Episode #100. Best practices in funding your aphasia program with Kathryn Shelley

Aphasia Access Conversations

I’m Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resource

I'm today's host for an episode that will feature Kathryn Shelley, former Aphasia Access President and co-founder and current Grant Director for the Aphasia Center of West Texas. Kathryn was our guest for episode #1 of the Aphasia Access Conversations Podcast and we are delighted and honored to invite her back to be the guest on this 100th episode of our Aphasia Conversations Podcast. We'll discuss financial sustainability of Life Participation programs across a variety of settings, with a focus on best practices for fundraising.

Guest bio

Kathryn Shelley has over 30 years’ experience in nonprofit management, board leadership, strategic planning, marketing, and fundraising. She is co-founder, prior Executive Director, Marketing & Development Director, and currently the Grants Director for the Aphasia Center of West Texas, one of the earliest community-based nonprofits in the U.S. to incorporate the Life Participation Approach to Aphasia. Prior to her father’s stroke in 2001 and his resulting aphasia, Kathryn was lead designer and co-owner of a marketing and graphic design firm in Austin Texas.

Listener Take-aways

In today’s episode you will:

• Hear how two events involving chocolate and rock and roll have grown awareness and funds.
• Find out how typical stages of organizational development might influence your fundraising capacity.
• Gain practical tips for sharing the impact of your aphasia program to help raise awareness and funding.
• Learn about some resources available for supporting your nonprofit know-how.

Show notes edited for conciseness and clarity

Ellen Bernstein-Ellis

So, Kathryn, I want to give you a shout out and just a great big welcome. It took 100 episodes, but thank you for coming back.

Kathryn Shelley

Thank you so much for having me, Ellen.

Ellen Bernstein-Ellis 01:24

Absolutely, I was glad to introduce you. You've done so much and have worn so many different hats, Kathryn, and I'm excited to get to have a discussion with you today. So again, welcome.

Kathryn Shelley 02:20

Thank you.

Ellen Bernstein-Ellis 02:21

We like to start off the episodes with a fun question. Can you share an Aphasia Access favorite resource?

Kathryn Shelley 02:33

Well, it's a hard pick, there are so many. But let me tell you about the one that I'm involved in right now - top of mind. It's an online certificate and badge course, E-badge course, called Person Centered care, Life Participation Approach to Aphasia series.

Aphasia Access just launched the first in that series called The Life Participation, Knowledge Course. It's so much more than a webinar. It's contemporary, and it’s how you interact with each of eight modules. You earn .25 CEUs, and at the end you receive a clickable E badge which takes anybody, an employer, your peers, if you have that in your email signature, to a site that shows everything that you did to earn that badge. It's so contemporary and so comprehensive, and it will give someone a foundational understanding of the Life Participation Approach. I'm loving working with Melinda Corwin and Nina Simmons-Mackie, and just the entire team of subject matter experts. The reviews are coming in from both professors teaching the next generation and current speech pathologists that it is really fantastic and very, very helpful.

Ellen Bernstein-Ellis 04:06

We can also point our listeners to Episode 92 to learn more about this course, because we actually interviewed Melinda and Brooke Hallowell. So that's another place they can go to learn more. Can you explain to the listeners how they can access the course?

Kathryn Shelley 04:27

On AphasiaAccess.org, you'll see the link on the homepage that will take you over to our new Academy, which is the platform where all of our interactive courses are. It's an easy sign up to be on that platform, and then you'll see the course right there.

Ellen Bernstein-Ellis 04:48

That's great. Thank you. I don't blame you for picking that today for a favorite. To celebrate this 100th episode, I was wondering, Kathryn, if I could ask you to share with our listeners the backstory to the start of this podcast. Just a little insider history.

Kathryn Shelley 05:07

Sure. Let's see. It was Nina Simmons-Mackie and I in a daydreaming conversation wondering how to reach busy professionals with a free product to connect them to the wealth of practical tips and information that is available through all the people that make up Aphasia Access. It was Nina who said, “How about a podcast, people wouldn't have to carve out work time, they can listen in a car, or on a walk, anytime.” And then we brainstormed who might entertain heading up this new endeavor and be the type of person others would say yes to. So Ellen, I was simply the one fortunate enough to pitch the idea to you. So it's really you and the amazing podcast team that made it happen and keep it going.

