Bridging the Gap: Enhancing Policies to Support Caregiving Youth

This week’s special policy panel, featuring experts Marvell Adams Jr. and Toni Gingerelli, discussed policy change and support for caregiving youth. They highlighted the significant gap between the estimated 5.4 million youth caregivers and the likely much larger actual number, emphasizing the need for better data collection through school-based assessments and self-reporting to understand this hidden population's challenges and experiences.

The discussion, featuring Marvell Adams Jr. and Toni Gingerelli, covered the impacts of youth caregiving, such as educational disruptions and mental health struggles. They emphasized the need for recognition, resources, and inclusive policies, praising the national strategy to support family caregivers while calling for more inclusivity of youth caregivers. The conversation highlighted the urgent need for equitable, innovative, and collaborative policy solutions to better serve caregiving youth.

About:

Marvell Adams Jr. is the CEO of Caregiver Action Network (CAN), dedicated to serving caregivers, marginalized communities, and older adults. Inspired by Alzheimer’s disease since high school, he holds a Bachelor’s in Political Science and a Master of Healthcare Administration specializing in Aging Services. CAN aims to improve the quality of life for millions of family caregivers supporting loved ones with chronic conditions, disabilities, or diseases.

Website: www.caregiveraction.org/
Facebook: @CaregiverActionNetwork
Instagram: @caregiveraction
Linked In: @caregiver-action-network
YouTube: @CaregiverAction
TikTok: @caregiveraction

Antoinette 'Toni' Gingerelli, Director of Policy and Advocacy for the National Alliance for Caregiving, translates research into policy for America's 53 million family caregivers. She oversees operations for Act on RAISE, Caregiver Nation Network, and the direct care workforce policy portfolio. Previously Chief of Staff for NJ State Senator Vin Gopal, Toni holds a Master of Public Policy from Harvard Kennedy School and is an advocate for gender equity.

Website: https://www.caregiving.org 
Facebook: https://www.facebook.com/NA4Caregiving/
Instagram: https://www.instagram.com/caregiver_nation/
LinkedIn: https://www.linkedin.com/company/national-alliance-for-caregiving/ Twitter: https://twitter.com/NA4Caregiving
YouTube:  https://www.youtube.com/c/TheNationalAllianceforCaregiving  

Transcript

Natalie: 0:03

Hey, folks, it's your favorite sisters here with the Confessions of a reluctant caregiver podcast. This episode is part of our special series caregiving youth hidden in plain sight. We're partnering with my care friends to feature organizations who offer services and support to millions of our youngest caregivers worldwide. Now let's listen in as we learn more about these amazing organizations.

Unknown: 0:31

Hey guys,

Natalie: 0:32

it's your favorite sister here. It's not JJ, it's Natalie, and we are here with my favorite brother, Todd Keats, for the caregiving youth hidden in plain sight. Special Series, Todd, I am so excited about today's educational episode.

Unknown: 0:50

I'm right with you, Nat, this has been a long time coming. And yeah, we're really excited to be here to talk with Marvel and Tony about this important policy topic.

Natalie: 1:02

You know, policy sometimes people think is not really sexy. You know, honestly, it's like, oh, it's like, oh, we're talking politics. I'm like, and it's really hard to make change. And people can feel really overwhelmed by the idea of, how do I make regulatory change? And I don't really understand three branch process. And like, people are like, I don't even know what that means like. And so I think we have amazing panelist guest from Marvel, Adams and Tony, I want to make sure that I do not. Ginger Ali, is that right? You

Unknown: 1:35

got it? Heck yeah, man,

Natalie: 1:37

give myself a high five over here from Marvel, from the Community Action caregiver Action Network, and Tony from the National Alliance for Caregiving. And so Todd, I'm gonna go ahead and introduce our guests, give a little bit of background about them, and because they're powerhouses, and I don't want to delay, I don't want to waste time people yipping lifts and me flapping. So let's get started, friends. Marvel Adams was a caregiver. Action Network is a highly skilled I'd love that in your bio, He's highly skilled. I love that about you. Advocate and he is highly skilled. I can attest to that, advocate, educator and leader. He has a lifelong commitment to serving caregivers, marginalized communities and older adults. He has shown dedication to serving caregivers. I love this since high school, and now it makes sense, because I think you were a youth caregiver and and that you showed dedication to serving caregivers. You became fascinated with Alzheimer's disease while completing a biology report. That's really interesting. That's really great. You know what ninth grade is very you know, instrumental in lives so but throughout your 20 year career, you have been committed to serving caregivers and older adults in Marvel coaches and practices highly trained dementia skills, which is a fantastic and then, of course, you have an extensive understanding and teaching the perspectives and needs of persons living with dementia, so that is very near and dear. I love that you you know diversity, equity, inclusion, belonging and accessibility are central themes, and that all speaks to my heart. It's what he believes in, and he dedicates himself to fostering equity in caregiving for all. And I am all about being some inclusive friend. So thank you, Marvel for being here, and Toni gingerelli, she is new to the National Alliance for Caregiving, but she is not new to the scene. So I'm going to tell you, Tony is the Director of Policy and Advocacy at the NAC, where she helps guide the organization's work to translate research into policy action on behalf of the 53 million unpaid family caregivers. Tony oversees the operations and advises strategy on act on, raise a national campaign focused on accelerating implementation of the national strategy to support family caregivers. If you don't know what that's about, you need to know there's a lot of recommendations. It's very impactful. Tony's gonna, like give us the, you know, 411, on that. And really excited about that. Tony has extensive background in policies and making change, and she is also a huge advocate for gender equality. Love you too, Tony. Thank you so happy to have both of these folks. And then Todd, we were supposed to have Rita here with us. We were

