Incoming Executive Director of CFILC, Lisa Hayes

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COURTNEY WILLIAMS, HOST: From KVMR and in partnership with FREED, this is Disability Rap.

LISA HAYES: I think it's reminding people, really being able to have conversations on both sides of the aisle, helping to drive legislation that supports independent living.

WILLIAMS: Today, a conversation with Lisa Hayes on her unusual journey to leadership in the independent living movement and how we will navigate the challenges facing our community.

HAYES: Health care probably is the number one concern. Will we be able to maintain the care that we have? Will we be able to live independently for those of us who need in-home supportive services?

WILLIAMS: That's all coming up on Disability Rap. Stay tuned.

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WILLIAMS: Welcome to Disability Rap. I'm Courtney Williams. Today, we're joined by the incoming Executive Director of the California Foundation for Independent Living Centers, Lisa Hayes. Lisa has had a long career in health and disability policy, leadership, and advocacy. For the past seven years, she has served as the Executive Director of Rolling Start, Incorporated, an independent living center in Southern California. She also serves as an appointed commissioner of the California State Independent Living Council and a board member of the National Council on Independent Living. Prior to her service in the nonprofit sector, Lisa worked for more than two decades in health care operations and contracting. 

The California Foundation for Independent Living Centers, or CFILC, is a membership organization comprised of 24 independent living centers across the state. CFILC's mission is to increase the capacity of independent living centers to support community living and independence for Californians with disabilities, providing advocacy, training, and resources. Lisa will officially assume her role as CFILC Executive Director on November 3rd. Disability Rap's co-host, Carl Sigmond, spoke with Lisa last month.

CARL SIGMOND, HOST: Well, Lisa Hayes. Welcome to Disability Rap. It's great to have you with us, and congratulations on your new position. We've known each other for a number of years. I remember wheeling on the sidewalks of Washington, DC, with you, during the Annual Conference on Independent Living, and I want to begin there. How did you get involved in IL? You were in managed care, and then somehow you made the jump to IL. Tell me about that.

HAYES: Well, thank you, Carl, first of all, for just this opportunity to be on your show. I've listened to you so many times for several years, and this is really a cool opportunity to be a part of it. Gosh, where to begin? As you mentioned in the intro, I spent over 20 years working in managed care organizations, and necessarily, not all of that was directly related to disability services, which is how I ended my role in managed care.

I literally began in managed care because prior to that job, I actually worked for an oil company, where I did contracting. I had a crazy journey. The company was bought out by another company, and then they were moving to San Antonio, Texas, and I found myself without a job and ended up temping. It just so happened that I temped at a health plan that was purchasing another health plan, and they needed help changing out all the contracts.

That's how I got into managed care in the first place. It was working in contracting, actually, for several years, and how that evolved into disability access services was really because of the disability community demanding more access to health care. I worked for a company where some really pretty famous people were working with the plan president and the chief medical officer. I don't know if I can name-drop June Kales and Brenda Primo.

They were working very closely with the health plan I was working with and trying to encourage their physicians to be more accessible for people with disabilities. One of the things that they were really adamant about is you need somebody with a disability running this program. If you know anything about managed care, they take pride in really controlling everything about what they do.

That is why it's called managed care, and that's how they save money on things, because they have to have control over just about all of the services that they provide their members. It just so happened, and I did not get into this for altruistic reasons, which I feel guilty about a little bit, but how I ended up was literally the chief medical officer seeing me in an elevator of our organization and asking me, "Do you work for us?"

I said, "Yes, I do." Asked me where, and I said in contracting, and then he said, "Well, I need to talk with you." Literally, that is how this happened. For your listeners who don't know me, I'm a wheelchair user, so I have a very visible disability. I'm a para. I was born with my disability, and I had never before that time even heard about Independent Living. You hear often people say Independent Living Centers are the best kept secret, it's very true.

