What if staying home as you age cost a fraction of what a nursing facility does? In California, a shared room in a skilled nursing facility averages about $130,000 a year. Choice in Aging’s Medi-Cal waiver program works with about $6,000 per person per year to help people remain in their own homes, with the care, connection, and dignity they want.
This week, Kirsten Howe sits down with Debbie Toth, President and CEO of Choice in Aging, a 77-year-old Bay Area nonprofit that helps older adults and people with disabilities live and age in community. Debbie explains how the Multipurpose Senior Services Program pays for support that traditional Medi-Cal won’t, such as transportation, emergency response buttons, and home modifications. She also describes how California Community Transitions helps people move out of skilled nursing and back into the community, and why Choice in Aging is building a $32 million Aging in Place campus with housing and services right outside residents’ front doors. If you’re planning for your own future or caring for an aging parent, this conversation shows what’s possible with the right support. This is Part 1 of a two-part conversation. In Part 2, Debbie shares the story behind Choice in Aging’s intergenerational program.
Time-stamped Show Notes:
0:00 Introduction
0:39 Kirsten introduces Debbie Toth, President and CEO of Choice in Aging, whose programs now reach Contra Costa, Solano, Napa, and Sacramento counties.
2:21 Choice in Aging’s mission: helping people learn, grow, and age in community with dignity, and out of institutions.
2:33 77 years of evolving, from treating children with polio to the independent living movement to serving older adults.
3:51 The 1970s nursing facility exposés that pushed the California State Legislature to look for a better way.
4:33 How adult day health care works: skilled nursing staffing in a setting that looks and feels like a senior center.
5:06 Debbie’s north star: no one should age or become disabled out of the ability to experience joy and community.
5:41 The Multipurpose Senior Services Program (MSSP), and what a Medicaid waiver actually is.
6:08 Who qualifies: adults 60 or older on Medi-Cal who need hands-on help with at least two activities of daily living.
6:34 Complex care management, explained, and why so few people know what it is.
7:07 The biopsychosocial approach: the nurse looks at health, and the social worker asks what brings you joy.
8:02 Caregivers, transportation, training, and in-home hours: building a plan around the whole person.
8:36 What MSSP can pay for, from emergency response buttons to a tablet so Mrs. Smith can attend church on Zoom.
9:35 Why these services fall outside what traditional Medi-Cal pays for, and the paperwork that comes with a waiver.
10:53 The Medicare misconception: Medicare is health insurance, and Medicaid is what pays for long-term care.
11:27 The cost gap: about $130,000 a year for a shared skilled nursing room, versus $6,000 a year to help someone stay home.
12:08 Why funding still favors institutions over community, and why advocacy matters.
12:36 In more than 2,000 presentations, Debbie has never seen anyone raise a hand for a nursing facility.
13:42 California Community Transitions, California’s version of the federal Money Follows the Person program.
14:24 How the program begins when someone in a skilled nursing facility says yes to exploring community options.
15:01 Housing, care teams, ramps, and grab bars: a transition that can take three months to two years.
16:46 Why words matter, and how ageism and ableism live in our minds until we train ourselves to see them.
17:49 Saving adult day health care, and the realization that Medi-Cal doesn’t cover the true cost of care.
18:25 The SWOT analysis that uncovered nearly two unused acres, and the board’s “let’s just build housing.”
19:08 Accessible, affordable housing for older adults, and the secret sauce Choice in Aging has had since 1980.
19:37 The Aging in Place campus: housing with health, social services, transportation, and nutrition right outside the front door.
20:35 Thousands of funding streams for housing, and none for the services that keep people housed.
21:02 Where the campaign stands: about $17 million raised toward a $32 million goal.
22:14 Why the right donor could close the gap, and how listeners can help.
22:58 Where to find Choice in Aging, and how to join a lunch-and-learn tour of the adult day health care program.
23:58 Coming up in Part 2: a closer look at Choice in Aging’s intergenerational programs.
Get in touch with Debbie!
