Right, "Jeana_Lynn". To qualify for SSD benefits with CF, you must either meet the Blue Book listing or be found eligible for benefits under a “medical vocational allowance”, which essentially shows that while your case doesn’t match the CF listing, you are nonetheless disabled according to SSA regulations.
Should Cystic Fibrosis be declared a disability?
- Thread starter randford
- Start date
believingjesus
Banned
I say "AMEN!" to everything you said Randford! I really don't know where to go from here but I think everyone who has CF, whether they have a child with it or they are an adult with it, should rally together to make a change in the disability laws for people with CF.
CF is a horrible disease that changes the lives of the people that have it drastically, and it also takes lives. A person should not have to get so desperately sick to qualify for disability when people out there break an arm and get it but people who have a lung and pancreas disease can not.
I do not know why more people are not afraid of the discrimination that will take place when their employers start seeing charges to the group health insurance for Kalydeco. I, for one, sure as heck want my son to get it. I feel in order to get it we will be risking our jobs. It costs $300,000 a year.
I know if people were able to qualify for disability because they have CF then they could also be covered through Medicaid and would not have to fear getting their much needed medicines, appointments, tests, and hospitalizations. When the U.S. government can consider paying for people to go to community college, I do not understand how they could actually let a population of people just get sick and so debilitated that they can not regain the health they had because they can't afford to keep their selves healthy. It is shameful. Children grow up and become adults and very quickly too. I have been home with my boys for over 21 years now. They grow up fast. The focus should not only be on the problems children with CF face but also the problems adults with CF face. I know many children do not make it to adulthood but those that do have always had that fear in them and are struggling to stay healthy and alive.
CF is a horrible disease that changes the lives of the people that have it drastically, and it also takes lives. A person should not have to get so desperately sick to qualify for disability when people out there break an arm and get it but people who have a lung and pancreas disease can not.
I do not know why more people are not afraid of the discrimination that will take place when their employers start seeing charges to the group health insurance for Kalydeco. I, for one, sure as heck want my son to get it. I feel in order to get it we will be risking our jobs. It costs $300,000 a year.
I know if people were able to qualify for disability because they have CF then they could also be covered through Medicaid and would not have to fear getting their much needed medicines, appointments, tests, and hospitalizations. When the U.S. government can consider paying for people to go to community college, I do not understand how they could actually let a population of people just get sick and so debilitated that they can not regain the health they had because they can't afford to keep their selves healthy. It is shameful. Children grow up and become adults and very quickly too. I have been home with my boys for over 21 years now. They grow up fast. The focus should not only be on the problems children with CF face but also the problems adults with CF face. I know many children do not make it to adulthood but those that do have always had that fear in them and are struggling to stay healthy and alive.
You made an excellent point about the government paying for two years of community college. Of course that's just political hyperbole and the legislation will never be passed with the GOP in control of the house and senate. However, I think given that the GOP controls congress, we may be in a rare position to petition/lobby for a change of SSDI requirements for CF patients.
We should not become sick enough or destitute enough or both, just to survive. As I expressed to CFF and PARC, what's the point of surviving CF when you can survive life? So we all have to rally and share our collective voice for the other half. The survival of life. Why should it be more difficult than CF itself?
The good news is that they are listening and working on programs to help. No doubt they do amazing things with research. It's great that they are doing this as well.
We should not become sick enough or destitute enough or both, just to survive. As I expressed to CFF and PARC, what's the point of surviving CF when you can survive life? So we all have to rally and share our collective voice for the other half. The survival of life. Why should it be more difficult than CF itself?
The good news is that they are listening and working on programs to help. No doubt they do amazing things with research. It's great that they are doing this as well.
Randford,
What excellent points you bring up. I feel like I could be writing a lot of this myself.
Thanks so much for raising these points, and trying to make a difference!!
I completely agree that CFers shouldn't have to be almost on their deathbed in order to receive SSDI. By then it is too late. If it were easier to receive earlier, people would be able to focus more on maintaining their health while they still have a tiny bit of health left!! In my case, I was lucky to receive it when I did, and after I quit working and made taking care of myself my job, my decline slowed WAY down. In fact, my fev1 is basically where it was 6 years ago. Whereas when I was working it was tanking.
Anyway, I'd like to write a lot more but need to get off to bed. I wanted to mention though, that unfortunately it would definitely be an uphill battle with Social Security to ease the impairment listing for cystic fibrosis, being as 2 years ago they proposed changes to make it even MORE difficult than it currently is. When this was announced we all did what we could as far as writing to our representatives, making comments to the SSA regarding their proposed changes, etc. The CFF opposed the changes and sent a letter stating the reasons against them. Also the doctors/directors of many CF clinics (I believe 100 doctors) signed a letter opposing the changes.