Unknown: 4:23

and unfortunately, Rita has had a family emergency this week and can't join us. Rita is responsible for policy and legislation. She's lobbyist for a, a, c y, the American Association of caregiving youth, which I'm grateful to be a part of, on their national advisory council. And so they are, you know, they're an organization. They were the first organization that was involved in caregiving youth. And it's great that their time has come all the time and effort that Connie siskowski, who was a 2012 CNN Hero, wow, and. It's it's awesome that the time has come for this, and I'm so glad to be here with Marvel Tony. And of course, you my favorite sister. Oh,

Natalie: 5:08

thanks, thanks. Well, let's jump right into our questions, because now that we know we brought the best of the best, it's time to let the best speak. Todd, yeah, absolutely.

Unknown: 5:19

So let's touch a little bit. We know we know what we know, but we don't know what we don't know, as the saying goes, and when you talk about it, there's the last research that was done was it says that there's 5.4 million caregiving youth in this country. We know that that number is significantly larger, significantly. And so when we consider that, you know, we have to start looking at, how do we use the insights from the current data, and thinking about that it could be larger. So what do we know about youth caregivers based upon the current data? We know a number, and we know through what we know in our organizations with A, C, y, but here's a question I'm actually gonna I'm gonna ask Tony this, how does the information that we do have, how does that shape our understanding of their needs and the challenges they face? Yeah, that's a really great question. Todd, so that number for the 5.4 million youth caregivers actually was estimated by caregiving in the US and 2020 which was a joint report with the National Alliance for Caregiving and AARP, and we're really excited that we're working on our 2025 report, which will have some new, updated numbers on youth caregivers. So be on the lookout for that when with what we do know. And again, there's very limited information. This is something that is also recognized in the national strategy to support family caregivers. We know that for youth caregivers, there is an impact on their education. There was a recent report by John Hopkins, by Assistant Professor Catherine Miller, that showed that youth caregivers are less likely to be enrolled in school and have significantly less time on educational activities which could have long term implications. We also know that youth caregivers experience poor mental health outcomes than their non peer caregivers. But I also wanted to emphasize that being a youth caregiver positively impacts folks lives in many ways for the individual, you know, for purposes of management of life skills and as well as like finding purpose all these different things. But the reality is that we need a lot more data, and part of the work that we're doing with NAC is around data advocacy. How are we really pushing forward, showcasing the need that we have for increasing the data around youth caregivers, because at the end of the day, data informs a lot of the policy. What we can do right now is bring in youth caregivers voices to the conversation, whether that's bringing them to the Hill, which we've tried to do with NAC, or helping them in their, you know, building up their leadership capacity at the state level, and finding other ways to involve them, to help inform the conversation?

Natalie: 8:03

Yeah, I think I'm super excited to hear about the 2025 report, because I think it's going to be, I know that there's numbers to saying that. I think by 2030 because of the baby boomers retiring, and that's the focus is on the baby boomers, because they're retiring at 10,000 individuals per day, and it's estimated that we need 75 million or so unpaid caregivers to supplement them, in addition to the healthcare system. That study, though, came out, I'm assuming it was done in 2019 or so Tony, 2018 2019, pre pandemic. So we've added on, you know, a slight four year three, four year pandemic and the after effects of it. With long covid People are having to take care of more people. Are you all like this is my own personal question. It's not even on the list. Are you thinking you're going to see an exponential jump so that 2030, number might be really reflected in 2025 like we've that need is so much higher right now?

Unknown: 9:03

Yeah, that's, that's a really great question. And I, you know, what we know is, you know, we do this report every five years, and we see an increase in the amount of family caregivers every year. And you know, we've seen since our last report, you know, five years before 2020 there was an increase in youth caregivers, and we imagine that trend will only increase. I think the other thing is that there's been more of an awareness about, you know, what caregiving is, and self identifying as a caregiver, particularly after covid. So, you know, I imagine that it's likely that there will be an increase as well in terms of, you know, the amount of people who self identify and really think about the activities that they're performing on a daily basis to support someone, whether it's someone who's aging or has a chronic condition. So we're really excited for that 2025 report. I have a question about that. It's really important when you talk about self identification as a caregiver. I mean, I know myself and I didn't. Identify as that as a kid, is just what I did. I helped my uncle, I helped my grandparents and and how will the data? How will this be reflected in how the studies being done? Because who's answering it? The kids aren't necessarily answering these questions. Are they, or if they are, how will they? How are we helping them identify as good

