The financial impact started very early on for us. My water broke at 23.0 weeks. We were told that I would probably go into labor within 24 hours so hubby took a leave of absence to stay with me in the hospital. One day turned into the next. I made it to 25.5 weeks. Hubby's short leave of absence turned into a month off of work without pay.
Paige spent 78 days in the NICU. Between my hospital bill and hers, the total was just short of $600,000. We had insurance so it was paid, right? Not all of it. Insurance wouldn't pay for any medicine that was not used as approved. Geesh.. what medicine was back then? It was all an experiment and meds were used off label.
Did the hospital work with us on the remaining $100,000 + bill? Nope. They were quite rude actually. We tried to pay the bill, little by little but it was impossible to do, especially because we were also paying for our own health insurance which cost us $900 a month and we now only had one salary. Does anyone know what it's like to eat Spagettios every day for months on end? I do.
After a year we filed bankruptcy.
Over the next few years our health insurance went up. We couldn't change carriers because Paige was uninsurable. We paid for therapies, specialists, medicines, leg braces and surgeries mostly out of pocket.
Turn to the government for help you say?? We tried that but we were turned down because hubby makes too much money and they don't take into account all that we pay out of pocket. When I explained this to the nice woman on the phone she told me that the best thing that we could do would be to get a divorce and then I could file the claim as a single parent. She told me that's what a lot of parents have to do when they have children with disabilities because the state only looks at gross pay. We were also told that every state is different and that we should consider moving to another state.
Neither of those options were acceptable to us.
Hubby finally got a job with a large corporation and we were able to get insurance through his work. Although it's a great policy, Paige's medical care still is a financial burden. When you add up all of the copays for specialists, our portion of hospital bills, our portion of medical tests, medicines, psychologist, psychiatrist, etc. there is nothing left over from hubby's pay. He ended up being transferred but unfortunately we went from one state that couldn't help, to another one.
We are not the only family that is suffering, financially, because of prematurity. There are many parents that I come in contact with that worry what the future will hold. How can we save any money when we live paycheck to paycheck?
Now, before everyone starts commenting that I am whining because my daughter was saved and now we are poor, let me say that couldn't be farther from the truth. My point is simply that prematurity affects more than just the child.
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19 comments:
Wow - did you hit the nail on the head with this one (again)!
I was employed full time up until my daughters' births, and I have not worked full time again since - that was nearly 21 years ago. We were one of the statistical over 80% of couples that DID divorce, so you can imagine, being a full time caregiver in a rural area for 2 children with disabilities - no, there is NO care available for families like ours (or probably anyone elses' either). I quickly went from a full time employee with full benies to within 10 years destitute due to caregiving, divorce and the inability to be employed. SSI? Nope - because I received spousal maintenance and the girls child support, we did not qualify.
This is a HUGE women's issue! I've been involved in several parent support groups over the years, and often mothers in these situations face low income even though they are well-educated.
In addition to not being able to be employed, mom has no health insurance benefits, no pension or 401K, medical expenses are enormous and in addition, if your child is in a wheelchair, you must provide some type of wheelchair accessible housing and a van to transport - all this is extraordinarly expensive.
Many children end up placed in foster care or institutionalized because one parent simply cannot do it all and continue to do it with financial ruin looming over their head. Ironically, foster care parents and those adopting children with special needs get loads of financial support - biological mothers do not. It appears to be a "saints and sinners" mentality when it comes to social services.
Currently I am in nursing school because of the fear of becoming a bag lady in my old age is very real.
Also, divorce and child support laws vary greatly among states in regard to support for women and continuing support for disabled children after age 18 (or 19 if still in school.) This is a major concern that needs to be addressed, as the dad often walks out of these families pretty much unscathed.
Thanks for adressing this!
Your story is a perfect example about how the community, the government and society do not support raising a child with disabilities.
I was reading an article yesterday on Salon.com about the Ashley X treatment for 9-yr-old, Ashley, with severe disabilities, in Seattle---the ethical dilemmas involved for all players. The first response in the "editors choice" list of responses was a particularly articulate statement by a writer who insists that some of the binds, the ethical dilemmas, if you will, result because the community does not fully include and does not concretely help families of people with disabilities.
