On this month’s episode we explore three topics of importance for many in the ALS community. First up, we connected with Michelle Trautman of Perham, Minnesota and Daniel Vance from Team Gleason in New Orleans to discuss the process of voice banking. We then welcomed Dr. Ezgi Tiryaki into our studio to talk through the current model of clinical care for ALS. And lastly, we sat down with Donnie Raveling of St. Paul and Jennifer Myhre from The ALS Association to scratch the surface on the topic of home healthcare.
Transcript:
Mike (narration): Hello and welcome to episode two of Connecting ALS. I'm your host Mike Stephenson from the Minnesota, North Dakota, South Dakota Chapter of the ALS Association. On this month's episode we explore three topics of importance for many in the ALS community. First up, we connected with Michelle Trautman of Perham, Minnesota and Daniel Vance from Team Gleason in New Orleans to discuss the process of voice banking. We then welcomed Dr. Ezgi Tiryaki into our studio to talk through the current model of clinical care for ALS. Lastly, we sat down with Donnie Raveling of St. Paul and Jennifer Myhre from the ALS Association to scratch the surface on the topic of home health care.
Shortly after Michelle Trautman of Perham, Minnesota was diagnosed with ALS, one of her clinical specialists identified her as a strong candidate for voice banking.She's currently creating a pair of synthesized voices that she may eventually need as her disease progresses and was gracious enough to share her experience with us.
Mike (in-studio): So on the phone with us today from Perham, Minnesota is Michelle Trautman. Welcome to the show Michele and thanks for being with us.
Michelle (on phone): Well, thanks for having me on Mike.
Mike: And if you don't mind,just for the context of our listeners, can you tell us a little bit about yourself and, if you could, how you arrived at an ALS diagnosis?
Michelle: Sure, well I, um,am 53 yes how old am I now? Last year, about March, I started having some symptoms in my left arm. Thought I had just slept funny. That went on for quite a while and just noticed some more weakness and finally a friend of ours who's a physical therapist said "eh, you got something going on here you need to get checked out".
Mike: Wow and do you remember kind of as you're going through that, what was going through your mind at the time? Were you thinking from an early on point this may be something very serious?
Michelle: You know what, I never really did. I just figured I had tweaked a muscle. A few years back I had some neck issues, thought maybe something had tweaked again in my neck. Never once thought of ALS.
Mike: Right, right.
Michelle: You know, I mean, because most of the research I've done I wasn't one of the prime candidates, but lo and behold here we are.
Mike: Sure, sure. Well, thank you very much Michelle for being willing to share your story and also for being open to discussing the topic I want to get into today, which is voice banking. And, for anyone who is unfamiliar with the concept, voice banking is essentially the recording of one's voice and speech patterns for the creation of a synthesized voice to be used with software and speech generating devices in the event that ALS eventually robs you of your ability to verbally communicate, which does happen unfortunately for many people living with the disease.
There's also message banking, which is a simple recording of specific messages or phrases in your own voice that you can access at any time, we should kind of make that distinction between voice banking and message banking, but Michelle when did you first learn about voice banking as a possibility?
Michelle: Um, last November on my first visit to Mayo when I met with Kristin.
Mike: Oh Kristin from from the ALS Association?
Michelle: Yes, she told me I was kind of in that sweet spot, I had a lot of really good options of people who could help me out with that.
Mike: And, what were your what was your initial reaction to hearing about that? What do you think about the possibility?
Michelle: I thought it was a good one because I wanted something I could take control of. When you're getting this diagnosis you feel very out of control, so it was something I could be in control of for my life.
Mike: And, as you kind of weighed in on that decision about whether or not to do voice banking, what in addition to having that control and being able to do something about it, were there other motivating factors for you?
Michelle: Yeah, I wanted to be able to have something that sounded like me because you hear so many things that sound nothing like what I would think the person was. I didn't really want to sound like a computer, if and when I need it. And I wanted key things, wanted it to be more me where I got to say stuff in my tone and how I would say it.
Mike: That makes a lot of sense. I hear from some people living with ALS that the primary reason that they do look into this sort of technology is because they don't want that voice that sounds robotic. I think many folks associate synthesized voice with the late Dr. Stephen Hawking, who of course didn't have access to voice banking technology at the time he lost his voice but. You, it sounds like you wanted something that was going to be more you, more connected to your identity.
Michelle: Exactly and I wanted I also read a couple story books so I had something to leave behind.
Mike: And where was it that you completed your recordings? Did you go to a nearby clinic or University?
Michelle: I went Minnesota State University Moorhead with Maribeth Plankers, there are an awesome group. She used the Audacity system and yeah we spent about a total of three hours doing, on different days, but yeah it was, it was a really great experience. I would, you know if someone wanted to do that I would highly recommend it.
Mike: And, can you walk us through that process a little bit? You go, and in your case you went to the University, and do you sit down in kind of like a sound booth or a lab of some sort?
Michelle: You're actually in a soundproof booth, which is kind of, oddly very relaxing and calming. You were in there with two of her grad students and they kind of prompt you when to say what and you know you say hello and they pause you and type in hello and then you get to listen to yourself say it back and and so yeah it's kind of an interesting experience, but I was a little overwhelmed at first, but yeah like I said I got very relaxed and we had a good time with it.
Mike: Do you kind of get into a rhythm I suppose as you're reading through those lines you start to anticipate what they'll need in terms of levels and and pronunciation and that kind of thing?
Michelle: Yeah, you do and you know if they noticed that I was getting tired we'd take a little break and get some water and that kind of thing so. Like I said, the first session was only about an hour, the second one was two; that one, and it was a little warmer day so that little closed in box we opened it up a couple times to let in some fresh air. Get three bodies in there, it gets a little cozy, but.
Mike: Yeah, and was it, was it a little bit draining just to, I think about having to speak and recite those kind of lines for more than an hour; did it wear you out a little bit, kind of going through that so much at once?
Michelle: A little bit because not only were we doing that I also had the giant binder on my lap, flipping through it, and as my left arm is weak anyhow so that was kind of a struggle there after awhile just holding the binder, so.
Mike: Sure and so, you wrapped that up. When did you, when was your last session? When did you complete the process?
Michelle: May 3rd.
Mike: oh, ok, so not that long ago.
Michelle: Not that long ago, yeah. The first one I went was in January and then we kind of waited for the weather to get a little nicer.
Mike: So, have you had a chance to hear your synthesized voice? I know it takes a while for them to put that together. Have they sent it back to you yet?
Michelle: I haven't got all of it back, but they did let me listen to a little bit that first day in January after I had read the storybook, and so that was kind of fun. They said, "oh you should hear this"and it was neat. I didn't sound quite as Minnie Mouseish as I thought I would.
Mike: Sure.Yeah, hearing your, even if it's just a straight recording, hearing your own voice back and sometimes be a little bit strange. It's not necessarily how you hear yourself in your head.
Michelle: Right. So that was really different.
