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I am Starting to wonder!!! need your help!
- Thread starter anonymous
- Start date
MullMuzzler
New member
I did'nt have time this weel to make it down there..i will ASAP! LOL. Julie...i was wondering how is your husband doing? is he able to work?
He could probably work a part time job, 2-4 hours a day 2-3 days a week, but that isn't "full time" so we have applied for social security disability for him. He is also a student doing internet classes, which work much better for him than having to attend the university. When he was going to the campus, he was missing a lot of school and had to drop a lot of classes. This is his first semester doing online classes and he is doing so good! His plan is to hopefully work part time with his degree, at least having a degree will get him more money that right now without one. We have a Social security hearing on December 10, not really sure what to expect from that. Did you have one, if you did, what type of questions did they ask?
Let me know how things go, I am curious to find out what they have to say about all the things we talked about.
I'll stay in touch too, let you know how things are going for us.
Take care,
Julie
Let me know how things go, I am curious to find out what they have to say about all the things we talked about.
I'll stay in touch too, let you know how things are going for us.
Take care,
Julie
To everyone out there concerned about medical coverage.
Beth Sufian, has cystic fibrosis and is an attorney. Beth living with cystic fibrosis has dedicated her professional career to advocate for all those with cystic fibrosis. Beth gave a virtual webcast via the Cystic Fibrosis Foundation regarding medical coverage and state issues.
Beths lawfirm is: Sufian and Passamano in Houston, Texas. The webcast should be archived at the Cystic Fibrosis Foundation and anyone needing legal assistance should contact Beth or the Cystic Fibrosis Foundation for addressed and/or telephone numbers.
Beth Sufian, has cystic fibrosis and is an attorney. Beth living with cystic fibrosis has dedicated her professional career to advocate for all those with cystic fibrosis. Beth gave a virtual webcast via the Cystic Fibrosis Foundation regarding medical coverage and state issues.
Beths lawfirm is: Sufian and Passamano in Houston, Texas. The webcast should be archived at the Cystic Fibrosis Foundation and anyone needing legal assistance should contact Beth or the Cystic Fibrosis Foundation for addressed and/or telephone numbers.
I have contacted her, two months ago and once a week I get an email saying she willl call me on such and such a day, but never has. I understand she is volunteeing to help me out and has no obligation to call me, but I wish she would quit getting my hopes up, I spend hours waiting by the phone. Do you think I should call her?
Emily65Roses
New member
My mother and I have dealt with Beth for over a year now. She's very nice. And yes, you're right she is volunteering her time to help CFers out. But I don't think she's ignoring you on purpose. She's VERY busy. I'd say try calling her again.
Emily65Roses
New member
I don't think it'll hurt to call. Give it a try.
MullMuzzler
New member
Julie...do you have a instant messanger? like Yahoo, or AIM? it would be alot eriser to talk one on one i think.. LOL. That way you can ask me things and i will answer them the best i can.
MullMuzzler
New member
Julie..If your Husband is applying for SSD im pretty sure he has to have his Work credits paid in. If he was applying for SSI he will get that no matter what. I was not able to get SSD due to the work credit things. I applyed for SSI when i was 18 and did'nt get it untill i turned 19. They have a certain ammount of months to hold out on you..meaning(hoping you will die) before they have to pay. So i got a back pay check...of course for the years i did wotk they deducted every back pay check they could. I did have to have my docters fill out a TON of paper work along with a TON of stuff my self. I did have to go to some Mental Docter, they send you to one to see if your even capable of understading life,how the system works,and lif its self! It was REAL STUPID! they would ask me stuff like..Who the presedent was,what color green was, whats 5+5, what a table and chairs had in common, whats a 10 dollar bill worth. and show me some pics and what i thaught they ment. Other than that it went over good and i am still on SSI and Medicaid. if you have any more questions you can ask me anything.
My hubbie does have enough work credits to qualify for SSD, and I make too much for him to qualify for SSI. It's amazing what they deem as "too much". We origionally filed for SSD and SSI in October of 2002. They denied it so we requested a reconsideration, they denied that too. So now we have a hearing scheduled for December 10. and it's been 27 months since we started this thing, 20 months since we requested a hearing. And he hasn't worked since we filed.
One of the criteria for Cystic fibrosis is that you have to have cronic, recurrent pulmonary infections requiring nebulized or intravenouse medications at least once every 6 months. for the evaluation period that they are looking at, my husband had a lund infection every 3-4 months that required TOBI, so would that automatically qualify because he meets that one criteria. He doesn't meet the other criteria (height, Low pfts...) but we are having him tested for sleep apnea right now, and no dobut his appetite is an issue because he eats about every 2 hours regardless, I don't know any employer who is going to put up with someone needing a 12-30 minute snack break every 2 hours. And he is so tired during the day because he doens't sleep more than 2-3 hours strait a night, and he is unable to focus for very long-all signs and symptoms of hypoxia from sleep apnea. And the social security rule specifically states that just becaus someone doesn't meet the criteria, doesn't mean their claim is denied. They have to gather all the effects that CF has on a persons body and determine if all those combined are as "bad" as one of their criteria.
