Home and Community Care: Our Path to Lasting Economic Recovery

Just Economy Conference – May 10, 2021

 

Caregivers have long been the silent and undervalued backbone of the economy, providing nearly $500 billion in unpaid labor. COVID-19 has laid bare how essential caregiving is, and how inequitable supports for care are – caregivers are majority women, and care workers are majority women of color and immigrants. Family caregivers face tremendous economic hardship, often paying out-of-pocket for home care that isn’t covered by Medicare or spending down their assets so their loved ones can receive Medicaid, while care workers do some of our nation’s most important work for poverty wages. This session will show why home and community-based care is at the center of any just and equitable economic recovery from the pandemic, and key to equitable development in the future. America is aging, and we are facing down a generation-defining economic shift that has already hit women and communities of color hard. We must act now to seed a recovery that is immediate, sustainable and just. Investing in caregiving and care infrastructure will have swift and immediate economic impacts because it creates jobs quickly, spurs job growth in other sectors, and ensures financial stability for Black and immigrant women who disproportionately provide direct care for others as well as their own families. This session will offer a holistic view of what it will look like to build the just, equitable care infrastructure that everyone, including historically marginalized BIPOC communities, need, while providing a visionary look at what our nation could look like when we support, value and visibilize all of our care needs. We will examine how care fits into recovery in the next year, while also looking forward to how this issue will shape community investment, equitable job creation and retirement security for the future, including practical steps around research and development, policy and systems change.

Speakers:

• Josephine Kalipeni, Deputy Director of Family Values at Work and Strategic Advisor, caring Across Generations
• Grace Diaz, Member of Filipino Workers Center
• Nicole Jorwic, Senior Director of Public Policy and Executive Officer of State Advocacy, The Arc of the USA

Transcript

NCRC video transcripts are produced by a third-party transcription service and may contain errors. They are lightly edited for style and clarity. 

00:21 

Hi everyone, 

Diaz, 00:23 

Good morning. 

Kalipeni, 00:27 

Thank you all for joining us today I’m at the just economy conference for this particular panel conversation that we’re calling home and community care our path to lasting economic recovery. My name is Josephine Kalipeni. I am the Deputy Director of family values at work and a strategic advisor for caring across generations. And I’m going to be in conversation today with grace and Nicole. As we talk about why homecare is an important part of our economic recovery. We all care caring is what makes us human. Yet caregivers who are majority women have long been the silent and undervalued backbone of the economy, providing nearly $500 billion in unpaid care. I want to say that again, the uncompensated unpaid care that many women caregivers provide to our community, our loved ones, our children, family members with disabilities, our aging adults is upwards of $500 billion in value. Most caregivers are majority women of color and immigrants and are paid poverty wages for this essential work. And up until now, we all know that the economy has only worked for a select few of us and left many of us in the dust. The numbers don’t add up in a way that is evident that it works for all of us. We have seen stagnant wages while the cost of living continues to increase. And this includes the cost of care due to structural racism, including medical racism, racism in our tax code and housing policies that keep black families and people with disabilities from building intergenerational wealth. Black indigenous people of color and family caregivers often take on greater personal costs to provide care paying out of pocket, often leaving jobs earlier and spending higher proportion of our income and more time on care than our white counterparts. We know that the pandemic drew attention to how care work is consistently underfunded, and undervalued. But our economy and culture has long devalued care, because it’s often seen as the work of women and the work that happens behind closed doors. The economy has never worked for People with disabilities Nicole and I talk about this all the time. We’re forced to live under the poverty line Justin receive the services and that we need through Medicaid, which is one of the only providers that you can get homecare from. At the same time older people and people with disabilities live in constant fear that services will be cut. And we’ll be forced into institutions because we play the nickel and dime game to these essential services and programs. So we know that the Coronavirus has laid bare how essential caregiving is and how an equitable supports of care our and our elected officials are finally after decades of advocacy from the disabilities community from the worker justice community from the immigration community, and from the caregiving community, our elected officials are finally starting to give real value to care. As we can see from Biden’s recent announcement of his plan to invest $400 billion in home, home and community-based care and to strengthen the care workforce. Now is the time to demand what we need and to change the trajectory of our futures and how we get to age live in our homes in our communities long into our later years. The care supports that our families need come in many forms, from Universal childcare to comprehensive paid leave to long-term services and supports that help our elders and disabled loved ones stay at home and in their communities. Today we’re here to talk about how home and community-based care one of these key supports is essential to building the just and equitable care infrastructure that everyone, including historically marginalized communities need. And I am so excited to be joined by grace and by Nicole, I’m going to ask each one of you to introduce yourself and to tell us your connection to care. Let’s start with Grace. 

