I usually don’t use this blog for venting, but I had to get this out before it choked me. I only put it here because I know a lot of you are struggling with the diagnoses your children have and with medical agencies/personnel, and this has a lot to do with those issues. I thought venting about what’s happened to us might show you that you are not alone in your frustrations!
I used to work for a nonprofit agency. We worked with the mentally ill (my department was responsible for the criminally insane and incompetent to proceed to trial felons), and we were funded through our local DCF office. We had to account for everything we did through activity logs, and each action we completed had a different code attached to it. There were all sorts of codes for client care, and there was even one for administration duties. We couldn’t bill outright for those, but we had to have one for things like paperwork and certain other non-direct client work.
I’ll get to the point in a minute, but I also want to add this: It’s no secret that The Older has been diagnosed with a few challenging disorders recently, both physical and mental. I’ve been working very hard at keeping things in order, making the right decisions, and doing everything by the book so that he doesn’t have to suffer the ill-effects of anything. He has a pulmonologist, a neurologist, an audiologist, and soon a speech therapist. He wears hearing aids. He has to take 3 different medications every day, and he has to see at least 3 different doctors a month. There is unyielding paperwork to fill out, calls to make, appointments to drive to, and specialists he has to see both in and out of school. He has handled it all wonderfully, and I think The Daddy and I have been doing a great job keeping communication between us, the school, and all his doctors open and honest. There are a lot of days that we all want to throw up our hands and say “screw it all!” but we don’t because it isn’t an option. We continue forward because this is the life we have, and we will get through all off its complexity as a family, tears and all.
Anyway, I was told about a great subcategory to Medicaid in November, and I jumped at the chance to get The Older assigned. Basically there are a group of ‘approved physicians’ in this group, and each child is assigned a nurse care coordinator. They are your ‘go to’ guy in this maze of health care, and you call them with questions or if you think something should be getting done that isn’t. You can, I’m sure, understand why I was so excited about this, right? Someone to help me keep everything organized and someone medically trained who could give me advice and suggestions? SIGN US UP! I ran around to get paperwork, fill it out, get it to them in time for the next month’s enrollment, and then called to follow up daily. I was thrilled when we were approved for December, and I was finally able to breathe a bit easier.
Until January anyway, because as of January 1st, the State dropped The Older from Medicaid. I was given little notice, and I was frantic because we’re talking thousands of dollars a month sometimes that our guy needs in the form of therapy and doctors and such! This meant getting him approved for the State health care, and you can’t apply for that until your child isn’t covered by insurance. So, that’s a minimum month of no coverage.
But, that isn’t even what upset me. What absolutely makes my gut churn are these “professionals” who claim to love children and want the best for them, who sit there and hug you while you cry and promise they will do anything they can for your child… But they fail to mention that it’s only if they can bill your insurance ! If they can’t, they basically forget your child even existed, let alone sat in their office for hours at a time and grew to trust them because they promised they would make their lives better. They can’t even bother with a phone call to let you know they’re aware of what happened and ask if there’s anything you need from them. I called and emailed just about every person who claimed to be “invested” in my son, and not one person bothered to get back to me. No one returned my call when I left a message begging for help because I was so lost, and not one “professional” bothered to contact me to see if there was anything that could be done in the meantime so that The Older didn’t get confused or behind with his therapy, or suffered from not being medicated. You know who did call me? Office staff to tell me that since they ran his Medicaid for his upcoming appointment and saw it was discontinued, they went ahead and cancelled his appointment because they were sure that I didn’t want to just reschedule seeing as there was no upcoming insurance for him.
I can’t even begin to describe how repulsed I am by all of this. When I was working, even if something was ‘non-billable,’ I made calls to people who left me messages about their families. I made calls after cases were closed if people had questions, and I made damn sure all of my clients were taken care of before I closed their cases at all, even if it was on my own time! The fact that these people can just ignore someone who is in need, let alone when that person is a child , makes it hard for me to see them as professionals, let alone human beings. The fact they can just close his file and see him as a “non-billable consumer of care” makes me nauseous. Thankfully we pulled through and made sure The Older was taken care of and got what he needed, but the fact remains that I am beyond disappointed by these people that I trusted with something more precious to me than my own life. They failed . Horribly.
Of course now comes the question of how on earth I am going to continue a working relationship with these doctors. I have to for The Older’s sake because, like it or not, they’ve been there since the beginning and really are the best in their fields, but I am so furious that I worry about how I’m going to handle it all. Mostly with the nurse coordinator I fear, because to me she’s the most despicable of them all…