As a mother of a child with Down Syndrome, Christy said, "It's been a long process, finding appropriate things to help my son, Landon."
Christy took Landon for physical therapy at St. Vincent hospital and happened to notice a brochure for About Special Kids (ASK) in the waiting area. "ASK is great service! I wish I would have know about them when Landon was first diagnosed. He was 3 ½ before I found ASK. I wonder what resources I missed during that time that may have helped my son?"
She called ASK and talked with a parent liaison who also has a child with special needs. "The Parent Liaison has been really helpful leading us to the right places. For instance, I needed to find out about Medicaid waivers and what services are available. She gave me information regarding applying to Medicaid and resources that could help us with other issues like finding insurance coverage or grants for my son's orthotic shoes."
ASK makes periodic phone calls throughout the year to families, providing additional resources and suggestions the parent might not have considered. "The Parent Liaison even suggested resources like Hope's Way. They offer family recreation every 3rd Saturday for kids like mine… it's free for our entire family and really fun. We do it on a monthly basis."
Thrilled with all the resource information being provided to her, Christy added, "She suggested different grants to apply for and the names of organizations that offered scholarships and grants, depending on our needs."
ASK parent liaisons understand the needs of the entire family have to be addressed, as well as the needs of the child. Parents of children with special needs may not be able to hire the neighborhood babysitter… they may need a trained professional. Families need a break and respite care provides a welcome source of relief. "ASK put us in touch with the Arc of Indiana. The Arc has helped us fill out the Medicaid Waiver forms and get respite care for us, and other things we qualify for while we're on the waiting list for Medicaid. The Arc has activities for our family too."
Christy still wonders about what could have been done for her son if she had only known about ASK when her son was first diagnosed. She said, "Hospitals should send ASK information home with all newborns. Even my church has a special needs ministry and they didn't tell me about ASK. I'm going to tell everyone about ASK.