TIME FOR AUTISM INSURANCE? - Yes

BY JOHN AND JENIFFER MALONEY
Published: January 4, 2009

Words will never fully describe the everyday adversity and heartbreak young families face when autism envelops a son or daughter. Like any other chronic condition, autism brings a cold realization to parents that their child's quality of life is in jeopardy if major improvements can't be made.

Scientific and medical literature present substantial evidence that early detection of autism and intervention are critical to the long-term functioning of people with autism spectrum disorders. Parents know this, and time is precious.

With hope and energy, mothers and fathers set out to get the best autism services available. For many, however, a cruel setback awaits. In Virginia, 95 percent of health insurance plans deny parents' claims because autism is excluded from coverage. The very things a pediatrician or developmental specialist recommends, such as Applied Behavioral Analysis, comprehensive occupational therapy, and intensive speech therapy, are not covered.

The message has been the same to autism parents for decades: Appeal all you want. You'll never change the decision on your own. The insurance company's lawyers are better than your letters. The treatment your child needs is available, but you will have to pay for it yourself, typically $35,000 to $50,000 a year.

This ongoing policy of discrimination by insurers has to end. The Virginia General Assembly's House Bill 1588 requires health plans to cover medically necessary treatments for autism, as prescribed by a doctor or clinical psychologist. There is an annual cap on benefits of $36,000, and the bill carefully follows treatment guidelines now in place in nine other states -- Illinois, Louisiana, Kentucky, South Carolina, Pennsylvania, Arizona, Florida, Indiana, and Texas. Offbeat alternative therapies are not covered.

In testimony before the governor's mandated benefits commission, where HB 1588 passed in November, commissioners heard parents describe the financial hardship they endured to provide treatment for their children out of pocket.

One mother told the story of having to choose which of her two autistic children would receive treatment because she could not afford to help both. Many others talked about depleting retirement accounts and college savings plans, and taking on second mortgages to get services for their kids.

This hardship has been going on for a long time.

Eleven years ago, we sought benefits for our son Jack after he was diagnosed at UVa's Kluge Center and VCU's Virginia Treatment Center for Children. Our claims were repeatedly denied by our insurer, and the opportunity for intervention was slipping away. We spent more than $150,000. We had to.

Lowand middle-income families can't afford this path. Steered to Medicaid programs, and overburdened clinics, these parents are met with waiting lists for services, untrained staff, and bureaucratic hurdles that make it practically impossible for both parents to work. A single parent often has to choose between working and getting help for a child.

The debate over HB 1588 will likely unfold as it has in other states, where health insurers and the chamber of commerce lobbyists are the opponents. They will argue anecdotally that an autism benefit will cause businesses to suspend health insurance for workers, and jeopardize the viability of companies and careers. This is hyperbole, because premium hikes have been a fact of life for 20 years, without any coverage for autism.

We doubt this one disease would materially impact health care affordability more than previous Virginia mandates, such as cancer screenings, drug and alcohol treatment, maternity stays, bone marrow transplants, breast reconstruction, or cleft palette surgery. They were mandated because they were needed, for the public good.

Young families face a much greater risk of autism than of a house fire. Both can be catastrophic financially. Both should be insured risks. Families, who wouldn't think of not insuring their homes, should insist that their health plans cover autism. The cost should be small. Autism advocates expect a premium increase of $2 per policy per month in Virginia, at the most. In Pennsylvania, the governor's estimate was $1 per policy per month.

Opponents of autism insurance will also argue that behavioral therapy, the keystone of autism care, isn't medically necessary and that it is experimental; that unlicensed practitioners will sprout up to bilk the system; and that no agency is in place to audit the quality of care. Some legislators want to pass the whole problem to the schools.

There is nothing experimental about Applied Behavioral Analysis (ABA), accepted now as the most effective treatment for autism, which is a complex and daunting brain disorder. From the surgeon general of the United States to the Amer-ican Academy of Pediatrics, ABA is regarded as the best thing you can do for kids with autism.

Behavior modification seeks to limit tantrums and outbursts, and to protect children, parents, and teachers from serious, repetitive injury -- specifically biting, scratching, hair pulling, punching, and head butts. We personally know children who have pulled half of their own hair out, or bitten through a teacher's hand, or punched their mothers' repeatedly, or jumped out of moving cars, and even a third-story window at home.

Treating autism is medically-necessary.

When aggressiveness emerges in teenagers with autism, the specter of long-term institutionalization grows very real for autism families who cannot get treatment when they need it. A managed child can spin out of control in months, and families have to give up. Other states estimate that the long-term care of a person with autism in a government facility can cost $3 million.

Business-oriented legislators may bristle at the concept of insurance mandates. They may prefer the mythical free-market response. In reality, the insurance industry has grown more monolithic, having consolidated with fewer providers and less consumer choice. Government mandates have always been the solution when insurance inequities persist.

For businesses with health plans for 25 employees or fewer, there is an exemption in HB 1588. For health plans that fall under federal guidelines, the U.S. Senate is considering a bill just like Virginia's proposal, and President-elect Obama supports it.

Virginia's law requires doctors and licensed psychologists to decide what's medically necessary, as gatekeepers, within specific boundaries of care defined in the bill. Again, theses treatments are capped annually at $36,000. Autism advocates want doctors to govern care, just like they manage other disease regimens, such as diabetes, asthma, or hypertension.

By ducking autism, insurers have avoided their fair share of a major public health crisis. Working families are going broke paying for necessary care, and school districts are absorbing the untreated autism population with staggering taxpayer costs.

Special education classrooms are overmatched by the disorder, in many localities. As seen in recent victories in Hanover and Henrico, families are suing their schools for an appropriate education, and winning awards as high as $500,000.

We all have a shared responsibility here. Autism service providers are turning away children with autism in Virginia because families cannot afford the expense without insurance. With benefits, these kids will be treated early in life, and the state's long-term burden will be lessened -- public schools will have more success -- and more children with autism will lead productive lives. This costs us about as much as a hamburger and fries per month in higher premiums.

If the legislature delays the bill, opting for more study and debate, the insurance companies will win again, and autism families across Virginia will be the losers. A 2-year-old with autism and no treatment will only be a 3-year-old with longer odds next year.
John and Jeniffer Maloney are Henrico parents. Their Web site is http://www.vaautismrally.com. They support the initiatives of Autism Speaks, and The Faison School for Autism. To reach John, call 698-5988.