As if incontinence wasn’t difficult enough on its own, when you add in the cost of absorbent products, the condition can become doubly hard to live with. Today we’re joined by Janet Firestone, the National Medicaid account executive for Tranquility, a leading manufacturer of high-quality, super absorbent incontinence care products. For more than 25 years, Janet has been working directly with Medicaid recipients and care coordinators, navigating the Medicaid process to determine coverage and connecting them with authorized suppliers to help them get the incontinence products they need. She shares with us a whole range of insights to help us choose the right absorbent products and then get them paid for, including advice for those who aren’t on Medicare.
You can learn more about Tranquility by clicking here.
Want to talk with a Tranquility professional in person? Call 1-866-865-6101
Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. N AFC is America’s leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers, all available at NAFC.org.
Welcome back to another episode of Life Without Leaks. I’m your host, Bruce Kassover, and joining us today is Steve Gregg, the Executive Director for the National Association for Continence. Welcome Steve.
Steve Gregg: Thank you, Bruce. Great to be here this afternoon.
Bruce Kassover: And joining us today is Janet Firestone. She’s the National Medicaid account executive for Tranquility, which is a leading manufacturer of high-quality, super absorbent incontinence care products. For more than 25 years, she’s been working directly with Medicaid recipients and care coordinators, navigating the Medicaid process to determine coverage and connecting them with an authorized supplier to help them get the incontinence products they need. Welcome Janet!
Janet Firestone: Well, hi there. Thank you for having me today.
Bruce Kassover: And thank you for joining us. We’re really excited because we know this is going to be a topic that a lot of people are really interested in. We’re talking about two things at once that are really incredibly important to people who are, who are struggling with incontinence: One is products themselves and one is getting them paid for. And you know, both of those things are really, really central to a lot of people’s everyday experience. So we’re really excited to have you here.
Now, the first thing I wanted to talk with you about actually is about products themselves, about how to select the right incontinence products.
You know, when you walk down the aisle at the drug store or you see commercials, it can be incredibly confusing. There seems to be more products out there than ever, and it’s probably very difficult for a lot of people to figure out what’s right for them, and they wind up spending a lot of money trying a lot of products that don’t necessarily work.
So maybe you can give us a little bit about, first of all, why it’s important that you do choose the right product and how to recognize that a product is right in the first place.
Janet Firestone: So typically we know that people try anywhere from three to seven products before they find the product that has the right fit or the right absorbency for their needs.
And as you mentioned, you know, you can go to the grocery store and find products, but what I typically see is, anyone who has stress incontinence that might be like coughing, sneezing, light incontinence. they may be able to find, you know, products at their local grocery store or corner pharmacy. But when I’m dealing with helping care professionals or individuals or the family caregivers or folks who qualify under their Medicaid benefits, they need a more absorbent, higher performing product because of their complex healthcare needs.
So it’s important that you try products out so that you can find the perfect fit and the perfect absorbency for your healthcare needs.
Bruce Kassover: So what does qualify as the perfect fit? I mean, is there a certain degree of tightness we should be looking for in, you know, particular areas of the body where things need to be fit more snug or less snug? How do we determine that?
Janet Firestone: Sure. I mean, typically we see that most people in the who qualify under Medicaid are typically choosing a pull-on style product or a tape tab brief. So the pull-on style product may fit more like underwear so they can pull it up and down. It feels more natural to them. And then of course, the tape tab brief, they’re going to use tape tabs to make sure there’s that fit that’s perfect so that there’s no leaks.
Bruce Kassover: What about absorbency? How do you gauge the right amount of absorbency you should be looking for?
Janet Firestone: Products can vary, and that was one of the things I’ve learned in my entire career, that, you know, products can vary. That oftentimes we talk to care professionals or again, family caregivers and they’ll say, you know, we’re trying to take care of them.
And then we’re, you know, changing linens all the time and we can’t go out in public because we’re afraid that there’s going to be an accident. And so it’s super important that you try different products because there are different levels. You know, not all products are made equal. Some are made for light incontinence, like stress incontinence, and some are made for, you know, functional incontinence, maybe somebody has a cognitive or physical disability, therefore they have a higher output of urines. They need to have those super absorbent products. So it’s important to kind of educate yourself on the different types of products. Price samples. Most of the manufacturers I know of, my company Tranquility, will offer a sample to someone to try, and once you try that product and find that perfect fit and perfect absorbency for your needs, that’s when you know that you’re in the right product.
