Individualized Education Programs (IEPs) and 504 Plans

View episode transcript

April 29, 2025 / Termination Date: April 29, 2028

Featured guests: Ashley Ellis, Learning Specialist, Michigan Medicine

Objectives

• Define IEPs vs. 504 plans.
• Build evidence-based IEP/504 plans based on diagnosis.
• Aide families in navigating the IEP/504 systems.

Resources

• What is IDEA? A guide for educators and parents. (We Are Teachers) 
• What is FAPE and how is it different from inclusion? (We Are Teachers) 
• Education-based evaluations for autism spectrum disorder. (The Michigan Autism Council) 
• Differences between a 505 plan and an individualized education program (IEP). (National Education Association) 
• How to get help when your student is struggling in school. (Student Advocacy Center of Michigan)

CME

Credits available: 0.75 credit

To enroll for CME credit, visit our CME course overview page for CME credit, or complete this survey for social work CEUs.

Visit the Breaking Down Mental Health podcast website for more information about this episode and the series.

Breaking Down Mental Health is a part of the Michigan Medicine Podcast Network. You can subscribe to Breaking Down Mental Health podcast wherever you listen to podcasts.

Transcript

Syma Khan:

Hello and welcome to our final episode of season four of Breaking Down Mental Health, with myself, social worker, Syma Khan, child and adolescent psychiatrist, Dr. Heidi Burns, and nurse practitioner, Dr. Christina Cwynar. Today, we're joined by Ashley Ellis, a learning specialist, to discuss IEP and 504 plans. Ashley is a special education teacher who graduated with her master's from Michigan State University, and currently works in the Child and Adolescent Psychiatric Unit at Mott Children's Hospital. She has a passion for problem solving in order to support struggling students. Thank you so much for joining us today.

Ashley Ellis:

Thank you for having me. I'm very excited to be here.

Heidi Burns:

All right, Ashley, let's start from the very basics here. What is the definition of an individualized educational plan, an IEP, and a 504 plan? And what are the differences between the two?

Ashley Ellis:

Ah, yes. Okay. That is a great question. Let's start. Most people don't know that kids in schools can get universal supports. Those are such things as needing to take a break, going to see your counselor, taking a walk. Universal supports. That also may mean right now, because of COVID, that kids can use their technology, so Chromebooks, their own personal computers. That right now, is a universal accommodation. That's the first basic level, but to answer your question about a 504 and an IEP, a 504 plan is the next step up from the universal accommodations. It's some support that the kids would need to be as successful as their same aged peers. There's a lot of different areas that can qualify a child under a 504 plan. Those areas are about more of daily living, sleeping, hygiene, I want to say school avoidance. The areas of, can you function? Can you get up and function?

There's a lot more, and there's great resources online where you can also, if you need more clarification, you can look up differences between IEPs and 504s, but a 504 is very broad and they keep that for a reason, so that more kids, I think, can qualify under a 504 versus an IEP. An IEP has very specific criteria under 13 areas. It's a longer process as well. There's a psych evaluation that has to go into that. Whereas, a 504 is like, teacher observations and a doctor's note, different type of things. Whereas, an IEP is a full process of a large team of people that evaluate this child, also within class. And some of those areas are ASD, autism, cognitively impaired, deaf and blindness, deaf and hard of hearing, early childhood development, emotional impairment, other health impairment, severely multiply impaired, specific learning disability, which also branches out into your specific core areas. Are they math ... Have a math disability? Do they have an English disability? It's normally reading or writing, which is also broken down. And then, those are normally the ones we see.

We don't ... Not that we don't love science and history. No offense, science and history teachers, but those are normally not the core areas we think about because within those, we can read, we can write, but are we struggling with reading comprehension, writing, those things. Speech and language, traumatic brain injury, and visual impairment. I will say that a lot of times, kids that are younger qualify for a lot more of speech and language, because they're first learning in kindergarten to really function. Can we be in a school setting? Are we able to formulate words? Speech and language we normally see more at an elementary school, preschool type age. Whereas, things like other health impairment used to ... ADHD used to fall under that, now it doesn't as much anymore, but we see that more at the high school, middle school age, because again, the kids at a younger age have so many other things they can qualify under, but the very distinct difference is for an IEP that students will require specifically designed instruction.

