Monday, September 3, 2007

Medical Bills and Insurance

(taking a deep breath)

First let me say that I used to be an insurance agent (main focus on auto, home and life). I love the idea of insurance, paying ahead of time so you are covered "just in case". I used to be an insurance junkie. Maximum coverage on auto and home, disability, liability umbrellas and let's not forget life insurance. We had it all. Having taken many claims, for all types of issues, I have seen what good coverage can do for a family during the worst times in their lives.

Then there is health insurance. Ugh!!!

When I was pregnant with Paige, we were paying for our own health insurance. An HMO. They paid for every bit of my prenatal care, every bit of *my* hospital stay when my water broke and every bit of my c-section.

Then comes Paige's NICU bills. Ouch. Her total bill was over $500,000. Insurance would not pay for any meds used "off label". Ummm... that accounts for almost all meds used in the NICU!

After all was said and done, we owed a boat load of money to the hospital. They refused to work with us. I called the insurance company. They refused to work with us. We spent the next year trying to pay off this enormous debt, along with all of the on-going medical bills that preemie families encounter in the beginning. Even though we had insurance, the co-pays and non covered items buried us. Then there are the bills that were piling up from the credit cards. We charged gas, food, etc while we were going back and forth to the NICU (90 miles away) for 78 days. We finally filed bankruptcy.

Every year our health insurance premiums went up. Since Paige was uninsurable, we were forced to pay out almost $1,000 per month in order to keep the policy! This was on top of paying the bills that they did not cover. Oh, the prescription coverage... max. the insurance company paid was $500 per year. Paige has Epilepsy. Two months of Trileptal and one fill of her rescue meds and we were over our limit!

After a few years hubby got a job with a very large company and one of the perks was health insurance! Whew, finally some relief.

Or so I thought.

Between our required out of pocket costs and paying for therapies that were not covered, we were still struggling. Then there are the co-pays. $30 for each specialist. Doesn't sound like much, right? But, when you see 10 specialists in one month, have an out-patient test done and have a few therapies, total medical bills for the month could easily top $1,000. I am thankful for the months when we only have to see a few specialists.

What about all of the on-going needs that insurance companies do not cover? What about doctors that are out of network when you don't have any doctors in your area who are in network?

Don't talk to me about state waivers... most all states have their criteria set so hardly anyone can qualify. Don't talk to me about financial assistance... hubby earns too much money and hardly any group will look beyond the paycheck and take the time to see how much we spend out of our own pocket.

We have it easy. I know of many families who struggle more than we do.

The only tip I can offer is to appeal every decision your insurance company makes. If you are not satisfied with the outcome, file a complaint with your state's Department of Insurance. It's easy to do. Use the search words "[insert your state here] department of insurance". You can even file the complaint on line. We have gotten a few big bills covered this way.

Financial strain... definitely needs to be included when discussing the list of long term issues related to prematurity!

(ok, before I end here, I know someone will email me or leave a comment that they feel that I am bitter about my daughter surviving. Move on people. I love my daughter. But that does not mean I cannot discuss our daily struggles.)


Stacy said...

I forgot to add a few tips given to us by an employee of a government agency...

She suggested that we get a divorce, set hubby's new address out of our house and then I could file as a single parent.

Her other suggestion was that hubby quit his job (with good pay) and get a low paying job so we could qualify financially.

After hearing her suggestions I was quiet. She then told me that she has many parents take her advice so the government can help them.

We chose to not take her advice.

Helen Harrison said...

I am currently at work on a presentation for an upcoming ethics forum, and I would like to hear more about insurance companies and their denial of off-label/experimental NICU treatments. As Stacy mentioned, almost every treatment given in the NICU could be so considered.

I didn't realize this was happening and think it has definite ethical implications.

If any of you have had experience with insurance denials of this sort, please send me specifics at

I would also be interested in hearing the average annual costs of post-NICU care for your preemies.

And, as we share our accounts of financial woe, keep in mind that others are making a fortune from our children's NICU treatment.

For example -- some of you may have had neonatologists who work for a company called Pediatrix, a for-profit company traded on the NYSE.

I have been watching their stock prices for the last few months, and have noticed that Pediatrix has been doing mighty well in an otherwise problematic market.

And I'm not the only one watching Pediatrix: the SEC has launched an
investigation and has apparently caught the Pediatrix CEO and others in a stock options back-dating scheme that, allegedly, led to 33 million in ill-gotten gains.
The CEO's wife, a neonatologist, has recently had to return more than half a million dollars.

For more, see:

The Preemie Experiment said...

Helen, we had Humana HMO when Paige was born (almost 9 years ago). They were the ones who denied all meds used off label. Theo, caffiene, etc.. all not covered.

Out of Paige's entire hospital bill, the insurance company refused to pay a little over $75,000. It was a sickening experience to go through after having a preemie!!

I have not heard of others having this same problem in recent years. I wonder if the industry changed their ways?

23wktwins'mommy said...

