Educational Advocacy: Supporting Your Medically Complex Child

Podcast Transcript

Speaker 3:

Welcome to Little Health, a Cleveland Clinic Children's podcast that helps navigate the complexities of child health one chapter at a time. In each session, we'll explore a specific area of pediatric care and feature a new host with specialized expertise. We'll address parental concerns, answer questions, and offer guidance on raising healthy, happy children. Now, here's today's host.

Dr. Mayme Marshall:

Welcome back to Little Health. I'm your host, Dr. Mayme Marshall, a pediatric cardiologist at Cleveland Clinic Children's, and the director of Patient Family Experience For the division of Cardiology and Cardiovascular medicine. Every child deserves access to quality education, but for children with congenital heart disorders or other complex medical needs, this can require extra planning and advocacy. Today, as part of our season on pediatric cardiology, we're discussing how to support and empower your child to reach their full potential at school. Our guests today are Michelle Hughes, an educational advocate at Cleveland Clinic Children's.

Michelle Hughes:

Hello everyone.

Dr. Mayme Marshall:

And Natalie James, a Cleveland Clinic Children's Healthcare partner. Welcome back, Natalie.

Natalie James:

Hi there. Happy to be here.

Dr. Mayme Marshall:

And Michelle, welcome to Little Health.

Michelle Hughes:

Thank you. So first and foremost, I just wanted, um, to extend deep gratitude to you, Dr. Marshall, for inviting me as a guest today. Um, and for our listeners, I am Michelle Hughes, and I currently serve as program manager and educational advocate for the neurodevelopmental support program at Cleveland Clinic Children's, which includes a cardiac program. So in this role, I work closely with clinicians, families, and schools to bridge the gap between healthcare and education, ensuring children at increased risk for neurodevelopmental impairments get the specialized care and educational support they need to thrive from infancy through young adulthood. So my career in education, um, started first as a teacher, um, and then later as a school leader.

And over the years, I have just gained very deep knowledge about educational systems, um, navigating, uh, special education regulations and, um, the, the diverse learning needs of students. Um, but it is important to note that my professional journey did take a personal turn about two years ago when I had a second child, my daughter, who was born with a chronic, um, medical condition. And so that experience has fueled, um, my passion for advocating for supportive educational environments for children, um, with complex medical needs.

Dr. Mayme Marshall:

Awesome. For our series on cardiology, we are teaming up with our healthcare partners. This group offers a team approach, including medical providers, parents and patients that analyze and advocate for a better healthcare experience. We welcome our healthcare partner today, Natalie James.

Natalie James:

Um, so my name's Natalie James. Um, I am a parent of a three-year-old, uh, as well as a kindergartner, a six-year-old kindergartner who's gonna be in first grade soon. So we're very excited about that. Um, I also work in education myself. Um, I've been in education for 16 years, um, most of which has been with teaching. I have been an assistant principal for a few years as well. Um, so I'm excited to, uh, really relay education and what's available out there for parents who are concerned about their child.

Dr. Mayme Marshall:

So we have two powerhouse ladies who have such rich experience in education and have personal mama bear experience of advocating for their little ones.

Natalie James:

For sure. Definitely mama bear. Yes (laughs).

Dr. Mayme Marshall:

So we have so much wisdom to share. I'm excited. Let's jump in.

Natalie James:

Alright, Michelle. So, special education services, um, you know, I'm constantly seeing on my parent groups, um, you know, a lot about what is available for my child. I really see them struggling in school, um, both, you know, medically as well as, you know, perhaps academically. Um, so they're really wanting to know what is available for them and what is the difference between all of these different plans. You know, IEPs, 504s, all of it can be so confusing. Um, so if you could share for our listeners a little bit about that.

Michelle Hughes:

So that's a really great question, and I completely understand how confusing it can be for parents, um, navigating these plans for the first time. So I think it's important to provide definitions for, you know, an IEP and a 504.

Natalie James:

Yeah.

Michelle Hughes:

So an IEP stands for an individualized education program, and this is a plan for children with disabilities that provides specialized instruction. And so that word, that phrase, is very important to understanding the difference between the two plans. So an IEP is going to provide specialized instruction tailored to your child's unique learning needs. And so this is often used for children who require significant support in the classroom. And it's based on federal special education law under IDEA. Um, and that stands for the Individuals with Disabilities Education Act. And so the key here is that an IEP offers specially designed instruction, meaning the way that the child is taught or the curriculum may be adjusted to help them succeed. Um, it also can include related services like speech therapy, occupational therapy, physical therapy, um, if needed. Um, then on the other hand, you have the 504 plan, uh, which comes from section 504 of the Rehabilitation Act.

