The Other Half of the Battle

[believingjesus]

How do I do that? Do I just write that to the CFF and ask? I know in my state if I asked my senators or representatives in a letter to do anything about CF and disability issues that they would throw my letter to the side. This is a Republican state. I used to be Republican but I haven't been anything for a long time. I vote though, always, but only for people who I know will be better for my son. That really is my priority. My other son does not have any health issues so I don't have to rally behind anything there. I wrote a letter to Obama before but that just got me an invite. I really don't know how to proceed. You are much smarter than me so if you come up with something, please let me know. I will sit down when I have more time to concentrate and write on the CFF website under the "ideas" like you said. I really never get on there as they make me mad and if you have read any of my posts I can get mad. Please let me know.

Kyeev: I know you have better healthcare over there. I watched a documentary one time on it. I would love to move just for the healthcare. I love my country and I know so many have died to give me freedom but at the same time I want to do whatever is best for my son. If we had a job there we would move to Canada.

Also: Static - did you find out anything? Should I just ask for a copy of our healthcare plan? It changes every year but I didn't know if that clause would be in there?

 

[jaimers]

Believingjesus you should be able to get a copy of all of your plan benefits online through your insurance company or call them and ask for a paper copy. If you have specific questions about your plan it's probably best to go through your plan provider to get those answered. You could also work with the social worker at your son's clinic to find out what options there are insurance wise for your son outside of employer provided options. Or it seems like from your posts that your son is an adult and working so it might be a good idea for him to manage some of this as well.

 

[believingjesus]

Thank you jaimers. I will call them tomorrow and ask if they could send me a paper copy. Would that be where I would find the disability clause? I did talk to my sons social worker a few months ago. She basically didn't say anything. I figure we have one year, actually less, to get it all figured out. Thank you for your help. I had thought of that but I didn't know where our copy of the plan was. I didn't know if they would provide another.

 

[triples15]

Thank you jaimers. I will call them tomorrow and ask if they could send me a paper copy. Would that be where I would find the disability clause? I did talk to my sons social worker a few months ago. She basically didn't say anything. She said she didn't know what the options would be where my son lives and didn't even know the options in Kansas (we drive to Omaha, NE for appts.). I figure we have one year, actually less, to get it all figured out. Thank you for your help. I had thought of that but I didn't know where our copy of the plan was. I didn't know if they would provide another.

Hi again Believing!

Just wanted to say that I went to clinic in Omaha from birth until a few months ago. I'm sorry that Laura was of no help to you regarding the insurance issue. I wonder if a clinic SW in Kansas would know more regarding things specific to Kansas? Although not sure they could talk to you with your son not being a patient there. Just a thought.

Good luck, and keep fighting the good fight!

Autumn

 

[believingjesus]

Static: I really would like you or anyone out there to tell me about the disability clause. I called our insurance and they said he could remain on our insurance till the maximum age of 26 (which I already knew) and that through the health insurance if he became a handicapped person with a disability any time in the future, 10 years from now or whenever he said and we still had this insurance that he could come back on the policy. But we would not need him to come back on the policy if he was disabled because he would have insurance through medicare or Medicaid (?). I really would like to know what it is that you are talking about. Thank you so much!

Dumb question but I'm assuming you have to be disabled to be on that? I didn't know if someone could stay on there because CF is disabling at some point. Right now my sons pft's are over 100.

 

[randford]

Static, yes... we need a strong social network facilitating all of the needs of the CF community (education,employment, disability). We need to determine where CFF is on all this and how we can gather all CFF adults in this community to address this issues. CFF has the power and infrastructure to make this happen. Call your local state offices for starters. Find out where they are on this. No doubt it resonates with us all but it's incumbent among us tall o power through this.

As far as insurance is concerned, I am one of the lucky ones. My parents have good health coverage through their work and I am covered under their plan due to a permanent disability clause that needs to be filled out every 3 years. If I remember correctly, anyone with CF can qualify but I will leave it up to others to explain it further, otherwise I can probably find out tomorrow if enough people are interested.