I don't know how we lucked out so much, but we live in Massachusetts and we don't experience any of these problems. B/C of their low birth weight, S&E automatically qualified for SSI, which in our state means they automatically get free health care, which is called MassHealth. I have health insurance through my employer, which I still have, and the kids are also on it and have been since birth. So we have our insurance and then MassHealth secondary for them. We pay zero in copays b/c of the MassHealth, which covers copays and all medications as long as the Dr. gets prior approval if they are not usually covered, which we have never had a problem with, minus an iron suppliment, which the NICU was suppose to get approved but didn't, but it was like $15. MassHealth also covers anything toward our deductible. Also, since the kiddos have MassHealth, they automatically get WIC, which covers the cost of their formula and cereal every month. In addition, b/c MassHealth wants us to keep my primary insurance for the kids so they don't have to cover all of their medical bills, they reimburse me for what I pay out of my pay check for the family health insurance plan through my job. Even if I lose or quit my job, MassHealth told me they would pay the cost of COBRA, so that I would continue to have our primary insurance. Even though SSI is usually based on the finances of the parents, because of their low borth weight they did not even look at our finances when they began MassHealth coverage at birth. In order to qualify for financial benefits through SSI they do look at finances, but for the free health insurance it doesn't matter what you make as long as the children have medical needs that qualify them for a program that protects their MassHealth coverage which is called Kaliegh Mulligan.
I don't know why some states recognize the financial impossibilities related to medical care for preemies in the NICU and even as they become "ex preemies." The multiple specialists, therapies, and procedures cost a fortune. In Mass there is also a program called the catastrophic illness relief fund that protects families with children who have medical issues. The eligibilty mandates that the family's out-of-pocket expenses related to their child’s medical condition must be more than 10% of the family's gross annual income up to $100,000 and 15% of any portion of the annual family income that is above $100,000, in a given twelve month period. It would be nice if families with children with medical needs were all treated equally across states. In the meantime I guess I won't be moving out of Massachusetts any time soon.

3 good eggs said...
This comment has been removed by the author.
3 good eggs said...

You gotta love the "tips" from the governemnt agent. Its interesting to me that they tell people how to beat their own system.

MommaWriter said...

Although it was a year-long battle to get most of Gavin's NICU bills (totalling more than $1M) covered by our insurance, I think we ended up paying only about $700 of the entire thing. We were very, very fortunate to be able to talk the insurance company (Aetna) into covering the doctors they considered "out of network" as though they were in network.

I was furious that they'd try to make us pay when we had absolutely no choice which doctors Gavin was given in a hospital that was "in network".

In the end, I found myself an angelic customer service rep (most of them sucked), who gave me her direct number against company policy and worked on our case over the weekend (although one of the managers told me that wasn't possible). She sorted out all our gazillion bills one by one. Her name was Cassandra.

By the time my daughter was born, Aetna had moved all of its sucky customer service operations from Fresno, CA to Georgia (I think). The people at the new office were great.

My daughter was also born at a community hospital that didn't have billing procedures as ridiculous as Stanford's. There wasn't a single NICU claim I had to call them about. We got off easy again...although I imagine Cassandra probably lost her job in Fresno, which was a pity. I had started sending her holiday cards because I was so eternally grateful for her help when I was in such great need.

Our daughter? Her name is Cassandra. : )

Stacey (the one with the 'e')

Anonymous said...

Oh my.... how awful for families to have the financial stress along with the preemie strees. :(
I am in Australia, and have private health insurance but even if I had none (despite my good income) my daughter (27 weeker) would have had exactly the same care. Here, private or public patient, the NICU was the same. No cost at all. All drugs etc. All ongoing care. Free. Doctors bills & specialists have to be paid but are then claimed by from the government.
My daughter's care cost my insurance company about $200 000 in hospital. No cost to us at all. The private health insurance was only really useful to me, as I had a month in hospital earlier & the private Health got me a private room with all the fancy trimmings. :)

Our health system here is *not the greatest*, but posts like yours certainly remind me of how easy we get it, health-wise.

Best wishes...

Nancy Brown said...

With our ongoing medical issues we are buried financially. Its funny to see the "help" offered to transplant patients and what not. NOTHING is there for the parents of preemies. It isn't like the MOD is going to help. They focus on research ( as i was so rudely told when I asked if they even had a support group) Ty has had a partial skull recontruction as a result of being a preemie NOT to mention a year later when it didn't work a TOTAL skull reconstruction. it doesn't even phase me at this point to get a bill for ten grand and toss it to the side. There is no way in HELL I can just write a check for that amount. IHC ( the monopoly for health care in utah) has over 100 accounts for us and I have been sent to collections with nasty letters telling me to pay up. I can also make payment plans. I will be writing a check for 15 dollars a month for the rest of our life.

We are in the same boat with the copays. We pay 20 a specialty visit. Last month we paid out 80 bucks just in co pays. Its the most frustrating part of having a special kid.

Oh and our insurance thinks that AFO's are cosmetic and they won't pay but if we need a wheelchair they will pay. I am SOOOOO sick of fighting for every bit of help for my child. We did get medicaid for 1 year. But that was it. The rest was up to us.....

Nancy Brown said...

With our ongoing medical issues we are buried financially. Its funny to see the "help" offered to transplant patients and what not. NOTHING is there for the parents of preemies. It isn't like the MOD is going to help. They focus on research ( as i was so rudely told when I asked if they even had a support group) Ty has had a partial skull recontruction as a result of being a preemie NOT to mention a year later when it didn't work a TOTAL skull reconstruction. it doesn't even phase me at this point to get a bill for ten grand and toss it to the side. There is no way in HELL I can just write a check for that amount. IHC ( the monopoly for health care in utah) has over 100 accounts for us and I have been sent to collections with nasty letters telling me to pay up. I can also make payment plans. I will be writing a check for 15 dollars a month for the rest of our life.

We are in the same boat with the copays. We pay 20 a specialty visit. Last month we paid out 80 bucks just in co pays. Its the most frustrating part of having a special kid.

Oh and our insurance thinks that AFO's are cosmetic and they won't pay but if we need a wheelchair they will pay. I am SOOOOO sick of fighting for every bit of help for my child. We did get medicaid for 1 year. But that was it. The rest was up to us.....

terri w/2 said...

