05-02-2018, 01:04 PM
(This post was last modified: 05-02-2018, 01:11 PM by Fats Drywaller.)
RE: Brand New Here
(05-02-2018, 09:30 AM)Punky Wrote: Since he lost his job, lost his (our medical insurance) which they wouldn't pay for a machine anyway.. Im am so distraught trying to find him a AVS machine.
Are there foundations or even medical suppliers who would donate machines?
Or if anyone can give me any advice , I sure can use all the help right now.
Hi, Punky. I can't resist jumping in to offer some advice, even though I'm a newbie to CPAP myself. The reason is that this is not medical or therapeutic advice as such; I'm not, and never will be, qualified to offer that. It's what I'll call operational advice. (Buying machines, and finding good deals on them, is part of that also. Finding a good deal means, by definition, first avoiding using a Durable Medical Equipment provider, or DME. It's unfortunate, but that's just how it works. The price markups by the DMEs are astronomical, and that's because those outfits deal with insurance companies & HMOs as their customers 99% of the time. It's called "what the market will bear", and those companies have deep pockets. At the other end of the spectrum, buying a CPAP machine on one's own should actually be done, believe it or not, pretty much as if one were buying, for instance, a microwave oven or a TV: find out exactly what make & model you need, then find a retailer that offers low prices or good customer service or both.)
OK, apart from the machines-and-DME questions:
Losing the job+insurance package of goodies is a huge body blow. It can be fatal (figuratively if not literally: at least to one's confidence, self-respect, etc.) if you let it, but you don't have to let it. I've been there (although in different circumstances, not as dire), and there are two points that I want to mention.
First, there are experts here who can and will help you and your husband get started and continue indefinitely with the CPAP (ASV in his case) therapy at home. I mean, of course the therapy is always at home, but most patients also go back and forth to a specialist doctor at a sleep clinic, at least for a while. It's not kosher for anyone to state in public, as a recommended course of action, that it's quite possible for a CPAP patient to get along very well with the therapy and various tweaks and adjustments and fine-tuning to it, with the help of the experts in these discussion groups here, thereby making it quite feasible for that patient to say buh-bye to the local in-person doctors and therapists and clinics, and thereby obviously saving the patient a large bundle of out-of-pocket expenses when he or she is not covered by insurance. So I won't recommend that; it wouldn't be right. I will say that just by reading back in some of the threads in this forum lately, I can see that the old-timers here, super-experienced (I mean actual experts on the subject, not just patients although they are that too), have helped out many apnea patients who have come here badly needing expert advice to make their therapy more effective, and even needing help to get started with it. You are definitely in the right place.
You have the diagnosis and prescription, which is the essential first step. The ASV machine is, as C.N. said, unfortunately the most expensive type, the top of the line. But if you can bear that financial burden, and find the right mask after browsing & asking & discussing here (and typically that's only about a $100 item, sometimes less, when you buy it retail from an online supplier; the costs that are quoted by the DMEs & insurance companies & HMOs & Medicare are artificially inflated), then you're over the hump and you can continue with the therapy with minimal further expenses on equipment; just minor replacement supplies like mask parts and hoses and air filters.
OK, on to my second point, and it's a biggie. Because of obvious privacy concerns, I'm not going to ask any questions or suggest a discussion of this with case-by-case specifics. I just want to say, in the hope that you can use this, that for those in the U.S. who are "economically disadvantaged", as it's called (also known as being poor), and who need medical treatment and/or monitoring (along with devices, supplies, etc.), Medicaid basically works (who'd a thunk it?), sometimes, for some patients, depending partly on the phase of the moon, even though it has a bad reputation (which is quite often not deserved) for various nasty & unmentionable political reasons going back to the 1960s and, as we know, continuing to the present day.
