SSDI

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alluneedislove

Guest
I was just recently approved for SSDI. Still haven't got any money, but at least i was approved. I applied over a year ago. So they will pay me back pay. If you haven't filed yet i would go through the Cf lawyer Beth Sufian. I don't think it cost you any money if you start with them from the beginning. Wish i would have known that a head of time. I got a hold of her once they denied me 3 times. It still took her a few months to get everything ready but i got approved and thats all that matters. GOOD LUCK!!
 
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Ldude916

New member
I agree, if you're thinking of filing for disability, contact Beth Sufian (you can get her info off the CFF.org website).

If your household makes less than $88,000/yr, she will help you file all of your disability paperwork for free, but you have to use her from the start....don't file anything on your own yet.

Good luck!
 
L

Ldude916

New member
I agree, if you're thinking of filing for disability, contact Beth Sufian (you can get her info off the CFF.org website).

If your household makes less than $88,000/yr, she will help you file all of your disability paperwork for free, but you have to use her from the start....don't file anything on your own yet.

Good luck!
 
L

Ldude916

New member
I agree, if you're thinking of filing for disability, contact Beth Sufian (you can get her info off the CFF.org website).
<br />
<br />If your household makes less than $88,000/yr, she will help you file all of your disability paperwork for free, but you have to use her from the start....don't file anything on your own yet.
<br />
<br />Good luck!
 
J

julie

New member
John, why won't you be applying for SSDI also? Do you know that you can get benefits from a private disability policy as well as the SSA benefits?

My organization, www.dafcf.org also does CF disability filings, and I have no limit on household income to offer FREE assistance. We run off grants and donations from the community, most recently a large one that covers 2011 expenses, from the generous BOOMER ESIASON FOUDNATION <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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julie

New member
John, why won't you be applying for SSDI also? Do you know that you can get benefits from a private disability policy as well as the SSA benefits?

My organization, www.dafcf.org also does CF disability filings, and I have no limit on household income to offer FREE assistance. We run off grants and donations from the community, most recently a large one that covers 2011 expenses, from the generous BOOMER ESIASON FOUDNATION <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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julie

New member
John, why won't you be applying for SSDI also? Do you know that you can get benefits from a private disability policy as well as the SSA benefits?
<br />
<br />My organization, www.dafcf.org also does CF disability filings, and I have no limit on household income to offer FREE assistance. We run off grants and donations from the community, most recently a large one that covers 2011 expenses, from the generous BOOMER ESIASON FOUDNATION <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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TleighsHusband

Guest
Be careful about making your FEV number your whole decider of when you will or will not work. Tiffany continued to work part time but was not able to physically handle full time work when we applied for disability. We contacted Beth at the beginning and followed her directions exactly and got approved the first time in a matter of a couple of months. If I remember right her FEV numbers were right on the border with some qualifying in the last year and some not, but she definitely qualified with the other two. The thing that helped us the most was to remember that they work hard to keep people off of disability because there are a lot of people trying to take advantage of the system. You basically need to do their job for them and clearly show them why you qualify leaving no room for doubt. Using someone like Beth or Julie above who knows the system will save you hours of time and frustration. As a CFer you probably have worked hard at covering up to other people what you go through but you need to let them see it in all its glory and the limitations it puts on your life. It sounds like Julie has some great ideas on how to deal with the income side. Remember also that if you get it and you qualify for Medicare, then that becomes primary and your other insurance is secondary if it is provided through a small company (I believe it is something like under 75 employees) and that should help their insurance costs come down on you. That is also what initially got us moving on Tiffany for disability. Having the secondary insurance though was a huge help in the long run.
 
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TleighsHusband

Guest
Be careful about making your FEV number your whole decider of when you will or will not work. Tiffany continued to work part time but was not able to physically handle full time work when we applied for disability. We contacted Beth at the beginning and followed her directions exactly and got approved the first time in a matter of a couple of months. If I remember right her FEV numbers were right on the border with some qualifying in the last year and some not, but she definitely qualified with the other two. The thing that helped us the most was to remember that they work hard to keep people off of disability because there are a lot of people trying to take advantage of the system. You basically need to do their job for them and clearly show them why you qualify leaving no room for doubt. Using someone like Beth or Julie above who knows the system will save you hours of time and frustration. As a CFer you probably have worked hard at covering up to other people what you go through but you need to let them see it in all its glory and the limitations it puts on your life. It sounds like Julie has some great ideas on how to deal with the income side. Remember also that if you get it and you qualify for Medicare, then that becomes primary and your other insurance is secondary if it is provided through a small company (I believe it is something like under 75 employees) and that should help their insurance costs come down on you. That is also what initially got us moving on Tiffany for disability. Having the secondary insurance though was a huge help in the long run.
 
T

TleighsHusband

Guest
Be careful about making your FEV number your whole decider of when you will or will not work. Tiffany continued to work part time but was not able to physically handle full time work when we applied for disability. We contacted Beth at the beginning and followed her directions exactly and got approved the first time in a matter of a couple of months. If I remember right her FEV numbers were right on the border with some qualifying in the last year and some not, but she definitely qualified with the other two. The thing that helped us the most was to remember that they work hard to keep people off of disability because there are a lot of people trying to take advantage of the system. You basically need to do their job for them and clearly show them why you qualify leaving no room for doubt. Using someone like Beth or Julie above who knows the system will save you hours of time and frustration. As a CFer you probably have worked hard at covering up to other people what you go through but you need to let them see it in all its glory and the limitations it puts on your life. It sounds like Julie has some great ideas on how to deal with the income side. Remember also that if you get it and you qualify for Medicare, then that becomes primary and your other insurance is secondary if it is provided through a small company (I believe it is something like under 75 employees) and that should help their insurance costs come down on you. That is also what initially got us moving on Tiffany for disability. Having the secondary insurance though was a huge help in the long run.
 
