EPISODE 261

[INTRODUCTION]

[0:00:00] MD: Okay. On the grateful journey today, I have Goose Danger Dawson here to tell us what he is grateful for. Baby, what are you grateful for?

[0:00:11] GD: My family.

[0:00:12] MD: Why?

[0:00:13] GD: Because I love them and they help take care of me.

[0:00:16] MD: Yes. In this season of Thanksgiving, and I'll be honest, Pack Dawson doesn't necessarily celebrate all of the components of Thanksgiving, but more or less, it's a day of gratitude. We hope that you have enjoyed our year-long gratitude journey and that you have loved ones that you also are grateful for. Happy gratitude journey and y'all are in for a treat because the trio of SLPs from Boston Medical Center are absolutely fantastic. Enjoy this episode. Goose Danger, thank you. Bye, y'all.

Hi, folks, and welcome to First Bite: Fed, Fun, and Functional, a speech therapy podcast sponsored by SpeechTherapyPD.com. I am your host on this nerd venture, Michelle Dawson, MS, CCC-SLP, CLC, the All-Things PFDs SLP. I am a colleague in the trenches of home health and early intervention right there with you. I run my own private practice at Heartwood Speech Therapy here in Cola Town, South Carolina, and I guest lecture nationwide on best practices for early intervention for the medically complex infant, toddler, and child. First Bite's mission is short and sweet, to bring light, hope, knowledge, and joy to the pediatric clinician, parent, or advocate.

[0:01:57] EF: By way of a nerdy conversation, so there's plenty of laughter too.

[0:02:01] MD: In this podcast, we cover everything from AAC to breastfeeding.

[0:02:06] EF: Ethics on how to run a private practice.

[0:02:09] MD: Pediatric dysphagia to clinical supervision.

[0:02:11] EF: And all other topics in the world of pediatric speech pathology. Our goal is to bring evidence-based practice straight to you by interviewing subject matter experts.

[0:02:21] MD: To break down the communication barriers so that we can access the knowledge of their fields.

[0:02:26] EF: Or as a close friend says, "To build the bridge." 

[0:02:30] MD: By bringing other professionals and experts in our field together, we hope to spark advocacy, joy, and passion for continuing to grow and advance care for our little ones.

[0:02:41] EF: Every fourth episode, I join them. I'm Erin Forward, MSP, CCC-SLP, the Yankee by way of Rochester, New York, transplant who actually inspired this journey. I bring a different perspective, that of a new-ish clinician with experience in early intervention, pediatric acute care, and non-profit pediatric outpatient settings.

[0:03:02] MD: Sit back, relax, and watch out for all hearth's growth, and enjoy this geeky gig brought to you by SpeechTherapyPD.com.

[DISCLAIMER]

[0:03:17] MD: Hey, this is Michelle Dawson. I need to update my disclosure statements. My non-financial disclosures, I actively volunteer with Feeding Matters, National Foundation of Swallowing Disorders (NFOSD), Dysphasia Outreach Project (DOP). I am a former treasurer with the Council of State Association Presidents (CSAP), a past president of the South Carolina Speech Language and Hearing Association (SCSHA), a current board of trustees' member with the Communication Disorders Foundation of Virginia, and I am a current member of ASHA, ASHA SIG 13, SCSHA, The Speech Language Hearing Association of Virginia (SHAV), a member of the National Black Speech Language Hearing Association (NBSLHA), and Dysphagia Research Society (DRS). Additionally, I volunteer with ASHA as the topic chair for the Pediatric Feeding Disorder Planning Committee for the ASHA 2023 convention in Boston. I hope you make it out there. 

My financial disclosures include receiving compensation for the First Bite Podcast from SpeechTherapyPD.com, as well as from additional webinars, and for webinars associated with Understanding Dysphasia, which is also a podcast with SpeechTherapyPD.com. I currently receive a salary from the University of South Carolina and my work as adjunct professor and Student Services Coordinator. I receive royalties from the sale of my book, Chasing the Swallow: Truth, Science, and Hope for Pediatric Feeding and Swallowing Disorders, as well as compensation for the CEUs associated with it from SpeechTherapyPD.com. Those are my current disclosure statements. Thanks, guys. 

[0:05:14] EF: The views and opinions expressed in today's podcasts do not reflect the organizations associated with the speakers and are their views and opinions solely.

[EPISODE]

[0:05:22] MD: All right, everybody. I am so in awe of today's guests. One, because today's guests are the people that I learned all about at findhelp.org that I've talked about like literally for the last year. It's these three lovely ladies that are coming on that taught me that, when I saw them last year at ASHA. But also, if you've listened to the weekly play-by-play, this has been a Ð what new catastrophe could go wrong for Pack Dawson? I have lost track of how many times we've rescheduled this episode, but here we are, we all survived, and the dog still lives. She's asleep on the floor, but we've made it.

I have to, one, apologize again to these lovely guests for allowing me to flake out because of life, and two, thank them with my whole heart for coming on and for being lights in our profession. Because truly, the work that you're doing is fundamentally life-changing for the patients that you see. But the wisdom that you impart to colleagues is profound. So, thank you.

Yes, I'm going to get teary-eyed. I love this. Okay. We have three dynamic guests joining us today from Boston Medical Center. Hint, hint, hint. Look for their names in ASHA while we're up there, you might want to catch them. But I have Juliet, Kerry, and Jen. They were a powerhouse trifecta when they presented last year. I'm going to go in alphabetical order, which is Ð H, I, J, K, L, M, N. O, let's start with O. There it is. I know alphabetical order. I teach people to swallow, not to spell. Juliet, can you take us from the top and introduce yourself? Thank you for coming on.

[0:07:08] JO: Thank you so much for having us, Michelle. We've been looking forward to coming today. I know it took a while for us to get here, but I'm glad we made this happen. We're excited to share the work we're doing at Boston Medical, and hopefully, our colleagues can take some lessons from that. That would be helpful with patients as well. 

My name is Juliet Ochura. I am a speech-language pathologist and a certified lactation consultant. I work at Boston Medical Center, and also work at Boston Children's Hospital, so both places. I specialize in the evaluation and treatment of pediatric feeding and swallowing disorders in medically complex infants and children. Everything from the NICU, multidisciplinary clinics, outpatient clinics, swallow studies. Kind of getting to do all of it, older kids with ARFID, and that kind of population as well.