All of the documentation stated that they would take "final action" in October 2014, meaning deciding whether to adopt the proposed changes or not. I've not heard anything about the decision, and haven't been able to find anything in my googling. I do see that currently the listing is still the same, so we can only hope they are not changing it become even harder.
Here is one of the threads from 2013:
http://forum.cysticfibrosis.com/thr...adults-and-families?highlight=social+security
If you go to page 3 and click on the links in my comment you can read the proposed changes and also see the comments against it, etc. You can also read the letter written by the CFF.
I don't want to be a Debbie Downer, but since it seems they are currently bent on making the impairment listing HARDER to meet, it's SUPER unlikely that we would have any success in getting it eased.
That doesn't mean there aren't other avenues we can take, or that we should quit trying. I agree something should be done to better support CF patients needs across the lifetime.
Thanks again! I have really been enjoying the couple of threads on this topic!
Autumn 34 w/CF
What excellent points you bring up. I feel like I could be writing a lot of this myself.
Thanks so much for raising these points, and trying to make a difference!! I completely agree that CFers shouldn't have to be almost on their deathbed in order to receive SSDI. By then it is too late. If it were easier to receive earlier, people would be able to focus more on maintaining their health while they still have a tiny bit of health left!! In my case, I was lucky to receive it when I did, and after I quit working and made taking care of myself my job, my decline slowed WAY down. In fact, my fev1 is basically where it was 6 years ago. Whereas when I was working it was tanking.
Anyway, I'd like to write a lot more but need to get off to bed. I wanted to mention though, that unfortunately it would definitely be an uphill battle with Social Security to ease the impairment listing for cystic fibrosis, being as 2 years ago they proposed changes to make it even MORE difficult than it currently is. When this was announced we all did what we could as far as writing to our representatives, making comments to the SSA regarding their proposed changes, etc. The CFF opposed the changes and sent a letter stating the reasons against them. Also the doctors/directors of many CF clinics (I believe 100 doctors) signed a letter opposing the changes.
All of the documentation stated that they would take "final action" in October 2014, meaning deciding whether to adopt the proposed changes or not. I've not heard anything about the decision, and haven't been able to find anything in my googling. I do see that currently the listing is still the same, so we can only hope they are not changing it become even harder.
Here is one of the threads from 2013:
http://forum.cysticfibrosis.com/thr...adults-and-families?highlight=social+security
If you go to page 3 and click on the links in my comment you can read the proposed changes and also see the comments against it, etc. You can also read the letter written by the CFF.
I don't want to be a Debbie Downer, but since it seems they are currently bent on making the impairment listing HARDER to meet, it's SUPER unlikely that we would have any success in getting it eased.
That doesn't mean there aren't other avenues we can take, or that we should quit trying. I agree something should be done to better support CF patients needs across the lifetime.
Thanks again! I have really been enjoying the couple of threads on this topic!
Autumn 34 w/CF
believingjesus
Banned
Autumn: I read the Forum link you posted from 2013. You were very involved with trying to fight that proposed legislation. I would like to know if that passed?! I don't know if the Social Security Administration fully understands cystic fibrosis? I talked to a man with CF when my son was diagnosed years ago. All he did every day was everything to stay healthy and that was his job and it was a lot! He has since been transplanted with new lungs and as far as I know, is doing well. CF is a progressive disease. I do not know why they would require 3 hospitalizations a year as to me that person would have to be in pretty bad health to be hospitalized that many times. I also knew a lady who was a friend of my mothers and she had cancer. She was denied disability right up until 2 months before she passed away. It is despicable the way the law is for people with CF and cancer. People with CF appear healthy to everyone else so it appears they should not be at the gym and could be working full-time, etc. but the truth is their lungs are filling up with mucus that collects bacteria and leads to infections and they need to be spending their days doing everything to stay healthy. Just because someone appears healthy does not mean they are. The inside organs matter. I don't get the SSA thinking. I do not know why they do not understand it all.
