(upbeat music) - Hello, I'm Nido Qubein, welcome to Side By Side.

My guest today is a visionary nonprofit leader who has dedicated her life to creating a world of belonging for individuals with disabilities.

As CEO of Extra Special People, she has transformed lives through compassion.

Today we hear from Laura Hope Whitaker.

- Funding for Side By Side with Nido Qubein is made possible by: - Coca-Cola Consolidated makes and serves over 300 of the world's best brands and flavors to over 65 million consumers across 14 states and the District of Columbia.

With 17,000 purpose-driven teammates, we are Coca-Cola Consolidated.

- The Budd Group has been serving the Southeast for over 60 years.

Specializing in janitorial, landscape, and facility solutions, our trusted staff delivers exceptional customer satisfaction, comprehensive facility support with The Budd Group.

- Truist, we're here to help people, communities, and businesses thrive in North Carolina and beyond.

The commitment of our teammates makes the difference every day.

(upbeat music) - Laura, welcome to Side By Side.

Your story is fascinating.

You were a student at the University of Georgia.

And somebody introduced you to something called Extra Special People Incorporated.

What is that?

- So ESP is a beautiful place.

It's a nonprofit organization.

We exist to create transformative experiences for people with disabilities and their families.

And what we know is it changes communities for the better.

We serve a little over 1,500 members throughout the state of Georgia and now in North Carolina.

And we do that through five different communities.

After school programming, summer camps, and then our program job, a joy that employees adult to developmental disabilities.

- So these are individuals with disabilities.

What ages are they?

- From birth all the way until they grew adulthood.

Yes.

- How do you identify them?

Do they come to you?

Do you go to them?

- A little bit of both.

When we go to a new community, we go to them.

We find schools and places where they are.

But now in many of our established communities, they're coming to us in droves every day.

One in six Americans has a diagnosed developmental disability.

- One in six.

- One in six Americans have a develop -- - How do you define these disabilities?

- These disabilities are everything from a developmental disability to an invisible disability like ADHD.

At ESP, we are primarily serving people with developmental disabilities.

- It's interesting to use the word disability.

- Yes.

- Some people don't want to use that word, right?

- They don't, they don't.

And that really signifies what we do.

Once someone comes into our mission, we really use the word abilities.

Different abilities.

- What is it that Extra Special People offers that these individuals can't get somewhere else?

- You know, I think at our core, we all want to belong and be seen.

And ESP provides a community.

And it's something for the families, it's something for the siblings, it's friends.

It's people that they can eventually travel with or have community with.

If you have a six year old with autism, where do you have a birthday party?

What is, who their friend group look like?

ESP provides that.

We have birthday parties for every single one of our members.

- [Nido] Really.

- And so it's really community.

We're providing services, but we're really building relationships and community.

And our whole business model is built on relationships.

- Do you do anything with the educational institutions, you talk to the example of six year old and perhaps others who are in elementary school and high school, maybe even in college?

- Yeah.

- Do you do anything with those institutions to equip them, resource them, inform them how they can, not just treat these individuals, but be helpful and supportive.

- Absolutely.

There's partnerships happening every day.

In fact, we just launched a new program called Seeability.

We imagine a world that sees you the way your dog sees you.

And the premise of that is in elementary schools.

It's launching a program to help kids know how to talk about people with disabilities.

You know, a lot of times teachers or parents say, I don't know what words to use.

I want my child to be kind.

And if one in six people has a disability, we as a nation have to learn, how do we interact with people with disabilities?

What words do we say?

How do we lean in with love?

And so the Seeability program is equipping teachers and students on what it looks like to be kind to all people of all abilities.

What words to use?

And we do it through a little dog that teaches them the lesson that makes it really fun.

So there's one ways we're partnering with the schools, but we partner with schools every single day to help equip, transport individuals to our programs, support them during the summer when schools are not supporting them.

