34 - Amy Taylor and Navigating the Medicaid System 18/03/24

Here's what to expect on the podcast:

• Amy's social work journey and what her day-to-day life looks like.

• How can one become involved in Medicaid services?

• Understanding Medicaid waitlists and how they work

• How does an Individualized Education Program (IEP) support neurodivergent children in school?

• And much more!

About Amy:

Amy Taylor is a single mom with Bipolar Disorder, ADHD & Anxiety. She has two children with ADHD, one of which also has Autism. She is a social worker by day, working with many neurodivergent members and, an MBA student by night, and a podcaster on the weekends. She calls herself a Mental Health Warrior and hopes to help end the stigma against people with mental health issues and/or neurodiversity and hopes to spread some hope and positivity while she's at it.

Connect with Amy Taylor!

Website: https://advancingwithamy.com/

LinkedIn: https://www.linkedin.com/in/amy-taylor-bsw-mental-…

Facebook: https://www.facebook.com/AdvancingwithAmy/

Instagram: https://www.instagram.com/advancing_with_amy/

Connect with Samantha Foote!

Website: www.boisemusictherapycompany.com

Email: [email protected]

Consultation: https://letsmeet.io/boisemusictherapycompany/30-mi…

TRANSCRIPTION

This podcast is for parents like you, navigating the world of neurodiversity with love and compassion. I'm a neurodivergent mother of three amazing neurodivergent children and a board certified music therapist. Our mission is to create a supportive space where you feel understood, connected, and inspired.

With practical tips, strategies, and resources, we'll help you and your child thrive in your unique way. Join us as we dive deep into the diverse world of neurodivergent individuals exploring topics like ADHD, autism, dyslexia, sensory processing challenges, and more. We'll cover it all to empower, educate, and uplift both neurodivergent individuals and those who walk alongside them.

Together we'll create a world where every brain is valued and celebrated. We're excited to embark on this enlightening journey with you. We are your hosts, Samantha Fuh and Lauren Ross, and this is the Every Brain is Different podcast.

Welcome to the Every Brain is Different podcast. We're here with Amy Taylor. She is a single mom with bipolar disorder, ADHD, and anxiety. She has two children with ADHD, one of which also has autism. She's a social worker by day, working with many neurodivergent members, and an MBA student by night, and a podcaster on the weekends.

She calls herself a mental health warrior, and hopes to help end the stigma against people with mental health issues and or neurodiversity, and hopes to spread some hope and positivity while she's at it. Amy, you are busy. Yes, I am. Thank you so much for taking the time to be on the show with us today. Oh, thank you for having me.

So can you fill in the gaps a little bit about how you're involved in the neurodivergent community? Anything that I might've missed? Well, 

I'm a social worker, like, like you said. And so during the day I work for a Medicaid organization and I work. With disabled members, um, they might be frail and elderly, um, but a lot of them are intellectually and developmentally delayed and a lot of them have autism and that kind of thing.

So, um, I help them get services in their home or, um, help them get work in the community, that kind of thing. And then, um, like you said, I, I myself have ADHD and my children have ADHD and my daughter's on the spectrum. 

Yeah, so you're definitely like involved yes. Yeah, definitely 

in it. Yeah 

So I would love to talk about your social worker Experience.

I don't think we've had someone on the show that does that Can you tell us more about your journey how you got into it? And what does your day to day look like? 

That is a funny question because, um, I didn't know I was getting into it. Um, I did social work for years. I worked in domestic violence shelters, and then I got a little burnt out and decided to do something different.

And my mom said that there's this place hiring and I hear that they're, you know, a good company. But I don't know exactly what they do and I was ready for a break. So I thought, okay, so I go there and they offered me a job and it paid well, and I thought, okay, and I asked them what it was and they, it was a startup.

So they had never done. This thing before so they didn't really know they knew they were going to be a Medicaid insurance company providing that for the state of Kansas, but they didn't know what exactly my job would entail. And I thought, hey, you know, I'm in for something new. So let's try it. What's the worst that could happen.

