Wegener's and disability

[Minneapolismark]

Is anyone interested in gathering and sharing information on obtaining disability status and benefits? I've done quite a bit of research and work in this area and have established long-term disability with my private insurance company, the IRS, several creditors.

I've found a person who was an accomplished disability lawyer, became disabled with Chrone's Disease and now advocates for disabled people pro bono (for free).

I'm still losing my house etc., but I lacked the physical ability to keep it up and running anyway.

So if you have Wegener's please don't assume you can't get disability.

[Jaha]

I'm very interested in gathering information concerning disability for the future. I am presently self employed but worked prior to self employment for 25 years in various companies. My self employment has been a blessing because I can set my own hours according to how I feel. I was finally dx'ed in Sept of this year and have been struggling with alot of pain and fatigue and sometimes end up sleeping most days away.I also, would be interested in your dealings with the IRS.Thank you in advance for any thing that you can share.
Jaha

[jtausan]

I would also be interesting in the information you have gathered about disability. I currently work full time but recently asked my boss if I could take a day off per week, to rest and go to Dr's appts etc. He granted me 1/2 a day off a week. Ugh, this was just a slap in the face to me. I work monday thru friday and by the weekend Im wiped out and have a hard time getting anything done and spending quality time with my family. I have had several people suggest I go on disability but am worried about making it financially. I have a lot of medical bills (as Im sure most of us do) and don't want to lose my house. Although I realize my health is the most important thing, its just hard to give that up being 39. Do you have to be on disability forever? Can you get off and go back to work? I guess I don't know much about it. Any info would be appreciated. Thanks Mark!
Jodi

[dotbill]

I would also be interested in your information as of now I work full-time and have been in remission for years after my second bout but I'll never forget the last battle I was literally only up fpr the 8 hours I worked.
Thanks so much for the info and hopefully I'll stay in remission and never need it. :)
God Bless
Diane

[Sangye]

jtausan, Many people are only on it temporarily. Here's (http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/317/session/L3RpbWUvMTI5Mzg5NjcyNS9zaWQvOFVuNmQtaWs%3D) info on returning to work while on disability. (They've overhauled the Social Security website (http://www.socialsecurity.gov/pgm/disability.htm), and it's much easier to get info than before.)

I applied for disability when I was first diagnosed and was serious shape. I could barely stand, my lungs were still hemorrhaging, I was still packed full of leg and lung clots, and I was on oxygen. The doc who did my exam just looked at my file and said there was no point in putting me through the tests because I was too weak to pass any of them. He okayed the application and then asked if we could just sit and talk about Wegs and what it was like to be dx'ed with something like that. I've since learned how much most people struggle to qualify. I hear most applications are routinely denied, even when the person really qualifies.

Some other facts:
- It's extremely difficult to get approved if you're already working. They see you as a person who can work, even if you're struggling to do it or you can't work as much as you want.

- Disability doesn't pay for your first 5 months of disability (http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/151/session/L3RpbWUvMTI5Mzg5NjcyNS9zaWQvOFVuNmQtaWs%3D). It takes many months to get approved even if there are no obstacles. (Ex: I applied in June, with June 1 as the date of my disability. I got approved in December. They paid me November and December in one lump sum when I got approved. My case was as smooth as it gets and it took 5 months)

- The amount you get may be quite low. Self-employed really take a hit as they have a lower scale.

- You don't qualify for Medicare until you've been receiving disability benefits for 2 years. The clock starts on your approval date, not on your date of disability.

[stikker]

Wow. How do you pay all the medical bills for 2 years???

[Jack]

How does the system operate in the US? If I got Wegener's, lost my job and had no insurance who would pay for all the drugs? There must be a catch net surely?

[Psyborg]

Technically speaking you cannot be turned away from receiving care. IN the event that someone has no coverage they basically pass the cost on to the people with coverage. Not fair to either group really. It's a part of why uninsured people are thought to raise the cost of medical care here.

As a side note the hospitals and such do have to do this, but they also give people a hard time about it at times. Some hospitals are better than others.

