Do Unto Others — 5 Minutes for Special Needs

Do Unto Others

by SarahM


A few weeks ago, my cousin posted something on Facebook that had been making the rounds.  It was a simple note from a doctor (real? fake?) basically stating that this doctor was against health care reform because the problem was not health care issues but the fact that Medicaid is a diseased program, that everyone who is on Medicaid is lazy and taking advantage of the system.

I have to admit at this point that while I appreciate that everyone has a point of view, I did not appreciate the fact that she then commented that the article was “so true” and a “must read.”  So I defriended her.  My own cousin.

And why?

Well, because she was well aware that for Potato (my son), and for thousands of other children, adults, and anywhere in between, Medicaid is the one program keeping the hope of healing alive.  I would bet anything that a majority of families that use Medicaid use it because they have to do what it takes to keep going.  And Potato and I, her cousins, who she was fully aware use Medicaid, need those programs to survive.  For her to insinuate that broad generalization that all of us Medicaid recipients are lazy and wrong…..well, I can’t say I wasn’t hurt.

Shortly after this Facebook nightmare and a resulting blog post on my personal blog, I got the letter. The dreaded, you are no longer eligible for Medicaid, letter.  The letter that basically brought my world crashing down around me.

Let me lay it out for you.

The hubs and I pay good money for the best PPO health care that our employer offers.  It costs about $400 a month out of our paychecks.  We have a $500 deductible, which we reached within the first month of Potato’s birth and subsequent hospitalizations.  So, for health care alone, in the 19 months he has been on this earth, we have spent $8,600 out of our own pocket for health care.

And we love BCBS.  They have taken great care of us.  They never question charges, they pretty much pay anything at any doctor.

But, because they are a PPO, we pay very high co-payments.

In the past 19 months, according to our tax documents, we have paid over $15,000 in hospital and doctor co-payments.  That’s just co-payments.  $30 here, $20 there.  In 19 months.  Don’t even get me started on the $4000 in prescriptions as well as the recent bill for home nursing support.

But Potato requires more.  Potato requires a monthly supply of feeding bags, specialized formula, oxygen, and both day and nighttime nursing care.  This is above and beyond the cost of normal baby things: clothes, diapers, wipes, etc.

So here is a breakdown of the medical costs it takes to keep Potato alive for one year (minus doctors bills):

1 Can of Elecare (formula) = $33
He uses 26 cans a month = $858
For one year = $10296

Medical Supplies (oxygen rental and feeding supplies)
One month rental = $1000
For one year = $12,000

Home Nursing Care = $25/hr
8hrs a day / 4 days a week / one month = $3200
For one year = $38,400

Prevacid & Norvasc & Inhaled Prescriptions Out of Pocket = $60 + $20 + $300
Refill every month = $380 a month
For one year = $4560

So far, for non-hospital related expenses, we would be paying $65,256 a year just for the necessities to keep him alive.  Add in hospital expenses, doctor co-pays, early intervention therapies like physical and speech therapy and the like, we are looking at a total bill of $100,000 a year just in medical needs (again, not including diapers, onesies, developmental toys, baby food).   And this renews every year.  This is not a one time charge.

Here’s the kicker though.  As hard as Hubs and I work, our salaries combined do not equal $100K. Which means that just working full time jobs, the both of us, wouldn’t bring in enough money to cover the costs of Aidan’s care.  Meaning, we would have to max out our credit cards, dip into our savings, and the like (been there, done that) to afford it.

So how do we afford this?

We seldom go out to dinner/lunch/breakfast, hardly ever buy clothes (yay for Mom’s hand me downs), and have had 2 Christmases, birthdays, hanukkahs, mothers and fathers day, and anniversaries in a row where we haven’t gifted each other (or Potato) anything. And we choose not to do these things because we have to save for the surgeries that cost a couple thou.  Or for Potato’s schooling.  Because that’s what it takes to survive.

You know what else it takes to survive?


Potato is the fortunate recipient of Medicaid in Virginia.  So on top of our expensive PPO, which covers most of his medical things, we also receive Medicaid which covers a majority of the rest (it does not cover his new doctor in Maryland, nor does it cover his medications).

Medicaid gives us the day and nighttime nursing care, which makes it possible for me to work my butt off for a measly wage as well as sleep.  Medicaid covers the cost of his therapists, which come every week from the county to get him ready for school.  Medicaid covers his dentist bills for his rotting teeth and cleft palate due to the amount of time he spent on a ventilator and his incessant need to vomit.  Medicaid gives us the peace of mind that we can take care of our son in the best means possible.

For many against government assistance, their argument is that it is a hand out, not a hand up.  Well for us, for Potato, Medicaid pays for the tools necessary for us as a family to succeed.  It allows us to work and provide for our family while keeping Potato out of a slimy day care that can’t attend to his feeding tube needs and gives him probably-fatal childhood illness.  It allows us to know that we can keep the medical team of doctors we have assembled to give Potato the best care.

And if that isn’t a hand up, I don’t know what is.

So, if you are my friend, and you comment on this post or anywhere that Medicaid is an evil program that needs abolished or that you hate paying out of your taxes for it or blah blah blah…..then you are essentially condemning Potato to death.  And you are no longer my friend.

Oh, and if you refuse to pay out of your taxes for government care of others that are disabled or need special care, then I simply quote my high school’s motto:  Do Unto Others as They Would Have You Do Unto Them.   Just food for thought.

