Why Social Determinants of Health Matter in Feeding Therapy
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 in outpatient or via tele practice.
I'm also an instructor at the university level and a PhD student studying communication and information science. 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. I am here today with Stefanie LaManna and I am so, so excited to have her on. Stefanie is a friend of mine and after reading her piece that she put in the ASHA leader on social determinants of health to consider at NICU discharge, I was like, no, we need to talk about this more.
We, we need to talk about this more. So, I am really excited about this. I'm going to toss the mic over to Stef to kind of give a quick intro. She is a pediatric feeding therapist and obviously has some insight, insight from the NICU and beyond. So, Stef, why don't you give us like a quick intro of who you are, what you do, a little bit about yourself.
Stefanie LeManna: Sure. Thanks, Bri, I'm so excited to be here and talk about a topic that is so near and dear to my heart and that I'm passionate about. So, I'm Stef LaManna I'm an SLP, I'm a certified neonatal therapist. I've been practicing basically across like the entire pediatric service line for the last decade.
I've worked in outpatient, inpatient, NICU, ENT clinic. I love FEES, I love airways. And right now, currently I'm lucky enough to be one of the associate directors on the healthcare services team at ASHA. So, I'm also getting to, you know, spread my knowledge and, and create some resources for other pediatric feeding therapists, just like me.
Brianna Miluk: Awesome. Yeah. I am so excited to have you here. You are such a treasure to the field and for those of you that don't know Stef in any capacity, many of you have probably received emails or seen her in like this Sig 13 community threads, you know she's just an amazing human overall, so I'm just, I'm so excited to have you here.
Okay, so let's, let's like dive into this. I am really excited, as I said about this topic. Both Stef and I are very passionate about this talking about social determinants of health and how this really influences patient care. And we also both agree that this is a super under discussed topic. It's not brought up a lot.
I can even think of people who are like, social determinants of health. What, what does that mean? What does that term even stand for? So why don't you start there? Why don't you kind of give the audience an explanation of like, what are social determinants of health? Exactly. Like what does that mean when you use that term?
Stefanie LeManna: Sure. That's a really great question and it brings me back to this time last year I was helping moderate some of the sessions for ASHA's first healthcare Summit and one of the, one of the questions I had asked the presenters was, you know, how do you incorporate a patient's social determinants of health into your plan of care?
And they both just stared at me and it was like, crickets. And they were like, their what? And I was- so you know, I, I explained it of course, and it just really opened my eyes to lots of people don't even know what that means. And it is a big, fancy term for things that you- everyone definitely knows, right?
So social determinants of health are basically the circumstances in which we live, we play, we work, we, you know, practice religion that sort of influence our everyday lives. So, some of those examples can be the environment in which you live in. It can be your access to education, your access to healthcare.
It can include, you know, access to fresh water and clean living. So yeah, our social determinants of health are, are really those factors that then influence outcomes for us. And social determinants of health are not positive or negative. They're just kind of neutral.
Brianna Miluk: I think the last part you said, you know, it's not necessarily in this like positive or negative light.
I'm so glad you brought that up, cuz I think oftentimes social determinants of health are thought of as being a negative light, as if it's a lesser than thing. And while some of them are related to barriers in access, some of them are facilitators or some of them are what helps our clients. And a lot of them are just things that are neutral either way.
However, they can become positives or negatives, so like benefits or facilitators, depending on how the clinician approaches them and the clinician's awareness of them.
Stefanie LeManna: Absolutely 100%. I think, you know, a good example of this is maybe a family that is, you know, privileged, right? They live in a great town; they have access to lots of resources.
They have the financial ability, you know, to access healthcare. And a family member gets into, you know, a really significant accident or something and they have a brain injury or they have a significant illness and now they are even though they have access to all of this stuff, they've lost their job.
Maybe they don't have strong community relationships. So even though you think that that person would thrive you know, whereas maybe someone who is living in a less desirable area or you know, experiences more difficulties financially might have better community support where they're able to overcome some of these barriers.
Brianna Miluk: Yeah, absolutely. And I think that's a, a good point to bring up as well is sort of how they can overlap. And it's not all areas that are, you know, barriers to access to care. Some might be a barrier, but if another one is, you know, in a more positive light, like maybe we have the barrier of educational status or, you know, decreased health literacy, but if we live in a neighborhood and have a supportive home environment that can help meet those needs, or we have- live in a community that has good access to quality healthcare, then it can kind of offset some of those other barriers. And so, it really is like a balance and, and just figuring that out and, and knowing the, the client and the family.
Stefanie LeManna: Sure. You know, I, I think a good example of this is in the article that I wrote for The Leader and we gave this kind of fictional case study that. Was certainly fictional, but drawn from, you know, my experiences working in the NICU and just things I've come across and families I've worked with. And you know, you can have a young, a set of young parents who are 18, 19 years old, maybe don't have that educational piece, don't have that health literacy necessarily because they're so young.
But they have a grandmother who is a nurse and, you know, she's able to help them get to their appointments and understand and you know, help them understand their baby's medications and help them understand, you know, why their baby needs certain appointments and things like that. So, Again, they're neither positive nor negative, they just are.
But they can create a barrier for some of our patients.
Brianna Miluk: Yeah, definitely. And I think that kind of, you know, your example is gonna help sort of segue into this next piece, which is really talking about how do social determinants of health apply to pediatric feeding disorders? And so how do we have a role there?
