Well, Boo will shortly (4 months) be 18. husband and I have been hemming and hawing about guardianship and SSI. Unfortunately, I think we have to get guardianship in the short term if only to protect him from the SD and early "graduation" and other such malarky. It's not something I want to do because I think he is perfectly capable of making decisions - around here we've been letting him make some fairly significant life decisions for the last year or so. But because he has no reliable method of communication, at least verifiable method (written or being able to verbalize his wishes without prompting)... I feel like we have to make sure we're still *legally* required to be included in the decision making process just to make sure he's not taken advantage of. I hope it will be a short term thing because it feels like we're short changing him.
He will be covered by husband's insurance until he's 25, at least. After that age, it's on a case by case basis and I'm cautiously optimistic we'll be able to carry him until husband retires (in 19 years, LOL). So we don't need Medicaid (not that any of his current docs take it). The cash associated with- SSI, while it would help, is quite frankly a drop in the bottomless bucket that is Boo's medical expenses and I'm not sure I want the hassle of the yearly accounting. Plus, and this may sound dumb, I feel like we can take care of our own (knock wood). We've managed this far without help, we can keep on.
I know IL state programs play funny money with- Medicaid/SSI funding (ie you have to have Medicaid and SSI to receive services), but even though he will become "eligible" at 18 for state services (PCA, workshops, etc.), the reality is absolutely nothing will change. We will not be able to get help in the home thru the state and the only living arrangements for adults as involved as Boo is "group home" settings of 16 or more - institutions in my dictionary. Not an option. The ramifications of the Olmstead decision (essentially LRE for adults) may never hit IL.
Long term goals are once thank you loses his funding thru IL (upon HS graduation whenever that may be) for MH services, we're outta this state. The idea is a move to a more daughter friendly state, one that funds if not actually fosters community living settings.
Impossible for me to present this unbiased, LOL. But is there any conceivable reason that we should consider applying for SSI for him? Approval is a slam dunk - quadriplegic, nonverbal, visually impaired young man, no ADLs, requires total care. But... I just *really* don't want to do it.
He will be covered by husband's insurance until he's 25, at least. After that age, it's on a case by case basis and I'm cautiously optimistic we'll be able to carry him until husband retires (in 19 years, LOL). So we don't need Medicaid (not that any of his current docs take it). The cash associated with- SSI, while it would help, is quite frankly a drop in the bottomless bucket that is Boo's medical expenses and I'm not sure I want the hassle of the yearly accounting. Plus, and this may sound dumb, I feel like we can take care of our own (knock wood). We've managed this far without help, we can keep on.
I know IL state programs play funny money with- Medicaid/SSI funding (ie you have to have Medicaid and SSI to receive services), but even though he will become "eligible" at 18 for state services (PCA, workshops, etc.), the reality is absolutely nothing will change. We will not be able to get help in the home thru the state and the only living arrangements for adults as involved as Boo is "group home" settings of 16 or more - institutions in my dictionary. Not an option. The ramifications of the Olmstead decision (essentially LRE for adults) may never hit IL.
Long term goals are once thank you loses his funding thru IL (upon HS graduation whenever that may be) for MH services, we're outta this state. The idea is a move to a more daughter friendly state, one that funds if not actually fosters community living settings.
Impossible for me to present this unbiased, LOL. But is there any conceivable reason that we should consider applying for SSI for him? Approval is a slam dunk - quadriplegic, nonverbal, visually impaired young man, no ADLs, requires total care. But... I just *really* don't want to do it.