Caregiver, advocate, speaker and Founder of Caregivers for Compromise, Mary Daniel, discusses the positive impact that essential caregivers can have on a community’s staffing shortage.
We discuss advocacy, companionship, and the importance of family participation in senior living.
Listen to Mary on Ep. 177.Read the Spring Issue of the BTG Magazine here.
Welcome to Bridge the Gap podcast, the senior living podcast with Josh and Lucas. We have a great friend and returning guest to the program. We have Mary Daniel, she’s a caregiver advocate and a speaker. Welcome back to Bridge the Gap.
Thank you so much. I’m happy to be back with you guys today.
It’s so good to see you. We always have the best conversations to our listeners. We just had like a 40 minute pre conversation that we wished we would’ve recorded, but we’re going to try to dive into some of these big, big topics. You know, Mary you are a fascinating person. You came to our VOP Ignite Experience last year made a lot of interesting connections, and we love your approach to very difficult topics. We’re talking about Bridging the Gap between families and residents and the industry that we love and serve and represent in so many different ways here at Bridge, the Gap, which are the providers and the operators in this industry. And during very complicated times like COVID and other things, and I’m sure we’ll be faced with many more, it is never been more and important for this conversation to happen and for the walls to come down for bridges to be built between provider and consumer, and we don’t know of anybody better than you Mary, to do that. So with that kind of stage set, talk to us about what you are working on right now, as it pertains to your caregivers for compromise the various issues around lockdowns. What is going on in your world right now?
Mary Daniel 02:35
Our group, we have a national group, Caregivers for Compromise with 14,000 followers on Facebook. And then we actually have a group in every single state. So we’re really focused on three things I think. One is federal legislation, federal visitation legislation, meaning we are trying to get essential caregiver, designation laws in place, so that if and when this ever happens again, we will never be isolated from or separated from our loved ones. So we have a federal bill, HR37 33, that is in Congress right now. Our whole groups, every state, and the national group are all working to get co-sponsors of that bill working to get a Senate bill also, I met with Marco Rubio’s office last week to talk about that. So that is number one. We need federal legislation that would impact all facilities that take federal dollars, Medicare, Medicaid dollars, but it trickles down to the states as well.
Mary Daniel 03:34
So my husband is in a memory care center, that’s a self pay and he would not be affected. They do not take federal dollars. So we’re gonna need a state law in Florida in all states to be sure that we have every facility type of facility covered. In Florida right now ,we do have bills that are making their way through the house and the Senate. I’m headed to Tallahassee in just a call days to testify. The governor, thank goodness is very, very strongly behind these bills. I mean, it’s been interesting because we can talk a little bit about the associations, he has basically, told the associations that – my understanding – is that he has basically told the associations that this will happen, so they need to jump on board if they want to be a part of it. Because he is pushing through language and thankfully his office has been in contact with me while I’m working with them on specific language with a couple other legislators.
Mary Daniel 04:31
So we already have laws that have passed. Texas is a perfect example. My caregiver, Texas Caregivers for Compromise group there passed a law that went into effect last July and in November, the voters approved prop six, a constitutional amendment that gives every resident long term care, a constitutional right to an essential caregiver, meaning that they will never, ever be separated if we have a lockdown again. We are going to be doing that in Florida as well. So that’s really where our focus is getting rules, laws to keep us from being locked out again. And then I’ll say the third part would be getting us in where places are locking us out today. There are facilities in the United States. I know right now in Florida, there are facilities that have shut their doors that are not letting people in because they have a COVID case. And that is not what the law says that they do, that they’re allowed to do. And so we have to fight with them and we are their ally in getting to the right people in ACA for example, of the agency for healthcare administration in Florida, to get those doors open back up,
Wow, Mary, that is a mouthful of information. We could spend hours talking about this and I’ll just point out, even on this podcast, I’m a provider, Lucas is a partner to the industry. You’re a consumer patient resident-advocate. What better bridge right here you’ve got represented who can solve this problem, the groups that need to come together on this. I think it’s just so interesting to me. I was listening to a webinar, just yesterday of some of the probably brightest thought leaders from operators to marketing and sales people across the industry, all across the country. And they were talking, even though it was geared towards marketing and sales, kind of the theme was talking about how we to make our communities, make our programs, make our services, make our operations more driven to what the consumer, what the family, what the patient needs, wants, wishes.
