Meandering Through the Medicaid Minefield

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!