In this episode, Sarah Ingladoo shares her inspiring journey of caring for her sister with complex medical needs, her efforts to establish a respite care home, and the challenges faced in securing funding and support. Discover how her unique perspective as a nurse and sibling drives her mission to improve respite services for families like hers.

keywordsRespite Care, Medical Complex Needs, Family Caregiver, Nonprofit, Healthcare Advocacy, Texas, Funding Challenges, Caregiver Support, Medical Supplies, Community Impact

key topics

• The importance of specialized respite care for medically complex individuals
• Challenges in funding and building a respite care facility
• The role of community support and donations
• Sarah's personal journey as a caregiver and nurse
• The systemic issues in healthcare funding and policy

guest nameSarah Ingladoo

key frameworks

• Caregiver Support Model
• Healthcare Funding System

action items

• Visit the Raise Respite Care website to learn more and donate
• Share the episode to raise awareness about respite care needs
• Advocate for policy changes to improve healthcare funding

titles

• Building a Respite Care Home for Medically Complex Individuals
• Sarah Ingladoo's Mission to Transform Respite Services

Sound Bites

• "Trust and peace of mind are essential for respite."
• "A great respite balances safety with human connection."
• "The system is skewed against medically complex individuals."

Chapters

00:00Introduction and Personal Updates

02:44The Journey of Caregiving

05:25Building a Respite Care Facility

08:26Community Support and Outreach

11:09Challenges in Fundraising

13:54Understanding Respite Care

16:43Future Goals and Aspirations

19:47Personal Reflections and Self-Care

29:34Self-Care for Caregivers

31:11Understanding Respite Care

33:03Defining a Great Respite Experience

36:20The Growing Demand for Respite Care

36:51Barriers to Accessing Respite Care

45:22The Need for Systemic Change

49:42Advocacy and Future Aspirations

Resources

• Raise Respite Care Website
• Sarah Ingladoo on Instagram
• GoFundMe for Respite Home: https://www.gofundme.com/f/join-rays-respite-care-mission

specialedrising.com

technology for you.

You know

For sure. Anyway.

Let's put my gun out.

no,

it's good.

I know that

like trashy as I like chop chalk away. Yeah.

How's

it going? So how's it going with the you know, the foundation and shit? It's good.

Did you just say shit? Is that it's like

The joke I was this is not

the real interview.

Well, it really sucks because people don't want to support us. People suck.

⁓ 'Cause people suck. ⁓

okay. Well I am recording this part, so we could use it if we want. Yeah. I think so.

Today.

Okay, this would be a perfect fire. Today I'm irritated.

Raised being a grump. My kids are being crappy. So it's an irritating day. Irrity day. Let me just show you this, so quick. Look at this disaster I'm in.

Mm-hmm. Really shitty day. I'm so sorry. It's a lousy day to do this. Yeah. I get up. ⁓

Wow. You r literally carved yourself out like the slightest piece of this room.

Like a spot

that doesn't look like squalor, but this is all squalor. I'm like this is gross. Yeah.

Wow. Wow.

Yeah, no, this you would have no idea 'cause it looks great right now. It looks like looks like an office. Very professional, yes. You can't move though. You're trapped.

Little professional, huh?

Yeah, just stay in this spot. Otherwise you'll see you'll see filth

and dirt everywhere.

As long as there's no bunnies or snakes crawling out of things, we should be okay.

Right.

Well,

I mean who knows what's growing in this room. You don't know. Yeah.

You don't know. That might be where the bunny went. Do you still have the dog?

Dog's doing good.

Dogs well the dog there's a crate in this room that it sleeps in at night, but then it is outside during the day. But who takes care of that dog? Yes. Yeah.

⁓ nice. Cool. And she's like no. Already? She's

all right.

She's

a she's a a case, that child of mine.

Yeah. That sucks.

I'm sorry, 'cause you d the last you need it as another live thing to to take care of. Yeah. Well, let's try to make this at least a good part of your day. Okay. I mean cool. Yeah, I've got my questions hanging here. I've got my question other questions on the

Right.

That'd be fun. I got I got my note I got my notes over here on my screen.

computer. I really just, you know, those are like reference things, but basically just we're gonna have a conversation and you're just gonna catch me up and then I'm gonna, you know, I'll throw in some of this other stuff, just kind of round it out a little bit. get get your take on stuff. ⁓ what was your name last year when I when we met? Is something with a B?

Yeah.

Okay.

Burton, that's right. Do you go by Bert? Do you go by it's your maiden name Burton? So Ingledue is the married name. Okay. So yeah, I've been referring to you as Ingledue because that's what is on your site, I think, right? Yeah. Okay. So I guess we'll stick with it. Does that work? You'll take it. Stuck with it for now. ⁓ Yeah.

I made a name.

Mm-hmm.

Yes, I think.

Thank you.

Exactly.

all right, so I'm just gonna welcome you and say hello and then we can just jump in. Sound good? All right. You nervous like last year or no? Not as nervous. Good. That's awesome. you don't seem nervous to me at all. Seem nice and relaxed. That's good to see you too.

Okay. Yeah.

No. No. I don't think I'm nervous.

Good to see you too. It's funny 'cause like we've been talking all year.

I know.

With these with very rare visits, like face to face.

I know it's fun.

Yeah, it's cool. So, okay, well, Sarah Ingladue, welcome to the podcast. Welcome back to the podcast.

Thanks.

Thank you.

It's been a little over a year since we met and did our first round. And I wanna hear all about the last year and what's going on with Ray's respite care.

Well, so we've been you know, well, officially two years this year and we've grown sadly. Okay.

Let's go back a second. Let's not jump let's go back a second. Let's not jump right in because I just kinda wanna

remind people who you are and stuff like that, if that's okay. ⁓ yeah, I was I Okay. Sarah Inglinuo Sarah Ingladue. Sarah Ingledue, welcome back to the show. So great to see you.

Yeah. Take take take two.

It's so good to see you. Thanks for having me back on here.

