Now that the North Carolina House & Senate have passed S
676 (Autism Insurance Reform), I have been reflecting on the 6-year journey for
this bill.
6+ years ago, I watched as Ryan’s Law in South Carolina was
passed and had a chance to meet its champion Lorri Unumb, after about 10
minutes of listening to Lorri I begin to believe this could be done and
everyday people can change the system and make a difference! 6 years later, I
am honored to call Lorri a friend and love the fact she works for Autism Speaks
and works to help every State pass Autism reform.
Through all of these years, I have watch different NC based
advocacy groups take the lead on Insurance Reform, but none believed it could
be done. I was always shocked and ashamed as I attended meetings that the
largest autism advocacy organization in the State always had an attitude that
“we will file a bill, but it will never pass”, year after year I heard that.
Then in January 2015, I heard that this organization (Autism Society of NC) had
gone off on their own and cut a deal with BCBS-NC for a Bill. Quickly Lorri
Unumb, myself and other Autism Speaks lobbyist studied the Bill and quickly
learned of all its problems.
In March 2015, at the State Conference for ASNC I asked the question
to the leadership of ASNC about the issues of Mental Health Parity, Small
Business coverage & ACA plan coverage and was shock that the answer was
“this is the deal we made with the BCBS and we did not understand Mental Health
Parity”.. Again, I was shocked, I asked why not asked Autism Speaks & Lorri
Unumb for help and again I got a shocking answer: “BCBS demanded we negotiate
in private or the deal is off”.
Autism Health Insurance Reform! Reflection of a journey!
I have kept asking what is the deal, and why not ask for
help; to date I have never received any answer on this question! I am guessing,
but the fact that one day after this Bill passed ASNC is advertising they are
the only in-network provider of behavior-based therapy for BCBS-NC is the
reason for the silence.
I am also saddened that after the legislation session was
over many NC House members who supported the last second amendment to save MHP
by Autism Speaks, say that they never discussed the Bill with ASNC, ASNC
lobbyist or BCBS-NC. I know ASNC advertised a big coalition of groups
supporting this bill, but general parents, educators, professors and friends
lobbied the NC House alone to save MHP and make this bad bill a little less
offensive to autism families.
I am happy North
Carolina passed some coverage, but in my opinion, the
coverage is limited. Majority of plans in NC are Federally Regulated (ERISA),
ACA Plans or Small Business, all got omitted from this Bill.
Many others and myself plan to fix these issues in the
coming years and continue to ask ASNC why they supported this Bill when many
families did not. At this time, I would like to thank many people for their
help: John Burress, Lorri Unumb, Brian Pearce, Patrick Ballantine, Keli Embler,
Apply Boyce, Stephanie Mullen, Wendy Black Miles, Ava Neyer, Selene Johnson,
Kyle Robinson & Chris Hocker.
If I missed anyone, I am sorry: there are hundreds of
families & friends that wrote letters and made phone calls.
Until later!
Bob D’Amelio
Proud parent of Nicholas, Christopher & Lindsey
https://www.facebook.com/groups/NCAdvocacy/