With an IEP, they're also granted a case manager, which is what I used to do. Within a case manager, they only have so many kids that they keep track of every single year and make sure that they're meeting their IEP goals, they're making progress, if they need a behavioral plan or safety plans, things of that nature. I call it the go-to person. It's the parent's go-to person. Whereas a 504 plan, there's one 504 coordinator and they could have 300 kids under them. Again, the highest level of support is an IEP where you're getting a case manager. That case manager has 10 to 20 kids. That's max. Again, you're getting a lot more individualized care. Whereas, a 504 is supports to be as successful, but not as much monitoring.

Christina Cwynar: 

Thank you for that detailed description of what ... I love it because there's so much confusion between the two, what individuals qualify for? What should parents be asking for? So, it's really helpful to break it down to the nitty-gritty there. Let's move on to maybe the process of obtaining one of these IEPs or a 504 plan.

Ashley Ellis:

The process is the same. For both a 504 and an IEP, they are done with an evaluation process that the parents have to formally request. The formal request can be made by a parent. But most people don't know that it can be made by a therapist, a social worker, it can be made by a teacher. Anybody that is observing a child that thinks that there is a need for more support at a school level can put in a formal request for the child to be evaluated at the school level. The district, after this formal request is put in, has 10 school days. Parents will always say, "I put in this request and they didn't do it in time," but it's 10 school days. If you put it in, weekends don't count. If there's a missing day because of a holiday or anything like that, that doesn't count as a school day. 10 school days is a little bit different than what we think as business days or anything like that, but they have 30 school days to complete the entire process.

I also have families that'll say to me, "They're taking so long." Well, some districts will take all 30 school days and that includes their Thanksgiving break, their winter break. Those aren't considered days. Then it takes a lot longer for that process to go through. This request can be in a letter, an email, a phone call, but I always recommend to family that you send it in an email because not only do you have that paper trail, but you have a time stamp of the date and time that it was sent, so that if the district is not within that 10 days of even starting that process, or they start that process and then you have that 30 day after, then parents know when that actually started. Some parents are like, "Oh, I don't remember when it started," and you're like, "Oh." That's hard to ask them for that.

Speaker 3:

Ashley, are you saying it's 10 ... They have 10 school days to start the process and 30 to finish it?

Ashley Ellis:

It's 10 to start and then they'll do ... They'll sign paperwork, and the paperwork's different, depending if you get a 504 or an IEP, but it's pretty much saying that there's a need for this process to start, parents sign off on it that the evaluation is being approved by the parent for the school to do the evaluation, and from that signature, then it's 30 school days. It could take 40 school days to do the whole thing, and that's for both the 504 and the IEP. 504s are normally a little bit ... They do it a little bit faster because the process can be a little bit faster, but they do have all that time. Oh, so then, a 504 plan will need a letter from a doctor if it is a medical condition with the diagnosis. And this is the most important.

You're going to hear me say this over and over and over again, if you guys can put in the letter, which we'll get to, I'm sure later, the impact in which this diagnosis is having on the child at the school level, at their academic level. Because parents will say they're diagnosed, for example, with autism from the medical standpoint, but school's not seeing anything that's impacting their academics for them to then start this process. They're going to say, "No, we're not seeing this at school. We are denying your request for this," which school has the right to do. So then, parents get very upset and they say, "But we have this medical diagnosis." And we say, from school standpoint, "But we're not seeing anything." So, if you can put in it's impacting their ability to, it then gives school more data to then say this process is needed.

Christina Cwynar:

So Ashley, what happens if a parent makes a request and the school doesn't respond?

