Pass Luke’s Law, To Help Care For Hawaii’s Autistic Children
Today, I write as a parent, a professional, and as a tax-paying community member. I am the parent of Luke, the child for whom is named.
During one of the committee hearings held earlier in the 2013 Session, I sat teary-eyed as I recounted the numerous times that I had requested services for Luke here in Hawaii, only to be denied by his school and our insurance company.
Luke started his journey with Autism on the Big Island. Back then, my boss, who was the principal of Luke’s school at the time, joined us during a meeting for Luke’s federal Family Support Plan and implored the coordinators to provide the speech services that Luke’s 0-3 program couldn’t provide.
Most of all I remember a moment during my son’s Individualized Education Program meeting, when Luke’s pediatrician shook her head at the school, then turned to us and said, “At this time the best thing you can do is to be a family for your son.” What was I to do?
As a mother, I felt I only had two options, both with consequences. On the one hand, I could move my son and my family to my parents’ hometown in Connecticut, where a nearby New Haven-based program would likely provide for Luke’s care and services at no cost. On the other hand, I could stay in Hawaii, our home state, that is one of the last in the union to pass insurance coverage for Autism services. Born and raised in Hawaii, Luke loves to play in the ocean; I struggled to imagine taking Luke away from his home that he loves so much. Ultimately, I decided to keep our family here in Hawaii. The burden of such a decision is something none of our local families should have to face.
As a teacher, I have witnessed children go through the lengthy diagnosis and eligibility process with the DOE. Yet despite the process, Autistic students are in the general education class completely unaided. This burdens not only the school, but the child with Autism, and the other students in those classes because the teacher—typically untrained to work with Autistic children—must dedicate inordinate amounts of time to that child. Our schools are not equipped to be the catch-all for the growing number of Autistic children entering our public education system.
Luke’s Law, SB 668 SD2 HD1, could alleviate the burdens upon the public education system by having appropriate diagnosis and efficient therapy if our insurance carriers would cover these services. We know from the 32 states where these services are already covered that the actual cost to the insurance system is low. These 32 states have already recognized the long-term benefits provided to Autistic children and their families. These services make kids better and help them to become productive citizens instead of becoming wards of the state. These states also understand that this legislation provides financial benefits to taxpayers overall.
The cost of providing services for a child like mine is in the thousands of dollars, which most of us cannot afford. What this means is that we have to deplete our savings in order to take care of our children. That is for those even lucky enough to have sufficient savings. For many families it may mean bankruptcy and for many it means their child has to go untreated. With one in every 88 children affected by Autism, it’s likely that you or someone you know has a child with Autism.
In the next two weeks, our Legislature will decide the fate of Luke’s Law and, consequently, whether to require coverage for essential services whose costs are currently bankrupting many of our local families. We call ourselves the Aloha State. Let’s show our Aloha and protect this unserved yet growing population of Autistic keiki and their families.
About the author: Geri Pinnow the married mother of two children. Her son, Luke, has autism. She has a master’s degree in education and has worked for the Hawaii Department of Education for 22 years.
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