Getting SSDI/Medicare

[Ayesha]

Hi everyone,

I am a regular on DU, although I don't post much in here even though I should. I live in CA, have cerebral palsy and use a wheelchair. My partner (we're a lesbian couple) has chronic fatigue syndrome and fibromyalgia and has been unable to work for the past year. We've been considering applying for disability for her but have been daunted by the concept and the inevitable appeals due to her condition being less visible. However, we're now facing a situation where we BOTH may need to apply and I'm not sure what to do. I've read the other thread but our circumstances are completely different from what was described there, and we could really use some help.

First of all, the reason that we both need to get on SSDI is for Medicare. My disability is the result of medical malpractice during my birth, so I've got a nice settlement that takes care of us pretty well. I worked part time in college and then full-time for 2 years after college, (the latter I found exhausting), and went back to grad school after I was laid off. I'm now finishing grad school and have a non-paid internship. All this time, I've been insured under my father, whose health care allows a disabled adult child to stay on the plan. However, they're now auditing his coverage and have sent him all kinds of documents including wanting him to prove that he supports me financially at least 50%, asking if I'm in school, etc. We're not sure what the "right" answer to many of the questions are, either. He and I are hoping that we can get past the financial part because my money is in both our names, but there's still the fear that I could lose my insurance. My partner has COBRA from her last job but that only lasts so long, and costs an arm and a leg.

So I guess I have the following questions:

Is it possible to get on Medicare WITHOUT SSDI, like through a buy-in program of some kind?

If I haven't worked in 5 years, can I say I became disabled 4 years ago even though I'm only applying now? (I did, not lying here.) I'm not looking for back payments, I just worry I might not have the required # of quarters worked if I say my disability started last year.

Will it look at all weird to SSA if they get two different disability applications from two people at the same address at the same time? Will they even notice?

Should we get a lawyer before applying, or wait to get denied? I'm more likely to get approved than she, (even though she's more ill than I am), because I'm in a wheelchair, but it wouldn't surprise me if we both get turned down the first time.

Can a lawyer or representative help us find doctors to document our conditions and stand up for us? I'm obvious (and easy to diagnose) but my partner has gotten virtually no help from doctors thus far and we don't even really know where to go to find one who understands. She may well even have another disorder that hasn't been diagnosed.

Any other advice would be greatly appreciated. Thanks!

[mrcheerful]

1. What you do is go apply for SS-DI, using all your medical information.

Then if your turned down talk to a lawyer and appeal the SS boards decision. Be ready for an 18 to 24 month waiting period on your appeal. No you can not buy into the medicare system. Lots of luck, since Reagan and the 2 Bush's, its hard to get put on SS-DI without jumping through the hoops.

[Gloria]

2. I actually got a lawyer before applying. I wound up doing all the

work, which was lucky, because the lawyer left town. (They didn't take the $$ when I got disability--they gave me the check).

I really believe that having the lawyer named in the application was a plus because it indicated I wasn't going to be messing around....

Search "disability" at www.about.com. I came up with many good articles including one by a former SSI employee who had great info.

[mrcheerful]

4. Thanks, even though i got on it after my first real try, my gf is having

to appeal because of her age and the fact her disc's are starting to degenerate in the neck and lower back. SS-DI said her condition wasn't that bad at this time, but she's now had a second physical therapist say that until they can get her pain levels under control theres nothing he can do to help her. We are getting as much medical evidence as we can, one of her major troubles was her ex refused to put medical coverage on her so her condition wasn't noticed until 3 years ago.

[fed-up]

8. I would love to hear more about your gf's degenerative discs and if/how

she gets coverage. I have had degenerating discs for at least the last 10-12 years (was diagnosed by Chiropractor back then). I completely understand the pain issue from pinched nerves or my neck getting out of alignment, and that seems to be a constant if I sit for long periods or lift more than my allotted 3 pounds (right now I am in the process of getting ready to sell house/ and move me and 25K books as I can't work enough to keep up with increased cost of everything). I should have applied for disability 7 years ago when I was done taking care of my mother, but was too stubborn and thought that I could support me and child and work through the pain if I was careful...

I haven't been to a chiropractor in a few years and have never had physical therapy.

I would be really like to be updated on how her case progresses with SS-DI. Thanks!

[Dogmudgeon]

3. The emotional hurdle is probably the biggest

I've been trying for two years now. I have a lot of lifelong problems (including hearing loss, very poor balance, and intractible severe pain) from several ear surgeries, and have developed intestinal problems on top of that. I also have the fibromyalgic symptoms, although that (and the high-frequency EEG spindles) seems to come with the chronic-pain territory. Plus, I have sleep disorders that are close to narcolepsy -- everything but the full-on sleep attacks. I also recently discovered that I could have easily applied for benefits as long as as the middle 1980s, but decided to push myself to work in a series of high-stress jobs instead. (I have also never been able to get a grad-school package that would get me anything other than Deep Dish Debt.)

I know what you're saying. They all say it, gay or straight -- "What a dreamboat!"

