The Independent Living Network with Jane Johnson

Jane Johnson is the Executive Director for the Florida Association for Centers For Independent Living (FACIL). Created from the 1973 Rehabilitation Act, there are now 15 centers of Independent Living throughout the state of Florida and nearly 500 across nationwide.

Jane joins us to talk about why Centers For Independent Living are important and why they matter. She shares examples about how people with disabilities can become advocates for systemic change and what is needed to navigate our current political landscape by allowing our values to guide us towards being the best version of ourselves for the greater good of the people we serve.

SPEAKERS: Jane Johnson, Tony Delisle

Tony Delisle  00:00

United we stand and divided, we fall. January 7 2021, as we’re recording this episode that you’re about to hear the day after in DC when they were going to certify the election that the Capitol was breached. And so this is serendipity in a way, because our guests as somebody that is the executive director for the Florida Association for Centers for Independent Living. Her name is Jane Johnson. She works in Tallahassee, and works closely with legislators and other agency directors, to advocate for policies, and programs that really help to serve and meet the needs of people with disabilities. So in other words, this was a podcast that we already intended to talk about legislation and politics and how to push forward issues that are important to people with disabilities. And so it’s hard to ignore the time that we’re in especially less than 24 hours after this incident happened. And so I find it very timely. The purpose of this podcast is to really shed some light on what the Independent Living network is. Centers for Independent Living, are throughout the state of Florida, there’s 15 of them, and nearly 500 of them in the country. Centers for Independent Living were created from the 1973 Rehabilitation Act. And together are a network that provides services for people with disabilities all ages, and they’re free services to the people that we serve. In Florida, we have an association where the centers, nearly all centers are a member of the Florida Association for Centers for Independent Living, FACIL. And with this interview with Jane, she talks about why Centers for Independent Living are important, why they matter why FACIL matters, how people with disabilities can become advocates, not just for themselves, but for systemic change that they’re looking to see in our society. She talks about some of the hot button issues of the day that are out there. We also get into what is needed to navigate these political waters that were in. Very divisive times is certainly the events of yesterday, illuminate. So we talked about what are the values that we need to help us and guide us and be our compass to be the best versions of ourselves for the greater good of the people that we serve. When times are so divisive. And offending one another seems to be the disorder of the day. And then we talk about her vision for a better future, and talk about some of the things that are needed in order for us to be the best version of ourselves so that we can serve other people to the best of our abilities. Hope you enjoy this interview. And I want to leave you with a quote that peace is not the absence of conflict. Rather, it is our ability to resolve conflict through peaceful means. It comes from Ronald Reagan, when he was working to dismantle communism, bring down the wall that was in East Berlin. Very contentious times very difficult issues from people that really didn’t see eye to eye. And I think that is the order of the day. How can we resolve some of these conflicts and issues that we have through peaceful means. For me, I believe conversation is a very important part of this. And if we can’t communicate and have conversations with one another, then the alternatives are not as desirable nor diplomatic and often turned violent. So I think this is a very important time to hear a conversation like this to learn a little more about the legislative process, how to advocate and really how to have the values that are needed to solve some of the incredible issues and challenges that we face in our day to day. I hope you enjoy the podcast. And welcome back to another episode of The Independent Life. I am excited as I’ve always been in these first episodes because the first list of people that are coming onto the show are like my A-list of favorite people. Can’t wait to bring him in and talk to him and Jane, you’re certainly one of them. Bringing you in on the heels of a few others that are coming before you really shows the diversity that this high cast is aiming to achieve. So we just recently had a couple guests on from the University of Florida, and I believe your pedigree there Jane represents perhaps a Florida State University is that correct? FSU?

Jane Johnson  04:36

Actually no, I went to Georgetown University, but I have a daughter who went to Florida State and a daughter who went to Florida so I’m…

Tony Delisle  04:42

Oh, yeah. You’re you’re part of the tribe. Yeah. Yes, again. Yeah. So I would consider you part of the Seminole nation so and we had people from Gator Nation on and I just think that’s wonderful that we can have a diverse space where we invite such people during the conversation. That’s right. That’s right. So as executive director for the Florida Association for Centers for Independent Living, we’re going to be saying FACIL quite a bit in this conversation. And that’s what it stands for Florida Association Centers for Independent Living. You are the director of a board that has 15 other directors and centers throughout the state of Florida. So first off, you’re challenging, right there of having 15 directors, which you helped to serve and carry out our mission and, and desires and all these other kinds of things. I said, I think it really takes a strong person, have a high degree of character and fortitude, and flexibility and creativity and all these wonderful things. So I just want to first of all, acknowledge you for what you do for the Florida Association for Centers for Independent Living, and want to zoom out a little bit even from that and ask you, Jane, you know, why should people care about people with disabilities and issues that are related to having a disability?

Jane Johnson  06:03

Well, and I’ve heard you articulate this before, Tony, but and so I’ll repeat it, but everyone has a disability is going to have a disability or used to have a disability of some sort. So I, for one, we should care about people with disabilities, because we should care about ourselves. And because disability is so prevalent, and you know, we’re, I just, it’s hard to answer that question, because I can’t imagine a reason why you wouldn’t. It’s something that should be natural, instinctive, and part of living a full life, a full and balanced life, where we’re not completely self centered, but looking at the world around us, and trying to invite in and learn and learn from and live with people of all types. And that includes disability includes socioeconomic differences and racial and ethnic disparate differences. But to me, that’s the recipe for a good life and educated and informed life. So I just I can’t imagine why someone would be like, why should people drink water? Because you need to, I guess you could not drink water, but you’d have a pretty dry life, if you didn’t.

Tony Delisle  07:08

Beautifully, said, Jane. So why do centers for independent living matter? Like why should people with disabilities or even those without disabilities, you know, come to know or understand or even utilize Centers for Independent Living? What is our place there?