Ashley Ellis:

Oh, you're getting, okay. If the school does not respond, they can be held liable from the state level that they did not comply with your request. And then from there, I don't know if I can say that, but you can sue them. There is a lawsuit that can be done. You can file what's called an OCR complaint, and then OCR, it's the Office of Civil Rights, can look into the case to say that something has not been done in an orderly fashion, and then the school can be held liable for anything that has not been done.

Christina Cwynar:

I also know that there is advocates out there to help parents-

Ashley Ellis:

Yes.

Christina Cwynar:

... navigate these complex systems. Can you speak maybe a little bit to the advocates?

Ashley Ellis:

Yes, I can. There are a lot of resources, not just with advocates, but in general, that parents don't know about. One that I really like to use, which I use quite often in my job, when I think I know something and I want to make sure that, A, there might be documentation that can support it. Always good. We always want to bring documentation. Or they can just say over the phone, "Yes. We can say this is what you know to be true," is the State Department of Education. You can call them at any point if you have any sort of questions, and there are people that will answer the phone and answer any question that you think you have. That is one awesome resource for parents to say, "Hey. I don't really know what I don't know. Can you help me kind of navigate this?" And they can, A, send them resources or just talk them through a process. That's a great source that I, for myself in my job, use quite often.

And then, there is advocates. It's called the Arc. If you search the Arc, I use Oakland because that's ... But the Arc of Oakland County, if you search that in Google, or the Arc of Washtenaw County, or anything like that, the free advocates can come up. And there's also ones through ... Autism Alliance should have one as well for specifically ASD, but if you search advocates in Michigan, the first website that pops up is a free advocacy phone person that you can call, and that can also help resources in your area. I'm pretty sure it's the first link in Google that will go. I look this up often, guys.

Syma Khan:

Thanks so much for sharing those resources with us. One question I do have in terms of thinking about an IEP or a 504 plan is also the distinction sometimes between where a kid is going to school. Are you able to share a little bit about what's the expectations maybe in a public school, private school, a charter school?

Ashley Ellis:

Yes. Okay. Public school is state funded, so a public school is held to different standards by the Michigan Department of Education, where they have to follow, I don't know the whole what it is, but there is certain criteria that the public school has to follow in order to give kids their support. Because they're state funded, it just has to go through that way. Whereas, a charter school, a private school, and any other parochial, anything like that, they don't have to follow the same state guidelines that a public school does.

And so, I have come into instances where parents will have some children that are at public school because they need an IEP or a 504, and they've already been denied so many times in different type of settings, like the parochial or the Catholic schools or those things of those natures, because the public school has to provide an IEP or a 504 if it's requested. That process has to go through, they have to see if that child is eligible for that. Whereas a private school, unfortunately, because you're paying tuition, can say, "We do not have the resources in order to support this child here." And so, they can deny that. You're still paying though, if you choose to, to go to that school. That's a choice. Knowing that those resources might lack, where a public school is funded. The special ed department is funded by the state to give resources to children that need them. Yeah. I get that question quite often, Syma. It's hard.

Syma Khan:

It really is. And this is a complicated system, so we really appreciate you sharing about it and thinking about how we can support providers and being able to give guidance to our patients and families that are trying to access these supports. This entire season we've been talking about neurodiversity. What are some important things to advocate for within an IEP or a 504 plan for individuals with autism spectrum disorders, ADHD, or other sensory difficulties?

Ashley Ellis:

You guys are throwing me a lot of hard questions today, which I appreciate, because like Syma said, this system, I've been in it 13 years, is still hard for me to navigate sometimes. That question comes with multiple levels. I think the first thing that I try to think about when it comes to neurodivergent children is three kind of basic questions to start my process of thinking of what these children could need and how to get them resources. My first question I would ask is, how is the student doing within the school setting? And then the next question is, how is this diagnosis impacting that ability at the academic level? Is it more of a basic need? Is it like, taking a break? Or is it more in-depth, like needing a one-on-one para? And then from there, what is the goal of the student? And what is being asked from the student and the parent going to help them be successful as their same aged peers? I think that's huge.

