Episode 133: When the System Underestimates You: Fighting for Inclusive Healthcare

What does health equity actually look like for someone living with a disability—and what happens when the healthcare system makes assumptions instead of listening? 

In this episode, Sandy speaks with Daniel Hodges, attorney, healthcare administrator, disability advocate, and president and co-founder of Peaces of Me Foundation. Daniel shares his deeply personal journey of living with multiple disabilities, navigating complex medical conditions, and confronting discrimination within healthcare and other systems.

Daniel recounts the painful experience of having his ability to parenting questioned while his infant daughter was receiving cancer treatment, simply because both parents were blind. He explains how bias, inaccessible facilities, inadequate training, and a lack of representation continue to create poorer healthcare experiences for people with disabilities. 

Sandy and Daniel also discuss why communication, trust, and rapport with a provider can be just as important as credentials—and why patients must feel empowered to understand their conditions, ask questions, and seek care that respects their lived experience.

The conversation also highlights the mission of Peaces of Me Foundation, which connects individuals, families, providers, and organizations with education, professional training, peer support, and accessibility resources. 

Daniel offers a powerful message of hope: authentic inclusion is possible when we stop treating equity as a box to check and begin creating solutions alongside the people most affected. 

This episode is an important reminder that accessibility is a human right, every patient deserves to be heard, and meaningful change begins by meeting people where they are.

Resources:

Peaces Of Me Foundation

PlaybookAIPartners - AI Solutions

Playbook AI Partners Podcast

Want to be a guest on Get Savvy...Demystifying Healthcare? Send Sandy Kibling a message on PodMatch, here: https://www.podmatch.com/hostdetailpreview/getsavvydemystifyinghealthcare

Transcript

SPEAKER_00 0:00

I I always mentioned that part in as well as saying because of both parents being blind, myself and my ex-wife, we actually had the fight to keep custody of our daughter while we were giving her the cancer treatment she needed because the various medical staff didn't believe that blind people could successfully parent, even though we were changing diapers, we, you know, she had nursed successfully. We had met every milestone along the way as quote-unquote competent parents, but the level of stigma that we were uh living with and having to constantly battle was very pervasive.

SPEAKER_01 0:43

If health parents ever left you feeling frustrated, overwhelmed, or it's right now. Welcome to get fine healthcare weekly podcasts for weekly healthcare topics, hello everyone.

SPEAKER_02 1:19

And before we jump into the show, I wanted to take a quick two minutes and let you know that I do have a second podcast called Playbook AI Partners. You can listen and learn from guests who talk about the latest AI trends, or sometimes it's just me and the mic and I'm sharing different things about AI that I hope you find helpful. Because let's face it, AI is the hype and it can be a bit overwhelming at time. In fact, have you ever opened an AI tool, stared at the screen, and thought, okay, now what? Or maybe you've typed in a question received, you know, long answer, perhaps not the right answer, and somehow ended up more confused than when you started, or perhaps you've watched a video promising that one magical AI tool is going to completely transform your business by lunchtime. And then lunchtime arrived and you are still trying to remember your password. Let's face it, we've all been there. That's exactly why I created Playbook AI Partners. There's also an AI mini solution locker where you can access bite-sized training, 20 minutes or less of low risk, low cost, but high value. But really what I created, the Huddle, which is a learning community, and it really is about people who are curious about AI, but don't want to figure it out all alone. We all know AI is moving fast, there's a hype, there's a new tool every day, and trying to keep up with everything is whether it's a tool, an update, a prompt, a platform, is just incredibly confusing and no one has time for it. But here's the great thing: inside the huddle, we slow things down, we cut through the hype, and we focus on what you can actually use. We explore new tools together, we answer real questions, we share practical ideas and help you take the next step without the jargon, the judgment, the pressure to become an AI expert overnight. I don't know about you, but I don't need another giant webinar where there's glitter, pom-pomps, whatever, where you disappear in a break room with 600 strangers. You need a place where you can ask, can someone please explain this to me in normal language? And receive an answer you can actually use. That is the power of community, and I really think that is the way to stay current on AI without getting confused and spending a fortune on subscriptions you likely won't use. For the month of July 2026 and through August 15th, 2026, it's no cost. It's free. Come join us in the Huddle, see what we're all about. You've got this, you don't have to do it alone. And now on with the show. Well, hello everyone, and welcome to the show, Creating the Healthcare System That Everyone Deserves. Health equity is one of those topics we hear about often, but what does it really look like in everyday life? What does inclusion truly mean or someone living with a disability? What can you do to better advocate for yourself in systems that often feel confusing, dismissive, or stacked against you? In this episode, we dig into how equity and inclusivity show up in our society today and where we are still falling short. To help us get into this topic, we have Daniel Hodges on the show. Daniel is a lawyer. He has his master's in health administration and is a thought leader on accessibility and authentic inclusion of people with disabilities. Daniel is the president and co-founder of Pieces of Me Foundation, which is a nonprofit that he started while he was in law school. As an individual who lives with multiple disabilities himself, he understands firsthand how vital this work is. Welcome to the show, Daniel.

