Calls to expand Long Term Services and Supports (LTSS) are growing in California, and the U.S. In this episode, In Home Support Services (IHSS) recipients, providers, and advocates talk about why expanding LTSS is critical to independent living.
Calls to expand Long Term Services and Supports are growing here in California, in Washington, D.C., and across the country. For people who may be unfamiliar with the term, Long Term Services and Supports, or LTSS, is an umbrella term that encompasses all the supports people with disabilities and older adults need in order to live independently in the community of their choice.
Long Term Services and Supports include home health aides and personal care attendants, but LTSS also include services like medical and non-medical transportation, durable medical equipment, home modifications to make someone’s living space more accessible, and much more.
In President Biden’s Build Back Better agenda that has been stalled in the Senate since last fall, he proposed investing $400 billion in the nation’s LTSS system. Washington State enacted a public LTSS insurance program in 2019, and momentum is growing here in California for universal LTSS for all people who need it in the state, regardless of income or assets.
For more on the calls to expand Long Term Services and Supports, we’re joined by a roundtable of guests from the LTSS4All Grassroots Coalition, a cross-sector campaign for universal LTSS, representing people with disabilities, older adults, family caregivers and homecare professionals.
Monique Harris and Carrie Madden are with us. Both Monique and Carrie receive In-Home Supportive Services, or IHSS, which is California’s Medicaid-funded homecare program. Monique is a graphic artist based in Emeryville, and Carrie is a (Systems Change Advocate) at Communities Actively Living Independent & Free, or CALIF, the independent living center in downtown Los Angeles.
Allen Galleon is also with us. Allen is a homecare worker, family caregiver for his mother, and an organizer with the Pilipino Workers Center. And we’re joined by Kayla Shore, Southern California Research Manager & Organizer with Hand in Hand, The Domestic Employers Network. And we’re getting support today from Lindsay Imai Hong, the California Director of Hand in Hand, who will be revoicing for Monique.
CARLY PACHECO, HOST: From KVMR and in partnership with FREED, this is Disability Rap.
MONIQUE HARRIS: I think I would be in a care home and not achieving what I want to do in life.
LINDSAY IMAI HONG: (repeating Monique): I think I would be in a care home and not achieving what I want to do in life.
PACHECO: Today, calls to expand Long Term Services and Supports here in California and across the country.
CARRIE MADDEN: It’s all about independence. It’s given me the freedom so that I can work. I don’t have to worry about being absolutely exhausted and worried that things in my house are going to fall apart.
KAYLA SHORE: I think our big vision as a coalition is very simple. It’s about creating a long-term services and support system that actually works for everybody
PACHECO: That’s all coming up right here on Disability Rap. Stay tuned!
CARL SIGMOND, HOST: Welcome to Disability Rap, I’m Carl Sigmond with Carly Pacheco.
PACHECO: Calls to expand long-term services and supports are growing here in California in Washington D.C. and across the country. For people who may be unfamiliar with the term, long-term services and supports or LTSS is an umbrella term that encompasses all the supports people with disabilities and older adults need in order to live independently in the community of their choice.
Long-term services and supports include home health aides and personal care attendants, but also LTSS includes things like medical and non-medical transportation, durable medical equipment, home modifications to make someone’s living space more accessible, and much more.
In president Biden’s Build Back Better agenda that has been stalled in the senate since last fall, he proposed investing 400 billion in the nation’s LTSS system. Washington state enacted a public LTSS insurance program in 2019, and momentum is growing here in California for universal LTSS for all people who need it in the state, regardless of income or assets.
For more on the calls to expand long-term services and supports we’re joined by a roundtable of guests from the LTSS4All Grassroots Coalition. They’re a cross-sector campaign for universal LTSS representing people with disabilities, older adults, family caregivers, and home care professionals.