Mike: So, when they send you your synth voice back, your full voice back, are you planning to use that? I know ModelTalker and Predictable and some of the other software pieces that we can put on tablets now, have they they told you how you might be able to use it?
Michelle: She did say there was a way to, because they'll send me like a zip drive or whatever and we could put that in. I'm also gonna try the Acapela through the ALS Association. I've been set up for that, so we're gonna give that one a try too just to kind of compare, see which one we think sounds better with my voice.
Mike: Yeah, that's one I want to talk to you about because, like most technology and software, this is an area that's evolving very quickly. It seems like every few months there's a new version or tool that in some way streamlines things just a bit more and some of these programs even make it possible to record at home with a headset mic similar to the one that you're using to speak with us today. And there's that new software you mentioned, Acapela, that I'm told produces really high quality results in less time and I know that the ALS Association and Team Gleason have started to utilize it. What do they tell you about what's different between Acapela and Audacity, what you were using before?
Michelle: I think Acapela is more of my synthesized voice that I will say like three hundred and twenty phrases and then they'll take that to convert into my voice. Where the Audacity I think is just my voice in snippets, if I understand correctly.
Mike: Okay, sure, that makes sense. Michelle,we often talk about ALS being a disease of loss, losing kind of one thing after another, and to lose your voice something that's very much tied to your identity of course that can be, I can't imagine how difficult that is. Thanks to some of these technological advancements some people are utilizing technology like voice banking to get a piece of their vocal identity back. What would you say to others that are in a similar position and are maybe considering going down this path, but are uncertain about it and may have questions, what would you say to them?
Michelle: I would tell them they should give it a try. I mean, I'm not gonna say it's for everybody, but definitely look into it, discuss it with your family. I mean we sat down as a family, all eight of us, and weighed the pros and cons and we just felt it was something worth doing. I mean if you don't want to use it you don't have to, but it's there.
Mike: Sure.
Michelle: You know, do it while you can while your voice is strong, don't wait.
Mike: Right, something that's good to have down the road. Was it something that your family specifically, was it a topic that they wanted to talk about and say, you know, your voice is important to us.
Michelle: They did say that. My son said he wanted me to be able to say, he wanted to hear his Clayton Joshua no matter what when he did something wrong, so you know there was that. So, you know, there was just certain things that we wanted we knew we wanted to record. My kids have had this long-standing joke since they were in high school that there's a word mom won't say. I won't say it now. However, on the end of my last recording I did say it so, when I can't have a voice I can play it for them. They can have it for a later date, so yeah just that kind of stuff you know.
Mike: Yeah, things that are very personal to you, very important to you and your loved ones. Just back to Acapela really quickly, did they tell you when you're gonna be able to record that or is it kind of up to you at this point?
Michelle: It's kind of up to meat this point. They they sent me everything, I just need to get it set upon my laptop. You do a test of like twenty phrases and then they'll get back to me and let me know if the quality is good, if they think my voice is okay, and that kind of thing so you don't spend, you know, three hours recording and then they say "oh, we can't use any of it". So, that's kind of nice. So you do a test first.
Mike: Okay.
Michelle: And then they'll let you know how it's going.
Mike: That makes sense. Well I think this episode will probably air before we have a chance to hear your synthesized voice, but if you wouldn't mind we can reconnect with you after you've gone through that because we can kind of follow up on how that turned out and see what you thought.
Michelle: Yeah, that'd be great!
Mike: Cool. Thank you very much for the time today Michelle. We are so grateful for your perspective and your willingness to share your story.
Michelle: Well thank you for having me, it's been quite an honor. I'm glad Kristin suggested it.
Mike (narration): We wanted to follow up the conversation with Michelle by introducing an expert invoice banking and we found exactly that in Daniel Vance of Team Gleason in New Orleans. Daniel is an Occupational Therapist by trade and as part of Team Gleason is helping families all over the country with their communication needs. We stole a few minutes of his time for a phone call on the subject.
Mike (in studio): So, I'm on the phone today with Daniel Vance of Team Gleason to continue the conversation that Michelle Trautman and I had about voice banking. Welcome to the podcast Daniel, we are excited to chat with you.
Daniel: Thank You.
Mike: Daniel is an Equipment and Technology Coordinator and Specialist with the Team Gleason foundation and rather than have me mess up talking about what y'all do Daniel, can you tell our listeners a little bit about what exactly Team Gleason does for families living with ALS?
Daniel: Sure, I'd be happy to. So, Team Gleason kind of operates with several different initiatives that we provide assistance with and I guess I'll start was saying we tend to try and assist every individual who comes to us in whatever way we can best do so.
Mike: Sure.
Daniel: The general assistance that we provide or the most commonly requested are for power wheelchairs. We provide assistance with the seat elevator portion of the chair since that is typically denied by insurance and we strongly believe that it's a beneficial aspect to the chair for transfers, for social engagement, for ability to reach items on shelves, for just a slew of different reasons. So, that's typically the most generally requested power wheelchair assistance. With speech generating devices we often assist with the copay. Again, insurance will typically cover about eighty percent, which leaves a copay of about twenty percent, so we often work with manufacturers to cover that twenty percent cost. If there's, for whatever reason, an individual either cannot purchase their own, insurance denied it completely, or for the situation it's not necessary for them to have a speech generating device because they still have good vocal quality, but they have lost access to a computer based on just the progression of ALS and they no longer have access with their hands, we can also place long-term loaners of equipment. So, with speech generating devices it's kind of a dual assistance where it's either providing assistance with the copay to by personal device or linking them with a long-term loaner. Then we provide assistance with message banking and voice banking where we will pay the cost of either ModelTalker, Acapela, or both depending on the person's personal preferences and we also provide some technical support and assistance on the backend of making sure they're able to download the program's work through the programs appropriately and just providing that support through throughout the process.
Mike: Sure.
Daniel: We also have a program, which is our Adventures program where we will assist individuals in continuing to live their lives and goon trips or vacations or kind of those meaningful experiences whether that's attending a football game, attending a graduation of a child, attending a wedding, or going on kind of some family trip. So, we provide several of those every year.
Mike: Yeah, which is great!
Daniel: So, those are kind of the big aspects we also have Gleason House here in New Orleans where we have several residents that we provide care for on a daily basis.
Mike: It's pretty amazing Daniel what the organization has been able to do in a relatively short amount of time. I think Steve Gleason's story has inspired millions of people to really get involved with the cause and the foundation of which you're a part has done some incredible work both in terms of providing equipment like you mentioned and services, but also legislatively with the Steve Gleason Act and more recently the Enduring Voices Act, which of course ensures access to communication devices for those in need.
I feel like you and I could spend hours talking about a number of ALS related topics, but what I'm really hoping to tap into today is your expertise about voice banking specifically, which is a process that has evolved quite a bit just in the last few years and more people living with ALS are choosing to have synthesized voices created.
We spoke to Michelle Trautman of Perham, Minnesota about her experience with voice banking, but Daniel what are you hearing from individuals living with ALS about why they want to explore this option?
