The Advocacy Engine: How PACE Equips Caregivers to Navigate the System

The Advocacy Engine: How PACE Equips Caregivers to Navigate the System

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Hi everyone, welcome to another episode of CareSmartZ360 On Air, a Home Care Podcast. My name is Carolina Gonzaga and I’m a Sales Executive here at CareSmartz360. Today we’re talking to someone, oh, who is so passionate, Tiffany Matthews, our special guest today, is the powerhouse behind PACE, Patient Advocacy and Care Empowerment, a movement turning overwhelmed families into powerful partners in care. She’s a former healthcare insider, lifelong social worker, and a tireless educator on a

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mission to flip the script for patients and caregivers and the workplaces where caregivers work. The advocacy engine, how PACE equips caregivers to navigate the system. She’s going to talk to us about all things caregiving with a special insight into business perspectives as well. Welcome to the podcast, Tiffany. >> Hi. How are you today? >> Well, you and me with my sweater and your sweater and this Christmas tree, we are ready for the holidays, girl. >> We are rocking it, aren’t we?

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>> At least we look like we are. Am I right? >> Yes, definitely. I’m so happy that you could join. It’s a busy time of year, I know. And so, we appreciate you joining the podcast today. And we’re going to be talking about something called PACE, which is patient advocacy and caregiver empowerment. And we want to learn more about that. But what I really want to do is start out by finding out a little bit about you, kind of where you came from, and what the experiences have been that

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have led you to create PACE. And pretty much your mission that you live every day as our healthcare bff. So, if you wouldn’t mind just giving us a picture of where you came from and what led you here. >> Well, um, even as a child, I always wanted to help people. So, you know, that was something that I’ve always tried to do and even in college, I went to school for, you know, social work and psychology and those are both helping professions. I just wanted to find my way to, you know, help others. So I did

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it through social work. Um I got my bachelor’s in 95 in social work and psychology and um a masters in journalism from tempo in 2003. I know that’s a big switch but um the journalism it’s called range. We like >> yes and you must have it. You must have it these days. Um but the journalism actually helps me with documentation and social work writing. So, um, after doing all of that for a while, um, I got a call. My grandmother was very gravely ill and turned it, it turned out she was, uh, in her final

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chapter, and it was a 16-month long just horrible walk. You know, this is my grandmother. She was a mother to me, you know, so that’s how much she means to me. you know, she fixed up my boo boos and fed me when I was sick. >> But at her end, she was having a negative time in the health care system. And my Graham had six kids. Five were local, but one had the lion share of it all, and that was my mother. And in the process of caring for Graham, I watched my mother just break down. She went from

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this stoic boomer, you know, kind of unemotional la crying every day. I couldn’t believe it. It was physically painful for me to watch >> all of this happening. So, um, I had to advocate on Graham’s deathbed for better treatment for her. I had to get with the social worker who’s done the same job as me. Um, but at that point I was in hospital administration and I told her, “I know what kind of game you’re playing trying to put my grandmother out before she’s ready.” I said, “And if you do

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I’ll be there tomorrow off my new job with my new infant with the Joint Commission, the Department of Health, and the Center for Medicare and Medicaid. If that is what you’d like, I’ll see you tomorrow.” And you put her out today, >> right? >> Yes. But I didn’t realize I could do that until I put all the jobs before I had them together. It didn’t even come to me until I did that for her. I was like, “Wait a minute. I am an advocate. I’m a patient advocate.” And I loved that

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idea. So, I got my board certification in it for six years. But, uh, they didn’t put her out. And you know, my mother had called me that day saying she was going to jump out of the first window she saw. That’s how frustrating and hurtful and painful it could be, you know. So, they made me realize I am an advocate. And it also made me realize after Graham was gone, that angry energy I had, I had to do something with. I said, “How many other people need this help? How many other people are out there just not

