Social Security/disability

[julie]

The requirements for children and adults are VERY different. How old is your child?

I'm happy to help point you in the right direction and give you some "tools" that have assisted others with the process, a number of others on here have utilized them, and I learned most of my info from Beth Sufian. She's a wonderful woman. But if I can save someone else the $$$ of going with a lawyer, I will.

The downside is of course the extensive wait time for approval. And most often, you are denied a MINIMUM of two times. The key there is to APPEAL! Whatever you do, DO NOT re-file a new claim. Appeal appeal appeal until you are blue in the face!

Le me know if I can help, my email is division902@verizon.net

 

[cf4life]

We don't really know much about the situation here, but I wonder why you want to get your child approved for disability? Everyone's situation is different, but as long as your child is managing her CF I would suggest spending your time on educating her to make a good college/career decision versus fighting for social security. With a good career your child with have access to good health care and also empoyer disability benefits, not to mention racking up working years for much better SSDI down the road.

 

[cf4life]

We don't really know much about the situation here, but I wonder why you want to get your child approved for disability? Everyone's situation is different, but as long as your child is managing her CF I would suggest spending your time on educating her to make a good college/career decision versus fighting for social security. With a good career your child with have access to good health care and also empoyer disability benefits, not to mention racking up working years for much better SSDI down the road.

 

[cf4life]

We don't really know much about the situation here, but I wonder why you want to get your child approved for disability? Everyone's situation is different, but as long as your child is managing her CF I would suggest spending your time on educating her to make a good college/career decision versus fighting for social security. With a good career your child with have access to good health care and also empoyer disability benefits, not to mention racking up working years for much better SSDI down the road.

 

[ladybug]

I am not on disability or SSDI. I was denied over and over with each appeal and finally denied after a trial. They said I had never tried to work full time (I was around 19 and living at home, going to college and working about 20 hours a week). They also said that even though my FEV1 was around 53%, I could still hold a desk job. They didn't find my medical records (with hospitalizations every year, 3 hours of treatments a day, needed naps, PA diagnosis, and low FEV1) "good enough" I guess. After I lost in court, I stopped trying. At this point, my FEV1 is about 5% HIGHER baseline than it was back then and I still have never held a full time job cause I KNOW I get sick when I even work 20 hours a week or go to school. So, here I sit, unemployed due to CF and unable to hold a job and stay healthy and unable to contribute to our income. I don't mean to whine, and know many CFers CAN and do work and take care of themselves at the same time, but for me, I know my body and my habits and know I am sick more often if I work and go to grad school. The whole thing left a terrible taste in my mouth. Its even harder to stomach when I see how others on the site have gotten it so easily (I'm GLAD they got it though, don't get me wrong).

Anyway, good luck to you! I hope you get it without a fight. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

I am not on disability or SSDI. I was denied over and over with each appeal and finally denied after a trial. They said I had never tried to work full time (I was around 19 and living at home, going to college and working about 20 hours a week). They also said that even though my FEV1 was around 53%, I could still hold a desk job. They didn't find my medical records (with hospitalizations every year, 3 hours of treatments a day, needed naps, PA diagnosis, and low FEV1) "good enough" I guess. After I lost in court, I stopped trying. At this point, my FEV1 is about 5% HIGHER baseline than it was back then and I still have never held a full time job cause I KNOW I get sick when I even work 20 hours a week or go to school. So, here I sit, unemployed due to CF and unable to hold a job and stay healthy and unable to contribute to our income. I don't mean to whine, and know many CFers CAN and do work and take care of themselves at the same time, but for me, I know my body and my habits and know I am sick more often if I work and go to grad school. The whole thing left a terrible taste in my mouth. Its even harder to stomach when I see how others on the site have gotten it so easily (I'm GLAD they got it though, don't get me wrong).

Anyway, good luck to you! I hope you get it without a fight. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

I am not on disability or SSDI. I was denied over and over with each appeal and finally denied after a trial. They said I had never tried to work full time (I was around 19 and living at home, going to college and working about 20 hours a week). They also said that even though my FEV1 was around 53%, I could still hold a desk job. They didn't find my medical records (with hospitalizations every year, 3 hours of treatments a day, needed naps, PA diagnosis, and low FEV1) "good enough" I guess. After I lost in court, I stopped trying. At this point, my FEV1 is about 5% HIGHER baseline than it was back then and I still have never held a full time job cause I KNOW I get sick when I even work 20 hours a week or go to school. So, here I sit, unemployed due to CF and unable to hold a job and stay healthy and unable to contribute to our income. I don't mean to whine, and know many CFers CAN and do work and take care of themselves at the same time, but for me, I know my body and my habits and know I am sick more often if I work and go to grad school. The whole thing left a terrible taste in my mouth. Its even harder to stomach when I see how others on the site have gotten it so easily (I'm GLAD they got it though, don't get me wrong).

