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Pervasive Developmental Disorders

Special Education and IEPs

The following excerpt is taken from Chapter 9 of Pervasive Developmental Disorders: Finding a Diagnosis and Getting Help by Mitzi Waltz, 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.
The special education evaluation forms the basis of a document that will soon become your close companion: your child's Individualized Education Plan (IEP). Like the IFSP used in Early Intervention programs, the IEP describes your child's strengths and weaknesses, sets out goals and objectives, and details how these can be met within the context of the school system. Unlike the IFSP, the IEP is almost entirely about what will happen within school walls. There will be little information about services from outside programs or parents, unless the IEP team agrees to include it.

The IEP is created in a meeting of the IEP team, which has a minimum of three members: a representative of the school district, a teacher, and a parent. The district may send more than one representative. If your child has more than one teacher, or if direct service providers such as her speech therapist would like to attend, they can all be present. If it is your child's first IEP and first assessment, one team member is required by federal law to have experience with and knowledge of the child's suspected or known disabilities. You may want to check this person's credentials in advance. The "autism specialists" employed by some school districts can have as little as one college course on the topic of autism, or even no qualifications other than the title itself.

Both parents are encouraged to participate in the IEP process. Parents can also bring anyone else they would like: grandparents or other relatives, a friend, an after-school caretaker, a disability advocate, or a lawyer, for example. The child himself can also be at the IEP meeting if the parents would like--however, it's a good idea to bring a sitter with a young child to avoid disruptions. You want to be able to give the IEP process your full attention, and that's hard if you're also trying to keep a child out of trouble.

Districts are trying to involve middle school and high school students in the IEP process more often, and this is probably a good trend. You may want to discuss the meeting with your child and elicit her suggestions in advance. Some adolescents prefer to write up their suggestions rather than (or in addition to) attending the meeting. As with young children, be sure someone is available to take care of your child if she tends to be disruptive, or that you've brought a book or game in case the meeting gets boring. It's not beneficial to force an unwilling child to take part in the meeting.

Usually the IEP meeting is held at a school or a district office. However, you can request another location for the meeting if it is necessary--for example, if your child is on homebound instruction or has severe behavior problems that make caring for him impossible away from the controlled environment of home at this time. The meeting date and time should also be convenient to you (and, of course, to the other team members).

Your first IEP meeting should begin with a presentation of your child's strengths and weaknesses. This may be merely a form listing test scores and milestones, or it can include verbal reports of observations by team members--including you. You can use this time to tell the team a little more about your child, her likes and dislikes, her abilities, and the worries that have brought you all together for this meeting. Even if you're repeating information that the team members already know, this kind of storytelling humanizes your child and yourself. You'll want to keep it brief, though, so you may want to use a short outline and even practice in advance. Five or ten minutes seems about right, although you may find that you need more time. If you can keep your written description to one or two pages, that would be good.

This kind of information may also be entered on an evaluation or record summary form.

The meat of the IEP is the cover sheet, usually called the accommodations page, and the goals and objectives pages. Your district may have its own bureaucratic names for these pages, such as a "G3" or an "eval sheet." If team members start throwing around terms you don't understand, be sure to speak up! If the wrong forms are filled out or if important paperwork is left undone, you may not have an acceptable IEP at the end of the meeting.

Parents tend to focus on the goals and objectives pages, and often overlook the accommodations page. That's a big mistake. The goals and objectives are all about what your child will do, and if they are not accomplished, there's no one who can be truly held accountable but your child. The accommodations page, however, is about what the school district will do: what services it will provide or pay for, what kind of classroom setting your child will be in, and any other special education help that the district promises to provide. This is where really important promises are made.

Click here for a sample accomodations page
(figure 9-4)

Accommodations that your child may need include:

  • Specific type of classroom
  • Other specific types of environments, such as the availability of a "resource room" for certain subjects, mainstreaming for certain subjects, or an area for time-outs or self-calming
  • Changes to the classroom environment to accommodate your child's sensory difficulties
  • Specific learning materials or methods
  • A personal educational assistant, aide, or "shadow"--not a monitoring aide who simply helps with behavior control, but an inclusion or instructional aide
  • Therapeutic services and their frequency
  • Adaptive communications equipment or procedures
  • Other classroom equipment needed to help your child learn, such as a microphone or sound field system to help the child with auditory processing problems, a slanted work surface, or pencils with an orthopedic grip

The accommodations page should not already be filled out when the IEP meeting begins, as the goals and objectives should dictate what accommodations will be needed. Beware: Saying that your child will do something costs the district nothing, but promising that the district will do something has a price tag attached. Be prepared to hear phrases like "I don't want to commit the district to that" over and over--and to methodically show that the accommodations you're asking for are the only way the goals and objectives the team has set can be met. With few exceptions, district representatives see their role in the IEP as being the gatekeeper. This role may be interpreted as spending as little money as possible, or ensuring that children are matched with services that meet their needs, depending on the person, the district, and the situation. Most district representatives struggle to balance these two goals. As your child's advocate, your job is to persuade the representative to tip the scales in your child's favor.

As with the IFSP, you'll be working backward when you fill out the goals and objectives pages. You'll begin with big goals--"Katie will learn how to read," for example--and break them down into developmentally appropriate steps that can be accomplished in the classroom. The classroom teacher(s) and direct service providers should be the experts at this task. Often each of these team members will send or bring a list of goals and objectives already broken down for the whole IEP team to discuss. This saves a lot of time, and allows everyone to concentrate on the pros and cons of their ideas rather than having to actually come up with the ideas themselves at the meeting. You may choose to meet one-on-one with these team members to talk over IEP ideas before the big meeting.