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knowing what’s happening? And you know, some people don’t even call themselves a caregiver and they need to because that will put them in the mind frame to get the help they need. You’re not just a good child or a good grandchild or a great spouse or friend. You are a caregiver if you are helping someone at home. If you’re helping someone function at home, you are a caregiver. Even if it’s just taking mom out once a week to the store in the bank, >> whether it’s that or whether you are

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there for 24-hour total care, Hoyer lift, everything. There’s levels to caregiving, but it’s all still caregiving. And every one of them needs help. There’s grief every day. There’s care. You’ve got to care for someone every day. And I know what it’s like to watch someone disintegrate into a shell of themselves. I watched it happen with my grandmother. She was so strong and beautiful and I just admired her and then at the end it was so sad and you know I get choked up even now

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thinking about it. >> Absolutely. You had told me about a work experience you had that was pivotal in you kind of reaching this eureka moment of how I mean what are our lives right they’re family errands taking the kids to school caring for your parents and it’s I mean we spend most of our time at work that’s why we meet some of our best friends at work tell me about that experience that you told me about um where you had one boss that made a light bulb go off for you >> um it was during Graham’s final chapter.

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And uh me and my daughter lived 250 miles from Graham. Um, I lived in Buffalo. She was in the Albany area in upstate New York. And I got a call and my mom said, “I think you better get here.” So I had known Graham was very ill, you know, for 15 months before this. >> Um and my mother said, you know, it’s time. So, I dropped everything and you know, I said, “I got to go. I got to get my kid. I got to go.” But I knew I had to talk to my boss first. And my boss was a great guy. Um, his name was Dr. Gary

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Bryce. I love him to this day. And, you know, it’s been almost 20 years since I worked for him, but I never forgot his name. You want to know why? Because this is how he treated me when I had to go see my grand. She was sick before and I had to leave once and I came back but I didn’t want to leave again. This was a new job and I loved it. I loved my job. But when it comes to caregiving and family employers need to understand this. Caregiving is going to win every single time. People will leave. People

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will cut hours to do what they have to do. So, I went into my boss and I said, “Gary, you know, you’ve known my grandmother is sick. She’s I think this is the time she’s going to go.” And um he said, he said, “You know what? That newsletter you’re working on or the emails you’re working on, yeah, they’ll forget them next week. But are you going to spend this time with your grandmother before she goes?” He said, “You’ll never forget that.” >> Yeah.

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>> He said, “Go, go.” That’s all he said. And if every employer looked that way, every employer just found a way to manage it. The retention would go down, the absenteeism would go down, the presenteeism and lack of focus at work would go down. And when I got back after everything was over and I was angry and I was hurt, I had a meeting with him and I said, “Now that you have let me do what I need to do with my family, I will bust my behind for you. >> You let me be where I needed to be at a

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vulnerable, vulnerable time. I needed to be there and you allowed that. You carried this department all by yourself to let me have what I needed in this life. I’m going to bust my ass for you, pal. >> Yeah. You know what? And I remember Sean Rashard Richard, that’s my boss that always would say, “Hey, I’ve got you. If this is happening in your life, then you have to drop everything and go.” And you know, the reason why we remember these people is because they’re special,

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right? >> That’s right. >> But it seems like what you’re looking to do is to find almost the market value of finding those caregivers. Well, encouraging them to self-identify, having employers, businesses know that they’re there and finding ways to support them so that the opportunity is there for them to experience what they’re experiencing, but show up at work in the best way they can and it will make them more loyal. So, tell me about the experience of talking to

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businesses. How is it going? This is these are the hard cutting questions now. >> Oh yes. Um let me take a sip of water before I get in >> Okay. In all honesty, and I’ve been um at this a while. I’ve been at this for a while. Um, I think in all the companies I’ve approached, maybe 3% of them are listening. >> That’s a low percentage. >> Absolutely. Absolutely. You’ve got um companies and and we’ll never know how many companies are really out there. There could be, you know, companies we

