By Amanda Ladden-Stirling
Capital News Service
From Maine to California, families of children with autism are digging deep into their pockets to pay for treatments that may help their youngsters achieve normal language skills and intellectual functioning.
The families are turning to state legislatures for help: They want laws requiring health insurance companies to cover autism treatment.
This year, 27 states considered legislation to mandate autism insurance coverage. Opponents say such a mandate would increase insurance premiums, especially hurting small businesses. Some of the legislative efforts, including one in Virginia, have failed; others are awaiting their fate.
In 2001, Indiana became the first state to require private insurance companies to cover treatment for Autism Spectrum Disorders. Montana became the 10th when Gov. Brian Schweitzer signed legislation dubbed Brandon’s Bill into law on May 6.
Brandon’s Bill will mandate coverage up to $50,000 annually for a child with autism up to 8 years of age and $20,000 annually for a child between the ages of 9 and 18.
“With the passage of this legislation, Montana joins the ranks of states that have recognized the unfair and unreasonable burden being imposed on families of children with autism,” said Elizabeth Emken, vice president for government relations for Autism Speaks, an advocacy group.
Autism is a developmental neurological disability that affects one of every 150 children. While there are degrees of autism, it affects language development, intuitive thought, social interaction and the ability to communicate.
While there is no direct cause or cure for autism, many government and scientific organizations, including the U.S. surgeon general, endorse Applied Behavioral Analysis. ABA is a teaching method that uses positive reinforcement to manage Autism Spectrum Disorders.
Most states do not require private health insurance companies to cover treatment such as ABA for children with autism.
Through grassroots efforts, families affected by autism have persuaded lawmakers in many states to introduce legislation to require private insurers to cover the cost of therapy for children with autism.
For example, legislatures in Georgia, Arkansas and Virginia recently considered such proposals – and rejected them, in part because of strong opposition from chambers of commerce and insurance companies.
Health insurers maintain that ABA is an educational program, not a medical treatment; therefore, they say, it is the responsibility of school districts to provide such assistance.
A federal law – the Individuals with Disabilities Education Act – requires states to educate children with disabilities, such as autism, and provide them with instruction to suit their individualized needs.
However, parents of children with autism struggle to ensure that their youngsters receive proper instruction. And they must find money to pay for it when the public school systems fall short.
That challenge often comes at a high cost.
ABA therapy in Virginia can cost $50 an hour, according to a 2008 report by the state’s Joint Legislative Audit Review Commission. With 12 hours of recommended weekly ABA intervention, the cost amounts to about $36,000 annually.
“The real meaning behind the situation is middle-class and upper-income people spend tens of thousands of dollars trying to help their kids in early intervention. Low-income people get nothing,” said John Maloney, a father of an autistic child in Richmond, Va.
Virginia ranks 15th in the number of children with Autism Spectrum Disorders. About 7,500 students in the commonwealth have been diagnosed with the disability.
During the Virginia General Assembly’s 2009 session, legislators considered two proposals – House Bill 1588 and Senate Bill 1260 – to require private insurers to cover the diagnosis and treatment of ASD in individuals under 21, with an annual maximum benefit of $36,000.
Both bills died in committee. However, they won the support of Gov. Tim Kaine’s Mandated Benefits Commission – something the autism community did not expect, said state Delegate David Poisson, D-Sterling.
“We need to recapture that momentum so next year we can get something passed,” said Poisson, co-patron of HB 1588.
If advocates have momentum, so do opponents of autism insurance mandates. Business and insurance lobbyists argue that mandates would push up insurance premiums, putting a financial burden on small businesses in particular.
State Delegate Bob Marshall, R-Manassas, disputes that. Marshall, the chief sponsor of HB 1588, said his measure would have cost policyholders only $1.90 a month.
“You can’t expect me to believe that a small business is so close to the edge that $1.90 a month – less than a Starbucks coffee – is going to put them out of business,” Marshall said.
Abt Association Inc., a consulting firm, reached a similar conclusion when studying the issue in Pennsylvania in 2008. It said an autism insurance mandate would cause insurance premiums to go up about $1. (Pennsylvania ultimately passed a mandate law.)
“You pay a little bit now, or you pay a lot later,” said Montana state Rep. Kendall Van Dyk, D-Billings. “If these kids are not getting the therapy they need, oftentimes they become a ward of the state.”
Van Dyk, co-sponsor of Brandon’s Bill, said insurance companies in states mandating autism insurance would have called attention to any significant increases in insurance premiums, if they existed.
“In Montana, we have elected officials that stand up to the insurance companies and call them on their bluff,” Van Dyk said.
“We are going to come back in two years and show that premiums have not gone up, and these kids are getting the therapy they need.”
States that have mandated autism insurance coverage
Arizona
Florida
Illinois
Indiana
Louisiana
Montana
New Mexico
Pennsylvania
South Carolina
Texas
States that have considered or are considering such legislation
Alabama
Alaska
Arkansas
California
Colorado
Connecticut
Delaware
Georgia
Hawaii
Iowa
Kansas
Kentucky
Maine
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
Nevada
New Hampshire
New Jersey
New York
North Carolina
Ohio
Oklahoma
Oregon
Tennessee
Utah
Virginia
Washington
Washington, D.C.
West Virginia
Wisconsin
States with little or no activity on the issue
Idaho
Nebraska
North Dakota
Rhode Island
South Dakota
Vermont
Wyoming
Source: Autism Speaks, an advocacy group for families of children with autism. More details are at www.autismspeaks.org/government_affairs/
Amanda Ladden-Stirling is a journalism student at Virginia Commonwealth University.