Jane Johnson  07:20

That question has become more difficult to answer as the state and federal governments have added additional programs on top of the infrastructure that was created, and sort of envisioned when the Center for Independent Living were established in federal law, but Center for Independent Living are the only organizations in the country that serve all disabilities, and all ages. They are designed to be a one door or No Wrong Door resource for people with disabilities. And they here in Florida, they’re designed to serve all 67 counties. So we have a statewide footprint that serves all people. And each Center for Independent Living looks different, because by design, they mirror the population of the communities where they’re located. So they are, they’re responsive, and they are, they’re local, they’re accessible. And that but in addition to the Center for Independent Living, there’s a whole host of different organizations that have been created over the years that also serve people with disabilities. But it’s there are different eligibility criteria. They’re different age groups that they serve, there’s just a lot of different accesses to entry, which I think creates confusion. So people should know about Centers for Independent Living, because if you have a disability, and you have a question, or you have a need, you can always go there and get your questions answered, you might be referred on to a specialist, but at least you know that you’re not going to pick up the phone and call the an organization that only serves one type of disability to be told you need to go somewhere else. So I think that that’s why everyone should know about Centers for Independent Living, because they should be the first place we go to. And ideally, I’d like to work on reducing the number of steps that people have to go through to to get the to the answer to get their needs met, or to connect with people that can provide a support that someone might need, because, and I know from my desk, because we’re the central office, I get a lot of calls from people who I’m the 24th person they’re calling trying to get a simple question answered, and they’ve called everyone and can’t find out where they can get that answer. So it’s really from a consumer standpoint, it makes a lot of sense to have Centers for Independent Living that are the sort of the universal place to go for all disabilities.

Tony Delisle  09:43

Yes, so all disabilities all ages. And for us to be that No Wrong Door approach to systemic navigation and getting the people the resources services they need is very important and well said that we are one of those entities that can really provide the Quick Access. There, as you mentioned there 67 counties in the state of Florida. And there’s a Center for Independent Living that is responsible for every one of those counties. So we have 15 of them in the state. And like you said, while we’re unique in the sense that we are tailored to meet the needs that are specific to the communities we serve, which is fantastic, because the diversity that is here in Florida, we also you know, have a very centralized service orientation to the five core services, independent living skills. I in our services, information, referral, advocacy, peer supports and transitions. So I love that in one sense, though, we’re unique. And in one sense, there’s something that really connects all of us together, we all have, who share the same spinal cord, for instance, but you know, their arms and legs and everything else may look a little different, based on you know, kind of the the people that were responsible for serving within our catchment area. So to take that now, 15 centers, most of which are members of the Florida Association for Centers for Independent Living facile. So we’re all members of this organization, you lead us as the executive director, who has an office there in Tallahassee at our state capitol, to talk to us then about well, why is it important to have a statewide collaboration between all the centers, and then have a kind of centralized command with you, there’s the home, Captain Jane, really helping to lead us and collaborate with us and really leverage, you know, everything that we’re trying to do, why does FACIL matter in terms of the Independent Living network?

Jane Johnson  11:30

Well, because independent living,  centers for independent living our service providers, they rely on federal and state funding, and any entity that relies on state and federal funding should have a presence at the Capitol, because that’s where the money comes from. And, you know, Centers for Independent Living are, and I was gonna go back to something we said earlier, because we are no wrong door resources. But we’re also unlike most disability serving organizations, sales aren’t providers necessary in the traditional sense of the word where there are monetary transactions taking place, and the organizations are making money off the volume of people they serve. CILs are people with disabilities, CILs are received by law. And in practice, it was at least 51% of the employees at a Center for Independent Living have to be people with disabilities. So these are the disability community that sales are the disability community, helping the disability community at large. So it’s it’s different they are they really, their mission is different, their, their bottom line is different, because their bottom line is human, where the bottom line of most provider organizations, obviously is money because that’s your mean, they have a fiduciary responsibility to their leadership. So that is a differentiator that I think makes the seals unique. But because you serve 67 counties, and there are only 15 of you there, certainly there’s not enough resources right now that are allocated to Centers for Independent Living for them to do a realistic job of adequately serving all of the need. And I think this, it’s amazing what gets done on the little amount of funding that they receive. So the presence at the Capitol is one to advocate for additional resources, but also to track legislation and policy that may impact people with disabilities. So not only distills look out for themselves, and FACIL looks out for the CILs. But FACIL also looks out for the disability community to try and advocate when we see something that that’s a proposed bill or proposed rules or policies that could have a negative impact on people with disabilities or that could be enhanced or improved. And, and we also make suggestions about increasing funding or improving programs. So we, on behalf of the Centers for Independent Living, who each represent the people in their communities, we sort of roll all those all those needs up to facile and then facile represents those needs to the legislature and to state agencies because that’s the other piece about being in Tallahassee that people sometimes forget, even though the legislative session is only 60 days long rulemaking policymaking and you know, agency procurements happened 365 days a year. And it’s really important for someone in Tallahassee representing the sales to have relationships with the people that are making that decision, those decisions so they can hear the perspectives of the Centers for Independent Living, which ultimately are the perspectives of consumers. So and I am not the leader, I’m standing on the shoulders of the sill directors who are taking input from their consumers. So it’s it’s definitely a an organic approach, which I love because it is grassroots in the true sense of the word we don’t we’re not an industry, we don’t have a product that we sell. We are you know, we all are committed to try to improve life as much as we can and make life as accessible and independent as possible for people with disabilities. So no, we’re not trying to monetize something. We’re trying to to raise awareness and increase our ability to play a role in people’s lives.

Tony Delisle  15:05

You know, I really want to highlight some of the things that you just mentioned there about Centers for Independent Living is that our services are free for the people that we serve, which we refer to as consumers. And that it is consumer controlled, which again, we take the feedback from the people we’re serving, and provide the services that they’re telling us that they need. So it’s very tailored to what their identified needs are. And like you said, Centers for Independent Living over half of the staff, over half of the board have disabilities, people with disabilities, serving people with disabilities, I find it to be just a incredible model, that really seems to work very well. And I really appreciate how you fold all this into really having a collective voice among all the different centers from this state, and they’re at the Capitol to talk to the legislators and other, you know, agency directors and people that work in, you know, the just the multitude of areas within our government. In doing that, we really get into the space of advocacy, this is something that we really try and promote here at Centers for Independent Living, trying to teach people how to advocate for their own needs, but also in terms of systemic advocacy, which is what we’re kind of talking about here. Imagine, you know, you’re a person with a disability, you know, you have an issue that is very important to you, perhaps it’s, you know, you know, parking spaces, it’s equitable health, it’s employment, it’s getting graduated from high school, there’s just something that’s near and dear to your heart. And, and you want to, you know, get more involved in this realm of, you know, advocacy at a legislative or even a policy level. How does one go about really kind of learning, especially if you don’t have the experiences and the knowledge and the know how the wisdom that you have Jane, you know, how does somebody with a disability really start to learn more about the issues and getting involved in terms of making an impact?