Ellen Bernstein-Ellis 06:01

Thank you. Those are very, very kind words, and very appreciated. I just have to give a shout out to my colleagues who have been part of this collaborative team along the way, the whole 100 episodes. Nidhi Mahendra, Katie Strong, Jerry Hoepner, Janet Patterson, and Alyssa Rome. They've all contributed to this podcast so much and they are a joy to work with. And of course, I have to thank Todd Von Deak, Jess Campbell and Lisa McCracken, of Aphasia Access, who make sure we have all the logistical support in place. And one more thank you, and that's to the 100 plus guests. Just thank you for sharing your stories and your incredible work with our listeners. You know, maybe one more thank you, and that's to the listeners, because we just so appreciate the support. Thank you for sharing the podcast with your colleagues and your students. We are excited to see it grow.

Kathryn Shelley 06:53

You told me that there's over 102,000 downloads that have been verified. So how cool is that?

Ellen Bernstein-Ellis 07:02

We've been amazed to see that it's being listened to in over 50 countries. We've just been really excited and honored to be part of this. So thank you. And again, I'm glad you're here today.

We didn't get a chance to describe your Aphasia Center very much when you were interviewed for episode one. You did share the why though, how your dad's own experience with aphasia was an important part of the story for starting the Aphasia Center at West Texas in Midland. You are a co-founder of that center and it's celebrating its 20th anniversary. That's a really special milestone. Maybe you could share a little bit about what your center looks like today.

Kathryn Shelley 07:45

Sure, we're in a standalone building. We have multiple groups three days a week. Conversation groups are the backbone. Additionally, we have raised bed gardening, cooking, computer lab, and woodworking. All the groups are ever changing through the years according to the interests of our members. We've had book clubs, singing, photography, art,. Until COVID, we had a very active out and about program, which got people out of the center going to field trips to local museums, nature preserve, restaurants. We're all so glad it's starting to ramp back up.

Ellen Bernstein-Ellis 08:25

Sounds like amazing programming. I just have to acknowledge the 20th. It's a special milestone and really something to celebrate and an opportunity to reflect.

Kathryn Shelley 08:35

Yes, it definitely is. And I'm really humbled and proud that 20 years later, that the spirit of the place, the spirit of the Aphasia Center looks and feels really as vibrant as it did during our startup years. I think that vibrancy remains so contagious, because we continue to serve our mission, which is to walk alongside aphasia survivors, who thought their life was basically over, then watch that depression evolve into hope and a pathway to embrace life again. So it really continues to be those real life stories that keep our staff, our volunteers and our investors so energized.

I think in terms of today's financial sustainability topic, at 20 years, that looks different than in the very beginning, because we have investors that have now been with us for decades. They've guided us through the stock market crash of 2008. And then when we outgrew our early meeting spaces, to launch a capital campaign and buy a building. There are people who have stepped up through COVID. So we've really grown into our mature stage of development and our reputation certainly helps us attract and sustain these long term relationships.

Ellen Bernstein-Ellis 10:05

Kathryn, your center works really hard at cultivating grant support and building a donor base. But I really want to share with the listeners some of the stellar annual events that are associated with your center. I certainly have been watching this infamous Chocolate Decadence event that you host prior to Valentine's Day each year. I'm really just in awe of your center's ability to create these events. Could you share some tips on how you build a successful team to take on something like this and how the members of your center are involved?

Kathryn Shelley 10:43

Sure. The first thing I would say is do not attempt this in year one. Events, special events, just take so much staff time and volunteer effort to put on. Chocolate Decadence started in our fourth year, when I would say we were entering our adolescent stage of development. Our donor base and our database was growing. We'd populated our board by then with people in media and marketing plus leaders in business and health care. Word was getting out in more and more spheres about us. Invitations to speak were on the wise, and that's when a generous woman with a long history of philanthropy and volunteer service presented her idea to our board. She came to us and to our board and said that she had just attended a chocolate themed fundraiser in another state, and that she thought it would do well in our region. And then, of course, everybody was over the moon at that idea.

