[00:00:29] Dannelle: Hello and welcome to The Caregiving Soul. The Caregiving Soul podcast is a series of conversations about what it’s like to care for loved ones in need, and how we can better navigate the relationship, and the physical, emotional, and logistical complications we encounter as partners in care. 

[00:00:52] I’m your host, Dannelle LeBlanc.  

[00:00:57] [Music Ends]  

[00:00:57] Today I’m speaking with C. Grace Whiting. Grace is a mission-driven leader with a commitment to make the world a more caring place. She’s an expert in long-term care and health policy and she’s served as a resource for members of the U.S. Congress, national and global advisory boards, and media such as the New York Times and CSPAN. Grace now serves as the Executive Director of The National Academy of Elder Law Attorneys or NAELA for short, after serving as the President and CEO of The National Alliance for Caregiving. 

[00:01:35] Today we’ll discuss some of the reasons to consider working with an elder or special needs attorney and how advanced planning can help alleviate some of our caregiving stress. Grace’s unique perspective from both the legal and caregiving professions allows her to see and work with caregivers from a policy standpoint.  

[00:01:57] [Music]  

[00:01:59] Welcome to C. Grace Whiting! 

[00:02:04] [Music Ends]  

[00:02:04] Dannelle: Grace, thank you so much for joining me on The Caregiving Soul podcast! Welcome! 

[00:02:11] Grace: Oh my gosh. Thank you so much. I’m very excited to be here. 

[00:02:15] Dannelle: I’m so pleased to have you in your new position as the executive director of NAELA, The National Academy of Elder Law Attorneys after such an impactful term as president and chief executive officer of The National Alliance for Caregiving. Can you share a little bit about your background in caregiving and how you got here? 

[00:02:44] Grace: Absolutely. I fell into caregiving almost by accident. I had worked for an association that represented publicly traded home healthcare providers, and then I had the opportunity to work at The National Alliance for Caregiving and mentor. 

[00:02:59] Right now, I’m the new kid on the block at NAELA, I just joined NAELA in January. So, I was able to that rich experience of being in the caregiving community, and then think about how I can apply that to an association of advocates, many of whom are working with family caregivers, older adults, people with disabilities. 

[00:03:21] Dannelle: I can’t think of a better person to be at the helm of NAELA right now, given your experience and everything that you learned and bring to the table. To give further context to that, can you talk about what your three core values are and how they connect to your experience supporting caregivers, both in your past, your previous roles, and in your current role. 

[00:02:35] Grace: Yeah, I’d be happy to. And it’s interesting this idea of core values because a lot of people think your values really are shaped by the people around you. So, one of the first times I was at an event at the white house, it was for caregivers and Rosalynn Carter was there, Jill Biden, as well as Elizabeth Dole, who’s been very prominent. And I was kind of in that mindset of, you know, what I value is being part of this national community. 

[00:04:16] And I was standing inside the white house, with a drink in hand, and talking to one of the fellows from the Elizabeth Dole foundation. And I said to her, “I just, can you believe that we’re here? I never thought I’d be inside the white house looking out at the lawn”. And she said, all I can think about is my husband who’s a wounded warrior and him sitting back at the hotel room by himself and whether he’s okay.  

[00:04:41] And that sort of grounded me and sort of shaped my values differently because I realized that you can go to all the fancy dinners in the world, but really what’s important is your ability to really connect with other people. So, I feel like empathy has really become one of my cornerstones, and it’s a critical skill to be able to have in advocacy. 

[00:05:02] I’m a creative person. I feel like creativity is so important, especially when you’re thinking about how do I help this person get what they need in a way that they can truly buy in. I don’t know if I have a third. Dannelle all the thirds I think of are soft and fluffy, and I don’t know if lawyers should be – 

[00:05:18] Dannelle: [Laughs] 

[00:05:19] Grace: – soft and fluffy. [Laughs] 

[00:05:21] Dannelle: No, we need a little bit of that. So, like, if you have a third that, you know, is a little bit soft and fluffy, then that’s perfectly okay.  

[00:05:29] Grace: The one that comes to mind is love, and not in the romantic sense of love, but the sense of loving and appreciating other people and their experiences. And that’s something that when I was working in caregiving, it was just amazing to meet people that, to see sort of that love in action. 

[00:05:49] What does it mean? If I say I wanna be married to this person till death do us part, does that mean that if you get dementia, and we get divorced, and it’s 20 years from now, I’m still gonna come and care for you when you’re in a facility. And the truth is, is that families do that. Families do that all the time. 

