In this episode of Caregiver Conversations, hosts Kristie King and Antonia Harbin Lamb sit down with Nicole Jorwic, Chief of Advocacy and Campaigns at Caring Across Generations. Nicole shares how her lived experience as a sibling and granddaughter of people with disabilities has fueled a lifelong commitment to care advocacy. From shaping policy to driving national campaigns, Nicole breaks down why investing in caregivers is essential to our country’s future. She also offers insight into current legislation, the state of the care economy, and why storytelling is a powerful tool in systems change. This conversation bridges the personal and the political, and also reminds us that caregiving is not just a family issue, it's a national one.
Guest: Nicole Jorwic, Chief of Advocacy and Campaigns at Caring Across Generations
Key Themes & Topics
Contact Information:
Caring Across Generations
Southeast Michigan Senior Regional Collaborative (SRC):
Elder Law and Advocacy Center (ELAC) : Phone: (313) 937-8291, nlsmichigan.org/elder-law/
Kristie: [00:00:00] So welcome back to Caregiver Conversations where we explore real stories, challenges, and solutions that matter most to caregivers. I'm your host, Kristie King, executive director of the Southeast Michigan Senior Regional Collaborative,
Antonia: and I'm your co-host Antonio Harbin Lamb staff attorney at the Elder Law and Advocacy Center.
And program manager of Great Lakes Legal Mediation division Today we're thrilled to welcome Nicole Jorwic, chief Program Officer at Caring Across Generations. Nicole is a nationally recognized policy expert in disability aging and direct care workforce advocacy. She has spent her career shaping policies that expand access to home and community-based care support caregivers, and strengthen protections for direct care workers.
She also brings a deeply personal perspective to this work. She's the sister to Chris who has autism, [00:01:00] a former direct care worker. And a caregiver for her 90-year-old grandmother with Parkinson's Disease. Nicole, welcome to the show today. .
Nicole: Thank you so much. I'm so happy to be here and I'm right in the, in the neighboring state of Illinois, so glad to be with my Midwestern friends.
Kristie: Yes, indeed. Illinois is my place. We are definitely in neighboring states to good states, and so you seem pretty busy, Nicole, you got a lot going on with work, with family and all that. But let us start by really talking about the state of caregiving today. We know there's a lot of things going on and you work at the forefront of care policy.
What are the biggest challenges facing family caregivers and direct care workers right now?
Nicole: Yeah. Well, I mean obviously the biggest challenge for every family caregiver is unique based on circumstances. But when we look at the policy landscape generally, there's a lot of problems that we're facing. Uh, the lack of a real.
Robust, uh, care infrastructure. And [00:02:00] by that I mean well-paid direct care workers. I mean, for anybody who needs care, knowing that when they need it, it's gonna be available. We do not have that system in this country. So, and there's also a lot of threats to the current program that does exist, which is funded by the Medicaid program.
The Medicaid program is under risk of some, some major cuts at the federal level, which is, is only going to make the issues at the state level even worse. Because we know that, um, even in states that are doing, uh, well, like states like Michigan in terms of funding, that there's no state that can make up any difference.
And there's even those well performing states are not paying those workers what they deserve. And so in order to have what we need, we have to address the workforce crisis from a policy perspective and really look at Medicaid and how we can shore that up. And also make sure that Medicare, . Is covering long-term care, because right now, so many people assume that it is, but it doesn't.
And so those are some of the policy issues that, that we're, [00:03:00] we're facing every day. And that definitely do keep me busy. Um, but I'm definitely inspired by my personal story and, and the fact that I can't even solve these issues as a quote unquote national expert is just an indicative of how big these problems really are.
Antonia: We're talking about home and community-based services as a major priority to the care movement. Can you explain why HCBS, I guess I, I didn't recognize that as the, um, the acronym, but HCBS is so critical and what changes need to happen to improve access. And you did talk about Medicare, Medicaid, but is there anything further than that?
Nicole: Yeah, absolutely. So Medicaid, um, HCBS or Home and Community Based Services is the part of the Medicaid program that does pro provide that support in the home and in the community. Um, while the program is over 40 years old, it has never been appropriately funded by the federal [00:04:00] government, and it also has left home and community-based services as an optional program.
What that means is that states . Can make waiting lists, they can cap how many people they're serving, which they can't do for mandatory services. So we have to address that issue and make sure that, um, the home and community based services that are not optional for the people who rely on them are also not optional under the law, because what that looks like is waiting lists.
