getting back to work

[Amy]

(Topic from archives: Originally posted 14:20:07 03/08/2003)

I have been on dialysis nearly one year. I hope to begin nocturnal dialysis within the next few weeks and expect to be feeling much better. Currently I receive SSI and Medicaid. I am trying to find as much info on how to return to the workforce but cannot find any information. I contacted SSA and they only gave me information about work and regular SSA disability. I also contacted our Family Services Office and they have absolutely no answers at all. I live in Missouri and am hoping someone could give me a few ideas on how to re-enter the workforce and/or return to college. I am thinking of training to be a nurse or a dialysis tech. Any ideas? Anyone?

[Beth Witten]

When you apply for disability, it is usually granted because you have a condition that expected to limit your ability to work for at least a year. It seems like the government would have incentives to help people get back to work right away, but some of the work incentive programs are new. I've heard that it's best to wait until you've gotten disability payments for at least a year to be sure that you can take full benefit of all available work incentive programs.

There are a work incentive programs that apply to people on SSI and those that apply to those on SSDI. You can read about the programs that fit your situation on the SSA web site in the section on Employment Support Programs at http://www.ssa.gov/work. SSI work incentive programs let you:

* Ease back into working without losing all your SSI cash (Section 1619a);
* Keep Medicaid when your income is higher than the normal state Medicaid guidelines (either Section 1619b or under a Missouri program called Medical Assistance for Workers with Disabilities);
* Designate money for a Plan for Achieving Self-Support (to start a business, pay for training, pay work-related expenses, and in some cases even buy a car) without losing any of your cash benefit if your goal is to no longer be dependent on SSI;
* And much more

You can read about these programs and see examples in Social Security's Red Book at: http://www.ssa.gov/work/ResourcesToolkit/redbook.html

When you talk with Social Security, ask to talk with the representative who knows about work incentive programs for people with SSI. Be aware that State Medicaid caseworkers may not be knowledgeable of Social Security work incentive programs so you may need to take SSA materials with you if you plan to discuss these with your Medicaid caseworker. Also, keep in mind that working can affect other benefits that you get. There are counselors that can help you review the pros and cons of working. You can find these on the SSA web site under Benefits Planning, Assistance, and Outreach at http://www.ssa.gov/work/ServiceProviders/bpaofactsheet.html.

You may not have heard about the Ticket to Work program. Every SSI and SSDI recipient should get a voucher with a brochure explaining the program. You can take your voucher to your state Vocational Rehabilitation agency or to a private vocational rehabilitation company. If the program believes it can help you and takes your voucher, it can help you get skills or training you need to work and help you find a job. The program gets paid if you find a job and keep it so it's to their benefit to help you reach your goals. See http://www.yourtickettowork.com for more information about this program and what Employment Network provides services in your area.

The Life Options Rehabilitation Program is updating its booklet on employment and finance. It should be available online in the summer of 2003.
Good luck!

[Jill Selby]

I am on hemo dialysis three days a week. I work three and sometimes four days a week as a pharmacy tech. and I really enjoy it.

I was working in a hospital for two years as a volunteer in the pharmacy. Then I worked for ten months at one pharmacy in the evening. I asked for day hours and the manager wouldn't give them to me. So I got a new job in another pharmacy working days and I quit my night job. I'm very happy.

I plan to hopefully get a kidney transplant and then work full time.

I also run a transplant support group in Little Silver, NJ. I am very upbeat and optimistic. Our group meets the 2nd Tuesday of every month at the Little Silver Firehouse, 543 Prospect Av, Little Silver.
All are Welcome. Call 732-530-6789 for directions. Jill Selby Chair.

[Beth Witten MSW ACSW]

Hi Jill,
Congratulations on finding a way to keep working on dialysis instead of just giving up and taking disability. When you have a potentially disabling condition, like kidney failure, if you ask for accommodation (other work hours) that are not unduly burdensome to an employer, the employer is supposed to grant your request under the Americans With Disabilities Act (ADA). I don't know what you did to convince your former employer to grant your request for a change in hours, but it is great that you found a job that you like that allows you to get all the dialysis you need. Down the road if you run into the problem again, remember the ADA.

Home dialysis is another option that patients choose to be able to work and do dialysis. You can read about home dialysis and find places that offer it on Home Dialysis Central (http://www.homedialysis.org).

Thank you for letting folks on this website know about your support group. You might also want to post information about it to the Dialysis_support listserv that has around 700 members. You can find this online support group at http://health.groups.yahoo.com/group/dialysis_support/.

[Gglee]

I would be careful and think about what you want to go back to school for. I have been on dialysis for almost 6 years now, and the more schooling I had, the more thinking I had to do about my career choices. I was going to school for nursing, then thought, if I get a transplant and am working in a hospital, I am putting my own health at risk, with a decreased immune system. I am now going to school for Occupational Therapy. I will still be helping people, and will not have to risk my own health in the event of a transplant.

As far as getting back in to the workforce, maybe apply for a job that will offer advancement. I'm not sure what kind of work you did before starting on dialysis? I never stopped working, I would just take a lot of time off (my job allowed for this) and then after about a year, I switched employers and was able to set my own schedule (around dialysis) and now I am able to do a lot of work from home, so I can still work if I don't feel well.

Good luck.