Debbie Toth, President and CEO
Choice in Aging
dtoth@choiceinaging.org
(925) 682-6330
https://choiceinaging.org/
Transcript:
Hello, and welcome to Absolute Trust Talk. I’m Kirsten Howe, host of Absolute Trust Talk and managing attorney at Absolute Trust Counsel. I’m really excited, and a little surprised at myself, to have my guest today. Surprised because I should have had her on a long, long time ago. My guest today is Debbie Toth, President and CEO of Choice in Aging. Debbie joined the Choice in Aging team in 2002 and worked her way through various positions until she became president and CEO, and she’s on the board of directors.
Choice in Aging runs a variety of programs from a couple of different locations, one in Pleasant Hill and one in Antioch. In addition to running all of those programs and being the chief in charge of everything over there, Debbie advocates for seniors’ rights at the federal, state, and local levels. Under her leadership, Choice in Aging has expanded to include a wide variety of senior programs, not just in Contra Costa County, but in Solano, Napa, and even Sacramento County.
In 2017, Debbie realized one of her big dreams by adding an intergenerational program to Choice in Aging, and we’re going to focus on that in a follow-up to this episode. We’re going to spend a couple of episodes with Debbie, and I’m so delighted to have her here. You’re going to hear it, and if you’re watching on video, you’re going to see it: she really is a tireless advocate for seniors, for persons with disabilities, and for the underserved.
Debbie, thank you so much for being here. I’m really honored, and I feel like I owe you an apology for not inviting you years ago.
You owe me no apologies. Thank you for having me. I’m really excited to be here.
I am too, because what your organization is doing is so important in our community. Let’s start by talking about Choice in Aging. Describe what it is and what its mission is.
Yes. We want to support people learning, growing, and aging in community with dignity. Everything we do is geared toward people not being institutionalized, and that has been our agency’s history. It’s a 77-year-old organization, and we have been through a lot, from treating children with polio to supporting people with developmental disabilities to being part of the independent living movement. But in the ’80s, we really shifted our focus to the older adult population. People who need support to live in community often get institutionalized, and at Choice in Aging, I think we’ve come up with a magical recipe to keep them out.
And Choice in Aging is a nonprofit.
Yes.
You said it’s 77 years old, but it only began focusing on the elderly at some point along the way. Was there a name change?
Oh, there have been many names along the way. It was Children’s Rehab. It was Rehabilitation Services of Northern California. When we finally changed the name from Rehabilitation Services of Northern California to Choice in Aging, I thought, okay, if I die tomorrow, it’s okay. I finally got the name changed. We would call people, the caller ID would come up “Rehabilitation,” and people would think a rehab was calling.
Right.
It just wasn’t accurate. And this is the beauty of Choice in Aging: we’ve evolved to meet what the community needs, and we have the capacity to provide it. In the late ’70s, we started seeing skilled nursing facilities exposed on CBS, ABC, and NBC, back when we had three news stations. There were horrible things happening in skilled nursing facilities, much like during the pandemic, when we saw those headlines about bodies being found three days later. We were seeing that in skilled nursing facilities in the ’70s, and the California State Legislature said there has got to be a better way.
So they created adult day health care. They took the Welfare and Institutions Code for a skilled nursing facility, with that same staffing, and applied it in a daytime context. It looks and feels like a senior center, but these are folks who can’t necessarily go to the restroom alone, or who need support with walking, eating, or engaging in activities. They have the full complement of medical staffing there, but it looks and feels like a senior center. Choice in Aging launched the 16th licensed adult day health care facility in the state of California, and that was in 1980.
Since then, we’ve really grown our muscles around how we serve older adults and disabled adults and keep them living independent of institutions, because that’s our primary north star. But we also feel you should not age or become disabled out of the ability to experience joy and community, and so we create that.
Well, let’s talk about some of the programs you’ve developed over the years. I’ll throw one out: the Multipurpose Senior Services Program. What comes under that?
That is what’s called a federal waiver.
What is that?
