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Author Topic: Thinking of getting off SSDI????????  (Read 3683 times)

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Offline rip10199

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Thinking of getting off SSDI????????
« on: June 20, 2012, 01:36:57 PM »
hi  i will try to be brief. i have been poz for several decades and full-blown almost as long. i have worked part time almost the whole time. i have used up my trial work . i work part time making just enough to keep my benefits . i don't make much.. i have gone to school for what seems like forever . i just graduated from community collage with an associate in science in nursing.. i have taken my boards (passed) and am now an RN. i work as a nurses aid in home care part time. i am now 50 i make about 1800 a month (gross). 2 years ago i injured my back transferring a patient my back goes out a lot now (another disability very painful) . i am undetectable and have been so for a ling time. my hiv is considered chronic . my worry that working as an RN i will make too much money to cover my meds. the cutoff is 43k (i think). i will be getting an epidural for my back ( no surgery ) ive seen the results in home care no thanks!!! if i have to pay for my meds i will be making less than i am now !!! i have lived with my mother for a long time and she just passed away several months ago (horrible). having just gotten out of school with loans and everything else my bills exceed my income . i have great credit, but no savings no 401k nothing.. is it feasible or reasonable to even consider making the the plunge !!! my biggest worry is my back going out and the cost of my meds !!! i dont live in public housing and hope i never have to. has anyone else done this and if so how did they manage?

Offline emeraldize

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Re: Thinking of getting off SSDI????????
« Reply #1 on: June 20, 2012, 03:11:03 PM »
I'm sure someone will chime in here, but for me, I have some unanswered questions.

Although you don't state it specifically, your post reads as if you are contemplating moving to full-time work as an RN. Am I reading it correctly?  And, if that is correct, do you already have a job lined up ? If that is correct (because you cite the income per year) what are the benefits offered to employees? Do you know what the health care coverage is and whether medications are included, etc.?

What I would do, (if it were me with my burning desire to jump into the work force bravely and confidently) I'd get all the answers to the questions above and find some brilliant HIV positive certified public accountant/investment advisor type man or woman, who, out of the goodness of their heart and breadth of experience and bank account would look at your figures.

I'm guessing (hoping) you inherited your mother's house. Now, it's about utilities, taxes, insurance, upkeep, etc. Do you need a roommate? If you have benefits are they sufficient? If you stay in good shape and work for 10 to 15 years, could you, with strict discipline, salt away as much money as possible in a 401K and other vehicles? You're at the age where, if you have the plan available, you can be making catchup contributions.

If you make your overhead super-low, you might be able to squirrel away a nest egg that would make you and your mom proud.

You need a numbers brainiac to guide you objectively. If you can't find one for free, hmmm,  try to find one for free. Read some Suze Oreman and put as much together as you can on your own. Is $43,000 standard starting wages for an RN in your region? Can you better that?

No more questions. Promise.

While slightly over a year old, have you seen this two-page article from the NYTimes? It may give some insight. http://www.nytimes.com/2011/04/07/business/economy/07disabled.html?pagewanted=1&_r=2&ref=business

You likely already know all of this, just in case you don't...
« Last Edit: June 20, 2012, 03:41:37 PM by emeraldize »

Offline rip10199

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Re: Thinking of getting off SSDI????????
« Reply #2 on: June 20, 2012, 03:47:03 PM »
hi Em there is no house... i argued with my mother for years about it (don't i wish!! DESPERATELY WANT TO BUY ) at my sisters urging she sold it yeas ago. i was living in the big apple and just about to get sick when it happened ... bad subject!!!  and from what i can figure out the starting wage is about 46 full time ... the problem is i would loose my disability the first month !!!  as for benefits i have no clue im thinking of working at a nursing home they pay the most with the best benefits ...several of my classmates work. but of course they know nothing about benefits at their jobs (no common sense any of them) ... right now i am waiting on an OK to seek employment from my Dr... my back is a mess... just waiting on insurance company now (workers comp to give ok on procedure) Houses are cheap in some parts of the state.. (Providence).. i'm in Rhode Island ...the expensive part  think beach and Mansions!!  i want to live near where i work !!! i'm looking into it .. i will be getting a roommate once this lease is up i hope !!

Offline rip10199

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Re: Thinking of getting off SSDI????????
« Reply #3 on: June 20, 2012, 03:52:54 PM »
ps i am past the age of needing things... i live on the cheap !!! all i need is a computer and a car which i have already!!