You know, even starting out from, from birth, right? So, so thinking about the NICU setting, which is really where, kind of like your piece where you were discussing NICU is like, okay, NICU discharge, but some of that really starts in the NICU care. So why don't you shed some light on sort of how these play a role in pediatric.
Stefanie LeManna: Sure. Yeah, I, there's a couple different ways I wanna go with this, and I have two thoughts. First and foremost, one of the first things I got to do for ASHA when I started working there a year ago was review Cheryl Hersh's podcast that she did on social determinants of health in, in pediatric feeding.
And, you know, there's this one statement she makes that blew my mind and Bri you know, exactly what I'm gonna say. But she talked about how they would make recommendations for children to practice with like meltable crunchies and these foods weren't even on the SNAP benefits or as we know them, food stamps on the benefit list.
So, they were recommending these foods for families that they couldn't purchase and they couldn't otherwise afford. And that just like blew my mind. I was like, somebody said it out loud. And, and that's incredible. And I think that's one of the places where we can make the biggest impact in pediatric feeding is understanding, you know, what our patients need, what their access to resources are, how they're able to get them, what do they, what other resources do they need, and how can we facilitate that and how can we just be aware of those barriers.
There are so many foods that children can practice with. If you just have a general idea of what's on your state's SNAP benefits eligibility, you can make some recommendations. But if you don't even know that you need to be aware of that, then your family's gonna feel like they're the ones who failing, who are failing when really it's us putting them in a situation that's more challenging for them.
Brianna Miluk: Yeah, I agree with that. And I think just like even within that you know, as you learn more and more about this and learn more and more about the resources that are available to families and the, you know, restrictions that may be there, I have found, for example families that are using SNAP through WIC, the Women Infant and Children program.
It is one of those things that at 12 months old, they no longer get access to baby foods like purees. And, you know, taken off it, those things are taken off the list. And so, in this situation, if you have a child who's 12 months old, 13 months old, 14 months old, who is still on purees because of an oral dysphagia, now the family can't afford those types of foods.
And so yes, that we can do some education on like home blending and working on that, but there are also resources to be aware of where you can get a script written to extend their coverage past 12 months old. So, there are resources around that, but a lot of it just takes, you know, us as the clinicians taking the time to recognize that's there and then helping the family advocate for those modifications.
And really it does, it starts with exactly what you said, like just being aware of
Stefanie LeManna: Yeah.
Brianna Miluk: Of these barriers.
Stefanie LeManna: I think one of the other things is, and, and this brings in cultural responsiveness as well, right? And I can give you a really good example of this. I'm lucky enough to still be able to work clinically and I work I work in a level three NICU in a community hospital.
And in this hospital we are in a predominantly white, predominantly upper middle-class neighborhood. So that's, you know, sort of the, the patients that that we get. And a lot of our staff has worked at this hospital for their entire careers. It's a really nice hospital to work at, why wouldn't you wanna stay there?
Right? And our hospital system a couple years ago merged with another hospital system that has a smaller NICU in an underserved community. And we now get a lot of those transfers of those smaller and sicker babies to our unit. And some of the reactions from staff in terms of the barriers that these families are facing at discharge.
Was shocking to me. Like I've worked in a lot of different communities and you know, some of these people who have never experienced what it's like for patients to have barriers. And, and the way that their biases just came through was, was really shocking. You know, and, and they would get frustrated like, what do you mean they don't have access to this bottle?
What do you mean that they can't get this type of formula? What do you mean the parent doesn't know how to read the directions on the formula and we need to, you know, create a visual for them? And I feel like as SLPs, you know, we think about that stuff, a lot of that ti- a lot of the time, but it, it gives us an opportunity to take it a step further for our patients and kind of almost anticipating their barriers and helping them work through it?
Brianna Miluk: Mm-hmm. Yeah, definitely. And I think that also is where we play a role in like advocacy and educating other providers as well.
I think the NICU is a big one where, and, and I've never worked in the NICU, but this is, you know, thinking about talking with colleagues that do, and one of the big ones is the, you know, oh, they never visit their baby, they just don't care. They never come here to visit. They're never here for feedings.
You know, and it's like this baby was born premature. They don't have, you know, you know, maybe good maternity leave. Maybe it's a very short maternity leave. And so, they prefer to hold on until their baby's home to be able to use that leave. Like there's just so many implications there. Or if they don't work, they lose the insurance to pay for the medical treatment so that their child can receive better services in the end.
And like there's, I feel like that's a big one and that's one that I've seen in the home health and outpatient setting as well, specifically in the outpatient setting. When you have a client, who has difficulties with transportation, and, you know, they are relying on the Medicaid service to pick them up, which they have to schedule ahead of time, which is a whole process in and of itself.
And then Medicaid will drop them off at their appointment and be like, all right, see you in three hours. And they're like, the appointment's only 45 minutes. It's like, well, we have to do a couple other things. So, you now have to be here for three hours. And they don't have three hours to take off work.
They don't have three hours of childcare for their other children. And it's like, we forget that, that, like, maybe that's why they're not coming to therapy except for once a month, because that's all they can afford to do. Because of that, that example. But then it goes into the, the, the implicit bias and, you know, the, the prejudices that then occur in prejudging people without fully actually understanding their situation. And, and bridging that gap and supporting them in that, in that manner.
