The Age Guide: Perspectives on the Aging Journey

Caregiving with Compassion: Creating the Care Economy We Need

• Age Guide • Season 1 • Episode 10

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We want to shine a light on the commitment and dedication of the more than 44 million family caregivers who take care of loved ones, providing 4.7 million dollars’ worth of care every year.  A family caregiver is defined as an individual who cares for a loved one with a short-term or long-term disability or illness. Also known as an informal or unpaid caregiver, they provide invaluable care to those who need some degree of ongoing assistance with everyday tasks on a regular basis. 

On October 3rd, AgeGuide hosted its first Aging Summit, where we created a space for meaningful conversations around age, longevity, and inclusive communities. On this episode, the “Creating The Care Economy We Need” panelist will explore how we can support informal and paid caregivers and grow this important sector of the Aging Community. The panel included Marla Fronczak AgeGuide’s CEO,  Paula Basta the Director of the Illinois Department on Aging, Philippe Largent the State Director of AARP Illinois, Amy Brennan who is the Executive Director of the Illinois Family Caregiver Coalition and Katie Fielmann, the owner of Comfort Keepers. Let’s listen in Marla Fronczak, AgeGuide’s CEO, Kicks off the event. 

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SPEAKER_00:

Hello, and welcome to The Age Guide, perspectives on the aging journey. We are here to be your personal age guide and enhance your quality of life on the road ahead. We want to shine a light on the commitment and dedication of more than 44 million family caregivers who take care of loved ones, providing$4.7 million worth of care every year. A family caregiver is defined as an individual who cares for a loved one with short-term or long-term disability or illness, also known as an informal or unpaid caregiver. They provide invaluable care to those who need some degree of ongoing assistance with everyday tasks on a regular basis. On October 3rd, Age Guide hosted its first aging summit. where we created a space for meaningful conversations around age, longevity, and inclusive communities. On this episode, the Creating the Care Economy We Need panelists will explore how we can support informal and paid caregivers and grow this important sector of the aging community. The panel included Paula Basta, the Director of the Illinois Department on Aging, Philippe Largent, the State Director of AARP Illinois, Amy Brennan, who is the Executive Director of the Illinois Family Caregiver Coalition, and Katie Feilman, the owner of Comfort Keepers. Let's listen in as AgeGuide's CEO, Marla Francik, kicks off the panel.

SPEAKER_03:

I'd like to start first by asking each of our panelists to give some insight on what they think our society can do to support a healthy and sustainable caregiving system for our future in which we see The demand is poised to grow. First, start with Director Besta.

SPEAKER_04:

Well, thank you very much for inviting me to be on this distinguished panel. Caregiving has been with us before the pandemic. It's going to be with us as it was with the pandemic, and it'll be here even after. And we will get through it, and we do. But I think that it's so important that we talk about what we at the state level are doing to support our caregivers. And I want to make sure that you see that from the state We have approached a care economy that dignifies and values the work and the value of all the caregivers. And so our focus is a multi-pronged strategy. We have done things like huge rate increases, over 40% rate increases since 2019, which have gone directly back to the caregiver workforce, right back to those folks who are doing the actual work. And again, I want to just say, again, a big shout out to the Aging Network and to all of our in-home provider agencies agencies and caregivers. When the pandemic began in March of 2020, they were the only ones going out. They were the only ones getting on the buses, getting on the transportation to take them to see the older adults in their homes to make sure that they were going to be safe and stay alive and stay healthy and well. And so we are, I like to say that we are sort of like the Marines of human services. We are the front lines and you all have done an amazing job that continue to make me humble to represent you as I go and talk about the amazing work that you do that all of us have been doing. But you have kept our older adults healthy and safe. You have saved lives. And I cannot thank you enough for doing that. In the meantime, what we did was early on in the pandemic, we asked for a waiver, which helped us make sure that we could employ family caregivers. so that they could get paid to take care of their loved ones in their homes. So we were able to do that through Appendix K. And that continues to this day. Do you realize, I'm sure many of you do, that in March of 2020, we went from what we would probably deliver maybe 500,000 meals maybe in a year, we went to a million home-delivered meals a month during the pandemic, through those years of the pandemic. Over 60% increase in the home delivered meal program. And we know for a fact, many times now what we're finding is people still need those meals. We're going back out again. Our case managers are going back out again. Our adult protective service folks are going back out again. They're seeing that this was a program, that nutrition was a huge program and nutritional need is a huge program to keep older adults safe and in their homes. And so we're targeting a lot of our funding to make sure that we sustain the home delivered meal program. So I think caregiver per se are all throughout that theme. It's very seamless how we care for caregivers and by the services we directly fund and that all of you provide. So it is with those caregiver lens that we make sure that we're giving the caregivers what they need to help sustain them. It's not easy and it's complicated. So I just wanted to highlight a couple of the things we're doing and I also just wanted to make sure that you know that we're here to do more and we know we need more to do. So I hope that gives a little bit of an answer.

