Parents Turn to States for Autism Help

Image courtesy of
the Autism Society of America

Especially visible during April, which is Autism Awareness Month, the autism awareness ribbon is made up of puzzle pieces to symbolize the different disorders that fall under the broad classification of autism and the puzzling nature of the disorder.
(UPDATED 4 p.m. EDT, Thursday May 1) Jeff Sell, a Texas trial lawyer with four children, recently became a lobbyist for the Maryland-based Autism Society of America , a job that has him crisscrossing the country to persuade state lawmakers to make life easier for people with the little-understood developmental disability.
 
He shut down his law firm, which had pursued legal cases linking autism with vaccines. But rather than move to Maryland, Sell is staying in Texas so his twin 13-year-old sons can continue to receive state-financed treatment for their autism . If he moves, Sell said, his sons would be on a years-long waiting list for therapy that costs as much as $60,000 a year.
 
"I live in Texas basically because it's economically feasible for me to survive in Texas," Sell said.
 
One of the toughest problems facing autism patients, their families and policymakers is paying for treatment. Families are increasingly relying on states to help them cope with the financial, medical and educational needs.
 
Governors and lawmakers have tried to ease those costs with two different approaches: by requiring private insurers to pick up the tab for more services or by creating or expanding public health programs, such as Medicaid, to cover autism treatment.
 
At the start of the year, 12 states already had laws requiring private health insurers to cover autism-related services, and Arizona joined the group when Gov. Janet Napolitano (D) signed her state's new law in March. Twelve other states have considered or are still debating similar proposals this year, according to a tally by StateScape , a bill-tracking service.
 
On the public funding side, at least five states - Colorado, Indiana, Maryland, South Carolina and Wisconsin - have set up Medicaid programs specifically for kids with autism. Several other states provide services to autism patients through Medicaid efforts directed at people with developmental disabilities.
 
Autism spectrum disorders, the umbrella term for several related brain disorders that affect people's ability to communicate and relate to others, are becoming increasingly common. One federal count estimates the disorders could affect as many as one in 150 American 8-year-olds.
 
The challenge for those dealing with the affliction is there is no consensus among scientists and doctors on what causes autism, although genetics appears to play a role. Many people have suspected vaccines are at fault, but scientific studies haven't found a connection.
 
  AUTISM
Source: The Autism Society of America , The National Institutes of Health and The Centers for Disease Control and Prevention
The distinctions among the several types of autism spectrum disorders are hazy, and there's no one way to treat the disorders. But the medical community does agree that early detection is extremely important for improving a patient's condition and that effective treatment can be time-consuming and expensive.
 
Health insurers often cover autism treatments, but they may not pay for the full range of therapies or they may impose limits on coverage.
 
Advocates for autistic patients say pushing private insurers for coverage is at the top of their state-level lobbying priorities, and one insurance industry expert said it's "by far one of the most popular" ideas for new health insurance regulations.
 
Both the private and public funding approaches have serious limitations.
 
"It becomes increasingly difficult to start drawing lines as to what care should be the responsibility of a health insurer and what care should be the responsibility of parents and what care should be the responsibility of school systems," said J.P. Wieske, the director for state affairs at the Council for Affordable Health Insurance , an insurance industry group.
 
The insurance carriers oppose new rules on health insurance, which, they point out, don't apply to a big chunk of the insurance market. 
States have only limited power to regulate medical coverage, because they oversee only insurance sold to small companies and individuals. Health insurance for large companies is regulated by the federal government.
 
For those seeking public assistance, several states that run specially tailored Medicaid programs have long waiting lists of families seeking services. That's especially troubling for patients with autism spectrum disorders, experts say, because critical early treatment is delayed.
 
Because there's not enough money to pay for all the potential patients, the reach of publicly funded programs is limited. Wisconsin, for example, currently serves 1,801 children with in-home care. Another 384 kids are on the waiting list.
 
Stephanie Marquis, a spokeswoman for the Department of Health and Family Services , which runs the program, said Wisconsin's program is especially generous because it allows kids to get services regardless of their families' income. Children must be signed up by the age of 8 to get intense services, but then they can continue to receive ongoing treatment until they reach 21.
 
For two years, Wisconsin Gov. Jim Doyle (D) has pushed unsuccessfully to require health insurance companies to pay for autism treatment.
 
"Private insurance companies are key to helping ensure that parents get the care they need for their children - it's not something the state can do alone," Marquis said in an e-mail message.
 
Doyle's plan passed the state's Democratic-controlled Senate but ran into trouble in the Republican-controlled Assembly, which had a vastly different idea of how to serve autism patients. The disagreement prevented any autism bill from passing.
 
One of the lawmakers leading the GOP efforts was Rep. Scott Newcomer , who has a 13-year-old daughter with autism. Newcomer and Assembly Republicans said the state should dedicate roughly $6 million more to the Medicaid autism program to eliminate the waiting list.
 
"The most important aspect of my bill was to take care of all those kids on the waiting list. That's what we had to do now because nobody had the perfect solution for the long term," Newcomer said.
 
While insurance and public health programs are the chief concerns for autism advocates now, several other issues are emerging:
 
  • Sell, the Autism Society lobbyist, predicted the "next hotbed" would be in education. Federal law requires schools and parents to agree to yearly plans for special education students, but Texas, for example, specifies about a dozen additional topics that must be addressed for students with autism.
  • Good guidelines haven't been drafted to oversee licensing and training of autism therapists. As states and insurers start paying for more services, they may demand new licensing rules or, at least, accepted standards, said Dan Schwartzer, executive vice president of Wisconsin Association of Health Underwriters .
  • State services for autism are scattered across agencies, which is the motivation behind a new Alabama effort to coordinate efforts by universities, state agencies and private providers.
  • Several states, including Indiana, are trying to ensure that people with autism can get help from local doctors, therapists and teachers. That means training those providers or recruiting them in every corner of the state.
Clarification: The original version of this story relied on the Council for Affordable Health Insurance's tally of states requiring private insurers to cover treatments for autism. That tally did not include Texas' rule for carriers covering children between 2 and 6. The story and graphic now include Texas in that list.
Contact Daniel C. Vock at dvock@stateline.org .


Original Stateline Story