Medicaid is also closely linked to SSI and SSDI, the two Social Security Administration programs for disabled folks. SSDI is for those workers who are coming off of employment (probably permanently, and probably but not necessarily late in life) due to a serious physical or mental disability. SSI is a mostly equivalent program, although with lower payments, for disabled folks who don't have enough work history (who haven't "paid in" to the system for long enough) to qualify for SSDI. With a recent and extensive-enough work history followed by getting on SSDI, the insurance for poor disabled folks is one special sub-program of Medicare (yes, MediCARE; the determinant here is being on SSDI); or with no work history followed by getting on SSI, it's strictly Medicaid instead, and Medicare is out of the picture regardless of age. In fact, every SSI recipient is automatically qualified for Medicaid, because at that point (when one is beginning to receive SSI) the determinations of both disability and poverty have already been done by the bureaucrats. SSI recipients also automatically qualify for food stamps (SNAP), which could be a biggie depending on the family's circumstances, and for Section 8 housing vouchers, which are generally worthless although I guess there could be exceptions even at this late date (but I doubt it).
The catch-22 for all of this is that you really have to be quite poor, if not downright destitute, to get on Medicaid or SSI or both. For instance, for SSI, the limit is $2,000 in liquid assets (bank accounts, etc.), plus a house or a condo (if not renting) and a motor vehicle; the primary dwelling (if owned) and motor vehicle are exempt. That's a federal program and it's the same in all states. Medicaid has requirements that differ from one state to another (some states have no means tests for Medicaid), so it's necessary to do a lot of research on the good old Innertubes to come up with the documents and forms and manuals-for-patients and FAQs and so on that are specific to your state, and take it from there.
If you apply for either or both of those programs, you have to be super-persistent and never take No for an answer, always try to find another way in by hook or by crook, because it's likely that the case-workers and other bureaucrats will try to discourage you and disqualify you at just about every step of the way. That's part of their job, although of course that part is never admitted to publicly by any of those agencies. But fortunately, it's not nearly as bad as the remnants of the old 1960s welfare programs for women & kids (now called TANF, which stands for "torment and abuse needly families"), in which the attempted discouragement and demoralization are extreme and cruel. With SSI and Medicaid, or with SSDI and Medicare, there is an implicit although grudging admission that, well, OK, I guess these are some of the deserving poor who really need medical help and financial assistance and who aren't trying to scam the system. The good news is that we're past the Reagan years (Reagan notoriously tried to throw a large number of SSI recipients out of that program for no reason whatsoever except willful cruelty, and he succeeded in that for a short time). The bad news is that, quite obviously at the moment, something like Reagan's purge or much worse could easily happen again. In fact, it is happening, I'm sorry (and infuriated) to say, with Medicaid "work requirements". However, that sort of purge obviously has to exempt disabled folks and those over retirement age, so SSI or SSDI is the ticket there.
OK, getting back to practicalities: Fortunately, there is a good book that can help you. I just happened to find this by accident recently, and it's both fascinating and very useful to anyone in that kind of situation. The book is Trapped in America's Safety Net: One Family's Struggle by Andrea Louise Campbell, 2014, published by the University of Chicago Press, 194 pages, paperback. You could borrow it through Interlibrary Loan at your local public library, but if you're in a hurry to read it, Amazon has it for $13. I highly recommend it, especially to someone in your situation. The family that it discusses as a case study was in California, so there are some differences between that set of bureaucratic hassles and yours, but it's still pretty much an essential handbook for anyone who is negotiating through that maze for the first time. The reason she wrote the book is that her brother and his wife were blue-collar or lower-middle-class, whichever (distinctions don't matter here), but a bad car crash seriously injured the wife and put her in a wheelchair permanently. They weren't anywhere near rich enough to afford the expenses (medical bills, a wheelchair van, etc.), so they were forced by the circumstances to go on SSI and Medicaid. So far, no big deal, right? A minor success story, or at least a bouncing back from serious adversity? However, it turns out that being completely reliant on Medicaid forces a family to stay in poverty indefinitely or else lose the benefits. And that's what the book is mostly about: negotiating that bureaucratic maze while trying to preserve some dignity and some remnants of a middle-class existence. Thus the "Trapped" of the title.
OK, enough babble from me for now, except to say, just to establish my credentials for giving advice on such stuff, that I'm one of those dirt-poor folks on Medicaid for whom that is the only possible medical insurance. In my case, I'm lucky that being forced to stay in poverty indefnitely is no big deal, mainly because I have no dependents and partly because I was already there for a while anyway, beforehand, and I know that it can be, depending entirely on individual circumstances, not as bad as it sounds.
Good luck, but more than that, if you decide to apply for the safety-net programs, you and your husband will need perseverance and guts. Don't let the bastards grind you down.
