S2E6: Why Aren't More People Using Consumer Direction?

Too few people know about consumer direction, a policy allowing Medicaid recipients to hire and pay family members for in-home care. This growing workforce of consumer-directed beneficiaries ("independent providers") is expanding, but not quickly enough to meet rising demand.

In this episode, Host Robert Espinoza speaks with Corinne Eldridge, President and CEO of the Center for Caregiver Advancement. They discuss what consumer direction offers, why independent providers need more government attention, and how to boost this aspect of long-term care.

Robert Espinoza: What would happen to families everywhere if more than 5 million direct care and childcare workers in this country were to vanish overnight? Welcome to Season 2 of A Question of Care, a podcast that explores this question through different viewpoints and topics. I'm your host, Robert Espinoza, a national expert and frequent speaker on aging, long-term care, and the workforce. In this episode, we'll look at the vast care network of independent providers with the leading expert in the space, Corinne Eldridge.

Corinne Eldridge: My name is Corinne Eldridge, I lead the Center for Caregiver Advancement in California. I've been working with long-term care workers for, gosh, almost 20 years now. When I first joined the industry, I actually worked for the labor union that represents home care workers and nursing home workers. And, for the past 11 years, I've been leading the Center for Caregiver Advancement.

Robert Espinoza: And what is the Center for Caregiver Advancement?

Corinne Eldridge: We are a nonprofit organization that is really focused on building up the value of quality training programs for both home care workers and nursing home workers, and really training the workforce, highly trained caregivers that many Californians can't live without.

Robert Espinoza: What I love about this conversation is that it's drawing attention to consumer direction programs, which not many people know about, or not enough people know about, I should say. Many consumer direction programs around the country allow recipients to choose family members, even spouses, in some states, to be paid in-home caregivers. And in workforce terms, those paid family members, they're often referred to as independent providers. What is the process for becoming an independent provider in California?

Corinne Eldridge: California is a big proponent of home and community-based services, and so really honors the consumer-directed model of care in allowing for independent providers, and consumers are able to choose the caregiver who takes care of them. And so, what that means is they're able to look within their community, look within their family, and find somebody who they have a relationship with, who then could take care of them. They may not be able to find a family member, which is increasingly the case, and so even if it is a family member, though, they do have the right to both hire, fire, and train that individual. So, that way, they ensure that their rights, their needs, and their desire are really present in the consumer-directed model of care.

Robert Espinoza: You noted that it's not always the case that people have family members to support them, I'm wondering if you can share just a little bit more about that. I think, oftentimes, people make the assumption that your family is going to be there when you need that type of long-term support, and that isn't always the case. What are you seeing among your workforce?

Corinne Eldridge: Yeah. There's a changing in demographic that is not unique to California, it is really about what people are choosing to do in their lives in terms of having less children or having children later in life. And so, there's a smaller amount of available family members to care for seniors or individuals with disabilities, then there's also a need for folks who might be a caregiver to make more money and to be able to provide for their family in different ways.

And so, the availability of family members has decreased quite dramatically. I think ARP did a great study on this several years ago where it used to be, I think, one in 20, and over the next few years, it's going down to one in four. My stats might be off a little bit, but it's pretty dramatic the decrease in available family caregivers.

Robert Espinoza: It is a dramatic difference. And in season 1 of A Question of Care, we spoke with Michael Adams at SAGE who talked about LGBTQ+ older adults who are often single, they don't have children, and they rely on friends as support if they have those friendship networks. I want to talk a little bit about California's In-home Supportive Services Program, or IHSS.

Many of the caregivers that your organization trains and supports are part of this program. Can you describe for our listeners what this program does?

Corinne Eldridge: Sure. This program allows consumers to get assessed by a social worker, and once that assessment is completed, there's hours associated for what their needs are, for access and functional needs in terms of activities of daily living; things like dressing, toileting, eating and instrumental activities of daily living. Things like preparing meals, stuff that's really necessary for an individual's survival. And these activities, as you might hear me talking about, are things that allow an individual to stay in their home.

And so, folks who are low-income seniors, or people with disabilities who meet the low-income threshold and meet these access and functional needs assessments are then eligible for services. And, in California, there's over 600,000 consumers and a little over half a million workers that care for this population, with about 10% are under 18. So, individuals under 18 years of age who have a disability of sorts, about 35% who make up that 18 to 64 population, and the rest are the 65-plus population.

Robert Espinoza: Corinne, what are the key principles of consumer direction programs in home care, and how are they different from traditional home care models?

Corinne Eldridge: A consumer-directed program ensures that the voice, the deeds, and the desires of the consumer are honored and are centered in the values of the program and how they get care from an individual. So, the fact, as we talked about earlier, that they have the right to hire an individual, and make sure that they have a level of comfort with that person who's coming into their home, it's a very intimate setting. The work is difficult, but also you have to be close to an individual in order to ensure that they're getting the care and allowing for care to be given.

