Feeding Matters
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Brianna Miluk: Hello, hello, and welcome to the Feeding Pod. This is your host. I'm Bri, Brianna Miluk, and I am a speech language pathologist and certified lactation counselor. I specialize in infant and medically complex feeding and primarily see patients in the home health setting, although I do have some that I see an outpatient or via tele practice.
I'm also an instructor at the university level and a PhD student studying communication and information sciences. I have a huge passion for evidence-based practice and supporting information literacy in speech, language, hearing, feeding, swallowing sciences specifically as it pertains to social media and translational research.
This podcast is meant to share anything and everything related to being a pediatric feeding SLP, feeding therapist with sprinkling in a little bit about working in academia, being a PhD student, and how to access appraise and implement research into clinical practice.
Some episodes may contain guests, and I'm already looking forward to some of those coming up, while others might just be me rambling about something that's been on my mind. Regardless, my goal with this podcast is that you walk away not just with newfound knowledge, but with the inspiration to think critically and not be afraid of research. So, without further ado, let's get into today's episode.
Welcome back to the Feeding Pod. This is Bri and I'm so excited cuz I have some really awesome, important, amazing people here today to talk about Feeding Matters. And so, I have Cuyler Romeo and Athena Flicek. Did I get it? Yes.
Athena Flicek: Yeah.
Brianna Miluk: Okay. And I'm so excited because we are going to be going through, you know, the International Pediatric Feeding Disorders Conference. We're gonna talk about some takeaways, which I'm really, really excited about talking through. We're going to go through the advocacy pillar symposium, which is part of the conference, but there's so much advocacy work that goes on year-round constantly. And so, I'm really excited to, to bring that to the forefront and really share how Feeding Matters is more than just a family resource, but really something that can help across, across the globe. Like right before we got on this call, Cuyler was saying it's very like systemic, like we want big change. And so, it's not yes, we have family support through Feeding Matters, but also for clinicians, for organizations and really making change for pediatric feeding disorders.
So, I'm really excited that you all are here to talk today. So, what I'm gonna do is I'm just gonna kind of pass it over to you. Give us a little background about who you are and you know, how you found Feeding Matters, like where you started with them, and then your, your role with them today. So Cuyler, I'm gonna have you, you go ahead and go first.
Cuyler Romeo: Okay, great. First, thank you so much for having us. We really appreciate the time and the energy that's given to just spreading the word about how we can come together and support all of our families with pediatric feeding disorder. So, my background is in feeding skill. I'm an occupational therapist by clinical trade.
I'm board certified in feeding, eating, and swallowing. I'm also an IBCLC. And if I kinda look at my, my clinical history, I've dabbled in, well, I've worked in every arena focused on feeding, cuz I started with my level two rotation in the NICU doing feeding and swallowing and intervention, and I just never left.
So, I'm currently practicing at Banner University Medical Center in Tucson, Arizona. That's where I live currently. I am a Texan at heart and that's where I was raised. But now I'm in beautiful Tucson. And so, I continue to work in a level three NICU and I do like instrumentation on the diagnostics for swallowing and program change within the NICU.
And then at Feeding Matters, I get to put on this other hat. I'm so blessed to have two hats that I get to wear and really bring that clinical lens and combine it with all the expertise that Feeding Matters provides on staff and for our board and our executive council and all of our volunteers to cause system-wide change.
So, a lot of people always ask like, what are strategic initiatives? Like strategic initiatives is when you just kinda take this high-level view and you have awareness and understanding of what's happening at different levels of care. So, you understand what's happening with policy and the legislation with clinical practice, and most importantly you're responsible for tapping into the needs of the entire community.
So that's having these conversations with people that influence how care is delivered. And most importantly, having a connection to other areas of Feeding Matters so that we are elevating the family's voice. So that's a little bit about me. I'm a mama of three kids. I have identical twins and then a singleton, they're like a year apart. So, if I'm not working, I'm mama working. That's pretty much my story.
Brianna Miluk: Yeah, that's that's never off the clock work, which I'm sure Athena can relate to. So, Athena, I'm gonna pass it over to you. Thank you Cuyler for that. That is super helpful, understanding your background there. So, Athena, you're up.
Athena Flicek: Thank you. I also wanna say thank you for having us. We just love talking about what we do and how to help. All the kids that have PFDs, my personal background, I know how important that is. I 'm from Minnesota, which is where I'm right now, visiting my parents and my background's in education. So, I got my teaching license in ESL way back in the day.
And then I taught, I've taught all ages. Kindergarten through adults and GED. So that's where my background comes from. And then I moved to Arizona where I live now, and I had my beautiful son, Ari, who had trouble feeding right from the get go. So, and they were looking at me and I was looking at them and no one was looking at him.
And I was like, okay what's going on? So, after a year and a half of just straight up struggles joy in there as well. But when you're had them a struggle, it's hard to, it's sometimes hard to smile when you want to. My pediatrician was like, why don't you check out this website as I was walking out the door after crying in her office for an hour.
And, and she's like, why don't you go to the Feeding Matters website? So, I checked it out and I, it took me a little bit to, to get the courage to go online. Cuz it's like, you have to like admit like, yes, I need help. Which is hard when you're trying to like, supposed to do it yourself all the time and everyone's taught like, oh, you know, yeah.
Every, it's, it's a struggle for everyone. Just get through it, you know? I was like, I'm not getting through this one myself. So, I went online and clicked on the help button and that's how I sort of got involved with Feeding Matters. I was- looked over the resources. And then I got called in with Jaclyn to help with a little volunteer thing.
And then there was a job opening last year and I applied, and now I'm the program, an events manager and I manage our amazing conference and all of our amazing committees, which Bri you're on. And thank you for your service. And it's just a great way to put all my passions together of education and now PFD with Ari and how much he's grown, but still struggling, and it's an amazing, amazing organization.
Brianna Miluk: Awesome. I love that I have both of you on here because we have like a professional in the PFD world who found their way to Feeding Matters and then also a mama who found her way to Feeding Matters. And then both of you are so kindly giving back to the Feeding Matters and the PFD community and it's just super, super awesome. So.