Daniel: So, typically, I would say a lot of times, the process happens where an individual may not be reaching out to us directly for voice banking, but for something else. And we attempt to call every individual personally and have a conversation with them or the family, depending on the situation, just to get a feeling of the situation and to offer things like voice banking and message banking. So, a lot of times we'll go through and discuss the process for them and kind of mention it to them. And so, I think once whether it's they've reached out to us or we've reached out to them for assistance and another kind of one of our initiatives, the rationale or the reasoning is that there's so much, I guess, emotion and there's so much personalization in a voice that a computerized voice cannot really portray and there is something lost with that if an individual has lost their voice. So, that's part of it. There is often a very emotional part of the conversation where they, an individual, is kind of facing that ultimate kind of way of doing it. So, the way we like to address it is looking at it more as, almost more of an insurance that you have this available to you
Mike: Yes, should you need it down the line.
Daniel: should you need it down the line as opposed to not having it, exactly. As opposed to not having it, if you don't. So, a lot of it is that; wanting to have some sort of personal part of it. The downside I guess with the voice banking itself is it's still ultimately a synthesized voice. So, it still is missing that emotional connotation. It is still missing the different ways for instance that you might say yes; where sometimes it's a sarcastic yes, sometimes it's a serious yes sometimes and so you're going to get one version of yes and not kind of all of those fine minutiae that may come along with a yes or a hmmhmm or
Mike: Sure.
Daniel: whatever that may be. So, again, when I'm when I'm talking about this we we talk about both typically message banking and voice banking. With voice banking being really strong on those novel utterances, those things that I'm not gonna think of needing to say down the line and having that more personal sounding voice that reflects your voice, but being able to say whatever it is that comes up in that moment.
Mike: Yeah and for a number of folks that we've talked to about voice banking specifically they speak about identity and how their voice is very much tied to their identity and since ALS is a disease of loss and they feel like they're losing so much, to lose the sound of their voice and the way that they communicate in that way is so difficult. So, getting that back in some small portion with the synthesized voice that sounds more like their own is really important to them; is that kind of what the feedback you hear is as well?
Daniel: That's definitely a part of it and I feel like those instances where someone has heard their synthesized voice for the first time is always a really amazing experience, especially for I feel like almost more so sometimes for the caretakers or the loved ones where they've now gotten to rehear or get to hear that voice and the connection that they have with that person.
Mike: Absolutely, absolutely. And like many things in this age and the world we live in now, it seems like voice banking software is improving pretty rapidly and changing pretty rapidly; how do you and Team Gleason stay on top of the most recent iterations? Are you conducting a lot of your own research or are these software developers, knowing now what you all do,are they approaching you with solutions? How does that kind of unfold?
Daniel: It's kind of a mix of both. So, I mean we're constantly in talks with and working with ModelTalker and Acappela since they're two of our partners. In addition to them, we've been approached by some different organizations and different companies and we're constantly kind of pushing at finding better ways of doing this; whether it's the utilization of less recordings, the ability to do it in a home environment as opposed to having to go somewhere, the ability to do it quicker. I think kind of a good example of that is about seven years ago when Steve recorded his voice he needed over 3,000 phrases, it was several thousand dollars to complete, it had to be done with professional equipment; so now someone, even just in that seven years is a long time, but I mean it's also a kind of in-development of things, it's a pretty short time.
Mike: Yeah.
Daniel: You can do it in your house, you can do with your personal computer, you can do it with around 350, 250 to 400 is kind of a pretty standard range of phrases, it's not in the thousands of dollars, you can do it with a $40 microphone that you can purchase directly from Amazon; so the requirements on end users' side is far less. So, that's getting better. At this point, it's still you have to talk pretty clearly, if you have signs of dysarthria your recorded, synthesized voice is going to have those same sort of characteristics. So, it's finding ways of allowing it to happen later in the progression, it's finding ways of getting everyday technology to also kind of have this built in. So, working with major manufacturers and how you can get their voice recognition software, their systems to also interpret this as speech.
Mike: Right and
Daniel: So, it's a lot of different avenues of partnering with companies to do research and partnering with companies to push the technology.
Mike: For sure and a lot of it is exciting because it is changing so quickly and improving so quickly. And, you mentioned, now being able to record in home and being able to record with your own, simpler setup; that's meant much, particularly for folks that live in rural areas that may not have access to universities or labs or sound booths where they can go and record these kind of things. I mean, as recently as a few years ago folks would be spending hours, spread out over the course of several days, in a booth, to record these phonemically balanced phrases that would then be turned into their synthesized voice, but now, like you said, with Acapela and even ModelTalker to a degree, they can record that at home and that's a much simpler process.
Daniel: Yes.
Mike: And speaking of Acapela, that seems like that's now the latest and greatest thing and some of the samples that I've heard sound really good, really accurate. Are you, have you been impressed with what Acapela's been able to do?
Daniel: So, I've been happy. So, I made a voice recently with Acapela and I was pretty impressed with it, with their their kind of suggested minimum of 350 recordings. ModelTalker is also pushing towards that side. Their new minimum inventory is 215, with those suggested of 400 voices. So, both companies are really pushing to to make it as easy on the end-user as possible to kind of get the process completed.
Mike: That's great.
Daniel: So, yeah. I've been happy with with Acapela thus far. I think one of the things that stands out to me for them is that they have the opportunity, what John Costello is calling the double dip. So, the ability to record both your message banking and creating a synthesized voice.
Mike: Ok.
Daniel: So, one of the things that they're allowing, that's pretty unique, is the opportunity to upload your message banked messages and then using those messages create a synthesized voice.
Mike: Yeah, that's a, well that's a game-changer.
Daniel: Yeah.
Mike: Because for many people who may have an opportunity to do this once in a short period of time, if you can knock out both of those things in one go that's gonna be much simpler.
Daniel: Yes.
Mike: You've mentioned costs and how they have come down significantly over the past few years and there are of course costs associated with voice banking and the tech involved, but organizations like Team Gleason and various chapters of the ALS Association have been partnering to cover those costs for people living with ALS. Can you talk a little about how that process works? Are folks, once they learn about it, kind of just working with you to figure out the easiest way to do it? Is it, are they applying for grants or is it more of a referral situation in terms of how you're connecting with families?
Daniel: So, with Team Gleason it seems to be mostly referral; either we're referring them to our services based on conversations we've had with them or a speech therapist or ALS Association or a clinic; presenting them with these options and letting them know that Team Gleason will provide funding. Our website has a page that talks about message banking and voice banking and on that page you can sign up for Acapela or ModelTalker and kind of connect that account with Team Gleason so that when the voice is completed we will get the invoice for the cost and pay it as opposed to going directly to the individual.
Mike: Nice.
Daniel: So, and then we will do that whether it's being recorded at home, if it's being recorded in a clinic, if it's being wherever the situation we're happy to help as many people as possible with that.