I hear parents say to me a lot with kids with ASD or sensory issues, "I'm asking the school for these things and they just don't seem to understand," which I totally understand where the parent and the student is coming from, but I also understand that there's sometimes restrictions from school setting. So, I always come back and I ask the kid themselves, "If you need a fidget, what kind of fidget do you need?" Is that for a sensory reason or an autistic reason? Whatever that reason may be, what is the fidget you want to use and how is this going to be beneficial for you? Because the parent then, can go back to the school and say, "My autistic child needs a fidget because ..." And then if you can give the reason in more of a concrete way and kind of take that emotion out of it, which we know can sometimes be that barrier for a lot of these children.

The parents are so invested in that emotional way. Whereas, school unfortunately takes that emotion out and says, "But in a concrete way, how is this going to help them?" I think that gets the students more of what they need. And schools are more likely to listen to that conversation, where it's ... I take it back to our I statements for kids that are having emotional issues. "I feel this because ..." If you can articulate the need from the diagnosis with an actual reason, then the school's most likely going to give you what you are asking for. And I think that's across the board for a kid that's autistic, a kid that's ADHD, a kid that's any sort of neurodivergent. If you can give more valid concrete reasons, the more the school is willing to listen.

Syma Khan:

Could you give an example?

Ashley Ellis:

Yes. I can give an example. Okay. Actually, I can give an example in multiple settings. I think we think about headphones. I get this a lot with kids with ADHD, autism. I also want to preference that a lot of the time, autistic kids are very good at giving you specifics. If you ask them in a very concrete way what they need, they can give you back why they need it, so I think taking the time to really also ask your patients or who you're with, why they need that is key. I ask the kids all the time, you're telling me, example ADHD child that I just had, "I need headphones." "Okay. I can ask school for headphones, but can you tell me why?" "Well, there's a lot of noises. There's a lot of kids in my class that goof around. They don't pay attention. They're really rude to the teacher. It's a distraction to me where I'm trying to focus and I want to get good grades. I'm trying to go to college, but they're impacting my ability to focus even during lecture time."

And I said, "Great. I can write a 504 plan recommending the evaluation process for you to wear one headphone during lecture, so to cancel out some of that noise around you. Then when the lecture stops, you can put in both headphones to then cancel out more of that noise that's around you so that you can focus for yourself on the work at hand." That again, is a realistic expectation for a child with ADHD. Whereas, if I just went to a school and said, "This kid needs headphones." They're going to be like, "No, thank you. No kids are allowed to wear headphones." And that's the hard thing. But again, if we go back to those statements of why this child needs it and how it's impacting them, it's more likely to get a, "Yes, we can do that."

It's also fair to say, for a child with autism, they need to wear their noise-canceling headphones all day long. And then again, I go back to if I'm writing, we're going to get ... My letter for the school, that's what I do. We would say, "This child with ADHD needs to wear their noise-canceling headphones all day long in order to cancel out the noise because if the noise starts to become overstimulating for them, it could cause a trigger for them to start to X, Y, or Z, cry, have a behavior, have something that is going to embarrass them with their same aged peers, and so we're trying to eliminate that ..." I call it a risk sometimes ... "That risk of that happening for that child in order for them to be successful."

Again, those statements of those things, I think again, when you can spell it out more of why we're asking for these accommodations or supports for these children, the more the school is like, "Okay. We understand. That's very clear. We are getting it." I think that's the hardest thing with asking for a lot of these things. I've seen a lot of letters from a lot of different places, and they just say, "This child needs a 504." Well, schools, we know, are [inaudible 00:17:59], and so if a doctor or a parent is coming with a doctor's letter that says that versus a letter that says, "We're recommending a 504. We need these because of all of this justification." That is a lot more like, okay, it's very laid out for them. They can check their boxes. And it's less time unfortunately for them. And it's then, "Yes, they can have these." Did that answer your question?

Syma Khan:

It did.