I am surprised that they haven't sent him to one of their doctors yet. they also aren't calling a medical expert to our hearing, just a vocational expert. Our lawyer said that leads him to believe that they dont think much about our case. I don't care what the administrative law judge thinks, hes not a doctor. We had our lawyer request one to be at the hearing to interpret the things the judge might not be able to understand.
What do you think? Any other advice, from you Jim or anyone is welcome.
Thanks,
Julie
One of the criteria for Cystic fibrosis is that you have to have cronic, recurrent pulmonary infections requiring nebulized or intravenouse medications at least once every 6 months. for the evaluation period that they are looking at, my husband had a lund infection every 3-4 months that required TOBI, so would that automatically qualify because he meets that one criteria. He doesn't meet the other criteria (height, Low pfts...) but we are having him tested for sleep apnea right now, and no dobut his appetite is an issue because he eats about every 2 hours regardless, I don't know any employer who is going to put up with someone needing a 12-30 minute snack break every 2 hours. And he is so tired during the day because he doens't sleep more than 2-3 hours strait a night, and he is unable to focus for very long-all signs and symptoms of hypoxia from sleep apnea. And the social security rule specifically states that just becaus someone doesn't meet the criteria, doesn't mean their claim is denied. They have to gather all the effects that CF has on a persons body and determine if all those combined are as "bad" as one of their criteria.
I am surprised that they haven't sent him to one of their doctors yet. they also aren't calling a medical expert to our hearing, just a vocational expert. Our lawyer said that leads him to believe that they dont think much about our case. I don't care what the administrative law judge thinks, hes not a doctor. We had our lawyer request one to be at the hearing to interpret the things the judge might not be able to understand.
What do you think? Any other advice, from you Jim or anyone is welcome.
Thanks,
Julie
I am from Mississippi, and I think that MS has one of the best insurance programs there is. We have Children Medical Program. Any person in MS with Cystic Fibrosis or any other chronic illness can be approved. It does not matter what your age. All you have to do reapply every year.
MullMuzzler
New member
Julie...it sounds like you guys have been through alot too! I was never Denied they just did'nt pay up until like a year and a half later. If your husband filed back in 2002 and this time around they take him he's ganna get a FAT CHECK!! LOL. As long as he didn't work after you first filed! you will be set! If you two would'nt have gotten married he would have gotten SSI for sure! thats why i cant get married.
If he gets Denied again i would be VERY PISSED OFF thats BS!! he needs this! i hope all goes well! you guys deserve this! and he has every penny coming to him! GOOD LUCK!
If he gets Denied again i would be VERY PISSED OFF thats BS!! he needs this! i hope all goes well! you guys deserve this! and he has every penny coming to him! GOOD LUCK!
Jim,
Hi, I am a 23 yea old army wife with CF. Tricare does cover all my medical expenses, plus I am on the special family memebers list where my husband will never be staioned where they can not care for my cf. Please feel free to email me at armywife22@excite.com. I have been covered for almost 3 years and never had a problem.
Alisha
Hi, I am a 23 yea old army wife with CF. Tricare does cover all my medical expenses, plus I am on the special family memebers list where my husband will never be staioned where they can not care for my cf. Please feel free to email me at armywife22@excite.com. I have been covered for almost 3 years and never had a problem.
Alisha
MullMuzzler
New member
I have to eat all day too! i am always hungry and i even have a feeding tube! LOL. I also take TOBI Every other month.
MullMuzzler
New member
Alisha...thats great! well that makes 2 ppl with CF on here that are covered by Tri-Care. I am glad it has worked out for you! with no problems!
Julie it seems like you have all your bases covered. I'v been to a hearing before but it was for my brother who is mentally ill. He had a head injury which lead to pchysofrenia 6 years ago. I know that's not how you spell that. Hee Hee. That's what made it hard because he used to be normal. It took us 2 years as well. Anyway it was very informal and there were 3 people sitting across from us on a bench like a judge sits but smaller. It was kind of a relief really because your actually facing these people instead of trying to make them understand on paper they can actually see for themselves what a person goes through. They primarily ask the same questions that you probly wrote a million times while trying to apply. My mom and I really just poured our heart out to them just letting them know his day to day. what he used to do before his incident, and making sure they understood that he needs help still and all his meds, any reactions to them. Take documentation. such as dates, appointments etc.. It's easier to remember. The only thing else is they asked us of anything new since we filed and let them know that. But any dr statements are helpful because I didn't feel at our hearing they were even in the medical field, so I think it's great that you requested a medical prof. I wish you the best! Eva