Anyway, good luck to you! I hope you get it without a fight. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[amber682]

It is really difficult to get it for a child. I tried for Vincent, got denied twice. I think even with a lawyer we would have lost, because even though we have to spend time on treatments, and do a lot of meds, Vincent isn't sick enough for them. (I'll just count my blessings that he is too healthy to get SSI.)

I agree that Beth Sufian is the best you can get. She's very nice. You can send her the records and she'll look over them and see if she thinks you could win.
Julie was a lot of help for me too (thanks Julie!).

They will almost definately deny you the first time. Don't reapply, just appeal, that way if you do ever win it, you'll get the back pay. With SSI you have to make less than a certain amount to be eligible, I'm not sure about SSDI though.

If I was going to do it all over again, I'd save myself the hassle and just hire a lawyer from the beginning.

 

[amber682]

It is really difficult to get it for a child. I tried for Vincent, got denied twice. I think even with a lawyer we would have lost, because even though we have to spend time on treatments, and do a lot of meds, Vincent isn't sick enough for them. (I'll just count my blessings that he is too healthy to get SSI.)

I agree that Beth Sufian is the best you can get. She's very nice. You can send her the records and she'll look over them and see if she thinks you could win.
Julie was a lot of help for me too (thanks Julie!).

They will almost definately deny you the first time. Don't reapply, just appeal, that way if you do ever win it, you'll get the back pay. With SSI you have to make less than a certain amount to be eligible, I'm not sure about SSDI though.

If I was going to do it all over again, I'd save myself the hassle and just hire a lawyer from the beginning.

 

[amber682]

It is really difficult to get it for a child. I tried for Vincent, got denied twice. I think even with a lawyer we would have lost, because even though we have to spend time on treatments, and do a lot of meds, Vincent isn't sick enough for them. (I'll just count my blessings that he is too healthy to get SSI.)

I agree that Beth Sufian is the best you can get. She's very nice. You can send her the records and she'll look over them and see if she thinks you could win.
Julie was a lot of help for me too (thanks Julie!).

They will almost definately deny you the first time. Don't reapply, just appeal, that way if you do ever win it, you'll get the back pay. With SSI you have to make less than a certain amount to be eligible, I'm not sure about SSDI though.

If I was going to do it all over again, I'd save myself the hassle and just hire a lawyer from the beginning.

 

[thefrogprincess]

My parents and now my brother had a terrible time getting it when we were kids, and now my brother as an adult. My mom never hired a lawyer, but it took her about 7 years to get my brothers and 9 or 10 years to get mine. Then after about 5 years they decided we were too healthy to recieve it anymore. Stupid. My brother did hire a lawyer and it still took him 6 years or so. Its definately worth getting a lawyer who knows their way around the system.

 

[thefrogprincess]

My parents and now my brother had a terrible time getting it when we were kids, and now my brother as an adult. My mom never hired a lawyer, but it took her about 7 years to get my brothers and 9 or 10 years to get mine. Then after about 5 years they decided we were too healthy to recieve it anymore. Stupid. My brother did hire a lawyer and it still took him 6 years or so. Its definately worth getting a lawyer who knows their way around the system.

 

[thefrogprincess]

My parents and now my brother had a terrible time getting it when we were kids, and now my brother as an adult. My mom never hired a lawyer, but it took her about 7 years to get my brothers and 9 or 10 years to get mine. Then after about 5 years they decided we were too healthy to recieve it anymore. Stupid. My brother did hire a lawyer and it still took him 6 years or so. Its definately worth getting a lawyer who knows their way around the system.

 

[Samsmom]

In answer to cf4life, My daughter had other issue beside cf. She has mental health issues that impair her ability to function socially and her education is a struggle. She tries very hard and the school has worked very hard to help. My hopes are that she will be able to obtain a college education, but the realistic view is that this child will probable never be able to take care of herself. Her councelor and psychiatrist have begun preparing us for the fact that we may always have to help her with the normal day to day grind of life. Getting the cf diagnosis on top of the other just compounds her problem. Now she is on 10-12 meds a day plus the acapella and sometimes the neb. I don't think she will ever be able to manage her health care on her own. I am afraid that if she is not on disability that when she turns 18 our insurance coverage on her will stop (or age 21 if a full time student) and she will be left with no coverage. That is my main reason for wanting it. I will care for her as long as she needs me, but if the insurance coverage is lost, I can't cover the bills.