Diaz, 05:12 

Good morning, everyone. My name is Marie Grace Diaz. I’m a Filipino immigrant residing in Los Angeles, California. I’m an active member of Filipino Worker Center, a caregiver for almost 18 years. All through those years, I took care of senior patients with a lot of different conditions such as an simer, Parkinson disease, Lewy body dementia, stroke patient, multiple scoliosis, and many others. I am undocumented for 13 years. 

Kalipeni, 06:03 

Thank you for sharing that Grace, your courage and your bravery. Nicole, let’s go to you. 

Jorwic, 06:10 

Yes, thank you, Grace. And thank you, Josephine. My name is Nicole Jorwic,  she her hers pronouns. And I’m the Senior Director of Public Policy and senior executive officer of state advocacy for the arc of the United States. We are the largest community-based organizations serving and supporting people with intellectual and about developmental disabilities and their families. This work is something that’s personal to me though, because I’ve been both a paid direct care worker before when I was working my way through college and law school. And also I am a family caregiver. My brother Chris is 31 and has autism, and is a much better advocate than I am. I also deal with the aging side with two grandmothers who have pretty significant needs ones with a Parkinson’s diagnosis. So definitely very much respect and value the work that grace does. And glad to be here to talk about this extremely important issue. And a time where as you said, Josephine, it’s getting a lot of attention. 

Kalipeni, 07:09 

Thanks, Nicole. Thanks, Grace. Let’s dig right in and really get into the meat and heart of this conversation. Nicole, talk to me, you and I talk about this all the time. Talk to me about what our current systems of caring for older adults and disabled loved ones looks like now. And tell us about your experiences and your family’s experiences for about caring caregiving, and what is and isn’t accessible. And this is such an important conversation to have. Because so many people think, you know, when I’m ready, I’m going to be able to access exactly what I mean when I need it and where I need it. 

Jorwic, 07:51 

Yeah, and that’s such a really important point Josie because I think that really what we’ve learned in really the past five years because frankly, a lot of the interest that’s going on politically right now is because of so many of the threats that have come Under the systems that we’re talking about, and when I’m talking about the system, really the main game in town that I’m talking about in your references in your opening remarks, is the Medicaid program. And a lot of folks don’t understand that a lot of people think that when they get to a point where they need a nursing home, or really people are avoiding nursing homes Now, obviously, especially since a pandemic, thankfully, but if you, you know, when, when you might be aging and need some home health care, or you have a child with a disability who might need support, some A lot of people think that that’s going to come through the Medicare program, Medicare actually does not fund any long term services and supports outside of an acute short term acute care stay, or rehabilitation from a surgery, something like a stroke, something like that very short term. So anything long-term. So that’s when we’re talking about long-term care or long-term services and support, which is the term we use more now. That is what really the main funder for that is Medicaid. And Medicaid is a program that’s very complicated. It’s a program that is overseen by a federal law, but it is run by it as a state and federal partnership. And it’s a program that is run by states. And the reason there’s lots of reasons why that matters, part of it is because it’s called different things in different states. So when some of those threats have come about in the past five years, a lot of people didn’t even realize that the services that their families were relying on or that they themselves were relying on were paid for by Medicaid. And Medicaid is a program that is bold, it was created in 1965. And so it needs a lot of modernization. It’s also a program that has very strict income and asset and eligibility requirements that leave a lot of people out or require people to go into poverty and stay in poverty in order to access the services that they need. This impacts the disabled community. It also impacts people with just with older adults who, you know, might have spent a long time saving up so that they could leave something behind for their families and then can’t do that in order to access to the services they need to live safely and healthily. Medicaid also needs to be modernized in the fact that it has what we call an institutional bias. What I mean by that is that Medicaid has an entitlement to institutional services. So that means anybody could receive those Nursing Home Services or institutional care because a lot of people don’t realize that in 36 states, still people with disabilities are being served. And I use that air quotes but are being kept in large institutions still, including my home state of Illinois. And that’s my home state of Illinois, unfortunately, and Josie, I know, we’re both in our home state. It’s not a great example, for a lot of things. It does create good advocates, though. But the reason for that is that Illinois is one of those states that still has those institutions and heavily relies on nursing facilities as well for older adults. And so because of that, that’s where a lot of the funding is going in that broader pool of long-term services and support. And because people who are eligible have an entitlement to those services, there’s not that same entitlement to home and community-based services. Those services are optional under the federal law that oversees those state programs. And because of that, there can be a waiting list. And so in Illinois, there are 20,000 people on the waiting list. And frankly, that’s only people who know that there’s a waiting list to be on. And there’s a lot of disparity in terms of access to information around the services that are available for people with disabilities and aging adults, which is a huge and important factor. And even a lot of the workforce that is providing these services don’t realize the funding that pays their paychecks in the end, the problems in the system that lead to the low low, low wages for people that are providing homecare people that are direct support professionals, personal care attendants, all of those wages are funded through Medicaid, and those wages have been stagnant for decades. Nationally, the jobs are less than $12 an hour and we’re talking about this life-giving important care. And so these are then workers that are having to work multiple jobs. And in poverty when they’re doing work that is just is so incredibly important. And I know that from a personal perspective, because without that my brother was one of those 20,000 people on the waiting list. So my personal connection to the issue is, you know, we were one of those families that when people with disabilities moved from the entitlement, meaning the guarantee of services in the education system, to the adult services, some depending on the state where you live outlook can be very, very grim. And so without it, there’s an overreliance on unpaid family caregivers. And there continues to be a lack of individualized program. Because of the lack of investment in community-based services at the state level, and the federal government, and that leads to people not getting services, including my brother, which has led to different regressions, behaviourally medically at different points in time. And ultimately, we really need to focus on this because of the inequities for the workforce and also around access to services. So there’s a lot of work to do. But this attention is really good and well-timed. 

