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.


  1. Hi Jane--I'm visiting as part of our Holiday Progressive Blog Party. :)

    What a decision! It's like having the weight of the world on your shoulders.

    I'm curious: What does your gut say?

  2. Hi, Jane! I'm here for the Holiday Progressive Blog Party too. This is a tough decision and it seems you need a bit more information before making the decision. Maybe the group that helped you with the application can explain about the problem with Rick getting paid 5 times in a month (isn't the problem with total monthly amount he makes and not amount of times he gets paid?). Soc Security/SSI/Medicaid can be so confusing! Robert's on medicaid in California and I don't know what we'd do without it.

    It sounds like if you suspend Medicaid and have to reapply in September, you'll have delays & pharmacy changes at that time too. Is it worth it to go through the whole application process (and delay) again to postpone the pain of having to switch again in January? I hope you're able to discuss this with the case worker & social security so they can give you more info to make the best decision for you.

    caregiving. family. advocacy.

  3. Jane, At this point, I think I'd follow my gut but there must be someone out there who could help you with this decision. Have you contacted any non-profit organizations to see if there's any help available? Someone at one of these organizations may know of someone who offers pro-bono work. They may at least be able to put you in contact with someone who could give you some advice.

    If you want to try the non-profit route and don't know where to turn, you could try your local United Way. (I used to work at the Providence United Way and some of the people who work directly with the agencies or the (labor unions) may be able to help you.

  4. Jane -- first of all, it's nice to meet you and welcome to our Circulation Desk blogging group!

    I have to echo Sherryl (keepupweb) in that there must be some help out there. Have you talked to medicare about their advocacy program? There Has to be a non-profit you can consult with before making this huge decision.

    Your situation perfectly showcases why we need Universal Healthcare in our country! It is absolutely inhumane to have a system that penalizes (and often bankrupts!) families because of unforeseen illnesses. I won't get on my soapbox here, but this is an issue that I am extremely passionate about!

    I wish I had someone or an organization to steer you towards. My thoughts are with you as you make this decision.

    Heidi & Atticus (the brilliant & opinionated pup!)
    "commentary to give you paws..."

  5. Hi, I came to visit from the Holiday Progressive Blog Party. I'm so sorry to read about your medical and insurance issues. I have a couple of beloveds who are in the throes of dealing with various health and Medicare/Medicaid issues and know how difficult and time-consuming it can be all on its own, without the added difficulty of the 5th paycheck. I wish I had good advice to share with you but I have never dealt with this personally. But it sounds like several of the commenters have some wise encouragement for you. And please know that I am praying for you for wisdom, comfort, and encouragement.

  6. Hello Jane,

    It is my pleasure to meet you. I came to know you through’s Holiday Progressive Blog Party. I commend you for being such a great caregiver. I cared for my granny and mother so I understand the hardships and the glory that come with us. I will come back for sure. Again, it is nice to meet you.


  7. Hi Denise:

    It always seems like I have the weight of the world on my shoulders.

    My guy says she needs the Medicaid for her future but I can't have her with no insurance and I don't want to go through this again.

    Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS

  8. Hi Trish:

    The months when Rick gets paid four times the income is fine but that fifth week puts him over.

    I wanted to talk with my brother-in-law today who was suppose to come over and never showed up which unfortunately is nothing new. He is unreliable, undependable, disrespectful. I don't trust him at all. He has no integrity.

    We can't have her go for three months (March, June, and Sept.) with no insurance. The monies she received will nowhere near come close to paying for her expenses. If we suspend her benefits we will have to pay back what they gave us for Oct. and Nov. also which I still have so this isn't a problem.

    I guess I shouldn't worry about it right now as I have had nobody say she will be getting Medicaid. The case worker told me that she believes it is the start of her Medicaid which should have started in Oct.

    I thought that I was feeling a little happier but as the day has gone on I just feel like crying.


  9. Hi keepupweb:

    My gut says I need to go with Medicaid to keep her benefits but this would mean I have to rely on somebody to do something to make sure she has insurance (my BIL) but if I keep Kid Care than it is only up to me to keep the premiums paid.

    Thank you for your advice.

    Jane~mom to Nicole, 17 yo, VSD, PAH, Eisenmenger, BHJS

  10. Hi Heidi:

    It is nice to meet you too :o) Sometimes I tend to agree about Universal Healthcare. I do know that the profit in the health care system needs to be stopped or nothing will get better. It does no good to be able to get insurance even with a pre-existing condition if it is to expensive to afford or you would have to pay insurance over your mortgage.

    Thank you for your advice.

    Jane ~mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS

  11. Thank you both Kaye and Angela for your kind words they are much appreciated.

    Jane~mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS

  12. Hi Jane,

    Thank you for having me as a guest of the Progressive Blog Holiday Party.

    Sarcastically said, isn't dealing with the insurance stuff fun?! Wacko just doesn't seem to define it well.

    Before we left Florida when Greg got his Medicare it took over 6 months before he was activated. Here in Georgia they say he makes too much to get 'Caid. And my husband's long term disability company penalized us $40K after SS told my daughter and I we should be getting SSB. Now she (a tyke) and I are not allowed to work for the life of the policy or he loses the policy.

    That all said here's some ideas to try:
    Find an Elderlaw Care attorney...they specialize in this stuff. You may be able to get one to volunteer your time.
    I also have a direct contact to a former DOJ/ADA attorney who works out of the South Florida Center for Independent Living...he may have some resources to help guide you.
    Also, try calling SS at different times and different'll find that the answers change. Take an accumulation of those and that might give you a better idea of what is occurring with her 'Caid.
    Also, though she does not have a spinal issue...try contacting the Miami Project. They have all kinds of resources and a extremely high population who needs 'Care and 'Caid...they may be able to give you some good leads.

    Overall, my first thought would be is to pay the insurance premium so that if everything falls through you have a back-up plan. I'm presuming you can cancel the insurance at any time.

    Good luck..if you need more ideas let me know.

    Roaring Mouse - Happy Holidays!

  13. I can only begin to imagine the intense stress this dilemma places on you. I work with some families that use SSI and Medicaid, and I am aware from that standpoint of how you are practically running a business just to apply for and get the proper benefits. I obviously have no idea what choice you should make, but I hope you can find the right person to give you useful information.

    Very challenging to know you have lifelong needs for your child and you aren't sure how best to get them met. Without having any of these issues, I was very worried for a while about insurance because I had also had cancer, but it turned out I remained eligible for the insurance I had through my employer, even when I retired. Just that little bit of worry (nothing compared to what you are going through) was hard to handle.

    Best to you.

    Judy Stone-Goldman
    The Reflective Writer
    Personal-Professional Balance Through Writing