Angie,
First of all I am NOT an expert is Medicaid and Medicare services. However, I'm going to take a stab at what may be some helpful information for you. Medicaid / Medicare is a massive topic with no easy answers. Medicaid is a program administered by each state, generally for people of low income. The federal goverment has established broad, general guidelines for the administration of Medicaid services, however it is left to each state to determine the eligibility of each applicant and types of services to be administered. "Medically needy" persons may be able to "spend down" in order to qualify for Medicaid services. It is not clear from your post exactly how you qualified for Medicaid, nor on what basis you were ultimately disqualified.
That said, I now want to mention "Social Security Disability Insurance" (SSDI) and "Supplemental Security Income" (SSI). These are federal programs to provide assistance to individuals with disabilities (two of many). SSDI is based on having "earned" credits through employment history and SSI is based on financial need. These programs are administered by the Social Security Administration. Numerous states base their definition of "disability" on the definition used by the SSA, I believe KS is one of those states. That definition of disability in the pure form is really quite strict. Applying that definition to individuals is a long process. Also, if one qualifies for SSDI, after 24 months they will become eligible for MediCARE.
I am assuming and reading between the lines, but your post leads me to suspect that prior to your transplant you had been employed and were perhaps on "disability" provided by your employer rather than an actual declaration of disability by your state or the SSA. (Disability income provided by an employer will end when, in a nutshell, they determine it ends--after all FMLA eligibility, vacation hours, sick hours, coverage provided by a collective bargaining agreement etc. has expired.) The SSA has a "list" of conditions qualifying one for "disability". A condition must be on the list or of equal severity. (I am going to provide a couple of links that provide alot of consumer friendly infomation about these disability programs.) An organ transplant does not automatically qualify one for a disability determination. In fact, most gastrointestinal problems respond to treatment (including transplant) and ultimately allow a person to return to some type of employment. A simple self-determination (or even your physician determination) is not sufficient to qualify for "disability". One must jump through all the proper hoops to prove you cannot return to the same type of work or adapt to another type of work.
All that said, I suggest:
1. visit these sites (and search for others) to educate yourself on disability
www.ssa.gov/disability (you can actually apply online)
www.cms.gov and follow the links for disability and Medicaid
2. contact your local SSA and state Medicaid offices to determine how you qualify and why you were disqualified
3. ***use the social worker on the transplant team at your transplant facility as a resource and helper--there are programs sponsored by transplant organizations and even pharmaceutical companies that may be able to provide assistance with your immunosuppressive medications. (Again, not an expert, but prescription drug coverage through Medicaid or Medicare, even if you qualify for disability is very iffy at best.)
4. be prepared to contact an attorney experienced in SSDI if you do chose to apply--it's not an easy process
and the last, this is going to seem cruel to you, but I think it needs to be said...
ask yourself and your physicians if you are truly disabled. I am a nurse and am familiar with transplant patients. I even have a niece who is the recipient of a liver transplant. I realize that severe, chronic liver disease may be disabling, but a liver transplant in itself is not disabling. Quite the contrary. Many transplant recipients of all types are able to return to employment.
I hope I have not assumed too much and I wish the best for you. If you have more information to clarify your post, there are several people on the forum that may be able to help you further.
lkc15507
