The Burch family from Fredericksburg was one of several families that participated in House Republicans' press conference last week announcing legislation to lift the age cap on autism coverage in the state. (Photo courtesy of April Burch)

Mark Llobell has put countless miles on his car driving between Virginia Beach and Richmond since his grandson, Mark Llobell III, was diagnosed with autism at age 2.

The older Llobell has spent 12 years lobbying lawmakers to expand autism coverage. This year, he’s closer than he’s ever been to making sure people with autism at any age have access to support services and treatment covered by insurance policies.

Right now, Virginia only requires insurance companies to cover treatment and services for autism through age 10. The cap used to be 6 years old, which Llobell convinced lawmakers to raise to 10 years old in 2015.

Each time the cap moved up, the younger Mark almost immediately aged out.

“It’s been a long journey,” Mark Llobell said. “I’ve never really done this for (Mark), it’s for other families across Virginia.”

Del. Bob Thomas, R- Stafford, is carrying a bill to lift the age cap. He estimated lifting the cap would help 10,000 families.

Sen. Jill Vogel, R-Fauquier, has a similar bill in the Senate that would cap coverage at 18. Both bills cap the annual amount of coverage at $35,000.

“As a father of eight children, I know how important it is to ensure all of our children have access to health care,” Thomas said last week at a news conference announcing the legislation. “For children and adults diagnosed with autism, it’s much more important.”

It’s been an uphill battle to convince lawmakers of the importance of making autism services more accessible, Llobell said.

In the beginning, some doubted how effective some of the uncovered services were. Then, it became a financial concern.

Last year, a bill from Vogel was left in the House Appropriations committee. Llobell was at that meeting and was approached by Chairman Del. Chris Jones, R-Suffolk, after the meeting. 

Jones invited Llobell to meet with him during in between sessions to talk more about how to get the bill passed.

“Through the process we were able to see with the data that was given to us that it does make a big difference to treat … after the age of 10,” Jones said at the news conference. “The therapy is much less intensive but no less important for this population.”

In the past, lobbyists for insurance companies have argued that Applied Behavioral Analysis therapy — the “Cadillac of services,” for people with autism, Llobell said — isn’t a medical service and shouldn’t be covered by health insurance policies since it’s a service offered in some schools.

Doug Gray, executive director of the Virginia Association of Health Plans, said the organization isn’t actively opposing this year’s bill. It’s an extension of a policy that already exists, he said, and ultimately, the cost of implementing it is passed on to people who purchase insurance.

It’s estimated to cost $237,000 to offer the proposed coverage for state employee plans, according to the Department of Human Resource Management.

“Watching every dollar the commonwealth spends is one of my responsibilities that I take very seriously,” Jones said in a statement. “But compared to the services that will now be available to the autism community and to the families who care for an autistic loved one — the cost is worth it.”

A range of services required

Early intervention is critical to offsetting more intensive support that might be required later in life, said Staci Carr, a doctor at Virginia Commonwealth University’s Autism Center for Excellence.

Autism is a spectrum disorder, so not every person with an autism diagnosis needs the same thing, Carr said. Some people may need lifelong therapies and services while others may be able to stop after a few years. But the current state cutoff for autism coverage is a precarious time for most people with the disorder.

“When a person hits those preteen ages, there’s also an increase in hormonal differences,” Carr said. “When puberty hits, we can also see a spike in behavior and an increase in depression and anxiety. When the transition to middle school happens — for all kids it can be very challenging — for students with autism, it can be especially difficult.”

And support services can be very expensive. Llobell said he’s spent $250,000 over five years providing treatments and therapies for his grandson. He used to need 40 hours of therapy a week and now needs only 10 to 15 hours. In a few years, Llobell think he may not need any therapy.

The symptoms of autism depend on individuals, Carr said, and so will their support plans. Some children are able to receive all the help they need at school, while others have therapy sessions every day.

The Burch family, from Fredericksburg, includes Daniel and Hunter who both have autism. If the family continues to pay for therapy for the boys without help from insurance, April Burch predicts the family will have to sell their home and move. (Photo courtesy of April Burch)

April Burch in Fredericksburg has two sons with autism, Hunter, 10, and Daniel, 7. Daniel was nonverbal until about two years ago and is still in therapy to catch up, Burch said. Hunter struggles socially, but Burch thinks he may be able to stop therapy sometime in his teens.

Outside of expensive therapy sessions, the Burches also spend money on sensory objects for the kids like weighted blankets and noise-cancelling headphones.

Both of her sons are in applied behavior analysis therapy, which can include hours-long sessions.

If Thomas’ bill doesn’t pass, Burch anticipates the family will have to move or sell their home.

“We either stop services or make huge financial sacrifices to keep them in services,” she said.

Llobell said that’s the sort of situation he hopes families can avoid if the age cap is lifted.

“If you know the services are out there and you don’t have the opportunity to provide them for them, that would be heartbreaking,” he said.