First off, I’m not going to apologize for this post. I have a tendency to want to keep everything in my blog pretty upbeat, and I want to focus on what I am learning about Finland (however mundane and trivial it is, it may seem), but I need to take a moment to put some anger and frustration down on the screen, to maybe get some help with what my next step is, or to at least hear that my feelings are not misplaced.
First, a little history:
I have been blessed with three lovely and wonderful daughters. You may catch glimpses of them now and then on this blog. My youngest daughter is 19, and has started at a large university in Baton Rouge, Louisiana. She’s doing well enough, and dealing with the usual struggles that come with being away from home for the first time, which includes she doesn’t really have a home any longer to be “away from”, a mom that lives across the ocean, a dad in another state, studying, and a chronic medical condition. That last part is very important.
She was born with a condition that is called cloaca. It is a birth defect that covers a whole spectrum of disorders, but in general, she was born with one common channel for waste, and before she was born, that did not open to the outside. So her disorder has to do with her bladder, bowel and reproductive organs. She was born missing the bottom part of her spine, the part which houses the nerve endings to control those functions, so she has to use a catheter to empty her bladder every few hours, and each night she has to do an ante-grade enema to empty her bowels.
She also has some kidney issues. I can’t be sure of the technical terms, but her urologists have told us that one of her kidneys is functional, but is small and dense, and won’t grow beyond its current capabilities. The other one is hard and nearly non-functional. She is doing well enough on what she has, but she has to take care not to put stress on them, as they won’t take much. She has to be very careful with bladder infections, which unfortunately are part of the life of having to use a catheter.
So, that’s it in a nutshell. There is no ‘cure’, as she is missing the nerves and muscles to perform those functions, and so requires the manual intervention. Her kidney function is not chronic enough to require transplant, but hovers right above that necessity.
In spite of all this, she’s a wonder. I tend to call her brave, but she hates that term. She says its not brave to simply face each day doing what you have to do. It’s just…what you do. She doesn’t have a choice in the matter, so she says she isn’t brave. So fine, she is resolute and she faces each day pretty much without complaint. Sure, her early tween years had a few of the “Why did I have to be born this way?” drama scenes, but for the most part, she has accepted the myriad of scars as her marks of battle (34 surgeries and counting), and she says she’s not disabled, just ‘differently abled’, and it’s just about going to the bathroom, so not so bad.
She requires catheters to go to the bathroom. There is no getting around those. If she doesn’t have catheters, she can’t pee. Can’t void her bladder. It would fill and be painful and uncomfortable and bad things would happen. As much as someone without legs needs a wheelchair, she needs these catheters. Heck, she needs them to live, or she gets infected, her kidneys shut down, and she dies. Simple as that.
When she was younger (under the age of 19), she was covered under Medicaid. Mainly because the insurance that her father has (and mine, even) did not cover her urinary catheters. Excluded them, specifically. Which really sucked, as they run about $2,000 a month to get. At a little over $11 each, and she uses 180 or so a month…it is more than the average family can afford. And we pay out of pocket for her feeding bags, connecting catheters and supplies for her enemas. Medicaid would also cover the gentamicin flushes that she uses to try and avoid as many bladder infections.
When she turned 19, she was to be dropped from the Medicaid program, at least as a child, and they would find a program to put her on as an adult, and she would be covered while the review was in process.
And here is the problem we have come up against:
Yesterday, she received a letter from the Medicaid office saying that upon review, she was not eligible for any of their programs, as she was “no longer disabled”. What? Seriously? And what part of the review of her medical records suggests that she is “cured”? As her sister said upon hearing this, “Call the news. There’s been a miracle.”
Needless to say, we are in a bit of a scramble. She is calling her doctors in Cincinnati to try and get more descriptive letters written. Which is another thing…Medicaid, in the past, has paid for her to fly to Ohio from Louisiana to see her doctors (yes, a TEAM of surgeons) for her annual check up, and for emergency care, because they agree that no one in the State of Louisiana is qualified to handle her issues.
She’s filing an appeal, but she says that the lady that she talked to on the phone didn’t seem all that eager to help her. When she asked what medical records were reviewed to give them that decision, the lady replies, “I can only tell you what is in the letter; you don’t qualify.”
I’m just not sure where to turn. I can’t make the phone calls for her, as she is over 18 and HIPAA doesn’t allow me to even gather information on her behalf. We don’t have any specific place to turn in a waiver so that I can. She’s stressed with school, and now she’s stressed with this. She says she can’t understand how having to use catheters to go to the bathroom doesn’t qualify for some measure of ‘disability’. We’re not asking for her to be disabled in the context of receiving Social Security payments, simply for her to be covered under a Medicaid program so she can get her medical needs covered.
If anyone has dealt with Medicaid issues for adults, and has any advice, please let me know. We are up against the clock with this, as well. Although the answer was not definitive as far as coverage while this is under appeal (Her caseworker’s answer is “I don’t know if you are covered while it’s under appeal. I don’t think so.”), we have to assume that as of the end of the month, she will no longer have coverage for her medical supplies. I’ll be putting in a call to Coloplast to see if they offer any sort of patient assistance program, but that doesn’t help us if she has an infection and needs to visit the ER, and it doesn’t help with the gentamicin flushes (which are also expensive).
She’s such a great kid…young lady, and while her birth defect is not something you can readily see, and it doesn’t keep her from doing most of the things she needs to do, it is a birth defect that can be debilitating, and should be covered by Medicaid. I don’t want to be bitter about some of the things that I see covered by Medicaid (alcoholism?) and yet my daughter is deemed ‘ineligible’ by someone who seems to be ignoring her medical history, but I can’t help but wonder at the process used. Shouldn’t we be trying to promote these kids to be as independent as possible? And it seems that because she has been successful at it, she is being punished when she needs the help. Grrr. I wish I could express my thoughts more eloquently, but this is all I have.
I hate that all this is happening and I am so far away. Thank goodness for Skype and Facebook, and hopefully the power of the Internet to help us sort this out.
Thank you for listening.