Earlene Sharp Anglin is a part-time geography instructor at Marshall University in Huntington, W.V. who also volunteers with various local autism organizations and mentors parents of newly diagnosed children. Having a 9 year old son with autism, she understands the difficulty of affording the medically necessary treatments required of this diagnosis. As Autism Speaks’ West Virginia State Advocacy Chair, Earlene played a key role ensuring passage of House Bill 2693, requiring insurance companies to cover the treatment of autism.
On April 1, 2011 West Virginia made history becoming the 25th state in the nation to enact autism insurance legislation. Being a key advocate throughout the legislative process allowed me to witness first-hand the dynamics which would come together and ultimately make this law a realization for West Virginia families.
The very fact that families have to fight for insurance coverage is maddening.
It was difficult for many of our families to get past this but you must remove anger from the equation in order to be productive. One key element of success in West Virginia was the formation of a cohesive, core group of advocates both in the Capitol and throughout every corner of the state. Consisting of parents, providers, and a diagnostician, this group of volunteers vowed to have “one voice” prior to the session’s commencement and to carry this legislation to a successful outcome.
We never took our eyes off the goal – to end autism insurance discrimination for our children.
Decisions were made through a series of meetings and conference calls – sometimes late at night or early in the morning. Daily updates were communicated to the core group of advocates all day long – thank goodness for cell phones, email, and texting. The Autism Votes Advocacy Program and social media blended together to update and mobilize other interested parties throughout the state.
Positive persistence was a constant for all involved.
Another crucial element of our success was “finding our champion” ~ someone within the legislature to herald our cause. When you find yours, developing an open, honest and respectable relationship with these key legislators is vital. In most states, including West Virginia, there are legislators whose lives have been affected by autism. However, our champion in the West Virginia State Senate, Senator Evan Jenkins, is not directly affected by autism. Nonetheless, he proved to be a credible, respected, and admired pillar of strength and determination for those in the autism community. He escorted HB 2693 through the Senate with a calm, steady hand and was remarkable in his ability to effectively communicate the historical significance of this bill for countless West Virginia families. Equally as important, he kept an open line of communication with key advocates providing status updates and invaluable political insight. His dedication to our cause was unwavering. I am proud to be his constituent.
As the autism insurance reform legislation train rolls on, I would urge future advocates in other states who climb aboard to take some time and get to know as many of your states’ representatives as possible – personally. Your strongest supporters may not always be the most obvious. It is important to make the effort to find a true champion, or two, within your state who is willing to catapult autism into the spotlight and then guide you through the abstruse process.
Finally, Autism Speaks through their Autism Votes program afforded West Virginia families professional testimony, guidance, and advocate expertise from a national perspective. The formidable work of the Government Relations/Advocacy Teams helped pave the way for a successful outcome. All this time I thought money raised at Autism Speaks went only for medical research and awareness projects, but I learned how invaluable an investment in their Government Relations department can be. Members of the Government Relations department came to West Virginia to testify and to share the knowledge and experience of having been involved in the legislative process in numerous other states. Their advocacy website proved to be an invaluable tool and they answered our calls and emails, day or night. West Virginia families did not have to pay for any of this. This was a great service to the autism community as a whole in our state.
Unified advocates, unwavering champions, and unrivaled experience are without question necessary requirements for successful passage of autism insurance legislation. Had any of these three elements been missing from the equation here, the outcome could have very well been quite different.
Ultimately, HB 2693 passed both the House and Senate unanimously and Governor Earl Ray Tomblin signed the bill into a law which will go into effect on July 1, 2011. This “World Autism Awareness Day”, and indeed all during Autism Awareness Month, West Virginian’s should embrace this moment and celebrate our legislators’ achievements.