And this is for children with disabilities who don't really need that specially designed instruction, but they still need some accommodations to fully access the general education curriculum. So these accommodations can include, you know, things like extended time on tests, um, seating arrangements, home instruction for a prolonged hospitalization, um, but they don't involve changing, um, how the material or the curriculum is taught. So a 504 plan is often for children who have physical or mental impairments, um, that limit major life activities like learning, but it's less about changing the teaching approach and more about just like, removing the barriers.

Natalie James:

Mm-hmm. And both are very supportive, you know, and both le- both are legally binding documents, um, you know, that are enforced within public schools. Does every heart warrior need one of these? Like, do you think every heart warrior should be getting something like this?

Michelle Hughes:

That's a really good question, and I think the answer can vary, um, based on, you know, each family's unique needs. I deal with a lot of families that don't necessarily feel comfortable sharing all of the medical information, all of the medical interventions their child, um, has been through with this school team. And so in that case, you know, it's really at the discretion of the family. But from a professional lens, it's important to realize that when your child is at school, the school is responsible for their safety, their security, and their health. And in order for them to do that, um, in a dutiful manner, it's important that they understand, you know, your child's medical needs. So whether it is related to a heart condition, whether there's a recovery from a surgical procedure or any other health condition like, um, diabetes, uh, it is important to ensure that the school can provide the right support and accommodations for your child's safety and most importantly, their academic success. So this could include things like monitoring for fatigue, providing rest breaks, or making sure that your child has access to medications if needed.

Dr. Mayme Marshall:

I'm not an education person, so let me make sure I'm getting this.

Michelle Hughes:

(laughs)

Dr. Mayme Marshall:

So an IEP is if the child needs some additional accommodations or has some learning differences that requires some extra support-

Michelle Hughes:

Mm-hmm.

Dr. Mayme Marshall:

... versus-

Natalie James:

Or behavioral as well.

Dr. Mayme Marshall:

Or behavior.

Natalie James:

Or behavioral.

Dr. Mayme Marshall:

Okay. And a 504 is really like that, any kid that has a medical diagnosis should probably have a 504, like if they need a medication at school or if there could be some sort of emergency that would happen within the walls of the school-

Michelle Hughes:

Most definitely.

Dr. Mayme Marshall:

They should have a 504 in place.

Michelle Hughes:

Yes. So it's really thinking about that 504 plan as also a school health plan. So in case of emergency, this is what the school should do. And so in that regard, you really need the family's input-

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

... um, with defining that plan. So are we calling the parent or are we calling the cardiologist first to get direction about, you know, how we should respond to a situation? And so with the IEP, I wanna go back to that term of specially designed instruction-

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

... um, so when that child requires, um, modifications to how the content is taught, that is when we are going to go for an IEP versus a 504.

Dr. Mayme Marshall:

Okay.

Michelle Hughes:

It's also important-

Dr. Mayme Marshall:

And it's either or?

Michelle Hughes:

It's either. That's what I was going to say.

Dr. Mayme Marshall:

Ah, sorry (laughs).

Michelle Hughes:

It's either or. Um, sometimes families think, "Oh, I need both."

Dr. Mayme Marshall:

Yeah, you know-

Michelle Hughes:

I need to have an IEP and a 504.

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

No, you don't. An IEP is going to cover all of the, the parameters that are provided in a 504. So if you have an IEP, you can include a school health plan in your IEP.

Natalie James:

Mm-hmm. Yes.

Michelle Hughes:

Um, you can include direction about how to handle, um, an emergency situation. You can include, um, medications that that child is taking, whether they're, you know, during the school day or, you know, before or after the school day. Um, and then also with that 504 plan, you can include all of that information, but it's really thinking about how are we going to remove the barriers that are related to that child's disabilities so that they can have, you know, as close to a normal or typical, um, school experience.

Natalie James:

Mm-hmm. Yeah. And I like to, I like to really think about, you know, an IEP is for the brain academically and the body behaviorally.

Michelle Hughes:

I love that.

Natalie James:

A 504 is for medical, supporting a medical part of that child.

Michelle Hughes:

Yes. Okay.

Natalie James:

Um, so that's kind of like the way I summarize it in my head, and-

Michelle Hughes:

It's a great way to summarize it.

Natalie James:

You know, I used to say it to parents, so.