And she said, if you're interested, I’ll chair the first year. She brought her own volunteers in the beginning, then it evolved from there with friends of friends, and it kept going. So at this point, Chocolate Decadence continues to be an elegant night, and it raises around 40% of our general operating funds. It is the gift that keeps on giving. Members do attend the event too. What's more life participation than that? One of the really dear things is that a family of one of our very loved founding board members who passed away knew what the center meant to their mother. That family underwrites the cost of the member tables as a way to honor their mother.

Ellen Bernstein-Ellis 12:42

That is fabulous. What a great way to bring the community together and have the stakeholders be part of a really important night. So that's great. And it sounds to me like you're saying these events just take quite a team, like you need a cadre of volunteers.

Kathryn Shelley 12:58

That's exactly right. We certainly have a large number of terrific volunteers who show up that night to help. One thing that I've seen really talked about in the volunteer world is that trends have changed over the last 20 years. And, of course, more after COVID. So there used to be a generation of community volunteers who made volunteering their job. And they served on lengthy committee tasks. They really took care of so many things about Chocolate Decadence. We've not seen a new generation that has that level of flexibility today. So I have to say Chocolate Decadence has streamlined by switching to a more full service venue and contracting out a lot of what volunteers handled before.

Ellen Bernstein-Ellis 13:53

Yeah, I think I've noticed that too. And some of the other organizations that I've been involved with have noted this kind of change in trends of how you have to utilize volunteers.

Kathryn Shelley 14:02

That's true. That's very true.

Ellen Bernstein-Ellis 14:05

Well, I know that Chocolate Decadence is just an amazing event. It has chocolate, so you're off to the races with that. But you also do a concert, could you share a little bit about what that looks like? So I think that's a summer gathering. Is that right?

Kathryn Shelley 14:21

That's right. And the Aphasia awareness concert is a different goal. Its main goal is awareness. So yes, it's an outdoor event with a fun tribute band. General Admission is free. So this year, you'll feel like you're witnessing Elton John in his early years.

Ellen Bernstein-Ellis 14:40

Oh, now that's great.

Kathryn Shelley 14:43

Yeah, so during the concert, we raise awareness about aphasia, how it impacts people, and that there's an Aphasia Center to help. The cost of the band is entirely underwritten by sponsors. And then because it's a free event, our television newspaper, and radio stations, trade or greatly reduce the cost of airtime for all the advertising. So it's a win-win as the media and a number of businesses want to have their names on the stage banners seen by that audience that night. It's usually a couple thousand people. Both of these events are just great ways for Aphasia Center members and families to get out of the house and participate. The fundraiser of Chocolate Decadence and the awareness raiser of the Concert are our two yearly events.

Ellen Bernstein-Ellis 15:37

Both of them build community in their own way.. That's fabulous.

Today I've been thinking about how we're going to talk about this. And whether you are a community based center, a university, or even a hospital program, sustainability has several pillars, and I am so glad that you kindly agreed today to address one of those pillars, specifically financial sustainability.

I'm particularly grateful for this chance to learn from your expertise, Kathryn, because most SLP training programs rarely offer instruction on program development and management. Yet, we are frequently motivated to launch programs to meet the needs of the community we serve, and we often learn as we go. But this lack of knowledge might be a barrier to someone wanting to start a program. You mentioned during our planning meeting that there's a fundraising framework that involves understanding the organizational development stages, and you've already started to sprinkle our conversation with those words. Could you explain those stages to the listeners?

Kathryn Shelley 16:44

Sure. So the typical stages, particularly in nonprofits, and I think they overlap to other settings, are often called infancy, or startup, adolescence and maturity. Most every organization or a program begins with a compelling story by someone who is smack in the middle of that story. So if we think about Jodi Morgan, who is a huge hearted speech pathologist in Jacksonville, Florida, she went to a crowdsourcing campaign populated with video clips of people with aphasia, answering what an aphasia center would mean to them, when they didn't have one to go to. Then, that led to starting the Brooks Aphasia Center. And of course, my own story is as a panicked daughter, who only saw a dismal life ahead for my father, and frankly, an overwhelming life for me. So the first thing I did was call around to get advice on who was one of our region's most respected SLPs. Over and over, I was given the name Beth Crawford. And so it was Beth and I on the original staff, and Beth remains the program director today.