And I think it's really critical to note the difference if you describe between that and, let's say, a private agency model, where there's a traditional employer and the consumer, the person who needs a caregiver is associated then with the agency itself, and that's where the hiring happens. And so, it's a little more distanced and more arms length away than if you're working with an independent provider, and having that choice.

Robert Espinoza: Something that's less known, I think, about consumer direction programs are what tremendous impact they're having on the people there are a part of it and they're supporting. Can you provide examples of how consumer direction programs have improved the overall experience and the outcomes for people receiving home care services?

Corinne Eldridge: Absolutely, and I think I said it before in the previous answer, but there's really a level of advocacy that happens so that an individual who's receiving that care can really ensure that their voice and their needs are present through part of their process. I think it starts at the beginning when there's an ability to find that person, and there's also a part of communication with the provider that really is essential to ensuring that they're working together as a team to ensure that rights, needs, desires are met.

Robert Espinoza: Corinne, in your experience, what motivates someone to become an independent provider?

Corinne Eldridge: Love. You cannot do this job if you don't have love. Some people are natural caregivers in that they want to help out, and I think that that is where this job has come from by the need of filling a need where you see that you have a loved one who needs care, they need support. They may have some sort of chronic condition, and you want to keep them out of an institution and ensure that they have the best care possible.

Robert Espinoza: And I imagine that, in order to deliver the best care possible, what's needed is really strong training and support. What are the training and support needs of independent providers?

Corinne Eldridge: Well, quite large and varied. The consumer population is not monolithic, it is quite nuanced. If you think about what is needed to support individuals with a wide variety of chronic conditions, a wide variety of access and functional needs, there's specializations and generalizations that can be used to train this workforce. We do a lot of different training programs at the Center for Caregiver Advancement.

We think there's some related to essential skills on, like I mentioned earlier, the instrumental activities of daily living, on activities of daily living, and then there's a deeper training that is related to an individual's chronic conditions like Alzheimer's disease or even emergency preparedness with climate change and the emergencies that happen with that, individuals who are IHSS consumers are in really vulnerable positions. And so,we have to position those independent providers to be successful, not just for themselves, but so that way, the consumer they care for is safe in all of these different circumstances. Be it emergency or just day-to-day in managing their condition.

Robert Espinoza: Listening to all that does illustrate how much work and skill it takes to deliver good care in this country. I imagine you also get questions about the advantages of being an independent provider compared to a traditional home care agency. What are some of the unique advantages of being an independent provider, and what are the disadvantages compared to the traditional home care agency model?

Corinne Eldridge: Being an independent provider allows for a level of choice on the worker perspective and the consumer perspective. I think there's a lot more flexibility in terms of that relationship, how they are able to work collectively for what those set of hours are between the two, ensuring that the care and the needs of the consumer are met. And typically, they're in the same community as that individual consumer. Again, be it a family member, they may live in the same household, sometimes they don't live in the same household.

And if they're not a family member, typically, they live close to them, so it's not a big commute, and there's a familiarity with the neighborhood. And then, the other side of the question, compared to a traditional home care agency, there's layers of management, and depending on who you are, that may or may not work for you. I think some people do like the IP, as we call it, the Independent provider model, because they have that direct relationship with the consumer, and so they're able to coordinate a variety of different pieces. The flip side of that on if you were to be with a private agency, if you are a worker and there are issues that arise with the consumer, there can be a level of support that you get from the employer that may be different if you are an IP provider and working with that consumer on your own.

Robert Espinoza: In this season of A Question of Care, we're asking all of our guests to imagine what our society would look like if there were no care workers. And I'm curious, as it relates to the work that you're doing, how do you think society would change if there were no consumer direction programs or independent providers?

Corinne Eldridge: I go to a very dystopian perspective in my head to visualize it as full of institutions and people living in places that are not meeting their needs. And I don't mean just healthcare needs, emotional needs, friendship needs, food needs, cultural needs, everything about, I think, being a functioning human where you have choice as much as possible. If the IP model were to go away, I think that would really alter where choices and how people are able to age in place.

Robert Espinoza: It is a grim picture, especially in a system that is already under-resourced and lacks the kind of workforce support that older adults and people with disabilities deserve. I want to shift to interventions and solutions. The Center for Caregiver Advancement operates training and support programs for caregivers in the home and in nursing homes. Can you describe some of these offerings?

Corinne Eldridge: Absolutely. This is what we do every day, and we are excited to continue to be able to offer a variety of different training programs to both nursing home workers within facilities and those home care workers in the home. On the skilled nursing side of the work, we do a variety of different courses that are skill-building for incumbent workers. So, language acquisition, ESL, if that is needed, we do certificate programs like moving from a certified nurse assistant to an RFA.