How can you live 30 years of your life without even knowing there was an Independent Living Center near you or anything about the movement? That is literally how this happened. I ended up meeting with the chief medical officer, and I thought I was in trouble for something. I had no idea what it was, and then he brought in Brenda and June and said, "See, we have somebody with a disability." It was more like check a box. It wasn't like I was the right person for that role.

I ended up, obviously, growing into it. One of the things that I was pretty instrumental in in our contract was ensuring that they all had ADA language and trying to help the physician offices understand what that meant. In a weird roundabout way, I was doing that work, but it was from a contracting perspective and contracting with physicians. That ended up catapulting me into a manager of disability access services at the health clinic.

SIGMOND: I want to pause you here. This is really interesting, and I'm just curious to dissect that a moment with you, because at least at the beginning, you were like cherry-picked because of your visible disability which we genuinely think of as problematic, but it actually changed your whole career. Respond to that. Then I'm also thinking about people with invisible disabilities. Yes, that's a big question, but take it as you will.

HAYES: [chuckles] Yes, that's a loaded question, Carl. You're right. I was not selected because I was qualified to do that job. You're right. It completely changed the trajectory of what I thought I was going to be doing for a very long time. It's hard to put this into words, but once you learn-- I learned a lot from Brenda and June. There's absolutely no question.

It really forced me to even start doing my own research and understanding what this movement was all about, because I did not know Carl. I had no clue about what was going on in our community in terms of access. You and I have had some other prior conversations, it wasn't that I didn't know that there was a lot of disability advocacy, because I myself, as a woman with a disability throughout my career, had many challenges getting jobs.

Oftentimes, when I was looking for jobs, whether or not I could get in or access the building, I would remember trying to go on jobs where literally there were stairs to get in, and I had to call and cancel it because I couldn't access it. I was denied jobs because literally I was not able to carry sand-- or their assumption was that I couldn't carry sandwiches in a board meeting to serve members of their board.

I think every person with a disability who wants to work will have a discrimination story, because it's not easy for us to find employment. While I have experienced the discrimination, I think that everybody does, I really didn't understand the advocacy that was connected to it. It was one of those things I would write off as, well, I guess, too bad, on to the next one. If I can, I would love to share a little bit about growing up and what framed a lot of this.

I actually grew up in the foster system, and I'll say that, and I had several different foster parents. One of the ones that I had had, and who, if anybody called them mom and dad, was a woman who was actually somebody who had post-polio syndrome, and her husband, who was very active, both of them were actually very active in an organization called the California Association for the Physically Handicapped, or CAPH.

This was back probably in the '80s, and where they were really, really pretty active. I had heard about this organization, CAPH, and was curious, ended up visiting it, because of somebody said, "Oh, you got to check out this group." Probably, I think I was 16 years old. I was pretty young. That was really my first experience of a person with a very visible and physical disability, and how passionate she was about access, but it was more local.

It was more like wanting to locally drive the bus. They took me on different rallies. My father was actually the president of the California Association for the Physically Handicapped, which caused a whole lot of ruckus, because he himself did not identify as someone with a disability, but his wife was, and now the kid that he was taking care of was. I remember it causing a lot of issues in that organization.

I remember he served a two-term presidency in that role. That gave me maybe a gut experience of what advocacy was all about. Obviously, then life happened, and I ended up moving out and going to college and doing that, and was not all that close to them, but I had that background. That was my whole view of what advocacy should be about. Even during that time, did not know about the Independent Living Movement, which was happening simultaneously through all of this.

Getting this job and being in this managed care organization and being called out because I had a visible disability, regardless of whether or not I wanted or had the qualifications to do what they needed, what Brenda and June were trying to encourage them to do. I don't even think Brenda and June-- I think it surprised them that they had somebody with a visible disability that now they could show off because that's exactly what that was all about, was I have somebody with a disability and she could do the job.

I think, though, even though I feel like that was a quirky way to get into, it wasn't like an intentional thing, but it was something I immediately fell into and understood. I think very shortly after that, it was recommended that I join a board of an Independent Living Center. There was a center in Downey that I joined, and ended up serving six years on that board of directors and learned a lot about independent living through that organization.