You hear this on all these panels at all of these industry associational events at the high level, at the state level. But when it comes to things like this, I’ve heard you say multiple times when you approach the industry professionals, when you approach the associations with this messaging, you really don’t get anywhere. So I’m wondering at what point is our industry leadership going to actually come to the table and they’re talking points that sounds so great when they’re on the, the panel with a bunch of cronies talking about it, when they’re actually gonna do something about it and let their actions catch up with the words that they’re saying, because it sounds really good. So you’re gonna get me on a soapbox here, but I would like to know because for the ignorant Southern boy, as I have been called many times through the years, when I hear you still to this day saying you’re being confronted, families are being confronted with these lockdowns across the country, in your organization, and I still find that hard to believe. So this is obviously not law or regulation that’s forcing this, so I’m curious, what are you as families as consumers, What are the reasoning that you’re being given by these providers help us out, help us understand.
Mary Daniel 08:30
It’s all about the safety of the resident. They’re protecting my husband. Now let me, I shouldn’t say that because it’s making it out to be as if our facility is like that. I am completely blessed to have Rose Castle as where my husband lives, without Rose Castle, without their company, ALG Senior out of North Carolina, none of this would’ve ever happened. I was offered a job by them as the dishwasher and I got in to see him and the viral story. And so they really, without that offer, you know, I wouldn’t be sitting here talking to you today and so many people would not be affected by the work of Caregivers for Compromise. So not in my facility, but I do use them as an example because as much as the corporate office can accept us and really they’re using their their belief in the essential caregiver designation in their marketing, which is very, very smart.
Mary Daniel 09:26
They’re telling people that we want you in. We believe in this legislation, we support this legislation. I think that’s brilliant in that I want to put my husband somewhere where I know that they’re going to welcome me in or going to fight for my rights to be in there in the safest way possible. So they’re telling us across the board that they know better. I mean, we’ve really had people that say, we know better than you on how to protect your loved one. I mean it’s really an interesting dynamic. And certainly as the time went on to see the reasons why we should be let back in and us having to go and fight, even with the legislation or the orders, the CMS orders or the CDC orders in hand saying, “you have to let us in.
Mary Daniel 10:13
It says so right here on this piece of paper.” They still will fight us because they believe they know better. Now in my personal belief, what I have experienced and what I have seen is it’s about power. It’s about now knowing they can lock the doors and there’s nothing that we can do about it at least for a while. It’ll take a while to file a complaint, to get somebody out there to, to get them opened back up. And I think part of that is hiding what’s behind those closed doors. Hiding no staff. Hiding poor conditions because of no staff. We just had an instant last last week where a woman in Bradenton was not able to get in to see her father. And she went to see him every say single day when she finally got in, because we did a news story.
Mary Daniel 11:00
I had a reporter down there who did a news story on it. They finally got in. The conditions were unbelievable. All of his clothes covered in feces. It was a mess. Now the day after that ACA was coming to do a inspection, and she said there was a cleaning crew in there scrubbing the entire facility down. So everybody’s not like this. I risk when we start talking about this, that I’m portraying the industry in a way, you know, in a very negative light, everyone is not like this. And that’s the beauty of this. That’s why we want to highlight those companies that are doing this right and are understanding, need the need for families to be involved, versus the old school, “we’ll tell you what to do. We’ll tell you when you can walk in the door, and we now have the power to do it.”
Mary Daniel 11:47
I’ll give you another example over Thanksgiving, a facility in New Smyrna Beach, closed the doors over Thanksgiving, slam them shut, put every resident in their room, 24-7, including Thanksgiving day, for an outbreak of Scabies in the facility. Okay. That’s never been done before. But we’re taking something that was done because of COVID and this and this catastrophe of COVID, and we’re now putting it into…we always said it’s gonna be the flu. It’s gonna be the next variant. We always knew it was coming again. But here it is in, in November, an outbreak of Scabies that doesn’t require an absolute shutdown of the facility with no visitation from anyone. But that’s that power. They know they can do it. They know they have the ability to do it. One of our arguments is, and it’s one of the things I’ve been talking to, not only politicians, but I met with the head of ACA not long ago. This is a huge, devastating place to be.
