Let me throw something out here :

  If you are on SSD because you need organ transplant, what happens if you get one? Will SS decide you can be on the work force or what?

My husband had that question posed to him since he now has had a transplant. My husband also had other issues (like crohn's), so he will still qualify. I know others have returned to the work force after transplant and I think it is great.

Has anyone had this happen to them? Just a discussion:)

 

Sarah

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I've  never  been  on  SSD,  because  I  continued  to  work  all through  dialysis 

(6½yrs).  So I'm not  sure  how  that  works.  But  as  far  as  Medicare  is  concerned,  there  are  ways  to work  around  the  system.  If you're  still  disabled  you  can  remain  on  Medicare  provided  you  still pay  your  quarterly  dues.

If  you get  transplanted  and   have  no  other  medical  issues,  Medicare  stops  at  36months  post  TX,  whether you're  working or  not.   

Take  care!  :)

Marina          

Because you had a KIDNEY transplant, your Medicare coverage will continue for at least three years as long as you pay your Medicare Part B premium, even if you are no longer disabled. (For other transplants, anti-rejection drugs are covered only as long as you are considered disabled). If the program you are participating in is the Ticket To Work program, you will continue to be considered disabled by Social Security as long as you are meeting the progress goals in your individual rehab plan (which may include school only, or work only, or a combination)--and your meds will be covered by Medicare as long as you are covered.

 

Make sure that the agency you are working with registers your Ticket To Work as "in-use." They should verify to you that they have done this. If you have SSDI, you will continue to get your full check for 9 months after you start working at a job. You will continue to get Medicare benefits as long as your Ticket To Work is active, which will be until you have worked a total of 60 months. This time may be spread over a period of 8-1/2 years. If you have SSI, you keep the first $65 you earn in a month, then your check is reduced by $0.50 for every $1 you earn above $65. You keep Medicaid as long as you need it to keep working.

I think there's a provision that you can pay for Medicare Parts A and B after your Medicare ends. The combined cause would be around $600/mo. If you are not entitled to coverage under Part B, you can get transplant drug coverage under Part D, the prescription drug benefit.

Audrey,

Have you  ever heard of the  "ticket  to  work"  program>

 

Here's some  info:

http://www.kidneytimes.com/article.php?id=20091005171006

Ticket to Work Program EasyLink Access #: 458

By Diana Headlee-Bell

Are you a candidate for this program? If you are a beneficiary of the Ticket to Work program, you may be eligible for hiring. The jobs available to those with disabilities are at various skill levels including entry level positions.
A Ticket to Work holder, are those beneficiaries that were issued a ticket, who would choose to assign those tickets to an employment service of their choice. The service in return would help them to find work and maintain employment. The services can include vocational rehabilitation services or other services that will help achieve the work goal. 
 
What is Ticket to Work? This program was initiated in 1999 by the Social Security Administration called the Ticket to Work and Work Incentives Improvement Act. The initial regulations were published in 2001. It is a voluntary program helping beneficiaries get back into the workplace and not rely solely on Social Security benefits.
 
Recent regulations have been set in place to enhance the Ticket to Work program. The new proposals are to encourage the service providers, educational programs, and employers to become part of an approved Employment Network. This improvement has shown new employment networks increased from an average of five per month to an average of thirty four per month. While these new proposals are too early to access, this is an encouraging sign for to those who are disabled and wanting to return to work. This in return, will increase the chances of employment for those individual with disabilities.
 
How will the Ticket To Work Program help you? You are able to get free training, job referrals and other services you need to work. You can give your “ticket” to an approved Employment Network at this point you and the Network make a work plan. The goal is to help you return to the work place, and to achieve financial independence. 
 
What do you do to participate? First steps in participating in Ticket To Work Program,
 
1.       Take your “Ticket” to an approved provider of your choice. This provider can be either an Employment Network or a State Vocational Rehabilitation Agency. 
How do I find an approved Employment Network? They are listed at the MAXIMUS, Inc. This is a company that helps Social Security manage Ticket to Work. Website at www.yourtickettowork.com or you call MAXIMUS toll free at 1-866-968-7842.
2.       Your participation in the Ticket to Work program begins when you sign an agreement with an employment network or state vocational rehabilitation agency. With their help, you develop an employment plan. While you are in the program, they will review your progress in achieving the goals of your employment plan every 12 months.
                                                                                        
You can also attend a free Work Incentive Seminar Event (WISE). WISE are community events held by Work Incentives Planning and Assistance (WIPA). These events are held for beneficiaries with disabilities and their families to learn more about available work incentives through accessible, informal, learning opportunities. 
  