Cuyler Romeo: Bri I did not answer the question of how I got involved in Feeding Matters.
Brianna Miluk: Oh yes.
Cuyler Romeo: So serendipitous cuz I'm here in Tucson, Arizona and I had started with four other OT partners of pediatrics feeding specialty clinic here in Tucson. It's called Mealtime Connections. And one of my business partners is, she's pretty well known and published, authored. It's Marsha Dunn Klein. She was very involved, like from the get-go. With Feeding Matters, when it was really this grassroots campaign that was driven by families.
Brianna Miluk: Was that when it was Popsicle still?
Cuyler Romeo: Popsicle, yes. Back in the day when it was Popsicle. And she was the one who said, oh, they're doing some really great work in Arizona. And I do, I have background in, in system change and, and like the payer relationships and, and that sort of thing. And so, she put me on like a a list to be a volunteer and I did some volunteer work for them.
Brianna Miluk: Mm-hmm.
Cuyler Romeo: And when they received some funding for this position they gave me a call. So that's how I found Feeding Matters is through the professional connection. But again, it was knowing the organization and volunteering and just really being invested in the mission. I think that's led both of us to where we are.
Brianna Miluk: Mm-hmm. Yeah.
Cuyler Romeo: And how we got to Feeding Matters.
Brianna Miluk: Yeah. That's awesome. No, I think that Feeding Matters like you said, the mission and everything is just so amazing and all the work that's being done that I truly feel like as a volunteer with Feeding Matters too, that like, I don't wanna leave it like, it's like, it's like once you start you're like, oh my gosh, everybody is amazing. The community is great. Like I always feel so good about myself. I'm like, everyone's like, great job. I'm like, I don't even know that I did much, but like, thank you. Like, it's just everyone's amazing. And so-
Athena Flicek: No, you do so much volunteer is how to start obviously with a small nonprofit and literally a lot of people like committee members wanna grow with us. And as we're getting bigger, bigger now, it's like we're adding more position, you know, like we are growing as a organization, so it's a great way to get into something that's really gonna take over.
Brianna Miluk: Yeah. I just, I super respect how well Feeding Matters has done with organizing volunteers and approaching the volunteer base. And like I remember the very first call that I had one on the conference committee, like the first thing we talked about was like preventing group think. And I was just like, I've never been part of a committee or an organization that was like, Hey, guess what? We don't want one person to like, Do all the talking and everyone else just like fall on it because like it stops creativity, it stops innovative thinking.
And I was just that from the start I was like, this is awesome. Like I'm so happy that like that's even being talked about in this type of setting. So, total side note, but I think it was important to share because like the values of Feeding Matters are just amazing. Amazing. So okay. So, let's kind of dive into what we're gonna talk about today.
So first I would like to hone in on the International Pediatric Feeding Disorders Conference, of course. And this is an annual event for those of you that aren't familiar with it. And Feeding Matters has done a really great job of providing it in a platform that is super accessible and, and honestly very, very affordable for a conference, which is one of the reasons I really like it, and it's open up to it's not just for professionals, but it's also for families. And like they have students that, you know, students can attend and kind of get an idea of what PFD is. And so, I really love that. But I really wanted us to kind of talk about a couple takeaways from the conference. First I want to bring up the keynote address of this last year.
So, we had Dr. Anka, Roberto, and she just her keynote address, just for the title was Healing Feeding Trauma, it Takes a Village and it was just so powerful. It was amazing to hear. And you know, she's not just a professional who works with people through trauma, but also a mom who's, who's been through p- a child- who has a child with pediatric feeding disorder who had, you know, medical trauma that went through it.
And I thought it was amazing that her daughter came and spoke as well about her experience to kind of give insight into that. And so, the keynote, I think was just incredible this year and I think really honed in on the rest of the conference and that feeding and eating is not just about the food we take in and it, it's so much more than that.
So, I'd love to also hear you all reflect a little bit on that keynote, because I know for me it was just like, I feel like my mouth was just open the whole time. Just like, this is, I love this, it's incredible. I'm learning so much. But yeah. Any, any thoughts on there?
Cuyler Romeo: Oh, I completely agree. It- I find the lived experience so power- powerful. And as particularly when you're, you kind of like get embedded in your day-to-day routine whether you're practicing clinically or you're taking care of your family or you're doing something else professionally. And so, you kind of stay siloed right in your own little community. And when we have access, To hearing the lived experience that's multi-generational I feel like that's where we really can learn. That's, that's really where we can tap back into taking a holistic view of what is feeding our children, what is eating for our own bodies and what, you know, what really comprises a mealtime. I thought it was the perfect way to get conference started. Like you said, and also looking at the trauma-informed lens.
So, this is something I think that we are seeing a lot in the literature. I'm seeing at other conferences as well, but it's not quite a strong topic of conversation in clinical practice. So, we're starting to talk about it, right? We're building the foundation of understanding, but it's gonna take people that are attending conference to try to bring that information and pull it into what they're actually doing when they're working with families or when they as a family are being served by others.
Brianna Miluk: I think that's such a great point. One of the things I will talk about with people when I'm mentoring or teaching courses is that when we look at the four domains of PFD, I find psychosocial is overlooked a lot. And I think that's exactly where that trauma-informed lens and trauma-informed care plays a role.
And like you said, more and more people are speaking on their lived experiences and we have to think about that and that's also why as tough as it is, especially when you're a newer clinician, to find out, like there's no cookie cutter way to, to manage, you know, pediatric feeding disorders like this is exactly why, because everybody's experience is different and we have to take that into consideration as we move forward.
Cuyler Romeo: Mm-hmm.
Athena Flicek: I agree. I was with, obviously I got the pleasure of recording Dr. Roberto before she recorded. We talked about, so I was like, you have to get your body healthy. Then I thought, wait a minute, like what she's talking about is you have to get your mind he- healthy, right? And that then your body will follow.
And that's why I have those things that, like with Ari, especially, like he, he is gone through them but now he's in that psychosocial portion of like getting him to be more comfortable and happy around food and meal times, which his whole, he basically was born having negative food experiences and he had that for like at least three years.