Jane Johnson  17:00

I think there’s a lot of good examples I can think of over the years where people with disabilities have approached legislators directly, either through emailing them or attending a legislative delegation meeting. Or, you know, there’s a young woman down in the Tampa area who was actually had a job working for a legislator, and had to inform her boss when the boss wanted to give her a raise, that she couldn’t get a raise because she relied upon a program, a state funded program that had income restrictions. So she made more money, she would lose her benefits. And when the legislature heard legislator heard about that, she was outraged. She had no idea and this is what someone who had served on healthcare committees and had overseen the development of policies around the Medicaid waiver programs. She realized the impact that this was having and the unintended consequence, it had of limiting people’s employment potential because you were tied to a low income to receive a benefit, which didn’t make any sense in terms of allowing people to achieve their full potential. So from that conversation came up a proposal that was adopted by the legislature and we Florida has raised the income limits for people who receive Medicaid waiver services. So that’s like a, an extreme example of someone getting a job as an aide and then legislators office and educating that legislators almost accidentally, but it shows you what is possible. But another sort of more pedestrian example would be if you’re first emailing your members, first you have to find out who represents you in Tallahassee, who are your local House and Senate members. And you can find that on the House website and the senate website, you can see if you’re a voter, then you can look at your voter registration card to see what district you’re in. If you’re not a voter, then you should as soon as this podcast is over, go figure out how to register to vote.

Tony Delisle  18:45

That’s really important. That’s one thing centers help people do as well.

Jane Johnson  18:49

Yes, and if you do not register, then call local Center for Independent Living, and they can walk you through that process. And if you have a disability that you think is going to make it difficult to register, they can help you with that. And they can also help you vote on election day or before election day. So but you know, getting involved in the process, first as a voter and then as a constituent in your local representatives and senators, districts, making sure that you know how to get in touch with them, make them aware of an issue. Remember that they are really busy, but they usually hire really good staff. And so it’s it’s okay if you just have a conversation with a staff person in someone’s office and not them directly. Because a lot of times, legislators will take their cues from their staff because they they hire those staff for their policy expertise and you know facile and it’s in the sills have developed really good relationships over the years with several legislators who understand their issues and who are kind of our go to people. But every two years we have turnover in the legislature. So we always need to be recruiting new allies and new friends. But I think the most important thing piece of advice I would give is that every legislator is a person. Just Like us, and every agency head is a person just like us, they live they breathe, they have families, they cry, they they get depressed, they get, they feel insecure, we all have that. I mean, the universals of the human condition are shared across everyone, regardless of what your abilities or disabilities, so they’re just remember the things that unify us. So don’t be intimidated. And, and be, don’t be angry, light be deferential. But also remember that your personal story will probably resonate more than kind of a five point. Issue brief or a passionate request for something that’s just absolutely not right. That can be off putting an intimidating, especially if someone’s not familiar with disability, but if they’re meeting a human being, and you’re speaking human to human, and you’re humanizing the issue that you’re trying to, to make make traction on, I think you’re generally going to be more successful that way. Because again, this is we’re all humans, AJ have a title, but they still have their humanity, the humanity, they don’t leave that behind. So, but it’s easy to forget it because we’re a culture that likes to put people on pedestals if they have fame, or notoriety, but it doesn’t, doesn’t diminish their humanity, it’s still just a big as big a part of them as it is in you.

Tony Delisle  21:23

The… I love your answer, they’re going back. So we have more in common than we do differently. And I appreciate you really illuminating the humanity that we all should point towards and share in that commonality with one another, I really think that could go a long way into discussing some of the hard issues that are out there having empathy and relating and connecting to people. And we find in you know, in this space, this podcast, that you we can find a lot of unity through disability. And I imagine that your conversations with people at the legislature department heads perhaps may or may be a lot easier, people have experienced disability and their own family or their own lives and, and can really connect in that sense. So that’s why I really appreciate you sharing that if people really want to advocate telling your story. You know, learning learning how to tell your story to people that are decision makers can really go a long way and complement what I think you do very well Jane and many of us as directors often do is we we’re data driven. And so we’ll bring in the stats that show these disparities in education, employment, health, transportation, housing, all across the board, we got reports and all these other things that are critical to be informed about making the right decisions. But then, you know, the the heartstring part of this is that, you know, this data represents eyeballs, hearts, you lives of people, and it can get lost in the data that is needed. But I think it really closes the an important part of the circle that’s needed to come around people and and do those kinds of things.