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I don’t know about thousands and thousands of people, you know, that are, you know, major hubs in another part of the country. You know, I’m familiar with Philadelphia because that’s where I am, but um sorry, that was my phone. Um, I’m familiar with Philadelphia and these um what’s going on in this part of the country, but you know, I’ve advertised, I’ve done social media campaigns, I’ve done live streams, and it just seems like companies really don’t maybe they they know and don’t want to

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address it yet. Maybe it’s not a priority, but overall they’re not really hearing the crisis that caregiving brings. They’re not really listening to it. They don’t understand everything that’s wrapped up into it. And many companies don’t even measure >> caregiving losses. So, they don’t know. >> You’ve been able to do that, right? You’ve been able to come up with numbers. Can you give me an example of what caregiving uh the cost of caregiving could lose a company

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potentially? >> Absolutely. First and foremost, there are plenty of reports, studies, um and other things out there to support what I’m saying. On average, $5,600 per year per employee, not just the caregiving employees, every employee is what employers lose due to productivity losses, absenteeism, and presenteeism. Now since health care I mean since caregiving is difficult on the body the mind and the spirit >> okay they need to be able to you know address that and how does that happen increased

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health care costs yes caregiving is noble but it is stressful and frustrating as well it affects your mental physical emotional health there are stats that there are caregivers that pass away before the people that they’re caring for. >> Okay. Yeah. >> That’s obscenely sad to me. So when you think about the fact that this is a widespread challenge that is only going to get bigger and you you know find that the kind of interest or the open ears of the businesses are only

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3%. Then would you say that this is why you have kind of two streams that I recognize with pace which is yes talk to the businesses but also talk to the caregivers themselves. Is that a more effective path today? >> To tell my husband, you know, I tried the straight B to C before. The issue with that is caregivers don’t have money. >> Yeah. >> To do even I and I mean even $30. You know, I’ve put out classes out there for $17 just to get interest and it doesn’t

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work. Call Sabrina. um it doesn’t work. So, I had to go back to the lab and figure out how I can do something and make them not pay for anything. They’re already putting out almost $8,000 a year more just on caregiving and they’re not getting any support back. So, I was like, these companies should know the value. They all have caregivers. So, I want to go to them with my four-part process. The four-part process I have is to discover, quantify, support, and recover. Discover, quantify,

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support, and recover. First step, discover who your caregivers are in your workforce. I have audits to go in and be able to determine who your caregivers are. and how much they are affecting you. Caregiving issues, health care issues, benefit issues. I go in with surveys. I also will go over benefits and policies to make sure that they’re friendly to caregivers. If not, I’ll suggest some more that are and work with HR departments and people ops departments to make sure that their people are taken

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care of, you know. And as far as BTOC, you know, I, you know, I tell caregivers directly, you deserve help at work. You deserve benefits at work. Ask for them. You don’t have to say you’re a caregiver. Say you’re asking for someone you spoke to who is a caregiver. You don’t have to tell them anything. Just ask. If enough people start asking, HR will look into it. So, they’ve got I. I’m trying to put the power in the caregiver’s hands. Excuse me. I’m trying to put the power in the

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caregivers hands so that they’re able to do what they need to do because employers aren’t listening. And health care even though they have regulations from CMS, the Joint Commission, AHRQ to interact with caregivers. Yeah, they do. But it’s on a passive level and not an active level. When they were trying to send my grandmother home with a TRA >> and she was she had just had surgery, she had filled up with fluid so badly they had to close her with mesh and they were trying to send her home

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that way with no training. They were trying to send her home to die. >> Mhm. >> So, we weren’t having that. A lot of places don’t even offer to train you on that stuff. Here’s the discharge planning. Bye-bye. And once they sign it, it’s over. The hospital doesn’t have to help anymore. I want caregivers to know, don’t sign anything until you have what you need from them. Do not sign a thing until you have what you need from the social worker. That means help at home,

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appointments, medication, durable medical equipment, oxygen if needed. I was a discharge planner for a long time, so I know how that game works, too. Yes. >> So, I’m trying to take all of this knowledge and take it to companies and say, “Hey, caregiving is a workforce crisis, a public health crisis, and a personal crisis to that caregiver. It’s rough. You could be a caregiver full-time and be exhausted every single day, >> but they’re not managing, you know, a full-time job as well and whatever.”

