Top 5 IEP meeting tips from a parent advocate

As a parent advocate and mom, Danielle Ward has been in countless IEP meetings. She’s a wealth of knowledge on how to make the most of your time with the special education team. 

From bringing supportive guests (including your child when appropriate) to decoding confusing assessments, Danielle and Julian share practical, clear steps to help you feel confident and prepared for your next IEP meeting.

• Explore: All about IEPs on Understood.org

• Listen: Understood Explains IEPs

• Read: IEP terms to know

• Listen: The ABCs of IEPS

Danielle Ward: One of my first pieces of homework when I work with families is, "Hi, here is your parental rights. Have you read it?" And they say, "Oh, yeah, I skimmed it." And I am like, "Okay, go back in, read it, and then come with me with some questions, and I can break it down and share other resources."

And that is just a great first step so that families feel more prepared and understand the process a little bit better.

Julian Saavedra: That is parent advocate Danielle Ward. Danielle has advocated for her own kids for over a decade, and her company, "Compass Parent Solutions", provides non-legal parent advocacy support and education counsel for families of kids with learning differences. Like me, Danielle has attended many IEP meetings over the years.

And by now, she has a lot of insights into what parents and caregivers can do to make those meetings as productive and successful as possible. I am also super excited because Danielle and I go way back to our time in Understood from the very beginning.

And so, everybody, welcome to "The Opportunity Gap", a show where we talk about how to navigate the education system. I am your host, Julian, an assistant principal with over 20 years of experience. Today, we are giving you five expert IEP hacks, with maybe a bonus or two thrown in there, so you can feel prepared, confident, and grounded the next time you go in for one. Danielle, welcome to the show.

Danielle: Thanks for having me, Julian. I am so honored to be here.

Julian: I appreciate it. Before we jump into IEP hacks, I definitely want to say a couple of things about what can make IEP meetings really difficult for parents in the first place. Can you talk a little bit about that experience?

Danielle: Sure. Well, let's just talk about the biggest elephant in the room. These are parents and they are mama and papa bears, right? And they are emotional about protecting their kids. And so there might be a lot of emotion going into an IEP meeting because they feel that they haven't been heard, or they are nervous about what the school has planned for their kids.

It is their first time maybe going to an IEP meeting, and that is intimidating. So I want to try and set families in the right positive direction.

Julian: Agreed. You know, in my time in IEP meetings, there is a lot of anxiety. Just you can feel the pressure in the room as soon as they walk in. And the stakes feel really high. We are having this formal meeting where a lot of people are at the table. Sometimes there might be multiple teachers, an administrator, the child, different parents, maybe an advocate.

There are a lot of things thrown around that parents might not have the knowledge — or at least they don't think they have the knowledge — that they should when they are sitting at the table.

Danielle: I didn't even know what an IEP meeting was when I went to my first IEP meeting. And I didn't understand that it is also — it is a legal meeting, right? But it should not feel that way. And families' anxiety — great point — is also very high. It is also intimidating, right, all those people, and you don't know who they are.

I have to say, we don't do a very good job of slowing down the introduction portion at IEP meetings so we can really hear what everybody's role is, because they want to get to the next meeting as fast as possible. So I wish we could slow those down a little bit.

Julian: Agreed. Well, that anxiety and the intimidation and all the things that you mentioned, that is why, listeners and viewers, that is why we brought Danielle in. Because hopefully, some of the hacks that she is going to share with you — it is really going to help you understand how to overcome some of those obstacles. All right, Danielle, give us our first hack. What can we do?

Danielle: Right. So the first hack is really something that is in every state. It is understanding your parental rights. There is a handbook in every state, sponsored by your Department of Education, that each IEP team is required to give to you when you start the process, and nobody reads it.

And it is really a disservice, particularly to the family, because it is really important for you to understand your rights to the process, and also your rights before the meeting, during the meeting, and after the meeting.

Julian: And you know, in addition to that, families, I would put a plug in: Understood.org has a lot of great information about your rights. The language varies a little bit depending on the state you are in, but essentially, as you said, there is a lot of legal protection that families should have.

And it will help hopefully ease some of that anxiety because it will help you go into the meeting prepared, understanding what are you supposed to be getting. Hack number two? What do you have for us?

Danielle: Hack number two. Okay, so I really love having my parents prepare their parental concerns before the meeting. So this is — I know you have maybe sent an email or you wrote a letter and share what was going on. But it helps to make sure families are on the same page.