"It takes a village to raise a child," but even moreso with a special needs child. And there is even less social responsibility towards families and kids with disabilities and fragile health.
If our communities and governments and society valued every individual equally, and provided for each equally, then there would be social/financial supports, as there are with Medicare and Medicaid. There would be respite care. There would be free or low-cost follow-up clinics---for the child's life.
Participating in research sponsored by academic centers may lead to free or reduced care for the ex-preemies. But those are not a sure thing, for the life of the child.
Large pediatric hospitals could have boasting rights, which would bring them good publicity, about their commitment to ex-preemies, providing follow-up care.
The March of Dimes could get on-board much more than it does now, with a commitment to families-made-poor by virtue of raising an ex-preemie.
Medical bankruptcy is an epidemic, according to NBC (MSNBC) a week or so ago. Universal healthcare plans are long overdue, and we can proactively vote for the plans and the candidates who promote them, locally and nationally.
My Vic has a Title XIX (Medicaid) card, which I insisted upon as a condition of adoption. (Each of his 8 shunt surgeries was $10,000 11 years ago to the tune of $80,000 in the first year---not to mention MRIs and CTs before and after each surgery. And not to mention $1100/month for therapies at Birth-to-Three, etc.) Without Medicaid, I would have maxxed out my insurance in the first year.
Even Medicaid is not foolproof, since plans and payments ebb and flow, and morph, depending upon the time in history and the state in which you reside. (You may have seen me write that in my state, Medicaid only reimburses $0.13 to $0.14 on the dollar---mine is in the lowest 10% of Medicaid reimbursement states.)
This should NOT boil down to a pie-in-the-sky ideal of the community embracing its members with disabilities. No. It should be a well-though-out commitment of the community, state and society to treat every member equally, affording each the respect and the dignity in their lives.
Medical bankruptcy, eating Spagettios for prolonged periods of time, having to move to another state, or divorce, or making your child a "ward of the state" would NOT happen if we could see our way clear to these altruistic AND common-sense provisions.
If the Preemie Experiment family hurts, we all hurt. If there is a stratification in society, with haves and have-nots, it fractures us in ways that may not be felt or seen for a while, but eventually will weaken us and bring us to our knees. (I think this is part of the inchoate anger of the Muslim fundamentalist and terrorist groups against our society--that we lack this societal altruism.)
I am a big believer in contacting our gov't reps to fight for more monies for research---but even more, there are families out there now who need financial assistance NOW. Anybody who has had this overwhelming debt, and who has filed medical bankruptcy should jump to the top of the list for recovery of losses to their family. Let us make monies available to them, I dare say, even before research.
Well said, all of you. As a parent of preemie twins, Pet Peeve 1 is the myth that preemies "catch up" by age 2 or 3. Pet Peeve 2 is the myth that the needs of children with disabilities are mostly being met by the government and communities. Much has been accomplished since the days when my own disabled twin brother wasn't allowed to attend school despite his ability to learn. (He later did go but only after he learned to walk at about age 8.) However, there is still much that needs to be done; in fact, I believe in many areas, we are losing services; for example, developmental care centers in our state have virtually shut down.
But the public perception that the disabled are getting everything they need is disheartening. Some ten years ago, our local newspaper covered a high-profile court case involving a severely disabled child. His parents were suing the hospital where he was delivered, and in the closing arguments the defense attorney stated that while the child's disabilities were tragic for the family, "Special education and Medicaid will take care of most of their problems."