A federal waiver is part of Medicaid. At the federal level, it’s called Medicaid; in California, we call it Medi-Cal. It’s the low-income insurance program. A Medicaid waiver waives the traditional rules around what Medicaid can spend money on. A waiver serves a specialty population, and in this case, it’s people who are at a skilled nursing level of care.
What does that mean? It means they need active, hands-on assistance with at least two activities of daily living. They need help walking, showering, or eating, so they must have a significant need for support. Once they meet that skilled nursing level of care requirement and they’re on Medi-Cal, we can provide services to them. They also have to be 60 or older.
It’s a nurse and social worker team, and that team does what’s called complex case management. What is that? Nobody knows, because we don’t have a long-term care system, so let me break it down. Case management, or care management, looks at how this person navigates the systems they need to access in order to have their needs met. The terms are sometimes used interchangeably. We don’t like to call a person a case, so we call it care management, but historically it’s been case management.
In the case of MSSP, our nurse and social worker go into the home of this person who is 60 or older, on Medicaid, and at a skilled nursing level of care, and they look at everything from a biopsychosocial approach. You’ve got the nurse, who’s looking at all of the conditions and medications they have and whether they’re getting to and from their doctor’s appointments and seeing the specialists they need. And you’ve got the social worker, who’s looking at things like what brings you joy in life. If you’ve attended services every Sunday your whole life, and you fell and broke your hip, and you have three steps to get out of your house, now you’re closed off from your community and your spirituality. How do we bring that to you, or how do we get a ramp so you can get out of your house and get to those things?
We look at the entire human in the ecosystem. Do they have a caregiver? Do they have a way to get to and from their doctor’s appointments? Does their caregiver know what their conditions and needs are, or can we provide more training? Do they need more hours of in-home support than they’re getting, and can we advocate for that? We put together a plan based on that initial assessment, that biopsychosocial look at this human being, and then we enact that plan.
Our social worker is in the home on a quarterly basis, and the nurse is there annually. We make sure we can pay for transportation to and from medical appointments. If they live alone and they’re a fall risk, we can pay for a personal emergency response button, so if they fall, they have a way to summon help. If they’ve had a stroke and have some swallowing issues, we can get them a thickener for their food so they’re not aspirating and choking on what they swallow. We can connect with their pastor and say, “Mrs. Smith is no longer able to attend services since she fell and broke her hip. Is there a way we can get church members to come to her home?” Or we can buy her a tablet and connect it to Zoom so she can participate that way. That program really looks at all the potential barriers to somebody living independently, and how we fix them.
The things you’re talking about are way beyond what Medicaid covers.
Right. Medicaid will pay for doctor’s visits and a social worker, but it won’t pay for all that connecting. It won’t pay for oral nutritional supplements. It won’t pay for durable medical equipment more than once every five years. So there’s this pocket of money we’re allowed to spend on this individual that Medicaid typically wouldn’t pay for. That’s why it’s called a waiver, and that’s why we add 5,322 pieces of paper to track it.
Well, it is a government program.
Yes, yes, yes. The waiver programs are particularly paperwork-intensive.
Oh, yes. They’re probably very picky, combing through everything to make sure what you’re doing is legitimate. But that’s so extraordinarily helpful, because what Medicaid traditionally pays for doesn’t really help people live their lives. It’s a great program, but there’s so much more to a life than what it will pay for.
Yes, and this is what’s called long-term supports and services. Medicaid pays for long-term supports and services; Medicare does not. People have the misconception that Medicare is going to pay for everything as they age. No, that’s the health insurance part of it. Medicaid pays for the long-term care part of it, but Medicaid doesn’t historically pay for all those other things I mentioned. This program ensures that people don’t end up in skilled nursing facilities that Medicaid would otherwise pay to have them in.
And what’s really interesting for taxpayers who are looking at government efficiency: right now in the state of California, on average, it costs about $130,000 a year to have somebody living in a shared room in a skilled nursing facility. We get paid $6,000 per person per year to keep them out.
Oh my gosh. Oh my gosh.
Yes.