Stefanie LeManna: We had a situation one time in my NICU where we had a smaller baby who was getting ready to eat for the first time, and we always try to a). Have the first feedings at the breast b). Have the parents present if, you know, regardless of whether the baby was breast or bottle feeding, and have it be kind of like a joint effort between speech, parents, nursing, everyone working together IBCLC if the parent was breastfeeding or chest feeding and the, this particular family couldn't come in because they had barriers related to transportation. They didn't have a car. One of the parents borrowed a car from a family and, you know, was able to get back and forth to work with that.
They didn't really necessarily qualify for transportation assistance. And I remember talking at rounds and, and everyone was like, well, like, why don't we just have speech, feed the baby for the first time. Like, this mom's not giving breast milk like the baby's getting formula. So, like, it really doesn't matter.
And I was like, wait, everyone, hold on a second. You know, and it took me a long time to get comfortable speaking up in these situations and I think that's fair to mention, right? Like this was a couple years into my career, I was comfortable with these people. So, it's not always easy for the first time, right?
But at this point, you know, I was kinda like, there's gotta be something better we can do here for this family. And one of the things that I had mentioned in my article about a tangible resource you could just like kind of take back to your hospital or whatever setting you're in, is reaching out to your hospital's charitable foundation.
Most hospitals will have one, even your small community hospitals. My hospital's not that big. We still have a very prolific charitable foundation. So, we went to them and we got a couple of ride share gift cards. So, parent was able to come. You know, during the day. And we set up this was pre pandemic unfortunately, but we set up Child Life with the older sibling and we had this mom bottle feed her baby for the first time.
And it took a little bit of work, you know, to, to get through some of these barriers. But it worked out and it worked out really well, and honestly, like it wasn't really that hard to do. So, I think just recognizing, you know, where these sort of factors are and how you can bring them to others' attention.
Right. As an SLP, we're not responsible for solving every single barrier for our patients. We just can't, a). It's not necessarily, you know, our our responsibility to do so and b). You know, we don't always have all the resources to do that on our own, but by bringing them to others' attention, we are able to get the entire team on board to help.
Brianna Miluk: Definitely. And I think that like, Doing something like that where it's like, yes, this took me a little bit more time and a little bit more effort. Not excessively, I just had to really bring attention, draw attention to the factor. But by doing so, you probably strengthened your rapport and trust with the family so much more than had you said, Hey, your child had their first feeding.
Here's how it went. We'll talk to you about it when you come in. That would've lost trust. And you know, especially after covid with the levels of mistrust that are in place with healthcare, we need to pay even closer attention to how we are building trust with the families that we're working with.
And small things like that. Like waiting 6, 12, 24 more hours before you, 48 more hours before you do that first feeding so that the family can be there can be so powerful. And so, I think that, that, you know, really, really is a testament to, to facilitating a potential social determinant of health barrier.
And so, I think that's, that's a great point to make. Okay. I wanted to talk a little bit about, so we think about social determinants of health. I kind of wanted to go through, and this is gonna be my like, rapid fire question round for you, and then I wanna talk about some more case examples.
However, what I wanna do for your, this is something that I just do randomly when I remember to, if I'm being honest, I would like to do a rapid-fire round with everyone, but sometimes I forget. So, your rapid-fire round is where I am going to, I'm gonna basically just fire a question at you. And I want you to answer in just like a couple words or a sentence in what kind of comes to mind.
All right. So in regards to social determinants of health, if we're thinking about education access and quality, what is the first thing that comes to mind for you in a way you can support families who may have decreased educational status or health literacy?
Stefanie LeManna: Asking them how they prefer to receive information.
Brianna Miluk: Oh, I love that. And I feel like that's just, that in of itself is like, you're just like, how do you prefer information? It's not like, what's your level of education? There's no judgment in it at all. It's just how do you prefer to learn, you know? I think that's a great way to answer it. Okay. Next question.
What is something that you have implemented with like your patients or your families in your assessment or treatment approach to learn more about a patient's social determinants of health status?
Stefanie LeManna: Ooh, really good question. So, I will often ask them how difficult scheduling is for them, and that's sort of like a neutral question that can give me a little bit more information about what's going on in their lives.
And then I can sort of probe a little bit further if scheduling's really challenging. That kind of opens the door to asking other questions about transportation, what their family life is like and, and what things are like at home.
Brianna Miluk: Mm-hmm. I think that's a great question too, from a culturally responsive lens in terms of just like how they view the importance of appointments, timeliness, working around different, like prayer times or, you know, maybe they have church things on Wednesdays.
And so, you know, I think that opens up even more to that conversation as well. I love that. So next one that I have for you is what is something you've learned about client food choices or food access through your practice, and how has that maybe modified the way you approach making selections about food moving forward?
Stefanie LeManna: Ooh. Well, I think one of the bigger things that I've learned, you know, over the last, like very few recent years is that I need to check my understanding of what food choices are and not impose that upon my clients or patients.
Brianna Miluk: Mm-hmm. Mm-hmm. Yeah, I think that's big. I think food is, You know, and when we think about pediatric feeding disorders, like there's a psychosocial domain for a reason.
It's not just for nourishment. There's a lot of other factors that go into play there. So, I love that answer.