And 11 years. 

Oh, wow. That's awesome. Yeah. Yeah. I love it. Um, that's what I told one of my employees. I just hired her. She's just out of college and she's like, so what am I doing? I was like, well, we're just starting the service, so you get to build it. She's like, that's great. Yes. Yeah. But, um, so what would you tell parents who may be their kids or their, you know, their adult children?

Need these services. How do they get involved? How do they get the services or work with you? 

Well, they would have to go through the state and apply for the insurance, the actual Medicaid, and then they would have to apply for what's called a waiver. It might be called different things in different states, but it's basically the same package.

And, uh, unfortunately there's usually a wait list right now. It's around nine years. So yeah, it's incredible. So, um, I hear that the government is trying to work on, uh, providing more funds so that that can. Be decreased, but at this time it's, it's very long waiting list. And then, uh, once you come up on that waiting list, I give you a call and say, I want to come help you get services in the home.

Um, I come and assess you, ask you questions about what kind of needs you have and just kind of get a full picture of who you are and. What you want to do with your life, whether you want to work, whether you want to go to day services, um, whether you need someone to come stay in your home and help you take a bath so that you don't have to go to an institution.

So that's, that's basically how that happens. 

Yeah, so that is a really long waiting list. Yes. What do people do? I'm still trying to process that. Yeah, yeah. I'm still trying to process that too.

What do people do? Like, what do you recommend they do while they're on the waiting list? Like, what other things can they do? 

They can still get a case manager through the state. Um, so they basically would get someone who would provide them with resources in the community. It just wouldn't be from Medicaid and it wouldn't be someone coming into your home to help you that kind of thing.

It's. it would be a lesser amount of services. So a lot of people basically have to rely on family and friends and neighbors and hopefully they've got that available. 

Yeah, so these are the adult services that you're talking about, right? Or is it the same? It's the same wait list for both? Yes. Oh, okay.

That is long. So, um, yeah. So what other strategies or resources do you recommend for parents that are You know, that are waiting or just that have the services, but they might also benefit from something else, 

right? Um, I definitely recommend they get hooked up with a case manager. We call them targeted case managers in Kansas And then I recommend they get involved with an autism family support group.

I know there's one Nearby me that I actually go to and then you're involved with other families who are either in your shoes, or they've come off the wait list, and they've been in your shoes, and they can provide advice and resources. 

Yeah, definitely. I know in our area, like Idaho autism moms is a great resource and you just have all sorts of parents and their wealth moms that some of them, you know, have been in the community for.

Decades and some just got a diagnosis yesterday, so we're all helping each other, um, just get the resources that we need basically and get, you know, and also when I feel like when you get diagnosed, they just slam you with all these things. They either give you everything or they give you nothing, you know?

So when my youngest got, when my oldest got diagnosed, it was, well, Go to Autism Speaks, and here's a pamphlet for a research study that they're doing. And that's all they told me. They didn't say anything about Medicaid, nothing about, you know, like, behavior intervention or music therapy or aqua therapy or anything like that.

It was just, here's a study that we're doing, you know? And then when my youngest got diagnosed, it was like, here's all these resources! And I'm like, what are, and I'm in the field, so like, I know kind of what they are, but that's it. I know a lot of parents, like, they're like, what, what are these resources?

What do they mean? Are they right for my child? And it's hard to know what's right for your child because you don't even know what it is. So I'll have parents calling me and they're like, well, my kid likes music. So is music therapy right for them? Like, is it going to benefit them? And so then we have to talk about, you know, how we use music functionally and what we use music for in music therapy.

But I, it would be so hard. I do not know how parents do it when they don't, when they're not in the field. Like I was confused and 

I'm in the industry. I had the same situation because my daughter is 13 and she wasn't diagnosed until, uh, 12. So just about a year ago, I took her in at five and they told me she had all the signs and symptoms, but she made eye contact.

