Caregivers Without Barriers: Chanda’s Fight for Care Equity

What if the care system you need doesn’t exist yet? Chanda didn’t wait. 

In this episode, we speak with Chanda Hinton, founder of the Chanda Center for Health. After a childhood spinal cord injury and years of depending on medicines and medical care, Chanda found that daily movement, touch-based therapies, and a team that talks to each other worked to help her overcome challenges brought on by medicine. 

Then she pushed further—she helped pass a first-of-its-kind law in Colorado  and built a disability-competent clinic where primary care, PT, behavioral health, and integrative services live under one roof.

We walk through the turning points: hitting failure-to-thrive at 59 pounds, swapping pills for proactive care, and proving cost savings by reducing 911 calls and ER visits. Chanda explains why caregiver choice matters as much as any therapy, how rotating schedules protect everyone from burnout, and why even toileting can be a place for dignity and laughter. 

You’ll learn how the Chanda Center addresses real barriers providers face, how to create caregiver networks that flex with life, and how disability and dementia communities can join forces to push healthcare toward prevention and collaboration. It’s a story about agency and design: when care aligns with the person, everything works better—body, budget, and spirit.

If this conversation sparked ideas, share it with your care circle. Follow and subscribe for more candid, solutions-focused episodes, and leave a review to help other caregivers find us. Your story could be the seed for the next big change.

For more information about the Chanda Center, visit ChandaCenter.org. 

Exec. Producer/Host: J Smiles

Producer: Mia Hall 

Editor: Annelise Udoye

Chapters

• 0:00 Setting The Stage: Different Needs
• 1:50 Show Open And Guest Intro
• 3:12 Shanda’s Injury And Daily Life
• 8:10 Care Models And The Power Of Choice
• 13:20 Rotation, Burnout, And Routine
• 16:40 Bridging Disability And Dementia Communities
• 19:15 Opioids, Crisis, And A Turning Point
• 24:00 Movement Over Medication
• 27:20 From Personal Fix To Public Policy
• 30:45 Passing A First-Of-Its-Kind Law
• 35:10 Why Providers Weren’t Signing Up
• 38:10 Building The Chanda Center Model
• 42:10 Collaboration, Medicaid, And Outcomes
• 46:10 Humor, Toileting, And Humanity
• 49:30 What Great Caregivers Do
• 52:15 Snuggle Up: Key Takeaways And CTA

Transcript

SPEAKER_00: 0:00

We're all very different. We're all on our different spectrums of disability diagnosis. And so therefore, we've got to we've got to do the one that fits with us best. And especially, you know, if you're having memory loss, it does. It has to also work for the family and the caregivers. I always tell people. It was such an interesting aha moment because I used the medical model to intervene on saving my life when I was shy. But the overutilization of the medical model resulted in me having to then use the medical model to then save my life again. So I was like, this is just like really bizarre. Some of us would hit moments in our lives where we just realize, like, wow, we could just come upon something. And if I don't do something or I don't say something, nothing's gonna get done. And again, um, it doesn't mean that it's gonna be successful, but I wanted to do it anyway.

SPEAKER_02: 1:00

Parenting up Caregiving Adventures with comedian Jace Mouse is the intense journey of unexpectedly being fully responsible for my mama. For over a decade, I've been chipping away at the unknown, advocating for her, and pushing Alzheimer's awareness on anyone in anything with a heartbeat. That's why I thought it's comedy. Don't be ready for the joke. Caregiver newbie, OG, and village members just willing to prop up a caregiver. You are in the right place.

SPEAKER_01: 1:40

Hi, this is Z. I hope you enjoy my daughter's podcast. Is that okay?

SPEAKER_02: 1:52

Today's supporter shout out comes from YouTube. Johnnyque Unique 8361 gave a very insightful response to one of my clips asking, Who's in your emergency contact list? What's your village, village? And she says, I never saw one of them whilst I was on life support. But my girls from Europe, Australia, and the Philippines, they all showed up. My family are not my choice, but my best things are. I know what you're talking about, girl. That's all I'm gonna say on that. I know what you're talking about. Now, if you would like to be the recipient of a supporter shout out, please leave us a review on Apple Podcasts, YouTube, or Instagram. We are parenting up everywhere. Today's episode, Caregivers Without Barriers, Chanda's fight for care equity. Parenting up family. I know y'all are probably sick of me saying how excited I am about this new guest. But this time, we have a first, an initial impression. We have never had anyone like this before. Ever. Five plus years, six seasons, and we're having our first carie interview. Do you hear what I'm saying? She is the recipient of what caregivers do. She's about to tell us about how she became a Carrie who helps the people who probably don't help so much. We ain't gonna name their names, but we're gonna say that everybody is not good at this stuff. And she has taken advocacy to a new level in the stratosphere. So without further ado, it's my girl Shanda.

SPEAKER_00: 4:03

How are you doing, honey? Oh, thank you so much for having me. I'm so excited to be the first Carrie on the show. And um, I think this is gonna be a wonderful conversation.

SPEAKER_02: 4:13

Agreed. Now, the first thing I I have a bit of a bone to pick, it's not really you, but it's your environment. You're in Colorado, I'm in Georgia, it's the fall winter, and it's colder where I am than where you are. And I just gotta say, I'm not I'm not in love with it.

SPEAKER_00: 4:32

I know the cold weather's horrible. It's like I mean, I love being all cozy and warm inside, and at the same time, it's just so exhausting. So sorry I took it for I took your warmth. Thank you.

