When Ashton Scheppers started preschool, his parents knew that he would face learning challenges. Ashton was born with Down syndrome, accompanying medical complications, and was also diagnosed with attention-deficit hyperactivity disorder (ADHD).

The Scheppers went into their first school meeting trusting the teachers and specialists to create and implement the perfect plan to help Ashton thrive. They quickly discovered that ‘trusting the experts” wouldn’t be enough. They needed to become experts themselves. “We realized we really needed to do our homework to assure opportunities for Ashton,” remembers Kristen Scheppers, Ashton’s mom.

One of the first things they learned is that an Individualized Education Program, or IEP, is a legally binding document that allows your child to receive special education services. A child cannot receive any special education services without an IEP and the assessment process to qualify can be lengthy. “You don’t automatically get services just by having a doctor’s note or a diagnosis,” says Abby Dorn speech/language pathologist at South Lakewood Elementary. “There is a six- to eight-week process of assessment, where various adaptations and interventions are attempted before initiating an IEP.” This process is done to avoid “over-identifying,” so even a child with a severe disability must go through the same process.

The resulting IEP report spells out the student’s learning needs, the services the school will provide, and how progress will be measured.

First Steps to Take

The Scheppers were fully aware of Ashton’s disability long before he entered school. However, in many cases, parents may be unaware of the typical developmental milestones. It is often a teacher, doctor, or family member who spots a problem. “We were at a friend’s house who happened to be a nurse,” recalls Eric Epstein, whose 18-year-old daughter Joyanna has autism. “Our friend saw some things that were out of the ordinary, but we didn’t know that because Joyanna was our first kid.”

If you suspect something out of the ordinary, Colorado’s Child Find is a good first step to take. It is a free service of Colorado Department of Education, with the specific purpose of identifying developmental delays and determining if there is a need for early intervention and special education services.

“We received Simon’s initial diagnosis through Child Find,” explains Virginia Warner, referring to her nine-year-old son. “They identified a speech delay which got the ball rolling for his IEP, and then they referred us to DDRC (Developmental Disabilities Resource Center) where we were able to get him started with an occupational therapist, a speech therapist, and a nurse.” Like Joyanna, Simon was later identified as having autism. Thanks to the initial assessment through Child Find, the Warners were already connected to a system of support and had an IEP with full services in place.

Learning the Terminology

“It’s really important to understand the terms and labels when it comes to special education,” says Scheppers. “For example, an accommodation is an extra support to help a child reach a learning goal or standard, where as a modification is an adjustment of the goal or standard. Accommodations help Ashton reach the bar. Modifications lower the bar. You have to be careful what you agree to.”

Here’s the gist: The federal Individuals with Disabilities Education Act (IDEA) guarantees all children access to a Free and Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). This means they must be taught in the same setting as students without documented disabilities as much as possible.

“The goal of an IEP,” explains Dorn, “is to enable all children to access general education. We want to make sure that the services we provide ultimately lead to a child being able to participate and learn with his peers.”

Help Ensure the IEP Works

The school typically prepares an assessment report in advance, which is used as a starting point for setting goals and determining how to support the student in meeting those goals. If you haven’t received the report in advance of your scheduled IEP meeting, don’t hesitate to request it from the school. The reality is that while educators have children’s best interests at heart, they are often overwhelmed with many pressing concerns. Paperwork is easy to push to a back burner.

As you read the report, remember that IEPs should be written based on the needs of the child, not the handicapping label, and should be customized for each individual. “Each child’s abilities and disabilities are woven together and they need customized content and approaches,” says Epstein. “This is the whole purpose of an IEP, but in reality, some contexts will flex and adapt to what works for your child, and others just won’t. You may have to push to find alternatives.”

Part of pushing is asking a lot of questions. Professionals sometimes forget that most parents don’t have a background in special education and its vocabulary. Ask for explanations, and if you still don’t understand, ask again. “You can always just say, ‘I don’t understand that,’ or ‘I’m not prepared to decide that now’,” advises Scheppers. “Don’t just agree or make decisions on the spot to avoid inconveniencing people.”

If you need time to reflect, research, consult doctors or therapists, or talk to your child, take it. Although you may feel the pressure of needing to move the meeting along for the sake of schedules, it’s more important to enable yourself to make calm, well-reasoned decisions. “Many parents don’t know that you can request a break or a follow-up meeting any time,” says Warner. “If you have a question, concern, or want to revisit a goal, you can meet with the whole team or any member of the team.”