Monique Harris and Carrie Madden are with us. Both Monique and Carrie receive in-home supportive services, or IHSS, which is California’s Medicaid-funded home care program. Monique is a graphic artist based in Emeryville, and Carrie is a Systems Change Advocate at Communities Actively Living Independent and Free, or CALIF, the independent living center in downtown Los Angeles.
Allen Galleon is also with us. Allen is a home care worker, family caregiver for his mother, and an organizer with the Filipino Workers Center. And we’re joined by Kayla shore, Southern California Research Manager and organizer with Hand in Hand, the Domestic Employers Network, and we’re getting support today from Lindsay Imai Hong, the California director of Hand in Hand, who will be re-voicing for Monique.
SIGMOND: We welcome you all to Disability Rap. Monique and Carrie, we wanted to begin with you. Could each of you just tell us what LTSS means to you? How does it support your independent living? Just give us a picture of LTSS in your lives. And Monique, let us begin with you.
HARRIS: I live in my own house with my son, Brandon.
IMAI HONG (repeating Harris): I live in my own house with my son, Brandon.
HARRIS: I go to work every day, so the attendants get me ready in the morning.
IMAI HONG (repeating Harris): I go to work every day, so the attendants get me ready in the morning.
HARRIS: They get me dressed, get me in my chair and out the door.
IMAI HONG (repeating Harris): They get me dressed, get me in my chair and out the door.
HARRIS: So without them, it would be impossible for me to live my life.
IMAI HONG (repeating Harris): So without them, it would be impossible to live my life.
HARRIS: I’m a very independent person, and they help me to be independent.
IMAI HONG (repeating Harris): I’m a very independent person, and they help me to be independent.
HARRIS: I’ve been working with attendants since I was fifteen years old, and I’m 57 now.
IMAI HONG (repeating Harris): I’ve been working with attendants since I was fifteen years old, and I’m 57 now.
HARRIS: That’s a long time dealing with attendants.
IMAI HONG (repeating Harris): That’s a long time dealing with attendants.
HARRIS: I had some very good attendants, and I had some bad attendants.
IMAI HONG (repeating Harris): I had some very good attendants, and I had some bad attendants.
SIGMOND: I’m just wondering, if you did not have the support of these attendants, where would you be? What would your life be like?
HARRIS: I think I would be in a care home and not achieving what I want to do in life.
IMAI HONG (repeating Harris): I think I would be in a care home and not achieving what I want to do in life.
HARRIS: I do stuff. I raised a son. I got my own business. I go in and out of the house as I want. And I have support.
IMAI HONG (repeating Harris): I do stuff. I raised a son. I got my own business. I go in and out of the house as I want. And I have support.
SIGMOND: Thank you, Monique. And Carrie, I have the same question for you. What does LTSS mean in your life?
MADDEN: LTSS means independence for me. I started receiving services about 30 years ago, actually kind of when I started going to college. I realized quite quickly living in a dorm I couldn’t do what I needed to do. All my clothes were piling up. I didn’t have the energy, the strength, the endurance to take care of the laundry, cook the food – you know – all the stuff that you need to do for somebody living on their own for their very first time. And fortunate for me, at the dorms, they told me about IHSS, in home supported services, and they said, “I think you need it, Carrie.” And I said. “Yeah, I do need it!”
So I arranged for my first workers, and from that point on, I’ve had helpers for about 30 years. First with the laundry, then with the cooking, then with the shopping, errands, transportation to appointments. All these things, I’ve been able to benefit from because of the programs. Without those programs, especially with my type of disability… I’m a person who uses a power wheelchair…
But my disability is progressive. It’s very slowly progressive. So, early on when I was in college, I could still walk a little bit but mostly used my power wheelchair. But nowadays, I cannot. So, now I’m really dependent on my IHSS providers to hand me things, to take care of a lot of the details people have when they’re living independently.
It’s all about independence. It’s giving me the freedom so that I can work. I don’t have to worry about being absolutely exhausted and worried that things in my house are going to fall apart. It’s a lot of peace of mind, really. I know that my future is secure because I have the staff and the people around me who care about me. And they’re all in it and help me achieve my goals. So, it’s a wonderful program.
