Scarlett's MRI was cancelled at the last minute on Friday - apparently there was a patient in the hospital who needed an emergency MRI, and that pushed Scarlett out. I was very upset, but it got rescheduled for tomorrow morning, so hopefully we will get it over with and not have to wait over a whole weekend to hear some results.
Chris and I are stuck in a very complicated mess with health insurance right now. It is causing a huge amount of stress, and we have yet to find a solution. It is confusing and long, so I don't expect everyone to read it fully - just need to vent it and see if I can come up with a way to make it work.
Right now, Scarlett is covered by two medical insurance plans; private insurance through Chris' old job at Starbucks (which we are playing COBRA to keep), and Medi-Cal, provided by the state of California for people with permanent disabilities and low incomes. Medi-Cal was granted based on her qualifying for Supplemental Security Insurance (SSI) through the the federal Social Security program; in California, people who get SSI automatically qualify for full-scope Medi-Cal. SSI has been termed a "gateway" service by many of the providers we see, as getting it opens the door to many other services.
Having Medi-Cal has been huge relief. Every medical cost associated with Scarlett's treatments - everything after our private insurance pays its part - is covered. This includes her hearing aids and their batteries, chemo, hospitalization, surgery, nearly everything that we have encountered so far. It covered formula when she needed it (now that we blend for her, we buy all her food), covered the FM system that lets her hear our voices better through her hearing aids, provided feeding therapy (denied by our insurance), weekly PT and OT (denied by our insurance), and even saved us from the exorbitant cost of chemo that was not covered by our private insurance (as much as $12,000 per dose.) It has saved us, and has allowed Scarlett to make the progress she has.
When we first applied, we were desperate. The insurance we had when Scarlett was first diagnosed was through my job; when I had to quit to care for her, the insurance lapsed. The insurance from Chris' job was good, but had co-pays and did not cover some of the necessary equipment, procedures and treatments. We had barely been able to swing it all on our combined income, but on his alone, we could no longer afford our rent, let alone the new medical expenses. We needed help. Medi-Cal and SSI were not the only help we found, and we were very grateful for it all - WIC provided some of Scarlett's infant formula and some staple groceries and EBT (food stamps) helped fill in other gaps.
After about 10 months of that, we were ready to make some changes. Scarlett was stable, so I felt like I could go back to work. Full time teaching made a significant change in our income, but could not change some inevitable effects - we had to move in with my parents, who had to sell the condo we had been renting (or living in...without paying a fair rent for over a year). Scarlett still needs full-time care, so it made the most sense for Chris to take a turn being a full-time dad while I work.
This posed a problem for insurance. By quitting his job, we lost his insurance. We had planned to roll over to the insurance through my school district; unfortunately, the current arrangement with the teacher's union is for teachers to pay the full premium, which would be over $2,000 per month - nearly half my paycheck. COBRA with Starbucks is abut half of that, but still a huge percentage of our income. We applied for several individual insurance plans, but as soon as we had to disclose Scarlett's medical history, we were automatically denied. She is legally required to be covered by an employer-provided plan, but independent plans can deny us based on pre-existing conditions. So, to maintain our private insurance (for Chris and me, as well as whatever of Scarlett's treatment will be included), we have COBRA as well as Medi-Cal.
Here's the trick: we are trapped. To maintain SSI, and therefore Medi-Cal, we must stay below the income threshold. That means no savings - we are allowed a maximum level of assets, including the value of our second car (currently my 14-year-old, handed-down SUV). If we make much more money, we will be denied and therefore lose Scarlett's insurance. We can continue to pay COBRA, but it runs out after 18 months (and who knows where we will be then). If we want to move out of my parents' house, or ever have anything more than we can fit in a single storage unit, it would take work to save...so we are just trapped here. We would love to buy, or even just rent, a small house somewhere near by where I can work, Scarlett can get to school and we have some room for her and the dog to play. That is so far off, it seems impossible.
We have already encountered some threat from SSI - in December, my district pays early (on the last working day of the month, before Christmas), so we deposited the check without thinking. When our income for the month was reported to SSI, it included the check from November (deposited on Dec. 1) and from December (deposited when it was dispersed around Dec. 22). This caused us to be denied SSI for December. Because they determine eligibility AFTER dispersing checks, we now owe the Social Security Administration that month's SSI payment back. There is no consideration for me not getting any pay in the month of January (that month's check was deposited Feb. 1) - it's based solely on our transactions. It was our fault, but not something we even considered a problem - our total income never changed, just the date it was deposited.
We don't want to be reliant on this faulted system, but we need it right now. We needed it when we first applied, and Scarlett's need has only increased since then. We have been able to move away from the other assistance programs, but were so grateful that they were available when we needed them. So many factors make it hard - we live in one of the most expensive areas in the country, by chance; my job has no way to get a raise or earn more (and I'll be lucky to not get laid off yet again); Scarlett's schedule is such that she requires a full-time parent for school and appointments. We are not willing to compromise her development and progress at school, so that part cannot change.