Right. And he still sometimes has some negative ones, so that kind of comes up for him. So, it was just so amazing to hear her talk about that part and her experiences just as a parent. And how that affects you. And she talked about how that affected her as a clinician and also as a mother. And then seeing a child like all that's connected together, cuz we all affect each other and all of our trauma affects each other.
Right. We don't think about how my trauma is affecting Ari and Ari's, yeah Ari's is affecting me. It's like a cycle. So, I had to get in there and really work, work through that. But all the providers, like I just did an event report and a survey literally. It was amazing to me to see like over half or like I like, it's like, you know, the trauma piece is there and the psychosocial is there, but you don't like think about it every day.
So, like having that, see that keynote, they were like, I'm really gonna like think about that more and put it into my practice about how that affects people and families and the children. And it was like really eye-opening for a lot of our audiences here to have that as a keynote. So, yeah, it was great.
Brianna Miluk: Yeah. I think that goes off of what Cuyler was saying as well, where like, we know it's there, but for some reason it's like a little bit under discussed and especially in the clinical setting.
Cuyler Romeo: Mm-hmm.
Brianna Miluk: And I think part of that's because it's, it's a difficult topic, right?
Cuyler Romeo: Mm-hmm.
Brianna Miluk: Like it's, it's difficult and, you know, that's also why it's so important. Like difficult things tend to be, tend to be really important and so.
Athena Flicek: Mm-hmm.
Brianna Miluk: I think that it was just, Really awesome that Feeding Matters. Chose to do that as the keynote address to say we're, we're gonna have the conversation, like, we're gonna talk and, and open up the discussion about these difficult topics. And I remember during the keynote address, just like the chat with everybody going in was just like blowing up with people.
Athena Flicek: Mm-hmm.
Brianna Miluk: Like you know, whether saying like, I'm so glad we're having this discussion, or like, I never thought about it this way, or, you know.
Athena Flicek: Mm-hmm.
Brianna Miluk: Fill in the blank. And so, I think it was, it, it was really great because it is an under discussed topic.
Athena Flicek: Mm-hmm.
Brianna Miluk: I think it's getting there more and more, but I love that Feeding Matters that like, you know, not really many people are bringing this to the forefront and we're gonna do that. We're gonna we're gonna bring that up there. So, I thought that was really awesome.
Athena Flicek: And mental health, still has like a kind of a stigma to it, which is difficult, but you don't think about that with kids sometimes.
You don't think about like, Like early, like young eater feeders. You don't think about mental health, I guess, but it's like, no, it's there. And like, like with me, with Ari, I could see it from the beginning. Like even his body reaction was like, oh, that's coming from something psychological, right? Mm-hmm. You shouldn't be seen as thing and being like, have this body reaction. So, it's so interesting at that and like, yeah.
Cuyler Romeo: One of the other things that I thought was a nice connection is that when we're talking about like, well, why are people not kind of embracing trauma-informed care in clinical practice is that it really taps into the soft skills. It's not I place a bite in between the molar ridges and yada yada yada.
Or I use a particular maneuver or viscosity or something that's extremely concrete, black and white. You can look up the literature, right? You can look at the and do a lit review and things like that. Trauma-informed care, you can, but it's more of an understanding and an awareness that then changes your competence in how you communicate.
And so, this was really brought into pre-con. So, then you're seeing all these connections, cuz Pre-Con was focusing on those soft skills and coaching strategies, which is directly informed by trauma informed care as well. Like if you have an understanding awareness of trauma-informed care, that person is perhaps gonna take the next step of, well, how does this change my approach, my communication, my integration of family planning, how do I connect with the psychosocial? So, there's so many connections that came off of just that first keynote.
Brianna Miluk: Mm-hmm.
Cuyler Romeo: And that was just the first hour. So.
Brianna Miluk: I know, and it was, it was such a powerful hour. Like it was so powerful. I mean, just all, all of those takeaways and themes that we were able to get from it. So yeah, I, I could probably talk about that individual session for the next hour. So, I'm gonna keep us moving. So, Athena, I would love if you could give us just like some of the, like, like hard stats behind the conference.
Athena Flicek: Mm-hmm.
Brianna Miluk: You know, like what were some of the things that were achieved this year in terms of, you know, who was there, what are the numbers at you know, maybe just like a little bit of the you know, feedback of, of what other people said as well. And then I have a few takeaways that I wanna share in general, but I'd love to get some of that information first.
Athena Flicek: Yeah, definitely. So, this year we had 1040 people. Which was amazing. My goal was just get over a thousand. Cuz this year we were co scheduled with a couple other major conferences, so we're not doing that next year everybody don't worry and everyone's, cause we, we have announced that we're going back to in-person in 2025, but we will always have a virtual conference because we're we're always gonna have that. That's part of our strategic plan is to always feed digital first. So, no one worry. People were worried in that survey. They're like, don't take it away virtual. Don't worry, it's always gonna be there.
But out of our our 10, our 1040 people as usual, we had about 60% are healthy professionals. 10% of community members, 10% families. So that, those numbers for me are always a little bit low when I think about like who's coming in. But again, we are trying to get the word out there and people that are working with PFD are those professionals. So, it's important to get them their information.
We had some big groups coming in. Our biggest number of course is SLPs. This year they're at 40%, and then our OTs were at 20%. And then diet and, and nutrition was at 10% and that number grew a lot from last year, which I was happy about. And a lot of people wanna see more talks about nutrition and things like that when it comes to PFD, so that, that was really interesting to see.
And then we were at from, had people from 65 countries all, all about one continent of Antarctica. Which is double what we had from last year for countries, which is super awesome to see. And then we had almost all the states, I won't mention the states we didn't have, cause it always makes me a little upset. But that's okay. We're gonna get there.
Brianna Miluk: Prioritize those states next year.
Athena Flicek: I know.
Brianna Miluk: Where are you?
Athena Flicek: Who are you? Have you never heard about us? We know you have children in your state.
Brianna Miluk: Yeah surely.
Athena Flicek: Yes, for sure. *Unintelligible* it's funny. Yeah. At least that's the big group stuff. But yeah, we also have 10,000 hours of continuing education earned and people were overall, everyone loves the parent perspective.