So they wouldn't diagnose her. 

So. 

Luckily we were involved in a school system that was incredible and gave her all the support she needed anyway. Then when she went to middle school, everything blew up. Mm-Hmm, . And that's when I took her back and said, listen, you guys need to diagnose her. And so they looked at her, a different hospital, looked at her and said, I don't know how the first place missed this.

And, um. I was lost too, because I didn't qualify for Medicaid, so I couldn't get the services. That I would have given people, even if I waited on the wait list and I went to get a targeted case manager and they said, do you have Medicaid? And I said, no. And they said, then you would not get us. You would go through this other department, which I can't get them to call me back.

So luckily, um, I've got a lot of help from her school, but yeah, I was in the same boat. 

Yeah, that is so frustrating that you just get bounced from one thing to the next. And I understand that everyone's just doing their best, but, um, it's super frustrating when we. Got Medicaid for my, uh, middle child. They lost his application.

And I called, and I was like, So, it's been a really long time. I'm just checking in to see how it's going. And they're like, Oh, well, we passed this application onto this person. And they're like, Well, we passed it onto this person. And then this other person was like, I honestly have no idea where it is.

Like, wow, cool, so, and I've heard a lot of parents say that the Medicaid system is so hard to navigate that it's just not worth it. They would rather just pay out of pocket or not get the services at all. Or just not even bother with it because it's so hard to navigate. Have you run into that? Have you heard of that?

I 

have heard that complaint before, but normally they go ahead. The people I know go ahead and get it. I even applied for Medicaid for my daughter because I was told by one person that because she has autism, she would qualify for Medicaid regardless of what I had personally from my. Employer. Um, but that's not the case.

They, they sent me a letter 30 days later saying you don't qualify for Medicaid cause you have private insurance. And I'm like, okay, but I'm like right on that borderline where I make enough money that I don't qualify for Medicaid, but I don't make enough money to pay for all her 40 co pays and her 60 medication.

And then, and there's several of those, not just one, you know, so. Yeah. I feel 

like so many people fall into that like, cusp of like, not quite enough, but just too much to get any help. Exactly. That must be so frustrating. It is. 

So I know in Idaho, they have the Katie Beckett waiver, so it doesn't matter what you make as long as Your child has a diagnosis and they meet the criteria, so they have to be, um, they have to get like low enough scores that they qualify, but it's hard because some, like my son, he had to be, he has one percentile point away from qualifying for like school services.

And so, but then we would go. So then we would go to like, this is when he was in preschool, so he didn't qualify for the school services. And then we took him to a typical preschool and they're like, well, he doesn't belong here, like, we don't know what to do with him. And so that's just so hard to be in that situation, like, you don't qualify for, you know, the therapy and stuff, but you're not quite up there to where you qualify for like the typical developing programs.

And we got lucky and found a preschool that worked with, um, what he needed. But I know a lot of parents just, they can't find that. It's so hard. 

No, I actually, my ex husband, my daughter's dad, Has his grandkids that he's raising, and two of them are autistic. And, um, they actually got kicked out of the daycare they were in because of the behaviors.

And so they finally ended up in a daycare that is subpar, if you ask me. It's not somewhere I would want to take my child. But that is what they had to do. 

Yeah, you just have to do what you can, you know, do you have any recommendations for people who might be in that situation or any resources that they could look for?

And I don't know if you do, but I'm just asking in case. 

No, I wish I did. If I did, I would have offered them to him. I, yeah, daycares are hard to find that you can afford and that you can actually, they'll, you know, be in a place to help your children out instead of just. Become upset with their behaviors.

Yeah. Yeah. And it's so hard to educate, um, you know, daycare providers or preschools about your child, you know, because within autism. There's also like, pathological demand avoidance that looks like defiance, but it's, they're not being defiant just to be defiant, it's a whole thing, you know? So, it's so hard to get people to understand that if they, if the kid could do better, then they would be doing better.

