lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
For all of you lucky or unlucky ones that have gotten this for help....
My daughter now has a ss disability but the Drs that have saved her and kept her alive are not allowed to be providers under the state's access/medicare services.
The main reason to try to get the disability was to keep us from the "poor house" but now the help will not allow the life saving Drs..
And I understand that for most people this would be absolutely wonderful but we are not just dealing with lyme and co-infections..We have life threatening issues.
Any positive comments or suggestions would be appreciated..
We also live on the state line and recently found a new,primary care physician but she is on the other side of the line..5 minutes away..The only other Dr has never really taken care of any of the major issues affecting our daughter..
I am very frustrated and almost wish I had won the lottery instead of this. Then we could continue with the llmd and llpsych..
Posts: 2360 | From SE PA | Registered: Mar 2004
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bettyg
Unregistered
posted
If I understand this correctly,
Your daughter was APPROVED for SSDI, disability insurance benefits.
Now whoever you were going to is NOT allowed to treat her; is that right?
Hogwash! 2 things come to my mind:
1. Call your LOCAL state senator's office, both republican & democrate, telling them what you've told us. Ask them to get involved.
2. Call your LOCAL SS office. Ask to speak to the director of the office. Verify with that person that this is correct, and ask them what alternatives yoy may have. Good luck, and report back ok.
3. Check Treepatrol's newbie links; look for MINOUCAT'S insurance issues/disability. You may find something there.
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Thanks Betty...
We are pretty new to this game but currently her llmd drs are not in our network..But we go, get bills and then submit and our current insurance will pay a portion of the bill.
WE must now choose between 3 insurance carriers that are offered with this state program..We must choose a primary care dr in state. And that Dr will do any needed referrals to in system Drs only..
I am still digging and will research further but using the elected officials is a good suggestion..We have already worked with them. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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bettyg
Unregistered
posted
Mom, I don't know anything about your type of situation! I've not been there YET, but I'm making an appt. w/LLMD out of state who does NOT accept insurance/medicare ... so guess I'll learn the ropes on that too.
Keep us posted about what you learn to help others & me in future! Bettyg
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Most of the primary care Drs,( and none listed are less than 20 miles from us), are not taking new patients.
From what I can understand, we must first pick a new primary care physician and then one of three insurances that the state offers..The PCP then makes all decisions about specialists..And since our daughter is not CDC positive, that will leave us in the cold..
Also her llmd and llpsych, who have saved her life, are not on any of the plans so they are not allowed..Now we can go out of pocket 100%, and hope to have enough money for all, but our current PCP says that there would be another problem if the lyme drs order any tests or meds, they would not be covered..
So good luck if your PCP has not referred you..Expect to have to pay it all out of pocket with no reimbursement..
Posts: 2360 | From SE PA | Registered: Mar 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
does she have medicare?
I am disabled with medicare primary
medicaid secondary(because I am so poor I get medicaid too)
Medicare never made me see a primary dr.
and neither has medicaid.
The only dr. I pay for is my llmd. and they cover they blood tests he orders.
Is her insurance through disability or through you?
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Hi LMT. Mostly I'm just sending you a big hug. What an unending ordeal this has been.
Here's a link to my disability links posting. Hope you can find something here that helps. I think DSINissues is probably your first stop -- the moderator there is extremely knowledgeable.
I hate to suggest further out of pocket expense, but I also think you're at the point where you need solid legal help, or some kind of very experienced advocate. You're in the twilight zone here, and common sense does not apply.
I think BettyG's suggestions are very good, too. You never know when you might run into a staffer who has just the right knowledge and connections to help you.
Having fought my own battles with insurance etc. I know how exhausting, frustrating, and upsetting this kind of effort is, especially when you're not well. My best wishes are with you.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Cat and Betty, thanks for the help..It is a twilight zone alright..NOw my daughter who has some impaired cognitive skills and memory loss thinks I am stealing her money and picking Drs and medical plans that she will not like..
I have given her the material and it sits, so by next Thurs, if she has not made a choice, the state, or county will do it for her..I am at the point of allowing baptism by fire to occur.
It was determined by SS that I was to be in charge of her spending due to her medical reports, etc..So I am documenting every dime and even saving receipts for the $100 plus so far we have spent and not used her money for reimbursement....
She is so unaware of the real world and expenses..So she will see all of the bills.
She plans on moving in with a boy she has dated for a month..He is not very flush with money so "they" think the ss money will be the trick to help make it work..She says they have found some apartments that are only $200 a month..I think they are inner city..
Yes, Cat, you know these last three years have been an ordeal..So I am dealing with so many issues, I do not know where to start..I also am personally having some nasty eye issues so my reading is a bit limited..But I will look at all of the info you guys have sent..
She has been so sick for 2 days and in bed but has "arisen" to go out partying all night with her new found beau..NOt that I am opposed to her getting out and being with friends..
She has gone without so much for so long,but I am very fearful of the possibilities of such a rushed relationship..She never had a chance to have crushes and the group dating that her friends experienced..She was just too sick or in hospitals..So first dates have become mature relationships..
I wish with turning 18 and now 19,that they gave out maturity and some reasoning with this new found independence and defiance..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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bettyg
Unregistered
posted
LMT, Oh no; I see Alzheimer's/dementia with the extreme paranoid behavior that you are stealing from her.
YOU ARE THE BEST MOM EVER!
As Minou & I both suggested, go the DISINISSUES site, and how about copying ALL YOUR comments from here....NOT OURS OK... and send in a PRIVATE note to Sarah Shapiro, moderator.
fyi, Sarah is NOT a people person on the board since there are between 1500-2000 members. It's NOT A SUPPORT BOARD, but an educational one with files/links for you to read, etc.
They have 2 ERISA who post there & I believe they are mentioned in the LAWYER'S section of sites...
Best wishes, and DON'T GIVE UP! Bettyg
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