Natalie: 10:21

question. Todd, good question. Feel like the Family Feud. I'm good question,

Unknown: 10:25

yeah, yeah. So this is a, you know, a national surveys that that's done, and the the estimates are based on households. So, for example, you know, we don't specifically ask people, are, you know, do you identify as a family caregiver? But we ask folks like, have you assisted someone with X, Y or Z task on a daily basis, just because self identification is so much of an issue. And then from there, we are able to assess that based off of, you know, estimates from you know the household, in terms of, like, how many you know, children are in the home, and things of that nature. So our research team could definitely, I think that'd be a really interesting conversation to have with them about caregiving in the US, particularly when 2025 comes out. About how those numbers are calculated, but they're based on estimates from the amount of adults that we had filling out the survey, right? So it's the adults are filling it out, so perhaps they're not seeing their kids as care, youth caregivers. So that's where the number it's. I'm very interested how that gets covered. Yeah. And, you know, one thing I will add real quickly, because I think it's important, is, you know, I know we're going to talk about your policy solutions, but I think it is important that we're asking you themselves, right? And, you know, Connie at A, C, y has, you know, been able to do a little bit of this in Florida. But one of the things that we can look at is, you know, using help school health assessments, right? So these are assessments that help to identify strengths and weaknesses of school health policies and programs and kind of provide this, this snapshot of what's happening for students in the school system. And, you know, having a question about youth caregiving, you know, how do you help someone at home with X, Y or Z activities to help, you know, inform the conversation and provide schools with the information they need to be able to actually be resources to youth caregivers is, I think, a great place to start. Is my understanding correct in that that's one of the challenges, is to get schools to actually do those questionnaires, or get the kids to report on those questions. Are they actually? What are they doing at home for family members? Yeah. You know, I think it varies state to state and district to district. So I can't speak for all all the schools, but you know, I think it would be, you know, that's something that can be discussed with school boards or within your school district to help add that question to the questionnaire. I think it's, you know, definitely tough. You know, a lot of things you know happening in schools. There's a lot of pride, you know, shifting priorities and things like that. But I know a lot of schools are already doing these assessments. So adding another question, I think, is something that would be considered a reasonably easy lift, especially, you know, with some advocacy, yeah, Marvel, I saw your mind going. I

Natalie: 13:13

saw Marvel's mind going to, I want to let Marvel. Hey, Marvel, come on in. Yeah, no,

Unknown: 13:17

no, because it clicked in my head that, you know, the other piece of this that because I had a friend in high school that it didn't dawn upon me until this conversation really should have been, been seen as a caregiving youth. But here's why, his mom had cancer and several, several bouts, couldn't work, and he worked overnight and was sleepy. I mean, would fall asleep in class all the time. And the reason he went to work was because his family needed that income. And even though he was not physically hands on, direct supporting his mom in the household, he was bringing in income because that's what the family needed. And so, you know, it just kind of occurred to me that, like, you know, whether it, whether it's a conversation now it or not, but soon enough, that's another aspect of this that we probably don't talk about as much as we should. Because, you know, again, going back to my own personal story, my mom, she dropped out of high school when she was 14, after her dad passed away, because to take care of and, you know, into work. And you know, how often is that happening where school age kids are neglecting their own educational opportunities? You know, for being a caregiving youth, and that can have a huge, huge, wide scope of definition, whether it's doing actual care, doing things around the house, or, quite frankly, contributing to the finances of the household, because that's just as much of a need and a void that happens when someone's, you know, a care recipient. Potentially,

Natalie: 14:49

I will tell you this. I want to say this. I'm going to jump in and working in the mental health field with children and families for 25 years. Truancy like how many of our youth caregivers? Are labeled as truant, and a lot of children come into foster care due to truancy. And I'm sitting here in my mind, when you said that, Marvel, I thought of one specific case of a young man who comes from a Hispanic family. Mom is unable to work. He was working, and the school was like, well, he's true and he's true, and the mom just needs to get a job, and she needs to think about this. And we knew that there we knew that there was a there was a health related issue, but he got into the juvenile justice system, like we're putting these kids, because now you're truant where, and then some of these truant kids come into foster care. And I can tell you, social services in any state's gonna say we can't manage truancy like we can't. So that I wonder, and I don't, I can tell you that our forms, like our government forms, don't have the right boxes to check, to say, is this child a youth caregiver? Are they a caregiver in the home? And what does that look like? Because I had never thought about money like not like children going to work money, no.

Unknown: 16:05

And that's a great point you make Marvel and tying it to what Tony said about their on one hand, they're gaining skills. They're gaining skills and management and so on and so forth. But yet, perhaps at the at the detriment of their future life, because if they're not getting the educational opportunities that others are getting, well, their hiring is going to be it's going to be heard well.

Natalie: 16:33

And how many of this? And let's talk about discrepancies in race, because we know that the cost for caregiving based on race is exponentially higher for Hispanics, for black and brown friends, basically like seven. I think it's 70. I think was AARP had about 70 to 50 give or take is about the annual cost of caregiving for unpaid caregivers. And I think that jumps to between 11 $12,000 give or take for individuals are non Caucasians. I'll just leave it super wide open non Caucasians, and then you have access. And so it also means that they're going to have a harder time with mobility and breaking poverty. And so I think, you know, I'm like, Oh, I get hot on this. Like, I'm like, so I think this is so important. The study is so important that NAC is doing. And then, because I'm going to call out my friends who are superintendents, the school board members, like guys, we need the education system to jump on to so that we can really identify because Marvel, I know that you guys have a help desk. Like, I'm thinking about, like, like this, you know, the NAC is heavy, heavy in policy, and you guys are all, like, a different type of help and I want you to kind of jump in on that, like, how can the help desk and what are some of the things that you guys are doing to support each other? Because I hear, I know, you guys are supporting each other's work, yeah.

