I work currently, but thinking about going on disability.

[msf21]

I have been trying to continue working while on dialysis but I have been thinking more and more about quitting and going on disability. My nurse keeps stressing the importance of working. Frankly I am tired of trying to balance the two. How is it financially living on disability? I know its not a lot, but is it enough? What changes did you have to make in order to make it all work? While I am waiting for the first check to arrive, what am i supposed to do about things like rent, groceries, car payments, credit card payments, etc? 6 months to a year is a long time without a source of income. I have no savings or other income to fall back on. Homelessness seems all but certain if i quit my job. 

[PrimeTimer]

I have been trying to continue working while on dialysis but I have been thinking more and more about quitting and going on disability. My nurse keeps stressing the importance of working. Frankly I am tired of trying to balance the two. How is it financially living on disability? I know its not a lot, but is it enough? What changes did you have to make in order to make it all work? While I am waiting for the first check to arrive, what am i supposed to do about things like rent, groceries, car payments, credit card payments, etc? 6 months to a year is a long time without a source of income. I have no savings or other income to fall back on. Homelessness seems all but certain if i quit my job. 

I think life would change drastically on disability but could also give you the time and rest you need to do other things other than sleep, work, do dialysis, sleep, work, do dialysis. But...unless you have a nest egg or retirement pension or spouse with a good salary still working, a person could expect to have to "pare down"...rent a room to live in instead of a house or an apartment, eat very small bland meals, forget paying off debt and keeping a car. Probably would have to move in with a relative or a friend who is willing to take you in. But I also heard a person could work part time while on disability, so long as they don't earn more than a certain amount, which is something you'd have to ask a social worker or financial coordinator about. To sum it up, I don't think being on disability would be called "living". At least not without some help to go along with it.

[Rerun]

My job had disability insurance that I paid into.  So when I took a disability retirement due to dialysis they paid me %60 of my salary until SSDI took over.  It took 6 months.

Look into your current job to see if you have had disability insurance taken out of your check. 

You could make that your goal.  Put as much as you can into savings until you have 6 or 7 months saved up to live on.

Otherwise I don't know what people do.

Now that I'm on disability I get a check on the first from disability and a check the third Wednesday from SS which is total between the 2 about 40% of what I was making.  AND I have a part-time job.

[Shaks24]

I had to close down my business. We refinished wood floors and I physically did the work with 1 helper. The equipment was heavy and you had to lift it and move it around. Also you had to spend a lot of time crouched down on the floor which was difficult with a catheter in your abdomen. I tried to sell the business but no luck with that. Ended up just selling the company vehicle and the equipment and shutting it down. I pretty much had to live off of savings while the disability process took place. Typically if you are on dialysis its a straight forward approval. The problem is that there is a 5 month waiting period from your onset date before the payments start. I was fortunate to have savings to live off of for this time frame. The SSDI payment will be just a portion of what you earned.  I think I applied November of 2013 and the first payment came in April of 2014. Its a tough choice but you should do what is best for your health and well being. When SS signed me up for medicare just after I started training for dialysis they asked me If I wanted SSDI. I told them I was going to try to keep working. Shortly after my catheter surgery I was working on a set of stairs. The next day my exit site looked real bad with yellow crust around the catheter. The clinic put me on antibiotics. That was it for me. I signed up for SSDI knowing if I continued to try to do the physical work, I would have problems. The SSDI check helps greatly. That coupled with my savings enables me to live comfortably but frugally. Thank goodness my youngest completed college earlier this year. I committed to fund college for my three kids and now they are all done. That took a lot of pressure off me.

[obsidianom]

I have been trying to continue working while on dialysis but I have been thinking more and more about quitting and going on disability. My nurse keeps stressing the importance of working. Frankly I am tired of trying to balance the two. How is it financially living on disability? I know its not a lot, but is it enough? What changes did you have to make in order to make it all work? While I am waiting for the first check to arrive, what am i supposed to do about things like rent, groceries, car payments, credit card payments, etc? 6 months to a year is a long time without a source of income. I have no savings or other income to fall back on. Homelessness seems all but certain if i quit my job. 

You are allowed to make around up to $12,000 yearly on disability so that helps a bit. You can work part time while on disability to keep some feeling of work .  The monthly payments vary on disability based on your income over the previous many years. You can look your own payments up on line at social security website. So you can add another $1000 a month max. if you work part time. You wont get rich but for many it works.

[iolaire]

How is it financially living on disability? I know its not a lot, but is it enough? What changes did you have to make in order to make it all work?

One thing that would help is to figure out what your social security payments would be.  They used to mail letters (say three years ago - they stopped it recently but will start it up again) that said what your social security payouts would be, including on disability, if you don't have access to those you should be able to find it on the social security site if you create an account.

Also keep in mind that if you have workplace insurance and you move off of it to Medicare you may be exposed to more costs, or need to pay personally for another insurance plan.  Read this thread to get a gauge of those costs (assuming the info is still relevant):
http://ihatedialysis.com/forum/index.php?topic=21752.5
I believe if you can not pay there programs to help. 

