Commentology: A mother’s plea for help

Picture 4 Desperate and stuck in the middle

I am the mother of an 11-month-old baby girl, Cassidy, who has CCHS (Congenital Central Hypoventilation Syndrome), a very
rare genetic mutation. Our union health care company recently changed
"paperwork" companies,at which time we were told that we were getting special pediatric respiratory services that we were not entitled to
and it [coverage] would end!

We scrambled to make other arrangements since Cassidy is ventilator-dependent and suffers from frequent "blue
spells" that require oxygen to be administered asap. We were finally able to get the pediatric respiratory coverage
in a state-sponsored policy for a fee. We were starting to breathe a little easier about the situation until we called my
husband's employer. We were told that we could not remove Cassidy from the original health policy because it was a self-funded
insurance plan and federal regulations prohibit switching to a different plan.

So here we stand stuck in the middle of a paperwork nightmare, and throughout this entire process it seems that everyone has
forgotten about little Cassidy, who is paying the price. No one we have spoken to has ever heard of these federal regulations before
but the fund's attorney insists that my daughter can not be removed. The state insurance commission claims that their hands are tied
because self-funded policies are beyond their jurisdiction. And she cannot be enrolled in the state-sponsored program as long as she
is covered under the original policy.

We were advised that perhaps we should consider giving her up for adoption, institutionalizing her,
or we could get share of cost Medicaid were we must spend more than we make each month to get assistance. I am not quite
sure where we could plug our daughter Cassidy's ventilator when we are homeless and living under a bridge.

What is wrong with the country? I am sick to my stomach and my daughter's future is uncertain. I just want to see her grow up!


Orange Park Florida

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28 replies »

  1. Dear Marne,
    After reading your blog I feel deeply moved at your current situation and frustrated that I can’t help you in the way that you need.
    I was born in London and have lived her all my life so don’t know the difficultie that the everyday American faces when it comes to health.
    It’s stories like you and your families that we don’t know about over here in England. I’m a training theatre-maker here in London and we are doing a piece in the Autumn based on the american healthcare system. I truly believe theatre can be as much a political firecracker as protesting.
    I believe it’s been a brave move for you to share your struggle on the internet and I was hoping you would be willing to take it a step further and allow me to interview you on your struggle with your health system, what you and your family need and what you expect as an american citizen from your own country.
    If you feel i’m intruding I scincerely apoligize that is not my intention. I merely wish to hear your story and use it to create awareness where there is none. If you are interested to share your story with me and other theatre makers please contact me on Naomiackie@hotmail.co.uk and I would be honoured to interview you on what you go through as an american mother, wife and citizen.
    I scincerely hope Baby Cassidy gets all the help she needs to grow up big and strong.
    Thank you for your time.
    Naomi Ackie

  2. “And that care should be free and her parents should get public payment to take off work while they care for her, and unicorns should fly her to all her appointments.”
    Interesting Nate when all your suggestions show her insider work-arounds on how to get her baby’s care paid for by someone else.

  3. Dear THCB kibitzers,
    Nate does not speak for, nor is he representative of, most employee benefits professionals. Nate is … odd. He needs help. Please forgive him.
    No one’s mentioned the CCHS Family Network yet. Marne might find they could help her with sorting out the situation she’s in.
    Marne doesn’t mention whether her husband contacted his union representatives to recount their situation. A case like this is ordinarily red meat for union officialdom; literally a chance to win one for the little guy. Failing that, her local congressperson can be counted on to be eager to help someone in just such a situation.
    This seems like a classic case of big, bumbling institutional buck-passing, and Marne has simply not yet reached people who can make solutions happen.
    Why, even a Nate-like being’s counsel might be helpful to Marne & her daugghter, as long as she didn’t bring up politics….

  4. Nate, I think we’re on the same page as far as asking for help in a polite and non-offensive/attacking manner, although I personally didn’t read the original letter with quite the same tone as you.
    Politics (I’m more liberal leaning) and emotion aside, I believe you’ve tried and done more to actually help this woman with her problem than any other commenter thus far, and I commend you for the time and effort that you’ve taken.

  5. it is change in your husbands or yours employement status. If you quit your job you can change your insurance elections.
    hour banks pay for the insurance but loss of job is still a qualifying event, you dont have to lose your insurance. The purpose was to allow people to change insurance if their income changes and they can’t afford the election they made when they had work, this is also why it applies to the husband or wife.
    You want to look under exclusions more then what is covered, the way plan docs are written everything medically necessary is usually covered unless listed in the exclusion section. The quesiton to ask is what in exclusions says home health and respitory therapy is not covered.

