Building the IEP Puzzle

Tips for building effective IEPs and improving your child’s educational experience

Whether it’s your first Individualized Educational Plan or your 10th, it never hurts to add some valuable tips to your IEP toolkit. Here are words of advice from parents and experts.

Tip 1 — Be the best advocate you can be.

“You can do a lot to improve the quality of your child’s life and education, and there’s no higher calling,” says Tina Riley of Jay, Maine, whose son, Bryan, 6, has Duchenne muscular dystrophy (DMD). “Do your homework, and know as much as you can about your child’s disease and special education laws.”

Knowledgeable parents have more credibility with school staff and, when necessary, can challenge the school’s recommendations more successfully.

Where do you get this kind of knowledge? You can’t always rely on school authorities to know the answers or even share information, cautions Stephenie Och of Swanville, Minn., whose son Ethan, 9, has type 2 spinal muscular atrophy.

Och works closely with a county social worker who provides her with relevant reading material and attends Ethan’s IEP meetings.

Learn how to be a better advocate by attending parent workshops and conferences, advises Pat Howey, a special education advocate based in West Point, Ind. She recommends the Council of Parent Attorneys and Advocates’ annual national conference.

Other resources include special education attorneys, books, the Internet, and your local MDA health care services coordinator and MDA support group members (see IEP Resources below).

Each state also has a Parent Information Center; they go by different names, so contact your state department of education or district special education office for more information.

Tip 2 — Learn from other parents.

“We have a friend who has a kid with the same diagnosis as our son,” says Mary Winkle of Eolia, Mo., whose son, Zack, 8, has congenital muscular dystrophy. “She told us what was in her IEP, and there were things in there that we didn’t even know you could ask for, like air conditioning and tinted windows in the bus.”

Take time to locate and connect with other parents through support groups, online chats or simple conversations at social events.

Howey suggests that parents attend IEP meetings with each other, not only for support but also to see what issues may arise so they can figure out strategies for their own IEPs. 

“Utilize your support systems,” Och says. “Everybody goes into it feeling totally alone until you talk to another parent who’s been there.”

Tip 3 — Be well organized.

Some experts suggest that parents prepare for an IEP as they would for an important business decision or major exam.

Study the law, your rights and your child’s educational file, and have information readily available for future reference. Keep a three-ring notebook that includes past IEPs, the complete educational file, IEP meeting notes and other pertinent notes. 

Documentation is the best defense if there’s a conflict or disagreement over services, so keep good notes detailing phone calls and other interactions with school personnel.

Wayne Steedman, a special education law attorney and advocate in Baltimore, recommends also including “unofficial” documents that may not be in your child’s file.

For instance, parents can request copies of teacher notes used to evaluate the child’s progress. If a teacher consults the notes to complete progress reports or report cards, those notes are part of the file, just like test scores, Steedman says.

Tip 4 — Distribute a parent report prior to the meeting.

A “parent report” helps the team learn more about your child as a person.

Whether simple or complex, the report should discuss the child’s strengths, needs and challenges, as well as your goals, objectives, modifications, adaptations and suggestions. The report also can be a useful educational tool about neuromuscular disease and its effects on your child.

Distribute the parent report at least a week before the meeting because, says Howey, “nobody likes to have a multiple-page report thrown at them and have to digest it at once.”

Riley says she used a parent report to “minimize the apprehension the staff would feel about a special-needs student,” and to help get all of Bryan’s needs met by fully informing the team. The report helped make a good first impression, and the team used it to write an effective IEP.

“I wanted to bring his individuality to it, and make sure people knew that we were talking about a delightful, charming little boy, not a disease with a kid attached to it,” she says.

Tip 5 – Know what you want.

“You really need to go in knowing your options and what services are available,” says Renee Rolwes of Fenton, Mo. “If you don’t know what the special education system has to offer, how do you know what’s the best course for your child?”

To learn about your options, take advantage of the special education office’s resources, Rolwes advises. Her son, Corey, 6, has DMD.

In addition, Katie Pollman, an MDA health care services coordinator in St. Louis, recommends gathering research, data or testimonials from experts to show that certain accommodations or modifications improve a child’s chances for success.

Once you’ve gathered information, figure out what you want. Go into the meeting with a general idea of how much time you want for services such as physical, occupational and speech therapies, and which accommodations or modifications you believe are necessary to help your child with academic and functional limitations.

For instance, some parents request curb-to-curb pickup by the bus; physical assistance opening heavy classroom doors; larger desks to accommodate wheelchairs; extra time between tasks or assignments; breaks for fatigue; shorter assignments that focus on the mastery of key concepts; and computers with voice-recognition capabilities.

Tip 6 — Bring backup.

IEPs can be stressful. Alleviate anxiety by taking someone with you — a spouse, family member, friend, another parent or your MDA health care services coordinator.

In St. Louis, Pollman attends IEP meetings to offer support and serve as a resource. She educates the team about the child’s specific neuromuscular disease and how it affects his or her functional performance.

Rolwes says that Pollman has been an asset at IEPs because she has “objective knowledge about neuromuscular disease” and can justify why Corey needs certain types of assistance.

