How The System Works

Every so often, and I do mean often, some well-intentioned person will say to me something like “there ought to be more help for you out there, Diane” or “I know someone who gets xyz help/services, can’t you get the same?” And you know, I used to think that too, when I was naive, before we got caught in the "system", as it were. I used to think there was "help" somewhere "out there" for people like us.

Jenn’s comment (a few posts down) about respite rather reminded me of this, and thank you, Jenn, I know you are only trying to help, but I checked out the link you provided but found nothing there but a bunch of programs I already know about and that Bob doesn’t "qualify" for and some very nice “affordable” agencies that I could hire, if I had the money.

The key word here is “qualify” and every state-run, federal-run, not-for-profit agency (and believe me, I've been everywhere checking this out) has “eligibility criteria” and one must “qualify” for their programs. The criteria are more often than not based on age and/or income. Although some programs have disease-specific criteria, i.e. you have to have X disease to qualify, for example, there are programs for folks with Alzheimer's, Parkinson's and AIDS to name a few. 

Just try finding help when your husband is a 52-year-old stroke survivor who gets $1363/month in social security disability. He’s too young for the elder care programs, too old for the children’s programs, he’s not a “dependent adult child” living with a parent and he makes “too much money” for pretty much everything else including SSI and Medicaid (the income limit for these programs is $1,011/month). And as for ‘disease specific”, well, he doesn’t have the "right" disease.  Once I did find an agency which specialized in helping folks with CIDP, and so I applied for Bob but he was turned down because his doctor had prescribed “gammagard” and not “gammunex” for his treatment and that agency had a “drug specific” criteria…..

I suppose there are some “lucky” (I use the word loosely) folks who meet the criteria of these programs, but alas, Bob is usually not one of them. He does get some help, i.e. he qualified for social security disability, for Medicare (although Medicare didn’t kick in for two years after the “disability determination date” and he has to pay a premium + pretty high co-pays for that), for “Medically Needy/Share of Cost” which is a program through Medicaid (his share of cost is $719.00/month meaning that after he pays for the first $719 Medicaid will pick up the rest, this is per month, it doesn’t roll over into the next month). He gets “extra help with Medicare prescription drug co-pays” through the SSA and this saves us a bundle of money as he has 18 prescriptions, some of them very expensive, although it doesn’t cover the prescriptions that the insurance doesn’t cover, and we have to pay for those out-of-pocket. I applied for and we got a “disability exemption” on our property taxes. He also got a “disability discharge” on his student loan. And he gets a “lifeline” disability credit on our phone service, so that’s how we can afford the Internet! (It only costs $28/month for both Internet and phone service, a real deal, though the service is pretty basic).  And a wonderful group called CASIL (Caring and Sharing for Independent Living) paid for and installed our wheelchair ramp. So we are not without some help.

And I could, if I wanted, put Bob in a nursing home. The state would happily pay for that and I could (I understand) keep a “portion” of his disability check on top of it. I suppose this is why so many people do end up in nursing homes, because there just isn’t a lot of "help out there". But, I do think Bob’s got a better chance of recovery here at home, with me. And so far, I’ve been handling it. (With only an occasional meltdown!)

As for the “respite”, well, there is one program through the state that he does qualify for, but there is a two-year waiting list. And I believe Hospice would send a “volunteer” but this is a volunteer not a nurse and Bob really needs someone around who can change a diaper and give a tube feeding if I’m to be gone any length of time. My neighbor still comes over once a week so that I can go shopping or run errands for an hour or two and that is about as much time I feel safe leaving Bob in the hands of someone “untrained”.  So I have my “volunteer” for the moment and feel safer leaving Bob in the hands of friend instead of a stranger.

So, that’s how the system works—a bit broken, a bit lopsided and a bit better for some people than for others, the ones who fall through the cracks. Unfortunately, at least for us, I found out that Bob falls through a lot of cracks, and so, there isn't a lot of help out there.