We had a CRCG meeting last week for Kitty, and I'm still trying to get even one of the action items done. This is our third CRCG meeting and I'm not sure we'll be doing another. I can't decide if it's worth the effort. There were 5 action items, but the other two involved future CRCG meetings.
Action Item #1: We want partial day psych hospitalization (aka intensive outpatient) for Kitty to help us avoid RTC (residential treatment). In the meeting we were given the name of a place, C.C., that accepted Medicaid and also offered partial day hospitalization.
I called them the next day and found out that Traditional Medicaid (which is what my kids have) doesn’t actually cover "partial day psych hospitalization" or "intensive outpatient" or whatever you want to call it. Medicaid claims that the coverage we got 2 years ago for partial day must not have been covered either and the hospital must have “eaten the costs.” I find that hard to believe, but there you are. C.C. verified it. We are not eligible for the C.C. outpatient program. Moving on. *sigh*
I admit that a few days ago I discovered that the partial day hospitalization we had for her two years ago was not paid for by Medicaid like I thought. *blush* I've been pushing everyone to help us get it "again."
Action Item#2: We wanted updated neuropsychological information (the kids were tested in RTC 2 and 3 years ago) that really gave us a more accurate picture of the kids' skills and capabilities. The CRCG committee gave us the contact info for a neurologist that took Medicaid. The good news was I managed to get an appointment right away (we're on a major deadline for Bear because he turns 18 in less than 2 months and we're not sure we'll be able to keep Medicaid after that). The bad news was that meant I had only that night to get all of the huge stack of paperwork filled out, and all the old psych, neuropsych and school reports gathered.
Here's the results of seeing the neurologist:
- The neuropsych testing the kids did at the RTC appears to have been pretty thorough and still seems accurate so we don’t need more testing.
- HIS RECOMMENDATION: We have a (MHMR?) psychologist sit down with us and give us the concrete information we need about the kids’ skills and
- Bear is about to turn 18 so this is most key for him, but one of the things I mentioned was driving, and while the neurologist didn’t come straight out and say so, he definitely did not give us the thumbs up for this.
The children are making major med changes right now, which Bear heard as, “Don’t make any more med changes and in a few weeks you can drive.”
Obviously this was not what was said, but Bear fought hard against all information I was laying as groundwork (“Parts of your brain were damaged before you were born or when your head was injured as a child – depending on where these parts are they can do things like make your memory not work as well as your friends or it could be like the movie “50 First Dates” where your short term memory could be damaged forever.”)
- Bear overheard the doctor read out Kitty’s IQ (verbal 83, regular 77 or something like that) and Bear asked how “smart” people could be. I told him that genius was 140. And when he asked how “stupid” people could be, I
told him that people with mental retardation scored 70. When he asked what his IQ was, I told him I didn’t know (although I really do know that it’s in the 70s), but that especially because of his cerebral dysrhythmia that parts of his brain worked better than others. I told him his verbal IQ was higher than other areas (it’s around 100) which meant that he understands what people are saying and speaks well (his response was that he would stop talking – *sigh* - sometimes his defiance is so predictable).
- Kitty slept through most of the appointment and overheard very little of this. Her sleep patterns are so unpredictable I hadn’t taken advantage of the Trazod*ne increase from the last appointment because she’d suddenly started sleeping well. Stress of the last few days (family visiting) is probably why she isn’t sleeping.
Here's what I requested from the kids' MHMR casemanagers:
So what we need is someone or a team of someones who understand the neuropsych reports (psychologist?) and is familiar or can get that way with the kids’ issues and capabilities, to sit down with us and help us understand what the kids are capable of and areas where we need to steer them in another direction. This information probably needs to be reported in some way to the schools (they have it, but I think it’s gotten buried over the years). I think in some areas, like possibly driving, that this information needs to be discussed with the kids (especially Bear) by someone else, since anytime we’re pragmatic they accuse us of putting them down. Maybe we can put it off for Kitty, but Bear turns 18 next month.
Their response? They told me to find my own neuropsychologist that takes kids and accepts Medicaid. Who I'm sure I'll have to provide with all the information too. *sigh* It's on my list (you don't even want to see that list, but it's below get the washer fixed and clean up the almost week old foul smelling water that wouldn't drain, and Kitty got all over the floor when I told her she had to clean it up since she was the one that overloaded the machine yet again).
Action Item #3: The kids want to learn to drive. I don't think they're ready (due to their multitude of issues). The CRCG group suggested a local hospital's Rehab Driving Course that they thought would take Medicaid.
I called them and they really will teach kids with special needs like Aspergers, Autism, neurological issues… pretty much whatever, how to drive. It’s basically considered occupational therapy and they take it very slow. HOWEVER, they require the child to have a learner’s permit, AND they don’t take Medicaid.
So assuming the kids are capable of driving (which I feel is a big assumption), we’d have to get Kitty through a parent-led driver’s education program and Bear through at least the written portion of the adult driver’s ed. The hospital's driving program IS covered by DARS (Department of Assistive and Rehabilitative Services) so it’s possible to get DARS to pay for it, since we don’t have private insurance.
The lady I spoke to did suggest we start doing what she calls “Commentary Driving,” where you have a running commentary on every little thing you’re doing as you drive (I'm watching to see if that man will pull out of his driving, I'm checking rearview mirrors for...).
Speaking of DARS, Bear got the Go*dwill job through DARS. He looked so nice and “professional” in his interview suit that I wish I’d taken a picture(especially since he hated the "thin fabric of the pants, and must have been seriously dying of a heat stroke (he had on his usual layer - boxer briefs and tank top, undershirt and gym shorts, t-shirt and slacks, who knows how many pairs of socks and boots, long sleeve white button up, tie and suit coat. He started today (Monday) and works 9am to 3pm (well we thought it was 3pm. Ended up sitting outside in 100+ degree weather waiting for him. He didn't finish until 3:30pm).
Bear is desperate to go to football speed camp, but waited until the last possible second to decide (he told me Friday and it started on Monday). He had a sports physical Thursday and the doctor supposedly gave him a stern talking to about staying hydrated, eating better (he’s put on 8lbs in the last month) and being more careful of head injury (he allegedly had a concussion in 7th grade). I’m still very concerned about this since he’s had heat exhaustion several times in the past few years. It’s an expensive experiment (the cost of the camp plus late fees is coming out of his first paycheck) and I’m really thinking the hours might kill him (7 to 8:30am then be at work at 9am), but the exercise might help with his weight and high blood pressure issues. I told him if he wanted it then he had to contact the coach and see if he could still start (camp started over a week ago now - but he still hasn't said anything about having permission).