- You went to the University of Georgia, and you have a Bachelor of Science in Special Education, a Masters in autism.

- That's right.

- I didn't realize there was such a master.

- There is.

It's fascinating.

And the research is fascinating.

And it's only growing, which is what makes our program so important.

Autism, I mean, right now, one in six kids is going to be diagnosed with autism today.

And so again, we've got to figure out as a nation.

What do we do with that?

- How do you know what a person has autism?

What are the signs?

- Such a great question.

So joint attention is one of the first indicators of autism.

So joint attention is like, if you are out with a child, even a one-year-old, and you see an airplane and a mom says, "Oh, look!"

And the child looks at the airplane.

Individuals with autism might look at the airplane, but they may not look back at the mom or the dad to find out more information about that airplane.

That's joint attention.

We're both looking at the airplane.

We're both experiencing it together.

So really, what we're finding is that very early on, the sooner that we can diagnose a child, the sooner they can start receiving therapy to start learning some of those social skills, you actually can teach joint attention, but you've got to be able to be diagnosed young enough so that kids can get the therapy that they need to be successful later.

- What are some other disabilities that you work with?

And how do we recognize them?

- Yeah, so we work with individuals of all abilities, rare, chromosomal developmental disabilities, autism, Down syndrome, cerebral palsy.

We have individuals who have had traumas throughout their childhood, who then come to us later on in life.

You know, sometimes you can see a disability a lot of times.

Other times it's an undiagnosed disability or it's an invisible disability.

And so I think part of what we're doing in communities, and this is one of the ways we are changing how an entire community sees people with disabilities and we're teaching people how to be compassionate.

What does someone bring to the table?

What is the abilities that they do bring to the table?

In many of our communities, we are building universally designed playgrounds.

So that little two and three year olds can begin to recognize differences.

And what we know about research is that if there is no barrier to a child's play, if they can access the playground equipment the same way, they'll have a positive experience on that playground.

They are more likely to be inclusive and have positive experiences with people who are different with them later on in life if we can create those experiences early on.

And so sometimes it's just seeing the person, it's seeing the disability, but more than importantly, it's seeing what abilities they bring, what goodness they have inside that God has given them and allowing us to interact and be compassionate from a level of ability instead of disability.

- So what you're describing is a variety of disabilities that must have various degrees of intensity.

- [Laura] Yes.

- And I'm trying to understand how you want you to explain to me, how you take a person with a slight degree of intensity in some area.

For example, I don't think of ADHD in the same way I would think of autism.

- True.

Yes.

Yeah.

- So how do you work with both of those?

What are the techniques?

What are the signals you look for?

What is the rate of success thereof and so on?

- Yeah, you know, what's fascinating is our business model is built around college students.

So when you think about a child who is medically fragile and has a trache or a G-tube who typically has nurses with them, those are the types of individuals that we're serving alongside individuals with high functioning autism that may have an ADHD and an autism diagnosis.

And so one of the things that we do is we do provide a high level of training.

We have a one-to-one ratio.

We never turn a child away due to a family's inability to pay or their disability, which is remarkable because there are programs throughout the country.

- And you support that with government infusion of dollars or voluntary contributions?

- Largely voluntary contributions, corporate partnerships.

You know, I once heard the statistic, it takes $50,000 to raise a typical child.

It takes $2.5 million to raise a child with special needs.

- Really?

- And so-- - How does a family do that?

Obviously with your help and others, but it sounds like almost an insurmountable task.

- And it feels that way to families all the time.

We were just talking about how as a family of a child with special needs, you're constantly knocking on doors and making phone calls and begging for your child to be served for funding.

I remember one time I had three children and my son had grown out of his Nikes.

And I was very frustrated because I had just purchased him Nikes two months ago.

And I was talking to a mom at ESP.

And she told me that her son grew out of his wheelchair.

- Oh, wow.

And I was-- I stopped in my tracks.

And I said, how much does that cost?

