Should Cystic Fibrosis be declared a disability?

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randford

New member
Should CF Patients and CF Families push for a lobby and petition for the declaration of disability for all CF patients? Given that 50% of all CF patients are 18 and older, coupled with the challenges of affordability, insurability and even employability, it's worth serious consideration. We can make a difference with a collective voice to the foundation. And it starts here.

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Due to the great response to this post, if you have a Facebook account, please let us know your story on FB. CysticFibrosis.com has been gracious and posted this thread on FB. I've sent this FB link to CFF. Please do the same. Send to ideas@cff.org. Let your voices and stories be heard! https://www.facebook.com/knowcf/posts/10153145784473777

Never feel like we as patients and families can't make a difference. Collectively, we can! Make your voice heard! Call your local office. Contact your representative (state and federal). Contact CFF. As CF patients survive longer, this most certainly continues to be a very important issue. And one we should not ignore.
 
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Aboveallislove

Super Moderator
I understand the legitimate concerns, but IMNSHO, the better thing to do would be to lobby for "special health services" for adults (not just children), with chronic illness. Many with CF aren't "disabled", but the medical expenses are the issue....so address the real issue. Check out MI for an example of a good coverage.
 
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randford

New member
The label "disabled" is a very good point and certainly not meant as a pejorative. Semantics, perhaps with respect to the government. It could be successfully argued that given a public environment of exposure, CF patients can get sick and the cause and effect can lead to debilitation. No doubt. Not all CF patients can function consistently in a public environment without issues. That definition alone is a disability. But yes, affordability is really key here. So that all CF patients can be protect, if they so choose. However, I understand your meaning and yes, we should lobby for "special health services" as well. Whatever works!

Aboveallislove said:
I understand the legitimate concerns, but IMNSHO, the better thing to do would be to lobby for "special health services" for adults (not just children), with chronic illness. Many with CF aren't "disabled", but the medical expenses are the issue....so address the real issue. Check out MI for an example of a good coverage.
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GoryLori

Guest
I would say that as an adult with CF, I am NOW considered Disabled, where when I was in my 20 & 30s, I would NOT have considered myself disabled. SO generally, the idea was put out there but I am hesitant to say YES...label CF as a Disability. Moat young kids with CF do not grow up "disabled" and have a good quality of life despite CF. Not all, but most. So to brand those dong well people as Disabled marginalizes them to receive "special services" and be pegged as someone needing or requiring accommodations in school or elsewhere. This is a HUGE stigma to put on a tween who is trying so hard to fit in with the in crowd. They don't want friends to Google CF and read it's a Disability.....they want their peers to think they are normal. IF you meet the govt guidelines for being Disabled, then use that as a tool to decide for each person, but to blanket al CFers as being disabled would be a disservice to those who are not sickly and ARE maintaining health and doing well. Tomorrow I turn 51, and yes, I would say I am disabled from CF now, but not 20 years ago when I was younger, healthier and working full time 44 hours a week. Just my thoughts....
 
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jshet

New member
I think that it should be looked at a case by case decision. I have a son with cf, autism, and a host of other disorders. I did just file for ssi for him, though it was more on the basis of the autism. I strongly feel in our case, (which is only our situation), had he just have the cf diagnosis, and not all of the other things going on, we would be looking at colleges or trade schools when he graduates. I am sure in our situation the cf diagnosis will help with his disability decision because it just adds to everything else he has going on. My son will not be able to attain sustainable employment which is a criteria for being approved. I know cf wise it is progressive, and will affect him more as time goes by. But I thank God we are not near that point at this time.
I so much better like the special health services idea. I can attest to all of the difficulties we had with insurance since he turned 18. If you are on Medicade, over the age of 21, you can have 6 medications allowed each month covered. Above and beyond that, you need a letter from your doctor(s), and hope they will be approved. He is on 11, so I will have to stay on top of it because it has to be done annually. That would be a nice thing to see some improvement in.
 
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Tisha

New member
Oh, so it's not considered a disability in the States? In Spain it's been so for many years, and my mom has fought that people would consider us "less valuable" (dis-abled). It carries a special status but we don't get any financial aids by it, just some very minor tax discounts and free public swimming pools.
In Sweden it is considered a disability when it comes to having some refund for extra costs carried with the disease.
 
