For me, there is nothing more frustrating than dealing with bureaucracy. The endless forms and paperwork give me migraines. Gathering affidavits and official records make me want to pound my head against a wall and the countless phone calls, emails and registered mail deliveries make me want to hang myself with the offending red tape.
My son, Ben, is on the Autism Spectrum. Up until very recently, he was enrolled in a South Carolina program called “Baby Net,” an early intervention (EI) service.
Baby Net has been a lifesaver. Through them, I was able to get Ben into a series of home-based therapy programs through Bright Start — a local EI company that assessed our family’s needs, provided a case worker and performed a series of evaluations to determine how best to help my son reach his fullest potential.
Ben’s therapies were tailor made for him, and our Early Interventionist, Meagan, assisted with not only getting Ben the right fit in the right programs, but also helped me by filing much of the required paperwork on my behalf. In the ridiculously confusing world of private insurance, state run assistance programs, medicaid and Social Security disability, having Meagan around was probably the only thing that saved me from a complete mental breakdown.
But now Meagan’s gone.
Baby Net is designed to work with very young children and when Ben turned 3, he “aged out” of the program. Suddenly I found myself on my own, facing a fearsome load of paperwork for Ben’s continued care.
Monday through Friday, we have four different ABA (Applied Behavior Analysis) therapists in our home. At first the idea of having strangers in my home was uncomfortable, even intimidating, but those feelings have long since been forgotten.
I used to get up early so I could vacuum, dust and pick up toys to make sure my house was presentable to them. Now, I just Febreeze the dog and make sure everyone is wearing pants.
While we do try to maintain a professional relationship, when someone is in your home day in and day out with your child it becomes easy to start to view them as friends, even family.
When Ben aged out of Baby Net, he rolled over into something called a PDD Waiver. Don’t ask me what it stands for. At one time I knew, but that knowledge escapes me now. Basically what it does is help to cover the (substantial) costs of home based therapy.
The catch was that unless you already had “X” amount of ABA therapy in before they turn 3, you can’t roll over directly into the program. You go on a waiting list that can be as much as 2-3 years. Luckily, we covered our bases, Ben had the required amount. But that hasn’t stopped our insurance from questioning everything.
Whereas before I could rely on my trusty EI to make my claims and file paperwork, now it all falls to me. It’s a terrifying task because if I screw it up, Ben’s therapies are essentially canceled until all the paperwork is straightened out, which (and I’m not exaggerating) can take months.
Two days ago I received a letter that Ben would no longer be eligible for more than half of his services after Dec. 1 for “unspecified reasons.” I freaked and called the agency which became even more confusing when it turned out that they had no idea what I was talking about.
“It’s most likely a clerical error” is the response I get. This is the third time in six months I have received such a letter due to “clerical errors” and each one sends me into an anxiety-ridden tail-spin.
In the end, it all comes down to paperwork, paperwork, paperwork. And for someone who literally works at a paper you would think that by now, I’d be better at it. You would be wrong.
Unfortunately, there’s no cutting thorough this red tape, I know, I’ve tried. My scissors must be broken.
Kasie Strickland is a staff writer for The Easley Progress, The Pickens Sentinel and Powdersville Post and can be reached at firstname.lastname@example.org. Views expressed in this column are those of the writer only and do not represent the newspaper’s opinion.