SPEAKER_00 4:53

Thank you for having me. I've been looking forward to this conversation.

SPEAKER_02 4:57

Oh, likewise as well. Well, you have a fascinating story. So I thought we could start with that telling us your story and how it has led you on the journey that you are on today.

SPEAKER_00 5:08

Yeah. So as you mentioned, I identify as having multiple disabilities. One of them is a rare form of retinitis pigmentosa that I was born with. Um, so that is an eye disease that resulted in me having total blindness in one eye and very limited eyesight in the other. I was also born with a connective tissue disorder called Ayler's Danler syndrome. So it that impacts the collagen, which is the most prominent type of tissue in your body. So, you know, it impacts joints, muscles, soft tissue, pretty much everything you can think of. And I I've lived with these things, and I've had a lot of negative expectations stressed upon me, had an educational path that was unconventional, and also a path as a patient that has been full of peaks and valleys. I tell people that I really started to learn about the ins and outs of a healthcare system as a teenager when my dad was moving with uh Asian orange poisoning, so a progressive neuropathy from that. And he passed when I was 23 after battling that for several years and not getting the help he needs, followed by my ex-wife and I having our first daughter who was born with a rare eye cancer called retinoblastoma. And I I always mentioned that part as well as saying, because of both parents being blind, myself and my ex-wife, we actually had to fight to keep custody of our daughter while we were giving her the cancer treatment she needed, because the various medical staff didn't believe that blind people could successfully parent, even though we were changing diapers, we, you know, she had nursed successfully. We had met every milestone along the way as quote unquote competent parents, but the level of stigma that we were living with and having to constantly battle was very pervasive. And so all of those things, and then several others, led to me eventually going to law school with the intention of practicing at the intersection of healthcare and civil rights and getting my MHA as well, because I wanted to take my lived experience and my expertise and use it to create solutions that would actually elevate the patient experience and the provider experience for everyone who's involved.

SPEAKER_02 7:42

Wow, what a story. Well, a couple things come to mind. And the first I would say is you mentioned the provider, and I'm so glad that you did. And I say this often, you know, it is it's a partnership in health between the provider and certainly you as a patient. So that's always important. But what the second thing I wanted to say, I'm really sorry for what you've been through, but at the same time, I'm grateful that it has given you this um this mission, if you will, to really help others. So I have to say, I'm my third point is I'm really taken back, just my heart kind of sought for a minute when I heard you talking about here you are with your daughter trying to get the care she needs, troubling for any parent who hears a cancer diagnosis, and you're battling equity and and and truth and trying to keep your child. How how does that happen?

