Last year I did something I had never done before. I attended a committee meeting for the North Carolina General Assembly. Actually, it was the Senate Health Committee and on the calendar that day was a bill that would require all state regulated health plans, including the State Employee Health Plan, to cover behavioral therapy up to $75,000 per year. This was a big deal. We had over one hundred parents and advocates in the room. Lori Unumb from Autism Speaks, who is involved in state initiatives like this across the country, was scheduled to testify.
When the meeting began, my heart sank. As Ms. Unumb made her presentation and Senators started asking questions, it occurred to me that they had no clue what autism was or the impact it was having across the country and beyond. Instead of an informative session where we could present the benefits and strengths of the bill, Ms. Unumb was educating these legislators about autism. The combination of a lack of understanding by the Senators and the absence of a Fiscal Note (estimated impact on the State budget) left us dead in the water, and we were done before we ever got going.
I realized that we had not educated our legislators. Just like we did not understand autism when our children were first diagnosed, these folks have no idea of what Autism Spectrum Disorders (ASDs) are and how they disrupt the lives of whole families. This had to be our mission. This year, I have set the goal of speaking to every local legislator I can; which brings me to a meeting I attended last week.
State Senator Richard Stevens Chairs the Education Appropriations Committee. He is also my representative to the North Carolina State Senate. Because of his role in leadership, he is quite busy and his time is at a premium. I first requested a meeting with him on February 3rd. After a few e-mail exchanges and visits to his office, I managed to score a meeting for last week (proof that patience and persistence pays off). As soon as I had the appointment, I put out the word for parents to attend. With the help of Maureen Morrell of the Autism Society of North Carolina (ASNC) and Emily Nettnin Earle at the Mariposa School, eleven of us attended the meeting that day.
While I expected just 15 minutes of his time, we were able to have at least twice that much time with the Senator (it may have been more but I was afraid to look at my watch during the meeting). The topics discussed ranged from the budget to Medicare waivers to insurance reform to adult services. I could not have asked for a better meeting.
As happy as I am for the outcome, I realize that the meeting will only pay dividends if many more meetings just like it also take place. This is where I ask for your help. Most you that are reading this do not live close to Raleigh and that can be an advantage. The halls of the capital can be very chaotic these days and it is hard for a message to get through even if you get some face-time with someone. Meetings back home can take place at a different pace. Organize a barbeque and invite some families over so that you all may share your story. The activity is not as important as the fact that you have the opportunity to speak to the folks that represent you and to educate them about the impact ASDs have on your family. In fact, the opportunity for Representatives and Senators to see your child “in action” may bring your challenges into sharper focus than anything we as parents could say.
The first step is to make the appointment with your legislator(s) (invite them both). Then get the word out. With many families involved, the planning becomes much easier.
Twenty six states now have autism insurance reform laws and North Carolina is not one of them. There are many more issues waiting to be addressed after that. We will not accomplish any of it if our lawmakers do not know or appreciate our challenges.
Scott Taylor
Tags: autism education, autism insurance, autism legislation, autism north carolina, Autism Society of North Carolina, Autism Speaks, North Carolina General Assembly
Thank you Scott for pushing this. I wanted to be there but had to deal with some health issues and was unfortunately unable to do so. However, I did contact each of my representatives. I was surprised by their graciousness and their smile and a wink support or what seemed like support. Keep at it!
Funny this should be posted today. I was just last night looking for information about these bills (house and senate) to see \”where\” they were. I had not heard anything in awhile. This is the ONE piece of legislation that would impact a huge amount of families living with autism in NC. Early intensive, behavioral interventions in our state are virtually non-existent, despite every study telling us of the importance. And by non-existent, I mean not available to most families, primarily because of the steep cost.
The tactic I have been taking when talking to legislators is to explain autism as a MEDICAL condition whose evidence-based treatment, endorsed by the AAP and AMA (ABA, speech, OT) is not being covered by medical insurance. We bought health insurance for our son with the understanding that if he became sick (and to include all organs of his body, including brain) that the insurance would cover physician recommended treatments. My developed autism and the insurance company rejected all claims for coverage for treatment. If he had cancer and BCBS would not pay for his chemo, there would be national outrage. Where is that outrage for my son?
Thank you Scott for what you have been doing and thank you to others who work on this issue. I am willing to help in any way that I can. I\’m counting on this legislation passing this year. We all need to do our part. They cannot ignore us if EVERY one of us emails, calls, meets with our reps.
Hear! Hear! Thank you, Scott. Thinking about hosting my own BBQ…