Show Notes

 

ABA Patient Advocacy was founded to help children with autism and their caregivers navigate and get the most out of treatments including ABA therapy, other behavioral therapies, and general healthcare.

ABA Patient Advocacy can also help you explore options for therapies. Not all autism therapy companies or providers are created equal. Danyell, the founder, is a Board Certified Behavior Analyst and a Board Certified Patient Advocate. Early in her career, she recognized that there are often communication gaps between providers and caregivers.

ABA Patient Advocacy was created to help bridge that gap. The purpose of ABA Patient Advocacy is to empower you with the knowledge you need to get the most out of treatments or therapies your child is receiving.

Website:     https://www.abapatientadvocacy.com/

Follow her: https://www.instagram.com/abapatientadvocacy/

                   https://www.facebook.com/abapatientadvocacy

 

Are you still in shock that you are a parent of a special needs child?
This show is for parents who are morning the loss of the life and child they thought they would have. For parents who are tired, lonely, and see no hope in sight?

You will learn how to deal with your non-verbal child with a sensory processing disorder, seizures, meltdowns, haircuts, and family trips. Embark on a journey of consciousness, self-care & meditation.

My name is Chad Ratliffe. I am a single father of 5 kids 6 years of age (8-14) and 2 with special needs. 5 years ago, in a nasty divorce, my depression led me to drug addiction and hopelessness. Today, I share with others a life I never imagined possible.

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SUMMARY KEYWORDS

aba, parents, families, providers, child, patient advocacy, patient advocate, services, reach, naked, navigate, people, feel, danielle, therapies, struggling, support, life, field, medical

SPEAKERS

Chad Ratliffe, Danyll

 

Danyll  00:00

Patient Advocate is someone that helps families or individuals kind of navigate the healthcare system. So my niche is working with families of kids with autism. So what I do is I provide informational support, I can help people kind of explore all their options, kind of learn about what's out there. I can help families make sure that different providers are talking to each other because that's really important, and kind of teach them about their rights as patients like such as informed consent, and how like, you should always be aware of what ever interventions are being used on your child. And as a patient advocate, I don't like make decisions for people or provide treatment but I provide support around empowering the families to get the knowledge to make the best decision for their kids.

 

Chad  00:57

Welcome to the daily naked parent podcast brought to you by Rocco blue. The first ever brand focused on supporting parents with special needs children. Naked parent nation is a group of parents with special needs children, who are willing to give honorable, stripped it all down and take a look at ourselves, our parenting, our family and our plans create a life beyond our wildest dreams.

 

Chad Ratliffe  01:30

On today's show, we'll be discussing how to know when you need a patient advocate for medical and behavioral health care. Hello naked parent nation and welcome to today's episode of The Naked parent podcast. My name is Chad ratliffe. And I'm your host. And before I introduce you to our guest today, let me start by sharing the naked parent nation offering naked parent nations a worldwide community of parents and professionals raising children with all kinds of needs. We come together to share Naked Truth support our fellow parents and inspire the inner growth that each of us needs to build the life and family of our dreams. For the parents that are struggling, we want you to know that we will love you until you can love yourself. For your children, we pray and send power from our collective group. As we come to understand our divine nature, we realize that there's no need to feel sorry for ourselves be angry or feel lack, we come to understand that our feelings of limitation and separation are only in our minds. Through Self Realization, we expand our consciousness so that the challenges that perplex us today, dissipate one by one until we're able to see and experience gratitude and beauty in everything just as it is. We have the power to create any kind of life we want for ourselves and our families. We do this by living in the naked President moment, one day at a time. If you're ready to take back your life or just continue your journey of awareness and consciousness, then let me welcome you to naked parent nation and the naked parent podcast. And before we get in to our conversation today, let's do a three minute grounding and centering exercise. This is the time for you as the parent or professional to just tap into your inner strength and get that space and recharge that you need. So if you want to sit up straight with your spine erect and just kind of feel your body and let your eyes close. And take a deep breath in. And when you exhale, let everything go. Take another deep breath in. Feel your body and exhale and let everything go take one last deep breath in and hold it at the top and then exhale, let it all go and forget about your breath and feel the peace within your body now that you've let control of your breathing, simply allow yourself just to be there Let the thoughts be there pictures of what is yet to come. And give yourself the gift of this moment as you're ready, taking a moment to turn inward and notice asking yourself how am i right now? How am I holding this day in my body just give the label of your feeling in one or two words, whether it's tension or excitement, anxiety, readiness for whatever is yet to come. Simply notice that feeling with a sense of curiosity as a child might look at the feeling with kindness, and love for yourself, with love for your showing up today. With your love for the entire world, you could slowly open your eyes and come back into the room I like just taking a couple minutes. Because it really can make a difference for me in my day and in my life. And the more I take those little moments the the better my life seems to be. But I'm excited to get to our conversation today with Danielle Linda bow. Did I say that right? Yes, he did. Welcome to the show. A little bit about Danielle. Before we get to our conversation, she started working with children with autism and their families in 2015. She spent the majority of her time working in the field of applied behavioral analysis and in schools within special education. She's recently launched her patient advocacy business, ABA patient advocacy, and she aims to empower Special Needs families to become informed consumers of medical and behavioral health care. Danielle, welcome to the show.