I am most passionate about bridging the gap and access to care for low-income and diverse populations. We've been lucky to have the funding to be able to do some of that work at Boston Medical Center that we'll talk about today. Michelle, I don't know if this is where you want me to talk about how I got into being an SLP as well?

[0:08:36] MD: How did you find Ð I mean, I found out about the profession because my youngest brother was born with a cleft lip. Well, my stepmom got electrocuted when she was seven months pregnant. He also had dysarthria when he was born. He didn't talk until he was four. I learned about it because he went to speech therapy. By the way, one of my dance partner's momÕs, we did ballet together, Miss [inaudible 0:09:01] thank you for being you. That's how I found about it. I always like to hear people's stories. Yes.

[0:09:11] JO: Yes. My story is quite Ð at least I think it's quite interesting. Initially, I worked at for the CDC doing medical research in infectious disease. Then, my son had a brain injury when he was 15 months old. I found myself at Spaulding Rehab for about six months inpatient at Spaulding Rehab. There was this amazing SLP, who's still at Spaulding, Lynette Holmes, who worked with my son doing this feeding therapy, and also a little bit of communication.

Just watching her walk with him, that's how I fell in love with the field. I felt like it was such a nice bridge between the medical aspects of things. I majored in linguistics as an undergrad, so I felt like speech-language pathology and offering that option with the medical side of things was a good way to help families. I went back to grad school at MGH, and this is how I ended up doing feeding and swallowing. I wanted to be able to offer the same kind of help that I got from Lynette to other families. Kind of changed profession somewhere in the middle, just inspired by my own son's story.

[0:10:36] MD: If it's not too personal, how is your son doing?

[0:10:40] JO: He's the happiest kid I know. He has his residual medical complexities from his brain injury, but he gets to do tastes of purees, and we've had swallow studies. He aspirated, but he can do honey, [inaudible 0:10:57] and purees. We do that for pleasure as tolerated. But yes, he's good. He's the happiest kid I know.

[0:11:07] MD: That's [inaudible 0:11:08]. Well, thank you for sharing your walk. Now, we're going to pretend Michelle knows spelling. It'd be Kerry. Kerry.

[0:11:18] KP: Yes. Thank you again for having us. We're so excited to be here and to share what we're doing and to learn from you. I grew up in New Hampshire. I decided to be a communications major, and I didn't love it. I came home one day from winter break and told my mom I wanted to go into communication sciences and disorders. She said, "No way. I've been a special ed teacher for 20 years, and you never showed an interest. If this is something you really want to do, you need to come and shadow the speech pathologist in my elementary school." So I did and I loved it. Somewhere along the way, I was fortunate enough to find Jen and Juliet, and I love working with them. So we just have all kind of stayed together for many years now.

[0:12:04] MD: I love that. It's like the three amigos. For the record, in my head, I envisioned Ð I said three amigos, but I saw Ð what is it? Mickey, Pluto, and Duffy Duck from the Disney Three Mouseketeers. [Inaudible 0:12:24] Well, is your mom still a SPED teacher?

[0:12:29] KP: She just retired. She was 35 years a special ed teacher and she specialized in reading.

[0:12:35] MD: Oh, wow. That's profound. 

[0:12:38] KP: So we're coming to our ASHA talk because it's in Boston, and she was so excited. She said, "Can I come in?" Which is like low-key sneak mom, and I may not have done that with my dad once. "That's the only time I'll hear your talk, I'm definitely coming." I said, "All right, come on in." 

[0:12:57] MD: Love this. Jennifer, huzzah! Thank you for coming.

[0:13:06] JP: Perfect. Yes, thank you again for having us. I do feel like it's timely, because we met at ASHA. And now, just in a few weeks, we'll be able to see you again at ASHA in Boston. So yes, it is exciting to be able to highlight the work that's being done in the Boston area. I think there's a lot of exciting presentations to come.

My story started almost 20 years ago, I guess more than 20 years ago. Right after September 11th, I started working as a secretary at Boston Children's Hospital for the service that provides care to the most complex, medically complex patients. When I was a secretary there, one day, somebody dumped the feeding team scheduling folder on my lap and said, "Here you go. Today's my last day. You're scheduling for the feeding team." I was thinking about going back to grad school anyway, but I met Kara Fletcher Larson at the time, and she was a speech pathologist working in the feeding team.

She kind of took me under her wing as I applied to grad school. That was how I discovered that feeding and swallowing was a part of the training and communication disorders, speech-language pathology. I just fell in love with it, how it really encompasses so many different areas and you have to pull together all of the pieces to make sense of your complex patients. I kind of was trained at Boston Children's Hospital as a graduate student, then I was hired as a clinical fellow. Then, Kara and I, together kind of forged forward with a small group and just continued to grow the team there.

Now, I'm working at both Boston Children's and Boston Medical Center and am excited to share just how two hospitals, same city, how do we have to adjust what we've learned and apply it to make sure we're providing access to all patients.

[0:15:02] MD: Yes. Yes. I love this. I didn't realize how many children's hospitals are actually up there. One of my dear friends, Emily Ð y'all might know her, Emily Justice. She's an SLP in Boston. Emily's a hoot, and she goes, "Oh, Michelle, there are so many hospitals here." Well, I mean, South Carolina was real small. Virginia is a little bit bigger. I try very hard to hide my twang, but now that I'm back in the mountains, I find it slipping out more, and I'm like, "Ooh."

[0:15:37] JP: Maybe you'll get to hear my Boston accent today.

[0:15:39] KP: [Inaudible 0:15:39] today.

[0:15:43] MD: I may or may not have Ð you'll have some of my favorite art museums up in Boston. so I may or may not have decided to fly in accidentally early on Tuesday, so that I could have a few hours to like put in earbugs Ð we call them earbugs, because my youngest said they looked like bugs, so earbugs. I'm going to toss in my earbugs, and I'm so excited. Okay. All right. I'm going to take it from the top because we have a lot of ground to cover. If we go over, that's okay. Can someone Ð I'll let y'all decide who. Can you share with us what's unique about the populations that you've been called to serve at Boston Medical Center, and some of the challenges they face with respect to PFD interventions?