Make your requests for meetings or schedule-changes in writing. This establishes a timeline, a paper trail, and allows all your requests to be documented in your own words.

Assembling the Team

Once your child has an IEP in place, a meeting should be scheduled at the beginning of each school year. It will include an administrator, one or more of your child’s teachers, the therapists and specialists that will be part of your child’s team, preferably all parents and/or guardians, and anyone else that the parent would like present (such as a friend, doctor, or advocate). You can expect formal notification in writing of your initial meeting. If a team member can’t make it, you should be notified and given the option to meet without that person, or to reschedule.

While it can be intimidating to sit at a table of experts, remember that you are the expert on your child. You know what does and doesn’t work from years of experience and parental intuition. Be prepared to take an active role. “I found that I needed to educate the team about Sabrina’s condition,” says Joleen Henzie, whose adopted daughter was diagnosed with Fetal Alcohol Syndrome in her early teens. “You can’t expect them to know all the subtleties of every diagnosis. Assume that you know a lot more about the specific variations of your child’s disability and needs than anyone else.”

Before an IEP Meeting

Make sure that you request:

• A draft of the IEP report. If you have questions or don’t agree, ask to meet with the person who administered the assessment prior to the IEP meeting, to clarify your questions and requests.
• Updates on progress toward previous goals.
• A meeting agenda.

Make sure that you read:

• The report. They typically run 15 to 20 pages. “If parents haven’t read the report ahead of time, it’s demotivating to the team who worked so hard to put it together, and we can’t accomplish much,” says Dorn. “To be productive, everyone needs to arrive informed.”
• About your rights and what services are available. See understood.org.

Make sure that you write:

• Questions or requests that you want to discuss. Add it to the agenda and return it to the team prior to the meeting.
• A parent input section for the IEP report. While this is not a part of the standard report, there is an IEP Parent Input Section available at wrightslaw.com. “We want this to be a part of the legal IEP document, so we always include it,” says Scheppers. “We start with a list of positive things about Ashton—his strengths, talents, and interests. Due to the nature of an IEP, the rest of the document focuses on his needs rather than his strengths, but we want his IEP to reflect him as a person as he moves from school to school.”

During the Meeting

• Take a buddy along. It’s easy to feel outnumbered or intimidated, so have a spouse, friend, family member, or advocate at your side.
• Build rapport. Start on a positive note by expressing appreciation for the time, energy, and dedication of your child’s team. People want to help when you appreciate their efforts.
• Set goals before placement and services. Don’t make the mistake of moving from the assessment straight into placement and services. Customized goals need to guide all of those decisions and should be determined first, so that you have a solid idea of which of your child’s needs can be met in a general classroom. Also, make sure the goals are measurable. These will be the indicators of your child’s success or need for further support.
• Lead with questions. Get all the information before agreeing to changes. Ask, “What will that look like?” and “How will this benefit my child?” It can sometimes take a semester or even a whole year to reverse changes, adjust goals. or reinstate services, so make sure you know exactly what’s being decided. The Scheppers favorite lead is “help me understand,” especially when they feel uncomfortable with what’s being proposed. It allows the conversation to stay solution-focused.
• Request assessments, not services. For example, instead of requesting speech therapy for your child, request a speech assessment. Only a licensed professional is qualified to determine if a child needs or does not need a particular service. List the reasons why you think an assessment is educationally necessary and submit your request as part of the IEP agenda or in the parent input section.

After the Meeting

• Send a thank-you email. Gratitude goes a long way. This is also a chance to document what was discussed, and offer gentle reminders for follow up (i.e. requesting an assistive technology consultation, sending a release form home with your child so that they can communicate with private therapists, etc.)
• Remember what you can expect, and not expect. “There are limits to what schools can offer,” says Dorn. “Sometimes parents want to spend a lot of time talking about things that are happening outside of school, and the team members all empathize, but the IEP meetings can really only address a child’s learning needs and goals and what is happening at school.” While you can’t expect an IEP meeting/team to address all of your child’s challenges, educators are often happy to recommend outside resources, and connect you with other families who could offer support.