It's my pleasure. It's my pleasure. I had such a great time with you a year ago. And somehow we became like really good friends. So yeah, so so icing on the cake. The way we met was really interesting because people don't know. I I s came across your Instagram and within fifteen minutes we were on the phone talking to each other and I think it was the fastest I ever connected with someone 'cause I'm like, I have to meet this person because of your story and then if people want to hear the full story should go back and listen to our first interview 'cause today we're gonna kinda

I know, it's amazing.

move beyond where we left off and see how things have been going in the in the past year. But you know, how have you been doing? How how are things going with you in your life? You doing all right? I mean we talked about your family and stuff like that. Things going okay? You're like in a in a decent place or or what's going on? Yeah.

Yeah. I mean everything's

going great, just doing the same old thing, taking care of Ray and just living life, you know, a family. So

Cool.

Can you catch us up a little bit just a little bit about yourself? Just give people a backgro a little bit of background. Just a a real quick touch of it. They can go back and learn way more in the first one, but just to update people.

Yeah, so I'm a registered nurse. I've been an ER nurse for years. I worked pediatric and all over. But five years ago I took on the full time care of my sister, Rachel, who has Cornelia Delang syndrome. So now I have the full time caregiving responsibility of my sister, and it's the best blessing in the world. She's my best friend, and so every day is a joy. I mean, not saying that there's challenges, but it's one of the best things I've ever done. And

So I'm like a I'm a different case because siblings typically don't take on their siblings like I do, you know. But this has been my lifelong dream, something I've always wanted to do. The reason I became a nurse, so

incredible because not everybody has the skills too to be able to take on your sister's situation because medically she's very medic medically fragile so you have to really know what you're doing in order to really care for her without other assistance, right?

Yeah. I run a hospital from my mom every day. Basically what I do.

Yeah, right, exactly. You know, pictures of

it's like a mash unit in in your in your house there.

It's good smash over here, yeah. A little crazy. I

say it's easy, but it's if somebody else did it, they would be like, This is a lot of work. It's it's a lot of work, but it's just

Goodness. I mean, in getting

to know you in the past year, this is not easy at all. I mean, you make everything seem so easy and you always stay so positive. And I think if people go to your Instagram, they're always gonna see a smile on your face. I don't think there's ever a time I've never seen you I've ever seen a picture where you're not smiling. so you you you bring the joy to it, and I know you get a lot of joy from it, but you bring the joy to it as well. And somehow you stay positive and it's it's like, you know, also you live in Texas, so you live on a farm, so you got you're taking care of.

Animals, you're taking care of your kids, and you're taking care of your sister. I mean, it's just if people knew all that you were doing, you're like a superhero to me. It's just incredible.

Let's do.

I mean, yeah. I mean, I'm not saying there's days that are hard. There's some hard days, there's challenges, but like I have to remember I have to get up for her every day because she depends on me to feed her, to change her. And like when you think of those things that you're doing for her, then you see the joy in like the care that you're providing. 'Cause like I want her to be able to live quality of life and you know, if I'm not getting up every day for her, then you know, what am I doing?

Yeah.

What do you think it is about you? I mean, not to blow your own horn. I you don't you're not here to toot your own horn, but what do think makes a little what makes the kind of difference in a s in a sibling who is willing to make that connection? Because it's not anyone's obligation as a sibling. I want people to know that. You're not obligated to to care for your for your your sibling the rest your life. It's it's great if you can contribute, but you're not obligated and I you know, I think people feel there's a lot of pressure on siblings, you know, what with what to do and who they are in relation to the family and that kind of stuff. So

Yeah.

Where did you kind of find your feet with that?

I would say like I fell in love with Ray when she was born. You know, we have a seven year difference between us. And so being a little older, I just like I was in love with this little thing, this little sister I had, you know. She looked like an alien to me at first because I'm like, What is this? you know. But then watching my parents take on her care, I was like, I wanna do this someday, I wanna be her nurse and that's what drove me. But I also just have I

Mm-hmm.

Mm-hmm.

know we have this special connection. I could it's I've literally it couldn't even tell you, but I mean maybe I'm a little like addicted to her and maybe it's not a healthy thing, but I just have always, you know, like felt this this compassion and this like love for her that, you know, that has never ceased. It's only grown over and over, you know.

Yeah.

Yeah. There's certainly no negative to that as far as I'm concerned. You know that that's a an addiction if you wanna use that word, but addiction can be sound very negative. I I really it's just really absolute pure love that you you seem to have for her and it's

in

my clinic or like my professional experience, I've seen nursing homes. I've seen, you know, and so when I was sixteen I got my CNA license so I could, you know, help do like some of the care in high school for my sister. And I've worked in nursing homes. I've seen home health. It's a terrible, terrible situation. Like those people I'm not saying every place is bad. I'm saying that it's not like a true thriving, loving place environment that these people get, you know.

Because they're understaffed, you know, they don't have the time and then they're burnt out. So the compassion and the love is gone, you know. And everybody needs to be loved. That's like love is huge, huge, you know. And so

Yeah,

a thousand percent. And I and knowing you and and witnessing what you've been going through through the past year in our fr during our friendship as our friendships evolved and getting to see more and more. I mean, she is s so fortunate to have you because you've given her a life that she'd most likely never would have had. I mean, you take her everywhere, you expose her to things, you know what she loves, you you you you entertain those things and

And you, you know, she's adorable. You can't help it. Like the more you get to know Ray, it's just like, yeah, and she's got a got a real strong personality and man, she'll let you know when she's pissed. Right.

I mean kids are like, yeah.

A day is a day.

Today's like today. So

No, that

girl that girl lives life though. She's done everything and anything, probably more than half the special needs population out there. It's crazy what we do with her, but I mean why limit her though? It's like just because she's disabled, why limit those opportunities for her to experience? Like she loves socializing and going out to eat and doing all the you know, riding rides and shopping and all the things.

Yeah. More than just a lot of people in general, you know.

She might not understand it and but she loves it.

Yeah.

makes her happy, that's all it's instinctual. It's yeah, that's fantastic. So let's get down to the the the respite care home that you want to create. We after we met, we started a GoFundMe and we started off pretty well and we got to a certain point just around seven hundred dollars then it just kinda like stopped. I mean everybody's asking for money every day it seems more and more. and so it's really hard to get people to donate.

Yeah. Yeah.

so I'm kinda wanna know what the journey's been like since we last spoke, where you kinda are at, what you've been doing in the process what's the process been like for you to try to get more support.