Another side note, we applied several years ago based on mental health before we got the cf diagnosis and were told that we made too much money for her to qualify. We are re-applying now because we have the new diagnosis to add and we have had a change in income since I no longer work. We did not appeal at the time because our income was too high and we were told that appeal would be a waste of our time unless the income was different because her mental health conditions were considered disabeling.

 

[Samsmom]

In answer to cf4life, My daughter had other issue beside cf. She has mental health issues that impair her ability to function socially and her education is a struggle. She tries very hard and the school has worked very hard to help. My hopes are that she will be able to obtain a college education, but the realistic view is that this child will probable never be able to take care of herself. Her councelor and psychiatrist have begun preparing us for the fact that we may always have to help her with the normal day to day grind of life. Getting the cf diagnosis on top of the other just compounds her problem. Now she is on 10-12 meds a day plus the acapella and sometimes the neb. I don't think she will ever be able to manage her health care on her own. I am afraid that if she is not on disability that when she turns 18 our insurance coverage on her will stop (or age 21 if a full time student) and she will be left with no coverage. That is my main reason for wanting it. I will care for her as long as she needs me, but if the insurance coverage is lost, I can't cover the bills.

Another side note, we applied several years ago based on mental health before we got the cf diagnosis and were told that we made too much money for her to qualify. We are re-applying now because we have the new diagnosis to add and we have had a change in income since I no longer work. We did not appeal at the time because our income was too high and we were told that appeal would be a waste of our time unless the income was different because her mental health conditions were considered disabeling.

 

[Samsmom]

In answer to cf4life, My daughter had other issue beside cf. She has mental health issues that impair her ability to function socially and her education is a struggle. She tries very hard and the school has worked very hard to help. My hopes are that she will be able to obtain a college education, but the realistic view is that this child will probable never be able to take care of herself. Her councelor and psychiatrist have begun preparing us for the fact that we may always have to help her with the normal day to day grind of life. Getting the cf diagnosis on top of the other just compounds her problem. Now she is on 10-12 meds a day plus the acapella and sometimes the neb. I don't think she will ever be able to manage her health care on her own. I am afraid that if she is not on disability that when she turns 18 our insurance coverage on her will stop (or age 21 if a full time student) and she will be left with no coverage. That is my main reason for wanting it. I will care for her as long as she needs me, but if the insurance coverage is lost, I can't cover the bills.

Another side note, we applied several years ago based on mental health before we got the cf diagnosis and were told that we made too much money for her to qualify. We are re-applying now because we have the new diagnosis to add and we have had a change in income since I no longer work. We did not appeal at the time because our income was too high and we were told that appeal would be a waste of our time unless the income was different because her mental health conditions were considered disabeling.

 

[julie]

Jean,

ARe either of your parents or your husbands parents currently on Social security retirement? If you make too much for SSI, then you can always apply for your child to recieve benefits on behalf of someone in the family (must be parent or grandparent) who is CURRENTLY recieving Social security retirement.

I'm not sure how it would affect THEIR retirment though. I know there is a maximum family cap. that can be paid in one persons name. But I'm not sure if it works that way if you are recieving benefits this way, or if it would reduce their monthly benefit.... I've tried to look into it but since I'm not in that position , I havne't recieved much chairfying information from Social Security.

 

[julie]

Jean,

ARe either of your parents or your husbands parents currently on Social security retirement? If you make too much for SSI, then you can always apply for your child to recieve benefits on behalf of someone in the family (must be parent or grandparent) who is CURRENTLY recieving Social security retirement.

I'm not sure how it would affect THEIR retirment though. I know there is a maximum family cap. that can be paid in one persons name. But I'm not sure if it works that way if you are recieving benefits this way, or if it would reduce their monthly benefit.... I've tried to look into it but since I'm not in that position , I havne't recieved much chairfying information from Social Security.

 

[julie]

Jean,

ARe either of your parents or your husbands parents currently on Social security retirement? If you make too much for SSI, then you can always apply for your child to recieve benefits on behalf of someone in the family (must be parent or grandparent) who is CURRENTLY recieving Social security retirement.

I'm not sure how it would affect THEIR retirment though. I know there is a maximum family cap. that can be paid in one persons name. But I'm not sure if it works that way if you are recieving benefits this way, or if it would reduce their monthly benefit.... I've tried to look into it but since I'm not in that position , I havne't recieved much chairfying information from Social Security.

 

[Samsmom]

Thanks Julie for the info, but that unfortunately won't work. No one in our faimilies is on Social security retirement. Hopefully the change in income will be enough to get her qualified. All we can do is keep trying!!