Monday, December 5, 2011
November was PH Awareness Month
I don't think that I ever posted this on my blog although I did on facebook. This is a poster that my daughter, Nicole, did for Special Needs Awareness day at our homeschool co-op. She did a fantastic job, unfortunately, she had a sinus infection and bronchitis and wasn't able to attend.
Sunday, December 4, 2011
A Decision needs to be made...
Nicole was approved in Sept. 2011 for SSI. I was very happy about this as she will need this in the future so she may be able to support herself in some way. Our cobra through Rick's ex-employer ran it's course and ended at the end of Oct. but due to a cancer diagnosis for me and one high glucose test for Rick and being pegged diabetic the only insurance we can/could get is a HIPAA plan which we did qualify for but was too expensive for us to pay in addition to our mortgage and other bills. I had to find other insurance for Nicole as she must have it. I applied for Kid Care which basically is the state Medicaid program for children. Our income is too high to qualify for the free program so we do pay a very reasonable premium in order for the benefits to be provided. All of this occurred prior to me finding out that she had been approved for SSI.
For whatever reason she didn't qualify for Medicaid with the SSI. I received monetary benefits but no insurance. I spent the whole month of November trying to get medication switched over from two different specialty pharmacies to one. The was a headache. I had to take her to a new pediatrician because the one she has had since she was four doesn't accept this. I had to stop going to the hospital for labwork and go back to LabCorp who I dislike as well as switched oxygen companies. It was a constant battle with daily phone calls to the pharmacy, insurance company and oxygen companies. I think a lot of the phone calls to the pharmacy would not have been necessary if the doctor's office had done their job.
I got a notice from Florida Medicaid on Thursday which I'm not sure what it means. It does say that medicate start date is 1/01/12. I'm not sure if this means she will start receiving Medicaid then or not. I have not been able to get through to anybody to ask. I will be calling first thing Monday morning at 8:00 a.m. to hopefully find out.
This is the dilemma...on the months that Rick gets paid five times Nicole will not receive benefits either monetary or Medicaid three months after that month. In Sept. there were five Fridays so for Dec. Nicole doesn't get any monetary benefits. If she is approved for Medicaid it will void the current insurance she has through the state kid program. I will have to go through everything I did in November again in January. I will have to change DME's (durable medical equipment) for Nicole's oxygen etc. Besides the headache of this there is also the fact that there will be two or three months prior to her turning 18 in Sept. 2012 where she will not have insurance. Nicole's PH medication alone is roughly $30,000.00 a month and this doesn't include her monthly bloodwork and her oxygen equipment all of which I obviously can't afford even though I wish I could. I have been told by Nicole's case worker at Caring Voice Coalition who helps people with PH with paying insurance premiums, medication costs, applying for SSI etc. that we can turn down the current benefits until she turns 18 but then we will have to go through reapplying again and this time it will be Nicole that will have to deal with them.
Here's the decision I have to make.... do I suspend her benefits until her 18th birthday even though I worked really hard to get this for her so I can keep Kid Care which she will get as long as I make the premium for each month. With Medicaid she will be without insurance for at least two months between January and September if not three and maybe four. I feel that Rick's brother who is also his employer could help him out with this if he really wanted to help. I don't know if I should have a discussion with his ex-wife who is the bookkeeper and explain the situation and then she can take it from that end or have Rick talk to his brother if he is willing to do so. If we aren't able to work things out so she will not be uninsured certain months I will have no choice but too keep her on the current insurance and suspend benefits until September than re-apply.
I am so conflicted... but a decision must be made because I have to pay the insurance premium within the next couple of days.
I know what my gut tells me but that requires other people's cooperation/help and the other decision only relies on me which I have learned sometimes you can only rely on yourself.
For whatever reason she didn't qualify for Medicaid with the SSI. I received monetary benefits but no insurance. I spent the whole month of November trying to get medication switched over from two different specialty pharmacies to one. The was a headache. I had to take her to a new pediatrician because the one she has had since she was four doesn't accept this. I had to stop going to the hospital for labwork and go back to LabCorp who I dislike as well as switched oxygen companies. It was a constant battle with daily phone calls to the pharmacy, insurance company and oxygen companies. I think a lot of the phone calls to the pharmacy would not have been necessary if the doctor's office had done their job.
I got a notice from Florida Medicaid on Thursday which I'm not sure what it means. It does say that medicate start date is 1/01/12. I'm not sure if this means she will start receiving Medicaid then or not. I have not been able to get through to anybody to ask. I will be calling first thing Monday morning at 8:00 a.m. to hopefully find out.
This is the dilemma...on the months that Rick gets paid five times Nicole will not receive benefits either monetary or Medicaid three months after that month. In Sept. there were five Fridays so for Dec. Nicole doesn't get any monetary benefits. If she is approved for Medicaid it will void the current insurance she has through the state kid program. I will have to go through everything I did in November again in January. I will have to change DME's (durable medical equipment) for Nicole's oxygen etc. Besides the headache of this there is also the fact that there will be two or three months prior to her turning 18 in Sept. 2012 where she will not have insurance. Nicole's PH medication alone is roughly $30,000.00 a month and this doesn't include her monthly bloodwork and her oxygen equipment all of which I obviously can't afford even though I wish I could. I have been told by Nicole's case worker at Caring Voice Coalition who helps people with PH with paying insurance premiums, medication costs, applying for SSI etc. that we can turn down the current benefits until she turns 18 but then we will have to go through reapplying again and this time it will be Nicole that will have to deal with them.
Here's the decision I have to make.... do I suspend her benefits until her 18th birthday even though I worked really hard to get this for her so I can keep Kid Care which she will get as long as I make the premium for each month. With Medicaid she will be without insurance for at least two months between January and September if not three and maybe four. I feel that Rick's brother who is also his employer could help him out with this if he really wanted to help. I don't know if I should have a discussion with his ex-wife who is the bookkeeper and explain the situation and then she can take it from that end or have Rick talk to his brother if he is willing to do so. If we aren't able to work things out so she will not be uninsured certain months I will have no choice but too keep her on the current insurance and suspend benefits until September than re-apply.
I am so conflicted... but a decision must be made because I have to pay the insurance premium within the next couple of days.
I know what my gut tells me but that requires other people's cooperation/help and the other decision only relies on me which I have learned sometimes you can only rely on yourself.
Friday, December 2, 2011
Can I catch a break....
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?
Hugs:o)
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."
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?
Hugs:o)
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."
Tuesday, November 29, 2011
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