Kalipeni, 13:31 

Thanks, Nicole, um, such good information there. I think the thing to remember is that most people think they’re going to get a lot of home care from Medicare. That’s not necessarily the case. Because homecare, and overall long-term services and supports can be expensive, most people can’t afford it out of their own pocket. And so most people rely on Medicaid and Medicaid needs to be updated needs to be invested in order to really meet the current demand. And the other thing that you said that I think is really important is we have to think about this in a comprehensive way that is that considers the needs of the person who needs care, and considers the needs of the people who are giving care, which are family caregivers, and which are workers like you used to do. And Nicole and like you grace. So grace, tell us your experience. As a care worker within our current system, what have you seen? What’s it like? What are the things you want to elevate for us? 

Diaz, 14:37 

In our current system, right now, caregivers and recession, essential domestic workers actually have very, very low wages, as Nicole have said, some of us are even been by the day, not by the hour, we will below the minimum wage. And also, aside from the low wages, we lacked benefits, we don’t even have no health insurance. And because of the low wages, also, we don’t have the resources to save for our retirement. And because of the nature of our work, we have job insecurity. Also, what scares me most is losing my job at the blink of an eye, because I don’t have any savings and have no access to unemployment benefits. I have to hold multiple jobs to have job security. My sister was even commending I’m one of the few person who’s so happy to be working six-day is over any day, another. I want to see Miss quipment of undocumented workers by my agency that I was working for, because they knew for a fact that I was undocumented during that time I experienced even training a new caregiver, but ending up getting less days of work because she was legal. A lot of undocumented essential workers are being treated badly, because when abused, they stay silent so as not to be deported. 

Kalipeni, 16:58 

Grace, thank you so much for sharing that with us. I think it’s easy to not think about all of the different people that are affected by our current care system as it is it goes all the way to the workers. And I know our care system is unaffordable for people who need care. But it’s also really sad to consider that people who are providing care can’t even make enough to care for their own families. And that’s definitely something that we need to change. Nicole through though the pandemic has highlighted that family caregivers are essential and need supports. That what that caregivers need support and caregivers have lacked meaningful support for decades. What are the actual economic impacts of a failing and fractured care system on your family’s love in our in our communities? 

Jorwic, 18:00 

Yeah, I mean, I think that the I mean, the first one is the historic underemployment and unemployment rate of people with disabilities, and a lot of that, too, is, again, because of the strict income and asset limit requirements in order to continue to receive the services that they need to work, people with disabilities can’t work more. And so one major economic impact is on people with disabilities themselves who want to be working more, but also family caregivers, families have to make decisions about promotions and advancements based on their care responsibilities. The Harvard Business School study came out a couple of years ago, that talked about 80%, I believe, of family members have a factoring in their caregiving responsibilities and turning down advancement and that sort of thing. And that’s not that didn’t surprise me at all. It surprised others. But it didn’t surprise me. Even if you’re not directly responsible for a person with a disability or aging caregiver, that doesn’t mean that the needs of that individual are not part of any factoring that you’re doing. Whether it’s moving, whether it’s how much time you can spend away. We also obviously know that there are, as I mentioned earlier, huge racial and cultural components or an access to care. And, and a huge mentality of obviously, some cultures have a strong history of taking care of their own. And there’s nothing wrong with that. But there’s an economic toll. If we’re providing the care for our own, then that means that we’re not working outside of the home typically, or if we are, we’re working outside of the home too much, and then also working inside of the home. And that’s not something that we should be building an economy around. And that’s something that so what for so long, the care system has been built on the back of those unpaid family caregivers. And that does have huge overrepresentation of women, on women of color, not only providing the paid work, work, but also providing the care for family members who are outside of the service system. We also know that there’s really no respite support and respite support is something that’s a very small, unfortunate, unfortunately, line item in the federal budget and also a very small line item in state budgets. And that’s support for a family member who may have someone who hasn’t in a dementia diagnosis or Alzheimer’s, or who has significant support needs and has disabilities. And sometimes they might just need that weekend away. So that not and I’m not talking about for vacation I’m talking about so that they can do something for work, or so that they can have that support. But even those temporary supports are not available in any great way. And so all of that, together means that we have a service system that for people with disabilities, especially there’s an over-reliance on aging family caregivers, and so then what happens you have people entering service services in a crisis, that’s always going to be more expensive. And so again, all the pandemic has really shown what as a disability community and as aging communities, which is that people are filling in the gaps here is filling in the gaps. And it needs to be recognized, so that it’s paid, it’s paid for, either by the family members that they want to continue to be providing that care, or that family members can rely on good care, because those jobs are well paid, because people that are doing the work that grace does deserve to make family-sustaining wages, and that it also gives peace of mind to family caregivers so that we can go out and be part of the economy and so that people with disabilities can as well.  

