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A Mom Who Fought With Law & Won

Hosted by Erica Jolene with special guest Shana Metsch | Transcription HERE


Atypical Truth podcast episode cover. Olive green background with logo at center. Logo is an anatomical drawing of the human brain with colorful flowers blooming from the ventricles. Image reads in white font: “Afterthoughts, Shana Metsch, A Mom Who Fought The Law & Won”
Atypical Truth podcast episode cover. Olive green background with logo at center. Logo is an anatomical drawing of the human brain with colorful flowers blooming from the ventricles. Image reads in white font: “Afterthoughts, Shana Metsch, A Mom Who Fought The Law & Won”

In this week’s Afterthoughts episode, I am joined by my friend and fellow medical mom, Shana Metsch. We first connected a little over a year ago when she offered her personal insight into the process of obtaining a ceiling track lift for our home.

In Shana’s 15 years of providing in-home care to her daughter Hannah, she has fought and prevailed in a number of insurance battles, including the ceiling lift.

Shana graciously offers us some extremely helpful information to ensure that families like our own are empowered to fight and prevail in similar battles with insurance/Medicaid.

Please consider voting to help petition for Disability to be a category of its own. By clicking HERE, you will be helping to support shows like this to be more accessible and reachable to those within the disabled community who are searching them out.

Research conducted in relation to this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.

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Episode Transcription

Erica 00:00

Welcome back to Atypical Truth. This is a podcast community for those impacted by disabilities and complex medical conditions. I'm your host, Erica Jolene.

Erica 00:05

In this week's Afterthoughts episode, I'm joined by my friend and fellow medical mom Shana. It's been an absolute pleasure to get to know Shana. We first connected over a year ago when she offered her help and insight into the process of obtaining a ceiling track lift for our home. As we've touched on in previous episodes, there are some physical obstacles that we have to overcome in being able to provide care for our growing children within our home. One of those is the toll that our bodies take when lifting, moving, and positioning our children. And I have to say, this is not a concept we gave much thought to in the early years of caregiving. But over time, we and our nurses have experienced an increase in our back and body pain from the lifting, especially as Margot, you know, quickly surpassed the 60 pound mark. And while it makes perfect sense to you, to me, to anyone looking at the big picture, for a home like our own with two complex needs patients to be provided the most efficient and functional equipment available to ease the physical burden of the caregiving. Historically, insurance companies, they don't really consider any of that. They'll either flat out deny the request, or maybe only provide the bare minimum, which is often inefficient, outdated, and impractical. It'd be like you saying, I really need to get with the digital times and then someone hands you a giant rotary phone. That's the best example of the type of equipment that our insurance wants to provide unless we're willing to do the work and fight.

Erica 01:13

And Shana has 15 years of providing in-home care to her daughter Hannah. She has fought and prevailed in a number of insurance battles, including the highly coveted ceiling lift. She graciously offered to talk with me about her experience and to share with us some extremely helpful information to ensure that families like our own are empowered to fight and prevail in similar battles. And I'm telling you right now, this episode is packed full with all the information you need to give you the confidence to roll up your sleeves and head into battle. The best part of all, we have your back. In last week's episode, I hinted at some exciting news and this is just one component of that. I have officially launched the resources page on the Atypical Truth website. And I'm really excited because I've never before done graphic or website design, so this was kind of a big deal. But this new tab, it includes a variety of templates with the documents we discussed in this episode. Each one is designed for you to tailor it yourself for your patient or your child. These templates are completely free for you to download. And I know that I personally benefited from creating and utilizing an insurance timeline for our kids, which was inspired by the timelines that Shana had created and sent to me.

Erica 03:24

So please feel free to visit the website and check those out. We have everything from nursing orientation forums, nursing notes, insurance timelines, daily routine lists, and my personal favorites, a patient information sheet. This is a concise document that I created in response to feeling very overwhelmed when my children were in critical condition and in need of urgent care. Having this document in their diaper bag at all times meant that if ever an emergency arise, all I had to do was hand this document to the triage team, which then allowed me as their mom to just focus all my love and attention on them in that moment of crisis, rather than trying to explain every little detail to a stranger. It is a well organized template that is designed to detail every single thing about the child from their diagnosis, baseline vitals to their precise med dosages. But again, these are free and available for you to customize to your liking. And hey, if you have a better way of organizing this information, please send it my way! I'm a huge nerd for well organized beautiful spreadsheets. Yeah I'm admitting that I hope this conversation with Shauna is as much of a game changer for you as it was for me. And I have to warn you, you should be prepared to take notes. There's a lot of information packed into here.