The insurance thing hit our family as well. .but in a different sort of way. .

My daughters were covered under my ex-husband's health insurance until age 19, at which point they then received Medicaid due to their disabilities. Medicaid in our state does cover things like prescriptions, necessary Dr visits, hospitalizations, etc., so that is great.

Neither one of my duaghters has dental coverage. Nothing.

We battle for everything else - any type of equipment, in-home nursing, respite - it's a lengthy exhausting battle with our local social services program. We parents are made to feel like parasites draining the system. Ironically, it's the system set up by the very government that insisted that our infants be aggressively saved (Baby Doe). It is a "save em but don't serve em" mentality when it comes to life-long care post-NICU.

I believe that micro preemies who end up disabled should have some type of government compensation through a "Baby Doe Survivors Fund" - everything families needed would be supplied - wheelchair accessible housing, wheelchair accessible vans, nursing care, respite care, wheelchairs, standers, braces, dental care - you name it, it's done! In addition, families should have a huge tax deduction if they are caring for children with disabilities, as it is so expensive to continuously pay the out of pocket things that don't really qualify for "medical expenses". .I could go on and on.

In addition, when my ex and I divorced, I was left without adequate health insurance - no longer employed (due to caregiving of our disabled children), no insurance. From research I had done a few years back, caregiving parents (usually the mother) often face poverty due to the years spent out of the workforce..another preemie casualty.

future of hope said...

Terri W/2 wrote: I believe that micro preemies who end up disabled should have some type of government compensation through a "Baby Doe Survivors Fund" - everything families needed would be supplied - wheelchair accessible housing, wheelchair accessible vans, nursing care, respite care, wheelchairs, standers, braces, dental care - you name it, it's done!

Nice idea, very nice idea - but where would the funding come from???? And why would I, raising my multiply handicapped former preemie, need and deserve the help anymore than my friend down the street, who is raising an equally multi-handicapped but full-term meconium aspiration child? Or the family that had perfectly average children, until an auto accident left one paralyzed and in a wheelchair, with multiple and complicated needs? The fact is, we are all in the same boat. We all NEED HELP. I'm just not comfortable saying that we are OWED anything.

Helen Harrison said...

To Future of Hope:

I think all of the situations you describe should be fully funded.

As for "owing": Families and physicians are now legally required (at least according to some interpretations of Baby Doe) to provide "heroic" life-saving medical treatment in cases where it was not previously mandated. If the saving of the lives is going to be legally forced (sometimes against the better judgment of parents and doctors), then this treatment, along with the life-long services required by the survivors, should be fully funded.

If taxpayers want all preemies and other marginally viable neonates saved at all costs (and it is not at all clear that they do), then they, the taxpayers, also have a responsibility to the families who are left to care for the survivors.

Aidan's mom said...

How stressful to have this on your plate along with just having a preemie! Ugh! We have been very fortunate in that both companies my husband has worked for had top of the line insurance. I feel spoiled after reading all of this because we have had every dime covered (not only of his NICU stay, but everything since). I have never had to fight to have any bill paid.

I really feel for the parents who are dealt this double blow.


chris and Vic said...

Last time this topic came up, we were going to talk about waivers and SCHIP, weren't we?

Does anybody have experience with either of these 2 programs? If so, are they available in all states?

What about social security disability pmts?

For Vic, I have him on my private dental coverage, my insurance. Otherwise, he is covered in WI under Medicaid (Title XIX). Does anyone else have that plan?
Chris and Vic

Chris and Vic said...

Is there a legislator in your state, any/every state, who is on record as wanting universal healthcare? Find out who that is.

Send that person a link to this post with replies . . . and ask them to respond to you/to the posts.

For that matter, Hillary and Barack Obama should receive a link, read our stories and respond
--in order for the needs to be realized and the big picture to get fixed . . .

Some of us are lucky and some of us are terribly unlucky, it seems. That is a terrible indictment of our system. It is not even-handed, and you are at the mercy of the company you work for and whatever insurance plan they hand you. And what state you live in (Medicaid only reimburses $0.13-$0.14 on the dollar in my state, Wisconsin--that is terribly low, and some docs won't take your kid on for that reason).

It is an ethical minefield!
Chris and Vic

The Preemie Experiment said...

Chris and Vic wrote: "Last time this topic came up, we were going to talk about waivers and SCHIP, weren't we?"

HI Chris,

We used to live in Illinois. Waivers are next to impossible to get and, as of 3 years ago, they were dependent on you being poor. It was the office of one of those waivers that we were told to either get divorced or have hubby quit his job and work part time at Walmart.

Social Security Disability, another impossibility for our kids who are on the medical fence.

SCHIP-another program that is based on income in almost every state.


We now live in Kentucky. There is nothing.

I have written our state reps on many occasions and have gotten the lovely generic letter in return. I won't give up though.

Terri w/2 wrote: "I believe that micro preemies who end up disabled should have some type of government compensation through a "Baby Doe Survivors Fund""

I think the largest reason this would never see the light of day, any time soon, is because it is parents who ask for their child to be saved. I was one of them. I think with more public education, the ratio of parents who want their child to be saved and those who choose comfort care would start to change. Maybe then more support would be put into place.

chris and Vic said...

Did anyone see the Highlight Health piece on SCHIP? It was linked at Pediatric Grand Rounds, put up on Sun. by Clark Bartram at Unintelligent Design. I cannot get in to Highlight Health at all, to read any of the submissions, or look up the SCHIP piece--has anybody else got in? Is there anything there on this topic that would be helpful to any one of the responders to Stacy's post?
Chris and Vic

Anonymous said...