Kalipeni, 21:51 

Yeah, thanks for sharing that Nicole. I’m, you know, from my own experiences, and watching my mom and watching friends around me, the impacts on family caregivers, and the lack of support that there is for family caregivers is just huge. And I often say that we’re setting up a generation of family caregivers to age into poverty ourselves, because like you said, where you know, cutting back on work and having to turn down promotions and having, you know, to stop pursuing our careers to move back home or in there’s just all of these impacts that then impact our long term earnings and our long term savings and our ability to really set up a future for ourselves and our families in a way that’s just economically devastating. And of course, more economically devastating for black and brown women, especially black women with disabilities who are already, you know, disincentivize from being in the workforce, and all of those impacts are our multi-generational impacts. They impact our future families and they impact the people that have cared for us that now need us step in and care for them. And it’s, it’s just a terrible cycle that if we don’t disrupt and invest in now will continue to perpetuate things that will continue to make families economically unstable in moments of crisis when we need the most support. Grace, the pandemic has inequitably impacted women, we know that we see that we feel that right, all three of us on this panel can you can really claim to that, but especially black and brown women, can you tell us about what have been new opportunities and challenges the pandemic has posed for the health and financial well being of you and your family? 

Diaz, 23:51 

I have actually gotten more work during the pandemic, I used to work 12 hours, but now I’m working 24 hours. For the safety also of the senior patient that I’m taking care of the advantages, you get paid a little, a little more. But this advantage is I don’t get to see my family, I only have one day a week to be with my family now. Our baby so minimal, that you want to work more hours. But if it comes at the cost of the time you get when your family, you know you you’re taking care of seniors all the time, and you barely have time to take care of your own family. Which side also.  

Kalipeni, 25:00 

That is sad. I can understand that. Because wages are so low when there are more hours, it’s an opportunity to work more and to make more and yet that takes you away from your own family. The care work that you have to do that you’ve chosen to do takes you away from caring and investing in your own family. So great grace, how are they investing in care? How will investing in the care infrastructure, encourage equitable job creation and shape community investments to address how care has been consistently devalued in our culture? 

Kalipeni, 25:59 

I’m not sure Grace, if we can hear you. Is it just me? 

Diaz, 26:08 

I believe that for our nation’s economic development, I think it’s reasonable and fair that we get paid. Um, can you hear me now? Can you hear me?   

Kalipeni, 26:41 

Yes, we can hear you now. 

Diaz 28:28 

Give me a second. Can you hear me? Invest in making domestic work quality jobs for our economic development. And I think it’s just reasonable and fair to get health care, insurance be able to take vacation once in a while a bereavement leave, and also to be able to save for our retirement. These are some benefits that are very common to some other jobs or industries, but not to ask domestic workers, also, undocumented workers, essential workers, I sincerely hope that there would be a chance for him, for them to have a pathway to citizenship to have equal opportunity that this will transform the workforce and our ability to have the wages and benefits we need in so many people need care right now. So investing in worker Would not only create new jobs, but would help other people and families. These jobs allows others the word, it is the word that makes all her passive. So we are definitely essential work. 

