Sproglet's pediatrician, being the all knowing, wonderful person that she is, referred us for Early Intervention very early in Sproglet's life. I believe it was her three-month check up. We didn't have a diagnosis yet, but were in the early stages of testing for a genetic abnormality. Dr. R asked how I'd feel about starting her in Occupational Therapy- not that she was worried per se, but just based on the belief that it couldn't hurt. If it turned out she needed it, then great, we were ahead of the curve.
Great, I thought. So we started intake with an Early Intervention company near us. I had no idea what to expect, but I can tell you that I never dreamed so much GOOD would come from this one little referral.
Sproglet underwent an evaluation, and was accepted into Early Intervention. In our state, every child who qualifies for EI receives it free of charge until the age of three. She was scheduled for Occupational Therapy, and after a month or so, we got to meet her therapist and Sproglet got to work.
I have to laugh when I look back on those early days. Especially when they'd ask me what goals I had in mind for Sproglet. I didn't have a clue what to tell them! She was undiagnosed, so I couldn't point to typical delays that 9p kids experience, nor did I really know what OT was until her therapist explained it to me.
Basically OTs work with people (infants to adults) to identify ways to improve their conditions. Sproglet, we know, had a lot of motor and muscle delays that needed to be attended to, and her therapist would work one on one with her to develop a treatment plan. For example, at 9.5 months, Sproglet should be getting close to sitting up on her own, or crawling. In reality, she's nowhere near these points. She can sit up for short periods of time with support, but tires quickly, and she doesn't have the core strength to hold herself up on her knees in order to crawl. So the OT works with her to strengthen those muscle groups- and shows us, her parents, as well as her Day Care teachers, how to help her build those foundations. This woman, who can't be more than a few years out of college, is excellent. Always trying different things to see what works best for Sproggy, giving us pointers. Oh and she's an incredible cheerleader, genuinely thrilled whenever Sproglet develops a new skill. It's just awesome to watch.
Now that we have a diagnosis of T9p, and we know that many people with the condition struggle with communication, we have also added a Speech Therapist to the team. While of course a 9.5 month old isn't going to be speaking words, she works with Sproglet on communication- baby sign language and the like. She is also a great support for both Sproggy and myself. I get texts from her and the OT all the time, asking how things are going and if we need anything. They're great.
Now, for US. We have also been invited to take part in a Parents' Group that meets monthly- for parents of kids with special needs who are involved in EI. Let me tell you, the feeling of being in a room full of parents who, while they all have totally different experiences, just simply understand the issues that Special Needs families face- man, it's incredible. I've cried with these people, fumed with them, laughed and celebrated. I mean, you try to explain what it's like to have your life revolve around a child who needs constant supervision and medical care to someone who's never had to deal with it.... it can be really frustrating. Not that I'm looking for sympathy, but the fact is that everything- everything- in my life now has to take a back seat to ensuring her care. And as such, other important matters, such as work, need to be reorganized.
I had a coworker complain that I was on the phone on non-work related issues a few weeks ago. What I couldn't explain to him was that Sproglet's medicaid had been cancelled (for reasons still unknown), and we were therefore receiving medical bills to the tune of $12,000 . And those bills would be growing! Yes, we have really good primary insurance, but apparently when so many bills get submitted to your insurance company, they just say "nope" and the bills get redirected to you. Oh and we were receiving calls from Collections Agencies threatening lawsuits if the bills weren't paid.
Sproglet has a Disability Supplement, which means that, in Massachusetts anyway, she will always, always have insurance through the state (we hope, anyway). She has so many complex needs that Medicaid supplements a huge amount of her insurance. I am eternally grateful for this, and until now, I'd never understood how a family with insurance could go broke due to medical bills. And there are people who have much more difficult medical issues than we do...Its amazing how quickly it all adds up.
Anyway, due to a paperwork misfiling, Sproglet's Medicaid had been cancelled. That meant we were on the hook for: every co pay for every doctor we were scheduled to see ($30 a pop, and when you see four doctors a week, that adds up), her formula ($50 per can, at 2-3 cans per week), her medical equipment (a ventilator to treat her respiratory infections), AND her Early Intervention.
So, yes, unfortunately the Insurance Office has the same working hours as I do. I would be placed on hold waiting for the next available agent and do my work- but basically be tied to my desk. I couldn't really schedule meetings or interviews until I was able to get a hold of someone who could get the policy reinstated. In all, this took roughly 5 full days to get sorted out. That's a lot of time for a working professional.
The good news is that the policy was fixed and reinstated... but we'd already paid a LOT of money up front for the Co-Pays (hospital policy requires payment upon service) and we will not see that money reimbursed.
Am I complaining? Well, yes, I am. Sometimes I have to vent a little.
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