Ellen Bernstein-Ellis 18:00

That's fabulous to have that type of continuity and partnership.

Kathryn Shelley 18:04

Absolutely. And then at the very beginning, the other person that's from that original staff, is Shun Kelly. She came on board as a CNA in our earliest days. All three of us are still there, 20 years later. But the startup stage of a new program is so often started by the people who are deeply affected. And, you know, there's a strong sense of ownership and often entrepreneurial staff emerges from the founders. So your nonprofit board of directors in those early stages is often more of a programming board, consumed with all the details of delivering service and creating those services.

Ellen Bernstein-Ellis 18:49

Okay, so that's what the startup looks like, or the infancy stage. Let's move on to adolescence.

Kathryn Shelley 18:56

It can be a little rocky, like the usual stage. When you move further into the adolescent stage, the conversations, of course, have evolved to how to ensure the well-being and the longevity of the organization. For a nonprofit, that's the stage where recruitment needs to happen to transition from the founding programming board to a governing managing board. This is where I've seen organizations falter and get stuck at this stage if their leadership team remains homogeneous. Even more so if staff isn't equipped or unable to dedicate the time needed for financial well-being. This is where expanding to experts in fund development, social and broadcast media, and corporate and healthcare leaders can really open new spheres of expertise and influence.

Then of course, I'm thinking about if you are housed within a university setting, fundraising people are typically already in place within the Office of Advancement. Of course, that's where you're going to really keep that relationship, hopefully, top of mind. You are supplying good stories of the impact that you're making, so that the advancement office team is able to communicate those stories as they're doing fundraising for the university and your program.

Ellen Bernstein-Ellis 20:41

How about moving on to the mature stage? Tell me a little bit about that.

Kathryn Shelley 20:49

So yes, so the mature stage is where the governing managing board transitions to a true governing fundraising board. If you've already brought in a variety of skill sets in the previous stage, then it's more board members with high influence that are really more easily recruited. It's important to also keep the advancement officer with those news stories, and to keep your board just inspired with the stories of what you do.

Ellen Bernstein-Ellis 21:26

If you happen to be an SLP, who is new to these types of concepts, is there a resource you can recommend to learn more?

Kathryn Shelley 21:37

Absolutely, there's so many. I have to say that, at heart, I'm an introvert. Just the thought of asking for money makes my palms sweat, and it just feels rude.

Ellen Bernstein-Ellis 21:51

Okay, I have sweaty palms too.

Kathryn Shelley 21:55

But here's the thing. There are so many learning opportunities out there. I've taken advantage of so many that have been provided in our region, and that I could find online. Now, of course, Aphasia Access is full of people who have started small to large programs within all types of settings.

Ellen Bernstein-Ellis 22:17

That's a great point. And that's part of the strength of that community. For sure.

Kathryn Shelley 22:21

Absolutely. And I can tell you that even at the Aphasia Access Leadership Summit, this March, there's a roundtable session called “Show Me the Money”. There's a community of people, speech pathologists, you know, all waiting for you.

Then, also, Aphasia Access is launching a new mentoring program, and it's a great place to get one on one advice about all kinds of topics. That's within Aphasia Access.

Then I would suggest searching the internet to see if there's a Nonprofit Management Center near you, because they're scattered across the country. They are a treasure trove of local resources. Importantly, they typically have a foundation search directory available to search funders by state ,region or interest area. They're a great local resource. Lastly, I'd recommend two things, the National Council of Nonprofits, and BoardSource, both premier organizations with lots of resources.

Ellen Bernstein-Ellis 23:29

That's great. You mentioned local resources and I'm sure some of these have great online resources to support and get you the knowledge you need to start this process to successfully implement these new programs, whether they're small or large scale.

In terms of capacity building, when we had our planning meeting, you mentioned something that really resonated with me and I want you to bring that back up. It's about expectations and time. I was wondering if you would share that with the listeners?

Kathryn Shelley 24:07

I've had such good fortune to come to know speech pathologists, just top of the line people wanting to change the world. I know how hard you all work and you all are in the life transformation business, helping people with complicated lives. It seems to me unrealistic to expect the same people running programs to also carry the major weight of fundraising, because what I know is that grant applications and a diversified fundraising strategy are a specialized skill set that can certainly be a full time job. Lots of foundations offer what they call capacity building grants. I would suggest prioritizing the cost of a skill development person, on contract or on staff as early as possible, that will really free you up to tend to the people and create the programs that you're trying to create.