(03:41) The importance of documenting parental concerns and the child's strengths within the IEP.

Danielle: Because sometimes spouse and partner don't necessarily agree. Let's make sure our information is together. It also helps take the emotion out of your presentation, if you will, when they ask what is going on with Johnny. You have it all prepared in writing.

Julian: Can you give a couple of examples of what a typical parent concern would sound or look like?

Danielle: Sure. A lot of times what schools really need to hear is what is going on at home that the parent is seeing, that the teacher and the speech therapist, if you will, don't necessarily know about. A lot of kids mask all day and they are trying to keep it all together so they can get through the day, and they come home and they have a meltdown or they are exhausted, they can't finish homework, they can't focus.

So I really like parents to share what they are seeing at home. The other thing is they might have feedback from other service providers, like a therapist or doctors, that are giving new information that they want to share, and they want to make sure the team is aware of that data.

Also, you know, parents observing what teachers are saying, and that might not be gelling with what the child is saying. And this gets really complicated when we get to middle school and high school, where there is a lot of — shall we say — miscommunication between student and teacher, and then student and parent.

So it is really good to make sure you have all your information in front of you. And also so you don't forget. Sometimes your emotions get carried away with you and you get stuck on point number one. It just helps you remember. It is also really good to have parent concerns in writing because I actually like sharing that after the meeting to the team so they can include it in the IEP.

Julian: Great point.

Danielle: That section of the IEP in everybody's — there is usually a standard format, but there should always be a section for parent concerns and student strengths. And that allows the teams to really get the snapshot in what is going on with the family and the child that they need to be aware of. Would you agree that this is the most read section of the IEP by your side of the house, by the teams?

Julian: Oh, without a doubt. And you know, again, if you notice your eight-year-old who is normally super excited when they come home from school and they want to tell you everything about their day, and if you are noticing that on Tuesdays and Thursdays they come home and they are tired and they are not their normal bubbly self, that is a warning sign that you want to document.

Like something like that where maybe there is a new curriculum that has been put in place on those specific days and it is wearing the child out. Things like that where only you as the parent might be noticing are things that the team needs to be aware of so that they can start working together to figure out what special instruction do we need to put in place.

Danielle: It also could be what happens on the bus, right? So sometimes there are issues on the bus, or if a student has an aide, sometimes there is a miscommunication there where the child is not getting the right support. Everything like that has to be put down in writing and observed.

Julian: Now, from your end, Danielle, is there a specific number of concerns that you recommend? Like are we listing 15 of them? Are we listing two? What would you recommend as a nice, good number that is going to really get things done?

Danielle: Right. So I like five or less. And we don't need to make them up, parents. We need to make sure they are real concerns because the IEP is a living document. We can update it at any time. So what these concerns should be are the concerns right now.

If there is something that is overarching that is an overarching concern, that should actually go up under the special note section of the IEP. So for example, if a child has epilepsy and they take medication, "Please notice the seizure action plan, blah, blah, blah." So that is not a parent concern. That is a special note.

So understanding where things go on the IEP is a lot of what my job is. But I don't want families to write five paragraphs for the parent concern statement. Again, remember: Put yourself in the eyes and minds of the teacher and the therapist and the speech therapist and OT, because they are the ones that have to read it. We want it to be concise and to the point as much as possible.

Julian: Right. How about hack number three?

Danielle: Okay, number three. I would say, you know, you don't have to be alone at this IEP meeting. You are always welcome to bring a guest to the meeting who can support you and knows something about your child. You do have to let the teams know that you are bringing a guest and they have to know their full name. They will be taking attendance. So you are not going to just show up with a guest.

That is just bad practice. Because this is a professional setting, let's give the courtesy, okay? But the same goes both ways. So part of my feedback to teams for families is the family is going to request that they are going to bring someone to the meeting. "Would you please share who is going to be attending on your end and what their role is at the meeting?"

Julian: So when you say bringing a guest, can you give us a couple of examples of people that typically might fit that bill?

Danielle: Yes. So an advocate is always a good idea. I have had family members attend. Maybe it is a sister or an aunt or uncle. I have had grandparents attend. We have also had like a neighbor who has a child who has been through the special ed process. They might be there to take notes and also just to be a support for the family.

I want to make a big caveat here, though, that the purpose of bringing this guest to the meeting is a support role, but also to help explain or share more information about the child. They are not the decision maker. The parent is the only one that can share with the team consent on any of this.

