. Usually periodic meetings are held with parents or guardians and school officials to chart the child’s progress during the school year.
What else should I do?
Learning and social interactions are an important part of childhood. You can listen to your child and gather information about the challenges he or she is facing at school. This can help guide discussions during any IEP meetings with the rest of the IEP team. Having open discussions with school counselors, teachers, and administrators about CALD and the challenges it poses can help them understand how they can best serve your child.
As CALD is a progressive disease, be sure to ask your son or daughter’s physician about any changes in your child’s physical or mental status that could have an impact on school life. Also, make sure to share any new information with the staff at school so they can make any necessary updates to better serve your child.
What if my child doesn’t qualify?
Sometimes parents and school members might disagree over a child’s qualification for an IEP or specific parts of an IEP. In case of a dispute, parents can try a series of escalating options starting with negotiation and mediation, all the way up to lawsuits and civil rights complaints.
If your child does not fit the requirements for an IEP, he or she may instead qualify for a 504 plan under Section 504 of the U.S. Rehabilitation Act of 1973. The 504 plan has a broader definition of disability. It is for students who can still benefit from the general education curriculum but may just need some modification or accommodations to succeed. Such plans also usually allow extended time on tests and assignments, preferential seating in the classroom, behavior management support, and verbal, visual, or technology aids.
Developing a good working relationship with your child’s teachers and school support staff can help you to assist your child in learning most effectively.
Last updated: Dec. 2, 2020