We've grown in like our outreach and the clarity of the mission. We've built like the community support. We've responded to some caregiver needs. We've strengthened our foundation to establish to eventually be able to establish this facility. Obviously it comes down to funding. It's like your biggest default in being able to grow. But we do have like community impacts that we've done with like hands-on support for families.

But our obviously my long-term goal is to build that, you know, home to provide respite care services. but we've done like small provisions of medical supplies and essential items. We've gotten gift cards from like local grocery stores that we were able to help like fill the gaps for families, you know, that have financial strain in our community to give them nutrition and household needs. I've been able to do like small.

medical equipment, I've gone to people's homes and done like home visits and like hands-on care. I've been able to educate and provide like guidance to families that have that need like help managing complex needs safely or just effectively in their home setting. So overall we've we've expanded our impact with direct service and education but our foundation is to build a future dedicated facility.

So that's something that I missed last year and and learned more about as as we got to know each other was the fact that I thought really this was about building the one facility, the one structure, and that's where you would operate out of. But in the meantime, you're actually still facilitating families in the area while you're pursuing this, which is amazing and and time consuming and very difficult. And I know you don't have a lot of people helping you. ⁓ it's it's you

Mm-hmm.

No, it's it's like me. Just me, myself, and I

It's like you're

I mean I have a I have a board of directors that you know we have our meetings, but like in terms of staffing, it's me. It's just me. And so like trying to run that and like social media and all that, like I just I and then care for Ray, it's like I I'm my plate is like it's I can't can't do it all.

Just you. So

Yeah. You're pulled in

a thousand different directions. It's really, really hard.

But I mean, I would say that like like our goal was a home, but like but we're in the grassroots, right? So we're just like we're building. But like I I knew right off the bat I would never just like have a home, you know. Like it would take time. It takes people to like believe in you and to fund it. But I mean being able to like have a little bit of money to provide these small supplies.

Or items. Dang it, you ruined it. Okay, I have to take a sip of water real quick.

Sorry about that. Sorry about that. I know. I know. Okay, you

took a sip of water. I I was trying to find the dude not to disturb on my computer. I don't know how to do it. So it just freaking dings. Go back just a second about finding people to do it.

Mm-hmm.

Just that the small money that I have gotten, like being able to provide these small provisions to families or like buy, you know, small medical things or to be able to provide gift cards, like has been a cool part because respite of course is like a short term break, but respite can be provided in other services as well, you know. So I've been able to do like the small steps to get that will eventually lead me to my bigger step, but but also

Mm-hmm. Can you describe some of those

the smaller respite things? Like what you were talking about with the with the the cards and things like that. Give certificates.

Just like

Yeah, so

like obviously like if when you define respite care, it's temporary care that to an individual with medical, developmental and functional needs that gives their primary caregiver a short break. So that's like the definition of what respite is, right? But I think that it's misunderstood because everyone thinks it's like end of life care or it's like institutional care. It's not, it's just like it can be in a home, it could be in a facility, it could be through you know, wherever.

It can be through nursing staff, it can be through like just family members or friends, anybody, but it's you know, the the purpose of it is to provide care to reduce burnout. But also you could do it in by supporting like respite can be a support system that you know helps with like supplies or feeding stuff or mobility equipment to help stabilize the care needs and prevent that caregiver exhaustion. So

That's like what we I've been able to do at this point since I don't have a home. So I can do like the small resources to, you know, allow caregivers to maintain safe care at home, but that still pervert or preserves their well-being and their health, you know. They're not like financially strained, like I can't make everybody's dreams come true right now, but I can offer the small, like a small impact, you know.

Yeah. That's that's fantastic. So have you tried to get businesses, companies, places, medical facilities to donate supplies to you in order to be able to kind of do this this ex this work independent of the whole?

Yeah.

So I've reached out to I I did like local grocery stores and they they were very kind and have given me small, you know, donations and gift cards that and then I've reached out to diaper companies that I use for Rachel. And North Shore is one of them and they want to have a conversation with me. Vitality Help is a medical supply company and they're in the works of looking to see how they can help me. So I've reached out, it's just like it's just a waiting game to see like

what they can do and when they can help you. So I mean if you but the key is you gotta just keep pushing the button. It's just keep asking and asking and asking because eventually somebody will come through, you know. I would love to have like a like an emergency supply of like diapers or supplies like gloves or whatever, just to be able to hand out to people because like for me, like that's my biggest expense for Ray is diapers. Like Medicare doesn't cover it. And I'll go into all that

like later on about the transitioning and all that stuff and like some of your other questions. But Medicare doesn't cover Rachel's stuff. So her diapers and wipes and all that incontinence care is on me.

Mm-hmm. Yeah.

All out of pocket.

Yeah, that's incredible. Yeah. And expensive, yeah.

Inexpensive.

Yeah,

because I was thinking if it was some way we could find some businesses, whatever, to be able to make these steady donations or just have people donate if they have extras, you know, that you could have even just a storage facility, you know, where you can store things and you could kind of work out of that and start building from there. Because that would be an amazing thing to be able to do while waiting for a house to be built, right? You're not looking to buy a a f a a standing home already, you're looking to build from scratch, correct?

Yeah.

Mm-hmm.

Yeah, I'm I have the land. I just need the funds. Yeah. And I'm not looking for anything crazy big. I just want something small and simple, but like capable, you know.

You just need to Yeah. Yeah. Have you been a

Yeah. How many people are you looking to house in in this at one time? Because it's gonna be like a turnover thing, right? It's not like somebody's nobody's living there full time, it's people can it's kind of temporary and then you turn over. So how many I guess how many how many people at a time are you looking to facilitate?

Yeah. Yeah.

Like short term breaks.

Well, if I had the staff I would do like five, but probably two to four, depending on what we can build and medical equipment and all that that would need to be in there. So

Yeah. Yeah, and then you

need to be able to pay nurses and things like that 'cause you need you need people qualified to be able to take care of medically.

Like the goal is to have more professional staff than or volunteers. I'll take some volunteers too, but people that are trained though, because like it's I want to provide it to medically complex individuals, not to like discriminate against like disabled, because I think there's like there's key differences between when you say somebody is disabled and when they're medically complex. So like disabled, they don't require medical care.

Yeah.

