My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Friday, January 7, 2011

Mom Rants

by Joyce...oh where to begin. This package maybe. It arrived the day before Christmas. I decided to not spend to much time with it until after the holidays...

Procrastinating? I suppose. Denial? Maybe. Fear? For sure.

The package contained the manual for Caresource which is the HMO type provider of Medicaid services in Northeast Ohio. It contains the names of hundreds of doctors who have declared they are willing to take the lower than average payments for the care of treating a patient with Medicaid. There is just one problem. None of Sarah's doctors participate. So we have to pick a new doctor. Even a new hospital.
Now what's the big deal, you ask? I've heard that from a few sources lately. "Oh so and so says, no problem, they pay for everything..." "Yea, my next door neighbors, great nephew three states over is on Medicaid and they have the best deal going..." "I talked to the director of this agency and he said they take care of all the bills. Don't worry about it." Truthfully, if I hear one more of these stories I think I will scream, SHUT UP!!!!
Has anyone if these people held their daughter in their arms, while breathing into her mouth to try to prevent brain damage or even death before the paramedics arrive because her airway has collapsed once again? Has anyone of these people sat in a conference room and had a doctor tell them there is nothing more that can be done to extend their daughter's life? Has anyone of these people ever had an emergency room doctor yell for the crash cart while your clinging to your daughter's hand? Has anyone of these people had to make a drive all the way across the county just to visit a doctor who is willing to take Medicaid? and is willing to treat their daughter with life threatening respiratory issues?
It's not that easy. What I simply would appreciate is an arm around my shoulders. A voice who simply says, "I don't know what it is like, but I am here to support you. To walk beside you. To help in anyway I can." It rarely happens.
I've had people ask me why I blog. And this very topic is why. I've found a few people who do understand. Like Tammy. She recently did a post that I was so able to relate to. I left her a comment to let her know that I understand. And to reach out. She talked about the days when she is so on her last ropes that she thinks about diving head first off Squaw Peak. We have no mountains in Ohio, so I suppose I would have to dive off the 9th Street Pier, but I do understand. And we both understand that feeling of desperation when our trached kiddo is not breathing properly. You see, breathing is sorta necessary for life. For most, it is taken for granted.
I wrote a post yesterday on my creative blog. It got a rise out of a few people. Why would I write that? The same reason I am writing about Medicaid. Probably the same reason Tammy wrote her post. It helps. It helps us and it helps a handful of our readers get through the day. We reach out to each other. We support each other. We make decisions on a daily basis that most will not make in a lifetime. Such as paying the medical insurance premium instead of the monthly mortgage payment when cash flow cannot cover both. Even if it means, loosing the house.
Now, back to that Medicaid manual...


hollyctr said...

Oh Joyce! I'm so sorry this has been hard! I remeber feeling the same way when Ammon was diagnosed. I just wanted someone to say they were sorry, instead of "Oh he'll be ok" or "It could be worse" etc. Whatever you need Joyce, I'm totally there!

Anonymous said...

Darn. But before you go getting a new Dr check in person to see if the providers that you have now are willing to take Medicaid just for you. Most medical providers have limited capacity for a few people and are willing to do it if you've been a steady "customer" and have a strong relationship. Don't give up! Of course I know that you won't :)

Jen said...

Hang in there! I just wanted to echo the comment above mine. You can always try to appeal in order to stay at the same doctor/hospital, or at least try for the doctor/specialist most crucial. I KNOW this does happen because my father's employer just dropped his current insurance plan and they were forced to pick a new HMO. This wouldn't necessarily be a huge deal, except for my mom's kidney failure. She was already set up for a transplant whenever a person steps forward to donate at one particular hospital. They were told to appeal to see if the hospital would make an exception because of the length my mom has been involved with this hospital. Meanwhile, they researched hospitals known for kidney transplants and were looking hours and hours away. In any case, just last night a string of phone calls were phoned to my parents stating they had won the appeal, and the current hospital is making an exception to allow my mom to stay under their new HMO.
It can happen. Praying for you and Sarah.



Cathleen said...

Good luck. We lived in New Zealand two years ago when my daughter Lilly was two years old and we had NO HEALTHCARE because they have socialized medicine (and Lilly wouldn't qualify because apparently she would bankrupt the country or something ridiculous) and we basically had catastrophic through my US company. And she had horrible asthma that landed us in the ER in the US about every other week before we left for NZ. And we arrived in NZ when Lilly had pneumonia and could barely breathe... UGH. (Oddly enough the asthma was ok the whole year so we didn't have to pay out of pocket for too much - and the doctor we found that year rarely made us pay because - coincidence - his wife had a son with DS the month we arrived there and he was so sweet, learning from Lilly for his own family!) And I also totally relate to wanting your own doctors - it is SO HARD to find doctors and hospitals that you love - we switched OB's 3 times, pediatricians 4 times, etc... All I can do is say some prayers that you will find the right situation. Because Sarah is the most precious girl and deserves only the best!