PACHECO: Thanks so much to both of you for sharing what LTSS means to you and how critical it is to your independence. Switching a little bit towards how activists are working to expand LTSS and to ensure that everyone who needs it has access, Kayla, could you just briefly describe what the LTSS4All Grassroots Coalition is? Who are your members? What are you calling for? Give us an overview of what you all do.
SHORE: The LTSS4All Grassroots Coalition is a grassroots base building group made up of organizations, and we represent people with disabilities and chronic illnesses, family caregivers – past present and future – older adults, and allies – people who see themselves… Maybe they don’t yet need long-term services and supports, but they know in the future they and their family are going to need and provide care at some point.
We convene groups from all across the state, including groups like my organization, Hand In Hand, which organizes specifically people who employ home care workers and domestic workers, as well as groups like the California Alliance of Retired Americans that brings in a lot of older adults into the coalition, worker centers and groups – like the Filipino Worker Center, which I’m sure Allen will speak to a little bit more later – and many other really powerful coalitions that are all about bringing in the people who are on the front lines, experiencing this on the ground, not just at the policy level, but at the grassroots, who feel the urgency of finding more funding and support and infrastructure for this long-term care system, for the long-term services and support system that we all need now, or will need in the future.
I think our big vision as a coalition is very simple. it’s about creating a long-term services and support system that actually works for everybody. That ensures that the workers who are providing the support get the fair pay and wages and benefits they need. That they can expect to receive care and support in the future when they need it. That people with disabilities, older adults, and anyone who needs the support can count on reliable, quality support that allows them to stay at home and in community, and be contributing and being connected and out to the world however they want to, and the way that Carrie and Monique just talked about with their stories. And that family caregivers also get the resources and support that they need to continue to provide support and to people and their families and get support when they themselves need it.
And to make that vision happen, we are working right now on two really exciting campaigns. One is the Time for 20 campaign, which we’re doing in partnership with SEIU 2015, the union that represents home care workers and nursing home workers. And that’s all about raising the wages of IHSS workers to twenty dollars, starting with Alameda County, where the East Bay is, and L.A. County. And really recognizing that raising wages is one of the key elements in making sure that workers have the money to take home to their families to be able to survive, and live, and thrive, hopefully. That they can stay in the work, as they find it meaningful, right? They can stay and keep doing these jobs, and continue working with people for many years.
And then, of course, on the side of the home care consumers and employers, making sure that they have access to that reliable workforce pool, and can stay living happily and comfortably at home and in community. So that’s the first campaign, and I can share more ways later about how listeners can get involved and make this happen, because this really can only happen with the support of workers, consumers, and allies – everyone who has a stake in this, which I think is all of us.
And then, I’ll just speak briefly to the second campaign, which is the focus on creating a long-term services and supports benefit for all of California. And right now, there’s some legislation happening at the state level. It’s just been introduced. I’ll get you the bill number in a second, but it is all about laying the groundwork for a benefit that would be a social insurance program – kind of like unemployment benefits – where people in the workforce are able to pay into the benefit, and then whenever an LTSS need arises, whether that’s – you know – you’re getting support already from another government program, and you need additional hours, that you can call on this funding to fill in the gap. Or if you suddenly find yourself needing more support. Maybe there’s a medical change in your life, or a fall. These are ways to really bridge the gap and make sure that families who might otherwise spend down all their savings paying for home care, which can be really expensive, that there is a safety net for that. And the bill number is AB2394.
So we’re really excited about that as something that, again, listeners, people on the ground, were part of this effort to show how essential funding and investment – public investment – in LTSS will be.
SIGMOND: Thank you, Kayla. Allen, I want to bring you in here. Can you tell us a bit about the Filipino Workers Center, a bit about your own story, and then talk a bit about the connection between consumers and home care providers, and where their needs intersect?