SPEAKER_00 8:32

Yeah, and unfortunately, there happens more than people would imagine with regard to um nurses, social workers, physicians, midwives, etc. not understanding the capabilities of parents with disabilities. And, you know, the the complication of cancer being turned into the mix is of certainly a r a rare, more rare wrinkle. But you know, I I came to learn after all of this had transpired, you know, there was always that thought of how how could these people have been so ignorant, especially with somebody in the case of our home nurse who was in our apartment um time after time visiting with us, talking about these things with us. How could she have been one of the people who then turned around and made that referral? That that was astonishing, and I'm gonna say it hurt too, because that was a major betrayal for us. And you know, what I came to understand through my forgiveness process and through my through my research and training was that these are people who yes made some decisions that were questionable to be generous, but also they were a byproduct of a healthcare system that distorts the capabilities of people with disabilities on every level and at every turn. So that really kind of fed into my desire to say, wait a minute, yeah, we need to we need to hold people accountable if they make grossly wrong decisions, but we also need to look ahead and say, wait a minute, we need better training, we need collaborative processes that make health equity not just not just a box that you check, but actually a collaborative means of creating the best healthcare system for everyone. And there are real gaps in the market even today in those regards.

SPEAKER_02 10:42

I was just gonna ask you that. If we had to grade health equity, since you do a lot of work in it and you've lived it, if we had to grade health equity today and we had to say, okay, we're gonna grade it from A to F, A, of course, being the best, F being the worst, what grade would you give it?

SPEAKER_00 10:59

Honestly, a C or a C minus.

SPEAKER_02 11:01

A C or C minus. And why is that? What are the problems with health equity that still exist today? I mean, really a two-part question. I mean, I do hear, you know, when I work in as an insurance broker, I do work with uh health insurance companies, and I have seen them uh talk about and ask different like provider groups, do they have cultural training and different trainings to help uh people feel more inclusive and all the above? It's not really enforced, but it's like, hey, do you do this or not? So I I see some things coming on the horizon, but I'm not seeing anything with quote unquote teeth. The question is, what are the gaps today and where do you see uh various organizations addressing those gaps?

SPEAKER_00 11:45

Absolutely. So we don't have programs that have buy-in. And until we have buy-in, it doesn't matter. So let me let me give you a couple of statistics off the top of my head. People with disabilities, which comprise close to 30% of the of the adult population, 18 to 64, and of course more in the 65 plus category, um, have a series of health complaints beyond the general public. We're more likely to experience a number of chronic illnesses, have lower um perceived quality of life, uh, more pain, less access to you know, timely care, um, less access to devices that can actually, you know, that are accessible, you know, like if somebody is a wheelchair user and needs to have their weight taken, for instance. That's a real problem. Um, and and when I when I point out that our health outcomes are drastically worse than the general population, it is important to point out that this is after any claims of results that are directly tied to those disabilities are factored in. So these aren't just a natural byproduct of having a disability, these are systemic, social, technological barriers that are causing these health disparities. And one of the things that people don't often think about is despite the fact that we are, you know, like I said, 30% or so of the population, five percent of providers identify as having a disability. And if you think about it, in the broader health equity conversation, we've talked about how you know the BIPOC population or the LGBTQ plus population benefits from having providers who understand life from their perspective. Well, it's no different for people with disabilities. We need to have people in our corner who understand our struggle too. And it is vitally important to have nurses and social workers and doctors, etc. working alongside people who have different experiences than them. Because I am convinced if you have a colleague that you watch navigating this system, you're gonna treat your patients very differently when you run into a similar circumstance because you know better.

SPEAKER_02 14:26

So tell me this, given what you described, and I I I do think we have ways to go on that, back to the score of like a C minus. And I do hope we see better things and buy-in. I think that is a a key thing. But what what do you say someone, especially having lived through it yourself with uh you, your ex-wife, and and your daughter, and you talked about your experience there. But what does someone do? Let's say they find themselves in this situation. How can they better advocate for themselves in a system that they feel like it's working against them?

