My son is 32 y/o with CF. He finally applied for disability in Texas in 2004 and started this 8/2004. He was trying to work full time before this but had difficulties keeping a job because of his CF tuneup times in the hosp, also his diabetes is so ill-controlled. My question is, where does someone like him go to get some financial assistance with living and paying for meds (some of which he cannot afford), eating, etc. since he cannot work. He was married for 10.5 years until Christmas and his wife said that she could not handle his CF anymorre, so he has moved back home with his father and I. We are glad to have him there but we can only provide so much help. I am open to suggestions. I commend all of you who keep up with the business of life and the business of CF. God bless you. Pam
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financial assistance with cf
- Thread starter anonymous
- Start date
spicyone18
New member
I went through the same thing where I was working but now I am no longer able to work and I now claim disablitiy. It is very hard the first couple of months trying to pay for meds. One thing I would suggest is to talk to the social worker down at clinic, they helped me out a lot. Plus I would suggest applying for CSHCN. This program pays for all meds, dr apt. Its a long process the whole disability stuff but hang in there. Also a lot of the pharmacutical companys also offer asstance. Well I hoped this helps a little.
Joblazer86
New member
do cshcn but there is a waiting list for it so try to submit the paperwork asap.
Have you looked into food stamps, Cash assistance, Medicaid-and after 24 months on disability benefits one is elgible for medicare. Food stamps will sometimes disregard the income of those that a "disabled" person is living with if they don't make a lot, or your son really doesn't need to let them know he is living with you, or can state that he pays some sort of rent to you to live there. I know dishonesty isn't really the way to go, but sometimes in our society it's the only way to go.
Also, as the previous poster mentioned, if you need help with RX drugs-a lot of the pharmecutical companies have assistance programs.
Best of luck!
Also, as the previous poster mentioned, if you need help with RX drugs-a lot of the pharmecutical companies have assistance programs.
Best of luck!
RoxyChick2381
New member
I would recommend you apply for ssi . When you get ssi you will get money and foodstamps. You need to go down to the welfare place near you and apply for a medical cupon . That will cover all his medical care and meds to. Hope this helps?Good Luck!
I didn't have to get on a waiting list for CHSHC. "Childrens speical health care". About as fast as I did the paperwork I was accepted. It's for children and adults with CF. Dont let them tell you their's an age limit. Because it is waved for people with CF. I'm from Michigan. I agree with Courtney and call down to your local health care clinic and they will direct you to the best way to handle things. He should be able to get food stamps even with out being on disability because he has no income. Good luck. Eva
There are a few options for how they count income. Most of the time they would count the income of everybody living in the household for SSI, there are a few exceptions where if you have people living in the household-say 5, and one of them is elgible to recieve SSI sometimes they will make that one person their own "household" if the combined income of the other 4 people is just slightly over the limit for SSI. Also, when they figure SSI they take into account not only how much income your family has but how many people are living with you and how much the cost of living is in your area. Those who recieve SSI are also automatically elgible to recieve food stamps. If you receive SSI as your own household you are elgible to recieve a maximum of a little over $100. If you apply as a whole family, they take into consideration all the income minus deductions. If someone is recieving Disability they only have to meet the NET INCOME test, not the gross and net income test. The net income test is all income minus allowable deductions (standard deduction depending on # people in the house, medical deduction for disabled person ove $35 every month) for more specific information visit www.fns.usda.gov/fsp/ and then choose the option "applicants and recipients". If you have specific questions that aren't answered on that site, you can also contact someone and they have always gotten back to me in 2-3 days. You can also find much more indepth information about social security disability and SSI at www.ssa.gov/disability/ They have an extensive Q and A section, general information and a lot of information that I would love to write about but would take forever.
