The cost of KayTar's medications without insurance coverage:
Says it all, doesn't it? (except for the doctor's visits, feeding supplies, Pediasure, therapies, occasional tests and hospitalizations, the chance that her tube pops out and we need a new one immediately....well, you get the idea...)
PS: If you are new to this portion of our story, clicking the insurance label at the bottom of this post will fill you in on the rest.
Funny story, I got an email from someone at the CDF yesterday asking about the kid's losing their coverage. Do you know how they found out? THE BLOG! They are brainstorming about solutions, but in the meantime, we've stocked up on KayTar's medications and are getting ready for what seems to be inevitable. We'll make due, just like last time, but I really wish we weren't in this position, especially right before the holidays.
I'm so sorry, Kyla. I hope they find a solution, REALLY soon.
Kyla I am praying and praying that this doesn't happen to you and your family again.
Kyla - is there something to be done? Anyone else to contact? How about getting MomsRising on it? Hell, how about MoveOn?
This whole situation just sucks, but the timing is horrendous. I'm so sorry for you guys. I wish there was something I could do. :(
i'm outraged on your behalf. and so sorry.
Remember our deal? Let me know when we can help you. The wheels are still spinning around the Blogosphere!
Hey, I just read Magpie's comment. Both orgs are definitely worth contacting!
So, so not right...
Oh, I'm hoping that they will find out a solution before the stockpiles dwindle.
Sending all the love I have left.
This makes me so sad, and then so pissed. Please make your next post "And here's what you can do to help." It's not effing right.
My first instinct is to mail you meds which I know is a mere bandaid compared to say having to replace a gbutton.
I wish there was something I could do.
I have a little secret. Only a few people know this. I have this MAD desire to slash someone's tires. I don't confess that very often, but every now and then the urge is overwhelming.
If I can offer my tire-slashing services, let me know. But don't tell anyone I offered. It's my dirty little secret.
Kyla, we are in a similar situation. My husband is looking for a part-time job to add to his already full schedule, but it seems to be the only way. Here he can work part-time for the public school system and get us on their insurance, so that is what we are hoping for. I'll include your family in my prayers.
This kills me
oh, crappy, crappy, crappy.
I know what I'm asking santa for this year... insurance for Kaytar!
Hi Kyla, I've been a lurker- my recently restarted blog tells something about why- anyway, with all seriousness,(I am Canadian but have American/Canadian grandkids.) I think Canada is an option! It may not be perfect up here but it is FREE and universal!
This WOULD NOT BE HAPPENING IN CANADA!You would have guaranteed coverage!
I'm so sorry. It doesn't seem legal. Is it?
I don't understand how they can just drop your coverage. Unjust doesn't seem a strong enough word.
this makes me so angry. all of it. how do they expect us to raise our families like this. so what? so they can make a buck?
i am so, so sorry.
Kyla, I'm so sorry (again) that this is happening (again). I am hoping and hoping for you that someone will be able to help.
However, as you know, here at my house we like to host our homeless friends for months at a time, so if you have to move to Canada ... you know where to find me.
You're in Texas, right? Have you signed your girlie up for the Medically Dependant Children's Program (MDCP) or other Medicaid waiver? I know the waivers have HUGE waiting lists (5+ years) but it'll be there when you come to the top of the list.
Have you checked into CSHCN (Children with Special Health Care Needs)? How about the Texas Risk Pool? Does your girlie qualify for traditional Medicaid? Or SSI? Or CHIP at the very least??
I haven't signed her up for MDCP. We were finally able to get CHIP just before I was going to do that earlier in the year (when she lost coverage the first time). I have a caseworker sending me paperwork, so this will be taken care of shortly.
Although, KayTar would qualify for Medicaid based on medical need, our income is too high. CHSCN uses the same income levels as CHIP, which is what we are about to lose due to a SLIGHT pay increase.
All suggestions are really appreciated, because we really aren't sure where to turn after this! Thanks!
Yikes. I'm so sorry Kyla. Here's wishing, hoping, PRAYING that this doesn't happen to you again. *sigh*
Arrrrgh! I'm so sorry. This just sucks!
I am new here, so I don't know why she will lose her SCHIP in July. I clicked the link but couldn't find an explanation. I had heard about your story from time to time on other blogs and wanted to learn more, but I would love if you could send me the link to the post that explains why she'll lose it. Is SCHIP going to disappear entirely then?!
Oh dear, that truly sucks. (But I am still so relieved it's not you with health issues now. Bad, bad erin's brain!)
DEFINITELY get her on the list for MDCP. Sign her up for CLASS and HCS too. She may not qualify for one or the other, but it doesn't cost anything to try. :)
I have heard of the Texas Risk Pool, but have no first-hand knowledge of it. I may, soon, though, since my husband is approaching uninsurable, since he's been separated from his employment for longer than the magic 90 days now.
Go to the social security website (http://ssa.gov) and poke around. I really think you would qualify medically, and the income guidelines are more generous than traditional Medicaid. They'll send you money if you qualify, and any month that you qualify for ANY cash benefit (even though it's $1) she'll receive traditional Medicaid benefits. Right now our son is the only one with health insurance...and it's about the only way I can sleep at night.
Email me at firstname.lastname@example.org
if you'd like to chat. We're on the other side of San Antonio from you, but we're both up the creek without the proverbial paddle. :)
Have you signed her up for the Rider 28 program? What happens is you call MDCP and tell them you want to do the Rider 28 and then a caseworker will evaluate her and see if she qualifies. If she does, you will stay one night only with her in a nursing home and when she gets out, she will have MDCP with respite care and Medicaid. We have health insurance through my husband's work, but it only covers a certain number of in home therapies. With Medicaid as secondary it covers with the insurance doesn't cover.
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