The Cost of Ongoing Medical Care-Who Pays?

Recently I found a new blog and spent some time reading the back posts. When I came across this post, over at White Coat Rants I felt the need to comment. Specifically it was the following statement made by the blog author that caused me to pause...

"Hospitals seem more and more willing to sue for medical debts. Should hospitals be able to force people into bankruptcy for the medical services that they provide?

A hospital is a business. Without money, the business goes bankrupt.
If you walk into a lawyer’s office, many times you’ll need a retainer or the lawyer won’t take your case. If the retainer runs out and you don’t pay, then the lawyer stops providing services.
If you walk into a supermarket, fill up your basket, and leave without paying, you’ll be arrested for theft.
Stop paying the guy to cut your lawn and you’ll have to do it yourself.
Why do people expect that medical care should be free if they don’t have any money?"

After reading all of the comments, I left one of my own.

"The comments are great and allow everyone to look at the situation from many angles.

I have another one though..

What about the parents of a child born extremely premature? Not only will you have the hospital bill but you may also have on-going medical care for the rest of their lives? What if both parents can’t work because there is no one to take care of the special needs child? Can one person really work enough hours to cover all of the bills?

What if said bills are higher than they would be if they were billed from another department? For example… nursing care is billed at a lower rate in the ICU than it is in the NICU? Is that fair? Should one department be allowed to charge higher even though the same skilled staff is used? Should one department be able to charge higher rates so the revenue will cover less lucrative departments?

What is a person to do? Deny care to their child? Let their child suffer?

Choose not to resuscitate because the parents will not be able to afford the care?"

To which the blog author wrote:

"States have SCHIP programs to help pay for care of children with costly medical problems."

That's when it hit me. People actually believe that the above mentioned program is the answer. Please don't head over to White Coat Rants in anger. The blog author seems to honestly feel that the program is working and helping people.

I, on the other hand, know differently. The program varies by state so my experience may not be the same as others have had. But, that system is broken and does not help all who need it. And, this blog author is not alone in their thinking. I can't even begin to count how many times people have assumed that we had Medicaid because of Paige's ongoing care.

When Paige was diagnosed with Epilepsy (4 years old) we were shocked to find out that our health insurance (which we paid for ourselves at over $1,000 per month) had an annual cap of $500 for prescriptions. Between her new meds and the rescue meds we had to have on hand, we blew through our allotted $500 in under 2 months. I had heard of the Katie Beckett waiver so I did some digging. I called our Medicaid office (in our previous state-Illinois) and was told that Illinois did not participate in that program. We were told that there was a similar program but we didn't qualify because my husband made too much money. But, they refused to take into account the ongoing medical bills that we were paying out, or the fact that we were paying for our own health insurance, which left us without enough money to eat at times. (Many of you have already heard me talk about how we lived on Spaghettios during that time)

When I asked (begged actually) the woman to help us she told us to get a divorse and have hubby say that he lives out of our house. This way his salary would not hinder us from getting help. When I told her that I didn't consider that to be a viable option she told me that many people do it. Her second suggestion was to have hubby quit his job and work at Walmart so we would qualify.

Again, I realize that all states are different. But at that time (almost 6 years ago) the total household income dictated whether or not you could qualify for help.

Hubby ended up leaving his job and taking one with a company that offered health insurance. But, that only solved our perscription problem. We still had the cost of the copays for each doc. At the time she had 9 of them! Add that to the cost of our portion of the ongoing tests and we are right back where we started.

When we moved to our current state of residence, I tried to get help again. Same problem... hubby makes too much money and the state refuses to look at how much you are paying out in continuing care.

And now we live in one of those states that adds interest to outstanding medical bills and sues if you don't pay.

Do I feel that I am entitled to medical care for my child without having to pay for said services? Of course not! It's a horrible feeling to know that you can't afford your child's medical bills.

But, where is the solution?

Again, I want to stress that I don't feel that the blog author deserves all of us running over there and leaving comments that are not helpful.

I would love to hear from everyone here.

Are you happy with the help you receive from state programs? (I have heard that PA is a good state to live in)

Do you have any suggestions for programs that you were able to qualify for and have been helpful?

How do you pay for the ongoing medical bills??

