An Open Letter to the Autism Society of North Carolina- I've Had it With You!

This morning Caroline received an e-mail from the Autism Society of North Carolina that I am sure went to a lot of families in North Carolina. In that e-mail the Autism Society of North Carolina asked the families to contact their representative in the North Carolina State House and ask them to move S676 our of the House Rules Committee. Interestingly in that e-mail, the Autism Society of North Carolina made the point that the State House has twice before passed Autism Insurance bills by very wide margin. What the Autism Society of North Carolina did not do in the e-mail, is explain that those two previous bills were very different than S676 in a large way, namely, those bills did not eliminate mental health parity protections for children on the autism spectrum. Nope, they did not mention mental health parity protection in any way. 

As I have said in prior posts, I have e-mailed the Board of Directors of the Autism Society of North Carolina to try to start a dialogue on the topic of why the Autism Society of North Carolina is so willing to trade away Charlie's mental health parity protections. The only response I received was from one member of the Board who said he agreed with me. I also have called the Autism Society of North Carolina's lobbyist to discuss the same issue. She didn't call me back. And this is a group that says they look out for North Carolina families.

After seeing the e-mail from the Autism Society of North Carolina this morning, I hit my breaking point with them. As a result, I sent the following e-mail to Tracey Sheriff, their director, also to Jen Mahan, their lobbyist. I sent my email roughly three hours before I wrote this post and not surprisingly there has been no reply. 

I'd implore any families who have reached the frustration level that I have with the Autism Society of North Carolina to do the same and e-mail the Autism Society and express your disappointment with them. Mr. Sheriff's email address is tsheriff@autismsociety-nc.org. Ms. Mahan's email address is jmahan@autismsociety-nc.org.  Ask these folks why they are so willing to trade our kids rights. My only guess is they are willing to do so because they will see the benefit of the insurance payments while not having to deal with the ramifications of not having mental health parity rights. While you are sending e-mails, also sent e-mails to your Representative and Senators asking them to pass meaningful autism insurance reform that will also protect our children's rights under mental health parity law rather than S676 which will eliminate those rights.

My e-mail was a follows:

I am the father of a 4 year old boy on the autism spectrum. I have seen the e-mail that your organization has sent out this morning imploring N.C. families to contact their representatives and ask that the House move on S676. While I appreciate that we share a common goal in making autism insurance reform happen in North Carolina, we differ with respect to our views on S676. I have called Ms. Mahan and written your Board of Directors asking that we open a dialogue on why the Autism Society of North Carolina is accepting proposed legislation that will eliminate children like my child’s rights under Mental Health Parity Law. The only response that I received was an e-mail from one of your board members who agreed with my concerns. This leads me to ask how you are holding yourself out to be an organization protecting the rights of North Carolina autism families when you refuse to even acknowledge the concerns of those families? Trust me, as I know you are aware, there are many many families in North Carolina that feel the same way as I do on this point.

Quite frankly I think it is downright irresponsible that you sent out your email with talking points but refused to acknowledge the elimination of these rights. Indeed it appears to me that rather than informing the families to whom you are sending the e-mail about the full impact of the legislation you are asking them to push, you are trying to “hide the ball” and not let these families know that their children will lose rights should this legislation be passed.

I understand that your organization is a provider organization that will benefit from S676 in its current form because you will obtain payments from the insurance companies when this coverage is in place.  However, you will not be impacted by the loss of mental health parity rights. No, that impact will be felt by children like mine who are already fighting an uphill battle. 

I am sure this e-mail has an angry tone and this is not unintentional though I would have hoped that I would have never gotten to the point where I would be angry about this. In my communications with members of the General Assembly who are refusing to make the simple changes to S676 that would preserve mental health parity rights, those members fall back on the line “ASNC supports us so why don’t you.” Therefore, it is your support for this legislation this is actually helping our children to lose their rights.  If you really do care about families like mine, you should be appalled by that fact.

I assume your response to my concerns is that “giving up these rights is the only way legislation will happen.” Quite frankly, that is absolutely untrue. We have been making progress on good legislation over the past couple of years and I believe meaningful change would have occurred even without your agreement to allow our children on the spectrum to lose rights while gaining some others. I ask, “Have you considered why Blue Cross is requiring these rights to be given up?” Do you truly think that it’s just because they think it is necessary to ensure caps are enforceable? I hope not because that certainly is not the case. You need not look further than all the other states that have caps but don’t have an elimination of mental health parity to see that giving up mental health parity rights is not necessary.

Again, it was never my intention to become angry about this process but it has gotten to the point where it is unavoidable as a result of your organization’s willingness to discuss or even attempt to preserve mental health parity rights. It’s not too late for you to change that position. If you don’t you should really reconsider holding yourself out as an organization that helps autism families because in this case you have done much more harm than good.

Brian Pearce