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randford

New member
GoryLori, you make some very good points. Should CF patients be labeled and stigmatized as "disabled"? No doubt that is an issue among younger patients. Just having CF alone can be a stigma among children and adolescents so having the added stigma of "disabled" certainly doesn't help. However, as we age with increasing burdens from expenses, along with employment issues, etc., it seems that adults have a tougher go of it. Adding a decline in health and it adds up. "Disabled" is a tough label to all of us who want to be perceived as normal. And we are normal, relatively speaking. All humans have some genetic issue waiting to express for a variety of reasons. We just know what ails us! And yes, a lot of us fake it, lie about it, etc...to maintain employment. Trust that being 51, employed with CF, you are one of the fortunate few. Of course I'm not suggesting you're dishonest. Just that many CF'rs have to be to protect themselves. People are naïve if they don't think that inquiring employees/human resources aren't snooping around for answers. They can and will find out. HIPPA or not.

Perhaps the answer is not a blanked declaration of disability but perhaps a modification or easing of requirements to help those need, get the assistance they need as they age. Ultimately, affordability of medication and treatment is our biggest battle. Great points. Thanks.


GoryLori said:
I would say that as an adult with CF, I am NOW considered Disabled, where when I was in my 20 & 30s, I would NOT have considered myself disabled. SO generally, the idea was put out there but I am hesitant to say YES...label CF as a Disability. Moat young kids with CF do not grow up "disabled" and have a good quality of life despite CF. Not all, but most. So to brand those dong well people as Disabled marginalizes them to receive "special services" and be pegged as someone needing or requiring accommodations in school or elsewhere. This is a HUGE stigma to put on a tween who is trying so hard to fit in with the in crowd. They don't want friends to Google CF and read it's a Disability.....they want their peers to think they are normal. IF you meet the govt guidelines for being Disabled, then use that as a tool to decide for each person, but to blanket al CFers as being disabled would be a disservice to those who are not sickly and ARE maintaining health and doing well. Tomorrow I turn 51, and yes, I would say I am disabled from CF now, but not 20 years ago when I was younger, healthier and working full time 44 hours a week. Just my thoughts....
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randford

New member
Great point. Tell us more about the "special health services" idea. How does that work? Thanks.

jshet said:
I think that it should be looked at a case by case decision. I have a son with cf, autism, and a host of other disorders. I did just file for ssi for him, though it was more on the basis of the autism. I strongly feel in our case, (which is only our situation), had he just have the cf diagnosis, and not all of the other things going on, we would be looking at colleges or trade schools when he graduates. I am sure in our situation the cf diagnosis will help with his disability decision because it just adds to everything else he has going on. My son will not be able to attain sustainable employment which is a criteria for being approved. I know cf wise it is progressive, and will affect him more as time goes by. But I thank God we are not near that point at this time.
I so much better like the special health services idea. I can attest to all of the difficulties we had with insurance since he turned 18. If you are on Medicade, over the age of 21, you can have 6 medications allowed each month covered. Above and beyond that, you need a letter from your doctor(s), and hope they will be approved. He is on 11, so I will have to stay on top of it because it has to be done annually. That would be a nice thing to see some improvement in.
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randford

New member
In the states, CF is not considered a disability by default but many patients, who meet the definition can apply for it. Problem is, you have to practically see a tunnel of white light as you flat-line just to qualify. Okay, I'm being sarcastic but the requirements are way too stringent. We need legislation to help ease those requirements/restrictions.

Tisha said:
Oh, so it's not considered a disability in the States? In Spain it's been so for many years, and my mom has fought that people would consider us "less valuable" (dis-abled). It carries a special status but we don't get any financial aids by it, just some very minor tax discounts and free public swimming pools.
In Sweden it is considered a disability when it comes to having some refund for extra costs carried with the disease.
Click to expand...
 
R

randford

New member
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Jeana_Lynn

Guest
I am not sure why it is such a stigma to be labeled as disabled. Even though I was not disabled or considered disabled as an elementary student, other students certainly knew that I was different. Now at 38 when I actually am disabled, it seems that we have to fight for everything. There are definitely kids in elementary school with cystic fibrosis that are disabled. Why does each person have to fight individually? Getting a label of disabled will allow you to get the help you need if you need it. When I was in college, I took the label of disabled just in case I encountered a situation where I needed the help. No who ever knew I was labeled disabled, but when my absences exceeded the allowed number for my English class, I was excused without needing to go before a board. This label is in place to help you should you need it, not to hurt you. Just my experience with it.
 
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randford

New member
Jeana_Lynn, I agree. You make an excellent point. It's all semantics. What sigma? As though people would know. It's not like a scarlet letter. A label is what you make it. And the point some people miss is that "CF", itself is a label. You are so right, the label of disability allows you to get the help when you need it.