And she said, well, it's about $7,500.

And insurance will pay 70% of that.

I've never complained about my child's Nikes ever again.

But you know, they come to ESP and they've been knocking on these doors for so long.

And we have the door, and it's open.

And we know their child's name, and we know what they're great at.

And sometimes there's an 18-year-old dancing in a banana costume with pom-poms because we have a welcome wagon as each family drops off their child.

And sometimes it's the first place that they realize and many of them are crying as they drop off their child.

Because they've never-- there's a difference in being wanted and being cared for.

And at ESP, they are wanted.

And we're providing that relationship largely with a college student to connect with-- - [Nido] Who are volunteers.

--who are volunteers and some of them paid summer staff to connect them just like I was as an 18-year-old when I started at the organization.

- Talk to me about a very common thing that we hear, ADD, ADHD.

- Yes.

- You refer to those as disabilities.

- [Laura] Yep.

Yes.

- And what does a parent do with those?

How do they diagnose it first?

And that strikes me as a different core and core disability than autism or some of the other areas that you mentioned.

- Definitely.

I kind of look at it like a spectrum.

And I look at it like we all have things that we're really great at.

And math is really not my thing.

But if you let me write something, like I just published a book, let me write it, or let me talk with someone, like a conversation that we're having today.

And ADHD and ADD is on that spectrum.

And it's a part of who that person is.

And oftentimes, what I have seen in my 20 years is that it largely comes from a teacher who says this student is having a more difficult time with their coursework.

They're having a difficult time paying attention or they're fidgeting all of this-- - It's an observation.

- It's an observation.

And that's when the parent either goes through more natural opportunities that they have to help with that child.

Or medication.

Is therapy or medication?

- How do you feel about medication?

For example, I think of ADD.

I think of what is an edurol or whatever the -- - [Laura] That's right.

-- name of the medication is.

I've read a lot about the positives and the negatives, the implications left over implications of taking medication all your life.

- Yeah.

You know, personally-- and I've had one of my family members who's gone through this.

I have seen it to be a challenge.

And I think we often do it too early because we don't look at all the other more natural options or even different learning options.

You know, a lot of individuals, I have an eight-year-old boy.

And he's moving all of the time.

He needs a smaller classroom.

He needs to go to recess three or four times a day in order to focus.

But he's doing fabulous at school because he has those opportunities to have a diverse learning environment.

And so I think there's so many options.

Personally, I've seen that medication really early is challenging.

But for some, it is the right-- I think the probably the right choice.

- So what is it that you do with the parents?

It strikes me that the caretakers need a lot of attention and love and education and motivation.

- You know, I think they too want to be seen and they want relationships.

And we're constantly providing support for families, whether it's financial support.

But really, relationships is what we do best.

That's the magic behind what we do.

As an example, this is remarkable.

In just a couple of weeks, we will have 200 college students go down to the beach.

And we will have 100 families show up with a tractor trailer of beach wheelchairs.

And some of them have never even touched the sand.

Never been to the beach.

- These are wheelchairs you provide.

- Wheelchairs that we provide.

And not only do they get a beach wheelchair for their child who might need it, they get a buddy from college who's there to help with, load their child onto the sand, play with their children.

So maybe mom and dad can go for a walk on the beach.

And then the families are providing, giving the opportunity to have relationships together, sitting on the beach, meeting another family who has an annual with autism.

- [Nido] Support system.

- And the support system.

And I think at our core, we want to be seen and we need relationships.

That's what creates true belonging as those relationships.

- Finances aside, which seems to be the common challenge for a lot of nonprofits.

What are some of the challenges that you have in your work?

- I think part of-- particularly for nonprofits is a nonprofits, just a tax code.

We're a business.

And at the end of the day, our business and our level of excellence goes back to the people that we serve.

But the way our business model works is I'm sitting in front of the donor.

And the donor doesn't receive a dime by investing in us.

They don't receive anything that is tangible.