Julian: Acronym alert! Acronym alert! Educational Decision Maker, or EDM. Yes, parents. I mean, we are joking, but honestly, you will see EDM or you might hear that reference. That is educational decision maker. And that is a really important distinction to be made, especially our families where children might be in foster care or wards of the state. Having supports for them as the educational decision maker is really, really important.

And families, one thing that I want to point out that Danielle is speaking of in terms of bringing people over and advocates: It is as simple as Googling special education advocates in your town or your city, because there is a wealth of advocates across every district in the country. You can find support wherever you need it, and it should not be a financial burden for you.

So you should be able to find support free of charge or at low cost if needed. And there is also language interpretation services. So if you are listening or watching and you might need somebody to be there that speaks your home language, that is also something that the district should provide you with information about so that you don't feel alone and you don't feel not supported.

All right, let's go. Hack number four. What is hack number four?

Danielle: Hack number four is the IEP is a document that has to be enforceable, right? So it means it is a plan that allows the students and the teachers and the families to understand the goals and objectives and how the student is going to be supported at school. So the important thing is data. The data that is collected at home, the data that is collected at school — it needs to be referenced in the IEP.

So for example, every three years a child is supposed to have new evaluations done. That is called the triennial evaluation. And that new data needs to be brought into the IEP document — not like the 20 pages of it. There is a synopsis section, but the data needs to be referenced properly in the IEP. So if we are making a decision at the IEP table and we are referencing data, let's make sure it is in the IEP so that everyone is on the same page and we are comparing apples versus apples.

Julian: Hey, listeners and viewers, I have another acronym alert that you might hear related to data. And this is really important to know related to this specific hack. When data is collected, there has to be permission given for that evaluation or reevaluation to happen. So you might hear or sign something called a PTRE or a PTE — permission to evaluate or permission to reevaluate.

And that is something you should get before the meeting happens. Or if at the meeting it is determined that another assessment needs to be done, then the IEP team will ask if you are giving permission to reevaluate the child. And so there has to be signed permission for you to do so. So if you hear PTE or PTRE, it is related to assessments. All of this has to be related to PWN, which is prior written notice.

Danielle: We are going to need a glossary after the end of this with Julian!

Julian: Listen, in my next life, I tell my team that I would like to start making T-shirts and gear that has all the acronyms spelled out for education. I feel like we would make a killing doing that. But yes, the PTRE or the PTE is something that you are going to hear about. Just make sure that that is referenced if any assessments are being asked to be done, because it is really important that you are allowing permission for that to happen.

Danielle: It is a really great point, Julian. I also want to put a shout out there to the families who are leery of having schools do evaluations on their children. And I really want to counsel them that you really should allow these free evaluations done by the professionals in our school districts. They are licensed through your state, they are highly qualified, and they are important to understanding the entire picture of what is going on with you.

Now, if we need additional assessments after it because you don't think they captured exactly what is going on, that is when you get back to the IEP table and say, "I still think we need to do more testing." But if you don't allow the district to test, we don't know. So there is a lot of myths and unnecessary worry by families on this. So more data is better than no data.

Julian: Agreed. You have one more hack for us?

(07:28) Recording meetings and including the student’s voice

Danielle: I do. And it is about recording the meeting. There is a process to be able to do this, and it depends on your state. Every state has different recording protocol, and an IEP is a legal meeting. And so I always counsel my families you have to give at least — I prefer 48 hours notice to the district that you plan on who you are bringing to the meeting, what your agenda items are, and that you plan to record the meeting.

You don't have to tell them why you are recording it. You are not going to share it through, you know, social media, heaven forbid. This is confidential and should be kept — most of my families love it because I want them to be present at the advocacy table. You know, you have to share your information and not furiously writing notes about what the OT therapist is saying.

The only caveat also is remember that if you tell the district you are going to record, it gives them the courtesy that they are going to record as well. I love having the meeting notes as well because it helps the families write a note back to the school, to the case manager, saying, "Hi, we appreciate the meeting. This is what we heard. These are the action items on my end. We would love to hear about your action items here. Do you agree or disagree with what we recognized from our notes from the meeting?"

It allows that continued collaboration to say — Julian might say — "Oh no, actually, we did not agree to that. This is actually what we said," and then that is the clarification. And that is all in writing, because if it is not in writing, it didn't exist.