Offline emeraldize

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Re: Thinking of getting off SSDI????????
« Reply #4 on: June 20, 2012, 03:55:00 PM »
Well...the wonders of the internet. I accidentally found a post of yours or your parallel world twin in thebody which tells me you don't have a house, but an apartment you'd like to hang onto.  and it appears, your respondent Jacques echoes some of my advice. Best of luck. Em  ( I see you posted as I was constructing this. More later. )

  i'm thinking of getting off ssdi but dont think i can
Apr 10, 2012

Hi here is the deal i have been on ssdi for at least 10 years now. I have had a full blown Aids diagnosis for about 12 years. what i have been doing for the past 7 years is going to school and working part time as a nurses AID in home care. I just got my second Associate degree in December. Friday i took my state boards and now i am an licensed RN. I have been living in an apartment with my mother for the past 12 years and sadly my mother died from a massive stroke!!1 its horrible and i am heart broken.. i am broke this apartment is too expensive. i am not in public housing nor do i want to move into public housing ... i work in public housing and i am sorry it is not for me ! my school loans will be due soon. my question is can i afford to go off ssdi? is there a shut off for ADAP? and will i even be able to work full time? my back is ruined from this job. my legs hurt all the time? i was thinking mom would live till 95-110 instead of 84.. she was very healthy... i can put off my loans by going for my BSN at an online university, which is what i planned on doing anyway.. can you help me? I am kinda in a panic here.. what happens if i find i cant do the job or workload? or i get sick? can i go back on ssdi or will i be homeless...i am 50 and i live in Rhode Island...please help and thanks Tom M. RN

  Response from Mr. Chambers
Tom, first congratulations on becoming an RN. That's quite an accomplishment, especially given all you have gone through. Also, my condolences on the loss of your mother.

Before you actually go back to work, I recommend you first see how you can handle a regular schedule. You have been out of the work force so some time so this will be a big adjustment for your body. With your legs and back problems, you need to make sure you can physically handle a regular work schedule.

Get you get out and do something on a regular basis. It can be volunteer work, it can be just going to the library to read the paper. But get up and go, every morning at a set time. Do that for a week or two and see how your body handles it. You don't have to stay out for eight hours, at least at first, but you do need to get up and go out on a regular basis as if going to work. Once you go to work you will be expected to be there every day, not just when you feel up to it.

SSDI offers some generous benefits to encourage you to try going back to work once you are ready to actually work at a paid job. They provide 9 Trial Work Months (cumulative not consecutive) when you can earn whatever you are able to earn without affecting your benefits.

After those are used up, you will still be able to collect your SSDI benefits and stay on Medicare as long as your Countable Earnings does not exceed $1,010 per month (in 2012). Countable earnings are generally gross earnings less any out-of-pocket expenses for work related care, call Impairment Related Work Expenses or IRWEs.

Clearly this can get complicated so Social Security has put out an excellent book on going back to work and its impact on SSDI and Medicare (as well as SSI and Medicaid which you do not appear to be getting). It is called The Red Book available at this link.

Do NOT return to work until you read it and understand the rules. You do not want to end up with an overpayment of benefits when you were working too much and benefits should have stopped.

Treating patients as an RN requires a lot of standing and walking, so you may want to look for jobs, even part-time, that are more consulting and advising rather than direct patient care. Insurance companies, as well as medical facilities, utilize a lot of RNs in various desk jobs.

I realize you have a serious need for additional income, but you need to know what you are able to do and what the SSDI rules are before actually going back to work.

Good luck, Jacques The Red Book.

Offline emeraldize

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Re: Thinking of getting off SSDI????????
« Reply #5 on: June 20, 2012, 03:58:13 PM »
Hi there

I know--youngsters don't give much of a rat's ass about benefits BUT could you get one of them to look it up in their employee file, or website, or go fishing online?

If a nursing home is your heart's desire, some are owned by conglomerates and may have websites you could access for clues.