[Sangye]

How does the system operate in the US? If I got Wegener's, lost my job and had no insurance who would pay for all the drugs? There must be a catch net surely?
No Jack, there isn't any catch net here. Millions of people have no insurance and no way to pay for medical care. We have people taking their meds every other day instead of daily to save money, or not being able to afford them at all. The number one cause of bankruptcy in the US is medical expenses. People lose their homes, their savings, everything and still can't afford insurance, doctors, procedures or drugs.

Those who are very poor qualify for state medical assistance (Medicaid), which is terrible care. Very few doctors accept it and you can wait months or years to get into a specialist. You can't use it in a different state. It doesn't cover everything. The governor of Arizona recently made a controversial decision that prevents Medicaid from paying for certain organ transplants.

[Sangye]

Technically speaking you cannot be turned away from receiving care. IN the event that someone has no coverage they basically pass the cost on to the people with coverage. Not fair to either group really. It's a part of why uninsured people are thought to raise the cost of medical care here.

As a side note the hospitals and such do have to do this, but they also give people a hard time about it at times. Some hospitals are better than others.
It's actually not true that uninsured or under-insured automatically have their bills dismissed. (I've been in both categories.) The hospital will try as hard as they can to get payment, including sending it to a collection agency. They will accept a payment plan, but often require you to make larger payments than you can afford because they require you to pay the balance off within a few months. They do have financial assistance that allows them to write-off part or all of a balance if you can demonstrate financial need, but only the extremely poor qualify easily. Others may qualify after jumping through a lot of hoops.

To make matters worse, if you have insurance the insurance company negotiates much lower prices with the provider. But if you're uninsured, you have to pay the full price. For example, your insurance might be charged $600 for an MRI but an uninsured individual will be charged $1200. Even if you make a payment arrangement, they will not lower that cost.

[Jack]

Strange how most of Western society seems to have come up with medical provision for all, but not the USA. I don't understand how it has happened in a country founded by poor immigrants.

Sorry, this is probably starting to get political now - I'll leave you to swap information between you that may help.

[renidrag]

I have to tell you I saw the title and went for the end before reading most of the posts. I filed for disability on 9-17 10 (short term) as my manager expressed to me that I should do that. My benefits ran out on 12-17. I filed for long term disability in November knowing they did not want me back at work, and knowing I can not perform as I should. I have heard nothing from the Insurance Co. since and the did not finalize all the info they needed until 12-28. That means we will possibly be without income for at least two months. How can we survive, how can anyone survive, and the most we will get out of the insurance is sixty per cent of my income. I am usually not this wordy but the anger and frustration regarding this subject, well, I can't express. Jack. as Sanye expressed, in this country there is no safety net. I will leave it there as I could really get political. I have had no dealings with the IRS to this point. We have saved all medical expenses (out of pocket) to claim on our income taxes and yet with the reduced or no income, it costs me $228.00 per month to keep my private health insurance. I could go on for a while, but at this point should probably take another xanex.

[Sangye]

Dale, I'm so sorry to hear that. I maintained my private health insurance policy until last March even though I was on Medicare because if/when I can go back to work I'll lose the Medicare and won't be able to get insured. I finally had to give it up, though. My premium had increased 400% in 6 years. It was $750 a month when I canceled it-- 85% of my disability. (That was in addition to a $3,000 annual deductible.) Even if I can go back to work I can't cover that kind of expense. I have no idea what I'll do if I can work again. Man, hand me a xanax too. :angry:

[renidrag]

Xanex to Sanye. Happy, Healthy and Remission New Year to All.
As an aside, I am an Independent voter and at this point really don't know where to go. No more politics.
I promise, til the next time. Maybe tomorrow.
Dale

[drz]

No Jack, there isn't any catch net here. Millions of people have no insurance and no way to pay for medical care. We have people taking their meds every other day instead of daily to save money, or not being able to afford them at all. The number one cause of bankruptcy in the US is medical expenses. People lose their homes, their savings, everything and still can't afford insurance, doctors, procedures or drugs.

