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Making the education system work for your child

Get practical insight and suggestions for getting the best education for your child living with mental illness.

By Darcy Gruttadaro, J.D. Adapted from Making the System Work for Your Child with ADHD by Peter S. Jensen, MD, Ruane Professor of Child Psychiatry and Director, Center for the Advancement of Children's Mental Health, Columbia University

This article provides information from Dr. Jensen’s book, Making the System Work for Your Child with ADHD, (Guilford 2004) focusing on a chapter that describes how to get the best from a child’s education. Although the book’s emphasis is on ADHD, many of its recommendations and resources also apply to children and adolescents living with other mental illnesses.

Children’s experiences in school can make all the difference in the development of their healthy self-esteem and academic achievement. It is essential that parents understand how to be the best advocate for their child and how to get the most appropriate services from the Young girl in library school. Trying to get what your child needs from the schools can often seem overwhelming and difficult.

Parents must be well informed about their rights. There are two federal laws that can help families secure appropriate educational services for their child. The first is known as Section 504 and was passed in 1973 as part of the Civil Rights Act. The second is the Individuals with Disabilities Education Act (IDEA).

Section 504 is designed to ensure that individuals are not discriminated against on the basis of a number of factors, including a disability. ADHD and other early onset mental illnesses qualify as disabilities under section 504. Students with these illnesses may be entitled to receive a 504 plan that identifies appropriate accommodations or interventions for students with disabilities to help them achieve success in school.

A student is entitled to a 504 plan if he or she can show that the disability is continuous, documented and significantly limits at least one major life activity, which includes learning in school.

Making the System Work provides an extremely helpful sample 504 accommodation plan that identifies typical areas of concern for students with ADHD and lists accommodations for these students. The list includes accommodations related to the physical arrangement of the room; lesson presentation; assignments and work sheets; test-taking conditions; organization of material; mood-related issues; academic skills; parental involvement; and more.

The following is a list of typical accommodations that a student with ADHD may have included in a 504 plan (recognizing that the plan must be individually designed to meet the unique needs of the student):

Modified homework assignments and testing;
Supervision of homework assignments;
Reduction in the amount of written work and/or modified deadlines to complete assignments;
Access to a computer for written work, if easier than hand written work;
Alternate seating arrangements in the classroom;
Use of helpful tools (calculator, tape recorder, electric spell checker);
Continual progress reports assessing behavior and/or assignments; and
A behavioral intervention plan or social skills training.

The accommodations provided in a 504 plan may not be enough for a child with ADHD to succeed in school. Parents may wish to consider seeking services for their child under IDEA. Special education services under IDEA go well beyond those typically provided in a 504 plan. These services involve the development of an individualized education program (IEP), which is a detailed plan outlining how the student’s academic and social needs will be met to ensure that the student receives an appropriate education. The IEP is developed by a team that includes the parent, teachers, administrators, and related service providers. Students receiving special education services must be placed in a general education setting whenever possible, because the IDEA law requires that services be delivered in the least restrictive environment.

The following is a list of IDEA services that may be provided in the general education setting for a student with ADHD. Many of these services may also be appropriate for students with co-occurring disorders or other mental illnesses:

Supplementary aids and services (varied instructional practices, behavior intervention plans, instructional adaptations to change the way that information is presented, curriculum accommodations, and more);
School-based counseling;
Speech and language services;
Resource room services (small group work, typically in reading and math);
Test modifications (small group testing in a separate location, extended time for testing and more);
One-on-one service providers (crisis management services, transportation services and more);
Special education teacher support services (may include special education services by a special education teacher in the general education setting or the special education teacher providing guidance to the general education teacher);
Collaborative team teaching (an integrated approach involving a special education teacher and general education teacher providing fulltime instruction to a class of students that includes students with ADHD and other disabilities); and
IDEA services provided in a special education setting (for cases in which the services available in a general education classroom are not enough for a student, and the student requires a specialized classroom or program that may include a lower student-to-teacher ratio and more attention being paid to the social, functional, and academic needs of students with ADHD and other disorders).

