Perkins School for the Blind Transition Center

How to Be Your Child’s Best Advocate During IEP Meetings

Sitting at the long table during CSE (Committee on Special Education) meetings and annual reviews can be unnerving. Even the savviest advocates can become anxious and unfocused during meetings. As CSE and annual review season approaches, we decided to ask some of our most experienced members to share their knowledge. AHA facilitators Amy Perri, Joan Trojak, Donna Benkert, Sue Bachemin, Sue Kinsey, Mike Buffa, and Joan Hourihane contributed their thoughts. There were commonalities in their responses; most notably, the real work should be done before the meeting. There are some excellent suggestions below on organization, making contacts, and preparation. If you are well prepared you’ll be more confident and have a more clear idea of your child’s needs and what your focus should be during the meeting.

Preparation for the Meeting

When you receive an important document (e.g., evaluation, report card) write the receipt date in pencil and put it in one master file or binder. Take time to organize your paperwork and the main goals for your child. As you move into the meeting, stay focused on those goals. Before the CSE meeting, make certain you meet with the teachers and therapists, etc., to find out your child’s present levels of performance. An IEP is only good if it has helped your child make progress during the year, so find out exactly how much progress your child really has made. Get into the school and meet the staff to create a good working relationship before there are any problems, and get involved in the school (PTA, class parent).

You also need to understand how progress has been monitored. Though parents often think they must wait three years, the triennial is actually the minimum frequency: Parents are allowed to ask for standardized evaluations once a year. Yearly testing will give you a clearer picture of whether the IEP needs to be revised to help your child progress.

If you get a sense that your child’s services may be in jeopardy, obtain a reputable private evaluation well before your meeting (note that there are often long waiting lists for good evaluators) and give the reports to the Committee before the meeting.

A week or so before the CSE, prepare an agenda. Read relevant reports in the master file – evaluations and home/school communication notes. Make a general list of problems and potential solutions: put some thought into what you’d like to see for your child in terms of six months, a year, and future success as an independent adult on the autism spectrum. Make a list of goals, services, manpower supports (OT, PT, speech, one-to-one aide, peer sensitivity training, etc.) and important modifications to your child’s school day (e.g., extra time between classes, extra time for test-taking, specific peer support like Best Buddies or other club, safe place or designated personnel like a counselor who can aid if things reach critical mass).Before the meeting, create from this list a clear, one-page, bullet-point Parent Agenda for the IEP with three columns: 1st column – “What we’re asking for,” 2nd column – “School’s response, yes or no,” and 3rd column – “If yes, when, how and who. If no, reason why not.”

Fill in empty columns 2 and 3 at the CSE. This is the only piece of paper you need in front of you at meetings: it will help you stay on track under pressure. (See the Wrightslaw article “How to Use a Parent IEP Attachment” by Judy Bonnell,

Make sure you have all the information you need to make informed decisions. If possible, get a rough draft of the proposed IEP. Let staff know it’s nearly impossible to digest all the information in the meeting without advance preparation. If the district typically does not furnish reports ahead of time, request in writing that you receive copies of reports for review so that you can participate as a full member of the CSE. You have a right to all information that the rest of the team will have. Also put in writing any additional people you want at the meeting (e.g., the gym teacher if adaptive PE is being discussed, etc.).

Advance information should also include the proposed goals from each provider. If the needs are complex in certain areas, a separate goal review meeting with the provider may be warranted. If you’re frustrated with lack of progress, check the goals: are they clearly stated and measurable, and is the method of measurement indicated? It also helps to put time into communicating with providers when things have gone right throughout the school year.During The Meeting: Interpersonal

This is often an emotionally fraught time, so it helps to approach the professionals at the meeting as if you are on the same side – with the common goal of helping your child. Before and during the meeting, take time for some deep breaths, and center yourself. Give yourself the time you need to digest the information before making a decision; there is no law stating how long a CSE should last. Honestly state your concerns and ideas in a candid, non-confrontational way. Be ready to let go of some of the minor details in order to focus on the bigger picture for your child’s success. Be flexible where it is warranted and don’t budge when you absolutely know what your child’s needs are and can prove it.

