Medicaid and working.

[Mark]

So I've hit a big of a snag with my situation.  As things stand now, I'm on Medicaid.  That's fine and all, but it's not something I want to be stuck on my entire life, because of the really extreme income limits.  However, the system seems to be pretty broken in that there's no reasonable way to work and still retain those benefits. 

I do dialysis at night, and I'm in relatively good health overall.  I'm sure I could handle working without a problem.  The only issue all comes down to my medical coverage.  That's something I simply can't afford to lose.  There's no way I could cover my own medical costs, and with health insurance being a for-profit business, where the company is basically taking a gamble with the hopes that they'll make money off of you in the end, there's no way anyone would cover me, since there's no doubt that they'd lose money in the end.  That's not even mentioning the problems I'd have getting hired anywhere where they'd have to offer health coverage.

It's certainly a broken system, but I absolutely refuse to believe that there's no option there whatsoever.  I'm an Ohio resident, and I recently came across this Medicaid Buy-In Program for Workers with Disabilities, and I've heard that every state is required to have a similar buy-in program.  Does anyone have experience with anything like that?  It sounded like it's just what I'm looking for, but I'm still iffy about it.  Considering how the guidelines work compared to the normal Medicaid program, I can't help but feel like there's a catch there somewhere.  Not to mention, you need to be working to apply for that.  Working causes problems with Medicaid.  It seems like it'd be tough to avoid some gap in coverage there if you try switching, which is kind of catastrophic in a situation where costs never really slow down. 

And for those without any knowledge on that, any other suggestions are fine, too.  Unfortunately, this seems to be kind of an uncommon situation for people to be in, since it seems like a lot of people with CKD aren't in any condition to work, and most of them are significantly older than me anyway, and already have health coverage through an employer, if they are working.  It's been a problem for me since before I could work, which...kind of complicates the whole issue.

Related, does anyone happen to know general numbers for dialysis costs?  Mostly when it comes to PD supplies.  I've been trying to find info on that, and I'm coming up with very little.  It'd be nice to find out the stuff isn't quite as expensive as I'd imagine.  Of course, it doesn't change that I'd have the same problems if I ever had another transplant, but it'd be nice to know that I could still manage paying if I had to pay even some percentage of the total cost.

Also, topic 20,000.  Whoo.

[okarol]

Why aren't you on Medicare? My daughter became a dialysis patient while a minor, never worked but still qualified for Medicare and SSI. I don't know the answer but hope someone who does will post.

Hey, congrats on 20,000 lol

[Mark]

Why aren't you on Medicare? My daughter became a dialysis patient while a minor, never worked but still qualified for Medicare and SSI. I don't know the answer but hope someone who does will post.

Hey, congrats on 20,000 lol

I've still been meaning to check into Medicare, too.  I've never been totally clear on how that works.  I know they have special rules for individuals with ESRD, but I wasn't sure if you need to have paid into Social Security to qualify. 

On top of that, I wasn't totally sure about Medicare deductibles.  That's part of the reason I'm hoping to get some info on the costs involved.  I know that as my situation was before, there's no way I could have paid even 15% of my medical costs.  I was worried about the part D donut hole coverage gap, too.  I don't know just how much my prescriptions cost, but I can't help but feel like it'd be enough to get deep into that territory every year.  While having a good job might make it work, I don't want to take a gamble on my health before I have any idea what will actually happen.

Premiums concerned me a bit, too.  Last I checked, those ran especially high.  For Medicare Part A, if I'm not mistaken.  That's just hospital insurance, which I really don't use as of late, but I don't want to be completely screwed if I end up in a situation where I do.

[okarol]

Are you wait listed? Why not try to get transplanted? What were the problems with your first one?

[Meinuk]

There are resources in Ohio for rehabilitation (going to work).  Here is a link to what your Network has on line:
http://www.therenalnetwork.org/services/rehabq.php

Are you working with your unit social worker?  You should be able to do at least part time work, and build your resume.  Have you written your resume?  Made a list of what career path you want to be in? 