Stefanie LeManna: I also will ask parents, a, I used to always buy food for clinic, and I still do just to have stuff in case like a parent forgets or they can't get access.
But when I'm walking down, you know, the, the grocery aisles, I'm picking out what I like. And even though I try to think about it, you know, to have a lot of variety, I can't, I can't anticipate every single patient or family's preferences. Right. So, I always ask them if they're able to, to bring their own food so we have access to their preferences.
Brianna Miluk: Mm-hmm. Mm-hmm.
Stefanie LeManna: Now, that's not always reasonable and something that every parent can do. But I always give them the option and ask them how they can- I can support them in doing so.
Brianna Miluk: Mm-hmm. Yeah, I think that going off of family and client specific food choices that are relevant to like what they're eating at home, what's most accessible is also a great way to like support carryover and generalization of your recommendations.
Because if they don't have access to the thing you're recommending, then it really isn't necessarily going to to help anything.
Stefanie LeManna: Right.
Brianna Miluk: Okay. The last question is who, who do you feel like in your or not, not necessarily who but who or what or you know, is there a resource or a person where you would suggest people go to, to learn more about social determinants of health?
Stefanie LeManna: I am gonna give a little plug for my team here. And I'm gonna say that check out ASHA's resources on social determinants of health. So, we don't have, you know, a plethora of resources just yet. But we're starting to build them up and it's a huge priority for our team this year. So, you can look at our website, which includes some of that information.
And Bri can you drop a link somewhere for that?
Brianna Miluk: Yeah, yeah. It'll be in the show notes. I'll have the link to
Stefanie LeManna: Perfect
Brianna Miluk: to all of the things we've talked about today, including that podcast episode with Cheryl Hersh, which was, was also very excellent. I really appreciated that as well. And I'll drop a couple other links that talk about just some resources, some articles that talk about these impacts and one of them would be feeding matters have like an economic impact report that came out and, you know, that can really fluctuate into there. So yeah. Awesome. Okay.
Stefanie LeManna: I think that's perfect. Healthy Children 2030.
Brianna Miluk: Yeah.
Stefanie LeManna: Is also a really great- Or is it healthy children? Or Healthy families? Whatever is.
Brianna Miluk: Yeah. Healthy chil- I think it's Healthy Children 2030.
Stefanie LeManna: Yeah.
Brianna Miluk: Now I wanna look it up. Yep. Maybe just families, but I thought it was Healthy Children.
Stefanie LeManna: I thought it was Healthy.
Brianna Miluk: Healthy people.
Stefanie LeManna: Healthy people.
Brianna Miluk: People.
Stefanie LeManna: Perfect.
Brianna Miluk: Everybody. All people. 2030.
Stefanie LeManna: Yes. So Healthy People 2030 is the US Department of Health and Human Services website that talks about social determinants of health.
So, you can learn a lot there.
Brianna Miluk: Mm-hmm. Yes, definitely. And I think so much of this is literally starting out with just, just learning about it because like Stef said, like she asked a question one time and someone was like, I don't even know what you mean by social determinants of health. And it, once you learn what it is, you realize, oh, this is like literally your day-to-day living and what affects you accessing healthcare from where you work, where you have fun, where you live, like all of these aspects.
So, you probably know more about it than you realize, and hopefully you're starting to reflect on some of these things and like, oh, that happened in my practice. But definitely just start with learning about it. Start with with learning the term, maybe coming familiar with those barriers and facilitators.
Okay. So, we're gonna transition into this last part where I would love for you to share and, and of course I'll do my own little reflection on case examples of where we might see this into play. So, why don't we start with your case example, talking about thickeners. I am really excited to see how this plays a role.
I know I kind of know how it plays a role, but I want you to explain how it plays a role to the listeners.
Stefanie LeManna: Yeah. So, thickening the bane of our existence. This is a really great question and um, you know, I, I don't have a specific case example in terms of like this happened, but I have a couple different thoughts and like what I can pull from, from my patient experience. So.
Brianna Miluk: More so how it can apply to like, other people's cases.
Stefanie LeManna: Yeah, exactly. Yeah.
Brianna Miluk: Mm-hmm.
Stefanie LeManna: So, thickeners are really challenging for a number of reasons, right? We know that the literature is very mixed on thickening. You know, there's a lot, especially coming out in the adult population about how thickeners affect not only quality of life, but they affect nutrition and hydration, and they're, you know, more likely to be silently aspirated.
And, you know, we know that thickening is not always the way, as you know, maybe it was 3, 5, 10 years ago. So that being said, we do know it is important sometimes for some of our patients. And one of the things we do in, in the clinic where I work is we will sometimes thicken to manage reflux symptoms for babies who are having real, really severe reflux.
So, you know, with thickening comes this risk benefit analysis all the time. And in this context, I'm not just talking about clinically. You know, I think we need to look at it from the perspective of the family. You know, couple different things. We know that rice cereal is like off, you know, the table now because of the arsenic risk.
Oatmeal cereal is not great for nutrition and constipation and, and all of that. And it adds a lot of really empty calories for very little nutritional value. Our commercial thickeners gel mix, you know, any of those are expensive. They're what now? Almost $30 a can?
Brianna Miluk: And it's so hard to get insurance coverage on them.
Stefanie LeManna: I've never had success with an insurance company covering gel mix.
Brianna Miluk: Yeah, it's so difficult.
