How Sick Do I Have To Be?

[poppetkazutaka]

I'm very curious about disability. What is the process? How do you go about getting on it? How does it work? How much does it pay? How does it work if you have short\long term insurance from your employer? Do you also have to apply for Medicare?

It's really getting to the point that I just don't know if I can keep myself working. I feel like utter crap all the time and no one wants to help me. But how sick do I have to be before anyone will let me do that? Do I have to be half dead before they help? Do I need to be crippled? What doctors do I need to see? My Rhum won't help, my GP won't help. Who do I need to see?

[janiedelite]

I've been on long-term disability for several years. It is in their best interest to get their clients on SSDI because then they pay less benefit (for example, imagine you get $2,000 a month from LTD and you are awarded SSDI at a rate of $1,500 a month. Your LTD insurer would make up the $500 difference from then on.) To figure out what you'd get from SSDI, all you need are those statements they send every couple years while you are working. Or you can request one if, like me, you threw yours away. Or, you can go to the SSDI website and estimate what you'd get each month. It all depends on how long you've worked and how much you made.

The degree of disability varies with POTS/dysautonomia, but here's SSDI's definition of disability:

The definition of disability under Social Security is different than other programs. Social Security pays only for total disability. No benefits are payable for partial disability or for short-term disability.

"Disability" under Social Security is based on your inability to work. We consider you disabled under Social Security rules if:

You cannot do work that you did before;

We decide that you cannot adjust to other work because of your medical condition(s); and

Your disability has lasted or is expected to last for at least one year or to result in death.

As for me, I have some degree of symptoms and disability every day. Some days I function nearly normally and some days I have so much pain and fatigue I can hardly move. Most days are in the middle somewhere. With SSDI, you have to prove you can't do any type of full-time work.

Unfortunately, it really is helpful to have the doctors who regularly manage your illness back you up. They will have to fill out paperwork documenting your disability. If you are on LTD, your LTD insurer should file the paperwork for you (although you'll still need your doctor to document your disability on SSDI's paperwork). I was denied the first 2 times and had to have a hearing. My LTD company contracts with GenEx, which is a company that gets people on SSDI. They provided an attorney, although the attorney admitted I did all of the legwork for her. Here are some things that helped me win my SSDI:

- I kept a journal of my symptoms for nearly 2 years prior to my hearing.

- I included professional medical journal articles about POTS and disability.

- I went to Mayo for a diagnosis. Going to a well-know medical center will earn you a lot of validation with those reviewing your case.

- I've been blessed with doctors who believe me, and I do my best to comply with their suggestions, even when I'm not sure if it will work out. I always try what they suggest, sometimes it works, usually it doesn't. This helped because I had to send all my medical records for the past few years, from over a dozen doctors, and they all spoke favorably of my efforts to get better. I know this stinks because sometimes doctors make us look like malingerers. I went to one doctor like that, never went back, and all my other doctors' testimony outweighed his. I only say this because my SSDI judge remarked several times how favorably my doctors spoke of me and how that really helped my case. She said many patients applying for disability are non-compliant, don't follow up with their docs, no-show appointments, and she said this really counts against them.

- I went to over a dozen doctors because most of them didn't know what to do for me. I stuck with those who want to help me, even if they admit they're not experts.

- I documented every doctor's visit, PT visit, therapist visit, phonecall, etc. The judge commented that no one could work a full-time job and be at all these appointments.

- I included a short paper titled "A Day in My Life" and detailed how I function during a 24-hr period, why I do things differently, what helps, what hurts, etc. If you apply for SSDI on your own, include as much about your illness as possible because those people reviewing your case will only know what you tell them. The forms you have to fill out don't give a very good picture of how we actually function.

I was denied the first two times because I initially was disabled after a car accident that required two hip surgeries and 100 PT visits over 2 years. SSDI said that I should still be able to work with 3 working extremities . Also, GenEx never properly requested all of my dr's records. I ended up starting to keep a copy of all my records myself. By the time I was denied twice and assigned an attorney, I just faxed all my records and the other info I mentioned above. I won my case based on those records. I have to get reviewed again in a couple years because I'm young (36). My mom has cancer and is 61 and she has permanent disability.

You will automatically be awarded Medicare once you've met SSDI's definition of disability for 2 years. But you don't have to accept Medicare, you have to prove you have your own private insurance and they'll drop you if you want. I kept part A (inpatient), because it's free, but declined part B (testing and dr's visits).

It's tough getting disability payments because you KNOW that you're sick and not faking, but it seems like everyone wants you to prove it. Keep pushing for yourself because no one else will be your advocate for you. I felt like it was my full-time job just keeping track of my records and documenting everything. But it was worth it because my LTD will stop paying in 2012 and I'll still have my SSDI. I've heard it's much easier to renew your SSDI when your review comes up than it was to get on it in the first place. Keep fighting for yourself!

[Simmy]

Funny you should ask. I just got off the phone with my lawyer an hour ago. For the first year and a half of my illness I tried to work very limited hours and extremely light sedentary work, but couldn't continue even that. I haven't worked since January.

Most of your questions can be answered by visiting ssa.gov, but I'll try to pass on what I've recently learned. I applied online in March, crawled in for an interview a few weeks later and handed them copies of all of my medical records from the beginning, including statements from my current PotsDoc / cardiologist attesting to the fact that I cannot stand for more than 5 minutes, or even sit upright for more than 20 before excruciating headaches, dizziness and nausea occur, along with crazy heartrate spikes and blood pressure drops. I also submitted tons of other corroborating evidence, including Holter printouts, my own heartrate recordings and journals including chronology, symptoms and descriptions of daily life with this illness.