Mike: That's really great. This has been an enlightening conversation, I knew that it would be. Daniel, thank you for the time today and also for everything that you do at Team Gleason.
Daniel: You're welcome. We're we're happy to help as much as possible.
Mike: And for anyone interested in learning more about the foundation's work, I encourage you to visit TeamGleason.org. We will of course include a link in our show notes.
Mike (narration): Dr. Ezgi Tiryaki has long been recognized for her knowledge of ALS care and research and has been in the field through some significant changes to the way in which ALS care is delivered. So, we thought it'd be a great idea to mine her expertise about the current clinical model as well as where she sees ALS care heading in the future.
Mike (in studio): I'm joined today by neurologist Dr. Ezgi Tiryaki.Dr. Tiryaki is an associate professor of neurology at the University of Minnesota, she's also the medical director of the ALS Center of Excellence at the VA Health Care System in Minneapolis. She's an expert on a number of ALS related topics so we are thrilled to have her in the studio today. Thanks for being here doctor it's always great to see you.
Dr. Tiryaki: Thank you for having me.
Mike: We wanted to have you in to discuss both the current and future models of clinical care for ALS. And, by and large, at least in the US, it seems like over the last decade or so most clinics have adopted the multidisciplinary model of care where individuals and their families can meet with multiple specialists in the same visit in addition to their doctor whereas in the past they would have to schedule eight different appointments at different locations on different days and for someone dealing with the challenges of ALS that makes receiving care exponentially more difficult. In addition to those savings of time and energy, doctor what do you think are the other benefits of this current model of care?
Dr. Tiryaki: There are many benefits to being seen in a place where everybody is in tune with this disease. It is a rare disease. A lot of providers outside of these centers may not have encountered ALS patients or the specific needs that a person with ALS and their family has. And so, having people who are absolutely tuned in, experts in the area, have seen this a lot, have done this a lot, is a tremendous benefit.
I remember vividly when I went to an ALS clinic for the very first time, I was a trainee in Indiana. This was part of my residency training in Neurology. This is almost 20 years ago, I hate to admit that, almost 20 years ago, but it was really palpable how the dynamic changes when there is a healthcare team that comes together around a patient and their family. I really had a sense for this is how healthcare should be delivered and it is a model that could be applicable to many other diseases, but luckily in ALS we have certified centers of excellence and we have funding and support to put teams like that together to serve our patients better.
Mike: Sure.
Dr. Tiryaki: There is research about how these clinics work. Some research, for instance from Ireland, says that being taken care of by a multidisciplinary team allows people to live about 7 months longer compared to people who are not taken care for in a team. There's research that says that people who go to centers of excellence like this, where a multidisciplinary care team is present, have better utilization of the resources that are available, have better adherence to practice guidelines, for instance, they might have access to non-invasive breathing support when they need it. They might have better access to feeding tubes when they need it. So, there is research that indicates that people actually live longer as well as better when going to a multidisciplinary care setting.
Mike: Wow. And, for our listeners, I know that every clinics a little bit different, but typically what group of clinicians are made up in that multidisciplinary team? Who are you seeing if you go to one of those clinics?
Dr. Tiryaki: So, usually the clinics are arranged in away that the patient and their families stay put and a variety of team members come through. We usually joke that we always outnumber our patients. So, part of the team usually is a nurse who coordinates the care. Then there are providers such as Physical Therapy, Occupational Therapy, so people who focus on using the strength you have to the fullest and providing you with the assistive tools that you might need for mobility and for your activities of daily living. A Speech Therapist is part of the team. They help assess speech as well as swallowing and also help connect the patient to technology to enhance their ability to communicate through all phases of the disease.
Mike: Sure.
Dr. Tiryaki: Social Work, a very important part. There is a lot of paperwork to navigate, a lot of decisions to be made in terms of the goals of care, but also financial goals and navigating insurance companies, other community resources; so social workers are essential to the team as well. Dieticians. We know that maintaining weight is a very very strong predictor how people do and so we pay a lot of attention to what people eat and how they're managing their weight. So, the nutritionist or dietitian is a very important part. Who am I forgetting? The neurologist, I guess, is also part of the team.
Mike: I was gonna say, the doctor stuffs in there at some point.
Dr. Tiryaki: There's some doctor stuff. So, the neurologist usually is the person who makes the diagnosis. The neurologist is the person who manages a lot of the symptoms of ALS; even though ALS is not a curable disease, it is a very treatable disease and a lot of the symptoms can be treated with interventions. It might include prescribing medications, but it might also just include teaching; it might include non-pharmacological interventions. So, treating symptoms is a very big part of what the neurologist does. The third thing that neurologists usually do in clinics like this is that they help navigate the disease process.There are certain milestones that are predictable; we know that, for instance,people will have increasing difficulty swallowing.
Mike: Right.
Dr. Tiryaki: And they will have increasing difficulty maintaining their intake of nutrition. So, navigating decisions around feeding tubes are usually also done with a neurologist.Similarly we know that people will gradually have difficulty with breathing; so, again, making decisions about how that issue is best navigated for that particular person, for their particular situation, is something that the neurologist helps with. You might say we help figure out what is most important to the person and try to tailor what we do to achieve those goals. And then, lastly, research. The neurologist is usually the person who helps keep the clinic connected to research. We talk about the latest developments, if there are research studies that would be of interest we share information about them,and keep our eye out for what is happening.
Mike: Doctor you just went through this list of all the clinicians that someone may see in a multidisciplinary setting and there's a lot of things that go into that, what do you think might be missing from that group?
Dr. Tiryaki: So, there's two things that strike me as missing from the group and, again, I had the fortune of working with those specialties directly in the clinic that I used to work at, at Hennepin County Medical Center. I think having somebody with a background in Rehab Medicine, Physical Medicine and Rehabilitation or PM&R; is a real asset. So, it's a physician specifically trained in the rehab aspects of a disease and they have a very unique way of working together with the physical therapists and the occupational therapists in making things possible like adaptive hunting or you know how to travel successfully or be able to do the things that somebody wants to do. They just have a very unique perspective on that including how to maintain intimacy in ALS which is an area I think that's often neglected in clinics. The other type of specialist I think brings absolute value to the table is a Palliative Care Specialist. There are some neurologists like Dr. Sam Maiser who is trained specifically in palliative care, but I think most clinics don't have that benefit of having a palliative care expert as part of the clinic day. And, again, being an expert in symptom management as well as in how to navigate difficult decisions, especially when there is varying opinions in a family, can be very helpful.
Mike: So, on one of these visits if a family or an individual family sees five, six, seven specialists and then talks to their neurologist is that team then, are they kind of huddling up and discussing how the visit went and their findings and figuring out probably the best path to take from there does that happen that same day?