SPEAKER_03:

That was very perfectly put because it really takes all that wraparound to make sure that we're sustaining caregivers in the community. I'd like to direct the question to Felice.

SPEAKER_01:

Great. Thank you very much. Thank you for the invite. It's a delight to work for AARP and to be on the team. But look, here's what I want to say. AARP is a partner in the community to try to get Illinois to be the best state in the country when it comes to supporting caregivers. I have been in meetings in my previous roles in my life, in my professional where federal CMS, the agency that runs Medicaid and Medicare, have basically said, Illinois, one of the biggest challenges you've got is you're putting way too many people into institutions and you're not doing enough to keep them in community. We have got to continue to work to change that. So one of the things that AARP, I'll mention two things. One of the things that AARP worked on some years ago was allowing employees to use some of their sick time, to portion some of their sick time for caregiving specifically. I think it's significant. The other thing that I want to mention, and this is something that I love, and I would love everyone in this room to help us achieve, is a tax credit for caregivers. AARP Illinois has... introduce legislation in Springfield to provide a$1,500 tax credit for caregivers. So$1,500 off of your taxable state income in support of expenses related to caregiving. absolutely, positively has to happen. It's a significant move. It can be quite expensive. So this is a heavy lift from a legislative standpoint. But certainly, if we're going to cut people's taxes, one of the groups whose taxes we should cut are people who are taking care of their loved ones at home and keeping them out of more expensive care setting. So I would love to have everyone's support for that proposal when we go back into the spring session.

SPEAKER_03:

Turn it over to Amy Brennan.

SPEAKER_02:

You know, I know a lot of us on this panel, caregivers, have family members who are caregivers. And, you know, when you're in it, you, you know, not only I heard the words invisible patients, definitely, you know, and there's such, caregivers are such an important part of the whole team of caring for the loved ones So I agree with what Diane said earlier, and also the guilt of never feeling like you're doing enough. But also, I know when I was in it, and even after I was in it, trying to make sense out of what just happened after my mother battled lung cancer for about 16 years. And the last six or seven months, I was lucky enough to be able to take a leave of absence from my job to be with her. And that was a gift. But when you're in it, even though I have a large family, you still sort of feel like you're alone. Because every week, every day, there are new diagnoses. There are new things happening in caring for your loved one. And you're researching at night. You're messaging people on Facebook who you know know a lot about the system. And so thinking that you're alone. So those statistics were so helpful for me to hear in the last couple of years And so thank you for doing the heavy lifting of discussing those statistics. So I'm the executive director of a new organization. Again, that as I was in it, I'm thinking, wow, you know, after working in and around the state capitol and knowing the powerful lobbies down there of the long-term care industry, of the unions who do such a wonderful job of advocating for the direct care workers, but I'm thinking okay, but who's here to talk for the unpaid family caregivers? And so that's the reason that we came together in this last six or seven months to create a new organization thanks to Marla and her colleagues all around the state, the AAAs, the Area Agencies on Aging. They said, let's create, and with the help of a large grant from the Retirement Research Foundation, some great help from the Illinois Department on Aging as well and a couple other sources, we created this coalition. So we're very new. So here are some things that I just want to share just as we get our coalition started. The main goals of our coalition as we come together are to do three things. To create a statewide, very broad-based, with many voices at the table, to have input. To look at best practices. In Illinois here, there are a lot of great things happening, both with what Director Dr. Basta was saying at Department on Aging that they've been able to add to supports and resources for family caregivers, but also let's look at other states and see what other things are happening around the country, even other countries. Denmark, I'm hearing, for example, is fantastic at providing supports for caregivers. So building the coalition, looking at best practices, including the RAISE Act, which is just coming from the federal government, recommendations to all the states and at the national level of more things we can do. And the third thing then is more public awareness. Helping with what Diane and Leslie were saying a few minutes ago of the self-identity that's, you know, what is it, 19%? Is that the percentage? That number still blows me away. That folks don't think of themselves, they just think, oh, I'm a daughter, I'm a son, I'm a spouse, a sibling, you know, I'm just doing what, of course, you know, family members do, but no, it's real. It's real what, you know, you and your loved ones are doing, and you deserve, and there are supports out there, and we want to get more to you. So,

SPEAKER_03:

thank you, Marla. Thank you, Amy, for highlighting that, and now we'll turn it over to Katie Feldman.