[00:06:08] That really helped me reshape how I thought about, you know, it’s not just saying to someone I love you or I care about you, but what does that actually look like in action? And that’s sort of an exciting, a little fluffy, but an exciting idea. 

[00:06:22] Dannelle: I’m going to have to disagree with you there. I don’t think that that is fluffy at all. I think that that is foundational. And I think that if we had more attorneys with that mindset, we might be in a better place. And what that reminds me of, this idea of love as you described it, it’s tied to service, and as you said, appreciating other people and their experiences. 

[00:06:52] So, now that you have transitioned from the CEO role at The National Alliance for Caregiving into an executive director for NAELA, how do you see you can help make a difference in the lives of caregivers in this new role? What does that look like? 

[00:07:09] Grace: I think a lot of it is still shared, because we have 4,000 attorneys from every state in the U.S. in our association, and many of them work with family members. This is one thing when I was working in caregiving that I think is really challenging is people can identify on an individual level – “this is where I might need help”, you know, “I might need help asking my boss for flex time so that I can take time off to take my child to a special education program”. 

[00:07:38] But the sort of larger system-wide things, you know, “how do I get my insurance company to actually give me authority as the person with the power of attorney to make decisions on behalf of my mother”, “how do I get the Medicaid program to stop denying needed services?” And that gets into some real nitty gritty regulatory law, really complicated, questions. 

[00:08:03] And that’s where I feel like an elder law attorney or special needs lawyer comes in, because one of the things that makes them unique is unlike other areas of law – divorce, employment law – you don’t go to an elder law attorney or a special needs lawyer just for one thing. You go to them and they look at the whole situation and they think about how does everything interrelate? If we make this decision over here, is it gonna impact your eligibility for Medicaid benefits over here? That sort of holistic approach is unique in a lot of ways in the legal industry. 

[00:08:35] And I think one of the great advantages of having lawyers that pecialize in that type of long-term chronic care field, I think it’s also a little bit challenging for caregivers because sometimes there’s these different components, right? Like there’s the existential part, the grief, the moral injury related to someone you care about is in this terrible situation that requires additional care. That’s hard on its own, it’s almost a spiritual problem. But then over here you have this really concrete stuff: how do I get off work? How do I stop arguing with the insurance company? Those kinds of things. I’ll have time and capacity to deal with the spiritual, the existential, the grief. But if I don’t have time to deal with this, it makes all this bureaucratic stuff that much harder.” 

[00:09:31] Dannelle: Absolutely. Oftentimes, for us as family caregivers, we don’t realize that we need the help of an elder law attorney, or a special needs attorney, until we’re in some type of crisis situation. How can we better help to educate about the importance of speaking with an elder law or special needs attorney beforehand to help prevent some of the issues that come up? 

[00:10:04] Grace: I think this is where it helps to start from the position of planning. What do I want my life to look like? Especially when I get towards the end of life, or if I get to a place where I might need assistance. So, I think the first piece is just as families having conversations about that. The first couple times you have that conversation, it’s gonna be a little bit awkward. 

[00:10:24] I remember I went home one Thanksgiving and I had just learned about The Conversation Project, which is a tool out of Chicago that is intended to help families talk. Brought it up to my parents and I said, “do y’all have an end-of-life plan? Do you have a will?” And my dad just kind of gestured to the closet. And he said, “well, there’s a will in there and you’re in charge”. [Laughs] 

[00:10:45] Dannelle: [Laughs] 

[00:10:46] Grace: And I, and I thought, “okay. Uh…” But, you know, over a couple of years, as we talked about it, it demystified it a little bit, and my parents did eventually get to a place where they sat down with the lawyer, they updated their will, you know. And so, I think that’s an excellent place to start, and it sometimes helps to start that conversation by talking about your own experiences, or something you observed, so that it’s not about them and their legacy so much as it is just about, “I wanna make sure I can honor you, honor what you would want”. 

[00:11:17] The other thing, I think, and this is a shameless plug, but we do have some resources on our website that talk about what it is that elder law attorneys, or special needs lawyers, do, and the types of issues that they work on. In many cases, as well, people can reach out to a local bar association and talk to an attorney or consult with an attorney. And we have a find a lawyer registry on our website and you can go and read about individual attorneys on their websites. And that can be helpful just to have an initial conversation, even to say, “I don’t know if I need a lawyer, but this is what I’m facing”. 