Like they're not. Misbehaving or whatever, just to do it, you know, they're trying their best, 

right? And I think that's interesting because my daughter, um, I'm a single parent and I listened to my mom and my dad a lot. And my mom would say, she's so spoiled and she's so defiant. And, you know, she just tells, you know, all the time and, you know, I have holes in my walls and things like that from when she was having meltdowns and, um, nobody would understand because I'd already been told she didn't have autism.

And once I found out that she legitimately had autism, uh, This relief and at the same time this guilt that I hadn't realized that all along that I hadn't pushed it years ago. That I had given up and I totally changed the way I parented. I read all of these books on girls and masking and, and autism and just, I mean, cause working in that field is one thing, but living it is another.

And I totally reworked my parenting and she has, she has done a 180. She's like another child. She's so much calmer. I'm calmer. That's why she's calmer. So yeah, the diagnosis, I don't know. People that say diagnosis doesn't matter. It mattered to me. 

Yeah, for sure, because then it just gives you, I feel like it, when you get a diagnosis, it gives you guidance on what to do and understanding of yourself, if you're getting diagnosed or understanding of your child to know that they're not typically developing.

So here are some things that have worked for other people like them. You know, not everything works. It's just like any kid, like. Just because someone's labeled neurotypical doesn't mean that they're going to be, you know, like the same as everybody else. Um, I really appreciate that you said, you know, you researched, you looked into things and you changed your parenting to fit what she needed.

And her needs were met, and so her, you know, her behavior did a 180, like you said. Hey there, it's Samantha. Are you a dedicated parent overwhelmed with navigating the unique challenges of raising a neurodivergent child? You find it tough to understand impulsive behaviors and manage transitions. address educational concerns, handle sensory stimulation, and navigate social interaction struggles.

The good news is you aren't alone. Here at Every Brain is Different, we're excited to announce our new membership program, Parenting Your Neurodivergent Child. This is a community of parents working to enhance connections with their kids and gain a deeper understanding of their unique needs. With expert insights on positive parenting strategies and neuroaffirming practices, You will have concrete strategies to help your child succeed.

You'll have opportunities to ask questions, hear from other parents, and feel empowered as a parent and finally feel peace in your home. Join us on the second and third Thursdays of each month on Zoom. Visit www. everybrainisdifferent. com for more details. Let's embark on this journey together. Yeah. So can you just tell us more, like what, where did you go for guidance or what books did you read that helped you understand?

The diagnosis and masking, and for those who don't know, masking, because I was talking to someone, they're like, I don't know what that means. Um, so masking is just when a neurodivergent person does things to appear neurotypical. So they'll hide who they really are, they won't do things, or they'll do certain things to make it seem like they're not neurodivergent.

Is the way that I understand it. So, what, like what books did you read? What resources did you use to understand how to better serve your daughter? 

I, I basically went to Google and Amazon and found everything I could. I can't even tell you how many books I read. Um, but they all were something like unmasking girls or, you know, that kind of thing.

And, um, She really did that really resonated with me when I read those books because she would come home after school and that's when she would have her meltdowns. And I realized after reading those, it's because she was exhausted from masking all day from, and she would come home. One of her big things, her stems is she likes to walk back and forth and back and forth and back and forth, you know, where the carpet out and she can't do that at school.

So she would come home and do that and have a meltdown. And, and now I totally get it. 

Yeah, yeah, I forgot what I was gonna say. But I Like that you allowed her to have that time after school because school is so stressful Especially when you're like trying to hide your true self all day, you know so then you come home and you're just like I'm done my Someone that I know like their mom was like why?

Why do you act so awful at home, but you're amazing at school and she's like I can only Hold it together for so long. Do you want me to hold it together at school? Or do you want me to hold it together at home? Because you have to pick one. And I was like, I get that. Like, it's hard. Especially when schools don't, um, give you the support that you need as a student, you know?