The day after my boys were born at 25 weeks, a social worker appeared in my room. I happened to know her because her husband and I were on the local ACLU board together (donning flame retardant clothing here). Until she walked in the room, she hadn’t put two and two together, so it’s not like I was receiving special treatment. Her purpose was to learn what insurance we had, to get us signed up for Social Security and Medicaid. Since our boys would be in the hospital for more than 30 days, they were eligible for SSI. Our income was not taken into account. Back then; we also got checks of almost $500.00 for each of them as well. I believe now, you receive close to $40.00 per month if your children are not in the home.

So, our private insurance, which we paid for in full each month, was primary and Medicaid was secondary. We had some lingering bills for my stay but nothing major. Somewhere I have a 3-inch think file of EOBs (Explanation of Benefits) forms for their stay. Since they also had Medicaid, no one could bill us for any balance owed. However…..

They were discharged in November and in January; we started a new insurance year. We had a $1000 deducible, then it was 80/20. After $1000 in co-pays, we were covered in full. As long as we used a participating provider. Of course, immunizations and well baby visits weren’t covered. And, not one penny of those costs went toward our $1000 deducible. Worse was when we went across the state to have a sclera buckle put on my child’s eye. After being sedated, the doctor took a better look at his eye and decided that the retina would not detach and that the benefit did NOT out weigh the harm by placing the buckle. They kept him overnight, then let us go home. Unfortunately, according to the insurance company, one does not need to be sedated and hospitalized for an eye exam. Therefore, we will not pay. They did not budge on that one. Luckily, Medicaid was still in force and they paid. Even had our insurance paid, we would have paid the first $1,000 and then 20% of the remainder. Let’s not even get into non-participating providers who charge double and triple of what the insurance company considers customary and reasonable so that on a $2,500 bill, you end up paying $2,000.

After 5 years, we were $70,000 in debt. We sold some assets (it’s a long story and I am bound by some confidentiality agreements) and paid off the debt. We then managed to rack up another $50,000-60,000. Paid it off by selling more of those confidential assets. (Yes, it was all legal!!!)

Now, dh is disabled, we are trying to live off his disability. I lost my last job 18 months ago but have been trying to keep dh’s business going. I really can’t do it since I’m not an electronics’ expert. Dh has had a couple of surgeries in the meantime. I have 5 kids, 4 of whom are also disabled. I have no health insurance. I haven’t seen a doctor in 3 years. We owe more on unsecured debt than we owe on our house. We can’t file bankruptcy unless we divorce. I need to save the business assets because we can’t live on the $1,500 a month we get in disability. Job hunting has not been going well.

Dh now has Medicare HMO and the kids have Medicaid. No bills for now. Thank God.

One of my boys has a Waiver. We got lucky. I get 186 hours per month of in-home respite care. But, only for that child. He also goes to a respite home one night a week. I also have to allow the local community mental heath people into my house once a month to review the record keeping that the in-home respite providers keep. (Well it’s an excuse to clean up once a month!)

Due to the business property I am not entitled to Tanff funds or food stamps. And yes, I filed for divorce on August 2, 2007. There is a waiting period and then we expect to get it finalized. I have become one of the 90%+. Even though, it’s just to save our skins.

Posting as Anonymous so no one can link this to me.

The Preemie Experiment said...

Chris and Vic wrote: "Did anyone see the Highlight Health piece on SCHIP?"

Here's a link to the post on Highlight Health.

The Preemie Experiment said...

Anonymous wrote: "they were eligible for SSI. Our income was not taken into account. Back then; we also got checks of almost $500.00 for each of them as well."

We also received $500 for each month that Paige was in the NICU. Income was not a factor with this portion of the benefit. After we got home the checks continued. After a few months we received a letter saying that she no longer qualified because of my husband's income. They also asked us to refund all monies sent to us after her discharge date. We never knew this would happen. The money was spent. We fought it and lost. It didn't matter to them that they never told us, nor sent us any printed material regarding eligability. They were right and we had 30 days to mail them a check.

A month after that fiasco we received a letter stating that we may qualify again.

No thanks.

Anonymous said...

Ahh. .this triggered a memory regarding SSI qualification while our girls were in the NICU. No one told us that SSI would kick in while our girls were hospitalized, until I ran into another parent by accident who did know. I immediately went to our local SSI office, and the young "barbieish" gal who processed our paperwork was really irritated - she claimed that just because they were premature didn't mean they qualified for SSI, afterall they're not "disabled." I pushed and she found out, yes, indeed they did qualify until they were discharged.

Well. . several months later discharge occurred for our daughter who was very, very involved. . needed round-the-clock care for various medical issues, plus her twin to care for. I was completely exhausted - mentally, physically - basically going through the motions of caregiving in a fog.

One morning a week after discharge, a phone call came from the gal at the SSI office - she was completely unglued at the fact that I had failed to call them in the past week to let them know our daughter had been discharged. She reamed me up and down. (Apparently my lapse was interpreted as some sort of major theivery.) I finally stopped her and said "Mrs. Gross, are you ALWAYS this rude?" Dead silence. She immediately apologized and backed down. Interestingly, I've used this phrase throughout the years in various settings - school IEPs, with rude insurance people, etc. Always the same result - they can't answer yes or no, and it shuts them right down. This was my first lesson in advocacy

twinsx2 said...

What is it about these people? There job is to assist and provide benefits. You'd think that they had to come up with the cash themselves. These programs are here to assist us.

I was told that I never called on one of my twins so I had to pay back all the money. That was just crazy. When I first called, from the hospital, I was told that we weren't eligible. After I was discharged, I got a call at home saying the worker was incorrect, we were eligible.

