The Other Half of the Battle

[randford]

Hence why we should all lobby for the declaration that Cystic Fibrosis is in fact a disability in every since of the word. That opens the door for many patients to receive much needed assistance.

Am I wrong but I thought nobody could qualify for SSD unless they were declared disabled?, not just until they feel they can no longer maintain their health and work full-time too? We are not even thinking of that at this point but I would like to know just in case for someday - as everyone with CF would probably like to know.

 

[Aboveallislove]

IMO the most appropriate handling is the state special health programs that provide coverage for those with certain diseases such as cystic fibrosis or hemophilia. States differ on how they handle but some have no age limits, no income max, no require,ent for disability, some pay copays, etc. that would be the best lobbying efforts in my view and could pull together those wth similar burdens...chronic expensive lifelong diseases.

 

[believingjesus]

Okay, I am not familiar with any programs in my state that are for special needs except ones for children. We qualified years ago for 2 years only, I think in 1994 and 1995. I'm pretty sure there aren't any for adults with CF. I see there is another thread started for solutions - thanks so much Randford - but I will have to look at that later this evening. I have to get errands run tonight as I'm leaving to see my son Thursday. So happy!!! We have fun!

 

[randford]

You make a good point. It should also be noted that CFF is working more toward address things on a state level, given the wide differences between states on requirements and access to assistance.

IMO the most appropriate handling is the state special health programs that provide coverage for those with certain diseases such as cystic fibrosis or hemophilia. States differ on how they handle but some have no age limits, no income max, no require,ent for disability, some pay copays, etc. that would be the best lobbying efforts in my view and could pull together those wth similar burdens...chronic expensive lifelong diseases.

 

[randford]

Hence why we should push for a declaration of disability for all CF patients, if they so choose. Many of us don't want to be labeled with words like "disable" but that's just semantics and really not the point. Ultimately its about protecting CF adults as they age while finding great difficulty navigating employment discrimination, medication affordability, treatments, etc.

Am I wrong but I thought nobody could qualify for SSD unless they were declared disabled?, not just until they feel they can no longer maintain their health and work full-time too? We are not even thinking of that at this point but I would like to know just in case for someday - as everyone with CF would probably like to know.

 

[randford]

donin, what a powerful story. And what a terrible thing to wish but given the circumstances with your insurance, it was the right time. But there really is no right time or no darned good reason for any CF patients to get sick to survive. That's just terrible for any parent to be in such a position. I do hope you share your story with the foundation. They really do need to hear that. And I think your story clearly demonstrates a need to protect all CF patients, especially 26 and older.

I do wish your son better health in the interim, until a donor can be found. You're right. The richest country in the world and we have to beg to survive. We have to keep speaking out, in hopes that CFF and others are listening.

Randford - you are so right! My son turned 26 in September. I worried endlessly over the past 6 years thinking, "If he's going to be disabled at 27 it would be better to just happen at 25 so that he can remain a disabled dependent on my insurance." He had been working full time since graduating college and in May he had a dramatic decline and is now on Social Security and is retained on my very excellent health insurance. It was an awful thing to nearly 'wish' him sicker sooner, but every day we know that we are lucky. Had he gotten so sick just 6 months later he would have been off of my insurance forever. Now we are desperately trying to get him a transplant and I'm already worrying about what will happen when he's well enough to work again and has to go off of my insurance forever. Richest country in the world and here we are fearing illness and health.

 

[Beccamom]

I find all of this concerning. I only have health insurance because I get it through my husband's job. I have been discriminated against because of my CF. I currently work for a very small company on a per visit basis and they have a fired at will clause which means they do not have to give a reason. I was hired before my cough became daily. I do not know how I would pass a job interview now with my cough. I have decent lung function, but I have been on a slow consistent decline. I was raised to be a working, independent woman and I am totally dependent on my husband for health insurance and finances. I think there should be a category of long term illness disability that allows part time work and gives health insurance on a sliding scale based on family income. I do understand the other side where people, including me, feel more often non disabled try to take advantage of the system. Maybe if those that could work actually worked verses living off the government, then those who are actually ill could receive more help. I have worked in people's homes for the 11 years and less then half the disabled people were actually disabled. People with back injuries that went skiing. People who claimed they could not walk had a scooter in the living room free from the government, but could walk two miles to get to the store for cigarettes when it was snowing. I have been healthy enough to not go through the disability application, but I feel so bad for the CF patients that get denied and yet really cannot work.

 

[welshwitch]

I just wanted to chime in -- has anyone with CF gotten health insurance under the Affordable Care Act? I ask because I was under the impression that it frees us from employer-based health care. If you're unable to work full or part time, but not sick enough to qualify for disability, could this be a route one could take and still maintain affordable healthcare and a good quality of life?