Homelessness seems all but certain if i quit my job.

That doesn't sound good.

Finally if you loose your income (and thus car) how will you get to dialysis?  Have you noticed how long patients with paid transport (I assume paid for via Medicare) wait around for their pickup?   From what I can see patients who wait for cabs and transports spend much more time getting to and from dialysis - making it even more of a commitment. (And maybe even more than me who spends an hour on the metro + bus to get there, but my wife picks me up promptly.)

[msf21]

I am relieved to hear you can take long term disability while waiting for SSDI, I thought it would be considered working because you still have a position if you come back. I went online to figure out what the payments would be. Its less than what I make now but more than I thought I would make.  That would help a little. Am I eligible for food stamps in addition to ssdi? I am not crazy about the idea of moving in with friends and relatives, I have been on my own since I was 19. I would feel like a huge burden.

Another thing, without working how do you feel useful? How do you pass the time? I don't get out much or have any friends really. The only time I get to socialize is when I am at work or when I visit family. I think I would go crazy if I were by myself all the time and had no outlets.

To sum it up, I don't think being on disability would be called "living". At least not without some help to go along with it.

I would have to agree with that statement. This doesn't feel like "Living" this feels like a delaying the inevitable. Even with a transplant you can never move on from this. If your lucky you get 10-15 years and your back on dialysis again. This whole thing is one big pain in the butt.








EDITED: Fixed quote tag error-kitkatz,Admin

[Michael Murphy]

This is my second week of disability after working full time for 18 months after starting dialysis.  I went out on corporate disability which is 60% of my last pay check.  They will pay this till I am 67.  When social security disability kicks in they will subtract the social security's payment from the 60% corporate payment.
I now feel like I have a life.  There is time between dialysis to actually do stuff.  Plus I was totally exhausted most of the time. Now I feel better.  As to affording the transition it will be tight as long as I live in New Jersey.  I plan to sell my house in the spring and move to my parents House in the Adirondacks. I in what could only be thought of as the smartest thing I ever did was to buy my sister out when my parents passed on.  I wanted a place to retire to.  In NJ my property tax is about 12000 a year in upstate NY with the state star program I will have to pay 2400 a year. Both house are of equal value and when I sell the NJ house I will pay off both mortgages so all I will have is tax and maintenance cost going forward. What I have learned is that some states are just not friendly for retirement.  Money goes further in the Adirondacks since labor, insurance, etc are so much cheaper.

[iolaire]

This is my second week of disability after working full time for 18 months after starting dialysis.  I went out on corporate disability which is 60% of my last pay check.  They will pay this till I am 67.  When social security disability kicks in they will subtract the social security's payment from the 60% corporate payment.
...   Money goes further in the Adirondacks since labor, insurance, etc are so much cheaper.

Did you have special disability insurance from work, or were did you work for an old style organization (i.e. unionized or pension based)?  I have not looked into it but I didn't think my disability insurance that's included for free is long term, maybe only a year or something.  We have the option to purchase a better disability insurance which I have not...

Have you checked out your dialysis options in the Adirondacks?  I'd think that would be the one area that would be more limited than in NJ.

[Michael Murphy]

I had the standard HP disability insurance,  Last year I could have paid extra and raised it to 70 % but I didn't.  In the Adirondacks I have two choices both 30 miles from my house.  However 1 supports Home Hemo without a partner by internet monitoring.  I love my wife dearly but the thought of her sticking big needles in me just gives me the willys,  Because of the storage or water requirements ( the Dacks house has a well or I would have to give up the third bedroom for storage) I have chosen to continue at the second site in Amsterdam.  I have used it while on vacation and am happy with the site.  However in New Jersey the 7 Miles I travel takes 20 minutes due to road conditions, (Traffic lights, construction, idiot drivers etc) in the Adirondacks the 30 miles I go only takes 30 to 35 minutes.  The winters worry me but I only own 4 wheel drive cars and the roads are generally good after a snow storm.  The person who runs the plows in most Adirondack towns is a elected position you don't plow you don't get reelected and you are out of work,  As a fall back there is a hotel 2 blocks from the Amsterdam dialysis center and if a large storm is being forecasted I could check in the night prior and travel the next day if the roads are okay.  During the winter the rates are reasonable.

[Deanne]

Congratulations on your new life! I opted to pay extra for long-term disability insurance through work, too. I hope I never need to use it, but your story shows me how glad I might someday be that it's there. It sounds like you were really thinking ahead with everything: the insurance, where to live, buying your sister out, etc. 

[iolaire]

In the Adirondacks I have two choices both 30 miles from my house. 

How hard is it to get a chair in a more rule area like that?  Just wondering, sometimes I wonder how it would be had I still lived in Alaska when dialysis hit (been gone since college).

[Michael Murphy]

Actually the center has never turned me down when I have requested a seat,  They only run 2 shifts 6 AM and 10 AM the center in NJ runs runs 4 seating on MWF 6,10,2,6 and three seating on TTS 6,10,2. So the center in the Adirondacks has a lower patient load.