From 12 Leaders to 500 Members: An Association Growth Strategy

[music] Welcome back everybody. I've been waiting for this episode for quite a while. We have on Lori Sheila Yuna uh with us today. She is an executive director of a trade association that deals with autism and the nonprofits, so many nonprofits that serve in this environment. So, this is going to be a great show. Lori, welcome. >> Thank you so much, Julia. You know, it's a fascinating take on what everybody's doing. And we were talking in the green room. We've done more than 1600 episodes. We've had very few people in your leadership type of position to talk about how to bring nonprofits together from this like trade association concept. So, I am really excited to to learn what favors and fishnetss and facts and how they all work together and in flow. You know, we have a lot of flow each and every day on the nonprofit show because we have amazing partners. They include Bloomerang, American Nonprofit Academy, Staffing Boutique, JMT Consulting, Third Sector Company, your part-time controller, and Martis. These are the folks that stand with us day in and day out. I'm Julia C. Patrick, CEO of the American Nonprofit Academy. And again, Lori Sheiley Eunum. I pronounced that right. >> You did. Well done. Woo. Uh Lori is the CEO of CASP, the Council of Autism Service Providers. They have they're just celebrating their 10th year of anniversary. Um what a lot of things I would say, Lori, have changed in the environment of of autism in 10 years. So, not only it seems to me, are you dealing with a new trade association, you're dealing with a topic that's in flux. Is is that fair to say? >> Absolutely. Every day is different. Every month is different. And that's a good thing. We're learning more and more about autism. The research is improving. Treatments are improving. So, it's a lot to keep up with, but I I'm I'm happy to steer this organization through a time of great change. >> Yeah, it's really exciting. And I think um no matter what you do in the nonprofit sector, you can watch this episode and really apply it to your sector, your your niche uh because it's such a fascinating way to think about organizing different people serving in the same direction across the country. So let's get into this and let's have you share with us. I like to call it your origin story, but like what your mission is and how this kind of you know has has coalesed to where you are today. >> Sure. The Council of Autism Service Providers or CASP sort of had two beginnings if you will. We started as just a conference about 20 years ago, but we weren't an association. There was no official incorporation, no official organization. It was just a handful of executives from autism provider organizations who said, you know, we should get together yearly and share stories, discuss strategies, talk about how we can do a better job serving people with autism. So it started with literally like a dozen people just getting together annually and then that dozen grew to a couple dozen and more dozens. And then around 2015 the people who were coming to that conference, the executives who were coming to that conference said, you know, we really ought to make it official. We ought to incorporate. We ought to become an association and be open to as many provider organizations as want to get together and share strategies. So, the Council on Autism Services Conference became the Council of Autism Service Providers Nonprofit Association officially in 2016 and adopted as its mission to support its members by cultivating, advocating for, and sharing best practices in autism services. So it was this like predominantly born in a regional from a regional part of the country or a certain type of provider or was it just like a whole bunch of different folks trying to share? >> Yeah, it's a great question. It wasn't really regional because we had founding members from the northeast and we had founding members from uh California and kind of everywhere in between. uh these are people who kind of knew each other from other conferences. So right they they would be at other conferences or other ABA conferences. Applied behavior analysis was kind of the common intervention type thread. So they knew each other and it's interesting they they would say you know the best part about that conference is when we all sat down in the bar together and just talked. Right. So, right. So, so the thought was let's pull together a conference that is us just sitting together and talking. >> Um, and so that's that's really it really is meant for the executives who run those organizations to figure out how they can do it in a more sustainable way and deliver higher quality services. About how many members do you have? >> Just about 500. And oh my gosh, if you if you had asked me like how many members do you think we have, I'd be like kindly wishing you had a hundred 500. >> That's amazing. >> And and only organizations can join. Individuals cannot join the organization. >> So um so yeah, I mean we we have really grown quite organically. >> Yeah. >> As autism, I mean you said it at the outset, right? you hear about autism all the time. There's so much um new information coming out all the time about autism. And so um we I'll have to say I don't think I've done a very good job trying to recruit new members because I'm too busy um to think about it and we just grow organically. We really focus I know you told me that a lot of your interviews are 501c3s and we're a 501c6 but we're kind of C3ish in mentality I have to say. So, we focus on what can we do to make things better for our members so that they're delivering better services to individuals with autism. And so, instead of thinking