.... feel free to offer advice.
M is on a waitlist for the "CES Waiver", which is basically a program that provides support to the most severely disabled children. Many of the supports and services it pays for are not things we need (like adaptive technology, and home modifications), but being on the waitlist also means that as soon as M reaches 18 he is guaranteed at least a minimum of adult supported living services (whereas people not receiving CES just go on another waitlist). Having him in place to receive adult services is important to me and a main reason why I worked to get him qualified for CES.
The organization (DP) that distrubutes state developmental disability funds (they also manage the CES waiver, and regular DD services) called me the other day to let me know that Michael was eligible for a new program... It's kind of a stepping stone from regular DD services (which he now receives) to CES. Through the program we can request a fairly substantial amount of money (I'd receive a check each month) to pay for allowed expenses having to do with M's disability.
It sounded great at first... they'll pay for respite, evaluations and assessments, maybe some educational materials, etc.
The catch is that because it's a new program, it will be audited. So I HAVE to spend the full amount each month (I can't save it to pay for something big, or hold it over from a month when we don't have many expenses to a month when we do), I have to have receipts for everything, I have to have letters from doctors documenting the need for the things I spend the money on, and the money can only be used for M. I understand all the rules, but we haven't even started the program and things are already seeming way too complicated for me.
Respite for example... I've called a couple of respite agencies and they are happy to come out and provide respite for M. One agency will cost a little more than we are given by DP (they charge $26. per hour).... and that's only for M. They will not watch R as well unless I pay another $26. per hour for her. That has to be paid out of pocket because we aren't allowed to use any of the DP money for R ... even though she qualifies for DD services... because she doesn't actually receive services, she's still on (yet another!) the waitlist. So I either take R with me and leave M at home (which doesn't sound much like respite to me!) or I can't afford to use the respite funds.
They will pay for educational materials only with a letter documenting the materials are needed because of M's developmental disability. So... I first have to make an appointment with an educational consultant, have her assess the situation, get her recommendations, then get a letter from her stating those recommendations... only then can I use any of the funds for school stuff.
It's starting to really stress me out. I don't want to find myself in the very strange position of feeling like I have to spend X amount of money quickly, before the end of the month, because of this program. I can guess there would be times when I'd be leaving the kids for an afternoon (oh, and I forgot... the respite has to be done in 4 hour blocks, nothing less) not because I had anywhere to go or anything to do, and when I'd really rather be home doing school or playing outside, just to spend the money. (And then I'd feel guilty for wasting state funds... money someone else could have REALLY used.)
So I'm thinking about turning the money down. Keeping things as they are...
Every mental health professional I know would think I'd lost my mind (LOL, in a clinical sense of course!) The concensus seems to be that I NEED respite to continue to care for M at home. And granted, there are days when I'd give anything for a short break from the constant vigilance, the food obsessions, and the conversations that don't make sense... But it seems like this program, which is designed to help families, might end up being more stressful then having no respite.
sigh.... I don't know what to do. This whole situation is making me crazy.
I'm interviewing a respite provider today, after that I think I'll put this on hold for a day or so... maybe taking a break from it for awhile will help me make a decision.
Anybody have any advice or suggestions?