Dr. Tiryaki: I think that's what the magic sauce of these clinics really is, is that there is this level of communication they cannot happen if you have a fragmented care delivery system. Just by virtue of being at the same place at the same time and seeing the same person, we have a built-in clinic huddle, some clinics do it at the beginning of their day, a lot of clinics do it at the end of the day, everybody talks about what they have done or what they have recommended or the issues that they have noticed and because we share it as a group and each of us brings our own expertise to the table we really can make sure that we stay on top of ALS and so that ALS doesn't run the game, but we are helping to navigate this as best as we can.
Mike: So that's where the multidisciplinary model is working, those are some of the benefits, thank you for outlining those. But, nothing's perfect. In your opinion, if we're looking to the future, how can the system be improved? What are some of the remaining challenges do you believe with this model?
Dr. Tiryaki: So, one challenge we have in our health care system is that it's not an easily sustained model in terms of its cost.
Mike: Okay.
Dr. Tiryaki: So, it's always a little bit, I would say, at risk. We have sources, we get funding, a lot of clinics get funding through the ALS Association or through MDA. Some places have private foundations or additional dollars that help support those types of clinics, but they're not sustainable in our current billing system and insurance system. And so, that is something that keeps us up at night. This is something that I think most clinics are aware of and worry about. The other piece is that even though we are much more patient-centric than having patients go to eight different providers,I don't think we have really achieved the level of patient-centeredness and family-centeredness that could be possible.
Mike: More personalized medicine you're talking about.
Dr. Tiryaki: More personalized to the individual. So, one thing that strikes me for instance about the certified centers of excellence is that they are defined by what goes in. We have very clear criteria of who needs to be part of the clinic, that a clinic huddle has to happen, that research access has to be there. So, there's a list of criteria that these clinics adhere to.We don't have a corresponding list to hear the outcomes we want to see. We want every person to be connected to palliative care, we want every person to have a certain level of quality of life, we want sort of measures that define what it looks like, what you get, after you put all these things in. We'redefined by what goes in not so much by what comes out.
Mike: I've heard you speak about that before, standardizing outcomes, and you think if you're able to to kind of turn things on its head and measure those outcomes instead you're going to get better care, is that what I'm hearing?
Dr. Tiryaki: Yeah, so, I happen to be an educator and there's a big shift in how we see, for instance, medical education. We had this fixed time, variable outcome model for a long time. For instance, medical school is four years, everybody goes to medical school for that same period of time, but you might have variable outcome in how much people have learned in those four years. And so, medical education has now switched to saying we want to define the outcome, we want everybody to be a capable doctor coming out of medical school. Somebody might achieve that goal in three years or three and a half years. There's nothing magic about the four year time frame to achieve a certain outcome. I feel the same about the ALS clinic model.
There's nothing magical about saying all these specialties have to be present in a clinic if we don't think about what the outcome is that we want. And so, maybe it is okay to a variable input, not every patient has to see everybody on the team or not everybody needs everybody on the team. For instance, if you think of somebody where ALS starts in the muscles for speaking and swallowing, they might not really need the physical therapist for quite a while. The reverse is true if you have difficulty with a foot drop and you have difficulty getting around, but your voice is perfectly fine for a very long period of time, you might not necessarily have to have the speech therapist be a part of your clinic visit. So, really individualizing and customizing what goes in, but having a certain standard for what you want the outcome to be in terms of the satisfaction of the patient or the health outcomes that you're wanting to achieve I think is a better model. That would require us to think a little bit differently of how we do things.
Mike: I've heard so many individuals living with ALS talk about how helpless they felt after their diagnosis and how helpless their families have felt and having really any sort of control and anything that you can give back in terms of control really means so much to those individuals.
Dr. Tiryaki: Yeah, there's this paradox that when people come to our clinic they are not really looking forward to it, I would say, because it reminds you that you are living with this,and the measurements we do and the assessments we do remind you that things have progressed. We put a number on it. You know, your score went down, your breathing number went down, so I don't think it's an easy thing to come to the clinic and it is definitely exhausting mentally as well as physically. But, the best compliment we also get is that people still think it was a good thing to do when they leave and they feel that they walk away feeling more empowered, having better resources, having the right tools to make the next days and weeks just go smoother.
Mike: That is a very meaningful outcome, absolutely. We had Dr. David Walk on our last episode discussing research and he mentioned the importance of collaboration and sharing findings in that world to help drive progress. How much collaboration is there on the clinical care side? Do doctors and their teams connect with staff at other clinics, in various regions, either state to state or around the world? Do they talk about what's working with them? Is that, does that happen?
Dr. Tiryaki: Again, I think we're very lucky here in Minnesota because we get together on a quarterly basis with all the centers in the region. I don't know of any other areas in the country that have this level of networking and connection between their clinical programs. So we get together and share our best practices, we usually learn together, have an invited speaker and learn about a topic that is relevant for our patients, so we're all on the same page. We inform each other about the research that is going on at each center. So definitely a good thing to do. There's not as much collaboration, I would say, in terms of the actual delivery of care. We are very lucky here in Minnesota. We have certified centers at the Mayo Clinic, at the University of Minnesota, at Hennepin County Medical Center, at the VA, and we have about 500 people in the state living with ALS today.
There are states in the country that have no centers like this so we have a real density of expertise and passion and caring in our area here. I sometimes wonder how we could leverage that to reach areas where patients don't have access to centers like this. Even though it's a patient-centric model, we still rely on the patient coming to us and I have patients who come from the Dakotas, who come from Wisconsin, who have maybe six to eight hour round trips sometimes to come to our clinic and I think we might have opportunities here to get the care to them, where they are.
Mike: That's a perfect segue because I want to ask you about telemedicine, a very kind of hot topic right now, and one that I think many see as the future of medicine for a number of fields. How do you see telehealth visits fitting into ALS care?
Dr. Tiryaki: I think telemedicine is an excellent tool that we could use in the realm of care delivery for ALS patients. There are so many uses of telemedicine, for instance, it can be used to connect a local doctor's office to a center with expertise. So, let's say you're in a rural area perhaps and you're seeing your primary care doctor or local neurologist, that person from their office could link into a center and there could be a consultation or conversation. Telemedicine can happen in people's homes. People can stay in their home and connect to their care team and see the speech therapist or the dietitian and the neurologist by videoconferencing from their home.
Telemedicine can be used to monitor people; there's a lot of diseases, for instance, where telemedicine is used very successfully to monitor a patient proactively in their home setting. A perfect example would be, for instance, congestive heart failure. One thing to watch would be a person's weight, also their vital signs, and so there are telemedicine programs where people have a scale in their home, that scale is connected through Wi-Fi to the phone or a computer that sends the weight on a daily basis to a center, and a nurse at that center looks at the numbers for a lot of different patients, but if she notices or he notices a change in the weight there might be a call back to the patient to say, "Oh what's happening? How are you feeling? Your weight is up." Could this be a sign that your heart is failing? Something like that could be possible with ALS as well. If we could monitor if people are having increasing difficulties with breathing throughout their disease not just when they come to our clinic every three months.
