Need help advocating for your kid at school? We talk to a pro

In this episode of In It, hosts Gretchen Vierstra and Rachel Bozek welcome professional parent advocate Danielle Ward. Danielle started out advocating for her own kids, several years ago. 

Now, through her company Encompass Parent Solutions, she offers families of kids with learning and thinking differences non-legal help with advocacy, support, and education counsel. 

Danielle chats with Gretchen and Rachel about some of the most important dos and don’ts for parents who are advocating for their child at school. Danielle outlines the steps to take when your child is struggling and how to recognize when a parent advocate might be necessary. She also explains the difference between a parent advocate and a special education attorney.

We love hearing from our listeners. Email us at init@understood.org.

• 8 steps to advocating for your child at school

• Where to find legal help

• The difference between special education advocates and attorneys

• What is the Individuals with Disabilities Education Act (IDEA)?

• Listen: An attorney’s advice on special education disputes

(00:59) What does a parent advocate do?

(02:56) Description of Danielle’s first IEP meeting

(04:57) Understanding the difference between parent advocates and lawyers

(08:13) Whether or not kids should be in meetings at school

(09:22) Steps to follow when you sense your child is struggling

(10:33) What to do when your child has a diagnosis

(15:24) Tips for writing an effective letter or email

(19:02) Dos and don’ts for child advocacy

(22:06) Guidelines for recording meetings

Gretchen: Hello and welcome to "In It," a podcast for families with kids who learn and think differently.

Rachel: Here you'll find advice, camaraderie, stories of successes, and yes, sometimes failures from experts and from parents and caregivers like you.

I'm Gretchen Vierstra, a former classroom teacher and an editor here at Understood.org.

And I'm Rachel Bozek, a writer, editor, and mom who has definitely been in it. Today we're bringing you some hot tips on how to advocate for your kid with learning and thinking differences from a parent advocate.

Gretchen: Danielle Ward's been a parent advocate for her own kids for over a decade. Now she does it professionally.

Rachel: Her company, Encompass Parent Solutions, provides non-legal parent advocacy, support, and education counsel for families of kids with learning differences.

Gretchen: We're delighted that she agreed to come on the show to share some of that counsel.

Rachel: Welcome to "In It," Danielle.

Danielle: Hello, ladies. It's so lovely to chat with you today.

Rachel: Let's kind of start with the basics. What is a parent advocate?

Danielle: A parent advocate is basically a champion for parents. What we do is help families navigate pretty complicated systems in education and we help them understand their rights in the processes that go into special education.

Gretchen: That seems like a necessary role, for sure. Having worked in a public school for many years, I know that special education can be very complicated. So, what are some typical scenarios where a family might bring you on? Can you give us a few concrete examples?

Danielle: Yes, there's a few ways families reach out, and many times it's when it's a crisis, right? So, their child is really struggling in school and they heard that maybe an intervention team is helping or they recommended that their child be evaluated and they don't understand what the process is for that. So, it's really helping to explain the systems for a lot of families, you know, when they're just being introduced.

Also, I have families that reach out to us for, they have had an IEP for a long time, and things don't seem to be progressing, or they want to revisit the goals in the IEP, or they're struggling with some of the interventions that are being used or the instruction. So, for a dyslexic child, maybe they're not progressing in their reading, and the family needs help trying to navigate how to advocate for a different intervention.

Rachel: So, how did you get into this work?

Rachel: I have two children that are now grown and flown, but two children with learning and thinking differences, and I have been advocating for their, you know, supports in school since they were really little. I was lucky that I had really strong teachers when they were young and they noticed signs right away.

And so, I was able to get an IEP for both kids really young, but that first meeting I was floored. There was all these people across the table, I didn't know what they were doing and why they were there. And there was all these documents and this evaluation that was done. I had no idea about any of that process.

So, I started to learn all I could learn about IEPs and children's disabilities. I took all that knowledge and started support groups for my local schools. And that kind of blossomed into working more one-on-one with families down the road. I did work at Understood previously as well in the communication side. So, a lot of my communication skills are being used every day in advocacy.

Rachel: Yes.

Danielle: So, you know, meetings, agenda etiquette, coaching families on gathering their points before they go to a meeting, their key messages that they wanna share.