SPEAKER_02: 4:44

Well, if you know, I do like you, so if somebody has to have it, it's better to be a person like you. Yeah, yeah. Now, primarily our listenership, viewership have uh caries that are in the space of dementia. As I'm sure everybody can see and hear, cognitive decline is not what's happening here. So I don't want anybody to think that you found um the hope serum for dementia, and they're like, oh my gosh, she looks great, she's talking so clear, she's laughing, her eyes are bright and bushy. How the hell does she have dementia? Well, she doesn't. But without caregivers, her life would not run well. So let us know how you came to need caregivers.

SPEAKER_00: 5:40

Absolutely. So when I was nine years old, I was accidentally shot in the back of the neck. Um, it severed my spinal cord between the C5, C6 um cervical part of my spine. And so I from nine until I'm in my 40s now. And so from that time, I have relied on caregivers all the way from family members to then transitioning away from family into um caregivers through various um particular programs, whether that be home health care agencies, whether that be through government programs that allow you to kind of facilitate that. So my experience of um the caregive role and knowing that there's been a variety of ways in which I've um been able to be a recipient of that has been pretty, pretty vast, right? And so I have so much empathy and so much um knowledge about how that relationship, um how those relationships work and how oftentimes they don't work. And um, but also as an individual, um, I function. So with my paralysis, I function from um no movement, no mobility from my armpits down. So I'm in a power wheelchair, uh, function daily by using an adaptive vehicle so I can drive. Um, I have a service dog, but he's retired, so I'm kind of like if I drop something, I'm like, gotta I'll I just have to wait, you know. Like he just stares at me, which has been a really fun uh recent journey for the two of us. And so um, so you know, that's where that's where it all began for me was my injury, and now being in in my 40s, um, there's just been so much that I know that you and I are gonna get into. So yeah.

SPEAKER_02: 7:30

Yeah, now listen here, Parenting Up Community. I we came to know Chanda with the Chanda Center, and if you've heard of it and you recognize what a badass we have as a guest today. Before we get into everything that the Chanda Center um uses as services and how she services a community even broader than what her needs are, I want to stick to the as your space and as a career for a moment. You have been uh we're talking like maybe three decades. And so, as you mentioned, there's been a vast change, maybe in what your needs are. There's been a vast change in technology. When you were 10, these power wheelchairs didn't exist at all. Not like they are now.

SPEAKER_00: 8:29

Oh, yeah, not like they are now. Like the one I one I was first in, like I swe I mean it was, yeah, it was definitely not as advanced as it is today.

SPEAKER_02: 8:38

So what I want to uh find out from you is as a career, overall have you had a preference to family versus in-home help versus you know what, this might be better if I'm at uh I go to a center where they have really trained professionals to manage whatever it is I need.

SPEAKER_00: 9:07

Yes. Um, so yeah, and I want to I want to kind of preface with the lens that um I'm definitely um, as we mentioned, I'm I'm still young, I'm not going through levels of dementia, right? So that I just want to note that that my experience may come across a little bit different, but I know that there will be points of um relatability that we can have. And so when you when you ask that question, the first thing that popped in my mind, which usually when that first comes to my mind, I'm like, that's the answer. And so for me, it's it's not that one or the other has been better, but rather having the network of all of them and having choice is truly what I've enjoyed. So for example, um, you know, being with my mom when I was younger, that's all that I knew, right? That's all that she knew. She she was gonna take care of her little baby, right? Like I mean, even till up to 18. But then I got to the point where I needed independence, right? So I wanted to move away from that care that was directly with my family. And so at that time, then I started using home home health care agencies. That experience wasn't so great for me. That experience was if you can't find a home health care agency that can have consistent caregivers where rollover's not a big deal, that um, you know, that they're gonna show up on time. They're actually gonna show up on time and not be high or trashed or something in some kind like okay, the same happens in Georgia. Okay, well, I think it happens all over the world. So you're like, ooh, it happens in Georgia too. So it's like it's so for me, um that model wasn't my favorite, but I learned a lot in that model because then I was empowered to really jump into a different model where I now have the opportunity to choose my own caregivers. And so, for example, in the state of Colorado, if there is a family member that would be taking care of someone such as myself or even somebody with severe dementia or memory loss, there is a program in which the families can choose the caregivers. So it's they can use their Medicaid dollars to say, you know what, I I can actually pay a family member to take care of this family member. Or if I already have a full-time job and caregiving is not my AMO, I can hire someone that I trust to come in and use those Medicaid dollars that would typically go to a home health care agency, but directly into the pockets of the people that you trust or a family member that's already doing the work that had to potentially stop a job to do it, and they're gonna get paid to do it. So for me, really, um, but even as of today, with my caregive, like with me living in that um direct that uh care, uh care directness, you know, direct care of like I get to choose my own caregivers, believe me, they still there are still times where I need a break from them. And so when my mom comes into town, so when my mom comes into town, I'm all like, PTO, you got the night off. Woo-hoo. And then like they're they're feeling the same way, right? They're like, thank God, she's giving me the night off, right? Because we intimately connect every single day of our lives. And so I hope that kind of answers the question. It's it's like yes, it does. Yeah, and I just don't think that there's one right way, too, because I feel as though we're all very different, we're all on our different spectrums of of disability diagnosis, and so therefore we've got to we've got to do the one that fits with us best. And especially, you know, if you're having memory loss, it does, it has to also work for the family and the caregivers.