Erica 05:19

I show Shana thank you for joining me today. I appreciate this.

Shana 05:23

Thank you so much for having me.

Erica 05:25

Yeah, we had the opportunity to talk several months ago when I posted something in our social media Facebook group about needing help with finding some resources for ceiling lift. And you were like, "Girl, I got you send me a private message. I know how to win this race!" Oh, my goodness, the information that you shared with me was just invaluable. It has proven to be more helpful than any information I gleaned before from a combination of professionals and, you know, other parents on the trenches of this. So I really thought you would be a perfect guest. If you don't mind, I'd like to go ahead and introduce you. You're not only an awesome mom to miss Hannah, who has similar epilepsy and developmental delays as our children, but you also wear a lot of hats outside of that, can you tell me a little bit about that?

Shana 06:24

I wear a lot of hats. That is true. I have a 19 year old son, Ben, and I have a 15 year old daughter, Hannah, she has special needs. Then I also have my husband, and we have a dog and a cat. I work as a realtor. I also have other businesses that I'm self employed in. And so I do that, as well as helping other families advocate for their special needs kids mostly in the State of Hawaii, because most Medicaid systems are different in each state. And I'm more of an expert on Hawaii law, and how Hawaii is set up. But I would certainly also help people in other areas as well, as much as I could I could give them some knowledge that led me also into how can I reach out to more people? How can I make bigger change in the community. And so I sit on a Hawaii State Developmental Disabilities Council and I'm the chair of the health children's in youth committee. We work with legislation, mostly to help support people in our state with disabilities bring up new legislation that needs to be introduced as we get complaints from the community and things that that are going on in the community. And so those are just some of the hats that I wear.

Erica 07:48

That's a lot of hats! That's amazing. And yeah, you didn't hesitate at all to jump in and help us. And even though we lived in a different states, your personal experience with this process of appealing for items that maybe insurance has denied. It's still taught us a lot because across the board, we are talking about Medicaid, which is federal. So there are some governing principles and rules that can be applied nationally. But there are of course, a subset of rules that are applicable depending on the state that you live in. So can you tell me a little bit about your experience with these appeals and denials and how this first began for you?

Shana 08:34

Yes, well, when Hannah was born, you know, she was having hundreds of seizures a day. We were basically living in hospitals, the first couple years of her life, all across the country trying to figure out what was wrong. We didn't even know it was unknown etiology at the time, because she actually has a very rare gene mutation that they didn't even know existed in 2006. So we got very little answers.

Shana 08:58

And she just kind of got bundled into a diagnosis of Lennox-Gastaut Syndrome for her seizure disorder at that time. So Hannah had many other disabilities. Besides the seizures, she has global developmental delay. She has a cortical vision, blindness, something called dystonia - which is a movement disorder, cerebral palsy, and some other things. So she has lots of needs. So over the last 15 years, we've had to do dozens and dozens and dozens of appeals. I probably do for her anywhere from 2 to 10 a year. And sometimes more depending, you know, and some appeals are kind of small. And then other appeals are lengthy and more complex. So, but they're all kind of the same.

Shana 08:58

It's it's really interesting, because when I first got into this, I had no idea what even a timeline was how to how to do exhibits, how to access legal counsel, if you needed to all that kinds of stuff, I just had no background in this. So I met a friend who taught me how to do this because her daughter had very similar needs. And she was quite a bit older than my daughter. So she had already been through this. So she was intrical, and teaching us how to he advocate that could prevail with insurance companies, because it's not an easy thing to do. You're fighting people who are very powerful and have a lot of money, and clout, and attorneys behind them. And so it's not an easy thing to win appeals all the time with insurance companies.

Shana 10:45

Basically, this is kind of an outline of how I do appeals, when there's something that Hannah needs and there's been tons of things like we've talked about, there's things from specialized beds, ceiling lifts, wheelchairs, seating, devices, toilet chairs, bath chairs, medications, and continence supplies, g-tube supplies, excetera - it just goes on and on. So it's so many things, I always start a timeline. So like, you know, whenever anything is like not going well, that's when I'm thinking timeline. And so I can write down everything and kind of have tracking of everything that has went on every conversation that I've had with it. And sure doctors or nurses or other people that it's important to write down every email that's been sent out about whatever the issue is. So you can find stuff really fast when I'm going through my timeline. And I don't forget things because you know, over months and months, and sometimes years and years, you don't remember things, you know, is freshly in your mind. So this timeline is really helpful to spark, you know, memories, because what those become, are those become exhibits, for your court hearings or your appeal hearings that you're going to have down the line.

