what is the best insurance for people with Cystic Fibrosis

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IG

Guest
To go on what Purplelungs was saying.
Texas recently passed a law that states even when a company policy states that 'a child [anyone under 18 maybe it's 21] when reaching a certain age is ineligable to stay on the insurance' It forces the company to this 'a child who is disabled can stay on his or hers parents insurance indefinately as long as the policy holder resides within the state of texas' That is a very <i>very</i> loose translation of it but that's the jist of things. Ask your clinics social worker for more info, she should have it. I discovered this in the process of moving/trying to find financial aid for school.

I'm currently getting on my grandfathers insurance [since I am/was a dependent] as a secondary back up since SSI is trying to kick me off of their program due to having had a lung transplant [yay] yet still being about 3 degrees short of deaf. <img src="i/expressions/face-icon-small-sad.gif" border="0"> woo fun.

I wish the govn't had a special section that has people knowledgable about CF dealings and we don't have to go through things like this over and over again. Once is enough people. Well if wishes were horses beggers would ride, as the saying goes. Can't have everything.
 
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Lilith

New member
My mom works for the federal government, so she gets the better insurance plans. In fact, that's one of the reasons she wanted to work for the government in the first place. I'm on her Blue Cross Blue Shield plan (which can't be cut because of my disabled status), and on Medicaid. To the OP, they should NOT have dropped you and I would investigate that further. Sounds fishy to me...
 
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julie

New member
Candice, are you having trouble qualifying for SSI based on a combination of CF issues and hearing issues? Are you aware that there are CF qualifying impariments (3 of them for adults), although I am not sure about the deaf impairments? If you don't meet any one of the three impairment listings, but you come close on one or two of them, and then you throw the hearing issues in there... you should more than qualify. Let me know if I can offer you some more specific pointers/guidance.... division902@hotmail.com
 
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IG

Guest
Actually the thing with SSI is this.
It's a double-edged sword. In order to qualify for financial aid I have to be a full time student.
But SSI's view point is that I, being a full-time student, should be able to work as well.
Given the fact that i've had a double lung transplant, seem to be 'better' and not as impaired, from what I understand.
As for the deaf thing, i'm not sure what the limit is on deafness, I'm not legally deaf, but I do have to register with the office of disabilities [and use hearing enhancing equipment in the classroom]. We're currently looking into that, PA requirements for deafness/HoH qualifying me for SSI. I don't want to stay on it indefinitely, but given my hearing loss it's hard for me to get a job unless it's very specialized [i.e. law] which is my goal [law school]. I'm not sure if there's much more we can do/if I qualify for but I'm up for suggestions.
 
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supermanfan

New member
I have Kaiser, and I'm still on my parents insurance at age 36. What we did when I was 22 was petition for them to keep me on since I was listed as a disabled person. My doctor wrote a letter stating that at any point in time I could become unable to work, and hold my own insurance. They accepted it and now after 8 years nearly 9 post transplant I'm still on my partnes policy. Perfectly legal, and ethical. I just happen to be doing well with my health, but again with my transplant I could still have issues tomorrow, just like I could when I still had my bad lungs.

Good luck!
 
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anonymous

New member
Our daughter with CF is 25 and is able to remain on our insurance indefinitely (as long as she lives with us) because she is considered disabled. We have Humana insurance which she continues to receive from my husband's employer. However, we were told that if she ever moves out on her own that she is no longer eligible.
 
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rose4cale

New member
Hmmmmm. This is all very interesting to me. We've been thinking about all of this, even though our son is 3. What the future insurance issues may be. I had no idea that he could possibly stay on our insurance after college. Thanks!
 
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CFmama1886

New member
Hi... Im a mom with a 19 year old living in washington state. We are going through the same process right now. It seems like they have one over on you unless your a medical lawyer. Not sure how the SSI systems works... told my daughter she didnt work long enough to collect. Working on getting medicaid... if you have had any luck... let me know!! getting nevrious here her medical has always been covered by military insurance. HELP! doxyfan2000@cs.com.
 
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julie

New member
Maryjoe,

There is SSDI which is based off of your dauhters work history and payment into the social security system.

SSI is based off of your daughters income (to include someone she might live with)

I am kind of the Social security guru around here and would be more than happy to help you out with this! Feel free to email me at division902@hotmail.com
(we just won my husbands SSDI case in December 2004 after over 27 months of fighting with it, finally going to court and winning our case)

Whatever you do, DO NOT REAPPLY. APPEAL, APPEAL, APPEAL, APPEAL the denial!!!!!!!!!!!!!!! That way, if she ever does "win" her case, they will owe her back pay.

Please do email me as I would be more than happy to assist you/your daughter.
 
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