Bruce Kassover: Now I find that interesting because if you were to ask me, if I were looking for a product, I would just try and automatically default to whatever the most absorbent thing available is, because I figure, you know, it sort-of reminds me if you remember the TV show Frazier? There was one scene where his brother in Niles was trying to get him to stop doing something to excess and he says, you know, “Less is more.” And Frazier says, “Well if less is more, imagine how much more more would be!” And I sort-of feel the same way, like is there a reason to not just go for maximum absorbency for everything?
Janet Firestone: Well, I think that again, the majority of the clients or the families or individuals that I’m working with are on Medicaid and so they often don’t realize that they can ask for different products that perform at a higher absorbency level. And so sometimes they may, you know, get a product that’s not working for them and they can ask for another level. And so sometimes I think that it, by default, they may get a product that doesn’t meet their needs. And so we encourage people to ask for the next level if that is available to them.
Bruce Kassover: Okay, that makes sense. Now, what about the concerns about having a moist surface against the skin for a certain amount of time? Could you tell us a little bit about that also?
Janet Firestone: Sure. So if the skin is exposed to urine within 15 minutes, it can start to show signs of irritation and then can lead to much more complex issues such as skin breakdown or even decubitus ulcers, those types of things.
And so you can get bacterial growth. There’s all sorts of complications that can happen if the skin is moist from urine. And so it’s important, again, when you’re dealing with individuals or caregivers who are caring for someone who has a complex healthcare need, which is typically those who are on Medicaid, you want to make sure that you’re keeping the skin integrity dry and so that you are keeping them dry so that they can sleep through the night and so that the caregiver is getting a good night’s rest. And there’s so many other variables that go into keeping someone dry in their care.
Bruce Kassover: Yeah, I guess complex is the word. Now one other thing, well there’s, there’s another element I wanted to ask you about, and that is material, because there’s a whole range of different sorts of materials and I think there might even be some, some newer types of material that are out there. What are your thoughts on that?
Janet Firestone: Well, certainly again, manufacturers are using various super absorbent super absorbent polymers, and so we refer to that as SAP in the industry.
And so you know, various polymers and technology as far as you know, nonwovens and materials that are used to make products that are more super absorbent. And again, those who are dealing with complex healthcare needs that are covered, their products are covered by Medicaid. They want to be in those products that are super absorbent.
So it’s important that they, as their family or their caregiver or their care professional, help them find those products that are typically offered through medical supply providers, such as, you know, DMEs, durable medical equipment, or HMEs, home medical equipment or pharmacies, you’re going to find the more super absorbent products typically in those settings.
Bruce Kassover: Okay, that makes sense. Now you’re using the word “super absorbent.” Is that like an industry standard term or does it have a particular technical meaning that we should be aware of?
Janet Firestone: Well that term is used because they absorb more fluid, and so it’s so important that the product absorb the urine, lock it in, and keep the skin dry so that they prevent all sorts of complications that can come from urine being exposed to the skin.
Bruce Kassover: Okay, I’m with you now. This might actually be a good time to talk a little bit about Tranquility because, you know, that’s the company you’re associated with, and you know, their expertise is in connecting people with products. Maybe you could tell us a little bit about that.
Janet Firestone: Sure. So my role at Tranquility is to help care professionals and again, individuals or family caregivers navigate the process of getting products covered by their Medicaid benefits. Most state Medicaid programs cover products at no cost to the individual, and what I found is over the years, many of the care professionals, they weren’t really clear on how to help their clients navigate that.
So we at Tranquility, we get calls and emails every single day. Trying to help care professionals navigate their state’s particular benefit. So we’ll do virtual or in-person in-services and educate. It could be case managers at an area agency on aging, it could be social workers at a county board of developmental disability, or public health nurses, so help educate them on their particular state’s benefits, so there’s, you know, criteria, age requirements, documentation that’s required. Certain diagnoses that would lead to the cause of incontinence. So those are really important pieces to educate the care professionals so that they can help their clients navigate this process.