Finally, after I went down in person, they checked both files and found out that I had called shortly after birth and I was entitled to checks for both twins.

I brought my tax returns and asked if they used the gross income or taxable income to determine benefits. The worker looked at me and said, "This is welfare." I said, I don't make the rules, I just play by them. Apparenlty making $36,000 a year for a family of 4, when two members were disabled babies was just too much money in his eyes.

Carla said...

We were lucky in that we were in the military when the twins were born so Tricare paid for ALL medical expenses. (Until we got out of the army when they were about 2 years old.) We were also unlucky in that we were living in Germany so we could not get SSI until we got back to the states. Our son has been recieving SSI for the past 5 years. Recently our income increased a little--apparently way too much as far as Social Security is concerned--but it doesn't SEEM like we've gotten rich over night. They sent us a statement about a year ago stating how much money we make and how much our SSI check should be. It seemed accurate so I assumed everything was OK. Six months later they looked at our income again, crunched some more numbers, and found out that we were making too much. Therefore we owed them $4,000, which we can't afford to pay.

Since Jacob WAS recieving SSI, he still qualified for medicaid under some "loophole category". I'm still working on getting the other 2 accepted under CHIP. They should qualify as far as I know; just a matter of more paperwork. PA has a great CHIP program: all kids qualify. There are sliding scale fees--for example a family of five still gets free insurance for the kids if they make up to $48,000 a year. They have to pay between about $30-$60 a month (per kid) if they make between $49,000-$72,000 with very low copays. And yes, therapies, glasses, AFO's, and dentists are included. If you make over $72,000 or whatever the limit is for your category; you have to pay for coverage at cost; it still covers everything, but with higher copays and premiums.

terri w/2 said...

One of the big issues we found with insurance when our less involved daughter (mild/mod CP, NLD, AS) turned 18 was this - she was too disabled to attend college fulltime, and not disabled enough to qualify for SSI. She was one of the "loophole" kids. Unless she lived with her father (not me) most of the time, or if she attended college fulltime, she could continue coverage under her father's insurance. She did not want to live with him, and because of her disabilities, could only manage college part-time, so insurance cancelled her.

Thankfully, we appealed the SSI decision and won, but it was extremely scarey, as she would have been left with no medical coverage AT ALL if it weren't for qualifying for SSI and thereby automatically qualifying for MA.


I am sick of hearing about disability this, and disability that, and oh poor me this, and oh poor me that - If your child can walk, and talk, and think - be thankful! Unless you really think that your child would be better off dead, then shut up! You chose to have them, I didn't! They are not my responsiblity! MY CHILDREN (all 8 of them) are. Yours are not! You got pregnant, you gave birth, and you were responsible from that moment onward. To claim anyone else is responsible for the consequences of your actions is insane.

Emily said...

It's funny that I should read this post tonight when we just finished our re-enrollement for my husband's health insurance policy. We "got off easy" in terms of out of pocket costs. Noah quailfied for SSI and Medicaid while in the NICU and continues to qualify for Medicaid (I'm told because of his disability, but I don't really get that. I mean, they don't cover ALL disabled kids, why us?). I live in fear that someday we will lose the state insurance. If that happens our monthly out of pocket expenses would be greater than my husband's take home pay. We have relatively good private insurance. They cover a lot and the copays are not terrible, but they do add up quickly. I don't know how some of you do it.

Helen Harrison said...

To "The General Public":

Suppose your child *can't* walk, talk and/or think...

Or suppose your salvaged child suffers horribly, cannot live independently, and wishes s/he were dead...

Suppose you went into the NICU uninformed or falsely informed...

Suppose you *didn't* want your preemie saved for this sort of suffering, or for the greater glory and profit of neonatology, but you were misled...or given no choices...

And then suppose, as you seem to be claiming, that *you* don't feel people/families coping with disability should have societal help, and you are just, "sick of hearing about disability this and disability that"... and, yet, suppose, you continue reading and commenting to this blog...

What are we to think of you? What is your story? Do you have a disabled preemie? Do you get any societal help with your situation? Why, exactly, should we be listening to you?

What would you suggest then?

Jennifer said...

Only in America would people want MORE government involvement in their everyday affairs...

The same government that is making my generation pay into a program (Social Security) with the understanding that it will not be there for us when I am eligible to draw from it (but still pay into it so we can waste your money)...

The same government spending millions of dollars (and lives) in a largely unpopular war...

The same government who gave themselves freedom to step OVER the constitution/bill of rights and wire tap/investigate ANYONE they want for ANY reason...

Why would you want THAT government to then have control of your health care? Because the current system doesn't work? True, it doesn't work as it should in all cases but that is largely due to government regulations...

The latter of that being the current generations unwillingness to prepare for 'the worst case scenario'.

The government is currently investigating ways to help people out of 'bad loans' - which will, undoubtedly, cost tax payers money in some way shape or form (probably without their knowledge) because the people defaulting on those loans failed to surround themselves with a financial security blanket - money in savings (yes, tens of thousands of dollars are needed) and health insurance that can cover the worst...

It is sad that when people need the security blanket they don't have they cry 'poor me' and demand government assistance... when even that government assistance is stretched far too thin...

Yes, the current system is broken. Yes the costs are much too high and yes change is needed. Government is almost NEVER the answer - our governments original function was to provide for the national defense and COMMON welfare. It's open to interpretation but I highly doubt caring for ex-preemies should be on that list...

Health care is not an entitlement. You think health care is expensive now? Just wait until its 'free'...