What that looks like is people not having . Access to the full scope of services that they need. And we know that 95% of disabled people and 90% of older adults wanna age in place, but that is not where the money is. So we really have to look at making sure that we're funding home and community-based services, and yes, also looking in Medicaid and yes, also looking at Medicare to see what we can also do to make sure that that benefit, that that
Um, that that system also covers long-term care. Um, there were, were some proposals about that. Brookings Institute came out with [00:05:00] some, some proposals. I did an article with Georgetown in the fall because we did polling at Caring Across Generations. That shows that 93% of Americans believe that Medicare should cover long-term care.
The bigger issue though is that 66% are really confident that it does and it doesn't . Yeah. And so in order to get to the policy wins that we need, we need to make sure that folks have that understanding. And the biggest thing that needs investment is home and community-based services. To get back to that HCBS,
Kristie: and as you said, we know that people don't know what is not offered or available until they're in that situation.
And we definitely hear a lot about waiting list and the needs there. So. You know, definitely understand that. And so as we continue to shift and talk a little bit more about care policy, what are some of the most important policies at the federal level that impact caregivers and the direct care workforce?
And so that might be a part of Medicaid or Medicare, those federal dollars that actually come [00:06:00] down.
Nicole: Yeah, so there's obviously Medicaid and Medicare are our core programs. Um, and I'll get back to those, but for, for supporting family caregivers, there's also a lot of support outside of that. Um, there's respite services, so that, and some of that can be funded by Medicaid, but respite services so that somebody, um, who might be, uh.
being a caregiver for someone who has dementia or Alzheimer's, has that break to take care of themselves, to take care of their own, um, errands and that sort of thing. That respite being, you know, what it, what the Latin word means, is that really that break. Um, those, those services are incredibly important.
But when it comes to family caregivers, you know, there was a big raise, um, the raise caregiving, uh, bill that, uh, that passed . Hmm, five or six years ago that had a lot of, a lot of different recommendations for caregiving PO for ways that we can support po uh caregivers. But the number one one was [00:07:00] addressing the underlying policies.
I. Systems like Medicaid and Medicare. Um, because the best way that you can support a family caregiver is making it so that caregiving is a choice. So often caregiving is not the choice because so many of us are doing it because there is no other option. Um, obviously for folks that wanna do it, whether it's paid or unpaid.
We should be supporting that. But right now, that's not the, the, the world that we live in. Per the national partnership on Women and Families, $1 trillion of unpaid care is provided by family caregivers. The only way to address that is to provide, to create those systems of support, to create systems like, um, a fully funded Medicaid home and community-based service system without waiting lists.
With that care provided by a well-paid workforce. Because we don't have a lack of direct care workers, we have a lack of good direct care jobs. How many people in, you know, [00:08:00] kindergarten classrooms are going in asking, asking somebody if they, you know, you wanna be a firefighter? Do you wanna be a doctor?
Do you wanna be a lawyer? Do you wanna be a teacher? All obviously wonderful professions, but we're not asking those same questions about direct care workers, even though it is a really good work. Because who would be encouraging people to go into a job that pays 12 to $15 an hour on average in this country when it should be paid much more than that.
And so we need to also address the, the low wages of the workforce in order to address the need needs of family caregivers and have robust paid leave policies so that if you're having to do short-term caregiving, you can do that without fearing losing your job or, and your employment.
Antonia: You actually already discussed about how there are major workforce shortages in direct care and even what's causing this crisis and what type of policies that can be implemented at this point.
So I, I [00:09:00] kind of wanted to actually ask if there are any systems or I guess examples of systems in place. Around the world or something that we are basing a model on right now or trying to achieve, is that something that even exists or are we creating this kind of as we go?
Nicole: In terms of a model of a workforce that's well paid, there are certainly in many other countries, it is not the case where direct care workers are, are making, you know, minimum or minimum wage or less.
That's, that is a purely American problem and that is something that is rooted in, uh. Um, racism on misogyny because so many on anti-immigration sentiments because you have the vast majority of the direct care workers workforce are women, women of color, and immigrants. And so the devaluation, devaluation of those groups of people along with the devaluation of the people that they're providing care [00:10:00] for disabled people and aging adults means that it's been this.
