A three-year lesson in democracy and autism in Missouri closed in twenty-five minutes on May 12 when HB 1311 passed the Missouri Senate after passing in the House, minutes prior. The bill, which will require health insurance coverage of the diagnosis and treatment of autism, then went to the Governor for execution into law. After the filing of countless bills over the last several years that received the attention and collective efforts of Missouri’s autism community, companion bills in the State Senate and House finally allowed Missouri to go “green” in 2010.
I entered this process in the spring of 2008 when I contacted a state representative and a state senator to consider filing bills. In both cases, a bill was filed. I was thrilled and I thought the proverbial train had finally left the station! However, I learned all too quickly that I had no control over the train and nobody in the legislature seemed to care about my train. 2008 proved to be more of a coalition-building year. The legislature adjourned in May 2008 without action on the bills. Even so, I learned that there were countless families and organizations in the autism community who supported this autism insurance reform legislation, but had never collaborated on such a matter.
With the introduction of Lorri Unumb of Autism Speaks to the process, a group of ten or twelve people gathered in the summer of 2008 to draft a bill that everyone could support. The draft bill went through countless revisions to reflect the input of the autism community in Missouri. The result of this collaboration led to the filing of bills in the House and Senate in 2009. These bills were heard in House and Senate committees and the autism community began and sustained a more concerted and coordinated effort. Even though the 2009 bills did not see passage, awareness was raised at the state capitol about the issue and need for autism insurance reform for families in Missouri.
Our coalition remained strong and resilient as we gathered again in the summer of 2009 to modify bill that had been introduced in the previous legislative session. With another year of experience in our pockets, along with bills filed in both chambers that had strong support from Republicans and Democrats, as well as strong medical, legal and moral arguments that lent support to each word of the bills, we went to work as a community to prepare for the 2010 session. From all corners of the state, we worked together on weekly phone calls, attended hearings as a group and pushed for passage as one community voice.
With the amount of awareness that had been raised during the last two years in the legislature and with the strong vocal support of the governor, we thought we might see passage of our bill as early as the first half of the 2010 legislative session. When this deadline passed, our coalition continued to fight for passage. On the third to last day of the session we finally watched our bill pass the legislature. While passage of the bill brings insurance coverage to the families that need it for diagnosing and treating autism, Missouri autism community benefited from this experience in a way that is even more significant. We have formed a coalition of families and organizations that have learned how to work together to bring about an answer to a community problem. With passage of autism insurance reform behind us, we are a community of friends and colleagues who can now work together in the future to achieve other objectives that will be of importance to families and people with autism. This is the lasting legacy of our efforts that can span generations, just as the new autism insurance reform bill will help generations of children with autism to come.
To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org
This past April, for the first time in my life I learned what it truly means to live in a democracy. Since the start of 2010, our group of Autism Speaks volunteers had been in our state capitol for months working diligently with members of various House and Senate committees on a matter near and dear to our hearts – autism insurance reform, because we believed Kentucky’s children with autism deserved better.
After months spent in the capitol’s hallowed halls talking to legislators, testifying at hearings, and countering the insurance industry’s iron grip on insurance policy in the Commonwealth of Kentucky, we emerged on March 16 with a unanimous vote on the House floor in favor of our bill, House Bill 159. That victory was sweetened when, 16 days later, the Senate also voted unanimously to pass HB 159!
Until this experience, I held an image of all special interest lobbyists and politicians in an unfavorable light, as many of us do. I am a veteran reader of John Grisham novels about big tobacco, the pharmaceutical industry, and, of course, the insurance company lobbyists who, in these novels, try to manipulate politicians. These were the horrible images that immediately came to my mind. However, after many months of working closely with a special interest lobbyist, I became very aware that they are not all bad men, out to dupe the public or our politicians into passing unfavorable laws. In our case, this image could not have been more wrong. Our lobbyist, Bart Baldwin, spent countless hours with us, guiding us through the delicate, chess-like maneuvers of professional politics. He laughed off our rookie mistakes and, in the same way we teach our children, he modeled appropriate behavior and language for us to use in our conversations about autism insurance reform with members of the state legislature. Bart is a true defender of the rights of our children with autism, as are so many other lobbyists just like him, who work for the passage of good public policy and the betterment of all society.
We were also fortunate to have had two excellent champions for our cause in the House – Representative Jeff Greer and Representative Scott Brinkman. While neither of these men has had to experience the financial drain that a full-time applied behavior analysis (ABA) therapy program puts on a family’s finances, Representative Brinkman is the father of a grown son with autism and did engage in other costly treatments. Both Representatives had compassion for our issue and moved forward with fervor on behalf of our “insurance is the answer” solution.
Thank you, Bart Baldwin, Representative Greer and Representative Brinkman! And take that, John Grisham!
To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda please visit www.autismvotes.org.
In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our second item, Autism “Costs” Society, is from Autism Speaks’ Top 10 Autism Research Events of 2007.
Researchers in 2007 made several strides in forcing the community-at-large to face the magnitude of managing the disorder. The Centers for Disease Control and Prevention (CDC) released the first nationwide prevalence survey and the first state-wide epidemiological record- based surveys using standardized approaches, making the whole country shockingly aware that 1:150 children in America has an autism diagnosis. These studies confirmed that autism can no longer be thought of as a disorder that touches only a few people.
The suffering this causes is not easy to comprehend nor to quantify. Nonetheless, a Harvard economist managed to calculate that each year autism costs society a staggering $35 billion, and that it costs more than $3 million to care for an individual with autism over their lifetime due to their special needs. Surprisingly, adult care, not child care or early intervention and treatment, accounts for most of the costs.
As families continue to struggle to gain insurance coverage, documentation of the severity of this financial burden across the lifespan will go a long way to making our voices heard, informing policy-makers, and assisting families in planning for their future. Because of data such as this, insurance reform bills are now under way or under development in 14 states.
Update since this story was first run: Through Autism Speaks’ efforts, fifteen states – Arizona, Colorado, Connecticut, Florida, Illinois, Indiana, Louisiana, Montana, Nevada, New Jersey, New Mexico, Pennsylvania, South Carolina, Texas, and Wisconsin – have enacted autism insurance reform laws. Several other state legislatures are considering measures in 2010 to end the discrimination people with autism and their families have long endured. Visit AutismVotes.org to find out about action being taken in your state.