Julian: It didn't happen. That is correct. And from the school's end, I would 100 percent agree on having just a follow-up conversation in writing. I love getting notes after an IEP meeting, just kind of summarizing what we talked about, but also any positive things that happened from the meeting. I think that goes a long way with school teams especially, because there is a lot of work that the school puts in to create a high-quality IEP. So a recognition of that, it really goes a long way.

Danielle: 100 percent. And a lot of my coaching with families is to talk about putting yourselves in their shoes, you know, understanding that your teacher has 25 plus students and then also has to make sure all the 504s and IEPs have been read, and you know, there is a lot that goes on for them to get through the day. And compassion and empathy go a long way.

Julian: Agreed. So I have one hack myself. I am not the expert as Danielle is, but I do have one thing that I want to call out for everybody involved. Remember that the purpose of an IEP meeting is to support a child. The student is at the center of all of this. And we would be remiss to not include the student's input in the meeting.

A lot of times it is a lot of adults talking, but we forget there is a child at the center of all of this. So parents, talk to your child. Have a conversation with the child before the meeting, include the child in the meeting if you feel that they can advocate for themselves at the meeting, and then follow up with them after the meeting.

And it doesn't matter what age the kid is. If you have your six-year-old that is having a meeting about their ADHD, you could talk to them about, "Hey, we are having a meeting. I would like you to tell us how you feel about this class," or "I want you to tell us what are some things that are going to help you feel better about school." Be sure to let them feel like they have a voice.

I can't stress enough how important it is to include your child in the process. And at the high school level, one of my big jobs in an administrative role is to talk to the kids about their own IEP. Like they should be advocating for themselves. They should know what is in the document. They should know that this is a legal document and it has your name written all over it, and so the protections that are in that legal document should be happening in classrooms.

And if they are not, you need to come to acronym alert — your LEA, your local educational administrator or advocate. And that person — usually the administrator — they are the one that makes sure the IEP is being implemented. And so the hack for this is: Make sure your kids are included. Don't isolate them from this. Don't take them out of this. Because the IEP is going to be a process for a long time. It is not just going to go away. And so this is a process that your children need to be empowered to be a part of.

Danielle: Oh, that is excellent advice, Julian. Because I can't tell you how many times I have to counsel families who don't want to share the IEP with the students because they are worried about mental health. And there are parts of it — so for example, the IEP meeting, they don't need to stay for the deep dive in the evaluations that really, you know, nitpick.

However, I think there is a huge disservice by a lot of families because they are helicopter parents and they just want to — they want to overprotect and they want to run the show. In New Jersey, by the age of 14, children are supposed to be participating in the IEP process. So I think it needs to be way earlier. I agree with you, start them conversation as early as six. A little bit about: "There is a whole group of people at school that are working to support you. Did you know that Mommy talks to them and Daddy?"

That is huge and that gives them like, "Oh, I am not all alone." So the student-focused IEPs are the best. And also, they have to take this advocacy to the workplace or to higher education. The IEP ends when they graduate. So how they advocate moving forward has got to be built on the inside.

Julian: You know, again, we are on two sides of the aisle with this, but hopefully this shows that we can come together and collaborate on supporting our children. So I really appreciate you coming onto the show today.

Danielle: Oh, it is my pleasure. And thank you so much, Julian.

Julian: Listeners, I did do a couple of acronym alerts. There are a lot of acronyms out there in education and especially in special education. My path to retirement will be to design a clothing line with all the acronyms for all of us, but until that time happens, Understood has put together a list of resources to help you figure out and decipher all of the different acronyms that you might encounter during this process.

So check in the show notes and check in the resources so you can learn more about the information you might need. Danielle, I appreciate you, and I really hope you come back and share some more information with us in the future.

Danielle: Anytime, Julian. It has been my pleasure.

Julian: Thanks so much for listening today. We love hearing from our listeners, so if you have any thoughts about today's episode, you can email us at opportunitygap@understood.org.

And be sure to check out the show notes for links and resources to anything we mentioned in the episode.

This show is brought to you by Understood.org. Understood.org is a nonprofit organization dedicated to empowering people with learning and thinking differences, like ADHD and dyslexia. If you want to help us continue this work, donate at understood.org/give.

Julian: "The Opportunity Gap" is produced by Julie Subrin and Gretchen Vierstra.. Video is produced by Calvin Knie and edited by Jessie DiMartino.

Briana Berry is our production director. Jordan Davidson is our editorial director.

From Understood.org, our executive directors are Laura Key and Scott Cocchiere.

Thanks again for listening.m.