And then on the other side, when you’re dealing with individuals or the family caregivers, they often don’t even know that this benefit exists. I can’t tell you how often I speak to, say, a parent caring for a child with complex healthcare needs and the child’s 12 years old and maybe has Angelman’s syndrome and the family budgets every single month to get those products that they need that are super absorbent and can meet the needs of their child with this complex healthcare need, and they’re budgeting every month and then all of a sudden they say, “Wait a minute. We didn’t realize that they qualified way back when they would’ve, you know, aged three or four.” And so we help them navigate that process, find those super absorbent, higher performing products because of their complex healthcare needs, and then help them navigate “what does my state cover, what is the documentation that’s needed,” and then direct them to suppliers who can help them get that product under their particular Medicaid plan.
Bruce Kassover: It sounds incredibly exhausting.
Janet Firestone: It is. I would say in the 25-plus years that I’ve been doing this, I probably indirectly or directly have tried to help thousands of families or care professionals. You know, I myself, I worked in home healthcare and we would notice prior to doing this, in the last 20-plus years, we would notice that we would run into individuals who qualified for this benefit and we ourselves didn’t really understand it. So, you know, we were reaching out to the manufacturers and saying, “You know, we need to get samples. Can you help us navigate this?” And so it became such a passion that I have the great fortune of working for someone like Tranquility who’s committed to, you know, uplifting the lives of those they serve.
And so it’s important for us to educate care professionals on their state benefits. How their clients can qualify and more importantly, you know, educate them on the different absorbencies of products so that we can get better performing products for people who need it most. And that would be individuals who qualify under Medicaid because of, you know, maybe they have intellectual disabilities or maybe cerebral palsy or maybe it’s an elderly person who’s dealing, you know, their family’s caring for them, and they have dementia or have had a stroke. So it’s so important that we get the proper products and then help them navigate this process so that they can get the products that they need.
Bruce Kassover: That’s encouraging. I suppose that maybe to help people who do feel a little bit confused, we could talk a little bit about some of the super basics of the program. First, can you talk a little bit about the difference between Medicare and Medicaid? Because I know a lot of people do get them confused.
Janet Firestone: They do. So Medicaid, I always say remember the word “aid” for state programs and Medicare, remember the word “care” for federal programs. And so the Medicaid benefit is what covers the incontinence.
And typically, again, you’re seeing that benefit being available to someone who’s born with a complex healthcare need. So we see that most states cover the products starting at about age three or four, and what happens is when you think of a healthy child, you know, learning how to potty train or self-toilet, that usually occurs somewhere between maybe 18 to 24 months of age, sometimes a little earlier, sometimes a little later.
Then, once the state Medicaid benefit starts to kick in, usually around age three or four, because if a child is still needing incontinence products at around age three or four, again, we’re probably dealing with maybe a cognitive or a physical disability such as intellectual disabilities or, again, cerebral palsy, something that is the cause of their incontinence, and they would qualify for the products at no cost to their family under Medicaid.
Bruce Kassover: And what about adults?
Janet Firestone: Sure. As the aging population is, if I’m a senior and I’m on Medicaid because of my income, or I’m on Medicaid because I’ve spent down my assets and I’m now on Medicaid and I have diagnosis that would lead to the cause of my incontinence, I, too, would be eligible for it. So we work with families, caregivers every single day, and again, care professionals every single day, helping them navigate this process.
Bruce Kassover: Okay, so now what you do need – now tell me if I’m mistaken, sort-of essential for anybody, particularly for adults who are qualifying for these products under Medicaid, is that they do need a qualifying diagnosis, correct.
Janet Firestone: Correct. In most states, they do require that you provide documentation. So typically when we help families and we direct them to suppliers, we’re working again with, you know, DMEs, durable medical equipment, HME, home medical equipment, or pharmacies who are Medicaid suppliers. And then what we’ll do is we’ll help them kind of connect the dots of, you know, introducing them to the supplier.
