I had worked prior to my husband illness, but at time he first became ill, I had not worked for a little over a year ((was going to be a stay at home mom, LOL) As soon as he first got ill, I did go to work immediately....altho at first we did not realize HOW ill he was. I continued to work until my disability becuz, as I am sure you know, it is VERY hard to exist on soc sec disability, especially with children and becuz in our case, we also would not have had medical coverage unless I worked, becuz my husband soc sec benefit was just barely over the income cutoff guideline at that time......SOoooo while HE did eventually get Medicare (after 2 years) the rest of us were left with NO coverage.
Then when I became disabled, I lost the medical coverage until MY Medicare kicked in but, still, the kids could not get Medicaide becuz our income was $20 a year over the income cut off for Medicaide
For us, the good part is that eventually finally my husband military disbility kicked in, and around the same time my Medicare kicked in, so did his military benefits, and with that came ChampVA coverage for me and for the kids.....
Ya know, actually I think it was the SSI they denied my dtr becuz they said they were going to continue her as a dependant of my husband? DUe to having been disabled before age 18? I know the VA is also processing her continuing benefits with them as a "helpless child-disabled prior to age 18"? We did NOT have to do a guardianship hearing, and they made us her representative payee based on her being disabled prior to age 18 and that they are simply continuing her as our dependant? (she continues to live in our home, and for financial situation, they said it should continue basically very similar to how it has been all along with her check- we will still get it and we will still "take care of her" just as it has been all along?) BUT if she moves out of our home, THEN it will be done differently? I think THEN they said we would change to SSI? (and possibly a reduction in how much her check is?? go figure?)
LOL, I am kinda lucky at the moment, I feared her reaching 18, feared hearing the dreaded "I am 18 now" out of her mouth? Well so far, she still ACTS as if she is not 18..........the other day, LOL, she asked permission to use the "s" word when she sang a song that has it in it, LOL.
BUT it IS a financial hardship doing without her checks......and until the VA stuff also falls into place, she is going along with no medical coverage, no medications, and it IS hard running a household on soc sec for 5 with only the benefits for 4. (aw heck, it was hard running it even WITH the benefits for 5) Partly like I said becuz our soc sec is $20 over the income cutoff for low income help. Sure her money will come with the back pay but....like you said- what about in the meantime? My big fear is she will get sick or hurt. MAYBE the benefits will go back and cover it back to the time we applied, but........cannot fill any medications right now this way. and the groceries are getting slim. House payments and utilities do not want to hear- "it's coming"
AND IIRC if back pay reaches a certain dollar amount then there are different rules etc about how you use it and apply it to things. (I cannot remember for sure..but I think even "back rent" might not be an "acceptable" spending of back pay? Yeesh, go figure)
SO, LOL back last week and week before etc when it was so nasty outside, I told her she could NOT go be in ANYONES car, LOL- lest they slide on ice and she get hurt, LOL. We would be hard pressed to even buy band aides and ibuprofen, much less any more urgent health care that might be required. LOL. ANd her new shoes are awaiting her benefits beginning. Sadly, so are her sisters, AND her brothers safety glasses (for his injured eye) - cuz we are stretched tight due to being short her financial input.
I do remember when I got awarded MY soc sec, at that time soc sec increased the amount of the childrens checks....something related to the fact of both me and husband both being disabled and our income?
I also remember lobbying for health care for families where one parent is disabled, even when you have health insurance at the other parents job, it can be cost prohibitive, and 2 of my kids and myself also had pre existing conditions that excluded us frome being ABLE to buy our own medical insurance. There was a state program for uninsurable people BUT YIKES when I checked that out? OUCH! That was way cost prohibitive!!!!!!!!!! IIRC it woulda been $600 per month at that time for my oldest child and $500 a month for my son, AND the coverage was not that good AT ALL..........with very low payouts for psychiatric and neuro..(very high copays for psychiatric and neuro)
Another logistical problem we have always had is that in our area, very few docs accept Medicaide, and ChampVA.......oh technically the hospitals HAVE to in certain situations, but....reality is....they find ways to wiggle out.
I am SO tired of the busy signal at soc sec, so tired of the unanswered phone, and so tired of sitting IN the soc sec office.
we applied 7 months ago. - we were supposedly approved 5 months ago.
Where is it?
Last week when I went in to soc sec office in person, our rep said if she pulled the file to check? She said then they would refile it back at the very end of the list, making it take even longer? Yeesh.