J

julie

New member
David, AWESOME point. As I was driving today I was thinking about this post.

Many CFers I have worked with have ok FEV1's, some even have excellent FEV1's but because of the physical toll on the body, the medication requirements (multiple nebulized/IV antibiotics, several times a day) and other CF "care" taht needs to be taken to keep your body in it's best condition, working is just NOT an option. Or at least working full time is NOT an option.

Not to mention, meeting the FEV1 criteria for SSDI is <u><b>THE HARDEST </b></u> CF criteria to meet. MANY people qualify off of 3.04C which is (in laymans terms) a lung infection "diagnosed" by a positive sputum culture, that requires IV or nebulized antibiotics at least ONE TIME ever 6 months. Most people with CF are on IV or nebulized antibiotcs at least 6 TIMES A YEAR. and the requirement is pretty much only 2 TIMES A YEAR.

This is why it is also important to do those darn sputum cultures if you think SSDI is something you will be applying for anytime in the next 24 months. Since TOBI is now also used as a prophylactic (preventative) treatment, if you don't have the sputum cultures to back up the fact that you have an "infection" you are up poop creek without a paddle!
 
J

julie

New member
David, AWESOME point. As I was driving today I was thinking about this post.

Many CFers I have worked with have ok FEV1's, some even have excellent FEV1's but because of the physical toll on the body, the medication requirements (multiple nebulized/IV antibiotics, several times a day) and other CF "care" taht needs to be taken to keep your body in it's best condition, working is just NOT an option. Or at least working full time is NOT an option.

Not to mention, meeting the FEV1 criteria for SSDI is <u><b>THE HARDEST </b></u> CF criteria to meet. MANY people qualify off of 3.04C which is (in laymans terms) a lung infection "diagnosed" by a positive sputum culture, that requires IV or nebulized antibiotics at least ONE TIME ever 6 months. Most people with CF are on IV or nebulized antibiotcs at least 6 TIMES A YEAR. and the requirement is pretty much only 2 TIMES A YEAR.

This is why it is also important to do those darn sputum cultures if you think SSDI is something you will be applying for anytime in the next 24 months. Since TOBI is now also used as a prophylactic (preventative) treatment, if you don't have the sputum cultures to back up the fact that you have an "infection" you are up poop creek without a paddle!
 
J

julie

New member
David, AWESOME point. As I was driving today I was thinking about this post.
<br />
<br />Many CFers I have worked with have ok FEV1's, some even have excellent FEV1's but because of the physical toll on the body, the medication requirements (multiple nebulized/IV antibiotics, several times a day) and other CF "care" taht needs to be taken to keep your body in it's best condition, working is just NOT an option. Or at least working full time is NOT an option.
<br />
<br />Not to mention, meeting the FEV1 criteria for SSDI is <u><b>THE HARDEST </b></u> CF criteria to meet. MANY people qualify off of 3.04C which is (in laymans terms) a lung infection "diagnosed" by a positive sputum culture, that requires IV or nebulized antibiotics at least ONE TIME ever 6 months. Most people with CF are on IV or nebulized antibiotcs at least 6 TIMES A YEAR. and the requirement is pretty much only 2 TIMES A YEAR.
<br />
<br />This is why it is also important to do those darn sputum cultures if you think SSDI is something you will be applying for anytime in the next 24 months. Since TOBI is now also used as a prophylactic (preventative) treatment, if you don't have the sputum cultures to back up the fact that you have an "infection" you are up poop creek without a paddle!
 
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bethylove

Guest
It took me 3 years and a court date to finally get approved. I had pretty decent (around 70) fev1 when I was applying but so many other factors that it was very frustrating to keep getting denied. It took 7 minutes in front of a judge to be approved. It took a long time but don't give up! You have to jump through all these hoops because thats how the weed out the people are trying to 'beat the system'. I'd like to say having a lawyer helped but my lawyer didn't do too much and really couldn't answer any of my questions. I would suggest getting a lawyer who KNOWS CF. I think that's the key.
 
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bethylove

Guest
It took me 3 years and a court date to finally get approved. I had pretty decent (around 70) fev1 when I was applying but so many other factors that it was very frustrating to keep getting denied. It took 7 minutes in front of a judge to be approved. It took a long time but don't give up! You have to jump through all these hoops because thats how the weed out the people are trying to 'beat the system'. I'd like to say having a lawyer helped but my lawyer didn't do too much and really couldn't answer any of my questions. I would suggest getting a lawyer who KNOWS CF. I think that's the key.
 
B

bethylove

Guest
It took me 3 years and a court date to finally get approved. I had pretty decent (around 70) fev1 when I was applying but so many other factors that it was very frustrating to keep getting denied. It took 7 minutes in front of a judge to be approved. It took a long time but don't give up! You have to jump through all these hoops because thats how the weed out the people are trying to 'beat the system'. I'd like to say having a lawyer helped but my lawyer didn't do too much and really couldn't answer any of my questions. I would suggest getting a lawyer who KNOWS CF. I think that's the key.
 
K

krisjohn53223

New member
I applied on January 11 of this year and still have not heard a decision. I went on a leave of absence from work and have been getting short term disability while I wait this out. Hopefully I will be approved and then will quit my job completely. I also got help from Beth Sufian and supposedly, the process goes a little quicker with her help. I am going on 3 months now.
 
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