Chapter 10: Conclusion – What next? (Originally published July 7, 2008)
In this and other Chapters, in a Q&A format, we provide some basic information that we hope will help you answer questions you may have on various topics related to the Florida autism legislation. See Introduction and Table of Contents. In Chapter 9, we discussed whether the Florida legislature could have done more and what some legislators tried to accomplish during the 2008 legislative session. In this Chapter, we discuss what additional steps need to be taken by legislators in Florida (and in other states with autism insurance benefits mandates) to help children with autism spectrum disorders get the health care they need to live meaningful, happy lives and to have a chance to become contributing members of society.
Please keep in mind that we are answering general questions that may or may not apply to your specific circumstances. You should consult a lawyer or other specialist if you think you are entitled to benefits that you do not receive. Behavioral Lifeboat can help you do that.
Q: If the Florida autism legislation does not help as I expected, what do our legislators need to do next?
A: We must rely on the federal government in Washington to help children across the nation by implementing the Patient Protection and Affordable Care Act and the Health Care and Education Reconciliation Act (Affordable Care Act) so that health plans with mandatory coverage for children with ASDs could be made available for all families. (See “Q&A: ERISA Preemption – Basic Information. – Q: Are there any exceptions to ERISA preemption?”) If that outcome cannot be achieved, federal legislators must further amend ERISA to reduce the scope of ERISA preemption and allow states to enact legislation with broader benefits. (See Chapter 6)
Florida’s state legislators can also do more to finish the job that their predecessors started in 2008. A good place to start would be one or more bills implementing the components of House Bill 7153 (proposed by the House Select Committee on Autism and Developmental Disorders) and of House Bill 1291 (proposed by Representative Ari Porth) that were not enacted during the 2008 term. Legislation also could eliminate some of the last minute changes proposed by Speaker Rubio’s Select Committee that decreased the scope of the original version of Senate Bill 2654 and House Bill 1291 rather than implement broad-based benefits for children with developmental disabilities (Chapter 9). There are also steps our state legislators can take to increase above 14% the percentage of eligible children who will benefit from a Florida autism benefit mandate, including taking advantage of exceptions to current ERISA preemption to regulate stop-loss insurance used by self-insured plans to manage insurance risk (see Chapter 6).
Q: What did the Governor’s Task Force on Autism Spectrum Disorders accomplish? What were their recommendations?
A: Governor Crist established the Governor’s Task Force on Autism Spectrum Disorders by Executive Order on March 7, 2008. The Executive Order included the Task Force’s mandate. The Task Force delivered its final report in March 2009, to late to be submitted for consideration by the Florida legislature during the 2009 session. Recommendations included:
“Costs, Payment, and Reimbursement
“Autism spectrum disorders are tremendously expensive to individuals, families, and to the State. Maneuvering through the medical payment and reimbursement system is a significant challenge for individuals with autism and their families. To begin reducing the costs of autism in Florida, the Task Force recommends the following:
• Evaluate and increase comprehensive insurance coverage
• Ensure proper payment and reimbursement to medical, occupational, and research professionals
• Explore financial incentives to providers for the screening of autism spectrum disorders
• Collect, compile, and review cost data
• Request State agencies to compile autism-specific cost data
• Report cost data on the Statewide Autism Website
• Increase funding for Early Steps, Florida’s early intervention program
• Explore avenues to increase funding for related and endorsed organizations
• Propose a specialty license plate”
To date, the only recommendation on this list that has been implemented is the specialty license plate.
Q: What can I do to encourage change that will help children with autism spectrum disorders?
A: I expect that many Floridians will be depressed or angry when they first learn that the Florida autism legislation will not help their children, their family, or their friends as they expected. This legislation was the spark that ultimately led to the formation of Behavioral Lifeboat. We were appalled after we learned that no more than 14% of the children in Florida with autism spectrum disorders could expect to be helped by the autism insurance mandate, and that the developmental disabilities compact could reduce that percentage as low as 0%. Our state and federal legislators need to finish (and win) the battle they have only just begun to fight – the battle to give all children in the United States a realistic opportunity to lead a normal life. These children cannot help themselves and most parents do not have the resources to give their children the health care they need to live meaningful, happy lives and to have a chance to become contributing members of society.
You should not wait until your first claim is rejected to begin to understand why. If you wait, you are likely to blame only the insurance company, thinking incorrectly that the rejection reflects noncompliance. The correct answer is more likely to be that the mandate does not apply and that the employer sponsoring your plan exercised a legal right to offer more limited coverage primarily because of skyrocketing medical costs and medical insurance premiums, and ever increasing demands for quarterly profit growth.
Children in Florida with autism spectrum disorders are unlikely to get the help that they need if everyone does not take the time to understand the limitations of the Florida autism legislation and to demand that more be done. The Florida autism legislation was a very small first step. We encourage you to advocate for state and Federal legislation that will deliver critical care to more of Florida’s children with autism spectrum disorders. To be successful, the parents, families, friends, and caregivers of children in the United States with autism spectrum disorders must coordinate their efforts with the nonprofit organizations that make bold claims to support the interests of all these children. Everyone in this coalition must look past their individual needs and advocate for legislation that will benefit each of these children, not just a select few.
If you have questions, please comment in the Behavioral Lifeboat blog.
© 2008, 2011 Richard W. Probert