And they're related to like functional support and daily living, whereas like medical complex are ongoing medical care needs. You know, they need the supervision of a medical professional.

Right. So it's a very specific population that you're looking to treat to to facilitate and help.

Yeah.

And not saying I wouldn't take disabled people. I would, but it's it's I would take anybody, but the go the goal is to like to help the families with those severe cases of complexity have a a break from, you know, the ventilators, the G tubes, all this stuff, you know, just 'cause it's it's ta it's taxing. It's taxing having to do that every day.

I know you would. I know you would. But the goal is the goal.

Yeah. Yeah.

Yeah. I mean you'd never know it knowing you, but it is taxing on the average human being. But I mean that to me it's like that's a that's a need too. There are facilities for all various types of us people in the world, right? So it's all but this is a very specific population that does need that extra care.

Yeah. I don't I don't show it.

Mm-hmm.

that is incredibly, incredibly time consuming for families, stressful, economically stressful, strainful, mentally strain f stressful. So that is an amazing goal, I think, to be able to give people like this some of break. and now that I know that you're in the meantime, because you've told me about like the gift certificates and stuff, but I didn't really understand it in relation to respite for people, you know, I thought just that was another

and angelic kind of nice thing you were doing for people. But this is another phase. This is another phase that I I want people to hear about. And if there are people out there that have the wherewithal to be able to donate, because it becomes almost like when you think about like a food drive kind of thing where you house a bunch of food and you can give out to people. Medical supplies housing. Yeah. So like a medical supplies bank, you know.

No, I mean it is, but

Phone bank in a way, yeah. They named it.

to be able to donate to you and and that kind of thing would be another wonderful thing to pursue while you're trying to find the foundation's, you know, financial situation to be able to create what you want.

Mm-hmm.

No, I agree. I mean, it's just like if you can provide those provisions, then it's like that's like a considered respite because it's like a relief, a short relief from just having maybe that month to have to buy something or maybe have to wait on a list for a piece of equipment that will probably take years, you know. So you can do those small respite reliefs, but that's not the true goal of

Yeah.

Yeah.

Yeah. Mm-hmm.

raise respite care because ⁓ there's so many peop other people out there that kind of do similar things but in a different way I guess but so I want to help people but I don't want them to think that I do it through just like giving you money or gift cards or equipment. I would I can offer that now until I go home. So that's just the key difference.

Right.

Right. That's not right. That's the goal. And

once this whole home starts, then of course that would be the full time business in a sense. Yeah. So what since in the past year has there been anything that's kind of materialized for you as far as donors or people that will be willing to help you financially that's moved the moved the ball up the field a little bit since last year or

A lot. yeah.

Does there look like there's promise in the nearer future or does it still feel like it's far away?

Some some pretty good donations, you know, like higher end donations. I mean, we're we're not making over fifty thousand a year. if you look at our 990, we're still under 50,000. But we've hit close to that, which is pretty good. And that's like a one-time donation I've gotten, like small microgrants. I applied to every grant possible, denied all the time because there's a million people, it's a competitive field out there.

And you have to kind of get in get that niche to be able to get into them. Or they're like privately offered through like an invitation only. So it's like I think that is probably the big the biggest challenge. But I've had I have people that are kind of like sponsors that are willing to like

give every year smaller amounts, but I mean I have something to sustain, but not to really grow right now.

Yeah. Mm-hmm. Yeah. Well, if people are out there and have an idea about how to help out, please reach out to you because and we'll give all your information out. but it's it's certainly something that I would think would be challenging to continue to keep your your motivation and your and your spirit up to pursue when it is such a slow process and probably has it crossed your mind that it's just like, well, you know

I wanted it, it's hard, I don't think it's gonna be possible. Have you crossed the and those have you stepped up? No, you've never gotten there. You talk to that.

refused to get to that point because I feel like I like a challenge and I've been a nurse. This is a business I'm running now and it's like a different field for me. So I mean I'm learning. But I would say back in when my younger years of like asking people for money, I would have been like, nah, I'm done, you know, because I didn't like that. But now I'm like, I'm not afraid. I'm just like, hey, I we need support. And you know, and

Again, that's like funding is essential because that's how you can make meaningful progress. And but I think also it's not just the funding, it's like people have to have a belief in your mission and share like the commitment to support you in order to fund you. You know what I'm saying? Like if you don't have people that are advocating for what you believe in, like your mission, then nobody's gonna want to donate because

Like every everybody has a a GoFundMe or a a mission out there to they need money. Everybody

For sure.

And the thought that crosses my mind too, it's like, okay, well this is this is one home that maybe has two to four to five people. It's small, you know, in one dot on the country's map, right? But that's that's we can't think about it like that.

Because that's still potentially up to five people who and families, multiple families. It's not just five people because it's not five singular people. It's all these families that can come through your facilities. So it's it it s expands and people can actually come to you and travel to you for this. And so

And who knows,

someday you could grow and be in different places. You never know. Or be able to travel to go help other people. I mean, there's potential to do lots of things. But I think also it's they have to understand like what makes Ray's respite care different, you know, than just like respite care that's offered through the state or whatever or families. And I just think it

Right. Exactly.

Yeah, it's a great point.

Mm-hmm.

Obviously, it's built on nursing, professional nursing experience, but also it's I'm living it. I'm living experience of it every day. You know, I I'm a sibling who stepped into this role for my sister. And I'm not, this is not like a theory of trying to understand caregiving. This is daily hands-on realities, challenges, responsibilities that I face and every other family faces. So the combination of my training and my lived experience provides like an

Yes.

a unique perspective on what respite means and why this is so important to me and why this could be such a great thing. You know, ⁓ I understand it clinically, but I also know it emotionally, practically. I know the exhaustion, the responsibility, the decision making, this, the, the need for safety, this, you know, and the support you need without having that fear, guilt when you want that break. You know, I think that's the biggest halt for people is when it

Mm-hmm.

to respite is you fear you don't trust and you feel guilty for having that break and I feel that too because like I tire myself out and burn myself out every day without taking a break or do anything for me and you know that and so because you feel like you almost feel guilty like I can't do this or I'm afraid if I let somebody else watch her for five minutes like something's gonna happen or you know so

Mm-hmm. Yeah.

Right.