[0:16:25] KP: I'll take that with just a quick overview of the population that we serve at Boston Medical Center. Our mission at BMC is to provide exceptional care without exception to whoever walks in the door and whoever comes to see us. It's a 514-bed hospital with the largest Trauma Center in New England. We are the largest safety net hospital in New England, which means that we serve mostly a low-income population, regardless of their insurance coverage, or their ability to pay, or their immigration status. 

BMC was the first hospital enrolled in the Baby-Friendly Hospital Initiative. So we very much support Ð yes, mother-baby connection.

[0:17:13] MD: Yes, but a lot of people may not know what a baby-friendly hospital is. Can you explain?

[0:17:19] KP: I can, yes. You might be able to explain this better than me, Michelle. But the whole initiative is to support mother-baby bonding from birth and to support breastfeeding as much as possible. 

[0:17:30] MD: Yes. Folks, if you're listening, it's like a training and a certification the hospital has to apply for. But what's really cool is Ð and I learned about this when I was getting my CLC. It's when the baby's born, they literally put the baby on the mom's tummy and the baby goes through the reflexes to crawl up to the mother's breast and latch.

I remember watching the videos, thinking, "There's no freaking way that's going to work." Then there's the baby like a spider crawling on the mom. Which also was kind of creepy, I'm not going to deny that's weird. Juliet's like, "Yes, yes, it was." Because [inaudible 0:18:06]. I don't like that sensation. There's a reason you donÕt want to play it in your house either. But yes, but Baby-Friendly Hospital Initiative is profound. Yes. Okay, continue. Sorry, I got very excited. I want to make sure folks Ð

[0:18:22] KP: It's been amazing for us and for our team, because we've been able to learn Ð we're all CLCs, and we've been able to learn from the IBCLCs, and we work closely together, both in the NICU and outpatient, so that's been amazing. BMC also had the first hospital-based baby cafe in Boston, which is so exciting. It's a lactation support group run by a lactation consultant, and anyone can come. I went with my own kids, and it's just an amazing supportive group where you can connect with other moms, and have the guidance of an IBCLC or a CLC. That's amazing.

Nearly 75% of our patients come from underserved populations, and rely on government payers for health insurance. That includes Medicaid. It's been a challenge, and I think part of where this presentation came from is that we had to be really creative to find resources that were accessible to our families. We want to make sure that we're providing recommendations that they can access. So it's kind of spurred a lot of creativity in working together to try to problem solve for our families.

[0:19:29] MD: If yaÕll have that many families that are like different immigration status, and I'm assuming that you work with folks that have lots of different languages, and so there's some pretty Ð I associate that with, do they have the same access to care and health literacy? Are there lots of translators available?

[0:19:52] KP: Yes. That's an excellent point. I would say more than 30% of BMC's patients don't speak English as a primary language. As much as possible, we try to incorporate in-person interpreters, but we do work closely with an interpreter. I don't want to spoil the rest of our talk today, but Juliet's going to go into how we've made everything more accessible for our patients from language. I don't want to step on your toes, Juliet.

[0:20:17] JO: That's fine. I think we can talk about it at any point, that's fine.

[0:20:22] MD: I got excited.

[0:20:28] KP: The other thing that I think is different about BMC, and kind of special to work with is that, 75% of our staff are female, and 52% or more now identify as non-White. It's a really diverse workforce and a diverse patient population. I think that really helps the families connect with us better.

[0:20:53] MD: Yes. It's reflective of who you are as a nation.

[0:20:58] KP: Yes. Did I miss anything, Jen, and Juliet from demographics?

[0:21:01] JO: No, apart from just the limited English proficiency number, like more than 30%. More than half of the patients that come there identify as either Black or Hispanic. So it's majority non-White patients. Then, within our own speech and language patients, more than 40% are non-English speaking. When almost half of our patients don't speak English as a first language, it forces you to be creative about how you're providing care and how you're improving access. I think also, there's a lot of trauma, there's a lot of immigrant population with a lot of trauma through their journey getting to the United States. You literally check every box and the social determinants of health, in terms of what were the barriers to accessing care.

[0:22:00] MD: Yes. Okay. We have a Ð y'all, bless them. They gave me great questions, but I just naturally get excited. Now, like, we're going to get to the questions, but we might have some deviations along the way. But when you're serving this population, how has your practice changed? How has it evolved? Because I can speak English, and bad English, and apparently twangy English. that is still limit of my Ð I can also say, "Where's the bathroom?" Because when I was pregnant, and I was going to home health patient's houses, I can say that in Spanish, because it's very difficult when you have something playing hockey or soccer with your bladder. But yes, but how has. the practice evolved?

[0:22:49] JP: Yes. I mean, working in a healthcare setting, or really any setting as a speech pathologist, time is so valuable. There is productivity expectations, and all of that. But it does take more time to provide service to these patients, because of all of their other needs outside of just dysphasia. We all sat down together a few years ago and reflected on what our experience had been and whether we felt like we were providing the care that our patients truly needed. I think that's what spurred us to really focus on increasing and improving access for these patients.

We shared stories together of providing recommendations in radiology for thickening, and we were giving them our recipes that we had developed, and we're excited we had food-based recipes, and we're just handing these families English translations of pudding, applesauce. And watching the family's face go blank. I think it was, Juliet, your patient, you said, you turned to the mom and said, "Do you know what pudding is?" The family actually had no idea what pudding was. That's something so simple as just making sure Ð you assume everybody knows what applesauce and pudding are because we talk about that every day as speech pathologists. But truly, something that simple, they really weren't taking.

"Then, trying to take that further to think, "Well, how do we make sure that they can access pudding, and applesauce, and yogurt, and all of these foods?" So learning about different cultures, and what are the foods that they're actually providing to their children in the home. Who's preparing the foods? Because a lot of our families have multi-generational homes with grandparents living in the homes, and they bring all of their cultural beliefs and practices to the table when they're feeding.

We've really made an effort to try to learn about different cultural foods for the populations that we service. What are pupusas? What is African fufu? What are the textures that are in those foods? How do you need to learn about your chewing development skills to make sure that they're able to provide those? It's eye opening with telehealth over the last few years to see inside a patient's home. It's such a privilege. But a lot of times, you're seeing families that don't own a kitchen table, and they're feeding their children on their beds, or even all just sitting on the floors. In some cultures, it is typical to feed on the floor. But for some of our patients, it's just that they don't have the resources to have what we think of as a typical meal environment.

