Imagine a way for families of children with autism to be able to afford all the therapies their kids need.
That was the thought Joel and Carolyn Price had when they began raising money for autism causes, which grew into founding the nonprofit Imagine a Way in 2011.
The idea came out of the Leander couple's experience with son Joshua, who is now 14 and was diagnosed with autism when he was 2.
"He was not developing verbally," Carolyn Price, 47, says. "He was essentially nonverbal, but he had sounds.
"He had a strong response for things. He was more upset than we saw with our older son."
Then there was the biting. At his day care, he would bite a kid and then be placed in a quiet space away from others. He kept biting, she says, because "he was so overwhelmed with the noises and sounds." It was like he was thinking, "I bite, I get to go to a quiet place," she says.
He got kicked out of day care.
Joshua's behavior made it hard for the family to go out to eat or to social gatherings. Always, one of them would have to walk around with Joshua, away from everyone else.
"We never knew what would trigger a tantrum," Carolyn Price says.
It put a huge strain on everyone in the family, including son Jacob, who was two years older than Joshua.
The family became isolated. "You're an island unto yourself," she says. "You have no social life. Our relationship wasn't easy. We survived, but just barely."
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Around that time, their pediatrician came back from maternity leave and suspected autism at Joshua's next wellness visit. A neurologist confirmed and on a piece of paper wrote "spectrum disorder," which they later learned was autism.
"It was probably good for me," Carolyn says, that the doctor didn't write "autism." She doesn't think she was ready for that word.
"We knew nothing about it," Joel Price, 49, says of autism.
What they knew, they say, was from the movie "Rain Man."
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Neighbor Billy Niels, who now is the president of Imagine a Way, remembers asking what the diagnosis meant. Joel told him, "The doctor told me I could be changing his diapers when he's in his 30s." Niels remembers Joel's response: "If that's all it is, I can handle that."
"I didn't know what to say," Niels says. "That was so far above me at that point. My kids were healthy."
Doctors recommended a lot of therapies for Joshua, including speech and occupational therapy, but their insurance only covered so much. The Prices were lucky: Because they own their own company, which manages events for trade organizations, they could customize their insurance the following year to cover more speech and occupational therapy. They also learned that Texas had a new law that said if an insurance covered therapies, there was no limit on the number of sessions a child could receive. They would not have known this without the extensive research done by Carolyn Price.
With therapy, they began to see changes in Joshua.
"He would leap forward," Carolyn Price says. She remembers when Joshua was 3 and he sang "Twinkle, Twinkle Little Star" for his grandfather's 70th birthday. "Everybody was so excited," she says. Occupational therapy was making a difference.
The biggest difference came when he started ABA therapy — applied behavior analysis, which uses repetition and positive rewards to get a desired behavior.
"By the time he was 4 years old, it was like an entirely different person," Niels says. "They were no longer worried about changing diapers. It was all just about quirkiness."
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The Prices learned through seeking therapies for Joshua that what insurance will and will not cover often is tricky, as are how deductibles work and how co-pays can add up. Also tricky: what the law requires in each state and what insurance and therapy offices know about those laws. They found ways to make sure their insurance company covered what Joshua needed, and they learned not every family was as lucky.
While they would hit their $5,000 deductible within the first six weeks of the new year, "we were extremely fortunate," Joel Price says. Families can easily spend tens of thousands of dollars a year on therapies if insurance won't cover them or will cover only part.
One day when Joel Price was in the waiting room at one of Joshua's therapists, he overheard the receptionist take a call from a mother seeking services for her child. From what he could hear of the conversation, he learned that the therapist was recommending three days a week of therapy but that mom could afford only one day a week, and even then it would be a stretch. Price remembers the receptionist telling the mother, "We can't help your child with only one day a week."
The call ended, but it stuck with Joel Price.
And then a few things happened. Friends including Niels wanted to help the Prices during the period when Joshua was being diagnosed at age 2 and beginning therapy. Friends invited other friends to come to a house party to raise money for Autism Speaks on behalf of the Prices. That first party raised $14,000.
Joel Price would talk about what was going on with their family, because Carolyn Price just couldn't.
"It was so scary," Carolyn Price says. "Oh, my God, there's something wrong in my family."
"And I'm saying it out loud," Joel Price says.