And I've s like you said, I've seen that. Yeah. No, I mean you walking in there in somebody's shoes and being relatable is it just ups the anti

think that that makes a difference. Yeah.

Like and

and it it's and walk I'm walking in their shoes, but I'm also like this a sibling who is I'm not I'm not a parent. I'm a sibling. That is like and then I'm a nurse so that adds a little extra. But you know, it just I think our situation is so unique that it makes us way different than just like me wanting to offer this service, you know.

But you are, exactly. That's right.

Yeah. No, I think it raises the trust and the buy in level. Mm-hmm. Like way, way more than just a a regular facility where you have people who are working in the facility but aren't having never been through the experience, right? They're

That's their job, but it's not that they know it from the inside. And you know it from the inside, plus you know the medical side. So literally that trust level has to be almost as as as high as it could possibly be for people coming in and meeting you for the first time. And I know I've told you through over and over again that you need the respite, and I wish you would get some for yourself. You don't take the time for yourself, you are just you're just going, going, going constantly. but

That's you know, that's up to you. I can't I can't make you do these things. You do. Yeah, no, I'm I'm yeah, but you do those small things. Can you talk about some of the small things that you do that are relatable to people that might be give them an opportun You know, I wanna get more I don't want to get so sidetracked on this, but just as far as you're taking care of your own mental and physical health, give me like two one or two examples of something you you do.

Hey, I do small I do small things. I start small. I do some small things.

Okay.

A you have to go work out. Like I believe or at least maybe not if you don't want to work out, but at least move your body other than just like your caregiving that you do. Like for me, I love to go to the gym and I like I want to run, I want to lift weights because I just feel better. And then A, I need the strength to be able to lift and transfer Ray, you know. And then I will I like to read, take a break and read some some nice books.

Yeah.

Sort of put my mind in a different world, you know. And then and then like just you know, the girly self care, like do a face facial mask or like maybe paint my nails, which I did do the other day.

Yes, absolutely.

Just in time for the interview, so that's good. Thank you for that.

Just actually they're kind of all nasty now, but but

if you just if you like if you just take care of yourself a little bit, which is hard to do, it is because I don't always I don't get to just like go to the gym like everybody else. Like I have to re depend on my thirteen year old child to watch Ray to go to the gym, you know. but I mean I do live in the country, I could go run outside, which I do sometimes if it's not a million degrees, but

Right. Yeah. Dodging snakes. Dodging snakes.

I'll die out there. ⁓ but yeah, you you have to take

if you can't you can't take care of somebody if you don't take care of yourself, you know. Also eat good food, eat good food that gives you energy because like food is fuel, so you know, fuel your body so you can show up every day.

Yeah, I think that's the bottom line.

And water

is life.

We joke with each other about that all the time that water is life. Whenever you feel down, just drink a lot of water. st so do you have you do you have a sense of what respite like

If some water might have to do.

I don't really want to phrase this. I really was actually gonna just ask about respite care and other families, but you kind of explained it, so I'll skip over that.

I mean, I would say one thing when it comes to respite care respite care is like I mean I would say or I said mentioned how I'm different, but I think there's just like that like back to the definition, there's just a misunderstanding of what what it is. It's not end of life care or institutional placement. It doesn't mean like you're giving up this, you know, to let somebody else care. It's just to give you a short term break. Whether that's one day or maybe that's like three days or a week to go

Go to vacation with your with your other family members. And it's not because you don't want to bring that special needs individual with you, it's because you have to take a break. You have to have a break. My parents did it, I said it in the last podcast as kids. My parents had a nurse that came and watched Rachel, and they would take us on a vacation just so they spent time with us or they're spending time with their other family members. Because you have to have that. You have to maintain, you know, those other relationships in the household or with other people then.

Yeah. Yep.

just that relationship with that individual that you're caring for. So I and they underestimate the level of like medical complexity that can be safely supported in a respite setting. They don't think that, you know, they'll have what they need to be able to care. So I mean, but it can be at the home. And sometimes I think it's if you can keep it in the home, it's a good thing because it's like a familiar environment for that individual, you know.

Yeah, a thousand percent.

Mm-hmm.

Sure,

sure, sure.

But if you can have a place that is like not facility like, more just like a home loving, you know, that gives them that not that yeah, not that like hospital vibe, but just like a home where that they feel like they are being loved and just in in this environment of, you know, peace, I think that's what gives great respite for that individual and then the family feels more at ease.

Yeah. Not institutional. Yeah, not institutional.

Yeah.

Yeah, as they deserve, as the as the people as the clients deserve and as the families deserve. I have to go to the bathroom really fast. I'm so sorry. This has never happened before. But I know it's you, so I know it's okay. I'm just gonna mute it so you don't have to listen and I'll right back. Okay.

my gosh.

Okay.

Okay. I'm gonna

hear it in the background.

Sorry, I knew I should have done it before we started.

Water that you're drinking.

All that water, that's life. So as we're talking about defining respite care, can you define what a great respite experience would actually be compared to maybe what people have in mind or in support they've received in the past that maybe has not been the best? What it would what would you say is like a different like a unique experience or a a good quality experience?

It is. It is five.

I say

And maybe we've covered this already enough, but let me just give you a chance to make

Nice.

Just something that includes safety, trust, consistency. like you have to have that peace of mind. That's like the biggest key is like do you trust and have peace? Because otherwise, if you take a break, your mind's just thinking about are they doing the right thing? Are is my child safe or my adult, you know? are they being respected in their treatment? Are they being at you know attended to?

So I think the individual receiving the support, they need a familiar routine, being respectful obviously, and very attentive to both their medical and their personal needs.

I'd say from the caregiver's perspective, it's peace of mind. It's knowing that their loved one is safe with competent, compassionate care that, you know, understands their medical and daily living needs, that clear communication with the caregiver and trust, you know, give them a progress report or like have a video that they can see their loved one, those kind of things so they can rest without worry or feel like they have to intervene, you know.

Right. So like like having cameras in the place that people can actually connect to their phones maybe and be able to view what's going on. Yeah. Yeah. No, I think that's great.

I would say just

Yeah, I mean, 'cause why not? They have every right, you know. It's the

goal is not to like inhibit their ability to see that their person. It's to, you know, just have that peace of mind without, you know, to not worry. 'Cause I know if I were to like send Rachel to a home, like a if I if I had to have a break for some reason and I had like put her in a nursing home, I would I would be dead with worry. ⁓ You know, I would never like

Yeah.

