Special needs are a perplexing topic to the peripherally involved. Some of them are supplemental caregivers, therapists, billing staff, insurance agents, to name a few and they know the key words and tricky phrases but don’t really have a great handle on the actual topic at hand. Sure, the may know that flapping behaviors are soothing the autistic child, but don’t know why. Others may be aware that the road that you and your child are traveling down is long and hard, but don’t understand that there may not be a magic bullet or cure to end your trip. A special needs veteran may already know this, but it bears repeating. In all things you have to be an advocate for your child at all times, in all situations, good and bad.
People are people- we all have our own interests, our own needs, demands, and tasks. Everyday, we intersect with these people, people with decision making powers or even just people that can affect our day by their action or inaction. It’s easy to forget when we’re dealing with our own foibles and issues that everybody else we have to deal with are doing the same thing. That said, it doesn’t mean that they don’t need a push now and again.
Case in point- Marissa wasn’t technically “special needs” at this point, but issues with insurance is probably a day in and day out burden for parents anyhow. We had just transitioned from the one month newborn coverage under the mother’s insurance to a separate entry on the same family policy. We may not have noticed a problem ourselves, but a bill for Marissa’s care crossed at exactly the same time there was a faux gap in coverage. When the just sub $1000 bill arrived due to no insurance, I hit the roof.
Calls were made- the first to the wife’s employer who claimed no gap, the second to the insurance company who stated that the wife’s employer didn’t report the child, which was a ludicrous statement at it’s face. Both statements were a conundrum. I spent the afternoon pressing and pressing, regardless of both representatives pleading for us to call back in a few days. We still hadn’t shifted into “full court press” mode for things Marissa, as to this point she was relatively health drama free. Marissa’s mother didn’t let me wait for the callback, as she rightly assumed the longer that this process was going to take, the less likely it was going to be dealt with in a seamless (to us) manner.
Ultimately it took a reluctant conference call between the Human Resources department at the Wife’s workplace and the insurance company to get things worked out. Simple computer error, as it turns out, but everybody was so concerned about getting blamed for the problem, nobody confessed to causing the problem in the first place. This is a perfect example of differing agendas- both HR and the insurance company wanted time to circle the wagons, and figure out who was to blame. Our shepherding prevented us from being entangled in the imbroglio and fixed our problem.
So, that said, who have you had to push to make sure that your needs were met? Did you have to burn any bridges to do it? Oh, incidentally- leave a post in this thread with your pushing stories. I’ll pick one at random on November 8 (Marissa’s Birthday!), and I’ll send the lucky winner a 2lb bag of Jelly Belly Bellyflops. Consider it something to gnaw on when you’re on hold in some horrible phone voice mail system.
No story of a judicious (or not so judicious!) push, no jellybeans!