SPEAKER_00 14:57

First of all, don't go it alone. Um we have we have so many resources out there now, even if you're just joining a Facebook group of people who are in a similar boat that you are, you know, crowdsource information. If they're you know, they're gonna know where the resources are, they're gonna know where you know what you're going to want to avoid or where you're more likely to find what for lack of a better word, we can call affirming care. So I would say peer-to-peer networking is such a crucial part of finding equitable and useful care for yourself.

SPEAKER_02 15:44

Oh no, that's that's really awesome. So, so that's one way. So we were talking about Facebook group or peer-to-peer, because I do think, you know, you never know who might have heard or had an experience that can help you. Um, what if they're like in a hospital or they're in a situation? I mean, are their uh resources there or other nonprofits, or what can someone do if they just feel like, hey, I I just I'm kind of stuck here. How can they be their best advocate?

SPEAKER_00 16:10

So I think first of all, becoming health literate is critical. You don't have to have a college-level understanding of anatomy and physiology per se, but having a working knowledge of how the human body operates is huge. Um, if you have a rare urine diagnosed disorder or multiple, as some of us do, becoming an expert on that to the extent of your capability is huge. I, you know, I I feel like the people who thrive with some of these rare conditions, for instance like retinoblastoma or amorxanos in our cases, they um they they become familiar with the terminology, they become familiar with how the or with how the disease works. And understand that your your doctor, unless they are a specialist in this condition, they may be dealing with a with a situation that they may have spent, I don't know, 10 minutes on in medical school and haven't really thought about it since. Because where medical school is meant to be broad, it's not meant to be deep in the sense of handling any particular uh rare or complex condition. That's where we as patients or as loved ones really have to lean into that and say, okay, I'm gonna bring my subject matter expertise and my lived experience to the table and seek out providers who value that and we can create something synergistic in the process.

SPEAKER_02 17:54

You know, it's so true. I'm gonna get tell briefly, and I know you can probably relate to this, I have a slight retina condition as well. So I have uh have had for about 10 years I've been dealing with, and you know, I I really and I'm embarrassed to say this to be honest with you, but I don't think I'm alone when I say this. You know, I saw a great retina specialist, he was awesome, but I really struggled with his communication. And I just sat there, I'd walk in, and you know, I would listen to everything that he said. I never questioned anything. And, you know, I'd like to think I'm a smart person at the end of the day, but I just trusted, right? And he did nothing wrong, absolutely nothing wrong. But what I did are really three things wrong. One, I didn't do my own research back to your point, understand your body, understand your condition to ask different questions. And number two, just thinking he's great, he's awesome. It was a he in my case, and he was awesome, but he was not the best communicator for me because he just he was not always available to answer questions for me. And I really struggled with that. And number three, we forget our traditional healthcare system, right? You're they are dictated, they being the providers by that, and whether it's five minutes or seven minutes, in my case, that's all I have with that retina specialist, and that's it. So it took me five years back to my ownership of my own self here, but to to actually change and go to a retina specialist where who shows me scans of my eye, who sits with me, who formulates a plan or whatever. So, not to go on that tangent, but I I think it drives home a lot of the points that you mentioned. You know, we can't take, and again, 10 fingers pointing at me because I made a mistake. Don't wait five years to not know about your condition, ask questions. Wearing a white coat doesn't mean you're God. It means that it's a proactive discussion. And I feel like I talked to a lot of people that said, yeah, me too, man. I was kind of afraid to say anything and I knew they were in a hurry, but you know, and you put your needs on the back seat. And I don't, I think equity also is also you being fair and equitable to yourself. What do you think about that?

SPEAKER_00 19:57

I agree. Um, you know, there's a lot of advice out there about seeking out, you know, the top, the top specialist in your field for, you know, particular things. And that's not wrong, but it's incomplete. Um I feel like, you know, oftentimes there are times where you want to seek out the best at a in a particular field and where it is the right call. And there are other times, like you said, where maybe the maybe the credentials don't jump off the page, but that rapport is naturally there. And I'm gonna argue rapport is just as important as credentials.