Another way? Get an appointment with an HR person at one of the places you wish to work for an informational interview. Rather than respond to an ad, you initiate an explorative meeting and you're serving a dual purpose---interviewing them while letting them see what a self-starter you are. Em
« Last Edit: June 20, 2012, 04:54:25 PM by emeraldize »

Offline rip10199

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Re: Thinking of getting off SSDI????????
« Reply #6 on: June 20, 2012, 04:22:35 PM »
yes that is me .. i'm thinking of September for job search.. i am in process of selling everything i own .. to pay off debt .. i have a lot of junk it needs to go, i want a fresh start.. i have worked full time already and nursing school was like working 2 jobs !! plus i worked part time through school as well.. so aside from my back which is the real worry... i think i can handle it ... but without an ok from my Dr im in limbo.  i'm just trying to get info i need to get rolling...  i'm also waiting on family to get some of this stuff of my moms !!! so i can leave !!! thinking studio for 1 year then house !!

Offline emeraldize

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Re: Thinking of getting off SSDI????????
« Reply #7 on: June 20, 2012, 04:54:07 PM »
Sounds like you've got a plan in the offing. Do look critically at rent v. buying as you're jumping in at an older age, you'll pay dearly for repairs/upkeep -- good to keep an open mind. PLUS -- with a fabulously portable job such as nursing, you may wish to relocate and getting out of a lease beats selling a house in terms of speed and even cost-cutting.

Addendum: re " but without an ok from my Dr im in limbo."
What's his criteria and forecast turnaround to give you a letter?
« Last Edit: June 20, 2012, 04:55:53 PM by emeraldize »

Offline rip10199

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Re: Thinking of getting off SSDI????????
« Reply #8 on: June 20, 2012, 06:53:56 PM »
you need a clean bill of health to work as a nurse !!! meaning can i lift someone if i have to !!! it is very tricky situation, i hope the epidural helps ... still not sure if it will. i'm very tall and the injury is very low in a bad place..

Offline emeraldize

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Re: Thinking of getting off SSDI????????
« Reply #9 on: June 20, 2012, 07:51:34 PM »
Well, there are other places in the world that want nurses in non-patient care jobs. Are you open to that? How about something like research? Or, an insurance company?

Offline STLTommyD43

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Re: Thinking of getting off SSDI????????
« Reply #10 on: July 04, 2012, 01:05:19 PM »
RE:  rip10199
Hi, I have been on SSDI for 2 years and 3 months or so so I understand EXACTLY your concerns.  I know that my decision was the hardest thing I ever had to make!  I say exactly but I would have to tell you that no two situations are the same!  First, you need to find out what your benefit amount would be AND if you would qualify for SSDI.  Contact your local Social Security Office to find out what amount you qualify for, that may decide for you right there!  The next step I would recommend is to find a company, NOT a lawyer who deals ONLY with SSDI in your state.  The reason I say this is lawyers many times will take the amount they are awarded by law (a third of any back pay, if any, and everyone does this even the companys) but lawyers will many times also add fees for simple things like copying etc.  Check that out with the SS office too!  I know there is a maximum that they can get no matter what you are awarded even with back pay. 

Also I would check then with any of your Dr's to see if they will support your claim that you are in fact disabled?  If they are in doubt, I would hold off, but I would make sure that ANY time you go to any Dr or miss even 1/2 day of work or whatever that they document that!  I worked for 7 years at my last job full-time and had numerous health issues, some not related to HIV at all.  Since my job started giving me a hard time for being off sick I had a WONDERFUL Dr who would fax notes for me and document that in my chart, even if I missed a day and didn't HAVE to have an excuse. 

Not sure if you realize but you have to be out of work for 5 months before you can collect.  I was lucky that I had so much documentation that I Qualified right away, I know others who have had to appeal and it can take a year or more, so while you may be qetting a large check  (Back pay)m sometime in the future, what will you do in the meantime for bills??  Also check with your Student loans because if you owe money they may garnish your payments, or if you get back pay they may take it out of that, check and see, and see how much your NET income would be if they did garnish your wages.  Once you have started your claim, 5 months after you are not working or I guess sometimes its not working full-time, then it's another 2 years before you would qualify for Medicare, and then depending on your GROSS income, you may be elgible for both medicare and medicaid, as well as food stamps. For example, I was on a six month medical leave that started in Novmber 2009, and I didn't get a check until May of 2010, then I had Cobra which lasted until May 1st 2012 when I got on Medicare!  I unfortunately make about $200 a year over so I am responsible for my monthly medicare premium (99$ in 2012/month).  Luckily in my state they have an Extra Help and other programs that assist with my prescriptions so my costs are very low, and since I am on so many meds I quickly go into what is called catostrophic coverage, where most of my meds that my part D then covers for free. (Prescription for Medicare, for which you may also have to pay a monthly premium, depending on your income and state programs that help with that)   I do have a 140$ deductible, and then since I do not qualify for full medicaid too, I have to pay 10% of my Dr bills aafter I have met my deductible which is about 20$ a visit, for a regular Dr!  ( I have also had to pay 60$ when I get nerve root injections so it varies on what all your needs will be!)