You can do all of those things that enable someone to live in their own home, which is where we all want to live, and you’re saving over $120,000 per person every year.
Yes. And yet we bias our funding toward institutions instead of community, which is nuts. That’s why we have to do all that advocacy.
Right. And that’s also why we have to get the word out that there is this alternative. People would much rather do what you’re doing than end up in a skilled nursing facility, if it’s possible.
AARP studies that every year, and by far the vast majority of people want to be able to age in place. You mentioned I started at Choice in Aging in 2002. Let’s just say, conservatively, I’ve done more than 2,000 presentations in my time, and that’s very conservative. Often, I start by asking the audience, “Which one of you, when you were young, thought, ‘Gosh, when I get old, I want to live in a skilled nursing facility’?” I have yet to see a single person raise their hand. So why are we biasing a system that forces people to spend everything they have and either end up homeless or end up in an institution? It’s not what any of us want.
Right. And economically, it makes no sense.
Amen.
Tell us about one or two of your other programs, aside from the ones I want to focus on.
I’m going to share a story with you about our California Community Transitions program. In California, we rebrand everything. Medicaid is Medi-Cal, and the federal program Money Follows the Person is California Community Transitions here.
You always have to be different.
We are California, right? That program was a federal pilot project to study whether it costs less money to move people out of skilled nursing facilities than to have them there.
Anecdotally, we know the answer is yes. It’s quite obvious.
Yes, but the federal government wanted to study it. They launched it in 2008, and we began providing the program in 2009. At that time, somebody had to be living in a skilled nursing facility for six months or longer on the Medicaid dollar before we could engage with them. The skilled nursing facilities are supposed to ask residents on a quarterly basis whether they want to look at community options, and they don’t. But if a resident says yes to that question, the skilled nursing facility has to contact Choice in Aging.
Then we look at how to get this person out of the skilled nursing facility. We have to find housing. We have to find a care team, and I’m talking about in-home care as well as community physicians and specialists. Are they going to be safe? Can we safely transition them out? Can they get the services they need to thrive in the community? Then we have to enact that plan and get them out. In cases where they don’t have a family member and a home they can move into, we go on wait lists for low-income housing. We have to outfit that house. We have to retrofit it with ramps and grab bars. It’s a big process. It can take anywhere from three months to, in one gentleman’s case, two years, but we got him out. How much more mission-meeting can you get? We’re trying to prevent people from going in, but when we can get them out afterward, it’s such a beautiful thing.
I’m going to share a little life lesson, because we should never stop learning, and I continue to learn every day. I was hosting a Master Plan for Aging event in Contra Costa, with the whole room broken up into different topics. I had talked about our California Community Transitions program, lovingly calling it our “jailbreak program,” because from my perspective, a skilled nursing facility is like a jail. You don’t choose your food. You don’t choose when you eat. You don’t choose when somebody comes to help you to the restroom. There is no choice there.
The executive director of the ombudsman agency at that time raised her hand and said, “Debbie, you do realize some people have to live in skilled nursing facilities, and you just called their home a jail.” And I thought, okay, I guess I can’t call it the jailbreak program anymore. Part of being a quality nonprofit organization that serves people is recognizing that words matter, and that how we structure our statements and how we talk to people matters, because ageism and ableism are so embedded in everything that they live in our minds. We have to train ourselves to see those things and call them out. I greatly appreciated her calling me out, and I had a moment where I learned something.
Well, as you say, we all need to keep learning.
Yes, that’s great.
I understand you’re in the process of expanding your campus.
Yes. After adult day health care was eliminated at the state level, the state was sued, and we were able to retain the program. Then we had this moment where we realized we were all underpaid. Medi-Cal does not pay what it costs to provide the services, but the regulations and the medical staffing are very expensive. We were never going to thrive. We were just going to barely survive if we didn’t do something differently.