Best of luck with all of this,
Julie
Best of luck with all of this,
Julie
How long did he work before he had to stop? If he worked long enough he can get disablilty and its easier to get and keep than ssi. CSHCN in texas does have a waiting list and from what I have been told its long...but I would still apply for it because once an opening is available for your son he can have it as long as he renews his card and it picks up what medicaid/medicare and other insurances dont pick up...sometimes pick up everything anyway if nothing else will cover it. Its a great back up insurance. Make sure he has applied for disability, and SSI and medicaid...in texas you only get medicaid if you get ssi and I think also disablitly but you can not have it by itself...its silly. If they deny you apeal it....they can not deny him...well ok they can send you a letter saying no...but if you apeal it, sometimes several times, you may even have to get a lawyer (some work for free with this kind of thing or only get paid if you do)...and once that happens that take you on...DO NOT let them say you have to see "their" doctor because usually the doctor thy want to send you to doesnt even know what cf is and that will work against you. Tell them he will see his own doctor. Get his social worker from the cf clinic to help with medical records and letters you should bring to social security offices with you. The social worker will or should know of other assitance programs out there and ways to help you get things.
it may take a while but dont give up hope....Also tell him that it may hurt that his wife left him...but regarding assistance it will help him not being married. Its easier to get assistance as a single person.
Hope I helped some
Amanda
it may take a while but dont give up hope....Also tell him that it may hurt that his wife left him...but regarding assistance it will help him not being married. Its easier to get assistance as a single person.
Hope I helped some
Amanda
To the origional poster, he applied for Disability as you stated in your post, has he heard anything back from them yet? If not, be prepared that they might deny him. My hubbie applied in October 2002! and got denied. We appealed that denial and got denied again, but I wasn't going to let them win, plus I have heard throught the grape vine that it's their way to weed out as many people as they can. They hope that people will just get tired and give up-DONT and DONT let him!! we finally got a hearing December 2004-yes, more than 24 months later. But you know what, it all paid off because they ruled in our favor and that's 26 months of back pay we get. Make sure if you get to the hearing point that you ask for not only a vocational expert but also a MEDICAL expert who has knowledge of CF. There are certain social security rules that will render him immediately avilable for disability. You can look them up for sure on the social security website at (copy this onto your web browser) http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm The choose respiratory for the CF listing. Also, if he has any digestive issues, it might behoove you to look there as well. Since CF can affect so many different systems of the body, they have to consider all of that when deciding his case. Basically if he has "3.04 Cystic fibrosis. With:
A. An FEV1 equal to or less than the appropriate value specified in table IV corresponding to the individual's height without shoes. (In cases of marked spinal deformity, see. 3.00E.);
or
B. Episodes of bronchitis or pneumonia or hemoptysis (more than bloodstreaked sputum) or respiratory failure (documented according to 3.00C, requiring physician intervention, occurring at least once every 2 months or at least six times a year. Each inpatient hospitalization for longer than 24 hours for treatment counts as two episodes, and an evaluation period of at least 12 consecutive months must be used to determine the frequency of episodes;
or
C. Persistent pulmonary infection accompanied by superimposed, recurrent, symptomatic episodes of increased bacterial infection occurring at least once every 6 months and requiring intravenous or nebulization antimicrobial therapy."
He should qualify without a dobut, but you must make it known to those you are filing the disability with that he meets or equals one of the listings above. For my husband, he didn't meet any of the listings, he came short of meeting every single one of them by just a bit, but because he had all 3 ailments affecting him plus some digestive issues, they ruled that the severity of all three of them combined meant he equaled all three of the listings.
If you end up needing a good lawyer, contact Beth Sufian (just type her name in google). She is a woman with CF who advocates CF disability cases. We did not have her as our lawyer (wish I did though) but she did talk to me and give me some advice because my lawyer was clueless about CF. I honestly think some of the things she told us helped us win the case.
Best of luck with everything,
Julie (wife to mark 24w/CF)
A. An FEV1 equal to or less than the appropriate value specified in table IV corresponding to the individual's height without shoes. (In cases of marked spinal deformity, see. 3.00E.);
or
B. Episodes of bronchitis or pneumonia or hemoptysis (more than bloodstreaked sputum) or respiratory failure (documented according to 3.00C, requiring physician intervention, occurring at least once every 2 months or at least six times a year. Each inpatient hospitalization for longer than 24 hours for treatment counts as two episodes, and an evaluation period of at least 12 consecutive months must be used to determine the frequency of episodes;
or
C. Persistent pulmonary infection accompanied by superimposed, recurrent, symptomatic episodes of increased bacterial infection occurring at least once every 6 months and requiring intravenous or nebulization antimicrobial therapy."
