Judith Ursitti, director of state government affairs for Autism Speaks, discussed what drew her to autism advocacy and the health care reforms her group is pushing for at a Tuesday Master’s Tea..
Eight students gathered in the Pierson Master’s House Tuesday afternoon to hear Ursitti speak about her experiences as a mother of two autistic children and her work with Autism Speaks, an autism advocacy group based in New York City. Though little is known about the causes of autism, the disorder affects one in 88 children, according to a March 30 report released by the Center for Disease Control and Prevention. Ursitti focused her discussion on the challenges faced by the families of autistic individuals — particularly in finding health coverage — and recent developments in government policies regarding the disorder.
Ursitti became involved with autism advocacy when her son, Jack, was diagnosed with the disorder at age 2 after a routine checkup in 2005. The diagnosis was distressing, Ursitti said, and she at first denied that her son’s delayed speech — one early sign of autism, along with aversion to social interaction — indicated that he had the disorder.
“I remember vividly the pediatrician asking me, ‘How many two-word phrases does he have?'” she said. “And he didn’t have any. I just assumed he was a late talker.”
Cases of autism range in severity, making them broadly known as autism spectrum disorders, and Ursitti said her son was diagnosed with a severe type of autism that requires extensive therapy. Her pediatrician initially suggested the family try applied behavior analysis, a type of therapy for autistic behaviors that, at the time, was not covered by any insurance plans. Her pediatrician also suggested the family turn to its local school district in Southlake, Texas, an affluent city with a highly-ranked school system, for support.
Ursitti said she consulted with the school district, which offered to put Jack in a preschool classroom with other students — assuming that he would learn, academically and socially, from them. But Ursitti said she argued that Jack had been entirely nonverbal as a toddler and possessed minimal communication skills, and thus would not be able to attend preschool without attentive care and support, which the school refused to provide.
“I asked, ‘What if he just ran out the door?’ and the teachers responded that they would put Vaseline on all the doors to prevent that,” Ursitti said. “It was absurd.”
With few other resources available, Ursitti began paying for applied behavior analysis treatments out of pocket. Insurance providers would not cover autism treatment, Ursitti said, because it classified as habilitative services — care designed to help patients acquire skills they never previously possessed. By contrast, rehabilitative care helps patients recover skills they have lost.
At the time, Ursitti said most insurance companies only covered rehabilitative care, which she felt was unjust.
“Only people with large bank accounts can care for their kids with autism,” she said. “I asked my husband how I could fix it, and he said, ‘You need a federal mandate.'”
Shortly after, Ursitti began working with advocates in Texas to persuade Gov. Rick Perry to sign into law an early intervention bill that would cover diagnosis and treatment of early autism. Perry signed the bill in 2007. Several days earlier, the South Carolina legislature had overruled then-Gov. Mark Sanford’s veto to pass a similar bill.
Ursitti joined Autism Speaks in 2008 and began focusing on federal legislation, in particular dealing with insurance coverage. Through Autism Speaks, Ursitti said she drafts legislation that requires insurance policies to cover early autism diagnosis and treatment, and then works to persuade state governments to pass the proposed legislation.
More than 30 states currently have laws that mandate such coverage. Still, many of those mandates place an age cap on coverage, sometimes as early as age 6.
Ursitti noted that higher-functioning children with autism spectrum disorders are often not diagnosed until later, such as Ursitti’s daughter Amy, who was diagnosed with Asperger’s syndrome at age 8. Ursitti said she is pushing for state governments to remove the caps entirely, as “autism does not end at a certain age.”
“I have a piece of legislation [for Vermont] I’ve been working on that expands the age to 21,” she said. “My eventual goal is no age gaps.”
Emily Anderberg ’13, a psychology major who plans to focus her career on autism research, said she enjoyed “hearing different perspectives on autism and advocacy” at the talk.
The event was organized by Yale for Autism Awareness as part of its Autism Awareness week at Yale, which ends Thursday.