Unknown: 18:00

And so that's one of the things, you know, our help desk, that which is more than a help desk, you know. So it's you know, folks, if you, if you you know right now, or after you listen to this podcast, wanted to call 855-227-3640, or you could go to our website, caregiver action.org, where you can do a web chat or an email so, you know, multi modal in the way that you can engage. But the whole point of it is, we say to folks is that if you're a caregiver, call period, reach out period. It doesn't like across the lifespan, don't ever think to yourself. And we have this all the time. Well, you know, I'm not sure if I'm a caregiver. It's like, Look, if you ask yourself that question your caregiver period, there's, I don't know. I've never found an instance where a person went, I'm not sure if my caregiver in anything they said after that was anything but absolute caregiving, day in and day out. And so when we offer up these resources, and essentially, it's a, it's a it's a point of entry for folks, where, if you're not sure where to start, if you're a youth caregiver, if you are a long distance caregiver, if you are going through your third, fourth, fifth, 10th episode of caregiving. You know, we have one of our board members whose mother has MS and she has our board member has been a caregiver for more than half her life. Wow, you know, for her mom. So you can imagine that the number of episodes that them from different situations that come up really can lead people kind of back on their heels. And so we say to them, it's like, give us a call. Because sometimes you may discover it's just a conversation and just to get something off your chest or to get some mental health support. Sometimes it might be recognizing that your local triple A is doing something different in Sacramento than they are doing in Denver. And so we can help you, guide you to that, but understanding that you are not alone. And so really having the absolute understanding that self recognition is a big part of this. Because, as we all know, half the people out there that do some sort of caregiving role or responsibility do not recognize themselves as a caregiver. And so from the raise action, from the national strategy. Understanding that self recognition is a huge part of that first phase of making sure caregiving is on a larger scale, but from our health desk perspective, we really do partner and figure out ways with our team of social workers to support individuals and have them understand. Look, thank God you called. We want to help these workers possible. Call tonight, tomorrow, the next one, you know, whatever you need to do. Because from our perspective, if we can provide them with resources and enable them to be connected, not just to resources but to others, to local support groups, to online, virtual meetings, then they are more equipped to be not only great caregivers, but perhaps, I would say, perhaps definitely is equally as important is that they also are being reminded and encouraged and guided to take care of themselves. Because without doing that, and you all know this, you get on a plane, what do they say? Put on your mask before you put on the mask of your child or someone else. And it's exact same scenario that if you burn yourself out, and if you're a youth caregiver, I mean, think of the stuff that piles up. You're talking about school, you're talking about being a caregiver. You're talking about all the stuff that happens regarding homework, extracurriculars, I mean, and teen aging. I mean, being a teenager when

Natalie: 21:15

we were younger, Marvel. It was easier when we went there was

Unknown: 21:18

no record of it either, yeah. So it's just there's all those aspects of it, and being able to have this resource for us is really being able to say to that 16 year old who's working overnight to be able to support the family, that one you're not alone, and that there is help for you, even if you think as a 16 year old with a mom that has a younger onset Alzheimer's, that there's nobody on this earth that is similar to you guess what? There, unfortunately, are a lot of individuals that enter similar circumstances, but the thing that's even more similar is them not recognizing that they should and could be reaching out for help.

Natalie: 21:55

You know, I'll say this one of the things, because, you know, Tony, you mentioned this, and this was my perception going into this. I was so concerned about having youth share their experiences and it being very triggering, and that that was going to be very traumatizing. I'm very much a trauma informed care person, because I'm a social worker by trade, and I'm always I mean the questions and how we structured them were trauma informed these kids are actually a lot they were the opposite of what I have. Would have thought they would have been a lot of opposite, because a lot of people think they're gonna have mental health issues, they're gonna have truancy. And so those kids absolutely exist. There's a lot of them, okay. They're also very well hidden. I think the other really hidden kids are the overachievers. So Kaylin was just on. I can tell you, when you hear ADITYA from cares trust, he's from the UK. This kid, I'm gonna tell you, I'm like, he could run for Prime Minister. He's already presented before the House of Lords. I mean, the kid, the girls from the young ladies from Canada, the girls from Australia, these kids are are the most overachieving kids. And that's the other side of it, and that's still a mental health piece, too. Like, let's be really clear, just because the kids are doing really well in school, and they are not having any behavior problems, and they're doing it all those kids the woods. I mean, think about your educators. You spend your time on the kids that are giving you problems.

Unknown: 23:27

Well, so true. And you think about just in general. Think about the expectations on those kids, expectations of kids who are overachievers, just in general, but those who are also caregiving youth. Just think about that and their expectations. They don't want to disappoint anybody that are going on. So the challenges of that, we could get into a whole other rabbit hole, related suicide, exactly, you know, related to that. But it's a great point. Matt,

Natalie: 23:55

well, let's This is, Oh, I love this. I mean, heck, this could have been the whole policy thing. There's some more questions asked. I'm like, Oh my gosh. I'm like, I gotta be mindful of my conversations. This is so good. Okay, so data is so important because it informs our what we do, our policy, and it informs actually, where dollars are put. So thank you guys for collecting that data. Let's talk about policies. So Tony, you mentioned there's a whole bunch of cool acronym strategies, because the President has been putting out stuff he put out, I think it started about two years ago, and they've just been putting out things for caregivers in general. So national strategy around that, but then you've got grandparents and kinship, because that's where it starts crossing over into foster care and mental health. So why don't you talk about some of the national strategy, some of the politics, the policies that are being put out. We'll talk with both you guys about how you guys are responding to that. But Tony,

