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A Mom Who Fought With Law & Won

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

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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.

Links related to this episode:

Early and Periodic Screening, Diagnostic and Treatment

Lennox-Gastaut Syndrome

Medicaid Prior Authorizations

Seizure Tracker

Resources tab


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