Parents, advocates say autism insurance mandate falls short

Angela and Tristan Timpone in the dining room of their Montpelier home. VTD/Josh Larkin

On Oct. 2, Lisa Howarth’s daughter, Stella, celebrated her sixth birthday.

Stella has been diagnosed with autism, and she uses a communication device instead of speaking.

For Stella, turning 6 brought a harsh dose of reality.

A law passed in Vermont requires insurance companies to cover the diagnosis and treatment of autism spectrum disorders for children 18 months old to 6 years. The mandate was originally supposed to go into effect in July 2011, but the state postponed implementation until Oct. 1. This left Stella with one day to receive the benefits of coverage through her parents’ private insurance. That day was a Saturday when offices were closed.

The recent roadblock to private insurance coverage is one of many the Howarths have encountered.

Stella’s communication device, for example, cost around $8,000. Private insurance denied coverage. Medicaid eventually paid for it, but only after a fight.

The ordeal added to the stress her parents are already under as they struggle to provide around the clock attention for their daughter.

“From the time we get up to the time we go to bed, it’s all about Stella,” said Lisa Howarth.

Lisa, who is a teacher, and her husband, Daniel, try to ensure Stella gets enough speech therapy and emotional support. The really frustrating thing, Lisa Howarth said, is the notion that one day, under the law, services for Stella would be covered and on another they wouldn’t.

“You’re giving a child a voice, and you’re not going to pay for it,” Lisa said.

Stella qualifies for assistance under a waiver that enables severely disabled children and adults to be eligible for Medicaid based on the individual’s income and assets alone.

While the Howarths are grateful for the assistance Medicaid provides, Lisa said services have been cut back. As Stella grew up, she was permitted fewer therapy sessions.

“People are saying ‘she’s old enough; she’s had enough treatment; you can replicate the services at home,’” Howarth said.

Stella is one of hundreds of children in Vermont with an autism spectrum disorder — ASD as it is commonly known. These complex disorders manifest themselves in varying degrees, from minor difficulties in social interaction and communication to more severe problems. According to the U.S. Centers for Disease Control and Prevention, around one in 110 children fall on the autism spectrum. About one in 70 boys in the United States is diagnosed with autism.

Under Vermont’s current law, Stella’s private insurance company does not have to cover specialized services to treat her disorder.

A new bill, championed by Progressive Sen. Anthony Pollina would lift the age cap for mandatory private insurance coverage.

“The basic thrust is to require private insurance companies to cover necessary autism therapies for people who need them regardless of their age,” Pollina said. “I think the question for us as Vermonters is what’s taking us so long to do this?”

According to the advocacy Web site autismvotes.org, 29 states have enacted autism insurance reform laws mandating some type of private insurance coverage.

Some states, like Massachusetts, have no age limit or dollar amount for what private insurance has to cover. New York has no age limit, but it puts a cap on the amount of money insurance companies have to pay out for applied behavioral analysis. Vermont has one of the lowest age limit cutoffs under its current law, but it doesn’t cap coverage. Vermont is also the only state to include Medicaid coverage in its private insurance coverage law.

The low age limit, Pollina says, doesn’t make sense.

“There’s clearly in practice a bias against people affected by autism without a doubt,” he said. “If I developed a brain tumor and I’m only going to live six months, insurance covers it, but it won’t cover services for a kid with autism who has the chance to live a long, productive life.”

While Pollina says early intervention is key, the benefit of autism therapy is not really evident unless it goes beyond age 6, he said.

Sen. Dick McCormack, D-Windsor, is a co-sponsor of Pollina’s bill. McCormack is a self-proclaimed “curmudgeon” who says he is skeptical of so-called behavioral issues in children. Autism, he says, is different — therapy really helps this diagnosable disorder.

“The alienation from the community is a tragedy, and we know that it can be mitigated, that it can be addressed,” he said. “To help a person who’s autistic get to that level of functionality is a very important thing to do.”

Angela Timpone agrees. Timpone is the parent of a 9-year-old boy with autism. Her son, Tristan, is in fourth grade and receives the majority of his therapy at school through an individualized education program. Tristan was nonverbal until he was 4½ years old. Now, he is a smiling but seemingly shy kid.

Tristan still needs help with social skills training, Timpone said, over the next two years before he enters middle school. Tristan is too old to get private insurance coverage for his therapies under the Vermont mandate. Years ago his parents dropped private insurance to get Medicaid coverage for their son.

Under what is commonly called a Katie Beckett waiver, Tristan is eligible for coverage under Medicaid regardless of his parents’ income. Medicaid covers some services, but with reimbursement from Medicaid chronically low in Vermont, parents struggle to find providers who will take it.

For now, Tristan receives most of his therapy in school, which can be disruptive, Timpone said.

“All the other kids are doing math and halfway through you get pulled out to work on reading or speech,” Timpone said.

If private insurance covered some of these services, Timpone said, he could have a more regular school day and undergo therapy paid for by insurance after school.