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>> Yeah, >> absolutely. Who wants to work after caregiving? My god. Yeah. So that’s why >> Oh, go ahead. >> Oh, I’m sorry. Um, that’s why I wanted to get them help at work because not only will that help them stay, it’ll help them be an advocate for that job. I’ve been at jobs before where I would recommend them to a friend. Hey, you know, the pay is okay, but the benefits are awesome. You really need to, you know, look into it. I’ve taken jobs before simply on benefits because they

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were going to take care of me and my daughter and you know that kind of thing. If you’re someplace at a job where you know they have your back, they’ll take care of you. There are systems if you get into a crisis turnover would drop immensely. Retention would go up immensely because you’re taking care of their needs as well. Caregivers need help. >> Yeah. So, with the patient advocacy and caregiver empowerment, you mentioned that you’ve, you know, hosted some um some sessions where you could empower or

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try to help. And I know money can be an issue for caregivers. So, you’ve tried to make them as affordable as possible. What are you know you mentioned already some tips on and I’ve experienced this where mom’s getting discharged and my father has no tools of how to for aftercare so I I heard that piece stuck out to me that you’re teaching caregivers to be advocates within the health care system so that they don’t get pushed out because you know the game of discharge right >> um what are some of the other also how

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to go to workplaces and ask for what you need even just mentioning it will build, you know, hopefully some momentum towards that discussion. Can you mention any other pieces of your training that you offer that that come to mind as, you know, quick takeaways that that a caregiver might benefit from that they might not know? >> I think with caregivers, they’re so overwhelmed that their mind is scattered and you can’t really learn that way. I want to get them in a state

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even in a mindset to say, “Hey, you’re powerful, too. This boat doesn’t go without you. So, you need self-care. So, you need to work things out at work.” Go to HR, ask them. As I said, you don’t need to reveal that you’re a caregiver. Say you spoke with another employee and they’re a caregiver. And I got concerned because hey, my mom’s getting older. You know, no one has to reveal their I guess caregiver status. I think one of one fast shift that I would ask for caregivers is to

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not carry everything up here. Journaling helps with the emotional documentation of your caregiving or healthcare interactions and will help you stay more organized. I tell caregivers you’re already overwhelmed. Do not rely on your memory >> to understand what you know to, you know, understand and try to relate what’s um related to what’s going on. There’s a stat out there that says a half hour after our doctor’s appointment, we forget 50 to 80% of what was said. Why wouldn’t a

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caregiver forget? >> Yeah. Well, >> and they’ve already got a ton of stuff on their brain. Well, and don’t you and just the thought of that is if every caregiver did document what they do even what they do as the way that a paid caregiver would. >> Mhm. >> There’d be a whole lot of evidence to say like there’s a lot of work being done, unpaid work being done here. >> Absolutely.$600 billion dollars worth that holds up our health care system, our long-term care system, our very

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economy. If all I say this all the time to people, if all caregivers quit today, we would be up that proverbial creek with no paddle. >> Yeah. >> Health care would collapse. Long-term care would collapse, which would lead to Social Security, Medicare, Medicaid because they’re going to stress those other systems. It’s going to break down home care because it’s going to stress that system. They don’t. But employers in healthcare don’t see that value. They don’t. >> Yeah.

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>> And hopefully that changes. It will need to. >> Right. So I tell caregivers, stop carrying everything up here because there’s already enough going on with grief and emotion. Document your caregiving. What happened today? Were there any symptoms today? Was there a fever? Was there an appointment? What happened today? And if you document your health care, that gives you a line to connect all your appointments together. It gives you a line to connect all your, you know, your caregiving and what’s happening to

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the care in their healthcare journey. That way you don’t have to keep it up here when another doctor needs to know what’s going on because you’ll forget important pieces. So that you know I I need caregivers to stop car carrying everything up here and I need caregivers to call themselves caregivers to get into the mindset to get the help that they need really need. >> You’re more than a good son or a good daughter or a good spouse. You’re a caregiver if you’re helping.

