By Laura Greiss Hess and Kerrie Lemons Chitwood
Estimated Reading Time: 18 min.
Creating an IEP — or individualized education program — can be an incredibly confusing and daunting experience. The “alphabet soup” of acronyms and legalese can increase the anxiety and uneasiness for families.
There are often many professionals in the room, some just popping in and out during the meeting, and families can feel isolated and not fully part of the process. One way to offset these feelings is to prepare ahead of time.
We’ve designed this article to be an at-a-glance format, combining our professional expertise and some handy resources. This information is presented via frequently asked questions and IEP insider tips. In addition, we’ve included insights and perspectives of families from the NFXF community based on their personal, first-hand experiences about the IEP process. We’ve kept the families anonymous and sincerely thank them for their valuable comments and suggestions.
Be sure to check out the many handy resources at the end. It’s our sincere hope that families can find some helpful information to aid them in confidently participating in your child’s IEP as a key member of the team.
Frequently Asked Questions
What is IDEA?
IDEA = Individuals with Disabilities Education Act
IDEA is the federal law that makes early intervention and special education available for students with special needs.
What are FAPE and LRE?
FAPE = Free and Appropriate Public Education
This is central to the federal law and is a protected right of children eligible for special education. Just like all other children, students with special needs have the right to a free public education.
LRE = Least Restrictive Environment
This means that schools must consider teaching a child with special needs in general education whenever possible. There is a continuum of “restrictiveness” ranging from the most restrictive of residential placements, to special education centers where all children on the campus have special needs, to special education classrooms on general education campuses, to resource-style classes where students spend parts of a day in special education and parts of the day in general education plus full inclusion in general education settings. The graphic is a representation of “restrictiveness.”
What is an IEP?
IEP = Individualized Education Program
An IEP is a written document for each child with a disability. It is developed, reviewed, and revised according to the requirements of IDEA.
IEPs are typically held once per year, but the timing may vary depending on the needs of your child. (Tip: You can call an IEP meeting any time.)
IEPs typically have a flow of how things will proceed. Each team is different, but generally the team should collaboratively brainstorm the following:
- Identify present levels of performance.
- Develop goals and objectives.
- Discuss and document necessary therapy supports.
What is a SLP? Is it the same as a ST? What is an LSH Specialist? And what else do I need to know about speech and language?
SLP = Speech-Language Pathology (or Pathologist)
ST = Speech Therapy (or Therapist)
LSH = Language, Speech, Hearing Specialty
Often in schools, SLP, ST, and LSH are used interchangeably — though LSH is typically only used in school settings.
Communication is an “umbrella” that includes many concepts. Here is a breakdown that we find helpful:
What is Speech?
Speech is production of phonemes (sounds), voice, and fluency. In other words, articulation.
What is Language?
Language is the area of functioning most crucial for cognitive and social development. Language includes both verbal and visual input and is comprised of:
- Receptive Language: The understanding — or what the individual receives via communication in the environment.
- Expressive Language: Ability to communicate or express wants and needs.
What are Pragmatics?
Pragmatics is the use of language, sometimes referred to as “social language” (e.g., taking turns, waiting, sharing, eye contact, facial expressions). Pragmatics also includes flexibility of thought and language use depending upon the situation.
What do Speech-Therapy Services in Schools Mostly Focus On?
- Design of a language-rich environment.
- Encouraging language through various modalities on an everyday basis.
Language, speech, hearing (LSH) therapists are support staff who can assist in the development of communication tools, which should be used on a consistent basis and embedded into the IEP.
What is OT?
OT = Occupational Therapy
- Definition: The word “occupation” comes from how we “occupy” our time. Our daily life’s roles and activities, including self-care, play, work, social engagement, leisure, and learning, are all daily occupations, thus occupational therapy teaches daily life skills.
- OT Services: Students participate in occupational therapy to meet annual goals as outlined in the IEP. In school settings, OTs support student learning, access to and overall participation in educational settings, and routines, including academic and non-academic domains. Sensory processing differences are the most common reason for needing occupational therapy.
What is SI?
SI = Sensory Integration
- Definition: The organization of sensation for use.*
- Impact: Sensory integration issues, also known as sensory processing differences, impact:
- Attention and focus.
- Language processing.
- Overall functioning.
- Research: Sensory integration issues have been well-documented in many individuals with FXS.
What is AT?
AT = Assistive Technology
- Definition: Any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized that is used to increase, maintain, or improve functional capabilities of children with disabilities. (Source: IDEA)
- Requirement: Assistive technology must be considered on every IEP.
What is AAC?
AAC = Augmentative and Alternate Communication
- Augmentative and alternate communication (AAC) is the part of assistive technology (AT) that focuses on communication.
- AAC is not just a “device that talks,” it includes a broad spectrum of applications including symbols, gestures, pictures, and icons to enhance communication.
- Use of AAC applications will not stop someone from talking.
Before the IEP Meeting
What to ask for in advance of the IEP meeting:
- An IEP agenda.