Dr. Mayme Marshall:

Just hearing you talk about it, I feel a little bit overwhelmed, like going about-

Natalie James:

It is. It's overwhelming.

Dr. Mayme Marshall:

... getting this whole document.

Natalie James:

Mm-hmm.

Dr. Mayme Marshall:

Like a legal document put together. So how do families, like what support exists out there so families can create this, you know, illustrative document that has all of the details to help their child?

Michelle Hughes:

So it's important to recognize when you're creating, um, an IEP or a 504 plan, you're not doing it in isolation.

Natalie James:

Mm-hmm.

Michelle Hughes:

It is a collaborative process that includes the family and necessary, um, school team members. So that could be the child's classroom teacher, it could be their school counselor. Um, it could be the occupational therapist that is providing them, um, support with fine motor skills. It can include, you know, someone from their healthcare team. Very often in my role as an educational advocate, I accompany families to IEP 504 meetings to represent our, um, medical team and their perspective on what we think is best for the child, um, educationally. And it's also important to note that there is some ideology that, you know, healthcare and school are two separate entities. And we're really trying to combat that to help our school teams understand that when we're talking about neuro development, we're talking about an impact on the brain has occurred.

Natalie James:

Mm-hmm.

Michelle Hughes:

And so if an impact on the brain has occurred, it is going to impact a child's learning experience. And so we just need to be prepared to deal with that so that that child has the resources in place so they can thrive.

Natalie James:

Yeah. And it's, it's really important for parents to recognize as well, is that you are a part of that team. You know, like you have a voice, you can have an opinion, you know, you are a part of that team that's making these decisions about your child. Because so often, you know, in education, the parents don't always feel, I guess like qualified or whatnot to like voice their opinions, but in education, we want that.

Michelle Hughes:

Mm-hmm.

Natalie James:

Like, we actually want you to be an involved piece of this team that's supporting your child. Um, so-

Michelle Hughes:

And I think another component too is-

Natalie James:

Mm-hmm.

Michelle Hughes:

... um, it can be overwhelming, uh-

Natalie James:

Yeah.

Michelle Hughes:

... for a parent to go to, um, you know, a school meeting for an IEP or a 504. Sometimes it's just one parent because the other parent has to work.

Natalie James:

Mm-hmm. Mm-hmm.

Michelle Hughes:

And you have six or seven, you know, school team members that are sitting across from you and they're using language that is not familiar to you.

Natalie James:

Yeah.

Michelle Hughes:

Um, and then we're talking about, you know, children with disabilities. There's been a journey for that child and that parent together to get to this point-

Natalie James:

Mm-hmm.

Michelle Hughes:

... of being in school. And so it's an emotional process as well.

Natalie James:

Mm-hmm.

Michelle Hughes:

And so in that regard, my best advice to families is to thoroughly prepare before going into the meeting. Um, really think about how you want to strategically tell the story of your child, um, in a very succinct way. Um, because we want that to be captured somewhere in that 5 0 4 plan or that IEP, because this really is the driver for why all these team members are sitting at the table. Um, and then from there, you know, be ready with data, you know, that you can share that maybe you've, um, received from your medical team, whether it's, you know, in our clinic, uh, we very often, uh, have neuropsychological evaluations. And so we want to share, you know, information, um, in those neuropsych evals with the school team because it can help them understand, you know, what is going on with that child at a deeper level cognitively, um, social emotionally. Um, and so when that parent is going into that meeting prepared with those documents, it takes a little bit anxiety out of the process.

Natalie James:

Mm-hmm. And I mean, prepared with even basic stuff, you know, like how long it takes your child to do homework each night.

Michelle Hughes:

Yes.

Natalie James:

And if you, you have a crying screaming match when they're doing homework every single night, you know, like just data regards to your life surrounding around what's happening at school. So anything that they're doing in education that you can witness, you know, is, is something that you should bring to the table.

Michelle Hughes:

For sure.

Dr. Mayme Marshall:

I love how you highlighted, like telling the child's story.

Natalie James:

Mm-hmm.

Michelle Hughes:

Mm-hmm.

Dr. Mayme Marshall:

And I think it's so important in all aspects of care, like in a medical care-

Michelle Hughes:

Mm-hmm.

Dr. Mayme Marshall:

I think that, uh, that narrative story, really getting to know the person, the child, what they love is so powerful. And so I love hearing that it's equally powerful in an education standpoint. And I think-

Michelle Hughes:

Oh, for sure.