Make sure that you’re really listening: you may gain valuable insights from other members of the committee, and it helps to understand the group’s dynamic. Agree to whatever you can agree to; ask that unresolved issues be tabled for a future date. At least then there will be a new IEP that includes the things you think will help your child and those things can be implemented without a wait. You may have to agree to disagree. Sometimes it’s worth agreeing to the recommendation to see if it works. But ask for measures that will ensure that, if the recommendation does not work, the Committee will reconvene soon to adjust the IEP. You can ask that a date to reconvene be written into the notes on the IEP. But decide now how progress will be determined.

Bring someone with you: if the mother typically goes alone, remember that we’re not in a post-feminist world, and sometimes “the man with the tie” can give your side more authority. And as with important medical appointments, it helps to have another set of ears and someone to take notes – it’s hard to do so when you’re involved in the discussion. You can also rehearse before the meeting to simulate key arguments or concerns. You can ask your child’s doctor to be present in person or by telephone. Their influential title and lack of emotional investment may make your argument for the needs of your child more persuasive. Pay attention to your own presentation: this is a professional meeting, so act and dress accordingly. You may be listened to more seriously if you check your frustration or anxiety at the door. The same “takes 20 positives to neutralize a negative and 100 to reverse it” rule that works for teachers will likely work on teachers. But along with being professional towards the teachers comes the responsibility to be true to your child’s needs by sticking to your guns on the essentials. Know when enough is enough. During The Meeting:Getting What’s Needed

Make sure that you have your organized binder with you at the meeting: if any questions arise, you will have the information at your fingertips. If you are requesting new services, particularly OT or PT, have a doctor’s prescription ready.

If you don’t understand what the testing means, ask until you do. Ideally, do this prior to the meeting, but if not, ask during the meeting until you understand. Have everyone identify themselves and their title/position; take notes. In some circumstances, it may be prudent to record the meeting; you will most likely need prior approval from the district.

The name of the game is not how much you can get on your child’s IEP but whether the supports really support him or her and enable progress. It will do your child no good, for example, to enforce the “daily speech therapy” provisions of the Part 200.13 if your child’s real communication issues have much more to do with social skills deficits than with frank speech issues. Sometimes it’s better to have the Committee come up with a creative solution than to invoke the letter of the law.

Don’t say that what you want is the “best” for your child. Couch your requests in language from IDEA: that you want an “appropriate” public education that meets the “unique” needs of your child and “prepares” the child for further education, employment and independent living. A school district is not legally obligated to provide the “best” education.If it becomes clear during the meeting that you will need additional documentation or information before making a decision, request to adjourn the meeting. You do not have to sign off on anything.

After the Meeting

You may want to write a letter to the CSE Chair thanking the Committee members for their time and effort. In that letter, summarize what was agreed to and anything that was denied (over your objections). Ask that the Chair to respond in writing if there is a misunderstanding. Keep that letter in your file. Keep in mind that you can always call another CSE at any time if the decisions made at this meeting don’t seem to be working. And remember, if it was not written down, it didn’t happen.

Attending support groups is a critically important way to network and get input from other parents who have “been there, done that.” The support group facilitators have done a terrific job of guiding you through this complex process. We realize that there is a lot of information to absorb. Support group meetings are about bringing your notebook, not just your tissues. Facilitators have shared similar experiences, can empathize with your emotional responses, and will help you brainstorm solutions to your specific issues.

This article was written with recommendations from AHA Association’s support group facilitators Sue Bachemin, Donna Benkert, Mike Buffa, Joan Hourihane, Sue Kinsey, Amy Perri, and Joan Trojak and was edited by Emily Raphael. This article was published in the Winter 2009 issue of AHA Association’s newsletter On the Spectrum. For more information please contact the Asperger Syndrome and High Functioning Autism Association (AHA), Inc. at (516) 470-0360 or visit their website

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