MOUNT HOLLY, N.C. — A nonprofit organization is helping to ease financial stress for families of children with autism and helping parents access resources.
AJ and the Cool Kids will award a $1,000 scholarship to a family during its annual fundraising gala Saturday. The organization encourages the gift to go toward services, but parents can use it for other expenses.
“My foundation can’t cover your entire cost, but we want to take some burden off of you, even if it’s for a month or two months to make sure you have a break from paying for those services out of pocket,” Tonya Tolson, director of the nonprofit, said.
Tonya and her husband started the organization last year after their experience with their son, AJ. They paid for private speech and occupational therapy for AJ for three years.
The rising first-grader was diagnosed with autism at 18 months after Tolson noticed he stopped talking at 12 months.
“[I was] thinking it was my fault, it was something I did,” she said.
Tolson now calls the diagnosis a blessing.
“I think God designed him especially for me. He knew what I needed, he knew what my husband and I needed, and that’s why he gave him to us,” Tolson said.
She said AJ received therapies through the Children’s Developmental Services Agency at no cost until age 3.
CDSA offers services including evaluation, assessments, service coordination, special instruction, and physical, occupational and speech language therapies for infants and toddlers with special needs and their families.
Medicaid, a sliding fee scale or private insurance are used for certain services, but no family is denied services for inability to pay.
“Early intervention is really key. We know that the birth to 3 space of time for young children that their brain development is just exploding at that time. They are learning things that they are going to need throughout the rest of their lives, and we know their social-emotional development is really critical during that time as well,” CDSA director for Mecklenburg County Lisa Cloninger said.
From age 3 to 6, the Tolsons, who both work, pursued private speech and occupational therapy for AJ instead of the special services provided at their school district.
“It wasn’t a viable possibility because the program only services you from 7:30 a.m. to 2:30 p.m., and you have to find before- and after-care, and I didn’t have that,” Tolson said.
They paid for the private therapies through insurance, which amounted to $255 a week.
“I decided to pay for those services out of my pocket and that’s where this foundation sprung from because I knew I could handle those expenses but there are some parents out there that can’t handle those costs,” Tolson said.
According to the advocacy organization Autism Speaks, the condition costs families $60,000 a year through childhood. This includes costs in special services and lost wages for parents.
But Autism Speaks director of state of government affairs Christa Stevens says the financial expense is only one facet of the very complex issue.
“If the family is not supported, if the families don’t have the mental health support, for example, to be stable and navigate these stresses, we know that it will be very difficult for them to facilitate what the child needs,” Stevens said.
Last year, AJ and the Cool Kids provided a scholarship to Kai McCoy.
“It came at a time that was definitely needed because my son had a growth spurt. I had to give him a new bed, I had to give him new shoes," McCoy said. "And a lot of services that are often provided are not covered if you are employed.”
The Tolsons hope to make a difference in another family’s life at their gala at 8 p.m. Saturday at the Harvey B. Gantt Center in Charlotte.
If you are interested in learning more, attending or donating, click here.
For more information about the CDSA, click here.