Last week, I met with our case worker from the agency that coordinates Riley's Medicaid waiver. I didn't think anything of the visit. I didn't prepare for it, I figured it would be quick and painless and we'd get a stamp for intensive therapy funding for the next year. She came over, we sat in the living room chatting about Riley and then quickly moved through "the annoying paperwork." Even when she was asking me all of the questions on the functional screening, I made a joke about it ("Should I be fudging these? Geez!") I asked if I needed to be worried about him qualifying, and she said she didn't think so. In a later phone call with our senior therapist, I was even more at ease when she told me that "if she thought he wasn't going to qualify, she would have told you right then and there."

So imagine my surprise when I got a call on Tuesday, telling me that Riley no longer qualifies for services. The immediate shock and devastation from that phone call was unbelievable. It caught me off guard, and sent me into sobs that didn't stop for a good hour. While legally we have the right to appeal, I don't see the point. The checklist covers basic life skills (such as dressing, following directions, etc) and the truth is... I think I agree that he does not have deficits in those areas. The only reason we'd appeal would be to buy us more time to figure out what to do. I'm suddenly learning that if I would have lied ("fudged") that screen, we would have gotten another year of therapy. Since I answered those questions honestly, we don't. I am certain there are families that work this system, and I am not sure why I didn't think to be concerned about losing therapy. Sometimes it's hard for me to see just how well he's doing.

I spent most of Tuesday and Wednesday on the phone. Was this a mistake? Nope. I talked to the executive director of the agency. They went over Riley's screen multiple times. Our case worker even talked with Riley's teacher to see if they could get a few more things he was struggling with. Nope. He missed the cut off by a mile.

Our state passed a law in 2009 that insurance companies must cover therapy for children with autism ($50,000 at intensive rate, $25,000 at non intensive rate) Unfortunately we learned that since our insurance was through a self-funded plan, Chad's union health fund had the legal right to decide whether to cover it.

In a very stressful coincidence, I've been dealing with my husband's union with insurance issues. When on the phone with them, I asked about autism coverage. I ended up talking with one of the higher-ups at his union, who told me that the health fund trustees are meeting next week to discuss next year's insurance plan. He said we could write a letter and ask to appear at that meeting to discuss this.

So, that's where we are going next. The letter is sent, we're waiting to hear about the meeting.

If they decide to cover it, there are many benefits for us. First, with the Medicaid waiver, we had to maintain a minimum of 20 hours per week to keep funding. With Riley starting Kindergarten full time in the fall, that would be a challenge. We'd end up with therapists at our house all night and a lot of the weekend. Another benefit is that even if his diagnosis is down graded, he will still receive therapy. The state mandate covers kids as long as they have an ASD diagnosis.

If they don't decide to cover it, we will have to decide what to do. Many things have been going through my head...

We could pay out of pocket for minimal hours (even with the sliding scale fee, the therapy is $40/hr.)

We've talked about taking a therapist or two from our current team and paying them out of pocket to work with us. The line therapists only make something like $10-12/hr out of that $40/hr.

I could get some sort of childcare for the other kids so that I could continue doing the therapy with him myself.

Or... we could just let it be, and move on to the next phase.

I don't really want to do the latter, but it is damn tempting. Intensive therapy is extremely demanding of myself and my family, and there is some aspects of it being over that are very appealing. Riley could be a "regular" kid again. But the fact of the matter is that probably wouldnt' be good for Riley, as he needs the structure and he needs to interaction.

I have been preparing for Riley's IEP for next year. The meeting is next week. I went to visit the school this week (I had the appointment before we knew about the Medicaid situation) I met with the principal and I sat in a classroom, likely to be his classroom next year, for about 20 minutes.

I loved what I saw. I'd venture to say that this is going to be a really great model for Riley. It is a small school in our district, one that has a lot of different families, children, and cultures mixed together. The way they structure the special education is brilliant. They have one classroom where they put all of the children with IEP's together. This allows for the services these children receive to be done in a more streamlined fashion. Of about 15 kids in the class I watched, I believe 3-4 had IEP's.

The coolest thing about it? I couldn't tell which kids they were. Yes, that's definitely where I want my kid.

After the meeting, I have a feeling I'll feel much better about the possibility of not continuing with therapy. If we don't receive insurance coverage, we will probably stop in September regardless. Or, at the very least, just a few hours a week.

We will see what the next weeks bring. I also made an appointment with the neuropsych for April 6. So that is also coming up. I just think it will be helpful if we have an update ADOS and diagnosis for insurance coverage, if that all goes through.

We'll see.

And side note, I did not even go in to what the last month has been here in Madison, WI. I have been at our capitol over and over in protest of the latest budget, which in addition to eliminating collective bargaining for public employee unions, makes huge slashes to Medicaid. At one point Riley and I visited together and I took the bullhorn to rant about it. The whole rotunda chanted "For Riley." This was not even a month ago. It is a little strange that right in the midst of this fight, my kid no longer qualifies. And the next thing on tap for legislation is making the insurance mandates have even more loopholes. It seems there will continue to be things to keep fighting for.

Oh, autism. What a pain in the ass.