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[N]o child can be excluded from receiving specialized education services--including children who have hydrocephalus.

The insight you can provide to the evaluators is invaluable to the data they collect by observing your child in the classroom setting.

When with the IEP development team, bring your journal with you to help in the evaluation....

Only when you are...positive that the IEP contains everything you want...should you sign it.

Learning Disabilities: Part II

The following excerpt is taken from Chapter 9 of Hydrocephalus: A Guide for Patients, Families, and Friends by Chuck Toporek & Kellie Robinson, copyright 1999 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Individuals with Disabilities Education Act

In 1973, approximately 750,000 American children were not attending school. Many of these children were disabled.

The Individuals with Disabilities Education Act (IDEA) first saw light as the Education for All Handicapped Children Act (or EHA, known as public law 94-142) in 1975. The EHA was amended in 1990 and was renamed IDEA. Additional amendments were made to IDEA in 1997; these are commonly referred to as IDEA '97.

IDEA guarantees that no child can be excluded from receiving specialized education services--including children who have hydrocephalus. IDEA is the only federal law that mandates education. Although most states have laws that regulate education, this is a federal law that has been upheld by the Supreme Court.

The purposes of the IDEA '97 are to clarify and strengthen IDEA by providing parents and educators with the tools to:

  • Preserve the right of children with disabilities to a free, appropriate, public education.
  • Promote improved educational results for children with disabilities through early intervention, preschool, and educational experiences that prepare them for later educational challenges and employment.
  • Expand and promote opportunities for parents, special education, related services, regular education and early intervention service providers, and other personnel to work in new partnerships at both the state and local levels.
  • Create incentives to enhance the capacity of schools and other community-based entities to work effectively with children with disabilities and their families, through targeted funding for personnel training, research, media technology, and the dissemination of technical assistance and best practices.

In the 23 years since EHA first became law, states have made excellent progress in identifying children with disabilities and providing them with access to special education. There are now approximately 5.5 million children with disabilities--10 percent of all American children aged 3 through 17--who are receiving specialized education under IDEA.

The term "special education" used to mean being segregated into a separate setting with limited educational demands. Now special education indicates that a properly trained teacher works with therapists, family, or administrative staff to develop an individual education plan, or IEP. It is at this point that parents and schools sometimes clash. Some parents opt instead for home schooling.

For all children, the quality of early education defines much about the quality of their future lives. For children with disabilities, their best chance for independence is equal access to education at all levels. Education remains one of the key issues for the disability community--and for the parents who are vocal and passionate advocates for their children.

Before we go any further into the details of IEPs as specified under IDEA, it is important to be familiar with the terminology used in the law and by educators:

  • Individualized education plan (IEP). An IEP is a specialized education program designed to meet the needs of your child. An IEP should address academic development, social skills development, and any emotional needs. An IEP can also address any physical needs, such as needs for physical and/or occupational therapy to help your child function in a classroom environment. An IEP establishes short- and long-term goals. The school makes a placement recommendation, which could include a separate program or integration into a "normal" classroom.
  • Free appropriate public education (FAPE). Parents of children with disabilities should not have to pay for any specialized education or therapy that the child receives through the school system. All schools in the U.S. receive tax dollars under IDEA to pay for specialized education. If your child's school district determines that your child needs to be educated at a private facility, the district pays for this, not you.
  • Least restrictive environment (LRE). Children with disabilities must be educated with children who are not disabled, in an environment that accommodates the disability. Special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability is such that education in regular classes with the use of special education and related services or supplementary aids and services cannot be achieved satisfactorily.

    Placement options available for the child should include instruction in regular classes, special classes, special schools, home instruction, and instruction in hospitals and institutions. When a disabled child is placed in a regular classroom, supplementary aids and services must also be provided. A least restrictive environment cannot place undue stress on the child. For example, your child needs schooling within a relatively close proximity to your home. Asking you to drive your child to another school district that is far from your home is certainly against the definition of a least restrictive environment.

  • Local education agency (LEA). The LEA is the organization that oversees all school and classroom operations in your area or your local school district. One or more representatives from the LEA will be part of your child's IEP development team.

    In implementing its standards, IDEA requires that LEAs make an ongoing good-faith effort to recruit and hire appropriately and adequately trained individuals to provide specialized education to children with disabilities.