SPEAKER_02: 13:06

Correct. Correct. There's so much overlap in what you just said, at least what I've experienced as being my mom's caregiver and what I've witnessed in other people, which is I don't give a freak how much you like somebody. There's a point when 24 hours a day, two or three days, two or three weeks in a row, and you you feel like the walls are closing in. And just to have interaction with another person, another human. And it doesn't mean that the routine changes, but if the players change, it can give a little bit of like an energetic boost to the whole team. That's what I think.

SPEAKER_00: 13:50

Absolutely. And I think too, what's really important to be careful is that so with like my caregiving schedule, I have one that does five days and then one that does two days because that person that does my five days, I'm not doing seven days. Like, so you've got to get really creative in that person that does those two days. I don't want them to do seven days. And so, but it gives that that that nice breakup of change of, you know, you do the same routine, but it's a little different. And that little difference in your routine makes it feel a lot lighter for the caregiver and the caregivee because the mundaness of it can get to a point. I will be honest, it sometimes it can get dark when it's too mundane and you're not having the ability to be um flexible um with that schedule and changing it up a little bit.

SPEAKER_02: 14:43

So totally that that there's another bit of the overlap. And when we had our discovery call, I remember being so excited at the notion of we could start to blend care for dementia and care for those with physical disabilities because the caregivers are operating in much the same sphere. And if those two communities were to unite and have uh a massive march on capital in in uh in DC, how much uh louder would our collective voices be? And so we'll get uh more into that in a second. So you are uh nationally and internationally known as the hardest working woman in disability advocacy. So please share the Shanda Center is a blueprint for what can be done when a person decides that's a fucking enough. Please share the services of the Shand Center. Okay, wait, wait. I want to say a little bit my own way so everybody listen. She started this whole thing because she couldn't find what she needed. And that is such a parenting up, caregiving, cary uh uh focus for the parenting up community is what you need may not exist. Perhaps you have to create it or you have to find out if it exists in another state, maybe another country, maybe just another neighborhood. But just because you can't find it doesn't mean it's a not a worthy pursuit. So often I believe people, oh man, well, I guess this is the best I can do because I haven't seen anything else. I was mesmerized, Janda, by your ability to say, I'm advocating for me and anyone, even closely related to my um physical limitations. So tell us about that.

SPEAKER_00: 17:11

Yeah, so when you know, I mentioned I was injured at nine, and uh when I turned 21, I started having severe chronic pain. Like, granted, I had already had a lot of secondary conditions, which they identify as being um secondary conditions are what comes from your primary condition. So let's talk about like when you have a spinal cord injury, there can be bladder, bowel, all kinds of muscle atrophy, you name it. So think about your um your your dementia or memory loss folks, where that's their primary, but there's so many secondary things that are happening with that, right?

SPEAKER_02: 17:45

The way that the the typical continence is huge.

SPEAKER_00: 17:50

All those, yes. And so, and oftentimes some of those, um, our current model of healthcare wants to address most of those with medication. And so that's what I did from nine until 21. And then I turned 21, started having chronic pain, and the discussion was like, oh yeah, that's another secondary condition, and um provided me an opioid, and that was right at the peak of the opioid epidemic in 2003. And so I got extremely sick, and I always tell people it was such an interesting aha moment because I used the medical model to intervene on saving my life when I was shot, but the overutilization of the medical model resulted in me having to then use the medical model to then save my life again. So I was like, this is just like really bizarre. But after they then intervened, because I got so sick I was down to 59 pounds. I had to.

SPEAKER_02: 18:47

Hold on, hold on, hold on, Shanda. I know this is your story and you've told it many times, but it but it it may be new to many in the parenting up community. So you just hit upon two things. First, you got down to 59 pounds as an adult. Mm-hmm. 21. That is scary. Very scary. Second, you mentioned the opioids making you sick, and because you live in Colorado, I don't want people to think, oh, she was just high, she just got too high. No, she didn't just get too high, at least not this time. It wasn't even legal then. But so if you can share what the sickness was that really pushed you to say, okay, this medication, this feeling is not going to be able to last.

SPEAKER_00: 19:43

Well, yeah, I I think that it all of that cumulation of utilizing all of those medicines and not moving my body was what was what was the issue. Because in medicine, we're not supposed to mask the issue, we're supposed to address the issue. We all know this. It is the most simplest way of health, human, and healing. And for some reason, it is a constant complex in our healthcare community. And it's like you don't throw pills at something and think that it's going to go away. It's just not. It's either going to help a little bit, it could get um better, or it could get um actually worse, which cost more medication to address it. And so the the symptoms of my chronic pain plus all those others and just overutilization of medication is what caused me to finally have failure to thrive because it's like your body after that length of time, it there's no vitality in that. There's no, there's no like I'm tired all the time, I'm lethargic, I'm not like I'm not aware, I'm not ambitious, I can't even go to work, I can't, I can't um socialize, right? Just because I'm fighting my everyday symptoms. And so then when I got sick and then I um, you know, I obviously needed medical intervention or else I was gonna die. And so, and some of the other things was overutilizing like 911 and going to the ER and all of these things that are just so costly. And so when I was finally hospitalized when I was 59 pounds, because of that, um when they they started feeding me intervenously, they put a feeding tube in. I don't even remember probably the first week that I was there. So they saved my life. And I think this is the part where um we stepped back a little bit and we said, guess what? Let's let's have a conversation about how are we gonna redefine how we're gonna approach Chanda's healthcare. And so that was with my mom and my sister. My sister had been studying yoga for many years, and she's like, Why aren't we utilizing the things that Chanda's body before she was nine, she would move that body? Should we get blood circulate but blood circulation and lymphatic drainage? Like our bodies are are essential to have movement to them. Now, if we can't do that on our own, anyone, right? Spinal cord, um, memory loss, you know, uh dementia, any of that, we need the ability to have someone to help us move. I can't go to the gym, I can't work out alone. So there were the recommendations like, hey, go start some acupuncture massage, chiropractic, physical therapy. I went and did that, and I tell you, and I've told everyone that the reason we're having this conversation today is because it saved my life. And so um that was the spark of that saving my life, but then it created a spark of like kind of creating a path of two separate places that we'll probably go into when it's like legislative changes, systemic changes, because knowing systemically, if we change the issue, we're going to create more sustainability for a population that is needed, but then also creating a nonprofit to address some of the issues now, whereas systemic change could take years.