Dr. Mayme Marshall:

You know, in medicine we're getting better and better about taking complex medical conditions and helping kids live happy, happy, healthy long lives.

Michelle Hughes:

Mm-hmm.

Dr. Mayme Marshall:

And now our challenge is to make sure that they have high quality of life.

Michelle Hughes:

Yes.

Dr. Mayme Marshall:

And, um, school is such a huge part of that.

Michelle Hughes:

Yes, it is.

Dr. Mayme Marshall:

Um, that's their, spend the majority of their time. So if it's something that we can make their quality of education (laughs)-

Natalie James:

Mm-hmm.

Michelle Hughes:

Yes.

Dr. Mayme Marshall:

... letter, it's like such a powerful improvement for sure to their overall life and confidence. And-

Michelle Hughes:

For sure.

Natalie James:

Yeah. It's definitely.

Michelle Hughes:

For sure.

Dr. Mayme Marshall:

That's wonderful.

Natalie James:

Alright. So, you know, say I'm a brand new parent, which I do have a child in kindergarten, my son already has an IEP for, you know, occupational therapy and speech and so forth. Um, but say I was a new parent, you know, and I'm feeling very overwhelmed. Who should I contact first to begin this whole process?

Michelle Hughes:

So that's a really good question. And, um, I think the best place to start is to contact the school and request a meeting, uh, with the school team. Um, and so let's say a child is entering kindergarten, they have not, you know, started school, um, but they have a chronic medical condition that we know is most likely going to impact their educational experience. You know, try reaching out to that school team in May, June, uh, the summer months to just let them know like, "Hey, this is going on. And I really think we should, you know, develop a plan."

At that point, you probably wanna start with a 504 plan if there isn't, you know, any data regarding, you know, a need for specially designed instruction. And then utilize that 504 plan, uh, to help the school team know, you know, these are the necessary accommodations, whether it's, you know, having access to the bathroom or if there's medications that may need to be taken during the school day. You definitely wanna initiate that conversation before they start school. If it's a child who is already in school and there is a discovery of, you know, some struggle academically-

Natalie James:

Mm-hmm.

Michelle Hughes:

My best advice is to initiate the conversation with the classroom teacher as soon as possible. It's not something you wanna wait on. In our work, on the healthcare side, we really lean into strategic surveillance. Um, when we see that there's an issue with the child, we want to, you know, diagnose this, uh, treat it and, you know, look at how the results, uh, you know, land. And then, you know, we go through that iterative process if we don't, you know, find a successful intervention. And so we wanna utilize that same, you know, process in the school setting. So as a parent, you are your child's most important advocate. I cannot emphasize that enough.

Natalie James:

Same.

Michelle Hughes:

So when your child is struggling, elevate the, the concern to the classroom teacher. If you feel like you're not getting any true support interventions or effective, um, supports interventions, you can always escalate the conversation to the building principal or a school counselor. And after that point, you feel like there still isn't, um, an action plan that is supportive, that's when I would recommend you, um, request an official evaluation, um, for special education, um, services. And so, um, whenever you're requesting that, I always advise families to do that in writing. It's best to send an email.

Natalie James:

Mm-hmm.

Michelle Hughes:

Um, and on that email you want to include the school principal, you want to include the district director of special education or the coordinator of special education. Um, and always that classroom teacher, because that classroom teacher is spending the most time with their child. They are going to know who your child is in the school setting, um, as best as anyone in the, in the, um, building.

Dr. Mayme Marshall:

I think something that you brought up that I find really interesting is just the idea of advocating for yourself.

Michelle Hughes:

Mm-hmm.

Dr. Mayme Marshall:

And I see it a lot on the medical side of things, like when you have a family that's inpatient and maybe they're not satisfied with their care for whatever reason.

Michelle Hughes:

Mm-hmm.

Dr. Mayme Marshall:

Sometimes it's something really minor-

Michelle Hughes:

Yeah.

Natalie James:

Yeah.

Dr. Mayme Marshall:

... that we can make an impact. But a lot of times families will express that they're scared, they're worried about-

Michelle Hughes:

Mm-hmm.

Dr. Mayme Marshall:

... raising their voice or expressing that they're not incredibly grateful for the care that we're providing.

Michelle Hughes:

Yeah.

Dr. Mayme Marshall:

Because they're afraid it's gonna come back at them.

Michelle Hughes:

Mm-hmm.

Dr. Mayme Marshall:

That the medical team might be upset with them and not treat their child as well.

Michelle Hughes:

Mm-hmm.

