This past week, I was sick and ending a job. I'm still under the weather and I have the week off before I start a new job, that I am less than excited to take, as it is a pay cut. However, it is a job and a paycheck.
In retrospect, Miguel has been okay at home (because we don't leave the house anymore, really) and hell at school. A lot of hand licking has been going on and he wet himself at daycare three times last week and one time this week. That happens when there is a new teacher in the room. They don't see Miguel's signals.
Two Tuesdays ago, 2/11 I believe, Miguel had an evaluation at school and then later that night at home for in-home services. This would bridge his ARD (IEP) goals from school to home. That day at school, he was throwing chairs and trying to lift the table. A very angry day. We discussed how he wets himself at school all the time, the evaluator felt it was a means of task avoidance.
What I am also coming to terms with is that there is no "method to Miguel's madness". He's Autistic and "it is what it is". In review of his blog and behavior chart, there is no "precipitating factors" to anything. He is a mixed bag of nuts and I never know what I am going to get. I've come to accept that. I do know that he needs a better treatment and a more consistent/isolated living/education environment. Getting on the bus, going to school, daycare, stores, dinner, respite, the park, anywhere for entertainment.....it's all overwhelming for him.
Today we should be in Austin watching the races at Pace Bend but I don't have the energy to deal with or manage Miguel, in the event he has a meltdown (which he 99.9% chance will meltdown), nor do I care to pay a sitter. In January, I was looking at my expenses and wondering where all my money was going b/c I couldn't save a DIME!!! I don't spend money on myself, either. I'm low maintenance...I think I have clothes from High School....now that is a scary disclosure. As I cut back on the sitter, I find I am saving a BOAT LOAD of money!!!! I use her so I can go ride my bike for hours and run a few miles to blow off steam. Unfortunately, I am also slowly losing my mind.
Moving on....
In the meantime, I've been investigating local group homes and getting on various waiting lists. Through my investigation, I have found that Miguel needs an "ICAP" (I can't recall what the acronym stands for) and a "DMR" Determination of Mental Retardation in order to get accepted to any facility. Based on his scoring on the DMR and ICAP, will tell how much money the facility will receive from the state for caring for this class of individual.
I am still waiting for an appointment to get these evaluations complete. The organization that does the evaluations (MHMRA, Mental Health Mental Retardation Association) is awaiting records from his school to schedule the appointment. Due to having private insurance and not the GLORIOUS MEDICAID, it will have to be afforded out of pocket, as private insurances usually do not cover these charges.
Furthermore, State Schools and Group Homes aren't covered under private insurance. Miguel needs GLORIOUS MEDICAID and SSI to get residential assistance, which includes residential behavioral treatment, too.
The result is, we would have to sign over our parental rights to the state so that Miguel can get Medicaid and SSI for services.
....yeah....(long pause to let that one sink in real good........).......
Right.
Ok. So, anyone who knows me is like, "YEAH RIGHT!!! THE HELL WITH THAT SHIT!!!!!" But anyone who knows me and Miguel are like, "yeah. This was inevitable." So I am still choking on it.
I spoke to his father about it and all the options, my concerns, etc. We shared in an expletive-filled conversation about how rich people and poor people get to keep their kids and the working middle class gets screwed by the system.
This is ridiculous.
"For in all adversity of fortune the worst sort of misery is to have been happy."
--Boethius
6 comments:
First...YEAHHHH!!! You are back! I was getting worried about you guys! Whew!
Now that I got that sigh of relief out of the way, I am sorry for all the crap you have been going through.
Have you ever considered living in California? I'm not a big fan of the state, actually, but the one thing that keeps us here is all the help we have access to for Jacob. When I hear about other states, I feel very, very blessed to have started out here in the first place. If we're going to have to struggle with autism, at least this is one of the easier places to do it. Haha, I can't even believe I used a form of the word "easy" and autism in the same sentence.
Thanks for the update...you and Miguel are in my prayers every day.
YOU ARE TOOOOO FUNNY!!!! I was talking to a friend today about how resources aren't coming fast enough and how quickly I am getting exhausted. I said, "I mean, if there was something better in California, I'd move there." I swear! I said it today!!! :)
Texas does have better resources and understanding than Illinois in many aspects but I still find myself going broke over them.
I'm not making any hasty decisions but the net is being thrown out and I am waiting on what comes back.
LOL!! Funny you mention CA. Glad to be back. ;)
What about the CLASS program in Texas? I think it's a medicaid waiver (not based on income...) however the wait list is really, really long.
There is a Yahoo! Group called Texas Autism Advocacy run by an incredible woman from Houston named Michelle Guppy. Please, please join this group if you already haven't and start asking questions. These folks are in the know! Maybe there's something more???
http://www.texasautismadvocacy.org/
Big hug from Boston,
Judith
Kelly...Seriously, check into what you can in California. I am not very good at knowing all the ins and outs here - with my two other babies it is hard to spend a lot of time learning everything. BUT I can tell you we are middle income and Jacob is eligible for Medicaid and SSI if we want them. He receives ABA therapy in-home and it is paid for by the good taxpayers of California.
Also, we are eligible for a program called IHSS (In Home Support Services) here, and I think it is just a California program. Basically, because Jacob needs full-time care, it would pay me to stay home with him. I know most families here (of kids with autism) combine their respite hours with IHSS hours and that helps them pay for other caregivers to come in and help out.
Again, I am faaaar from an expert in services and the whole support system, but I know that when we were looking at other states to move to we were intersted in Texas. And we were told by everyone who knows anything about autism that it would be a very difficult state for us to live in.
If you do have questions about CA, try contacting FEAT...I am sure they could give you some great info. http://www.feat.org/
Now I am thinking about it and I am not positive that we are Medicaid eligible! I get so many terms tossed at me from other parents/professionals about what we can/should apply for and I don't have much time to look into it. Sigh.
I do have a friend here who is VERY informed about services in California, if you would like to chat with her. Her daughter does not have autism, but she is blind and has a number of other severe disabilities.
Thanks Judith and 5 days!
We are on the CLASS waiting list, which is 5-6 years. We are also on a waiting list for a similar in-home program, which is 8+ years. Odds are, he'll be 18 before he gets called and will be medicaid and SSI eligible.
Days, Jacob is probably Medicaid eligible because of the size of your family. It is income based in reference to the size of the household.
Thanks for those referrals, Judith. I actually found those yesterday after blogging and I was also perusing the summer camp sites, too. I found an overnight respite place near San Antonio I am waiting to hear back from regarding services.
I'm also looking into consulting an attorney on the whole process and what it entails. In the meantime, I contacted MHMRA today and they are going to try to squeeze Miguel in for a DMR Wednesday morning. :)
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