I'm "high-functioning" and stay in a pretty good mood. It's difficult for other people to tell that anything is wrong with me at all. Naturally, I've been turned down for just about everything I've applied for. In theory, I can work, and I spend a lot of time at the computer at home as it is. But in the course of an eight-hour work day, I may have to use the bathroom five or six times, have two near-sleep attacks, and spend six hours of those eight with a severe ear ache, like bad swimmer's ear, for which I take percocet. And employers just love drugged-out employees with the chronic runs and no sense of balance, no matter that they can still get their job done, often in less time than their other worker bees.

And I can't even get treatment because -- no health insurance!

Is all this starting to sound familiar?

What I've been told is to apply on my own twice or three times. (I'm starting number three.) THEN get a lawyer if necessary. It has become almost pro forma -- they reject you until you get "lawyered-up", then you get benefits.

It doesn't matter that you don't want Medicare, back payments, etc. -- you'll get what you have coming to you under the law, damn it, and no back talk!

As for your partner's FM, a lot of people do understand; the difficulty is that the insurance industry doesn't want to pay for it, and they've put a lot of effort into marginalizing people with pain-based disorders. Most physicians are shameful wimps; when their patients get a lawyer, they suddenly become emboldened to declare that fibromyalgia/CFIDS/etc. actually is an illness and affects the patient's quality-of-life.

My own biggest problem has been me. The past five years of my life have been brutal; if it hadn't been for my family, I would certainly be an homme de la rue (or a "street person", as we say in les États-Unis). My grandmother died, a process that took ten months, and I was her primary caregiver, which took more of a physical toll on me than I cared to admit. I've gone through more guilt and shame over my disability than is healthy; I've gone through more than is sane -- but that's of my own making. Still, Once Upon A Time, I was on the track to being a psychologist, and did work in clinical medicine as a tech for several years, so I can well understand that the first, and largest, struggle is dealing with being disabled and still developing one's abilities as far as is possible.

If you haven't applied even once so far, do so immediately. Most states will let you do most of it online, and the whole process took me about twenty hours. You can even apply for other benefits like food stamps and general assistance in most cases. Of course, you can get a lawyer today and start that way if you'd prefer; there may be advantages to doing so in your situation. (As for your father, he should start spending some "quality time" with his company's human-resources person, and let that person go to bat for him.) From what I understand, the harder you push, the easier it is, although that "push" is procedural -- you probably know enough to NOT be pushy with the bureaucrats themselves! They make weasel piss for salary as it is, and most people feel that it's customary to abuse them.

At this point, all I can say is, "Go for it, and good luck". You sound as though you "have it together" to a much greater degree than most disabled people, so give it a shot, and don't get discouraged. Even if you hit a few roadblocks, having a worthwhile life is the main thing, and remember that in California especially, you can't swing a dead cat without hitting at least a couple of lawyers. (Imagine if you were to swing a pickaxe! But I digress ...)

Which reminds me, as of April 1, I was eligible to apply again. Looks like I'll be hitting my state department of whatever's website again soon.

--p!

[silverojo]

6. Pigwidgeon, you don't need SS to get medical insurance!

Please read my other post on this thread...go to your local welfare office and apply for your state's version of Medicaid. You don't have to be disabled to get it, you just have to have a low income. Good luck, and blessings to everyone here who's going through Disability hell.

[Dogmudgeon]

7. Been There, Done That, Got Rejected.

In PA, the programs are bundled, it seems.

I'll be starting the process again and see how it goes. Thanks for the encouragement, though. I'll keep the group posted.

--p!

[Why Syzygy]

12. I think you should go ahead and get the laywer now.

It seems I heard they will only deny three times (didn't check references.. just something I heard). The lawyer will only take a fraction of your settlement.

[silverojo]

5. I'm not sure about CA law, but....

Most states usually have a Medicaid program for low-income people, whether they're on SSI/SSD or not (it's for healthy people, too...it's basically medical insurance). I've been on my state's medical program since 2003, but I didn't apply for SSI until a year and a half later.

Go to your local welfare office, and ask them about their state's medical program for low-income people. That would be your best bet, as they deal with cases like yours every day.

Get on your state's program ASAP, because the disability thing will drag on for years. I know my case has. (I have fibromyalgia and bipolar disorder, but what does the govt. care--they've got a war to pay for!)

[schmuls]

9. When my friend applied for SSDI, it took two years to finally

get approved (Wisconsin). He was initially rejected, but we were told that is usual. We were also told two years is about the general time everyone has to wait. For approval, you will have to get all the medical records, letters from all the doctors saying that your disability is permanent, and letters from a couple of people who will answer a questionnaire about your daily activities. You'll go through a lot of bullshit, but if you hang in there, you will get results. I hope this helps you; I know it is very general. Also, see about your other state low income insurance as the other poster suggested. And go online and do a search for "free medications". Some companies give out free meds for eligible people, and there are some companies that will do the searches for you for a fee (these will be there when you search). Good luck to you and your partner. I don't think you can legally get rejected because two in the same household are applying, and as you say, they may not even notice, everything being computerized as it is.