Gretchen: Yeah. I mean, let's face it, we know that sometimes half of the battle can be how you present information, how you talk about it, how you ask about it. And when you're so emotional and really just tied to all the challenges, it can be hard to present things in the best way.

Danielle: A hundred percent, and I know even with advocating for my own children, I would get emotional.

Gretchen: Mm-hmm.

Danielle: And I'm like, why am I getting so emotional? Because you are a mama bear, a papa bear, and you are going to defend your children to the nth degree, and you feel that you have to fight for your rights. And it shouldn't feel that way. It should be more collaborative with the school.

Gretchen: Yes.

Danielle: And that's what I try to bring to the table. So, I help lower the temperature if there's conflict and allow them to communicate better. That's the number one reason parents need advocates is the communication has been broken. And then feathers are ruffled and now we're starting to take action and might be litigious. We do not want that to escalate. So, we want the school and the families to collaborate together as best as they can.

Gretchen: So, how do you know then if you can benefit from hiring a parent advocate or if you actually might need a lawyer?

Danielle: Right, we do not practice law, but we are very familiar with the nuances in both laws as the IDEA and the Rehabilitation Act, Section 504. So, we understand the process and the procedures that schools and parents have to navigate. Parents don't understand their rights, and so showing them the information of how to access their rights, and I mean, there's a tremendous amount of resources at Understood that we share often because it's in layman's terms, what's available from the Department of Ed and our state institutions are still very wonky legalese.

Gretchen: Yeah.

Danielle: So, advocates are aware of when the process and the procedures are going well and when it's broken or there's been a compliance issue. And we can raise it. We can help families file complaints with the state appropriately, but we also can present to attorneys a case that says, "I've taken this as far as I can, and now it's time for an attorney consult." And we as advocates are trained, I was trained under COPA, which is the Council of Parent Attorneys and Advocates. It's a national nonprofit that their main focus is advocacy training for parents and attorneys.

And the nuances on this area is essential because if you take it a step too far, you could be sued for practicing law. And we don't want advocates to do that. We have to stay in our lane, you know?

Gretchen: Right.

Danielle: And I work with attorneys all the time. I ask them lots of questions. They're like, "Please call us all the time." I think that's the secret spot that we provide for families. You know, before they're getting a large retainer to fight a big battle, you know, they need to understand their rights and if they have a case, I think that attorney consult, it's a one hour session, is really important to many families and they don't know that they can do that.

Gretchen: Mm-hmm. Yeah. And you said, obviously, as a parent advocate, you understand all of the laws. And one of those, I just want to make sure we say it, is IDEA, which stands for Individuals with Disabilities Education Act.

Danielle: That's correct. There are two separate laws, and of course, a lot of my job is explaining the differences between a 504 and an IEP, I mean, all day long. And it's also hard for advocates to attend a lot of 504 meetings. There is a lot of, I guess, poor judgments on districts that they don't want all these people attending these meetings with families, and I think that's a disservice, because families need support in navigating meetings that are intimidating.

Rachel: Yeah, that is so true. At 504 meetings, my experience with them, while the teachers and administration who are there have been super helpful, I've been really, really lucky in our district, but it's like I go in and it's myself and then all people from the school, anywhere from like three to six. And then it is that feeling of like, well, do I wanna like fill up the room with more people and like totally overwhelm my kid if they're in the meeting? And that can be a lot.

Danielle: And I think another thing that advocates really can bring to those meetings is knowing when to introduce the children into this advocacy road. Because they have to carry this forward. The disabilities are for life, for many children. And they need to understand how to navigate that. And many families want to shield their children from this adversity and animosity.

And yes, certain meetings, absolutely, the children shouldn't be at, and they should be age appropriate. But I do, in New Jersey, it's the age of 14, is when they can absolutely start participating. But I have many friends and advocates that started their children much younger, and it's reaped great rewards because hearing it from their children themselves what's going on is very powerful in the meeting.

Rachel: Danielle, we thought it could be useful to toss a few scenarios your way, situations parents or caregivers might find themselves in, and see what sort of advice you might give them.

Danielle: You're putting me on the hot seat, Rachel.

Rachel: Yeah. Hot seat time, it's time.

Danielle: OK.

Rachel: So, let's say your child is struggling in school and no one seems to be doing anything about it and you feel kind of lost. Like who do you turn to or what can you do first?