[00:11:51] And I will say, you know, the barriers are high, right? Law in some ways it’s like taking your car to the mechanic. You’re not really sure if anything’s broken and you’re a little worried that they’re gonna come back and tell you you need to rotate all your tires and replace everything with, you know, gold hub cuts. And you’re just like –  

[00:12:08] Dannelle: [Laughs] 

[00:12:08] Grace: – How am I gonna pay for that? You know? But I think lawyers for the most part, and our lawyers, they really wanna make sure they’re doing right by the clients. And one of the things that we ask is that they agree to these aspirational standards for the practice of elder law and special needs law and those aspirational standards talk about how it can be really complicated to navigate, especially situations where someone might have dementia or sometimes a cognitive impairment, or they’re not ready to give up decision making. And that’s something that our lawyers, I think really take seriously. How do we do that? And respect the wishes and the dignity of the older person, or the person with disability, and also help the family member navigate this difficult time. 

[00:12:53] I think it’s one of those where just beginning to read about it can be helpful, having maybe one or two conversations can be helpful. And this is a very lawyerly thing to say, but planning always helps so that when you are in that crisis mode, you kind of already know, okay yeah, we have a plan. This is what we’re gonna do. Even if we have to tweak the plan. 

[00:13:14] Dannelle: Those are such great points. I think that, in general, family caregivers are great planners, but you can’t make a plan for what you don’t know about. So, being aware that this is something that needs to be part of the plan, I completely concur about The Conversation Project, it’s a wonderful resource with prompts for these types of conversations, because this is something that we’re not trained to do. I mean, who knows how to have this kind of awkward, very uncomfortable conversation. And so, having some guidance about that, and getting educated about what is it that we might encounter that we need to plan for. 

[00:13:59] Grace: You hit the nail on the head there because it is a situation if you don’t know what you don’t know, and I’m gonna give you a completely nerdy example, if that’s okay. 

[00:14:07] Dannelle: Yes! The nerdier the better!  

[00:14:10] Grace: So, one of the things our members worked on recently is there’s a big new law that was passed called The Secure Act, and The Secure Act actually made it easier for people to save for retirement, to save for the future, to leave retirement accounts for their friends and relatives, if they were to pass away.  

[00:14:29] Let’s say I have an adult child with down syndrome, and I wanna make sure that if something happens to me, my child is gonna be okay. So, I set up a special needs trust, and that special needs trust means that money, when I die, will flow from me to them and they’ll be provided for.  

[00:14:46] Well, one of the things our lawyers noticed is under the IRS rules that the special needs trusts were treated differently than other types of retirement accounts, and that the way the regulation was written was it assumed that if I have a retirement account and it goes on to my friend or my relative that has down syndrome, if it doesn’t go to a trust that person’s not able to access that money without going through the court system, without going through probate court, without finding someone to help them get access to it, because they may not have the capacity to do the contracting and the legal side of it. 

[00:15:24] So, essentially now it costs a whole heck of a lot of money to go get this retirement account that someone left to help take care of from me. So that’s an example of, gosh, what a convoluted crazy issue, and a lawyer who works in that area is gonna know it like this, and save a lot of time and grief down the road, especially for those well-intentioned folks who are saying, “wow, I love my nephew who has down syndrome. And if something happened to me, I’d love for my retirement account to go to him”, that we’re not accidentally punishing people who are doing that because they didn’t know the ins and outs of all the IRS regs for The Secure Act. 

[00:16:04] And that’s where I think it can be really helpful, but it’s also, I mean as a huge nerd, I was like, “oh, how interesting”. But I’m sure a lot of people were like, I don’t wanna read this role on required minimum distributions under this section of the IRS code. [Laughs] You know? It’s like – [Lauhgs] like please spare me. [Laughs] 

[00:16:24] Dannelle: But we need somebody, somebody needs to do that. Okay? Somebody needs to be in charge of doing that, to help prevent those kinds of unintended nightmares, frankly. There’s The Secure Act and then it seems like I’ve seen so many different policy changes that have been happening over the past few years related to caregiving and healthcare. So, getting insight and having someone who knows what’s happening right now is hugely valuable. 

[00:16:59] Grace: It’s kind of a funny thing because it comes in waves. There’s actually a secure act 2.0 right now, so there’s more retirement protections coming through, but it’s been sort of folded together in this big package called The EARN Act, and it always cracks me up because they’re always, I figure someone at Congress, their job must be to write acronyms, because it was like The Secure, which is an acronym, and The Rise and Shine Act have now folded into The EARN Act. [Laughs] And I thought it’s almost like a Wordle, you know, where they’re like, what should we call this law? And then they mush it all together. 

[00:17:33] But that was bipartisan passed out of the Senate committee just a couple weeks back. And within that, there were some fixes for things that impact people with disabilities. For example, the ABLE accounts that you’re able to create a specialized savings account if you have a disability. They added a tweak to the law so that it could be available to more people. And that was kind of folded in, in this mish mash, but you’re right. It changes a lot and it changes very frequently. And sometimes when the things get all mushed up, it’s hard to tell like, well, did my policy survive or is it gonna come back later? Or how’s that gonna work? 