Stefanie LeManna: So, for our families who, you know, may have benefits through their work, if they can afford to have an FSA, the FSA, you know, can cover it, but. Not many of our patients or families have that. You know, and there's a lot of really great resources out there in terms of helping families get access to thickeners. Dysphagia outreach project, you know, helps families with that.
Bri, do you know of any others?
Brianna Miluk: I mean, we have one locally in the upstate, the Pediatric Feeding Disorders Foundation.
Stefanie LeManna: Yeah.
Brianna Miluk: But it's going to be like, it's specific to a local community, so, you know, being able to, I think, be more familiar with not just like Dysphagia Outreach Project that's nationwide, but also like recognizing there maybe local resources to help with it.
But again, like the process of going through those and submitting the paperwork and getting all the things signed and all of that, like to justify why you need the funding for an item or why you need the thickener. Can also be a barrier for a lot of families.
Stefanie LeManna: The biggest question is can your, can your families read the paperwork
Brianna Miluk: right
Stefanie LeManna: that they need? Do they have internet access?
Brianna Miluk: Right. Can they access to even the website to even apply?
Stefanie LeManna: Right. Exactly.
Brianna Miluk: Mm-hmm.
Stefanie LeManna: You know, and, and I think even for families who may have the financial means, right? Because we can't draw these parallels between health literacy, educational access, and financial access, right?
Or financial stability. Like they're not all congruent. But, you know, your patient may have the financial needs to be able to pay for, you know, gel mix, a one can a month or something like that. But, do they have the educational understanding of what it is? Can they access buying it online? Yeah. It's on Amazon.
We think of Amazon being super easy. Right? But is it easy for them? You know, do they know how to read the instructions on the can? Are they sure they're buying the right product? Like, that's another big thing. So, it's not just the financial access to it, it's, it's all the other pieces that we have to consider.
Thickening isn't just a clinical recommendation. And you wanna weigh that against your patient's individual contextual factors, you know, that contribute to do they need the thickener or not.
Brianna Miluk: Mm-hmm. And I think, you know, it's, it's like what we've kind of come through to and like what this, you know, the conclusion of this is, is like, it's not even just a question of whether to thicken or not.
It's also a question of like, what thickener choice do you make? And, you know, maybe the family can afford some commercial thickener and the rest of the time you're also using food-based thickeners because that's what's accessible. That's what they have available. And so, you're not just looking at it, like you said, from the clinical lens of like safety, contraindications, amount, you know, all of those risks.
You're also thinking about like, is this even accessible and affordable to this family? Because if it's not, they could want to do it as much as they, you know, can, but they can't afford it. Or because they're having to do this thickener, they can't come to as many therapy visits because they can't afford the transportation there now because they're having to pay for the thi- like there's so many layers to those singular decisions. And so, it's really important to think about that when we're making those recommendations. But then, like you said you know, just like using the resources we can when they are available to help offset some of that.
Stefanie LeManna: And I love the you know, what you brought up about using a commercial thickener part of the time and food-based thickener, you know, other parts of the time.
And I think, you know, if you kind of even, even break it down further than that, like you have to even consider can your patients follow directions for two different things. Food-based thickeners are not cheap. I don't know if you've bought Gerber baby food lately, but I have. And it is expensive. These costs add up and, you know, even for, for the families who don't have any, you know, financial difficulties or, or are able to afford some of this stuff, those costs add up.
When you add in copays, when you add in other supplies, we are most likely not the only service that a child needs. Especially if we're talking about our post NICU population you know, copays for other visits and cost of travel, it all adds up. You're absolutely right that thickening is not just a singular clinical decision.
Brianna Miluk: Yeah, and I think too, your point about like food-based thickeners being more expensive, like having, I mean all of it has expenses, right? All of it is in addition to what the family was expecting potentially to have to afford, right? Just in terms of like the food and liquids they expected to buy for their child.
Now they're having to buy extra in order to, you know, support their child's oral pharyngeal dysphagia status. And there's a quote from an article by Okada and colleagues that came out in 2022, and they also talked about how a commonly reported barrier, and I'm, I'm quoting this directly, so "commonly reported barriers to using assistive programs included desire for self-reliance, lack of knowledge, or worry regarding paperwork, stigma, and concern over ineligibility."
So, these families who are having trouble affording a food-based thickener, which can be covered by WIC through the SNAPS program. Might say, might not even do the program because they are afraid of completing the paperwork of being reliant on some type of support system because of this stigma or feeling about it.
And so, you know, it can also be easy for us to be like, well just go do this thing. You can get SNAPS, you can get coverage, and there might be cultural factors there that are preventing them from seeking outside help. And so sometimes it also is like bridging that piece. And so, it's like, yes, we're sitting here saying like, those things are expensive and they are, and if a family can't afford them, they might not even want to seek the resource to be able to, and then that's a whole nother, you know, layer that you kind of have to work through.
Stefanie LeManna: I think it also, you know, kind of blends us into the point of the, the mental health impact that a pediatric feeding disorder has on a family. And I think a really good example of this is a patient that I saw yesterday, you know, baby girl born at 34 weeks gestation. And she you know, had a little bit of a rougher course than most babies born at that age typically do.
And she ended up leaving the hospital with an NG tube a and our feeling was that she just needed a little bit more support for a, a little bit, you know, longer period of time that she eventually was gonna be okay. And there were a couple weeks that lapsed in between when she left the NICU and when she came in for her appointment and her tube was out and she was eating great and she was doing really well, just like we had expected.