- A draft copy of the IEP, including present levels and proposed goals.
- Assessment reports.
NOTE Requests for present levels, goals, and assessments prior to the meeting may need to be in writing. This can often be done via email or by dropping off a note at the school. Be sure to find out how much advance notice is required in order to have your requests honored and to allow the school team to adequately prepare your drafts. This can vary by district (e.g., 3 days, 1 week).
Prepare your own thoughts about your child’s present levels. Have strengths and areas of concern in mind. Consider bringing this information in a handy note format that is comfortable for you to share with the team. (See Positive Student Profile below)
During the IEP Meeting
You are the best source of information on your child, and their best advocate. Go in as a collaborator not as an adversary. Begin with your child as an individual who has strengths and gifts, and from there:
- Ask to have the IEP notes read aloud at the end of the meeting with all team members present. This helps to make sure the team is in agreement about what was discussed and will help to clarify any issues.
- Pointedly discuss collaboration during the IEP meeting.
- Put it on the IEP as part of the service delivery. For example:
- Schedule team meetings monthly or quarterly.
- Define expectations for team communication (e.g., logs in notebooks or email).
- Many therapists and teachers have good intentions, but unless we have formal collaboration spaces, time, and places, it may not actually happen in the way we all want it to happen.
- You do not need to sign the IEP right away at the end of the meeting. You can take it home, review it, share with partner/family and sign later.
Many families make this their regular practice, not just when things are contentious.**
Positive Student Profile Examples
Tips from Parents: Meetings
- My input as a parent is really important in the IEP. So, I always write a detailed page for the “Parent Concerns” section. All year long I add bullet points to a document I keep on my computer. When something comes to mind — a particular challenge, a great success, a dream for him — I type a bullet point. Then when it’s time to write my part of the IEP, I have my bullets to refer to. I try to do my piece well in advance of the meeting in hopes that his teacher might use some of my thoughts to form the goals.
- I always tried to act as another part of the whole team. I did things, I volunteered to provide things, and expected others to do the same. I never went in just pounding my fist and requesting unrealistic things. It has to be cohesive!
- It never hurts to ask for something, the worst they can say is no.
- Trust your gut.
- Educate the IEP team on FXS and what you as the parent know about FXS learning styles each year.
Questions to ask about goals:
- What the goal will “look” like during the school day? (Provides context)
- How will skills be generalized?
- How and when will progress be updated?
- How will parent-school communication work?
- How will the goal will be measured?
- How will data be collected and shared?
Goals should be:
- Interdisciplinary — not just a “speech goal” or “OT goal.”
- Functional, measurable, and data driven.
- Clear and easily understood by anyone.
- Highly individualized to your child.
Tips from Parents: Food and IEPs are a great pairing!
- For every meeting (monthly or IEP) we bring food. Muffins, scones, cut up fruit-yogurt and paper bowls since we usually meet in the early morning. We know their dietary needs as well and provide something healthy. It lets them know that we care about them and appreciate their help.
- I believe it’s a nice gesture AND it’s harder to say no with a bagel in your mouth. Pete suggests bringing enough so there is extra. Then when it’s in the teachers’ lounge and someone says, “Where’s this from?” the answer shows you’re generous parents as opposed to the talk in the teachers’ lounge being about your list of demands.
- We bring food in as well. I always come in a few minutes early and stop in the front office and make sure the secretary and principal have some as well as anyone else on the team who may not be at the meeting (like the paraprofessionals!). These small gestures have always helped not just with IEPs but also throughout the year because they all KNOW me so when we have had to be firm about a decision, they understand a little better. They are also more likely to go out of their way for us. 🙂
After the IEP
- Collaborate and follow through!
- Actively engage in the agreed upon team communication strategies — you are a key team member!
- Don’t hesitate to ask follow up questions. Remember, you can call an IEP meeting at any time, so if you want to meet again with the team, that is your prerogative.
Assistive Technology and the IEP (PDF)
From the National Fragile X Foundation (that’s us!)
From understood.org, previously known as the National Center for Learning Disabilities, or NCLD
IDEA Fact Sheet (PDF)
The term SMART IEPs describes IEPs that are specific, measurable, use action words, are realistic and relevant, and time-limited.
Special Education: Federal laws vs. state laws
Find Your Parent Center
There are nearly 100 Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) in the U.S. and territories.
10 Things to Know Before Your Next IEP Meeting (YouTube)
American Speech-Language-Hearing Association (ASHA)
American Occupational Therapy Association (AOTA)
*This definition was conceptualized by Jean Ayres (1979) an occupational therapist and scholar who pioneered what we understand sensory integration to be today.
**According to WrightsLaw, IDEA does not require parents to “sign” an IEP. Threatening to not sign an IEP does not really mean much. Also, if you do not sign the IEP, others may think you agree to it. You have an absolute right to disagree with the IEP. Do not sit on that right. If you disagree with the IEP, go ahead and sign it, but put a note below or to the side of your name saying that your signature does not mean that you agree with the IEP.