A group of autism services advocates, led by the some of the South Carolina parents who successfully fought for an autism insurance bill in their state earlier this year, plans to hold a meeting to discuss ideas and strategies for state-level initiatives for the coming year.
Lorri Unumb, a parent and law professor who is one of the South Carolina autism services advocates, said it makes sense for citizen advocates to gather periodically to share ideas and best practices—just like industry groups do.
"The goal is to share resources, ideas, and strategies with each other," Unumb said in an e-mail message. "I am quite certain that the insurance industry is sharing strategies on how to defeat insurance legislation throughout the states. We need to learn from each other's lessons and inspire the parents and professionals in states that are just beginning the journey."
The meeting, slated for Sept. 22 in Charleston, S.C., is geared toward parents, who Unumb said are effective advocates for change at the state level. The one-day event is the second of its kind and will follow a similar agenda to a previous meeting held in February. Participants expect to share information geared to the workings of government decision-makers, such as a cost-benefit analysis of early intervention services for young children with an autism diagnosis; a review of employers and insurers who voluntarily provide coverage for Applied Behavior Analysis (ABA) and other services; and current insurance statues and Medicaid programs in the 50 states.
Unumb said she also expects to discuss how advocates can address issues and questions that come up at the state level, such as whether ABA is considered an experimental treatment (it's not) and other issues of autism awareness and grassroots political organizing.
Advocates from at least nine states, including Washington, Oregon, Arizona, Kansas, Oklahoma, New York, Minnesota, Indiana and South Carolina are expected to attend the meeting, Unumb said.
I'm not aware of a public announcement of this meeting on the web, but you can read some notes about Unumb's work in South Carolina at the blog she set up earlier this year, called South Carolina Autism Insurance Bill.
South Carolina Legislature Overrides Veto to Pass Autism Insurance Law