Advocacy

I'm going to try to write shorter posts. Lately, probably the past couple of months, my posts have consisted of days and days of just adding to before I post. I have a list of things I want to say but only have maybe 5 or 10 minutes at a time to put them on here. So then, by the time I get everything down and publish, it's been a week or more. They probably read like a broken train of thought and maybe even redundant. And I'm not good on re-reading and editing. I just type what comes to my mind, spelling or grammer thrown out the window. It's all just goes from my brain to my fingertips.



I've been calling different people in the administration office of the attachment therapists lately. Trying to get all the stuff squared away that was unloaded on me at my last visit, that is now over a week ago. Requested detailed billing reports and those things on that issue. Talked to the Accounting Manager who just wanted me to give her my credit card number so they can set up automatic deductions to pay down my balance. Hmm. Can't do that because I live penny to penny, not just paycheck to paycheck. But I know I need to pay them something and regularly. Need more control over that. But we also need to determine what the correct balance is. What hasn't been billed properly to the insurance companies that have been covering Penelope over the last 20 months. And unfortuntely, there have been a few. But I'm not going to pay for things that the insurance is suppose to cover.



I also talked to their Quality Assurance person who has the other title of "The Client Rights Officer." That was an interesting conversation. She is the one that has made the changes to the billing codes for the neurofeedback per her self audit of their billing processes. She failed to mention that their non-profit government funding has been cut over 36%. She said that they will be billing the way it should have always been billing. I'm not saying I have an opinion on whether the billing codes were wrong or right. According to the lead therapist, the billing codes they were using were not wrong. But I'm talking to this QA person now.

I told her that I had called the insurance company who was assigned for Penelope's medicaid and even though the neurofeedback as a treatment is not covered, it can be covered 100% if it's deemed medically necessary. I even explained what neurofeedback was, gave her the codes (which I verified with her as correct) and how long Penelope has been doing it and how much it has helped her so far. This QA person said "It sounds all good but the person you spoke with probably doesn't make the determination if it's medically necessary because we have requested authorization under that premise before but have always been turned down." But she said they were willing to try. They have a standard form letter that they use (maybe it's not well written?) and once they get her information together they will submit it. But they recommend going ahead and setting up a payment plan and if it ends up being covered, they will apply what is paid to any other outstanding balances. I thought that I would take that up with the therapists at a later time. It seems too cookie-cutter of an answer to me. I asked about this $100/hour fee, explaining that Penelope doesn't have 1 whole hour of neurofeedback. The response was focusing on the fact that it won't really be $100 since they will probably have me set up based on their sliding scale based on my income. I pressed and figured out by reading between the lines that if neurofeedback is part of her therapy, then I would have to pay for the entire therapy, that none of Penelope's treatment would be covered. This essentially has to do with the billing codes again, because there is one that is solely for neurofeedback and then the other one is therapy with neurofeedback. Neither are covered codes. When I asked her if that was what she is telling me, she said "Well, it's not like she really needs neurofeedback every week. The weeks she just has straight talk therapy, that will be covered under Medicaid." She said that it's unfortunate that neurofeedback isn't covered but no one has every proven that it actually works. In other medical areas where it is covered, they only use it like 5 or 6 times total, not every week for months and months like here. She believes that if Penelope and the other children only received a "booster" once or twice a month, we won't see any difference. I take this as two bits of information from her - 1) The message of "Let's not make a mountain out of a molehill", and 2) She doesn't know what she is talking about.
She also said, when we were talking about the per a whole hour fee, that "they" (the therapists) didn't really set up their program in a good way. "They didn't look at it as to how we were going to bill for services. When you set up a business, you have to look at what your services are going to be and where your money is going to come from. Why would you invest your money in something that you can't find any backers for?" I said "For the children who need it? Because it's the right thing to do?" I told that we take her all the way to their location because there is no one around here that does it. And it's the ONLY thing that works. She said "Well, there are other places but they require you be able to pay for it." I guess because I'm poor now, I must have always been poor and have always been "in the system." I told her "Not true. I have done the search, I have banged my head against many walls trying to get the right services for Penelope. I've gone to Children's and tried to work through their networks even. There isn't anyone here that does this." She said "That is because there isn't any money in it. Medicaid is making cuts. They are not going to start paying for a service they don't already pay for and there isn't proof it works." At this point, I'm debating this issue, for what? I'm not trying to get them to change their billing back. I never said I wasn't willing to pay the fee (after applying the sliding scale). I'm really just learning what is most important to this religious-based social service agency.
Since she is trying to push this back onto the governement and it's funding, I asked if there was any groups or anything they do from an advocacy standpoint. She said "There is very little advocacy on this. It affects such a small population that no, there isn't much." I personally believe it's NOT a small population. I think it's (that is, reactive attachment disorder and it's associated disorders) are such a secret for 1 of 2 things. It's connected to the foster/adoption system and to bring too much light onto could be counter-productive to their initatives. And the other reason is the children are either mis-diagnosed or undiagnosed for either lack of knowledge of all the facts (social history) or of the existance of the disorder. This is compounded with the lack of effective treatment and families and caretakers being told from the beginning "Not much hope for your little one" and possibly preventable decisions are made that continue to compound mask and counteract what advocacy that is out there. I don't know if I'm right or wrong in my opinion. I know that I would love to be a part of advocating for children like Penelope. I also know that I could easly become wrapped up in it because I have such extreme feelings about it. But knowledge is power, people. If money wasn't an issue, I'd be all about it. But I need to take care of Penelope and me and that requires money. Maybe some day. Right now, I just need to get a job.