What a month November has been with starting Nicole on Kid Care. I fought the whole month to get her medication through a different pharmacy because the doctor's office didn't do what they should have done in a timely manner.
Nicole was approved for SSI in Sept. but for some reason she didn't get Medicaid and because of my husband's income when he gets paid five times in a month then she won't get benefits on the following third month (e.g. Sept. had five weeks so she will not get a check for this month in Dec.). I received a paper yesterday saying start date for benefits 1/1/12 but really I'm not sure what it means as we have share of cost through Medicaid now which is what you get when you don't qualify for Medicaid. I faxed it to Nicole's case worker at Caring Voice Coalition which is an organization that helps people that have certain diseases and pulmonary arterial hypertension is one of them. They helped us get the SSI.
The case worker told me that I can deny benefits but I worked too hard to get it for her and she will need it as she gets older. On the months she doesn't qualify she will have no insurance. Her ph medications alone cost about $30,000 per month and this doesn't count her other medications. She also has a oxygen machine and blood work that we have to pay for on a monthly basis. I just don't know what to do.
I don't want to go through the headaches I have gone through this month again in January as I will probably have to switch pharmacies and respiratory therapy companies as she is on oxygen.
I don't understand why all of these issues are happening. I must believe and have faith that God is going to work it all out. Why would He have her get approved just to have her have no insurance on certain months?
Jane~mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS
"If you don't like something change it, if you can't change it, change your attitude about it."