posted
How difficult is it to get disability when you are too sick to work?
I have been diagnosed with Lyme and am being treated, but in the mean time I am not able to work and my savings have disapeared.
I have health insurance, but it doesn't cover an LLMD, which I have paid for myself and is why all my savings are gone.
I am 24 and not sure what to do. My family doesn't have money to lend and my credit is too bad for me to get a loan.
Can I get disability until I am able to work again?
How do I go about this? Are any of you on disability for Lyme?
It's so hard to deal with these things when your brain doesn't want to work. Posts: 42 | From new york | Registered: Nov 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
yes, you can get disability. it is not based on a dx, unless it's something like terminal cancer, which is pretty much a shoo-in. it is based on how your symptoms impact your ability to work.
since you are young, there are different guidelines. go to www.ssa.gov and click on ssdi for more info.
i'm sure bettyg has, or will send you her newbie package which includes info on winning disability.
depending on how you are impacted by lyme you may find it worth it to hire an attorney to help you navigate the bureaucracy.
i won mine based on my cognitive problems, so for me trying to navigate all the paperwork correctly would have been a nightmare.
there is a maximum you will have to pay depending on your initial payment. many of us have several years of back pay due when we finally win.
if you win quickly you will owe less. either way, it was worth it in the long run to me.
i'm sure there will be many more along to help you navigate this maze.
good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bettyg
Unregistered
posted
tabby, please send me a PM reminding me to send you my complete newbie package. last 25-30 pages all deal with SSDI; there is hope galore as long as you have SUPPORTIVE DRS. WHO WILL COMPLETE MUCH NEEDED PAPERWORK FOR YOU!
You're in a bad situation. I was there. It is frightening, I know. I don't know where you are in treatment, but if you have chronic Lyme (basically a year or longer) then treatment and recovery will typically take 2 or 3 or more years.
I'm saying that if you can find a way to last financially, then getting it could be worthwhile to get Social Security Disability! Many here are disabled, on disability. To get you started:
1.) Do you see the top threads of this General Forum? They have red flags. The bottom thread has information about disability.
2.) Disability is hard to get. I'm sorry, really sorry. Typically it takes 1-3 years.
3.) In some states, people apply at their local Social Security office and then try to get a lawyer specializing in Social Security Disability (SSDI) to help them ... but find they can't, specifically because they already filled out the initial form on their own.
That's how it is here. (They can hire a lawyer, but must pay the fee.)
In some other states, it doesn't matter.
The lawyers fee is paid not by you, but by Social Security. Look in your yellow pages under "attornies," typically in the specialty section, behind the main section.
Social Security is not known for consistency. Or accurate statements. I'm sorry, that's reality.
4.) Do you know someone on disability and did they have a GOOD caseworker? That can make a difference, if you go it alone, with no lawyer. (You were turned down.) Explain this to the caseworker! Make an appointment with that caseworker.
Initially, tell the caseworker how ill you are, that you can't work and are disabled. Show forms from as many doctors as you can that say that you are disabled--meaning you can't work.
After awhile (some say it's 2 years, but much less for me) you get Medicare, from SSDI.
5.) If you go it alone with no lawyer or if a lawyers turn you down: It doesn't matter what you get disability for, just that you get it! Put down that you have Lyme and / coinfections, yes, but also have doctors put down as many recognizeable things as they can.
For instance, do you have fibromyalgia? That can be caused by Lyme--put that on the paperwork. Other conditions caused by your illness that are recognizeable in conventional medicine can be added to emphasize your case.
With Lyme, disabled means--and may very well form the most of your case, that you are disabled in your head! Neuroborreliosis, a BRAIN INFECTION of the Lyme pathogen. You may also have depression, etc.
Tell the caseworker--make a point of it--saying how long you have been without work and how it is tearing up your life.
IMPORTANT! If your family is truly poor, tell them that! Give them a name address and phone and invite them to call them and find out! Tell them you are really at your wits end. Tell them your credit is bad (because of Lyme?)
Did friends or family loan you money? Then don't slip up and say they "gave" you money. Call a loan a loan!