Ashley Ellis:

Okay. With that, there is one thing, yes, Syma, I would like to speak to, that I feel like it comes back to the advocating question and being an advocate for your child or your patient or whatever that may be, and making sure that accommodations that we're asking for for children, especially our neurodivergent children, because I feel like schools have fallen into a very one size fits all for every diagnosis of things. A child with ASD automatically gets these five accommodations. To think outside the box and ask for something outside of those, schools are less likely to want to do unless there is that justification of why they need it.

A child with ADHD, they always tell me, "Well, they can take a break." Well, that's not necessarily helpful for this child with ADHD. If they're going to take a break, they might be wandering for 15 minutes. Can we take a break and have more structure to that. This child needs, with ADHD, structure is always key. Again, if you can break it down, but schools have gotten in a bad habit of putting all kids in kind of boxes and saying, these are the only accommodations that these kids get. Again, I think thinking outside that box, it really helps to have more justifications.

Speaker 3:

Ashley, how do you advise healthcare providers to support families when a school refuses or denies an assessment or if the parent is telling you, "I don't feel that the school is actually following our IEP or 504 plan."?

Ashley Ellis:

Okay, yes. This question, we get asked a lot. The support that the healthcare providers know ... Okay, so I think we start with IEPs and 504s, if they get denied initially, can always be appealed. That is the first important thing to know. Sometimes I have parents come and say, "My child has been denied an IEP for X, Y or Z," whatever the justification from school was, and I say to them, "Have we looked into a 504 plan? Because a lot of the things that you want for your child can be met within a 504 plan." I always think of it as we have our general ed student who needs no accommodations, no extra supports. The next level is kind of, your universal support, like a kid can take a break. There's always a sensory room of some sort the kids can go to. They can always go to their counselor. They can do things like that. Those are kind of your universal supports.

The next level is a 504, which is they need to see the social worker once a week because of this, or they need to take a test in another room. Those are all kind of 504. And then the highest level is an IEP, so those are kind of the structure. If a parent comes to me and says, "I've been denied an IEP for X, Y or Z," but they're asking for a child to take more than a 15-minute break between classes, or sorry, take a 15-minute break in classes, they need somebody to come and check in with them to make sure they're doing their homework and organizational stuff because they have ADHD and they're forgetting to do their homework all the time. All of those could fall under a 504, so you're asking for an IEP, which is the highest level of care that a school level can offer, but that again, needs specific instruction. The child, to me, does not need necessarily specific instruction differentiated. They need just modifications to their day, which a 504 can hold.

So then, I would say to that parent and the provider, we need to write a letter for a 504 plan evaluation, so that what they're asking could be met at that level of intervention versus the highest level of intervention, which if you appealed that, they most likely would find that ineligible again. But at the 504 level, they would find that, I can't say a hundred percent eligible, but highly likely they would find that again, eligible if you gave again, justifications of how that's impacting them at school. Providers can also help with very clear, we have been talking about this whole episode, very clear letters, so that entails a diagnosis. Some parents will kick back on that though and say, "I don't want a school to know a diagnosis." And then, I always have that conversation with parents. I get it. I understand that sometimes we have negative stereotypes of a child that has a diagnosis, and I totally can empathize with families. I worked in a high school where all of my kids ... I was in a special ed resource room, and so all the kids in my room were diagnosed with something.

I would have kids though all the time be like, "How do I get in your classroom? This is so cool." I'd be like, "Well, we have to be diagnosed," so I think the stereotype in today's day and age is less and less and less because you really don't know anymore who has intervention plans or who's on IEPs. Most of my kids were in sports or on the robotics team or were functioning normal in a general ed setting all day long. They just needed those extra supports. I think if you can explain that to parents, which I do, they're more likely to be like, "Okay, the diagnosis is okay then." And then from there, giving those justifications of how their diagnosis is impacting, which providers, nurse practitioners, social workers, can ask the child, which is key.