ALLEN GALLEON: Today, I represent the voices of the active participants in this industry, the home care workers, also known as the caregivers, ones who actually actively provide you support in your own homes. We are the ones who are the active bodies that come when you need somebody there to help you, and yes, alongside this busy life that we live helping people with disabilities, we make sure that as workers, we have a position to make sure that our worker benefits are also heard.
And that is why I myself have participated in a worker center in my city. That’s the Filipino Worker Center. In order to be able to participate in campaigns, and raising our voices, and also contributing through narrative storytelling, and doing phone bankings, doing visitation to our legislations. Also doing lobby visits.
And also most importantly nowadays, we are actually actively using social media, and making sure that everyone, all our voices, are heard by authorities, especially nowadays. We have campaigns under the umbrella of long-term services and supports that we all need to share efforts with, so that our employers, our – you know – individuals with disabilities, and also workers, are benefiting from something that would make our lives better.
SIGMOND: And what would it mean, Allen, for your industry to get more support? What would that look like for you and your colleagues?
GALLEON: The only thing that we are not doing in order for our voices to be heard is quit. We want to be part of the solution. That’s why many of us, especially at Filipino Workers Center, provide our bodies, our attention to campaigns that we are invited to participate in, so that somebody’s there to provide stories, narratives, and so that it continues – you know the effort that we’re doing. Obviously, we are not able to do this alone.
In order for us to be receiving a higher compensation in this industry – you know – there will be trainings. Yes we will appreciate. There will be funding for retraining our home care workers, in order to be in the level of – you know – a higher compensation. Again, we cannot do this alone.
We will make sure that symbiotically, our relationship with our employers are pretty much in order. So, the only way to show that is to make sure that our job is being done properly, in order for our clients, and the people that we take care of would live with decency, we’d live with proper health care from the people that comes into your homes like us.
SIGMOND: Monique, I see that you are wanting to add something here.
HARRIS: I think we need to think about how to get more workers in this industry –
IMAI HONG (repeating Harris): I think we need to think about how to get more workers in this industry –
HARRIS: – and get people to think about their own lives.
IMAI HONG (repeating Harris): – and get people to think about their own lives.
HARRIS: And, when they get older, they’re gonna need support.
IMAI HONG (repeating Harris): And, when they get older, they’re gonna need support.
HARRIS: And you want attendants to be able to get enough money to take care of theirselves,
IMAI HONG (repeating Harris): And you want attendants to be able to get enough money to take care of theirselves,
HARRIS: ‘Cuz if they can take care of theirselves, they can take care of us better.
IMAI HONG (repeating Harris): ‘Cuz if they can take care of theirselves, they can take care of us better.
HARRIS: When I did get hurt –
IMAI HONG (repeating Harris): When I did get hurt –
HARRIS: – when I did break my leg, I mean, I had attendants that were here 24 hours.
IMAI HONG (repeating Harris): – when I did break my leg, I mean, I had attendants that were here 24 hours.
HARRIS: And she didn’t get paid. And that wasn’t right.
IMAI HONG (repeating Harris): And she didn’t get paid. And that wasn’t right.
HARRIS: She spent all that time taking care of me, and she didn’t get money for that.
IMAI HONG (repeating Harris): She spent all that time taking care of me, and she didn’t get money for that
HARRIS: That wasn’t right.
IMAI HONG (repeating Harris): That wasn’t right.
PACHECO: We want to also share with our audience how people can get involved. How can people get involved if they live here in California? But we’ve got listeners outside of the state. So, how could they get involved nationally? If I’m hearing about this conversation for the first time. Maybe I’m a person with a disability who uses LTSS and is worried. Maybe I’m a caregiver. Maybe I’m also just a concerned citizen who can anticipate that I will need – and my family will need – LTSS in the future.
Kayla, I think that was a really good point, right? We always say people will often age into disability if they’re lucky enough to live long enough and we’ll have these similar needs. So, there are universal needs that are shared by everyone. Allen, I see your hand.
