How to advocate for your child.
After struggling with reading since kindergarten, eight-year-old Jack has finally received a diagnosis of learning disability (LD). Thirteen-year-old Sarah, whose grades have declined steadily since fourth grade, has been diagnosed with Attention Deficit Hyperactivity Disorder (ADHD).
LDs and ADHD are among the most common learning and behavioral disorders identified in children and adolescents in the U.S.
It is often a great relief for parents to receive diagnoses that explain school failure in children with normal learning potential. With a diagnosis, your participation as a team member is essential in assuring that your child has the most appropriate services from the early school years through high school and into college or vocational training.
Learn the Law
Federal legislation guarantees educational services to individuals with disabilities and disorders. The Individuals with Disabilities Education Act (IDEA) of 2004 assures free and appropriate public education (FAPE) in the least restrictive environment (LRE) for individuals 3 to 21 years of age. Becoming aware of this legislation will help you obtain important services for your child.
You can influence schools to provide identified services the law guarantees. Section 504 of the Rehabilitation Act of 1973 is civil rights legislation that protects students with educational needs from discrimination. This law supports the inclusion model of education and makes it possible for many students to stay within the regular education classroom with individual support.
Learn the Language
To be a team member, you need to be familiar with the language used in school settings. After a comprehensive evaluation, school personnel arrange a planning and placement team (PPT) meeting to review the evaluation, determine educational needs and plan services. This meeting includes you, your child of middle or high school age and all school personnel who are involved with your child. Older students often provide valuable insight into their educational needs. Other professionals serve as resources, especially for medication issues or mental health diagnoses.
Educational and behavioral services take many forms. The diagnosis determines the services your child needs. If your child requires extensive assistance outside the regular classroom, an Individualized Education Plan (IEP) is developed and your child is considered a Special Education student. An IEP is a legal document that includes diagnosis, goals, objectives and methods to meet them within a defined time. PPT meetings are conducted annually to review progress and to modify IEPs as needed. Schools must accommodate parents’ written requests for additional PPT meetings. By law, children are required to have an evaluation every three years to determine if diagnoses and plans are still appropriate.
If your child’s needs can be met in the general education program, a 504 Plan may be offered. This document outlines accommodations and/or modifications to be implemented in regular classrooms. The school develops the 504 Plan with input from parents and older students and, perhaps, from mental health or primary care providers. Accommodations — which can be organized into categories such as the ones that follow — are developed with the expectation that your child will reach target goals with appropriate classroom supports.
* Timing (extra time for seat work or tests, additional days to complete long assignments).
* Setting (quiet, small group or separate from group).
* Flexibility in presentation (written instructions if better visual skills, oral instruction if better auditory ability, access to a note taker if difficulty with handwriting and copying).
* Flexibility in response (oral tests instead of written, computer or tablet if printing or writing skills are problematic).
Such accommodations may facilitate learning while allowing children to demonstrate academic mastery. Further suggestions are available at CHADD.org.
Sometimes schools do not offer a 504 Plan for conditions such as ADHD. However, if the professional making the diagnosis determines your child would benefit from a 504 Plan, the school must develop a plan. (This is guaranteed by Section 504 of the Rehabilitation Act.) Appropriate accommodations can facilitate academic progress for your child in the regular classroom.
Modifications differ from accommodations, as modifications may change the target goals by lowering performance expectations. For example, a child with both ADHD and LD may need to complete only half an assignment, with spelling errors overlooked. This child would not be demonstrating the same level of mastery as other students.
Depending on your child’s unique needs, modifications may promote learn- Education Depending on your child’s unique needs, modifications may promote learning while preserving self-esteeming while preserving self-esteem.
It is important that IEPs and 504 Plans be developed before the beginning of each academic year. All services in IEPs and 504 Plans must be provided legally by school personnel. Both plans are developed annually at team meetings, but parents may request reviews at any time.
If you are confused by unfamiliar laws and puzzling language relating to your child’s needs, request clarification. Communication is critical for achieving large goals and for monitoring small steps closely as well. Many schools have websites to view homework assignments, access long-term assignments and check your child’s grades. Teachers often have school email accounts for communicating about progress and concerns.
Other school personnel may have important insight. The nurse may have concerns to share with you. Sometimes school social workers organize “lunchbunches” where children gather to practice social skills. Ask staff if your child might benefit from such programs.
A calm, involved parent who communicates regularly with staff has an easier time sharing concerns. Frequent communication increases the likelihood that IEPs and 504 Plans will be implemented. In addition to meetings for IEP or 504 Planning, periodic parent-teacher conferences are excellent opportunities for face-to-face communication.
Written communication is necessary when requesting additional evaluations, changes to plans or more team meetings. It’s important to maintain a fi le of all communication with school personnel, including evaluations, report cards, IEP or 504 Plans, records of meetings and emails.
In the best of all worlds, children would receive outstanding educational services and make excellent progress academically, socially and emotionally. This does not always happen. If your child is not receiving the interventions determined necessary by the comprehensive evaluation, you should advocate for these services. Knowing federal legislation makes it simpler for you to advocate effectively for the best services.
Primary care or mental health providers can be helpful advocates at IEP and 504 meetings. Also, paid advocates have specific skills in navigating the educational system — including assisting with the development of appropriate IEPs Education and 504 Plans, assuring the best environment and assisting with major transitions. Many states have directories of advocacy services to guide you to trained professionals for assistance with issues of discrimination and inadequate services. Advocacy is especially important when planning your child’s transition to a new school setting. Your child’s strengths, needs and wishes must be considered in conjunction with the available school and community resources.
As parents, you play an important role in ensuring your child’s success in school. You must be familiar with the laws that guarantee services and the language that describes the services. Frequent communication with team members and active advocacy are crucial in securing the best possible program for your child.
Pat Ryan-Krause, MS, RN, MSN, CPNP, is an Associate Professor at Yale University School of Nursing. She also holds a Master’s degree in Special Education from Syracuse University. She performs developmental assessments and participates in the educational planning for many patients in her clinical practice.