SPEAKER_02: 23:11

Generations, yes, especially if the generation doesn't want it to change, so we're not getting into that. But um you were in listen again, badass. You're in your 20s. You have just fought uh courageously for the second time to stabilize your life. What occurred, or what do you think thrust you into this role of advocacy? Because figuring out what worked for you, you could just kind of tell a few of your friends who may that you may have met along the way in various hospitals and treatments, hey guys, I think you should do acupuncture and dah dah da. But what were you have you always been activist and community-oriented, or did something occur in your 20s?

SPEAKER_00: 24:07

Yeah, the the moment of finding a new and more healthier way of living, because after I did that and it saved my life, like I was like my my energy level increased, I had more clarity because I had less medications. I was like, wow, like like I so I had so much more health. And it just again goes back to when you feel healthy, you can actually do something. And so when you have um, like I I keep telling people there was almost this moment where it's like the the mental clarity was so strong and so um, I think motivated that I don't think that I had a choice at that point. Like I just started doing because I was I was passionate about what saved my life. I was passionate about researching whether it was just my story and finding out that it wasn't. Um, I was passionate about uh calling up Medicaid and saying, you know, I've just been saving you a lot of money because I'm doing these other services. And then finding out that it wasn't my story and that there were other people struggling with it, and the fact that nothing was being done about it, like it just lit a fire under my ass. And I was just like so passionate, and I was like, this has to change. And I but I think that that's um, you know, some of us will hit moments in our lives where we'll we just realize like, wow, we have just come upon something, and if I don't do something or I don't say something, nothing's gonna get done. And again, um it doesn't mean that it's gonna be successful, but I wanted to do it anyways, and so I was just like, let's do it.

SPEAKER_02: 25:55

That is such an amazing point. That point of it doesn't mean it's gonna be successful, it might not catch fire, you may not do it for long, but if there's this push of intuition where you're passionate about it and there's a fire in your belly, the courage to say, Well, I'm gonna try and we will see.

SPEAKER_00: 26:17

Yeah. I kind of felt like there was almost like I had a choice, but I almost didn't have a choice because I was so on fire that it was almost like the fire was leading me down a path that I almost was not, and I just like it, it was going, right? And I'm like, I'm like, I'm just gonna keep going. And I know that we all know these moments because we'll feel them in life, you know what I mean? And and it just so happens that things start following and falling in the right place, and you're like, okay, this is exactly where I'm supposed to be, so I'm gonna keep going, you know. And so I think that that helped as well. Um, and just knowing that I had to be very strategic and articulate in the way that I spoke to people about it, because you know, back in 90, you know, back in I mean 91 when I was first injured, but even in when I brought this forward in 2003, 2005, like people still talked about integrative healthcare and integrative medicine as like woo-woo kind of stuff. And it's like, or or that it's spa. And I'm like, no, this this is what keep me, this is what's keeping me alive. So I want to legitimize it by really being able to articulate and explain to people how it works, why it works, and why it's important, and show the cost effectiveness and the improved quality of life. And there's a lot of that that is um really critical to move the needle on it.

SPEAKER_02: 27:48

Yep. And that is the same thing that we see in the dementia community in terms of what movement will do. So there may be years where um a person can still walk or use their arms, and then it starts to slow down. So maybe they become a fall risk. And I've had this on my own team where certain caregivers become very hesitant to walk my mom or to try to exercise her arms because they don't know if she's going to get lightheaded or get loopy, or will she fall, or will she get dizzy? So then they choose to just let her sit in the chair. Now, those caregivers don't last long because that's not the protocol. The protocol is to get her to move, and if not, then she has a recliner, recline the chair all the way back, and then you lift her leg. And because we, the her exercise therapist, have shown us things that we can do, and it makes a difference in her energy level, if her bowels move at all. I know, I'm gonna tell you, when I come home from travel and they tell me, Oh, you know, uh, Zeti hasn't had a bowel movement in three or four days. The first thing I say was, who was moving her? Well, who was not moving her? Because if she's eating the same amount of food and nothing's coming out, nothing's coming out. That doesn't, that's physics, that's basic physics. You're supposed to just push it right on out. So um that is something too about uh the overlap there. You have uh championed these causes so much that you now have a health and wellness center dedicated to people with uh injuries like yours, and then you expanded it to more um I'm just gonna say central nervous system, spinal things, and and we'll get into that. And you also have had legislation passed that changed the game. And what I want to stress to everyone who can hear or see this is she didn't change a law, she made a law. Do you know how hard it is where there is like no law at all dealing with a particular uh point of view, a community, or an issue, and you have the HutspA and the wherewithal to make a law from scratch. So which one would you prefer to talk about first, Chanda? The law or the center? But we get into both of them.