They love the trauma informed care; they love the lightning talks for everyone's like those 12 lightning talks. Were all the rage and they're always amazing. But this year, like these are the best ones. Like, and there were 12 of them, so people really had to sit through like 12 lightning talks and they were amazing. People love those little, little short bits. So those are the hard, those are the hard facts.
Brianna Miluk: Awesome. I love that, no again, I mean, that's huge. Just like what a testament to the impact that you all are making.
Athena Flicek: Mm-hmm.
Brianna Miluk: I mean that's just.
Athena Flicek: Oh, I did wanna shout out to Dr. Roberto this, she had perfect attendances for her keynote. We've never had, Our registrant number match our keynote, like our attendance, her attendance for our keynote, which really says- it's amazing.
Brianna Miluk: Give her the certificate.
Athena Flicek: I know I need to get her one.
Brianna Miluk: Perfect attendance.
Athena Flicek: Perfect attendance Dr. Roberto. Thank you.
Brianna Miluk: Oh, that, I mean, that's huge. That's huge.
Athena Flicek: It is huge.
Brianna Miluk: That also shows that like we were talking about, like this conversation does need to happen, you know?
Athena Flicek: Mm-hmm.
Brianna Miluk: People, people I think are ready for it, and so.
Athena Flicek: Yes.
Brianna Miluk: It was very appropriate, but Oh, that's so awesome. I actually will 100% second that the Lightning talks this year were just exceptional.
Athena Flicek: Mm-hmm.
Brianna Miluk: Like, I mean, like you said, every year I love them, but something about this years' were just really good.
Athena Flicek: Yes. I agree.
Brianna Miluk: I, I felt like everybody who had one was just.
Athena Flicek: The submissions were amazing. Like of course, we like couldn't say no to, like, we had to like pick 12. We only like, we only have room for how many? We're gonna do 12.
Brianna Miluk: Yeah.
Athena Flicek: And then I will say, since we talked about Marsha Dunn Klein and like the, like a, a big one this year people really love was that compassion side of things.
Brianna Miluk: Mm-hmm.
Athena Flicek: And like a lot of people really talked about how that was amazing to see in that practice and her speaking, and everyone wants her back next year. So, Marsha, if you're listening, you gotta come back next year.
Brianna Miluk: Yeah, I love it. No, I think that that's so important and kind of goes into some of the, the takeaways that I had. So, one of them was just because there was such a theme around this like trauma-informed care lens that I feel like there was so many talks that were really like, Food is, or feeding and eating is more than just the food choices, it's about enjoyment, it's about respecting bodily autonomy, it's about relatedness and connection over compliance and
Athena Flicek: mm-hmm.
Brianna Miluk: Really focusing on that. And I feel like that was one of the key takeaways I had was really that like building connection and trust and
Athena Flicek: mm-hmm.
Brianna Miluk: And moving, moving from there. Also, I think there was a big one on Social determinants of health and health equity. There was a couple Lightning talks specifically on those.
And I think and also a session that was on social determinants of health. And I think those are also very much part of trauma-informed care and, you know, being responsive to other cultures and other circumstances that may be going on. And I thought that those were really, really great. And all of these do lend itself back to that like family driven model, right?
And keeping the family at the center of every decision we're making. One thing that I will say that kind of had me challenging my beliefs a little bit was there was one session where it had an approach that was a little bit more behavior based and that's very different from the way that I go about therapy.
However, I think it was important for me to still go to it and be part of it because it's okay to disagree with approaches. Like, it's okay to recognize that there's other ways to go about something, and a lot of times you can still gain information from them. For example, with that one specifically, I remember walking away and saying like, okay, so we have this literature that says this type of approach works, but we also have a lot of literature that shows about being responsive and, you know Prioritizing connections.
So how can we implement some of those approaches in a, in a more responsive manner? So, I think like even being able to take that away was really good. Cause I sat there and I was like, duh. Like immediately wanna be like, Nope, just mm-hmm. Nope, not gonna listen. You know? And it's like, well that doesn't do any good either.
So, taking that information and saying like, I don't agree with all of this, but how can I. Make it fit for the way that like I go about approaching it. So, I thought that was really cool. And then the final like main theme that I had was that feelings of competence don't only matter in the child and making the child feel competent in what they're doing, but we also have to make sure that the families and the caregivers feel competent in what they're doing.
And I think we're really, you know, a lot of times as, as feeding therapists, it's like, Patient, patient, patient, right? And it's like, well, we also have to think about the family. And so when we're providing recommendations or strategies or trying to like support a plan of care, we wanna check in with the caregiver and make sure that they feel like they are capable of everything that they need to do to support their child and making sure that we're helping them better understand treatment plans and the process and like, what would the next step look like? You know, if this happens, then this. And really helping talk through that process.
Cuz I think building that feeling of competence, like, like self-efficacy can make such a difference in, you know carryover of strategies, home programming, making sure that, you know, the, the caregiver understands that like, They are the best option for their child and they do know their child the best and that they are capable of, you know, all the things that we were learning about that we're gonna then, you know, regurgitate to them that they're completely capable as well. So yeah, those are kind of my, my main themes from it, which is so many.
Cuyler Romeo: I love that.
Athena Flicek: Great takeaways.
Cuyler Romeo: That you bring up the family side and the focus on the family because that's just like one of the key tenants in my own treatment approach is bring, is I consider my client first is the family, is the parent, is the caregiver.
The child, of course, is a primary client if I'm like working through medical complications. But a child is dependent on the parent and the family unit to provide everything associated with the mealtime experience. So, like really, who is our primary client? It's, it's whoever is providing the mealtime.
Athena Flicek: It's me. I'm just kidding. It's so funny. This happened to me during, we started being before Covid. So, we had one session in person with Susan Hodkins, our amazing OT and then Covid hit. So, then I was at home and I was thinking I just had hope and now I'm like, I'm expected right to be at home with this child who I'm working through feeding therapy with like a zoom.