[00:18:10] Dannelle: One of the things that is interesting to me, as someone who is a bit policy adverse – [Laughs I follow it, I understand the importance of it, but when it comes to getting down into the nitty gritty, my brain shuts down. But one of the things that I think is really interesting, and I think it’s important that we stay mindful of, is that you can have a law that passed, all of this good intention, helped a lot of people, but while also having a lot of issues as far as rollout, and intended impact.  

[00:18:48] If you look historically at the implementation of Medicare, for example, when it first started it was the same thing, where you had all of this pushback against Medicare, and the rollout, and issues, and over time. Now it’s something that, I think for most of us, we would consider it to be indispensable as a social safety net. And one of the reasons why it is so effective, and is so helpful, and is a lifeline for so many people who pay into that, is because of the incremental fixes and adjustments that have been made. 

[00:19:29] Grace: You’re exactly right. Before I came to Washington, you could watch a movie like “Mr. Smith Goes to Washington” and you think that the process is gonna be: you write one piece of legislation, it gets introduced into Congress, they debated it on the floor, yay or nay, and that’s it. But the reality is, is that most legislation it’s a 10-to-15-year process. 

[00:19:51] Dannelle: What just popped into my head is there is a parallel here, in this idea of it first getting introduced as education, and then it becomes this ongoing conversation that happens with advocates. The idea of having a conversation with our loved ones about, what is it that you want your end of life to look like? I wanna make sure that I’m honoring that. And that becomes an ongoing conversation. The mindset being, as far as advocates, whether we’re advocating as a family caregiver within our family unit, or we’re out in the world advocating with our Congress person, that we have this mindset that it’s an ongoing conversation. 

[00:20:40] Grace: Yes, and as you’re describing it, I’m thinking, you know, the nerd term would be political capital. Like when you just become friends with someone, you give them a lot of leeway. If you go to the movies with them and they’re really loud and snacking a lot-  

[00:20:55] Dannelle: [Laughs] 

[00:20:55] Grace: – you give ’em more leeway, right? Like if it was your best friend, you’d be like, whoa, cool your jets. But you know, they’re new. They have more political capital at that point. But you have a limited amount of that sort of good will, and it’s the same with your family, you know? So, if you start soft, and early, it costs less political capital. If you wait till the crisis moment, now you’ve got to use all of your good will on this one thing. 

[00:21:22] It makes it a lot riskier and it’s the same in politics and personal relationships that you know, how much good will do I really have to spend? And, rather than trying to take the big risk and spend it all at this one crisis point, I can spend a little bit over time and that gives me time to rebuild some of that good will too, build up trust, build up closeness. But yeah, I mean, that’s a very nerdy way, I guess, to look at it, that everyone’s a voter, so to speak, but…  

[00:21:48] Dannelle: Nerds of the –  

[00:21:49] Grace: [Laughs]  

[00:21:49] Dannelle: – world unite! 

[00:21:50] Grace: [Laughs] Yeah. But –  

[00:21:53] Dannelle: [Laughs] 

[00:21:53] Grace: I think it is exactly true. It’s the same thing when you think about families, right? There are some things that your sibling might be able to say that you could never get away with saying because you’re just not gonna be the right person to persuade them to do it. 

[00:22:07] And that I think is also something families are always navigating, is who’s gonna be the right person to have the conversation about “it’s time to stop driving”. How are we gonna convince them that that’s a good idea? 

[00:22:17] Dannelle: So true. Grace, golly, so much great perspective and just insight that you have. What is it that you want our audience to know right now about your work, the impact, where we’re going? 

[00:22:35] Grace: This is, gonna seem a little random, but when I was at NAC, one of the last projects I worked on was understanding this idea of caregiving friendly workplaces. Because when COVID happened, we had this almost like a miniature revolution, the realization that people, particularly in sort of knowledge jobs that weren’t as labor heavy, that they could work from home, that they could balance caregiving and work. 

[00:22:59] I heard people with disabilities talking about how there were places that they couldn’t go because they weren’t accessible that now they could visit virtually. They could have social relationships that they couldn’t have before, because they weren’t available virtually. I know a lot of community organizations moved programming online. There’s a huge accessibility boom that came with that. 