SPEAKER_02:

Thank you. This has been a wonderful, wonderful program today. And it's hard to even add to what was just said already here. But as some of you already know in the audience out here, that I represent more of the private paid caregiver. And it has been a heck of a couple few years. I'm sure everybody in this room can agree with that. And I would say that I am extremely proud of the work that not only my caregivers, but all the other agencies in the room What they did over... They were there, like you had mentioned, right? They showed up every day, and they did their job, and I couldn't be any more proud to be part of that. One of the things that I feel that... From my side of it, what we need to do moving forward is really, really focus on the caregiver, whether it's a paid caregiver or a non-paid caregiver or a family caregiver. And again, I think there's other people in this room that represent agencies like mine that would agree. Right now and moving forward, it's all about supporting them, recognizing them for the job they've done and the job that they're doing because it's amazing, and validating their work. I think that's so important. I've been in this for a little over 20 years now, and it's such a different... industry and world than it was when I first started. When we first started, nobody knew of home care. Nobody really took us seriously, to be honest with you. And again, it's very different. And now it's like the day of the caregiver or the year of the caregiver. We really need to recognize them, validate them for what they do every day. And I also believe we need to work on providing them with a more stable job. We need to figure out ways to provide them with, again, a stable job. Caregivers work usually not guaranteed hours from week to week or month to month. I think that's very difficult on them. I know in my company and I know many other agencies out here as well, that's what we're really working to try to solve and bridge the gap because they deserve to know what they will be making in the future. And unfortunately, that's not how the job description is now. So that's really important to us and I'm sure to many other people. So I really believe it's just all about supporting them in every way we can and have an open mind. And it doesn't always have to be done the way it was. You know, we need to change.

SPEAKER_03:

Thank you. Very well put, Katie. We really do need some innovative thinking right now to really address this as we see how the role of caregivers, both paid and non, are really essential to caring for our loved ones. So I'm going to open this up to the panel in general, and any one of you can jump in. But do any of you have anything that you can share with everybody on how policy is maybe can contribute to building a care economy that dignifies the work of the caregivers, as we've been saying, but also expands access. So there are a lot of middle-class families that are struggling with affordability and being able to access care and long-term care policy. has not really taken a role in really addressing those home and community-based ones. So does anybody want to give some insight into how policy can maybe

SPEAKER_04:

help? Well, I mean, I can jump in a little bit. You know, I think policy is a lot about advocacy. And it's going to take all of us in a collective voice to be the ones to talk about all that we do, all that we've been doing, and all that we will continue to do. And I think we're the voices that need to be heard, both legislatively, to all of the people that we elect so that they know that what you all do is so incredibly important and that it continues to need support and services, that your services are life-saving. So I think there's that advocacy piece that we are the best voices to talk about. All of you who go and are working every single day at those senior centers, at all of our congregate dining sites, at the home health agencies, as caregivers, as supporting caregivers, loading in that information into TCARE, all the data that you give to the state of Illinois, we want to make sure that we're going to collect all that at the end of our fiscal year to show the legislators why why what we've done with the dollars that they gave us was so important and they need to increase those dollars. So again, we have to continue to tell our stories but also be the strongest voice in the room.

SPEAKER_02:

One of the organizations I used to work for during the time I was caregiving for my mother was a large bank. And Chase had a great system of, they call them BRG, business resource groups. And these were wonderful groups that focused, so they were employees, made up of employees, who focused on, say, veterans. They identified themselves as veterans or LGBTQ or Gen X. And those groups are very powerful if you work in a larger organization. I was just on a call a couple weeks ago where someone from Meta and in the high-tech industry was saying that they used the influence and the employee power at their organization to have the BRG influence their HR and their benefits department to talk about what more can we do to support the family caregiver. So those are just a couple of kind of concrete things that I would throw out there.

SPEAKER_03:

Katie, anything from the Home Care Association?