 

Danyll  08:09

Thank you. I look forward to chatting with you.

 

Chad Ratliffe  08:12

Yeah, where are you calling in from?

 

Danyll  08:15

I'm from Cary, North Carolina.

 

Chad Ratliffe  08:17

All right. All right. So you've been in the field for about eight years. What brought you to the field originally

 

Danyll  08:26

2015 is when I kind of learned about applied behavior analysis. And I already had kind of an interest in behavior. So when I learned that there's a field where you can work with kids and kind of use that behavioral knowledge. It sounds super cool to me. So I went ahead and started my master's and got my first job in ABA in 2015. I became a BCBA. In 2017. I kind of moved around between different ABA companies have also worked in schools a little bit. And last year is when I learned about the field of patient advocacy. And just based on some of the things I've seen in ABA, I thought that could be a really good way to like can I use my expertise in a different way. So I got certified as a boards, board certified Patient Advocate last year and launched my business in January.

 

Chad Ratliffe  09:23

I'm super excited to dig into what a patient advocate is, what a board certified patient advocate is, because we've talked about a lot of issues around ABA and services and and how to know when we're on the right path or how to know when we need to ask for more for our children. So can you kind of what are the things that fall underneath your umbrella as a patient advocate?

 

Danyll  09:54

Okay, so patient advocate is someone that helps family These are individuals come in and navigate the healthcare system. So my niche is working with families of kids with autism. So what I do is I provide informational support, I can help people kind of explore all their options, kind of learn about what's out there, I can help families make sure that different providers are talking to each other, because that's really important. And kind of teach them about their rights as patients like such as informed consent, and how, like, you should always be aware of what ever interventions are being used on your child. And as a patient advocate, I don't like make decisions for people or provide treatment, but I provide support around empowering the families to get the knowledge to make the best decision for their kids.

 

Chad Ratliffe  10:52

Can you tell us what informed consent is?

 

Danyll  10:55

So informed consent is basically, in any like medical or behavioral treatment, you need to know the risks and the benefits of any procedure that is being done. And really all provider should be, like going over this with you and getting your informed consent. But they don't always do that. So sometimes you have to ask for it. So basically, just like making sure you're aware of what's going on what procedures they're using, what are the possible risks of those procedures, and so on?

 

Chad Ratliffe  11:27

Are you working more with the parents than the children on in this relationship?

 

Danyll  11:33

Yeah, so as a patient advocate, I, it kind of depends on the child and their like capability to be involved. But I am mostly like working with the parents, but also making sure that if the child's ever able to express their interests or their preferences in any way, making sure that we're going according to that to

 

Chad Ratliffe  11:56

awesome, give us a scenario, what kind of issue is apparent? What's a parent struggling with? Like, what's an instance where a parent would be struggling and reaching out to you would help them you know, navigate that struggle?

 

Danyll  12:10

Good question. So kind of a general examples, if like, if your child's getting certain therapies, like most of the time, it's going to be ABA. But there are lots of other therapies. And if you find that the providers not really communicating to you, you don't really understand what's going on. Or they're kind of shutting you down. If you're trying to like figure out about second opinions. If that would be a good time to reach out to me I can I can help teach you about like, what kind of red flags to look out for? What are the green flags, making sure that you're knowledgeable about all the options? Because I mean, especially with ABA, sometimes they'd be providers will kind of think that they can do everything. But that's not always the case. So if you're ever kind of feeling confused, and not sure, if you're going in the right direction, that's your child's treatment, I can help you try to figure that out.

