Sunday, April 10, 2011

Accidental Advocate

I have a knack for writing letters of complaint. The letters I have written have resulted in refunds, upgrades, numerous free airplane tickets, and even three new watches. In other words, I am willing to fight for what I think is right, and I am usually pretty persuasive in the process.

But, I don't understand why it is that these days, I have to fight for just about everything. When my Comcast bill comes, it is inevitably wrong, or the rates have gone up, or a service I never requested has been added. So, I spend minutes and sometimes even hours on the phone trying to get my bill back down to where it should be.

When Aetna sends EOBs for someone's doctor's visit, 9 times out of 10, they are refusing to pay because either the doctor is suddenly out-of-network, or my policy is no longer valid, or the treatment isn't covered. So, I spend minutes and then hours talking to customer service pointing out that, no, we have not changed doctors or policies or treatments, and yes, they are all covered. The year Ren had eye surgery, it took 12 months of semi-monthly calls for me to get the insurance company to pay. Twelve months!

Most people don't have the time or the patience for this. I don't have the time or patience for it, and after years of being a constant advocate in the name of these and many more unnecessary "causes," I'm tired.

But now, I find myself needing to advocate more than ever for my kid who's "on the spectrum" and in need of and entitled to support. The going has been tough. Nothing about the process is transparent, and it turns out that government agencies that are given funds to help kids like mine are not necessarily willing to help. When I find myself sitting in a meeting with school special ed representatives who tell me that Sky is doing too well academically to qualify for support, and that "the school system might not even consider him to be autistic," I don't even know what to say. He has a medical diagnosis based on numerous hours of tests and the expertise of a team of specialists at the best children's hospital in the state, but these school administrators are not willing to spend enough time with him in the classroom to know which kid he is, much less whether he is autistic or not.

Slowly but surely, we are getting the services we need, but none of them are coming from public school funding. How do other parents deal with these issues? Why should we have to fight so hard to get support for something that is hard enough already? When did we all become accidental advocates?

For more of the story, see: Accidental Advocate Redux, Is it Okay to Laugh Now?, and The Best Offense is a Good Defense


FMBMC said...

Honestly, you're best post yet! I just wish once someone would say, "Yep, we screwed up" and not make me feel like I'm wasting their time for pointing out their mistakes.

Mom on the Edge said...

In some (most?) cases, I'm afraid it's intentional. Most people don't check their bills closely... And in the case of services for autistic kids, I have heard that this school system is known for taking money from the government and then failing to provide services. Sigh.