Pat and Larry Wallace’s 17-year-old grandson lives with autism spectrum disorder, a condition with no known cause or cure that affects roughly 1 in 68 children, according to the Centers for Disease Control and Prevention.
“When he started [applied behavioral analysis] therapy in 2004, it was very expensive, and there was no insurance covering therapy,” Pat said. “We knew a number of parents and grandparents who were mortgaging homes to pay for therapy.”
ABA therapy is research-based and data-driven, with therapists often spending intensive one-on-one time with clients to track their progress, Pat said. Children are positively reinforced for correct behaviors but not punished for falling short of their goals, she said.
In 2007, the Wallaces launched FACES—the Foundation for Autism Care, Education and Services—a group that fundraises for families who cannot afford ABA therapy and provides scholarships for students studying to become ABA therapists. In the last 10 years, the group has distributed more than $1 million among 213 clients.
The organization relies on private donations and three fundraising events throughout the year—a golf tournament, a clay shoot and a casino night, Larry said.
“We have a board member who has an autistic child, and he gave us a figure that it costs about $100,000 per year for him to take care of his child,” Larry said. “It’s a very expensive situation.”
Each case of autism is unique in the indicators presented through the child, Pat said. Meltdowns, running away, lack of eye contact and trouble communicating are common factors, but others have physical difficulties, such as gastrointestinal problems or seizures.
Children living with autism have different learning styles than a typical child, she said. ABA therapy covers behaviors, life skills and academic skills depending on the child’s needs. Many will go on to graduate from public school and live functionally while others, like the Wallaces’ grandson, have never spoken a word.
“If you have a child on the end of the spectrum where our grandchild is, it never ever, ever leaves your mind,” Pat said. “You can’t be at rest because you need to know where they are and what they’re doing in addition to other things like who’s going to take care of them down the road. That lives with us all the time, and we’re just the grandparents.”
Larry said the organization’s volunteer board of directors meets monthly to review scholarship requests and vote on whether to issue funds to one of about 15 Greater Houston area centers for a particular child’s ABA therapy, such as Spectrum of Hope in Cy-Fair.
“We check to make sure [the center is] ABA-certified and that they’re enrolled, that there’s space for the child,” he said. “We don’t give families the money directly—we give it to the center so we know it’s being used correctly.”
The nonprofit only has one paid employee—Fundraising Director Lauren McCown—and an underwriter funds her salary, so every financial contribution goes directly toward therapy services for autistic children or fundraising efforts, Larry said.
Many insurance companies now cover ABA therapy to an extent, but FACES can help families pay deductibles, copays and other out-of-pocket costs. Therapy services typically cost about $18,000 quarterly. However, insurance policies cap services at a certain dollar amount or number of hours.
“If the family is able to get an insurance policy that covers ABA therapy, or maybe they get a raise and they don’t need us anymore, the next kid’s right behind them,” McCown said.
FACES is not looking for a cure, McCown said. The nonprofit instead looks to address a problem the best way it knows how—with scientifically proven therapy that gives the greatest potential for learning and growth.
“You can’t take [autism] away, but what we can do is make sure [families] can afford their ABA therapy,” she said. “We have one parent who said she never heard her son’s voice, and now he says, ‘I love you.’ That’s a world of a difference to people, and that’s what we’re here for.”