Should Cystic Fibrosis be declared a disability?

[believingjesus]

I agree totally. I don't understand why the CFF did not speak up on this forum and other forums and let people know that the SSA had an open period for people to let them know about their situations before the SSA closed it and is now deciding on restricting disability further.

I also agree how we can let illegal immigrants in this country and feed and house them and provide medical and ALSO aid other nations when people in this nation are in such dire need. I know there are people who abuse the system. They should go after those people. Most people with CF truly need the help that disability would provide so they can do everything they can to stabilize their health and stay healthy. I feel we are getting no where though as I don't know what to do or how to do it.

 

[believingjesus]

Just wanted to post that I had stated previously on this thread or another one that my Mothers friend had cancer and only got disability a couple months before she passed away. My mother lives in Oklahoma and I'm in Kansas. I asked my Mom this last weekend why it took so long for disability when her friend was clearly dying. My Mother said I was wrong - she NEVER did get disability. They denied her all the way. She passed away and never got disability. My Mother said her friends work contributed to helping her out before she passed away. She died and did not get disability. She had cancer and I remember my mother saying that she kept applying for disability and kept getting denied. I thought that she had got help the last couple months but that was from her friends work - NOT through the SSA. This goes to show that people who are getting denied absolutely truly need the help but are getting tossed to the side. This is a disgrace as all the SSA had to do was look at her medical records which said she did not have long to live. Very, very sad. I am so glad that some are getting approved - like Jshets son which should have qualified just on the CF condition but also has other hardships to endure. He more than deserves disability. But the system is so faulty that many are actually dying and never getting it.

 

[randford]

I don't understand why CFF doesn't monitor this forum and provide feedback. Perhaps they do under cloak and we don't know it. But you'd think with so many people crying out for help, there would be some measure of cross communication and feedback. Or perhaps some degree of marketing to promote CF Lifestyles. I have heard that the marketing and communication of CF Lifestyles from CFF is in the works. So we will see.

However, it is incumbent among us to communicate to CFF and let them know how we feel, individually and collectively. Yes, there are advocacy groups. Perhaps we all should reach out to them. They fight for us, just as CFF does. But we can't sit back. We have to get involved, no matter what the circumstance. We should all protect each other.

I agree totally. I don't understand why the CFF did not speak up on this forum and other forums and let people know that the SSA had an open period for people to let them know about their situations before the SSA closed it and is now deciding on restricting disability further.

I also agree how we can let illegal immigrants in this country and feed and house them and provide medical and ALSO aid other nations when people in this nation are in such dire need. I know there are people who abuse the system. They should go after those people. Most people with CF truly need the help that disability would provide so they can do everything they can to stabilize their health and stay healthy. I feel we are getting no where though as I don't know what to do or how to do it.

 

[randford]

That's an outrage about your mother's friend. I so am happy for Jshets. But you are right. People are suffering and dying. That's your death panel. That along with affordability.

Just wanted to post that I had stated previously on this thread or another one that my Mothers friend had cancer and only got disability a couple months before she passed away. My mother lives in Oklahoma and I'm in Kansas. I asked my Mom this last weekend why it took so long for disability when her friend was clearly dying. My Mother said I was wrong - she NEVER did get disability. They denied her all the way. She passed away and never got disability. My Mother said her friends work contributed to helping her out before she passed away. She died and did not get disability. She had cancer and I remember my mother saying that she kept applying for disability and kept getting denied. I thought that she had got help the last couple months but that was from her friends work - NOT through the SSA. This goes to show that people who are getting denied absolutely truly need the help but are getting tossed to the side. This is a disgrace as all the SSA had to do was look at her medical records which said she did not have long to live. Very, very sad. I am so glad that some are getting approved - like Jshets son which should have qualified just on the CF condition but also has other hardships to endure. He more than deserves disability. But the system is so faulty that many are actually dying and never getting it.

 

[believingjesus]

Yes it is very sad when people actually die and could not qualify for disability and tried many times. I guess she looked like she could still work and even though she was doing all she could to fight cancer - they still didn't approve it and she died. I don't understand how this could happen or how it happens to people with CF that are declining and need the help so desperately. All the CFF would have to do is monitor this forum or forums like it and they would know how they could help but- like the discussion link you posted Randford - when that question was asked of the head executives at the CFF, they immediately spoke that they can not help everyone or they would not have any money left but have chosen to use the money to find a cure. I hope they hurry as many need it right now. I hope they are investing that money right now into more research and treatments. Me and my sons raised money for many years for the CFF and always sent it in or I would drop it off at the location of the walks. I think probably everyone with CF has contributed in some way. I hope they are working on it already.