Here's Zoom. Here's Susan on Zoom. Here's Su- Come here Ari and I put her on the table, you know, he's like coming to the table. There's Susan. But I was like, I had a, she really empowered me to feel like I can do this. Here are the strategies. And she was amazing with Ari as well. But you're right, like I needed that support.
From like that, that guidance from her to really move forward in the way that, cuz it's like we told our, like, as a teacher, if you don't do homework, you're not gonna get ahead. Like, that's what it is. Right? If you don't do your homework, you can't just go to, you can't just go to the class of therapy and then just leave it. Okay? Well, forget it that's not gonna happen.
Cuyler Romeo: And you give credit where credit is due. So, if that child is making progress, if you're seeing positive changes, we should not be patting ourselves on the back as a therapist or a clinic or the. Or the physician or whoever we should, it's the parent that has done that.
Brianna Miluk: Mm-hmm.
Cuyler Romeo: It's the parent and the child as a connected team. Not us as the therapist. If we, we may be a coach, a support, a catalyst, but we are not the people that should be getting the recognition for those advancements. I'm super passionate about bringing that part.
Brianna Miluk: I 100% agree. I always like bring back to parents, I'm like, they're like, Hey, you know, this started happening or this has changed or this has improved. I'm like, that's a testament to you. Like.
Cuyler Romeo: Yes.
Brianna Miluk: 100% me coming one time a week or even two times a week and doing this like. It's not gonna make any type of change unless it comes for you. And then I think also part of that, building the competency and doing it in a family driven matter is making sure that we go, again, back to those soft skills Cuyler and making sure we're connected with the caregivers as well, and that they feel comfortable saying that strategy's probably not gonna work for us.
Like is there something else we can do? Or, Hey, we tried this but it didn't work. And making sure that they're comfortable with saying when things don't work and, and how we can modify it from there too.
Cuyler Romeo: It really brings back to the me back to the Family Education Forum, which some people may not be aware that this is an event that's open to the public and is connected to our conference as well.
But we recognize that families need empowerment for education. So, when we have our first day of conference, we kick it off with Pre-Con, which is focused on family-centered care, principals and tenants. And then right immediately after we have the family education forum, and this is specifically for families where they can come in and have connection and education and our, my takeaway from that was that families left that two-hour event and it caused them to have different conversations with their teams, different conversations with their physicians, and have immediate change. And I thought, gosh, we do so much continuing education and focus on education of the provider, people serving the families. We need equal, if not tenfold education supports for families since they are the outcome. So, this is something that we are gonna continue to grow in the future and continue to build on that face.
Brianna Miluk: Yeah, I love that because I think ultimately like caregivers are the best advocate for their child and they know their child best. And so, all of this just helps with that empowerment.
And again, going back to building their feelings of competence, like feelings like I am capable of asking for what my child needs, doing what my child needs, and, and not feeling like. Oh, well, they're the expert, so I'll just, you know, listen to 'em. I'm like, no, no, no, no. I'm, I, I have, you know, training in feeding, but you're the expert on your child, and so I need you, I need your expertise throughout this whole process.
Athena Flicek: We're, we're definitely a team. Like I would say, no one can do it by themselves. That's a hundred percent true. That's why it's so great to see the session, the collaboration sessions that we had this year and people really like, like reaching out. Once people like were like providers, like they would reach out to other disciplines to like work together once they saw some of the sessions.
And it's just so important to do that because it takes everyone and we all like, and parents need confidence. Cuz when you're a kid you can't feed your child it's like it takes a huge piece of you away. Cause you're supposed to be able to feed your child. That's like a not, that's like, oh that's easy.
It's natural. Yeah. Right. And when you don't, so like billing that is really important. And a lot of people, providers this year wanted to see learning talks from parents and I was like, what a cool idea. Right. To have a learning talk from a parent. And I was like, a lot of people mentioned that in the survey. So, I think that would be great to have too.
Brianna Miluk: Yeah I love that. Well we'll do a plug at the end for how people can submit. For sure. So, any caregivers listening, it would be really helpful. Okay. Awesome. Thank you. That was, a great overview of the conference. And the next piece I want to really highlight is the Alliance, the Advocate or the Alliance Symposium and this year specifically, it was the power of advocacy was really kind of like the, the main topic and title of it. And so. So, the people that are on the alliance or, or who were on the panel for the Alliance Symposium were Cuyler, who we have here. Dr. Amy Delaney. Dr. Paula Raeby. Dr. Erin Ross and then Amber Mieras who is on the Family advisory committee chair. So, All of those people were on the panel to really facilitate this talk. And Cuyler, I'm so happy you're here to, to talk with us about it. So, if anyone is unfamiliar with what the PFD annual Symposium is it's one of my favorite sessions because it's so interactive in nature.
So, I'm gonna kind of read the like little blurb, but basically it's a live event where the participants that attend. Have the opportunity to share ideas so you're sharing your challenges, your barriers to implementing care that you want to as well as generating ideas on how we can better support families and clinicians that are working with, with children, with pediatric feeding disorders.
And I just think it's. It's just awesome because it, it always brings up so many cool ideas. But also, as a clinician, I can say a lot of times these are validating for like, oh, you are having the same barrier that I am, and now we have all of these brains in a room to put together to say, how can we may be overcome this together?
And it's just so awesome. So, Cuyler, I would love to, you know, kind of hear some of the, the themes that were going about. So, I know there was like, you know, kind of three main areas that were discussed. So maybe first, what were some of the you know, key advocacy needs or ideas that were generated through the symposium?
Cuyler Romeo: Well this really takes us back to the advocacy agenda. So, the advocacy agenda for Feeding Matters is our system-wide plan for change. It's basically all the actions and the work that the entire community does. This is what we hope it's leading to change. And so, we've broken that into like these six key areas of where we feel that action and work will have the greatest impact.
So that's insurance coverage for pediatric feeding disorder, that's a primary aim. Having children qualify for early intervention services based on having a diagnosis of pediatric feeding disorder is an aim. We also want an educational pathway. That will lead to competency in order to serve children with pediatric feeding disorder.
And then we also have representation research. We need it to be federally funded. We need our children screened at well-check visits. And then we also wanted best practices, like we wanna con- continue to publish and develop the literature that supports best practice for assessment and management of pediatric feeding disorder.