SPEAKER_00: 30:35

Yeah, well, I'd say the I'd say legislation and the law because that that is really what sparked um the center as well. You know what I mean? Because I think that, yeah, so let's start there. So um when when I had mentioned earlier that the integrative therapies just completely changed my life, um, I had mentioned that I called up my my Medicaid, right? And so I just said, hey, I've been you know saving lots of money. If you look at my claims, you'll see that I'm not costing you as much because I'm not going to the ER, the ER to, you know, do a ton of tests. I'm not calling 911 because I feel like I'm dying every day, but rather um I'm doing these more preventative services that are very cost effective. And I'm just curious, like, how can I get those covered? How can I swap out these other things for good things? And the lady's like, oh, we just don't cover that. And I said, Okay. And I said, Well, is it like again, I'm in my 20s, so I'm like, well, let me talk to your supervisor. And she was so she was so adorable because she even laughed and she was just like, No, it's a legislative change that you have to do. Our legislative body here in the state of Colorado is what determines whether what we cover. And so that was it. The light bulb, and I um had a very dear friend that also ran a nonprofit, and she knew some folks in the lobby um community that gave pro bono lobby um kind of support to me because the center had not been open. Um it was just like we were just starting to raise money, we were just starting to get people connected to services through our donor dollars. There wasn't like a brick and mortar yet. Um, so I went through that process, but I strategically um went through the process by making sure that the consumers were driving the legislation. So I didn't want the providers to be the one driving it because I didn't want our legislative body to, you know, have any level of confusion that this was just another way for providers to make money, which again, Medicaid doesn't make a lot of money for folks, but still I wanted to avoid that. And so um, we as consumers with disabilities went down there and, you know, I got a Senate and a House sponsor, and we presented it, we testified in front of our legislative body, and we passed the bill. And basically we just said, like, at least do it as a pilot, do it for the Denver metro area for spinal cord injury. Let us prove to you that it's cost effective and it's gonna improve people's lives. And so they passed it. And I would say that most people that were on the legislative body, they use these services too. And so here we are today, you know, that happened in 2009, um, 2021. We renewed the waiver, but we expanded it to be um beyond spinal cord injury. So it's brain injury, MS, CP, spina bifida, and a lot of other gray areas, right? And so we plan to keep expanding that across the board. So it's just again, not isolated those to those um diagnoses, because we believe this is the model that everybody should be getting because of how cost-effective it is. And so we just have to take baby steps because you know it's the first of its kind, and we often are a bit surprised that we're not seeing more states doing it. Yes, absolutely.

SPEAKER_02: 34:10

The I love the notion of we're just swapping two things out. Like if I if I was going to the ER 10 times a month, and now I'm going to the chiropractor five, and I'm going to acupuncture five, switch it out because I'm doing better, and you were having to pay anyway. And then further, the ER should be for life-saving therapies. Like the first your first injury when you were shot. That's where the ER is for. Somebody's in a car accident. We need the ER right then.

SPEAKER_00: 34:52

Catastrophic, catastrophic or yes, right?

SPEAKER_02: 34:56

But we in the uh dementia community overutilize the ER as well. And it is it is such of a burden to the ER system because since my mother can't tell me why she fell or why her eyes aren't blinking, she can't say, I have a headache or my stomach hurts or my knee hurts. So if she isn't responding in a way that I'm familiar with, I just go to the ER. I'm like, well, shit, I don't want to take a chance. I don't know what the hell is going on. Usually, it's nothing. Like in 14 years, I know we've been to the ER more than a hundred times. Three times has been something ER-worthy. Everything else we could await it or whatever. But it's that fear for us in the dementia community that what if this is something that is more? So that is another area of uh the overlap there. Now, I gotta say this, Chanda. You went through this legislative passing process like it was a cake bacon recipe. And I know it was more, it was harder and more complicated than that. Can you just give us an idea of from the time use they said you have to change that's a legislative deal? You got that from medic from the uh from the government from the uh medical health system. How long was it? Was it a year? Was it five years about from until that first legislation passed?