Then, while I was still at Molina, that's when I first got my experience with NCIL because they had started this healthcare subcommittee. This was around the time, and I'm sure many of your disabled listeners might know this time when the state was implementing a program called Cal MediConnect. This was this great idea that we were going to be able to have managed care support people with disabilities, long-term supports and services needs, or LTSS.

That was their first go around to try to get managed care to do more long-term supports and services to help people not just with their "healthcare" but those things that absolutely relate to and can contribute to better health. Then what I'd be talking about, having access in and out of your home, being able to take a shower, being able to get transportation to and from things.

This was really the precipice of what we have currently in California, but it was just the beginning.

Trying to convince the disability community that this was the best thing since sliced bread. That's what I was expected to do. Here I was, this green person coming new, trying to convince very seasoned advocates that this was the really best thing. I remember meeting for the first time Teresa Favuzzi. I don't know if you know who she was, but she was the director of CFILC.

If there was anybody that put me in my place, it was her. By this time, I was part of the healthcare subcommittee of NCIL. I was on the board of directors of CSILC, and I thought I knew it all. She reminded me, no, no, I barely understood it. It was really a realization, taking a step back and stop talking, and start listening. I think that's really how I advanced into where I am today.

As I progressed in the organization at the health plan, I actually advanced to their corporate side, which was really interesting because in that role, I had the opportunity to go all over the country to see wherever this managed care organization wanted to do business. If ever they were going to bid on managed care to help people with disabilities, they needed to understand who were the disability organizations in that state.

It was my job to go into those states to actually have conversations with CILs. What it really did for me was it really gave me a wide perspective of, if you've seen one CIL, Center for Independent Living, you've seen one Center for Independent Living, because they're very different, the California ILCs or CILs are different than the ones in remote rural America. I got to go to Oklahoma, and Virginia, and Ohio, and New Mexico, and Washington DC, all over, Idaho, Oregon, and to get to see some of the centers and how they operate.

Every place that my organization wanted to do business, I got to see that. That's really how I learned really more about the independent living movement was really listening, understanding, and going back to my organization and helping them to understand what the needs were of people with disabilities. I think it was a humbling experience because case managers, nurses or LVNs who have been in this role for a long time, really think that they know how to help a person with a disability.

It's expressing to them the reality, "You don't," and the importance of listening, and the importance of, "Just because you've met somebody with one disability doesn't mean they have the same needs as somebody else with the same disability." It was really, truly a deeply honor to help that company build, infrastructurally, what they needed to do to be successful if they're going to be working with people with disabilities.

My dad got very sick, the one I was talking about, and he had a heart attack, and I ended up deciding the best move for me, because I wanted to take care of him, was to leave. I was able to take a year off. It was a really interesting year because I still, once again, thought I knew how to help him, and very quickly found out that I didn't.

Even though now I had served on an independent living center, I traveled all over the country to sell other independent living centers, really to try to help him get long-term support services in the home because he was adamant he did not want to go into a nursing home. He didn't care how sick he got, he made me swear, promise, that that would not happen. Of course, I did. Then, of course, when he had his first heart attack, and they wanted to know what nursing home to put him in, I said, "No, he's coming home."

They were, of course, "No, you can't take care of him," and I said, "Yes, I can." Another thing where people with disabilities who want to take care of their aging parents, that's a really real thing, and we have to prepare for that, just as much as we have to prepare for our own needs. That's a reality. Obviously, I got him home, I got a lot of the systems that we needed in place to support him, but it was a struggle.

Just being on the other side of it, being on the side of somebody really trying to get these support systems, gave me another really real perspective of what that looks like, and then having to make the decision about hospice, and having to, "How do we set up a lot of these things?" It was just another very humbling experience, one I wouldn't trade for anything.

He ended up passing away probably about nine months after. During that process of grieving and trying to get everything settled was really difficult. It was literally almost two months after that when a friend of mine who was doing an interim at Rolling Start had called me up and just wanted to check in to see how I was doing, and then asked me, "Are you ready to go back to work?" I was like, "I suppose I should probably think about that," and then he expressed that I would have to go through the interview process, but that there was this position.