SPEAKER_02 20:40

Amen. Yeah.

SPEAKER_00 20:42

And yeah and this is coming from, you know, I've I've seen some of the best in the world when it comes to different retinal things, uh, both for for myself and and for my kids with retinoblastoma. And we had doctors who were world renowned and were awesome. We had doctors who were world renowned and were like, huh? And we had one surgeon in Colorado who he's got a superstar retinoblastoma, but I put a lot of the credit for us having two kids who can drive and who have outcomes that were way better than expected. I put a lot of that credit on his shoulders because he worked with us, he was proactive, and he was phenomenal. So it's, you know, it's all of those things.

SPEAKER_02 21:35

Yeah, absolutely it is. Well, and I love, and then thank you for allowing me to share a little bit of that too. Because I do think if when you we, as I said to you earlier, we talk about stories, I think it kind of makes it applicable. Somebody said to me, you know, I love that because you know, me too, I thought I was the only one. Because we're not, and and we're all trying to figure this out together, especially when it comes to healthcare. And to your point, being healthcare literate, which is one of the main goals of this. Podcast is to help with that. But tell me about you. You've got a Pieces of Me, which is a nonprofit organization that you started. Tell me more about it and what's the mission?

SPEAKER_00 22:11

Yeah, so it started when I was coming out of a serious mental health crisis. And um I was meeting with my cousin over in Phoenix, talking about how you know we had gone through so much with our kids and with, you know, trying to find my own diagnosis. And then also her situation where she was a trained social worker who had a daughter with an unex unexpected limb difference. And that hospital in Phoenix had no clue where to send her, no clue what resources to point her toward. And she's like, wait a minute, I'm a social worker. I'm I'm no dummy. I'm I'm experiencing this. If this is if it's this bad for me, what's it like for anybody else who doesn't come in with that with that kind of privilege? And I said, okay, you know, Christy, you're right. And it's not just this particular situation. This transcends all kinds of different medical situations or disability situations. And let's let's create an organization that addresses this at the grassroots. So Pieces of Me has the mission of providing community education, so that's level one, innovative professional training, which is level two, and then connections to relevant resources, all of which break the stigma surrounding disability of all kinds. And so it's about almost creating a funnel of, hey, this is important. Then what do we do about it? And then where do we go to actually implement changes? And we spell pieces of me, P-E-A-C-E-S, originally to help people understand: hey, you're not broken. Your peace is going to come when you accept that you are who you're meant to be and go live your best life with, you know, by utilizing your gifts and talents. And we eventually came to realize that the other meaning of peace is, as we spell it, we hold that accessibility is a human right. We hold that the world has a lot of room for improvement, but we also hold that we're gonna get a lot more traction by meeting people where they are and calling them in rather than calling them out. So, to put it in perspective, if I had an opportunity to go back and, you know, 18 years later talk to the team that made that CPS referral, you know, doing it in grace and doing it in try to say, okay, help me understand from your point of view how we can make sure this never happens again, not how dare you, that was so evil. Because I think the former approach is what is what creates buy-in and really creates change.

SPEAKER_02 25:05

Absolutely. And I was gonna ask you about peace, and I love that. Yeah, peace is a me, P A C S. So I appreciate that. Now, one question. You mentioned the resources, the training, and all the above. Is this um for uh those struggling with a disability andor a provider community and or an organization looking to enhance their knowledge and embrace this change? Who's the target audience?