Jane Johnson  22:52

Well, and you want to differentiate yourself. And I say that because I spent a couple years working in the Governor’s Office of Policy and budget and the governor has the final say on the state budget every year. And so his policy folks were the ones we had a look at the budget and make recommendations to him about what vetoes to to make, and we also had to make recommendations about what we should approve in when he put out his budget. So because of that the way the process works, because the people the lobbyists here in Tallahassee knows who’s having that input, and who can influence those decisions. So I would literally have lobbyists come through my office all day long, just cycling in and out trying to make their case about this issue or that issue. And it really became I became numb. And I just one more, one more, one more. And I found that people were who were able to differentiate themselves from the masses and make their stories more personal. stuck with me and you know, and sometimes I really liked it sometimes I really did and but it it wasn’t just another lobbyists lobbying on behalf of a company that wanted money because usually it was money or and sometimes it was a policy change. So I think it’s important to be human to differentiate yourself and to sort of seal yourself in the in their psyche. So they they know when they see that issue. They think about you they think about your story or the story of the family member that you shared. So that opens the door for you. But then once you’re in the door, you need to speak their language. And that language right now and at least for the past 20 years because we’ve had a republican dominated legislature and governor’s office is fiscal conservatism. Conservativism. So if you’re asking for a policy change or an appropriation, you have to like Tony you just mentioned, you need to have the data available to be able to show there’s a return on investment. You need to be able to show why this isn’t just another pot of money layered on top of all the money they’re spending because most legislators don’t understand the budget and they don’t understand the myriad programs that are out there getting funded to serve disabilities and and all kinds of other services. So they, they see, you know, an ask as just another thing on top of everything else. And it’s really important for you to demystify that for them, and show them in as simply as possible. You know what, what you’re asking for, and what the outcome is that you want to achieve, and then what the benefits to the state will be from that outcome. And so if it’s allowing people to live more independently and achieve their economic potential, like raising the income limits for people with disabilities to receive Medicaid waiver services, then you can talk about what happens now that they’re in fully employed, they’re buying more they’re paying taxes, they’re able to do more things by themselves are able to be full participants in the economic society. And it reduces their reliance on other publicly funded programs set like food stamps, or housing vouchers or other things that have been created to help people who have low income. So I think that’s really important to be able to tell that return on investment program. And just, you know, I would highly recommend that people watch a couple of legislative committee meetings so you can get inside the heads of the legislature and understand how they think and what what kind of questions they asked, and what’s important to them. But again, at the end of the day, especially if it’s an appropriation, when they’re going through the budget and trying to decide what to fund if they can associate an issue with a person or a story, you’ve stuck, you’ve got stickiness, you know, that you’re not just one of many things that they’ve got to go through and, and figure out what you know what to cut what to keep. So I think that that’s really important.

Tony Delisle  27:01

It’s kind of like you were hitting the mind with the data and the heart with the real life stories that the people are experiencing. And I really appreciate how you just did a basic civics one on one right there and look forward to further episodes where you can get real granular and in a stepwise manner of like, you know, I know that, you know, you live in an area where there’s a representative and a senator in the state capitol, that are responsible for being your voice, find out who they are, reach out to them, don’t be dissuaded if you get a hold of a staff member, and you may be talking to them, and not that person, that’s up to Tallahassee because they can be a very influential with the person that you’re trying to reach. And perhaps keep going back and, and having the the ability to make human connections, learn how to tell your story, speak their language, if there are fiscally conservative. So again, like you’re saying the return on investment, you know, Centers for Independent Living or, you know, providing the services and because they’re providing the services, someone that was receiving, you know, benefits, got a job, and now they don’t need benefits, because they have a job and they just say, you know, so being able to talk the language, you just right there, I think laid out a really good stepwise thing that people can get involved in. And I would even go even closer to home and say, you know, find out where your city or county commission meetings are, and when they’re being held. And and that’s really local and and and if just getting, you know, familiar with the process itself, is huge. There’s so much to learn. I imagine it’s, you know, even for yourself a veteran, and this is still continuing learning the Civic process and all these other kind of things that are out there and what influences people, I appreciate you given a really good like civics one on one there. So what are what are some of the specific issues that are right, foremost there, the Capitol, whether they’re never present issues that you know, with disabilities as always working to overcome? Or what are the hot button issues that are trending there at the Capitol that people should be aware of?

Jane Johnson  29:02

Well, as you can guess, the COVID-19 pandemic is really eating everybody’s lunch, it became front and center, you know, the House and the Senate and the governor’s office, each and announced their, their big priorities prior to the pandemic happening. And those pandemic those priorities really have had to take a backseat to figuring out one how to get you know, flatten the curve, which we thought we had done and never the curve is back up. And now we’re in the mode of trying to figure out how to get the vaccines deployed. So in a way that that is fair, equitable, and effective. So that sounds like a cop out answer. But that really that’s that’s a huge priority right now. we dodged a bullet on election, election integrity, because we had a good election here in Florida so that that could have been an issue. It’s been an issue in the past. So

Tony Delisle  29:52

I think you’ll see hanging chads.

Jane Johnson  29:55

I think, I think Georgia that’s going to be front and center and you know, in their session. That’s all I think you’re gonna see, I know that there’s legislation with putting stricter penalties on protests, violent protests and yesterday’s events in, in Washington DC will probably influence how that that dialogue goes, you’re going to see. And I hope this happens this year. But for the past several years, Senator Jeff Brandis from the St. Pete area, has really been trying to push for criminal justice reform, which is so important. And I think for people who have mental, mental health disabilities, I think that’s a really important issue. And people with substance use disorder as also because a lot of people who are incarcerated are incarcerated as a complicated as it because of complications related to mental health issues and substance use disorder. And he’s trying to take a look at people who are incarcerated and make sure that the right people are there, and that people who are nonviolent offenders who have other things going on in their lives that kind of got them there can can have another path besides incarceration. So you’ll see that you’re gonna see a lot of environmental attention on our water supplies, and some the Republican House and Senate leadership have acknowledged the importance of I don’t think they’re calling it climate change. But water encroachment, we know there’s we’re seeing our shorelines get smaller and smaller. And so I think there’s going to be a tension there. But it’s really hard to say, and I don’t mean that I don’t I really am not trying to dodge your question. But COVID-19 has, has had such an impact. It’s impacted education. So I think you’re going to have to see a real engineering of how students are educated if they’re not able to come to the classroom. Teachers have been stressed more than ever before. And teacher pay was a big issue for Governor desantis in his first term. But we may see that come back again, you may see some, the Marjory Stoneman Douglas commission met, continued to meet and the results of their most recent report were escaping in terms of their evaluation of Florida’s mental health system, because it’s like it’s very balkanized is broken up and it’s spread out across multiple agencies that are not connected, and the don’t communicate and people get lost. And the ultimate outcome is that services are not delivered well, and people, we spend a lot of money on mental health, but we don’t have good outcomes to show for it. So I think it could be any, any one of a mix of that with COVID kind of being the know the gorilla in the room, pushing those off the table if things don’t get better soon.