Those who are very poor qualify for state medical assistance (Medicaid), which is terrible care. Very few doctors accept it and you can wait months or years to get into a specialist. You can't use it in a different state. It doesn't cover everything. The governor of Arizona recently made a controversial decision that prevents Medicaid from paying for certain organ transplants.

I think in my state any medical facility that takes Medicare must also take Medicaid and they pay equally, but proposed and pending cuts are making it more difficult to find vendors that will accept new patients on either. Most people in our nursing homes are on Medicaid and they receive same level of care as those who are private pay since that is our state law.

As Sangye said some states are cutting their Medicaid benefits due to financial pressures. One person who was eligible for a liver transplant in another state previously was recently told it would not be covered anymore due to cut backs at state level. His family and friends are trying to raise the money privately but 1/2 milllion dollars is hard to raise in these times. Don't know what happened or will happen in his case. Most likely some wealthy person will cover it for him but it is a bad situation. Some free drugs are available from drug vendors for PR purposes for people who can't buy them. Sometimes doctors have scripts for free drugs for these patients. Medical bills are leading cause of bankruptcy in USA which is an embarrassment for a wealthy country with a very advanced medical care system that attracts people from all over the world for medical care while many USA citizens can't get such care.

[jtausan]

Thanks Sanyge for the very valuable information!

[Minneapolismark]

If you are having trouble with a disability insurance company let me know. There is a disability lawyer who is herself disabled and will help pro bono--without cost.

I am covered be LTD, but did lose my house. On the other hand I could not keep it up anyway. By the way, the Mayo will apparently help with your disability paperwork, if you are a patient. At least that is what the handbook said.

[Psyborg]

At this point I feel extremely lucky that I don't need to go on disability. I do have a question though (on the chance I need it in the future), can you apply for SS disability while still on LTD insurance? If I ever need to do so I'd rather I did it in the best order possible.

[dunkie2202]

Dale, I'm so sorry to hear that. I maintained my private health insurance policy until last March even though I was on Medicare because if/when I can go back to work I'll lose the Medicare and won't be able to get insured. I finally had to give it up, though. My premium had increased 400% in 6 years. It was $750 a month when I canceled it-- 85% of my disability. (That was in addition to a $3,000 annual deductible.) Even if I can go back to work I can't cover that kind of expense. I have no idea what I'll do if I can work again. Man, hand me a xanax too. :angry:

OMG I never realized how much you guy's pay for medical treatment (insurance). Our health system is so totally different.
So if you pay into health insurance, do you need to pay for medicine's or any other medical treatment as well or is it all covered by the insurance?

[Sangye]

At this point I feel extremely lucky that I don't need to go on disability. I do have a question though (on the chance I need it in the future), can you apply for SS disability while still on LTD insurance? If I ever need to do so I'd rather I did it in the best order possible.
Phil, check out the FAQ on the Social Security website. I remember seeing that question.

[Sangye]

OMG I never realized how much you guy's pay for medical treatment (insurance). Our health system is so totally different.
So if you pay into health insurance, do you need to pay for medicine's or any other medical treatment as well or is it all covered by the insurance?
It depends. The policy I had was a 100% policy, meaning after I paid the $3,000 annual deductible I had 100% coverage of my docs, hospitals and drugs. There were problems with that (other than the annual "holy cow, how am I gonna find $3,000?"). They reimbursed for the drugs, so I had to pay for them out of pocket and wait for the money. That's a big deal if you don't have money. And every so often they didn't have a plan with a facility so I had to pay the leftover amount. That happened with Mayo Arizona. They paid most of the bill, but Mayo's charges were outrageous so I was left with the remainder. I couldn't have afforded to get care at Mayo to the degree that I receive it at JHU. Also, no policies cover pre-existing conditions. I was very healthy when I got the policy except for a couple of orthopedic injuries. I had to pay full price for that care and couldn't receive the care I really needed--not even close.

Most policies are 80-20, meaning the policy covers 80% of "Covered" expenses and you pay the remaining 20%. Not only is that 20% enough to sink most people with extensive bills, but they deny coverage for just about anything. And they tell you everything is a pre-existing condition. In many states even being female is considered a pre-existing condition (because you "could" get pregnant and that would cost more), and so is having been the victim of domestic violence. Across the board women are charged more for insurance policies. Many people can't even get insurance because of the pre-existing condition thing. "Un-insurable." Weggies are, for sure.