Danielle: The first step should always be the teacher, a meeting or start with an email, just wanting to get an update with progress. And then the next step would be, I always reach out to either a counselor at the school, maybe it's depending on what age they are, the guidance counselors, and the social work teams, usually are amazing advocates to help families navigate the systems, and also. They're also the team members that do any kind of interventions that happen in the school.

Interventions, in a positive manner, families don't know what that is, so when you have struggling with reading, for example, they have a team that will come in and do assessments and training, or one -on -one work with your child. So those kinds of systems are usually with the guidance and the social work teams. And then if they don't get any elevation with that, then we go to the principal. you reach out and you ask for a meeting to work on finding ways to support your child who is struggling.

Gretchen: OK, here's another one. You, let's say your child has been diagnosed with dyslexia or ADHD, so you have this diagnosis and you're not sure exactly what happens next. Who are you supposed to talk to in that scenario?

Danielle: Yes, and this is like a million-dollar scenario because this happens a lot. Parents assume that they have a diagnosis from a doctor or a therapist and they just need to bring it to school, and the nurse is going to stamp it and then you're going to get an IEP. That's not at all how it works, unfortunately. Not every diagnosis allows the child to have access to an IEP or a 504. You actually have to have a criteria, and every school district has a different unique formula of a discrepancy between your ability to learn and where you are performing. And that gap is what is being evaluated to see if you need specific instruction or you need related services or supports.

So, that process is a written letter that a parent has to write either in an email or letter. Some school districts are still making parents print out a letter and walk it into the Board of Education. There's a process, and every website for your school district should be laid out, the process for requesting an evaluation eligibility meeting for either a 504 or an IEP.

Gretchen: So, you've got to take your diagnosis and write a letter.

Danielle: Write a letter.

Gretchen: All right.

Danielle: And you have to follow up.

Gretchen: Exactly!

Danielle: Because once you send the letter, they have 20 days to respond.

Gretchen: OK.

Danielle: They have to respond, and you actually have to have a meeting to discuss your request.

Gretchen: Got it.

Rachel: You mentioned that your mission as a parent advocate is to help families communicate with schools better.

Danielle: Yes.

Rachel: Besides helping them communicate more clearly, is part of this also about helping them with the emotions that are coming up around the situation? Like, for example, if a parent emails the teacher with a question because they're concerned about how their child is doing in the class, and they feel like their response is rude or not to their liking, and now they're angry and upset, does that come into play in all this?

Danielle: It's a great observation, Rachel, and it 100 % does. And it's, a lot of our work and our training as advocates is understanding what is a real issue and what is hurt feelings and ego bruising. I wanna say 80 % of what families bring to me is emotional trauma with personalities. There's 20 % of an issue here that we have to address.

So, we spend a lot of our time coaching families because there is a lot of micromanaging of teachers and children. Parents have too much control. I do speak to a lot of families about you need to know and trust the systems and the teachers know what they're doing. And when that breakdown of trust happens and you just tried to micromanage a teacher, it's going to be a very difficult road for you to advocate.

Rachel: Yeah.

Gretchen: So, then let's say you have been responding and maybe even like freaking out or overreacting a bit as a parent and now your relationship with the teacher or your contact at the school is not so great...

Danielle: Right.

Gretchen: How do you get it back on track?

Danielle: I'd definitely hire an advocate because you need someone who is not emotionally attached to either party but is trained to collaborate and to mediate appropriately so that we move the conversation forward and we can find a resolution together. I often spend time with families before those meetings to have them sit down and prepare their parent concerns ahead of time. Bring a snapshot of their child, you know, their strengths of the child, the challenges they're seeing at home, that redirects the narrative back to the child and why we're there and not all this bad behavior between personalities, the teacher, the parents, the administrators.

Sometimes we can't resolve that in a meeting and then we have to go to actual mediation, which is actually an excellent process that is free for families and allows the parent in the school district to meet with an unbiased, usually it's a judge or a trained mediator who actually can help resolve conflict and have resolution, you know, and move onward. And families feel like they were heard, they were seen, and now we can move on.

Gretchen: But it sounds like really families need to try to take a deep breath. And when they write and communicate with the school to try to do so in a way like not filled with emotions, right? That seems to be the best way to avoid everything going south.