Yeah. Yeah.

my brain would never settle down. So I think overall a great respite experience balances the clinical safety with human connection. supports caregivers and in the ability to step away without fear or guilt and ensures the person that's receiving the care is secured, well cared for and loved. I think that's okay. Yeah.

Yeah. It's so well

said. have you spoken to families that are in a similar position to you as far as what their journeys are like trying to and and what's it like some of the barriers that it's hard, you know, in trying to find respite care and and you know, people who are just kind of starting out even, who are looking for that long term care or, you know, when people age out of school, you know

Yeah.

Got a lot to say.

What w what have you

sp ev yeah, go ahead. I'll let you go. And go. Hold on, let me put my seatbelt on. Go.

Be ready.

Okay. I

would say that there is a growing demand for respite because more families are choosing to care for their individuals at home, like parents or you know, or even like kids taking on parents as well. That that's like a becoming a normal thing. And so the need for like temporary relief support and safety, you know, continues to increase all the time.

but the availability is not keeping up with the demand. And that's where, you know, people are left without reliable options because you have this like high need, but what's available is like down here. And so even when families are able to provide that care for loved ones at home, caregiver burnout is always present in some form, whether it's acknowledged or not. Most people won't say, like, you know, I never say it, but I mean it's there, like.

Mm-hmm. Yeah.

Like there's days I'm like, you know, like I have to like tell myself to like it's okay, you know, you gotta push through it, you know. So we don't always acknowledge it, but that doesn't mean that we're not able to care for our loved ones, or that we're doing something wrong. It just reflects the reality that we're providing ongoing care, that's demanding over time, you know. I would say that when you recognize and address like burnout that

Like if you see it early on, it it's it's not a sign of failure. It's just a natural part of the long term caregiving process. And so you have to have a system that balances likes and has stability for both of you. I'd say, okay, for I gotta read my notes for this one, okay. Sorry. Okay, so the growing demand in Texas is like

Yeah, go for it.

Shit, I'm sorry,

so say that again. Ready, go.

Okay, you know what? First you pee, then your alarms.

I'm so

It's only 'cause I'm so it you get the worst treatment because you're s you're so familiar and and my friends, so you get the worst treatment. Should be the opposite.

I'm just giving you a hotel.

This is perfect.

wrote down some statistics for not statistics but like for Texas the growing in demand is like huge in Texas okay and it's driven by like you know these adults and children with these complex needs are living long like they're living longer than expected because of our medical advances. So as they as families take on the care at home the the safety and all that becomes essential to sustaining. So there's a nursing home in Texas just for children.

Yes. Mm-hmm.

like a children's nursing home. It's like one of very few in the in the US. And these are families that have and it's just for eighteen and under. And these are if but if you come in before the age of eighteen, you you can stay your whole life. So there's like a forty year old there. There's like, you know, because you have but you have come in below the age of eighteen. and you know, these families no longer

like can meet the full-time needs of their kids or they don't have like consistent family support and so they but the problem with that is like the the the wait list is like insane you know they're a hundred bed facility and then you know you're on this wait list which you might never make it you know so this is where I want to be a bridge because I if if I can build my facility

I can provide and I've I've partnered with like other nonprofits in our community and I've met some of these kids from the nursing home that they brought out for an outing. and I've talked to their staff. And so if I had a like a facility, I would be able to take these children on short term breaks for a holiday or a special occasion and get them to have the experience of like a warmth routine, a family centered setting.

personal and connected for them. Like that would be the coolest thing ever, you know? Because th they're just stuck in a nursing home. Not saying that it's a bad thing, but there's so many kids with like a ratio of, you know, what one nurse to like 12 kids, you know, you're not getting that like connection or engagement that they need. so I feel like that would be amazing.

I'll let them.

Mm-hmm. And I love the idea that you when you said too, like this starts as one place and maybe you could grow and expand around Texas and around the country. So this is like you you can cre yeah, I mean you could create set an entirely new precedent for what respite care is.

Yeah, you could just you could it totally escape.

So like my reality with respite care, like I don't I'm not looking for respite care for Ray, but like when kids transition, right? So they can stay in the school system till they're 21 and then they transition out. And most of the time, when they families can find like a placement in a day program, but it's also dependent upon

level of care required for the individual. So Rachel was like in a program in Colorado at work at, and they had it in ABC D group. So A was like your autistic kids, you know, functional A and B were functional Downs and Autism kids or C P kids that were functioning. They would go out in the community and do like meals on wheels and that was the like their purpose. Rachel was like in the C and D, the the C P kids or the

one to ones that need like feeding care and all that. And they didn't get to go out. But the problem with the program is that they don't they can't maintain the staff ratio to s or the specialized training to safely support these complex needs individuals. So then these families, you know, that are looking for this respite relief of a day program during the day, because that's like when they're adults, this is where respite comes into play is these day programs.

There's one in here in van. It's called a knitting possibility. So it's like three days a week. But you have to you have to apply for it, you know, and it's only so many hours a day. So that's like what families when they transition off out of twenty-one look for respite through these programs. but Rachel was pulled from it because they couldn't provide the one to one assistance. And so she no longer was able like could meet the

Like that, my parents didn't use that as respite support. So I would say you know, that's like that highlights the a gap between available services and the actual needs of these complex individuals, you know. And it's same thing for like

respite in the community. So if you're looking for respite, which I'm not looking for respite, but I'm looking for transitioning Ray from Colorado to Texas, right? So she's out of Colorado where she was like full Medicaid and had all the SSI and all those services. And now I'm we're in Texas and she I'm denied every day because of their system and this is where the barrier is is so respite funding and access and

Texas operates through Medicaid Home and Community Based Services, which is an HCBS waiver program. And it varies by the population and eligibility. So those that have intellectual and developmental disabilities can afford medically fragile children.

At an enrollment program. So it like the wait list is like when I I'm I'm on it for Ray, but it they said it'll be 18 years. I mean, Ray will probably be dead before I should ever get her name called. So there's a like there's a one, there's one for children, but the one I'm also looking at is a class waiver. and these are all for respite services that are covered under these benefits, but it's like

Really. Weightless. Yeah.

