Long story short my dad was diagnosed with ESRD and congestive heart failure back in May, he also has diabetes and high blood pressure along with severe nerve damage in both hands due to recent surgeries that doctors tried going in to place fistula for dialysis access and they had to be reversed because they failed to work. He was given Medicaid back in May and we were able to get him signed up for care giving services along with other services that Medicaid provided that helped him, transportation, equipment, full medical coverage, etc. he is also receiving SSDI ($1240). Well in November his Medicaid was terminated along with all of the services that are provided with it because we were told that his condition automatically enrolled him into a Medicare plan but that Medicare plan does not cover nearly half as much as his Medicaid was and now we are stuck once again and trying to cover that gap that Medicare leaves open in regards to home care, transportation and most importantly 20% that Medicare does not cover for his medical bills. I called and had him registered for a Medicaid waiver but we were told that it could take months even years for him to actually be approved and given the waiver. I guess my question is, how do these waivers work, what do they cover and is there any way possible to speed up the process of him being approved? We applied back in November and live in New Mexico if it helps. I’ve read that it increases his chances greatly of being approved if his condition worsens but his condition is already so severe I don’t understand why he wouldn’t have already been approved... mind you all he is only 43. I fear that nobody is taking us serious in regards to our concerns because he’s so young and they look at him and think, oh he’s not as bad as he portrays but he really is. Does anybody have experience or advice when it comes to these waivers? I appreciate any info you all can provide. Thank you.

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Also like to add as a old health planner..... using “ waiver” probably inaccurate for this situation. It’s more of trying to get eligibility as a “dual” imo.
Waivers as a part of health funding tend to mean that one is applying for a waived diversion of allocated dollars. For example, public laws passed related to Medicare & Medicaid require states to provide for skilled nursing care for those “at need” in order for a state to get their federal share of $$$. By & large that means care in a NH. NH = skilled nursing care. Feds give states specific $ for Skilled based on a formula. Feds give allocated dollars.

States do not have to pay for AL as it’s not skilled care. But states can submit to the feds a request to divert some of the set aside skilled funding to become available to pay for AL (or other community programs). It is done via a “waiver”. Waiver programs as their run by the state will vary from state to state and will have a set timeframe in which they divert $ and will need to be reapplied for. Waivers can partner with grants or other funding; this is what PACE & blind programs tend do with a non profit. Waiver programs can stop or change or be phased out or have a very limited enrollment, etc. just as long as within overall federal guidelines.

Waivers usually touted as being cost effective. They can be but you have to have folks that want to participate in the waiver. For AL’s participating in a waiver that might end or could change eligibility or change funding may not be worth ever doing if the AL can just as easily fill rooms with private pay residents. Or an AL participates but only for a few beds; it’s one of the reasons why you hear that the AL requires a couple of years of private pay before a Medicaid bed is ever available..... AL know high probability that a resident will need a NH before 2 or 3 private pay years end, or move, or die, so there’s a likelihood of a Medicaid bed opening up.

There are all sorts of health care waiver programs done, not just for elderly. Most are for childhood diseases / disability and the blind.
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Thanks igloo. You don’t know how much it means that you took time to break it down for me. Dads only 43 and I’m 21.. never in my life did I think I’d be dealing with anything of this nature at my age. I never thought my dad would end up in this position but now that we are here I’m just trying to keep my composure and do everything in my ability to make sure he has what he needs and deserves. I hope we are able to resolve all of this very soon.. I really appreciate your help.
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Medicare for esrd should start on the 1st day of the 3rd or 4th full month after he has started a set dialysis program. Medicaid was used to bridge till that happened. I’d suggest you google to as they have a ton of articles on info from CMS (centers for Medicare & Medicaid) that is written that’s concise and short topic for regular folks.

Esrd has this 30 month coordination of benefits which seems to have what I think of a interlocking puzzle type of review.... so if dad was disabled first then got esrd it’s one path as to how the 30 month time clock starts vs. someone who had a job with group health insurance and then gets esrd has thier 3o mo start. It seems crazy but it’s all about sharing insurance risk. AND if he has enough secondary issues he could instead of getting a gap or Advantage plan be eligible to be a “dual”, which means he gets both Medicare and Medicaid. 