Shana 12:00

So you're going to have things like letters from doctors, or maybe emails even could be an exhibit that you've had with the insurer, you know, so there's all different kinds of things. So that's why it's so important to do your timeline. So you can gather your exhibits, you can stay organized, you can write everything down. And then once I get to that part, I kind of put everything together. I kind of do like a story, it almost becomes like a story like, here's the beginning and then here's where we are. And then this is as far as I could get. And now I need help.

Shana 12:32

In every state, there should be some kind of help or assistance that you can get for pro bono legal help. For example, in Hawaii, it's the Hawaii Disability Rights Center, you would call them and then you would tell them your story, you'd probably email them over your timeline, any letters that you've already submitted, or whatever it is that you know, you're you're stuck on with your appeal, trying to get that medication approved or that wheelchair, whatever it is, and then they can take a look at it and see if they can help you. And if they can't help you, they might be able to provide you with some other supports. If you just don't have a, you know, your own attorney for this, because I feel that if you don't have legal counsel of some sort, it's going to be really, really difficult to prevail in your appeal cases. But how do you afford to do it, and that's where the pro bono attorney comes in finding that whatever it is, in your state, becoming an expert in your state of who's providing all of these services to people with disabilities, which is mostly it's mandated under federal law under CMS, because they're receiving states, they are receiving federal funds, they have to make sure that they have these services set up for everybody. So it's kind of going into your own state system, figuring out how your status set up and grabbing those resources for your appeal.

Erica 14:05

Wow. Something you said about the documentation really helped me out tremendously, very recently. In fact, I would like to make the document that I created inspired by you available online to provide the others because having that timeline saved us when we were recently denied some critical respiratory equipment that I was really surprised they were trying to deny our kids from receiving. But the process of saving all the emails, saving all the letters and referring to something that you taught me in our conversation. So the Early and Periodic Screening, Diagnostic and Treatment benefit - it's a benefit that provides comprehensive and preventative health care services for children under the age of 21 who are enrolled in Medicaid. I'll tell you why when I shared this information with our DME, they were shocked. They had never heard of that before, I had to send them to the website. And that is ultimately what got as the supplies that we were requesting, and that we were appealing for. So how did you come about that?

Shana 15:22

Okay, so Hawaii actually is pretty in tune with EPSDT. And being a federal law that's mandated under CMS Center for Medicaid services, they have to follow EPSDT. For children who are 21 years of age and younger, they have a lot more rights. I mean, it's not just what your doctor has prescribed for your child with disabilities needs to be covered. It even goes a step further, that those children need to have these services for socialization, for the ability to thrive. So they get all of these more rights in this federal law. So we use the platform of EPSDT for all of Hannah's appeals, because they all apply.

Shana 16:14

The sad part about it is that these are federally mandated laws that our children are entitled to receive. But because of the way the system is set up, we have to fight for this entitlement. And that's the sad part about it. But that's the reality. And so you just have to really learn as much as you can. And I actually, I'm going to dig for the document that was written because it's very hard to find when you Google it, but I have it somewhere. And it's about 100 pages long. And it's the federal law written. And so what I did is I read that when I first learned about it, I read it probably like five times, and it's extremely boring. But I just I just read it because I didn't understand all the language. And I wanted to become familiar of how that language I could incorporate into my daughter's needs, whatever those needs are the wheelchair, the shower chair, the you know, incontinence supplies, the medication, whatever we were appealing, and how I could use that, to help, you know, prevail in our cases. And so that's what I had to learn, you know, a shift that my thought is to like, I have to use the law that's sitting in front of me. So I have to understand that first. And that's what the reading of it five times. And then I was like, Oh, well that, you know, as I read that paragraph, then I'm like, exactly. Now it makes sense to me how to put what my daughter needs into writing and ask for it that way. So it's not just saying, you know, she needs this because she needs this. It's like she needs this because she's entitled to have it and here are the reasons why you know, 123 from the law itself...does that make sense?