Danielle: Yes, and it's hard to do because when you get an email, you want to like pour it all out.

Gretchen: Yeah.

Danielle: It's really inappropriate. So, I always ask my families, write it all out to me. Send it to me first. Send it to a friend first, and then give it 24 hours, and then take a look at it with a clear head. Because you can probably cut that down a third and maybe make it a little bit more professional. You know, families, they get really upset and they don't want to be nice. And I get it, they're really hurt. And we've, as parents with kids with learning disabilities, we know, we've walked in their shoes. And so, it's really hard when you're in it...

Gretchen: Yes. Exactly.

Danielle: To be able to see the forest through the trees, right? So, you have to, you need a seasoned person that has your back that can help navigate that for you. And it can be a friend, a grandparent, whatever, but really give yourself 24 hours and some grace before you hit send.

Gretchen: I appreciate this, too. From the teacher's side, I will tell you that when I would open my inbox and it would be filled with emails from parents, if I'm going to triage, right? And like, who can I reply back to first and solve the problems for first? I'm not going to go to the one that's a wall of text, you guys.

Danielle: That's right. Know your audience. You have to know your audience.

Rachel: Hiring a lawyer, as we know, is very expensive.

Danielle: Yes.

Rachel: Hiring a parent advocate might be out of reach, too.

Danielle: That's correct.

Rachel: So, maybe you can help us figure out some things that parents can do on their own before they turn to hiring a professional or if it is just like not an option for them.

Danielle: Yes, I am a big proponent of having families educate as much as they can before they reach out to an advocate. I am a huge proponent of the parent training and information centers in each state. Every state has a parent training center under IDEA, and this state office is supposed to provide free resources and training. Many offer a like 800 number for families to call when they're having a crisis. Usually it's at the bottom of every IEP. That is a great first place to get training. They provide a lot of parent training and resources. And also they have volunteer advocates, many of them.

Other great resources are looking at your local school's special education parent advocacy groups. They're called CPACs. I know special education and all the acronyms.

Gretchen: I know, it's alphabet soup.

Danielle: It is just madness. But CPACs, most school districts have them and they are volunteer special education parents who have veterans in the field, right? And so, they're a great first place to stop for families to get some support. They usually have the best resources, you know, at their fingertips and they want to share it because an informed parent allows the process to go so much more smoothly for school districts. You know, when families are struggling and it's clunky, that's when systems break down.

Rachel: Can you give our listeners some other tips on dos and don'ts as they prepare to maybe step up their efforts to advocate for support for their child at school?

Danielle: Yes. Do get more informed about the special education laws that you are gonna be navigating. So, every state has a parental rights manual that is produced by this Department of Education. Parents should really read through that, ask questions, talk to your case manager about it, or your local CPACs. Really get informed on the process because that's your procedural safeguards. These are what help allow you to have power and autonomy in the meeting.

I also want families to remember that in those meetings, particularly the IEP meetings, once you have one, you are an actual team member of that IEP team. So, your voice matters. And once you start feeling that, you can act like it and it will show up across the table. Other tips for families, definitely when they're sending emails to the child study team or to their teachers, please stop replying to the long email chain. If you need to track it for future documentation, it gets lost.

A big tenet in advocacy is if it's not written down, it did not happen.

Rachel: Yeah.

Danielle: So, try and organize your emails and your documents so that they're easy to find. So, that means when you send an email, the subject header is very specific and you make sure you're copying writing it to other correct people. That's a huge one, and a lot of families, I coach them to start a new email that's just for your communication with the special ed teams. That way, you can track that one email separately from your personal email and your work email.

Rachel: Oh, like a separate email address. Yeah.

Danielle: Yes, thank you. A separate email address, so you can just really start organizing your files electronically. And of course, the IEP binders, I'm a huge fan of that. Please keep track of all your IEPs in your documentation and to bring it to the meetings. I find a lot of families don't come prepared and then they can't advocate properly.

I also think families forget to include their pediatrician in this conversation. They don't reach out to them to give them updates on what's happening at school. Pediatricians are another first responder to families when kids are really struggling because they can provide recommendations for evaluations like with a neurologist or a speech language therapist. And a lot of that's covered under your insurance.