Note: the number in my post was wrong. I had been paying 85% of my disability income for insurance. In February they raised the premium to $750, which would have been 98% of my disability. That's why I canceled it. :glare:

[drz]

At this point I feel extremely lucky that I don't need to go on disability. I do have a question though (on the chance I need it in the future), can you apply for SS disability while still on LTD insurance? If I ever need to do so I'd rather I did it in the best order possible.

Many disability policies require you apply for Social Security disability in order to qualify for any benefits. Some will deduct the amount that social security paysyou from their benefits. Policies vary greatly and some companies have very bad reputation for honoring their policies. There have been some programs on 60 minutes or other TV news shows about some of these abuses by disability insurance companies, like denying benefits to a surgeon who shook so much he could not even feed himself. I paid into disabiiity insurance for years till I found out the company didn't honor its policies. They either denied benefits or stopped paying after a few years and then forced you to take a cash settlement, usually what they owed you for benefits they didn't pay. It pays to investigate your policy and company to be sure you will be able to collect if you need the benefits.

[Psyborg]

OMG I never realized how much you guy's pay for medical treatment (insurance). Our health system is so totally different.
So if you pay into health insurance, do you need to pay for medicine's or any other medical treatment as well or is it all covered by the insurance?

Depends on the insurance. For the most part we have to pay co-pays, though there may be a few "cadillac" plans still rolling around that cover everything. Probably not many anymore.

[Jack]

Although we have to pay extra taxes to pay for our NHS system in the UK it sounds like a bargain in return for getting all the treatment you need, no questions asked.

[Sangye]

Definitely. Believe me, there's no way you're paying as much in taxes as we are for paying medical expenses directly.

drz, that was great info about disability insurance. I didn't know about that mess.

[Palmyra]

Yep...the system in the US is a sad example of a wealthy country NOT spending its money directly were its citizen/taxpayers need help. OK, will not deviate into politics!!!!

Bob, we not only pay more for individual insurance premiums if we are 'sick', (my daughter's annual premiums and co-pay alone are more than her husband makes in one year,) we then pay for medical care if providers are not on the 'plan' we gambled on purchasing. If a weg specialist is not on your plan (most are not because they are out of state,) we pay for all additional fees and for 'top shelf' medications. If your insurance company decides one treatment is cheaper than another, they can refuse to pay for the recommended treatment. Bah, hum bug!

To those in the US with experience, what disability benifits might be available to someone that was diagnosed prior to establishing a work history? My daughter was diagnosed with Crohn's at 14, and Weg at 20. She has not been able to stay at a job long enough to have a social security history. We need to contact an attorney, right?

[Sangye]

Palmyra, I suggest you start by going to a local Social Security office to discuss your daughter's situation. I've found them to be pretty helpful on the few occasions I've had to do that. It's usually a pretty long wait (at least an hour) but worth it.

[drz]

Palmyra, I suggest you start by going to a local Social Security office to discuss your daughter's situation. I've found them to be pretty helpful on the few occasions I've had to do that. It's usually a pretty long wait (at least an hour) but worth it.

Another option around here would be either a county social worker or medical social worker where you receive medical care. If she has very low income and finances she might qualify for Medicaid or other assistance of some kind. Many children qualify for social security disability without having any work history.

[Minneapolismark]

My experience with disability has generally been with the Prudential corporation. They've been remarkably good to work with so far. STD was pretty straight forward, and now I am on LTD. They will most likely assist me in getting Social Security benefits because it is to their benefit that I do so. The money from Social Security will offset their payments, making me cheaper for them to support.

Statistically, the Social Security Administration will deny a claim about four times on average. However, once your claim is accepted they will back pay to the date of the initial event.