[00:23:22] One thing that’s bothered me a little bit about our recovery, and of course I know [Laughs] technically the pandemic is still a thing, but most of the country, I think, has sort of said, “okay, we’re in recovery mindset”, is we opened all of these doors for people with disabilities, for people with care responsibilities, and now we’re kind of closing some of those doors and saying, “no, actually we do want you to come back into the office” or “we do want you to. come in person” and we’re not thinking about accessibility in the same way. 

[00:23:54] And that’s where I think about caregivers being able to be huge advocates and say, “this isn’t just, I wanna work from home so I don’t have to put on socks and shoes. This is working from home allows me to care for this person, who’s really important in my life, and continue to be a productive, engaged employee. 

[00:24:14] And I think for people who are outside of the home, the leave programs, helping people have leave if they’re sick, that we saw under COVID, you know, the federal government passed all this leave to help take care of people who had COVID – kids, yourself, and all of that expired. So, I think there’s that piece too of why would we throw out the good things we learned out of such a traumatic experience and what can caregivers do to keep those solutions in the conversation? 

[00:24:43] Dannelle: I’m so glad that you brought that up. So, we, as caregiving advocates, when we have those conversations about why it’s important to continue this accessibility, the virtual accessibility, and ability to work remotely, that we frame it in that way. Yes, absolutely. I think that’s so important. Let’s take the good, let’s take some of what we learned. Let’s take some of what worked that we discovered as a result of the pandemic experience and build on that.  

[00:25:21] Grace, I have one last question for you. Outside of caregiving and elder law, what is something you are also passionate about? 

[00:25:32] Grace: So, do you want a professional answer or goofy answer? [Laughs] 

[00:25:34] Dannelle: I want a, I would prefer the goofy answer. 

[00:25:38] Grace: Okay, I’m gonna blend, I’m gonna blend them. So, in general, I think it’s really important that people play, and whether play is dancing or singing or drawing, or however you define play, sport, I think it’s really important because it activates a part of your brain that you just don’t get activated any other way. It lets you process your thoughts. I just feel like people don’t play enough. 

[00:26:03] I will tell you lately, I’ve been obsessed with Animal Crossing™: New Horizons. It’s cracking me up because as cute as the little AI characters are, I definitely feel like the raccoons are scamming me. But yeah, I would say I’m passionate about play. 

[00:26:21] Maybe that’s my like fourth value is fun. I think fun is important because it helps people process and deal with the rest of their life. The movies, or games, or social time with your friends, all of that’s really, we say, oh, that’s extra, but it’s not. That’s core to our health and wellbeing is being able to just experience the joy of living. 

[00:26:44] Dannelle: Yes, the joy of living. Adult recess, okay? Recess is critical. 

[00:26:53] Grace: Yeah. Part of why kids are so resilient is exactly what you’re saying. They take recess, they take time just to play, and that’s something I’d love for everybody to do, just a little bit. 

[00:27:05] Dannelle: I’m all for that. Grace, thank you so much for joining us today. It was a pleasure speaking with you. 

[00:27:13] Grace: Absolutely. Thank you so much for having me. I love the work you guys are doing, so thank you for what you do and for having me on the show. 

[00:27:20] [Music]  

[00:27:23] Dannelle (Recorded): Thank you for joining our conversation with Grace.  

[00:27:28] We didn’t have all the pieces together but one of the most helpful things I did do was to work with an elder law attorney. As I became more involved with managing my father-in-law’s health care needs, I was at first at a huge disadvantage because we didn’t have documentation in place to support my role as his health care proxy.  

[00:27:51] It made the work of dealing with health care providers, insurance, and other entities much more difficult and time consuming. There are variations in documentation depending on what state you live in, but here in Texas we had a durable Power of Attorney, which authorized me to make health care decisions on behalf of my father-in-law when he wasn’t capable. It didn’t solve all the problems, but it made a huge difference in efficiency and timeliness of his care. 

[00:28:27] This conversation shows how important it is to not just have the knowledge on how to care effectively, but also to be aware of how legal support can prevent unanticipated problems. By utilizing the services of an elder care or special needs attorney, we can better prepare for what’s next rather than reacting to emergency situations as they happen without legal backing. 

[00:28:56] For more information on Grace, check out our show notes.   

[00:29:01] Every episode of The Caregiving Soul has a page on empoweredus.org, where you can find the extended show notes – including tips and takeaways, transcripts, and relevant resource links.   

[00:29:17] If you’d like to share your own tips related to this topic or connect with us, visit the Empowered Us Contact page or reach out to us on our social channels.      

[00:29:29] The Caregiving Soul is an Empowered Us Original presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to this show wherever you get your podcasts.     

[00:29:47] And remember, the right care includes care for you.   

[00:29:58] [Music Ends] 

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