SPEAKER_00: 36:30

Yeah, yeah. So we presented it the first time in 2008, and then we got it passed in 2009. And I do believe that we would have gotten it passed in 2008, but there was um because we could have amended some language that would have absolutely made it pass, but we're like, no, let's just go back into the next session and we'll do it then. And so um, it took two years, and um just because the first year it didn't go through because of just semantics around language. And um, but I, you know, one of the things I even mentioned to you, I I always tell people every day, like, if I can pass legislation, you could pass legislation. Because I had no, like I learned, I learned quick and I was a fast learner, and good thing I was doing my integrative therapies because I was on top of it. I wasn't foggy, I was like ready to go, I had lots of energy, but I I so I learned quick yet. I quickly I learned about what the legislative process looks like in my state. You know, I made sure that I really um went to my sponsors, the two sponsors in the House and the Senate. I worked really close with them on drafting the bill and making sure that the bill really articulated what it was that we needed and that they were able to then articulate it when they presented it, and then we would come and testify. And I I just think that, you know, it it sounds complex and and maybe honestly, I don't know. Maybe we got lucky, maybe maybe divine into my divine intervention was like on our side. I don't know, but it's like I still think that there's so much fear around us, and we all know this in life. Like, we often don't do the things that we fear that we are not gonna be good at, and oftentimes um I I didn't have fear around it. I just knew that it was the appropriate step. And so I was like, let's go, you know what I mean? And so I think that maybe not overthinking it and just being open-minded was probably where I landed to get to there. And we have a we have a playbook. We we have always made it available because I mean you can Google and figure out like within in this state, how do you, how would you, how what would go, what are the steps of passing legislation? Anybody can get that. In terms of strategy, we really have the playbook on the strategy, right? And so I think that um uh it was definitely a fun time. And I think that legislation, I I understand it more now. And then we have a really we have good um advocate organizations that lobby and um advocate for uh disability rights things um throughout the entire state. That if I need to show up at the Capitol and represent them, it's just that I have really focused on the healthcare component of it, meaning the delivery of proactive and preventative health care. So I really stay close and inside that lens just because it is a really broad, there's a lot of lobbying and a lot of things that we need to change about healthcare when it comes to um, you know, what disability care, which I think is, which is again across the board, elder, elderly, disabled, like um oftentimes people want to separate those two populations. And I think the the more that we immerse ourselves together, the more that we have success to some capacity when it comes to the physical barriers that still exist in the healthcare system. So, um, but yeah, the legislative part was was fun.

SPEAKER_02: 39:58

Yes. I mean, I I'm mesmerized by it. So I hope there at some point there's a short story or a documentary or something. I'm coming to the opening, or I'll I'll get there to see the viewing. I so grabbed right on during our initial conversation around this idea of seniors and dementia and the care that is provided also for those in a disabled community because when it boils down to it, both communities have reduced abilities. Period. Across the board. There are things that must be done for her in order for her to thrive or just stay alive. Even though if it's a day where she's not thriving, we she still needs the assistance of someone else. So I I think we we won't be able to uh harp on that enough. I don't, I don't believe. Now, the Chanda Center, people are coming in there and you're changing lives. How is it running that thing, being an advocate, being a carie? How the hell do you do it?

SPEAKER_00: 41:21

Yeah, I ask myself that question a lot. So, so I I I've slowed down in my 40s, I will say, because as a quad, I think that I pushed, I pushed hard in my 20s and my 30s, and I'm glad that I did because I created something that I feel is very valuable to our community, and now I'm at the point where it's like I can't push that hard anymore. But all that work that I did, you know, the for two decades is that um, you know, it really set up for success to have people that I can trust that are operating the clinic. And um, I'm able to do, you know, I'm able to focus focus on podcasts and traveling and speaking and um raising money and doing the legislative stuff. And so I've really narrowed my scope of um what I'm capable of doing at my age. And so um here at the Chanda Center, when we opened it in to kind of back up a little bit, we became what after we passed legislation, and now Colorado was saying, okay, we'll fund acupuncture massage and chiropractic for all these disabilities. We found that providers weren't signing up. And so I went back to our board of directors and I'm like, wow, I mean, this legislation was so awesome, but no, no providers are signing up. And that's mostly because they were scared of disability. Like you, like you're not gonna see a bunch of massage therapists that, you know, they either want they want privates where they're making a lot of money, they want to, if you if you wield into, you know, a chain that's a massage therapy or acupuncture kind of chain, if I ever wield into one of those places, I cannot even imagine the looks that I would get. Like, how the hell are we gonna get you out of your wheelchair and all those sorts of things? And those are just not feelings that I want to have when I'm just trying to show up to take care of myself. And so I went to our board and I'm just like, I think that we need to become a provider. I think that we as a provider are going to not only have we passed the bill, but I think that we could create a really good um therapeutic home where these services could not only live under one roof, but also add on other services. So today, when you come to the Chanda Center, it's you know, it's so disability competent, it's accessible, it's therapeutic, it's trauma-informed, and you can get acupuncture, massage, chiropractic, physical therapy, care coordination, behavioral health, and primary care, all under one roof, all covered by Medicaid, and those providers collaborate with each other. So on the basis of the end user. So if I'm having a bad day and I'm in a lot of pain, my massage therapist is going to talk to my my acupuncturist for me. So I don't have to keep repeating my story over and over in that same day. And if I'm having a good day, I'll share it twice if I need to. But there's a lot of collaboration that occurs, or you know, primary care might be like, oh my goodness, I'm dealing in, you know, I've got we've got an individual, they they're having really bad back pain. You know what? We're gonna let's let's let's talk with the team. Let's figure out how you can get some more treatments of massage and acupuncture to at least maybe upfront some service to get it low. So it's just amazing to see all of these options and collaboration and healthcare. And again, this model is not supposed to be just for disability. This is supposed to be for everyone in the world because this is how we sustain wellness and remain vibrant and main remain in our communities and remain employed. Yes.

SPEAKER_02: 45:15

Um the collaboration of our communities and the connectedness so that they're you know they're they're millions, but if we combine, then the the cloud, so to speak, or the sun's rays that we are emitting will be uh multiplied that much more. And so I'm excited for us to continue this conversation. I am so excited to have met you.

SPEAKER_00: 45:43

And likewise, I thought when I first met, I was like, I'm so excited I met you.