Mike: Yeah because I imagine sometimes every three months is not enough if you have an issue that's arising with your disease and you don't have a clinical visit for another six weeks and trying to schedule something like that and even getting to the clinic,wherever it may be, very very challenging so having access to something like a telehealth is it might be the solution.
Dr. Tiryaki: Yeah it would have incredible opportunities in terms of catching things early, in terms of using less energy and less time to come to the clinic, sometimes even not having to do that extra step of calling if we had ways to connect where we would watch, where we would be in touch, it would take that extra step out of even having to call to make an appointment. We could reach out and say, "Hey, we noticed this is happening. Tell us more. What can we do now?" So, that could be the future of care for ALS and I would love to see us come together in those meetings to really think about how we could change the care model so that we scale it up and scale it down at the same time. Scale it down meaning that we get down to the level of the individual to say what does this person really really need from us, but also scaling it up that we can get it to a population of people who live with that very same disease all across a variety of geographies and areas in the country. So, scaling it down by scaling it up at the same time, I think that is the future of ALS care that we have to think about.
Mike: Another very smooth transition because the next thing that I want to ask you about is that individualized care and I've heard you say before when speaking about ALS care and research that perhaps someday down the road we'll be able to individualize care to the level of specific genes. So, in other words, if you have this particular gene in your DNA, and we know that impacts your disease progression in a certain way, we therefore may be able to tailor your treatment plan accordingly. You think that that's a place we'll reach at somepoint down the line?
Dr. Tiryaki: I absolutely think so. We have over the last I would say five years have seen tremendous progress in terms of understanding the genetic basis of this disease and one of our struggles with ALS has been that we never knew what really causes the disease and if you don't know what causes the problem it's very hard to target that and do something about it.So, knowing genes and knowing what these genes do and having methods now that are able to block those genes, block what they do, is really becoming a reality. We are having studies that are going on right now targeting some of the more common genes in ALS and I absolutely hope that those things can be scaled up to be available to become FDA approved and really show some impact on halting the disease progress.
Mike: It's clear we have along road ahead of us, but I think our listeners will really appreciate hearing your perspective doctor and knowing that you're on their side as we look to the future of ALS care and trying to make better care available to more people.
Dr. Tiryaki: Thank you.
Mike: I knew this would be informative, but I feel like we got even more than we bargained for so thank you very much for taking the time out of your busy schedule Dr. Tiryaki to be with us on the podcast.
Dr. Tiryaki: Yeah, thank you.
Mike (narration): For our final segment, we spoke with Donnie Raveling who is living with ALS here in St. Paul, Minnesota about the need for home care for many people in his situation as well as some of the challenges presented by our current health care system. Here's what Donnie had to say.
Mike: (in studio): We are joined in the studio today by Donnie Raveling of St. Paul, Minnesota who is living with ALS and generously offered his time to speak with us today.Welcome to the show Donnie.
Donnie: Thank you very much. It's good to be here.
Mike: It's great to have you. You're looking excellent in orange. We're gonna take some photos.
Donnie: I want the guy to be known as orange.Mike: That's right. I should tell our audience - orange is very much your color. You've always got a few pops on.Today you've got a really bright, cool shirt on. It's good to see you. Before we get into home care, which is what I wanted to pick your brain about today; could you provide our listeners with a little bit of background about yourself and your ALS diagnosis?
Donnie: Well, I was diagnosed in September of 2017, so not quite two years. I currently am having a little bit of breathing issues, that's how they found the ALS. So, I'm using a BiPAP during the,the BiPAP machine which is called a trilogy, during the day. I'm like to do things, I like to be outside. I'm kind of reworking some of the things I used to do because I can no longer do them. But, I used to walk so instead of walking I stroll now. That's what I call stroll.
Mike: There you go.
Donnie: In the wheelchair. I like to talk to people, so I spend a lot more, I get a lot of my energy from that so, but kind of depending on where I'm at and who I'm with I kind of gauge that, but I should slow down because the more I speak the more I...
Mike: Use your energy.
Donnie: Lose my energy.
Mike: Sure, sure. Has the BiPAP helped with that a little bit?Do you find yourself more energetic as the day goes on
Donnie: Oh, yeah.
Mike: than you were previously?
Donnie: Yep, yep.
Mike: That's good. You're living in St. Paul now and as you mentioned your disease has progressed to the point where you're using a power chair to get around. It sounds like you're gonna be moving soon, what is your,what's your current care situation?Donnie: Well, I'm needing some help in the shower; especially washing, currently washing from the knees down. I don't reach that far down real well. I could use some help washing my hair so, this, that's so that's my goal is to find a place that I can have that. Where it's kind of a, it's not around the clock, but it's a it's a service.
Mike: Help with those personal care needs, yep.
Donnie: And then I also need help daily with shaving, I don't have a long beard, but I like to keep it short.
Mike: Yeah, you look good with that scruff. That's a good length for you. I can't pull that off, mine's too patchy, so, I can't do that. But, having those kind of personal care needs taken care of is what you're after and you're gonna have, for your new residence you're going to have that.
Donnie: Right.
Mike: I think Medicare and Medicaid are probably the two coverages that come to mind immediately and for anyone under 65 that are facing something as serious is ALS, there may be some coverage for home health care available to you, but as anyone who started down this path will tell you and, as I'm sure you've discovered, it's lined with red tape. There are many requirements and restrictions.
They're not going to cover things like round-the-clock care or personal care services that you talked about earlier,things like bathing and dressing or using the toilet. Meal delivery services,what you just mentioned, in most cases those things aren't covered and what is covered is usually only offered either short-term or intermittently. And even if you're someone who happens to meet the majority of their requirements for dual eligibility in Medicare and Medicaid, they're still likely gonna be significant out-of-pocket premiums, deductibles, co-payments. It's one of the reasons you hear about ALS being such a financial burden in addition to the physical and emotional challenges it presents.
Donnie: Yep, correct. Yep. Yeah I find that, so not only food, but grooming, which includes showering, you also need some help with just even getting around and that can be costly. So, we happen to have here in the cities, transportation, which a person can use,but if you're not comfortable with it
Mike: Yeah.
Donnie: it's daunting so you would need someone to go with you, you know, maybe for the first few times or...Now there's all kinds of daily living skills that a person may need help with
Mike: Mm-hmm. We haven't mentioned private insurance and that's an option for some folks that are eligible through an employer's plan, but again the costs are typically going to compound regardless of the coverage you have so, Donnie, in your opinion what is it that needs to happen? Do we have to work harder on the legislative front to increase federal aid? Is it conversations with the insurance providers to, I guess, negotiate more reasonable rates for people living with ALS? How do we move forward?
Donnie: Legislatively we could do, for particular diseases especially, we could do a lot more with not having somany loopholes.
Mike: Mm-hmm.
Donnie: If, I don't know what else to call it except a loophole.
Mike: Yeah.
Donnie: With, especially like with Medicare, there are some loopholes that forcertain diseases that, because they want to they want to do it across the boardfor everything.
Mike: Right
Donnie: And it's not the same for everything.
Mike: No, no.