I was denied a week ago, saying I can still do my job, differently.

I just hired a disability lawyer (not one of the B&B's) who told me I did everything right, but it comes down to POTS simply not being on their list of "approved diseases." He's confident I'll be approved because many of our individual symptoms ARE on the list, like arrhythmias, tachycardia, bradycardia, hypertension and hypotension, to name a few. He's certain, if and when it gets to the point that I appear before a disability judge, that simply standing up and showing the judge my heartrate monitor jumping 30 or 40bpm will seal the deal.

The first stage is submitting the claim, which is reviewed by a pencil pusher at SS and is often denied. The second stage is a "request for reconsideration", which basically means another person in that same office who knows nothing about the first review, reviews it independently, which also usually leads to denial. The third stage is the appeal, when you get the opportunity to speak one-on-one with a judge whose job it is to hear disability cases and nothing else, with an open mind. Many are approved at this stage because for the first time you get to 'show' a human what's wrong with you. Other stages follow, including federal.

The bottom line is, you must prove that you have an illness that -

1) You've had for more than five months.

2) Is expected to last for at least one more year, or result in your death.

3) Makes it so you are unable to perform your job as reasonably required.

You must also have been employed for (I think) a minimum of ten years and have contributed at least $X in social security taxes. There are many more rules, but those are essential.

If you've worked and contributed the required amount to the system, you should be receiving a statement from social security, every three months, which lists your benefit amounts should you become disabled. But you must have at least one licensed doctor who officially diagnosed you and would be willing to fill out the needed paperwork when asked.

I hope that helps.

[janiedelite]

Simmy reminded me that, while I was approved on the basis of my POTS symptoms, I ended up getting approval under small fiber neuropathy since that's what Mayo ended up saying caused my POTS and it's on SSDI's list of approved diseases. Alas, autonomic neuropathy is not on the list as of yet.

[poppetkazutaka]

I think that's where I'm getting tripped up. No doctor here will give me an 'official' diagnosis. Only borderline this or that. Because they don't believe I'm sick enough despite the tests and readings and paperwork they've got.

[blhorn]

I received SSDI for POTS and New Daily Persistant Headache. I don't think I would have got it if I had not gone to the Mayo. All I can advise is find a doctor who will listen, go to them often, document everything, and most important if you get denied which you probably will, get a lawyer and re-apply. (You don't have to pay the lawyer they just get a portion of your back SSDI.)

I have a theory that SSDI denies everyone the first or second time just to try to make people give up.

[pat57]

http://www.disabilitysecrets.com/questions.html

check that out

[jump]

Is there anything for people who CAN work, but only part-time?

The problem I'm having now is that I can work about 15 hours a week. That totally exhausts me - I can't really do anything else beyond the very minimal (eg, I can't work 15 hours a week AND cook myself dinner AND clean my apartment AND get moderate exercise as recommended by my doc - but in a week, I might be able to work and do one of those things).

But working 15 hours a week isn't enough to really sustain myself financially. I can BARELY make it paycheck to paycheck, but only with a little help from my parents, who both just lost their jobs. I can't save anything working part-time.

I assume there's no financial help for someone like me, but I wish there was. I'm grateful that I'm not fully disabled, but I hate that I'm facing a lifetime of poverty (I live well below the poverty line) and financial anxiety, all because of an illness I can't control.

[Brye]

I was approved on the 1st attempt. I had seen 4-5 different cardiologists and none had resolved my symptoms. My diagnosis is POTS. I never saw an autonomic specialist. I had a supportive cardiologist who didn't really have any great advice on treatment options to control my fainting. I was approved based mostly I think on my high risk of syncope. It's a workers comp nightmare apparently to hire a fainter. Hope you find the answers you need. I did have a little lawyer advice prior to submitting my paper work and was definitely planning on hiring one if it was denied the 1st time. I was thankful it was approved.

Brye

[Brye]

I was approved on the 1st attempt. I had seen 4-5 different cardiologists and none had resolved my symptoms. My diagnosis is POTS. I never saw an autonomic specialist. I had a supportive cardiologist who didn't really have any great advice on treatment options to control my fainting. I was approved based mostly I think on my high risk of syncope. It's a workers comp nightmare apparently to hire a fainter. Hope you find the answers you need. I did have a little lawyer advice prior to submitting my paper work and was definitely planning on hiring one if it was denied the 1st time. I was thankful it was approved.

Brye

[comfortzone]

You can have Social Security do most if not all the work for you in getting enrolled for benefits. If you are truly housebound you can do a phone interview with Social Security ~ it is lengthy ... some over 3 hours long ~ but that's all you must do. Then they go and obtain all your medical records ~ even if they are into the hundreds of pages. You will be let known their decision by mail ~ sometimes in less than 4 months. In some cases if it's not quite a year that you've been disabled and unable to perform any work ~ they will still talk to you on the phone and if appropriate get the ball rolling for approval if they see that you will not likely be recovering before the year mark. I post this in case anyone might be helped by being helped by Social Security. Once you obtain your benefits ~ if you do improve in your health you can certainly go back to work ~ If you try your full time job or a regular substantial job you can keep your wage and SS benefit for 9 mos. ~ then you lose your benefit. However if you can only do a little bit of work ~ or what may amount to less than $1000 dollars per month ~ you may keep both your social security benefit and the wage for your "unsubstantial work". This info is on their website ~ but it can be hard to decipher when you don't feel well.