Tony Delisle  32:32

Yeah, yeah, I want to comment on some of the issues you brought up there related to social justice, everything that’s going on right now. And that area, you’re bringing up, you know, mental health, incarceration Centers for Independent Living, were really formed because of the way that people with disabilities were institutionalized. So the 1973 Rehab Act comes along, and Congress mandates funding for Centers for Independent Living, to transition people out of institutions, and back into the community. And I’ve heard other people say, and I would also agree that, you know, our modern form of institutionalization is the over incarceration of people with disabilities and the rates of people with disabilities that are already in our prisons, and we tend to in prison, our population more than almost every other country in the civilized world is very high, and perhaps preventable. And we should maybe start looking at this as our modern form of institutionalization, we, you know, often hear about the school to prison pipeline that many non white youth are, are on and in many of this could be prevented, diverted. And that’s part of our mission, you know, is to really go into those areas. And I think we have a really key role to play there. And mental health being something that’s really out there right now with as you’re saying, with the the school shootings and the commission that still works on that, this is a very important place for us. You bring up also, you know, the times that we’re in with COVID. And so we’re, it’s January 7, 2021. Right now, people with disabilities are more impacted by the COVID virus for a variety of different reasons, and has been very disturbing and in many ways, the fact that people with disabilities tend to get the virus and are more likely to die from the virus. And there was inequities that are out there. And now we’re in a moment of where vaccine amazing feat of science has been created and getting the distribution out there presents all kinds of access and functional, you know, kind of issues that that can be out there in the messaging that communicating you know, people that are barriers to getting the vaccination and all these other things are so much in play right now. And the messaging right now that’s going out, we really need to be thinking about how we’re, it’s being sent out and so it’s accessible for everybody, especially people with disabilities that might, you know, have, you know, either a language barriers or have, you know, intellectual barriers or just all these other kinds of things are out there. So that’s that’s a huge place that we’re at right now. And we’ve been You know, in a COVID type environment since March of 2020, I believe that marks are things when our center close. And so you know, we’re closing in on almost a year now, in a transition into this post COVID world, how have you seen Centers for Independent Living? make this transition? Now again, you’re you’re you know, up there in Tallahassee, you represent all 15 centers, you got a pretty good bird’s eye view of how all of us as being the different 15 centers in the state, how have we adopted pivoted to this time in COVID? Have you seen that, from where you sit?

Jane Johnson  35:33

As you’re asking the question I’ve got this image in my mind is of a drop of water in a lake that like creates ripples and goes out and out and out. And I because because when what I remember happening, and we would have daily calls, at least weekly calls with all of the centers throughout this, you know that the first weeks of the pandemic, but we saw, I saw the center’s first look to their own people to their staff and their team and make sure everyone was safe and figure out what what they could do. And as you mentioned, use you closed down on March 13, most of the centers had to close down because of local ordinances. We then were told we were at Center for Independent Living were considered essential providers. Yes, there was a shift to figure out how can we continue to be available to consumers, but not be open for business in terms in a physical way. So so the first ripple was, the centers took care of them, their their people, their teams, and their families and the consumers that they knew in their sort of immediate network that they had a lot of frequent contact with. And then from there, I just watched Center by center, different, each one reacted differently, but all creatively and nimbly, to figure out how they could continue serving people by phone by, by zoom, and all the skill Center for Independent Living had an opportunity to upgrade their technology infrastructure. And they did that they made those investments with the consumers in mind to figure out how can I best stay connected? Can How can I see my consumers? How can I keep them supported through a pandemic, when I can’t, my doors can’t be open, or we can’t have face to face visits. So I watched the centers evolve into technological organizations, you know, virtual organizations, literally, I mean, it was literally overnight, it was amazing how fast the very cool thing for me as as facile director was watching the center’s each learn from one another because we would have these regular calls. And the director would say, Well, how are you doing this? or How are you doing that? What do you do about this, and so they would idea share, they would they would collaborate, they would, they would kind of learn from each other, it was really amazing to see that process work. It was, again, it was very organic, there was a lot of entrepreneurialism, that became like a think tank. And then from those Think Tank conversations, then this, the center directors would go out and try to implement the same iterate and iteration of what was being done by another center or some variation that better serve their community, because we have such a diverse population that we’re serving concurrent with that work that I saw the centers do, I was able to participate it with the Emergency Operations Center on daily calls to talk about how are things going and what what the needs are out in the community. And through those conversations that I gained access to because of the Florida Independent Living Council, which is not another Association, it’s a state, there’s actually a federally established Council, that they represent the Independent Living network, and they’re responsible for the state Independent Living plan. But we worked very closely together. And through their connection with the Emergency Operations Center, I was able to have a seat at that table, and to listen to the conversations and then brainstorm about solutions. And one of the things that came out of that that was so exciting was feeding Florida has affiliates, like the centers all around the state that provide support to food banks. And so people with disabilities who were isolating at home had had trouble accessing food banks or getting food. And so we were able to connect the feeding Florida affiliates with the Centers for Independent Living, and they each developed relationships where the centers could receive food that and then they can make that food available to the people in the community. And this was critically important at a time when a lot of people lost their employment. A lot of people are reemployed now, but a lot of people had lost their employment, their income, they were isolated. And it was really, it was frightening. And I don’t know that we’ll ever fully know the extent of food insecurity that happened in that moment because it was temporary, and no one was really tracking it. But I think it was pretty, pretty frightening. So the centers were able to play a huge role in that because of our involvement at the Emergency Operations Center. We also were able to bring in the Home Health Care Association of Florida to see if they could help with people who needed Personal Care Assistance because there were bcaas, which is the acronym for personal care assistance or either Coming down with COVID, or afraid to go to people’s homes because they didn’t want to infect their families, or people who relied on personal care assistants were afraid to have someone come into their home. So there was there was another whole sort of micro problem happening under the surface of most people’s radar that we were able to become aware of through our connection with the EEOC. And then are we you know, I literally called the executive director of the homecare association of Florida and said, Can you get on these calls, we need to talk and see how we can work together. And they were more than willing to work together with the Centers for Independent Living. And we did the same thing with the State Agency for Health Care administration, making her aware of what our needs were, it was regard to making sure that managed care plans were doing everything that they can for the people that they in their members, who would be people, you know, receiving Medicaid services, and making sure that they, their social and emotional needs were being met, in addition to their health care needs. Because that was that’s another huge piece, it’s, it’s, those are determinants of health. But they’re often neglected, because they don’t show up on your medical record, but they can drive what’s on your medical record. So that was, um, it was really cool to see all of that evolve. festal created a resource page on our website, where we try to consolidate all the information on in various areas, because there was so much coming out all at once. And a lot of it was changing, because definitely the federal government was building that plane while they flew it. And deadlines change regularly that the small business association rules on the payroll Protection Program, and also the economic injury disaster loan program, there’s all kinds of financial assistance coming out, but the rules and regulations around them evolved. So trying to keep all that updated was hard. So we tried to put it all in one place. Yeah, that was, um, it was a really frenetic time. But when I look back on it, my memories are very positive. Because of what I watched the center’s do, they definitely rose to the occasion, they recreated themselves, they know they grew and developed. In some cases, they were able to establish connections with people that they hadn’t had before, because things could be done virtually. And so people didn’t have to come to the center. And they didn’t have to go to someone’s home. But we could, we could be invited into one another’s lives more easily and more frequently, which I think has been a real positive.