  6. i already attempted the change in employment option however my husband has 7 months worth of banked hours so if he quits his job we will remain on his policy for 7 months. i am very active with cchs network however this condition is so rare. some families live who live out of florida have had success with waiver programs. at this point I will more than likely have to find a lawyer familiar with ERISA. I have a very good attorney however her expertise our in state insurance issues I did find where the new healthcare provisons go into effect come September that they can not deny anything that is deemed medicaly neccessary.We are fighting for some home health care and respitory therapy. we had a case manager and we were able to get the coverage we needed however in april they changed the administration of the plan with out warning telling us they were only changing administrators and then the next thing we know her specialist are calling saying we were unisured and that is when we discovered they had acutally changed alot more than they led us to belive. Every one has been very sympathetic however they have stated we were recieving benefits not covered by the plan and they were very sorry. i am appealing under a provision in the plan that states it is medically neccesary and fiscally logical. We are appealing stating that home health and respitory is much less expensive than picu! By the way thank you so much to everyone for your assistance I truly appreciate it.

  7. Is there one hospital or provider billing the majority of this care? If so are we talking 10s of thousands a month? I’m not super familar with Florida HIPAA policies but they also might be an option. In some cases you can get the provider to pay the premium since they are charging so much in bills.
    Its also possible to get the trust and provider to reach a settlement, the provider will drastically cut their bill and the trust will agree to pay some monthly amount, say $5000. The trust avoids litigation, the provider gets some payment, and they both don’t end up looking like monsters.

  8. Good work, Nate. The insurance issues are beyond me but in case marne hasn’t seen these links there is a support org for this disease which may have some expertise in the financial issues involved. (One of the articles did mention that financial issues caused by limitations of insurance coverage are common in this condition.) It also has a list of U.S. experts in the condition. Frankly it is so rare I wonder if she would qualify for some study or clinical trial at a research center…..anyhow for what it’s worth here are the links:

  9. in regards to quiting your job a compasionate employer, yours, should be willing to let you quit then hire you back under the circumstances,
    I haven’t thoiught it through but you might not even have to quit….an fmla leave from your job could work as well, i’ll have to think through those ramifications

  10. next up is to attack the denial, you reference petitioning trustees for coverage, usually this is done as an appeal to an adverse benefit determination. That would imply they have already denied a claim, this is a formal benefit determination, i.e. refusal to pay a bill, not just saying it wont be covered over the phone. If they did in fact deny the service they would need to say why, usually not a covered benefit. This is very furtil ground as the courts side with the ill when any ambiguity is present in plan language. A good ERISA attorney can usually find a flaw in the plan doc, most are poorly written and given all the consideration of an afterthought.
    In your plan doc under exclusions is where they usually deny claims, if the language is not specific you can force them to cover it, at this point you should see an attorney, I would need to have an actual copy of your plan doc, any amendments, and the claim they are denying.
    It is hard to pay a claim for a period of time then without amending the plan stop.

  11. you can return to work right after you have the qualifying event by the way.
    Next option is a little trickier but should also work. Another qualifying event is substantial change in benefits, a major treatment like this should qualify, congress never really spelled out exactly what constituents such a change but life altering care like this should surely make the cut. This would again allow you to remove her from your husbands coverage.

  12. Hello Marne the mom, if they are using section 125 election as the reason to not let you out that should be very easy to fix. Please note I am not an attorney and can’t give legal advise, just share what I know.
    To make a mid year election changhe one must have a qualifying event. We’ll not consider birth and death as those are drastic for this sitution. The one that should be easiest would be change in employement of either parent. What is your work status, quiting your job, even for a week or two would create a qualifying event which would allow you to remove your daughter from your husbands covereage.
    Please be careful in the eligibility requirement for Florida Kids Care, some require you be without coverage for a period or time or take other coverage if available, if this plan does not have those provisions once you remove her you should qualify. They are usually pretty good at helping people get on so let them know what your doing and they should steer you around any potential pitfalls.

  13. Guys,
    Please help the lady. We will get other forums to debate our philosophical differences.
    Insurance coverage aside, I hope the family is researching into options of treating this condition. Maybe someone somewhere in the world has found some solution or just make life easier.