So I think part of the challenge for us is helping them to see what they're investing in and what they're receiving that's intangible.

How they're changing communities further better.

How they're changing that little two-year-old's mindset so that we have more inclusive communities long term.

And so I think that's an ongoing challenge for nonprofits is the value proposition of investing in an organization.

Something for us is we're constantly looking at non-philanthropic dollars.

How can we continue to create value in our organization that isn't donor dollars?

So we can keep using donor dollars to build our communities.

And that's how Java Joy came about our mobile coffee cart.

That is a non-philanthropic effort.

A social enterprise is a term that's out there that runs like a business.

Employs people with disabilities, is mission aligned but is bringing in income for the organization to help balance that philantropic.

- So Java Joy is a mobile, is a truck, what is it?

- It's a truck.

It's a mobile coffee cart.

And it goes into businesses and organizations.

So car dealerships, banks, large high rises.

We also do journeys of joy where we fly.

We've been to London and Texas and San Francisco and New York.

And we fly our joy to that area and serve at large conferences.

And so like me and you, we may travel for our business and that can be annoying to us sometimes.

But if you are a 25-year-old with Down syndrome, you've probably never been asked to use your skills and abilities somewhere else in the country.

And the level of independence that they have the opportunity to do, to fly to a new city and fulfill their job in another place and space.

And so all of those funds that we receive from Java Joy fund back into our programs so that we're never charging more than 25% of what it costs us to a family for all the programs that we do.

- Yes.

What is your retention rate?

If that's the right term, I don't know.

- [Laura] Yeah.

- What is a person with disability entering your program?

What is their tenure?

How long do they stay with you term wise?

How many of them really, you know, through fruition where you see the advantages?

At some point, you have to graduate them, I'm sure.

And they become more independent or somebody else picks up.

- Sure.

And that's the challenge.

When I first took over the organization at 19, we graduated them at age 25.

And I suddenly started realizing like, no one graduated me out of my church.

But that's my community.

This is their community.

So what are we graduating them to?

And there was-- I couldn't answer that question.

Like, what are we graduating them to?

And so we removed that age limit.

And so that's one of the reasons we built Java Joy is to graduate them to a job.

But we have individuals of all ages from zero, from the time they're born, they can do music therapy with their family all the way.

And so I think our oldest individual, Val, she has purple hair and she's 62 years old.

- Sounds very complicated to me.

How do you provide services for a one-year-old and a lady with purple hair?

How do you do-- - She would fit in around the university, by the way.

- Yes.

How do you do that?

It seems to me that you would need different skills, different educational mechanisms, different expertise to communicate and really affect tremendous impact.

- Yes.

And it's probably a lot more simple than you think.

When your business model is built on relationships, you get to know that particular human.

So you may have a 20-year-old who's buddied with Val, who's 62 with purple hair, for 12 weeks.

And so in week one, she gets Val's folder, online folder, learns everything about Val and establishes a relationship with her.

And so that 18, 19-year-old -- - So the relationship is not physical.

It is, in fact, a friendship.

A friendship?

It's a friendship-- oh, no, it is in person.

- It's in person.

- It's in person.

And so she is providing programs for her and serving her at our after-school program or our summer camp program, but she knows Val.

And meanwhile, there might be another 20-year-old who has a three-year-old with Down syndrome.

And they have learned that particular individual and their serving.

Now we do break them up by age group.

So you don't have Val, who's 62 with the three-year-old with Down syndrome.

She's got an age group of individuals that are her age.

But if you're focused on relationships, then you're meeting the person where they're at and you're focused on the abilities they're bringing to the table.

- It's clear to me that you are very committed to this cause.

I mean, you've done it as a camp counselor and now you're a CEO of Extra Special People and Java Joy as a subsidiary and so on.

You ever get frustrated that this is a big country with a lot of people?

You said one in six have some degree of disability or some form of disability.