Donnie: So, that's what I see legislatively, that we need to have less loopholes for certain disorders.
Mike: I think everyone would agree with you on that front Donnie. You mentioned it's different with ALS and ALS is unlike other diseases and, even within the ALS community, everyone's disease progression is different. So, you can't just say having ALS is like having MS or Alzheimers or Parkinsons; they're all different diseases and there needs to be special elections, coverages for specifically those diseases. You can't just group them all together and say everyone needs the same coverage and that's the fight that we've been having legislatively for years and I think we are making progress, but clearly there's so much more that needs to be done and loopholes is the right word and it's probably the polite word to say loopholes. I've heard others kind of use some more colorful language when describing the insurance process and how frustrating it can be, so.
I think part of when you talk to people about home health care and some of the home health care professionals they've worked with, it's really critical that whoever is coming into the home to assist has an understanding of what ALS is and the needs of the person that they're going to be serving because we've said it many times there are differences about living with the disease and people's progressions are unique and if you come in without that sort of education and knowledge it's going to impact the care you're able to provide, so. That's a, it's kind of a sub-topic of the home health care access piece because just having someone come in is one thing, but having someone who's going to help and understand what you're going through and understand what your needs are, that's critical.
Donnie: It's very critical, yep. To be able to kind of drop the preconceived notions of what a person needs
Mike: Mm-hmm.
Donnie: is the big thing.
Mike: Mm-hmm.
Donnie: Especially with ALS because one moment I can feel just, I can feel pretty good with something.
Mike: Mm-hmm.
Donnie: The next moment, nope, I don't feel good at all.
Mike: Yeah.
Donnie: That's because there's some exhaustion that goes on and they can lose some strength, they can lose some feeling in their limbs.
Mike: Yep.
Donnie: They may lose some of their voice. Just help them.
Mike: And all of those things are gonna impact the care that they need.
Donnie: And then to allow them to do it, if they still can, is another issue too. Don't, I would say don't just just don't automatically do something for someone.
Mike: Right.
Donnie: Ask them if they want help with that because it's, it's so important to have that self esteem and sometimes the self esteem is only kept if a person can do it for themselves and encouraging them if they say "yep, I need help with that". Just encourage them because we don't, they don't, maybe they can do it and they want to give up because that happens too.
Mike: Yeah, losing independence must be such a big part, a big challenge, with this disease and not being able to do the things that you have your whole life and seeing those kind of slip away it must be really, really hard.
Donnie: It is, yep.
Mike: Well, Donnie, I want to thank you for spending some time with us today and for providing your thoughts on a really, really important subject. I'm sure our listeners will appreciate hearing from you on this and thanks so much for coming in.
Donnie: Thank you for having me. I appreciate it.
Mike: Hope we see you again soon.
Donnie: Yep, good, I hope to be here.
Mike (narration): After speaking with Donnie we asked Jennifer Myhre of the ALS Association to provide some additional context to our home health care discussion. Jennifer works with families on a daily basis to navigate the complexities of insurance and Medicare and she makes some strong points in our final segment.
Mike (in studio): I'm looking forward to speaking with our next guest for a number of reasons. Her name is Jennifer Myhre and she is a Care Services Coordinator for the ALS Association.She has helped connect individuals and families facing ALS to resources and support for more than a decade and she's the perfect person to introduce to our conversation about home care. But, I'm also excited to have her on the microphone because she has this amazingly soothing voice. Welcome Jennifer, thanks for being here today.
Jennifer: Thanks Mike.
Mike: It's true, I feel like people would listen to you read an encyclopedia. You do all of our voiceovers for our PSAs and our ads and happy to have you on.
Jennifer: Well that's very nice, thank you.
Mike: But, the real reason we wanted to have you on Connecting ALS was to talk about home care and we had Donnie Raveling join us recently to give his perspective, as someone living with the disease, but I'd like your input since you hear from people every day about this issue and let's start there. Where does access to home health care rank in terms of a priority for people, and not just those living with ALS, it's a big question for a huge swath of the population right now, correct?
Jennifer: That's right. It ranks way up to the top. Access to home care for people with ALS and for anybody who is aging, is differently abled, is something that is of key importance.
Mike: And among the roadblocks that people will run into when seeking home health care, biggest one has to be cost right? Because Medicare and Medicaid, which a lot of people are depending on in this instance, that coverage for this situation has a ton of gaps in it.
Jennifer: That's right. There's a small portion of the population who may qualify for Medicaid. A person has to have an income that's low enough and assets that are few enough in order to be able to tap into that program. Once they do they can qualify for quite a bit in the way of care at home, but again, as I said,that's a small portion of the population. And while many people with ALS do eventually qualify for Medicare, as you noted, Medicare has pretty limited coverage when it comes to daily care in the home.
Mike: Mm-hmm. What are some of those limitations?
Jennifer: So, in order to qualify for care in the home, under Medicare, a person has to first be home bound. Meaning that, with the exception of medical appointments and I believe now it's attending church, somebody is unable to leave their home. So that's first and foremost and then they have to have some sort of skilled need according to Medicare and skilled need could be something like education following a hospitalization. So, for example, people with ALS oftentimes opt for a feeding tube, which is a medical procedure that you know may require depending on the situation a stay in the hospital, but certainly some monitoring at home some of the time. A nurse to come out and make sure that it's healing well. Sometimes skilled care involves a Physical Therapist. So, a PT to come out and evaluate the situation at home, provide some teaching on a certain piece of equipment. So, something that Medicare considers a skilled need that would require a nurse and/or a physical therapist is generally what it would be. And, as you talked about earlier,even then this is temporary. This is not an ongoing type of care in the home.
Mike: And there are limitations to those types of care themselves, correct? I mean,things like personal care services aren't covered, why is that? Is that just a cost issue because it's so specialized? What does that relate to?
Jennifer: My understanding is that Medicare would be looking at what is absolutely necessary to the situation that they're providing coverage for. Now sometimes if somebody has a skilled nursing need, let's say it's a wound that needs monitoring and managing, then Medicare might also cover a home health aide to come out once or twice a week to assist this person in the bath, for example. That can often happen during an episode, so during that limited amount of time they would cover what they think is medically necessary given the skilled need.
Mike: Sure.
Jennifer: And that's not always going to be a home health aid.
Mike: Right and in most cases, what they deem medically necessary isn't going to cover just routine bathing or hygiene things, using the toilet, getting dressed, those things typically aren't covered.
Jennifer: That's right. You know, those are what Medicare would call "custodial care". And custodial care is that, you know, day in and day out types of care that somebody might need. You know, activities...We consider ADL's or activities of daily living, those things that we all have to do every day when we get out of bed in the morning; so we get up, we use the restroom, we take a shower,we brush our hair, brush our teeth. Medicare considers those kinds of things custodial things that we all do every day versus some sort of skilled need in the home.
Mike: Right.
Jennifer: It would make sense that if somebody needed help with those things that there would be a way to pay for them.