It's really been eye-opening, and making sure that we're not just providing a list of recommendations that we have used all along. We need to really think through each recommendation thoughtfully to make sure that we're thinking ahead, making sure we follow through to ensure that they have the resources to then purchase what we are recommending or to obtain what they're recommending.

[0:26:00] MD: So, a couple of quick thoughts. I've had the pleasure of teaching the PFD class at the University of South Carolina and now Ð that came up to me. Now, I'm going to teach it at James Madison. But to be honest, they're both PWIs, predominantly white institutes. They are historically upper to middle-class individuals that are coming. The question that I always start and I open my PFD classes with is what is your favorite spice? What is the seasoning that you go to? But my favorite, I love oregano. I love umami. [Inaudible 0:26:42] Quick culture check. Kerry, what is your favorite spice?

[0:26:47] KP: Turmeric.

[0:26:48] MD: Oh, I don't cook with it. That's delightful. Jennifer?

[0:26:52] JP: Well, my Italian mother won't be happy to hear this but I've married a Ð my husband's from El Salvador, so I really enjoy cilantro. I know it's a little controversial as a flavor of spice.

[0:27:06] MD: I love that. Juliet, what's your favorite, love?

[0:27:10] JO: I'm of African descent. My favorite is masala, which is African Indian kind of mix. But if you've had masala tea, you probably have had a taste of it. But like the real masala really wakes up your mouth.

[0:27:26] MD: Yes. Folks, if you're making recommendations, and I say this because we develop our taste buds. Sweet, salty, sour, bitter, umami. But that evolution in taste is actually an evolution in your brain's maturation. It's not so much your taste buds on your tongue, right, which is very interesting. If you have a patient that has a neurological infarct, they might have damage to the gustatory cortex portion of their brain, and be missing some of those taste buds. 

We might, as upper middle-class white families give the perspective of French toast sticks, cinnamon rolls. Those are average breakfasts. But we have to expand and take into account the culture that we're working with, and seeking to understand those flavors. Because I will never forget, I had a little girl, she was Italian. Spaghetti and meatballs, favorite breakfast food. So, whatever. I mean, spaghetti? You do you, honey. If it means you're putting calories in safely, I'm doomed. But I say that, so that if you're listening to this, those are part of our own implicit biases that we have to look at. Yes, just wanted to throw that in there.

[0:28:48] JP: Kind of a funny aside to that, Michelle. A couple weeks ago, I had a patient who, they were of African descent. The mom came to us because the child eats all of her cultural foods at home. She explained all the vegetables, and the flavors, and there's a little bit of spice, and it's a soft kind of stew that she gives. He eats everything she gives him at home, but she's concerned because he goes to daycare and won't eat chicken nuggets, and mac and cheese. She really needs him to eat all of these American foods.

I think my mouth almost dropped when I said, "Oh, please don't lose what you've taught him.Ó It's necessary, because she has to go to work and has to bring him to daycare. But he really didn't have the chewing ability to eat the more complex or chewable textures, but he can eat the soft really stew or soup-like textures at home. I thought that was so funny that we always think, work towards the more complex. This mom was like, "Oh, let's get him on the bland American diet."

[0:29:55] MD: Also, I think I'd pick a stew over chicken nuggets any day of the week. [Inaudible 0:29:58] Okay, I know I caught you mid-thought process with that big, but I just thought was such a Ð it connected so many neurons there. Back to you, Miss Jennifer, what else on your heart?

[0:30:16] JP: Kerry, do you want to talk about telehealth?

[0:30:19] KP: Yes. One thing that came from the COVID pandemic was telehealth, which was something that we have been able to use to help us connect more with our families. We're able to see them in their home, we can see what foods they have, what their seating and mealtime experience truly looks like. It has helped us make our assessments and our recommendations more authentic. That's been huge for just getting Ð there's nothing more intimate than being in someone's house. They're welcoming us to their table, so to speak, or their mealtime, and we're just learning so much more about them.

I think that has really informed our practice, and it's helped with generalization too. It's one thing when a kid comes and does feeding therapy in the office, and you can get them to eat a food. But then they go home, and that's always something that we hear, ÒTheyÕll do it with a therapist in the office, but we can't get them to do it at home.Ó I see that as kind of the next step for generalization. Now, you have us, but in your house. 

We've worked really hard to start collaborating with the community providers early intervention, or the ABA therapists. And we try to find a time when everybody can be at the family's meal time together, so we can try to promote generalization. That's changed our practice and I think improved our practice.

[0:31:41] JP: We have documented too the change in show rate for our visits when you offer telehealth as an option. We used to have a lot of no-shows when parents had to bring their children into the hospital and ride buses with a stroller. Once we started looking back, and insurance start Ð companies started decreasing the rate at which they reimburse for telehealth, we were able to prove that our access to care was so much better when we continued to offer telehealth as an option.

[0:32:13] KP: Yes. That's been really important too, that telehealth, to get to our hospital, you have to get your kid for Ð you have to leave work, get your kid from daycare, wait at the bus stop, or wait for the train. All of that is time. Now, with telehealth, the families meet us much more quickly, so to speak. They don't have to take as much time off from work. They don't have to travel all in to the hospital. Then often, when they get to the hospital, the poor kid is so dysregulated because they've been rushed onto the bus and off the bus. I just think it's really helped with accuracy. Jen's right. Absolutely, with access to care, we're able Ð just yesterday in clinic, we had someone had a car issue, so we just switched to telehealth. It's just so much easier for the family. 

[0:32:59] MD: Yes. One of the big worries that I have fielded is, especially in early intervention, the birth to three population. If the child falls asleep before the session, which happens. For me the benefit of telehealth is when you're truly engaging in early intervention as laid out by the IDEA mandate, you're doing caregiver coaching. If you're taking your skills, seeking to understand the caregiversÕ worries, and empowering them, you're building them up in that time. For some of our most medically complex patients, if they're on multiple seizure medications, they might have windows during the day that they're awake.

