My doctor has told me that I’ll probably need to start dialysis by the end of the year. I work full-time. My friends and family tell me to take disability. I get tired, but my boss has been understanding and so far I’ve been able to work most days. Should I quit working and take disability or would I be able to work on peritoneal dialysis?
Hi Mike,
What kind of dialysis were you planning to do once you need it? If you pick a home treatment, you should be able to keep working–depending on whaqt kind of work your doing. Most people make way less money on disability than when they work. My disability policy at work would only pay about 60% of what I earn. Social Security doesn’t pay much, either.
Hi Mike,
More people who choose PD are able to keep working than those who do in-center hemodialysis. This is because people on PD don’t feel much different before or after a dialysis treatment. Another positive is that you can do dialysis using a PD machine while you sleep or if you do manual exchanges, you’ll probably only do one during your work day. Finally, if you do incenter dialysis, you go to the clinic around 13 times a month but if you do home dialysis, you go once or twice a month.
To find out how much you’d make on disability, contact your local Social Security office. Those who’ve worked long enough to qualify for Social Security Disability Income (SSDI) are paid based on what they made and paid into Social Security. [Note: If someone hasn’t worked or hadn’t worked very long, he/she might be able to get Supplemental Security Income (SSI) and/or a combination of SSDI and SSI.]
As of May 2004:
– The average SSDI check was $865/mo. Men got an average of $969.94 a month while women got an average of $738.19 a month.
– A disabled worker with a spouse and children got an average of $1,442 from Social Security a month.
– Someone on SSI got $564 a month (a couple gets $846) unless his/her state supplemented this federal payment (only a few do). To get SSI, you must not have over $2,000 in assets ($3,000 for a couple).
If you’re near full retirement age, you might want to know that in May 2004:
– Although the maximum someone got from Social Security retirement was $1825/month, the average retiree got $922/month.
– The average retired couple got $1,523 a month.
I’d strongly suggest that you tell your doctor that you want to work and ask for help to stay healthy enough to work. Your dialysis clinic social worker should know about things you can do and places you can turn for help keeping your job.
Beth, do you have to pay taxes on what Social Security pays you?
Maybe. It depends on whether you have other income in addition to Social Security benefits, whether you file individually or jointly, and how much income your spouse has. For more information about your specific situation, ask your tax advisor, call the Internal Revenue Service’s toll-free telephone number at 1-800-829-3676, or read [i]Publication 554, Tax Information for Older Americans /i and Publication 915, Social Security Benefits and Equivalent Railroad Retirement Benefits (http://www.irs.gov/pub/irs-pdf/p915.pdf).
Hello Mike. Lucky for you that your boss is understanding. IMO, you have an advantage b/c you are already working with the propect of going on PD. It’s been hard for me to find work, b/c I wasn’t working when I went on PD in May 2002.
If you employer is willing to be flexible with you, then you should not have any problems.
Good luck! 
If you’re interested in working on dialysis, one agency that is charged with helping people with disabilities train for and find work is your state vocational rehabilitation agency (for a list see http://www.jan.wvu.edu/sbses/VOCREHAB.HTM). VR can help you by assessing your job skills, interests, and values, help you find and pay for training programs to make you job-ready, and VR may even be able to help you find an employer known to hire people with disabilities. An employer that hires you through VR can get a tax credit. VR agencies get federal and state funding to provide these services.
If you get Social Security benefits, you should have gotten a “Ticket to Work.” If you don’t have it anymore, you can get another one from Social Security. This voucher can be used to pay for services from VR or a private “employment network” (EN). Read about ENs in your area at www.yourtickettowork.com. An employment network can do the same things that VR can do. ENs are paid by the federal government based on returning people with disabilities to jobs that pay enough that Social Security benefits end. Recently a decision was made that allows employers that hire people through ENs to get the same tax credit they get for hiring people through state VR.
No matter what kind of employment help you seek, you’ll have to educate the counselor about kidney disease and how you believe you can work even though you’re on dialysis. Typically it is much easier to work on PD or home hemo than on in-center hemo. FYI – There is a manual written for VR counselors ("Effective Strategies for Improving Employment Outcomes for People with Chronic Kidney Disease’) that is available online at http://www.rcep6.org/IRI27.pdf. If you talk with a vocational counselor, you might suggest this resource.
There are many myths that are untrue about working when you’re disabled. People worry that they’ll lose their disability benefits if they do any work and some have even been told not to volunteer or it will risk disability benefits. Social Security has work incentives that can help you return to work:
– Earn some extra cash (up to $580 in 2004) without risking your benefits at all
– Get a job paying more and keep benefits for at least 9 months (trial work period)
– Keep Medicaid for free or with a low premium in many states if you’re working with a disability (Medicaid buy-in)
– Get a deduction in the amount of earnings Social Security counts when deciding whether to reduce to stop benefits if you have to pay any expenses for your disability out of pocket (impairment related work expenses)
– Earn more without risking your SSI check if you’re a student under 22 and need to work to pay for school expenses
– Get disability benefits right away without a waiting period if you have a health setback
Read more about these and other Social Security work incentives at http://www.ssa.gov/pubs/10095.html.
Good luck in your job hunt. Let us know how it turns out.
Hi Mike,
I just went on CCPD (Cyler). I am lucky I work for the Government (Army) and I have a very understanding boss. I do my dialysis at night and if I don’t tell people they don’t know I’m on PD. I’m 62 years old and expect to work until I’m 68. My advice to you would be to go on PD (if at all possible. I was on Hemo for a couple of months and could have continued to work (if I had too) but it is much better on PD. I know Kidney failure is a kick in the butt but it’s just another obstacle we have to overcome. Good luck!!!
This is always such a hard question to answer. It’s easy to simply be positive-minded and say yes, but on the flip side, not everyone feels the same on dialysis, whatever the method you choose, and things don’t always necessarily go well 100% of the time. It’s easier to keep on working if you already are though.
Why don’t you just take a few weeks disability or sick time you may have accumulated and see how it goes. If you feel you can, then go back to work. However you feel, it’s going to be useful to have some time off at first to train for PD, and then to just relax and get used to it. At this point, since you’re already working, I don’t see this as an all or nothing decision. How you feel just leading up to starting dialysis is sometimes a good indication of how you will feel afterwards, because PD and ordinary 3 times per week hemodialysis just keep you at about that level of kidney function. Keep in mind though, that once you’re on dialysis, there is a potential for more frequent contact with the medical establishment in the form of appointments, transplant evaluations, sometimes hospitalizations for infections, etc.
Don’t interpret my post as being negative. I’m actually about as positive as anyone can get. But, I’ve been on dialysis for 3 years, and I’ve known a great many other people who are or have been on PD and hemodialysis. I think it’s only prudent to look at both sides of the story. In the end, you may find you can continue to work, and if so, that’s great. You can always retire later if you need to. Once you’re out of the workforce, it can be extremely hard to get back in at the same level as before.
Pierre
Your fortunate to already have had working with your employer before starting PD…depending on what you do there it shouldn’t pose a problem with your treatments.
I really think you should keep that job as long as you can, it will keep your health active and in good state. Keeping active is one of the important things we patients need in order to keep our vasculatory system working in par with our illness…
Take care and have fun!