I was incensed and wrote a letter to the editor. It read in part: "While I certainly don't want to trivialize the positive impact of special education and Medicaid, those programs are but two spokes in the wheel. Neither of those programs nor any other government program is without limits. The challenges (financial, medical, emotional, social, education, etc. etc.) are unlimited...the challenges don't end when the child completes Early Intervention or enters the school system. They don't end when the child grows too large for his parents to pick up. They don't end when a parent becomes ill or dies. Programs allow many families to keep their children home by defraying some of the medical expense and perhaps providing some caregiver assistance. It would be a travesty if such programs did not exist. While the government has begun new programs in recent years to encourage home care, their continuation depends on the Legislature or Congress. In our state, Medicaid seems to be a perennial here today, maybe gone tomorrow issue. Sometimes, all the programs and love in the world aren't enough to 'take care of most of their problems' and enable a family to stay together or keep a child out of residential care. Yet, residential care is generally more expensive for the taxpayer than programs which help keep the child at home. It is also not always available."
I then detailed he plight of a divorced, 59-year-old father whose 18-year-old, severely disabled son had aged out of a residential program. The father could not lift the child, and the facility's nursing director stated in an AP article: "It's like a child without a country...it's fighting a battle that we're losing and the parents are losing."
My letter also included a list of lifelong challenges for families who keep their children at home. They included:
--"Around-the-clock personal and medical care. When family emergencies occur, there may be few other people who are willing or capable of caring for the child.
--Daily therapies beyond what the child receives from professional therapists
--Recreation and interaction with family and others so that the child is included rather than just being left alone
--Parental job security. Some parents have lost jobs due to long absences resulting from their child's many medical needs or their child's extraordinary use of the company insurance policy. Other parents have a hard time changing jobs or getting hired at all.
-- Other financial needs. Some expensive needs are either not covered by insurance or other government programs or are covered very little. Some physicians do not take Medicaid.Handicapped-accessible vans and lifts are not luxury items, because wheelchairs for older, severely involved children are designed for use in vans. Transporting the chair in a car trunk means the chair must be partially taken apart (including wheels and footrests) and reassembled when removed. These chairs are also heavy, which is why it is difficult to take the child places.
-- Emotional and social needs. These families face changes in relationships with each other and with friends. As the child grows older and larger and perhaps even more severely involved, these changes may compound. Some families find that outings are nearly impossible.
-- Siblings' needs. If there are other children in the family, their needs must be met, too. This may be especially difficult for a single parent. (I should have included that parents can write off a lot of "normal" activities with their other children. Typically, the disabled child's needs must come first.) In our family, it has rarely been both parents plus another child doing something special together; it is usually one parent only.
-- Educational needs. The needs here are so great, and parents must learn special education laws in order to work out an appropriate IEP.
Finally, the letter explained that families of children with severe disabilities are not super-parents and weren't specially chosen because they had some magical stamina to deal with it, but they are a cross-section of society, and most do what they have to to keep their child home. "Yet, some of these families fall apart -- not because of a lack of faith -- but lack of sufficient support. Special education and Medicaid plus other programs help significantly but certainly don't cover "most of the problems. The needs of these special children test not only the priorities of their families but the priorities of the community. They test our values for human life at its weakest." I closed by saying that it really does "take a village" for children with severe disabilities to participate in as much as they are able and to live life to their fullest."
By the way, the parents of the child in the court case did eventually divorce.
Wow! When I was pregnant (xhubby now) sucked and worked with his uncle in a landscaping business. Lukcily, because I couldnt work with a not yet 2 year old and on bed rest with my second pregnancy, I DID qualify for Medicaid. I remember crying to my family for feeling not good enough for having to need to the goverment finance my pregnancy, pediatrician, etc. Their response was dont feel that way, we pay for it out of our taxes so hold you head high and use it. I thank God that I did and was able to .. I dont want to even think what my bill was with Taylor being born at 24 weeks, spending almost 4 months in the nicu, and then all of the therapists after we got him home. Thaks for stopping by! :)
We were lucky in one way I suppose that the hospital did work with us to let us pay off the copay and out of pocket of Stephen's stays little by little. But I still recall conversations with my dad who would want to know why we were short on money. I would explain that the medical costs were extreem, his first question was always don't you have insurance? Finally I got through when I asked him to figure up 20% of 350,000 dollars (Stephen's NICU bill) and multiply it by 30 stays and then divide by 36 months. He was appalled at the figure. ( for the curious, it comes to about 7000 a month roughly) Then I told him this did not include the on going costs of doctors, meds, therapies, etc. Finally he got it. Stephen in 10 now, and has not been hospitalized in several years, but my ex is still making payments on those bills and our credit ratings are affected for the forseeable future. You are so correct that the cost affects so many others. Not only the stress of the bills, but also my other kids who did not have the lessons, sport camps, and other "extras" that most kids they hung out with did. The cost is something that the entire family pays one way or another.
