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Cindy D. Perkins @CindyDPishere
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THREAD: This week has been hectic for me, in part because of learning about Medicaid in IL, & coverage of "supportive care" for people under 65. The limitations are horrendous. I still don't know them all, but here's what I've learned so far--the hard way. /1
There are TWO TYPES of Medicaid. I don't know if this applies just to IL, but some research has told me it's the same in other states, just using different terms. In IL, there's "community Medicaid"--the standard version--& a form that applies only to "supportive care homes." /2
You have to be careful not to confuse "supportive care" with "assisted care." In IL, the second type of Medicaid only applies to "supportive care" facilities. Many of those sorts of places advertise as "assisted care" because they do not take Medicaid. /3
And while there are many supportive care facilities in Bloomington-Normal for people 65 or older, there are NONE for people ages 22-64. (And no one has mentioned places for people under 22, so I feel for them greatly!) I'll have to move into a place in Peoria or Champaign. /4
Peoria is 45 min from my home, & Champaign is 60 min away. The distance to the actual supportive care facilities is unknown to me at the moment. So when I thought I was moving last January to be close to my family, turns out it wasn't going to last long. None of us knew this. /5
The information on all of this had to be dug out in pieces in consultations with my medical team, ALS chapter reps (who crazily enough knew nothing about the under-65 supportive care Medicaid!), & a "community services" lawyer, none of whom could put all the pieces together. /6
We consulted the lawyer because I was denied Medicaid. We wanted to have all our ducks in a tow for the appeal. She told us I was denied in part bc of savings over $2,000 & access to my husband's own meager assets from 401k turnover into an IRA/annuity. /7
The other part of the denial was that the combined income from my husband's Social Security & my own Soc Sec Disability was $1,370 over the poverty level for a household of 2. Let me tell you, our SS is tiny. Even if I didn't have ALS, we'd be struggling mightily! /8
In order for me to qualify for a Medicaid spend-down program, I'd have to be rid of ALL savings, my husband would have to sacrifice his IRA, AND I'd have to spend over $1,300 a MONTH on med expenses! That means I'd have to spend *over* my entire SSD income on med expenses! /9
This info came from the lawyer. She did not spell out a crucial piece until I started crying and asking how on earth I was going to afford supportive care or even skilled care. Then, "Oh!"--well, when you go into supportive care they apply for a *different* type of Medicaid. /10
She didn't give us the legal terminology for it. She didn't tell me that my age was crucial in finding a facility. But she did say that even if I just used in-home med assistance that that would apply to the Medicaid spend-down. Which likely would cost more than $1,300 a mo. /11
She also said we wouldn't actually have to pay the $1,300 ourselves if Medicare covered any of it--such as 80% of the very expensive wheelchair I'm getting fitted for next wk. (And I'm EXTREMELY lucky I got that apptmt next wk--otherwise I couldn't till Jan.!) /12
But this lawyer didn't explain any of this till my dad & I started asking very specific questions. I'm still stunned that she didn't spell all this out on her own. She even at first said I should've gotten Medicaid simply bc I was on disability--then had to google to learn.../13
...that automatic Medicaid only applied to end-stage renal disease disability. This woman was supposed to be an expert on all this--but she had to google for something that basic?? Imagine sitting through this in her office. 🙄 /14
She didn't explain that my age mattered in finding a supportive care facility--she just told us there were only the 2 in Peoria & C-U. The next day I called a local supportive care facility & *they* told me about the age qualifications. This piecemeal info is nuts. /15
Why did the Medicaid office & web sites not have this info? Why did the ALS Association not give me this info? Why did the ALS med "team" not have this info? Why did I have to dig all this out on my own over a period of months? And I'm sure this isn't all! /16
And one more thing: neither Medicare nor Medicaid cover voice banking for #ALS patients!!!!

I have access to some free apps to do it with my smart phone, which can later be downloaded onto another device, which will cost $$$. But that's it. UNREAL. /17
If I won the mega-millions Power Ball lottery, I'd start an organization specifically to advise #ALS patients under age 65 on ALL of this stuff and more. I'd start a fund to help pay expenses specific to ALS. The fact that there is no easy access to this info is insane. /end
ducks in a *row

Good grief, Cindy, proofread!--(I'm silently yelling at myself)
P.S. and I have no idea how long the waiting lists are for these only-2-in-the-region-for-ages-22-64 supportive care facilities! Or what their quality of care is! Can you imagine having this awful, progressing-till-death disease, having to search the equivalent of caves for help?
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