Wegener's and disability

[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.

[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.