Benefits make me a little squeamish. I’ve always thought it best to side-step the
issue whenever possible. I’m not sure, though, that when you have two children
in transition you can avoid stepping in the benefits minefield, fraught with
its complexity and controversy. Add to
that an election year when both Medicaid and Medicare could figure prominently
in the decision of who sits in the Oval Office or at a desk in the Capitol or
downtown Indy, and I figure no matter what I have to say…Boom!
So here’s a little of our tiptoe through the minefield this
summer.
Our family’s personal involvement with benefits is minimal
at best. Son FF with autism, now 18, was
diagnosed at 3 ½, but, given our income—in the Midwest we would probably be
considered mid-to upper middle class—we knew he would never qualify for federal
or state benefits to supplement his care.
We never had early intervention. We paid for additional speech services,
some OT, high school evaluations, and even his psychiatric care and medication management
out of our own pockets. None of that was
covered under my husband’s health insurance. (And I, of course, left my job to
coordinate the therapy and extra care FF needed.) That meant we struggled to
find appropriate services for him at times, because many supports and services
for families with children who have disabilities are only dealt out to those
who have Medicaid or who are on the Medicaid waiver. It meant no behavior supports at a time when
we desperately needed them.
And, oh, we sooo needed those services. So
we added ourselves to the new waiver waiting list in Illinois, and when we moved to
Indiana, we started over again at the bottom of the waiting list, which was
expected to be 10-12 years. When FF was
young, I was told at an autism conference that waivers were a way for states to
widen the net and extend needed services to middle and upper income families as
well. So, okay, I told myself, we would
wait, and when his number came up at least then he would have some supports.
We were not really worried about Medicaid in the health care
sense of the word yet for him yet. After all, thanks to the Affordable Care Act (Boom! A controversial explosion!), he
now has health care coverage under my husband’s new (much better) health plan
until he’s 26. Whew! No need to apply
for Medicaid any time soon, we thought.
So this year FF turned 18, graduated from school and applied
for Vocational Rehabilitation Services (we’ll get into that another time). It’s now pretty evident that he’ll need
extended follow-along services for employment.
Without follow-along he will only be eligible for 90 days of job
coaching services from our provider after the day he is employed. (He does,
however, have ”job seeking” services and supports while he looks for a job.)
But that’s not much for a person who struggles with emotion, frustration, and
with saying the appropriate thing. Without the right workplace supports, I have
Mom Worry that ranges from he won’t be able to stay in a job to I’ll get a call
from a police officer some day.
But, uh oh. Turns out that follow-along supports are paid
for with Medicaid funds. (Boom!) FF
needs to apply for Medicaid. Sigh. We’re not happy about having to keep him
impoverished at a time when he’s looking for a job and when he’s just beginning
to learn basic money management skills (he has a very small checking and
savings account) (Boom!). However, people with disabilities are eligible
only if their assets are less than $1,500. Go figure. “Get a job, but you can’t earn money,
FF. We know you just got a checking and
savings account so that we could teach you some independent financial skills,
but oops, that will have to wait, because now you need to be poor, maybe for
the rest of your life.” Yes, this is painful for us. But he needs the
follow-along so okay, we thought, we’ll apply.
Boom! We have a 529
educational savings plan in our name with FF as the beneficiary, making him
ineligible—that was the first ruling. We
started the 529 plan, by the way, based on recommendations we received at an
autism conference when FF was young. Particularly
because FF was high functioning and we could not predict whether he would be
able to attend college or not, a 529 plan could be used to save for college, or
if our son could not go to college, we could cash out the savings, pay the 10%
penalty, but still have the savings to use for his care—rent for an apartment
maybe, transportation needs, a personal care assistant.
Heartsick, I delivered the bad news to our provider. But meanwhile, and coincidentally, we were
contacted by the Bureau of Developmental Disability Services (BDDS). At 18, FF was now targeted for the Medicaid
waiver, specifically the Support Services Waiver (as of September 1, now the
Family Supports Waiver). This is fantastic! And, says our provider, we should check to
see if the Support Services Waiver will pay for his follow along. It might mean that all or most of his waiver
funding will need to be used on follow-along, but okay. Next day FF and I meet with BDDS. But lo and behold--Boom!--if you’ve been denied eligibility for Medicaid (because of the 529
plan), you’re also denied the waiver.
What??!! Sure enough, FF needs to also be impoverished to
qualify for waiver services. Boom! That concept of “waiver” as a wider net is
true in some states, not in others. Not
in Indiana. Indiana and many other
states adhere to what I’ve learned is the more common definition of Medicaid
waiver in which eligible families are “waiving” institutional care and opting
instead for selected community-based services that would help them care for
their loved one in their homes. The word
eligible looms large there. No Medicaid,
no waiver.
Three weeks after FSSA denied FF eligibility, though, they
phoned to say they’d changed their ruling, and that a 529 plan or Coverdell
educational savings plan held by a parent would not be counted against the
person with the disability—even if that person is the beneficiary. FSSA
suggested we reapply. Moob! (Reverse boom.) At what cost,
though? I admit to being torn. My husband, not so much. He’s pretty sure we should steer clear of
Medicaid, given that the services would be very minimal and we would be teaching
FF all the wrong financial stability lessons. Can we actually afford to find our own follow-along care and pay for it
out of pocket? I don’t know. We're on shaky ground here and choosing our next steps carefully.
Next up, Social Security.
Boom!