So, if you kind of think of like, what's happening in the alliance, what do we do? What is conference contributing to? Everything's working towards these big six aims. So, each year we crowdsource. This part of advocacy is really staying connected to the community. We need to know what people want, what people need, and what people think.
So, every year we do a community driven change Question. It's posted on social. It's sent out through survey. It's through our newsletters. Anyone and everyone can participate and share their voice, and then we take all of that information and we analyze it. To have a better understanding of who is saying what and why, and then we bring it back to this international audience and we talk about the results of the community driven change question.
And then we gather even more input for everybody that's in symposium. And like Athena had mentioned earlier, this is an inter, this represents an international reach, which is fascinating to see how people from other systems of care and other cultures and other parts of the world, what their viewpoint is on how to reach that advocacy aim, or what are they doing in their own area that's causing change?
Because we just need diversity. We need more ideas and innovation, and that's really what's gonna cause rapid change like we are in a rapid action business. We do not wanna take 20 years to reach these aims. We move forward fast. We always say fail fast, pivot faster. And that's how innovation works, particularly in system change.
What was so interesting this year when we posed the question, we're like, out of those six aims, what do you think would have the biggest impact? And we had our own idea coming in as an organization, and I tell you it was not what the results were, which is highlights why you have to constantly crowd outsource and ask the people that matter, which is the families and the professionals that serve them.
So, what came to the top was insurance coverage. Is what everybody was wanting. And we really thought, oh, you know, if we go from publishing the consensus definition and then people are gonna want the next publication. They're gonna wanna know, well how do I assess in management and you know, get credit where credit is due yet again, our community was like, Nope, we got that.
We want to now know how do we get coverage? How do we ensure families can get into care? And then they also wanted to know, what else can we do to intervene earlier and sooner? Which connects back to the whole trauma-informed lens and responsivity to our families. So that's where our discussion circled around, we talked about our top three and dove in deep to hear what were people's challenges and what were their wins.
And we had the most robust discussion on insurance because that was the first topic we discussed. And it is hard to contain the conversation during symposium, I feel like I need another symposium for the other two questions to dive into those a little bit deeper.
Brianna Miluk: Yeah like a topic discussion one topic like or even like, I wonder if you did like little breakout rooms where you're like, if you wanna talk about this one, go here. If you wanna talk about this one, because.
Cuyler Romeo: We have exciting things planned for next year. Don't you worry.
Brianna Miluk: So exciting. I love it.
Cuyler Romeo: Everybody's innovative mind has already created quite an idea list.
Brianna Miluk: Oh my goodness.
Cuyler Romeo: For us.
Brianna Miluk: I'm so excited. I'm so excited. Yeah, I just. I love the symposium because of the fact of how interactive it is. And like you said, like Feeding Matters really does take the information that providers and caregivers share and say, okay, that's the priority for our community. And so, we need to really like, you know, hone in there, prioritize there, and spend a little bit more time there to support the system change that seems to be making the biggest impact or what's the biggest barrier to getting care for families.
And I think that is, Definitely one that I hear as well. I'm in South Carolina and I will say that it has been really great getting coverage for the Pediatric Feeding Disorder code. I feel like it's been been very successful since the, the code went through but I know other states are still having pretty big battles with it, and so You know, hopefully that can, can move forward. And I will say that's, that's mostly with state insurance, not private insurance. Private insurance is another story, which is very difficult. Cuz that's what many families have, so.
Cuyler Romeo: Right. And a lot of people are asking us, well, what, what are we doing as Feeding Matters and what else has been done in the community? And so, a couple of the key takeaways that were connected to insurance coverage is that we're seeing a powerful use of published materials, collateral, and resources that are free and open access provided by Feeding Matters. Because that's what our job is, is we're to provide the resources and empower people to use them.
We do not wanna reinvent the wheel. We wanna spread the information so that all these different actions can be taking place in a, in, in system way that makes sense to that person.
Brianna Miluk: Mm-hmm.
Cuyler Romeo: So, what one I thought really powerful example was the consensus definition. So, we did have an institution that took the consensus definition and submitted it to a particular payer as new evidence and then requested funding for multidisciplinary evaluations within that facility because it was supported by the consensus definition and it was approved. So, you took the current literature, you cited it, you had a peer-to-peer connection call, and now they're being covered for multidisciplinary evaluations.
It's really about taking the collateral, learning the collateral, knowing the collateral, and then how are you gonna leverage it. But we do feel like we need to have more in, we need access to the information, like I said, in real time. So, what y'all can expect in the future is that we're building out a landing page where people will be able to submit their wins and their barriers for insurance coverage and, and kind of fill out key fields.
Who is the payer? What's your state? What's your country? Who's the provider? Like gathering that information so that Feeding Matters can take that information and use it to power the conversations we're already participating in with the payers. So that's something that we're doing for our community, for system change, is that we're having those conversations. But there's much more to be developed in this area and people need tools so they can do things quickly.
Brianna Miluk: No, I love that. I think that's really helpful. And I'm gonna be sure to put in the show notes some of those resources that are already available. Like, I know there's the you know, like the, the consensus paper, of course, but there's that whole entire resource on the ICD 10 codes and what the, you know, the definitions and what they mean and how do use them.
Cuyler Romeo: Mm-hmm.
Brianna Miluk: And you know, some of those, those resources, because I think, like you said, it's like, okay, Feeding Matters has gotten it for you, and then you have to take it from there. And so, knowing where to find that will will be helpful. So Yeah.
Athena Flicek: Like for that consensus paper, like as a parent, like I was in education so it wasn't as intimidating to me to read that. But like every parent needs to read that. And then I read it, like I read it about four times a year because every time I read it, like something new pops up for me about Ari and like what he's going through. And it's so helpful to know. So yeah, we've done, that's gonna lead to lot things. Don't be afraid to read the paper.
Brianna Miluk: Yeah, it's incredible. And I think, like you said, like when you think about a, a pa- a paper, it can be intimidating, but it's really so well written that I truly think caregivers can understand it. So yeah.