Erica 17:58

It does, it brings me to question though, in many of my personal experiences, there has been a therapist or a doctor or nurse involved, who's doing a lot of these authorizations and orders in dealing with the approvals and the denials. Very rarely are we getting our hands on it until maybe the DME contacts us or the person helping us has reached their second denial. And they're like, "it looks like we're not going to get this." So I'm curious, at what point did you learn to step in? Have you always been one to step into that process from the very beginning? Or is that just something that you've learned in your experience with Hannah and the dealing with the insurance in general?

Shana 18:41

Yeah, that's a really great question, because you're right. PA is typically happens - I call it PA, is Prior Authorizations - happen from the doctor themselves, or the the writing physician, you know, who's ever asking for that order from the insurance company. So typically, with Hannah, what happens like on the ceiling lift, I'll use that as an example. We knew that Hannah was growing, we knew that it was going to take a while to get the ceiling lift approved because it was a complex item, is high cost. And it's something that typically Medicaid doesn't approve. So I knew it was gonna take me a while so beforehand, I got to the point where we couldn't lift her anymore. I'm like, we better start now. You know, because it did take two years. I went through the appeal process, you know, number of appeals to get it approved. I went to her rehab doctor, I said, "This is what I think that we're going to need because it's the ceiling lift is not just to move Hannah around in her environment. The ceiling lift is also going to be used as a therapy aid for her because Hannah has osteopenia, brittle bones from the ketogenic diet, used for seizure control and medications that she's been on and lack of weight bearing throughout her life." So she has osteopenia, she has GERD secondary to the ketogenic diet, and so many other things going on with with her that being upright and weight bearing is huge for her. So how could we get her another device that we could transfer her if she needed to sling transport, put her in a harness if she was doing well that day, and she could actually walk around her room. Then it was also giving her that ability to explore her whole environment, which she's never had the opportunity to, to do unassisted.

Shana 20:33

So this, you know, giving her that ability, where she could go over to, you know, where her toys are, and be able to like, maybe pick out a toy for herself, being able to be at eye range with her peers, instead of always being on the floor or being sitting in a chair. You know, so she could actually have more social interactions. So there was so many reasons why we thought the ceiling of lift was going to be more ideal. It wasn't just for a transfer system, like a hoyer lift, it was, you know, a whole therapy system is what we needed. And we live in a rural community, Hannah's services are all at home, for the most part. And so we really have to have her room like modified into this, you know, it's a medical facility, it's a therapy suite, it's a school, it's a bedroom, it's you know, so it functions, it's kind of like a multi-functioning room for her.

Shana 21:26

It was it was a process, you know, this whole thing. So I went to Hannah's rehab doctor, that's where I started, I started with a rehab doctor and her PT. And because we don't have services in my state, to effectively service all of Hannah's needs, we fly to the mainland, and we go to a facility on the mainland. So she sees all of our specialists on the mainland, and then she has a PCP here. So we do fly over, I met with her rehab doctor and her PT. And I told him what my reasoning was why I think she needed this. And they agreed. So because I've been doing this for 15 years, and I don't like to bother physicians with things, I found the provider through the DME provider in that city, where we go to for specialized care that I work with for standards and all different kinds of equipment. They said, "Well, we don't do ceiling lifts, but we know someone that does in California that does Hawaii, and so we're gonna set you up with him in that was sure hands out of California." And he flew over to Hawaii, because I told him what I was doing. And he said, "Oh, I don't think you're gonna ever get this approved by insurance." And I said, "No, we will, it will just take a while and you'll just have to work with me. And we'll, we'll get it approved for Hannah." And so he's like, "okay," so he was coming over here anyway, to service other clients on the islands. And so he came over, and he did like a whole layout of Hannah's room, you know, and then that was submitted along with letters that I wrote, so I write most of the doctor's letters now, because I have 15 years of background experience. And, and I also work with my lawyer, and we write the letters for the doctors, because there's a lot of things in the letters that doctors don't know what to write. Because if they're not lawyers, you know, so there's certain keywords and certain things that we want to make sure that's in the letter that we're writing, you know, to submit with our PA. So we write the letters, and then I send it to Hannah's physicians, typically, and ask them to review the letters, edit out anything that's incorrect, you know, and then give us the letter back. So that's what he did.