There, I think schools are getting better. I IEP meeting for my son. And they wrote a behavior plan for him. And I was worried about what was going to be in that behavior plan. But they did so good. They're like, we're gonna have the teacher Have a two minute conversation with him every day just for connection.

It's not going to be demanding of anything for him. It's not going to be asking him to do anything. It's not going to be anything other than let's talk about what you want to talk about to build a connection with the teacher. So that was one of the things and I guarantee you like five, 10 years ago, that wouldn't even been thought of, you know?

So I'm, I really appreciate it because I was scared to go to that behavior planning meeting out. Cause I, I know what I worked in a school, what? 12 years ago and what was written in behavior plans then was mostly like, okay, if they do this behavior Then this is how you react and now the behavior plans are let's do all these other things.

So the behavior never happens Yes, so I love it. I love that that's the direction 

that they're going in. Well, and I think it's great that they're taking those two minutes because that little bit of time doesn't sound like much, but it's everything because my daughter and I did play therapy when she was younger and they had us do 10 minutes a day of just playing what she wanted to play the way she wanted to play it.

And she was in charge and that 10 minutes a day made a big difference. 

Yeah, I bet it. Yeah, I totally agree with that. Um, I was talking to somebody the other day who said their daughter is in a bunch of different therapies. Adults are always making, you know, demands of her. And so if I could just please let her choose as much of the music therapy session as possible to allow her to have some semblance of control in her life, that it would be appreciated.

I was like, Oh my gosh, I get that. Like if everything was dictated to you and you were in all these therapies, like at least one therapy a day. You're being dictated to like do this now do this now do this like you would feel no control in your life And of course you're gonna like act out, you know, like what they say in quotes You're gonna, you're gonna have maladaptive behavior.

You're gonna do things that you might not normally do just so you can have some control in your life. 

Yeah, you can't blame them for that. 

Yeah, not at all. She, yeah, that, that girl is funny. She's like, I'm not doing that. Okay. What do you say to that? Like, yes, you are. Okay. My, um, my son does that too. He's, when he was in, uh, soccer, his coach was like, you need to run.

He's like, I'm not a running person. Not going to do that. Okay. Why are you in soccer then? Anyway, that's funny tangent, but yeah. So we are almost to time. Um, Do you have any other resources that you want to share or anything else that you want to share with us? 

Um, no, if anybody's interested in my podcast, they, they're welcome to come to my website, which is just, uh, advancing with amy.

com. And all my, uh, podcasts are on there. And if anybody's interested in guesting, my guest form is on there as well. 

Awesome. Yeah. That's what I was going to ask you next was where can people find you online? So I, yeah, your podcast is awesome. So definitely check that out. And last question is, what do you do for fun?

What do I do for fun? Hang out with my friends. I have two best friends. One that I've known for, this is embarrassing, 45 years and she knows everything about me and so I can cut loose and be myself and it's great. 

That's awesome. You definitely shouldn't be embarrassed 

about that. 

You should be very proud that you've maintained our friendship.

Friends are hard to find, especially as an adult. So, thank you. I love it. 

For sure. Yeah, Lauren knows everything about me, so we'll have to be friends forever in case she ever gets mad and she'll like, share my secrets, so. Uh oh. 

Got a vault of blackmail 

material 

for 

everybody. Yeah. But, thank you for coming on the show, we really appreciate it.

And thank you for your 

time. Thank you for having me.

Well, that was fun. What did you think, Lauren? What was your favorite part? 

Um. I had, not necessarily that they were my favorite, but they stuck out to me. Um, what the hell, she's in Kansas? Yeah. Is that what she said? Nine years? Nine years. That's too long. Um, but I, I was very irked when she said that her daughter didn't get the diagnosis the first time because she had all the other signs, but she didn't make eye contact.