I agree with the previous poster, it was our decision to have children and we should be prepared to cover all costs associated with that. Our grandparents and previous generations relied heavily on private institutions (churches, non-profits) for help. We don't have those readily available because our our societies heavy reliability on GOVERNMENT programs and all the waste (and inaction) that goes with it. We need to change that...

First and foremost is NOT voting for people who will INCREASE governments involvement in our lives. Laws like Baby Doe etc. (which are WRONG... so very very wrong) would not exist in a minimalist government (the kind we were designed to have). We need to go back to that - demand better!

Helen Harrison said...

To Jennifer:

Only in America, among modern industrial nations, do we so neglect the well-being of our fellow human beings, and leave them to the dislocations of our profit-driven health care system.

It is, under our free market, much easier to get an appointment for cosmetic botox than it is to be treated for skin cancer. One of many examples.

I agree with you totally about "Baby Doe," but, otherwise, life is far too complex in modern societies to throw out the good that govenment can do, at least under political parties that aren't pledged to destroy it.

We can't leave the fate of the populace (our own fate) to the "wisdom" of the market. It is our personal well-being that is at risk if we do so.

Imagine a repeat of the 1918 flu epidemic, or bird flu, or antibiotic resistant TB -- and think of the resulting death and carnage if we are left to fend for ourselves without any societal intervention!

As for the "help" being offered in our current sub-prime mortgage crisis, it will, I predict, when all is said and done, turn out that most of the "welfare" will go to bail out predatory lenders and the hedge funds that have so richly prospered in the current unregulated environment.

Carla said...

To the general public:
First of all, I am VERY thankful that my son finally learned how to walk; as for talking and thinking for himself; those are relative terms that we are still working on.
I do not think that my twins would be better off dead. I do however wish that I was given choices in the NICU and could have made more informed decisions.
Most preemie parents would agree that the NICU may seem like a foreign country with its own language--try actually living in a foreign country and going to their NICU for 6 months.

That being said, Germany (from what I saw) has a great socialist healthcare system. No, I don't know how much they pay in taxes, but I do know that everyone gets the same QUALITY healthcare. People aren't pushed out of hospitals just because their insurance won't pay--therefore jeopordizing their health. It seems to me also that (at least around here) as long as you can qualify for a government healthcare program, it covers ALL necessary care as opposed to private insurance where you have to fight for every little thing.

I won't get into the whole war thing, but (not to be greedy) but we need to take care of America first and then the rest of the world.

No, we will not shut up, but if you don't want to listen then don't. You don't have to come here and read about "disability this and disability that" if you don't want to.

Long Term Listener said...

Let's hope that those who are err...shall we say less community minded...or are individualistic in their approach never need any help from anyone for anything.

Such an attitide seems such a hang over from the 1980's- sad to see that there is a deficit of Three Musketeering "One for all and all for one" attitude to life. Almost a moral vacuum - I can't help but wonder what has happened in a person's life to make them so alone.

Ahh well, as they don't need anyone - we don't need to think about them. :-)

Chris and Vic said...

We pool our resources for many purposes, healthcare being one purpose.

We call these pools "public," as in public education. We probably cannot imagine a society without provision for public education.

Yet we struggle to believe in public healthcare . . . What is the difference? If we have succeeded in pooling resources (yes, taxes) for public education, we can pool resources for public healthcare (universal healthcare).

When the pool gets very large, it gets very bureaucratic--hidebound with rules, like Medicare and Medicaid. (It is said that universal healthcare could be funded with all the leaking/hemorrhaging monies that are being wasted on bureaucracy in the present system.) Understanding the rules and playing by the rules are what we have been talking about here. For example, qualifications . . .

To me, then, it makes sense to create smaller, more manageable pools--statewide or county-wide or even smaller. MA has done some good work on this. CA has attempted. ME has attempted. And some smaller areas have received grants to set up model healthcare networks--isn't Martha's Vineyard one such place? My state, WI, has Badgercare, which has some plusses, but is still fraught with rules which create exclusions and stymie inclusions. SCHIP or CHIP should work in every state--it was designed to work everywhere, and if it was publicized and utilized, it might become a model for more universal coverage.

This is the only country in the West that doesn't embrace universal healthcare, that doesn't believe it is an entitlement, a basic right. Yet . . . we DO believe in FAPE and we make that work.

If our ex-preemies do not create the crisis which creates an impetus to provide universal healthcare to all, then the boomers, as they age, will . . .

To me, the enlightened view is to pay the taxes (or re-apportion the monies already being spent in healthcare, and re-design the system, creating smaller, more manageable systems, not a single payor system like Medicare/Medicaid).

Come on, people. We pay for public education. We pay for good roads. We pay for police protection, all with pooled money. In Denmark, they pay for daycare this way, as well. We can do better if we band together, creating political will, creating the pools of money to meet our unment needs. That is the definition of "society".
Chris and Vic

The Preemie Experiment said...

the general public wrote: "You got pregnant, you gave birth, and you were responsible from that moment onward. To claim anyone else is responsible for the consequences of your actions is insane. "

Are you really suggesting that children should be allowed to suffer because of the high cost of medical bills? What do you suggest parents do when they cannot afford to pay for necessary medical care? Should a child die because of the lack of adaquate money on the part of the parents?


If your child needed a surgery that you could not afford to pay for, would you be able to sit and watch your child suffer? Don't tell me you'd go out and get a 3rd job to pay for it... who will care for your children? When would you sleep?

Hard times fall on good people. We are not all free loaders.

twinsx2 said...

We have morphed into Universal Health Care! Point number 1:

The United States is the only industrialized nation that does not guarantee access to health care as a right of citizenship. 28 industrialized nations have single payer universal health care systems, while 1 (Germany) has a multipayer universal health care system. We actually have universal healthcare, it’s called Medicare and it’s considered the “sacred ox” to those 65 and above. No politician dares touch it.