Dr. Mayme Marshall:

I can imagine it would be the same pause from a school where families are scared to advocate for their child 'cause they're afraid that they're gonna be treated differently.

Michelle Hughes:

Mm-hmm.

Dr. Mayme Marshall:

Like, what is your advice for families with that kind of internal fear?

Michelle Hughes:

Mm-hmm.

Dr. Mayme Marshall:

Like, how can we encourage them with advocating for their families?

Michelle Hughes:

So I think it's important to recognize on the school side, no one goes into education that does not want to support kids.

Dr. Mayme Marshall:

Yeah. It's a calling, right?

Michelle Hughes:

Yes. It is a calling.

Natalie James:

It most definitely is. Yeah.

Dr. Mayme Marshall:

(laughs)

Michelle Hughes:

And, um, everyone on that side is committed, devoted to, you know, helping that child thrive just like we are on the healthcare side.

Natalie James:

Mm-hmm.

Michelle Hughes:

Um, and so with that, you know, there has to be, um, you know, engagement between the parent and the school. And so, you know, when issues come up because they are going to come up, um, we, we need to, you know, utilize, um, effective communication strategies. You know, we wanna be kind, uh, we wanna, you know, definitely try to get, you know, our message across in a way that it is received. And then, you know, also just engage and you know, that, that, um, that feedback loop.

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

Uh, the school cannot improve, um, instruction for your child if they don't know what the issues are.

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

And you know, on both sides, you are spending probably eight hours a day with your child and they're spending it another eight hours a day with your child.

Dr. Mayme Marshall:

Right. Mm-hmm.

Michelle Hughes:

And so if we're not engaging in those conversations, uh, we can, we cannot resolve the issue. And so I always lean into that just knowing that all of the people that are working in this school want to see each and every child, you know, do well. Another, uh, point that I lean into is the squeaky wheel always gets the oil.

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

So, um, if there is hesitation to advocate for your child as a former school leader, I can assure you that that is not the mentality. No one's going to retaliate against your child or look at you-

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

... um, in a different light. If anything, we are going to understand because we are humans, we are people. We have children. Um, and so we are going to understand and we are going to listen to you and, and we are going to try to support you to, you know, find a resolution.

Dr. Mayme Marshall:

Yeah. I think that's really powerful advice for all phases of your life, but particularly with the healthcare and education, and you're not, uh, calling your teacher to the proverbial principal's office.

Michelle Hughes:

(laughs)

Natalie James:

Yeah.

Dr. Mayme Marshall:

You're not gonna get in trouble if you're not satisfied.

Michelle Hughes:

Yeah.

Dr. Mayme Marshall:

Um, but it's, you know, really powerful and important, uh, to make sure that you're raising your voice. Is it, so like-

Natalie James:

Yeah.

Michelle Hughes:

But it's a skill too.

Dr. Mayme Marshall:

Absolutely. Yeah.

Michelle Hughes:

You know? It's something you, you have to grow into. And for many of us that, you know, have children with-

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

... um, chronic medical conditions, you know, we, we've never had to do this before.

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

And so in that regard, you know, it gets easier the more you do it and the more you see that people just wanna help and support you. Um, so, you know, my best advice is, you know, just kind of lean into that fear, but push through it.

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

Um, and, and know most importantly, that child has you as a mom or a father, and you are their greatest advocate. And they're never going to get what they need if you do not learn how to use your voice.

Dr. Mayme Marshall:

Yeah.

Natalie James:

Yeah. And, and definitely lean into the teacher, like use that classroom teacher as a little bit of a gateway, because really, I mean, they see that child for so many hours a day too.

Michelle Hughes:

Mm-hmm.

Natalie James:

And you could even just have a simple conversation with them before escalating it anywhere and just say, "Hey, I'm just concerned about my child." And-

Michelle Hughes:

Mm-hmm.

Natalie James:

You know, they'll share if they have concerns.

Michelle Hughes:

Mm-hmm.

Natalie James:

The teacher will share if they have concerns. Um, so I think it's definitely better to contact the teacher when in doubt.

Michelle Hughes:

For sure.

Dr. Mayme Marshall:

Yeah. So teach me this.

Natalie James:

Mm-hmm.

Dr. Mayme Marshall:

How is it different if you're at a private school versus public or a charter school, parochial schools? Like, I know that there's a vast difference of what this would mean or what support they might provide your child. So gimme the down low (laughs).

Michelle Hughes:

That is a great question.

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

Um, so I will start with a term called Free and Appropriate Public Education.

