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    Understanding Your Child’s IEP

    Learning to navigate an Individualized Education Program.

    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:

    Make sure that you read:

    Make sure that you write:

    During the Meeting

    After the Meeting

    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.

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