  14. i am the mom i am not stupid when i wrote this i had no idea it would be published. My husband is a union electrician and due to ERISA tax regluations we have been told we could not remove my dauther from this plan. Furthermore our plan does not have an open enrollment period. I am by no means savy in insurance or health care issues however I am learning. It is troublesome to me that my duaghters future is caught up in red tape. I have worked very hard to secure alteranative means of providing for my daughters astronomical health care needs and every attempt I make is met by another door slamming in my face. Her health care costs are more in a month than I make in a year. I have paid into the medicaid system since 1984 and it is upsetting to me that I can not purchase into to a seconadary policy for the needs that are not covered as well as that I have met many families who have never paid into the system and get their needs covered without question. I am desperate to find any one who can give me any insight into something else I can try. I have petetioned the trustees to reconsider covering her needs altought our policy does not provide coverage for the level of care she requires. She can not get a waiver such as the Katie Beckitt since the state of Florida waiver programs have about a 6 year wait and have very little funding available. I would be willing to use share cost medicaid but our share leaves us $300.00 per month for a mortgage, electric and food and if I were to get a second job to help pay the share cost the share of cost would then go up! I was prepared to get her on Florida Kids Care and we would of paid for this policy however we can not get on kids care because we can not get my daughter off of my husbands self funded policy. I am desperate!!!! and truthfully scared. My daughter requries that someone watch her at all times 24 hours a day 7 days a week ! there are no breaks and with her no second chances ! I open to any ideas so NATE how about coming up with a miracle for me!

  15. beginning this think blogging comments don’t lend themself to deep philosphical discussion.
    anon I think you would agree if you are one of those 999 calling AAA for help it is a good idea correct? Would you also agree that when they call AAA insulting them and questioning what is wrong with them is not a good way to ask for help.
    “Hello triple A, my car overheated in the middle of the desert becuase I forgot to put coolant in it what the heck is wring with you people, why did you let this happen?”
    We agree that is not how you ask for help right? So Marne was either not asking for help but making a political statement or was asking for help in a very non productive manner, being rude and not having any facts to actually assist her.
    Now the majority of this blog tilts one direction and would love nothing more then to have an insurance company bashing post to reaffirm how morally superior they are. Nothing productive ever comes from this but they all feel better about themselves. You have people like Karen blaming insurance companies when there wasn’t even one involved and Gary also taking this Union transgression as some excuse to attack insurance companies. Peter was typical Peter of course. This is typical liberal propoganda machine, print some sob story with so few facts you can’t check or verify anything then whip the clueless into a frenzy and demand change. Notice all three of them want to change insurance companies when they had nothing to do with this.
    People aren’t mad I’m curmudgeon they are pissed I rained on their pitty parade and ruined their daily fix of self grandizing. Now what is Peter, Karen, and Gary going to do to confirm their self worth? None of the three of them where ever going to do anything to actually help Marne. Call me curmudgeon, a self-rightous jerk, and ignorant but at the end of the day I am the only one to actually do anything to help her. If people want help maybe they should be nicer asking about it and not just expect it like it is owed to them. Then again actually solving problems is never a concern with liberals it is all about their effort and the number of speeches and meetings they have to discuss the problem that matters.
    I would hope the harsh correction she got in regards to her comments was well worth the free advise she got to actually resolve her problem, do you disagree on what is really important her anon?

  16. Agree with bev. I think Nate has worked long enough within the belly of the beast that everything is second nature to him, much like cars are to good mechanics. To the average car owner though, it’s still a black box. When something goes wrong, 999/1000 wouldn’t know what to do, other than call AAA. Too bad he has to be such a curmudgeon about it.

  17. While your asking the attorney if it is a section 125 issue you should also ask for them to cite where in the exclusions this is a non covered benefit. It is best if you submit an actual claim for the service and have them deny it then cite why and where it is supported and always have it done in writing. Every conversation should be followed up in writing and all answers are best provided in writing not phone calls. Can’t trust these evil unions.

  18. “What is wrong with the country?”
    This isn’t asking for help this is complaining and blaming.
    “She sounds like she’s willing to do whatever she has to to ensure her daughter’s well-being.”
    Except ask 3-4 simple questions that would shed light on the problem and actually resolve it.
    “They criticize HER for looking for support.”
    Which is it Karen is she looking for support or solutions? Support is your girlfriend giving you a hug while agreeing the guy was a jerk. Solutions is telling her to stop going out with slimeballs. Do you see the difference in results?
    If she wants to get her kid better then she would come on, provide the facts and info people need to help, then see what people can offer.
    If she wants to whine about how unfair life is and have a bunch of whiny liberals agree how evil insurance is then she did a great job. Her kid is no closer to getting help but the left feels proud for their compassionate support.
    FYI Karen, since your obviously a whiny liberal, there is no insurance company involved here. It’s a self funded Union Plan, so if you had even the slightest idea what you where talking about you would be shaming the evil unions who denied her innocent child the care she needs. I bet trying to figure that one out is making your head spin.
    Shame on clueless liberals to concerned about spewing talking points and dogma they can’t even read and get basic facts right.

  19. Half the people responding to this woman’s blog were attacking her. I just don’t understand it. This poor woman is at her whit’s end, trying to care for her daughter. She reaches out, most likely out of frustration, and what do people do? They criticize HER for looking for support. Her own lawyers can’t figure out the insurance “thing”. She sounds like she’s willing to do whatever she has to to ensure her daughter’s well-being. Shame on insurance companies! And shame on you self-rightous jerks!