 

[randford]

Donin, we have to make our voice heard. Ask questions. Call your nearest state CFF office. Call Bethesda. Email. Ask. See answers. Reach out to other CF patients and families. Get them to do the same. A collective voice is louder than a single voice.

Randford - you are so right! My son turned 26 in September. I worried endlessly over the past 6 years thinking, "If he's going to be disabled at 27 it would be better to just happen at 25 so that he can remain a disabled dependent on my insurance." He had been working full time since graduating college and in May he had a dramatic decline and is now on Social Security and is retained on my very excellent health insurance. It was an awful thing to nearly 'wish' him sicker sooner, but every day we know that we are lucky. Had he gotten so sick just 6 months later he would have been off of my insurance forever. Now we are desperately trying to get him a transplant and I'm already worrying about what will happen when he's well enough to work again and has to go off of my insurance forever. Richest country in the world and here we are fearing illness and health.

 

[randford]

Dank, You and I are in the same boat. What breaks my heart is that you are only 26. There should be an employment resource for all CF adults, who do not qualify for disability, to reach out for employment opportunities. The subject as been mentioned to CFF on a variety of fronts and they are working on things but collectively we must let our voices be heard. Your voice specifically should be heard.

In addition, we should all lobby and petition for the declaration of disability for all CF patients, given that 50% of all CF patients are 18 and older are burdened with the challenges of affordability, insurability and employability. It's worth serious consideration. Or at the very least an ease of restrictions on SSDI qualifications. Given that you are 26, you are a voice that really needs to be heard. You are the template, the example of what needs to be done. We can make a difference with a collective voice to the foundation. And it starts here. Get other adult patients and families involved. Let CFF know what you think. Call your local chapter. Call your state/federal representatives.

Local: (301) 951-4422
Toll free: (800) FIGHT CF (344-4823)
publicpolicy@cff.org
ideas@cff.org
info@cff.org

Your local chapter:
http://www.cff.org/aboutCFFoundation.../FindAChapter/

First, great post. I've been struggling with this life balance for quite some time now (my entire life), and have not found an adequate solution. I seem to be healthy enough about 90% of the time, so I just push forward. I know there will be a day when I cannot. I find all of your points well thought out and the potential solution adequate. If there was a way to have resources of jobs, or an easy way to find employers who want to hire CF people indiscriminately - and more selectively, I think it would be beneficial to all. The workforce is such a tough job to attempt to fix though. Its the mentality of companies who use "lesser" employees like pawns till they are all used up and then hire some more that will kill this plan. Companies aren't looking for that person to work there till retirement. They are basically just looking for someone to come in, work till they can't anymore, and then leave and find something else. It's a daily struggle for me to find something to build upon with my current knowledge in an attempt to make my life easier later. I've been kicking around a lot of business ideas just in an attempt to find something flexible and sustainable. I have not gotten far, but have had a ton of conversations. If you have any concrete ideas of how to fix this problem of providing flexible employment, please let me know and I will attempt to provide expertise and help in anyway I can. I'm here with you in this struggle.



I have been considering moving out of this country for quite some time now. I have concerns about moving out of country but have thought long and hard about the healthcare and how I may be in a better or worse situation. It's a shame you can't just try it out first .

I want to live in a place where I can learn, grow, and thrive in every way. I do not feel like the several places I have lived in America provide me with that. Mainly because of the mindset behind corporate America and the workforce. You are meant to work 5 days a week. You have to work 8 hours a day. This does not really have flexibility to account for the sickness that will overcome my life for weeks at a time. Or the flexibility to be able to attempt to workout or do treatments during the day.

The issue at hand is very relevant to me. I ignore my health more than anything because at the end of the day, regardless of what I do, I need to pay bills. I need to goto work. I need to make clients happy. It doesn't matter that I have a fever, or if I'm struggling with my lungs or desperately need that extra few hours of sleep today. It matters that I'm in a place where I can work to support myself. I don't know if it'll get better either.

 

[randford]

Beccamom, what a great post. I agree. No CF patient wants a handout but many need help. Look at your situation. You work hard and simply want an opportunity without fear of losing your job. And yes, there are people who take advantage of the system. Nowadays, people get disability for a hangnail but many CF adults who desperately need assistance are denied. This has to change. Please share your story with CFF. It's powerful and they need to hear your voice. We need changes to protect all CF patients who need help now and those of us who will eventually need help. Thank you for sharing and get more CF patients and families involved. Please share this contact list. Let their voices be heard.