Big problem that has been allowed for some reason to be ignored. And that's also why, because of the decades of ignoring a problem, it's gonna cost a lot of money to fix it. Um, but I know that all of us hopefully, will have the ability to age all of us, hopefully, will have the ability to care for people that we love because they're also aging.
I'm sure all of us would agree that the people that we're entrusting that care to should be paid what they're worth. And that is much more than than minimum wage. Um, and so that is something that we need. We need to look at the historical roots, obviously, and also make sure that we're addressing it moving forward so that the direct care work, work that is such an important profession is something that I could encourage my three or 4-year-old niece to go into because.
Those same kids that are showing a love and a care in, in the [00:11:00] education system, because we do have inclusive schools and all of those things, we need to be encouraging that, um, instead of putting them, but that's only gonna happen if we can make it a well-paid job. And so many of the generations of women who have been doing this work deserve that as well.
Kristie: Something to look forward to something different, something outside the box. So I wanna talk a little bit about the personal side of your caregiving, and with that I wanna kind of roll in a little bit about caring across generations. So you have both the professional expertise and the personal experience as a caregiver.
How did you land here? How did you land at caring across generations? Exactly. What does caring across generations do? We didn't really talk about that in the kickoff. And so what do they do and how does that roll over into your work professionally and personally?
Nicole: Yeah, definitely. I was a direct care worker all through high school and college, and then I went to law school.
But part of why I did all of that is because my brother Chris has [00:12:00] autism, but actually he's not the, my first connection to the disability in aging space. I. Um, before Chris was even born, I was in the first included classroom in my school district many, many decades ago. Mm-hmm . So I've been very lucky in that disability has been part of the fabric of my life.
Um, and so has intergenerational and multi-generational care. Um, I'm, my, we, uh, in my bio you talked about my, my grandma who's actually 91, um, now. And has Parkinson's and I have, my other grandma is 93 and has a variety of health issues, but she's the one who cared for us when my brother, when my parents were off trying to.
Different, uh, treatments and therapies for Chris. Um, so not only has disability and part of fa the fabric of my life, but that intergenerational care and the way that we can all come together and the inter interdependence of all that has been something that I was always exposed to. I went to law school.
I got into supporting, um, students with disabilities in in education. [00:13:00] And, um, wanted to , which is ironic considering how untrue it is. I thought maybe if I stopped doing individual cases, it would stop being so emotionally taxing. . Yeah, that was funny. Um, but, and so for a, a little over, uh, well. 12 years now, I've been doing the policy side of things.
So I started in Illinois, um, as the institute at the Institute on Policy for, for people with disabilities. And ultimately, uh, went to the arc of the United States for about seven years. But what really attracted to me to carrying across generations, um, was when I was at the arc is when care can't wait.
The, um, the movement and campaign started and the Care Can't Wait Movement. Um, it was started by, by AI Jpu, my . Boss and, and co-conspirator mm-hmm . Um, caring across generations because so often those of us who are fighting for home and community-based services are fighting for scraps with folks that are also fighting for [00:14:00] childcare or paid leave.
And so really the vision of holding the whole is part of what really attracted me to carrying across generations and carrying across generations. Is as an organization over, um, almost 13 years old, and it, it was created by Agen, um, AJ P and Sarrita Gupta to build a movement of family caregivers, those who need care.
So disabled people, aging adults and care workers to build the caring future that we've been talking about. Um, for the last. 20 minutes. Um, and so that's what's been really important to me and the work that we're doing, is that we're not trying to do something that only helps access to services on the backs of workers or only, um, advances the uh.
The needs of the workers. It has to all be, it just like the care is interdependent. So do the solutions, um, need to be. And we also are really focused on building a narrative and a culture where care is not seen as this [00:15:00] individual burden, but as is something that we all have a responsibility to solve for and we have a collective need to solve for.
Antonia: And we often just kind of a little transition here to give us a little bit more information, but we often hear about how caregiving can be isolating and overwhelming. We all can identify with that. What advice do you have for caregivers who are struggling to find support?
Nicole: Um, that's I first I would just say I see you, um mm-hmm
To caregiver that are in that situation. 'cause I think so often it does feel like this isolating experience that nobody understands. Um, and so I would say, you know, that that's just important. And also to . I would give the advice to, you know, find your community. And I'm not talking about, obviously, hopefully everybody has, you know, those communities in their lives, their families.