I totally understand as far as employment is concerned though. I went through DoR a few years ago to land the job I have now and I really love it. I work part time at a mental health agency and the feeling of helping others through their struggles has really given me purpose to continue fighting mine. However, it isn't easy for either side, employers or employee. The employer has to look out for what is best for the company/non-profit/whatever and no matter how you slice it, having someone with CF on the team is more challenging than someone "normal". It requires more accommodations, more work flexibility, and at times even more staffing to make up for when you are out. Despite excellent direct support, I've heard co-workers and even bosses ask why I was still employed after being out for 2-3 week hospital stays.
In my case, if they really wanted to let me go it wouldn't be that hard. I, like many people, am "Employed at Will", which means employers don't have to give you a reason to let you go. Due to the sacrifices they are making employing me I have to make some sacrifices as well, one of which is using my PTO for hospital stays and only working part time (although to be fair I've never asked for, or even wanted full time because I don't think I could handle it and stay healthy). My monthly income is also only slightly above what people get on disability, but I still do it, and enjoy it.

Why? For me it goes back to purpose. I want to actually be fighting for something, not just to stay alive. In that sense, I can definitely relate to the original poster. I do however strongly disagree with the judgmental tone towards those who are forced into disability. Having CF doesn't automatically make you an expert on what qualifies to be "social pariahs" and what doesn't, CF is a very complicated disease and can take varying tolls on both the physical and mental state. Doing treatments for 8 hours could be their full time job, and while I understand the context of insurance discussion it was meant to be taken in, it can still be very hurtful to those who are on disability. It is also important to realize that money comes with stipulations, so while "healthy" CF'ers have to worry about employment/insurance/exc., those on disability have to worry about not going over their income/spending limit and basically living at poverty level for the rest of their life.

Edit: After re-reading your post I better understand the point you were trying to make. A strong social network facilitating all of the needs of the CF community (education,employment, disability) would be a great addition to the foundation, but until that happens maybe posting resources available to us right now will be a good start?

 

[donin]

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.

 

[static]

Understood. As a Mental Health worker I get really defensive when it comes to people on disability. When I hear words such as "leach", "pariah", "burden on society", exc. usually it comes from people who are uneducated on what exactly it is that people go through in their daily lives to warrant such a "free gift". I see now that you used the terminology to illustrate a point, and I do think liability may have been a better choice of words.

On that note I understand exactly what your sons/daughters/selves are going through as I've been there. For me, Department of Rehab really helped. All you need is proof of disability and an idea of what you want to do and they will help pay for it. I'll use an extreme example, lets say someone wanted to be an astronaut. The client and DoR would then sit down, discuss if that career is reasonable (taking into account health, monetary cost, disease progression, exc.), then enroll you in the classes to reach that job at their cost. If you already have the skills for some job they may even hire outside job coaches to help you with resume writing, applications, and most importantly networking. Its amazing what being part of a job network can bring, and if we could do it on a national level like your proposing it would be awesome. Until then, I'd suggest DoR to anyone looking.

As far as insurance is concerned let me clarify that I am currently over the age limit of 26 but am still covered under my parents plan due to an insurance form myself, the person covered (my parent), and my doctor fill out. To the parents asking here since we have a zillion different insurance polices in the U.S I would defer to your employer about coverage for your child, in my case having CF alone regardless of lung function qualified me as "disabled" under their plan. I'll still try to find out exactly what that form is, but it might not apply in your specific situation as I live in California and my parent with coverage is part of a union and works for the county.

 

[believingjesus]

Thank you Static. I didn't know there even was a Department of Rehab! I am going to print this post out in case I ever need in so I remember.

I did call our insurance company yesterday and asked about our policy as "jaimers" suggested. The guy at our insurance company just told me that when my son turns 26 he has to go off our policy. He said if he is ever declared a handicapped disabled dependent that he could come back on our policy. I am going to call again on Monday morning and ask about what you said that just having CF qualifies you to be on your parents policy indefinitely. Maybe the person at our insurance company did not know about that so I'm going to ask. We have very good insurance right now too and I am scared when he has to change. Even with good insurance our out-of-pocket after insurance pays usually always tops $7,000 each year but that is with the whole family included but the rest of us don't really have any medical issues, at least not right now. Who knows what the future holds though so the rest of us could get medical issues also. I appreciate your advice. I will find out about it.