about how can we grow our membership, we think constantly about how can we do a better job for our members. And guess what? That grows membership. >> Yeah. It's absolutely riveting. my saintly sister Jamie Patrick I mentioned in the green room. She is a tremendous educator and has dedicated her life um and her professional career towards working with with her students with autism in a public school district um here where we live in Arizona. And um we were just talking about in the trajectory of her career how much the science, the technology, the theories, everything have changed. And um I've got to believe a group like yours really helps kind of everybody to understand what are some of the new things going on um so that you can advocate properly. Is that fair to say that you have to be running on that hamster wheel of change just as fast as everyone else? >> Absolutely, if not faster. Right. Because we've got to disseminate the information for our members and for the families. So >> the the litmus test to become a member of CASP for an organization to be admitted to membership is that they have to demonstrate a commitment to evidence-based care. And so if an organization is utilizing some intervention that um has been disproven, we will not admit them to membership and we do in fact have to turn applicants away on that basis. So now now what is evidence-based changes over time, right? >> So that's why we have to stay on the cutting edge of that. But we are quite strict in ensuring that our organizations are committed to evidence-based care. >> So you're really in a in a whirlwind of thought of theory of science and practice discovery and yet you're so you're so young. You're such a young organization. Um how do you keep all those those balls in the air? I mean, I've got to believe that because everything's changing so quickly, it's got to be hard to just focus in and managing, you know, the practice of of association management, which is a a unique thing. It's a very very unique skill and operational structure within the 501, you know, uh the C structure. It is. And you know, I came from a background of advocacy. I I'm a lawyer by training and I practiced law with the United States Department of Justice when I was young. Then I went into teaching law school for a while at two different law schools and during that time my firstborn child was diagnosed with autism. So that is what led me into this professional path. It is a completely new thing for me to for my job to be running and managing an association. >> But you know the how do you do it? Um I I would say a couple of things. One um I'm incredibly passionate about the subject matter and about what our members do because it's impacted me personally. my my child um has benefited tremendously from um quality evidence-based intervention for autism. And so I care very much I I care very much about our mission and the the families that we serve. And then also because of our growth, we have been privileged to grow from one staff member myself seven years ago. Uh there there was a a a former executive director before me for three years and it was just her. Um and then when I was hired it was just me and now we have 25 full-time staff. So, uh, we can better keep up with the advances in autism and better serve our members because we have one person focused on government affairs and another person focused on clinical standards and another person focused on educa educating and um, creating resources for our members etc. Wow, this is remarkable. Um because I think of those lost years of CO um and that you've been able to do this during a slowdown where especially your population had such um your your service providers worlds were turned upside down because in a lot of cases they couldn't get out or work with clients, right? I mean, you know, they couldn't have their schools. If they were running a school, they couldn't have their school in session. I mean, all these different things. Um, it's remarkable that you have been able to be on this trajectory through in just a short period of time. I just keep going coming back to that. >> Well, it's very insightful of you to bring up COVID. Interestingly, I think the pandemic allowed CASP to shine and demonstrate value to our members more so than we would have been able to otherwise because the early days of the pandemic, uh, all these rules and regulations were issued that you you can't be out on the street, you've got to close down this, you got to close down that unless you're an essential health worker. Well, my members said, not my members, cast members said, "Are we essential health workers? We're not sure." And so I reached out to my legal friends, you know, I I hired a lawyer to say, "Give us a memo. I want to know, can we qualify as essential workers so that we continue serving the the children that we serve?" And um so being able to produce a a legal memorandum in very short order was of immense value to our members. The kind of thing that they couldn't have done on their own and it was uniform nationwide because we disseminated nationwide. >> That's fascinating. And I love that you could take your background and put it into action very quickly and solve uh some phenomenal problems and stop those discussions like okay we are we're we are part of this journey and so we got to keep working right leaning in. Brilliant brilliant brilliant that's super super cool. So now you've like moved through, you're thriving, um you're getting more and more outreach, you're doing all sorts of amazing things, you've built a significantly sized team. Let's be real about the the world of autism and only because I see this with my sister and my dear friend Danny Openend who is