Plead your case right there at their desk! Be calm, but firm. "What will I do? I have no money. Please help me."
Doing this, I did not need to put together a "lawyers case" with lawyer talk and legal papers up the kazoo.
But I am not saying this is the best way. Lawyer or no lawyer? You decide.
Go to www.lymediseaseassociation.org, to the left menu, near the bottom and click "Social Security." Give that info to your caseworker.
6.) SSI is for those without an income or very slight. It only takes a few months. Again, ask for a caseworker you know to be a good one. SSI isn't much!
You can draw SSI until you get SSDI.
When I first went to Social Security I had been told by the state to go there and ask about SSI. The clerk in the lobby said there was no such thing such as SSI. That is outrageous!
HOWEVER, I did complain later to my SSDI caseworker very firmly that I was not allowed to fill-out an initial form for SSI, nor was I even allowed to talk with a supervisor (when I had demanded it) for a year and 4 months. It's happened to others, and they knew it. I got SSDI!
Social Security lays in shambles. I'm just telling you like it is.
7.) You ought to get state Medicaid, with SSI, if you lose your current insurance.
8.) Or if you lose your insurance you can apply for state Medicaid. States very a lot by their Medicaid rules and offers. Typically, you then CHOOSE your insurance company from a selection. Lyme patients must chose wisely!
Ask your local support group for advice as to the best Medicaid insurance in your state.
9.) Prescription hope--lots of Lyme meds if your insurance turns down meds or you have no insurance for meds ($7.00 per month, per med):
10.) Are you getting foodstamps? You can apply for emergency foodstamps from your state office, which may mean you'll get more foodstamps first, then a lower amount every month, after that.
In the state foodstamp office, look around at the forms and pamphlets or ask about other services available: Do they have a program for utilities?
11.) Are you a veteran? Some cities have housing for veterans, but the VA typically won't tell you about this. Go to the national coalition for homeless veterans and search the site thoroughly. Yes, you can often go to live in one in another state:
12.) You may send me a private message anytime. Search BettyG's newbie package, if you want her to send it, for more information!
13.) You ought to be able to get a big boxs of food periodically. These can help, but it's not everything you'll need to feed your belly, typically.
14.) Call everywhere: get out the phone book and call call call for assistance of all types, to see what's available. Free counseling for poor people? Go! Search search the white pages and yellow pages.
Stay in your apartment? What laws do you need to know about and use, if you are disabled?
What is the low income situatioj in your state. WHAT DO YOU HAVE TO DO TO GET A SOCIAL WORKER TO GET A LOW INCOME PLACE WHERE YOU CAN LIVE?
Is there a community resource booklet that's updated? Ask at the library or at Senior Citizens Centers--another good place to ask for help. I know you are young, but those Senior places are also somewhat for the disabled, as RESOURCE CENTERS!
15.) You have to fight! You have to reach out to people!
16.) Call your Congressman's local office and say, "What do people like me do when they are disabled with no income, waiting for Social Security?
If the clerk doesn't help you, ask, please, to speak with someone else because you are ill and disabled and you are desperate and you need help, please!
17.) Is there an office for free legal help for seniors? They ought to help even a young person, when they are ill and disabled and poor. Look in their office lobby for pamphlets telling about various community programs.
You have a full load. I wish you the very best. The oft repeated phrase here never grows old: ~ Hang-in there, OK? ~
Adopt a philosophy for yourself: Where there is a will there is a way and I will find it. I will find my way!
posted
Thanks so much all of you for the info and support.
lymednva - "there is a maximum you will have to pay depending on your initial payment. many of us have several years of back pay due when we finally win.
if you win quickly you will owe less. either way, it was worth it in the long run to me."
Are you refering money owed to the lawyer? Im not sure what you were saying here. But my head is foggy today...
And Daise thanks so much for all the info, it was really helpful and gave me alot to think about. And to answer your quetion, my bad credit is due to multiple hospital stays, for various things, I was not diagnosed with Lyme at the time, but they probably were connected.