    The LEA must also employ these individuals in areas where they are needed. In other words, an LEA can hire what they consider an adequate number of special education teachers, but they must ensure they are assigned to the schools that need them. For example, it won't do you or your child any good if the nearest special education teacher is located 50 miles away. Asking you to take your child that far away to receive specialized education is a violation of the LRE clause (above); the LEA would be required by law to relocate a special education teacher closer to where your child attends school.

  • State education agency (SEA). The SEA is responsible for overseeing all of the school districts in your state. Their job is to disseminates federal and state funds to the various school districts, as well as to oversee and approve school curricula.
  • Comprehensive system of personnel development (CSPD). Under Section 612 of IDEA, the law requires that states establish a CSPD to ensure that an adequate supply of qualified teachers are hired to provide specialized education to children with disabilities. The CSPD is required by law to establish a set of procedures, whereby it acquires and disseminate knowledge obtained through educational research, and adopts promising practices, materials, and technology for educators within the state.

Developing your child's IEP

Developing an IEP that fits your child's needs can be a fairly long process. As easy as it is to get frustrated with the process, always keep in the back of your mind that the long-term goal of the IEP is to allow your child to lead a more productive life. Patience is necessary as you enter the IEP process. In this section, we examine some of the basic steps to setting up an IEP for your child, and provide you with some tips for things to do before, during, and after the IEP is developed.

Essentially, there are four steps in the IEP process. These are:

  • Referral, either by the parents or school officials, to recommend specialized education for your child.
  • Consent, granted by the parents, to enter into the IEP process.
  • Assessment of your child by trained professionals and yourself to determine your child's needs.
  • Development and implementation of the IEP.


Your child needs a referral to have an individualized education program. This can come from either parent, your child's teacher, or a school counselor. The referral starts the ball rolling in helping to determine the educational needs of your child.


If the referral for specialized education comes from someone other than the child's parents, the parents must be informed as soon as the referral is made to the principal of the school. The parents can refuse the referral. However, your refusal can be challenged by the court on behalf of the child's best interest.


Once consent has been granted by the child's parents, the next step in the process is to assess the child in his least restrictive environment. The LRE assessment can be a combination of observing your child at home as well as at school.

During the assessment phase, educators will examine your child's reading, writing, math, and social skills through a combination of interdisciplinary or transdisciplinary exams. As part of the assessment, your child should be tested and observed in his regular school setting, rather than somewhere else. Some tips for parents regarding the testing of your child include:

  • If assessment tests are mentioned in the IEP, ask the team members for details about the specific tests: what they are, how they will be used to track your child's progress, and how the results will be used to help your child.
  • Take test results with a grain of salt. The scores for your child are traditionally compared against those for a broader base of children in his age group who don't have a disability or learning disorder.
  • Know what the tests are for, and agree to them only if they are going to yield a direct result for your child. Again, make sure that you know how the test results will be used to help gear specific learning needs for your child. If the teachers want to conduct a certain test but can give you no substantial reason why, then refuse the test.

The people conducting the assessment (i.e., speech therapist, occupational therapist, neuropsychologist, etc.) need to be brought into the classroom to observe your child over a period of time to determine what he needs help with. For instance, an occupational therapist may be brought in to observe the way your child is holding a pencil or crayon to determine the type of therapy to offer.

The evaluators must also involve the parents as part of their assessment. As a parent, you have more information about your child to offer the evaluators. You see your child every day, and you know what he has a difficult time with and how he struggles to keep up with his classmates. The insight you can provide to the evaluators is invaluable to the data they collect by observing your child in the classroom setting. The evaluators should look to you for any missing links to help them determine the education needs for your child.

Yesterday I went to review Mike's progress with his teachers and counselor. After two years of negativity on the part of the school, I was shocked to hear them suggest Mike not be afforded the "resource room" for math anymore--only for English. I voiced my concern that he will fall behind and that it was too early to suggest this. His regular classroom teacher backed me up in saying we have a good thing going here and if we took this action he might not stay on top of things. In the end, we decided the individual attention and quiet atmosphere of the resource room should be kept in Mike's routine at this time.

Next was the occupational therapy--his handwriting is average (according to the teacher), and they tried to take this therapy away too. I said, "No! Mike goes to occupational therapy twice each week and this will continue." However, I did agree that another child also receiving occupational therapy could join the session if Mike agreed to it.