the CEO of SARKC which is um a autism Southwest autism research and resource center here in the valley. Um there are a lot of theories, there are a lot of practices, there are a lot of populations. Are you dealing with children, babies, seniors, adults? I mean, how do you keep this umbrella up over so many different people with different ideas? Because again, all this changed, but yet you have different opinions on things. CASP is a big tent and we welcome all sorts of providers, all kinds of models again as long as they're committed to evidence-based care. We um serve multiple populations. We serve infants, toddlers, children throughout um the the early childhood years and the middle and elder childhood years. We serve adults. We have providers who are delivering ABA therapy uh to children with autism. We have providers who are providing 247 residential care to adults and seniors with autism. We have providers who are delivering day services to adults who um don't work or maybe have nowhere to go during the day. So, we really run the gamut and we want to be that way. We want to think we want to acknowledge autism as a lifespan issue and serve the full range with the the full paniply of provider types that a person with autism might need to interact with over their life over their lifetime. It's really a I love your phrase uh lifetime of services because what a family needs in the beginning when they've just received a diagnosis to as their their child ages and goes through the different phases of life. Um wow, that's an awesome and heavy lift. It's not going to be the same organization that you start with probably, right? I mean, you're g you're going to have to go out and find other folks to work with. Well, it depends. Sometimes um you have organizations who just work with children with autism from birth to six or birth to eight or birth to 18 other and then you have other providers who just do adult services. But then you al we have many members who do serve the full range and that's one of my personal goals is to get more of our members to serve the entire lifespan. Um because once you get to know children with autism are so relationship dependent. Um and so for for my own son, he has been able to stay with the same provider. He's now 25 years old and he's with the same provider that he was with in elementary school. And I treasure that because they know him so well. They know his whole history and he knows them. Um trusting relationship. So I it's it's my goal to see more lifespan type services. >> That's fascinating and I I applaud you for that. Um you know we don't have a lot of time left but I I've been so enchanted by your story and the work that you're doing. Um, I want to talk to you a little bit on the personal side, like leading an organization, a national organization with a lot of different voices, as we were just talking about, um, and something that's in the news a lot. How do you keep your passion up and imbue your leadership with that? Um, because that's got to be a heavy lift. I gotta say I am blessed with board members. A CASP has 13 board members who are so committed, so passionate about the work. It is not a one of those board service things that's just a resume builder and you just kind of do it. >> It's not that at all. They are they are so engaged and they and they they work on projects and really lead us forward. and and likewise with our staff. We just have been blessed with people who want to do this more than anything else and are so grateful for the opportunity. So, um you know it for for many of us it is personal. Uh many of us have family members impacted by autism and we've seen the difference that quality intervention makes. So, we're dedicated to ensuring that future generations have access to that care. Yeah, you know, there's I always have said in the trajectory of my work in philanthropy um never get in between a a mother and her child. The organizations that I look at across this nation that have been founded or led by women that have moved into this space not of their own choosing but because they had a child. The power of those mothers is just astonishing and the journey that they take. Um, generally people that were not educated whatsoever in navigating the nonprofit sector, right? you know, and yet they like you, an attorney, and then all of a sudden you move into something um that uses your legal mind and your legal framework, undoubtedly, but you didn't go to school for this. You didn't go to school for nonprofit management, right? >> You're so right. And I I recall um CASP actually sort of recruited me to the CEO role. And when I interviewed with them and they offered me the job, I said, You know, I'm thinking about this, but let me just be clear. I'm not a provider, and you're asking me to run a provider association. >> Yeah. >> And I don't know how to run an association, but if you still want me, I'll take it. So, it's um I think they just saw through those two pieces and said, "Well, we actually like the idea of a parent running a provider organization because we know that you really don't care about anything other than what we should care about, the mission and serving the individuals with autism." And they're right about that. >> And uh you know, I think they just said, "You'll you'll figure out how to run the association." >> [laughter] >> So, I'm I'm [clears throat] building the plane as I fly it, I guess. But we're we're doing well. And >> and as I said, I came, you know, people are probably wondering about the title of this session, which is favors, fishnetss, and facts. I I came from an advocacy background. As I said, when my child was diagnosed with autism, there was no health insurance coverage