 

Chad Ratliffe  13:06

So a scenario that I found myself in, I have two children, and one's lower functioning. And it was always it's always been harder to get services for him, I presume, because he doesn't show as much growth or progress. That's my only guess. And the therapist kept canceling they just kept, you know, they would cancel right before the session, it was just excuse after excuse after excuse. And once they were showing up for only about 50% of their sessions. I'm thinking to myself, How do these people don't they need to make a living like I do? Or do they all have so much money that it's not, you know, it doesn't matter. And when I went to do some digging, I found out that they were billing 30 to 50 client cancellation hours per month, which means they were still getting paid for coming, which is why they weren't so concerned with not coming. Would that have been a time where I could have reached out to you to help me navigate that?

 

Danyll  14:10

Yeah, I'm kind of newer to like the whole health insurance side of things. But I definitely want to like help people with that type of thing. Kind of like looking at, yeah, like looking at what's being billed, what are the different codes mean? What providers should be giving the different codes, I can definitely help people navigate that. And it is kind of is sad that a lot of providers kind of sometimes engage in unethical practices. And I think it's just something I want to do is make sure that parents are even aware in the first place that that type of thing is happening. Because a lot of times like you know, you don't know what you don't know, if you're not like checking or if you just don't have good resources to get information.

 

Chad Ratliffe  14:52

It was interesting because I contacted the insurance company and they wouldn't give me the billing they said that that's they're not able to give me that information? And I said, Well, if you don't give me that information, who's checking to make sure that the billing is? And they said, Well, we're not allowed to give you that information, the only way I got the information was going to the company direct. And they gave it to me. And then I noticed that little line item at the bottom, and I said, Well, what's I've never cancelled this session in my life. And I just feel like it's, I'm in the process of starting my own ABA company, because I wasn't able to get my kids services. Wow, it's a six to 12 month waiting list. And once you get somebody, you know, you get them trained up, and then they leave because they're either not paid enough, or they don't like the job or for whatever reason, there's a lot of turnover. Is that been your experience as well?

 

Danyll  15:48

Definitely. I know, it's, it's tends to be different in different states, I think, what state are you in California, California. But yeah, in North Carolina to week, 10, I have a lot of turnover, and I'm still working part time and ABA while my business gets started, but I have had at most companies and my current company issues with, we wait forever for tech for family, and then it doesn't pan out, or there's lots of cancellations. So those struggles are kind of happening everywhere. And it's hard to know what the solution is. Because I feel like sometimes with AV companies, especially, I feel like so we have certain ethical codes that providers that we're supposed to abide by, but they're kind of in conflict sometime with the for profit nature of healthcare. So it's a struggle sometimes.

 

Chad Ratliffe  16:42

Yeah. Is there any way for a person to get help paying for advocacy, they're called regional centers, where we are and that's kind of the place you go, if you're to get a case manager to like, kind of get the process started to find out what services are available? Have you found that anybody can help cover the cost of patient advocacy? Or is it only on the family at this point?

 

Danyll  17:09

Um, I have just started my business. So I haven't like run into too much of that. But as far as like support with like, paying me as a provider, I don't think I don't see that happening. I know that sometimes. Like, if a family reaches out to me, and maybe they can't afford my services, I can try to like, figure out what other resources maybe would be lower cost that can help them. But like, yeah, not not really at this point. And like, we don't take insurance either, which is kind of a good thing and a bad thing, then we're not trying to appease the insurance company, but also like that funding options aren't available.

 

Chad Ratliffe  17:50

Right? Do you have to work specific to your region? Or are you able to advocate nationwide or statewide? How does that work?

 

Danyll  18:01

I can advocate nationwide, I'm most familiar with the with, like the autism therapy, kind of how it goes in North Carolina. But I but I really want to help people like all throughout the United States. I'll just have to kind of learn about the differences between different states, but I can help people, wherever they are in the US.

 

Chad Ratliffe  18:25

That's awesome. That somebody just give you a call, how do we how do we get in touch with you if we want to know, find out if you're able to help with a particular matter?