WIPA staff will help you understand how work affects the beneficiary payments,  also help you find the right network to help you go to work and explain what other federal, state and local supports are available to help people with disabilities who work.

To see if there is an upcoming WISE in your state, please go the following link: http://www.cessi.net/WISE/
 
For more information about the Ticket to Work Program go to:

Wow, there is a lot of information on this one!! Great subject.  I had a double lung transplant 16 yrs ago and I still receive  benefits as I have had a few "speed bumps" along the way.  One thing I do know is that you DO NOT have to see the SSD doctors!!  They have to work with your doctor.  I have never seen an SSD doctor.  There are times when I feel like I can go back to work, then I start volunteering and realize, a full time job is too much for me.... I admire those that go back to work. In the beginning, when I was approaching the "3 year limit", I asked my doctor if I should go back to work.  The answer I got was "if your husband lost his job, could you afford to buy your meds?" the obvious is no and the subject was never brought up again. I looked at it as a mixed blessing that I was able to be at home for my three small children (ages 11,9, and 5 at the time).  I worked as a nurse, and I would not be able to return to this field because of being immuno-suppressed and I have had some infection/rejection issues, as recently as February.  Everyone's situation is different....

Angie-nulungs95

Crohn's disease vs. ulcerative colitis page

 

Sarah Ann, what you think of maybe getting the problem taken care of so you do not have to go on SSI...... I had a LIVER TX 2/95. I had Ulcerative colitis for 25 years before my TX. It some how was the cause of me getting primary sclerosing cholangitis (PSC) scaring of the bile ducts causing cirrhosis and liver failure. The UCSF TX center recommended I get Total proctocolectomy with ileostomy. Their reasoning was at the time [1995] some people with that get this TX with this Ulcerative colitis disease in a few years get colon cancer.

 

I had my Liver TX 2/25/1995 and Total proctocolectomy with ileostomy on 5/02/1995. I was 52 at the time. I am now 68 and life for me after TX/TPw/I has just been great. I looked a lot like your husband in your posted photos of him before my TX. I had lost 55lbs and was down to 145lbs. With in a year after TX/TPw/I I was back to 200lbs were I had been most of my life and am still at that weight today. Other then a bout with pneumonia 2004 [2 month hospital stay] I have been very healthy and active...... Not sure if it would work for people with Crohn's disease. Just a thought that may get husband back to a normal life..........Burnie

Hi Burnie..Boy, I am blown away as you sound so much like my husband's case. He also had a cousin who passed awsay from Crohn's in his 40's. Hubby has been afflicted by Crohns for many many years and has had surgeries at Virginia Mason in Seattle. He was told he would have to medically retire by 30 and he said NO. I have kids to support and therefore he worked at same job 36 years b4 medical retirement at 60. Now, he is on SSD. He is still have probs with kidneys and kidney stones. I just do not know what the process was / is and do not like surprises. Actually, since retiring on ssd., we are better off.  Our medical ins. has been incredible. He has another year b4 he can go on medicare and then our ins. will be secondary, which will still pay what medicare does not. His whole transplant was covered and meds are $7.00../. Insurance premium for our family is 150.00 per mo., so I cannot complain. 

I just thought my question would get things going and people's minds going. These are things we need to think about.

So glad you are doing well.

Love, Sarah

I was not able to return to work after my liver transplant my kidney failed went on dialysis this about 5 years later now I've had a kidney transplant . So it all depenes what problems you have afterwards or him

5 Years ago, when my husband was listed, I tried getting him put on SSD but he was turned down.  We then moved out of state and I never followed up with them.  He found a job after we moved south but after two years he was fired because he went home sick one day.  Since we live in a right to work state it is legal to be fired for no reason.  I was so infuriated that I contacted a social security advocacy group and within 6 months he started collecting SSD.  About 2 months before SSD started though he found another job.  The way SSD was explained to me is that as long as you gross under $1,000 a month, you collect.  My husband never made over $1,000 because of all his doctor appointments.  He got transplanted about 6 weeks ago.  Social Security will follow up with his doctors in 8 months and if the doctor says he can go back to work or if he is working part time he can still collect as long as he doesn'[t make over $1,000.  My husband doubts he will ever be able to go back to work full time so it really won't be an issue

 

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