How about your NICU bill? Did insurance cover it for you? (Ours did not cover any meds used off label, which left us with a $75,000 pharmacy bill)

Full Potential

A few months back Chris (Chris and Vic) brought up the topic of "living up to ones full potential". I instantly thought that it would make a great, thought provoking, post. I settled in with my laptop, fully expecting to bang out the words with ease.

"Let them be who they are and find their way. They'll decide what their own full potential is and follow the path." It sounded so simple as I was writing it. Then I stopped to think about what I was saying. Could I really just let Paige follow her own path? Is that what a parent should do?

Does everyone have the ability to realize their own full potential, without direction?

I saved the post and decided to pick it back up again a few weeks later. I stared at the screen in hopes of continuing the post I had started. But, my feelings on the topic had changed. When Paige came home from the NICU I used to say, "I don't care if she shovels sh*t for a living, as long as she is happy." Did I think, back then, that shoveling manure was in her future? Would that be all she would be capable of doing?

So, does ones abilities dictate their full potential?

Life took over and I never finished the post. It wasn't until I received an email, from someone that I met a year ago in the blogworld, that opened my eyes to my part on the path to Paige's full potential. This person is an accomplished specialist and a former preemie. His long term issues are not visible in daily life, for the most part. But, he was embarking on a personal goal in a sport that is rough and he was concerned about his ability in one area, due to one lingering preemie issue. I was so proud of him for trying something so difficult. He never gave up and his perseverance paid off.

In the comments section of a recent post I mentioned that I recently made a pretty big parenting mistake. Paige asked if she could take ballet again. She was in it for a few years when she was 4-5 years old. It was fun watching her dance around and quite the tear jerker for hubby and I during her recital. The year after we moved we enrolled her in a ballet/tap group. She was older now and her limits were quite apparent. She could not properly stretch, nor could dance without pain. She asked to stop and we had no problems agreeing.

Well, jump ahead to the end of last month. Paige asked if she could take ballet again. While she was asking me she was dancing around looking so sweet. But, her limits are really apparent now. She cannot stretch her legs and the tightness in her muscles causes her pain, even when she is not doing anything strenuous like ballet. The kids she would be in class with would be much further along than her. She started begging to take ballet.

(here comes the huge parenting mistake) I told her no. *I* knew that it would cause her pain, both physically and mentally. *I* knew that she wouldn't be able to keep up. *I* knew that she would have to drop out of the class.

But, it wasn't until I received the above mentioned email that I realized my mistake. Who was I to dictate what Paige was capable of doing? Even though I was trying to protect her, was that the best possible way of handling it? I no longer think so.

I learned a lesson, thanks to one special person sharing his concerns and then his triumphs. I still can't decide how I feel about Paige living up to her full potential. I still can't fathom what her full potential may be.

I do know this though... I need to make sure I am not the one who limits the possibilities of what her full potential may be.

Thanks Chris for always making me think.

Thanks LS for sharing your news with me. There was a lesson for me to learn and you opened my eyes.

It's Worth Repeating

I first published this post way back on Feb. 7, 2007. Due to a recent email I received, which I will not be sharing, I will be reposting this entry. I hope it will help the author of the email as well as others who are feeling that they are the cause of their child's issues. You are not alone. If you found your way here through a search, I hope you will also share your story so others will know they are not alone.

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Invisible Issues Related to Prematurity

Wheelchairs, glasses, feeding tubes, leg braces... all are outward signs of prematurity . If you need services at school, you'll get them. If you go to the doctor, they listen to what you have to say. Neighbors understand why you are tired. Family offers to help.

Advances in medicine and interventions have lowered the number of children who need those devices. For this I am thankful. My daughter does not (currently) need any of the above (although she did wear leg braces for a few years).

But, there is another side to prematurity... Invisible issues. They are clear as day to us parents and the preemies that experience them but invisible to the outside world and largely ignored by the medical community.

anxiety disorders
sensory integration issues
psychiatric issues
behavior issues
fine motor delays
fatigue
feeding issues
weight and growth issues
reflux issues
head aches
autism spectrum disorders
coordination issues
sleep issues
severe constipation

Over the years I have heard many parents say that they were blamed for the above issues.