 

Danyll  18:37

Right? So my website is AB patient advocacy.com. There's information there about kind of how the process works and what my services are generally the hell's going to work is if a family reaches out to me, I'll schedule a 30 minute consultation with them. No cost to try to determine like, what are the basics of what are you what you need help with? Do we think that I'm a good fit? Or should I try to refer you somewhere else? If we decide from there, then it could be a good fit, then we'll do an assessment that where I asked you a lot more detailed questions, figure out exactly how I can help you. And then from there, we kind of make an agreement on what exactly like I think we should work on an agreement with the family and move on from there.

 

Chad Ratliffe  19:28

Right on so naked parent nation. Did you hear that? If you have something going on, you can call for free to find out if there's support available for what you're dealing with. So yeah, holding it inside and reach out for help. Reach me line number two. Okay, and please share it with us. And then if you'll also email it to us so that we can put it in the show notes, any kind of contact info, but But what is it?

 

Danyll  19:58

You can reach me at Eric? called 919-297-2707. And you can either leave a voicemail or text me,

 

Chad Ratliffe  20:08

awesome. Are you seeing? Are you seeing things that parents are doing that are kind of hurting their kids service? I mean, are there things that parents are doing that are kind of disrupting, you know, we're trying our best, but we're kind of hindering the pathway of therapy or treatment or help.

 

Danyll  20:28

Um, this is something I kind of touched on before, I think. But basically, parents don't know what they don't know. I like to tell parents as a general rule to like, just do research on autism therapies in general, making sure that like, you're kind of trying out everything that's available to you. I know a lot of people end up kind of just doing ABA. So I like people to know that there are options beyond that. And making sure that like, if you are confused about anything, making sure that you're asking questions about your child's treatment.

 

Chad Ratliffe  21:04

Yeah, that's awesome. So anything else? Is there something that you believe to be true that most parents disagree with? It's kind of a random off the wall one, but I was just checking to see if there's anything,

 

Danyll  21:18

I guess that I like to take a nuanced view to everything. Like you will hear some parents saying, like, all ABA is fine, or all ABA is bad. So I guess something that I like to get across to parents is just like getting trying to get information from multiple sources, get multiple opinions, maybe don't just take one person's bad experience or one person's good experience and take that for granted and think that your experience is gonna be the same.

 

Chad Ratliffe  21:49

I like that. I like that. So the name of your company is ABA patient advocacy. Yes. And if we want to know about possible services to help our children or if we want support in navigating challenges that we're facing, we can contact you. And you'll help us or refer us, is that correct?

 

Danyll  22:10

That's correct. Well, I

 

Chad Ratliffe  22:12

love what you do, then, because we need help. We need resources to help us navigate. Because there's so much that we don't know about, there's so many services we don't know about, then there's so many things within a service that we don't realize we're supposed to get, you know, like you said, we don't know what we don't know. Right? So I'm hoping that our listeners are encouraged to reach out to you ask you some questions. And I'm grateful that you took the time to be with us today. Just you know, from what we've talked about, or just on your heart, what do you say to the parent that's out there that struggling, feels overwhelmed, raising a special needs child,

 

Danyll  22:56

I would say like take it easy on yourself and know that like you're doing the best you can with the resources you have. And sometimes you might need help kind of figuring out what other resources could help you. So I'd love to be someone that could do that.

 

Chad Ratliffe  23:13

I appreciate you taking the time. If you ever have any content that you write or something that's specific to your field, we'd love to you know, post it on our site. So feel free to send us any of that information. And if you send the contact information, we'll put it in the show notes. And I appreciate you being with us today, Danielle.

 

Danyll  23:34

Great. Thank you. It's nice chatting with you.

 

Chad Ratliffe  23:37

All right, you have a great rest of your day.

 

Danyll  23:39

All right, you too.

 

chad ratliffe  23:44

This concludes our show for today. And I'd like to personally thank you for spending the time with us on a topic near and dear to our hearts. If you'd like to be part of the naked parent nation, and help us reach those parents that are struggling and overwhelmed. There's no better way to help them by subscribing rating and reviewing the show on iTunes. iTunes highlights the shows based on these metrics. And the more the show gets highlighted, the more opportunities people will have to be introduced to the show where they can hear that message of hope, or that tip that can change everything. So follow the link in our show notes. And we hope to have you back here tomorrow where we'll do it again. From the team here at the naked parent podcast we wish you the life you've always dreamed of and then some so long