If you can go back to the child every time and ask the kid, "What is stressing you out at school and how can we help?" If you can get their voice in it and then go and write the letter, and according to Ashley Ellis, "She said that her stresses are these, and it's impacting their ability at this level," the more the school can see that the child is also trying to advocate for themselves through you as the providers, social workers, nurse, everybody. If you can see that child's voice in that, again, the school I feel like takes that more seriously sometimes than a parent coming in saying, "My child needs this." And they're like, "Okay, but your kids never come and seen anybody," so they're going to say, "We want to talk to your child," but if your child's voice is in that or your patient's voice is in that, then it sees that this kid really does need help.

And that's how on our unit we help bridge that gap is we as the learning specialist or teachers will ask the kid, "Why are we struggling? What are the stressors?" And then help have those conversations with school, but with that kid's voice. Majority of the time, the school will work with us in getting those extra supports, but then, we still put it in documentation. Documentation is huge. Schools will quote unquote, lose things all the time, so if you have it in an email or a documentation form that you've given it to school, then again, we have to follow through with that.

Christina Cwynar:

Remembering schools have a lot of students, they want to disperse-

Ashley Ellis:

Yes.

Christina Cwynar:

... resources to those who truly need those resources. Allowing them to understand how to disperse their limited-

Ashley Ellis:

Yes.

Christina Cwynar:

... resources is really important. And I just wanted to comment on something else you said, Ashley, is that worry around schools knowing diagnoses-

Ashley Ellis:

Yes.

Christina Cwynar:

... that a kid may struggle with, and the real intention behind that is the school being able to support a child in whatever they're experiencing in life and those challenges. And thinking about the IEPs, 504s that I've seen from a college level, from a faculty level, when I get those emails and that documentation that one of my students needs X, Y, and Z to be successful in my class, it doesn't give me the details of their diagnosis. It says they have met the qualifications for this. You need to provide as faculty X, Y, and Z. That's all I know as a faculty. I don't know if it's medical, I don't know if it's psychiatric, I don't know all of these details. And there's varying levels in different universities or schools do different things I'm sure, but I don't need to know that information to help a student be successful.

Ashley Ellis:

When the IEP or 504 is passed on in order to initially qualify them, so to get them initial resources, they have to have something to qualify them. If a diagnosis isn't in there, what are they basing this on? That's where the start of it is. You're like, "So here's our start." If the child already has an IEP or a 504, I can add accommodations with not needing a diagnosis because the child's already been found eligible for that, so I can just add accommodations and justify that. That's really a lot easier than the initial 504 or IEP, and I do get schools that are like, "Can you give me again de-" ... again, the details, we always say, are need to know. You don't need to know unless it's going to harm themselves at school or the school's at a risk. Because the child does X, Y, or Z, you don't need to know all the details. You just need to know that here's the diagnosis. I can give you the definition, and then why these supports are helpful.

Speaker 4:

And I was more, I guess, alluding to there is likely only certain people in the school who know more of the details of what's going on than all the staff.

Ashley Ellis:

Oh, yes.

Christina Cwynar:

The rest of the staff just knows how they need to support that child where the people who need to know for approving things and putting these interventions into place know a little bit more of the details.

Ashley Ellis:

And that's actually a very good thing to bring up. As these children are getting qualified or being found eligible, everybody that is in communication or teachers or anything like that is all held accountable to the same standard. Those are state and federal documents. If I'm the math teacher in a class and Ashley comes in and she has a 504 for whatever reason, again, the teacher doesn't need to know. That's not, unless again, she's going to harm herself in class. And then, that's a need to know for that teacher to be very aware. But normally, that child would then have a safety plan, which you can add in a 504 and an IEP.

It doesn't need to have an IEP to have a safety plan, but then that teacher can be held liable if she's not following any of these things. That is where sometimes, again, these tricky things. A lot of kids, schools are doing the best they can. Do not get me wrong. I want to preference. Their schools are really, they're doing great. I appreciate them working with us all the time, but they do also have these kids to take care of. They're going back to school. That is how we can best support them, is by giving them as much data as we can so that they can also give as much support as they possibly can to the kid when they return to school.

Christina Cwynar:

They want them thriving in life, too.

Ashley Ellis:

Oh, yes. Yes, they do.

