Monday, October 1, 2007

Why is it.......

that each state differs so much when it comes to helping children with special needs?

We just got back from a doctors appointment, and we got into a lengthy discussion about what type of help I would be able to get for Rhett if we lived in a different state.

Rhett is now on disability medicaid, and I am beginning to find out that they are not covering a lot of the things that he needs.

For instance, Rhett is on CPAP or O2 at night. He is consistently hooked up to a sat monitor. If he pulls anything off, then his oxygen saturation's drop and the monitor beeps at me. I bet on any given night I am up at least 18 times adjusting things and getting him back to sleep.

If we didn't live in our state, well we could get a home health care nurse to come in at night and do that for me so that I could actually sleep more than just two hour intervals.

The Trazadone that he is on, they do not cover that until he is 5 years old. Wanna hear the reason on that? Very rarely it can cause an erection that lasts for a long time and does not go away. They figure that if he is 5 then he can tell me about it, so that we can seek medical attention. It doesn't matter that he has been on it for 3 months already, and never had that reaction.

Medicaid also will not cover Rhett's pediasure just because he does not have a feeding tube. It does not matter that it is his source of nutrition. They simply will not make any exceptions.

We fought tooth and nail for them to cover his Amalodipine, which is his blood pressure medicine for his lungs. They are now covering that......WHEW!!!!

Now we are fighting for his Prevacid to be covered. They say he can take over the counter meds for heartburn. I just can't convince them that he doesn't have heartburn, he has reflux. Luckily between our reg doc, and his pulmonologist we have been kept stocked up on samples of that one. Again.....WHEW!!!

Then we have speech therapy. We have early intervention who comes out once a month and works with him, but the way he is going in his language right now I would love to be able to take him to a private speech therapist. I think he would come leaps and bounds in speech if I knew how to work with him more. I feel like he should go to speech once a week. But medicaid will not cover speech therapy in our state.

So as we have faced moving it has been in our thoughts to move out of state, just to get more help. But that would mean leaving our family behind, and I am not sure that I can do that. I need their support more than anything. I don't know what I would do if we moved somewhere and had no family or friends. It would be so hard.

So for now we just will hang out in our glorious state that keeps cutting back on health care programs, and hope for the very best for our child. My goal is that one of these days we will be on our feet enough to be able to provide for Rhett without relying on all of these silly insurance companies and their silly rules.

Or I could be really optimistic, and think that eventually he is going to outgrow his health issues. He be so healthy we don't have to worry about using insurance other than for the basic trip to the doctor for well checks, and maybe the once in a while antibiotics. Is that really too much to ask for?


Niksmom said...

Oh I feel your pain on this one. My son, Nik, is on Medicaid, too. The "managed care plan" he is in hsa case managers. If you have access to one, I highly suggest it. Of course, they will try not to provide extra stuff but they *do* have some pull in getting things pushed through.

Also, look into whether your state has a parent information center. They can help you find advocates and resources and all those little loopholes that will allow you to get things covered.

I would think that at Rhett's age, if you can get a prescription from the pediatrician for the pediasure, Medicaid (or WIC) would cover it. FYI...if he's eliglbe for Medicaid, he should also be eligible for WIC. Look into that.

Have your docs write letters of medical necessity for all the things you mentioned...including the diagnosis of reflux and an indication fo why he needs a specific med vs an over the counter. If you have that on file, Medicaid may provide it. If not, you can appeal and may have some luck.

Finally, on the speech therapy-- have you had Rhett evaluated by an early childhood intervention team NOT affiliated with early intervention (like through the hospital or a developmental pediatrician)? If he tests as having greater than a 25% delay, you can ask your primary doc to write a letter of medical necessity for more services (including PT and OT if necessary).

Good luck! I know it's hard navigating all the stuff we have to for our kids. Just know you are not alone and there *are* resources out there to help you. (Medicaid just likes to keep them as secret as possible!)

Niksmom said...

Forgot to mention...on the Rhett small for his age? Does he have a hard time putting on or keeping on weight? You could ask the doc about a diagnosis of "Failure to thrive" which puts pressure on Medicaid to provide the medically necessary food.

Jessica said...

Wow, I didn't realize how lucky we are here in Connecticut... you guys should move here :) It's crazy how each state is so different!

Laura said...

(((Hugs))) to you Pam! I responded to you on T21, please go read it, it may help you feel better.

Please email me if you want to talk, I so know exactly what you are going thru.

By the way, I saw Sweet Rhett and Chloe on the jumbotron! I took a picture, but it came out kinda funky!