I feel like somewhere along the line, wearing faculty hats, we don't empower the students that it's okay if the tiny human is asleep when you're doing early intervention, because you're there to coach the caregiver and empower them. The natural question is, "But I have to do something with the patient, I have to do something with the patient." I'm like, you get one hour a week. It is what you are equipping the patient for the other 200-plus hours in the week, or however many it is. I just forgot math. But it's that time that's important. 

Let's be honest, when you're doing caregiver coaching for PFD, you're in it for the long haul. These babies that we see, they could be on your caseload for months or years. That's Ð everybody wants a quick Ð do you all agree to that as well?

[0:34:37] JO: Yes, I truly like that perspective, because we've definitely encountered that, especially with telehealth, "Oh, the baby's asleep." We were waiting, but they fell asleep. But then, we're in the home so we can be like, "Can we go to your pantry, and take a look at what's in the pantry, and what can we come up with a plan, or what foods to work on? Let me see what cups you have in the home. Let's look at the highchair or whatever you're doing for seeing, for positioning, how can we work on this?" Kind of not always focusing on the patient having to be actively involved in the visit. But what are other things we can do from a training or coaching perspective? With the benefit of being in the home and being able to see these other foods, this is what's in my fridge, this is what's in my pantry, and sort of working through that with a parent, even if the kid's not able to participate.

[0:35:33] MD: Yes, yes. And that, making recipes. This is what we have in the pantry right now, this week. What can I do with this? Also, I have seen some of the cleanest homes and some of the not-cleanest homes. Home health life, it's not for the faint of heart, let's be honest. I definitely had to pull cockroaches out of my bags when I'm in doing my assessment, and you're like, "I'm going to slide this right on out. Leave this here." But yes, I wiggle in my seat.

But those are real questions that then gets me back to access to care. Because it's through those moments when they're intimately showing me what's available, that I can recognize and say, "Hey, it looks like you're running a little low this week. Did you know about this community resource or have you applied for this? Has your case manager told you about this?" This is part of equity. For lack of a better phrase, we're leveling the playing field, and that's what it should be. How about with y'all, how is equity and access of care played in?

[0:36:49] JP: Yes. I think when we were in the past, if we had a family, for example, who needed a Dr. Brown preemie nipple, we would send them on their way with one or two nipples and assume that they would be able to take that recommendation follow through. But we found at Boston Medical Center that despite our best intentions in giving them what we thought were the tools to succeed at home, we would see them back on telehealth a week later, two weeks later, or back in person. They're not using the tools that we had already given them because somebody lost it, they left it at daycare. You're giving them these recommendations to try to have them be able to succeed with feeding, but it's really Ð it was eye-opening, actually to see what they were coming back with. It's just setting their babies up to have safety issues with feedings.

We ended up trying to learn about what the different bottles were that our patients had access to. We actually Ð I went to Dollar Tree, I went to Dollar General, I went to Family Dollar, Walmart, and bought all of the bottles. Because we know from Britt Pados' testing of nipple flow rate, for example, what the best slow flow, medium flow, and faster flow bottles are. What we ended up doing is asking Britt to help us with this initiative. She tested these bottles for us, the nipples, and we were able to compare the information we learned from what the bottles are from these other more accessible stores to what we knew was the best practice and research. I thought that was a really helpful thing that we've done or initiative that we've taken to be able to provide our families with recommendations that probably are more realistic for where they're going to purchase their bottles. That's one thing that we've done. 

Britt, I believe is going to publish that information from those nipples on her website, infantfeedingcare.com. Yes, it's just another initiative that we've taken, is to all become certified lactation counselors. I think Kerry mentioned that at the beginning of the podcast, I think back in 2019. Just learning about the Baby-friendly Initiative at Boston Medical Center that really spurred us to want to be able to provide the best care for the patients who want to breastfeed in our hospital. We have a really high population of moms who are in recovery or babies born with neonatal abstinence syndrome, or neonatal opioid withdrawal syndrome.

We wanted to be able to support those babies as well and make sure that we're serving families that are now living in shelters and realizing that they don't have easy access to be able to obtain the thickeners that we want to suggest for aspiration. I actually had to Ð I called the WIC program in our state. I don't know if that's just a Massachusetts thing, Women, Infants, and Children.

[0:39:54] MD: Nationwide.

[0:39:55] JO: Yes, it's nationwide.

[0:39:57] JP: And learn what is the process for recommending a patient to receive certain types of cereal, or what is actually available to our families who receive services through WIC. That was really helpful to learn about that process as well.

[0:40:13] MD: Can I pop in real quick? WIC is Women, Infants, and Children. It's a nationwide program. What I was told in South Carolina is, that if a patient needs thickener, or if they need the cereal to slow the flow rate, or whatever it may be, as long as they have a prescription from the physician in South Carolina, they would approve it and add it in earlier. If they needed a specialty formula that might have been out of their price point, like say, they need Elemental, which smells freaking awful. I don't know about you, but I [inaudible 0:40:48]. But when a baby pukes on me after that one, I'm always like, "Oof, that's right there. Poor baby." But if they need that specialty formula, as long as they get the prescription from the physician, WIC normally covers it, unless there are extenuating circumstances or clerical error. Because humans goof, but that is at least what I have found. I don't know if that holds true for y'all up there.

[0:41:18] JO: Yes, that's true for us too. Like if they need a specific product for the cereals, applesauce, or whatever. If they need more of it than what WIC provides, and the same for the specialty formulas. So if they need more supply for thickening, as long as they have that latter, they can get more. But I think this is also kind of a nice segue into some of the things, the ways we've had to be creative in terms of Ð our department and the hospital have done their best in terms of what they can provide for resources, but we had to sort of think outside the box, what more can we do.

We thought about, how about trying to apply for grants to see if we could get some funding to support some of our initiatives. We applied for health equity grants through BMC and patient safety grants. We were really lucky to get some substantial funding that that's been able to help us bridge those gaps. One of the biggest gaps was in healthcare literacy or access to educational materials in their native languages. Through this process, we discovered how expensive it is to translate documents in several languages at a professional level.

We did a survey, we pulled data from Epic on what are the five most common languages spoken by majority of our patients. Those were English, Spanish, Haitian Creole, Portuguese, and Vietnamese. We were able to translate all of our thickening recipes for all the consistencies into all those languages. We're able to have professionally produced videos on how to thicken with Jello mix, step-by-step process video in five languages. How do you thicken with cereal? Video done in all five Ð sorry?