Hugs,
Tracy
And it makes me a little crazy when the telethons say things like "the money goes toward helping children and families" . .right. . The Children's Miracle Network is a good one for this as well as others. There IS no help from these organizations, although they sure do seem to be getting the word out that they are helping us! That is probably why people think we are being well-supported - there are so many hospital and children's disability organizations claiming it to be so.
I was in the position, the past 2 years in a row, of being told I couldn't apply for family medical leave of absence (FMLOA) for my son, an ex-preemie, with disabilities, because I had already applied for FMLOA for my 91-yr-old mother . . . so, as someone stated, your job is in jeopardy.
Also, during FMLOA your job may be held open for your return (by law), but you are not paid during that time. I got a big surprise when I got bills every 2 weeks for the full cost of health insurance to be maintained during my FMLOA time. No money was coming in, and a helluva lot of money was going out.
Needless to say, my credit rating went south during that time. And, as the dominoes fell, my ability to get a reasonable-interest car loan was no more . . . One thing leads to another, and your financial mess gets quite a bit worse as time goes on.
AND, the final dominoe--if you are a single parent, having been divorced due to the stresses of raising a child with disabilities, and you ever want to consider re-marrying, there is the possibility that a potential marital partner will shy away (in a marital property state) due to all your debt and bad credit. Believe me, that is REAL.
Chris and Vic
AMEN, sister. We had huge bills with my daughter's healthcare, the 36 week baby. Copays for expensive meds (imagine being on Xopenex and it only last 3 days and you are on it every day and the copay is $35 a box) or the otc because she won't gain weight (3 cans of pediasure a day at a cost of $10 for 6 cans). Specialists for her heart, lungs, peds, etc. ER copay visits cause she couldn't breathe. We are very fortunate to have excellent insurance. But it still adds up. Our medical costs have eased up quite a bit since those days. But I remember what a struggle it was. Sometimes we had to make the choice between a decent dinner and meds for our daughter. I remember our asthma specialist asking me if I had ever considered SSI. I said no we make too much money. We made it because we used to leave her office with grocery bags of samples. Thank God for doctors like that.
Prescriptions... Ugh. After we filed bancruptcy, it was the meds that broke us the most. Paige's rescue meds (in case she had a seizure that lasted longer than 2 minutes) were $300! Our insurance (that we paid 100% for) only paid $500 for meds per YEAR! We always passed that amount in the first month.
My good friend made plans to place her daughter in out of home care - her daughter was severely mentally retarded, severe cerebral palsy, g-tube, blind (former preemie with a grade IV IVH) - social services ran ads in the paper to find a local foster care family for her, but they received only 2 calls, one from an RN who was taking a year for maternity leave - once they found out how much work this little girl was, both inquiries back out. However, the county did find a placement in a foster home 200 miles away. Mom refused it due to distance. The county finally - after newspaper articles and letters to the editor supporting this mother - the county FINALLY began to pay this mom to care for her child. What made this case so disturbing, was in my state at the time, payment was allowable under 2 disability programs. The county however, did not want to start a precedence and have to pay other parents, so they refused to pay anyone. The alternative - insane as it is, was to pay a caregiver to come in and provide care for the child, at a cost of around $30 per hour while mom went out and found a job for maybe $8 per hour - then come home and be up most of the night providing care for the child - it is INSANE how biological parents in these situations are treated. Mom finally won out though, and was able to be paid as a foster caregiver for her child but the fight was incredible. Her daughter died shortly thereafter from a series of shunt problems that could not be controlled.