All of this is doable and won't cost anything.  There are resources out there for returing to work.  As far as Medicare is concened, are you eligible?  There are programs to help you pay premiums if you are low income.  You may even be able to get into a training program, or college classes for seriously reduced tution (sometimes free). If you aren't ambulatory, there are many on-line classes.

My advice would be to decide what you want to do, and do it.  Assess your skills, assess your financial situation, take advantage of every opportunity available to you and start climbing the corporate ladder.

Also, there are some serious anti discrimination laws, if you feel that an employer is not giving you a chance because of your medical situation, you may have just cause for litigation.  You do not need to mention dialysis in a job interview.  Just be realistic with yourself when you apply for a job.  Is it something that is overly ambitious for the first time out? Start small.  The job market on a whole is tough right now, but there are opportunities out there. (One of the people in my old unit was an e-bay power seller, and got health insurance from e-bay (not very good insurance, but still - wo knew ebay offered health insurance???) http://pages.ebay.com/services/buyandsell/powerseller/healthcareprog.html

Many people here on IHD work and/or take classes - it can be done.  I also would not be afraid of the medicaid buy in until I were in a position of needing to worry.  Find the job, and make it work for you.

[Mark]

There are resources in Ohio for rehabilitation (going to work).  Here is a link to what your Network has on line:
http://www.therenalnetwork.org/services/rehabq.php

Are you working with your unit social worker?  You should be able to do at least part time work, and build your resume.  Have you written your resume?  Made a list of what career path you want to be in? 

All of this is doable and won't cost anything.  There are resources out there for returing to work.  As far as Medicare is concened, are you eligible?  There are programs to help you pay premiums if you are low income.  You may even be able to get into a training program, or college classes for seriously reduced tution (sometimes free). If you aren't ambulatory, there are many on-line classes.

My advice would be to decide what you want to do, and do it.  Assess your skills, assess your financial situation, take advantage of every opportunity available to you and start climbing the corporate ladder.

Also, there are some serious anti discrimination laws, if you feel that an employer is not giving you a chance because of your medical situation, you may have just cause for litigation.  You do not need to mention dialysis in a job interview.  Just be realistic with yourself when you apply for a job.  Is it something that is overly ambitious for the first time out?

May people here on IHD work and/or take classes - it can be done.  I also would not be afraid of the medicaid buy in until I were in a position of needing to worry.  Find the job, and make it work for you.

That's a useful site, but it's more geared towards the actual rehabilitation end of things, which isn't really an issue for me.  My issue is one purely of financial coverage.

I was just talking to my social worker about it yesterday, actually.  Unfortunately, she doesn't know of anyone else in a situation similar to mine.  She offered some advice that I plan to check into, but I'm thinking it runs into the same kind of Medicaid buy-in I mentioned.  I might be able to do part-time work without a problem, as long as my income is kept under about $500 a month.  Problem is, what I'm aiming for here is self-sufficiency, which is all but impossible with standard Medicaid rules.  Basically, I get SSI and Medicaid now.  Medicaid limits monthly earnings to $589, and SSI limits monthly income to a higher amount, but annual income to about $6,000.  And almost any money I make from working would be taken out of SSI on a dollar-by-dollar basis.  So quite literally, the only way to be able to make more than $600 a month would involve losing Medicaid coverage.  I don't care about SSI.  I'm surviving on that now, but to put it simply, I'm not content with just surviving.  I don't mind it now, but it's not something I could deal with most of my life.  My one simple goal in life is to be able to live comfortably, so I'm gonna find a way to do that.  $679 a month simply isn't enough to live on.

I would imagine I'm eligible for Medicare.  When I first started at the dialysis clinic I go to, they wanted me to enroll.  I skipped on it at the time because of the premiums, but there's no reason I should be ineligible.  While being able to get around premiums would help, if I'm low-income enough to qualify for that, I'd imagine I wouldn't be able to pay deductibles, so it'd still be a problem.