Unknown: 24:46

why don't you start? Yeah, absolutely. So I think to start, it would be helpful to give a little bit more background on, you know, the national strategy to support family caregivers. The national strategy was developed jointly. By advisory councils created by the raise family caregiving Act and the supporting grandparents raising grandchildren act, and with extensive input from the public, including family caregivers, the people that they support, this strategy was created, and it's essentially a comprehensive roadmap of you know how to better support family caregivers, and it represents the first time that the federal government has collaborated with the private sector on a response to this long standing national need for comprehensive system to support family caregivers. So within the national strategy, there are nearly 500 actions and 350 actions at the federal level, which is some of the work that knack is actually focused on with our act on Race campaign, which is campaign that brings together, you know, nearly 120 campaign partners to move forward implementation of the national strategy and also help inform the next iteration. So one of those things that we've really tried to focus on is, you know, also making sure that diverse voices are at the table. And I think the first iteration did a really great job with this, but wanting to drive that forward even more so, and particularly with youth caregivers. You know, if you read the national strategy, it talks about, you know, how there really is a lack of data out there for youth caregivers, and gives, you know, some recommendations, but thinking for our next iteration, you know, how do we make sure youth caregivers voices are included even more so, you know, does that mean, you know, on our non federal for the non federal advisory council members, maybe there's a youth caregiver that's included to have their voice on the council. And really thinking through, what are some other ways to to make sure we're inclusive in the work that we're doing?

Natalie: 26:45

We got a couple of names. Probably could could recommend. I got a couple of names. Marvell, how about you guys? What are your thoughts on those, those legislative landscapes, especially around the strategies?

Unknown: 26:59

Yeah, you know, I think the national strategy is a holistic view, and it really provides us with this framework that if fully realized, and that's kind of a thing with all you know, kind of always with legislation, if fully realized, can truly make great strides in making caregiving, not only At the center of the commentary in all facets of lives and work and personalized, because it really is all facets of it. And every generation is seeing this, you know. So the boomers are seeing it, the sandwich generation, the Gen Xers are seeing it, you know, being it with with kids that they may have a responsibility for, older adults they may have responsibility for. We just talked about kinships. But the other piece of this that I think that still is on that edge of needing a heavier push, is, how do we more creatively provide that financial support? You know, because right now you're talking state by state, perhaps, where you've got certain plans that are able to provide that financial support for caregivers. Okay, it makes sense. How do you open that up to caregiving youth and like, how do you get over, you know, that stigma? It's like, well, you could make the argument, well, their youth that, like, you know, what? Why would you want to, you know, compensate them well, they're doing the work, right, you know. And how are we, in ways, recognizing that caregiving youth should be getting, you know, school credit. They should be getting volunteer hour credits. They should be getting some sort of financial support. They should be receiving some sort of guidance around educational opportunities, that maybe if they find that caregiving is something that really speaks to them beyond just the sense of obligation they may have, being able to have a career path that they can start in their teens, which my God bless America. You know, being able to do that is just a gift for, I think, a lot of folks. And so recognizing that that ground, that it really is groundwork that the raise Act and the National Strategy has set. And so fully realizing that is a big part of our work. But I think also recognizing that as long as we have kind of this really patchwork across the country that is more state specific. In many aspects of caregiving, you know, we're still going to have this patchwork of services and abilities and gaps and voids in really need that's going to be there, you know. And the demographics, even though they're changing dramatically on a national level, when you look state by state, you can see that some states are really being left behind in a lot of different ways. And so how do we really try to find ways to innovatively catch up? And you know, we believe that caregiver Action Network is that part of it is being able to understand and listen to and hear from caregivers on a day to day basis. And so when you're talking about legislative and policy objectives, and I know NAC is so spectacular. This is bringing the caregivers voice into that conversation and being able to recognize, okay, I'm not just talking about, you know, Congress Person X and talking about this, just this national strategy I'm talking about, we were talking about, you know, votes earlier. Your constituents are caregivers. I don't need to know what district you're from. I don't need to know. Zip code, they are your constituents or caregivers. And so if that's the case, you know when we go to when we go to the Hill, you know we can rely upon our friends at NAC that they really are educating legislators on policy and legislative so when we go to the Hill, we talk about, okay, this is Susie Q. She lives in your district, and her mom has Alzheimer's, okay? And this is a virtual reality program that we're utilizing to educate her and her colleagues around understanding what's like to have Alzheimer's disease. And this is why this is important. This is why the Older Americans Act is important. Reauthorization is important, and to really drive it home. And yeah, as we all know, nine times out of 10 you tell that story to a staffer in a hill office and they have some sort of connection to caregiving. You know, either that that's tangential, or many times they themselves have it's many times the elected official has been in a caregiving role, because many of them in that sandwich generation and older and Boomer generation. So there's so many aspects of this that that's what I love about the strategy, is that it really is a roadmap, you know, of our abilities, but it's that ability to deliver on it. And as we always know, funding, funding, funding, you have to say, oh, we need some money. You have to appropriate for it every year, and you have to recognize that without that consistent support, you are taking away support that is needed and and we also make this case, who do you think's helping keep re hospitalizations or hospitalizations down? Who do you think's helping with compliance with medications being taken? Who is the individual the doctor writes the script? We got lots of regulations and things that are around that the pharmacist fulfills it, lots of regulated support around that. But who picks up that prescription? Who makes sure it gets delivered and taken at 8pm as well as 8am who makes sure that, you know, there's, there's supplies and there's, there's, there's needles, there's, it's the caregiver. And so without that support, you know, in recognizing the need for 75 million unpaid caregivers, like think about that statement that our country needs 75 million people to go unpaid in order for our health system to function. Yes, that's pretty true number, right? Yeah. And so recognizing that and being able to make the case to legislators through policy that like this isn't about, you know, pork Bell barrel politics. This is not about, you know, writing in legislation that just like a razor sharp devoted towards a certain constituency. This is pervasively affecting the fabric of the US and our ability to really thrive, because we need caregivers in order to support and also, quite frankly, ensure that individuals that want to and can remain independent longer and contribute and be productive. Can do so with the assistance of perhaps a care circle around them. Yeah. And I also, if I could jump into ad, you know, I these are such great points, marval. And, you know, there was a report from AARP that said that, you know, estimated nearly $600 billion that's the value of family caregivers, our work.