Mike: Yeah, absolutely. So, let's say that I'm someone that's living with ALS or I have a loved one that's living with ALS. I call the ALS Association to talk to you about what my options are. Where do we even begin? I mean, do you have to just go down this list and ask a bunch of questions before you even know where to start?
Jennifer: Sometimes. You know, I often, this is a common question that I do get.It's a common phone call and it's it's one of the harder phone calls take and to have to talk to people about. I really start with the landscape of health care. Or, I should say, I start with a landscape of home care. And we do run through a list.We talk about what Medicare is and how it's different than Medicaid because people often confuse those two things. We talk about how to qualify for those things and what the limitations of those things can be.I always ask people if they're a veteran or not and if they're a veteran then it's a different situation. Fortunately for our veterans they have access to more benefits, more things like care in the home, and so then it becomes a slightly easier conversation. Often the conversation will turn to ways that people can bring together the informal supports that they have in their lives to see if that's a way to help manage some of the needs that they have in the home. And people don't often expect the conversation to turn to that, but it is important to talk about those things because they generally are the things that do fill in the gaps of care.
Mike: Right, right. If someone checks all these boxes and meets all these qualifications to receive essentially the maximum amount of home care they can and they're not a veteran, let's say they don't have access to those veteran's services, but they check all the other boxes; but they're someone who is in need of 24-hour care, let's say they are in later stage of the disease and perhaps they're using some kind of ventilator, something like that,and they need longer term care. They meet all those qualifications, they're still going to end up paying quite a bit out-of-pocket even if they're hitting all those marks, right?
Jennifer: Oh, that's absolutely true. And one of the things that, you know, regardless of where somebody is in their disease progression, we do talk about the option of privately paying for care and for most people, who are earlier on in the progression, it is assistance with those activities of daily living and that it requires typically a home health aide, a PCA or personal care attendant, or depending on the state that they live in it could be a CNA and the average cost of something like that is going to be $35 an hour, give or take. And for people who just are looking for a couple of hours of help a day that adds up.
Mike: Yeah.
Jennifer: And is cost prohibitive for many. And so then if you're talking about, you know, the disease progressing to the point of needing 24-hour care, it really becomes an impossibility for most people to pay out-of-pocket because you're looking at something between thirty and forty thousand dollars a month.
Mike: Wow.
Jennifer: So more than some people make in a year.
Mike: Yeah.
Jennifer: So, what tends to happen in those situations quite frankly is people pay for as long as they can out-of-pocket and then eventually may qualify for Medicaid because they've spent down the resources that they do have and now do you have a low enough amount of money where they can qualify for Medicaid.
Mike: That's really unfortunate.
Jennifer: Yeah, it's sort of an, it feels like an all-or-nothing kind of situation. It is unfortunate. I do think that we as a society need to figure out howto get better at supporting one another and receiving support more informally because there is that type of potential help around us, some more than others. It just depends on a person's situation, but the more that we can tap into that alongside with any progress that is being made around home health care I think is going to be crucial.
Mike: Right.
Jennifer: The ALS Association does have a program that we talk about, it's a model called Care Connection and it does instruct families essentially on how to tap into potential networks that may exist around us that we may not even think about. So, for example, if I belong to a faith community are there people in that community who may be able to assist me at home. Neighbors, former co-workers, these kinds of things.And then, you know, how do we ask for that help because from doing this as long as I have one of the things that I do see consistently across the board is that the people around us do want to help.
Mike: They have to be asked.
Jennifer: They have to be asked and they just don't, yeah, they don't know how necessarily. So, how do we,how do we direct that good intention to making that work for people in the home?
Mike: Mm-hmm, mm-hmm, that makes sense. On the agency side of things, the organizations that are providing home care for individuals and their families; you deal with those folks quite a bit. Are there challenges there in terms of how those organizations are structured or how they staff their employees or how they manage other organizations that create issues down the line for people who need this care?
Jennifer: Yeah, so we've seen somebody, for example, qualify for Medicaid and be granted a certain amount of hours per day of home care; sometimes it's difficult to find an agency who can actually staff that many hours.
So, you know, we've seen some families divide the time between two agencies in order to make that happen. The truth of the matter is in home care at this point in time, and it's been this way for a while, it's not always easy to find staff to work for a home care agency. I think one of the other issues that is important to look at is how much are these folks getting paid and how can we draw more people into the the business of home care so that they want to stick around and they want to be able to work with these families. So, unfortunately there can be a fair amount of turnover in the home care world So, that's one issue.
And then, you know, another issue that's a reality is for people who live in areas that are more rural, whether that's rural Minnesota, North Dakota,South Dakota we may have a difficult time finding a home care agency that just even covers that area. So, yes, there are a number of additional circumstances that can become limitations.
Mike: The more we're talking about it, the more complex it sounds and I can't imagine if you're living with this disease and dealing with the emotional and physical challenges that presents, having to add this on top of that and think about navigating the healthcare system and insurance and it's it's a burden that no one needs.
Jennifer: I couldn't agree more. I think it's incredibly unfortunate. It would be great to see some changes over time.
Mike: Jennifer, what's it gonna take in your mind to get us there? To make access easier, to make this kind of care more affordable, is that all happening at the federal level? Are there things we can do to get through to legislators? Should we be working directly with insurance providers on solutions? What can we do?
Jennifer: I do think it's probably all of the above. I wish I felt more certain about how to go about it. I do think that absolutely getting in front of our legislators is gonna make a difference. Helping them to see how much of a struggle it is for families dealing with ALS. I think there is potential for working with insurance companies as well because you know they can make their own decisions. but they do tend to follow the model of Medicare. We have seen some folks advocate very heavily for themselves with their insurers and have some luck with getting their insurer to provide more coverage than frankly I ever thought we'd see that insurer provide. And, while I do feel it's more of an exception to the rule, I think it's important I think these family members would want me to share with the ALS community that it has happened. It's taken some folks a lot of time and effort to do it, but there has been that occasional success story of "hey, I got my insurance company to pay for X amount of care for me per day".
Mike: Yep, that's encouraging and we want folks to be able to be their own advocates and for family members to be advocates for their loved ones. Truth is we all need to be louder about it, we all need to be advocates on this front, but that's it's encouraging to hear that. Jennifer Myhre thanks so much for your time and expertise today. This is a huge topic, that I'm sure we will touch on again down the road.
Jennifer: Thank you, I'm happy to be here and thank you.
Mike (narration): That's going to wrap up episode 2 of Connecting ALS and I want to thank all of you for tuning in.
Be sure to subscribe at ConnectingALS.org. You can follow us on Facebook and Twitter and you can email us at [email protected]. We'd love to hear your feedback and answer your questions so feel free to shoot us a message.
Thanks as well to all of our guests for their time. We'll be back next month with new content.
Connecting ALS is produced by Garrett Tiedemann from the headquarters of the ALS Association's Minnesota, North Dakota, South Dakota Chapter in Saint Paul, Minnesota.