Athena Flicek: Yes, if I can everyone else for sure can.
Brianna Miluk: Yeah. Okay, so I'm gonna shift gears a little bit and before we go into kind of. You know, some of the, where, where is Feeding Matters going from here and how people can get involved. I wanna do some rapid-fire questions for you, both.
Athena Flicek: Okay.
Brianna Miluk: So, the idea behind this is that you just answer with either like one word or just a short phrase. So, you do not, I don't want you to elaborate, just like whatever comes to mind.
Okay. All right. So, I'll start with Cuyler for this first one, and then Athena, you can answer it as well. So, what is a book that you think every feeding therapist should read? And it doesn't have to be directly feeding, you know, it could be like, I have a book in my brain that I think everybody under the sun should read. So.
Cuyler Romeo: Oh, I'm just so ingrained in my bibles of feeding that I had, you know, from the time that I was a student, which is Wolf and Glass, the purple, the Bible of infant feeding, and of course Marsha and Suzanne's book Pre-Feeding Skills. But if I am, gosh, If I'm going beyond, beyond that thought process gosh, I have quite a few inspirational books that I li- I read about.
Brianna Miluk: Yeah.
Cuyler Romeo: The lived experience, but I have to tell you, they're like, they're religious in nature. So, I'm gonna stick with my pre feeding skill and my purple book.
Brianna Miluk: Okay. I love it. Athena?
Athena Flicek: Mine is The Out of Sync Child Has Fun. I love that. Cause it's like you can bring that into feeding and like Ari has a sensory processing disorder, which a lot of kids that have PFD have like, you know, something going on different. So, I just, I, I love that book. It's got a lot of good ideas that you can take out and do from, and yeah, it's just make it fun.
Cuyler Romeo: Well, I should pull things off my shelf. I'm like, Oh.
Athena Flicek: I was gonna say, otherwise I'll be reading some murder mysteries. Cause PFD sometimes feels like a murder mystery.
Brianna Miluk: You are like a detective, like a dysphagia detective.
Athena Flicek: What are these clues telling me and how do I figure out the problem? And my therapist is telling me, you're not a doctor. That's not your job. I'm like, thank you.
Cuyler Romeo: Love it. Love it. Oh gosh. So, I really literally am sitting right here at, at my bookshelf, and I could just pull all of these books and just show you like one after the other. I mean, I have like, you know, 40, 50.
Brianna Miluk: Yup. Uh huh.
Cuyler Romeo: Books that are sitting here.
Brianna Miluk: I love it. I love it. My book, just so you all know, if you haven't read it, I highly recommend everyone reads the book Think Again by Adam Grant. Just. It's, it's so good. It's about like the power-
Cuyler Romeo: Oh, I'm gonna put it on my list.
Brianna Miluk: Yeah. It's about like the power of like rethinking your beliefs and not being afraid to challenge them in the face of new information and just, it's incredible. I also love this podcast rethinking, but the book is, it's topnotch. Okay, here's your next question, Athena. You're gonna go first for this one. What's your favorite type of food?
Athena Flicek: Greek food. Does that even have to be answered? I was born in Greece. I lived there until I was nine, and everyone should eat Greek food. Love Greek food, obviously.
Brianna Miluk: Cuyler, what's yours?
Cuyler Romeo: Okay, I, I really struggle with this question. My children love to ask me this question, like, what's your favorite food? What's your favorite meal? What do you know? What can we cook you? Cuz my kids are very independent little chefs and everything. I have the hardest time even picking a genre.
Athena Flicek: Mm-hmm.
Cuyler Romeo: You know, I'm gonna say Thai.
Brianna Miluk: That's my favorite.
Cuyler Romeo: Yeah. Okay. I would always think if there's only one
Athena Flicek: and it's ok, it can change. That changes for Cuyler she takes the longest at restaurants when we go out to eat to pick, what are you getting? Well what are you gonna get? Well, what are you getting?
Brianna Miluk: That's funny.
Cuyler Romeo: And I eat bites of everybody else's food.
Brianna Miluk: Yeah.
Cuyler Romeo: Can I just have a taste?
Brianna Miluk: Well, yeah, I'm definitely not picky by like genre of food, but like if I had to pick one. It would be Thai. I love Thai food. Okay. Last one, and then Cuyler, I'll go back to you first. What is one word or short phrase you would say to describe Feeding Matters?
Cuyler Romeo: Hmm. Innovative, family centered and a change agent.
Brianna Miluk: Love that.
Cuyler Romeo: Mm-hmm.
Brianna Miluk: Athena?
Athena Flicek: My two words were compassion and change.
Brianna Miluk: I love that you both really went around that, that like change theme, right? And like that is, that's the goal of it. That's what we've started talking about was like system change and how we can, you know, support change in the right direction for children and families with PFDs.
So, thank you. Okay, so to kind of wrap things up, I would like you all to share when is the next conference? What's the call for papers? Hint, hint. Caregivers, we would love to have you do a lightning talk. Let's start there. Let's start with just conference. What's coming up? When's the call for papers due and all of that?
Athena Flicek: The conference next year is April 25th and 26th. There are no other conflicting activities, anyone. So, sign up.
Brianna Miluk: Save the date now.
Athena Flicek: Save the date. April 25. April 26th and Pre Con April 24.
Brianna Miluk: Perfect.
Athena Flicek: We changed; the cover papers is opened right now. It opened on, what day is it? June 15th. It goes to August 15th.
Brianna Miluk: Okay.
Athena Flicek: So, we changed our format, which is super exciting. We had a, we heard back from our audience, so it'll be still our amazing five-minute Lightning talks. We have a new, brand new 20-minute pre-recorded session, so we're super excited for that format to go through. And then we've changed our, our longest one is now a 45-minute period core with a 15 Q&A. So just an hour cap on that. Cause you realize people have a lot to do. They want their information in smaller bits. Shorter pieces. And so, we're really excited about those. And we're looking about.
Brianna Miluk: I love that.
Athena Flicek: We're thinking about diversity. So just all parts of PFD.
Brianna Miluk: Yeah.
Athena Flicek: And students Submit your work. Students submit your work. Researchers come in here. Families. Let's see it.