"And I'm asking for money," Carolyn Price says.
They raised money for Autism Speaks for about two years and then began asking where the money was going. Was it helping locally? They learned that it was going to help fund research, which was a good thing, they say, but they kept coming back to that mom on the other end of the phone who couldn't afford therapies for her child.
"We can do more," Joel Price says. "We can help people locally."
They reached out to their friends and supporters and began Imagine a Way.
It started with one child and grew to 45 having received grants, 26 of whom are currently receiving grants.
Niels says an early slogan was "One child, one family at a time." "We've lived that."
Imagine a Way covers all the out-of-pocket costs for therapies including occupational, speech and ABA. Families have to apply and fit these criteria:
• Not make more than $100,000 a year, or $110,000 a year if there are two children who need therapy
• Not qualify for Medicaid, because it will cover these therapies
• Have a child between ages 2 and 7 because that's the age range when these therapies have been shown to have the most impact, the Prices say
• See a licensed therapist
• Continue to make progress with therapy
The families must fill out an application and show a tax return and documentation of an autism diagnosis to be considered. They also have to live in Central Texas.
Since the first family was selected in 2012, Imagine a Way has funded more than $888,000 in therapy. Imagine a Way makes a long-term commitment until the child's 7th birthday, which has averaged to 2.7 years of therapy per child and more than $11,000 on average per year per child.
They raise the money through their annual gala and an annual clay shoot. Often it's one-on-one asks.
When they commit to families, they are committing to multiple years of therapy, Niels says. "Joel doesn't take risks. ... We're careful to bank that money commitment we made so we can keep going," he says.
"Austin is a very generous community. What we saw over the last eight or nine years of Imagine a Way is people genuinely want to help. We just have to share the story and the tremendous result each family has."
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Often, they are able to help families advocate to their employers and insurance companies to expand what's covered, and they are able to educate families about what Texas law says about therapies for autism and insurance coverage.
As Imagine a Way grew, it went from being volunteer-based to hiring a part-time liaison to the families two years ago to hiring a full-time development director this summer.
Liaison Amy Hamand started as an Imagine a Way recipient for her daughter Mara, who is now 10. Her insurance didn't cover ABA therapy, and it would have cost $50,000 for the 20 hours a week Mara needed, she says.
"When they told us they were going to help us, it really changed our life," Hamand says. Mara was not talking, was not potty-trained, wouldn't keep clothes on. "We couldn't go anywhere," Hamand says. "We didn't know when she would melt down."
After Mara was able to receive the recommended 20 hours a week of ABA therapy, Hamand says, "fairly quickly she started making progress. She started to say words again." Mara learned what it meant to answer a question, which meant she could start to communicate. She quickly was potty-trained.
"Therapy has taught her to exist in the world that the rest of us live in," Hamand says. "It has changed her life and changed our whole family's life. We can be a family. We have different challenges than other families, but we can exist. We can be happy."
When families are told that Imagine a Way is going to take care of all their child's therapy needs, Hamand says, "They are generally shocked and taken aback that somebody would do this for them."
"You can see the weight fall off their shoulders, and that's the weight they have been carrying," Joel Price says.
Amaya and Jason Mendenhall found out about Imagine a Way when Amaya posted to a special needs Facebook page that even with insurance, the therapy for their sons Parker and Bennett would cost tens of thousands of dollars. Hamand answered the post with information about Imagine a Way.
"We literally had $40,000 a year in therapy," Jason Mendenhall says. "We had maxed out credit cards. We sold a car, we refinanced our house; we had no other options than to stop therapies altogether."
He already was working as an Uber driver until 2 a.m. after working a full day as an executive at a data company, just to make extra money for therapies.
"We were planning on selling our house because we couldn't afford therapies," he says. "Literally, we had no other choice: Either do what's right for our kids or not sell our house."
They also contemplated getting divorced so that Amaya would qualify as a single mother for Medicaid. Or they thought about Jason getting a job that paid less. "It was drastic measures that didn't make sense."
Because of the additional therapies that the Imagine a Way grant covered, both boys, who are 7 and 6, are now verbal. "It helped us learn how to communicate with our children," Jason Mendenhall says.
"We went from three-word sentences to full-blown sentences," Amaya Mendenhall says.
It also helped them learn how to get the most out of their insurance company's coverage.