Thanks again, all of you : )
Posts: 42 | From new york | Registered: Nov 2007
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posted
It's worth a try to get the ball rolling, Tabby. It may take a yr or two to qualify and by that time you may be in even more need than you currently are!
So get started! Document everything. How you feel, what drugs you're on, etc. Keep a diary.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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I was just awarded SS Disability.... I was told a number of times that it would be difficult to get....a number of times that you will be denied on your first application.
But we had no choice.....I went for it....
I applied in Novemeber 2007...and was just awarded April 2008.... I know that MANY people were absolutly shocked at this turn around....so was I . ..I was even starting to prepare my appeal.. I did not have to hire a lawyer....but I know a lot of people say to.
some advice....make sure that ALL your doctors are on board......100% ...and when you do fill out the many, many documents..... Be very specific in what your symptoms are and that the fact that there is no way of knowing what symptoms will hit you next...
also.....along with having every doctor send information.....I had my Chiropracter, Accupuncuter, pharmasist...lab..tests, hospital stays..sent in. list everything that you have...Fibro...heart, thyriod..... we even sent in an articule of Lyme Disease and what it dose to your brain.
We thought that my age would be an issue too...I'm only 43....but have had this since I was about 26... I had a lot to send in..... you may have a problem with your age...being so young...... but go for it...
you just never know...... I was either very very lucky. ...or I am sicker then I thought
good luck to you... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
tabby,
i was referring to paying an attorney. could have been my lyme brain coupled with being post-surgery yesterday and very out of it.
i personally recommend finding an attorney. in my opinion the best way to find one is to contact local support groups, these could even be those for cfs/fm, since there are so many overlapping symptoms.
these attorneys are familiar with what disabling symptoms we have and how to document them. most of the standard SS forms are not really relevant to us.
everyone is different, but my case was won by the report from neuro-psych testing, which was the first thing my attorney recommended i do. he even told me who to go to. he was excellent, and worth every penny.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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daise
Unregistered
posted
Tabby!
Oh yes. I forgot and this is important!
Your young age. What a great age! However, because you are only 24, if you win SSDI then it won't be that much as you have not worked long enough to have paid in to Social Security.
For goodness sakes, I'd go after the SSI right away and in the meantime you could file for SSDI.(For SSI, no lawyer is required.)
Once you win SSDI (thinking positively, here!) you can apply for back pay--which will be a tidy something to help pay off bills.
You might look for a social worker who will get low-income housing for you, where you pay just one-third of your income. Be sure to point out to the social worker that even if you do get SSDI it won't be much, as you are young.
Keep in mind that when you get SSDI, you can also probably collect SSI at the same time, given that SSDI will be low.
Go for it!
I didn't mean for you to have to tell me why you have poor credit. I was trying to say that you can also use the fact that your credit is bad (typical Lymie predicament) to add to your case, that Lyme has even destroyed your credit.
And indeed, it has. If it's any consolation, you are among many Lymies who are Lyme-poor. And that is not humane!
You've had multiple hospital stays and I'm so sorry.
I'm glad you found your way to getting Lyme diagnosed. The overwhelming majority of people have no idea that "chronic Lyme disease" is the name for what they have. But YOU figured it out. Yay!
You're gonna get past Lyme and you're gonna get past every hurdle, and when you do you'll find your whole, big life in front of you!
everyone is different, but my case was won by the report from neuro-psych testing, which was the first thing my attorney recommended i do. he even told me who to go to. he was excellent, and worth every penny.
Yes. Neuro-psych testing could be very important, tabby! It could show brain stuff going on!
I know the neuro stuff was a biggy for me.....and having my dr.send in an articule of what Lyme dose to the brain I think helped big time.....
having your "team" (doctors,chiro,accu,etc.) with you 100% is huge and their credibility....and also sending in medical expenses....
I was one that really didn't think it would happen....even my GP didn't think I would get it.....so you just never know.... and maybe things are changing..... I hope so for all....Lymies.... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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daise
Unregistered
posted
Also, we with disabling Chronic Lyme typically have had to wait years or decades--while we are disabled, waiting for an SSDI appeal decision or having been turned down.
That is not very often true for others who are disabled.
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