The United States ranks poorly relative to other industrialized nations in health care despite having the best-trained health care providers and the best medical infrastructure of any industrialized nation.
The United States ranks 23rd in infant mortality, down from 12th in 1960 and 21st in 1990. The United States ranks 20th in life expectancy for women down from 1st in 1945 and 13th in 1960. The United States ranks 21st in life expectancy for men down from 1st in 1945 and 17th in 1960. Outcome studies on a variety of diseases, such as coronary artery disease, and renal failure show the United States to rank below Canada and a wide variety of industrialized nations.
Single payer universal health care costs would be lower than the current US system due to lower administrative costs. The United States spends 50 to 100% more on administration than single payer systems. By lowering these administrative costs the United States would have the ability to provide universal health care, without managed care, increase benefits and still save money.

The United States spends at least 40% more per capita on health care than any other industrialized country with universal health care. Federal studies by the Congressional Budget Office and the General Accounting office show that single payer universal health care would save 100 to 200 Billion dollars per year despite covering all the uninsured and increasing health care benefits. State studies by Massachusetts and Connecticut have shown that single payer universal health care would save 1 to 2 Billion dollars per year from the total medical expenses in those states despite covering all the uninsured and increasing health care benefits. The costs of health care in Canada as a % of GNP, which were identical to the United States when Canada changed to a single payer, universal health care system in 1971, have increased at a rate much lower than the United States, despite the US economy being much stronger than Canada’s.

twinsx2 said...


The US denies access to health care based on the ability to pay. Under a universal health care system all would access care. There would be no lines as in other industrialized countries due to the oversupply in our providers and infrastructure, and the willingness/ability of the United States to spend more on health care than other industrialized nations.
Studies reveal that citizens in universal health care systems have more doctor visits and more hospital days than in the US. Around 30% of Americans have problems accessing health care due to payment problems or access to care, far more than any other industrialized country. About 17% of our population is without health insurance. About 75% of ill uninsured people have trouble accessing/paying for health care. Comparisons of Difficulties Accessing Care Are Shown To Be Greater In The US Than Canada. Access to health care is directly related to income and race in the United States. As a result the poor and minorities have poorer health than the wealthy and the whites. There would be no lines under a universal health care system in the United States because we have about a 30% oversupply of medical equipment and surgeons, whereas demand would increase about 15%.

Single payer, universal health care administered by a state public health system would be much more democratic and much less intrusive than our current system. Consumers and providers would have a voice in determining benefits, rates and taxes. Problems with free choice, confidentiality and medical decision-making would be resolved.
There would be free choice of health care providers under a single payer universal health care system, unlike our current managed care system in which people are forced to see providers on the insurer’s panel to obtain medical benefits. There would be no management of care under a single payer, universal health care system unlike the current managed care system which mandates insurer preapproval for services thus undercutting patient confidentiality and taking health care decisions away from the health care provider and consumer. Although health care providers fees would be set as they are currently in 90% of cases, providers would have a means of negotiating fees unlike the current managed care system in which they are set in corporate board rooms with profits, not patient care, in mind. The insurer, which would be under the control of a diverse board representing consumers, providers, business and government, would decide taxes, fees and benefits. It would not be a government controlled system, although the government would have to approve the taxes. The system would be run by a public trust, not the government.

twinsx2 said...


Single payer universal health care is not socialized medicine. It is health care payment system, not a health care delivery system. Health care providers would be in fee for service practice, and would not be employees of the government, which would be socialized medicine. Single payer health care is not socialized medicine, any more than the public funding of education is socialized education, or the public funding of the defense industry is socialized defense.
For profit, managed care can not solve the US health care problems because health care is not a commodity that people shop for, and quality of care must always be compromised when the motivating factor for corporations is to save money through denial of care and decreasing provider costs. In addition managed care has introduced problems of patient confidentiality and disrupted the continuity of care through having limited provider networks.
Private for profit corporations are the least efficient deliverer of health care. They spend between 20 and 30% of premiums on administration and profits. The public sector is the most efficient. Medicare spends between 1 - 3% on administration. Non-profits shoot for 10% with most running at 14%. The same procedure in the same hospital the year after conversion from not-for profit to for-profit costs in between 20 to 35% more. Health care costs in the United States grew more in the United States under managed care in 1990 to 1996 than any other industrialized nation with single payer universal health care. The quality of health care in the US has deteriorated under managed care. Access problems have increased. The number of uninsured has dramatically increased (increase of 10 million to 43.4 million from 1989 to 1996, increase of 2.4% from 1989 to 1996- 16% in 1996 and increasing each year). The level of satisfaction with the US health care system is the lowest of any industrialized nation. 80% of citizens and 71% of doctors believe that managed care has caused quality of care to be compromised.


Anonymous said...

Oh my! The General Public is just as uncompassionate as I had feared!
If all parents waited until they could "afford" to have a multiply disabled child or even a feeder-grower preemie that required longterm NICU care and perhaps lifelong followup, then very few people would have children!
We waited for years and years to have children, because we wanted to be able to afford them first. So we bought a house and saved my salary and had plenty in the bank or so we thought. We even had catastrophic insurance coverage. But by the time our preemie twins were two years out of the NICU, we were essentially broke, and I could not work for having to care for my children just to insure their survival, not to mention that for the first three years I only got 2 to 4 hours sleep at night, IF I was lucky. For a while, we had to hire daytime help just so I could get a daytime nap. Even now, I almost never get more than 5 hours sleep, and I also work part-time from home to help pay bills and have a little savings.
We did not get SSI or other government aid to help with their NICU stay, but one did get Medicaid at around 18 months due to his severe disablities. But, even that program was new. Had it not been for his Medicaid as a secondary insurance, we would have gone bankrupt just trying to pay the co-pays and medical treatments that were not covered by our insurance. I might add that we are college grads, and my husband had a good job.
Sometimes, catastrophic things happen even to people who plan well, and there is nothing they can do to change their situation.
We even purchased a home well beneath what we could afford on two incomes, because "if anything ever happened" and I could not work, we would at least be able to make our house payments. That was the best financial decision we ever made.

terri w/2 said...