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>> Yeah, absolutely. and in your workings, in your conversations, all of the ways that you’ve shown up for caregivers, um, have you heard stories of, you know, clear mistreatment in the workplace, bias, um, ch Yeah. And what can you mean, you can’t go in there and change that company even as much as you want to advocate. What is some of the advice that you’ve given or or even a story of success or a way that a caregiver can empower themselves in a situation like that? Well, another one thing that was painful

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to watch while my uh mother was caring for my grandmother, you know, she’d have to leave the job a lot. Leave early, come in late, go out in the middle of the day, come back, try to stretch her hours, try to take care of the job and Graham at the same time. And it’s just basically trying to juggle two full-time jobs. >> Yeah, >> that’s what it is, you know. And as I said to you before, when it comes to employment versus caregiving, caregiving is going to win every single time. These

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employers need to get ready for that. But if they had systems in place to take care of their caregivers, flex time, remote work, paid leave, days off, more personal days, those kinds of things, then caregivers would stay. There’d be no reason to leave because they’re taken care of at work. And it could be a matter of simple things. When I said earlier my mantra with companies is discover, quantify, support and recover. I help them discover who their caregivers are. Then we quantify them

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monetarily. Then we figure out strategies to support them at work. If it is the flex time, if it is the paid leave, better benefits, um you know, different services that I can provide. and then they’ll recover dollars that are lost on caregiving every year. So that’s my process in working with them. But uh you know there are companies that have that listen um there are several universities we’ve got CBS on there Alliance Life a lot of the insurance companies are listening but they kind of get it more

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>> well they’re seeing the effect yeah than say an engineering company or you know uh uh you know what I mean? >> So I know companies really genuinely need to see that this is a workforce crisis. It’s a personal crisis. It’s a public health crisis. And they’re going, they’re already affected whether they’re measuring it or not. Like I said, 5600 per employee per year, 8% increase in health care costs, and who knows what else, but they can address it. You know what I mean? And I want to

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help them address it so I can help not only the caregiver, but the patient they love and care for. Cuz I’m still a patient advocate at heart. Absolutely. >> So, helping the caregiver helps the patient automatically and helps the company if they want that help. >> Yeah, absolutely. And um my question for you now to, you know, close things off is is there a way for either a curious company or even a caregiver that is feeling a spark to reach out to you and uh learn more about what PACE offers and

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what you offer. Where’s what’s the best way for them to find you? >> Absolutely. Um you can always visit my website uh pacelovescaregivers.com. Again, pacelovescaregivers.com. There, if you are interested in what I’m doing, you can set up a caregiver strategy session right on my website. My email is also on there if you, you know, have a direct question. Um you can always contact me that way. Um, let’s see what else. Um if you need to get in touch with me directly uh my

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The telephone number is 267 625 0600. So call me. Um, you know, I pray I really do pray that more employers and companies listen. No matter what your size, >> whether you’ve got a hundred people or 40,000, you are being affected by caregiving. >> Absolutely. >> Let’s encourage these employers to listen. Caregivers also, I believe in putting the power in your hands. There are professionals out here trying to help you. We are trying to help you. I promise. There are so many people in my

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network trying to help caregivers. Just hang in there for us. We’re coming. >> Yes, >> we’re coming. >> Absolutely. And caregivers, don’t forget to call yourself a caregiver and know that you are one and you’re not just a good daughter or a good son. I love that. I’m going to take that with me. I thank you so much for your passion. You literally gave us your phone number. Tiffany, you are absolutely our healthcare bff. So, thank you for your time today. >> I’m so glad. I’m so glad and I hope we

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I can do this again. Maybe we can continue talking about, you know, the effects of caregivers and working and so many other things. I’d be happy to. I’m so honored you asked me. Thank you. Thank you. Oh my god. That’s how you know it’s Friday. Thank you so much. >> Thank you.