If your calling NM Medicaid, issue is imho is that they are answering all sorts of ?s from I’ve lost my SNAP card to where do I pick up a breastfeeding pump to more complex situations like your dads so it’s a new page each time. They hear SSDI and his age and Medicare just doesn’t immediately seem to be an option but Medicaid does. Important part is he’s got you as his advocate and he’s now on Medicare and you need to figure out what works best..... Supplement aka a gap plan or Advantage or being “dual”. Really talk with others in the esrd family as they can shed light as to which is better or if they were able to be a “dual” how that was done. Advantage can seem cheaper but you have to use the MD, clinics, that are in the Advantage network. If you go outside network, very expensive. If Advantage guys are all in Albuquerque but dads in T or C lotta good that’s gonna do.

Really his being on Medicare is going to work as medicare has benefits system & payments set up to do ESRD. The biggest benefit to Medicare is say dad can get a transplant and he needs to go to Houston to get it & be there for aftercare. He’s on Medicare. It’s federal and he can cross state line to get any medical care as long as they take Medicare. If it was just medicaid, it doesn’t cross state lines. If it’s likely he’s transplant list, try to ask what plan is one that good in lots of places. Really talk with other families, the dialysis folks, the organizations, as they’ve been down this road.

Your not alone. Speaking of alone, there may a suggestion of dad to get onto home-based dialysis. I’d encourage you NOT to do this at least not for a bit. Getting out and around others facing esrd both for you, dad, your family will be a good thing and you’ll find a support group. He’ll get much better in a few months and you can re-evaluate in home dialysis then. Best of luck.
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Wow igloo572 your answer has by far been the MOST helpful I have received in regards to anything we’ve dealt with so far. Nobody, not even Medicaid reps have been able to provide us with any of this information. You state that he is not eligible for a Medicaid waiver, I wonder why the reps I’ve spoken to every time I call in regards to updated info on his case have never mentioned that to me.. would have saved a lot of time. As for Medicare, he has original Medicare and he is working with his case worker at dialysis to get enrolled into an advantage plan I believe it is that will be covered completely through the kidney foundation. I’ve spoken with a couple of family members of other dialysis patients at my dads center and a couple of them have told me that although it was a hassle they were able to get their loved one the home care services I am trying so hard to get back for my dad. So I’m a bit confused, not sure how they went about that being that you say he isn’t eligible for Medicaid, which provides those services. So stressful! But I am taking everything day by day and making as many phone calls and appointments as I can to see what we can do for him. I hope we get this resolved soon. I also hope that my response makes sense lol.
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Not going to qualify for a Medicaid waiver as he’s ESRD. Medicaid was done basically only to cover the limited period of time till he cleared eligibility and then went into Medicare. Esrd means Medicare.

Imo problem is type of Medicare he has isn’t suitable for his needs as a renal patient with the health care providers he is using.

His Medicare is it Original or Advantage?
If Original, did get get a supplemental (gap) plan? It sounds like there’s not one. If not, why not? You kinda have to have a gap imo if on Original. 
If he did and doesn't work for his type of care, I’d talk with other family’s you meet at dialysis, etc. to see which Gap they buy. And try to switch plans. He may have to wait till open enrollment. 

If Advantage, why was this plan chosen?
Was it considered his “one time” Advantage choice? 
Advantage plans seem to be better choice for the aging but healthier population. Unless you live in a very competitive health care market. That would be like Boston, SF, Houston, not anywhere New Mexico, sadly.

ESRD like Parkinson’s & ALS is one of the few diseases that can actually get Medicare before the standard Medicare age 65. It should be better coverage but his original/ gap combo or the Advantage needs to work for the providers availability to where you live. I’d bet he’s seeing out of network docs, labs, etc. &  if so the costs will be hugely different than in network. You have to clearly ask when booking appointments, etc.

Trying to get a waiver imo is a waste of your energy. Better use of time probably is to in detail compare gap & Advantage plans and provider coverage for where you live and get him switched onto it. 
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