Ellen Bernstein-Ellis 25:13

I think you're speaking to the “it takes a village” model.

Kathryn Shelley 25:19

So, absolutely and there's only so many,many hours in the day, right?

Ellen Bernstein-Ellis 25:23

Well, let's then talk and offer our listeners some tips for implementing financial sustainability best practices, because I know that's really important to you. Where would you like to start? Share a best practice and then a tip to go with it.

Kathryn Shelley 25:38

Okay, so always, the first best practice, in my mind, is capturing the human story. And the tip I would offer, especially in the age we live in, is to make sure you're sharing the real plight of people with aphasia in their own words, because it helps others understand the impact of your dream, instead of just feeling like you're there begging for dollars.

So take out your cell phone, ask people with aphasia and their loved ones, what it was like before you came along, how their life has changed, or would change if they had-- fill in the blank-- the aphasia friendly book club or an aphasia camp or the program at that university. Video now is so low cost it's really a level playing field for anyone wanting to launch a dream. So take those videos and then strategize where best to share those stories.

Ellen Bernstein-Ellis 26:37

Well, that's a real doable tip, I think. And I want to recommend to our listeners, just visit the Aphasia Center of West Texas website, where you feature some compelling member stories. And do you have any lessons or tips about how you selected those stories?

Kathryn Shelley 26:55

Not so much about how we selected them. I remember one time, we literally just set up the studio, we did hire a professional videographer, but we just hired him for two and a half hours. And then we asked anybody that wanted to come in to just have a seat. And we asked them about life before us and what difference we make. What spontaneously came out, in gestures, we of course, had some aphasia friendly tools sitting there if they needed those, but it's so powerful, what people will communicate if just given the chance?

Ellen Bernstein-Ellis 27:39

Well, I think the first time I went to your website is because Audrey Holland said that everybody should listen or watch Ann’s story. I think that's still up on your website. Is that right?

Kathryn Shelley

It is.

Ellen Bernstein-Ellis

So Ann’s story. Kathryn, would you like to share another best practice?

Kathryn Shelley 27:57

The second one I always think of is to utilize your regional resources. A tip is to find the Community Foundation closest to you. There are, I know, over 700 scattered across the United States. And my understanding is that something similar exists in a lot of countries.

So in our country, a Community Foundation is a public charity that typically focuses on supporting a geographical area. They support local nonprofits and educational institutions. If you're a university, it would be through the Office of Advancement because that usually is a 501 C3 arm of a college or university. Whether you're going with someone or setting up the appointment yourself, the main point is that the Grants Officer at a Community Foundation wants to talk to you, they really do. This is their mandate, to fund new endeavors and sustain good causes in the community. So they have donor advised funds, endowments, scholarships, field of interest funds, giving circles and more. And they're all about making good things happen, especially for marginalized populations, like people with aphasia,

Ellen Bernstein-Ellis 29:18

Right, that's great to have something tangible like that, that we can find in all of our communities. Do you have a third best practice you can share?

Kathryn Shelley 29:27

Sure, the third best practice I think, is to create a strategy to continually expand relationships and the possibility of donors. It's really about beginning relationships, not knowing where they might lead. So for the Aphasia Center of West Texas, we host what we call “Talking and Tour” three to four times a year. We have chosen after people get off work before they go home, as a happy hour type event. They know from the flier that we will not be asking for money. We do show people a video featuring a variety of our members with aphasia sharing the impact of our services. It's around eight minutes long. And then our executive director Kitty Binek, shares about our events, a bit about our program, our board of volunteers.

We make sure that we invite key people in town, such as realtors, ministers and rabbis, financial planners, and business people. Our board is responsible for bringing guests as well. It's really a place to cultivate a beginning relationship and an awareness of aphasia and what we do. We've certainly gained volunteers and donors in the process, but regardless, we find people are really inspired when they leave.