I saw that someone had posted the presidents address on the thread back in 2013. I agree with that as this president seems to care about people with special health conditions unlike any other president ever. I know he is not perfect and has done many things that may not be considered good for America but even if he just had done the one thing - the Affordable Care Act - that was HUGE for my family. I did write the president back when he was proposing his Act. I thanked him for doing that for my son in a letter addressing why. I was sent a letter back and then received a phone call asking for the names of everyone in my family and their information and they did checks on us and invited us to attend an event the president was doing in promoting his Act. They were trying to set the trip up but even though we were so honored - my son did not and still does not want anyone to know he has CF. He does not want to be looked at differently or receive special treatment and he does not want to be discriminated against because of it. That was the reason we did not accept the invitation. We knew it would be publicized in our daily newspaper and he did not want that. I really do think that if people could write the president and express their situations because of CF that he would listen or have someone listen for him. He does seem to care more than any other president has.
I saw that someone had posted the presidents address on the thread back in 2013. I agree with that as this president seems to care about people with special health conditions unlike any other president ever. I know he is not perfect and has done many things that may not be considered good for America but even if he just had done the one thing - the Affordable Care Act - that was HUGE for my family. I did write the president back when he was proposing his Act. I thanked him for doing that for my son in a letter addressing why. I was sent a letter back and then received a phone call asking for the names of everyone in my family and their information and they did checks on us and invited us to attend an event the president was doing in promoting his Act. They were trying to set the trip up but even though we were so honored - my son did not and still does not want anyone to know he has CF. He does not want to be looked at differently or receive special treatment and he does not want to be discriminated against because of it. That was the reason we did not accept the invitation. We knew it would be publicized in our daily newspaper and he did not want that. I really do think that if people could write the president and express their situations because of CF that he would listen or have someone listen for him.
He does seem to care more than any other president has.Believing,
Believe it or not, I have no idea where this ended up going! After all of that, I never heard another peep anywhere about the outcome of all of it. It said that their final action would be taken in October 2014, as to deciding if the changes would be adopted or not, but I can't find that information anywhere. I searched the docket number and there are no documents regarding the decision. I also googled and googled and can't come up with anything but the initial info regarding the proposed changes.
I'm hoping like heck the changes weren't adopted. I see that the impairment listing is still the same at present, so the changes haven't been enacted yet. Hopefully that's a good sign.
That's very cool about being invited to the Whitehouse. Bummer you didn't go, but I do understand your son's reasons.
Autumn
Believe it or not, I have no idea where this ended up going! After all of that, I never heard another peep anywhere about the outcome of all of it. It said that their final action would be taken in October 2014, as to deciding if the changes would be adopted or not, but I can't find that information anywhere. I searched the docket number and there are no documents regarding the decision. I also googled and googled and can't come up with anything but the initial info regarding the proposed changes.
I'm hoping like heck the changes weren't adopted. I see that the impairment listing is still the same at present, so the changes haven't been enacted yet. Hopefully that's a good sign.
That's very cool about being invited to the Whitehouse. Bummer you didn't go, but I do understand your son's reasons.
Autumn
Simba15
Member
CF already IS a disability. The title of your post is inaccurate.
I think you are asking if we should lobby for more attention to qualify for federal help and the answer is YES! I am the oldest CFer in my state, I have been told. I worry what will happen to me if I can't work anymore.
I think you are asking if we should lobby for more attention to qualify for federal help and the answer is YES! I am the oldest CFer in my state, I have been told. I worry what will happen to me if I can't work anymore.
Simba15
Member
Completely agree. What can we do to help get the ball rolling?
believingjesus
Banned
Simba 15: I ready and willing to lobby for federal help, I just don't know how or where to start. I was reading the SS disability guidelines for CF and they are outrageous. They basically want a person with CF to be on their deathbed, just like they want someone with cancer. I honestly can not believe it. I'm ready.
Geri Rice Dunegan
New member
My child with CF also has cognitive issues from a stroke she suffered at two weeks of age and having gran mal seizures constantly while on life support at that time for almost six weeks. She was labeled as failure to thrive and not diagnosed with CF until she was over four years of age. By then she was so delayed from malnutrition and malabsorption she is disabled.
Wow, Randford, have you checked out the cysticfibrosis.com Facebook post about this thread? People are coming out of the woodwork. There are currently 749 likes, 162 comments, and 204 shares! Maybe you should not be discouraged. People ARE interested in this, and the vast majority are supporting your position.
I especially appreciated this comment:
Mike Amend : "As a Type 1 Diabetic for the past 37 years and the father of an 18 year old CF patient, I am surprised it is not technically a disability already. Diabetes is a disability and I can tell you that CF can be far more debilitating than diabetes. You can thrive with both diseases, but it is impossible to thrive with CF unless you put in hours of daily therapy and submit yourself to weeks of being in the hospital. Do not look at the word, disabled, and believe that it will hold you back. It will not. However, the label will provide much needed protection. There is no question in my mind that CF patients should be covered under a protective status. Not because of what they cannot do, but so that they are enabled to contribute to society AND stay healthy."