SPEAKER_00 25:31

So we say that we serve any individual or organization who wants to get better at creating authentic inclusion for people with disabilities. But when you break that down, yeah, we are we're building a peer-to-peer life virtual library. So if you want to know where to go to get a prosthetic or how to align with other family members or patients who are living with a similar situation, you know, we're working on that. But also, if you want to, if you're a healthcare provider and you want to know, okay, where can I find training? Where can I find, you know, resources, or let's say you're an architect, um, you know, where can I go to get a ramp built or braille put on my building? Um, we're we're connecting all of those docs because we feel like they all they all play off of one another.

SPEAKER_02 26:26

Yeah. Oh my God, that's so great. What we'll make sure and link to that. Um I know that we could talk about so many different things. The the golden nuggets and the realness of your story and your passion and heart really do come through. But as we kind of uh get to a close, I would just like to leave you the moment to share any final tips and thoughts that you would like to leave listeners with.

SPEAKER_00 26:51

So I'm gonna I'm gonna start off by mentioning a couple of statistics that I forgot to mention when you were asking about why I gave the healthcare a C or C minus. During COVID, we had documented cases of euthanasia happening, not just rations resource, actual euthanasia happening based off of uh disability status in the US. And we have facilities that I saw one study where well under 20% of facilities were fully physically accessible, and virtual care, believe it or not, is actually worse when it comes to the digital accessibility, even though it could be the gateway to creating a lot of these equitable solutions. I say all that to say we're in a real bind, but there is a real powerful road ahead. So for the providers, the clinicians, support staff out there, we can do so much better, and we can do it by working together to find solutions that are built on common ground and leverage the experience of every stakeholder. That was a passion of mine as I was working through my MHA over the last couple of years, is not only just finding patient-centric solutions, but finding holistic solutions that actually create equity. So if you're out there watching or listening and saying, hey, you know, is there a spot in pieces of me for me, even though I don't have a disability, the answer is absolutely yes. Please let's have a conversation. If you're living in a situation where you or your loved one is in a medically complex part of life, um, dealing with chronic pain, fatigue, mental health, whatever things I'm I'm quite familiar with myself, there is so much power in finding a deeper purpose for what you can do next and how you can leverage your gifts and talents. And I know it's it's hard. Um with my condition, I wake up with a dislocated hip or um a bone in my foot that's out of place or an inflamed hand all the time, and I never know what's what it's what it's gonna be from day to day. And it's hard. It's really, really hard. But one of the things that gives me hope is knowing that I have something I can work on that day that will that will benefit others and will bless others, and by extension, bless me, that helps me reframe that pain. Not that it magically goes away, but it it goes into a different box. So I would really encourage you if this if this is your life, see what you know, take take that next step to figuring out how you can get into a place where you're feeling like you're still valued and able to contribute because you are and you can.

SPEAKER_02 30:12

Well, thank you for that. I that is such powerful words. And I always say on this podcast, you never know where anyone is at on their healthcare journey. I know that that the your words of wisdom and and all that you're doing are going to benefit others. So, Daniel, thank you so much for being here. We'll again we'll link to your website if one anybody wants to reach out or learn more. I've been there on the website, it's a great source of information, easy to contact, all that good stuff. So thank you for your time today, your expertise in all that you're doing. Um, I know so many people uh will be blessed for it. So thank you.

SPEAKER_00 30:45

Thank you. It's been a real pleasure.

SPEAKER_02 30:48

I enjoyed having Daniel on the show. I appreciated him sharing his story and his comments about reframing the pain to work for the greater good. Such an inspirational story. Make sure and check out the show notes to learn more about pieces of me. In our next episode, we know that navigating the healthcare system is complicated for us, but it's even getting more complicated when navigating for your pets and getting the best care for them. So we're going to talk about how to help your pets live healthier lives with more tail wags and less guesswork. Dr. Kevin Thoman will be joining us. Dr. Kevin has over 40 years of veterinary practice and special interest in orthopedic and cancer care. He has devoted his professional life to helping pets live longer. Dr. Kevin takes great pride in being a healer and a teacher and would love to partner with you and the holistic care of your pet. Don't miss this episode. Until next time, get savvy.