We provide resources for CEUs, continuing education unit classes so CNAs and LBNs can maintain their licensure. And we have a registered apprenticeship program for certified nurse assistants and LBNs too. And we've been really excited to launch that program over the last few years because it's a unique way where employers and union members are able to work together to ensure that some of those positions are filled in a way that supports learning on the job.

The other side of our work is on our in-home supportive services side, and we have developed some really innovative training programs and have evidence-informed curriculum that is centered on the consumer-directed model of care and also really focuses on the workers perspective, ensuring that we build up knowledge for each worker, and we're ensuring that what we say we're going to do in our curriculum actually merits that out in terms of skills and knowledge that they obtain.

We have an essentials IHSS course, and then we built out specific courses related to chronic conditions and disease like Alzheimer's disease and related dementia, which, as we know, in this population, the numbers are only increasing in terms of the disease. Caregiver resiliency teams, which focuses on emergency preparedness skills, especially for climate change emergencies. Autism is a newer one that we developed and launched over the last few years, and it's amazing the number of caregivers who really want to take this class.

So, that way, they have more support for, oftentimes, caring for their children. Traumatic brain injury, diabetes, which is a very common condition in older adults, and then heart disease and care. There's a lot of variety, and really focused on meeting the needs of older adults in these chronic conditions. So, that way, what our students can do with that knowledge is really help consumers with better care that avoids avoidable emergency room visits and avoidable hospitalizations.

Robert Espinoza: It's really remarkable work, and it seems that the best way to bring it to scale and to make sure that consumer-directed models are as strong as possible around the country are to shift how government and how our culture support this. When you think about the policies and cultural shifts that are needed to expand and strengthen consumer direction, what are those policies and cultural shifts?

Corinne Eldridge: Yeah. One of the main changes, I think, is around narrative change on the value of this work, the value of this workforce, the people who are doing this work, and the fact that what they do keeps low-income seniors and people with disabilities out of institutional care. There's also a real need to understand, more deeply, that it's a very nuanced population of consumers, and there's some who are able to self-direct, and others who are not, so further support around that. And knowing that there's a wide variety of consumers, I think it’s really important to understand how the policy work around this and the nuances can change.

And then, lastly, I would talk about it as it relates to attracting and retaining a workforce, not just for the future, but for the now. Crisis of care, we all talk about it, but how do we get it beyond our echo chamber. And so, having it really be a multi-pronged approach, where professionalization of the workforce with access to multi-week quality training programs associated with wage increases, fully functioning backup provider systems that really support workers and allow them to take a day off so that way consumers can have the care that they need during that time as well.

Robert Espinoza: Corinne, let me ask you one last question. If you could wave a magic wand and implement one significant change that would support independent providers and strengthen consumer direction, what would it be?

Corinne Eldridge: It's in addition to how I answered that last question, Robert. The long-term investment for this workforce would really make a fundamental shift in how consumers were cared for, the accessibility and availability of workers, and really would support better health outcomes with the potential for wage increases that go with these higher set of skills.

Robert Espinoza: A few times in the episode, Corinne speaks to the reality that family dynamics in the US have changed over the years. She mentions the existence of solo agers or those who age alone, whether by choice or by circumstance. They are often uncoupled, and at risk of life-threatening social isolation. Our system too often assumes that our families will be there for us when a health crisis takes over, yet it's not always true.

Biological families are sometimes the problem. A family member can abuse and exploit a vulnerable person, and they can bring histories of unresolved conflict into precarious situations. At times, what's needed is to keep the threat of family away and to consider a more broadly defined system of support for care recipients, such as friends and neighbors, with adequate safeguards and protections.

Despite these misgivings, consumer direction might be the most promising answer in this country's rapidly growing demand for long-term care. As the labor force tightens, direct care workers are best positioned to support those who need the most help, and we should be thoughtful about how they are optimized and where employers deploy them. Technology can make jobs more manageable when it's at its best, but it won't provide the person-centered frontline support that most people need.

Given this context, the people in our lives and communities are who we will need to step in for us as we age and require help, and our government should invest in programs like the Center for Caregiver Advancement and consumer direction, more broadly, as a policy choice nationwide. The public safety net should catch us along our lives, but we'll need actual people, adequately supported, consumer-directed workers to pull us out of it and to help us keep going.

Thank you to my guest, Corinne Eldridge, and to you, our listeners. If you enjoyed this episode of A Question of Care, please share it on your social channels and stay tuned for future episodes. This podcast was produced by me, Robert Espinoza, in partnership with Modry Media. Please make sure to rate and review the podcast wherever you're listening.