SSI ? Victoria

Discussion in 'Lyme Disease Archives' started by redsox10, Dec 2, 2006.

  1. redsox10

    redsox10 New Member

    Hi Victoria,

    I am thinking of having my daughter apply for SSI. She will be 18 in Jan. She will still be covered under our insurance.

    Why was your son turned down? Do they count household income? Has your son gone to VESID?

    Please keep me up to date with the HBOT. I am interested in it for my daughter.

    Thanks,
    Janet
  2. victoria

    victoria New Member

    Actually I know some kids can get SSI if disabled before 18, not sure how that works; but definitely once they're 18. I'm not sure about how they look at it if your private insurance will still cover her... and/or exactly how to phrase it when she's living with you and you claim her as a dependent.

    I think they will still disable her, but not sure about the ins & outs. You might want to consult a SSD/I lawyer, most lawyers do not charge anything for the initial consult. Plus they do not get paid even if you sign up with them right away until/if the settlement is received... it can be worth it for peace of mind.

    The 18-21 age group is a group anyway that is difficult for me to understand the technicalities about... have found they can qualify for certain things that people over 21 cannot. (Part of this extra stuff, if not all of it - not sure - depends on your state's regulations; they get some say in how much gets covered in these extra programs for this age group.)

    I do know that despite what a SS rep might insinuate or even say, at 18 your child is considered an adult whether they live at home or not, or are even in HS. Your income/assets do not matter once they're over 18 for sure.

    They also try to act on the phone like they're taking into account if you are helping to support your child or not ... do it on a loan basis, as you should be paid back by the settlement once your daughter gets SSI. This is something they try to use to try to make you think she'll not qualify right off the bat, and is infuriating... they act as if you have to make your kid homeless or something.

    They turn down most everybody the first time for SSI and/or SSD, but especially young people ... takes about 4-6 months for the initial determination...

    And as soon as that happens, she'll get a Medicaid card. Until then, because she 'might' qualify for SSI/Medicaid, most other charity programs will NOT help, not even patient assistance programs thru drug companies to get help with RXs. At least that's what I ran into.

    When she gets turned down, it's worth getting a lawyer at least then so s/he can present it when it comes time to go to court for the hearing for the appeal... in the meantime SS will ask for updates every few months so they can determine how long she's disabled if/when she does get it.

    My son's disability was dated back to age 18 as we had initially contacted them shortly after his birthday (his dx of lyme was 2 months prior to his b'day), altho we didn't go ahead with the application til about 5 months later;

    (he wanted to at least try to work. His working full time for a few months didn't count against him as he didn't make over a certain amount - pretty hard to do at minimum wage anyway).

    I also did not let him go into a personal interview or interview over the phone personally, as between his memory problems and his trying to dissociate his problems by minimizing, his answers were likely to be minimal at best, and misrepresented by SS;

    I filled out the forms online with him, then printed them out, and I acted as his rep alone at the initial filing in person at the local SS office (he did not have to show up).

    Why? Because, besides the cognitive and memory problems, my son is one who doesn't 'look sick' on the surface; and it's just as well he didn't show up, as the SS rep told me about her SIL who had Lyme but was working because 'she had to'...

    grrr she didn't understand that people reach the point they can't or shouldn't be...

    As it was, he actually got a "denial" letter from SS BEFORE the actual interview and/or official application even took place, just based on my initial answers to the SS rep on the phone in order to set up the interview!!! I think they pull out all the stops to try to make you give up.

    When he was turned down, it was not on any specific reason, just that they didn't find him disabled based on the doctors' records (even tho his doc did a narrative report about chronic lyme supporting disability, as did his psychologist).

    However, the thing SS will (usually) tell you tho, is that if you or her father are receiving SSD, she will receive the higher amount (usually what a parent is receiving) if granted SSI.

    There are also programs for that age group of 18-22(?) who get SSI that helps them go to school or set up a business or whatever... the SS site has all that info online too, it is quite interesting and you need to read it because it's likely NO caseworker will EVER tell you about those special breaks.

    I don't know what VESID is, tho? Is that something within your state?

    Georgia does have 2 state programs that "children" 18-21 can qualify for in addition to Medicaid... that age span is a real grey area as whether one is considered an adult or a child. I found one program he didn't qualify for because he did NOT live at home and another he did qualify for because he DID live on his own...

    Well, stupid is as stupid does, and gov't bureaucracy is the worst all too often, imho!

    Hope this helps?
    Victoria



    [This Message was Edited on 12/03/2006]
  3. redsox10

    redsox10 New Member

    Thanks Victoria for all theinfo. I am going to look online today.

    VESID is a vocational service for the disaabled. I am hoping she qualifies for funding for college. She has been doing so poorly lately that I hope she can go to school part time next year. Maybe it is just a NY service.

    Has your son been on Tindamax? Liz has been very ill since starting it. Very discouraged.

  4. victoria

    victoria New Member

    Does your daughter have babeosis? I had to look the drug up, drug.com said "Tindamax is an antiprotozoal drug, which is used to treat certain types of parasitic infections, including intestinal parasitic infections giardiasis and amebiasis, and amebic liver infections."

    My son did try metronidazole--- (sp?) however (the RX that is for malaria, also kills babeosis), to see if he reacted, as all the tests for co-infections were negative. He had no reaction/herx to it.

    We then tried the abx for bartonella, and he herxed a LOT... so that is what we suspect is at least one co-infection... altho he had to back off the medication as the herx was too much and we also felt he started to get an adverse reaction to the abx as well on the second pulse

    This constellation of infections seems to be all too often too much like cancer... difficult to choose what course of treatment one follows... and never knowing if it is enough to kill the bugs or not, along with taking the chance of the drugs in the meantime harming the pt.

    best,
    Victoria