The biggest change, Jason Mendenhall says, was "the burden that lifted from the entire family."
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The Langi family was facing a $50,000 to $100,000 therapy bill for son Cannon, who is now 7. Their insurance, which covered a $1 million-plus bill from Cannon's neonatal intensive care unit stay, didn't cover this kind of therapy.
"There was absolutely no way," Jake Langi says. "It would have been impossible. It would have been devastating knowing he needs this. For him, it's like air to breathe. He would have been stuck."
With Imagine a Way's grant beginning in May 2016, Cannon was potty-trained by that July and eating with a spoon. He was using sign language, which led to using an iPad to communicate and a few words.
"Honestly, Imagine a Way was the greatest gift we've ever received by far," Stephanie Langi says. "It was something we couldn't do ourselves. It took a huge weight off our shoulders."
As Cannon progressed, Jake Langi was able to go back to work and now works at the University of Texas' football program.
Stephanie Langi learned how to advocate with her employer about including ABA therapy coverage. Just as the Imagine a Way grant was about to run out because Cannon was turning 7, her company agreed to include coverage, not just for Cannon but for all of its employees' children nationwide, she says. She showed them a video Imagine a Way made of Cannon's progress.
Theresa Hornung couldn't believe that Imagine a Way would cover all of her sons' therapies when she applied for the grant. "I thought my heart was going to come out of my chest," she says, when she learned her children would receive the grant. "A piece of me was still holding that something is going to go wrong."
Her twins, Everett and Cooper, who are now 9, had different levels of language. Cooper didn't speak until he was 4. Everett could speak, but they realized he just repeated language he had heard. Cooper also has a rare genetic growth syndrome that caused him to have cancer as a baby. The treatments for that already put the family in debt.
Knowing that her sons needed hours of therapy, she applied for a government grant program, but her cost still would be $800 a month.
She heard about Imagine a Way from a fellow mom of a special needs child.
"When Cooper started to talk, I didn't think that would happen," she says.
Everett became able to tell them about his day in language that was his own.
She appreciated that she got to choose the therapists and Imagine a Way would just pay the bill.
"It's hard not to be cliche about it, but it changed everything," she says. "As a parent, it really helped us mentally because we were able to help our kids."
Often, families have been doing some therapies, and even some ABA therapy, before an Imagine a Way grant, but they can't afford to do everything doctors are recommending.
That was true with Heather and Preston Wendt and their son Jake, who is 6. He had been in early childhood programs and early intervention preschool through the school district, but he wasn't making progress. With the grant, they were able to pull Jake out of school and put him into ABA therapy full time last year.
He has learned how to communicate with others and manage his emotions, they say. He can now say hello to his peers at the therapy center and ask them if they want to play with him.
He's also able to play with his brother Jackson, who is 18 months older. Before that wasn't possible because he didn't have a way to communicate without it breaking down into a fight.
Jake has made so much progress that this month he'll be in a mainstream kindergarten classroom with an aide, instead of a life skills classroom, which had been the plan earlier.
"People who don't see him every day are blown away by it," Heather Wendt says. Teachers say he's a completely different kid.
"It's been not just for Jake but for all of us," Preston Wendt says.
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One of the big goals for Imagine a Way for the next five years is to expand the program throughout Central Texas, as well as to other regions. They say they have the knowledge to help others start an Imagine a Way in their communities.
"They have no intention of just being OK with where we are," Hamand says. "They want to continue growing. There's a lot of amazing people who make Imagine a Way work, and the Prices are the heart of it all."
Niels describes the Prices' roles as: "Carolyn and Joel are both extremely passionate about the operation, but Joel is kind of the guy who stays in front of it. Carolyn is the tough business owner, but when it gets into this, she gets too emotional."
That's why Carolyn Price doesn't weigh in on which families are selected. "It's too close to her. It's too hard. She's been through all of that pain with Joshua," Niels says.
She's also seen the results therapy has.
Today, Joshua is an incoming high school freshman and excelling in school. He's an artist and very creative. He has a concept for a graphic novel, and he started writing a book, Carolyn Price says. This summer he paid for his own plane ticket to visit family in Colorado.
Just like Joshua, Imagine a Way is excelling.
"It has gone farther than I ever dreamed it could," Joel Price says.