This mom is educated, articulate and very assertive in getting her needs met. The county was abusive to her, there is no other word for it. The programs that are designed at the state level to help, are railroaded at the county level. The feeling is, is that the child is a minor, parents are responsible for their minor children, period end of story. She was divorced from her child's father, and he went on to remarry and have children with this woman seeing his preemie daughter maybe 2 times per year. It's been 8 years since her daughter's death, and she still has not recovered emotionally from the trauma of being treated like a parasite from the system that is designed to "help".
Again, this is a huge woman's issue - mothers are being slammed by the way social services operates, divorce laws fail to protect the woman and children, and on top of that, waiting lists are growing be leaps and bounds from the growing numbers of disabled children.
The true cost... I must say that doctors and the world at large, do not take into account all the stuff that follows prematurity.
I do work less that before my child was born and sometimes have to go without health insurance. I can't save for retirment nor a rainy day... Medicaide counts all that.
Mom to the 3 million dollar child who was never asked about 'saving' my child just given her when they had made their money.
Kristina mom to a 25 weeker.
Wow. My heart goes out to you all. I feel I have been spared so much of this. Yes, I stopped working when my 28 weeker came home in order to keep him out of a daycare situation since he came home during RSV season. Our intent was to have me return to work this spring. We are enjoying having me home, so are looking to leave Seattle and relocate to Phoenix where the cost of living (cost of housing, especially) is lower.
We were fortunate to have a substantial set of stock options from the company I worked for that had become worth quite a bit. We cashed those in and kept me home. I do not know what we would have done had we not had that money...the idea of putting our son in daycare just made us both sick at that point. Not to say daycare is bad, but it just didn't feel right for us at that point.
My husband works for a rather large company with a health plan unlike any I have ever seen. We left the NICU not owing a dime. It was almost humbling to me and we wrote a personal letter of gratitude to the company's CEO for providing such amazing health insurance.
I can only imagine what financial straits we would be in without that kind of coverage.
I wouldn't change having my son even if it had sent us to bankruptcy, but what a shame that it comes to that for some.
Lori
Join the military.
Join the military you should have bearly any out of pocket expenses.
Join the military?
And be one IED away from making your baby parentless?
Wow, I feel extremely lucky! Even though we had an HMO at the time, there was no benefit cap. They paid the entire 88 day NICU bill. We applied, and received SSI and Medicaid through SSI while he was in NICU. SSI felt he had made significant progress and when he turned 2, they withdrew SSI benefits, causing us to fear we would lose Medicaid, as well.
So far (knock on wood)we have been one of the lucky few in our state to be approved by the suited beauracrats who determine who gets to maintain Medicaid. We have an excellent Early intervention program that ends at age 3(in 5 mos) Medicaid pays for this program and any copays and meds for him. If we lost Medicaid, I don't think we would go bankrupt, but we would be living hand-to-mouth on a cop's salary for a family of 4.
We live in fear every quarter that our Medicaid will no longer be approved. My husband already works 7+ days/evenings/nights a week at a dangerous job. We have no family time, my daughter gets pushed to the back burner because my son has higher needs.
I also live in fear that more issues will crop up. We left NICU with no brain bleed, which was a big relief and only minor aspirating and apnea issues, and developmental delays. As time has progressed, the Neurologist has diagnosed hydrocephalus and minor CP. I thought all was peaches and roses, and we are finding issues we thought we had dodged.
The true cost(for me) of having a preemie is the worry, lack of sleep, lack of time, quality or quantity, with your husband, neglect of other children, and the guilt.
FTR: Medicaid only pays what insurance doesn't, and only for my son.
One of my close friends has a sister who was born with several rare birth defects and was not expected to last the week. She is now 21.
My friend estimates her medical bills have exceeded the $20 million mark.
It's actually a racket - I am the dad of a 24 week preemie - who has had multiple issues - and this is my first exposure to the medical system. I think the docs/hospitals want these preemies to survive - so they will be long term patients for them.
Also - when the preemie is initially born - they promise you the moon - saying these kids catch up by 2~3 years, etc - so you can spend millions of dollars trying to save them.. It is a terrible travesty of human suffering and illustrates the new lows to which people can go.
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