Tony Delisle  42:20

Jane, you have great summary there. And yes, you’re saying that I relate to many of what you’re saying keeping our staff and consumer safe checking in on the ones that we know about. And growing that out. I think what you talked about participating at the state’s emergency operation center when it was activated from the pandemic and going there every day and getting updates from the State Department emergency management and all the other affiliates that work with them. Having a voice at the table being able to communicate some of the needs and provide technical assistance really did open up the door for us and I know a good amount of the other centers providing a service we’ve never done before which is home based delivery of essential resources like you mentioned feeding Florida really opened the door for us to work with our local food banks to acquire and and then once we acquired the food we can you know get the food out to people food security is huge and the economic impact is still with us it’s getting you know much worse in many ways the longer it goes on. And so we’re finding that we’ve carved a lane out and meeting the access and functional needs of people with disabilities who are food insecure but can’t get out to local food distributions or even access food themselves from work it’s just really good opportunity for us to get even beyond food other essential resources out to people and your participation up there along with the Florida Independent Living council another piece of the Independent Living network participation up there really helped to for our senator many other senators to provide a service that we’ve never done before and like you said now we’re providing in innovative ways that we never were I don’t know if we’d be doing this podcast right now if we weren’t putting in this situation to try and you know look at different platforms of talking to people and creating communities and connection so I’m glad that you’re seeing that I think one of the biggest benefits of facile Is that what you pointed towards and when we came together and shared information what are you doing or here’s what’s working for us this is what I learned this is that sharing happened at the director level but it was happening more than I’ve ever seen at the direct service care provider levels Independent Living skill, you know, instructors were talking to each other people that provide depth services were talking to each other their associate managers were program managers were talking to each other information referral folks were talking to each other and getting together and really swapping out ideas I hope this continues there was already you know, some some some of that going on to begin with. But I just hope this force amplifies that collaboration. Because that’s where I really find the benefit of facile is really the interpersonal sharing of information and an experiences that we can really borrow and and and improve upon or modify to bring back to our own place. So I really I really have appreciated that part of going through a crisis.

Jane Johnson  45:05

I hope it continues, I just want to say cuz to echo what you said, you know that book, Bowling Alone by Robert Putnam was so interesting, I read it probably 10 or so years ago, but it’s, he talks about how we are essentially tribal people. And we need connection. And we need groups where we can come together around something besides ourselves. And I think that that is, especially in a pandemic, everyone needs at every level within the the hierarchy of a CIL or any organization. But the groups that have been able to that sort of these little, there’s these ecosystems that have been created, and we’re all better nourished, mentally, and physically, as a result, I think because we have, we can, we can talk to other people who do the same job in another part of the state and probably have the same frustrations, or have solved the same problems. And it’s very affirming, it’s very, very healthy, to have that connection. And because of the pandemic and being forced to move virtual, we’ve been able to connect people on a level that we haven’t been able to do before. And I do think that working in working in a center for end to end living is not an ideal state, it’s not Camelot, it’s hard because you’re confronted with really difficult problems and difficult questions, you can get frustrated easily because you’ve got a lot of times we’re working against a system that doesn’t move easily. So having people that you can share those those frustrations with and kind of talk to and get reinforcement from is really important to staying motivated. And, and staying on top of your game. So you continue to take a positive attitude. When when challenges jump in your lap, as they will always.

Tony Delisle  47:11

Yeah, yeah. And then that connection fills my bucket and really does help us to endure to these challenges and make us better for it. And so relying on each other, again, unity through disability, and we can come together and be with each other as we go through that is so key and needed. And I say this to really kind of get a little serious in our conversation here. Today is January 7, 2021. Yesterday was January 6, 2021, a day in which in Washington DC they were aiming to certify the election, and something very historic happened in which the capital is broached. And, and there’s been a lot of fallout due to that. And and I’m not here to have a conversation about the specifics in that situation. But I do think it does point to the division and the type of communication and discourse that is very prevalent in our politicking right now. And so someone like ujjain, who is constantly meeting with legislators, staffers, and other department officials, and you are swimming in the ocean of politics, and are very well versed in type the type of discourse and nature of the conversations that are happening nowadays, which seem to be very reactive and offensive and finding the other and all these other forces are in play. So in this environment, what what are you what are you finding to be important in terms of how to navigate the type of political environment that we’re in, to still try and get the work done that’s needed to get done in order to improve the lives of people with disabilities? Like so how do we navigate these waters, from a perspective of, you know, moving in advancing important conversations around the policies that are impacting people with disabilities?