Natalie: 33:01

I think that's undervalued, because my rate of paper hours a touch higher. Tony,

Unknown: 33:06

yeah, definitely got to call them up and let them know. Natalie, yeah, you know, I think one of the things that's so important is, you know, we talked about the stories, but bringing caregivers, you know, one of the things we did last year is have an advocacy day for act on raise we brought out over 50 family caregivers and advocates to meet with over 75 offices to share their family caregiving story and talk about how the national strategy has directly impacted their lives or their care recipients lives. And you know, Marvel hit the nail on the head. You know, time and time again. We, you know, had caregivers come out and say, you know, I talked to the staffer, and they talked about their family caregiving story, or they talked about how their representative, you know, cared for their parent with Alzheimer's, right? And those stories are so, so powerful. And making sure that youth caregivers are in those conversations, I think, is important too, whether it's making sure you can fund them to come for the flying days and things like that. We had one former Youth caregiver who's just been an incredible advocate, who I think is actually now on the board for a Cy Todd Maria Miranda, who has just, yeah, has been such a wonderful advocate. And really, you know, put our feet to the fire and saying, you know, what are youth caregivers included in this conversation? You know, have you thought about the policy lens from this for youth caregivers? So

Natalie: 34:30

I like that, you know, they should hold this the fire like. That's how we make change, if you think about it like, and that's how. Because if we, if we understand, then we can go and we can hold other people to the fire. We are our elected officials. Are the people who are responsible for writing legislation that represents our needs, everyone's needs, not just your policy or your political side, need. So caregiving is the most like neutral, bipartisan. Let's be friends Absolutely. Like, we don't see Democrats and Republicans in caregiving, like we all there. And so I think that's the biggest thing, and I think resource behind it, Tom, let's, let's move us, because we had such fun. And I like, I feel like we need, like, three part series on this one. I feel like one, one thing I want to mention again, because I'm going to come back and hit my friends at the Department of Education. I want to know how much the Department of Education, on a federal level, on a state level, are coming into these conversations, just because Marvel you just kind of caught my attention and what you and Tony are talking about, I really think, you know, interagency collaboration we've talked about on a state level. Look friends, this is a problem on a local, state and federal level, getting agencies to work together, because they all have their mission, but they also have their own language and charges that responsible to anything that you all have seen, where you've seen some really good interagency collaboration amongst the agencies. Rather, it's ACL hanging out with DOE. And I give these acronyms because that's Department of Education, or, you know, so guys and so ACL and oh, the ACL is the, give me that full name because it's Community Living Administration for Community Living. Thank you. It's not really obvious for me. Some days I'm like, Oh, I appreciate the grace on that one. So any interagency collaboration that has you guys jazz that you all are a part of, and it's okay if you don't know of any, like, right off top your head, because it's hard to get the entities to

Unknown: 36:37

it's a very phenomenal question, and it's a question that that, unfortunately, probably doesn't have a ton of like, like, a response about it, but I will pause and let my good friend Tony go, because I'm really not coming up with anything, and that's

Natalie: 36:53

okay. I mean, I might not go ahead Tony

Unknown: 36:55

well. So I think the national strategy is a good example of that, right? And I think that there's more that, you know, we definitely can do but, you know, think of it this way. The Administration for Community Living really oversees this entire process. And you know, every few months they have a public raise advisory council meeting, and they'll bring together. So just for a little bit more background, and I say this raise Advisory Council, there's non federal members, so those are family caregivers, or those with family caregiving experience, and then there's federal members, right? So each of the federal agencies that are included in the national strategy have a representative that comes and reports out on what is happening with the national strategy. So I think that's a really great example, and I think it's where the Administration for Community Living has said really wonderful job in terms of leadership. I think there's definitely more opportunity to figure out, you know, how we can cross pollinate some of this work. But I think that is a really great example, and can be kind of an example at the state level, right? We work with a lot of state advocates who are like, how do I make sure that, you know, Department of Labor is talking to Department of Health, and I think this is a model that can be implemented at that state level. Good

Natalie: 38:07

points. I'm working with a triple A out of Richmond, Virginia, who is trying to figure out there's some legislative changes, and there's the grand families and kinship initiatives, and they're trying to keep kids with families in the home setting and at all cost and so and I support that like we've got to support our grand families and that sort of thing, but some of these kids will be caregivers, potentially for these individuals as well. We have to recognize that, but they're trying to figure out, hey, we need to bring social services on the child side and adult services, we need to have them cross over. And who do we bring to the table? How do we bring to the table? So I think you're right about the national strategy being a good example of, can we bring people to the table? And when can we start getting a universal language where we all can agree on so that we can start moving forward, because I think the lack of universal language between government entities and the non federal and non government entities, I think that can be hard, if you think about it. So all right, well, let's, let's move along. We've got, oh, we got a couple more minutes. Okay, wait, wait, wait, Todd, is there anything that is burning all over you right now? Gosh, I like number nine. I like number nine.