Not sure if Mike is a member here, but well said Mike! Amen.
I think you are on the right track Randford, it's just that many people (myself included) need to be told exactly how to help. We need a more concerted approach. Do we say that everyone who thinks this is an issue writes a letter to the CFF? The CFF and their state representatives? The SSA? Maybe a sample letter that people could alter to fit their own personal situation? If we came up with EXACTLY what to do and when to do it to make this an organized effort perhaps more people would participate and gives a better chance for the masses to be heard. What about a national news outlet doing a story about the expense of our meds, the time we spend doing treatments, the time spent on IVs/in the hospital etc. I think the average person knows NOTHING of how expensive it is to have cystic fibrosis. I've honestly had people say things to me like "but you have insurance, right?", insinuating that I can't be paying that much for my care. HA!! If they followed just ONE CF patient around for a few days/weeks I think everyone would be shocked.
Anyway, that's my 2 cents.
Autumn 34 w/CF
I especially appreciated this comment:
Mike Amend : "As a Type 1 Diabetic for the past 37 years and the father of an 18 year old CF patient, I am surprised it is not technically a disability already. Diabetes is a disability and I can tell you that CF can be far more debilitating than diabetes. You can thrive with both diseases, but it is impossible to thrive with CF unless you put in hours of daily therapy and submit yourself to weeks of being in the hospital. Do not look at the word, disabled, and believe that it will hold you back. It will not. However, the label will provide much needed protection. There is no question in my mind that CF patients should be covered under a protective status. Not because of what they cannot do, but so that they are enabled to contribute to society AND stay healthy."
Not sure if Mike is a member here, but well said Mike! Amen.
I think you are on the right track Randford, it's just that many people (myself included) need to be told exactly how to help. We need a more concerted approach. Do we say that everyone who thinks this is an issue writes a letter to the CFF? The CFF and their state representatives? The SSA? Maybe a sample letter that people could alter to fit their own personal situation? If we came up with EXACTLY what to do and when to do it to make this an organized effort perhaps more people would participate and gives a better chance for the masses to be heard. What about a national news outlet doing a story about the expense of our meds, the time we spend doing treatments, the time spent on IVs/in the hospital etc. I think the average person knows NOTHING of how expensive it is to have cystic fibrosis. I've honestly had people say things to me like "but you have insurance, right?", insinuating that I can't be paying that much for my care. HA!! If they followed just ONE CF patient around for a few days/weeks I think everyone would be shocked.
Anyway, that's my 2 cents.
Autumn 34 w/CF
believingjesus
Banned
FOR ANYONE OUT THERE WHO HAS A DESIRE TO TRY TO STOP LEGISLATION PASSING THIS YEAR THAT WILL FURTHER RESTRICT THE DISABILITY GUIDELINES FOR PEOPLE WITH CF: (Since a decision has not been given yet from the SSA, it is never too late, especially coming from the people who live with CF)
One option:
Email President Obama at: www.whitehouse.gov your concerns.
OR
Type or write in ink and as neatly as possible on an 8 1/2 x 11 inch piece of paper your concerns. Include your return address on the letter and on the envelope. If you have an email address, please include that:
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500
One option:
Email President Obama at: www.whitehouse.gov your concerns.