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

We call it FAPE. And so FAPE is mandated to be provided in a public school setting. In a private school setting, they are not mandated to provide FAPE. So specifically with public schools, um, public schools are legally required to provide special education services under, um, we're gonna use that term IDA again, and that stands for the Individuals With Disabilities Education Act. So if a child qualifies for an IEP, the school must provide, the public school must provide specialized instruction, accommodations and related services at no cost to the family. And then the same is for charter schools. So charter schools are considered public schools as well. And so they are, you know, mandated to follow IDA as well, but it just may look differently. They operate, um, independently.

And so the services they provide may look different than, you know, a traditional public school. Now, when we talk about, you know, private schools and parochial schools, um, they are not required to follow IDA, and they are not obligated to provide IEPs. And so in Ohio, it is important to know that we have many options of different types of schools. And then we also have, um, scholarship programs that are available to children that have disabilities. And so the two key scholarships that we have in Ohio are the Jon Peterson Special Needs Scholarship. And so this provides, uh, funding for students with an IEP to receive services at participating private schools or providers. But it's also important to note that private school, that parochial school, even though they're receiving

Natalie James:

Mm-hmm.

Michelle Hughes:

... that scholarship money, they are not required to provide FAPE. The second type of scholarship we have is the autism scholarship. And so this scholarship helps families of children with autism specifically to access approved educational services outside of the public school system. But with this scholarship, once again, that private school can accept that scholarship money, but they are not required to provide FAPE. So if your child needs occupational therapy, if they need private therapy, the burden becomes on the family, uh, versus in the public school setting, they have to provide all of those related services at no cost to you. And so it's very important when families are trying to choose the best school placement for their, their child, to really ask questions about what services can you provide? Here are my child's needs. Once again, we want to be as transparent as we possibly can.

Natalie James:

Mm-hmm.

Michelle Hughes:

Here are my child's needs. And are you able to, you know, support them in this way? What will support look like? What will the frequency of the support be? Um, really asking those hard questions so that you get, um, the best information to make the best decision for your child.

Natalie James:

Yeah. And it's, it's important to note, you know, a lot of private and parochial schools, they do have intervention specialists. They do have occupational therapists and physical therapists and so forth, but it just may look different-

Michelle Hughes:

Mm-hmm.

Natalie James:

... as well. Um, so most of them do provide them, but it's very, very important that you advocate and that you ask if you are a parent of a child with needs.

Michelle Hughes:

Mm-hmm.

Dr. Mayme Marshall:

What services or support do you offer families that their kids are not quite school-aged? So if they're preschool-

Michelle Hughes:

Oh, this is my favorite thing to talk about (laughs).

Dr. Mayme Marshall:

... or school readiness, like what, how can you support those families who are, school is in the future like Natalie's little three-year-old-

Michelle Hughes:

Mm-hmm.

Natalie James:

Mm-hmm.

Dr. Mayme Marshall:

... uh, but not quite there?

Michelle Hughes:

So, um, this is a topic that I'm very passionate about. Early intervention is very crucial, especially when we're talking about children that have disabilities. It is important for them to be connected to interventions and supports as soon as possible. And so for many parents, we don't realize that these support services are available before a child enters school. And so in the state of Ohio, the program that we have as our early intervention services program is called Help Me Grow. And so help me grow, just basically has a service coordinator come in, do, um, an evaluation of your child to assess if your child has a developmental delay. And if your child, you know, is found to have a developmental delay, they will provide intervention services at no cost to you. And this is funded through IDEA as well, the Individuals with Disabilities Education Act. So for parents, it's very important for us to be paying attention to, you know, the developmental, the key areas, which include like speech and language, motor skills, social-emotional development, cognitive skills.

We want to, you know, when we go to those well-child visits, be transparent with our pediatrician about, you know, where our child is in their development. I know one of the questions that I always trip up on is like, how many words is your child (laughs), speaking? Um, it's important. That's, that's a very important metric at the early stage. And so you may need to like, keep track. Like, I keep tracking my phone of, you know, what word she's saying so that when I can go to our pediatrician visits, I can be, you know, as accurate as possible, because that can, uh, be an indicator that maybe that child needs some support-