Unknown: 39:23

All right. I'm flipping down the number nine. Let me go there. So number nine. All right, so let's talk about the future direction and policy priorities. So looking forward, what are the policy priorities for your organizations in relation to caregiving youth? So Marvel. You want to start with that, sure. So you know, a big part of our policy parties right now are around recognizing that the demographics of the US are changing quite dramatically, and so you're talking about a more black and brown representation across all demographics, across all ages. Hands, and recognizing that those policy priorities for us means, you know, we have a system, whether you want to call it the health system, you want to call it the mental health system, you want to call it caregiving. All of those are really constructed without marginalized communities in mind, which is, you know, kind of a typical thing when you talk about systemic isms and things like that. And so part of our push has been, how do we from a policy perspective, and how do we from a rubber meets the road perspective, change the things that we're doing so that we do have a revisioning of some of these policies and priorities, as well as our tactics in delivering resources and supports to caregivers that are through the lens of marginalized communities. So for instance, we just wrapped up, and I just saw a snippet of a preview today, so it'll be live on our website next week. But we've for a few years now, had a blueprint for caregivers of individual mental health issues, and we took that blueprint through some grant support and re envisioned it after some round table conversations and really some great deep dives, to now have a complimentary blueprint, this blueprint for black caregivers of children with mental health issues. And the reason we did that is because, one, there's far more literature and recognition that you know, black and brown individuals when they are in engaging with the health system on behalf of their care recipient, that they are dealing with several additional layers that are making it much more difficult for them to receive services. And so recognizing that, you know, being second guessed, not being heard, you know, not being respected in the sense of their opinion, or being put in a certain stereotypical category really prevents them from being the advocates that they need to be, or for the services thing to reach out to. So from a policy perspective, for us, it's about, how do we bring equity into this space in a way that recognized that one, you know, whether we see it as an issue or not, you're going to end up with by 2040 you know, baby boomers will be the last generation to have a majority white population among 65 and older. Okay, so every single generation after that is projected and exponentially growing to have a much more diverse demographic. But the systems that we're trying to, you know, continue to improve upon were still really built with not marginalized communities in mind. And so I think from those policy perspectives, we see a really great opportunity. But the last thing I want to say is that kind of forward looking. Personally, I think one of the areas that is going to become more and more critical for us to recognize is that the highest, the fastest growing population of homeless, unhoused individuals are older adults. And so you couple older adults being the fastest growing area of unhoused you couple that with kinship relationships youth caregivers, and you can see a problem that's going to start to rear its ugly head more and more, because the second fastest growing group of unhoused individuals are teenagers. That's right. So you've got a really interesting kind of completion of policies that I don't think we've even thought of how to start to address it. I could be wrong about that. You know, there's some really good models out there, like bridge Meadows out west, they do some really great work with kinship housing and bringing families together that are grandparents and kinships that are caring for younger adults. But recognizing that we really do have to start to think about housing alongside caregiving, because I don't know if we can have a contract for understanding what caregiving looks like first for the unhoused, but it's happening, but we don't have eyes on it, and nor do we have a policy perspective that gives us the ability to address it or even to describe it to legislators. Oh

Natalie: 43:42

yeah, that just took me to church. You took me to church. Let me tell you, right now, you got me fired up on the housing stuff, because housing is a real problem in the US and affordable housing. So let's just make it a little bit harder, affordable housing. Affordable housing. So okay, Tony, I'm ready, but that's a hard one. Follow, but I got you

Unknown: 44:01

NO and NO Marvel. I think it's really important that, you know, we think about how caregiving intersects with so many of these issues, from housing to voting access to food security. And I think, you know, a lot of times we think of things in silos, but we really need to think of it through this, like intersectional approach on the next side of things you know, data advocacy, something that you know, in in the blood of the National Alliance for Caregiving since its founding, and the national strategy recognizes that, you know, as of 2022 there has been no major body of work to provide information about the experiences of caregiving youth. And similarly, there's little information on the impacts of sibling caregiving. So promoting and advocating for finding ways to make sure that data is collected is something that is really important to us. I would also say that in terms of legislation, one piece of legislation that we've endorsed and. And are really excited about is, you know, the Lifespan Respite Care Reauthorization Act. So for those who don't know, the lifespan respite program empowers coordinated state systems to provide accessible, community based respite care services. In the Senate version of this bill, not only does it reauthorize funding, but it updates the definition of family caregiver to ensure more individuals can access support that really reflects the diverse caregiving landscape, and part of that is the definition to include caregiving youth right which, right now are not included. So that's something that we're following, and we think really has some potential on the national level to have some impact. And then also, you know, in our programs department, we are working on some reports related to mental health and caregiving, as well as transplant caregivers, which are inclusive of youth as well. And then the last piece that I'll also add is we recently launched a new initiative called the caregiver nation network, which is really about creating this toolkit for supporting state leaders, where there's already so much happening on the ground in the caregiving space, providing them with the resources they need to kind of get to the next level in their advocacy work, and part of that includes peer to peer learning and caregiving peer to peer learning opportunities around caregiving policy issues, but also elevating their voices on the state and national policy agenda.