SPEAKER_02:

I'll just add quickly that we are, along with Comfort Keepers, and I know a bunch of the other major franchises out there as well, that we're supporting the national strategy to support family caregivers right now. And so we're really keeping a close eye on that and trying to advocate as much as we can to support that whole initiative. So...

SPEAKER_04:

Thank you. Thank you for that. And I just want to say a shout out again to your point about private companies, corporations. I think they need to be part of our policy and strategies for aging and aging networks. So all of us who work either in nonprofit, in government, but if you work or know folks who work in private industries, in corporations, bring up the whole idea. What about in your EAP program, your caregiving? Do you have any caregiver programs that you're offering? Anything you can continue to do. to do to not silo How we are caregivers, or caregiving as an important issue for all of us, again, in the four categories, would be amazing. And it's, again, all of you, all of us who work in those areas and work as we do every single day telling the stories of how we care for loved ones, you need to make sure that you continue to tell those stories or ask those questions.

SPEAKER_03:

And it really is that economic impact that employers their space with that loss of productivity. And people have to quit their jobs because they don't have that flexibility in place for them to be able to do it. And oftentimes, it's women and persons of color that end up losing their economic security. from doing caregiving and things like that. So getting the employers to recognize that you have good, valuable people and really having those combinations for that caregiving is, it should be a top priority.

SPEAKER_04:

And we have a great aging network. I see Tracy and I see, we have great senior centers that are huge resources. I see Elizabeth. We have great, and Fox Valley folks. We have great adult day services, ADSs, that people don't understand that could be helping caregivers. You can continue to do that. We have rest We have hospice programs. We have a network already in place, but we can continue to talk about that with all kinds of other employees, employers across the spectrum to tell them the aging network is here and we are strong and we are resilient and we're only getting better. So come and help us be part of the solution.

UNKNOWN:

Woo!

SPEAKER_02:

One of

SPEAKER_03:

our final questions that we're going to ask the panel, and then we're going to also give them time to, again, as Amy just said, give you some calls to action here, because we're all about when you leave here today, we want you to be empowered, and we want you to be able to advocate. One of the bigger questions that we posed to the panel were, how can our system center gender and racial equity to construct a care economy that serves all families?

SPEAKER_01:

In a previously I used to work for a group of health care providers called federally qualified health centers or community health centers. They're a fairly large network of providers in the state. Now, today, they probably serve upwards of three or four million people a year, and their clinics are located all over the place. They serve mostly low-income people. Medicaid, and they've begun to increase the amount, the number of folks who are qualified for Medicare or who are dual eligible for services under those programs. And they provide primary care, dental care, mental health. So my point is... When I think of breaking down barriers, I always think of the fairly qualified health centers. To the extent that those clinics are or are not involved in being part of the age-friendly community and supporting caregiving, they should be. And so I would encourage any of you who have got connections to fairly qualified health centers, get those guys involved. They've got resources. They're community driven. 50% of the board of directors of a health center must be patients of the health center, so they are really in the community, all not-for-profits, so they should be open to those kinds of conversations. We just need to continue to break down barriers to care. We just have to continue to do that. Certainly, if we're going to commit Illinois to being the best age-friendly state that it can possibly be, or the best state in the country for caregiving, breaking down those barriers to care has to be front and center.

SPEAKER_04:

For us, I mean, I think we have to bring a DEI lens to everything we do. Everywhere we go and however we look at that. But I think one of the biggest pieces we've done at the Illinois Department on Aging is to to tackle that by looking at our training and think about how do we train folks who are out there doing and providing the services so that they are having an equitable lens to do the work that they do as they are the ones who are out in the field. So to that end, I think what I want to make sure you all know, at IDOA, we were one of the first agencies that did and started an equity advisory council. And so within a state agency, and within the governor's office now, we have an office of equity, that because the governor makes sure that he knows that we see throughout the entire state, all state agencies have to bring an equity lens to the work that they do, which is stages of national organization services and advocacy for GLBT elders. So we want to make sure we bring that lens to everything. Again, our African American, our brown and black communities, they don't access our services as much as they could. We need to talk about that. We need to be welcoming. And how do you show that? I think you show that by how you talk and the language you have in all of your brochures or all the places and the things that you all do. Yeah. So,

SPEAKER_02:

Marla, it's a great question. I know in the past couple legislative sessions, there's been a great focus on diversity, equity, and inclusion. And I know the administration is doing a great job at looking at that and addressing that. The bad news is there have been, as folks here probably know, some pretty rough reports coming out in the last year or so, and then most recently, about the long-term care industry in Illinois and some of the inequities with Medicaid facilities versus non-Medicaid. We definitely have our marching orders. Just like we were saying with the pandemic earlier, it shines a light on the things that we know we can do better. I know You know, I've seen some good commitment to addressing the inequities. And I would just say then, you know, on a more positive note, that, you know, definitely, you know, there are concrete things and calls to action. Like we were talking about before, you know, be an ambassador. But be an ambassador, whether it's in your families, in your work networks, in your friend networks, to shine a light. That was an excellent segue,

SPEAKER_03:

Amy, into really our calls to actions. So before we jump to that, Katie just wanted to give you an opportunity. So I'm going to go on to you, and I would like for you to kind of tell the group, give them kind of a little call to action, and then I think we'll have time for a couple questions from the audience for all of you, too. Okay.

SPEAKER_02:

I would just say stay informed. Really, a lot of things you just said about, you know, Get involved, right? And attend programs like this on a regular basis. I know in my business, we get so wrapped up in the day-to-day and a lot of times you can't get out. But coming to a program like this raises awareness. So having more and more programs... be involved in the different groups in the industry. And like I mentioned a little bit earlier, we're very involved in this national strategy to support family caregivers. And a lot of part of this is to change legislation and to add tax you know, deductions and tax credits. One of the, I was looking over the legislative and policy changes with this, and one of the things that kind of really jumped out at me was encourage clinicians and providers to conduct formal assessments of family caregiving needs. I really, I could go on and on about that, but I think that's really important. And really, to just sum it up, I think we just all need to stay involved, attend programs on a regular basis and spread awareness.

SPEAKER_01:

It's interesting. I know that when people on a panel start talking about legislative action, a lot of eyes glaze over, and mine too, and I've been in this business a long time. But let me tell you, we can win. We can get some of this stuff done. It is not impossible. There is no reason why Illinois can't enact a tax credit for caregivers. Zero. If enough of us get together and do the work, we can make it happen. Look, AARP is still celebrating, giving Medicare the ability to negotiate drug prices and capping insulin costs and capping out-of-pocket costs at the federal level. We've been working on that a long time. They hired me, and then it got done, so I'm the good luck charm. arm, I suppose. So they're still celebrating that in Washington. But we can get stuff done here in Illinois. We absolutely can. So do not let that, oh, Springfield, oh, legislature, don't let that get in your way. It can happen. We can get this stuff done. We can turn that$1.6 billion into another number to do even more great work in the community for the Department on Aging. We can absolutely do that, too.

SPEAKER_04:

Stay engaged. Get vaccinated. If you're already vaccinated, get boosted. If you're already boosted, get your flu shot. Get your third booster. All you can do is do everything you can to stay healthy. And if that's what it takes, please take those messages seriously. IDOA also has a whole campaign that we're doing throughout the state around vaccinations, boosters, because there is so much confusion. But it is still one of the best ways we're going to get people to stay healthy and safe. So if you've already done it, thank you. Continue doing it. Continue to talk to your loved ones, your family, your friends, your colleagues. Make sure you talk to our older adults who are saying, oh, isn't the pandemic over? No, no. You need to get vaccinated. You need to get boosted. Please, all of you, stay healthy and well. It helps all of us.

SPEAKER_00:

Thank you for listening to The Age Guide, Perspectives on the Aging Journey. We hope you learned something new on this podcast because we all have a stake in promoting a high quality of life for people on their aging journey. Age Guide coordinates and administers many services for older adults in Northeastern Illinois. We serve DuPage, Grundy, Kane, Kankakee, Kendall, Lake, McHenry, and Will Counties. Our specially trained professionals are available to answer questions and connect you with local service providers and resources such as the Family Caregiver Support Program, which provides valuable resources for those who are giving unpaid care to adults 60 plus or to someone with Alzheimer's disease or a related disorder. The program includes caregiver resource centers, respite services, gap filling services, legal services, caregiver counseling centers, training and education resources, and support groups. If you are interested in these services or want to learn more, go to our website at hguide.org. Call our offices at 630-293-5990. Please follow our podcasts so when we post our monthly podcast, you are notified on your streaming account. Thank you, and we will see you next time on the Age Guide, Perspectives on the Aging Journey.