Mary Daniel 12:49
I mean, my husband we’re right at the nine-year anniversary of him being not diagnosed with Alzheimer’s, he’s still a young man. He’s 68 years old. He was 59 when he was diagnosed. It is devastating. I have never experienced anything like this in my entire life. I lost my father when I was 17. My mother to pancreatic cancer when I was 29, this is so much worse because it’s so sad. It’s the saddest thing I’ve ever experienced in my life, but yet I still have to go and fight. And again, not me personally, but that people like me have to take on that burden and fight to get in this far along into this process is at absolutely inexcusable.
I totally agree with you. I want to point out a couple of things. So from the provider standpoint, I think it’s very critical that you, you said this is not an issue that every provider is doing. We certainly don’t want to paint the image that all providers are locking people out and that, but it is happening. Also on the flip side, there’s always two sides to every story, so to speak. I think a lot of times consumer families don’t approach the providers in the manner that you and your organization do because, and what I mean by that is, I don’t think what you guys, from what I have heard in your organization have ever said, you want a free all, let everybody come in. You guys actually perfectly willing and want to follow whatever safety protocols need to be in place to protect your loved ones in the community.
And actually, you’re an advocate for that. But what you are wanting is to be a partner in that. And so to me, one of the points that you highlighted is labor shortage, labor crisis. That is definitely very real in our industry, very prevalent. And what people often don’t talk about is that actually was happening prior to COVID. COVID has greatly challenged that labor crisis, right? And I will go on without getting in too much detail, because I could talk all day about it. And rant, if you will, about the self-inflicting wounds that providers are choosing to do, not because of regulatory requirements at the federal or state level, but they are actually creating policies that are only hurting themselves when it relates to labor. And we could talk all day about that, but one of the wonderful things that I think there’s a great opportunity, your organization is presenting, is how the essential caregiver, how that family, how that resident representative that’s deemed essential can come alongside and actually you could probably help a lot of this labor crisis. Talk to us about how you see that aspect, actually helping providers during this labor crisis, how we can partner with the families to help this?
Mary Daniel 16:23
I think one of the ways is to have a conversation. Let’s be honest with each other about what is going on. If I know that, I mean, I talk to our group all the time. First off, let me say this too. Our group is Called Caregivers for Compromise. For a reason we want, we will compromise. We’re not saying throw the doors open. We’re not, I mean, I told at the very beginning, the first time I ever met with governor DeSantis, I said to him, “I will wear a hazmat suit.” If that’s what it takes, I’ll wear a hazmat suit. I don’t care. I’ll do whatever we have to do. So we absolutely want to compromise. And one of the other things we teach our group is educate yourself so that you can educate them. We need to know what’s going on. We need to know what the rules are.
Mary Daniel 17:04
When you are educated, you advocate from an a position of confidence. You understand the rules, you understand what we’re trying to do. You understand that safety is a very – we have a vested interest in keeping our family safe. I mean, when I started going in as a dishwasher, can you imagine? I said, I mean, “I have to be so careful. I cannot be the person to bring the virus into this facility.” And we still, I don’t want be the person who harms anyone, not only my husband, but any other resident there. How tragic would that be? So we have a tendency at the very, just in the very lower level, of we provide, when I was in with the dishwasher, it was easy. I saw people not wearing their mask. I saw people not following the safety protocols and you know why that was? They were fatigued.
Mary Daniel 17:52
They’ve been in this, in the trenches for all of this time for six months and they are fatigued. But when you have a family member there, when they saw me, they would pull their mask up. When I was there, I am going to be accountable to them and they are going to be accountable to me. We will do better at those measures when our intent is perfectly good, but you know what? Everybody gets tired. We’re tired of wearing this mask. We’re tired of doing these things, but when we know that we’re all working together to do it, it makes a difference that we all can join together and be responsible to each other. When I go in and see Steve, every single evening at 5:30, they’re done, I’ve got him. We go to his room, we watch television, I get him ready for bed.
