If anyone's to blame, it's the health care system that didn't provide him with more than just a great-grandmother to take care of him. He needed some sort of live-in care, because one older woman simply can't handle the daunting task of caring for a boy with autism, Tourette's, etc. Therein lies the tragedy....
I don't know this family's situation, but I have found out the hard way that for the middle class,
there is no safety net.My wife and I are parents of a wonderful 7-year-old with DiGeorge Syndrome, aka velocardiofacial syndrome (22q11.2 genetic deletion). He's immune deficient, mentally sharp but physically delayed (significant gross and fine motor delay, can't eat food, can't speak intelligibly), has had two open heart surgeries, seven angioplasties, a Ladd procedure for malrotation of the bowel, and is classified by SSI as disabled. We've paid, oh, $50,000 or more out of pocket so far, and have been teetering on the edge of bankruptcy off and on for years. There are therapies he needs (intensive feeding therapy, intensive PT, OT) that he is getting only intermittently or not at all because we can't afford it.
But guess what--as sick as he is,
we can't get Medicaid. We're over the income limit for regular medicaid (they don't take medical and insurance expenses into account unless they exceed 40 or 60 percent of your monthly income), he's not sick
enough for CAP-C (denied), and we just got denied a
second time for CAP MR-DD (he's not disabled enough, since he can "only" not speak, not eat, has the physical strength and coordination of a 4 year old, and can only attend school an hour or two a day--so he's perfectly fine, can't have medicaid helping kids like him, after all). And, his determination as SSI disabled doesn't count because we're over the income limits--again, gross income only, no expenditures considered--so no SSI disability benefits either. Hospital/doctor bill writeoffs or reduced cost care? For the most part, it's sorry, we are "too rich" (again, gross income based). There are some wonderful social workers in his life who have helped him get a mentor (2-4 hours/wk) and have helped us a couple of times with his nutritional formula and other supplies, and I have wonderful coworkers and family who have pitched in thousands of dollars at a time to keep us out of bankruptcy, but in the long run it looks pretty bleak.
IF I took a job as a janitor, gave up the house and both old vehicles (which we need), and lived in a cardboard box for six months, we could qualify for Medicaid even if he were perfectly healthy (oh, he has a runny nose, here's some medicine, no copay). But as it is, we have so far not qualified even with a chronically ill child who desperately needs more than he's getting.
(Our CAP-MR/DD appeal hearing is set for January, so my fingers are crossed, and I'm hoping they'll reverse the denial and I'll be forced to take the above rant back. I hope.)
Our son isn't autistic, but families of special-needs kids generally have one thing in common, and that is parents that are stretched far beyond their physical and emotional limits on an almost daily basis, and still manage to juggle everything and stay more or less on course. I can't imagine what the family in the OP must be going through over this episode. Sad.
Edited to add:
My son at the cardiologist. He's a trooper (and a very cheerful kid). :)