Kalipeni, 28:49 

Thank you Grace, I don’t know, a better definition or example of essential workers than you and what you describe in your work. And I think it It is worth noting that investments in our care infrastructure really means an assurance for families, that they will be able that we all will be able to get the services that we need when we need them. In real investments in the care infrastructure also expand services, air, particularly at this, particularly at the state level, because state budgets are so strained, they tend to limit the types of care that are available. And the week have seen Nicole and I can talk about all of the care deserts that we have seen where there’s not enough workers, there’s not enough services and the services are really limited. And the more we invest in commune in, in our care infrastructure, the more services and programs that we’ll have in our community. The other thing that I think is a direct outcome of investments in our care infrastructure is that we will have more people working, I think we tend to forget that people with disabilities and older adults are still contributing members, to our economy and to our job force. And without the investments in the care infrastructure. Those are jobs supporting services. And we miss out on such a plethora of diversity and expertise. If we’re not investing in our communities and in community and community care. At the end of the day, we’re all either going to need care or receive care. So we all have a personal interest in the conversation that’s happening at the national level that has raised the spotlight on care, but also in demanding that we really modernize our care infrastructure and make real long overdue investments in our care infrastructure. And it can’t be small that the care infrastructure that we currently have has been underfunded for decades, which means to level it up to where we need it to be just for current demand, requires a large investment requires an investment, minimally equal to the value of the uncompensated care that family caregivers give, which I will remind you is upwards of 500. That’s where we’re at. And that’s what we need. Um, Nicole COVID has also revealed how dangerous and dehumanizing nursing homes can be, and institutional settings. And we know there was a time when instance where the breakout was happening throughout nursing homes. And then, you know, a lot of community care and adult daycare centers shut down, really revealing the gaps in our care infrastructure, particularly for people with disabilities and particularly for older adults. That’s why many of us are advocating have been for decades to move from institutional care to care in the home and in the community. Again, we know the statistic that over 80% of people want to age and heal and live in their homes and community increases interaction decreases isolation, right? There’s just lots and lots of benefits to it. How does prioritizing the needs of disabled people help center a better care system for all of us? And why is this key to a more equitable and humanizing care infrastructure? 

Jorwic, 32:45 

Sure, well, I mean, I think when we’re centering the needs of people with disabilities, ultimately what that is doing is centering the need to invest in-home and community-based care. And there’s a saying that goes that if you make something work for people with disabilities, it’ll work better for everyone. I mean, I think if you think about just simple things like some of the access that came through the mayor kids with disabilities act that all of us take for granted and benefit from every day. It’s a really silly example. But it’s one really concrete example. We have learned that, even when we’re talking about things like how do we improve health care generally, as we’ve moved into those spaces, we’ve been able to see things like if you’re not thinking about home and community-based care, when you’re talking about things like you know, healthcare, generally modernizing healthcare, generally, then you’re not actually thinking about the needs of everyone. And so we know that as we’re moving towards a better care system, when it comes to supports in long-term care, that that is going to look like building the alternative to those dangerous large congregate settings. And it’s really important that everybody really thinks about that, that the home and community-based services are the alternative to nursing home, nursing home care and institutional care. And I think we haven’t done a good enough job of kind of explaining that. But frankly, unfortunately, the tragedy that has happened in COVID, as during Kob, in the pandemic, as COVID, ran through nursing facilities and institutions like wildfire, I mean, in Illinois that were to the National Guard was called in because two of the state institutions had over half of the people were infected. I mean, these are things that unfortunately, didn’t get the same national media attention as the nursing facilities. But again, that’s why we have to continue to center people with disabilities, because sometimes it’s not always getting the attention. But we also know that COVID has punctuated the inequities in segregation that has been around for years, we know when we look at the definite infection rate of enlarge congregate settings, there was a huge racial disparity, which shows how much and how much inequity there is an access to home and community-based services. And so we really need to look at creating a system that is based on quality outcomes, that is based on equitable access, and end results, and results. And also that the workforce is being judged on those results, that they’re not being judged on antiquated methods that they’re being judged on good outcomes and good quality for, for the people that they’re supporting. I’m sure Greece can talk about the amount of unnecessary paperwork that gets in the way of actually providing care. And we have to make sure that self-direction as a concept that, you know, really is about people with disabilities, with any support they may need directing their own care, we have to listen to people with lived experience both people with disabilities, and aging adults, as well as the workforce that supports them when we’re rebuilding the system. Or else we’re just going to keep building one broken piece on top of another broken piece, which is, frankly, how we’ve gotten to where we are. We need to make sure that that we’re supporting all people in their homes and communities. Again, I mentioned that the inequity or the disparities when we look at the death and infection rates on long-term care facilities. And so we have to make sure that we’re getting into populations that might not know about that the alternative to nursing and facilities, or just generally any of the long term supports at all, because again, there’s so many people that are just doing it on their own, we have to make sure that we’re getting into an educating everybody. And we must have to continue to build career ladders in the workforce as well. We have to make sure that direct care jobs can lead to careers and advancement, and that we’re dealing with making this a workforce that gets the respect that they deserve as the essential workforce that grace just laid out so much more eloquently than I could, I mean, that’s been the biggest frustration at the arc. About a month into the pandemic, I wrote a blog and we started a campaign around hashtag, we are essential because I just wanted to throw things because it just didn’t seem like Congress or the general public understood how just in the same way that nurses and other frontline health care providers, were doing things that obviously were heroic and should be applauded. direct care, the direct care workforce, direct support professionals, homecare workers are doing things that couldn’t be done from six feet away without access to PP out access to hazard pay. And I mean, we just have to make sure that that this essential workforce also raises up as we’re as we’re fixing the system, as well, or else it’s going to continue to be an inequitable system. Yeah, I 