Christina Cwynar:

So Ashley, let's do an example before we wrap up for the day. Let's say we have a school age child, let's say 10 years old, who has autism spectrum disorder, who is verbal, and they don't have an IEP or 504 yet. What are some of the things that you would help parents or providers or direct them to ask for in that process?

Ashley Ellis:

Just because I call them students, sorry, all the time. This other students. Just because a student has a medical diagnosis for ASD does not mean that a school is going to find them eligible just because they're medically diagnosed ASD. I get this question all the time. We have this medical diagnosis, they're getting no support at school. Let's just make that, so the school has to find them eligible for ASD under very drastically different criteria than the medical criteria. This is the back and forth that we get all the time. I will say that it does help with getting a diagnosis of ASD at the school because they see that there's a, I don't want to say a pattern, I don't know the right word to use, but there's already a diagnosis there for ASD. From that standpoint, the medical professionals have already said, "This child has ASD." So then the school can't say, "Well, we've never seen it." Somebody's already observed this saying that there is a diagnosis there.

From there, the parent can say, "We would like to request an IEP evaluation," and they can say ASD. And again, that letter from the medical professionals can say, "Here's our data. Here's why we saw this. Here's why we diagnosed them with ASD." And again, that can help, and they will put that in their evaluation of observations from outside sources, so that'll help. That's the first thing. If you have a medical diagnosis, it will help, but it doesn't guarantee a child to get an IEP or a 504. So then, the next question the school may ask or the parents want to provide is the behaviors that are impacting them at school. I get a lot, potentially this 10-year-old, verbal, ASD kid, acting out at home, having a lot of trouble at home, not being able to function on a daily basis at home, but then goes to school and is participating, is listening, is making eye contact, is doing all the things, but maybe having some outbursts here and there or doing things that are off or a little bit odd.

The school is not seeing probably enough for them to then say, "This child is going to be diagnosed at a school level of ASD," and so they may deny you and say, "No, we're not going to find this child eligible." And then a parent will come back and say, "But they're diagnosed with," and again, that fight back and forth. Again, I think from a parent standpoint, for this boy as an example, of a 10-year-old can say, "I have the documentation from this medical, the letter giving very concrete things that this child may need." Do they need headphones? Do they need a break? Do they need one-on-one instruction for 10 minutes a day because they really need to focus more on their reading. What is this child and this parent really looking for from that ASD diagnosis, from the school level to get more supports for them to be more successful.

If you can lay that out as a parent in more concrete bullet points, and then have the justification, again with that documentation from the medical team, that again gives the school more evidence that it's there even if they're not quote unquote, seeing that at school. I think that's the most helpful way a parent can advocate for their child, especially a 10-year-old. You can also ask the 10-year-old, "Hey, what's going on at school? What are you really struggling with? What's your trigger? What's going on?" And they may say, "Hey, this kid's tapping their pencil next to me all the time and it's setting me off." And so, then you can take that and say, "Really sensitive to sound. Can we X, Y or Z?"

Syma Khan:

We talked about the concept of masking in another episode. I think it also maybe speaks to sometimes that these youth maybe are able to keep it together in some capacity or they're able to get through the school day, but then when they go home, there's almost this emotional release that occurs. There's that interplay between maybe the school environment needing to be adapted to help support the youth because they may already feel safe at school and they don't feel the need to constantly be masking their symptoms, actively engaging to avoid a stimulus that's causing them distress or they reach that tipping point where they're not able to any longer manage those really distressing emotions. At home, they feel safe to maybe have that explosion because now they're like, "Oh my God, I can finally communicate all the distress I've been keeping to myself for eight hours during the school day." I think that communicating to the school then of maybe how the behaviors of the parents seeing at home are a result of maybe some of the things that are stressful at school, too.