But that doesn't mean we talk about it. Um, [00:16:00] that doesn't, I, so when I'm saying find your community, I mean talk, find your community of people that understand the complexity. Uh, the joy, but also the pain of being a caregiver because that will make you feel less alone in it and, and allow you to continue to, to provide the care that you need to provide.
Um, you know, I. Um, I had my brother Chris here with me yesterday, and he was, you know, yelping and, and making a lot of noise and doing things that, um, that are how he experiences the world. And I found myself being, you know, shushing him or what have you, and I felt really bad about that and I needed to be able to talk to
My other friends who have those same experiences so that I could not like, take that on and feel like a bad person and instead have that conversation. Um, and so I think it's really important to have those outlets so that you can keep doing the work that you need to do to provide the care for the loved [00:17:00] ones that, that we're so lucky to have.
Kristie: Absolutely. When we think about the future of caregiving and what that looks like. For our listeners who will wanna get involved in advocating for better caregiving policies, what can they do? You've talked a lot about the policy changes and investments that are needed, but what can the listeners do to get more involved in advocating for better caregiving policies?
What does that look like?
Nicole: Absolutely. So some of it is getting the word out, not Yes. We, and I'm, I'll talk a little bit about how you should be and, and can be reaching out to the people who represent you, but it's also about having those conversations and about some of the policies, um, with, with those circles of support, whether they're caregiving or not.
Um, in a world that can be, especially in the political world, can be a little bit complicated. Right now, these issues are actually, have extreme amounts of bipartisan support. And so some of that is that the way that we make that bipartisan support turned into bipartisan [00:18:00] policy and action is by making sure that more people, so it's not just reaching out to your legislators, which is really important, and that includes state legislators, but also the folks.
That are representing you, so your house member and your senators. So Senator Slotkin and Senator Peters in Michigan. Mm-hmm . But also making sure, and you don't have to be an expert on Medicaid or Medicare or paid leave. All you have to talk about, all you have to be an expert on is your own story. How the care that you're providing or the care that you need and aren't, don't have access to is impacting your life.
Talk about why that needs to change and why they need to make investments to make that better. Um, and so folks can and should join the, you know, caring across generations, caring across.org/join us, um, uh, or any of our social media channels, um, from, you know, Instagram all the way to Blue Sky, where, where we're there and you'll see our action alerts and, and those sort of things.
But those action [00:19:00] alerts are going to . prompt you to do what I just said, to share your stories, to make sure that that, um, those that are representing us understand what it's like to be a caregiver and what is needed for caregivers and the people who we care for.
Kristie: So we definitely wanna connect with.
Caring across generations and going to their site. And Nicole, we wanna thank you so much for sharing today. Sharing yourself personally as well as professionally, your work and care policy and advocacy is really making a difference. And I know that personally and we appreciate you helping us shed some light on these critical issues.
So just to reiterate a, be a little more detail on it, for those that wanna learn more and get involved with you guys over at Caring across Generations, where can they reach you?
Nicole: Um, all of our handles are really easy 'cause they're all the same. So it's at Caring across GEN. Um, you can find us there for me.
I'm just also really easy just at Nicole Jorwic, um, which [00:20:00] is just how it sounds. But, um, you'll see my name in places and we are making sure. We hope that you join our network because ultimately a lot of our goals right now are protecting what we have. But we are, don't, don't, uh, don't you worry. We are also going to be turning to, and continue to work on what we need to build, um, in order to help every family caregiver and every person who needs it.
Um, it's gonna be a lot of protecting this year. Mm-hmm . But we are not turning, uh, away from the building.
Kristie: And we're definitely, even with the um, senior regional collaborative and our caregiving coalition, we are connected as well to caring across generations. And so we do promote that work and forward that work at our coalition table as well.
Thank you again, Nicole. And to our listeners, if you found this conversation helpful, please subscribe. Leave us a review and share this episode with caregivers and advocates in your community. Four more resources and updates. Follow us on social media or visit [00:21:00] www.se mirc.org. You can also reach us at info, that's INF o@miseniors.org or go ahead, give us a call, 8 8 8 3 4 1 8 5 9 3.
Antonia: And to learn more about Neighborhood Legal Services Michigan, visit www.nlsmichigan.org. Or call 3 1 3 9 3 7 8 2 9 1. Until next time,
Kristie: take care and keep caring.