Kalipeni, 37:37 

Yeah, I think that yeah, that’s so much good information. That I think it’s critical to think about how we rebuild and how we invest, particularly as we’re looking for alternatives. This is the alternative there are, you know, many other alternatives and we have to think about it comprehensively. So, a lot of my colleagues will often call me out because I truly believe that care and caregiving is at the center of everything. And that if we invest and disrupt the current cycle that we have on care and caregiving, it’s one of the single most transformative things that we can do to change the economic trajectory of all of our families. And I can connect care and caregiving to anything because I think it’s so deeply connected. For example, I don’t think that we can talk about caregiving without talking about paid leave. Many family caregivers are working caregivers, and when you have to take off to go check on, you know, when I had to take off to come check on my mom, I was lucky to be under an employer who had paid leave, but there are many people who don’t have paid leave, right? There’s so many connections to care and caregiving because it’s central to everything. So my question to both of you is why is care at the center of everything? And how is it connected to various issues, you know, like, mortgage banking, and real estate and retirement planning, and many, many other things. I think it’s easy to sort of think about this as a siloed issue for people with disabilities and for aging adults, and to miss the interconnectedness of caring caregiving to everything. So Grace, what would you say about that? I think you’re on mute grace. Oh, no, Grace, I think we’ve lost your sound again. Now, we still can’t hear you. We still can’t hear you. Nicole, do you want to go while Grace is sorting out her sound? Sure, sure. 

Jorwic, 40:22 

Sure, sure. So I mean, I think that there’s obviously Oh, sorry that I heard. I mean, I think that we know that we have to do more than then it’s a lot more than just access to services. We know that there has to be 

Diaz, 40:44 

 We are scared here are tasked with being there you go. Okay, we are scared easier and helping people stay in their home, and providing support and encouragement to hold on. That’s good. Can you hear me now? 

Kalipeni, 41:02 

Yes, we can hear you. 

Diaz, 41:19 

Okay, notice of providing care and helping people stay in their home, and providing support and encouragement to our patients. But we don’t have any type of security ourselves. retirement security for caregivers is a huge, huge issue like me, I’ve been working for 18 years. We can make enough to save for our retirement, I can make I can eat when save for my retirement. We care for other people’s family is but we don’t know that. We’ll have that care when we get old. More investment in care means that I would be able to have more access means that I would have I won’t be scared into losing my job. And that I would spend more time with my family. And of course retirements to repeat . 

Jorwic, 42:41 

Yeah, that’s all super important. And I mean, I think that it’s not just about right. It’s not just about taking care of the workforce, that are taking care of so many people now it’s also about making sure that they can’t, that people that grace who should be able to can make can rely on the fact that they can retire safely and have the services that they need as They age and the finances that they need as they age, which is, again, why we have to fundamentally get to this issue. We also know that we have to make sure that we’re we have enough housing stock not only for people with disabilities and aging adults, but also to for the workforce and making sure that there’s that people don’t have to have stress around access to housing, it’s gonna it will, the access to services will ultimately make that the housing simpler, because right now, sometimes you’ll be in a state where there’s enough housing stock, but there’s not enough services. And it really has to be both. And we obviously also know that employment will improve for people with disabilities, when you’re investing in the workforce. So often, I hear stories about people who are, you know, have a job coach who makes less money than the person that they’re supporting in their job. I mean, there’s just so many fundamental things that will shift for making these investments. And ultimately, it will allow us to turn to other problems that hinder people with disabilities and aging adults, including income and asset limits and Social Security. Again, the things that make people with disabilities and aging adults unable to save, unable to, to build their own financial independence and to keep them keep them poor in order to access the services they need. So there’s so many different ways that this funding will, will have an impact and, and multiple things besides just the HCBS system. 

Kalipeni, 44:37 

Thank you both for that I’m so I think we’re all sitting at the edge of our seats, because we’re at a tipping point when it comes to valuing invisible eyes and care, and the policies that we need to make the caring future we want possible, feel like they’re within reach, right? They feel like this could be the year, I won’t even put it out into next year like this is the year this is the year we’re going to really relay the foundation for the care infrastructure that we need, and then the subsequent years will build on top of that. But what would you say it will take to make that economic recovery equitable, especially for the most marginalized? And what do you want the economy to look like for the next generation of caregivers? We’ll start with you, Nicole.