Mary Daniel 18:37
When I leave every night, he’s asleep. They can cross him off their list. They don’t have to be there and be sure he’s down and his teeth are brushed and all of those sorts of things, I’m there to help them, and I want to them. So I would very much like a discussion. Can we have a grown-up discussion on, “look, guys, we’ve got to have, we’ve got a shortage of staff, and this is what we’re doing to try to work around that. And these are how we think this is going to be, and this is how this works. Because if we have that knowledge, and their trust us with that knowledge, then we can help them and work together with them. Maybe we can even come in and volunteer to do some activities one afternoon with them because they don’t have anybody doing that at the moment.
Mary Daniel 19:24
We can come together and do it together. Instead of being treated as if we can’t share this information with you, we don’t trust you with this information. We want to do all of this behind closed doors. You are creating that environment of us versus them. And we think it’s time that we all come together and we work on solutions together because then we can have some ownership of it. If we’re part of how this staffing is going, and if we’re part of, “Hey, you know what? I don’t work on Fridays. What if I come in, my nephew plays the guitar and I’m going to bring him in and we’re going to do a sing along on Friday at noon. Is that okay? “Yeah, that’d be great.” Well, let us help you, let us make it better for our loved one and better for everybody else. And I think we’re really, really missing that right now.
Yeah. I would tend to agree. And, to me there are things just as bad, maybe worse than COVID out there. I think of loneliness, isolation, mental health and all the things that a family who knows the person, the resident better than anyone, and has a stronger relationship, longer relationship even than the community does, to remove that critical relationship during a time when everybody’s feeling you know, a little bit scared and overwhelmed that’s tough enough, but you know, we talk about these fancy terms of social prescription, social prescribing. We talk about mental health challenges on the rise in our nation and in these communities and, and then to remove people from their most meaningful relationships. And we know there’s a million studies out there on the correlation, the positive correlation between friendship, companionship, and these relationships to health that those statistics and those studies and those conversations are just as, and as important as the physical respect of something like a COVID lockdown.
We have to balance that. And I think you’re right. We have to come together to have the conversation. We were saying as an industry, I’ve always heard it, that the senior living industry is actually an extension of the family’s care. We’ve always said that in our industry, that we’re there to partner with the families, we’re there to assist with the activities of daily living. That’s what we were founded upon. And so I hope that you’ll continue, Mary. I love your energy. These conversations are fun. I wish we could talk for days. You know I’m trying to get you on a regular show on Bridge the Gap to bridge the gap between our industry leadership and the consumers. And I hope you’ll continue to come back and talk with us.Lucas, what a fun conversation. It’s always great to have Mary on.
It is it is. Yeah. Mary, thank you so much for your time today. Any parting words before we wrap up?
Mary Daniel 22:43I would encourage everybody who’s listening from the industry to really consider or how your company and how the individual communities themselves are working with families. I really would encourage you to reach out to them, to reinstate your family councils, to get their input on decisions that you’re making, if you can involve them and they feel involved, and this becomes a partnership of everybody working together. And instead of us apart, and we really feel that right now, families do because of everything that’s happened, because of all the restrictions. I think if we can really work together and make this industry, starting with your facility, with your community, if you can make that community better, then it spreads the word to others and can only go uphill and better for everybody else so that we can work together and not be a partner. Let’s all do this in the best interest of your customer and my husband, so that when all is said and done, and this is what I preach to my group, the Caregivers for Compromise group, when all is said and done, we want to be able to look back with no regrets, and we’d really love your help in being sure that we can do that.
Mary Daniel caregivers for compromise, compelling story and compelling message. We will make sure that all of this gets into the show notes, the appropriate, and the ways to connect and contact, go to BTG, voice.com and you can download the transcript, connect to all of our content on the bridge, the gap network. Mary, thank you for your time today. I hope you have a wonderful day.
Thanks so much.
And thanks to everyone for listening to another great episode of Bridge the Gap.