Our Broken System

by Hillary Savoie

I was going to write this article about the process that we went through to get the Medicaid Care at Home Waiver for my daughter. It is half written on the other side of my screen. But, honestly, applying for Medicaid is such a long, arduous process that I’d hate to make anyone go through it a second time just by reading this.

brokenIf you are applying you will have your own process of sticking points, returned paperwork, redundancies, and gapping multi-month long silences. My own examples seem so unlikely to help you. I mean, sure, I could complain, maybe help you feel like you aren’t alone. And maybe, just maybe, if you have the same nit-picky problem I had, I might be able to offer some guidance about what worked for us….

But, more importantly, what I can tell you is it’s going to be tough. It is going to take so long that at a certain point you are going to tell your case worker to take the application and, well…you know what I mean. And what’s worse is that if you are relying on Medicaid for nursing to, say, get back to work, it may take like, um, nine months. In more good news, if you are hoping that Medicaid supplemental insurance will help you with your private insurance woes, insurance is still going to deny, deny, deny…and Medicaid will join in the fray! Oh, and that equipment you need to order? Your child may have outgrown it by the time it arrives.

Hey, I know, I know. I’m just trying to be honest.

But, seriously, stick with me here. I am not going to bother you with the details of our story. Like I said, you don’t need to relive or pre-live this stuff. But you know who does need to know? Your local, state, and federal government.

Private Insurance Woes

There is a very real problem in the way the private insurance system addresses children with special needs…they just don’t cover the extra things you need for children who are chronically and critically ill: nursing, bath chairs, formula, medical equipment. And, perhaps, it is especially so for kids like mine who remain undiagnosed…and, therefore, gasp, uncodable.

Furthermore, the more costly your child gets, the more they look for ways to not pay and the more bureaucratic absurdity you will find yourself swimming in. For instance, we recently had testing codes approved for a particular genetic test. Great! We did the test only to find out that it is covered—but no covered lab does the tests. And, apparently, I was to divine the second half of that equation. So, the tests are covered in magical LaLa Land, but not in real 2012 America. That was an exciting multi-thousand dollar surprise…our girl is getting a Collagen IV Congenital Muscular Dystrophy genetic test for Christmas (for the next ten years)!

And Then There is Medicaid…

Medicaid is an amazing blessing in so many ways insofar as it covers nursing, equipment, and those copays that seem so insignificant when your child isn’t in the doctor’s office three times a week and on six medications. But Medicaid does not adequately respond to the variation in the population of children, the speed at which modern medicine advances, or the urgency with which you need to address your child’s changing status. For instance, the only two medications that have consistently worked for my child’s reflux and seizures have both been denied by Medicaid. They, of course, each have $50 copays. Private insurance covers them—it’s not like I am talking about talcum power infused with magical properties here. And they work for us. The anti-convulsant was one in a string of six other medications we tried. It was the only one that did anything at all for her. All the others, of course, were covered. My daughter has expensive taste. While the law says Medicaid must cover any treatment my daughter’s doctor prescribes, getting the state to comply with the law is unbelievably tough.

The multiple levels of control over Medicaid paperwork at county, regional, and state levels makes the process overly arduous. And their habit of returning paperwork for a slew of inane reasons makes the process too unpredictable. Our nursing paperwork was returned something like four or five times when we started. Once it was returned because the letter from our pediatrician did not say “Letter of Oversight” at the top. Yes, that is a totally reasonable use of our state worker’s time, am I right?

Our children are in a population that is often taken advantage of because the people caring for them are so busy keeping them safe and trying to make their way in life…especially within a system that does not provide an adequate and simple means to provide feedback. Unlike, say, the Early Intervention system, where there is a simple parent-led way to raise systemic concerns, the Medicaid waivers seem to have no such built-in parent-centered monitoring or grievance process…and least none that I have ever found. Additionally, since we are a diverse group, it may be hard for legislative bodies to be flexible enough to respond to our needs. The flexibility would need to be written into the system. But one letter here, and one letter there to state and federal government doesn’t seem to draw enough attention to the larger changes that are necessary to better serve us…and, more importantly, our children.

Fighting the System

So, what I am proposing is that each of you who have interacted with Medicaid or who have struggled with private insurance coverage for your child, flood me with letters about your experiences.

Here’s what to do:

  1. Check out the blog I started for this purpose: http://ezzysletters.blogspot.com/
  2. Write your own letter outlining your experiences with private insurance and Medicaid. Be specific. Legislators need to know what your situation feels like and what changes can make things better.
  3. Don’t forget to include your name and address on the letter.
  4. Click on the link on the right-hand side of the blog to contact me with your experiences.
    Send me an email with your letter and a picture of your child.
  5. Look out for your post. I will post your letter on the blog, and, if I receive more than twenty letters in total by the first of the year I will forward them as an entire group of letters to each US senator and congressperson that covers the areas represented in the letters. I will also send them to the president and the first lady. I will ask them to please hear our voices and better respond to our children’s needs.

These are the people who need to read our stories. They are the people who can help make changes to the system to more adequately support our children. These are the people who need a better understanding of the arduous process we go through in order to fill our children’s basic medical needs. They also can learn the potential for cost-effectiveness based on our experienced of redundancies and unnecessary bureaucracy.

Perhaps our shared voices and collective experiences will help them understand the necessity of reforming our system both for cost-effectiveness and for better and more flexibly fulfilling our children’s needs.

Author: Hillary Savoie • Date: 11/21/2012

About the Author

Hillary Savoie is Esmé’s Maman, This American Life scholar, and a yoga nerd. In between organizing Esmé’s schedule, yelling at her insurance company, and corralling doctors, she spends her time playing peek-a-boo, dancing with Esmé, writing her doctoral dissertation, and breathing deeply. For more information on life with Esmé see Hillary’s blog: http://thecutesyndrome.blogspot.com/ 

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