Shana 23:37

So most people are not involved along the whole way of the process. But typically, I am, and I have a relationship with these physicians. You know, for - Hannah's been at this hospital for about 10 or 11 years now, we centralized to one location, so she sees every specialist there. So I have a great relationship with these physicians, and they know that I'm, I'm a strong advocate for Hannah's needs. And so they're willing to let me be more involved in that process because I like to make sure to kind of do it right from the beginning. Instead of having, you know, all these denials, denials, denials. And then because we didn't do something that we needed to do from the logistics side, and so you know, so just making sure that the order is correct, because we know what our state's going to want, how we're going to have to what we're going to need in those letters and everything. So I'm typically involved from the beginning, whenever there's anything that Hannah needs, and if I in sometimes I don't, I don't write the letters, the doctors will do it. And you know, sometimes I am less involved, but I will still ask for copies of what's being submitted, because that goes into my timeline. And that goes in and that becomes exhibits, that when if we do have denials, that I have copies of everything that's been submitted how it was submitted. So so I'm pretty involved, but a lot of people aren't as involved. Yeah, you are correct?

Erica 25:07

Well, you know, you're absolutely right, you raise a really great point in that doctors are doctors, really writing these letters is something they have to pick up on as time goes on. And as we know, we have some rare children with some rare diagnoses, and the likelihood of them getting really good at letters for kids like ours, is much lower than what you will learn in your experience in the amount of time you have with your child as an advocate. You are essentially handing them an awesome template, like you're giving them really great templates to use for kids beyond Hannah!

Shana 25:46

Yeah. And another thing is, is that Hannah needs so much, you know, and it's like, how are Hannah's doctors not going to get burnt out on us. And so that's another thing that just scares me. The reason that we are so involved is, well, there's a number of reasons. The first one is, we have been doing this for 15 years. And so we've been through so many appeals already, that we know the language that needs to be in these letters, where the doctors may not know that language, because doctors are doctors, not lawyers. So that's the first reason because in there certain points that we really want to make sure that we're hitting home and these letters.

Shana 26:29

And then the second reason is, is because I ask so much of these physicians for Hannah, because her needs are so high, that I do not want to burn them out. And then them not want to, you know, have Hannah, as a patient, I think it's really important to try to help and work as a team. And so that's kind of something that I've become more of an expert at, you know, over Hannah's life doing these appeals, so I can really do the outline for them, save them a lot of time get my points across, I'm still involved in everything, because I do believe firmly that you know your child better than anybody, and that I'll remember a lot of things that could be pointed out that people that don't live with Hana everyday necessarily don't even know. So there's not all these little things, that reasons why I try to stay involved in the appeal process.

Erica 27:26

Yeah. When you are involved in that, is the communication still primarily in the hands of the physician's team? Or are you submitting these things,yourself from your own fax machine, from your own email? How does that work, so that at least you're aware of the responses, and you're still in the loop?

Shana 27:47

Typically... So like for this ceiling lift, for example, once the PT and the physician and I all agreed on the type of device that that was going to be the most appropriate for Hannah, for all the needs that we were trying, you know, the multidisciplinary care that we're trying to give her, you know; being able to be transferred safely and to anywhere in her suite, being able to have access to all her stuff and have standing upright on her own, you know, all these things. Then I got together the layout from the ceiling lift company, I wrote the letter, along with my attorney for her physician, and we submitted it to him, he made a couple small edits and signed it. And then I gave him anything else that we we had gathered for that. And then I sent it to his his assistant, and they submitted it for us. So no, I didn't do the submissions, but I'm just really supportive and acting, uh, you know, at the same level along the process to make sure that the PA is being submitted correctly. So basically, I hand them all the information and say, "Here's everything to submit," you know, for the ceiling lift, and then they submit it. And then once it gets denied, then it comes back to me and then I take it from there for the most part. And I'm in charge kind of doing, you know, setting up my hearings, my appeals along with my attorney, I'm working in conjunction with my attorney.

Erica 29:20

That's amazing. I love that. I think that's gonna help a lot of people. I personally know it's helped me. There's another component that we talked about, that also came into play in my life very recently, which was the importance of your nursing notes. Do you remember that conversation?

Shana 29:44

Data, data, data!