So our board and our staff, at every level from our direct care workforce up to our board and everyone in between, did a SWOT analysis. We looked at our strengths, our weaknesses, our opportunities, and our threats. At that time, our mission was to promote dignity and independence for people with disabilities and special needs, and our board asked, “How are we guaranteeing independence if we can’t guarantee people have a roof over their heads?” In that SWOT analysis, we learned we were sitting on four acres of land and not using almost half of it. So the board said, “Let’s just build housing.”
Let’s just build housing.
My board loves to do the “let’s just.”
And you go do it.
I go do it. At first I laugh, and then I do it. It’s a lot, but they were right. We have a major housing crisis. We don’t have accessible housing. We don’t have affordable housing. We don’t have housing geared toward older adults. And we have the secret sauce. Since 1980, we have been keeping people out of skilled nursing facilities with the support they need, and with joy.
So why wouldn’t we create a model that could disrupt our current de facto long-term care system, which is an institutionally biased poverty pipeline? What if we had housing with all the right wraparound services right outside somebody’s front door? We’re going to prove that people don’t need skilled nursing facilities. Rather than investing in building skilled nursing facilities, we can change policy and budgeting to favor building aging-in-place campuses, where people can live in independent housing with health and social services, transportation, nutrition, and everything else right outside their front door, and never need to go into that $130,000-a-year shared room.
That’s fantastic. What’s the current status?
That’s a great question. I always say there are 3,572 different funding streams to build housing. That number isn’t accurate, so don’t write it down. It’s just my hyperbolic way of explaining how many funding streams there are for housing, compared to how many there are for building the services that allow people to remain living in that housing: none.
The housing side is being built by Satellite Affordable Housing Associates, and they’re waiting to hear on their last bit of funding to close the gap so the entire housing portion is funded. They didn’t do a capital campaign; they wrote grants. But our portion includes the intergenerational preschool, the adult day health care program, our administrative offices, our case managers, and our transition coordinators. They all have to be somewhere, and for our portion, there are no funding streams. So we’ve been raising individual dollars, city dollars, regional dollars, state dollars, federal dollars, and foundation funding. We’ve had to launch this campaign, and we’re at about $17 million raised. We have to raise another $15 or $16 million. When we started the project, the goal was $19 million. Now it’s $32 million. Everything has gone up radically in cost.
It’s very expensive. But there was a study done in 2017 of all the families in the United States with a net worth of $50 million or more. There were 37,000 such families in 2017, and 50% of them live in the Bay Area. There are people who could write me a check for the balance of what we have to raise, and it would feel to them like me buying a box of Kleenex. I just need to get in front of the right person. So if you’re listening and you’re one of those people, or you’re friends with one of those people…
This is a good segue, and a way for us to end this episode. Tell us how people can help you.
Our website is choiceinaging.org, all one word, and we have a whole section on the Aging in Place campus. You can reach out to me at any time; I’m happy to meet with you. We do lunch-and-learns where people come in and tour the adult day health care program. They get to see the intergenerational activities and our multicultural programs. Then we sit down and have a conversation about the broken long-term care system, our vision for the Aging in Place campus, and how we’re studying those outcomes. We’re going to partner with a university, because the proof is in the pudding. So come out for a tour, call me, or email me. We’re very interested in partnering with like-minded individuals. Anybody who has cared for somebody with Alzheimer’s disease knows you cannot do it alone. You have to have partners, and we are those partners. Just go to our website, check us out, and call or email me.
Thank you so much, Debbie. We’re going to end this episode, but as I said at the beginning, we’re going to do a follow-up episode where we focus on a couple of the really cool programs Debbie has going at Choice in Aging. Thank you again so much, Debbie.
Thank you for having me.
My guest today has been Debbie Toth with Choice in Aging. Thank you for listening, and for watching, if that’s what you’ve been doing. I look forward to connecting with you next time.
Resources Related to This Episode:
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- We’re pleased to provide a library of e-books to address common estate planning questions and concerns in practical, easy-to-understand language. https://AbsoluteTrustCounsel.com/Resources/.
- ASK KIRSTEN: If you’d like Kirsten to answer your question on the air, please email her at Info@AbsoluteTrustCounsel.com.
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