But she was still a little lower tone than I'd like to see for that age. So, I talked to her parents about making an early intervention referral, right. And like, we look at earlier intervention as so benign, like right?
Brianna Miluk: We look at it like everyone should get it. We're like,
Stefanie LeManna: everyone should get early intervention
Brianna Miluk: intervention is great for everybody.
Stefanie LeManna: Yeah. Yeah. And in the state of New Jersey I'm just not sure. I don't primarily work in early intervention, so I can't speak to you know, what the eligibility requirement is in other states, but in New Jersey, they don't correct for prematurity, so everyone qualifies, which is really, or at least all preterm infants will qualify cuz they're always gonna be behind when you compare them to their actual age.
So that being said, you know, I'm kind of explaining this to the parents and they're like stopping making eye contact with me and they're like, you know what, like, we kind of really wanna hold off on that. And in the moment I was perplexed because I was like, okay, like, you know, I picked, I was picking up what they were dropping off.
So, you know, I, I kind of said to them like, all right, like, you know, we have a follow up appointment in two weeks to check on you guys again. Why don't we see where we're at at that point? And, and we'll kind of discuss that. And they were like, yeah, you know what, that sounds great. And after they left I kind of thought about it a little bit more and it made me really think about, you know, what did they experience in their NICU stay and then after discharge where their entire understanding of what a normal pregnancy is, what they were expecting for birth was completely shattered. Their baby was in the NICU for six weeks. The interprofessional team comes in and tells them that their baby needs to go home with a temporary feeding tube. And even though we're telling them that, I think your baby's only gonna need this for a couple weeks.
They just need a little bit more time. They're gonna be totally fine. They stopped listening after they heard your baby needs a feeding tube, right? So, they take their baby home, they're living, they're petrified of managing this thing, even though we've trained them, they're terrified of managing it. And then they finally get past that.
And then somebody with all the really great intention in the world is saying, you know what? I think your baby needs some more help. Like, what does that do to that family? So even when we're, you know, bringing up like, oh, you know, you can access this resource and, you know, go to go get SNAP benefits and this and that, and they'll cover this and they'll pay for this.
You know, parents stop listening and all they're thinking about is the mountain that they're at the bottom of, and how overwhelmed they are by all the barriers that they face that they're not even aware of, and that they don't, they, they can't even begin to think about overcoming because they don't even know what they are.
Brianna Miluk: Yeah, absolutely. I think that's such a good point to bring up because there is like, there is a level of prioritization we have to put on when providing resources. You know, I, we've talked about this before, but like, even with referrals, you know, when we're like, oh, you should go see this person, this person, this, or, you know, in my head.
But sometimes the family cannot handle discussing all of those referrals at once. And you need to be able to say like, what's a priority? And I'm, you know, reflecting just on the, the case you just talked about and I'm thinking like, you know what, if this was a family that was like feeling, they were feeling, you know, right like, All right we've overcome this barrier like she's doing well, hopefully we're gonna get back to work soon. Things are gonna be just great. And it's like, again, totally well intended, right? I would've done the same thing. I would've been like, maybe we should talk about getting you, because in our head we're thinking, all right, it can take a couple weeks to get this established.
You've gotta get the referral and you're gonna have to go through that initial eval before you can even see the special. And like, we're going through all of that thinking, like, let's get ahead of it without, you know, the and, and then it's like, oh, wait a minute. And I think you bringing that up also shows how this is just like, I feel like.
Learning about this aligns really well with cultural competency and that it is an ongoing process. It is lifelong. It requires a lot of self-reflection, a lot of getting uncomfortable with like, what did I do? How could I have done that better? What were the cues they showed? You know, how am I gonna approach that in another situation, in another light?
And so, I think you know, I'm so glad that you were vulnerable and shared that like, that learning experience, you know, that you're like, yeah, and this happened like literally yesterday. And it's like those will continue to happen and they're supposed to happen. And so, I think that that's just such a good point too, to, to go back to like that self-reflection piece and how important that is to learning about this and, and bettering patient care.
So, okay. One more, one more topic to talk about, and this is one that I know gets both of us really hated. So, thinking about like just inequities to certain care. Thinking about ableism that's built in our systems, thinking about how we can support you know, clients in accessing quality healthcare when so many are quick to be cash pay only, not offer, you know, certain services to certain people strictly because of the inequities that are present.
Stefanie LeManna: Yeah. So, this is, this is a really great, you know, sort of question. And I particularly feel strongly about this because I am, you know, again, practicing in an area that is predominantly wealthy predominantly you know, white, middle to upper class families with a lot of access to resources and, and, you know, a lot of financial stability.
You know, I, and one of the things that's frustrating about the area that I practice in is that there is such a dearth of services and especially a dearth of services for providers who accept Medicare, or Medicaid.
Brianna Miluk: I feel like it's, I'm sorry to interrupt you. I just feel like it, it like feeds the very problem we're trying to facilitate not being such a barrier, right? Like we're, we're sitting here talking about how. People have decreased access to quality healthcare and by having a scarcity of providers who are willing to accept those programs.