Just trying to explain some of the issues you may face, your best bet is to go online to Meidcare.gov and see what info you can get, there should be a number you can call that is for a CLAIM, and they will send you a Guide for your specific state which will provide more info about what is available beyond just medicare.  That is the big myth, everyone thinks all of a sudden you don't have to pay anyhting at all for health care and thats BS! 

I will say this, I am glad that I stuck it out as long as I could because it pretty much came down to me spending a LOT on insurance and prescriptions, and since I worked out of doors in the heat, I was sweating all those expensive meds out and they weren't working.  It also increased the amount I recieve a month as it's based on how much income you have earned over the past years! 

I can't decide for you but I would offer this advice, if you are feeling depressed, get a referral for a Dr for that, if you have issues other then pain and HIV, or complications of full blowns AIDS, it all adds up!  I was told by my case manager at the company that I filed at that there are many people who have never been to the Dr, and all of a sudden decide to file and of course they get turned down!

A few other things, if you can find someone to work with you by phone or if you have a scanner for documents, its great, even if a friend can fax things for you!  MAKE COPIES OF EVERYTHING YOU SUBMIT!  People will call and say, we never got it, it got lost etc, and that's why I stored it all on my computer in a file for each agency I worked with, and every document I received or filled out and sent is still stored here, first initial, last name and the date, then what it is, for example, J. Doe 7-4-2012 Medicare application, in your medicare file.

Sorry if I rambled on, but I knew NOTHING and I was going through a short sale of my house as well as being exremely ill at the time as well as anxious and depressed so it is not easy, but it was worth it, at least for me.  I have put weight back on, raised my Tcell count, my viral load is undetectable and although I have chronic pain, it is managable!  I am pretty sure I would be dead or VERY ill right now had I not chosen to do what I did.  While I was still working I literally would collapse in bed, maybe get up for a half our to eat a little something and then sleep through until it was time to go back to work!  Plus I slept all weekend so I could never get caught up on even laundry! 

A few other sugestions, look into resources for things like food banks, rent assistance, utility assistance and the like as well!  I would check around on here too to see if they have links to local HIV programs as a case worker can be a BIG HELP! 

I am on a fixed income now and nothing is for sure, but its similar to working life, the car breaks down, and you need 200$ for that, etc, but you can have a "rich" life and the time to spend with friends, family and loved ones as well as being able to NAP whenever you need! 

Whatever you decide, good luck and I hope and pray that all works out for you no matter what you decide, but get the info and start documenting all your health issues as they happen!    Take Care! 

Offline STLTommyD43

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Re: Thinking of getting off SSDI????????
« Reply #11 on: July 04, 2012, 01:18:11 PM »
Sorry, I didn't read all the responses to know you were on SSDI already, so you know a lot if what I told you, still I think it is fitting that I can share my story on Independence Day, even though I am dependent, but free!  I hope someone else reads it and gets help from what all I shared!  P.S. I originally worked as a Nurse, took the boards on my birhtday almost 19 years ago and then found out the week after I learned I past my boards that I was positive!  I did work in the feild for almost 8 years, but with a mom in the hospital and the poor treatment that I saw, plus my missing work due to ill health I decided the $ wasn't worht my sanity!  That is not the job I ended up leaving when I filed for SSDI, the worst was my boss was a Gay male who I finally had to tell and after telling me he would never fire me, he went on to make sure that I hated working there!  Oh well water under the bridge, as I said, I am healthy, mostly happy and have the time and energy to enjoy life. 
Plus the info I learned as a RN has helped me through all this as I know  when the Drs are BSing me! 

Take care and again, good luck! 

(Oh and I still get offers in the mail to "Come back to Nursing!"  I tell my dad, I could do that for a while, but it would be easier just to go straight to the booby hatch for me, as what I see of health care its only gotten worse!)

Offline BT65

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Re: Thinking of getting off SSDI????????
« Reply #12 on: July 04, 2012, 04:38:42 PM »
If you go on Social Security's website and put "redbook" in their search engine, it will explain all about working and going off SSDI.  It's a tough decision, and not one I would encourage unless you know for sure you have a job with insurance.  Good luck!
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