We have been trying to get Jackson on a medicaid waiver here in Illinois for years. A waiver is for people who make too much for medicaid but have qualifying issues so that they waive the income requirement. Even though he requires total care and has extensive medical and developmental issues, we have had absolutely no luck. Illinois is one of the very worst states (I think it is ranked 48 out of 50 or something like that) for medicaid and I can certainly see why. I know people online who have kids similar to Jackson who qualify for their state's program easily, and even some who have kids arguably much less affected than Jackson qualify without problems or even much of a wait. Even some states that have a waiting list have loopholes to get the more severe kids on. Anyway, the way it works here (if you don't qualify for the medically fragile/technology dependent waiver) is that you fill out a PUNS survey (Prioritization of Unmet Needs) and complete things like a neuropsych eval and letters from teachers, doctors, therapists, etc. Then (even though our PUNS said we needed help immediately) the PUNS goes into a pool. As funding becomes available, PUNS are randomly drawn from the pool. There is no guarantee that his PUNS will ever be drawn and only if it was drawn can he then apply for the waiver, which he may or may not qualify for. We work with an agency called Community Alternatives Unlimited to get this far in the process. One thing that was killing me was that our caseworker kept saying that he would have a much better chance of getting the waiver if he had acting-out behaviors such as biting, hitting, throwing things, etc. Hello!!!!!! If he could actually physically do any of these things we may not even be applying for the freaking waiver in the first place!!! DUH!
So anyway, I am pretty sure he will never ever get this waiver. Whatever. But every year we have to update our PUNS so stay in the pool so I do. And every year the caseworker sends a letter with our paperwork that encourages me to contact the Department of Rehabilitation Services to inquire about In-Home Support Services and Respite Services. So just for kicks this year I actually tried.
First I called the number he gave me on the letter. I got a message saying that they are very busy with phone calls and to try calling during "non-peak" hours. Non-peak hours are apparently all day Thursday and Friday and also daily from 8-9am. Then they said "thank you for calling" and hung up on me. Ok. So I try back the next day at 8:30. They played me the same message (even though it was non-peak hours) and again hung up on me. Grrrr. I called back and just keep pushing 0 until I got a different thing. It said that 17 callers were in front of me and I had an approximate wait time of 4 minutes. That did not sound quite right to me but I stayed on hold just to see what would happen. 4 minutes came and went. 15 minutes. 30 minutes. 45 minutes. Then, I actually got a person!
So I told her what I was calling for, and she said "oh, I can't help you with that." Ha ha. She did take my address and look up the number that I should call. She gave me a number to the "Skokie" Rehabilitation Office, which had a 773 area code so it was actually in Chicago. She told me that that was a wonderful office that had really great people working there.
Ok. So I give them a call. Gotta say, the guy who answered the phone did not sound wonderful nor did he seem like he was great or even very happy that I was calling. He started taking our info but when I got to our address, he said that "this office does not service that area." Ha ha. So he is looking up what office I am actually supposed to call. He told me I needed to call the Waukegan office. Well, I don't know exactly where Waukegan is but I know it sounds far away and it is certainly farther than his office. But the number had our same area code so I guess it could be possibly possible that he was giving me correct info.
I call the number. They ask me if I am in Lake county. Uhhhhh...no. Not off to a good start. They said they would get someone to call me back. Good thing I wasn't holding my breath since I am still waiting and it's been nearly 2 weeks. Meanwhile, while they were trying to get rid of me, I was on the DRS website looking up for myself which office I am supposed to call and sure enough, it was the first one. Ha ha.
I am planning to try again but surprisingly, I just haven't gotten my motivation back up yet. Sigh.
