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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!

Marne

Orange Park Florida

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Naomi Ackieinchoate but earnestmarneVikram Cmarne the mom Recent comment authors
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Naomi Ackie
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Naomi Ackie

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… Read more »

Peter
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Peter

“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.

inchoate but earnest
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inchoate but earnest

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… Read more »

anon
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anon

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.

Nate
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Nate

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… Read more »

marne
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marne

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… Read more »

Nate
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Nate

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… Read more »

bev M.D.
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bev M.D.

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:
http://www.cchsnetwork.org/
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Central%20Hypoventilation%20Syndrome%2C%20Congenital
http://www.newtechpub.com/sleep/apnea/faq/snore/cchs.htm

Nate
Guest
Nate

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

Nate
Guest
Nate

if you dont mind sharing what service or treatment are they denying?

Nate
Guest
Nate

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… Read more »

Nate
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Nate

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.

Nate
Guest
Nate

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… Read more »

Vikram C
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Vikram C

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.

marne the mom
Guest
marne the mom

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… Read more »