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On the Road to Autism Insurance Reform: NC Stories – The Millages

Lorri Unumb, vice president of state government affairs for Autism Speaks, travels the country advocating for families and individuals facing the challenges of autism. This is her ongoing series "On The Road For Autism Reform."

The best part of my job is meeting amazing autism families all around the country.  During my time in North Carolina recently, I have heard so many inspirational stories from all corners of the state, and I want to share them during these last few weeks of the legislative session.  Each day, I will share a post written by a North Carolina family who is working to help pass autism insurance reform this year.  Some of these families desperately need coverage for their own child; some of them are working solely for the benefit of others.  These people inspire me every single day.

Meet the Millage Family

We are the Millages: Thom, Joni, Thomi and Shane.

Thomi is our oldest at 4 now and was diagnosed with ASD just before he turned 3; Shane is 2 and received his ASD diagnosis at 21 months. Immediately following the first diagnosis, we were trying to educate ourselves as to what Autism Spectrum Disorder is, and what we could do to help our child. We tried occupational, physical, horseback riding, music, speech, play and other therapies. They seemed to help but not a whole lot; then we found out about the Social Butterflies summer program through The Mariposa School for Children with Autism and in 6 weeks -- WOW what a dramatic difference! Thomi's improvement with speech, eye contact, behavior, and general communication was so significant that Joni worked tirelessly to get him into their 1:1 ABA treatment program. We were very fortunate to receive one of few state grant spots that covers his treatment until age 6 (as long as the state continues to fund the grant).

When school started, Thomi was going to Pre-K in public school in the morning and Mariposa in the afternoon. That's when we started noticing that Shane was exhibiting the same type of atypical behavior around peers his own age. (Before then, the boys were together all the time, and Shane's personality was so opposite from Thomi that we were sure he was typically developing). This was alarming to us and we immediately sought help; his diagnosis followed, and we were fortunate to get Shane's ABA therapy covered under the same state grant. Shane is excelling is all areas; it's amazing on a daily basis!

We are so proud of our children and grateful for the care they've received at Mariposa; the staff is remarkable! Here's where things get tough for us as parents.  If we lose one of the few state-funded grants, what happens then? No more ABA therapy for our boys that has empowered and enriched all of our lives.  We cannot afford to pay out-of-pocket for these services as the cost exceeds our household income, and insurance does not cover ANY of this treatment.

North Carolina is our home.  We have friends and family here, and we own a business here.  Will we have to leave everything behind and move to a state that mandates insurance cover therapy if our funding gets cut?  Or will the legislature pass the autism insurance bill, and we can stay either way?

I don't know the answers to those questions and here's a bigger question: what about all the families who cannot afford it and who cannot get a grant for ABA services? It's heartbreaking to think about it because it could easily be us.  We know and are related to families whose children with ASD are going without Applied Behavior Analysis. 

But there's a silver lining in this dark cloud: the Senators of this great state of North Carolina could (and should) vote the autism insurance bill into law, and we could join the thirty-something other states who refuse to turn a blind eye to children with autism. We have a long road ahead of us in the Autism community and we won't give up.  We can't - this is too important. Please North Carolina Senate: We are pleading with you. Help us and our children!

Thom and Joni Millage

Garner, North Carolina

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.