The disability issue has everything to do with protecting adult patients so they may get proper treatments and survive life, beyond the disease. And if we don't qualify because requirements are to stringent, just go out right now and try to get a job. Even if we get hired, we risk exposure, leading to illness, as well as employers/employees eventually figuring out that we have a problem. So what do we do as adult CF patients? What kind of life can we build when we have to hide our illness, for fear of discovery in this environment of confusion, suspicion and discrimination in the work place? What employer wants us, once discovered? How many CF adults out there don't have a strong support system of family, friends, social media, etc? Who can they turn to when all is lost? PARC? Sure but they can only do so much. Should we become destitute on welfare and Medicade or sick enough to qualify for SSDI? Is that what the cure is all about? To be treated for CF as a child, only to be forgotten and cast aside as adults? Do we not have value? Do we even matter? If a cure and treatment is to survive CF, then what's the point when there is no quality of life? And what happens when we can't afford the very thing that can save our lives? When you look at it that way, "disability" doesn't sound like such a bad label at all. But I digress.


Jeana_Lynn said:
I am not sure why it is such a stigma to be labeled as disabled. Even though I was not disabled or considered disabled as an elementary student, other students certainly knew that I was different. Now at 38 when I actually am disabled, it seems that we have to fight for everything. There are definitely kids in elementary school with cystic fibrosis that are disabled. Why does each person have to fight individually? Getting a label of disabled will allow you to get the help you need if you need it. When I was in college, I took the label of disabled just in case I encountered a situation where I needed the help. No who ever knew I was labeled disabled, but when my absences exceeded the allowed number for my English class, I was excused without needing to go before a board. This label is in place to help you should you need it, not to hurt you. Just my experience with it.
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KingJames

Member
Which disability declaration in particular are you most focused upon? In school, both public and college, I was covered under Federal Law (504). In the workplace we are backed by the EEOC, and the ADA covers us there and elsewhere.

I'm simply trying to clarify the focus so I can understand it better, thanks.
 
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TheSaltyOne

Guest
I think maybe they should be stricter on the requirements for gaining disability with Cf but it definitely gets to the point of being a disability. I know some cf patients that claim disability when their lung function is at 60% and higher! In my opinion that is not necessary. I personally went to college and had a part time job all the way up until my lung function got down to 36% and I literally couldn't hold down either anymore cause I was in the hospital so much. So at that point I couldn't attend either and just walking across a parking lot to get groceries was difficult. At that point I claimed disability but otherwise I would work as much as I could just to feel productive. I know others that share the same belief.
 
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Jeana_Lynn

Guest
The percent of lung function is not the sole requirement in getting disability. I was a teacher for twelve years and my last year teaching I was hospitalized repeatedly with my lung function consistently dropping until it was 39%. I was encouraged to take a medical retirement, which I did. 3 years later, my lung function during good times is 55%, but I can not return to teaching because of multiple hospitalizations every year particularly during the fall, winter and spring. So, if someone were to look at my best three months (summer) and highest fev1, they may decide that I can teach, but that is not the case. I would hate to make a judgement on someone based solely on fev1. I know it is easy to make snap judgements without seeing the whole picture.
 
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believingjesus

Banned
Dear TheSaltyOne: I don't believe anyone on here is trying to "milk" the system. Most people DO want to work and be productive. In my opinion you should have been on disability way before you got to 36% lung function so you could concentrate on doing everything to stay healthy. Most people with CF have so much more to do than a person without CF just on a daily basis to stay healthy. When the doctor prescribes even more treatments to do daily then a person who works full-time can no longer keep up with their health and should qualify for disability even if their lung function is 65%. I don't have CF and I can not imagine what it would be like to have 65%. I know in the CF world that is very good lung function but a person with that lung function should more than qualify for disability and the insurance (Medicaid) that comes with it. When people with CF are hospitalized that is all in addition to all the treatments they have to do daily. There is no way a person can keep a full-time job and keep up with their health as they get older and encounter more problems. Yes, maybe part-time would work but most people can not pay their bills on a part-time job.

Also when a person is working full-time and are on the employer's insurance policy they ARE subject to discrimination as my husbands work is always trying to get everyone to keep insurance costs down so I know it matters. A person with CF should not have to worry about using the insurance. I believe everyone with CF should automatically qualify for Medicaid as the cost to keep someone healthy with CF is tremendous and I'm talking about when they are in good health. When someone has to be hospitalized for weeks at a time and they only have sick-leave days to cover one week, how does that work? Most people have to disclose to their employer why they are gone, which leads to discrimination. I have read many a person on here that has been discriminated against from their employer because of CF. I expect this to increase with the cost of Kalydeco. And, by the way, my sons lung function is no where near us even trying to claim disability right now and he IS working full-time. Him getting disability is not an issue for us at the current time but I can put myself in another persons shoes and see their life. I don't understand why some people can't.
 