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

... with speech and language. Um, with motor skills, it's really looking at like, can the child hold small objects? Um, can they use utensils? Can they climb stairs? Um, and then social-emotional development, we're really looking at like, does this child struggle with transitions? Do they struggle with playing with other children? Um, do they struggle with emotional regulation? And then cognitive skills, what we're really looking for in the early years, you know, is the child curious? Are they, you know, able to use problem-solving skills? Um, are they able to engage with their environment? Um, and so if we find that there are some areas that are lacking, um, we definitely want to, you know, express that to our pediatrician. And you can also, um, submit your own referral-

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

... to Help Me Grow. And so, um, you can do that on the website, which is just www.helpmegrow.com, or you can call, um, they have a one 800 number, 1-800-755-GROW. That's easy to remember, um, if you feel like you have, you know, some concerns about your child's development. Another resource that's available, um, to families on the Help Me Grow website are the ages and stages questionnaires. Um, they're available for free if you go to the Help Me Grow website. Um, and this can help you just with, you know, kind of, you know, a metric of where your child should be developmentally. And if, you know, there are some areas that you see that the child is not meeting, once again, I wanna, um, reiterate, um, engage in a conversation with your pediatrician about that so that, you know, once again, we can quickly intervene. Um, we can provide the supports, because that is going to help the child quickly get over the delay.

Dr. Mayme Marshall:

And those ages and stages questionnaires can give you an idea of what to work on with your child.

Natalie James:

Yeah.

Michelle Hughes:

Oh, for sure (laughs).

Dr. Mayme Marshall:

I mean, because sometimes as a board certified pediatrician myself, um, when I was practicing pediatrics, um, you know, some families will be like, "I've never done this with my kid."

Michelle Hughes:

Yeah.

Natalie James:

Yeah.

Dr. Mayme Marshall:

How do I know if they're delayed or if they just haven't done it?

Michelle Hughes:

Yes.

Dr. Mayme Marshall:

So it can be, sometimes I'm just looking for ideas of how to entertain my child.

Natalie James:

Yeah.

Michelle Hughes:

Yeah.

Dr. Mayme Marshall:

So that could be a good place to start as well.

Natalie James:

Yeah. And-

Michelle Hughes:

That's great advice.

Dr. Mayme Marshall:

[inaudible 00:30:58].

Natalie James:

I mean, 'cause when I was with my three-year-olds, you know, we referred, um, he got referred through his pediatrician, and then later on, you know, after we concluded services after his one surgery, we ended up self-referring 'cause we found some other things. Um, it's important to know that it just starts with the phone conversation with the Help Me Grow people. Like it's, it seems like it might be intimidating to have somebody come out to your house and so forth.

Michelle Hughes:

Mm-hmm.

Natalie James:

But it's really not. You know, you, you talk on the phone with somebody and say, "Hey, these are my concerns." And they'll say, "Oh, okay, well, you know, if that's a concern, you know, this is where they should be at. You know, it may be something that we wanna look at. And if you do, then we can move forward with this process. You know, if not, you know, these are your options." So use them as a resource too, and don't be nervous about it, 'cause it is very, very simple and straightforward.

Michelle Hughes:

And thank you for sharing that. I, and I also think it's important, um, to know with Help Me Grow, services are provided in the environments that the child is most comfortable.

Dr. Mayme Marshall:

Mm-hmm.

Natalie James:

Yeah.

Michelle Hughes:

Um, so they will come out to your home. If you are a working parent and you send your child to daycare, they can go to the daycare setting-

Natalie James:

Yes.

Michelle Hughes:

... and provide, um, services for your child. Um, if you, uh, sometimes are at home, but you have a week where, you know, the grandparents are babysitting-

Natalie James:

Mm-hmm.

Michelle Hughes:

... um, the child, they will go to the grandparent's home. You just have to sign a waiver, um, allowing them to do that. And so, um, we have this flexibility because, um, we recognize that it is very important to provide early intervention. Um, and that is why the state of Ohio has highly invested in this service. Um, because we know if we invest in it now, um, it will help us on the back end with later development.

Natalie James:

Mm-hmm.

Michelle Hughes:

So what I see through our clinics, um, our neurodevelopmental clinics are the, the kiddos that, you know, are, um, connected with Help Me Grow early, are, you know, by the time they're ready to go to kindergarten, some of those delays are, you know, resolved.

Natalie James:

They're gone.

Dr. Mayme Marshall:

Yeah, that's amazing.

Natalie James:

Yes.

Michelle Hughes:

And you would never know, um, you know, the journey of that child, this, their start to life, um, if you saw them at the, after the early, early intervention services. So I cannot emphasize enough how important it is, um, to do that. Another, uh, piece too, I hear this from a lot of families is can I, can I do Help Me Grow and private therapy? Um, yes.

