I WAS WONDERING HOW YOU CAN GET DISABILITY WHEN YOU HAVE CF. I AM 27 AND A MOTHER OF 2. MY CF ISN'T REALLY BAD, BUT RIGHT NOW I AM NOT WORKING BECAUSE WHEN MY CHILDREN ARE IN DAYCARE THEY COME HOME WITH ALL KINDS OF THINGS AND THEN I GET SICK. I WOULD LOVE TO STAY HOME WITH THEM FOREVER BECAUSE I ALSO WORRY ABOUT NOT BEING WITH THEM SOMEDAY! I'M NOT SURE HOW TO QUALIFY FOR SSI THOUGH, OR IF YOU HAVE TO BE VERY ILL. I HAVE CHRONIC SINUS PROBLEMS AND DIABETES. THOSE ARE THE MAIN PROBLEMS WITH MY CF. IF ANY OF YOU HAVE ANY COMMENTS I WOULD LOVE TO HERE THEM! THANKS!
CF AND SSI DISABILITY
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I WAS WONDERING HOW YOU CAN GET DISABILITY WHEN YOU HAVE CF. I AM 27 AND A MOTHER OF 2. MY CF ISN'T REALLY BAD, BUT RIGHT NOW I AM NOT WORKING BECAUSE WHEN MY CHILDREN ARE IN DAYCARE THEY COME HOME WITH ALL KINDS OF THINGS AND THEN I GET SICK. I WOULD LOVE TO STAY HOME WITH THEM FOREVER BECAUSE I ALSO WORRY ABOUT NOT BEING WITH THEM SOMEDAY! I'M NOT SURE HOW TO QUALIFY FOR SSI THOUGH, OR IF YOU HAVE TO BE VERY ILL. I HAVE CHRONIC SINUS PROBLEMS AND DIABETES. THOSE ARE THE MAIN PROBLEMS WITH MY CF. IF ANY OF YOU HAVE ANY COMMENTS I WOULD LOVE TO HERE THEM! THANKS!
don't need to be really sick to qualify...just the fact that u have cf is enough. I am not sure, but the household income needs to be under 25000 year and the ssi may pay u 500 month or less, usualy less. My 6 months old baby has cf, and daycare to him now is not a good thing...so I quitted my job to stay with him at home. He has disability...but every month we get some diferent amount...last one was 148 dollars...but I guess this month will be around 350...u should aply for disability if u have the income under 25000...good luckvalmum of torin w/ cf
don't need to be really sick to qualify...just the fact that u have cf is enough. I am not sure, but the household income needs to be under 25000 year and the ssi may pay u 500 month or less, usualy less. My 6 months old baby has cf, and daycare to him now is not a good thing...so I quitted my job to stay with him at home. He has disability...but every month we get some diferent amount...last one was 148 dollars...but I guess this month will be around 350...u should aply for disability if u have the income under 25000...good luckvalmum of torin w/ cf
In the US, I don't think simply having CF is enough to qualify you for disability. I believe there is additional criteria that you must meet in order to be classified as 'disabled'. Just as an example (by no means am I insinuating that the criteria is the same) if you've applied for a handicapped license plate in the state where I live, you must meet a certain threshold for lung function- or should I say lack there of. In my state for example, one of the qualifications is you must have an FEV of less than 1.0 liters of air, and of course the requisite statement from your doctor stating your disability.Keep in mind that not all states are the same. I believe that even though Social Security is a federal program, it's administered at the state level. I have limited experience with this, as I qualified for ssdi (disability) my first time around... of course I'm also a lung transplant candidate.There are two kinds of social security that nonretirement age CF'ers can qualify for:SS supplemental income or SSSI which is for those who've never been employed, and there's SS disabililty income ,SSDI, for those who've been employed and paid into the system. The amount you get regarding the SSDI depends on how much you've paid in, while SSSI remains roughly the same for all who qualify. Hope this helps some, and good luck getting qualified 
P.S. Once you apply, they research your medical records. Also bear in mind that many who qualified were turned down initially, but were approved during the appeals process. Then again, some have had to hire lawyers to fight for them...