Ashley Ellis:

And I think that's a great point, Syma. I think that if, again, you can relate it back to how this is impacting a child as a whole. And then, I would say to the parent, "I probably am going to ask for a 504 at this point," because again, it's broader. It can encompass, is that the word? Okay, so it can encompass the need for maybe a child taking breaks at school because when they get home, they're overstimulated. They have so much that they've held in all day. Maybe they need time to be able to talk with a social worker at school and have, especially a 10-year-old, a sensory break. They need to be able to play with Play-Doh. They need just, downtime. Maybe they need two of those during the day.

504s are great for that because you can bridge that gap between sometimes what I feel like parents really want. They want all the support, but sometimes school, again is not seeing that, but that's a great way to bridge that gap of breaking up their day into more, I want to say realistic expectations for both the parent and the school to be successful for this kid to get what they actually need. And then from there, you'll see a lot more success because I feel like it evens the playing ground for all parties involved, but then the child, I feel like at that level is like, "Okay, I can be successful. Okay, this is helping." So then, maybe you'd see less explosions at home or you're seeing more success at school. And then from there, this is also a great point, so asterisk sidebar, that schools then will sometimes say, "They're being successful. We don't need it."

I really deter parents from saying, "Yes, they don't need it anymore because we don't know when life is going to change and throw us whatever it's going to throw us." And then all of a sudden, this child that had an IEP or a 504 no longer has it and starts to become distressed in whatever way that is. You go to high school, you're 10. Now you've let go of this, but now you're in a high school with assemblies and lots more people, and all of a sudden these triggers start to come back, and then you have to start this process all over again. They don't just pick it up and revise it. You have to go through that whole process again. I really deter parents when schools are like, "They're great," and you're like, "Yes, they're great, but we're going to keep these here." I really advocate that parents fight for that, that they keep those supports in place because again, we don't know when life's going to change for these kids.

Speaker 4:

One of the things that you said that really hit home with me was that you may have this medical diagnosis of ASD, but you don't have a school diagnosis of ASD. And I think that speaks to how schools conceptualize kids functioning within the context of IEPs and 504s. They might be able to see that a kid has autism and is struggling with certain things, but is it impacting their success in the classroom? And that's where I think we can be helpful as healthcare providers and directing families of how is this impairing your child or causing more challenges for your child in the classroom? They may not deny that, yes, this child, this individual has autism, but under these criteria for the 504, the IEP, we're not seeing the impairment on their functioning in this environment. Is that kind of what I'm understanding here?

Ashley Ellis:

Yes. I think that's exactly the biggest thing. And again, if parents can go and have an advocate, if you have these letters that are very laid out, and I know that takes more time for healthcare providers, and I get that, and I always think in the back of my mind, if this child can be successful at school, that willingness to take 10 more minutes to write a really thought-out letter, to give that school criteria to be like, "Okay, they do need supports. I can see it now." That's going to impact that child's life. That could be the tipping point of this child really being successful or really falling behind. Those advocacy groups, also, there's free ones that can go with you to those meetings that know what they know, and they can help be like, "No, no. We have this letter. Here's the criteria. We are ... " And they're a little more pushy, I think, sometimes than parents can be. I think that sometimes that pushiness, too, of like, "Nope." We are, and again, I get that schools are doing the best that they can, but sometimes I think once you have more of a pushiness to it, the kids are getting what they need.

Syma Khan:

And I think that's an important kind of place to also think about the role of the healthcare provider. There's a role for you to advocate through providing documentation letters, but then also knowing the resources to connect a family to that advocacy group that can take it to that next step, if a family is still struggling in your office and saying, "Hey, we're just, we're not getting anywhere with school. What else do we need to do? What else can you do to help support us?" Because I think families come to the healthcare system with a lot of challenging experiences, and so we want to provide them all we can to hopefully be successful.

Well, thank you for joining us today. We truly appreciate your time and expertise. A very profound thank you to everybody that made this season possible, including Joe Hallissey and his team, the CME office, Miles Borders, and all the wonderful speakers who volunteered their time. Thank you to everyone that tuned in this week. Nurses, social workers, and physicians can claim CMEs and CEs at uofmhealth.org/breakingdownmentalhealth. You're able to do this anytime within three years of the initial air date. We hope that you will join us next time.