FV Indiana is very aware of and grateful for the work of many Hooiser parents that have paved the way. Indiana lost one of our great pioneers this week. Donna Gore Olsen has shared the following reflection of the tremendous impact Chuck Gilbert made:
On Saturday, May 9th, Chuck Gilbert lost his fight with cancer and the state of Indiana lost a champion for children with special needs. Chuck was working at Hoosier Broach in Kokomo when his son, Matt, was born with a diaphragmatic hernia at St. Joseph’s Hospital and was transferred to Riley Hospital for Children in Indianapolis. After eighteen months of being in and out of the hospital, on a ventilator to breathe, and needing round the clock care, the employer’s health plan had tripled the insurance premiums and was threatening to cancel the insurance for the entire employee group unless Matt’s family found another insurance plan for Matt.
Through eight months of tireless work, and the help of Governor Evan Bayh, Congressman Jim Jontz, Senator Dan Coats, and many, many others, Chuck was able to get Matt on Medicaid through a single waiver that came directly from the U.S. Secretary of Health and Human Services.
Many parents would have been content to have resolved the immediate problem for their own child and left others to figure out what needed to be done for other children, but not Chuck. Through his efforts, and those of other families, legislators like Senator Patricia Miller (R, Indianapolis), Governor Bayh, The Arc of Indiana and many others, the Indiana General Assembly passed Senate Bill 30 which changed Indiana Medicaid rules to allow the state to waive parent income and resources for children with significant disabilities in order that the children might be eligible for Medicaid without impoverishing their families. Everyone said that it would take five years to pass the legislation, but Chuck and associates got it done in one!
Today, literally hundreds of Indiana children with significant disabilities are receiving services on Medicaid home and community based waivers because of Chuck’s efforts and his belief that no other family should have to go through what his family had to experience in order to provide insurance for their child and to keep their child at home with their family.
Yet, there is still a tremendous need to provide health care financing options for children and adults; and thousands remain on waiting lists for much needed home and community-based services. Chuck’s legacy to these families, and lesson to policy makers, is that once upon a time there was an individual father, living in Kokomo, Indiana, who made a difference. It is now up to the families and policy makers of today to pay it forward. I just thought you would want to know.