The General Public comment sounds suspiciously like an angry neonatologist who prefers that parents do not speak the truth about the actual hardships of prematurity.

And anonymous above (4:08), you are ABSOLUTELY correct. The care of these kiddos often bumps mothers out of the workforce - add to that an 85% divorce rate among parents of kids with disabilities, and it's a prescription for financial disaster for women. I know of many women of kids with disabilities who had to choose between giving their child up to the foster care system so they could be employed, or keeping their child at home and eeking out an existence on really meager child support and spousal maintenance. Benefits like health insurance? Retirement plans? . .when there is a disabled child in the family, often these things are distant memories no matter how well educated or how well you've planned.

alison said...

I'm going to try and get the insurance company to cover my daughters horse therapy. Any one have suggestions on how to make this happen? My daughter is 17 mos old (actual) was born at 24 weeks.

terri w/2 said...

We did do the horse therapy a number of years ago, however, it wasn't covered by insurance. There was a therapeutic horse riding program in our area that had trained volunteers - one stationed on each side of the horse while another person led the horse. My daughter really enjoyed it. I don't think the cost was very high - I'm thinking maybe $5 per sesson.

Aquatic therapy was another therapy that we used quite frequently, using a warm therapy pool - this WAS covered by insurance at that time.

twinsx2 said...

We get our hippotherapy at school. The school is out in the boonies and has several horses as well as a mechanical indoor horse. The school also has two indoor pools, a toddler pool and a traditional pool.

The school is out in the boonies because out of sight, out of mind. It serves the severely mentally impaired, the multiply impaired and autistic impaired.

It costs approximately $40,000 per student per year. It is a public school.

Nichole said...

I must say this has been a very interesting read. I took two main things from this. First, one has no idea, no clue, and no right to judge others situations unless they have walked in their shoes, and God forbid have a micropreemie or child with severe disabilites. Vote for whoever you need to to politically change the situation, but come on General Public, did you really say "I am sick of hearing about disability this, and disability that, and oh poor me this, and oh poor me that - If your child can walk, and talk, and think - be thankful!" I think we are talking in some cases about children who cannot "walk, talk, and think." You're missing the point if you're saying poor me, it's the "poor" children who pay the price. Second, I am more and more aware every day, every single day my twins are alive, thrive and develop, just how important every single day in the womb can be. What you read in pregnancy books, what you hear as you're laying flat on your back in the hospital bed doesn't mean a thing until you are living it or watching your children live a life of prematurity. I have to be honest and say that I am very grateful and thankful that my boys hung on, literally, until 31 weeks. We are facing very little long term disabilites at this time, physically or developmentally. However, I take it with a grain of salt when I hear "they're caught up, not preemies anymore." I work in the educational system and see what preemies, even 35 weekers, might face as they hit school age. What I'm taking from this is that at 26 weeks when I was told I had a 95% chance of delivering that night, to prepare, get a blessing, etc, I was thinking about my babies dying, not living at 26 weeks. If they had been born that night, they probably would have survived and now our world would be totally different. Yet I don't fully understand (and never will unless I live it) how difficult NICU decisions could be in the dead of night as your recovering from a micropreemie delivery. I imagine health insurance is the last thing on a parents mind, yet one thing they'll have to think about and potentially deal with for a long time.

alison said...

can you tell me where the school in the "boonies" is located? If I remember correctly you live in MA? I do as well and am very interested in learning about about this "public" school. Thanks in advance.

alison said...'s 23weeksmommy that is from MA...sorry for the error.

twinsx2 said...


That's correct. I don't live in MA. Sorry!.

kellarsmommy said...

I so feel your frustrations on this one..We had ins and Kellar also got medicaid b/c of his birthweight..I had ( still have ) tons of dr bills myself, I for some reason fell apart when I got married (haha) and then add to it my first son being born at 20 wks, then I got pg a few months later, visits for u/s at least once a week, cerclage placement, in and out of the hospital, flying to LR, being sent home 2 days later ( in labor ) ambulance ride to airport from hospital, flight to dallas, ambulance ride to baylor 3 days in the hospital for me, 117 days in the nicu for kellar...his bills totaled close to $1M and we were having a hard enough time trying to pay off my part..Medicaid saved us...SSI has helped, the amount Kellar gets doesn't pay for the gas it cost me to go to Dallas 3 times a month, but it's at least something...Our check was cut to below more than half when my hubby got another job, not that he brings in more money, it looks like it on paper but when you take out ins it's actually less, but they don't care about that..I love my son and wouldn't trade him for all the money in the world, I just wish there was some funding somewhere to help us get if not ahead at least out of medical debt..

Mom of 3 said...

Didn't your husband's company offer some type of PPO plan?

I work with a company that does patient advocacy for under/non insured families. I see situations like this everyday.

There was one family that had a preemie and their bill went over 1 million dollars. Not sure exactly how premature the infant was but he had a long hospital stay and other things done.

Of course we did help cut that bill in half or more with our negotiators working on behalf of family.

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