SPEAKER_02: 45:49

Yeah, because you're just such a whippersnapper, you're such a fire starter. Like every step along the way, they either said no or said, I don't know. And then you said, Okay, well, then I'll go make it. You know, the fact that providers were signing up, and then you said, Well, then we'll be provided. Like, you just won't stop. And that is an amazing uh dynamic, and that's a point of view that I hope everyone who is able to watch andor listen to this episode takes a little bit of that for themselves, a bit of ownership. Now, you may or may not be Chanda, because I do believe she is a little bit supernatural. She's not going to agree with me, but this is I'm I'm on the mic right now, so I get to say it. But there is something likely that all of us can add to the community because we see a gap. That's the one thing about this, is each of us are limited by different things. So even if you might have the same diagnosis, the way it presents for my mom as Alzheimer's, it's not like it presents for anyone else. So there will be gaps and needs that I will see that other caregivers may not see. And to your point, if I don't say something or do something, then it might not get done. It may not get done. And I would rather not have that weight on my shoulders, you know, um, if I could help it. So before we um uh put a put a so I I don't even want to stop talking, but before we put a a short end on this particular conversation, we are all about humor and levity here at the parenting up podcast. So what are you comfortable sharing where you're a caregiver, or it might have been you, the career, where it was just holy smoly shit. No one would believe this. This is hilarious. Now, maybe it was uncomfortable in the moment, but looking back on it, it is giving you hours of laughter.

SPEAKER_00: 48:05

Yeah, so I thought about this because when we did our pre-call, I was kind of like, there's so many, honestly. There's so many of them because it's just like again, if you can't, if you can't laugh at life, then what, right? And so um for me, I think what has been the most consistent, you know, funny component, um, and it's happened all the way from the time when I lived with my mom to to today, to where the amount of serious conversations that I have with my caregivers while I'm taking a shit in the bathroom on my on my commode, I'm just like, oh my god, and and I'm naked because I do it naked. And so it's just like, but we just we just act like it's just so normal, and it's been that way my whole life. And I'm just like, we would like, I'm like, my mom, and we're so comfortable. Like I remember my mom being in there with her coffee leaning against the door, my sister would be sitting on the counter, and I'm just like, this is getting out of control. Like, can I and at what point I'm just like, I need some privacy, right? But then, like, if you should just I mean, we I mean, we'll get like me and my caregivers now, like we'll get intense conversations going. And it's like, oh wait, uh, okay, let's now let's do this thing. I'm sure that I've I I can guarantee there are so many other caregivers that can relate to that moment with the person they're caring for that it's it's the part of just life, it's part of life, yes, and yet you still, you know, you you just have to live life. And I think it's hilarious because um it continues to this day. And that's right.

SPEAKER_02: 49:51

I do believe the toilet, uh, I will say that I think toileting does offer an abundance of opportunities for laughter. I mean, one way or another. Um, and that also that that happens a bunch. Uh you know what I can catch with my mom too, and I can kind of tell the caregivers that's not they're not gonna last long by by the point you just made. They're a lot more timid about being near or around her while she's on the toilet. And I've actually had a few of them say, Well, you know, I want to give her some privacy. I'm like, shit, I'm not paying you for privacy. I need you to get up in there and watch her or talk to her, play some music, dance, read a magazine. I don't care if she don't know what the hell you're talking about. You just read it to have, you know, your maybe your voice will feel like a nursery rhyme or it's like sing songgy. What do you mean you're giving her privacy? Privacy is over. Privacy was over as soon as she got diagnosed, honey. I hope she had privacy before now.

SPEAKER_00: 50:54

Yeah, because like you said, she does she doesn't even like your concept of privacy is not what she understands. Like, so you've got to be there with her. Like it so it's it's interesting, and you know, and I think that's a that's really great for caregivers to constantly, you know, be, you know, not not to their detriment or their fault, but like they also I I feel like they just need some more training sometimes. I just feel as though um some will really get it and they will completely kick ass at it. And other ones, I'm just like, how does this how how how is this happening right now that you and so it's it's very and I have had the longest story of the most craziest caregivers and some of the most amazing caregivers. And I I also will leave with this one note I think that whenever caregivees have the chance to acknowledge their caregivers, it's so essential. I um I do my best that if I, you know, have to speak somewhere in a caregivers with me, I will call it out when I'm up on stage, just so you all know I'm here because of a caregiver. And the only reason why I'm here. And I think that oftentimes we forget about our caregivers. And I I think and knowing that memory loss and dementia, they're not gonna be the ones that are gonna be able to do that. You know, maybe if there's moments of when they're you know in the earlier parts of it, they'll they'll thank you. But you know, you know your families enough. But if you're still, if you're still coherent to some degree, um, I just think that in the world we we need to be recognizing and honoring them a bit more. So I wanted to I wanted to end with that note.

SPEAKER_02: 52:40

Oh, I love that. That is so amazing. Um all right. So now you just sparked. This is my this is my last comment. This okay, it was supposed to be my last comment was supposed to be three comments ago, but whatever. So you look, you are um activating my curiosity. As a carie, is there are there one or two things where you will say, I am always so grateful when my caregiver does or says, you know, blah, blah, blah, something that would be informative to um caregivers, whether they're family caregivers or paid caregivers, to have a perspective of, oh wow, okay. Uh something maybe something small, it may be something that's highly technical.