Ellen Bernstein-Ellis 30:55

I think you're pointing out the importance, that's in the literature on financial sustainability and healthcare innovation, of identifying your champions. That is an element that seems to be mentioned in numerous articles. You have to find the person who's motivated to support your program, whether you are at a university or community nonprofit. I remember an early episode with Janet Whiteside, Episode 17. She spoke about how the dean of her university asked her to share her dream. He wanted to know what it would be and then when he heard it was about building this Aphasia House, he was committed to raising the funds that would open the doors to this dream. That was just so inspirational, that type of partnership and championship. Any tips around identifying your champions?

Kathryn Shelley 31:50

Sure, if I go back to the beginning, like Janet Whiteside and Jodie Morgan, all of us listened to our heart’s desire to make a difference. And then we started talking to others. For me, there were a couple of community people that listened to me talk. And I was just talking everywhere I could think. What happens when you start talking, is that the power of good in the universe does open doors. In addition, you find the dreamers who came before you. So Aphasia Access, and the Aphasia Institute are great places to find community. But if you start talking in your own community, it really is contagious. I do think that the world does start opening up to you,

Ellen Bernstein-Ellis 32:47

That's really inspirational advice. It just really goes to the heart. And I really appreciate this conversation today, because fundraising and finances can be very scary and today, you've made it feel so much more doable--lead by what's in the heart, and I really appreciate that. So thank you. Is there anything else you haven't had a chance to cover that you just wanted to share with the listeners?

Kathryn Shelley 33:15

The one thing that I haven't mentioned that I have used in fundraising, and in populating a request for media or anything like that is I've been using the Aphasia Access State of Aphasia Report. I really am not trying to continually go back, but it is unlike anything I've ever seen. Instead of finding statistics, and all kinds of things in all kinds of places, all those stories and statistics, so much of what we all need to populate grant proposals and give them media sound bites is all in there. It's so worth it.

Ellen Bernstein-Ellis 34:00

I personally have also had an amazing experience with that as a resource for multiple tasks. And I just want to let our listeners know that recently in December, I think it was episode 96, we actually featured Nina Simmons-Mackie and Jamie Azios, telling us about how they're updating the report and what it's going to look like next. That is absolutely exciting. I am so grateful that that will soon be in our hands as well. So thank you for bringing that up.

It's time to wrap up this episode. But I must ask you one more thing, Kathryn, and this is a fun one for me. If you had to pick only one thing we need to achieve urgently, as a community of providers and professionals, what would that one thing be for you?

Kathryn Shelley 34:50

I think that's easy. For me, I say this with the greatest respect, but I do think it's diversification. It really is. Is my observation over these 20 years that if the condition of aphasia is going to become a household word, and if services are really going to reach the people who need them, then we must take our passionate storytelling selves and invite experts in marketing and fundraising, broader healthcare and community leaders who have the expertise and can help open more doors to other communities of influence.

Ellen Bernstein-Ellis 35:29

That sounds really important, easier, maybe easier said than done, but absolutely essential. So thank you. Thank you for being part of the podcast today, number one and number 100, Kathryn.

Kathryn Shelley 35:42

Thank you so much.

Ellen Bernstein-Ellis 35:42

Our pleasure. I'm gonna thank our listeners as well. And for references and resources mentioned in today's show, please see our show notes and they're available on our website, www.aphasiaaccess.org. And there you can become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy that Kathryn described at the start of the show. And if you have an idea for a future podcast episode, email us at info at aphasiaaccess.org For Aphasia Access Conversations, I am Ellen Bernstein-Ellis, and just thank you again for your ongoing support of Aphasia Access

References and Resources

Aphasia Center of West Texas, https://aphasiawtx.org/

• Aphasia Anecdotes including Ann’s story (from website)

https://aphasiawtx.org/about-us/

Brooks Rehabilitation Aphasia Center: https://brooksrehab.org/services/aphasia-center/

Aphasia House, University of South Florida: https://healthprofessions.ucf.edu/cdclinic/aphasia/

State of Aphasia Report, Aphasia Access: https://www.aphasiaaccess.org/reports/

Board Source, https://boardsource.org

Nonprofit Management Center, https://www.nmc-pb.org/resources

National Council of Nonprofits, https://www.councilofnonprofits.org/

Nonprofit Life Cycle, https://speakmanconsulting.com/resources/nonprofit-lifecycle-matrix.pdf