Kristen said...

Oh believe me, with all my heart I UNDERSTAND!!

csmith said...

You have all my sympathy. I hate Medicaid. If it's an example of how universal healthcare would be in this country then NO THANKS. My kids have duel healthcare with private insurance and Medicaid and my youngest has an additional coverage for kids with "outstanding health problems". You would think we would be covered in any situation but coordinating all that coverage is a nightmare. Each doctor has to accept them all or we end up paying out of pocket and we already pay A LOT for our private insurance. And the companies often argue over who has to pay first and what services they will approve. So good luck and prayers from the Smiths.

Kristin said...

So sorry. Sometimes (lots of times) life just isn't fair. Our pedi is looking to retire. I don't know what to do either. I don't want to find another doctor! And it's just one little doctor, for a kiddo who is not even two. I feel for you. Where do you even start? Oh yeah - that crappy manual. Good luck :) Hugs.

Heather said...

I do understand my friend and I am here to support you.Always.

Rochelle said...

I so understand this post. I can't imagine you having to give up Sarah's doctors (or pay the extreme amount you have been for her insurance). Seriously something wrong with our great country.
Praying that her doctors choose to take the Medicaid, or at least get you linked with great doctors they know that do.
Thanks for always talking about this kind of stuff, I love to hear about people's lives and what their kids are doing but, I love the daily dose of reality that comes from you & Sarah.

Unknown said...

I am not sure that people who do not use the health care system should comment! and I am not sure if a person has never held there dying child in there arm should speak either...this is a members only club...our healthcare system is STILL broke..and I am not sure I have any answers...but I know that your Sarah deserves the best an so do should be able to choose your doctors and still be able to get assistance in paying for them...I am still listening if you need to talk!! smiles

Bethany said...

I am so sorry that you are being placed in this position by our still broken health care system! I know how hard it is for me to find adequate care, what a fight it has been, and how much I have to pay for COBRA insurance now that I am considered disabled, and I can not imagine how much more those things are for you. Sarah is a beautiful testimony of the care she has received, and of her greatest advocate - you. I just wish you did not have to fight so hard for things that should be a right and not a privilege.

Stephanie said...

I am feeling your pain here. We are in Illinois and in a similar situation. I can see the Indiana border from my house. However, we have to travel almost to the Iowa border for Cardio/Pulmo care. Up to Chicago for everything else. Things have gotten bad enough that we have the home numbers of several helecopter pilots, and I usually just call and do a direct admit myself to the PICU if we are in trouble.

Anyway, I am betting somewhere in the manual they ask for your "medical home" - or the place that you have the most doctors. You may be able to make your medical home someplace other than what is listed IF you can get your docs on board and IF they will write a letter of neccessity stating that you can't drive across country while doing CPR on your child. Make sure they emphisize the safety aspect. I assume you are on something like a Katy Beckett waiver - the whole point is to keep her safe in the home.

Good luck! Glad I found your blog! :)

Steph and Christopher

Christy said...

I don't understand what you are going thru.
I can't understand, I don't have a child with health issues, I don't live in a country that requires health care insurance to get health care.

BUT I love your blog, your enthusiasm, I have told my husband many times, when we finally make our trip to the US, we will be going to a quilt shop in Ohio, he looks at me oddly and says ok.

All I can say is I'll put my virtual arm around you and cry with you if necessary.

Anonymous said...

Joyce, I first met you in 1990. You struck me then as an intelligent woman with a signifant purpose in life. Our healthcare system is broken, and few legislators understand the impact of their decisions. I believe you can make a difference. I know you used to work as a government liason. I think you would be an asset to lead up the charge to help overhaul the Medicaid system in Ohio. I would be willing to help. Leslie Y.

Shelly Turpin said...

Joyce, I am sorry. I can't imagine what I would do. As much as I hate the drive down to Texas Children's, they do take Medicaid. I don't know who I would trust with my Bell. I am sorry you have to find new doctors to trust with your baby's life.

JennyH said...

Just the thought of trying to find ONE new doctor makes me cringe! And really Max doesn't have a huge list of health/medical issues.

I feel for you! I like what some others have said-- ask her current doctors and then keep trying!!

Groves said...

I'm so glad that you put posts like this in your blog whether you get grief about it or not - your perspective is worth a lot! Thanks for writing and sharing your wonderful daughter. She is really something. My kids love her, too.


Cathy in Missouri