[0:43:28] MD: Is this on your website? Because that's cool.

[0:43:32] JO: I'll get to that part, about accessing it. Then, IDDSI testing, which we're all doing right now with Ð because we know all the latest research about how the thickening recipe will be different based on, are you on a fully elemental formula or semi-elemental formula? We created a video on how to do IDDSI testing, and we were able to get that professionally done and translated into five Ð accessible in five languages. Basic education on material, and what's aspiration. Because a lot of families, they'll come for the swallow study, or the clinical feeding evaluation. It's information overload, and like, what is happening, what's going on.

The feedback we received was it would be helpful to have something with visuals of the anatomy, and that simple things of what symptoms would be concerning, what's actually aspiration, and what can we do to address it. We're able to have that done in all five languages. We have an MBS social story, because again, just understanding the process of where do I go to the hospital, what's a swallow study, what do I expect? What should I bring? So that they're better able to understand the process, but also to prep the kids, especially for the older kids that might have some sort of behavioral, sensory-based challenges.

Then, we have all these kinds of inbuilt into Epic so that we can easily send it to the patient portal to families, to autism. Kerry actually has a cool story about a Haitian Creole dad. Kerry, do you want to tell you a story about the translator and materials?

[0:45:20] KP: We were part of Juliet's project. I don't know if you Ð I don't think you mentioned this, Juliet, is that we have a graphic, explaining aspiration, what it looks like in all the different languages. I had shown them the graphic, which I had provided to them and the interpreter. It was in Haitian Creole, the interpreter took it, and just started talking, and explaining the aspiration. So, I started translating, and he was saying, "I already said that. I said that, because it's on the picture. I already said that." Then, I said, "Okay. Well, I'm going to be right back. I just need to get some supplies."

We have these thickening kits that when we recommend thickening, we can give to the family. So I gave them all the nipples that they needed, the thickener. I came back and the recipes were in Haitian Creole, and I handed it to the family. The dad started to cry and said, "We had recommended thickening before prior to our intervention period, but we didn't have the recipes in Haitian Creole and seeing them." He said "This is the first time that I understood what you're telling me, and that it's going into his lungs. Now, I understand why you guys have been telling me I need to use this nipple."

Then, the interpreter was just in awe. He was like, "I've never been able to explain this to a family like this. These graphics were so helpful." He said, "Everything is written here in Haitian Creole, I can just explain it more naturally to the family." But I was struck by how impactful having the materials in their native language was for the family and for the interpreter.

[0:46:46] JP: Yes. Having the images too, I think we take literacy for granted. We realized when we reflected on our practice over the years that a lot of our population had low literacy levels. So we really wanted to commit to not just having everything written in these languages, but also visuals, and images, and videos that show step-by-step of how to work through the process for the interventions.

[0:47:12] JO: Right. Now, we have QR codes. If you have a Portuguese-speaking family that will come for the swallow study, and the infant aspirating, they have the visual explaining everything. They have the recipes for thickening in their language. they have a QR code, they can go home, to scan it, and they can watch it 100 times if they need to, and how to do the IDDSI testing to make sure it's the correct consistency, how to thicken. 

On top of that, we also wanted to not just assume what we felt like families needed, but also directly hear from them. From a qualitative research perspective, we had baseline focus groups in English, Spanish, and Haitian Creole, to just talk to these families and find out, what are your biggest barriers to access and care in terms of feeding and swallowing interventions? Or just speech and language interventions in general. What are the resources that are available to you? What stores do you go to buy things? What are some of the barriers to getting the things you need? What can we do to better support you, to make it easy to implement recommendations? 

We sort of had to change some of our practice based on the feedback that we received. Interestingly, one of the things that families really wanted was support groups. The focus groups ended up almost starting to be support groups, even though that was not initially what that was intended for it to be. But the stress around feeding, and feeding disorders is huge, and families were just like, "We need to be able to talk to other parents about how they feel about this, how are they processing this, what are some things that are working for them."

So in terms of next steps, that's one of the things we're thinking about? How can we do this to be able to provide that social support? Because we have the added challenge of transportation challenges, childcare challenges, but also language differences. Thinking about going forward how can we incorporate that, because that was one of really heavily requested kind of support that parents are looking for.

[0:49:43] KP: Yes. That came up in clinic when a patient was telling us, I didn't realize that the patient has PFD. The parent was saying. "I've never met another family with a kid that has eating difficulty like this. I went to this support group." They called the focus group a support group. "To see other people in the room talking about the same thing was really impactful for me. I want to know when you're going to be doing that again." I was thinking, she's talking about the focus group, where that wasn't really the point. But she said, "It was so important for me" and she said, "Now, I talk to those people outside of the group, and yes, it's just been a really big change for me to personally know someone that is Ð I don't feel as alone."

[0:50:28] MD: Yes. Folks, if you're listening to this, and you're like, '"My family say the same thing." There's right out the gate, I got two thoughts. One, Feeding Matters has a program called the Power of Two. For free, they will take one caregiver that they have gone through training with, it's been there, done that, auntie, mama, grandmama, whoever is the caregiver role that's walked this walk. They will train them to then mentor a new caregiver, somebody who's just starting this journey. That's all free. That's a free resource that Feeding Matters does.

Another one is the National Foundation of Swallowing Disorders, NFOSD. One Thursday every month, they do Ð and forgive me. I don't remember if it's the second or third Thursday that they do the pediatric support group. But they host a pediatric feeding disorder support group for caregivers, and it's virtual. Anybody anywhere can log on. Normally, Donna Edwards, who is as ASHA at BCS-S mentor. She was my mentor for the BCS-S. She normally is the one that hosts it. That's a free support group, so you can reach out. Also, NFOSD will provide you the tools to help set up a virtual support group for your facility, for your site, for your rehab company, for your early intervention outfit, whatever layer you're in. But there are tools out there, if you hear this from your caregivers, and they're free and amazing. Also, do you guys ever take advantage of the Dysphasia Outreach Project to help fund? DOP if you're listening, thank you for existing.

[0:52:26] JO: Michelle, do you know if the NFOSD has any non-English speaking groups?