With private disability insurance, everything depends on the contractual definition of "disabled" is. There are generally two classifications of disability-- any work, and "own work." The first means that you have to show that you are unable to do any kind of work anywhere, and under any circumstances. This is pretty tough to prove. One company referred to their disability policy as a "submarine policy" because they joked that it would only pay out if you were hit by a submarine in the middle of the Sahara Desert.

The other one is "own work," which means that your disability prevents you from performing the work that you are trained to do, and for which you were employed at the time disability first occurred. So a surgeon with shaky hands can't operate. Under the Any Work definition he would have to basically prove he couldn't be a door greeter at Walmart. Under the Own Work definition he would simply have to show that he could not perform surgery.

Most modern policies have some form of hybrid definition which is Own Work for two years, and then shifts to Any Work after that. Often they will offer to train you in some new line of work.

The other thing to keep in mind is strictly about 'barriers to work.' All they care about is whether or not you can physically and mentally perform the individual tasks that make up your job. When I got sick I requested that my employer provide me with a set of ADA (Americans With Disabilities Act) definitions for my job. Although I was an executive who basically sat on my arse all day, I had to be able to drive for 2.5 hours a day, sit for 4, walk for 1.5 etc.

It was then a fairly simple matter for me to take this to my specialist and have him write me a letter that explained my inability to meet all of those criteria. Also, my job required that I essentially be available 24/7, and with Wegener's I have good days and bad days. So I might be able to do those things one day out of ten, but I have no idea which day. This makes me unable to handle the behaviors required of my position.

So, for disability, you need to show which specific behaviors required by your job are now beyond your capacity.

[Minneapolismark]

The other thing I am trying to do, for what it is worth, is to make my life as small as possible. When I first got sick I hired my sons to come in and throw away everything possible in the house, or sell it. The house was virtually empty when we were done. This was simply because I can't keep a house clean if it is full of junk. We also emptied things out of the garage.

I then decided to strategically default on my house because I was no longer physically able to keep it up, and certainly could not handle the strain of trying to sell it. So I had one last soak in the Cal Spa and moved my meager belongings to a friend's spare bedroom.

I then divided up all the good stuff left over in the house between my children. I fixed up my car a bit so that it would be reliable. I got rid of most of my beloved books and shifted everything over to the iPad book readers (Nook, Kindle, iBooks, eBook, Audible).

When I was paralyzed I used the iPad to pay bills, communicate with my medical team via text message, order groceries for delivery from Coborn's, watch Netflix, read etc. Facebook became my lifeline to my friends and family. I would have really felt isolated without it.

Now that I am able to move around more freely, I still use the kindle but sometimes spend time at the computer.

so the point of this is that you may want to consider making your life as small and manageable as possible. This too is a way to handle disability.

[Sangye]

That's great advice, Mark. I've also made my life much smaller. It would be even smaller if I didn't have my chiropractic equipment, hoping to be able to work again. I have to rent a fairly small storage space for that. Without it, everything I own would fit into one small room. I actually like that. I never like having a lot of stuff.

[Minneapolismark]

Yeah, it was very liberating. It was amazing how much junk I was hauling through life. I still have my various computers, my two flatscreen TVs, my life-size Spiderman statue, my phaser, tricorder, communicator, a few books, fishing equipment, chess set, and astronomy gear. Oh yes, and the cats. And the Bose stereo. But that is pretty much it. Not much accumulated wealth after 52 years, but that is OK.

Life is more important than stuff.

[elephant]

Stuff is just stuff and enjoying life and the time we have is more important than hunting for more stuff that we don't really need. I have given away so much stuff and still need to get rid of more. My house is not decorated that great because I don't like to buy stuff. I don't even like having a bunch of clothes/shoes, it's actually overwhelming to me. I do like the simple life.

[Sangye]

Our temple is handing out warm clothes and blankets to homeless in DC this winter. Last week I gave away the last of my clothes that don't fit anymore thanks to pred. They were the clothes I used for winter hiking, biking, snowshoeing and cross-country skiing. Even if I can use them again someday, someone is freezing and needs them right now. It was so wonderful to hear how the recipients reacted when they got my stuff.

[Minneapolismark]

The good news is that the "friend" who gave me her spare bedroom was my girlfriend and we got married.