Monday, September 3, 2012

Publically funded vs. public, II

I can't imagine what it would be like to be regularly dependent on state welfare agencies for securing basic needs. My one entanglement with a state welfare agency pertains to J's Medicaid benefits, an annual nuisance that involves enough Kafkaesque burden and potential menace to make me wish I could somehow pay someone enough money to opt out of the system entirely.

J needs Medicaid benefits for one reason: they pay for the one-to-one aide that makes it possible for him to attend regular public school classes. Currently in PA, such one-to-one aides (Therapeutic Support Staff, or tss) are funded primarily through Medicaid and not through the schools. And, so long as a child has a major disability, he or she automatically qualifies for Medicaid funding--independent of parent income, insurance, and other financial and familial circumstances. Nonetheless, the annual, one-size-fits-all, multi-page renewal form requires us to fill out detailed information about income, insurance, property, the birthdates and marital statuses of everyone in the family, etc., etc., and track down paystubs and other documentation. The whole process takes a couple of hours, and yet all that matters is J's unchanging diagnoses and his rights to a free and appropriate public education.

This year I completed the form several weeks early, back in June, and felt the annual lifting of weight from my shoulders as I handed the fat envelope to the postal clerk and walked back home from the Post Office.  Two months later--last week--there appeared in our mail pile a notice from the county welfare agency stating that J no longer qualified for Medicaid. The reason: "Failure to turn in the renewal form."

It was now two weeks before the start of the school year. I was stuck. My complacency had grown over the years, and I hadn't used a return receipt or certified mail. I had no way to prove them wrong. And, of course, it went without saying that I was guilty until proven innocent.

Luckily the denial of services mailing included a mercifully short appeals form. I filled that out immediately, walked over to the P.O., and sent it by certified mail. I then tried to track down a new renewal form online, which took a while, and the form I found, though it was clearly marked as appropriate for PA Medicaid renewal, was even more extensive than the original. What with reading and rereading all the new fine print and filling out all the additional information--and tracking down all the backup documentation--and double and triple-checking all my entries, it took me about 3 hours to fill everything out. Not counting the time it took me to photocopy everything and return to the P.O. once again and sent it by certified mail.

In the course of all this I called up the county welfare office multiple times. What with cordless speaker phone technology, being on hold isn't nearly so bad as it used to be. You just have to tolerate the Musak and repeated recorded interruptions about your call being answered "in the order in which it was received," and remain "on call" for whenever a human being finally picks up.  Because of that, phone queues are probably fuller than ever with people patiently waiting it out--beyond the capacity of the more dysfunctional agencies, as it turns out. So Things Bite Back. After a minute or two in a modern-day PA welfare office phone queue, an automatic recording comes on and tells you that they're experiencing "an unusual high call volume" right now, invites you to call up later, and disconnects the call.

This, of course, is a lot more likely to happen with "public" agencies--monopolistic and often under-funded. Imagine if there were multiple Medicaid renewal agencies all competing with one another for people's patronage. Then the last thing they'd do is misplace our forms and hang up on us when we called them.

But I'm afraid this is a fantasy up there with true school choice.

Meanwhile I can't help stressing out about worst case scenarios. What's to stop Them from continuing to lose forms? What's to stop Them from cutting off his benefits as soon as school starts?

J saw how upset I was and asked why. I explained what had happened. J, who'd rather not have a tss, and who's finally showing a few inklings of sympathy, tried to reassure me.  "I can behave without a tss."; "I can focus without a tss."

"Can you avoid getting into fights with classmates?"

I think he can-almost. It sure is tempting to hope so. He's traveled a huge distance since he started school--largely thanks to ongoing tss support. But, mixing metaphors, we're on shaky ground here, and if the rug is yanked out too suddenly from under our feet, things could easily spiral out of control.

In my fantasy world, not only are there school choice and truly public welfare agencies, but also childhood disability insurance for expectant parents. No prospective parent knows what the future holds, and the future is often scary. Wouldn't it be nice if one could insure oneself at least against the financial costs having a disabled child?

Though it's too late for me, I grew curious after last week's debacle. I went online and searched for sites containing "childhood," "disability," "insurance," and "pregnancy." I visited site after site, and ultimately came up dry. It would seem that, at least for now, all of us disability parents--like disabled adults and others in challenging situations--are stuck with what our "public" agencies are able and willing to provide.


FedUpMom said...

Katharine, please check your gmail. Thanks!

Happy Elf Mom said...

That's amazing that medicaid will pay for stuff in schools there. Here, it does not. But also here, you can own a $1000 car and be homeless with no income and STILL not qualify for medicaid. And yeah they use the parents' income to determine eligibility.


Anonymous said...

In Texas the school sends home a form for Medicaid reimbursement, but if the parents don't fill it out, the school is out of luck. Because in the end, the school is required to provide a FAPE, and an aide may be a part of that. I thought IDEA applied to all states.