It's an odd thought, but I've actually considered opening a small computer business.  I know where my skills are, and computers are definitely my specialty.  I was iffy about the idea of actually opening a business, but it works out well in theory.  The main benefit being that if my health ever did take a turn for the worst, or something happened that required me to stay in the hospital for a while, I wouldn't have to worry about being fired.  Not to mention, the field pays well enough that with the way I spend, I could manage to have a good amount of money saved away for a bad situation.  I'd rather not be screwed in the case of a transplant.  I had one about eleven years ago, and while the procedure may have changed since then, I was out of commission for a good while after that.

I've considered building and selling computers at a profit for money that..wouldn't really have to be counted towards something like that, too, but I'd prefer something totally legit.  And I enjoy computer repair.  You know, follow your dreams and all that stuff.

Also, for anyone on Medicare, what do you usually have to pay in the way of deductibles each month?  Particularly for PD patients.  I would expect the dialysate, clinic visits, medications, and supplies to all add up, but I don't really know.  Maybe it's not as bad as I imagine.

[Desert Dancer]

Hi, Mark -

I can't address your issues regarding work and Medicaid, but I can say you *should* be eligible for Medicare ESRD coverage. I am still waiting for mine to come through so I can't really speak to the out-of-pocket expenses, but I was told my monthly premium for Part B will be only $110.50.  Not too bad, really.

[Mark]

I am still waiting for mine to come through

That brings up another issue.  How long have you been waiting?  And how long are people usually expected to wait?  Probably good to know if I should get started on that early.

[Meinuk]

I just stumbled accross a PDF from Life Options (GREAT RESOURCE!) The pdf hasn't been updated since 2003, but the meat of the material is still pretty good.

Employment: A Kidney Patient's Guide to Working and Paying for Treatment
This 108-page updated primer now has information for people with kidney disease and people on dialysis or with transplants. Topics include employment and vocational rehabilitation; Medicare, Medicaid, and health insurance; disability programs, including SSDI and SSI; and federal legislation affecting kidney patients. The booklet also includes a glossary of terms and a list of resources.

http://www.lifeoptions.org/catalog/pdfs/booklets/employment.pdf

From their website: Life Options is a program of research, research-based education, and outreach founded in 1993 to help people live long and live well with kidney disease. A national panel of doctors, researchers, patients, nurses, social workers, dietitians, and ESRD Network directors reviews all Life Options materials and helps guide research.  http://www.lifeoptions.org/

[rsudock]

Hi Mark
 I'm in Ohio as well and can understand your frustrations in your situation. Seems like all we want to do is have a long productive, healthy live but then are bound by all these insurance and finacial terms...urg!

some answers to your questions you should qualify for medicare as soon as you start dialysis. I started the end of July and recieved my "insurance card" the following month. Hardly any wait. Then as far as premiums go I pay mine in 3 month increments which is little above $300. I am on hemo though, but I don't think it really matters what dialysis you are on....i could be wrong.

take a day and go to the social security administration building with all your questions written down. I took a day off of work and went in at a less busy hour. I walked right in got my questions answered and walked right back out.

xo,
R

[Meinuk]

If you start directly on home dialysis, have no other insurance and qualify for Medicare, it is retroactive to your start date, (which is a GREAT incentive for Home Hemo IMHO)

From page 11 http://www.medicare.gov/Publications/Pubs/pdf/10128.pdf

Medicare coverage can start as early as the first month of dialysis if you meet all of the following conditions:
You take part in a home dialysis training program offered by a Medicare-approved training facility to teach you how to give yourself dialysis treatments at home.
Your doctor expects you to finish training and be able to do your own dialysis treatments.
You do your own dialysis regularly during the four months you would otherwise have to wait for coverage to start.