Development and implementation of the IEP

Once all the assessment of your child has taken place, the next step involves the development and implementation of your child's personal IEP. The IEP needs to be specifically designed to meet the educational and developmental goals for your child, not adapted from one previously developed for another child.
We have been fortunate in all of our dealings with his school system. They have been very detailed and accommodating in his IEP and have made sure that both he and I are comfortable in his placement. They have made a personal aide available to Shaun to be with him every day in school to watch over him so that his teacher can focus on the other kids too. I am so comfortable dropping him off in the morning with the same person everyday who will watch him and be my eyes and ears while he is at school.

To develop an IEP for your child that will meet your goals and his needs, start by keeping a journal. Make a list of everything you want your child to learn and be able to do. Also make note of the things he can do. Take notes about the things your child has a difficult time with; note what he was attempting to do and how it affected him, as well as anything you or your spouse (or siblings) did to help him along. When you go in to meet with the IEP development team, bring your journal with you to help in the evaluation process.

The people who attend the IEP planning meeting should be looked upon as a team consisting of:

  • You, the child's parents.
  • Your child's teacher (or teachers, if your child has more than one teacher during the day).
  • At least one special education teacher, preferably the special education teacher who will work with your child.
  • Representatives from the LEA qualified to provide or supervise special education programs that meet the needs of children with disabilities. This person, or persons, should also be familiar with other local agencies in the area that can assist in meeting your child's needs.
  • Someone who can interpret the results of the evaluation to help determine the needs of your child. This person may already be a member of the team, for example, a special education teacher or a representative from the LEA.
  • Any other person you feel is qualified. For instance, this person could be someone who works with a local United Way chapter in providing care and services for children with disabilities. Such a person could also assist the school in obtaining any special equipment your child may require.
  • And last, but certainly not least: your child. As the IEP will be specially designed to fit the needs of your child, he should be included as part of the team. Having your child there also helps other team members remember who they are developing the IEP for. If your child has any input about how a certain task is going, he can provide valuable information, firsthand, to the other members of the IEP team.

Throughout the development and implementation phase, parents should:

  • Keep track of phone conversations and make notes about things said. Note the time of the call, who you spoke with, and what you talked about, especially if any derogatory comments are made.
  • Not feel rushed. The IEP meeting should be more than just one simple meeting. Your child's education will span many years, so it's important that you don't feel pushed into signing the IEP if it doesn't meet your child's long-term needs and goals.
  • Understand all terminology in the IEP. If you don't understand something that has been said or written, ask for a clarification.
  • Ask questions about the plan and what the school administrators are talking about.
  • Bring along an ally or a friend. This person can be there to take notes throughout the meetings and help you interpret things being said.
  • If you are still unsure about something and want more clarification, contact the state attorney general and request a copy of the state's regulations on special education.

In order for any team to accomplish its goals, everyone on the team must view the others as equal and valuable members of that team. Keep in mind that everyone is working to help your child. Insist on a plan that will help your child succeed, but do so in a manner that is nonconfrontational. If everyone works together in a calm, professional manner, your child will be the winner.

What the IEP includes

Your child's IEP should be a detailed outline that states the results from the assessment tests, what your child is capable of right now, and what the intended goal is. The IEP should:
  • Describe your child's present level of ability. For instance, what is your child capable of doing right now? Can he graph large to small, count from one to ten, and/or draw or determine shapes?
  • Note whether certain tasks can be done at home and not at school, or vice versa. If your child is capable of doing something in one place but not the other, this could indicate some type of barrier that's preventing your child from performing the task equally in both places.
  • Define what your child needs to learn. What are the skills and goals that your child needs to learn before moving on to the next step? For instance, the IEP should state that your child will need to learn how to read sentences of a certain word length (e.g., sentences that have eight words).
  • State how the teaching and learning will be done. This should include the mechanism for evaluating your child's progress, materials to be used, and requirements for adaptations or modifications to your child's learning environment.

Only when you are absolutely positive that the IEP contains everything you want for your child should you sign it. Don't feel pressured to sign the IEP if you are unsure about something or if you feel that it is still lacking something your child needs. Your child's IEP is a legally binding document between the school district and you, the parent.

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