You ever get discouraged that 'Golly, I'm planning seeds, but I'm really not reaching all of them?'

Or are you extra inspired by the notion that I can light a candle here, light a candle here, and maybe others will be inspired to join the cause or do something else in their world to make it a better place?

- Such a good question.

I think it's depending on the day.

Most of the time I'm inspired because I've seen what has happened in our five communities.

And I see that that little two-year-old on the playground turns into an 18-year-old who volunteers with us, who turns into a 30-year-old doctor, who is more compassionate and is leaning in and away that he wouldn't have had he had not been through ESP.

And so I think most of the time I'm inspired, but even yesterday I was frustrated because we can't grow fast enough.

I wish we had unlimited funds in our hub so we could spoke all over the country because we have 20 communities that have said we need ESP and we can't get to them fast enough.

And so I think that's one of the reasons I wrote the book, the joy exchange because I thought, if I could get this book in the hands of an 18-year-old on the other side of the country and shift their perspective on what it looks like to love their neighbor, to lean in with people who are different from them, then maybe I can change a little bit, I can plant a seed on the other side of the country that our organization may never touch.

So most of the time inspired, but sometimes a little bit frustrated and focused on growing the organization.

- That's a sort of excellence.

We should all be trying to do better and have some degree frustration by the fact that we can't achieve everything that we'd like to achieve in the time limits that we all have.

- So the title of the book is The Joy Exchange?

- [Laura] The Joy Exchange.

- And what is the premise of the book?

- So The Joy Exchange, the subtitle is "Finding life's greatest lessons in those you least expect."

And it's my 20 years at ESP and some of the greatest lessons I've learned from people with disabilities.

- And give us two or three of those.

- Okay, so one of the parallels that I make is the parallel of a dandelion.

And I did a TED talk on this called the dandelion effect.

And the shift in the perspective is, when you're a child, you see a dandelion.

And you see it as a beautiful yellow flower.

And you may pick it or blow it to make a wish.

And you think it's amazing just like a tulip or a daffodil.

But then somewhere along the way, culture teaches you that that dandelion is a wheat.

And I parallel that to people with differences.

You know, when you're young, you see people with differences with wonder and beauty, the way that God designed them and designed you.

And then somewhere along the way, based on our experiences, we begin to see people with differences as negative, as awkward.

And so one of my premises in the book is that awkward leads to aha.

Leaning in to awkward situation.

Culture today says, 'It's awkward, I'm out.'

And my kind of anthem is like, no, it's awkward, lean in.

I talk about disgust and delight.

I talk about 18-year-old boys who come in and they're changing adults in wheelchairs.

And at first it's disgusting.

You're changing an adult diaper on a changing table.

But when they lean in, by the end of the week, these 18-year-old college boys are drinking a Coke, eating their peanut butter and jelly, sandwich and changing an adult in a wheelchair because they're disgust turned into delight when they chose to lean in.

So those are some of the principles in the book.

Really about how we treat one another and how we lean in with love.

- Well, thank you for doing this work.

What makes the world go round is that people who step up and step out and do something that may seem difficult or different and in the process create goodness and helps people.

And that's exactly what you're doing.

And for that I honor you.

And thank you for being with me on Side by Side.

- Thank you, for your time.

I'm inspired by you and your people here.

(upbeat music) ♪ - Funding for Side by Side with Nido Qubein is made possible by: - Coca-Cola Consolidated makes and serves over 300 of the world's best brands and flavors to over 65 million consumers across 14 states and the District of Columbia.

With 17,000 purpose-driven teammates, we are Coca-Cola Consolidated.

- The Budd Group has been serving the Southeast for over 60 years.

Specializing in janitorial, landscape and facility solutions, our trusted staff delivers exceptional customer satisfaction, comprehensive facility support with The Budd Group.

- Truist, we're here to help people, communities and businesses thrive in North Carolina and beyond.

The commitment of our teammates makes the difference every day.