OR
Type or write in ink and as neatly as possible on an 8 1/2 x 11 inch piece of paper your concerns. Include your return address on the letter and on the envelope. If you have an email address, please include that:
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500
Renee Vasquez
New member
I live in Michigan and have the "Children's Special Health" insurance, which covers all my CF related medical. I recently looked into moving to New Orleans with my fiance for a job he was being offered. I asked my social worker for info on how insurance there would work. . . that notion went out the door quick. Before looking into it I assumed every state had the program I have here to help cover the impossible costs of CF. I BARELY get any medications cause i'm super healthy, all i need is Enzymes and i couldn't even afford that bill without struggling. I think Disability would help many, and i don't thing the sigma of the word should be a game changer. I understand being a teen is tough, and adding on a disease and medications, and special needs on top of those already rough teenage years isn't fair. . . but neither is struggling to cover costs. I luckily have not really had to face this struggle since having Children's Special Health, relatively great health and a fiance that takes good care of me. BUT my brother at 25 is all kinds of sick, prolly 50% of his week. Could he work? Some days yes, some days no. But most jobs wont let you call out 2-3 times a week because your in pain, or hacking up a lung. So he is on disability. WHICH he had to fight for over 2 years to get. All the time living with my mother cause you can't afford to live any other way when you make nothing cause you can't hold down a job. I know at 23 living with your mom isn't completely unheard of, but try having any relationship as a 23 yr old guy, already sick, no cash cause you can't hold down a job, and living at home, sick 50% of the time. Its a sad life. Once his disability got approved, after over 2 years of fighting to prove the obvious, and being told hes just not quite sick enough. Like someone above said, not laying in a hospital flatlining just yet. His life changed, it looked up a bit. Sure hes still not doing great and he still has doctors appointment all the time and still feels like crap 50% of the time. BUT he has a house now, he has a social life because his whole life isnt a single room in someone elses home. Hes learning to do adult things like manage his own life, his bills, his own cooking, his own laundry. Things that when you live with your mom and your her baby you just have done for you. Its changed alot in his life and personality. But if CF was a disability it wouldn't have had to be such a fight to prove hes actually sick. If you feel like your healthy and YOU don't need the help thats fine. I personally feel that way too, I don't need it. I'm capable of working, but its bigger than me and mine. Its everyone who has CF. The word is just a word, if you don't need the help, don't take it. BUT maybe support those who do cause the difference to them could be everything. Just my opinion.
Autumn, I didn’t know that SSDI and Medicare weren’t in sync. I would totally support a movement to change the law so that Medicare and SSD came with the same approval. That makes tons of sense to me. I also agree with the ability to apply for “impairment listing” when your case is severe but doesn't meet the exact criteria. So what can we do to improve that so the process is more straight forward and fair all peoples with chronic conditions?
To be clear, I totally agree with the CFF letter to congress in that our SSD classification needs to be “consistent with patterns of care for those with cystic fibrosis (CF)” and the recommendations for “accurate measures of the disability of children and adults with CF.” (side note, Bruce Marshall who co-authored this letter was one of my clinic Dr 15 years back, and has my full support and respect). http://www.cff.org/UploadedFiles/GetInvolved/Advocate/SSA-Disability-Critera-Comments-4-13.pdf
I guess I just don’t agree with “Compassionate Allowance” being assigned to a CF dx (note: compassionate allowance is the technical term from the SSDI that a disease diagnosis is an automatic approval). This might put me on a different page than some, but I’ll try to be open minded enough to entertain arguments to the contrary.
( edit to I fix my dead link to the CFF letter to the SSA)
To be clear, I totally agree with the CFF letter to congress in that our SSD classification needs to be “consistent with patterns of care for those with cystic fibrosis (CF)” and the recommendations for “accurate measures of the disability of children and adults with CF.” (side note, Bruce Marshall who co-authored this letter was one of my clinic Dr 15 years back, and has my full support and respect). http://www.cff.org/UploadedFiles/GetInvolved/Advocate/SSA-Disability-Critera-Comments-4-13.pdf
I guess I just don’t agree with “Compassionate Allowance” being assigned to a CF dx (note: compassionate allowance is the technical term from the SSDI that a disease diagnosis is an automatic approval). This might put me on a different page than some, but I’ll try to be open minded enough to entertain arguments to the contrary.
( edit to I fix my dead link to the CFF letter to the SSA)
believingjesus
Banned
Part of the letter I received from the CFF stated:
In 2013, the SSA published a proposal to change the way it determines whether people with respiratory diseases, including CF, are eligible for disability benefits. Concerned that these proposed changes would make it MORE difficult for those with CF to access benefits, the CF Foundation submitted comments outlining its concerns to the SSA, and mobilized more than 130 CF care center physicians to write a letter to the agency, as well.
In addition, the CF Foundation and the CF community mobilized 37 members of Congress to write a letter to SSA expressing concern about the proposal. The SSA has since been in deliberations over the proposal and is expected to return a final decision this year. While we cannot predict what they will decide, we are cautiously optimistic that the result will benefit the CF community.
That is what the letter stated about the proposal to change the way it decides people are eligible for benefits. If people with CF don't even qualify when they are needing it so badly like the brother of the lady who posted on here earlier today, Renee Vasquez, and that is by their determination standards now - I am betting a person would be on their deathbed before they would qualify if this gets passed. I really don't understand how the SSA could allow this to a group of people who need it so desperately just so they can maintain their lung function and live. I know the government doesn't have to support people but who are we if we can't even take care of each other on this earth? I don't expect people with CF to qualify when they have good lung functions as my son does now. He is no where needing it. I was suggesting that the restrictions that are in place NOW be eased so people do not have to get so bad off in their health before they can get medicare insurance and SSD. There are so many people that need the restrictions eased, not tightened as this proposal is asking.