SIGMOND: Before we get there, Lisa, I just want to ask you a bit more about caring for your dad. What was that like? What did you learn him? What did you learn about yourself? What did you learn about these systems we work in now?

HAYES: Let me tell you a funny story in that respect. My dad and I disagreed on politics, but I will tell you also that being around him 24/7 was even challenging because his choice of television was Fox News, and I was like, "Why do you want to listen to that?" There were many times that we learned about each other and had to come to a realization, I think, if we just continually focus on what we were talking about, what's on the news, it became problematic because it got in the way with trying to take care of his needs, literally.

The one beautiful thing about, and I'll just be honest, he's a Republican, I'm a Democrat, and so we were fighting like cats and dogs, oftentimes, politically. This was during Trump one, and so it was a really interesting time, I will say. What was beautiful about it is, oftentimes, we would have these arguments, and I would be frustrated, because say, "I can't get what you need because of this administration," or because of something that was going on.

It would be extraordinarily frustrating. At the end of the day, we could end our conversations with, "I love you," and that was really great. What it made me learn about myself was, certainly, I had never done this before, and I did not know, even though I told the nurses and the doctors, "Absolutely, I can do this." Of course, I'm going to doubt because you don't do that every day, you don't take care of a family member, and so I was concerned.

I was a little nervous, but I was fortunate enough to connect with the Center for Independent Living that was the closest to him, who helped me out tremendously. Part of it was trying to get caregivers. That was extraordinarily helpful because he needed round-the-clock care, so I had to make sure that we could do that. There was assistive technology that I needed. How was I going to help him in and out of bed?

Literally, we had a ceiling lift, which was installed, which was perfect, because I could do it. I could actually scoot the sling underneath him, and he could do the rolling back and forth and connect everything, and could get him into his chair, get him into-- Literally, those things I found out I could do, which I honestly didn't know. A lot of us, we don't often know what we can do until we try it.

He had pretty severe diabetes biabetes on top of everything. There was some wound care that we needed to coordinate. It was really, when you're taking care of every single aspect of what's going on, but once you get systems in place, then things tend to run, generally, I want to say, smoothly. I mean, it's never smooth when you're watching somebody progressively get more sick and then eventually die, but that is life. That is the life that we have to realize.

Then the thing that kept me going was my promise to honor his wishes. It would've been much easier, certainly, to put him in a nursing home, there's no question, but that was not what he wanted. I have a son who was also very helpful during this time. There were things that we just needed to do, and we did it. Sometimes you don't think about it, you just do it. If I had to go out, I tried to help him utilize as much of his strength that he could.

Having meals prepared for him so he could easily access them if I needed to go run errands or do something. There was a lot of learning about what I could or could not do. I think at the end of the day, I was able to honor his wishes. He was a rather big man, and there was one instance where he had to go to the hospital. I want to tell this story just because it's something that a lot of people don't think about that the first responders when they came in, there was no way they could get the gurney around a corner and into his bedroom.

It was probably one of the most humiliating things that he had to go through, because what they did was they rolled him in a sheet to carry him out, and then they ended up dropping him, which was just a horrible thing. You don't think about having to prepare for something like that. Can first responders come in with a gurney? There was just little things like that that were beyond my-- you don't know what you don't know. There was just a lot of little things.

Learning about how to do wound care, learning about how to do all these things, and making sure that the people that you hired to help out knew how to do them. There was three caregivers managing the amount of time that I had, it was difficult. Along with all of that, having to rely on an independent living center was something I realistically had to do. The executive director at the time was such a big help and trying to help me because I didn't even know-- when it came to assistive technology, you don't know what's available.

It really shaped in my role as an executive director how to coach and our AT people because a lot of people will come into a center for independent living, maybe because somebody told them that they can help with this, and not realizing about other services that they could be provided. Being on the side of really needing those services really helped also shape how I advanced into where I became.