Or she made eye contact. And that just infuriates me that we're like still going off of supposed just stereotypical known Traits when there's so much and then also with girls being like documented like not diagnosed sooner and it's because they are better at mask masking and and do that and it's so frustrating that that doctors don't see past that, um, hopefully that's improved since then, but yeah, 

when, when my middle kid was diagnosed, they diagnosed him because he didn't make eye contact.

And they didn't mention any of the other things. And so at first I was like, well, he doesn't have autism. Like, cause he's like partially blind too, you know? So I'm like, well, that's a weird thing to be going off of when he has like eye issues. But the eye contact, like that is such a huge part of diagnosing, I feel like.

And I don't think that that should really be part of it. Cause there's so many kids that just, they Don't make eye contact, or they do make eye contact, but There's so many other things going into it. 

Yeah. I don't even like to make eye contact. 

I know. I'm an adult. I was having a conversation with someone the other day, and they made such intense eye contact, like, they did not look away from me.

It makes you 

uncomfortable. And I 

was like, just looking over here, looking over there, 

and I was like, what is happening right now? I'm already worried about, like, social interaction, let alone, like, me monitoring my own eye contact, like How long, and am I being weird about it, and then to have someone else just like 

Yeah, 

stare at you.

Yeah, 

I did the same 

thing. Half the time I don't focus on the conversation. I'm just like, have I made eye contact long enough? Okay, now I need to look away. Okay, back to the person. 

And then another thing that stuck out, and again, this is something that I teach in training, is Control, like one of the biggest setting events that will probably influence a negative behavior later is lack of control in their life, lack of control to make choices for themselves.

And if you're being told to do things all day and you don't get to have any input, like. Of course you're going to, like, have a behavior later, and it's probably going to be a negative one. Um, and so I think any time that there can be choices where we can ask instead of tell is always going to be more beneficial.

Yeah, yeah. Something that I learned from my son's occupational therapist was, like, even if they're Angry or something you instead of being like you're mad. Why are you mad blah blah blah, you know Like and demanding an answer from them. You could be like I see that you look angry and just make observations instead of being like, why are you mad?

You know, because then that just validates the problem. Emotions. Validate 

emotions. I teach that too. It's important. Like, I see you look angry or frustrated. Is that correct? And then we can go from there. 

Yeah. Yeah. Definitely give choices. Because if you think about it, like. Kids that are diagnosed with autism and other things, they have so much therapy, and in therapy, historically, it's changing, but historically, it's all been about compliance.

So how can we make this kid comply with everything that we're doing, you know, and they don't get as many choices Which now it's changing and I'm so grateful that the therapy world is changing And it's more about making a connection with people learning how to make you know Those social relationships and build social relationships over do everything I say.

Yeah, 

so 

Yeah, 

yeah, and like we're talking about with Jimmy the IEP meetings Um, let the kids come to their IEP meetings, let them have choices, ask them what they need. And if they say I don't know, or they say, you know, whatever. Then you can go from there, but at least they know that you want their opinion.

Yeah, and that's another thing that we kind of preach as well, um, especially with our, you know, adult participants is that their implementation plans and things, it should not only be like What's important for them to learn, but it should be what's important to them specifically of what they want to get out of it and that's why they should be a part of those discussions.

Yeah, yeah. I always ask my music therapy clients and the behavior intervention clients. What do you want to learn? What do you want to get out of this if it's appropriate if they're two years old and they're not talking? 

Yeah, 

of course. I don't ask them, but if they're like, 11, 10 and be like, what do you want to learn?

Why are you here? You know? Exactly. Yeah. But anyway. Well, thank you all for listening this week. If you have feedback for us, we'd love to hear it. Let us know what you liked about the episode, what stood out to you, share it on Instagram or. Wherever you want to share it. 

And don't forget to check out Amy's podcast.

And check out Amy's podcast. It is a good one. So, we will see you. 

Thank you for listening to this episode. We hope the discussion on neurodiversity has provided you with support, understanding, and inspiration. If you found our podcast valuable, please share it with others who may benefit from our insights and leave us a rating and review on Apple Podcasts.

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