On the warm spring morning after her eighth birthday, Abigail Tappert studies a gift she received the night before. Sunlight catches red highlights in her shiny brown hair as she studies the toy. She smiles and laughs.
Two years ago, “she couldn’t speak to us, or follow direction,” says Abigail’s mother, Jill Tappert. “She was covered in bruises for years because we couldn’t get her to stop hurting herself.”
Abigail would hit, and throw herself against walls in tantrums because she is autistic. She has trouble communicating, learning and interacting with people, because her brain hasn’t developed normally. One in every 110 children has some degree of autism.
But the little girl from Boulder has improved with intense therapy – expensive treatment that insurance companies refused to cover until a new state law required them to do so last summer. Now, they must provide up to $34,000 a year in therapy for autistic children through age 8, and $12,000 a year for ages 9 to 18.
Three-year-old Aiden Robles of Aurora just started receiving intense therapy, as his parents could not pay for it until the new insurance law. In two months, he’s moved from one word at a time to short sentences.
On a recent day, therapist Alli Guzzo prompted him to ask for a particular toy. Aiden was slow and careful: “I…need…yellow!” Guzzo praised him:
“Good job!” and Aiden responded: “Thank you!”
Tappert, a non-practicing attorney, was pivotal in the campaign by families of autistic children to win insurance coverage. The high cost of therapy made winning the battle important for both sides.
Ben Price with the Colorado Association of Health Plans said his group opposed the bill because any added coverage raises the price of health insurance. That argument swayed many legislators.
Cameron Lewis of the state Division of Insurance said it’s still too early to know how much insurance rates may have risen.
But if all 9,000 eligible children use the coverage to the fullest, the total cost could reach $200 million.
Betty Lehman, executive director of the Colorado Autism Society, said her group argued that insurance premiums would rise only 1 percent. The group also said it’s much wiser and less expensive to treat children early.
“If we don’t help these kids when they’re young, they will be a burden to our taxpayers when they are adults, and need full-time care,” Lehman says.
Early therapy can help seriously autistic children grow up to hold a job. The care can cut the lifetime cost of care can be cut from $3.5 million to $2 million, Tappert said.
“What makes me mad,” says Tappert, “ is that someone could choose to go out and skydive, crack open his head, and insurance would cover the cost of treatment, of rehabilitation, for however long it takes,” she says.
“My daughter was born with autism, and that wasn’t covered. Autism was often specifically excluded in policies — the only medical disorder excluded. It was discrimination.”
The families saw the campaign turn their way when they told their compelling stories to their own district legislators. Nearly every lawmaker heard from a constituent with an autistic child.
“We have contact information for families with autism, so we knew where they lived, and we knew what districts they matched,” Lehman says.
“Those families went to work.”
Sen. Shawn Mitchell, R-Broomfield, was one of the most outspoken opponents of the legislation. He declined to talk about his reasons now.
The Senate sponsor, Brandon Schaffer, D-Longmont, recalls the bill signing. A father of two came up to him, crying, and said, “You have no idea what this means to us.”
“It really was amazing,” Lehman says. “Families were crying, hugging each other, clapping. My own autistic son was hugging me. This was the result of a true grassroots movement.”
Now, when she gets tearful phone calls from families who have learned they have an autistic child, she often has good news. If their policy is governed by Colorado law, their child’s treatment is covered.
“Before this law, your child’s physician would say, ‘The bad news is that your child has autism,’” says Lehman, who has a 22-year-old autistic son of her own. “Then he’d say, ‘But the good news is that it’s treatable.’ And finally, he’d say, ‘But the bad news is you can’t afford that treatment.’”
In therapy, kids learn how to learn. “If you have a child who can’t imitate you or understand what you’re saying, they won’t be able to fit into society,” Lehman explained. Autistic children also need to learn social skills, and may need occupational therapy to work on balance and a sense of self in space, she said.
“They often have touch or smell aversion and problems with speech, motor skills, vision and hearing,” she says. “All the things we take for granted, these kids struggle with.”
It took her own son two years, she says, to learn to climb a ladder. “Then we had to teach him how not to jump off that ladder,” she said.
Many difficulties remain in securing the new coverage. The biggest problem is a lack of providers, Tappert said. One Colorado mother is driving her two autistic children two hours a day to see the only therapist covered by her plan.
Of her own daughter, Tappert says she’s been through the worst. “She has no bruises now, and she can speak. She can answer me when I ask her a question.”
She calls the girl over, looks her in the eye and asks: “What’s this toy called?”
In the silence that fills the room, Abigail’s grandparents and her younger brother pause from their activities to look toward the girl. Finally, Abigail grins and says, “Little Pet Shop.”
Tappert laughs and says, “That’s right.”
“This is proof that all the hard work is paying off,” Tappert says, “She’s engaged, can communicate, and is generally happy.”
Abigail Tappert now works hard at cognitive behavioral therapy and her social skills therapy first thing in the morning. Later, she moves on to vision therapy and usually also speech therapy.
“We can’t have this great expense of adults who have no job skills,” says Tappert. Abigail will have those skills. “She will be a taxpayer,” says Tappert as her eyes well up with tears.
“She will always be challenged by autism, no doubt, and has years of hard work ahead. But, she is verbal now. It has been difficult, but we are a success story — treatment is effective. Now we smile.”