The process is insane because it's the statewide demand risk it exceeds the capacity. you know, it's like tens of thousands. I think I looked up this like this current stats is like 200,000 people waiting right now in two tw 2025. so the case is like these families wait for years to re end up before they'll ever receive full access to any service or so it ref it reflects the broader.

Mm-hmm.

If they ever get. Yeah.

gap between the need and the available funding. And so that's like so my advice to parents is like you start before the like you start when the child is born. You start then because by the time you get on the list, by the time they're 18 or 19 or 20, you can have options when they're 21 and above, you know, because if you don't like for us, we had to move from state to state. And so that just like

Right. So the need is very high.

Get on this.

Hmm. Yeah.

puts us backwards, you know. also like the respite services in Texas account for less than one percent of the total waiver expenditure. So like they, you know, there's there's nothing, you know. And their their goal their goal is to like reduce caregiver burnout and prevent out of home placement. But when you have like a one percent, you know funding funding fee.

Yeah, yeah. It's not uncommon.

It works against it entirely. Right.

You're like, that doesn't make any sense because nobody and then

It doesn't make sense. Exactly. ⁓

you know, and then every home here is full, you know, so there's like there's gaps to it's all fragmented in so many ways. It's terrible.

But that seems to be the way it always is it you know, there's a lot of big talk, but the funding is never is rarely there and it's less and less now too. And the reductions that are coming in Medicare and Medicaid potentially, you know, I think people are really gonna be in trouble. Yeah.

It's all it's terrible. ⁓

It's just gonna destroy these. Yeah. So

Texas has an invest like an a life care lifespan respite care program. It's called Take Time Texas. And it's to expand awareness and coordination of respite services for caregivers and individuals of all ages with chronic or whatever disability. The program is short term relief and caregiver services, but again, the funding is limited relative to the scale across.

Mm-hmm.

the state, you know, so like for Rachel, I'm try try I'm try Rachel has Medicare. Medicare doesn't support many services. I'm trying to get Medicaid because I Medicare won't cover diapers, it won't cover anything. If I can get on these this Medicaid waiver program class or these other ones, the community you know, based healthcare, then they will cover her diapers and they that

that gives me respite because then I'm not paying out of pocket for this stuff. And then if I n ever needed these services, it's an option within the waiver. But she's denied, but it's like it's crazy because like you know, they go off of what she gets for social security. Well, Rachel has no neat understanding of money or anything. She, you know

And then you have to have doctors, and then you know, you they tell you to call this person, but then the they nobody answers the phone. So like I would recommend to families like to use disability advocacy centers, but the all the the problem there is that they're limited funding and they only accept so many intakes. So I feel like the system is all skewed and we talk a big game of wanting to like

Everything is limited.

keep our individuals at home and like help ours, you know, help our communities, but yet there's these gaps because, you know, there's no funding and then we have these waivers and these wait lists. And then there's just takes away the hope of like having that ability to really take care of that individual.

Yeah.

Right. And then it also potentially encourages re the return to like institutionalization because families can't afford. And when you're charging families for the room they're rent as a rental, the bedroom as a rental in your home, that's money that's coming out of the SSI as well. So it's really just everything just seems to be ass backwards and and more and more paperwork and it just makes it more har more difficult for people to do what they need to do.

Yeah.

Well and

like the state, if you go through the state, like the I think you only allotted like twelve hours in respite care where that's another gap because there's lacks of lack of flexibility for families that need weekends, holidays, you know, evenings, medical appointments, maybe they have an emergency or they're just you have to go through, you know, the availability of the state, which nobody should have.

Yeah, that I didn't know. Yeah.

So instead

of you know, trying to accommodate all these things, that's where raised respite care if I wanna seek a practical solution to meet families where they are, rather than these families required to fit into a rigid system, you know?

Mm-hmm.

Yeah. That's a great way to bring it all back around. I I appreciate that to round out the conversation. any other thoughts on that? I don't want to I'm sorry.

No, not like I said. I was just looking at my Texas thing. But it's crazy though. If you like look at the Texas Medicaid, it's a terrible program. And I part of it too is that don't put this in the podcast though. Don't put this It's just that like I'm not saying that everybody doesn't deserve like to be in these waivers, but I'm like you have to like

Yeah.

No, no. Okay. No, this is you and me.

physically look at the individual because we're just on a phone call every day. Where I'm gonna take Rachel to the office to and be like, this is Rachel. This is why she needs this. You know, physically look at her because just through a phone call, I mean, we're just and I'm not I want like resources for everybody. I'm all for that. But when it comes to medically complex, there should be some like some standard to it. You know what I'm saying?

Mm-hmm.

I do.

allows them to get these benefits faster because I want everybody to have benefits is what you know what I'm saying? But I want

I know what

you're trying to say, but in a specific realm there perhaps

It can't be equitable

to everybody. It should be within these categories because these individuals get lost in the system, I think. I think they just get lost. They become a number that never get called.

It gets a Yeah.

Yeah.

Yeah, no, I see w I I definitely see that point. I think it gets a little you get a little bit, you know, sketchy when it comes to when you're we're trying to say this group gets more should get more than this kind of group, but I do understand exactly what you're saying. I won't put this in but it's a it's a good point to be made. I won't put it in but I think it's still a good point that you're making. But

Yeah. And I don't I don't

it

is a good I'm like, I don't think one group gets more than the other. I just think have a program that's just for these people, these medically complex. Because when you say disabled, that's like very broad. We all could be disabled. It's very broad. And so when you say this if you're disabled, you're just in this broad category and you become a number and your number may never get called.

Yes, that prioritizes. Yes.

So very broad absolutely. Yes. Absolutely. Mm-hmm.

You know, so I just think that the system could be set forth better if you kind of specify how you like what defines this, you know, disability, you know, because we're just because people that might not be as medically complex are getting this great service that this other family is waiting for, you know. So I think it's just our our society's skewed in that.

Mm-hmm. Yeah, yeah.

I hear.

in that concept that we just like I want everybody to have like live and have things but it's just like Texas is bad though when it comes to this. Texas bad no.

Yeah, Texas is bad. They're not one of the better states for sure. So ⁓

Very frustrating.

have you ever Yeah. Have you ever thought of like leaving Texas because of it? Or no?