When Things Get Sticky

Be prepared, the IEP process is challenging. “We never want an adversarial relationship with our child’s team,” says Scheppers, “Of course we don’t. Everyone cares about Ashton and wants the best for him, but schools have a yearlong focus, whereas parents have a lifelong perspective. Sometimes our goals and opinions clash.”

Warner recounts a time when an unqualified intern who hadn’t read Simon’s report and didn’t even know his name was appointed to run his IEP meeting. “That was hard. And this year they’ve terminated his IEP because he has progressed beyond his need for services. We agreed, but I’m apprehensive.”

“Terminating an IEP can be cause for celebration,” says Dorn, “but it’s always scary to let go of those supports and services and it’s sometimes very difficult to reach agreements.”

If you disagree with the assessment provided by the school, you can request an Independent Educational Evaluation (IEE). Professionals outside the school and district perform this evaluation. Sometimes the school requests an IEE when they don’t have qualified experts for a specific issue. Regardless of who initiates the request, the school district will fund the IEE and is obligated to consider the results.

It’s also advisable to be familiar with Prior Notice of the Procedural Safeguards. This specifies that when you submit a request in writing at an IEP meeting, the team is then required under Prior Notice to provide a written response within a reasonable period of time, detailing the request, the response, the reasons for the response, and all supporting evidence. This process makes the team legally accountable for its decisions.

“We’ve had people promise things and not follow through,” says Epstein, “like a teacher who shows a scary movie without considering Joyanna. But every year we find one or two advocates for her, and that makes all the difference.”

If, at any time, you feel your concerns are not being heard and addressed, you can engage a formal advocate through several support organizations (see Resources, below). While you can pay for professional legal advocacy, most organizations listed provide IEP advocates at no cost.

Share the Struggle

Though the process of navigating an IEP is a lot of work, families in similar situations often like to share their wisdom. “Honestly, the most helpful people for us were other parents who had gone down the same road, or people who just listened and didn’t think they had all the answers,” says Epstein. “Of course the professionals want to help—that’s why they do what they do—but they are constrained by privacy issues and confined to certain services.”

The Epsteins created The e Agency to help people navigate a variety of personal challenges related to having a child with special needs, and to create customized activities and services. “So many people helped us,” says Epstein. “Passing that on by becoming mentors to other families has given meaning to our struggle.”

Likewise, Warner found The Arc’s Mobilizing Families group helpful. “They don’t just give you information,” says Warner. “They connect you with a community.” When you look for these or other groups, you’ll find comfort in knowing you are not alone on your journey.

Resources for Parents

• Child Find offers free developmental and physical screenings and evaluations.
• The Arc and its Mobilizing Families program offers training to “help you unlock the mystery of disability resources by giving you the tools and information to help your child thrive.” They also provide IEP advocates at no cost.
• Special Education Advisory Committee (SEAC) attend meetings for the school district where your child attends, for current information on special education issues.
• Understood for Learning and Attention Issues provides IEP lists of terms, rights, logs, and checklists and a downloadable binder to organize everything related to your child’s IEP. Search “How to Organize Your Child’s IEP Binder.”
• A Day In Our Shoes has collected a number of IEP goal banks to help you customize IEP goals for your child and to make sure they are SMART goals (Specific, Measurable, Attainable, Relevant, and Time Bound).
• PEAK Parent Center provides advocates, support groups, and dozens of webinars about IEPs and other topics. They also host an annual conference on inclusion.
• Thrive Center provides parents with information and training about disabilities, as well as providing IEP advocates.
• Hands and Voices provides information, resources, and advocates specifically for families of children who are deaf or hearing impaired.
• Parent to Parent connects parents to one another. A Yahoo group lets you email questions and share resources with thousands of other parents.
• Wrightslaw provides accurate, reliable information about special education law, education law, and advocacy for children with disabilities. The site includes an IEP Parent Input Section, too: wrightslaw.com/advoc/tips/Judy_IEP_Attachment.html,
• The Center for Parent Information and Resources will tell you everything you need to know about IEP and related laws and service. Search “IEP” from the site.
• Building the Legacy: IDEA provides the most updated information from the U.S. Department of Education regarding the Individuals with Disabilities Education Act (IDEA).
• Kids Together, Inc. offers IEP tips, checklists, resources, and information on supportive services and technologies.
• Hearts ‘n’ Hands serves kids with intellectual and developmental disabilities who are transitioning out of the school support system, by offering vocational training and business skills development.