Truth evaded in discussion of autism insurance coverage
By Robyne Rohde
January 30, 2009 05:29 pm
— Thomas Jefferson, co-author of the U.S. Constitution, said in 1820: “We are not afraid to follow the truth wherever it may lead, nor to tolerate any error so long as reason is left free to combat it.”
When those in power are so afraid of the truth that they abandon reason and are willing to tolerate all kinds of errors in order to hide the truth, we all suffer and as in the case of the thousands of children with autism in Oklahoma. They suffer the most.
There has been much said about autism insurance coverage in Oklahoma, so as the parent of a child on the severe end of the autism spectrum and mommy to Nicholas Rohde, the child whose name is on Senate Bill No.1 referred to as Nick’s Law, I wanted the opportunity to correct many errors that have been told to Oklahomans about Nick’s Law and hope in doing so the people of Oklahoma will “... follow the truth wherever it may lead ...”
• The root problem for families with autism is the inability to pay for services.
• Autism is a medical condition that covers a spectrum of symptoms. In some cases children are so mildly affected they may never be diagnosed or severely affected as with the case of our son, Nick. Nicholas has lost the ability to speak, suffers from severe gastrointestinal issues, eating disorders and self-injurious behaviors. Many children also suffer from seizures.
• Autism affects the entire family and 80 percent of these families end in divorce.
• More children are diagnosed with autism than all pediatric cancers, diabetes and Aids combined, according to the Centers for Disease Control and Prevention (CDC). Every one in 150 children in our state suffer from autism (using the CDC’s1992 figures) with boys affected four times more than girls. It is estimated there are 7,500 children and adults in Oklahoma with autism.
• Insurance rates will not rise or will rise minimally ($1.66 per policy holder) with the passage of Nick’s Law, per an independent actuarial study. The reason the rate is so low is that this mandate will be spread among all policy holders within a group policy risk pool.
• Without treatment, when these children become adults at 18, they will become wards of the state, with each and every taxpayer in Oklahoma picking up the tab to care for children who for all intents and purposes will not be able to communicate or perform their most basic needs. The lifetime cost to care for an untreated person with autism is $3.6 million.
• The market/demand theory for highly skilled services (e.g., Board Certified Behavior Analysts (BCBA’s), tutors, occupational, physical and speech therapists) has not and will not work in response to the demand because of the inability of the families to pay for these services.
• There hasn’t been an insurance mandate since 2001, yet insurance rates have continued to rise as have deductibles.
• The state House of Representatives conducted numerous interim studies that only focused on state services for children with autism and never addressed insurance coverage.
• In Oklahoma, insurance mandates are not the reason for the high rate of uninsured. Missouri has roughly the same insurance rates as Oklahoma, and they have more mandates than our state and Missouri’s median income and percentage of uninsured is considerably less than Oklahoma’s. Our state Legislature continues to equate higher mandates with an increase in insurance premiums. This simply isn’t true.
• The root problem for families living with autism is lack of services such as BCBA’s.
• Autism is a mental/psychological condition.
• There are churches and private organizations that will pay the 7,500 families living with autism in Oklahoma $65,000/year for the therapies their children must have to become independent adults.
• The schools in Oklahoma are equipped to provide the needed therapies these children must have to become independent adults.
• Allowing young adults to purchase mandate free group insurance policies will decrease the number of uninsured.
• Specialized autism practitioners will come to our state, even though there is no income stream available to pay these practitioners.
• Taking time for the market to respond to the demand of services is more likely to provide real hope for effective treatments.
• An autism insurance mandate will increase insurance rates.
• State-funded services will provide families with the services they need.
• Nick’s Law will increase the uninsured in Oklahoma.
After reading the above, I hope you will “follow the truth” and realize Nick’s Law is simply, the right thing to do. The misinformation that has been disseminated by our state Legislature is appalling. We are losing generations of children to this disease and while research is needed, it is more important, to address the children who can be helped now and in some cases be cured using medically necessary interventions. With treatment, our children can become independent, taxpaying adults rather than wards of the state.
In Oklahoma, the political process has become a government of "special interests," where those with the most money end up receiving the most benefit and protections of state government. The thousands of families living with autism in Oklahoma do not have millions to give to our politicians. Our lobbyists are mommies, daddies, grandparents and family members. Every cent we have is spent on our children with autism.
During this historic political year, I’ll leave you with another quote from a document that our country has used as the basis for the rights of all Americans for over 200 years, The Declaration of Independence:
“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights that among these are Life, Liberty and the pursuit of Happiness.”
Unfortunately, our forefathers didn’t realize someday we would have an epidemic of millions of children suffering from autism that our elected officials have chosen to ignore. Because of the discriminatory practices of big insurance in Oklahoma and the legislators who continue to protect special interests, rather than our children, the rights afforded to every American do not apply to children diagnosed with autism. Therefore, the unalienable rights of life, liberty and the pursuit of happiness is not an option in Oklahoma for families living with autism.
Robyne and Nicholas Rohde live in Edmond.
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