As in an IFSP, there may be goals in the areas of cognition (problem-solving and pre-academic skills, such as knowing the names of colors), fine- and gross-motor development, communication, social skills, and self-help skills. There will also be academic goals. In addition, there are many general goals which may be long-term goals. Goals and objectives will be detailed on a form similar to the one shown in Figure 9-5.

Click here for a sample IEP Goals and Objectives page
(figure 9-5)

Academic goals

Academic goals are often the center of controversy in an IEP meeting. Schools do not want to guarantee that a student will learn certain material; in many cases, they don't even want to promise that they'll try to teach it. And if an autistic spectrum child happens to have certain academic skills that are close to being age-appropriate, appropriate for his age, or even superior, it is very hard to have anything written into the IEP about maintaining or developing these skills further. Special education services are about addressing deficits, say the educators. (One exception to this rule is the state of Massachusetts, which has regulations requiring school districts to "maximize the potential" of disabled students.)

Parents, however, know from experience that whatever gifts or islands of competence their child may have are essential to his well-being and educational success. The child who can read well but does not speak needs to continue to develop that reading skill, as it may be his only mode of communication for now. The child with a special gift for mathematics may be offering the teacher a way to impart other lessons, from the rules of grammar to the rules of playground basketball. Parents and experienced, caring teachers can often show the rest of the team why IEP goals based on strengths can be as important as those based on deficits.

Generally speaking, children in special education programs should be educated to the same standards as all other students whenever that is possible. They should also work with the same curriculum and objectives. For example, if third graders in your district are normally required to present a ten-minute oral report about state history, a child with a severe speech impairment that prevents an oral report from being fully understood should be allowed to present a visual report, to have her written report read out loud by a helper, or to use an augmentative communication device to deliver the report. A child with mild mental retardation might present an oral report with a simpler format or shorter length, according to his abilities.

As a parent, you'll want to talk to your child's teacher about the academic curriculum in use in your child's school and in the district itself. Make sure that your child is being instructed in the skills, concepts, and facts needed to proceed in school.

In some states, children are required to meet certain benchmark standards to move on to the next grade level or to complete high school. High school diplomas are discussed further in the section "Graduation," later in this chapter, but you may be able to include a provision in your child's IEP regarding how any standardized achievement tests of this type will be handled. This may range from exempting the child from the testing requirement to insisting that the school provide extra academic help and/or test-taking accommodations to allow the student her best chance of doing well on the test.

Social opportunities

Another area that is often left out of IEP plans is opportunities for socialization and enrichment (see the section "Social skills training," later in the chapter). Again, you may be told that this is not part of special education. Because the primary deficit in autistic spectrum disorders is precisely in the area of socialization, however, this is emphatically not true where your child is concerned. The best place for children to learn appropriate social skills is in supervised activities with peers, and most schools make a plethora of these available to their students.

At my school now I would like to have play time always. I wish they had a Greek myths club after school. I am going to start going to Cub Scouts soon. --Seven-year-old Ian (diagnosed PDD-NOS, Tourette syndrome, obsessive-compulsive disorder, ADHD)

•  •  •   •  •  

An after-school program has been wonderful for Miles. He loves science, and they really stress sciences in this program. It has helped him with socialization also. --Ann, mother of seven-year-old Miles (diagnosed PDD-NOS and ADHD)

In fact, under the Americans with Disabilities Act (ADA), all children with disabilities have the right to be involved in all school activities and clubs, not just classroom-based educational activities. This includes band, chess club, chorus, sports, camping trips, field trips, and any other activities of interest to your child that are school-sponsored or school-affiliated. If your child will need accommodations or support to take advantage of these activities, the IEP is where these should be listed. If you do not have an IEP, a 504 plan (see later in this chapter) can be used.

Socialization opportunities may also be through nonaffiliated community programs. You can write support for these activities in the IEP as well.

Signing the IEP... or not

When the IEP is complete, the accommodations page will include a list of each promise, information about where and when it will be met, and the name of the person responsible for delivering or ensuring the delivery of the service or accommodation. If the complete IEP is acceptable to everyone present, this is probably also where all team members will sign on the dotted line.

You do not have to sign the IEP if it is not acceptable. This fact can't be emphasized enough! If the meeting has ended and you don't feel comfortable with the IEP as it is, you have the right to take home the current document and think about it (or discuss it with your spouse or an advocate) before you sign. You also have the right to set another IEP meeting, and another, and another, until it is truly complete. Don't hinder the process unnecessarily, of course, but also don't let yourself be steamrolled by the district. The IEP is about your child's needs, not the district's needs.

Needless to say, you should never sign a blank or unfinished IEP: it's a bit like signing a blank check. Certain school districts ask IEP meeting participants to sign an approval sheet before even talking about the IEP. Others are in the habit of taking notes for a prospective IEP and asking parents to sign an approval form at the end of the meeting, even though the goals, objectives, and accommodations have not been entered on an actual IEP form. This is not okay. If they insist that you sign a piece of paper, make sure to add next to your name that you are signing because you were present, but that you have not agreed to a final document.

If your child already has an IEP in place from the previous year, this IEP will stay in place until the new one is finalized and signed. If your child does not, you may need to come to a partial agreement with the district while the IEP is worked out.

If the process has become contentious, be sure to bring an advocate to the next meeting. A good advocate can help smooth out the bumps in the IEP process while preserving your child's access to a free and appropriate education.

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