And then getting samples of a more super absorbent product so it meets their complex care needs. And then that DME, HME or pharmacy will start to communicate with their physician to gather the required documentation such as the diagnosis that has led to the cause of their incontinence, any type of demographic information that they need to get there, such as their Medicaid ID and all that, that is needed to set up the product, the services, and then typically they’ll go over what their state covers. In some states, you may be able to get a certain amount of pull-on style products or briefs, tape-tab briefs. Or in some states you may be able to get underpads and booster pads. You know, booster pads are a wonderful way to help boost the absorbency of a primary product, especially again, when you’re dealing with individuals who need a higher level of care and higher performing products, you know, booster pads are a great way to increase that absorbency.
So the DME, HME or pharmacy typically will then take over to help them understand specifically what products may be covered and then helping them get those higher quality products.
Bruce Kassover: Is there a family of diagnoses that you find are typically covered? And if so, what would that family of diagnoses be?
Janet Firestone: Sure. And the many years that I’ve been doing this, some of the most common would be, you know, intellectual disabilities, cerebral palsies, spina bifida, Angelman syndrome. That’s a lot of the conditions that I see in the younger clients. And then again, in the older clients that we service, I would say more, you know, dementia, Alzheimer’s, maybe stroke, things that are going to, you know, cause the inability to self-toilet or get, you know, to go to the bathroom on their own, basically.
Bruce Kassover: Do you find that diagnoses of stress, urinary incontinence, urge incontinence, things of that nature also by themselves qualify? Or does there have to be another physical condition that goes along with it?
Janet Firestone: Typically I see that there has to be another condition that goes along with it. There are some states, and I don’t know those off the top of my head, that stress or urge incontinence is covered. But we typically see that most states do require that there be a cause diagnosis that leads to the cause of incontinence.
Bruce Kassover: And now even when you do have that diagnosis, do you also need to get a prior authorization from the physician?
Janet Firestone: And again, each state is different. So what we do is once we help them find the product that fits their needs, then we help guide them to a supplier. That supplier can go over exactly what the criteria is for their particular state. So in some states, it may just be a prescription from the physician, or in some states there may be, you know, a letter of medical necessity required, or you know, certificate of medical needs. So there’s various documentation that’s required in various states.
Bruce Kassover: So I guess the real lesson is to educate yourself and make sure that the healthcare professionals you’re working with are educated on it also.
Janet Firestone: Correct. And so that’s why we find it so important. And again, we get calls every single day from care professionals who reach out to us and say, “Hey, you know, our team’s getting together, can you help us sort-of navigate and, so that we understand, so that we can educate clients on how you know, what the criteria is for our particular state?”
And so then we’ll partner with some of the suppliers to make sure that we’re educating properly. And then once that’s done, we’ll help connect their clients or individuals who call us on their own and help connect them to these suppliers who can help them navigate the process.
Bruce Kassover: Now, does Tranquility actually help with the paperwork itself also?
Janet Firestone: No, we’re just the manufacturer of a super absorbent brand that is highly regarded and highly requested by individuals who need super absorbent products under their Medicaid benefits. And so that’s where we came int, you know, so many people call us every single day saying, “We have tried, you know, all these products, we’ve, you know, tried those three-to-seven products and we have concluded that your product is what meets the care needs of our family member. Help us find your product in our state. And so that’s where we help them navigate to the type… the suppliers in their particular state who offer our brand as an option for their loved one.
Bruce Kassover: Excellent. Now, what do I do if I’m somebody who wants to make use of your product or, you know, an absorbent in general, but I don’t qualify for Medicaid? Are there other options to help make these products more affordable?
Janet Firestone: Oh, sure. So one of the things that I always remind people, sometimes you think about, “Oh, if I buy a the least expensive product at the store, you know, that’s going to work for me.”
I think you used the story earlier, less is more. You know, you may use more products. And so when you’re using a more absorbent, super absorbent product, you typically use fewer products because it’s absorbing more fluid, more urine. And so, there’s a few things. You know, if you don’t have Medicaid and you’re paying out of pocket, you could buy our brand of products through online suppliers.
You could buy your products at you know, specialized, you know, pharmacies or DMEs, HMEs. There are different programs. If you’re a veteran, you may qualify for products at no cost under the veteran’s benefit. So call our team, you know, we’re available to help you navigate based on, you know, what your payor sources, if it’s private pay, if you’re a veteran, if it’s Medicaid, there’s even some, a program called TRICARE Echo that helps cover products for military, active military families who are caring for a child with complex healthcare needs. There’s sometimes you can buy products and submit those receipts to your FSA. If you’re a working family or working professional, there’s. You know, certainly if you don’t have the means, there might be a diaper bank in your community that could help you get products.