[0:52:32] MD: That, I don't know. But I do know that Inez Esperanza who just got her C's, she was volunteering her time with Feeding Matters in translating the documents into Spanish. Inez is presenting at ASHA on DEIA barriers for clinicians into the field with PFD. She's presenting with Ð oh my God, don't kill me. I just forgot her name and I can see her face. Dr. Lindsay from Georgia. I just can't remember Lindsay's last name. But she's brilliant. I will research this because now I'm embarrassed, but it's one of our invited talks for PFD this year.

Also, I was just thinking, as you were talking, we need to talk about interpreters and see if we can get Feeding Matters some of their additional tools into the hands of other interpreters. But yes, you guys are doing phenomenal work. Are you exhausted? Because I'm exhausted for y'all.

[0:53:32] KP: It certainly takes a team. That's for sure.

[0:53:36] JO: It's definitely very meaningful and rewarding work. Even though Ð I know you had asked about kind of the stuff being on our website. We just started rolling that out too, because we're doing pre- and post-intervention research to see if this actually makes meaningful, this measurable kind of change from this. I think once we're done with that process, and then kind of getting clearance through BMC marketing, about making this accessible, I think it's going to be great because it's all over the country. A lot of urban populations, a lot of non-English Ð we also have these things in English. Whenever that becomes accessible, you can just watch how to do IDDSI testing, watch how Jello makes cereal, whatever.

But to make this available in all these languages, and have the visuals, and all that, even just seeing the faces of the families when you're like, "Okay, here's the handout." Then like, "Oh, it's in Portuguese. Wow, that's awesome." Even to just have that option for the bilingual ones who like, "Would you like this in English or Spanish?" They're like, "I speak English, but I read better in Spanish. Can I have the written ones in Spanish?" Yes, it's just, I think been really life-changing for a lot of our patients to just improve that access. But also, what we're able to do with supplies because we're no longer just giving one to two nipples for, "Okay, we need to change the feeding plan, because they are spending grossly. But he has four bottles, and he has five nipples, and he has five boxes of cereal to get you started. If you need more, call us, or come to the front desk, and you can have more." They're like, "Oh, so I don't have to run to the store and try to scramble at the end of the day to try and get this started." The other option is just going home and feeding him the same thing knowing he's aspirating.

So, just to have that peace of mind to have like a good chunk of supplies to get started has been really helpful. I would encourage other people to just be creative, think outside the box, there are grants out there. Don't be afraid to ask or see if there are other ways that you can be creative about improving access for some of this more diverse and lower SES families Ð

[0:56:14] JP: Even before we started this research project, being able to provide all these dysphasia items to the families. Kerry, you had a taste of this during the pandemic when you were still running the sensory feeding groups, and you had the caregiver. You had the Ð was it the social workers actually delivering food boxes to the patients?

[0:56:36] KP: Yes, physicians, all of us. So we had a virtual group feeding therapy program that we do every twice a month for our patients with PFD. One of the challenges is that, families that are food insecure don't really feel comfortable playing with food, because they need to eat the food. What we've done is paired with the Ð Boston Medical Center had the first hospital-based food pantry in the US, the Preventative Food Pantry. We would take bags of food from the food pantry, which gives each family enough food for two weeks for their household, and we would drop it off at their house with a note on how to log into our feeding therapy program.

The families would all have the same food, and they could all participate together. And yes, during the pandemic, we dropped off a lot of food to a lot of different families in the Boston area. The food pantry is still around. Patients can go after their visits. They get "prescriptions" for foods that are medically necessary for them. It's totally customized to what their dietary needs are.

[0:57:44] JO: We can write those prescriptions as SLPs. So if they come for feeding therapy, or a visit, and they screen for needing that, the SLP can just write the Ð they call it a prescription, but it's just literally just saying, they need to go to the food pantry to get some supplies, and then they can just go and get it.

[0:58:03] KP: We actually work very closely with the food pantry manager. We can say, "Hey, we have a family Ð we'll call him, he has food bags ready to go. We have a feeding therapy family coming, can you make sure it's ready for them." He's happy to do that, and it's conveniently located next to the WIC office. A lot of families, if they're going down to get their WIC supplies anyway, they just go over to the food pantry, get their groceries, and then they're all set.

[0:58:27] MD: The funding, because my next thought is, how is that funded? Is that a grant? Is that insurance is that just magical money to the hospital allocates out of the goodwill?

[0:58:39] KP: Well, a lot in the food pantry at BMC is funded by a lot of donations, but the hospital also does fund it. The most recent number we have is in 2021, they gave away 50,000 pounds of food to 83,000 patients and their families. It's a lot, it's a big production. The other thing that BMC has that we also have taken advantage of is a rooftop garden, a rooftop farm. We do a feeding therapy class every month in the summer on the rooftop farm with the farmer. It's just amazing. Then, the farmers harvest, the fruits, and vegetables, and herbs, and what's there. Then, the food is available every Tuesday for patients, families, and employees in a BMC farmers' market, which is amazing. 

There are pretty big bags of food that Ð you wouldn't believe the produce that they get from this rooftop garden. It's amazing, the volume and the quality. They're just beautiful. For a dollar, you can get these huge bags of produce.

[0:59:41] MD: That's an answer to prayers for so many, I'm sure. To be able to pay it forward like that. Okay, it gets you thinking about this, the green space on the roof. I mean, you're feeding their bodies, you're nourishing them that way. But also the amount of good that that green space on a roof does for study, for overall temperature, for Ð they were trying to make a pitch in Columbia before we left, because the downtown Columbia, South Carolina, they had Ð I don't remember which organization came in. It's three degrees higher temperature in downtown Columbia than it is just half a mile out, because of all of the asphalt surfaces and the roof lines. They were talking about putting green spaces on some of the roofs. But all I can think of is, but what can we do that's good. I mean, yes, putting green space on roof is good. But this is a prime example of paying it forward on a whole another level. Help somebody somewhere who is listening and can make a connection.

Okay. So to be respectful of everybody's time, because I know I'm going to have a meeting in 20 minutes. Man, I can only assume how many patients y'all have to go see today. But can you give me your parting thoughts, and as you're giving me your parting thoughts, can you tell us if anybody has any love money lying around or as grandma would say, a little bit of mad money, where could they donate it to? Juliet, I'll go backwards. On my screen, y'all are this way. I'll start with Juliet, then go Jennifer, then go to Kerry. How about that?