The book includes excellent suggestions for parents who think that their child might need special education services. It outlines recommendations for developing an effective action plan as a first step toward securing appropriate educational services for a child with ADHD. The book includes a chart to help parents develop an effective educational action plan for the short, intermediate, and long-term, designed to set forth steps to be taken to address the child’s social-emotional needs, medical needs, educational needs, and parent-family needs.

The book also includes excellent suggestions about how to participate effectively in the all-important evaluations, which includes psychological, psychiatric/neurological, educational, and other evaluations. Parents have the right to copies of all results of tests and evaluations done for the child and should ask for them. Parents should read all of the evaluations that are done for their child and ask about any aspects of the evaluations that they do not understand or do not agree with.

In developing an effective IEP and assessing whether it will serve a child’s needs, parents should consider the following suggestions:

Don’t settle for less when more is needed. Schools may tell families that they do not have the funding or resources to cover the services needed by their child. However, federal law may require that the school provide those services despite what the school is telling the family. Families are reminded that by insisting that their child receives these services, superintendents of schools will better understand the service needs for their school district and can request additional funding to adequately meet the needs of all students.
Do not feel the need to say yes to whatever is offered. This is where it is important for parents to understand their rights and how the IDEA and 504 laws work. Families should not be afraid to leave the IEP meeting without signing the IEP and go home to consider the content before agreeing to the final IEP.
Tips from Parents. Consider taking another parent or friend along with you to the IEP meeting, and choose someone who will help you stand up for the special education services that your child needs. Remember to file and organize all documents related to your child’s educational services and to document all concerns and related issues pertaining to your child’s special education services.

Here are some excellent suggestions for action to take when things go wrong with an IEP or educational services:

Speak openly and honestly with the principal about what is happening, and ask for help in resolving the issues. Asking for help often works well, rather than demanding services from the school district.
Get a second opinion to support your request for changes to an IEP or services. This should include a backup letter or phone call from the child’s treating provider.
Consider talking with school board members whom you might know if there are ongoing concerns.
There is strength in numbers, and you can learn from those who have gone before you. Talk with other parents and with advocacy groups like NAMI to connect with parents who have been through similar experiences and can provide suggestions and guidance.
Consider working with other parents and families to present common concerns to the principal.
Consider going to the superintendent to request alternative services or arrangements.
As a last resort, consider sending a letter from your lawyer to the school district asking that your concerns be met.
Some families have also decided that the battle is not worth it and have moved their child to a different school, although this alternative has some obvious drawbacks.

Making the System Work includes several excellent role-playing exercises, and tips for parents designed to guide them through asking questions and responding to a school’s refusal to provide a child with ADHD with appropriate services. There is also a helpful section on how to make your child’s teacher work for you.

The chapter on schools is just one chapter in a book designed to help parents navigate an often complex treatment and service system. The appendices are rich with practical and helpful resources, including the following:

A: Sample Section 504/ADA Accommodation Plan
B: Parent/Advocacy Organizations and Resources You Need to Know About
C: Funding and Insurance-Related Resources You Need to Know About
D: Legal/Advocacy Resources You Need to Know About
E: Useful Books and Resources
F: Blank Action Plans
G: Table of Psychiatric Disorders, Symptoms, and Proven Treatments
H: Sample Letters
I: Using Behavioral Strategies to Help Your Child Improve His or Her Behavior
J: Ways to Become Involved

Dr. Jensen has done a masterful job of helping families understand how to cut through red tape to get what they need from doctors, teachers, schools, and healthcare plans. Although the book focuses on ADHD, families with a child or adolescent with other mental illnesses will likely find great value in its material.

Purchase Making the System Work for Your Child with ADHD by Peter Jensen now through this link to Amazon.com and NAMI will receive a portion of the sale.

Darcy Gruttadaro is director of NAMI's Child and Adolescent Action Center. This article originally appeared in NAMI Beginnings, Winter 2006. For a free subscription to NAMI Beginnings, please visit the NAMI Store.

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