And The Claws Came Out

I went to a seminar last week on navigating the Medical Assistance waters. It was pretty intense. Typically, those types of events make me sad. I hate that I need to be there. I am resentful. I am tired. Blah, blah, blah.

But, I am glad I went. I am in a battle with the county over Cooper’s benefits. We moved our whole lives here so Cooper could attend a school that has the price tag of Yale. And we need help paying for it.

Here is how the county works. You get a letter that tells you that your benefits are dropped as of certain date. You can appeal if you call your case worker. No other explanation. A mother, let’s say she is me, leaves multiple messages for the case worker and ultimately starts calling every hour, on the hour, in hopes of speaking to an actual human. Then, DAYS LATER, the case worker calls you back. This is where it gets good.

She yelled at me! She yelled at me for leaving multiple messages because apparently listening to my two voicemails means that she isn’t offering help to someone else who needs its. And the claws came out. It went something like this, “listen here lady…My family moved our lives 3 hours away so our autistic, nonverbal, not potty trained son could get the services he desperately needed so that we could have the resemblance of a normal life, so I would appreciate a call back from you in less than 24 hours. Hell, less than 48 hours. I also work 40 plus hours a week and not speaking to an actual human has greatly inconvenienced me. Let’s talk about that.”

And she backed down. And I go onto learn that his benefits were denied over a clerical error on their end. Sigh. She also informed me that she is extremely busy and wasn’t sure if she could get his benefits reinstated so he will mostly likely have a lapse in coverage. Sigh.

This was last week. And I have no idea if the situation is resolved. Which….is awesome.

This shouldn’t be so hard. It really shouldn’t.

So that same day I attend this seminar about navigating the medical assistance world. I had drive to Duluth that day and I was exhausted. It had been a long day and I wasn’t feeling sitting around talking about my autism feelings.  I zoned out for a bit and see this couple.

I made a few assumptions right away. They had money…most likely lots of it. They were also very new to the special needs journey. They were also lost. That part was obvious.

The dad asked a lot of questions. Lots. More than anyone else. And his wife just kept staring into space like she didn’t even hear him asking the questions. At one point the lecturer was talking about filling out the MA paperwork. She said that as parents we need to be completely 100% honest with ourselves about how hard our journey is and write it down on the applications. Don’t sugar coat it or they will deny you. Give as much information as you can.

She told this story about how when she was filling out her paperwork the first time she wrote that she didn’t really need any help getting her son ready for school. It was no problem at all. And then she thought about how she has to get up at 5 am to get him ready by 10 am in hopes to avoid a meltdown. She said it took her 5 hours every single day to get him ready. Wow.

So this dad was listening to this and all of a sudden blurts out, “Can I just pay someone to do all this paperwork for me? It’s just too much.” At first I thought, what a douche. Throw money at the problem. Good luck with that.  And then I looked back and his wife was crying. And he had tears in his eyes. They looked so sad.

He wasn’t a jerk. He just didn’t know how to fix it. And that is exactly how my husband felt at first. Maybe still does. With autism you have no control over the situation. You are on a ride that you can’t get off. Ever.

I actually left feeling good. So many of these parents are getting extensive services for their kids. They had to quit their jobs to care for their children, modify their homes, etc. Cooper is healthy. He is happy. I am lucky in that sense.

Anyhow, if you live in Minnesota and need help with getting benefits for your child, check out the Pacer Center. They will help you.