- received the letter saying that after five years, we were off the waiting list and we would be receiving the FSSW.
- looked into what that meant, which was challenging because nobody seemed to know. Would we get money? Money in vouchers? Nothing? A promise of a new day? Nobody knows. We scheduled a meeting for December something and we had to bring Anthony.
- We went to the meeting and at that meeting, a nice woman asked us if Anthony could say, go into a drugstore and give the clerk a $5 for a candy bar and know how much change to get. Mike told her that if Anthony wanted a candy bar, and happened to be in a drugstore, he would just grab that thing and chew right through the wrapper if he wanted it and no money would change hands. What the hell, I remember thinking, can she not see him? At the end of the meeting, I asked what kind of things the voucher paid for. I said that we were concerned about Anthony's security and I wondered if the voucher would cover things like window guards for Anthony and she said somewhat huffily that no, they weren't going to pay for us to decorate our house. Okay then.
- We had to pick a management company, and on the advice of a friend of mine who was a little bit ahead of us in the process, chose Care Star of Indiana. We had to set up another meeting, with Anthony, at our house and we did. We kept Anthony home from Little Star and the case manager sat in the driveway for like fifteen minutes, on the phone, until I finally went out if the meeting was still going to happen. She said she was sorry, she was on an emergency call blah blah blah excuse excuse. For the Good of the Meeting, I said no problemo and we pressed on. She said she would send us a pick list for a respite company, since it seemed like $16,000 of respite was all we could get - the waiver doesn't cover therapeutic swimming, occupational therapy, or transportation like we were hoping it would. We also hoped that we could maybe try hippotherapy or something else which we couldn't afford but it became clear after our meeting that we should just take the respite and go from there. You can get a lot of respite or CHIO (Community Based Habilitation - Individual - basically going out to places with a caregiver, the pool, etc.) if you use the whole waiver for it, so we figured it would work out okay. Lots of times we feel like we can't take Anthony places with everyone, because we can't focus 100% of our attention on him, on Veronica. and Felicity, and they all need it. Bad math, Mike calls it, and he's right. Of course we are hoping old Veronica will grow up soon and behave better when we're out but so far, she can't really be trusted to not run out into the road or whatever. Anyway, we were hopeful (MISTAKE).
- I picked a respite care company and spoke immediately to the Director of Operations, I chose them from the pick list with our Medicaid Case Manager, then .the DoO came out to the house and did an intake, meaning she got our info and said that as soon as she got the go ahead from Care Star, she'd get someone and we'd meet them and go from there.
- Many weeks went by and finally, Mike started trying to contact our case manager at Care Star, he called her one week and then called her the next week. Then I emailed the company and then I called her and then finally she called us back. In the meantime, I emailed the DoO for the respite care company and asked her what our status was and she said she was waiting for the Care Star lady to send her something. I asked the Care Star lady about it and she said oh yes, hadn't she sent that? We had to apply for medicaid! So we did, we called last Thursday and they called back and - this was funny - the lady called me and said that when we filled out the medicaid application, we hadn't checked that Anthony was disabled and he pretty much had to be disabled to receive Medicaid. I said I'm sure what happened was that we don't think of Anthony as being *disabled* but that I guessed we should rearrange our thinking for the purposes of our application and the lady said YES we should, ha ha boo hoo. Anyway, they scheduled an interview this morning at 9:00.
- Since I had Veronica and Felicity here and we were starting some home therapy for Anthony at 9:00 this morning, I asked Mike if he would do the interview and he said sure so he talked to the guy. There was some major confusion because, as Mike said, it's still 1954 at the Medicaid office and they didn't understand why my name was different than all of theirs. The dude asked Mike what was my name on Anthony's birth certificate and Mike said it was the same as it is now, sheesh. The guy had to call back because he checked the FSSA database and Anthony's waiver letter wasn't in there. Apparently our case manager at Care Star was supposed to do that, too, but guess what? SHE DIDN'T! So I called her and the guy called back this afternoon and asked the same questions he asked Mike this morning. He asked what Anthony's doctor's name was, what his address was and his phone number, and THEN he looked him up in the database and there he was! He couldn't have looked that up first? He asked what grade Anthony was in and I said, um, he's not really. At the same time I was answering him I was checking my email and I got the info about Maria's kindergarten graduation and ugh I could do without stupid questions, buddy. He asked if Anthony could dress and bathe himself and I said, thinking it was best to keep it short, "no" and he said, and you said he has no physical limitations? What I don't like about these people is that they make it sound like he is the WORST CASE they have ever heard of! Would you say he has severe autism, he asked me. I said yes, and he's non verbal too AND low functioning, put that down, they love to see that. I mean really.
- SO now the guy is going to mail me (email, I asked? NO, he replied, reminding me that it really is 1954 up in there, the USPS!) a privacy letter I'm to send to Anthony's doctor, and I have to send a copy of his birth certificate (with my big red A last name on it) and I have to find out why the dimwit case manager hasn't filed the waiver letter, AND we have to apply for Social Security Disability AND SSI and then we can really get going on it which of course means thirty days more of waiting.
It's so, so disheartening. I also talked to the Department of Insurance today and Mike talked to our state rep's aide and she said that the guy that she called said that he is really backed up because so many people are calling about this problem. Really? Parents are calling because their kids' insurance is being taken away? HOW SHOCKING!