Update: Consumer Watchdog has a great summary of what was so wrong with the proposed settlement.
Yesterday I attended The California Senate Select Committee on Autism & Related Disorders, chaired by Senate President Darrell Steinberg. The hearing consisted of expert testimony on autism insurance coverage and behavioral intervention therapies.
As you might imagine, the testimonies broke down along familiar lines based on the root cause: private insurance companies don’t want to raise rates to cover the therapy and families and their advocates want (desperately-needed) relief from this absolutely awful system.
Senator Maestro
THE SENATOR STARTS HIS PERFORMANCE
I’ll give the Senator credit for effectively orchestrating the theater. He gives the impression of a passionate advocate for families while (painfully obviously) dancing the fine line of not alienating industry. When a potential settlement between industry and regulators was “announced” the Senator managed to feign surprise at the worst-kept secret in the room.
Were I 12-years-old I might have believed the act.
Ultimately the advocates and families expressed disappointment at many of the settlement terms. Most particularly a seemingly innocuous therapist licensing requirement will have the practical impact of making it difficult for families to get the treatment they need.
Heroes and Tears
If you are parents in CA with a child diagnosed on the spectrum you’re probably wondering “What does this mean for me ?”, and “What can I do?” As frustrating as this situation must be, you can rest better knowing that you have world-class talent advocating for you.
IMAGINE NICK NAYLOR ON THE SIDE OF FAMILIES
Advocates like Lorri Unumb, Kristin Jacobson, Karen Fessel, Areva Martin, Dr. Joshua Feder and Dr. Gina Green delivered compelling, fact-based testimony supported by the horrifying real-life experiences of families desperately trying to do the right thing in a structurally flawed system.
Picture a performance like Aaron Eckhart’s Nick Naylor “Thank You for Smoking” except the advocates are the good guys working for America’s families.
I found myself in admiration of their talent, dedication and expertise while trying to avoid tearing-up at their stories.
Implications for Puzzle Ribbon
The testimonies and my conversations with the advocates reinforced my key thesis of the Puzzle Ribbon Project: we can help families covered by the same insurance plan by providing the tools and information to self-organize and advocate for collective good.
Boeing Campaign Kickoff
Next week I’m going to begin work on the campaign to get an Autism benefit at Boeing. If you know any families who could benefit from this campaign, please let them know that we need to talk to them to begin working on their behalf.