And even recently, my own parents have a Medicare Advantage program that allows them to buy certain amounts of products each year. So there’s a growing number of ways that that may help people get products. And certainly as a company, we’re committed to helping people understand that.
Bruce Kassover: I’m glad you mentioned diaper banks, because that’s one resource I think a lot of people are entirely unfamiliar with, and it’s really an amazing thing that there really are these places where people can go and you know, get the products they need from, you know, really an amazingly altruistic source.
So I definitely recommend people, you know, if they’re, they’re having trouble affording things to look for diaper banks in their area. Just do a search online. There’s a lot more out there than you may realize.
Now Tranquility themselves, so tell me, if we want to find out more about your products, how do we find them – online or, or can we find them in store? Where, where could we find your products?
Janet Firestone: Well, you can search “Tranquility products.” I know a lot of people search Tranquility and Medicaid because we get emails and phone calls every single day trying to help people find our products. And so, we have a website, www.tranquilityproducts.com, and if you would like to try sample and you need help navigating and finding a source for your products, whether you’re getting products under Medicaid, you can call our customer care number, which is 1-866-865-6101. Again, 866-865-6101.
Bruce Kassover: Excellent, and we’ll put links to the website and that phone number in the show notes, as well, so anybody who’s listening, if you don’t have a pen handy, don’t worry about it. It’s there for you.
Steve Gregg: So, Janet, do you know of the Absorbent Task Force that was created by the National Association for Continence?
Janet Firestone: I’m aware of it and I know that our company is part of that, but I myself have not participated.
Steve Gregg: Well, let me tell you a little bit. In 2012, the state of South Carolina came to our organization and said, “We think we have a problem, particularly with Medicaid recipients, and that is there are no national standards for absorbent products.” Which means that in my state of South Carolina, when they put out products for bid to be on the formulary list so that your Medicaid folks can receive products, the only thing they really have to evaluate those products on is price.
And we feel that those Medicaid patients, assuming they qualify for Medicaid, should get a product that meets some form of standards. So our organization has created a consensus-based group with most manufacturers and a variety of laboratories to create quality standards so that these individuals that you’re talking about – caregivers, sometimes parents, et cetera – when they contact their state and find out they’re eligible for products, they can get a product that is actually safe and good for that individual. And we’re, we’re quite proud of the work we’ve done, and we couldn’t have done it without organizations like yours. So a simple thank you from us, a heartfelt thank you is really necessary to make sure that those individuals that qualify for Medicaid are getting a quality product to protect them and keep them dry.
Janet Firestone: Sure. I mean, that’s fantastic. We, again, we hear from care professionals, individuals, caregivers, every single day who say, “You know, we’re dealing with a much higher level of incontinence, so we need those super absorbent products.” You know, we’re not dealing with just stress incontinence. We’re typically caring for someone who has more, as I mentioned, maybe functional incontinence, where it’s a cognitive or physical disability that is leading to the cause of their incontinence. So it’s so important that they have a higher quality, higher absorbent product.
Steve Gregg: Well, you know, that’s really important. We helped some patients a few years ago, families, because in one state, the child qualified I think with developmental issues. And the problem was as they would reapply each year, the state would say, “Well, there’s no reason that a 12-year-old should be wearing an in incontinent product, a diaper. They should have already learned how to toilet.”
We had to go back and say, you know, these are developmental issues and while the child may be chronologically 12, mentally they could be two. And so there are exceptions to the way a lot of people don’t think about how to protect those individuals. And so you must get those kind of calls all the time, you know, from frantic caregivers and parents like, “What do we do? What do we do?”
Janet Firestone: Every single day. I mean, it’s, that’s what drives me every single day, because I wake up and I know that I’m going to talk to another parent and I know that I’m going to change somebody’s life because we’re going to help them find a product that works for their child who has this complex healthcare need. And then it’s, it’s life-changing. I mean something that we take for granted that they’re dealing with every single day, and you know that they are going to be likely changing a product on their child maybe for life. And you know, I always share a story. I had a grandmother that I was working with and she was caring for her granddaughter who had cerebral palsy, and she was using our products and never missed a day at going to her special school or the programs that she was able to go to.
