Three Things I Have Learned In Three Years Advocating For Autism Insurance Reform In North Carolina

September 29, 2015 marked a historic day for Autism Insurance Reform in North Carolina. Late in the day on September 29, 2015, after pushing the matter off twice earlier in the day, the North Carolina Senate voted 47 to 1 to concur with the version of S676 that the North Carolina House of Representatives passed the night before.  The Governor of North Carolina has apparently conveyed the message that he will sign this bill and, therefore, I expect it to become law.  As you will know from my prior posts, I am not particularly happy with the language of the bill. Specifically, I am bothered by the fact that the North Carolina statutes will include a statute that has a definition of the term mental illness that specifically excludes autism spectrum disorders.  I believe this is absolutely absurd and it shines a bad light on our state and how it views persons with special needs such as autism. I was also disturbed by comments made by a particular member of the legislature on the floor of the General Assembly when that particular person bragged about making sure that the coverage has particular caps to limit coverage.  I have no qualms with caps and would not expect them to pass a bill without them, but in my eyes, the person was essentially bragging about being the person who limited the help that special needs kids could get and, to me, that is absolutely disgusting.

With all of that said, the purpose of this post was not to be negative. On a happy note, I can say that autism families in North Carolina can now celebrate the fact there is some amount of mandated coverage for autism therapies in North Carolina. Autism Families in North Carolina can now celebrate the fact that the bill was tweaked at the last minute to add at least some amount of cover in the event that Blue Cross Blue Shield "forgets" in the future that it has publicly stated multiple times that the mental health parity carve out in the bill was only inserted to make sure the caps were enforceable and not in an effort to deny mental health parity protection in any manner.  Autism Families in North Carolina can now celebrate the fact that after years of fighting and screaming from the rooftops that our kids matter that the North Carolina General Assembly has finally listened, at least a little bit.

Keller and a friend, Samuel,
that she made along the way
in our journey in this fight.

So, what I have learned from my three years in the fight. First and foremost, I have learned what an awesome community the North Carolina Autism Families are in North Carolina. During this fight countless families have spent time going to Raleigh to knock on the doors of members of the General Assembly asking that the General Assembly make the changes we were demanding. Even more families spent time writing letters and e-mails and calling members of the General Assembly demanding the change that we knew was needed for our children. In doing all of this work, we, the families, made new friends and built a solid sense of camaraderie that made the fight even seem all the more worth the while. From a personal perspective, I have made new friends from Charlotte, Greenville, Greensboro and other places that I don't think I would have made had we not gotten into this fight together. Some of these people like Bob D'Amelio from Charlotte have been fighting for this for more than six years! These friendships are sure to last as we all continue to share a common interest along with common experiences with our kids.

Walking the halls and
trying to get things done!

What is even more astounding was that we as a community of families had to rally even harder after many of the Service Provider groups such as the Autism Society of North Carolina abandoned the families earlier this year and cut a deal with Blue Cross Blue Shield to support language that was not what our children deserved. As I have gone on about in detail in prior posts, not only did these groups abandon the families, they absolutely refused to speak to us or address our concerns. In fact, they barred us from their Social Media pages when we tried to post about our issues with the positions they were taking. As an aside and interestingly, an apparent employee of one of these groups, Leslie Welch who lives in Raleigh, felt the need to attack those who helped us in this fight on social media after the bill passed.  Rather than give up on the fight in the face of this abandonment, we, the families, organized ourselves even more and took up the fight absolutely on our own.  All of a sudden private message groups were formed on Facebook. E-mails were sent between families from all over the state. Phone conversations were had between families and strategies were made in an effort to ask the General Assembly the question of why were we, the families and the people who would be most affected by the legislation, being denied a seat at the negotiating table. We never got an answer on that question but I am confident that our voice was heard and it was our voice that led to at least the amendment that was made at the end.

The second thing that I have learned is there are some good politicians out there. Over the span of the last several months, Representative Chuck McGrady has constantly communicated with me about what was going on with the bill. In these communications, Rep. McGrady and I shared ideas and thoughts and he provided me with a genuine and honest perspective on why things were and were not happening with the bill. When things weren't going our way Rep. McGrady always apologized even though I told him there was no need to do so since I knew he was doing all that he could. Indeed Rep. McGrady was with us to the end by demanding that Blue Cross Blue Shield release a letter to us that they had apparently given to the Autism Society of North Carolina on August 19 and the Autism Society of North Carolina had refused to share with the Autism Families, which letter states that its Blue Cross Blue Shield's intent to interpret the bill as requiring that they add new coverage while not removing anything they are already doing.  Rep. McGrady also fought for and got us the last minute amendment that I described above.  Rep. McGrady should not be blamed for the shortcomings of S676, instead I hope that all members of the North Carolina Autism Community will thank Rep. McGrady for his work in putting our kids first and doing everything in his power to make this bill as good for our children as he could.  Our General Assembly would be in a lot better shape if we had more politicians there who saw things like Rep. McGrady. 

The third thing that I have learned is that there are great advocates out there who may not share our home in North Carolina or have children like we do, but who are folks who are are willing to fight just as hard as we are in this battle. In particular, I would ask the North Carolina Autism Community to thank Lorri Unumb, Patrick Ballentine, and Jimmy Broughton for the work they have done for us the past couple years. Lorri, of course, has made such a huge impact in getting better autism insurance laws in place all over the country and we are unbelievably lucky that she became interested in North Carolina. Without her expertise, I do not believe we would have ever gotten this done. Lorri, like many of us, is the parent of a child on the spectrum and she shares the experiences that many of us have and does a great job portraying that to the members of the General Assembly. Also, when the other autism organizations in North Carolina, like the Autism Society of North Carolina, were selling out on language in the bill to the whims of Blue Cross Blue Shield with out researching and understanding the impact of what they were agreeing to, Lorri, instead spent her time researching and interpreting the language and educating the North Carolina Autism Families on what such language meant and what its impact would be. This knowledge and work proved to be invaluable to us. Beyond that, Patrick and Jimmy (before taking a job in the Governor's office this year), worked for us families as lobbyists along side Lorri helping Lorri understand and weed through the political environment at the General Assembly. As anyone who has read much about the General Assembly, let alone anyone who has visited the place, could tell you, the General Assembly is filled with egos, ideas, and personalities. To get anything done, a group needs to learn how to navigate and satisfy those egos and personalities. Even though they do not have children on the spectrum, Patrick and Jimmy in there time lobbying for us took up the cause with as much muster as we the families did and worked to make the legislation happen in as good a form for us as they could.

So, the bill is going to become law, what do we do now? Unfortunately, the fight is not over and the battle continues. Its time we move on to improving the bill and demanding that the North Carolina General Assembly remove the carve out they have just put in place. Its my hope that by the start of the short session we can agree to some language that has proved successful in another state or elsewhere that will be sufficient for Blue Cross Blue Shield to have the comfort that they apparently need to agree to removal of the carve out. After all if the enforceablilty of the caps is the only reason Blue Cross Blue Shield needs the carve out like they say it is, they should agree to remove it if other language works. We also need to demand that the North Carolina Senate move on the licensure bill that stalled in its chambers after being passed by the North Carolina House of Representatives earlier this year. Its my hope that the Autism Society of the North Carolina and the other groups will join with the families in these fights, rather than continue to stand as a roadblock in our way, and help make the legislation better for our kids!