SPEAKER_00: 53:30

I I mean, I don't know that it's something that it that is said. I know that when I because cause I live alone. I'm I'm I'm a quad that lives alone. So my caregivers are are it for me, right? Like, I mean, I have a sister, I have I have other means of networks and support outside of them, but when when the rubber meets the road, it's those two, right? And so I always love when they recognize that they're my it, meaning that if you see that piece of paper on the floor and I ain't picking it up, and you and there's only one other person, like almost going out of their way to know that if they don't do it, it's not gonna get done. And by doing it, they're making my life easier. So, like I can see that, I can see when that's being done. And so when I see good caregivers like that, I know they're the they're they're the right one because they're not trying to hold me back, they're trying to let me live my best life, and that is the best caregiver that I can ask for. So I feel like that's one thing. The other thing is when caregivers can really um do their best to collaborate on when they need time off and feeling for each other without it becoming too uh contentious where I need to step in. And so I think that those are the two areas that um and sorry, and lastly, just I'm taking good care of me, like my my hygiene. I'm very like I'm very much about my hygiene, and so like knowing that oh, he needed to crab something. That was it, so um, but that I needed to be able to um get their support and they're all about it, right? And so that component is what is really essential. Um, to to like so I would say those three components would be the most essential.

SPEAKER_02: 55:37

I love it, I love it. That is that's perfect. I I think that will be well, that's that's useful to me, and I'm sure it will help countless others. Chanda, this has been amazing. Thank you so much for sharing a glimpse into your journey, your story, your passions, your advocacy. I look forward to uh partnering with you in something legislative or activist-oriented where uh we uh show the world that they they have to uh either get their shit together or get out the way.

SPEAKER_00: 56:18

Exactly. And I'm just so honored that you guys um kind of stepped out of your normal path and uh you know offered for me to come on as a caregive. And um I'm honored. So thank you so much for um doing that and kind of allowing your listeners to hear something from a different perspective. And I hope that it I hope that it's helped. I hope that it's given them a different way of looking at things, or if they don't, if they haven't felt appreciated, I you are appreciated. And so um that's another thing.

SPEAKER_02: 56:51

Amazing, amazing, amazing. Well, you take care. I would say stay warm, but it's warm there and it's cold here. So anyway, have a great day, sweetheart.

SPEAKER_00: 57:03

Okay, you two, have a good rest of your day.

SPEAKER_02: 57:07

The snuggle up. First thing I want to say is I hope y'all see that we are in a new space. If you're listening, I hope you go over to YouTube and take a gander. We've moved into our own podcasting show. Now we're gonna switch up what the background looks like. That's the point. Background might get switched up. The lighting. I wish y'all could I could turn the camera around so you could see how your support has allowed the team to grow. All right, now the snuggle up. Number one. OMG, to have our first carie, of course. She does not have dementia, but she has a lifelong lead caregiver. And it's been that way 75% of her life. To have the perspective of someone who could feed care was so awesome to do. I hope you all enjoyed it too. To know what might really work, what energy they pick up on when we may or may not be providing the best care, or maybe it's because of our mood, or maybe it's because we're tired. Uh, maybe we don't have all the training that we need, and it's okay, caregivers. Especially you family caregivers, it's okay when you don't know what to do. It's okay when you're not sure of the technique, or what is the best approach, or the best soap, or the best lotion, or the best cracker. It's okay. Ask someone. Ask someone. And if your loved one, the person you're caring for, is able to put together some coded thoughts, ask them. Don't be afraid. Hey, how am I doing? Do you like it when I give you cereal or would you prefer oatmeal? Do you like your blue tennis shoes or your black tennis shoes? It's okay to engage them if they're in a space within dementia with that works. Number two. That has been a theme of Daddy's life, my entire life. Get involved, get active. And hell yeah, especially if you would be the recipient of whatever this change is. So we look at Chanda. What she needed in order to thrive didn't exist. So she just expanded the community in Colorado. Basically, that thought if, you know, hey, if it's working for me, I wonder who else this is working for. My takeaway from that, and what I hope you take from that, is you're not the only one battling what you're battling. So as a caregiver, as a family caregiver, as a paid caregiver, as a sufferer of an injury or disability or dementia, you are not alone. Whatever is frustrating you, irking you, pissing you off is probably thousands, if not hundreds of thousands, of other people who are experiencing the same. So if you get a bee in your bonnet or a pebble in your shoe, and there's an angle where the system just isn't working for you and it's pissing you off, and you keep getting ideas, share them with someone. You may not want to do the heavy lifting, but perhaps you're supposed to plant the seed at a foundation meeting, going to a neighborhood watch, and just raising your hand and sharing what your thoughts are. There's more than one way to help the community move. Number three, I am all in for making, lobbying a big old love cake between the disabled community and the family caregiver of what is considered to be able-body community. I believe that caregivers have 95% of the same talents, tasks, stresses, and responsibilities, whether you're caring for Zetty with dementia or you're a part of Chanda's care team. And here's the deal. But what if we all get together and like bum rush all these state houses and Capitol Hill in DC, or we show up at the UN or the World Health Organization and make them realize that caregivers make the world go round. Thank you for tuning in. I mean, really, really, really thank you so very much for tuning in. Whether you're watching this on YouTube or if you're listening on your favorite podcast audio platform. Either way, wherever you are, subscribe. Come back. That's the way you're gonna know when we do something next. Y'all know how it is. I'm Jay Smiles. I might just drop something hot in the middle of the night.