And then at one point the product was changed out and she started to develop, you know, a skin breakdown and then had a fever and they took her to the emergency room. She was admitted to the hospital, and then when she was admitted to the hospital, it was exposed to C Diff. I mean, it was this whole complex, crazy story, and it was all because of the product that she used was soaking wet and her skin was exposed, and then she got an infection and it led to all these other complications. So the passion that I have for the products that people can get and that they should get, it’s for life typically in many of these situations. And it’s, again, not the type of incontinence that might just be related to coughing or sneezing.
Steve Gregg: We hear that a lot. Because as you pointed out, it’s so hard for many individuals to find the right product for themselves or a loved one, and when they find it and then all of a sudden the product’s switched, you know, it is in some ways the most honest form of brand loyalty you can find. Right, so if someone has that, they can contact you and you will help them, particularly if they’ve been switched un involuntarily?
Janet Firestone: Contact the toll-free number that I provided and our team will help look in their state, who offers, you know, higher absorbent products for their Medicaid benefit, and then we can help them navigate that process.
Steve Gregg: Great. Just one last question, or maybe you have some advice. We hear a great deal about the challenges that patients and caregivers have in discussing incontinence-related issues with primary care physicians, maybe because of the way they either were never trained about incontinence or, you know, we know that there are individuals that are sort-of told it’s a sign of aging and or childbirth, or heaven knows what. If a family or an individual has a challenge with a primary care physician as opposed to a specialist urogyn or a urologist, can they also reach that 800 number and say, “look, my doctor’s not paying attention to me and I’m having a hard time qualifying, even though I think I meet all the criteria?”
Janet Firestone: Well, we typically again, we work sort-of in tandem with some of our partner suppliers and they can help them.
They can actually do that process outreach, help them reach out to their physician and you know, explain that this individual has Medicaid, that they’re asking for products, can you provide us the documentation that, you know, shows that they have the diagnosis that they’re saying, or those types of things.
So they’re going to help them navigate that process. So I think sometimes, you know, yes, we hear that more frequently. On the Medicaid side, we don’t hear that as frequently with the children that we’re servicing because it’s obviously a diagnosis that they were typically born with. And so they’re, that started right out of the gate, so to speak, that they’re dealing with incontinence.
But when you are dealing with an older population, sometimes, you know, they’d, they’re more or less likely to have that comfort zone of talking with their physician about it. And so we can try to help them. You know, talk to the supplier, which might be an HME, DME or pharmacy, and then they would reach out to the physician to help gather the information that’s needed.
Steve Gregg: It sounds like there’s an opportunity for NAFC to make sure that we are encouraging people not to give up. That there are solutions available and I’m sure we will provide links and phone numbers so that nobody should ever give up and feel I’m not being heard or I can’t find a solution. Because it sounds like you’re saying there almost always is a viable solution, assuming they qualify for Medicaid benefits.
Janet Firestone: Yes, I think that’s exactly right. Don’t give up. I think that there’s always solutions. I mean, again, I’ve been doing this 25 plus years. Every single month or year I’m learning about new programs that are out there. Again, I mentioned earlier, there’s different like state waiver programs. I work a lot with area agencies on aging and in some states, they have different waiver programs that, if the Medicaid doesn’t cover it, maybe the waiver will pick up the products. So don’t give up. Find that product that works for you. Call manufacturers that make super absorbency like Tranquility. We’re here to help guide you to finding a better product for your loved one because of a life of complex healthcare needs, and then helping navigate that process so that we can get you into products, and help you find programs that may exist in your state or in your community that would help cover the cost.
Steve Gregg: Well, we’re so happy to have you join us and to share that information. That’s really terrific.
Janet Firestone: Well, thank you. I’m so pleased to be here.
Bruce Kassover: There really is nothing more encouraging than that. So thank you, Janet; we do appreciate you joining us and we look forward to speaking with you soon.
Janet Firestone: Thank you for having me.
Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin McLeod. More information about NAFC is available online at NAFC.org.