Brianna Miluk: Yes.
Athena Flicek: We're excited.
Brianna Miluk: I love that. I'm, I'm really excited about the change of format too. Cause I think it opens it up to more topics to be talked about as well, because you're not just having a bunch of really long sessions. It's like we can add so many more topics of discussion. So, I'm really excited about that. Okay. Second question. How can people get involved with Feeding Matters? Where should they go? You know, if they wanna sign up to volunteer some of their time.
Cuyler Romeo: Well, people can participate at any level. So, the Pediatric Feeding Disorder Alliance is like where this work is done in the committees. As Athena's talking about con, we have a conference committee, a pre-con committee, a digital outreach committee, and then we tap into our volunteers for projects that are occurring behind the scenes all throughout the year. So, this is not representative of even close to being a representative of all the work that these volunteers do.
The best way is to sign up to be a volunteer. Yeah. If you go to the website Feeding Matters.org and you look at the top, the green tabs, there's one that's just tabbed get involved, go to that tab and take a look at how to sign up to be a volunteer. Our volunteers go through a formal onboarding. So, there is a process so that you're really well oriented to the organization and you're vetted.
Because our volunteers do amazing work and we want them to feel supported, we also have an open call for leadership. So, I'll, we had our open call recently and it's just closed, and we'll be slating our committees and our leadership, but you can submit your interest in serving as a leader at any time.
And we save that information and during the next open call we revisit it to look at who has submitted their information. But I would say also just sign up to be in the Alliance when you sign up to be in the Alliance. Completely free. No membership fees. It connects you to Feeding Matters through communication.
A majority of our community is at large members. That means they receive our newsletter, they receive email blasts of events, and the best way to participate is first just opening your email, reading your newsletter, staying informed at the grassroots level. If you wanna be more involved and more tapped in, you can also download our free app.
So, this was something that was new last year, is that we did launch a free pediatric Feeding Disorder Alliance app. So, you can go to your app store if you're still Android, like me in an Apple community, you can find it for Android or Apple. Just go to your play store and put in the words Feeding Matters Pediatric Feeding Disorder Alliance, and you can join that.
And that allows you to connect and chat with professionals and families. And then we also have protected groups. So, there is a group that's just for families so that they can share openly as well as one for professionals too. So those are some ways to stay connected with what's happening.
Brianna Miluk: Awesome. Thank you. That's so helpful. And that kind of goes into my last question, which was, where can people find Feeding Matters? So of course, the website Feeding Matters.org. And then Feeding Matters is also on Instagram. So, you can find them @feedingmatters. Is there anything else I'm missing in terms of where, where to connect or, or find?
Cuyler Romeo: We're on Insta, we're on Facebook, we're on Twitter. So, all your social media channels we're on as well. And we also have a YouTube channel that does have some great videos that you can use in your community. So, everything that is on the website is on YouTube posted on social. We want people to use. It's open access to everyone.
Brianna Miluk: Awesome. Great. Well, thank you both so much for being here and chatting with me. I, it was such a pleasure. I mean, beyond a joy to talk through it. I know all three of us could talk for hours on this topic, and so it, it was, you know, super, super fun to have you both and I thank you so much for what you do for the PFD community and giving back so that, you know, professionals and families can feel supported, feel empowered, and To make system change because like you said, ultimately that's, that's the goal and that's where we're gonna see progress if we wanna see change. So, I appreciate you both and.
Athena Flicek: Thank you Bri, for having us. You're amazing.
Brianna Miluk: Of course, of course. Thank you. All right. Enjoy the rest of your summer. Bye. Bye.
Thanks for tuning in to the Feeding Pod this week. If you enjoyed today's episode, please don't hesitate to share this podcast with your friends and colleagues. And leave us a five-star review wherever you're listening from. If you're interested in learning more about pediatric feeding and swallowing, be sure to follow Bri, me, on Instagram @pediatricfeedingslp, or check out my website where you can get access to more courses and information, www.pediatricfeedingslp.com. Again, thanks for being here and listening to my ramblings, and I hope you'll keep listening. Until next time, cheers.
Resources:
- Concensus paper: https://www.feedingmatters.org/wp-content/uploads/2020/11/2019-01-JPGN-PFD-Consensus-Definition-and-Framework.pdf
- ICD 10 Codes resource:
- https://www.feedingmatters.org/toolkit/
- https://www.cms.gov/files/document/2021-coding-guidelines-updated-12162020.pdf
- Wolf and Glass (Feeding and Swallowing Disorders in Infancy Assessment): https://www.amazon.com/Feeding-Swallowing-Disorders-Infancy-Assessment/dp/0761641904
- Marsha & Suzanne’s book (Pre Feeding Skills Comprehensive Resource Development): https://www.amazon.com/Pre-Feeding-Skills-Comprehensive-Resource-Development/dp/1416403140
- The Out of Sync Child Has Fun: https://www.amazon.com/s?k=out-of-sync+child+has+fun&hvadid=580689120955&hvdev=c&hvlocphy=9001847&hvnetw=g&hvqmt=e&hvrand=10753574635851053510&hvtargid=kwd-3939256710&hydadcr=15525_13517362&tag=googhydr-20&ref=pd_sl_6q00gkt9he_e
- Think Again by Adam Grant: https://www.amazon.com/s?k=think+again+book+adam+grant&i=stripbooks&hvadid=604486423404&hvdev=c&hvlocphy=9001847&hvnetw=g&hvqmt=e&hvrand=14435122972669240325&hvtargid=kwd-1063487923426&hydadcr=22567_13493270&tag=googhydr-20&ref=pd_sl_tinjpjbid_e
- Feeding Matters Volunteer: https://www.feedingmatters.org/get-involved/volunteer/become-a-volunteer/
- PFD Alliance Volunteer form: https://www.feedingmatters.org/alliance-structure/
- Feeding Matters IG: https://www.instagram.com/feedingmatters/?hl=en
- Feeding Matters Twitter: https://twitter.com/feedingmatters?lang=en
- Feeding Matters YT: https://www.youtube.com/user/FeedingMatters