I don't know.

This is between you

and I. I'm not gonna put this on. I'm just curious.

Maybe someday I'm gonna like Montana or something.

Yeah.

But

Texas is so overly populated that I mean they just cannot fund anything. You know, it's like like Rachel got food stamps. Well, I don't need food stamps, but she qualified for it when I applied for the Medicaid and then her social her social security so she was getting like three hundred dollars a month. It helps me because I have to buy her foods, you know, that I puree. so that saves me, I guess, three hundred dollars a month. But

Her SSI went up because of the because of our economy, you know, so they had because of the cost of inflation, they wrote their paychecks went up five percent. So it put her over the cap, and now she's down to twenty dollars a month for food stamps So that's where our system is skewed because you're just like taking it off of a piece of paper of who Rachel is, even though I've like

my goodness.

Yeah. Yeah.

sent you the data of like she's this complex individual who has no concept of money or depends on me, you know, and they just look at the paper and they're like, denied, denied. Nope.

Yeah. Denied,

yeah. And and it's just kind of common historical that the people that don't know are the ones making the decisions, right? These are the people that aren't connected to the world. And ⁓ it's very, very frustrating. So my my thought is if people are hearing this to d in the are listening if people are start again. If people are listening to this episode and they're moved by your story and your desire to make this happen because

Okay.

No.

Yeah. Yeah.

Again, it could be a small thing that expands and grows over time and it could be a template for other respite areas that even learn from what you're doing and open up in their own states and and counties and things like that. If you could afford five dollars, we have this GoFundMe that you can contribute to the GoFundMe, even five dollars. Yes. I was gonna

One dollar from a thousand people

I was gonna say a dollar

would make a difference.

would be fine. Exactly, exactly. So like even a dollar would be fantastic. Something to help move this along because again, sure.

it's it's it's one place but it's one place that could expand and grow and become influential and become bigger and help more people because yes the system is against the community there's no question about it and so this is this is a way for us to speak out and if there are medical experts out there that have more to contribute also and if there's people in your area of of Van Texas and in the vicinity who are interested in helping you out please reach out to Sarah because

we can make this thing grow and we can make something really, really important come to life here. And and I just, you know, Sarah's passion is so obvious and I know there's other people out there that are just like Sarah that would love to make something like this happen. So speak up like Sarah says, there there's no no reason not to speak up anymore. Nothing to be afraid of.

Can't be afraid. Also like

Yeah, what was I gonna say?

something good I was gonna say. Yeah. It's like one of those things where that can just win out your mind.

Fine. Good, I'm I got time.

I hear ya. It's all right, take a minute.

If I had if I had more time in my life, Mark, I would be an advocate and I would go like have make some key policy changes, you know, and system changes if I had the time. I totally would do that because if we could, you know, dedicate funding streams for these community based and in-home respite services, we could expand Medicaid waiver capacities and improve reimbursement rates like

to encourage more providers to offer respite care or these you know you know resources for their people and if you simplify the eligibility requirements reduce the administrative barriers we could allow these services quickly and less burden and i would totally be an advocate in congress and all these things i would i but i just have no time because when you you have to shift it

Time. So let's speak to our pal

let's speak to our politicians. Yeah.

Well yeah, we speak to our politicians because this

is shifting. You know, we need to make this like not crisis based. It needs to be a reactive system to a proactive system. And we need sustained support for these people's disability. Like I'm all for it. I need my like little picket sign and I would go. I would we do need advocates for it because I feel like if we're quiet and I wish like I I mean I I shouldn't

Mm, mm-hmm. Absolutely.

I should say it's an excuse to say I don't have time. I could try to make time take radio.

You do have a lot

on your plate and at as do other families in your position, but to be able to to even do online getting together and supporting each other and coming up with ideas and there will be people who will have some of that extra time that can kind of carry your message while you while you can.

That's that's where you know

those people that if you can support the my mission and what I am for and what I want to do, then those will be the people that will advocate and fund you. That's how you get your name out there. You just have to create awareness. It's like repetitive, just putting your name out there. But the more people that hook hook on and seek your mission and and feel compelled, then they can advocate for you.

Those are the people I need. Whether that's through funding, but also like just advocate for this because this is huge. It's huge.

Mm-hmm. Yeah.

Well, you are a great ambassador for this and I think that people I hope people pick up on your lead, but I think that you know, you've spoken to a lot of people today and hopefully you've touched their hearts and potentially even their wallets. But really just to understand what your goal is, it's it's tremendous and

Thanks for your time today. It was so great to have you back on and follow up because I really think this was really even such a a more broadly discussed topic today than we even touched upon last time. And I really think it went deep went deep on this one.

Yeah, we went we went far. Well and

let people can know, like I have a website. There's

Well I was gonna ask,

so how do people reach out to you? Right.

There's a website and we have a like a communication spot where they can send a message on on the website and I I get it. And then our email address is also on there. People can always send an email. There's a donation tab on there. So simple it's simple. I'm not looking for like luxury. ⁓

Yeah.

Mm-hmm.

Because it's this is not like supposed to be this luxurious facility. It's just a simple like I'm I'm a simple farm girl here. I'm just looking for a simple house with like I'll just give you lots of love. But it it gives them an idea of a layout though. So they can they and then it has information about, you know, there's just good information on the donation area that just explains more about like what what that money would be used for.

Mm-hmm.

Okay, fantastic. And people can donate there and they can also donate the GoFundMe, which I will post in the show notes as well.

Or yeah, however, or if you know grant opportunities or anything else out there. Or anybody that wants to sponsor. Also Rachel loves Cheesecake, so Cheesecake Factory, please sponsor Rachel.

It's terrible. And you're on Instagram and Facebook as well?

Instagram and Facebook. There's a I have my own personal one but I'm connected to Ray's Respite Care which has its own site and we just interconnect. And I try to stay up to date with that, but again it's me, myself and I. So

Yes, yes. The one woman wrecking crew. Sarah, thanks so much. You're amazing.

Yeah.

You're amazing. Thank you for having me.

my pleasure. My pleasure. We're gonna get this done. We're gonna get this done. Yes. All right, you have a great day. I'll talk to you soon. Okay, stay on, stay on. Okay.

I love it. We're a team.

Okay. Okay.