P.S. Once you apply, they research your medical records. Also bear in mind that many who qualified were turned down initially, but were approved during the appeals process. Then again, some have had to hire lawyers to fight for them...In the US, I don't think simply having CF is enough to qualify you for disability. I believe there is additional criteria that you must meet in order to be classified as 'disabled'. Just as an example (by no means am I insinuating that the criteria is the same) if you've applied for a handicapped license plate in the state where I live, you must meet a certain threshold for lung function- or should I say lack there of. In my state for example, one of the qualifications is you must have an FEV of less than 1.0 liters of air, and of course the requisite statement from your doctor stating your disability.Keep in mind that not all states are the same. I believe that even though Social Security is a federal program, it's administered at the state level. I have limited experience with this, as I qualified for ssdi (disability) my first time around... of course I'm also a lung transplant candidate.There are two kinds of social security that nonretirement age CF'ers can qualify for:SS supplemental income or SSSI which is for those who've never been employed, and there's SS disabililty income ,SSDI, for those who've been employed and paid into the system. The amount you get regarding the SSDI depends on how much you've paid in, while SSSI remains roughly the same for all who qualify. Hope this helps some, and good luck getting qualified P.S. Once you apply, they research your medical records. Also bear in mind that many who qualified were turned down initially, but were approved during the appeals process. Then again, some have had to hire lawyers to fight for them...
P.S. Once you apply, they research your medical records. Also bear in mind that many who qualified were turned down initially, but were approved during the appeals process. Then again, some have had to hire lawyers to fight for them...It depends almost entirely in what state you live in.....some states are much more lenient on SSI requirements. I however, live in Illinois and is almost entirely impossible to get on disability because I am able to work...which at this point...I'm glad. However, I know the requirements are very strict here....and you have to have a letter from your doctor when you are no longer able to work....you have to be what they call "TOTALLY" disabled here to get ANY kind of help! I hope you are in a better state than I am...Good Luck and Take Care!Dea-30yr old female with CF and CFRD-married with a 5 yr old daughter
It depends almost entirely in what state you live in.....some states are much more lenient on SSI requirements. I however, live in Illinois and is almost entirely impossible to get on disability because I am able to work...which at this point...I'm glad. However, I know the requirements are very strict here....and you have to have a letter from your doctor when you are no longer able to work....you have to be what they call "TOTALLY" disabled here to get ANY kind of help! I hope you are in a better state than I am...Good Luck and Take Care!Dea-30yr old female with CF and CFRD-married with a 5 yr old daughter
My daughter was just accepted for SSI. When filling out the papers, always think of the worst days. Don't be afraid to say how cf affects every aspect of your childs life. Sleeping, contact with others, eating, growing, coughing, meds, everything!. Also send as many reports as you can get from the Doctors, RT's, Dieticians, radiology, labs, everything. Write down as much detail as you can. Shen I filled out my daughters forms I sent along 10 various reports with it. The less the social security people have to do the better. It also helps to appy just after a hospital stay. She was suprisingly accepted in two weeks on a temporary basis, and we just received the news that she has been accepted permanently, within three months of applying. Her medical review will be in three years. If you need any help I would love to help, just e-mail me. Michelle @ dare2write101 yahoo.com
My daughter was just accepted for SSI. When filling out the papers, always think of the worst days. Don't be afraid to say how cf affects every aspect of your childs life. Sleeping, contact with others, eating, growing, coughing, meds, everything!. Also send as many reports as you can get from the Doctors, RT's, Dieticians, radiology, labs, everything. Write down as much detail as you can. Shen I filled out my daughters forms I sent along 10 various reports with it. The less the social security people have to do the better. It also helps to appy just after a hospital stay. She was suprisingly accepted in two weeks on a temporary basis, and we just received the news that she has been accepted permanently, within three months of applying. Her medical review will be in three years. If you need any help I would love to help, just e-mail me. Michelle @ dare2write101 yahoo.com
steph65roses
New member
Hello! My name is Stephanie. I am 27 and have CF and CFRD. I work for the Disability Resource Center here in CT. We specialize in all kinds of disabilities (physical, mental, learning disabilities, etc.) According to the Americans with Disabilities Act (ADA), a disability defined as...Disability. - The term ``disability'' means, with respect to anindividual- (A) a physical or mental impairment that substantially limits oneor more of the major life activities of such individual; (B) a record of such an impairment; or (C) being regarded as having such an impairment.This means that CF and diabetes are considered disabilities. Persons with CF and/or CFRD are covered under the ADA. This does not necessarily mean one would be applicable for SSI or SSDI, but there are laws and such pertaining to persons with disabilities.Stephaniehttp://www.steph65roses.com
