A family's story

Not without a Fight

This week the interwebz were abuzz with the whole DSM-V changes and autism hearings in DC. When media covers “the plight” of parents of special needs kids, they should focus on the insurance hullabaloo that we parents face. This frustrating, red-tape tango-ing, bureaucratic baloney that stresses us out. If we find something that works for our child, helps him or her succeed in life, why do they have to put a limit on it? A cap? This, this insurance baloney is the “burden” we have to deal with. This part of it is what makes parenting so damn hard. For as long as I can recall, there has been a rumbling, an effort, an objective out there, somewhere, for improved health insurance. Insurance reform is a hot topic. Currently, insurance coverage is a big deal in our house, as well.  Hubz carries some good coverage. We pay a lot for it, more than I think is necessary, but that’s another topic for another day. We’ve never really had to worry about a procedure, evaluation, or therapy not being covered. I know how blessed we are. Because of our plan, Tate’s therapies aren’t capped at “x visits per year”. Instead, we pay a slightly higher deductible and have slightly higher out of pocket maximums, but he is able to see his therapists regularly, and we never have to budget out the visits.

The plan has decent coverage of ABA therapy. We’re some of the lucky ones–I know some plans won’t cover it at all. ABA has been successful in helping Tate learn skills that he otherwise wouldn’t have learned. He has benefited from the one-on-one setting, at our home. He has breezed through several programs. He is mastering programs that we were weary about him being able to handle. He is moving mountains every day.

Getting ABA covered wasn’t easy. They made us jump through numerous hoops. I was on the phone several hours. Hubz was emailing and talking to HR representatives. At first we were denied coverage because the autism diagnosis hadn’t cleared. Then we were denied because the doctor didn’t write specific hours as a prescription. Then, it was denied because the plan stated therapy could only be delivered by a BCBA…not a behavior specialist (someone studying for their BCBA). Hubz got them to change the plan to include behavior specialists, because the reality is that BCBA’s are completely outnumbered. Then he was denied because it was a full moon. (I jest…I jest..) But, he was denied a few extra times…or the therapist was denied a few times due to some coding issue. Eventually, after several stressful days, weeks, months, we got Tate paired with an ABA therapy team. SUCCESS!!

However…however….the plan only covers ABA therapy until age 7. AGE SEVEN. Because, apparently, in health-insurance-land, where puppy dogs and rainbows rule, autistic children suddenly no longer have deficits in language, social skills, fine motor, gross motor, visual motor, and play skills once they hit age seven. For those who are counting, Tate turns the magical age of 7 in April 2013. We have 4 months of therapy left. FOUR FREAKING MONTHS. Hubz started emailing and leaving messages for HR reps back in October, at the 6 month mark. We’re trying to start the process for getting an exception. See,when we started out on the ABA journey, the HR rep that Hubz spoke to told him that the plan only covers to age 7, but individual exceptions can be made…and if our son was still progressing and benefiting from ABA, they could make an exception if we filled out the appropriate paperwork, and had his therapists and director of therapy fill out proper paperwork. And, I’m sure, his neuropsychologist. So, we’ve started the hoop jumping…again.

The original HR rep was no longer with the company. He got passed along to someone else…someone who when we started out trying to get ABA covered for Tate, passed Hubz around like a hot potato. This HR rep doesn’t answer emails. Doesn’t answer phone messages. It’s getting pretty ugly. Hubz has followed up twice now…to no avail. He is leaving one more email and one more message, letting the HR rep that the director will be involved ASAP. This is just ridiculous.

We fought too long and too hard to get Tate into ABA therapy. He has come so far…progressed in so many areas…developed skills that we were told were not likely…in just 18 months. Our son is amazing, nothing short of that. Ahhh-may-zing. He works his butt off. He is in therapy several hours a week to learn skills that come naturally to all of his NT peers. Yet, he doesn’t complain. He goes to every session. He fights it, at times, but he gets it done. And in getting it done, Tate has blossomed. He has functional speech. He is starting to play WITH people. He is starting to respond to non-immediate-family statements and questions. He is expressing feelings occasionally. His anxiety has decreased in some areas of his life.

It shouldn’t be this hard…keeping my son in a therapy that is helping him succeed. I am anxious. I am nervous that we’ll be told “no”. I am worried that he’ll regress. I am beside myself with guilt that we didn’t get him diagnosed earlier..and started in ABA at a younger age…But I can’t let that slow me down. I will channel all of the angst, anxiety, frustration and anger to fight with every. freaking. ounce I’ve got to at least say we didn’t go down without a good last stand. My son, my intelligent, witty, fun-loving son deserves no less. We will fight with all we’ve got to get our kid the help he needs, nay, deserves, in order to succeed in life.



Comments on: "Not without a Fight" (2)

  1. Brooke Graphia said:

    Praying you make it work!Insurance is a NIGHTMARE for everyone

  2. You really are incredibly organized and on top of everything you need. Here in California, I cannot subject the claims for coverage of my son’s ABA. The law requiring insurers to cover ABA was just enacted last July and our carrier has subcontracted the handling of claims to a third party who has not cleared “authorized providers” at this point and is low-balling our provider (and all others) into accepting half the price it costs to run the businesses. We are fighting the school district over paying for part of the ABA and our regional centers (local California funding of ABA outside school hours) have cut back funding until we have insurance denial letters but the insurance companies leave us in limbo as they determine who and what will be covered. Meanwhile, I’ve started receiving personal bills for ABA hours.

    Trust me, you are blessed. I’m certain I will be having problems continuing funding and programs through the time my own son turns 7 and heads toward summer and 2nd grade! Yikes – I just want to get through Christmas break!! We need to enjoy every moment but with all we face, we do have to worry about our children’s future before it gets here. Sigh. I guess that’s why we’re special parents, right? Sending hugs your way.

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