Natalie James:

Yeah.

Michelle Hughes:

It's (laughs), you can never, you can never get enough early intervention.

Natalie James:

Yep.

Michelle Hughes:

Um, so you can do outpatient therapies, uh, you know, with, uh, Cleveland Clinic or your local hospital.

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

And, um, take advantage of Help Me Grow services as well.

Natalie James:

Yeah. And, and Help Me Grow services, they'll, they'll walk you into preschool too. Like, they'll walk you through the process of getting into preschool and kindergarten and walk you through the whole IEP 504 process if you are with them when they transition. So that's an important piece too, is that they'll help along the way.

Michelle Hughes:

Mm-hmm.

Dr. Mayme Marshall:

That's amazing.

Natalie James:

And the therapists are awesome.

Dr. Mayme Marshall:

(laughs)

Natalie James:

They are. They really are. They're very kind.

Michelle Hughes:

They become a part of the family.

Natalie James:

They do.

Michelle Hughes:

Mm-hmm.

Natalie James:

They do. And they teach you too, not just the child. They, they teach the parent-

Michelle Hughes:

Mm-hmm.

Dr. Mayme Marshall:

Yeah.

Natalie James:

... what we can do. Like, "Hey, if you hold this here and have your child step on this step, it'll help strengthen this muscle."

Michelle Hughes:

Mm-hmm.

Natalie James:

You know, they'll teach you as well as the child.

Dr. Mayme Marshall:

Well, this has been fantastic.

Michelle Hughes:

Yes.

Dr. Mayme Marshall:

Michelle, can you tell us about how our listeners can get an appointment to be evaluated in our neurodevelopmental support program?

Michelle Hughes:

Yes, I would love to. So I just wanna remind families that navigating, um, education systems and finding the right support for your child, um, as we discussed today, it can be overwhelming at times.

Dr. Mayme Marshall:

Mm-hmm.

Michelle Hughes:

And so we have, the Cardiac Neurodevelopmental Support Program at Cleveland Clinic Children's is here to support, um, our families from early childhood through young adulthood. And so our multidisciplinary team is dedicated to helping families understand the education process, that's my job, access the right resources, and most importantly, feel empowered every step of the way. We want you to have confidence in your advocacy for your child. And then it's also important to share that in addition to our Cardiac, um, Neurodevelopment support program, we also offer neurodevelopmental support for NICU graduates. And so this includes any child, um, who has had a prolonged stay in the NICU after birth. And then we also have just recently started a diagnostic clinic for children, um, with prenatal alcohol exposure.

Dr. Mayme Marshall:

That's wonderful. Is there a contact for how to get an appointment scheduled?

Michelle Hughes:

If you would like to schedule an appointment with one of our neurodevelopmental support programs, please visit clevelandclinicchildrens.org/nsp. Once again, that's clevelandclinicchildrens.org/nsp. And we are here to support you and your child every step of the way.

Natalie James:

And it's wonderful.

Dr. Mayme Marshall:

Um, and Natalie, do you wanna share a little bit about how we can get involved with healthcare partners?

Natalie James:

Yes, absolutely. So we would love additional, um, patients or parents to be a healthcare partner. All you have to do is send a simple email to childrenshealthcarepartners@ccf.org. Again, that's childrenshealthcarepartners@ccf.org. When you email, you'll receive an email back about how to get started in the process. And it's a very simple process. You go through an online portal system where you become a Cleveland Clinic volunteer, and then they'll walk you through the process where you can meet once a month with the healthcare partners, share ideas, share experiences, and really just help the medical team understand a greater view of, you know, the patient experience. And that's really what we really advocate for, is a better patient experience overall.

Dr. Mayme Marshall:

Yeah. Thank you, Michelle, for [inaudible 00:36:41].

Natalie James:

Yes, thank you.

Michelle Hughes:

Thank you for inviting me.

Dr. Mayme Marshall:

Thank you, Natalie.

Michelle Hughes:

This was great to talk about.

Dr. Mayme Marshall:

Early intervention is very important for children who have complicated medical needs. We want you to feel knowledgeable and confident when you ask for the right support for your child's education. If you'd like to schedule an appointment with a Cleveland Clinic Children's pediatric cardiologist, please call 216.445.5000.

Speaker 3:

Thanks for listening to Little Health. We hope you enjoyed this episode. To keep the Little Health tips coming, subscribe wherever you get your podcasts, or visit clevelandclinicchildrens.org/littlehealth.