Jorwic, 45:27 

 Sure. I mean, I think that what it what it will take for the neck economic recovery, to be equitable is for it to be seen as something that needs to be a continued investment. I when we look at the Medicaid home and community-based service space, we had a year with nothing a year with no investment. And so in March, we were really glad to see it in the American rescue plan, one year of funding, but really, that was about plugging holes in a sinking ship. Frankly, that was money that should have been passed in March of 2020. And so we have that. And now really states look at that investment as a bit of a cliff, because it’s only for one year. So now we have this huge opportunity of this $400 billion investment included in the American jobs plan. And this will no pun intended, but be the bridge to a system that we ultimately need to get to where everybody does have access to the service that they need, that we’re making sure that we’re reaching into communities that might not know about the services that are available. All of that has to be has to occur. And so ultimately, what will what our goal will be after the $400 billion investment will need to be get to a place where every person in the service system knows that they can have access to those home and community-based services will fundamentally deal with the institutional bias that might be a next-year problem. But the huge investment is going to get us closer to what I want the economy to look like and what I want this system to look like. And that’s really a service system. That’s, that’s so rich, literally, that has the funding that it needs to pay the workforce with a family-sustaining wage. That people with disabilities and aging adults and family caregivers have that reliable workforce, so that they can have access to anything the support that they need without fear of someone not showing up the next day, because they got a better opportunity down the street and that I would never fault the worker for making more money. And that’s the unfortunate situation that we’re in. I want there to be a system where we have parity across the states when it comes to the services available and support and supports as well as supports for workers. This will also mean people with disabilities and aging adults and family caregivers will have the same freedom to relocate that anyone else does. No waiting for services and equitable access and understanding of those services. We have people in some states that are waiting over 10 years for services, some people dying while they’re waiting for services that just cannot happen. And ultimately that will be that will create a thriving care infrastructure which is going to lead to economic growth for the workers for the people with disabilities. adults who want to remain part of the economy want to be part of the economy have enough opportunity to do so. And family caregivers who are filling in those gaps in the services. And we know that this private problem is growing, we have a population that’s we know that a billion people with autism will be aging into the adult service system in the next 10 years. This has to happen, or else it’s just going to get worse and worse. 

Kalipeni, 48:30 

Grace, what about you? What do you think it will take to make the economic recovery equitable? And what do you want the economy to look like for the next generation of caregivers? 

Kalipeni, 49:03 

Oh, no, we’ve lost your audio again. 

 Diaz, 49:25 

Um, caregiving card, we spend more time with our clients that we are only serve. I would like for the year. Can you hear me now? Nothing. 

Kalipeni, 49:50 

Yes, we can hear you now. Maybe try turning off your video and see if that helps. 

Diaz, 49:55 

 Can you hear me? It’s okay. Now? Yeah. Yeah. Again, our caregiving job needs a lot of attention, time, patience, and a bit hard. We spend more time with our clients than with our own family. In order to gain the respect and dignity we deserve. I would like for the future or new, we’re still have the peace of mind in terms of job security, that we would be able to take care of our health. And we’ll be able to take time of doubt or dream about not being in pain pathway to a pathway to citizenship to under documented, essential to work approach. And also Lastly, I would like to see the future caregiver have retirement pay and the means to age and die with the dignity like that. 

Kalipeni, 51:50 

Okay, I  think we lost you a little bit at the end, but we caught most of what you said, Grace. Um, so we have a question from the audience.  About that, from one of the audience members that said, You know, I cared for my 96-year-old mother with the help of hospice, which again, people should do a little bit of research to see what your options are in accessing hospice and why you need to be part of this advocacy community. My sister’s caring for her grandchildren. And the gap of this generational care is widening which we completely agree. What can the federal government create specific dollars and more resources to ensure we can care for our loved ones? Nicole, what are your thoughts on this? And then I definitely have some thoughts on this.  

Jorwic, 52:51 

Yeah. Thank you for the question, Pamela. I think that that’s exactly luckily what we’re finally seeing a real congressional and administrative will to do. I think that it And it’s we haven’t seen a national or huge investment in-home and community-based services than they were created 40 years ago. And so really, it is because I think that as a service system, you know, they took care of people like you and your, your sister. And just kind of assumed that that was just something that really, frankly, a burden that women were going to bear and whether that’s true, through paid work or not. And so, the fact of the matter is, is that an investment in Medicaid, home and community-based services is exactly what we’re talking about when for that federal government to create specific dollars, because those dollars could be either for a paid caregiver like grace to support your mother or the or the or childcare worker to support those children that your sister’s caring for. But ultimately, also those funds could be used to pay family caregivers who do want to continue to provide that care. So it can be a both and but really, it is that investment in the only game in town, which is Medicaid, and also further modernisations that are going to be needed after this $400 billion investment. But the $12.7 billion from March was unprecedented. So $400 billion, is going to get us a lot closer to this service system that will take care of the general generational care gap that I certainly recognize personally and professionally is growing every day.  