(BTW, we did have our Medicaid extended.  I increased my hours at work, and we have sold a lot of our belongings to afford the medical costs that BCBS is no longer covering.  Due to this, I will no longer be blogging here or anywhere as both of my computers have been sold.  I really appreciate all the love and support you have given me and my family these past few months.  I, in turn, would ask you, in my absence, to turn all of your love, attention, and support to Parker and his mom, who are in a familiar boat, but require much much more than I could even write about.  God bless!)

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1 Deborah October 7, 2010 at 9:28 am

Sarah, if you get this comment, please contact me by email ( I, too, am in Virginia, and several of my children receive Medicaid.

I have a couple of ideas for obtaining increased services from Medicaid. Is your son on the EDCD waiver? Do you participate in the HIPP program (Health Insurance Premium Payment)? The HIPP program will reimburse you for your share of the cost of your employer health insurance. For example, I pay $220 a month for my employer sponsored health insurance through BCBS. The HIPP program will reimburse me monthly for that amount.

Let’s talk if you like. If you email your phone number I will call you to keep the costs down for you.


2 Michelle October 7, 2010 at 10:14 am

Wow, this really hits home for me.

I too have BCBS and Medicaid as a waver. My son is diagnosed with cp and epilepsy. Not that I want him to have epilepsy but without that element of his diagnosis, he would have not been eligible for the waiver.

I feel you on defriending your cousin but you must forgive her. She’s obviously ignorant to the severity of medical expenses people like you and I would have to incur if it weren’t for Medicaid.

I think people get confused between those who have Medicaid without working or doing anything productive and those who need it to help care for medical needs in extreme circumstance.

While I have BCBS, our annual family deductible is $2300 of which Medicaid covers. I’m thankful for that.

I’m in New York and our medicaid plan may be differently structured but is it possible you can apply for a Medicaid waiver or is that what you had? Also, Care At Home is a program my son receives that is approved under BCBS and Medicaid. They cover the costs of a home attendant, 4 hours a day, his Pediasure and his diapers.


3 Stacy October 7, 2010 at 6:31 pm

There are a few different things going on here. I believe that the government should take care of people who can’t take care of themselves. However, I don’t believe it should take care of people who won’t take care of themselves. I personally know people who fall into both categories. Families of medically fragile kids who scrape every penny and need Medicaid to keep their kids alive. And families who receive all sorts of benefits and have iphones, every cable channel known to man, and eat out more than I do even though no one in the home has a job. But to say that yes, the first category “deserve” benefits and no, the second category don’t “deserve” them is tricky. I think some people (not saying anyone here, but I’ve heard things IRL that make me believe) forget that Medicaid and all other government programs come from someone else’s tax dollars. Some families are working and paying into the system that they are taking out of, and other people are taking without paying in and have no sense that someone else had to work to earn the money that the government is giving them. When what people see is the second category of people instead of the first, it is natural (not saying correct) for them to believe that people are taking advantage of the system.

4 Janis October 8, 2010 at 1:01 am

I’m very sorry for your situation…and sorry to see that you won’t be able to blog anymore. ((HUGS))

5 Mary E.S. October 8, 2010 at 11:20 am

My heart,thoughts and prayers go out to you and your family.I have a niece whose child is on medicaid and belongs there but I also have another niece and her husband who are abusing the system. This makes me see both sides of the issue.Your cousin was totally wrong in what she did.Some do abuse the system but most don’t. One’s like my niece and husband that are just too lazy to work are the main reason there are children like my son’s who can’t get help.After reading your post,I will always be thankful that my boys are not worse off than they could have been.

6 mamikaze October 8, 2010 at 6:49 pm

I saw that awful post on Facebook. It makes me so mad that people are willing to accept those 5% as the representative.

We are just a few hundred dollars over the income line for SSI, Medicaid & SCHIP. Washington State has excellent health insurance oversight but no special needs waiver. We are teetering on bankruptcy every month.

We opted for a PPO when my husband changed jobs. The extra expense is worth the flexibility. Most of the time. $30 copays and 20% deductibles add up fast with 2 kids in 2 therapies each week.

Thanks for contributing to 5MFSN.

7 Mandy October 11, 2010 at 11:55 am

That was a really powerful reminder that not everything is black and white.

8 Dawn October 11, 2010 at 12:27 pm

A very well written piece. Every (health care)system has it’s flaws – and so agree with you it’s not black & white. If it weren’t for Medicaid, we would be in a world of hurt financially. Ayden was hospitalized in the NICU/PICU for the first 9 mo of life… can’t even imagine what that would have cost us! He has been on O2, g-tube feedings, etc for the past 4 1/2 yrs.
I wish you all the best and hope you can keep Medicaid for a while longer.

9 Rach October 12, 2010 at 11:25 pm

This hit home, Sarah. I’m so sorry for all you are going through right now.
In the state of Wisconsin, we have several programs such as the Katie Beckett program that insure a special needs child of Medicaid coverage regardless of parental income for all of the reasons you eloquently stated. The social worker for this program told me that there is a form of this program in every state, to her knowlege, but that it is not refered to as the Katie Beckett program in every state. I’m not sure what it would be called in the state of Virginia. There is also a state program called the Child Waiver that can help with equipment and treatment that both insurance and medicaid have denied. I wonder if Virginia might have a similar one?
I sincerely hope your family can find some programs to help.

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