While so many are getting worked up about healthcare reform, I have found myself strangely taking a back-seat to all the hubbub. And tonight, I think I was able to put my finger on why that is.
Dealing with health care is my every day life. I don't have time to change the system (that absolutely stinks by the way)...I am too busy fighting with it day in and day out.
Right now, on my list are the following:
Called yesterday to re-order Max's formula and enteral supplies so we get them before we run out next Tuesday, yes, exactly on Tuesday. They should all arrive Monday.
Still trying to get Max's talker approved. It was ordered last November. The company that was giving us such a hard time with it decided to go ahead and sell to a much bigger company and just drop us into the lap of the new company. Monday morning I am calling to speak with our new representative there and ask where we are in the process. Last I heard, we are going to have to start all over again. Insurance issued a check back in March for their portion of the talker, $4,900. There is a remaining $5,000 that needs to be paid by Medicaid before we will get it.
Talked all last week to our DME guy about Max's stander, ordered in May. It's been denied twice by Medicaid. They don't see why we don't choose a cheaper one. They are appealing again. I've contacted the company who makes the stander to see if they can help, and they will have their funding team look at the letter of medical necessity.
We've been looking at and trying our hardest to figure out just how exactly are we going to be able to afford a vehicle that will work for Max. It is getting extremely difficult for us to lift him into his car seat. At best, we can find a van that would JUST fit us and Max for around $50,000. That wouldn't include extra space for diaper changes, or other passengers. To get those things, we're looking at around $100,000. None of which would be covered by insurance or medicaid.
Max is outgrowing him "kick-around" wheelchair. He has a more structured chair, but doesn't tolerate it much. So we have his jogging wheelchair...which he's up to the top and hanging off the end. With all the other equipment trying to go through Medicaid right now, and the fact that we got the brand new chair that he won't sit in at the beginning of the year, Medicaid won't pay for a new one. I will be contacting a local non-profit to see what they have in the way of chairs that might fit him. Then I will fill out their 20 page application forms to see if we will be approved or denied.
I got the paperwork in the mail today to re-evaluate his status for Medicaid. Yearly they look over everything and determine if he still "needs" assistance. I have to look through all the paperwork and sign it and get it back in within a week so we don't lose the Madicaid waiver.
I have to look for a new OT, since his current one will not be working for the agency that sends her out after Sept. 10th. She was great with Max, and he worked hard with her. But I will need to find someone who is not a contract worker, as I am not in the mood to get used to someone, and Max get used to them only to have them leave in 6 month's time.
Monday will be another phone call to Neurology to check up on Max's lack of sleep. We will likely be coming in for EEG, Video EEG, or an overnight stay for full observation. This could likely mean more medicine (which we pay for out of pocket from a pharmacy in Canada, because it is STILL not FDA approved). Or a whole new medicine that we will have to learn.
I will be contacting our PT about a new therapy suit that will help with Max's body tone. I'm not holding my breath that it would at all be approved, since it hasn't even been a year since we got his last suit...which he has of course outgrown. Seriously...KIDS GROW!!!!!! That's the whole point of all of this therapy and treating for life!
I will be calling the pharmacy to check on a medicine he takes for him metabolic disease to see when exactly it will be in stock. Since Max is the only patient in the entire Walgreen's database that takes it, they have to order from the manufacturer. Which is perfect, since we are completely OUT!
You see, these are just the things at the top of my mind at 12:30 on a Sunday morning. Things that keep me up. My list of health care issues that are faced on a daily and weekly basis around here.
So at the end of my day...the fighters for their side of health care reform, can have their fights. They can yell and picket at the townhall meetings...they can agree completely with a totally new system. Because there are people in this country that just like to argue.
And I will fall back exhausted, without an ounce of fight in me over things that the majority of the public doesn't even understand. Just wishing that some of those people so heated about it all would make it so even one of the things on my list was easier at the end of the day.
5 comments:
I was thinking of you yesterday. We have had more than usual health stuff and Dominique has 3 things I need to administer twice a day, Ivan and Emora have issues and me too. My calendar of trying to remember who gets what is getting crazy and I've wondered how you do it everyday. You are amazing and awesome and I pray rest, efficiency, favor and the power to juggle, juggle as you have to deal with all this. And yes, may things get better. We are on medicaid with the kids and while I am thankful for the help there is way too much administrative nonesence.
Beautifully written.
The Lord is so good to give you the wisdom, understanding, patience and help to administer to Max the help he needs. We are so proud of your commitment and love that is shown in your loving care for special angel, Max. Prayers and Love..
I don't really know how you manage everything! Do you think this reform will alleviate any of the stress?? I will admit, I've been reading HR 3200 with you in mind - if I were the town hall attending type, I'd be asking the question I just asked you. You need an advocate.
Deanna,
Alleviate the stress? No. Having a child like Max means there will always be "stuff" to call on, work on, reform daily. A new bill will not take that stress out of my life. Even if this bill goes through, it's not likely to change whole lot right off. I'm not going to wake up tomorrow with a weight off of my shoulders because everyone has options with health care.
The thing is, since Max was nearly 2 we've had government insurance. If not for Medicaid, we would absolutely without a doubt be broke. We pay incredible premiums, for incredible insurance, but it still does not cover everything we need. Most of his medications are not covered, most of his equipment is not covered, and most of his therapies are not fully covered by insurance. So we use Medicaid as a back-up. As do a lot of families with disabled children. It's not that we like being on government assistance, or that we like filling out hundreds of papers a year, with bi-monthly check-ins, and people knowing everything about your life. It's because without it, so many of our children could not survive.
So we have Medicaid as a back-up, and an assurance that if Steve ever loses his job, or changes jobs, at least Max will be okay. What the new plan could offer us is a comfort in knowing that if indeed Steve ever lost his job or started work somewhere else, we wouldn't have to worry about trying to find insurance that would accept Max with his pre-existing conditions. As it is now, if we lost Steve's insurance, we would only have medicaid. And it's not perfect either. We like having the option of private insurance. To be able to see the doctors we see, and go to the hospitals where all those doctors are. But we NEED the gov't insurance to make sure all the other stuff happens. The quality of life stuff. The equipment, and therapy, and diapers, and medicines. Without Medicaid, we would be paying out of pocket for all of those things because the insurance we pay for will not cover them.
I think we also have a very different view of gov't run health care in our visit to the NIH. It was the most organized, streamlined process we've ever encountered with Max's care. They are running a study, based on gov't funding to diagnose and evaluate Max, and a couple hundred kids like him. For a lot of the families in the study, they don't have a Children's hospital, or have gone to doctors who have never heard of the disease Max has. Those children have top quality care, at no cost. And because Max is a part of that, we will never have to worry that he won't be taken care of in an emergency situation.
I'm not naive to believe that all of this comes by magically without taxes, but believe me, we pay more than enough of taxes. I don't feel badly at all about taking advantage of the benefits the gov't can give Max, because we pay a huge sum every year in taxes. So I am paying into that health care system.
And at the bottom of things, I believe that no one should go without if it is something we could all have. We are the richest country in the world, and we have citizens, people who have fought in wars defending our country and freedom who can not even afford a doctors visit, or medication. And that is not right. I believe that if it means I pay a little more so my neighbor can have basic health care, then I will. Because somewhere down the line, I may need that from someone else. And I know that is something I differ with a lot of other people, but it is what I believe.
I don't think this is going to be the end-all fixer bill...but we have to begin. We have to start to fix it. And we will get it wrong along the way, but if we don't try it will never get better.
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