Kalipeni, 54:42 

Yeah, I agree with that. Nicole, I think, you know, the federal government really has to step in here. This is not an issue that can solely be solved within families. All of our families are doing the best we can. And at the end of the day, we’re stretched thin, and it just doesn’t work solely by families. And we know that states can’t do it alone, either the need for resources, the growing demand, the need to really recruit and retain workers, it’s it’s too much for a state to do on its own. And so the federal government really has to step in here, it is both about investing big dollars, this cannot be a small amount, it just a small amount will not be sufficient, it will lead to us as families and states making tough decisions about what they do and don’t do and what they prioritize without a robust enough investment. And the federal government has to set a floor for services, the federal government has to say you have to provide home and community-based services, it can’t be optional. The federal government has to really help in wage setting practices, because we know that the worker that the wages of workers is primarily set by the influence of Medicaid. So the federal government has to really set the floor for that. And we know that there has always been a level of flexibility within Medicaid programs under the federal government, for states to both innovate and experiment with other things and to best serve their populations. But that has to be done on top of a common foundation and floor that sets a shared understanding of quality care and quality services, and quality programs. So I think, you know, the federal government really has to play a role here, I often talk about 2030 as a huge tipping point, and the aging population, as well as new kids being born. And that tipping point in 2030 of the aging population is going to, you know, completely annihilate our care system. And that’s eight, nine years away that’s around the corner. When you think about investments and setting up programs Now is the time that we have to do this now is the time that we have to both invest in care, invest in the workforce, invest in family caregivers, to really be at a place where we are not in any more crisis in 2030. So now’s the time to really do that investment both in a way that sets a common Foundation, but also allows for a level of flexibility for states to do different things as they need. And we can’t forget the need to recruit and retain workers. None of this happens without the workforce. In many places like Hawaii, they have service dollars, and they don’t have workers. And so we have to think about all of this comprehensively. And because all of our experiences aren’t in silos, we have to be the ones holding the line saying actually you’re not going to parse this out. You’re not going to silo this out, as decision-makers as policymakers as members of Congress, all of this belongs in together in one package and one meaningful investment because that’s how our families experience it. So we’re the ones that have to hold the line and make the demands based on our experiences. And the last thing I’ll say about the question that was posed is, we recognize that our experiences make us experts. So we need our personal experiences, to lead the way in identifying the solutions. And in making this real for policymakers who can otherwise default to numbers that don’t have faces and to programs that don’t have faces. So the more we tell our stories, and the more we tell our stories, to people in power, who are decision-makers, the more we can connect the reality of our experiences and in our expertise, because you’ve been a family caregiver, because we’ve all access to various parts of the systems. We know what works and what doesn’t work sheerly based on our experiences. And that makes us experts in this in this moment. Yeah. Go ahead, Nicole, I was gonna 

Jorwic, 59:12 

I was gonna say, and I think that’s such an important point, Josie. And I also think it’s important to note, all you have to be an expert on is your own experience, you don’t have to know the ins and outs of Medicaid, whether you’re a worker or a family caregiver, you just have to know the importance of the work that you’re doing. And that it’s a problem. And that’s all you have to know. And you have to also make sure you’re informing other people outside of this range. That’s it. That’s it, we talked about building a movement. And that’s how we do it a movement of caregivers and care workers and care recipients. And that puts us in the millions in power. And our power can really lead to an increased demand. And we can win the very things that our families and our communities need. So we are at time and to close, I would love to hear from you both about what is giving you hope, in this moment, and drop your organization name a website where people can find you For more information and to get involved. Sure, I think the hope the hope for the moment is the huge momentum and education that came from the threats. And I don’t just mean the pandemic, I mean, the threats against the Medicaid system overall, that lead to people having a greater understanding. And the fact that we’re seeing these huge investments and the continued doubling down on them. And I’m not sure folks know this, but I know the White House knows this, which is the fact that there is no part of the American jobs plan, which is the infrastructure plan that is pulling better than the investment in-home and community-based services. And that’s because everybody is a caregiver. And it’s because people are feeling more comfortable talking about the stresses of that. And I think that that’s why we’re going to be able to win and why we’re going to be able to keep landing on this issue. 

Kalipeni, 1:01:05 

Thanks, Nicole, and where can people find you to get more involved? Oh, yes. 

Jorwic, 1:01:08 

Oh, yes. The arc.org slash action is where you can find out everything that we’re doing our story collection, our action alerts to Congress. And again, really glad to be joining all today. 

Kalipeni, 1:01:20 

Thanks, Nicole. Grace, what gives you hope in this moment, and where can people find you to get more involved? Oh, now your audio is doing that thing again. 

Diaz, 1:01:46 

Um, I think stories. I couldn’t hear me now. We are scared. You need to continually There are stories. Yeah, we need to continually share our stories for everybody to know what’s going on. And also, I’m hopeful that our new administration, President Biden, finally gave us this $4 billion budget for essential workers. So I’m, I’m hopeful that our industry would improve for our future caregivers. Great, thanks. Yeah, I’m the Filipino worker center. We have a Facebook page PwC of Southern California. Thank you so much. 

Kalipeni, 1:02:46 

Thanks, Grace. Thanks, everyone, for joining. My hope is in more conversations like this, where we’re talking about policy and sharing our personal experiences and stories, and you can get more involved by going to carrying across.org or family values@work.org We need everyone. everyone’s voice everyone taking action to really get us to a place where we have a just economy and a care infrastructure that works for everyone. Thanks, every