Erica 29:48

Yeah, so I didn't realize how much what the nurses are charting and specifically how their charting would determine the outcome of your child's approval or denial of needed equipment, we recently ran into that. Can you tell me about your own experience, because what you shared with me taught me a very important lesson. And I still didn't incorporate it as thoroughly as I should have. So I'd really like to hear from you. Also, just how you got your nurses to understand that as well, because that that might also be a hurdle for some people is getting the nurses on the same page as you the caregiver.

Shana 30:30

So Hannah has around the clock nursing, and she has for over a decade. That was also another appeal, appeal, appeal, appeal, appeal to get the nursing, because we started out with nothing we had. I didn't even know what Medicaid was when she was born, I had no idea. Because I'd always been so healthy and been so lucky in my life that I just did, I didn't know I just did wasn't aware of what Medicaid was even about. So once I understood what Medicaid was, and how to start appealing, we started trying to get help for Hannah, because you're right, you know, you need some help families need help children need help. If you want your your medically fragile child to live with you and to be safe and healthy and thrive, you're going to need some help. You know, you can't do it by yourself. It's just not physically, spiritually or mentally possible to do it as much as we want to. As parents, we do need some help.

Shana 31:25

So we started fighting for nursing and we did get the nursing for Hannah, thankfully. And I've learned so much from the nurses. And basically, if they don't write it, it didn't happen. So that's why charting is so important. If it's not written down, it never happened. So we do nursing notes on every shift. We also do what they call a Mar. So we inventory all of her medications when they were given what medications are given. We also have a seizure charting. So every time she has a seizure, it's written down on a seizure chart, as well as each nurse has certain abilities and tasks. So I kind of tried to find everybody's strengths. And so I have one nurse, that's really good at charting. And so she uploads all of this information into a cloud system for us. So we can actually tell you like, it's called Seizure Tracker, calm. And so we can tell you when her last seizure was, if we use, you know, emergency meds, how much you know, the dosing was with emergency meds, how long the seizures were, how many seizures she had last week, last year, two years ago, etc.

Shana 32:32

So we have so much data going on, it's crazy. And I scan about 200 pages of data a month, just for Hannah's care to make sure and there's no reason that I do this other than to make sure that if they're trying to take away the care, we can document why she needs it. And what you were saying about the nursing notes circling back to that is so important. And we've actually just revised and I will share it with you, I will email you our revision of the nursing notes that the nurses do every shift because I've added not just the medical aspect of Hannah's care because you know, there's so much to that you have to do. Suctioning, you have, you know, vitals, you have seizure stuff, you have medications, you know. There's so many things on that. But also because our children, we have this wonderful federal law again, and I'm going back to it EPSDT, they have this wonderful ability to thrive, the right to be happy the right to live in your community. We also started doing all of our daily living skills in so that's also being charted because they're not just doing the medical aspect of Hannah's care, they're also doing those daily living skills, like the stander three times a day for an hour a time, the walker, the treadmill, the bicycle, you know, the my gaze system, other communication systems, horseback riding, getting out in the community. You know, whatever it is that we're doing with Hannah, because, you know, they're all they're doing so much more. And so we wanted to really give more of the accurate reflection of how much these nurses do with Hannah. I have a great relationship with her nursing agencies. She has a couple she has two nursing agencies because we live in a rural area, there's two on the island, basically. So we have to use both of them to make sure that she's fully serviced with her nursing. So when they need a nurse a lot of times like, because the nursing agencies aren't as organized as I am, I'll actually put ads like indeed or in Craigslist, or wherever and all find the nurses and all interview that. And so they come to me and we are talking about it and then I said you know yet you're actually working for the nursing agency, but you know, here's what we do with Hannah. And here's what our expectations are. You know, it's it's we want this, this and this, but, we want to make sure that, you know, she has that consistency of care, because the reason that she's healthy and she's alive, and she's able to remain in our home and community and be happy, and, you know, thrive is because she has that consistency of care. So we want to make sure that that continues. So we actually have like a daily outline of what we do with Hannah.