Tip 7 — Build relationships, trust.

The IEP team is just that, a team, so don’t walk in thinking that it will be an “us versus them” situation. Teamwork is the key to building an effective IEP.

Rolwes is “constantly looking at how we can implement the IEP and work together to make it easier for my child and the teachers down the road.”

She encourages parents to be visible — volunteer at school and meet regularly with teachers and staff. “When they know you’re an active participant in your child’s education, they’re more willing to take you seriously,” she says.

Rolwes speaks with Corey’s school physical therapist every week and regularly consults with the special education teacher for help with locating resources.

Another tip: Communicate often.

“Show that you’re willing to listen, and they’ll give you the same respect,” says Rolwes. “From there, you can negotiate.”

Don’t expect perfection, she adds, but work together to find common ground because “the really tough part of a bad IEP experience is that it’s your child who pays the big price.”

Tip 8 — Keep your cool; stay focused.

“If the parent gets angry, then they become what the school is trying to say they are — too emotional to understand what the child needs,” Howey emphasizes.

If you reach your boiling point during the meeting, Howey suggests asking for a break. Then, regroup, get your thoughts in order and diffuse any negative energy. Or, you can stop the meeting to reconvene at a later date.

Also, you don’t have to sign the IEP at the meeting. It’s your right to take it home to read again before signing it.

When disagreeing with the IEP team, don’t attack or lay blame. If there’s a problem, find a way to make improvements. Try to make your case with research and facts.

Rolwes says, “You have to walk a fine line, and keep your cool, and you have to remember what it is that you’re actually fighting for.”

For example, when the school district superintendent tried to alter the route of the bus that Zack Winkle rides, his mother says, “He basically told me that my child doesn’t matter. I was furious, but I tried to keep my cool.”

When the superintendent said he’d consult with the district’s attorney, Winkle said she’d also consult an attorney to determine her child’s rights. However, she was careful not to threaten legal action.

“Step back and pick your battles,” Winkle says. “The whole point of the IEP is that you want your child to enjoy every aspect of school, to learn what everybody else is learning and to be challenged.”

What's an IEP?

An Individualized Educational Plan is the blueprint for the education of a child with a disability. IEPs address physical assistance, academic adaptations and technological equipment.

By law, IEP meetings must be held at least once a year, but parents, teachers or administrators may call for one at any time. 

The IEP team may include parents, general and special education teachers, the principal, school district administrator, adapted physical education teacher, specialists, therapists and the child (if appropriate). With the parent’s and school’s approval, some IEP members may be excused from attending if their area won’t be discussed or modified.

What’s IDEA 2004?

The Individuals with Disabilities Education Act is the federal law guaranteeing children with disabilities access to a public education. The original special education law enacted in 1975 was renamed IDEA in 1990 and was most recently reauthorized by Congress in 2004.

Among IDEA 2004’s notable changes is the requirement that IEPs consider “functional” as well as “academic” goals. This ensures that qualifying students with neuromuscular diseases who are keeping up academically but who have physical impairments will receive special education services, including occupational and physical therapy.

IEP Resources

Quest articles

Books 

The Complete IEP Guide: How to Advocate for Your Special Ed Child, 4th ed., by Lawrence M. Siegel, 2005. NOLO, (800)728-3555, www.nolo.com.

A Parent’s Guide to Special Education by Linda Wilmshurst and Alan W. Bruce, 2005, Amacom, (800) 262-9699, www.amanet.org/books.

A Teacher’s Guide to Neuromuscular Disease (booklet), MDA.

Wrightslaw: From Emotions to Advocacy — The Special Education Survival Guide and Wrightslaw: Special Education Law, by Pam Wright and Pete Wright. Harbor House Law Press, (877) 529-4332, www.harborhouselaw.com.

Web Sites & Organizations 

Parent Information Centers/Parent Advisory Councils
Contact your school district special education office or state department of education.

Council for Exceptional Children
(800) 224-6830, www.cec.sped.org

Council of Parent Attorneys & Advocates
(443) 451-5270, www.copaa.org

Families and Advocates Partnership for Education (FAPE) Project 
(952) 838-9000, www.fape.org

IDEA Partnership
www.ideapartnership.org

National Center on Educational Outcomes
www.education.umn.edu/NCEO

National Dissemination Center for Children with Disabilities 
(800) 695-0285, www.nichcy.org/idea.htm

National Early Childhood Technical Assistance Center
(919) 962-2001, www.nectac.org

Parents Educating Parents and Professionals
(800) 322-7065, www.peppinc.org

Reed Martin Special Education Law
(304) 598-3406

SchwabLearning.org
www.schwablearning.org

Technical Assistance Alliance for Parent Centers
(888) 248-0822, www.taalliance.org/centers

U.S. Department of Education — Office of Special Education and Rehabilitative Services
www.ed.gov/about/offices/list/osers
Search for “A Guide to the Individualized Education Program” and “Building the Legacy: IDEA 2004.”

Wrightslaw
www.wrightslaw.com