Suffolk family denied autism treatment by insurance plan despite mandated coverage

State and federal law require insurance companies to cover these services, but Team 12 Investigates found some health plans are exempt from these mandates.

Rachel Yonkunas

Jun 25, 2024, 9:43 PM

Updated 29 days ago


A Suffolk County family is raising awareness about a gap in health care coverage for autism treatment.
State and federal law require insurance companies to cover these services, but Team 12 Investigates found some health plans are exempt from these mandates.
Chris and Trisha Sarli stay busy as a family of five. The couple has three young children, including 3-year-old Mikey. When Mikey was 2 years old, he was diagnosed with autism.
“He was developmentally fine pretty much up until a year, and then all of a sudden we started noticing changes and he wasn't responding to his name,” said Trisha Sarli, of Holtsville.
“Subtle things and then led to the larger things, which is now he's nonverbal,” Chris Sarli explained.
The Centers for Disease Control and Prevention (CDC) recognizes Applied Behavioral Analysis—or ABA therapy—as a vital treatment for autism. Mikey was getting ABA services until he aged out of the state’s early intervention program at age three.
“It’s a behavioral therapy that works on different skillsets to get him to clap his hands, to start feeding himself,” Trisha said.
The Affordable Care Act and New York’s insurance law require insurance companies to cover ABA therapy, but the Sarlis discovered that their health plan as Suffolk County workers is in a gray area.
“When I called, I came to find out that our plan does not cover ABA services,” said Trisha. “I was shocked. Suffolk County oversees about approximately 44,000 employees. I know that I’m not the only family member affected by autism and not getting services provided.”
Suffolk County’s health plan is a grandfathered plan—meaning it kept the basic health coverage it had before the Affordable Care Act became law in 2010. Plans may lose “grandfathered” status if they make certain significant changes that reduce benefits or increase costs to consumers, such as co-payment charges or deductibles.
Among the millions of New Yorkers covered by health care, Team 12 Investigates found roughly 62,869 people have grandfathered plans.
“There are a variety of pros and cons to this and it’s not that these plans were bad,” said Lousie Norris, a health policy analyst for “By keeping it grandfathered, they didn’t have to make any significant changes. The provider network would stay the same. The coverage would stay the same.”
Staying the same may have saved money, but grandfathered plans do not have to comply with all state and federal requirements. They do not have to cover preventative care at no cost to employees. They do not have to impose out-of-pocket spending limits for in-network care.
They also do not have to provide coverage for autism treatment services like ABA therapy. This makes the treatment out of reach for many families, as demand skyrockets on Long Island.
“It can cost anywhere from $40,000 up to $100,000 a year to get those services provided for a family,” said Veronica Garcia, development and education professional with the Nassau Suffolk Autism Society of America (NSASA).
NSASA helps families find support in the autism community. The nonprofit organization offers free recreational and social events for its members.
Michele Iallonardi, executive director at NSASA, told Team 12 Investigates that the need is growing faster than ever.
“In the last year, I feel like we have doubled in our organization,” said Iallonardi. “We get a dozen or more families a week reaching out to us that want to participate in our programs. New families.”
The Sarlis are one of those new families. Because of the challenges in finding affordable treatment, Mike hasn’t had ABA therapy in almost a year.
The family continues to practice what they learned while at early intervention to try to maintain progress, but they’re hoping to find services soon.
“For us to step up and say, listen, we need these services for him because the ABA services are such a critical part at his age right now for his developmental skills,” Chris Sarli said. “And that's really what it's about.”
Since Suffolk County’s health care plan is also a self-funded plan, the county has the ability to add benefits to its coverage.
Team 12 Investigates reached out to the Suffolk County executive’s office and county legislators to see if adding ABA therapy is under consideration for its workers. County officials did not respond to News 12's requests.
Employees can petition their employers to add certain benefits to their health care plan. The organization, Autism Speaks, provides sample letters and other resources online

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