With all the work already being done by the CFF to the Social Security Administration, I would imagine their hands are tied now, just waiting to see what happens. I know it might sound funny to write a letter to the president. I never would have imagined I would have done that but I did when he was proposing his healthcare idea. I really believe that may be the only option left, but maybe I am wrong. I left the address in an earlier post in case anyone wants to write.
In 2013, the SSA published a proposal to change the way it determines whether people with respiratory diseases, including CF, are eligible for disability benefits. Concerned that these proposed changes would make it MORE difficult for those with CF to access benefits, the CF Foundation submitted comments outlining its concerns to the SSA, and mobilized more than 130 CF care center physicians to write a letter to the agency, as well.
In addition, the CF Foundation and the CF community mobilized 37 members of Congress to write a letter to SSA expressing concern about the proposal. The SSA has since been in deliberations over the proposal and is expected to return a final decision this year. While we cannot predict what they will decide, we are cautiously optimistic that the result will benefit the CF community.
That is what the letter stated about the proposal to change the way it decides people are eligible for benefits. If people with CF don't even qualify when they are needing it so badly like the brother of the lady who posted on here earlier today, Renee Vasquez, and that is by their determination standards now - I am betting a person would be on their deathbed before they would qualify if this gets passed. I really don't understand how the SSA could allow this to a group of people who need it so desperately just so they can maintain their lung function and live. I know the government doesn't have to support people but who are we if we can't even take care of each other on this earth? I don't expect people with CF to qualify when they have good lung functions as my son does now. He is no where needing it. I was suggesting that the restrictions that are in place NOW be eased so people do not have to get so bad off in their health before they can get medicare insurance and SSD. There are so many people that need the restrictions eased, not tightened as this proposal is asking.
With all the work already being done by the CFF to the Social Security Administration, I would imagine their hands are tied now, just waiting to see what happens. I know it might sound funny to write a letter to the president. I never would have imagined I would have done that but I did when he was proposing his healthcare idea. I really believe that may be the only option left, but maybe I am wrong. I left the address in an earlier post in case anyone wants to write.
Hi Ethan!
Sorry if I was confusing, but when you qualify for SSDI, you DO automatically qualify for Medicare. They are tied together. What I was saying is that there is a 24 month waiting period before the Medicare benefit begins. So after one starts receiving Social Security, it won't be until 24 months later that their Medicare starts.
I'm on the fence about the "Compassionate Allowance". I lean toward your opinion that is should not be one. Although, I do believe if it WAS a compassionate allowance the number of people with CF who abused it would still be FAR FAR fewer than the general population who is currently abusing the SS system. I think that people with CF want to work, and want to be self-sufficient. I also believe that the current impairment listing should absolutely NOT be changed to make it more difficult to qualify, rather it should be eased some to make it easier than it currently is. Maybe "eased" isn't even the best term. Let's say "changed" to make it more accurate reflection of disease severity.
Autumn
Thanks for that info. Believing!! That explains why we have heard nothing on their decision. Now there's nothing we can do but await their decision as far as that goes. As you said, if they do accept the changes, CFers will have to be very, very sick to qualify. It's disgusting really. Under the proposed changes, home IVs will not count as an "intervention" in managing our CF. So for example, when I had a nasty exacerbation a couple years ago with an almost 20% dip in lung function, spent 4 weeks on IV antibiotics (at home), feeling miserable, and working my butt off to get better, this would not have counted as any medical intervention for my cystic fibrosis under the proposed new guidelines. Under the new guidelines they are saying that you are not so sick that you have to be hospitalized it doesn't count as an intervention. Apparently you aren't really sick if you're not admitted. I only wish I was joking. That was one of the things that the doctor's and the CFF were objecting to since many CF clinics are moving toward trying to keep patients OUT of the hospital to avoid hospital acquired infections/illnesses. They said hospital admissions are not a good indicator of how sick a CF patient is, so why would that be one of the things they are looking for to meet the criteria?? Ugh... If they accept the changes and change the listing after hearing from all the docs and the CFF I might honestly fall out of my chair. :/
Anyway, thanks again for that info!! I was really curious. Here we worked and worked and then heard nothing!!