Jane Johnson  49:12

You know, I think what we are learning over the, with the events of yesterday, and the events leading up to yesterday are that there, there’s truth and there’s opinions. And we’ve mixed, we’ve melded the two. And we’ve started to think that someone’s opinion is truth when it’s just an opinion. So I think that keeping that in mind, it’s really important to focus on universal truths. And disability is a universal truth. We will always have disability, it’ll never go away. It’s always been there. It’s in the Bible. It’s, it’s in the future. Disability is part of life. And it’s it’s a shared part of life and I kind of like what I talked about earlier about getting making it personal. For our work, our North Star, the focus of our company should be on the reason why we’re here. And that is to to celebrate, and to support people with disabilities and to identify barriers to independence and to create more opportunities for people to live independently or more independently. So I think as long as that focus, as long as I maintain that focus, I am not Republican, I am not Democrat, I am not liberal, I am not conservative. I don’t have I don’t, I don’t, I don’t want to. I’m swimming in the sea of politics, but I want to keep my head above the water and focused on you know, the land I’m suing to, and not get caught up with all this the, you know, the stuff around me that could freak me out, like the plankton and sharks and this and that, just focusing, focusing on on the destination, because that’s why I’m here. And I think, but and ironically, I think everyone around me in the water also wants to get there, but they forgot why because they’re looking at all this other stuff. So I think just rising above the noise. Sometimes, you know, if you refuse to engage in the opinions in the politics, some some people will be offended, a lot of people are relieved. Okay, so you’re not going to talk about that. You just want to know about this. Okay, I can talk about this. It’s not, it’s not divisive. People have made disability issues divisive, but they shouldn’t be they’re really not. I think that’s more the result of an in artful discussions or, you know, conversations that maybe got too passionate, but really, there’s nothing. There’s nothing divisive about disability, it’s, it’s when you humanize it, and you and you use plain language, use inside voices to explain, you know, what the problem is, and where you need where, where things need to change, there’s nothing divisive, it’s, as far as I’m concerned, it’s, it’s as plain as say, like I said earlier, it’s like drinking water, why wouldn’t you want this for other people. So I think if we can just remember those things, and not get caught up in the noise, I think we’ll be okay. And in some cases will be, I don’t mind talking to those people, because and this was another advocacy point I forgot to make. But don’t come with a problem. If you don’t have a solution. Don’t just show up and tell people what they’re doing wrong, or why the system is broken, or why you need more money for this or that. That’s everybody does that.

Tony Delisle  52:17

And it’s just complaining. It’s just complaining.

Jane Johnson  52:20

Yes, it, it gets tiresome, and people will set you off, you’ll be talking and they won’t be hearing anything, it’s just right over their head. Because there’s, you know, human tolerance is only so, so big, and people just, they shut down. Because if there’s a problem that seems so complicated and big, and there’s no solution, they they’re gonna move on and have a doughnut. So anyway, but so I think that that’s that’s the important thing to be be the adults in the room. Focus on that universal truth that disability is a universal part of life, and come to the table with identify the issue but but have a solution that’s just as just as strong as the problem, you know, just as well articulated as the problem. And you may not know the entire solution, but you can make recommendations because, you know, invariably, what you think is a solution may not work because of the way things are so complicated. When it comes to state and federal programs that you can probably get to where you’re going, you might not be able to go exactly the route you’re proposing. The opt ins still comply with federal and state guidelines, but you can probably get there, or at least partially get there. But I’m going to take your your swimming, net one step for one, a few more strokes further, play the long game, but don’t be but don’t be unwilling to stop and make short gains. So if you have to stop on an island from and rest for a while, do that keep the shore in line, but but you know, you won’t get it all in one session, maybe won’t all happen at once. But you so you need to have a short game and a long game. And that’s where sort of visioning comes into play. I think that’s how the Rehab Act was passed. I don’t think we know it didn’t, didn’t happen overnight. It took a longer it took a lot of advocacy, the advocacy, that approach that worked in the 70s probably wouldn’t work today, because so much progress has been made that that you you don’t have the same disparities and discrepancies that you did. And you also you it was happening in an age where protests were pretty common. So it was it was part of a whole lot of cultural a cultural environment that was different than where we are today. So but um, so yeah, no, I would just say got to be relevant. And and remember that disability is universal and it’s it’s not a political issue. It’s it’s super it’s, it’s supersedes politics, and it’s in applies to affect everyone and if it isn’t affecting you today, well when you’re when you’re 80, and you need a walker.

Tony Delisle  54:57

That’s right. Oh yeah, and So what what I hear you saying is that what’s needed in this current political environment is clarity, like you mentioned, the North Star, you know, to compass to tell us where we’re going. And clarity often is said to be a superpower. And, you know, to get clear on what that is, and what our values are, and, you know, also said unity, you know, I really appreciate that you’re really tying in disability impacts everybody, this is something where it’s not political, where you can come together and help one another. And with your island analogy, I heard patience, patience. You know, that that’s a tough one there, because the urgency of now, but it is, seems to be a universal truth, that things that are worthwhile take time, and they have the endurance, I know you’re an endurance athlete, like to have the endurance to keep in, persist and persevere, takes patience, and then that value of patience is also critical. And so I really think that if we can take to heart those values you just highlighted there, along with what you were saying earlier in the interview with just recognizing the humanity in the other person, even if it’s the other person that and this is just me speaking, that is, you know, maybe not thinking of the same, you know, perspectives as you are, maybe they’re actively trying to offend me, you know, maybe they’re, you know, trying to act, you know, this the kind of discourse that we have now, how can I have patience for that person? How can I have empathy for that person, how can I maybe, you know, get out of my own head in my own, you know, reactiveness, and all these other things and have compassion, I feel like, we need that more than ever. And I feel like, that’s a very hard thing to do. Like, that’s almost a higher level thing to do. It’s definitely for me, you know, something I’m trying to put into practice. But you know, just at the end of the day, recognizing that we have more in common than we knew different, and not getting distracted by this plankton that’s around us that we can look to divide us and become so tribalistic and that sense, so I seek to be, you know, somebody that really does not traffic and trying to offend people and anger people and really come at it, you know, with a way of agreeable that we can disagree and have civil discourse, and have the ability to let go of my own perspective and see life from another perspective, and then revisit my own and see if that’s changed at all, it’s hard to do when I’m angry at somebody, or offended by them. And that is a choice. You know, having an opinion about that is kind of where a lot of things can maybe go awry, you know, things aren’t good or bad, but thinking makes it so and so, a lot of the things are indifferent, and we, you know, apply our opinions to it, and things can go awry that way. So we’re gonna, you know, start coming in on the end of closing questions here. I got two of them for you. One of them is, what is your vision? You know, if you were gonna, you know, project out just a little bit here, for what you the impact you want to have, as the director for the facile. What is your vision of the influence the results of your involvement with this organization for people with disabilities?