  20. margalit that is such limo liberal BS. Most conservatives are not rich, every hear of a small part of the country called South, Midwest, and non coastal west? Put your silver spoon down for one sec and look at charity, most of which comes from conservatives, it’s not rich people its average people helping average people.

  21. “Conservatives sold the problem then move on to something else.”
    LOL… Is that a Freudian slip up there, Nate?
    I would say conservatives consider a problem being solved when the solution is working for most (rich) people, most of the time.
    Liberals just want 100% of folks to be satisfied, 100% of the time. Call them perfectionists, if you will.
    It is easy to succeed when your goals are limited by assessments of what is withing your reach without too much trouble.

  22. Gary maybe your just not very inteligent? Starters you don’t seem to know what the words self serving or ignorant mean. And I would be willing to bet you can’t back up your claim about common sense.
    ” Insurance companies rarely give truthful or correct answer. They make their money denying care.”
    These comments just prove your an idiot. Insurance companies deny a fraction of the number of claims that Medicare and SS do. You can’t produce anything to back up your hyberole that insurance companies rarely give truthful or correct answers.
    “But I do agree the complexity stymies even well educated people; the Joe Blows of the world have no chance.”
    Think about the issues she has, are they really that complex?
    Is it an ERISA plan, it clearly states this in the plan doc and is an easy question to ask.
    Who sponsors the plan, is also clearly identified
    Why was the claim denied, something else that is easy to find out
    If she is smart enough to learn what CCHS is then she is smart enough to get the above answers, insurance is no more complex then understanding medical conditions.
    ” This baby should have just been able to get care without its parents having to navigate the dark matter of the healthcare labyrinth.”
    And that care should be free and her parents should get public payment to take off work while they care for her, and unicorns should fly her to all her appointments. In case you haven’t heard Peter the world is in a bit of a debt crisis, it was thinking like yours that got it there.
    Difference between liberals and conservatives is liberals will whine on a blog about their problems and all feel bad for each other, and still have those prolems. Conservatives sold the problem then move on to something else.

  23. “In the time you spent complaing you could have found the correct information and solved the problem, that is the problem with the country..”
    Yes Nate, making health coverage as complex as possible that ordinary people can’t even rely on their “local experts”, and do not have your intricate acquired knowledge of the, “system” is what makes American healthcare the envy of the world. This baby should have just been able to get care without its parents having to navigate the dark matter of the healthcare labyrinth.

  24. Actually I think Nate was trying to help; he was doing pretty well till his last paragraph. (: But I do agree the complexity stymies even well educated people; the Joe Blows of the world have no chance.
    But, anyway, thanks Nate. This lady’s baby needs help.

  25. Dear Nate: You are what’s wrong with this country. Public health care safety nets such as medi-cal are completely screwed up. Insurance is so complex that even I as a physician have a very difficult time with it. I find your comments self serving, ignorant, and lacking in common sense. Insurance companies rarely give truthful or correct answer. They make their money denying care.

  26. ” The state insurance commission claims that their hands are tied because self-funded policies are beyond their jurisdiction.”
    Not sure if this was their exact words or how you heard it but this isn’t true, they have minimal jurisdiction over self funded ERISA plans, they have 100% control over non ERISA self funded plans. Depending on who sponsors your plan it might or might not be ERISA, the plan doc would tell you if it is.
    I assume the paperwork company you are referring to is the TPA. You refer to the plan as a Union plan but then called your husbands employer, exactly who is sponsoring the plan? Knowing this information is just as important as knowing your daughters illness. These facts make all the difference in the world.
    Was a claim ever actually denied? If you submit a claim under ERISA they have very strict procedures they must take in denying it, they must also give you the chance to appeal.
    Your explanation is missing so many pieces it doesn’t make any sense. I would bet what they actually said was you can’t drop her coverage until open enrollment or until you have a qualifying event. Ask their attorney if it is a section 125 issue. If the benefits are being paid pre-tax then your husband signed up for a section 125 premium reduction plan to avoid paying taxes on his contribution. Federal law does not allow him to change this deduction until open enrollment or qualifying event. If you confirm this is in fact what the problem is you have several options to get around it.
    In some rare cases the federal government does in fact prevent employers from pushing people to public plans. Its not the employers fault or self funding’s fault its the government trying to save money by forcing people onto private insurance plans.
    “What is wrong with the country?”
    In the time you spent complaing you could have found the correct information and solved the problem, that is the problem with the country, people not taking responsibility to solve their own problems, always expecting someone else to. If you haven’t even found out why it isn’t covered and why you can’t drop the plan how do you know they are correct? Aren’t those ansers the first thing you should be getting?