What do parents need to be able to take care of themselves while caring for their special children? As a parent, I’ve found it’s usually information and resources in 3 areas: health, education, and support. Once you know what you’re dealing with and how to find help, you won’t feel so helpless and hopeless.
My rude awakening was when even after I saw a therapy covered in the insurance handbook, and received verbal confirmation, the claim was denied despite following all the guidelines. It took me a year and a half to appeal and I won. Insurance companies depend on families giving up; only 1/3 of families appeal and 50% of the time it’s turned around in their favor on the first try. So be like a dog playing tug of war with a sock-don’t let go and don’t go away! Families Voices can help parents of children with special healthcare needs on how to appeal claims. Basically, do everything in writing and send it certified/return receipt. Because phone calls “never happened” and then they can’t say “they didn’t get it in the mail.” Also, a doctor’s note will usually turn things around immediately. I also keep a copy of everything and put the date sent, or re-sent, on the top of the page to track. Then I match the Explanation of Benefits to the claim when it’s paid. I also look through my file at once a month and resend anything that hasn’t been processed yet.
My second shock was struggling with our former school district who wanted to send a medically fragile child who had never been out of the house for her first 6 years and still napped, to a full day program almost an hour away. It wasn’t only that she couldn’t hack it physically, but the program was for children with a disability that didn’t apply to her. It was supposed to be a happy time when she was finally no longer homebound and able to go to school. Even after I called all the preschools in the phone book, only 5 were willing to take her (this was before I knew her rights) and one which had just gotten a grant to include children with disabilities told us the day before school started we’d have to find another place! We then did find a wonderful school (Kiddie Academy) where she went to regular Pre-K and Kindergarten which I later nominated and they received an award for excellence from the national Exceptional Parent magazine. During this time, I found out that there was a Parent Training and Information (PTI) Center in every state which lets parents know their rights and the district’s responsibilities under state/federal special education law. We moved to a better district after she aged out. I now co-lead the Hamilton Township District Parent Advisory Council, which is the local parent special ed. group.
Maybe I should’ve put this first. Even before our struggles with insurance and schools, I wanted to talk to other parents who’d “been there”. I wanted to know what to expect with regard to kidney disease because it’s so rare in children. I became aware of matching organizations such as Parent-to-Parent (P2P), Mothers United for Moral Support (which has the best newsletter ever), and Friends Health Connection. They match families to other volunteer parents of children with the same condition. When my daughter later received a secondary diagnosis of autism, I again reached out to other parents because I felt like I was back at square one, almost like I had a new child and didn’t really know her.
I want to mention that I volunteered for years and now work for the Statewide Parent Advocacy Network, which is NJ’s PTI. There is a PTI, Family Voices, and P2P in every state but due to the vision of our co-director Diana Autin, NJ was the first state to have all three in one location. So we have health, education, and support as “one-stop shopping” for parents, and other states are starting to do the same. Parents need to have the best information and resources in these areas to take optimum care of their children and themselves. When families are less stressed and more empowered, children are able to reach their personal best potential, whatever that may be.
Next month I’ll have tips on how to find out information on your child’s condition to help you deal.
Health Family Voices www.familyvoices.org (888) 835-5669
Education Parent Training and Information Centers www.taalliance.org/ptidirectory/index.asp
Support Parent to Parent www.p2pusa.org (click on “view U.S. Map)
Mothers United for Moral Support (877)336-5333
Friends Health Connection (800)48-FRIEND