I also like that to be a parallel path when families are advocating at schools because schools can only evaluate so much. Families also have to do a lot of work to get a real 360-degree view of their child.

Rachel: I love all these practical tips you're giving us. You got any more up your sleeve?

Danielle: I also recommend that families always request to record the meetings. You have to do that in writing at least 24 hours in advance. That's the etiquette. Depending on your state, there is restrictions to that. It has to be 48 hours and so on and so forth. But it is federally mandated that families can record their meetings. Many special ed attorneys will tell you many families aren't using that. And that's also a great way to take the notes for you, right? Now we have all this AI...

Gretchen: Right. Yeah.

Danielle: Resources that they can record the notes and give you the summary.

Gretchen: That's smart.

Danielle: And then after those meetings, you send a follow-up email that says, "Hi team. So glad we met. This is what I heard in the meeting today, and these are the action items."

Gretchen: Mm-hmm.

Danielle: "Looking forward to teacher X giving me this and social worker Y doing this," you know, this is how in writing you're moving this process along and advocating.

Gretchen: Can you send the transcript?

Danielle: Yes.

Gretchen: As proof, like, "And attached, find the transcript."

Danielle: You absolutely can. You absolutely can.

Gretchen: Highlight everything people said.

Rachel: It makes so much sense. Because really like, why would anyone involved not want that, right?

Gretchen: Right. Exactly.

Rachel: And in many of these cases, a parent may also have ADHD and might not be like running through this meeting with like they're not going to remember everything that happened in that conversation. That is like a thing we know, right? And so, when you're already like hopped up on emotions and maybe you have ADHD.

Danielle: The adrenaline is going. Yeah. It is really hard.

Gretchen: Yeah.

Rachel: It is really hard and because that has, that's happened to me in meetings where afterward I'm like "Hey, just remind me about that one thing," like why not record it?

Danielle: Well, you also can, you know, families don't know they can take a break in the meeting, "I just need a minute, I need to pause." That's another tip. The key with recording, yes, it might be upsetting to the teams, but now with all these AI devices and the ability to capture notes, this is just a best practice to make sure we're held accountable on both sides.

Rachel: Any final words of advice for parents who are navigating all this without the help of a parent advocate?

Danielle: Yeah, so, I think parents forget how strong they really are because they get beaten down by the feeling of being overwhelmed all the time and trying to understand what's going on with their kiddo. And they are lost in either trying to get a diagnosis or they're lost trying to get support from a spouse or a partner in believing what they're seeing. And so, they can get overwhelmed and really burnt out.

And so, I really want families to reach out to their community to try and get support because they're not alone. And that is the major reason why I went into this work is that I love working one-on-one with families. I know their pain, and I want to bring my authentic self to them to help them navigate this and know that they can get through the other side. That there is hope. And every child is a puzzle, and so that's the other fun thing about us is like with teaching, you know it's how can I get this kiddo to you know, learn math, you know, and learn how to read better?

And it's just for us as advocates, it's really how we can give the families the confidence to be able to navigate this, and then they can fire us because we're not supposed to be around for like for like a year or so. We're supposed to be there, and my average is three to six months...

Gretchen: OK.

Danielle: With families, unless you know, some... I follow a school year very much for a lot of families. They bring me in when they need me to help with advocating for certain meetings and for reviewing data. But it's really the, just the intense period is usually a three to six months, because I want to give them the tools to be able go out and do this for themselves.

Gretchen: Thank you so much for all of this amazing advice.

Danielle: My pleasure.

Gretchen: You can find more parenting advocacy insights from Danielle on her website, EncompassParentSolutions.com.

Rachel: Thanks so much for listening today. If you have any thoughts about the episode, we'd love to hear from you. You can email us at init@understood.org.

Gretchen: And check out the show notes for this episode, where we have more resources and links to anything we mentioned.

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

Gretchen: "In It" is produced and edited by Julie Subrin, with additional production support from Cody Nelson and Samiah Adams. Justin D. Wright mixes the show, and Mike Errico wrote our theme music. Briana Berry is our production director, Neil Drumming is our editorial director.

Rachel: From Understood.org, our Executive Directors are Laura Key, Scott Cocchiere, and Seth Melnick. Thanks for listening.

Gretchen: And thanks for always being in it with us.