Natalie: 46:28

This is good stuff. I really hope our friends at nashp, National Academy of state health policy, that's where typically your government leaders go. And I know that conference is coming up. And then, of course, advancing states, which is home and community based services, that's a fantastic conference. These are, these are great places, you know. And I bring these up because there are different ways. And this is my last question, you know, kind of as we conclude, what are immediate actions or ways that people can get plugged in, like, how do I advocate? Because some people may say, Hey, I'm not really that comfortable going and talking to my legislator. I'm not really sure a parent. Really Sure. Apparently, I have to have an elevator speech. It's like speech. It's like 60 seconds. So what are ways that you might say to our listeners, this is how you can get plugged in and your use your voice. Marvel. Any thoughts? Oh, Tony, you go first. Oh, sure.

Unknown: 47:17

No, yeah. Sorry if I cut you off. There more. But I'm deferring to you, because I feel like I've been jumping in ahead of you. So like, please, politeness. We love this. We love partnership. Yeah, I mean, so the first thing I would say is, you know, you can join our act on raise campaign. So if you go to actonrays.org, there's an opportunity, if you hit, join us, to join the campaign, either as an organizational partner or as an individual advocate. And every month, we send out a variety of advocacy alerts with opportunities to sign on to letters, opportunities to reach out to your legislators. And we try to make it as easy as possible, right? And the reason we do that is we know the family caregivers are busy, right? We want to it's be as easy as a template or just submitting your name to support things. And so I would definitely say that's one place to start. And I would say the second thing is, you know, call your legislators, right? You don't have to always have that exact pitch. You can talk a little bit about what your experience is. There are people at the offices who are there to listen. I, you know, as a chief of staff for a state senator for two years. And during that time, you know, we would get calls all the time and people wonder. They're like, do you real? Do people really track and what's happening? And they do. We note down when a constituent calls and has, you know, see if there's an uptick on certain issues like caregiving or like labor or workforce development, right? So I think that's the second piece. And then the third piece is, I just want to give a shout out to so many of the youth that are utilizing social media to share their stories and their voice. We've seen this with Tiktok. We've seen this with Instagram, Twitter. You know, you they may not have necessarily the resources to get out there to the hill, but social media is a great way to make your voice heard, and I appreciate the youth who have been leading the way on that work. Point,

Natalie: 49:07

very good point. That's a very good point, because our young little influencers know how to use their voice, and have lots of hundreds and 1000s and 1000s and 1000s of people that are following them and commenting. So Marvel.

Unknown: 49:21

Now I could not have said it better. I think that being able to start with what you have and where you are is the most important aspect. So if you see something like Tony's, if you send the social media, forward it to your legislator, if you are sitting there and you want to just record a voice memo on your phone and email to them, do it, whatever makes it easier for you, because your stories and coming from your perspective, sharing your individual story as a constituent is really what moves the needle in elected offices, period, for them to understand your story, one it helps them to make the case. Because we all know policy is not policy. Policy is storytelling and. Every single time it's storytelling, at least the ones that are successfully passed, you know, and some that don't, but recognizing that your story really does have a lot of power. And so don't minimize the fact that you, you, you, you may have had a good day or bad day or neutral but recognizing that being able to share that perspective brings you uniqueness to that storytelling aspect of policy making, you know, and being able to share that in a way that's easy for you, with your legislators, with their offices, with their local city council, up and down. You know, the ballot, as they say, is really important aspect of it, but starting from where you are and not feeling as if it's this monumental task, but instead, the story you have inside of you is really what's going to move the

Natalie: 50:42

needle? That felt good. You guys are the best. Todd, I have been so blessed today. Like this

Unknown: 50:49

been incredible. I mean, it's great. The interaction has been great. We didn't we didn't even get to some of the questions. So

Natalie: 50:56

they're so good. But you guys are so awesome because you touched on all the little pieces that we knew we really were important. And I think you guys are gonna have blessed so many people with your words of wisdom and guidance and recommendations. So I hope if you just take one thing away today and act on it, you know, do that. Take one thing, you don't have to do them all. If you do one thing, that's a good start. And even just showing up today and listening and learning so you can tell someone else, that's a pretty good start. So Marvel Tony, Todd, thank you guys for being part of the caregiving youth hidden in plain sight series. Todd, of course, with my care friends, who is our partner with the sisters, JJ will be so jealous she missed this one, guys, until we confess again. We'll see you next time. Thanks so much for listening. Well, friends, that's a wrap for today's educational episode. Thank you for listening to our special series, caregiving youth, hidden in plain sight. And don't forget to visit our website to sign up for our monthly newsletter, sign up for the free sisterhood advantage discount club, and, of course, connect with us on Facebook, Instagram, LinkedIn, Tiktok, Twitter and Pinterest. You'll also find the video recording of all our episodes on the confessions website and our YouTube Channel. We'll see you next time when we confess again you.