steph65roses
New member
Hello! My name is Stephanie. I am 27 and have CF and CFRD. I work for the Disability Resource Center here in CT. We specialize in all kinds of disabilities (physical, mental, learning disabilities, etc.) According to the Americans with Disabilities Act (ADA), a disability defined as...Disability. - The term ``disability'' means, with respect to anindividual- (A) a physical or mental impairment that substantially limits oneor more of the major life activities of such individual; (B) a record of such an impairment; or (C) being regarded as having such an impairment.This means that CF and diabetes are considered disabilities. Persons with CF and/or CFRD are covered under the ADA. This does not necessarily mean one would be applicable for SSI or SSDI, but there are laws and such pertaining to persons with disabilities.Stephaniehttp://www.steph65roses.com
I became the sickest in my life in 1/2000. I went to work that morning (I worked at our local hospital), ended up in the emergency room & didnt return home from the hospital (was transferred to my CF doctor 3 hours away) for 1 month & never returned to work. My PFT & weight were life threatening. I applied for Social Security Disability (this is one based on your employment or if a minor under the parents & there must be enough work credits to be eligible). I was denied. I hired a local disability lawyer who approached the appeal in a manner I wasnt happy with even tho he gauranteed I would win. I fired him & hired Beth Sufian (she has CF & specializes in CF cases) who told me that Social Security Administration (SSA) has guidelines specifically for CF. 3 criterias for CF regarding PFT levels, hemoptysis & use of an aerosol antibiotic. Unfortunately you must meet them for certain amount of time & thankfully my health improved, but it screwed up my disability case. We ended up winning, but not by using the actual criteria under SSA for CF. Basically due to the area I live in (small community with limited employment), I would not be able to get another job within my pay range to accomodate my health needs & anything else would be threatening to my life. My case is based on the fact that it takes sooo much time just to maintain my health between treatments, meals & rest that employment would compromise my health. Social Security Income is a bit different. Although it is based on your medical disability, it also includes your income as part of the eligibility process. For New York State I know there are a lot of loop holes, but since each state is different its hard to say what can be doneWhenever someone is approved for disability, there are certain requirements that must be met (number of visits to provider, meds, etc) as well as reviews on the part of Social Security. The reviews times vary from case to case. I believe the soonest is 6 months & longest is 6 years. My health since being home is the best it has ever been. Most of that is the ability to rest when I need to. Although I would love to work again, my husband is so worried that I would push myself to hard. I am just looking for 1-2 nights a week at the most. We just returned from our first family vacation ever. We went with friends to Florida. If I was working, that never could have happened. My daughter (5 year old princess she is) enjoys having her Mom home. Although she wonders what I will do all day when she starts Kindergarden...me too?! Some people can do it all, but that doesnt mean they should. Many people without CF cant do it all. I had a hard time mentally accepting this major change in my life until my doctor (a full time doctor & mother of 4) pointed out that I just changed my priorities. Sorry for rambling, but I wanted to give my story! <img src="i/expressions/face-icon-small-wink.gif" border="0">
I became the sickest in my life in 1/2000. I went to work that morning (I worked at our local hospital), ended up in the emergency room & didnt return home from the hospital (was transferred to my CF doctor 3 hours away) for 1 month & never returned to work. My PFT & weight were life threatening. I applied for Social Security Disability (this is one based on your employment or if a minor under the parents & there must be enough work credits to be eligible). I was denied. I hired a local disability lawyer who approached the appeal in a manner I wasnt happy with even tho he gauranteed I would win. I fired him & hired Beth Sufian (she has CF & specializes in CF cases) who told me that Social Security Administration (SSA) has guidelines specifically for CF. 3 criterias for CF regarding PFT levels, hemoptysis & use of an aerosol antibiotic. Unfortunately you must meet them for certain amount of time & thankfully my health improved, but it screwed up my disability case. We ended up winning, but not by using the actual criteria under SSA for CF. Basically due to the area I live in (small community with limited employment), I would not be able to get another job within my pay range to accomodate my health needs & anything else would be threatening to my life. My case is based on the fact that it takes sooo much time just to maintain my health between treatments, meals & rest that employment would