Autumn
believingjesus
Banned
Yes I know Autumn. I read the changes the CFF is proposing to make things better than the current rules but the SSA must really not understand cystic fibrosis to propose further restrictions. It makes me so sad to read the post from Renee Vasquez about her brother. His lung function and health declined a lot after fighting to get on disability and then he had to wait 24 months to get on Medicare.
We don't have enough to pay for daily routine medications when my son is healthy if we didn't have insurance now. We don't make that kind of money to support Tobi and Pulmozyme and Creon - just those three if we had to pay the full price. I do not see how we could let that happen to a person who just wants to live. How we could let their health decline to transplant levels just for a 24 month waiting period? It makes me sick. If the new legislation passes I really do fear for all people with CF. Again, I am trying to overcome all this fear. I'm trying to remember Jesus when I fear or start to worry. I know He has it all in His hands. I don't understand how the SSA when they had not proposed changing the rules since 1993 that they would only leave open a window from February to the beginning of April for people to give them their insight. It seems cruel. I hope things are passed like the CFF proposed. I guess the CFF really is doing a great job. Have a great day!
We don't have enough to pay for daily routine medications when my son is healthy if we didn't have insurance now. We don't make that kind of money to support Tobi and Pulmozyme and Creon - just those three if we had to pay the full price. I do not see how we could let that happen to a person who just wants to live. How we could let their health decline to transplant levels just for a 24 month waiting period? It makes me sick. If the new legislation passes I really do fear for all people with CF. Again, I am trying to overcome all this fear. I'm trying to remember Jesus when I fear or start to worry. I know He has it all in His hands. I don't understand how the SSA when they had not proposed changing the rules since 1993 that they would only leave open a window from February to the beginning of April for people to give them their insight. It seems cruel. I hope things are passed like the CFF proposed. I guess the CFF really is doing a great job. Have a great day!
Wow Autumn, you just made my day! I didn't know that it could be posted on FB and I'm following the CysticFibrosis.com page but where do I find the post? I will try to find it. Thanks.
Anyway, I agree with Mike Amend's post and so many others in different threads. A declaration of disability is all about protection, not the semantics of the word. There are those who are employed and those on SSDI but there are many who fall between that. In addition, if you lose your job, what then? We need a safety net for those who lose their jobs or those who wait so long for SSDI, they suffer and even in some cases die while waiting. It breaks my heart to see so many people with individual struggles and little more than PARC to solve them. I mean no disrespect to them. They are wonderful and helpful. But they are limited by things beyond their control. And Mike is so right when you consider the time and effort in maintenance just to live. Well said, Mike. If diabetes is a disability, certainly so can Cystic Fibrosis. What a great argument.
I think you're right, Autumn. We need to create some way to gather our collective voices into one voice to express ourselves to the very top levels at CFF. Certainly there are advocacy groups and no doubt there are things in the works to support CF lifestyles but there is a big disconnect. Many patients, me included, have no idea what's going on.
I will investigate how to express our needs on my end. There is no doubt CFF is listening. I know that for a fact. We just need to craft our message in a way that makes the best impact. Individual stories are so impactful. Perhaps that should be considered. Video stories are extremely impactful. But it depends to whom we deliver. We could create a YouTube channel, for example. The caveat is that some are understandably private about their struggles. Can we have a pole on FB about it? We have a substantial rally cry. We just need to coordinate delivery and message, then leverage it accordingly.
Ultimately it's up to us. All patients/families. We all need to come together on this. I cannot phantom why any patient should deteriorate and even die, waiting for assistance because of current requirements imposed. It infuriates me. CFF has worked so hard to bring us along into adulthood, only for us to falter because of a complete lack of understanding of the disease by those who literally can decide our fate. Only CFF has the power to lobby for legislation. And perhaps we could coordinate a grassroots campaign to compliment CFF's effort.
Anyway, thank you for this Autumn. I will get busy. If you and others can test the water and gather ideas, that would be awesome. I will let you know what I find out. Gosh, you really made my day! ;-)
Randford
Anyway, I agree with Mike Amend's post and so many others in different threads. A declaration of disability is all about protection, not the semantics of the word. There are those who are employed and those on SSDI but there are many who fall between that. In addition, if you lose your job, what then? We need a safety net for those who lose their jobs or those who wait so long for SSDI, they suffer and even in some cases die while waiting. It breaks my heart to see so many people with individual struggles and little more than PARC to solve them. I mean no disrespect to them. They are wonderful and helpful. But they are limited by things beyond their control. And Mike is so right when you consider the time and effort in maintenance just to live. Well said, Mike. If diabetes is a disability, certainly so can Cystic Fibrosis. What a great argument.