Shana 35:23

So you know, from eight o'clock to nine o'clock, typically, we do this, and from nine o'clock to 10 o'clock, typically we do that, you know, etc. So they already have kind of an outline, and they're in, they're trained by other nurses. And then when that training is over, because they don't get enough training, I'm, I'm the trainer. And you're just you know, and so I go in and start working with them. And then we have other providers that come out, like therapists, PT, OT, speech, Department of Education, and they're also getting a lot of information from those providers as well. So I'm very involved. I don't want to micromanage the nurses, but I also want to make sure that Hannah is getting that medical care, as well as all the other things that she needs that she's entitled to be receiving. And so her nurses wear a lot of hats. They work on the medical aspect of Hannah's life, they work on the spiritual, the educational, their friends, you know, they're, I mean, so it's kind of like they do everything, anything that Hannah needs throughout her day, to be supported. And they do that, most of Hannah's nurses have been here, anywhere from three to seven years is an average that we keep nursing, which is great. I have other nurses that have been here a decade. So you know, their family, they know Hannah, they know, you know, her routine, and they, for the most part, are happy to oblige, because we're not, you know, we're just trying to set up kind of like a holistic life for Hannah that looks at her whole body and mind together, because it's not just one thing that Hannah needs support on. Does that make sense?

Erica 37:11

Absolutely, I find that the charting is one of the biggest hurdles, we are definitely moving towards including those things in the notes, and incorporating the use of their equipments, massage, bathing, the basic hygiene things that I think Medicaid, anyone reviewing their charts, just forgets. When they see only the paperwork, they forget that this child will never be able to do these things on their own. And they need all the support they can get to have a safe oral cares routine to safely shower takes two people to do that. So incorporating that and then charting that mom had to help patient was choking. Those are important aspects. Because if we need to move to a different type of bathing system, incidents like that are going to be very important to have detailed, especially when we're looking at what aspiration from choking can lead to, it can lead to a really expensive hospitalization that we could have avoided with the right bathing equipment. Right?

Shana 38:30

Yeah, no, it's um...charting can be, because like I had mentioned before, you know, we do Mars, we do nursing notes, we do seizure logs, you know. So yes, charting is difficult for the time because they would rather be with the patient doing stuff with the patient. So we have routines for charting, because we have a lot of outside help coming into like PT, OT speech. So when those people come in and do things, like that's when the nurses will take, take the time, and then they know when Hannah doesn't need as much help when she's like in her sensory house, or when she's in her stander, or these other places that they can put her during the day is when they take advantage of this charting. And that's actually one reason I changed the nursing notes is because like, they would either have to write a whole page of documenting what they did for Hannah, which took so much time. So we changed it to just everything that we could think of that Hannah does during the day, and then they go in and they just put a time that they're doing everything. And so instead of having to hand write out sentences and sentences, or paragraphs for certain things, they're just like, you know, 1:15 to 2:15 - stander, you know, 5:15 to 6:15 - stander. You know, so that way, it's all documented, but it's like kind of quick note, it's sort of more on what the how you do it in the hospital, how a hospital charting system is, where they're just initialing that they did that task with that patient. So we've kind of converted over that system and then we also have a place for them to handwrite additional comments for that day for something that's not able to be charted on that piece of paper. And then they always leave a physical copy of that in a binder in the house. And then, you know, the nursing agency, of course, can have a copy as well. Since that revision, because like you were saying the time, the nurses are ecstatic, because it's saving them so much time on charting. So trying to streamline your charting, but still, and I think we're actually getting much more documentation this way. And it's saving them time. So how can you make you know, how can we get more information and save time? So it's been a it's been a win/win. So I will share that form with you.

Erica 40:45

I love it, I might adopt that. I'm so excited. So when they do switch to electronic, do you think you'll still incorporate your own hardcopy so that you have that structure that you created for yourself?

Shana 40:58


Erica 40:59

Yeah. I think that's great. What was the greatest lesson and takeaway from the experience of fighting CMS to cover essential equipment in your home for Hannah?

Shana 41:13

Oh, gosh, there's so many things, the main thing is, is don't give up. Believe in yourself and your ability to fight for what your children are federally entitled to under EPSDT. A very wise friend and my mentor advocacy mentor, had taught me something that was so very, very helpful. And she said to me, "Shawna, you're just being too emotional about everything, you get too upset, you're taking this way too, personally." And I said, "Well, how could I not? It's my child, I'm worried, of course, I'm emotional, and stressed and upset that she can't get a wheelchair or whatever it is." And she said, "You need to shift your whole mind thought, and you need to think of this as a business, or as like a task or, you know, something like that instead, and take the emotion out of it." And so I've been working on that now for 15 years. And sometimes I'm not able to do that, because I am a parent first. But her advice has helped me tremendously. And so that's why I set it up like a job, I do my timelines, I have my exhibits, you know, and I go through everything. And so it's more so it's more like a function instead of an emotional thing. And I love it when people tell Hannah "No," now, because I know I'm closer to Yes. So it's like, that's okay. You know, because we're gonna get there and we will prevail. And we do prevail on on everything, because she's federally entitled to have it. It's just I have to fight for it. So I do make it a game now. And it makes it that much more pleasant, and less stressful.