SIGMOND: Great. Thank you so much. In the spirit of time, I want to skip over your whole time at Rolling Start. For people who are not familiar with CFILC, what is it?

HAYES: Sure. CFILC is the California Foundation for Independent Living Centers, it's a membership organization. The centers in California have the option to join this membership. The whole goal of CFILC is to help independent living centers build capacity to serve the disability community, provide opportunities, be there, look to learn about grant opportunities, be supportive in other areas.

I think one of the most beautiful things about CFILC is the peer support. If you know anything about the Independent Living Movement, one of its foundations is peer support. I cannot stress the importance of this because oftentimes, as a person with a disability, my experience is going to be different than yours, Carl, and yours obviously different than mine, but there's so much we can learn from each other in terms of how to navigate certain things or maybe perspectives of certain things that I didn't realize.

That's the beautiful thing too about CFILC, is that its board are the executive directors of its members. There are many things that we need support in to manage our independent living centers. I can tell you, I utilized several board members, several of the executive directors, and that's one of the beautiful things to help navigate certain challenging waters in our organization.

SIGMOND: One program that I just want to lift up because it's a program at FREED, but it was really driven by CFILC, is the DDAR program, Disability Disaster Access and Resources. I know here at FREED we've done a lot of work with that program. For people who are in Nevada County, please go to our website freed.org to learn more. Lisa, can you talk about the program, and how CF has really been a leader in that?

HAYES: The DDAR program or the Disability Disaster Access and Resources program, is probably one of the most unique programs to California that I can honestly say a lot of people in other states look at. How that program began really was there were the Northern California fires, and I believe Paradise was probably the one that comes to mind. That was one of the deciding factors, was that when you look at what we experience here in California, wildfires, a lot of different disasters.

During this time, if you think people with disabilities and the older adults are generally the ones that are the most affected by these disasters. Perhaps they have a caregiver who can't get to them to help them evacuate, or perhaps they are deaf and did not hear any warnings about the disaster. Perhaps they're quadriplegic and cannot physically access an evacuation order. What we found as a result of these disasters, that people with disabilities and seniors were the ones that were dying and losing their lives because there was not systems in place to help them evacuate.

To avoid some of these wildfires, the energy companies like PG&E, Southern California Edison are shutting power down so that old circuits don't catch fire and make a bad situation worse. Generally, sometimes really good programs come out of lawsuits. There was a lawsuit because they felt that there wasn't enough done that could have been done to prevent a lot of the horrible disasters in Northern California, with the Northern California fires.

As a result of that, because people with disabilities and older adults are so marginalized, we were asked, we were screaming, we need to have better programs in place. Those conversations began happening with PG&E, and they were the first, really, this collaborative partnership to work together to try to figure out, "Okay, how can we put systems in place that would help somebody survive a disaster, but also survive a power outage?"

A lot of people don't realize or think about when your power goes out, if a person with a disability is reliant on power devices, how that affects their life. If it's somebody who uses a power chair, if it's somebody who has a special type of mattress because they're a paraplegic or quad and really need airflow, that literally without that would get pressure sores and that could get infected, that could kill them.

When people had oxygen concentrators that absolutely needed oxygen to survive, CPAPs, BiPAPs, even smaller things, people who take medication that has to be refrigerated. If your power goes out, they are significantly disadvantaged, and it could have an effect on their life. The DDAR program was developed, and is administrated by the California Foundation for Independent Living Centers. This is actually beneficial for the energy companies.

Why? Because they only have to contract with one person, and then CFILC has access to all that can do the contracting with the centers for Independent Living to be these DDAR centers. What the DDAR program can do is, of course, help people prepare for the disasters get set up with medical baseline.

If they have a powered device, get a backup battery. These things are crucial to help the disability community survive and thrive in a disaster.

I hope that wasn't too long of a response, but yes. That's how CFILC works with the energy companies through that program. Then they turn around and contract with the different centers, FREED being, of course, one of the first because of where you were located, to really be successful in this program. A great moment for a lot of us.