 

[randford]

Just look at pages 18 and 19 on the Patient Registry Report - 2013. Specifically on page 18, (The Socioeconomic Characteristics of Adults 18 Years and Older with CF in 2013). And keep health insurance coverage in mind.

Only 34.3% of patients are fully employed and 12% is part time. That's 46.3%. Sounds good, right? Keep in mind that part timers most likely have to pay for their own insurance rather than being on employer-based group insurance. There should really be a statistic that indicated the number of CF patients paying for their own insurance.

Then look at the insurance information on page 19. Look at how more patient are going on assistance as they get older. Further, look how many patients are on their parent's insurance. What's happening it that more patients (26 an older) are going on Medicare/Medicaid/PARC assistance once they are off their parent's insurance. So essentially the pressure is on and the economic challenges become far greater, not to mention employment becomes a bigger challenge as patients age. All of the hinges on employment, no doubt. Without it, patients have few options...other than SSDI, if they can get it. To round it out, there is only 17.6% disabled and 8.2% unemployed. It makes you wonder how much greater that 17.6% might be if SSDI requirements were less stringent.

http://www.cff.org/UploadedFiles/re...nnual_Data_Report_to_the_Center_Directors.pdf

 

[randford]

I really wish CFF would give us an update on the SSA negotiations. That's the disconnect. We don't always know what's going on or where to look.

Yes it is very sad when people actually die and could not qualify for disability and tried many times. I guess she looked like she could still work and even though she was doing all she could to fight cancer - they still didn't approve it and she died. I don't understand how this could happen or how it happens to people with CF that are declining and need the help so desperately. All the CFF would have to do is monitor this forum or forums like it and they would know how they could help but- like the discussion link you posted Randford - when that question was asked of the head executives at the CFF, they immediately spoke that they can not help everyone or they would not have any money left but have chosen to use the money to find a cure. I hope they hurry as many need it right now. I hope they are investing that money right now into more research and treatments. Me and my sons raised money for many years for the CFF and always sent it in or I would drop it off at the location of the walks. I think probably everyone with CF has contributed in some way. I hope they are working on it already.

 

[CyrilCrodius]

This may help : http://www.mesrs.gouv.qc.ca/en/aide...s-health-problem/major-functional-disability/
Cystic Fibrosis qualifies as a "major functional disability" in Québec and getting on permanent disability here for CF is not hard at all. All we need is a confirmation of the diagnosis. The disease is listed for automatic eligibility, meaning that the severity isn't taken into account. I guess they rely on the doctors to determine whether or not we are disabled.

 

[triples15]

I really wish CFF would give us an update on the SSA negotiations. That's the disconnect. We don't always know what's going on or where to look.

Right now they are just waiting to hear from the SSA regarding their decision. The SSA said they would make the final decision in October 2014, but has yet to decide, apparently. They (the SSA) stopped taking any public comments way back in April of 2013, so there really is no negotiating going on whatsoever. Just twiddling our thumbs and waiting......

 

[believingjesus]

Thank u Cyril - the disease doesn't change from country to country or nation to nation so strange how falling under the definition of "disabled" does. I guess they think the U.S. CFers don't have enough to deal with and need more struggles. Thanks for your input.

 

[randford]

"triple15", Really? You have got to be kidding me! That's really upsetting. I think I'll talk to the CF legal hotline. Perhaps they can offer an update. I'm watching CSPAN right now and I'm appalled at the people who got disability for seemingly trivial conditions, in comparison to CF yet we have to practically flat line and see a tunnel of white light before qualifying and even that's not a guarantee. Why can't CFF give us a page on the website that says, here's where we are? I don't get it. But I will be asking why. ;-)

Right now they are just waiting to hear from the SSA regarding their decision. The SSA said they would make the final decision in October 2014, but has yet to decide, apparently. They (the SSA) stopped taking any public comments way back in April of 2013, so there really is no negotiating going on whatsoever. Just twiddling our thumbs and waiting......