Local: (301) 951-4422
Toll free: (800) FIGHT CF (344-4823)

publicpolicy@cff.org
ideas@cff.org
info@cff.org

Your local chapter:
http://www.cff.org/aboutCFFoundation.../FindAChapter/

I find all of this concerning. I only have health insurance because I get it through my husband's job. I have been discriminated against because of my CF. I currently work for a very small company on a per visit basis and they have a fired at will clause which means they do not have to give a reason. I was hired before my cough became daily. I do not know how I would pass a job interview now with my cough. I have decent lung function, but I have been on a slow consistent decline. I was raised to be a working, independent woman and I am totally dependent on my husband for health insurance and finances. I think there should be a category of long term illness disability that allows part time work and gives health insurance on a sliding scale based on family income. I do understand the other side where people, including me, feel more often non disabled try to take advantage of the system. Maybe if those that could work actually worked verses living off the government, then those who are actually ill could receive more help. I have worked in people's homes for the 11 years and less then half the disabled people were actually disabled. People with back injuries that went skiing. People who claimed they could not walk had a scooter in the living room free from the government, but could walk two miles to get to the store for cigarettes when it was snowing. I have been healthy enough to not go through the disability application, but I feel so bad for the CF patients that get denied and yet really cannot work.

 

[Dank]

I will email and do what I can to help others with CF. I believe I may be in a much better place than most, but would love to do what I can so others don't have to struggle. The system here in America is run by crooks and thieves in suits unfortunately, so I don't have much hope.

 

[believingjesus]

I did email the CFF last week. They finally responded and simply stated in a long paragraph that they are doing all they can for people with CF. I really think we need to do something through petitioning for a change to the social security administration, not the CFF. I think everyone with CF and their families should come up with a petition as we are the ones truly affected by this disease and we are the ones who care the most, not the Cystic Fibrosis Foundation. I truly appreciate all you are doing Randford as I, myself, am not getting anything accomplished. I just don't even know where to start but I think it has to be a change in the Social Security Administration. I don't think anyone out there cares about people with CF who are struggling to stay healthy unless they are diagnosed as "disabled". That's why there needs to be a change. I also don't know how to ask that there be a change in my state or anyone elses for people with special healthcare needs that are adults. Society seems to care only for the children affected with special healthcare needs.

Dank (or anyone else out there 26 and up): If you don't mind me asking, what type of insurance do you have? Are you on Medicaid with you lung function so high? Do you have insurance through the marketplace? Were you somehow able to stay on your parents insurance as someone suggested to me awhile back that they were able to stay on past 26 just for the fact that they have CF? Do you have health insurance through an employer? If so, how is that going? My son has been on our insurance and with Kalydeco, which I so want for my son, being $300,000 - I know that will have a great effect on insurance costs which leads to potential discrimination. Employers know how to cover their butts and find another reason that is not discriminatory even though they are discriminating.

 

[randford]

"Believing", I was told by PARC that no matter what, your son will get Kalydeco. Now whatever that means, they can qualify. But I agree with you. There has to be a coordinated effort among patients and families to insist that changes are made. PARC has taken note of our suggestions and will share with the foundation. There is no doubt at this point that they are working on policies to make things happen but there is a disconnect between patients and the foundation. They are working to solve that as well. They've made it clear that they are all aware of the growing problem. We all should remain positive and keep our ear to the rail, so to speak.

I did email the CFF last week. They finally responded and simply stated in a long paragraph that they are doing all they can for people with CF. I really think we need to do something through petitioning for a change to the social security administration, not the CFF. I think everyone with CF and their families should come up with a petition as we are the ones truly affected by this disease and we are the ones who care the most, not the Cystic Fibrosis Foundation. I truly appreciate all you are doing Randford as I, myself, am not getting anything accomplished. I just don't even know where to start but I think it has to be a change in the Social Security Administration. I don't think anyone out there cares about people with CF who are struggling to stay healthy unless they are diagnosed as "disabled". That's why there needs to be a change. I also don't know how to ask that there be a change in my state or anyone elses for people with special healthcare needs that are adults. Society seems to care only for the children affected with special healthcare needs.

Dank (or anyone else out there 26 and up): If you don't mind me asking, what type of insurance do you have? Are you on Medicaid with you lung function so high? Do you have insurance through the marketplace? Were you somehow able to stay on your parents insurance as someone suggested to me awhile back that they were able to stay on past 26 just for the fact that they have CF? Do you have health insurance through an employer? If so, how is that going? My son has been on our insurance and with Kalydeco, which I so want for my son, being $300,000 - I know that will have a great effect on insurance costs which leads to potential discrimination. Employers know how to cover their butts and find another reason that is not discriminatory even though they are discriminating. My son will be 26 next year and we are fearing the transition of insurance.

 

[believingjesus]

Thank you Randford for asking about Kalydeco for my son. Yes, I understand as you informed me and also aboveallislove informed me that insurance can not deny Kalydeco because there is no other medicine like it. I will order it for my son when it is available. Then my son will suffer the consequences of such a high-priced medicine when he gets insurance through his employer. I am more than thankful for Kalydeco but nothing is as good as it seems as the people with CF will be the ones to suffer because of the cost. I know that such a medicine should cost a lot but $300,000 is extreme. It is not a cure, just a treatment.