I am also one of those parents who was blamed. For a brief moment I believed it. (I must not be feeding her enough, I must be babying her, I am not strict enough, etc) But, as I started talking to other parents I realized that other preemies were suffering with the same issues.

If you are thinking, "these issues are not that bad" then you have never lived with a very young child who stabbed herself because her "thoughts" told her to. You have never lived with a child who has such severe constipation that, despite adult doses of Miralax, can still tear herself bloody when she has a bowel movement. You have never lived with a child who will drop to the floor and scream when hearing a voice on the loudspeaker. You have never lived with a child who will cry because she is so tired that she cannot run with the other children.

These invisible issues are what makes me continue to fight to get the word out. Why should any parent feel responsible, like I did, when the above issues are actually commonly reported by parents of preemies? Why should I stay quiet and let the doctors feel that preemies are fine after age 2? How will conditions improve? How do we expect the doctors to know?

I've been told that my posts sound angry. Since true emotion can be misunderstood, I want to be very clear. I am not angry. I was the one who chose to have the doctors save my daughter. As it stands right now, I cannot look at my daughter and honestly say that I would choose differently.

Frustration is the emotion that I feel. Frustration that misinformation is still the norm when it comes to preemies. I feel an incredible sense of duty to be a voice for future preemies and their parents. I am thankful that I am not alone in this passion.

More on Mental Health

Some of you may have heard about/read a recent news story about Terri Stimmel, a woman convicted of killing her roommates cat.

You may read the story and be shocked by her actions.

I, on the other hand, read that story and was immediately saddened by the fact that she had not had proper mental health help. The story quotes her as saying that she had "uncontrollable impulses". Could it have been OCD? Another issue? Could it have been prevented by medicine and counceling? (Both of which she is currently receiving.)

Fortunately she is finally getting the help that she deserves.

Unfortunately animals died, the owner of the cat is suffering and Terri's life will never be the same. She is painted as a monster but no one is addressing the real issue...

Our health care system is failing our most vulnerable people... those with mental health issues.

There is one fact (among others) that was left out of all of the news stories about Terri.... she was born premature. Yep, yet another former preemie with mental health issues.

I have been very open on this blog about Paige's struggle with anxiety and OCD. She has hurt herself, hurt her brother and had thoughts of hurting her father and I. She makes innapropriate statements in front of others. She has thoughts that are too scary for me to mention here. All because of her OCD "thoughts". There are times when I want to crawl in a hole, bury my head in the sand, deep below reality and never talk about it again.

Then I get letters from other adult preemies who thank me for being honest. They need to know they are not alone. The letters from parents of kids, who are the same age as Paige, hit me hard too (although I wholeheartedly appreciate each and every one of them).

The kids are hurting. Families are hurting.

Who will take care of our kids when they are adults and out on their own? When we die? What happens if they can't afford mental health care? What happens when they can't work because of mental health issues?

Our kids WILL grow up. There is an entire group of kiddos who were saved at the edge of viability who are now having issues like Paige.

Will the system be there for them?

It sure isn't there now. It wasn't there for Terri.

"When is my next test Mom?"

Below is a conversation between Paige and I while she was in the chair, at the dentist, waiting for the numbness to take effect, to get her tooth pulled.

Mom, when is my next test?

What test Paige? (thinking she was talking about homeschooling)

Any test.

(I paused to think) Hey, guess what? You don't have ANY tests scheduled. Wow, that must feel good.

But what about my EEG's?

You don't have one scheduled.

But I'm supposed to have one every year. The last one showed spikes.

Paige, they always show spikes. Remember the doctor said that they would always show spikes but that doesn't mean that you are having seizures. He said that we didn't need to come back unless we thought you were having seizures.

What about my blood tests Mom? Or my MRI's?

Nope. You don't need any.


But what about...

Honey, you really do not need any tests right now. You are doing great.


The dentist walks in. She tries to pull Paige's tooth but Paige ended up needing more novacaine (or whatever "caine" they use now). After 4 or 5 shots Paige is finally numb. The dentist struggles to get the tooth out (it was a back tooth that had such a bad infection that even a pulpectomy didn't work). Paige never struggles or cries even though the dentist really has to work the tooth to get it out. The dentist looks concerned but finally gets the tooth out. The dentist was visibly shaken. I wanted to cry. I have seen Paige endure a lot of medical procedures but this was harsh. Her little head was really being thrashed. Her small mouth was stretched so wide. It was horrific. But Paige remained calm.