It looks like we may have a chance when California changes to the new "Covered California" program, which says it will offer a "easy-to-use marketplace where you and your family may get financial
assistance to make coverage more affordable and where you will be able
to compare and choose health coverage that best fits your needs and
budget." We're not sure yet what that will look like.
More than anything, I am frustrated. I had to fight to get her SSI approved, writing letters to our representatives to speed it up from a months-long waiting period. We have waded through oceans of paperwork, fought annoyingly inconsistent phone systems, and been talked-down to by phone agents on several occasions. It is a maddening system to be a part of. I can only imagine how difficult it would be if I did not speak English, was not able to read, or did not have the education I do to understand the process. It continues to feel as though we are being punished for having a sick child, as though we made some kind of mistake that earned us a spot in insurance purgatory. I can understand why someone might choose to not work, just to avoid the hassle of refiling their paperwork and risking the loss of everything that is keeping their child healthy. I it much harder to work.
There has been a lot of attention given to the medical programs offered to people in the United States. There in no question in my mind that there is a serious, embarrassingly terrible problem when it is this difficult and maddening to insure my ailing child. I don't care which side you support; my child deserves to be covered and treated as much as one with significant financial resources; her illness and treatment should not have to damn us to financial prison.
Let me just say, I am sure this will bring out some less-than-friendly feelings in some...please don't share your negativity here.
I can't fathom or help you fathom this madness. Since my own diagnosis, and even 20 years before that, with the diagnosis of my husband with a different disease, I have learned the horrors first hand that befall those who want to work. Its shameful and an embarrassment to our country. I want Obamacare to survive so that there is hope for people in your situation. I do not see any other options, other than being completely without jobs and money. I am so, incredibly sorry you are going through this. I wish I had useful advise to offer. Its all completely INSANE. You know where the real gold is though. She is your touchstone, your focal point. I respect what you are doing so much. You are all super stars.
I do not have a sick child, so there fore I can not say I understand completely. I do understand the broken system and the stress it cases. My husband (sole provider of our family) was hospitalized this past summer for over a month. It was determined that he has Lupus and was having a major flare that was affecting his brain. He was experiencing something called Lupus Psycois. We had to make the leap to move in with my MIL. She was also experiencing some financial difficulties to. It has been a challenge for me, as a mother, a wife and as a person who is tired of fighting doctors insurance companies, doctor offices, Disability Paper Work and BILLS. As if the stress of sick love one is not enough. Thoughts of peace and healing sent your way. I will be thinking about Scarlet and you during her MRI tomorrow.
And another thing. The fact that merely discussing this atrocity we call medical system would bring out negativity in people who might then comment here. I just have to say, that's another problem I have. Why is it that those who have the most to lose become the most adamant that we don't need to reform this "system." How does it work that way? Its worrisome. I wish you all the luck and strength in the world to cope with what's coming your way. I don't know how, but somehow, you have to distance yourself from this madness and focus on your Scarlet.
Holy moly... cannot even comprehend how much stress you must be going through. This whole thing is appalling for me since I come from Canada with a different healthcare system. Even the concept of $2000/month for insurance! It sounds like you try so hard to keep your head above water. I hope everything will get resolved with the insurance. It's painful to see how many insurance barriers you have to jump over to maintain Scarlett's life.
*hugs* I wish I can give you and your family, strength to pull through all this
I am so sorry you have to deal with all this financial stress on top of the colossal stress of having a seriously ill child. The system is so broken, it's sad. I don't have much advice to offer other than to tell you that when my COBRA ran out, I was able to switch to private insurance via a "conversion plan". Basically I pay much higher premiums than someone who actually qualifies for private insurance (I didn't because of a certain medication I was on) but because it is a conversion plan, they can't kick me off for preexisting conditions (much like an employer plan). Just something to look into once COBRA runs out. I'll be thinking of you all tomorrow and wishing for the best news from the MRI.
Just wanted to send you hugs and positive thoughts. I hope your stress levels decrease and I hope Scarlett's MRI goes smoothly. Thinking of you and your family, as always! ((hugs))
I cannot even fathom what you have to deal with every day. Please know our prayers are with all three of you. I totally agree with your post, Scarlet, her illness and treatment are just as important as anyone else's and you shouldn't have to go through these hoops to get her good care!
Brandi and Chris, as I receive SSI and therefore Medicare and MediCal, and have a limited amount of assets that I am allowed to have, I do understand at least that part of the struggle. The one thing I have learned is to be aware of your bank balance. Another thing I have learned is that SSI works 2 months ahead. Meaning the money you earn in March affects your check from SSI in May. I agree, crazy system. And having to report income, then having the reps not post it, then being hit with an overpayment is frustrating to say the least. If there is anything I can do to answer questions you can email me
I realize being in a different state that some of our solutions may not work for you guys, but we totally understand the feeling of being trapped. Colorado has a Medicaid buy in program that is based off of your income, but doesn't limit you to what you can make or what assets you can have. Here you would pay a monthly premium for the same coverage Scarlett receives now. It may be something to look into.