And I like, I empathize with providers because reimbursement from insurance is so poor. And I know like, you know, it's very state by state, but I know I can speak for South Carolina in that the reimbursement rate for pediatric feeding is horrific for Medicaid in comparison to many other states. But there is also the same across the board, right?
And so, I absolutely empathize with that piece. However, there's also sort of, in my opinion, this is, this is me strictly speaking from my opinion there, there's an ethical dilemma that we kind of have to play with here in recognizing whereby doing things that are like, like cash pay only services.
By doing something like that you are. If, if the service you are providing is so absolutely medically necessary to these clients, then, you know, why are you only giving access to those that can afford it?
Stefanie LeManna: Sure. No, I, I think that's a great point. And, you know, there's a couple different sides to that, right?
So, the first, you know, sort of side to that is your provider who you know, leaves an established health system to provide services on their own. And I will tell you, when I started working at the otolaryngology practice, I work at. Somebody whose job it is, they get paid to credential me with insurance, like, did my entire credentialing process and I never had to worry about it.
But it's really challenging and it's really difficult. And they almost make it like, like counterintuitively hard. So, you don't sign up, right?
Brianna Miluk: They do, they do. They make it. So, and then it takes like nine months to do. So, like there is a level
Stefanie LeManna: Right, and you gotta do it every year.
Brianna Miluk: Yep. Yep. And so, there is a level of like, yeah, this, this is gonna take some effort for sure.
Stefanie LeManna: Yeah. So, I think to have this conversation, we need to recognize part of that, right? And, and that exists within the sphere of, of what we're discussing. You know, the second part about this is, you know, for anyone who has questions about, you know, reimbursement related things, I'm gonna give a little plug for our stellar reimbursement team at ASHA.
And you can email them at any time at [email protected], and they're outstanding. And we'll answer your question, you know, very, very confidently and very thoroughly. And you know, recently they, they talked to our healthcare team and the other day now I'm only speaking about from the understanding that I have.
So, you know, if you want to know more about this, I encourage you to reach out to our reimbursement team. But you know, what I can comment on a little bit is that you know, they, they talked us through some scenarios and how they respond to questions from members. And one of the things they talked about was how if you're charging for services and your service is aligned with the CPT code, you can't overcharge for it because of patients have a right to submit bills to their insurance company for payment. So, if you're charging like, you know, a thousand bucks for a swallow therapy session, somebody might come looking for you.
Now, I don't know all the context of what that occurs, what the regulations are. Is it just Medicare, is it Medicaid?
Brianna Miluk: Those are, that, there's that vagueness of like, what's excessive, what's not, you know?
Stefanie LeManna: Right.
Brianna Miluk: Mm-hmm.
Stefanie LeManna: But I'm, you know, purely just saying that there's this entire reimbursement piece that you need to understand, even if you don't accept insurance.
Okay. So, there's that piece of it where you need to be aware of like, are you following your state's regulations? Are you doing this? Are you doing that? You know, so access your colleagues and especially our ASHA team who, you know, has expertise in, in the reimbursement sphere.
We, you know, the other part of this is that we need to be really judicious in what we're recommending for our patients. And we can't just blindly make recommendations about, you need to see this person, you need to go here, you need to do this because we're not keeping in mind their social determinants of health and we're, you know, blindly making recommendations instead of considering a patient or their family's unique contextual factors. So when we, when we're considering, you know, their access to transportation, their access to ability to afford these things you know, their understanding of it and why their child needs it, we need to provide it in a way that they can understand it and we need to provide it in a way that makes sense to them.
And we need to give, help them achieve access in a way that's functional and respective of their needs and what they want for their family and their child. And we need to be really careful about the language that we use because families do trust us. You know, you brought up before that there's a lot of distrust in the medical community, and I do have to say that I'm really fortunate in my practice that I just make really great relationships with my families.
They trust me from the get-go. And I'm just really fortunate and and privileged to experience that. But I have to think really carefully about how I say things to families because when you're saying your child needs this, that your child will fail without this, your families are gonna take that as like the word and they're gonna follow that and they're gonna do what you tell them to do, regardless of if it's something that's accessible for them.
And is it really in that family's best interest and in that child's best interest?
Brianna Miluk: Yeah, I think that's a great point. And especially with, you know, unfortunately seeing some of these. Providers and things that just like refer around in this big circle of like cash pay. And a family, like you said, they, they truly do wanna do what's best for their child.
And if you are telling them this is the thing you need to do you know, this is what you're supposed to do, then they're going to do it. And so, I think you bringing up the fact of like just doing your, like doing justice to the situation, making sure we are not over pathologizing, over servicing a client for, you know, and focusing more on like functional outcomes and what is like effective and important to that family and that child. Because your optimum or like your recommendation, what you truly feel is best or right, might not be for that family. Because if going through with that service requires mom and dad or grandma or whoever the caregiver is to work extra hours and they don't get to spend as much time with their child or it requires them to, you know, x, y, z, fill in the blank.
Right? If it, if it is requiring them to take out, you know, get a new credit card. I've literally seen providers make recommendations and that actually like, kind of makes me sick. But they're just like, oh, we have this like medical credit card that you can use to pay for these services. And now that's another debt that they owe.
That's not considering social determinants of health, that's not being culturally responsive. And that, you know, is not providing well-informed care to your clients. And so, I think that, yeah, that's just a very good reflection to recognize, like even the things that we think are, you know, maybe it truly is like, we really do feel that you need this.