Jane Johnson  58:15

I really, really want to do everything I can to create to increase the stature of Center for Independent Living in Florida, I want every legislator to know what a Center for Independent Living is, and what they do, I want centers to be seen as the assets that they are. And I want to do what I can to open the door to new opportunities for centers to serve more people to do more to have the resources to expand their footprints. Really, I just, it’s all about growth. But I think the stature piece of it has to happen also so that people see the value. And I think that Centers for Independent Living are modest to a fault, they have a value proposition, they can make an offer to the community to, to local government to state government, and but they’re not very good at patting themselves on the back and selling selling themselves. And so I feel like I can unapologetically be that spokesperson for the sales there and talk about them proudly and brag about the things that they do, and, and how they change their communities. And, you know, ask the question, What would your what would your community look like without a Center for Independent Living, and then kind of tell them what this is what would happen if all these people weren’t getting the services or hadn’t gotten those services, this is where they’d be living. This is how they’d be living this is how much more it would cost. So so I think that to me, is my my vision is that I hope that when I’m no longer with fasil, that I can look back and say that we are a better organization. Now and the scale and the Center for Independent Living, have been able to achieve their potential because it’s only for lack of resources and opportunity. It’s not that they lack the ability. It’s just there. They haven’t been given. You know, they’re they have a fixed amount of money and they have to serve an unfixed population. regular basis and regularly we see we know that needs are going unmet because we just we don’t have the we don’t have the resources. But also there’s opportunities. Are there programs were still should be made major players, we’re not now and I’d like to see them become major players?

Tony Delisle  1:00:18

Well, I think we’re on our way and many effort levels because of your involvement with it. I want to acknowledge you before I ask my last question. Because of you, first of all your knowledge of how the system legislatively works, the skills you have in communicating with people influencing people, the ability to build and sustain relationships, which is so important in this area, your ability to think creatively, your emotional intelligence and agility, your ability to work with 15 directors who are used to being in charge and having their way and, you know, being able to, like, I just have this ability that you have to do the job that you do is quite stunning. And and I and I’ve taken notes, and I’m learning a lot from you, you have a lot to offer, not just our membership, but all people who we touch as well. And I look forward to continuing conversations with you that we all can learn more about civics, how to advocate how to be better, what are the issues, how we can come up with solutions, like you said, you know, identifying the problems, after a while if we don’t have solutions is just complaining, you know, there’s no training needed to be a critic. But there is a lot of training needed to be someone that really has the skills and commitment to implement the solutions needed to those problems that were criticizing. So I commend you for being all those things and more Jane.

Jane Johnson  1:01:45

Tony, my work is inspired by the people I work for. So I’ll just say that, that I see the centers, the directors in the work that they do, and the commitment and the frustration they have because they just want to do more, which is really exciting. To me, that’s theirs, this is not a complacent group. So anyway, so you are way too complimentary, because really, I’m only as good as the people I represent.

Tony Delisle  1:02:07

Well, that speaks to your humility, and another great asset and value you bring to the table. And I also like how you pointed toward this is the infinite game, as Simon Sinek would say, there is no finish line to the work that we’re doing here. We’re all going to be standing on shoulders, and other people will be standing on our shoulders. So our last question Jane, we ask everybody is this question is to you, Jane, what is the independent life?

Jane Johnson  1:02:36

The independent life is being able to dream of a future and then having the opportunity to pursue that dream, whether you get to the dream or not, but knowing that you have an opportunity to try to pursue a dream, because whether that means going to school and and training to become a neurosurgeon, or if if it means being able to see your family, I just, I don’t know, it doesn’t matter how big or how small, but I think that when you are independent, that means you’re given the opportunity to have a dream, and the chance to pursue it. Because I do I do know that there are people who live in institutions, or who are in settings where life is so stressful that they end so limited that they can’t dream and they certainly can’t try to pursue a dream. So to me, that’s that’s the goal for for all people of all, regardless of ability, but just being able to have a dream and have the opportunity to try to achieve it, whether whether it’s you’re successful or not.

Tony Delisle  1:03:45

That’s beautiful Jane, and I really appreciate how whether you’re successful or not points to the process of working towards our dream. And then the way that is the end, not the means to the end it really we got to enjoy trying to live to that ideal, whatever that is for us to live independently. And in that process, fall in love with the process of again, there may not ever be a finish line. So Jane, I really appreciate spending time with you and having this conversation. I look forward to many more to come and continued. wish you well health and all the efforts that you do on behalf of our association and on behalf of people with disabilities and just the behalf of all people everywhere. So Jane, thank you very much.

Jane Johnson  1:04:31

Thank you, Tony. Yes, this has been wonderful. I just really appreciate it. Have a great day.

Tony Delisle  1:04:35

Take care, onward and upward. Hello everyone. And this is Tony coming to you to let you know about a new weekly addition to our Independent Life podcast. We’re going to have weekly episodes that catch us up on what is going on in our Capitol related to the legislature the policies, the laws, the issue That impact people with disabilities. We are going to be brought this information to you by Jane Johnson, the executive director for the Florida Association for Centers for Independent Living. She is going to tell us what is going on today what to look forward tomorrow. And along the way she’s going to talk about some civics, some one on one some things that we should know about how the process works, because this is very important in terms of us being advocates. advocacy is one of the core services that Centers for Independent Living provide. Self Advocacy, and systemic advocacy are two parts of what it means to advocate and each of which are very important in terms of the legislative process. When we will look at the history of the independent living movement. It is filled and continues to be filled with advocates supporting the laws policies, and civil rights for people with disabilities. This history has led to the 1973 Rehabilitation Act where Centers for Independent Living are funded from this has led to the Individuals with Disabilities Education Act, which supports accommodations and other provisions for people in education, the Fair Housing Act, fair labor laws, there’s so many different types of policies and laws that are on the books today, because of people with disabilities who advocated for them. So this will be a space where we get to learn more about what’s relevant what’s going on in the Capitol. We’re going to learn more about the process. And through this, we’re going to be informed to a point where we can push forward onward and upward to advocate for the issues that are near and dear to our heart. So we look forward to having you along and keeping our ear to the ground or what’s going on with the decision makers in our Capitol as it pertains to people with disabilities live in the independent life.