Diagnosed as terminal, but unable to receive Social Security

My father was diagnosed as being terminal (renal cell) close to a year ago. He has been struggling with the Social Security Administration regarding his disability compensation. He is able to work most times as of now, however it is very difficult when he has his "off" days, nad he tires quite easily. He is actively trying to have the law regarding the terminally ill either changed or amended. We are trying to gather some information from other people who may have had a similar experience. He now considers this his purpose in life. He knows it may be too late to help himself, but he is sincere in his effort to help those who follow. Please, if you have any information that may be of help to him, I would truly appreciate it as he is the most wonderful man I know and I will continue to pursue this for him when he is no longer with us. Thank you.

Hi! I do not know if I can help, but I will share. My husband has multiple myeloma and amyloidosis. Both are not curable. I went on a support site for his amyloidosis and they gave advice to apply for disability. Well, I did and got him an appt. and the doctors were aware and ready to complete the forms. Everybody and their uncle said how great that I applied and not to get my hopes up! Well to make it short he got it first time out and within three and half months. The only thing they changed was the time his disability started. The date for us was hard to come up with anyways with the diseases he had. Check the support sites for your dad's illness.They can give you some guidance on how others fare. What are the standards that the government are looking at. They may see it as a partial disability now. How the doctors say it and explain it have alot to do with it too. My husband is now 57 yrs old and retired early from a state job. He was retired approx. two years when we got the first diagonosis. My husband has good and bad days too. I know patients who have one or both of his diseases and try to work. It helps if the primary doctor and staff are very familiar with doing disability forms too. Let me know if there is something else I can help with. Oh, I did put it in prayer too. If one is not going to get well, I figured how could they refuse? Colleen

I can't offer a solution but can offer my support as I am in the same predicament going into the third round of the appeal process. Terminal brain cancer isn't enough of a disability for SSI. I would gladly give it to anyone who will give me a body I can work with without needing up to 17 different medications daily. I'm not sure what I can do but feel free to contact me if you have any ideas.

It's not right that sick people have to fight there way through this system. My husband has lung cancer and is not working. We filed railroad retirment as he was a former railroad worker. We were approved within a short period of time. I think what is happening with your Dad is that SSDI feels that a person has to be "totally disabled from ANY occupation". Therefore, if he is working on and off they don't feel he is "totally disabled" in there eyes!! However, if he was already receiving SSDI and then tried to return to work I believe they would work with him and still pay some type of benefit for so many months. That's our goverment at work!! Yes, they penalize you if you are making the effort to work rather than supplement your loss because you can't work full-time!! What a shame!! Good luck to you. I would also adivse everyone that is having problems to seek legal advice. Do not appeal without an attorney!! Good luck and keep up the fight my prayers are with you all. Helen

He needs to have his doctor say he is totally disabled. And stop trying to work. Because as long as he can work they will not consider him disabled.

Rather than fighting this battle yourselves, see if you can enlist a professional social worker. If your father has been hospitalized recently, call the hospital's social work office. If he has been on dialysis (you mentioned renal cell CA), there should definitely be a social worker in the picture.  They do this stuff (like battle Social Security) all the time and may know some tricks.  Your dad is to be praised for his valiant efforts but he is likely to get more and more tired. Rally the troops to come to his aid.