 

[believingjesus]

Ladybird: Does a person have to provide that they have CF when they are trying to acquire private disability insurance? I don't know if my sons work offers that. Also you mentioned if everyone signed a few online petitions a year we could make a difference. Do you know of any online petitions now or coming up and how do we know of those and how do we sign them?

 

[Dank]

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.

Great post Randford.
One (slightly tongue in cheek) solution is to leave the Good Ol' USA.
We are very lucky over here in Europe to be able to work and have all our healthcare covered by the state.
Reading your post, really makes me appreciate how lucky we are over here.

I've had a 20 year career in the Sciences and it just wouldn't have been possible if I lived in the US.
In fact I've travelled all over the world and the the USA is one of the few countries I haven't worked in, specifically because of the healthcare situation.

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.

 

[pjeliza]

I am confused by this post. Both my brother and I have CF. We qualify for SSD because of the disease not because of how we are "feeling". Also before I applied for SSD, I worked for a number of years in my twenties at various companies and was not discriminated for having CF as it is against the law to do so.

I waited to apply for SSD until I felt I could no longer work full time and maintain my health. I now work part time while receiving SSD. As long as I stay under a certain gross income, I may do this indefinitely.

 

[pjeliza]

I should also mention that once receiving SSD, I qualified for Medicare. But as it only covers 80% of medical care costs, I then enrolled in a pre-65 Medicare plan that covers the rest for $245 a month.

 

[believingjesus]

What I personally have been referring too is when a person with CF is not declared disabled and all the problems with insurance and discrimination that come along with that. A person with CF can not get on disability just for having CF.

 

[ladybird]

Hi believingjesus

As you may know, Republicans are trying to gut disability payments through a sneaky move - refusing to allocate funds to the disability account. I just did a post on this. I will soon be starting a petition on moveon.org or a similar website, if one does not already exist. If you want to help protect the disabled from such cuts please vote democratic or Green party. Republicans don't care about the disabled or average families. They want to gut our already modest social programs so they can fund tax cuts for the wealthy.

Don't take SS for granted. Social security programs were created by lawmakers and can be taken away by lawmakers, I.e. the incumbent Republicans.

 

[believingjesus]

Okay I just got on and haven't read that yet. When u get that site started please post on here so I can sign a petition or whatever. I used to be republican but I have only been voting for those supporting obamacare as that is a priority to us. I wish we lived in Europe or Canada where this is not a major problem.

 

[static]

I am confused by this post. Both my brother and I have CF. We qualify for SSD because of the disease not because of how we are "feeling". Also before I applied for SSD, I worked for a number of years in my twenties at various companies and was not discriminated for having CF as it is against the law to do so.

I waited to apply for SSD until I felt I could no longer work full time and maintain my health. I now work part time while receiving SSD. As long as I stay under a certain gross income, I may do this indefinitely.

The contrast is between those that are sick with CF and flat out depend on SSD and those who are sick with CF but not yet at a point where they are willing to give up work (or live by the guidelines that SSD has in place, such as not being able to make over x income).

 

[believingjesus]

Jaimers: I called my insurance company again this morning. I was told the other day that if my son ever became a dependent who is handicapped disabled that he could come back on the policy. I asked what was suggested on this post if he could remain on our insurance just for the fact that he has CF. I was told that I would have to call the Human Resources Department of the company my husband works for and ask if he could possibly stay on for that reason as it was up to them. If they approve we will have to fill out a form but they said it is unlikely they will approve.

 

[randford]

That's a very interesting thing to do. I might like to investigate this. Thanks "pjeliza".

I am confused by this post. Both my brother and I have CF. We qualify for SSD because of the disease not because of how we are "feeling". Also before I applied for SSD, I worked for a number of years in my twenties at various companies and was not discriminated for having CF as it is against the law to do so.

I waited to apply for SSD until I felt I could no longer work full time and maintain my health. I now work part time while receiving SSD. As long as I stay under a certain gross income, I may do this indefinitely.

 

[believingjesus]

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.