Erica 42:49

And like, I have to guess that there's nothing scarier on their end than a parent who is actually taking the time to fight back.

Shana 42:58

Yes, it's very hard to win when a caregiver is calm, has abilities, is organized, and has data.

Shana 43:08


Shana 43:09

And they might think, you know, they they're like, "Oh, no, here comes Shana." But it's because I do think of it as a job. And I'm not going to walk away and give up, and I'm not gonna let it stress me out. It's just part of the game. And we're just gonna keep playing like the Energizer Bunny, we just keep coming. Because we're parents. And I fight against attorneys who went to Harvard, who went to Stanford, who are way better at the law than I am and have a much better understanding of how to prevail in court cases.

But the thing that I have over them is that I'm a mom, and I love my daughter, and I will fight to the end of the earth for her. And so we that's what we have up on these people, and we'll work harder than any of them. And we'll stay up till midnight writing that letter for the doctor or, you know, charting that data or making those copies, you know, of those nursing notes, or whatever it is we have to do, because we're because first and foremost a parent.

Erica 44:08

Yeah, love fuels a lot of things I didn't know I had inside me.

Shana 44:14

It does! You're correct.

Erica 44:17

So what was the biggest surprise or hurdle that you faced in this process? And what advice do you have for other parents to avoid those?

Shana 44:29

I think the biggest thing for me was, how stressful it was. And learning how to manage that stress and that that energy. I think it's essential to remember to love yourself, and that you're, you also got to take care of you so you can take care of everybody else. And I think that gets forgotten a lot in advocacy for parents. And so if that's spiritual that you need, or it's exercise, or yoga, meditation, or what ever it is for you. That can help center you back and give you that strength to keep moving forward. That's, that was the hardest thing I think for me and just surrounding yourself around people who are bringing you up, and that are going to help support you, is just critical when you're when you're in our situation.

Erica 45:21

It's really good advice. Thank you for sharing all of this with me, I didn't know that there would be moms like you to just pass this like wealth of knowledge into my hands. And every time we have talked, I have just felt so energized and empowered.

Shana 45:39

And I'm so thankful that you're doing what you're doing, because this is what needs, you know, like you said, there needs to be a way to get this information out to other families who you know. I mean, I've been doing this for 15 years, but there's somebody that tomorrow is going to start this advocacy process for their child. And if we could save them some of the misery that we had to go through in learning some of these things, then you know, in your podcast is one of those visions and ways to get that out there. So thank you for doing what you're doing as well.

Erica 46:08

Thank you so much. This was awesome. I know it's going to help so many people. I'm elated to receive your emails, and I'll be sure to share them with everyone. I want to send air hugs to Hannah. She's the one that has taught you all these amazing lessons that you're sharing with everyone else. So please go and give her some kisses on her cheekies for us!

Shana 46:33

We certainly will. Thank you. It's just been an absolute pleasure to be with you today for having me. And please, anybody. or you. or anybody who needs help or advice - if there's anything that I can do to be supportive, please reach out anytime.

Erica 46:47

I will thank you.

Erica 46:52

Was I just in the dark about so many of these things? Like the importance of the way nursing notes are charted? The pro-bono disability lawyers, EPSDT? Or was this all news to you as well? I haven't ran this by Shana yet, but I am adopting her as my personal mentor. I hope you all enjoyed this conversation, and I hope you glean as much information from it as I did. Again, you can find the templates she discussed on our website located under the Resources tab.

If you can relate to this content, and you're interested in being a guest or hosting your own conversation, please don't hesitate to reach out to me. You can reach me through the website at You can also find Atypical Truth on Facebook and Instagram.

One way to help promote this podcast more widely, for those within our disabled and medically complex community, is by sharing it with as many people as possible. By simply taking a few minutes to subscribe, rate, and review this podcast; it will become more visible to those who are searching it out. (You can do so by following this link)

The beautiful soundscape behind this podcast is titled Rugla, it's performed by my favorite contemporary music collective, Amiina. The cover art for Atypical Truth was designed by Kendall Bell.

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