compromise my health. Social Security Income is a bit different. Although it is based on your medical disability, it also includes your income as part of the eligibility process. For New York State I know there are a lot of loop holes, but since each state is different its hard to say what can be doneWhenever someone is approved for disability, there are certain requirements that must be met (number of visits to provider, meds, etc) as well as reviews on the part of Social Security. The reviews times vary from case to case. I believe the soonest is 6 months & longest is 6 years. My health since being home is the best it has ever been. Most of that is the ability to rest when I need to. Although I would love to work again, my husband is so worried that I would push myself to hard. I am just looking for 1-2 nights a week at the most. We just returned from our first family vacation ever. We went with friends to Florida. If I was working, that never could have happened. My daughter (5 year old princess she is) enjoys having her Mom home. Although she wonders what I will do all day when she starts Kindergarden...me too?! Some people can do it all, but that doesnt mean they should. Many people without CF cant do it all. I had a hard time mentally accepting this major change in my life until my doctor (a full time doctor & mother of 4) pointed out that I just changed my priorities. Sorry for rambling, but I wanted to give my story! <img src="i/expressions/face-icon-small-wink.gif" border="0">
Hi, I wanted to chime in here. There are 2 kinds of social security people can apply for if they have CF. I have only had to deal with one since it is my daughter not myself that has CF. SSI is a FEDERAl program and "should not" vary from state to state, but it seems as though it does. When you fill out your paper work include words like 'chronic" and "life threatening" CF is chronic and life threatening and I honestly believe that the people who read this paperwork have no idea what CF is, so you have to tell them in no uncertain terms that there is no cure for CF. SSI depends on not only income but also how many people are in the household. So If you have 5 people in your household you can earn more than if you only have 3.Our SSI request was denied three times before it finally went before a judge who asked "why are we even discussing this? This child has CF and should get SSI." We were supposed to have a hearing with us present and everything but he made the judgement from the paperwork, and we never even had to go in. They then had to pay us a back payment to pay all the money that should have been given to her while we were fighting for it. There is no reason you can't apply. They have to at least take the application and consider it. when they reject it the first time keep requesting a hearing or reconsideration, It should pay off in the end.Good Luck!Andrea
Hi, I wanted to chime in here. There are 2 kinds of social security people can apply for if they have CF. I have only had to deal with one since it is my daughter not myself that has CF. SSI is a FEDERAl program and "should not" vary from state to state, but it seems as though it does. When you fill out your paper work include words like 'chronic" and "life threatening" CF is chronic and life threatening and I honestly believe that the people who read this paperwork have no idea what CF is, so you have to tell them in no uncertain terms that there is no cure for CF. SSI depends on not only income but also how many people are in the household. So If you have 5 people in your household you can earn more than if you only have 3.Our SSI request was denied three times before it finally went before a judge who asked "why are we even discussing this? This child has CF and should get SSI." We were supposed to have a hearing with us present and everything but he made the judgement from the paperwork, and we never even had to go in. They then had to pay us a back payment to pay all the money that should have been given to her while we were fighting for it. There is no reason you can't apply. They have to at least take the application and consider it. when they reject it the first time keep requesting a hearing or reconsideration, It should pay off in the end.Good Luck!Andrea
Just wanted to add a little bit of information the Social security department gave me. I was told when I applied for my daughter that she would qualify simply because of her CF, but they would more than likely turn her down...in hopes I would give up. The gentleman there said if I was turned down to re-apply untill aproved. We luckly didn't have to do all the run around and paperwork game, she was approved the first time. But like someone else mentioned it is based on income and you need to qualify by at least $1 to remain on ss. Not only did she recieve anywhere from $1-500 per mo but full medical also. Best of luck. One other thing, we applied just after she was diagnosed, at that time she had very little symptoms and/or problems. Her main thing was weight gain and the loose stools, no resp involvement.
You can get the guidelines for CF patients to get SSI from the Social Security Administration. If you punch social security administration in search the web you can get to their site. It will probably be denied and you will have to get a lawyer, they will take something like 5% of the final award once you get it, plan on about 2 or so years to get it. You may want to start the process now, and plan on a lot of paperwork. It is a pain, but worth the medical benefits once you get it.