for the type of therapy that the doctors recommended for him. And so, um, like you said, don't get between a mom and her child. We paid privately for his therapy for a few years, but it was $70,000 a year. My my son is very severely impaired. And so after a few years of that, I it's a long story, but the short version is I I sat down and wrote legislation in my home state of South Carolina to require health insurers to cover evidence-based therapy for kids with autism. And we um I I also didn't know anything about passing legislation, but we came up with a strategy called favors, fishnetss, and facts. And it all started with um just reaching having families reach out to their legislators and asking for a favor and saying, you know, it I would really appreciate it if you would support this bill. It impacts my family. Can you just do that as a favor to me? And you can't believe how many sponsors of the bill, supporters we got just by asking for favors. And then uh the fishnetss part. I I had a mom friend of mine working with me at the state capital and one day she showed up in fishnetss at the state house and I thought, "Oh gosh, I'm going to have to tell her that's appropriate." But you know what? I decided not to tell her. I decided >> she's a citizen. She can show up however she wants to. And that turned out to be a very good decision because she got into a lot of door got into a lot of office that way. Um and then at the end, you know, we we we did have the facts on our side and we shared the facts with the legislators before getting um approval of of the legislation. So that's the little advocacy u piece of it. And the the slogan favors fishnetss facts is what got us here. >> I love it. I'm so impressed and I'm so delighted that you know your tribe found you and the tribe is flourishing and really expanding um as a unit. so many nonprofit sectors um could really learn from your message and from your journey because um as you see this every day I'm sure you you have members they work so damn hard with such integrity with so few resources and if they just got that leg up from that trade association um got you know leadership what a difference it can make and obviously we're stronger together right I mean um a small voice in the south matched with somebody in the Midwest with the Northeast, you know, I mean, goes on and on and on. That really becomes powerful. Super cool to be talking with you today. Okay, so you're celebrating your 10th year and what's up for the next 10 years? Like what are you thinking about or seeing as is that future looking like? Well, your timing in asking that question is absolutely perfect because we're going into strategic planning one week from today. Our board gathering uh on on the West Coast and spending several days in strategic planning and I think one of the things we want to do is strengthen and increase our advocacy presence. Right now, we have full-time uh we have lobbying presence in Washington DC at the federal level, but so many of our issues, whether they be health insurance or Medicaid or education or even residential care, are really regulated at the state level. And so, we'd love to grow our lobbying presence to make sure that our voice is being heard effectively um in every state capital. Um, we're working really hard to establish outcome measures and to benchmark for our members so that it, you know, it can be hard for payers, whether they're insurance companies or Medicaid or school districts, to know what success is in autism. We know that ABA therapy is incredibly effective in uh individuals with autism, but what exactly does success mean? and who has achieved good outcomes and who has not. That's something that our field has not fully grappled with yet. And so that's on our agenda for the coming years. >> Wow. That's a heavy lift, but that ultimately will be the best investment that you can make in your organization in terms of that advocacy. Um, wow. Congratulations. I have really enjoyed this. I'm I'm so grateful that my neighbor Dr. Danny Open [laughter] would recommend us. Um I I think he uh told me about you months ago and he's like you've got to get her on the nonprofit show. And um yeah, so it's really great to learn about what you're doing. And again, I think other nonprofit sectors could really uh glean a lot of information from your your approaches and what you're doing. So, thank you so much for sharing your time with us. >> Thank you so much for giving us the exposure and I enjoyed talking to you and learning about what you do as well. And shout out to Danny. Thank you for >> Danny Openen. Like I said, he's my neighbor and he's a great guy. Well, we are just so thrilled that we've been able to get Lori uh Sheileley Unun on. She is the CEO extraordinaire of CASP, the Council of Autism Service Providers. And you can learn more about the organization at casp r o i v ds.org. They're celebrating their 10th anniversary and they'll walk you through on the website about what they do, where they're spending their energy and their efforts. It's fascinating to watch the trajectory of their growth and uh really to to be a part of something like this is magical and so very needed. Um we have been so blessed over the last seven years uh to have amazing partners. Most of these folks have been with us since we started day one. They include Bloomerang American Nonprofit Academy, Staffing Boutique, JMT Consulting, Third Sector Company, your part-time controller, and Martis, our newest sponsor that's joining us. Um we Lori, we end each episode with this mantra. And wow, it to when I say it today, it's really going to s mean something different to me. And it goes like this. To stay well so you can do well. [music]