You need to make sure you're finding a way that supports the family where they're at, then before moving forward with those types of recommendations, because it may impact them in a way that you never even really thought, thought that it could.
Stefanie LeManna: I think it devalues our professional a little bit too, right?
When we're, you know, saying, you need this, you need that, you need to see these six different providers or however many different providers. And then none of it works and or the family is not understanding the information that they're getting at all of these appointments because, right. Like.
Brianna Miluk: Yeah.
Stefanie LeManna: The, all the other providers are overworked and tired and maybe not spending as much time with them. So, they don't understand there's, because they're not getting information in a way that's understandable for them.
Brianna Miluk: Yeah.
Stefanie LeManna: Because of that then, you know, there's maybe not as much follow through, not by any fault of their own, but because they're not receiving information in a way that they can understand it.
Brianna Miluk: Or they're receiving just way too much.
Stefanie LeManna: Much information.
Brianna Miluk: Like there's just way too many cooks in the kitchen where it's like, I can't do the recommendation from all of these providers at once. Like, that's just too much. So, then you get
Stefanie LeManna: Yeah.
Brianna Miluk: No carryover.
Stefanie LeManna: Mm-hmm. Yep. And then they're frustrated, they're tired, they're burned out, their child is still not eating well, and they're exasperated and they feel like a failure of a parent and.
And, and then they don't see value in, in us or any of the other providers on their care team because they're not getting the help in a way that's accessible for them.
Brianna Miluk: Or the even worse factor of that. I would rather a family feel like I, I wasn't doing good enough than the fact that sometimes what happens is then they feel that they're not doing enough.
They feel like they are responsible for their child not making progress. Well, if you went to more appointments, if you saw the person I told you to, if you carried over with the services, rather than saying, why are they having trouble carrying over the services I'm providing? Is this too much? Am I not providing it in an accessible manner?
Is this, you know, the what culturally linguistic barriers are present that I need to recognize? And so, I think that's the other side of it is like then sometimes these families are quite literally gaslighted into thinking it's their fault that their child didn't make progress for maybe because they said, Hey, I'm not gonna go see all of those other people because that's not gonna work for me.
And then they have the provider who says, well then we'll keep trying, but we're probably not gonna make progress. And I told you why. It's cuz you had to see. And it's like when really as the, as the feeding therapist, as a clinician, we should be reflecting on what we need to change. Cause that's why you probably don't need a hundred other cooks in the kitchen.
There may be a select few. I'm all for interdisciplinary care. That is not, it is, it should not be siloed. But we need to prioritize and recognize who we are adding to that group, to that team. And why. And what, you know, what it is that they're bringing to the team. So
Stefanie LeManna: 100%. I I think you, you know, said it beautifully and you know, really kind of wrapped it all together there.
And you know, I'd just like to add that Dr. Joan Arvedson says, "more is not always better."
Brianna Miluk: Yes, yes. And is that not the truth? It's the truth. It's the truth. There is a video actually on YouTube and I am gonna put this in the show notes and I apologize in advance cuz the video kind of is never ending.
But it's called Too Many Cooks. Have you ever seen it? It's from like a comedy. It's from like, oh. What is that late night comedy? Hold on, I'm gonna
Stefanie LeManna: Saturday Night Live?
Brianna Miluk: No, it's so funny. Hold on. It literally is just like this never, oh, from Adult Swim. So Too Many Cooks from Adult Swim is this music video that literally just like it never ends.
And it just says too many cooks, too many cooks, too. And I feel like that's how it feels sometimes when there is literally just too many providers, too many doing too many different things that don't overlap in the way they're supposed to do. So, I'm gonna put it in there and people should go watch it and you'll know how these families feel.
Stefanie LeManna: I love it. It's such a good point. It is such a good point.
Brianna Miluk: It is true. Sometimes it's more is not always better. More is not always better. So, all right. Well, thank you so much, Stef. I appreciate you immensely. I think this was just, ugh, such a valuable time. I, we could both talk about this for about 10 more hours easily.
We're, we're gonna stop there. We're gonna stop there. Is there any other closing thoughts that you have or, you know, where can people find you or learn a little bit more? Of course, in the show notes, I'm gonna put your article down so that they can read about it. But if people have more questions or just want to, to reach out, what, how, how can they find you?
Stefanie LeManna: Yeah, great question. Bri, I'll give you my email address so you can drop it in the show notes.
Brianna Miluk: Perfect.
Stefanie LeManna: And feel free to email me at any time if you, you know, just wanna comment or you want me to know something or you wanna pick my brain you know, I'm happy to share. And I, I think just, you know, to kind of end this up is, or, you know, wrap this up is just, you know, really think critically about, you know, all different parts of your patients, you know, take this holistic view of, of all the pieces of their care.
And again, like Dr. Joan Arvedson says, you know, always think about what else you know, you could be missing. And, and when you step back and look at the big picture, you know, there's so much more we can help families overcome, even if it feels like it's, it's a lot for them.
Brianna Miluk: Mm-hmm. Yeah. Absolutely. Awesome. Well, thank you so much. I, I'm looking forward to this episode coming out. This is a good time. Woo.
Stefanie LeManna: Thank you so much for having me. I loved this. Let's do it again.
Brianna Miluk: Yeah.
Thanks for tuning in to The Feeding Pod this week. If you enjoy 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.