SIGMOND: Thank you, Lisa. As we begin to wrap up, I want to turn us towards the future, both here in California and nationally. We are seeing attacks at the national level on members of our community and, more specifically, on the services that many of us need in order to survive and thrive. Where are we as an independent living movement? Where do we need to go?

HAYES: Great questions, Carl. It's a tough one to answer, I'll be honest. It's really why I wanted the opportunity to serve in the role as the director of CFILC. I felt like I could hopefully be able to blend my background to help us navigate some of these waters that we're up against. You're absolutely right,w e're getting attacks from all over. Health care probably is the number one concern. Will we be able to maintain the care that we have? Will we be able to live independently for those of us who need in-home supportive services?

These are really difficult questions, and I think that advocacy is going to be crucial. I believe that collaboratively, there needs to be collaborations in spaces where we probably didn't do that before. The one unique thing about the independent living movement is that we are a disability-led organization, which is different than many organizations that support people with disabilities and seniors, but they're not necessarily from the perspective of being disability-led.

That's what makes us unique, but we are going to need to work more collaboratively in advocacy situations with many other organizations. It's great. We have the relationship with NICL, yes. Great that we have with our state partners and our federal partners, but more so, we need to broaden that net quite a bit because this is going to affect all of us. I think that is one of the opportunities that I think that we need to really take advantage of.

We need to look for funding, perhaps, that is not necessarily federal or state funding. That's going to be critical in order for us to survive. I think ultimately there's a lot of education, and I'm sincerely mean this, on both sides of the aisle, because I think that the independent living movement, we can tell a unique story that ultimately what we are doing and the work that we're doing and supporting our community, saves the government money.

I think that that's a message that we need to remind people that by helping us to survive independently in our own homes is a lot cheaper than paying for services in a nursing facility or a rehab facility. The centers for independent living have always worked on budgets that were minuscule. I'll even use the term budget dust in terms of some of the bigger things that are being paid for.

I think it's reminding people really being able to have conversations on both sides of the aisle, helping to drive legislation that supports independent living, really looking for those partnerships. One of the unique things that previous executive directors of-- Christina Mills, I'm going to drop her name, they were involved in organizing the aging and disability resource connections.

I'll be really honest with you, if you talk about ADRCs in other states, it is not as favorable as it is in California. Why is that? It's because in California, it is a mandatory partnership between the Independent Living Center and the Area Agency on Aging, which isn't the case in other states. Because of that, it forces us to work together. It is difficult, there's no question.

Philosophically, we disagree on things, but we have really had to learn each other, and we have to look at how do we collaborate so that we can benefit both of our communities, aging people, aging into disability, people with disabilities under the age of 60. These are extraordinarily important that we work together because we can work together and get funding that will help that. That is, my hope is, is to build collaborations work legislatively, being able to talk with both sides of the aisle and tell our story, better communicate the independent living story.

I don't think we do that good enough. I want to have that opportunity to do that. Why is it that I could say I lived 30 years without even knowing about an independent living center? I don't think my story is unique in that. I think there are people with disabilities that truly don't know that we have a history, that we have a culture, that we have really an amazing system set up to support one's independence.

It is my passion and goal to carry CFILC, helping the centers navigate some of these crazy waters that we've got ahead of us. Doing a lot of educating, hopefully, a lot of public speaking, hopefully, and looking for additional funding sources, so that will help us survive and thrive, whatever is ahead.

WILLIAMS: That was Carl's conversation with Lisa Hayes, the incoming Executive Director of the California Foundation for Independent Living Centers. 

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And that does it for the show. Disability Rap is produced and edited by Carl Sigmond and me, Courtney Williams. You can go to our website, disabilityrap.org, to listen to past shows, read transcripts, and subscribe to the Disability Rap Podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We're brought to you by KVMR in partnership with FREED, and we're distributed by PRX, the Public Radio Exchange. For Carl Sigmond and the rest of the Disability Rap team, I'm Courtney Williams with another edition of Disability Rap.