He should qualify without a dobut, but you must make it known to those you are filing the disability with that he meets or equals one of the listings above. For my husband, he didn't meet any of the listings, he came short of meeting every single one of them by just a bit, but because he had all 3 ailments affecting him plus some digestive issues, they ruled that the severity of all three of them combined meant he equaled all three of the listings.
If you end up needing a good lawyer, contact Beth Sufian (just type her name in google). She is a woman with CF who advocates CF disability cases. We did not have her as our lawyer (wish I did though) but she did talk to me and give me some advice because my lawyer was clueless about CF. I honestly think some of the things she told us helped us win the case.
Best of luck with everything,
Julie (wife to mark 24w/CF)
Emily65Roses
New member
Just to back up what Julie said... They do try to weed everyone out. I started applying in September of 02, and got denied until Dececmber of 04. So not only do I actually get my benefits now, but I also get 2 years of back payments.
spicyone18
New member
To the original poster,
Like I have stated before I have gone through the same thing with disability and what not. If you go to the CF clinic in dallas the social worker there knows an attorney that has CF, so she obviously knows how to work around the system if you are denied. If you dont go to the clinic in dallas I may be able to find her number for you and post it if you would like. It can be a long process but in the end its worth it.
Like I have stated before I have gone through the same thing with disability and what not. If you go to the CF clinic in dallas the social worker there knows an attorney that has CF, so she obviously knows how to work around the system if you are denied. If you dont go to the clinic in dallas I may be able to find her number for you and post it if you would like. It can be a long process but in the end its worth it.
Courtney,
Yes Jeff has applied for disability and has been receiving it since August 2004. However, the medical part of the disability evidently does not go in to effect until 24 months after the start of disability. Is there anything else that he should apply for with regards to SSI, Medicaid, Medicare. I am not sure how all of those things play with regards to the disability. Will he have Medicaid/Medicare after his 24 month waiting period? I am sorry, I am pretty ignorant with regards to all of this legal/state stuff. I looked online for Medicaid and Medicare but reading it was one thing and understanding was another. I would appreciate the name of the CF attorney guy in Dallas just in case, if you don't mind.
And thank you so much for your help.
Pam, mother of a 32 y/r CFr.
Yes Jeff has applied for disability and has been receiving it since August 2004. However, the medical part of the disability evidently does not go in to effect until 24 months after the start of disability. Is there anything else that he should apply for with regards to SSI, Medicaid, Medicare. I am not sure how all of those things play with regards to the disability. Will he have Medicaid/Medicare after his 24 month waiting period? I am sorry, I am pretty ignorant with regards to all of this legal/state stuff. I looked online for Medicaid and Medicare but reading it was one thing and understanding was another. I would appreciate the name of the CF attorney guy in Dallas just in case, if you don't mind.
And thank you so much for your help.
Pam, mother of a 32 y/r CFr.
He can and should apply for medicAID now, medicare will be avilable to him without question after 24 months of being on disability. If he didn't apply for SSI in conjunction with his SSD, he still should even though he might not get any benefits because SSI is soley off of income, and depending on what his SSD benefit is, it might put him over income.
He should apply for food stamps, they are a help. It looks just like a credit card (no more somewhat embarassing paper coupons) and he will have a pin number. It is accepted at all major grocery food chains.
I believe the lawyer the previous poster is referring to is Beth Sufian, type her name into google and it will give her phone number and email address. I contacted her via email and she was very helpful even though she wasn't our lawyer.
Julie
He should apply for food stamps, they are a help. It looks just like a credit card (no more somewhat embarassing paper coupons) and he will have a pin number. It is accepted at all major grocery food chains.
I believe the lawyer the previous poster is referring to is Beth Sufian, type her name into google and it will give her phone number and email address. I contacted her via email and she was very helpful even though she wasn't our lawyer.
Julie