GALLEON: Typically, on our busy day, we will not hear many things about these instances on how to participate nationally, but because we are in a community of caregivers, especially my position, we are directly connected to a worker center. And that worker centers are also connected to other community-based organizations. Also coalitions. And they then usher us from the very grassroots level to do things that make sense for all of us.
Again, we’re very busy, but, because we have effective time management, we can still be able to share active participation. Also nowadays we have the virtual capacity to be able to attend meetings, Zoom meetings per se, in order for us to receive all this information from, again, the organization that deals with this in a very collective manner.
So, it is a blessing for us to be in a worker center, such as the Filipino Workers Center, to be connected with Hand in Hand, to be connected with Caring Across Generations, to be connected with National Domestic Worker Alliance, and other entities that are very much in collective [inaudible]. Thank you.
SIGMOND: Thank you, Allen. Carrie, I see that you want to add something here, too.
MADDEN: Like Allen said, there’s a lot of organizations you can join, like Hand in Hand and the Long-Term Services and Supports Grassroots Coalition. Those are great places to start. Also locally, throughout California there are public authorities that meet monthly that you can participate in and have a voice and help us ask for a better pay for our workers, better benefit for our workers. We need so much help at the community level.
I’m on our Public Authority in Los Angeles, and right now, we’re desperately working for – or looking for – more workers. We have a very severe provider shortage. So we’re asking for help to get a hold of, like, our Board of Supervisors and let them know that this can’t go on. We need the help. We need more workers.
So, there’s smaller campaigns going, and there are wider campaigns going. So, if you want to join at the local level, you can join your public authorities. If you want to work a little bit wider, come join us at the LTSS Grassroots Coalition, because that’s statewide. We need your voice all over on this issue. Even if you’re out of state, there are bills right now, like Build Back Better, more funding for Home and Community Based Services. So, at all different levels, there’s work being done. It’s just a matter of finding the people willing to help us out.
SIGMOND: Kayla, we only have a bit over a minute, but I know Hand in Hand is releasing a report very soon, with UCLA. We don’t have time to get into specifics, but where can people go to see the report?
SHORE: Thanks, Carl. Just to add really briefly onto what Carrie and Allen have shared, on the national level, if you want to follow the effort to continue to raise attention and support for the national investment in home care, you can follow the hashtag #CareCantWait. And if you’re in New York State, check out the New York Caring Majority. They are on the verge of winning a 150% increase in wages for home care workers, which is huge and would set an amazing precedent for us all over the country. So check them out.
And then finally, to sign up to learn more, if there are too many different campaigns on your mind, you can go to bit.ly/WeNeedLTSS. And that’s where we can plug you into campaigns in California. We can send you this report that is about to come out, and we can plug you into New York, all over the country.
And in that report, you’ll see some really exciting numbers that back up the campaigns that we’re doing. We found that 85% of consumers want a long-term care benefit; they would be willing to pay taxes to get that benefit, and this is in California. And 76% of consumers want to pay the worker they hire more. And lots of more really powerful information that makes it clear that we all need this change and we need it urgently. The name of the report is Lives and Livelihoods: The Crisis in California’s Home Care Industry.
PACHECO: That was Kayla Shore, Southern California Research Manager & Organizer with Hand in Hand. We were also joined by graphic artist Monique Harris, CALIF Systems Change Advocate Carrie Madden, and homecare worker Allen Galleon. They are all part of the LTSS4All Grassroots Coalition, of which FREED is also a member. The URL for more information that Kayla mentioned is bit.ly/WeNeedLTSS.
And that does it for this show. Disability Rap is produced and edited by Carl Sigmond. Special thanks to Courtney Williams for her support and to Lindsay Imai Hong for revoicing. To listen to this show again, go to FREED.org/disabilityrap or wherever you get your podcasts. I’m Carly Pacheco with Carl Sigmond for another edition of Disability Rap.