“Last year we had to decide that Tristan didn’t learn cursive so he could get social skills training,” Timpone said.

Timpone said she is also curious about the cost shift from private insurance to Medicaid since it is common practice for parents of children with autism to drop private insurance coverage because it will not pay for autism therapies.

While advocates cheer expansion of private insurance coverage, insurance companies opposed the 2010 law and Pollina’s new bill.

The problem, says Gary Hughes, director of media relations for MVP Health Care, is the expense of the treatments, especially with no dollar limit. He said the costs will drive up premiums for all policyholders, inevitably causing some of them to drop coverage.

“There’s always a push and pull between what should be a covered benefit and what it would do in terms of overall cost of coverage,” Hughes said. “The question is: Do you reach a price point where some drop coverage and have no coverage?”

The current mandate in Vermont would raise the premiums for all MVP policy holders somewhere between 0.5 percent and 1 percent. For some people, that could tip them to the point where they cannot afford already increasing premiums, and they will go without insurance. Hughes said a dollar cap on how much individuals receive could ease that burden.

Another uncertainty in autism coverage comes from a new definition of the disorder that could sharply reduce the rate at which autism is diagnosed and limit the number of people who meet the criteria for health, educational and social services. The definition is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years, according to the New York Times.

Medicaid muddies the waters

A provision in Act 127, the 2010 law that mandated private insurance coverage, requires Medicaid to fund autism therapies also.

That provision has created a roadblock to implementation based on a study that shows it would cost $10 million in net Medicaid expenditures to fund these services for the 183 children who qualify for Medicaid in Vermont.

In his annual budget address, Gov. Peter Shumlin proposed postponing these payments to save money.

Autism advocates have questioned the administration’s estimate of the $10 million line item.

The number comes from a 2011 report to the Legislature by the Agency of Human Services, Department of Education and Agency of Administration.

Suzanne Santarcangelo, director of health care operations for the Vermont Agency of Human Services, said the extra $10 million is primarily due to the fact that the definitions in Act 127 for what Medicaid would cover are broader than the existing mandate.

The report, Santarcangelo said, calculated the cost for applied behavioral analysis based on the Early Intensive Behavioral Intervention model that is most researched.

It is based on 40 hours of intensive intervention each week. The report estimates future savings due to early intervention, but the state would incur costs at the outset due to expanded services.

“It’s based on the intensity of need,” Santarcangelo said. “Not all kids get full packages in the current program.”

The gist of it is that the terms and definitions for what would be covered under Medicaid are broader than those already in use, Santarcangelo said.

The Medicaid issue has brought additional confusion into the implementation process for the 2010 law. While some parents advocated for increased Medicaid coverage, other groups pushed to repeal the law in its entirety.

Judith Ursitti is the Regional Director for State Advocacy Relations for Autism Speaks, an advocacy group.

For the 183 children covered by Medicaid in Vermont, that $10 million comes out to about $70,000 per child.

Ursitti said that estimate is flat out wrong. The issue, Ursitti said, is because autism is a spectrum, some kids need intensive care while others only need limited therapy.

“It’s like saying every person in the cardiologist’s waiting room needs a heart transplant,” Ursitti said. “It’s not one size fits all.”

Ursitti said she and others are pushing for Medicaid coverage for medically necessary health care, not global comprehensive coverage under Medicaid. Ursitti said she hopes the state and advocates can come to an agreement on what are the really essential services that kids need. This will bring that $10 million number way down and allow for more coverage.

One of the problems with Medicaid currently under what is called Early Periodic Screening, Diagnosis, and Treatment — or EPSDT — is that it covers a broad range of therapies but not enough to the degree that is necessary to make a real difference in a child’s life, Ursitti said.

“The problem with Medicaid is instead of doing three or four things, they do 20,” Ursitti said. “You get a little smattering, but all the research supports intensive intervention for people with autism.”

Ursitti said a global approach from things like babysitting to horseback riding is great, but the state should focus on evidence-based medical care and cover those services to the degree that they are meaningful.

Another issue in Vermont is the low reimbursement rate for providers, which discourages many from accepting Medicaid and fails to draw experts to the state.

Sam Abel-Palmer, an attorney with the Disability Law Project at Vermont Legal Aid, said he too has doubts about the $10 million figure because it does not factor in individual necessity, meaning what does each child need.

The fundamental issue, Abel-Palmer said, is one of fairness. The Medicaid budget is strapped, he said.

“Medicaid has the entire burden of serving these kids,” he said. “You have kids who are Medicaid eligible who might be on private insurance but they don’t bother because what they need isn’t covered.”

Broader private insurance coverage could move a certain percentage of kids off Medicaid entirely, Abel-Palmer said, and take some of the burden off the government.

Postponing the Medicaid payments is not a done deal and will be factored into the budget process this legislative session. The Senate Committee on Health and Welfare plans to hear testimony this week on coverage for autism therapies.