The dentist leaves the room. Paige tries to sit up and her entire body starts to shake. Her eyes roll. This lasts for less than a minute. She whimpers, "mom, why am I shaking?". A few minutes later she sits up like nothing happened. The dentist came back in with Paige's tooth, all cleaned up. Paige spends a few minutes examining it with great excitement and then hops out of the chair and skips to the waiting room. While I'm making her next appointment (to get her spacer) she yells from the waiting room...


Mom, you forgot about my eye test. See, I knew I had a test coming.

When we got home she curled up on the couch for a short time but then decided to get up and play with her cousin. That was it. Through all of that trauma she only needed a few minutes to rest and she was fine. It was a huge tooth. But the trauma was all ours (mine and the dentist).

After we put the kids to bed I fell apart. Sobbing uncontrollably. Poor hubby didn't know what to do since I'm usually a rock when it comes to her medical procedures. I've had to be that way.

It was then that it hit me about my conversation with Paige. I was feeling so overwelmed after watching the procedure but also feeling overjoyed that we didn't have a test scheduled. This is the first time in 9 1/2 years that we don't have an upcoming test or procedure. The first time that I don't have to prepare myself to watch my baby be stuck with a needle or jammed with a tube.

So why was she troubled by the lack of medical intervention in her life? You would think she would be relieved. To be honest, she is never stressed when she has tests (barium enema excluded) but you would still think that her joy would match mine. Actually it should have been greater.

But, it's all she has known.




(For those who have known us for awhile and remember that the docs said she may very well have orthostatic intollerance... hmmm do we really need a tilt table test now? I think her reaction after being sat up in the chair says it all. Who needs an expensive test. lol)

Researchers Link Premature Birth To Emphysema

While this study only included a very small sample (21), I feel it is worth mentioning.

http://www.reuters.com/article/latestCrisis/idUSL9310544

"A small study of 21 infants born up to four months prematurely in the 1980s and weighing as little as 0.6 kilograms showed that by the time they were young adults all had lung problems, including 84 percent who showed areas of emphysema."

"The young adults in the study were born between 1980 and 1987 and were dependent on supplementary oxygen for more than 28 days during their stay in the hospital."

Anonymous Asks....

I received an email from a parent who is asking for guidance and information. This parent has asked to remain anonymous. I hope everyone will take a minute to read the post and see if they have any suggestions, as they have in the past. I have already sent a response to the parent, which you can read in the comments section.

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I'd like to know if it's too early to make an independent decision to take my son to a neurologist. He is a 22 month old 27 week preemie who weighed 980 grams at birth. His apgars were 0 and 0 at all intervals - and the hospital spent 45 minutes resuscitating him. He is currently in the less than 3rd percentile for weight and refuses to take a sippy cup or eat decent quantities of solids. He seems to have some sensory issues, i.e. won't take our hand when walking, must get down on his knees to move from a 1" thick mat to the floor.

He was recently assessed by a developmental group and received the following scores:

Bayley Scales of Infant Dev II

MDI: 107

PDI: 73

Classification: Mental 18-19 months, Motor 16 months

Receptive Expressive Emergent Language Scale-3

Receptive Language: 12 months

Expressive Language: 15-17 months

Rossetti Infant Toddler Language Scale

Language Comprehension: 12 months

Language Expression: 17 months

No one has interpreted these results to us, though I have found some information on the Internet regarding the Bayley PDI score - with the mean score at 85 and mental retardation at <70.

Our speech therapist insists that he isn't anywhere close to mental retardation, but his score worries me. When I asked the gal doing the assessment if I should be concerned, she replied, "Nooooo. He's just going to be a 'different' kind of learner." I have NO idea what she meant by that!

Long story short, I'm wondering if it would be effective to move forward and see a neurologist who specializes in preemie development. Or, should I just wait until he gets older for a more valid assessment?

THANK YOU for all that you do with your blog, especially when you share your own personal stories. I cannot tell you how much you have helped us!