Look into becoming a CNA. In Colorado it was a 6week program (some do it in as little as 3 weeks) because Scarlett has special needs and receives Medicaid she should qualify for home health care, and what's more is SSI does not count parent income from CNA care when it's for your child. (My son is on SSI, I work for a home health care company, they took my son on as their client and me on as their employee and assigned me their employee to my son their client. So I get a paycheck for giving the same care I was before I got my CNA. The company I work for even paid for me to attend the school. The only cost I had out of pocket was my state board exam fee.) this has been invaluable in allowing us out from under that asset line. This would be something that Chris or both of you could do fairly easily and it has allowed my family to get out of the debts that we had and even stash some cash in a rainy day piggy bank. Plus it gave myself and my husband employee healthcare benefits while my son remains on SSI. We learned to deal in cash as much as possible as well.
It's insane the way the system works, your penalized if you make too much, but it also keeps you in debt and unable to climb out of the hole. I wish there was an easy answer!! Hopefully you all will find some solutions so you can focus on your biggest priority, your beautiful daughter.
Just wanted to say that I would be praying for you guys, I have two insurances for my son as well. We have my insurance through my work which is fantastic, but we have to pay over 300 a week for, so most of my pay goes right to that. We also have a state insurance as a secondary insurance for him which helps alot, but it is amazing how stuck we feel because of it. You need the help and they help you, but they don't want you to help yourself and get yourself in a position to be more financially stable. We have been in this boat for years and it is exceedingly frustrating. My prayers are with you, that some door will open that makes all of this easy, and affordable, and that you will be able to build a savings and not have to be stuck in a place where you have to rely on this. PRAYING!!!!
I am so sorry that you all are left to deal with insurance nightmare while trying to get your daughter well. Sending good thoughts, hoping it doesn't drive you complete mad.
I also wanted to tell you that each state has an HCBS Medicaid waiver wait list. The waiver awards eligible children Medicaid benefits based on diagnosis and not based on parental income. He average wait time on the waiver is 2-5 years, but once on the waiver it lasts until the child turns 18 at which time there are other programs and benefits to apply for as an adult. Obviously not a quick solution, but one that will ultimately not limit what you can make. Some states are able to add kids faster than that too, it depends on each state's funding and program.
Just curious, does the state take into consideration, yoir expenses? For instance could you pay rent to your parents and they would set that money aside as your savings? I am guessing that it does not matter and it is just income.
Okay, another thought, ever thought about moving? I know that you are likely very tied to Scarlett's doctors and her school but there are great doctors and schools throughout the country. Have the two of you thought about putting your resumes out there to various states and seeing what would happen? My husband's company has no out of pocket monthly expense for health insurance. We pay copays and some money for tests but compared to what some other people pay, it is not bad. When I was working full time as a teacher it would have cost me $75 a month for our family to have coverage. There are teaching jobs to be had in other parts of the country. Just a thought. The system stinks but then again there has to be something in place. I am sorry you have to go through this. Once she is three and qualifies for preschool special ed services, it is billed differently.
Oh the hassles of insurance companies. I don't think they ever make it easy for those who are in need.
I will pray the Lord will meet your need and provide all the money for Scarlett's care.
The only thing I remember is that YOUR UNION sucks. Omg. I have a wonderful premium....and while I expect it to double or quadruple or even, um, octuple (.) it would still be less than a tenth of that. I couldn't survive. I couldn't feed myself or pay rent. Or our gas in my car on what would be left over. Hugs. It is a broken system. More hugs.
Thank you for all the feedback and support. We can't move - we'd rather be broke than away from our families. I will look into some of these - often, we know more about this than those are designated to help us.
Just wanted to send you some love and support. Our medical bills and premiums were nearly 10% of our gross income last year as my husband has some sort of undiagnosed lung issue (young, otherwise healthy, non smoker). The system is broken and frustrating to say the least.
Some states do have a waiver program specifically for the situation you are in. In Georgia it is called a Katie Beckett waiver. It's complicated to apply, and sometimes takes a while to get approved, but not always. It might be worth hiring someone to help with the application, you may be able to find an advocate or lawyer with experience in applying that you can pay to help you. GL!
Holy carp this country is not going to make it. If this wasn't your real life I would feel like we are watching an episode of Bill Maher. You've got to be kidding me. Are their any lawyers on this blog that can help out here?
Hi Brandi! The medical insurance here is an incredible mess. I would apply for a waiver as some of the other posters have mentioned. It's called "Institutional Deeming" and gives children full scope Medi-Cal coverage without income considerations from the parents. Here is a link: http://www.lanterman.org/uploads/lntrmn_med_waiver_eng_final_aug2010.pdf
The Regional Center (it's SARC in Santa Clara County) can help you with the application or modification of your current Medi-Cal. Please write me if you want more information! Thinking of you! Maureen
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