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randford

New member
I'm speaking specifically about SSDI. The requirements are way too strict. It's more about disability insurance. Given the expenses of medications, treatments, etc, as well as the difficulties finding gainful employment, it's worth consideration that the SSDI requirements should be revised.

KingJames said:
Which disability declaration in particular are you most focused upon? In school, both public and college, I was covered under Federal Law (504). In the workplace we are backed by the EEOC, and the ADA covers us there and elsewhere.

I'm simply trying to clarify the focus so I can understand it better, thanks.
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R

randford

New member
I don't get your logic. You want stricter requirements on SSDI? If damage is irreversible, wouldn't it be prudent to approach SSDI sooner, rather than later? No doubt CF patients want to work and don't want a hand out. We want a hand up. What if you can't keep a job? What if you lose your insurance? Should you become sick enough and destitute enough to qualify? I guess everyone is different. It's not that people should be declared disabled but perhaps would have the ability to qualify, should the need arise.

TheSaltyOne said:
I think maybe they should be stricter on the requirements for gaining disability with Cf but it definitely gets to the point of being a disability. I know some cf patients that claim disability when their lung function is at 60% and higher! In my opinion that is not necessary. I personally went to college and had a part time job all the way up until my lung function got down to 36% and I literally couldn't hold down either anymore cause I was in the hospital so much. So at that point I couldn't attend either and just walking across a parking lot to get groceries was difficult. At that point I claimed disability but otherwise I would work as much as I could just to feel productive. I know others that share the same belief.
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R

randford

New member
I agree with you 1000%, "Believe". As we age, we should consider continuous out of pocket expenses, should there be a significant issue. How much can PARC do, after all? So yes, we can be marginally employed, while constantly looking over our shoulders, wondering and stressing when/if our employer/employees discover we have a problem...and they CAN these days. SSDI offers that safety net, should we have significant problems as we age but the requirements should be eased so that we can be protected. How many 26+ CF adults struggle, that we don't know about? Further, the foundation could offer CF-friendly employers, should patients want to work. Discrimination happens. Several years ago, I was called on the phone and "released" from my position while at the CF clinic! For "non-CF reasons", so they said. I knew better but couldn't prove it. So with one phone call, I was done. Then what? Sue? No evidence. Go find another job? In this job market? I finally rebounded but at a cost. No CF patient is milking the system "SaltyOne". People in this country who get disability for hangnails are milking the system. CF is a degenerative and ultimately fatal illness, period. And expensive to boot...but I'm preaching to the choir. We should all look after each other. Nobody wants a handout but at some point there has to be a solution should all else fail. CF Kids are easy to deal with. You take care of them, period. But CF adults are basically on our own for the most part.

But CFF is working on solutions.


believingjesus said:
Dear TheSaltyOne: I don't believe anyone on here is trying to "milk" the system. Most people DO want to work and be productive. In my opinion you should have been on disability way before you got to 36% lung function so you could concentrate on doing everything to stay healthy. Most people with CF have so much more to do than a person without CF just on a daily basis to stay healthy. When the doctor prescribes even more treatments to do daily then a person who works full-time can no longer keep up with their health and should qualify for disability even if their lung function is 65%. I don't have CF and I can not imagine what it would be like to have 65%. I know in the CF world that is very good lung function but a person with that lung function should more than qualify for disability and the insurance (Medicaid) that comes with it. When people with CF are hospitalized that is all in addition to all the treatments they have to do daily. There is no way a person can keep a full-time job and keep up with their health as they get older and encounter more problems. Yes, maybe part-time would work but most people can not pay their bills on a part-time job.

Also when a person is working full-time and are on the employer's insurance policy they ARE subject to discrimination as my husbands work is always trying to get everyone to keep insurance costs down so I know it matters. A person with CF should not have to worry about using the insurance. I believe everyone with CF should automatically qualify for Medicaid as the cost to keep someone healthy with CF is tremendous and I'm talking about when they are in good health. When someone has to be hospitalized for weeks at a time and they only have sick-leave days to cover one week, how does that work? Most people have to disclose to their employer why they are gone, which leads to discrimination. I have read many a person on here that has been discriminated against from their employer because of CF. I expect this to increase with the cost of Kalydeco. And, by the way, my sons lung function is no where near us even trying to claim disability right now and he IS working full-time. Him getting disability is not an issue for us at the current time but I can put myself in another persons shoes and see their life. I don't understand why some people can't.
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