[0:59:41] JO: Well, first, I want to just say thank you for having us today, and giving us the opportunity to share some of this work that's so dear to our hearts. I hope that even if it's one thing you take from today that inspires you to be that person that takes that stake. It's time to inspire change. Don't wait for somebody to do it. You can do it, and you can start from the smallest steps. The work we do is so meaningful, feeding is such a Ð it's the heart of every family, every occasion, every day. We eat every day. It's a privilege to support these families, and this journey, and whatever we can do to help make things better.

In terms of where to donate, I think we have The Grow Clinic at Boston Medical Center, sees a lot of immigrant population, most socioeconomic status. It's a clinic for kids that have failure to thrive, or growth faltering, feeding difficulties, there's a lot of food insecurity. So if you just go to Boston Medical Center website, and look for The Grow Clinic, there's a button there to donate. I'm sure they would appreciate it. That goes directly to their families and the children that are seen through that clinic, and supports everything from food to formula to diapers, wipes, and other supplies. That's helpful.

[1:02:56] MD: Thank you. Jennifer, final pearls of wisdom for Ð I should have saved the pearls of wisdom joke for Kerry. Just kidding. But pearls of wisdom for that topic, and then donate spot?

[1:03:11] JP: Yes. I'm so grateful to you for giving us this opportunity to bring what we've done at Boston Medical Center to a wider audience because I don't think I've ever felt so rewarded by my work just in terms of providing care, and actually getting the items that families need into their hands. You asked a few minutes ago if we're tired, but no, I don't think I've ever felt more energized, actually, because it's so rewarding. I think it's so nice to be part of a team that everybody shares the same mission. So yes, I just wanted to say thank you, and hopefully, people can take even one small thing from this and start to think about how you can change what you're doing now to make it more meaningful and accessible to their patients.

[1:04:02] MD: Yes. I'm assuming you would also like to support the Grow Program as well.

[1:04:11] JP: Yes. We've all had patients who benefit from this Grow Program. I mean, their nutritionists are going to the grocery store with the families, and selecting the items that we recommend. It is so supportive, but this is really what these families need. This clinic goes above and beyond. If you say they need oatmeal cereal, but they don't know how to get to the grocery store to buy Earth's Best oatmeal cereal, they will take the family to the grocery store, walk them through it, go through the whole process. It's such a supportive clinic that I think Ð I don't want to speak for you too, Kerry, but I would also say that that's really where our heart and funding would go towards. 

[1:04:54] KP: Yes. It's such a wonderful program and not only do they help with concrete resources, but they have a lot of mental health resources, just anything a family needs. It's truly a wraparound program. Their community outreach workers have helped families navigate the public transit system in Boston. It's just anything you could need. They're an amazing program. We're lucky to be able to partner with them.

[1:05:18] MD: That's amazing. Thank you. Well, y'all, I'm going to pitch Feeding Matters as my donation spot of choice, because I have had families be recipients of the Feeding Matters scholarship. That's how they got to Boston for second opinions. It helps if you know your little one has EOE, or it helps if you know that your little one has a laryngeal cleft, because that's going to change treatment methodologies. Surgery can help in being facetious. I appreciate what y'all do very much.

Now, if folks want to Ð I just dropped my back pillow. If folks want to learn more from y'all, or from your colleagues, could you maybe drop the name of a lecture or two that are being presented at ASHA? Do y'all have this handy?

[1:06:08] KP: Our BMC team is presenting Food Explorers, our feeding therapy program and all the different iterations that we do at feeding therapy at BMC. I'd like to call it our feeding therapy menu. We will be presenting on Saturday afternoon. I want to just say, from our presentation last year, we learned so much from the people that attended our talks, that came up and talked to us after. In particular, the team at Le Bonheur Children's Hospital shared so much information and they were like Ð we learned so much from the other people that came to talk to us. I would say, if you're at ASHA, we would love to connect with everyone.

[1:06:47] JO: Yes. I think I have a talk on preterm feeding. It's like a three-part series, following cases all the way from the NICU to outpatient in that progression. So y'all come over and learn with us if you can.

[1:07:05] MD: Yes. Awesome. Well, thank you. Thank you all so very much for sharing your time and your wisdom. Folks, check us out on First Bite on Instagram, as well as on the land of the faces. We appreciate it when you give us gentle kind words of love on the Apple podcast, it's the purple one. I have to remember which one is the purple one. But if you need us just messages right through there. Ladies, thank you so much for coming on.

[1:07:32] JO: Thank you.

[1:07:33] KP: Thanks for having us. 

[1:07:34] JP: Thank you.

[OUTRO]

[1:07:35] ANNOUNCER: Thank you for joining us for today's course. To complete the course, you must log into your account and complete the quiz and the survey. If you have indicated that you are part of the ASHA registry, and entered both your ASHA number and a complete mailing address in your account profile prior to course completion, we will submit earned CEUs to ASHA. Please allow one to two months from the completion date for your CEUs to reflect on your ASHA transcript. Please note that if this information is missing, we cannot submit to ASHA on your behalf. Thanks again for joining us. We hope to see you next time.

[1:08:16] MD: Feeding Matters guides system-wide changes by uniting caregivers, professionals, and community partners under the Pediatric Feeding Disorder Alliance. What is this alliance? The alliance is an open-access collaborative community focused on achieving strategic goals within three focus areas; education, advocacy, and research. Who is the alliance? It's you. The alliance is open to any person passionate about improving care for children with a pediatric feeding disorder. Today, 187 professionals, caregivers, and partners have joined the alliance. You can join today by visiting the Feeding Matters website at www.feedingmatters.org. Click on the PFD Alliance tab and sign up today. Change is possible when we work together.

That's a wrap, folks. Once again, thank you for listening to First Bite: Fed, Fun, and Functional. I'm your humble yet sassy host, Michelle Dawson, the All-Things PEDs SLP. This podcast is part of a course offered for continuing education through SpeechTherapyPD.com. Please, check out the website if you'd like to learn more about CEU opportunities for this episode, as well as the ones that are archived. As always, remember, feed your mind, feed your soul, be kind and feed those babies.

[END]
FBP 261		Transcript

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