I think you're right, Autumn. We need to create some way to gather our collective voices into one voice to express ourselves to the very top levels at CFF. Certainly there are advocacy groups and no doubt there are things in the works to support CF lifestyles but there is a big disconnect. Many patients, me included, have no idea what's going on.
I will investigate how to express our needs on my end. There is no doubt CFF is listening. I know that for a fact. We just need to craft our message in a way that makes the best impact. Individual stories are so impactful. Perhaps that should be considered. Video stories are extremely impactful. But it depends to whom we deliver. We could create a YouTube channel, for example. The caveat is that some are understandably private about their struggles. Can we have a pole on FB about it? We have a substantial rally cry. We just need to coordinate delivery and message, then leverage it accordingly.
Ultimately it's up to us. All patients/families. We all need to come together on this. I cannot phantom why any patient should deteriorate and even die, waiting for assistance because of current requirements imposed. It infuriates me. CFF has worked so hard to bring us along into adulthood, only for us to falter because of a complete lack of understanding of the disease by those who literally can decide our fate. Only CFF has the power to lobby for legislation. And perhaps we could coordinate a grassroots campaign to compliment CFF's effort.
Anyway, thank you for this Autumn. I will get busy. If you and others can test the water and gather ideas, that would be awesome. I will let you know what I find out. Gosh, you really made my day! ;-)
Randford
Wow, Randford, have you checked out the cysticfibrosis.com Facebook post about this thread? People are coming out of the woodwork. There are currently 749 likes, 162 comments, and 204 shares! Maybe you should not be discouraged. People ARE interested in this, and the vast majority are supporting your position.
I especially appreciated this comment:
Mike Amend : "As a Type 1 Diabetic for the past 37 years and the father of an 18 year old CF patient, I am surprised it is not technically a disability already. Diabetes is a disability and I can tell you that CF can be far more debilitating than diabetes. You can thrive with both diseases, but it is impossible to thrive with CF unless you put in hours of daily therapy and submit yourself to weeks of being in the hospital. Do not look at the word, disabled, and believe that it will hold you back. It will not. However, the label will provide much needed protection. There is no question in my mind that CF patients should be covered under a protective status. Not because of what they cannot do, but so that they are enabled to contribute to society AND stay healthy."
Not sure if Mike is a member here, but well said Mike! Amen.
I think you are on the right track Randford, it's just that many people (myself included) need to be told exactly how to help. We need a more concerted approach. Do we say that everyone who thinks this is an issue writes a letter to the CFF? The CFF and their state representatives? The SSA? Maybe a sample letter that people could alter to fit their own personal situation? If we came up with EXACTLY what to do and when to do it to make this an organized effort perhaps more people would participate and gives a better chance for the masses to be heard. What about a national news outlet doing a story about the expense of our meds, the time we spend doing treatments, the time spent on IVs/in the hospital etc. I think the average person knows NOTHING of how expensive it is to have cystic fibrosis. I've honestly had people say things to me like "but you have insurance, right?", insinuating that I can't be paying that much for my care. HA!! If they followed just ONE CF patient around for a few days/weeks I think everyone would be shocked.
Anyway, that's my 2 cents.
Autumn 34 w/CF
Autumn and Ethan, I also agree with a letter to congress as well as mobilizing CFF and the CF community. I'm on the fence about "Compassionate Allowance". I agree that we all want to work and don't want an automatic hand out. But should less fortunate CF patients be denied? Wouldn't it simply be an individual choice if CF is declared a disability? Use it if you need it because it's there when you need it? I dunno. Yes there could be abuse but the benefits to all patients certainly outweigh that, I think.
I just can't get past Mike Amends post. Diabetes is in fact a disability. I would venture to guess that the daily management of CF is far greater than diabetes but Mike is certainly our expert on this. I really think CF should be on equal footing with diabetes on this one.
Ultimately it's about protection. A safety net. I just wonder where CFF is on the debate with SSA. If the SSA has been in deliberations and is expected to return a final decision this year, I wonder whether we're too late to add our two cents? We need to find out. I'll will look into it as well.
Randford
I just can't get past Mike Amends post. Diabetes is in fact a disability. I would venture to guess that the daily management of CF is far greater than diabetes but Mike is certainly our expert on this. I really think CF should be on equal footing with diabetes on this one.
Ultimately it's about protection. A safety net. I just wonder where CFF is on the debate with SSA. If the SSA has been in deliberations and is expected to return a final decision this year, I wonder whether we're too late to add our two cents? We need to find out. I'll will look into it as well.
Randford