[williesgirl]

10. My daughter and I are both on disability from the same address. Each

case is on it's own. I'm not sure if they even care because it's so hard to get accepted regardless of anything else. It took about 2-1/2 yrs each. And you're right, they just keep denying until you finally reach the Administrative Judge level where you need a lawyer. Legal fees are TOP STOPPED (was $3,000 when I went through although I heard they were going up a little). Neither of us has an obvious disability - the kind they love where they can read x-rays etc.

The only requirement on timing that I'm aware of is that you can't file until 6 months following your date of disability. The SSA website is pretty good with details like this. It's www.ssa.gov.

If you want to email me for more private details, you may do so.

[crimson333]

11. the 6 month thing is waiting for your check

you are able to get benefits after a 6 month waiting peroid if you qualify.

you can file at anytime for disability

[Why Syzygy]

13. A friend of mine did get SSDI for fibro .

but only after two denials and he hired an attorney PLUS had a doctor on his side. One doctor had even told him as soon as he walked into the office that he did not do disability! He found an MD who also uses some alternate treatment methods and still prescribes the pain medication he needs. Without a doctor on her side, she will have next to no chance to qualify for SSDI. Google for fibro and see if any of the sites have doctor referrals. She may have to go outside her COBRA plan.

I was granted disability on my first attempt. However, I found, after the state scheduled a visit for me to see their doctor, that NONE of my previous medical records had been forwarded to the state (hospitals, doctors). I was seeing a doctor at the time and made a hasty last minute appointment to have her complete the paperwork, which I then faxed to the state guy. I had also researched on the Social Security site. They have the book online describing exactly what constitutes a "disability". I made sure the doctor was aware of which of my symptoms matched exactly with the ones SS spells out. I spoke with the state guy after he received my fax, which was on Friday afternoon, as my state doctor visit was scheduled for the next Monday! He told me immediately that I was approved, and he would get the paperwork in the mail that day. It was about 7 months before I received a check.

As for past dating, I actually became disabled in October 2001. But since the only records he had were from my treatments dated May 2003, THAT was the date they determined I was eligible. So I lost a couple years of back pay. They also do a number where the rule is you have to be disabled for five months, so the SSDI did not pay the first five months. They sent me a much reduced amount based on my state's SSI for those months. THEN, darlin, hang on, you don't get Medicare until two years AFTER your disability date. Mine just started this past November. I don't have any of the prescription plans. It is a maze and an extra expense. Medicare deducts $89 from my monthly checks for premiums. I understand there is a state plan to pay this, I just have not completed the paperwork for that yet. I'm disabled, get it? It seems very difficult to me to deal with all this crap, but I'm probably blowing it out of proportion. It is just hard to concentrate on anything any more. I miss that the most.

I don't know how they would date your disability. Did you become unable to work when you stopped working? I didn't know I was disabled. I had a breakdown, again, 5/2003 and the doctor and my therapist at the state agency I was using (no insurance) both told me I was 'disabled'. I had asked my therapist to help me work on getting myself in gear to get back to work full time. It was very disappointing to hear their prognosis. I am planning, planning, to try to work some part time, but it has been difficult, and so far unsuccessful, and I have to deal with my fear that I might not hold up and face another disappointing situation. And then there are the gaps in employment, etc. Most likely they would use medical records to determine date of disability.

I didn't know if I had enough quarters, I had only been working full time for three years. Was married and raising a family before that and working part time or off and on. But however they figure it, I did qualify. Look at their site for more info if you're up for it. The state agency had me file for both SSI and SSDI at the same time just in case I didn't have enough quarters. SSI has Medicaid, which I assume is about the same as Medicare. Your partner may qualify for SSI right away, and then go on to pursue the SSDI.

You could probably talk to some attorneys at no charge to ask them your other questions. They may indeed know of doctors who specialize in fibro, etc.

Best wishes to you both.

[hashibabba]

14. I have SSDI

I got the disability the first time I tried. I was very surprised, but I guess the length and level of the illness proved to them I was not employable.

I did have to jump through a lot of hoops and on some of the questionaires I couldn't even finish all the questions.

I didn't ask for it to be retroactive, but they gave me something like a year or year-and-a-half. Mayabe it was from the time of the actual breakdown, I don't know. I was in a fog for years, so I don't remember lots of stuff from that time period.

I'm doing better now. They still check up on me every three years or so. Everytime I get the questionaire, I'm afraid I'm going to get dropped, knowing how difficult it is to get SSDI.

I'm on five medications, but I no longer suffer from frequent migraines and severe back problems. My theory is that all these meds helped for the pain somehow. My SSDI wasn't based on the physical illnesses, but on the mental illness.

Medicare isn't the same as Medicaid, at least not in my experiences. I had to have thousands of dollars in bills in one month before I could even make a claim, so I never did it.

I had the breakdown in Oklahoma and they had a case worker who worked with me. She was a lifesaver, otherwise I wouldn't have known how to do things, or what things were available to me. I've only had to file twice to get my Medicare premiums ($89)paid for by the state.

There are pharmacy sites (like needy meds.org) who will help you get free meds if you don't have too much income coming in. Unfortunately, the pharm. companies are cutting back on those programs because so many people will now be getting Part D Medicare (I pay $16 a month for five drugs costing just short of $500.00).

I hope you all get what you need!